about the author(s) vladimir y. pente sightsavers, cameroon country office, yaoundé, cameroon anita jeyam sightsavers, haywards heath, united kingdom stevens bechange sightsavers, senegal country office, dakar, senegal emma jolley sightsavers, haywards heath, united kingdom anne roca sightsavers, haywards heath, united kingdom sandra r. dossou sightsavers, cameroon country office, yaoundé, cameroon khady ba sightsavers, senegal country office, dakar, senegal joseph oye sightsavers, cameroon country office, yaoundé, cameroon salimata bocoum sightsavers, senegal country office, dakar, senegal laurene leclercq sightsavers, haywards heath, united kingdom elena schmidt sightsavers, haywards heath, united kingdom citation pente, v.y., jeyam, a., bechange, s., jolley, e., roca, a., dossou, s.r. et al., 2025, ‘corrigendum: electoral participation of people with and without disabilities in urban communities in cameroon and senegal’, african journal of disability 14(0), a1714. https://doi.org/10.4102/ajod.v14i0.1714 note: doi of original article published https://doi.org/10.4102/ajod.v13i0.1399. correction corrigendum: electoral participation of people with and without disabilities in urban communities in cameroon and senegal vladimir y. pente, anita jeyam, stevens bechange, emma jolley, anne roca, sandra r. dossou, khady ba, joseph oye, salimata bocoum, laurene leclercq, elena schmidt published: 17 apr. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in the published article, pente, v.y., jeyam, a., bechange, s., jolley, e., roca, a., dossou, s.r. et al., 2024, ‘electoral participation of people with and without disabilities in urban communities in cameroon and senegal’, african journal of disability 13(0), a1399. https://doi.org/10.4102/ajod.v13i0.1399, the orcid of laurene leclercq was given incorrectly in the ‘authors’ section. instead of https://orcid.org/0000-0001-9466-0883, the correct orcid for author, laurene leclercq, should be: https://orcid.org/0009-0008-4956-0179. the authors apologise for this error. the correction does not change the study’s findings, its significance or overall interpretation of the study’s results or the scientific conclusions of the article in any way. about the author(s) lebogang l. molefe department of nursing, faculty of health sciences, sefako makgatho university, pretoria, south africa leepile a. sehularo lifestyle diseases research focus area, faculty of health sciences, north-west university, mahikeng, south africa magdalena p. koen numiq research focus area, faculty of health sciences, north-west university, potchefstroom, south africa citation molefe, l.l., sehularo, l.a. & koen, m.p., 2025, ‘corrigendum: a programme of support for care assistants of children admitted with cerebral palsy’, african journal of disability 14(0), a1649. https://doi.org/10.4102/ajod.v14i0.1649 note: doi of original article published https://doi.org/10.4102/ajod.v13i0.1461. correction corrigendum: a programme of support for care assistants of children admitted with cerebral palsy lebogang l. molefe, leepile a. sehularo, magdalena p. koen published: 13 jan. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in the published article, a programme of support for care assistants of children admitted with cerebral palsy, there was an error in author 2 and 3s affiliation. for author 2, instead of: department of nursing, faculty of health sciences, north-west university, mafikeng, south africa it should be: lifestyle diseases research focus area, faculty of health sciences, north-west university, mahikeng, south africa for author 3, instead of: department of nursing, faculty of health sciences, north-west university, mafikeng, south africa it should be: numiq research focus area, faculty of health sciences, north-west university, potchefstroom, south africa the authors apologise for this error. the correction does not change the study’s findings of significance or overall interpretation of the study’s results or the scientific conclusions of the article in any way. introduction background to rehabilitation care workers research project on which this opinion article is based findings and reflections putting it all together acknowledgements references about the author(s) judith n. mahlangu department of family, community and emergency care, faculty of health sciences, university of cape town, cape town, south africa theresa lorenzo department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa eve m. duncan department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation mahlangu, j.n., lorenzo, t. & duncan, e.m., 2025, ‘rehabilitation care workers address environmental factors with persons with disabilities’, african journal of disability 14(0), a1609. https://doi.org/10.4102/ajod.v14i0.1609 opinion paper rehabilitation care workers address environmental factors with persons with disabilities judith n. mahlangu, theresa lorenzo, eve m. duncan received: 07 nov. 2024; accepted: 25 feb. 2025; published: 26 may 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction our opinion article stems from a research project that investigated the contribution of rehabilitation care workers (rcws), also called community rehabilitation workers (crws), to strengthening rehabilitation in community-based services at a primary level of care in two peri-urban districts. rehabilitation care workers are a human resource support system at community level that addresses the needs of persons with disabilities in equalising opportunities for social and economic development (ned et al. 2020; philpott, mclaren & rule 2020). they work across health, education, livelihoods, and social public service sectors to strengthen the own empowerment of persons with disability in accordance with the world health organization (who) community-based rehabilitation (cbr) matrix and cbr guidelines (who 2010). rehabilitation care workers in the two research sites provide support to persons with disabling impairments discharged from a hospital and/or a transitional level of care facility in the government provincial health system by following up on individualised rehabilitation plans under supervision of a rehabilitation professional. they take the prevailing social determinants of health into account and where possible address the environmental factors that affect the functional recovery, psychological well-being, social participation, and equitable inclusion of persons with disability (frier et al. 2018; lippi et al. 2022). the international classification of functioning, disability and health (icf) (who 2001) and the cbr guidelines (who 2010) are useful conceptual tools for identifying and addressing environmental factors influencing the community participation and social inclusion of persons with disability (rhoda et al. 2016). the icf identifies five categories of environmental factors: products and technology; natural and built environment; support and relationships; attitudes, and lastly, policies, systems and services. each of the five components of the cbr guidelines (health, education, livelihood, social and empowerment) consists of five elements, all of which warrant consideration by rcws to promote the provision of comprehensive, multi-sectoral support for persons with disabilities and their families. the purpose of our opinion article is to highlight some of the ways in which environmental factors in the two districts affected the ability of rcws to deliver services to persons with disability. background to rehabilitation care workers in 2012, the western cape provincial health department and the university of cape town launched an initiative that aimed at developing a suitably trained mid-level disability inclusive health workforce in the primary healthcare (phc) system. a 1-year higher certificate in disability practice (hcdp) was designed by a team of rehabilitation professionals and disability practitioners and registered with the south african qualification authority at level 5 of the national qualification framework. the first cohort of 28 students graduated in 2014. a total of 120 rcws have graduated to date, most of whom are employed in the peri-urban government posts or by non-profit organisations (npos) with their salaries paid by the department of health. some work in collaboration with rehabilitation professionals as members of a rehabilitation community services team that is being piloted in the two metropole districts. we anticipate that the findings will inform disability service planners and human resource managers in other cbr service settings about the job expectations and work conditions of rcws. research project on which this opinion article is based a collaborative inquiry was conducted with members of the community services rehabilitation teams in the two pilot districts with the aim of describing the contribution of a disability inclusive health workforce to the phc system. this opinion article is based on one of the objectives, which was to map the type and range of services rendered by hcdp trained rcws and to highlight how environmental factors in the two districts affected the ability of rcws to deliver services to persons with disabilities. purposefully sampled participants included eight hcdp alumni rcws; eight persons with disabilities that received their services, and three occupational therapists, one speech therapist, and one social worker who supervised the rcws. data were gathered with informed consent during three workshops of 4-h duration. data were presented in a venn diagram of intersectoral services followed by a tape-recorded discussion of barriers and facilitators to service delivery and a retrospective checklist of rcw competences based on the hcdp curriculum outcomes followed by a tape-recorded discussion of perceived strengths and gaps in rcw training. our opinion article is based on the audio data of discussions among the eight hcdp alumni rcws. the audio data were transcribed into textual data and deductively coded using the five icf environmental factors as categories. appropriate ethics approval from the relevant organisations was obtained. findings and reflections findings are presented under each of the icf environmental categories and substantiated with quotes from the data in italics. category 1: providing assistive products and technology the time delay between application for and delivery of an assistive product and the associated financial costs made it difficult for rcws to help persons with disability and their families: ‘also with assistive devices, wheelchairs and walking frame, patients can make applications, it can take them six months to wait for assistive device. persons with disabilities want to purchase the wheelchair, but they can’t afford it.’ (rcw, k, female) assistive products and technology (ap and at) services are hampered by barriers in procurement and delivery systems, inadequate integration of ap and at services across service providers, inadequate ap and at knowledge among service providers and insufficient numbers of service providers (visagie et al. 2020). rehabilitation care workers trained in the basics of ap and at can help bridge some of these barriers. a systems approach by health system planners at a primary level of care is advocated to facilitate seamless, equitable ap and at service delivery (visagie et al. 2020). category 2: making the natural and built environment accessible rehabilitation care workers identified features of the natural environment (e.g. climate, terrain) and built environment (e.g. human-made changes) that limited the participation of persons with disabilities: ‘we talking about our parks and beaches as well, some of our patients would want to go but … there are no ramps … we have a person with disability and they unable to access that specific area in their home.’ (rcw, k, female) the social environment in the two research sites also curtailed the ability of rcws to assist clients: ‘unemployment, that leads to poverty, crime, gangs and drugs and dependency on grants.’ (rcw, m, female) precarious environmental safety concerns and adverse social determinants of health affect the productivity and well-being of persons with disabilities (frier et al. 2018). rehabilitation care workers working in complex environments benefit from stakeholder support, a multidisciplinary approach and positive guidance provided by rehabilitation professionals (harriparsad & dlungwane 2022). category 3: creating supportive relationships rehabilitation care workers highlighted the significance of their role in facilitating supportive family relationships and that the relational complexities of this role contributed to work overload and stress: ‘family support is a very, very big thing that we [rcws] focus on in the community and homes. sometimes there is a very good positive spouse support as well as family support, but when it comes to another homes there is absolutely no support … which results in us overworking ourselves.’ (rcw, k, female) systematic reviews suggest that organisational as well as individual interventions may help to reduce burnout and build resilience in health workers that are exposed to significant occupational stress (thom 2020). self-empowerment of mid-level health workers is indicated through widening their perspectives on participating in continuing education self-management programmes (johnson et al. 2022). category 4: addressing stigmatising attitudes rehabilitation care workers reported that the hcdp equipped them to discern and address stigmatising attitudes towards persons with disabilities. they also faced resistant attitudes and limited recognition of their role: ‘we also talking about attitudes of our health professionals. sometimes they don’t show any empathy…. they talk about a person without a person.’ (rcw, k, female) rehabilitation care workers can be effectively utilised in cbr if their role is understood and their potential is not limited by professional protectionism and scepticism (philpott et al. 2020). differentiating the rcw scope of practice and how to collaborate with this cadre through task sharing and task shifting will overcome resistance by health professionals (gamiet & rowe 2019). category 5: making services, systems and policies more inclusive rehabilitation care workers knew how public, non-governmental and other sectors operated in the two geographic study locations and were familiar with the structural framework for disability inclusion. they reported that services, systems and policies created multiple bureaucratic and access barriers: ‘as much as services are available in communities, they are not easily accessible for persons with disabilities … they experience a lot of red tape. transport is available; however, it is not affordable. the waiting for appointments is long with both consultation and collecting of medications. also inappropriate referrals to us from hospitals.’ (rcw, m, female) acknowledging the grassroots contributions of rcws to inclusive development requires a re-evaluation of existing hierarchies in health systems and health education that place physicians and curative services at the highest level of influence and authority (mahlangu et al. 2024). putting it all together the rcws in our study lived and worked in the communities that they served. although the hcdp equipped them to support the rehabilitation, participation and social inclusion of the persons with disabilities, their contribution to health system strengthening was constrained by environmental factors. our findings highlight the need for health workforce education and training to include strategies for dealing with environmental barriers and social determinants of health (who 2023). more needs to be done to recognise the role that rcws play in the rehabilitation discipline by addressing their work conditions and supporting their employee well-being. doing so will promote the who rehabilitation 2030 call for action to prioritise rehabilitation within health systems (philpott et al. 2020). acknowledgements the setswana (a south african official language) proverb states that, ‘kgetsi ya tsie e kgonwa ke go tshwaraganelwa’ which translates as, ‘a bag of locusts is better carried by many people than an individual’; which means there is strength in working as a team. the authors are grateful to the rehabilitation care workers, persons with disabilities, social workers, speech therapists and occupational therapists who willingly participated in the study. they would also like to extend their gratitude to the research team for their valuable efforts and contribution in all stages of the research process. competing interests the authors reported that they received funding from the university of cape town, faculty of health sciences research stimulus grant, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions j.n.m., e.m.d. and t.l. were involved in all stages of research and j.n.m. wrote the first draft. j.n.m., t.l. and e.m.d. participated in data collection and edited and approved the final version. funding information the authors reported that they received funding from the university of cape town, faculty of health sciences research stimulus (grant no. 2022/23). data availability the data that support the findings of this study are not openly available because it could compromise the privacy of the research participants. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s results, findings, and content. references frier, a., barnett, f., devine, s. & barker, r., 2018, ‘understanding disability and the “social determinants of health”: how does disability affect peoples’ social determinants of health?’, disability and rehabilitation 40(5), 538–547. https://doi.org/10.1080/09638288.2016.1258090 gamiet, s. & rowe, m., 2019, ‘the role of rehabilitation care workers in south african healthcare: a q-methodological study’, african journal of disability 8, 537. https://doi.org/10.4102/ajod.v810.537 harriparsad, r. & dlungwane, t., 2022, ‘perceptions of rehabilitation coordinators on community outreach services in kwazulu-natal, south africa’, african journal for physical activity and health sciences (ajphes) 27(4), 3. https://doi.org/10.37597/ajphes.2021.27.4.3 johnson, l.j., schopp, l.h., waggie, f. & frantz, j.m., 2022, ‘challenges experienced by community health workers and their motivation to attend a self-management programme’, african journal of primary health care & family medicine 14(1), 2911. https://doi.org/10.4102/phcfm.v14i1.2911 lippi, l., de sire, a., folli, a., turco, a., moalli, s., ammendolia, a. et al., 2022, ‘environmental factors in the rehabilitation framework: role of the one health approach to improve the complex management of disability’, international journal of environmental research and public health 19(22), 15186. https://doi.org/10.3390/ijerph192215186 mahlangu, j.n., adams, f., baldwin-ragaven, l. & lorenzo, t., 2024, ‘disability studies and critical pedagogy in health professional education: developing a community-focused inclusive workforce using lessons from south africa’, in l. ned, m.r. verlade, s. singh, l. swart, k. soldatic (eds.), the routledge international handbook of disability and global health, pp. 371–390, routledge. ned, l., tiwari, r., hess-april, l., lorenzo, t. & chikte, u., 2020, ‘a situational mapping overview of training programmes for community-based rehabilitation workers in southern africa: strategies for strengthening accessible rural rehabilitation practice’, frontiers in public health 8, 569279. https://doi.org/10.3389/fpubh.2020.569279 philpott, s., mclaren, p. & rule, s., 2020, ‘toward “rehab 2030”: building on the contribution of mid-level community-based rehabilitation workers in south africa’, south african health review 2020(1), 155–162. https://doi.org/10.10520/ejc-healthr-v2020-n1-a19 rhoda, a., waggie, f., filies, g.c. & frantz, j.m., 2016, ‘using operative models (icf and cbr) within an interprofessional context to address community needs’, african journal of health professions education 8(2), 214–216. https://doi.org/10.7196/ajhpe.2016.v8i2.850 thom, r., 2020, ‘a call to action: promoting mental wellbeing in south african healthcare workers’, south african medical journal 110(8), 13040. https://doi.org/10.7196/samj.2020.v110i815017 visagie, s., scheffler, e., seymour, n. & mji, g., 2020, ‘assistive technology service delivery in south africa: conceptualising a systems approach’, south african health review 2020(1), 119–127, viewed 04 july 2024, from https://www.hst.org.za. world health organization, 2001, international classification of functioning, disability and health, who, geneva. world health organization, 2010, community based rehabilitation: cbr guidelines. towards community based rehabilitation, world health organization, geneva. world health organization, 2023, integrating the social determinants of health into health workforce education and training, who, geneva. introduction a global perspective on intellectual disability the imperative to focus on intellectual disability in south africa final reflections and conclusion acknowledgements references about the author(s) siyabulela mkabile department of psychology, faculty of humanities, university of cape town, cape town, south africa citation mkabile, s., 2025, ‘intellectual disability: indigenous and western systems of care with professor leslie swartz’, african journal of disability 14(0), a1691. https://doi.org/10.4102/ajod.v14i0.1691 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper intellectual disability: indigenous and western systems of care with professor leslie swartz siyabulela mkabile received: 18 feb. 2025; accepted: 21 july 2025; published: 30 nov. 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction intellectual disability (id) is experienced globally, with significantly higher prevalence rates in impoverished environments (maulik et al. 2011). despite this, most of what is known about id comes from higher-income contexts. thus, it is important to explore the identities and experiences of families with children with id in a wider range of contexts. these experiences are largely shaped by cultural meanings and social institutions. in south africa, limited studies have been conducted in the id field, possibly because of the shortage here of specialist professionals working in the field, although these professions are better represented than elsewhere in africa. whereas south africa reportedly has 0.32 psychologists and 0.28 psychiatrists for every 100 000 health care users, for the african continent as a whole, there is usually less than one person representing either of these professions per million people (lund et al. 2010; njenga 2009). professor leslie swartz’s work has included exploration of the understudied, marginalised population of people with id, including children, their families and communities. in my work with him, first as a doctoral student and later as an academic in the field, i have been interested in exploring this topic, with a special focus on the lived experience of black, low-income primary caregivers of children with id, locating these experiences within the context of their health care seeking behaviours and access to health and social services for their children. i have also been interested in exploring and then testing interventions that would bridge the gap between western systems of care, that is the biomedical health system and indigenous care systems, such as those provided by traditional healers and faith healers. in both areas of interest, prof. swartz has been instrumental as a guide, a mentor and a friend. below, i discuss in greater detail the studies prof. swartz and i conducted on this topic. a global perspective on intellectual disability a significant population-based investigation in a rural region of south africa found significant links between mild id and socio-cultural factors, suggesting increased id prevalence in lower socio-economic settings (kromberg et al. 2008). in a prior study involving children aged 2 to 9 years in the same underprivileged region of rural south africa, it was suggested that the results were representative and thus applicable to other rural areas of the country. it was argued that mild id was strongly associated with: (1) poverty; (2) poor diet and nutrition; (3) inadequate ‘intellectual stimulation’; (4) medically unsupervised home-based child birth; and (5) other aetiological factors such as maternal alcohol use during pregnancy, human immunodeficiency virus (hiv) infection and acquired immunodeficiency syndrome (aids) (christianson et al. 2002). along with these correlations, there is also documented evidence of parents and caregivers of children and adults with id experiencing high levels of stress. this suggests a need for mental health interventions for children with id, adults with id and their families. evidence suggests that social conditions such as poverty and material deprivation exacerbate parental stress for caregivers and families of children with id (blacher & hatton 2001; brannan & heflinger 2001; eisenhower & blacher 2006; heller, caldwell & factor 2007; smith, oliver & innocenti 2001). some studies have reported that informal family support can provide effective coping mechanisms, playing a protective role against caregiving burnout over time (le roux & fourie 2023; modula 2022). however, emerson’s distinction between proximal and distal causes provides a more comprehensive and nuanced understanding of the complex interaction between different familial psychological stresses (coetzee 2016; emerson & hatton 2009). proximal causes relate to those factors that are directly related to the challenges of caring for a child or adult with id, in the context of poor access to quality health and social services. distal causes relate to the underlying factors associated with id that aggravate the stress of being a carer or a parent of a child or adult with id, such as the lack of income to pay for basic things like transport to take a child to appointments, as in areas like khayelitsha that do not have any specialised health and clinical services for id. other distal factors include poor living conditions such as a lack of adequate housing, clean water and sanitation, which make it all the more difficult to care for someone with id. social capital is another important distal factor for carers and families of people with id as it denotes the extent to which they are able to draw support and experience connection with their immediate and community environment (putnam 1995). by characterising proximal variables as mediators of various types of behaviour, recent studies have provided important insights that enhanced the understanding of the connection between the child’s behaviour and the distress experienced by parents. for instance, the link between parenting stress and socio-economic status is worsened by various neurological factors like severe id and autism spectrum disorder. however, these direct causes should not overshadow significant indirect, underlying factors (emerson & hatton 2009). a study (emerson et al. 2006) involving 6954 mothers of children with or without id, found elevated levels of stress, unhappiness and poorer mental as well as physical health among mothers whose children had id. however, when statistical analysis controlled for socio-economic position (sep), household composition and maternal characteristics such as general health and educational levels, statistical differences between the two groups were nullified. approximately 50% of the increased probability to develop lower self-esteem and self-efficacy was attributed to the same three controlled variables, that is sep, household composition and maternal characteristics. in fact, sep on its own reduced differences between the two groups to non-significant levels (emerson et al. 2006; emerson & hatton 2009). a second large population-based social study examined the association between parental distress and sep among 4953 australian parents of children with and without id. parenting stress was associated with broader parental psychiatric symptomatology. socio-economic position, hardship, adverse life events and inequitable or inadequate social support were related to increased maternal distress. poverty amid children who were vulnerable to developing disability increased the odds of having maternal distress by 50%. the relationship between poverty and maternal distress was mediated through higher probabilities of experiencing adversity, lower health status and limited social and human capital. remaining risk factors of maternal distress were linked with the child’s behaviour, social abilities and emotional development (coetzee 2016; emerson & llewellyn 2008). perhaps the most decisive evidence on the relationship between socio-economic status and id, the resultant compounded psychological impact on carers and families of people with id, is corroborated by a third epidemiological study of 12 689 3-year-old children in the united kingdom (uk) (emerson et al. 2010). families who had children with developmental delay were significantly worse off on all the socio-economic measurements than families without children who displayed suspected delay. socio-economic adversity and higher levels of psychiatric illness were attributed to poorer personal capital because of lower levels of education and therefore lower-remunerative work, implying increased material hardship (coetzee 2016; emerson et al. 2010). the imperative to focus on intellectual disability in south africa intellectual disability affects both those diagnosed with it and those caring for them. the reported high prevalence of id in africa is of concern given the scarcity of biomedical health services to respond to the needs of both children and adults with id and their families (adnams 2010). studies that have investigated mental health services for individuals with id in lowand middle-income countries, including south africa, have reported several social factors as contributing to poor mental health outcomes and access to care. a scoping review on services for children with disabilities in lowand middle-income countries (lmic) (magnusson, sweeney & landry 2019) indicates the paucity of services and consequent impact on families. it is clear that access to rehabilitation services in africa is a challenge (morris et al. 2019; mkabile et al. 2021). while significant contributions and strides have been made in the literature on caregivers’ and parents’ experiences in various contexts, little is known about the experiences of black african caregivers and parents of children with id in africa, where specialised services for people with intellectual disability (pwid) and their families are limited or non-existent (mkabile et al. 2021). my work has sought to respond to this evidence gap, through conducting studies that focused on: (1) the lived experiences of black african primary caregivers of children with id in an urban township in cape town (mkabile & swartz 2020); (2) black african primary caregivers’ explanatory models of id and healthcare-seeking behaviour; and (3) exploring ways of bridging the gap between biomedical health professionals in id and indigenous id community support systems (traditional and faith healers). research project 1 research project 1 explored meanings and explanatory models of intellectual disability for families to whom children with id were born in low-income settings in south africa. thus, it was imperative for prof. swartz and me to investigate: [h]ow the birth of a child with id affects the family system in a complex low-income african context. in order to address this need, we conducted a narrative synthesis of qualitative studies on the subjective experiences of caregivers and parents of children with id regarding their caregiving experiences in order to identify gaps in the literature regarding caregiver or parent and family experiences in africa. (mkabile et al. 2021) we turned attention to qualitative research owing to the paucity of information and the lack of validated quantitative instruments in the african context (christianson et al. 2002). qualitative research in this work has proven able to provide detailed in-depth descriptions on which further work can be based (mkabile et al. 2021). we conducted studies with caregivers and biological parents of children with id, who were often black african mothers in khayelitsha, as well as community leaders in the form of traditional healers and faith healers who gave us an understanding of community perspectives on id and the role of traditional medicine and spirituality in supporting families of children with id. our primary aim was to review what is known about the experience of being a family caregiver for a child with id in africa. we believe that the imbalance of knowledge between developed and developing countries regarding disability, and specifically caring for a child with disability, requires more careful and thoughtful consideration, especially given the fact that disability is more prevalent in low-income contexts (mkabile et al. 2021; swartz 2014; swartz & marchetti-mercer 2018). following the narrative synthesis, it became clear to us that in south africa, post-apartheid, the understanding and management of id was still poor. this was complicated by various contextual as well as cultural explanations used to describe and conceptualise this condition. we then investigated explanatory models of parents and caregivers of children with id in khayelitsha, cape town. our aim was to gain insight on how caregivers understand the condition that their children were diagnosed with. results revealed that carers’ explanatory models included biomedical causes, injuries during pregnancy or birth, as well as spiritual causes. these explanatory models significantly shaped care-seeking behaviours among primary caregivers of children with id, with many caregivers seeking care and support from both the biomedical health system in the form of clinics and hospitals and local support systems including traditional healers, faith healers and churches. research project 2 the second project explored healthcare-seeking behaviour of primary caregivers of children with intellectual disability and barriers to accessing care. we also focused on access issues related to accessing disability services within the biomedical health system. primary caregivers reported significant difficulties in accessing services and support while having to cope in the context of extreme poverty and deprivation (mkabile & swartz 2020). the most important access issues include transport costs and difficulties with travelling to disability services, since none of the services were located in the local community where the research participants lived. further contributing factors are language challenges in many disability services, which mainly use english and afrikaans as the medium of communication, in a context where black african caregivers mostly speak and understand isixhosa, as well as the lack of local disability services that were accessible and relevant for black african caregivers. as a result, in this study, we concluded that, in addition to the urgent need to make biomedical id services more accessible, both in terms of cost and quality (mkabile & swartz 2022a), there was a need for collaboration between the biomedical and alternative healthcare systems in educating and providing support to carers and parents regarding id (mkabile & swartz 2020). research project 3 research project 3 explored the role of indigenous care systems in supporting primary caregivers of children with id and their families. as an extension of research project 3, prof. swartz and i decided to conduct interviews and focus discussions with traditional healers and faith healers, to get their views on how they conceptualise id and the causes of id, as well as their experiences of providing care and support to primary caregivers and families of children with id in their communities. the findings that emanated from this study highlighted very similar ways of defining and understanding id and its causes between traditional healers, faith healers and primary caregivers of children with id. in other words, similar to the caregivers, traditional healers and faith healers understood and framed id both in terms of biomedical conceptualisations and african belief systems (mkabile & swartz 2022b). research project 4 this project leveraged indigenous knowledge and care systems to provide better support and care to primary caregivers of children with id and foster collaboration with biomedical intellectual disability services. the results from research projects 1, 2 and 3 formed the basis of the research idea behind research project 4, which constitutes my current postdoctoral work. research project 4 is thus based on the main findings of my doctorate, as it relates to the ways in which black african primary caregivers utilise the services and support of indigenous systems of care vis-à-vis the western health system. as cited above in discussing research project 3, my phd study found that caregivers, indigenous healers and spiritual healers shared similar views about the causes of id in children. they all reported biomedical causes, injuries during pregnancy or birth and cultural views such as id resulting from the failure of the parent to perform a certain cultural ritual or rite, as well as spiritual causes, such as retribution from god or unhappy ancestors who may be displeased with the intellectually disabled child’s parent. in addition, i found that there were significant difficulties in accessing services and support, difficulties with coping in the context of extreme poverty and deprivation among those living in very low socio-economic environments. all of these findings meant that the local indigenous systems of care were not being leveraged to the maximum to provide appropriate and scientifically accurate information and support to families of children with id, in ways that would both recognise and uphold the place and importance of indigenous systems of care, as well as bridge and fill the gap between the western health system and local community support systems so that relevant and appropriate care could be provided to this marginalised population. the findings highlight a need to work with parents, traditional healers, spiritual healers, community leaders, civic organisations, non-governmental organisations (ngos) and community based organisations (cbos) working in khayelitsha and surroundings on developing a common understanding of intellectual and developmental disorders, as well as setting up collaborative ways of leveraging knowledge and information about id in ways that would benefit children with id and their families and primary caregivers. to this end, we have, for the past two years, been running an intervention study in khayelitsha to respond to the research gaps highlighted previously. the aims of this project are to: increase awareness and knowledge about id among marginalised, low-income communities. reduce stigma around id in khayelitsha and surrounding areas. engage spiritual leaders and healers with a view to developing ways of cooperating to improve the lives of children with id and their families. this work has been funded by the national research foundation and involves intervention workshops, qualitative interviews and focus group discussions. the body of work presented here, comprising research projects 1, 2, 3 and 4, has been presented at multiple national and international conferences, has produced six publications, and two honours thesis projects, as well as fostered collaborations with local and international scholars, specifically from the united kingdom (uk) and united states (us). final reflections and conclusion here are final words on the influence and contribution of prof. leslie swartz on intellectual disability research in south africa. professor swartz is a beacon of light and hope in the academic field of disability and mental health in south africa. while he has made immense contributions to science in this field through his many outputs, also in terms of fundraising for research projects, publications and teaching, his most important contribution may very well be his dedication to raising a new generation of black scholars in south africa. when i first met professor swartz, i was lost and frustrated with my phd topic. i knew i wanted to establish my academic career in id and to advance knowledge and understanding in this area, but i did not know where to start and how to narrow my doctoral topic in a way that would add knowledge to the field, as well as contribute to my growth as a scholar. professor swartz gently, but firmly, took my hand and helped me see the forest in spite of and as well as for the trees within the field of id. i was able to identify a topic that was both understudied and resonant with my ideals of social justice and serving the most marginalised in society. having been stalled and stuck with my phd studies for years before meeting him, i was now able to refine my research topic and produce a phd protocol, implement the phd research project and publish my findings within set time frames. we met regularly, sometimes weekly, sometimes at 06:00 am in his house in mowbray, and we would go through my drafts line by line, until we were both satisfied. he never tired of me and my questions, was exceedingly patient, always made time for me and made me feel as though i was the only phd student he had, even though the truth was that i was only one of the many students to whom he was offering the same level of guidance and support! the many hours of guidance and support he poured into my work and development resulted in my becoming the first african intellectual disability psychology scholar to earn a phd in 2021 when i completed my studies. multiple publications and book chapters, local and international conference presentations and collaborations with leaders in my field, both nationally and abroad followed. i now lead a programme of work that seeks to develop culturally sensitive and congruent models for providing services and support to children with id and their primary caregivers and families in south africa and abroad, and similar to prof. swartz, my commitment to scholarship in this field is equally matched by my commitment to lifting as i rise, by teaching, guiding and mentoring, the next generation of scholars who come after me. prof. swartz’s unwavering commitment to social justice and transformation in the field through teaching and mentoring young black scholars has brought vitality and recognition of the importance of disability services in the context of mental health in south africa and similar settings. as a white male, born and raised in apartheid south africa, he has given hope and modelled the way for transforming the academic landscape in south africa. acknowledgements competing interests the author declares that he has no financial or personal relationships that may have inappropriately influenced him in writing this article. author’s contribution s.m. is the sole author of this research article. funding information the author acknowledges the national research foundation (nrf) for financial support. data availability data that support this research article are available and kept under the university of cape town data management policies. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s results, findings and content. references adnams, c.m., 2010, ‘perspectives of 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conclusion acknowledgements references about the author(s) kerry gibson department of psychology, faculty of science, university of auckland, auckland, new zealand citation gibson, k., 2025, ‘“adults know best”: the silencing of young people’s voices in mental health’, african journal of disability 14(0), a1692. https://doi.org/10.4102/ajod.v14i0.1692 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper ‘adults know best’: the silencing of young people’s voices in mental health kerry gibson received: 18 feb. 2025; accepted: 05 aug. 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction including the voices and knowledge of people with lived experience is a priority for the disability sector. resisting the long traditions that positioned people with disabilities as the objects of professional concern or research interest, it is gratifying to see the growing movement underpinned by the mantra: ‘nothing about us without us’. leslie swartz, working alongside disability activists and lived experience researchers, has been influential in drawing attention to the voices of people with disabilities and challenging the ways in which they are marginalised, both in relation to social arrangements and the subtle professional discourses that serve to exclude them from discussions about their lives (swartz 2018; watermeyer & swartz 2016). i began my research career at the university of cape town in the late 1980s, where swartz supervised my masters’ degree with a thesis examining the effects of apartheid’s political repression and violence on children. after a stint at the university of witwatersrand, i returned to the university of cape town in 1994, where i worked closely with swartz on the development of an approach to clinical psychology which attempted to harness the power and expertise of black communities in undoing the psychological damage which apartheid left in its wake. over the extended period of our association, we co-authored several texts that highlighted the complex operations of power in psychological practice in the south african context (e.g. gibson & swartz 2000; eds. swartz, gibson & gelman 2002; swartz, gibson & swartz 1990). i left south africa for aotearoa new zealand in 2003, and my research interests shifted to my current focus on youth mental health. however, my research career has continued to be shaped by swartz’s critical observations on the power of the helping professions and the potential for our practices and ideas to disempower the very people we aim to help. in this article, i draw inspiration from swartz to reflect on the way that mental health professionals and discourses have the potential to disempower young people in relation to their own mental health. i argue that powerful discourses operate to silence the voices of those who experience difficulties with their mental health, and that these combine with invalidating representations of young people to legitimise the exclusion of youth from discussions about their own mental health. i conclude with some insights from the aotearoa new zealand-based mirror project that highlight the challenges young people continue to face in making their voices heard on issues related to mental health (gibson 2021). lived experience voices in mental health while almost all histories of disability representation and care would be likely filled with abhorrent and inhumane accounts, there are some unique aspects associated with conditions understood to affect the mind rather than the body. read and dillon (2013) trace the long history of pejorative representations of people with mental health problems and the treatments these enabled. they write about the way that ‘madness’ in medieval times was linked to witchcraft and demonic possession, deserving of the extreme punishments associated with ‘evil’ during this period. in the 18th and 19th centuries, pinel’s ideas led to a new ‘humane’ approach to insanity, one that saw those with mental health problems as in need of incarceration for the purpose of moral rehabilitation. as disease-based explanations of mental health problems began to dominate in the 20th century, these allowed for various radical biological treatments, often without the consent of recipients (e.g. lobotomies, electroconvulsive therapy (ect) and the overuse of medication). despite some forms of psychoanalysis offering a more emancipatory perspective, this approach reinforced a view of those experiencing mental health problems as fundamentally irrational and as unreliable narrators of their own needs. these historical discourses of evil, immorality, irrationality and illness continue to echo in current views of mental health, subtly shaping representations of people with mental health problems and the treatments thought appropriate for them. the 1960s and 1970s saw the rise of the antipsychiatry movement, which challenged the power of psychiatry and positioned those with mental health experience as the experts (berlim, fleck & shorter 2003). however, this revolutionary perspective collapsed and was quickly superseded by economic interests which favoured the rapid return of the ‘client’ to full productivity (dalal 2018). in keeping with a concern for efficiency, mental health treatments in recent decades have seen a focus on ‘evidence-based practice’, which delivers reliable outcomes in the shortest amount of time possible. while short-term ‘talking therapies’ such as cognitive behaviour therapy have been popular, recent decades have seen a resurgence in biological explanations and associated pharmaceutical treatments for ‘mental illness’ (horwitz & wakefield 2007). while an approach that equates mental and physical ‘illness’ seems to offer a more neutral representation of people experiencing mental health problems, the hierarchy that reinforces the expertise of doctors relative to their patients produces a relationship in which the voice of the person with mental health problems is secondary to professional power and knowledge (bentall 2009). in recent years, there has been a great deal of talk and writing about including the expertise of those with ‘lived experience’ of mental health difficulties (sartor 2023; sunkel & sartor 2022). however, invalidating discourses, both past and present, continue to justify the exclusion of those with ‘lived experience’ from discussions about mental health policy, services and research. increased recognition of the importance of intersectionality in understanding oppression has provided many examples of the way that marginalised and disempowered groups are particularly silenced in relation to their mental health (phoenix & pattynama 2006). much has been written about the way that psychiatry silences women and invalidates their experience, both historically and very recently (hirshbein 2010). working with colleagues, swartz points out how african knowledges of disability based on lived experience have been excluded from research and understanding (harvey & swartz 2024; ned, dube & swartz 2022). similarly, in aotearoa new zealand, māori and other indigenous groups have also struggled to have their voices and cultural expertise acknowledged in relation to their mental health (kopua, kopua & bracken 2020). the particular constraints on youth voices in mental health also deserve particular consideration. although there has been increasing recognition of young people as active participants in society, researchers have noted a gap between the rhetoric and the reality of meaningful inclusion of youth in decision-making (cockburn 2005; jacobs & george 2022) and research (kim 2016). this gap is particularly evidenced in relation to youth mental health, where the disempowering discourses surrounding practice and research in this field are compounded particularly by the representation of youth as vulnerable and in need of adult guidance. it was swartz who first drew my attention to the peculiar way that young people are simultaneously treasured and disempowered. it was during the dark days of apartheid and the height of the anti-apartheid struggle where we and our colleagues were concerned to draw attention to the horrific impacts that state repression and political violence were having on south african society. swartz offered a critical analysis of the way that children (and youth) were represented in the psychological literature on political violence (swartz & levett 1989). the gist of their argument was that society readily positions young people as victims in need of protection. while this harnessed support for their plight, it also served to depoliticise political struggles and undermined the moral agency of young people who took part in these. similar issues play out in youth mental health, as i discuss below. power dynamics in youth mental health the united nations definition of youth includes young people between 14 years and 25 years. this is an age range that incorporates the period known by developmental theorists as adolescence (erikson 1968). it also recognises that the boundaries of youth have extended to match the increased time taken for education, the barriers to entering the workforce and delays in achieving independence in many contemporary societies (arnett 2007). developmental understandings of youth have become part of everyday discourses about youth in the many countries where western psychology’s influence has spread, even in countries where indigenous knowledge offers different perspectives (burman 2016). while developmental theories inform often well-intentioned efforts to support young people, they nonetheless serve to invalidate youth as reliable informants on their own needs or experience. these theories depict children and youth as in a process of becoming (adult), rather than as being, simply as they are (burman 2016). this has resonances with discourses, challenged by critical disability research, which highlight the way that people with intellectual disabilities are not considered to be fully human (eds. kittay & carlson 2010). in more recent years, the idea that the frontal lobes of young people are not fully developed until age 24 has helped to give credence to the idea that young people cannot be trusted to make decisions for themselves (arain et al. 2013). this is often treated as firm evidence in support of the idea that young people cannot be trusted and ignores cautions about making direct inferences from the structural properties of the brain to behaviour (poldrack 2018). these claims also ignore the variation in development across the life cycle and contradict social norms which allow young people to work, vote, marry and care for children. these psychological ideas help to justify the assumption that young people are vulnerable and in need of adult care (brown 2014). theorists have also noted the close link between the representation of young people as vulnerable victims and depictions of them as morally underdeveloped and dangerous (brown 2014). public discourse often shows young people as irresponsible and likely to engage in risky or even criminal behaviour without necessary adult control (kelly 2000; sharland, 2006). while it is true that young people might benefit from support from the adults around them, this idea overlooks young people’s capacity to exercise agency and to make thoughtful decisions about their lives. furthermore, while some young people engage in behaviour that might be considered risky, these risks tend to be overstated and become the basis for controlling policies and practices – including in mental health. the historical ideas about mental health as punishment, moral rehabilitation and medical expertise are echoed and amplified in relation to youth experiencing mental health problems. they are seen as risky and in need of control and moral correction; they are viewed as vulnerable and in need of care and protection; and they are irrational and lack the wisdom to know what they need. all of this combines to support a perspective that says adults, including parents, mental health professionals and researchers, ‘know best’ what young people with lived experience of mental health difficulties need. there is also another important reason why young people’s voices are so often ignored in relation to their mental well-being. it is a paradox that to have your voice treated as significant, it needs to be seen as both distinctive and absent from the conversation. the challenge is that adults have, at least at one point in their life, been young. this creates the illusion that having been there themselves, they believe they have sufficient expertise in what it means to be young (corney et al. 2022). faced with this pseudo-logic, society seldom recognises the need to pay careful attention to young people’s views and experiences. however, while adults might once have known and experienced what it was like to be a young person with little control over their lives, it becomes hard to imagine this experience as they grow comfortable in their adult power. furthermore, the experience of each generation is fundamentally different. this has probably always been so but is particularly salient for recent generations, which have been marked by rapid social change, underpinned partly by massive development in the digital technologies available to young people. despite these barriers to adults understanding young people’s experiences, youth mental health continues to be dominated by what has been called adultism – the myth that adults know best what it is that young people need (lefrançois 2014). young people’s experiences of being silenced on mental health issues in the aotearoa new zealand-based mirror project, we are doing research aimed at getting a better understanding of young people’s worlds in this generation and their views on various aspects of youth mental health (gibson 2021). we have so far interviewed over 500 young people across a range of studies exploring their experiences of mental health distress, their views of mental health services, their preferences for support in their own online or offline networks and their views on issues such as the causes of youth mental health problems and suicidality. while the research is limited by the fact that i am an adult, i have worked alongside young researchers who are closer in age to the youth who have participated in this project. we have also been experimenting with a range of more inclusive and participatory research methodologies that allow young people’s voices to be heard more clearly (gibson 2022; stubbing & gibson 2021). through this project, we have gained a new appreciation of the struggles that young people continue to face in having their voices heard in relation to their own mental health. the young people we spoke to conveyed their awareness of public discourses that undermined the validity of their mental health struggles. while this generation of youth have been the recipients of mental health literacy and anti-stigma campaigns (jorm 2012), they were very aware of negative public views surrounding young people’s expressions of mental health distress. despite the significant existential threat of climate change, economic inequality, political polarisation and an uncertain future, they were conscious that their generation were seen as ‘snowflakes’ and their problems as trivial. they offered examples of interactions in which young people experiencing mental health distress were described as ‘attention-seeking’ and how, when they sought help, they were told they would ‘grow out of it’. these invalidating discourses directed specifically to youth played out alongside more general pejorative views about mental health that influenced their ability to talk to the adults around them. these young people recognised that previous generations were constrained by views of mental health as shameful and unacceptable and that this influenced their ability and willingness to talk to young people about their struggles. others captured how their parents were invested strongly in their success and viewed mental health problems as a kind of failure. in aotearoa new zealand, where mental health professionals’ fears of suicide contagion have placed limits on the open discussion of suicide in media and public institutions, young people recognised this as a taboo subject. what was intended as protection felt to them like adults trying to pretend the problems they experienced were not happening. the young people who participated in our study were also very conscious of their position on the lowest rungs of the social hierarchy and how this served to silence their voices on many aspects of their lives, including mental health. in the neoliberal context of aotearoa new zealand, there is an emphasis on youth ‘making choices’. however, the reality was that the young people we spoke to felt they had little control of their environments and few options. they were told to listen to their parents and teachers, and even if they earned an income, they often had very little power in their workplaces. we captured many examples of young people’s fear of losing the little power they had if they spoke up about experiencing mental health problems. for those young people who had engaged with mental health services (sometimes involuntarily), their concerns were often borne out as they faced intimidating clinical settings, dominated by adults, and were given few choices over their treatment options. the powerlessness experienced by young people generally was even more pronounced amongst the māori and pasifika youth that we spoke to. generations of colonisation have undermined indigenous ways of understanding and dealing with mental health (moewaka barnes & mccreanor 2019). however, there is recent research that shows how rangatahi [māori youth] have been able to draw on traditional cultural resources to support their well-being (hamley et al. 2023). despite the value of these models, māori and pasifika people in aotearoa new zealand continue to face cultural barriers to their participation and influence within a european-dominated mental health system over which they have little influence (espiner et al. 2021; fa’alogo-lilo & cartwright 2021). young people also told us of their frustration at being positioned as the recipients of adult ‘advice’ and how they seldom felt listened to by mental health professionals or other adults in their lives. they provided examples of how hard it was to find their voice as the only young person in a mental health consulting room, surrounded by parents and professionals who took control of the conversation. while ‘talking therapy’ is intended to allow the opportunity to speak, some young people described how contemporary pedagogical forms of therapy sometimes left them feeling like they were pupils in a classroom taking instruction from a teacher. with a growing awareness of the value of involving young people as ‘lived experience’ experts, more services and research groups are equipping themselves with ‘youth representatives’. in practice, however, this often means that one or maybe two young people are present while a group of powerful adult professionals are engaged in high-level discussions about youth mental health needs. it is very hard for a lone young person (or even a small group) to offer a different point of view in these circumstances. there is a risk that even well-meaning attempts to engage youth in participatory roles in relation to mental health might end up being little more than tokenism. our research highlights that despite the recognition of ‘lived experience’ expertise in mental health, it remains very difficult for young people to participate in discussions and decisions about their mental health. discourses that invalidate their experiences, which deny their knowledge and expertise, and that rob them of their power exclude them from meaningful involvement in issues related to their own lives and well-being. conclusion the importance of listening to young people’s voices in mental health is not only an ethical issue related to their right to be included; it is also driven by a concern that without youth involvement, our understanding of the causes of mental health issues and the support needed to address these remains a poor fit for the needs of this group. this is particularly concerning, as statistics show rising rates of youth mental health problems around the world and poor engagement of young people with the services available to support them (mcgorry et al. 2022). increasing recognition of lived experience as a valuable source of knowledge in disability more broadly, and mental health in particular, provides a window of opportunity to learn from young people’s direct experience and awareness of their own mental health needs and priorities. engaging with this properly, however, involves deconstructing the discourses that invalidate people with mental health problems and doubly invalidate the voices of young people who experience mental health distress. we need to actively challenge the representations of young people that normalise their powerlessness and undermine their opportunities to participate effectively. as there is greater lip service paid to the importance of including ‘youth voice’, we need to be particularly vigilant to the potential for youth engagement to become tokenistic. for example, the practice of having one or two youth advisers on a board dominated by adults does little to facilitate young people’s impact on decision-making. in research, we need not only to offer opportunities for young people to express their views but also to actively challenge the power imbalances in the relationships between youth participants and adult researchers (wyn & harris 2004). co-design approaches to research suggest a helpful way forward in mental health research; however, it is important that engagement with youth is sustained and meaningful (thabrew et al. 2018). in addition, it is particularly important to make sure that the voices of indigenous youth are heard to capture the nuance of their experience as distinct from that of their elders (hamley et al. 2023). finally, we also need to encourage young people’s voices in challenging some of the unhelpful social discourses that act to prevent open conversation on mental health issues, including suicide. acknowledgements competing interests the author declares that they 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https://ajod.org� https://ajod.org/index.php/ajod/user https://ajod.org/index.php/ajod/user mailto:publishing@aosis.co.za abstract introduction methods results discussion conclusion acknowledgements references about the author(s) amina abubakar neurosciences research group, centre for geographic medicine research-coast, kemri-welcome trust research programme, kilifi, kenya institute for human development, aga khan university, nairobi, kenya department of psychiatry, university of oxford, oxford, united kingdom joseph k. gona neurosciences research group, centre for geographic medicine research-coast, kemri-welcome trust research programme, kilifi, kenya patricia kipkemoi neurosciences research group, centre for geographic medicine research-coast, kemri-welcome trust research programme, kilifi, kenya kenneth rimba neurosciences research group, centre for geographic medicine research-coast, kemri-welcome trust research programme, kilifi, kenya dennis amukambwa neurosciences research group, centre for geographic medicine research-coast, kemri-welcome trust research programme, kilifi, kenya charles r.j.c. newton neurosciences research group, centre for geographic medicine research-coast, kemri-welcome trust research programme, kilifi, kenya department of psychiatry, university of oxford, oxford, united kingdom citation abubakar, a., gona, j.k., kipkemoi, p., rimba, k., amukambwa, d. & newton, c.r.j.c., 2022, ‘perspectives of key stakeholders on educational experiences of children with autism spectrum disorders at the kenyan coast’, african journal of disability 11(0), a847. https://doi.org/10.4102/ajod.v11i0.847 project research number: ssc protocol number 2270 original research perspectives of key stakeholders on educational experiences of children with autism spectrum disorders at the kenyan coast amina abubakar, joseph k. gona, patricia kipkemoi, kenneth rimba, dennis amukambwa, charles r.j.c. newton received: 09 feb. 2021; accepted: 21 oct. 2021; published: 23 feb. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: little is known about the educational experiences of children diagnosed with autism spectrum disorders (asds) in the kenyan coastal context. objectives: we examined the diagnostic and placement procedures used in education on the kenyan coastal region. in addition, we investigated the education-related challenges faced by children with asd. methods: we conducted focus group discussions and in-depth interviews with 21 participants, including teachers, clinicians and educational administrators. data were analysed using an inductive thematic framework on qualitative data analysis software, nvivo 10. results: the findings from this study indicate that there were no systematic approaches to diagnosing children as having asd. teachers reported experiencing many challenges, including a lack of specialised training, inadequate resources and difficulty in managing children with different functional abilities in one class. conclusion: there is an urgent need for contextually relevant evidence-based identification, placement and management services to be put in place to meet the educational needs of children with asd. keywords: autism spectrum disorders; education; assessment; teacher training; special needs. introduction the prevalence and impact of autism spectrum disorders (asds) in sub-saharan africa (ssa) remain unknown (abubakar et al. 2016a). recent studies reviewing or estimating the global burden of asd point to the need for more data from lowand middle-income countries (damiano & forssberg 2019; olusanya et al. 2018). in recent years, there has been increased efforts to understand the prevalence of asd in ssa (kakooza-mwesige et al. 2014), validate screening and diagnostic tools for asd (harrison et al. 2014; kakooza-mwesige et al. 2014), understand the risk factors and markers for asd, understand the psychosocial factors influencing the lives of children with asd (gona et al. 2015) and preliminary efforts at developing interventions (franz et al. 2018). however, there has been little published work on the educational experiences and learning context for children diagnosed with asd (abubakar, ssewanyana & newton 2016b). two unpublished works from kenya (cohen 2012; riccio 2011) reported some of the challenges faced by children with asd and their families in nairobi and western regions of kenya. these studies used informal interview techniques with a range of stakeholders and observed that children with asd experienced a host of challenges within the educational setting. these challenges include misunderstanding about the potential of autistic children and the lack of individual attention in the classroom, all of which affects their learning and development potential. however, these were small-scale studies that did not use a systematic methodology, and the extent to which these results can be generalised to other regions in the country remains to be established. schools form an important management and educational care centre for children with asd in many parts of the world (marsh et al. 2017). following a diagnosis of asd, most children with substantial and very substantial levels of support needs will need individualised education plans for them to acquire the necessary skills and knowledge to help them and their families cope with the day-to-day needs of their condition (rabba et al. 2019; vasilevska petrovska et al. 2021). most asd screening and diagnostic tools are not widely used in the ssa context. they are costly, time-consuming, and require some expertise and training to administer and interpret the data (divan et al. 2021). an additional complexity to diagnosing asd in ssa is a medical model limiting diagnosis to few medical experts, such as psychiatrists and psychologists (abubakar et al. 2016a). in countries like india, teachers with master’s level education are trained to use screening and diagnostic tools to make reliable diagnoses (bhavnani et al. 2021). in order to optimise the school experience and outcomes of children with asd, there is a need for evidence-based identification and programmes. as a first step towards this aim, we carried out a study to examine the current situation in kenyan schools as they relate to asd. within the kenyan coastal educational system, the educational assessment and resource centres (earcs) are mandated by the ministry of education to diagnose and provide placement guidelines for children with special needs. at present, there are no validated tools for the screening and diagnosis of asd in east africa for use by either healthcare workers or teachers. this further contributes to the inequity in diagnosis and management of asd in ssa. thus far, there have been no systematic studies examining how diagnosis is made, the process of placement, or the challenges faced by children and caretakers of children with asd in kenya. given the lack of research evidence, we set out to examine the educational experiences of children with asd at the kenyan coast. specifically, we set out to answer the following research questions: ‘what are the challenges faced by teachers working with children with asd in the educational context, according to key stakeholders?’ methods study site the study was based at the centre for geographic medicine research in kilifi county, kenya, which covers an area of 12 610 km2 with an estimated population of 1 109 735 people. the languages spoken by a majority of the people include kigiriama and kiswahili. at the time of data collection, the county had a total of nine schools for children with intellectual and or socio-behavioural problems. eight of these schools had special units for children with intellectual disabilities, including those with autism. of the nine schools, only one has a class exclusively educating children with autism. sample size and sampling procedures we collected data using focus group discussions (fgds) and in-depth interviews. the use of both methods was largely for convenience as some participants were not able to attend fgd sessions, and thus, in-depth interview at their convenience was the best way forward. we held two fgds, one was with clinicians (n = 5) and the other one with teachers (n = 7). we also held nine in-depth interviews with key informants who have contact with parents with autistic children in various capacities. the children had a presumptive diagnosis of asd from the earc, where an earc officer administered a questionnaire from the kenya institute of special education, which included questions on asd symptomatology. they included non-governmental organisation (ngo) staff involved in disability support and advocacy work, educational administrators and earc officers, who are part of the assessment team involved in the screening and placement of children in the special education system. therefore, a total of 21 professionals (females, n = 7, 33%) took part in this study. data collection following informed consent for participation, participants were interviewed or took part in the fgds at venues that were most convenient for them during the data collection phase in 2013. all the interviews and fgds were facilitated by the second author (j.k.g.) in kiswahili, kigiriama or english languages. all interviews and fgds were audiotaped. a set of questions guided the sessions to ensure consistency. probes and clarifications were sought as deemed necessary. interview tool a checklist of questions was developed by the research team through discussion and consensus. refinement occurred based upon the initial interviews and discussion of the initial transcripts. table 1 presents the interview schedule used. the questions core to the interviews are presented; however, probes were introduced to clarify and enhance the quality of the interviews. table 1: sample questions in the interview schedule.† data management and analysis the final transcripts used for analysis were based on the audio-taped materials. data were analysed using nvivo 10 (qsr international; new york) by the framework analysis (silverman 2010; strauss & corbin 1998). the transcripts of the interviews were reviewed and read (familiarisation), during which a coding scheme was developed. the first three authors (a.a., j.k.g. and p.k.) worked together to develop the coding scheme and cross-validate the data. themes were derived inductively, conflicting ideas were discussed, and consensus was reached. ethical considerations this study was approved on 15 august 2012 by the kenya medical research institute national ethics and review committee, reference number: kemri/res/7/3/1. written informed consents were obtained from the participants. it was emphasised that participation in the study was voluntary, and there were no subsequent consequences for refusal or withdrawal. results our data identified five key educational challenges faced by children with asd at the coast. they include (1) inadequate diagnostic, identification and placement procedures; (2) lack of specialised trained personnel; (3) heavy workload for the teachers; (4) lack of social support for the teachers; and (5) inadequate educational materials at the centres. inadequate diagnostic, identification and placement procedures participants mentioned various diagnostic methods for asd. they included what was referred to as ‘clinical observation’, a review of developmental history, performance-based assessment, questionnaires, and a combination of parental reports and observations: ‘there are signs and symptoms that are in the books that you are supposed to pick like any other disease that we learn. so, there are specific things that you need to tease out. … mainly it is the clinical diagnosis.’ (fgd, clinical officer, participant 3, male) the teachers reported that by observing the children, they detect symptoms of asd, and use this to identify a child as having asd: ‘i can identify them through the outstanding behaviours they have, which are different from other people. for example, the habit of consistently doing a certain activity ….’ (interview 13, special education teacher, male) some of the educationalists mentioned that they would use the combination of both observation and parent-report questionnaires to identify children exhibiting autistic traits. during the discussions, we requested a copy of some of the measures. none of the measures used were directly designed to detect autistic features, and none had been validated or normed for use in this context. our discussions with the various stakeholders highlighted that there were no systematic approaches or guidelines on how to diagnose children having asd. related to the lack of diagnostic tools was the obvious lack of guidelines on placement. the lack of strategies for early diagnosis and placement is a major drawback for families of children with asd and other neurodevelopmental disorders. it emerged from the discussions that there was a general perception, especially amongst the clinicians, that in rural areas most children were diagnosed as having ‘asd’ whilst attending school. the clinicians noted that waiting for the child with developmental problems to be identified in the education system is problematic as it means that the children miss out the possibility of early diagnosis and intervention: ‘i think if we wait for teachers to make a diagnosis for us, it will be too late. i think the community should be given the information much earlier because, for those of us who live in town, we take our children to school (preschool) when they are 2 years old but back in the village the child will go to school when they are 7 years old. so, you can imagine a 7 years old child of, these symptoms would have shown much earlier ….’ (fgd, clinical officer, participant 1, male) the statement above led to further discussion on the potential role of mother–child health (mch) clinics. mother–child health clinicsare postnatal clinics, where parents are encouraged to take their children to receive vaccinations and monitor their growth and development until the age of 5 years. in the discussion by clinicians, it was noted that mch has the potential to detect children with asd and other neurodevelopmental disorders. however, as the workload is usually heavy, the child’s development is not assessed – hence, the opportunity for early diagnosis is lost: ‘let me add something when it comes to mch, the clinic has more than 100 patients queuing, and for you to diagnose a disease, you need to have enough time to examine that child. basically, what people are doing at the mch is forwarding and clearing, the queue is so huge, you alone are seeing 100 patients, so you check on the symptoms that have brought that child to the hospital that day. you are not examining the child holistically and trying to unravel what has not been told, so if we can increase the personnel, for people to have time and understand that we need to look at the child holistically, then we will be able to capture some of these symptoms. as for now, for one to be diagnosed with asd, it will have taken the time and they would have moved from hospital to hospital ….’ (fgd, clinical officer, participant 1, male) lack of specialised trained personnel many of those interviewed (13/21) participants expressed the view that most of the teachers in special education schools and units lacked proper training to meet the educational needs of children with asd: ‘i have not gotten any special training, but it is out of interest that i cooperate with mr. xxxx. i am interested in helping them, but i have not attended any course related to them (children with asd) ….’ (interview 3, special education teacher, female) the lack of proper training was considered to be a problem not just for the teachers but also for others who are working in the educational sector, such as those in charge of assessing and giving a diagnosis for the children: ‘the challenges that teachers are facing and even (i) personally am facing is to know exactly what is to be done with these children because as i have said, we have just undergone a kind of general course. if we were to get training particularly on autism, exactly what is to be done with these children, then we would have good progress ….’ (interview 12, educational assessor, male) inadequate educational materials at the centres other than the lack of trained personnel, the other challenge mentioned included the lack of teaching aids: ‘for those children (with autism), they need toys and play activities; they need puzzles, the wooden ones. those are needed in their school but most of the times they are not there.’ (interview 16, special education teacher, male) a heavy workload for the teachers teachers felt overworked. they noted that children with asd needed much attention, yet most of the time they had large classes comprising of children with different functional abilities. moreover, some of these children had very challenging behaviours making it difficult for the teachers to provide them instructions: ‘one of the challenges is that you need to have great care, so the teacher must pay a lot of attention to those children, so a lot of time is needed to take care of that child.’ (interview 1, ngo staff, male) ‘there is a bit of a challenge for us since we teach in integrated classrooms, where some children are high functioning while others one (e.g. autistic child) is in his/her own world. so, we are forced to group learners according to their ability levels ….’ (interview 3, special education teacher, female) ‘there are some behaviours that sometimes are extreme that are hard for me to cope with … so sometimes i fail to understand and overcome the extreme behaviour (aggressive behaviour, hyperactivity). that is a challenge that i have.’ (interview 13, special education teacher, male) lack of adequate support it was reported that the teachers of children with asd did not receive adequate support from the key stakeholders, for example, clinicians and ngo staff members. this lack of support comes in various forms such as focus on the ‘more visible’ disabling conditions, such as vision and hearing impairments: ‘what happens in special education, they look for those with deficits, most of which i think are either visual or hearing and speech.’ (fgd, clinical officer, participant 1, male) additionally, both teachers within the same schools and parents were perceived by some of those we interviewed as posing a challenge as some did not provide support to the teachers of children with asd: ‘another challenge is cooperation from other stakeholders. you can see that some caregivers are not cooperative, other teachers whom they teach with, the perception of these cases, some shy off, neglecting them, they do not even support them, morally or even materially (with classroom materials like pen, paper). these are challenges which they meet in the field.’ (interview 14, educationalist, male) ‘another challenge i think a teacher might face is the support from the caregivers. the caregivers leave these children to the teachers (in boarding schools) and forget about them, the constant monitoring of the child is absen.’ (interview 1, ngo staff, male) discussion this study set out to examine the challenges faced by children with asd and their teachers and parents. interviews and fgds identified numerous challenges: an absence of systematic identification and diagnostic procedures, improper placement, lack of trained personnel, shortage of learning materials and a lack of social support for the caregivers. this study indicates that there were no systematic or multidisciplinary approaches to identifying and diagnosing the children who are labelled and placed in special units for having ‘asd’; this is a problem that is shared with many other lowand middle-income countries (olusanya et al. 2018). the danger with the current educational diagnosis and placement is the potential for errors in diagnosis, where children who may not be on the asd spectrum may find themselves placed in the schools for children with asd, whilst those who are on the spectrum may lack the care they need. based on the interviews and fgds carried out, it seems likely that a significant number of children currently labelled as having asd may be experiencing other neurodevelopmental disorders and/or other intellectual disabilities. the study results emphasise the urgent need for developing measures and guidelines for the identification and placement of children with asd and other neurodevelopmental disorders in the kenyan education system. early and accurate detection of children with asd is crucial as earlier intervention promotes better prognosis (fuentes et al. 2021; lipkin et al. 2020). the measures to be developed need to be culturally appropriate, as this has been observed to be an important aspect of asd diagnosis (deweerdt 2012). in the management of children with asd and other neurodevelopmental disorders, early diagnosis, placement and proper remediation may potentially be key in ensuring enhanced long-term prognosis (lipkin et al. 2020; mozolic-staunton et al. 2020). the study findings reveal that these factors remain highly neglected in kenya’s education setting, which may contribute to the worsening of these children’s conditions and their inability to achieve their developmental and educational potentials. there is, therefore, a need for policymakers and educationalists to consider ways of addressing this inadequacy in services. many educational challenges are reported by the population we interviewed. the most common (based on the number of times raised) was the lack of training for both educationalists and teachers who are supposed to conduct the diagnosis, place and educate the children. the adverse impact of children having to be attended to by unskilled personnel cannot be overestimated. studies indicate that effective teaching is a key component to successful childhood outcomes for any children, and especially so for children with disabilities (simpson, mundschenk & heflin 2011). in a review of literature on the impact of effective teaching, it was observed that children who had an ineffective teacher for three consecutive years performed 50 percentile points lower than peers of comparable abilities and skills who were taught by an effective teacher (simpson et al. 2011). many of the challenges we observed had also been reported in a published work from nairobi, where one of the interviewees said: ‘families with children living in rural areas are more likely to raise a child with autism without ever receiving a proper diagnosis, and even if they did, it is likely there would not be a treatment centre located near their home. if a school in a rural part of our country does happen to have a special unit, this classroom will most probably be full of children, each with a unique disability, taught by a teacher with minimal training in what we call “special needs education”. these teachers are unable to give each child the individualized lesson plans they will require to learn and succeed, despite the best intentions of the teaching staff.’ (interview a8) (riccio 2011:8) the congruence between the results from different parts of the country implies that there is an urgent need to take steps targeted at addressing these challenges. the challenge on placement warrants further discussion. who and how to educate children with asd remains a topic of continuing debate, even in resource-rich settings with longer histories of service provisions (simpson et al. 2011); this indicates the complexities of the issues involved. in many regions of the world, the trend is towards inclusive education (i.e. having children with asd learning in the mainstream classes). however, as discussed widely in the literature, successful inclusive education requires contextual consideration on how this would be implemented, including the move beyond inclusion to equity and the place of special education in this shift (florian 2019). it would also require investment in preparing teachers adequately, taking care to instruct within the remits of each child’s functional abilities and possibilities for extra individualised care in the form of individual education plans, where needed. moreover, teachers must be provided with an adequate working environment, especially ensuring that the teacher–student ratio is optimal so that the teachers can adequately instruct the children. therefore, in settings such as ours, the development of appropriate facilities for children with asd and their families, needs to take into consideration individual needs, and be based on extended dialogue between the different stakeholders. the current educational system places a heavy burden on teachers who may be overwhelmed with educating children; they are not well-prepared to educate. having large classes of children with different educational needs makes it difficult for them to meet the needs of each child within the classroom context. this situation not only results in underperformance but might also lead to burnout and emotional stress amongst teachers. teachers of children with special needs are already at an elevated risk of experiencing burnout and stress; this is exacerbated by factors such as poor self-efficacy (i.e. a lack of confidence in one’s ability to meet their responsibilities) (wisniewski & gargiulo 1997). research evaluating the impact of the burden on teachers’ emotional well-being and job performance is warranted to understand the kinds of programmes that should be put into place to address the needs of the teachers and to enhance their well-being and productivity. limitations this study focused only on three administrative locations within the coastal regions of the country, which may potentially limit the generalisability of our findings. as the study results indicate, there are potentially many problems with the diagnostic procedures in the kenyan coastal system. this means that we possibly have many children with other neurodevelopmental disorders; other children showing autistic traits, especially those with mild and moderate symptoms, may not be in the educational setting. conclusion this study highlights some of the gaps in the educational sector, especially at the kenyan coast, regarding children with asd. there is an urgent need for evidence-based identification, placement and rehabilitation services to be put in place to meet the educational needs of children with asd and other neurodevelopmental disorders. acknowledgements the authors would like to thank the participants for agreeing to take part in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.a. conceptualised and designed the study, supervised data collection, data analysis and drafted first draft of manuscript. j.k.g. designed the study, data collection, data analysis and critically reviewed the manuscript. p.k. assisted with data analysis and writing up of the manuscript. k.r. and d.a. assisted with data collection and interpretation of the data. c.n. conceptualised and designed the study, assisted with data interpretation and critically reviewed the manuscript. funding information this research work was funded through the cheryl & reece scott professorship award to prof. charles newton. data availability as this is a qualitative study, anonymising the data may be difficult, as such we may not make the transcripts open access. however, if raw data are needed, 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(ahead-of-print). https://doi.org/10.1108/aia-11-2020-0066 wisniewski, l. & gargiulo, r.m., 1997, ‘occupational stress and burnout among special educators: a review of the literature’, the journal of special education 31(3), 325–346. https://doi.org/10.1177/002246699703100303 article information author: mbulaheni maguvhe1 affiliation: 1department of inclusive education, university of south africa, south africa correspondence to: mbulaheni maguvhe email: maguvmo@unisa.ac.za postal address: 10 bastion street, danville extension 5, protea west, south africa dates: received: 06 may 2015 accepted: 08 sept. 2015 published: 04 nov. 2015 how to cite this article: maguvhe, m., 2015, ‘teaching science and mathematics to students with visual impairments: reflections of a visually impaired technician’, african journal of disability 4(1), art. #194, 6 pages. http://dx.doi.org/10.4102/ajod.v4i1.194 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. teaching science and mathematics to students with visual impairments: reflections of a visually impaired technician in this original research... open access • abstract • introduction    • literature review • research questions • methodology    • case study research    • background information on the participant • results and discussion    • theme 1: accessibility of mathematics and science curriculum    • theme 2: the state of teacher readiness and preparedness in teaching mathematics and science    • theme 3: teacher training and personal development    • theme 4: relevant teacher training programmes    • theme 5: in-service training    • theme 6: mathematics and science as learning areas for the blind    • theme 7: blind and partially sighted learners’ mathematics and science setbacks • recommendations • conclusion • acknowledgements    • competing interests • references abstract top ↑ this study reports on factors that limit the participation of blind and partially sighted learners in mathematics and science education. since the teacher, still remains one of the most crucial factors in any education system, the researcher deemed it important to investigate the role of the teacher as understood by a blind technician in promoting the participation of blind and partially sighted learners in mathematics and science subjects, which few of these learners take beyond primary school. a case study was conducted interrogating a blind technician, who regards himself as an unqualified scientist, in his understanding of various school factors that could entice blind and partially sighted learners to participate in mathematics and science education, and to promote their retention in related professions. the participant thus drew from his own experiences of the school environment and wider concentric social institutions. a semi-structured interview schedule was followed and the responses were recorded by mutual consent. analysis was conducted based on questions put to the participant. the study revealed that teacher motivation and mentorship in mathematics and science methodologies and the use of tools for learner empowerment are lacking. it further revealed that teachers lack the requisite skills in special education to harness learner potential in mathematics and science. this situation necessitates government action in teacher training and development. introduction top ↑ this research study was in the form of a case study. the study drew on the experience of one blind male technician. the technician has great ambitions in the pursuit of science and technology, but with little support. the aim of the study was to understand the teaching and learning playing field. the focus was on what could be done to increase the involvement of blind and partially sighted learners in mathematics and science education. of the 22 registered schools for blind and partially sighted learners, only two (prinshof in gauteng and pioneer in western cape) offer science and mathematics to blind and partially sighted learners. this means that approximately 600 learners out of 3000 learners (learners that these schools together could accommodate) benefit from science and mathematics subjects. the participant considers teachers as the primary resource that ought to be equipped with knowledge, skills, attitudes and values to enable them to inspire and stimulate learners’ interest in the sciences. given the fact that teachers of blind and partially sighted learners play multiple roles in shaping the lives of learners (spungin & ferrell 2007), teachers should be the focus of empowerment (carl 1995) so that they could in turn empower their learners. this study has wide application within and beyond south africa’s borders. however, problems with teaching mathematics and science for the blind and partially sighted learners are also experienced elsewhere (design science 2011; texas school for the blind and visually impaired 2007). sahin and yorek (2009) support the previous argument when they assert that learners have regarded science as a difficult subject because of difficult and abstract concepts. they continued arguing that science teaching has been dependent mostly on visual instruction. this makes it difficult for partially sighted learners included in a regular classroom to learn the concepts. blind learners on the other hand, have no visual input at all. they need to learn using the other senses such as touching and hearing. the fact that this study was conducted in south africa is of potential benefit to researchers and teachers, particularly in africa where science and mathematics subjects would play a crucial role in industrial development. south africa is the largest economy in africa. it still provides resources for research and development, which makes the production and distribution of knowledge comparatively cheaper and the audience for this study larger than the national platform. this study could be of value to education practitioners in other countries across the globe as well, since mathematics and science education for the blind and partially sighted learners still requires practitioners from different parts of the world to share ideas on best practices. literature review while science and mathematics education is easily accessible to fully sighted children, it is less accessible to blind and partially sighted children since many of its concepts are presented graphically, and there are many concepts that cannot be explored by touch and are put across through visual observation (design science 2011; kalra et al. 2009; maguvhe 2005; sahin & yorek 2009). for several reasons, the chances are slim for blind and partially sighted children to pursue a science education (schleppenbach 1996). many people fear sight loss more than they do other impairments (dickerson, smith & moore 1997) and tend to think that without sight, one would not be able to do any of the most taxing mental activities that sighted people are typically able to do. the connotation being that blindness overlaps with limited capacity (maguvhe 2003:118). the fact that blindness is generally the most dreaded disability worldwide invokes societal sanctioning for those belonging to this group (dickerson et al. 1997). this is to the extent that human attitudes compound the negative effects of physical barriers to the education of blind and partially sighted learners (fraser & maguvhe 2008). the absence of accessible media for the presentation of concepts in fields of study with a large amount of complex visual information such as mathematics, engineering, physics, chemistry and biology has traditionally been highlighted as a legitimate reason to conceal these areas of learning from large-scale entry and pursuance by the blind and partially sighted learners (cryer 2013; schleppenbach 1996). in cases where apparatus have been modified for use by blind and partially sighted learners, and information presented in accessible formats, this group of learners have been observed to perform competitively with their typically sighted counterparts (sahin & yorek 2009). hence, the main reason why blind and partially sighted learners have been unable to participate in pure sciences in large numbers is more about the lack of appropriate access technologies and teacher attitudes than about the psychological incapacity of blind and partially sighted learners themselves. owing to a combination of attitudinal barriers to the participation of blind and partially sighted learners in activities that are significant to society, and society’s own limitations in creating technologies that enable blind and partially sighted learners to interface with scientific information, there has been a paucity of blind and partially sighted learners entering and excelling in the fields of science and mathematics. consequently, there are few blind and partially sighted mentors and role models to encourage members of the blindness sector to pursue their studies in the hard sciences as professional niches (schleppenbach 1996). the literacy rate among the blind and partially sighted in developing countries is below 3% (kalra et al. 2009). since children with visual impairments have marginal chances of starting school and going through basic education, it is critical to appreciate that the actual number of the blind and partially sighted pursuing the hard sciences in developing countries is small, given the general paucity of enabling resources for access to information. an even gloomier picture emerges of the proportion of blind and partially sighted learners who pursue science and mathematics as lifelong professions. most of these learners do not take mathematics and science subjects mostly because their teachers give them the impression that these subjects are inaccessible to learners with sight problems. the underlying problem is that often the teachers themselves do not have adequate direct experience with teaching blind and partially sighted learners (sahin & yorek 2009; stefanich & norman 1996:51). consequently, many teachers find it difficult to help their learners with appropriate knowledge acquisition strategies for science and mathematical subjects. through the attitudes of teachers, many schools for the blind and partially sighted learners have no conviction that their own learners are good enough to do well in the pure sciences. however, the fact remains that blind and partially sighted learners are endowed with the same cognitive capacity as typically sighted learners (kumar, ramasamy & stefanich 2001). those schools therefore do not offer science and mathematics to their entire student body. because of a combination of attitudinal and technological limitations in schools, few blind and partially sighted learners become physical and biological scientists. according to maguvhe (2005), many of these learners who are from schools for the blind and partially sighted tend to affirm mainstream attitudes, while smaller numbers think independently and challenge prevailing school expectations. survivalist attitudes are important for every learner and quintessential to the success of blind and partially sighted learners if they aspire to overcome the social factors that militate against their educational pursuits. according to education white paper 6, special schools will be used as resource centres for inclusive education (department of education 2001). such schools therefore ought to be in a position to act as examples even in the degree and variety of equipment they stock and the subjects they offer to their learners. the south african government recognises science, mathematics and several other professions that are dependent on these subjects (such as medicine) as scarce and critical skills. jobs that apply those skills must also be accessible to blind and partially sighted learners. to achieve the quota of people with disabilities in different professional fields, especially in fields considered scarce and critical (fields that matter most for technological development), there needs to be a firm resolve to educate learners with disabilities in those fields. this research focused specifically on the involvement of blind and partially sighted learners in these core fields of study. schleppenbach (1996) suggests two areas of learner learning that need to be covered when teaching blind and partially sighted learners their educational and technological needs. blind and partially sighted learners must from time to time be consulted in order to determine ways of accommodating them in line with their suggestions on their academic and technological needs. hence, the area of learning one finds difficult is not isolated from the kind of technological assistance the learner deems helpful. the mentor’s inputs also contribute to the formation of the ultimate programme to be used. research questions top ↑ the researcher used the following question to collect data: how does a blind technician experience science and mathematics education in a special school? methodology top ↑ case study research a case study is a detailed study of ‘a single entry’ (mcmillan & schumacher 2010:344), such as ‘an activity, event, process or individuals’ (creswell 2008:476; david & sutton 2011:165). thus, case studies characteristically collect large quantities of data to enable the researcher to develop patterns of thought, which ultimately produce meaningful information on single cases. although findings from case studies are derived from in-depth analysis of phenomena, they are not generalisable because they examine a limited number of phenomena with characteristics of interest to the researcher. however, insights from case studies lead to wider studies, which are more generalisable. the current study is a ‘case-focused study’ of an individual with unique characteristics of interest to the researcher (mcmillan & schumacher 2010:345). background information on the participant the participant who gave inputs in this study is a totally blind, 35-year-old man who holds a matric certificate for his formal education. he has 13 years’ working experience. he lacks the ability to use visual stimuli to integrate environmental information meaningfully. further, the participant uses a white cane to help him navigate his way. a face-to-face interview was held with only one participant, owing to his unique technical acumen in a science-related field an area that few blind and partially sighted learners pursue in south africa. it should be noted that, since this was a small case study, the chance of many teachers and former learners expressing divergent views does exist. the researcher deemed it necessary to conduct a follow-up telephonic interview to verify the participant’s responses and comments recorded during the face-to-face interview. data was presented in thematic sections, which arose from responses received from both the face-to-face interview and the follow-up interview. the data was then qualitatively examined for meaning. the views of the blind technician were sought on the visibility, benefits and challenges of mathematics and science education initiatives in south africa. the responses of the blind technician were interpreted hermeneutically with reference to documented national policies and published international developments in mathematics and science education for blind and partially sighted learners. results and discussion top ↑ it was necessary to identify a blind participant, who had gone through science and mathematics education and succeeded because of his ambition and goal-directed effort, to understand what he considered effective methods and strategies to mediate science and mathematics teaching and learning. the fact that the case study did not solicit information from a teacher was considered revealing because the researcher wished to determine the experiences of ‘a product of teaching’ not those of the teacher. the researcher felt that an interview with a direct insider in the teaching process might not be the best source of information on the lived experiences of blind and partially sighted learners in subject areas. the researcher believes that conducting similar case studies in different countries could encourage blind and partially sighted readers to use personal interest to meet the challenge of pursuing science and mathematics. furthermore, conducting similar case studies in other countries could bring to light questions that teachers and policy makers need to answer through appropriate provisioning and prompt information exchanges. each of the themes will be discussed below in order to present the results of the interview. important excerpts from the interviewee’s responses will also be highlighted. theme 1: accessibility of mathematics and science curriculum it emerged from this study that the mathematics and science curricula are accessible to the blind and partially sighted learners. this finding was in line with that of kumar et al. (2001) – namely that the blind and partially sighted learners have the same mental capacity to comprehend mathematics and science – as well as sahin and yorek’ s (2009) conclusion that blind and partially sighted learners merely need to be appropriately accommodated to enable them to perform as well as their sighted counterparts in those sciences. varieties of technologies are now available to allow for the participation of blind and partially sighted learners in mathematics and science education. according to the participant, the main problem is that teachers are not well equipped to teach mathematics and science to blind and partially sighted learners. the participant is of the view that teachers lack practical knowledge of possibilities of blind and partially sighted learners in mathematics and science hence their doubts about the capacity of their learners in those subjects. they also lack the requisite knowledge of blindness and visual impairment to enable them to provide for the needs of their learners in mathematics and science. under the present circumstances, learners thrive on their personal ambitions and initiatives. the following verbal quotation illustrates these findings: ‘i believe the curriculum is accessible. there is a lot of technology for braille users today, which includes math and science kits that we can understand. it is the teachers themselves who make it inaccessible. they do not believe in us. this makes them not to go all out giving their best when teaching. mere knowledge of math or science without knowledge of how to address the needs of the learner is not enough. oh! let me tell you a short story. look, i am blind. through trial and error, i am now one of the few blind guys who can repair braille machines. when i attended a course for repairing machines in worcester, i was the only blind person among the sighted. people wondered what i was there for. i said to the trainer ‘nnakebatla setifikeiti’ [i want the certificate. otherwise i know i can repair machines]’. theme 2: the state of teacher readiness and preparedness in teaching mathematics and science the study further revealed that teachers were not well trained to teach the blind and partially sighted learners, and lacked the necessary innovation where resources for the teaching of science and mathematics were limited. this finding concurs with that of sahin and yorek (2009), namely that many teachers do not have direct experience in teaching blind and partially sighted learners. they do not know what to do to improve the learning conditions of their learners in cases of marginal resources. the following verbal quotation illustrates these findings: ‘today’s teachers, whether they are prepared or not, one cannot tell. it seems as if they are not. why are they reluctant to teach mathematics and science? they put the blame always on lack of resources. they put the blame on lack of training via workshops. they put the blame on blind and partially sighted learners who cannot understand graphs, maps, tables and so on. teachers in the olden days, used to make a plan, [i] mean improvisation when resources were not enough. they did not always play blame games’. the response shows that, if teachers make an effort, the blind and partially sighted learners can benefit from mathematics and science education. the participant demonstrated his skills to the researcher by successfully repairing an electric heater and a kettle. the demonstration further illustrated sahin and yorek’ s (2009) finding that the blind and partially sighted have equal competencies than the typically sighted, given accessible media for learning. such findings are very relevant to share with teachers and academics in other countries because they inspire the blind and partially sighted learners to try out their talents and do more in science and mathematics. theme 3: teacher training and personal development the study, through opinions expressed by the participant, revealed that teachers lack specialist training to teach blind and partially sighted learners, including rigorously supervised teaching practice during such training. as a result, they were not competent in transferring their knowledge to learners with special learning needs, particularly the blind and partially sighted. these findings are closely related to the observations made by the catholic education office canberra (2011), namely that teachers are the least confident in undertaking assessment procedures. more recently, section 27, which advocates for social justice, instructed by the south african national council for the blind, reported a dire lack of learner teacher support material (ltsm) and low levels of teacher specialisation in both schools for the blind and partially sighted, as well as full service schools, which they had to provide with consultancy (hodgson & khumalo 2015). spungin and ferrel (2007) also highlight the multiple roles of a teacher for the blind and partially sighted that are not fulfilled in the current educational terrain in south africa. by implication, teachers find it difficult to understand their learners through learners’ output. that knowledge gap implies a lack of specialist knowledge, which would otherwise lead to proper diagnosis and informed teaching. the following verbal quotation illustrates these findings: ‘like i indicated above, teachers complain about this and that. well-prepared teachers do not have time to complain. they know they have good skills to teach the blind learners. i think they lack specialist training for teaching the blind learners and just rely on their knowledge of particular subjects, so they have no dedication to their mandate. if their thinking does not change, it will be years and years before we produce well-trained blind mathematicians and scientists’. teachers who are not specialists cannot effectively articulate subject matter to blind and partially sighted learners. sahin and yorek (2009:19) confirmed similar findings in turkey, stating that teachers are unable to impart their knowledge of methods, with the result that not all learners are able to participate optimally. the current result indicates a dire need for training of specialists, a problem that is found in many developing countries. the study is therefore relevant to the needs of other african countries, as it indicates the need for national or regional colleges that train specialist teachers for learners experiencing various barriers to learning. in the zimbabwean model, teachers go for special education training only after specialising in the teaching of various primary and secondary school subjects – such as science and mathematics for early childhood learners, infants, juniors and secondary school learners in their mainstream teacher education. those who choose to proceed to higher diploma studies in special needs education make a choice to specialise in different areas of special education, but they receive generic courses that equip them to meet the needs of learners who have learning needs beyond the teachers’ specialist niches. the results of this study give opportunities for a sub-regional audit of appropriate teacher training models. theme 4: relevant teacher training programmes to show the importance of teaching learners different methods of doing things, different authors illustrated how they successfully taught braille users to master scientific and mathematical concepts. osterhaus (2002) suggested how to set up a mathematics technology corner, explaining methods of teaching graphs to blind and partially sighted learners. fraser and maguvhe (2008) illustrated how to use a combination of three-dimensional models to capture the meaning of two-dimensional drawings (such as the structure of a cell). because many teachers lack the practical skills, they require at least a diploma in special education, with specialisation in blindness and partial sightedness, in addition to their mathematics or science qualifications to enable them to facilitate learning effectively. the following verbal quotation illustrates these findings: ‘prof, we need people like you who are also visually impaired like us to advocate on behalf of the helpless [meaning blind and partially sighted learners]. you must develop training programmes at your institution for teachers for the blind and partially sighted learners. a hands-on qualification such as a diploma in special education with specialisation in visual impairment would do. government should appoint people who are well qualified to teach the blind who also specialise in blind matters. perhaps, if teachers could also be on probation for a long time, they [government] may find the right ones’. while the response points to a good training avenue, the reality is that there is currently no university offering that type of qualification. the university of south africa used to offer such diplomas, but it stopped. the same university is only planning to offer such diplomas again in the future. the results of this study point to the need for the south african government to look for immediate training solutions such as sending some teachers to train in special needs education skills, which are in short supply, in other african countries or even further afield. theme 5: in-service training the study further revealed, through opinions of the blind technician, that mathematics and science teachers need to attend regular staff development workshops covering selected topics in mathematics, science and accommodation suitable for blind and partially sighted learners. the wide publicity of this and similar research will inspire teachers to arrange workshops and seminars with colleagues in other african countries and plan subregional teacher development possibilities. this will enable them to keep abreast of curriculum demands, new developments in their subject areas and emerging technologies for accommodating their learners’ educational and wellness needs. it also emerged, according to opinions expressed by the participant, that teachers have to develop information-gathering skills through actual research. to that end, they have to create networks with other area specialists the world over. the following verbal quotation illustrates these findings: ‘they [teachers] should have workshops for mathematics and science in addition to joining university programmes that equip them to understand the learners they are teaching. they can as well network with colleagues here and abroad and exchange ideas on how to teach blind learners. i mean their [blind and partially sighted learners’] abilities and limitations, and how to make a plan to overcome the limitations’. theme 6: mathematics and science as learning areas for the blind the present study further revealed that mathematics and science education is essential for the blind and partially sighted. this is important for these individuals’ economic stability and personal physical health. hence, these subjects are essential, not only for the continued survival of the blind and partially sighted learners, but also for improving their quality of life. the higher applications of mathematics and science for daily living alluded to by the participant in this case study might be shared by many people who are differently abled throughout the world. this should take into account the fact that mass awareness campaigns on health and street wisdom do not cover all sectors of human populations equally effectively, owing to factors such as limited knowledge of sector-specific communication strategies and the paucity of resources for all-inclusive coverage. the fact remains that a lack of knowledge is perilous to human life. the following verbal quotation illustrates these findings: ‘yes, yes, yes. one cannot live without mathematics and science. even those who live on the disability grant need to have knowledge of basic mathematics and science for survival. some of the problems we have with living from hand to mouth arise from a lack of that info. some of our problems with containing epidemics are due to a multi-generational bankruptcy in science. they need to add, subtract, multiply and divide their money’. theme 7: blind and partially sighted learners’ mathematics and science setbacks the study revealed that blind and partially sighted learners find it difficult to pursue mathematics and science subjects because the resources are limited and teachers are not prepared to do their best to resolve the problems they encounter in putting the subject matter across to their learners. it was also revealed that blind and partially sighted learners themselves have no volition to improve their circumstances, because their total learning environments fail to assist them optimally (fraser & maguvhe 2008:86). blind and partially sighted learners need to be proactive to improve their performance in mathematics and science. the following verbal quotation captures the essence of these findings: ‘yes, lack of resources, unprepared teachers, experiments, graphs, maps and tables are some of the setbacks the blind learners encounter when doing or want to do mathematics and science. however, this should not be an excuse not to teach them’. recommendations top ↑ the author of this article recommends that proper support be provided and reasonable accommodation measures be implemented to ensure effective mathematics and science teaching/learning. this sentiment is also echoed by disability rights (2015) when it argues that proper teaching and learning would take place if duty bearers take responsibility for exclusion, marginalisation and discrimination in education and are held accountable, and if rights holders would have access to recourse when their rights have been violated. the previous stated source further argues that it is not the responsibility of the parents of blind and partially sighted children to go up and down seeking a door that will open, spending the family’s food budget on transport to move from one school to the next. it is the responsibility of all government officials in the value chain to ensure that blind and partially sighted learners access education through suitable assessment and support by the relevant district education offices. the author of this article further suggests research in the following areas: would mathematics and science be the preferred options for many blind and partially sighted learners? would mathematics and science be taught more efficiently and effectively if government could introduce an ongoing teacher training programme to equip teachers with skills in both areas of special needs education that pose barriers to their learners and teaching approaches for particular topics in their subject specialisation? could mathematics and science be taught more comprehensively with the use of available technologies if principals were familiarised with (and teachers were thoroughly trained in) the use of emerging technologies? conclusion top ↑ this case study attempted to determine the factors affecting the participation of blind and partially sighted learners in science and mathematics in schools for the blind. from the findings of the study, it can be concluded that successful mathematics and science education for blind and partially sighted learners requires teacher empowerment through rigorous training and development on both approaches to subject matter and general awareness to the unique learning needs of learners with various degrees of visual loss. it must be noted that, since tsshis was a small case study, the chance of many teachers and former learners expressing divergent views exists, although the findings corroborate the results of similar studies discussed in the literature review. although case studies are based on such small samples that their results are less generalisable, experiences of people in special populations might have some commonalities. this study could inspire the quest to conduct quantitative studies in several african countries in order to understand the perceptions of former learners as products of the teaching/learning process to determine the needs of current regional education systems. acknowledgements top ↑ competing interests the author declares that he has no financial or personal relationships that may have inappropriately influenced him in writing this article. references top ↑ carl, a.e., 1995, teacher empowerment through curriculum development: theory into practice, juta, kenwyn. catholic education office canberra, 2011, teachers’ guide to assessment, archdiocese of canberra and goulburn, canberra, viewed 1 february 2015, from http://www.det.act.gov.au/teaching…learning/teachers_guide_to_assessment creswell, j.w., 2008, research design: qualitative, quantitative, and mixed methods approaches, sage publications, london, thousand oaks, ca, new delhi/singapore. cryer, h., 2013, teaching stem subjects to blind and partially sighted students: literature review and resources (literature review #6), rnib centre for accessible information, birmingham, viewed 16 january 2015, from https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0cb0qfjaaahukewir4lgqwrpiahxf7rqkhu1zcge&url=https%3a%2f%2fwww.rnib.org.uk%2fsites%2fdefault%2ffiles%2f2013_05_teaching_stem.docx&usg=afqjcnhkz8nnthoq8td8zzzcpwqmj9mpzq david, m. & sutton, c.d., 2011, social research: an introduction, sage publications, london, thousand oaks, ca, new delhi/singapore. department of education, 2001, education white paper 6. special needs education: building an inclusive education and training system, department of education, pretoria. design science, 2011, new math to speech technologies to help blind and visually impaired students master mathematics, viewed 22 june 2015, from https://www.dessci.com/en/company/press/releases/110524.html dickerson, l.r., smith, p.b. & moore, j.e., 1997, ‘an overview of blindness and visual impairment’, in j.e. moore, w.h. graves & j.b. patterson (eds.), foundations of rehabilitation counseling with persons who are blind or visually impaired, pp. 1–24, american foundation for the blind, new york. disability rights, 2015, email, 20 august. fraser, w.j. & maguvhe, m.o., 2008, ‘teaching life sciences to blind and visually impaired learners’, journal of biological education 42(2), 82–89, viewed 01 february 2015, from http://repository.up.ac.za/bitstream/handle/2263/6236/fraser_teaching(2008).pdf?sequence=1 hodgson, t.f. & khumalo, s., 2015, south africa: schools for the blind in ‘shocking’ state, viewed 21 june 2015, from http://mg.co.za/article/201506-11-blind-schooling-in-shocking-state kalra, n., lauwers, t., dewey, d., stepleton, t. & dias, m.b., 2009, ‘design of a braille writing tutor to combat illiteracy’, information systems frontiers 11(2), 117–128. http://dx.doi.org/10.1007/s10796-009-9171-2 kumar, d., ramasamy, r. & stefanich, g., 2001, ‘science for students with visual impairments: teaching suggestions and policy implications for secondary educators’, electronic journal of science education 5(3), 1–4. maguvhe, m.o., 2003, ‘being a blind researcher in south africa: a critical assessment’, perspectives in education 21(3), 117–119. maguvhe, m.o., 2005, ‘a study of inclusive education and its effect on the teaching of biology to learners with visual impairments’, thesis (abstract), department of curriculum studies, faculty of education, university of pretoria, pretoria. mcmillan, j.h. & schumacher, s., 2010, research in education: evidence-based enquiry, 7th edn., pearson, boston. osterhaus, s., 2002, susan’s math technology corner: teaching a blind student how to graph on a coordinate plane: no tech, low tech, and high tech tools, viewed 14 january 2015, from http://www.tsbvi.edu/math/graphing.htm sahin, m. & yorek, n., 2009, ‘teaching science to visually impaired students: a small-scale qualitative study’, us-china education review 6(4), 19–26. schleppenbach, d., 1996, ‘teaching science to the visually impaired: purdue university’s visions lab’, information technology and disabilities e-journal 3(4). spungin, s.j. & ferrell, k.a., 2007, ‘expansion of the role and function of the teacher of students with visual impairments: providing for students who also have severe multiple disabilities’, position paper for the council for exceptional children (division of visual impairment), viewed 19 january 2015, from http://www.tsbvi.edu/pds/1988-xpansion-of-the-role-of-the-teacher-of-students-with-visual-impairments-providing-for-students-who-also-have-severemultiple-disabilities stefanich, g.p. & norman, k.i., 1996, teaching science to students with disabilities: experiences and perception of classroom teachers and science educators, special publication of the association for the education of teachers in science. texas school for the blind and visually impaired, 2007, ‘evals evaluating visually impaired students’, viewed 22 june 2015, from http://www.tsvbi.edu/curriculumapublications?catdi=3&id=1030:evlsevaluatingvisuallyimpaired-students abstract introduction methods results discussion conclusion acknowledgements references about the author(s) sara h. rotenberg nuffield department of primary care health sciences, university of oxford, oxford, united kingdom international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom calum davey international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom emily mcfadden nuffield department of primary care health sciences, university of oxford, oxford, united kingdom citation rotenberg, s.h., davey, c. & mcfadden, e., 2024, ‘women with disabilities’ use of maternal care services in sub-saharan africa’, african journal of disability 13(0), a1327. https://doi.org/10.4102/ajod.v13i0.1327 original research women with disabilities’ use of maternal care services in sub-saharan africa sara h. rotenberg, calum davey, emily mcfadden received: 31 aug. 2023; accepted: 25 may 2024; published: 31 july 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: quality maternal health care is central to the sustainable development goals efforts to reduce maternal mortality, yet there remain limited quantitative data on maternal care inequities for women with disabilities in sub-saharan africa. objectives: this study aims to understand the differences in maternal care providers for women with and without disabilities. method: we used multiple indicator cluster surveys from 13 sub-saharan african countries conducted between 2017–2020. we used logistic and multinomial logistic regression to examine the relationship between disability (washington group definition) and antenatal care attendance and the type of care provider for antenatal care, skilled birth attendance, and postnatal and postpartum checks. all analyses were adjusted for age, wealth, country, and location. results: the sample included 10 021 women, including 306 (3.1%) women with disabilities. there were small absolute and no relative differences in antenatal care attendance, qualified antenatal care provider, postnatal, and postpartum checks, for disabled and women without disabilities. women with disabilities had some evidence of higher odds of having a doctor at their birth compared to women without disabilities (aor = 1.52, 95% ci: 0.99–2.33). conclusion: this study shows small absolute and no relative differences between women with and without disabilities for antenatal access and provider types for maternal care, though these findings are limited by a small sample and no data on care quality, acceptability, or outcomes. more research on care quality and outcomes is needed. contribution: this study is the first quantitative, multi-country study in sub-saharan africa to examine maternal care seeking patterns, demonstrating important data on maternal health indicators for women with disabilities. keywords: disability; maternal health; antenatal care; health equity; post-natal care; skilled birth attendance. introduction quality maternal healthcare is central to the sustainable development goals (sdgs) efforts to reduce maternal mortality (un women 2022). increasing access to routine antenatal care (anc), skilled birth attendance, postnatal, and postpartum care can help address high rates of pregnancy-related mortality, particularly in sub-saharan africa where maternal mortality remains unacceptably high (alam et al. 2015; dahab & sakellariou 2020; yaya & ghose 2019). critical shortages of health workers have become barriers to expanding maternal health services at sufficient rates (okoroafor et al. 2022), which has led to a renewed focus on inequities in maternal healthcare across socio-economic (atake 2021), urban and/or rural (sidze et al. 2021), and educational (wang et al. 2021) axes. despite 12.8% of the sub-saharan african population experiencing disability in some form there remain limited data on maternal care inequities for women with disabilities in sub-saharan africa compared to women without disabilities (world health organization [who] 2022). women with disabilities face similar barriers in seeking maternal care as they do for healthcare more broadly, including health workers’ poor attitudes, limited access to transportation to travel for care, and a lack of inclusive health information (ganle et al. 2016; heideveld-gerritsen et al. 2021; kuper & heydt 2019). there is some evidence that women with disabilities have higher rates of mortality, complications, and worse quality care in high-income and some sub-saharan african settings (apolot et al. 2019; ayiasi et al. 2013; brown et al. 2022; ganle et al. 2016; hameed & asim 2020; heideveld-gerritsen et al. 2021; malouf, henderson & redshaw 2017a, malouf et al. 2017b, mitra et al. 2017a, 2015; tarasoff et al. 2020). however, quantitative research on maternal care for women with disabilities is severely lacking in sub-saharan africa. the inclusion of the washington group short set (wg-ss) in round 6 of the united nations international children’s emergency fund (unicef)-supported multiple indicator cluster surveys (mics) provides an opportunity to investigate inequities in key maternal care indicators and access to trained health workers for women with disabilities compared to women without disabilities (hancioglu & arnold 2013; khan & hancioglu 2019; unicef 2017). accordingly, we analysed data from 13 countries in sub-saharan africa that had completed the mics6 survey to compare women with disabilities’ care seeking patterns for maternal care to women without disabilities. we examined patterns in seeking anc and from whom they sought antenatal care, skilled birth attendance, and postnatal and postpartum checks. methods data source the mics are the largest set of internationally comparable household datasets used to measure the health and development status of women and children in lowand middle-income countries (khan & hancioglu 2019). data were from the sixth round of the mics, conducted between 2017 and 2020 in 13 sub-saharan african countries (central african republic, chad, democratic republic of congo, gambia, ghana, guinea-bissau, lesotho, madagascar, malawi, são tomé and príncipe, sierra leone, togo, and zimbabwe). analysing each individual dataset was not possible because of small sample sizes, so a pooled sample of all countries in the region was used. disability measures the mics6 surveys have an adult functioning module, which uses the wg-ss to assess functional impairment in individual men and women aged 18–49 (cappa et al. 2018; loeb et al. 2018). this takes about 10 min to administer and measures impairment in six functional domains: seeing, hearing, walking or climbing steps, remembering or concentrating, self-care, and communication (loeb et al. 2018; zia et al. 2020). in this study, we utilised the washington group on disability statistics guidelines thresholds for disability. women were coded as disabled if they reported functional difficulty in any of the domains (i.e., ‘cannot do at all’ or ‘a lot of difficulty’ to any of the questions). women who reported functional difficulty in at least one domain, but had other domains missing were coded as disabled as the missing sections do not impact their disability status for the purposes of this study (the washington group on disability statistics n.d.). women who responded ‘no difficulty’ or ‘some difficulty’ to all functional domains were coded as women without disabilities. individuals with missing data on sex, who had not given birth in the last 2 years, or had missing data for all wg-ss questions were excluded, as their birth history and disability status could not be determined (the washington group on disability statistics n.d.). a sensitivity analysis was conducted and our treatment of missing data were not found to impact the results. outcomes this study measured maternal care for a woman’s most recent birth and had four main outcomes: antenatal care coverage, skilled birth attendance provider, post-natal care provider, and postpartum care provider. antenatal care attendance was measured by whether or not a woman saw someone (trained or untrained) for antenatal care at least once during a pregnancy in the last 2 years. variables measuring the provider type for antenatal care, skilled birth attendance, were grouped into nurses/midwives, physicians, community carers (traditional birth attendant, community health worker), and untrained individuals or no one (relative or friend, no one) based on who’s international standard classifications of occupations (isco-08) (international labour organisation 2011) compared to the mics survey response options. these groupings were selected based on the who guidelines for maternal healthcare that encourage task-shifting from physicians to trained health workers for maternal care, such as nurses/midwives (ed. who 2017). community health workers were included in the community carers second group as the who guidelines recommend their participation in providing maternal care, but prefer skilled birth attendance from a physician, nurse, or midwife for comprehensive care (ed. who 2017). statistical analysis analyses were completed using r version 4.2.2. we calculated baseline summary statistics (means and standard deviations or numbers and proportions) for all outcomes and covariates for the pooled sample of all 13 countries (central african republic, chad, democratic republic of congo, gambia, ghana, guinea-bissau, lesotho, madagascar, malawi, sao tome et principe, sierra leone, togo, zimbabwe) overall and by disability status. we used logistic regression to understand the relationship between disability status and antenatal care attendance for the region overall. this was adjusted for age, wealth, country, and location (urban and/or rural). multinomial logistic regression was used to examine the relationship between disability status and the type of health worker who provided antenatal care, skilled birth attendance, and post-natal checks. analyses are as a combined estimate for all countries, impairment types, and levels of impairment because of small sample sizes. all analyses were adjusted for age, wealth, country, and location (urban and/or rural). all models accounted for the clustered survey design (i.e., country, cluster, household numbers, and sample weights) and used robust standard errors for the confidence interval calculations. ethical considerations anonymised data were obtained from unicef from their website where all mics data are publicly available (http://www.mics.unicef.org/). ethical clearance and informed consent was the responsibility of the national statistical institutions or unicef-partner institutions who administered the survey. this is an analysis of secondary data and patients, or the public, were not involved in the study design or analysis. as we only had access to publicly available, anonymised data this study was exempt from the university of oxford ethics review. results this study included 10 021 women between the ages of 18 and 49 years, who had reported a live birth in the past 2 years, from 13 countries in sub-saharan africa. baseline characteristics are shown overall and by disability status in table 1. the mean age was 27.8 ± 6.4 years in women without disabilities and 28.7 ± 6.9 years in women with disabilities. fewer women with disabilities lived in urban areas than women without disabilities (28.4% vs. 31.7%). the proportion of women with disabilities in the lowest wealth category was higher than in women without disabilities (37.9% vs. 30.4%). overall, the prevalence of disability was 3.1% (n = 306). the proportion of women receiving at least one anc visit from any provider type was high at 95.4% (n = 9030) and there were small absolute differences between disabled and women without disabilities (91.8% vs. 95.5%). both women with and without disabilities saw nurses the most for their maternal care compared to other health worker cadres (qualified anc: 84.2% vs. 86.9%; skilled birth attendance: 60.4% vs 67.0%; postnatal check: 81.2% vs. 83.7%; and postpartum check: 78.9% vs. 82.1%), although there were small absolute differences. table 1: baseline characteristics, overall and by disability status, of 10 021 women from 13 multiple indicator cluster surveys in sub-saharan africa, 2017–2020. antenatal care antenatal care coverage and provider types are shown in table 2. there was no strong evidence that women with disabilities had different anc attendance compared to women without disabilities (adjusted or = 0.64, 95% c.i. 0.39–1.05) or that women with disabilities saw different types of anc providers compared to women without disabilities (doctors: aor = 1.25, 95% c.i. 0.81–1.91; community health providers: aor = 0.51, 95% c.i. 0.06–4.28). table 2: adjusted odds ratios for antenatal care attendance and providers types for women with disabilities compared to women without disabilities in 13 multiple indicator cluster survey countries in sub-saharan africa, 2017–2020. table 3 shows adjusted odds ratios for which a cadre of health worker (nurses or midwives, doctors, community health providers, and a friend or no one) provided care for each of the three outcomes: skilled birth attendance, postnatal and postpartum care. table 3: adjusted odds ratios for the care provider type for maternal healthcare for women with disabilities compared to women without disabilities from 13 multiple indicator cluster survey countries in sub-saharan africa, 2017–2020. skilled birth attendance there was no strong evidence that women with disabilities had different birth attendants than women without disabilities (table 3: doctors: aor = 1.52, 95% c.i. 0.99–2.33; health workers: aor = 0.70, 95% c.i. 0.41–0.1.18; no one or a friend: aor = 0.72, 95% c.i. 0.42–1.25). however, there was some evidence that women with disabilities more often had their births attended to by doctors. postnatal care there was no evidence of a difference in care provider for women with and without disabilities for the postnatal checks on their babies (table 3: doctors [aor = 0.89, 95% c.i. 0.40–1.99], community health providers [aor = 0.77, 95% c.i. 0.30–2.00], no one or friend/relative [aor = 0.79, 95% c.i. 0.19–3.26]). postpartum care care provider types for postpartum care for women with and without disabilities also showed no differences between the groups (table 3: doctors [aor = 0.95, 95% c.i. 0.34–2.67], community health providers [aor = 1.38, 95% c.i. 0.51–3.75], no one or friend/relative [aor = 0.46, 95% c.i. 0.87–1.38]). discussion this study examined the differences in care seeking patterns and care providers for women with and without disabilities. in the sample of 10 021 women, estimates for antenatal care attendance, qualified antenatal care provider, postnatal, and postpartum checks, showed small absolute and no relative differences between women with and without disabilities, although these estimates were imprecise, with wide confidence intervals. there was some evidence that women with disabilities were attended to by doctors more often than women without disabilities (aor: 1.52, 95% c.i. 0.99–2.33) during birth. underpinning these findings is the general context of inequities in maternal healthcare in sub-saharan africa. for example, several studies have highlighted the rural–urban and wealth divide that results in worse access to maternal health services for rural and poorer women, respectively (alam et al. 2015; samuel, zewotir & north 2021). while we controlled for these factors, our analysis focusing on disability-based inequities still highlights another dimension of inequities within maternal health in sub-saharan africa. our findings in this analysis largely diverge from other literature that highlights these substantial inequities for women with disabilities. for example, evidence from a systematic review (heideveld-gerritsen et al. 2021) and studies in ghana (ganle et al. 2016) and uganda (apolot et al. 2019) suggested that these barriers include communication, support, transportation, accessible health facilities, basic needs during delivery, and stigma or discrimination from health workers throughout the birth process. however, these barriers do not seem to translate into antenatal care differences according to our results compared with other household survey literature. for instance, evidence from pakistan’s demographic and health survey did not show inequities in use of antenatal care between women with and without disabilities (hameed & asim 2020) and uk research that has shown that women with disabilities have comparable access to antenatal care, in line with our study. this previous literature and our findings suggest that there is sufficient access to antenatal care compared to the general population, although these studies have not explored the possible barriers in the affordability and quality of care. no studies have examined the different types of care provider women with disabilities see for their maternal care, making it difficult to compare with existing literature. however, our findings did not show differences in care providers for postnatal and postpartum care. there was some evidence that there was a small difference in skilled birth attendance, but this was not statistically significant. importantly, there was no measure of quality or acceptability of care within these indicators, which is a common issue for women with disabilities in the literature. for instance, national surveys and qualitative studies, showed that women with disabilities in the uk lack the support to make maternal care and childbirth a safe and supportive experience (malouf et al. 2017a, 2017b). more research is needed to understand this important element of maternal care for women with disabilities. therefore, this study highlights the fact that the relationship between women with disabilities and the health system is a complex balance between medical need, rights, and preferences. this complexity requires that maternal health outcomes are evaluated in context. for example, our results suggest women with disabilities may have higher odds of skilled birth attendance from doctors (aor = 1.52, 95% c.i. 0.99 to 2.33) than women without disabilities. having a doctor as a skilled birth attendant may indicate a health centre or hospital birth, which may be appropriate as previous research has suggested higher risks of complications for both the mother and the baby (brown et al. 2022; mitra et al. 2015; tarasoff et al. 2020). this finding may contribute to the fact that women with disabilities have more facility-based births, but this should not necessarily infer better quality care necessarily. a mix of qualitative and quantitative studies has found that women with disabilities feel they are less likely to be adequately supported during birth or by healthcare professionals than women without disabilities (devkota et al. 2017; ganle et al. 2016; malouf et al. 2017a; redshaw et al. 2013). these factors, along with the other social factors such as poverty and poor education make women with disabilities more susceptible to adverse outcomes (atake 2021). as women with disabilities usually have lower levels of health insurance, income, and are more likely to be in poverty, the facility-based birth may be a catastrophic health expenditure, pushing women with disabilities further into poverty (mitra et al. 2017b). moreover, facility-based births might not be in-line with a woman’s desired birth plans and the data do not allow us to explore whether the nature of a woman’s impairment led to the choice for a facility-based birth. qualitative studies around the world have also shown that women with physical impairments report their maternal care is not often aligned with their desires or adaptable and responsive to their wishes (ganle et al. 2016; heideveld-gerritsen et al. 2021; tarasoff 2017). given autonomy and quality of care were not examined in this study, our findings should not necessarily be inferred as better care, but rather examined more fully in further research on maternal outcomes of women with disabilities. while the differences in care providers for other forms of maternal care were inconclusive, the small sample size highlights the need to expand disability disaggregation in other maternal health surveys and across intersectional factors (i.e., race, socio-economic status, religion, etc.). the lack of inclusion of disability status in core sdg indicators, including maternal healthcare, impacts our ability to understand inequities for women with disabilities, although we broadly understand that people with disabilities are not yet ‘expected, accepted, or connected’ within the health system, as per the missing billion health system framework (the missing billion initiative and clinton health access initative 2022). strengths and limitations this study provides new evidence on maternal healthcare for women with disabilities in sub-saharan africa, using data from a large, nationally representative household survey. while other studies have used demographic and health surveys (hameed & asim 2020) or have been conducted in other countries (brown et al. 2022; malouf et al 2017a, mitra et al. 2017a, 2015; tarasoff, 2017), this study provides data on critical sdg indicators across multiple countries in sub-saharan africa. furthermore, specifically examining which types of health workers women with disabilities reported seeking care from provides important data on which care may be most accessible and where further efforts to improve access and quality could be focused to reach women with disabilities. our study was limited by the small proportion of women with disabilities compared to other estimates of disability prevalence (world bank and world health organization 2011), which translated to imprecise estimates and an inability to stratify results by country, impairment type, and level of impairment. while this study did control for country in the analysis, the lack of country disaggregation potentially masks important country-specific trends or system-level factors, such as health insurance coverage, transport subsidies, and outreach programmes that may impact country-level results. however, even at a regional level, there was a small sample size and the proportion of women with disabilities in this study substantially differs from previous estimates (3% in this study vs. 15.4% in the literature), (world bank & world health organization 2011) including other age groups in the mics surveys (rotenberg, s, kuper, h, davey, c, unpublished data). this is likely because the washington group short set has several notable limitations, including a narrower definition of functioning and functional domains than the mics child functioning module and who model disability surveys and the fact that the domains in the short set are less sensitive to including people with psychosocial, intellectual, or developmental impairments. this is an important omission, as these groups face particular barriers in accessing sexual and reproductive healthcare. moreover, as this is self-reported data on disability and there are no published details on accessibility considerations in the survey design (i.e., interpreters, accessible formats, etc.), the sample may be biased by non-response, narrow definitions of disability, and only include individuals with lower thresholds of impairment who can participate in the survey without accommodations. this is an important limitation, particularly in relation to the findings that suggest fewer than expected differences for women with disabilities. additionally, the survey bases questions on sex, rather than gender identity, and therefore may not be fully inclusive of people who have given birth in the past two years, although this is unlikely to impact our results. finally, the data provide no indication on the quality of care women with disabilities received after seeking care, including how their wishes around birth are respected, which is a consistent issue in the literature on health care for people with disabilities. further research is needed to understand these trends in the context of high-quality care and respect for women’s preferences. conclusion in summary, our results show no evidence of differences between women with and without disabilities for antenatal attendance, antenatal care provider, and postnatal and postpartum check-up providers. it provides some evidence that women with disabilities have higher odds of having doctors as skilled birth attendants, but this association was not seen at the p < 0.05 significance level. our study was limited by a smaller than expected proportion of women with disabilities and no data on the quality of care or birth outcomes. thus, there is a need for further studies in sub-saharan africa to examine whether interventions to reduce maternal mortality, improve maternal care, and ensure the maternal-health focused sdg efforts are reaching women with disabilities. improving the accessibility and quality of care for women with disabilities is particularly important as we destigmatise pregnancy and parenthood among people with disabilities and countries increasingly deliver on people with disabilities’ rights to sexual and reproductive health. without better data on the maternal care seeking patterns and experiences, the lack of data masks inequity for people with disabilities. to deliver high-quality health systems, we need to expand research into maternal health outcomes and quality improvement for women with disabilities. acknowledgements the authors thank the participants who participated in mics surveys and the survey teams in each country. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions s.h.r. conceptualised the study, conducted the analysis, and wrote and edited the manuscript. c.d. supported the data cleaning and analysis and edited the manuscript. e.m. helped design the study, supported the analysis, and assisted with the writing and editing of the manuscript. funding information s.h.r. received funding from the rhodes trust and consulting fees from the clinton health access initiative. c.d. received salary support from the programme for evidence to inform disability action (penda) grant from the uk foreign, commonwealth, and development office (uk fcdo). data availability data from unicef-supported mics are publicly available. the analysis code is also available online. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s results, findings, and content. references alam, n., hajizadeh, m., dumont, a. & fournier, p., 2015, ‘inequalities in maternal health care utilization in sub-saharan african countries: a multiyear and multi-country analysis’, plos one 10(4), e0120922. https://doi.org/10.1371/journal.pone.0120922 apolot, r.r., ekirapa, e., waldman, l., morgan, r., aanyu, c., mutebi, a. et al., 2019, ‘maternal and newborn health needs for women with walking disabilities; “the twists and turns”: a case study in kibuku district uganda’, 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university, stellenbosch, south africa citation lyner-cleophas, m., 2019, ‘assistive technology enables inclusion in higher education: the role of higher and further education disability services association’, african journal of disability 8(0), a558. https://doi.org/10.4102/ajod.v8i0.558 original research assistive technology enables inclusion in higher education: the role of higher and further education disability services association marcia lyner-cleophas received: 04 sept. 2018; accepted: 20 june 2019; published: 22 aug. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: using assistive technology is one way to foster inclusion of students in the post-school education and training (pset) sector. objectives: higher and further education disability services association (hedsa) enables the sharing of new knowledge about assistive technologies through its symposia, and making information available on its website. additionally, it facilitates dialogue and collaboration amongst institutions in the pset network using a listserv and newsletters, given that pset institutions are spread countrywide. method: this is an article based on a presentation at the 5th african network of evidence-to-action in disability (afrinead) conference in ghana in 2017 that focused on the value of assistive technology for students pursuing studies in the pset sector and the role played by hedsa in south africa. results: the positive gains and existing gaps in disability inclusion in the higher education sector in south africa are highlighted, with reference to access to technology. all higher education institutions have internet access and can thereby make use of listservs to communicate information. mapability is a way that prospective students can gain a snapshot view of available resources at institutions of learning, using the internet. conclusion: an association such as hedsa plays a critical role in the pset sector to enhance disability inclusion using online tools to disseminate information. keywords: disability inclusion; assistive technology; post-school education and training sector (pset); disability units; hedsa; listserv; mapability. introduction south africa is in the process of healing from sustained exclusion and discrimination, segregation, colonisation, racism and many other social inequalities and injustices that have become ingrained in its society. class, gender, race and disability have borne the brunt of much of the oppression. where students with disabilities were in educational settings, they were further segregated into special schools and mainstream schools (naicker 2005). still further segregation occurred within some of the mainstream schools where there were special classes (howell & lazarus 2003; swart & pettipher 2011). special schools still exist, but broader options are in place, given inclusive education, where more students have access to receiving matric certificates and are furthering their education in the post-school education and training (pset) sector, which is one visible way in which disability inclusion is broadening. international and national treaties and policies point to a human rights-based approach that eliminates discrimination, with specific reference to people with disabilities. these include the constitution of the republic of south africa (republic of south africa 1996); the south african national development plan (ndp) (2030) (republic of south africa 2013); the united nations convention on the rights of persons with disabilities (united nations 2007); the strategic disability policy framework in the pset system (republic of south africa 2018), which is the latest disability policy in the department of higher education and training (dhet); and the promotion of equality and prevention of unfair discrimination act 4 of 2000 (pepuda) (republic of south africa 2000). discrimination has existed for hundreds of years. south africa is now in her 25th year of democracy and striving towards a more inclusive society that acknowledges diversity and its value. the striving towards social justice through many ways continues to be a long struggle. however, the need to be organised and focused as a nation striving to be inclusive in all respects is critical to a socially inclusive society. according to bell (2016), social justice refers to the process of recreating societal principles in a way that echoes equity, recognition and inclusion. given the history of south africa, establishing social justice will be a long process as we review and reflect on our practices and thinking about people and human rights. this policy environment and the quest for social justice pave the way for acknowledging and including diversity in people. increasingly, the use of assistive technology does foster inclusion, with specific reference to disability inclusion, as this article shows. disability inclusion practices in the post-school education and training sector disability inclusion means that we acknowledge disability as part of the diversity in people, thereby enhancing greater interaction and participation in society and educational systems. we remain aware of social injustices, including how we exclude people based on disability, thereby acting in ableist ways. ableism becomes a way of subjugating people merely because they do not present in normative ways. ostiguy, peters and shlasko (2016:299) view ableism as ‘disability oppression’ and as a ‘pervasive system that oppresses people with disabilities while privileging people who do not currently have disabilities’. in the pset sector (education and training beyond basic education, such as colleges and universities) we need to be cognisant of how we might be consciously or unconsciously excluding people from educational opportunities. the latest policy guideline of the dhet for the post-school sector is called the strategic disability policy framework in the pset system (republic of south africa 2018). this strategic disability policy framework acknowledges the need for disability inclusion in post-school education and has put in place this framework to accelerate access and success for people with disabilities. this is the first definitive framework in place for this sector and augurs well for further disability inclusion to take place for students with disabilities leaving high school to further their education. disability, however, is intertwined in matters relating to class, race, gender and economics. affordability and access to support can become exclusionary depending on a combination of these factors. the rise of technology and assistive technologies has impacted how we become socially and economically included. it has also played a life-changing role in access to education for everyone, particularly to people with disabilities. with this access to technology also comes possible exclusion, especially in low-tech environments where access is poor. students in the pset sector have much reading material to work through. more options regarding how to access reading and learning materials, in addition to braille and sign language, are examples. assistive technologies such as the use of screen-reading software to access reading material as well as text enlargement software have enhanced the access to information and learning material. although assistive technologies have been a facilitator of inclusion and participation in living and learning environments, access to technology has mixed spread and application, particularly in africa, as surveyed in a few countries, that is south africa, namibia, malawi and sudan (visagie et al. 2016). amongst others, their findings were that within country access to assistive technologies differs and that governments need to play a greater role where affordability and access to technology are compromised. in the pset sector, given the high volumes of reading material, technology plays a critical role in being an enabler and support to people to ensure higher education levels with the resulting improved successful participation in the economy. the role of disability units as enablers of inclusion disability units or centralised support services in the pset sector have steadily been put in place on most of our campuses in south africa. however, these should not be seen as the only and main stakeholder in education (mutanga 2017). these units, referred to as disability rights units in the strategic disability policy framework (republic of south africa 2018), but also called by various names at our institutions, have been required to facilitate access to a range of students with disabilities on our campuses. although this dhet framework admits that disability units are often seen as being on the fringes in institutions and not integral, they acknowledge their critical facilitative role. some of the expectations of these units have been unrealistic, particularly given the resource constraints, as noted in the foundation of tertiary institutions of the northern metropolis (fotim 2011) report and by howell (2005). such constraints result in either no services, or minimal support or a blurring of services and roles, such as being responsible for professional sign language interpretation services on campus for deaf students. the disability units’ role should mostly be a facilitative and advisory one in instances where the disability unit does not have the expertise and resources. professional sign languages services, for instance, are best left in the language services domain in the pset sector given its specialist nature, but always in collaboration with disability services. disability units could liaise with state services and product suppliers to enable students to obtain the required assistive devices, such as hearing devices or assistive software for computers. disability units can also liaise with bursary providers to award bursaries to their students. liaising with stakeholders on campus from top management and other support to academic departments and their staff is key to successful partnerships between students and support staff, especially where assistive technologies can be provided. disability units therefore play a key role in facilitating support such as assistive technologies and are necessary links to service providers within and outside the pset setting. most disability units are members of higher and further education disability services association (hedsa) and use the hedsa network to improve their knowledge of assistive technologies. assistive technology fosters disability inclusion the value of assistive technologies in education as facilitators of access to information, access to website material and access to learning materials cannot be underestimated, as we strive towards social justice in south africa and disability inclusion in the educational setting in particular. the availability of technology has made access to information increasingly easier (duplaga 2017). this is proving to be an inclusive tool that allows for a variety of users to access information online, amongst other benefits. assistive technology has enabled more forms of making inaccessible information more accessible. examples would be a screen reader such as openbook, magic, job access with speech (jaws)1 or nonvisual desktop access (nvda)2 and zoomtext (the latter enlarges texts). other assistive software could be read & write, reader pens such as the c-pen, dictaphones and wynn, which assist students who have difficulties in reading and writing. these could be purchased by disability units for the use of students but are better placed in the computer labs that students use to access their learning and reading material. it is useful to have such software on students’ personal devices such as laptops as they can then access their information when they are off campus too. personal assistive devices such as hearing aids and walking sticks are aids that would be purchased usually by students for their personal use. in low-tech environments, given the varied access to resources, students can access free open-source software such as nvda. electronic books can be accessed from certain publishers provided multiple copies are not made and given to students who do not have disabilities. cell phones can also be used as recording devices in the absence of pricier assistive technologies. online platforms have bridged many communication gaps. meetings can be held across the globe. in the educational context, information, information communications technologies (icts) and assistive technologies create good opportunities for universal access in instruction and courses (burgstahler 2015). information communications technologies can lower barriers in an educational setting. it is also described as creating an environment that can broaden access and improve collaboration and networking in the educational setting, as indicated in the latest strategic disability policy framework (republic of south africa 2018). this policy seeks to develop an environment in which norms and standards can be set in the pset sector in south africa. although the advent of technology and assistive technologies has made huge positive differences in the lives of people, often people with disabilities are faced with high costs of technologies amidst high unemployment rates (atkinson & castro 2008; visagie et al. 2016), inadvertently excluding them. duplaga (2017) conducted studies, which indicate that email communication is mostly used in the digitised world. searching the internet for information also indicated very high usage. both of these are used by all people, but especially for people with visual or physical disabilities, access to information is easier. the role of higher and further education disability services association in south africa, 26 higher education institutions (heis) and 50 technical and vocational education training sector (tvets) have been established as non-privatised institutions in the pset sector. most of the institutions have some kind of student support office in place, and most of the 26 heis are members of hedsa. fewer tvets are hedsa members at this stage. higher and further education disability services association arose out of a need of fotim, where practitioners in disability support met in a selected region in south africa, to have disability matters organised broadly across all of the provinces in south africa. it is the first and only organisation of its kind in south africa that organises disability support across disability units and likewise stakeholders in the pset sector. higher and further education disability services association has various roles in the pset sector, including how it advises as a community of practice on the assistive technologies across pset institutions. higher and further education disability services association was established in october 2006 and is a community of practice for members of hedsa who work in the pset sector, primarily in disability support services. it is a non-profit organisation (npo) registered with the department of social development. its website address is http://www.hedsa.org.za. its main funder is the carl & emily fuchs foundation. in addition to the main funder, institutions have an annual subscription of r1500 ($102, 13 on 02 august 2019). it holds a biennial general meeting where a new executive is elected for 2 years. the executive coordinates activities and projects nationally and mainly uses technology to do this. members also work as disability unit staff at the various pset institutions countrywide (mainly from heis). higher and further education disability services association has eight core objectives, which are to: stimulate dialogue, promote rights, network & cooperate, facilitate inclusivity, support advocacy, identify needs, undertake projects and encourage collaboration. given that hedsa is not an organisation with a physical address with staff located in a specific place, it operates in the virtual space and is heavily reliant on technology. it operates by email mostly and has presence through a website. the value of hedsa lies in its sharing of information across institutions, to establish best practice for specific institutions given their realities. to share information, the two innovative ways that it has grown are by using a ‘listserv’ as well as mapability (figure 1) – both are means of communicating information via its membership network, as part of its collaboration mandate. figure 1: mapability in south africa. a listserv was actively started in 2018 by using the google platform hedsa-community@googlegroups.com. the members of hedsa can request to be part of the listserv. the listserv enables pset institutions to share practices of inclusion. questions and information shared include guidelines about test and exam concessions, the use of service dogs in the pset sector, institutional versus individual responsibility for the purchase of assistive technologies and the kinds of assistive technologies used in institutions, to name a few of the ideas that are exchanged on a platform that tracks and stores useful information. in addition to the listserve, hedsa established an online platform that allows prospective students to check whether the institutions that they intend to apply for have the kinds of access services and support that they would need, should they be accepted to study at the specific institution. this online mapping platform is called mapability. mapability aims to provide students with online information about accessibility in the pset sector on a map of africa. this guides them regarding accessibility in the location that they wish to attend or visit. the international exchange erasmus student network started such an online mapping site to assist students with disabilities with accessibility information3. mapability in south africa is the first of its kind on the continent and promises to guide students and staff regarding accessibility in the pset sector. the website of hedsa also directs people such as students and staff to service providers of assistive technology4. at the biennial symposium held by hedsa, there is an opportunity for assistive technology providers to exhibit their technologies to the attendees. many contacts are built on this pset platform, and good collaborations are formed. conclusion social justice cannot be achieved without the inclusion of all people, including people with disabilities, in educational settings. the human rights-based approach is entrenched in various national and international policies and treaties. policies, guidelines, intention and rhetoric must be enacted and put into practice. economic constraints are a reality, but free open-source software such as nvda can be used as screen-reading software for people with difficulties in reading and writing in low-resource environments. at the pset institutions in south africa, it is important to network across institutions to improve institutional knowledge and support to staff and students, with reference to ways in which barriers to learning can be overcome. higher and further education disability services association creates an online opportunity for enhanced information sharing and collaboration through its listserv, symposia, the online mapability tool and the captive audience it has with the community of disability unit staff. the staff are diverse with a range of expertise and skills that can be shared across disability units to enrich practice. institutions in south africa that are part of the pset sector would find it useful to add the ways in which they are inclusive at their institutions, to an online tool such as mapability. this presents a quick guide to services at tvet colleges or heis. the hedsa website can be contacted regarding mapping their services on mapability. the listserv, given that emails are very common today, is a useful tool to use and link with tvet colleges and heis, where quick questions need to be asked and multiple inputs are gathered as good practices for the various tvet colleges and heis. technical and vocational education training sectors are encouraged to join hedsa, as well as heis that have not yet done so. it offers a community of practice through which to share information and innovative ideas and attend affordable biennial symposia. as an organisation it makes input into government policies as needed and requested. acknowledgements i acknowledge afrinead for the opportunity to present the higher and further education disability services association (hedsa). afrinead, part of the faculty of medicine and health sciences, co-arranged the conference with kwame nkrumah university of science and technology (knust) in kumasi, ghana, in 2017. higher and further education disability services association is acknowledged for the deep contribution it has made to disability inclusion in the pset sector, particularly in institutions of higher education in south africa. attending this conference would not have been possible without the recognition and financial award by the centre for collaboration in africa (cca) at stellenbosch university. they bring together partners on the african continent to foster collaboration and share good practices. competing interests the author has declared that no competing interests exist. authors’ contributions full contribution was made by the author, dr marcia lyner-cleophas. this article was written as an outflow of the afrinead conference held in ghana in 2017. it developed into an article that serves to shed light on the work of hedsa in the pset sector in south africa, also called higher and further education. ethical considerations this article is not based on any research conducted – no ethical clearances were sought and no ethical dilemmas encountered. i was on the executive of hedsa for 2016–2018 and they were informed of my presentation of hedsa at the afrinead conference in ghana. no funding was obtained from them to do this presentation. this article followed all ethical standards for research without direct contact with human or animal subjects. funding no financial sources were sought to write this article. however, to attend the 5th afrinead conference in ghana 07–09 august 2017, financial assistance was provided by the centre for collaboration in africa at stellenbosch university. kwame nkrumah university of science and technology (knust) and stellenbosch university are bilateral partners. the cca covered travel, conference, accommodation and visa costs. additionally, the open access publication funding of stellenbosch university library and information services assisted with aosis publication fees. i am very grateful for this assistance. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the article expresses the views of the work of hedsa and contextualises the higher education disability inclusion sector in south africa. references atkinson, r.d. & castro, d.d., 2008, digital quality of life: understanding the personal and social benefits of the information technology revolution, viewed 30 july 2018, from https://www.innovationpolicy.org bell, l.a., 2016, ‘theoretical foundations for social justice education’, in m. adams, l. bell, d. goodman & k. joshi (eds.), teaching for diversity and social justice, pp. 3–26, routledge, ny. burgstahler, s.e., 2015, universal design in higher education: from principles to practice, harvard education press, cambridge, ma. duplaga, m., 2017, ‘digital divide among people with disabilities: analysis of data from a nationwide study for determinants of internet use and activities performed online’, plos one 12(6), e0179825, viewed 25 july 2018, from https://doi.org/10.1371/journal.pone.0179825 foundation of tertiary institutions of the northern metropolis (fotim), 2011, disability in higher education report, viewed 30 august 2018, from https://www.uct.ac.za/usr/disability/reports/annual_report_10_11.pdf higher and further education disabilities services association (hedsa), n.d., mapping the accessibility of south african tertiary education institutions, viewed n.d., from https://www.hedsa.org.za/mapability higher and further education disabilities services association (hedsa), 2006, viewed 25 july 2018, from http://www.hedsa.org.za howell, c., 2005, south african higher education responses to students with disabilities. equity of access and opportunity?, higher education monitor no. 23, human sciences research council press, cape town. howell, c. & lazarus, s., 2003, ‘access and participation for students with disabilities in south african higher education: challenging accepted truths and recognising new possibilities’, perspective in education 21(3), 59–74. mutanga, o., 2017, ‘students with disabilities’ experience in south african higher education: a synthesis of literature’, south african journal of higher education 31(1), 135–154. https://doi.org/10.20853/31-1-1596 naicker, s.m., 2005, ‘inclusive education in south africa: an emerging pedagogy of possibility’, in d. mitchell (ed.), contextualizing inclusive education, pp. 230–252, routledge, abingdon. ostiguy, b.j., peters, m.l. & shlasklo, d., 2016, ‘ableism’, in m. adams, l. bell, d. goodman & k. joshi (eds.), teaching for diversity and social justice, pp. 299–337, routledge, ny. republic of south africa, 1996, constitution of the republic of south africa, government printer, pretoria. republic of south africa, 2000, promotion of equality and prevention of unfair discrimination act 4 of 2000 (pepuda), viewed 30 august 2018, from http://www.justice.gov.za/legislation/acts/2000-004.pdf republic of south africa, 2013, south african national development plan (ndp) (2030), viewed 31 august 2018, from http://www.gov.za/issues/national-development-plan-2030 republic of south africa, 2018, department of higher education and training (dhet). strategic disability policy framework in the post-school education and training system, viewed 30 july 2018, from http://www.dhet.gov.za/siteassets/gazettes/approved%20strategic%20disability%20policy%20framework%20layout220518.pdf. swart, e. & pettipher, r., 2011, ‘perspectives on inclusive education’, in e. landsberg, d. kruger & e. swart (eds.), addressing barriers to learning in south africa, pp. 1–27, van schaik, pretoria, south africa. united nations, 2007, united nations convention on the rights of persons with disabilities, viewed 30 august 2018, from http://www.un.org/new/en/education/…/education-for-all/…/jomtien-1990/ visagie, s., eide, a.h., mannan, h., schneider, m., swartz, l., mji, g. et al., 2016, a description of assistive technology sources, services and outcomes of use in a number of african settings, viewed 01 august 2018, from http://doi.org/10.1080/17483107.2016.1244293 footnotes 1. jaws. https://www.freedomscientific.com/products/blindness/jaws. 2. https://www.nvaccess.org/. 3. https://esn.org/students; https://www.politico.eu/article/the-mapability-project-taking-the-initiative-on-mobility/. 4. https://www.hedsa.org.za/technology. abstract background methods heart rate variability measurement data analysis results occupational performance discussion summary conclusion limitations of the study acknowledgements references about the author(s) zingisa nqwena college of health sciences, university of kwazulu-natal, durban, south africa rowena naidoo college of health sciences, university of kwazulu-natal, durban, south africanaidoor3@ukzn.ac.za citation nqwena, z. & naidoo, r., 2016, ‘the effect of therapeutic horseback riding on heart rate variability of children with disabilities’, african journal of disability 5(1), a248. http://dx.doi.org/10.4102/ajod.v5i1.248 original research the effect of therapeutic horseback riding on heart rate variability of children with disabilities zingisa nqwena, rowena naidoo received: 01 dec. 2015; accepted: 21 june 2016; published: 18 aug. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: heart rate variability (hrv) is the oscillation in the interval between consecutive heart beats, resulting from dynamic interplay between multiple physiologic mechanisms that regulate instantaneous heart rate. short-term heart rate regulation is governed by sympathetic and parasympathetic neural activity and therefore hrv examination can be used as a non-invasive estimate of the functioning of the autonomic nervous system (ans). aim: to determine the effects of therapeutic horseback riding (thr) intervention on the hrv of children with disabilities. the objective was to examine if thr intervention improves the hrv of children, hence improving the parasympathetic activity that is associated with a calm and relaxed state. methods: this is a quasi-experimental design. heart rate variability components were measured over six intervention sessions of thr. heart rate variability measures were recorded from 29 participants with various disabilities, and was assessed in both time and frequency domains. results: over the six thr sessions, the time domain showed an increase in hrv for pre-thr indicating improved vagal activation, whereas frequency domain showed both increased sympathetic activity and increased parasympathetic activation during thr based on different components of frequency domain. conclusion: therapeutic horseback riding intervention of six sessions demonstrated a change in hrv of children with disabilities. however, the changes obtained were not significant to make conclusive measures as to whether sympathetic or parasympathetic activity is predominantly increased after the six sessions. further research involving more than six sessions of thr is required to yield more significant changes. background therapeutic horseback riding (thr) is a method of treatment involving riding a horse and performing certain activities on a horse to accomplish physical, emotional, social, cognitive, behavioural and educational goals (lessick et al. 2004). thr is similar to hippotherapy. however, thr is performed by a trained instructor teaching the rider to improve basic riding skills whilst hippotherapy is performed by a physical therapist or occupational therapist using equine movements to improve posture, balance and fine motor skills (snider et al. 2007). thr is one of the methods used as a treatment and management tool for children with disabilities, including cerebral palsy, learning disabilities, amputations, autism, spinal cord injuries, neurological disorders and emotional problems (lessick et al. 2004). the movement of the horse’s pelvis moves the rider with the same three dimensional movements which occurs during human walking, providing motor and sensory inputs similar to those received during walking, hence providing neuromuscular stimulation (bowes & cook 2007). the benefits of thr include stimulation of respiration and circulation, improved range of motion, and relaxation of tight muscle for conditions such as muscular dystrophy, poliomyelitis, amputation and multiple sclerosis (riding for the disabled association 1987). studies have also shown improvements in balance (homnick et al. 2015; kang 2015; miller & alstan 2004), motor and sensory efficiency (wuang et al. 2010) and social motivation (bass, duchowny & llabre 2009). numerous benefits of thr have been proven through various methods (homnick et al. 2015; kang 2015; miller & alstan 2004); however, the use of heart rate variability (hrv) as a method to measure stress or relaxation status is limited. hrv can be used to assess if an individual is stressed or is in a more relaxed state (michels et al. 2013). hrv is the oscillation in the interval between consecutive heart beats (schroeder et al. 2004). heart rate (hr) varies from beat to beat during normal sinus rhythm (bilchick & berger 2006). hrv can simply be defined as a time gap between the heart beats, which normally varies throughout the respiratory cycle. it is measured by calculating the time between the r peaks on an electrocardiogram (ecg) trace (taskforce 1996). low hrv is defined as a low variability in the distance between consecutive heart beats, whilst hrv is a high variability in the distance between consecutive r peaks of the heart beat signal (michels et al. 2013). in healthy individuals, hrv is normally higher, whilst lower hrv is associated with increased risks of cardiovascular diseases (colhoun et al. 2001). hrv results from the dynamic interplay between multiple physiologic mechanisms that regulate instantaneous hr (bilchick & berger 2006). short-term hr regulation is governed by sympathetic (fight or flight) and parasympathetic (relaxation state) neural activity (bilchick & berger 2006) and, therefore, hrv examination can be used as a non-invasive estimate of the functioning of the autonomic nervous system (ans). low parasympathetic activity is linked to poor emotion regulation (porges, doussard-roosevelt & maiti 1994) and high stress levels (porges 1995). furthermore, hrv can also be used to determine regulation of the peripheral viscera and the heart by the ans (xie et al. 2005). hrv has time and frequency domain components. time domain includes the mean inter-beat interval (r-r interval), which is the distance between successive heartbeats, expressing mainly the parasympathetic activity. the mean squared successive differences (mssd) between r-r intervals is the estimate of the short-term component of hrv and provides vagal index. an increase in this value also reflects an increase in parasympathetic activity (taskforce 1996). this value can also be calculated as a root mean squared successive difference (rmssd) between r-r intervals. total power (tp) is the variance of all the r-r intervals, with frequency ranges approximately ≤ 0.4 hz, measured in ms2 (taskforce 1996). component coefficient of variation (ccv) also represents the variation of hrv (expressed in %). ccv high frequency (hf) and ccv low frequency (lf) reflect the parasympathetic and sympathetic activity, respectively (kurosawa et al. 2007). frequency domain measures pertain to hrv at certain frequency ranges associated with specific physiological processes. parameters evaluated are tp at hf and lf. the tp at hf peak (0.15–0.4 hz) corresponds to respiratory sinus arrhythmia and reflects the parasympathetic activity (moodithaya & avadhany 2009) and the tp at lf peak (0.04–0.15 hz) predominantly reflects sympathetic activity as it is influenced by blood pressure baroreceptor mediated regulation (moodithaya & avadhany 2009). the lf/hf ratio is also used to assess the balance between sympathetic and parasympathetic activity. an increase in the ratio indicates an increase in sympathetic activity and a decrease indicates a predominant increase in parasympathetic activity. the variables of interest in this study were power at hf, power at lf, lf/hf ratio, r-r, mssd between r-r intervals, and tp. ccv for hf and lf was also assessed. limited studies have assessed hrv in children with disabilities. time and frequency analysis confirmed the predominance of sympathetic activity in children with disabilities compared to healthy children during sleep (bouquier, amand & van eecke 2013). increased sympathetic activity in children with disabilities was associated with a reduction in adaptive abilities of the children’s ans (bouquier et al. 2013). to date, a single study in the literature assessed the effects of thr on hrv of children with disabilities (naidoo et al. 2014). the study examined the acute hrv responses to a thr session in children with autism spectrum disorders (asds). the findings were increased rmssd post-thr and reduced lf/hf ratio, which were both suggestive, although not conclusive, of an increase in parasympathetic activity after thr, associated with a calm and relaxed state. the aim of this article was to determine the effects of thr over a period of six sessions on the hrv in children with various disabilities. the objectives of the study were to examine the effects of thr on the activity of the parasympathetic nervous system over a period of time on children with disabilities, via hrv testing preand post-intervention, as well as to determine the effects of thr on the occupational performance of children with disabilities preand post-intervention. methods study design the study used a nonrandomised pre-and post-tests quasi-experimental design to assess the effect of the thr intervention of six sessions on the hrv of children with disabilities. the dependent variable was the hrv measure, whilst the independent variables were the children with disabilities. participants a convenient sample of 29 children with disabilities (18 boys and 11 girls), with a mean age of 8.69 (±2.22) attending thr sessions, was selected. all participants attended thr sessions at the ridge top equine centre, kwazulu-natal, but were recruited from different schools. the sample was selected because of the easy accessibility to the children in the thr programme by the researchers, as children were all attending at the same riding centre from which permission to conduct the study was granted for. participants adhered to the following inclusion criteria: children between 5 and 18 years, presenting with a disability as diagnosed by the physician, attending group thr sessions with more than three months experience. out of the 29 participants, 12 presented with asd (41%), 10 with cerebral palsy (34%), 3 with pervasive developmental disorder (10%), 1 with developmental learning disability (3%), 1 with sensory problems (3%), 1 with fanconi syndrome (3%), 1 with blindness (3%) and 1 with down’s syndrome (3%). participants were diagnosed by their physicians of the disabilities they presented, however, the severity of the disability was unspecified. all children were verbal and were able to respond (table 1). table 1: sample demographics of participants (n = 29). testing procedures and protocol consent forms were signed by parents, participants and the owner of the riding school for permission to conduct the study. parental consent and child assent was obtained on an individual basis. the study was approved (bf074/14) by the biomedical research ethics committee of the university of kwazulu-natal, south africa. participants were familiarised with the placement of the electrodes and actiheart monitor on their chest during thr sessions two weeks prior to the start of the measurements. teachers were also shown how to place the electrodes on the participants and were requested to familiarise the children during school hours. testing was conducted at the riding centre after the familiarisation sessions and once consent was granted by parents. testing was performed between 08:30 and 11:00 as that was the scheduled time for riding lessons. measurements were taken once a week for a period of six weeks using the actiheart monitor to record data, attaching two electrodes on the chest and the actiheart. the researcher clarified and answered questions related to the testing procedures. heart rate variability measurement actiheart (cambridge neurotechnology, cambridge, uk) monitors were used to measure the inter-beat intervals (ibis) on participants using the short-term hrv monitoring set-up on the actiheart software. two ecg electrodes (unilect 4040m) were placed on the chest on v2 (4th rib space on the left of the sternum) and v5 (on the 6th rib in line with the anterior axillary line) of the participant. measurements were recorded once a week for six weeks and involved three stages in each session. during the first stage, pre-thr measurements were recorded five minutes before riding, for five minutes with participants seated on chairs. the second stage of measurements were recorded during the thr session for 20 to 25 minutes. lastly, during stage three, post-thr measurements were recorded five minutes after riding, for five minutes with participants seated on chairs. therapeutic horseback riding sessions participants were involved in group thr sessions in an outdoor arena conducted by a certified thr instructor. there were two riding groups on each day, and each group consisted of four to six riders per session. each group was riding once a week, with different groups attending thr each day (monday to friday). each day of the week had one specific thr instructor allocated to conduct the thr session for that day, together with the same side walkers and leaders for each participant. a total of three different thr instructors were available for the week. all three thr instructors followed a similar thr programme each week. each participant had one volunteer leading the horse and two volunteers as side walkers to assist in thr activities and to ensure proper posture maintenance. the thr instructor stood in the centre of the arena and instructed the horse leaders, riders and side walker of the activities to perform during thr. the sessions included riding, mounting and dismounting, trotting as well as performing activities such as throwing a ball, extending arms and reaching to touch the horse’s ears or tail during riding. occupational performance questionnaire the occupational performance questionnaire (opq) was utilised to collect preand post-thr programme data. the questionnaire was adapted from the, ‘development of a questionnaire to determine change in the occupational performance of pre-schoolchildren with asds receiving occupational therapy – sensory integration’ (wallace 2009). the opq included information on sleeping patterns, toilet training, impact of the disability on social functions, impact on family members, social interaction, play-time and schooling. the questionnaire was administered to parents/guardians at the first session of thr and post-six weeks of thr. the objective of the questionnaire was to assess if the thr improved the quality of life of the children with disabilities. data analysis heart rate variability the recorded data for pre-thr, during thr and post-thr session were transferred to the actiheart software after each session and all data exported to the hrv analysis software at the end of the six sessions for all participants. r-r intervals (time between qrs complexes), which are the ibis, were exported as a text file for time domain and spectral hrv analysis using the varcor pf7 diagnostic device software (dimea group, olomouc, czech republic). the r-r intervals were examined, and all premature ventricular contractions, missing beats, and any artefacts were manually filtered. a set of 300 artefact-free subsequent r-r intervals was obtained. a spectral analysis of hrv was used to assess the ans activity and was performed using the fast fourier transformation. the spectral analysis incorporated a sliding 256 points hanning window and a coarse-graining spectral analysis algorithm (yamamoto & hughson 1991). the power spectra was quantified by integrating the area under the power spectral density curve. two frequency bands were used: low frequency (lf) from 0.05 to 0.15 hz and hf from 0.15 to 0.50 hz. the normalised low and hf power (lfnu and hfnu, respectively) were calculated as follows: 100% × lf/(lf+hf) and 100% × hf/(lf+hf), respectively. normalisation minimises the effect on the values of lf and hf components of the changes in tp (taskforce 1996). tp is the variance of all the r-r intervals, with frequency ranges at approximately ≤ 0.4 hz, measured in ms2 (taskforce 1996). repeated measures analysis of variance (anova) was used and applied to each variable for pre-, during and post-thr separately. occupational performance questionnaire the data were analysed using the statistical package for the social sciences (version 21) with significance set at p ≤ 0.05. statistics and tests used were descriptive statistics including means and standard deviations, where applicable, with frequencies represented in tables or graphs. binomial test was used to test whether the proportion falling in each of the two categories is equal. mcnemar test was used to assess for significance of changes; and used to test whether there are differences preto post-intervention, with binary measured variables. when the data are categorical (more than two categories), then the marginal homogeneity test was used. chi-square (goodness-of-fit-test) was used on a categorical variable to test whether any of the response options are selected significantly more/less often that the others. results heart rate variability both time and frequency domain components of hrv were assessed. the average r-r for prethr scores were significantly lower at session one than at session two, (p = 0.022), session three (p = 0.044) and session six (p = 0.011). the mean values for the r-r pre-thr were 0.57 (±0.06), 0.61 (±0.69), 0.60 (±0.56) and 0.61 (±0.69) for sessions one, two, three and six, respectively. there were no significant differences for during and post-thr over the six sessions (figure 1). figure 1: r-r interval before, during and after therapeutic horseback riding (thr) over six sessions. tp during thr for session three is significantly higher than sessions one (p = 0.044) and two (p = 0.024), and session six significantly higher than session four (p = 0.045). the mean values for tp during riding were 810.55 (±743.49), 923.19 (±772.13), 1381.88 (±1032.73), 824.01 (±625.26) and 1258.31 (±1024.02) for sessions one, two, three, four and six, respectively. there were no significant differences for preand post-thr over the six sessions (figure 2). figure 2: total power before, during and after therapeutic horseback riding (thr) over six sessions. ccv for lf during thr is significantly higher in session three than session four (p = 0.0006), and session six is significantly higher than sessions one (p = 0.022), and four (p = 0.011). the mean values for ccv for lf during thr were 2.80 (±1.29), 3.43 (±1.38), 2.90 (±1.12) and 3.59 (±1.44) for sessions one, three, four and six, respectively (figure 3). figure 3: ccv for lf before, during and after therapeutic horseback riding (thr) over six sessions. there were no significant differences in ccv from session one to session six for pre-, during and post-thr (figure 4). figure 4: ccv for hf before, during and after therapeutic horseback riding (thr) over six sessions. figure 5 showed no significant differences in lf/hf from session one to session six for pre-, during and post-thr. figure 5: lf/hf before, during and after therapeutic horseback riding (thr) over six sessions. occupational performance the questionnaire evaluated the biological rhythms including toilet training and sleeping pattern, family adjustments, social and play skills, before and after involvement on the thr programme. social functions and family gatherings a significant proportion of parents reported that they were able to take their child to birthday parties (p = 0.008), restaurants (p = 0.031), and sustain relationships with other families (p = 0.008) before thr. after thr, a significant proportion of parents reported they were able to take their child to birthday parties (p = 0.001), restaurants (p < 0.005), and sustain relationships with other families (p < 0.005). there were no significant reports regarding taking the child to family gatherings before thr, with a significant proportion reporting they are taking the child to the family gatherings after thr (p = 0.001). social interaction and play skills a significant proportion indicated that the child was not over-dependent on his/her parents or clingy after thr (p = 0.002). a significant proportion indicated that the child was not able to make friends before thr (p = 0.031), but able to make friends after thr (p < 0.005). the child was not able to participate in structured group play before thr (p = 0.002), but was able to after thr (p < 0.005). a significant proportion also indicated that the child was able to play in unfamiliar settings after thr (p = 0.002), which was not significant before thr. discussion the objective of this article was to examine the effects of thr on the activity of the parasympathetic nervous system over a period of time on children with disabilities, via hrv testing preand post-intervention. it also sought to determine the effects of thr on the occupational performance of children with disabilities preand post-intervention. the primary findings of this study were a significant change in r-r interval pre-thr, ccv lf during thr, and tp during thr, which are discussed in detail in the following section. heart rate variability with regard to the time domains, the r-r interval reflects the overall hrv, and was lower at session one, particularly for pre-thr, which showed significant increases in the r-r interval scores in sessions two (p = 0.022), three (p = 0.044) and six (p = 0.011) respectively (figure 1). this may be suggestive of improvements in overall hrv over the six sessions pre-thr. post-thr, the r-r interval was significantly lower than pre(p < 0.0005) and during (p < 0.0005) the thr r-r interval. the decreased r-r interval score post-thr can be associated with increased mental stress (orsila et al. 2008). this could have been as a result of restlessness in children during the measurement because of the nature of the disabilities. children might have been restless as a result of the excitement and impatience to feed the horses and go back to school, as that is their normal routine. therefore, as per protocol, to sit down for five minutes could increase the mental stress. there was no change in mssd, indicating no improvement in parasympathetic activity after the six sessions. with regard to the frequency domains, there were no significant changes in lf from sessions one to six for pre-, during and post-thr, and no significant differences between pre-, during and post-thr lf scores. this indicates no increase or decrease in sympathetic activity over the six sessions. hf also showed no significant changes over the six sessions and no differences between pre-, during and post-thr scores, indicating no improvement in parasympathetic activity over the six sessions of thr. lf/hf ratio revealed no significant changes over the six sessions of thr (figure 5). although not significant, observing the trend of lf/hf over the six sessions of thr, there was a slight reduction in lf/hf over the sessions, predominantly post-thr. increasing the number of thr sessions could possibly demonstrate a significant reduction in the ratio over the number of sessions, indicating an improvement in parasympathetic activity associated with the relaxation state. ccv for hf showed no significant change over the six sessions (figure 4), with the trend slightly increasing with each session. an increase in ccv hf indicates an increase in parasympathetic activity and increase in ccv lf indicates an increase in sympathetic activity (kurosawa et al. 2007). component coefficient of variance for lf showed a significant increase from session three to session four (p = 0.0006), and session six was also significantly higher than session one (p = 0.022) and four (p = 0.011), during thr (figure 3). this increased sympathetic activity can be related to the exercises performed during thr. there was no significant change in ccv lf for preand post-thr over the six sessions. there were no significant changes in tp over the six thr sessions for preand post-thr. significance was observed in tp during thr (figure 2), where session three was significantly greater than sessions one (p = 0.044) and two (p = 0.024), and session six greater than session four (p = 0.045). increased tp at these points can be associated with increased vagal (parasympathetic) activation, as per study by taskforce (1996). a marked reduction of tp is associated with sympathetic activation, an increase in tp is associated with vagal activation (taskforce 1996). studies have shown a positive effect of thr on children with disabilities, including improved stereotypic behaviour, hyperactivity (gabriels et al. 2012), motor skills (gabriels et al. 2012; ionatamishvili et al. 2004), improved attention and social motivation (bass et al. 2009). the findings of this article show that there is a change in hrv after a period of six thr sessions for children with disabilities. an increase was noted in r-r interval pre-thr and tp during thr, both suggestive of increased parasympathetic activity, whilst an increase in ccv lf suggested an increased sympathetic activity. because of the inconsistency between time and frequency domains, no conclusive findings can be reported. most studies conducted on thr involved interventions of 10 to 12 weeks to foster significant changes. however, the effect of thr on down’s syndrome, spina bifida and autism for a seven week thr intervention had shown significant improvements in gross motor function (winchester et al. 2002). the current study was conducted for a period of six sessions with thr performed only once a week by participants. the duration of the sessions might have not been adequate to bring about significant findings on hrv. occupational performance the opq adapted from wallace (2009) measured different variables to assess if thr intervention has a positive effect on occupational performance of children with disabilities, thus improving quality of life. there were no problems with biological rhythms including sleeping, toilet training and feeding problems before the thr intervention. there was a significance in family adjustment, with reports indicating that parents were able to take the child to family gatherings after thr (p = 0.001). however, parents were still able to take their child to birthday parties and restaurants even before thr intervention. the ability for parents to take the child to family gatherings can be attributed to improved independency. social interaction reports indicated that the child was not over-dependent or clingy on parents after thr (p = 0.002). this could be linked with the interactions the children have during thr sessions, sense of achievement gained through riding and therefore increasing the level of confidence. these findings are in agreement with the study by bass et al. (2009) which showed improvements in social motivation, less distractibility, less inattention after a 12-week thr intervention in children with asd. however, another study assessed quality of life of children with cerebral palsy before and after a 10-week thr intervention. the study examined variables such physical well-being, psychological well-being, mood and emotions, parents relations to home life, schooling, and the thr intervention showed no significant improvement in gross motor function, health and quality of life of children with cerebral palsy (davis et al. 2009). there was an improvement in play skills of children, with the ability to make friends after thr compared to before thr (p ≤ 0.005), ability to participate in structured group play (p ≤ 0.005) and to play in unfamiliar settings after thr (p = 0.002). this could be attributed to activities performed during thr, interaction with other children, riding instructors and with the horses. there was no change in the schooling measures after thr intervention, which is in agreement with the study by davis et al. (2009). improvement is evident in selected aspects of occupational performance for children, including social interaction, play skills and family adjustments. however, it should be acknowledged that thr was not the only intervention during the period of data collection, as the questionnaire revealed that 72% of the sample were also undergoing speech therapy, 55.6% physiotherapy, 33.3% occupational therapy and 5.6% applied behavioural analysis. it cannot be concluded that thr alone brought the change in occupational performance, but the improvements could be attributed to a combination of all these methods of treatment including thr. summary thr of six sessions shows changes in hrv in children with disabilities. however, inconsistency in the results leads to inconclusive findings as to whether sympathetic activity or parasympathetic activity is predominant. for instance, time domain showed an increase in hrv for pre-thr measured by the r-r interval indicating improved vagal activation, whereas frequency domain showed increased sympathetic activity based on ccv lf during thr, and increased parasympathetic activation when assessing tp during thr. however, the quality of life of children was improved in selected aspects. conclusion studies have shown a positive effect of thr interventions in children with disabilities including asds, cerebral palsy, down’s syndrome, spina bifida and developmental delay. there is lack of literature pertaining to thr and its effects on the hrv of children with disabilities. this article assessed such effects. the findings showed that a thr intervention of six sessions elicited a change in hrv of children with disabilities. however, the changes obtained were not adequate to make conclusive measures as to whether sympathetic or parasympathetic activity is predominantly increased after the six sessions. positively, the thr intervention has been shown to contribute to the improved social interaction, independency, family adjustments and play skills of children with disabilities, hence improving quality of life. as a result of the lack of literature on the effects of thr on the hrv of children with disabilities, this article provides a basis for further research to be conducted to obtain more information on thr as a tool to improve the parasympathetic activity of children with disabilities. limitations of the study the sample size for this study was relatively small, therefore results cannot be generalised to a larger population group. scrupulous science requires that the sample size to be determined according to elicit specific statistical calculations to elecit significant differences. however, because of the limited number of children that were available to attend the thr sessions, the sample size was not calculated but selected based on availability. further research involving a larger sample is required. there was also no control group in the study; however the experimental group was acting as their own control comparing preand post-thr effects. hrv in children with disabilities should include an experimental group and children with no disabilities as a control group with both groups involved in thr. finally, hrv in children with disabilities receiving thr (experimental) and those who are not receiving thr (control) would provide more information on hrv changes because of thr. participants were also involved in other therapeutic interventions, therefore, changes noted in occupational performance after the thr intervention cannot be solely attributed to thr. the changes could be as a result of a combination of all the interventions the participants were involved in, including thr. a study implementing only a thr intervention, without any other form of treatment or therapy would produce more reliable results, although obtaining a statistically significant sample size to participant in a thr programme exclusively, may pose a challenge. however, the hrv changes obtained, which was the primary focus in this study, could be predominantly associated with the thr intervention as the measurements were recorded during the thr sessions. acknowledgements the authors would like to thank the children and families for participating in the study, mrs tracey cumming for assisting with the thr sessions and prof. andrew mckune for assisting with the data analysis. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions z.z.n. was the principal researcher and was responsible for the data collection, conceptualised and drafted the article. r.n. was the project supervisor and provided conceptual input into the research methodology and critical input throughout the writing process. references bass, m., duchowny, c. & llabre, m., 2009, ‘the effect of therapeutic horseback riding on social functioning in children with autism’, journal of autism development 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& hughson, r., 1991, ‘coarse-graining spectral analysis: new method for studying heart rate variability’, journal of applied physiology 7, 1143–1150. article information authors: pragashnie naidoo1 helga elke koch1 jassmine anderson1 prashika ghela1 perusha govender1 nausheena hoosen1 halima khan1 affiliations: 1occupational therapy department, university of kwazulu-natal, south africa correspondence to: pragashnie naidoo postal address: private bag x54001, durban 4000, south africa dates: received: 04 mar. 2014 accepted: 14 sept. 2014 published: 21 nov. 2014 how to cite this article: naidoo, p., koch, h.e., anderson, j., ghela, p., govender, p., hoosen, n. et al., 2014, ‘accessibility for persons with mobility impairments within an informal trading site: a case study on the markets of warwick, south africa’, african journal of disability 3(1), art. #120, 9 pages. http://dx.doi.org/10.4102/ ajod.v3i1.120 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. accessibility for persons with mobility impairments within an informal trading site: a case study on the markets of warwick, south africa in this original research... open access • abstract • introduction • research method and design    • design    • study setting    • procedure    • analysis       • ethical considerations • trustworthiness and rigour • findings    • theme 1: access to the markets (‘this is not the right place to try and struggle to find your way around’)    • theme 2: access to interior goods and services (‘i don’t know, maybe they didn’t apply their mind there’)    • theme 3: ablution facilities (‘if i’m gonna pee now where am i gonna pee?’)    • theme 4: health and safety    • theme 5: transport services • discussion • conclusion • acknowledgements    • competing interests    • authors’ contributions • references • footnotes abstract top ↑ background: there are a number of informal trading sites across cities in sub-saharan africa, of which the markets of warwick is one example. since the informal economy is an important contributor to a city’s economy as well as a source of employment, it is important for these sites to be accessible for all persons. whilst the south african government has put structures in place to identify and remove environmental barriers in order to meet the individual needs of persons with mobility impairments and improve their quality of life, persons with mobility impairments still face barriers and restricting environments that prevent them from participating in society and its social and economic activities. objectives: this case study aimed at exploring accessibility within the markets of warwick for persons with mobility impairments by an ergonomic assessment, augmented by voices of participants within the market. method: a qualitative, instrumental, single case study design was utilised with purposive sampling of the markets of warwick as the study setting. multiple sources of data were gathered, such as semi-structured interviews, direct observations of an environmental survey supported by photographs, and the authors’ review of relevant documents. transcriptions were analysed using nvivo 10 software programme with inductive coding. results: whilst policies have been in place since 1996 to adjust infrastructure, the markets of warwick still remain inaccessible to persons with mobility impairments and do not meet the standardised infrastructural design. conclusion: the findings of this study may offer a significant understanding of the complexity of accessibility within an informal trading site and create an awareness of the limitations this has for persons with mobility impairments. additionally, these findings may assist in effecting a positive change in terms of the infrastructure of the markets and in continuous advocating for the rights of persons with all disabilities. introduction top ↑ twenty years into south africa’s democracy, there has been a significant improvement in recognising the rights of persons with disabilities. policies and legislation include the constitution, the integrated national disability strategy (inds) of 1997, promotion of equality and prevention of unfair discrimination act (pepuda, or the equality act no. 4 of 2000) and the employment equity act (eea), no. 55 of 1998. south africa was also one of the countries to sign the treaty that emerged from the united nations (un) convention on the rights of persons with disabilities, thereby agreeing to ensure that individuals who have mobility impairments have access on an equal basis with others, to the physical environment, transportation, information and communications – including information and communications technologies and systems and other facilities and services open or provided to the public, both in urban and in rural areas (united nations general assembly 2006). the disability policy guideline of south africa offers standards to making public buildings accessible and allows persons with disabilities to redeem the benefits from the services provided by the government (department of public works [dopw] 2010:10). attention is directed to improving accessibility of ramps, parking and ambulation facilities. since then, the standards have been revised for the south african bureau of standard’s code of practice: the application of the national building regulations (south african national standard [sans] 2011) to further promote accessibility for persons with disabilities (part s: facilities for persons with disabilities). importantly, the latest revision occurred in 2011, following which the authors have been unable to locate recent literature regarding compliance of these aspects to ensure accessibility. prior to this, maritz noted that there was substantial non-compliance of the relevant aspects of the code of good practice to ensure accessibility. reasons for this were that the existing built environment was developed in compliance with previous building laws, the regulatory system is inadequate and difficult to enforce, and the existing legislation at the time was in conflict with the south african constitution, giving the right to barrier-free access for all (maritz 2008). anecdotal evidence exists where improvements to accessibility have occurred within the formal structures related to recent developments and where there is access to funding opportunities within the public and private sector. there is no evidence locally, and within africa, related to the investigation of accessibility of informal trading sites which play a significant role in the country’s economic, social and cultural activities. indeed, informal markets are both a resource for persons with disabilities to generate income through informal employment opportunities, as well as providing access to essential goods and services. the markets of warwick (hereafter referred to as ‘the markets’) were chosen as a case study to obtain evidence on the accessibility of one such site. this is specifically related to whether the infrastructural design adequately supports persons with mobility impairments by meeting the south african standardised requirements as well as exploring the perceptions of those persons with mobility impairments with respect to occupational safety factors within the markets. warwick junction, located in the centre of durban, south africa, is considered to be ‘the site of the most informal trading in the ethekwini municipality’ (hemson 2003:3). daily, hundreds of commuters, traders and visitors enter the nine diverse markets by taxis, buses and trains. the markets serve mostly people living in rural areas, local and surrounding townships and informal settlements in the province, as it is the main transport hub for traders and commuters who visit the area to trade in goods and services. most of the traders are from outside durban city, ‘trading and maintaining links to the countryside in a circulation of people and commodities which makes the survival of the rural and urban poor possible’ (hemson 2003:6). the markets, established in 1910 along the sidewalks of durban’s victoria street, have become an important heritage for the people of durban. there are approximately 8000 traders who operate within warwick junction. currently, many traders within the markets are third and fourth generation descendants of original traders (skinner 2009:106). through the challenges of poverty and trials of apartheid, this culturally rich architecture has become an important contributor to the south african economy. when visiting the markets, one will experience the unforgettable sights and sounds of the sales of different goods and services. under the unfinished flyovers, ad hoc bridges and bus shelters, the markets offer a place of trading and occupations that are rarely found anywhere else in the city. here, the commuters can receive advice and purchase products from traditional herbalists, handcrafted beaded jewellery, livestock, fruit and vegetables, bovine head meat and even shebeens1, which serve thousands of people entering and leaving the markets daily. the authors explored the markets by conducting interviews with traders and porters (barrow operators). an environmental analysis assisted in placing their views and opinions within their context and the perusal of relevant documents and policies allowed the authors to frame the outcomes. research method and design top ↑ design a qualitative approach using an instrumental single case study design with multiple sources of data was used (creswell 2013; yin 2014). the study setting and participants were selected through purposive sampling (table 1). table 1: overview of methods and participants. study setting figure 1 provides an aerial view of the markets. figure 1: aerial view of the nine markets of warwick (1) early morning market; (2) berea station mart; (3) music bridge; (4) herb market; (5) brook street market; (6) lime and impheph market; (7) victoria street market; (8) bead market; (9) bovine head market. this informal market is made up of nine smaller to medium-sized markets. when visiting the markets, one can make use of a main railway station, five bus terminals and 19 taxi ranks. roads, walkways and pedestrian bridges intersect the area, which is 10 minutes from the city centre. the markets offer a wide variety of facilities, services and merchandise. some of the goods and services that can be found in the markets include traditional cuisine, fresh produce, poultry, spices, flowers, traditional medicine, beadwork, traditional arts, crafts, music and entertainment merchandise, clothing and accessories (dobson, skinner & nicholson 2009:5). procedure data was gathered at the markets over a period of a week. semi-structured interviews: with six participants with open-ended questions were conducted. the central question was related to the participants’ experiences within the markets, with prompts towards barriers and facilitators and issues surrounding accessibility. interviewees comprised two traders, one passer-by and one porter – all with a mobility impairment – and two co-founders of a non-governmental organisation (asiye etafuleni 2013) that operates within the markets. these demographics are represented in table 1. the difficulty in obtaining participants with mobility impairments who utilised the markets is an indication of the inaccessibility of the area for them. direct observation: in this study included an environmental (accessibility) survey. direct observation in a case study occurs when researchers visit the location or study site in order to gather data. the data gathered can be in the form of observations that could be formal or casual. yin (2014) suggests that using multiple observers ensures the reliability of the observations made. data gathered and observations made by the authors are supported by visual aids (photographs), for which ethical clearance was obtained. additionally, authors reviewed various national and international documents such as policies, acts, briefs, legislation, regulations guidelines related to accessibility, disability and trading within informal markets – and perused relevant audiovisual material on the markets. analysis semi-structured interviews were digitally voice and video recorded. the accessibility (environmental) survey was supported with visual aids (photographs) and measurements. to ensure reliability, the authors collaborated with an isizulu translator who assisted in verifying the transcriptions and translations. the authors used nvivo 10 (qualitative data analysis software) with inductive reasoning during the coding process (miles, huberman & saldaña 2014). specific types of coding that were used in this study included initial coding (in-vivo and process coding); descriptive coding; emotion coding and values coding (saldaña 2013). using information gained, inter alia through interview transcriptions and data from the environmental analysis, the results were pooled and common themes were merged in order to facilitate a clear and concise discussion. ethical considerations issues surrounding informed consent, confidentiality, beneficence, veracity and scientific honesty were observed throughout the research process. ethical approval was obtained from the various gatekeepers of the study through an ethical process review as well as from participants themselves (informed consent). confidentiality was ensured by participants being informed of the potential use of the data obtained; video-recordings were viewed only by the authors and measures for confidential data storage were followed. pseudonyms have been used during all methods of dissemination of the research data. the principles of beneficence and non-maleficence were upheld by being sensitive to non-verbal behaviours of participants, by allowing withdrawal of participation if this was necessary, and by the non-invasive nature of the questions in the interviews. veracity was ensured by adequate acknowledgement of sources of data, documentation and keeping of accurate records, by reviews of transcriptions against audio and audiovisual recordings and by being explicit about the aims of the study. scientific honesty as outlined in the singapore statement on research integrity (2010) was also considered in the reporting and dissemination of the data and research findings. trustworthiness and rigour top ↑ a number of measures were implemented to ensure the trustworthiness of this study. these included, inter alia, credibility, dependability, confirmability and reflexivity. various techniques to ensure credibility or authenticity (brink, van der walt & van rensburg 2012) of the findings were employed. these included the use of multiple sources of data with data triangulation (olsen 2004; yin 2014), for example, documents, direct observation through the accessibility survey and interviews, peer debriefing (in order to probe the biases that may have affected the study), as well as member checking (where the interpretation of the data was reviewed and verified by the participants). dependability was ensured through the reduction of researcher bias through investigator triangulation. confirmability is said to guarantee that the findings, conclusions and recommendations are supported by the data with internal agreement between the investigators’ interpretation and the actual evidence (brink et al. 2012). this was ensured during the accessibility survey in which actual measurements were taken and matched against standard measurement data (ormerod & newton 2003; sans 10400-s 2011). various policies as well as the lived experiences captured by way of the semi-structured interviews were used together with these findings in order to move towards the internal agreement that represents confirmability and overall trustworthiness of the study. findings top ↑ as seen previously in figure 1, the markets are surrounded by staircases, foot-bridges, main roads and ramps leading to the entrances. findings from the environmental accessibility survey and interviews enhanced the authors’ understanding of the barriers and challenges faced by persons with mobility impairments within the markets. five major emerging themes will be discussed in this article. these are summarised in figure 2. figure 2: themes emerging from the study. theme 1: access to the markets (‘this is not the right place to try and struggle to find your way around’) the environmental survey raised various issues related to access points (such as roads, staircases, bridges, ramps and sidewalks) to the nine markets. these included the quality of the ramps and stairs (including handrails), sidewalks and road surfaces leading to these access points. ramps and certain stairs failed to meet the standard safety requirements (figure 3). figure 3: entrance with no handrails on either side of the staircase. additionally, floor finishes did not satisfy design specifications (unsmooth and slippery), therefore posing an increased risk for and fear of falls for persons with mobility impairments (ormerod & newton 2003:145): ‘so i battle you know if i go up the steps ... uh … it’s better if there are rails then i hold against the rails and walk up or down the steps’. (themba) ‘i don’t even use ramps because i’m afraid i might lose balance so i don’t ever use them’. (philip) doorways exceed the standard requirement, namely 750 mm width (sans 10400-s 2011: section 4.6) and participants, therefore, reported no difficulties moving through the doorways and entrances to the markets. surrounding sidewalks leading to access points were in a poor state, with many potholes and uneven floor surfaces being noted (figure 4). figure 4: pothole (120 mm deep and 530 mm wide). potholes were often filled with litter and broken glass, posing health and safety risks for persons using wheelchairs. whilst several sidewalks leading to access points met the design specification of 1500 mm in width, some traders occupied most of the sidewalk space to display their goods. this inevitably leaves limited space for persons with mobility impairments, especially those utilising wheelchairs, as there is no alternative accessible and safe route(sans 10400-s 2011: section 4.4). these poorly conditioned sidewalk surfaces and limited spaces often result in wheelchair users mobilising on the road to access the markets and/or taxi services (figure 5). ‘the road surface i would say, there is some work that needs to be done …, because there’s no, like, the pavement for us’ (moses). figure 5: wheelchair user accessing a taxi from the road. since the roads surrounding the markets and those leading to access points are main roads, they have a constant heavy flow of traffic. there are thus serious safety risks associated with the use of the surrounding roads to access the markets for persons with mobility impairments. ‘pavements are narrow … and also some taxis … they [drive] on the wrong side of the road. people have to jump from … the side of moving [in the road] or … on the high, they are on … if i’m … they are on the fast lane …, you know, people are risking their life accessing taxis from the fast lane’. (patrick) theme 2: access to interior goods and services (‘i don’t know, maybe they didn’t apply their mind there’) store aisles and passageways within the various markets satisfy the design specifications. however, participants reported difficulties moving in this space because of congested and busy aisles. ‘they are not wide enough, but considering the number of people, you know, they cannot be enough because of the number of porters and consumers’ (philip).many traders utilise the services of porters to transport their goods to and from their stalls and storage facilities. the environmental survey revealed two storage facilities. the entrances into the one market storage facility appeared poorly designed as a result of the steep ramps, which did not meet design specifications. a participant reported the following: ‘uhm … [chuckles] there are ramps, uh there are you know, they make storage uh, you know, accessible uh except one in brook street uhm … the city i didn’t, i don’t know, maybe they didn’t apply their mind there, it’s very steep …‘ (patrick) as a result, traders and porters no longer utilise the storage facility located outside this market to store their goods. transportation of goods up the steep ramps poses a risk and is considered difficult to achieve. ‘we transport goods from their trading sites into storages. some storages we have to climb the steps carrying goods on both shoulders [points to shoulders]. it’s very, very difficult because you can even fall and damage your customer’s goods or even injure yourself [points overhead – describing stairs]’. (philip) subsequently, this storage facility has been abandoned, and is now used as an ablution facility, which poses a health risk to traders and consumers (figure 6). figure 6: abandoned storage facility located outside the bead market utilised as an ablution facility. this study has also highlighted additional access issues. it is a common occurrence for persons with mobility impairments to be carried up the stairs at one of the markets in order to access stalls or the train station located within the market. ‘well if you here [on one side of the railway line] and you disabled there’s no way you can cross the railway line, that’s absolutely clear, so you will have to get someone to carry you up all the stairs uh ... and once you’ve managed that then you [get] through [the building going] over the station, then you’ve got to fall down the other side. so the only way you can cross would be to go through the herb market which still … is got a huge flight of stairs uh ... if you came up these stairs into the music bridge it might be a little bit easier uh ... but no, it’s getting from this side of town to grey street [the street on the other wide of the railway line] is impossible unaided’. (richard) persons with mobility impairments are unable to access upper-level markets. one of the markets is only accessible by way of three flights of staircases comprising of 36 stairs. staircases throughout the markets did not satisfy the standard requirements. most staircases are in a poor condition, with damaged, uneven surfaces, with variability being noted in the heights of the steps. this poses a safety (tripping) hazard: ‘i experience a lot of difficulty especially when walking up stairs my body gets sore in such a way i feel like crawling up, you know, when i go up the stairs’. (sihle) ramps throughout the markets do not satisfy the design specifications as there is an absence of handrails in some instances, whilst in other areas some are too steep for use and floor surfaces are not smooth, making access to markets, therefore, difficult for persons with mobility impairments. the environmental survey revealed that floor finishes throughout the markets were in a poor condition. most of the floors did not satisfy design specifications (smooth and non-slip flooring), therefore posing a safety hazard for persons with mobility impairments. ‘i would say it’s not that easy, because there are potholes, but i’m used to the area’ (themba). theme 3: ablution facilities (‘if i’m gonna pee now where am i gonna pee?’) accessible ablution facilities include access to toilet cubicles, toilets, washbasins as well as other equipment, which can be utilised by persons in wheelchairs or other persons with mobility impairments. currently there are no accessible ablution facilities for persons with mobility impairments within the markets.‘there are no disabled toilets around here, if i’m gonna pee now where am i gonna pee? if maybe they could put … disabled toilets around the markets, so it would make my life easier’. (moses) public ablution facilities are available. however, they are not wheelchair accessible, nor meet the standard criteria for use by persons with disabilities. the absence of these facilities may therefore prevent persons with mobility impairments from accessing the markets. the environmental survey revealed poor terrain for mobilisation (for example, open manholes and large potholes), presenting difficulties and potential danger for those wanting to access the facilities (figure 7). figure 7: entrance of public ablution facility with large pothole covered with wood, and absence of ramp leading into ablution facility. the entrance to the ablution facility does not have a ramp; it, however, does have steps and therefore access for those persons with mobility impairments is hindered. moreover, the ablution facilities surrounding the markets are not accessible to consumers after 16:00. although this is considered ‘rush hour’ with many persons passing through the area (as a thoroughfare) after their working day, these facilities remain locked. as a consequence, persons needing to use the ablution facilities, utilise public stall areas as an ‘ablution facility’ (figure 8). figure 8: area used as ablution facility when public ablution facilities are closed after 16:00 daily. the stall situated behind the ablution facilities in two of the markets has, hence, become a severe health risk because of urine and faeces on sidewalks which run into the surrounding drains. theme 4: health and safety health and safety issues were found to be a significant problem within the nine markets. firstly, emergency signage is located within only two of the nine markets. secondly, there is no indication as to where the emergency exits are situated. thirdly, participants were unaware of the procedures to follow in an emergency situation. lastly, as already mentioned, severe health risks flow from utilising certain areas for ablution which were not designated for ablution use. in the extreme and unfortunate case of a fire or an emergency requiring fast exit from the markets, factors one to three will reduce the ability of persons with mobility impairments utilising the markets to exit buildings (figure 9). figure 9: recent fire damage resulting in loss of trader goods and damage to storage facilities. security services, such as guards, are available within six of the nine markets. traders within all nine of the markets belong to a crime prevention team in order to prevent and reduce the crime within the markets. these are known as the ‘traders against crime’ (tac) and the ‘community policing forum’ (cpf). this results in adequate and sufficient security within the markets and also reduces the frequency and occurrences of crime. according to the participants interviewed, all felt safe and secure within the markets as they are aware of the security available. theme 5: transport services participants reported difficulties when crossing the roads that surround the markets. the difficulty of this task varied from participant to participant, and was dependent on their level of physical disability. a participant reported the following: ‘ja, it is a bit of a challenge, some other taxi drivers you know they don’t want to wait for me to like to get across you know, so others they are a bit rude’. (moses) participants also appeared to be unfamiliar with the context of designated disability parking bays within and surrounding the markets. the environmental survey revealed parking facilities available and accessible to only three of the nine markets, two of which have parking facilities available for both traders and consumers. there are a number of taxi pick-up zones which are located around the nine markets with each taxi zone servicing different geographical areas. according to the participants, they travel to the markets by public transport, more specifically taxis, and arrive and depart in close proximity to the market area (figure 10). figure 10: wheelchair user observed crossing market avenue from pick-up zone located on opposite side of the road. the one market taxi drop-off zone adhered to specifications and standards by having clearly marked mini-bus road markings. the designated taxi parking spaces are also accessible from the drop-off to the market. however, alongside the taxi pick-up zones are kerbs which lead onto sidewalks which do not have ramps from the road surface onto the sidewalks. the height of the kerbs measure approximately 170 mm which exceeds the standard requirement of 100 mm (ormerod & newton 2003:43). thus, persons using wheelchairs are obliged to propel themselves on the road when needing to access the taxis independently. otherwise, most will require assistance from others to transfer from sidewalks onto the road surface. for four of the markets, there are no allocated taxi pick-up zones. additionally, persons with mobility impairments will not be able to access the taxi pick-up zone of one market, because of the stairs linked to the over-riding bridge. there is one main bus rank located in one of the markets which accommodates approximately 25 buses. a train station’s platform leads to the markets over staircases. there are no accessible ramps available. this, therefore, hinders persons with mobility impairments in accessing the station and the markets. discussion top ↑ the authors explored accessibility within the markets, by gaining the perceptions of persons with mobility impairments within the markets, supported by direct observations through an environmental survey. in order to best represent the findings of this study, the discussion is presented within the context of available literature and policies.the south african constitution (1996) declares the founding values of our society to be the achievement of equality, human dignity, and the advancement of human rights and freedoms. the attainment of a good quality of life for persons with disabilities is included in the country’s main objectives, reflecting the systematic integration of persons with disabilities into all policies, plans, programmes and strategies at every level within the sectors and institutions of government (dopw 2010:3). however, whilst the south african government has put structures in place to identify and remove environmental barriers in order to meet the individual needs of persons with disabilities, barriers and restricting environments remain. the application of the national building regulations (sans 010400 2011 part s: facilities for persons with disabilities) clearly outlines the necessary technical requirements for the built environment to ensure accessibility for persons with disabilities. the findings of this study have highlighted many violations in the infrastructural design of the markets that pose a health and safety risk for persons with mobility impairments as well as seriously limit their participation and performance in everyday activities. with respect to accessibility, the environmental survey raised various matters related to access points, namely roads, staircases, bridges, ramps and sidewalks, to the nine markets. whilst doorways met the specifications by exceeding the standard requirement, the quality of ramps and stairs, sidewalks and road surfaces was problematic. as stated in a discussion paper by the south african revenue services (sars) with reference to persons with disabilities, modifications to infrastructure need to be made in order for specific structures to be accessible for persons with mobility impairments so that they are able to function or perform daily activities. these modifications include the installation of power-operated stairs or lift facilities or guided chairs to be used in a stairway (sars 2009:12). however, there is an absence of lifts within the markets even in those with multiple levels, with only access by way of steep ramps or staircases. furthermore, ramps and certain staircases failed to meet standard requirements, thereby preventing persons with mobility impairments from accessing goods from upper levels, with traders who have mobility impairments being limited to trading on lower levels. to move from one side of the markets to the other side divided by the railway line, is impossible without the assistance of another person, who would be willing to carry the wheelchair user and their wheelchair up and down the stairs. additionally, floor finishes did not comply with specifications, thereby posing a fall risk for those persons with mobility impairments as well as safety for wheelchair users. this therefore is a violation of the rights of persons with disabilities in accessing public facilities. storage facilities are in poor condition as ramps are too high and steep, and often used as ablution facilities. the ablution facilities are inadequate and do not cater for persons with mobility impairments as there are no designated accessible toilets, and an absence of grab rails within the toilets. roads surrounding the markets and leading to access points have a constant heavy flow of traffic. local municipalities have the responsibility to provide public transport in an accessible manner to persons with disabilities. according to ormerod and newton (2003) taxi ranks should ideally be located adjacent to major attractions such as retail areas, places of employment and entertainment and leisure centres. they further state that ranks should be located within 50  m – 100 m of the facility being served and if this is not possible then seating should be provided at the rank. where taxi ranks are arranged on the offside of the road, a pick-up and drop-off point nearby on the opposite side should be identified for passengers utilising wheelchairs (ormerod & newton 2003:27). the findings of this study reflected a number of pick-up zones; however only one market adhered to specifications and standards by having clearly marked mini-bus road markings. whilst public transport services are adequate as they drop-off passengers within close proximity to the market area, taxi ranks are in a poor condition. although sidewalks exceed the standard width requirement, the available width is less than the standard requirement when they are occupied by traders displaying their goods. whilst some of this trading on the sidewalks is regulated, there are other areas where it is not. town planners and city officials have to be aware in their design to accommodate for this informal trading. the height of kerbs exceeds the standard requirement posing a risk for persons with mobility impairments, especially those using wheelchairs, as they are obligated to propel themselves on the road. the train station was also found to be inaccessible; hence persons with mobility impairments are restricted to taxis and buses as a mode of transport. for buildings with parking of more than 50 motor vehicles, there must be at least one parking space per 25 parking spaces which is specifically provided for persons with disabilities, and must be clearly demarcated for such use (sans 10400-s 2011). therefore those who travel by private transport, for example a car, will experience difficulty accessing parking spaces which are suitable for their needs and may avoid visiting the markets. there is a lack of emergency signage throughout the markets, therefore commuters, traders and passers-by are unaware of emergency procedures to follow in the unfortunate case of an emergency. there were reports of a fire that occurred recently in the poultry section of one of the markets which destroyed everything. this emphasises the need for measures related to health and safety. so, whilst constitutions, policies and conventions, internationally and locally, are working towards a common goal of improving accessibility of any public facility, which includes informal trading areas such as the markets, many persons with disabilities continue to face challenges of accessibility (dopw 2010; south africa 1996; united nations general assembly 2006). this article highlights that implementation of the policies can take significant time and that context-driven solutions should be sought for information trading sites, since they form such a unique yet vital aspect of the country’s economy and access to people’s livelihoods. conclusion top ↑ whilst policies have been in place since 1996 to adjust infrastructure, the markets still remain inaccessible to persons with mobility impairments and do not meet the standardised infrastructural design. additionally, the general population utilising the markets of warwick will also be at risk in terms of safety. findings of this study may be invaluable in effecting a positive change in terms of the infrastructure of informal trading sites and improving accessibility for persons with mobility impairments. since informal trading sites are a significant contributor to the informal economy throughout africa, they are an important source of employment opportunity for all persons with disabilities. additionally, markets are often centralised together with transport facilities, which are important for persons with mobility impairments to access other forms of employment. a policy brief was submitted to the municipality for these infrastructural changes to be considered in the maintenance of the markets. this is only one step towards advocating for improvements for the people using this cultural heritage site. the lessons learnt may also be valuable in advocating for policy implementation in informal trading sites throughout africa. acknowledgements top ↑ the authors would like to acknowledge the participants from the non-governmental organisation, asiye etufaleni, as well as participants from the markets. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions p.n. (university of kwazulu-natal) was the project leader and supervisor; h.e.k. (university of kwazulu-natal) was the co-supervisor of the project; j.a., p.g., p.g., n.h. and h.k. (university of kwazulu-natal) were final year students who were instrumental in the data collection in this study. references top ↑ afrigis, 2012, ‘maps-warwick triangle’, viewed 12 september 2012, from https://maps.google.co.za/ asiye etafuleni, 2013, ‘about asiye etafuleni’, viewed 03 may 2012, from http://www.aet.org.za/about-asiye-etafuleni/ brink, h.i., van der walt, c. & van rensburg, g., 2012, fundamentals of research methodology for health care professionals, 3rd edn., juta & company ltd., cape town. creswell, j.w., 2013, qualitative inquiry and research design: choosing among five approaches, 3rd edn., sage publications inc., thousand oaks. department of public works (dopw), 2010, disability policy guideline, department of public works, south africa. dobson, r., skinner, c. & nicholson, j., 2009, working in warwick, school of development studies, university of kwazulu-natal, durban. hemson, d., 2003, cbd durban with special emphasis on warwick junction, human sciences research council, inanda. maritz, d.t., 2008, ‘determining the extent of compliance in the built environment regarding accessibility for physically disabled persons’, viewed 06 july 2012, from http://www.worldcat.org/title/determining-the-extent-of-compliance-in-the-built-environment-regarding-accessibility-for-physically-disabled-persons/oclc/247831275 miles, m.b., huberman, a.m. & saldaña, j., 2014, qualitative data analysis: a methodsssourcebook, 3rd edn., sage publications inc., thousand oaks. olsen, w., 2004, ‘triangulation in social research: qualitative and quantitative methods can really be mixed’, developments in sociology 20, 103–118. ormerod, m. & newton, r.a., 2003, accesscode: a web-based design code covering all aspects of inclusive design, surface (salford university research focus on accessible environments), univeristy of salford, salford. saldaña, j., 2013, the coding manual for qualitative researchers, 2nd edn., sage publications inc., thousand oaks. singapore statement on research integrity, 2nd world conference on research integrity, 21–24 july 2010, singapore, viewed 03 may 2012, from http://www.singaporestatement.org/statement.html skinner, c., 2009, ‘challenging city imaginaries: street traders’ struggles in warwick junction’, agenda 81, 101–109. south africa, 1996, constitution of the republic of south africa, act no. 108 of 1996, south africa. south african revenue services (sars), 2009, ‘discussion paper on proposed list of qualifying physical impairment and disability expenses under section 18(1)(d) of the income tax act and proposed criteria for diagnosis of a disability’, viewed 03 may 2012, from http://www.otasa.org.za/download/sars_discussion_paper.pdf south african national standard (sans), 2011, the application of the national building regulations part s: facilities for persons with disabilities (sans 10400 – s:2011), edition 3. united nations general assembly, 2006, ‘convention on the rights of persons with disabilities’, resolution / adopted by the general assembly, 24 january 2007, viewed 03 may 2012, from http://www.refworld.org/docid/45f973632.html yin, r.k., 2014, case study research: design and methods, 5th edn., sage publications, thousand oaks. footnotes top ↑ 1.an illicit bar or club where extensive alcoholic beverages are sold. abstract introduction background to inclusive education policy in south africa inclusive education policy and universal design for learning linkages between universal design for learning and education policy understanding support needs through universal design for learning conclusion acknowledgements references about the author(s) judith a. mckenzie department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa elizabeth m. dalton department of communicative disorders, faculty of health sciences, dalton education services international, university of rhode island, rhode island, united states of america citation mckenzie, j.a. & dalton, e.m., 2020, ‘universal design for learning in inclusive education policy in south africa’, african journal of disability 9(0), a776. https://doi.org/10.4102/ajod.v9i0.776 review article universal design for learning in inclusive education policy in south africa judith a. mckenzie, elizabeth m. dalton received: 06 july 2020; accepted: 26 oct. 2020; published: 15 dec. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: south africa has undertaken the implementation of inclusive education as a vehicle for achieving enhanced educational outcomes and equity. universal design for learning (udl) is an instructional design framework that takes into account the wide range of variations in skills and abilities that exist across all learners, and provides a research-based set of principles and guidelines for inclusive curriculum development and delivery. objectives: to locate udl within the specific inclusive education policy context of south africa and consider how this approach can support policy implementation. we have argued that udl could serve as a strategy to link policy imperatives with classroom practice, enabling effective communication between the different actors. method: we reviewed fundamental inclusive education policies in south africa and research relating to their implementation, and how they configure support and curriculum differentiation. we then compared this understanding with that proposed by udl and considered what could be gained in adopting a udl framework. results: we noted that udl has several advantages in that it allows for a common language between education stakeholders and gives new meaning to the interpretation of levels of support. conclusion: the implementation of inclusive education in south africa could be enhanced by introducing the concepts of udl into policy, research and teaching practice as a common language and vehicle for packaging support systems. keywords: inclusive education; universal design for learning; south africa; education policy; implementation. introduction in 2011, the authors of this article jointly presented a workshop on the use of universal design for learning (udl) to a diverse audience of therapists, teachers and education managers and published the experiences. given that this was a small reflective piece bringing together the conceptual underpinnings of south african education policy and the principles of udl, as reflected in the workshop evaluations, we did not anticipate that it would be as widely read and cited as it has been. it became the most downloaded article from this journal by the second quarter of 2015 and, currently (june 2020), has 116 citations according to google scholar (accessed on 22 october 2020). in this article, we explore why the combination of udl and inclusive education policy in south africa has struck a chord with teachers and researchers, and we speculate as to how this synchrony can be further developed, with particular regard for how curriculum differentiation for different levels of support needs can be attained within the inclusive education system in south africa. we begin our discussion by examining the development of inclusive education policy in south africa and then look at the critical role that curriculum differentiation plays within this policy and how the use of inclusive instructional design through the udl framework can support this. we conclude with an argument for using udl as a means to ensure appropriate flexible learning support, as opposed to fixed levels of support as proposed in south african policy. background to inclusive education policy in south africa with the advent of democracy in south africa, issues of curriculum change and provision of quality education to all children of all race groups assumed a high priority, largely because of the preferential treatment of white children under apartheid (gwalla-ogisi, nkabinde & rodriguez 2006). an overhaul of the entire education system was undertaken, and this included a reconsideration of special education and educational support. to this end, a consultative process occurred over several years which resulted in the development of education white paper 6: special needs education: building an inclusive education and training system (ewp6) (department of education 2001), which outlines education policy for children with disabilities within a broad inclusive framework. this policy aimed to address the post-apartheid configuration of special education as one of racial inequity, limited educational access and segregation of children with disabilities. furthermore, it was recognised that there are multiple causes of disadvantages. ‘special needs’, it was argued, should therefore embrace not only issues of disability but also include issues of economic, social and linguistic contexts, and psycho-social challenges, such as the effects of human immunodeficiency virus (hiv). the term ‘barriers to learning’ was adopted by the national commission for special needs in education and training (ncsnet) and the national commission on education support services (ncess) (department of education 1997) to reflect the diverse nature of barriers and emphasise the removal of barriers through environmental or social interventions rather than through individualised therapy or treatment. in so doing, a systemic approach was espoused in which, according to lomofsky and lazarus (2001): the factors which were conceptualised as barriers to learning and development were those which lead to the inability of the system to accommodate diversity, leading to learning breakdown or preventing learners from accessing educational provision. (p. 311) an inclusive education system was adopted where all children can learn together within a seamless system of support that addresses not only disability but also a range of barriers to learning arising from poverty, inequality and other social conditions (department of education 2001). this system is built upon two pillars: a process for identifying barriers to learning and establishing support needs to address these barriers. this is presented in the national strategy on screening, identification, assessment and support (sias) (department of basic education 2014). differentiation of the curriculum such that teachers can respond to diversity in their classroom and schools. strategies to achieve this are presented in the guidelines to responding to learner diversity through curriculum and assessment policy statements in the classroom (department of basic education 2011). education white paper 6 moves decisively away from determining educational provision according to disability type and focusses rather on comprehensive support needs. in recognition of the fact that barriers to learning may arise at any level of the system, support needs are not only located within the learner but also at a systemic level in, for example, teacher education or curriculum differentiation (department of education 2001). support is organised into different programmes, defined in the national strategy as: ‘structured interventions delivered at schools and in classrooms within specific time frames’ (department of basic education 2014:9). these programmes include the following: provision of specialist services by specialised professional staff. curriculum differentiation which includes adjustments and accommodations in assessment. provision of specialised learning and teaching support material and assistive technology. training and mentoring of teachers, managers and support staff. for the purposes of this article, we will focus on the curriculum differentiation support programme, whilst recognising that our suggested approach will have implications for all the other programmes of support (especially training and mentoring of teachers). within this understanding, three levels of support needs are identified, namely low-, mediumand higher-level support needs, with a progressive intensity, range and frequency of the different types of programme interventions. the three support levels are described within the programme of curriculum support as follows: curriculum differentiation for different levels of support needs low support needs (lsns) are those that can be addressed by short-term or one-off individual interventions and general capacity building of staff to meet a diverse range of learning needs. with regard to curriculum, there are adjustments made for lsns to accommodate a range of functioning in the general education classroom to meet the learners’ varied needs. adaptations are made at a classroom level and it is the role of a district-based support team to monitor the implementation and effectiveness of these adaptations on a regular, but infrequent, basis. moderate support needs (msns) are more specific and impactful and require longer-term interventions and consultative support. in terms of curriculum, additional planning time is needed from teachers to develop adapted instructional strategies and teaching support materials in consultation with curriculum advisors. these adaptations are monitored by the schooland district-based support teams. because these adjustments may require additional resourcing, they would need to be processed at a district level. high-level support needs (hlsns) are intensive needs, requiring frequent, specific consultative support. this describes individual children’s needs that require a specialised environment and supports within the regular classroom, or a specialised classroom or a specialised school organisation, each with support materials, facilities and personnel that are available on a high-frequency and high-intensity basis. the curriculum support at this level consists of ‘complex and on-going adjustments to the regular curriculum programme’ (department of basic education 2014:21). table 1 illustrates the different levels of curriculum adaptation skills according to the support needs that the teacher will be addressing. table 1: teachers’ required knowledge of curriculum differentiation at different levels of support needs. whilst levels of support needs are associated with school placements (lsns in ordinary schools; msns in ordinary and full-service schools; and hlsns in full-service and special schools), the policy is very clear that rigorous efforts need to be made to address all levels of support in any type of school and to seek the necessary support provision in the ordinary school first. the sias strategy states that: ‘the learner has a right to be supported in his/her current school or the school closest to his/her home. irrespective of the level of support required, every effort should be made to make the support available to the learner in his/her current/closest school. the district based support team (dbst) may consider accessing outreach programmes from full-service schools (fss) and special school resource centres (ssrc). the outplacement of the learner to an alternative setting to access a specialised support programme should be the last resort’ (department of basic education 2014:61). whilst it appears to be logical that support provision is incremental, with each higher level of support incorporating the lower levels, this is unfortunately not made explicit in the policy. the possibility therefore arises that settings which offer high-level support are lacking in medium and low support provision. therefore, it is clear that curriculum adaptation is complex and variable according to the level of support identified in the sias process. how then can the udl approach assist with unpacking this complexity? inclusive education policy and universal design for learning within south african disability policy, the white paper on the rights of persons with disabilities mandates a universal design approach defined as: ‘the design of products, environments, programmes and services to be usable by all persons to the greatest extent possible without the need for adaptation or specialised design’ (department of social development 2016:15). applied to curriculum design, an approach that addresses the issues of importance for successful inclusion of students with differing support needs in education is udl. the global education monitoring report on inclusion and education promotes the udl framework as being particularly relevant to a broad understanding of inclusive education as addressing barriers to learning, noting that: ‘the universal design for learning concept encapsulates approaches to maximize accessibility and minimize barriers to learning’ (unesco 2020:120). universal design for learning was conceptualised in the early 1990s by the educators and researchers of the center for applied special technology, now known as cast, in response to identified gaps between the needs of their students and their productive access to various instructional environments. center for applied special technology extended the previously existing principles of the conceptual framework of universal design (ud), through which physical environments could be designed for the widest range of differing access needs (center for universal design 2008), and applied this way of thinking to educational environments. the udl framework is based on neuroscientific research on how the brain functions (rose & meyer 2002). the three core principles of udl, based on the recognition, strategic and affective neurological areas, address learner variation through proactive curriculum design. these principles specifically stated are: (1) multiple means of representation – presenting information and content in different ways; (2) multiple means of action and expression – differentiating the ways that students can express what they know; and (3) multiple means of engagement – stimulating interest and motivation for learning (cast 2020; meyer, rose & gordon 2014). through the application of udl principles and the accompanying udl guidelines (cast 2020), educators can conceptualise the many ways that instruction and materials can be varied to address the full spectrum of students’ differing learning needs – from low to high – and can design curricula and learning environments to address the needs of all students through a varied and comprehensive continuum of learning options and support choices. since its inception in the united states of america more than 25 years ago, udl has grown to be widely recognised nationally and internationally as an important conceptual strategy and framework for the effective achievement of inclusive education (davies, schelly & spooner 2013; katz 2012; meo 2008; perez, grant & dalton 2016). case study research reveals positive linkages between udl implementation and inclusive education outcomes for high school students (katz 2013), pre-k-12 and college students (de freece lawrence 2020) and online learning students (bandalaria 2020). in the united states of america, the use of udl to guide the development of inclusive educational supports and environments through multisensory learning centres has been shown to be effective in helping elementary students with learning, social and attention problems (metcalf et al. 2009). students with learning disabilities have made meaningful gains in reading comprehension and decoding skills, as well as gained access to the grade-level curriculum through the systematic use of the udl framework (cook & rao 2018). teachers and teacher candidates increased their abilities to effectively design and implement technology-infused lessons and incorporated more differentiated options and varied teacher strategies following training in udl principles and guidelines. however, these studies also found that teachers need more experience in actually implementing the udl principles in their classrooms (courey et al. 2012; harris & yerta 2020). the most recent global education monitoring report entitled ‘inclusion in education: all means all’ promotes udl as an effective strategy for the inclusion of all children in education and notes that it has been adopted in education policy in ghana and other lowto middle-income countries (unesco 2020). there are also challenges to the implementation of inclusive education through the use of the udl curriculum design framework and guiding principles that bear consideration. in a study carried out in south africa, song (2017) found that whilst teachers in low-resourced schools recognised the potential benefits of udl, they expressed doubts about implementing the approach in their own schools. this highlights the need to adapt udl to the particular context and the importance of teacher education. bandelaria (2020) identifies the need for a holistic and comprehensive approach to udl to overcome exclusion from learning opportunities and to contribute to a country’s social transformation and development. arndt and luo (2020) found that educators in china understood the need for providing varied means of learning for their students, but they felt that more knowledge and skills were needed to be able to fully accomplish this, or to integrate the udl framework in their instructional practice. the real need for more professional development opportunities was identified. research conducted by reynor (2020) with pre-service teachers in ireland revealed that whilst planning efforts for udl integration did lead to more pupil-centred planning and better-informed views of the needs and capabilities of students with disabilities, participants noted that significantly more time was needed to prepare lessons that addressed the udl framework and that they doubted they would realistically have time to do this throughout their lesson planning. concerns also emerged regarding the use of technology which was ‘problematic at times, as internet connectivity was not consistently available, especially in rural schools’ (p. 263). both benefits and challenges relating to udl implementation in various settings, especially in still-developing and/or lower-income countries, should be seriously considered in any comprehensive inclusive education planning efforts. linkages between universal design for learning and education policy the conceptual framework of udl has important linkages with the educational policy in south africa which can assist in the planning and implementation of inclusive educational environments. we argue that this happens in several important ways and discuss these in some depth below: universal design for learning provides a clear, understandable framework that facilitates communication between multiple team members. the udl framework is interdisciplinary and clearly outlined in numerous texts (grant & perez 2018; eds. gronseth & dalton 2020; meyer et al. 2014; rose & meyer 2002). teachers, therapists and educational planners, educated in many approaches that strive to diversify curriculum and instruction such as multisensory instruction (fernald 1943), taxonomy of learning (bloom et al. 1956), multiple intelligences (gardner 1983) and differentiated instruction (tomlinson 1999) can leverage such knowledge and find a common language to talk about support for learners who experience barriers to learning. these principles are given expression and a framework for action in the core udl principles of multiple means of engagement, representation and action and expression and the udl guidelines that accompany them. in terms of south african policy, this can facilitate the development of individual support plans, as outlined in the policy on sias (department of basic education 2014). the multi-disciplinary team, including the parents, can use the udl framework to develop a common understanding of instructional supports that are needed for the child to succeed. the udl framework offers options, means and examples that can help educators to implement desired and applicable learning approaches, such as those mentioned earlier. the three core principles of udl guide educators to adapt their instruction in many different ways through the use of varied materials and approaches. examples of these include the following: for multiple means of engagement, educators should provide options for recruiting interest, sustaining effort and persistenc and self-regulation; for multiple means of representation, provide options for perception, language and symbols and comprehension; and for multiple means of action and expression, provide options for physical action, expression and communication and executive functions. additional details regarding options to be offered by udl implementation are available in the udl guideline grid (cast 2018). universal design for learning fosters professional collaboration and communication to achieve inclusive learning: whereas teachers speak the language of the curriculum, therapists are more steeped in medical or psychological terms. by paring down teaching and learning to the three processes of flexible methods of presentation, expression and engagement, all those working with the learner can collaborate with a common understanding (dalton, mackenzie & kahonde 2012:6). the language of the udl principles and guidelines is not specific to one setting or another, but rather flexible methods or ‘multiple means’ apply to all settings where learning can happen, whether therapeutic or educational. by reducing variations in: terms, or ‘paring down’ through the shared use of the language of udl, professionals of different disciplines can better understand each other’s needs and intentions regarding the implementing and sustaining inclusion. universal design for learning is interdisciplinary in nature and refers not to one professional’s role and approach (for example, the role of the therapist as against that of the teacher) but rather to strategies for adaptation which can be used across disciplines. in the south african context, song (2017) found teachers were using some udl practices but needed to develop their common language through professional development to realise the opportunity that udl might offer in this context. in south africa, large class sizes (up to 85 children per class in some rare cases) are likely to remain a reality for some time to come and teachers should therefore be trained in how to deal with this situation (marais 2016). one strategy is to build diversity into learning and teaching at the planning stage, as specific adaptations for different learner needs are very taxing under these conditions. as a design framework, udl starts from the planning stage and aims to design and deliver instruction for the widest range of diversity amongst learners by integrating variation in how teachers represent the content of the subject matter taught, how teachers engage students in learning through interest and motivation and how students show what they have learned in diverse ways and diverse products. the busy teacher can be prepared to deal with levels of diversity that are proposed within ewp6 through proactive instructional design. ewp6 places the teacher at the centre of the implementation of inclusive education and highlights the importance of ongoing professional development. in the udl workshop mentioned above (dalton et al. 2012), participants made a strong plea for further training in udl. what became apparent is the attractiveness of one overarching framework for addressing a continuum of support needs through the curriculum, from low through to high support needs. given the segregated special education system that continues to exist in south africa today, because of a multiplicity of cultural and historical factors such as apartheid, family protectiveness, lack of awareness and/or lack of professional preparation opportunities, it becomes imperative for teachers to understand that disability support needs, although they might include specialised adaptations, should always incorporate lower levels of support, in terms of curriculum differentiation and planning for diversity and that these needs belong in the same conceptual framework of udl. the system set up by the south african council for educators for mandatory professional development could include endorsement of well-designed and delivered short courses on udl. universal design for learning can be high-tech or low-tech, or even no tech. whilst high-tech tools can offer many different options for varying content, means of response and learner engagement, these important areas can also be addressed through the variation of instructional strategies and use of simple tools and resources in creative ways by following the udl guidelines and thoughtfully applying them in any given situation. this is reassuring for a south african population in which both more affluent and less affluent communities require quality education. with careful thought, planning and a full understanding of the udl principles, both well-resourced and less well-resourced systems can cater to the diversity in their classrooms through the creative use of existing resources with a view to increasing equity and access. understanding support needs through universal design for learning as a result of the complexity of support needs, there is a tendency to view the levels of support as distinct from one another, rather than as a continuum of support. one of the unfortunate consequences of this view is that educators have come to view levels of support as associated with a certain school placement, despite repeated claims to the contrary within the sias policy. in a study conducted on teacher education needs, mckenzie, kelly and shanda (2018) found that many educators understood the support process as meaning that children with lsns should attend regular schools, those with msns are best placed in full-service schools and those with high support needs in special schools. in reporting on the implementation of inclusive education, the department of basic education noted that ‘in contrast with the special schools, the highest incidence of learners with disabilities in ordinary schools are learners with specific learning difficulties, attention deficit disorder and partial sightedness’ (p. 19). this same report further notes the growth in special schools over the period of implementation of ewp6. these observations indicate that children with disabilities, who are viewed as having high support needs, remain excluded from the mainstream of education. this is a repeated finding in the south african context and raises questions of how disability is actually being addressed within inclusive education (donohue & bornman 2014). universal design for learning facilitates a continuum of support rather than discrete categories of support. the principles of udl imply that variation in instructional design, delivery and support should be built into every classroom and lesson as planning for diversity is the starting point and not an add-on. variation across students in their needs, capabilities, skills and interests is the norm, and not the exception (meyer et al. 2014). universal design for learning avoids any categorical descriptions and focusses teachers’ attention on learner variability and diversity from the start. instead, a range of adaptations to meet learner needs and enable participation can be drawn upon. this avoids a situation where levels of support are associated with certain categories of adaptations but not others. rather there is a recognition that, as stated in ewp6 (2001), all children need support to varying degrees at different times and all children need flexible support systems that will enable them to become better learners. one such learning continuum model is outlined by bray and mcclaskey (2014) in their work on personalised learning, which describes the continuum to develop expert learners as moving initially from having student choice, to engagement, to motivation, to ownership, to purpose and finally to self-regulation. this continuum outlines a more ‘learner-centred’ environment, and the importance of such is described thus: ‘learner-centred environments offer active and collaborative learning where learners are able to generate questions, organize inquiry projects and monitor their own products and progress’ (bray & mcclaskey 2014:168). furthermore, such environments enable all children to benefit from adaptations when and where needed – adaptations are not only made for children identified as needing support but also for other children who can benefit from multiple means of representation, engagement and multiple means of action and expression. in a learner-centred environment, students become aware of and are encouraged and supported in exploring the varied options for accessing, integrating and expressing learning that has been built into the design of the learning environment. such awareness develops each student as a ‘decision-maker’ on his or her own path to learning success and becoming an expert learner. the most recent version of the udl guidelines, version 2.2, emphasises the development of expert learners as the ultimate goal of education, defining expert learners as being purposeful and motivated, resourceful and knowledgeable, strategic and goal-directed (cast 2018). these guidelines, when implemented with integrity, support a continuum of learning options in every classroom and work towards the outcome of making every student an expert learner. conclusion universal design for learning can only be implemented through systemic change, and the possibility that it might be the driver of such change is an exciting one. however, this will require policy and planning support from educational administrators who will enable training and will recognise and support the best udl practice. we would therefore recommend the following strategies going forward: teacher education programmes, in-service and pre-service, formal and informal, should include the principles and guidelines of udl as a framework for developing classrooms that cater to the widest range of diversities. support should not be thought of as low, medium or high and equated with placement options. it would be more useful to think of curriculum support in terms of what support each teacher needs to apply the principles of udl to facilitate learning for every student and build a continuum of learning. consideration should be given to the concept of ‘targeted universalism’ as an organising principle for the implementation of systemic change. as described by the haas institute (2019) at the university of california at berkley: targeted universalism means setting universal goals pursued by targeted processes to achieve those goals. within a targeted universalism framework, universal goals are established for all groups concerned. the strategies developed to achieve those goals are targeted, based upon how different groups are situated within structures, culture, and across geographies to obtain the universal goal. such an approach can support the integration of udl within the system of education, addressing the varied social, emotional and learning needs of differing groups whilst striving for the universal system-related goal. reasonable accommodation as defined in the white paper on the rights of persons with disabilities: ‘ensures that persons with disabilities enjoy, on an equal basis with others, all human rights and fundamental freedoms.… reasonable accommodation support tends to be individual and impairment specific’ (department of social development 2016:59). support for inclusive education can be redefined in terms of udl and reasonable accommodation. although udl can help us to plan for an increasingly wide range of diversities (as teachers receive training and support in these strategies), reasonable accommodation remains necessary for disability-related needs, such as sign language and/or braille (united nations 2006). furthermore, this approach accords with disability policy in south africa where ewp6 states that ‘principles of universal design and reasonable accommodation provisioning must inform all new and existing legislation, standards, policies, strategies, plans and budgets’ (department of education 2001:107). in its general comment no. 4 (2016) on the right to inclusive education, the un committee on the rights of persons with disabilities urges states to adopt a udl approach to develop flexible and effective ways of adjusting to meet the requirements of every child, including those with disabilities. at the same time, the committee recognises that if article 24 of the convention, referring to education of people with disabilities, is to become a reality, then schools must also provide reasonable accommodation which meets the specific disability-related needs that learner might have. the provision of an accessible environment is necessary but may not be sufficient where specialised provision is required. therefore, a continuum of supports ranging from generalised to specialised is recommended for educational systems to address the full range of learning challenges that exist. whilst a wide range of learning needs can be met through flexible curriculum design, impairment-specific needs such as the use of braille or learning south african sign language must also be catered for as reasonable accommodation within an inclusive education system. research on applications of udl in the educational environments of countries such as south africa and others around the globe would gather evidence of the effectiveness of various models for udl implementation and should strengthen the argument of implementing udl in lowand middle-income countries. in this article, through an examination of support provision in inclusive education policy in south africa, we have argued for a reconfiguration of the way in which we understand support as one of udls with reasonable accommodation for learners with disabilities. acknowledgements the authors acknowledge the support provided by amani karisa. competing interests the authors have declared that no competing interests exist. authors’ contributions j.a.m. drafted the initial concept. j.a.m. and e.m.d. both shared ideas and content and collaborated to develop the article. ethical consideration this article followed all ethical standards for a research without direct contact with human or animal subjects. funding information this article falls within the teacher empowerment for disability inclusion (tedi) project. the tedi project is a partnership between the university of cape town and christoffel-blindenmission (cbm), and is co-funded by the european union 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abstract introduction research methods and design results discussion and findings limitations of the study conclusion and recommendations acknowledgements references about the author(s) selvarani moodley school of health sciences, university of kwazulu-natal, south africa gugu mchunu school of nursing and public health, university of kwazulu-natal, south africa citation moodley, s. & mchunu, g., 2019, ‘current access and recruitment practices in nursing education institutions in kwazulu-natal: a case study of student nurses with disabilities’, african journal of disability 8(0), a429. https://doi.org/10.4102/ajod.v8i0.429 original research current access and recruitment practices in nursing education institutions in kwazulu-natal: a case study of student nurses with disabilities selvarani moodley, gugu mchunu received: 05 sept. 2017; accepted: 29 aug. 2018; published: 20 feb. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: while institutions of higher education may have increased access and accommodation for students with disabilities, institutions primarily providing nurse training in south africa do not mirror the same practice. objectives: notwithstanding the integration of disability policies enacted in south africa in 2010, a majority of people with disabilities are still excluded from the activities of society equally applicable to nursing education. this article describes the current access and recruitment practices for student nurses with disabilities (snwds) in nursing education institutions in kwazulu-natal to provide baseline data, which is largely absent in nursing institutions. method: a concurrent mixed-method design using a multiple embedded case study approach was employed. this article presented phase 1 of the study, a quantitative survey of all private nursing education institutions (n = 27), complemented by individual, in-depth interviews with snwds (n = 10). quantitative data were analysed using spss version 24, with a response rate of 78% (n = 21), whereas qualitative data were analysed using content analysis. results: the findings revealed that the majority of private neis lack policy guidelines for recruiting snwds; however, other means of guidance is sought, for example, using the technical assistance. while neis were willing to recruit snwds, access to clinical sites, lectures, support systems and reasonable accommodation was challenging. conclusion: private neis are providing an inclusive education to all students including those with disabilities; however, they still have a long way to go in meeting the needs of snwds with regards to support and accommodation. introduction higher education institutions have been encouraged to ensure access for and participation of people with disabilities; however, policies in the institutions of higher learning that train nurses still show gaps in meeting the needs of learners with disabilities. previous education policies and practices have been focused along racial and political lines (foundation of tertiary institutions of the northern metropolis [fotim] 2011), while students with disabilities were often not included in mainstream schools and special schools accommodated those who could afford it (mutanga 2017). the post-apartheid era brought with it many changes, such as an equal opportunity for all learners, and although access for woman and black students to higher education has increased, limited consideration has been given to students with disabilities, resulting in them being excluded from higher education (howell 2006). integration of disability in south africa’s policies was enacted in 2010, with the aim of ensuring equal rights to all people in south africa, including people with disabilities. there are various policies and frameworks in south africa related to disability, which prevent discrimination, including: the constitution of south africa (republic of south africa 1996); the employment equity act (republic of south africa 1998); disability policy guidelines (republic of south africa 2010) and the higher education act 101 of 1997. however, specific policies related to higher education are very limited, fragmented and vague (fotim 2011; gelbar et al. 2015). despite these policies and regulations to protect and integrate people with disabilities, the majority of those with disabilities are still excluded from the activities of society, which applies to nursing as well (republic of south africa 2010). current policies reinforce an equitable education for all, including people with disabilities. the world report on disability (world health organization 2011) estimates that 15% of the world’s population have some form of disability, which can be equated to more than a billion people. according to the disability status report, 10.3% of working age people between the ages of 21 and 64 years in the united states have a disability (erickson, lee & von schrader 2012). in south africa, 7.5% of the population is said to have disabilities (statistics s a 2011). less than 1% of the student population registered with the disability unit in south african higher education institutions, which equates to less than 2% of the overall student population (fotim 2011). these statistics suggest that students with disabilities are a minority group and, as such, can be subjected to discrimination and exclusion in a world created for the able-bodied. a review of disability literature in south africa has indicated a limited number of studies in the field of disability, particularly in nursing education, which could indicate that it is still in the exploratory phase (mutanga 2017). studies on access usually refer to those in higher education (fitchett 2015; lyner-cleophas et al. 2014; matshedisho 2007). furthermore, the fotim report indicates a low representation of students with disabilities in health sciences (fotim 2011). various reasons could be presented for this under-representation and can all influence the recruitment of student nurses with disabilities (snwds) in nursing education institutions (neis), such as: negatives attitudes and stigma attached to disability (de cesarei 2014); discrimination by nurse educators (ryan 2011); recruitment policies; teaching and learning practices and the nursing curriculum. such discrimination overtly discourages students with disabilities from entering the nursing profession. structures within the nursing profession itself, such as the absence of disability policy guidelines and in particular the clinical component of the undergraduate nurse training programmes, make it difficult for snwds to become registered or enrolled nurses. the clinical component is designed as a ‘one size fits all’ model for able-bodied students and is therefore looked at as being essential (ryan 2011). usually, the determination of appropriate accommodation in license-based programmes depends on whether the accommodation would pass the students’ development of ‘essential skills’ necessary for competent performance in the profession. nursing programmes require student nurses to complete a minimum number of clinical practice hours per nursing programme before being entered for an examination. this places the neis, as well as educators, in a difficult situation, to ensure that the snwds meet the requirements and are deemed competent prior to completing the programme (ashcroft et al. 2008). an appraisal of available literature reveals limited studies on access and recruitment practices, or how well assessment and teaching practices cater for the needs of snwds in higher education institutions (heis) and neis in south africa (matshedisho 2007). even though universities have recently emphasised the role of the disability support services, increased access and support services are needed in universities (ntombela & soobrayen 2013). this article reports on the results of a survey of all private neis and one public university in south africa regarding their current access and recruitment practices. the study draws from christensen and rizvi’s (1996) socio-political model of disability, an updated ideology, which emphasises barriers in the education system that disable a person, and hence excludes them from the nursing profession. this view shifts the focus from the individual with the ‘deficit’, as explained in the medical model of disability, to examining how recruitment practices and teaching and curriculum practices pose a problem to snwds. theoretical framework: framework for integrating student nurses with disabilities into nurse training programmes in kwazulu-natal nursing education institutions the framework guiding the study was adapted from the integrated primary health care model by sibiya and gwele (2013) and donabedian’s systems theory (donabedian 1968). the phenomenon of interest in this study is integrating students with disabilities in nurse training programmes through various approaches, namely curriculum integration (roxburgh et al. 2008), recruitment (wood & marshall 2010), access and accommodation (roxburgh et al. 2008), clinical placement (ashcroft & lutfiyya 2013) and the academic environment (tee et al. 2010). these five approaches are seen as the context and vehicle through which students with disabilities are incorporated into nurse training programmes. the concepts underlying the framework include an enabling environment, human resources, organisational support and productivity. enabling environments are factors that contribute to the smooth functioning of an organisation such as human resources, organisational support services and collaboration (sibiya & gwele 2013). in the context of this study, an enabling environment is necessary to promote the smooth integration of snwds into nurse training and includes the access and recruitment practices at neis in the different nursing programmes, clinical placement and academic environment. identifying barriers and enablers of integrating snwds in nurse training will promote an enabling environment. problem statement the number of nswds entering the nursing programme in south africa is increasing, even though the exact number of these students is unknown (neal-boylan & miller 2017). despite the introduction of the disability policy guidelines (republic of south africa 2010), students with disabilities are habitually effectively excluded from nurse training programmes, and hence from the nursing profession more broadly. this is mainly because of the absence of policy guidelines and the clear identification of the ‘essential skills’ needed to practise as a nurse. these can then be used to develop clear and realistic disability access guidelines for programmes, without violating the integrity of nursing preparation. this article, therefore, aims to describe the current access and recruitment practices for snwds in neis in kzn. research methods and design this article’s purpose was to describe the current access and recruitment practices for snwds in neis in kzn. research question what are the current access and recruitment practices for snwds in neis in kzn? design a descriptive, qualitative design using a concurrent mixed methods case study approach was employed. a quantitative design was employed to explore the current access and recruitment practices of snwds in neis. this article presents phase one of a much larger phd study, a quantitative survey of all private neis (n = 27), complemented by a qualitative phase of individual in-depth interviews with snwds (n = 10). an instrumental descriptive, exploratory case study approach was used for this study (yin 2014:10) because it enabled the researcher to look at disability in the context of nurse training to gain an in-depth understanding of the disability (rule & john 2011:4). research setting this phase of the study took place in all private neis in kzn and one south african university. the private neis were purposively selected as they are more independent, and function as a stand-alone nei, where decisions and procedures with regard to snwds can be made by the nei itself without any outside influence. sampling and participants the list of neis from the south african nursing council (sanc) website was used as a sample frame (polit & beck 2014:180). a self-administered survey was administered to 27 neis (n = 27) and one public south african university included as a deviant sample, as these types of cases are difficult to obtain. the response rate of the survey was 78% (n = 21). snwds were purposively selected (polit & beck 2014:179), because they met the inclusion criteria of having a disability, being a learner in one of the nursing programmes, and being willing to participate in the study. data collection and analysis research instruments two types of data collection instruments were utilised in this study, namely survey questionnaires for all neis, strengthened by a semi-structured interview guide for snwds. the self-report, semi-structured survey questionnaire was adapted from a study by wray, gibson and aspland (2007). the questionnaire consisted of two sections: section a, to obtain demographic data, and section b, to explore the current practices of integrating snwds into nei training programmes in kzn, with regard to access and recruitment practices. demographic information included gender, age, period of employment and highest level of education. section b elicited information on the access and recruitment practices for snwds and consisted of both open-ended and closed-ended questions. the semi-structured interview guide elicited information on the experiences of snwds with an emphasis on the access and recruitment practices at neis. the guide was flexible enough to allow the snwds to express themselves, and they were given an opportunity to raise concerns relevant to the study, even if it was not mentioned in the interview guide. individual interview individual face-to-face interviews were held with ten snwds at a date, venue and time convenient to them. all interviews were tape-recorded with their prior consent, and after explaining the ethical aspects including no monetary payment for participation. data analysis the quantitative data collected were captured and subsequently analysed using the statistical package for social sciences (spss version 24). descriptive statistics, such as frequencies and percentages, were used to summarise the data (polit & beck 2014:216). the data produced from the open-ended questions were analysed using thematic analysis as presented in this article. content analysis was used to analyse qualitative data obtained through the individual interviews with snwds (hsieh & shannon 2005). the individual interviews were transcribed verbatim; thereafter, manual coding was performed on the raw data. the data were divided into meaningful units for coding and categorising before they were themed. ethical considerations ethical approval was obtained from university of kwazulu-natal (ukzn) ethics committee (reference number: hss/1367/015d). individual consent was obtained from each participant to participate in the study, and to have their voices recorded. participants were reassured that their names would be kept confidential, and their right to self-determination, privacy, anonymity, confidentiality, fair treatment and protection from harm and discomfort were respected (burns & grove 2009; emanuel et al. 2004). results the presentation of the findings was guided by the research questions and conceptual framework. findings are presented according to socio-demographic information, current access and recruitment practices of nurse training programmes. socio-demographic data the majority of the principals of the neis were female 95.5% (n = 19), and only 9.5% (n = 21) were male. the ages of the principals of the neis ranged between 31 and 65 years. the majority of the principals (81%, n = 17) were over the age of 50 years, 9.5% (n = 2) were between the ages of 41 and 50 and 9.5% (n = 2) were between the ages of 31 and 40. the majority of the students with disabilities were female (n = 7) and the remaining three were male. snwds had a range of disabilities including vision impairment, hearing impairment, mobility impairment, dyslexia, physical disabilities such as missing digits and impaired hand and chronic conditions that were disabling such as arthritis. current recruitment practices of student nurses with disabilities at nursing education institutions this study findings revealed that the majority of the principals of private nei (76.2%; n = 16) are directly involved in recruiting snwds. eighty-one per cent (n = 17) of neis do not have internal policy guidelines for recruiting snwds; however, alternate sources are used as a point of reference, including the employment equity act (act no 55 of 1988); the code of good practice (2015); technical assistance guidelines (2015); the skills development act (1998) and the integrated national disability policy guidelines (republic of south africa 2010). only 14.3% of students (n = 3) developed a disability while in the nei, the remaining 85.7% were either not disabled or did not disclose their disability. the data collected from the neis contradicted data collected from the snwds. while one nei indicated not applicable on the questionnaire, during the individual interviews with the snwds, the student revealed completing the enrolled nurse programme at the same nei. the snwds further indicated that neither the lecturers nor the principal had noticed her disability, nor did she disclose it, as she feared she might be excluded from the nursing programme, as cited below: ‘all my lecturers didn’t notice i didn’t have a finger, even the principal, all of them they didn’t notice.’ (participant 4, martha, female, 24 years old) a majority (85.7%, n = 18) of neis requested a declaration of health and/or disability prior to selecting students for the nursing programme; two (n = 2) neis requested it at the commencement of training, and at periodic intervals during the students’ training. current practices of access to nursing education institution training programmes access to nurse training programmes is similar amongst the different neis, which requires all students to complete an application form, and attach their curriculum vitae. in some neis, selection is based on the results of a test students are obliged to take. this suggests that there is no discrimination between able-bodied and snwds and that all students are therefore treated equally. one student noted: ‘well, my experience on admission to the nursing college, […] i can’t really comment much about that. i didn’t have any problems, ’cause we follow a procedure like everyone else: you go and write a test, which consist[s] of [an] english essay and the mathematics, and the physical science. so, we wrote that exam and then based on who got the highest mark[s], that’s how we got accepted’. (participant 7, john, male, 37 years old) in addition, the application form includes a section to be completed eliciting information about the students’ disability. this was not accurately completed, as snwds deliberately chose not to disclose their disability because of the fear of stigma and discrimination. for example, one hearing impaired student recounted: ‘i do feel that if i do put on the form that i have a disability, it may affect my chances of getting in, or lessen my chances i should say. um, and because it doesn’t affect my work, i don’t find it necessary. really, i’ll just tell them verbally that i have a hearing problem when i get there’. (participant 2, katy, female, 24 years old) on the occasion where a decision needs to be made regarding a student’s fitness to train as a nurse, the nei consults different key stakeholders. table 1 indicates key stakeholders from the multidisciplinary team involved in deciding on the student nurse’s fitness to undertake a nursing programme: nursing service manager (12.5%, n = 2); principal of the college (82.4%, n = 14); college council (12.5%, n = 2); doctor (52.6%, n = 10); human resource practitioner (12.5%, n = 2) and the applicant themselves (18.3%, n = 3). snwds are sometimes referred to the occupational health nurse (30.8%, n = 4), social worker (8.3%, n = 1) or psychologist (33.3%, n = 4). table 1: key stakeholders involved in decision-making regarding the students’ fitness to undertake nurse training. table 2: access to clinical sites. a common thread that emerged amongst snwds was communication barriers, especially in hearing impaired snwds when lecturers spoke in a very soft tone, as indicated in the following: ‘…especially at college, when writing the notes while the teacher is busy educating us. sometimes i can’t hear. she can’t write the notes, she so difficult’. (participant 8, isobel, female, 41 years old) another student noted: ‘they understood, and they allowed me to sit in the front. they spoke louder and usually they would give me eye contact while lecturing, and that helped a lot. there were some strict ones that don’t want to hear anything you have to say. hey, they just want to lecture and leave, so i didn’t want to bother them with my situation’. (participant 2, katy, female, 24 years old) the above quote suggests that while some educators are willing to assist and accommodate snwds, other educators are not so accommodating. nursing education institutions perceive students with chronic conditions, such as epilepsy, to have a disability and reported that these students needed more time to grasp the teaching material as compared to other able-bodied students. the neis further reported that students on chronic medication, such as anti-epileptics, experienced side effects for example altered thought processes, decreasing a student’s concentration span. access to support systems a percentage of 52.4% (n = 11) of the neis indicated having lecturers with specialist skills and training to support and manage snwds, the remaining 47.6% (n = 10) indicated a lack thereof. specialist skills were not specified, but most neis indicated that educators were registered nurses, and therefore perceived them to be able to manage snwds. a strong source of support was other colleagues, and friends of snwds, who were more than willing to assist by sharing notes, for example. access to reasonable accommodation more than half of the neis surveyed did not provide support in the form of modified equipment (86.7%, n = 13), modified workstations during an objective structured clinical examination (85.7%, n = 12), made existing facilities accessible to snwds (64.3%, n = 9), modified test times (78.6%, n = 11), allowed for special leave on duty (78.6%, n = 14), provided training or retraining (71.4%, n = 10) and provided counselling (92.3%, n = 13). accessing the clinical area for snwds was challenging because of a lack of funds for transport, as snwds already had to pay fees for training at neis. sometimes the only source of income for snwds is a state grant. physical infrastructure access a majority of neis are accessible to snwds, but with some limitations, such as a lack of escalators, as quoted below: ‘i would just love the schools to accommodate people with disabilities; i would say maybe lifts, because at first, i didn’t know how to walk up and down the stairs. in the first week, i used crutches, but as i’m saying […] it was difficult, it was difficult for me. but at the same time, i was […] the tutors were waiting for me at the top, i need to go up … i need to have my bag, … because she’ll [educator] be […] waiting for me at the top’. (participant 3, rachael, female, 23 years old) in neis where escalators were present, access to certain lectures not on the ground floor was denied, for example lectures held in the skills laboratory. even though lecturers were willing to change the venue to accommodate snwds, they were unable to move the skills laboratory because of availability of specialised equipment, resulting in snwds missing those lectures, as well as clinical time in the skills laboratory. this is a revealing and critical finding, as it demonstrates the disjointed nature of disability support in programmes that go outside of the regular classroom lecture setting. this finding is key and is in violation of the equity of access practices. barriers to accessing nursing programmes a small minority of private neis (23.8%, n = 5) revealed a lack of funds to be a barrier for accommodating and training snwds, especially with regard to purchasing modified equipment. the lack of funds is often given as a reason for not providing accommodation but, in reality, it is an unacceptable excuse, since the federal guiding documents such as the disability policy guidelines (2010) require equity of access, and never said ‘if affordable for the institution’ (constitution of sa 1996). physical environmental barriers, such as inaccessible buildings, social barriers such as stigma, stereotyping and attitudes were also a barrier in a small minority of neis (19%, n = 4). other barriers included lack of knowledge in reasonable accommodation found in only 9.5% (n = 2) of neis; lack of collaboration between college staff and hospital staff (19%, n = 4) and lack of skills/availability of educators to manage snwds (19%, n = 4). in addition, students themselves reported the course as being stressful, and sought assistance and counselling from lecturers. discussion and findings socio-demographic findings the majority of the principals were female, as seen in studies by christensen (2017), which found nursing to be a female-dominated profession. the ages of principals of the neis ranged between 31 and 65 years, with a majority of the principals being above the age of 50 years (81%, n = 17). this could be consistent with nursing seen an aging population, or it could also mean that posts such as these are reserved for the more experienced and skilled professionals (phillips & miltner 2015; vance 2011). the global increase in chronic conditions associated with disabilities coupled with an aging nursing workforce increases the risk for disabilities amongst nurses as well (world health organization 2011). current recruitment practices of student nurses with disabilities at nursing education institutions the common thread that emerged from all participants was that gaining access to the nurse programmes was not difficult. the different neis have a common procedure used to recruit all students, including snwds, which includes completing an application form and attaching a curriculum vitae. the study’s findings suggest that the majority of neis lacked internal policy guidelines for recruiting and integrating snwds; however, alternate sources were used as a point of reference. while the majority of the principals of the neis are directly involved in recruiting snwds, when decisions need to be made regarding a student’s fitness to undertake the nursing programme, different key stakeholders from the multidisciplinary team are consulted. the findings of the survey indicate that a large majority of students were either not disabled or did not disclose their disability. it is interesting to note that while one nei indicated ‘not applicable’ on the survey questionnaire, during the individual interview with the snwds, this participant revealed having completed the enrolled nurse programme with the nei, suggesting a disjuncture between the findings. this study further suggests that snwds were afraid to disclose their disability, for fear of discrimination, and hence being excluded from the course, which concurs with the findings of a study by ryan (2011), which found that acquiring a place in the bachelor of nursing programme is one of the major hurdles for students with disabilities. it is important to note that even though the neis requested a declaration of health and/or disability at periodic intervals during the students, training, none of the neis requested a physical examination during the recruitment process. the majority of the students had hidden disabilities, which made it easier for the snwds to hide their disabilities, until they were accepted into the nurse training programme, and only disclosed their disability once they secured a place in the programme. in some instances, the lecturers only became aware of the disability when meeting the students, usually in class or during clinical accompaniment, which resonates with findings from aaberg (2010). other students went through their entire course of training without ever disclosing their disability. this study’s findings concur with previous findings of mosia and phasha (2017) that snwds lack support services and assistance is largely absent in the majority of the private neis. other findings suggest that there is a lack of knowledge and experience to support snwds (aaberg 2010). a huge contributory factor to this could be the absence of policy guidelines to guide the access and integration of snwds in neis, which results in the provision of support being situational rather than systemic (mosia & phasha 2017). it is important for nursing departments to develop support systems in collaboration with disability units, disability support organisations and professional nursing organisations, which can help identify what skills are essential as is, and what skills can be accommodated or adjusted to address access needs. relying solely on the disability unit support, usually designed for classroom-based learning, may not suffice (coriale, larson & robertson 2012). previous research findings exploring the experiences of registered nurses while they were in nursing programmes revealed that accommodations approved by the disability unit were sometimes not carried out by the nursing department, as in the case of the student with a urinary problem who was not allowed to go to the toilet every 3 hours as required (neal-boylan & miller 2017). the neis indicated a lack of funds to purchase specialised equipment or to recruit additional staff members, which confirmed the findings of a study by emong and eron (2016) that private hearing impaired students lacked funds for enlisting the help of an interpreter and usually shared the interpreter of a student funded by the government. in addition, students with disabilities in this study lacked funds for travelling to clinical sites, as a state grant was sometimes the only source of income. on a more positive note, snwds depend heavily on other colleagues for assistance, such as note taking (mosia & phasha 2017). similar findings by neal-boylan and miller (2017) describe how colleagues were committed to assisting one another, as students felt they ‘were in this together’. snwds also depend on their family members for support and encouragement, which motivates them to persevere in the nursing programmes. current practices of access to nursing education institutions training programmes the findings of this study evidence adequate access to the physical environment of neis, such as well-designed buildings with ramps and escalators; however, the escalator was often not in good working order. this prevented snwds from accessing lectures such as those in the skills laboratory located above the ground floor. even though lecturers were willing to relocate the venue for normal classroom lectures, specialised rooms such as the skills laboratory could not be moved, because of specialised equipment and resources. the lecture method is the most common teaching strategy used, which requires face-to-face contact. this was a challenge, as the lecturer sometimes walked around the class, which made it difficult for hearing impaired students to lip read. hearing impaired students, in addition, use facial expressions and facial cues when interpreting messages, and this proved difficult when educators spoke and wrote on the board at the same time, which coincides with the findings of emong and eron (2016). in addition, lecturers sometimes do not write notes on the board, nor do they have a powerpoint presentation, which made it difficult for snwds to follow the lecture. further to this, visually impaired students were sometimes unable to read notes on the board and have to rely on other means of assistance, for example getting their colleagues and friends to help (mosia & phasha 2017). some lecturers provide notes, but these were also difficult to read, and can be equated to the lack of resources, such as large print books, cited by mosia and phasha (2017) in their study, which examined students with disabilities’ access to higher education institutions in lesotho. reasonable accommodation reasonable accommodation provided to snwds includes modifying equipment, workstations, test times, providing additional support, training or retraining and counselling. modified test times varied at different neis, between 15 and 30 min extra per test and/or examination, because of the absence of policy guidelines to guide neis when recruiting snwds. emong and eron (2016), in a study in uganda exploring disability inclusion in higher education, reveal similar findings, namely the consequence of a lack of policy to support students with disabilities, meaning support for students with disabilities was situational rather than systemic. the university as a body of higher education has made considerable efforts to include and accommodate snwds, as compared to the other private neis, mostly nursing colleges. this could be because of the fact that the university also has a disability unit attached to readily assist with special needs of students with disabilities. barriers to accessing nursing programmes the financial implications of recruiting snwds are a challenge for neis, which do not have adequate funds to purchase any new and specialised equipment/resources, such as employing a sign language interpreter for hearing impaired students. hearing impaired students also experienced challenges when lecturers spoke in a soft tone or when lecturers walked around the class while lecturing. hearing impaired students expressed concern that they needed to see the lecturer to be able to lip read. they added that facial expression also played a role during communication. the researcher proposed these aspects be included in the guidelines for nurse educators to have a source of reference to guide their practice. the only source of income for students with mobility impairment is a minimal state grant, which makes it difficult for them to travel to the clinical site daily using public transport to ensure their clinical hours are met. mobility impaired students also experienced difficulty accessing lecture venues. barriers to the lecturers for vision impaired students were the lack of notes and/or powerpoint presentations from some lecturers. the rational explanation for the lack of support and provision of reasonable accommodations is the lack of disclosure by students themselves. the lack of guidelines further compounds these challenges as nurse educators lack a reference document to ensure support and reasonable accommodation is provided to all students in a fair and consistent manner preventing any form of discrimination. hence, the researcher proposes including a standardised procedure for recruitment and selection of all learners including snwds, which should encourage voluntary disclosure within an enabling and supportive environment by a multidisciplinary disability committee. in addition, students themselves reported the course as being stressful, and sought assistance and counselling from lecturers. the author concludes that determining the physical skills essential for the nursing profession and identifying skills that are able to apply accommodation without harming the integrity of professional competence may help reduce barriers. limitations of the study these study findings indicate that snwds still choose to hide their disability because of disclosure. the number of students identified in this study is limited to those students who disclosed their disability, and hence the study cannot represent the total population of snwds in private neis. in addition, this study was conducted in private neis and one public university only, and for that reason, it should be interpreted with caution and not be generalised to all neis in south africa. conclusion and recommendations recruitment practices, teaching and learning practices, and the nursing curricula can all influence the recruitment of snwds in neis (fotim 2011). the recruitment practices for all students were the same, with no specific process for snwds suggesting no discrimination in recruiting of snwds. when a decision was needed to be made regarding a student’s fitness to practise, members of the multidisciplinary team were contacted, but principals of the nei were largely responsible, suggesting a lack of coordination between the multidisciplinary disability support team and the nei principals as a key finding. recruiting snwds was easy, but access to lecture rooms, curriculum, support, reasonable accommodation and clinical sites was limited. while every effort was made to include snwds in nei programmes, accommodating snwds was situational rather than systemic, and in the absence of clear policy guidelines, some lecturers were more than supportive, while others were not. snwds preferred to hide their disabilities until they secured a space in the programme, and only disclosed their disability when reasonable accommodation was required, while some students went through the entire programme without informing the nei about their disability. it is significant to note that countries like the united states of america have federal laws such as the americans with disabilities act 1990, amended in 2008, and section 504 of the rehabilitation act of 1973 that protect people in higher education from any form of discrimination and require higher education accommodation as a civil right (americans disability act 1990). the author of this article, therefore, suggests that the absence of policy guidelines for integrating snwds in nursing programmes is a key contributory factor for not meeting the 2% target of employing people with disabilities in south africa. the researcher makes the following recommendations: further collaborative planning of the nei principals and disability support staff is needed to develop the mutually agreed upon support system to use. barriers in nurse training environments need to be identified and the ‘essential functions’ of nursing programmes need to be decided on by key stakeholders involved in nursing education. continuing professional development of educators on the integration of snwds and inclusive teaching practices in the classroom, as well as reasonable accommodation in the practice-based setting (lombardi, murray & dallas 2013) are some of the recommendations. the development of policy guidelines to ensure consistency and prevent unfair discrimination on snwds ought to be undertaken (mutanga 2017). marks and mcculloh (2016) reveal that best practices for nursing in the 21st century should include accommodations to improve clinical experience using technology to transform nursing education, research and practice. acknowledgements the authors thank the national research foundation for financially supporting this study and santrust for the many workshops and support they continue to provide. competing interests the authors declare they have no financial or personal relationships that 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settings: attitudes, concerns, and experiences of nurse leaders’, journal of professional nursing 26, 182–187. https://doi.org/10.1016/j.profnurs.2009.12.001 world health organization, 2011, world health report on disability, viewed 13 january 2015, from http://www.who.int/disabilities/world_report/2011/report.pdf wray, j., gibson, h. & aspland, j., 2007, research into assessments and decisions relating to ‘fitness’ in training, qualifying and working within teaching, nursing and social work, university of hull for the disability rights commission, viewed 13 december 2014, from http://www.maintainingstandards.org yin, r.k., 2014, case study research: design and methods, 5th edn., sage, thousand oaks, ca. abstract introduction disability and food security vulnerability to food insecurity research methods and design validity and reliability results and discussion ethical considerations limitations of the study recommendations conclusion acknowledgements references about the author(s) candice a. quarmby disciplines of audiology & speech-language therapy, university of kwazulu-natal, south africa mershen pillay discipline of speech-language pathology, university of kwazulu-natal, south africa citation quarmby, c. & pillay, m., 2018, ‘the intersection of disability and food security: perspectives of health and humanitarian aid workers’, african journal of disability 7(0), a322. https://doi.org/10.4102/ajod.v7i0.322 original research the intersection of disability and food security: perspectives of health and humanitarian aid workers candice a. quarmby, mershen pillay received: 22 nov. 2016; accepted: 03 nov. 2017; published: 30 apr. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: most people with disabilities the world over can be found in the majority (or ‘economically developing’) world. this is also where most of the world’s hungry and malnourished are found. we argue that the intersectionality between disability and nutrition may best be understood through a food security framework, and we position all people living with disability, including those experiencing feeding and swallowing disabilities, as at risk for food insecurity, especially those living in humanitarian emergency contexts. objectives: this study aimed to explore and describe the knowledge and experience of humanitarian aid workers (haws) and health care professionals (hcps) in food assistance contexts with regard to the nutrition and food security of people living with disabilities. method: in this exploratory, descriptive study, 16 participants with experience in sub-saharan africa and southern asia participated in an online survey. three survey participants with extensive experience were also interviewed. data analysis involved descriptive statistics and thematic content analysis. results: results revealed that participants had generally low levels of exposure to and experience with disability, including swallowing and feeding disorders. conclusions: reduced knowledge of haws and hcps regarding disability and the lack of professionals such as speech–language therapists, who manage disability-specific issues such as feeding and swallowing disorders, may affect the food security of people living with disabilities in food assistance contexts. introduction eighty per cent of the one billion people living with disability the world over can be found in majority (or lowand middle-income) world regions such as sub-saharan africa (world health organization & world bank 2011). similarly, the majority of the 794.6 million people worldwide who are estimated to be undernourished also live in these areas (food and agriculture organization, world food programme & international fund for agricultural development 2015). therefore, it is a truism that people living with disabilities in vulnerable contexts may be predisposed to hunger and malnutrition. however, there is currently a poor understanding of the intersection of disability and malnutrition (groce et al. 2013). we believe that this connection may best be positioned as a food security concern, as in the case of people with disabilities, food security may be jeopardised by a range of issues from reduced mobility to the presence of feeding or swallowing disorders (dysphagia). furthermore, we argue that the context in which disability-related issues may result in increased vulnerability to food insecurity is the same context in which vulnerability to food insecurity may be generally high and that individuals such as health care professionals (hcps) and humanitarian aid workers (haws) who manage nutrition in these contexts (filmer 2008) may have unique and valuable insight into this intersection. disability and food security food is a fundamental human right (united nations 1948). however, despite that there has been sufficient food to feed every person in the world for decades (simon 2012), approximately one in every nine people worldwide has inadequate food to support a healthy, active life (fao, wfp & ifad 2014). food security is defined as the circumstance in which all people, at all times, have physical, social and economic access to sufficient, safe and nutritious food that meets their dietary needs and food preferences for an active and healthy life. (fao et al. 2015:53) the four dimensions of food security include food availability, access, utilisation and sustainability (fao et al. 2015; maxwell & smith 1992; webb & rogers 2003). currently, the dimension of access, which is the main focus of this article, is accepted globally to refer to physical, social and financial access to food (fao et al. 2015). as can be seen from the fictional vignette below, which is rooted in the realities of internally displaced persons (idp) camps and conflict zones (international organization for migration 2014), these access classifications do not fully encompass the range of additional access issues that people living with disabilities encounter on a daily basis, especially in resource-poor regions such as sub-saharan africa. nwanneka is 6 years old and she and her family have lived in yobe, a state in northern nigeria, for 1 year. they form part of a large group of idp who fled their homes in gujba because of violence at the hands of the boko haram insurgency. nwanneka’s mother and five siblings collect food every day, but as nwanneka cannot walk to the distribution site, nor carry the food home because of her severe spastic cerebral palsy, she relies on her family to collect her ration while she is left at home. although it has never been diagnosed, nwanneka presents with dysphagia, a swallowing disorder. this prevents her from efficiently and safely swallowing food and liquid – often leading to chest infections. in addition, she is unable to communicate verbally. nwanneka cannot move her hand to her mouth, so her mother feeds her while she lies, contracted, on the floor of their hut in the idp camp. feeding nwanneka is a difficult and time-consuming task for her mother. she coughs when she drinks water and her chest always sounds like a rattle. nwanneka is generally fed only small amounts of food as, unlike her siblings who speak, she never complains of hunger. anyway, she can only consume small amounts of food or liquid as most of it spills from her mouth during feeding. konje and ladipo (2000), kerac et al. (2014) and wu et al. (2010) have reported malnutrition as a cause of disability. however, few researchers have explored alternative relationships between disability and nutrition such as the intersectionality between disability and feeding and swallowing. feeding can be conceptualised as being reliant on physical, behavioural or cognitive access to food and liquid such as self-feeding skills. it also involves physiological access to food and liquid through swallowing. the ability to feed is therefore dependent on a number of different capabilities and functions, all of which may be impaired in different types of disabilities (arvedson 2008; cox et al. 2007). we argue that like other food access concerns such as reduced mobility or communication disorders resulting in reduced ability to request food, feeding and swallowing are significant when considering disability and nutrition. however, like other disability-specific access concerns, these issues have not yet been adequately linked. thus, it is unsurprising that there was negligible reference in the world report on disability to people experiencing difficulties eating and drinking because of head injuries, strokes, developmental disabilities and suchlike (pillay 2014; who & world bank 2011). feeding difficulties can result from a large range of major motor and cognitive disabilities (schwarz 2003), which can in turn lead to reduced food security. for example, 99% of individuals with cerebral palsy present with dysphagia (calis et al. 2008), and more than 90% of individuals with motor neurone disease present with dysphagia (hartelius & svensson 1994). specific feeding and swallowing disorders may include symptoms such as food refusal, overeating or aspiration (food or fluid entering the airways or lungs) as may be the case for people with stroke (martino et al. 2005) or traumatic brain injury (castano & capdevila 2010; terre & mearin 2007). furthermore, symptoms such as gastroesophageal reflux, dysphagia, prolonged feeding time and increased feeding-related caregiver stress have been identified in the cerebral palsy population (adams et al. 2012; schwarz 2003). people with visual impairment have been found to have difficulty shopping and preparing food (muurinen et al. 2014) and may consume a diet lacking in variety as a result of inaccessibility of materials and environments (bilyk et al. 2009). elderly people with physical disabilities limiting mobility may not be able to access shops to buy food and have difficulties preparing food independently (wylie, copeman & kirk 1999). these are just a few examples highlighting issues arising from both motor and sensory impairments which may limit the ability of a person living with a disability to access food and therefore to be food secure. people living with disabilities in impoverished or humanitarian emergency contexts may face even greater barriers to food access considering that disability-specific factors may be compounded further by environmental barriers in these vulnerable, resource-poor environments (filmer 2008). vulnerability to food insecurity in the context of food insecurity, vulnerability is defined as the risk of future loss faced by an individual or a group as well as their incapacity to ensure adequate livelihood and food security over time (woller et al. 2011). vulnerability may be precipitated by a range of circumstances and is both widespread and complex (fao et al. 2015). vulnerability is also increased in resource-poor contexts, irrespective of region or the economic status of the general population (coleman-jensen, nord & singh 2013; tarasuk, mitchell & dachner 2014). as risks to food security differ depending on the nature of vulnerability, so too does risk management depending on the specific risks. an example of a risk management strategy is food assistance. for approximately the last 50 years, food assistance has been a key strategy employed to deal with food insecurity in impoverished, vulnerable contexts (simon 2012). food assistance has a multitude of definitions, but for the purpose of this article is defined as the provision of food or cash for food-based purposes (clay 2010). in this study, food assistance is used to highlight the circumstances of people living with disabilities and explore their possible risks to food security, even (and especially) within the context of risk management. the framework in figure 1 (lovendal & knowles 2006), which was used for this study, positions food security within a context of vulnerability, a common context for people living with disabilities. the framework highlights the effect of risks and risk management of vulnerable individuals or groups on the access dimensions of food security, which in turn affects nutritional status. figure 1: a framework for access to food in vulnerable contexts. research methods and design the design for this study was exploratory and descriptive in order to obtain insight, rather than focus on causal or contributory factors as in explanatory research (creswell 2014). a mixed methods design was used, with a focus on qualitative data supplemented with quantitative data to increase the comprehensiveness of the study and to aid in the interpretation of data (morse & niehaus 2016). the study was conducted in four phases. phase one included development of the research tools as well as pilot testing of the survey in order to improve the construction of the instrument (creswell 2014). phase two consisted of an online survey followed by three semi-structured interviews. phases three and four involved data analysis and representation, respectively. recruiting participants via non-government organisation (ngo) gatekeepers was difficult. once a gatekeeper had been established, despite frequent recruitment attempts in 14 different countries, limited participant responses were gained across the targeted study locations. over the course of over 4 months, 16 haws and hcps agreed to participate in the survey – all of whom had field experience in sub-saharan africa or southern asia and had worked with people living with disabilities (figure 2). figure 2: summary of study results. the electronic questionnaire, an instrument developed specifically for this study and disseminated via survey monkey®, focused on (1) knowledge and experience of disability, (2) knowledge of the nutritional status of people living with disabilities and (3) knowledge of the food security status of people living with disabilities. it consisted of 17 closed-ended and 2 open-ended questions. three survey participants, who were given the pseudonyms jeremy, edward and mary, were then selected for in-depth interviews given their field experience (figure 2). these three participants held managerial or leadership roles within their respective country organisations. furthermore, they had more than 5–10 years of fieldwork experience in sub-saharan africa and southern asia. thus, it was anticipated that these field experts would be able to provide insight into the circumstances of people living with disabilities who may be food insecure. survey results were extracted directly from survey monkey® for analysis by a statistician using the statistical package for the social sciences (spss). descriptive statistics were utilised (de vaus 2014). open-ended survey responses as well as interview data were analysed manually using thematic analysis (miles et al. 2014). the researcher coded each data chunk, a colleague assisted with double-blinded coding of interview excerpts, and both sets of codes were compared for inter-coder agreement to improve dependability (miles et al. 2014). codes were reviewed and clustered into patterns, which depicted emergent themes in the data (creswell 2014). the researcher then reviewed the themes, condensing the data into a cognitive, visual map depicting major themes and connecting inter-related themes. additionally, certain codes and themes arising from the interviews were subjected to quantitative transformation, and the qualitative data were converted into quantitative data and subjected to frequency counts (sandelowski 2000). validity and reliability as this research study was novel, the method and instruments were developed specifically for this study. the researchers attempted throughout the research process to assess and ensure data quality. researchers ensured representativeness of findings by recruiting representative participants who, by nature of their work and locations, would provide relevant information regarding the concepts explored. to achieve construct validity, the research instruments were based on the specific aims and objectives of the study as well as the core concepts identified as relevant (creswell 2014), which included dimensions of food security relating to disability and nutrition. these core concepts also guided data analysis. construct validity was impacted initially by a greater focus on swallowing than on both swallowing and feeding. however, the interview schedule was revised during the research process (miles et al. 2014) in order to include feeding as a concept and therefore strengthen validity. a pilot study was used to collect data regarding the clarity of the wording of the questions in the questionnaire in order to improve reliability of the final instrument (de vaus 2014). furthermore, inter-coder agreement (creswell 2014) was observed when a second reviewer coded a portion of the qualitative data and minimal discrepancy was observed. confirmability and trustworthiness were ensured through triangulation of both data sources and research methods (miles et al. 2014). data sources included participants of different ages and gender with different roles. hcps and haws were distributed over the wide range of countries in the two different study locations: sub-saharan africa and southern asia. furthermore, the mixed methodology involved collection of data via survey with openand closed-ended questions as well as interviews. data analysis techniques such as statistical analysis as well as thematic analysis including triangulation strategies were also used. in this study, triangulation was used to develop in-depth, rich perspectives on disability, nutrition and food security from multiple angles. results and discussion the four major findings of the study described and discussed subsequently included knowledge of disability, knowledge of swallowing and feeding disorders, disability inclusion and caregiver involvement in the nutrition and food security of people living with disabilities. knowledge and experience of disability the study results (tables 1 and 2) indicated that the participants had reduced knowledge and awareness of disability – both in general and for specific types of disabilities. this suggests that people living with disabilities may not be adequately managed. however, findings revealed that people with physical disabilities appear more likely to be managed than those with other types of disabilities. physical disabilities were encountered often or always by 12 of the 16 survey respondents. nine of the respondents indicated that they encountered visual disability often or always, while eight respondents reported that they encountered communication and hearing disabilities always or often in their fieldwork. seven of the respondents indicated that they encountered intellectual and emotional disabilities often or always. interview results revealed that all three interviewees, who had considerable field experience, had difficultly recalling specific experiences with people living with disabilities, and mary indicated that only 11 of the 3500 registered children in her programme had a disability, further suggesting low exposure to disability. considering that people with disabilities are at higher risk of food insecurity than people without disabilities (huang, guo & kim 2009; coleman-jensen et al. 2013) and that the largest proportion of people with disability worldwide can be found in areas such as the study locations (who & world bank 2011), these findings are concerning. although the context of food aid provision has not been explored, similar results were found in an analysis of media coverage of food security and people with disabilities (wolbring & mackay 2014). this study found that the newspapers analysed largely excluded people with disabilities from the food security debate. table 1: summary of participant responses. physical disability was the most frequently encountered type of disability, a finding that may both promote and arise from the idea that a major aspect of food access is physical access. this may be the case as physical disabilities may be more visually obvious than with other types of disability. all three interviewees described experiences or scenarios with people with physical disabilities, and only mary described another type of disability. thirteen of the 16 respondents indicated that in their experience, people living with disabilities had reduced access to food. ten of the respondents indicated that this was because of reduced physical mobility and reduced finances. these responses appear to reflect that people living with disabilities experience difficulties with access to food, as per fao’s definition (fao et al. 2015). however, other relevant issues people living with disabilities encounter remain unacknowledged. for example, people living with disabilities may have difficulty accessing information about planned food distribution because of a communication disorder or visual impairment (muurinen et al. 2014). this may have an impact on the ability of a person living with a disability to access food. this was highlighted by edward, another interviewee, both in the interview and in the survey when he reported ‘we sometimes forget that there are those who … cannot hear so as a result they miss important information (pertaining to food distribution)’ (haw 8, male, from eastern africa). a further six survey respondents highlighted access to information as an issue for people living with disabilities. we believe that this failure to acknowledge a range of disability-related issues highlights a poor understanding of disability amongst hcps and haws in food assistance contexts and in turn may place people living with disabilities at a greater risk of food insecurity. furthermore, considering the varying and complex nature of disabilities, it seems unlikely that without exposure to different types of disabilities, hcps and haws would be able to adequately manage their specific needs. it was therefore understandable when only four and six of the participants felt they often or always had adequate knowledge and skill (table 1), respectively, to manage the nutrition, feeding and swallowing needs of people living with disabilities. these results imply that people living with disabilities may be under-served in food assistance contexts. fifteen per cent of the world’s adult population are estimated to present with a disability, and 5.7% of children are expected to have moderate to severe or severe disabilities (who & world bank 2011). however, only 0.3% of the 3500 children in mary’s example above were served; this indicates that a portion of children with disabilities was likely overlooked. this highlights a lack of knowledge of and exposure to disabilities amongst individuals who, by nature of their location and work, should encounter people living with disabilities more regularly than those in other contexts (who & world bank 2011). a rigorous narrative literature review using systematic review principles, preferred reporting items for systematic reviews and meta-analyses (prisma) guidelines and double blinding (liberati et al. 2009) was conducted for the purpose of this study. the findings supported the idea that people living with disabilities may not be adequately catered for or acknowledged in food assistance contexts (duttine, cherow & farkas 2012; quarmby 2016). an in-depth search of academic and grey literature published between 1985 and april 2015 aimed to identify if food assistance providers managed people living with disabilities living in vulnerable contexts. of 1547 records identified, only 19 records discussed food assistance provision with overt reference to people living with disabilities, and only 2 records made explicit connections between disability and food security or nutrition in their conclusions (duttine et al. 2012; klesges et al. 2001), with 1 article indicating a scarcity of programmes addressing the nutritional needs of children with disabilities (duttine et al. 2012). both the scarcity of literature regarding disability and food security or nutrition and the findings of duttine et al. (2012) corroborate the survey and interview findings that people living with disabilities may not be adequately catered for within food assistance contexts. this suspected oversight of people living with disabilities at organisational levels is perhaps unsurprising considering that in the world report on disability, reference to access to food for people living with disabilities is negligible, and only three indirect references to feeding and swallowing issues can be found (who & world bank 2011). knowledge and experience of swallowing and feeding disorders knowledge and experience of swallowing and feeding disorders amongst participants was low. only two survey respondents reported that they often encountered people with swallowing disorders (table 1). the remaining respondents never encountered swallowing disorders, or were unsure, and only one respondent highlighted this as a potential cause of reduced access to food for people living with disabilities. all three interviewees indicated that they had no experience with or knowledge of feeding or swallowing disorders, although mary later recounted a story of a child with autism who had feeding difficulties. the prevalence of swallowing disorders has been estimated to be 16% of the general population in a high-income, urban context (eslick & talley 2008) and is therefore expected to be even higher in the majority world. as feeding can be affected in a myriad of ways when a person presents with a disability (adams et al. 2012; bilyk et al. 2009; castano & capdevila 2010; schwarz 2003), we consider reduced hcp and haw knowledge and experience of feeding and swallowing disorders to be a risk factor that may contribute to reduced food access and therefore an increased risk of food insecurity for people living with disabilities. in terms of the conceptual framework (figure 1), reduced hcp and haw knowledge and experience of disability and feeding issues is likely to affect the quality and sufficiency of food assistance efforts. irrespective of the availability of food or economic access issues (both of which may be accounted for in the context of food aid provision) or of the ability of an individual with disability to physically or socially access food assistance, which is also likely to be impaired (poulsen et al. 2015), further sensory, cognitive and physical issues may impair access to food assistance through feeding. feeding issues may, in turn, affect nutritional status. as such, the results indicating not only poor knowledge of feeding or swallowing disorders but also poor awareness of and exposure to all types of disabilities, especially sensory, cognitive and communication impairments, are especially concerning. disability inclusion it became evident during all three interviews that inclusion criteria for distribution programmes were governed by both internal and external policies. it also appeared that further independent decision-making by haws may have facilitated the inclusion of people living with disabilities as haws included those people observed to have disabilities at distribution points in the distribution efforts. edward and mary indicated that disability was included in the vulnerability criteria and people living with disabilities were therefore included in food distribution programmes. however, jeremy highlighted informal identification and inclusion of people living with disabilities: ‘you notice there is someone that is living with a disability and you just call him’ (haw 7, male, from southern africa). edward indicated that people living with disabilities might be excluded from food distribution programmes and highlighted that this may be because of the insufficient nature of assessment of people living with disabilities. although community involvement in the development of inclusion criteria and food aid programmes was highlighted by all three interviewees, edward reported that programmes may not fully cater for people living with disabilities as the perspectives of people living with disabilities are not considered when planning such programmes: ‘when you are doing analysis of the information you will not be having the views of the disabled people’ (haw 8, male, from eastern africa). furthermore, neither jeremy nor mary discussed engaging people living with disabilities in programme development or execution. despite reported efforts to include people living with disabilities, again the general lack of knowledge and exposure evidenced by the study participants, when considered along with global disability statistics (who & world bank 2011), suggests that people living with disabilities may not be sufficiently included in food aid programmes and may therefore be at risk of reduced access to food. furthermore, disability inclusion may be impacted by disability management at a national level. at no point did any of the interviewees discuss state responsibility for the nutritional care or well-being of citizens with disabilities. in fact, this issue arose only once during the research process, when during the survey hcp1 indicated that a barrier to food security for people living with disabilities was that there was ‘no national program for food security for people with disability’ (walter, male, from western africa). the universal declaration of human rights and the convention for the rights of persons with disabilities, both of which highlight the right to food, were signed and ratified by 185 and 160 member states, respectively, with good representation from sub-saharan africa and southern asia alike (un 1948, 2015c). similarly, almost 200 member states committed to halving extreme poverty and hunger through the millennium development goals (mdgs) (un 2015a) and, more recently, to eliminating poverty and hunger by 2030 through the sustainable development goals (sdgs) (un 2015b). these conventions and goals highlight global and national commitment to human rights, disability rights and food security. however, formal acknowledgement of rights by a state does not necessarily translate into policies or practices that promote these rights (fao 2006) as can be seen in the lack of reports of government assistance for food security or people living with disabilities in the study locations. despite mdg commitments, sub-saharan africa as a region showed significantly less progress with regard to poverty and hunger reduction than any other regions and was the only region that did not meet poverty and hunger goals (un 2015c). reduced government involvement may lend itself to the self-regulation of humanitarian aid organisations (lloyd 2005) that tend to adopt codes of ethics or accountability policies dictated by international organisations such as the world association of non-government organizations (wango). however, to our knowledge, these codes of ethical conduct or accountability do not account for people living with disabilities (the international federation of red cross, red crescent societies & the international committee of the red cross 1994; wango 2007). this can be seen in the data through the scarcity of formalised organisational policies ensuring the inclusion and management of people living with disabilities, as well as through the reports of humanitarian aid worker autonomy to ensure disability inclusion. caregiver responsibility the results indicate a possible over-burdening of caregivers in terms of responsibility for the nutrition of people living with disabilities. four participants indicated that the responsibility of assisting people living with disabilities to acquire food lay with the individual’s family (figure 2), often a mother or grandmother, or community members, as was seen in survey responses from edward and haw2. furthermore, mary indicated that she believed that poor caregiver knowledge could cause ‘suffering’ for a child with a disability and suggested that it was the responsibility of the parent to provide food for their child with a disability, ‘so if the parents they know about that type of food they can normally provide them (children with disabilities) with that type of food and then the children become healthy.’ (haw 9, female, from southern asia) this quote highlights the expectations that caregivers are responsible for equipping themselves with knowledge and resources to adequately care for the person living with a disability. once more, these data highlighted the issue of reduced food security through the mechanism of reduced food access, as not only does it appear that people living with disabilities are dependent on their caregivers for food, but these caregivers appear to bear the burden of disability and food insecurity where financial and time demands are great and resources are few. the placement of responsibility on caregivers, specifically those in resource-poor contexts, hardly appears fair, especially considering that poverty-related issues such as diseases of poverty perpetuate poverty and vulnerability for these caregivers. along with other disability-specific issues such as reduced income of persons living with disabilities as well as their carers (huang et al. 2009), the capacity of caregivers in these contexts to adequately manage the nutrition and food security of their family member with a disability is reduced. this was highlighted by mary who spoke of the lack of financial resources interfering with child care in that parents in her community needed to work and therefore did not have time, or energy, to adequately care for their children, ‘when her [child with a disability] mother back from her workand that time she was tired … she cook for her family and she became tired. and just in the nights she tried to feeding her child.’ (haw 9, female, from southern asia) there appears, therefore, to be a mismatch between the expectations placed on caregivers and their capacity to manage the burden of disability, especially in resource-poor contexts. in summary, the results suggested that haws and hcps may have reduced exposure to all types of disabilities, especially those that are not visually obvious, which suggests reduced capacity of these individuals to adequately identify and manage people living with disabilities in the context of food assistance. furthermore, it appears evident from the results that people living with disabilities may not be representatively included in food distribution efforts and that the responsibility for the nutrition and food security of people living with disabilities may be heavily skewed towards caregivers and family, those individuals who are likely in the least favourable position to take on such responsibility. ethical considerations the study was approved by the university of kwazulu-natal humanities and social sciences research ethics committee under the protocol reference number hss/0306/015m. limitations of the study representation of hcps in the interviews may have contributed to a more rounded picture of the knowledge and experience of both participant groups. furthermore, although feeding was addressed within the interviews, the results may have been richer with increased focus on feeding, rather than predominant focus on swallowing, in the online questionnaire, especially considering the significance of such impairments in the context of food security for people living with disabilities. despite these limitations, the study methodology and design included strategies to uphold trustworthiness and confirmability, and the study therefore provides rich and valuable insights into food security for people living with disability. recommendations organisational policy development across humanitarian aid organisations is recommended. policy reform to include haw and hcp training in disability and feeding is suggested. through heightened awareness and knowledge of disability, it is anticipated that identification and therefore inclusion of people living with disabilities will improve, thereby promoting access to the food distributed. furthermore, training in feeding may improve haw’s or hcp’s ability to manage the nutrition of people living with disability and train or counsel caregivers appropriately. although ngo resources may be scarce, it is recommended that these organisations prioritise the inclusion of hcps such as speech–language therapists, occupational therapists or physiotherapists, all of whom are trained to practically manage people living with physical, sensory and cognitive disabilities. furthermore, inclusion of people living with disabilities in programme planning is recommended to promote the identification and management of specific barriers to food security that may be encountered by people living with disabilities. globally, there is an urgent need to reconsider food access within our current understanding of food security. this is important to account for risks to food access experienced by people living with disabilities and to uphold their fundamental right to food. further research exploring the specific circumstances of people living with disabilities in resource-poor contexts, particularly with regard to feeding and swallowing, is recommended to fully understand and confirm the mechanisms that put this vulnerable group at risk of poor access to food and food insecurity. additionally, further exploration of these issues from the perspective of people with disability is essential in adding to the insights already gained from this study. conclusion these research findings suggest that people living with disabilities in resource-poor contexts, such as sub-saharan africa, may be at a greater risk of food insecurity because of reduced food access, specifically in the context of food assistance, where they may not be included or managed adequately. more than anything, these results suggest that disability, nutrition and food security are interconnected and that these issues may be affected at a spectrum of levels ranging from the household and organisation levels to government and international levels. however, despite this intersection, the current understanding of food security fails to acknowledge disability-specific access issues, such as feeding or swallowing disorders, further impairing access to food and therefore food security for this vulnerable group of people. acknowledgements the authors would like to thank the contacts at the world vision southern africa office as well as at the world vision country offices of lesotho, senegal, zambia, southern sudan, kenya, drc, bangladesh and sri lanka for their eagerness to engage in this research project and for their assistance in participant recruitment. finally, the authors would like to thank the participants for their time, effort and willingness to assist in bringing about positive change for people living with disabilities who are likely to be at risk of food insecurity. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions c.a.q. was the primary author and researcher. she developed the research design and instruments and was responsible for obtaining ethical approval, conducting the survey and interviews and analysing the results. m.p. was the co-author of this article. additionally, he provided the conceptual base for connecting food security, swallowing, disability and nutrition, and supervised c.a.q. throughout the research process. references adams, m.s., khan, n.z., begum, s.a., wirz, s.l., hesketh, t. & pring, t.r., 2012, ‘feeding difficulties in children with cerebral palsy: low-cost caregiver training in dhaka, bangladesh’, child: care, health and development 38(6), 878–888. https://doi.org/10.1111/j.1365-2214.2011.01327.x arvedson, j.c., 2008, ‘assessment of pediatric dysphagia and feeding disorders: clinical and instrumental approaches’, developmental disabilities research 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http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf wu, l., katz, j., mullany, l.c., haytmanek, e., khatry, s.k., darmstadt, g.l. et al., 2010, ‘association between nutritional status and positive childhood disability screening using the ten questions plus tool in sarlahi, nepa’, journal of health, population, and nutrition 28(6), 585. https://doi.org/10.3329/jhpn.v28i6.6607 wylie, c., copeman, j. & kirk, s.f.l., 1999, ‘health and social factors affecting the food choice and nutritional intake of elderly people with restricted mobility’, journal of human nutrition and dietetics 12(5), 375–380. https://doi.org/10.1046/j.1365-277x.1999.00177.x abstract introduction research methods results discussion limitations of the study conclusion acknowledgements references about the author(s) samantha j. ballington discipline of biokinetics, exercise and leisure sciences, university of kwazulu-natal, south africa rowena naidoo discipline of biokinetics, exercise and leisure sciences, university of kwazulu-natal, south africa citation ballington, s.j. & naidoo, r., 2018, ‘the carry-over effect of an aquatic-based intervention in children with cerebral palsy’, african journal of disability 7(0), a361. https://doi.org/10.4102/ajod.v7i0.361 original research the carry-over effect of an aquatic-based intervention in children with cerebral palsy samantha j. ballington, rowena naidoo received: 20 jan. 2017; accepted: 23 july 2018; published: 29 oct. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: cerebral palsy (cp) is the most common motor disability in childhood. children with cp are more likely to have lower levels of physical activity than their peers, which has negative implications for their health. however, aquatic exercise can be used to improve levels of fitness among children with cp. objective: to determine the carry-over effect of an aquatic-based programme (postural control and balance) on land (walking, running and jumping) in children with cp, post aquatic intervention. method: the study used a pretest-post-test, randomised group, cross-over design. children aged 8–12 years (n = 10) were divided into intervention (n = 5) and control (n = 5) groups. the intervention group participated in two 30-min sessions a week, while the control group continued with normal activities. preand post-intervention testing was conducted using gross motor function measurement. the 10-point programme of the halliwick concept was used. results: results demonstrated that the aquatic therapy had a significant effect on gross motor function scores. the aquatic programme-based group showed increased motor function following the intervention, compared to the control group (z = -2.803, p = 0.005). furthermore, the aquatic-based therapy improved the average score for gross motor function measurement, post-intervention. conclusion: together with conventional modes of therapy, aquatic-based programmes should be integrated and considered as an essential, ongoing mode of treatment for children with cp, in order to ensure long-term gross motor function improvements. introduction cerebral palsy (cp) is a collective term for non-progressive motor conditions that cause physical disability because of affected muscle tone (bax et al. 2005). cerebral palsy is commonly classified based on movement disorders. the word ‘cerebral’ refers to the cerebrum, which is the affected area of the brain, and ‘palsy’ indicates a movement disorder. levels of mobility in the community, at school and at home can be described applying the gross motor function classification system (gmfcs), specifically in children (galuppi et al. 1997). the gmfcs ranges from level i, representing high-functioning children who have the potential, or the ability, to walk without limitations; to level v, representing children with very limited mobility, requiring very high levels of mobility support (bartlett et al. 2008). cerebral palsy is the most common motor disability in young children. population-based studies worldwide have described the prevalence of cp ranging from approximately 1.5 to more than 4 per 1000 live births (cans 2000). about one in 323 children has been diagnosed with cp, according to estimates from the centre for disease control and prevention, autism and developmental disabilities monitoring network (arneson et al. 2009). in africa, cp rates have been found to be even higher, with an estimated prevalence of 2–10 cases per 1000 births (donald et al. 2014). however, there are limited studies regarding the prevalence of cp in developing countries. two south african studies (christianson et al. 2002; couper 2002) indicated high prevalence rates for cp of between 1% and 8%, respectively, but there is no recent data to date (couper 2002). the cp association of eastern cape, based in port elizabeth, estimates that one out of every 400 babies born each year presents with cp, totalling an estimate of 2200 children diagnosed with cp yearly in south africa (christianson et al. 2002). a major problem affecting the function and health of children with cp is inadequate physical activity. the development of secondary conditions related to cp, such as fatigue, osteoporosis and chronic pain, may also contribute to the lack of sufficient physical activity (brunstrom et al. 2007). furthermore, restrictions in posture and movement can restrict activity and are often accompanied by disturbances in sensation, sight-based perceptual problems, depth perception, communication ability and cognition (lepore 2011; leviton, paneth & rosenbaum 2007). children with cp, across the severity spectrum, are more likely to have diminished levels of physical activity than their peers; this increases their chance of developing other adverse health conditions such as obesity and cardiovascular disease (leviton et al. 2007). they may only be capable of limited movement, reducing their amount of natural day-to-day exercise. furthermore, children with cp take part less in active, physical play and playground activities. they spend more time sitting and take fewer steps per day than other children without disabilities (king, king & law 2006). these low levels of physical activity are indicative of low endurance and a lack of general physical condition (brunstrom et al. 2007). moreover, because of muscle weakness, poor joint alignment and contractures, children with cp are at risk of developing overuse syndromes and other chronic conditions (kelly & darah 2005). hence, early diagnosis and appropriate therapy are essential for the rehabilitation of children with cp (dimitrijević & jakubi 2005). cardiorespiratory endurance is an important element of physical fitness and has been identified as the most important fitness component linked with health and mortality (blimkie, malina & strong 2005). children with cp present with low cardiorespiratory endurance, which may be limited by their cardiovascular, respiratory and skeletal muscle systems (brunstrom et al. 2007). with growing evidence suggesting that children with cp have reduced levels of cardiorespiratory endurance compared with children of the same age group without cp, physical therapists have recognised improving aerobic fitness as an important rehabilitation objective (kelly & darah 2005). preliminary research suggests that aerobic exercise programmes may increase cardiorespiratory endurance and other physiological responses in children and young people with cp (berg 1970; speth, van baak & van den berg-emons 1998). although aerobic exercise has produced encouraging physiological outcomes in children with cp, the properties of activity and involvement components are unknown (brinks, fuler & rogers 2008). exercise as a form of therapy and rehabilitation is essential for children with cp, as it is used to improve muscle strength, flexibility, respiratory function and children’s gross motor function (keyes & lockette 1994). children and adolescents with cp have weak muscles; therefore, it is a reasonable assumption that these weak muscles can be strengthened via a resistance training protocol. however, a systematic review of randomised controlled trials has not shown resistance training to be significantly more effective than no intervention or placebo (scianni et al. 2009). this is further supported by a review conducted by verschuren et al. (2011), who also reported that there was limited evidence from land-based programmes that strength improvements correlate with improvements in activity, as the carry-over effect is generally low or absent. kelly and darah (2005) believed that by being in the water, children are motivated to move their bodies and feel the effect of movement on their body. therefore, aquatic exercise can be used to enhance the level of fitness among children with cp. the possible benefits of adaptive aquatic programmes include an improvement in cardiorespiratory endurance, strength, co-ordination and swimming skills (fragala-pinkham, haley & o’neil 2010). buoyancy is one of the physical properties of water which offers postural support and reduces loading on unstable joints, to allow children to move more independently in water than on land (kelly & darah 2005). unrestrained movement and the ability to activate muscles that have difficulty in overcoming gravitational restrictions are the principal reasons why swimming and any aquatic-related activities are appropriate for individuals with a wide range of physically disabling conditions (prins 2009). movements are completed more easily in aquatic-based exercise programmes than land-based exercise programmes. it is believed that modified aquatic-based exercise programmes transfer active exercises that are normally performed on land to the medium of water. furthermore, the aquatic-based exercise can produce a carry-over effect on land. for example, a person who is incapable of walking on land may be able to walk in water, thereby strengthening the muscles required for walking on land (lepore, gayle & stevens 2007), leading, in due course, to improved walking on land. as cp causes a permanent disorder of movement and posture (leviton et al. 2007), it is imperative for programmes to include a substantial number of muscle strength components to increase postural stability and prevent secondary musculoskeletal deficiencies. if muscle strength can be improved in water, it is anticipated that this may translate into improved movement on land and, in turn, better functional ability in daily living. however, the lack of aquatic-based activity programmes for this population, and the effectiveness of such interventions for children with cp, has not been well evaluated (verschuren et al. 2011), hence the need for further investigations. studies including aquatic-based programmes or activities as part of therapy with ambulatory children and adolescents with cp, classified with gross motor function at levels i, ii and iii, are few and are even more limited on children classified with gross motor function at levels iv and v (blohm 2011; currie & gorter 2011; dimitrijevic & jorgic 2012; franzen & tryniszewski 2013). furthermore, relatively low sample sizes, ranging from 1 to 16 participants, were used, with the majority of studies (currie & gorter 2011; franzen & tryniszewski 2013) recruiting < 7 participants or being implemented as single-subject case studies. personal and environmental barriers such as acceptance, fear, transportation, time and accessibility may play a role in low participation and study completion (viguers 2010). thus, further research on the carry-over effect from the aquatic environment to activity on land is required (verschuren et al. 2011). the aim of this study was to determine the carry-over effect of an aquatic-based programme (postural control and balance) to movement on land (walking, running and jumping) in children with cp, using preand post-intervention measurements. research methods research design the study used a pretest-post-test, randomised group, cross-over design. taking into consideration the population in this study, it is difficult to recruit a large sample. a cross-over design requires fewer participants in order to attain the same level of statistical significance or precision as a parallel design. therefore, the cross-over design was warranted as this design yields a more efficient comparison of treatments than a parallel design (chen et al. 2009). participants participants were recruited on a voluntary basis from a local school in the ethekwini area, kwazulu-natal, south africa. to participate in the study, children had to fulfil the following inclusion criteria: they must have been medically diagnosed with cp; have a gmfcs score of between i and iii; and would have no other medical conditions, such as seizures. the exclusion criteria were the following: a gmfcs score of more than iii and having other medical conditions that caution against water therapy. based on the inclusion and exclusion criteria, a sample of 10 children (2 males and 8 females) between the ages of 8 and 12 years, with a mean age of 11 ± 0.08 years, was selected to participate in the study. testing procedures and protocol parental consent and child assent were obtained on an individual basis. the study was approved by the biomedical research ethics committee of the university of kwazulu-natal. participation was voluntary and participants could withdraw from the study at any time. children were randomly divided into an intervention (n = 5) and a control (n = 5) group. preand post-intervention gross motor function testing was conducted individually at the school during school hours on all the children. the gross motor function measurement (gmfm) testing protocol was used. the intervention group participated in two aquatic sessions a week for 8 weeks, so a total of 16 sessions. each session lasted 30 min. the control group did not participate in any aquatic-based activities during this part of the study. at the end of the 8 weeks, post-intervention tests were conducted prior to the wash-out period of 1 month (school vacation). thereafter, there was a cross-over between the groups, with the control group now participating in the same aquatic-based activities that the intervention group had performed for a period of 8 weeks, while the previous intervention group now continued with normal activities. the aquatic-based intervention the 10-point programme of the halliwick concept was used. this included water adjustment skills, longitudinal rotations, sagittal rotations and swimming skills. each session consisted of a one-on-one session with a qualified biokineticist (a specialised exercise therapist who functions in professional alliance with health and medicine and is recognised by, and registered with, the health professions council of south africa (hpcsa 2016)). the 30-min session comprised a 5-min warm up, followed by a 20-min session based on the halliwick concept and ended with a 5-min cool down. the warm-up session for the first session was water orientation, allowing the children to get used to the water, and thereafter, as a warm up, a quick recap of the previous session was conducted, before moving onto the next point in the programme. the cool-down session consisted of free play. this included splashing and jumping in the water as well as diving down under the water. the halliwick concept is a detailed swimming programme-based on the scientific principles of body mechanics and the properties of water intended to educate individuals with special needs to be water safe and to move independently in the water as much as possible (lambeck & stanat 2001a). the programme consists of 10 specific progressive stages that are achieved without the use of floatation devices (lambeck & stanat 2001b). these 10 points have been ordered to provide a universal structure, although there is a strong overlap between the points (iha 2010). furthermore, through the 10 points, a process of development through balance control, mental adjustment and movement leads to individual independence in the water. these three concepts are the necessary mechanisms of motor learning (lambeck & stanat 2001a; 2001b). the 10-point programme of the halliwick concept the 10-point programme consists of the following points (iha 2010): point 1: mental adjustment is the process which allows the swimmer to be in the water with sufficient confidence to experience water in a positive way. it includes learning to blow out or hum when the mouth or nose comes in contact with the water. point 2: disengagement is the process through which swimmers further develop their confidence and which allows them to start exploring the environment, moving away from the poolside, pool floor or the support of the therapist. point 3: transversal rotation control is controlling rotation around a transversal axis. for example, the sequence of floating on the back to reaching a vertical position in the water, pivoting around an axis which passes through both hips. point 4: sagittal rotation control is controlling rotations around a sagittal axis. for example, remaining vertical when reaching for an object placed to the side of the body and preventing pivoting around an axis perpendicular to the frontal plane of the body. point 5: longitudinal rotation control is controlling rotational movements taking place around a longitudinal axis. for example, preventing the rotation to the right side generated when turning the head to the right while floating horizontally on the back. in this example, the person is preventing rotation around an axis perpendicular to a transversal plane. point 6: combined rotation control is controlling any combinations of the above described rotations. at this point, the swimmer initiates or prevents several rotations at once. for example, moving forward from a vertical position to achieve a position floating on the back. point 7: up-thrust is when the swimmer learns that the water can help him or her to stay at the surface. having this experience increases the swimmer’s confidence to cope with less, or no, support. point 8: balance in stillness is about developing the ability to respond in a controlled way when unsupported in the water and balance is challenged. point 9: turbulent gliding is the swimmer moving through water with no direct support from the instructor and without making propulsive movements. for example, in a back float, the swimmer’s body is in motion thanks to the turbulence generated by the instructor’s hands and/or body. this helps the swimmer to maintain balance in stillness while experiencing increasing forces disturbing the position of his body in the water. point 10: simple progression or basic swimming strokes is about using simple movements to create propulsion; for example, clapping the hands on the thighs when in a back float to propel the body through the water. from the use of simple movements, more sophisticated swimming movements or strokes can be learned. gross motor function measurement-66 the gmfm-66 is a standardised observational instrument designed to measure changes in gross motor function over time in children with cp. the gmfm assesses motor function (how much the child can do) opposed to the quality of the motor performance (how well the child can do) (palisano & russell 1998). the 66 items on the gmfm-66 span the spectrum of activities, from lying and rolling-up, to walking, running and jumping skills. the gmfm provides detailed information on the level of difficulty of each item. it is a comprehensive evaluation of foundational gross motor skills, is responsive to change which makes it an ideal preor post-measurement and is useful for setting goals and planning interventions in therapy (bartlett et al. 2008). each child performed the test items without shoes, wearing shorts and a t-shirt, to ensure standardisation during testing. data analysis the gmfm-66 employs a four-point scoring system for each item. the 66 items are recorded according to the following classification: 0 = child unable to initiate the task; 1 = child initiates the task; 2 = child partially completes the task; 3 = child completes the task; and nt = not tested. each individual score was thereafter entered into a computer programme called the gross motor ability estimator. individual item scores for all 66 tests were then converted to an interval-level total score. an interval-level measurement of gross motor function based on a child’s score on the items of the gmfm was calculated. the computer scoring can be used to track scores over time and also generates item maps. these maps can inform the user which skills the child is likely to achieve next, which may be helpful for therapy. statistical analysis was performed using the statistical package for the social sciences (spss) software (version 21.0 for windows; ibm, armonk, ny, usa). alpha level was set at p < 0.05. the scores from the gmfm were compared preand post-intervention using the mann-whitney test. the paired t-test and the wilcoxon signed rank test were also used to determine significant differences preand post-intervention. a limitation of the gmfm score is that it gives no normative data for the total gmfm score. however, the gmfm is used as an observational tool, comparing preand post-test score improvements (avery et al. 2000). ethical considerations parental consent and child assent were obtained on an individual basis. the study was approved by the biomedical research ethics committee of the university (bf201/15). participation was voluntary and the participants were informed that they could withdraw from the study at any time. results pre-intervention and post-intervention included a 100% compliance from the 10 children for the duration of the study. during the intervention, each child began the halliwick concept at point 1 of the 10-point programme, gradually progressing to the next point at their own comfortable speed. however, two children encountered difficulty with the first two points. this was primarily because of this being their first time in a swimming pool. thus, the two children did not complete the 10-point programme within the 8-week intervention period. the remaining eight children completed the 10-point programme within the allocated 8-week intervention period. preand post-test results demonstrated that the aquatic-based intervention had a significant effect on the gmfm-66 item scores. the intervention group’s post-intervention score increased more (z = -2.803, p = 0.005) than the control group’s score. furthermore, the intervention group’s average score on the 66-item gmfm increased by 4.25 points. when applied to each group separately, to test whether the intervention had an effect, both groups showed gains following the aquatic-based intervention which were significantly greater than following no activity (z = -2.805, p = 0.005). as the study had a cross-over design, groups can be further divided into intervention and control and control and intervention. there was a significant difference in both intervention and control and control and intervention groups preand post-aquatic-based intervention (z = -2.023, p = 0.043 and z = -2.023, p = 0.043, respectively). additionally, to calculate the average of the post-intervention group and the post-control group scores, a mann-whitney test was applied. results showed that the wash-out period was long enough for the effect from the intervention not to be carried over when the groups crossed over. during the study, the researcher noted the following incidental findings. during pretests using the gmfm, the children performed several tasks, for example, walking up and down four steps with and without holding the rail. selected children, based on their past experiences, were unable to accomplish a selected task or tasks and therefore verbally declined to attempt the task. similarly, during the post-intervention testing, the same children once again verbally declined to attempt the same task, because of their perceived knowledge and attitude that they could not perform the task. moreover, the children were afraid to attempt the task, primarily because of fear of failure and/or injury. however, one of the children, during the pre-intervention testing, declined to walk up and down the steps, because of past experiences and an inability to adequately lift his or her feet off the ground. during the intervention, the child was able to walk correctly and lift his or her feet in the water, a movement that had not been possible previously. this, in turn, encouraged the child to perform all the assessments of the gmfm post-intervention testing. discussion this study investigated the carry-over effect of an aquatic-based intervention to land in children with cp. the aquatic-based intervention used the halliwick concept. unlike most aquatic programmes (fragala-pinkham, haley & o’neil 2008; fragala-pinkham et al. 2010) that mimic land-based activities, the halliwick incorporates rotational movements, balance and floating, hence facilitating sensory input (lambeck & gamper 2010). additionally, the static component promotes the activation of selective muscles and the stabilisation of specific joints (lambeck & gamper 2010). many of the activities can be repeated and varied, which teaches balance strategies that can provide carry-over effects to land (getz, hutzler & vermeer 2006). the halliwick concept has been used in studies on children with cp to examine its effect of neurological conditions. hou, wan and li (2010) found that the conventional rehabilitation, together with the halliwick concept, had significant effectiveness on the gait functions of children with spastic cp. similarly, this study uses the halliwick concept as part of an aquatic-based intervention to produce a carry-over effect, that is, improved gross motor function reflected in improved walking, running and jumping on land. these findings suggest that child aquatic therapy can improve motor function in children with cp, even in children classified with gross motor function at level iii, who are restricted in their ability to perform land-based activities. the aquatic-based intervention showed beneficial effects on the gross motor function of the children, as the average 66-item gmfm score increased by 4.25 points. according to wang and yang (2006), 66-item gmfm scores of > 3.7 show great improvement; scores of 1.6 – 3.6 indicate clinically significant improvement and scores < 1.6 indicate no clinically significant improvement. however, one should be cautious about claiming significant improvements, particularly after a short period of time. in this study, statistical analysis showed that the 1-month wash-out period was long enough for the effect from the intervention not to be carried over when the groups crossed over. therefore, the positive effects of the intervention were only short-term. furthermore, a possible reason for the increase in the 66-item gmfm score may be the thermal and mechanical effects of aquatic-based exercises (lai, lui & yang 2015). the thermal properties are helpful for pain and spasticity decreases. the mechanical properties offer benefits by decreasing the effect of gravity and joint loading, and assisting with postural support and muscular strength. the water viscosity extends falling time and allows the participants to experience movement patterns that allow their centre of gravity to be temporarily outside the base of support without the fear of falling. these factors have been credited with an increase in performance, such as neuromuscular co-ordination, muscular endurance and aerobic capacity (fragala-pinkham et al. 2008). additionally, the relaxing effect and the increased body weight support of the aquatic environment may have facilitated a reduction of spasticity and an increase in muscular strength, thus allowing the child to initiate movements that are restricted on land. this, in turn, allows for an improvement in postural control, balance and walking on land (becker 2009; currie & gorter 2011). an aquatic environment can provide benefits not achievable on land for children with cp who require reduced compressive loads on joints in order to achieve voluntary movement, and it can also be a fun environment filled with opportunity for improved sensory stimulation (barlow et al. 2009). in the water, the limiting movements of the condition appear less apparent in skill functions (heckathorn 1980). water is known to be an acceptable medium for treatment to relax abnormal muscle tone (harris 1978). the halliwick concept progressively teaches independence in water, a prerequisite for participation in therapeutic, recreational and vocational activities individually or in a group (lepore et al. 2007). on reaching point 10 of the halliwick concept, the child has the ability to perform basic swimming strokes. swimming has many psychodynamic aspects. it requires active movement, it is a structured activity and the participant can progress and note personal achievements (dumas 2001). the authors believe that with the combined expertise of the therapist, an activity such as swimming may be used to help achieve therapeutic goals, as well as recreational goals within a therapy programme, for children with cp. swimming may be perceived by the child as a recreational or sporting activity, not as therapy, and this may promote a sense of ‘normality’. however, if the halliwick concept is utilised as a treatment technique, it is imperative not to progress too rapidly through each point. the authors believe that point 1 (mental adjustment) in the halliwick concept is the most vital component and is the basis for the programme progression. a therapist should ensure that the child has gained sufficient confidence in water and that any fear of the water is overcome, before introducing new concepts. in this study, 2 children had not previously been exposed to aquatic therapy because of a perceived fear of the water. therefore, additional time was spent on point 1 of the halliwick concept, by gradually attempting to change their perceived fear of the water, that is, the mental adjustment. although, these 2 children did not complete the 10-point programme at the end of the 8 weeks, the authors believe that if the intervention period had been extended, the children would have completed points 9 and 10. the remaining 8 children progressed through the intervention programme as per halliwick concept design. the ability to perform movements more easily in water promotes a level of control and independence, which many people with disabilities cannot achieve on land (lepore et al. 2007). this study found that this control and independence achieved by the children was converted into a feeling that fuelled self-confidence. this self-confidence in turn appeared to alter the children’s perceptions and attitudes towards their personal capabilities. movements that children were unable, and/or perceived themselves unable, to perform on land were performed in the water. subsequently, with an increase in self-confidence, selected movements and movement patterns were carried over to land from the water. geralis (ed. 1998) believed that achievements in the water can lead to increased confidence. self-awareness and self-esteem will also improve as the child develops the ability to move and enjoy the water. aquatic-based exercises have also been found to promote pleasure, providing a chance to increase the enthusiasm of the children and aiding the motor development in children (lai et al. 2015). hence, an aquatic-based exercise programme, like in this study, can be conducted as an effective substitute for, or complementary treatment to, the conservative therapy for children with cp. a therapist should always aim to adopt reliable and valid activities or techniques to incorporate within treatment modalities. however, it is important to assess the patient’s response to that particular treatment in order to develop a successful programme. the individual’s co-operation and involvement is essential in treatment planning (currie & gorter 2011). children have been found to respond positively to activities presented in a non-threatening manner. the direct participation of staff or family members in activities may help encourage the child and meet the developmental needs of the child (kellaghan, sloane, alvarez & bloom 1993). particularly with the inclusion of an aquatic component, support from parents, teachers and other health professionals is vital. in this study, part of its success can be attributed to the support from parents and school teachers, as well as the physiotherapist and occupational therapist who worked regularly with the children. although, in this case, direct participation was not permitted during the intervention sessions, their positive attitude to participation and encouragement of the children in the programme was noted. the level of enjoyment of the programme used in this study was not measured. however, it was clear that the aquatic based-programme seemed to be enjoyable for the children, which ensured their participation and the completion of the intervention. overall, this study has shown that an aquatic-based intervention is physically beneficial to children with cp. it was observed that the improved effectiveness of the aquatic-based programme was primarily based on the ability of the child to participate at a high comfort level in the water, thus enabling the completion of all activities. the ability to move freely in the aquatic environment at the beginning of the programme seemed to be beneficial to the children. the children were motivated to participate in activities and exercises for the 16 intervention sessions. lastly, findings from this study provide a basis for further research in areas of aquatic-based activity and physical activity in children with cp. there is still a need for well-designed intervention studies with adequate sample sizes in a population with a wider range of severity levels, although gmfcs levels iv and v can be challenging. forthcoming studies should also vary aquatic therapy protocols, such as community-based group therapy, family participation and longer intervention periods. another recommendation would be to measure the effects of aquatic-based therapy, progressing to a land-based therapy versus land-based therapy only. studies should include muscle activation through electromyography (emg) techniques. such imaging can be used preand post-intervention, as well as pre and post each aquatic session. an important aim of the halliwick concept is muscle activation for postural gains and balance in the water, which is carried over to land. therefore, by measuring the carry-over effect of aquatic-based programmes to land-based programmes, it can help with assessing the effectiveness of treatment plans for children with cp. additionally, a questionnaire to record the child’s enjoyment of, interest in, motivation for and confidence exercising in the water may offer information on additional factors which could influence future rehabilitation programmes. limitations of the study this study had several limitations. firstly, it had a small number of participants, and therefore, the possibility of extrapolating to other populations is limited. secondly, the participants did not have a broad range of severity levels: no participants had gross motor function classified at gmfcs levels iv and v. thirdly, the study was designed as aquatic-based exercise only and determined the carry-over from water to land, but did not determine the effect of land-based exercise only. fourthly, the study was conducted over 8 weekly sessions for each participant, which put a time restraint on some participants as they did not finish the whole 10-point programme. and lastly, a questionnaire to assess the enjoyment and or psychological status of the participants, which would have strengthened the overall study design, is warranted in future studies. conclusion in conclusion, an 8-week aquatic-based intervention has the potential to produce greater gains in gross motor function in children with cp, also producing a significant carry-over effect onto land. however, this study has shown that after a month of no aquatic activity, gains in gross motor function are reversible. therefore, it suggested that aquatic-based programmes should be integrated and considered as an essential continuous mode of treatment for children with cp, to ensure long-term improvements in gross motor function. moreover, aquatic therapy is an innovative therapy for children with marked motor impairments, as movements in land-based exercises are restricted for this population. acknowledgements the authors would like to thank the journal reviewers of this article and mr david hughes, a disability consultant in namibia, for his invaluable contributions. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.j.b. was the principal researcher and was responsible for the data 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23, 20. wang, h.y. & yang, y.h., 2006, ‘evaluating the responsiveness of 2 versions of the gross motor function measure for children with cerebral palsy’, archives of physical medicine rehabilitation 87(1), 51–56. https://doi.org/10.1016/j.apmr.2005.08.117 ajod 7_2018_contents.indd http://www.ajod.org open access table of contents i original research dyslexic learners’ experiences with their peers and teachers in special and mainstream primary schools in north-west province monicca leseyane, peter mandende, mary makgato, madoda cekiso african journal of disability | vol 7 | a363 | 05 march 2018 original research ‘i felt pain. deep pain…’: experiences of primary caregivers of stroke survivors with aphasia in a south african township khetsiwe p. masuku, munyane mophosho, muziwakhe d. tshabalala african journal of disability | vol 7 | a368 | 08 march 2018 original research ‘how deep are your pockets?’ autoethnographic reflections on the cost of raising a child with autism mary g. clasquin-johnson, michel clasquin-johnson african journal of disability | vol 7 | a356 | 27 march 2018 original research the postural stability of children with foetal alcohol spectrum disorders during one-leg stance: a feasibility study yolandi brink, john cockcroft, soraya seedat, philip may, wendy kalberg, quinette louw african journal of disability | vol 7 | a319 | 29 march 2018 original research an analysis of trunk kinematics and gait parameters in people with stroke adnil w. titus, susan hillier, quinette a. louw, gakeemah inglis-jassiem african journal of disability | vol 7 | a310 | 29 march 2018 original research communication rehabilitation in sub-saharan africa: the role of speech and language therapists karen wylie, lindy mcallister, bronwyn davidson, julie marshall african journal of disability | vol 7 | a338 | 12 april 2018 original research the intersection of disability and food security: perspectives of health and humanitarian aid workers candice a. quarmby, mershen pillay african journal of disability | vol 7 | a322 | 30 april 2018 original research hearing children of deaf parents: gender and birth order in the delegation of the interpreter role in culturally deaf families nomfundo f. moroe, victor de andrade african journal of disability | vol 7 | a365 | 30 april 2018 original research the effect of synchronised metronome training: a case study in a single leg, below knee paralympic sprinter barry s. andrews, elizabeth s. bressan african journal of disability | vol 7 | a367 | 23 may 2018 80 87 94 102 112 118 127 136 146 page i of ii table of contents i book review rethinking disability: the need to rethink representation jenna-lee procter african journal of disability | vol 7 | a498 | 10 may 2018 opinion paper deafening silence on a vital issue: the world health organization has ignored the sexuality of persons with disabilities christine peta african journal of disability | vol 7 | a474 | 16 july 2018 review article intellectual disability rights and inclusive citizenship in south africa: what can a scoping review tell us? charlotte capri, lameze abrahams, judith mckenzie, ockert coetzee, siyabulela mkabile, manuel saptouw, andrew hooper, peter smith, colleen adnams, leslie swartz african journal of disability | vol 7 | a396 | 25 april 2018 review article the benefits of hydrotherapy to patients with spinal cord injuries terry j. ellapen, henriëtte v. hammill, mariëtte swanepoel, gert l. strydom african journal of disability | vol 7 | a450 | 16 may 2018 review article simple ideas that work: celebrating development in persons with profound intellectual and multiple disabilities ann bullen, rosemary luger, debbie prudhomme, martha geiger african journal of disability | vol 7 | a273 | 05 june 2018 review article the relationship between social support and participation in stroke: a systematic review toughieda elloker, anthea j. rhoda african journal of disability | vol 7 | a357 | 10 october 2018 review article parents of children with disabilities: a systematic review of parenting interventions and self-efficacy ameer s.j. hohlfeld, michal harty, mark e. engel african journal of disability | vol 7 | a437 | 17 october 2018 review article implementation of the 2006 convention on the rights of persons with disabilities in zimbabwe: a review cowen dziva, munatsi shoko, ellen f. zvogbo african journal of disability | vol 7 | a389 | 22 october 2018 review article part 1: a review of using photovoice as a disability research method: implications for eliciting the experiences of persons with disabilities on the community based rehabilitation programme in namibia tonderai w. shumba, indres moodley african journal of disability | vol 7 | a418 | 01 november 2018 1 3 6 23 31 41 50 62 69 vol 7 (2018) issn: 2223-9170 (print) | issn: 2226-7220 (online)african journal of disability http://www.ajod.org open access table of contents ii original research preferred rehabilitation setting among stroke survivors in nigeria and associated personal factors grace vincent-onabajo, zulaiha mohammed african journal of disability | vol 7 | a352 | 17 july 2018 original research analysing disability policy in namibia: an occupational justice perspective tongai f. chichaya, robin w.e. joubert, mary ann mccoll african journal of disability | vol 7 | a401 | 31 july 2018 original research support to address barriers to learning for learners who are deaf peter mapepa, meahabo d. magano african journal of disability | vol 7 | a381 | 22 october 2018 original research perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the western cape nondwe b. mlenzana, arne h. eide, jose m. frantz african journal of disability | vol 7 | a415 | 25 october 2018 original research the carry-over effect of an aquatic-based intervention in children with cerebral palsy samantha j. ballington, rowena naidoo african journal of disability | vol 7 | a361 | 29 october 2018 original research part 2: the feasibility of utilising photovoice method and the world health organization quality of life instrument in evaluating the community-based rehabilitation programme in namibia: a pilot study tonderai w. shumba, indres moodley african journal of disability | vol 7 | a419 | 01 november 2018 158 169 177 182 190 original research the impact of stroke on people living in central uganda: a descriptive study julius t. kamwesiga, lena k. von kock, gunilla m. eriksson, susanne g.e. guidetti african journal of disability | vol 7 | a438 | 29 november 2018 original research exploring the concerns of persons with disabilities in western zambia shaun cleaver, helene polatajko, virginia bond, lilian magalhães, stephanie nixon african journal of disability | vol 7 | a446 | 29 november 2018 original research ubuntu considered in light of exclusion of people with disabilities sindile a. ngubane-mokiwa african journal of disability | vol 7 | a460 | 29 november 2018 original research investigating barriers teachers face in the implementation of inclusive education in high schools in gege branch, swaziland sifiso l. zwane, matome m. malale african journal of disability | vol 7 | a391 | 06 december 2018 case study lessons from the pilot of a mobile application to map assistive technology suppliers in africa surona j. visagie, rebecca matter, george m. kayange, mussa chiwaula, mark harniss, gubela mji, elsje scheffler african journal of disability | vol 7 | a422 | 29 march 2018 reviewer acknowledgement african journal of disability | vol 7 | a594 | 05 december 2018 221 232 239 251 255 page ii of ii 152 214 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) mandi broodryk foundation for alcohol related research, cape town, south africa jaco g. louw foundation for alcohol related research, cape town, south africa debbie acker foundation for alcohol related research, cape town, south africa denis l. viljoen foundation for alcohol related research, cape town, south africa department of obstetrics and gynaecology, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa leana olivier foundation for alcohol related research, cape town, south africa citation broodryk, m., louw, j.g., acker, d. viljoen, d.l. & olivier, l., 2024, ‘life outcomes in adults living with fasd in a rural south african community: a follow-up study’, african journal of disability 13(0), a1386. https://doi.org/10.4102/ajod.v13i0.1386 original research life outcomes in adults living with fasd in a rural south african community: a follow-up study mandi broodryk, jaco g. louw, debbie acker, denis l. viljoen, leana olivier received: 27 nov. 2023; accepted: 15 july 2024; published: 26 aug. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: even though adults with foetal alcohol spectrum disorder (fasd) are at risk of negative life outcomes, there is no published evidence of this in south africa, which has the highest estimated fasd prevalence rate globally. objectives: the purpose of the study was to describe and compare the life outcomes of adults with fasd and adults without fasd in a south african rural community, 16 years after diagnosis. method: participants were examined and interviewed regarding their biographical information, knowledge of fasd, information on their family, relationships, home circumstances, education, work and medical history. results: adults with fasd were less likely to be in a relationship and more likely to have poor educational outcomes and to be exposed to violence as victim or perpetrator than their peers who did not have fasd. none of the participants with fasd completed secondary school successfully. no differences were found for independent living, employment, health, substance use and legal outcomes, between the foetal alcohol syndrome (fas) or partial foetal alcohol syndrome (pfas) and control group. conclusion: while significant differences existed in certain aspects, differences are not as stark as one would expect between individuals with fasd and controls. contribution: this study highlights the importance of considering the social context in which a fasd diagnosis is made. the comparative negative impact of an fasd diagnosis and the associated challenges on life outcomes may be less pronounced in rural communities where everyone has fewer opportunities and resources. this can also make the unique needs of persons with disabilities less visible. keywords: prenatal alcohol exposure; persons with disabilities; life course research; fetal alcohol spectrum disorder; fetal alcohol syndrome; fas. introduction foetal alcohol spectrum disorder (fasd) is an umbrella term for a highly prevalent and preventable spectrum of disorders caused by prenatal alcohol exposure. foetal alcohol spectrum disorder consists of diagnoses of foetal alcohol syndrome (fas), partial foetal alcohol syndrome (pfas), alcohol-related neurodevelopmental disorder (arnd) and alcohol-related birth defects (arbd). characteristics of fasd include recognisable facial differences, intrauterine growth restriction or failure to thrive and deficits in neuropsychological development (hoyme et al. 2016), which all have significant lifelong effects on mental and physical health, behaviour, educational achievements, employment, independent living, substance use and offending behaviour (domeij et al. 2018; landgren et al. 2019; mclachlan et al. 2020; popova et al. 2021; rangmar et al. 2015; spohr & steinhausen 2008; temple et al. 2021). when referring to the sequalae related to an fasd diagnosis, a distinction between primary and secondary disabilities can be made. primary disabilities refer to cognitive impairment in individuals with fasd. these disabilities can be measured by general intelligence, mastery of reading, spelling, math, and level of adaptive functioning, which represent the central nervous system consequences of the disorder (streissguth et al. 1996). secondary disabilities refer to problems that occur as a result of primary disabilities and are not present at birth (moore & riley 2015; streissguth et al. 1996). these can be prevented or improved with appropriate interventions and understanding (streissguth et al. 1996). previous research on secondary disabilities in fasd populations identified that conflict with the law (kambeitz et al. 2019; mclachlan et al. 2019; popova et al. 2021; streissguth et al. 1996), mental health issues (grant & connor 2005; huggins et al. 2008; landgren et al. 2019; pei et al. 2011; popova et al. 2021; spohr, willms & steinhausen 2007; temple et al. 2021), alcohol and substance abuse (mclachlan et al. 2020; streissguth et al. 1996, 2004), physical, sexual or verbal abuse (kambeitz et al. 2019), educational achievement (domeij et al. 2018; mclachlan et al. 2020; streissguth et al. 1996, 2004) and foster or residential care placement (kambeitz et al. 2019; mclachlan et al. 2020) is common. there is little information about the challenges and life outcomes in adult individuals with fasd compared to those without fasd. previous literature on this topic focuses on individuals with fasd, which often include individuals with an fas-specific diagnosis (grant & connor 2005; huggins et al. 2008; streissguth et al. 1996), without a comparison group. there is also little literature about long-term follow up of an fasd cohort with a focus on life outcomes, especially in comparison to individuals without fasd. furthermore, research on this topic is lacking in south africa, where the highest published prevalence rates of fasd have been reported globally. to date, the highest reported fasd prevalence in the world, has been estimated in the western cape province of south africa, at 310 per 1000 (31%) (may et al. 2022). this study aimed to describe and compare the life outcomes of adults diagnosed with fasd in a 2001 prevalence study in the emthanjeni local municipality in the northern cape province of south africa where a prevalence rate of 119.4 per 1000 (11.9%) was reported (olivier 2017; urban et al. 2008). we hypothesised that adults with fasd, which included a fas or pfas diagnosis specifically, would be less likely to complete secondary education (12th grade), less likely to be employed, more likely to have conflict with the law, have a higher incidence of health problems, less able to live independently, as well as experience more social problems. we will refer to individuals diagnosed with fas or pfas instead of fasd as during the prevalence study when the diagnoses were made, arnd and arbd were not diagnosed. we therefore aim to provide contextual evidence that will address the presumptions made in our hypothesis and the gaps in current published evidence. research methods and design community the community where this study was conducted and from which the study participants came, is close to the centre of south africa, 250 kilometres from kimberley, the capital of the northern cape province. this rural town is part of the emthanjeni local municipality which, at the time of this follow-up study, had a population size of approximately 47 609 (northern cape provincial treasury 2019). an unemployment rate of 35.10% has been reported with only 4% of the population having completed secondary school (12th grade) (northern cape provincial treasury 2019). sample this was a longitudinal cohort study. this study followed up on a cohort of individuals diagnosed with fasd as part of an fasd prevalence study conducted on the emthanjeni municipality in 2001, as well as their matched controls (urban et al. 2008). in the 2001 study, children diagnosed with fasd were matched with healthy controls based on age and sex (urban et al. 2008). all cases and controls from the 2001 study were invited to participate and no further matching of controls was performed. the individuals who were able to locate and who still stayed in the same town in the northern cape, and provided informed consent, participated in this study. all participants stayed in areas commonly associated with low socioeconomic status, and they attended school in the same areas. as the controls were matched in 2001 and as they lived in the same environment there were no significant demographic or social differences. in the 2001 study, no significant differences in socioeconomic conditions were reported except for a higher occurrence of part-time employment or unemployment for the guardians of the children in the fasd group (77% in the control group compared to 92% in the fasd group). this data included two study sites, however, and a specific comparison for the current setting is not available. ethical considerations ethical approval for this study was obtained from the faculty of medicine and health sciences’ health research ethics committee at stellenbosch university (ethics reference number: n13/01/008a). written informed consent was obtained from 30 of the participants who were diagnosed in 2001 and 30 controls, and the study was conducted in accordance with the helsinki declaration as revised in 2013. data collection community workers located participants from the earlier study still residing in the area, made possible by the small size of the community. each potential participant was then approached, and the study procedure, aims, expectations, risks and benefits associated with participation were discussed. written informed consent was obtained from participants. participants were first examined by a clinician and then interviewed by trained interviewers about their biographical information, understanding of fasd, information about their family, relationships, home circumstances, education, work and medical history, as well as risk-taking behaviour. a parent, guardian or collateral informant (in cases where the parents were deceased or untraceable) of each participant was also interviewed about the participant. questions that were asked were based on previous literature on negative life outcomes and epidemiology studies (chudley et al. 2007; moore & riley 2015). further input was also obtained from professionals working in the area of expertise to inform the information collected. data analysis descriptive statistics were used to analyse information obtained on the participants’ life outcomes from the interviews conducted. to establish whether differences between group membership (fas or pfas vs. control) and specific life outcomes (yes or no) were present, pearson chi-square analyses were conducted for each life outcome measure. as both variables were categorical, frequency data were used. in addition, if the sample was large, and the expected count per cell was more than five, the assumptions to use the chi-square test statistic were met. where significant differences were found, the strength of the correlation was calculated using the cramer’s v test (mchugh 2013). if the sample size was too small and less than 80% of expected counts were below 5, the fisher’s exact test (2-sided) was used. if significant, the odds ratio was used as a risk measure, and the cramer’s v test was calculated as an effect size. study data were captured and managed using redcap electronic data capture tools (harris et al. 2019). the study data were analysed using ibm spss statistics (version 25) (‘spss statistics for windows’ 2017). results demographic data in total, 52 participants completed the study with an equal number of females and males (n = 26; 50%). see table 1 for a summary of the age and sex for each group (fas or pfas vs. controls). most of the participants’ home language was afrikaans (n = 46, 88.5%), followed by bilingual (not specified) (n = 2, 3.8%), xhosa (n = 2, 3.8%), english (n = 1, 1.9%) and other (not specified) (n = 1, 1.9%). table 1: age and sex at baseline and follow up by group. life outcomes household and social after pearson chi-square analyses were conducted on the life outcome measures (binary yes or no answers), a significant difference between the group that the participant belonged to and whether they were currently in a relationship at the time of the interview was found, x2 (1, n = 52) = 4.461, p = 0.035. however, the effect size for this finding, cramer’s v, was low, φ = 0.293 (cohen 1992). seventy-two per cent of the controls had a partner with only 43.5% in the fas or pfas group reporting the same. no association between groups and whether participants had children was found, x2 (1, n = 51) = 2.48, p = 0.115. a significant association between groups and whether both participants’ parents were still alive was found, x2 (1, n = 52) = 4.461, p = 0.0.35. however, a low effect size was found, φ = 0.293. sixty-seven participants in the control group had both parents still living in comparison with 32% in the fas or pfas group. refer to table 2. table 2: life outcome comparisons between groups. independent living no significant association was found between groups and whether a participant manages their own finances, x2 (1, n = 52) = 0.015, p = 0.904. no significant association between groups and the ability to function independently was found, x2 (1, n = 52) = 1.248, p = 0.307). refer to table 2. education with regard to schooling, a significant association between groups and highest level of education was found, x2 (1, n = 52) = 10.199, p = 0.002. all the participants in the control group reported their highest qualification was in secondary school (8th to 12th grade in south africa), with only 70% of participants in the fas or pfas group reporting the same. a significant association between group and completing their full secondary school education was also found, x2 (1, n = 52) = 18.330, p = 0.000, with a high effect size φ = 0.594. none of the participants in the fas or pfas group successfully completed secondary school, with 55% of participants in the control group completing secondary school successfully. a significant difference was found for group membership and repeating a grade x2 (1, n = 52) = 3.895, p = 0.048, with a low effect size, φ = 0.048. just over half of the control group reported repeating at least one grade, compared to 78% of the fas or pfas group, with a significant association, x2 (1, n = 52) = 5.987, p = 0.014, and a moderate effect size, φ = 0.339. ten per cent of the control group missed school regularly compared to 39% of the fas or pfas group. a significant association between group membership and attending a special needs class at school or attending a learners with special educational needs (lsen) school was found, x2 (1, n = 52) = 4.392, p = 0.036, with a low effect size of φ = 0.291. fourteen per cent of the control group attended these classes or schools compared to 39% in the fas or pfas group (refer to table 2). employment and income group and employment status did not show a significant association, x2 (1, n = 52) = 0.092, p = 0.762. with majority of the total sample reported being unemployed (n = 46, 88.46%). no associations were found between groups for receiving social grants, x2 (1, n = 44) = 0.052, p = 1.000, with only 36.36% of the total sample receiving a social grant, regardless of the high unemployment rate for the total sample (64%). no significant associations were found between groups and having experienced times where participants could not afford to eat for the day, x2 (1, n = 51) = 2.021, p = 0.155, with 56.86% (n = 28) of participants in the total sample reporting that they did experience this. legal and/or conflict with the law a significant association between groups and having been stabbed or shot before was found, x2 (1, n = 52) = 9.670, p = 0.002, with a moderate effect size, φ = 0.431. forty-three per cent of the fas or pfas group were stabbed or shot before, with 6% of the control group reporting the same. in addition, a significant difference was found for group membership and having stabbed or shot someone else before, x2 (1, n = 51) = 7.307, p = 0.011. an odds ratio was calculated as the fisher’s exact test statistic was used because of 50% of expected counts being under 5. the odds ratio was calculated as 1.294, with the control group 1.294 times more likely not to stab or shoot someone in the past. zero per cent of the control group reported having shot or stabbed someone before compared to 23% for the fas or pfas group. refer to table 2 and table 3 for a summary of the non-significant results. table 3: health behaviour outcome comparisons between groups. discussion this study aimed to compare life outcomes of adults with and without fas or pfas. the majority of previous research on individuals with fas did not have a control group to assess the differences in life outcomes and between peer groups (freunscht & feldmann 2011) with a high majority of their sample populations being adoptees or foster care patients or in assistant living environments (freunscht & feldmann 2011). most participants with fas or pfas in this study’s cohort (66%) reported growing up with a family member, with 43% of individuals growing up specifically with only their biological mother or father. individuals with fas or pfas were as likely to grow up in the foster care system or with non-relatives as those without fas or pfas. having a diagnosis of fas or pfas increased the likelihood of having one or both parents’ deceased and decreased the likelihood to be in a relationship at the time of the study. this could be because of an increased likelihood of parental alcohol abuse and associated adverse physical and psychosocial consequences (matzopoulos et al. 2014; probst et al. 2018). clear differences between education level were found, with individuals with fas or pfas, being more likely to repeat grades, attend special needs classes or schools, miss school regularly and were less likely to complete their secondary school education. this is consistent with a previous study with a swedish cohort where individuals with fas were more likely to complete special education and/or primary school as their highest education level (rangmar et al. 2015). this finding suggests that these individuals struggled to keep up with the available curriculums at school and emphasises the need for tailored support for individuals diagnosed with fas or pfas (millians 2015; millar et al. 2017). furthermore, none of those in the fas or pfas group in this study successfully completed secondary school compared to 55% of the control group. when comparing this to the swedish cohort where at least 45.7% of individuals diagnosed with fas completed secondary education, our finding seems like an especially poor outcome. as only 55% of controls completed secondary school in our sample however, this is not as striking. an important factor contributing to lower academic achievement could be that the participants in our study fall within a low socioeconomic status cohort, which is associated with lower academic success (chevalère et al. 2023) and the neurodevelopmental challenges faced by individuals in the fas or pfas group could further impact academic achievement (lange et al. 2017). the secondary school dropout rate seems to be reflected in the high unemployment rate of this cohort. the high unemployment rate in the community could be linked to the community’s anecdotal report that low priority is placed on education, which also explains the high dropout rate in the control group. learners might have little motivation to learn and stay in school because of the low priority placed on education from communities and families (nortje 2017). interestingly, no differences were found with regards to independent living, managing one’s own finances, employment status, or likelihood to receive government social relief grants. this is inconsistent with previous literature in fas populations (freunscht & feldmann 2011). it appears as if the true impact of a fas or pfas diagnosis was not necessarily depicted due to environmental factors of this study’s participants. low socioeconomic status, lack of job opportunities, lack of academic achievement and the high level of unemployment across the entire sample (88%) suggest there might not be opportunities to thrive as they would be in other communities with more resources and access to services. no difference in health-related outcomes and reports of current physical violence or abuse by partners were found. a lack in difference between health-related outcomes is surprising, as individuals with fas or pfas have an exceptionally high frequency of adverse health outcomes (popova et al. 2021) and have been shown to utilise health care services more regularly (credé et al. 2011). it might be that a general lack of access to healthcare and not going to the local primary healthcare clinic or doctor as often had an impact on this finding. something like depression will not be diagnosed if the individuals do not seek out treatment or know that they have symptoms of depression due to a lack of awareness or psychoeducation. consistent with findings from rangmar et al. (2015), no differences were found in outcomes related to criminal history or trouble with the law. interesting to note was, that differences between the likelihood of stabbing or shooting someone else or being the victim thereof, were more likely in the fas or pfas group. this may allude to problems with aggression, impulse control and not understanding the consequences of actions that are often associated with fas (lange et al. 2018). in contrast to previous studies, no differences were found in alcohol and/or substance use behaviours, history of acquiring a head injury, experiencing seizures or birth problems or defects (rangmar et al. 2015). conclusion our findings highlight the differences between adults with fas or pfas, and adults without fas or pfas in a south african rural community. to the authors’ knowledge, this study is the first of its kind comparing life outcomes and not merely reporting the frequency of these outcomes in a fas or pfas population. adults with fas or pfas face specific challenges when compared to controls. however, our findings suggest that individuals with fas or pfas not only face their own unique challenges as persons with disabilities, but additionally need to combat the socio-economic challenges that impact all adults living in the same rural community, regardless of a fas or pfas diagnosis. in a community where the percentage of unemployment in the total sample is above 85%, with no differences between the persons with disabilities and controls, the needs of adults with fas or pfas are not only related to their disability, but also needs to be investigated in the socio-economic setting from a holistic perspective. the poor educational outcomes in the fas or pfas group highlight the failures of the education system in supporting persons with disability. more allowance must be made for special schooling, remedial education and the support of learners with special needs in the mainstream. although this is not unique to persons with fas or pfas, we should be concerned about the lack of health and welfare services available to these individuals. they may need long-term care and their subjective evaluation of their ability to live independently cannot be taken at face value. in this rural and under-resourced community, there is no social safety net for persons with fas or pfas whose caregivers pass away or can no longer look after them. policy makers should seriously consider the long-term needs of those affected by fas or pfas, especially given the high prevalence rate in this area. acknowledgements the authors would like to thank the sponsors of this research, aware.org and solar capital de aar, the participants and their parents’ willingness to participate, and the farr staff. special thanks are also given to dr emma krzesinski for her contributions. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors, m.b., j.g.l., d.a., d.l.v., l.o. have read and approved the article for submission. they have made a substantial contribution to the conception, design, gathering, analysis, interpretation of data, writing and intellectual content of the article; and acknowledge that they have exercised due care in ensuring the integrity of the work. funding information this work was funded by aware.org and solar capital de aar. data availability the data that support the findings of this study are not openly available because of confidentiality and ethical considerations. it is however available from the corresponding author, m.b., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s 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acknowledgements references footnote about the author(s) mary wickenden institute of development studies, university of sussex, brighton, united kingdom citation wickenden, m., 2024, ‘using participatory and inclusive methodologies to explore inclusive education in africa’, african journal of disability 13(0), a1486. https://doi.org/10.4102/ajod.v13i0.1486 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa’, under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research using participatory and inclusive methodologies to explore inclusive education in africa mary wickenden received: 30 may 2024; accepted: 19 aug. 2024; published: 18 oct. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: this paper presents researchers’ experiences using participatory, inclusive research methodologies to explore aspects of inclusive education, with children with disabilities, parents, and teachers in nigeria and kenya. objectives: the objective is to describe working with children and adults with disabilities, as research collaborators, alongside local ingo staff and opd partners. method: in kenya we worked with 9 peer researchers with disabilities to run focus groups and interviews with children with disabilities, parents and teachers about inclusive pre-school education. in nigeria we ran participatory workshops with children with disabilities, and their parents discussing what makes school and community settings inclusive, to inform the design of a wellbeing and inclusion checklist. the studies were based in pilot primary schools and early childhood development and education (ecde or pre-school) classes in nigeria and kenya respectively. the data produced were recordings and notes from focus group discussions, interviews and activities and reflections from the peer researchers. data analysis was an inclusive participatory process of thematic analysis carried out in person and online. results: these innovative approaches demonstrate that with careful planning and support, both adults and children with disabilities can be involved very directly in research processes not just as participants but as researchers. conclusion: we argue that using participatory, disability-inclusive approaches helps to make the findings more nuanced and genuine and the data and outputs generated uniquely grounded in people’s realities and perspectives. contribution: these methods can potentially inform the mainstreaming of a disability inclusion approach into international development debates and activities. keywords: participatory; inclusive research; inclusive education; qualitative; africa. introduction this paper presents researchers’ experiences of using participatory, inclusive research methodologies to explore aspects of inclusive education, with children with disabilities, their parents, and teachers in two projects, in nigeria and kenya. the studies, which are part of the united kingdom (uk) government aid funded (foreign, commonwealth and development office, fcdo) disability inclusive development (did) programme, are briefly described. however, the aim here is to showcase the use of participatory research methods, directly involving participants who are most impacted by the interventions being undertaken by the larger programme in which the research is nested. the studies provided in-depth insights into the participants’ perspectives on inclusion and inclusive education, in the context of two projects being run to pilot increased enrolment of children with disabilities in their local mainstream schools. the detail and results of the studies themselves are reported elsewhere. the focus here is on the use of participatory methods, their advantages and disadvantages, and the potential for more extensive use of these approaches within the disability research arena and beyond. background underpinned by the aspirations of the united nations (un) convention on the rights of persons with disabilities (crpd) (un 2006) and the sustainable development goals (sdgs) agenda (un 2015, 2018), the most prominent rhetoric within the disability sector currently is the mantra ‘nothing about us without us’. this is understood to refer to policy formation, inclusive interventions and service provision across various sectors (e.g. employment, health, education, community development) and demands regular consultations and engagements at community level about a range of issues affecting disabled people (charlton 1998; nind 2014). a move towards disability inclusion has been promoted by various un bodies and lobbying groups (wescott, maclachlan & mannan 2021; undesa 2013, n.d.). however, importantly but less recognised perhaps, this disability aware and inclusive approach should also apply to research activities. explorations and investigations about the lives of disabled people1 should necessarily involve the target population directly in the research processes as far as possible. this is arguably a less straightforward arena for truly participatory and inclusive approaches than other activities. career researchers who have spent years honing their specialist skills may be unaware of the need or be reluctant and might inadvertently put barriers in the way of disabled participants’ involvement in research processes. participatory research participatory research has become a popular choice of investigative approach in many community development and international development arenas in the last three or four decades (bergold & thomas 2012). there are a number of variations in exact philosophy and methods, and in the names and acronyms used, for example, participatory rural appraisal (pra) (eds. reason & bradbury 2008), participatory action research (par), community based participatory research (cbpr) (greenwood 2016), and many others (burns, howard & ospina 2021). there are of course subtle differences in core concepts between them, but essentially in common to all is a commitment towards engaging meaningfully with the study population of interest and involving them in many if not all aspects of the research process, including: conceptualising the research idea and questions, advisory roles, choice of methods and planning, generating and gathering data, analysis and interpretation and dissemination of findings. the extent to which participants are involved in all of these is hugely variable, but a spirit of equity, openness and involvement is vital. co-production, the joint generation of the findings, is seen as foundational (barke, thomas-hughes & howard 2020; thomas-hughes & mcdermont 2021). an underlying assumption is that the members of the community are ‘experts’ in their lives and their perspectives are key to understanding the topic of interest, whatever that might be (eds. kindon, pain & kesby 2007; ospina 2021). research is seen as a relational activity, where the relationships between the researcher and the participants are equalised as far as possible, power gradients are flattened; therefore, there is more equality between different people than is perhaps usual in most research contexts (chambers 1997; gaventa & cornwall 2008). it is a dialogic endeavour, involving mutual enquiry and learning for all. therefore, in participatory research ‘the other’ is a co-producer of the new knowledge. there is a strong influence from the work of freire, where a process of conscientisation, a ‘coming into awareness’ is key. participants, through being involved, gain deeper insights into their own life worlds and situations. they are developing local knowledge through reflection and participation, not just increased awareness, and this may lead to subsequent actions and change. thus, the usual dominant research epistemologies, which assume the dominance and validity of certain types of (often positivist, objective research-driven) knowledge, are challenged, and the understandings and experiences of people and communities themselves are sought, privileged and valued in the interests of driving social transformation from the ‘bottom up’ (gaventa 2006). often a wide range of creative, visual and performative methods are used in participatory research, as well as more flexible and discursive verbal approaches such as storytelling and narrative enquiry (lewin & shaw 2021; lewis & hildebrandt 2020). these then provide maximum opportunities for participation, including for people who may find purely verbal (spoken or written) formats intimidating or impossible. disability inclusive research arguably, all disability aware research should necessarily be inclusive in its ethos and practice, and intentional in its design, with the aim of ensuring that people with a range of impairments and access and/or support needs can participate as much as anyone else. the provision of whatever support and accessibility adaptations are needed is foundational to disability inclusive research as it tells potential participants that their contribution will be listened to and taken seriously. debates have raged over the last 40 years or so about the status of and rules of engagement around doing research with disabled people and about disability (oliver 1992; zarb 1992). the relationship between researchers and those they are researching, is a sensitive issue and often contested. this includes discussion about the role of non-disabled researchers (stone & priestley 1996), about what makes methods inclusive (kitchin 2000) and whether all research should necessarily be framed as emancipatory (barnes 2003; berghs 2017). there has been an acceleration in the development and use of disability inclusive participatory methodologies since the launch of the groundbreaking un crpd in 2006 (un 2006). this treaty underlines the rights of disabled people to equal citizenship and specifies their right to participation in any affairs that relate to them, epitomised in the mantra ‘nothing about us without us’ (charlton 1998; see uncrpd articles 4.3, 32 and general comment 7). thus, the process of conscientisation aforementioned is coming into action, through the gathering and amplifying of disabled people’s voices, talking about a wide range of issues. the opportunity for these counter-narratives to challenge dominant ablest, stigmatising and exclusionary discourses about disability and being different are being taken up and sometimes people’s perspectives are being sought for the first time. this trend has been driven in large part by the very active global network of organisations of people with disabilities (opd), who have become increasingly well organised and vocal (e.g., ida 2022). people who have habitually been internally oppressed are now being asked for their views and expressing them strongly, given the opportunity and through the use of inclusive methods (reeve 2014; shevlin & rose 2022). working with people with disabilities as active participants in research and increasingly as co-investigators as part of research teams, is producing more authentic data, giving insights into their worlds and concerns, and during the analysis of their interpretation of situations. interest in and respect for their views is growing, and professional researchers are realising that without these insider views, their findings will sound hollow and will lack nuance. disabled people’s active involvement in research is becoming seen as essential. co-productions, powerful and inductive processes that collect and analyse data from the bottom-up, are becoming recognised for their value. the extent to which disabled people are becoming involved in all stages of the research process is variable, as is their level of participation and type of engagement. thus, an aspiration would be that they will contribute to all stages: research design, data generation, analysis and interpretation, validation and dissemination. however, this is rarely the case as yet. there is a small but growing number of trained ‘career’ researchers who identify as disabled, and this is increasing as access to education is improving globally, and therefore this is a career choice that has become possible. disabled people are now getting involved in a variety of participatory inclusive research and engagement activities, although this is still more common in high than middle or low-income countries (kuper et al. 2021). often these events are mediated through opd, although this should not be the only route to recruiting participants or co-researchers, as many disabled people are not members of these organisations and non-members’ views should not be excluded. additionally, there is still a tendency for people from the more stigmatised impairment groups (e.g. those with communication, cognitive, psychosocial and complex difficulties) to continue not to be invited into research spaces. there is even now some way to go before truly equitable participation is achieved (wickenden 2023b, wickenden & lopez franco 2021; shaw & wickenden 2022). several of the international disability focussed non-governmental organisations (ngos) have produced useful resources about inclusive practice (cbm 2012; light for the world 2017), although these are not focussed specifically on research. gradually, literature about including people from specific impairment groups is emerging, which is a positive sign. for example, there are studies about research relationships with people with learning disabilities (johnson & walmsley 2003; kahonde 2023; nind & vinha 2014; walmsley 2001) and about tackling stigma directed at this group (mcconkey, kahonde & mckenzie 2016). some authors have written about the successes and challenges of doing research with people who are blind or who have multisensory impairments (jaiswal et al. 2018; watharow & wayland 2022). the underlying motivation for the two studies described next was to be both participatory and disability inclusive in the research approach. research methods and design background to the two studies the two studies described were both research projects run in parallel and collaboration with multiple international non-governmental organisations (ingo) partners (sightsavers, humanity and inclusion (hi), leonard cheshire and sense international), carrying out intervention activities in relation to developing successful models for the roll out of inclusive education in kenya and nigeria. the two separate projects were part of a larger overarching programme funded by the uk government (fcdo) and the did programme. this comprises a consortium of ingos, research entities and opd, working together over six years (2018–2024), mainly in five countries in africa and south asia. the projects within this programme have focussed on trialling innovations in four different thematic areas (education, livelihoods, health and tackling negative stereotyping). however, the majority of the projects have focussed on aspects of inclusive education as this was a theme prioritised by partners within the countries (see inclusive futures, https://inclusivefutures.org). ethical considerations ethics protocols for both studies described here were submitted to the institute of development studies (ids) ethics committee (project no. pt/17012) and also in collaboration with our partners in kenya and nigeria to in-country ethics review boards (erbs) as appropriate. in both cases, particular attention was given to the extra risks, actions and factors that need to be considered when doing research with people with disabilities, as well as with children with disabilities who were involved as participants in both studies. the research team had a strong awareness of the specific risks and mitigations that might arise in relation to participatory, inclusive research and co-production processes (barke et al. 2020; carey & griffiths 2017). we see it as important to elucidate these points in ethics applications for two reasons: (1) to educate ethics boards as to the risks and benefits of including disabled people and disability issues in research, and (2) to ensure that the research team, consultants, peer researchers and project partners involved would be well informed and prepared to deal with any problematic aspects which might arise. our experience is that not detailing these aspects explicitly, can lead to erbs not approving disability related research for what might be regarded as the wrong reasons (e.g. overprotection, lack of recognition of disabled people’s agency and right to be heard, assuming that proxies’ views are good enough, etc). results example 1 – exploring perceptions of inclusion, as part of promoting disability inclusive early child development and education (ecde) in two counties in kenya the intervention project in kenya took place in the counties of homa bay in the west of the country, a fertile area on lake victoria and kakuma refugee camp in turkhana county in the arid north. the implementing ingos worked with a total of nine selected pilot mainstream primary schools to support them to enrol and support children with disabilities into their pre-school (ecde) classes. a range of different interventions were rolled out, including training for the teachers and parents, awareness-raising and advocacy in the community, and work with ministry of education staff and other educationalists nationally and locally. a quantitative study about children’s educational progress compared with control cohorts was also conducted. the qualitative research study described here aimed to explore in depth the experiences and perceptions of three types of participants (children with disabilities, their parents, and teachers). it explored their ideas about inclusive pre-school education at school and also aspects of inclusion in the community. (for detailed descriptions of the study, see wickenden, njungi & rohwerder 2023a, 2023b; wickenden, rohwerder & njungi 2022.) peer researchers as part of the team an innovative aspect of the study was working with nine peer researchers with disabilities recruited locally in collaboration with opd (six in homa bay, three in kakuma). they were five women and four men, and they had a mix of impairments (physical or visual impairment, and one was a parent of a disabled child). applicants were encouraged to apply by local opd, irrespective of impairment type; thus, this characteristic was not one of our criteria. they had a mixture of education levels and previous research experience, and were selected on a range of criteria including: knowledge and experience of activism about disability and inclusion and language skills. it was important to recruit a team who could between them speak all the local languages that might be needed as well as english. they were formally contracted and paid for their work on a daily rate as advised by the ingo team, as well as receiving various travel and subsistence allowances. they had online and face-to-face training in participatory research theory and practice. with the support of a kenyan research consultant and the uk team, the peer researchers then worked in small groups to run separate focus groups with children with disabilities, parents and teachers involved in the initiative. interviews were also undertaken with parents of children with more severe impairments who were on a home support programme run by sense international. the focus groups were held in the schools, and the interviews in family homes. the types of impairments that the children had were not a criteria for selection and were not under the researchers’ control, as it depended on which children had been admitted to pre-school classes and were available to participate on the day. research process there were two rounds of data collection, first near the start of the intervention, before many of the ingo-led project training and awareness activities had started and then about 15 months later near the end of these activities (2021–2023). the research was undertaken during the coronavirus disease 2019 (covid-19) pandemic; therefore, kenyan government guidelines and restrictions were adhered to. the recruitment of participants, briefing of schools and logistical arrangements were facilitated by the locally based staff working for ingos and by opds. the data collected were a combination of recordings of discussions, notes from the focus groups and interviews, visual materials, such as mind maps and drawings generated during the sessions and reflections from the researchers’ debriefs after each data collection event. these were written up by the consultant. the peer researchers’ personal reflections on the experience of being a researcher were also collected during online and face-to-face debrief sessions (written and video). they were also involved in reviewing and commenting on the various reports and published papers produced. they gave permission for their videos to be shown during live presentations and webinars. a participatory process was used to involve the whole team in thematic analysis of the data. round one was undertaken online with the kenyan consultant in person with the peer researchers. for the second round, the process was in person at the two sites with support online from the uk team. key themes were identified and were mapped and clustered. discussion generated some clear patterns across the two sites, with many noticeable similarities as well as some differences between them and across the two time points. a second round of detailed analysis involved uploading all the material to nvivo. the uk team and kenyan consultant then did a further thematic analysis to nuance the participatory analysis process and identify relevant quotes to provide supporting evidence. the children, parents and teachers all responded positively to the focus groups and interviews, and enjoyed having a chance to express their views and feelings. it was particularly noticeable that they were more forthcoming and talkative during the second round of data collection, when they were familiar with the approach, knew the peer researchers and had experienced more interventions, such as being in school and receiving training among others. the children, parents and teachers were not involved in analysis and publications processes. organisations of people with disabilities steering group committee members were involved in reflection on the key findings during their regular and final project meetings and other dissemination events. as this qualitative research was nested within a bigger project, the participants had the opportunity to be involved in various meetings at different time points and at the close. there was extensive discussion about next steps between local and national stakeholders, with the ingos running the interventions and follow on work is currently being considered. findings about the methods used overall, there was agreement among the parents and teachers that having the peer researchers facilitating the discussions and interviews was a good idea. it was inspirational for the participants to see that disabled people could work as researchers and it provided them with encouragement that disabled children could also aspire to such roles in the future. it therefore underlined the importance of access to education for the children. they did however also discuss some ways in which the education and support of disabled children could be improved. the peer researchers were very positive about the experience of working as researchers. their key points of learning were: had learnt skills which would be useful to them in the future: communication, qualitative research (including being inclusive, collecting data, analysis), organisational, teamwork, advocacy were more confident and informed about disability and inclusion greater understanding of families’ situations and of services available in the area increased sense of being activists and role models. example 2 – developing an inclusion checklist with disabled children and their parents as part of an inclusive primary education pilot in kaduna state, nigeria the intervention project in nigeria was called smile (support mainstreaming inclusion so all learn equally) and was led by ingo sightsavers along with a steering committee of opd and other experts in inclusive education in nigeria. six mainstream primary schools in kaduna state were supported with a variety of interventions to develop community awareness of inclusion, the schools’ inclusive practice and increase the number of children with disabilities enrolled. the project carried out a range of activities including: teacher and parent training, community advocacy, inclusive children’s clubs, work with national and state level educationalists, teacher trainers and ministry of education. the associated research project reported here aimed to use work alongside the intervention activities, using participatory inclusive methods to develop an accessible checklist in collaboration with some disabled children now attending school and their parents. this would ask children with disabilities themselves and their parents about their experiences of wellbeing and inclusion in school and at home. a local research team of two consultants with experience of disability or childhood research was recruited, along with two members of the smile steering committee (people with lived experience of disability) who acted as advisors. this team was given online training in the concepts of inclusion and disability, inclusive and participatory research and working with children. three-day participatory workshops were held separately for two groups of children with disabilities and one day sessions for their parents. the venues were two of the pilot schools, familiar settings for the children. through using a range of play based activities, trust was built between facilitators and participants. it was important to establish that this was different from school classes, there were no right or wrong answers, and children of different ages, genders and impairments worked together. after icebreakers and ‘getting to know each other’ games, and establishing some group rules, a series of fun activities were devised to investigate their views on what impacts wellbeing and inclusion at school and also in the community. care was taken to make sure these activities were inclusive of all and did not require literacy or verbal skills necessarily. creative and arts-based methods were used extensively. for example, a ball game as an introduction and a large flipchart sketch of a school and of a village were placed on the floor. the children then drew or wrote or put stickers on to show what was important in each place (e.g., the classrooms, the toilets, the village pond). they also indicated places they liked or didn’t like, and discussed why (using happy or sad stickers). everyone was given the time and space to express their views with the support of the team. topics arising from these discussions then became question items in the draft wellbeing and inclusion checklist. in the parents’ workshops, they discussed what inclusion of their children meant to them. they were asked to think about what questions they would ask another parent about their children’s school and home life. they generated a list and then role-played asking the questions to each other. the data from the workshops was thematically analysed and discussed in online whole team meetings. a list of 10 questions for children and 10 for parents was compiled, and a checklist format using emoticon faces on a 5-point likert scale was developed. the draft checklists were piloted in the same two schools but with different children and parents to evaluate how well they worked in assessing subjective experiences of wellbeing and inclusion. this was repeated after a year with revised version of the checklists, with the aim of revealing any change in the experiences of the children, given that various interventions had taken place in the meantime. views were sought from participants about the checklist after they had participated. the revised version was felt to work more successfully than the first one. changes included adding some extra questions, rewording some and adjusting the layout to make more space for respondents’ verbatim comments. however, further potential improvements were also identified. (for detailed description of the checklist development, suggested refinements and possible further developments, see wickenden, thompson et al. 2023a, 2023b). the feedback received from the children and the parents was that they enjoyed the design workshops, developing and completing the checklists. some parents reported that they had not had the opportunity to think and talk about their children’s school and home life before, and they appreciated this. the two consultants who had not worked on a project that was as participatory and inclusive as this one, reflected positively on the experience. they had initially been sceptical that it would be possible to engage the children in discussion about inclusion. they were not sure that they would be able to generate questions or respond to them. similarly, they were surprised that the parents, once they understood the task, responded very actively and were keen to contribute to designing the checklist for other parents. discussion benefits of participatory inclusive approaches overall then, our experience of using participatory and inclusive approaches with three groups—children with disabilities, their parents and teachers—demonstrates that all can be asked for their opinions, if this is done in a disability aware way with appropriate inclusive methods and adaptations. additionally, both children and adults with disabilities can be involved in research as collaborators and peer researchers if they are given appropriate training and support. making sure that the activities and methods used enabled the participation of all, albeit in different ways at different levels of complexity, is a fundamental principle. using ‘multi-modal’ methods was key (always using more than one communication method or mode, e.g., spoken words were accompanied by pictures, symbols or signs), children’s discussion was always accompanied by something for them to physically do or look at (e.g. using objects and pictures). there was a carefully planned mix of types of tasks; therefore, some were physically active and others less so. appropriate levels of help and support are also important, as disabled people (including children) often have specific views about how they are supported. they say that if they are not helped enough this excludes them, but if they are helped too much it is patronising and denies them agency. getting levels and types of support right is therefore absolutely essential to disability inclusive research. capturing the first-person perspectives of people with disabilities (whether children, adults or families) provides ‘real’ grounded data and allows subjective experiences to be revealed and recognised as important. this is humanising, demonstrating that a group of people who may be stigmatised and regarded as of reduced worth, have opinions on many topics just as others do. asking children themselves (even very young children) is also important, because they may have views that are different from proxies such as their parents, who are more often asked about their lives. parents may be surprised at what their own children say! doing research about disability in a participatory way underlines the relational nature of disability, demonstrating that a group of people often regarded as ‘the other’ can be related to in ordinary ways. some of the data that emerged in these two studies showed that the concerns of the children, parents and teachers were in many ways similar to those of others. for example, the children were worried about bullying and about lack of resources at school (lack of books, dirty toilets, which arguably non-disabled children might also mention), the parents had worries about safety, household finances and the future for their child. the teachers were concerned about needing more resources in school and more training, heavy workloads with many children in their classes and their own careers. thus, findings from disability focussed research can do three things. firstly, reveal disability-specific aspects that are different from others’ views and have not previously been known. secondly, it can demonstrate the ways in which people with disabilities’ lives and concerns are similar to everyone else’s and this is important in relation to people being accepted and understood. thirdly, it can illustrate the impact of endemic structural violence in communities and systems, when people tell stories of disadvantage and discrimination. there is then a possibility of righting epistemological injustice, as excluded groups’ perspectives are now recognised and their particular knowledge and experience becomes valued (danermark & coniavitis gellerstedt 2004; fricker 2007). in addition, not only will others understand disabled people better, but if, as was demonstrated with the peer researchers in kenya, a process of conscientisation takes place. they have then gained awareness, knowledge and insights which can lead to them developing increased advocacy skills and agency. this research was embedded in the local contexts and informed by in-country colleagues in kenya and nigeria. the building of relationships with participants and the data collection were led by kenyans and nigerians, respectively. the topic guides and activities were designed using a co-production approach, with many suggestions and adaptations being made by the consultants, peer researchers and opd advisors on both projects. although the funding and academic research leads were external (and outside africa), from ex-colonial contexts, effort and care were taken to ensure that the design, data collection, analysis and dissemination were as locally crafted and influenced as possible. however, it should be acknowledged that a power gradient between the overseas-funded academic researchers and the in-country consultants, partners and participants inevitably existed. the team tried hard to flatten this disparity, by modelling respect, affirmation and appreciation of everyone’s contributions. dilemmas and difficulties despite all the positive reasons mentioned above to do more participatory and inclusive qualitative research, there are some risks and cautionary tales to tell. there is, for example, always a risk of tokenism. inclusive practice that is not done with enough sensitivity, responsiveness to the needs of the participants, and enough resources can be as harmful as any other type of exclusion. it is important to make sure that the whole research team are well trained, sensitised and prepared to avoid this. asking someone what kind of support they need and then not providing it sufficiently is likely to cause frustration, mirroring previous exclusionary experiences and potentially perpetuating people’s feelings of being oppressed, abused and not being taken seriously. additionally, it is important when recruiting participants and introducing the project aims, to take care about how inclusion criteria are explained. it is possible to reify (bring into being) an identity that someone does not recognise for themselves, which may be upsetting or harmful. for example, young children with disabilities may not have identified themselves as different from their peers in this way (even if they have a visible impairment such as a mobility, vision or hearing difficulties). older children and adults may choose not to identify as disabled, although they have impairments. thus, the way that they are addressed when invited to join in could be hurtful and a revelation to them if not worded carefully. the approach used needs to be agreed among the team, taking into account local language and understandings, and the children’s previous experiences. a question remains about how people from the most marginalised impairment groups can be included more? it is common to see disability focussed research being done that does not attempt to include those at the bottom of a hierarchy of impairment. people with cognitive, communication and psychosocial difficulties are still to a large extent excluded, stigmatised and not engaged with (inclusion international 2006, n.d.). they are seen as difficult or expensive to include. this can be true even within disability rights focussed activities (allport 1954; deal 2003). there needs to be a concerted and intentional effort to develop the skills and confidence of researchers, ingos and opd, in including these more marginalised groups, both in interventions and in research (shaw & wickenden 2022). otherwise, their perspectives will continue to be unheard and their exclusion will continue (inclusion international 2006, n.d.). another dilemma is how disability can be more recognised as an aspect of identity, and therefore included in intersectionality debates and considerations. discussions about intersecting identities now abound, but still have a tendency to focus on race, gender and sexuality. disability as an identity is very often left out of the picture, despite people with disabilities commonly emphasising that their other identities are often as important as their disabled identity if not more and yet the combination (e.g. of being a woman and disabled) is crucial to understanding their situation and needs (wickenden 2023a). finally, there remains the wicked question of how we can achieve the inclusion of a disability lens in all research, that is, not just on disability focussed topics? ideally, all ‘mainstream’ research on any topic should by default be designed to include disabled people in its recruitment, whether qualitative or quantitative studies. we should see that the 16% of the global population who are disabled (who 2022) are proportionately recruited in any study populations, across the full range of sectors and areas of investigation. this would then be a major contribution to the aim of ‘mainstreaming disability into international development’. conclusion the unique aspect of this participatory disability inclusive approach is working with people with disabilities themselves, both adults and children, as participants contributing data about themselves, as well as research collaborators, alongside local employed ingo teams and opd partners and in co-production processes as far as possible. this was somewhat curtailed by the timing of the work being during the covid-19 pandemic. in both kenya and nigeria, we used a range of innovative, inclusive methods to gather data with children and adults. the activities were designed to ensure that everyone, whatever their impairments, ages, access needs or levels of education could join in and contribute their perspectives and experiences on the subject of inclusive education and wellbeing. it is significant that young children with disabilities participated in research about their lives. the studies show that including them is both possible and important to do. additionally, parents and teachers enjoyed being asked for and expressing their views. the team of peer researchers with disabilities working on the project in kenya felt more knowledgeable and confident as a result of being involved in the research. they had an increased sense that they were role models for other disabled people in their community and that their skills and status had been increased. research that is done in this participatory and inclusive way provides data that adds depth and nuance, and can potentially complement quantitative data in mixed methods studies. it sets out to answer why and how questions rather than just focussing on what works and what doesn’t. these approaches and methods have the practical potential to inform and could lead to interventions that are suggested and validated by the population in question. this is potentially empowering and emancipatory. acknowledgements the author wishes to acknowledge all who have been involved in the institute of development studies (ids) disability team’s work within disability inclusive development (did), namely the participants (children with disabilities, parents and teachers, organisations of people with disabilities (opd) members and others), host schools, peer researchers, sightsavers (in nigeria and kenya and internationally), other consortium partners humanity & inclusion, leonard cheshire international, and sense international, steering committees (including organisations of people with disabilities and other experts) for local support. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contributions m.w. declares that they are the sole author of this article. funding information the uk aid (foreign, commonwealth & development office fcdo) funded the did (inclusive futures) programme. data availability the data will not be publicly available. applications to view the data can be made on reasonable request from the corresponding author, m.w. disclaimer the views and opinions 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disability research production’, disability, handicap and society 7, 125–138. footnote 1. i am deliberately using this language interchangeably with ‘people with’ language with no particular connotation either way. ref disability rights uk, social model of disability: language. article information authors: mary wickenden1 diane mulligan2 gertrude o. fefoame3 phoebe katende4 affiliations: 1institute for global health, university college london, united kingdom 2sightsavers, united kingdom 3sightsavers, accra office, ghana 4africa centre for development impact correspondence to: mary wickenden postal address: 30 guilford st., london, wc1n 1eh, united kingdom dates: received: 25 july 2011 accepted: 06 july 2012 published: 03 oct. 2012 how to cite this article: wickenden, m., mulligan, d., fefoame, g.o. & katende, p., 2012, ‘stakeholder consultations on community-based rehabilitation guidelines in ghana and uganda’, african journal of disability 1(1), art. #1, 10 pages. http://dx.doi.org/10.4102/ ajod.v1i1.1 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. stakeholder consultations on community-based rehabilitation guidelines in ghana and uganda in this original research... open access • abstract • introduction    • problem statement       • aims of the study    • literature review       • background       • current developments       • background to the participatory consultation       • ingos’ role in cbr and in the participatory development of the new guidelines       • significance of the study • design and methods    • materials    • sampling    • setting    • design    • methods    • analysis • ethical considerations • discussion of results       • wider community engagement in the consultation process       • livelihoods and lack of opportunities       • the role of culture and religion       • gender       • hiv and aids, sex and sexuality       • involvement of pwds and capacity building       • collective responsibility versus leadership       • lack of infrastructure       • human resources       • beyond medical rehabilitation to rights-based approaches       • partnerships between groups and agencies       • strengthening legislation       • power and corruption • limitations of the consultation process • recommendations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references • footnotes abstract top ↑ background: the focus of this paper is the new broadened conceptualisation of community-based rehabilitation (cbr), which promotes the empowerment and inclusion of people with disabilities (pwds) in diverse ways within their communities. new guidelines for cbr were launched in october 2010 by who/ilo/unesco/iddc, and this paper describes part of the process by which these were produced using participatory approaches involving international non-government organisations (ingos) and local partners. the paper reviews the evolution of cbr and describes how grassroots consultation by ingos working with key stakeholders in the disability arena can influence policy on disability issues, and reciprocally how policy change can inform organisations’ practice and research activities. this ongoing bidirectional influence is illustrated with data from the participatory consultation process about the new cbr guidelines carried out by sightsavers in uganda and ghanaobjectives: to consult with key stakeholders in the disability arena in uganda and ghana, in order to gain their opinions and suggestions for improvements to the then draft cbr guidelines, as part of a wider global participatory process of consultation on the document. methods: the ingo sightsavers gathered qualitative data through focus group discussions and questionnaires in both countries. results: the participants’ critiques of the draft guidelines carried out in multiagency participatory processes were analysed thematically and fed back to the cbr guidelines editorial team. conclusion: the paper concludes that stakeholders in diverse communities can actively contribute to shaping policy and practice through participatory consultations. local and national government and non-government organisations and other key informants can inform the development of national and international guidelines and policies. this participatory approach can be successfully facilitated by ingos. in turn, these processes have prompted organisations to adapt their own policies and programmes in order to be more responsive to the local needs and concerns of pwds. introduction top ↑ community-based rehabilitation (cbr) for people with disabilities (pwds) has been reconceptualised, and in recent years has moved to a cross-sectoral ‘social’ or ‘inclusive development’ model and away from a predominantly health focus. this paper describes part of the process of development of the new who/ilo/unesco/iddc cbr guidelines launched in abuja in 2010. initially, it reviews the evolution of cbr from its earliest formulation to its present reconceptualisation as a framework and tool for inclusive development. it explains the principles underlying the new approach to cbr and how this links with the implementation of the un convention on the rights of persons with disabilities (uncrpd). it then describes two examples of the process of participatory consultations, led in this case by an ingo with local partners in uganda and ghana. it summarises the findings and discusses the ways in which ingos can contribute both to the formulation of policy and the translation of this into practice, through participatory approaches. problem statement the gradual development of a new conceptualisation of cbr over the last decade was felt to require new guidelines to facilitate understanding and implementation of the strategy which aims to promote inclusive development. disability-focused ingos have been involved in the development and field-testing of the guidelines and in facilitating consultation processes worldwide. this is a new collaborative way of generating policy and practice documents and of ensuring that programmes and projects are well matched to the needs of stakeholders in the disability arena in their diverse community settings. this ambitious type of large-scale participatory process involving stakeholders globally has not been attempted before in the disability arena. aims of the study the aim of this paper is initially to provide an historical overview of the origins and evolution of cbr in order to put the development of the new concept and guidelines in context. then the paper describes the process and outcomes of the consultation led by the ingo sightsavers in uganda and ghana, which contributed to the broader global participatory process of writing the cbr guidelines. literature review this overview summarises the history of cbr from its inception to the present day. it describes the key ideas and initiatives which have influenced cbr’s development as a strategy. it discusses the current conceptualisation, its underlying principles, links with the un convention on the rights of persons with disabilities (2007), the perceived need for new guidelines and their development using participatory methods. background the last four decades have seen dramatic changes in conceptualisations of disability and in how citizens, civil society groups, service providers, government and ngos perceive their contribution to ensuring the wellbeing of pwds.1 early approaches conceived disability as an almost exclusively health-related issue. two early who expert committees on medical rehabilitation emphasised rehabilitation as an essential component of healthcare (who 1959, 1969). countries both in the global ‘north’ and in the ‘south’ adopted conventional institutional systems of service delivery for pwds through mainly urban rehabilitation centres and ‘care’ homes. in 1978, the alma ata declaration, ‘health for all’, obliged governments to consider rehabilitation in national plans for comprehensive healthcare. in light of these principles, in parallel with the concept of primary healthcare and in response to the lack of specialised medical rehabilitation services for pwds in low income countries, the who began to articulate the concept of community-based rehabilitation (cbr) (helander 1993, boyce et al. 1997, stone 1999, finkenflugel, wolffers & huijsman 2005). the aim of cbr is to ensure that rehabilitation services are provided to all pwds, living in urban and rural settings and regardless of age and socio-economic status. this involves actions in the community using and building upon local resources as well as drawing on specialised secondary and tertiary services as appropriate. gradually, the who recognised that most basic rehabilitation activities can be provided for people with disabilities in their own communities, using local resources and alongside primary healthcare, as well as other sectors. fundamentally, the focus of cbr was on training people to carry out daily activities within their family and home contexts, participate in community activities, play and attend school or work. it emphasises using local resources and ‘low tech’ expertise available locally, rather than ‘high tech’ specialist services which are often not well adapted to the context, and are expensive or unavailable. echoing primary healthcare’s community health worker model, the cadre of staff who facilitate cbr by supporting and training pwds and their families are cbr workers. after a short period of training (usually 3 to 6 months), they typically work within a limited geographical area or with a predetermined number of families, have access to information and support from a managing organisation or team, and may be either paid or voluntary. to facilitate their work and that of their managers, who published a cbr manual, ‘training in the community for pwds’ (helander et al. 1989). this took several years to develop, including the field-testing of draft versions. the manual consists of 34 modules: four guides and 30 training packages. these targetted local supervisors, community rehabilitation committees, pwds and school teachers. the training packages were aimed at cbr workers and others who support people with a range of impairments (e.g. physical, intellectual, sensory, behavioural) and their families. the manual has played an important role in the promotion of cbr and in improving the quality of life of pwds in the global south. it has been translated into over 50 languages, and is still used widely today. however, during the 1980s, several key international initiatives and declarations served to reinforce the move of the cbr discourse away from purely medical model approaches focusing on the impairment and towards social and rights-based approaches. key initiatives were: the world programme of action concerning disabled persons (un enable 1982), the united nations’ standard rules on the equalisation of opportunities for persons with disabilities (un 1993) and the united nations decade of disabled persons (un enable 2006). increasingly, disablement was seen not just as a health issue but as a social one. these initiatives played a significant role globally, in promoting equalisation of opportunities and dignity for pwds, and drove new domestic legislation in many countries in this direction. furthermore, pwds themselves increasingly demanded more active involvement in the planning of strategies and policies that affected their lives. disabled people’s organisations (dpos) began playing significant roles in cbr initiatives and policymakers started to recognise the important roles pwds themselves, their families and organisations could play in the quest for equality and human rights. despite these encouraging early signs of change, the prominence of ‘medical model’ discourses, which focus on what is different or ‘abnormal’ about the disabled person and seek to remediate this in the style of curative medicine, continued during the 1980s. however, in the usa, uk and elsewhere, radical shifts in thinking about the nature of disability were occurring (swain et al. 1993, oliver 1996, barnes 2003). these then attributed the disabled person’s predicament not to their physical or psychological difference (impairment), but to society’s exclusionary and stigmatising treatment of them (fine & asch 1988, shakespeare 1994). this much more politically aware and rights-driven ‘social model’ has spread globally and there has been a gradual shift towards using versions of this model to inform the provision of services across sectors including health and education, but also in law, social protection and employment. subsequently, who developed a new framework to describe the important factors and relationships in disablement, the international classification of functioning, disability and health (icf) (who 2001). this responds to the criticism that previous models had focused unduly on the nature of the disabled person’s individual (e.g. physiological, anatomical, psychological) differences (impairment) in comparison to a supposed ‘normal’ ideal. thus disability has gradually separated itself distinctively and importantly from illness. although not universally accepted, and criticised for still being too ‘medical’, the icf model was innovative in attempting a more clearly multidimensional view of pwds’ situations. it thus set out to take account of political, socio-economic and environmental influences on their lives. there was recognition that medical approaches to rehabilitation which tend to focus on solely on cure and restoring ‘normality’ were unsatisfactory and that a comprehensive and holistic approach to pwds’ needs was required. however, although shifting, the dominance of impairment-focussed ‘medical’ or individual models often still prevail today. a global consultation in finland in 2003 reviewed the progress of cbr in its 25th year with a broad caucus of stakeholders. organised by who/ilo/unesco, it involved international organisations of and for pwds and ingos working in the cbr field. the most notable recommendations were to: • promote cbr as a part of wider poverty-reduction strategies • adopt a multi-sectoral approach and involve dpos in cbr • work to make disability part of international, regional and national agendas, e.g. through poverty reduction strategy papers (prsp); millennium development goals (mdgs) and the new partnership for african development (nepad). to highlight these, the joint un organisations updated the cbr joint position paper (ilo/unesco/who 2004:2) and redefined cbr as: ‘a strategy for rehabilitation, equalisation of opportunities, poverty reduction and social inclusion of people with disabilities.’ the purpose was to promote human rights and a call for action against poverty, which was increasingly being recognised as often both causative of and resulting from disability (dfid 2000) the paper recognised that cbr is an effective strategy to meet the needs of pwds. it noted that cbr needs to be implemented through the combined efforts of pwds themselves, their families, organisations and communities, as well as the relevant governmental and non-governmental health, education, vocational, social and other services. indeed in many low income countries, ministries of health and ngos have come to play a vital role in promoting cbr. however, despite widespread anecdotal evidence that cbr is effective, the issue of large-scale, meaningful and comprehensive evaluation of it does remain problematic (wirz & thomas 2002, cornielje, velema & finkenflugel 2008). as cbr has evolved, it has not been without its critics, who suggest variously that it is: unworkable, overambitious, unrealistic or tokenistic in relation to, for example, empowerment issues (miles 1989, 1996), or because of its reliance on volunteers or its financial unviability (stone 1999), and that it is a second-rate solution or indistinguishable from community development (lang 1999). although cbr is practiced in over 90 countries and is part of many national strategies, most programmes continue to follow a ‘vertical’ approach, focusing on one or two domains of life. for example, many focus on health alone, sometimes exclusively on physical rehabilitation. others focus only on education or income generation. however, the single domain approach does not adequately address the multi-dimensional needs of pwds and does not attempt to address the structural and societal exclusion they experience. in order to ensure the relevance of cbr for pwds, their families and the communities in which they live, it is now recognised that it must adopt a multi-sectoral comprehensive approach, addressing the key domains (or components) of well-being. the cbr joint position paper promoted multi-sectoral and rights-based approaches, and importantly also focused on poverty reduction. however implementing such a multidimensional approach is complex (barron & amerena 2007). it was felt that putting the policy into practice required some guiding principles. the cbr joint position paper thus identifed a need to develop ‘guidelines’ for implementation of cbr (ilo/unesco/unicef/who 2004). the un agencies agreed to develop these, with full collaborative stakeholder engagement. ingos have played a major role in this process, as will be described below. also globally significant in the promotion of the rights of pwds to equal recognition and participation, is the recent un convention on the rights of persons with disabilities (uncrpd) launched in 2006 (un enable 2006) and now signed by the majority of countries. this groundbreaking document produced with a participatory spirit, in collaboration with an international group of pwds, promises to encourage and reinforce broader, more inclusive policies concerning and attitudes to all pwds. links between the uncrpd and cbr are therefore expected to be close and crucial for the success of both. the new conceptualisation of cbr can be seen as a potentially powerful and effective tool for the implementation of the uncrpd, especially in middle and low-income countries. current developments the new cbr guidelines were drafted by the un agencies, supported by 13 international ngos and dpos through the international disability and development consortium (iddc). over 150 experts from diverse regions contributed and the draft was field tested in 25 countries (khasnabis & heinicke motsch 2008). cbr is now conceived as having five major components: health, education, livelihood, social participation and empowerment, and these form the main chapters in the guidelines. in addition, there are sections on management of some special scenarios which are easily overlooked and which cbr needs to embrace including: hiv and aids, leprosy, mental health and crisis situations. communities clearly vary – in terrain, demography, culture, political systems, socio-economic conditions and many other factors (ingstad & reynolds whyte 1995). therefore, there is no definitive model of cbr appropriate for all contexts. however, cbr programmes do have commonalities and there is a need for some basic principles to guide all and for a universal framework which will encourage and reflect a truly comprehensive multi-sectoral approach. to promote a holistic model of cbr, further work by groups of agencies working together was done to identify the key elements or sub-domains of the five key components, and this has resulted in the development of the ‘cbr matrix’ (figure 1). figure 1: cbr matrix (who 2006). the matrix represents the domains which an effective cbr programme may need to consider, facilitate and or address directly, depending on local circumstances. it illustrates the sectors which combine to form a multi-sectoral cbr strategy. there are potential links both vertically and horizontally between these various suggested areas of action and focus. although far from perfect, this model was arrived at through a consensus approach after consultation with a variety of actors.current thinking outlines that the goal of cbr is to facilitate and enable inclusive development and inclusive societies for pwds. it focuses then on using mainstream local means and initiatives to promote wellbeing and life with dignity, such as healthcare from existing health facilities, education in regular schools and colleges, livelihood through traditional skills and local employment, income generation programmes, microcredit, inclusion and participation in local initiatives and community life. thus the concept of ‘rehabilitation’ has been expanded from its previous clinical and impairment focus and is now seen to addresses all aspects of pwds’s lives within their communities. cbr is designed to consider the needs of pwds of all ages, so that families with a young disabled child are supported through early child development and inclusive education initiatives, whilst adults benefit from social, livelihood, citizenship and justice-focused activities. there is increasing recognition that poverty and disability are inextricably linked, although the exact nature of this relationship is still unclear (coleridge 2007, grech 2010, barron & ncube 2010). therefore, many components of cbr aim to improve the economic wellbeing of pwds. the formation of self-help groups (shgs) and or disabled people’s organisations (dpos) needs to be at the centre of the cbr strategy as described in the guidelines, to enable pwds to gain equal access to mainstream opportunities (hartley 2006). the draft cbr guidelines aim not to be prescriptive. they contain a range of experiences and real examples to promote and illustrate an up-to-date, practical strategy. ways are suggested to achieve these aims through local initiatives that focus on inclusive development. the key approaches are to: • meet basic needs and reduce poverty • build capacity • create opportunities for livelihood, health, rehabilitation, education and social life • involve dpos or facilitate pwds to organise themselves • collaborate across sectors in partnerships • involve the whole community • involve local government and leaders • use the legislative, judicial and political systems. the consultation process described below aimed to seek the views of stakeholders in the disability arena to ascertain their responses to the draft document and whether it was achieving its aims, and to gather suggestions for improvement before the final version was developed. background to the participatory consultation the process of developing the new cbr guidelines was conceived as an exercise in multi-stakeholder cooperation initially, a concerted effort was made to develop consensus on the cbr concept, its various components (domains) and elements (sectors). various stakeholders including un agencies (ilo/unesco/who), representatives from member states, academics, ngos, dpos, professionals’ organisations and cbr experts met to finalise the outline of the guidelines and agree upon a common agenda called ‘inclusive development to promote an inclusive society.’ it was agreed that cbr must use the principles of community action to ensure equality of access across sectors. special efforts were made to ensure sufficient participation of pwds, cbr practitioners and experts from the global south in the consultation process. thus the development and field-testing of the guidelines has been a participatory process. approximately 30 cbr programmes in 25 countries contributed by reviewing the draft document. feedback from this process was incorporated into the final edition and has provided critical analysis of the framework for cbr from a grassroots perspective and highlighted practical examples of good practice. the data reported here are from the consultation process in ghana and uganda that was facilitated by sightsavers, an international ngo. ingos’ role in cbr and in the participatory development of the new guidelines many ingos contributed to the process of developing the guidelines. we will describe the consultation facilitated by sightsavers. like many other disability-focused ingos, sightsavers, until recently, adopted vertical approaches, with a major focus on health interventions and an additional limited focus on primary education. its work has traditionally been focused on eye healthcare, with smaller programmes for irreversibly visually impaired people to deliver daily living, orientation and mobility skills, or provide assistive devices. however, the helsinki review (who 2003) and the revised joint position paper (ilo, unesco/unicef/who 1994) provided sightsavers with a new framework, and in 2005 the organisation wrote a new internal cbr policy aligning its work within human rights, social inclusion and comprehensive approaches to inclusive development.alongside other ingos, sightsavers has been a major stakeholder in the development of the cbr guidelines, bringing considerable practical experience to inform their development. in sightsavers’ particular case, their involvement has been as the lead author on the ‘social’ component, and as a member of the education component team. in uganda and ghana, sightsavers’ cbr programmes in collaboration with local organisations have used the original cbr manuals (helander et al. 1989) extensively for many years. for example, sightsavers assists with the funding of a degree course in cbr at the university of education, winneba, in ghana, many of the modules of which were based on the 1981 manual. however, after a review in 2007, the course now reflects a more human rights-based approach to cbr, in addition to impairment-specific aspects. here the need was very clear for an updated and reconceptualised set of guidelines about cbr. in line with this new broader approach to disability and a participatory, human rights approach to cbr, sightsavers were pleased to contribute to the production of the cbr guidelines by facilitating the consultations in uganda and ghana as described below. significance of the study this paper is timely and important as it describes part of the process of development of the new who/ilo/unesco/iddc cbr guidelines launched in abuja in october 2010. it reviews the evolution of community-based rehabilitation (cbr) from its earliest formulation to its present reconceptualisation as a tool for inclusive development. it explains the principles underlying the new approach to cbr and how this links with the implementation of the uncrpd. it then describes the process of participatory consultations led by an ingo with local partners in uganda and ghana. it summarises the findings and discusses the ways in which ingos can contribute both to the formulation of policy and the translation of this into practice, through participatory approaches. the authors represent academia, an ingo and local partners in the two participating countries. design and methods top ↑ materials materials used were draft versions of the guidelines and a semi-structured questionnaire and relevant documents for review. sampling participants were recruited purposively through local networks in order to achieve as broad a spread of stakeholders as possible, representing a range of demographics, interests and experiences. participants in both countries included: representatives from un agencies, dpos, ingos and local ngos, healthcare professionals, local government officials, itinerant teachers, academics and students from a cbr course, cbr personnel, pwds, parents of disabled children, and religious and traditional leaders. in ghana, 30 participants representing 17 organisations attended two national meetings in accra, and approximately 300 people attended regional events. in uganda, 55 stakeholders were invited and 48 participants from a range of backgrounds and organisations attended. setting participatory consultation about the draft guidelines in ghana and uganda took place in the capital cities, accra and kampala respectively. in ghana, two events took place in accra, and subsequently nine events were held regionally. in uganda there was an initial large plenary meeting and subsequently, over three days, smaller group meetings were held to critique the draft document in detail. a final plenary was held to summarise the groups’ findings. design this qualitative process of consultation was facilitated by sightsavers staff in both countries and was essentially phenomenological in approach, drawing on the broad range of experiences of the participants and grounded in practical realities. methods methods included focus group discussions about the draft guidelines and other locally relevant documents, the generation of case studies and completion of semi-structured questionnaires, which prompted feedback and suggestions for changes. most of the discussions took place in english, although as the sightsavers facilitators were local staff, they were able to translate and make notes in the local languages where necessary. participants worked in groups to review and comment on each section of the draft guidelines. analysis fieldnotes, transcriptions from the discussions and written material from the questionnaires formed the data presented here. this has been analysed thematically, initially by staff in the two fieldsites, and then a refining, clarifying and summarising process was undertaken by the authors (may 2011). ethical considerations top ↑ the purpose, processes of the consultations and the methods to be used were explained verbally to the participants in advance. it was clear that participating in the consultation would have no implications for individuals or organisations, in relation to receiving services or involvement in future activities. the participants understood that information supplied would be used by third parties but that their individual contributions would be anonymous and that their comments and opinions would be presented as grouped data from their respective countries. the transcribed data were managed and stored securely by sightsavers and by the who. discussion of results top ↑ the findings of the analysis and related discussion are presented thematically here. thirteen main themes emerged from the two field sites. contributions from the two countries are presented together, although specified as to source where relevant. unfortunately, verbatim quotes are not available for use in this paper and material from the different sources has been combined to present a coherent whole. commentary and critical interpretation by the authors where relevant follows the country examples in each section.participants from both countries made rather similar general comments about the readability, clarity and usefulness of the document. they suggested that it was too long and detailed in places, that there was repetition, some difficult technical language and that a shorter ‘pocket’ version should be considered. they asked for ‘clearer definitions’, ‘more explanation’, ‘simpler language’ and ‘more examples’. the ugandans wanted the guidelines to be more ‘prescriptive’ in places and with more practical ideas about implementation. wider community engagement in the consultation process ghanaian participants thought that the consultation process should also have included opinion leaders and the wider community, in order to compare their responses with the outputs from the disability specific stakeholder focus groups so that wider, more practical approaches might be obtained. linked to this, difficulties have been encountered in implementing cbr programmes because of lack of cooperation from the community members, persons with disabilities and their families. the challenges faced by local cbr personnel are often in engaging people to volunteer their expertise, skills and knowledge. some of the solutions offered in this consultation included:• building partnerships with people and organisations providing business development facilities because a cbr programme is interdisciplinary, multi-sectoral and cross cutting • including everybody to achieve the set objectives. the groups thought that the guidelines would give cbr workers insight about where, when and how to work with pwds, especially about building partnerships with mainstream organisations. more broadly, ugandan participants suggested that cbr networking nationally and globally should be elaborated upon. similarly to the ghanaian comments above, they mentioned the need to create linkages between cbr, pwds and all other social networks and community and development initiatives. the ugandans also highlighted that people with some specific impairments were not adequately considered, for example, those with visual and hearing impairments, albinism and mental health difficulties and older people. they wanted more content about the needs of specific impairment groups. this is an interesting finding, as there is a small body of literature, and more anecdotal evidence, that there are varying levels of exclusion and stigma across the different impairment groups, and also that there is often discrimination by some specific impairment groups towards others. thus those who have physical or visual impairments are typically less excluded than those with cognitive, communication, behavioural or multiple impairments (deal 2003). it is regarded as challenging in policymaking, inclusive development and in research to include these latter groups in ways which are not tokenistic and do not reinforce a potential hierarchy of exclusion across impairment groups. livelihoods and lack of opportunities in ghana, the view was that pwds are expected to accept any job without complaint, the perception being that they should be grateful for this. in low-income countries, scarcity of jobs is an issue for all unemployed people, disabled or not, and thus it is difficult for pwds to compete in the job market. participants felt that pwds needed greater skills diversity, solidarity building, self confidence and the ability to speak as a united group on employment and skills issues. ugandans explained that the needs of pwds as consumers of goods and services are often emphasised, whereas suppliers and providers also need to be made aware of disability issues in order to be able to provide equitable services. the role of culture and religion in ghana, the guidelines were judged to be culturally sensitive because the use of traditional medicine and herbal treatments were documented. participants reported that they would largely use non-formal mechanisms for addressing grievances, because disability issues raised in official circles are subject to deeply ingrained societal stereotypes. it was felt that cbr workers needed to be able to analyse their local environments and cultural aspects carefully before suggesting interventions in such sensitive matters. for example, in most christian communities, animal husbandry involving fowls and pigs would be successful, but in muslim communities, suggesting the rearing of pigs would be inappropriate. it is important that communities themselves decide what is good for them. after much deliberation, it was agreed that religion and culture played a major role in perpetuating expectations that pwds should accept their impoverishment as divinely ordained and that many could not imagine a life different from their present one. this was attributed to strong cultural beliefs in most parts of the community that the birth of a disabled child is viewed as a curse. this in turn may hinder the development and inclusion of the disabled child in mainstream community life. in uganda, the potential cultural appropriateness of the guidelines was also highlighted. for example, the practice of children taking care of younger siblings was felt to be important. however, it was felt that catering for unique groups such as nomadic peoples and refugees and their specific ways of life need to be more thoroughly addressed in the guidelines. the issue of cultural rights to variation in practices also needed greater clarity in the guidelines to aid understanding. gender the ugandan team observed that in the guidelines gender issues are focussed on women instead of on power dynamics between women and men and that gender should be addressed more clearly throughout the document. in ghana, they highlighted that the notion of marginalisation is not peculiar to disabled women alone, but rather a phenomenon associated with women generally. they suggested that this issue could be dealt with as a human rights violation. hiv and aids, sex and sexuality in ghana, the groups highlighted the issue of hiv and aids education for pwds, and they raised the lack of cooperation from health personnel in receiving training about these issues in some cases. the ugandan team felt strongly that sex and sexuality need to be clearly addressed under the hiv and aids section of the guidelines. a stronger message about the needs of pwds to access mainstream hiv and aids services was suggested, and the issue of hiv and aids sometimes being causative of impairment was raised. involvement of pwds and capacity building groups in both countries welcomed the importance given to communicating with and involving pwds, particularly in relation to their communities and families. it was noted that this was missing from the original who cbr manual (helander et al. 1989). the ugandan team argued that an emphasis on the disabled person being at the centre of processes could be put even more strongly, so that they were an active participant rather than passive recipient in cbr. they felt that the roles of children and youths with disabilities were not given enough emphasis. instead adults seem to be the category most targeted for increased participation in community activities and programmes. interestingly, this criticism, of lack of sufficient attention to the needs of children, has also been made of the un convention on the rights of pwds (un enable 2007). in addition, one of the key concepts considered missing in the ‘empowerment’ component was ‘counseling and guidance’. this was considered by participants to be essential in order to help pwds to overcome the emotional and psychological effects of their impairments and to achieve confidence and self esteem and in turn to enhance group solidarity and dignity amongst persons with disabilities. this has also recently been raised as an issue in the disability literature, though not particularly in developing country contexts. it is recognised that the psychological effect of discrimination and exclusion on pwds can be serious and long-lasting, even in contexts where more visible physical or structural and political barriers have to a large extent been removed (reeve 2006). both groups wanted to see greater emphasis on the importance of pwds as role models. participants agreed that when they have been active as role models in their respective communities and in cbr programmes this has really helped change the mindset of other pwds in the community, as well perhaps as the attitudes of non-disabled people around them. collective responsibility versus leadership within the self-help groups (shgs) component, the development of leadership skills for all with disabilities was seen as a key element. however, the ugandan team thought that a careful balance was needed between developing the skills of individual leaders and building the capacities of all members of shgs and dpos. it is important that these groups become empowered as a whole, rather than relying solely on key individuals.participants felt that self-help groups should develop on the basis of common needs and problems faced by disabled members in order to achieve collective responsibility and solutions. the participation of all in developing the group will ultimately lead to increased visibility of pwds within the community and in turn to the development of individual members’ competencies and confidence. lack of infrastructure the ugandans saw lack of infrastructure and accessibility as a challenge to cbr programmes, especially mentioning roads and transport. this presents a real barrier to reaching target groups for both service providers and users because pwds are geographically dispersed and may be isolated. they felt that these issues were largely overlooked in the guidelines. human resources some of the rehabilitation activities listed in the guidelines were perceived by the reviewers as specialised treatment requiring expert knowledge. as a result of the african ‘brain drain’ of healthcare professionals, some specialists are simply not available(patel 2003). in ghana for example, developing local expertise in working with people with severe developmental impairments has always proved difficult, even at the national level. most general healthcare professionals do not receive training on disability issues, partly due to lack of funding, and partly to lack of political will. healthcare course curricula were perceived as difficult to influence and change. participants commented that the lack of adequate budget allocations at a local and national level was not addressed by the guidelines. similarly, the ugandans said that the role of professionals in supporting cbr needed addressing and additionally that discussion about the role of volunteers and volunteering was also absent. in both countries, it was felt that both human and financial resources are lacking to support cbr. beyond medical rehabilitation to rights-based approaches both groups welcomed the shift in the debate towards pwds as rights holders and they underlined the benefits of human rights discourses and sustainable approaches. however, some participants reported that the concept of the rights-based approach was not clear. in africa, in particular, it is also important to promote a move away from charity models, especially since many cbr programmes have been started by the churches. the ghanaian team highlighted the omission in the guidelines of discussion about sensitising religious leaders about the importance of early childhood education for children with disabilities. partnerships between groups and agencies the ghanaians recognised that at community level, partnerships between dpos and cbr personnel were very important, especially in relation to provision of rehabilitation aids and appliances. dpos are able to promote the sustainability of cbr through their ongoing involvement and participation. they also saw dpo partnerships with government as crucial, for instance in developing flexible educational curricula which are responsive to disabled children’s needs. beyond education, the ugandan team stressed the role of governments as key implementers of cbr programmes and that partnerships between healthcare centres and dpos were essential: for example, a participant who is the coordinator of an eye hospital unit commended the collaboration between the cbr programme and the unit. he reported that the cbr programme contributed a great deal to making outreach programmes successful and also getting clients prepared for both consultations and surgery. additionally, cbr could be important in sensitising pwds to register with the national health insurance scheme to access better healthcare. strengthening legislation in ghana, it was felt that various district assemblies could be active in strengthening existing domestic legislation to ensure inclusion of pwds in all sectors of the economy. the ugandan team would like further guidance on how to link cbr to the uncrpd.these contributions illustrate that many of the principles and key concepts in the cbr guidelines reflect the principles and provisions of the uncrpd (un enable 2007). undoubtedly, the guidelines will become an important tool for implementing the convention at the local level. as the groups in both countries hint, current legislation produces numerous institutional barriers. dpos could serve as pressure groups to lobby governments who are not immediately willing to harmonise domestic legislation with the crpd. the cbr guidelines have clear statements that can help promote respect for the persons with disabilities, and linkages between dpos could build bridges between local, district, national, regional and international policy. power and corruption both countries agreed that, as stated in the guidelines, political structures are very powerful. some of the suggested activities in the draft document were considered controversial, given the political affiliations of some opinion leaders. they opined that since almost every decision made by political leaders affects local people, and that people with money often influence these leaders, subsequent decisions are not likely to favour the situation of persons with disabilities. thus, underlying structural issues in many cultures may prove to be very challenging barriers to the development of real inclusivity. limitations of the consultation process top ↑ as the participants were purposively sampled using the networks available to the field staff working with sightsavers and other related programmes, it is possible that those participating did not represent the whole range of views which might have been held about the draft guidelines. those who contributed were those who were able to come to the consultations. others who were not able to attend because of lack of resources (time or money), access difficulties or for other reasons may have had different views. additionally, group discussions are known to be more effective in collecting consensus data rather than individual opinions (krueger and casey, 2000) and it is possible that those with dissenting views may not have felt able to express these. recommendations top ↑ there were a number of broad issues raised by either or both groups, which they suggest need further coverage throughout the guidelines or more specifically in other documents. these included: how to get started in cbr, detail on implementation, training and capacity building for pwds themselves and or cbr workers, the need for further research, issues around scaling up and countrywide coverage, sustainability of programmes and cbr’s role in prevention of disability. conclusion top ↑ a process of stakeholder consultation with a broad range of interested parties was facilitated in order to critique the draft version of the who/ilo/unesco/iddc cbr guidelines through a participatory process facilitated by an ingo working with local partners in uganda and ghana. qualitative data from this process were fed into the broader global consultation and thus contributed to the writing of the final version of the document.the draft guidelines were also peer reviewed by cooperating universities and external experts, and the final cbr guidelines were published in october 2010, and their distribution globally in various languages and formats is currently in process. a concerted effort has been made to ensure broad ownership of the document and to develop it as a practitioners’ document for cbr managers. the momentum that has been created through this process will continue to grow. further occasions for cooperation and knowledge sharing and additional opportunities for working in alliance across the spectrum of individuals and agencies are already being discussed and considered. one of these opportunities is to use cbr specifically and explicitly as a tool to implement the uncrpd at grassroots level. we conclude that key stakeholders including pwds’ organisations and other key local stakeholders in developing countries can play a role in shaping public policy. these groups can use their own local experiences to inform and develop domestic and international policy in order to promote and secure the rights of pwds. they can be assisted in these participatory processes by a number of other agencies, including international ngos. sightsavers has launched a strategic plan 2009–2013 that has three out of four overall goals which can be located within the cbr guidelines and are aligned with the un crpd. we have demonstrated that the process of developing the cbr guidelines has used the experience of sightsavers’ and other ngos’ programmes to inform its content and ensure relevance in african contexts. sightsavers’ grassroots research has been a means to influence policy on disability issues, and in turn, policy dating back to the helsinki meeting has changed and informed sightsavers’ research and practice. the cbr guidelines are an important step forward in promoting cbr as an inclusive development strategy. poverty is often the major barrier in improving inclusion and quality of life, accessing healthcare, education, housing, justice and other services. accordingly, cbr will need increasingly to focus in cross-sectoral ways of improving access to basic human rights, working for the full inclusion, participation and wellbeing of pwds. the new cbr guidelines focus on meeting basic needs for pwds, accessing the benefits of mainstream developmental initiatives, and empowering pwds and their families. they implicitly move disability away from its historical location solely within health to other sectors and encourage the implementation of the uncrpd using community based initiatives. ingos working in the disability sector have moved their approaches in response to and in parallel with these changes. cbr must increasingly operate as a rights-based and inclusive development strategy in order to ensure that the benefits of broader, mainstream development initiatives reach pwds and their families. the new guidelines are an important tool to facilitate this strategy. acknowledgements top ↑ we would like to thank all the stakeholders in both uganda and ghana for participating in the validation and field testing of the who/ilo/unesco/iddc cbr guidelines in an open and constructive manner. in particular, we would like to thank david botwey in ghana for his role in facilitating the process, as well as our local partners for hosting the events. competing interests the research was funded by sightsavers. d. mulligan has been involved in the authorship of the current who/ilo/unesco/iddc cbr guidelines. m. wickenden was involved in reviewing selected sections of the draft guidelines. authors’ contributions d.m., g.f. and p.k. conceptualised and designed the research, decided on the methods, and managed the process in the field sites. gf and pk interpreted and analysed the ghanaian and ugandan data respectively. d.m. wrote a first draft of the report. m.w. contributed to the later stages 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4s. world health organisation technical report series, no. 419, who, geneva. who, 1978. international conference on primary health care, alma-ata, ussr, 6–12 september 1978, http://www.who.int/hpr/nph/docs/declaration_almaata.pdf who, 1989, who training manual on cbr training in the community for pwds, http://www.who.int/disabilities/publications/cbr/training/en/index.htm who, 2001, international classification of functioning, disability and health (icf), world health organization, geneva, http://www.who.int/classifications/icf/en who, 2003, international consultation to review community-based rehabilitation (cbr), viewed 16 october 2011 from http://www.whqlibdoc.who.int/hq/2003/who_dar_03.2.pdf who, 2006, cbr matrix, viewed 1 july 2011, from http://www.who.int/disabilities/cbr/matrix/en/index.html wirz, s., & thomas, m., 2002, ‘evaluation of community-based rehabilitation programmes: a search for appropriate indicators’, international journal of rehabilitation research’, 25, 163–171. http://dx.doi.org/10.1097/00004356-200209000-00001, pmid:12352169 footnotes top ↑ 1. we prefer the term ‘pwds’, which reflects the social model of disability and the language adopted by the disability movement in the united kingdom. this terminology is preferred because it is believed that societies disable people, not that disablement is an inherent part of the person. the term people with disabilities (pwds) is used extensively in developing countries, and we do not intend to undermine this concept or people who favour this concept. abstract introduction methods results discussion limitations recommendations conclusion acknowledgements references about the author(s) tasneem hartley division of physiotherapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa department of physical therapy and rehabilitation science, college of health sciences, qatar university, doha, qatar marlette burger division of physiotherapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa gakeemah inglis-jassiem division of physiotherapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation hartley, t., burger, m. & inglis-jassiem, g., 2022, ‘post stroke health-related quality of life, stroke severity and function: a longitudinal cohort study’, african journal of disability 11(0), a947. https://doi.org/10.4102/ajod.v11i0.947 note: special collection: disability unplugged. original research post stroke health-related quality of life, stroke severity and function: a longitudinal cohort study tasneem hartley, marlette burger, gakeemah inglis-jassiem received: 09 sept. 2021; accepted: 20 nov. 2021; published: 26 jan. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: health related quality of life (hrqol) is a determinant of physical, social and emotional well-being post-stroke. objectives: this study aimed to correlate self-reported hrqol with activities of daily living (adl) and stroke severity. method: a longitudinal observational study was conducted at a rehabilitation centre in the western cape, south africa. stroke inpatients were sampled over 6 months. the euro-qol five dimensions instrument (eq5d-3l) for self-reported hrqol, barthel index (bi) for function and independence in adl, and modified rankin scale (mrs) for stroke severity were administered on admission and discharge. statistical analysis was performed using statistical package for the social sciences (spss) version 25. results: of the 54 potential participants, 49 met inclusion criteria and 41 completed reassessments (median age 48 years [interquartile range {iqr} 39–60]; median length of stay 53 days [iqr 46–60]). most participants had infarctions (89.90%); with hypertension or diabetes risk factors (73.47% and 28.57%, respectively). the bi and mrs scores improved significantly (p < 0.001) with very strong correlation between scores (rs = -0.874, p < 0.001); indicating a trend of decreased stroke severity as function improved. the eq5d visual analog scale (vas) scores (p < 0.001) and domains mobility, self-care, usual activities (p < 0.001) and pain/discomfort (p = 0.034) improved significantly. the anxiety/depression domain showed a non-significant change (p = 0.378). a weak negative significant correlation existed between eq5d vas and mrs scores (rs = -0.362; p = 0.02); indicating a trend that hrqol was not improving to the degree stroke severity decreased. a weak positive significant correlation was seen between eq5d vas and bi scores (rs = 0.329; p = 0.036). conclusion: although an improvement was noted in hrqol, eq5d vas scores tended not to improve as strongly, despite significant improvements in function and stroke severity. these findings demonstrate the need for psychological support and pain management interventions for adjustment post-stroke. keywords: stroke; cerebrovascular accident; health-related quality of life; function; south africa. introduction globally, stroke is the third most common cause of disability and an increasing global burden (bertram et al. 2008; lozano et al. 2012). according to naghavi et al. (2017), stroke and ischaemic heart disease accounted for 85.1% of cardiovascular disease-related deaths globally. taylor and ntusi (2019) stated that if the current trends in stroke continue, there would be 20 million annual stroke-related deaths and 70 million stroke survivors globally by 2030. it is well-documented that 80% of strokes occur in lowto middle-income countries (lmics) (maredza, bertram & tollman 2015; pate et al. 1995; taylor & ntusi 2019). a review by kengne and anderson (2006) indicated that there is also an increased incidence of young stroke in lmics, as compared to high-income countries. this phenomenon affects the sub-saharan african region in particular (kengne & anderson 2006). furthermore, global trends highlight an increased rate of ischaemic stroke in young adults. this increase may be associated with infective diseases such as hiv (boot et al. 2020). south africa has one of the highest rates of hiv and aids infections, and young stroke within the country has been attributed to hiv and aids (taylor & ntusi 2019). as a result of the increase in these stroke risk factors, taylor and ntusi (2019) described an epidemiological transition in south africa where stroke occurs in a relatively younger population. with the high rate of non-communicable diseases (ncds), lack of physical activity, poor diet and rate of alcohol consumption, stroke has become the eighth most common cause of years of life lost to illness and ninth cause of disability in south africa (bryer et al. 2010; maredza et al. 2016). the potential long-lasting consequences of stroke-related disability could be minimised with effective and efficient stroke care services. health related quality of life (hrqol) is a determinant of physical, social and emotional well-being post-stroke (hartigan et al. 2011; hunger et al. 2012). hence, understanding the subjective perception of an individual’s hrqol with regards to recovery post-stroke may guide the planning and delivery of targeted and/or appropriate person-centred stroke rehabilitation services. stroke-related disability results in a great financial burden on stroke survivors and their families because of the stroke-related care requirements and the patients potentially not being able to return to productive activity (langhorne, bernhardt & kwakkel 2011; rhoda 2014). with the increase in stroke rate and the number of strokes occurring in lmics, there would be a concomitant increase of stroke-related economic burden borne by stroke survivors in these countries too (taylor & ntusi 2019). hence, understanding the perception of an individual’s hrqol with regards to recovery post stroke is imperative in improving healthcare services which are better geared towards stroke recovery (katona et al. 2015; jalali & dutta 2012; tang et al. 2013). stroke has varying degrees of severity which can affect mobility and independence in activities of daily living (adl) which is strongly associated with hrqol (markus 2012). the hrqol encompasses not only physical health status but psychological, social functions as well as environmental factors (badaru et al. 2015). thus, young stroke may have detrimental effects on quality of life at an age in which individuals are productive members of society (hartley et al. 2020). recovery post stroke could take months to years, and is a formidable journey with many individuals not regaining their previous level of function (yeoh et al. 2019). rehabilitation services are centred around functional status with little emphasis on the patient’s perception of function and quality of life. a patient’s perception of their function and quality of life is essential in post-stroke recovery and a determinant for progress as physical, social and emotional well-being are inter-related (duff 2012; guise et al. 2010; hartigan et al. 2011; hunger et al. 2012; ntsiea, van aswegen & olorunju 2013). previous cohort studies report that poor hrqol is associated with depression, which is a common occurrence post stroke as 1 in 5 stroke patients experience anxiety and 1 in 3 experience depression (ojagbemi et al. 2017a, 2017b; unibaso-markaida et al. 2019). anxiety and depression within stroke patients are strongly associated with poorer functional outcomes, poorer cognitive impairment, and family support (ojagbemi et al. 2017a). in addition, limited social interaction which is inter-related with cognitive and functional impairments post stroke, further negatively impacts perceptions of hrqol (isaac, stewart & krishnamoorthy 2010; unibaso-markaida et al. 2019). previous studies report that greater stroke severity and poorer physical functioning adversely affected hrqol (badaru et al. 2015; rhoda 2014). in addition, 29% – 85% of stroke patients experience anxious and/or depressive symptoms which have been shown to negatively influence physical functioning (badaru et al. 2015). the physical consequences of stroke in addition to the psychological and emotional detriments decrease the social functioning of stroke survivors which all adversely affect their hrqol (badaru et al. 2015). majority of stroke patients in south africa, are unable to return to previous day to day activities and have increased levels of depression and anxiety, which in turn affect their overall hrqol (rhoda et al. 2014). previous longitudinal studies report that hrqol in stroke patients does improve with rehabilitation 6–12-months post stroke as compared to the acute phases (lynch et al. 2020). however, when comparing the hrqol of stroke patients to age matched healthy individuals, the hrqol of stroke patients is poorer (boot et al. 2020; rhoda 2014). although many studies have reported on the hrqol post stroke in south africa, this is the first study to correlate hrqol of stroke inpatients using the euro-qol five dimensions instrument (eq5d) with stroke severity and independence in adl. this tool has been validated and shown to be responsive in the stroke population (dorman et al. 1997), and shows good accuracy when completed by a proxy (pickard et al. 2004). in addition, it has been validated in the south african population (jelsma & ferguson 2004). methods we conducted a prospective longitudinal study with a preand post-design where patients were assessed upon admission and prior discharge from inpatient rehabilitation. the stellenbosch university health research ethics committee (hrec) approved this study (s15/10/232) and all participants provided written informed consent. the study was conducted at an inpatient rehabilitation setting, the western cape rehabilitation centre (wcrc) based in cape town, south africa. the wcrc has a catchment area that encompasses the entire western cape province as well as the surrounding provinces with some admissions from the northern and eastern cape provinces. some patients are also referred from neighbouring countries such as lesotho, zimbabwe and namibia. the data reported in this article pertains to hrqol (eq5d), stroke severity and functional status (modified rankin scale [mrs] and barthel index [bi]) which formed part of a larger prospective longitudinal descriptive cohort study (hartley et al. 2020). the rehabilitation centre provides high-intensity, specialised inpatient rehabilitation, which accepts appropriate referrals from all levels of healthcare services (i.e. tertiary, secondary, district and primary level healthcare services) in south africa. the rehabilitation team may include doctors, physiotherapists, occupational therapists, speech therapists, dietetics, as well as appropriate referrals to social workers and psychologists where necessary. each patient is holistically assessed on admission by the multidisciplinary team (mdt) and a tailored individualised rehabilitation programme is developed (wcrc 2021). these patient-centred interventions are tailored to each individual’s cognitive and physical abilities as well as mental health needs. rehabilitation is scheduled monday to friday, with 30 min to hourly sessions per therapy session. sessions with psychology and social work services may not be as frequent, but are provided to meet specific patients’ needs. the intensity and frequency of sessions would be determined by each patient’s capacity, endurance and participation in therapy along with available therapist resources. regular reassessments and mdt meetings are scheduled throughout the rehabilitation process to monitor patient progress and make necessary adjustments to goals and interventions. the rehabilitation process includes family education and discharge planning. in addition, prior to discharge, patients may go home for weekend leave to facilitate integration of rehabilitation activities at home. where possible, home visits are scheduled to assess the home environment and apply interventions appropriately and with feedback, therapists may adapt the home environment where necessary (hartley [wcrc] pers. int., 25 august 2015). an admissions clerk from the rehabilitation centre assisted with the recruitment process and was the liaison between rehabilitation clinicians and the primary investigator (pi). all stroke patients admitted to the rehabilitation centre were eligible for the study. thus, a convenient sampling method was applied over a 6-month period where all eligible participants were screened for inclusion in the sample for this study. the clinicians were educated on the inclusion criteria and referred potential participants to the pi. the pi would gain consent from potential participants and verify if they met the inclusion criteria via perusing their medical records. participants were included if they were 18 years and older, with a first ever stroke, and able to respond to verbal cues or commands in english and/or afrikaans and/or isixhosa (hartley et al. 2020). there was no upper limit to age in terms of eligibility. participants who did not meet the inclusion criteria or were diagnosed with expressive aphasia by their treating therapists were excluded. the stroke diagnosis in most cases were confirmed by ct-scan or mri by the referring healthcare facility. participants were assessed on admission and reassessed on discharge. initially 54 potential participants were screened of which 49 met the inclusion criteria. there was a drop-out rate of eight participants on account of death unrelated to stroke (n = 2) and being discharged prior to reassessment (n = 6). this resulted in 41 participants completing reassessment prior to discharge (see figure 1). figure 1: recruitment flow chart. outcome measures utilised on admission and prior to discharge included the eq5d for hrqol, the mrs for stroke severity and the bi for functional status. these measures were utilised on admission and prior to discharge by the pi. the eq5d is a self-reported hrqol measurement tool used in various conditions including stroke (hunger et al. 2012). the eq5d explores five domains namely mobility, self-care, usual activities, pain/discomfort, and anxiety/depression, which have three level descriptors, namely experiencing no problems, some problems or extreme problems within each domain. level one is the more favourable option where participants experience no difficulty, nor any symptoms, whereas level three describes the inability to perform mobility, self-care and usual activities or experiencing extreme symptoms of pain/discomfort and anxiety/depression. a separate item within the eq5d questionnaire is the vas which required participants to score their health status using a rating, 0–100; the score 0 being worst and 100 the best imaginable health status. the english and south african afrikaans and isixhosa language versions of the eq5d, were previously validated and accepted by the european quality of life group (jelsma & ferguson 2004; jelsma et al. 2004). this self-reporting measure was also found to be valid and reliable in the stroke population (hunger et al. 2012). the 10-item bi was utilised as a self-report measure to assess independence in adl in the current study. the bi is considered the gold standard in measuring functional independence in stroke patients and has excellent validity and reliability (salter et al. 2013). each item of the bi was scored between 0 and 10, with a maximum ideal total score of 100. a higher score indicated a higher degree of independence (salter et al. 2013). the mrs is a frequently used scale to assess stroke severity or level of disability (kasner 2006) and was used for this purpose in the study. the mrs has excellent validity in the assessment of stroke patients but lacks reliability in this population (kasner 2006). patients are given a score of 0–6; 0 being no symptoms, 1 indicating no disability despite symptoms, 2 slight disability, 3 moderate disability, 4 moderately severe disability, 5 indicating severe disability, and 6 death (bonita & beaglehole 1988; rankin 1957). once all data were coded and captured in microsoft excel, statistical analysis was done. continuous data including bi and mrs were summarised using median, interquartile range (iqr) and empirical 95% confidence intervals (ci). statistical analysis was performed using statistical package for the social sciences (spss) version 25. association between categorical variables was assessed using the wilcoxon signed ranks test. differences in distribution of continuous variables over different levels of categorical variables were evaluated using the kruskal-wallis test, and where differences were detected, the dunn’s test was used for pairwise comparisons. statistical significance was assessed at the 5% level. correlations were interpreted as follows: 0.20 – 0.39 = weak; 0.40 – 0.59 = moderate; 0.60 – 0.79 = strong; and 0.80 – 1.00 = very strong (mukaka 2012). results demographics as summarised in table 1, the median age of participants was 48 years, and they had a mean length of stay of 53 days. majority of participants had an infarction-type stroke (89.90%) with a nearly equal number of participants presenting with leftand right-sided hemiplegia. hypertension and diabetes were the most common stroke risk factors (73.47% and 28.57%, respectively), as well as a low cluster of differentiation 4 (cd4) count in participants with hiv+ diagnosis (n = 9; median cd4 count: 130). table 1: demographic and stroke related characteristics. functional status and stroke severity the biggest improvement noted on discharge in the mrs measure was the decrease in the number of participants scoring 4; that is, presenting with moderately severe disability, being unable to walk without assistance nor being able to attend to own bodily needs without assistance. on admission, a total of 63.27% (n = 31) scored 4 and because of improvement, this number significantly reduced to 26.83% (n = 11) on discharge with the median score for the sample being 2 (p < 0.001). a score of 2 indicated slight disability with participants being unable to carry out all previous activities but able to look after own affairs without assistance. on discharge, 31.71% (n = 13) of participants scored 1, which is indicative of no significant disability despite symptoms, which indicates that participants were able to carry out all usual duties and activities (see table 2). although these results proved statistically significant, it is important to note that the mrs has neither established minimally clinically important difference (mcid) nor minimal detectable change (mdc) (de haan et al. 1995). table 2: stroke severity measured with modified rankin scale. on admission, the median bi score of 55 indicated severe dependence in adl or maximal assistance required with self-care and mobility. the median bi score improved by 35 points on discharge (median 90; p < 0.001) indicating that some assistance was still required with mobility for a few participants (see table 3). the bi has a mdc in score of 4.02 points (hsieh et al. 2007), hence the current sample of participants demonstrated both a statistically and clinically significant functional improvement during inpatient rehabilitation. the changes in score on discharge showed a very strong negative significant correlation between the mrs and the bi (rs = -0.874 p < 0.001) (see table 4). table 3: functional status measured with barthel index ß. table 4: correlation between euro-qol five dimensions instrument visual analog scale score, modified rankin scale and barthel index scores. health related quality of life the median score for the best imaginable health state on admission (measured on vas), increased by 30 on discharge indicating a significant improvement post rehabilitation (refer to table 5). in terms of the eq5d item descriptors, level 1 is better than a level 2, hence a negative median difference in score would indicate an improvement. all domains except anxiety/depression showed a significant improvement in their median difference score between admission and discharge (refer to table 5). in comparison to admission, participants improved significantly in the functional domains of mobility, self-care and usual activity with majority of participants reporting no problems in each of these domains upon discharge (p < 0.001). participants experiencing no symptoms of pain/discomfort improved from 57.14% to 68.29% on discharge. even though the median score for the pain/discomfort domain was 0, showing no improvement, seven participants improved from a 2 to a 1 score, whereas one participant changed from a score of 1–2, hence an overall statistically significant improvement was noted (p = 0.034). with regards to the anxiety/depression domain, 65.31% of participants reported no symptoms of anxiety/depression on admission compared to 78.05% reporting no symptoms on discharge. although this domain of anxiety/depression had a median change in score of 0, a total of nine participants improved from a score of 2 to 1, whereas four regressed from a score of 1 to a 2. hence, no statistically significant findings were noted (p = 0.378). on discharge the changes in score showed a weak negative significant correlation between the eq5d vas score and the mrs (rs = -0.362; p = 0.02). a weak positive significant correlation was seen between the eq5d vas score and the bi (rs = 0.329; p = 0.036) (see table 4). table 5: health-related qol measured with euro-qol five dimensions instrument. discussion the significant improvements in bi and mrs scores upon discharge showed great improvement in functional independence and severity in disability. the negative correlation between the bi and the mrs in the current study was expected as participants’ stroke severity score (mrs) would decrease as they became more independent in adl, while bi would oppositely increase as function improved. thus, the very strong correlation (rs = -0.874) may indicate participants’ stroke severity decreased to a similar degree to which their independence in adl improved (langhammer et al. 2017). similarly, a significant improvement was seen in all the functional domains (i.e. mobility, self-care, usual activities) of the eq5d with most participants scoring in the higher percentiles for these domains. however, pain/discomfort showed a significant improvement, but not to the same degree as functional domains. no significant change was seen with regards to the anxiety/depression domain which may indicate this domain did not improve to the same degree. functional ability greatly influences hrqol (abubakar & isezuo 2012; delcourt et al. 2011; howitt et al. 2011; raju, sarma & pandian 2010). stroke survivors with more severe neurological impairments and therefore more residual physical disability post stroke may require long-term care and assistance with adl, thus significantly reducing their hrqol (bettger et al. 2014). previous literature has shown that therapies such as physiotherapy and occupational therapy improve physical functioning, and hence leads to improvement in overall hrqol (christian & fink 2020; langhammer et al. 2017). however, the weak correlations between the eq5d and functional measures bi and mrs shows that even though stroke severity decreased and functional independence increased, the improvement in eq5d vas score/perception of best imaginable health state did not improve to the same degree. some studies also report poor hrqol post stroke even with minimal to no disability (lai et al. 2002), while others identified functional status as an independent factor affecting hrqol (abubakar & isezuo 2012; katona et al. 2015). a poorer perceived hrqol even with significant improvement in functional status may be affected by age (abubakar & isezuo 2012) where having a stroke at a younger age may have devastating effects (hartley et al. 2020). because of the general occurrence of musculoskeletal impairments and neuropathic pain post stroke, pain and discomfort is often a common occurrence in stroke survivors and can affect functional ability (benlidayi & basaran 2013; kong et al. 2004). thus, this domain may not have improved to the same degree as functional domains. in a 2.5-year prospective longitudinal study by katona et al. (2015), the pain/discomfort domain in the eq5d deteriorated twice as much as compared to other eq5d domain improvements seen over time. previous studies report that up to 70% of stroke patients suffer from chronic pain (harrison & field 2015; naess, lunde & brogger 2012). this is concerning as chronic pain may not only impair functional ability and increase the risk of depression, but further reduce hrqol and add to the anxiety patients may experience post stroke (benlidayi & basaran 2013; harrison & field 2015; katona et al. 2015; kong et al. 2004). moreover, even though there is sufficient evidence for effective treatment for pain post stroke, previous literature found that patients are often not diagnosed, not given the appropriate treatment, or not treated at all (langhorne et al. 2000; widar et al. 2002). anxiety/depression was the only domain on the eq5d to not demonstrate a significant improvement. anxiety and depression should not be overlooked as these conditions have been closely correlated with poorer physical and psychological hrqol in other stroke survivors (howitt et al. 2011). a systematic review reports that 1 in 3 stroke survivors in sub-saharan africa suffers from depression (ojagbemi et al. 2017b). in addition, 1 in 5 stroke survivors in sub-saharan africa suffer from clinical anxiety and more than 70% of those suffering from anxiety also have depression (ojagbemi et al. 2017b). abubakar and isezuo (2012) conducted a cross-sectional correlation descriptive study on 62 patients 3-months post stroke, measuring factors influencing hrqol which included depression measured by the zung depression self-rating scale. the authors found depression to be an independent determinant of hrqol in stroke survivors (abubakar & isezuo 2012). other studies, reporting the negative effects of anxiety and depression on hrqol, demonstrated that anxiety had a greater impact on psychosocial issues as compared to physical health (donnellan et al. 2010; morris et al. 2013; raju et al. 2010; tang et al. 2013). anxiety and depression post stroke further reduces return to usual activities, which may result in loss of productivity. this may cause added personal and social losses (chen et al. 2019; harris 2014). the authors report that anxiety symptoms may take a while to appear and usually occur between 1 month and 1 year post incident. lynch et al. (2020) reported on the long-term outcomes of stroke patients discharged into an inpatient facility compared to patients being discharged home from acute care. the study found that patients discharged home had a poorer hrqol which may be because of less support and increased physical demands (chen et al. 2019; harris 2014). however, kainz et al. (2021) conducted a 12 month follow up of stroke patients and found that patients had a better hrqol at 12 months as compared to their 3-month follow up. although, these participants living with stroke had a poorer reported hrqol as compared to the healthy age-matched population at 12 months. hence, a longer-term approach is needed in order to diagnose, monitor and treat these mental health-related symptoms to improve overall hrqol (katona et al. 2015). being that the current median age for our sample was 48 years, the consequences of stroke may be more devastating for these younger participants who are at risk of not returning to full function or resume participation and productive activity. as at this age, individuals would most likely be involved in work and/or be responsible for dependents. young stroke occurring in hiv positive (+) people has become a trend in current literature and was a notable concern in the current study sample (hartley et al. 2020; heikinheimo et al. 2012; taylor & ntusi 2019). the younger cohort of stroke survivors in the current study may reflect other socioeconomic and physical challenges as their day-to-day activities may have required more responsibilities. palmcrantz et al. (2014) conducted a cross-sectional study in sweden comparing hrqol of young strokes to the general population using the eq5d. when comparing age and geographically matched groups, the young stroke group rated themselves significantly lower in most of the domains on the eq5d except the pain/discomfort domain. even though young strokes are expected to make a better recovery than their older counter parts, family responsibilities and return to work (rtw) may be greatly affected. however, other studies such as the nigerian study conducted by abubakar and isezuo (2012) found that age had no negative influence on hrqol. when comparing the current study sample vas scores (80) to scores of older persons living with stroke (60–75 years), the current study sample had a better outcome as would be expected with a younger stroke population (lynch et al. 2020). however, a systematic review conducted on studies with african stroke survivors found that this population had a poorer hrqol as compared to their healthy age-matched counter parts (bello et al. 2021). similar results were found in a south african study which utilised the eq5d (jelsma & ferguson 2004). the general public had a higher percentage of participants who reported no problems for all functional domains but less so for pain/discomfort and anxiety/depression. the general public also had a higher median vas score (85.1) as compared to the current study population on discharge (80) (jelsma & ferguson 2004). with regards to the pain/discomfort and anxiety/depression domains as well as vas, the current study’s sample may have scored similar or higher than the general public as a result of not permanently residing at home, not being age matched and having more support within the inpatient rehabilitation setting. rhoda (2014), who conducted a similar study in the western cape but with community dwelling stroke survivors, found that people with stroke did poorer in all domains of the eq5d compared to the general public. international studies had similar findings to rhoda (2014), hence these findings highlight the negative impact stroke may have on function, pain, mental health and overall hrqol (naess et al. 2006; unibaso-markaid et al. 2019). quality of life extends to productivity or return to previous function such as work. westerlind et al. (2017) conducted a 6-year follow up study on rtw of stroke participants under 63 years in sweden. these authors linked degree of disability on discharge as a potential predictor for rtw post stroke. the authors categorised a score of 0–2 on the mrs as functional independency and 3–6 as dependency. those participants who scored 0–2 on the mrs were likely to rtw and those who scored between 3 and 6 in addition to being on sick leave prior to stroke, were not likely to rtw (westerlind et al. 2017). at the 3-year mark, 48.3% of participants rtw and at 6 years 74.7% of participants rtw. with regards to eq5d domains, no significant differences were seen between those who rtw and those who did not. however, a significant difference was seen with regards to the eq5d vas scores (p = 0.012) with those who rtw rating a higher overall hrqol (westerlind et al. 2017). this study demonstrated a high rtw rate, most likely because of the swedish government providing subsidies to companies who employ disabled individuals, in addition to being a high-income country with tax funded rehabilitation, care and sick leave. even though the current study sample had a median of 2 on the mrs, south africa is a middle-income country. therefore, in the south african context, the support given by the government in addition to education levels, socio-economic factors, limited resources and ill equipped health system may negatively influence rtw and overall hrqol for people with stroke (de la cornillere 2007; kahonde, mlenzana & rhoda 2010; kumurenzi et al. 2015; national health insurance 2011; ntsiea 2019; sulla & zikhali 2018). palmcrantz et al. (2014) found that in addition to rtw in young strokes, leisure activities, which is used to cope with stroke deficits, were associated with physical health and should become an integral part of rehabilitation programmes (carlsson, moller & blomstrand 2009; vestling et al. 2003). the findings of this study and previous literature infer that rehabilitation and future studies should focus on psychosocial aspects of health and mitigating social barriers to achieve full community reintegration (alguren et al. 2012). in terms of the south african context, there has been a rapid change in the stroke demographic which taylor and ntusi (2019) referred to as an epidemiological transition. given that global trends indicate an increase in a younger stroke population, rehabilitation services should ideally cater for more than safety and independence in adl (boot et al. 2020; guise et al. 2010; ntsiea 2019). previous studies conducted on stroke rehabilitation in south africa report that stroke survivors are discharged prematurely because of limited rehabilitation services and have a poor recovery rate post discharge from inpatient rehabilitation (ntsiea 2019; scheffler & mash 2019). rehabilitation was often focused on functional independence to participate within community with little emphasis being placed on barriers limiting full social integration and psychosocial aspects (duff 2012; guise et al. 2010; ntsiea et al. 2013; scheffler & mash 2019). in addition, stroke patients were further limited in terms of education, work and transport upon discharge (ntsiea 2019). furthermore, accessibility to community rehabilitation services or home-based care are limited on account of poor resources, transportation difficulties, poor referral systems and lack of information about rehabilitation services (de la cornillere 2007; kahonde et al. 2010; kumurenzi et al. 2015; ntsiea 2019; scheffler & mash 2019). thus, regardless of the functional recovery the current study sample has gained within inpatient rehabilitation, if this is not followed through with adequate community rehabilitation aimed at improving the patients perceived hrqol, their anxiety/depression as well as pain/discomfort may further deteriorate. this is a great challenge as majority of south africans use the public healthcare system which is riddled with inequality in access and distribution of healthcare resources, including support and mental healthcare services (national health insurance 2011). limitations with regards to the limitations in the current study, the selection bias (by excluding participants with severe communication disorders), the small sample size, recruitment from one site, and short follow up period, hindered generalisability of results. it is unclear whether hrqol may have regressed on return home as participants no longer had the support of the specialist inpatient facility. in addition, even though the eq5d includes the domain of usual activities, referring to work and study, specific statistics on return to productive activity were not included in the current study nor were participants followed up after discharge. recommendations we recommend that future studies include 6–12 month follow up periods to attain information on residential and community reintegration as well as return to productive activity and how this may impact hrqol. in addition, a probability sampling method for future studies could be used to improve generalisation of results. clinical outcomes within the rehabilitation setting need to accommodate for the new stroke demographic and potentially longer length of stay to optimise recovery to include community reintegration which includes participating in civic life, work and education (who 2011). in addition, we recommend that clinicians strategically select outcome measures to monitor the person with stroke’s perception of hrqol (and potentially the long-term sequelae of pain/discomfort and anxiety and depression). we advocate that these person-centred outcomes should be routinely incorporated in stroke rehabilitationand discharge planning along the continuum of care from acute care to later stages of community reintegration. these intervention and monitoring strategies should form integral parts of goal setting during post-stroke rehabilitation to foreground patient and family support needs and where indicated, earlier referral to psychologists and/or community-based stroke support groups. conclusion although an improvement was noted in hrqol of people with stroke receiving inpatient rehabilitation, their eq5d vas scores tended not to improve as strongly, despite significant improvements in function and stroke severity. these findings demonstrate the need for psychological support and pain management interventions for the post-stroke adjustment. as these physical and psychosocial needs may only become more pertinent once people with stroke are home and discharged from acute or inpatient rehabilitation settings, support services and long-term self-management interventions could be better placed, and therefore more accessible, at a community level. implementation of these community-based support services may be the key to better quality of life and realising productive activity for younger stroke survivors in south africa. acknowledgements the authors would like to thank tonya esterhuizen, a biostatistics consultant within the division of epidemiology and biostatistics, department of global health, stellenbosch university, for assisting with the design and analysis of this study through support from the faculty of medicine and health science’s dean’s fund. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.h. was the main author who was responsible for data collection, data analysis and interpretation. t.h, g.i-j., and m.b. were responsible for the conceptualisation of the study design as well as for writing and editing of the manuscript. ethical considerations ethical clearance to conduct this study was obtained from the health research ethics committee, stellenbosch university: (no. s15/10/323). funding information this study was funded by the harry crossley foundation. during the completion of this manuscript, marlette burger was funded by the south african medical research council through its division of research capacity development under the national health scholarship programme from funding received from the public health enhancement fund/south african national department of health. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references abubakar, s.a. & isezuo, 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e0211493. https://doi.org/10.1371/journal.pone.0211493 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) aletta m. moll department of psychology of education, college of education, university of south africa, pretoria, south africa citation moll, a.m., 2023, ‘exploring employees’ coping with disability management practices at a south african university’, african journal of disability 12(0), a1123. https://doi.org/10.4102/ajod.v12i0.1123 research project registration: project number: 2020_rpsc_010_rs original research exploring employees’ coping with disability management practices at a south african university aletta m. moll received: 13 aug. 2022; accepted: 14 june 2023; published: 25 july 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: south african legislation promotes the accommodation of employees with disabilities through enabling modifications and adjustments in the workplace. the literature about the experiences of employees with disabilities in higher education environments regarding accommodation is scant. filling the gap, this research aimed to explore how employees with disabilities at a south african university cope with disability management practices by means of accommodations. objectives: the objectives entailed exploring the encounters of employees with disabilities regarding accommodation in the workplace, their beliefs about these encounters and the meaning that the employees with disabilities attached to them. method: the study design is grounded in the subjectivist epistemology of social constructionism and took on a qualitative approach. the bounded single-case study concerned formative evaluations. the homogeneous purposive sampling strategy amounted to 13 employees with disabilities. twelve semi-structured interviews were analysed using thematic analysis. results: the participants relied strongly on self-agency to address splintered or unresponsive disability management practices. to avoid marginalisation, they worked extra hard for securing a rightful place at work. misconceptions of able-bodied peers or managers triggered psychological stress. conclusion: coping with the university’s disability management practices is mainly a stressful challenge, consequently endangering people’s well-being. contribution: exploring the coping of university employees with disabilities through accommodations filled a gap in the literature. keywords: psychological stress; appraisal; coping; coping theory of lazarus and folkman; employees with disabilities; disability management; accommodation; workplace. introduction background people are not defined by disabilities – as employees, they are a valuable asset in the workplace (department employment and labour, south africa n.d.:1). more than a decade ago, kleynhans and kotzé (2010:405) conducted a quantitative survey study in a south african province. they found that the attitudes of managers and employees from several companies towards people with physical disabilities in the workplace were negative. although not stated blatantly, these attitudes came to the fore as apathetic attitudes. attitude is a tendency to view an entity as more or less favourable, but it can be changed (blair, dasgupta & glaser 2015:665, 681). this research aimed to explore how employees with disabilities at a south african university cope with disability management practices by means of accommodations, through the lens of coping theory postulated by lazarus and folkman (1984). the objectives entailed, firstly, exploring the encounters that the employees with disabilities came across regarding accommodation in the workplace. secondly, what were their beliefs about the self and the university regarding these encounters? beliefs relate to how people conceive themselves and their place in the surrounding environment, namely the university. beliefs shape expectations and, therefore, anticipatory outcomes that are constantly dealt with in appraisals, such as success or failure (lazarus 1999:71). thirdly, what meaning or subjective cognitive appraisal did the employees with disabilities attach to these encounters during their evaluation. legislation legislation and policies in the republic of south africa (rsa) predating this study did not attain changed attitudes towards employees with physical disabilities, according to the study by kleynhans and kotzé. the constitution, chapter 2, section 9 (rsa, department of justice and constitutional development 1996) guarantees that people with disabilities may not be unfairly discriminated against, either directly or indirectly. it is enacted by the employment equity act, chapter 2, section 6, subsection 1 (rsa, department of labour 1998). negative attitudes (kleynhans & kotzé 2010) as indirect discrimination towards the employees with physical disabilities could have a negative effect on some of these employees. the negative attitudes of managers and employees could be the result of ignorance. the integrated national disability strategy white paper (rsa, office of the deputy president 1997) specifies the raising of awareness and considers it central to the changing of attitudes. the white paper on the transformation of the public service, chapter 10, section 10.6 (rsa, ministry for the public service and administration 1995) prescribes that 2% of government employees must be employees with disabilities by 2005, giving rise to the notion that these employees were not appointed on merit, other than complying with policy. south africa also ratified the 2006 united nations (un) convention on the rights of persons with disabilities (crpd) in 2007. the crpd promotes inclusive workplaces through the provision of reasonable accommodation, among others, in article 27. persons with disabilities is defined in the crpd as those ‘who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’ (un 2006:3). accommodations refer to enabling modifications or adjustments in the workplace, including the ways things are done (shengli, paige & kacey 2022:194). disability management is the responsibility of the employer’s top management to ensure adequate workspaces by adhering to legislation in the employer’s policy that specifies the relevant practices. practices entail the full integration of employees with disabilities through accommodations that are effective and practical by taking their individual circumstances into account (nxumalo 2019:357). accommodations should, thus, be personalised to increase workplace flexibility and self-sufficiency of employees with disabilities (padkapayeva et al 2017). as south africa signed and ratified the crpd, article 2 is also relevant, which states that accommodations should be feasible and realistic and not impose ‘a disproportionate or undue burden’ (un 2006:4). prior to the crpd, south african employers were already guided about the inclusion of employees with disabilities and to protect them against unfair discrimination by the code of good practice on the employment of people with disabilities (rsa, department of labour 2002). the south african government contributed on various levels to promote the accommodation of employees with disabilities. the national strategic framework on universal design and access is one of the initiatives. this framework serves as a prescriptive guide for the promotion and eventual enforcement of universal design and access standards, using a disability inclusion perspective as its motivating force (rsa, department of women, youth and persons with disabilities 2021). however, what are the lived experiences of these employees? the literature about the experiences of employees with disabilities in higher education environments is scant (waterfield, beagan & weinberg 2018:332, 334). the social value of this research is to afford employees with disabilities the opportunity to share their narratives about accommodation in creating awareness of their experiences at a south african university. the scientific value is discussed next. literature review on the south african front, a qualitative study explored how education, training and development support the wellness of employees with different physical and sensory disabilities at various companies (van niekerk, maguvhe & magano 2022). the holistic wellness of the employees was considered according to a six-dimensional model of wellness (van niekerk et al. 2022:3). the need to ‘develop coping skills’ is discussed as part of the key findings of van niekerk and associates (2022:6), thus leading to the question on how employees with disabilities cope in the first instance. as waterfield and associates (2018:332,334) indicate that there is scant literature about the experiences of employees with disabilities regarding accommodation in higher education environments, the question was further delimited to fill a gap in the literature. therefore, the empirical research focused on how employees with disabilities coped with disability management practices through accommodations at a south african university. experiences that employees with disabilities have to cope with in the workplace are already highlighted in the literature. employer attitude poses as a barrier regarding accommodation of employees with disabilities (holness 2016:520; nxumalo 2019:358; padkapayeva et al. 2017). an example of a negative attitude is the employer’s fear of the perceived high cost of workplace accommodation (shengli et al. 2022:195), while the cost of most accommodations is, in fact, inexpensive (schur et al. 2014:614; stefan 2002:168). the employees with disabilities remain marginalised ‘despite various employment laws’ in south africa that should ensure their full integration in the workplace (nxumalo 2019:357). managers’ and colleagues’ lack of knowledge about disability (padkapayeva et al. 2017; shengli et al. 2022:194) has adverse effects, and human resource practices are discriminatory against employees with disabilities (potgieter, coetzee & ximba 2017:9). ignorance, specifically about mental health impairment or conditions, impedes employee accommodations (holness 2016:510–511, 514; nxumalo 2019:358; smith et al. 2022:4–5). prior to attaining work accommodation, the disability must be declared, which may create negative consequences, in particular for employees with mental health conditions (shahwan et al. 2022:1253). the lancet commission (thornicroft et al. 2022:1443–1445) states that employees with mental health conditions commonly experience restrictions, such as reduced job opportunities or discrimination at work. shahwan and associates (2022:1252) mention how stigma about mental health conditions is perpetuated in the workplace. the lancet commission calls for an end to all forms of stigma and discrimination (thornicroft et al. 2022:1438). employees with disabilities also struggle with disclosure of their disability to coworkers as well as the frustration that they cannot compete on a level playing field with their able-bodied colleagues (bam & ronnie 2020:4–6). they may choose to self-accommodate by figuring out ways of how they can adapt to the work environment, sometimes exerting themselves beyond their physical capacity (bam & ronnie 2020:5; stefan 2002:179; mkhwanazi & moll 2022). shengli and associates (2022:201) refer to ‘employee fear’ of employees with mobility disabilities in disclosing disability and requesting accommodation because of stigma. employees feared, among others, of being deemed as receiving preferential treatment. furthermore, some mobility challenges are invisible, despite using a wheelchair. other concerns preventing employees with mobility disabilities from requesting accommodation included long wait times between requesting and receiving accommodations, bureaucratic red tape, a lack of coordination and carrying out service requests (shengli et al. 2022:202). in the context of a disability discourse, employees with disabilities in academia are constituted as less capable, less productive and a ‘nonoptimal academic’ (waterfield et al. 2018:342). consequently, they have to work hard to be deemed ‘good enough’ when productivity is measured against standards that are the same for all academics (waterfield et al. 2018:345). theoretical orientation filling the gap in the literature – exploring how employees with disabilities coped with disability management practices through accommodations at a south african university – has been framed by the coping theory of lazarus and folkman (1984). coping consists of efforts to ‘manage stressful demands’ (lazarus & folkman 1984:134). coping is defined as process-oriented through constant change in cognitive and behavioural efforts to manage particular demands that are tough or surpassing the resources of the person (lazarus & folkman 1984:141). it concerns what people are thinking and doing (lazarus 1993) when confronted with stressful demands. lazarus and folkman (1984:21) define psychological stress as a relationship between a person (the employee with disability) and the environment (the university as workplace), which is appraised by employees with disabilities as taxing or exceeding their resources and endangering their well-being. evaluating a person–environment relationship as stressful swivels on subjective cognitive appraisal (lazarus 1990:4). psychological stress can set a chain of negative biological physical reactions in the body in motion (lazarus 1993:48). stress is a two-way process between the environment and the individual’s subjective meaning-making of stressors through cognitive appraisals. an encounter between the environment and the person takes place which may or may not cause psychological stress depending on the appraisal. the appraisals are either primary appraisals or secondary appraisals, not to be misconstrued as one is more important than the other – it only indicates the type of appraisals. coping is not associated with mastery over the environment, as many causes of stress cannot be mastered. no strategy or effort is considered better than the other – any strategy is appropriate if the desired effects are achieved in any given situation, including the effects thereafter (lazarus & folkman 1984:134). primary stress appraisal of an encounter can be judged as: (1) irrelevant without any implication for a person’s well-being, (2) benign-positive with the promise of preserved or enhanced well-being or (3) stressful. if appraised as stressful, three forms are discerned, namely: (1) harm or loss as damage has already been sustained; (2) threat as anticipated harm or losses and (3) challenge with the potential for gain inherent to the encounter. examples of work stressors are, respectively, not being promoted (lost career advancement), fear of medical boarding (anticipated harm or loss) and excessive struggles in attaining accommodations (challenge with potential gain). secondary appraisal is a judgement or complex evaluative process about what might and can be done by taking all the coping options into account. it questions the viability of whether the outcome will achieve its intended goal as well as what is at stake. even when people believe they have considerable power to control the outcome of an encounter, if the stakes are high, for example, limited career advancement (potgieter et al. 2017), any doubt can produce considerable stress (lazarus & folkman 1984:35). research methods and design the study design is grounded in the subjectivist epistemology of social constructionism (gergen 1985) – an interpretative design – to explore the meaning centred on the subjective process of appraisal (lazarus 1999:60). in keeping with lazarus’ (1990) opinion that psychological stress is mainly subjective and objective measures often fall short, this study took on a qualitative approach. the single-case study was bounded, firstly, by the particular group of university employees with disabilities and, secondly, the university policy of disability management regarding practices (merriam 1998:27). the bounded case study can further be depicted as an evaluative case study that involves ‘description, explanation and judgement’ (merriam 1998:39). this evaluative case study concerns formative evaluations as the findings are context-specific to this research topic (patton 2002:220). as a shared characteristic, the study population consisted of all the employees at a south african university who declared disability. upon receipt of permission from the university employee disability forum executive, the university disability forum sent an e-mail to all the university employees who had declared disability, inviting them as prospective participants. using a homogeneous purposive sampling strategy, the sample size amounted to all 13 participants who volunteered, via return e-mail, to be included in the research, thereby obtaining content-rich data via in-depth interviews (terry et al. 2017). inclusion criteria were, thus, qualified as participants who had declared their disability at the university under the assumption that they requested accommodations by the employer. an exclusion criterion involved participants with disabilities who declared their disability but did not request accommodation at work. the cohort of participants have long-term physical, mental or sensory impairments sustained prior to or during their employment at the university. their duration in the employment of the university, at various levels, stretched across decades to a few years. the participants’ mobility needs ranged from using a wheelchair, crutches, a white cane, transport such as uber, allocated parking at the university or adapted office furniture. technological needs in the workplace required software such as digital notetaking for recording plus transcription, speech recognition plus transcription and onscreen visuals converted to speech on headphones, as well as access via the software to the various systems, interfaces and platforms of the university. the personal needs of the participants included, but were not limited to, additional oxygen supply, medication, adult diapers, carer or personal assistant services, various medical procedures and therapies. data collection against the backdrop of a larger multidisciplinary research project, in which the researcher was involved, 13 semi-structured interviews by means of an interview schedule were conducted via the ms teams platform from june to august 2021, because of the coronavirus disease 2019 (covid-19) lockdown in south africa. the recorded interviews were transcribed verbatim afterwards. the project team members, consisting of various academics, could mine data according to their niche areas for individual research purposes. data analysis numeronyms – containing a number in the abbreviation – as pseudonyms were allocated to the participants starting with p1 (participant 1) to p13 (participant 13). prior to data analysis, these interviews were cleaned to remove all possible identifying particulars. during the cleaning that comprised focused reading, the researcher established that participant 12 did not request any accommodation other than ordinary support ‘because i am an employee in the university’, similar to the support that every employee would welcome in the workplace. therefore, only 12 interviews were analysed in accordance with the exclusion criterion. regarding the second set of cleaned interviews, figure 1 shows how data analysis proposed by saldaña (2021) realised the aim of the research. thematic analysis commenced with manual solo coding of the transcribed datasets using word processing software of microsoft word in the table format, which provided columns for the various stages of analysis. figure 1: exposition of the coding process used in thematic analysis. vis-à-vis trustworthiness, the subjective analysis of data was curbed to a certain extent by: (1) bracketing, including bouncing ideas off another scholar, sometimes on a daily basis, (2) precoding, (3) writing copious analytic memos during the cleaning of each interview and (4) limited unobtrusive member checking via phone. precoding and analytic memos also assisted in determining the first cycle coding methods that consisted of in vivo, value, versus and evaluation coding of the large datasets of 12 transcribed interviews. preceding the second coding cycle, recoding took place as also suggested by the iterative framework – a reflexive process – of srivastava and hopwood (2009). the second cycle of coding methods consisted of pattern and focused methods, followed by code weaving for theming purposes in realising the aim of the research. ethical considerations permission was given, as ethical clearance was obtained from the research permission sub-committee of the senate research, innovation, postgraduate degrees and commercialisation committee on 22 september 2020. the reference number is 2020_rpsc_010_rs concerning the approval period from 22 september 2020 to 21 september 2022. all procedures involving the participants were compliant with the ethical standards of the south african university involved. nonwritten consent, firstly, included disability related to low vision and blindness, as well as limited ability and inability to use upper limbs, and required abilities for signing. although various software applications may provide assistance in most instances, being respectful and maintaining dignity superseded the requirement of written informed consent. secondly, upon the informative invitation e-mail, the responding e-mail of the participants presented their implied consent. thirdly, verbal consent was obtained at the beginning of the interviews. lastly, the ms teams platform also displayed in a pop-up message that the interviews were being recorded. the particular south african university was kept anonymous during the duration of the study. the topic of the women in research project under which funding has been allocated (funding statement) is in accordance with the above, by stating a generic topic, namely ‘disability management in an open and distance learning workplace’ without identifying the particular university (as per the permission as an ethical clearance document, uploaded as a supportive documentation). the generic topic (see data collection) pertaining to the larger multidisciplinary research project in which the researcher was involved according to her individual niche research also included interviews with disability management support staff, health and safety personnel and line managers that do not feature in this submission of individual niche research. results the participants readily provided situational thick descriptions or content-rich data (terry et al. 2017) with the primary focus on interpersonal aspects (denzin 2001:107) during the open-ended interviews. they shared narratives around their encounters regarding accommodation in the workplace; their beliefs about the self and the university practices regarding these encounters, including how these beliefs shaped their expectations and the meaning or subjective cognitive appraisal attached to the encounters and their beliefs during their evaluation of accommodations. their cognitive appraisals resulted in their coping options. the following themes emerged as shown below. theme 1: splintered or unresponsive disability management practices resulting in employees with disabilities’ self-agency via various avenues metaphorically, the bureaucratic wheels of the vehicle providing accommodations are either turning slowly or have derailed, as evident in the following two quotations that are representative of the participants’ broad evaluation. in coping with ongoing challenges to acquire accommodations, the cumbersome process is taxing and endangering well-being as it is ‘the same story again; there is a lot of hard work, blood, sweat and tears that go into it before eventually getting an outcome’ (p8, m, partially blind). at worst, participant 11 described disability management as ‘no entrenchment of the policies and procedures in terms of disabilities’ (p11, f, expressive speech impairment) and, therefore, difficult or unlikely to change. during member checking, participant 2 compared a senior staff member, concerned with disability management practices, to a wooden door. this inanimate or unresponsive approach was confirmed by participant 6 who reiterated that ‘personal contact is very important, also for the sake of the dignity of the person with disabilities’ (p6, f, albinism [low vision including nystagmus]). other than feeling undignified, participant 6 ascribed unresponsiveness to superiority of staff members dealing with disability management practices versus the inferiority of the employee with a disability: ‘just knowing that someone up there knows that i’m down here working with my disability and i’m doing my best and just check on me to see if i need anything and if i’m coping.’ [author emphasis] (p6, f, albinism [low vision including nystagmus]) the emergent interpersonal patterns after data analysis are followed by the participants’ quotations to illustrate the splintered or unresponsive disability management practices at the university. splintered or unresponsive disability management by way of primary appraisals as a background to the disability management procedure, participant 2, a female participant with paraplegia, was confused by the ‘millions of policy documents and procedures in place’, and if an employee with a disability ‘do not know of them [the procedures or practices], where to go or which form to submit to hr [human resources]’, the employee was lost. participant 3, a female with a progressive physical disability affecting upper extremities, confirmed that other employees ‘end up not getting assisted because they do not have information. the disability management is an unknown concept … that unclear line of information’ as there are ‘many hoops and loops that you have to jump through, but you have to be persistent’. a ‘dicey issue’ around unresponsiveness is brought to the fore by participant 3 and supported by participant 13: ‘another concern may be the system, where you have to wait a long time and have to write three e-mails or more to get help. so, you need to be persistent and patient, but where do you have the time to be patient when you need immediate help? some things are urgent.’ (p13, f, paraplegia) in the case of one participant, efforts to manage a stressful demand amounted to ‘fighting to get this device’. ‘after deciding against a union rep for people living with disabilities … i roped in my lawyer, because i felt that i was being abused by the employer’. (p10, f, progressive motor disease) splintered services and revolving offices are visited by employees with disabilities as related by participant 13. at one stage, wellness services had been outsourced after which the procedure changed without informing employees with disabilities. the pillar to post journey resulted in other employees with disabilities giving up on wellness support as ‘it is difficult now to encourage them to go there’: ‘i went to ee [employment equity] and they told me that they are also having their own challenges, because they use to report to a certain office, now they are reporting to another office and that is difficult for them … as a staff member with disabilities needing the services, it really doesn’t help … this structural thing and moving departments are messing around with a lot of things here. [w]e need to know which department is really responsible … because now we don’t know who we should be going to.’ (p13, f, paraplegia) splintered or unresponsive disability management practices at the university also affected the participants’ throughput as outlined in the following quotations. affecting throughput unresponsive disability management practices seriously affected participant 8’s work: ‘at one stage i had to wait for the new upgrade for more than three months and during those three months, because it was an outdated version, i was not able to do my work … eventually, i did get the new jaws [job access with speech] package, but it’s ridiculous that it took three months.’ (p8, m, partially blind) participant 4 reached out for counselling unsuccessfully while her work was negatively impacted: ‘i reached out to [employee assistance], and i was not successful there. i wrote to [employee assistance] via e-mail, regarding my own issues with … i did not receive feedback from [them] … with the [mental condition], i would disappear emotionally, become quiet, not participate in meetings and not willing to take chances. it affects my creativity, as well as in the work environment. as someone who likes change and a creative, it has really affected me and my creativity … there are structures, policies, procedures in place. when it comes to the actual people, i don’t see it working.’ (p4, f, chronic health impairment and consequent post-traumatic stress) after participant 5 was denied a single office, she reverted to typing with one hand. ‘even when i motivated … this recording device needs you to be alone, because i’m making noise for the person i’m sharing with.’ (p5, f, cerebral palsy – hemidystonia [not visually noticeable like hemiplegia]) participant 6 proposed that ‘it’s not so much about lightening the workload than rather just distributing it differently’: ‘i don’t see why an external marker can’t be appointed to someone who has trouble marking … for when it comes to marking … that’s very tough for me to decipher the students handwriting because i read with a magnifying glass.’ (p6, f, albinism [low vision including nystagmus]) in dealing with the splintered or unresponsive disability management practices at the university, the participants resorted to the following secondary appraisals or complex evaluative processes about what might and can be done. employees with disabilities’ self-agency by way of secondary appraisals participant 6 said: ‘when you join [this university] it’s up to you – the person living with a disability – to make things happen.’ (p6, f, albinism [low vision including nystagmus]) relying on immediate able-bodied colleagues’ inherent capacity to do good in general, the participants considered their close colleagues as their first line of support according to participants 1, 3 and 5, as shown by the words of other participants: ‘[y]our colleagues … i always have someone in hand to help me with this and that … collegiality is the key for me … it’s a close-knit department that makes it easier for me.’ (p2, f, paraplegia) ‘the colleagues that i work closely with, know about my condition and are aware of what i can and cannot do or what’s easy for me and what’s challenging for me and they are very accommodating in that sense.’ (p6, f, albinism [low vision including nystagmus]) identifying responsive individuals to assist with disability management practices participant 2 described the individual who handles all her disability management matters via the relative department: ‘having someone like [name of person] who brings about warmth into that office, is an invaluable addition’ (p2, f, paraplegia). participant 1 said: ‘they should get more dedicated people there in their offices. i think they are thinly spread there’ (p1, f, lower extremity amputation). participant 10 also identified a particular individual and is supported by participant 9: ‘the only person that i go to and i make sure that i update her … is a lady from the employment equity office. she has been a very supportive person. i just want to give her a hug, because it really helped me not to resign …. (p10, f, progressive motor disease) participant 10 claimed that as disability management lacks criteria in practice, she also turned to forging relations with other senior colleagues who could influence the practices or implementation of disability management: ‘there are no criteria that the university has in place. what has happened is that, because of the person that i am and the relations that i have built over the years at the institution, the people that are my go-to people now, are the people that i forged relations with …’ (p10, f, progressive motor disease) helping other employees with disabilities the participants took it upon themselves to assist other colleagues with disabilities at the university as summarised in the words of participant 1: ‘i would like to do the same for other people.’ participant 13 elaborated: ‘some of the colleagues who are having challenges with disabilities can help each other in terms of getting support from the university … [w]e are sort of veterans, so we have to help others.’ (p13, f, paraplegia) other participants also voiced altruism including the intention to leave ‘a legacy … that i’m supporting people who are differently abled’ (p10, f, progressive motor disease): ‘tomorrow i’m going to meet someone who’s journey just started and one of the things i told her, is that this is something that you learn how to live with and it’s not a once-off thing.’ (p9, f, incurable health impairment) ‘i have been in contact with two other gentlemen who are disabled employees and they are suffering the same fate that i am suffering … the other day we were speaking about sitting and one of the gentlemen mentioned that his back is sore from sitting on the bed and the wheelchair and … i had two chairs made … and i gave the other one to him. we talk and help each other.’ (p10, f, progressive motor disease) negotiating accommodations including attitude in battling with mastery over the environment, participant 10 provided two options – rent the software or deduct money monthly from salary – in an effort to acquire voice recognition and typing software: ‘the last time that i was in the meeting where i broke down, i was also giving the employer an option to buy the gadget for the institution and rent it out for me or buy the gadget and take the money from my salary every month, if getting me a gadget is such a problem.’ (p10, f, progressive motor disease) participant 2 mostly appraised encounters as benign-positive with the potential of preserved or enhanced well-being, as she is of the opinion that ‘it also has to do with one’s attitude as well. it is your whole attitude with yourself and your disability that makes it easier for other people’. ‘sometimes things are difficult, but i’m more of a positive rather than negative person’ (p1, f, lower extremity amputation). participant 7’s attitude is that she does not ‘make the problems a limitation as far as she can handle it’ because ‘disability adjustment must come from both sides’. (p7, f, epilepsy) participant 13 is of the opposite opinion: ‘rather push and if they don’t respond, then you just have to be crazy for things to happen. sometimes it takes a person being crazy for them to listen.’ (p13, f, paraplegia) theme 2: avoidance of marginalisation resulting in employees with disabilities working extra hard to earn a rightful place in the work environment the general belief of how the participants conceived themselves in relation to the work environment is aptly embodied in following quote: ‘you start to feel like you don’t have a place at the workplace’ (p8, m, partially blind). another participant shared a similar sentiment referring to top management: ‘people with disabilities are sort of an afterthought’ (p1, f, lower extremity amputation), reverberating in the employees with disabilities’ belief of getting ‘a favour by employing them [employees with disabilities] because we [the university] need at least two percent of our staff to be people with disabilities’ (p6, f, albinism [low vision including nystagmus]). participant 13 asserted that her appointment was on merit despite her disability while colleagues only later ‘realised that i have that skill’ when they became aware of ‘the contribution that i was making’. however, ‘when you apply for a job … in as much as you have a disability, you still want to get a merit appointment’. (p13, f, paraplegia) participant 10 who became disabled while in the employ of the university took a strong stand against medical boarding: ‘so, if you tell me that … at the end of the day, i can simply go on ill-health and still earn a salary, that is not assisting me; that is killing me instead. right now, my work is one of the things that keeps me going, it’s one of the things that still make me see value in myself … pushing me out with ill-health is not solving the problem … i’m meeting my targets … i’m continuing to drive my boat and it’s going in the right direction.’ (p10, f, progressive motor disease) marginalisation also became apparent through applying the same performance benchmark as for able-bodied colleagues. gauged by the same benchmark as able-bodied employees participant 5 lamented that ‘they expect me to perform as able-bodied people’ as ‘i’m using one hand to type, but i was expected to work as a person who uses both hands’. nonetheless, ‘i was always the first to submit work’. (p5, f, cerebral palsy hemidystonia [not visually noticeable like hemiplegia]) the participants compensated by working extra hard to earn a rightful place in the work environment: ‘it makes you want to prove yourself. so, everything that you are doing, you have to work five times harder’ (p13, f, paraplegia). in maintaining throughput, when one particpant feels well, ‘i push a lot of work and then hold on to it, so that in the days when i’m not feeling well, i … produce what i have already done’ (p13, f, paraplegia). when participant 10 was unexpectedly hospitalised: ‘i phoned and briefed my [superior] and to my surprise, he went on asking about reports … telling me about situations and telling me to manage the situations’ whereafter she complied by devising a ‘support structure’. (p10, f, progressive motor disease) participant 6 adjusted her approach to match meeting practices incompatible with her disability while also embodying participant 7’s attitude to personally deal with limitations: ‘i rely a lot on my memory because i can’t see well [albinism including low vision]. i always make sure that i prepare very well for a meeting and try to memorise the agenda, because they normally use projectors to put these things on and because of my light sensitivity, i can’t see there. i also rely on my hearing a lot, so i just follow the conversation with my hearing.’ (p7, f, epilepsy) theme 3: misconceptions of able-bodied peers or managers regarding disability and accommodations causing stress to employees with disabilities although accommodations ‘give people with disabilities some self-worth, the feeling that they can still do something, still contribute, make a difference and that they are valuable’ (p1, f, lower extremity amputation), able-bodied colleagues or managers sometimes clouded these feelings by being judgemental or setting conditions for work performance. for example, participant 8 came to office with his white cane. because of mobility training at the school of the blind that he attended as a child, on condition that he is familiar with his surroundings, ‘i can walk around without my white cane’ (p8, m, partially blind). consequently, his colleagues assumed that he could see. doing things differently versus absconding work obligations participant 6 viewed herself as: ‘[doing] things differently … with devices and technology [and not using disability] as an excuse to not do something [provided that]they see that you bring your part. i think working from home … is not for the sake of convenience … i can rather use that time to work [than struggle with transport because of low vision].’ (p6, f, albinism [low vision including nystagmus]) to the contrary, participant 8, partially blind with 5% vision in both eyes, was taken aback: ‘at one stage, because i don’t use a screen, i only use earphones with my speech software, some of the colleagues went to the manager and said i’m not working because my screen is off, whereas the stats showed otherwise.’ (p8, m, partially blind) participant 5 was reminded not to neglect her duties despite being on sick leave: ‘there were calls that stated that they know that i’m on leave, but i must remember that i am employed by [this university], so, when they call, i must answer’ (p5, f, cerebral palsy hemidystonia [not visually noticeable like hemiplegia]). participant 4 who is accommodated by additional sick leave depicted judgement as absconding work obligations from line managers and is supported by p9: ‘i somehow have experienced that my line management does not really consider this [mental condition] or see this as real … some might see this as a cop out from doing work … they think you are faking it, get over it, go outside, look at how beautiful it is outside … not understanding that it is not about the sun. “get over it, don’t be so down” … they think: no, i just don’t want to work or i am being lazy.’ (p4, f, chronic health impairment and consequent post-traumatic stress) ‘especially line managers don’t really understand the condition and they really don’t know how to manage a person that has got a mental health problem. sometimes the way they try to manage it, is actually making it worse.’ (p9, f, incurable health impairment) favouritism and stigmatisation although participant 13 has debilitating visible mobility challenges, able-bodied colleagues frowned upon an accommodation to knock off work early: ‘it creates a stigma from other employees … the line manager said we knock off at 4 p.m., but i may leave at 3:30 p.m. so that i have enough time. with that special treatment, people didn’t understand for some time when i would leave early, but they will catch up with me on the way to the taxi spot. so, it’s not like i’m being favoured.’ (p13, f, paraplegia) participant 9 living with a serious invisible health impairment found it insensitive when questioned about her reserved parking close to the building: ‘they will say that i am not disabled because i am not in a wheelchair’. participant 6 considered it ‘an us and them thing’. discussion a quotation of a participant that connects most of the encounters, beliefs and ultimate meaning-making by the employees with disabilities is stated as: ‘there are structures, policies, procedures in place. when it comes to the actual people, i don’t see it working’. it shows that many university staff members who must execute the disability management practices essentially posed a challenge to the employees with disabilities’ well-being. ignorance about disabilities contributed to apathetic or negative attitudes and resulted in unresponsiveness regarding accommodation, affecting the participants’ throughput negatively. lack of clarity about access to the splintered services was also a barrier. in response, the participants devised various ways in attaining accommodations and they worked extra hard to avoid workplace exclusion. misconceptions of able-bodied peers or managers regarding disability and accommodations caused psychological stress to the participants. employees with disabilities coping with the university’s disability management practices is mainly a stressful challenge by means of primary appraisal, in particular when anticipating excessive struggles in attaining accommodations, which refers to challenges with potential gain (lazarus & folkman 1984). staff members of the various divisions at the university concerned with accommodation are in the employment of the university. thus, top management has the ultimate responsibility in executing disability management practices. as legislated by south african law and embodied in governmental policies, the learned minds at the university’s top management may not sustain discrimination (potgieter et al. 2017; rsa, department of justice and constitutional development 1996; rsa, department of labour 2002). they also may not sustain hardships (shengli et al. 2022) and workplace exclusion of employees with disabilities (united nations 2006). the attitudes of managers and staff members concerned with disability management were still more often than not apathetic (kleynhans & kotzé 2010) and remained a barrier regarding accommodation (holness 2016; nxumalo 2019; padkapayeva et al. 2017). the perceived high cost of workplace accommodation as example of a negative attitude (schur et al. 2014; shengli et al. 2022; stefan 2002) is evident in a participant’s appeal to either rent her the software or deduct money monthly from her salary. in contrast to the study by kleynhans and kotzé, negative attitudes of immediate colleagues reduced considerably in this study as many of them became trusted support, although others’ lack of knowledge about disability (padkapayeva et al. 2017; shengli et al. 2022) still had adverse effects. a participant confirmed that ignorance, specifically about mental health impairment or conditions, impedes employee accommodations (holness 2016; nxumalo 2019; smith et al. 2022; thornicroft et al. 2022). the participant related that her throughput was affected and that she was being judged as lazy. lack of intervention can increase the risk of negative work outcomes (van hees et al. 2022:173–174). although stigma about mental health conditions as invisible disability is perpetuated in the workplace (shahwan et al. 2022), visible disabilities do not escape stigma as stated by participants and the literature (shengli et al. 2022; waterfield et al. 2018). acquiring assistive devices remained a taxing challenge despite the code of good practice on the employment of people with disabilities (rsa, department of labour 2002), resonating to a 2011 finding that ‘technological aspects of the code were largely unacknowledged, with little effort being made to accommodate the needs of persons with disabilities’ (jakovljevic & buckley 2011:55). according to the participants’ beliefs, they remained marginalised or excluded ‘despite various employment laws’ in south africa that should ensure their full integration in the workplace (nxumalo 2019). they are more likely to be graded as ‘working poor’ (darcy, taylor & green 2016) or less likely to be paid employees (lewis, dobbs & biddle 2013). one of the reasons for lower employment than the stipulated at least 2% of staff members that should comprise employees with disabilities (rsa, ministry for the public service and administration 1995) is that ‘people with disability are discriminated against’ (darcy et al. 2016). some of the participants became frustrated or stood aghast that they were expected to perform as able-bodied employees (bam & ronnie 2020; waterfield et al. 2018). thus, the participants worked extra hard to earn a rightful place in the work environment to prevent being viewed as less capable, less productive and a ‘nonoptimal academic’ (waterfield et al. 2018). the participants were stigmatised because of their supposed inability to compete with able-bodied colleagues (darcy et al. 2016; shahwan et al. 2022; shengli et al. 2022; thornicroft et al. 2022; waterfield et al. 2018). in fending for other employees with disabilities, social cohesion became apparent. recommendations as disability management practices left much to be desired, according to the participants’ appraisals, readdressing these practices should cover the following: compile a single comprehensive online publication containing all the relevant links for both line managers and employees with disabilities regarding the process of obtaining accommodations. all units and services available should be outlined. the online publication should include all the relevant contact details of responsible individuals, frequently updated by the webmaster, and all the relevant forms to be completed, plus specifications, if any, for obtaining various accommodations as well as a function for uploading required motivational documents. any submission by line managers or employees with disabilities or both should be followed by an automated reply acknowledging receipt and containing the procedures involved in the application, as well as relevant contact details including a tracking and tracing number to monitor the progress of the application. applicant employees with disabilities should be informed via return e-mail of outstanding requirements. should the application be delayed, the software programme should automatically flag the concerned superior about the delay, who should then prioritise the matter to the relevant department or departments and monitor feedback. obtain an automated immediate brief survey of employees with disabilities’ feedback following a successful or otherwise application, to determine efficiency or lack thereof. incorporate above employees with disabilities’ feedback as part of internal quality assurance in the university assessment of disability management practices. present certified compulsory continuous professional development sensitivity training for top management, staff members dealing with disability management practices and line managers, coupled with employees with disabilities’ evaluative feedback. conduct further research pertaining to the experiences of employees with disabilities in higher education environments regarding accommodation. this must be in line with the national strategic framework on universal design and access. conclusion there are many challenges that a person with disabilities must go through to secure employment and to keep it. disabilities can, but do not have to, limit an employee’s capability to perform well. employment specialists have the task to ensure that employees with various disabilities are fully accommodated to enable their workforce participation. providing a less stressful workplace for employees would make a difference in changing the dynamic of the organisation. employees with disabilities’ coping with the university’s disability management practices is mainly a stressful challenge by means of primary appraisal, consequently endangering well-being. it refutes south african laws, embodied in policies, and the ratified international crpd. by exploring the coping of university employees with disabilities through accommodations, a gap in the literature was filled. the value of the research lies in the provision of directions that the university must now follow when appointing employees with disabilities. the methodological limitation of this study is that in-depth interviews were used as the primary and only source of data for developing this case study. acknowledgements the author expresses sincere gratitude to each team member of the research project at the particular south african university who not only laid the foundation for prospective individual research articles, but also contributed during various work sessions in, among others, obtaining permission as ethical clearance; compiling an interview schedule; conducting and transcribing interviews; as well as providing scholarly support. without the substantial support of the offices associated with disability at the university, the empirical research could not have been conducted. in addition, the service of the language editor at this particular university is invaluable. the research participants who openhandedly shared intimate details are hailed in particular. competing interests the author has declared that no competing interest exists. author’s contributions a.m.m. is the sole author of the article. funding information the research was funded by the women in research support programme obtained by the principal member of the research project (2020_rpsc_010_rs). data availability the data that support the findings of this study are available on reasonable request from the author, a.m. moll. the data are not publicly 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blonk, r.w.b. & oomens, s., 2022, ‘towards a better understanding of work participation among employees with common mental health problems: a systematic realist review’, scandinavian journal of work, environment & health 48(3),173–189. https://doi.org/10.5271/sjweh.4005 van niekerk, z., maguvhe, m.o. & magano, m.d., 2022, ‘how education, training and development support the wellness of employees with disabilities’, african journal of disability 11(0), a882. https://doi.org/10.4102/ajod.v11i0.882 waterfield, b., beagan, b.b. & weinberg, m., 2018, ‘disabled academics: a case study in canadian universities’, disability & society 33(3), 327–348. https://doi.org/10.1080/09687599.2017.1411251 about the author(s) aimee v. stewart department of physiotherapy, school of therapeutic sciences, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation stewart, a.v., 2025, ‘editorial: african journal of disability 2025’, african journal of disability 14(0), a1825. https://doi.org/10.4102/ajod.v14i0.1825 editorial editorial: african journal of disability 2025 aimee v. stewart copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. this is my first editorial since taking over as the editor-in-chief of the african journal of disability in january 2025. this was an awesome undertaking, and i am certainly standing on the shoulders of all those who conceptualised this journal and got it to the place where it is today. my task, therefore, is to continue their good work and to build on it so that the journal continues to play an important role in disability research. to do that we, the editorial team, must continually ensure that we publish good-quality studies so that the scientific value of the journal continues to rise. by doing so we will continue to attract good researchers in the field of disability studies. we not only want to attract local researchers but also encourage researchers from the rest of the african continent and further afield. in 2025 readers have the choice of reading articles that include the voices of those with disabilities; community-oriented primary healthcare; environmental and work factors affecting those with disabilities and caregiving issues affecting their families. to ensure that our submissions are of good quality, we have introduced appropriate checklists for each kind of study so that authors can do their own checking of their articles. this enables them to see the level of compliance with accepted protocols for different studies. in addition, we are reviewing the type of submissions accepted by the journal to see which are no longer required in a scientific journal and if there could be additional article types that may attract established researchers in this field. we have two special issues planned for this year. they have been carefully reviewed and edited by guest editors who have ensured these special editions will be of interest to our readers. there are: a festschrift for prof. leslie swartz edited by liekeseng ned and brian watermeyer disability, spirituality and belonging edited by chioma ohajunwa we have many submissions as described above that highlight the impact of different situations in rehabilitation, all levels of education and the workplace on those with disabilities. the current situation in south africa and elsewhere on the continent as well as further afield has been well described. the challenge now is what do we do about these situations? what we now need are large-scale intervention studies (with people with disabilities included at all stages of the studies) that describe how different possible interventions to improve the lives of people with disabilities are being tested. in other words, can we as researchers in the field of disability develop interventions that start to make a difference? so, my call to our researchers is to submit intervention studies to the journal to increasingly show the development in improving the lives of those with disability. the obvious next step is the translation of studies into practice. as we reach the end of our publication year, i would like to record my sincere thanks to the section editors for their diligence in organising reviewers and in editing submissions. in addition, the remarkable team at aosis needs my sincere thanks for their ongoing support. finally, to our conscientious reviewers – thank you, as without you there would not be a journal. my best wishes to all our readers, authors, reviewers, section editors and publishers. may next year be even more successful for our journal. abstract background methods results discussion conclusion acknowledgements references appendix 1: interview guide for people with disabilities appendix 2: interview guide for key informants about the author(s) tracey smythe department of clinical research, faculty of infectious and tropical diseases, london school of hygiene and tropical medicine, london, united kingdom thubelihle mabhena pan african treatment access movement, harare, zimbabwe shepherd murahwi leonard cheshire disability zimbabwe, harare, zimbabwe tapiwanashe kujinga pan african treatment access movement, harare, zimbabwe hannah kuper department of clinical research, faculty of infectious and tropical diseases, london school of hygiene and tropical medicine, london, united kingdom simbarashe rusakaniko department of community medicine, university of zimbabwe, harare, zimbabwe citation smythe, t., mabhena, t., murahwi, s., kujinga, t., kuper, h. & rusakaniko, s., 2022, ‘a path toward disability-inclusive health in zimbabwe part 2: a qualitative study on the national response to covid-19’, african journal of disability 11(0), a991. https://doi.org/10.4102/ajod.v11i0.991 original research a path toward disability-inclusive health in zimbabwe part 2: a qualitative study on the national response to covid-19 tracey smythe, thubelihle mabhena, shepherd murahwi, tapiwanashe kujinga, hannah kuper, simbarashe rusakaniko received: 29 nov. 2021; accepted: 29 mar. 2022; published: 30 may 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with disabilities are at higher risk of adverse coronavirus disease 2019 (covid-19) outcomes. additionally, measures to mitigate covid-19 transmission have impacted health service provision and access, which may particularly disadvantage people with disabilities. objectives: to explore the perspectives and experiences of people with disabilities in accessing health services in zimbabwe during the pandemic, to identify perceived challenges and facilitators to inclusive health and key actions to improve accessibility. methods: we used in-depth interviews with 24 people with disabilities (identified through purposive sampling) and with 10 key informants (from expert recommendation) to explore the impact of covid-19 on access to health care. interviews were transcribed, coded and thematically analysed. we used the disability-inclusive health ‘missing billion’ framework to map and inform barriers to inclusive health care during covid-19 and disparities in outcomes faced by people with disabilities. results: people with disabilities demonstrated good awareness of covid-19 mitigation strategies, but faced difficulties accessing covid-19 information and health services. challenges to the implementation of covid-19 guidelines related to a person’s functional impairment and financial ability to do so. a key supply-side constraint was the perceived de-prioritisation of rehabilitation services. further restrictions on access to health services and rehabilitation decreased an individual’s functional ability and exacerbated pre-existing conditions. conclusion: the immediate health and financial impacts of the covid-19 pandemic on people with disabilities in zimbabwe were severe. government departments should include people with disabilities in all communications and activities related to the pandemic through a twin-track approach, meaning inclusion in mainstream activities and targeting with specific interventions where necessary. keywords: disability; covid-19; zimbabwe; qualitative; equity; missing billion; inclusion; health system; health access. background people with disabilities experience inequities in health access and outcomes, and these are potentially magnified with respect to coronavirus disease 2019 (covid-19) (shakespeare, ndagire & seketi 2021a). estimates from the uk show that at least 58% of deaths related to covid-19 between january 2020 and february 2021 were amongst people with disabilities, although they only made up 17% of the population (bosworth et al. 2021). the increased risk of people with disabilities to covid-19 mortality appears to occur for a combination of reasons, including higher risk of contracting the disease (e.g. difficulties socially isolating, lack of accessible guidance on preventing infection) and vulnerability to more severe morbidity (e.g. on average older with more pre-existing conditions and more likely to live in deprived circumstances) (shakespeare et al. 2021). people with disabilities will also often need routine health care, such as a supply of medication and physiotherapy, which may be disrupted because of covid-19, leading to further decreased physical and mental health and functioning (shakespeare et al. 2021b; steptoe & di gessa 2021). limited available data suggests that the impacts of covid-19 on people with disabilities are also noted in low and middle-income countries (lmics), including zimbabwe. for instance, a rapid mixed-methods review on the impacts of covid-19 on people with disabilities and its effect on the health delivery system in zimbabwe found that there were no structures in place in 2020 to accommodate testing of people with disabilities. they had limited access to covid-19 information, and most health delivery services were inaccessible (manikai 2020). organisations of persons with disabilities (opds) were not actively engaged or consulted in the formulation, development or implementation of the national covid-19 response plan (manikai 2020). the report concludes that the barriers to accessing routine health care and the inequity that people with disabilities experience has limited their self-efficacy and further marginalised people with disabilities in zimbabwe. moreover, health workers found implementing the measures particularly difficult without access to water, personal protective equipment (ppe) and daily income (mackworth-young et al. 2021). the devastating economic effect that public health measures such as curfews, bans on transport and lockdowns have on populations that are largely dependent on the informal economic sector were also highlighted (dzobo, chitungo & dzinamarira 2020). there has been a lack of consideration, however, of the experiences of people with disabilities in accessing health care during covid-19 and the impact thereof on health outcomes in zimbabwe, or other lmics. this information is needed to inform how health systems should be strengthened to offer a disability-inclusive covid-19 response. the ‘missing billion’ report (hogan 2020; litullo 2019) (figure 1) provides a framework for how to identify components of the health system that require strengthening in order to provide disability-inclusive health. the framework proposes consideration of barriers and facilitators from the perspective of people with disabilities – ‘demand’ (e.g. affordability), service providers – ‘supply’ (e.g. accessible health facilities) and at the systems level (e.g. leadership). figure 1: preliminary framework of inclusive health systems. evidence is lacking for zimbabwe on what the perceived challenges and facilitators were to inclusive health during the covid-19 pandemic, and key actions to improve accessibility and design of the health system for inclusion. we aimed to explore the perspectives and experiences of people with disabilities in accessing health services in zimbabwe during the pandemic to identify perceived challenges and facilitators to inclusive health and key actions to improve accessibility. methods our methodological approach and consequent reporting were underpinned by the consolidated criteria for reporting qualitative research (coreq) statement, which is a 32-item checklist (tong, sainsbury & craig 2007). study design this qualitative study was undertaken alongside a companion study to understand the access to health services for people with disabilities in zimbabwe prior to covid-19 (smythe et al. in press). this qualitative study focused on experiences and perceptions of people with disabilities in accessing health care during the covid-19 pandemic and key actions to improve accessibility. setting the study was conducted in the capital city harare and rural and urban areas of gutu between 31 may and 12 june 2021. the focus was on the public health sector that primarily services the low-income and informal settlement populations. participants included 24 people with disabilities in gutu and 10 key informants from local and national health authorities in gutu and harare. participants we used purposive sampling to recruit people with disabilities through non-governmental organisations (ngos) and opds. the ngos and opds recommended information-rich cases and provided the researchers with a contact list. people with disabilities were then purposively selected to ensure representation by impairment type or condition (e.g. physical, sensory, intellectual), age (children, working-age, older adults), gender and level of support needed for daily life (e.g. none or minimal, ongoing health care or social service needs, requiring carer support for activities of daily living) (table 1). we used expert recommendation to recruit key informants. key informants were selected based on their pivotal role and experience in disability programming. all participants were approached through telephone calls. two individuals who agreed to be interviewed were subsequently unable to take part in the interviews because of health-related concerns. table 1: demographics of people with disabilities by impairment category†, age and sex. data were collected through in-person interviews at the home of people with disabilities and at the place of work of key informants. the majority of participants were interviewed face-to-face. carer or proxy interviews were used for children below the age of consent (10 years as per national guidelines) and for people with severe difficulties understanding or communicating even with available adaptations (e.g. people with hearing loss, illiterate and with no knowledge of sign language; people with severe intellectual or cognitive impairments). children aged 10 years or older but below the age of consent participated in interviews with parental consent and individual assent. inclusion of people with disabilities was supported through the provision of psychological support services when needed, sign language interpretation, accessible interview sites and transport, use of available district psychological services and researchers skilled at communicating with people with cognitive impairments. data collection interview guides with questions and prompts (appendices 1 and 2) were developed and cognitively tested for understanding and administered in english or shona by trained research assistants. the research assistants were three women with disabilities who had completed tertiary education. they underwent a one-day online training that included presentation of the study protocol and qualitative methods. next, they attended a two-day in-person training on data collection, with ongoing mentoring and support provided by the study team. no interviews were repeated and transcripts were not returned to participants for comment. interviews took between 30 and 60 min and were audio recorded with written consent from the participants. field notes were made during and after the interviews. data management and analysis these processes were the same as for the companion paper (smythe et al., in press). all interviews were transcribed verbatim for analysis and translated into english where necessary. data were managed using nvivo 12. interview transcripts and detailed notes were analysed using thematic analysis (guest, macqueen & namey 2012). a coding framework was developed using the semi-structured interview guide as a starting point, which was adapted to include additional codes and themes emerging from the data. an allied health professional and epidemiologist from zimbabwe, with experience in both qualitative and quantitative research methods (ts) coded the interview transcripts to identify the key themes emerging from the data. these were discussed across the entire team, including the research assistants, and analysis was evaluated by research team members (tm, sm, tk and sr), to ensure that interpretations were credible and valid. regular discussions with the research team took place throughout the data analysis phase to ensure content validity and context. to explore inclusive health practices during the covid-19 pandemic, we applied the missing billion health system framework (figure 1) (hogan 2020; litullo 2019) to map and inform the perceived and experienced barriers and facilitators to health services. we undertook a narrative synthesis of the findings and reported the results alongside the framework. the predominant focus was on the service delivery components of the framework, including the demand and supply-side perspectives. ethical considerations ethical approval for the study was granted from the medical research council of zimbabwe (mrcz) (no mrcz/a/2731) and the institutional review board at london school of hygiene & topical medicine (no 22138 – 2). the main ethical considerations were the same as for the companion study (authors, under review, part 1). we managed participant expectations by describing in detail the nature and detail of our study. we assured confidentiality by not linking any data to particular participants. informed consent was sought after providing a written information sheet and reiterating the information verbally in the language of choice (english or shona). the research assistants facilitated referrals, as necessary, to medical services and/or opds. all interviewees were compensated for their time and transport was reimbursed. results data are presented under the five themes that comprise the missing billion framework (kuper & heydt 2019) on demand and supply side factors for service delivery: demand – autonomy and awareness, affordability; supply – human resources, health facilities, specialised services and assistive technology. table 2 provides an overview of the themes and sub-themes identified. table 2: overview of themes. demand-side factors challenges and facilitators from the perspective and experience of the person with disabilities (i.e. ‘demand-side’) were observed in awareness about covid-19 mitigation, autonomy to implement these strategies, and affordability. demand – autonomy and awareness people with disabilities generally demonstrated good awareness of covid-19 mitigation strategies, and required actions. masking, washing hands and keeping distance from others were most commonly mentioned. these measures were mainly learnt about through the radio, and from community leaders. caregivers spoke of people with hearing impairments facing problems with communication; they were excluded from understanding messaging on the radio, which left them marginalised from the spoken world. in addition, masking created a barrier to communication, where: ‘there is need for lip reading but unfortunately, because of the mask, she cannot read the lips.’ (participant 23) people with visual impairment also reported informational barriers as they were reliant on others to share current information: ‘i cannot see like i used to. it’s frustrating for me because when an emergency message comes on my phone, i can’t read it and i have to wait for someone to return home.’ (participant 21) one of the opds that we interviewed highlighted that people with disabilities had many unanswered questions and did not often know what information to believe. the rumours spread fear and uncertainty, for example: ‘there was fear among them because of the things that were being said about covid-19 and the regulations were imposed on top of that. there are the rumours that covid-19 survives on metallic surfaces for long period of time. people use walking sticks and white canes, and they continuously touch and hold for them for long periods of time. there is a great need for health officials to come and educate us on the actual facts in relation to covid-19.’ (key informant 03) difficulties arose for people with disabilities in the implementation of covid-19 guidelines. many caregivers and people with disabilities experienced exclusion, fear and pain when attempting to follow national guidelines. the demands of physical distancing limited people’s ability to communicate and participate in daily life. people with physical impairment who required a caregiver for mobility experienced greater isolation and limited independence because of caregivers’ fear of being unable to comply with physical distancing guidelines: ‘washing hands after every contact is impossible. social distancing is another challenge. if i’m in a wheelchair and social distance is not possible, then what will law enforcers do to me because i’m not following regulations? this is why most disabled people are not moving, because the ones who are supposed to escort them won’t show up.’ (key informant 03) attempting to adhere to recommendations created pain and discomfort for people with albinism, who have skin that is sensitive: ‘the sanitisers that i have used have burnt my skin. it usually stings when i use sanitiser.’ (participant 22) with regard to the ability to adhere to guidance, the main challenges to implementation of covid-19 guidelines related to a person’s functional impairment and financial ability to do so. physical distancing and self-isolation measures were not feasible for some people with disabilities who relied on caregivers. those that required assistance for daily activities experienced greater anxiety with regard to physical contact with their caregiver, and in relation to fear of transmission of covid-19 through their metal assistive product. for example: ‘i’m very concerned about covid-19. i am always in contact with people who assist me on a daily basis. sometimes those people are not putting on face masks. from what i heard on the radio, people are supposed to sit some distance from each other and not hold hands.’ (participant 17) people with physical impairments who required assistance for mobility experienced limited ability to access water, and people with visual impairments voiced concern about whether the water would be clean or not: ‘whilst i have the knowledge, i need help to implement the guidelines with someone who is careful because i cannot see.’ (participant 06) caregivers reported that explaining mitigation strategies to people with intellectual impairment was challenging and often unsuccessful: ‘if i give her a mask to wear, she usually tears it off.’ (participant 13) ‘you talk of persons with intellectual disabilities who are not able to interpret simple instructions like telling them to wear a mask. it doesn’t make sense to them; why should they be wearing a mask and why wear it daily?’ (key informant 10) the lack of access to transport to attend hospital check-ups and the presence of roadblocks to minimise movement led to additional challenges for people with disabilities and impacted their functioning. while the restrictions were the same for everyone, the ability to follow these measures was further limited by administration requirements to access transport. this difficulty was also reported by many opds. one representative highlighted: ‘it was difficult for our clients to get authorisation to travel, either to travel to access health services at health centres … they had to go to the headman or chief to get a letter.’ (key informant 10) regarding the perceived excess risks of covid-19, people with disabilities viewed the risk of contracting covid-19 differently, and this perception depended on their social contact, beliefs about their physical strength, the state of their immune systems, and the extent to which they were reliant on others for daily care. those who were already isolated did not perceive covid-19 as a greater risk than people without disabilities, and they reported spending most of the day alone and with no meaningful activity and contact with other individuals: ‘my chances of getting it are reduced because i do not usually meet up with people. i don’t often leave my home so i do not meet a lot of people.’ (participant 15) ‘it [the excess risk] is not high because most of the time i’m alone at home.’ (participant 21) the pandemic highlighted the extent of how fragile the social bonds for people with disabilities were, and a key feature was perceived personal vulnerability because of being reliant on others. participants felt an extra burden of responsibility to protect themselves and their own health, whilst the perception was that people without disabilities may not adhere to covid-19 regulations as required: ‘i am at the mercy of other people. maybe what they may do to me is not what is required during this period of this disease.’ (participant 19) however, vulnerability was felt more acutely by those who perceived their bodies to be weaker: ‘this disease has troubled us, especially us, who have disabilities and other diseases. all i can say is that it is time for the survival of the fittest.’ (participant 18) anxiety and strain were also experienced by caregivers who perceived people with disabilities as being at greater risk of contracting covid-19, as summarised by the following quotes: ‘he does not know that he has to wear a mask. he may become exposed; that is where my concern is.’ (participant 01) ‘i do not feel comfortable leaving him with his peers. he does not communicate well and this might increase his risk in contracting covid.’ (participant 14) ‘he is at a high risk because there is not much he can do without being assisted by me or anyone else … he needs help to eat, to wash his hands or to be generally more comfortable.’ (participant 16) ‘she does not know the signs, and if she gets to a place with many people who cannot communicate with her to warn her, she might get infected.’ (participant 20) this meant that additional strain was experienced by caregivers as they did not rely on external help. the perceived need to keep people with disabilities safe created pressure for families. demand – affordability lack of affordability created tensions between public health advice and the ability to practise them effectively: ‘i have to take the money for a mask from my budget, and sometimes there won’t be any sugar or salt in the house.’ (participant 02) when asked what is used when there is no soap, one person with disability replied that where water was scarce or inaccessible that ‘we use ashes’ (participant 23). people with disabilities felt forgotten and alone when faced with the additional challenge of having to prioritise their general health and prevent further impairment against that of covid-19 prevention measures: ‘there is no money, my medication for my eyes needs us$3 at the pharmacy, there is no way i will ask for a sanitiser whilst i have problems with my eyes. i would rather be fighting for my eyesight so that i will not be blind forever.’ (participant 21) increased pressures on social protection schemes intensified economic and social exclusion of persons with disabilities. people with disabilities believed that their livelihoods were disproportionately impacted and this was reinforced by the experiences of opds: ‘before the pandemic there were people who needed food, but the number has increased because of the pandemic…it means the competition is stiffer.’ (key informant 05) livelihoods were linked to quality of, and ability to access health services. whilst some health services were offered for free at clinics, ngos and representatives for mission hospitals no longer came to local clinics, and if medications or services were not available, people with disabilities had no other option because of their limited ability to pay. people with disabilities experienced a disproportional impact and consequences of the already inadequate health systems. supply-side factors challenges and facilitators from the perspective of the health system (i.e. ‘supply-side’) were observed in human resources, appropriate health facilities and specialised services. supply – health facility availability measures to mitigate covid-19 transmission have directly and indirectly impacted health service provision and access, including through supply chain disruption and diverting resources. people with disabilities believed that their needs did not matter as restrictions mandated by the government, which were aimed at stemming the spread of covid-19, severely limited their access to basic health services: ‘during covid it was difficult to go for a check-up … they only wanted people who were seriously ill.’ (participant 22) health care provider attitude and competence emerged as factors influencing the perceived supply of health services. people with disabilities avoided seeking health services due not only to fears of becoming infected with covid-19 and the punitive action for breaching measures such as movement restrictions, but also as a result of the poor interpersonal relationship with health care providers: ‘we were scared but travelling during that time was even scarier. other people informed us that it was pointless to go to the hospital because nurses were said to be reluctant to serve people and consulted people from a distance.’ (participant 17) greater disruptions in other medical supply chains further limited health service provision: ‘the hospital is also struggling to get transport to collect certain important resources.’ (key informant 05) supply of medications were limited at source, and opds no longer received their regular donations: ‘before the covid pandemic started we used to get a variety of stuff, including sunscreen, from different organisations … but when covid started, all that aid stopped being availed.’ (key informant 01) different mitigation strategies were implemented to overcome these gaps in availability. for instance, community support and ‘togetherness’ was key to being able to access basic health needs: ‘since most of us could not manage to go to gutu, our disability group leader suggested that we contribute money and send one person there to collect pills for everyone. then the pills would be distributed among us when that person returned.’ (participant 15) there were some examples where the health services helped overcome these issues by strengthening outreach to the community: ‘our mobile clinic and our general model of operation ensured that people had art medication throughout the pandemic and hiv testing was available to whosoever desired it without interruption during the covid era.’ (key informant 04) supply – specialised services and assistive technology rehabilitation services were deprioritised because of the covid-19 exposure risk to patients and staff: ‘rehabilitation centres were not available because they involve a lot of physical contact, so the government dissuaded people from running operations during the pandemic’ (key informant 10). however, the services remain limited as ‘community rehabilitation is not being practised these days because of lack of resources’ (key informant 05). the need for assistive products and interventions that can optimise functioning do not stop because of covid-19, yet services to provide these have been reduced: ‘when covid started, things changed; i stopped going for physiotherapy.’ (participant 25) this reinforced the belief of people with disabilities that their lives are less valued in zimbabwe society, as demonstrated by the following quotes: ‘after being looked down upon, this type of treatment also reduces the confidence of disabled people’ (key informant 01), and ‘we feel like the government is not interested in addressing the needs of people with disabilities. ngos come here and they don’t include us either’ (key informant 03). outcomes and impact on functioning all participants raised concerns that a singular focus on prevention and treatment of covid-19 led to a severe disruption in medical treatment, health services and rehabilitation. long periods of isolation heightened mental health, economic and financial pressures, and all people with disabilities that we spoke to shared a belief that they experienced worsening health and well-being during this time: ‘when the seizures come again because of not taking pills, the seizures are more powerful. there are times when i would spend more than a week not knowing where i was or what i was doing, or times when i went for two or three days without eating because of powerful seizures.’ (participant 15) people with disabilities reported experiencing burns from uncontrolled seizures near open fires, worsening eyesight without access to glaucoma medication (via eye drops that reduce eye pressure and thereby protecting the optic nerve) and poorer mental health as a result of psychiatric medications being unavailable at clinics and unaffordable at private chemists. the well-being of people with disabilities was also affected, and they reported increased fear and anxiety that centred around medical stockouts and deterioration of their pre-existing condition: ‘when i don’t have pills, i fear going to the garden or doing other tasks by myself. an epileptic episode can occur anytime, and i may collapse. fetching water or cooking on fire is daunting for me.’ (participant 12) the national covid-19 response limited access to both general health care and rehabilitation, which exacerbated pre-existing conditions and decreased the functional abilities of people with disabilities. discussion the immediate health and financial impacts of the covid-19 pandemic on people with disabilities have been disproportionate and severe. our study has highlighted inequities in society and structural shortcomings within zimbabwe where the needs of people with disabilities have not been protected in rural or urban areas. while people with disabilities demonstrated good awareness of covid-19 mitigation strategies, demand was limited by difficulty accessing covid-19 information and health services. a person’s functional impairment and socio-economic status were barriers to implementation of covid-19 guidelines. supply was constrained by perceived de-prioritisation of rehabilitation services; people with disabilities felt abandoned and forgotten and experienced heightened fear and anxiety. further restrictions on access to health services and rehabilitation decreased their functional ability and exacerbated pre-existing conditions. uncertainty in outcome or standard of care emerged as a key recurring experience, which created distress, a sense of fear and a loss of hope. further deprioritising people with disabilities during the covid-19 pandemic has heightened their marginalisation and experiences of inequity. barriers to accessing care were similar to non-pandemic times (authors, under review, part 1), where the demand for health services was limited by health literacy affordability of services, and supply of health services was constrained by perceived poor capacity of health workers to treat people with disabilities, discrimination and inaccessible information and infrastructure. this study found that these everyday barriers were heightened during the pandemic, for example, where physical accessibility affected implementing basic hygiene measures. our data call attention to the exclusion of people with disabilities and suggest that many people with disabilities and their families have felt abandoned and forgotten during the pandemic, similar to other findings globally (shakespeare et al. 2021). people with disabilities have not been considered or involved in planning of measures taken to contain the covid-19 pandemic. a qualitative analysis of media from ghana, guinea, liberia, niger, nigeria and sierra leone found that people with disabilities were often not consulted during policymaking and thus were deprived from effectively benefitting from the special initiatives that governments took to fight covid-19 (saalim et al. 2021). this is a pattern that has been repeated (kuper et al. 2020; reichenberger et al. 2020; shakespeare et al. 2021a, 2021b). our key findings are similar to those in south africa, where exclusion of people with disabilities was exacerbated by the national covid-19 response (ned et al. 2020). key disability-specific health services were not considered as essential services during the initial stages of lockdown, and people with disabilities experienced limited healthcare and rehabilitation access, which was influenced by structural failings (mckinney, mckinney & swartz 2021). a qualitative study in uganda found that the national covid-19 response limited access to health and rehabilitation services for children with disabilities and called for greater attention to this marginalised group and their families when implementing mitigation measures and long-term responses (mbazzi et al. 2021). the need for additional support and targeted mental health services was highlighted by the impact of covid-19 on anxiety and depression. during the first covid-19 lockdown in zambia and sierra leone, a survey of 468 children and young people who have disabilities and are disadvantaged found that participants had increased anxiety and fear (sharpe et al. 2021). in ethiopia, a high prevalence of depression, anxiety and insomnia was found in 423 respondents of a survey of people with disabilities (necho et al. 2021) and these findings are echoed in the uk, where people with physical disabilities were found to be at particular risk for emotional distress, poor quality of life and low wellbeing during the covid-19 pandemic (steptoe & di gessa 2021). with regard to meeting daily needs, the survey in zambia and sierra leone (sharpe et al. 2021) also showed that nearly 91% of participants reported that they needed considerable additional support with regard to finance, food and schooling. people with disabilities in the uk also experienced difficulty in meeting their daily needs (shakespeare et al. 2021b). in uganda, families of children with disabilities had difficulties meeting daily basic needs as they were unable to work and had no income during the covid-19 related lockdown (mbazzi et al. 2021). despite these findings on impact on healthcare and rehabilitation access, mental health and meeting everyday needs, there remain gaps in evidence. while there is evidence for impact on mortality for the uk, where 58% of deaths related to covid-19 between january 2020 and february 2021 were amongst people with disabilities, although they only made up 17% of the population (bosworth et al. 2021), data are limited in other settings. there is a lack of data being collected at national and international levels on impacts on people with disabilities, both in terms of infection and mortality rates, and the impact on poverty, employment, education and isolation in the community (meaney-davis 2020). our study has limitations that need to be considered when interpreting the results. this is a qualitative study, limited to a modest-sized group of people with disabilities living in rural and urban areas of zimbabwe. a larger sample could have improved inter-group comparisons (e.g. differences between age groups) and generalisability to different health system contexts. nevertheless, checks were in place to strengthen the integrity of data and interpretations, which included researchers with disabilities being trained to undertake the qualitative data collection, which likely improved data quality through strengthening the rapport of the interviewer and participant. however, the interviewers may also have brought their own biases to the interview, based on their personal experiences. additionally, no interviews were repeated nor transcripts returned to participants for comment, and all the transcripts were coded by a single coder. we therefore had several checks in place to strengthen the integrity of data and interpretations. these included involving research assistants, who collected the interviews in data analysis and interpretation, and ongoing discussions amongst the whole team throughout data collection and analysis, particularly on our positionality and reflexivity. the missing billion framework provided a structure for consideration of challenges and solutions to inclusive health. we used this framework to consider demand and supply-side service delivery factors in this study but did not address systems-level factors such as governance and leadership. strengths of our study include that face-to-face interviews were possible within the timeframe of the national covid-19 response. we achieved both breadth and depth of functional impairment and age range. there are many important lessons that are being learned on how to create a disability-inclusive covid-19 response, including in low-resources settings. government departments should meaningfully engage people with disabilities or their representative organisations to facilitate appropriate planning. a twin-track approach that addresses the general population needs as well as the specific needs of people with disabilities is required to include people with disabilities in all pandemic response communications and activities. this includes providing public health communication, including information on covid-19 prevention and government response measures in accessible formats. identifying and removing barriers to prevention measures for covid-19 may include measures such as providing additional support and equipment to carers of people with disabilities. collecting and analysing disability-disaggregated data, and gathering lessons learned on what works in disability inclusion in covid-19 responses will inform financial measures and economic planning. finally, strengthening referral of people with disabilities to social protection schemes will facilitate food and other distribution from accessible locations. conclusion people with disabilities are a diverse group and are disproportionately impacted by covid-19, both directly because of infection and indirectly because of restrictions to reduce the spread of the virus. access to health care was limited in both rural and urban areas in zimbabwe because of supplyand demand-side barriers. seizing opportunities to prevent people with disabilities being further left behind and building on decades of progress on disability rights and economic empowerment may mitigate the widening of health inequalities in zimbabwe. acknowledgements we would like to thank florence saburi for her support in data collection as well as the community health projects for their support to this project. we also thank participants for their willingness to share their experiences with us. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions h.k. and s.r. conceptualised the study. s.m. and t.m. led data collection. t.s. conceptualised and led writing and analysis of this manuscript supported by h.k. t.m., s.m., t.k., h.k. and s.r. contributed to serial drafts of the study. all authors read and approved the final manuscript funding information funded by ahrc, grant ref: ah/v01353x/1. the arts and humanities investigate the values and beliefs which underpin both who we are as individuals and how we undertake our responsibilities to our society and to humanity globally. the funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. data availability the datasets generated and analysed during the current study are not publicly available, as the small number of people with disabilities makes data potentially identifying, but are available from the corresponding author on reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references bosworth, m.l., ayoubkhani, d., nafilyan, v., foubert, j., glickman, m., davey, c. & kuper, h., 2021, ‘deaths involving covid-19 by self-reported disability status during the first two waves of the covid-19 pandemic in england: a retrospective, population-based cohort study’, lancet public health 6(11), e817–e825. https://doi.org/10.1016/s2468-2667(21)00206-1 dzobo, m., chitungo, i. & dzinamarira, t., 2020, ‘covid-19: a perspective for lifting lockdown in zimbabwe’, the pan african medical journal 35, 13–13. https://doi.org/10.11604/pamj.2020.35.2.23059 guest, g., macqueen, k. & namey, e., 2012, 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disadvantaged children and young people: evidence from a cross-cultural study in zambia and sierra leone’, bmc psychology 9, 79. https://doi.org/10.1186/s40359-021-00583-w smythe, t., mabhena, t., murahwi, s., kujinga, t., kuper, h. & rusakaniko, s., in press, ‘a path toward disability-inclusive health in zimbabwe part 1: a qualitative study on access to healthcare’, african journal of disability 11(2022). steptoe, a. & di gessa, g., 2021, ‘mental health and social interactions of older people with physical disabilities in england during the covid-19 pandemic: a longitudinal cohort study’, the lancet public health 6(36), e365–e373. https://doi.org/10.1016/s2468-2667(21)00069-4 the missing billion initiative, good practice compendium, viewed n.d. from https://www.themissingbillion.org/new-index tong, a., sainsbury, p. & craig, j., 2007, ‘consolidated criteria for reporting qualitative research (coreq): a 32-item checklist for interviews and focus groups’, international journal for quality in health care 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042 appendix 1: interview guide for people with disabilities purpose: to gain insights into people with disabilities’ access to health care services and their experiences when accessing or receiving care. materials: notepad and pen/s tape recorder introduction: good morning/afternoon. my name is _____________. i am representing zapp/patam/lc in conducting a research entitled: building back better: disability-inclusive health as a legacy of the covid-19 pandemic in zimbabwe. you are invited to participate as a key informant as an individual with disability to share your experiences so that we can gain insights into people with disabilities’ access to health care services and their experiences when accessing or receiving care. this guide will be provided with the information and consent sheet. your responses will be treated with utmost confidentiality and your name and identity will remain anonymous. if you have questions about this research please feel free to ask any questions. you are free not to answer any questions you feel you can’t and also to stop the interview. thank you in advance for your co-operation. the interview will take 30–60 min. go through information sheet and ethics, confirm consent. background information interview date and time interviewer language of interview interview location (home, etc.) town/state gender male female age marital status type of disability general observations: (anything which might impact how the interview is conducted, e.g. other present.) a. about themselves: 1. please tell me about yourself (work, study, family, what is your routine generally like) 2. please tell me about your family/household. prompts: sources of income? is there anyone else in the household who has major illness or disability? if so, who and what is their condition? b. about disability: now we are going to talk about your disability/impairment, and feel free again not to answer what you can’t answer and/or stop this interview. 3. please tell me about your impairment. prompts: time of onset? if appropriate, ask what happened? 4. do you need help to do the things you need to do every day? if so, do you receive any help or support from family or friends? what kind of support? prompts: daily activities such as going to the bathroom, dressing, eating, going out – who helps or supports them and how? if yes, who and how? if not, why do you think that is? c. health status and seeking services: 5. how would you describe your health at this time? prompts: do you have any health concerns? what is the main one that worries you? what are any co-morbidities you might have due to/caused by your impairment (if applicable)? d. coronavirus now i would like to know more about your awareness of coronavirus. 6. have you heard of covid-19 or coronavirus? [describe/use terms used locally as needed. if no knowledge of covid-19, skip to next section] 7. how concerned are you about covid-19/coronavirus? prompts: what are your concerns? 8. do you think you are more at risk, less at risk or have the same risk as getting coronavirus or having serious illness from coronavirus compared to other people? why? 9. what have you heard about ways you can protect yourself and others from getting coronavirus? what measures, if any, are you taking to protect yourself from coronavirus? prompts: (alter based on national policies/advice from local authorities): social distancing? self-isolating? frequent hand-washing? wearing masks? follow-up question/probe: for each measure mentioned but not done: you mentioned [preventative measure] is a way to prevent getting coronavirus. what challenges, if any, do you face in following this? what, if anything, would help you to do [preventative measure]? follow-up question/probe): for each measure followed: please tell me more about how you are doing this. what challenges, if any, do you face following this? what or who has helped you follow this? 10. have you had coronavirus? if so, please describe your experience. e. coronavirus and health care seeking now i would like to know more about your needs and activities, and whether these have changed since the new rules/arrangements because of covid-19. so, for each, i would like you to think of a normal w eek before covid-19, and then think about this week… 11. your impairment-related health needs (including rehabilitation, specialists etc) • before prompts: what types of health services or products (e.g. medications, assistive devices such as a wheelchair, walking stick, hearing aids, etc.) do you use on a regular basis for your impairment? how do you typically access these? if you do not use these services, why not? (e.g. don’t need them, cannot afford, don’t know how to access them). now prompts: still able to access the same health services/products for your impairment? if no: how have you been managing without these services/products? what challenges have prevented you from accessing these services/products? if yes: what, if any, challenges have you faced accessing these services/products? what, if anything, has helped you maintain access to these services/products? 12. any general health needs (including gp, pharmacy etc) • before prompts: what types of health services or products (e.g. medications) do you use on a regular basis for your general health? how do you typically access these? thinking of a recent experience (pre-covid), could you tell us step-by-step? how do you get to the clinic? at the clinic: how was physical accessibility, signage, experience of health care providers, price, equipment for their specific needs, denied care/treated differently from other patients? what worked well and what was difficult? have you ever been ill and didn’t access health services? why? focus on last two times. after prompt: still able to access the same health services/products for your general health? if no: how have you been managing without these services/products? what challenges made it difficult for you to access these services/products? if yes: what, if any, challenges have you faced accessing these services/products? what, if anything, has helped you maintain access to these services/products? f. overall thoughts on access to health care services: 13. do you feel that your health care needs are met? prompts: what does having access to health care mean? do you think that your health care needs are the same or different from people who don’t have your impairment/disability? do you feel you receive the same or different quality of health care services as others? do you feel you are treated same or differently? 14. do you have any thoughts on what can make it easier for you to seek or access health care services (examples: physical access, training of health care workers, treatment options, social interactions, education materials, financial support, etc.)? g. other information: are there any other important issues which we haven’t covered which you would like to comment on or that you feel are important to addressing access to health care for people with disability? thank you thank you for taking the time to talk with me/us today. we have learned a great deal from you and your experiences. if you have any questions from our discussion please feel free to ask them. appendix 2: interview guide for key informants introduction good morning/afternoon. my name is __________________. i am representing zapp/patam/lc in conducting a research entitled: building back better: disability-inclusive health as a legacy of the covid-19 pandemic in zimbabwe. you are invited to participate in as a key informant as an individual with disability to share your experiences on disability to build the evidence base that characterises the impacts of the coronavirus pandemic amongst people with disabilities. this guide will be provided with the information and consent sheet. your responses will be treated with utmost confidentiality and your name and identity will remain anonymous. if you have questions about this research please feel free to ask any questions. you are free not to answer any questions you feel you can’t. thank you in advance for your co-operation. the interview will take 30–60 min. code number interview date and time interview venue and location interviewer interviewee job title organisation section 1: key informant background i’m now going to ask you some questions about your background. 1. please tell me more about your role as [job title]. prompt: what activities do you do in this role? 2. how, if at all, has your work been affected by covid-19? prompt: changes in types or way of doing activities? 3. is your organisation involved in covid-19 response (either direct – e.g. prevention, treatment; or indirect – e.g. economic responses)? if yes: in what ways? do you think people with disabilities are adequately included? why/why not? section 2: covid-19 impact and responses i’m now going to ask you some questions about the impact of covid-19 on different areas of daily life that people in your area may have experienced. [note to interviewers: start by asking about all people and then focus in on people with disabilities] 4. what challenges, if any, have people faced in following covid-19 prevention measures (e.g. social distancing, staying at home, handwashing/hygiene practices)? are the challenges the same or different for people with disabilities? if different, explain in what ways? 5. what do you think has been the impact of covid-19 on… [note to interviewers: focus on key informant’s area of expertise. for each, explore how these do or do not differ compared to people without disabilities. clarify if these were existing challenges or new/made worse due to covid-19] a. work (and other livelihood activities)? • is this impact the same or different for people with disabilities? if different, in what ways? • [if an impact for people with or without disabilities]: what, if any, policies/programmes /solutions are being implemented to address this? if yes: what are the strengths/weaknesses of this programme? are these strengths/weaknesses the same for people with disabilities compared to people without disabilities? why/why not? ◦ do you think this programme/policy/activity meets the needs of people with disabilities? why/why not? (probes: type of service adequate? method of delivery? how people access it?) if none: what do you think would be helpful in addressing this? how, if at all, would this need to be adapted to include people with disabilities? probes: type of service? way service delivered? b. school? • is this impact the same or different for people with disabilities? if different, in what ways? • [if an impact for people with or without disabilities]: what, if any, policies/programmes/solutions are being implemented to address this? if yes: what are the strengths/weaknesses of this programme? are these strengths/weaknesses the same for people with disabilities compared to people without disabilities? why/why not? ◦ do you think this programme/policy/activity meets the needs of people with disabilities? why/why not? (probes: type of service adequate? method of delivery? how people access it?) if none: what do you think would be helpful in addressing this? how, if at all, would this need to be adapted to include people with disabilities? probes: type of service? way service delivered? c. accessing health care (e.g. doctors, hospitals, pharmacy)? • is this impact the same or different for people with disabilities? if different, in what ways? • [if an impact for people with or without disabilities]: what, if any, policies/programmes/solutions are being implemented to address this? if yes: what are the strengths/weaknesses of this programme? are these strengths/weaknesses the same for people with disabilities compared to people without disabilities? why/why not? ◦ do you think this programme/policy/activity meets the needs of people with disabilities? why/why not? (probes: type of service adequate? method of delivery? how people access it?) if none: what do you think would be helpful in addressing this? how, if at all, would this need to be adapted to include people with disabilities? probes: type of service? way service delivered? d. ability to get food and other essentials? • is this impact the same or different for people with disabilities? if different, in what ways? • [if an impact for people with or without disabilities]: what, if any, policies/programmes/solutions are being implemented to address this? if yes: what are the strengths/weaknesses of this programme? are these strengths/weaknesses the same for people with disabilities compared to people without disabilities? why/why not? ◦ do you think this programme/policy/activity meets the needs of people with disabilities? why/why not? (probes: type of service adequate? method of delivery? how people access it?) if none: what do you think would be helpful in addressing this? how, if at all, would this need to be adapted to include people with disabilities? probes: type of service? way service delivered? e. social care needs (e.g. personal assistance, social protection) • is this impact the same or different for people with disabilities? if different, in what ways? • [if an impact for people with or without disabilities]: what, if any, policies/programmes/solutions are being implemented to address this? if yes: what are the strengths/weaknesses of this programme? are these strengths/weaknesses the same for people with disabilities compared to people without disabilities? why/why not? ◦ do you think this programme/policy/activity meets the needs of people with disabilities? why/why not? (probes: type of service adequate? method of delivery? how people access it?) if none: what do you think would be helpful in addressing this? how, if at all, would this need to be adapted to include people with disabilities? probes: type of service? way service delivered? f. impairment-specific health care (e.g. rehabilitation, medications, psychiatry) • what, if anything, has been the impact? • [if an impact] what, if any, policies/programmes/solutions are being implemented to address this? if yes: what are the strengths/weaknesses of this programme? ◦ do you think this programme/policy/activity meets the needs of people with disabilities? why/why not? (probes: type of service adequate? method of delivery? how people access it?) if none: what do you think would be helpful in addressing this? g. impact on any other areas? section 3: wider context 6. do you feel that the needs of people with disabilities have been adequately considered by the government/programme implementers during the covid-19 epidemic? why/why not? 7. is there anything else you would like to say about the impact of the coronavirus epidemic on people with disabilities? abstract introduction statement of the research problem purpose of the study research methodology study setting study population sampling technique sample size data collection data analysis trustworthiness findings themes discussion conclusion recommendations acknowledgements references about the author(s) sharifa moosa-tayob department of health studies, college of human sciences, school of social sciences, university of south africa, pretoria, south africadepartment of occupational therapy, school of health care sciences, sefako makgatho health sciences university, pretoria, south africa patrone r. risenga department of health studies, college of human sciences, school of social sciences, university of south africa, pretoria, south africa citation moosa-tayob, s. & risenga, p.r., 2022, ‘challenges of caregivers providing care to children with disabilities at non-governmental organisations in tshwane townships, south africa’, african journal of disability 11(0), a930. https://doi.org/10.4102/ajod.v11i0.930 original research challenges of caregivers providing care to children with disabilities at non-governmental organisations in tshwane townships, south africa sharifa moosa-tayob, patrone r. risenga received: 26 aug. 2021; accepted: 29 apr. 2022; published: 28 july 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: caregivers of children with disabilities are vital stakeholders when it comes to safeguarding the health, well-being and overall survival of the children that they care for. caregivers, however, face many challenging conditions that make it difficult for them to optimally fulfil their caregiving role. understanding these challenges is crucial for developing empowerment programmes for caregivers, which will ensure that children with disabilities receive comprehensive, optimal care and that caregivers experience a good quality of life. objectives: the aim of this study was to explore and describe the experiences of caregivers providing care to children with disabilities at non-governmental organisations (ngos) in townships of tshwane, south africa. method: this study followed an exploratory, descriptive and contextual research design within a qualitative methodology. the population in this study included caregivers who care for children with disabilities at ngos (n = 10). participants for the study were selected using the purposive sampling technique. data were collected by conducting semistructured interviews with caregivers. data were analysed according to the six phases of thematic analysis proposed by. results: the study revealed six themes that represent the challenges experienced by caregivers, namely (1) initial impressions, (2) rendering care, (3) stress, (4) lack of outside support, (5) coping and (6) poor community recognition. conclusion: support from the departments of health and social development and other institutions providing community rehabilitation services to townships should be provided to caregivers in order to empower them with skills and knowledge to effectively address the challenges they face so that they can render optimal care to the children they care for. contribution: results of this study could assist in ensuring improved recognition, resilience and supportive resources for caregivers in collaboration with community based rehabilitation stakeholders in the community that would ultimately lead to improved care for children with disabilities in townships within south africa. keywords: non-governmental organisations; caregivers; children with disabilities; caregiver challenges; tshwane townships. introduction south africa is amongst the 193 countries that have taken on the responsibility of fulfilling their responsibilities under the convention on the rights of persons with disabilities. included in this responsibility is to ensure that all children, including children with disabilities, enjoy the rights afforded to them without any discrimination (united nations children’s fund [unicef] 2013). according to the united nations (un), approximately 250 million of the 600 million individuals globally who have a disability are children, and approximately 10% of children have a disability where long-term caregiving and prolonged access to health care are needed (unicef 2013). the global prevalence of disabilities ranges between 12% and 15%, with a distinct difference between developed and developing countries (mitra & sambamoorthi 2014). most low-income countries have limited services available to families and children with disabilities, which results in many children with disabilities being neglected or underserved (oskoui et al. 2013). according to the world health organization (who) and world bank (2011), globally, 1 billion people have some type of disability, with 80% of people with disabilities residing in developing countries. most disabilities are lifelong disorders, which therefore have no cure (bolster et al. 2017). there are, however, various interventions available which lessen the effect of disabilities and improve the quality of life of those affected by disabilities (bolster et al. 2017). accurate data on the prevalence of children with disabilities in south africa are difficult to establish; however, data that were last gathered during the 2011 national consensus revealed that approximately 2.1 million children in south africa have a disability, thus making the prevalence of children with disabilities in south africa to be 11.2% (statistics south africa [stats sa], 2014). the highest prevalence of children with disabilities in south africa was found in the age group 0–4 years, as 28.0% of children in this category were found to have a disability. the category of children aged 0–9 years had a prevalence of disability that was less than half of those in the 0–4 years category, as 10.0% of children in this age category were classified as having a disability (stats sa, 2014). in developing countries, many children with disabilities are cared for by caregivers in areas that are underdeveloped and have restricted access to training and skills development to optimally care for them (bizzego et al. 2020). this results in a situation where children with disabilities receive inadequate care that directly affects their functional performance. the term ‘ngo’ was created by the un when they desired to consult with non-profit organisations (npos) and the private sector, who were not dependent on the government. the un defines a non-governmental organisation (ngo) as: [a]ny non-profit, voluntary citizens’ group which is organized on a local, national or international level. task-oriented and driven by people with a common interest, ngos perform a variety of services and humanitarian functions, bring citizens’ concerns to governments, monitor policies and encourage political participation at the community level. (teegen, doh & vachani 2004: 466) mostashari (2005) categorises ngos into two groups: (1) non-governmental organisations that have to acquire resources to sustain the programmes they run and (2) ngos that take on the main role of advocacy and are governed by a board that has the function of capacity-building and development of management and governance tools. according to statistics south africa (2014), south africa had a registered number of 127 000 registered ngos and 50 000 unregistered ngos. non-governmental organisations in south africa differ in size and in the services they offer. to function effectively, ngos have to collaborate with the government and other stakeholders. the centre for child law (2017) states that ngos for children with disabilities offer value services to children who are differently abled; however, these ngos are not equipped with adequate resources to provide quality care. a caregiver can be any individual who renders care to a person who is unable to care for himself or herself. caregivers can provide services that are either formal or informal. informal services are those services rendered by caregivers that are not remunerated. formal services provided by caregivers are remunerated and can be provided to anyone who has psychological, physical or developmental needs (musich et al. 2018). capri et al. (2018) adds that a caregiver is one who supports care recipients in performing their basic activities of daily living. li and song (2019) categorise caregivers into two main categories, namely formal caregivers and informal caregivers. formal caregivers receive remuneration for their services and are employed by individuals or institutions such as an ngo. informal caregivers provide care to care recipients without being remunerated. a prerequisite for formal caregivers is that they have to have received some training in their field of practice. ku, liu and wen (2013) view formal caregivers as health care professionals. the caregiver role is a role with numerous duties and obligations towards the care recipient. the alzheimer’s society of york (2018) states that the caregiver role could be very overwhelming as it is active, intense and encompassing of many duties. this is supported by walga (2019), who found the caregiving role to be very demanding as all the tasks expected by caregivers to implement place a great deal of responsibility on the caregivers. geiger (2012) defines the basic roles for caregivers who care for children with disabilities as major and minor basic roles. major roles entail caring for the children’s basic essential needs such as feeding, bathing and giving medication. minor roles include stimulation and exercise to ensure optimum development (geiger 2012). science care (2015) acknowledges that the caregiving role is demanding as it involves countless roles and responsibilities. it includes providing basic care, to care recipients and the administering of medication. the act of caregiving could be a very rewarding experience for caregivers and could also be an experience that results in undesirable consequences for the caregiver (jones et al. 2011). caregiver burden is described as the emotional, physical, social and financial implications of providing care to people with disabilities and illness (diameta et al. 2018). caring for children with disabilities places persistent psychological and physical demands on the caregiver, which could result in the caregiver experiencing high levels of stress. as a direct result of caregiving, caregivers providing care to children with disabilities experience many stressors; however, they lack the ability to apprise and cope with stressors, which has a negative effect on the caregivers’ physical and mental health and overall functioning. the psychological stressors caregivers experience often manifest themselves not only in psychological problems but in physical problems as well, which all affect the quality of life for these caregivers. the caregiving role often causes physical and psychological stress for the caregiver. theofilou (2012) explored the psychological effects of caregiving and found that caregivers experience symptoms such as depression, anxiety, guilt, anger, insomnia, generalised muscle pain and headaches. phillips et al. (2016) infers that caregivers who are in a poor physical and psychological state are at a higher risk of providing poor quality care to care recipients. recognition of caregivers by community members is regarded as an extrinsic reward to caregivers (akintola 2010). caregivers being undermined by the community and not receiving the recognition they deserve cause caregivers’ discontent (schneider 2020). caregivers need inclusive programmes that empower them to render effective care to the individuals for whom they care. it is therefore crucial that caregivers receive recognition and support to render optimal care for children with disabilities (the alzheimer’s society of york 2018). caregiver preparedness denotes the readiness of a caregiver for carrying out all the caregiving tasks related to their caregiving role. caregiver preparedness has a strong link to caregivers feeling less anxious and burdened and could assist with overcoming the negative aspects of caregiving. musich et al. (2018) added that caregiver preparedness increases positive feelings such as hope and leads to better overall caregiver health. norinder, goliath and alvariza (2017) suggest that caregivers who feel they are prepared provide better care to their care recipients. a strategy that could be used to improve caregiver effectiveness is understanding and improving caregivers’ level of readiness to start rendering care to care recipients (marx et al. 2019). lutz, young, creasy, martz, eisenbrandt, brunny and cook (2016) list numerous factors that influence the readiness of caregivers to assume the caregiver role. these factors include the presentation of the care recipient, the characteristics of the caregiver, caregiver knowledge, skills and availability of resources to carry out their caregiving duties. caregivers have to be allocated the reagent resources if they are to render optimal caregiving services to children with disabilities (soni et al. 2020). in addition to caregiver skills, soni et al. (2020) found that a lack of resources posed a further challenge to the provision of optimum quality care to children who are differently abled. according to world health organization, international labour office & unesco (2005), governments are willing to accept and implement community based rehabilitation (cbr) programmes at the national level. this is challenging as many countries lack resources to implement and sustain cbr programmes. lack of resources therefore is a challenge on both the macro level and the micro level (ngos) as well. the micro level is the level in which ngos fall into. the high number of disempowered caregivers is affirmed in the framework and strategy for disability and rehabilitation services in south africa (national department of health 2015), which highlights the high number of ngos who have untrained caregivers looking after children with disabilities. the provision of education, resources and self-awareness is seen as an empowerment process, giving great power to its recipients (elphick 2017). the concept of empowerment is based on the impression that it is possible to help people to cope and feel better through discourse and reflection between the professional and the client in need as well as the caregiver. hage and lorensen (2005) argue that by implementing an empowerment strategy, caregivers are given the opportunity to expose their weaknesses and limitations that ultimately help them to effectively come up with a strategy to effectively care for themselves and others. numerous authors agree that programmes that help caregivers to change their behaviours in some positive way, helping caregivers to find resources within and outside the client and helping caregivers with the adjustment into the caring situation are all ways of helping caregivers reach the point of feeling empowered (elphick 2017; freid 2018; hage & lorensen 2005). caregivers who feel empowered therefore provide better care to children who are differently abled. statement of the research problem despite numerous research studies confirming the crucial role ngos for children with disabilities and caregivers of children with disabilities play in providing and offering support to various stakeholders of children with disabilities such as families, communities and society; caregivers’ individual needs are often overlooked, disregarded and misunderstood. in short, literature pertaining to the challenges caregivers experience strongly suggests that the majority of caregivers at ngos for children with disabilities do not feel empowered and therefore emphasises the need for caregiver empowerment. caregivers of children with disabilities often feel disempowered as they lack the skills and knowledge to provide optimal care to their care recipients (zuurmond et al. 2019). the challenges of caregivers at ngos for children with disabilities need to be investigated in order to guide caregivers in rendering optimal care to children with disabilities at ngos as well as guide relevant cbr stakeholders in providing ideal support to caregivers at ngos. purpose of the study the data presented here were part of a larger study titled ‘a programme to empower caregivers of children with disabilities at non-governmental organisations’ that aimed to develop a programme to empower caregivers who care for children with disabilities at ngos with skills and knowledge to effectively address the challenges they face in their caregiving role. the specific objective of this paper is to explore and describe the challenges of caregivers providing care to children with disabilities at ngos. research methodology this study made use of a qualitative research design that is exploratory, descriptive and contextual in nature. this approach was used as the researcher sought to explore, describe and understand the meanings that individuals or groups attribute to human and social phenomena (creswell & plano clark 2017). a detailed understanding of caregivers’ challenges was established by interviewing caregivers in the context where services are rendered. semistructured interviews are used when the researcher has a list of predetermined questions regarding the research objectives in order to obtain information-rich responses for participants. the interview schedule contained specific questions for caregivers that related to challenges caregivers experienced when rendering care to children with disabilities. possible probes were also included in each interview schedule. study setting this study was conducted at various selected ngos that provide care to children with disabilities in the townships of tshwane. tshwane is a metropolitan municipality in the northern side of gauteng province, south africa. according to the city of tshwane’s official website (last updated in 2015), there are over 200 health care ngos registered with the city of tshwane. of these registered health care ngos, approximately 30 ngos within townships cater for children with disabilities (city of tshwane 2015). children cared for by these ngos are children with moderate to severe disabilities such as cerebral palsy, severe intellectual disability, autism and spina bifida. interviews were conducted at caregivers’ natural settings. burns, grove and gray (2015) define a natural setting as a setting where the environment in which the study is being conducted is not manipulated by the researcher. caregivers were interviewed at the premises of the ngo where they are employed. study population the population comprised female caregivers aged 18 years and up, employed at ngos to render direct care to children with disabilities. all caregivers had been employed at the ngo for at least 6 months, as ngo managers stated that it took at least 6 months for caregivers to gain relevant experience. sampling technique the number of participants in qualitative studies is generally small; therefore, nonprobability, nonrandom sampling methods are used (kumar 2014). a purposive sampling technique was selected to ensure that only participants who have the required characteristics for the study were selected. the caregivers were selected from ngos who render direct care to children who are disabled, in order to purposefully inform an understanding of the phenomenon in the study and the problems that are central to the research. sample size it is not feasible to provide definite sample sizes; however, the number of participants in the study was determined by data saturation. saturation is described as the process the researcher uses to gather and analyse data up to the point where new insights are no longer observed (polit & beck 2017). the data saturation point was reached after interviewing 10 caregivers from four ngos, when the researcher stopped gathering new information from participants. data collection the researcher collected data through conducting semistructured interviews in english with caregivers from june 2020 to november 2020; an additional caregiver was interviewed in february 2022. interviews were audio recorded using an audio tape-recorder. the duration of interviews was between 45 and 90 min. the interview scheduled required pseudonyms, dates, respondent numbers and biographical information for each participant. finally, the interview schedule contained specific questions for caregivers related to the research objectives. questions were related to the daily experiences of caregivers when rendering care to children with disabilities. probes were also included in each interview schedule. data analysis data were analysed simultaneously with data collection. this simultaneous process of data collection and data analysis were done to enable the authors to develop an understanding about the phenomenon in question and aided the researcher in determining when data saturation was reached. data were analysed according to the six phases of thematic analysis proposed by braun and clarke (2006) (in jackson, mcdowall, mackenzie-savvy & whiting 2016), which are as follows: phase 1: familiarisation – this phase entailed the researcher carefully reading through the transcripts so that the researcher could gain a deeper understanding into the meaning of the transcripts. phase 2: coding – in this phase of data analysis, the researcher produced initial codes for the data collected. patterns were identified in the data by grouping data sets that were alike. phase 3: searching for themes – during this phase of data collection, the researcher generated themes by extracting, sorting and grouping relevant codes. phase 4: reviewing themes – this phase involved a deeper review of the identified themes. themes were checked in relation to the coded extract. phase 5: defining and naming themes – this step captured the core of what each theme consisted of. this phase enabled the researcher to clearly identify what the themes were and what they were not. phase 6: writing the report – the final phase of data analysis involved writing up the report by means of tables and figures in the form of word-for-word quotes that were used to support themes and subthemes. the researcher ensured the report was succinct, clear, rational and nonrepetitive and offered interesting accounts of the stories the data told. the authors made use of an inductive approach to analyse data. creswell and plano clark (2014) refer to inductive reasoning as a bottom-up approach where the researcher uses information gathered from participants to generate themes and then interconnect those themes to generate theory. the authors generated themes constructed from the objectives of the study as well as linked two or more concepts introduced by interviewees into one group, reasoning how they might go together as they were formulated through units of meaning. to facilitate the retrieval of what was said on each topic, data were coded, which were marked on a copy of the transcript from a word or phrase that represented what the researcher thought the given participant’s response meant. to generate themes with the supporting subthemes, 10 caregiver transcripts were analysed. trustworthiness trustworthiness was ensured through credibility, dependability, conformability and transferability. credibility was ensured through using an audio recorder to record the semistructured interviews. to ensure dependability, the research procedures and the process employed during the study have been documented in detail in order to enable future researchers to repeat the study. transferability related to the external validity of the research denotes to what extent the findings of the research can be generalised to other people, contexts, times and outcomes (yin 2016). although the findings of this project related to the context of where the research was conducted and not to all caregivers who provide care to children with disabilities at ngos, the authors ensured external validity by conducting the research in a real-life setting, the ngos where the care caregivers were employed. the study was thus conducted at the ngos where caregivers were employed. ethical considerations the authors conformed to the world medical association declaration of helsinki ethical principles for medical research involving human subjects (world medical association general assembly 2013). ethical clearance was obtained from the university of south africa’s health’s studies research ethics committee (hshdc/975/2020). non-governmental organisation managers granted the researcher written permission to conduct the study at their facilities. before interviews were conducted, the participants who had indicated that that they would like to participate in the study were given a consent form after receiving accurate and appropriate information concerning the research project and participation in the research project. participants were notified that participation in the research project was voluntary and that no negative consequences would be suffered as a result of refusing to participate in the research project. participants were also notified that they could withdraw from the study at any time they wished to. to ensure that the ethical principle of privacy was adhered to, the researcher conducted interviews on an individual basis with the door closed in a room allocated to the research at the ngo. privacy was also ensured by giving each participant a unique pseudonym instead of using their names. there was a potential foreseeable minimum risk of harm, which was minor and may have arisen when caregivers discussed the challenges they experienced when caring for children with disabilities at ngos. it was planned for participants who became distressed and required further psychological intervention to be referred to a clinic closest to them by the authors. caregivers were assured that they did not have to be anxious regarding their participation in the study. they were assured that anonymity would be guaranteed and that their participation or nonparticipation in the study would not affect their employment. audio tapes were identified by using codes and not names of participants. all transcripts and voice recordings were kept in a locked cabinet in the main author’s office. only the main author has access to the transcripts and voice recordings. all computer files containing records are password protected. the university of south africa’s policy on research ethics stipulates that data be retained for a minimum period of five years. data will therefore be retained for five years. thereafter documents will be shredded, and voice recordings will be deleted. findings demographic information about the caregivers is firstly presented in table 1, which is followed by a discussion of the challenges experienced by caregivers who care for children with disabilities at ngos. table 1: demographic information of caregivers. themes the authors generated six themes that represented the challenges and experiences of caregivers of children with disabilities at ngos, which were: (1) initial impressions, (2) rendering care, (3) stress, (4) lack of outside support, (5) coping and (6) poor community recognition. initial impressions caregivers reported their initial reaction to the caregiving context to be shock, sadness and fear. caregivers were not prepared for what to expect when they first entered the caregiving context: ‘i came here knowing nothing, but right now i am ok. i want to know everything on how to care for the disabled children … at first i was very stressed and felt very sad for these kids.’ (emma, female, 40 years) ‘i was so shocked the first time i started working here. i question myself as to what am i doing in this place. as time went on i realised their children are just like any other children. some can’t talk at all, some can’t talk properly and some only respond with their hands.’ (amy, female, 48 years) ‘i feel so bad the first time i came to this place. it was very tough for me to see children like this for the first time. i was scared.’ (bridget, female, 51 years) rendering care most caregivers expressed challenges relating to their main role, which was to render care to children with disabilities. these challenges included challenges related to bathing, dressing, feeding, positioning and stimulation of their care recipients: ‘aye … medication. the medication confuses me, but i want to try my best. i don’t do it and i want to do it, but it is very difficult.’ (bridget, female, 51) ‘there are children here who are wearing diapers. i always tell him that if he doesn’t tell me he wants to go to the bathroom, that i will beat him.’ (bridget, female, 51 years) ‘because these children are different. sometimes we don’t know how to treat them, we don’t know how to care for them and we don’t know how to help them.’ (charmian, female, 37 years) stress caregivers experienced stress, as they were not equipped with the relevant skills and knowledge to render care to their care recipients: ‘i sometimes stress a lot. these disabled children makes me very stressed. some of these children can beat you. when i’m stressed here my head pains.’ (isabel, female, 52) ‘i just experienced some parents are not satisfied. they like bad mouthing us caregivers. it’s the experience i have. i sometimes feel stressed and tired, but that stress i didn’t take at home.’ (farah, female, 48 years) ‘it is the parents that [cause] me stress. they often tell me i am lying about their child’s condition and that their child can do more than i say they can. they often make me cry. it is so painful when the parent say that.’ (hanna, female, 47 years) lack of outside support caregivers needed external support from governmental services and professional services to aid their experience and debrief, which was currently not provided to them. caregivers narrated that they received support from other caregivers at the ngo and ngo managers; however, they did not get any support from outside the ngo, which they reported to need: ‘no, i don’t get the support i need. for now, they don’t send me when i need support. i don’t know, maybe next time when i need help … yes. if i have challenges, it is the managers who support me.’ (farah, female, 48 years) ‘no support. we need someone who can counsel us. sometimes we get a lot of stress.’ (hanna, female, 47 years) coping caregivers experienced difficulty coping with all of the challenges they experienced. some caregivers made use of maladaptive coping strategies to the extent of taking pills and consuming alcohol in order to be able to sleep and cope with their stressors: ‘i would go and sit in the toilet and drink warm water. when i go home, i would drink alcohol.’ (bridget, female, 51) ‘i don’t cope; i just buy pills, disprin, and drink it. i get a lot of headaches. lots of headaches.’ (hanna, female, 47 years) poor community recognition caregivers did not believe the communities in which they worked recognised the valuable work they were doing at the ngos. one caregiver stated that people in the community had stigma towards children who were disabled. caregivers also reported that people in the community did not know and did not understand what they did at the ngo. community members also did not understand why caregivers preferred to care for children who were disabled: ‘no, they didn’t know what we do here. some of them ask me what kind of a crèche is it where you work, and i tell them. others talk about the money and say i do this job only for the money. they not interested in the job i do, they only interested in how much money i earn.’ (farah, female, 48) discussion any person providing acts of nurturing or attending to someone who is in need of such services can be referred to as a caregiver. the act of caregiving echoes the uniqueness of the caregiving role that entails providing emotional support, support with health and medical care, support with basic activities that need to be performed on a daily basis and referrals to relevant medical team members when the need arises (schulz & edin 2016). caregivers could be formal or informal. what distinguishes the two categories of caregivers are the skills and knowledge of the caregiver and remuneration for caregiving services they receive. formal caregivers are considered to be equipped with the required skills and knowledge to render care to care recipients (musich et al. 2018). this study identified challenges experienced by caregivers at ngos caring for children with disabilities. a majority of caregivers in the study reported their essential caregiving role to be that of providing basic care to children with disabilities. basic caregiver roles revealed in the study concurs with schulz and edin (2016), who regarded the caregiving role as being diverse. caregivers take on miscellaneous tasks, which makes their role encompass numerous activities. similar to findings from the current study, coetzee (2016) mentions caregiving tasks to include bathing, dressing, feeding, diaper changing, medication management and stimulation of care recipients. providing care to children with severe disabilities is a complex task because of the nature of disabilities these children present with. most caregivers in the study mentioned numerous challenges related to their specific caregiving role, which could be a result of inadequate training they receive. bosch (2015) found that most caregivers in rural areas start rendering care to care recipients without having undergone any training. a study by burgdorf et al. (2019) found that 93% of caregivers providing care to care recipients have never received training to carry out their caregiving role. elkins and rustin (2019) conducted a study on caregiver training needs at two different caregiver conferences and found that most caregivers required more training on health issues and use of resources. training in areas such as diaper changing, potty training, bathing and transferring was also expressed as a need. furthermore, the study by elkins and rustin (2019) revealed that caregivers also needed training on the conditions that care recipients present with and how to interact with care recipients. caregivers also expressed the need for training on how to improve physical interactions with their care recipients and how to exercise patience, compassion and kindness. bosch (2015) highlights the importance of providing training to improve the skills and knowledge of caregivers. caregiver training enhances the quality of life of caregivers and improves the quality of care that care recipients receive. caregiver training also improves the problem-solving skills of caregivers and decreases the negative effects of caregiving. because of the lack of resources and availability of rehabilitation specialists, many children with disabilities do not receive the appropriate care they need. the department of social welfare of the ministry of gender, children and social protection and unicef ghana (2020) developed a training manual for children with disabilities that outlines the basic training that caregivers of children with disabilities require. included in this basic training are child growth and development, types of disabilities, children’s rights, categories of caregivers, basic needs of children, quality of care of children with disabilities and self-care for caregivers of children with disabilities. from what was revealed in this study, it is evident that the caregiver role is one that carries with it a high level of responsibility. zarit (2004) argues that those who are in need of caregiving services and do not receive them have lower life expectancies. numerous authors concur that without the services of caregivers, the burden on the health care system would be higher as more individuals would require hospitalisation or placement in rehabilitation and care facilities (kutner & kilbourn 2009; northouse, katapodi, schafenacker & weiss 2012; porter, keefe, garst, mcbride & baucom 2008). all caregivers reported that their caregiving role entails providing basic care to children with disabilities at the ngo where they are employed. the basic care caregivers provide to the children include: (1) bathing, (2) feeding, (3) nappy changing, (4) stimulation, (5) potty training and (6) giving medication. regarding medication, one caregiver expressed her intense fear of giving children their medication; however, she did have a desire to learn more about medication so that giving children their medication could also be added to her caregiving role. taking children for clinic visits was a role stated by two participants in the study, as parents were unable to take children to the clinic during the clinic operating hours. one caregiver reported performing general caregiving roles for the children as well as basic roles that were usually performed by support staff and cleaners. these general roles included cooking for the children and cleaning of the ngo premises. performing general and specific roles made it very difficult to manage her time. caregivers caring for children with intellectual disabilities reported an additional role, which was the role of teaching children basic concepts. caregivers were responsible for the emotional and physical support for those individuals who were unable to take care of themselves because of physical, emotional and cognitive impairments (geiger 2012). schulz and edin (2016) report that the caregiver roles vary and change over time based on the changing needs of the care recipients. a frequently performed role of caregivers is that of managing a care recipient’s medication. often, caregivers do not possess the skills and knowledge of medication management prepared to manage intricate medication schedules of those they render care to (look & stone 2018). more than half of the caregivers in the study have the role of medication management. look and stone (2018) contend, ‘medication management is complex and involves many physical and cognitive activities for caregivers’. despite the numerous challenges caregivers experienced with medication management, they still did express the desire to learn so that they could optimally fulfil this role, as depicted in the excerpt above. according to ogle, cooke and brandt (2014), caregivers may also benefit from being involved in programs aimed at educating them about the medication regimes of the children they render care to. tools such as notes, calendars, reminders and checklists could be used to enhance the effectiveness of caregiver medication management, as these will assist them to keep track of the various medications and the times when medications need to be administered (ogle et al. 2014). children arrive at the ngo early in the morning and leave late in the afternoon. caregivers therefore have an added responsibility of having to take their care recipients to the local clinic for their medical care. a study conducted in south africa by mafune, lebese and nemathaga (2017) reports an additional role of the caregiver, where the caregiver has to often take their care recipients to the clinic for their general check-ups and medications. their study also found that nurses at the clinic were furious with caregivers who were not compliant with the care recipients’ medication regimes. these are in line with the findings of this study. caregivers in the current study described their first impressions and initial reactions as shock or feeling intensely overwhelmed, as they were not expecting to see children who were severely disabled. most caregivers reported never receiving any training before assuming their caregiving roles. some caregivers reported that they were sent on training only after starting their jobs or received ‘on the spot’ training from other caregivers or given instruction by ngo managers on what to do. similar to the current study, mapira, kelly and geffen (2019) found that most community workers had to assume duties without having undergone the necessary training. the results of the current study are also consistent with a study by burgdorf et al. (2019:835), published in the jama internal medicine journal, which revealed that more than three-quarters of caregivers are actively performing their caregiving roles without having undergone any training. a positive first impression is one of the factors that determine caregiver preparedness (alvariza, häger-tibell & holmet 2020). caregiver preparedness is described as the perceived readiness of caregivers to undertake the caregiving role that includes the provision of physical and emotional support to those in need (schumacher et al. 2008). ferrell and mazanec (2009) suggest that there exists a strong relationship between caregivers’ preparedness and caregiver burden. caregivers are responsible for creating favourable environments that facilitate the process of assisting these children with disabilities to whom they render care. caregivers, however, face many challenging conditions, which makes it difficult for them to optimally fulfil their caregiver role. most caregivers mention numerous challenges related to their specific caregiving role. caregivers find it difficult to handle some children, especially those who display problematic behaviours. two caregivers stated that they beat children who do not behave accordingly. giving children medication is another challenge some caregivers reported experiencing, as the dosage of medications and the times given must be precise. caregivers render care to children with various disabilities who each have their own specific needs, which makes it difficult for caregivers to know how to help children with these different disabilities. there are varieties of factors that pose challenges to caregivers who care for children with disabilities. amongst these factors are the physical condition of the caregiver, level of knowledge of the caregiver, nature of the child’s disability, age of the caregiver and financial cost of caregiving (ndadzungira 2016). the caregiver role is physically and emotionally demanding for caregivers, which often results in them experiencing high levels of stress. caregivers take on great responsibilities when they care for children who are disabled. children with disabilities are not easy to care for, as they require intricate care to perform activities of daily living, even the most basic activities such as bathing and dressing. caregivers thus experience many stressors but are not able to cope with the negative effects of the caregiving role. because of the requirements of their work, caregivers who care for children with disabilities experience many stressors resulting in the deterioration of caregivers’ physical and psychological well-being. findings from the study are consistent with literature that identifies anxiety, depression and insomnia as psychological effects of stress (cora et al. 2012). stress could also have physical manifestations such as body aches and pains. research shows that caregivers who are unable to cope with the stress they experience have a lower life expectancy than caregivers who can manage their stress in a healthy manner (braun et al. 2007). programmes and interventions aimed at helping caregivers should focus on teaching caregivers skills to deal with the problems the care recipients present with. equipping caregivers with skills and knowledge to optimally perform their caregiving role could help in drastically reducing the stress caregivers experience. findings of this study revealed that some participants self-medicate using over-the-counter painkillers whilst others drink alcohol to help them cope with the stress of their caregiving job. the findings of this study concur with previous research. a study by rahmani et al. (2019) found that majority of male caregivers used coping strategies that were problem-focused as opposed to the majority of female caregivers, who made use of maladaptive coping strategies. this finding of the study by rahmani et al. (2019) is in line with the findings from the current study where all caregivers were female caregivers who made use of maladaptive coping strategies. caregivers reported maladaptive coping strategies to deal with stress that occurred because of their caregiving role. prior studies have identified stress as a negative impact of caregiving (theofilou 2012). there is a crucial need for all stakeholders involved with ngos for children with disabilities to address the adverse effects caregivers experience. the study revealed that caregivers are receiving inadequate support from outside. caregivers narrated that they received support from other caregivers at the ngo and ngo managers; however, they did not get any support from outside the ngo, which they reported needing. hanna highlighted that the outside support she required was counselling, as her job was stressful. other caregivers, governmental services and professional services could offer support, as those who come into contact with the caregiver are in a position to provide support. support caregivers could receive is reliant on individual caregivers’ personal experiences and circumstances. muller-kluitsi and slabberti (2020) support this notion and mention that it is vital to make use of a bottom-up approach when planning on how best to support caregivers, where the challenges and needs of caregivers are understood from the caregiver’s perspective. according to the alzheimer’s society of york (2018), caregivers who receive the necessary support have their risks of deteriorating heath or distress reduced: ‘[r]egardless of the type of barrier to role recognition, when the caregiver role is not identified, it can be challenging for the caregiver to become informed and empowered to meet his/her own needs or become a partner in the care process.’ (the alzheimer’s society of york 2018) the alzheimer’s society of york (2018) further iterates that not recognising the caregivers’ role could set off a negative chain of events that lead to potentially high physical and emotional health risks for the caregiver. the vital role caregivers play is one that should not go unrecognised. most caregivers in the study feel they do not receive adequate recognition from their communities. schneider (2020) states caregivers who are not recognised by their community are often demoralised and experience higher levels of stress than caregivers who receive community support and recognition. this could explain the high level of stress and poor coping strategies caregivers in the current study experience. caregivers are crucial members of the team involved with children with disabilities as they contribute significantly to the south african health care system, particularly the primary level of health care. conclusion exploring and describing the challenges of caregivers providing care to children with disabilities at ngos revealed numerous challenges experienced by caregivers, such as initial impressions, rendering care, stress, lack of outside support, coping and poor community recognition. caregivers require comprehensive programmes that will empower them to render effective care to children who are disabled. it is of utmost importance that caregivers have knowledge, skills, training opportunities, recognition and support to render optimal care for children with disabilities (the alzheimer’s society of york 2018). if caregivers of children with disabilities are empowered to effectively address the challenges they face, the care they provide to their recipients will improve and then children’s physical, emotional, social and functional well-being will be enhanced. empowering caregivers will be of benefit to children who are disabled as well as the caregivers. the physical and psychological distress caregivers experience as a direct result of their caregiving duties is drastically reduced when caregivers receive adequate support (the alzheimer’s society of york 2018). recommendations caregivers should be empowered and supported to be confident in their capabilities and believe that their work is positive and beneficial so that they are able to deal with the challenges they face, which will ultimately lead to caregivers providing better care to children with disabilities and caregivers experiencing a better quality of life. newly appointed caregivers should be provided with training before assuming their caregiving duties. non-governmental organisations should expose their caregivers to various training programmes on a regular basis. empowering caregivers will also provide affirmation and validation of the roles caregivers play as well as provide a strong sense of self-efficacy for caregivers, which is paramount to caregivers feeling empowered. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contribution the primary author, s.m-t., has made the most significant intellectual contribution to the work, in terms of designing the study, acquiring and analysing data and writing the manuscript, as it was part of her phd thesis. the contributing author, p.r.r., was the phd research supervisor. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the authors were unable to find a valid data repository for the data used in this study. the data are available from the corresponding author; s.m-t. 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science, university of kwazulu-natal, durban, south africa nomfundo mthethwa gender and health research unit, south african medical research council (samrc), durban, south africa malebogo molefhe private, gaborone, botswana tshiamo keakabetse institute for development and management, gaborone, botswana citation hanass-hancock, j., mthethwa, n., molefhe, m. & keakabetse, t., 2020, ‘preparedness of civil society in botswana to advance disability inclusion in programmes addressing gender-based and other forms of violence against women and girls with disabilities’, african journal of disability 9(0), a664. https://doi.org/10.4102/ajod.v9i0.664 original research preparedness of civil society in botswana to advance disability inclusion in programmes addressing gender-based and other forms of violence against women and girls with disabilities jill hanass-hancock, nomfundo mthethwa, malebogo molefhe, tshiamo keakabetse received: 17 july 2019; accepted: 06 apr. 2020; published: 28 july 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in low-income and middle-income countries women and girls with disabilities are more likely to experience violence than those without disabilities. non-governmental organisations (ngos) and disabled people’s organisations (dpos) can help to address this. however, in countries like botswana we know little about the preparedness of ngos and dpos to increase inclusion in and access to programmes addressing violence. objectives: to explore the capacity and preparedness of ngos and dpos to ensure that women and girls with disabilities can participate in and access programmes addressing violence. methods: a qualitative study was undertaken using interviews with 17 ngos and dpos in botswana to understand the organisations’ level of and ability to deliver programmes addressing violence against women and girls. results: both ngos and dpos lack elements of universal design and reasonable accommodation, and thus are inaccessible to some people with disabilities. some programmes address violence against women but lack skills and resources to accommodate people with disabilities. in contrast, dpos work with people with disabilities, but lack focus on violence against women with disabilities. participants identified opportunities to fill these gaps, including adaptation of policies and structural changes, training, approaches to mainstream disability across programmes, development of disability-specific interventions and improved networking. conclusions: botswana’s ngos and dpos are well positioned to address violence against women and girls with disabilities, but need to increase their accessibility, staff knowledge and skills and disability inclusion. training, resource allocation and participation of women with disabilities in ngos and dpos is needed to drive this change. keywords: gender-based violence (gbv); violence; hiv; botswana; participation. introduction violence against women is a serious violation of women’s rights and a public health concern (world health organization 2013). globally, violence against women and girls is also an issue of scale: 35% of women have reported experiencing sexual or physical violence from a partner or non-partner worldwide (world health organization 2013). women and girls with disabilities are even more vulnerable to all forms of violence, including physical, emotional, economic, structural and sexual violence, compared to men and women without disabilities (dunkle et al. 2018; hughes et al. 2012; jones et al. 2012; unwomen 2013). literature shows that this vulnerability is fuelled by double discrimination based on disability and its intersection with negative gendered norms and attitudes (kvam 2004, 2005; kvam & braathen 2006, 2008; unwomen 2013). in societies where gender inequality and violence against women are endemic, women and girls with disabilities are therefore even more likely to experience violence (unwomen 2013; usaid botswana 2014). internationally data on prevalence of violence against women and girls with disabilities are sparse for middle-income and low-income countries (hughes et al. 2012; jones et al. 2012). recently, the ‘what works’ programme has released data on intimate-partner violence (ipv) revealing that women with disabilities are two to four times more likely to experience ipv than their peers without disabilities (dunkle et al. 2018). within the eastern and southern african region a body of research is also emerging showing that women and girls with disabilities are not only more vulnerable to all forms of violence (including intimate-partner and gender-based violence), but that they are also more likely to experience confounding risk factors of violence such as multidimensional poverty (banda 2005; eide 2003; eide & kamaleri 2009; eide, khupe & mannan 2014; eide & loeb 2006; hanass-hancock 2015; mitra, posarac & vick 2013; south african department of social development 2016), inequality and discrimination based on gender and disability (charowa 2005; dunkle et al. 2018; kvam & braathen 2008; zimbabwe parents of handicapped children association, unknown), poor access to services including sexual and reproductive health rights (srhr) and sexuality education programmes (unaids 2014; unfpa 2018a, 2018c), and increased likelihood of violence in childhood (kvam & braathen 2006; save the children 2011). botswana is a middle-income country with high levels of violence against women and girls. the 2018 relationship study indicates that 37% of women in botswana have experienced some form of violence in their lifetime, including both partner and non-partner violence (botswana ministry of nationality immigration and gender affairs 2018). the same study reveals that 30% of women experienced violence in the last year. the most commonly reported form of violence was emotional ipv, followed by physical, sexual and economic ipv. child sexual abuse is also reported as a significant risk factor for exposure to violence in adulthood. both the 2012 gender-based violence (gbv) indicator report and the 2018 relationship study reveal that exposure to violence leads to physical injuries, sexual and reproductive health issues (sexually transmitted infections, hiv) and poor mental health among women (botswana ministry of nationality immigration and gender affairs 2018; machisa & van dorp 2012). hence, the level of violence against women and girls is alarmingly high in botswana and this has a wide-ranging impact on individuals, families, communities and the country as a whole (bloom & curran 2015; usaid botswana 2014). the country is therefore specifically focusing on prevention of violence (botswana ministry of national immigration and gender affairs 2016; hanass-hancock et al. 2018b). information on violence against women and girls with disabilities is sparse in botswana. for instance, the country’s 2012 gbv indicator study (machisa & van dorp 2012) did not include information on people with disabilities. the 2018 relationship study (new gbv indicator survey) included for the first time a disability indicator revealing that people with disabilities experience high levels of partner and non-partner violence. the study also shows that women with disabilities are more likely to experience violence than men with disabilities (botswana ministry of nationality immigration and gender affairs 2018). apart from this information we have very little understanding of the levels and types of violence women with disabilities experience in the country, what risk factors increase their vulnerability and what interventions can reduce these risks. the first data describing the risk factors of violence against women and girls with disabilities became available through the alight botswana project. the associated qualitative study revealed that women with disabilities experience all forms of violence, but that emotional and sexual violence are of particular concern (hanass-hancock et al. 2018a). the study also showed that the context perpetuating violence against this group is shaped by: harmful individual attitudes and lack of knowledge on the part of survivors, perpetrators and service providers, negative sociocultural norms related to disability and gender, disability-related barriers in the environment, lack of access to resources and a lack of disability inclusion in the country’s srhr and gbv policies and strategic plans. in addition, the project’s inception phase suggested that inclusion of women and girls with disabilities was absent from most non-governmental organisations (ngos) working in the context of violence (including those focusing on gbv, srhr and hiv), while disabled people’s organisations (dpos) lacked focus on violence against women and girls with disabilities (hanass-hancock et al. 2018b). nevertheless, ngos and dpos are often believed to fill service gaps, sensitise communities and reach out to marginalised populations in low-income and middle-income countries (dunkle et al. 2018). for instance, ngos have contributed significantly to the increase in service delivery and outreach of strategic programmes, such as those for hiv and aids in africa (handicap international 2014). similarly, dpos are seen as important partners for disability rights programming, while disability service organisations have been a cornerstone to reach people with disabilities in resource-poor settings (e.g. humanity and inclusion, christopher blind mission, sight savers, leonard cheshire etc.) (handicap international 2013, 2014; unaids 2017). international programmes focusing on violence in low-income and middle-income countries such as the ‘what works’ and the ‘make it work’ programmes recommend partnering with dpos (dunkle et al. 2018; handicap international 2013). these programmes claim that dpo and ngo involvement is an ‘effective strategy’ to ensure inclusion of women and girls with disabilities in mainstream violence prevention programmes (dunkle et al. 2018). currently we have little evidence of the capacity or preparedness of ngos and dpos in resource-poor settings to ensure that women and girls with disabilities can access and benefit from programmes that are designed to prevent violence against women or girls in general (hanass-hancock et al. 2018b; unfpa 2018a). this article is part of the alight botswana project, which focuses on increasing participation of women and girls with disabilities in programmes that address violence, srhr or hiv in botswana. the sub-study presented here focuses on the capacity and preparedness of ngos and dpos to ensure that women and girls with disabilities can participate in and access programmes addressing violence. it also identifies the gaps and opportunities for these ngos and dpos to drive inclusion of women and girls with disabilities in programmes addressing violence. methods the presented sub-study is imbedded in the larger alight botswana study, which has four key objectives: focusing on identifying risk factors of violence against women and girls with disabilities, describing the experience of violence among women with disabilities, identifying the gaps and opportunities for ngos and dpos to increase access and participation and appraising the inclusiveness of srhr, hiv and gbv policies and programmes (samrc, idm & bcd 2017). all four sub-studies informed the training and capacity building of ngos and dpos as well as the parallel efforts to develop a disability policy and strategy in botswana. study design the alight study used a participatory action learning and action research approach (palar) (kearney & zuber-skerritt 2012; wood & zuber-skerritt 2013; zuber-skerritt 2015). the palar approach integrates the concept of action learning with action research. it also integrates participatory elements and aims at positive social change for a just and better world for all human beings. the researchers in this study made specific efforts to ensure (1) participation and leadership of women and girls with disabilities, (2) participatory engagement of researchers with the target group and (3) mutual learning and actions towards greater inclusion of women and girls with disabilities in existing programmes. this meant that the study team (researchers, fieldworkers, transcribers, facilitators) included women with disabilities, enabled leadership of women with disabilities and translated research results into actions in the partnering dpos and ngos (in the form of training and strategy development). sampling the botswana council for the disabled (bcd) functioned as a project partner and gatekeeper for the fieldwork. the bcd is an umbrella body for all dpos in botswana and has collaborative links to ngos working in the fields of gbv, hiv and srhr. through this network and a collaborative inception phase the alight project officer identified and recruited potential participants for key informant interviews (kii). participants for the sub-study with ngos and dpos had to be senior managers or directors of the respective organisations in three purposely selected areas (areas that had head offices of the major dpos and ngos working in the country). research tools we conducted 17 kiis with ngos and dpos in gaborone, maun and francistown (figure 1). these kiis were guided by a qualitative question guide and a disability inclusion audit in the form of a self-designed checklist. both tools were developed using the convention on the rights of persons with disabilities (crpd) and the action linking initiatives on violence against women and hiv everywhere (aliv[h]e) framework as guiding frameworks to understand the organisations’ context, level of disability inclusion and ability to deliver programmes addressing violence against women and girls including those with disabilities (salamanda trust et al. 2017). figure 1: sampling framework for the key informant interviews. the interview guide prompted information related to the organisational profile, the organisations’ services and activities, the level of inclusion of people with disabilities, perceptions of gaps, opportunities and potential strategic actions to increase inclusion and participation. the checklist prompted the participants’ perceptions in six domains important for disability inclusion and accessibility of ngos and dpos: level of disability accessibility through universal design and reasonable accommodation, disability-related sensitisation and training of staff, the ability to screen and identify disability, the ability to provide or refer to disability services, linkages to poverty alleviation programmes focusing on people with disabilities and linkages to civil society, including those focusing on violence. all six domains were prompted through several questions, scored and then reported as frequencies for the group of ngos and dpos separately (see table 2 and table 3). the checklist cannot be seen as a comprehensive tool but is rather a first snapshot prompting some basic elements that need to be considered when trying to include people, particularly women and girls with disabilities, in programmes addressing violence. hence the checklist was used as a guiding tool to systematically collect data and has been inspired by similar checklists used to assess inclusion in healthcare services providing services on hiv, srhr and violence (hanass-hancock & alli 2015). a separate article will focus on this tool. the data from the kiis were transcribed, translated and analysed using guided content analysis. a team of three researchers developed a case study report for each of the 17 ngos and dpos. these case studies included descriptions of four main themes: the organisational profile, including levels of disability inclusion (universal design, reasonable accommodation, disability identification and referral), the organisational capacity to address violence against women, including those with disabilities, perceptions of internal and external opportunities to improve participation and inclusion and perceptions of important roles and involvement of key stakeholders. thereafter we compared and synthesised the 17 case studies for emerging similarities and differences across all organisations. these in-depth descriptions were discussed by the research team, paying specific attention to variations across all three selected geographical areas, between ngos and dpos and across different disability types. ethical considerations information about the study was provided in writing and discussed with the participants verbally before the interviews. the information provided explained the purpose of the study, procedures, potential risks and benefits, contact information and voluntary nature of the interviews. prior to the interview an informed consent form was signed. the study was approved by the south african medical research council (samrc ec019-10/2017) and the botswana ministry of health and wellness (dpdme 13/18/1) and endorsed by the botswana office of the president. results representatives from eight ngos and nine dpos participated in the kiis (see table 1). the ngos’ work focused on gbv, violence against women and girls, roles of men and boys, legal services or implementation of hiv programmes. their core activities included advocacy, community engagement and service delivery, meaning they were working on addressing gender inequality, negative attitudes and discrimination. all of the ngos had central offices with some of them supporting branches in several provinces. table 1: sampling for key informant interviews. the dpos included organisations self-representing people with disabilities as well as disability service organisations. with the exception of three organisations, the dpos focused on one particular disability type only (e.g. people with hearing, visual, intellectual or physical impairments). all dpos had only one headquarters office and some were operating from homes as they were situated at grassroots level with few resources. the dpos focused mainly on advocacy and networking. some also provided support groups or specialised services (e.g. sign language interpretation, braille, rehabilitation services) or else they had focused programmes (e.g. accessibility to sport activities or income-generating activities). one disability service organisation had previously conducted a project focusing on violence and two dpos had been involved in hiv projects. only three organisations had people with disabilities in leadership positions, although none was a woman with a disability (table 1). while dpos employed people with disabilities, none of the ngos employed people with disabilities. the results from the kiis relate to four main themes: the organisational profile and level of disability inclusion, the organisational capacity to address violence against women and girls with disabilities, perceptions of internal and external opportunities to improve participation/inclusion and perceptions of roles and involvement of key stakeholder. the organisational profile and level of disability inclusion the managers and directors of the participating organisations provided information related to the level of inclusion in the organisations’ policies and strategic plans, the accessibility of activities and facilities, the training and capacity of staff and the linkages to other ngos and dpos, disability services, violence and poverty alleviation programmes. participants from both ngos and dpos held the notion that their organisation’s policies and strategic approaches included people with disabilities (table 2). in the interviews ngo representatives shared that ‘their services are for all people’, with some believing that this general statement is enough to include people with disabilities on a policy and programme level. in addition, two ngo participants shared that they believed that they ‘shouldn’t know the disability of people’ and should treat all people equally. ‘we have a core belief [that] one shouldn’t know the disabilities of people, some might have a learning disability, some might have physical disability that can be seen, but we offer our services to the public for women and men.’ (manager of ngo working with men and boys) table 2: self-reported assessment using disability inclusion checklist. criticising this practice of ‘inclusion via default’, one ngo representative emphasised the importance of prioritising disability in the strategies and policies of ngos. the participant highlighted that without prioritisation resources were difficult to allocate to disability needs. the participant also explained that awareness around disability was only emerging and that therefore ngo strategies and programmes did not yet include or prioritise disability. the lack of inclusion and prioritisation in the strategies and policies of ngos and funding agencies leads to lack of resources and skills that are needed to accommodate people with disabilities in the work of ngos. ‘disability is an emerging issue … and we need someone who has those skills as part of our team … however because it [disability] is not a strategic area we can’t give it priority. [as a consequence] even when we are talking with regards to resources we … need to demonstrate that there are women with disabilities out there who require our services.’ (manager of ngo focusing on violence against women) the dpo representatives believed their policies or strategic plans were disability inclusive because they were a dpo and informed about disability issues by their constituency. the dpos usually catered for the disability type they focused on, and employed people with disabilities (while ngos did not employ people with disabilities). however, none of the dpos was familiar with the concepts of universal design and reasonable accommodation and spoke more generally about accessibility and inclusion. ‘our services … are open to any person with visual impairment regardless if she or he is our member or not as long as he or she is visually impaired. … the challenge is access, how to reach them because most of them live in villages while we are limited by resources to go to the villages. access to information, they [people with disabilities] don’t have access to information.’ (representative of dpo for people with visual impairments) when prompted with the disability inclusion checklist, 15 out of the 17 organisations lacked basic measures of universal design or reasonable accommodation or both (table 2). for instance, none of the ngos and only two of the dpos included ramps to their buildings. only one ngo and two dpos had wheelchair accessible toilets and only one organisation included signs in braille. similarly, very few organisations provided sign language, braille or simplified information (table 2). some of the ngos specifically criticised this in their interviews. ‘they [the ngo’s facilities] do not accommodate, it does not even allow them [people with disabilities] to come forth and access services especially those ones using the wheelchair.’ (manager of ngo focusing on hiv prevention) the dpos tended to provide accommodation for the disability type they focused on, while only very few ngos included some measures of universal design or reasonable accommodation. only two disability service organisations provided a more comprehensive set of universal design and reasonable accommodation measures across disability types. as a result, dpos and ngos were mostly inaccessible. the researchers, who included women with disabilities, therefore found it very difficult to conduct the fieldwork in some settings and alternative arrangements had to be made. furthermore, the kiis and disability inclusion checklist revealed that both ngos and dpos had undergone staff training, with ngos having more training on violence and hiv-focused organisations and dpos more training related to disability. most organisations lacked training on the intersection of disability and violence. all ngos and dpos indicated that they had established referral links with other organisations or services, hence referrals between dpos, disability services and ngos focusing on violence and hiv was possible. however, in most organisations staff were not trained to identify disability or use screening tools, hence less visible disabilities are more likely to be overlooked. in addition, all representatives believed that their organisation was well connected to other civil society organisations. generally, ngos provided better links to income-generating opportunities or poverty alleviation programmes than dpos. however, very few dpos or ngos made specific efforts to provide access to economic resources for women with disabilities. organisational capacity to address violence against women and girls with disabilities the ngos and dpos had very different profiles in terms of their ability to deliver services to women with disabilities and increase their participation in programmes addressing violence or related issues (e.g. hiv or srhr). most ngos had established programmes focusing on gbv, hiv or srhr, but lacked inclusion of people with disabilities, while dpos were better established to reach and support people with disabilities, but lacked resources to provide services related to gbv, hiv and srhr. participants from ngos revealed that they had several offices and outreach activities in the country and were therefore able to reach women across districts. ‘we are in about sixteen districts countrywide and this is an opportunity to enhance the participation of women with disabilities. … we can mobilise the communities and ensure that they know stigmatising people with disabilities is not a good thing.’ (manager of ngo focusing on hiv prevention) the ngo representatives also explained that they provided a number of services including provision of information on gbv or hiv, counselling, testing and community engagement and sensitisation. they reached out to communities and services (e.g. schools, police and clinics) and engaged with traditional authorities and government. ‘the organisation deals with gbv primarily by giving information especially to girls and women and we recently had a project … where we were giving children in school and in the community messages on gender-based violence.’ (manager of ngo focusing on violence against women) however, representatives from ngos highlighted that their facilities were physically inaccessible and that their staff lacked skills and competence to accommodate people with disabilities. hence they emphasised that they needed training and better linkage to disability service providers. ‘you need people who have the competence to work with people with different disabilities, for example … the feedback that we get from the deaf and the blind is that we have counsellors who are not trained and expect them to give them services, how are they (the councillors) going to be working if they have not been trained. … we need to look into that.’ (manager of ngo focusing on hiv prevention) one ngo member of an aids service organisation identified the lack of skills and disability accommodation as the ‘weakness’ of ngos’ programming, and linked it to ‘generalising people living with hiv’ while failing to address the diversity and different needs of their clients. this participant revealed that ignorance about disability leads to ngo services ‘being discriminative of people with disabilities’. ‘we do not have special services for people with disabilities and this is one of our weaknesses when it comes to programming. we generalise all people living with hiv; no emphasis on people with disabilities. … so you will find that our services are discriminative of them. … when there is a hearing impaired individual who has come for health services, there is no provision of sign language meaning that he or she is not catered for. but we assume that we are providing services to people infected and affected [by hiv]. it’s high time we mainstream disability issues in our programmes.’ (manager of aids service organisation) capacity building was seen as key to improving service delivery for people with disabilities. the respondents identified the need for specialised services to enhance communication such as sign language interpretation or braille but not the need to understand disability rights or services for other disability types such as intellectual disabilities. hence, respondents were more aware of the communication needs of specific disability groups. ‘capacity building. let there be education and training. let’s have people in services who can provide sign language where people with disabilities are free to access service without wondering who is going to help them. … i think education and training; if capacity building component includes issues like sign language and braille, we would be doing much better.’ (manager of ngo focusing on hiv prevention) the ngo representatives also highlighted the need to better integrate violence interventions and hiv services, a trend that is currently also supported by the integrated sexual and reproductive health strategy of botswana (department of hiv prevention and care 2016). integration was seen as important as the two topics were understood to overlap: people living with hiv may also have experienced violence (and vice versa), hence counsellors dealing with hiv had clients who also experienced violence and discrimination. ‘integration. we have hiv testing projects but i know the issues of gender-based violence have not been included, but i feel that our counsellors could be given some training in gender-based violence cause they also deal with communities … given their exposure to issues of gender based violence, integration is very important in our days.’ (manager of ngo focusing on hiv) participants from dpos revealed that their organisations provided a network, support groups, opportunities for advocacy of specialised services (sign language, braille) to their constituency. with the exception of one organisation, all dpos had only one office, hence their reach was very local and restricted to the limited funding they had. as a result dpos may be able to provide or refer to specialised services but have only localised reach to people with disabilities. representatives from dpos also revealed that support and information in terms of violence and hiv was not provided by them through formal programmes but more informally through responding to emerging discussions, cases or request for legal support. ‘when they [people with disabilities] are … exposed to violence … our association … told them not to keep quiet, if they were not able to shout … immediately after the incident they should report.’ (manager of dpo for people with intellectual disabilities) two dpo representatives revealed that their organisations had started to work in the context of violence and disability. for instance, one participant explained that their organisation ‘bridges the communication gap’ for deaf people by providing sign language interpretation and linking deaf people to suitable legal aid. the narrative below describes how dpos can assist in the process of gaining access to justice and services: wherever there’s a problem identified, the officers [the dpo staff] will help the family or the woman or young girl to get help on any issue that they may have encountered. for example, we had one young deaf lady … who was sexually abused by another deaf individual, the officers helped the young girl to report the case to the police and also helped the young girl to get a fair hearing through enabling communication between the police and the victim … to ensure that women and deaf girls have fair representation. … we bridge the communication gap for them and enable access to services such as the police. if it is a legal issue we help to contact possible service providers, like legal aid botswana, department of law, botswana independent law society, where they can get free assistance in terms of representation when they need to go to the court. (manager of dpo for the deaf) a second participant revealed that their disability service organisation had one project that focused on disability rights which included discussions around violence and people with disabilities. in their engagement with the community on this topic the dpo identified barriers to accessing services as well as knowledge gaps about rights among people with disabilities. ‘we were doing a project in …, where we were focusing on girls and women with disabilities. we were looking at their rights and if they know their rights. we were also teaching them different types of rights, how they can access services and where they can report violence. in our fieldwork we realised that some people don’t know that certain violations are violence.’ (manager of disability service organisation) the dpo representatives also identified a number of challenges to reach out to people with disabilities. this included the dpos’ lack of human and financial resources, capacity and their limited geographical reach. ‘the challenge is that we are a small grass roots dpo, we don’t have funds to travel, and we need resources to travel or maybe if we have identified someone’s needs, and we need to help, we are unable to help but we are able to advocate, we go to the relevant personnel to assist though it takes time due to financial resources.’ (manager of dpo for physical and sensory disabilities) lack of resources was seen as linked not only to the limited outreach to people with disabilities but also to a lack of systematic work to identify and prevent violence and abuse. one dpo representative explained that their limited reach resulted in them only being able to respond to reported cases and not through outreach activities of the dpo. ‘the most hindrance from achieving our mandate is that of lack of resources, if we had sufficient resources we could engage more on the 16 days of activism activities to sensitize the nation about gbv. … unfortunately as an association we only act on what has been reported to us about disabled people. we have not directly been involved as we don’t have a programme on gbv that caters for disabled people but somehow there are cases whereby we have been involved where women with disabilities were abused.’ (manager of dpo for people with visual impairments) some dpo members discussed concrete ideas on how they could assist people with disabilities and what services they wanted to provide. this included income-generating activities, networking opportunities and advocacy around accessibility. one dpo member explained that they needed to discuss their needs for support with government. ‘we are challenged financially as an association, but our intention is to meet with government officials such as district commissioner. … we want to help in assisting disabled people with funds to start small businesses like gardens, bags, leather produce etc. at their homes and to liaise with government officials for any opportunities that can improve their well-being by also providing market places where they can show case their different crafts and sell their products in order to earn a living. there is also a need to ensure access to infrastructure developments such that wheelchair users can have full access. i was able to advocate for some government offices which offered direct services to disabled people such as omang offices to be moved to ground floor.’ (manager of dpo for people with physical disabilities) another dpo representative reported that they discussed issues with government representatives; however, providers of government initiatives and services were not always inclusive of people with disabilities and this provided barriers to dpos to reach into the communities. ‘firstly, we don’t have transport to bring us here [people with physical disability]. secondly, when i ask for inclusion in socio-economic activities like ipelegeng [transport service] and tirelo sechaba [government initiative], these service providers are reluctant to come and discuss issues we face as people with disabilities.’ (manager of dpo for physical disabilities) organisational opportunities to increase participation both ngos and dpos identified a number of internal change opportunities. these included employment and participation of people (particularly women) with disabilities, increasing accessibility (universal design and reasonable accommodation), training and capacity building and enhancing networking (table 3). table 3: identified organisational opportunities for change. in the interviews one manager of an ngo focused on hiv stated that although their organisation had existed for 21 years they had ‘never recruited or employed a woman with disability’ and as the organisation ‘is also an employer they have the opportunity to bring them [women with disabilities] on board’. ‘we can also improve our services by employing someone with disabilities in our organisation. we should also act synonymous to other stores such as spar who support disabled people by involving them through employment.’ (manager from aids service organisation) furthermore, increased involvement of people with disabilities in capacity building programmes and the design of programmes were seen as important opportunities for change. inclusion was also seen as a feasible strategy that could be sustained over time in the communities (rather than isolated projects). ‘the strategy that can be introduced is to involve the beneficiary in the learning programme because sometimes we come up with the programme as we feel, but people … have not been part of it from the beginning, so inclusion of beneficiaries to hear their thoughts, their challenges in the localities, i think that strategy could be sustained along within the communities.’ (manager of aids service organisation) representatives from ngos and dpos also highlighted that disability sensitisation and training of staff to provide accommodation for disability was needed in their organisations. accommodation measures needed for the blind and deaf were often highlighted, but not measures for those with intellectual, physical or other disabilities (e.g. less visible conditions such as autism or mental health disorders). ‘it [accommodation of people with disabilities] is a challenge, because we take it for granted, we work with people in communities, train them to go and reach out into homes and if the material does not cater for those people [people with disabilities] then it becomes a challenge, we are not printing anything in braille, it is a challenge and it is something that we acknowledge needs to change.’ (manager of ngo focusing on men and boys) ‘i think we could make sure that our staff can interpret in sign language that is very, very important. it will be added value in our programmes, particularly those addressing issues of gender-based violence. the other thing is to utilise more pictures than words, i feel that would add value. perhaps as part of our induction package we need to make sure that we are able to deliver and make sure that everyone will be able to access our services.’ (manager from aids service organisation) representatives from dpos proposed the development of specific programmes that would address the needs of people with disabilities, including specific programmes around violence. these programmes were envisioned as being comprehensive including a number of areas such as employment, education and violence prevention. ‘looking at our current programming, it may be ideal to have a specific programme that addresses the needs of [deaf] women and young girls and does not only focus on gbv but focuses on the needs of the women and girls and that includes employability, … economic empowerment, … education, … rights and issues of gender-based violence.’ (manager of dpo for the deaf) furthermore, enhancing networking among dpos and ngos was seen as an opportunity for change in terms of both improving referral to services and gaining support for the organisation. ‘opportunities that we have, that make us reach out to women and girls with disabilities, are networking with other ngos or dpos. we usually refer clients, who we can’t help, to other organisations to assist us. for example we have lentswe la ba na le bogole in francistown and social workers.’ (manager of aids service organisation) lastly, participants also used the checklist to identify organisational structures and procedures that their organisation could change internally (table 3). most organisations identified adjusting their policies and strategies, and increasing their linkages to poverty alleviation programmes and other ngos or dpos as areas that they could improve. organisations also identified training of staff as opportunities for change, with ngo representatives feeling less confident that they could arrange training related to disability sensitisation, sign language interpretation or screening and identification of disability. few ngos and dpos identified that they could address measures of accessibility of their facilities and services through universal design and reasonable accommodation. needed support from national departments and communities participants also identified external structures, procedures and stakeholders that were needed to improve accessibility, inclusion and support and through which their organisations could increase participation and service delivery to women and girls with disabilities. this included areas of national policies and government, increased accessibility of public services, involvement of caregivers, knowledge creation, dissemination and disability inclusive monitoring and evaluation. firstly, participants revealed that some of the ngos and dpos already benefited from existing policies but that within the mainstream settings policies and services still neglected people with disabilities. in fact, one participant highlighted that the country did not have a specific disability law and that the existing disability policy is old and had been under review for a long time. hence there was a need to develop policies and regulations. ‘we don’t have any specific law for people with disability. we want to move away from the welfare policy [the old disability policy] which is now under review for six years … to people who can participate in issues that affect their lives. so that is the first thing we want to see, policy and law reform, so that we can sign the convention on the rights of persons with disabilities. but even if we don’t sign our laws should be inclusive to enable people with disabilities to access services and participate in the economic issues, education and so on.’ (manager of aids service organisation) furthermore, involvement of people with disabilities and their service organisations in policy design and development was seen as essential to ensure that people with disabilities benefited from them. ‘government should make policies for us as people with disabilities to benefit from designated programmes and not just come with policies that do not benefit us but are said to be for us.’ (manager of dpo for people with visual impairments) secondly, the inaccessibility of buildings was seen as related to government offices who approve buildings under development; these departments were seen as essential in assuring that buildings were transformed to be accessible to people with disabilities. ‘it [inaccessibility] goes back to the council that approves the buildings. when people build they need to undergo a process and submit their plans to the council, who look at the plan and give the go ahead … they also need to take into considerations that there is a certain group [people with disabilities] that also need to be catered for.’ (manager of aids service organisation) thirdly, ngos and dpos identified the need to train government employees in key services such as the police, justice, health and education to ensure that they understood the need of people with disabilities. ‘justice still needs a lot of training, our police or anybody who is responsible for justice, like the lawyers who represent the person, they need training.’ (manager of dpo for people with physical disabilities) ‘the challenges we have are related to language barriers, when something happens to them [women with disabilities] … we need to assist them to access judicial services. … if there was someone overseeing disability issues in the northern region especially for the deaf … that would help.’ (manager of ngo focusing on violence against women) furthermore, caregivers and families were identified as important role players that needed information about care and support for their family members with disabilities. this included the ability to understand abuse and violence and how to prevent it. ‘we talk about abuse even with parents. … parents of children with disabilities don’t know how to protect them from abuse … parents don’t know what to do. … parents need to be taught about girls with disabilities so that when your child is not home, they don’t just think that they are playing with others… social workers should provide parenting lessons on children with disabilities during clinic visits … parents should be grouped and be taught that as people with disabilities we need special care based on our needs.’ (manager of dpo for people with intellectual disabilities) lastly, monitoring and evaluation was seen as an important tool to understand the needs of people with disabilities but also to measure which training and programmes have reached how many people or women with disabilities. participants here highlighted that tools needed to be developed to monitor the inclusion of people with disabilities. ‘very important is … that you measure … how many trainings you have that cover these women and girls [with disabilities], what kind of training are those and how often have you provided them during a particular period. so it is a matter of developing a tool that will measure the statistics of the women and girls with disabilities.’ (manager of dpo for all disability types) discussion the provided sub-study is a first description of the capacity of ngos and dpos in botswana to increase participation of women and girls with disabilities and ensure access to services and programmes addressing violence, including those who are involved in hiv or srhr programmes. the sub-study is limited to the information provided by the leadership of the ngos and dpos participating in this study. none of these organisations had women with disabilities in leadership positions. the fieldwork was led by women with disabilities who prompted these leaders to identify gaps and solutions for their organisations’ activities and services (using the audit and question guide). this approach challenged participants to identify gaps and solutions to increase participation of women and girls with disabilities in their organisations’ activities. the results show that the leadership of ngos and dpos is prepared to drive inclusion of people with disabilities in programmes that address violence and can identify a number of gaps and opportunities. firstly, the results suggest that the facilities of ngos and dpos lack basic elements of universal design and reasonable accommodation; hence they are inaccessible to some people with disabilities. however, these organisations should provide guidance and good practice to drive inclusion of vulnerable populations such as people with disabilities. besides potential lack of sufficient funding, lack of awareness and tools to assess accessibility and inclusion contributes to the inaccessibility of ngos and dpos. in this study the disability audit enabled participants to identify accessibility and inclusion gaps as well as opportunities for change. the usage of a disability audits could become a standard tool for ngos and dpos and guide the improvement and adaptations of these organisations’ facilities, services and activities. disability audits for ngos and dpos in africa have not been published, because validated and easy-to-use tools still need to be developed. hence, the further development and validation of tools such as the one used in this study could become a research priority. secondly, the data revealed that ngos and dpos had complementary pockets of expertise that could be utilised to improve access to and inclusion in programmes that address violence. on the one hand ngos had a wide geographical reach and developed expertise to address hiv or violence against women and girls in urban and rural areas. however, ngos did not include or prioritise disability and their staff lacked knowledge about disability and its intersection with violence. knowledge gaps included ethical considerations around disability and skills to accommodate disability-related needs. understanding of disability by ngo representatives was influenced by doctrines common in mainstream and key programmes in the region. for instance, some ngo representatives held the notion that they ‘shouldn’t know the disability status of their clients’. ethical regulations around confidentiality of somebody’s ‘status’ are common in the context of hiv in southern africa, but this approach hinders identification of disability needs and, through this, adjustments that ensure access and equity. similarly, the generic ‘include all’ approach led to the notion that organisations would include people with disabilities via default. without understanding of and allocating resource to accommodate disability-related needs this approach is no more than lip service. representatives from ngos therefore identified capacity building and programme adaptations as important pillars to mainstream disability across their programmes. on the other hand, dpos understood the disability-related needs of their constituency but lacked geographical reach, information on other disability groups and strategies on how to mitigate violence against women and girls with disabilities. as a result, dpos provided limited support or guidance to ngos and were not utilised enough to address violence against women and girls with disabilities. this speaks to improvement in networking between ngos and dpos, capacity building to increase dpo members’ knowledge on the intersection of disability, gender and violence and the development of strategies to address violence against women and girls with disability. in addition, such training should target ngo and dpo members at the same time so these complementary organisations can learn from each other and build networks for future collaboration. thirdly, the study provides the participants’ perspectives on how to increase their organisations’ capacity to promote participation of and reduce violence against women and girls with disabilities. the research tools, such as the audit, and also the participatory approach and leadership of researchers with disabilities, provided an enabling environment in which participants were able to identify their opportunities for change. for instance, participants suggested that ngos and dpos needed to develop their organisations’ polices and plans to prioritise disability-related needs and violence prevention and through this allocate resources to enhance accessibility, inclusion and focus on prevention of violence against women and girls with disabilities. participants also highlighted the need to employ women with disabilities and to conduct training of staff to address disability needs in the context of existing programmes that aim to prevent violence or address hiv or other srhr issues. these suggestions blend in with disability mainstreaming approaches practised in other countries in africa (christopher blind mission & comprehensive community based rehabilitation tanzania 2012). these approaches promote adjustments of mainstream services in terms of increased accessibility and inclusion of people with disabilities both as clients or patients and staff. participants suggested also including disability-focused approaches such as the training of staff on the intersection of disability and violence and the development of focused programmes to address violence against women and girls with disabilities. in southern and eastern africa disability-focused approaches are promoted to address specific gaps or vulnerabilities. in the context of violence against women and girls with disabilities this has specifically been discussed in terms of communication support for police and judicial services and accessibility of comprehensive sexuality education (unfpa 2018a, 2018b). the combination of the disability-mainstreaming and disability-focused approaches is internationally known as the twin-track approach, which has been promoted in developmental work with people with disabilities (christopher blind mission & comprehensive community based rehabilitation tanzania 2012; handicap international 2014). the twin-track approach may therefore also be suitable for ngos and dpos to drive inclusion and accessibility in programmes addressing violence in botswana. lastly, the alight study has shown that dpos and ngos operate in an environment where both national policies and public services are not addressing disability-related needs adequately (hanass-hancock et al. 2018a, 2018b). inaccessibility and lack of service delivery increase the costs that occur when dpos and ngo work with people with disabilities, as individuals or organisations have to provide the resources to accommodate disability-related needs (e.g. transport, sign language) (banks & polack 2013; hanass-hancock et al. 2017). participants, therefore, highlighted that policymakers and staff at public services need disability inclusion training, that caregivers need sensitisation and support and that facilities need to be adapted to be accessible. participants emphasised the need to develop national disability regulations, policies and laws that address the lack of disability inclusion in service delivery and drive training of staff and resource allocations. this echoes the findings of the alight situation analysis, which showed that botswana needs to develop disability policies and laws and that disability inclusion and accessibility need to be mainstreamed across hiv, gbv and srhr policies and strategies (hanass-hancock et al. 2018b). during the drafting of this article, botswana was developing a new disability policy and strategy and has indicated that the country will sign the crpd. hence, there is ample opportunity to ensure that the prevention of violence against women and girls with disabilities is integrated into the new national disability policy and law. policy and programme reform can formalise disability mainstreaming and drive specialised projects that address vulnerability of women and girls with disabilities (christopher blind mission & comprehensive community based rehabilitation tanzania 2012; handicap international 2014; unaids 2017). such a process will also enable resource allocations and the development of monitoring and evaluation systems that can track progress in disability inclusion, increase in participation and reduction in violence against women and girls with disabilities (hanass-hancock et al. 2018b). for instance, existing programmes and national surveys such as the gbv indicator survey of the general household survey can include disability indicators and through this inform programmes that address violence against women. existing ngo programmes that address violence against women can include disability questions in their reporting and evaluation processes and dpos can measure provision of disability training and support to these ngos. the important denominator for all these reforms has been highlighted by the participants and lies within building the capacity of service providers, policymakers and ngo and dpo staff to better understand and address the increased vulnerability of women and girls with disabilities to violence. enabling the participation and leadership of women with disabilities in this context is a necessity. acknowledgements we would like to thank the batswana women and men with and without disabilities who provided us with their insight, knowledge and experiences during the fieldwork. we would also like to acknowledge the support and contributions of dorcas taugobong and the project advisory committee members mussa chiwaula, dr godisang b. mookodi, dr boitumelo mangope, dr alice welbourn, dr andrew gibbs, norma xoliso msebele, moffat louis, jacques lloyd, dr ingrid van der heijden and sokwe monametsi who reviewed and commented on the steps and outputs from this study. we would also like to acknowledge the support of the botswana office of the president and the department of gender affairs for this project. furthermore, we are deeply grateful for the generous support of the american people through usaid, as well as their representative staff in the botswana office, who made this project possible. competing interests the authors have declared that no competing interests exist. authors’ contributions j.h.-h. is the principal investigator of the alight study. she designed the project and research tools, trained the team and oversaw the fieldwork process, analysed the data and wrote the first and final drafts of the article. t.k. is a co-investigator of the alight study. he has been part of conceptualising the study, training and supervising the fieldworker team and fieldwork, data entry and cleaning. n.m. is the project coordinator and has been part of the implementation and analysis team. she has supported the development of case summaries that were the basis for this article. m.m. is the in-country project officer and has conducted the fieldwork, was part of the analysis team and has reviewed this article. funding information this work was funded 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global and regional estimates of violence against women: prevalence and health effects of intimate partner violence and non-partner sexual violence, viewed 10 july 2019, from http://www.mrc.ac.za/sites/default/files/files/2016-07-11/whovawreport2013.pdf. zimbabwe parents of handicapped children association, unknown, disability and hiv & aids. a participatory rapid assessment of the vulnerablitiy, impact and coping mechanisms of parents of disabled children, zphca, bulawayo. zuber-skerritt, o., 2015, ‘participatory action learning and action research (papar) for community engagement: a theoretical framework’, educational research for social change (ersc) 4(1), 5–25. abstract introduction research methods and design results and discussion conclusion acknowledgements references about the author(s) surona j. visagie division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa nomvano kentane division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa eastern cape department of health, gqeberha, south africa andile sirhayi division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa eastern cape department of health, mount frere, south africa princess n. sineke department of sport, rehabilitation and dental sciences, faculty of science, tshwane university of technology, pretoria, south africa eastern cape department of health, bisho, south africa luphiwo l. mduzana division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa department of rehabilitation medicine, faculty of medicine and health sciences, walter sisulu university, mthatha, south africa citation visagie, s.j., kentane, n., sirhayi, a., sineke, p.n. & mduzana, l.l., 2025, ‘health systems solutions to prosthetic service delivery obstacles in a low-resource setting’, african journal of disability 14(0), a1837. https://doi.org/10.4102/ajod.v14i0.1837 original research health systems solutions to prosthetic service delivery obstacles in a low-resource setting surona j. visagie, nomvano kentane, andile sirhayi, princess n. sineke, luphiwo l. mduzana received: 20 aug. 2025; accepted: 27 oct. 2025; published: 10 dec. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: lower limb prostheses improve functioning and quality of life after amputation. the challenges in prosthetic service provision in south africa have been researched. however, possible solutions have not been explored. objectives: this article presents obstacles to prosthetic services in the eastern cape province of south africa, and suggests research and development, health systems and clinical care solutions to alleviate these obstacles. method: using a pragmatic approach, current evidence, unpublished research, grey sources and author expert opinion are presented in an integrated manner to show the barriers and recommendations for solutions in five key areas that are budget, supply chain and stock barriers, poor continuity of care, insufficient human resource numbers and skills, unrecorded demand for services, and geographical stumbling blocks. results: tender documents, ring fencing budgets and appointing professional procurement officers are recommended to address supply chain barriers. conscientious record keeping and an audit of appointment practices are recommended to enhance continuity of care. outreach clinics, compulsory community service and skill shifting should be explored in response to geographical barriers and shortage of human resources. early screening and referral might decrease waiting times. innovative manufacturing strategies such as 3d printing and direct socket manufacturing should be researched. a database can assist with predicting new device-repair and replacement needs. conclusion: prosthetic service delivery is a complex open system, and a systems approach should be followed when implementing any of the suggested solutions. contribution: the suggested solutions might assist in alleviating the barriers experienced in prosthetic service delivery in low-resourced settings. keywords: assistive technology; budget; supply chain; tenders; continuity of care; human resources; skills; database; geographical barriers. introduction an amputation is often a lifesaving procedure. even so the loss of a limb is associated with psychological trauma and reduction of physical function (calabrese et al. 2023; piscitelli et al. 2023) that often impacts quality of life negatively (calabrese et al. 2023). prostheses assist with functional restoration, psychological wellbeing, economic activity, enhancement of quality of life (von kaeppler et al. 2021), decreased mortality rates (brügger et al. 2023) and health care cost saving (diment et al. 2024). achieving these outcomes are dependent on fitting a prosthesis at the earliest possible time (baumann et al. 2020), ensuring a comfortable fit, correct alignment and length (paquette et al. 2024; piscitelli et al. 2023; webster, borgia & resnik 2023), providing components suitable to support the person’s activity level within cost constraints (baumann et al. 2020), satisfying the person’s aesthetic requirements (paquette et al. 2024; piscitelli et al. 2023) and rehabilitation by a multidisciplinary team (fard et al. 2023). despite the advantages of prostheses, few south africans are fitted with prosthesis after amputation (ennion & wu 2019; manickum, ramklass & madiba 2019). figures as low as 8% are mentioned by manickum et al. (2019). evidence further shows long waiting times for first time prostheses, repairs and replacement (ennion & johannesson 2018; ennion & manig 2019; pienaar & visagie 2019; theron & visagie 2024). in 2018, mduzana, visagie and mji (2018) reported a backlog of over 600 prosthetic devices in the eastern cape (ec) province. this number has increased to 1276 in 2024 (eastern cape department of health [ecdoh] 2024). the ecdoh annual report of 2023/2024 shows that 331 users received a prosthesis in the financial year as opposed to a target of 600. repairs and accessories were supplied to just under 2000 prostheses users during the same period. the reasons for low fitting rates, long waiting times and waitlists are multifaceted and complex. the public health system in south africa is under siege and prosthetic services are not exempted from the general health system challenges such as procurement and supply chain challenges (ecdoh 2024; morris et al. 2021), management challenges (ecdoh 2024; ennion & johannesson 2018; morris et al. 2021), inadequate infrastructure, equipment and material (ennion & manig 2019), and insufficient staff numbers (ennion & johannesson 2018; maqaqa, ariana & polack 2021; morris et al. 2021). furthermore, prostheses are expensive devices with price tags that can exceed $50 000.00 (zar 900 000.00). because of subsidies and the use of less technologically advanced components, the average cost per prosthetic device in the ec province government sector is r7000.00 ($390.00) (ecdoh 2024). even so, individuals often cannot afford to pay for them out of pocket, making them unattainable for many (world health organization [who] 2025). in south africa, prostheses are funded by government, medical insurance schemes, the road accident fund and workman’s compensation (theron & visagie 2024). the south african government subsidised prostheses according to the patient’s economic status under the uniform patient fee schedule. this system categorises patients into three groups: fully subsidised, partially subsidised and full paying. the classification is based primarily on household income. it is estimated that approximately 70% – 80% of the population qualifies as fully subsidised, making them eligible to receive prostheses free of charge through the public healthcare system (gordon, booysen & mbonigaba 2020). government prosthetic services are provided across the country through 23 orthotic and prosthetic (o&p) centres, which are usually situated in cities or bigger towns. some of these prosthetic centres conduct outreach clinics to surrounding areas. nevertheless, economic challenges affect both service provision and users’ ability to access services. on the provision side, economic challenges manifest in a shortage of providers, stock and equipment as well as an inability to finance more expensive prosthetic components that support higher levels of functionality (ecdoh 2024). users might struggle to afford the transport (burger & christian 2020; ennion & johannesson 2018; gordon et al. 2020) to access service provision points that are usually in larger centres and might be hundreds of kilometres from their homes (burger & christian 2020; ennion & manig 2019; naidoo & ennion 2018; tshaka, visagie & ned 2023). despite these known challenges that prosthetic services and users face in south africa and the ec province specifically, there is little to no evidence on possible solutions. the notable exception being a study performed by ennion, johannesson and rhoda (2017) that explored the use of a direct manufacturing socket system to enhance prosthetic service provision in a rural area of kwazulu-natal province. thus, this article aims to present the current evidence regarding access to prosthetic services in the ec province of south africa and suggests research and development, health systems and clinical care solutions to alleviate the barriers. the article is structured according to certain key areas to be addressed (figure 1). under each key area, current evidence from the literature, unpublished research, grey sources and author opinion will be presented in an integrated manner to show the barriers and recommendations for solutions in research and development, health systems and clinical care. figure 1: conceptual framework. context: eastern cape province the ec province, one of south africa’s poorest provinces, has vast rural areas with limited healthcare access. the three o&p service centres in the province are situated in urban areas that is nelson mandela bay metro, buffalo city and or tambo district (ecdoh 2024) (figure 2). thus, users who often live in poverty must travel extensive distances over poorly maintained roads, while few transport options are available, to attain care (tshaka et al. 2023). limited outreach programmes and a lack of capacity to provide follow-up worsens the situation (maqaqa et al. 2021). figure 2: map of the eastern cape province. research methods and design design and data sources a pragmatic approach was followed because the article reports on a real-world problem at a specific time and place and identifies possible solutions to the problem (allemang, sitter & dimitropoulos 2021; kaushik & walsh 2019). adhering to principles of pragmatism, the most appropriate data sources and knowledge that could shed light on the problem and suggest solutions were identified through reflective decision making. pragmatism acknowledges the value of experiential knowledge and does not privilege certain knowledge types above others (allemang et al. 2021). thus, our data sources include current evidence, unpublished research, financial reports and the first author’s clinical and research experience. the ctiterion for including sources was that it provided information that could assist with facilitating problem solving and enhancement of social justice (allemang et al. 2021). possible solutions are based on evidence and strategies that have been implemented and seem useful, but have not been researched, and finally those that are in the incubator stage and must still be implemented. current evidence: the search was pragmatic rather than scoping or systematic as the focus was on identifying evidence that could illuminate (allemang et al. 2021) the key areas addressed in this article. key words used in the literature search included: procurement, budget, expenditure, supply chain, tender processes, south africa. prosthetic design, manufacture, additive manufacture, 3d. prosthetic service, prosthetic rehabilitation, provision, access, south africa. posts, vacant, south africa. rehabilitation systems, south africa. unpublished master’s theses: both studies used a qualitative descriptive design to gather information on the present conditions regarding prosthetic service access in the ec province from persons experiencing those conditions directly (bradshaw, atkinson, & doody 2017). sirhayi (2024) explored the experience of persons waiting for a lower limb prosthesis, while kentane (2024) explored the experiences of prosthetists. user experiences (sirhayi 2024): the aim of our study was to explore the experiences of people needing o&p services who have encountered delays in accessing o&p care at one o&p centre in the ec province. data were collected in 2024 from people who experienced delays of more than 3 months. a convenient sample of six participants, of whom four were waiting for prosthetic services, was identified from the records of the o&p centre. participants were between the ages of 38 years and 63 years. the distance they had to travel to prosthetic services varied between 15 km and 200 km. they had been waiting from 10 months to 6 years for their devices (table 1). data were collected with semi-structured in person interviews conducted in isixhosa, the participants’ first language. interviews were guided by a self-developed interview schedule and lasted between 30 min and 50 min. questions focused on the causes of the delay in accessing services, and the effect these delays had on participants’ emotional and functional well-being. data were transcribed verbatim and then translated into english. inductive thematic analysis was used (braun & clarke 2022). table 1: demographic profile of the prosthetic user participants. prosthetists’ opinions (kentane 2024): the aim of the study was to explore the opinions of prosthetists on the factors that contribute to delays in prosthetic measurement and fitting in the three ec province o&p centres. the study population included 29 medical orthotists and prosthetists (mops) who were full-time employees of the ecdoh for a minimum of 2 years at the time of our study in 2024. although assistants and orthopaedic footwear technicians are involved in production of prostheses devices in the laboratory, they were excluded from the study as only prosthetists participated in patient-interactions and clinical decision-making processes. total population sampling was used (etikan, musa & alkassim 2016). of the 29 prosthetists, 15 consented to participate. table 2 shows the demographic information of the participants. data were collected through three focus group discussions (fgds), conducted by the third author. a fgd guide was used, which focused on: the reasons why patients wait for an appointment to be measured for a prosthesis. the reasons why patients wait to be fitted with the finished prosthesis. other service delivery challenges participants faced. what participants thought could be done to reduce waiting times. table 2: demographic details of the focus group participants. data from the three fgds were analysed separately, through inductive thematic analysis (braun & clarke 2022) after which cross-centre analysis and triangulation was carried out. trustworthiness was supported by total population sampling, using verbatim quotes, member checking, cross-centre triangulation, a reflective diary, and a description of the setting, methods and participants’ demographics (kentane 2024). financial reports: the ecdoh annual report 2023–2024 provided financial information (ecdoh 2024). experiential knowledge: the authors provided experiential knowledge. they came from different backgrounds but share an interest in prosthetic service improvement. surona j. visagie, a qualified physiotherapist, is an academic with a background in prosthetic rehabilitation and research. andile sirhayi and nomvano kentane are mop service providers in the ec province who did a masters’ degree on the topic. princess n. sineke is the provincial manager of o&p services in the province. luphiwo l. mduzana is the head of the o&p department at walter sisulu university (a tertiary education institution in the ec province) and is working towards a phd with prosthetic service provision as a central concept. the first author drafted the manuscript after which all authors provided feedback and additional information. where authors did not agree on content it was discussed, and consensus was reached by them. data analysis: iterative deductive thematic analysis was performed. the five key areas provided in figure 1 constituted the themes. data from the four sources were triangulated during the analysis. ethical considerations approval and permission to conduct the studies were obtained from the health research ethics committee at stellenbosch university (reference numbers s23/10/252 and s23/10/263, respectively). the ecdoh and the o&p unit’s head of departments provided permission. participation was voluntary and written informed consent was obtained from participants. all data are secretly stored on password-protected computers. results and discussion budget, supply chain, and stock barriers financial constraints are often cited as the reason for poor health care service delivery in south africa. this is true for rehabilitation (maqaqa et al. 2021; van biljon et al. 2022), assistive technology (ennion & manig 2019; maart et al. 2024; visagie et al. 2020) and prosthetic services also (ennion & johannesson 2018; pienaar & visagie 2019). the allocated ec province budget for o&p was r106 334 million in the 2023/2024 financial year with an under expenditure of r56 572 million (ecdoh 2024). there was also under expenditure of the budget allocated for o&p services in the ec province in the 2022/2023 financial year (ecdoh 2024) (table 3). table 3: orthotics and prosthetics budget and expenditure over the financial years 2023/2024 and 2022/2023. earlier we have shown that the prosthetic target was not met for the 2023/2024 financial year. the annual financial report blames this on a shortage of consumables. supplier invoices were not paid, and suppliers stopped delivery of consumables and components (ecdoh 2024). kentane (2024) concurred. participants in this study also shared similar views and stated: ‘production came to a halt; guys be frank here. since october we have not been able to do much production work. it’s april now.’ (p5, fgd3, f, 25 years) ‘there is no material as we speak. we hope to have it soon but now we don’t. our reality is that there is no material.’ (p4, fgd3, f, 26 years) in addition to a lack of consumables and components kentane (2024) found that equipment was also inadequate. one participant stated the following on the subject: ‘we do not have all the necessary tools to push production. there is a lot of borrowing, and it delays having to go around borrowing tools before you can get the work done. some of the machines are also not working so we have to do things manually which can take your time.’ (p5, fgd1, m, 40 years) cumbersome procurement processes might be at the heart of these challenges. all ecdoh invoice payments must be approved by the ecdoh cost containment committee. this contributes to delayed or non-payment of suppliers. in addition, general overspending within the ecdoh impacts cash flow and prevents processing of o&p invoices. consequently, although the budgeted funds exist on paper, they are not actually available in the o&p accounts. irregularities and challenges related to procurement processes, such as underspending, have been plaguing the south african public sector (fourie & malan 2020). fourie and malan (2020) attributed underspending to planning and implementation challenges because of inadequate project and financial management skills, alluding to the fact that procurement officers might be unqualified for the job. in ec province o&p centres, at least one mop is appointed to assist with procurement. they are not trained in procurement processes and learn on the job. including service providers, with technical expertise, in the procurement process is good practice. however, they must be trained (israel 2023). an integrated procurement system with different stakeholders (administrative and clinical staff) jointly planning, implementing and problem-solving procurement and supply chain actions with the assistance of appropriate software programmes optimise flow of information, funds and goods in a timely and cost-effective manner, reduce waiting times and instances of stock-outs (israel 2023). it also enhances transparency, responsibility and accountability in procurement (israel 2023). fourie and malan (2020) makes the following general suggestions to improve procurement: rigorous stewardship and strategic approach instead of the current administrative approach that focusses on technical aspects collect, analyse and provide feedback on high quality data and evidence on the procurement system’s performance assess whether more central procurement systems might not enhance efficiency (i.e. at provincial level rather than at prosthetic centre level) invest in professional procurement officers. the financial report further indicates that the lack of a tender document necessitates the use of a three-quote system, which might increase the cost of components (ecdoh 2024) and lead to the purchasing of poor-quality components (kentane 2024): ‘substandard components. that supplier gave us [prosthetic] knees that were faulty. everything was a mess.’ (p4, fdg3, f, 26 years) louw et al. (2023) indicated that tender documents are advantageous to assistive technology (at) procurement processes, while off tender procurement is hampered through its complexity. a tender provides protection to the funder, the ecdoh, in this instance, because it specifies function and design features, minimum quality and durability standards, minimum numbers of products that should be available throughout the course of the year, set prices, delivery timeframes, warrantees and guarantees (visagie et al. 2020). finally, stock theft is an unfortunate reality that puts the supply chain under further pressure. in may 2025, the eastern cape herald (a local newspaper) reported that assistive devices worth around r130 000.00 ($720.00) (still in their original packaging and labelled as the property of an o&p centre in the province) were found at a scrap metal dealership. stronger inventory management systems with frequent risk assessments, stock audits and enhanced physical security via surveillance and access control might be effective strategies that can be adapted to prevent theft. in addition, provision of refresher training to store managers on inventory management policy, and ethical conduct training for all support staff are essential. in addition to supply chain challenges, poor continuity of care hampers prosthetic service delivery in the ec province. poor continuity of care continuity of rehabilitation care is often challenged in south africa through among other things breakdown of communication and ineffective referral pathways (charumbira et al. 2024; van der westhuizen & visagie 2025). participants in an ec province study done by charumbira et al. (2024) on access to rehabilitation indicated that improved telephonic communication with service providers would improve access. sirhayi (2024) also found communication between healthcare providers and users lacking with users not being updated on progress. one participant noted: ‘the communication between me and the service providers is not there. for instance, there were people who came to do those things, measuring and all that [at an outreach clinic] but i never heard from them again on the progress … we do not get any information or feedback on when we should come for the devices that they casted us for.’ (p1, waiting 6 years, f, 43 years) on the other hand, kentane (2024) showed that prosthetists occasionally tried to contact users without success. another participant stated the following on the subject: ‘sometimes you call to find out when they will be able to come but do not find them, or you leave a message, and she or he does to come back to you. then they come months later, and the prosthesis is now not fitting because of stump changes maybe.’ (p2, fdg2, m, 29 years) giving a return date for fitting at the time of measuring a device seems like a good idea: ‘if patients can leave here with a return date that would be great. because you’ll say to your patient, i will call you but now maybe the phone is lost or something and you don’t find it. if they had a date, they would just come without you even having to call.’ (p2, fdg3, f, 28 years) another participant in the study carried out by kentane (2024) raised concerns about this strategy and stated: ‘but giving a date is sometimes a risk. remember this [prosthesis] is custom made and manufactured by one mop. now if i say come back 3 weeks from now and on the day i’m sick or fall sick before i even begin the leg. the patient comes and won’t get their leg.’ (p1, fdg3, f, 34 years) precise record keeping including phone numbers, residential addresses, and contact details of next of kin might be helpful. information on the nearest clinic should also be recorded. clinic staff and community workers can use this information to trace patients that could not be reached via phone. communication barriers are compounded by unclear referral pathways. patients are often referred to the o&p centre for a prosthesis without being referred to pre-prosthetic rehabilitation (ennion & rhoda 2016; manickum et al. 2019). thus, when the patient accesses the o&p centre the residual limb might not be matured or the o&p centre might be out of manufacturing materials as described earlier. the patient is then told to access a district hospital for pre-prosthetic rehabilitation. this practice causes delays, a need to return a second time to secure an appointment, a lack of follow-up and frustration, particularly when combined with financial constraints and transport challenges: ‘i cannot go to boh [bedford orthopeadic hospital] by myself [without an initial referral]. i must first go to the nearest referral hospital to book an appointment. i spent one and a half hours reaching this hospital.’ (p1, waiting 6 years, f, 43 years) it is also disconcerting to encounter the situation where appointment slots are fully booked. it seems easy to address this by simply moving to the subsequent month or year in the scheduling system. sending people home without an appointment and telling them to return later shows little empathy and possibly little understanding of the cost implications and transport barriers people face. continuity of care is also adversely affected by insufficient human resources. human resources according to the approved establishment, 71 personnel positions are allocated for o&p services in the ec province. as shown in table 4, less than 50% of these positions are filled. only 2 out of 6 chief positions and 9 out of 38 mop assistant positions were filled at the time of writing the article. table 4: established and filled orthotic and prosthetic service positions in the eastern cape province. kentane (2024) concurred with the findings reported in table 4. one of the participants stated: ‘we’re short staffed in this centre and most people are not replaced when they resign or go on pension. we don’t have mop assistants. there is also the issue of not having a receptionist and having to sacrifice one mop for that.’ (p4, fdg1, m, 53 years) of the prosthetists, 8 hold diplomas, 13 have bachelor’s degrees and 2 have a master’s degree. in south africa, there is no differentiation between mops who hold a diploma, bachelor’s or master’s degree when it comes to occupational title and employment. they are registered as mops at the health professionals council of south africa and employed in the government sector without recognition of qualification in salary scale, job levels or promotion (mduzana et al. 2020). promotion and salary increase is based solely on years working for government rather than qualifications, continuous education exploits, skills and/or other professional attributes. these poorly structured career pathways do not comply with international standards (who 2017) and might lead to losing professionals to the private sector and international markets. the norm for mops is 5–10 per million of the population (who 2017). thus, 23 prosthetists should be ample for the ec province population of 7.23 million (republic of south africa [rsa] 2022). however, the norms were determined, assuming sufficient support and managerial staff (who 2017). with less than 50% of management and support staff positions filled, mops must juggle responsibilities and cannot focus on their core jobs. time-consuming older manufacturing methods are still used in the ec province, which means mop assistants are crucial to facilitate timeous manufacturing processes. in addition to filling vacant posts, compulsory commentary service and skills shifting might lessen the human resource challenges. kentane (2024) suggested that compulsory community service might help to alleviate the burden. compulsory community service was implemented in 1998 in south africa and currently includes most health care service professions (gardiner 2023; reid et al. 2018), albeit not mops. the aim of compulsive community services is to facilitate health care service provision to all citizens and to afford young professionals the opportunity to further clinical and professional skills (reid et al. 2018). studies have shown that compulsory community service makes a positive contribution to service delivery and facilitate professional development in south africa (gardiner 2023; matlhaba 2023; reid et al. 2018; van stormbroek & buchanan 2016). however, supervision is not always deemed adequate (matlhaba 2023; reid et al. 2018). the community service health professionals (health professionals doing compulsory community services in south africa) are also faced with heavy work loads, frustration (van stormbroek & buchanan 2016), theory practice implementation gaps, inexperience (matlhaba 2023) budget and equipment constraints, language barriers as well as physical and emotional exhaustion (gardiner 2023; matlhaba 2023). thus, compulsory community service might help alleviate staff shortages implementation in the mop profession should be approached with caution and would benefit from lessons learned by other professions. skills shifting: skills shifting might provide another option for managing a shortage of prosthetists. currently, the scope of practice in south africa follows global north realities where all categories of staff are available at all levels of care in sufficient numbers. in settings such as the ec province where only one or two professional groups are available at many service delivery points, it might be worthwhile to re-consider scope of practice and introduce skills transference where possible (visagie et al. 2020) skills: prosthetic function depends on socket comfort and fit among other things, which depends on the skills of the prosthetist (yang, aslani & mcgarry 2019). participants in the study by kentane (2024) explained the challenges caused by varying competency levels among the mops: ‘we had two or three cases here where we saw that this patient will end up not being helped because no one was experienced enough [to assist him or her].’ (p3, fgd3, f, 26 years) ongoing professional development also seems to be a problem: ‘we have been struggling to get proper training workshops.’ (p4, fgd2, m, 26 years) insufficient skills among rehabilitation service providers in south africa are also described by maart et al. (2024). the health professionals council of south africa requires professionals to obtain a minimum of 30 continuous professional development (cpd) points per annum. however, being compliant does not mean prosthetists are obtaining relevant training and skills. the cpd points can be obtained outside the scope of practice of mops. in-house cpd accredited training appropriate to local needs sourced by the department of health might be a solution. this can be performed in partnership with walter sisulu university, a local tertiary institution that trains mops. demand for services it is unclear whether the numbers of users are steadily increasing or whether these challenges have led to the growing backlog. participants in the focus groups (kentane 2024) indicated that users waited 3–4 years to be measured for a prosthesis. in some instances, recently referred users were seen as referred while the historic backlog is dealt with separately (kentane 2024): ‘yes, we have a list or backlog we are working to clear. we book those patients to come for measurement. at the same time a patient who is not on that list, if they walk in now, are referred to us now, we cast them. we do not book him for another date because if we do that it will increase the same backlog, we are trying so hard to clear.’ (p4, fdg2, m. 26 years) this in-house decision is not equitable and the ethics behind it are questionable. two strategies that might speed up the prosthetic manufacturing process and thus reduce waiting times are three dimensional (3d)-printing and direct socket manufacturing. 3d-printing can provide functional patient-specific prosthetic parts in short times, at low prices (abbady et al. 2022; van der stelt et al. 2021). in a 3d pilot project, in sierra leone, patella tendon bearing transtibial prosthetic sockets were manufactured for eight users. at 6 weeks follow up, all eight were still wearing and walking with the prosthesis (van der stelt et al. 2021). despite rapid growth and a positive inclination towards additive manufacturing in south africa (dzogbewu et al. 2022), it has not been taken up extensively in the field of lower limb prosthetic production. this might be because of safety concerns. a lower limb prosthesis must be structurally strong enough to carry the weight of the user. additional research is needed. ennion et al. (2017) explored the satisfaction, function and quality of life users’ who received a transtibial prosthesis using the direct socket manufacturing method in a south african setting. findings showed that although this method reduced waiting times, but it was inconclusive regarding user function, satisfaction and quality of life. the initial outlay also comes at a high cost, and prosthetists must be trained and certified to use the system. in the final quarter of 2024, 19 mops from all three o&p centres in the ec province received direct socket manufacturing training and certification. in this period, 78 users were fitted with transtibial prostheses using the direct socket manufacturing method. direct socket manufacturing will be rolled out further in the ec province, through outreach clinics (late 2025 or early 2026). further research is required to determine which socket manufacture procedure is most efficient and effective in south african settings. the demand for prosthetic services is inflated by inappropriate referral for prostheses and a lack of early screening: ‘everyone who is amputated is put on the [waiting] list but not everyone is eligible to receive and use the prosthesis. that makes the waiting list look longer than it is.’ (p4, fgd1, m, 53 years) owolabi and chu (2022) indicated that people are frequently promised a prosthesis at the time of amputation, even when prosthetic rehabilitation is not the most suitable and/or the safest option (donaghy et al. 2020). therefore, a person might access prosthetic services only to be informed that they will not receive a prosthesis. the person will have to wait additional time for the appropriate services and devices. extra costs might be incurred, and rehabilitation outcomes might be compromised. there is also a risk of emotional trauma as a prosthesis symbolises hope and normalcy for people with amputations (groud & perennou 2022; jefferies, gallagher & philbin 2018). to ensure that services are optimally focused, a screening tool to predict whether a person is a candidate for prosthetic rehabilitation or will be best supported through another rehabilitation pathway should be utilised. several screening tools, for example, guidelines for screening of prosthetic candidates: lower limb (mduzana et al. 2018), the amputee mobility predictor assessment tool (ampnopro) (gailey et al. 2002), classification guidelines on industry websites for example össur® and otto bock® as well as in-house guidelines used at some o&p centres exist. however, none of these have been standardised and validated for a south african context. they are used interchangeably and intermittently. often prosthetic description is based on empirical knowledge causing a lack of transparency and possible inequity in prescription (donaghy et al. 2020). the final decision is made by prosthetists during the initial appointment. as shown in the ec province, this might be more than 2 years after amputation surgery. a standardised tool, to be completed after surgery, must be developed and used throughout the province to guide appropriate referral and rehabilitation intervention after lower limb amputation. a study is currently under way to develop such a tool. an additional barrier is the lack of provincial and national databases with information on the number of people with amputations, prostheses issued and components used. without this information, future prosthetic needs cannot be forecasted, and budgets and services cannot be planned (morris et al. 2021). developing a database is a costly time-consuming endeavour. however, some advances towards establishing prosthetic needs can be made over the short term by capturing relevant data through ongoing monitoring of services (morris et al. 2021). the regular collection, analysis and feedback of service delivery data are essential to determine if the service achieves its objectives. without ongoing monitoring, it is impossible to measure success, plan future services and apportion limited resources (fourie & malan 2020). a database will also assist with planning to ensure that repair and replacement services can be provided as needed. prostheses maintenance and repairs can be a challenge in lower-income countries because of the high costs, limited materials and resources, small workforce and restricted access to prosthetic centres (abbady et al. 2022). focus group participants reported that servicing existing users led to a reduction in the manufacturing time and components available to manufacture new prosthetic devices (kentane 2024): ‘patients that are already prosthetic users don’t go on a waiting list. so the components or the resources that we use mostly get depleted on those patients and only a few new patients are usually attended to in a financial year.’ (p1, fgd1, m, 40 years) prosthetic services span the user’s lifetime; repairs and replacement will be needed (diment et al. 2024). this need should be included in the budget and procured number of components and consumables for any given period. not having sufficient components to provide services to current and new users points to a lack of planning and might mean records are not used for future planning. it further underscores the need for monitoring and databases at service delivery points and provincial level. geographical access transport systems, road infrastructure and distances: several authors have recognised inadequate transport systems, poorly maintained roads and long distances as factors limiting access to health care and assistive technology services generally in south africa (maart et al. 2024; morris et al. 2021; van biljon et al. 2022; visagie et al. 2020), the ec province (tshaka et al. 2023; vergunst et al. 2016) and prosthetic rehabilitation specifically (ennion & johannesson 2018; ennion & manig 2019; naidoo & ennion 2018). these barriers are closely tied to users’ financial status (ennion & johannesson 2018; naidoo & ennion 2018). while inconvenient to wealthier south africans, transport and geographical barriers can be overcome through access to a privately owned vehicle and financial resources to cover the running costs of travelling long distances. however, if indigent, your choice is reduced or sometimes removed completely. public transport in the form of minibus taxis is the only means of transport between many rural and urban areas. their costs, in addition to poor accessibility for people with physical impairments, especially wheelchair users, prevent some people from using them (duri & luke 2022; fredericks, visagie & van niekerk 2024). furthermore, they seldom provide door-to-door service. thus, people still need to negotiate the distance between their houses and the pickup points (fredericks et al. 2024; naidoo & ennion 2018). these access routes are usually unpaved, uneven, with rocks, potholes, tree roots, dust and mud depending on the season. they often traverse uneven terrain with steep hills and tight bends (morris et al. 2021; tshaka et al. 2023). participants in the study performed by sirhayi (2024) also confirmed these barriers: ‘i am unable to get to the main road … there are big stones that i cannot traverse. the roads are gravel and full of stones and hilly … they get muddy when it’s rainy and because i only have one leg, it’s risky.’ (p3, waiting 10 months, m, 49 years) maqaqa et al. (2021), ennion and johannesson (2018) and van biljon et al. (2022) found that patients choose to reduce rehabilitation visits because of transport costs. participants in the study carried out by sirhayi (2024) highlighted poverty and unaffordable transport: ‘i must pay taxis to get to the hospital, yet i am not working because the skill that i have requires me to stand, so money is the problem.’ (p1, waiting 6 years, f, 43 years) wheelchair users are charged double and sometimes triple as shown by fredericks et al. (2024) and supported by findings from sirhayi (2024): ‘whenever i must go to the hospital … i pay for it [the wheelchair], myself and the person i am with, and finances are the problem.’ (p4, waiting 3 years, f, 63 years) government subsidised transport was provided between health care institutions (sirhayi 2024): ‘i wait overnight at the local hospital for the ambulance to take us to boh. the schedules of the ambulances vary. [sometimes] i miss the information and only hear about it afterwards.’ (p1, waiting 6 years, f, 43 years) however, people accessing prosthetic services might be left behind if the vehicle is full since they do not have a life-threatening condition (visagie & likando 2025). transport challenges can be mediated by bringing services closer to users through outreach clinics and decentralisation. mobile outreach units can be used to bring rehabilitation practitioners to rural areas regularly (morris et al. 2021). however, participants in the study by kentane (2024) described not having enough staff to conduct outreach clinics and not having a vehicle: ‘we end up being short staffed so we haven’t been able to spare staff that can go out and do outreach, and the fact that we don’t have an allocated vehicle.’ (p2, fgd2, m, 29 years) studies have also found that a lack of suitable vehicles hamper outreach visits (ennion & johannesson 2018; maart et al. 2024; maseko, adams & myezwa 2024). maseko et al. (2024) confirm that outreach services suffer because of insufficient staff numbers. in addition, challenges such as the department not paying for accommodation and the mop assigned to the clinic falling sick, lead to cancelling of outreach clinics. outreach clinics might still be part of the answer. but then the services provided there must be expanded and the clinic must be a steady feature, included in service planning (maseko et al. 2024) not stopped when snags hit such as a reduced number of service providers. it can be operated from a provincial level with service providers appointed specifically to be employed at outreach clinics. the mobile delivery point is set up with the necessary equipment, consumables and stock. another option is to employ service providers at decentralised points as suggested by one participant in the study by kentane (2024). one of the participants stated: ‘it would be better if instead of the outreach clinics we just had an mop in every hospital like they do with other clinical support staff.’ (p4, fgd3, f, 26 years) prosthetic services are dependent on expensive equipment in addition to human resources. thus, the preceding suggestion might not be financially viable. however, the health and welfare sector education and training authority of south africa provides limited funding for employment of recently qualified mops who struggle to find employment. it might be possible to place some of these mops at district hospitals with the necessary equipment and stock and pilot the effectiveness of mop services at district level. the district-based mop can address basic needs while users with more complex needs can be referred to the o&p centres. limitations while the literature has been used, much of the information provided is based on the experience of the authors and thus open to bias. consensus between the four authors on the shared information should reduce personal biases but it remains a reality to be aware of. the research carried out by sirhayi (2024) and kentane (2024) was part of formal graduate studies and were examined; however, these articles were not published in peer reviewed accredited journals. conclusion the described barriers might be more widespread in south african and other global south settings. thus, the suggested solutions might be applicable to a wider context than in the current article. prosthetic services are dependent on a complex open system and a systems approach should be followed when implementing the suggested solutions. the local, up and downstream effect of change at any one point must be considered to ensure the most appropriate solutions are identified (de savigny & adam 2009). in addition, implementation should go hand in hand with research. any new strategy whether it relates to operational systems or clinical care must be researched to ensure it is efficient, effective and support end user function and satisfaction (de savigny & adam 2009). budgets must be ring fenced, and posts must be filled. it is important to do comprehensive research that includes end user outcomes over time of new technologies such as direct socket (ds) manufacturing and 3d printing before full scale implementation. acknowledgements this article is partially based on research originally conducted as part of andile sirhayi’s and nomvano kentane’s master’s research assignments titled ‘a qualitative exploration of the experiences of orthotic and prosthetic users who encountered delays in accessing orthotic and prosthetic services in an eastern cape setting’ and ‘factors contributing to delays in prosthetic measurement and fitting in eastern cape public hospitals’, submitted to the division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, in 2024. the theses are currently unpublished and not publicly available. the theses were supervised by surona j. visagie. the manuscripts have been revised and adapted for journal publication. the authors confirm that the content has not been previously published or disseminated and comply with ethical standards for original publication. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. credit authorship contribution surona j. visagie: conceptualisation, methodology, formal analysis, writing – original draft, writing – review & editing, supervision. nomvano kentane: conceptualisation, methodology, formal analysis, investigation, data curation, writing – review & editing. andile sirhayi: conceptualisation, methodology, formal analysis, investigation, data curation, writing – original draft, writing – review & editing. princess n. sineke: writing. luphiwo l. mduzana: writing – review & editing. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the 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https://doi.org/10.4102/ajod.v10i0.839 webster, j., borgia, m. & resnik, l., 2023, ‘prosthesis nonuse and discontinuation in united states veterans with major limb amputation: results of a national survey’, prosthetics and orthotics international 47(6), 575–585. https://doi.org/10.1097/pxr.0000000000000248 world health organization (who), 2017, standards for prosthetics and orthotics, viewed 02 june 2025, from https://apps.who.int/iris/bitstream/handle/10665/259209/9789241512480-part1-eng.pdf?sequence=1&isallowed=y. world health organization (who), 2025, strengthening prosthetics and orthotics services, viewed 09 april 2025, from https://www.who.int/teams/health-product-policy-and-standards/assistive-and-medical-technology/assistive-technology/prosthetics-and-orthotics-services#. wikimedia commons, 2017, map of the municipalities in the eastern cape province of south africa, with all municipalities named and district municipalities shaded different colours, viewed n.d. from: https://commons.wikimedia.org/wiki/file:map_of_the_eastern_cape_with_municipalities_named_and_districts_shaded_(2016).svg yang, s.e., aslani, n. & mcgarry, a., 2019, ‘influences and trends of various shape-capture methods on outcomes in trans-tibial prosthetics: a systematic review’, prosthetics and orthotics international 43(5), 540–555. https://doi.org/10.1177/0309364619865424 abstract introduction research methods and design ethical considerations findings and discussion conclusion acknowledgements references about the author(s) deshini naidoo school of health sciences, university of kwazulu-natal, south africa jacqueline van wyk school of clinical medicine, university of kwazulu-natal, south africa robin joubert school of health sciences, university of kwazulu-natal, south africa citation naidoo, d., van wyk, j. & joubert, m., 2017, ‘community stakeholders’ perspectives on the role of occupational therapy in primary healthcare: implications for practice’, african journal of disability 6(0), a255. https://doi.org/10.4102/ajod.v6i0.255 original research community stakeholders’ perspectives on the role of occupational therapy in primary healthcare: implications for practice deshini naidoo, jacqueline van wyk, robin joubert received: 15 jan. 2016; accepted: 18 oct. 2016; published: 28 feb. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: primary healthcare (phc) is central to increased access and transformation in south african healthcare. there is limited literature about services required by occupational therapists in phc. despite policy being in place, the implementation of services at grassroots level does not always occur adequately. objectives: this study aimed at gaining an understanding of the challenges of being disabled and the services required by occupational therapists (ots) in rural communities in order to better inform the occupational therapy (ot) training curriculum. method: an exploratory, descriptive qualitative design was implemented using purposive sampling to recruit 23 community healthcare workers from the ugu district. snowball sampling was used to recruit 37 members of the ugu community, which included people with disability (pwd) and caregivers of pwds. audio-recorded focus groups and semi-structured interviews were used to collect data, which were thematically analysed. ethical approval was obtained from the biomedical and research ethics committee of the university of kwazulu-natal (be248/14). results: two main themes emerged namely: firstly, the challenges faced by the disabled community and secondly appropriate opportunities for intervention in phc. a snapshot of the social and physical inaccessibility challenges experienced by the community was created. challenges included physical and sexual abuse, discrimination and marginalisation. community-based rehabilitation and ideas for health promotion and prevention were identified as possible strategies for ot intervention. conclusion: the understanding of the intervention required by ot in phc was enhanced through obtaining the views of various stakeholders’ on the role. this study highlighted the gaps in community-based services that ots should offer in this context. introduction the right to equitable health services for people with disabilities (pwds) is supported by south africa’s (sa) commitment to the un convention on the rights of pwds and the sa constitution (mcintyre & atatguba 2012; sherry 2014). the inequitable access to health services for pwds is well documented in recent research (duncan et al. 2012; harris et al. 2011; van rooy et al. 2012). but despite the country’s commitment to pwds at a policy level, the implementation of these policies is still problematic. barriers such as the lack of transport, extended waiting periods, negative attitudes of the public and lack of knowledge among healthcare workers have been reported (maart et al. 2007; mcintyre 2012; mji et al. 2009; moodley & ross 2015; scheffler, visagie & schneider 2015; visagie & schneider 2014). research by duncan and watson (2009) has demonstrated the strong links between disability, poverty and physical contextual challenges which impact on pwds. these factors are further compounded through pwds exclusion from social and economic opportunities and their increased risk of contracting non-communicable diseases (coovadia et al. 2009; duncan et al. 2012). pwds are also more vulnerable to physical, sexual and psychological abuse, and they are often easily exploited (neille & penn 2015a, 2015b). social marginalisation, material deprivation added to limited access to education and infrastructural challenges such as poor roads, costly transport, inaccessible terrains and poor access to health services contribute towards feelings of powerlessness, vulnerability and lack of voice of pwds (duncan et al. 2012; jelsma 2007; kahonde, mlenzana & rhoda 2010; lorenzo 2012; neille & penn 2015a). after 1994, a geographically based district health system was introduced to provide public healthcare. service delivery in the sa health system is offered at tertiary, secondary, district and primary levels of care. efforts to promote the principle of ‘health for all’ have seen the implementation of the national health insurance (nhi) by the department of health (doh 2011). the objectives of the nhi include improved access to quality health services, especially for vulnerable populations such as pwds, social redress in the health system, procuring services on behalf of the population and the strengthening and delivery of more efficient public services (doh 2015). this led to a doh strategy that strongly advocates for the provision of rehabilitation services in community settings and an adherence to a primary healthcare (phc) approach. this strategy included all therapists assigned to districtand secondary-level hospitals, in order to offer more appropriate rehabilitation services (doh 2015). this aimed at improving access to healthcare for people in communities and made a shift from primarily offering a curative and medical focus to one where the emphasis was on prevention of disease and disability, promotion of health and well-being and rehabilitation for those affected by disability (doh 2011). doh policies recognised the need for rehabilitation, intersectoral collaboration and programmes to promote health and facilitate social inclusion of pwds. the national rehabilitation policy (nrp) views ‘rehabilitation’ as an important component of phc (doh 2000). both the integrated national disability strategy (inds) and the nrp are based on a social model of disability and advocate for rehabilitation services to facilitate empowerment, collaboration within sectors and the community, social inclusion and to encourage pwds to participate in daily activities to allow for integration in all spheres of life including social, economic, education and recreation (doh 2000; south african government 1997). the who (2010) and the nrp (2000) identified community-based rehabilitation (cbr) as a strategy to improve access to rehabilitation and to foster community development, equality, poverty reduction and social inclusion of pwds. both the inds and the nrp recognise the role of rehabilitation in improving the pwds’ physical, psychosocial and vocational well-being and its role in improving their overall quality of life (doh 2000; south african government 1997). despite the existence of policies with good intent, there is generally poor implementation and a lack of translation of such policies/frameworks into practice (visagie & schneider 2014). current therapy services at a phc or chc level tend to provide individual facility-based rehabilitation sessions focused on treating acute conditions such as stroke and rheumatoid arthritis in twice monthly or monthly sessions (scheffler et al. 2015). furthermore, there appears to still be an entrenched adherence to the medical model with ‘lip service’ being paid to cbr in sa, which manifests itself in ots resorting to the familiar hospital care approach even in settings requiring a different strategy. this suggests support for the principle but not necessarily a readiness to abandon the comfort of institution-based rehabilitation services. wilding (2011) found that ots unconsciously conform to hospital-based protocol, which hinders occupation-based practice. likewise, méthot (2004) found that the dominant medical epistemology hinders occupational therapists being able to apply health promotion and disease prevention strategies. a ‘one size fits all’ approach, which borrows heavily from the western, and mostly eurocentric, rehabilitation approaches and is applied in some developing country’s approaches to rehabilitation such as asian and south american countries (fransen & van riel 2005; thompson et al. 2010; van bruggen 2010), does not always apply to the sa context. these approaches do not accommodate the unique, idiosyncratic concerns that are relevant to the southern african context; for example, the effects of environmental factors, such as the rural terrain and inadequate resources, on pwds ability to perform basic daily activities, as well as taking into consideration the unique african cultural beliefs about disability and health. the main goal of occupational therapy (ot) is to promote health and well-being through enabling individuals withor at risk ofdisability to engage in life-sustaining and health-promoting occupations. it achieves this goal through the facilitation of daily activities that promote physical and psychological well-being such as self-care and vocational tasks (world federation of occupational therapy [wfot] 2010). ot education and practice for service delivery at a phc level has thus shifted its focus from education with a narrow technical focus to encompass a more comprehensive occupational justice framework, where members of a community have equal opportunities for meaningful and satisfying participation in their daily activities. the main premise of this framework considers how physical, social, political and emotional barriers impact on the individual’s ability to access community services for participation. being denied opportunities to participate in meaningful daily life activities results in occupational restriction and concomitant marginalisation of the pwd, which may result in additional illnesses at a psychological and physical level (whiteford 2004; wilcock & hocking 2015). visagie and schneider (2014) reported that current interventions at a phc level were not client-centred and there was not proper collaboration with pwds during treatment planning. furthermore, language barriers, a failure to seek the goals of users, adherence to technical, curative interventions with little consideration of the determinants of ill health and insufficient explanations to pwds about possible interventions often limits the effectiveness of intervention given at phc level. to be effective in delivering within a phc service, occupational therapists (ots) have to re-evaluate the models used for practice in the community. they need to refocus their efforts on enabling greater participation for pwds in daily activities despite their experiences of physical, socio-political and psychological barriers. additionally, ots need to focus on prevention of secondary and tertiary complications such as development of pressure ulcers and contractures and promotion of health and well-being (e.g. improvement of quality of life through social inclusion). ots also have to demystify unfounded beliefs or stereotypes and address the community’s reactions to pwds and improve their living conditions, thereby advocating for their basic rights (lorenzo 2012; rule 2008; watson & swartz 2004). the changing face of phc delivery in sa has necessitated the review of older principles and approaches such as alma ata, to accommodate challenges unique to the country (scheffler et al. 2015; visagie & schneider 2014). for example, health professionals such as ots need to identify community-specific determinants of the burden of disease. ots need to assist the community with development and implementation of health promotion programmes that address the identified community-specific determinants and health behaviours related to human occupation with due consideration of the dominant culture within that community. ot training is often accused of having an overloaded curriculum that does not allow students adequate time to assimilate much of their knowledge. the unburdening of the curriculum requires a refinement of existing modules and essential components such as phc to fit into existing time constraints. in addition to this, the rapidly changing health delivery scenario, since 1994, and the need to ‘keep up’ with these changes, has often lead to the dilution of aspects of phc and even to losses of essential concepts, while ot training centres stagger under the increasing demands to stay abreast and be relevant in their training. guidelines for training and education of ots in sa include adherence to a comprehensive phc approach and its core principles of cbr, the rights-based and integrated multidisciplinary approaches (otasa 2015). these policies, when applied, change what ots are expected to be doing when working in the community. for example, ots are expected to accept non-traditional roles in new complex environments such as being the project facilitator in a secondary prevention initiative aimed at stimulating children with disabilities rather than offering direct therapy (otasa 2015). also, ots are expected to initiate and participate in intersectoral collaborations (e.g. needing to negotiate with local counsellor or municipal transport services that offers affordable transport for pwds to phc clinics) (otasa 2015). the policies promote a re-conceptualisation of the ot role in phc to include a greater advocacy for pwds, promoting their social reintegration in activities and collaboration with members of the community in project development. anecdotally, many community service therapists can only visit a clinic once every 6 weeks because of the large number of clinics to be visited and the shortage of ots working in the community. these community service ots are currently only delivering rehabilitation services and conducting home visits while assigned to phc clinics, which is only partially aligned to the reconceptualised ot community service. ot graduates from the university of kwazulu-natal (ukzn) predominantly spend their first year of work in the kwazulu-natal (kzn) province while employed in the doh. the university has a memorandum of understanding to train graduates for service in decentralised and rural phc settings as part of the kzn doh’ s strategic plan to improve training of health graduates and provide greater access to health services in rural areas(kwazulu-natal doh 2014). this study targeted the district of ugu, in kzn, because it represents a typical district level site where ukzn ot graduates provide community service. hospitals in the ugu district are also being considered for a decentralised undergraduate training platform, that is, satellite service-learning sites in rural or underserved areas. this paper formed part of a larger study that was aimed at creating contextual evidence to inform the graduate competencies needed for effective ot service delivery at a phc level. the purpose of this particular paper is to describe the challenges experienced by community stakeholders, that is, ugu community members with disability, their caregivers and the community healthcare workers (chws) who work with pwds in order to better understand what community services are required of ot. this paper argues that there are still gaps in the service ots can and should be offering in this particular context and that ot practice needs to change to deliver a more relevant service. research methods and design study setting the study was conducted in the province of kzn because the occupational therapy programme of the ukzn requires graduates to provide mandatory year of community service to peri-urban and rural hospitals in this region. all sa-trained health professionals have to provide a mandatory year of community service in a public health facility, generally at a district level (south african government 2002). this policy was implemented to increase the provision of health services to communities, mostly at a district level where disadvantage is high and in rural and peri-urban areas in sa. while there are usually a doctor and other rehabilitation professionals, the ots may sometimes be the sole therapists in the area and often have to work under the supervision of another health profession, for example, the medical manager. the ugu district has been classified as a designated rural node for phc delivery. designated rural nodes refers to rural areas where population is predominantly rural, there are low levels of income (r500 to r1200 per month), extreme poverty and high dependency rates (858 youths below 14 years per 1000 people in age category 15–65). additionally, there is fragmented service delivery by different governmental spheres, high unemployment rates, low levels of formal education and high dependency on social welfare grants (harmse 2010; pillay 2007). the ugu district and the hospitals and clinics within it are being developed as a decentralised training site for undergraduate students. therefore, this study will assist in informing the graduate competencies these community service ots need to acquire in order to work in settings such as this. ugu health district is located in the lower south coast region of the province of kzn and is geographically 16% urban and 76% rural areas. it has a population of approximately 722 484 people with 60% of the population aged 15–64 while 33% of the population is younger than 15 years old (local government handbook 2016). ugu has an unemployment rate of 35% with an average income per capita of between r800 and r2953 per month. of the households, 24% have access to piped water inside their homes and only 18% have access to flushing toilets (local government handbook 2016). health services are provided using a primary health care approach through the district health system, which involves all levels of care (kzn doh 2016). the geographically based district health system offers services at quandary, tertiary, secondary, district and primary levels of care (couper & hugo 2005). the ugu health district has two district and one regional hospital staffed by both permanent and community service occupational therapists (kzn doh 2016). design a descriptive qualitative study was used to explore the perceptions of community members and chws from the ugu district, on their experiences of coping with disability and the services required from ots to assist them. an isizulu-speaking research assistant who had experience in conducting research for the ukzn rural health centre and was familiar with the community and the clinics in the northern and southern ugu district assisted in gathering data. the research assistant recruited participants for the study, facilitated the audio-recorded semi-structured interviews and focus groups and collected the cameras with the pictures that the community members took. her knowledge of the community and use of isizulu to collect the data was aimed at maximising trust and ensuring clarity of understanding. the principal researcher was an observer in the focus groups and visited some homes of the participants with the research assistant acting as interpreter in these instances. this was done to allow the principal researcher to immerse herself in the study setting, in order to better understand the context and the challenges experienced by the pwds. data collection was done over a 3-month period. participants, sampling and recruitment strategies a purposive sampling strategy was used to recruit chws who worked with pwds and who either worked for or visited the eight phc clinics served by the community service occupational therapists. the research assistant explained the purpose of the study to chws at each phc clinic with a view to recruit them for participation on the study. twenty-three chws were selected and consented to participate in the study. snowball sampling was used to recruit community members with disability and their caregivers from the community. the participants were deemed suitable for inclusion if they were aged 19–70, lived in ugu north and south and attended one of the clinics served by the occupational therapists working in the district. the chws suggested potential participants from the community for the study who were invited to a meeting during which the research assistant explained the purpose of the study and the requirements of the study was explained. from the five recruitment meetings, 37 members of the community (pwds and their caregivers) aged 19–70 were finally selected and consented to participate. apart from participating in interviews, the community participants were also given cameras to document challenges they experienced and the ethics around taking photographs were explained. by taking photographs participants were able to represent their views about health and occupations that were relevant to them (hergenrather et al. 2009). the photographs were used for discussion in the focus groups. procedure community participants met at local venues for the five audio-recorded focus groups of approximately an hour, which were conducted in isizulu by the research assistant with the principal researcher attending as an observer. similarly, four focus groups for chw were conducted (see table 1). in the community member focus groups, the research assistant used the photographs taken by the participants to commence the discussion around the challenges they experienced, the occupations they did and had difficulty with and their ideas of the services ots could offer. most of the participants had seen a therapist at least once at a phc clinic or at the hospital. the assistant asked participants if they knew what an occupational therapist was prior to starting the focus group, and if anyone did not know, she provided an explanation of the profession. table 1: participant description and data collection methods. the community pwds and their caregivers were grouped according to age, for example, 19–40, 41–70, for each focus group in order to explore perceptions of both younger and older participants. it also allowed the younger members to participate more openly without being inhibited by their elders during the focus groups, this conforming to the isizulu cultural norms of respect. there were a maximum of five participants’ in both the focus groups of the community members and the chws. the questions posed to both sources centred on their perceptions of health, the daily activities that they had difficulty performing and the services they felt they required from ots. additional community participants were selected for the semi-structured interviews, which were aimed at elaborating on the themes that emerged from the focus group. eight semi-structured interviews took place in participants’ homes. these interviews were conducted for 45–60 minutes and were conducted by the research assistant in isizulu. the audio-recorded data were transcribed, translated into english and verified. the observations in community participants’ homes were conducted concurrently with the semi-structured interviews during which the researcher spent time observing the participants’ performing their daily activities. these observations helped to establish how the person with a disability dealt with the various challenges within their environment and how others in the community related to them. the information gained re-enforced the information collected from the photographs and the focus groups, which assisted in triangulation of the data and robustness of the data. data analysis data were analysed using inductive thematic analysis (miles, huberman & saldana 2014; creswell 2013). the steps of data analysis included familiarising the researcher with the data, writing notes, developing codes and noting patterns and themes (creswell 2013). each of the 18 transcripts was analysed separately. the identified categories across all transcripts (18 transcripts) were then grouped according to recurring patterns into themes by the principal researcher. a third round of analysis yielded two main themes; namely, the challenges experienced with engaging in occupations and how ot intervention and services could address these challenges. the principal researcher met with a co-researcher who had not been part of the data collection in order to discuss the nature of the findings and attain consensus with regard to the emerging themes. themes and subthemes that emerged provided insight into the challenges faced by pwds in rural and semi-rural areas. verbatim quotes were used to maintain the voices of the participants. ethical considerations ethical clearance was obtained from the biomedical research ethics committee of the uknz (be248/14). gatekeeper permission was sought from the ugu health district, hospitals to which the chws were assigned and the kzn provincial ethics office prior to commencement of the study. additionally, permission was sought from the local leader in the areas where the focus groups were held in ugu north and south to gain permission for community entry and to access people in the community for the study. participation in the study was voluntary. the consent form was read and explained to illiterate participants who signed consent using an ‘x’. all data were treated as confidential and the participants were given pseudonyms during analysis and write-up. written permission was sought and received from participants for the use of the photographs and pictures used in this publication. all the interviews were conducted at an accessible venue and participants were reimbursed for travel costs from a medical education partnership initiative grant. refreshments were also served to all participants. trustworthiness confirmability, triangulation and trustworthiness were ensured through an audit trail, by collection of data from multiple sources and through the observations conducted by the principal researcher. key points from the focus group or interviews were repeated at the end of the interview to allow for verification through member checking to ensure an accurate reflection of the discussion. the isizulu data were transcribed in isizulu, translated into english and then back-translated to ensure veracity of the data. the researcher kept a reflexive journal during the data collection and data analysis process to minimise bias. the reflexive journal entailed the primary researcher expressing her assumptions and experience though a reflexive statement prior to beginning the research and continued as her writing analytical memos during the data gathering and analysis. this process of documenting decisions made contributed towards confirmability of the data. findings and discussion demographic characteristics of the participants the participants represented pwds, caregivers and chws from peri-urban and rural districts of ugu in kzn. the ages of participants ranged between 19 and 70 with the majority ranging from 40 to 60 years. the disabled community participants had predominantly physical disabilities with the exception of one person who was partially sighted and two people who had mental health disorders. the main source of income for participants was a disability grant and the average income per household ranged between r1900 and r2000 per month. judging from their income and living conditions, this group could mostly be classified as living in poverty as defined by the united nations economic and social council (1998): a denial of choices and opportunities, a violation of human dignity, lacking in the basic capacity to participate effectively in society and not having enough to feed and clothe a family. it also implies difficulty in accessing educational, social and health structures such as schools or clinics. … it means insecurity, powerlessness and exclusion of individuals, households and communities. it means susceptibility to violence, and it often implies living on marginal or fragile environments. (p. 1) the feedback from this group of inter-related community stakeholders provided a fair account of the challenges that pwds face in this community. however, because some participants had minimal contact with, or knowledge of ot, the comprehensiveness of their insight into the occupational therapist’s role and scope was limited. in spite of this, they were able to provide a snapshot of the occupational and social challenges faced by pwds of that district, which allowed for insights into issues such as human rights, the effects of being denied the right to participate in daily activities and the role of ots working in similar phc settings. two main themes, each with respective subthemes, emerged from the interviews and focus groups discussions. these were: the challenges faced by pwds and their caregivers, and suggestions by participants about opportunities for ot interventions to address the challenges experienced by pwds. accessibility was a sub-theme that emerged in discussions on the challenges experienced by pwds. not only did accessibility relate to essential resources such as clinics and shops but also access to resources such as water and firewood, which are essential for survival in the setting. for some, these challenges were aggravated by high transport costs, the geographically difficult terrain typical of rural kzn and limited financial resources as indicated in the quote below: ‘i struggle with water so i end up hiring someone to fetch water for me.’ (participant 26, female pwd, community focus group 5) another access challenge related to the financial and terrain constraints faced by pwds living in such areas. these include the often undignified ways in which they are transported such as in a wheelbarrow or being carried piggyback by a caregiver, which affects the dignity of the pwd and is also extremely taxing on the health and well-being of their caregiver/family member. the following examples speak to these issues: ‘when we have to take her to the clinic we end up pushing her with a wheelbarrow.’ (participant 14, female caregiver of person with a physical disability, community focus group 3) ‘the roads are not in a condition to push a wheelchair, so we [the caregivers] end up having to carry those people. sometimes on their backs for a distance of ± 7 km.’ (participant 12, female chw, focus group 3) in addition to this, general accessibility within and around the homes, mostly because of terrain and environmental obstacles seriously impact on issues of self-care such as transferring, dressing, bathing and access to toilets as demonstrated in figure 1 to figure 3. figure 1: wheel chair inaccessibility, an example of the terrain surrounding one of the homes of a person with physical disability, which limits this person’s ability to be independent in mobilising around the home. figure 2: difficulty in accessing the toilet for a person with a physical disability. figure 3: moving oneself with a disability from a matress on the floor into a wheelchair is difficult for most pwds and requres additional skills and strength, which is different from transferring them from a standard raised bed. from an occupational justice perspective, these conditions impact on the ability of the pwd to access a toilet, washing and other facilities in and around the home. participants found these challenges impacted their dignity, leaving them unable to perform those occupations essential for self-care and preparation for interpersonal interactions with others and thus also the potential to access the labour market. the costs and demands to access transport to and from possible work places are also expensive, such that working becomes an almost impossible option. furthermore, the authors suggest, a form of financial compensation for pwds living in such areas, who are from low-income groups, could subsidise their transport costs or that more efficient access to public transport be made available. it is also necessary to adjust the terrain around their home environments to make these more accessible. occupational therapists working in phc settings should not only be able to assess the circumstances and make realistic recommendations for alterations but they should also advocate for appropriate policy changes to support the financial needs or contextual changes to allow for greater participation of pwds in their community and in local labour markets. for example, ots could convince the local municipality that they have an accessible bus that picks up pwds to transport them to the clinic. infrastructural challenges such as the lack of affordable transport, access to running water and electricity adds to restrictions in accessing health services and engaging in essential meaningful daily tasks for this vulnerable group of people (duncan & watson 2009; townsend & polatajko 2013; kahonde et al. 2010). most of the challenges of the participants were exacerbated by poverty as the participants did not have the social or economic capability to address them (bateman 2012; jelsma 2007; neille & penn 2015a; van rooy et al. 2012). these limitations also restrict their basic rights as stated in the sa constitution and article 19 of the un convention of rights for persons with disabilities (south african government 1996; united nations enable 2006). the restrictions also contribute to the marginalisation and isolation of pwds and their ability to participate in meaningful roles within in their families and communities (duncan & watson 2009; lorenzo et al. 2013; shakespeare 2008; wilcock & hocking 2015). the second sub-theme relating to challenges was that of abuse, discrimination and marginalisation of pwds. these acts were being perpetrated by both members from the community and families and caregivers of pwd. the community discriminated against and marginalised pwds. criminal elements in their communities, particularly unemployed youth who often were also substance abusers, appear to prey on the vulnerability of pwds as illustrated in the following comment: ‘… what i [pwd] see here is bad because if these drug boys would come they will just push the door open because i’m using the nail as a locker [lock]. the other one who wears an artificial foot even made an example that if she wasn’t able to talk these boys would come and rape her without anyone knowing because she wouldn’t be able to scream for help.’ (participant 29, female pwd, community semi-structured interview 1) this particular comment highlights the lack of security and its concomitant evocation of severe stress, anxiety and fear experienced by many pwds who become imprisoned in their homes, unable to participate safely and equally in daily community activities. these experiences concur with literature (astbury & walji 2014; naidu et al. 2005) pwds reported abuse from family members and this was confirmed by the chws. this included mainly verbal abuse, neglect such as being locked-up and confined to a room, or being denied food. the latter often occurs despite the family members’ reliance on the disability grant issued to the pwd, which supports the household. the following comment demonstrates the concerns of a particular pwd participant: ‘… disabled people need some form of counselling because families gets frustrated looking after us and they end up verbally abusing us, which leads to being stressed and sometimes traumatised.; (participant 16, female pwd, community focus group 3) this highlights the importance of ots adequately informing those they serve about their rights and how to deal with these if they are violated. pwds and their caregivers reported that members of the community lacked a general understanding of the pwds condition. people of the local community often laughed at or they threatened them. the following comments demonstrate the cruelty and distress caused to pwds by misinformed members of the community: ‘… when i hear a person laughing at me about this child, my soul is burdened with even more pain. they [neighbours] said ‘how is your cripple, did they call it for grant renewal’. it hurt me a lot.’ (participant 27, female caregiver of child with physical disability, community focus group 5) ‘i find that people fail to understand or don’t want to understand him [disabled child] and that the other kids beat him.’ (participant 19, female caregiver of a child with a psychical disability, community focus group 4) ‘even within my family there was talk that i was faking my blindness. he [husband] never saw the problem i was facing until the documents came back saying i was disabled.’ (participant 12, female person with a visual disability, community focus group 3) some pwds found it difficult to adjust to their disabled conditions and felt guilty for being a burden to their families. they felt burdensome as a member of their family assumes a caregiver role, which meant that person may have to sacrifice their schooling or employment opportunities. this concern was confirmed by caregivers who noted their own potential, personal engagements and quality of life declined when they assumed a caregiver role. chws added that pwds often became socially isolated from the rest of their communities and that they required opportunities to socialise. ‘my daughter had to give up going to school to take care of me. she used to cry every day in the beginning, it’s hard for her and me.’ (participant 3, female pwd, community focus group 1) ‘because i am looking after a sick person i can’t even go and look for a job. if i’m not here, it means that he won’t eat the whole day so even if someone asks me to fetch water for r20, i cannot do so.’ (participant 8, female caregiver of a person with a physical disability, community focus group 2) a particular case study discussed in a report on the rights of pwds from the umgungundlovu disability forum kwazulu-natal doh (2010) reveals a harrowing tale of a young 15-year-old girl with cerebral palsy. the girl was admitted to a durban hospital while in labour on the insistence of her neighbour. social work investigation revealed that this girl was neglected, was locked in a room daily and sexually abused (she was pregnant) and both her parents were alcoholics. of concern is that she had not been reported by the admitting hospital, despite the obvious signs of neglect and abuse a severely disabled underage girl admitted in a pregnant state in such a severe state of neglect (hair uncared for, tattered clothing, dirty and severe body odour). while this may reflect on an isolated extreme case, it suggests that some health professionals lacked the ability to recognise signs of neglect and the knowledge on the procedures to follow in the management of such a situation. while this was a blatant case of neglect that one would expect any caring person to respond to, it raises concerns about the ability of health professionals to respond to the more subtle signs of neglect as well as their ability to advocate for their patients without adequate training. it is imperative that ots be conscientised; to identify signs of abuse, neglect and marginalisation; and become familiar with processes to ensure that such persons are appropriately and correctly referred and removed from such abusive situations. from an occupational justice perspective, abuse, marginalisation and isolation of a pwd compromises their safety and security, self-respect, dignity and confidence (wilcock & hocking 2015). as such, it leads to greater marginalisation and isolation and seriously impacts on the mental health of the individual concerned. this in turn may compromise self-care and the motivation to engage in essential daily occupations or to seek employment. poverty is the underlying cause of these problems. poverty viewed from a capability perspective maintains that the defining feature of someone who is poor is that they have restricted and limited opportunities to pursue their well-being (united nations 2004). poverty results in low levels of capability or, as sen (1992:107) says, ‘the failure of basic capabilities to reach certain minimally acceptable levels’, which automatically restricts occupational potential. kronenburg and pollard (2005) suggest that ots need to negotiate with communities to obtain their consensus before such occupational injustices can be rectified and social inclusion of pwds can be facilitated. this would also entail negotiation with governmental and non-governmental organisations to ensure stakeholder buy-in in the community. the second core theme that emerged from the data was related to ot opportunities for intervention the first opportunity for intervention emerged from participants’ need for adequate and more appropriate rehabilitation services. pwds expressed a strong need to access more appropriate assistive devices such as wheelchairs more suited for use in the rural terrain. pwds also expressed a need for training of their caregivers in issues such as how to transfer the person from floor to wheelchair and back to improve the pwds ability to move around their home rather than being stuck on the floor. participants thought it beneficial to have access to an ot more regularly at a phc level. the pwds thought it ideal if the ot could do home visits, which would improve ots insight into the specific challenges facing the pwd as well as inform more contextually relevant application of intervention. visagie, scheffler and schneider (2013) identified gaps in the implementation of wheelchair policy and stated that the current application had a negative impact on users and service providers. who (2011) reiterates it is the responsibility of the healthcare system to ensure that there are effective measures in place to promote personal mobility for persons with disabilities, and to ensure availability and accessibility of appropriate assistive devices. in this regard, the authors agree that ot training be extended to improve the ability to prescribe appropriate assistive devices and that ots ensure that caregivers and pwds are taught about the use and care of their assistive devices. pwds said that they required assistance to acquire alternative methods to complete basic daily tasks. at the time of the study, some pwds had seen an ot once at the hospital or clinic but were not currently receiving any therapeutic interventions. the following quotes reveal some of their concerns: ‘i cannot bath myself properly but i try, when there is no-one in the house i have to cover myself with a blanket because i can’t dress myself.’ (participant 5, female pwd, community focus group 1) ‘he [pwd] needs to be shown how to crawl into the wheelchair so that when mother is gone to work, he can get some air.’ (participant 24, female caregiver of a person with a physical disability, community focus group 5) ‘the department of health could organise visits in the community with disabled people, to do regular check-ups and help us exercise because we spend so much time sleeping, maybe the therapists’ can help.’ (participant 22, female pwd, community focus group 4) ‘they [ot] can help because there are different ways of doing things. if they [ot] can tell us this, maybe we can get help. (participant 10, female pwd, community focus group 2) ‘one patient who was disabled with his hands he couldn’t dress himself, couldn’t even tie his shoe laces.’ (participant 29, female chw, semi-structured interview 1) figures 4 and 5 illustrate some of the challenges faced by pwd in performing their daily tasks. figure 4: this lady who had stroke battles to cook while on the floor in a rondawel. figure 5: a physically disabled man finding adapted methods to complete his laundry. concurrent with the concerns raised above was a need for greater intervention and assistance relating to the area of mental health, particularly for those people struggling with substance abuse. the need for education around mental health disorders was expressed by chws. the following comments illustrate these concerns: ‘he [mentally disabled person] needs that injection because he becomes normal with it and we become a family. the kids from our neighbours are scared to walk past our home because he calls them ‘tokiloshe’ [mythical evil character].’ (participant 2, female caregiver of a person with a mental health disorder, community focus group 1) ‘it’s just that there isn’t enough assistance for them; some of my clients haven’t been assisted because of my lack of education about mental health.’ (participant 29, female chw, semi-structured interview 1) a second opportunity for ot intervention that emerged from this theme was the need for support groups to educate about prevention, health promotion and income generation. as touched on in core theme 1, the lack of awareness of their rights and interventions to enhance their quality of life was evident in the feedback shared by the stakeholders. pwds thought support and/or counselling groups would provide opportunities for themselves and their caregivers to share stories, gain emotional support and learn from their peers. they believed that education groups with members of the local community could reduce the stigma about disability. they also requested skills training to assist them in income generation to contribute towards the financial needs of their families and households and to boost their disability grant. the following dialogues provide examples: ‘those who are living with the disabled should receive regular counselling because it is not easy for them to look after a sick person.’ (participant 7, female caregiver of a person with a physical disability, community focus group 2) ‘in other places, disabled people are taken care of because skilled people will come and teach them. the government helps them to use their skills and add to the grant they receive. there is no programme like that here.’ (participant 13, male pwd, community focus group 3) ‘some of those physically disabled can still think positive things. i remember one person who had an idea of making cupboards he met up with other people but he did not know how to do business plan or how to get money to start.’ (participant 12, female chw, chw focus group 1) health prevention and promotion are key pillars in the phc approach and feature as the central rationale for ots to establish support groups with pwds and their caregivers as well as conducting in-service training for chws to broaden their skills and knowledge base (dawad & jobson, 2011). the groups and the in-service training would provide a secondary prevention service aimed at creating an opportunity for pwds and their caregivers to socialise and gain emotional support through sharing their stories, learning from each other and being aware of their rights, which would build capacity, encourage participation and change pwds’ attitudes as supported in the research by rule (2013) and sherry (2014). peer support groups would further assist in improving assertiveness and activism as peer support from people with similar impairments were found to reduce negative thoughts, lack of expectations and feelings of helplessness (visagie & swartz 2016). ots involvement in the community would assist with identifying community-specific determinants of the burden of disease. ots need to partner with the community to develop and implement health promotion programmes to ensure sustainable culturally relevant intervention that addresses the identified problems or health behaviours (visagie & schneider 2014). from an occupational justice perspective, collocating with the community and pwds would create a better foundation for rights-driven advocacy initiatives to enhance resources, facilitate social inclusion in the community and create opportunities for pwds to improve their capacity to engage in corporate income generation initiatives. these findings concur with community development principles (rule et al., 2004; lorenzo 2003). ot graduates need to acquire skills in empowerment, negotiation, networking, community management, advocacy, intersectoral collaboration, identifying key people in the community who can influence decision-making positively thereby ensuring they are doing with and not doing for pwds (lorenzo 2003). this research suggests that there is a need for a shift towards more indirect occupational therapy and less direct (hands on) ot services in order for ots to have a positive impact on health and well-being outcomes for pwds. a third opportunity for intervention was for children with disabilities. despite a policy for inclusive education and training of children with disabilities in place, the implementation of this policy at the grassroots level is problematic. this has led to the human rights watch assertion that ‘south africa has failed to guarantee the right to education for many of the country’s children and young adults due to widespread discrimination against children with disabilities in enrollment decisions’ (human rights watch 2015:1). these findings were confirmed by our study. mothers of children with disabilities requested assistance with accessing schools for their children. they required information on admission and assessment procedures. children with physical disabilities were often denied access to mainstream schools because of stereotypical beliefs of the educators. additionally, mothers of children with disability expressed disillusionment at the lack of visible progress because of intervention. mothers were disillusioned at having spent money to access rehabilitation but that these investments did not make a difference in the level of their child’s functioning. the following statement acts as an example: ‘i think that if he can find a school it would be better because i can’t teach him most of the things that are taught in the disabled schools.’ (participant 33, female caregiver of a child with a physical disability, community semi-structured interview 5) ots as advocates need to speak up and negotiate for children with disabilities and their rights to be included in school. therapists need to collaborate with appropriate governmental and social welfare agencies to access the system available for children with disabilities. therapists could advocate with the department of education to ensure that children with disabilities are placed preferably in mainstream schools to promote their inclusion. therapists’ could provide a secondary prevention service through providing education to teachers for early identification of children with learning disabilities’ in schools and to facilitate better classroom accommodation of these children’s various disabilities. the human rights watch further found that: a lack of understanding of children’s disabilities and a lack of adequate teacher training means that many teachers and school officials do not know how to work with children with disabilities in classrooms. … in some cases, children suffered physical violence and neglect in schools. (human rights watch 2015:2) this substantiates the need for chw, caregiver and teacher training that was expressed in this study. from an occupational justice perspective, the obviously poor prospects for education for children with disabilities in these communities create a foundation for injustice, which thrives in the absence of educational grounding and social awareness. the exclusion of children with disabilities from schools and community activities further marginalises this vulnerable group and excludes them from being involved in income-generating activities thus fostering a lifetime of dependence and isolation conclusion this study was conducted to understand the particular context in which pwds lived in semi-rural and rural areas of kzn, the daily challenges they experience and to explore their perceptions of the services required from occupational therapists. the findings reveal the often severe degree to which some pwd and their caregivers live in unsafe and disabling environments preventing them from accessing their equal rights to participating in their daily activities such as self-care, work and social activities. findings suggest that therapists, health organisations, community stakeholders and professional bodies need to advocate for human resources to ensure sufficient posts for therapists and chws to ensure effective community rehabilitation at the phc level. much has been done around writing policies; however, implementing them to ensure more accessible and efficient rehabilitation and health promotion and prevention services may remain a utopian dream unless the government implements a long-term commitment to ensure a more effective system of procurement of assistive devices and removal of bottlenecks in services delivery, such as adequacy of posts for therapists at a phc level to enable therapists working in the community to realise their specific role here. logistic issues such as providing transport for ots to travel between home visits and clinics also needs to be addressed as well as review of policy regarding support for disabled to afford to access transport. ots need to become serious advocates for pwds around issues such as access to assistive devices and equal rights, especially as this relates to occupational justice. therapists also need to take into account the particular uniqueness of the rural community context in sa when facilitating/modifying the environment for the pwd, negotiating ideas to allow for better engagement with daily life tasks and methods to reduce marginalisation and promote both their dignity and greater inclusion of pwds in the their community. higher education programmes have to revise their curricula to ensure that ot graduates have the knowledge and skills necessary to achieve these ends. health education programmes should be cautious not to fall into a ‘one size fits all’ complaisance in which the emphasis is on a neutralised, generic curriculum that mostly accommodates a 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the understanding of disability rights, research topics and methodologies; the participation of people with disabilities in research; and the challenges and opportunities for using research to inform disability activism. conclusion: the conclusion highlights critical issues for future research in the region, and considers how a disability researcher database can be used as a tool for disability organisations to prioritise research that serves a disability rights agenda. introduction top ↑ the united nations convention on the rights of persons with disabilities (uncrpd), which has now been entered into international law, is a significant step towards realising the rights of people with disabilities (united nations [un] 2006). the convention seeks to address discrimination, change perceptions and combat stereotypes and prejudices. it also places an obligation on governments to ensure that they assist people with disabilities to achieve a state of equality with the citizenry without disabilities of each of their countries. article 31 of the convention notes the importance of states gathering research data that can inform policy and monitor progress towards the realisation of the rights of people with disabilities. people with disabilities need to be able to monitor and evaluate the impact of uncrpd on their lives, and involvement in research will give them the impetus to do so.this article reports on a research audit commissioned by the southern africa federation of the disabled (safod), an umbrella human rights organisation for people with disabilities, for the centre for rehabilitation studies (crs) at the university of stellenbosch to conduct. we begin with an analysis of the emancipatory research perspective of safod, before presenting the study and our conclusion and recommendations. emancipatory research top ↑ in 2006 safod initiated the safod research programme (srp) with the following aims:• to engage in partnerships with researchers in community-based and academic research in a spirit of co-operation and trust • to develop the capacity of people with disabilities as research partners • to use research to develop effective pro-poor policy and practice affecting people with disabilities in the region. the srp is concerned with the relationship between people with disabilities and researchers, with the aim that people with disabilities become partners in research that has a practical application in their lives. for this reason, the research audit was conducted within the framework of an emancipatory paradigm. emancipatory research (1) is based on a social model of disability, (2) engages people with disabilities in all stages of the process, and (3) has a transformative aim (barnes 2008). each of these issues will be discussed below with regard to the disability research audit. social model of disability the world report on disability (world health organization [who] 2011) outlines the development of a social model of disability, largely through the efforts of people with disabilities themselves, in reaction to the medicalisation of disability by health professionals. different ‘models’ of disability have been positioned as being dichotomous, thereby stifling dialogue about the relative impact of impairment and environment (grue 2011). the international classification of functioning, disability and health (icf) is presented in the world report on disability as a framework that can begin to bridge this gap, recognising both the nature of impairment and the importance of environmental factors. the environmental factors within the life-situation of a person with an impairment may either pose barriers or be a facilitator to participation (who 2002). within the uncrpd, such barriers are seen as a form of social injustice that states have an obligation to address (un 2006). for barnes (2008), an emancipatory research approach must at least include a focus on environmental barriers, and must prioritise the knowledge and experience of people with disabilities. the engagement of people with disabilities the involvement of people with disabilities in disability research can be seen as existing along a continuum, ranging from weak to strong engagement. at the weak end of the scale, involvement would be in the form of researchers engaging with people with disabilities merely as subjects of research or perhaps for consultation at an advanced stage of research. at the strong end of the scale, disabled people’s organisations (dpos) would be involved in setting the research agenda as well as in conducting, commissioning and disseminating the research. this was found to be true in a specific european context; amongst people with disabilities there was ‘in particular, a desire to be involved in shaping research agendas and defining research questions whilst valuing the methodological expertise and credibility of academic researchers’ (priestley, waddington & bessozi 2010:741). the ownership of research is a contested area. dpos have often complained that academic researchers use the products of their research for career advancement rather than for the emancipation of people with disabilities (garbutt & seymour 1998). transformative aim carmichael (2004) points out that research is a means to an end, not an end in itself. research must be communicated in such a way that it provides evidence to action, as opposed to being relegated to a dusty shelf. chalklen, seutloadi and sadek (2009) found that in the southern african context, disability research is not sufficiently solution focused and does not provide material for advocacy because it is pitched at a too generic level. according to these authors, statistics are not disaggregated in such a way as to make them usable for disability activists. these criticisms must be addressed if researchers are to contribute to the empowerment of people with disabilities in the manner envisaged in article 31 of the uncrpd.it is within this framework that the african network for evidence to action in disability (afrinead) has been developed. this network seeks to bridge the gap across a broad range of issues relevant to realising the rights of people with disabilities (mji et al. 2009). one of the key reasons for the development of afrinead was to investigate the quality and the suitability of existing disability research. according to afrinead, the challenge is clear: it is not just more research that is needed; it is ‘improved’ research and research that can be translated into policy and practice. translating research into evidence-based advocacy, policy, practice and products – particularly in the pan-african context – needs to be systematically addressed in a co-ordinated, coherent and consistent fashion. it is only when this happens that research evidence can act as a springboard for human rights instruments such as the uncrpd (mji et al. 2009). research method top ↑ data collection a questionnaire, summarised in table 1, was developed within the framework of an emancipatory research paradigm. table 1: summary of questionnaire. initially, the questionnaire was sent electronically to a group of researchers in the region who were well-known to safod, and who had participated or advised in the development of the srp. in addition, we engaged with a research capacity-building programme run by the department of psychology at the university of stellenbosch and safod. the programme was run over two years on a block-release system with the aim of: … build[ing] the institutional capacity of the organisation (safod) to design, drive and deliver their own research and development programme, focusing on disability issues with an inclusive poverty, emancipation, social exclusion and human rights focus. (university of stellenbosch 2007) trainees were people with disabilities recruited by dpos in the safod member countries. srp trainees gave their inputs to the questionnaire’s development and agreed to approach at least five researchers in their own countries to complete the questionnaire; they were paid for their work. they administered questionnaires electronically or in face-to-face interviews, depending on the availability of the respondents. all respondents provided contact details of other suitable respondents to create a snowball sampling effect. whilst some of these researchers were connected to safod, others were not. the respondents gave informed consent to their participation in the research audit. this process yielded a total of 87 questionnaires. data analysis a database was created to store researchers’ names, contact information, research methodologies and the topics of their research. data obtained from the questionnaire was grouped into response categories derived from the emancipatory paradigm (understanding of disability, engagement with people with disabilities and transformative aim). each researcher analysed a response category and then validated their findings with the other two researchers. the response categories were analysed as follows: • identifying critical or emerging themes in each category. • grouping together statements that supported the identified theme. • identifying the frequency of statements in each theme (counting the number of responses and converting it into percentages). the rationale for identifying the frequency of statements was to indicate the dominant trends within this very specific sample of respondents. whilst we make no claim as to the generalisability of these trends, we find it worthwhile commenting on their occurrence and considering future directions in the light of these findings. results top ↑ the researchers came from throughout the region; the highest number came from south africa, followed by zimbabwe and botswana, and the lowest number came from angola and namibia (see table 2). table 2: country of residence of researchers. most researchers (46%) were employed by universities or colleges (though not necessarily full-time). government was the next most common employer (14%), followed by non-governmental organisations (11%), and dpos and private consultancies (10% each). the remaining 9% were based in national research institutes. definitions or models of disability evidence from respondents (as illustrated in table 3) indicates that the definition of ‘disability’ is still a contested and complex issue. respondents had different understandings and orientations, at times moving between definitions. table 3: definitions of disability. the medical model was the most common definition used by researchers, but only marginally more common than the social model. many researchers adopted the icf definition, which incorporates elements of the medical and social models: ‘this is a complex question and i can’t answer it generically, but let’s say social model and icf’ (respondent 5, male, academic). involvement of people with disabilities the majority of respondents involved people with disabilities in some aspect of the research process, albeit at different levels and in varying roles and capacities (see table 4). table 4: involvement of people with disabilities in research. promotion of human rights there is a strong indication that researchers are attempting to promote the human rights of people with disabilities, as indicated in table 5. table 5: the understanding of human rights. challenges of using research evidence to action most respondents reported that there is limited capacity (both human and financial) for service providers to conduct research (see table 6). table 6: challenges of using research evidence to action. suggestions for using research evidence some respondents felt that there should be a clear definition and delineation of roles between researchers and activists. in this regard, researchers have as their main objective the generation of new knowledge, whilst dpos are advocates for their constituencies (see table 7). table 7: suggestions for using research evidence. policy development respondents saw a strong connection between evidence to action and influencing government policy (see table 8). table 8: respondents involved in government policy development. discussion top ↑ it appears that an interactional, human rights understanding of disability is gaining wider acceptance in the region. the uncrpd and the icf are the most prominent instruments underpinning disability research. although there are important differences between these two approaches that will not be discussed here, both are shifting the focus of research to a greater exploration of the environment in which disability occurs or is created. a more impairment-oriented, medical approach to disability is evident in countries that do not have access to the wide range of literature available in the english language (e.g. mozambique and angola).there was a call, specifically regarding the icf, to adopt a working definition of disability, so as to enable researchers to design studies that are comparable internationally; and in so doing, describe and monitor the implementation of the uncrpd. however, other researchers draw more directly on a framework of social justice and equalisation of opportunity. in addition, some researchers make a plea for recognising indigenous knowledge and african perspectives in disability research. it appears that it would be premature to end the debate at this point. amongst respondents there was a strong recognition of the need to involve people with disabilities at all levels of the research process. some were concerned about the call for full participation of people with disabilities in research without stipulating their role in research. in the african context, not all people with disabilities have had formal education, and are at a disadvantage with regard to technical research skills. whilst the development of these skills might take place for those people with disabilities expressly interested in their development, it was proposed that the aim for the disability movement overall should be to increase the capacity of people with disabilities to engage with researchers, to utilise research and to ask the right questions. furthermore, a deeper knowledge of the african context and indigenous knowledge systems could be integrated into the research process (owusu-ansah & mji 2013). an evidence to action approach is required to ensure that research benefits and makes a difference in the lives of people with disabilities. dissemination of research findings must be targeted to reach the intended people, building knowledge of the rights and responsibilities of people with disabilities (barnes 2008; un 2006). where there was limited disability research capacity (e.g. in namibia) it was noted that there was research in existence that could be relevant to supporting equal opportunities for people with disabilities, if the data were disaggregated for disability. thus, disability research should be undertaken with appropriate strategies and funding for dissemination and advocacy from the start, rather than seeing these as add-on, optional activities to be performed at the end of the research project. the process of translation of research evidence raises questions regarding the origin of research questions. lately, disability research participants have become interested in knowing from researchers how their research outcomes will be used to address the needs and priorities of people with disabilities. though a daunting prospect, this opens a new and exciting space for the inclusion of people with disabilities in the critical planning of research for better accountability and impact (priestley et al. 2010). at the core of these arguments is the need for equalisation of opportunities for people with disabilities. we believe that the discourse regarding research evidence should not be a fixed entity, but rather a fluid construct that is subject to the context and changing theoretical and socio-political understandings of disability in that area (owusu-ansah & mji 2013). we contend that it is not the methodology that is used that determines the effectiveness of research in transforming the lives of people with disabilities; rather, it is the consciousness of the central place of the struggles of people with disabilities and their families to realise the rights that have been outlined in the uncrpd. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions all authors, j.m. (university of cape town), g.m. (university of stellenbosch) and s.g. (university of stellenbosch), were involved in the conceptualisation, instrumentation and implementation of the research. data analysis and writing up of the research was also shared equally. references top ↑ barnes, c., 2008, ‘an ethical agenda in disability research: rhetoric or reality?’, in d.m. mertens & p.e. ginsberg (eds.), the handbook of social research ethics, pp. 458–473, sage, london.carmichael, a., 2004, ‘the social model, the emancipatory paradigm and user involvement’, in c. barnes & g. mercer (eds.), implementing the social model of disability: theory and research, pp. 191–207, the disability press, leeds. chalklen, s., seutloadi, k. & sadek, s., 2009, literature review, southern african federation of the disabled, bulawayo. garbutt, r. & seymour, j., 1998, ‘“do we all get a phd?” attempting emancipatory research relating to disability in an academic environment’, paper presented at the british sociological association conference, edinburgh, viewed 05 july 2013, from http://disability-studies.leeds.ac.uk/files/library/garbutt-do-we-all-get-a-phd-2-.pdf grue, j., 2011, ‘discourse analysis and disability: some topics and issues’, discourse & society 22, 532–546. http://dx.doi.org/10.1177/0957926511405572 mji, g., maclachlan, m., melling-williams, n. & gcaza, s., 2009, ‘realising the rights of disabled people in africa: an introduction to the special issue’, disability & rehabilitation 31(1), 1–6. http://dx.doi.org/10.1080/09638280802280288 owusu-ansah, f.e. & mji, g., 2013, ‘african indigenous knowledge and research’, african journal of disability 2, 5 pages. http://dx.doi.org/10.4102/ajod.v2i1.30 priestley, m., waddington, l. & bessozi, c., 2010, ‘towards an agenda for disability research in europe: learning from disabled people’s organisations’, disability & society 25, 731–746. http://dx.doi.org/10.1080/09687599.2010.505749 united nations (un), 2006, convention on the rights of persons with disabilities, united nations, new york. university of stellenbosch, 2007, department of psychology: community projects, viewed 08 july 2012, from http://sun025.sun.ac.za/portal/page/portal/arts/departments/psychology/community world health organization (who), 2002, towards a common language for functioning, disability and health icf, world health organization, geneva. world health organization (who), 2011, world report on disability, world health organization & world bank, geneva. abstract introduction methods results themes theme 1: awareness and experience of public health measures on covid-19 among people with disabilities theme 2: experience of othering and stigmatisation of people with disability during the covid-19 pandemic theme 3: experience of covid-19 symptoms and having covid-19 among people with disabilities discussion conclusion acknowledgements references about the author(s) queen e. seketi department of epidemiology and biostatistics, school of public health, university of zambia, lusaka, zambia j. anitha menon department of psychology, school of humanities and social sciences, university of zambia, lusaka, zambia school of liberal studies, university of petroleum and energy sciences, new delhi, india charles michelo global health institute, nkwazi research university, lusaka, zambia school of health sciences, chreso university, lusaka, zambia lena morgon banks international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom virginia bond social science unit, zambart, lusaka, zambia department of global health and development, faculty of public health and policy, london school of hygiene & tropical medicine, london, united kingdom citation seketi, q.e., menon, j.a., michelo, c., banks, l.m. & bond, v., 2024, ‘at risk but not adequately included: people with disabilities’ experience of covid-19 in zambia’, african journal of disability 13(0), a1448. https://doi.org/10.4102/ajod.v13i0.1448 original research at risk but not adequately included: people with disabilities’ experience of covid-19 in zambia queen e. seketi, j. anitha menon, charles michelo, lena morgon banks, virginia bond received: 25 apr. 2024; accepted: 31 aug. 2024; published: 15 nov. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: covid-19 had an impact on all sections of society, including people with disabilities. objectives: the authors aimed to explore the needs and experiences of people with disabilities in zambia during the covid-19 pandemic. method: in this hermeneutic phenomenological study, we used a semi-structured interview guide to collect data from a purposive and snowball sample of 40 people with disabilities and their caregivers. the participants were from 11 districts in 6 provinces in zambia. the in-depth interviews were done between july 2022 and november 2022. data were managed in nvivo and analysed using reflexive thematic analysis. results: the three themes included: (1) awareness and experience of public health measures on covid-19 among people with disabilities; (2) experience of othering and stigmatisation as people with disability during the covid-19 pandemic and (3) experience of covid-19 symptoms and having covid-19 among people with disabilities. conclusion: interventions were largely unresponsive to the needs of people with disabilities, exacerbating the risk of exposure to infection. in future, adaptations like emergency risk communication in braille, audio and sign language interpretation in adapted communication formats should be made. further studies are needed to quantify the gaps in access to health, explore policies and strategies to improve health outcomes for people with disabilities in lmics like zambia. contribution: the findings may contribute to the development and enhancement of policies and interventions responsive to the needs of people with disabilities in future pandemics in the zambian context. keywords: disability; covid-19; experiences; knowledge; communication; risk; health seeking behaviour; social determinants; disability inclusion; health inequities. introduction covid-19 affected everyone (finn & andrew 2020), including people with disabilities. it is a respiratory infection that was declared as a pandemic by the world health organization (who) in march 2020 (chipimo et al. 2020). at its height, the pandemic was the leading cause of morbidity and mortality in the adult population worldwide (fan et al. 2021). people with disabilities are among the largest group of people marginalised during the covid-19 pandemic (mckinney, mckinney & swartz 2021), and there was compelling evidence on their increased morbidity and mortality in developed countries like the united kingdom (bosworth et al. 2021) and the united states of america (landes et al. 2020). on the international development agenda, exclusion of people with disabilities is a major concern because of its association with multidimensional poverty which limits participation in mainstream life areas (mitra, posarac & vick 2013). countries are mandated to have disability-inclusive measures to address development concerns like inequities in access to health, education attainment, employment population ratio and food security (mitra et al. 2023). for example, the zambian government, in collaboration with partners, implements social protection programmes that strive to target people with disabilities among other marginalised populations (mcdss 2018). additionally, zambia’s legislative measures aim to domesticate the united nations convention on the rights of persons with disability (uncrpd). in its preamble, the uncrpd states that disability is an evolving concept and that disability results from the interaction between people with impairments and attitudinal and environmental barriers, which hinders their full and effective participation in society on an equal basis with others (lawson 2006). while the who’s international classification of functioning, disability and health (icf) refers to disability as an umbrella term for impairments, activity limitations and participation restrictions. it denotes the negative aspects of the interaction between an individual with a health condition and that individual’s contextual factors (personal and environmental). globally, at least 1.3 billion individuals or 16% of the population are people with disabilities (world health organization [who] 2021). in zambia, about 1.5 million people or 7.7% of the population are people with disabilities (mcdss 2018). consequently, it is important to place greater emphasis on ensuring the inclusion of people with disabilities in various areas and development activities (zambia agency for persons with disabilities 2021). the first reported case of covid-19 in zambia was in march 2020, with the first fatality following the same year (chipimo et al. 2020). the who declared covid-19 as a public health emergency on 11 march 2020 (who 2020); in turn, zambia declared covid-19 as a national emergency as of 19 march 2020. the ministry of health initiated covid-19 responses immediately (haider et al. 2020). a variety of public health and social measures were implemented in zambia to stop the spread of covid-19. these interventions included test, trace and treat, movement restrictions, and partial or complete closure of schools (ministry of general education zambia 2020) and businesses. additionally, quarantine measures were enforced in specific districts in the first wave, and international travel restrictions were put in place. the restrictions were varied as the pandemic unfolded (chipimo et al. 2020). communication on the public health crisis was made through public and private media platforms, social media and ministry of health messages to mobile numbers (risk communication and community engagement [rcce] subcommittee 2020). guidelines focussed on ‘the five golden rules’, which were important behavioural interventions that individuals could follow, and included frequent handwashing with soap and water or the use of an alcohol-based hand sanitizer, keeping a safe distance from other people, using face masks, coughing in elbows, seeking early medical assistance and later (from april 2021 onwards) receiving the covid-19 vaccine. by august 2023, there have been 349 287 reported cases of covid-19 and 4069 deaths in zambia (mathieu et al. 2020). however, people with disabilities could face additional barriers to following preventative measures, which may increase their risk of infection, and an even higher risk of serious illness and mortality if they receive suboptimal care and have underlying conditions (who 2020). for example, a study from the united states showed that 22% of people with disabilities found it difficult to obtain information about covid-19 due in part to the lack of adapted communication (james et al. 2022), and a scoping review of 30 studies in lowand middle-income countries (lmics) found reduced access to general healthcare (rohwerder et al. 2022). although people with disabilities were at risk of covid-19 because of their narrower margin of health (shakespeare, ndagire & seketi 2021), there are also underlying systematic barriers to accessing healthcare in general (pincock et al. 2022), such as physical accessibility, communication barriers (rohwerder et al. 2022), infrastructure accessibility, medical equipment, caregiver support and stigma and discrimination (hashemi et al. 2022; neille & penn 2015). in crisis settings, the inequities faced by people with disabilities are exacerbated because of their exclusion from preparedness, response and recovery measures (world bank group & gfdrr 2017). this article provides evidence for how covid-19 public health prevention measures were experienced among people with disabilities in zambia. in-depth interviews were used to explore their knowledge of covid-19 and experiences following preventive measures in people with disabilities and/or their caregivers in 5 selected provinces (11 districts) of zambia. it may carry implications for how pandemics can deepen inequities and how pandemic preparedness strategies should be adapted to be inclusive of people with disability. methods study design we used a hermeneutic phenomenological study (gonzález-díaz et al. 2021) to explore experiences of people with disability and the biopsychosocial theory underpinning the icf (who 2001). these were used in this qualitative study because we wanted to understand the lived experiences of people with disabilities during the covid-19 pandemic, and the role of different personal and contextual factors in shaping this experience, from their own perspectives. interviews used semi-structured, in-depth interview guides. study setting, site and population this study was undertaken during the different covid-19 waves in 11 urban and rural districts across five provinces in zambia. these included lusaka, chongwe, kafue (lusaka province); mkushi, mumbwa, kabwe (central province); mongu (western province); ndola and chingola (copperbelt province); livingstone and monze (southern province). the study population, included in this article, were people with disabilities and their caregivers. participant selection we used purposive sampling with maximum variation (patton 2015) to select 40 people with different types of disability, aged 7 years and above (7 is the age at which children are either in reception class or grade 1 in zambia); gender; level of support needed for daily living and geographical spread. these were drawn from lists provided by organisations of people with disabilities and non-governmental organisations focussed on disability registered with zambia agency for persons with disabilities. proxies were persons directly involved in the care of young children (7–11 years) and people living with severe forms of impairments affecting communication; persons constantly present in the day-to-day lives of participants like parents and guardians and significantly involved in managing the person’s covid-19 risk. all efforts were made to speak to the person living with a disability and three proxy interviews were the last resort. refer to table 1 in the findings section for details on characteristics of participants. table 1: social demographic characteristics of people with disabilities (n = 40). data collection data collection was done through in-depth interviews between july 2022 and november 2022. earlier, q.e.s. (a female phd student) received research training in qualitative research and disability-inclusive research practices from the university of ghana by lmb (secondary supervisor) and a team of global health and disability researchers from the london school of hygiene and tropical medicine (lshtm) to sharpen her skills to conduct this study. interviews were conducted in english, nyanja, tonga and sign language. the interview guide was pilot-tested, and the findings of that test were used to refine the tool. all interviews were audio-recorded and transcribed. the interview transcripts were kept on a password-protected computer in a safe place. interviews were anonymised by the removal of personal identification features like names and were replaced with in-depth interview numbers. the data were checked for accuracy and consistency by q.e.s. and the research assistants. l.m.b. and v.b. (supervisors) also conducted quality checks of the research. we interviewed a maximum of eight participants per impairment category hearing, (speech, vision, physical developmental and intellectual impairment) to cater for data saturation. these were recruited until no new relevant knowledge was forthcoming. see table 1 for the profile of participants. the face-to-face interviews were done at the preferred, quiet venue of participants, for example, homes, at their office. data analysis we employed reflexive thematic analysis, following braun and clark’s six-phase approach for coding and theme development (braun & clarke 2006), which aligns with the reflexive requirements of phenomenological analysis. ethical considerations regarding authority to conduct research, ethical clearance was obtained from the london school of hygiene and tropical medicine (reference: 22616) and the university of zambia biomedical research ethics committee, clearance number 1269-2020 and 3324-2022. informed consent to participate was obtained directly from all participants above the age of 18 years in zambia. for children below the age of 18 years and for adults who lacked the capacity to consent on their own (e.g. severe cognitive impairments), caregivers provided consent. in these cases, attempts were made to still seek input from participants directly where possible and relevant as in the cases of children aged 10 years and above. proxy interviews were still needed for younger children and adults who had severe difficulties communicating with available support. using simplified information sheets, assent from the participants aged 10–18 years was sought, following the same protocols for consent such as oral or emailed for phone interviews and written if the interview was conducted in person. adaptations were put in place to support the participation of people with different impairments. for example, people with profound hearing impairment could participate using sign language interpretation and through written responses over email and/or whatsapp. simplified interview schedules were used for people with cognitive and/or intellectual impairments and younger children. job access with speech (jaws), a screen reader, was installed on q.e.s.’s computer. this was available to read information sheets and consent forms by participants with visual impairments if they wished. personal assistants, although nonparticipants, were also allowed during interview. some participants with visual impairments opted to read information sheets from their own smartphones and laptops. referral services were identified and available if participants reported severe distress. team reflexivity a female phd student, q.e.s., led this study and has a background in development studies and public health, with more than 16 years of experience in the coordination of multisectoral response to human immunodeficiency virus (hiv) at the district level. in this study, q.e.s. took an emic position. ontologically, the emic account refers to an insider’s perspective (markee 2013). this is because q.e.s. is a zambian woman with a physical disability who lived through the covid-19 pandemic in lusaka. through face-to-face meetings, q.e.s. and v.b. reflected on what went well, what did not go well and how we could do it better. q.e.s.’s own assumptions of things being out there waiting to be discovered changed to a realisation that knowledge is a co-creation with participants, needing patience and engagement in cycles of reading, writing and re-writing. in this study, team members were focussed on a continuous effort to co-create and contribute to increased knowledge on disability inclusion during crises in the global south. hence, a multidisciplinary team brought different expertise – for instance, vb is a qualitative expert who has worked in zambia for 30+ years and lmb is a uk-based researcher who has 10+ years of experience in disability research globally. cm is a clinician and public health specialist and ajm is a social scientist with over 20 years of experience. the research team had no prior relationship with participants. q.e.s. took time to share the research objectives and ensure that they knew about the interviewer. c.k. (public health undergraduate), m.m. (experienced in qualitative research) and v.k. (public relations undergraduate) helped to set up interviews with participants and recordings. when q.e.s. travelled out of the district, she was accompanied by a caregiver whose role was to help her navigate inaccessible physical environment and was not part of the interview session. results characteristics of the sample participants were nearly equally divided by gender and ranged in age from 10 to 74 years (mean age being 36 years; table 1). most (45%; 18/40) participants resided in peri-urban areas, 37.5% (15/40) in rural locations, and a few (17.5%; 7/40) in urban areas. additionally, 98% (39/40) were christians, while 2% (1/40) were muslims. people with physical impairments were the largest share by disability type, although there was good representation across types. to frame the analysis, it is important to note that most participants were living in difficult socioeconomic situations. most participants reported that their households often had to make tough economic choices between buying the basics (e.g. food, utilities) and purchasing airtime, internet bundles and television subscriptions to stay abreast of covid-19; this task became difficult during the pandemic. while peri-urban and urban residents had electricity connections, they experienced load shedding and high electricity tariffs. in rural areas, access to adequate water and sanitation was limited. most participants were not receiving social welfare benefits from government because the criteria were to include people with ‘severe’ impairments, and this tends to leave out people with mild and moderate disabilities who may need welfare support. however, many received material support from religious organisations and organisations of people with disabilities. most of the adult participants were unemployed or in informal work either in self-employment or part of cooperatives. themes this section presents findings on the in-depth interviews conducted with people with disabilities. table 2 summarises the themes and subthemes. table 2: key themes and subthemes. theme 1: awareness and experience of public health measures on covid-19 among people with disabilities subtheme 1.1: awareness of covid-19 and accompanying public health measures among people with disabilities by november 2022, most people with disabilities knew about covid-19 broadly as a disease and could explain some of its basic features. this awareness was demonstrated in knowledge about origin and symptoms (including most commonly coughing and sneezing identified by most respondents), as well as transmission modes. regarding awareness of the methods of preventing covid-19, a few participants with hearing and speech impairments and most participants with physical, visual and other impairments not affecting communication also knew the methods of preventing covid-19, under the buzzword of ‘five golden rules’. additionally, when covid-19 vaccines were rolled out in zambia, most respondents with disabilities were aware of covid-19 vaccines as a prevention measure, being available in the country: ‘yes, i know about this terrible disease, it has taken a lot of lives around the world.’ (idi 34, male, 58, physical and mild psychosocial impairment) ‘through wearing a mask, handwashing or sanitising, coughing in elbow, avoiding crowded places and doing social distance.’ (idi 09, male, 25, hearing impaired) ‘i heard about corona virus and people [ministry of health officials] they were going around asking us if we have already done the ‘inyeleti’ [taken the covid-19 jab/injection].’ (idi 19, female, 28, epilepsy) subtheme 1.2: challenges of access to covid-19 information challenges with affordability as mentioned earlier, the majority of participants were living in challenging financial circumstances. young people with disabilities expressed difficulty in getting funds for internet access because the costs exceeded their ‘pocket money’. they also faced limited opportunities to secure part-time jobs to earn their own income, often relying on male relatives for financial support. here we found intersections (de beco 2020) between gender, poverty and disability regarding information accessibility. for instance, a 23-year-old female student participant, who lived in a peri-urban area of a predominantly rural town, with a physical disability indicated: ‘ifwe yalikaba. [life is hard or things are tough]. right now, i need bundles to do my assignments, connect with my friends, and learn one or two things about corona. for people with disabilities, it is hard to demand for more pocket money. my sister and i are being kept by an uncle from mum’s side. nabena kuwayawayafye [he is not a rich man].’ (idi 36, female, 23, physical impairment) the ministry of health often disseminated standard text messages with up-to-date information on covid-19 through phones. additionally, some people, such as people with vision impairment, required phones with accessibility features, which are often smartphones. however, most participants, particularly those in rural areas, did not own smartphones. a grade 6 boy with vision impairment said: ‘i don’t have a smartphone.’ (idi 15, male, 15, vision impairment) information accessibility information accessibility for people with hearing impairments: some people with disabilities said covid-19 health education messaging did not consider the accessibility needs of people with disabilities. this was particularly evident among a few participants with hearing impairments who had low levels of education, no formal sign language instruction and living in a rural area who knew little or nothing at all about covid-19 as a result. a young man with a hearing impairment who knew sign language also lamented about inaccessible information on covid-19 among his friends with hearing impairments because of not knowing formal sign language. he suggested a solution for this: ‘bafunika kupunzhila sign language. ba usinga sign language ya kumunzhi [they need to learn formal sign language. they use home signs from the village].’ (idi 09, male, 25, hearing impaired) people with hearing impairment had a history of interactions with health and health promotion services which were largely not respectful of the deaf culture and did not provide sign language interpretation, leading to doubts whether covid-19 information they received was up-to-date and trustworthy. with so much information and misinformation (infodemic) during the covid-19 pandemic, participants felt the need to be cautious and expressed the need to have adequate, truthful information on the pandemic, delivered by staff accredited through organisations of people with disabilities and professional bodies, who knew both english and zambian sign language. for instance, a woman who lived in an unplanned settlement with her brother and worked as a volunteer at a local health centre in the city said: ‘i am concerned that the information i have about covid-19 is not enough. as deaf people we are sidelined [when sign language interpretation is not provided] because messages on the phone, tv updates and social media are the ways in which we get information and we take that as the truth, so you [herself] can worry. the ministry of health can get good interpreters from [name of organisation] not just anyone to do sign, because the ones i am telling you follow code of ethics [sign language interpretations’ professional code of ethics] and are properly trained …’ (idi 03, female, 49, hearing impairment) information accessibility for people with visual impairments: most adult participants with visual impairments said although they could listen to covid-19 messages on the radio, some stated they would prefer braille. however, the covid-19 health education fliers distributed were not produced in braille. a few people with visual impairments said technological applications like screen reading software were available on their laptop, and one participant had a smartphone with accessibility features. however, they still experienced accessibility barriers on websites and digital content if these sites were not adapted to be screen reader compatible. to highlight this, a middle-aged male lecturer at a college with visual impairment observed: ‘many materials in braille were needed. there is specific software [text to speech] like the one i have on my laptop to help navigate. but my experience is that they are not easy to use.’ (idi 01, male, 52, visual impairment) information accessibility for people with intellectual/cognitive impairments: simplified information from the official emergency risk communication committee was aimed to help children understand preventative measures, which could be useful for children and adults with intellectual impairments. although jingles were included in televised and radio programmes, most parents of children and adults with severe intellectual impairments doubted the ability of the person under their care, to get this information in the generic format. to highlight this, one caregiver of a young man who had a severe intellectual disability felt he was unable to comprehend, a view also reiterated by other parents and caregivers of children and adults with severe intellectual disabilities: ‘no, i do not think that he can understand anything on his own.’ (idi 18, father, 60, of 25 year old male with multiple impairments) ‘no, she doesn’t talk, and l am not sure she is able to understand, although she hears when people are speaking. she also watches tv. it is ok for me.’ (idi 07, mother, 53, of 10 year old female with multiple impairments) additionally, although they were required to safeguard their children and young adults with severe impairments from getting covid-19 infection, there were little or no guidelines adapted for the carers in the early part of the covid-19 pandemic. the absence of adapted guidelines for use was experienced as disempowering, given that covid-19 was a new disease. although guidelines were developed later through the association of parents with disabilities, they were not widely circulated to end users: ‘the association [parents of persons with disabilities] did not have guidelines at first. we didn’t know what do to. later, guidelines on what to were developed but not everyone had them.’ (idi 07, female, 53, of 10 year old female with multiple impairment) subtheme 1.3: practicalities of following the five golden rules on covid-19 prevention negative covid-19 prevention experience with social and/or physical distancing delays in meeting personal care needs: often, people with severe impairments and people with multiple impairments in the study depend on carers for conducting activities of daily living. in many instances, navigating the covid-19 prevention requirements, particularly for physical distancing, led to strained relationships. people with disabilities said some carers took the golden rules seriously for themselves and had no other information on how to execute care activities safely, leading to delays in receiving personal care. to illustrate this, a young woman with cerebral palsy noted: ‘the challenge with covid keeping a metre apart was that people with disabilities always needed a helping hand. like in my case … and at times because some people would want to follow those rules critically before doing anything or touching their relatives, so it was a very big challenge for a person with a disability to get help on time.’ (idi 22, female, 23, cerebral palsy and physical disability) navigating physically inaccessible public spaces and public transport: many participants in urban and peri-urban locations found the built environment a hindrance to keeping physical distancing. while there were visible indicators on where to stand in particular malls, banks and physical marks for maintaining a certain distance in church pews and clinic queues, these were typically not tactile enough for people with visual impairments. most of our participants with visual impairments do not use walking canes to aid in their independent navigation. because they require guides and were unable to determine if those around them were adhering to the safety protocols, people with visual impairments were concerned about potential for covid-19 infection, doubting the extent to which they could rely on others to guide them in public areas and on buses but often had to be helped. to highlight these challenges, two adults with visual impairments said: ‘i do not have a [walking] cane … i always need a helping hand because there are stones. when i am away from my family, strangers help me to get on and off the bus. now this time [during the pandemic] people were for the idea of social distancing to prevent the spreading of covid-19.’ (idi01, male, 52, visual impairment) ‘we were supposed to sit one meter away, when you want to sit on a bench or even on the bus. but for us blind people this was a challenge because we could not be one meter apart when you need help for [keeping] the same distance.’ (idi 27, female, 49, visual disability) barriers to adoption of mask wearing a few people with visual impairments did not adopt mask wearing, because of physical discomfort or they had difficulty breathing: ‘i have failed to get used to wearing of masks as it makes me very uncomfortable. if there was a way to have them develop those masks which can cover the whole face [face shield], i think it would be better because it would leave enough space for air unlike the ordinary ones which block room for air.’ (idi 01, male, 52, visual impairment) in some parts of the world, opaque face masks were aimed at making it easier for people who do lip reading to communicate. however, only cloth and medical face masks were often distributed, by both the public and private sectors, during covid-19 prevention interventions in zambia. some participants with hearing impairments who require lip reading to understand what is being communicated could not always wear these cloth and medical face masks. they took risks in public places like schools, hospitals and marketplaces by uncovering their faces. sometimes, they left their mask hanging below the chin. most of these participants said they abandoned wearing a mask altogether during a conversation. to highlight this, a male teacher with hearing impairment said: ‘i have no problem wearing a facemask. every time i go out [in public spaces], i wear a mask. but when i am in class with my students, or a fellow deaf person at church or the market, i take it off because first of all they will not see my face. that is how we communicate. we face each other.’ (idi 23, male, 36, hearing impairment) handwashing and sanitation inaccessible wash infrastructure and technology: during the pandemic, there was an attempt to mount more handwashing facilities in public spaces countrywide. although most people with disabilities said handwashing was a preferred covid-19 prevention measure, because of its potential to prevent other diseases as well, only a few said it was an easy measure to follow. across impairments and geographical location, most participants observed that like pre-pandemic times, the foot pedals were difficult to use and community washing stations were unreachable for wheelchair users, and a view was expressed by a young woman: ‘i was pressed so i called someone to help me. the person guarding the hospital first asked mum to sanitise herself before touching me. after that i had to wash my hands so that there was no barrier when getting help. i couldn’t even reach the wash basin from my wheelchair.’ (idi 22, female, 23, cerebral palsy and physical disability) most participants were not able to wash their hands as often as possible during the covid-19 pandemic, and owing to cost, some washed their hands with water only. ‘it is just that the cost of soap, hand sanitizer and other alternative to such are costly these days. when there is no soap at home, there is nothing i can do. i wash hands with water that’s all.’ (idi 33, male, 31, visual impairment) disability and gender roles in household water management: prior to the pandemic, climate change issues were said to be causing scarcity of freshwater resources. when the pandemic struck, household members were required to observe frequent hand hygiene, increasing water requirements. however, these demands also placed a huge burden on women and girls because of their domestic roles. for instance, women who resided in rural areas had the responsibility to ensure there was water at home, regardless of their own ability to carry water containers or buckets from water sources like shallow wells and the river. if the water point was near their homes in urban and peri-urban locations, females with hearing and intellectual impairment still had the responsibility of topping up water in containers for members of the household because of erratic supply. to highlight these water challenges, a woman with visual impairment from a rural town in a planned compound with piped water noted: ‘we have a big problem with the water. there is water rationing. we just have water on some days of the week. we draw water in our buckets and store for the period we will not have the running water. for emergencies like cooking beans, we ask from our people [neighbours] who have a shallow well.’ (idi 29, female, 48, visual impairment) past negative experiences with vaccines vaccines were a later addition to the guidelines on covid-19 prevention. vaccine acceptability and adoption by study participants varied. among a few adult participants, who had some level of education, this intervention was a welcome measure. however, a common pattern was not getting much information about the side effects. a man with visual impairment explained his experience: ‘… one thing they did not explain the side effects associated with vaccination. after the vaccine, i was in pain because the site of injection was sore. i felt ill but i did not return to the clinic.’ (idi 01, male, 52, visual impairment) others were reluctant to vaccinate because of past negative experiences, such as attributing disability causation to past vaccination experience and coercion from significant others. for instance, a woman attributed the onset of hip joint problems to a vaccine injection during her childhood observed: ‘i followed all the golden rules except for one, vaccination. i have phobia of injections. when i was young, the [health worker type] gave me a vaccine injection on my thigh … from then on, i became unwell, and this led to leg problems, especially around the hip; niyopa nyeleti [i am afraid of being injected]. when vaccines came, my sister tricked me. she said there was an event taking place in town and only to find that they were giving jabs [covid-19 vaccines]. i got the first vaccination. the first and second were ok but the last one i got in june was painful.’ (idi 28, female, 53, physical impairment) theme 2: experience of othering and stigmatisation of people with disability during the covid-19 pandemic subtheme 2.1: disability, covid-19 stigmatisation people with disabilities and their families reported that they had already experienced disability-related stigmatisation prior to covid-19. contracting covid-19 or being in a household with someone who had covid-19 could then lead to additional stigma and exclusion. some participants reported being shunned by neighbours in these circumstances. one participant was accused of using covid-19 as a way to ‘get rid of their problem’ namely a child with severe impairments. she said: ‘it [covid-19] has made us think a lot. my son tested positive for corona [covid-19]. other people in the community were afraid of him but i wasn’t. he is now fine… my greatest worry was that i could get infected with corona [covid-19] and pass it to my girl with impairments. that would have really been hard. people in the village already blame me for ‘contributing to my daughter having a severe a disability’ because of the [traditional] belief that i committed incest. she needs my care and now they avoid us, saying with covid-19 in my house, i have a wicked plan to permanently solve my problem if she dies and they want no hand in it.’ (idi 07, female, 53, of 10 year old female with multiple impairments) subtheme 2.2: being labelled as ‘the one spreading covid-19’ in ordinary times, most adults with disabilities experienced intersecting identities that created spaces of marginalisation and stigmatisation, compared to people without disabilities (yoshida et al. 2014). participants said covid-19 made things worse because of being identified as at higher risk of covid-19 infection as a person with disability. for instance, a man with post-polio paralysis often needed healthcare for allergies even before the pandemic. he was perceived as higher risk because he went back and forth to health centres. after the pandemic, he experienced severe symptoms of covid-19 for which he had to seek healthcare at a local clinic, like his allergies. although he did not test positive for covid-19, he observed that: ‘stigma pa balema tayakapwe [stigma against people with disabilities will never end], you know very well that people call us names, balya abekala pacijinga [the one who sits on a wheeler]. i am also a poor man, as you can see i live in a one room with my second wife and people thought i would not marry gain … now with covid-19, i fear to sneeze and cough in public because they say you are the ones brining corona [covid-19] because of the way i move to the clinic to get help.’ (idi 35, male, 56, physical impairment) most young people with severe mobility restrictions and all participants with multiple impairments needed physical care from others to function in their daily lives and this involved unavoidable close contact with other human beings. in this study, most of the young people with disabilities had no designated carer and household members took turns to provide such care. a few young people with disability also experienced negative judgements and discriminatory attitudes from other household members because they were seen to be typical of persons likely to spread covid-19. for instance, a young woman participant said: ‘before covid-19 came, people [other members of the household] could at least help us move. but after covid-19, people were afraid to move me from the floor to the bed and from the wheelchair because they thought we [herself] could give then covid-19 because a lot of people come close to us.’ (idi 20, female, 17, physical impairment) subtheme 2.3: neglect, driving covid-19 risk participants who became disabled as adults rejected the risk designation based on their personal experience, claiming it put them in a marginalised group deserving of pity. instead, they emphasised external factors that included government indifference and imposed participation restrictions on people with disabilities, before and during the covid-19 pandemic. however, they were afraid to voice their concern. as an illustration, a man physically impaired by a traffic accident who worked for an international organisation said: ‘yes, we were at risk of covid-19 infection although we were neglected but still, we cannot say that to the government. we only complain in private or when we are with people whom we trust that they cannot report us [to the authorities]. yes, i feel at risk of getting corona [covid-19].’ (idi 08, male, 53, physical impairment) theme 3: experience of covid-19 symptoms and having covid-19 among people with disabilities subtheme 3.1: rationing of test kits and access to testing for covid-19 among covid-19 guidelines was instruction to seek healthcare if experiencing symptoms of covid-19, and testing services were typically provided at health centres around the country. in some instances, younger participants did not access testing services because health centres had few testing resources and were reserving them for severe cases. for instance, a few participants said they were not tested for covid-19 when they presented to the clinic with symptoms of covid-19: ‘i drunk warm water and rushed to the clinic when i had strong [severe] symptoms of covid-19. but i was not tested for covid-19. the [health worker] gave me panadol©.’ (idi 12, female, 21, mild intellectual impairment and physical impairment) subtheme 3.2: experiences with home management of covid-19 infection besides ensuring their own safety, a few people with disabilities had responsibilities as carers of their own adult children with confirmed covid-19, placed under home management. their experiences as contacts of confirmed home management cases of covid-19 were stressful. as a man from a rural town reflected on his experiences, all members of his household had severe symptoms of covid, although he said only his daughter tested positive for covid-19: ‘we were all sick at home and had to be in bedrooms. it was emotionally stressing because you have to see to it that, that person [daughter] does not die. i was scared to check on her but with the help of friends, over the phone, they instructed us what to do. this was help because help from the health care workers [from the hospital] was not coming as per expectation. we expected a lot of counselling.’ (idi 08, male, 53, physical impairment) apart from the occasional phone call, participants said there was little support for most cases of covid-19 placed under home management, and they often had to buy medications and use alternative remedies. most often cited were steaming with eucalyptus leaves, drinking ginger and lemon tea. subtheme 3.3: navigating unresponsive healthcare different influences shaped people with disabilities’ interaction with the health system. these cases highlight gaps between what was also expected and what services they received, given their health needs as people with disabilities. six out of the 40 participants tested positive for covid-19. most of them said it was easy to go to the clinic. for those who required hospitalisation, they reported poor experiences such as lack of prompt attention and inaccessible health services, bringing to the fore how the health system during crisis times provides inappropriate services to persons with disabilities. participants said services were unresponsive to their treatment needs. table 3 further highlights these experiences of having to navigate unresponsive healthcare for people with disabilities during the pandemic. table 3: illustration on navigating unresponsive healthcare. discussion the experience of people with disabilities was that they were aware of the covid-19 pandemic as a disease and its associated prevention measures. however, this study also established that people with disabilities faced barriers of access to health information. using the guidelines themselves presented issues without reasonable accommodations – a missed opportunity to meet their needs. people with disabilities continued to experience othering and stigmatisation during the covid-19 pandemic and this led to, for instance, being portrayed as the ones spreading covid-19. the study also found that healthcare needs for covid-19-related care were not adequately met. our findings situate how the covid-19 measures were experienced by people with disabilities. the measures were experienced as barriers in the environment, which often interacted with people’s impairments and health conditions, restricted further their participation in preventative, treatment and care situations, and raised risks of infection and severe disease for people with disabilities. we now discuss these observations, largely focussing on the disabling environments and interaction of contextual factors in these pandemic experiences, which were, largely, exclusion experiences. this discussion is structured around the three themes that arose from the analysis of in-depth interviews of people with disabilities from districts, and the meanings the participants assigned to these experiences. firstly, this study found people with disabilities generally had adequate awareness of covid-19, although many still reported challenges with getting up-to-date information in accessible formats. this is similar to another research in south africa (wickenden et al. 2022). among key gaps were inadequate adaptions of health information dissemination for impairment types such as people with vision and hearing impairments, and for people with intellectual impairments. this barrier has been reported in other pandemics such as sars and ebola (kett et al. 2021) and crises such as flooding (bailie et al. 2022) in which these adaptations were not made. the goal of risk communication is to ensure that people targeted understand risk and adopt behaviours to reduce the threat. to be of value, risk communication, including health information, must be accessible to all people, including people with disabilities (world bank group & gfdrr 2017). duty bearers, especially governments, are responsible for ensuring accessible information, as per the united nations convention on the rights of people with disabilities’ requirements on accessibility under article 9 (united nations 2007). secondly, people with disabilities were expected to follow largely generic prevention rules (the ‘five golden rules’). these rules were not adapted to individual circumstances such as for people who require caregiving support and could not social distance; opaque masks were not introduced for people who require lip reading and did not factor in poverty contexts and in an unaccommodating environment. for example, some people with disabilities were unable to undertake frequent handwashing because of inaccessible wash and because soap and other materials were expensive. this finding mirrored other research from before covid-19 (wilbur et al. 2021), indicating inaccessible wash has been a longstanding problem that was exacerbated by the additional sanitation needs during the pandemic. using guidelines on covid-19 was difficult for people with disabilities because the covid-19 measures required additional resources that were not always within reach. for instance, actual unmet material and financial needs were behind inability to afford or access basics such as electricity, phones, data bundles and facemasks and hand sanitizers. these barriers, around poverty and material deprivation, which negatively impact lived experiences of people with disabilities, were well researched before the covid-19 pandemic (trani & mitchel 2012) and through the zambia national disability survey, which showed extreme poverty levels among people with disabilities (mcdss 2018). experiences accessing care for covid-19 symptoms and infection also demonstrated health sector challenges, including long wait times, supply shortages and challenges in meeting the needs of individuals with disabilities. examples of the latter included lack of training of healthcare workers. many struggled to get a proper diagnosis because of shortages in test kits, which has been reported also for the general population in lmics because of inequities in global supply chains (boro & stoll 2022). however, for a population that experiences a narrower margin of health (shakespeare & officer 2011), studies found the health outcomes of covid-19 infection are worse compared to people without disabilities (bosworth et al. 2021) but exact statistics remain largely unknown in countries like zambia. this research carries several implications for policy and practice. government should ensure that multisectoral response measures to future pandemics and other crises are disability inclusive (who 2020). examples of possible interventions include universal designs of wash infrastructure; targeted communication strategies that provide information in accessible formats, such as braille, large print, or sign language and promotion of the linguistic identity of deaf persons, as per persons with disabilities act 6 of 2012; provide adapted guidelines such as ones specifically for caregivers and distribute them widely and on time; and monitor the inclusion of people with disabilities such as by including disability indicators in the ministry of health’s district health information system 2 (dhis2) tool. further improving systems so that they are more inclusive of people with disabilities can both reduce the impact of future pandemics on people with disabilities and contribute to improving systems for people with disabilities in the longer term. for example, healthcare facilities should be equipped to accommodate the needs of people with disabilities, including training staff, providing accessible testing and treatment options and sign language interpreters. within the idea of ‘nothing about us without us’ for example, organisations of people with disabilities (opds) should be involved in all these measures, both in designing them and in their implementation (mcbride-henry et al. 2023; who 2021), although additional resources may be needed to strengthen these organisations and expand their constituencies. these accessible measures could go a long way in contributing to the promotion and protection of the right to health during emergencies. further research is needed. through the national health research institute and ethics bodies, researchers should be encouraged to collect data, which is inclusive of disability indicators. for instance, in quantitative research, researchers should use appropriate tools such as the washington group short set of questions in surveys because this inclusion enables analysis of disability as a predictor of health outcomes, and/or measures effects of other phenomena on disability. this is needed to address other gaps in disability-specific data, required to provide more evidence on health inequities, thereby contributing to reduction of risks of infection during pandemics and leave no one behind. in qualitative research, there is need to also explore disability inclusion in policies and strategies, to improve health outcomes for people with disabilities in lmics like zambia during crisis times. additionally, further research is needed on measures that address social determinants of health such as chronic material poverty and deprivation, stigma and intersectionality. lastly, researchers should engage in implementation research to learn more about barrier removal and conduct research on feasibility of disability-inclusive measures such as harmonising the sign language needs and cultural needs for people with hearing impairments. implementation research should also study adoption, reach and effectiveness of interventions meant to improve access to health services for different impairment groups and marginalised populations during pandemics and other public health crises. strengths and limitations this study has several strengths like the recruitment of a diverse pool of participants across geographical locations, impairment types and gender. still, there are some limitations to consider. to begin with, our research was conducted in only 11 of 116 districts in zambia. most participants were recruited purposively through opds – often those affiliated with opds are very engaged in the disability community and may have received support during covid-19 from these organisations. we did include some participants through snowball sampling who were not part of the opds, which may have minimised this issue. conclusion in conclusion, we note that in this population, covid-19 interventions were largely unresponsive to the needs of people with disabilities, exacerbating the risk of exposure to infection, stigma and discrimination and other disadvantages like unmet triple health needs. the lack of adaptations to deal with the increased risk of covid-19 infection and serious illness for people with disabilities indicates a need for disability inclusion using both targeted and mainstreaming strategies (twin-track approach) in multisectoral response during pandemics. in future pandemic control, interventions should be based on the lived reality of people with disabilities and adapted to their requirements. hence, most of the response and prevention methods should have appropriate adaptations like emergency risk communication in braille, audio formats, sign language interpretation to ensure their usability, and target barriers of access to services could potentially contribute to a more disability-inclusive response. further studies are needed to quantify the gaps in access to health and to explore policies and strategies to improve health outcomes for people with disabilities in lmics like zambia, thereby contributing to the reduction of health inequities during crises and promoting the achievement of the larger sustainable development goals. acknowledgements the authors would like to thank the participants who took time to take part. a warm thank you to the organisations of people with disabilities for supporting the recruitment, zambart staff for arranging logistics of travel, chanda kaoma for supporting my local trips, vincent kauseni and mambwe muchelle for supporting the data collection, and all who supported q.e.s. thanks to the iced directors, hannah kuper and tom shakespeare. this study was supported by penda at lshtm. however, the views presented in the article are solely the authors’ views. this article is partially based on the author’s thesis entitled ‘disability inclusiveness of the multisectoral responce to crises’ for the degree of doctor of philosophy in public health at the university of zambia, with primary supervisor virginia bond and secondary supervisor morgon banks. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions all authors, q.e.s., j.a.m., c.m., l.m.b. and v.b., contributed to the conceptualisation and design of the study; q.e.s. led the data collection process, q.e.s. led the formal analysis with oversight from l.m.b. and v.b. and q.e.s. drafted the first draft. various versions were reviewed by q.e.s., j.a.m., c.m., l.m.b. and v.b., and the final manuscript was accepted by all authors. funding information this research was funded through a phd studentship for q.e.s., the first author, with the penda project (grant po8073) funded by the united kingdom’s foreign, commonwealth and development office. l.m.b., the fourth author’s time is partially funded through the arts and humanities research council (ah/x009580/1). data availability all relevant data generated or analysed during this study are included in this published article. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references boro, e. & beat, s., 2022, ‘barriers to covid-19 health products in low-and middle-income countries during the covid-19 pandemic: a rapid systematic review and evidence synthesis’, 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research evaluating the awareness and knowledge of dyslexia among primary school teachers in tshwane district, south africa mary m. makgato, monicca leseyane-kgari, madoda cekiso, itani p. mandende, rose masha african journal of disability | vol 11 | a807 | 28 april 2022 original research working in the time of covid-19: rehabilitation clinicians’ reflections of working in gauteng’s public healthcare during the pandemic hester m. van biljon, lana van niekerk african journal of disability | vol 11 | a889 | 28 april 2022 original research how education, training and development support the wellness of employees with disabilities zelna van niekerk, mbulaheni o. maguvhe, meahabo d. magano african journal of disability | vol 11 | a882 | 29 april 2022 original research the lived experience of people with upper limb absence living in uganda: a qualitative study dafne zuleima morgado ramirez, brenda nakandi, robert ssekitoleko, louise ackers, erisa mwaka, laurence kenney, cathy holloway, maggie donovan-hall african journal of disability | vol 11 | a890 | 20 may 2022 original research monitoring disability inclusion: setting a baseline for south africa helen suich, marguerite schneider african journal of disability | vol 11 | a1020 | 27 may 2022 original research a path toward disability-inclusive health in zimbabwe part 1: a qualitative study on access to healthcare tracey smythe, thubelihle mabhena, shepherd murahwi, tapiwanashe kujinga, hannah kuper, simbarashe rusakaniko african journal of disability | vol 11 | a990 | 30 may 2022 66 73 85 93 105 114 125 138 150 page i of iv table of contents community paper the development of a policy brief on physical activity and health in africa for children and adolescents with disabilities: covid-19 and beyond rowena naidoo, verusia chetty, marie e.m. young, phindile e. mahlalela, philippe j. gradidge, soraya maart, dané coetzee, brett smith, estelle lambert african journal of disability | vol 11 | a1100 | 15 december 2022 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disability-inclusive health in zimbabwe part 2: a qualitative study on the national response to covid-19 tracey smythe, thubelihle mabhena, shepherd murahwi, tapiwanashe kujinga, hannah kuper, simbarashe rusakaniko african journal of disability | vol 11 | a991 | 30 may 2022 original research physical activity promotion in persons with spinal cord injuries: barriers and facilitators in low-resource communities candace vermaak, suzanne ferreira, elmarie terblanche, wayne derman african journal of disability | vol 11 | a988 | 09 june 2022 original research the subjective experiences of students with invisible disabilities at a historically disadvantaged university carushca de beer, serena isaacs, cameron lawrence, gugulethu cebekhulu, jade m. morkel, jonathan nell, noluthando mpisane, wayne p. van tonder, yolanda r. mayman, lobisa z. thobenjane, athena pedro african journal of disability | vol 11 | a932 | 10 june 2022 original research the matrix of linguistic exclusions impeding career construction for d/deaf learners unati stemela-zali, harsha kathard, maximus m. sefotho african journal of disability | vol 11 | a935 | 13 june 2022 original research towards interventions on school dropouts for disabled learners amidst and post-covid-19 pandemic tawanda makuyana african journal of disability | vol 11 | a1009 | 24 june 2022 original research the support needs of families raising children with intellectual disability mantji j. modula african journal of disability | vol 11 | a952 | 27 june 2022 original research teaching learners with autism in the south african inclusive classroom: pedagogic strategies and possibilities moleli nthibeli, dominic griffiths, tanya bekker african journal of disability | vol 11 | a979 | 30 june 2022 original research experiences of spinal cord injury patients admitted to the rehabilitation unit at the national referral hospital in khomas region, namibia daniel o. ashipala, lettie langendorf african journal of disability | vol 11 | a1018 | 27 july 2022 original research psychosocial challenges of children with disabilities in sekhukhune district, limpopo province of south africa: towards a responsive integrated disability strategy matthews m. makwela, elizabeth i. smit african journal of disability | vol 11 | a799 | 28 july 2022 158 171 179 189 200 209 218 230 238 original research challenges of caregivers providing care to children with disabilities at non-governmental organisations in tshwane townships, south africa sharifa moosa-tayob, patrone r. risenga african journal of disability | vol 11 | a930 | 28 july 2022 original research strategies employed in coping with physical disabilities acquired during adulthood in rural south africa marubini c. sadiki, israel kibirige african journal of disability | vol 11 | a907 | 05 august 2022 original research exploring the role and lived experiences of people with disabilities working in the agricultural sector in northern nigeria the agricultural sector in northern nigeria precious n. sango, mohammed bello, roy deveau, kevin gager, belinda boateng, hauwa k. ahmed, mohammed n. azam african journal of disability | vol 11 | a897 | 16 august 2022 original research provision and use of physical rehabilitation services for adults with disabilities in rwanda: a descriptive study anne kumurenzi, julie richardson, lehana thabane, jeanne kagwiza, ines musabyemariya, jackie bosch african journal of disability | vol 11 | a1004 | 30 august 2022 original research exploring senior phase teachers’ competencies in supporting learners with specific learning difficulties: implications for inclusive education mubi f. mavuso african journal of disability | vol 11 | a901 | 31 august 2022 original research activity and participation experiences of people with disabilities in ethiopia terry krupa, rosemary lysaght, yetnayet s. yehuala, heather m. aldersey, molalign b. adugna, dorothy kessler, beata batorowicz, jasmine montagnese, klodiana kolomitro african journal of disability | vol 11 | a1002 | 16 september 2022 original research mobility impairment and life satisfaction in the northern region of malawi jared m. alswang, william b. belshe, dexter killi, weston bandawe, erin s. silliman, aaron c. bastian, brooke k. upchurch, megan f. bastian, sierra m. pinal, mark b. klein, bertha ndhlozi, mauricio silva, john chipolombwe, rachel m. thompson african journal of disability | vol 11 | a1013 | 22 september 2022 original research implementation of un convention on the rights of persons with disabilities in public and private schools in three districts of uganda elijah musenyente, marie l. han, michel knigge african journal of disability | vol 11 | a908 | 27 october 2022 249 259 267 278 291 299 309 316 page ii of iv http://www.ajod.org open access table of contents original research the effects of cognitive effort on academic performance of learners with cochlear implants in a private mainstream school in gauteng lior blumenthal, maximus m. sefotho african journal of disability | vol 11 | a886 | 28 october 2022 original research guidelines for leadership development of youth with physical disabilities through leisure education: a delphi study makhaya j. malema, luzaan africa, linda caldwell, marie young, lisa wegner african journal of disability | vol 11 | a1073 | 04 november 2022 original research a case study of interventions to facilitate learning for pupils with hearing impairment in tanzania tron v. tronstad, bjørn gjessing, ingvild ørland, tone øderud, cosmas mnyanyi, isaack myovela, jon øygarden african journal of disability | vol 11 | a974 | 10 november 2022 original research ‘i might be lucky and go back to school’: factors affecting inclusion in education for children with disabilities in rural malawi lena m. banks, xanthe hunt, khumbo kalua, providence nindi, maria zuurmond, tom shakespeare african journal of disability | vol 11 | a981 | 14 november 2022 original research the resilience of learners with specific learning disability in unequally resourced learners with special education needs schools in diverse contexts daphney mawila african journal of disability | vol 11 | a1044 | 29 november 2022 original research the status and use of prosthetic devices by persons with lower limb amputation in rwanda robert ngarambe, jean baptiste sagahutu, assuman nuhu, david k. tumusiime african journal of disability | vol 11 | a1081 | 09 december 2022 original research factors affecting length of hospital stay in stroke survivors in south africa: a call for a stroke unit stephanie c. pillay, roxann redant, nadia umuneza, azra hoosen, fiona breytenbach, sameera haffejee, zvifadzo matsena-zingoni, kganetso sekome african journal of disability | vol 11 | a1065 | 12 december 2022 329 337 346 355 367 375 383 original research non-disclosure of abuse in children and young adults with disabilities: reasons and mitigation strategies northwest region of cameroon glory t. tsangue, jacque chirac awa, josephine nsono, charlotte w. ayima, pius m. tih african journal of disability | vol 11 | a1025 | 14 december 2022 original research literature profiling on tourism, impairment and disability issues: a future directional guide tawanda makuyana, engelina du plessis, oliver chikuta african journal of disability | vol 11 | a862 | 14 december 2022 original research the consequence of head-loading on the neuro-musculoskeletal health of the ilembe district youth of kwazulu-natal tebogo g. motaung, terry j. ellapen, yvonne paul african journal of disability | vol 11 | a1039 | 14 december 2022 original research quality of life and its predicting factors for tunisian children with cerebral palsy ghanmi marwa, sahbi mtawaa, emna toulgui, rihab moncer, walid wannes, khaled maaref, sonia jemni african journal of disability | vol 11 | a1046 | 15 december 2022 original research a review of the framework and strategy for disability and rehabilitation services in south africa naeema a.r. hussein el kout, sonti pilusa, khetsiwe dlamini masuku african journal of disability | vol 11 | a893 | 15 december 2022 conference report child disability and family-centred care in east africa: perspectives from a workshop with stakeholders and health practitioners pauline samia, susan wamithi, amina kassam, melissa tirkha, edward kija, ayalew moges, arnab seal, peter rosenbaum, robert armstrong african journal of disability | vol 11 | a931 | 29 july 2022 390 404 421 428 437 447 page iii of iv editorial disability unplugged: what really matters to people with disabilities? chioma ohajunwa, callista kahonde, arne h. eide, lieketseng ned african journal of disability | vol 11 | a1172 | 15 december 2022 opinion paper promoting regional coherence and cohesion amidst multiple assistive technology initiatives in africa surona j. visagie, malcolm maclachlan, elsje scheffler, nikola seymour african journal of disability | vol 11 | a937 | 10 february 2022 453 456 opinion paper parenting a child with disability in rural south africa: navigating the healthcare system marubini c. sadiki african journal of disability | vol 11 | a942 | 25 october 2022 opinion paper transport experiences of people with disabilities during learnerships amanda e. gibberd, ntombizivumile hankwebe african journal of disability | vol 11 | a936 | 18 october 2022 463 466 vol 11 (2022) special collection: disability unplugged http://www.ajod.org open access table of contents opinion paper challenges and opportunities of centring the african voice in disability research lieketseng y. ned, kudakwashe dube, leslie swartz african journal of disability | vol 11 | a1089 | 31 october 2022 review article the chaeli campaign journal club: strengthening evidence-based practice and contributing to practice-based evidence in under-resourced south african communities rosemary luger, martha geiger, olwethu nqevu, ann bullen, faizah toefy african journal of disability | vol 11 | a943 | 18 may 2022 original research local knowledge in inclusive education policies in africa: informing sustainable outcomes chioma o. ohajunwa african journal of disability | vol 11 | a941 | 31 january 2022 original research key considerations for an inclusive framework for youth with disabilities in post-apartheid south africa marlene f. le roux african journal of disability | vol 11 | a954 | 11 november 2022 473 477 482 490 original research introducing the including disability in education in africa research unit at the university of cape town richard vergunst, judith mckenzie african journal of disability | vol 11 | a946 | 24 january 2022 original research post stroke health-related quality of life, stroke severity and function: a longitudinal cohort study tasneem hartley, marlette burger, gakeemah inglis-jasiem african journal of disability | vol 11 | a947 | 26 january 2022 original research the development of a suitable training model for students with disabilities at a training institution in south africa johanna c. janse van rensburg-welling, jean e. mitchell african journal of disability | vol 11 | a949 | 09 december 2022 reviewer acknowledgement african journal of disability | vol 11 | a1161 | 14 december 2022 499 504 514 520 page iv of iv abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) manel abid school of health sciences and techniques, university of sousse, sousse, tunisia roseline galipeau department of nursing, université du québec en outaouais (uqo), gatineau, canada mariem gaddour department of physical medicine and functional rehabilitation service, university hospital sahloul, sousse, tunisia faculty of medicine of sousse, university of sousse, sousse, tunisia sahbi mtaoua faculty of medicine of sousse, university of sousse, sousse, tunisia department of physical medicine and functional rehabilitation service, university hospital ibn jazzar, kairouan, tunisia rihab moncer department of physical medicine and functional rehabilitation service, university hospital sahloul, sousse, tunisia faculty of medicine of sousse, university of sousse, sousse, tunisia sonia jemni department of physical medicine and functional rehabilitation service, university hospital sahloul, sousse, tunisia faculty of medicine of sousse, university of sousse, sousse, tunisia citation abid, m., galipeau, r., gaddour, m., mtaoua, s., moncer, r. & jemni, s., 2025, ‘clinical and maternal factors associated with pain and quality of life in children with cerebral palsy’, african journal of disability 14(0), a1731. https://doi.org/10.4102/ajod.v14i0.1731 original research clinical and maternal factors associated with pain and quality of life in children with cerebral palsy manel abid, roseline galipeau, mariem gaddour, sahbi mtaoua, rihab moncer, sonia jemni received: 03 apr. 2025; accepted: 08 june 2025; published: 18 aug. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: cerebral palsy (cp) represents the most common and disabling motor disorder in childhood. it can lead to chronic pain and reduced quality of life (qol). these challenges can also affect mothers, who are typically the primary caregivers, contributing to physical and psychosocial strain. objectives: this study explored the associations between motor impairment, chronic pain, and qol in children with cp, as well as maternal stress and pain intensity, and examined their mediating roles. method: a cross-sectional study was conducted with 132 mother–child dyads in tunisia. children were aged 4 to 12 years. the gross motor function classification system, the cerebral palsy quality of life questionnaire, the visual analogue scale, and the perceived stress scale were used to assess motor impairment, quality of life, and chronic pain intensity in children with cp, as well as maternal pain intensity and stress. results: motor impairment was significantly associated with lower child qol (β = −0.671; se = 0.657, p < 0.001) and higher pain intensity (β = 0.5; se = 1.213, p < 0.001). maternal stress partially mediated the relationship between motor impairment and child qol (sobel test = −4.073; p < 0.001). maternal pain also partially mediated the relationship between motor impairment and child pain (sobel test = 2.505; p = 0.012). conclusion: these findings highlight the significant impact of motor impairment on qol and chronic pain intensity in children with cp. contribution: this study emphasises the mediating roles of maternal stress and pain intensity, suggesting that interventions should address both the physical symptoms of cp and the psychosocial well-being of children and their mothers. keywords: youths; parents; stress; functional disabilities; developmental disabilities. introduction background cerebral palsy (cp) is one of childhood’s most frequent developmental disabilities, with a current overall birth prevalence rate of 3.4 per 1000 live births in lowand middle-income countries (mcintyre et al. 2022). it is caused by a non-progressive lesion or abnormality of the developing and immature brain (dan et al. 2025). it is the leading cause of motor impairment in children and is characterised by movement disorders, muscle tone, posture and secondary musculoskeletal problems (dan et al. 2025). in addition to motor impairment, children with cp are at greater risk for pain. in the literature, pain in children and youth with cp is reported by 14% to 73% (mckinnon et al. 2019). chronic pain affects over 60% of cases (bambi et al. 2021). however, pain in children with cp is poorly understood, underrecognised and undertreated. because of its permanent nature, cp leads to long-term health problems, daily life activity limitations and lasting social participation restrictions (cooper, linden & kerr 2024). cerebral palsy interferes with different aspects of the lives of these children, such as their physical, physiological, social and emotional well-being, which explains their deteriorated quality of life (qol) (marwa et al. 2022; tedla et al. 2024). the relationship between pain, motor impairment, and qol among children with cp is the subject of much attention in many studies (almasri & alquaqzeh 2023; badia et al. 2014; bambi et al. 2021; barney et al. 2013; di lieto et al. 2025; mcgrath & palmer 2024; shearer et al. 2022). they also emphasise studying these relationships to understand the nature of the relationships and the potential associated factors. nevertheless, there has yet to be a consensus on the results obtained so far. in general, the literature has indicated many factors that influence the association between paediatric pain and functional disability. these factors may relate to disease characteristics or psychosocial conditions (poppert cordts et al. 2019). therefore, the experience of pain in children with functional disabilities is often influenced by parent-related factors (poppert cordts et al. 2019). having a child with a disability and chronic pain can disrupt the family’s life, especially the parents (jansen-van vuuren et al. 2022). as a result, it is primarily mothers who are at increased risk for emotional distress and psychosocial adjustment problems (pinquart 2018). they experience higher stress levels than fathers of children with cp (pinquart 2018). it has been shown that chronic pain in children with developmental disability may be accompanied by increased stress in the mothers (walsh, mulder & tudor 2013). in addition, chronic pain in children is often related to the parental experience of pain (poppert cordts et al. 2019). to date, no prior study has concurrently investigated the relationships between motor impairment, chronic pain, qol among children with cp, stress and pain experienced by mothers. conceptualising and integrating theoretical frameworks to explain these relationships could advance the development of more effective treatments for chronic pain in the context of cp that target parental or familial factors. therefore, this study adopts the biobehavioral model of pediatric pain (varni 1995) as a theoretical framework. this model suggests that several factors, including chronic illness, physical injury and invasive medical procedures, may influence paediatric pain behaviour and perception, as well as associated functional status and qol. the family environment is also identified as an intervening factor. it emphasises the role of psychosocial factors, such as emotional distress, family environment and parental responses to pain, in shaping the child’s pain experience and functional outcomes. guided by this model, concept of interest were studied to capture the multidimensional influences on paediatric pain, including biomedical factors (motor impairment, child pain, child qol) and psychosocial factors (maternal stress and maternal pain intensity). motor impairment was treated as the primary medical factor that characterises cp, while maternal stress and maternal pain were included as family-level psychosocial mediators potentially influencing child pain and qol outcomes. this framework guided both the selection of study variables and the analytic approach, including mediation analysis to examine the indirect effects of maternal factors on child outcomes. objectives this study aimed: (1) to examine the relationships between motor impairment, chronic pain and qol among children with cp and maternal stress and maternal pain’s intensity and (2) to investigate the mediating role of mothers’ stress and pain intensity on the relationships between motor impairment, chronic pain intensity and qol in children with cp (scientific posters 2021). a positive correlation between motor impairment and chronic pain and a negative correlation between motor impairment and qol were hypothesised. it was expected that the child’s chronic pain intensity would be negatively correlated with his qol. maternal stress was hypothesised to be positively correlated with the child’s chronic pain intensity and qol, and a positive correlation was expected between the child’s chronic pain intensity and the mother’s pain intensity. additionally, it was expected that maternal stress would act as a mediating variable between motor impairment and the child’s chronic pain intensity on the one hand and between motor impairment and qol on the other hand. finally, it was expected that maternal pain would act as a mediating variable between motor impairment and the child’s chronic pain intensity and between motor impairment and qol. a conceptual model illustrating these hypothesised relationships is presented in figure 1. figure 1: conceptual framework illustrating the mediating role of maternal stress and pain in the relationship between motor impairment and child quality of life and chronic pain. research methods and design setting and design a cross-sectional design was used to collect data among children with cp and their mothers, recruited from the department of physical medicine and functional rehabilitation of the university hospitals in tunisia: sahloul in sousse and ibn el jazzar in kairouan and from the department of neuropediatrics at the national institute of neurology mongi-ben hamida in tunis. these university-affiliated hospitals are key referral centres providing specialised care for children living with cp from across tunisia, including both urban and rural areas. the data collection period was from october 2018 to june 2019. sampling the sampling method was non-probability convenience. the selection of participants was made when they presented to the services at the time of the study. g*power v.3.1 software was used to calculate the sample size for the present study. the multiple regression test requires a larger sample size than the pearson correlation test. the parameters for the power analysis were three predictors, an effect size (cohen’s d) of 0.15, an alpha level of 0.05 and a power of 0.80. using these parameters, the software allowed us to calculate a sample size of 77 for the omnibus test and 55 to evaluate the individual predictors. a total of 132 participants present the required sample size in this study. selection criteria and study sample children and their mothers met the following inclusion criteria: (1) children were diagnosed with cp aged between 4 and 12 years. the age of 4 years was chosen because it is the ideal age for diagnosing clinical cp. children older than 12 years were not included because it is possible that new problems, such as body image, school pressure and employment, arise during adolescence (marwa et al. 2022). (2) the child with cp had chronic pain for 3 months or longer, according to the definition of chronic pain. (3) the mother did not have a severe or chronic illness, namely diabetes, inflammatory rheumatism, stroke and mental disorders. (4) the mother did not have a recent surgical history (less than 3 months) to affect their perceptions of their pain. (5) the mother presented written arabic language skills to complete the measurement instrument and consent form. (6) the child with cp did not have a genetic malformation syndrome, heart disease, diabetes or cancer, as reported by their physician, to rule out any chronic conditions that could add to their children’s burden of care. (7) the child did not have significant cognitive impairments, as determined by their physician. exclusion criteria included: (1) the presence of another family member with a disability or chronic illness. (2) and any questionnaire not completed in full was discarded. a total of 158 mothers of children with cp participated in the study out of 186 who were approached, resulting in a participation rate of approximately 85%. however, 28 mothers withdrew from participating because of a lack of time to answer questions. additionally, 26 cases were removed because of partial non-completion of questionnaires. the final number of participants included in the analysis was 132 (refer to figure 2). figure 2: flow of participants through the study. variables and instruments gross motor function classification system motor impairment in children with cp was determined by the gmfcs with a 5-level classification: level i (walking without limitations), level ii (walking with limitations), level iii (walking using a hand-held mobility device), level iv (self-mobility with limitations; may use powered mobility) and level v (transported in a manual wheelchair) (wood & rosenbaum 2000). the reliability and validity of the classification system were determined for children aged 2 months to 18 years (wood & rosenbaum 2000). the arabic version of the gmfcs was utilised in this study, and it is a reliable and user-friendly system (almasri & saleh 2015). it has demonstrated substantial agreement between parents and physiotherapists (weighted kappa = 0.63) was used in this study (almasri & saleh 2015). child and mother pain after determining the presence and chronicity of musculoskeletal pain in the mother and child, we assessed the pain intensity in mothers and their children using the visual analogue pain scale (vas). we asked the mother to determine the intensity of musculoskeletal pain she was experiencing in the past month and proxy report her child’s musculoskeletal pain. this method has shown consistent correlation across studies (brudvik et al. 2017; kelly, powell & williams 2002). cerebral palsy quality of life questionnaire the parent-reported version of this questionnaire was used for the present study and concerns children aged between 4 and 12 years and consists of 66 items (15 min – 25 min). the cp qol assesses seven dimensions of qol (waters et al. 2007). cerebral palsy quality of life questionnaire has proven its validity through many studies with good test-retest reliability, construct validity and internal consistency (chen et al. 2013; waters et al. 2007). this instrument has also been translated and validated in the arabic language (el-weshahi et al. 2017; marwa et al. 2022). in this study, we used the total cp qol score (average of all domains) and each of its domains. perceived stress scale perceived stress scale was used to measure perceptions of stress among mothers of children with cp (cole 1999). a high score indicates a high level of perceived stress. the arabic translation of the tool was validated (almadi et al. 2012). data collection procedure mothers and their children with cp meeting the inclusion criteria were approached individually and invited to participate in the study. mothers were first interviewed about pain data and socio-demographic characteristics of families and children. then we asked the mothers to complete the other study questionnaires individually (average duration 40 min). data on clinical characteristics and the level of motor impairment using gmfcs were collected from their physicians and the child’s medical record. statistical analyses analyses were performed using the statistical package for social sciences (spss) version 21 software. we opted for descriptive analyses of the sociodemographic variables and the clinical and therapeutic data. following the first objective of the study, bivariate correlation analyses using the spearman test were performed to test the hypotheses of the existence of correlations between study variables. next, we addressed the second objective by testing the steps described by baron and kenny (baron & kenny 1986) to show the mediating effect of maternal stress and maternal pain intensity. prior to conducting the regression analyses required for the mediation steps, assumptions of linearity, normality of residuals, independence of observations and absence of multicollinearity were assessed and confirmed. these steps involve bivariate and multiple linear regression analyses. four conditions must be met: link a: the independent variable has a predictive effect on the mediator variable; link b: the mediator variable has a predictive effect on the dependent variable; link c: the independent variable has a predictive effect on the dependent variable and link c’: the link c is strongly reduced (partial mediation) or even disappears (total mediation) when the mediator variable and the independent variable are used jointly to show a predictive effect on the dependent variable. after testing these four relationships to prove the mediating function of maternal stress and pain, we used the sobel test to determine the statistical significance of the mediating effect on the relationship between the independent and dependent variables and calculate the mediation coefficient. a program available at ‘https://www.quantpsy.org/sobel/sobel.htm’ was used to establish the results of this test. ethical considerations we took the agreement of the authors of the questionnaires used in the study. this study was approved by the medical ethics committee of the faculty of medicine of sousse, tunisia (approval number: cefms 05/2018). written informed consent of the mothers was obtained after they had been fully informed about the purpose of the study and the terms of participation conditions through detailed information and consent forms. given the anticipated cognitive and communication limitations in children with cp, because of the intentional inclusion of a wide range of motor impairment, child assent was sought when possible, depending on each child’s ability to understand the study procedures. participants were informed of their right to withdraw from the study at any time without justification. to ensure confidentiality, each participant was assigned a unique study code replacing their name on all study documents. the list linking names and codes was stored securely and separately in a locked file accessible only to the principal investigator. all identifying documents will be destroyed after study completion. all data will be treated confidentially at all stages of the study and in any resulting publications. results characteristics of the sample the characteristics of children with cp, their mothers and their families are presented in table 1 and table 2. the mean age of the children was 7.18 (s.d. = 2.91) years. half of the children had quadriplegia (n = 64). table 1: description of child, mother and family characteristics (n = 132). table 2: characteristics of children with cerebral palsy (n = 132). main statistical analysis: verification of assumptions the relationships between motor impairment, chronic pain intensity and quality of life in children with cerebral palsy and maternal stress and pain intensity table 3 presents the results of spearman’s correlation analysis between the study variables. table 3: spearman correlation coefficients between study variables (n = 132). our analysis shows a negative correlation between the gmfcs level and the total cp qol score. additionally, the correlation was positive and high for the relationship between gmfcs level and the child’s chronic pain intensity. moreover, there was a high and negative correlation between the child’s chronic pain intensity and the total cp qol score. the level of gmfcs was positively but weakly correlated with maternal pain intensity, and the correlation between gmfcs level and pss score was moderate and positive. the results demonstrate that the pss score was significantly correlated with the child’s chronic pain intensity and all dimensions of cp qol. the maternal pain intensity was positively and moderately correlated with the intensity of pain in their children. analysis of the mediating effect of maternal stress table 4 shows the results of the mediating role of maternal stress on the relationship between the level of gmfcs with the child’s qol on the one hand and with the child’s chronic pain on the other hand. baron and kenny’s three mediating conditions for the relationship between motor impairment and the child’s qol by maternal stress were satisfied only for five of the seven dimensions of cp qol (social well-being and acceptance, feeling about functioning, participation and physical health, emotional well-being and self-esteem, access to services). this mediation effect was significant when we calculated the sobel test for each dimension. however, our results confirm the significant mediating effect of maternal stress on the decrease in total cp qol score indicating poor qol and on the increase in the intensity of chronic pain in the child; both are explained by a higher gmfcs level (sobel test = −4.073; p <0.001 and sobel test = 2.964; p = 0.003). table 4: mediation analysis for maternal stress (n = 132). analysis of the mediating effect of maternal pain our findings indicate that maternal pain intensity significantly mediates the relationship between increased motor impairment and increased chronic pain in the child, as presented in table 5. this mediation is supported by the satisfaction of all three conditions, as evidenced by a significant sobel test result (sobel test = 2.505; p = 0.012). table 5: mediation analysis for maternal pain (n = 132). discussion this research is among the first studies investigating the role of parental factors in the relationship between chronic pain and qol in children with cp. more specifically, this is the first study to investigate the mediating role of maternal stress and pain in the relationship between motor impairment of cp with qol and with chronic childhood pain. given the pertinence of the subject, this work was accepted for presentation at the international health research forum (abid et al. 2019; abid et al. 2021). in this study, motor disability was a significant indicator of deterioration in qol, particularly for the dimensions of physical well-being. the current analysis reveals that the level of gmfcs contributes 65.5% to the variation in scores for the dimensions of physical well-being against 31.8% for those of psychosocial well-being. according to the literature, the greater the motor impairment of these children, the more their autonomy in carrying out activities of daily living is limited, which largely explains the poor qol for physical health (elad et al. 2018; vidart d’egurbide bagazgoïtia et al. 2021). this motor disability can lead to physical discomfort and cause social isolation (longo et al. 2020; marwa et al. 2022). in interpreting our findings, the additional theoretical perspective may help explain certain observed patterns beyond the scope of the primary framework used in this study (biobehavioral model of pediatric pain). the disability paradox theory (albrecht & devlieger 1999) explains how individuals with severe motor disabilities can experience a high qol, particularly in social and emotional aspects. according to this theory, achieving a balance between physical, intellectual and spiritual aspects, as well as supportive environmental and social factors, enables individuals to accept their situation and maintain life satisfaction despite their disability. factors such as fatigue, pain and low social support risk destabilising this balance and amplifying the distress and suffering of people with disabilities and their families. the present findings show a significantly positive correlation between motor impairment and pain intensity. these results are consistent with a study conducted in uganda, which also identified an association between increased motor impairment and greater severity of pain in children with cp (bambi et al. 2021). spasticity helps explain the deterioration of gross motor function and is one of the leading causes of pain in individuals with cp (heinen et al. 2022). specific analysis in this study confirmed that maternal stress and pain mediate the link between motor impairment and a child’s qol. mothers of children with significant motor impairments tend to report lower qol for their children, with maternal stress explaining this effect. this finding aligns with a previous study involving 201 children with cp and their parents (91.5% of whom are mothers), which also found a partial mediating effect of parental distress on the motor impairment-qol relationship (davis, mackinnon & waters 2012). this finding could be explained in several ways. firstly, the mother’s impaired psychological health can interfere with and even distort decision-making regarding her assessment of the child’s well-being and functioning (waters et al. 2000). secondly, distressed mothers can create a stressful family climate that impacts the child’s qol (davis et al. 2012; waters et al. 2000). thirdly, acute stress in parents of children with neurodevelopmental disabilities is often linked to increased care burdens, which can negatively affect adaptation processes and outcomes, as it may lead parents to rely more on behavioural disengagement strategies, thus worsening their perception of the children’s qol (carona et al. 2014). it was documented that parental psychopathology can influence the expression of psychological and somatic symptoms in children (bandura 1977). this fact supports the present findings, which document that maternal stress partially mediates the influence of motor impairment on the pain intensity of children with cp, so that the more severe the motor impairment, the more mothers experience higher stress, which will increase the intensity of pain in children. evidence from the literature suggests that maternal pain may be like maternal depression and family stress regarding its influence on children’s functioning and health (van lierde et al. 2020). this fact supports the present study results of the existence of a partial mediating effect of maternal pain intensity on the relationship between motor impairment and chronic childhood pain intensity. these results confirm the generational influence in expressing and experiencing pain between mother and child with cp, as the literature reports on maternal and child pain (stone & wilson 2016). in contrast, maternal pain did not mediate the relationship between gmfcs and child qol, contrary to the literature suggesting a link between parental health and child functioning in cp (barfoot et al. 2017). this unexpected finding may be explained in two ways. firstly, maternal pain could lead to increased maturity and responsibility in children, empowering them to take more control of their lives and adapt to their illness, indirectly improving their qol (evans & de souza 2008). this explanation may apply more to children less severely affected by cp without cognitive impairment. secondly, despite her health challenges, a mother often prioritises her child’s needs and properly exercises her role as a parent, potentially neglecting her well-being in the process (white et al. 2009). limitations this work shows some limitations. firstly, our sample does not allow us to generalise the results to the entire population of children with cp as we have identified the presence of chronic pain as a criterion for the inclusion of children to be able to apply the biobehavioral model of pediatric pain. secondly, our research design is based on a quantitative cross-sectional approach, which can only provide a static picture of the experience of children with cp suffering from chronic pain and their mothers. however, it will be better to choose a longitudinal design that will follow chronic pain’s dynamic and evolving nature and the qol of these children and maternal factors. in this study, we included children with a wide range of motor impairment to reflect the heterogeneity of cp and for better representation. as anticipated, cognitive and communication impairments were frequent among our participants, limiting their ability to self-report pain. therefore, the maternal proxy report was used as planned. however, we acknowledge that proxy reporting may not fully capture the child’s subjective experience. another limitation is that potential confounding factors, such as socioeconomic status, number of siblings, or paternal involvement, were not included in the analysis. future studies should consider controlling for these variables to better isolate the effects observed. despite recruiting participants from three leading university hospitals serving diverse regions in tunisia, the use of convenience sampling strategy may limit the generalisability of the findings to other settings or broader healthcare systems. the data collection timeframe may be seen as a limitation; however, the limited body of literature available on this subject in north africa and more specifically in tunisia (and more broadly in lowand middle-income settings) and the relationships between motor impairment, chronic pain and parents’ mental health in children with cp are still major clinical concerns. the mechanisms underlying these associations have not fundamentally changed in recent years, and they continue to directly affect patient care today. implications the present study expands knowledge about the influence of cp severity on pain and qol in children and the mediating role of parental factors, specifically stress and maternal pain. our findings suggest new directions for research, clinical practice and training (international health research forum, faculty of medicine of sousse, 06 december 2019; scientific posters 2021). health professionals should screen for physical and psychological symptoms in mothers of children with cp to prevent complications that could affect mothers and indirectly their children and families. support and psychological assistance for these parents are essential, along with family-centred care to involve families in the cp care process and ensure their empowerment. the results of the present study showed that physical qol scores are strongly correlated with motor impairment, and psychosocial domain scores remain low regardless of impairment level, suggesting that factors beyond motor disability may affect children’s qol, such as impairment executive functions and behavioural problems (blasco et al. 2023). given the mediating role of maternal stress identified in this study, future work should explore protective factors that may reduce maternal stress and anxiety-depressive symptoms, as well as monitor stress levels over time to inform interventions aimed at reducing caregiver burden. conclusion in conclusion, the understanding of cp as a public health problem has been advanced by the findings of the present study, which demonstrate that severe motor impairment in children with cp is likely to exacerbate the sensation of pain, thereby reducing qol. the critical role of maternal factors, namely stress and maternal pain, has been highlighted through our results. it will be essential to reveal factors that can reduce stress and even depressive symptoms and pain in mothers of children with cp. our findings will encourage health professionals to provide psychological support for the mothers and their children. also, there is a need for family-centred care to involve the family in the cp care process to ensure a sense of empowerment for them (scientific posters 2021). acknowledgements we gratefully acknowledge the contribution of dr jihen maatoug, an associate professor in the department of epidemiology, university of sousse, for statistical consultation of the research project. this study was previously presented as an abstract originally presented at the international health research forum, faculty of medicine of sousse, held in sousse, on 06 december 2019, and published in the conference abstract book, available at: https://www.medecinesousse.com/useruploads/files/%c3%a9v%c3%a8nements/ihrf%20abstracts%20book.pdf. the conference abstract, titled ‘child and maternal factors associated with pain and quality of life of children with cerebral palsy’, was subsequently expanded and revised for this journal publication. this republication is done with permission from the conference organisers. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.a. contributed to the conceptualisation, methodology, formal analysis and investigation of the study, and she was responsible for writing the original draft, validating the findings, curating the data and reviewing and editing the manuscript. r.g. contributed to the conceptualisation, methodology, formal analysis of the study, project administration, data validation and visualisation and ensured the supervision and participated in reviewing and editing the manuscript. m.g. contributed to the conceptualisation, methodology and formal analysis of the study and data validation, data curation and investigation and participated in reviewing and editing the manuscript. s.m. contributed to the methodology, formal analysis and investigation of the study and data curation and participated in reviewing and editing the manuscript. r.m. and s.j. contributed to the conceptualisation, methodology, formal analysis, investigation, project administration, validation and ensured the supervision and participated in reviewing and editing the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available from the corresponding author, m.g., upon reasonable request. disclaimer the views and opinions 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rochelle flint submissions@ajod.org tel: +27 (0)21 975 2602 fax: +27 (0)21 975 4635 african journal of disability abstract introduction inclusive research in africa challenges and obstacles to conducting inclusive research promoting inclusive research in africa conclusions acknowledgements references footnote about the author(s) callista k. kahonde department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation kahonde, c.k., 2023, ‘a call to give a voice to people with intellectual disabilities in africa through inclusive research’, african journal of disability 12(0), a1127. https://doi.org/10.4102/ajod.v12i0.1127 opinion paper a call to give a voice to people with intellectual disabilities in africa through inclusive research callista k. kahonde received: 02 sept. 2022; accepted: 09 jan. 2023; published: 25 apr. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract research looking into the day-to-day lives of people with intellectual disabilities (id) is on the increase in africa. however, not enough is being done to include people with id as active contributors to this research through inclusive approaches. inclusive research empowers people with id as they have the agency and autonomy to speak for themselves and they are given an active voice in the research process and outcomes. this leads to services that cater for what matters to people with id themselves as opposed to having their needs defined by other people. the common myths and misconceptions attached to id in africa, which increase stigma towards people affected by this type of disability can be abated by their visibility in research and evidence of their ability to express themselves. this article makes a call to researchers on the african continent to include people with id in research as active contributors to the research and not simply as research subjects or respondents. a background is given of global developments that have occurred in inclusive research based on the literature and the author’s personal experience, which african researchers can learn from while taking cognizance of the specific needs of their own contexts. this is followed by highlighting the gaps in africa. the article ends with a discussion of possible reasons for a lack of inclusive research in africa and suggestions and recommendations to address this gap. keywords: intellectual disabilities; inclusive research; africa; inclusion; human rights. introduction traditionally, people with intellectual disabilities (ids) were victims of extreme marginalisation, stigma, discrimination and other exclusionary practices (scior 2016). there have been notable efforts and initiatives in recognition of their right to social participation and inclusion globally, for example, through the normalisation model that was initially practiced in the scandinavian countries and also had a strong influence in the united states of america (usa), australia and europe (culham & nind 2003). deinstitutionalisation (mansell & beadle-brown 2010) and the emergence of policies and programmes informed by the social model of disability and the united nations convention on the rights of persons with disabilities (uncrpds) (united nations 2006) have also contributed to promoting their human rights and social inclusion. although there was a lack of documentation on the lives of people with id in africa in the past, global improvements, especially the advent of the social model and the uncrpd have resulted in recognition of the rights of this group within the continent across different sectors of society. however, a lot still needs to be done for many of them to experience all life domains on par with their contemporaries without id. this applies to their meaningful inclusion in research that seeks to understand issues impacting on their lives (capri & coetzee 2012). people with id can be recruited in research as participants, or they can be involved as co-researchers who contribute to the data collection and analysis process or research can even be more inclusive by including them in all the stages of research from initiating, planning, executing and guiding the process (bigby, frawley & ramcharan 2014). the exclusion of people with id as active participants in research projects is a universal phenomenon although significant strides have been made in promoting and conducting inclusive research in high-income countries, particularly australia, the united kingdom, ireland and the netherlands (bigby et al. 2014; strnadová et al. 2015; tilley et al. 2021; walmsley 2001). since the turn of the 21st century, there has been a proliferation of published original inclusive research and other writings on inclusive practices. walmsley (2001) and johnson and walmsley (2003) are the two widely quoted seminal literature sources discussing and defining the concept of inclusive research. walmsley (2001:188) defines inclusive research as research in which people with id are involved as active contributors to the research and not simply as ‘research subjects or respondents’. this entails research ‘with’ people with id that is inclusive versus research ‘about’ them (bigby et al. 2014; walmsley 2001). this research does not only empower people with id through the research process, but it leads to outcomes that embody their voice and desires as they actively partake in the research as collaborators, advisors, leaders or controllers of the research (bigby et al. 2014; johnson & walmsley 2003). it is the kind of research exemplifying the nothing about us without us principle (charlton 1998) and leads to evidence-informed services that cater for what matters to people with id themselves as opposed to having their needs defined by service providers, families and policy makers. there have been other prominent developments in inclusive research with people with id on a global level, for example, the launch of the guidelines for co-producing research with people with disability by scholars at the university of new south wales, sydney in australia (strnadová, dowse & garcia-lee 2022). the guidelines’ six stages, namely initiating, planning, doing, sense-making, sharing and reflecting, are a promising tool in guiding research that includes people with id as co-researchers that can be adapted for use in different contexts. another recent milestone in this area was the launch of the international association for the scientific study of intellectual and developmental disabilities (iassidd)1 special interest research group (sirg) on inclusive research on 16 december 2021 (for details, see https://iassidd.org/sirgs/inclusive-research/). the launch was followed by the sirg’s first webinar on 22 march 2022 (for details, see https://www.youtube.com/watch?v=edkp5ffic2e). within these developments, the author observed a lack of representation of african id researchers on the global inclusive research platforms and a clear gap in literature on inclusive research from africa as a continent. it is against this backdrop, that this article makes a call to african id researchers to be part of the global developments in inclusive research. african researchers are encouraged to learn from the experiences of those using inclusive approaches and adopt the lessons as suitable to african contexts. inclusive research in africa capri and coetzee (2012) published an enlightening opinion article on the ‘unethicality’ of excluding people with id in research. they based their arguments on the human rights framework specifically citing exclusion of people with id in research based on perceived cognitive incompetence as contravening the rights enshrined in the constitution of the republic of south africa (constitution of the republic of south africa [rsa], no. 108 of 1996). they further argued that the exclusionary practices contravene the social model of disability because the exclusion of people with id based on the perceived limitations posed by their cognitive impairments is tantamount to disabling them. an expanded discussion of benefits of including people with id in research and the risks and dangers of excluding people with id or coercing them to participate in research is presented in their article. ten years after capri and coetzee’s publication, research that engages people with id is still scarce in south africa and africa at large. although their article focused more on the south african context, the gap is arguably even more evident in the rest of africa. although there have been some attempts to give a voice to people with id in research in africa, they are usually involved as participants (e.g. ali et al. 2015; bukhala et al. 2017) without any opportunities to influence what is researched and how the research is conducted. in other studies, issues concerning people with id are explored by eliciting perspectives of family members or service providers of people with id (e.g. kahonde 2022; malapela, thupayagale-tshweneagae & mashalla 2020). there is also a sizeable number of publications focusing on professional practice, service delivery and policy (e.g. kleintjes et al. 2020; okyere et al. 2019). the common practice of conducting research for rather than with people with id ‘further incapacitates already subdued voices’ as argued by capri and coetzee (2012:2). as a continent, africa is still lagging in recognising people with id themselves as agents with autonomy to speak about their own lives and to get their voices heard in and through research as is the case in high-income contexts cited earlier. related to this is the lack of self-advocacy by people with id in africa, yet self-advocacy skills are prerequisite for people with id to engage in inclusive research effectively and successfully as concluded by bigby et al. (2014) based on their review of literature on inclusive research. on the other hand, participating in inclusive research has the potential to empower people with id with advocacy skills. with increased self-determination and agency, they can be emancipated from the paternalistic practices of professionals and family members who may have the tendency to want to speak on behalf of the person with id (chinn 2014). their self-advocacy can also change stigmatising attitudes towards people with id and erase their own self-stigma as their contributions to society are recognised and appreciated (goldberg & kleintjes 2022; roth, barak & peretz 2016). stigma towards people with id is evident globally (scior et al. 2020) but is arguably more prevalent in africa because of poverty, low literacy levels, a lack of advocacy and services affirming the abilities of people with id and sometimes spiritual explanatory models of id (mcconkey, kahonde & mckenzie 2016; mkabile & swartz 2020). challenges and obstacles to conducting inclusive research it is imperative in this article to highlight the reasons identified in the literature as hindrances to the conducting of research that includes people with id, which affect researchers internationally, albeit the literature discussing these challenges is mostly from high-income countries. generally, research with people with id whether they are participants or co-researchers is fraught with ethical challenges (carlson 2013; capri & coetzee 2012; iacono 2006). by its nature, id may render the people living with this disability vulnerable to different forms of abuses and dangers, therefore, ethics review committees tend to apply more stringent measures to research that involves people with id (ramcharan 2006). it is common for researchers to be impacted by ethics review committees’ conundrum of desiring to protect people with id while granting them the autonomy to choose whether they want to participate or not. thus, the process of seeking ethics approval can become a daunting, back-and-forth process, sometimes requiring multiple levels of review and engagements with ethics review committees on the researcher’s part (martino & schormans 2018). the paradox of coercion versus exclusion is an ongoing subject of debate and conflict (carlson 2013). iacono (2006:1) argued that the efforts to protect may inadvertently lead to ‘paternalistic protectionism, with a concomitant risk of non-inclusive and discriminatory decisions by institutional ethics committees’. carlson (2013:305) calls this the ‘double danger of inclusion or exclusion’. this means that researchers may be faced with the dilemma of considering people with id as vulnerable and in need of protection while the special considerations may consequently lead to their exclusion from research activities and opportunities for their voices to be heard and represented in research. from a human rights perspective, perceived vulnerability and assumption of homogeneity should not be a reason to exclude people with id from research (capri & coetzee 2012; martino & schormans 2018). the increasing number of projects successfully and effectively engaging people with id as participants or even more inclusively as co-researchers are evidence to prove such assumptions erroneous. there is also gatekeeping by formal and family caregivers around the participation of people with id, which is linked to medicalisation of id and infantilisation of people living with this disability whereby caregivers view them as perpetual children needing protection (martino & schormans 2018). in some instances, researchers can get a research proposal approved by institutional ethics review committees but still have diminished chances of recruiting participants or co-researchers because of the gatekeeping rules of service providers and caregivers (iacono 2006). in sum, inclusive research requires increased investment in time and resources on the part of the researcher, which relate to the ethics approval process discussed earlier, training of people with id involved, cyclical data collection process that might require extra audio-visual equipment, for example, to make details of research accessible and understandable to people with id and negotiating access to participants. research grants may not cover these extra costs, and it adds greatly to the workload of doctoral students and other novice researchers (martino & schormans 2018). literature is lacking from africa explicating the challenges of conducting research with people with id, neither is there literature documenting experiences of id researchers and lessons learnt, which can inform and guide id inclusive research on the continent. promoting inclusive research in africa it has already been made clear that although inclusive research has been gaining ground among id researchers in high-income countries for more than two decades, researchers in africa are not prioritising inclusion of people with id in research, particularly as co-researchers. this could be linked, among other factors, to the findings by mckenzie, mcconkey and adnams (2014) in south africa, that there is prioritisation of healthcare and protection for people with id while giving little attention to autonomy and choice. more effort and priority need to be put in promoting and advocating for all rights of people with id including the right to contribute meaningfully to research that seeks evidence to improve their lives. as encouraged by capri and coetzee (2012), id researchers in africa are called to acknowledge and interrogate their own ignorance and a lack of knowledge when it comes to inclusion of people with id in research. the same applies to the researchers’ ethical and moral values that may impact how they conduct the research and what they find (capri & coetzee 2012). as human beings, researchers are not immune to the negative stigmatising attitudes towards people with id alluded to earlier. combating stigmatising attitudes towards people with id by promoting their visibility in the community through access to schooling and productive employment (mcconkey et al. 2016; scior et al. 2020) is critical. giving them space for self-advocacy through social media, written content, campaigns and awareness-raising initiatives is also crucial (goldberg & kleintjes 2022). organisations supporting people with id also need to extend their advocacy to academic institutions and offer the support needed by researchers willing to co-research with people with id. that way, academic researchers in africa and the society at large can begin to appreciate the agency and capabilities of people with id. the required training of co-researchers with id and the back-and-forth nature of inclusive research methods make the process resource intensive (martino & schormans 2018). hence, the lack of resources is a likely deterrent for african researchers to undertake inclusive research. this is an area that needs to be prioritised by funders supporting african id researchers, including the governments as it would be exclusionary and ableist to dismiss inclusive research because of financial reasons. the lack of resources might also explain the lack of representation of african researchers on platforms such as iassidd mentioned earlier, which normally hold their conferences in high-income countries, except for the virtual conferences necessitated by the covid-19 pandemic. the current convenient and easily accessible virtual events and proceedings afforded by the covid-19 pandemic restrictions are an opportunity that can be leveraged by african researchers to learn from those with experience while considering how to implement the lessons in their own unique contexts. published inclusive research articles from other contexts also provide lessons for african scholars to learn from. although resources to train both people with id and academic researchers in africa may be scarce, the transformation must start somewhere. there is a need for innovative methods that are accessible to most people with id in africa, using inclusive research approaches that are relevant and responsive to the needs of the local context. one way to initiate inclusion with limited resources will be to adapt research methods and making data collection methods accessible to people with id as much as possible, for example, through use of accessible data collection methods such as easy-to-read documents, social stories, pictures and other visual tools. a few researchers in africa have attempted to do this (balton et al. 2022; kahonde & johns 2022; okyere, aldersey & lysaght 2021). once people with id get used to having their voices heard in research through accessible data collection methods, they may gain the skills and competence to engage academic researchers in studies that are more inclusive. crucially, training african researchers on inclusive research is imperative, and north–south and south–south collaborations (boshoff 2010) are needed for researchers to learn from each other for the benefit of people with id. boshoff (2010) argued that these collaborations are critical for giving voice to researchers from the global south who are usually underrepresented on global research platforms that are dominated by researchers from the global north. furthermore, south–south collaborations have an advantage of ‘shared problems and shared solutions’ (kerr-muir, lehasa & zondervan 2017) among nations from global south who share similar contextual factors. the training of academic researchers must be paralleled with training of self-advocates as self-advocacy skills have been found to be essential (bigby et al. 2014) for people with id to competently engage in research with academic researchers as already stated. also, the scarcity of inclusive research in africa calls for training and education of ethics review committee members on inclusive research methods and processes to improve their understanding and skills in reviewing inclusive research proposals and guiding researchers. the training must emphasise a shift from the paternalistic blanket view of people with id as a homogenous vulnerable group (martino & schormans 2018) to understanding that they are heterogenous, unique individuals who can benefit from research skills training and meaningful inclusion in research processes. conclusions inclusive research with people with id that uses context-relevant approaches is imperative in africa. one finds evidence of research and documentation on research conducted by people with physical and sensory impairments as lead researchers (see e.g. rohleder et al. 2021; rule & modipa 2012), but such type of research by people with id is hard to come by. when the research is not inclusive of the perspectives of people with id on what they regard as important to them, support services for people with id may only address their needs as perceived by others and fail to meet their actual needs and rights. this can result in poor physical and mental health stemming from exclusion from health services, employment, leisure and community life in general. inclusive research is also important for promoting advocacy skills among people with id as a means of shifting from a paternalistic culture to an empowering culture, and this can further reduce the stigma commonly experienced by this group. this approach to research requires looking outside the existing systems and finding common cause with disability organisations of and for people with id and for people with disabilities in general. it is hoped that this article and the global trends mentioned earlier can raise the interest of african researchers and id support organisations in promoting and conducting inclusive research. researchers will have to enter the terrain of inclusive research knowing the potential challenges but at the same time realising the immense benefits of inclusive research for people with id and their communities. acknowledgements the author would like to acknowledge professor roy mcconkey’s helpful comments to the initial draft of the article. competing interests the author declares that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. author’s contributions c.k.k. is the sole author of this article. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of the author. references ali, a., kock, e., 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february 2023, from https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities walmsley, j., 2001, ‘normalisation, emancipatory research, and inclusive research in learning disability’, disability & society 16(2), 187–205. https://doi.org/10.1080/09687590120035807 footnote 1. international association for the scientific study of intellectual and developmental disabilities is the biggest international organisation for intellectual disability researchers globally, which has membership from all continents of the world. it has the aim of promoting worldwide research and knowledge sharing and building of collaborations among researchers working on id research (timmons 2013). abstract introduction research method and design results conclusion acknowledgements references footnotes about the author(s) meghan s. white department of health, university of kwazulu-natal, south africa pragashnie govender school of health sciences, university of kwazulu-natal, south africa helga e. lister school of health sciences, university of kwazulu-natal, south africa citation white, m.s., govender, p., & lister, h.e., 2017, ‘community health workers lensed through a south african backdrop of two peri-urban communities in kwazulu-natal’, african journal of disability 6(0), a294. https://doi.org/10.4102/ajod.v6i0.294 original research community health workers lensed through a south african backdrop of two peri-urban communities in kwazulu-natal meghan s. white, pragashnie govender, helga e. lister received: 10 june 2016; accepted: 18 may 2017; published: 29 aug. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: as the south african government re-engineers primary healthcare (phc), the need for additional information on stakeholders involved in the process has emerged. of these are community health workers (chws), who have been identified as central to phc success. objectives: to profile the current chws within kwadabeka and clermont in kwazulu-natal, to describe their roles and to explore the barriers and enablers influencing their service delivery. method: a convergent mixed methods design was employed with a sample of chws with the use of a survey (n = 53) and two focus groups (n = 10) and semi-structured interviews with four ward councillors (n = 4). data were analysed statistically and thematically. results: the profile of chws reflected only women with a mixed age range and a majority of 59% who had not completed formal schooling. general work experience as a chw varied. there were diverse opinions expressed towards the chw role which related to their job title and identity, supervision, remuneration, growth pathways and psychological and emotional issues. whilst the national community health worker profile framework was established for the chw programme, there are several factors lacking in the current chw programme such as a formal growth pathway or formal training to align the chws with the national qualifications framework. conclusion: the study findings are essential for the monitoring and evaluation as well as development and refinement of policies that will assist in ensuring adequate rollout of phc with chws. introduction the world health organization (who) has identified a chronic global shortage of well-trained health workers, creating an essential need for sustainable development strategies for health systems (who 2006). primary healthcare (phc) is part of south africa’s sustainable development plan to establish equitable health and healthcare services. the principles of phc are evident in policy development in south africa from as early as the 1900s, including the national health services commission (nhsc or gluckman report) (republic of south africa 1945) and the african national congress’s (anc) health planning prior to 1994 (anc 1994). the anc provided the groundwork for the post-1994 health sector transformation, and recommendations developed at the 1978 alma ata conference on phc were included in policy, thus began a country-wide phc service rollout. currently, an estimated 5482 phc outreach teams service the uninsured1 population of south africa and these teams each need to reach 84% of the total population of south africa, who are based in rural areas, informal urban settlements and townships (department of health [doh] 2011b). community health workers in south africa key members of the phc outreach teams are community health workers (chws), defined as ‘people chosen within a community to perform functions related to healthcare delivery, who have no formal professional training or degree’ (van ginneken, lewin & berridge 2010:1110). chws screen, map, educate, link and extend phc in the communities for which they are responsible (networking hiv 2013). chws provide services to communities, families and individuals at community-based institutions and also at a household level in each municipal ward (ngcwabe & govender 2013). considering the importance that chws play in the rollout of phc in south africa, an investigation into the current chws in preparation for their participation in the rollout is necessitated. in most south african districts, there is a lack of knowledge of the demographic profile of chws as well as documentation around the efficacy of service delivery. this is re-iterated by ngcwabe and govender (2013) who argue that chws cannot fulfil their role as members of the ward-based phc outreach team (wbphcot)2 if they have not received appropriate education and training, and if they are not able to function at the required level of competence. taking the lead from international policy, south africa now strives to roll out a comprehensive phc programme, and thus direct knowledge of current chws and their experiences will be essential to guide the process of change in south africa. more importantly, it will also play a role in assisting the various stakeholders involved in healthcare policy guideline development to design policies that may be clearer to implement and thus more effective. pertinent policies, frameworks and acts pertaining to the community health worker programme several policies have been developed in light of the chw programme; however, the national qualifications framework3 (nqf), expanded public works programme (epwp) (department of public works 2017), the national community health worker policy framework (nchwpf) and basic conditions of employment amendment act, no. 11 of 2002 (south africa 2002) are some of the most pertinent to chws. these policies govern the chw programme; however, contradictions and policy gaps were noted. table 1 depicts the frameworks and how these govern important aspects of the chw programme specifically. table 1: pertinent frameworks in relation to the community health worker programme. in this article, the authors thus seek to provide a snapshot of the chw programme in two communities of kwazulu-natal (kzn) that was part of a pilot study into chws. it provides an opportunity to examine the out-workings of the implemented policies governing the chw programme by providing information around potential factors that impact service delivery. research method and design study area, design, procedure and analysis the research was based in two peri-urban communities in the ethekwini municipality, namely clermont and kwadabeka. according to the 2011 census (statistics south africa 2012), clermont has a population of 52 075. it covers an area of 6.94 km², with a density of 7500.8 inhabitants/km². kwadabeka has a population of 52 943. it covers an area of 11.87 km², with a density of 4630.4 inhabitants/km². the population in both communities consists mostly of persons with lower socioeconomic status. the housing varies between informal settlements, government-provided housing, private housing and hostels. the clermont kwadabeka area is seen as a relatively mature settlement. twenty-seven per cent of the population, resident in the area, are under the age of 15. of the residents, 58% are within the economically active age cohort; however, only 32% are employed. within the community, 42% use mini-bus or taxis, 42% walk or ride their bicycles. car ownership is extremely low and only 10% of the population use private vehicles to commute (ethekwini municipality 2010). the study followed a convergent mixed methods design (creswell 2014) with concurrent timing and a qualitative emphasis, with merging of data at the interpretation level. saturation sampling of chws and the ward councillors4 in the two communities was employed with a final sample of 53 chws and 4 ward councillors. a demographic survey with chws, two focus groups with chws and semi-structured interviews with four ward councillors were conducted. the following four main areas (with a total of 33 questions) were explored in the survey: (1) biographical information, (2) educational and skills information, (3) job understanding and (4) training. the focus groups with chws included a total of five open exploratory questions (with probes) exploring three main areas: (1) knowledge of their scope and role, (2) perceptions of barriers and enablers to their service delivery and (3) perspectives on their interactions in the community. the interviews with ward councillors comprised seven open-ended questions (with probes) covering three main areas: (1) knowledge of the role chws play in the community, (2) perception of possible barriers to and enablers of the service delivery by chws and (3) opinion of communities’ perception of the chw programme. the focus groups and interviews were digitally recorded with manual recording of fieldwork notes. these were transcribed and data were coded, categorised and organised into themes using nvivo version 10 via inductive reasoning. with the assistance of a qualified survey developer, surveys were developed online, with information being collated directly into excel spreadsheets once entered. the data were analysed descriptively and organised into two categories of data, namely nominal (e.g. age and years of experience) and ordinal data (likert scales regarding their opinion of the chws training). likert scales were analysed to find a central tendency for the opinion of the chws about their training and these data were summarised with a median. trustworthiness, reliability and validity the survey was developed with the assistance of a survey developer, who assisted the researcher in creating the format of the survey in order to capture data as accurately as possible. the digital recordings and field notes were transcribed and audio recordings were validated for accuracy. other aspects around credibility, transparency and dependability were addressed by the provision of thick descriptions, verbatim quotations, triangulation of method (survey, focus groups and interviews), triangulation of sources (chws and ward councillors) and peer debriefing. the first author’s relationship with both groups of chws was considered and judgements suspended as part of bracketing by the primary author in an attempt to remain objective. member checking within the focus groups and interviews was used as a strategy to gain clarity and minimise misinterpretation of the data. analysis was performed as objectively and accurately as possible by the researcher, and care was taken to ensure the identified bias did not elicit an effect on the study, thereby adding rigor to the study (yin 2014). ethical considerations the researcher was granted ethical clearance from a human and social sciences ethics committee (hss/0498/015m) including kzn provincial administration ethics committee. permission from the ceo of the two community health centres (chcs) was also sought. informed consent was obtained with emphasis on the right to withdraw from the study and the low risk and minimal direct benefit of the study to the chws. results the multiple methods used in this pilot study have assisted in identifying the chws and their functioning within the chw programme in two communities of kzn. themes are discussed under the following headings: identity and wellness, education and training, knowledge and understanding of roles, and supervision and community education. during the presentation of the results, pseudonyms will be used. of the 53 chws who participated in the study, all were female, with a mean age of 40. twenty-two chws (40.7%) had a grade 12 (matriculation) level of education, 26 (48.1%) possessed a grade 11 and 5 (9.3%) had a grade 10 level of education. all chws expressed that they had been trained as a chw by completing the national certificate in home-based care, nqf level 1. this qualification enables them to work as a health promoter, assistant or health provider, as well as being a health networker within the community development context (south african qualifications authority 2012). the mean work experience was 7.3 years (range 1–15 years). most chws volunteered for an average of four years, prior to being officially employed by the doh as a chw. this particular group of chws had variable work experience. they reported that their experience arose from working in the community and that this was more useful than formal training. identity and wellness the group of chws had different job titles according to different individuals. the ward councillors and chws use the title ‘ccg’ (community caregiver), whilst the formal doh ‘chw’ (community health worker) has been adopted within policy and legislation. this difference in title could contribute to an apparent lack of clarity regarding job roles and expectations, which will be discussed further in the section ‘knowledge and understanding of roles’. seventy-eight per cent of the chws indicated that they enjoyed their jobs because they helped people. they felt that they were able to improve lives, especially since they were first in line to assist. ‘we are the first person who helps out the community, the nurses are there in the clinic waiting for the person, while the patient is lying on their bed, there is no nurse there.’ (participant 1, female, chw) other chws harboured negative perceptions about their work as a chw, since they perceived the community to be treating them negatively. as dudu states: ‘sometimes because the people are not aware and not knowing what we are doing, they are asking why are we getting money when we are not doing a proper job?’(participant 2, female, chw) the chws reported that the community had various expectations of the chw which constituted duties outside of their prescribed roles. these included expectations of being provided with a meal, requesting for prepaid electricity, being contacted when someone is in labour and expecting massages. as khanyo states, i can be angry because it is not my job. (participant 3, female, chw) in addition, some of the chws were identified as some other type of healthcare professional, as opposed to a chw. they were often seen as doctors or social workers. there was no clear distinction in the programme between ‘employee’ and ‘volunteer’. the chws receive a stipend, the amount of which appears to be in direct contravention of the south african labour laws. full-time employees should receive a monthly salary in accordance with a national standard. at the time of the research, the chws were receiving a stipend based on a province-dependent standard. in addition, they were not working under any basic conditions of employment and, therefore, not legally protected. this was also seen nationally in south africa, within another research report (lund & budlender 2009). many of the chws described symptoms of emotional exhaustion or burnout. these feelings were described as arising from: a lack of supportive supervision, a lack of formal growth pathway within the chw programme, the receipt of an inadequate stipend, a lack of debriefing following interactions with families experiencing poverty, as well as a dangerous work environment within the communities which they serviced. mcintyre, mitchell and ngcwabe (2012) suggest that ‘their stipend might be less worrying to chws if there were … definite career paths stemming from chw and real opportunities to pursue them’ (p. 4). the chw to community population ratio at the time of the study was 1:4074, in other words seven times more than the recommended amount of 1:500 (singh & sachs 2013). this can be a clear reason for the chws being overworked and thus experiencing vocational exhaustion. burnout has been documented in international literature as affecting healthcare workers in general, and especially community mental health workers (salyers et al. 2013; tripathy, geol & kumar 2016). they are observed as being more likely to have depression and mental health problems than other members of the healthcare team (silva & menezes 2008). education and training the training for formal qualification as a chw requires an entrance requirement of matriculation. there is thus a disjuncture between what is possible given the chws’ education levels and the feedback received during data collection. nationally, chws have low levels of education (jinabhai, marcus & chapona 2015). however, ward councillor sandile stated that despite very few of the chws having achieved grade 12, many of them were able to do what people with a grade 12 education could not do because of their passion and commitment: ‘a ccg member it needs a person who has understanding, who is going to love their job, the person who understands people because you may find that you have a grade 12 but you won’t go and wash a person who is very sick. some people don’t have the patience to go and take medication for another person is very sick you understand.’ (participant 20, male, ward councillor) globally, in an examination of selection and training processes in the intervention literature focusing on the role development of chw, o’brien et al. (2009) identified ‘a wide variation in the length and content of chw training … in the reviewed studies’ (p. 262). this is consistent with the chws as there is a complexity of training protocols issued through the various doh centres. since chws are not all employed at the same time, 28% have had significantly more training by a variety of organisations (which include doh, non-governmental organisations and the like). within this study, on average, the chws spend 5–10 days in training per month. of the participants, 7% considered their training as average and that they did not have the necessary skills to perform their jobs. the remaining 93% believed that they did have the necessary skills and that the training was good. their perception of personal competence is not aligned to the rapid appraisal of chws nationally, where chws were seen as inadequately prepared and ‘limited by competencies created through legacy vertical programmes’ (jinabhai et al. 2015:2). however, when questions were used in the survey to validate the training and knowledge of the chws, there appeared to be discrepancies. an example is that 100% of respondents were able to describe what physically happens with the body when someone has a cerebro-vascular accident (cva)5 or stroke; however, only 7% were able to identify what causes a cva or stroke. of the group, 94% identified further areas within which they required training. these included wheelchair training (the different types, being able to identify when someone needs a wheelchair and wheelchair transfers), knowledge on paediatric development, basic nursing skills, dementia training, mental health training, disability, health promotion, counselling skills, prescription of exercises, immunisations, prevention of mother to child transmission, tuberculosis, health education, maternal health, diabetes and cva or stroke (aetiology and interventions). currently, there appears to be no formal growth pathway for chws. this absence contributes to chws desiring to seek alternative means of qualifications, for example in nursing. the chw programme is an essential contribution to the phc service and the lack of an upward mobility path, standardised payment method and payment amount, and recognition of experience for the chws could be detrimental to the long-term sustainability of the programme. tripathy et al. (2016) noted that fewer career development opportunities were associated with individual level de-motivators among chws in rural health facilities in india. in south africa, the need was established to, through education, enable chws to develop a career path (jinabhai et al. 2015). all councillors indicated that there should be a career progression for chws’ careers and that the chws should receive training so they could progress to more formal employment levels. knowledge and understanding of roles all chws in the country should be trained with the phc training package, which identifies 12 roles that are to be performed by the chws working in phc (doh 2011a). these include home-based care, counselling, support and stress relief, health promotion and education at a household level, referral to relevant departments, initiative and support home-based projects, liaison between doh and the community, mobilisation against diseases and poor health through campaigns, word of mouth, etc., directly supervised treatment support (dots), screening of health-related clinic cards for compliance or default, assessment of health status for all family members and giving advice, weighing infants and babies and recording in ‘road to health’ card and providing prevention of mother to child transmission of hiv/aids (doh 2011a). reportedly, all of the chws were trained according to the same norms and standards. however, of the group of 53 chws in this study, 30% of the chws identified three roles, 20% identified four roles, 17% identified five roles, 17% identified six roles, 11% identified seven roles, 3% identified nine roles and 2% identified 10 roles with none of the chws being able to identify all 12 roles. chws mostly identified home-based care as their most frequent task, whilst weighing infants and babies and recording the weight on a ‘road to health’ card was the least performed task. notwithstanding the naming of the roles, chws were asked to identify their job tasks. they noted the following as part of their job descriptions: collecting information from the community, door-to-door visits to assess needs, health education and training, encouraging family planning, encouraging medication compliance, encouraging mothers to immunise their children, establishing community profiles, making the family happy, referral to other doh departments, calling ambulances for sick people, educating pregnant girls not to smoke ‘whoonga6’ (grelotti et al. 2014), teaching them to make gardens, teaching them how to cook and teaching the family how to care for their sick relative. the chws iterated that they performed jobs that were outside of their prescribed roles. seventeen per cent of them however refused to do these. the remaining 93% of respondents, however, described the following additional roles: collection of grants, calling ambulances, assisting in delivery of babies, doing the laundry, taking calls after hours from patients, referrals for food parcels, cleaning of the household, cooking meals, washing or bathing the clients, working in the patient’s garden, taking patients to apply for a grant, working outside of allocated areas and working on the weekend. supervision and community education heathe (2011) highlights that systematic supervision is necessary for successful chw programmes. the chws should have clear expectations from their supervisor and be provided with regular support and mentorship. within the communities studied, there was only one chw supervisor per chc site and these chw supervisors were fulfilling dual roles of supervisor and nurse with the chc or clinic. participants felt that minimal supervision and support was being provided, which could create an ineffective system. also at the time of the study, the nchwpf did not detail an action plan to establish supportive supervision programmes. jinabhai et al. (2015) note that there is a national lack of management training, which results in poor chw supervision and management. the key point strategy for the chw programme is community education. swider (2002) identifies that chw intervention is most effective when implemented within a carefully defined target population and when this population has been educated about the programme to understand the roles and tasks of chws. this study revealed that chws are not completely aware of their roles in the chw programme. they thus appear non-adherent to the restrictions in their formal roles and tasks. some chws had good interactions with the chcs and resident nurses, with others reporting poor interactions. poor communication was noted in the referral of clients to the chc as was required by chws, with a report that they would not receive feedback from the nurses regarding these clients that were referred. anseel and lievens (2007) highlighted in their study the long-term impact of the feedback environment on job satisfaction. in light of this, the lack of validation derived from a lack of feedback appeared to contribute to poor job satisfaction of the chws. jinabhai et al. (2015) also noted a national lack of back referrals from clinics to the wbpchot which include chws. issues around stipends and remuneration one of the most active discussion areas was focused on the stipend received by chws. all chws reflected negatively on the fact that they earned a meagre stipend whilst they needed to cover their own transport to and from their allocated area of work and that they worked a normal work day of 8 h duration. some chws did not access formal modes of transport and instead walked to and from their allocated area of work. a lack of resources, in particular not having equipment such as masks or gloves, was also raised: ‘but the job is a lot of work but no money, how can you live?’ (participant 4, female, chw) ‘it’s hard because some of us are using the small money they give us to take transport to the area we are working. that makes it very hard because there is little money left sometimes.’ (participant 5, female, chw) in addition, the chws reported that the community questioned their stipend. all ward councillors agreed that the stipend was an issue of concern for the chws. ward councillor sbusiso stated that if the issue surrounding the stipend was resolved, it would help to reduce the ‘excuses the chws were providing so as to not work’. councillor sandile also echoed this sentiment and indicated that if the chws received more money, then they would be able to do more. councillor bonga identified that the challenge lay in identifying people who were passionate about being a chw and those that are not just in it for the money. ward councillors’ opinions of the community health worker programme all ward councillors agreed that in theory the chw programme was highly necessary, but that the programme needed to be coordinated better. the councillors stated that it was also important to have awareness campaigns so that the community learned about the chws’ roles and that there needed to be more education about the programme in the community. ward councillors sandile and bonga reported positive experiences with the chws in their wards. they were of the opinion that chws appeared to enjoy their jobs, loved their communities and felt that they were making an impact because of their compassion for the communities they serve. both of these ward councillors reported a mutual relationship between chws and themselves in order to ensure service delivery. ‘as government officials we can’t be on the ground we have to make things happen we have to come with solutions but we can’t come with solutions if there are no field workers people who go out in the community find out exactly what is happening and then come back to report.’ (bonga, participant 21, male, ward councillor) ward councillor sbusiso stated that his experiences with the chws had been difficult and disturbing. he described the chws as ‘ineffective, lazy, not wanting to do the best they could, not wanting to work, dragging their feet, working only for money and not for the passion of the job and thus having lost their commitment to the job.’ (participant 22, male, ward councillor) he summarises it as follows: ‘so, in a nutshell it is difficult to work with them they have lost the commitment that is expected of them right now. i don’t even know where they are, maybe they are sleeping at home, and maybe some of them are in the field.’ (participant 22, male, ward councillor) the councillor went on to say that he questioned what chws actually did in the field as there was a disparity between what was reported to him and what he observed. the chws were said to rarely report to the councillor, when requested, and did not hand in the relevant documents when required. these findings show the profile of the chws studied as well as provide deeper insight into their knowledge of job roles, expectations from the community, training and supervision and feelings of working as chws. it is clear that some chws have positive working experiences, whilst others have negative working experiences. conclusion this article has provided an overview of the chws within two peri-urban communities of kzn. the study has identified implications for the human resources for health in south africa. it highlights violations of a quality and equitable health service, thus posing serious risks to the implementation of the phc re-engineering to provide universal health coverage. this study has numerous implications for policy and practice of the essential phc service. the pillars on which the national health insurance is being built require an efficient chw team, to enable home-based care and early identification of illness and disease, thus limiting future disability. in addition, the service should strive for health promotion and disease prevention, which will create greater thriving and healthy communities, who are living towards their full potential. recommendations kautzky and tollman (2008) call for a ‘careful consideration of the skills and competencies needed in the phc system’ (p. 27) as critical to its success. although this study focused only on the chws in two communities, these recommendations may be pertinent within other communities as well as in the system as a whole. evaluation and monitoring systems should include feedback and discussion forums, where challenges experienced by both the chw and the community are addressed. this should include ward councillors and chw supervisors aiming towards a climate of communication via the war rooms7 where the communities are also involved. each chw programme requires review according to the provincial and national strategies and standards, to assess their efficacy. there should be feedback provided to the chws when they refer clients to the chcs. this will improve the case management of the clients as well as improve job satisfaction since the chws will have an improved understanding of the ongoing health service provided to their clients. supervision as discussed, this study had only one supervisor per site responsible for the chws from each chc. because of the high work load and support required, it is unsustainable and thus at least two supervisors should be appointed. chw supervisors should not be required to hold dual responsibilities of both nursing and supervision. their role needs to be dedicated to the training, supervision and evaluation of the chw programme. supportive supervision should be thoroughly outlined and include elements of record reviews, observations, performance monitoring, constructive feedback, provider participation, problem solving and focused education (bosch-capblanch & garner 2008). supervision needs to be supportive and address issues of burnout and compassion fatigue that may be experienced by the chw. there should be a protocol where once this has been identified, a clear pathway of intervention is outlined. this needs to be implemented and followed up. there should be clear distinction between chws experiencing symptoms of burnout and exhaustion and those that have a poor attitude towards service delivery. an appropriate intervention strategy is required for those with a poor attitude and poor service implementation. community awareness the community war rooms should be used as avenues to discuss the title, role and scope of the chws. the ward councillors, however, should be at the helm of ensuring that carry-through occurs. the doh should ensure that the number of chws is in alignment with the ratio of chw to population 1:500 (singh & sachs 2013). when the apparent work load of the chws is addressed in this way, it may have a positive effect on the quality of service provision to the community. policy development and evaluation the training of the chws should be incorporated into the epwp training strategy, which will enable chws to obtain a formal qualification which is aligned to a national standard. this will also ensure that each chw receives the full training required, as opposed to ad-hoc sessions based upon time of acceptance into the chw programme. there should be a growth pathway for chws, to ensure that persons with experience can achieve higher levels of employment and thus also mentor the newer applicants in the programme. the status of the chws needs to be aligned to the south african labour laws regarding the basic conditions in the employment act. a clear decision must be taken on the status of employment, namely volunteer or full-time employee. there should be an investigation into the remuneration package received by the chw and its lack of alignment to the south african labour laws. further studies should include community perspectives and perspectives of the chw supervisors to obtain holistic information regarding the functioning of the programme. acknowledgements the authors thank the community health workers and ward councillors who participated in the study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced the writing of this article. authors’ contributions m.s.w. was responsible for the conceptualisation and execution of the study. p.g. and h.e.l. were supervisors of the project, assisted with drafting of the manuscript and critical review. references african national congress (anc), 1994, a national health plan for south africa, african national congress, johannesburg. anseel, f. & lievens, f., 2007, ‘the long-term impact of the feedback environment on job satisfaction: a field study in a belgian context’, applied psychology 56(2), 254–266. https://doi.org/10.1111/j.1464-0597.2006.00253.x bosch-capblanch, x. & garner, p., 2008, ‘primary health care supervision in developing countries’, tropical medicine and international health 13(3), 369–383. https://doi.org/10.1111/j.1365-3156.2008.02012.x creswell, j.w., 2014, a concise introduction to mixed methods research, sage, thousand oaks, ca. da silva, a.t.c. & menezes, p.r., 2008, ‘burnout syndrome and common 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swider, s.m., 2002, ‘outcome effectiveness of community health workers: an integrative literature review’, public health nursing 19(1), 11–20. https://doi.org/10.1046/j.1525-1446.2002.19003.x tripathy, j.p., goel, s. & kumar, a.m.v., 2016, ‘measuring and understanding motivation among community health workers in rural health facilities in india–a mixed method study’, bmc health services research 16(366), 1–10. https://doi.org/10.1186/s12913-016-1614-0 van ginneken, n., lewin, s. & berridge, v., 2010, ‘the emergence of community health worker programmes in the late apartheid era in south africa: an historical analysis’, social science and medicine 71(6), 1110–1118. https://doi.org/10.1016/j.socscimed.2010.06.009 world health organization (who), 2006, the world health report 2006: working together for health, world health organization, geneva. yin, r.k., 2014, case study research: design and methods. sage publications, thousand oaks, ca. footnotes 1. this refers to individuals who are unable to afford private healthcare insurance. 2. these are generalist services that are taken out to the community. they are an add-on service to phc clinics. locations are allocated according to which wards the clinic providing the outreach service is responsible for delivering services to. 3. this is a formal system used to describe qualifications. 4. these are members of the community, elected as members of the ward committee to represent the community at council meetings. 5. the sudden death of some brain cells due to lack of oxygen when the blood flow to the brain is impaired by blockage or rupture of an artery to the brain. a cva is also referred to as a stroke. 6. whoonga is a south african drug cocktail that contains illicit drugs and hiv antiretroviral (arv) medication. 7. war rooms are a government initiative indicating its desire to work with non-governmental organisations (ngos), communities and other sectors to ensure quality service delivery. this promise of action should improve integration and coordination, reduce duplication and inefficiencies, clearly define roles and utilise existing resources optimally to service people closer to where they live (mebalo 2014). abstract background learnerships and transport in south africa methodology transport as a barrier throughout the learnership conclusion acknowledgements references about the author(s) amanda e. gibberd department of transport, pretoria, south africa ntombizivumile hankwebe avivah occupations therapists, pretoria, south africa citation gibberd, a.e. & hankwebe, n., 2022, ‘transport experiences of people with disabilities during learnerships’, african journal of disability 11(0), a936. https://doi.org/10.4102/ajod.v11i0.936 opinion paper transport experiences of people with disabilities during learnerships amanda e. gibberd, ntombizivumile hankwebe received: 03 sept. 2021; accepted: 29 may 2022; published: 18 oct. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract transport is a known national barrier for people with disabilities in south africa. it is similarly identified as a barrier in learnerships and economic opportunity programmes. this article discusses the extent to which transport is a barrier during learnerships for students with disabilities. the department of transport administered an online evaluation questionnaire to a random sample of students with disabilities. results were coded in terms of ‘barriers to access’ and ‘barriers to participation’. the data were organised into themes. the collated evidence is discussed in this article. the findings demonstrated that transport barriers were present in different modes of transport and different parts of the travel chain. however, the findings also demonstrated the negative impact of transport on the learnership experience and economic opportunities. the findings indicated that inaccessible transport is an integral cause of learnership incompletion for students with disabilities, where the universal accessibility of both transport and the built environment are a prerequisite need. most students with disabilities reported that transport was not a barrier to learnership participation or that problems with transport could be resolved. nevertheless, it was one of the identified barriers that negatively affected learnership participation experiences. it was a significant barrier to learnership completion for students with the most severe experience of disability. the sample consisted of only 32 students and a high number of unspecified responses. evidence from other studies indicates that transport for all persons with disabilities remains a barrier warranting further examination, because public transport has remained inaccessible for over 23 years. further research is required to verify this study and to investigate learnership cost–benefit for all students. keywords: universally accessible transport; students with disabilities; learnerships; setas; economic opportunity. background this article describes the impact of transport on students with disabilities participating in learnerships. research on learnership experience identifies a range of barriers to access for students with disabilities participating in leanerships. transport is identified as a known barrier (dot 2020; mahembe 2016; mqikela 2015). over the past 23 years, transport has also been identified as a barrier by people with disabilities who are not students (dot 1999, 2020). the department of transport (dot) wished to explore how the barrier of transport affected students with disabilities who are participating in learnerships. learnerships and transport in south africa the south african national learnership programme has developed over several decades. at the end of apartheid in 1996, apprenticeships provided artisanal skills administered by 33 training boards. these became 23 sector education training authorities or (setas) and were streamlined to 21 by 2016 (department of higher education and training [dhet] 2011). the setas introduced ‘learnerships’ as a new method of knowledge acquisition designed for a post-school environment. learnerships were seen as a holistic skill development system for post-school students with low qualification levels (davies & farquharson 2004), rather than gaining an artisanal skill alone. in explaining the role of the setas, the department of higher education and training (dhet 2020a) defines setas as ‘skills development levy institutions that have a critical role to play in linking education and training institutions with the world of work (2020a:17)’. the setas collect skills levies from employers within a particular work sector, creating funds within the sector for relevant education and training. funds are then made available to employers through these training bodies for sector-relevant skills development and to students in the form of discretionary grants and bursaries so that they can attend courses relevant to a particular career path within the sector (dhet 2020a). employers of a certain size pay a percentage of their income for this process, as required by the skills development levies act (department of labour 1999) through the payroll tax. the aim of the setas, and therefore learnerships, is to deliver a national skills development programme that responds to industry needs (department of labour 1998). since 2010, the department of higher education has been responsible for seta oversight. the setas provide levels of qualification through the national qualification framework (nqf), resulting in the achievement of an ‘nqf level’ ranging from 1 to 10, with one being the lowest (south african qualifications authority [saqa] 2012). the national skills development plan (nsdp) guides skills programmes run by the setas through a national skills development strategy (nsds). people with disabilities are under-represented in employment, and national targets on employment for people with disabilities have not been met (department of women, youth, and people with disabilities [dwypwd] 2016). there are conflicting government views on the success of learnerships in achieving their aim of skills development and employment for people with disabilities. the national development plan or ndp (national planning commission [npc] 2011) is south africa’s national plan to overcome poverty, unemployment and inequality. the ndp identifies skills development as one of the three top priorities to grow jobs, capacity and a capable state (npc 2011:27). it states that ‘learnerships have facilitated entry to the labour market for unemployed people’ (npc 2011:323). yet in 2011, the nsds identified that the skills development element of learnerships for students with disabilities had failed (dhet 2011). despite this, the 2020 post-school education and training analysis (pset), a national planning commission document on skills development to 2030, does not address this failure (npc 2020). furthermore, the department for higher education and training report on skills supply and demand (dhet 2020b) fails to identify the problem at all. there is no mention of people with disabilities. they have simply now been omitted. transport, especially public transport, is an ongoing barrier for people with disabilities. complaints have been laid with the dot through the departmental complaints system (dot 2020). women have also laid complaints through the same system due to their experience of gender-based violence on public transport. existing national studies on students with disabilities in learnerships (mahembe 2016; mqikela 2015) similarly demonstrate barriers in various parts of the transport travel chain. mqikela (2015) and mahembe (2016) identified the following barriers. the proximity of transport to the workplace or training venue was a barrier for 30.0% of students with disabilities (mahembe 2016). an additional 17.7% found access to buildings from public transport problematic, including a 30 min – 45 min walk to the destination (mqikela 2015). this distance is simply too far for some students with disabilities (south african bureau of standards [sabs] 2011). almost half (44.3%) found onsite external routes inaccessible within the learnership environment (mahembe 2016). according to mahembe (2016), if buildings or transport were inaccessible, students with disabilities were left out of meetings or training. regardless of transport mode, both these studies show that students with disabilities leave home very early in the morning, use more than one mode to get to work on time and then get back home again, thus creating a longer working day than students without disabilities and a more expensive learnership experience (mahembe 2016; mqikela 2015). the extent of the effect of these transport-related barriers on learnership completion is not well documented, due to a lack of integrated data in foundational learnership studies. for instance, foundational studies on learnerships include no biographical information on disability, but only gender and race (kruss et al. 2014; rankin, roberts & schöer 2014). as with mqikela (2015) and mahembe (2016), these two studies provide no clear link between learnership completion and access to work or economic opportunity. whilst it is likely that the rankin et al. (2014) and kruss et al. (2014) studies covered students without disabilities alone, mqikela (2015) and mahembe (2016) categorically cover students with disabilities. the lack of a clear relationship between attending a learnership and accessing economic opportunities in both sets of studies signifies that learnerships may not achieve their stated aim. despite this, funding made available for learnership programmes has risen dramatically over 20 years (national treasury 2001, 2019). the complaints received by the dot between 2010 and 2020 from students enrolled for learnerships indicated that learners with disabilities were unable to complete learnerships due to transport barriers, thus supporting the findings in mqikela (2015) and mahembe (2016). students with disabilities wished to lay complaints about these transport services with the dot. however, the students who complained also indicated that they repeated learnerships because of incomplete qualifications and never entered employment. it was not clear from these complaints whether public transport was the only barrier to learnership completion and the lack of attainment of qualifications or if other barriers within the learnership also prevented learnership completion. methodology the dot provided institutional permission to implement the authors’ questionnaire as part of the department’s monitoring and evaluation mandate in 2020. the authors emailed evaluation questionnaires to a random sample of 55 learnership students with disabilities who used public transport to get to and from their learnerships. a response rate of 58% (32 students) was achieved. whilst it is acknowledged that this sample is too small to be generalised, the response rate indicates a desire for the dot to understand the situation of participating students. the evaluation questionnaire focused on two topic areas: the recruitment of learnership candidates and workplace experience during the learnership. it covered the subject of transport in both areas, as well as other subject matter relating to the learnership experience. the questionnaire included open and closed questions to obtain both qualitative and quantitative information. it covered the following information-set categories: biographical data, qualifications, barriers to access and barriers to participation, with transport-related questions for both the recruitment and workplace experience phase. reasonable accommodation, workplace modifications and learnership experience were included as separate categories. this article only reports on the transport-related responses. the authors coded and categorised the results into themes emerging from the responses to the evaluation questionnaire and then analysed these themes using a rights-based assessment framework. emergent themes (aside from transport in both the areas of learnership recruitment and workplace experience) were unresolved physical barriers to access, satisfaction with reasonable accommodation or in overcoming barriers and future employment concerns. responses on transport were compared to other barriers to learnership completion. limitations of the article evaluation questionnaire feedback is always limited, in that only those with complaints or concerns respond. this review is only based on the complaints to the dot. data from government sectors other than transport, such as that from corporate and health organisations, is not included. employers, seta staff and training providers were not consulted. onsite audits or interviews were not conducted. transport as a barrier throughout the learnership despite the limitations described, most students with disabilities did not identify transport as a barrier, as figure 1 demonstrates. figure 1: barriers to transport during the learnership, both during recruitment and in the workplace. (a) identification of transport barrier during recruitment, (b) experience of a transport barrier during entire learnership. whilst figure 1 shows that students with disabilities in learnerships who are unable to use transport are small in number and are a minority group, around 75% of this same group identified significant problems worth discussing regarding transport during the recruitment and workplace phases, which are illustrated in figure 2, through the resolution of complaints on transport and other barriers. figure 2: workplace barrier resolution on transport or other universal access factors. (a) recruitment: barrier resolution, (b) workplace barrier resolution. of the 32 students, 24 registered transport complaints during the recruitment phase, which is 75%. eight were satisfactorily resolved, and seven were unsatisfactorily resolved, which in both cases is about a third. a quarter of the sample cannot be accounted for due to the unspecified responses. during the workplace phase, 25 students (78%) registered transport complaints. of those complaints registered, 14 were satisfactorily resolved and seven were unsatisfactorily resolved. this means that around one-half were satisfactorily resolved and a third were not. a fifth of the sample cannot be accounted for due to unspecified responses. the neutral response is difficult to interpret. it could indicate satisfaction, or it could indicate resignation. if it indicates satisfaction, 70% of transport complaints were successfully resolved in the recruitment and workplace phases. if it indicates resignation, then 66% of complaints were unsatisfactorily resolved in the recruitment phase and 44% in the workplace phase. the high number of unspecified responses relative to the sample size means that the survey data is relatively incomplete and requires verification. during the recruitment phase, figure 2 shows that transport complaints were less satisfactorily dealt with than recruitment operations and access need-related complaints. in the workplace phase, modification and reasonable accommodation barrier resolution rates are higher than transport barrier resolution. nevertheless, it appears that most students with disabilities who experienced problems with transport were able to resolve them, although the extent of satisfactory resolution, including the neutral response, remains a concern to the dot. nationally, there is both historic and current difficulty meeting employment targets for people with disabilities (dwypwd 2016). this study showed that 84% of students with disabilities were likely to consider completing other learnerships, and half of these students would do so because of the unavailability of work. only 40% of the students with disabilities in this study had qualifications above matric, which affects employability. besides not having sufficient qualifications, 80% were taking a second or third learnership, and 99% were over 25 years old. one possibility is that the neutral response in this study indicates that transport is not a significant problem for people with disabilities attending learnerships, based on the frequency of the complaints, and the indication that most transport problems can be resolved. if transport is a resolvable problem for most students with disabilities, and the findings of this survey hold in a larger survey, then most of the barriers to qualification completion for students with disabilities can be found in the education or learnership system, and not transport. the problem of employment, likewise, can be due to skills or labour market-related issues, and not transport. alternatively, the neutral response should be interpreted as negative. if this is the case, transport remains a significant barrier to learnership completion for students with disabilities. whether or not the majority of students with disabilities experience an unresolved transport problem is immaterial in transport legislation. the severity of the problem remains the reason that complaints must be examined. the quotes below demonstrate that: ‘as an individual with a disability, the barrier that makes me miss good opportunities is always transport or accommodation. in most cases, we earn a stipend, not a salary, and the areas we get placed in are expensive. we cannot afford to pay for accommodation close to the workplace.’ (black; wheelchair user; balfour) ‘transport costs more than a stipend.’ (black, wheelchair user, johannesburg) ‘transport was the major problem that i had to deal with almost every day, and i nearly gave up on the learnership programme. sometimes i would be late because taxi drivers don’t appreciate assisting someone using a wheelchair.’ (black; wheelchair user, east london) ‘public transport is an issue, especially because i have a mobility disability. i find that after these learnerships, nothing is done for you; you go back home and remain unemployed.’ (black, wheelchair user, king william’s town) these survey quotes indicate the extent of multiple barriers to participation; the lack of accessible housing closer to areas of work where learnerships take place, the cost of transport for people with disabilities relative to income and the likelihood of unemployment on completion of the learnership. these quotes confirm dot complaints received from other people with disabilities who are not students on learnerships (dot 2020). the qualitative responses to the open questions in the evaluation questionnaire covered the unwillingness of public transport operators to assist students with disabilities, inaccessible mini-bus taxis and insufficient income to afford on-demand services such as uber, bolt or metered taxis, which could be easier to use. the survey findings showed a relationship between the lack of access to transport resulting in absenteeism and the lack of punctuality at work, which led to learnership incompletion. the department of women, youth and persons with disabilities (mqikela 2015) similarly concluded that the ‘barrier of transport’ was either caused by the distance of the destination from the origin, the distance of the transport stop to the venue, the inaccessibility of a particular transport mode or a combination of these factors (2015:25). the mahembe (2016) study cites the cost of transport as a reason for learnership incompletion (2016:33), without clarifying whether increased transport costs are due to the travel distance or the inaccessibility of the design of transport vehicles, but concluding that the learnership income is nevertheless insufficient. the quantitative information gathered during the authors’ survey supports the evidence in the qualitative data. for those negatively affected, regardless of the ‘stipend’ or income received from the learnership, public transport was either problematic or expensive or both. although 41% received a monthly amount of over r3000 and 48% received around half this amount at r1500.00 or less, 75% experienced problems with transport, in both the recruitment and workplace phases, because of a physical or operational barrier that caused transport to be inaccessible and because the length of the transport journey meant that it was too expensive to afford. the findings in figures 1 and 2 from the authors’ survey show that where transport is a problem to access, it can be resolved for most students on learnerships. nevertheless, these figures also show that doubling the amount of money that students receive is not sufficient to resolve transport barriers. the quotes from the qualitative data in the authors’ survey illustrate that the distance between where people live and their destinations creates a barrier caused by the sheer cost of transport relative to income, aside from the inaccessibility of a particular transport mode. furthermore, all of these factors inflate the cost of living for a student with a transport disability and decrease net income. multiple barriers to participation are evident. if both transport and learnerships were accessible, barriers in transport and urban planning as related to housing will still prevent some people with disabilities from completing their learnership. implications on the learnership experience the authors’ evaluation questionnaire showed that a third of the students with disabilities had unresolved transport problems. although this number does not constitute the majority, it is especially notable because of the inability of most employers to meet national employment and skills development targets for people with disabilities (dwypwd 2016). between two and four students were unable to complete their learnership because of a transport problem. this is also important because these are students with significant experiences of disability. their inability to gain employment because of public transport inaccessibility remains a likely outcome. the ‘barrier of transport’ was identified in moving south africa (dot 1999) for people with disabilities and other categories of passengers with identified access needs. the authors’ findings support the conclusion from published research (mahembe 2016; mqikela 2015) as well as findings in the dot complaints system (dot 2020) that insufficient progress on universally accessible transport has been made since 1999. over 23 years, public transport remains inaccessible to everyone. there is a lack of acknowledgement of students with disabilities in recent nationally issued reports on learnership experience (dhet 2020b; npc 2020). the authors wondered if any learnership barriers experienced by students with disabilities are acknowledged in all learnership research projects, both in terms of reference issued for these studies, and in learnership evaluation programmes. the lack of acknowledgement of people with disabilities in published reports creates a gap in the evaluation of transport as a barrier. it is not clear if by removing the barrier to transport and providing universally accessible transport, learnership completion and economic opportunity for people with disabilities will be achieved. if barriers within learnerships remain, universally accessible transport will achieve very little. the dot began to address inaccessible transport as a legacy project of the 2010 world cuptm (dot 2009). the identified integrated public transport network (iptn) municipalities have received a special allocation of between 5 and 6 billion rands annually, from 2010 to 2020, through a dedicated conditional grant (national treasury 2010–2020). this has resulted in accessible transport systems in only six out of 13 iptns, covering only a fraction of each municipality. complaints received on new municipal public transport systems continue to highlight significant problems with their inaccessibility. currently there is no national programme to upgrade existing services, although universally accessible planning for transport is already legally required as a minimum standard (dot 2016). without a national change in the approach to universal design in both transport and urban planning as well as transport service operations, barriers to transport will likely remain (gibberd 2021). implications beyond the learnership experience despite the low post-learnership employment levels described in existing studies, students with disabilities continue to believe that post-learnership employment is attainable. the authors’ data support this finding; most students who participated in the survey (about 75%) attend learnerships to achieve employment. the authors’ survey shows a concern from students about future barriers to work aside from transport. these barriers include inaccessible built environments and inaccessible workplace information. the students’ concerns were that these barriers were not being addressed. with 77% of the survey participants indicating a concern that future barriers to work will not be dealt with, most students with disabilities believe that their access needs will not be identified and that reasonable accommodation will not be implemented. their future beliefs relate to their current experience. in the authors’ study, 94% of students identified an access need in either the recruitment or the workplace phase of the learnership. figure 2 shows that in transport, at least 40% of those barriers remained unresolved. other results showed that 37.5% of students were less than satisfied with the reasonable accommodation measures made. conclusion the results of the authors’ evaluation questionnaire found that inaccessible transport is a significant barrier to learnership completion, especially for students with the most severe experience of disability. transport was found to be a barrier due to its inaccessible planning, design, operation and cost of transport journeys. the lack of access to transport appeared to undermine students with disabilities, leading to unpleasant and demoralising learnership experiences or learnership incompletion. transport as a barrier to access for people with disabilities and others with universal access needs was identified in early research over two decades ago and remains largely unaddressed (dot 1999, 2020). secondly, the results of the authors’ evaluation questionnaire indicate other post-learnership employment concerns amongst people with disabilities, aside from transport. this finding is particularly problematic, principally for the dot. transport is a barrier for students with disabilities. however, if transport became universally accessible, the ‘disability of unemployment’ remains. it is interesting that foundational studies on learnerships do not identify ‘disability’ in biographical information (kruss et al. 2014; rankin et al. 2014) or the extensive barriers that people with disabilities face. disability studies are separately available; nevertheless, people with disabilities have not been included in the mainstream as national legislation requires, neither in transport nor in studies on learnership experience. also in need of reform, are the current learnership and seta structures; which appear not to bridge the post-school employment gap as the national development plan claims, particularly for people with disabilities but also for those without, and to not achieve it at a substantial cost. acknowledgements the authors would like to acknowledge their appreciation to students with disabilities for completing the questionnaire. in addition, the authors express their appreciation for the support of the editing staff at stellenbosch university in preparing this article. competing interests the authors declare no competing interests or financial gain. authors’ contributions this article was prepared jointly by the authors. ethical considerations the department of transport, universal design and universal access directorate provided approval for this study, under the complaints system run by the directorate. funding information the authors received no financial support for the research, authorship, and/or publication of this article. data availability the data that support the findings of this study are available on request from the corresponding author, a.e.g. the data are not publicly available due to [restrictions, e.g. their containing information that could compromise the privacy of research participants]. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references davies, t. & farquharson, f., 2004, ‘the challenge of managing learnerships effectively: lessons from the field’, services seta research journal 3(2), 31–36, viewed 13 august 2021, from https://www.tandfonline.com/doi/pdf/10.1080/13636820400200253 department of higher education and training (dhet), 2011, national skills development strategy iii, final draft, viewed 16 october 2020, from https://www.nationalskillsauthority.org.za/wp-content/uploads/2015/11/nsdsiii.pdf. department of higher education and training (dhet), 2020a, dhet annual performance plan 2020, viewed 23 october 2020, from https://www.dhet.gov.za/siteassets/dhet%20annual%20performance%20plan%202020.pdf. department of higher education and training (dhet), 2020b, the report on skills supply and demand in south africa, viewed 23 october 2020, from https://www.dhet.gov.za/planning%20monitoring%20and%20evaluation%20coordination/report%20on%20skills%20supply%20and%20demand%20in%20south%20africa%20-%202022%20%281%29.pdf. department of labour (dol), 1998, skills development act, no. 97 of 1998, department of higher education and training, pretoria. department of labour (dol), 1999, skills development levies act, no. 9 of 1999, department of labour, pretoria. department of transport (dot), 1999, moving south africa, department of transport, pretoria. department of transport (dot), 2009, implementation strategy to guide the provision of accessible public transport systems in south africa. (accessible public transport strategy), department of transport, pretoria. department of transport (dot), 2016, minimum requirements for the preparation of integrated transport plans, (proclamation no. 881, 2016, government gazette: 40174_29–7, regulation gazette no. 40174), department of transport, pretoria. department of transport (dot), 2020, record of complaints from passengers with disabilities and other universal access passengers: 2010–2020, department of transport, pretoria. department of women, youth, and people with disabilities (dwypwd), 2016, white paper on the rights of persons with disabilities and the implementation matrix (wprpd), department of women, youth, and people with disabilities, government gazette, no. 39792, viewed 23 october 2020, from https://www.gov.za/sites/default/files/gcisdocument/201603/39792gon230.pdf. gibberd, a., 2021, universally accessible public transport systems: experiences with implementation in the thirteen integrated public transport network municipalities in south africa, the university of pretoria, pretoria. kruss, g., wildschut, a., janse van rensburg, d., visser, m., haupt, g. & roodt, j., 2014, learnerships and apprenticeships: key mechanisms for skills development and capacity building in south africa, viewed 23 october 2020, from http://repository.hsrc.ac.za/handle/20.500.11910/2460. mahembe, e., 2016, impact evaluation of the south african disability development trust project (saddt), final evaluation draft report, version 2, wholesale and retail seta, viewed from 23 october 2020, from https://www.wrseta.org.za/sites/default/files/2020-01/saddt_final_impact_assessment_research_report.pdf. mqikela, n., 2015, experiences of persons with disabilities in learnerships, higher education institutions and public entities, a pilot study, department of women, youth and persons with disabilities, viewed 23 october 2020, from http://www.women.gov.za/images/experiences-of-persons-with-disabilities-in-learnerships-higher-education-institutions-and-public-entities--a-pilot-study.pdf. national planning commission (npc), 2011, national development plan: vision for 2030, national planning commission, viewed 28 january 2020, from https://www.gov.za/sites/default/files/gcis_document/201409/devplan2.pdf. national planning commission (npc), 2020, post school education and training (pset) trends towards 2030, viewed 23 october 2020, from https://www.nationalplanningcommission.org.za/assets/documents/post%20school%20education%20and%20training%20(pset)%20trends%20towards%202030.pdf. national treasury, 2001, vote 14. education, viewed 23 october 2020, from http://www.treasury.gov.za/documents/national%20budget/2001/ene/vote_14.pdf. national treasury, 2010–2020, division of revenue bill, national treasury, pretoria. national treasury, 2019, vote15. higher education and training, viewed 23 october 2020, from http://www.treasury.gov.za/documents/national%20budget/2019/ene/vote%2015%20higher%20education%20and%20training.pdf. rankin, n., roberts, g. & schöer, v., 2014, the success of learnerships? lessons from south africa’s training and education programme (no. 2014/068), wider working paper, viewed 23 october 2020, from https://www.econstor.eu/handle/10419/97124. south african bureau of standards (sabs), 2011, facilities for persons with disabilities, sans 10400-s, 3rd edn., south african bureau of standards, pretoria. south african qualifications authority (saqa), 2012, level descriptors for the south african national qualifications framework, viewed 12 july 2021, from https://www.saqa.org.za/sites/default/files/2019-11/level_descriptors.pdf. abstract introduction research design and methodology results discussion conclusion acknowledgements references about the author(s) lotto charles paul dominsiano division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa surona visagie division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation dominsiano, l.c.p. & visagie, s., 2025, ‘quality of life experienced by south sudanese lower limb prosthetic users after rehabilitation’, african journal of disability 14(0), a1671. https://doi.org/10.4102/ajod.v14i0.1671 original research quality of life experienced by south sudanese lower limb prosthetic users after rehabilitation lotto charles paul dominsiano, surona visagie received: 20 jan. 2025; accepted: 02 june 2025; published: 16 july 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: prosthetic rehabilitation modifies functional limitations and psychological challenges caused by amputations, as it helps to restore mobility and body image. a physical rehabilitation centre in juba, south sudan, has been providing prosthetic rehabilitation since 2009 in this conflict torn part of the world. objectives: to determine the quality of life (qol) of persons with unilateral transfemoral or transtibial amputations who have received prosthetic rehabilitation in juba, south sudan. method: a cross-sectional survey was conducted with 40 participants, identified through consecutive sampling. data were collected through face-to-face interviews using the world health organization quality of life brief version (whoqol-bref)questionnaire. descriptive analysis was conducted, and relationships between qol and participants’ demographic and medical information were explored through the t-test and analysis of variance (normally distributed data) and the mann–whitney u and kruskal–wallace tests (skewed data). results: mean domain scores were physical (74.28%), psychological (72.59%), social (71.40%) and environmental (58.81%). overall qol and overall health satisfaction had mean scores of 4.1/5 and 3.975/5. marital status (0.049) and occupation (0.022) played a significant role in psychological qol. no other demographic or medical variable had a significant effect on overall or domain qol scores. women were significantly more satisfied with their health than men (0.046). conclusion: overall, participants had high qol scores. this might be because of prosthetic rehabilitation. lower scores in the environmental domain might be because of poverty and the continuous danger of armed conflict. contribution: even when using basic components, prosthetic rehabilitation can significantly improve qol after lower limb amputation. keywords: amputation; health status; quality of life; physical; psychological; social; environmental; prostheses. introduction quality of life (qol) is defined as an individual’s perception of their position in life and perceived well-being in the context of the culture and value system in which they live and in relation to their goals, expectations, standards and concerns (calabrese et al. 2023; deans, mcfadyen & rowe 2008). general qol is multifaceted and encompasses physical aspects such as pain, mobility and selfcare, psychological aspects such as anxiety and depression, social aspects such as relationships and environmental aspects such as access to services and overarching concepts such as life roles (ernstsson et al. 2022). health-related qol (hqol) focuses specifically on health properties (calabrese et al. 2023). the focus of this study was in general qol. as summarised by calabrese et al. (2023) in a recent literature review, an amputation has a negative effect on qol. these authors further found that qol improves over time after the amputation (calabrese et al. 2023). however, it is unclear whether the improvement reaches pre-amputation levels of qol. studies from asia and africa showed that an amputation can have a negative effect on the physical, psychological, social and environmental domains of qol (adegoke et al. 2012; deepak et al. 2023; nizamli 2020; razak et al. 2016; shankar et al. 2020; zaheer et al. 2020). physical qol is often affected most severely as the amputation directly impacts mobility and physical functioning (adegoke et al. 2012; deepak et al. 2023; razak et al. 2016; shankar et al. 2020; zaheer et al. 2020). mean physical qol scores varied between 43.37 in a study conducted in syria with 65 men who had lower limb amputations because of war injuries (nizamli 2020) and 61.6 among 37 malaysians with lower limb amputations because of various causes (razak et al. 2016). conversely, all studies (adegoke et al. 2012; deepak et al. 2023; shankar et al. 2020; zaheer et al. 2020), except for two (nizamli 2020; razak et al. 2016), found social qol to be the least affected by amputation. variables that influence quality of life after amputation in african studies authors agree that more proximal levels of amputation (calabrese et al. 2023; migaou et al. 2019) and non-traumatic amputation (migaou et al. 2019) significantly reduce qol. the use of a prosthesis (adegoke et al. 2012; chunteng et al. 2022; enweluzo et al. 2023; hando et al. 2023; von kaeppler et al. 2021) and the absence of stump pain or phantom limb pain (hando et al. 2023) have a positive effect on qol after amputation. regarding demographics, african research showed conflicting findings. adegoke et al. (2012) showed that male sex had a significant positive influence on physical and social qol among nigerians with lower limb amputations. however, also in nigeria, enweluzo et al. (2023) found that women had significantly better physical and psychological qol than men. chunteng et al. (2022) found that sex did not influence qol after amputation. according to hando et al. (2023), tertiary education and employment positively influenced qol. however, chunteng et al. (2022) found that education, occupation and income status had no influence on qol quality of life of persons with amputation has been explored in several african settings including parts of cameroon (chunteng et al. 2022), nigeria (adegoke et al. 2012; enweluzo et al. 2023), tanzania (hando et al. 2023) and tunisia (migaou et al. 2019). however, most of these studies focused on hqol and on determining variables that influence qol or hqol. none of them was done in south sudan, a war-torn country, and none compared the qol of persons with amputation to the qol of the general populations. context: south sudan and juba rehabilitation centre it is unknown how many persons live with limb loss in south sudan. however, according to the international committee of the red cross (icrc), 1894 persons received lower limb prostheses between july 2022 and july 2023 in south sudan. out of this number, 1800 received transtibial prostheses and 94 received transfemoral prostheses. in south sudan, lower limb amputation is commonly caused by gunshot wounds, landmines, snake and animal bites, road traffic accidents (rtas) and diabetes (rohwerder 2018). with a long civil war, the prevalence of lower limb amputation has increased in south sudan, leading to higher demand for prosthetic services. a physical rehabilitation centre, one of three centres in the country that provide prosthetic rehabilitation, was established in juba in january 2009 by the government of south sudan. the aim of the centre is to provide rehabilitation services to wounded soldiers, particularly those who have lost limbs. the centre is supported by the icrc. between 20 and 30 persons with transfemoral or transtibial amputation are admitted to the centre per month. prosthetic components used at the rehabilitation centre are basic in nature. all transfemoral and transtibial prostheses are manufactured with a solid ankle cushion heel (sach) foot. transtibial prostheses have a patella tendon bearing, or a patella tendon bearing supra-condylar socket, or, if the stump is very short, a thigh corset. transfemoral prostheses have a single axis knee, quadrilateral or ischium containment socket and belt and sling suspension (see figure 1). figure 1: images of the prostheses and components used. no studies focusing on the qol of persons with lower limb amputations using prostheses have been done at the rehabilitation centre in juba since its establishment. without this knowledge, service providers do not know whether their services are effective in improving user qol. they also do not know which variables increase or decrease qol. this knowledge might help to optimise services and thus improve qol of future users. thus, this study aimed to determine the qol of persons with unilateral transfemoral or transtibial amputations who have received prosthetic rehabilitation in juba, south sudan. the research question was, ‘what is the experienced qol of persons who have received transfemoral or transtibial prosthetic rehabilitation in south sudan?’ the main study hypothesis stated that the qol of persons who have received transfemoral or transtibial prosthetic rehabilitation in south sudan was poor. a secondary hypothesis stated that demographic and amputation-related variables (age, gender, level of education, marital status, occupation, cause of amputation, level of amputation, use of handheld assistive devices and stump length) did not influence qol. a final hypothesis stated that qol of persons who have received transfemoral or transtibial prosthetic rehabilitation in south sudan will be lower than the qol of general populations. research design and methodology design: a quantitative, descriptive, cross-sectional design was used to collect data at one point in time over a short time frame (wang & chang 2020). population, sampling and recruitment: the study population included all persons with unilateral lower limb amputations who have received prosthetic rehabilitation at the study setting. the total number was unknown. to be included, persons had to be 18 years or older, amputated either transfemoral or transtibial, have received the prosthesis more than 3 months ago (zidarov, swaine & gauthier-gagnon 2009 found that amputees performed significantly more activities with their prosthetics at 3 months than at discharge), and have used their prosthesis. those who have stopped using the prosthesis were excluded as prosthetic use can influence qol (wurdeman, stevens & campbell 2018). a total of 40 participants were sampled using consecutive sampling because it controls sampling bias better than other non-probability sampling methods by including all available persons who adhere to the inclusion criteria (thewes et al. 2018). no sample size calculation was done because the size of the study population was not known. while it was known how many persons received prosthesis per month, there was no way to determine how many would visit for follow-up services during the data collection period. o’leary (2017) has indicated that a sample of 30 or more is sufficient for the analysis of quantitative data. similar studies have been done with 37 (razak et al. 2016), 47 (adegoke et al. 2012) and 50 (kalsoom, amjad & bairam 2018) participants. the primary author identified inpatients and outpatients who adhered to the inclusion criteria, and who received prosthetic rehabilitation at the study setting, with the assistance of a social worker. the primary author approached potential participants and shared information about the purpose of the research and their role in it with them. an interpreter assisted where participants were not fluent in english or arabic (3/40). the primary author read the question, which was then translated to the participant by the interpreter. the participant answered, and the interpreter translated the answer to the primary author. data collection: data were collected with the world health organization quality of life brief version (whoqol-bref) questionnaire. the whoqol-bref is a validated reliable (who 1998) instrument that has been used widely in population-based studies as well as in populations of persons with lower limb amputations (calabrese et al. 2023). according to calabrese et al. (2023), the whoqol-bref is the survey tool most used to explore qol or hqol among persons with amputation. specific tools that focus on measuring qol in amputee populations, like the orthotic and prosthetic users survey – health qol (jarl et al. 2012), and measures that look at hqol, such as the short form health survey 36 (sf-36), are available. however, the whoqol-bref was used in this study rather than any of the other tools as the focus was on general qol, not hqol, and findings were compared to population-based norms. the whoqol-bref (who 1998) was developed by the who for cross-cultural comparison of qol. it can be downloaded for free from https://www.who.int/tools/whoqol/whoqol-bref. it provides a valid, accurate and convenient assessment of qol and can be completed within a short period of time (who 1998). the whoqol-bref questionnaire contains 26 items consisting of four domains: physical health (seven items related to pain, health care needs, energy, mobility, sleep, daily activities and work) psychological health (six items related to life enjoyment, positive attitudes, concentration, body image, self-esteem and negative feelings) social relationship (three items related to personal relationships, sex life and support) environmental health (eight items related to safety, healthy environment, finances, information access, leisure activities, living place, access to health care and transport) and two general items, that is, general qol and general health (who 1998). the score of each individual item ranges from 1 to 5 on a likert scale. higher scores denote better qol. questions on cause and level of amputation, length of time having a prosthesis and using additional handheld assistive devices were added to the demographic questions of the whoqol-bref for this study. the whoqol-bref questionnaire was completed during face-to-face structured interviews. for the three participants who did not understand arabic or english, the two languages in which the survey was available, the primary author read the questions in english, and an interpreter translated them into a language that the participant was well versed in. it took 15 min – 20 min to complete the questions. data collection was done between march and june 2024. data management and analysis: there were no missing data. all data were coded and entered into excel. in accordance with the whoqol-bref scoring guidelines, the negatively phrased items were reversed before coding. the data were nominal and ordinal categorical, as well as ratio. nominal data included gender, level of amputation, residual limb length and occupation. most data were ordinal because survey responses were scored on a 5-point likert scale. these scores were used to calculate domain scores that were converted to percentages. domain scores, together with scores on age and length of time using a prosthesis, provided numerical data. nominal and ordinal data were summarised in percentages and modes. the qol item and domain scores were descriptively analysed for central tendency and spread through means and standard deviations. calculation of qol domain scores was done according to the provided guidelines (https://www.who.int/tools/whoqol/whoqol-bref). domain scores were computed and transferred to a score out of 100 to compare different domains with each other and for comparison with other studies, as per the whoqol user manual instructions. the mean score (raw domain score) in each domain was determined by adding the scores of the questions relevant to that domain and dividing it by the number of items in the domain. mean scores were multiplied by four to make them comparable to whoqol-100 scores. they were then transformed to a 0–100 scale by subtracting four from the whoqol-100 score and multiplying the answer with 100/16. further analysis was done to determine if there were any significant relationships between demographic and medical information, such as age or level of amputation, in relation to overall and domain qol scores. the shapiro–wilk test showed that data for the physical and environmental domains were normally distributed. thus, inferential analysis was done with the t-test to compare the means between two groups (gender, level of amputation and use of handheld devices) and analysis of variance (anova) to compare the means across three or more groups (level of education, marital status, occupation, stump length) for these two domains. data for the psychological and social domains were not normally distributed, and further analysis was done with the mann–whitney u test (comparison between two groups) and the kruskal–wallace test (comparison between three and more groups). alpha < 0.05 was deemed statistically significant. statistical package for the social sciences (spss) version 29 was used to analyse data with the support of a statistician from the stellenbosch university biostatistics centre. ethical considerations approval: ethical approval was received from the stellenbosch university health research ethics committee (s23/10/256). the ministry of health and research ethics and review board (moh-rerb a-77/2023) in south sudan provided permission to do the study in the country. permission was also obtained from the manager of the rehabilitation centre. respect for persons: both verbal and written informed consent were sought. translators were utilised as the participants were from diverse communities and spoke different languages. no participant withdrew from the study. familiarity with the primary author: the primary author knew some of the participants. these participants were given the same respect, explanation and opportunity to refuse as those who did not know him. the primary author explained that the prior relationship should not influence their choice to participate or the answers they provided. beneficence and non-maleficence: the research did not pose a risk of physical harm. no participant experienced emotional distress during data collection. the information gathered was used for research purposes only. data were kept confidential and only shared with the study supervisor and statistician. paper copies of completed surveys are stored in a locked cupboard. the electronic spreadsheet copy was saved on a computer and backed up on an external hard disk. both were locked with a password. the data will be kept for 5 years, after which it will be destroyed. all participants were informed that they would not be paid to participate in the study; however, they received money for transport and tea during the interview. distributive justice: all participants were treated with respect and dignity, irrespective of ethnic, religious or political affiliation. results demographic details more males (27) compared to females (13) participated in the study, with a percentage of 67.5 versus 32.5. the mean age was 42.3 years (standard deviation [s.d.] 13.6). the minimum age of the participants was 19, and the maximum was 69. table 1 shows that 42.5% (17/40) of the participants attended primary school, while 7.5% (3) achieved tertiary education, and 27.5% (11) did not have any formal education. the majority (82.5%, 33) of the participants were married. most of the participants (65%, 26) were unskilled labourers. of the 13 women participants, 84.6% (11) were unskilled, and of the 27 males, 55.6% (15) were unskilled. the minimum and maximum years of wearing prosthesis were 0.3 and 32, respectively. participants had been using their prostheses for a mean period of 13.7 (s.d. 9.5) years. table 1: distribution of demographic and amputation-related information of the study participants. amputation-related results trauma related to gunshot wounds was the major cause of amputation among the participants, accounting for 55.0% (22) and occurred throughout the age groups. this was followed by land mine injuries at 17.5% (7). when rta and animal bites are added, 85.0% (34) of the amputations were done because of trauma. transtibial amputation (62.5%, 25) was more common than transfemoral amputation (37.5%, 15). no other level of major lower limb amputation was recorded during the study. in most instances, the residual limb length was medium (47.5%, 19). most of the participants (75.0 %, 29) did not need additional handheld assistive devices such as crutches or walking frames. landmine injuries were more common among persons older than 42 years, while vascular causes and animal bites were more common in the younger age groups (table 2). table 2: causes of amputation according to age category. quality of life results three domains, that is, physical (74.28), psychological (72.59) and social (71.40), had a mean score above 70. the environmental domain had a much lower mean score of 58.81. at 75, the social domain showed the widest range of scores. overall qol and overall health satisfaction had mean scores of 4.1 and 3.975, respectively (table 3). table 3: descriptive analysis of quality of life domain scores. table 4 shows the four questions with the highest and the lowest overall scores. the lowest scoring question, and the only question scoring below 100/200, was about the availability of money to meet needs (76/200). (the highest possible score is 5 when multiplied by total number of participants [40] gives 200). table 4: descriptive analysis of individual world health organization quality of life bref questions with the highest and lowest overall scores. comparative analysis unskilled occupations (0.022) led to significantly lower qol scores in the psychological domain. being married (0.049) showed a slight positive impact on psychological qol. none of the other demographic variables had a significant impact on overall or domain qol scores. however, women were significantly more satisfied with their health than men (0.046). five (18.5%) men were not satisfied with their health versus only one (8.3%) woman. persons with unskilled occupations (0.027) were significantly less satisfied with their health than those in other occupational categories (table 5). table 5: a comparison between independent variables, quality of life domain, overall quality of life, and health satisfaction scores using the t-test, analysis of variance, mann–whitney u test and kruskal–wallace test as described under data analysis. discussion the main study hypothesis was rejected as the qol of persons who have received transfemoral or transtibial prosthetic rehabilitation in south sudan was good rather than poor. quality of life scores were especially high in the physical, psychological and social domains. the environmental domain had a much lower mean score. the secondary hypothesis was accepted except for occupation and marital status, which had a significant impact on psychological domain qol scores. the final hypothesis was rejected as the qol of persons who have received transfemoral or transtibial prosthetic rehabilitation in south sudan was similar to the qol of general populations. quality of life: at 74.28, the mean physical domain score was higher than the mean scores of the other three domains. this is in contrast with other studies that found physical domain scores to be lower than scores of other domains (adegoke et al. 2012; deepak et al. 2023; hando et al. 2023; razak et al. 2016; shankar et al. 2020; zaheer et al. 2020), as one might expect from a condition that impacts mobility directly. most participants reported no pain during physical activities, no need for medical treatment to function in their daily lives, and satisfaction with sleep, work and mobility, all adding to high physical domain scores. the absence of pain or pain management (banskota et al. 2024; hando et al. 2023), satisfaction with sleep (razak et al. 2016), satisfaction with ability to work (razak et al. 2016) and being mobile (hando et al. 2023) are important in improving qol after amputation. furthermore, not all participants in the previous studies had a prosthesis. this might further explain the difference in scores as prostheses are associated with increased qol after amputation (adegoke et al. 2012; chunteng et al. 2022; enweluzo et al. 2023; hando et al. 2023; von kaeppler et al. 2021). the environmental domain mean score was at 58.81 around 15% lower than mean scores for the other three domains. nizamli (2020) also found the lowest mean score in the environmental domain (39.65) in a study conducted in syria. both this study and the study by nizamli (2020) were conducted in war-torn settings. the continuous conflict, with the presence of soldiers, as well as the risk of skirmishes and landmines, makes the environment unsafe (rohwerder 2018). individuals might hesitate to move about their community and perform activities outside the house as they would like to, thus reducing their environmental qol. the low score may also be related to poor attitudes of the community towards persons with lower limb amputations, poor infrastructure and poor transport systems (rohwerder 2018). most participants reported that they could not access the information that they need in their daily lives, the physical environment was not friendly, they did not have much opportunity for leisure time, they were not satisfied with transport and most of them did not have enough money to meet their needs. the financial situation might be because most of the participants did not have secondary or tertiary education; as a result, they struggled to access skilled jobs. the findings that overall qol (4.10) and overall satisfaction with health (3.98) scores were good suggest that participants adapted to life with an amputation and prosthesis to the point where it did not have much of an effect on their qol and health satisfaction. the overall qol scores were higher than findings by adegoke et al. (2012) on the qol of nigerians with lower limb amputations (3.91) and nizamli (2020) on the qol of syrians with war-related lower limb amputations. the high scores in this study might be related to an active lifestyle and the availability of a well-equipped rehabilitation centre, which provided not only assistive devices but also comprehensive training and psychosocial support through counselling, as rehabilitation has been associated with improved qol after amputation (enweluzo et al. 2023). prosthetic and rehabilitation services were provided free of charge by the government under the ministry of gender, child and social welfare with support from the icrc in south sudan. influence of demographic and amputation-related variables on quality of life the ratio of male to female participants was around 2:1. the higher prevalence of amputation among men is common globally (bernatchez, mayo & kayssi 2021), and in africa (talona et al. 2016; tchankoni et al. 2024; ukibe et al. 2016), but the reasons for this are less clear. in this study, the higher number of men, and the high rates of gunshot and landmine injuries as a cause of amputation, might be because of the long civil war, known as the any-anya i rebellion from 1955 to 1972, followed by the any-anya ii rebellion from 1983 to january 2005 (ensor 2012, 2013). men, including young boys, were recruited into the sudan people’s liberation army, also known as the red army (ensor 2012), while women were left to take care of the home and children. mlambo, mpanza and mlambo (2019), in their study about armed conflict and the increasing use of child soldiers in the central african republic, democratic republic of congo and south sudan, found that child soldiers were common in those countries. cherwon (2014) also found that uganda and south sudan were recruiting young children into the army. this might help to explain the finding that up to 36% of persons with gunshot trauma and 40% with landmine injuries that caused the amputation were among the age group ≥ 50 years, that is, the group that would have been young men or children at the time of the rebellions. vascular disease and diabetes mellitus are the leading causes of amputation in large parts of the world (chalya et al. 2012; ernstsson et al. 2022; o’keeffe & rout 2019), including parts of africa (limakatso et al. 2024; mohammed & shebl 2014). however, the picture differs in war-torn areas. over 70% of persons who have received rehabilitation after lower limb amputation from the icrc in afghanistan, cambodia, iraq, myanmar, and sudan suffered an amputation because of trauma, of which 48.6% were conflict-related (barth et al. 2021). hawari et al. (2017) also noted that industrial accidents, rta and war-related injuries are leading causes of amputation in many low-income countries. in conflict situations, amputation is often the only treatment option available because of limited resources and personnel (shankar et al. 2020), severity of the injury and the presence of ischaemic, infected or necrotic tissue (razak et al. 2016). this study also found that most participants were not educated or received little education, particularly females, of whom none achieved tertiary education, and only two had secondary education. a study by buckinx et al. (2021) found that out of 490 south sudanese participants, 64% of females had never been to school compared to 38% of males. the gender gap widens when it comes to secondary education. this is partly because primary schools are available in communities, but secondary schools are less common and often far away. parents are not willing to let their daughter walk long distances to school because of safety concerns and in fear of rape, which may result in an unwanted pregnancy (oxfam 2017). furthermore, girls sometimes did not attend school because of early marriage (oxfam 2017). culturally, young girls are married off by their families to get the bride price as a source of wealth (aleu, ayii & amos 2024). aleu et al. (2024) found that child marriage was widely practiced in south sudan, with 52% of south sudanese girls getting married before the age of 18. child marriage is related to poverty and illiteracy. the finding that males did not attend school or only attended primary school might also be because of the conflict in the country with school-aged boys being recruited into the army (ensor 2012, 2013). marital status might have influenced psychological qol positively because a spouse can provide emotional support, including motivation and encouragement, which can be important to reduce negative feelings, anxiety, depression and loneliness. in addition, a spouse can add to the household income reducing stress about providing for basic needs. unskilled occupations were associated with decreased psychological qol and decreased health status. this might be because unskilled jobs often involve repetitive activities with little or no exposure to different tasks or environments, hence no opportunity for career growth. this can lead to feelings of frustration and stress, which affect the psychological well-being of an individual. unskilled jobs are low paid, and income might not meet the cost of basic needs. according to deepak et al. (2023), people with better financial stability have access to high quality services including access to essential basics to cater for themselves and the family. women were more satisfied with their health than men; this might be because women usually share their thoughts and feelings more openly than men who might be more reticent. women might also be more involved in social activities in the community, which can encourage a sense of well-being and reduce feelings of loneliness and frustration. the finding agrees with that of enweluzo et al. (2013) but is contrary to that of adegoke et al. (2012), who found that male participants had significantly higher overall health scores (0.012) than their female counterparts. qol of study participants compared to that of general populations: the mean domain scores found in this study were more comparable with those of the population-based studies presented than studies conducted with persons with amputations. mean scores for the four domains in population-based studies across victoria, australia (hawthorne, herrman & murphy 2006), kuwait (ohaeri, awadalla & gado 2009), france (baumann et al. 2010), brazil (cruz et al. 2011), portugal (patrício et al. 2014), indonesia, (purba et al. 2018), south east australia (west et al. 2023) and mongolia (bat-erdene et al. 2023) are 66.65 (physical domain), 69.28 (psychological domain), 71.39 (social domain) and 67.5 (environmental domain). thus, this study scores are higher in the physical and psychological domains, similar in the social domain and lower in the environmental domain. the scores might be comparable with normative data because the prosthesis supports function to a point where users can continue with their lives as before the amputation as described by buetow, martínez-martín and mccormack (2019). however, this is an area that must be further researched. strengths, weaknesses and rigour the primary author previously provided physiotherapy to some of the participants. they might have been hesitant to share negative feelings with him. he assured participants that the information was to gain a better understanding and that sharing negative information would not put them in a poor light with him or influence their relationship with him. the whoqol-bref was tested in 23 countries with diverse cultures and different socioeconomic development levels. it was found valid and reliable in assessing qol (who 1998). however, it was not tested in south sudan. to further ensure reliability, the primary author ensured that participants understood each question and used an arabic version where relevant. but some meaning might have been lost where interpreters were used. not calculating sample size and the low number of participants negatively influence the generalisability of the results. finally, the length of use of the prostheses was not considered in qol scores. living longer with an amputation and longer use of a prosthesis can negate an initial reduction of qol (calabrese et al. 2023). data were collected at one point in time and completed within a short time frame. questionnaires were carefully checked to make sure that all questions were answered. consecutive sampling reduced bias as it guided inclusion of all available population members (thewes et al. 2018). recommendations clinical relevance: the results revealed good qol; therefore, the stakeholders who are involved with the rehabilitation of persons with lower limb amputations in the setting should continue their rehabilitation. more attention should be given to the psychological status and overall health of those in unskilled occupations during rehabilitation. it is also important to increase awareness among the government and the general population that aspects of the physical environment must be improved. for further research: a prospective study is recommended to determine whether there are changes in qol between the time of admission, at discharge and after follow-up in the community, which would provide more information on qol before and after prosthetic provision. a cohort study in which the qol of persons with amputation without prosthesis, persons with amputation with prosthesis and persons without amputation living in the same communities is compared. studies exploring the role of prostheses in normalising function and qol to a point that is comparable to normative data on qol. conclusion this study tells us that participants who have received a transfemoral or transtibial prosthesis at the study centre had good qol in the physical, psychological and social domains after prosthetic rehabilitation. although the environmental domain scored lower, qol in this domain was still moderate. the availability of a well-equipped rehabilitation centre with dedicated staff assisted persons with transfemoral or transtibial amputation to adapt to the prosthesis and life after amputation. acknowledgements the authors would like to extend their appreciation to the international committee of the red cross (icrc) for the financial support under the idevelop programme; the health department, particularly the hospital physiotherapy staff at juba military hospital, for their flexibility and advice; as well as the valuable participants, who sacrificed their time and participated in the study. this article is based on first author’s research assignment entitled ‘quality of life experienced by south sudanese lower limb prosthetic users after rehabilitation’ towards the degree of master’s in human rehabilitation studies, in the division of disability and rehabilitation studies, stellenbosch university, south africa, on 25 march 2025, with supervisor dr. surona visagie. competing interests the first author is employed at juba military hospital (icrc). the author reported that they received funding from the icrc, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions l.c.p.d. was responsible for conceptualisation, methodology, investigation, writing, visualisation, project administrator and funding. s.v. carried out conceptualisation, supervision, visualisation and writing. funding information the icrc provided financial support under the idevelop programme. data availability the data are 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rehabilitation and at 3-month follow-up’, archives of physical medicine and rehabilitation 90(4), 634–645. https://doi.org/10.1016/j.apmr.2008.11.003 abstract introduction methodology methods of data analysis results discussion conclusion acknowledgements references appendix 1 about the author(s) margaret m. mweshi department of physiotherapy, school of medicine, university of zambia, zambia seyi l. amosun division of physiotherapy, school of health & rehabilitation sciences, university of cape town, south africa mary p. shilalukey-ngoma department of paediatric & child health, school of medicine, university of zambia, zambia esther munalula-nkandu department of physiotherapy, school of medicine, university of zambia, zambia zuhayr kafaar department of psychology, faculty of arts & social sciences, stellenbosch university, south africa citation mweshi, m.m., amosun, s.l., shilalukey-ngoma, m.p., munalula-nkandu, e. & kafaar, z., 2017, ‘the development and evaluation of content validity of the zambia spina bifida functional measure: preliminary studies’, african journal of disability 6(0), a264. https://doi.org/10.4102/ajod.v6i0.264 original research the development and evaluation of content validity of the zambia spina bifida functional measure: preliminary studies margaret m. mweshi, seyi l. amosun, mary p. shilalukey-ngoma, esther munalula-nkandu, zuhayr kafaar received: 03 feb. 2016; accepted: 15 feb. 2017; published: 24 july 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: very little is known on outcome measures for children with spina bifida (sb) in zambia. if rehabilitation professionals managing children with sb in zambia and other parts of sub-saharan africa are to instigate measuring outcomes routinely, a tool has to be made available. the main objective of this study was to develop an appropriate and culturally sensitive instrument for evaluating the impact of the interventions on children with sb in zambia. methods: a mixed design method was used for the study. domains were identified retrospectively and confirmation was done through a systematic review study. items were generated through semi-structured interviews and focus group discussions. qualitative data were downloaded, translated into english, transcribed verbatim and presented. these were then placed into categories of the main domains of care deductively through the process of manifest content analysis. descriptive statistics, alpha coefficient and index of content validity were calculated using spss. results: self-care, mobility and social function were identified as main domains, while participation and communication were sub-domains. a total of 100 statements were generated and 78 items were selected deductively. an alpha coefficient of 0.98 was computed and experts judged the items. conclusions: the new functional measure with an acceptable level of content validity titled zambia spina bifida functional measure (zsbfm) was developed. it was designed to evaluate effectiveness of interventions given to children with sb from the age of 6 months to 5 years. psychometric properties of reliability and construct validity were tested and are reported in another study. introduction spina bifida (sb) is one of the congenital malformations of the central nervous system that is a major and unrecognised expensive public health problem in much of africa (adeleye, magbagbeola & olowookere 2010; blenchowe et al. 2010; mweshi et al. 2015). it is the commonest of the neural tube defects, and hydrocephalus commonly occurs in association (fabiano, doyle & grand 2010; qureshi 2010; sacko et al. 2010). the two are the most recurrent and disabling malformations in neonates in the sub-saharan african paediatric environment which have a huge impact on the functioning of a growing child (mweshi et al. 2010). children with sb need specialists who can address problems related to hydrocephalus, neurogenic bowel and bladder, mobility, learning disabilities and functional limitations. they also require generalists who can help educate caregivers and address health promotion issues, including nutrition and exercise. thus, a multidisciplinary team comprising neurosurgeons, neurologists, orthopaedic surgeons, urologists, physiotherapists, paediatricians, neuro-nurses, rehabilitation specialists, psychologists and social workers is what is recommended for the management of children with sb (mitchell et al. 2004). consequently, the delivery of this complex care requires an integrated system that aligns and informs all parties involved (adzick et al. 2011; liptak & el samra 2010). studies performed on the management of children with sb in some african countries such as nigeria, cameroon, kenya, uganda and zambia have reported challenges encountered in the management of sb (adeleye et al. 2010; blenchowe et al. 2010; mweshi et al. 2015). no outcomes have been reported on the management of children with sb in sub-saharan africa; hence, knowledge on instrument measures that could be used has been unavailable. given the several studies performed in many african countries without reported evidence of the impact of management, one could probably assume that either appropriate instrument measures are inaccessible or that they do not just exist. this situation ultimately creates a gap in the provision of evidence of the impact of interventions given to such children in the regions of sub-saharan africa. therefore, in order to investigate how other rehabilitation professionals outside the region manage to measure the impact of the interventions given to children with sb, a systematic review was carried out. the search strategies used were the cochrane, database specification review, autodesk certified professional journal club, database of abstract reviews effects, cochrane controlled trial register, comprehensive microbial resource, health technology assessment and national health service economic evaluation database from 1950 to january 2010. a total of 705 (n = 705) titles and abstracts related to the topic were retrieved and reviewed. eighty-two (n = 82) titles were deemed relevant by the researchers. subsequently, data were extracted from all fitting methodological articles (n = 19) of which six (n = 6) were located and critiqued. consequently, four (n = 4) studies were critically appraised and evidence was reported. the results of the search showed that the instruments identified were the gross motor function measure (gmfm) dimensions d and e, pediatric outcomes data collection instrument parent and child versions, gillette functional assessment questionnaire walking subscale, functional independence measure for children (weefim), pediatric quality of life inventory, temporal–spatial gait parameters, o(2) cost during ambulation, child health questionnaire, functional mobility scale, pediatric evaluation of disability inventory (pedi), cp qol-child, and qol (kidscreen), bruininks-osserestsky tests, alberta infant motor scale and bayley scale of infant development (harvey et al. 2008; oeffinger et al. 2007; sullivan et al. 2007). subsequently, the search revealed 11 outcome measures of which two are commonly used tools for measuring interventional outcomes in children: the pedi and the weefim validated for american children (berg et al. 2008; sirzai et al. 2008; sonel et al. 2009). based on the results of the literature search, it can be concluded that there is no empirical data showing evidence of the pedi and weefim being translated into any of the african languages and their usage in africa. however, although the two measures have not been so easily available and perhaps applicable for zambian children, there is a lot that could be learnt from the same measures. on the other hand, it is also extremely important to note that there has been a paradigm shift of thinking from a developmental focus to functional focus in paediatric rehabilitation. for instance, worldwide researchers and clinicians who have used the pedi have highlighted variations in functional skill acquisition in clinical populations. furthermore, the importance of recognising cultural differences and the value of documenting functional progress in relation to interventions must be upheld (haley et al. 2010). it is therefore quite imperative to recognise the shift of thought from the original authors of the pedi who at one time encouraged the idea of translating the tool into local languages while using the normative data from the usa to determine whether a deficit or delay existed with regard to functional skill development (berg et al. 2008). additionally, there has been some debate over issues of culture and the importance of cultural validation of norm-referenced tests (berg et al. 2008; sirzai et al. 2008; sonel et al. 2009). despite the consensus on what appears to be the impact of culture on the functioning of children, some efforts have been made to translate the pedi into dutch, norwegian, swedish, spanish, turkish, portuguese, slovene, icelandic, french, hebrew, japanese and chinese languages (haley et al. 2010; jahnsen et al. 2002). a number of these international users have reported challenges applying the pedi to their own culture. one of the issues in translating the pedi is finding comparable words in each country’s language. for example, a norwegian team has reported difficulty finding comparable norwegian words for ‘prompting’, ‘fasteners’ and ‘item’. cultural differences required item adaptations and additions to the pedi, for example the dutch team added ‘bicycling’ to their mobility scale. inasmuch as facilitating international comparison is extremely essential in some cases, comparing the lifestyle of an american child with a typical zambian child in terms of function may not be easily justifiable. this is because ethno-theories of most countries in the developed world are very different from those of the developing world because of cultural diversity. for example, zambian children start crying for food at a later stage compared with dutch and turkish children (willemsen & fons 1997). this just highlights the importance of recognising the ability of a growing zambian child to communicate the need to eat and drink because children are breastfed for a very long time and may need to develop the survival skills after being weaned from breast milk. this is supported by the notion that breastfeeding in zambia is on demand and when the child is no longer breastfed there is a separation from the mother physically and emotionally (chibuye, mwenda & osborne 1986). other differences in culture for instance are that the pedi and weefim include the use of fork and knife in the evaluation. the two utensils may be considered unsafe for use by zambian parents or caregivers of children with disabilities. it is therefore clear that instruments such as the pedi or weefim that are in use in the usa and europe may lack appropriate items essential for zambian children and may also include tasks and materials which are not encouraged in the zambian culture. therefore, the two instruments may not be easily applicable on zambian children. as a consequence, clinicians like physiotherapists managing children with sb in zambia, cannot effectively quantify the impact of interventions given to the children and hence cannot produce evidence (mweshi et al. 2011:20). as evidence-based practice (ebp) and initiatives to improve the quality of healthcare and life in children with disabilities have grown around the world, recognition of the need to measure functional outcomes in all healthcare settings has also increased. while there has been such increasing emphasis on the provision of evidence by rehabilitation professionals worldwide (kaplan 2007), rehabilitation outcomes have been less reported in the developing world because of limited and lack of appropriate instrument measures. the inability of appropriate measures should provoke african researchers to be innovative and develop measures that are culturally sensitive to the needs of african children with disabilities. considering the lack of specific outcome measures developed for evaluating the impact of interventions given to children with sb and lack of appropriate and culturally sensitive tools among the ones available, it was deemed necessary that a measure be developed in order to measure the level of functioning in children with sb in zambia. in view of such limitations and the relevance of using a psychometrically sound instrument in paediatric rehabilitation, we set out to develop a culturally appropriate, multidisciplinary and sensitive functional measure for children with sb in zambia and subsequently tested it for psychometric properties. the purpose of this paper was to describe the processes involved in the preliminary development and content validation of the zambia spina bifida functional measure (zsbfm). methodology the study was carried out at the university teaching hospital (uth) and beit cure hospital (bch). both the hospitals, which are the only centres providing specialised care to children with sb in zambia, are found in lusaka. the two hospitals were comprehensively informed of the nature of the study through letters of permission. the initial process of instrument development involved the identification of the main domains of care in children with sb through a nine-year retrospective study, while confirmation of domains was done through a systematic review of literature. eventually, parents and caregivers of children with sb and youths with sb were recruited to participate in the process of item generation. subsequently, expert clinicians managing children with sb validated the items, and ultimately the measure called zsbfm was constructed. in total, four studies were carried out in the whole process of instrument development. the methodology section comprises the mechanisms used to identify study participants, followed by the procedures that were undertaken to collect data. eventually, methods of data analysis used in the studies will be presented. identification of participants for the studies table 1 presents samples for all the four studies involved in the initial development of the zsbfm. study 1 conveniently identified children with sb and hydrocephalus from whom domains of care were identified. study 2 captured external data of the appraised studies in the systematic review process. in study 3, purposive samples were used including participants with experience of caring for children with sb and other participants who were youths with sb. eventually, clinicians were purposively identified for study 4 from the uth and bch for the content validation exercise, and subsequently three content specialists, being two physiotherapists and one nurse, were also conveniently identified for the item–objective congruence exercise. table 2 shows the demographic details of the expert panel. table 1: study samples for the studies involved in the development of the zambia spina bifida functional measure. table 2: demographic details of the expert panel. procedure of data collection the procedures involved in the process of data collection and final instrument construction will be presented in four sections: domain identification domain confirmation instrument preparation item generation, content validation and item–objective congruence evaluation domain identification the process of identifying the domains of care started by orientating three research assistants who are physiotherapists by profession. they were oriented on how to extract relevant information from the clinical files using a data-capturing sheet and eventually entering data into the spss database. upon receiving ethical approval, permission from the hospital administrators of the two hospitals was sought. a checklist was then adapted from the assessment form routinely used for children with sb at the bch. the viability of the checklist was tested by piloting and subsequently validated by three physiotherapists, three neuro-nurses, one orthopaedic surgeon and two neurosurgeons. upon validating the checklist, domains were identified from the clinical files of children with sb and hydrocephalus identified from 2001 to 2010 (mweshi et al. 2011). domain confirmation to confirm the domains of care that were identified, a systematic review study was performed. the clinical question was: what is the evidence that the functional domains of self-care, mobility, social function, participation and communication can be used to measure function in children with sb following an intervention in zambia? a critical appraisal of functional outcomes studies and commonly used functional outcome measures with their psychometric properties in measuring the impact of interventions was performed. this whole process was based on external data from four studies giving a sample size of 1135 participants (table 1: study 2). instrument preparation preparation for instrument development is essential before items are generated. therefore, it becomes necessary to identify methods of administration, number of items testing each objective or subscale, item formats and test scoring in the preparation of instrument specifications. method of administration the instrument is expected to be administered by clinicians with the help of primary caregivers, based upon their direct observations of the child’s behaviour in performing functional activities. to facilitate a multidisciplinary approach which is needed for sb management, the zsbfm has been principally designed for use by physiotherapists, occupational therapists, neuro-nurses, neurosurgeons, orthopaedic surgeons and clinical officers in zambia. it is expected to provide an examiner’s guide and a summary scoring form, with graph paper. number of items testing each objective the establishment of the number of items began by a process of blueprint development. this was initiated by formulating a set of objectives reflecting the outcomes and critical areas to be assessed. below is a list of objectives that were set: to determine the levels of performance of self-care, mobility and social function in children with sb in their activities of daily living, to ascertain the ability of children with sb to communicate the functional needs in performing activities of daily living, to ascertain the ability of children with sb to participate in performing functional activities. the next strategy was concerned with the total number of items that would make up the zsbfm. based on the numbers of items in commonly used measures such as the weefim with 18 items, bdi with 61, gmfm with 88 and the pedi with 241 items, the researchers made a resolve to develop a measure that would neither be too short nor too long. the major content areas to be assessed included self-care, mobility and social function that appeared as column headings across the top of the table and critical areas assessed being communication and participation that appeared on the left side as row headings. at each intersection was a particular content-objective pairing and values in each cell reflecting the actual numbers of each item that were to be included in the proposed draft measuring instrument. the range of the number of items picked by the researchers was between 70 and 80. it was suggested that the total number of items for the three main domains would be between 50 and 60 items, while items on the sub-domains would be between 10 and 15 items each. a total of 52 items were suggested to reflect the three main domains of which 26 items were earmarked for self-care, 18 items for mobility and 8 items for social function. with regard to communication, a total of 13 items were proposed, of which 5 items represented communication in self-care and 8 items communication in social function, while none was suggested for the domain of mobility. participation was equally given a proportion of 13 items of which 5 items reflected participation in self-care, 3 items represented participation in mobility and 5 items were earmarked for participation in social function. table 3 shows the blueprint that was ultimately constructed in the preparation of the test specifications showing the number of proportions and items that were subsequently generated. table 3: blue print showing the number of portions and items that were proposed for developing the measure. identification of the scoring rules and procedures there are basically four classic scales or levels of measurement presented in literature being nominal, ordinal, interval and ratio scales. well-renowned measures such as the gmfm 88 have utilised the scale in the use of the four-point ordinal scale (avery et al. 2003; russell et al. 1989). given the potential advantages of using such a scale, the current study adopted a four-point likert scale (1–4). the researchers adopted a model that awards scores for performing a functional task from 4 to 1, with each statement giving equal weighting as it has been suggested that differential weighting brings about potential problems of calculation (avery et al. 2003; bjornson et al. 1998; russell et al. 1989). the final score is expected to be obtained by summing individual items. nonetheless, the expected final scores for the age ranges of 6 months to less than 2 years, 2 years to less than 3 years and 3 years to less than 5 years are different because some of the functional skills are age dependent. the results of a total score of a domain can be interpreted that a child has 100% probability of having a score of 4 on every item of a domain. general instructions for awarding scores for the performance of the task the items of functional skills of children aged 6 months to 5 years are arranged into three sections. section one has items on self-care, followed by the section on mobility and lastly social function. instructions state: please indicate by ticking (√) the statement that best describes the child’s ability to perform each of the following activities taking into consideration the appropriate age category. please note that blocked spaces in the age categories of 6 months to 2 years and 2 years to 3 years show that the child is young for the activity in question. however, the scores to be awarded are from a range of 4 to 1, with the following interpretations: score 4, independent of caregiver, can perform the activity with or without mechanical aids score 3, independent of caregiver, but needs monitoring or aid in performance of activity score 2, requires assistance by caregiver or mechanical aid in performance of activity score 1, completely dependent, needs help with activity. item generation process, content validity and item–objective congruence evaluation upon identifying and confirming the domains of care and formulating the specific instrument preparation guide, the researchers immediately went into specific item generation. this process was followed by the process of preliminary item validation and, subsequently, the congruence of the items was evaluated. process of item generation the process of item generation involved the qualitative enquiry of semi-structured interviews and focus group discussions (fgds). a summary of questions asked in the interviews and focus groups is presented in appendix 1. for the purpose of congruent items, themes and question guides from both interviews and fgds were generated from the blueprint and are shown in table 3. as soon as everything was put in place, a pilot study was performed to ensure that items would be extracted from the two methods of enquiry. semi-structured interviews were conducted before the fgds in order to identify relatively personal views before validating the general consensus views. semi-structured interviews a total of 20 semi-structured interviews were conducted in the study. appointments with the research participants were made during the clinics at both hospitals. all the interviews were carried out at cheshire homes rehabilitation centre for children with disabilities. before interviews started, informed consent was obtained from all participants and permission to record interviews was sought. participants were asked what language they were comfortable with, and the main researcher identified a research assistant in instances where she was not so comfortable with the preferred language of the participant. confidentiality was ensured and the participants were made comfortable by creating an atmosphere that facilitated freedom of expression. the first five interviews were conducted with youths and the next five with parents, or caregivers, followed by five youths and then the last five parents, or caregivers, giving a total of 20 interviews. codes were given to the participants in order to facilitate easy analysis. codes a1–a10 were given to youths who took part in the semi-structured interviews while b1–b10 to mothers or caregivers. for the purpose of quality listening, a maximum of three interviews were conducted in a day. this was meant to create ample time for the researcher to download the recorded interviews and transcribe them with ease. on average, interviews took between 45 minutes and 1 hour 30 minutes. focus group discussions upon getting consent from parents, or caregivers, and assent from the youths with sb, dates and times for the two fgds were set. the first fgd comprised youths with sb (n = 10) while the second was with parents or caregivers (n = 10) of children with sb. codes c1–c10 were given to youths, while d1–d10 to mothers or caregivers in order to facilitate easy management of data. the two fgds took place at cheshire homes for children with disabilities in kabulonga, and confidentiality was ensured before commencing the fgds. content validation and item–objective congruence evaluation when investigating content validity, the interest is in the extent to which the measure represents the content domain (waltz, strickland & lenz 2010). at least two or three experts in the area of the content to be measured can evaluate the validity of the items. when only two or three judges are employed, content validity index (cvi) is used to measure the level of agreement between the experts. when more than two or three experts rate the items on a measure, the alpha coefficient is employed as the index of content validity. therefore, in order to be more inclusive, a resolve was made to involve 12 different clinicians who are involved in the management of children with sb and 3 for the item–objective congruence evaluation. in order to validate the items generated from the interviews and fgds, appointments with 12 expert clinicians were arranged in person to explain the purpose of the evaluation. letters explaining the aim, the purpose of the questionnaire and procedure of administration were given to each research participant. subsequently, the experts were given the objectives of the measure and a list of generated items. they were asked to independently rate the relevance of each item using a 4-point rating scale: 1 not relevant, 2 somewhat relevant, 3 quite relevant and 4 very relevant. methods of data analysis qualitative analysis of paramount importance to data quality is the accuracy of the transcribed interviews and fgd notes (waltz et al. 2010). given the purpose of the study and the type of data collected, the choice of type of analysis was manifest content analysis. therefore, the analysis of both semi-structured interviews and fgds involved downloading of recorded data, translation into english and transcribed verbatim data were then placed into categories of the main domains of care deductively. the results of both the interview and focus group methodologies were categorised under similar themes and finally the back and forth potential verification with some of the original information helped to strengthen the analysis. quantitative analysis descriptive statistics were used to analyse quantitative data by using spss version 17. the level of statistical significance was set at p ≤ 0.05 at 95% confidence interval. internal consistency was measured by cronbach’s alpha. validity was measured by using both item content validity indices (i-cvis) and scale content validity indices (s-cvis) (waltz et al. 2010). instrument construction process the process of instrument construction involved compiling all the necessary components essential for the instrument measure. it involved designing the cover page presenting the title of the tool and the age limit for using the tool and the name of the instrument developer. also found on the cover page is a provision for brief information about the interviewer, respondent and about the child concerning information on sb and services such as surgery, orthotics and physiotherapy and general instructions on the use. general instructions on awarding scores for the testing different functional skills to facilitate uniformity in assessing the levels of function in the children were also put in place. the items of functional skills of a child aged 6 months to 5 years are arranged into three sections with items on self-care, followed by the section on mobility and lastly social function. instructions state: please indicate by ticking (√) the statement that best describes the child’s ability to perform each of the following activities taking into consideration the appropriate age category. please note that blocked spaces in the age categories of 6 months to 2 years and 2 years to 3 years show that the child is young for the activity in question. lastly, the summary scoring form that provides the clinician with raw scores for each sub-section and also a graph for plotting in order to monitor if there is progress or no progress in the management programme was also compiled. results the results section presents the domains identified and confirmed, items generated from qualitative data, results of the content validation exercise and the item–objective congruence exercise. subsequently, the process of instrument construction will be presented. domain identification and confirmation domains of care were identified from an audit of 1400 children with sb and hydrocephalus over a period of 9 years. categorically, social function (46%) was the highest domain of care provided, followed by hiv counselling to parents (32%), mobility (16%) and self-care (6%) (mweshi et al. 2011) the results of the study show levels of how the domains of self-care, mobility and social function were being managed. the facility of hiv counselling to parents was used significantly and hence becomes an important aspect in the whole rehabilitation process of children with sb. subsequently, the results of the literature search confirmed the already known three functional domains of self-care, mobility and social function and the two new contributions, being the domains of participation and communication that were identified and included. there is evidence that functional tools have potential to evaluate the impact of clinical interventions (adolfsson et al. 2010; bier et al. 2005; ettling et al. 2006; ketelaar et al. 2001). further, functional independence in children can be measured in three areas of self-care, mobility and social cognition using the weefim, pedi and other measures. it is highly recommended that the icf-cy-based assessment tool measuring interventions focus on communication and child participation (adolfsson et al. 2010; björck-åkesson et al. 2010; klang 2012; morris 2009). table 4a and table 4b show the domains that were identified and subsequently confirmed. table 4a: identified functional domains. table 4b: identified functional domains. item generated from qualitative data statements generated from interviews of parents and youths were initially pooled and so were those from the focus groups of parents and youths. eventually, the pooled data from the two different methods were combined to come up with one pool of results leading to a process known as triangulation. methodological triangulation is the use of two or more different kinds of methods in a single line of inquiry (risjord 2001). combinations at the method level can be used to expand the scope of a study as researchers seek to capture method-linked dimensions of a target phenomenon (greene, caracelli & graham 1989). the two methods served as invaluable tools for gathering data, and the benefits were seen from the depths of responses during interviews compared to responses from the focus group. for instance, a9, a male student, had this to share: ‘i have no interest in friends because of my smell … they run away.’ another female student, a5 shared: ‘i feel the urge to pass urine, but by the time i reach the toilet, my pants are wet. this makes me always to stay at home.’ the depth of such responses involved pure honesty and such would be quite difficult to share freely for most people. pooling of items for some researchers is performed during literature search and they just get confirmed during fgds (nassar-mcmillan et al. 2010). the current study opted to pool statements after the interviews and fgd. the statements that were pooled were a homogeneous collection of functional items around the three main domains of self-care, mobility and social function. the process of selecting items from pools of statements has been practised by several researchers (babcock-parziale & williams 2006; slaghuis et al. 2011). selecting items for the current study began first by converting the statements into clear items. for instance, a parent coded b3 during semi-structured interviews shared this: ‘my child cannot feed himself although he is 4 years.’ the deduced item was self-feeding and the functional domain identified was self-care domain. an initial pool of 150 statements enabled the key concepts to be identified and after checking for redundancy, colloquialisms and ambiguity, the number of statements was reduced to 100 statements. table 5 presents a pooling of statements from both semi-structured interviews and fgds. these statements were further categorised and thus reduced to 90 items and later categorised into the three main domains of function, being self-care, mobility and social function. following the conceptual plan of the blueprint, a selection of 78 items was made. subsequently, 36 items were grouped under self-care, mobility 21 items while social function also had 21 items, shown in table 6. the items that were generated were subsequently subjected to content validity evaluation. table 5: pooling of statements from both semi-structured interviews and focus group discussions. table 6: the 78 items identified for the content validity evaluation. content validation the frequencies of the ratings for the content validity results by the 12 expert specialists are evident in table 7. only two items had average ratings less than 3 (somewhat relevant), viz. item 2 ‘choice of drink’ ( = 2.92; s.d. = 0.90) and item 25 ‘choice of clothes’ ( = 2.83; s.d. = 0.72). all other items had average ratings from the 12 expert specialists of 3 (quite relevant) and above, while 10 items received average ratings of 4 (very relevant) indicating that all 12 expert specialists rated these items as very relevant. the average expert specialist rating for all 78 items was 3.78. table 7 shows the frequencies of ratings by the 12 expert specialists for each item that was employed for the determination of content validity of the measure. table 7: frequencies of ratings by the expert clinicians and item content validity indices. i-cvis were calculated for each item by counting the number of experts who rated the items as either somewhat relevant (3) or very relevant (4) and then dividing that total by the number of expert specialists (polit & beck 2006). as mentioned above, items 2 (choice of drink) and 25 (choice of clothes) had the lowest average ratings and thus the lowest i-cvi scores (0.75 and 0.67 respectively). in addition, item 12 (serve food) also had an i-cvi of 0.67. two items, item 1 (thirst expression) and item 6 (preparing for a drink) had i-cvis of 0.83, while 11 items had i-cvis of 0.92. the remainder of the items (62 items) had i-cvis of 1.00 indicating that all 12 expert specialists considered these items as either somewhat relevant or very relevant. polit and beck (2006) argue that s-cvis can be calculated by dividing the number of items that all experts considered either somewhat or very relevant by the total number of items. in this instance our 62 items divided by the total items (78) result in an s-cvi of 0.80, which is the standard criterion for acceptability (polit & beck 2006). when the 78 items were exposed to reliability analysis, the alpha coefficient of 0.98 was computed. when the items were further analysed in categories of the three main domains, the results showed that the alpha coefficient for self-care was 0.97, mobility was 0.95 and social function had an alpha of 0.95. therefore, results for both the cvi and alpha coefficient were above 0.80, indicating an acceptable level of content validity (waltz et al. 2010). based on such results, decisions had to be made on the following three items: choice of drink (self-care) choice of clothes (self-care) serve food (self-care). it was recommended that item 12 (serve food) under self-care domain be removed thus reducing the number of items to 77. however, items 2 (choice of drink) and 25 (choice of clothes) were recommended for reliability evaluation. instrument construction: zambia spina bifida functional measure the measure with 77 items was finally assembled including the preparation of the cover page with important information, directions, scoring keys and answer sheets. subsequent to compiling all important documents, the first draft of the tool, titled ‘zambia spina bifida functional measure’ (zsbfm), designed for evaluating the performance of functional skills in children with sb in zambia, was developed. the zsbfm is aimed at measuring the impact of interventions like surgery and physiotherapy given to children with sb from the age of 6 months to 5 years. the zsbfm draft had two sections: section a: demographic data, while section b: 77 items categorised in three domains of self-care, mobility and social function. from the 77 items, 37 (48%) were under the self-care domain, 19 (25%) mobility domain and 21 (27%) under the social function domain. discussion faced with the clinical problem of lack of evidence on the impact of interventions given to children with sb, the researchers set out to develop a tool expected to fill the gap that existed. the intent was to locally generate a measure with psychometric adequacy that could readily be available, affordable, appropriate and culturally sensitive in assessing the performance of functional skills in children with sb in zambia. a retrospective study was conducted to identify domains and through a systematic review, the domains were confirmed. subsequently, items were generated, content validation was performed, and subsequently the first draft was constructed. domains of care identified from the retrospective study showed that social function was the highest care provided, followed by hiv counselling to parents, mobility and self-care. mobility performed fairly in the management of children with sb in zambia. although mobility performed fairly, such impairments are very common among individuals with sb (haley et al. 2010; jahnsen et al. 2002) and many lead sedentary lives compared to those without disabilities (willemsen & fons 1997). the problem of mobility can be quite overwhelming in zambia where accessibility for persons with disabilities is quite a big challenge. despite mobility limitations in some individuals with sb, a lot is expected from them by society for them to be accepted and appreciated. this can be confirmed by a study that was conducted in zambia which revealed that boys are involved in gardening, fetching firewood, running errands and washing plates. the chores for girls include washing plates, fetching water and firewood, bathing babies, running errands, pounding food and cooking (chibuye et al. 1986). such demands must be taken into consideration when carrying out interventions for individuals with sb. perhaps this should motivate clinicians to look for ways and means of rehabilitating individuals with mobility problems in order to prepare them participate in chores expected of them regardless of their physical status. even though self-care was rated poorly in terms of care given to children with sb in the current study, literature reveals that only about half of children with sb are able to live independently and almost a quarter of them experience both urinary and faecal incontinence in their lives (adeleye et al. 2010; blenchowe et al. 2010). in spite of the global problems of self-care with problems of the bladder and bowel, zambian children may have different demands considering the cultural variations and implications. for instance, zambian children are expected to begin eating on their own at a young age (evans & myer 1994) considering that most mothers just abruptly stop breastfeeding which could affect a growing child negatively if not observed carefully. participation and communication were identified through a systematic review as new sub-domains recommended by the icf-cy (klang 2012). it must be noted that the two sub-domains were not measured in earlier developed measures such as the pedi and weefim, but these have been identified as important domains. these domains may include for example, mobility, self-care, participation, communication, social relationships, leisure or play, education, domestic chores and community integration (morris 2009). one of the critical issues rehabilitation professionals need to address is how physiotherapeutic exercises or other clinical interventions given to a child with disabilities can be measured using functional outcomes tools. the results of the clinical trial study of ketelaar et al. (2001) show that the task-specific approach is more effective than the one that takes into account the motor function in a developmental manner. additionally, the task-oriented approach has proven to be a systematic way of trying to solve a child’s functional problems. the current knowledge that has been gained in the use of the icf-cy has come with other measurement challenges such as the inclusion of participation and communication in new measures as presented by adolfsson and colleagues and morris and colleague (adolfsson 2011; morris 2009). the new challenge is calling on rehabilitation professionals such as physiotherapists to plan the task-oriented functional approaches in such a way that they become inclusive of participatory tasks which are also age-oriented by nature. the process of item generation involved the use of two methods, being semi-structured interviews and fgds. several simultaneous steps have been reported in the process of item generation, which eventually led to a pool of items based on a thorough literature review, existing scales, expert opinion (delamere, wankel & hinch 2001) and eventually leading to fgds (nassar-mcmillan et al. 2010). the researchers of the current study utilised the reported several steps except that instead of involving expert opinion in the beginning, a retrospective study was performed to evaluate and identify important functional domains and eventually semi-structured interviews and fgds were conducted. some studies (delamere et al. 2001; saldana 2009) have used focus groups to confirm the items and also identify domains, whereas the current study used already confirmed domains from a systematic review study and eventually used them to generate items using semi-structured interviews and fgds. selecting appropriate data-recording strategies that would help organise data is recommended (saldana 2009). of paramount importance to data quality is the accuracy of the transcribed interviews and fgd notes (waltz et al. 2010). given the purpose of the study and the type of data collected, the choice of type of analysis was content analysis. because the researchers wanted to capture the experiences and views of parents or caregivers of children with sb and youths with sb concerning functional skills, they opted to transcribe and present data in verbatim form. data were then placed into categories of the main domains of care deductively. the results of the two methodologies were categorised under similar themes and finally the back and forth potential verification with some of the original information helped to strengthen the analysis. the concept of validity refers to the degree to which an instrument measures what it is supposed to measure (dekker, dallmeyer & lankhorst 2005). the procedures for validity evaluation of the current study focused on content. criterion validity was not included in the plan because a gold standard is frequently not available in rehabilitation, which precludes evaluation of criterion validity (i.e. the degree to which the scores on an instrument correspond to the scores on the gold standard). the process of content-relevant evidence in the current study included the initial restricting of item selection to the test blueprint and obtaining content validity ratings from subject matter experts. content validity is often viewed as the minimum psychometric requirement for measurement adequacy and is the first step in construct validation of a new measure. it must be built into the measure through the development of items (waltz et al. 2010). a sample of 12 clinicians was identified comprising 5 physiotherapists, 3 neuro-nurses, 2 clinical officers, 1 neuro-pediatrician and 1 neurosurgeon. the professionals’ average years of experience in child health services was 22 years (s.d. = 8.82) and had academic qualifications in their respective fields (msc, bsc and diploma). it is suggested that a minimum of five experts in the field are recommended to judge the content domains of an instrument (dempsey & dempsey 1986). the sample size identified for the study was quite adequate, and there was a good and wide representation considering the team of clinicians who manage children with sb in zambia. the level of agreement between the 12 experts was determined via coefficient alpha in order to measure the content validity. item as well as s-cvis were calculated and were indicative of a validity of the measure by separately evaluating each item (waltz et al. 2010). additionally, the alpha coefficient computed for the scale items that were generated was between 0.95 and 0.98, showing an acceptable level of content validity (martuza 1977). given the good internal consistency as well as the good i-cvis and s-cvi, we argue that the zsbfm for children with sb in zambia is contextually relevant and valid for use in this context. conclusion a draft measure titled zsbfm for children with sb in zambia has been developed. it is meant to help clinicians managing children with sb measure the impact of interventions such as surgery and physiotherapy given to children aged 6 months to 5 years. the measure can provide an opportunity to assess children with sb in performing distinct functional skills based on 77 items categorised into the three main domains of self-care, mobility and social function. the draft zsbfm has an acceptable level of content validity. psychometric properties of reliability and validity were measured through cronbach’s alpha reliability and later i-cvis and s-cvis. acknowledgements the authors wish to thank the university of zambia for the financial and material support towards this study. gratitude also goes to the management and staff of bch and uth for allowing the study to be carried out at the hospitals and the research assistants mr ephron soko, mr lieto and mr edwin zulu. special thanks also go to dr akakandelwa, university of zambia, and prof. waltz, prof. vance of the usa and dr kafaar zuhayr of stellenbosch university in south africa for helping in the statistical analyses. finally, gratitude goes to my supervisors prof. seyi ladele, dele, prof. shalalukey ngoma and prof munalula-nkandu for guidance. the study received partial funding from the university of zambia as part of staff development. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.m.m. conceptualised the study. s.l.m., m.p.s. and e.m.n. supervised the protocol development, data collection, data analysis and generation of the manuscript. z.k. did the final statistical analysis of the data presented. all the authors participated in the internal review and finalisation of the article. references adeleye, a.o., magbagbeola, d.d. & olowookere, k.g., 2010, ‘central nervous system congenital malformation in a developing country: issues and challenges against their prevention’, 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1health economics and hiv and aids research division (heard), university of kwazulu-natal, south africa correspondence to: jill hanass-hancock postal address: heard, university of kwazulu-natal, westville campus j block, durban 4041, south africa dates: received: 27 mar. 2012 accepted: 19 jan. 2013 published: 12 feb. 2013 how to cite this article: hanass-hancock, j., regondi, i. & naidoo, k., 2013, ‘disability and hiv: what drives this relationship in eastern and southern africa?’, african journal of disability 2(1), art. #25, 6 pages. http://dx.doi.org/10.4102/ ajod.v2i1.25 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. disability and hiv: what drives this relationship in eastern and southern africa? in this opinion paper... open access • abstract • introduction • factors driving disability • disability and hiv: pathways and interactions • existing literature and scope for further research • policy implications • conclusion • acknowledgments    • competing interests    • authors' contributions • references • footnote abstract top ↑ the eastern and southern africa (esa) region is the epicentre of the global hiv epidemic and also home to a large number of people with disabilities. both hiv and disability are significant public health issues. while they are generally viewed as distinct and unrelated phenomena data seems to suggest that they are particularly closely intertwined in esa. for the first time in history, by using the same disability indicator consistently, the publication of the world report on disability in 2011 has allowed for the comparison of disability data between countries, and across regions. this has the potential to shed some light on the relationship between disability and socio-economic markers and other health conditions in a way that was not possible previously. in the absence of disability and hiv-specific population-based surveys, this paper uses global socio-economic and hiv datasets and compares them to data contained in the most recent world report on disability. the analysis suggests that disability prevalence may be related to hiv-prevalence in esa (pearson 0.87). it identifies research and policy gaps and seeks to shed light on the relationship between the two phenomena. it concludes that, more than any other region in the world, esa needs to ensure better data collection on disability and the inclusion of disability throughout its hiv programmes in order to provide a comprehensive and appropriate response to the epidemic. introduction top ↑ disability and hiv might be more interrelated in eastern and southern africa (esa) than in any other part of the world. it is well known that the esa region is the epicentre of the global hiv epidemic (joint united nations programme on hiv/aids [unaids] 2010; unaids 2011). approximately 68% of all people living with hiv (plhiv) reside in sub-saharan africa, which includes esa (unaids 2011). what may be less well known is that the latter is also home to very high disability prevalence rates; however, until recently it was impossible to compare disability data across countries as the use of indicators and data collection varied too greatly.in 2011, the world report on disability was released by the world health organisation (who) and the world bank. in using the same indicator across countries, for the first time in history, the report provided the global community with valuable and comparable disability prevalence data. this indicator uses a comprehensive definition and measure of disability, which captures activity limitations and their intensity, rather than merely capturing a more overt concept of impairment (which is based on the medical concept of disability). the report states that the international classification of functioning, disability and health (icf) was used as a conceptual framework to guide this approach (world health organization & the world bank 2011). the benefit of this approach cannot be overemphasised. previously, disability measures differed from country to country, thus making cross-country comparisons very difficult. this paper takes advantage of newly-available data to analyse global and regional hiv, disability and socio-economic data in a way never before possible. the paper will focus on the esa region, which has the highest hiv-prevalence in the world. using the who and/or world bank disability indicator, the world report on disability suggests that disability prevalence in the esa region is between 14% and 36%, including different types and degrees of disability. swaziland has the highest disability prevalence (35.9%) and south africa, which hosts more people living with hiv than any other country in the world, has a disability prevalence of over 24% (who/world bank 2011). therefore, people with disability constitute a significant proportion of esa, yet hiv programming in the region is not accessible to and inclusive of people with disabilities, nor does it provide for hiv-related disability, as argued by much of the relevant literature (groce 2004; hanass-hancock 2009; nixon et al. 2011b; rohleder & swartz 2009; swartz, schneider & rohleder 2006; unaids 2009; wazakili 2010). in the mid-2000s, the roll-out of anti-retroviral treatment (art) in esa increased the life expectancy and survival rate of people infected with hiv (unaids 2010; unaids 2011). however, along with this progress, the risk of experiencing hiv-related disabilities also increased (hanass-hancock & nixon 2009; myezwa et al. 2011; nixon et al. 2011a; nixon et al. 2011b). this research area has received some attention in resource-rich settings, where art has been available since the mid-1990s (hanass-hancock & nixon 2009). however, it remains relatively unexplored in resource-poor settings, such as esa. similarly, while some data is available on the relationship between mental health and hiv (brandt 2009), limited research has been conducted on the connection between hiv and other kinds of disabilities in africa (brandt 2009; hanass-hancock 2009; smart 2009). some literature focuses on hiv-related impairments in the region, such as neurocognitive impairments, hiv dementia, neuropathy, epilepsy, hypertension, and motor delays in children (burton 2010; del rio, foyaca-sibat & ibanez-valdez 2007; ferguson & jelsma 2009; joseph & prasad 2005; joska et al. 2010; lawler et al. 2010; lawler et al. 2011; lowe et al. 2010; maritz et al. 2010; wong et al. 2007; yengopal & naidoo 2008 ), yet seldom have these conditions been connected to the broader concepts of disability and rehabilitation (brandt 2009; hanass-hancock & grant 2010; myezwa et al. 2009; nixon et al. 2011b). it is therefore not surprising that national programmes on hiv and national strategic plans (nsps) seldom include the concept of disability, with many failing to address hiv-related disability altogether (hanass-hancock & grant 2010). this paper highlights some contemporary thinking about hiv and disability, and in so doing, begins to explore this relationship. it discusses some of the commonly-described key factors driving disability and poses a number of questions: to what extent are hiv and disability interrelated, and can hiv be one of the driving factors behind high disability rates in the region? the paper uses the scattered literature on disability and hiv as well as publicly available international datasets in order to explore trends and relationships between disability and a number of socio-economic variables. disability prevalence, as mentioned above, was extracted from the 2011 world report on disability; hiv-prevalence was extracted from the 2011 unaids report, and the socio-economic datasets from the world development indicators database (world bank n.d.) and the 2011 human development report (united nations development programme 2011). it is hoped that some of the ideas that are raised in this exploratory paper will help spearhead further research on the link between disability and hiv. factors driving disability top ↑ disability can be understood on three different levels; namely impairment, activity limitation, and participation restriction levels. whilst impairment is often a result of acquired health conditions, the other two levels are a result of ‘inaccessible environments that cause disability by creating barriers to participation and inclusion’ (who/world bank 2011). the world report on disability highlights several risk factors that drive impairment and/or disability. these factors include infectious diseases (hiv, tuberculosis [tb] and sexually-transmitted [stis]); non-communicable chronic diseases (such as diabetes and cancer); injuries (including road traffic accidents, violence and occupational injuries); environmental conditions (poor sanitation, poverty, natural disasters and conflict situations); and old age, as the chances of becoming disabled increase with age (who/world bank 2011). the literature on disability places significant emphasis on disease, injuries, poverty, and old age (banda 2005; braithwaite & mont 2009; cass centre for approved social science & rekopantswe 2007; choruma 2006; elwan 1999; emmett 2006; handicap international 2011a; mitra, posarac & brandon 2012; watermeyer et al. 2006) and their contribution to the development of disability. for instance, the link between poverty and disability is often discussed as a ‘vicious circle’ (handicap international 2011a; mitra et al. 2012), where poverty features as one of the key drivers of disability; disability may in turn lead to impoverishment due to lack of opportunities and access to health services, education, employment, et cetera (elwan 1999; emmett 2006; mitra et al. 2012; who/world bank 2011). similar to gillespie’s analysis of hiv and economics (gillespie et al. 2007) it is interesting to explore how disability relates to key socio-economic indicators such as gross national income (gni), the gini coefficient, a common measure of income inequality, and the human development index (hdi), a composite index and comparative measure of life expectancy, literacy, education and standards of living. intuitively, a negative relationship between disability and these socio-economic indicators could be expected, but, using data from both developed and developing countries, this paper found that on a global level, there was only a very weak correlation between disability on the one hand and hdi, gini and gni on the other. however, one could argue that in different regions of the world, disability is driven by different factors and therefore the correlation is weak or non-existent. for instance, in low-income countries disability is likely to be driven by malnutrition, conflict, and poverty, while in more developed countries it could be driven by an aging population and an increase in non-communicable diseases. a regionor country-specific analysis might, however, be more appropriate. the analysis for this paper was, therefore, an esa-specific analysis, with the intention of exploring how the linkages between disability and hiv, as well as other socio-demographic factors, play out in a high hiv-prevalence area such as esa. a limitation of the analysis is that only data from those countries where both disability and hiv data was available were used. while the 2011 unaids report included all esa countries except ethiopia, the world disability report only included a selection of countries. not all countries were selected for the who survey, so a common and comparable disability indicator is only available in the selected countries. the world disability report states that the countries selected for the global survey were chosen using a stratified, multistage cluster (who 2011). this paper used the who dataset and compared it to other datasets as described above for the esa region (see table 1). table 1: socio-economic, disability and hiv data for eastern and southern africa. our analysis of these datasets found no strong association between disability and hdi, gini or gni, as illustrated in figures 1 and 2. these findings may suggest that even in this region, disability may be driven by numerous factors, and that its relationship with poverty, education, health, and so on is a complex one and more difficult to highlight as in the case of hiv. whilst academics in the field of economics have established a link between increased hiv-prevalence and inequality using the same data (gillespie et al. 2007), figures 1 and 2 illustrate that the same connection cannot be shown between disability and inequality or poverty indicators (gini, hdi or gdp)1. a few of the higher-income countries of the region – such as south africa, namibia and swaziland – actually exhibit very high disability prevalence rates, thus running contrary to common assumptions about the positive relationship between disability and poverty. if poverty, education and standards of living are not clearly driving disability in this region, what else could be at play?health and access to health services is one of the other factors and plausible links to disability (who/world bank 2011). as esa is a high hivand tb-prevalence area, one could argue that disability might be driven in part by these diseases and their treatment (meintjes et al. 2012; nixon et al. 2011b). an investigation ensued to determine whether hiv could indeed be a key factor associated with disability in this region. to explore the feasibility of this argument, the prevalence of disability and hiv globally, in both developing and developed countries, was correlated. interestingly, no such association was found on a global scale. however, as figure 1 shows, when restricting the analysis to countries in the esa region specifically, a strong correlation (r = 0.87) was found. even when controlling for outliers, the correlation still yielded a high pearson’s value of 0.71 (figure 3). this shows nothing more than that the countries in esa that are burdened with high hiv-prevalence are also those with high disability prevalence. whilst correlation certainly cannot be equated with causation, this finding does provide some scope for reflection. figure 1: disability and human development index in eastern and southern africa. figure 2: disability and gross national income in eastern and southern africa. figure 3: disability and hiv-prevalence. as there is currently a paucity of research on both hiv-related disability and on people with both disability and hiv, exploration of the link between the two phenomena is needed urgently. given the millions of people who are infected with hiv in the region, this relationship could have massive health, social and economic implications. in the era of art, with all its side effects and potentially disabling associated conditions (meintjes et al. 2012; nixon et al. 2011b), this realisation is particularly important. however, because of the lack of population-based data, we can only speculate about the relationship between disability and hiv; there is little information about both the extent of hiv-related disability in the region and hiv-prevalence rates among people with disabilities. the few studies that exist indicate diverse adverse effects to all available art drugs (meintjes et al. 2012), possible high prevalence of hiv-related disability including those people on art (myezwa et al. 2011), as well as high hiv-prevalence amongst people with disabilities (shisana et al. 2009), yet these are only isolated study results, mainly focusing on south africa.without population-based knowledge, it is difficult for both policy-makers and practitioners, in both the public and voluntary sector, to plan accurately and provide appropriate services on the right scale. disability and hiv: pathways and interactions top ↑ while the need for a deeper understanding has been established, and although it is difficult to identify clear pathways and interactions between disability and hiv, the link between the two remains a largely under-researched field. however, the available data suggests that people with disabilities are at increased risk of exposure to hiv (groce 2004; hanass-hancock 2009; unaids 2009) and that plhiv are at risk of developing impairments that can lead to disability as a result of their illness (including opportunistic infections) or their treatment, given the toxicity and associated adverse reactions and sometimes poor absorption of arts (brandt 2009; meintjes et al. 2012; myezwa et al. 2009; myezwa et al. 2011; nixon et al. 2011a; nixon et al. 2011b; sherr et al. 2011; smart 2009). on the one hand, people with disabilities are seen as an at-risk population because they are exposed to well-known hiv risk factors such as poverty, inadequate sex education, poor access to health services, risk of sexual abuse, and partner fluctuation, to which women and girls with disabilities are particularly vulnerable (banda 2005; groce 2004; hanass-hancock 2009; rohleder & swartz 2009; swartz et al. 2006; touko et al. 2010; unaids 2009; watermeyer et al. 2006; wazakili 2010). the few studies that measure hiv-prevalence amongst people with disabilities in africa support these arguments by revealing similar or higher hiv-prevalence rates amongst people with disabilities than their able-bodied peers ( shisana et al. 2009; taegtmeyer et al. 2009; touko et al. 2010). on the other hand, studies are emerging which provide some insight into the extent (in terms of numbers and conditions) to which disability is an increasingly common problem in relation to hiv and its treatment (meintjes et al. 2012; nixon et al. 2011b). existing literature and scope for further research top ↑ a number of medical studies which focus predominantly on the impairment level identify several hiv-related impairments. these include hiv dementia, neurocognitive disorders, peripheral neuropathy, blindness, skin problems, fatigue, strokes, depression and many others (maritz et al. 2010; mcgrath & cooke 2007). activity limitations are often identified in studies that use quality of life scales in exploring the impact of hiv as a chronic illness (mannheimer et al. 2005; mcinerney et al. 2008; pate et al. 2009). they point to issues with mobility and household activities. the extensive literature that exists on the stigma and discrimination that surround hiv relates to participation restrictions. helpfully, all of the studies that use the icf model and its related tools cover all three aspects of disability, as identified by the framework itself. an example of one such study is by myezwa et al. (2011), who compared four different studies that used the icf framework in resource-poor settings. the paper illustrates that plhiv experience pain, cardiovascular function disorders, digestive function problems, especially weight maintenance, decreased sexual and reproductive functions, loss of muscular power, and skin problems. although the sample size in each of these studies was limited, the extent of hiv-disability was clearly not. mental functions presented the most problems, with sleep, energy and drive, and emotional functions being the most affected. in those who were undertaking long-term therapy, body image was a key issue for the majority of people surveyed. decreased mobility, ability to self-care and perform domestic tasks, as well as ability to remain at work were other commonly cited problems, which could eventually lead to disability. unfortunately, this paper has only been able to raise questions rather than provide definitive answers, given that there is no population-based data available for the esa region. there is a lack of such data for both hiv-related disability and people with disability and hiv. most available studies are conducted on a small scale and provide insight into the relationship between disability and hiv, but do not provide enough information about how the link plays out on a population level. as mentioned earlier, this data is crucial to inform hiv programmes in the region. on the one hand, people with disabilities have the right to access hiv prevention, treatment and care. using a human rights perspective, the need to focus on intervention research in this field can be argued. however, in order to provide the right disability data, there is also a need to advocate for the inclusion of disability-related questions in larger household surveys, hiv-prevalence studies or intervention studies. furthermore, there is little information available on hiv-related disability which focuses specifically on resource-poor settings. the urgency to better understand the relationship in more depth was highlighted in special sessions at the disability networking zone, the rapporteur session at the icasa conference in ethiopia in december 2011, as well as at the xix international aids conference in washington 2012 (hanass-hancock, mac-seing & timpo 2012; handicap international 2011b; heard 2011). this provides hope that the issue may gain greater prominence in the operations, actions and funding strategies of the many actors and stakeholders present in the field. policy implications top ↑ from a policy perspective, hiv programming will increasingly have to address and include disability in its response to prevention, treatment, care and support. thus far, progress has been limited. a 2010 systematic review of all national strategic programmes (nsps) on hiv in the esa region revealed that only a few countries identified disability as an issue in their response to hiv, and that none of them addressed hiv-related disability (hanass-hancock, strode & grant 2011). at the same time, many esa countries have signed the un convention on the rights of persons with disability and are therefore obliged to address disability. additionally, many nsps are currently under review, and this provides an invaluable opportunity to positively influence the shape and content of future plans. the recently-launched disability-inclusive nsp framework provides valuable guidelines and tools on how best to develop these, and at the same time fulfil countries’ obligations under the un convention (nsp task group on disability & hiv 2011). this framework was launched by unaids, handicap international and heard at icasa (handicap international 2011b; heard 2011) and taken up in a skills building workshop at the xix international aids conference 2012 (hanass-hancock et al. 2012). the workshop was highlighted in the final conference rapporteur session: we learnt also from the skills-building workshop on the inclusion of disability in national strategic plans that despite the ratification of the crpd many countries have not addressed the issues of this group which accounts for 15% of the world’s population … we were told to tell you that universal access, zero infections, zero aids-related death and zero discrimination cannot be achieved without including the world’s largest minority: the disabled. (volderine hacket, leadership and accountability programme rapporteur report, xix international aids conference, washington, 2012) to sum up, particularly in esa, responses to hiv and aids can no longer feasibly be conceived separately from responses to disability. conclusion top ↑ the picture painted above as well as a number of reviews in the field (brandt 2009; hanass-hancock 2009; meintjes et al. 2012; rohleder et al. 2009) provide a glimpse into the possible ways in which hiv and disability may be related. the link between these two phenomena might be greater in high hiv-prevalence countries than elsewhere, where wars, accidents, poverty, age, diseases and other factors could be driving disability more dominantly. the sparse literature that is currently available on disability and hiv provides little information and is neither conclusive nor exhaustive. further research is urgently needed in order to prepare the region for the current and future impact of both issues. from a practical perspective, hiv programmes need to integrate disability into their activities in a more effective manner in order to offer comprehensive responses to the epidemic and the impairments, restrictions and limitations that it may bring. nsps might be a key document to work with at this point. the consequences of not doing so in esa, given the extent of the epidemic, would not only be a human rights disaster, but will also have an impact on many other issues in the region such as socio-economic issues, as people survive but with less ability to support their livelihoods if rehabilitation is not available. therefore, the urgency of this task, from a health, social and economic point of view, cannot be overstated. acknowledgments top ↑ competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions j.h-h. (heard) was the project leader, developed the conceptual framework for the analysis and wrote the first and final draft of this paper. i.r. (heard) supported the analysis process, wrote portions of the paper and developed the figures. k.n. 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young people in nyanga, south africa’, in j. stanovic & m. lalic (eds.), sexuality education and attitudes, pp. 135–158, e-book: nova publishers. wong, m.h., robertson, k., nakasujja, n., skolasky, r., musisi, s., katabira, e., mcarthur, j.c., ronald, a. & sacktor, n., 2007, ‘frequency of and risk factors for hiv dementia in an hiv clinic in sub-saharan africa’, neurology 68, 350–355. world bank: world development indicator database, n.d., viewed 03 march 2012, from http://data.worldbank.org/data-catalog/world-development-indicators world health organization & the world bank, 2011, world report on disability, world health organization, malta. yengopal, v. & naidoo, s., 2008, ‘do oral lesions associated with hiv affect quality of life?’, oral surgery, oral medicine, oral pathology, oral radiology, and endodontology 106, 66–73. http://dx.doi.org/10.1016/j.tripleo.2007.12.024 footnote top ↑ 1. figures 1 and 2 portray the association between disability prevalence figures from the world bank and who, compared with hdi figures obtained from the undp (figure 1) and gni in esa (figure 2). the figures show no association between disability and socio-economic indicators. article information authors: alister munthali1 stine h. braathen2 lisbet grut2 yusman kamaleri2 benedicte ingstad3 affiliations: 1centre for social research, university of malawi, malawi2sintef technology and society, oslo, norway 3department of community medicine, university of oslo, norway correspondence to: alister munthali postal address: po box 278, zomba, malawi dates: received: 03 jan. 2013 accepted: 30 july 2013 published: 30 sept. 2013 how to cite this article: munthali, a., braathen, s.h., grut, l., kamaleri, y. & ingstad, b., 2013, ‘seeking care for epilepsy and its impacts on households in a rural district in southern malawi’, african journal of disability 2(1), art. #54, 8 pages. http://dx.doi.org/10.4102/ ajod.v2i1.54 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. seeking care for epilepsy and its impacts on households in a rural district in southern malawi in this original research... open access • abstract • introduction    • background about malawi    • about the study • methodology    • research setting    • research methods, research design and data collection    • study limitations • ethical considerations • data analysis • results    • perceptions about the causes of illness    • seeking treatment for epilepsy    • barriers to seeking therapy for epilepsy    • impacts of epilepsy on the household • discussion • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: epilepsy is a disability as defined in the 2012 disability act of the government of malawi. objectives: this article explores the health-seeking behaviour of people with epilepsy in a rural town in southern malawi and how having a person with epilepsy impacts on the households’ productivity. method: a snowball approach was used to identify persons with various forms of disabilities. the article is based on a bigger study carried out in malawi which explored how persons with disabilities seek health care. in this bigger study, a total of 63 interviews were done with persons with disabilities or their guardians. eight of the 63 interviews were with persons with epilepsy and this article is based on these interviews. results: the study found that persons with epilepsy seek both traditional and modern medicines to treat the condition. informants mentioned that barriers to accessing western treatment include lack of medicines, congestion at health facilities, lack of knowledge about epilepsy, misdiagnosis by health workers and the belief that epilepsy caused by witchcraft cannot be treated by western medicine. the study also highlights the wider impacts of epilepsy on the household such as the failure of children to attend school, children dropping out of school, stigma and discrimination and households being driven deeper into poverty as a result of seeking care for members with epilepsy. conclusion: the existing barriers to accessing treatment for epilepsy can be addressed by using a combination of public education, simple treatments and regular reviews. ensuring constant availability of drugs for the treatment of epilepsy is key to effective treatment of the condition. this would contribute to closing the treatment gap for epilepsy as advocated by the global campaign against epilepsy. introduction top ↑ epilepsy refers to disorder of the brain characterised by recurrence of unpredictable interruptions of the normal brain function called epileptic seizures (fisher et al. 2005; world health organization [who] 2012). an individual has a 1 in 10 chance of experiencing at least one epileptic seizure in his or her life. active epilepsy has been defined as one that has caused two or more unprovoked seizures on different days in the year prior to the assessment date (who 2004). biomedically, there are two broad categories of epilepsy: symptomatic epilepsy resulting from particular identifiable causes such as birth asphyxia, head injury and meningitis, whilst idiopathic epilepsy may develop without any identifiable cause, of which the who (2012) says that such a type of epilepsy has an underlying genetic basis. whilst this classification has been accepted all along, the international league against epilepsy commission on classification and terminology revised the concepts, terminology and approaches for classifying seizures and forms of epilepsy based on aetiology. the recommendation is that the following classification should be used, namely, (1) genetic epilepsy, which is a direct result of a genetic cause; (2) structural-metabolic epilepsy, which results from a separate structural or metabolic condition; and (3) unknown, which implies that the cause of epilepsy is unknown and there is a need for further research (berg & scheffer 2011). in african societies the causes of epilepsy include childhood febrile convulsions, various infections, injuries, tumours and vascular diseases (diop et al. 2003). asindi et al. (1995) found that birth asphyxia, infections and hypoglycaemia were causes of epilepsy amongst infants in 48% of the cases. epilepsy is the most common serious chronic brain disorder estimated to affect at least 50 million people in the world, of which 10 million live in africa alone (diop et al. 2003). the prevalence of active epilepsy in developing countries ranges from 5 to 10 per 1000 people (scott, lhatoo & sander 2001). over the years, there have been great advances in the diagnosis and treatment of epilepsy, but to date 8 million people with epilepsy are not treated (diop et al. 2003; who 2004) due to poor infrastructure, insufficient availability of drugs and shortage of human resources (who 2004; diop et al. 2003), amongst other factors. in order to close the prevailing treatment gap, in 1997 a global campaign against epilepsy was jointly launched by the who, the international league against epilepsy and the international bureau for epilepsy (scott et al. 2001; who 2004). background about malawi malawi is a small country located in central africa and has a population of 13 million people (national statistical office 2008). there are 24 districts and lilongwe is the capital city. a study conducted by the federation of disability organisations in malawi found that 2.8% of the population in malawi constitutes persons with epilepsy (amos & wapling 2010), and this is lower than an earlier estimate of 5.2% by the who (2004). whilst treatment for epilepsy is available, access still remains a major challenge in malawi (amos & wapling 2010). whiteley (2005) says that seizures are often complicated by burns when people fall onto fires or stoves. of 100 malawian adults admitted in a hospital with burns, 36 had sustained these during an epileptic seizure (buchanan 1972, cited in watts 1989). this demonstrates that epilepsy is one of the major non-communicable diseases in malawi, hence should be given priority. the ministry of health provides treatment for persons with epilepsy and the condition is amongst the diseases prioritised in the essential health package (ehp) in the 2011–2016 malawi health sector strategic plan (ministry of health 2011). it has been demonstrated that conventional anti-epileptic drugs such as phenobarbitone can be used successfully in malawi (watts 1989) and that 2.8% of malawians suffer from this condition. epilepsy and other neurological diseases have not received much attention in terms of increasing patients’ access to appropriate drugs. whilst some studies on epilepsy have been done (e.g. amos & wapling 2010; chilopora et al. 2001; watts 1989; whiteley 2005), there is limited information on health seeking behaviour for people with epilepsy and how having a person with epilepsy within the household impacts on the household welfare and productivity. about the study this article is based on a bigger study conducted by sintef, the foundation for scientific and industrial research, a research organisation based in oslo, norway, together with the faculty of medicine at the university of oslo in norway; and the centre for social research of the university of malawi. the major objective of the study was to explore access to health services by persons with disabilities. it was based on the premise that whilst international conventions such as the united nations convention on the rights of persons with disabilities call for equality in accessing health care for all people including persons with disabilities, the situation at national level in most countries is different; people with disabilities are often neglected in the provision of social services (eide & loeb 2006).a few other studies have been done exploring access to health care by people with disabilities in malawi. for example in 2003 a survey of living conditions amongst people with disabilities in malawi was conducted, using the international classification of functioning, disability and health (icf) model to identify persons with disability. the model defines disability in terms of participation restriction and activity limitations (who 2005). this study showed that whilst 84.2% of the people with disabilities were aware of health services and 83.4% needed services, only 61% actually received the services (eide & loeb 2006). these results demonstrate that even though services may be available and the constitution of the republic of malawi calls for provision of services to all malawians (government of malawi 1994), people with disabilities have problems accessing these services mainly because of their disability. the survey on living conditions does not really explain the health seeking behaviour of people with disabilities. the current study was therefore conceptualised to produce some empirical evidence on the health-seeking behaviour of people with specific disabilities and their families, and how the presence of people with specific forms of disability impacts on the welfare and productivity of the household. whilst people with various forms of disabilities were interviewed in the overall study, this article focuses on the health-seeking behaviour of persons with epilepsy and how this impacts on households’ welfare and productivity. the focus on epilepsy is important for malawi as the condition has not received much attention over the years. in malawi, as well as internationally, epilepsy is considered as a disability. the malawi disability act 2012 defines disability as follows: ‘disability’ means a long-term physical, mental, intellectual or sensory impairment which, in interaction with various barriers, may hinder the full and effective participation in society of a person on equal basis with other persons. (government of malawi 2012:6) since epilepsy is a neurological disorder, it can be classified as a mental impairment; hence a disability. the definition of mental health by the who (2010) is quite clear and it includes epilepsy. the who defines ‘mental health conditions’ as including schizophrenia, bipolar disorder, depression, epilepsy, alcohol and drug use disorders, child and adolescent mental health problems, and intellectual impairments. epilepsy in malawi, as well as at a global level, is therefore considered as a disability and this being the reason why persons with this condition were interviewed as part of this study. methodology top ↑ research setting this study was carried out in traditional authority (ta) nankumba and ta mponda in mangochi district in southern malawi. mangochi lies on the shores of lake malawi and is situated 170 km north of blantyre, the commercial capital of malawi and about the same distance from lilongwe, malawi’s capital city. it has a population of 803 602 people; 387 072 are male whilst the rest are female (national statistical office 2008). the study was done in two fishing villages along lake malawi, three villages inland and around the headquarters of ta nankumba, and one village at mangochi district headquarters, which is part of ta mponda. fishing and farming are the major sources of income for the district. research methods, research design and data collection whilst the wider study had both qualitative and quantitative components, this article only uses the qualitative data. the qualitative approach enabled us to explore people’s perceptions about the causes, treatment and prevention of various forms of disability and how having a disability impacted on households. the primary informants were persons with disabilities or their guardians, aged 18 years and above. for children with disabilities, interviews were instead conducted with their parents or guardians. a wide range of people with disabilities were interviewed, namely those with physical impairments, persons with albinism, persons with hearing impairments, persons with visual impairments, persons with intellectual disabilities and also with elderly men and women. village headmen, community health workers and persons with disabilities assisted in identifying informants. a snowball method was also used to identify people with disabilities. this methodology involves informants referring the researcher to other informants, who are then contacted by the researcher. these informants in turn refer the researcher to yet other informants, and so forth (noy 2008). at community level, there are not many health workers, hence these were identified by asking community leaders and other members of the community to help the research team identify these workers. in total, 63 interviews were done with people with various forms of disabilities and 8 of these were with persons with epilepsy. the age range for these persons with epilepsy was between 4 years and 30 years: six persons were below 18 years and only two persons were above 18 years of age. all interviews were done with guardians of persons with epilepsy even for those who were above 18 years of age. this was mainly because they could not express themselves properly. a 30-year-old woman who had two children and was being taken care of by her grandmother. all the interviews were conducted by the researchers from malawi and norway. two group discussions were also conducted: one with mainly men with disabilities or parents of boys with disabilities (20 participants in this group), and another with women or parents of girls with disabilities (14 participants in this group). interviews were also conducted with both professional and unskilled health workers and there were 21 such interviews: 4 were with traditional healers; 6 with health surveillance assistants (hsas); 3 with traditional birth attendants; 2 with community health volunteers; 2 with medical doctors and the rest with orthopaedic technicians. hsas are the lowest cadre in the ministry of health, based at community level, and they have a catchment area of about 1000 people each (ministry of health 2011). the interviews with health workers were mainly from what kleinmann (1980) calls the ‘folk’ and ‘professional sectors’. the professional sector is composed of the organised healing professions and in this context provided by the ministry of health. the folk sector is the non-professional, non-bureaucratic, specialist sector, encompassing both sacred and secular healers, such as traditional healers, shamans and folk psychotherapists (kleinmann 1980). these interviews and group discussions were conducted in march 2009. persons with disabilities were asked about the type of disability they suffered from, their perceptions about the causes of their disability, where they sought treatment and the impact of having a person with a disability within the household. these same issues were explored with persons with epilepsy. study limitations the major limitation of this study is that it is based on only eight cases of persons with epilepsy, but this is not unusual in qualitative studies. the study nevertheless brings out the health seeking behaviour of persons with epilepsy. ethical considerations top ↑ the study received ethical approval from malawi’s national health sciences research committee (nhsrc) and the committee for medical and health research ethics in norway. the nhsrc is an institutional review board whose secretariat is in the ministry of health and draws membership from various institutions. all participants in this study were informed about its objectives and informed consent was obtained prior to the interviews. participants were assured of the confidentiality of the information they shared with the research team. their participation was voluntary and they were also at liberty to withdraw from the interview at any time they felt so. all the names used in this article are fictitious in order to protect the identity of informants. data analysis top ↑ in depth interviews with persons with disabilities were recorded and translated into english. these interviews were typed in microsoft word. the eight interviews with persons with epilepsy, or their caretakers, were analysed using content analysis. they were read several times and recurring themes were identified. for purposes of this article, the analysis focused on people’s perceptions about the causes of epilepsy, how persons with epilepsy seek health care, barriers to seeking care for this condition, and the impact of having a person with epilepsy in the household. the analysis of the data was done by the researchers themselves. results top ↑ perceptions about the causes of illness in the mangochi area where this study was conducted, epilepsy is commonly known as khunyu in the local language. the biomedical causes of epilepsy have been explained earlier but they are not universally accepted as communities have their own perceptions about the causes of this condition. in the current study, some guardians did not even know the cause of epilepsy. participant (p) 1, a mother of an 11-year-old boy with epilepsy, explained how her child developed epilepsy and how the family sought treatment:the epilepsy started in 2003. one day he fainted [kugwa khunyu] 10 times. she took him to the hospital because she thought it was malaria. the doctor at mangochi district hospital explained that the boy had epilepsy but the hospital did not have medication for epilepsy at the time so he advised them to go to a traditional healer. the traditional healer also did not have a cure for epilepsy and he did not give any explanation on what caused it. he only explained that it was the will of god and there was nothing he could do about it. they went back to the hospital after three years and the hospital has been giving them some medicines for epilepsy. at least the medication has helped because now he can go out and play with friends, which he could not do before. however, he still faints [amagwa] sometimes and he still cannot talk. (reported speech of an interview with p1) p1 did not know that her child suffered from epilepsy and it was only the doctor who told her that it was epilepsy. she therefore lacked knowledge about the disease. in this case even the traditional healer said that the disease that p1’s child suffered from, was the will of god. the fact that this traditional healer attributed p1’s son’s illness to the will of god does not imply that this is the only interpretation that people in mangochi use to explain the cause of epilepsy. another traditional healer (p2) said that epilepsy can also be caused by witchcraft; witches tend to put faeces of a mouse on the stomach of the new baby which is mixed with herbs. another healer in mangochi, p3, attributed epilepsy to the presence of too much foam in the stomach and that the onset of diarrhoea is a sign that the person with epilepsy is getting better. apart from witchcraft, the will of god and the presence of too much foam in the stomach, epilepsy was also said to be caused after experiencing serious illness. in the majority of cases interviewed in this study, the genesis of disability (including epilepsy) was preceded by serious illness and in most cases informants cited malaria as a cause of disability, as the case of p4’s son below demonstrates: p4’s son was okay at birth. he was born in 2004. he had very high fever some times and then he fell unconscious. his mother remembers that during one day in 2008 he fell unconscious 30 times and they did not know what caused the illness. when they went to the hospital, they were told that the child had malaria and he was given treatment but the situation never changed. after some time they were told by the doctor that it was khunyu [epilepsy]. (reported speech of an interview with p4) as was the case with p4’s son, it was reported that most of the other patients with epilepsy first suffered a serious illness such as malaria. even after being given treatment, the fits or seizures did not stop. seeking treatment for epilepsy persons with epilepsy or their guardians were asked about where they had sought treatment for their condition. both modern health facilities and traditional healers were mentioned, as can be seen above in the discussion with p1, whose 11-year-old son had epilepsy. whilst people may not want to go and consult traditional healers, the general lack of medicines tends to force people to seek treatment from traditional healers, as was the case with p1’s son. it is also striking that it was a health worker who advised p1 to seek traditional medicine for her son. the treatment that persons with epilepsy get from the health facilities is quite effective as it reduces the fits but it does not take them away completely. several informants said that if they forgot to administer the medicine then the patients would get fits right away. the traditional healer who said that epilepsy can be caused by witchcraft, explained that he could easily cure such type of epilepsy by rubbing traditional herbs on the person with epilepsy, and that this was effective so long as treatment is sought before the age of two. he did not explain why this was the case. purging is also an important part of the process of healing, as was also mentioned by a traditional healer. this was especially the case as it was perceived that epilepsy can also be as a result of too much foam in the stomach. barriers to seeking therapy for epilepsy this study also found quite a number of barriers to accessing therapy for epilepsy. the case of p1’s son illustrates that one of the barriers to seeking care for epilepsy is the general lack of medication in modern health facilities. the doctor told p1 that there were no medicines in the facility for epilepsy; hence she had to go to a traditional healer who could not help either. this was also highlighted by a number of informants in this study. distance to health facilities is also a major determinant of therapy seeking for persons with epilepsy and their guardians, as can be seen from a summary of discussions with p5, the father of a 23-year-old man with epilepsy:the family of p5 gets the medication they need for free from the health facility. the only problem is that they have to travel as far as mangochi district hospital every wednesday to get it. the father has tried asking if it would be possible to get it from the nearby clinic. it worked once when they got it from the neighbouring clinic but after this they were told that they had to go back to the hospital from that time on. this is a considerable strain both on time and the economy. (reported speech of an interview with p5) p5 resides in chembe village, ±50 km away from mangochi district hospital where they have to get the treatment for epilepsy. the medicines for epilepsy are not available at the nearby clinic. arrangements have been made to have these medicines at the clinic, but this has either been discontinued or the supply of medicines to health facilities has been erratic. whilst health services are provided free of charge in malawi, including accessing treatment for epilepsy, the cost of transport affects access to treatment, as is the case with p5’s family. the issue of transport was also illustrated by p6, a woman with a granddaughter with epilepsy in msaka village in the same district: the birth of p6’s granddaughter was normal, but she suffered from epilepsy already as a child and she still does. she gets medication from monkey bay hospital. the medication reduces the fits but does not take them away completely. the problem with getting the medication is that they have to go to monkey bay to collect it. this is a long way to go and they do not manage to get there regularly. but they know a nurse who works there and who comes from their area and she sometimes brings the medication to them. (reported speech of an interview with p6) persons with epilepsy need to take medication regularly in order to prevent seizures. because of distance, as is the case with p6’s granddaughter and other persons with epilepsy, this is not always possible; hence there is failure to adhere to treatment which results in the patients having frequent seizures. the presence of a health worker in the facility who is a relative or someone from home helps in terms of ensuring that medication is available. in addition to distance to health facilities, p1 also reported that: there is congestion at the hospital. as such, when the child has fainted or when he is in serious condition, they still have to be in the queue until it is their turn to be assisted. sometimes there is a shortage of drugs, although most of the time the drugs are available. sometimes they have to hire a bicycle and pay $0.17 because the mother cannot manage to carry him on her back and take him to the hospital. (reported speech of an interview with p1) congestion in health facilities, as mentioned by p1, is one of the problems that she experienced in seeking care for treatment of epilepsy. this means that the patients and their guardians have to wait for a long time before being seen by a health worker at the health facility. what we see, therefore, is that from the eight cases examined in this article, both modern and traditional medicine are used in the treatment of epilepsy and, because they have experienced the failure of traditional medicine, most of the patients or their guardians are taking modern medicine. however, the facilities are situated quite far away, and in some cases transport is not available for the patients and their guardians to go there. impacts of epilepsy on the household during interviews, informants were further asked about how having a patient with epilepsy affects the family. in a discussion with p7, she summarised the daily life of her son (8 years) who has epilepsy as follows: there is nothing that he does. when he wakes up he sits down the whole day. in terms of hygiene, toilet, dressing, et cetera, the mother does everything for him. she feeds him, washes his clothes and clothes him. she says that his right side is too weak to do anything. she also reports that he does not participate in any social activities and does not go to school because she feels he can’t do anything such as write or talk and also it would be difficult in terms of transportation to school because he can’t go there on his own. (reported speech of an interview with p7) p5’s son was a special case as he was also paralysed on the right side of his body and he could not talk. his mother summarised quite well the lives of some people who have epilepsy. everything has to be done for them, their participation in social activities is restricted and the chances of going to school are almost non-existent as they would always need to be escorted. like some other patients with epilepsy, p8’s son started school and was doing quite well but when the seizures were severe they affected him and he eventually dropped out of school. p8 reported that when their son has long seizure episodes, he becomes restless and wanders around and behaves like a ‘madman’, hence his parents have to be with him constantly for at least two days after a seizure. in some cases, some of the children with epilepsy have not been to school because their parents think that there is no one to look after them at school if they have an epileptic episode. there are other patients, however, who are able to do some things on their own, as was the case with p5’s son, who was able to do some simple things around the house including washing and dressing himself and did not need to be reminded. the presence of a person with epilepsy in the home also affects household productivity, for example: p7’s mother said that when her son’s situation was very critical, not a single member of the household could go to the garden or do any ganyu [piecework]. they stayed at home and looked after the boy. she said that she could not go out to work or look for work since she always had to stay at home and look after her son. (reported speech of an interview with p7) in another such case, p9, the father of a son with epilepsy, for example, absented himself from work to care for his child, especially when the condition was severe. in communities where this study was done, poverty is widespread, as is the case with the rest of the country. whilst household members can absent themselves from work, in some cases it is not possible to do this. many children with disabilities, including those with epilepsy, are in some cases left alone because there is no one else in the household to care for them. in an interview with p10 in mangochi, she said that her child did not walk and had epilepsy. she was left alone whilst she (the mother) went to the field: the girl was left alone, locked up in the house from 06:00 when the mother went to the fields until around 09:00. if the mother found food she came back home, otherwise not. the younger sister was left outside the house to play with the other children. the mother said there was no one they could ask for help because there was no one who would have agreed with their heart. she said the girl did not cry when she was alone. the mother worried about her when she had to leave her. (reported speech of an interview with p10) p10 had no choice but to go and work and make ends meet for the family. some of the parents used to run small-scale businesses but they ended up using their capital whilst seeking treatment: on how the child’s illness has affected her life, p4 said that she used to run businesses such as selling rice, tomatoes and groundnuts. she bought rice in bulk from zomba whilst the tomatoes were bought in dedza. she bought groundnuts in cape maclear. she used to sell them at the local market in chembe village every day. she also used to take care of the home, washing, kuzira (smearing the floor with mud), cooking and ironing. her husband used to construct kitchens and toilets amongst other duties. when their child suffered from epilepsy, they used all the money that they had for running their business seeking care for the child. because of the child’s sickness, they were poor at the time of the study – they had no food and no clothes. in addition, the child was sick quite often and they could not adequately take care of him and the rest of the family. sometimes they could do ganyu [piecework] but the money was spent on seeking care for the child. the ganyu they did included working in other people’s fields and fetching firewood and selling it. there was no one who helped in caring for the child. her mother-in-law had goats but she sold all of them to help the family when the child was admitted. she used to help by giving the family money and food but at the time of the fieldwork all the goats had been sold and she could not help them anymore. (reported speech of an interview with p4) p10’s business closed down, as she used the money whilst seeking care from traditional healers and modern health facilities. there were also others whose businesses closed down because they spent all the money on seeking care. whilst some would like to engage in business, they fail to do that because they always have to be with their child with epilepsy. p10 therefore suggested that in order to address the problems she was facing, she needed a loan to establish an income-generating activity. in addition to the problems that the households with persons with epilepsy experience, people with epilepsy themselves also experience problems, especially discrimination, as narrated by p1: the child is chased from other homes because other households feel like the child wants to beg some food, so they do not even offer him any food. some people also say that he is ugly and stupid because he has saliva coming out of his mouth. as such, the child is discriminated against. he is even chased by friends when he tries to play with them because he cannot talk so he cannot communicate well with his friends. when this happens, he cries and the mother has to take him away from his friends. (reported speech of an interview with p1) this case demonstrates that there is stigma and discrimination associated with epilepsy. this section has demonstrated that having a person with epilepsy within the household has wide ramifications especially if the disorder is not controlled. improving access to treatment can minimise these impacts of epilepsy on households. discussion top ↑ in terms of knowledge about epilepsy in the study area, there were a number of informants who reported that they did not know about epilepsy hence they were just informed by the doctors after diagnosis that their children had this condition. it is not only community members who may not know about epilepsy but health workers themselves as well. p4’s case also demonstrates that there can be misdiagnosis at the health facility: at first the health workers told parents that the child had malaria and then later they said that it was epilepsy. in other countries such as tanzania, researchers have also found that late or misdiagnosis is a major challenge in the management of epilepsy and that this delays the onset of treatment until the time it is properly diagnosed (mushi et al. 2012). in the study, some caretakers said that their children suffered from epilepsy after suffering from a serious illness for a long time. the sue ryder foundation is involved in the provision of treatment to persons with epilepsy in southern malawi and reports that 39% of the people with epilepsy cared for by their nurses had cerebral malaria in early childhood (sue ryder foundation 2009). it was a traditional healer who said that the disease can also be caused by witchcraft. a more recent study done by the federation of disability organisations in malawi also found that epilepsy is believed to be linked to witchcraft and spirits (amos & wapling 2010). a number of studies have been done in other african countries which have found that witchcraft is believed to be a cause of epilepsy (mushi et al. 2012). baskind and birbeck (2005) found that most traditional healers in zambia believed that witchcraft was to some extent responsible for seizures. in some parts of cameroon these beliefs were widespread and 50% of the respondents actually attributed epilepsy to witchcraft (njamnshi et al. 2009). the perception is that epilepsy caused by witchcraft can only be cured by traditional healers. another traditional healer reported that epilepsy is also caused by too much foam in the stomach. this finding is similar to that of nkwi and ndoko (1989), who did their study amongst the bamileke of cameroon, amongst whom epilepsy is perceived as a saturation of foam in the stomach which goes to the head and makes the eyes turn and the victim fall. hence, treatment requires that the process of purging should be initiated with traditional medicine to expel existing foam from the stomach (nkwi & ndonko 1989). it was also observed that a traditional healer attributed epilepsy to the will of god. in this case, the onset of epilepsy is not due to witchcraft and other supernatural forces but that the disease just comes, meaning that it is naturally caused. the onset of epilepsy in this case is ‘merely part of the existential reality of the world’ (friedson 1996) or ‘part of the expected order’. ngubane (1977) calls such diseases ‘natural illnesses’, because they just happen and do not result from personal malice or the fault of the patient. some anthropologists have called such diseases illnesses of god: not that it is god who causes them but that they just happen (feierman 1981). the traditional healer attributed p1’s son’s illness to the will of god, implying that it was a natural illness. other studies (e.g. mushi et al. 2012) have further attributed epilepsy to a disease that is inherited, but none of informants in the current study mentioned this. other causes of epilepsy that have been identified in malawi include inheritance, worries and brain tumours, amongst others (chilopora et al. 2001). in swaziland, reis (1994) describes a belief in which a snake in the belly causes convulsions by raising itself in the body. in terms of treatment, a traditional healer mentioned that initiating purging is an important component of healing. other studies have also found that in some african societies, including malawi, epilepsy is believed to be caused by something like an insect that moves around in the stomach and that traditional healers use a concoction made from roots to induce purging and vomiting (watts 1989; whiteley 2005). as diop et al. (2003) report, it is evident that the social cultural perception of the causation of disease is one of the major determinants of therapy seeking for patients with epilepsy (diop et al. 2003). the results from the current study and other studies done in africa show that there is double utilisation of western and traditional medicines by most people suffering from epilepsy. for example, mushi et al. (2012) in tanzania, also found that both modern and traditional forms of treatment are used during episodes of epilepsy and that most people started by taking children with epilepsy to the health centre and when it persisted they went to faith or traditional healers. the majority of persons with epilepsy tend to seek professional care very late. this study also found quite a number of barriers to accessing therapy for epilepsy. the case of p1’s son illustrates that one of the major barriers to seeking care for epilepsy is the general lack of medication in modern health facilities. the doctor told p1 that there were no medicines in the facility for epilepsy; hence she had to go to a traditional healer, who could not help either. in a study done in the burns unit at queen elizabeth central hospital in blantyre, southern malawi, which caters for about 4 million people, it was found that 4 out of 12 patients examined had epilepsy and they sustained burns during epileptic fits near a paraffin lamp or an open fire. none of the patients with epilepsy were on any anticonvulsant medication owing to lack of drugs (virich & lavy 2006). in some cultures, burns from a person with epilepsy falling into a fire are looked at differently, for example, in zimbabwe, mugumbate and mushonga (2013) found that if persons with epilepsy are burnt in fires, they will not respond to treatment. congestion in health facilities, as mentioned by p1, is one of the problems that is experienced in seeking care for treatment of epilepsy. this makes patients and their guardians wait for a long time at the health facility before being seen by a health worker. in a study done in lusaka, zambia, frankenberg and leeson (1976) found that some traditional healers are consulted because, amongst other factors, their services were available without queuing. the experience of long queues can make some people consult traditional healers. it is evident that the therapy-seeking process for epilepsy is not a random process but an ordered path of choices responding to negative feedback. as crandon-malamud (1991) argues, boundaries between different therapeutic options are not rigid, as people move from one form of therapy to another. this study has also shown that access to education is a problem for children with epilepsy as they would always need to be escorted. some patients with epilepsy, such as p8’s son, start school and do quite well, but in his case, when the seizures were severe, they affected him and he eventually dropped out of school. a study conducted by the federation of disability organisations in malawi actually shows that 69% of respondents with epilepsy have never been to school. of the 31% that attended, just 0.3% went beyond secondary school level. this decreases their chances of employment, hence increasing, their likelihood of being poor (see amos & wapling 2010). mushi et al. (2012) in tanzania and komolafe et al. (2012) in nigeria also found that children with epilepsy did not attend school regularly because of on-going seizures, or they had fewer years of formal education. as has been demonstrated in this study, some parents could not work just because they had to care for the child with epilepsy especially when the condition was severe. priority is therefore given to the care of children with disabilities, as was also seen in a study done in tanzania, where mushi et al. (2012) found that the carer’s ability to work and provide for the family, is impaired. poverty is widespread in the communities where the current study was done, as is the case with the rest of the country. a recent national survey found that 50.7% of households were living below the poverty line (national statistical office 2012). in contexts where poverty is widespread, medicines for epilepsy are unavailable and seizures are common, the impact at household level can be quite significant as households can be pushed into poverty, as demonstrated above. epilepsy also carries with it an enormous amount of stigma and discrimination, as has been demonstrated in this study. this is mainly because of the prevailing misconceptions about how epilepsy is caused. in many communities, children will not play with fellow children with epilepsy. in cameroon, njamnshi et al. (2009) report that nearly a fifth of their respondents said that they would object to their children associating with persons with epilepsy. nkwi and ndonko (1989) and njamnshi et al. (2009) have even found that epilepsy can become a social stigma as people will refuse to marry into a family where there is a case. whilst some friendship can be maintained, in some cases it is disrupted and children with epilepsy are isolated (mushi et al. 2012). basking and birbeck (2005) explain that people actually believe that seizures are contagious and are spread through saliva, urine and faeces, and the fear of contagion causes stigma. conclusion top ↑ this study, as is the case with other studies that have been done in sub-saharan africa, generally demonstrates that misperceptions about the causes of epilepsy exist in malawi. the prevailing cultural beliefs influence the way persons with epilepsy and their families will seek health care. as has been demonstrated in this study, beliefs about witchcraft as a cause of epilepsy are widespread, and since it is believed that diseases caused by witchcraft cannot be cured with western medicines, persons with epilepsy will seek care from traditional healers as well. other factors such as widespread poverty, misdiagnosis by health workers, the lack of medicines for epilepsy in the health centres and distance to health facilities tend to hinder access to effective epilepsy treatment.as a result of these factors, a significant proportion of persons with epilepsy in resource-poor countries such as malawi are not on treatment. the lack of medicines makes persons with epilepsy suffer from frequent seizures, which negatively impacts on households. despite prevailing barriers to accessing treatment for epilepsy, an earlier study conducted in malawi demonstrated that it is possible to address existing barriers. watts, working at a hospital in northern malawi and using a combination of public education, simple treatments, regular reviews and ensuring an adequate supply of free drugs, developed a community-based epilepsy treatment programme from nothing to treating 461 patients over the course of two years (watts 1989). such a community-based approach can be used to close the treatment gap for epilepsy as is being advocated by the global campaign against epilepsy. acknowledgements top ↑ we are grateful to the norwegian research council, programme for global health, for providing funding for this project, which enabled the research team to conduct the research upon which this article is based. we also wish to thank all the research assistants who participated in the collection of both qualitative and quantitative data upon which this article is based. competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this article. authors’ contributions all authors, a.m. (university of malawi); s.h.b. (sintef); l.g. (sintef); y.k. (sintef); and b.i. 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brazzaville. word health organization (who), 2005, international classification of functioning, disability and health, who, geneva. word health organization (who), 2010, mental health and development: targeting people with mental health conditions as a vulnerable group, who, geneva. word health organization (who), 2012, epilepsy: fact sheet number 999, viewed 23 july 2013, from http://www.who.int/mediacentre/factsheets/fs999/en/ abstract introduction research methods and design results insights from the data discussion conclusion acknowledgements references footnote about the author(s) esther breffka department of clinical speech and language studies, faculty of arts, humanities and social sciences, trinity college dublin, university of dublin, dublin, ireland department of geography, faculty of science, technology, maths and engineering, trinity college dublin, university of dublin, dublin, ireland caroline jagoe department of clinical speech and language studies, faculty of arts, humanities and social sciences, trinity college dublin, university of dublin, dublin, ireland susan p. murphy department of geography, faculty of science, technology, maths and engineering, trinity college dublin, university of dublin, dublin, ireland belestie b. tsegaw department of public health, faculty of public health, health care, addis continental institute of public health, addis ababa, ethiopia department of psychology, faculty of behavioral science, social studies and humanities, university of gondar, gondar, ethiopia citation breffka, e., jagoe, c., murphy, s.p. & tsegaw, b.b., 2023, ‘restricted participation: drivers, experiences and implications of disability stigma in ethiopia’, african journal of disability 12(0), a1085. https://doi.org/10.4102/ajod.v12i0.1085 note: additional supporting information may be found in the online version of this article as online appendix 1. original research restricted participation: drivers, experiences and implications of disability stigma in ethiopia esther breffka, caroline jagoe, susan p. murphy, belestie b. tsegaw received: 28 may 2022; accepted: 10 oct. 2022; published: 23 jan. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: community-based inclusive development (cbid) acknowledges society’s critical role in supporting the active participation of persons with disabilities. however, research on how this approach relates to the context-sensitive socially situated barriers of disability stigma is underexplored. objectives: this study aimed to understand the drivers and experiences of disability stigma in ethiopia, from the perspective of persons with disabilities engaged in cbid programmes, and to establish how disability stigma acts as a barrier to participation. methods: an inductive methodological approach guided the research design. mixed methods were used including a narrative review of disabilities studies literature, 16 semi-structured interviews with persons with disabilities, and a quantitative survey of 970 persons with disabilities across three communities in ethiopia. results: informed by theories of epistemic justice, this study identified specific indicators of meaningful participation and examined how these relate to experiences of disability stigma. the study found that the participation of adults with disabilities in society is restricted across different areas of life. misconceptions about the causes of disability and social perceptions regarding the capacities of persons with disabilities are found to exacerbate stigma and act as a barrier to participation. conclusion: targeted efforts to challenge internalised norms and harmful beliefs within cbid approaches are required to address disadvantages arising from embedded disability stigma. contribution: this study makes conceptual, empirical and practical contributions that advance insights into the relationship between disability stigma and participation in ethiopia and the dimensions of epistemic justice relevant to understanding the nature and drivers of disability stigma. keywords: disability; disability stigma; community-based inclusive development; disability inclusion; social inclusion; epistemic injustice; disability rights; participation. introduction the united nations (un) convention on the rights of persons with disabilities (crpd) (2006) identifies the full and effective participation of persons with disabilities as one of its grounding principles. community-based inclusive development (cbid), with its roots in community-based rehabilitation, seeks to operationalise this principle through the model of a human rights-based approach. cbid adopts a holistic approach, activating the role of communities to reduce barriers that restrict full participation (cbm international 2020; world health organization [who] et al. 2010:4). most research on cbid has focused on the interrelatedness of domains such as health, inclusive education and livelihoods. although disability stigma has emerged as a core barrier to the full participation of persons with disabilities in society (mostert 2016; rohwerder 2018), research on the role and effect of stigma in the context of cbid has been limited, and research on cbid, in general, is lacking (white, saran & kuper 2018). considering that cbid aims at building inclusive communities (cbm international 2020; who et al. 2010:4ff), there is an urgent need to better understand the experiences and effects of disability stigma on the participation of persons with disabilities in community life. further questions of whether disability stigma creates a form of social powerlessness that systematically disadvantages persons with disabilities in their opportunities to meaningfully participate in society are also underexplored. previous studies have investigated the relationship between disability, stigma and disability rights; however, their focus is based on assumptions around the existence of disability stigma rather than critically interrogating the drivers and experiences associated with this as experienced by persons with disabilities (grischow et al. 2018; mostert 2016; rohwerder 2018). other disability-related literature targets predominantly health and education (mostert 2016; white et al. 2018:21ff.), and interventions for specific disabilities (cf. hartog et al. 2020; heijnders & van der meij 2006; saran, white & kuper 2019). furthermore, it is widely recognised that disability is primarily analysed from a medical rather than from a human rights perspective, meaning that topics such as advocacy, empowerment, participation and social inclusion are underrepresented in the existing literature (white et al. 2018:21ff.). against this backdrop, this research aims to gain a better understanding of the experiences of persons with disabilities with regard to disability stigma and the implications for their participation in society. following the application of the social model that regards disability as socially constructed, this research is based upon the understanding of disability stigma as laid out by goffman (1963:13ff.) and utilises the nuanced framework by link and phelan (2001) that integrates the dynamics of societal power structures as essential components of stigma. stigma here is defined as ‘[t]he co-occurrence of its components – labelling stereotyping, separation, status loss, and discrimination – and further indicate that for stigmatisation to occur, power must be exercised’ (link & phelan 2001:363). to analyse the relationship between disability stigma and participation, the literature commonly refers to four different types of stigma, depending on the actors involved in the process of stigmatisation: ‘felt stigma’ refers to the fear of stigmatisation (individual level) (brown, macintyre & trujillo 2013:50), ‘enacted stigma’ as the act of discrimination (directed interaction among individuals with and without disability) (brown et al. 2013), ‘public stigma’ as the (re)production of negative attitudes (societal level) (amoah 2016:42) and self-stigma as the process of internalising, accepting and identifying oneself with these negative associations (feedback from society to individual) (brown et al. 2013). recognising the nature of unequal relations of power and knowledge (kidd, medina & pohlhaus 2017:303), this research engages with theories of epistemic injustice to understand how these relations influence participation. first articulated in the work of miranda fricker, epistemic justice entails two specific types of harm that can be experienced by a person (fricker 2006) or group (anderson 2012), in their capacity as a knower – testimonial and hermeneutical injustice. according to fricker (2007:1), ‘testimonial injustice occurs when prejudice causes a hearer to give a deflated level of credibility to the speaker’s. this form of injustice carries implications for those seeking meaningful participation in community life – that their voice and perspectives be recognised as credible and listened to: [h]ermeneutical injustice occurs at a prior stage when a gap in collective interpretive resources puts someone [or group] at an unfair disadvantage when it comes to making sense of their social experience. (fricker 2007:1) this form of injustice gives us a window into understanding the dynamics of disability stigma, how this is embedded in cultural practice, histories and norms, and places persons with disabilities at an unfair disadvantage from the outset. the power to make sense of and give meaning to one’s own social experience strongly relates to one’s position in society. it is influenced by the distribution of power and knowledge in society (fricker 2006). full participation in social institutions (anderson 2012), then, would require the recognition of the value and credibility of the testimony of persons with disabilities and also an active role for persons with disabilities in shaping understandings of their own social experiences, rather than having these understandings shaped by pre-existing social prejudice or other dominant groups. given that persons with disabilities are often characterised as being socially powerless (nepveux & beitiks 2010), this study examines whether the case of disability stigma can be described as a form of systematic hermeneutical injustice, whereby systematic hermeneutical injustice – different from incidental hermeneutical injustice – originates from ‘a structural prejudice in hermeneutical resources’ (fricker 2006:100). thus, the use of systematic hermeneutical injustice can be described as a tool to explain the nature of persons with disabilities’ exclusion through linking disability stigma and assumed capacity to participate. this helps us to explain why even in circumstances where participation takes place, persons with disabilities can find that their voices are not heard, and their testimony is not given sufficient consideration and weight. based on this theoretical foundation, this research applies the concept of systematic hermeneutical injustice from its origin within feminist epistemology (giladi & mcmillan 2018:1) to another dimension of marginalisation disability. hence, this study critically interrogates how the participation of persons with disabilities in society is influenced by pre-existing, socially embedded unequal relations of power and knowledge. the study seeks to answer the following question: how does disability stigma affect the participation of persons with disabilities? we examine this through a case study of the experiences of persons with disabilities in the south gondar zone of ethiopia. we begin with a narrative review of the literature on disability stigma to explore what is known about the underlying drivers and experiences of disability stigma. we then share results and insights from a series of interviews and survey data gathered with and from persons with disabilities to explore how disability stigma is perceived in ethiopia and how this affects active participation in society. the study makes an empirical contribution to knowledge regarding the specific insights and experiences of disability stigma and barriers to participation of persons with disabilities in ethiopia. the practical and theoretical implications of this contribution are also explored. research methods and design this is a transdisciplinary study engaging academic researchers with an international disabilities organisation (ido), locally based disabled persons’ organisations (dpos), and persons with disabilities engaging with these agencies. the results shared here are part of a wider study designed to identify opportunities for improvement of cbid programmes in ethiopia. based on an inductive approach, the research design and data collection unfolded over three phases, beginning with project meetings in ethiopia in 2019. here, the overarching design of the research was developed, and key areas of focus agreed. the second stage of the research entailed a survey of persons with disabilities across three communities in the south gondar zone of ethiopia, namely debre tabor, dera and wereta. all communities are actively engaged in cbid projects implemented through local dpos. the areas are characterised by a relatively high level of poverty and weak infrastructure, are largely rural communities engaged in subsistence agriculture, with traditional social systems, and ethnic belonging to the amhara. the third stage entailed qualitative data collection through semi-structured interviews, with members of the community with disability, specifically on experiences of disability stigma and participation. although disruptive, the onset of coronavirus disease 2019 (covid-19) presented an opportunity to more actively engage dpos and persons with disabilities in the data collection processes. local enumerators, all of whom self-identified as persons with disabilities, where trained in data collection techniques and were the leaders in collecting the insights from within their own communities. data collection narrative review of the literature to systematically select the most relevant literature, a five-stage process was applied. firstly, identifying literature via the use of research engines and citation tracking; secondly, applying accessibility criteria; thirdly, categorising the literature to assess its eligibility; fourthly, screening the literature to exclude non-topic specific literature; and fifthly, critical appraisal to ensure the literature’s trustworthiness (virendrakumar et al. 2018). in keeping with a structured approach to literature synthesis and to maintain transparent links between the synthesis data and the synthesis reported (campbell et al. 2019), the data sources are cited in the analysis that follows. a full list of data sources used in the narrative synthesis is listed in online appendix 1, and those cited in the text also appear in the reference list. for the identification of primarily academic literature, the following search engines were used: apa psycarticles, pubmed, science direct, the host university’s library search function (stella search), and web of science. google scholar was used to extend the scope to non-primarily academic articles, including grey literature, policies and legal documents. policies and legal documents were further manually retrieved from the office of the united nations high commissioner for human rights’ anti-discrimination library, given the lack of a precise keyword search option. documents were accessed by using the keyword function: (‘disability’ and ‘ethiopia’ and ‘stigma’ and [‘rights’ or ‘social inclusion’ or ‘social exclusion’ or ‘participation’]). this choice was reasoned by the study’s focus on disability-related stigma. the inclusion of grey literature and legal materials was necessary to gather insights and to balance the lack of academic research on this topic in low-income locations. literature was not limited by data of publication. primary data collection the second component of the study involved a survey across the three communities. the survey was administered between december 2019 and january 2020 using purposive sampling, with a maximum variation sample in terms of disability, gender and geography. all participants were over the age of 18. the data collection tools were developed with reference to the washington group questions (short set; wgq-ss), the cbm monitoring of inclusion, the university of sydney and the cheshire foundation action for inclusion bahir-dar project office survey tool. administration of the questionnaire with in-depth interviews was conducted with 970 adults with disabilities (509 men and 461 women). types of disability were grouped by functional difficulties based on the adapted wgq-ss and classified into seven categories (table 1). table 1: survey participants. the third stage of the study involved qualitative data collection through semi-structured interviews with 16 adults with disabilities in the respective settings. these took place between may and july 2021. participants were selected in collaboration with local dpos. the structure of the interview and the choice of questions were guided by the ‘funnel’ principle, moving from broad and open to more critical and narrow questions, including content-mapping and content-mining questions as well as in-depth probing. following the literature review and research question, a topic guide and a semi-structured interview guide on participation were created and discussed with the co-researchers. an accessible version of the wgq-ss was compiled in the local language for the purpose of disability description. in close consultation with the practitioner organisations, four persons with disabilities were chosen as co-researchers based on the following requirements: lived experience of disability, dpo membership, and sensitivity around disability and gender issues. all co-researchers were adults in the age range of 18–50 years old. interviews were conducted in the local language, amharic, and translated into english for analysis. data analysis this narrative review critically examined ‘how and why incidents are storied, not simply the content to which language refers’ (riessman 2008:11). the use of content analysis allows for systematic framing of existing models, focusing on extracting the main drivers of disability stigma and types of participation restrictions. thematic coding was utilised to identify themes and categories across the literature by identifying the main themes, recognising subsequent themes, sub-grouping the literature and identifying the main concepts. descriptive analysis of survey data using a subset of questions was used to explore if and to what extent disability stigma is perceived as restricting participation in society for persons with disabilities. narrative analysis of the qualitative data was used to explore the individual experiences of persons with disabilities around participation. the data were coded and thematically grouped using microsoft word and excel. coding from the international classification of functioning, disability, and health (icf; who 2017) was used as an analytic tool, which can support the human rights approach to disability as it incorporates impairment and environment to assess disability. within the icf participation is measured around multiple domains. for the analysis of this study, the authors focused on the domains of self-care; domestic life; interpersonal interactions and relationships; major life areas; and community, social and civic life (icf chapters p5–p9). analysis was based on the frequency of participation and contextual factors identified in the literature, meaning that values do not indicate the extent of influence, but rather the frequency of reporting within the reviewed data. ethical considerations ethical approval was granted from ethics school of natural sciences (sns) research ethics policy school of natural sciences, trinity college dublin. the institutional review board at a large irish university approved the research (online appendix 1). data collection was undertaken with respect to the common principles of ethical research, and enumerators were specifically trained for the purpose of this study given that this research engages with participants at risk of vulnerability. research participants were informed about all components of the project and their right to privacy, anonymity and access to data. enumerators explained that participation was voluntary and that participants had the right to withdraw and ask for further explanations at any stage of the research. when participants were informed and consented to participation – verbally or written – and their safeguarding ensured, the interview process was undertaken. the sensitive nature of this research poses limitations that require consideration. this study engages with perceptions and social constructions, which require reflection on power differentials, particularly concerning disability, socio-economic background and historical racial inequalities that can influence the research process. the researchers are aware of their positionality as international expert practitioners and researchers, collaborating with locally based practitioners and communities. consequently, significant efforts to instil critical reflexivity into the research process have been made. table 2: interview participants. to minimise power imbalances and encourage persons with disabilities in their capacity as knowers, this research strives to focus on narratives from persons with disabilities themselves. a key challenge for the research team was to avoid the reproduction of disability stigma through the research process. to minimise the extent to which this research replicates the widely accepted recognition of persons with disabilities as particularly marginalised and vulnerable, it is set in an emancipatory frame (barnes 2009:461ff.), meaning that the perspectives and knowledge of persons with disabilities shaped the research design and outcomes. it actively recognised and respected all participants as active knowers and those best positioned to make sense of their own social experiences. this research sought to counter what nepveux and beitiks (2010) refer to as the tendency of western neo-colonial narratives to depict african persons with disabilities as inferior. to decolonise the research process (ndimande 2018), research participants were interviewed by local researchers in the local language and in close consultation with local practitioner organisations, including local dpos. results narrative synthesis of literature after the initial search of academic databases and grey literature, 219 documents were retrieved. through an application of the inclusion criteria, 29 texts were selected for review (figure 1). figure 1: flow diagram of the literature selection process. the 29 selected documents included 20 academic research articles, grey literature sources and three legal documents. almost half of the documents can be attributed to the social sciences, with the remaining split between a human rights-based approach and the medical approach. initial review of the articles indicates that recognising disability stigma as a barrier to persons with disabilities’ legal rights entitlements or to the severity of disability remains under-researched. most of the articles focus on experiences around disability stigma as social stigma, with a focus on disability in relation to persons with mental disorders. the focus of disability type may be rooted in the widely accepted view that persons with mental disabilities are especially vulnerable to disability-related stigma (rohwerder 2019a). five umbrella factors can be identified from the literature (table 3), which appear to be non-exclusive and relational. lacking awareness describes missing knowledge and interest about disability. misconception about the causes encompasses misdeed of persons with disabilities, misdeed of ancestors, supernatural forces, for example, evil spirit or witchcraft, punishment from god or curse of god, and other causes. fear of negative impact when contact with person with disability defines a person’s negative attitude or discriminatory behaviour against persons with disabilities because of being afraid of negative implications, for example, status loss resulting from contact with persons with disabilities. assumptions about persons with disabilities include disbeliefs about persons with disabilities’ ability, behaviour and nature. discriminatory policies refer to legislation that contributes to unequal treatment of persons with disabilities compared with persons without disabilities and derogatory language used within. within the literature reviewed, the highest explanatory power (in terms of the highest frequency of reporting) is attributed to a lack of awareness and misconceptions about the causes of disability. underlying traditional beliefs and social norms were most commonly cited as origin of misconceptions, predominantly the assumption that supernatural forces or punishment from god led to an impairment. however, not all traditional beliefs result in negative perceptions of disability (cf. mostert 2016:9). table 3: summary of the literature. while the literature acknowledges social norms and traditional beliefs as general driver of disability stigma, less effort has been made to disaggregate the data and to derive disability-specific patterns (grischow et al. 2018; mostert 2016; rohwerder 2018). public stigma of persons with disabilities, for example, results from different beliefs. persons with mental disorders are often misassociated with dangerous or unpredictable behaviour (ebuenyi et al. 2018; habtamu, alem & hanlon 2015; mfaofo-m’carthy & grishow 2017; mostert 2016; rohwerder 2019a, 2019b; spittel, maier & kraus 2019; stangl et al. 2019; surur et al. 2017), whereas persons affected by leprosy are perceived as not hygienic and infectious (amoah 2016; rohwerder 2018; stangl et al. 2019). contextual factors: facilitators and barriers following from the identification of key themes within literature, the icf was utilised to translate these into environmental and personal factors to analyse more systematically what type of factors appear to drive disability stigma. table 4 details which of the icf environmental chapters were predominant within the reviewed literature by health condition (icd-11; who 2019). findings from the literature support the assumption that attitudes are a major concern in the lived experience of persons with disabilities. four (e1, e3, e4 and e5) of the five environmental chapters are explicitly stated as barriers to the participation of persons with disabilities. table 4: identification of environmental factors (international classification of functioning, disability, and health chapters) within reviewed literature. although products and technology (e1) are mentioned as a barrier, the focus in the documents reviewed is rather on the social aspects of disability. the counts allocated in support and relationships (e3) highlight that lacking support from the immediate family, community and people in authority negatively affect persons with disabilities and are often associated with higher internalised stigma. the reviewed literature provides clear evidence of social attitudes as barrier to and/or facilitator of participation. persons with disabilities experience negative attitudes at home in the immediate family circle, within their community, at work and from service providers. it is widely found that social norms and beliefs are particularly problematic and prevent participation (rohwerder 2019a, 2019b). services, systems and policies (e5) are also mentioned as negatively influencing persons with disabilities’ daily lives. this is particularly highlighted in terms of civil protection services, systems and policies, legal services, health services, systems and policies, education and training services, systems and policies, and labour and employment services, systems and policies. as a complement to the recognition of environmental factors, the icf incorporates personal factors as facilitators or barriers to a person’s functioning. yet, its operationalisation remains challenged by the absence of an exhaustive list, which often leads to siloed considerations of the personal and environmental dimensions. here, the authors try to dissolve those siloes by firstly identifying (a non-exhaustive list of) personal factors mentioned in the reviewed literature as barriers (negative value) or facilitators (positive value) to persons with disabilities’ participation (table 5) and secondly acknowledging overlaps between the personal and environmental factors. table 5: identified personal themes and factors to persons with disabilities’ participation within reviewed literature. within the reviewed literature, most explanatory power is attributed to the overarching theme of psychological processes of meaning-making, suggesting that processes of internalising stigma manifest and multiply the already existing effect of persons with disabilities’ social exclusion, as the excluding effect is compounded with a self-isolating effect (habtamu et al. 2015; mostert 2016; rohwerder 2020; tsegay et al. 2018). the distribution of personal factors gives further account to intersectionality in the context of disability, negatively affecting women with disabilities, as well as the interrelatedness between limited access to resources because of non-inclusive societal structures and systems and actual participation opportunities (arulanantham 2014; habtamu et al. 2015; mostert 2016; rohwerder 2018, 2020; tsegay et al. 2018; van‘t noordende, aycheh & schippers 2020). experiences of disability stigma: restricted participation the literature pointed to clear patterns suggesting that there are experiences of restrictions that are unique to persons with disabilities, that is, that are not experienced by their peers without disabilities (abah 2017). despite this recognition, knowledge regarding the extent and type of participation domain affected is still lacking (rohwerder 2018; white et al. 2018). henceforth, this section strives to address the identified knowledge gap by operationalising participation according to the icf. allocating the key themes from the narrative analysis to the icf participation chapters (p5–p9) supports the hypothesis that persons with disabilities are restricted in all areas of their life (rohwerder 2020; tora et al. 2018; un committee on the rights of persons with disabilities [un crpd committee] 2016; united nations department of economic and social affairs [undesa] 2016). nevertheless, not all areas are similarly affected. restrictions related to community, social and civic life (p9) and interpersonal interactions and relationships (p7) were most frequently recorded, followed by major life areas (p8), self-care (p5) and domestic life (p6). disaggregating the data to the second level throws light on the distribution within each chapter and enables us to derive patterns regarding the relationship between the type of impairment and participation restriction. restrictions related to self-care were dominated by limitations in looking after one’s health. several studies indicate a relationship between felt stigma and internalised stigma with non-adherence of medication or treatment because of persons with disabilities’ fear that taking medication would make their impairments visible and result in social exclusion. this association was validated for different types of impairments, for example, mental disorders and podoconiosis (amoah 2016; stangl et al. 2019; surur et al. 2017; tesfaw, kibru & ayano 2020; tora et al. 2018; van brakel 2006), indicating that internalised stigma seems to be a characteristic of different types of impairments. for domestic life, acquiring a place to live and acquisition of goods and services were particularly visible in the literature and associated with three arguments: the perception of persons with disabilities as not capable of living independently; lacking financial resources; and no permission by the family to live independently (abah 2017; amoah 2016; arulanantham 2014; stangl et al. 2019; tesfaw et al. 2020; tirfessa et al. 2019; virendrakumar et al. 2018). the counts associated with interpersonal interaction and relationships (p7) are more distributed across the literature, but predominantly attributed to informal social and intimate relationships. social stigma was often linked to misconceptions about persons with disabilities and their capacity to marry (amoah 2016; habtamu et al. 2015; rohwerder 2019a, 2019b; tora et al. 2018; van brakel 2006), resulting in fewer opportunities to marry, particularly for women because of being perceived as asexual or not capable of being mothers (rohwerder 2020). moreover, the literature highlights that stigma affects lived experiences in communities and within work places and healthcare, indicating that in addition to the social level of stigma, there is also a lack of institutional and legal support to enable inclusive participation. acquiring, keeping and terminating a job and remunerative employment were cited most frequently within major life areas (p8). experiencing employment restrictions were found to result from misconceptions about persons with disabilities’ nature and ability. while compromised abilities were attributed to persons with disabilities independent of the type of impairment (abah 2017; habtamu et al. 2018; mfaofo-m’carthy & grishow 2017; mostert 2016; rohwerder 2019a, 2019b), persons with mental disabilities experienced additional barriers to employment because of employers’ perception of them as ‘dangerous’, ‘lunatic’ or ‘unpredictable’ (spittel et al. 2019; stangl et al. 2019; surur et al. 2017). moreover, the literature reflects on employers’ fear that employing persons with disabilities would negatively affect their business (abah 2017). the literature reviewed strongly suggested that women with disabilities experience more challenges in receiving a job or being accepted as job candidates (rohwerder 2020), which is commonly referred to as double discrimination because of intersectionality arising from gender and disability (van der heijden 2019; van der heijden, abrahams & harries 2019a; van der heijden, harries & abrahams 2019b). the last chapter, community, social and civic life (p9), received more counts, distributed among participation levels than the other chapters. community life, human rights, and political life and citizenship were most frequently reported. according to the literature, persons with disabilities’ participation in community life is characterised by social exclusion because of social stigma or self-isolation resulting from low self-esteem as a consequence of internalised disability stigma. human rights violations against persons with disabilities are a result of different factors, including their lacking protection within the legal system, (mfaofo-m’carthy & grishow 2017; mostert 2016; stangl et al. 2019; the advocates for human rights 2016; un crpd committee 2016), their fragility and vulnerability as a consequence of social exclusion, negative attitudes as enforcement of violations against persons with disabilities, misbeliefs about ostensible curing methods and being an ‘easier target’ given functional difficulties (amoah 2016; arulanantham 2014; lord & stein 2013; mostert 2016; rohwerder 2018, 2019a, 2019b, 2020; undesa 2016). furthermore, persons with disabilities are often denied political participation, which limits their opportunities to claim their rights (mfaofo-m’carthy & grishow 2017; mostert 2016; stangl et al. 2019; the advocates for human rights 2016; un crpd committee 2016). insights from the data this section shares further insights into participation restrictions related to community, social and civic life (chapter 9) that emerged through the interviews. furthermore, it introduces a proxy for social stigma to explore its influence on participation in society. participation restrictions related to community, social and civic life during the interviews, five key themes emerged relating to this chapter: persons with disabilities’ willingness to participate, inaccessibility of community meetings, power differentials within community meetings, disrespect of persons with disabilities and the recognition of dpos for empowerment. the survey included two questions examining the extent to which persons with disabilities in the region participated in dpo activities, and levels of participation in decision-making at community level (kebele1 meetings). the interview data suggested that there is a strong willingness on behalf of persons with disabilities to participate in community meetings, social and civic life. however, opportunities to participate are restricted by specific disability-related access factors that posed a tension between willingness and realistic opportunity to participate. irrespective of the type and severity of the impairment, seven types of barriers were reported: rurality and/or infrastructure; physical and/or architecture; legal and/or institutional; attitudinal and/or cultural; information and/or communication; socio-economic and/or material; and temporal. according to one participant: ‘there is a problem with accessibility […] advertisements are not written in braille; the clock rolls; the locations are uncomfortable; uncomfortable places, the inconvenience of transporting from the venue to the venue, the distance from the country.’ (p08¶) for those who had an opportunity to participate, many shared that their voices were not heard or taken seriously. four participants felt that they were either not listened to or silenced (p04, p05, p14*, p15*). a woman from wereta stated that, ‘no, i don’t think i was involved, because when you sit down with others and your voice is not heard, there is a tendency to despair’ (p04). feelings of invisibility were experienced by participants with differences in functioning, status, education and geographic location, but disproportionately by women (four women; one man). the way women with disabilities narrated their experience and their account of feelings of inferiority and invisibility suggests that gender norms intersected with disability norms. except for two men from debre tabor (p01 and p06), all participants felt that their views were not taken into account. they frequently reported that their questions or comments received no (or undue) consideration. participants pointed to the vicious cycle between underlying social norms, unequal participation and feelings of powerlessness: ‘it [actions to making oneself heard by the community or government] has no effect but speaking. the problem is not being accepted. we get frustrated and bored because of the lack of response. […] what we say is almost irrelevant.’ (p04) according to the interview participants, this arises because of underlying embedded social beliefs about disability. disability-related stigma that other persons with disabilities as ‘inferior, weak, and non-human creatures’ functioned as root cause of exclusion for our participants. as detailed by a woman, ‘in traditional mindset[s,] people think to close we [meaning us] blinded ones inside a house and [we are] not allowed to participate in public arenas’ (p05). likewise, a man from the same district explained that ‘society doesn’t include you because it says that some people don’t have the means to go out’ (p08¶). participant 14* clearly expressed the community’s reservation against persons with disabilities’ participation ‘they don’t give us more information, so they don’t want us to participate there’ and participant 13* emphasised how her ‘hidden’ position in society constrained her participation ‘i have no recognition of any union and don’t have involved […] because i have spent my time by sit down at home.’ another woman said that ‘a person with a disability cannot be considered doing anything in this district. we can’t go out in public with a disability; the people can’t see us’ (p03). disabled persons’ organisations were identified as a necessary bridge to overcome power differentials in kebele meetings, ‘the disability association is to achieve that we will have an influence when we are together and we will overcome problems’ (p11). participant 08§ further reasoned that dpos would enable persons with disabilities to be ‘organized and have a community to make a difference, so we are organized and getting a change’ and participant 04 stated that ‘it’s a better way to go in union than one vote.’ as a result of patterns of exclusion, persons with disabilities emphasised dpos as instrumental to accentuate their visibility and voice within the community: ‘[w]e are not able to reach the condition [willingness of other community members to be represented by persons with disabilities] without the activation of those organizations [dpos] in rural and urban areas.’ (p05) yet, this study’s survey indicated that only 30% of participants are actively involved with local dpos. further interrogation of the survey data and follow-up interviews is recommended to explore the reasons why participation in dpo activity is so low among the participant communities. assumed causes of disability following the widely accepted suggestion in the literature that disability stigma is particularly driven by misconceptions about the causes of disability, the following section explores how adults with disabilities understand the causes of disability. this provides insight into the ways in which disability stigma can be internalised by persons with disabilities and is likely to influence their self-esteem, value and self-worth. within the survey, adults with disabilities (n = 970) were asked to respond to the question: what do you think are the main causes of disability? responses (response rate = 100%) were then classified into the following umbrella terms: evil spirit; curse of god; artificial and natural accidents; congenital and/or hereditary and/or natural forces; various diseases; lack of prenatal care; personal and environmental hygiene problem; psychological problems; i don’t know; other; multiple factors, such as evil spirit, disease etc. the study results suggest a knowledge gap about the causes of disability: 51% of the participants reported artificial and natural accidents, 18% mentioned multiple factors, 12% stated to be unaware and 8% believed in supernatural forces. rights awareness among adults with disabilities in exploring opportunities to claim rights, the survey sought to understand whether adults with disabilities felt aware and/or knowledgeable about their rights as persons with disabilities. of the survey participants, 969 persons responded to the question ‘do you know about your rights as a person with a disability?’ on a three-point scale (yes, partially and no). the results suggest that rights awareness is limited among the survey participants, with 52% indicating knowing about their rights, 23% reporting not knowing about their rights, and 25% reporting having only partial knowledge. disaggregating the survey data on disability rights mirrored the patterns found for the survey data on assumed causes of disability. discussion while the literature generally supports the link between disability stigma and participation (rohwerder 2019a, 2019b), a knowledge gap remains in understanding how these two experiences are linked. the present study’s findings suggest that embedded forms of disability stigma directly influence participation in at least three ways. firstly, they can result in the full exclusion of persons with disabilities because of the inaccessibility of spaces and information. secondly, when persons with disabilities engage in community meetings, they perceive that their contributions are belittled, not taken seriously, and thus they are prevented from participating in a meaningful way. thirdly, and relatedly, the influence of disability stigma on efforts to participate can result in different kinds of epistemic injustice that arbitrarily reduce the influence our participants can have in the social practice of meaning making, with disability stigma undermining the status of persons with disabilities in their capacities as knowers. disability stigma as full exclusion from social participation utilising the icf framework to systematically untangle indications of disability stigma within the literature, the study findings help to explain how disability stigma limits participation opportunities at two levels: the personal and environmental. when information on meetings is shared in an inaccessible manner, or when community meetings are hosted in inaccessible places, persons with disabilities are fully excluded and unable to represent their own interests in such spaces (table 4 and table 5). the findings indicate that the labour of dpos is critically important in connecting persons with disabilities with accessible information on community events, and in supporting and encouraging participation. all of the interview participants were active members of dpos, but only 30% of survey participants were engaged in these collective disability-centred supports. this suggests that extending local dpo networks may be an important dimension of increasing participation in community meetings through raising awareness of opportunities to participate, and also providing tangible support to enable access. however, the study findings further suggest that raising awareness and providing support to facilitate access to meetings are not sufficient to address embedded socio-cultural norms and beliefs that prevent meaningful forms of participation. disability stigma as restricted participation: the prevalence of testimonial injustice our findings from the literature and survey data point to specific forms of stigma that are unique to persons with disabilities and that influence social power dynamics during the process of participation. firstly, our findings point to the persistence of social misconceptions around disability that ground disability stigma. in the literature, attitude (e4) was most frequently reported as an environmental barrier that was found to be driven by misconceptions about the causes of disability and a lack of awareness of what disability means. the interview data further helped us to reveal how those underlying stigmatising norms translate into lived experiences. in-depth interviews with persons with disabilities about their experiences of participatory processes in the community pointed to ways in which disability stigma limits opportunities to meaningfully participate and therein manifests a case of testimonial injustice (fricker 2007:1). in unfolding how interview participants perceived the dynamics between persons with disabilities as speaker and persons without disabilities as hearers during kebele meetings, the present study revealed examples of inferiority, disrespect and power imbalance: feelings of ‘not being listened to, not being heard, inferior, being silenced’. as speakers, persons with disabilities felt that hearers attributed less credibility to them than to their peers without disabilities. central to their experience was the perception that being recognised as less credible was linked to their identity as a person with disability. taking together with the results from the literature review and the survey data, the findings of this study support evidence of a ‘collective conception’ (fricker 2007:15) grounded in the stigmatisation of persons with disabilities as unable to act as an authority with the necessary capacity to lead and contribute in a meaningful way. this study does not provide insight into the perceptions of persons without disabilities, rather it focused on how persons with disabilities narrated their experience of participation. the restrictions they experienced help us to understand how collective imagery of differences in power can result in unequal and unfair power relations and dynamics. in other words, the stigmatising norm acts as – what fricker calls – ‘the prejudice that causes’ (fricker 2007:1) a credibility deficit (fricker 2007:17). while a deficit in credibility on its own does not necessarily result in a negative outcome for the subject, here, the cultural and social framing of persons with disabilities as less credible knowers manifest wide-ranging harm done to this group. secondly, the interview data […] findings also point to another aspect of testimonial injustice, an intersectional dimension. while feelings of neglect, disrespect and invisibility were shared by men and women with disabilities, women with disabilities appeared to be disproportionately affected. this aligns with fricker’s (2007) framing of testimonial injustice within identity politics and points to the difficulties of single-axis and siloed approaches. from our insight into how disability stigma and gender norms interact, we suggest that inclusion-oriented policies must recognise persons in their full diversity. for the case of cbid, this requires contextual insight into the underlying gender norms and criteria that determine and legitimise one’s capacity as a knower as well as the drivers of those norms. this is necessary to address discriminatory norms and provide real equal opportunities for meaningful participation. disability stigma as a driver of structural hermeneutical injustice the distinct nature of disability stigma is premised on an assumption of differential power and knowledge between persons with and without disabilities. the survey found that almost 20% of persons with disabilities did not understand the causes of their disability or believed that it is because of supernatural forces. moreover, only half of the participants recognised their basic human rights. through the icf coding of the literature, it was found that participation restrictions were reported across all areas of life, providing evidence of the non-inclusivity of systems in society. in interviews, participants further pointed to the inaccessibility of meetings. persons with disabilities expressed their concern about the absence of disability-inclusive communication and information, which would limit their opportunities to participate in society. although it could be argued that those experiences are singular stories or accidental, this is countered by the scale and scope of our icf analysis and survey data, which points to the systemic nature of disability stigma and exclusion. the survey data point to evidence that persons with disabilities are affected in their capacity as knowers with many internalising harmful beliefs and accepting a marginalised social position. such marginalisation embeds acceptance of exclusion from processes of meaning-making and making sense of one’s experiences. as such, the authors suggest that disability stigma is not a case of accidental but structural hermeneutical injustice. taken together, the findings of this study suggest that negative norms in society translate into unequal knowledge and power systems that disproportionately affect persons with disabilities in their capacity as knowers. it is this epistemic difference that permits the structural injustice to occur. conclusion this study demonstrated that enabling the active participation of persons with disabilities in society remains a challenge for cbid, but active engagement with dpos can be transformative for persons with disabilities in terms of social participation and knowledge and understanding of basic rights and entitlements. as showcased through the application of relevant icf domains, there are many ways in which the participation of adults with disabilities in society is affected. however, restrictions regarding communal and interpersonal interactions appear to dominate. the fundamental point emerging from the reviewed literature is that stigma is a key hindrance to the participation of persons with disabilities in society, which is driven by underlying social norms and unequal power dynamics. in alignment, the analysis of primary data showed that misconceptions about the causes of disability persist and that underlying social norms related to gender and social identity also matter. this study’s findings point to evidence of testimonial and structural hermeneutical injustice, but there is another dimension relevant to the case of disability. in both the literature and the survey results, it was found that processes of internalising stigma influence persons with disabilities in their capacity as knowers. through developing key themes and subgroups of personal barriers, this article has shown that within literature, psychological processes of meaning-making were most frequently reported as personal barriers to participation, whereby internalised stigma and low self-esteem emerged as key concepts, directly linking the environment with the personal domain. this linkage received most attention for the last participation chapter community, social and civic life (p9), with a number of records reporting on self-isolating behaviour resulting from low self-esteem as a consequence of internalised disability stigma. this points to an additional dimension of epistemic injustice – what might be called ‘internalised injustice’ whereby harmful social norms and values are internalised by a person with disability and this can result in self-limiting behaviour. this comes before hermeneutical injustice. further research is required on the extent to which internalising stigma results in self-limiting behaviour and whether this points to an additional dimension of epistemic injustice. however, this study’s survey findings point to initial evidence of how internalised stigma can result in self-limiting behaviour in three ways – the uncritical acceptance of misconceptions about disability by persons with disabilities themselves; limited awareness of one’s rights; and low membership in dpos as institutions established by and for persons with disabilities. furthermore, some of the interview participants described how harmful collective imaginaries are internalised and lead to frustration and/or dissociation from one’s agency. further interrogation of the survey data to explore the dynamics of internalised stigma and how this generates epistemic exclusion as a form of internalised injustice is required. acknowledgements the authors would like to acknowledge louise talbot beirne who provided valuable feedback and support, which informed the development of this article. sarah o‘toole provided valuable feedback and support, which contributed to finalising this article. competing interests the authors reported that they have received funding from cbm ireland to conduct this research, and bt is employed by cbm international, a non-government organisation that may be affected by the research reported in the enclosed publication. they have disclosed those interests fully and have in place an approved plan for managing any potential conflicts arising from that involvement. authors’ contributions e.b., c.j. and s.p.m. were responsible for the conceptualisation of the study. s.p.m., e.b. and c.j. contributed towards the methodology. e.b. conducted the formal analysis, investigation, data curation, and writing of the original draft c.j., s.p.m. and b.b.t. were responsible for the review and editing of the article. s.p.m. and c.j. did the supervision, e.b. and b.b.t. were responsible for the project administration, c.j. performed the funding acquisition. all authors have read and approved the final version of the manuscript to be published. funding information this work was financially supported by cbm ireland. data availability the 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interchangeably, describing meetings that are open to all community members, who live in the respective kebele. abstract introduction research methods and design results and discussion conclusion acknowledgements references about the author(s) sadna balton department of speech therapy and audiology, chris hani baragwanath academic hospital, soweto, south africa mershen pillay department of speech, language pathology, faculty of health sciences, university of kwazulu-natal, westville, south africa department of speech, language therapy, institute of education, massey university, auckland, new zealand rizqa armien department of occupational therapy, symphony way community day centre, cape town, south africa annika l. vallabhjee department of speech therapy and audiology, chris hani baragwanath academic hospital, soweto, south africa elani muller effective care research unit, east london, south africa mark j. heywood nelson mandela school of public governance, university of cape town, cape town, south africa jeannie van der linde department of speech-language pathology and audiology, faculty of health sciences, university of pretoria, pretoria, south africa citation balton, s., pillay, m., armien, r., vallabhjee, a.l., muller, e., heywood, m.j. et al., 2024, ‘lived experiences of south african rehabilitation practitioners during coronavirus disease 2019’, african journal of disability 13(0), a1229. https://doi.org/10.4102/ajod.v13i0.1229 original research lived experiences of south african rehabilitation practitioners during coronavirus disease 2019 sadna balton, mershen pillay, rizqa armien, annika l. vallabhjee, elani muller, mark j. heywood, jeannie van der linde received: 13 apr. 2023; accepted: 06 nov. 2023; published: 12 jan. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in south africa, the sharp rise in people with severe illness because of coronavirus disease 2019 (covid-19) in early 2020, meant that health systems needed to adapt services and operations, including rehabilitation services. important insights into the lived experiences of rehabilitation personnel enacting these adaptations in an african context are limited. objectives: the aim of this study was to explore the lived experiences of rehabilitation practitioners working in the public sector in south africa during the covid-19 pandemic. method: a phenomenological approach and a duo-ethnographic design were used. a recruitment letter was circulated requesting volunteers. maximum variation sampling was used to select the 12 participants of this study. data were collected through interviews via zoom, and critical conversations were facilitated by a non-rehabilitation partner who is known for challenging health inequities. the interviews were audio-recorded and transcribed verbatim. data were analysed through elements of qualitative content and thematic analysis. data were coded, categorised, clustered into concepts and formulated into themes. results: three themes were identified: (1) ‘management became the enemy’, (2) ‘tired of being resilient’ and (3) ‘think out of the box…think on our feet’. conclusion: the results of this study highlighted new ways of practice, innovative adaptations, and usage of resources and platforms. contribution: this study highlights the re-imagining of accessible rehabilitation services that could lead to deeper onto-epistemological shifts amongst the rehabilitation practitioners. keywords: covid-19; lived experiences; rehabilitation practitioners; mental health; innovation; leadership south africa. introduction in december 2019, people presented to healthcare facilities in wuhan, china, with severe pneumonia of unknown aetiology (lew, oh-park & cifu 2020). as the influx of patients continued and investigations were done, the coronavirus disease 19 (covid-19), which was caused by severe acute respiratory syndrome coronavirus 2 (sars-cov-2), was identified (de biase et al. 2020; lew et al. 2020). globally, the number of cases and deaths was climbing steeply because of covid-19 (ngeh et al. 2020). the president of south africa announced a nationwide lockdown; social distancing principles and mask-wearing became mandatory (nkonki & fonn 2020). the sharp rise in severely ill patients meant that health systems across the world needed to adapt services and normal operations to cater for the emerging health needs of communities (de biase et al. 2020). this led to many challenges that healthcare workers had to face in healthcare institutions. challenges included a shortage of beds, ventilators, human resources, and the limited availability of personal protective equipment (ppe) and other medical equipment (hill et al. 2020; lew et al. 2020). certain health, rehabilitation and social services came to a halt as resources had to be redistributed to assist with the treatment of covid-19 patients (lew et al. 2020). because of a lack of close collaboration between sectors at all the different levels of management, the identification and agreement on what is deemed priority essential services, resulted in a breakdown in the continuity of care (modisenyane et al. 2021). many rehabilitation practitioners were required to function outside their scope of practice to assist with the burden of the pandemic; this included assisting with the screening and triaging of patients for covid-19 (adams et al. 2021). rehabilitation practitioners also had to work in dedicated covid-19 units, where they had to act quickly with limited protocols and guidelines available to inform the acute and lifesaving medical care provided to covid-19 patients (amatya & khan 2020b; de biase et al. 2020; lew et al. 2020). in some covid-19 units, physiotherapists were responsible for providing interventions targeting cardio-respiratory, pain and musculoskeletal dysfunction, while speech therapists were providing dysphagia-related interventions (adams et al. 2021; hassem et al. 2022). occupational therapists offered mental health services to patients, as the demand for mental health care escalated because of pandemic-induced stress and anxiety around the pandemic (firshman, hoffman & rapolthy-beck 2020). at a later stage, research and guiding documents from professional bodies or associations assisted with planning and refining service delivery during the pandemic (malec et al. 2020; ngeh et al. 2020; sheehy 2020). the emerging needs of patients with and affected by covid-19 were multifold: patients with severe illness, in need of ventilation for prolonged periods of time experienced cognitive impairment at the time of discharge with functional deficits for up to one year (lew et al. 2020). increasing concerns such as major depressive disorder, anxiety and post-traumatic stress disorder (ptsd) were also noted among some patients directly affected by the disease (de biase et al. 2020; lew et al. 2020; lund et al. 2020). furthermore, a significant number of patients had word-finding difficulties, voice changes and difficulties with swallowing (royal college for speech, language therapy [rcslt] 2022). the cessation of rehabilitation services caused further disease leading to increased impairment, poverty, social exclusion and poorer functional outcomes (lund et al. 2020; ngeh et al. 2020). this correlation is unsurprising, given the well-established bidirectional relationship between disability and poverty (pinilla-roncancio 2015). decreased access to healthcare services globally (world health organization [who] 2021) led to rehabilitation practitioners finding innovative ways to provide therapy to their patients despite the covid-19 restrictions. telerehabilitation was identified as an existing method that could bridge the gap between patients and their access to rehabilitation services (doraiswamy et al. 2020; pillay et al. 2020). despite the benefit of telerehabilitation during the covid-19 pandemic, challenges included limited access to technology, high cost of data and a lack of implementation guidelines on telepractice in public health care; this influenced the effectiveness of these novel approaches (leochico, rey-matias & rey-matias et al. 2022; pillay et al. 2020). while some countries have described their health system changes and ways of providing rehabilitative services to their patients, important insights into how rehabilitation personnel executed these changes in an african context remain limited (ngeh et al. 2020). a number of studies have been conducted since the outbreak of the covid-19 pandemic, the majority of which explored the impact of the virus on, but not limited to, service delivery (landes et al. 2020; lebrasseur et al. 2021; patterson et al. 2020), the manifestation of the virus itself (ahmed et al. 2020; kamal et al. 2021; who 2020), and its impact on the mental health of health care workers (cag et al. 2021; fiejit et al. 2020; robertson et al. 2020; temsah et al. 2020). jow et al. (2022) conducted a cross-sectional study looking at the mental health of physiotherapists, speech therapists and occupational therapists, and found a high impact of covid-19 on the occupational stress and psychological well-being of the participants. a global survey conducted by cag et al. (2021) found that anxiety scores significantly increased in relation to younger female health workers (ned et al. 2020; pillay et al. 2020), which constitute most rehabilitation professionals in south africa. literature review showed a focus on the lived experiences and viewpoints of nurses (fathi et al. 2020; liu et al. 2020; iheduru-anderson 2020; karimi et al. 2020; roberts, knestrick & resick 2021), doctors (fathi 2020; liu et al. 2020; yarrow & pagan 2020) and patients (aliyu et al. 2021; portocolone 2021). yet, limited research describes the lived experiences of rehabilitation practitioners. understanding their lived experiences could improve our understanding of what it means to provide rehabilitation services under these conditions (dierckx de casterle et al. 2011). this requires critical reflexivity which accounts for the interconnectedness between the personal, interpersonal, methodological and contextual factors for both the participants and researchers (francisco et al. 2023; gilgun & jane 2008). this reflexivity is contextualised within the spirit of ubuntu which asserts that ‘to be a human being is to affirm one’s humanity by recognising the humanity of others’ (ramose 2002:37). the aim of the study was to explore the lived experiences of rehabilitation practitioners working in the public sector in south africa during the covid-19 pandemic. research methods and design a phenomenological approach using critical conversations rendered an opportunity for capturing the lived experience of participants (frechette et al. 2020). phenomenological research ‘is a return to embodied, experiential meaning, to seek fresh, complex, vivid descriptions of a “phenomenon” (a human experience in all its complexity) as it is concretely lived’ (finlay 2009). these lived experiences bring together the stories of people to enrich the understanding and scope of the phenomenon (honey et al. 2020). diverse manifestations across african, asian, latin american, caribbean and other contexts emphasise oral history. the concept of ‘the story’ has now evolved into a recognised ‘narrative turn’ in research, a development that has been both welcomed and critiqued within disciplines such as medicine, nursing, rehabilitation and many other health science disciplines (giraldo-pedroza et al. 2021; kathard et al. 2004), potentially because of its divergence from quantitative research. our study design was supported by the mapping of personal experiences using a method developed from a study on communication sciences called ‘critical conversations’ (pillay 2003). the goal of a critical conversation is to overtly foreground issues of social, cultural and political gravitas when producing and interpreting data. critical conversations harmonise with this narrative-biographical design as it relies on dialogue to represent experience to reconceptualise and regenerate the meaning. these are also essentially reflexive processes that apply to critical conversations and shift across technical/descriptive, interpretive approaches (sveningsson & karreman 2021). this study investigated the experiences of physiotherapists, occupational therapists, speech and language therapists, and audiologists in the public sector across south africa. these practitioners’ work in diverse settings across the provinces and between urban or rural contexts. these contextual variations have resulted in disparities in resources such as human, financial and physical. these resource inequities have historical roots tied to the allocation of resources for different racial groups in south africa. this legacy, in accordance with separate development and its political overflow into healthcare, resulted in unequal healthcare services for people of colour, often provided by under-resourced health care facilities (de villiers 2021). in contrast, relatively well-resourced facilities were geared towards serving the minority of white people in south africa, echoing historical biases. sampling method maximum variation sampling (given 2008) was used to select a wide diverse study sample. in this study, participants were purposefully and maximally different from each other by race, experience, job title (e.g. manager, clinical practitioner) and location or site (e.g. province). race and gender were considered because these are significant social and political identities that interact with professional practices (abrahams et al. 2019). ethical considerations prior to recruitment, a human research ethics committee clearance was obtained from the review board of the university of cape town (ref:569/2021). a recruitment letter was circulated to the national public sector rehabilitation forum to all occupational therapists, speech-language therapists, physiotherapists and audiologists, describing the study and asking volunteers to contact the principal investigator. eligibility was determined by the research team, consent was obtained, and participants were enrolled in the study. inclusion criteria the inclusion criteria for rehabilitation practitioners were those: (1) whose primary practice site is in the public sector in clinical and/or managerial (service) positions; (2) who have practised with/for covid-19 patients; and (3) who self-declared their willingness and ability to participate in a critical conversation. study population and sampling strategy the study sample included 12 participants with 4 being in management positions. the professional breakdown included four occupational therapists, three physiotherapists, three speech-language therapists and two audiologists. of these, three were male and nine were female. four participants were from gauteng, three from mpumalanga, two from the western cape, two from kwa-zulu natal, and one from north west province. three rehabilitation practitioners had 5 and less years of experience, two had between 6 and 10 years and four had between 16 and 20 years of experience. data collection twelve individual critical conversations were conducted which took an average of an hour each. at the time of each critical conversation, participants received both oral and written information about the study, including their right to withdraw their participation at any point without consequences. written informed consent was obtained from all the participants. the conversations were conducted via zoom by an individual who was not a member of the rehabilitation professions, and who is a natural disruptor, which is required to facilitate critical conversations and to develop an emic-etic balance in the methodological processes typical of critical conversations (lambert, glacken & mccarron 2011; macnamara 2021; olive 2014). emic and etic perspectives are important in ethnographic research so that it captures the interaction between the interviewer and participants to explore multiple perspectives (macnamara 2021; olive 2014). twelve participants were asked to share their experiences, based on their unique perspectives and, as these were critical conversations, specific, structured questions were not predetermined. the questions differed based on the information obtained during each conversation which ranged from 50 to 60 min. a short introduction was provided by the lead conversation partner to situate the study and to position their role as a health activist and journalist who was not trained in any of the rehabilitation professions. at the end of the conversation, participants were provided the opportunity to correct misunderstandings or add additional information. conversations were audio-recorded using zoom online meeting software, and transcribed verbatim using otter.ai, a speech-to-text transcription software that uses artificial intelligence (ai). zoom allows for the safe protection of data for research because of its ability to securely record and store sessions for the purpose of collaboration (archibald et al. 2019). transcriptions were then rechecked for syntactic and content accuracy by the researchers shortly after each critical conversation. interviewee transcript review (hagens, dobrow & chafe et al. 2009) was utilised where participants were provided with their verbatim transcripts to verify for accuracy and correct any errors. the audio recordings were stored in a password-protected file on the lead researchers’ computer and managed in accordance with university of cape town’s data management policy. each participant’s audio-recording and transcript were de-identified and labelled with a code (numerical) to maintain confidentiality, and only the primary investigator had knowledge of the participants’ code. data analysis data were analysed after all critical conversations were completed, and a thematic analysis was conducted using steps described by braun and clark (2019). all data obtained were initially read to provide a holistic view of the reported lived experience. data were coded (substantive and axial coding) resulting in an extensive list of codes; the codes were categorised, clustered into concepts, and finally formulated into three themes. researchers then subsequently discussed, critiqued, collaborated and concluded on any divergent opinions concerning the categorisation and themes. this reflection allowed the researchers to evaluate their subjectivity, belief systems and underlying biases which contributed to the overall trustworthiness of the study (delve & limpaecher 2022; olmos-vega et al. 2023). results and discussion exploring the lived experiences of rehabilitation practitioners allowed for data to be generated from the field towards specific themes or theoretical perspectives of rehabilitation practice in south africa during the covid-19 pandemic. three themes were identified through the content and thematic analysis: (1) ‘management became the enemy’, (2) ‘tired of being resilient’, and (3) ‘think out of the box…think on our feet’. ‘management became the enemy’ the fragility of healthcare systems and its leadership was exposed by the covid-19 pandemic, which included the lack of leadership, limited guidance and poor communication from top management. while there is no playbook for leadership in a pandemic, positive and collective leadership that is ‘authentic, aware, adaptive, flexible, as well as trusted, engaged and compassionate’ is crucial (anjara et al. 2021; hill et al. 2020). collective leadership is displayed by joint participation in decision-making by all team members who complete tasks that were reserved for a hierarchical leader (anjara et al. 2021; edwards & bolden 2023). in this study, top management’s response was described as a ‘fragmented, reactive response to covid-19’. the anger of rehabilitation practitioners is exemplified in the responses of participants 5 and 6: ‘they haven’t experienced it. it’s nice for people, for people to sit in the offices and tell us what to do. but if you are not working alongside me, and you’re not seeing what i’m seeing, you can’t tell me in terms of how to do things better.’ (p5, male, physiotherapist) and so, management also became the enemy if i can call it that, at some point. “you guys are making the decision for us. you’re not considering our point of view. you’re not going and working in the actual wards; you are not in the frontline. you’re sitting behind your desk and your computers in the office in the safest space.’ ‘but some of them just still wanted to be i’m the manager, i’m the boss, you just need to do x, y, and z.’ (p6, male, audiologist) mather (2020) states that leaders need to act with urgency, take responsibility by responding to mistakes, adapt and constantly update, communicate with clarity and transparency, and think outside silos. managers who were interviewed highlighted these behaviours as they reported that they led their teams with the sense of urgency that was required. they achieved this by initiating collaboration with other health care workers in the wards and by developing systems within their departments to address workload and well-being challenges. transparency and communication were the key strategies utilised by managers. other strategies included daily meetings to touch base and share any new information received, developing protocols, establishing clear and accessible communication channels, and responding from a point of ‘humanity’. this example of leadership exemplifies some of the characteristics as described by mather (2020) earlier: ‘i think one of the things of being a manager, you don’t have that option to run away. so, i felt like, i have to experience it, so i know how it feels so when i give it to somebody else, i will tell them this is what to expect, this is how it feels like, be aware of certain things.’ (p12, female, manager) one of the managers stated that there was a lot of resentment directed towards them; however, they did not receive much guidance from their hospital management or province as validated by a provincial manager in the quotation below: ‘we did not provide sufficient support and sufficient guidance in terms of what needed to happen during that phase to ensure that people are supposed to do the same thing across the province.’ (p1, male, manager) the lack of collective leadership and barriers to service delivery led to ‘inverted decision-making’ by rehabilitation practitioners; that is, the traditional hierarchical approach to decision-making was flipped. collective leadership refers to an approach that allows us to understand power relations within the rehabilitation context, as discussed below by a variety of practitioners such as clinical leaders or their managers towards transforming healthcare services in the future. frontline rehabilitation practitioners initiated collaborative team decision-making to find solutions to service delivery challenges, thereby deviating from ‘the traditional command and control’ leadership style (anjara et al. 2021:2). work model rotations, the practice of alternating schedules, shifts and working hours, were instituted within some rehabilitation teams, and were later adopted by management using a consultative decision-making model. this response was used so that rehabilitation practitioners could ensure that service delivery continued, despite changing and uncertain circumstances. ‘risk rating with a heart’ was implemented to safeguard team members with comorbidities. this implies that a decision-making process was used that not only considered objective risk assessments but also considered the well-being and needs of the individual involved. this model was unfortunately not carried over at all levels of service delivery, highlighting the siloed response in leadership. rehabilitation practitioners felt pressured to continue providing services to all citizens at all levels of healthcare as the struggling healthcare system was crippled further by the covid-19 pandemic (mckinney, mckinney & swartz 2021; uys et al. 2021). while there was an international call for rehabilitation to be included in disaster management planning (amatya & khan 2020b), rehabilitation practitioners across disciplines in this study reported that rehabilitation services were ‘at the bottom of the food chain’. the statements in figure 1 highlight the emotions and frustrations felt because of rehabilitation outpatient services being stopped, and inpatients being prematurely discharged because of covid-19. figure 1: participant’s responses on rehabilitation services being stopped. while the directive was to stop services, there was a commitment to finding alternate ways of reaching patients (ilyas et al. 2021). participants also expressed their concern about the socioeconomic impact of this exclusion and its disproportionate effects on people with disabilities living in poverty (banks et al. 2021). this concern was highlighted by participant 10: ‘“you know, people with disabilities have high levels of comorbidities, higher levels of poverty, higher levels of risk of developing secondary complications”… “so, we started fundraising for food parcels. we worked with a local faith-based organisation. just a few food parcels, and then we distributed them”.’ (p10, female, physiotherapist) many participants commented that they experienced an identity crisis related to their role within the healthcare system during covid-19. there was a general sense of underappreciation of the role of rehabilitation as part of the health care systems response to covid-19. participants expressed that their voices were not heard and that they were often not consulted when decisions were made: ‘i think we had a little bit of an identity crisis in terms of being essential, where do we fit in this crisis? you know, we don’t deal with these life and death things.’ (p2, female, occupational therapist) ‘…very often we are not even afforded that platform to say for you, what do you think will happen to ensure that the people that you serve still receive the service, so very often that doesn’t come through, so we are often forgotten in this thing.’ (p1, male, manager) participants further highlighted a sense of being forgotten, when they shared examples of their difficulty trying to access ppe. participant 8 expressed their disappointment when describing their experience during the first wave: ‘we would come to work in the morning, and you have to sign a register to get a mask. and that mask has to be used until physically, it was spoiled, or you couldn’t use it again.’ (p8) a study conducted at a tertiary hospital in south africa also found that health care workers reported psychological distress related to the perceived barriers to infection control practices (lee et al. 2022). this feeling of being undervalued and underappreciated had a negative impact on the well-being of many rehabilitation practitioners. ‘tired of being resilient’ rehabilitation practitioners, like all other health workers, were expected to ‘step up, be brave, and provide care and comfort’ (iheduru-anderson 2020) to those affected by covid-19 while faced with the challenge of managing their personal/human response to the pandemic. participants in this study stated that the critical conversations provided a debriefing session for them. participant 2 summarised the sentiment of most participants when stating that: ‘i was just excited about this interview in general, because i just feel like it’s a platform to be heard by people who understand and who would understand rehabs perspective and rehabs background, and not just look at it in terms of you a health care worker and that’s really bad.’ (p2, female, manager) like chersich et al. (2020) and dawood, tomita and ramlall (2022), we also noted participants reporting difficulties coping with stress, anxiety and the psycho-emotional impact that the pandemic has had on them. in figure 2, participants’ expressed responses across the spectrum of emotions referencing paranoia, feelings of anxiety, anger, frustration, exhaustion, stress, and burnout. some mentioned developing a blunted affect alongside covid fatigue, expressing that they were ‘tired of being resilient’ which concur with findings in a study conducted by jow et al. (2022). participants stated that their feeling of anxiety was initially related to the lack of ppe, dealing with the uncertainty of covid-19 on individuals, and its impact on the profession. figure 2: word cloud of human and personal responses on the coronavirus disease 2019 pandemic. rehabilitation practitioners enacted personal or human responses across their professional and home lives, as evidenced by three significant issues: management of work and family responsibilities, protecting families against possible exposure, and having to make the rules about the safety of family members within the home context. rehabilitation practitioners, who are predominantly female, reported the added burden of having to continue with their responsibilities at home in addition to online learning for their children. saragih et al. (2021) found that women healthcare workers faced an increased caregiving burden during the pandemic which impacted their health and well-being. this is highlighted by participant 7: ‘… i understand my commitments, as a wife, a mother, a daughter, whatever are the figures that you’re playing, and how is it that you’re also able to provide for you, like, provide that aspect of what needs to happen, and try and put those together and get that work life balance. … i feel like work-life balance for women is really, really difficult in the public health sector.’ (p7, female, speech therapist and audiologist) the fear of infecting family members at home increased the fear and anxiety experienced by participants at work. one participant mentioned that they avoided any contact with their family after they had contracted covid-19. the lack of understanding at community level further isolated rehabilitation practitioners from visiting family. the added responsibility of keeping families safe and making rules within families to ensure that everyone stayed safe was an additional burden on rehabilitation practitioners. the line between home and work became blurry as covid-19 was not just something being experienced by the patients they treated at work but was something that affected their families. the impact of people’s loss was not limited to work, as many had to deal with loss of family members and return to work and continue to function within a highly stressful and demanding setting. this was expressed by participant 1: ‘it was very stressful, a lot of friends, colleagues, and family members that we buried. i’ve lost two sisters, so it was very sad, but personally i think i’ve just accepted that it’s one of those circumstances and then we just have to accept and move on.’ (p1, male, manager) undoubtedly the pandemic was scary, an event guaranteed to evoke a range of emotions, particularly fear and anxiety as displayed by the participants responses: ‘a lot of uncertainty, a lot of fear. and fear mongering a lot of my family worrying about me.’ (p5, male, physiotherapist) ‘… the area that gives me anxiety is the fact that i haven’t been able to do my core function along with it, because every time there’s an emergency, especially within the covid area, i have to drop my core function and go and run to sort that out.’ (p5, male, physiotherapist) ‘because everybody was afraid, and everybody was so unsure of what was happening. it made life very difficult.’ (p12, female, manager) ‘so that (not being home) also created another level of being anxious and calling and finding out. how are you doing? do you need anything? trying to find a long-lost friend back home, who can go do something quickly, and drop it off for your mother.’ (p12, female, manager) the notion of rehabilitation practitioners not displaying their vulnerability was quickly discarded as many created healing and holding spaces for their colleagues. rehabilitation practitioners shared their own covid-19 stories; the aims for this were multifold. some saw it as a means to break the stigma of being covid-19 positive, especially during the early stages when even health care workers were unsure how to respond. storytelling was used to establish a broader sense of belonging and healing. this ‘unmasking of emotions’ represents a significant shift in how rehabilitation practitioners overtly engage their own humanity in relation to their personal health risks, the loss or death of family and loved ones. practices, mediated by anxiety, fear, self-advocacy and suchlike created a humanising professional development experience and highlighted the spirit of ubuntu. the following responses from participants display how ubuntu was ignited within healthcare settings. rehabilitation practitioners also reached out to one another and offered support; many online platforms and resources were also shared. ‘if i can say it humanity, we got to learn about each other as humans, and what makes us human and what makes us tick and what makes us scared.’ (p12, female, manager) ‘the physio manager would come to me and say: “i am so tired of seeing patients dying. we can’t anymore, we really can’t.” and so in those conversations it would come up, okay tell me how my staff can help you? how can we help you? what can we do to ease the burden on you guys?’ (p3, female, manager) ‘think out of the box … think on our feet’ the importance of putting patients’ rights first (uys et al. 2021) was emphasised by participants and in some places, patients were provided with varied options in terms of service preference and attendance. rehabilitation practitioners had to find new ways of practice. telerehabilitation is an effective method to reduce the financial burden and improve access to healthcare services for patients and their families in low socio-economic settings (who 2021). in this study, rehabilitation practitioners reported that the initial lockdown period provided them with the opportunity to investigate telerehabilitation practices and how it could improve access to healthcare services: ‘… we had to be resourceful; we had to be really innovative.’ (p3) ‘… we all had to think out of the box, we all had to think on our feet.’ (p12, female, manager) the telerehabilitation practices utilised included both synchronous (video calls) and asynchronous (pre-recorded videos and whatsapp groups) methods. rehabilitation practitioners reported that they effectively reached treatment aims through the distribution of pre-recorded videos which assisted patients with activities like dressing and completing exercises within their home environment. pre-recorded videos were also used to train caregivers and family members of patients who were unable to enter health facilities for essential practical training such as wheelchair transfers and home exercises. whatsapp groups were created to maintain communication and support as another asynchronous method of service delivery. the socio-economic status of rehabilitation practitioners determined whether they were able to personally access the technology required. some were able to use their own technology like cellular phones, tablets and their own data to provide telerehabilitation, as resources were unavailable at institutions. rehabilitation practitioners at one site approached cellular network providers for assistance and funding to ensure telerehabilitation services were available for themselves and for their patients. the need for equitable access to resources for telehealth was highlighted by participant 6: ‘… our telehealth was not that advanced one as in you’re going to skype with the patient or zoom the patient, we were mostly checking them telephonically to find out, how are they doing.’ (p6, male, audiologist) to date, there are no published guidelines on telerehabilitation by the national department of health to guide practitioners and managers (govender et al. 2022). the need for these guidelines were expressed by participant 1: ‘we need to develop proper, clear guidelines on how we implement telerehabilitation or telemedicine so that the services we provide are not diluted.’ (p1, male, manager) an epilogue on race in the context of south africa’s history, race and racism have deeply influenced all parts of society, including healthcare and rehabilitation workers. while the discussions with participants didn’t always directly highlight the role of race in rehabilitation, the conversations did emphasise the significance of race-related issues in south africa, such as economic disparities and unequal healthcare services. however, participants’ understanding of their social and professional identities, including factors like race and gender, had an indirect influence on how they saw their role as practitioners. for example, participant 2 mentioned that therapists from different backgrounds might have varying levels of exposure to different environments, impacting their ability to relate to patients’ challenges, like lack of access to healthcare because of financial constraints and transportation issues. interestingly, one participant noted that factors like race, gender and age weren’t as crucial as the amount of clinical experience they had. this viewpoint contrasts with a previous argument by pillay and pillay (2021) that highlighted the role of race and social identities in rehabilitation practice, particularly in cases like dysphagia rehabilitation in south africa. nonetheless, further investigation is needed to fully establish the significance of race and racism as key factors in how practitioners responded during the pandemic. study critique this study presents a cross-professional examination of rehabilitation practices during the pandemic, highlighting the growing relevance beyond traditional healthcare domains such as medical and nursing services. by doing so, it sheds light on the distinct contextual challenges faced by rehabilitation practitioners in south africa. it should be noted that this study provides a comprehensive portrayal of rehabilitation practitioners, predominantly from therapeutic disciplines, while excluding input from stakeholders in fields like psychology, social work and other healthcare professions. this study’s scope does not encompass a specific geographical or socio-economic context. however, it offers valuable insights as a representative voice from the public rehabilitation service sector, which has been the primary resource for many south africans with disabilities during the pandemic. the experiences recounted by south african rehabilitation practitioners in this study could potentially resonate with those of professionals in similar settings across the globe, particularly in low-to-middle-income countries. methodologically, the inclusion of a non-rehabilitation partner, in this case a journalist, for critical discussions is noteworthy. this study provides, via the use of critical conversations, a robust approach to studying the experiences of rehabilitation practitioners. when synthesising the interview data, it was noted that there was potential for uncovering valuable insights into the diverse and challenging landscape of rehabilitation practice in south africa. as a method ‘critical conversation’ may benefit from more explicit review of how, more specifically its techniques and methods may be used to foreground social, economic and political issues associated with rehabilitation practice in south africa. its integration within a phenomenological approach allowed for nuanced revelations on social and cultural influences on rehabilitation practitioners. this innovative approach not only introduces external perspectives but also brings essential critical perspectives to the forefront. moreover, it holds the promise of generating fresh insights into the societal, cultural and political dimensions of rehabilitation practice. conclusion this study explored the lived experiences of rehabilitation practitioners in south africa during the covid-19 pandemic, shedding light on the profound shifts and challenges they encountered. through an in-depth exploration of their narratives, three significant themes emerged: ‘management became the enemy’, ‘tired of being resilient’, and ‘think out of the box … think on our feet’. in summary, the covid-19 pandemic catalysed shifts in leadership dynamics, emotional responses and service delivery practices among rehabilitation practitioners in south africa. the study reveals a multidimensional narrative that encompasses resilience, vulnerability, innovation and the intricacies of social identity. this also affirms the voices of rehabilitation practitioners in a public platform. the findings on rehabilitation professions in south africa hold the potential to significantly enhance future pandemic planning and preparedness. by analysing the experiences, challenges and adaptations of rehabilitation professionals during and after the pandemic, this study can provide valuable insights into the resilience of health care systems, the effectiveness of remote and virtual rehabilitation services, the impact of patient outcomes, and the identification of critical gaps in the healthcare workforce. the findings may serve as a foundational resource for policy makers, healthcare administrators and public health experts, enabling them to devise more robust strategies for integrating rehabilitation services into pandemic response frameworks, optimising resource allocation, and ensuring the continuity of essential healthcare services even under challenging circumstances. as the healthcare landscape continues to evolve, the insights garnered provide a platform for understanding, reflection, and reform within the realm of rehabilitation practice. it calls for an ongoing commitment to address the challenges identified, cultivate inclusive, collective leadership, prioritise practitioner well-being and harness the potential of innovative solutions to enhance healthcare delivery and outcomes. acknowledgements we acknowledge the support of prof. shajila singh in initiating the research project. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors made significant contributions to this article. s.b., m.p., r.a., a.v., e.m., m.h., and j.v.d.l. conceptualised the study. s.b. coordinated the project and oversaw the scheduling of interviews and setting up meetings with the team. m.h., conducted the critical conversations. s.b., m.p., r.a., a.v., e.m. and j.v.d.l. completed the data analysis and write up. all authors reviewed and approved the final manuscript. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability derived data supporting the findings of this study are 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n.j., 2023, ‘developing a psychoeducational programme for caregivers of people with intellectual disability’, african journal of disability 12(0), a1195. https://doi.org/10.4102/ajod.v12i0.1195 original research developing a psychoeducational programme for caregivers of people with intellectual disability bonita k. gordon, nontembeko j. bila received: 28 jan. 2023; accepted: 24 july 2023; published: 22 sept. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in the western cape, south africa, a significant number of individuals with intellectual disabilities are cared for by caregivers who receive little or no compensation, education or support. despite the unique challenges faced by these caregivers, no psychoeducational programmes have been implemented for this particular population. objectives: the study aimed to examine the factors contributing to caregiver distress and develop a solution in the form of a psychoeducational programme for caregivers. methods: a mixed-methods research approach was employed. the qualitative phase involved exploratory research to gather fundamental information and gain new insights into caregiver distress. the quantitative phase utilised a ‘one-group pre-test, post-test design’ with a likert-scale questionnaire to enable meaningful interpretations and comparisons of the psychoeducational programme’s impact and value. the paired t-test was employed to determine significant differences between pre-test and post-test results. results: the statistical findings demonstrated a significant increase in knowledge, with 99% of respondents indicating a positive impact in reducing caregiver distress and 85% feeling better equipped to care for individuals with intellectual disabilities. conclusion: the psychoeducational programme developed in this study had a positive effect on reducing caregiver distress. contribution: this knowledge provides valuable insights for healthcare professionals in designing relevant intervention programmes, offering support and providing resources not only for individuals with intellectual disabilities but also for their caregivers. keywords: intellectual disability; formal paid caregivers; informal unpaid caregivers; psychoeducational programme; caregiver distress. introduction extensive research has demonstrated the demanding and burdensome nature of caring for individuals with intellectual disability (id) (ezeonu et al. 2021; mcconnell & savage 2015; panicker & ramesh 2019; steiner 2011; ugwuanyi et al. 2022). in the western cape region, the responsibility of caring for 98% of individuals with id falls upon their caregivers, who often remain as unacknowledged brave individuals within the id community (kench 2016; mckenzie, mcconkey & adnams 2016). these caregivers frequently sacrifice their aspirations and receive little to no compensation or recognition (coetzee 2016; kench 2016; perkins 2009). emotionally and physically neglected, they are at risk of burnout and depression (coetzee 2016). as individuals with id rely on their caregivers’ judgement in decision-making, the burden of care falls heavily on these caregivers. their responsibilities encompass managing challenging behaviours, navigating the healthcare, legal and social systems, as well as attending to daily living activities such as grooming (vecchio, cybinski & stevens 2009). the lack of evidence-based programmes to support caregivers has left them emotionally depleted (smith da walt, greenberg & mailick 2018). targeted psychoeducational programmes have proven to be effective in reducing caregiver stress and improving outcomes for both caregivers and individuals with id (smith da walt et al. 2018). while numerous studies have explored caregiving and id (adnams & johns 2016; lauderdale-littin & blacher 2017; mckenzie et al. 2016; smith da walt et al. 2018; yoong & koritsas 2012), as well as the prevalence of id in the western cape (kleintjes et al. 2006; mckenzie et al. 2016), and id resulting from foetal alcohol syndrome and its prevalence in the high-risk areas of the western cape (may et al. 2000, 2013), there is a lack of literature on a targeted psychoeducational programme specifically designed for both formal (paid) and informal (unpaid) caregivers of individuals with id in the western cape. the unique challenges faced by this population necessitate attention, and this study aims to address this research lacuna. this article aims to demonstrate that a targeted psychoeducational programme incorporating: (1) disability education, (2) problem-solving guidelines and (3) opportunities for social support among individuals with shared experiences can effectively alleviate caregiver distress. the theoretical foundations of the present study are the biopsychosocial theoretical framework and the strength-based approach. the biopsychosocial model, as distinguished by engel (1977, 2003), positions caregivers as experts who contribute to problem-solving solutions. this model views disability as a complex interplay of three factors: physical (bio), psychological (behavioural) and social (cultural environment) (petasis 2019). by adopting the biopsychosocial model, this study gained a comprehensive framework for understanding the needs, aspirations and interactions of individuals with id and their caregiver families (mcdaniel & pisani 2012). integrated with the biopsychosocial model, the strength-based approach was employed as a foundational principle for the study. the strength-based approach posits that individuals facing adversity and crises develop resilience and resourcefulness. they acquire skills to overcome challenges and view these obstacles as opportunities to showcase their resourcefulness and respond in culturally meaningful ways (moorkath, ragesh & hamza 2019). research methods and designs research approach and design the study comprised two distinct phases: (1) a qualitative phase followed by (2) a quantitative phase. in the initial qualitative phase, the primary objectives were to delve into the experiences of caregivers supporting individuals with ids and identify their specific knowledge and skill requirements. this phase aimed to gain insights into the challenges faced by caregivers and their unique needs. upon the commencement of the second phase, the focus shifted towards designing a psychoeducational programme tailored to caregivers of individuals with ids, drawing upon the needs and insights identified in the qualitative phase. the key goal was to enhance caregivers’ knowledge of id and equip them with the necessary skills to provide effective care. to accomplish this, several steps were taken in the quantitative phase. firstly, a pre-test assessment was conducted to evaluate caregivers’ existing knowledge of caregiving for individuals with ids. this provided a baseline measure against which the effectiveness of the psychoeducational programme could be assessed. secondly, the psychoeducational programme was implemented through comprehensive training sessions provided to the caregivers. these sessions aimed to address the identified knowledge and skill gaps and empower caregivers with the necessary tools to meet the challenges associated with ids. following the completion of the training, a post-test assessment was conducted to gauge the caregivers’ knowledge of caregiving for individuals with ids. by comparing the pre-test and post-test results, the effectiveness of the programme was analysed, allowing for an evaluation of its impact on caregivers’ knowledge and skills. based on the research findings from both phases, conclusions were drawn, and recommendations were made for further refinement and implementation of the developed psychoeducational programme. these insights served as a valuable guide for future enhancements and optimisations, ensuring that the programme could effectively support caregivers in their vital role of caring for individuals with ids. the study employed an embedded mixed-methods design, which is a variant of the broader mixed-methods research approach (ivankova, creswell & plano clark 2011). in this design, one data set plays a supportive, secondary role, while the study primarily relies on the other data set. the two data sets were collected simultaneously, allowing for a comprehensive analysis of the research question (creswell & clark 2011; delport & fouchè 2011). the decision to utilise the embedded mixed-methods design was driven by the need to investigate multiple groups within a specific time, primarily employing quantitative data collection methods. this design was deemed appropriate as it allowed for close integration of data collection and analysis at various stages, as highlighted by creswell and clark (2011) and fetters, curry and creswell (2013). by adopting the embedded mixed-methods design, the study was able to capitalise on the strengths of both quantitative and qualitative data, providing a more comprehensive understanding of the research topic. this design facilitated a nuanced exploration of the research question and enriched the overall analysis by incorporating different perspectives and insights derived from the two data sets. research setting and population the research population consisted of both informal and formal caregivers responsible for individuals with id in the western cape, south africa. informal caregivers encompassed unpaid individuals who were primarily biological family members, including mothers, fathers, siblings, grandparents, as well as other relatives, foster parents and community members directly involved in caregiving for a person with id. on the other hand, formal caregivers included paid professionals such as care assistants, nurses and housemothers working in residential homes, group homes and education centres specifically catering to individuals with id in the western cape. additionally, supervisors in protective workshops for individuals with id were also considered as formal paid caregivers. it is important to observe that the study excluded nurses who provided care for individuals with id in larger institutional settings such as hospitals. the focus of the study primarily centred on informal and formal caregivers directly involved in the day-to-day caregiving of individuals with id in various community-based and residential settings in the western cape. study selection and inclusion criteria: qualitative phase (informal caregivers) in the qualitative approach, non-probability sampling was employed because of the lack of precise information regarding the population size of informal caregivers in the western cape, resulting in an unequal chance of selection (creswell & clark 2011; maree & pietersen 2011a; strydom 2011). purposive sampling was utilised, wherein the authors’ judgement guided the selection of participants for the study. the sample consisted of caregivers who met the predefined criteria for the target population (maree & pietersen 2011a; strydom 2011). the selection criteria required participants to be full-time caregivers for individuals with id and residents of the western cape. a sample size of 25 informal caregivers was deemed sufficient to fulfil the objectives of the qualitative phase of the study. participants out of the 25 selected participants, 21 were females, accounting for 57% of the sample, with most of them being lone caregivers. among the participants, there were four males. the predominant role among the caregivers was held by mothers, totalling 15 participants. additionally, the sample included four fathers and one sister who were actively involved in caregiving responsibilities. interestingly, five participants had no biological relation to the individuals with an id they were caring for. instead, they were providing care through foster arrangements or private agreements. one noteworthy case was a neighbour who stepped in to care for a person with an id after recognising that the biological mother was struggling to cope with the responsibilities. the ages of the participants ranged from 32 to 70 years, representing a diverse age range within the caregiver sample. most informal caregivers in the study were responsible for the care of a single individual with id. however, there were a few notable cases: one caregiver was caring for two siblings with id, and another caregiver had the responsibility of caring for three biological children diagnosed with id. in four instances, both the father and mother participated in the interview as caregivers for the same individual with an id. this suggests a shared caregiving role and involvement of both parents in the care process. regarding the gender profile of the individuals with id, it was observed that the majority were males, totalling 18, while 6 were females. among the individuals with id, 10 were minors, meaning they were under 18 years, and 14 were adults. the ages of individuals with id ranged from 4 to 40 years. it is worth noting that in all cases, the individuals with id resided at home with their respective caregivers, indicating a familial caregiving arrangement. study selection and inclusion criteria: quantitative phase (formal caregivers) in the quantitative phase of the study, probability sampling was employed as the authors had access to a list of names, allowing for a completely random selection process. to obtain this list of names, invitations were sent out to various group homes, workshops and day centres. caregivers who received the invitation were encouraged to respond by completing a registration form provided via email. as a result, the authors compiled a list of formal caregivers who had completed the registration form, creating a pool from which a random selection could be made. this random selection process adhered to the principles of probability sampling (maree & pietersen 2011a; strydom 2011). the selection criteria for the employed caregivers in the quantitative phase were as follows: (1) they had to be formally employed by an organisation, such as a residential group home or protective workshop; (2) the primary focus of their employment had to involve taking care of a person with id and (3) they needed to reside in the western cape. these criteria ensured that the sample of formal caregivers represented those who were employed within relevant caregiving contexts in the western cape. to ensure a comprehensive representation of the study population, the largest feasible sample size was obtained (strydom 2011). this approach aimed to include participants who encompassed various socioeconomic classes and genders, thereby enhancing the generalisability of the findings to the entire population (strydom 2011). to meet the objectives of the quantitative phase, a predetermined sample size of 100 respondents was selected to participate in the training (maree & pietersen 2011a). this sample size was deemed sufficient to achieve the desired outcomes of the study and to provide robust data for analysis and interpretation. respondents the research training predominantly attracted female caregivers, accounting for 94% of the participants, while only 6% were male caregivers. among the participants, 47% had acquired their caregiving knowledge through workplace experience without formal caregiver training. furthermore, they had received no specific training related to id. on the other hand, 49% of the respondents reported having a formal qualification or training as a caregiver. however, it should be noticed that 26% of those individuals had not received training specifically focused on id. as a result, a significant proportion of the respondents, approximately 73%, lacked training in the context of id. in terms of income, 57% of the participants reported earning less than r5000.00 per month. data collection during the qualitative phase, a semi-structured interview schedule was developed to collect data, aiming to obtain a comprehensive understanding of the experiences and needs of unpaid caregivers of individuals living with id (greeff 2011). to enhance the transferability of the findings, experts in the field were also interviewed alongside informal caregivers, as gathering information from multiple sources is considered valuable (anney 2014; schurink, fouché & de vos 2011). the experts who participated in the study were healthcare and educational professionals specialising in id within the western cape. their expertise was crucial in providing valuable insights, guidance and feedback on the content of the psychoeducational programme and questionnaires. additionally, a qualified statistician reviewed the questionnaires to ensure their validity and reliability. the professionals’ role as experts allowed them to anticipate and identify potential challenges or omissions that could hinder the study’s objectives. their input was instrumental in shaping the programme and ensuring its effectiveness. on the other hand, the interviews conducted with informal caregivers aimed to capture their lived experiences and understand their specific needs as caregivers of individuals with id. their perspectives and first-hand accounts provided valuable insights into the challenges, concerns and support requirements faced in their caregiving roles. the development of the psychoeducational programme was a meticulous process that incorporated a thorough review of existing literature and the insights gained from the first qualitative phase of the study. the identification of various needs and skills required by caregivers of individuals with id served as a foundation for designing the programme. to ensure a comprehensive and effective programme, a collaborative approach was adopted, involving both experts and caregivers. their collective expertise and experiences, combined with the existing literature, contributed to the development of a well-rounded training manual. the training manual was carefully crafted, considering the unique challenges faced by caregivers and drawing upon evidence-based practices. it aimed to address the identified needs, provide valuable education on id, offer practical problem-solving guidelines and foster opportunities for social support. the manual served as a guide for the implementation of the psychoeducational programme, providing structured training sessions that focused on empowering caregivers with the necessary knowledge and skills to enhance their caregiving experiences and support the well-being of individuals with id. the psychoeducational programme comprised the following four modules: (1) psychoeducation on intellectual disability for caregivers; (2) psychosocial impact on caregivers; (3) strengthening the family unit and (4) accessing and developing resources. module a: psychoeducation on intellectual disability for caregivers module a aimed to provide caregivers with essential knowledge on id, addressing misconceptions and promoting accurate understanding. it focused on identifying and addressing cognitive distortions that could hinder effective caregiving. the module also emphasised meeting the care needs of individuals with id, covering topics such as personal care, communication strategies, independence promotion and the importance of medication adherence. module b: psychosocial impact on caregivers module b addressed the psychosocial challenges faced by caregivers and provided coping strategies and support. it explored caregivers’ daily challenges and offered insights into effective coping mechanisms. the module introduced the concept of resilience and provided strategies for developing resilience in the caregiving role. emphasising the importance of self-care, practical exercises were introduced to promote self-care practices. caregivers learned about emotional acceptance and commitment as crucial aspects of their well-being. they were encouraged to strive for being a ‘good enough’ caregiver, recognising that perfection is not the goal. the module emphasised the significance of having an internal locus of control and included a practical exercise on understanding the dichotomy of control. module c: strengthening the family unit module c focused on empowering caregivers to address challenging behaviours exhibited by individuals with id, strengthening the family unit in the process. caregivers gained insights into the causes of these behaviours, learning to identify triggers and understand underlying factors. proactive approaches and effective techniques were provided for managing challenging behaviours. additionally, the module covered managing family conflict and promoting household safety. module d: accessing and developing resources module d focused on equipping caregivers with the skills of resourcefulness, addressing the frustrations expressed by caregivers regarding the lack of resources for individuals with id. the module aimed to empower caregivers in identifying and accessing resources while being assertive and proactive in meeting their needs. caregivers learned techniques for identifying available resources within their community or support networks. they were encouraged to maintain thorough records of resources, ensuring easy access when needed. the module also aimed to enhance caregivers’ mindset towards developing their resources, such as building a support team equipped with the necessary skills. the training event focused on formal caregivers and served the research purpose. to collect data, preand post-test questionnaires were administered. the pre-test questionnaire was given before the intervention programme to gather baseline information. the likert-scale questionnaire used in the survey was developed based on a comprehensive study of caregiver issues (browne & greene 2005). following the completion of the intervention programme, the post-test questionnaire was administered to assess the increase in knowledge among participants and their perception of the programme’s positive impact on alleviating caregiver distress. the preand post-test results were combined and analysed, allowing the researcher to draw valuable interpretations and make comparisons regarding the effectiveness and value of the psychoeducational programme (fouché, delport & de vos 2011; pietersen & maree 2011). to ensure the reliability of the data, an independent coder was employed. their involvement added to the trustworthiness of the findings. data analysis during the qualitative phase, the interviews were transcribed from audio recordings into written text. any interviews conducted in afrikaans were translated into english. the transcribed data were organised and stored in an electronic folder for easy access during data reduction, representation and interpretation (nieuwenhuis 2011). to gain a deeper understanding of the non-textual data, the audio recordings were played and reviewed multiple times (schurink et al. 2011). thematic analysis was employed to identify emerging themes, patterns and their underlying meanings (roberts, dowell & nie 2019). this analytical approach aimed to uncover and critically assess the recurring themes present in the interview data. to ensure the credibility of the analysis, the emerging understanding was tested and evaluated, considering aspects that may not have been explicitly stated in the data but could be significant for analysis. the absence of new themes indicated that data saturation had been reached, indicating sufficient depth and coverage of the information (schurink et al. 2011). the psychoeducational programme developed in the second phase for formal caregivers was based on valuable information obtained from literature reviews and the empirical findings of the in-depth interviews with informal caregivers. this ensured that the content of the programme was grounded in both theoretical knowledge and the practical experiences of caregivers. during the second phase (quantitative), the data analysis was conducted in collaboration with a statistician. to ensure consistency and accuracy, a codebook and a memorandum were developed outlining the scoring criteria for the responses. the data were coded by assigning numerical values to the responses provided by the participants who completed the preand post-test questionnaires. each participant’s score was calculated by summing the assigned values for their responses. the scoring system involved categorising attitudes on a scale of 1–4, with 1 representing ‘strongly agree’ and 4 representing ‘strongly disagree’. the values for each participant’s responses were then added to determine their overall attitudes or values. this scoring method, as guided by delport and roestenburg (2011) and maree and pietersen (2011b), allows for quantitative analysis of the data, enabling comparisons and statistical interpretations to be made. the collaboration with a statistician ensured that the data analysis process was rigorous and accurate. the data were prepared for analysis using microsoft excel 365, as recommended by fouchè and bartley (2011). the preand post-test responses were scored and merged to facilitate comparison and analysis. this scoring method enabled the examination of changes in knowledge levels between the preand post-test sections of the preliminary intervention programme. by comparing the scores, it was possible to evaluate the participants’ knowledge before the intervention and assess the knowledge gained during the programme. to present the descriptive results clearly and understandably, charts and tables were utilised. visual representations, such as figures and graphs, are effective tools for conveying information and enhancing comprehension, as suggested by creswell and clark (2011). moreover, to assess the strength of the comparison for each question, a paired t-test was employed. this statistical test involved calculating the numerical difference between the post-responses and the pre-responses for each participant and each question. these average differences were then evaluated using a t-distribution, as they follow a t-distribution pattern. the purpose of the t-test was to determine whether the differences observed were significantly greater than zero, indicating a meaningful change. because we were comparing two responses from the same participants, this test is referred to as a ‘paired t-test’, as described by pietersen and maree (2011). ethical considerations the study obtained ethical approval from the human research ethics committee of the university of pretoria (hrec reference no.: hum034/0720). informed consent was obtained from all participants, ensuring that they were fully aware of the purpose, procedures and potential risks involved in the study. ethical principles such as avoiding harm and deception, maintaining confidentiality and providing debriefing to participants were strictly adhered to throughout the research process. pseudonyms were used to ensure the confidentiality of the participants. results qualitative research findings: first phase the thematic analysis led to the emergence of the following main categories of themes. the lack of psychoeducation of the caregiver the findings highlight that a lack of psychoeducation among caregivers contributes to caregiver distress. the evidence revealed that some participants held misconceptions, such as believing they were personally responsible for the disability or that their family was cursed. many participants expressed dissatisfaction with the limited information provided by professionals in the field, prompting them to conduct their research. the following verbatim statements from participants support these assertions: ‘i was on antibiotics, and i did not know that it would interfere with my pregnancy. i always told my husband that i am the cause for my child being the way he is.’ (married mother, 21-year-old son with id) ‘look, i did not know much at the time. i had to figure things out for myself as life went on. because i did not know what it [intellectual disability] was, i had to investigate it, read about it, go to workshops, go to red cross, and educate myself and, you know, all the mothers sit and talk to each other and give advice. i was not clued up.’ (divorced mother, 31-year-old son with id) ‘people were telling me that it’s witchcraft and that someone is jealous of me.’ (married mother, three adult children with id) most caregivers expressed the difficulties they face in coping with the challenging behaviour of individuals with id, often feeling uncertain about how to effectively manage such behaviour. some caregivers candidly admitted to resorting to desperate measures in these situations. for instance, one mother shared her regret about a past incident where she resorted to physically hitting her child, resulting in the child requiring hospitalisation. another mother mentioned using cigarettes to calm down her son, and disturbingly, she even mentioned the possibility of using extreme measures such as burning him with a kettle if the violence were to escalate: ‘the cigarettes calm him down a bit and i know that he needs them; so, i had to make a plan [during covid-19] so that he could have a cigarette … he used to choke me and he used to break a lot of things. there were times i would switch on the kettle because i would think if this child did any harm, i would burn him. that is the desperation.’ (single mother, 21-year-old son with id) ‘hy het my hele huis opgebreek. toe kon ek nie anders nie en toe slaan ek hom, en toe slaan ek hom hospital toe. ek het myself verwyt dat ek hom geslaan het.’ [he damaged my home. i felt that i had no choice and so i hit him. i beat him to the point he had to go to hospital. i blamed myself for hitting him like that.] ‘n mens weet nie hoe om na ‘n gestremde kind te kyk nie. sy slaan my so dat ek sterretjies sien. ek het nie geweet wat om te maak nie.’ [one does not know how to take care of someone with a disability. she hit me to the extent that i saw stars. i didn’t know what to do.] (pensioner, 28-year-old daughter with id) socioeconomic impact of caregiving the findings of the study reveal that the caregiver role significantly affected the participants’ ability to work and support themselves and their families. many caregivers relied solely on the disability grant as their primary source of income: ‘lisa is very expensive; she eats the whole day. lisa’s disability grant is my only income. i used to iron but i can’t even go char because my sister refuses to watch her for me because of her behaviour. i must pay rent with her money.’ (single mother, 17-year-old daughter with id) consequently, many caregivers expressed anxiety about the future care and provision for the person with id when they were no longer able to fulfil the caregiving role: ‘i always have this fear and anxiety. who will take care of him when we are not there anymore. no one understands him as we do.’ (married mother, 22-year-old son with id) ‘i say “god, if you have to take me then please take adrian with me so that i can go in peace.”’ (pensioner, 37-year-old son with id) caregiver resource constraints the evidence revealed that many participants attempted to seek assistance but encountered significant challenges. they consistently found that medical, police and social work services were either unavailable or inadequately equipped to support their needs: ‘the system fails us. the social workers were always unavailable. she never pitched up and was never even an apology. no professional courtesy. i mean that is their job. she has taken a fat cat salary; the children are so vulnerable and falling through the cracks and we can’t get help for them.’ (single mother, two teenage children with id) ‘i used to call the police and they just came and couldn’t do much. the police stopped coming when i call because they don’t know how to deal with this. he started to get aggressive and attacked us physically. we went to the voice for help. the voice is the newspaper, we were on the front of the voice, i appealed to the public to help us, but it didn’t help.’ (widow, 31-year-old son with id) psychosocial impact on the caregiver the evidence indicates that caregiving for a person with id has a profound psychosocial impact on the caregivers. the participating caregivers expressed their individual experiences of lacking support and feeling isolated. additionally, they faced community stigmatisation, which further contributed to their sense of isolation. family relationships were also affected by the demands of caregiving, and caregivers struggled to prioritise their own mental and physical well-being: ‘i am not happy about the breakup with the father. i am very sad about that. i don’t have friends since 2017. since he is born.’ (single mother, 4-year-old son with id) the evidence reveals that a significant number of participants shared their experiences of stigmatisation, which left them feeling vulnerable and at risk. they recounted instances of being subjected to mockery and hurtful name-calling by members of their community, directed towards both themselves as caregivers and the individuals with id under their care: ‘i walk with my kids in the mall. in public people mock and point at my kids. i tell myself to stay strong. i have realised society has cast them out. they call us the “house of stupid people” and they labelled my house. people can call you names, and it can stick like glue!’ (married mother, three adult children with id) the present research also uncovered that some participants found their role as caregivers to be rewarding and fulfilling. the study delved into the factors that contributed to their positive experiences. here are a few direct quotes from the participants themselves: ‘they have a mind of their own and we need to be patient with them. we need to be accepting of people that are different. what do we call different? there is nothing wrong with them. they are god’s people as they are your way to heaven. they are special people.’ (single mother, 13-year-old son with id) quantitative research findings: second phase pre-test versus post-test results the caregivers were asked to rate their confidence in their knowledge of the following topic as presented in table 1. table 1: statistical summary of the pre-versus post-test results. the results revealed that an overwhelming majority of the respondents, specifically 99%, expressed that the psychoeducational programme had a positive impact in alleviating caregiver distress. as part of the data collection process, respondents were asked to provide additional comments to elaborate on their answers. here are some verbatim excerpts from their written responses: would this psychoeducational programme have a positive impact on alleviating caregiver distress?: ‘i learned i am not a failure.’ ‘meaningful to know what to do.’ ‘it provided an opportunity to reflect on myself and how i have been doing my job.’ ‘this program gave me clarity on some situations.’ ‘it helps me to make sound decisions on behalf of my client.’ in the following section, the respondents’ views on whether they felt more equipped to take care of a person with id after having attended the training were explored. based on figure 1, the data indicate that 85% of the respondents felt much better equipped to take care of a person with id after completing the training. an additional 14% felt somewhat more equipped, while only 1% reported feeling the same as before the training. figure 1: degree of feeling equipped after training. the respondents expressed that the psychoeducational programme significantly increased their confidence and competence as caregivers. they highlighted that the programme improved their understanding of id, which directly enhanced their ability to provide effective care. the following are verbatim responses that support this: ‘i learned stuff i never knew about people with intellectual disability.’ ‘i have gained so much knowledge with this program.’ ‘i learned a lot more about what the caregiver must do.’ ‘the material is designed to equip the caregiver, but also equip the person with id to function better.’ discussion a caregiver is any individual who provides nurturing acts or attends to the needs of someone requiring such assistance. caregiving involves a range of responsibilities, including offering emotional support, aiding with healthcare and medical requirements, assisting with daily activities and facilitating referrals to appropriate medical professionals when necessary (schulz & edin 2016). caregivers can be categorised as either formal or informal. the distinction between these two categories lies in the caregiver’s level of expertise and knowledge, as well as the compensation they receive for their caregiving services (musich et al. 2018). formal caregivers are recognised as having the necessary skills and knowledge to provide care to recipients. the primary objective of the study was to investigate the underlying factors that contribute to caregiver distress and subsequently develop a viable solution in the form of a psychoeducational programme specifically designed for caregivers. the findings of this study align with the research conducted by ezeonu et al. (2021), which emphasises that most caregivers lack an understanding of the causes of id. as a result, caregivers tend to attribute distinct reasons to id, such as viewing it as a punishment from god, superstition and bewitchment, or perceiving it as a spiritual attack or demon possession (ezeonu et al. 2021; mkabile et al. 2021). caregivers need to have a clear understanding of id as it directly contributes to their ability to effectively cope with the challenges associated with caring for individuals with id (ezeonu et al. 2021). in a study conducted by simpson et al. (2022), it was noticed that caregivers expressed an ardent desire for knowledge and training in this area. the research findings of simpson et al. (2022) further indicate that the training priorities identified by caregivers include the management of problematic behaviour, knowledge and understanding of id, and practical interventions that encompass positive support in caregiving. these studies highlight the importance of providing caregivers with education and training to enhance their understanding of id and equip them with effective strategies for caregiving. the findings support the need for interventions that address caregivers’ knowledge gaps and prioritise areas such as behaviour management and practical caregiving approaches. by addressing these priorities, caregivers can enhance their ability to provide optimal care and support for individuals with id. furthermore, this study provides unmistakable evidence that many participants lacked the necessary knowledge and training to effectively manage challenging behaviour in individuals with id (tilley, ledger & bardsley 2015). the experiences shared by the participants regarding the lack of psychoeducation align with a study conducted on caregivers of individuals with id in khayelitsha, a district in cape town, by mkabile and swartz (2020). these authors found that most caregivers received inadequate information from medical practitioners regarding their children’s condition. newcomb and hagopian (2018) state that children with id exhibit challenging behaviour at higher rates compared with their typically developing peers. behaviours such as self-injury (e.g. head banging), aggression, pica (ingesting non-food items), disruption and wandering can significantly impact the quality of life for both the individual with id and their family. these findings highlight the importance of addressing and effectively managing challenging behaviours to improve the overall well-being of individuals with id and their families (newcomb & hagopian 2018). the findings of this study align with existing literature regarding the socioeconomic impact of caregiving. caregivers bear significant daily care responsibilities, and the sacrifices they make often have financial implications (marsack-topolewski 2021; perkins 2009; marsack-topolewski & church 2019). the findings also validate the caregivers’ expressed anxiety about the future care and provision for individuals with id, as reported in previous research. parents of individuals with id commonly experience higher rates of stress, depression and anxiety because of the lifelong support that their children require, often placing the responsibility on the families (mcconnell & savage 2015; mckenzie, mcconkey & adnams 2013; panicker & ramesh 2019). the experiences described by the participants highlight the stigmatisation and discrimination faced by caregivers of individuals with id when accessing healthcare, as supported by previous studies (mkabile & swartz 2020). inadequate medical and care support often leads to referrals to healthcare professionals and social workers. however, there remains a shortage of appropriately qualified healthcare professionals in the field of id (coetzee et al. 2019). the findings of this study highlight the profound psychosocial impact that caregiving for a person with id has on caregivers. the shared experiences of family conflict among informal caregivers because of their caregiving responsibilities align with existing literature, which consistently reports a lack of social support among caregivers of individuals with ids (dada, bastable & halder 2020; ugwuanyi et al. 2022). the evidence further reveals that a significant number of participants expressed their experiences of stigmatisation. this aligns with previous research, indicating that caregivers of individuals with id face stigmatisation and discrimination, which create barriers when seeking access to healthcare (mkabile & swartz 2020; scior et al. 2020). the findings of this study highlight the pressing need for psychoeducation among both informal and formal caregivers of individuals with id. furthermore, supporting this finding, petersen and lund (2011) highlight the existence of significant deficiencies in community-based psychoeducational rehabilitation programmes in south africa. they argue that the provision of community care is insufficient, as demonstrated by the high rates of hospital admissions and the reliance on police and prison services. coetzee et al. (2019) support this perspective, stating that limited training opportunities are available for caregivers of individuals with id in south africa. moreover, the literature reveals a lack of integration of id-related programmes into academic and in-service training for practitioners in south africa (kleintjes et al. 2020; smith da walt et al. 2018). this lack of integration hampers the development of competence in health, social care and education service delivery (kleintjes et al. 2020). collectively, these factors contribute to the need for improved psychoeducational resources and training programmes to enhance the skills and knowledge of caregivers in south africa. furthermore, the study reveals that informal caregivers, often mothers, are predominantly responsible for the care of individuals with id (ezeonu et al. 2021; mak & cheung 2008; mckenzie 2016). consequently, most caregivers are women, particularly those who are single, divorced or widowed (ezeonu 2021; lafferty et al. 2016; mckenzie 2016). these caregivers, mostly unpaid, assume their duties without any financial compensation. the poverty trends in south africa report (2017) identifies vulnerable groups, including females, youth and individuals with no education, who are more susceptible to poverty. coetzee (2016) asserts that caregivers experiencing poverty and hardship often struggle to allocate sufficient resources to meet the needs of individuals with id. moreover, the research findings indicate that caregivers often face challenges in pursuing their employment or are compelled to resign from formal employment because of their caregiving responsibilities (gona et al. 2011). capri et al. (2018) explain that the lack of educational programmes for individuals with id in south africa, coupled with the burden of caregiving and a lack of support, hinders informal caregivers from seeking employment opportunities. nonetheless, informal caregiving remains the primary option for many individuals with id in the western cape (mckenzie 2016). research studies conducted by mcconnell and savage (2015), panicker and ramesh (2019) and steiner (2011) provide evidence that parents of children with id experience elevated levels of stress and depression compared with parents of typically developing children. according to steiner (2011), caregiver well-being, which encompasses reduced stress, symptoms of depression and negative affect, is closely linked to the behaviour of the individual with id. however, mcconnell and savage (2015) argue that caregiver distress may precede and contribute to the behavioural difficulties exhibited by individuals with id. they suggest that high levels of caregiver distress are associated with suboptimal caregiving practices, which in turn can lead to the emergence of behavioural problems in the individual with id. nonetheless, mcconnell and savage (2015) acknowledge that the relationship between caregiver distress and behavioural problems is often seen as a transactional process. the research results further correlate with literature, which indicates that psychoeducational programmes that have been documented to have catalysed improvements in caregiver well-being included educating caregivers regarding cognitive-behavioural therapeutic strategies to manage the challenging behaviour of the person with id in their care (mcconnell & savage 2015; steiner 2011). the research results align with existing literature that highlights the effectiveness of psychoeducational programmes in improving caregiver well-being. these programmes focus on educating caregivers about cognitive-behavioural therapeutic strategies to manage the challenging behaviour of individuals with id under their care (mcconnell & savage 2015; steiner 2011). moreover, in addition to teaching specific therapeutic techniques, the ability of caregivers to recognise and appreciate the positive attributes of the individuals they care for is crucial for positive outcomes (mcconnell & savage 2015; steiner 2011). identifying these positive characteristics in individuals with id and nurturing the caregiver-person relationship can be particularly beneficial, considering that the stressors associated with the disability are long term. by adopting a strength-based cognitive approach, caregivers can develop a more positive perspective on the behaviour of individuals with ids (duan & bu 2019; steiner 2011). a comprehensive psychoeducational programme for caregivers should also include a proactive plan for effectively managing challenging behaviour exhibited by individuals with ids (leoni et al. 2016). this is especially crucial for formally paid caregivers who often encounter distressing situations as part of their daily responsibilities in facilities catering to individuals with id (leoni et al. 2016). frequent exposure to such incidents can potentially result in the development of maladaptive coping mechanisms, leading to detrimental effects on their mental health, psychological well-being, increased absenteeism and decreased productivity (leoni et al. 2016). consequently, the psychological distress experienced by formal caregivers can have significant financial implications for the organisation they work for (leoni et al. 2016). therefore, incorporating strategies to address the psychological well-being of formal caregivers is essential for promoting a healthy work environment and maintaining optimal caregiving standards. the study demonstrated a significant strength in its implementation of a targeted psychoeducational intervention programme, which effectively alleviated caregiver distress. the respondents reported a reduction in feelings of social isolation, hopelessness, depression, anxiety and low self-esteem, all of which contributed to their sense of burden. these findings align with previous research conducted by smith da walt et al. (2018) and support the effectiveness of such interventions in improving caregiver well-being. the study was grounded in two theoretical frameworks: the biopsychosocial model and the strength-based approach. the biopsychosocial model provided a lens through which to understand the interplay between biological, psychological and social factors in caregiver well-being. this model recognised the significance of physical well-being, emotional well-being and the presence of a support network in shaping the overall well-being of caregivers. it highlighted the interconnectedness of these three domains and their influence on the caregiver’s experiences. the strength-based approach, on the other hand, framed the caregiving of individuals with id within a framework of core strength principles. these principles encompassed social justice, transparency, empowerment, collaborative partnership, resilience and strength building. this approach emphasised the importance of recognising and harnessing the strengths and resources of caregivers, rather than solely focusing on deficits or challenges. it aimed to promote a positive and empowering caregiving experience by fostering collaboration, resilience and the enhancement of existing strengths. by integrating the biopsychosocial model and the strength-based approach, the study sought to provide a comprehensive understanding of caregiver well-being and highlight the potential for positive outcomes and growth within the caregiving process. limitations it is important to acknowledge that language barriers may have hindered the study, as the questionnaires were in english, which was not the first language for most of the respondents. this could have influenced how the questions were understood and answered, potentially impacting the research outcomes. furthermore, the programme was designed as a one day training intervention, which may not have been sufficient considering the complexity of id. caregivers may require more extensive training than what was provided. another limitation of the study was the lack of participation from individuals with id. it is important to respect their unique perspectives and insights regarding their care needs and desired support from caregivers. including their views would have added significant value to the psychoeducational programme. additionally, the study relied on participants’ subjective evaluations and perceptions of their knowledge, rather than objective assessments. this introduces the possibility of bias or inaccurate self-assessments. lastly, a notable limitation of the study was the use of a training manual developed based on interviews with informal caregivers, while the preliminary intervention involved formal caregivers. formal caregivers may not have the same lived experiences as informal caregivers, potentially impacting their responses to the questionnaires. conclusion the findings of this study highlight the importance and positive impact of the psychoeducational programme in reducing caregiver distress and improving their psychological well-being. by addressing the existing gap in the literature, this study aimed to contribute significantly to the well-being of individuals with ids by deepening the understanding and knowledge of their condition and enhancing the skills of their caregivers, including parents, siblings and neighbours. furthermore, the study also has broader implications for organisations that provide residential care to individuals with ids. it offers valuable insights into the experiences and challenges faced by their employed caregivers who are entrusted with the care of these individuals. this information can empower management to re-evaluate the existing support structures in place and determine if they adequately meet the needs of formal caregiver employees. additionally, it equips management with the necessary tools to enhance the skills and capabilities of their caregivers, ultimately improving the overall quality of care provided. recommendations it is crucial to recognise that caregivers of individuals with ids have unique and varied needs. therefore, it is imperative to involve and consult caregivers during the development of any caregiver support programme. the programme should be flexible and adaptable, allowing for customisation to address the evolving and diverse cultural needs of the caregivers. this approach also necessitates seeking input from caregivers when conducting evaluations of health and social services to ensure that their perspectives and experiences are considered. furthermore, it is essential to include caregivers and their families in the distribution of resources. these resources should be appropriately tailored and allocated to meet the specific needs of both the individual with id and their caregiver household. by recognising the integral role that caregivers play in the lives of individuals with ids, it becomes evident that supporting them through resource allocation is vital for enhancing the overall well-being and quality of care provided. the next, critical, step is to refine the psychoeducational programme and continue educating caregivers on the most effective strategies for resilient caregiving. the findings from this study underscore the importance of fostering collaboration between social and healthcare service providers and caregivers to enhance the caregivers’ ability to provide care. it is essential to further explore the long-term impact of the implemented intervention programme on caregivers, individuals with id, their families and the broader communities. future research, particularly in the form of a longitudinal study, is necessary to determine whether the intervention programme has a sustained effect on all stakeholders involved. future research should prioritise gaining a comprehensive understanding of the phenomenon that places females in the role of caregivers for individuals with id. this understanding can inform the development of policies, procedures and resource allocation strategies to address the specific needs of caregivers. expanding the availability of the psychoeducational programme to a wider audience is recommended to alleviate caregiver distress on a broader scale. building upon the findings of this study, it is recommended to further investigate the needs of caregivers in terms of resource distribution. this could involve exploring options such as providing financial grants to caregivers of individuals with id, in addition to focusing on resources exclusively for individuals with ids. furthermore, future research should examine the relationship between social support structures and caregiver distress, with a focus on developing appropriate social support networks and interventions to alleviate the distress experienced by caregivers. additionally, it is suggested that future research explores the development of early intervention programmes specifically tailored for caregivers whose child has been newly diagnosed with an id. these programmes could encompass individual acceptance counselling, social support group interventions and psychoeducational training to equip caregivers with the necessary skills and knowledge to navigate the challenges associated with the diagnosis. acknowledgements competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions b.k.g. was involved with the conceptualising, research question, methodology, investigation and data analysis and is the lead author of this article. n.j.b. was the research supervisor. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available on request from the corresponding author, b.k.g. disclaimer the views expressed in the article are those of 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university, oxford, united kingdom willene a. holness school of law, college of law and management studies, university of kwazulu-natal, durban, south africa navi pillay research group, durban, south africa ruth t. nyamadzawo school of law, college of law and management studies, university of kwazulu-natal, durban, south africa dennis moogi school of law, college of law and management studies, university of kwazulu-natal, durban, south africa action for children with disabilities, nairobi, kenya citation clark, b.j., holness, w.a., nyamadzawo, r.t. & moogi, d., 2024, ‘implementing early childhood education for children with disabilities in south africa and kenya’, african journal of disability 13(0), a1326. https://doi.org/10.4102/ajod.v13i0.1326 original research implementing early childhood education for children with disabilities in south africa and kenya brigitte j. clark, willene a. holness, ruth t. nyamadzawo, dennis moogi received: 31 aug. 2023; accepted: 21 feb. 2024; published: 08 may 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the immediate implementation of early childhood education (ece) for children with disabilities in south africa and kenya has been impeded by obstacles. major gaps in implementation remain. we investigate, firstly, the widely held, but in our view fallacious, belief that the implementation of inclusive ece can be progressively realised only when there are available resources. secondly, we examine the other fallacious belief that children with severe and profound intellectual disabilities are ineducable, and thirdly, the belief that the provision of inclusive ece is merely a regulatory governmental function, implying that accessibility and reasonable accommodation requirements for children with disabilities do not rest primarily on the state. objectives: this study aimed to investigate the gaps in both countries between the policies and legislation and effective implementation, to show that these gaps are exacerbated by the perpetuation of these fallacious beliefs and by information vacuums at governmental level. method: a critical analysis of inclusive ece was undertaken on relevant law and policy processes in both countries to expose both governments’ reasons for their lack of effective implementation of inclusive ece. results: the factors contributing to the lack of immediate and significant implementation of inclusive ece for children with disabilities in both countries have been investigated. conclusion: accountability and transparency need to be implemented at the governance level to ensure that both governments fully implement and prioritise inclusive ece. contribution: this article establishes that mistaken premises and information vacuums may be used by governments in an attempt to renege on their international and constitutional obligations to implement inclusive ece. keywords: early childhood education; children with disabilities; children’s rights; legislation and policy. introduction from the perspective of human rights lawyers, academics, and experts in early childhood education (ece) and child disability law, we investigate some widespread (but, in our view, fallacious) premises and beliefs about ece, also known as early childhood development (ecd), for children with disabilities in kenya and south africa (sa) to expose the misconceptions about state responsibilities in this regard. we undertook a critical analysis and evaluation of relevant law and policy processes in both countries on inclusive ece and identified a policy-implementation gap exacerbated by certain ideological notions and information vacuums. both countries have undergone recent law and policy reform processes (nthenge 2017; philpott 2014), in particular, the provision of ece is now the responsibility of the departments of education and not social development in both countries. this move occurred in 2017 in kenya and in 2021 in sa. however, in both countries, the major obstacles preventing children from accessing quality education at ece level include negative attitudes towards disability, and a lack of resources, funding, facilities and trained personnel to effectively cater to the diverse needs of children with disabilities (dombrowski, sitabkhan & kilonzo 2023). unfortunately, major gaps remain and the checking and evaluating of ece programmes has been inconsistent and opaque at times, with scant regard for improving access to quality-inclusive ece and no acknowledgement that the barriers to access are not insurmountable (karisa et al. 2022; samuels et al. 2015). children with disabilities require special attention and care in their ece phase (who 2018). the early years of any child’s life are very significant in their development, and children with disabilities urgently require support from birth to fulfil their potential (ashley-cooper, van niekerk & atmore 2019). the emphasis should be on the urgent need for states, firstly, to offer a comprehensive package of ece, secondly, to improve disaggregated data collection, and thirdly, to allocate adequate funding for inclusive ece (almasri et al. 2023). while international law does not explicitly refer to a right to ece, scholars have convincingly argued that such a right can be read into the right to access basic education (fredman et al. 2022). international law obliges state parties to offer ‘affordable, accessible, quality, inclusive ecce, with adequate resources’ (fredman et al. 2022:1). the convention on the rights of the child (crc), the international covenant on economic, social and cultural rights (icescr), and the convention on the rights of persons with disabilities (crpd) consistently demonstrate that states must provide this inclusive ece (fredman et al. 2022). international law also requires states to take measures to ensure equality and inclusion of children with disabilities in the services provided to them, with reasonable accommodation where needed (crpd art 2(4), art 24 (2) (c), crc 28(1), acrwc art 13). this article does not aim to provide an exhaustive list of the applicable international law or legislative provisions as this has already been covered by other authors (bekink 2022; nthenge 2017). instead, we focus on the need for critical analysis and evaluation of the existing laws and policies on inclusive ece in sa and kenya. we seek to investigate some of the beliefs or myths, which may impede the intended outcomes and delivery of equitable access. in this regard, hayes and bulat (2017) also dispelled various myths in relation to inclusive education in their seminal article on the negative impact of inclusive education on children without disabilities living in lowand middle-income countries such as sa and kenya and many others globally. those authors addressed the fallacious notions that inclusive education was more expensive than education in specialised (segregated) settings; that segregated options were more effective; that limited resources should translate into prioritising education of non-disabled students; and that education of children with disabilities was a luxury not available to lowand medium-income countries. firstly, we address the notion that inclusive ece is not urgent and can be progressively realised when there are available resources. secondly, we address the notion that children with severe and profound intellectual disabilities are ‘ineducable’. the last notion that we address relates to the assumption that inclusive ece is only a regulatory duty for national governments, enabling them to bypass the accessibility and reasonable accommodation obligations resting on the state in this regard. a contextual background on kenya and sa is provided, illustrating, not only the incoherent and lackadaisical implementation of policy and legislation (largely as a result of many of these premises listed above) but also the advances made from litigious intervention – particularly in sa. contextual background kenya since 1963, ece has been an essential component of the kenyan education system (wanjohi 2011). international treaties have been directly imported and domesticated through article 2(6)13 of the 2010 constitution, including the crc and crpd. despite this, major challenges to accessing quality inclusive ece involve cultural prejudice and negative attitudes, poverty, insufficient data, and inadequate tools for assessing and identifying children with disabilities still exist, (sessional paper no. 1 of 2019). equitable access is further constrained by regional differences, a lack of inter-sectoral coordination (neuman & devercelli 2012:27), insufficient pre-primary centres, and a lack of adequate play, teaching and learning materials (muthoni 2016). parents of children with severe and multiple disabilities are frequently more vulnerable to poverty and cannot afford assistive devices required for these children (odongo 2018:26). although enrolment in ece centres increased by 7% from 2015 to 2018, an annual decline of 19% followed in 2019 (masinde et al. 2022). the sector policy requires that the ministry of education develop and implement early identification, assessment and intervention standard procedures and guidelines for children with disabilities. the education assessment and resource centres (earcs) were operationalised in 1984 to provide early screening and intervention services for children with disabilities. however, they are often unable to implement functional assessments. a lack of functional assessment expertise and structure affects the performance of multidisciplinary teams tasked with the assessment of children with disabilities (emmy 2020). in some parts of the country, the ministry of health and the local county government do not formally work together in respect of earcs, for instance, only 15% of earcs utilise nutritionists and speech therapists (kise 2018). school admission policies do not require disability screening or assessments to be undertaken (muga 2003:33). integrated data management systems for the early identification of appropriate assessment, identification processes and the placement of children with disabilities in ece is lacking (abubakar et al. 2022). the responsibility for pre-primary education was devolved to county governments after the adoption of the 2010 constitution. thus, the oversight and management of pre-primary education is the responsibility of the county government (sections 18(a) and 18(k) basic education act 2013). county governments are responsible for independently budgeting and implementing ece (piper, merseth & ngaruiya 2018) and providing annual reports on educational progress to parliament (nthenge 2017). as a result, the provision of ece resources has been administered in the context of limited local funds for social sectors (koech 2003). kenya’s development blueprint of 2008, the kenya vision 2030, recognises the need to address the barriers that children with disabilities and their families face when accessing education. the kenya vision emphasises the need to ensure that children with disabilities have equal opportunities to access quality education, and that their ‘special needs’ are considered in the design and implementation of educational policies and programmes (sessional paper no. 10 of 2012). the 2010 constitution recognises the rights of children to compulsory and free basic education (art 53(1)(b)) and healthcare, and prohibits discrimination on the grounds of disability (article 54). article 54(b) grants persons with disabilities the right to access educational institutions and facilities, which are ‘integrated into society and are compatible with the interests of the person’. the persons with disabilities act of 2003 provides for the protection and promotion of the rights of persons with disabilities, including children, and guarantees the right to education for persons with disabilities on an equal basis with others (art 18). it emphasises the need for educational institutions to accommodate the needs of children with disabilities, providing them with necessary support services to ensure their equal access to education, and sets out the general legal framework and principles for promoting inclusive ece. the sector policy (ministry of education kenya 2018) further commits the government to full participation in ece, promoting inclusive education and advocating the right of children with disabilities to be enrolled in regular classrooms with their peers without disabilities. this shift to inclusive education also recognises the role of special learning institutions, special units in normal learning institutions and education, which is based at home to provide for children with severe disabilities. thus, kenya emphasises the need to specifically maintain special schools but is also trying to move towards inclusive education and a home setting where appropriate. this is a national policy where the local governments should align their ece programmes with these policy statements. the basic education act 14 of 2013 (the act) regulates the provision of general education throughout the country. aseka and kanter (2014) expressed concerns about the act’s focus on segregated education instead of inclusive education. the act was the first education law to explicitly refer to ece, including access for children with disabilities (nthenge 2017). the act provides for the establishment of special schools to provide special needs education at pre-primary, primary, and secondary school level (art 28). the children’s act of 2022, replacing the 2001 act, recognises and safeguards every child’s right to education and guarantees free compulsory basic education. this act states that children with disabilities have the right to be treated with dignity and have access to appropriate free medical treatment, care, education and training (art 20(1)). the early childhood education act (2021) establishes a framework for systems to administer ece in a county. this act contains specific provisions that obligate the county governments to identify and undertake an assessment of children with disabilities and to ensure that these children are not discriminated against or prevented from accessing and completing their attendance in ece. this national legislation now obligates each county to enact county-specific legislation and develop guidelines that will inform implementation of ece programmes. recently, legislators have been championing for a disability-specific law to be enacted to advance the rights of children with disabilities in education. the proposed learners with disabilities bill 2023 has been introduced in parliament and explicitly mandates the county governments to facilitate the identification and assessment of children with disabilities and creates a registry at the county level to provide for the screening and assessment of each child who may have a disability, even if they are not attending school (part iv). south africa the history of ece in sa dates back to the 19th century. however, under the apartheid government from 1948 to 1994 there was very little investment in ece, especially for black children (atmore 2013). restrictions on welfare subsidies for black children were imposed as a result of limits on parental income, while well-funded government preschools were available only in the white education system (nel 2007). thus, most black children had limited access to education and often relied on paid childcare centres within the community catering for children aged 3–6 years (rudolph, millei & alasuutari 2019). in 1994, the democratic government recognised, through the reconstruction and development programme (rdp), that children’s early experiences and learning have a significant impact on their future academic and personal success. this programme highlighted the need for comprehensive ece services, including health, nutrition, education, and social services. since then, several policies and initiatives have been introduced to promote ece. nutrition for preschool children apparently remains the responsibility of the department of health (richter et al. 2019). adequate nutrition for children with disabilities will require ensuring that children who fall through the cracks of the department of health’s surveillance are caught in the protective net of ece services under the responsibility of the department of education. the integrated nutrition programme (inp) and the school health programme (shp) support ece services. the inp was established in 1994 to tackle malnutrition and it incorporates various feeding initiatives such as the primary school nutrition programme (psnp), community programmes, and food parcels. as a multisectoral endeavour, the inp involves the departments of health, social development, and agriculture. during the coronavirus disease 2019 (covid-19) pandemic, the interruption of the inp had dire consequences for children’s health. however, litigation forced the department of education to roll out the inp without delay to school-going children (equal education and others v minister of basic education and others 2021 (1) sa 198 (gp)). the shp 2003 was implemented through collaboration between the departments of basic education and health with the support of other stakeholders and aims to support the holistic development of young children and to promote their health, well-being, and early learning. it is an integral component of the broader healthcare system, ensuring that children receive timely and appropriate health interventions that contribute to their holistic development. through collaboration with schools, parents, and healthcare professionals, this service strives to create a supportive and nurturing environment that fosters the well-being of the younger generation, setting the foundation for a healthier and more prosperous future (shung-king 2013:89). the programme identifies and addresses health issues, places a strong emphasis on education, prevention, and the creation of a supportive and nurturing school environment by ensuring the following: a health assessment, whereby children are screened for a number of health conditions such as vision and hearing health education and health promotion, age-appropriately tailored psychosocial and mental health assessments the identification and support of children with chronic health conditions facilitating the creation of safe and healthy school environments preventive interventions, mainly immunisations and deworming (the provision of sexual and reproductive preventive services at school is still under contestation) addressing minor ailments (shung-king 2013:89). the constitution, 1996, recognises the rights of all children to access basic education, healthcare and social protection, and prohibits discrimination on the grounds of disability (sections 27, 29, 28 and 9). the children’s act 38 of 2005 provides for the protection and promotion of the rights of children, including those with disabilities, and prohibits unfair discrimination on the basis of disability (sections 6(2)(d) and 11(b)). furthermore, the act requires that all children have access to ece services and provides for the regulation of established ece accessible to children with disabilities (sections 91–103). the legislation appears to envisage an ece system with ‘programmes’ being provided and funded through national and provincial strategies and with delegation to municipalities where relevant (sections 92–94). however, the legislation does not refer to ‘inclusive’ education. in relation to inclusive ece, the legislation specifies that ecd programmes should be ‘appropriate to the needs of the children to whom the programme is provided, including children with a disability, chronic illness and other special needs’ (section 94(3) of the children’s act). such wide and vague legislative instruction misses the target of inclusive education mandated by international law (fredman et al. 2022). the education white paper 5 on early childhood development (wpecd) (department of education, republic of south africa 2001) highlighted the link between ecd programmes and child well-being, school achievement, and cognitive and other developmental domains. however, while the policy addressed the inequity in the provision of ecd programmes and the fragmentary ecd legislative and policy framework, it has been criticised for not fully delivering on these commitments (storbeck & moodley 2011). the link between ecd services and child development was not reflected by meaningful change in how ecd services were provided (storbeck & moodley 2011). guidelines for educators to identify and support children who may have barriers to learning and development were provided to educators and emphasised the importance of early identification and intervention to prevent long-term negative impacts on children’s education (department of basic education policy on screening, identification, assessment and support 2014 [department of basic education 2014]). a comprehensive process of screening, identification, assessment and support is outlined, including the use of standardised tools and collaboration with parents and other professionals. however, apparently, many ecd centres are either not aware of the need to conduct assessments for disability or lack the necessary resources to do so (karisa et al. 2022). this finding is based on the results of an audit of ecd centres in 2014, which showed that assessments of children with disabilities are generally very low across all disability types (department of education’s national audit of ecd services [department of social development 2014]). the national ecd provisioning audit 2000 conducted by the department of basic education (dbe) to ascertain the status of ecd in the country, unsurprisingly had found that access to ecd was generally low and that in the 5–6 year age group, only 43% of children were accessing ecd. tellingly, the audit stated: while the findings of the audit established how few disabled learners are currently enrolled in ecd sites, little is known about these disabled learners. research focusing more specifically on learners with disabilities would allow for more responsive and appropriate provisioning. (department of education 2001:168) almost 15 years later, another audit by the department of social development (dsd) found that ecd centres generally tend to screen and assess the disabilities of children with particular disabilities such as ‘behavioural challenges’, developmental delays and ‘learning disabilities’. the authors of the 2014 audit posited that the fact that the number of children with such types of disabilities was higher than the number of children with other disabilities was largely because ecd centres were more knowledgeable about how to conduct assessments for these disabilities. more generally, the number of children with disabilities of various types obtained from the audit may not be reflective of the actual number of children with such disabilities because of the national lack of disability assessments carried out by ecd centres (dsd 2014:111). the audit found that it is likely that ‘there are children with undiagnosed disabilities, which implies that these children are not receiving the care they need’ (p. 113). the audit also noticed that because assessment of disabilities can be accessed independently from ecd centres, by implication the curriculum and care may ‘not [have] been tailored to meet the special needs of some children’ (p. 113). the dsd recommended training and awareness on disabilities or developmental delay to teachers and caregivers to enable early identification. concerningly, while the audit collected data on accessibility of infrastructure, it did not obtain data on potentially exclusionary admission requirements or on whether reasonable accommodations were offered to children with disabilities. the accessibility of ecd centres for children with disabilities paints a bleak picture, with suitable physically accessible toilets found at less than 50% of registered centres and only 17% of ecd centres with wheelchair ramps, and only 9% with handrails. some 63% of registered ecd centres reported that their classrooms were accessible to children with disabilities. however, a major flaw of the data was that special modifications were unlikely to be made to accommodate children with disabilities, presumably based on the ecd practitioners’ belief that their classrooms were accessible as there were no specific requirements for rating the classrooms’ accessibility (dsd 2014:222). in 2015, the national integrated early childhood development policy (niecd policy) aimed to promote comprehensive inclusive ece services. while the policy recognised the significance of early intervention and established screening and assessment programmes to identify children with disabilities, a lack of resources and support hindered the development of individualised education plans for children with disabilities (clark, naidoo & lilenstein 2019:2, 9). from 1996, the interim department of education policy for ecd recognised the complexity of ece and established a national ecd pilot project for implementing a universal reception year. it defined ecd as a comprehensive concept that encompasses the physical, mental, emotional, spiritual, moral and social growth and development of children from birth to at least 9 years of age. sadly, there is a paucity of information on the benefits of ecd interventions for children with disabilities and on the attendant costs relating to accessibility and appropriateness in the niecd (desmond et al. 2019:282). desmond et al. (2019) stressed the need to develop more effective and cost-effective models, such as non-centre-based approaches, and including home-visiting and playgroups. in 2020, the children’s amendment bill ([b 18b 2020] no. 43656) aimed to provide ece services for children with disabilities who were above school-going age until the year before these children entered school, and to provide an inclusive ece system. however, this bill was unsuccessful in dealing with the consequences of the transition of ece from the department of social development to basic education. those effects are staggering, with registration woes affecting the provision of services to these children (ally, parker & peacock 2021). the registration process for early learning centres in south africa is both time-consuming and expensive. according to the 2021 ecd census, a substantial 60% of these centres operate without official registration. this situation often arises not by choice but because of the intricate challenges involved in meeting the demanding norms and standards, which vary across municipalities and are further complicated by local by-laws. to attain compliance, early learning facilities must navigate a complex set of requirements, including obtaining land use and zoning certificates, securing a fire clearance certificate, undergoing environmental health inspections, and completing exhaustive application forms (innovation edge 2023). many schools have made repeated efforts to meet these criteria but find themselves consistently falling short. as a consequence, a considerable portion of their resources, already limited, is allocated to the registration process, presenting a significant setback for these centres and others in south africa facing financial constraints. this challenge underscores the urgent need for a more streamlined and accessible registration framework, considering the financial constraints faced by many early learning centres in the country (innovation edge 2023). the bill also failed to deal with the issues faced by unregistered and unsubsidised ecd centres lacking in resources. the bill’s proposal to change the peremptory nature of funding for poverty-stricken communities and children with disabilities from mandatory to discretionary serves to exclude these children from ece. venter (2022) identifies the devastating impact of family or community poverty on children in the ece phase. the mitigation of poverty is a cross-cutting obligation on many state departments and the provincial and local government budgeting for these groups of children should be an urgent priority. the children’s amendment act of 2022 commenced in january 2023. however, the bill’s draft provisions on ece were abandoned during 2021. the sa law reform commission (salrc) seeks to domesticate the crpd by either the enactment of a disability-specific act or by the amendment of the promotion of equality and prohibition of unfair discrimination act of 2000 (pepuda), which prohibits unfair discrimination against persons with disabilities (salrc 2020). the current anti-discrimination provisions in pepuda have been successfully used by children with physical disabilities (seeking reasonable accommodations and accessibility in private schools and shops open to members of the public) (oortman v st thomas aquinas private school case 1/2010 witbank equality court (unreported) (holness & rule 2014); haskin v khan (eqc) unreported case number 03/19 mitchell’s plain 2020, discussed in holness (2022). surprisingly, however, the equality courts have not yet received a complaint of discriminatory admission, a lack of accessibility, and a lack of reasonable accommodations by a parent or a child with a disability in the ece phase. it seems that the domestication process is not prioritising legislative protection for inclusive ece. furthermore, there is widespread misunderstanding and underappreciation of the need to offer ece to children, not just in the reception years, but from infancy: policy and law reform needs to prioritise children from birth (richter et al. 2019). the white paper on the rights of persons with disabilities (wprpd) highlights six areas that need attention to assist persons with disabilities, with a focus on ecd. it recommends that children with disabilities must have access to ecd programmes and facilities. the wprpd further highlights the importance of addressing ecd as a foundational element in the broader strategy to empower and support persons with disabilities, ensuring that they have equal opportunities for growth, learning, and development from the very beginning of their lives (department of social development 2016). are the south african and kenyan governments only mandated to implement inclusive early childhood education progressively and depending on the availability of resources? inclusive education is often misunderstood as very costly and impractical, but inclusive models of education are less expensive than segregated ones (un-desa, ohchr & ipu 2007). inclusive school settings may in fact reduce expenses in comparison to special schools (halvorsen 1996 cited in mezzanotte 2022; odom, parrish & hikido 2001). the broad scope of inclusive education requires a comprehensive and intersectoral commitment that cuts across government (general comment 4 on article 24 of the crpd (2016 para 61)). both sa and kenya are committed to intersectoral collaboration on ece (kenya’s sector policy 2018 para 4.12 and sa’s ecd paras 7.2, 7.3.3.5). however, the implementation is frequently hampered by overlapping mandates, buck-passing, and a failure to prioritise budgets (hudson, hunter & peckham 2019:6). there is a widely held premise that these policies on ece, particularly for children with disabilities can only be gradually implemented, depending on the reasonable availability of adequate funding. ostensibly, both governments rely on this premise to justify non-compliance with state obligations and as an excuse not to act expeditiously. on the contrary, all children urgently need and should have an immediate right to inclusive ece (vargas-baron et al. 2019). neuroscience has established the nature of early brain development and the need to support parents and caregivers to ensure that all children fulfil their potential (black et al. 2017). arguments based on the premise that only progressive realisation of this right is required should not allow governments to delay or renege on the obligations of state parties to move towards expeditious implementation of inclusive ece (chenwi 2013:744). in kenya, immediate equitable budgetary allocation is needed with continual review by the minister of education in the sector policy (ministry of education kenya 2018:30). in the 2022–2023 budget, the government allocated ksh. 544.05 billion to education – 16.36% of the national budget and 4.30% of gdp (human rights-based analysis of kenya’s budget 2022/23, ohchr, nairobi). although the national budget allocation to the education sector is within international agreed benchmarks or slightly below the dakar commitment on education for all by the african union, it is difficult to clearly determine what is budgeted for ece. this is because at the national level, the ece budget is merged with that of primary education. the responsibility to deliver quality ece is devolved to the counties. the national government allocates resources for pre-primary programmes with the counties deciding how to spend the funds. this results in variation in the standards and implementation of ece policy across the different counties and general underfunding. furthermore, capital expenditure items including physical infrastructure are prioritised and the expenditure involved in training of staff and quality assurance is overlooked. the immediacy of the right to education is recognised in the sa constitution (section 29(1)(a)), which provides that everyone has the right to a basic education. the constitutional court confirmed that the right to basic education is not subject to progressive realisation and instead is immediately realisable without internal limitation (governing body of the juma musjid primary school & others v essay n.o. and others 2011 (7) bclr 651 (cc)). such a limitation on other socio-economic rights usually merely requires that those rights are progressively realised within available resources or subject to reasonable legislative measures. the right to a basic education in section 29(1)(a) may only be limited by a general law that is ‘reasonable and justifiable in an open and democratic society based on human dignity, equality and freedom’ (section 36 of the constitution). furthermore, the constitutional court has adopted a contextual method of interpretation in this regard by understanding rights in their social and historical context (government of the republic of sa v grootboom 2001 1 sa 46 (cc) para 25). a contextual interpretation of the right to basic education should prioritise the provision of free basic education to disadvantaged children, in particular inclusive ece (arendse 2011; fredman et al. 2022). both governments are thus obliged to make education immediately available, accessible, acceptable and adaptable for all children (the 4-a scheme) (see committee of the crpd’s concluding observations on various countries, as cited in fredman et al. 2022). the constitutional right to basic education creates a positive right that basic education be provided for every person, not merely a negative right that persons should not be prevented in pursuing their basic education (ex parte gauteng provincial legislature: in re dispute concerning the constitutionality of certain provisions of the gauteng school education bill of 1995 (1996 (3) sa 165 (cc) para 9). therefore, the state is obliged to take positive steps to ensure that basic education is provided. thus, the right to basic education is not merely a right of access and is not subject to internal qualifiers (see section 29(1)(b)). section 29(1)(a) differs from the right to further education, which is ‘qualified’ to the extent that ‘[t]he state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation’ of this right. the right to ece, falling under the right to basic education it is submitted, cannot be limited as a right to access or be subjected to internal qualifiers. the civil society initiative, real reform for ecd, exposed some of the registration barriers and continues to seek solutions at local government level for better budgetary allocation to the sector (mantjé 2022), but it excludes provision for children with disabilities. despite the sa government’s intentions to provide quality ece for all children in sa, articulated in its national intergrated early childhood development (niecd) policy, the realisation of this goal has been limited and educational reform has stagnated with little will to prioritise ece for children with disabilities, as indicated in the sa children’s amendment bill (holness et al. 2023). in the kenyan case of john kabui mwai & 3 others v kenya national examination council & 2 others [2011] eklr. 220j, the court recognised that realising socio-economic rights entails achieving improved conditions for the poor and less advantaged members of society. however, the government failed to provide evidence of concrete policy measures, genuine commitment, guidelines, and tangible progress towards achieving the right to education, and progressive realisation is not an indefinite defence (michael mutinda mutemi v permanent secretary, ministry of education & ors [2013] eklr, petition no. 133 of 2013). neither sa nor kenya prioritise ece sufficiently (neuman & powers 2021), and children with disabilities are even less of a priority (almasri et al. 2023). countries with compulsory and free ece, such as peru and ghana, have greatly increased children’s access to ece for children with disabilities (neuman & powers 2021). despite international pressure on states to prioritise ece, some countries reflect ‘a lack of sustained follow-through, resource provision’ and a general failure to turn advocacy into donor or government financed investments (neuman & powers 2021). choices in governance of ece systems would ensure quality in service-provision, affordability, promotion of cost-effectiveness of the preferred interventions, and achievement of equity and access (kagan & cohen 2005). effective governance can promote coherence in policymaking and meet the diverse needs of children and families across disparate geographical areas and socio-economic statuses. are children with severe and profound disabilities ‘ineducable’? some children with disabilities, particularly those with more severe disabilities such as developmental (e.g. autism) or intellectual disabilities, in ece and later in compulsory schooling ages, have been labelled as ‘ineducable’ (special rapporteur on the rights of persons with disabilities 2017). the special rapporteur has acknowledged the prevailing myth of ineducability. the special rapporteur has stressed that the state obligation to ensure that support is provided to persons with disabilities in the educational context is: [n]ot a single transversal obligation established in the [crpd], but also a requirement that derives from the basic principles of human rights, such as dignity, universality, individual autonomy, equality and non-discrimination, participation and inclusion. (p. 1) despite these comments of the special rapporteur, the south african state has sought to argue that children with severe and profound intellectual disabilities should not qualify for admission to special schools, that no amount of education benefit them or be of value to them (western cape forum for intellectual disability v government of the republic of sa and another (2011 (5) sa 87 (wcc) paras 3.9 and 17). in this case, the court found that the state has a duty to provide equally for the education of all children which include children with severe and profound disabilities. the state had tried to rely on the progressive implementation of its policy as a defence to immediate provision of education to children with severe and profound intellectual disabilities (paras 3.9 and 17). this defence would have served to totally exclude from accessing educational facilities for many generations (ngwena & pretorius 2012). the high court found that the only education available in the western cape province for such children was at special care centres run by ngos (para 3.4). the court laudably (ngwena & pretorius 2012) admonished the state for declaring that these children were ‘ineducable’ and held that the provision by the state for such children was significantly less than that provided for other children; was inadequate for their educational needs; and was made available only where an ngo and not the government provided such facilities. this lack of governmental provision for inclusive ece violates ‘the rights of these children to education, equality, human dignity and protection from neglect and degradation’ (para 4 of the judgment). relying extensively on international and constitutional law, the court concluded that the state had breached these children’s rights to a basic education (paras 6–27) and their constitutional right to equality (paras 27–44). the court ordered that the staff of such special care centres should receive ‘proper accreditation, training and remuneration’ and the state was ordered to show what steps they had taken to give effect to this order (para 45). delays in enforcement of the order have, however, been noticed (wood et al. 2018). accordingly, government implementation of the court order appears to pay lip service to the identification of such breaches and the need to act, with a sense of urgency, to remedy them. blanket bans or exclusions therefore cannot be countenanced, particularly in the ece sector, and are based on fallacious and misguided beliefs. in the kenyan context, the belief exists that children with ‘severe’ disabilities are ‘ineducable or that their management in regular education settings strains the scarce financial resources’ (chomba et al. 2014). families and educational institutions argue that providing education and support to children with severe disabilities requires significant resources (who 2012:25). community stigma against children with disabilities may mean they suffer exclusion, ostracisation and are sometimes ‘locked’ up or hidden (hirpa da 2021:5). this persistent stigmatisation also affects the access to ece and food supplementation programmes (zuurmond et al. 2016). notably, there is no explicit ‘zero reject’ requirement in kenyan law regarding inclusion, which means that schools have the discretion to refuse admission to a child deemed ineducable, so potentially discouraging parents from seeking assessments and other special education services, which then disadvantages the children (odongo 2018). do states only have a ‘regulatory’ duty in relation to early childhood education? governmental accountability is frequently scuppered by its stance that its duty is merely to regulate the provision of ece provided by private stakeholders, usually in ece centres, and excluding other types of ece provision such as home-based care (clark & holness 2022). the reliance on this false notion of accountability sidesteps the fact that the rights to health and education are cross-cutting obligations for states, in particular where families cannot provide for their children, to which the pervasive poverty and inequality gaps in both kenya and sa attest. the diagnostic ecd review (richter et al. 2012) found that important gaps existed in the area of: [s]upport for parenting, prevention of stunting among young children, safe and affordable child care for very young children and other families needing assistance, and planned rapid expansion early child care and education and provision of services to the most at-need families, including children with disabilities. (p. 1) the sa niecd policy has been welcomed for its emphasis ‘on interventions and support during pregnancy and the first two years’ (röhrs et al. 2016:14). the policy adopts a phased-in approach to implementation, which will need financial investment (desmond, richter & martin 2016). röhrs et al. (2016:14) observed that the policy does not give maximum support to the invaluable role of ngos in ece through knowledge and expertise, resources and service delivery. this policy continues to promote the notion that ece is ‘about centre-based policy … for children 3–5 years of age despite the comprehensive nature of the integrated policy (shung-king et al. 2019:72). rudolph et al. (2019) notice that the state’s technocratic approach to using data practices when prioritising solutions for ece does not facilitate the required social change. in order to establish a functional system for delivering ece services, proper allocation of resources through sufficient provision of financing, human resources, infrastructure, materials, and support services is necessary (section 98 of the children’s act, berry, dawes & biersteker 2013). the availability of subsidies for ece centres is contingent upon their registration, and yet becoming registered requires meeting minimum requirements outlined in the children’s act (richter et al. 2012; thorogood et al. 2020). it has been argued that these requirements, along with the necessary norms and standards, pose significant challenges for many centres, in particular those in impoverished and rural communities (thorogood et al. 2020). by imposing stringent registration requirements, the government inadvertently exacerbates the inequities in ece service delivery, as the lack of registration hampers access to vital subsidies, thus impeding provision of quality ece. expanding the scope and coverage of subsidies for ece is essential to broaden and enhance accessibility (wills & kika-mistry 2021). early childhood development conditional grants were implemented in 2001–2002 to extend ece services. the conditional grant is for infrastructure and maintenance and supports additional funding for ece subsidies (wills & kika-mistry 2021). conditional grants aim to assist ecd centres not fully funded from equitable share, conditionally registered centres and non-centre-based ece programmes. the allocation is r17.00 per child for 264 days, while for non-centre programmes it is r6.00 per child per session (parliamentary monitoring group 2022). in 2022, a ‘real-term decline’ of medium-term funding allocation for ece was identified because, despite the increase in ece conditional grants, the below inflationary impact translated into a decrease of 2.8% by 2024–2025 (section27 2022). this decrease over time means that indigent children will be especially affected by this and by the proposed spending on infrastructure for low-cost ecd centres and maintenance of existing centres (section27 2022). in 2023, the ece grant allocation was increased, but ece access for 1.3 million children aged 3–5 years who are currently excluded from ece was not necessarily secured (metelercamp 2023). this grant increase might not have been substantial enough to ensure enrolment for all children in this age group (metelercamp 2023). in addition, the grant for learners with profound intellectual disabilities was reduced and under-spent (metelercamp 2023). this raises questions about the transparency and clarity in the allocation process. on the one hand, there is an absence of data in the ece grant increase. there is also a concerning reduction and under-spending of the grant for learners with profound intellectual disabilities. these issues underscore the need for clarity and thorough examination of both inclusionary aspects and the allocation and utilisation of specific grants, as indicated by the parliamentary budget office in 2021, which highlighted that there was under-provisioning for learning and support materials (parliamentary budget office, 2021). furthermore, the wprpwd (2016:6.4.1.6) recognises that children with disabilities require a range of disability-specific support such as screening, early identification and assessment to determine individualised support programmes, language and communication development, assistive devices, and technology and therapy. the policy further mandates the development of a national integrated referral and tracking system with the strategy and framework for disability and rehabilitation (philpott 2018). kamga (2016) stated that, although the wprpd is valuable, its implementation requires effective monitoring. an example of policy and regulatory misunderstanding of the sa state obligation towards children with disabilities was found in the exclusion from resumption of schooling during the covid-19 pandemic. the state’s irrational decision-making in relation to the provisioning for children with disabilities during the humanitarian crisis has been heavily criticised (kamga 2021). the dbe was criticised for irrational delays and exclusions of some children with disabilities from returning to school after the hard lockdowns ended and it had to amend their regulations to ensure equitable return to school (centre for child law v minister of basic education high court of pretoria, case no 3123/2020 (unreported), kamga 2021). the phased return to school regulations only provided for autistic, deaf, hard of hearing, blind and partially sighted children, but not for those with physical disabilities, intellectual disabilities, epilepsy and severe to profound intellectual disabilities. the court order indicates that the state cannot renege on its obligations on infrastructural and accessibility requirements, even at a time of a humanitarian crisis. two further sa cases brought during the pandemic illustrated governmental recalcitrance and perhaps an inadequate sense of urgency shown towards children in ece. the first case, skole-ondersteuning sentrum npc and others v minister of social development and others related to continued indefinite and blanket closure of ecd programmes once hard lockdown regulations were lifted (paras 14–17, 30). the court declared that all private ecd centres were entitled to reopen immediately (para 51 read with para 1). the second case rested on the ability of ecd centres to remain open in the face of withheld or late payment of government subsidies to the centres in sa childcare (pty) ltd & others v minister of social development & others. in that case, the court ordered government to pay subsidies to qualifying ecd providers (ally, parker & peacock 2022). later, an appeal was less successful in minister of social development v sa childcare (pty) ltd & others [2022] zasca 119 (29 august 2022) (unreported), where the court found insufficient evidence of continual breaches of constitutional obligations to the concerned ecd centres. these cases did not interpret the legislation or policies relating to ece because the cases emanated from challenges to the disaster management act. the state’s interpretation of its duty as merely regulatory was clearly evidenced in these cases. it is hoped that the prioritisation of funding for infrastructure in the ece sector, as per the current children’s act, will be more strongly enforced. the dbe has been forced through litigation to ensure that its regulations on norms and standards in schools are compliant with the constitution (equal education and another v minister of basic education and others 2019 (1) sa 421 (ecb para 44)). similarly, infrastructural regulations to promote accessibility and inclusive ece of children with disabilities will need to have stipulated timeframes for implementation, and require inter-governmental cooperation in relation to resource allocation and responsibilities. ultimately, the sa state has effectively contracted out of providing ece as a state service through its subsidisation policy. the ece stimulus package, rolled out during the pandemic when the closure of the sector created havoc for children and families across the nation, is an example of the state starting to take ece provision seriously. however, that roll-out was not without problems (gontsana 2021). local governments in sa and counties in kenya are key implementers of policy and legislation, although county regulation of ece in kenya is mired in obstacles (mantjé 2022). the implementation of minimum standards on universal access for children with disabilities at ecd centres operated by ngos (which are not the same standards applicable to the public sector under the national building regulations) is both ‘wide-ranging and costly’ (project preparation trust 2019:80). however, ecd facility design should provide for children with all disabilities, including behavioural, autistic, and intellectual disabilities requiring accommodations and accessibility to be promoted for their sensory integration (project preparation trust 2019:80). some ecd centres have been forced to allow the continued attendance of children up to 8 years old without an alternative educational option available to them (project preparation trust 2019). although the role of local government in relation to ece is ostensibly limited to health and safety checks, peacock (2023) argues that the absence of a coherent strategy and legislation on local government duties on ece, including its building and upgrading of facilities, is legally suspect. peacock proposes amendments to the municipal systems act and children’s act to address the gap in explicitly allocated ece local government powers. conclusion although both governments have made some efforts to promote the rights of children with disabilities at the ecd level, wide disparities exist between legislation and policies and their implementation. kenya’s resource and infrastructure barriers hinder the provision of quality inclusive ece. however, perhaps the greatest difference between kenya and sa is that the crc and crpd were directly imported and domesticated through article 2(6)13 of the kenyan 2010 constitution. by contrast, sa’s ratification of instruments such as the crc and the crpd still requires domestication (sucker 2013). thus, there may be more traction for accessibility and reasonable accommodation to be included in legislation and policy in kenya, with a slower uptake in sa. as a result, kenya displays a greater degree of political will than sa to implement inclusive ece, although ece centres in public primary schools continue to be unregistered with little or no data on their management (ministry of education kenya 2018:1). unfortunately, a continued lack of data on inclusive ece translates into inadequate financing as the information vacuums are also relied on by the state to renege on its obligations. the under-prioritisation of early intervention, screening and assessment initiates the continued neglect of inclusive ece into school level. both governments have neglected adequate data capturing systems (bekink 2022) and effective monitoring and evaluation (griffin 2018). south africa continues to neglect inclusive ece law and policy reform. while kenya’s reforms acknowledge the right to inclusive ece, their inadequate implementation is at times aimed at political point-scoring without addressing persistent systemic challenges. this article further illustrates that some of the premises relied on by the sa and kenyan governments, which have contributed to the slow implementation of government policy and legislation in this area. south africa fails to expeditiously implement ece legislation and policy and needs to learn from kenya’s more urgent prioritisation of inclusive ece. however, the lack of adequate budgeting, financing and monitoring of inclusive ece in both countries is evidence of a breach of the states’ international law obligations for which they should be held accountable. while accountability mechanisms are in place for both governments, these are underutilised. the utilisation of reporting and complaint mechanisms to the treaty monitoring bodies may, in part, hold the states accountable. still, these mechanisms have been stalled by the mistaken premises outlined in this article, which both states have used to argue their case when challenged on their poor provision and implementation of inclusive ece. acknowledgements competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions authors 1 and 2 were responsible for the implementation and supervision of the project. author 4 provided the comparative law perspective from kenya, and author 3 did research and referencing. ethical considerations ethical clearance to conduct this study was obtained from the university of kwazulu-natal research ethics committee, university of kwazulu-natal (0021438). funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s results, findings, and content. references abubakar, a., gona, j.k., kipkemoi, p., rimba, k., amukambwa, d. & newton, c.r.j.c., 2022, 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http://dx.doi.org/10.4102/ajod.v4i1.171 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. exploring the impact of wheelchair design on user function in a rural south african setting in this original research... open access • abstract • introduction • methodology    • study design    • study setting    • objective one: impact of wheelchair design on user function       • study population and sampling       • measuring instruments       • data collection • data analysis    • objective two: variables that guided wheelchair prescription       • study population and sampling       • data collection tool       • data collection • data analysis    • rigor       • ethical considerations • results    • impact of wheelchair design on user function    • variables that guided wheelchair prescription • lack of funding • inappropriate prescription       • insufficient skills       • sub optimal assessment       • wheelchairs available on tender do not meet all user needs       • user choice • discussion    • limitations    • recommendations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references • footnotes abstract top ↑ background: wheelchairs provide mobility that can enhance function and community integration. function in a wheelchair is influenced by wheelchair design. objectives: to explore the impact of wheelchair design on user function and the variables that guided wheelchair prescription in the study setting. method: a mixed-method, descriptive design using convenience sampling was implemented. quantitative data were collected from 30 wheelchair users using the functioning every day with a wheelchair scale and a wheelchair specification checklist. qualitative data were collected from ten therapists who prescribed wheelchairs to these users, through interviews. the kruskal-wallis test was used to identify relationships, and content analysis was undertaken to identify emerging themes in qualitative data. results: wheelchairs with urban designs were issued to 25 (83%) participants. wheelchair size, fit, support and functional features created challenges concerning transport, operating the wheelchair, performing personal tasks, and indoor and outdoor mobility. users using wheelchairs designed for use in semi-rural environments achieved significantly better scores regarding the appropriateness of the prescribed wheelchair than those using wheelchairs designed for urban use (p = <0.01). therapists prescribed the basic, four-wheel folding frame design most often because of a lack of funding, lack of assessment, lack of skills and user choice. conclusion: issuing urban type wheelchairs to users living in rural settings might have a negative effect on users’ functional outcomes. comprehensive assessments, further training and research, on long term cost and quality of life implications, regarding provision of a suitable wheelchair versus a cheaper less suitable option is recommended. introduction top ↑ a wheelchair is defined by the who (2008:11) as ‘a device providing wheeled mobility and seating support for a person with difficulty in walking or moving about’. thus, the purpose of a wheelchair is to improve personal mobility. with enhanced mobility comes the opportunity for greater function, access to services, community integration and employment (who 2008). however, function and community access is influenced by variables like the user's functional abilities, the environment and wheelchair design (scherer 2002; routhier et al. 2003; vegter et al. 2010; øderud 2014). part of the focus of this article is on the impact of wheelchair design on user function. wheelchair design features, such as the overall length, weight, frame type and width, seat configuration, wheel and castor type, arm and footrests, axle position and propulsion mechanism, influence function (vegter et al. 2010). there are five different categories of wheelchairs available on the south african national wheelchair tender, for prescription to users dependent on government health care services, (south african national treasury 2010). the different design features of the five categories of wheelchairs and their impact on function are summarised in table 1. table 1: features of the different categories of wheelchair available on national tender. design features must be matched to the user`s functional ability and posture support needs, and also to the environmental and durability requirements. achieving an ideal match between user, wheelchair design and environment might be as difficult as it is important (di marco, russel & masters 2003). information from the wheelchair database of the western region of the eastern cape province (wrec) indicated that wheelchairs most suitable for indoor use and in flat outdoor environments (as are mostly found in urban areas) were mainly issued in this predominantly rural area. the reasons for this practice and its impact on user function are unknown. thus, the objectives of the current study were to determine: what the impact of wheelchair design was on user function and what variables guided wheelchair prescription in this setting? methodology top ↑ study design a descriptive, mixed-method design was used (kroll, neri & miller 2005). in the first phase of the study quantitative data were collected from wheelchair users to determine the type of wheelchair they received and their functional abilities in the wheelchair. in the second phase quantitative and qualitative data were collected, from physiotherapists and occupational therapists who prescribed these wheelchairs, to determine the factors that influence the type of wheelchair design they prescribe. study setting this study was performed in the wrec of south africa. this region is similar to the rest of the eastern cape province. geographically it is a mountainous, hilly grassland environment, criss-crossed by rivers with muddy or sandy areas, depending on the season. the road infrastructure is poorly maintained and public transport is limited. informal settlements are found throughout the region, with the majority of settlements in rural or semi-rural areas. many people live in small ‘rondavel-type’ structures. sanitary facilities and water is often shared and provided at strategic points in these settlements. objective one: impact of wheelchair design on user function study population and sampling the 231 adults who lived in the wrec, and received a wheelchair from the eastern cape department of health (ecdoh) between 01 june 2010 and 30 june 2012, formed the study population. from this database 15 wheelchair users from rural areas and 15 from semi-rural areas were conveniently selected and invited to participate in the study. users had to be 18 years or older for inclusion in the study, and needed to have had a government subsidised wheelchair for at least 3 months. those with hired, loaned or privately financed wheelchairs were excluded. measuring instruments the functioning everyday with a wheelchair (few) scale (mills, holm & schmeler 2007) and a wheelchair specification checklist (wsc) were used for data collection to address objective one. the few scale consists of three parts: functioning everyday with a wheelchair (few/fma questionnaire) functioning everyday with a wheelchair-capacity (few-c) functioning everyday with a wheelchair-performance (few-p). the findings presented in this article focus on results from the few/fma, which focuses on functional abilities and is completed by wheelchair users. it consists of 10 self-report items which are scored using a 6-point scale from 6 = completely agree to 1 = completely disagree. the wsc consisted of two sections: section a collates demographic data such as: diagnosis the period the user has been using the current wheelchair the occurrence of secondary complications like pressure ulcers. section b is a five category checklist to establish whether or not the prescribed wheelchair was appropriate. the categories are: size environment postural support function biomechanics. the wsc was developed from the provincial government of the western cape's standards for wheelchair prescription (pgwc doh 2009a). the checklist was peer-reviewed by a seating specialist1 to ensure content validity. each category was scored on a 3-point scale. a score of ‘1’ meant the wheelchair was not suitable. a score of ‘2’ meant that the wheelchair was partially suitable or neutral to the needs of the user, and a score of ‘3’ meant the wheelchair was suitable. data collection participant's details were obtained from the wrec wheelchair database. participants were contacted telephonically until 15 living in rural areas and 15 living in semi-rural areas consented to participate in the study. an appointment for data collection, at a venue of their choice, was made. on meeting the participants the study was explained to them, their questions were answered and written informed consent was obtained. participants were asked to complete section a of the wsc and the few/fma questionnaire. thereafter section b of the wsc was administered. questions were translated into isixhosa by a translator where necessary. data analysis top ↑ quantitative data were analysed in consultation with a statistician from the centre for statistical consultation (csc) at stellenbosch university (su). relationships between variables were tested with the kruskal-wallis test. a p-value of less than 0.05 was deemed statistically significant. objective two: variables that guided wheelchair prescription study population and sampling the 14 therapists who issued wheelchairs to the users who participated in phase 1 of the study formed the study population for the second phase of the study. two could not be identified as there was no signature on the requisition form. a further two were unreachable (one had emigrated and another did not return calls despite several attempts). the remaining ten therapists were contacted telephonically and all consented to participation. data collection tool a self-compiled questionnaire, with open and close ended questions, was used to collect data from therapists. the questions focused on the therapists’ knowledge of wheelchairs available on tender and their perceptions of wheelchair prescription practice in the study setting. of the ten therapists, nine had completed a basic wheelchair seating course and four had completed both a basic and an intermediate wheelchair seating course. these courses are based on the who guidelines for wheelchair provision in less resourced settings (who 2008; pgwc doh 2009a, 2009b). data collection data were collected from the therapists through semi-structured interviews in english or afrikaans, depending on the preference of the individual therapist. interviews with therapists were electronically recorded and transcribed by an external scribe. data analysis top ↑ content analysis was used to identify emerging themes from the transcribed data. the different themes were highlighted in different colours, e.g. all text in the transcripts related to funding challenges was highlighted in green and coded as ‘funding’ (hsieh & shannon 2005). a second rater identified themes independently and these were compared to the themes identified by the second author. information from quantitative open-ended questions was summarised on a spreadsheet. rigor to add to the rigor of the data, triangulation of measuring instruments was done, e.g. function was determined by the fma and wsc. all data were collected by one researcher. generalisability of findings is negatively impacted by the small sample size, convenient sampling method and including only users with access to a telephone. ethical considerations the study was registered with the committee for human research at the faculty of health sciences, stellenbosch university (ethics approval number: s12/08/231). in addition permission to perform the study was obtained from the eastern cape department of health and relevant institutional heads. participation in the study was voluntary. written informed consent was obtained from each participant. all information was treated as confidential. results top ↑ impact of wheelchair design on user function of the 30 wheelchair users, six (20%) were female and 24 (80%) male. their mean age was 43.4 years, with a minimum age of 19 and a maximum age of 82 years. the most common diagnosis was complete or incomplete spinal cord injury (47%), followed by lower limb amputation (23%). as indicated in table 2, 25 (83%) participants received a wheelchair more suitable for use in an urban environment and five (17%) received wheelchairs more suitable for use in ‘semi-rural’ environments. table 2: the type of wheelchair issued to participants (n = 30) table 3 shows that the size, fit, support and functional features of the wheelchair created transport challenges for 19 users. thirteen (43%) wheelchair users had to hire private cars for transport. according to them taxi drivers (taxis in the setting are mainly minibus vehicles) refused to provide transport to wheelchair users, because it took much longer for a wheelchair user to transfer into the taxi and load their wheelchair than for an able-bodied client to embark. the loss of time has financial implications for the taxi owner. when asked about using a bus, users reported that they need help to embark and disembark as these vehicles are too high for independent transfers. thus, someone had to accompany them. table 3: ability to perform functional tasks in the wheelchair according to fma scores. ten or more users experienced challenges in the categories of daily routine, operating the wheelchair, performing tasks at different surface heights, performing personal tasks, indoor mobility and outdoor mobility. as indicated in figure 1, the type of wheelchair did not significantly impact fma scores. the atw® had the widest range of scores with most users scoring low in the transport section and high in the outdoor mobility section. the cruiser® with basic, four-wheel, folding frame design had the lowest mean score and scored particularly low with regard to outdoor mobility, whilst the econorigid® (four-wheel, rigid frame design with adjustable settings and fold-down backrest) had the highest mean score. figure 1: impact of category of wheelchair on function (kruskal-wallis; p = 0.27) according to scores from the wsc five wheelchairs (all cruisers®) were not suited to the environment of the user whilst eight (4x cruisers®, 2x econorigids® and 2x roughriders®) were suitable, and 17 suited the environment partially. function was hampered for eight users all using cruisers®, as shown in figure 2, and facilitated for 12 users of whom seven used econorigid® wheelchairs. figure 2: impact of type of wheelchair on function as determined by the wheelchair specification checklist. when assessing function during completion of the wsc it was found that more than half (57%) of the participants were unable to propel the wheelchair on even terrain, up and down an incline, or manoeuvre up and down a curb. figure 3 shows that users using wheelchairs designed for use in semi-rural environments achieved significantly better wsc scores than users using wheelchairs designed for urban use (kruskal-wallis; p = <0.01). figure 3: comparison between wheelchair specification checklist scores and wheelchair design (kruskal-wallis; p = <0.01) variables that guided wheelchair prescription all ten therapists who participated in the study indicated that they prescribed the basic four-wheel folding frame design (cruiser®) most often. according to emerging themes this practice could mainly be ascribed to a lack of funding. other factors that played a role included insufficient knowledge and skills, sub optimal assessments, inappropriate prescription, no design available on national tender that met all the needs of users, and user choice. lack of funding top ↑ a lack of funding resulted in therapists prescribing cheaper designs, even if less appropriate than others, to increase their ability to provide more users with wheelchairs: ‘it's a moral dilemma – something is better than nothing, so you end up issuing what you have available instead of what is most appropriate.’ (participant 8) ‘the restricted budget is a massive problem. a letter of concern was submitted through the region's wheelchair advisory committee to the rehabilitation manager last year about this. no reply yet. we submit statistics on wheelchair orders every week to the ceo of our hospital, so that they are aware of the waiting list.’ (participant 9) ‘i always think of the price before i order a wheelchair due to the budget constraints. i think before i order a specified wheelchair if it's not life changing, because those wheelchairs (wheelchairs with designs for semi-rural and rural use) are more difficult to recycle (re-issue to another user in the event of the first user passing away).’ (participant 5) insufficient funding caused waiting periods in excess of 18 months: ‘patients don’t get a wheelchair at the time of prescription, and two years later they probably need something completely different.’ (participant 2) ‘by the time you receive the wheelchair and issue it the prescription isn’t accurate anymore because the patient and their circumstances have changed.’ (participant 6) inappropriate prescription top ↑ lack of funding seems to cause inappropriate prescription that negatively impacted posture, function and wheelchair durability: ‘poor funding for wheelchairs makes it impossible to issue the correct wheelchair at the appropriate time because there is such a long waiting list.’ (participant 3) ‘in 2010 there was a gunshot wound patient who was put into a recliner wheelchair because it was all that was available. i saw how bad the wheelchair was for his posture and for his health. it was shocking.’ (participant 2) ‘it's always so sad to see young or active clients going home in cruisers because it's the only wheelchair that is available at that time, sometimes it's not even the right size!’ (participant 10) ‘seeing cruisers (basic four-wheel folding frame wheelchair) being returned or brought in for repairs and realising that they are not good enough for the harsh environments clients live in.’ (participant 1) ‘wrong prescriptions by other therapists and then i had to issue the wheelchair, and i knew the patient was going to be stuck with that wheelchair. i couldn’t just order them something more appropriate because the budget doesn’t allow that.’ (participant 8) insufficient skills some of the participants considered that lack of training and, therefore, a lack of appropriate skills amongst prescribing therapists caused problems to prescribing the most appropriate wheelchair design: ‘yes, cruisers (basic four-wheel folding frame wheelchair) are being ordered too often. it's a habit we have gotten into because we don’t know other wheelchairs, especially the newly qualified staff – their experience start with cruisers and then they get stuck.’ (participant 4) ‘not enough product training from suppliers.’ (participant 10) sub optimal assessment therapists reported, upon doing a home visit after issuing a wheelchair, that the wheelchair they had prescribed was completely inappropriate for the recipient: ‘i did a home visit and saw that the 20’ wheelchair couldn’t get into the bathroom or fit through the doorframe.’ (participant 5) ‘(i) issued a wheelchair to a tetraplegic patient, and when i did a home visit (i saw) the patient couldn’t move around inside his house with this big wheelchair because the house was too small.’ (participant 7) two (7%) of the users reported having had a home visit from a therapist or other medical professional. therapists ascribed the lack of home visits to a shortage of transport and staff shortages. wheelchairs available on tender do not meet all user needs therapists felt that the wheelchairs currently available on tender do not necessarily meet all the needs of the wheelchair users: ‘…[they are] restricted to one wheelchair per client and one wheelchair can’t be appropriate to all areas of the client's life.’ (participant 3) ‘if you issue a rural wheelchair to the patient their house is too small for it and transport is a big problem.’ (participant 2) ‘the wheelchairs on tender are good, but environment where the patient lives makes it very difficult to select a wheelchair.’ (participant 8) ‘the patient is very restricted in terms of transport – they want a folding wheelchair.’ (participant 10) user choice ‘[i] might feel atw/other wheelchair is more appropriate but the client or the family want the cruiser … had a t12 spinal cord injury patient who was in a cruiser and refused any other wheelchair.’ (participant 8) ‘access is a big problem and therefore patients often don’t want anything but a standard cruiser.’ (participant 8) discussion top ↑ whilst the majority of users perceived themselves to be capable of performing all functional activities in the wheelchair, categories pertaining to daily activities, wheelchair dexterity and mobility created challenges for a third or more users. as the purpose for providing a wheelchair is to enhance function and mobility this finding remains worrying. the reasons for this can be multiple and might include a lack of training and a lack of physical ability (vegter et al. 2010). borg et al. (2012) found that training significantly decreased activity limitations and participation restrictions of wheelchair users,. however, functional challenges might also be related to wheelchair design, fit and biomechanical set up (vegter et al. 2010; medola et al. 2014; øderud 2014). users using a basic four-wheel folding frame design experienced poorer overall function than those using other wheelchair designs. this may be because this design is not suitable for active users nor for outdoor use on uneven terrain. in addition this design provides little scope for biomechanical adjustments that could enhance user function (pgwc doh 2009b; medola et al. 2014). however, this design was the one most often issued and the wheelchair of choice for both therapists and users. this finding might be attributable to one or a combination of several factors. the basic four-wheel folding frame design was the only wheelchair available on tender, until 2000, and is better known to users and providers. therapists predominantly attributed issuing this type of wheelchair ‘out of habit’. some users considered this design was culturally and aesthetically more acceptable. in addition it is a small, foldable design that takes up less space inside buildings and is easier to transport (medola et al. 2014). finally, it was the cheapest option and funding challenges made therapists select it. whilst appropriate in some instances, for example for the three users who were older than 60 and who had suffered a cerebro-vascular accident (their diagnosis and age are associated with lower activity levels (steffen, hacker & mollinger 2002), it might have limited the function of more active users. the four-wheel design with adjustable settings and fold-down backrest, which was issued the second most often, is considered appropriate for active wheelchair users in urban settings. the adjustable wheelbase of this design can assist with reducing the weight carried by the front castors and, thus, increase manoeuvrability of the wheelchair. in addition, optimal access to the rear wheel and, thus, more effective propulsion can be achieved through the adjustable settings. it is the experience of the authors that its greater manoeuvrability, lighter weight and transportability make this the wheelchair design of choice for many young, active users such as younger persons with spinal cord injuries (dryden et al. 2003). however, the thin rear wheels and front castors, the low position of the footplate in relation to the ground and the short wheelbase make this design unsuitable to some rural and semi-rural environments (pgwc doh 2009a). despite this, many users living in a semi-rural environment were satisfied with this device, resulting from the wheelchair's lighter weight and centre of mass (com) settings that enabled users to be highly active. some users were using their wheelchairs for sport such as wheelchair basketball. mason et al. (2010) found that professional wheelchair sportspeople considered stability to be the most important contributing factor towards performance, and this is a feature that the econorigid® wheelchair offers (pgwc doh 2009b). the atw® may be the more appropriate wheelchair for users living in a rural setting despite its potential access limitations in small houses. this will, however, need to be explored further as only two atw®s were used by participants in this study. it is disquieting that none of the participants living in a rural setting were issued a world made 3® that was specifically designed for rural use. the overall size of the wm3® and the difficulty of transporting it (pgwc doh 2009b) might have influenced therapists and users to be less inclined to select this design than others. transport created a big challenge for user participants in the study. other south african studies have reported similar findings (chakwizira et al. 2010; kahonde, mlenzana & rhoda 2010; ntamo, buso & longo-mbenza 2013). however, this might be attributable to factors other than wheelchair design. as described by current users, minibus taxi operators (the main source of public transport in the study setting) often refuse transport to wheelchair users or charge extra, because it takes longer for the person to transfer into the taxi and the wheelchair takes the room another paying passenger could have occupied. the majority of users in this study, living in rural and semi-rural settings, received wheelchairs designed for urban use. therapists reported that wheelchairs designed for urban use were issued most often in this setting. the findings of this study suggest that this design was not always inappropriate to the users’ environments and supports vegter et al. (2010), as one cannot summarily equate a wheelchair design with an urban or rural setting and no single design can be seen as most optimal for a specific setting, as rural settings are not homogenous (lourenço 2012). a comprehensive assessment is required to determine appropriate design and should include a thorough investigation of the environments in which the user functions. this most likely will require a home, community and or work assessment visit (pgwc doh 2009a). it seems from the findings as if a comprehensive assessment was not always performed. this omission may be why some users received wheelchairs not suitable to the environment in which they lived. visagie, scheffler & schneider (2013) described assessment challenges which may negatively impact wheelchair prescription and overall wheelchair service delivery in a different south african setting. asking the user about the home environment cannot replace an objective assessment. if one never used a wheelchair before you might not realise what aspects of the environment might create barriers and what wheelchair design options can best overcome these barriers. therefore, subjective assessments of the user's home environment should not replace a home visit, especially in the case of first time users. the results show that 17 participants were using a wheelchair that suited at least one aspect of their environment. thus, a trade-off was needed in some circumstances; mostly between the need for a compact and manoeuvrable design in small indoor spaces and for transport, but a sturdy, stable design for rough outdoor surfaces. therapists realised that the wheelchairs currently available on tender were not able to address all the needs of some users. this sentiment is supported by findings from øderud (2014) in zimbabwe. however, it might be that more training and practical experience is required to show therapists and users that, whilst bulkier, the low boom of the three wheel design offers advantages in indoor spaces, as presented in table 1. amos & winter (2013) argue that there is currently no wheelchair design that enables a user to travel both long distances over rough terrain and function in small indoor spaces. the therapists indicated two wheelchairs: one for indoor use and one for outdoor use that might be more appropriate in some circumstances. the findings of the current study, thus, support the rationale that many wheelchair users should have two wheelchairs (pgwc doh 2009b). however, a lack of funding often prevented users from timeously accessing a wheelchair or from receiving the most optimal wheelchair design. thus, issuing one user with two wheelchairs seems impossible. a similarly unsatisfactory and unacceptable solution would be to provide some users with more expensive wheelchairs whilst others receive nothing. every user in need of a wheelchair should receive an appropriate wheelchair, even if the appropriate wheelchair is more expensive than the cheapest model that is available, and budgeting should be implemented accordingly. rural and semi-rural devices are more expensive than the basic, four-wheel, folding frame design and ordering these devices will deplete the wheelchair budget faster. therapists indicated that they issued cheaper designs to ensure that more users are assured of receiving a wheelchair. whilst this argument might seem reasonable, exhaustion caused by trying to propel a wheelchair, designed for urban use, over rugged terrain with narrow, steep footpaths and roads, might cause users to discard the wheelchair even if it is their only means of mobility (mcadam & casteleijn 2005; chakwizira et al. 2010). the issue of durability must also be considered. a wheelchair unsuitable to rugged terrain might break and need repairs and replacement more often, as described by one of the therapists; negating the initial saving of money (mcadam & casteleijn 2005). limitations the non-parametric sampling procedure compromised the external validity of the study and generalisability of findings. sample size was dictated by time and cost implications rather than power analysis. thirty participants are too few to allow for extensive sub-group analysis in order to explore relationships between variables. recommendations more comprehensive assessments, including home and work visits, are recommended to allow for more appropriate selection of wheelchairs. in addition users functioned in two very distinct environments which require a wheelchair that is stable and functional on uneven terrain, yet manoeuvrable and compact in small dwellings. further training of therapists and users is recommended, about the designs offered by the wheelchairs currently on tender and research into wheelchair design for promoting independent mobility in rural settings. research is also recommended that looks into the long term cost and quality of life implications of providing a suitable wheelchair, versus providing a cheaper option that is less suited than others to the environment. conclusion top ↑ the provision of wheelchairs, more suitable for urban use, to users living in rural settings might have impacted the functional outcomes of users adversely, especially in instances where the standard folding four-wheel design was prescribed. reasons for prescribing the basic four-wheel folding frame wheelchair were being predominantly pragmatic, driven by cost, extended time-to-issue and fair distribution. user preference and different environmental needs experienced by the same user created challenges which the current system might be unable to address. acknowledgements top ↑ the authors would like to thank prof m. kidd, statistician at the csc su, and the participants (wheelchair users and therapists) for their time and valuable input. this project received funding from the harry crossley fund. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions s.v. (stellenbosch university) provided guidance during the research; was responsible for the conceptual framework and writing of this article. s.d. (stellenbosch university) was involved in project design; data collection and analysis; and contributed to writing this article. m.u. (stellenbosch university) was involved in project design; made conceptual contributions; and was responsible for editing this article. references top ↑ amos, g. & winter, v., 2013, ‘international design engineering technical conferences and computers and information in engineering conference’, volume 5: 25th international conference on design theory and methodology; asme 2013 power transmission and gearing conference. portland, oregon, usa, august 4–7. borg, j., larsson, s., östergren, p., rahman, a., bari, n. & khan, n., 2012, ‘user involvement in service delivery predicts outcomes of assistive technology use: a cross-sectional study in bangladesh’, bmc health services research 12(330). http://dx.doi.org/10.1186/1472-6963-12-330 chakwizira, j., nhemachena, c., dube, s. & g maponya, g., 2010, rural travel and disability in leroro and moremela villages, south africa, viewed 07 august 2014, from http://researchspace.csif.co.za/dspace/handle/10204/4716 di marco, a., russel, m. & masters, 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wheelchair seating services, pgwc doh, cape town. routhier, f., vincent, c., desrosiers, j. & nadeau, s., 2003, ‘clinical results of an investigation of paediatric limb myoelectric prosthesis fitting at the quebec rehabilitation institute’, prosthetics and orthotics international 25(2), 119–131. http://dx.doi.org/10.1080/03093640108726585 scherer, m., 2002, ‘the change in emphasis from people to person: introduction to the special issue on assistive technology’, disability and rehabilitation 24(1‒3), 1‒4. south african national treasury, 2010, re233-2010me contract circular, supply and delivery of wheelchairs, seating systems, positioners and commodes to the state for the period 1 september 2010 to 31 august 2012, department national treasury, south africa. steffen, t.m., hacker, t.a. & mollinger, l., 2002, ‘age-and gender-related test performance in community-dwelling elderly people: six-minute walk test, berg balance scale, timed up & go test, and gait speeds’, physical therapy 82(2), 128–137. vegter, r.j., de groot, s., hettinga, f.j., veeger, d.h. & van der woude, l.h., 2010, ‘design of a manually propelled wheelchair: optimizing a wheelchair-user combination’, in j.h. stone & m. blouin (eds.), international encyclopedia of rehabilitation, from http://cirrie.buffalo.edu/encyclopedia/en/article/191/ visagie, s., scheffler, e. & schneider, m., 2013, ‘policy implementation in wheelchair service delivery in a rural south african setting’, african journal of disability 2(1), art. #63, 9 pages. world health organisation (who), 2008, guidelines on the provision of manual wheelchairs in less-resourced settings. geneva, world health organization. footnotes top ↑ 1.bscot; manager ce mobility ec. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) melanie c.j.s. leyder department of occupational therapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa fiona breytenbach department of occupational therapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation leyder, m.c.j.s. & breytenbach, f., 2023, ‘factors affecting occupational therapy services for patients with traumatic brain injury’, african journal of disability 12(0), a1203. https://doi.org/10.4102/ajod.v12i0.1203 original research factors affecting occupational therapy services for patients with traumatic brain injury melanie c.j.s. leyder, fiona breytenbach received: 28 feb. 2023; accepted: 09 aug. 2023; published: 06 dec. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: traumatic brain injury (tbi) is one of the top causes of disability in the younger population worldwide. rehabilitation services should be accessible to all citizens to achieve universal health coverage. objectives: this study aimed to explore the barriers and facilitators influencing the provision of rehabilitation for patients with tbi from occupational therapists’ perspectives in gauteng, south african healthcare facilities. it further explored the perceived strategies that would strengthen the delivery and provision of tbi rehabilitation. method: an exploratory qualitative research design was used in this study. a total of 16 occupational therapists were in focus groups either face-to-face or on an online platform. thematic analysis was used to analyse the raw data. results: there were three themes that emerged from the study, namely, ‘not a recipe’, ‘toolbox’, and ‘lost in the cracks’. these themes highlighted the various aspects affecting the rehabilitation of patients with tbi. conclusion: there are factors that both enhance and hinder service delivery for patients with tbi rehabilitation. strategies to overcome barriers to tbi rehabilitation need to be considered to improve service provision for patients with tbi. contribution: this article provides recommendations to improve occupational therapy services for patients with tbi in south africa. the findings can contribute to policy development and education requirements for tbi. keywords: traumatic brain injury; occupational therapy; rehabilitation; barriers; facilitators; focus group; gauteng. introduction traumatic brain injury (tbi) is one of the leading causes of disability in lowand middle-income countries (lmics) (wong et al. 2016). the growing urbanisation of african cities brings an anticipated increase of motor vehicle accidents and a predicted 6 to 14 million new cases in africa by the year 2050 (wong et al. 2016). the expected rise in tbi warrants an urgent call to train healthcare professionals in africa to lessen mortality and morbidity rates because of tbi. while neurointensive care seeks to improve survival rates of tbi cases, rehabilitation mitigates the social and economic burdens of disability because of tbi. the world health organization (who) defines rehabilitation as a ‘set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment’ (who 2017:35). the who’s rehabilitation 2030 initiative advocates for rehabilitation as an essential health service which should be accessible to all persons to achieve universal health coverage (who 2017:3). furthermore, rehabilitation should be administered by a team due the broad scope of specialisations needed to treat complex health conditions such as tbi (who 2017:3). this rehabilitation team ideally includes physiotherapy, physical and rehabilitation medicine, prosthetics and orthotics, psychology, social work, speech and language therapy, and occupational therapy (who 2017:15). occupational therapists form a key part of the rehabilitation team and specifically aim to restore an individual’s independence in daily living including self-care tasks, productivity, as well as home and community integration to lessen the burdens of disability (who 2017:14). factors influencing tbi rehabilitation have been explored in high-income countries among the rehabilitation team. patient’s personal factors, environmental influences, the therapeutic relationship and tbi sequelae are perceived factors contributing to the complexity of tbi rehabilitation (jeyaraj et al. 2013; lam wai shun et al. 2017). facilitators to tbi outpatient rehabilitation include a well co-ordinated multidisciplinary team (mdt) and quality therapeutic intervention (jeyaraj et al. 2013). perceived barriers to tbi outpatient rehabilitation include a lack of resources, limited training and decreased patient time (jeyaraj et al. 2013). additional factors affecting individual specialisations or professions have been found. lam wai shun et al. (2017) reported on factors perceived by occupational therapists regarding the rehabilitation potential of tbi patients in australia. these factors include organisational context, professional expertise, knowledge of scientific evidence and decision-making processes (lam wai shun et al. 2017). however, no literature on the experiences of occupational therapists in lmics with regard to tbi rehabilitation was found. the aim of this study was to explore the barriers and facilitators to the provision of tbi rehabilitation from occupational therapists’ perspectives in public healthcare settings in the gauteng province of south africa. the study further explored the potential strategies to strengthen occupational therapy service delivery for patients with tbi. research methods and design study design the study used an exploratory qualitative research design. this design was identified as the most appropriate method to gain in-depth and rich experiences and perceptions of occupational therapists regarding factors affecting tbi rehabilitation, and to gain better insight into how occupational therapy service delivery can be strengthened in gauteng, south africa (newton suter 2012). participant recruitment inclusion criteria included registered occupational therapists with three or more years of clinical experience and who were working in the field of adult neurorehabilitation in public healthcare facilities (e.g. clinics, hospitals and rehabilitation hospitals) in gauteng, south africa at the time of data collection. purposive sampling was used to recruit participants working in specialist trauma units who admit the most tbi cases in the province. thereafter, snowball sampling was used for further recruitment to locate occupational therapists working in mid-level hospitals and community clinics for the step-down and community reintegration of tbi patients. transferability was ensured through variety in the sample, by inviting participants with differing demographic factors (nowell et al. 2017) particularly variation in years of experience, level of qualification and healthcare setting. data collection the primary researcher and a research assistant facilitated four focus groups between april 2021 and june 2022. the first focus group was face-to-face, while the remaining three focus groups were conducted on an online platform, namely microsoft teams, because of coronavirus disease 2019 (covid-19) restrictions. each focus group was between 60 min and 90 min in duration and conducted in english; see table 1 for demographic information. a focus group guide was used by the primary researcher to facilitate discussion among participants regarding the topic of enquiry, the barriers and facilitators affecting tbi rehabilitation, and strategies that can be used to strengthen tbi rehabilitation service delivery in gauteng, south africa. to ensure all participants contributed, the researcher posed a broad question to the group and used probing to explore the experiences and perceptions of participants in depth (krueger & casey, 2014). the research assistant managed group logistics demands, documented facial expressions and gave a summary at the end of the group discussion (krueger & casey 2014; parker & tritter 2006). each group was audio-recorded. the audio files were transcribed verbatim by a skilled transcriber in preparation for data analysis. transcriptions detailed each participant’s statements by participant code. these were sent to each participant for member checking to assist in the credibility of the study; two participants sent suggested minor changes (birt et al. 2016). table 1: demographics of research participants. data analysis, trustworthiness and rigour of the study thematic data analysis was used for inductive data analysis (parker & tritter 2006) to allow themes and categories to emerge naturally from the data (braun & clarke 2021). the data were analysed through the six-phase process of thematic analysis (braun & clarke 2021). manual coding and maxqda (plus) were used to extract and develop a hierarchical structure of codes (saillard 2011). descriptive coding was used to summarise phrases or passages into topics. in vivo coding was used to preserve participants’ actual words (saldana 2013). the same method of coding was repeated by the primary researcher 2 weeks later to ensure the dependability of the data (morse 2015). thereafter, a draft code manual and two focus group transcriptions were provided to two coders to manually code independently. the two independent coders were the research supervisor and a researcher familiar with thematic analysis in the same field of study. discrepancies in coding between the primary researcher and independent coders were discussed to reach a consensus and clarify codes and code definitions (morse 2015). codes were then analysed by the primary researcher for patterns and connections to determine categories. subsequently, categories were further refined by the primary researcher and research supervisor to finalise codes, categories and themes (rossman & rallis 2012). data triangulation was used to ensure credibility and confirmability of the study (abdalla, oliveira & azevedo 2018). the triangulation technique used combined different sources and methods of data collection, namely group observations by the research assistant, reflexive notes by the primary researcher and the four group transcriptions. to ensure data saturation was met, a code frequency table was populated. twenty-eight codes were generated in the first group, four new codes in the second group, two new codes in the third group and two new codes in the fourth group. four groups were deemed sufficient because the two new codes that arose in the fourth group did not result in a new subcategory. ethical considerations ethical approval to conduct the study was obtained from the human research ethics committee at a university in johannesburg (reference number: m200958). participants gave written consent to participate in the study. confidentiality during the data analysis, results and publication that would arise from the study was ensured through participants being given a participant code (krueger & casey 2014). participants were contacted via e-mail and made aware that they could withdraw from the study at any point. a non-disclosure agreement form was signed before the commencement of each focus group by each participant to reiterate confidentiality. results demographic information a total of 16 occupational therapists participated in the study (see table 1 for demographic information of participants). all participants were occupational therapists who were working in tbi rehabilitation in public health facilities in gauteng, south africa at the time of data collection. most participants (56.25%) were working in acute specialist hospitals (tertiary and quaternary level care), fewer participants (18.75%) worked in mid-level hospitals (regional and district level care) and 25% worked in clinics (primary level care). the majority of participants (81.25%) held an undergraduate degree in occupational therapy, and the remainder (18.75%) held a master’s degree in occupational therapy. the range of working experience as a clinical occupational therapist was between 3 years and 21 years. the range of clinical work in the field of neurorehabilitation was between 2 years and 14 years (median: 6 years 5 months). emerging themes three themes emerged which captured the essence of the barriers and facilitators to the provision of rehabilitation for patients with tbi in gauteng public healthcare settings based on occupational therapists’ perspectives and experiences in tbi rehabilitation: ‘not a recipe’: alludes to the experience of tbi rehabilitation not having a set formula for assessment, intervention and general management: ‘it is not a recipe, and every patient is different.’ (p8) ‘toolbox’: encompasses all the people and processes involved in the tbi rehabilitation process. this includes all treatment, assessment and management of tbi: ‘… there is strategies sort of that you use from your … toolbox … that you use to address specific problems.’ (p8) ‘lost in the cracks’: reports on the perception of patients not receiving, completing or having successful rehabilitation: ‘lost in the cracks.’ (p1) all three themes encompassed both positive and negative factors that influenced tbi rehabilitation. the duality of the three themes is presented separately as the perceived barriers (table 2) and facilitators (table 3) to tbi rehabilitation by occupational therapists. thereafter, strategies (table 4) that were extracted from categories are presented. table 2: barriers to traumatic brain injury rehabilitation. table 3: facilitators to traumatic brain injury rehabilitation. table 4: strategies to improve traumatic brain injury rehabilitation. barriers to traumatic brain injury rehabilitation theme 1: ‘not a recipe’ in the category ‘complexity’, occupational therapists experienced tbi rehabilitation as a difficult and complex process. participants highlighted the variation among patients with tbi with regard to severity, and overall clinical presentation. contributing to the complexity of tbi rehabilitation is the occurrence of polytrauma and other complications. participants based in hospital settings (i.e. quaternary, tertiary, regional and district levels of healthcare) explained that good knowledge and skill are needed to manage the polytraumas these patients experience. concern regarding the management of additional complications by all multidisciplinary members, as well as family members once they are discharged, was voiced. in the ‘neurological impairments’ category, participants from all levels of healthcare expressed the unpredictability of the various long-term sequelae of tbi. these impairments include a combination of cognitive, physical and perceptual deficits. one participant explained that because of the various neurological impairments, physical recovery is often prioritised over cognitive rehabilitation. another participant emphasised that the cognitive, behavioural and emotional impairments were the most long-lasting. furthermore, participants reported that the cognitive and behavioural deficits most greatly impact a patient with tbi’s ability to return to work and reintegrate back into their home and society. as a result of these deficits, occupational therapists perceive return to work as ‘impossible’ and suggested that tbi clients be referred for government disability grant schemes for financial support. the category ‘personal characteristics’ of the patients further add to the barriers of tbi rehabilitation. patients with tbi were reported to be predominantly young adult men of working age who should be at the peak of contributing to the economy and a financial support to their families. another personal characteristic that adds to the barriers of rehabilitation is that patients with tbi are frequently unknown (i.e. no identification) or foreigners and have no known familial support and collateral information cannot be obtained contributing to a long hospital stay. theme 2: ‘toolbox’ in the ‘family’ category, participants in all levels of healthcare frequently discussed the family support for patients with tbi during the rehabilitation process being a tool that can hinder recovery. patients with tbi often have pre-existing social issues that complicate tbi management and little familial acceptance and support during the rehabilitation process can hamper a patient’s recovery. the impact that various neurological impairments have on the family structure was highlighted by participants. the family typically goes through a grieving process of mourning the loss of who that person was prior to the tbi incident. the lack of understanding of the effects of a tbi by family members influences insight. the participants further reported how detrimental it can be to the patients if they are discharged without adequate education and support for family on how to handle the tbi survivor. in addition, a participant highlighted how covid-19 minimised the opportunity for caregiver training and weekend pass-outs, which could benefit the rehabilitation process. in the ‘occupational therapists skills’ category, emphasis was placed on treatment interventions, assessments and management that they perceived as valuable or requiring improvement with relation to tbi rehabilitation. some participants highlighted the need for a set guidelines on handling principles for these patients, which is currently lacking. advocacy was perceived as another occupational therapy skill in the ‘toolbox’. advocacy was perceived to be required for simply getting patients with tbi admitted for rehabilitation or to be handled in a fair manner by participants in the acute levels of healthcare. in the ‘mdt influences’ category, participants perceived themselves to carry out tbi rehabilitation more holistically than their other mdt members. when not done, this was perceived to hinder patients’ progress, as there is limited understanding on the multifaceted presentation of these patients, which can affect their rehabilitation outcomes. concerns about the way patients with tbi are handled and how to pitch and structure their sessions were further highlighted. the participants in hospital-based settings reported the need for mdt members to understand the value of allowing the patient to engage in activities as independently as possible. the ‘educational influences’ category highlighted the level of training provided in tbi to occupational therapists, and the amount of experience and exposure to patients with tbi was another major point of discussion. participants from all levels of healthcare felt that the undergraduate occupational therapy programme needs to be re-evaluated to better equip occupational therapists to engage with patients with tbi. a lack of experience and training is particularly highlighted with community service and junior occupational therapists. feelings of frustration were shared with regard to having to teach a continuously changing cycle of novice therapists the same concepts on tbi rehabilitation. in the ‘management influences’ category, it was highlighted that negative practices by higher management, such as poor dissemination of information, can negatively impact tbi rehabilitation. the ‘documentation’ category related to participants reported that tbi protocols were not contextually relevant. in addition, there is a lack of research on cognition with regard to neurological conditions, and this subsequently affects the quality of rehabilitation. in the ‘appropriateness’ category, three aspects were highlighted as key factors that could negatively affect a therapeutic session. these were the language used to speak to the patient, the just-right challenge and the contextual relevance the intervention provided. theme 3: ‘lost in the cracks’ in the category ‘not seen until completion’, many primary healthcare participants experienced patients defaulting as outpatients which affects patients with tbi not being seen until completion of the rehabilitation process. aspects including substance use, poor socio-economic backgrounds, a lack of finances, poor familial support, community stigma, a lack of insight and motivation, and poor cognitive functioning are contributing factors to defaulting. the referral system was discussed as another factor contributing to a patient getting lost in the system. the ‘rehabilitation package’ category describes the lack of access patients have to all tbi rehabilitation services. participants in acute levels of healthcare (i.e. quaternary) reported that many patients with tbi do not qualify for admission to rehabilitation hospitals. admission criteria to rehabilitation hospitals include, but are not limited to, patients having a peg tube, poor social support or aggressive behaviour. this barrier further aggravates patients getting lost in the system. a participant in primary healthcare explained that patients with a tbi because of a motor or pedestrian-vehicle accident or an injury on duty, do not have access to primary healthcare services at clinics because of billing systems with the road accident fund and worker’s compensation. participants from all levels of healthcare reported a lack of community resources for patients with tbi and their family members. in addition, community resources available for vocational opportunities to allow the return to work for patients with tbi are limited. facilitators to traumatic brain injury rehabilitation theme 1: ‘not a set recipe’ under ‘personal characteristics’, it was noted that young patients often have a better premorbid health status than older patients and neuroplasticity – the key to neurorehabilitation – is more effective in the young brain to allow for good functional outcomes. theme 2: ‘toolbox’ in the ‘family’ category, it was reported that if patients with tbi have good familial acceptance and support during the rehabilitation process, this will act as a facilitator in their recovery. the participants in all levels of healthcare, particularly in primary healthcare, expressed the importance of caregiver training in therapy. the ‘occupational therapists skills’ category encompasses the treatment interventions, assessments and management of patients with tbi by occupational therapists. participants reported that skilled intervention planning in occupational therapy (client-centred activity selection, structuring a therapeutic activity and correct manual handling of the patient) is essential for successful outcomes. participants with work experience of 8 years or more or had their master’s degree in occupational therapy reported on more specific frames of reference, models and assessments to guide their intervention with patients with tbi. these participants reported the positive use of the model of creative ability to guide overall intervention for these patients. the ranchos los amigos scale, brunnström approach and other physical assessments were further reported as useful assessment measures during tbi rehabilitation. the ‘mdt influences’ category reflects how participants experienced a skilled mdt and effective communication among the mdt as a facilitator to tbi rehabilitation. in the category ‘educational influences’, the majority of participants reported the need for more emphasis on tbi on an undergraduate level. one participant based in a quaternary level hospital, highlighted the need to use one’s own clinical reasoning to problem solve when treating patients with tbi. using one’s own clinical reasoning was perceived as helpful as tbi presentation is very broad and a set intervention strategy for these patients may not always be a possibility. under the ‘appropriateness’ category, participants reported the value of using activities to provide contextually relevant intervention for their patients with tbi. participants further reported the model of creative ability as a good tool to allow for the just right challenge for patients with tbi. strategies to improve traumatic brain injury rehabilitation theme 2: ‘toolbox’ under ‘educational influences’, improved training opportunities in the form of workshops or courses were suggested to be a valuable strategy for improved tbi rehabilitation by participants in all levels of healthcare. under the ‘documentation’ category, participants proposed the development of tbi protocols which are contextually relevant to improve tbi intervention. a possible facilitator to protocol development is the formation of a provincial workgroup as suggested by one participant. another participant in an academic quaternary level hospital reported the importance of more research targeted at cognition to improve tbi rehabilitation. the ‘appropriateness’ category included participants’ experience of providing therapeutic intervention in the patient’s home language, and the need to use family members to communicate was reported as a solution to providing therapy in the patient’s home language. theme 3: ‘lost in the cracks’ in the ‘not seen until completion’ category, a potential strategy mentioned by one of the participants, in primary healthcare, was that more prevention and promotion measures need to be put in place to manage the stigma of tbi in communities that results in defaulting treatment. in the ‘rehabilitation package’ category, one participant in a quaternary level hospital reported that there is a need to ease admission criteria at rehabilitation facilities to accommodate tbi patients with polytrauma or cognitive impairments. it was suggested by a participant in tertiary level of healthcare that a resource document should be made on the various training opportunities available for these patients for easier referral and management. strategies related to improving the intervention provided to patients with tbi included improved communication, improved education and training on tbi, protocol development and targeted research. furthermore, strategies to minimise defaulting and improve accessibility to services at all levels of healthcare are valuable. discussion barriers to traumatic brain injury rehabilitation in this study, occupational therapists perceived tbi rehabilitation as complex, owing to the range in severity and the unpredictable clinical presentation of tbis. occupational therapists found this negatively impacted their rehabilitation planning and implementation. furthermore, polytrauma and complications have been found to increase the complexity of the tbi rehabilitation process (capizzi, woo & verduzco-gutierrez 2020; webster, taylor & balchin 2015). polytrauma is common in tbi cases because the mechanism of injury – typically violence (e.g. assault) or injury (e.g. road accidents) – often presents with other injuries, such as fractures (yue et al. 2020). cannoy (2021) found that occupational therapists in the united states of america are expected to use not only neurologically based frames of references to manage patients with tbi but also a more biomechanical approach to treatment to address these polytraumas. similarly, in this study, participants reported that tbi rehabilitation requires a broad knowledge base of the management of various diagnoses. polytraumas and complications were not reported by primary healthcare (clinic) occupational therapist participants, because of this being a potentially more common concern initially at hospitals. patients with tbi can present with an array of physical, cognitive, behavioural, emotional and perceptual dysfunctions (rabinowitz & levin 2014; webster et al. 2015), all of which were highlighted in the various participant discussions. with this complexity, occupational therapists are expected to have advanced clinical reasoning abilities, as no patient with tbi is the same. therefore, occupational therapists are expected to integrate multi-faceted deficits to ensure appropriate treatment plans are put in place for these patients. cognitive, emotional and behavioural deficits were perceived to be the most prominent persistent impairment in tbi survivors by occupational therapists in this study. this finding is supported by the reported 65% prevalence of long-term cognitive difficulties experienced by moderate to severe tbi cases (rabinowitz & levin 2014), as well as behavioural and emotional impairments being present in 60% of cases (trevena & cameron 2011). in contrast, only 30% of tbi cases have a persistent physical disability (berger et al. 1999). despite the greater burden of cognitive deficits long-term, participants revealed that in tbi management, physical rehabilitation is favoured over cognitive rehabilitation in occupational therapy. participants further explained that cognition was found to be less understood by occupational therapists and not as greatly researched in comparison to physical deficits. this is supported by past studies that have shown that cognitive, behavioural and emotional impairments are often omitted and misunderstood (andrew, rothemeyer & balchin 2017; berger et al. 1999; wilson 2017). impairments influence a person with tbi’s ability to successfully re-integrate back into the home and community, as seen in previous studies (camp, casteleijn & thupae 2020; capizzi et al. 2020; webster et al. 2015). furthermore, the cognitive, emotional and behavioural impairments post-tbi impact on an individual’s ability to return to work (andrew et al. 2017; khan, baguley & cameron 2003). these findings support the current study, where numerous participants reported poor integration back into the home, community and workspaces post-tbi because of cognitive and behavioural deficits. in this study, participants viewed tbi occurrence in this demographic to have financial implications, not only to the families of patients with tbi but also to the economy as a whole. wong et al. (2016) highlighted that tbi is most prevalent in 15–34-year-old males in africa, a substantial demographic in a country’s workforce. occupational therapists play a key role in return-to-work assessment and management following a disability (birkhead 2014). however, in this study, occupational therapists experienced poor vocational reintegration of clients with tbi. this finding may only reflect the experiences of the study sample; participants were all working in public healthcare in south africa and serving the nation’s poorest people in the country that has one of the highest unemployment rates in the world at 32.9% (statistics south africa 2023). occupational therapists in this study referred patients for government disability grants to mitigate the financial strain on families but arguably placing a long-term burden on the local economy. occupational therapists expressed difficulties in navigating the assessment of clients with an unknown identification (i.e. no known identification or contacts). occupational therapists experienced difficulties in gaining meaningful background information from an unknown patient, a key component in the development of an occupational profile of an individual (hansell, bissett & caine 2022). therapists mentioned that some of their unknown patients are foreigners too, adding further language, financial and legal barriers to accessing rehabilitation services. south africa hosts the highest number of immigrants on the african continent and foreigners in south africa often have difficulty gaining access to medical services (landau, ramjathan-keogh & singh 2005). with various barriers to appropriately assess patients with a tbi, this results in the lack of a client-centred and holistic approach. perlesz, kinsella and crowe (2000) found that 49% of family members go through psychological distress following tbi. this was also observed by participants who emphasised the vast impact tbi has on patient’s support systems. a south african study reports how families often do not feel adequately educated on tbi and its potential effects (webster et al. 2015). in addition, families are not provided with adequate coping strategies to manage the tbi consequences (webster et al. 2015), with significant impacts on interpersonal relationships within the family dynamic (wedcliffe & ross 2001). in this study, occupational therapists echoed these concerns and felt that time provided to train caregivers is inadequate. during covid-19 restrictions, family support was further impeded by preventing patients from weekend home visits – these ‘pass-outs’ were perceived to be important opportunities for occupational therapists to receive feedback on home reintegration during the rehabilitation process. many young occupational therapists feel unprepared when faced with a patient with tbi because of a lack of experience and exposure, which results in limited clinical reasoning skills when dealing with this patient population, which necessitates the need for improved training in tbi rehabilitation (ned et al. 2020). furthermore, more experienced occupational therapists are in private practice or academia, leaving younger, inexperienced therapists to manage complex tbi cases in public facilities (ned et al. 2020). in south africa, the health professions amendment act no. 56 enacted new graduates to complete a compulsory community service year to serve in public health facilities. although this fills a much-needed gap in service delivery, the annual staff turnover results in a stream of new therapists that require further training in the management of complex conditions in specialised hospitals. this study found that skilled occupational therapists in hospital settings felt frustrated by the need to continuously teach a new cycle of junior therapists. in this study, occupational therapists expressed frustration between their assessment of when a client with tbi is ready for discharge, compared to a nurse or doctor’s perspective. this contrast may be owing to different theoretical frameworks: on one hand, many doctors within the rehabilitation team for patients with tbi using a biomedical model (kusnanto, agustian & hilmanto 2018) which focuses on treating the body, whereas occupational therapists are concerned with all factors influencing engagement in occupations. interprofessional discharge planning meetings (including the patient and caregiver) to improve communication among the team should be prioritised (lutz et al. 2022). in addition, participants also felt that higher management further plays a role in the rehabilitation of patients with tbi, as they often can assert authority and make decisions on the overall management of patients with tbi. there are several international guidelines for tbi; however, they are not contextually relevant to our unique circumstances (pitama et al. 2017). there are no current tbi rehabilitation guidelines that have been developed for the south african setting. this study highlighted that occupational therapists do not feel that there are appropriate guidelines to assist in the management of patients with tbi. there is a strong need for improved research, particularly in cognitive rehabilitation, to strengthen service delivery for these patients. this study further highlights the overall limited research that has been done with regard to tbi rehabilitation in south africa (soeker, van rensburg & travill 2012). the language in which the session is conducted further influences the level of success a patient has during therapeutic intervention (watt, penn & jones 1996). this can impact the therapeutic relationship with the patient and subsequently influence their engagement in rehabilitation. language is a necessary tool to gain valuable information from the patient to ensure client-centred management. language barriers, cognitive deficits and the impact of unknown patients all influence the amount of valuable information we need to obtain on these patients. although, experienced occupational therapists can generalise from past experiences and patient’s context to make clinical reasoning decisions for the rehabilitation of these patients, despite having limited information. whereas those occupational therapists with limited experience do not have any frame of reference when treating these patients, making their treatment planning difficult. in this study, loss to follow-up of patients with tbi was a common barrier experienced among occupational therapists, particularly in primary healthcare settings. participants further explained that patients with tbi are predominantly from poor socio-economic backgrounds with limited finances and resources to adhere to the rehabilitation process once they are discharged home (andrew et al. 2017; joosub 2019; maasdorp, swanepoel & gunter 2020; naidoo 2013). substance abuse and poor socio-economic circumstances appear to be some of the predisposing factors leading to tbi incidences, as reported in literature (joosub 2019; tipton-burton, mclaughlin & englander 2013) and are further emphasised in the current study. in addition, occupational therapists experienced a loss to follow-up for outpatient appointments where there was low acceptance of the tbi survivor by community members and family (jeyaraj et al. 2013). cognitive impairments including poor insight and lack of motivation, further result in tbi survivors not returning for appointments (andrew et al. 2017; bainbridge 2015; barman, chatterjee & bhide 2016; capizzi et al. 2020; webster et al. 2015), as found in this study. these factors contribute to a premature end to a tbi survivor’s rehabilitation journey, hindering their potential for further recovery. international studies recommend inpatients with tbi should receive occupational therapy at least five times a week or alternatively be sent to a step-down facility if not suitable for inpatient rehabilitation (capizzi et al. 2020; chua et al. 2007). it is further recommended that outpatient therapy should continue for at least 1–2 years post-tbi (capizzi et al. 2020; chua et al. 2007). from this study, it is evident that this is not occurring in occupational therapy in the public healthcare facilities in gauteng. patients are receiving limited rehabilitation and participants expressed that few patients with tbi are admitted to rehabilitation facilities because of admission conditions. the participants in secondary, tertiary and quaternary levels of healthcare settings experience the need to advocate for patients to be admitted to rehabilitation facilities and perceived the admission criteria as a barrier to tbi rehabilitation. participants further explained that rehabilitation hospital admission criteria exclude patients with common impairments seen in tbi such as confusion and felt these restrictions needed to be eased. lastly, participants experienced the referral of patients with tbi from one facility to another, and referrals between levels of healthcare, was problematic. participants felt that this contributed to patients getting lost in the system and not receiving essential healthcare services, as they cannot effectively follow-up (andrew et al. 2017). previous studies have reported that there is a lack of outpatient therapy services available in south africa (capizzi et al. 2020). this was reiterated in this study by participants in all levels of healthcare, where it was found that billing systems with the road accident fund and workers compensation fund are managed only at a hospital level and not by primary healthcare (korbin 2014; south african government 1993). patients with tbi are therefore not always able to receive primary healthcare services in the form of home visits and essential support services. this places further financial strain on the patient and their families, as they are expected to travel further to hospitals, as opposed to receiving healthcare services at their local clinic. a study conducted in western cape found limited support groups and facilities which offer continuous cognitive rehabilitation services for patients with tbi (wilson et al. 2015). there were similar findings in this study, where there are limited community resources in the form of outpatient support groups for both the family and patients, as well as limited vocational opportunities available for patients with tbi. there is an urgent need for more support groups in various districts of the province, expressed by participants in all levels of healthcare. many occupational therapists are not aware of what vocational opportunities are available in gauteng and there is insufficient space in these facilities to accommodate the large number of patients with tbi who require it. facilitators to traumatic brain injury rehabilitation although tbi rehabilitation is viewed as complex and multifaceted by occupational therapists, some factors may be promising facilitators to recovery. participants viewed age as a two-sided coin; tbi in young adults was discussed to have a negative impact on the worker role but was also viewed as a good prognostic indicator for recovery. this perception is possibly because of the knowledge that neuroplasticity occurs more effectively in the young brain (kleim & jones 2008). in addition, participants experienced young tbi patients to have good premorbid health, lending to a more favourable outcome in rehabilitation (o’donnell et al. 2010). the unique combination of individual factors that constitute a patient’s prognosis – such as age – highlights the notion that rehabilitation is different for every individual. both national and international studies found that education and support for family members from as early as the acute stages of care is imperative (birkhead 2014; broodryk & pretorius 2015; lam wai shun et al. 2017). this was reiterated in this study, where it was found that successful family training and education allows for improved family support during the rehabilitation process, allowing for better functional outcomes for these patients. thus, education must be done in a timely manner, and be relevant, practical and understandable for the family member. education is not only a necessity with family members but also with other multi-disciplinary team members on how to manage patients with tbi effectively, which maximises their rehabilitation process. although many of the participants felt that there were no guidelines tailored to the south african population, the model of creative ability has been found, in both previous literature and this study, to be a useful model during tbi rehabilitation to provide treatment principles regarding activity selection, structuring of a therapeutic activity and presentation thereof (birkhead 2014). the ranchos los amigos scale is also valuable as a tool to understand the behavioural and cognitive presentation of a patient with tbi (lin & wroten 2022). the modified ashworth scale is further useful to assess hypertonicity in brain injuries (mehrholz et al. 2005). brunnström approach recovery stages have been found to be beneficial in determining upper limb function post neurological insult (naghdi et al. 2010). the use of vona du toit’s model of creative ability, the ranchos los amigos scale, modified ashworth scale and brunnström stages of motor recovery were perceived by participants in hospital settings as valuable tools to use in their intervention and evaluation of patients with tbi. these tools may be more useful in the acute stage of recovery, a possible reason why primary healthcare participants did not discuss them. primary healthcare participants emphasised the need to work on the goals reached together with the caregivers, maintenance of function and compensatory strategies to improve independence. the contrast between the focus on body functions and structures in the acute stage (e.g. brunnström stages of motor recovery) compared to the focus on engagement in activities and participation in the chronic stage requires further investigation. furthermore, the validity of most of these tools in lmics remains to be investigated. an mdt approach to tbi rehabilitation is found to be essential for effective and quality intervention for these patients (barman et al. 2016; camp 2015). the results show this through discussions on the value of an experienced and well-trained mdt in tbi intervention. having good communication between mdt members further facilitates holistic rehabilitation for patients with tbi. research shows that occupational therapists in south africa have difficulty treating patients with tbi once they have completed their undergraduate programme (freeme 2011). however, it was noted in this study that participants who expressed that they utilised their own clinical reasoning skills felt more confident treating patients with tbi. in addition, participants experienced the use of everyday life activities that are familiar to a patient with tbi as a facilitator in their assessment and treatment. it is through these meaningful activities that a patient’s quality of life will be enhanced (huebner et al. 2003). strategies to improve traumatic brain injury rehabilitation translation has been highlighted as a potential strategy to allow better communication between healthcare providers and patients (morris et al. 2021). the study provided the strategy of using the patient’s family members themselves to assist in communication. the participants in all levels of healthcare reported the need for an undergraduate curriculum which targets the specific requirements and training to deal with patients with tbi in a practical setting, with adequate theory to substantiate one’s clinical reasoning, which is supported by a south african study (freeme 2011). courses and workshops targeted at tbi rehabilitation were suggested by participants as strategies to allow for continued professional development in this area and to equip them in the management of tbi. as a result of limited guidelines that are contextually relevant, participants report the need for protocols and guidelines for tbi rehabilitation which are catered to the south african context (pitama et al. 2017). in a country such as south africa where there are diverse cultures and limited resources, it is important that guidelines used for neurorehabilitation are tailored to the specific context (pitama et al. 2017). a provincial workgroup specifically for tbi can be established to assist in further contextually relevant protocols. furthermore, the study highlighted the need for more research in the area of cognition to improve tbi rehabilitation (andrew et al. 2017; berger et al. 1999; wilson 2017). it is essential to put prevention and promotion programmes in place to better educate family and community members on the needs of patients with tbi to minimise stigma and allow increased support (jeyaraj et al. 2013). this was a strategy suggested by a participant in primary healthcare; however, this strategy should extend to other levels of healthcare to allow for adequate implementation of the national health insurance goals (south african government: national health act 2003) (south african government 2015). this was emphasised in the current study, as there is often stigma surrounding patients with tbi. the need for rehabilitation facilities that cater to patients with tbi’s needs is of great necessity. this includes facilities that have adequate training in managing of tbi patients and their various complexities. previous studies have reported the necessity of incorporating vocational intervention as a successful part of tbi rehabilitation (birkhead 2014; khan et al. 2003). this study emphasises the need for more attainable vocational opportunities for patients with tbi, particularly for the largely young tbi population of gauteng. productive occupations such as work will help mitigate the social and economic burden of disability and restore age and gender roles in individuals with tbi. furthermore, it was suggested that a resource document is developed to make occupational therapists listing the vocational opportunities that exist in their community to prevent patients falling through the cracks. limitations as a result of covid-19 restrictions, as well as for easing focus group logistics, only the first focus group was face-to-face, while the remaining three focus groups were conducted on an online platform: microsoft teams. the online focus group discussions could not document non-verbal communication which would have added increased depth to the study (krueger & casey 2014). in the first group, it was found that there was mostly consensus in the group observed through nodding and affirmative sounds, likely because of the homogenous sample. the fourth focus group comprised of only primary healthcare occupational therapists, making the discussion lack the necessary depth, as there were no participants from other levels of healthcare to share different or similar experiences. a fifth focus group of return participants from all levels of healthcare was anticipated to allow for a heterogenous group to discuss varied opinions; however, there was a poor response rate for a return group. this made valuable potential comparisons between participants in various levels of healthcare difficult to determine. the first focus group consisted of five participants, the second comprised of four participants, while the third and fourth focus groups comprised three and four participants respectively. based on kielhofner’s (2006) recommendations, it is suggested that five to six participants are involved in each focus group; however, because of a lack of availability of participants, most groups were made up of less than five participants. lastly, connectivity issues disrupted group discussions at times. conclusion the aim of this study was to explore barriers and facilitators to the provision of tbi rehabilitation from occupational therapists’ perspectives within public healthcare settings in gauteng, while determining strategies to improve service delivery. it is evident from the results that although there are factors which support and enhance service delivery for patients with tbi rehabilitation, there are more factors impacting the quality of rehabilitation for these patients. strategies to overcome barriers to tbi rehabilitation include making use of translators, revision of the occupational therapy undergraduate curricula in south africa, as well as the development of workshops and courses on tbi management. the development of provincial workgroups for tbi, improved research on cognition in tbi and the development of contextually relevant guidelines, local policies and protocols pertaining to tbi are also required. finally, tbi prevention and promotion strategies need to be put in place, improved admission of patients with tbi to rehabilitation facilities, as well as the development and improved accessibility to community resources (both support groups and vocational opportunities) are further strategies that can be explored. recommendations for future research this study only explored the perceptions of tbi rehabilitation with occupational therapists in the gauteng region of south africa. research in other provinces of the country will allow comparisons to be made regarding the barriers and facilitators to tbi rehabilitation across south africa. this will allow a better understanding on a larger scale, while potentially providing more valuable insight into the rehabilitation process of these patients. exploring the perspectives of tbi rehabilitation with other mdt members who are involved within the tbi rehabilitation process will provide more holistic viewpoints on the barriers and facilitators to tbi rehabilitation, while providing a different lens on various strategies to overcome the barriers experienced. it is further recommended that the barriers of tbi be explored through a who international classification of functioning, disability and health environmental factors framework. acknowledgements the authors would like to express their appreciation for each one of the participants who contributed valuable insights to this study, as well as dineo thupae for assisting in supervising the protocol development of this study. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions m.c.j.s.l. contributed to the conceptualisation, methodology, analysis, investigation, resources, data curation, writing, editing and reviewing of the article. f.b. contributed to the conceptualisation, methodology, analysis, data curation, supervision, and reviewing and editing of the article. funding information the authors received no financial support for the research, authorship, 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traumatic brain injury: a track-tbi pilot study’, neurotrauma reports 1(1), 32–41. https://doi.org/10.1089/neur.2020.0004 abstract introduction study design findings and discussions conclusion, implications and recommendations acknowledgements references about the author(s) mubi f. mavuso department of psychology of education, school of educational studies, university of south africa, pretoria, south africa citation mavuso, m.f., 2022, ‘exploring senior phase teachers’ competencies in supporting learners with specific learning difficulties: implications for inclusive education’, african journal of disability 11(0), a901. https://doi.org/10.4102/ajod.v11i0.901 original research exploring senior phase teachers’ competencies in supporting learners with specific learning difficulties: implications for inclusive education mubi f. mavuso received: 04 june 2021; accepted: 09 june 2022; published: 31 aug. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: teaching learners with specific learning difficulties requires competent teachers who can provide learning support. competencies such as identifying learning difficulties, assessing learners, designing interventions such as curriculum differentiation and facilitating referral systems are crucial. however, senior phase teachers in south africa seem to be challenged when it comes to providing learning support. consequently, learners do not meet the desired learning outcomes. objectives: the purpose of this study was to explore senior phase teachers’ competencies in supporting learners with specific learning difficulties in four mainstream schools. methods: a qualitative research approach and phenomenological research design were used. eighteen teachers who were members of the school-based support teams, including learning support educators, were selected through purposive sampling. data were collected through individual and focus group interviews, the analysis of support forms and field notes. a thematic data analysis was used to generate findings. results: the thematic data analysis revealed discrepancies relating to participants’ competencies in identifying language difficulties, short-term memory problems and contextual barriers. also, participants differed in collaborating with peers, social workers, and the district-based support teams. furthermore, some participants were able to design intervention programmes and facilitate internal and external referral processes. conclusion: the study concludes that teachers have different competencies in providing learning support. therefore, the department of basic education should provide a clear practical learning support strategy in the senior phase mainstream schools as well as continuous professional development for teachers couple with monitoring. contribution: it is envisioned that the study will contribute to understanding teachers’ competences in providing learning support for learners with specific learning difficulties in the senior phase. the study advocates for collaborative continuous professional teacher development focusing on interventions programmes to support learners with specific learning difficulties in the mainstream schools. keywords: learning support; specific learning difficulties; teacher competencies; inclusive education; barriers to learning. introduction the purpose of the study on which this article is based was to explore senior phase teachers’ competencies in supporting learners with specific learning difficulties (splds) in mainstream schools. specific learning difficulties are common in schools. they include dyslexia, dyspraxia, dysgraphia and dyscalculia (rowlands et al. 2013). they can also include visual processing, auditory processing, time management and sensory difficulties (pumfrey and reason 2013). furthermore, splds highlight the discrepancy between academic achievement and intellectual ability (gresham and vellutino 2010). specific learning difficulties may be less readily identifiable, do not always have a clear physical basis and are more subject to different social contexts (donald, lazarus & lolwana 2006). therefore, the description of the concepts splds is complex and constitutes various views from researchers (donald, lazarus & lolwana 2010). teaching learners with splds requires competent teachers who display positive attitudes towards learners (sagor & cox 2013). these attributes are critical to ensure that learners with splds learn optimally and achieve the desired learning outcomes – more so because most learners who experience splds have learning difficulties that are accommodated in mainstream schools, where they learn with their peers as part of a policy of inclusive education (department of basic education [dbe] 2010a; ferguson 2008). although such competencies are crucial, senior phase teachers in the mainstream schools seem to be challenged in providing learning support for learners presenting with splds. this results in an alarming number of referrals to the inclusion and special schools (iss) unit that mediates learning support processes within an inclusive education context at the district office. in the current study, learners who presented with splds were between the ages of 14 and 18 years. they could not read or write in their african languages or in english as a first additional language. some could not recognise or write their own names; they performed poorly and had repeated grades several times. their referral to the iss unit that mediates the learning support process within the inclusive education context occurred when they were already in grade 7 and grade 9. the observation suggested that teachers lacked learning support competencies such as identifying learning difficulties and assessing learners. they could not design and implement interventions such as curriculum differentiation. furthermore, they struggled to facilitate accommodations and referral systems. lack of such competencies happened despite availability of education policies which are aimed at promoting inclusive education and, by implication, providing learning support. for instance, the education white paper 6 (ewp6): special needs education – building an inclusive education and training system (department of education [doe] 2001) was intended to promote equal and quality education. the guidelines for full-service inclusive schools (dbe 2010b) acknowledge that certain learners require individualised attention and suggest that these needs could be determined through the strategy on screening, identification, assessment and support (sias) process that utilises support needs assessments (doe 2008, 2014). therefore, the implication is that teachers should be competent in providing learning support. on the one hand, scholars such as woolfson, grant and campbell (2007) state that mainstream teachers have not always responded positively to the inclusion of learners with learning difficulties. furthermore, dreyer, engelbrecht and swart (2012) point out that teachers in the mainstream schools have not been adequately equipped to deal with barriers in diverse classrooms. teachers were prepared to teach in either special schools or mainstream schools (donohue & bornman 2014). in practice, this means that those who teach in the mainstream schools were not exposed to supporting learners with splds and their learning needs. despite these observations, little is known about the competencies of teachers in providing learning support in the senior phase mainstream schools and how their competencies influence learning support processes. wentzel (2016) investigated learning support for children with mild intellectual difficulties in primary schools in port elizabeth within the eastern cape province and found that untrained teachers struggled to support learners, whilst chataika, kamchedzera and semphere (2017) found that mainstream primary school teachers in the lilongwe urban district of malawi were challenged in planning instructional strategies for inclusive classrooms. considering the proclaimed inadequate preparedness of mainstream teachers for inclusive education practices in supporting learners with splds, it was deemed necessary to explore the competencies of teachers, as they could influence learning support processes. the research questions were phrased as follows: what are the teachers’ competencies in identifying splds? what are the teachers’ competencies in implementing learning support processes? what are the teachers’ competencies in collaborating? what learning support interventions do teachers design? teacher competencies in providing learning support teachers are better positioned to provide learning support in inclusive classrooms (de jager 2013; forlin & chambers 2011). thus, teachers require multiple competencies, such as knowledge and skills related to teaching, in order to be able to respond to diverse learning needs (chireshe 2013; mavuso 2015; nel, nel & hugo 2013a). such competencies include identifying learning difficulties (dbe 2014; zwane& malale 2018); assessing learners (kanje & mthembu 2015; venter 2012); differentiating the curriculum (dbe 2010; dednam 2011; lake 2010); using different instructional strategies (donohue & bornman 2014; lake 2010); referral systems; implementing accommodations such as large print; amanuensis or use of a scribe; additional time; using assistive devices such as computers and braille; an interpreter for deaf learners, rephrasing for deaf learners and use of a separate venue (dbe 2010, 2011; venter 2012); and facilitating internal and external referrals and collaboration (dbe 2014; doe 2001). importantly so, learning support is part of teaching and learning and should not be regarded as a separate process. identifying learning difficulties is an ongoing process. therefore, identification means that teachers observe learners as they teach and record their observations on what the learners can do; they need to note areas that pose barriers to learning. these observations should be communicated to parents, who could assist with additional information for screening (eds. aro & ahonen 2011). the competencies required for this mean that teachers must be knowledgeable about what factors constitute splds (dbe 2014). linked to observations, teachers should be able to screen learners for academic performance and not necessarily for diagnosing a learning disability (farrall, wright & wright 2015). this is because a diagnosis requires specialist competencies and training. for this reason, venter (2012) suggests that teachers should consult specialists in the community to obtain more information about other barriers and disabilities. the provision made by the dbe in south africa is that teachers should work collaboratively with the school-based support teams (sbsts) and the district-based support teams (dbsts) (dbe 2014). as a result, educational psychologists within the dbsts should be contacted to assist with specific identification, assessment and support. such a practice is recommended as not every school has private educational psychologists that could assist teachers within their schools. however, parents should not be excluded from the process, as they can provide valuable information regarding their observations about the learner. teachers’ competencies in assessing learners involve collecting, interpreting, documenting and using information about a learner (kanje & mthembu 2015; lombard 2010; venter 2012). therefore, assessment should be used as an integral part of teaching and learning and should be viewed as continuous and not as a once-off activity (landsburg 2011; looney 2011). researchers such as herman, osmundson and silver (2010); grigorenko (2009); and vogel (2011) argue that assessment informs teachers about the learner’s progress regarding meeting learning outcomes. thus, it can be used by teachers to improve their teaching, identify the strengths and learning barriers encountered by the learners and inform parents about the progress of the learner. in addition, teachers require competency in using assessment to inform learners regarding what is expected from them, how to improve their learning and what skills and knowledge they require to progress in their learning (doe 2011). consequently, different forms of assessment can be carried out to enhance learning. for instance, to establish prior learning, teachers should be able to use a curriculum-based diagnostic assessment. the observations from such an assessment could be used to plan and design individualised instruction as a form of support (dbe 2014). walton (2012) states that individualised support plans are necessary and can benefit learners who require structured and individualised interventions and support. in assessing learners, teachers should also be competent in using formative assessment as a holistic approach to teaching. formative assessment is necessary as part of the continuous identification of gaps in learning; it is mostly beneficial for learners with learning difficulties, as it minimises inequality amongst learners (kanje & mthembu 2015; looney 2011). hence, as an intervention strategy, formative assessment should be carefully planned and aligned with what should be learnt. it should provide for the learner’s unique learning needs to ensure that the learner progresses. related to formative assessment is the competency of giving learners constructive feedback. such an action recognises that learners are not spectators in their learning; they can also construct their learning. for this reason, researchers such as yong and carless (2013) contend that learners have preferences when it comes to feedback from teachers, and they consider it to be beneficial. learners can also benefit from feedback as they become aware of what is expected of them. the advantage of giving feedback is that it can help teachers to see progress made by learners and to prepare further scaffolding for learners. in essence, continuous learning support could be evident. similarly, curriculum differentiation forms part of key competencies for ensuring the successful provision of learning support (dbe 2010a; dednam 2011; lake 2010). differentiating the curriculum means that teachers are competent in establishing learners’ readiness to learn, acknowledging their differences and in planning and implementing appropriate instructional methods (venter 2012). differentiation also includes adjusting the content and ensuring that different methods are used to impart the information and skills required by learners to learn (merga 2020). it also involves the process of planning the learning activities in a way that engages learners and relates to the product that shows evidence of applied skills and knowledge of what has been learnt (bornman & rose 2010). researchers such as nel et al. (2013a) contend that curriculum differentiation includes scaffolding. for this reason, woolfolk (2010) speaks of systematic scaffolding and indicates that for it to be beneficial, it should be varied for individual learners. the researcher proposes that teachers should be flexible when implementing scaffolding as a learning support strategy. differentiations could also be used by adapting teaching strategies (donohue & bornman 2014; lake 2010). dednam (2011) advances that adapting teaching strategies involves cognitive support that equips learners with skills to actively attend and perceive stimuli through using auditory and visual senses and building learning experiences through self-activity. during the process of differentiation, learners are advised to use those strengths that best help them to learn, and they should be taught different study techniques that will assist them to memorise information. teachers should also be competent in facilitating accommodations as a strategy for accessing the curriculum (dbe 2010a; miller 2009; nel et al. 2013b; venter 2012). hence, teachers are viewed as mechanisms that create pathways to learning without changing the learning outcomes. provisions made for accommodations include using scribes, large print, additional time and writing in a separate venue (dbe 2010). importantly, teachers could enhance learning support processes through adopting universal design for learning (udl) principles by ensuring that learning material is presented using multiple formats of media that provide multiple pathways for students’ actions in accessing the information and using multiple ways to engage students’ interest and motivation (browder et al. 2008, 2010; walton 2012). it is also important that teachers become competent in collaborating with other teachers, dbsts and other professionals when a need arises to alleviate blockages that could inhibit learning support (doe 2005, dbe 2014). training of teachers on learning support competencies occurs through workshops conducted by the officials from the iss unit in collaboration with other relevant stakeholders and through continuous teacher development. study design a qualitative research approach was used in the study by involving senior phase teachers from four mainstream schools. the approach was chosen because of its descriptive, explorative and explanatory nature (merriam 2009). it could also assist in uncovering the meaning participants attach to the phenomenon of splds and learning support. thus, the experiences of senior phase teachers were described within their unique context and in detail to understand their beliefs (babbie & mouton 2008; henning 2004). the research design was phenomenological, for the purpose of understanding the meaning teachers attached to providing learning support for learners presenting with splds in mainstream schools. it was used to understand participants’ perceptions, within their context (eds. de vos at al. 2006). it assisted in interpreting the meaning the participants gave to their everyday lives and experiences (creswell 2007), and it offered a descriptive, reflective and engaged mode of enquiry (mcmillan & schumacher 2010). selection of participants a purposive sampling was used in this study. it included senior phase teachers (grades 7–9) who were members of the sbsts and were therefore allocated roles of providing learning support. specifically, they included subject teachers, heads of departments in life orientation and learning support educators who were invited to participate on a voluntary basis. participants had also interacted with learners who presented with splds. they were selected because they were the holders of the data needed for the study (creswell 2009) and could provide the richest data to allow the researcher to gain insight into how learners presenting with splds were supported (cohen, manion & morrison 2008). one would therefore expect that the participants were competent to provide learning support. it was necessary to understand how their competencies enhanced or hindered the learning support processes. the participants had varying levels of teaching experience. after the purpose of the study was explained to them, the participants signed consent forms. they were assured of confidentiality and anonymity. the participants were from four schools, three of which were in a township and one was in the city centre. the schools were selected because they had a substantial number of referrals of learners who presented with splds. data collection methods data were collected through semistructured individual and focus group interviews, the analysis of support records and a reflective journal. the interviews were conducted in four schools considered to be convenient for all participants. the interviews lasted for approximately 45 min – 60 min. there was no interference with teaching and learning. the semistructured, open-ended questions for both individual and focus group interviews focused on how teachers provided learning support for learners presenting with splds. the questions were phrased to elicit competencies identifying learners with splds’ difficulties, interventions they used and the learning support processes they used. the questions were asked in a flexible manner. the interviews allowed the participants to reflect their reality and helped the researcher to obtain answers to the research question (babbie & mouton 2008; de vos et al. 2011). six participants were interviewed individually. they consisted of four teachers and two learning support educators. two sets of focus group interviews were conducted with participants who shared similar experiences regarding the topic being investigated (babbie et al. 2008; greeff 2009). each group had four teachers from each school who did not participate in the individual interviews and two learning support teachers. they allowed space for participants to get together and create meaning amongst themselves, rather than doing individually, thus giving them an opportunity for shaping and reshaping opinions. support forms were used as documents for corroborating the data from the interviews and to enhance the trustworthiness of the study (mcmillan & schumacher 2010). these documents are used by teachers to document their observations and the interventions they use. they excluded confidential medical and psychological documents, as it was not the intention of the study to focus on such records. as de vos et al. (eds. 2009) advise, field notes were included to record what the researcher heard, saw, experienced and thought during the process of interviewing. data analysis data analysis was conducted in the form of thematic content analysis (henning, gravett & van rensberg 2004). the process included transcribing the interviews, reading each transcript several times to get a sense of the data, breaking down the data into manageable sections, identifying differences, similarities, relations and interactions within themes, assigning codes through labelling each section of the data related to the research question (creswell 2009), testing the emergent understandings and representing and visualising the findings (eds. de vos et al. 2009). meanwhile, support forms were interpreted by ascertaining how teachers documented the learning support processed. trustworthiness of the study trustworthiness was ensured through credibility, which was achieved through prolonged engagement in the field until data were saturated; persistent observation by looking at what was happening in the field as the author entered each site, as well as during interviews; peer debriefing by discussions with peers and presenting in the seminars and being critiqued; reflexivity by writing notes on the author’s thoughts after interviews; transferability, which was achieved through purposive sampling and a thick description of the findings; dependability by using multiple data sources; and confirmability by triangulation and audit trail (lincoln & guba 1985). feedback was provided to all the participants, allowing them to corroborate the findings (babbie & mouton 2008; eds. de voset al. 2006). ethical considerations ethical procedures included obtaining an ethical clearance certificate from the university where the study was conducted (reference number 2013074) and obtaining permission to conduct the study from the gauteng department of education, the district director and school principals. ethical clearance to conduct the study was obtained from the faculty of education research ethics committee, university of johannesburg. consent was also given by the participants. other ethical measures included confidentiality, anonymity, respect, giving feedback to the participants and ensuring that the participants were not harmed. findings and discussions the findings revealed that teachers had different competencies when it came to the provision of learning support. their competencies differed in terms of how to identify splds, designing and implementing interventions, processing internal referrals and collaborating with external stakeholders. these are discussed in the following section. teachers’ competencies in identifying specific learning difficulties the findings indicate discrepancies amongst members of the sbst on how to identify learners presenting with splds, with some members displaying competency whilst others lacked competencies. the participants who were able to identify these learners could articulate their observations by mentioning symptoms such as significant language difficulties, difficulties with reading and writing, difficulties with spelling and short-term memory problems, and they referred to contextual barriers that contribute to splds. by contrast, those who seemed unable to identify learning barriers mentioned that they could not describe the splds. they knew that something was wrong, but they could not articulate it. the following are selected extracts of what was expressed: ‘as a teacher, you can immediately identify a learner that has a problem in english. a learner will look at a word for more than a minute, even if you give time to read. some would skip words when they read. their vocabulary in english is poor and not at the grade 7 level.’ (participant 4, female, learning support educator) ‘so you [the teacher] can easily see learners with communication problems. you observe that they struggle to communicate because of language difficulties. so learners with language difficulties cannot give you answers when you ask them a question. i have seen this when i speak in english.’ (participant 3, female, hod/sbst coordinator) contrasting views were expressed as follows: ‘you are not sure what you see. you see that something is not ok … [pause] but are not sure. so for the sake of time, you continue teaching your subject.’ (participant 14, female, grade 8 and 9 teacher) ‘you recognise the problem of the child when it is towards the end of the year, when it is already late or when the child would have been failing by then.’ (participant 17, male, grade 8 and 9 teacher) similarly, zwane and malale (2018) found that high school teachers in swaziland felt incompetent in identifying learners with learning challenges. therefore, identifying learners presenting with splds is of paramount importance. it can assist in preparing appropriate interventions for supporting the learner (dbe 2014). differing competencies amongst teachers is therefore problematic, as it can delay referral processes for learners. thus, the findings have a bearing on the continuous professional development of teachers to strengthen their competencies and to promote collaboration amongst teachers. linked to competencies in supporting language difficulties, participants also expressed their experiences in identifying reading and writing difficulties as follows: ‘i could clearly see that they don’t know how to write, because i don’t think they had proper foundation at the primary level. their spelling is poor and not at grade level. if you give them a paragraph to write, you identify incomplete words and sentences.’ (participant 6, female, grade 7 teacher) ‘once a learner glances at the book whilst reading, i start to think that there could be problems. others add words which are not in the text they are reading. those who struggle with writing, you just cannot read their handwriting.’ (participant 18, male, grade 8 and 9 teacher) in contrast, the following views were reported: ‘we should be trained how to identify different learning difficulties. this is important, especially for those learners who cannot read and write. most of us are clueless about reading and writing problems.’ (participant 8, female, learning support educator) ‘i continue to teach what i have to teach, even if i see that something is wrong. i cannot tell what is wrong. therefore, i focus on the lesson to complete the syllabus. so i also think we should be trained intensively on how to support learners.’ (participant 16, female, grade 8 and 9 teacher) as pretorius et al. (2016) indicate, training of teachers on reading is essential as it might be linked to lack of competencies in teaching reading. supporting learners with reading difficulties serves as a basis for offering learning support, because the inability to read affects understanding and adversely influences learning. failure to identify this prevents learners from benefiting from alternative methods of learning support. it may therefore be necessary to re-examine the structure and functions of the sbst, the manner in which training is done and how it functions. competencies in implementing learning support processes this subtheme highlighted competencies relating to learning support processes. such competencies include practical steps that teachers should take in providing learning support, which, in addition to identification, include developing individual support programmes, using an internal and external referral system and collaboration. selected views were as follows: ‘because there are different learning barriers, when it comes to academic fields, you do adaptations; for example, time is for learners who are slow in class; you give them a little extra time. others, for example with visual problem, you make the writing bigger.’ (participant 10, female, hod/sbst coordinator) ‘i try to translate, give the learner examples, the similarities and the opposite of the words [antonyms], you know, for the learner to understand what the vocabulary is.’ (participant 5, female, learning support educator) however, conflicting views were expressed as follows: ‘because i teach many subjects, i do not know how to plan a programme to support learners. i may try, but i do not know how to do that in all subjects.’ (participant 3, female, hod/sbst coordinator) ‘i think the learning support educators must support educators in class with their adaptations, because educators don’t know how to. i also do not know what to do if a learner can’t read or write.’ (participant 13, female, grade 8 and 9 teacher) ‘it is my second year of teaching. i am surprised to see many children with many learning problems. even if i want to assist, i have no clue where to start in planning and writing support programme. what is also surprising is that i did not learn such at the university.’ (participant 2, female, grade 7 teacher) dalton, mckenzie and kahonde. (2012) also reported that planning and working collaboratively by teachers and therapists benefited learners. therefore, one could gather that the participants had varying competencies in classroom practices and implementing processes, as envisioned by the dbe. such views also showed that the systematic planning of learning support processes could be hampered by work overload and blurred expectations of the roles of teachers in relation to the provision of learning support. the subtheme also highlights the problem of preservice training, where inclusive education is an option in teacher training as an elective and not infused in different modules. competencies in collaborating the study also revealed that to some extent, teachers do work collaboratively but that it is contextual and varies from school to school and from participant to participant. in the same school, for instance, some teachers worked collaboratively as peers as recommended by the dbe, whilst others chose to collaborate with social workers and the dbspts in the community. it also seemed that some teachers worked collaboratively in an informal manner. the participants expressed themselves as follows: ‘one of our hods [heads of departments] in school is actually qualified; she has a senior degree in learning support. so that’s one person that when you are stuck, you will literally go and ask her.’ (participant 3, female, hod/sbst coordinator) ‘you need someone for counselling before you can start with curriculum issues. so i refer learners to the local social worker. some of the cases, i refer them to the district.’ (participant 17, male, grade 8 and 9 teacher) ‘teachers are not collaborative enough to be at ease to do case discussion. in my view, it is better to work with other people in the school and outside the school. people may have solutions to the problem.’ (participant 18, male, grade 8 and 9 teacher) however, others said: ‘with me, i have to rely on myself and do everything. i only teach and try to complete the syllabus. who can really help me when everyone is concerned about their workload [rhetorical]?’ (participant 13, female, grade 8 and 9 teacher) ‘to be honest, i do not know the role of the sbst, so what is the use? it is just important to teach and focus on all learners and not just one learner.’ (participant 14, female, grade 8 and 9 teacher) ‘in my grade, we focus on the syllabus. i do my work. if one learner struggles, i just teach and focus on the rest of the class. in my heart, i know that what i am doing is not ok. i don’t think anyone can help me.’ (participant 7, female, grade 7 teacher) collaboration amongst stakeholders within the education system has long been regarded as essential, but as lerner and kline (2006) assert, to be successful it must be based on certain principles, such as establishing a common goal and ensuring that it is voluntary and carried out by people who take responsibility for their actions. there should also be recognition of equality amongst partners and a sharing of accountability for the outcomes as well as the resources. teachers need to be supported by both the general teacher and the special educator. these principles are also embedded in the policy guidelines for the establishment of sbsts (doe 2005). analysis from support forms it emerged that teachers could name few splds, such as reading and writing difficulties. however, they did not elaborate on reading errors like omissions, substitutions and additions of words. teachers considered calling parents and giving extra work as learning support interventions. information about interventions such as curriculum differentiation, scaffolding, using individualised learning support programmes and using learner profiles to establish existing difficulties and support provided in previous grades was not captured. additionally, the records indicated that parents were called but did not come to schools, without elaborating how were the parents called and how were such actions considered as support strategies. support forms reflected that there were no strategies that worked. furthermore, although the support forms required parents’ signatures, such signatures were missing in most support forms. in some cases, participants indicated that parents did not respond when they were invited even though the south african schools act (1996) and the ewp6 (doe 2001) indicate that parental involvement is an important aspect of learning. the dates on the forms also suggested that teachers completed support forms when they were about to submit to the district or when placement for specific learners was requested by parents. monthly reports completed by learning support educators reflected that they used specific terminology such as numeracy, literacy, splds like possible dyslexia, a serious language barrier or significant language difficulties, spelling backlog, as well as emotional, socio-economic, systemic, individual and pedagogical factors as their evidence of providing learning support. the records also showed that they could elaborate on such terminology and how they collaborated with other stakeholders like parents, the district officials and social workers. field notes as a researcher, the author observed participants expressing their thoughts openly about how they provided learning support. their thoughts assisted in extracting the competencies they had. conclusion, implications and recommendations this study has found that teachers have different competencies when it comes to providing learning support. teachers are at the centre of facilitating learning support processes; hence, their competencies can enhance or hinder learning support. the problem is that most teachers have not been formally trained in inclusive education and specifically not in supporting learners presenting with splds. this places pressure on the dbe to offer intensive training in inclusive education during the continuous professional development programmes for teachers. one other approach would be to collaborate with institutions of higher learning in support of teachers and to encourage teachers to register for short learning programmes in inclusive education and other learner support-related programmes. the dbe should also strengthen structures such as the sbsts, so that every teacher will be familiar with the learning support processes. specifically, the dbe should monitor and support these processes. one such example would be to ensure that those who coordinate these structures are appointed permanently and not voluntarily. this would improve accountability and ensure that learners will be supported. additionally, structures and systematic collaboration with stakeholders such as social workers, health practitioners and educational psychologists should be used to facilitate learning support. acknowledgements the author would like to thank the supervisor, dr dunbar-krige, for supervising the study. competing interests the author declares that there are no financial or personal relationships that may have inappropriately influenced writing of this article. the author further declares that there is no conflict of interest with regard to the publication of this manuscript. author’s contributions m.f.m. is the sole author and contributed to the design and implementation of the research, to the analysis of the results and to the writing of the manuscript. funding information this research was funded by master’s and doctoral support programme at the university of south africa. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of the author. references aro, t. & ahonen, t. 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teachers’ controllability and stability attributions for children’s difficulties in learning’, educational psychology 27(2), 295–306. https://doi.org/10.1080/01443410601066826 yong, m. & carless, d., 2013, ‘the feedback triangle and the enhancement of dialogue feedback processes’, teaching in higher education, 18(3), 285–297. https://doi.org/10.1080/13562517.2012.719154 zwane, s.l. & malale, m.m., 2018, ‘investigating barriers teachers face in the implementation of inclusive education in high schools in gege branch, swaziland’, african journal of disability 7(0), a391. https://doi.org/10.4102/ajod.v7i0.391 abstract introduction literature review methodology results discussion conclusion and future studies strengths and limitations of the study acknowledgements references about the author(s) makhaya j. malema department of sports, recreation and exercise science, faculty of community and health sciences, university of the western cape, bellville, south africa luzaan africa interprofessional education unit, faculty of community and health sciences, university of the western cape, bellville, south africa linda caldwell department of recreation, park and tourism management, the pennsylvania state university, pennsylvania, united states marie young department of sports, recreation and exercise science, faculty of community and health sciences, university of the western cape, bellville, south africa lisa wegner department of occupational therapy, faculty of community and health sciences, university of the western cape, bellville, south africa citation malema, m.j., africa, l., caldwell, l., young, m. & wegne, l., 2022, ‘guidelines for leadership development of youth with physical disabilities through leisure education: a delphi study’, african journal of disability 11(0), a1073. https://doi.org/10.4102/ajod.v11i0.1073 original research guidelines for leadership development of youth with physical disabilities through leisure education: a delphi study makhaya j. malema, luzaan africa, linda caldwell, marie young, lisa wegner received: 13 may 2022; accepted: 07 aug. 2022; published: 04 nov. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: youth with disabilities benefit by developing a skill set to help resolve any issues during their daily activities, including pursuits that lead to productive livelihoods. acquiring leadership skills through leisure education programmes may be particularly effective for youth with disabilities to gain confidence in their leadership abilities. objectives: this study aimed to develop and reach a convergence of opinions on the preferred elements of a leisure education programme to promote leadership development among youth with physical disabilities. method: in this study, a three-round delphi methodology was used. in the first round, 16 experts participated; in the second round, 14 experts participated; in the third round, nine participated. the first round of the delphi method consisted of a qualitative questionnaire with open-ended questions, which assisted in developing guideline statements. the results from the first round informed the second and third rounds of the study. the guidelines were reviewed for consensus in subsequent rounds using a likert scale format. results: in the final round (third round) of the delphi method, the expert panel consisting of nine participants agreed that leadership development for youth with physical disabilities could be promoted by leisure, recreation, sports and activities of daily living. conclusion: these guidelines are essential in building resilience, empowerment and independence and can be seen as a positive contribution to communities with disabilities and young people with and without disabilities. contribution: these guidelines would build capacity and resilience among youth and equip them with the skills and abilities to initiate leisure programmes. keywords: leisure education; leadership development; leadership skills; youth development; youth with physical disabilities. introduction youth leaders can become change agents within their societies by developing skills to resolve issues that may arise during daily activities (grenwelge, zhang & landmark 2010). it is argued that for youth with disabilities to attain collective independence from institutions and service providers, they must be able to influence each other within their community and nominate a leader (dowse 2001). according to the national consortium on leadership and disability for youth (n.d.), young people must persuade their peers to lead themselves. by building their capacity as leaders, youth would be able to recognise areas that need change and bring about needed changes (national consortium on leadership and disability for youth n.d.). youth development is essential and can be championed by developing leadership skills to help youth with disabilities deal with daily challenges. youth development programmes have the potential to develop and build the capacity for young people to face current and future obstacles through structured activities that offer learning opportunities (national consortium on leadership and disability for youth n.d.). youth with physical disabilities face daily challenges and often have no support to navigate societal barriers. one area of support that has received some attention is developing leadership skills among youth with physical disabilities. angima, etuk and maddy (2016) caution, however, that just providing adequate resources (which can include equipment, support and training) is inadequate to foster leadership skills; therefore, this paper focuses on identifying elements of a leadership development programme that have the potential to provide effective leadership training for youth with disabilities. the national longitudinal transition study-2 (2004:2) in the united states of america estimates that less than 3% of youth with disabilities take part in youth development and leadership development opportunities. in the south african context, van niekerk (2014) reports that youth programmes organised through governmental structures are implemented with political agendas to mobilise youth into the political atmosphere while neglecting their skills development. the current study forms part of a bigger project which argues that leisure education programmes can be used to promote leadership development. historically, leisure education programmes have focused on opportunities designed to promote social skills among youth with disabilities (cory 2004), quality of life, community development (levy 2000), perceptions of leisure (ertuzun 2015), adaptive coping skills, well-being (hartman, evans & anderson 2017) and inclusive leisure service (dattilo 2018). furthermore, leisure education programmes have been used to support caregivers of people living with dementia (carbonneau, caron & desrosiers 2011). there is an existing gap in the literature on leisure education as a tool for developing leadership. literature review leadership skills are personal skills in which individuals build their capacity through various experiences and engagements. according to fredriksson, geidne and eriksson (2018), developing personal skills involves offering support to an individual on a personal and social level and encouraging information sharing, training and education and lifelong skills. the concept of leadership is perceived and argued in the context that youth with physical disabilities can influence their peers, leading them during leisure education programmes. leadership in this context involves an individual’s ability to influence a group of people to reach a shared objective (redmond & dolan 2014). leadership requires an individual to lead and guide and people to follow. it is proposed that through the guidelines developed in this study, youth with physical disabilities will influence their peers to be part of leisure education programmes as they grow into their leadership roles. in this study, knowledge about leisure education is seen as a mechanism to facilitate leadership development among youth with physical disabilities. youth with physical disabilities need to know who they are leading and what goal is being achieved. understanding the followers and goals will allow youth with physical disabilities as leaders to gain valuable, insightful and meaningful experiences from leisure education programmes to lead their peers successfully. leadership is a lifelong skill used daily among peers in a society and community. being a leader of a minority group can be seen as an inspiration for other young people and may positively influence leisure participation. influential leaders occupy multiple roles, including good communicators, enablers, innovators, teachers, coordinators, motivators, problem solvers and decision-makers (russell 2001). participants are presented with an opportunity for self-expression by promoting creativity, fantasy and progression toward personal potential; learning and growth are presented by opportunities for learning and growth, exploration and exposure to new facts and ideas (edginton & edginton 1994). the role of leisure education leisure education can facilitate skills development and build capacity among youth with physical disabilities. leisure is valued for offering opportunities for youth with disabilities to express, explore, discover, create, exchange and communicate meaningfully with their peers (edginton 2006). according to segve (2018), a leisure education programme has three purposes: (1) embracing the outdoor environment and activities, sports and diversity of games and play; (2) facilitating fun and enjoyable activities such as cooking, gardening, watching television and participating in leisure-time physical activities; and (3) including activities that are interpersonal-social. thus, it is important for youth with physical disabilities to engage in leisure education programmes to develop valuable skills while benefiting from fun and enjoyable activities. the charter for leisure education and recreation association (1993) and sivan (1997) stated that leisure education refers to a focused, methodological and well-aligned process that recognises an individual’s choice and right to leisure, and the meaningful use of it, to influence and enable desirable patterns of leisure behaviour. in this study, leisure education is adopted as the lifelong learning process that facilitates leisure-related skills and positive values and attitudes by using leisure activities to develop themselves within a leisure context (dieser 2012; sivan 1997; stebbins 1999). this definition is aligned with the charter’s objective about leisure education. it aims to inform and guide stakeholders such as governments, nongovernmental organisations and educational institutions about the importance and benefits of leisure and education (sivan 1997). the current study argues that youth with physical disabilities can use leisure education programmes as a tool to develop and nurture their leadership skills. it is acknowledged that youth with physical disabilities would need to collaborate and actively contribute to leisure education programmes within their communities. leisure education as means to develop leadership according to the swedish national agency for education (2014), good quality leisure-time centres depend on competent teachers and pedagogues who can lead and implement the programmes and activities according to the curriculum and published research. thus, leisure services and programme providers have an important role in developing, transferring and nurturing skills and knowledge for the benefit of the participants. bengu (former minister of education in south africa) called for education and training change (department of education and training [det], parliament of south africa 1995). he stressed the importance of a: [n]ational project of reconstruction and development which compels everyone in education and training to accept the challenge of creating a system that cultivates and liberates all people’s talents without exception. (p. ii) the current study embraces the same notion by the south african department of education and the swedish national agency for education. youth with physical disabilities can thus develop leadership skills through leisure education activity programmes. the swedish national agency for education (2014:14) suggested that learning programmes in leisure-time centres could be formal, informal and flexible to create accommodating and stimulating environments where the interests of the participants are at the forefront of planning. the current study is underpinned by leisure education and leadership development principles. the elements within each domain offer an opportunity for youth with physical disabilities to be developed as leaders using leisure education as a tool. how leisure education can develop leadership skills leisure education programmes can help develop and promote lifelong skills such as leadership abilities for participants, regardless of physical, intellectual and other limitations (segve 2018). according to malema, young and wegner (2022), the ability of youth with physical disabilities to develop leadership rests on their active engagement in leisure education programmes. additionally, youth with physical disabilities can advance their self-development through opportunities that allow them to explore and identify their leisure time needs, thereby building their capacities as leaders. the authors further argue that leadership development shows that leisure education is appropriate for youth with disabilities to become leaders. furthermore, jooste (2019) argued that building networks and relationships are crucial for youth with physical disabilities to develop as leaders. this enables youth to seek support and build up their capacity in areas they lack, allowing them to be the leaders their peers can follow. leadership capacity can be facilitated through developing and practising leadership skills that match youth’s personal abilities (sivan 2014, 2017; sivan & chan 2012). therefore, leisure education programmes must facilitate and provide opportunities for youth with disabilities to demonstrate an application of their leadership skills (jooste 2019). additionally, because decision-making is an important component of leadership, youth with physical disabilities must be able to demonstrate and develop their abilities to make decisions during their leisure engagement (sivan 2014, 2017; sivan & chan 2012). facilitating leadership development in leisure education programmes also implicates the community context. leisure service providers are challenged and encouraged to offer opportunities for social activities that can influence the attitudes of community members towards positive participation and being mindful of the use of language that promotes people’s dignity and that advocates for the communities they live in (dattilo 2018). albertyn and frick (2016) argue that leadership development efforts must focus on the skills relevant to the current diverse and challenging times. this article reports the results of a delphi study conducted with an expert panel to develop a consensus around the preferred elements of a leisure education programme designed to promote leadership among youth with physical disabilities. therefore, this study aims to develop and reach a consensus on the preferred elements of a leisure education programme to promote leadership development among youth with physical disabilities. methodology design a three-round delphi method was used to design and develop guidelines for youth with physical disabilities. grobbelaar (2007) refers to the delphi method as a research methodology exploring the anticipated future of innovative and evolutionary phenomena. jünger et al. (2017) described the aim of the delphi method as the formation of consensus and/or explanation of a topic beyond existing knowledge and the present conceptual world. this method is based on the premise that well-informed individuals, drawing on their perceptions and prior experience on the topic of study, are better prepared to estimate the future than theoretical approaches or trends (grobbelaar 2007). participants the recruitment and selection of the experts in this study followed a standard protocol (grime & wright 2014). a panel of experts was identified using purposive sampling. the inclusion criteria were that participants could include academics, researchers, professionals, practitioners, programmers, service providers, people living with disabilities and activists who had the knowledge and/or expertise in leisure and recreation, youth and leadership development and youth or disability studies. a total of 37 eligible experts were identified and were sent an information letter via e-mail explaining the procedure of the delphi method and expectations should they agree to participate. the experts were identified through their literature contribution to leisure and leisure education, and their research on people with disabilities. the same experts completed each round, excluding those who dropped out in round two. in each round of the delphi communication process, three e-mails were sent out to the participants who acknowledged and indicated their interest in the communications. the first e-mail was the official list of questions that required their engagements. this was followed up by two e-mail reminders at least 3 weeks apart to remind expert panel members who may not have engaged in the discussion. participants were perceived to have dropped out when they failed to acknowledge the e-mail or confirm their interest in participating further in the study. data collection data collection was done through three rounds. the research team used google forms (alphabet inc., mountain view, california, united states) to distribute the self-administered questionnaire to the expert panel, and the google form automatically saved the participants’ responses into an excel spreadsheet (microsoft corporation, redmond, washington, united states). the following eight themes were developed as a synthesis from the findings of the bigger project which include scoping review, quantitative and qualitative approaches: (1) feasible strategies for developing leadership skills in youth with physical disabilities; (2) feasible out-of-school approaches for leisure activity programmes that follow a nonformal structure; (3) guide to help youth with physical disabilities realise their maximum leadership potentials; (4) implementing leadership skills during leisure education programmes; (5) implications for allowing youth to take the lead in their leisure activities; (6) role modelling and peer support among youth in communities or societies; (7) balancing leisure education programmes to promote holistic development; and (8) the benefits of knowledge sharing for leadership development. in this investigation, the first round of the delphi study consisted of a qualitative questionnaire with open-ended questions to gather information from an expert panel. this first round explored the experts’ perceptions on guidelines for leadership development using leisure education as a tool. the expert panel was expected to comment on how those questions can develop youth into leaders during leisure education. the feedback from round one was used to develop the guidelines, which informed the subsequent rounds of the study. in the second round, the guidelines developed in round one were used to develop a likert scale survey. the iterative process was continued until 70% consensus was reached, which indicates that theoretical saturation was achieved (skulmoski, hartman & krahn 2007). in round three, the panel of experts validated round two as an accurate reflection of how the guidelines can facilitate leadership development using leisure education. examples of the statements and questions are the following: statement: activities that can promote leadership development include leisure, recreation, sports and physical activity programmes and activities of daily living. question: how can these activity programmes be implemented to develop leadership during leisure education programmes? statement: leisure activity programmes in an out-of-school context are recommended. such activities can use a nonformal structure, making learning and development specific as per the participant, for example, youth with a physical disability. question: how feasible is it to use an out-of-school approach to implement leisure education programmes for leadership development among youth with physical disabilities? statement: it is recommended that youth with physical disabilities identify their leadership skills and abilities that they can develop further during leisure activities. question: how can youth with physical disabilities realise their leadership skills? data analysis this study used thematic analysis to analyse and present data for round one. the researcher read the responses from each expert separately. notes were made in the margins to highlight guidelines recommended for each of the eight themes. using the notes and responses from this round, the researchers applied a deductive analysis approach to present the guidelines relevant to developing youth with physical disabilities to become leaders. the data from round two were analysed through a basic descriptive statistical analysis to obtain the percentage as a level of agreement from the expert panel using the ibm spss statistics version 27 (ibm corporation, armonk, new york, united states) (goerge & mallery 2019). for round two, the guidelines were rated using a five-point likert scale with the following ratings: 1 = strongly disagree, 2 = disagree, 3 = not sure, 4 = agree and 5 = strongly agree. these ratings were used to determine consensus among the expert panel. the research team checked the completeness and correctness of the responses on the questionnaire items. the current study adopts the stance of hsu and sandford (2007) and boulkedid et al. (2011). they recommend that at least 70% of expert participants rate three or higher on a five-point likert type scale and that the median score must be greater than 3.25 to demonstrate consensus. furthermore, the current study’s five-point likert scale was grouped into three categories: nonconsensus (‘strongly disagree’ and ‘disagree’ ratings), consensus (‘strongly agree’, ‘agree’ ratings) and ‘neutral’. ethical considerations this study received ethical approval from the biomedical research ethics committee at the university of the western cape (ethical clearance number bm20/2/1). all participants gave informed consent and were informed about their right to withdraw from the study without repercussion. results the results of this study reports findings from data collected through qualitative and quantitative methodology which formed the current delphi technique. the demographic information of this study is reported in table 1. table 1: demographic information of the participants in round one. in round one, 16 experts out of 37 (43% participation rate) agreed to be part of the delphi study and completed the open-ended questions. these participants were geographically diverse and included national (south africa–based) and international experts. in round two, 14 experts out of 16 (attrition rate of 12.5%) completed the likert-scale questionnaire. in round three, nine participants out of 14 (attrition rate of 35.7%) from south africa completed the questionnaire and confirmed the guidelines as a true reflection. only south africa–based experts completed round three. the expert panel in this round were purposively selected because of their perceived understanding and experiences of the south african context, culture and communities, being residents in the country. the following forms part of the theme statement and guidelines formulated and agreed upon by the expert panel. theme one: feasible strategies for developing leadership skills in youth with physical disabilities the expert panel reported that consideration of the context plays an essential role in leisure, recreation, sports, physical activities and activities of daily living to facilitate leadership development for youth with physical disabilities. participants expressed that various factors need to be implemented to ensure leadership development. tables 2–9 presents feasible strategies for developing leadership skills in youth with physical disabilities as shared by the panel of experts. participants were asked to rate these guidelines in round two based on the guidelines identified in round one. in round two, participants agreed that all five guidelines could facilitate youth with physical disabilities to develop leadership during leisure education programmes. table 2: guidelines for leadership development through leisure, recreation, sports, physical activities and activities of daily living. table 3: guidelines for an out-of-school approach to leisure education programmes. table 4: guidelines for youth with physical disabilities to realise their leadership skills. table 5: guidelines on how leadership skills can be developed during leisure education programmes. table 6: guidelines of the implications for allowing youth to take the lead in facilitating their leisure activities. table 7: guidelines on role modelling and peer support among youth with disabilities within their communities and societies. table 8: guidelines on balancing leisure education programmes to promote holistic development among youth with physical disabilities. table 9: the benefits of knowledge sharing for leadership development among youth with physical disabilities. theme two: feasible out-of-school approach for leisure activity programmes that follow a non-formal structure the expert panel shared their perceptions on how an out-of-school approach needs to consider elements that facilitate independence, support and a less restrictive environment. in round two, participants agreed that all five guidelines are feasible during an out-of-school approach for a leisure education programme. theme three: guide to help youth with physical disabilities realise their maximum leadership potential participants recognised the importance of youth with physical disabilities realising their leadership potential to facilitate their development. in round two, they agreed that all six guidelines are important to consider, and careful attention is required for youth with physical disabilities to be developed as leaders. theme four: implementing leadership skills during leisure education programmes participants shared their perceptions on what they considered feasible for leadership development using leisure education programmes for youth with physical disabilities. participants were asked to rate these guidelines in round two based on the guidelines identified in round one. in round two, participants agreed that all five guidelines could guide youth with physical disabilities to be developed as leaders using leisure education as a tool. careful planning and individual consideration are needed to successfully develop youth as leaders. theme five: implications for allowing youth to take the lead in their leisure activities the expert panel shared their knowledge of the implications of allowing youth with physical disabilities to take the lead in facilitating their leisure activities. in round two, participants agreed that all five guidelines have good implications and promote youth with physical disabilities to take the lead in facilitating their leisure activities. the proposed guidelines allow youth to learn, grow and develop through active engagement when taking the lead in their preferred leisure activities. theme six: role modelling and peer support among youth in communities or societies the expert panel shared their perceptions on how youth with physical disabilities can be developed as leaders by embracing role modelling and offering peer support within their communities and societies. in round two, participants agreed that all five guidelines help youth with physical disabilities become role models and offer peer support within their communities and societies. theme seven: balancing leisure education programmes to promote holistic development the expert panel agreed that balanced leisure education programmes could facilitate holistic development among youth with physical disabilities. in round two, participants agreed that all five guidelines are essential when planning a balanced leisure education programme to promote holistic development among youth with physical disabilities. theme eight: the benefits of knowledge sharing for leadership development participants reported on their perceptions of knowledge-sharing for leadership development among youth with physical disabilities. in round two, participants agreed that all seven guidelines are essential knowledge-sharing elements to develop leadership in youth with physical disabilities. discussion this study established guidelines that enable youth with physical disabilities to develop leadership skills using leisure education programmes. participants agreed that leadership development for youth with physical disabilities could be promoted by leisure, recreation, sports and activities of daily living. these guidelines will assist youth in developing the capacity to take the initiative and plan their leisure programmes. according to olsen and burk (2017), the challenge of developing leadership is not teaching leadership concepts but instead developing leadership skills through a practical application of strategies and guidelines. leisure, recreation, sports, physical activities and activities of daily living offer practical exposure to youth with physical disabilities. schreuer, sachs and rosenblum (2014) also argued that involvement in discretionary play and leisure activities is significant for developing essential skills, self-identity and well-being. therefore, the present study’s guidelines are feasible to follow and have an impact on youth, which suggests that they can be implemented successfully. additionally, the findings from the present study recommend that an out-of-school context would enable leadership development among youth with physical disabilities. the idea of an out-of-school context is ideal based on the notion that youth with physical disabilities should rely not only on formal school or institutional programmes but also programmes within their communities where they can decide when and how to be part of the programme. dowse (2001) noted that youth with disabilities should collectively participate in political activities to influence policies and how they are implemented in their local communities, with an overall target to facilitate social transformation. this perception can contribute to youth taking ownership of their leisure spaces. furthermore, the findings of this study suggest that youth with physical disabilities can be supported to realise their leadership skills. jacobsen and thorsvik (2008) proposed that leadership can be seen as a series of actions by one or more people and that leadership is focused on facilitated learning. augustsson (2018) stated that leadership is appropriate when others need to be influenced or persuaded. therefore, this study argues that a perception that youth with physical disabilities can influence and persuade their peers during leisure education programmes leads to them becoming leaders. in the current study, participants reached a consensus on guidelines of how leadership skills can be developed during leisure education programmes. the guidelines reported in this study illustrate that youth with physical disabilities can be held accountable and responsible for their leadership development. leisure service providers could be supportive agents of the guidelines from this study. various programmes can enhance this approach for youth that are more than merely fun activities (caldwell 2000). considering the statement by caldwell (2000), when youth are engaged in a leisure education programme to develop and build their skills and promote their abilities, leadership becomes inevitable. the current study recommends allowing youth to take the lead in facilitating their leisure activities. these guidelines constitute strategies that enable youth to be at the forefront of their leisure education programmes, allowing them to exercise their leadership development. this notion calls for consultation and needs assessment when planning leisure and recreation programmes explicitly involving youth with physical disabilities. wilson (2000) shares that for too long, participants accepted whatever programmes had been planned and implemented for them. the expert panel embraced the guidelines on role modelling and peer support among youth with physical disabilities within their communities and societies. according to allman and cutforth (2014), successful leadership within the sports sector depends on the ability to unite under a feasible vision and secure stakeholders to deliver on it. therefore, it is essential for youth with physical disabilities to be united with mainstream society and not operate in isolation. kim et al. (2016) suggest that people with disabilities use leisure to promote life satisfaction, foster social relationships, enhance self-esteem and confidence and cultivate hopefulness and happiness. wilson (2000) recommends a need for new approaches to recreation planning, programming and delivery of services to accommodate the interest and needs of all population groups. this statement includes youth with physical disabilities who form part of society. the findings of this study reported consensus on guidelines about balancing leisure education programmes to promote holistic development among youth with physical disabilities. elements of these guidelines advocate for a supportive environment which enables holistic development among youth with physical disabilities. dryfoos (1998) suggests that leisure and recreation programmes offer youth the relevant and necessary skills to overcome daily challenges and build resilience. similarly, green, kleiber and tarrant (2000) argue that intervention programmes can challenge youth mentally, socially and physically and provide the opportunity to facilitate long-term change and growth. therefore, it is anticipated that by following these guidelines, the youth can become leaders for themselves and their peers and be equipped to deal with daily challenges. furthermore, the expert panel in this study acknowledged the benefits of sharing knowledge to promote leadership development. the guideline elements suggest that youth with physical disabilities must own and have access to information and have adequate support to develop their leadership. albertyn and frick (2016) recommend exploring change and knowledge management in a collaborative process, assisting in implementing strategies for progress in education. although albertyn and frick’s study focuses on education within higher education, a case is made that the same sentiments can apply to leisure education programmes. therefore, it is anticipated that the present study’s guidelines can be used successfully by youth with physical disabilities. shinew, hibbler and anderson (2000) suggest that the youth must be educated about the relevant skills to navigate their daily challenges. these guidelines are essential in building resilience, empowerment and independence and can be seen as a positive contribution to communities with disabilities and young people with and without disabilities. conclusion and future studies the guidelines developed in the present study can be used to implement and initiate leisure activity planning, develop individual capacities and nurture leadership skills among youth with physical disabilities. the guidelines aim to equip and allow youth with physical disabilities to develop as leaders within their communities and peers, take the initiative and plan their leisure programmes. the guidelines in this study can be considered feasible and beneficial to youth with physical disabilities. for these guidelines to be fully implemented, youth with physical disabilities must be actively involved in leisure education programmes to develop leadership skills. it is concluded that leadership skills acquired and developed through leisure education programmes can be used outside the programmes to navigate day-to-day and life situations. therefore, the researchers recommend that future studies investigate the influence of implementing the guidelines on youth leadership development. strengths and limitations of the study the guidelines formulated in this study are realistic and can bridge the exclusion gap for people with disabilities in south africa. the guidelines can be adopted in other parts of the world to evaluate their impact within different settings. the significance and contribution of these guidelines lay a good foundation for more research within the disability communities. the limitations of this study include restricted expert panel availability, low response and a high dropout rate. despite the study’s limitations, the positive contribution of this study outweighs the limitations. acknowledgements the authors wish to acknowledge and thank all the experts that took part in this study and the office of the deputy vice chancellor in the university of the western cape for the support throughout this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions the authors’ contributions to this manuscript are as follows: m.j.m.’s contribution was conceptualising the manuscript, writing up and collecting data. l.a. was invited to co-author the article due to her expertise in delphi studies methodology. her contribution included research instrument development guide, data analysis and presentation layout. l.c. was invited to co-author the article due to her expertise in youth leadership and leisure studies. her contributions include reviewing the manuscript draft and adding the international perspective as an expert. m.y. and l.w. reviewed the draft manuscripts. funding information the authors express their profound appreciation to the national research foundation (nrf; grant no. 112069/131214, awarded to the lead author), for funding the study. the nrf accepts no liability in regard to this study. data availability the data that support the findings of this study are available from the corresponding author, m.j.m., upon reasonable request. disclaimer the views and opinions reported in this manuscript are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references albertyn, r. & frick, l., 2016, ‘a collaborative higher education initiative for leadership development: lessons for knowledge sharing’, south african journal of higher education 30(5), 11–27. https://doi.org/10.20853/30-5-617 allman, m. & cutforth, c., 2014, ‘leadership in sport: a local authority perspective’, the 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https://doi.org/10.28945/199 stebbins, r.a., 1999, ‘educating for serious leisure: leisure education in theory and practice’, world leisure & recreation 41(4), 14–19. https://doi.org/10.1080/10261133.1999.9674163 van niekerk, p., 2014, ‘an exploratory analysis of youth leadership development in south africa: theoretical and programmatic perspectives’, master’s thesis, stellenbosch university. wilson, r.e., 2000, ‘recreation services in a multicultural society’, journal of park and recreation administration 18(3), 98–102. world leisure education & recreation association, 1993, ‘wlra international charter for leisure education’, world leisure journal 36(2), 41–45. abstract introduction research methods and design results discussion limitations conclusion acknowledgements references appendix 1 about the author(s) eva s. bazant jhpiego, baltimore, united states elizabeth j. himelfarb hurwitz jhpiego, baltimore, united states brenda n. onguti jhpiego, nairobi, kenya emma k. williams jhpiego, baltimore, united states jamie h. noon noon design, cerrillos, united states cheryl a. xavier private sector, matale, sri lanka ferdiliza d.s. garcia college of allied medical professions, university of the philippines, manila, philippines anthony gichangi jhpiego, nairobi, kenya mohammed gabbow national council for persons with disabilities, government of kenya, kenya peter musakhi ministry of east african community (eac), labour and social protection, government of kenya, kenya r. lee kirby division of physical medicine & rehabilitation, dalhousie university, canada citation bazant, e.s., himelfarb hurwitz, e.j., onguti, b.n., williams, e.k., noon, j.n., xavier, c.a. et. al., ‘wheelchair services and use outcomes: a cross-sectional survey in kenya and the philippines’, african journal of disability 6(0), a318. https://doi.org/10.4102/ajod.v6i0.318 original research wheelchair services and use outcomes: a cross-sectional survey in kenya and the philippines eva s. bazant, elizabeth j. himelfarb hurwitz, brenda n. onguti, emma k. williams, jamie h. noon, cheryl a. xavier, ferdiliza d.s. garcia, anthony gichangi, mohammed gabbow, peter musakhi, r. lee kirby received: 22 sep. 2016; accepted: 03 apr. 2017; published: 20 oct. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the world health organisation recommends that services accompany wheelchair distribution. this study examined the relationship of wheelchair service provision in kenya and the philippines and wheelchair-use–related outcomes. method: we surveyed 852 adult basic manual wheelchair users. participants who had received services and those who had not were sought in equal numbers from wheelchair-distribution entities. outcomes assessed were daily wheelchair use, falls, unassisted outdoor use and performance of activities of daily living (adl). descriptive, bivariate and multivariable regression model results are presented. results: conditions that led to the need for a basic wheelchair were mainly spinal cord injury, polio/post-polio, and congenital conditions. most kenyans reported high daily wheelchair use (60%) and adl performance (80%), while these practices were less frequent in the philippine sample (42% and 74%, respectively). having the wheelchair fit assessed while the user propelled the wheelchair was associated with greater odds of high adl performance in kenya (odds ratio [or] 2.8, 95% confidence interval [ci] 1.6, 5.1) and the philippines (or 2.8, 95% ci 1.8, 4.5). wheelchair-related training was associated with high adl performance in kenya (or 3.2, 95% ci 1.3, 8.4). in the philippines, training was associated with greater odds of high versus no daily wheelchair use but also odds of serious versus no falls (or 2.5, 95% ci 1.4, 4.5). conclusion: select services that were associated with some better wheelchair use outcomes and should be emphasised in service delivery. service providers should be aware that increased mobility may lead to serious falls. introduction an estimated 20 million people worldwide in 2003 needed a wheelchair for mobility and lacked one (world health organization [who] 2008). in less resourced settings, access to appropriate wheelchairs is limited. an appropriate wheelchair allows the user to meet his or her mobility needs in the local environment, providing postural support with proper fit and is durable, safe, available, affordable and maintainable by the user (who 2008). globally, charitable, governmental and service organisations provide wheelchairs. however, users in less resourced settings often receive inappropriate wheelchairs or wheelchairs with inadequate services. awareness is increasing wheelchair provision by trained personnel increases the chance that wheelchair users receive appropriate wheelchairs (toro, eke & pearlman 2016). the who guidelines on the provision of manual wheelchairs in less resourced settings calls for the components of wheelchair service delivery to include referral and appointment, assessment, prescription (selection), funding and ordering, product preparation, fitting, user training, follow-up, maintenance and repairs (who 2008). few studies have assessed whether users in less resourced settings have received these services and user outcomes (borg et al. 2012; greer, brasure & wilt 2012; toro et al. 2016). lack of service provision may be one of the reasons for wheelchair abandonment. in 2005 in west bengal, india, over half of 162 hand rim–propelled manual wheelchairs distributed to individuals with lower-limb dysfunction went unused because of pain, fatigue, discomfort and lack of habitat adaptability (mukherjee & samanta 2005). it is not known if the users who abandoned these wheelchairs had received any supportive services. wheelchairs need to be rugged to withstand use in challenging terrain (rispin &wee 2014). in nepal, two-thirds of donated standard wheelchairs in one study needed replacement within two years, leaving users unable to access the community independently (scovil et al. 2012). even in the united states, about half of wheelchairs need repair within six months of issue (worobey et al. 2012). user involvement in wheelchair selection has seen positive effects. in bangladesh, measuring a user for a wheelchair increased the likelihood of wheelchair satisfaction, and wheelchair training was associated with the user reporting fewer activity limitations and participation restrictions (borg et al. 2012). the effectiveness of wheelchair skills training is well documented (for instance best et al. 2005, 2016; kirby et al. 2016a; macphee et al. 2004; ozturk & ucsular 2011; routhier et al. 2012; worobey et al. 2016; tu et al. 2017). however, greater wheelchair use in varied terrain can lead to falls and injury (berg, hines & allen 2002; calder & kirby 1990; gaal et al. 1997; kirby et al. 1994; nelson et al. 2010; xiang, chany & smith 2006). the objective of this study was to examine whether wheelchair service receipt is associated with successful wheelchair use among adult, basic manual wheelchair users in less resourced settings. the hypothesis was that wheelchair service receipt is associated with high daily wheelchair use, independent outdoor mobility and high performance of activities of daily living (adl) and with fewer reports of serious falls. research methods and design design and locations this was a cross-sectional survey of wheelchair users in kenya and the philippines. the two-country study was done in sub-saharan africa and asia at the request of the funder. wheelchair sector stakeholders advised the research team on the study location. priority was placed on countries with high wheelchair distribution, countries with organisations providing wheelchair services and a country where the institution of the lead author of this article had an office. in each country, investigators met with stakeholders in the field of disability and wheelchairs to discuss the study purpose and methods. dissemination of information about the study to organisations, sampling and recruitment we aimed to enrol a sample that would be composed equally of participants who had received services with the current wheelchair and those who did not. eligible wheelchair users were age 18 or older, did not require postural support and those who received their current or most recently acquired wheelchair within the past five years but greater than three months before the survey date to ensure experience with the current chair. exclusion criteria were being a temporary wheelchair user or a user of an arm-crank–propelled tricycle, inability to communicate in either english, swahili in kenya or filipino in the philippines; or inability to understand the questions. in the philippines, it was difficult to find users who had received services. in the last month of data collection, the study protocol was amended to include wheelchair users who had received the current wheelchair in the last 10 years. the screening question to potential participants was: ‘when you received your current or most recent chair, did a wheelchair provider help you choose the right wheelchair? the provider might have measured your body, checked the fit of the wheelchair, or made adjustments to the wheelchair.’ in kenya, residents of urban and peri-urban areas were sampled from lists provided by wheelchair-providing organisations that were faith-based, non-governmental, community-based, related to disabled person’s rights or government hospitals and schools. in the philippines, greater manila residents were sampled through lists of wheelchair users provided by five local government units that provided wheelchairs to citizens, a wheelchair charity and a non-governmental organisation that employed wheelchair users. in addition, in both countries, snowball sampling occurred, in which study participants referred members of their personal networks. participants and up to one caregiver received locally appropriate participation and travel reimbursements in the philippines. in kenya, local investigators considered reimbursement inappropriate and it was not given in kenya, per the study protocol and this was approved by the ethical review boards. sample size the sample size calculation was specified to detect a difference of 15% points on the primary outcome of high daily wheelchair use between wheelchair users who reported receiving services with the current chair and those who did not. the hypothesis was that the outcome would be 50% among those in the service group, a percentage that would yield the largest and most conservative sample size. the power was set at 80%, alpha level of significance was set at 0.05 and intra-cluster correlation was set at 0.002. the sample size calculation called for 500 per country with 10 clusters or groupings. data collection and management data collection occurred from december 2014 to june 2015 in kenya and from february to may 2015 in the philippines. in kenya, the authors’ institutional staff collected data. in the philippines, a local organisation with experience in disability sector research was selected through a competitive process. data collection was conducted by 8 surveyors and 4 field supervisors in kenya and 15 surveyors and 7 field supervisors in the philippines. surveyors had secondary education and data collection experience in the philippines and college/university education in kenya. in each country, surveyors received one week of training on data collection procedures, including use of the instruments, informed consent and research ethics. the paper-based tool was digitised using open data kit (https://opendatakit.org/ and brunette et al. 2013) and collected on android tablet computers in each country. data were exported to a microsoft excel 2013 database. data cleaning was conducted in kenya using excel and in the philippines in ibm statistical product and service solutions version 20 for windows (armonk, ny, 2011). this step was to ensure that study identification numbers for the participants were captured correctly and were not repeated and that snowballed participants were assigned to the index participant’s cluster for analysis. instrument development the development of the survey instrument occurred in phases. firstly, the investigators sought out published instruments and 22 instruments were found. secondly, the content of the questions in the instruments was reviewed for the main themes and sub-themes. many of the existing instruments were not considered to be readily adaptable to the setting and research questions of this study within the time frame of the project. some questions used in the survey were informed by the existing instruments. these instruments include the wheelchair adapted international outcome inventory for hearing aids (borg et al. 2012); the wheelchair skills test questionnaire (kirby et al. 2016b); the wheelchair use confidence scale for manual wheelchair users (version 3.0) (rushton et al. 2013); the efficiency of assistive technology and services 6d forms (andrich et al. 1998); and life space assessment (peel et al. 2005). throughout the process, wheelchair stakeholders advised on the survey instrument development. thirdly, this study developed a conceptual framework to guide measurement (figure 1-a1; accelovate 2015). it was informed by two main published frameworks, a framework of public health intervention researchers (bryce et al. 2011) and the wheeled mobility framework of routhier et al. (2003). the study framework covered the environmental context and actors and programme inputs, outputs, outcomes and impact. fourthly, pilot testing of the instrument occurred during field visits in april 2014 in manila, philippines, and may 2014 in dar es salaam and moshi, tanzania, possible locations for the study (figure 2-a1; accelovate 2015). investigators met with organisations providing wheelchairs and services. the draft survey instrument was discussed with wheelchair organisation stakeholders and through a focus group with wheelchair users to discuss the instrument and gather feedback on the relevance of questions to their lives. after the field visits, the survey instrument questions were refined. the survey instrument asked about past receipt of the steps of wheelchair service recommended by who considered most amenable to self-reporting: assessment, fitting, training and maintenance, repair and follow-up (who 2008). the survey’s questions were related to sociodemographic and other personal characteristics, the experience and receipt of wheelchair services with the current wheelchair or any wheelchair ever received during the lifetime. the survey questions were also related to the wheelchair characteristics and acquisition. lastly, the questions inquired about the outputs of daily wheelchair use and experience of severe falls and the outcomes of high performance of adl and unassisted outdoor mobility. the survey instrument was translated into swahili in kenya and filipino in the philippines and back-translated to english. variables and analysis we collected sociodemographic, clinical and wheelchair data, specifically age, gender, county (in kenya), educational level, marital status, employment type, wealth quintile, condition that led the user to need a wheelchair, number of wheelchairs acquired in last five years, source of wheelchair and whether or not the wheelchair was donated or received at no cost to the user. the question on the type of wheelchair had response categories of ‘basic indoor chair’, ‘rough terrain wheelchair with long wheel-base’, ‘wheelchair unavailable’ and ‘don’t know’. household wealth was based on a module of standard questions from large household surveys (kenya national bureau of statistics and icf macro 2010). the survey asked whether the user received one of many services with the current wheelchair, as well as services ever received during the participant’s lifetime. in the analysis, the answer of ‘yes’ to several questions was used to create a composite or summary variable to describe assessment, fitting and training. maintenance, repair, follow-up and other services were assessed in a single item. details on creation of the service variables are presented in table 1-a1. to measure the output of daily wheelchair use, participants were asked how long they used or occupied their wheelchairs from the time they woke up to midday and from midday to the time of going to bed, to arrive at the total number of hours. responses were categorised as ‘not daily’, ‘1–7 hours daily’ and ‘≥ 8 hours daily’. this was based on the distribution of responses to the continuous variable. to measure the output of falls, the survey asked, ‘with your current wheelchair have you ever fallen?’. the next question was ‘was this a serious fall? by serious, i mean a fall that left you with pain or soreness that lasted more than one hour, bruising, skin cuts or abrasions, or injuries to your bones or joints’. this variable was analysed as a three-level variable of ‘no falls’, ‘non-serious falls’ and ‘serious falls’. to measure the outcome of unassisted outdoor mobility, three survey questions were used. users were coded as ‘yes’ on this outcome if they reached an area outside their home in a wheelchair in the last month and did not need help in doing so. those who did not have another area to go to were excluded. those who reached another area but not in a wheelchair were coded ‘no’. to measure the outcome of high performance of adl, participants were told, ‘for each activity that i read, please let me know if you perform it independently or assisted’. items were bathing, dressing, eating and toilet hygiene. response categories were ‘independently’ and ‘assisted’. if the activity was performed independently or unassisted, this variable was coded 1 and if not, 0. performance was considered ‘high’ if at least three of the four items were carried out unassisted and ‘low’ for zero-two items. analysis was carried out for each country separately and data were not combined across countries because of differences in sampling strategies and geographic coverage. descriptive results are frequencies and tabulations. in bivariate analysis, each wheelchair service variable was assessed for its association with the output or outcome. logistic regression was used for dichotomous variables yielding odds ratios (ors). multinomial logistic regression was used for three-level outcomes. these models produce relative risk ratios, which can be interpreted as ors. the models accounted for within-cluster correlation of outcomes (rogers 1993) using the ‘vce(cluster)’ option in stata software (statacorp 2013). in kenya, the organisation from which the investigators received the contact information of the wheelchair users was designated the cluster. in philippines, a neighbourhood unit called a barangay within the local government unit from which we received the contact information of the wheelchair users was designated the cluster. in both countries, ‘snowballed’ wheelchair users who were referred by another participant to the survey team were assigned the cluster of the index participant. to answer the research questions, wheelchair service items as well as participants’ sociodemographic or wheelchair user variables significantly associated with wheelchair use outputs and outcomes at p < 0.10 in the bivariate analyses were entered into multivariable models. multivariable regression models controlled for potential confounders of the relationship of wheelchair services and wheelchair outputs or outcomes. models in kenya were adjusted for number of wheelchairs acquired in the last five years, county, age category, educational level, marital status, employment type, condition that led the user to need a wheelchair, source of wheelchair, wealth quintile, whether or not the wheelchair was donated and type of wheelchair. models in philippines were adjusted for number of wheelchairs acquired in last five years, region, age category, educational level, gender, condition that led user to need a wheelchair, any employment, source of wheelchair, and whether or not the wheelchair was donated. models for performance for adl and falls were also adjusted for the three-level daily wheelchair use level. a few variables had some missing data. in kenya, between 10 and 12 respondents were missing data for age and marital status. in the philippines, the source of the wheelchair was missing for 10 respondents and for ‘current wheelchair donated’, 13 are missing. for ‘current wheelchair has a cushion’, the interviewer was unable to record this information for 60 respondents in kenya and 5 respondents in the philippines. wheelchair services significantly associated with each outcome were identified by the 95% confidence interval (ci) of the adjusted ors that did not cross 1.0. all analyses were conducted in stata 13.0 (statacorp, college station, tx). ethical consideration this study received ethical approval from the institutional review boards of johns hopkins university bloomberg school of public health in baltimore, md, united states (#5839); kenya medical research institute in nairobi, kenya (non-ssc determination #457); and university of philippines manila research ethics board (#2014-351-01). all study participants provided informed consent immediately prior to the survey participation. consent was oral in kenya, according to an approved consent script. at the request of the university of philippines, consent included participant signature. interviews were carried out in spaces allowing for audio and visual privacy. results samples achieved in kenya, after removing duplicate names from a list of 1764 wheelchair users, potentially eligible participants were 1612; of these participants, 671 could not be reached. of the 941 participants screened, 512 were eligible and 429 ineligible. of the eligible, 72 participants were unavailable. in kenya, 440 participants were included. twenty participants were younger than age 18 according to the birthdate in the survey and their data were not analysed, yielding 420 participants whose data were analysed. in the philippines, of the 1490 wheelchair user names, 575 potential participants could not be screened because they were inaccessible by phone or because they had died. of the 915 participants reached and screened, 497 were eligible and 417 ineligible because they used a non-basic wheelchair, they were younger than age 18, were unable to communicate or had received current wheelchair more than five years ago. however, this criterion was relaxed in the last month of survey data collection to reach enrolment goals. in the philippines, 56 participants were unavailable and 9 declined. overall, 432 participants were included. figure 3-a1 depicts the locations of the study participants in each country. descriptive results sample characteristics in kenya, participants were primarily men, younger than age 50 and employed (table 1). the most commonly reported conditions requiring the need for wheelchairs were spinal cord injury, polio or post-polio and congenital issues. the most common sources of the current wheelchairs were charity, government and family or friend. current wheelchair types were basic indoor wheelchairs for the majority of the sample, while others had rough-terrain wheelchairs or unknown types. for 54% of participants, the current wheelchairs had a cushion at the time of the interview. table 1: sample characteristics in kenya and the philippines. in the philippines, participants were about equally split by gender, mostly age 50 or older and unemployed, and nearly half were married or cohabiting. conditions related to the need for wheelchairs included old age, arthritis and bone problems; polio or post-polio and spinal cord injury plus old age or arthritis or bone problems, and stroke, nerveor clot-related problems. most received their wheelchairs from government, charity or family or friend. for most users, the current wheelchairs were basic indoor wheelchairs (91%) and few wheelchairs had cushions (28%). in both countries, most users received the wheelchair at no cost. because of a concerted effort to find users who received services and the expansion of eligibility criterion, 16% of the sample in the philippines had received their chair more than 5 and less than 10 years before the survey. wheelchair services received in each country, approximately 40% of the participants were classified in the service-received category according to the response to the screening question. in kenya, for the current wheelchair, a third of participants received wheelchair assessment (31%), a third of participants received wheelchair fitting (34%) and 42% were fitted while the user propelled the wheelchair (table 2). few participants received any other services with the current wheelchair. regarding services ever received in the lifetime, just over a quarter of participants received wheelchair training; similarly, 26% ever received instructions in taking care of the wheelchair; 41% reported that a provider had ever helped choose the right wheelchair. few participants had ever been told where to seek help with repairs (15%) or had ever been contacted by the provider in follow-up (15%). the question on skin problems is not reported on because of an issue with the programming of this item in the software. table 2: wheelchair services received in kenya and the philippines. in the philippines, for the current wheelchair nearly a third of participants received wheelchair assessment (31%), a quarter received wheelchair fitting (26%), and 39% were fitted while the user propelled the wheelchair. few participants (15%) reported that a provider had asked about or physically checked the user for skin problems or pressure sores; 10% were checked for unsafe seat pressure. regarding services ever received in the lifetime, 17% of participants had received wheelchair-related training, a quarter of participants received provider instructions in taking care of the wheelchair and 40% reported that a provider had ever helped choose the right wheelchair. few participants had been told where to seek help with repairs (18%) or were contacted by the provider (20%). wheelchair-related outputs and outcomes in kenya, most participants (60%) reported using the wheelchair daily for 8 h or more and 80% independently performed at least three of the four assessed adl (table 3). only 25% of participants used their wheelchairs outdoors unassisted in the past month. falls were common; 22% had ever had a serious fall, while 37% reported a non-serious fall. table 3: wheelchair use outputs and outcomes in kenya and the philippines. in the philippines, 42% of participants used their wheelchairs for 8 h or more and 16% used it 1–7 h daily. most participants (73%) independently performed at least three of four adl. a third (33%) of participants used their wheelchairs outdoors unassisted. two-thirds of filipino users had not fallen (66%). bivariate results daily wheelchair use was associated at p < 0.05 with one service variable in kenya, ‘provider ever instructed user in taking care of wheelchair’. in the philippines, daily wheelchair use was associated at p < 0.05 with 10 service variables: ‘assessment with current chair’, ‘fitting’, ‘assessment of wheelchair fit while user propelled wheelchair’, ‘provider asking or physically checking user for skin problems, sensation or pressure sores’, ‘assessment duration: < 30 minutes’, ‘training ever received’, ‘provider ever helped user choose the right wheelchair’, ‘provider ever instructed user in taking care of wheelchair’, ‘provider ever told user where to seek help with repairs’ and ‘peer group training’. in kenya, reporting at least a non-serious fall versus no falls at the bivariate level was associated with three service variables: ‘assessment duration of less than 30 minutes’, ‘provider ever helped user choose the right wheelchair’ and ‘provider ever instructed user in taking care of wheelchair’. in the philippines, reporting a non-serious fall versus no falls was associated with the same 10 service variables as for wheelchair use. high performance of adl was associated at p < 0.05 with three service variables in kenya: ‘provider assessed wheelchair fit while user propelled wheelchair’, ‘provider asked or physically checked user for skin problems, sensation or pressure sores’ and ‘training ever received’. high performance of adl was associated with nine service variables in the philippines. these were the same as for daily wheelchair use, except for ‘provider ever helped user choose the right wheelchair’. outdoor unassisted wheelchair use was associated with three service variables in kenya: ‘assessment’, ‘assessment of wheelchair fit while user propelled wheelchair’ and ‘training ever received’. in the philippines, outdoor unassisted wheelchair use was associated with the same 10 service variables as for wheelchair use. multivariable model results the wheelchair use outputs associated with wheelchair service items in multivariable models are presented in table 4. table 4: wheelchair use outputs (daily wheelchair use and falls) and services received in kenya and the philippines, adjusted odds ratios (aor) and 95% confidence intervals from multivariable regression. in kenya, one service item was associated with daily wheelchair use: the provider ever contacting the user about the wheelchair use was associated with reduced odds of daily wheelchair use (or 0.4, 95% ci 0.2, 0.9). no service item was associated with odds of falls. in the philippines, four service items were associated with daily wheelchair use. ever receiving wheelchair training was associated with 4-fold increased odds of high versus no daily use (95% ci 2.3, 7.0). a provider helping the user choose the right wheelchair ever was associated with 2.8-fold increased odds of high versus no daily use (95% ci 1.1, 6.9). however the provider of the current wheelchair asking about or checking user for skin problems, sensation or pressure sores was associated with reduced odds of high versus no daily use (or 0.5, 95% ci 0.2, 0.97). ever being instructed in taking care of wheelchair was also associated with reduced odds of high versus no daily use (95% ci 0.2, 0.91). in the philippines, four service items were associated with increased odds of falls. ever being told where to seek repairs was associated with 6.1-fold increased odds of serious versus no falls (95% ci 2.0, 18.4). longer assessment duration was associated with increased odds of serious versus no falls (95% ci 1.3, 4.5). ever receiving wheelchair training was associated with 2.5-fold increased odds of serious versus no falls (95% ci 1.4, 4.5). peer group training was associated with 2.1-fold increased odds of serious versus no falls (95% ci 1.1, 4.0). wheelchair service items associated with outcomes of high performance of adl and unassisted outdoor use in multivariable models are presented in table 5. table 5: wheelchair use outcomes (outdoor unassisted use and activities of daily living) and services received in kenya and the philippines, adjusted odds ratios (aor) and 95% confidence intervals from multivariable regression. in kenya, three service items were associated with the outcomes ever having been told where to seek repairs, was associated with 2.8-fold increased odds of unassisted outdoor use (95% ci 1.5, 5.0). two service items were associated with odds of high performance of adl. ever being trained was associated with 3.2-fold increased odds of high adl performance (95% 1.3, 8.4). having the fit of the wheelchair assessed while the user propelled the current wheelchair was associated with 2.8-fold increased odds of high performance of adl (95% ci 1.6, 5.1). in the philippines, two service items were associated with the outcomes. having the fit of the current wheelchair assessed while propelling was associated with (1) 2.4-fold increased odds of using the wheelchair outdoors unassisted (95% ci 1.5, 4.1) and (2) 2.8-fold increased odds of high adl (95% ci 1.8, 4.5), a similar finding to kenya. however, the provider doing the assessment or fitting at the wheelchair user’s home was associated with reduced odds of outdoor unassisted use (or 0.40, 95% ci 0.4, 0.9). discussion this study is one of the first to present survey findings from less resourced settings examining specific wheelchair services received and the relationship to user outcomes. documenting the effectiveness, efficiency and costs of wheelchair service and distribution programmes is an imperative for funders and programme managers to better meet client needs (harris & sprigle 2008). as governments consider how to meet the needs of wheelchair users under national insurance schemes, information on outcomes will be important in establishing coverage priorities. as recommended by harris and sprigle (2008), this study in kenya and philippines assessed unassisted outdoor mobility and independent performance of adl and falls. findings, explanations and prior research large studies with wheelchair users are rare. in this study in kenya and the philippines, wheelchair users who received and did not receive services with their current wheelchairs or in their lifetime were recruited and it was difficult to find users who had received wheelchair services. similarly, zongjie et al. (2007) found that while 75% of disabled residents in a beijing sample expressed a need for rehabilitation, only 27% had received any services. where wheelchair services are more available, users may be more often informed about or referred to rehabilitation services. the provider assessing the fit of the wheelchair while the user propelled the wheelchair was associated with greater odds of high adl performance in both countries. providers fit clients as they propel in order to determine how the wheelchair user performs certain functions in the wheelchair. when the wheelchair is tailored to the functional needs of the user, performance of adl may be facilitated. training in wheelchair use ever was positively associated with high daily wheelchair use in the philippines and performance of adl in kenya, adding to literature on the safety and effectiveness of wheelchair skills training (for instance best et al. 2005, 2016; kirby et al. 2016a; macphee et al. 2004; ozturk & ucsular 2011; routhier et al. 2012; worobey et al. 2016; tu et al. 2017). higher odds of reporting falls were associated with receipt of training in philippines. it may be that trained users had greater confidence to use their wheelchair in new places on rougher terrain or for longer distances without adequate protection and, therefore, incurred more falls. however, it is possible that the nature or dose of the training was suboptimal or the competencies achieved were inadequate. also, users may have been overconfident following training. three provider actions related to wheelchair assessment and fit were negatively associated with three outcomes in the philippines even while controlling for user characteristics, and several factors may explain this finding. firstly, in the cultural context, elderly people and people with disabilities may not be expected to be independent, the assistance of a family member or carer is expected, and using of wheelchair outdoors may be associated with stigma in the setting (tanudtanud-xavier 2013). secondly, the environmental context and limited public transport may preclude independent wheelchair mobility. thirdly, the provider’s actions may have been a response to the user’s low daily wheelchair use, outdoor wheelchair use or adl performance. in a household survey conducted in beijing, china, having received rehabilitation services was associated with a lower functional independence measure score (zongjie et al. 2007). the authors concluded that beijing residents in need of rehabilitation lacking functional independence were seeking out services to improve their situation. in our study, the user being told where to seek repairs was associated with outdoor unassisted wheelchair use in kenya and falls in philippines. outwardly oriented users may have sought out information on wheelchair repairs. in philippines, advice on how to repair wheelchairs or get spare parts may have followed chair breakdowns and falls (williams et al. 2016). possible factors related to this outcome may be fewer accessible environments and more available compatible parts and repair services. there were low levels of unassisted outdoor wheelchair use. generally, in philippines and urban kenya, many residential communities for people of limited economic means are not wheelchair accessible. communities with narrow walkways and small houses may have required wheelchair users to seek assistance from others for mobility. limitations in a cross-sectional survey, the temporal order of events cannot be confirmed and causality cannot be determined. questions referring to a past time period may be influenced by recall bias. this study’s results are not directly comparable at this time to other studies. the survey instrument was informed by existing instruments and developed for the specific goals of the study, as was done in other studies of assistive technology (borg et al. 2012). although the survey had many modules to answer key research questions and was comprehensive, certain questions in the survey had limited response possibilities. for example, the question on type of wheelchair’s response category of indoor chair does not indicate if the chair was for short-term hospital transport or intended for longer term use. the outcome of daily wheelchair use does not reflect the users’ functioning while in the wheelchair. it is not possible to know whether wheelchair falls are related to improper wheelchair use. generalisability of this study to the national populations of adult, basic wheelchair users is limited by the sampling strategy of recruiting in equal numbers users who received wheelchair services and those who did not. reported levels of wheelchair services received in this study may be different than those of the national population of wheelchair users, and this can be assessed in a national survey. recommendations for practice or programmes the study findings were disseminated back to local authorities, wheelchair user and service delivery organisation stakeholders in well-attended meetings in both the philippines and kenya, and wheelchair stakeholders were advisers to this study from the beginning. this active engagement of local wheelchair stakeholders and users led to an outpouring of ideas on how to improve policy and programmes. training in wheelchair use is related to better wheelchair use outcomes and should continue to be emphasised and delivered in an efficient and equitable manner (tu et al. 2017). opportunities should be sought to provide basic wheelchairs partly through peer group workshops, and peer group training should be evaluated (best et al. 2016). for countries that have an established and working community strategy, engaging community health volunteers can be explored as a mechanism for training wheelchair users. the provider assessing the fit of the wheelchair (e.g. using the objective version of the wheelchair skills test [kirby et al. 2016b]) while the user propelled the wheelchair should be an emphasised element of the who service package. the provision of wheelchairs and services needs to include a plan for wheelchair maintenance (toro et al. 2016) and access to spare parts. wheelchairs should be distributed with a user’s manual and a basic toolkit. local artisans can be trained to help with maintenance and repair of wheelchairs. the need for follow-up of wheelchair users and an understanding of their home context and possibility for social and economic integration is paramount, and greater emphasis should be placed on service providers advocating for independent home accessibility for wheelchair users (scovil et al. 2012. providers can also engage existing community networks to aid in follow-up of wheelchair users. prevention of falls during wheelchair use can be promoted through use of durable chairs with the appropriate weight balance (toro et al. 2016), fall-avoidance training (kirby et al. 2016b) and advocacy to change the physical environment to be more manageable to independent wheeled mobility. self-advocacy training should be added as an element of the who service package so that empowered wheelchair users can demand better quality services from service providers, and who managers training should be taken up by service managers. regarding adls, the access to safe water and sanitation affects all persons with special considerations for wheelchair users in less resourced settings (scovil et al. 2012). who should add a service element of counselling in which providers’ explore access to safe water and use of sanitation facilities as an element of activities of daily living. in the policy domain, governments should establish an evidence-based minimum service package to be delivered along with wheelchairs. wheelchairs produced locally and imports should be regulated to ensure that all wheelchairs meet specifications for less resourced areas. providers should consider the costs of wheelchair services when budgeting and should explore public–private partnerships to strengthen the delivery of wheelchairs compliant with standards from the international standards organisation. tax relief should be enacted to make a wider range of wheelchairs more affordable. governments should enforce current laws compelling public buildings and transport systems to be accessible to people with disabilities. because follow-up with wheelchair users has been largely overlooked, several approaches may be considered: enabling wheelchair provider–initiated contact by embracing ehealth and telemedicine and engaging with community health workers. it may be useful to set up a telephone hotline for wheelchair users. in romania, a toll-free telephone hotline provides information and referrals to callers on appropriate wheelchairs and services (personal communication between fundatia motivation românia staff and first author, 07 june 2016). providers can make efforts to fit every wheelchair user while the user is propelling the wheelchair. when a user is unable to propel, this may suggest difficulties with unassisted mobility and adl performance in this wheelchair in the long run. providers can discuss with clients who request or need at-home services and discuss maintenance and repair with clients. the availability of appropriate wheelchairs and spare parts is imperative at the national level. recommendations for future research it is recommended for wheelchair service organisations or contracted evaluators to collect contact information from all persons in need of wheelchairs, those who receive wheelchairs and services and their support persons and to keep this information secure and confidential. with additional contact information, service organisations can follow-up with wheelchair recipients over years to ascertain outcomes of wheelchair use and satisfaction, health and well-being, and mortality (scovil et al. 2012). a long-term study of wheelchair users’ service exposure and outcomes may need to be achieved through funding mechanisms that fall outside that of a typical international development grant period (usaid 2014). future population-based surveys of persons with disability should use validated functional measures and plan to further validate scales in the local context, as done by toro et al. (2016) in indonesia. the spinal cord independence measure may be a useful instrument (anderson et al. 2008) for persons with spinal cord injury. the wheelchair skills test questionnaire (kirby et al. 2016b) allows for measurement of wheelchair skills capacity, performance and confidence. use of craig handicap assessment recording technique short form (chart-sf) will allow for measurement of outcomes in multiple domains (whiteneck et al. 1992). wheelchair use outcomes and adl could be measured by additional means, such as user diaries about the use of different wheelchairs for different activities. medical records or visits by a study nurse to study participants could help validate reports of adverse health outcomes. wheelchair use could be measured by accelerometers or global positioning system for measurement of distance travelled or outdoor mobility (sonenblum et al. 2012). furthermore, observations by trained observers would provide additional information to understand outcomes (rispin & wee 2014). kenyan wheelchair stakeholders recommended that future research should incorporate questions targeting wheelchair users in national surveys. kenyan wheelchair stakeholders would like a study to examine the impact of service receipt on children who use wheelchairs and the costs and affordability of chairs. in addition, questions on wheelchair users can be incorporated into existing standard reporting tools used by community health volunteers of the ministry of health. stakeholders in the philippines recommended creating a central repository data from various studies involving wheelchair users. it was emphasised that wheelchair users be involved in all phases of research. it is important to evaluate service delivery models as done by toro et al. (2016). conclusion in a two-country survey of over 800 adult basic wheelchair users, select services that were associated with some better wheelchair use outputs and outcomes should be emphasised in service delivery. specifically, assessing the fit of the wheelchair while the user propelled the chair and training in wheelchair use are services associated with positive wheelchair use outcomes. serious falls may be an unintended consequence of increased mobility. efforts to provide wheelchairs and services need to include plans for wheelchair maintenance and repair and follow-up with wheelchair recipients. acknowledgements the authors would like to thank jhpiego staff deepti tanuku, accelovate director, and staff in kenya and the philippines, including dr bernabe marinduque. the authors are grateful to the institute for health policy and development studies, university of philippines manila, for leading the philippines data collection and to the surveyors in both countries. this research would not have been possible without the many devoted representatives of organisations in kenya and of local government units and barangays in the philippines who helped the authors reach the wheelchair users. finally, the authors express their gratitude to the more than 800 wheelchair users who were participants in this study, as well as the caregivers who supported their participation. the authors thank mr peter mbuguah for advice on study location and comments on the article. this study was made possible through the generous support of the american people through the us agency for international development (usaid), under the terms of the technologies for health award aid-oaa-a-11-00050. the contents are the responsibility of the authors and do not necessarily reflect the views of usaid or the us government. the research was carried out by jhpiego’s accelovate programme, whose goal is increasing the availability and use of life-saving innovations for low-resource settings. the funder was involved by receiving monthly updates from the research team, offering guidance and global knowledge of wheelchair service programmes and approving yearly work plans. the funder was not involved in data collection, analysis, interpretation or writing of the study report or the manuscript. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions e.s.b. was the principal investigator of the study and was involved in all phases of the research from inception, led the analysis and was lead writer of this article. e.j.h.h. was involved in all phases of research from inception, participating in the study design, the oversight of data collection teams and the interpretation of findings. b.n.o. participated in all phases of the study from the study design, coordination of the study in kenya, interpretation of findings and helped draft the manuscript. e.k.w. participated in the study design and implementation and helped draft the manuscript. j.h.n participated in all phases of the study from inception, study design and interpretation of findings. c.a.x. was the technical coordinator for the study in the philippines and participated in the acquisition of data, analysis, interpretation and dissemination of findings to stakeholders. f.d.s.g. helped in the acquisition of data and participated in the analysis and interpretation of the data. a.g. was responsible for achieving project objectives in kenya including overall direction, including oversight over local dissemination of the results to stakeholders and contributed intellectual inputs to the manuscript. m.g. provided input on the policy implications of the research findings and added inputs to the manuscript. p.m. participated in the research consultative meeting and provided inputs on the policy implications of the research findings. r.l.k. participated in the study design, the 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medicine & rehabilitation 91, 463–469. https://doi.org/10.1097/phm.0b013e31825ab5ec xiang, h., chany, a.-m. & smith, g.a., 2006, ‘wheelchair related injuries treated in us emergency departments’, injury prevention 12, 8–11. https://doi.org/10.1136/ip.2005.010033 zongjie, y., hong, d., zhongxin, x. & hui, x., 2007, ‘a research study into the requirements of disabled residents for rehabilitation services in beijing’, disability and rehabilitation 29(10), 825–833. https://doi.org/10.1080/09638280600919657 appendix 1 table 1-a1: description of variables. figure 1-a1: wheelchair services conceptual framework, accelovate project. figure 2-a1: distribution of the samples by country and geography. figure 3-a1: distribution of the samples by country and geography. abstract introduction research methods and design results discussion contributions and implications conclusion acknowledgements references about the author(s) precious muzite department of educational foundations, college of education, university of south africa, pretoria, south africa velisiwe gasa department of educational foundations, college of education, university of south africa, pretoria, south africa citation muzite, p. & gasa, v., 2024, ‘experiences of students with disabilities in technical vocational education and training colleges’, african journal of disability 13(0), a1477. https://doi.org/10.4102/ajod.v13i0.1477 note: the article is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa,’ under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research experiences of students with disabilities in technical vocational education and training colleges precious muzite, velisiwe gasa received: 17 may 2024; accepted: 30 sept. 2024; published: 27 nov. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: technical vocational education and training (tvet) in south africa is often viewed as the ‘cinderella’ of higher education, with many matriculating students choosing mainstream universities instead. this preference stems from stigma and misconceptions that label tvet students – often from poorer working-class backgrounds – as less intelligent than their university peers. the lived experiences of students with physical and learning disabilities in these institutions are particularly underexplored. objectives: this study aimed to illuminate the experiences of students with disabilities at five tvet colleges in gauteng, south africa. method: using a phenomenological approach, the study conducted story exercises and individual interviews with a convenience sample of 40 students with disabilities. results: the findings reveal that tvet education predominantly serves black students from marginalised backgrounds, with students with disabilities facing significant barriers in accessing both the curriculum and the physical environments of the colleges. despite numerous challenges, a resilient narrative emerged among these students, rooted in african traditional values. conclusion: this article contributes to knowledge on disability inclusion in higher education by showcasing the challenges and resilience of students with disabilities in south africa’s tvet system. contribution: the study employed innovative methodologies, such as picture stories, to co-create knowledge with students living with disabilities. keywords: students with disabilities; physical disabilities; learning disabilities; technical vocational education and training (tvet); decolonial theory; evidence-based resources (ebrs); evidence-based action. introduction the main characters in this article are students with disabilities who attend five technical vocational education and training (tvet) colleges in the gauteng province of south africa. these students want to be a part of the transformation process, which has been linked to discussions about how higher education institutions from the global south should look in an advanced new world order (de sousa santos 2018; mbembe 2016; ndlovu gatsheni 2013). the article uses a decolonial lens in disability research in education to contextualise the experiences of the students with disabilities enrolled in tvet colleges in south africa. decoloniality is a liberating process that has gained popularity in critical race, ethnicity and education politics (grosfoguel 2004; mbembe 2016). scholars such as meekosha (2011) have raised concerns about how disability studies in the education context were previously excluded from the decolonisation process, with most writings on disability coming from ‘western’ countries. most importantly, the stories of students with disabilities in south african tvet colleges have been left out of the transformation process and the way higher education institutions in the global south are represented. most of the existing literature has failed to explore disability inclusion by connecting evidence-informed research with evidence-based action. this therefore sets out a research niche that this study aims to explore. in addition to critically unpacking the lived experiences of the students with disabilities at tvet colleges using an indigenous lens, this study also set out to provide recommendations towards promoting disability inclusion through evidence-informed action. this article is based on our ongoing postdoctoral research, which looks at the experiences of students with physical and learning disabilities who were enrolled in five tvet institutions within the context of south africa. technical vocational education training falls under the department of higher education and training (dhet) and focusses on vocational and occupational education and training to prepare students to become functional workers in a skilled trade. universities require students to have a bachelor’s degree at the matriculation level, while tvet colleges accept those who have passed grades 9, 10, 11 or 12. some colleges offer up to 300 different courses. these include the national certificate (vocational), nated/report 191 and nqf full time and learnerships. according to the dhet website (2017), there are 50 registered and accredited public tvet colleges in south africa, which operate on more than 264 campuses spread across the rural and urban areas of the country. the ‘context’ section is going to look at the context around inclusive practises in tvet settings and evidence-based resources (ebrs). context the curriculum of tvet colleges is considerably different from that of mainstream universities in south africa in the sense that tvet colleges are mostly modelled within a model two education system, as described by dworzanowski and chagonda (2006) in their study of postgraduate studies at the university of johannesburg. model two systems have been hailed as exceptional as they seek to marry theoretical frameworks with the notion of integrated learning and training. this model is ‘intrinsically trans-disciplinary, trans-institutional and heterogeneous’ (dworzanowski & chagonda 2006:2). integrated learning in tvet colleges commonly fuses theoretical frameworks with the practical part of learning that originally came with an apprenticeship. apprenticeship is largely absent in model one frameworks, which are a characteristic of many mainstream universities. thus, part of the reason tvet colleges have been appealing is their capacity to provide students with the necessary integrated learning in fields such as engineering, boiler making, vocational training and artisanship, manufacturing and technology, services, building construction and security. these fields have been identified by the south african government as critical sectors in the country’s economy. there has been an increase in the demand for ebrs in research in the social sciences (animasahun et al. 2021). this is particularly true in emancipatory research, which is research aimed at improving the health and livelihoods of marginalised identities. evidence-based resources are defined as ‘published (multidisciplinary) reviews of intervention evaluations and studies [aimed at] improving health that have evidence of effectiveness, feasibility, reach, sustainability, and transferability’ (us department of health and human services 2010). common types that have been used are the systematic-based resources used for interventions engaging community health workers in breast cancer (hong et al. 2021) and the non-systematic reviews used scientific evidence briefs, such as those from the national academies of science, medicine and engineering in the united states of america. in africa, ebrs have greatly been used in medical fraternities, for example, a systemic evidence-based surgery for trainees of the college of surgeons of east, central and southern africa (animasahun et al. 2021). few studies have carried out systemic literature reviews of both international and local published materials, commissioned research, government policy and related official documents and anecdotal evidence-based disability research to influence positive changes in their lives (mmatli 2009). literature review current literature on disability inclusion in post-secondary training has focussed on five main pillars, that is universal design for learning (udl) (ferguson et al. 2019), inclusive education and postsecondary outcomes (hughson & uditsky 2018), barriers and facilitators (taff & clifton 2022), technology and assistive tools (lyner-cleophas 2019) and community and social inclusion (gidley et al. 2010). universal design for learning emphasises creating educational environments that accommodate all learners, including those with disabilities (ferguson et al. 2019). the same study also found that udl involves flexible teaching methods, materials and assessments to support diverse learning needs. lee and taylor’s (2022) research indicates that inclusive education positively impacts postsecondary outcomes for students with intellectual and developmental disabilities (idd). studies show that inclusive education correlates with better employment and educational outcomes (ndlovu & walton 2016) a systematic review identified various barriers and facilitators to disability disclosure and accommodations in post-secondary education. key barriers include stigma and lack of awareness, while facilitators include supportive policies and accessible resources (lindsay et al. 2018). numerous books and articles have been written about learning and inclusion scholarships in southern african higher education institutions (chataika 2009; bell 2011; matshedisho 2018). however, most of these studies have referred to traditional universities when they refer to ‘higher education institutions’. an analysis of research on southern african inclusive pedagogies by powell and mcgrath (2013) in higher education institutions reveals conflicts and some unresolved problems. while most doctoral and master’s researchers scramble for research on traditional universities, there appears to be a tacit understanding among academic researchers that research on tvet colleges is not sufficiently ‘academic’ to merit the effort (powell & mcgrath 2013). there is therefore a demand for research that prioritises tvet colleges and most importantly, the inclusion of students with disabilities in these institutions. the ‘theoretical framework’ section will unpack why this study’s indigenous epistemology was imperative. theoretical framework this study is thought to be particularly unique in that it applies the decolonial theory to a disability study. to fully appreciate the significance of the voice of people with disabilities, decolonial theory may also offer a crucial extension of critical disability theory. it is acknowledged that people without disabilities have been speaking for and misrepresenting people with disabilities and that people with disabilities should have a voice because they have lived experience of disabilities (devlin & pothier 2006; hosking 2008). under the framework established by decolonial theory, anecdotal evidence and personal experience are valued and serve as crucial tools for appreciating the differing perspectives of diverse, plural and unique individuals (ndlovu-gatsheni 2013). such a theory also emphasises the need to give everyone a voice and the usefulness of all knowledge (ndlovu-gatsheni 2013). because decolonial theory makes it possible to identify the underlying causes of certain problems faced by students with disabilities and offers solutions, the current study may be able to provide both an empirical and theoretical contribution. research methods and design a phenomenological research methodology was used in this study, drawing upon five selected case studies of tvet colleges and campuses around johannesburg. individual semi-structured interviews were carried out with 40 youths with a broad range of disabilities (physical and learning) across five tvet colleges in gauteng province, south africa. convenient sampling was used in this research using referencing and snowballing techniques from johannesburg’s five biggest tvet colleges. in addition, five focus groups with various stakeholders involved in the tvet colleges such as the students with various physical and learning disabilities, the staff working at the student support units, lectures, campus managers and government workers working for the dhet. the phenomenological methodology prioritised the voices of the students with physical and learning disabilities studying at the tvet colleges who were given co-researcher status. this resonates with current debates in disability studies on the need to co-create knowledge with participants living with disabilities throughout the research process (chappell & de beer 2018; charlton 1998). perhaps the highlight of the phenomenological methodology used in this study was the story exercise developed by the researchers together with the students who chose to partake in the study. the ‘story exercise was originally designed by rooth (1995) as an adaptation of the participant rural appraisal (pra) techniques first used with disenfranchised groups such as agricultural workers in the united kingdom as part of a social justice initiative of facilitating the growth of their urgency. the 40 students with disabilities were given the option of participating in a story exercise in which they could narrate their daily activities in various formats, such as voice notes, written notes and picture stories. twenty of the 40 youths who took part in this study agreed to participate in the story exercise. the 20 young people (from various colleges) who chose to take part in the story exercise were given a blank journal book to fill with pictures, stories, memes and images from magazines, newspapers and social media that best represented their experiences at tvet colleges. the youths were also given a lot of leeway to create stories in whatever format best suited to their abilities, such as pasting pictures, voice notes, drawings, poems, visual arts or simply writing short narratives in handwriting or braille. the exercises recognise depictions of inclusion, exclusion and disclusion. while the concepts of inclusion and exclusion refer to the clear acts of adding in or leaving out certain groups of people from certain activities, the term disclusion is not so definitive, and it implies when one is neither included nor excluded, a state of precarity when one is expected to be gracious for barely being there on the margins (moonsamy & walton 2015). these dynamics occur in everyday interactions and media representations such as newspapers, magazines, social media and television rather than school textbooks and academic journals. the idea is that everyday interactions and incidents in lecture rooms at various tvet colleges (captured in individual stories) painted larger real-life representations of students with disabilities in tvet educational settings. the ‘data analysis’ section will describe how the data were analysed. data analysis the researchers sat down with the students who participated to get a subjective interpretation of the picture stories. then they transcribed and analysed the stories further, weighing down on a decolonial lens of disability. thematic analysis was then used to break down the analysed data, first into small themes and later merging these into bigger themes (clarke & braun 2017). the ‘ethical considerations’ sections will explore the ethical considerations as well as critically explore the seminal themes that came out of the picture story exercise. ethical considerations ethical clearance to conduct this study was obtained from the university of south africa college of education ethics review committee (no. 2023/05/10/90525558/19/am). signed informed consent was sought from every participant in the interviews, focus groups, story and picture exercises and formal approval letters to conduct research were obtained from the college campuses involved in the study. there was also the use of pseudonyms to protect the confidentiality of participants. the ‘results’ section will focus on the findings. results from the 40 students involved in the larger study, 20 students chose to partake in the story exercise and were interviewed to get seminal representations of disability. we then sat down to analyse these self-representations, weighing them against a decolonial lens of disability mentioned earlier in the article. for the sake of this article, we are going to showcase (with the participant’s consent) five of the most memorable stories that came up in the research. we will begin by outlining a small biography for each storyteller and, subsequently, offer a critical analysis of the different stories each participant brought forth. yolanda (albinism) yolanda is a 20-year-old xhosa woman with albinism. she is a business management student at a tvet college in central johannesburg. she is from humphrey in the eastern cape and describes herself as ‘authentic, artistic, and open’. she chose poetry (some of which she wrote herself) and images from various social media platforms such as facebook, twitter, instagram and tiktok to represent her stories (with permission from the owners). here is one of the memorable pictures that she chose to represent her lived experience with albinism in her tvet (figure 1). figure 1: yolanda’s picture story. she used this striking picture to tell her story titled ‘weeping may endure for a night, but joy comes in the morning’. the title of the picture is an extract from ps 30 vs. 5 in the bible. one hand is covering one of her eyes, symbolising the concealment of disability by the ableist members of society. society, when confronted with representations of bodily difference such as albinism, reverts to aversion and concealment of the other fearing what it does not understand. that anomaly should therefore be avoided. one hand is also covering her mouth, symbolising and silencing the other as a form of passive oppression. the hands groping the woman are black, and they stand in contrast to her skin although she is also black. this highlights the plight of the exclusion of people with albinism from their black identity because of skin colour. she narrates a grim story of a girl with albinism who was murdered for ritual purposes, betrayed by people she had trusted: ‘i heard something last year on the news. someone (living with albinism) was walking with her boyfriend in kwazulu natal province, and they told the boyfriend to give them the girl and they would give him money. they found her dead the next day’ [yolanda’s interview]. such exclusion is multi-layered as one is already marginalised for being black and, in addition, for not looking black. lebo’s story (learning disability) lebogang is a 24-year-old student in her second year of studies for a diploma in educare. she is originally from makhado, a small town in the south african province of limpopo. she has dysgraphia, a learning disability that is characterised by impaired writing, which in turn may interfere with learning to spell words in writing and the speed of writing texts. she was diagnosed late in her teens when she was in grade 10. her preferred form of storytelling was the use of voice memos and pictures, as she describes herself as having severe challenges with reading and writing. here is her picture story (figure 2). figure 2: ‘makhado village life’ (lebo’s picture story). the picture is a representation of lebo’s home in the mountains of makhado. she spent most of her childhood and teenage years in this place, and she describes it as peaceful and a breath of fresh air (comparing it to the hustle and buzz of johannesburg city life). for lebo, having a learning disability comes more deeply rooted in her african spirituality than in medicalised or socialised discourses. she explains that the circular thatched mud huts have spiritual meaning for her. the circle shapes of the thatched roof are not only symbolic of africa’s architectural ingenuity. they are spiritual safe houses that offer wisdom and refuge to residents and sometimes even strangers. lebo loves her childhood home. it is her safe space where she is not bound by any disability labels that threaten to define her. she explains that she often gets misunderstood by her peers and lecturers and her disability is often misinterpreted as sickness, laziness and dullness. she explains that most students shy away from her thinking that her learning difficulties are clinically contagious and can rub onto them as she retorts, ‘other students feel the need to stay away from me thinking my disability can rub onto them, but my learning disability is not contagious!’ (lebo’s voice note). lebo strongly feels that her learning disability instead has a strong african spiritual root. her slow learning condition had long been consulted with a local sangoma (traditional healer) when she was younger. the sangoma had attributed her inability to learn the westernised curriculum at her school to a spiritual calling by the vhadzimu (ancestors). she needed to heed their calling by performing certain rituals and taking the path of being a sangoma. an interesting dynamic that played out to further isolate her from her peers is the issue of language and ethnicity. she can only speak her home village language, venda. this makes her a target of bullying from other students who are mostly local and therefore can speak the local dominant languages, such as isizulu and sesotho. her learning disability, language and dress code pass her easily as eccentric among other students. lebo’s story does not end here. she expresses how she has learnt to channel her spiritual energy and her humble upbringing to focus on finishing her college diploma in educare. she intends to start her preschool after graduating and possibly give back to the family and community that raised her. she later goes on to pass a subject that is considered difficult for students with learning disabilities and by doing so, immediately challenges the narrative that society has constructed around learning disabilities. she begins to command some respect from her peers (some of whom failed the course), and most importantly, she begins to embrace some self-advocacy in her abilities. she was finally on her way to realising her dreams. khensani (dyslexia) khensani is a 29-year-old mother of two girls enrolled for a second year, diploma in developmental educare. she lives with her husband in protea south (soweto), and she describes him as a loving and supportive father who works full-time while she is studying full-time. she is dyslexic, which creates challenges in reading and writing. her dyslexia is so severe that she describes experiencing intense anxiety every time she has to explain something in front of the class in the lecture rooms. some parallels can be drawn from khensani and lebo’s experiences with learning disabilities. she received a late diagnosis for her disability (only when she was 25), even though her learning problems started early in her childhood (when she was 2 years old). she cites a lack of awareness around learning disabilities, especially in marginalised communities. she uses a picture story and voice notes to narrate her journey (figure 3). figure 3: ubizo (the calling) khensani’s picture story. the picture in khansani’s storybook is of a woman dressed in traditional regalia and standing at a waterfall. she explains that it represents her when she was at a ukuthwasa (a traditional initiation process for someone to become a sangoma (traditional healer). for khensani, similar to lebo, her reading and writing problems have a spiritual basis. her family believed that she had an ancestral calling (ubizo) to become a sangoma (traditional healer). ideally, she should have gone through an initiation process (ukuthwasa) a long time ago to connect her to the ancestral world so that she can connect with her healing gift. unfortunately, khenzani did not heed this calling for a long time, and this became a basis for her learning challenges. she only accepted the calling when she got registered at the college and found out that she was not coping with her studies. isaac (locomotor disability) isaac is a 28-year-old student who at the time of the interview was studying for a diploma in human resources. he lost both legs after a horrific train accident when he was in grade 10. he now uses a manual wheelchair. the incident left him depressed as he perceived a loss of independence at first using the wheelchair. however, with time, he got used to it and now describes himself as outgoing and free. he, however, faced many physical built environment accessibility challenges as the tvet college he was attending was not accessible for someone with physical disabilities, especially wheelchair users. for example, the whole college only had one wheelchair ramp, and he often had to rely on other students to carry him when he needed to go up a flight of stairs. he also faced a lot of challenges with accessing public transport as he was staying off-campus, and his picture story narratives and written journal narratives often allude to all these challenges. he also expressed that he initially wanted to study electrical engineering at the tvet he was enrolled at, but because the college has not made reasonable accommodations for students with disabilities, he was forced to make amendments and had to settle for a diploma in human resources. he uses the following picture, which showcases the only wheelchair ramp that is on his campus (figure 4). figure 4: ‘ramp to hell’ (isaac’s picture story). the picture (taken by isaac on his mobile phone) is titled ‘ramp to hell’. isaac showcases the lack of reasonable accommodation for students with physical disabilities on his college campus. the picture shows a wheelchair ramp that is not only dangerously steep but has also been overrun by bushes. this made it not only difficult but dangerous for a wheelchair user to navigate the college campus. the title of the image is a metaphor for a world filled with ambiguity, as isaac explains. the rugged ramp, which should have been easing navigation, now adversely acts as an impediment. james (deaf) james is a 23-year-old student studying for a diploma in administration. he identifies with the deaf (d) culture. he describes himself as a lover of jokes and respects people. he stays in kleroff, a township in johannesburg, but he is originally from the suburbs of florida in johannesburg. his family moved about 15 years ago because of financial strain when his father lost his job. he describes himself as constantly struggling to fit into his new environment, which is plagued with high rates of crime, alcohol and drug abuse. james chose to use a picture story to narrate his lived experience at the tvet college where he was enrolled. the first pictures he chose are titled ‘henry’s hiccups’ (figure 5) and ‘sign languages as an official language’ (figure 6). figure 5: ‘henry’s hiccups’. figure 6: ‘sign language as an official language’. the two pictures consolidate south african sign language not only as an official 12th national language but also as a whole cultural identity. the first, titled henry’s hiccups, is extracted by james from a fictional juvenile book series by barrett, pantoja and etulu (2021). the book series is centred around henry, who is a happy student until he encounters a hiccup problem in class. he fails to find a remedy, and the hiccups keep getting in his way of communicating with his teacher. he figures out a way of communicating in class using sign language. he began to slowly enjoy the experience of using sign language so much that it became the norm for communicating with his teacher. james’ picture stories bring some very critical perspectives towards deaf identity among students at tvet colleges in south africa. firstly, it shows that deaf students can assume a culturally hearing identity in sign language through collective stigmatisation by the powerful other (bat-chava 2000) (figure 6). secondly, it shows that sign language can be taught to young children, and it is possible to normalise it being used as a medium of instruction at any institution of learning in south africa. thirdly, as james explains, ‘the pictures also show that everyone can fit into the deaf culture, irrespective of whether they are deaf or not’. hence, henry could learn how to use sign language and feel a close attachment to deaf culture without being deaf. these findings are like those in moroe and de andrade’s (2018) research, which found that hearing children of deaf parents are raised in ‘unique and extraordinary family settings, which makes them culturally deaf (d) yet functionally hearing’ (p. 1). this highlights that a sense of deaf identity and culture can be constructed at all tvet colleges. discussion the aforementioned picture stories depict the subjectivity of disability experience among students attending tvet colleges in south africa. the study showcased how the experiences of students with disabilities at tvet colleges are shaped around the different types of disabilities, that is physical and learning disabilities. for students with physical disabilities, the students’ narratives were centred around a disabling gaze that was often reserved for non-normative bodies (singer 2012). for example, with yolanda, the picture she used is a metaphor and tells her life story of battling against the ableist society that is constantly acting out to mute and conceal her talent and beauty as a person with albinism. she is a part-time model, and she explains how she is constantly wary of the pathologisation gaze whenever she steps on the catwalk or the college campus. to her, society is often shocked that a person with albinism can also be beautiful, intelligent and a successful model. she is often bombarded with praise for her strong confidence and how her skin is blemish-free ‘unlike other people with albinism’ (yolanda, picture story narration), and such incidences could be said to be reinforcing the concept of inspiration porn. the term inspiration porn was made popular by australian disability activist and comedian stella young (2014). it refers to controversial representations of disability as a disadvantage and tragedy that can be overcome, often for the gratification of an able-bodied audience (grue 2016). seen in this light, in the case of yolanda, inspiration porn could be said to be manifesting itself in the form of objectifying and sexualising her, and she is often left uncomfortable. furthermore, closely linked to the clinical gaze is the act of concealment and looking away. yolanda narrates how other sponsors of her brand sometimes look away when she is modelling because her colourlessness represents bodily differences outside of the norm in the modelling industry. however, as the title of the picture suggests, this is just the beginning of her narrative. in the picture, the girl is also clutching at the intruders’ arms in defiance. she is not passive or hopeless and she is fighting back. similarly, yolanda describes herself as constantly fighting to control her narrative set against the ableist college environment and world. most students with albinism in the study demonstrated a high level of agency, creativity, autonomy and motivation to improve their lives, only becoming debilitated through discrimination by the ableist society (kiishweko 2017). for yolanda, being the only student with albinism on her college campus came with its perks of being celebrated as exotic and interesting on campus. on the first day on campus, everyone wanted to be her friend, and she felt genuinely welcomed by the whole college. however, this turned out to be a double-edged form of appreciation as she soon found out about the killings of people with albinism that were occurring in her community. in this instance, the exclusion is symbolised through the cultural representation of witchcraft and superstition surrounding people living with albinism in sub-saharan africa (mulemi & ndolo:2014). for yolanda, the image of tvets as safe havens for people with albinism is distorted by the infiltration of the bio-cultural exclusion on her campus. she is haunted by the images of people like her on social media platforms who disappear, targeted by ritual killings or the desecrated images of graves exhumed to extract umuthi (magical portions). the difference and stigma that come for students with physical disabilities such as albinism in south africa, therefore, transcend the body and the tvet campuses to merge into a more vicious form of genocide, a threat to a whole civilisation and cultural identity of people who have been labelled the other, simply by the colour of their skin. ignorance and suspicion the experiences of studying at a tvet college for students with learning disabilities are on the other spectrum surrounded by an air of ignorance and suspicion from an ableist society. such suspicion evolves around the medical discourses of contamination as in the case of lebo and khensani. there is also a cultural and spiritual element attached to learning disabilities, whereby spiritual unfulfillment is associated with difficulties in learning. however, such challenges in learning and life in general because of unfulfilled ancestral callings are not unusual in a southern african context. it is often a well-known belief in african culture that it is taboo for a person to deviate from their ancestral calling. it is also a well-known belief that a person can also have unexplained mental illness, and nothing will work out for them until a time they choose to reconcile with their ancestors’ wishes. for example, bakow and low (2018) posited that ancestral calling has been compared to western mental health constructs, such as psychosis because of the accompanying symptoms. khensani, later, gave updates on her experiences with a learning disability since she had the ukuthwasa initiation. she said she gained a lot of self-confidence in dealing with her learning disability. part of the reason that she faced intense anxieties around other people at the college before she got initiated was that she lacked a sense of cultural identity and a spiritual sense of purpose in life. now that she is a sangoma, she has learnt to channel her spirituality to connect and control her learning anxieties. the idea of using african traditional thought and culture in conceptualising and dealing with disabilities is not a new one. it falls in line with african traditional theoretical frameworks such as the ubuntu philosophy. scholars such as menkiti (2017) and gumbo, gasa and knaus (2022) continually advocate for an african cultural sense that is a whole way of life and that can be used to construct and reconstruct how african people conceptualise and adjust to university life. spirituality is the medium of that culture that helps khensani and lebo to deal with their learning disabilities. compulsory able-bodiedness the study also exposed how the notion of integrated learning in public tvet colleges still resides in an ableist, misogynistic and hetero-normative notion of society that still largely perceives an engineer or a technology expert as someone able-bodied and male. this is highlighted by isaac’s story of having to change his career path because of a lack of reasonable accommodation in some of the curricula at his college. article 2 of the un convention on the rights of persons with disabilities (2006) defines reasonable accommodation as: necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms. (p. 2) concerning the right to education, reasonable accommodation means ensuring the specific support needs of students with disabilities are provided so that they can equitably participate in learning alongside their peers, which was unfortunately not the case with isaac. he explains that: ‘they (student support officials) advised me to make registration amendments and chose a different diploma because electrical engineering did not offer reasonable accommodation for someone in a wheelchair. they said i am the first student at the college who was using a wheelchair and wanted to do engineering so they were making amendments to the curriculum so that it can accommodate someone like me!.’ (isaac’s interview) compulsory able-bodiedness (mcruer 2006) involves the essentialist assumption that an able body is the one that is considered ‘normal’ and what garland-thomson (1997) refers to as the ‘normative body’. inahara (2009) unpacks further and states that ‘it implies that all human beings are represented by only one body, which is able’ (p. 47). we argue that compulsory able-bodiedness is a problematic social construct in tvet settings because it erroneously expects every student who enrols in public tvet colleges to be able-bodied and heterosexual if they are to be accepted by the curriculum and society as ‘normal’ and be able to handle the training and apprenticeship aspects. disability through the lens of intersectionality based on the findings, it could be argued that a critical lens is needed that examines the intersections of race, class, gender, sex and masculinity in disability. some critical disability studies scholars (see goodley 2011; sherry 2016) have argued that disability should be understood in the context of other multiple identities and should also be placed at the centre of them. in this study, the theme of intersectionality played out when examining the demographics of the students who participated. the 40 students with disabilities who participated in the overall study were predominantly of african, mixed race and indian heritage. this racial disparity is not by coincidence. to understand the current situation of adolescents and young people with disabilities in public tvet colleges in south africa, one needs to gain insight into a comprehensive historical overview of tvet education in south africa as a legacy of colonialism, apartheid and capitalism (masuku & hlela 2023). there was a need for cheap labour under the apartheid system and vocational education was considered the first education to be received by africans from the colonists, especially from the british model (masuku & hlela 2023). this legacy has persisted long after apartheid as tvet education is still viewed as black as highlighted by the demographics of the students in this study. this means that disability experience of the students at tvet colleges cannot be understood outside other identities because there is always an intersecting orientation and belonging to a particular class or race by persons with disabilities. thus, disability might not be understood in isolation from those other identities. sherry (2016) further argued that disability should be understood as ever-changing and fluid, shared by people with and without disabilities. what sherry (2016) meant can be understood from other scholars’ different perspectives of understanding disability. for example, puar (2015) stated that ‘you are able-bodied until you are disabled’ (p. 149). that implies the fluidity of disability; that there is a thin line between those with and without disabilities because the former could also be disabled in one defining moment. thus, disability should be understood as a continuum rather than a binary of able or disabled. people with disabilities are not to be viewed as a group on their own with special needs but as ‘diver-sea-ty’ (steyn 2011), among other diversities in people with and without disabilities. as goodley (2011) points out, ‘disability should be seen as a springboard: space from which to think through a host of political and theoretical issues that apply to all identities’(p. 185). in the context of this research, understanding intersectional disability identity will help to understand students with disabilities learning at tvet colleges as an integral part of the diverse student body in higher learning. the ‘contributions and implications’ section offers the contributions of the study towards an evidence-based framework for promoting disability equity for indigenous populations. contributions and implications firstly, the article has added new knowledge in the field of disability inclusion in higher education especially in relation to previous/existing scholarly literature on the south african tvet sector. there are few, if any tvet studies that have employed a unique methodology such as the pictures story used by the authors that emphasises the co-creation of knowledge with disabled students’ participants using images. secondly, this research also makes recommendations for evidence-informed action plans aimed at promoting disability inclusion in tvet colleges from the global south to make use of participatory research methodologies with indigenous peoples. participatory research with indigenous peoples ‘prizes partnership between individuals (and/or the groups they represent) who have a stake in the research, including (but not limited to) indigenous peoples and researchers’ (dadich, moore & eapen 2019). this partnership involves equal opportunities for engagement between different individuals. participatory research with indigenous peoples is recommended for a better understanding of public health. collaborating with indigenous communities requires clear evidence of active participation and equal ownership of research. in summary, promoting equity, cultural safety and contextually tailored care are essential for improving health services for indigenous populations. while specific resources related to disability inclusion in tvet colleges may be scarce, these principles can guide future research and policy efforts. thirdly, evidence-informed action plans aimed at promoting disability inclusion in tvet colleges from the global south should be guided and informed by indigenous knowledge systems (iks). the concept of iks emphasises the importance of traditional knowledge held by indigenous communities. while not directly related to disability inclusion, it highlights the value of incorporating indigenous perspectives in research and policy. limitations the applicability of iks to the inclusion debates comes with its share of challenges and hurdles. there have been sceptics who have criticised the ‘return’ narrative of indigenous epistemologies such as ubuntu as frivolous and no longer applying to south africa and most countries from the global south (matolino & kwindingwi 2013). these scholars equally doubt ubuntu’s validity and global applicability in producing western equivalents. simply put, these critics doubt if indigenous knowledge can be used to explain contemporary phenomena as it is outdated, tumulous and dying (matolino & kwindingwi 2013). major arguments put forth by these scholars are that indigenous knowledge faces a formidable foe in the form of capitalism, which they feel is deeply rooted even in the so-called communist countries that it would be a next-to-impossible fit to try to outlaw it. in addition, iks such as ubuntu are also deeply inclined towards the conceptual, leaving little room for applicability – and sometimes even breeding tension and conflict. a case in point is the high incidence of hate crimes, organised crimes and xenophobic attacks in south africa, which have been used conveniently as a measure of the limitations and failures of iks (koenane & olatunji 2017). similarly, practices such as the killings of people living with albinism in sub-saharan africa have been used to discredit iks when it comes to how communities deal with persons with disabilities. however, proponents of iks such as koenane and olatunji (2017) point out that ubuntu philosophy is not dying but is birthing into a theory with ‘greater prominence than other rival theories’ (p. 265). this is because ubuntu is an authentically african belief system that has managed to morph well with different sub-cultures across the continent. the authors give the example of nyerere’s ujamaa in tanzania, ubuntu in south africa, unhu/ubuntu in zimbabwe, umuchinshi in zambia, botho in botswana and the gada philosophy among the oromo people in ethiopia as all successful variants of iks. to simply discredit african indigenous knowledge based on a few incidents is to automatically nullify ‘all strong theories and systems of today that have evolved through debates, suggestions, criticisms and contributions, not by ceasing to discuss and challenge them’ (koenane & olatunji 2017:266). conclusion these are narratives of the students and many more that could not be added because of the limitations of time on this study. they should make society, lecturers, management, researchers and academics working in the tvet space reimagine and rethink their day-to-day interactions with various disabilities. most importantly, these narratives forewarn and challenge disability inclusion scholars in education to be wary of dominant epistemologies of disability representations – that often act out to reinforce troublesome stereotypes that have been associated with people living and learning with disabilities in tvet colleges. from a decolonial perspective, the experiences of having a disability while studying at tvet colleges are clouded by issues of poor access to the architectural landscape and curriculum of colleges by students with disabilities the majority are also black. this brings out the issue of the intersectionality of disability – whereby the experiences of marginalised identities who are living with a disability are not necessarily the same with other ethnic groups. acknowledgements the authors extend special acknowledgements to all the students and the staff at the tvet colleges involved in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors were actively involved in the conceptualisation, data collection, analysis and final write-up of the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available on reasonable request from the corresponding author, p.m. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of 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shumba, j. & akinyemi, a., 2017, ‘adaptation of the curriculum for the inclusion of learners with special education needs in selected primary schools in the fort beaufort district’, african journal of disability 6(0), a377. https://doi.org/10.4102/ajod.v6i0.377 original research adaptation of the curriculum for the inclusion of learners with special education needs in selected primary schools in the fort beaufort district toyin m. adewumi, symphorosa rembe, jenny shumba, adeola akinyemi received: 10 apr. 2017; accepted: 25 july 2017; published: 11 oct. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is need for ‘high-quality’ teachers who are equipped to meet the needs of all learners through provision of education for an inclusive society according to equal opportunities to all. objective: this paper investigates pockets of good practice in the adaptation of the curriculum for the inclusion of learners with special education needs (sen) in selected primary schools in the fort beaufort district. method: the study adopted a qualitative research approach and employed a case study design. eight teachers and 10 principals from 10 selected primary schools, 4 education district officials and 1 provincial official were interviewed. purposive sampling was used to select the participants. data were collected using document analysis and semi-structured interviews and were analysed thematically. result: the study established that teachers use methods relating to different teaching strategies, individual work, group work and extra work. conclusion: it was concluded that there are pockets of good practice of inclusion policy such as the use of different teaching strategies, individual work, group work and extra work for inclusion of learners with sen in some of the selected primary schools in the poor rural context. the paper recommends adequate training for teachers in curriculum adaptation in order for all teachers to accommodate learners with sen. introduction post-apartheid south africa is facing many challenges, one of which is appreciating the right to a basic education for all learners in general, and learners with special education needs (sen) in particular. during apartheid, learners were separated and educated according to race. there were also special schools for learners with sen (koay et al. 2006; walton & lloyd 2011). to redress the segregated system and to align south africa with other countries in accommodating learners with sen in regular classes, south africa has put in place a policy that encourages an inclusive education system (al zyoudi, al sartwai & dodin 2011; koay et al. 2006). inclusion is the act of educating learners who were previously educated in special schools, as a result of their special needs, in regular schools that provide the necessary support to ensure access to quality education. curriculum adaptation refers to improvements and amendments in what is taught, methods of teaching and structures of education with the aim of accommodating all learners (chataika et al. 2012). the south african government’s initiative to ensure inclusive education is outlined in the 1996 constitution and a number of policies, among them the south african schools act (sasa) of 1996 and the white paper number 6 of 2001: building an inclusive education and training system (department of education 2001). the best way of reducing barriers emanating from the curriculum is to make sure the process of learning and teaching is flexible enough to involve different learning needs and styles (department of education 2001). there have been concerns by media and different stakeholders that, despite implementation of inclusive education, many vulnerable learners, among them learners with sen, remain marginalised (ainscow 2012; harry & klingner 2014; prinsloo 2001; sisonke consortium 2006; tikly 2011; walton 2011). informally, the public and the media have attributed the challenges encountered by children with sen in accessing basic education to teachers using the same criteria for teaching and assessing all learners in the class, despite their diverse needs (ainscow 2012; motala 2011; tikly 2011). as a result of such prevailing conditions, learners with sen reportedly have a high dropout rate, are often not in school at all and have poor academic performance (ainscow 2012; engelbrecht & green 2007; singh 2010; sos children newsletter 2012; tikly 2011; walton 2011). many studies have been performed on the adaptation of the curriculum for the inclusion of learners with sen but hardly any study has systematically investigated the pockets of very good practice of curriculum adaptation, especially in poor rural schools characterised by difficult working conditions and inadequate resources (engelbrecht & green 2007; lomofsky & lazarus 2001; mastropieri & scruggs 2005; singh 2010; skinner 2016). hence, this study attempted to fill the gap by examining how the curriculum is adapted to accommodate sen learners as well as identify other pockets of good practice. research question in this study, the researchers attempted to answer the following research question. how is the curriculum adapted to ensure that it meets the needs of learners with sens? methodology this paper adopted an interpretivist paradigm and the qualitative approach and used a case study design that relied largely on interviews and document analysis. the design gives in-depth details and narrative accounts from teachers, principals, education district and provincial officials on the adaptation of the curriculum for the inclusion of learners with sen in selected primary schools in the fort beaufort district (creswell 2014). the semi-structured interviews allowed the researchers to get first-hand information about the adaptation of the curriculum for the inclusion of learners with sen in selected primary schools in the fort beaufort district, thus enabling them to understand the descriptions, thoughts and meanings that participants attributed to their curriculum adaptation (kuada 2012). this paper employed document analysis partly to fill gaps left by the interviews. documents related to the study were revealed which included lesson plans, learners’ and teachers’ profiles. information from these documents provided data that complemented the data gained through interviews. eight teachers and 10 principals from 10 selected primary schools, 4 education district officials and 1 provincial official were interviewed. purposive sampling was used to select the participants. the gatekeepers, for instance principals and other colleagues, were employed to gain access to the research sites and participants. the data were analysed by clustering common themes, tallying stories and ranking responses to uncover the main issues that emerged. the researchers went back to ask the participants to comment on whether they felt the data had been interpreted in a manner congruent with their experiences for confirmation and verification (creswell 2014). ethical considerations ethical clearance was obtained from the university of fort hare ethical committees, and permission was sought from and granted by the eastern cape education district. the selected participants were made to sign the informed consent forms as an indication of agreement to participate while the researchers promised to observe the code of ethics. the results of the study are discussed below. in the study, teacher, principal, education district official and provincial official participants are abbreviated as t1-t8, p1-p10, edo1-edo4 and po1, respectively. results this study investigated the adaptation of the curriculum for the inclusion of learners with sen in selected primary schools in the fort beaufort district. this information was sought through interviews with the selected teachers, principals, district officials and provincial official. the following are responses from teachers indicating the various methods that they used in adapting the curriculum to ensure inclusion of all learners. these manifest pockets of very good practice of inclusive education in some schools. ‘i scale it down a bit lower, so they can grasp the meaning and it can be easier for them to understand the meaning. if i see that they don’t understand afrikaans, i have to translate the word to english for them so that at least they have the understanding of what we are working on.’ (t1, female, 48 years old) ‘if i am doing mathematics i give the other learners difficult ones and give the slow ones the simple ones. the aim is to make sure they all understand the content. i teach all of them but if i see that they don’t understand or they are frustrated, i give them remedy. i change the methods, skills in order for them to understand the content and for me to achieve my objectives. i give them homework also in my class to ensure continuity at home. i have three groups. the first ones are the gifted learners, the second ones are the hard workers, these ones understand and the last group are my slow learners who always need my help.’ (t4, male, 53 years old) this study also found that some of the teachers were not adapting the curriculum to meet the needs of all learners because of the size of the classes as well as a lack of training. ‘it is difficult to adapt the curriculum so that it meets the needs of all learners with full numbers of learners in the classroom. we have learners up to forty five in the class. it makes it really difficult.’ (t5, female, 37 years old) ‘our school operates multi-grade and large classes because of shortages of teachers. multi-grade is the combination of two or more grades in a classroom. multi-grade, however, has its own advantage. for instance slow learners in upper grades sometimes grasp from the lesson teachers teach the lower grades.’ (t3, female, 46 years old) t3 further said: ‘many of the educators in public ordinary schools don’t have the skills and expertise in dealing with these learners that are experiencing barriers. we don’t have the qualification to do that.’ (t3, female, 46 years old) these findings are evidence of good practices of inclusion of learners with sen, particularly in the context of this study, which is within a rural, poorly resourced environment. most of the principals identified the various methods used by teachers in adapting the curriculum to ensure inclusion of all learners. the use of different teaching strategies, dedication of their time, group work and lowering the bar, for example giving remedial work from lower classes to accommodate all learners, were some of the methods used. only p5 seemed not to be really familiar with what was going on in his school. the following was his comment: ‘it is sometimes difficult. the staff is basically divided into two groups; we have the experienced teachers and younger ones. especially, the younger ones struggle to marry ideas and that is because of experience. the elderly feel more comfortable with the learners. it is difficult for me to say exactly how they adapt the curriculum. i’m not hands on in the class.’ (p5, male, 55 years old) for their part, the education district officials in their various interviews expressed contradictory opinions. the following are some comments made in this regard: ‘teachers adapt by using what is called curriculum adaptation but unfortunately, teachers do not do that. they come with excuses that this is extra work because curriculum adaptation is about simplifying work and giving work to learners according to their abilities. if curriculum adaptation is done in schools, learners will be fully supported in schools.’ (edo1, male, 45 years old) ‘teachers become impatient to start from scratch with learners. there are lots of learners who cannot read and write, we do not know where the problem is, is it with the system or the teachers?’ (edo2, female, 45 years old) ‘we have officials with the district who are supporting the teachers. i’m not hands-on with this question but there is a friend of mine who is at the district dealing with curriculum adaptation.’ (edo3, female, 63 years old) ‘teachers are saying it’s difficult to implement, it is difficult for them to adapt the curriculum so that it meets the needs of the learners and with full numbers of learners in the classroom. they are having learners up to forty-five in the class, it makes it really difficult. coming from the class myself, so it makes it difficult, i don’t think teachers are doing it the way it should be done because at the back of their minds, they have to rush, knowing that there is a learner who is lagging behind, what about the other 44 learners, that is what they are saying.’ (edo4, female, 38 years old) the only provincial official interviewed in this study established that the province is starting to train ordinary public school teachers on the necessary skills in identifying, assessing, adapting, differentiating curriculum and managing diversity in the classroom, through workshops. below is his comment: ‘educators especially at the special schools have been trained to identify and assess these learners and they also know how to do curriculum differentiation and diversity in the classroom through workshops. they know how to deal with different barriers experienced by learners. for example these teachers know how to help learners who cannot write.’ (po1, male, 56 years old) po1 further said: ‘for now we are dealing with special schools and full service schools as time goes on we will roll it to the mainstream schools. we are starting to train teachers at the public ordinary schools to have necessary skills to identify and assess learners and if these learners cannot be helped they should be referred to the dbst who will refer learners to specials or full service schools.’ (po1, male, 56 years old) it was evident from document analysis that some of the teachers in the selected schools were actually adapting the curriculum to accommodate all learners in their classrooms. the researchers found this to be true in teachers’ lesson plans where different teaching strategies were used in the classrooms. evidence of good practice of inclusive education policy was also found in learners’ profiles as some of these learners were given remedial work from lower classes and extra work to take home to ensure continuity. discussion this study examined the adaptation of the curriculum for the inclusion of learners with sen in selected primary schools in the fort beaufort district. this study established the use of different teaching strategies, dedication of time, multi-grade, individual work, group work, extra work and coming down to learners’ level to accommodate all learners as some of the methods used to adapt the curriculum for the inclusion of learners with sen. these findings are evidence of good practices of inclusion of learners with sen, particularly in the context of this study, which is within a rural, poorly resourced sector. these findings are also in accordance with the rights-based approach that argues that the curriculum should be adapted to meet the needs of all learners. education must be flexible and adaptable as there are constant changes in the challenges and needs of societies. all education systems and education programmes and campaigns must take the diversity of learners and their needs into consideration (lohrenscheit 2002). laurillard (2013) notes that there is no method or programme that is complete and fits all learners and teachers, and teachers have the freedom to develop their own battery of different programmes, methods, skills and knowledge to select from in making and revising curricula for individual learners and classes. it was also found that some teachers were not adapting the curriculum to meet the needs of all learners because of the size of the classes as well as a lack of training. this finding is contrary to the rights-based approach, which states that there should be adaptation in curriculum to meet the needs of the learners with sen (polat 2011; tomaševski 2004). curriculum should be flexible and adaptable as there are constant changes in the challenges and needs of societies. the rights-based approach considers developing appropriate curriculum adaptations to match with learners’ needs instead of the learners fitting into the curriculum (polat 2011; tomaševski 2004). the approach places emphasis on how teachers can accommodate diversity and address sen. in the international literature on inclusion, emphasis is placed on strategies that ensure individual access and participation. this access is frequently obtained through creating accommodations and adaptations to teaching, learning and assessment (alquraini & gut 2012). odom, buysse and soukakou (2011) observe that the individualised education programme is an essential component of inclusion. differentiated instruction needs teachers to change their practices from a programme-based pedagogy to a learner-based pedagogy. teachers endeavour to adapt pedagogical interventions to the needs of each learner, admitting that each learner varies in interests, learning profile and level of functioning. differentiated instruction may facilitate high levels of both learner engagement and curricular achievement (reis et al. 2011). the study revealed that the province is starting to train ordinary public school teachers with the necessary skills in identifying, assessing, adapting, differentiating curriculum and managing diversity in the classroom through workshops. darling-hammond (2010) states the importance of in-service training as an essential component in the delivery of quality education, so that teachers can receive continued training in teaching methodology in order to upgrade their skills and knowledge. richards and rodgers (2014) state that specialist teachers are the norm internationally. they are capable of teaching a wide variety of skills and of using a range of teaching methods and strategies, so that every learner is encouraged to participate enthusiastically in teaching activities. conclusion this study revealed the various methods used by teachers in adapting the curriculum to ensure inclusion of all learners. the use of different teaching strategies, dedication of their time, individual work, group work, extra work and coming down to the learners’ level to accommodate all learners were some of the methods used. despite the multi-grade and large classes in some of the schools, teachers were able to differentiate their teaching methods to ensure that learners with special needs are catered for. one can, therefore, conclude that the curriculum is being adapted in spite of the challenges encountered in the process, especially in schools in contexts with limited resources. there is also evidence of good practice in the fact that teacher respondents know what curriculum adaptation is and how it is supposed to be carried out. these findings are evidence of good practices of inclusion of learners with sen, particularly in the context of this study. however, this study also found that some of the teachers were not adapting the curriculum to meet the needs of all learners because of large classes and a lack of training. recommendations from the results, the paper recommends that there be adequate training for all teachers. they should be given pre-service and in-service training to help them reorient their thinking about inclusion policy, teaching strategies, assessment modification, and adaptation of the curriculum. in addition, there is need to recruit a cohort of specialised teachers who are trained in inclusive education, so that they can influence the in-service teachers to practise inclusive programmes and change their attitudes towards learners with sen. acknowledgements the authors thank all teachers, principals, and district and provincial officials for their participation in this study. our gratitude goes to govan mbeki research and development centre for its support. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions this paper was conceptualised by t.m.a. and s.r while j.s. and a.a. contributed by reshaping the paper. references ainscow, m., 2012, ‘moving knowledge around: strategies for fostering equity within educational systems’, journal of educational change 13(3), 289–310. alquraini, t. & gut, d., 2012, ‘critical components of successful inclusion of students with severe disabilities: literature review’, international journal of special education 27(1), 42–59. al zyoudi, m., al sartwai, a. & 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r.b., 2011, ‘the effects of differentiated instruction and enrichment pedagogy on reading achievement in five elementary schools’, american educational research journal 48(2), 462–501. https://doi.org/10.3102/0002831210382891 richards, j.c. & rodgers, t.s., 2014, approaches and methods in language teaching, cambridge university press, cambridge, united kingdom. singh, s., 2010, ‘responding to learner diversity in the classroom: experiences of five teachers in a primary school in kwazulu-natal’, doctoral thesis, kwazulu-natal university, kwazulu-natal. sisonke, 2006, sias: participants manual: preliminary version for field testing, sisonke consortium, pretoria, south africa. skinner, b.f., 2016, the technology of teaching, bf skinner foundation, new york. sos children newsletter, 2012, sos villages international ingo accountability chapter report, sos children’s village international, innsbruck, austria tikly, l., 2011, ‘a roadblock to social justice? an analysis and critique of the south african education roadmap’, international journal of educational development 31(1), 86–94. tomaševski, k., 2004, manual on rights-based education: global human rights requirements made simple, p. 57, unesco, bangkok. walton, e., 2011, ‘getting inclusion right in south africa’, intervention in school and clinic 46(4), 240–245. https://doi.org/10.1177/1053451210389033 walton, e. & lloyd, g., 2011, ‘an analysis of metaphors used for inclusive education in south africa’, acta academica 43(3), 1–31. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) glory t. tsangue empowerment and disability inclusive development (edid) program, cameroon baptist convention health services, yaounde, cameroon jacque chirac awa services for persons with disability, cameroon baptist convention health services, bamenda, cameroon josephine nsono gender and child protection services, cameroon baptist convention health services, bamenda. cameroon charlotte w. ayima department of research/evaluation, cameroon baptist convention health services, mutengene-buea, cameroon pius m. tih cameroon baptist convention health services, bamenda, cameroon citation tsangue, g.t., awa, j.c., nsono, j., ayima, c.w. & tih, p.m., 2022, ‘non-disclosure of abuse in children and young adults with disabilities: reasons and mitigation strategies northwest region of cameroon’, african journal of disability 11(0), a1025. https://doi.org/10.4102/ajod.v11i0.1025 original research non-disclosure of abuse in children and young adults with disabilities: reasons and mitigation strategies northwest region of cameroon glory t. tsangue, jacque chirac awa, josephine nsono, charlotte w. ayima, pius m. tih received: 25 feb. 2022; accepted: 17 aug. 2022; published: 14 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: child abuse is a serious public health issue in lowand middle-income countries, and children with disabilities are at greater risk of abuse. despite this heightened risk, the abuse of children with disabilities often goes undetected and under-reported, leading to the continuity of such abuse by their abusers. objectives: this study was aimed at identifying the reasons for non-disclosure of abuse and possible mitigating strategies to curb this dilemma in children and young adults with disabilities (cwd). methods: a population-based record-linkage qualitative study was conducted among cwd (both at home and in institutions) in the northwest region of cameroon. twelve key informant interviews and eight focus group discussions (fgds) were conducted among key staff from child protection offices for child abuse, parents and teachers in schools. fifty in-depth interviews were also conducted among children with disabilities. reasons for nondisclosure and proposed mitigating approaches from audio tapes were transcribed verbatim, thematic analysis performed and findings reported. results: a lack of knowledge on where to disclose, fear of stigma, long and expensive procedures, a lack of confidence in the justice system, threats from abusers, protection of family unity and friendship ties were linked with nondisclosures. the most common mitigating strategies postulated were sensitisation, capacity building on parenting and the creation of child protection committees. conclusion: from this study, nondisclosure of abuse is common in cwd, and thus there is a need for urgent attention to curb the situation for safer and more child-friendly environments through sensitisation, parental support and putting in place strategic child protection committees. contribution: this article is based on the experience of all authors with interest in the field of disability. this article contributes to the pull of knowledge by providing context specific reasons for non-disclosure of abuse as well as mitigation strategies. keywords: children with disabilities; nondisclosure; reasons; mitigation; northwest region; cameroon. introduction abuse of children is a global human right and public health issue, with significant negative health and social impacts on children’s development. child abuse is the abuse and neglect that occurs to children under 18 years of age. it includes all types of physical and/or emotional ill treatment, sexual abuse, neglect, negligence and commercial or other exploitation, which results in actual or potential harm to the child’s health, survival, development or dignity in the context of a relationship of responsibility, trust or power (world health organization [who] 2020). estimate show that about 5% – 50% of children worldwide suffer from child abuse (meinck et al. 2016). estimates of 65% for physical abuse and 55% for both noncontact and contact sexual abuse have been reported in some african countries (meinck et al. 2016). although statistics are not readily available on the prevalence of children with disabilities in cameroon, judging from the who (2011) estimates that 15% of persons in a given population live with a disability, it can be estimated that there are 3.7 million persons with disabilities in cameroon (15% of the total population of 24 678 234) (worldometer 2017). a previous study conducted in the northwest region of cameroon shows an overall population prevalence of disability of 10.5% (95% confidence interval [ci] 9.0–12.2), with children 0–17 years at 4.7% and youth and adults 18–49 years at 6.8% (international centre for evidence in disability [iced] 2014). the 2010 african child policy forum report on violence against children with disabilities in some african countries, including cameroon, ethiopia, senegal, uganda and zambia, documented a very high level of violence against children. this report estimates that in cameroon, over 50% of these children had been hit, punched, kicked or beaten; 25% made to eat hot chilli, pepper or very bitter food or drink; and over 25% choked, burnt or stabbed (simo, duthé & odimegwu 2019). the situation is not different in other lowand middle-income (lmics) countries, as the report goes further to state a relatively similar percentage of occurrences of abuse in children with disabilities (the african child policy forum 2010). previous studies indicate high prevalence of child abuse in africa and cameroon (danquah et al. 2015; hildyard & wolfe 2022): [w]hile all children are at risk of being victims of violence, children with disability find themselves at a significantly increased risk because of stigma, negative traditional beliefs and ignorance associated with disability. (hildyard & wolfe 2002) anecdotal evidence suggests that local customs and beliefs exacerbate abuse, especially caused by insufficient awareness and action. the concept of child protection is relatively new in the northwest region of cameroon, as most parents believe that they are supposed to bring up their children the way they want. corporal punishment and other abuse are still rampant in schools and in the communities across the region (wango 2014). evidence is essential to convince all actors of the need for change. all persons under the age of 18 have the same right as adults to physical and psychological integrity and to protection from all forms of violence (who 2020). article 19, page 3 of the convention on the rights of the child (crc) – adopted by the united nations (un) in 1989 – exhorts states to take: [a]ll appropriate legislative, administrative, social and educational measures to protect the child from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual abuse … (united nations 2006a: article 19, p. 3) similarly, the united nations international committee on the rights of the child has emphasised the importance of member countries prohibiting all forms of physical punishment and degrading treatment of children (crc 2006). nonetheless, for various social and cultural reasons, children and youth suffer abuse in the home (including foster homes), at school, in legal and child protection systems, at work and in the community (the african child policy forum 2010). thus, children and youth are abused precisely in those spaces and places that should offer them protection, affection, developmental stimulation, shelter and promotion of their rights. one of the factors that make them highly vulnerable is their lack of autonomy, because of their young age and the consequent high levels of emotional, economic and social dependency on adults or institutions, which make it difficult for them to put a stop to the abuse, request help or report the situation (crc 2006). the convention on the rights of persons with disabilities (crpd) is intended as a human rights instrument with an explicit, social development dimension (un 2006). it adopts a broad categorisation of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. it clarifies and qualifies how all categories of rights apply to persons with disabilities, and it identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated and where protection of rights must be reinforced (un 2006). the african charter on human and peoples’ rights (achpr) was adopted in june 1981 and entered into force in october 1986 to promote and protect human and peoples’ rights and freedoms while taking into consideration the legal and political cultures of african states, as well as preserving african tradition and identity (achpr 1986). the government of cameroon has been making great efforts in the past 25 years to protect the rights of children. this is evident in the signing of the crc on 27 september 1990 and its ratification on 11 january 1993 (crc 2000). the cameroon government also endorsed the international pact on civil and political rights since 27 june 1984 and the convention against torture and other cruel, inhuman or degrading treatments or punishments since 19 december 1986 (crc 2000). furthermore, cameroon ratified certain legal instruments of a regional nature such as the african charter on human and people’s rights on 20 june 1989 and the african charter on the rights and well-being of the child on 05 december 1997. cameroon has also issued numerous laws, orders, decrees and circulars that are in accordance with the un convention (lovert 2015). more so, cameroon is in the process of completing a single, comprehensive national law specifically focused on children’s rights and welfare issues: the child protection code (lovert 2015). nationally, there exists a surfeit of laws for the protection of the rights of persons with disability (pwd). these laws include, inter alia, the much-heralded 1996 cameroonian constitution (the government of cameroon 1996) and the 2010 law relating to the protection and welfare of persons with disabilities (the government of cameroon 2010). however, these laws seem to remain only on paper with little or no practical implementation. child abuse, especially among children with disabilities, has been a common practice in cameroon and the northwest region in particular for a long time (wango 2014). children, especially those with disabilities, were and are still considered people without rights, and their parents or guardians (including authorities under whose care they are) were supposed to bring them up in the way these parents or guardians desire (mactaggart et al. 2016). these children encounter abuse of varied forms on daily basis, ranging from physical abuse to emotional abuse to mental and sexual abuse. when these children and young adults are abused, they may not disclose, some for unknown reasons, while some may just feel that when they complain no one will listen to them (pinheiro 2006). context-appropriate mechanisms have been advanced through research to ensure the respect of the rights of children with disabilities as enshrined in the united nations crpd (un 2016), and the child protection code under elaboration in cameroon which will be a comprehensive national law specifically focused on children’s rights and welfare issues (united nations 2006). child abuse, especially among children with disabilities, in cameroon is rampant and a common practice and constitutes the violation of the most basic rights of children and youth as enshrined in the universal declaration of human rights. surveys conducted across africa and in cameroon in particular show a high level of abuse against children and young adults with disabilities (cwd). for example, 52% of participants in cameroon and zambia reported being forced to have intercourse. these alarming rates do not include unreported cases of child abuse. the consequences associated with this do not only affect the victims but also the community as an entity. the prevalence of child sexual abuse in africa ranges between 2.1% and 68.7% for girls in tanzania and ethiopia, respectively, and 4.1% – 60% for boys in south africa (the african child policy forum 2010). in some parts of africa, more than 8 out of 10 children aged 1–14 years experience violent discipline every month. africa has the highest rates of child neglect in the world, with 41.8% of girls and 39.1% of boys being neglected by their caregivers. in nigeria, 66% of girls and 58% of boys under 18 witness violence in the home. more than half of all children aged 13–15 in west and central africa are bullied in school (the african partnership to end violence against children | end violence n.d.). this research investigates and documents in-depth information on the reasons and consequences of nondisclosure of abuse in children with disabilities and further develops appropriate and effective strategies to discourage such practices so as to sustainably improve the well-being of children with disabilities. cameroon’s criminal justice system consists of two major departments, the bench and the criminal department, commonly known as the legal department, for prosecuting all criminal matters. the bench department consist of a residing magistrate for examining criminal cases, while the legal department supervises, controls and directs all investigations and prosecutes the same at different levels (fonachu 2010). investigation is regulated by the criminal procedure code. investigations are directly placed under the supervision of a magistrate acting as a state counsel. these investigations are carried out by the judicial police and gendarmes who act as auxiliaries of the state council (fonachu 2010). the duties of the judicial police are performed by judicial police officers, judicial agents and all other legal and paralegal practitioners to whom judicial duties are assigned by law (fonachu 2010). they are responsible for investigating offences, collecting evidence, identifying offenders and accomplices and bringing them before the legal department, including the abuse and violation of the rights of persons with disabilities. there is a scarcity of data in cameroon on the abuse, nondisclosure and mitigating factors of abuse in cwd. the aim of this study was to assess the reasons for nondisclosure of abuse and possible mitigating strategies among cwd. thus, findings from this study will have a significant impact in the design and implementation of specific interventions on prevention and response programs to address abuse and violence against children with disabilities in the northwest region of cameroon and even beyond. research methods and design study setting the study was conducted in the northwest region of cameroon, which is one of the country’s 10 regions, with a population of about three million inhabitants (2015 extrapolation of 2005 national demographic census). the northwest region is divided into seven divisions and 32 subdivisions. according to the 2005 census, the region’s population is composed of 63% rural communities (sneddon 2003). the study was conducted in five of the seven divisions in the northwest region, from which participants were selected. two others could not be visited because of the prevailing crises which have led to so many people being displaced. people with disabilities and older people have been among those killed, violently assaulted or kidnapped by government forces and armed separatists, with several children undergoing one form of abuse or the other (cameroon: people with disabilities caught in crisis – cameroon | reliefweb n.d.). the situation is likely to be worsened among children with disabilities. study design this study was a qualitative study involving the use of focus groups and in-depth interviews with cwd. in addition, key informant interviews were conducted among selected professionals in the domain of child abuse, family members, caregivers and other stakeholders. study population children and young adults with disabilities who had experienced abuse the cameroon baptist convention health services (cbchs) has a network of over 20 disability partner organisations, through which they provide financial assistance to enable cwd to attend school, receive medical intervention and find livelihood opportunities. the cbchs is involved in strengthening child protection and safeguarding systems in the institutions and communities from which these children were enrolled in the study. children and young adults (10–25 years) who had experienced one form of abuse or another were purposively selected for the in-depth interviews from these training and rehabilitation centres for persons with disabilities. these included six training and rehabilitation centres and five learning institutions. study participants were also selected from communities in which these centres or institutions were located. furthermore, children and young adults who had reported having experienced any form of abuse to any staff from the organisations or to a teacher, or a child who was observed to have experienced abuse, were purposively selected for the interview. parents of children or youth with disabilities who had experienced abuse parents of cwd were purposively selected from parent support groups affiliated with learning and training institutions for pwd where their children were enrolled. these parents resided in the communities. instructors or teachers of children and youth with disabilities instructors of cwd were purposively selected for the key informant interviews from six training and rehabilitation centres as well as from five learning institutions in which cwd were located. staff from relevant child protection offices community-based rehabilitation (cbr) staff, who visit the homes of children with disabilities on a daily basis to assess needs and provide appropriate interventions, were purposively selected for the interviews. these cbr workers from child protection offices signed child protection commitments to ensure they are not abusers, as they work with these cwd in the communities as well as within institutions. civil society and community members civil society members from partner organisations, who are involved in child abuse issues in the community either through counselling or provision of psychosocial support or linkages to legal and judiciary services, were purposively selected. through civil society correspondence, community members were purposively selected based on their observation or experience of abuse of a child or young adult. sampling strategy sampling technique sampling of children and young adults with disabilities the cameroon baptist convention health services empowerment and disability inclusive development (cbchs-edid) program works in collaboration with other organisations to support people with all types of disabilities from various institutions and communities. purposive sampling was used whereby children and youth with disabilities from rehabilitation and training centres, in schools and in the communities who had experienced any form of abuse were recruited in the study. the research team also worked in collaboration with the cbr staff, who are in charge of identifying and assessing the needs of cwd in the communities and institutions, to identify those who had experienced or are experiencing any form of abuse. by assessing the needs of cwd over years, trust had been developed between these children and cbr workers, which made it easier for these children to confide instances of abuse to them. these children also disclose to their trusted friends. thus, through these workers, the researchers were able to trace children and young adults who had experienced any form of abuse. observations were also made during recruitment to determine if a child had experienced any abuse through body language or scars on the body. safety was assured through working in collaboration with legal practitioners. the cbr program is also involved with the legal follow-up and safety of cwd experiencing abuse. thus, both disclosed and undisclosed cases of abuse were followed up for reporting to guarantee the safety of the victims. children and young adults were purposively selected to include all forms of disabilities (hearing, visual, physical and intellectual impairments). sampling of key informants key staff from child protection offices were also purposely selected to take part in the study. information on reported cases of abuse or violence was obtained from child protection offices, social centres, the justice and peace office and school establishments where these children are enrolled in the study. participants were purposively selected to represent all forms of disabilities in the study. as such, stratification was carried out to ensure that key informants in all the categories of disabilities were involved (hearing, visual, physical and intellectual impairments). furthermore, family members, caregivers and community members were these children reside were also purposively selected into the study. key staff from child protection offices were also purposely selected to take part in the study. natasi (2014) recommends that a sample size for a qualitative study should be large enough to leave you with nothing left to learn, but not so large as to give room for redundancy (no new concepts emerging). with this in mind, the study’s sample size was therefore as follows: 50 children and youth with disabilities who had experienced abuse were recruited for the in-depth interviews. in-depth interviews were also conducted among 12 key informants. furthermore, eight fgds were conducted among key staff, parents and persons with disabilities from institutions and communities hosting these cwd, with an average of 6–8 participants per fgd. data from interviews were collected based on the research questions until the saturation point was reached, that is, no new information could be obtained from the study participants. data collection and study duration focus groups and in-depth interview guides were developed by authors j.c. and j.n., pretested and used for data collection based on questions on past studies and who standards on the types of abuse. focus group and in-depth interview guides included, for example, the following questions: what are the various types of abuses you know? what are your general views about the abuse of children and young adults with disabilities in this community? do you have examples? what can be done to reduce the abuse cases in children with disabilities? examples of questions for the in-depth interviews among cwd included: how do you feel as a child or youth when you are abused? what are the things people do to you that you do not like? why did you hesitate to report the abuse? what can be done to prevent people like you from being abused? data were collected sequentially, starting with in-depth interviews among cwd who had experienced any form of abuse. findings from these interviews were used to further refine the type of questions to include in the key informant in-depth interview and focus group discussion guides. next, focus group discussions (fgds) were conducted among staff from schools and relevant child protection offices, parents and persons with disabilities. key informants with an in-depth knowledge on the topic under study were invited after focus group discussion sessions to take part in the in-depth interviews. sequential data collection was done to refine the questions at each stage for the different groups of study participants. trained research assistants included sign language interpreters who assisted in the interviews of children and young adults with hearing impairments. focus group and in-depth interview guides were pretested by trained data collectors on a separate set of children and young adults with different forms of disabilities, parents and key informants who were not part of the main study. findings and responses from the pretest were used to modify the final data collection tools. the data collection phase included in-depth interviews (among cwd both at home and in institutions) and focus group discussions with parents of children with disabilities and key informants. during interviews, observations were made to capture any facial expressions or behaviours that may further inform the findings of the study. participants for in-depth interviews were recruited from six training and rehabilitation centres as well as from five learning institutions in which cwd were located. various techniques of interviewing children were employed. we used keith’s (2013) recommendations of a comfortable setting, free from distractions, use of other play techniques to enable them to narrate or recall descriptions of how the abuse occurred without victimising themselves again and open-ended questions to get the best out of the child’s recall memory. the study was conducted over a period of three months from march to may 2018. in depth interviews among children and young adults interviews were conducted by j.n. with the assistance of trained data collectors recruited from the communities and institutions, including two sign language interpreters for sign language users, who had a one-on-one interview with all the 50 participants using an interview guide. this was done after the participants had received and signed an informed consent and/or assent form. trained data collectors conducted interviews in collaboration with cbr staff (in charge of care and follow-up on legal procedures) and other partner organisation staff (community of practice for gender and child protection, clinical psychologist, community counselling clinic [ccc]) who work directly with these cwd. thus, frequent visits to the homes and host institutions helped in building rapport and trust for smooth data collection. the interviews were conducted in the most rigorous way to ensure reliability and validity (‘trustworthiness’), thus ensuring credibility, transferability, confirmability and authenticity of research findings. this was done using more than one interviewer across the 50 interviews and corroborating narratives with observations. transcribed data were read several times, and cross-validation of emerging themes was carried out among researchers. the research team is thus confident that the findings reflect the questions the research sought to answer. fifty cwd were interviewed, including 25 girls and 25 boys. only eight children with intellectual impairments were interviewed because of the difficulty in getting verifiable information from them, as shown in table 1. for children below 18, an assent form was used. authorisation to take part in the study was signed by caregivers of children. the study had no case of child abuse with the abuser being the parent. thus, it was possible for a caregiver to give consent. for participants 18 years and above, consent was obtained from them directly. both children, youth and adults were free to withdraw from the study when they wanted to, with no consequences for the care and treatment from the organisation. various child and adolescent-friendly techniques were used to get more information from the children and adolescents. table 1: characteristics of children and young adults with disabilities interviewed. key informant interviews the participants were selected from both urban and semi-urban areas, and this permitted the research team to capture the type of abuse common among children and young adults in those areas. interview guides were used to obtain information from key informants starting with general questions to more specific ones. in-depth interviews among key informants were conducted after completing those with cwd. the key informants enrolled in the study included: parents of children with disabilities, cbr workers, persons with disabilities, legal practitioners, civil society members and community members. focus group discussions eight focus group discussions, each comprising six to eight participants, were conducted among study participants. participants were purposely selected and formal discussions were conducted using a guide and at a prearranged time and venue. focus group discussions were conducted by j.n. as the facilitator with the assistance of trained data collectors, including a note taker. each fgd lasted for 70–90 min. information was obtained on the social structure of the community in which these cwd live, an in-depth understanding of the context and social fabric of the community and of how opinions and knowledge are formed in social contexts on child abuse. the fgds were facilitated by a moderator (j.n.), who posed the questions using the topic guides and who was assisted by a note taker. the discussions were audio-recorded and transcribed immediately after the process. observed body language and attitudes were also noted. focus group discussion participants included female and male teachers of cwd, staff from relevant child protection offices, parents of cwd and persons with disabilities. in the process of data collection, observations were carefully made to ensure that responses were consistent. for example, when a child said he or she had never been physically abused and scars were seen on his or her body, the research team probed further to know the origin of the scars. also, during the focus group discussions, the team observed the process to make sure there was active participation from all to ensure that some participants were not dominating the discussions. data analysis the recorded data were transcribed verbatim and captured on an excel database (microsoft corporation, redmond, washington, united states). codes were given to similar themes guided by the key research questions on the reasons for nondisclosure and mitigation of child abuse among cwd. g.t.t., j.c.a. and j.n. undertook an analysis of the content of the open-ended responses using thematic analysis, which involves organising data into themes by recognising patterns (braun & clarke 2012). data on the types of abuse were analysed by deductive coding, using a framework developed by the who on the types of abuse (who 2020) and inductive coding of emerging themes on the possible reasons for nondisclosures and proposed mitigation strategies. all qualitative data were read by c.w.a., who reviewed the analysis for consistency and quality. themes and subthemes were refined through discussion between the researchers for group validation. ethical considerations prior to the study, administrative authorisation was obtained from competent authorities in charge of the study institutions and communities visited and ethical authorisation was obtained from the institutional review board of the cbc health services. apart from this, the study was conducted in line with the ethical principles for the conduct of studies with human subjects as stipulated by beauchamp and childress (1994), including autonomy, justice, nonmaleficence and respect of privacy and confidentiality of participants. the working context was carefully considered, knowing that it was a sensitive topic that could be traumatising to participants. as such, the services of a psychologist were sought. the trained research assistants conducted interviews, after which the ccc providing psychosocial counselling attended to each child or adult with disabilities. the ccc is headed by a psychologist and a certified clinical counsellor who were all enrolled during the data collection training stage of the study to prevent possible secondary trauma. the cbr staff in charge of following up with the legal course of abuse cases followed up with children and young adults who reported having had an experience or currently experiencing any form of abuse to prevent revictimisation. all participants consented or assented to participate in the study and were free to withdraw at any time with no repercussions on them or on the services they were being offered. the research team had responsibilities to protect the research participants by involving legal practitioners and providing counselling for children who had experienced abuse. if a child had not disclosed any previous or ongoing abuse, the researchers ensured the safety of the child through maintaining contact with the child in collaboration with psychosocial counsellors, cbr workers and legal practitioners for justice to be done and to ensure the safety of the child or young adult with disabilities. results demographic characteristics of study participants we had a total number of fifty (50) children and young adults with ages from 10–25 years. a total of 25 males and 25 females for the in-depth interviews with types of disability ranging from physical, hearing and/or speech, visual and intellectual impairments (table 1). a total of 12 key informants constituting six males and six females were interviewed from different institutions and in the community (table 2). table 2: characteristics of key informants interviewed in the in-depth interviews. a total of 60 participants took part in the focus group discussions from different institutions and in the community which constituted 29 males and 31 females (table 3). table 3: characteristics of participants in the group discussions. types of abuse experienced by children and young adults with disability results from the thematic analysis shows that the main types of abuse with various forms under each type were physical abuse, emotional abuse, sexual abuse and neglect (table 4). table 4: types of abuse experienced by children and young adults with disabilities. reasons for not reporting cases of abuse in children with disabilities thematic analysis from the group discussions and in-depth interviews from children and young adults with disabilities, parents and key informants shows several themes emerging as to the reason for nondisclosure of abuse, as presented below. in this presentation of findings, those from children and young adults with disabilities, parents and key informants are presented together. lack of awareness of where to report according to the findings of this study, cases of abuse in cwd are rarely reported by the victims. most of the participants said they were not aware of competent authorities to report to. this is partly because the few who have attempted to report to the police have most often not had fair responses. the participants suggested that a competent authority should be an institution that will take adequate actions against the abusers. an example of such quotes is presented below: ‘at times we want to report these abuses, but when we ask people where to report, they say they do not know.’ (idi 17: youth with disability, female, 19 years) long and expensive procedure most of the parents, key informants and young adults stated that the process to administer justice is long and expensive. they made mention of instances where they have reported cases to the police and other authorities but said authorities kept asking them to leave and come back. at times, they paid for transport to access these services, having to eat and forgo their business activities just to be asked to come back again, and even when they persevered with follow-ups, no favourable judgment was passed, and this discouraged them: ‘[… s]ometimes the process is complicated and takes a very long time. you will go and the police will tell you to come after and this goes on and on …’ (fgd: parent 3, female, 43 years) they also complained about the cost of hiring lawyers to defend their children in the courts. it also emerged that the participants do not know the procedure to report some cases of abuse, especially alleged rape. for the few cases of alleged rape reported, the participants said their cases were most often thrown out because they did not have medical certificates to prove that the child was raped. one of the parents state the following: ‘[… t]he cost for follow-up is very high; they will tell you that you should do medical certificate; you have to certify documents, pay transport up and down. it’s really discouraging …’ (fgd: parent 2, male) lack of confidence in the justice system the majority of the participants from the institutions as well as parents of cwd said it is needless reporting cases of abuse because the judicial and para-legal systems are corrupt. they recounted instances where people have reported cases of abuse and the abusers used their influence and money to corrupt the officials. a respondent said: ‘it is no secret that our judicial system is corrupt …. we reported a case of alleged rape with a medical certificate attached, but to our surprise, the abuser was set free the following day.’ (idi 2: cbr worker, male 38 years) a male parent of a child with disability gave an example of how a prominent man in the community abused his child and the case was reported, but it was dismissed on the grounds that there was no proof. to him, the abuser had corrupted the police chief, as seen from his comments below: ‘i was surprised the police chief called me and said, “there are not enough proofs that this man abused your child.”’ (idi 1: parent of child with disability, male) reporting is also hindered by the wrong assertion that nothing shall be done to the abuser even if the case is reported. because of the lack of confidence in the judicial system, some of the participants reported that victims of abuse at times wrongfully believe that they can never get justice from the competent authorities, so it is needless to report this abuse: ‘even if they report, what will be done? we all know how corrupt our system is.’ (idi 1: community member, female, 35 years) inaction by the teachers and parents many cwd acknowledged that they were not willing to report when they are abused because no action will be taken by their instructors at schools and at the training institutions where they are located. below is an example of a quote from a respondent: ‘when i am abused by other students and i report to my madam, they do not do anything to the students, so i stop reporting.’ (idi 17: youth with disability, female, 19 years) she went on to say that the fact that nothing is done causes the children to abuse her more. furthermore, in communities people look down on cwd such that they ignore these children and youth with disabilities when they report cases of abuse. at times, when these children do report the abuse to adults, they instead further abuse the children: ‘i reported to one uncle that his children are abusing me that with my bended legs and he asked me if my legs were straight.’ (idi 28: child with disability, male, 14 years) another child said when his siblings are beating him and he reports to his parents, they do not punish the siblings. so to him, it is needless to report the abuse. shame and stigmatisation stigma was also identified as one of the reasons why abuse is not reported. most of the participants said that abuse is not reported because the abused are ashamed to let people know what has happened to him or her, especially in the case of sexual abuse. to them, it is better to stay quiet and be at peace than to report and live in ridicule. according to participants, victims of sexual abuse are usually laughed at in the communities when people know that they have been raped, as in most communities of the region, rape is unthinkable and a curse to the family. a respondent who reported a case of sexual abuse had this testimony: ‘people in my village usually point at me when i am passing, saying, “that is the girl who was raped.”’ (idi 26: young adult with disability, female, 20 years) according to participants, sex is still considered sacred and therefore should not be uncovered, especially when you are not married. reporting a case of sexual abuse is indirectly telling the community members that you had sex. consequently, these victims are ashamed to report it, and at times they want to protect their family name. their peers stay away from them, insinuating that they are ‘spoiled’ and that they can influence them. other parents and adults make it difficult for children who have been abused sexually by sending them away from their homes and warning them never to come close to their children: ‘many children who are abused sexually feel shy to open up to us, and as such, many of these abuse cases go on unnoticed.’ (legal practitioner 2, female, 40 years) threats from abusers threats from abusers were noted to have restrained the level of reporting of abuse. at times, these abusers threaten these children that if they report cases of abuse, they will abuse them more. since these children are mostly left alone, they take these threats seriously. a child with a disability stated as follows: ‘the man! if i report, he will kill me and that i should remember that i am always alone in the house.’ (idi 36: youth with disability, female, 18 years) some of the abusers even promised to end their parents’ means of livelihood, like taking back their farmland if they reported the abusers, as seen below: ‘the farm we work belongs to the man who raped me. he told my mother that if she tells anybody about this abuse, he will take back his land from us. as a result, my mother begged me not to tell anyone about what happened.’ (idi 20: young adult with disability, female, 25 years) again, the abusers threaten these children that nobody will believe what they are saying because they have a disability. most participants said this is true, especially for children with intellectual disabilities: ‘people in our communities hardly believe what a child with intellectual impairment is saying.’ (idi 2: civil society member, male, 44 years) to them, the child does not understand what he or she is saying. so at times when these children report to their parents, their parents do not believe them. protection of family unity and friendship ties the majority of staff from child protection offices and cbr workers stated that the abusers of these children are people who are close to them. when a child is raped by a family member, the family will prefer to solve the problem within the family in order that people will not know what transpired. they think that if the case is reported to an outside authority, it will disintegrate the family unity. as a result, some families overlook an incident of abuse in order to protect their family names, but in the process they are putting these children at risk of further abuse and harm. most abuse cases within family circles were noted to have been concealed within the family, with no assurances of a change in behaviour from the abusers. below are examples of such quotes: ‘[… s]ome of these children are being abused by very close relatives, and their parents keep it secret …’ (fgd: participant 3, female, 32 years) ‘[… w]hen they are abused by a stranger, it’s different. but if by a close relative, most parents will prefer to resolve it within, keeping the law away.’ (idi 2: cbr worker, female, 39 years old) acceptance of abuse state interestingly, some of the victims of abuse have accepted their situation and see it as normal for others to be abusing them. this is true with many children being called by derogatory names on a daily basis. they have come to accept the names and answer when others call them by these names. below is an example of such quote: ‘everybody calls me “eboa” [physically disabled person], so to me, it does not bother me anymore.’ (idi 16: child with disability, female, 12 years) another area of acceptance was sexual abuse. some female children and youth with disabilities, especially those with multiple disabilities, experience sex primarily through abuse and may not experience sex outside of the abuse. the cultural beliefs by some people that persons with disabilities (especially girls and women) are asexual scare people away from them. some parents expressed happiness that their children with disabilities were raped, as they are now grandparents, since few people will legally get married to their children with disabilities. furthermore, some young adult women with disabilities, in the quest to have children of their own, did not report sexual abuse. a respondent who had been a victim of sexual abuse acknowledged this, as seen below: ‘i cannot report him because if i do, he will not come back again … in this condition, just few people will want to get married to you … i will like to have my own children too, so i did not report him …’ (idi 49: young adult with disability, female, 21 years) mitigating approaches of child abuse from the study’s research findings, mitigation approaches were proposed by children with disabilities, parents and key informants in child protection centres. multifaceted approach to sensitisation from the thematic analysis, the majority of key informants, parents and young adults with disabilities proposed that community sensitisation involving several approaches should be used to create awareness. according to participants, a one-time sensitisation campaign will not yield the necessary impact because attitude change is a gradual process. the following quotes highlight this: ‘parents and community members should be advised to stop abusing us and beating us.’ (idi 05: child with disability, male, 12 years) ‘we are begging that you should continue talking to everybody in the community … because they are still beatings us in spite of the fact that people have been talking to them not to beat us.’ (idi 24: child with disability, female, 11 years) a female participant with a physical disability proposed the inclusion of children and adults in abuse awareness campaigns as role models, as seen below: ‘adults and children with disabilities should be included in all sensitisation campaigns. why is it that only people without disabilities talk on our behalf?’ (fgd: participant with disability 6, female, 30 years) according to participants, if pwd told their stories, focusing on the support they received at home, school and in the community and how they overcame challenges from their peers and other people, this would go a long way to foster disclosure of abuse among cwd. many teachers of cwd proposed ‘open days’ as a means of sensitisation in the communities, where children with disabilities can exhibit their products and showcase their talents which could alter negative attitudes and abuse of persons with disabilities. in addition, they believe that persons with disabilities should be encouraged to also participate in mainstream open days as this will also help to build their self-esteem. below is an excerpt from one of the female teacher’s narratives in a group discussion: ‘these children with disabilities have hidden talents that need to be exposed through exhibitions.’ (fgd: participant 7, female, teacher, 41 years) capacity building on parenting from the study, it was also noticed that ignorance on how to deal with children with disabilities by parents resulted in neglect and other forms of abuse. this suggests a lack of support provided to parents that could be remedied through parent support groups whereby these parents share their experiences, identify abuse in their children, understand sign language for proper communication with children and also understand how to take legal action if their child or young adult is abused. below are examples of such quotes: ‘parents of children with disabilities should form groups whereby their skills can be developed.’ (idi 1: parent of child with disability, female) ‘[… n]ot every parent understands the needs of a child with an impairment. they need to actively take part and learn in their support groups.’ (idi: cbr worker, female) community child protection committees the majority of the parents and cbr workers proposed putting in place community child protection committees as a mitigation strategy. this was further corroborated by many cwd, as they think that reporting abuse is challenging given that there are no trustworthy avenues in the communities to report to when they are abused. below are examples of such quotes: ‘these children do not know where to report cases of abuse, and at times when they report, no action is taken.’ (fgd 2: male parent of child with disability, 45 years) a child with hearing and speech impairment affirmed this by saying, ‘when i was raped and i reported to one uncle, he instead shouted at me and told other people, who started laughing at me’ (idi 27: youth with disability, female, 16 years). schoolchild safeguarding guidelines many cwd expressed a lack of awareness of the poor treatment they receive as being abusive and something which is punishable by law. to overcome such ignorance on the part of cwd, there is a need for awareness creation on signs of abuse and how to avoid putting them at risk of harm or abuse. ignorance was expressed by one of the children with disabilities, as seen below: ‘at times when they are abusing us, we are not even aware, since we are alone most of the times.’ (idi 11: child with intellectual disability, male, 14 years) such training should address cases of abuse at home, in schools and in the community. more so, children accept abusive situations when they do not know their rights and therefore need to be trained on these rights. awareness on abuse as an abnormal act perpetrated on them must also be created. the need of for putting in place awareness guidelines on abuse for children in schools and institutions was corroborated by a majority of teachers and staff from child protection offices. according to them, all schools should develop child safeguarding guidelines under the supervision of competent authorities. this was reflected in the response as seen below: ‘[… e]ach institution is supposed to have child safeguarding policies or guidelines …’ (fgd: participant 7, female teacher, 41 years) most adults and young adults with disabilities raised concerns on their passive participation in activities that should actively include them and thus create awareness and prevent them being abused. this was acknowledged by one of the participants as seen below: ‘[… w]e don’t know, as decisions are taken on our behalf without consulting us …’ (fgd: adult with disability, female, 30 years) discussion from the review presented in the introduction, child abuse is still common in africa and specifically in cameroon. despite the laws put in place by the un, crc, crpd and the government of cameroon, cases of child abuse still go undetected and under-reported. for example, a study among some college students with disabilities who were abused revealed that only 27% reported the incident (findley, plummer & mcmahon 2016). this study assessed the reasons for nondisclosure of abuse among cwd as well as proposed mitigation strategies. understanding these provides a useful framework for empowering cwd in order to expose any subsequent abuse and further develop context-specific mitigation strategies to curb abuse among persons living with disabilities. from this study, four types of abuse were identified among cwd using the who framework (who 2020). types of abuse ranged from physical abuse (corporal punishment or beating, excessive labour, stoning, pushing, rubbing of pepper on child’s body), emotional abuse (not going to school, abandonment, rejection and name-calling), sexual abuse (sexual intercourse, touching child inappropriately, exposure to adult pornography, exposure to others’ private parts) and neglect (food deprivation, lack of medical care, poor child care, neglect in education). a systematic review in west africa (covering guinea, niger, sierra leone and togo), (njelesani et al. 2018), a study by jones et al. (2012) in the united kingdom and a study in the united states of america (wildeman et al. 2014) also reported similar types of abuse in children with disabilities. reasons for nondisclosure lack of awareness on where to report cases of abuse was one of the major themes that emerged as to the reasons for nondisclosure. in the study area, there are social centres in all of the subdivisions that handle cases of abuse. however, most community members do not know about the existence of these services nor their location, and hence they do not know where to disclose to such social welfare institutions. awareness raising on where to report such cases will promote disclosure among cwd. furthermore, despite a lack of awareness of where to report, when abuse is reported to family members, especially parents, they most often do not take the necessary actions against the abuser(s) to alter their behaviour. this is aimed at protecting the family status quo, and thus the abuse continues. parental restrictive gatekeeping may hinder second or third parties from being involved in the reporting of abuse cases related to their cwd so as to prevent legal actions against a family member. another study (collings, grace & llewellyn 2016) has shown that parental gatekeeping sometimes hinders children with intellectual disabilities of their right to be heard on issues concerning their lives. childhood experts suggests that the perspectives of children with intellectual disabilities should inform social policy and research (collings et al. 2016). while it is encouraging that more children are consulted about matters of importance to them, some children’s voices remain silenced as a result of parental gatekeeping (collings et al. 2016). a further reason given by parents, key informants and some young adults for nondisclosure was the lengthy and expensive procedures. most of these children who are abused come from poor families, and at times the abusers are influential and can afford to hire lawyers to defend them. persons with disabilities may experience significant barriers to engaging with the criminal justice system, including reporting to the police and participating in investigations and court proceedings. as evident in the present study, such processes are lengthy and difficult, taking into consideration their impairment. some parents, teachers and cbr workers expressed a lack of confidence in the justice system, as reported cases of abuse are never taken seriously. according to participants, when they see abusers walking around the communities as free citizens, it discourages them from reporting subsequent cases. it was further revealed by the study that those from poor backgrounds are marginalised when it comes to dispensing justice in the region, and it is difficult for the abusers to be punished because most of the children with disabilities who are abused come from poor families. if the justice system is corrupt and leads to incorrect judgments against reported perpetrators of abuse, this might hamper subsequent disclosures. inaction by authorities within educational institutions was also given as a reason for the nondisclosure of abuse among cwd. some institutions where such abuses occur may want to preserve the name of their institutions and thus do not take action against abuse cases that occur in the institutions. a similar finding was obtained in zambia (njelesani, si & swarm 2022), where abuse perpetrated predominantly by nondisabled school peers towards disabled children went unaddressed by schoolteachers and authorities. beyond the institution level, children and young adults can be empowered to disclose cases of abuse among trusted social workers or cbr workers. stigma among children, especially young adults with disabilities, was another reason for nondisclosure. taking into consideration that sex before marriage is considered a taboo in most communities and religious organisations in the region, victims are ashamed to report when they are sexually abused. they prefer to hide it, thereby encouraging the abuser to continue with the abuse. past research (banks et al. 2017) has shown that stigma is an important factor in such abuse, which hinders reporting to the appropriate authorities. there is still a lack of understanding of people with disabilities among the wider public, and oftentimes having a disability makes them objects of jokes or fear. children with disabilities may, as a result, feel stigmatised and as such not report cases of bullying and other physical, sexual and emotional violence. threat from abusers was seen as another reason for nondisclosure. in most cases, those who abuse these children are more powerful economically and have the means to threaten them. some of these cwd from poor homes felt threatened by close contacts who provide benefits to either their parents or themselves, making it very difficult for them to disclose. inclusive training and capacity building of parents and children with disabilities are necessary so that such children and young adults undergoing any form of abuse from such abusers might be able to disclose it without fear of losing any benefits. acceptance and living with the abused was also seen as a barrier for nondisclosure of abuse in children and young adults. sometimes they may be silent, since they may have little power and less credibility as reporters of crime; they often choose to remain silent by accepting to live with the condition. beckie et al. (2011) showed that acceptance and choosing to be silent was a reason for nondisclosure. furthermore, some men are ashamed to associate with girls or women with disabilities during the day and will instead choose to sexually abuse them when they are alone. the present study’s findings also show that some parents are ‘happy’ that their children with disabilities were raped, as they are now grandparents, since few people will legally get married to their children with disabilities. in addition, as reported by some participants, some young adults with disabilities are happy that they were now parents (through sexual abuse), although single mothers. capacity building and self-esteem should be prioritised among children and young adults to see themselves as part of society with the right to marry and also have children of their own. participants had not received any form of legal redress after having reported incidents of violence perpetrated against them, despite pledges in the constitution to support people with disabilities. other studies show similar views as to the reasons for nondisclosure by children with disabilities. in a review, lyon (1996) found that threats decrease the likelihood that children will self-disclose sexual abuse. threats included physical harm to the victim and/or their loved ones (kaufman, hilliker & daleiden 1996) or forecasting negative or dire outcomes for the victim, their loved ones and/or the perpetrator. furthermore, lyon (1996) reported that younger children were less likely to disclose abuse than older children. children who are abused by a family member were less likely to disclose and more likely to delay disclosure than those abused by someone outside the family (lawson & chaffi 1992). children who do disclose during forensic interviews compared to children who do not disclose in such contexts (yet concerns remain that they have been abused) were more likely to have parents (particularly mothers) who were more supportive (mcelvaney 2013). mitigating approaches participants proposed that a multidimensional strategy should be used to carry out continuous sensitisation on the rights of children with disabilities at home, in schools and in the wider community so as to reach a diverse audience. for this to be achieved, appropriate communication channels should be used, including: community radio, schools, churches, meeting houses, cultural events and parent support groups. other avenues that have been used and should continue include national and international days reserved for disability issues. however, these sensitisations should go beyond being run once a year, as this is often not very effective, but should be done on regular bases. furthermore, most awareness-raising campaigns in the northwest region have been led by persons without disabilities, although working in the disability community. this has its limitations and the study informants think that for such sensitisation to be successful, persons with disabilities should be used as role models during awareness-raising campaigns. the research team found out from participants that a picture storybook on the study findings would be an effective sensitisation and education material and should therefore target a wide range of stakeholders. this has the potential of reaching a wider public than the sensitisation campaigns on international days, mostly attended by people who are already aware of disability issues. in effect, most books that children with disabilities access seldom have stories of adventures by children with disabilities nor do they even make reference to them. this storybook could be adapted in various versions to meet children’s, youth and adult expectations. the formation of parent support groups and capacity building was also suggested as strategies to curb child abuse among cwd. members of these parent support groups should also serve as peer educators to other parents. this will reinforce positive attitudes and provide a place to share experiences, which will help them overcome many of the challenges in parenting children with disabilities. the parent support groups could further become avenues to enhance communication skills for children with disabilities. for instance, sign language could be taught to parents and other community members to ensure easy communication with children with hearing impairment and identification of signs of rape in their children with disabilities. also, during the training of parent support groups, they should be sensitised on the need to assign responsibilities to children with disabilities that are appropriate to their age in order to prevent the incidence of child labour – also a form of abuse. putting in place child protection committees was also suggested by most cbr workers and parents as a mitigation strategy. the majority of children with disabilities who have been abused thought that if there is a reliable place where they can report abuse, they will feel comfortable reporting it. in this light, a child protection committee should be formed and trained in the communities, to whom children can report cases of abuse. such structures will be inclusive, receiving complaints from all children, including those without disabilities, and transmitting them to appropriate structures as necessary. many teachers and staff from the relevant child protection institutions recommended putting in place child safeguarding policies on abuse to be taught in schools. as part of such guidelines, child safeguarding commitments should be signed by all staff and supported with relevant training on safeguarding principles. children in schools with guidelines should be regularly educated on their rights, safety tips and procedures for reporting abuse. as part of safeguarding guidelines, friendship groups comprising children with and without disabilities should be created in schools to foster peer-to-peer support, prevent bullying, reduce stereotypes and build the self-esteem of children with disabilities. this measure has the potential to dismantle attitudinal barriers. according to some participants, their involvement in activities concerning them will help create awareness and prevent abuse in children with disabilities. hence, measures should be taken to include children with disabilities in all mainstream activities by involving them in planning, implementation and monitoring of activities that involve them. supporting education for children with disabilities is a key strategy. strategies should be put in place to ensure children and adults with disabilities are taken seriously and also given opportunities to build their own self-esteem and empowerment which may allow them to resist being abused. banks et al. (2017) propose disability-inclusive planning to prevent abuse in children with disabilities. an important part of creating lasting change will be welcoming the participation of more people with disabilities, including young people, in policymaking. many people lack knowledge and training about how to identify and respond to the unique dynamics and contexts that arise when there is abuse in cwd. misunderstanding or ignoring these unique dynamics proves costly to the safety and healing of victims with disabilities. multidisciplinary working can provide a positive context for fairness where it is well coordinated, with effective communication and information sharing. ofsted (2012) found that multi-agency support at an early stage is valuable in tackling emerging concerns about children with disabilities. staff with expertise in child protection institutions may identify concerns overlooked by colleagues with disability expertise and vice versa (ofsted 2012). work with children with disabilities is not always well-coordinated, thus increasing the danger of abuse being under-reported. child welfare professionals, parents and teachers should be aware of protective factors associated with cwd. protective factors are conditions or attributes in individuals, families or communities that can mitigate or eliminate nondisclosures that decrease the health and well-being of children and families. for example, an increased willingness on the part of parents and teachers to engage with various service professionals (a protective factor) could safeguard cwd who would otherwise be at risk of abuse (haight et al. 2013). studies show that a focus on strengths can help improve children’s self-esteem and increase disclosure of abuse. when child welfare professionals work with families of children and young adults who have disabilities, this type of strengths-based approach allows the child to feel supported and can reduce the risk of abuse as well as exposure of such abuse (lightfoot 2014). building strong, positive relationships with families and focusing on caregivers’ strengths can also improve parents’ confidence and self-esteem, which can reduce stress, risk factors of abuse and empower them to prevent or report any future abuse (algood, harris & hong 2013). conclusion this study was aimed at identifying reasons for nondisclosure of abuse in children with disabilities as well as possible mitigating strategies in the northwest region of cameroon. from these findings, reasons for nondisclosure of abuse range from lack of awareness on where to disclose, fear of poor treatment from the abusers and the acceptance of the abuse condition. several mitigating approaches were postulated from the participants which, if implemented, will avert or curb abuse of children with disabilities. these approaches advocated for policies to curb these abuses, sensitisation, capacity building on parenting and the creation of child protection committees. urgent attention is therefore needed to empower cwd so that they will be able to protect themselves from abuse and also report any abuse they experience. there is a need to reinforce policies to curb the situation and create a safer, child-friendly environment. organisations for people with disabilities should condemn and report all instances of abuse against cwd and monitor the observance of all national and international laws governing such abuse. persons with disabilities should be included in planning and decision-making platforms which concern them, as this will help create awareness on abuse and reporting of such abuses. furthermore, there is a dire need for coordination mechanisms to ensure efficient and effective implementation of all proposed interventions. recommendations for future studies limited studies are available from the literature, suggesting the need for more evidence-based research and the prioritisation of abuse of cwd by the national and global health community. apart from various reasons for nondisclosure of abuse as obtained from this study, more studies are needed to assess context-specific risk factors of abuse among cwd. study limitations there is a possibility of under-reporting of the reasons for nondisclosure of abuse because of recall bias, since this study focused on past reports and suspected abuse among cwd. however, probing and follow-up questions were asked for them to recall past experiences. acknowledgements the authors would like to express their sincere appreciation to the community respondents, school teachers, social workers working with children with disabilities and the community leaders who have contributed in making this study possible and successful. competing interests the authors have declared that no competing interest exists. authors’ contributions g.t.t. participated in the protocol development, design of the data collection instruments, supervision of data collection, review of analysis and report writing. j.c.a. participated in proposal development, data analysis and report writing. j.n. participated in proposal development, data collection and report writing. c.w.a. participated in drafting the manuscript, correction and proofreading of the scientific content. p.m.t. participated in the research process from data collection to manuscript development, read and corrected the manuscript for the scientific content. all authors read and approved the final copy of the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability qualitative data that support the findings of this study are available on request from the corresponding author. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references african charter on human and peoples’ rights (achpr), 1986, adopted 27 june 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https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/world-report-on-disability. world health organization (who), 2020, child maltreatment, viewed 28 may 2022, from https://www.who.int/news-room/fact-sheets/detail/child-maltreatment. worldometer, 2017, cameroon population, viewed 01 april 2021, from https://www.worldometers.info/world-population/cameroon-population/. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) sifiso e. mbelu department of inclusive education, college of education, university of south africa, pretoria, south africa citation mbelu, s.e., 2025, ‘power dynamics in african spirituality and disability: the south african context’, african journal of disability 14(0), a1730. https://doi.org/10.4102/ajod.v14i0.1730 note: the manuscript is a contribution to the topical collection titled ‘disability, spirituality, and belonging’, under the expert guidance of guest editors dr chioma ogochukwu ohajunwa, dr nafisa mayat and dr adele ebrahim. original research power dynamics in african spirituality and disability: the south african context sifiso e. mbelu received: 14 apr. 2025; accepted: 25 aug. 2025; published: 12 nov. 2025 copyright: © 2025. the author licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: this article explores the interplay between disability, spirituality and belonging within african spirituality in south africa. it examines how power dynamics shape the experiences of people with disabilities, focusing on how spiritual beliefs and practices can both empower and marginalise individuals. objectives: the study investigates the dual role of spirituality in the lives of people with disabilities, exploring how it can be a source of strength and a mechanism of exclusion. it aims to highlight the complexities of spiritual practices and their impact on belonging and identity among people with disabilities. method: this study employed a qualitative approach where data were collected and analysed through a comprehensive review of the existing literature on the topic. relevant scholarly sources were identified, evaluated and synthesised to extract insights and key themes. the findings were then interpreted to understand how spirituality intersects with disability and power. results: the analysis reveals that spirituality can both empower and marginalise people with disabilities. some people find strength and support in their spiritual beliefs, while others experience exclusion and marginalisation because of certain spiritual practices and power structures within their communities. conclusion: the study aims to deepen the understanding of the social and cultural dimensions of disability in south africa by unpacking the entanglement of power, spirituality and disability. it advocates for more inclusive and equitable spiritual practices that address the diverse needs of people with disabilities. contribution: this article contributes to the discourse on disability and spirituality, emphasising the need for inclusive practices that promote equity and belonging for all individuals. keywords: african spirituality; inclusion; exclusion; power dynamics; spiritual beliefs; spiritual practices; empowerment; disability. introduction african spirituality, which has its origins in the history and cultures of many african nations, encompasses a broad range of practices and beliefs that affect all aspects of the lives of south africans with disabilities (african minds matter 2025). it is deeply rooted in connections to the community, the natural world and ancestral heritage, and plays a vital role in shaping identities, values and social norms (mensah 2024). individuals seek guidance, healing and a sense of belonging within this spiritual framework, making spirituality a significant source of strength and resilience (dwadwa-henda 2023). while this study is theoretically grounded in foucault’s power and knowledge framework, it also acknowledges the contextual relevance of african indigenous knowledge systems (aiks) in shaping spiritual understandings. african indigenous knowledge systems, rooted in oral traditions and communal epistemologies, provides cultural insight into how spiritual beliefs are lived and interpreted in south african communities, particularly in relation to disability (ndlovu 2023). spirituality, broadly defined, refers to a sense of connection to something greater than oneself, often involving a search for meaning, purpose and transcendence (borawski, lipska & wajs 2025). similarly, african spirituality is deeply embedded in traditional african worldviews, where the sacred is interwoven with everyday experiences (mokoena 2025). it is relational, communal and ecological, emphasising harmony with ancestors, nature and the community (maluleka & mathebula 2022; walker-montgomery 2025). african spirituality reflects a holistic worldview that integrates the sacred into everyday life, emphasising interconnectedness with nature, community and the spiritual realm. it is deeply rooted in ancestral reverence, ritual practices and healing traditions that support psychological and communal well-being (ayinde, abiodun & makanjuola 2023). scholars such as singh and bhagwan (2020); bisset (2021): ibanga (2022); history rise (2025); mokoena (2025) and mike et al. (2025) highlight its relevance in modern contexts, noting how african spirituality adapts to contemporary challenges, including technology and social transformation. additionally, traditional beliefs continue to shape mental health perceptions and healing practices, often blending spiritual and communal approaches to care (african minds matter 2025). the relationship between disability and african spirituality is complex and evolving, demanding a thoughtful exploration of how spiritual beliefs and practices can serve as sources of both empowerment and exclusion for individuals with disabilities. by exploring these complexities, this article aims to deepen the understanding of the social and cultural aspects of disability in south africa and promote inclusive and equitable practices. the intersection of african spirituality and disability presents a multifaceted and often challenging dynamic. people with disabilities may experience both empowerment and marginalisation within spiritual contexts (hinton 2025). on the one hand, rituals, prayers and the assistance of traditional healers are common ways through which spiritual beliefs and practices can provide a feeling of purpose, support from the community and personal empowerment (mkhize 2021). on the other hand, certain interpretations of spirituality may perpetuate stigma, exclusion and discrimination against individuals with disabilities, viewing disability through a lens of spiritual deficiency, ancestral displeasure or misfortune (mugeere & swartz 2020). this complex reality is further complicated by the attitudes of society and cultural narratives that influence how people with disabilities are perceived and treated within spiritual communities. these attitudes and narratives are often deeply rooted in historical and cultural contexts, where disability has been interpreted in various ways, from being seen as a divine sign to being viewed as a curse or punishment (etieyibo 2022). in african cosmology, ancestors are revered as spiritual guardians whose influence extends into the physical realm (ifayemi 2023). consequently, disability may be interpreted as a spiritual calling, a sign of ancestral imbalance or a manifestation of unresolved communal tensions. these interpretations shape how individuals with disabilities are perceived and treated within spiritual communities (etieyibo 2022; mugeere & swartz 2020). within african spirituality, the role and influence of traditional healers and spiritual leaders is crucial in shaping people’s perceptions of disability (berhe, gesesew & ward 2024). rooted in indigenous cosmologies, traditional healers are often regarded as custodians of cultural and spiritual knowledge (bourke 2023). their practices, including rituals, prayers and divination, are not merely symbolic but serve as vital mechanisms for restoring balance and harmony within individuals and communities (quantum healing pathways 2023). these practices often involve ceremonial acts such as cleansing, offerings and invocations; in addition, they include prayers to ancestors and deities, seeking guidance, protection or healing. furthermore, music, dance and drumming are commonly used, as they are believed to induce altered states of consciousness and facilitate spiritual connection (adu-gyamfi & anderson 2019). in this context, traditional healers play a dual role: they can be sources of support and empowerment, offering healing practices that affirm the dignity and worth of individuals with disabilities (bauer, mbonani & charles 2019). however, they can also reinforce negative stereotypes and practices that marginalise and exclude people with disabilities, by interpreting disabilities as signs of spiritual deficiency or ancestral displeasure, leading to stigma and discrimination (mind 2023). galvin, chiwaye, and moolla (2023) posit that by excluding people with disabilities from rituals, believing their presence brings bad luck and use harmful practices to ‘cure’ disabilities, traditional healers may cause physical, emotional and psychological harm. according to hinton (2025), understanding the power dynamics within african spirituality is crucial for addressing the social and cultural barriers that people with disabilities face. nanthambwe and magezi (2025) further suggest that power dynamics within spiritual communities can either facilitate or hinder the inclusion of people with disabilities. for instance, the hierarchical nature of some spiritual practices may place individuals with disabilities in subordinate and inferior positions, thereby limiting their participation in family, school and communal activities (nyangweso 2021). conversely, inclusive spiritual practices that recognise and value the contributions of individuals with disabilities can promote their empowerment and social integration (rahman et al. 2021). african spirituality offers a culturally grounded lens through which to understand disability beyond biomedical or western psychological frameworks (ohajunwa, mji & chimbala-kalenga 2021). its emphasis on relationality, ritual and ancestral connection provides unique insights into how inclusion, healing and marginalisation are negotiated in everyday life (singh & bhagwan 2020). this study aims to explore the intricate power dynamics between spirituality and disability in south africa. it seeks to respond to the research question: ‘how do power dynamics within african spiritual communities influence the inclusion and exclusion of individuals with disabilities in south africa?’ the research objective is to highlight the dual role of spirituality as both a source of empowerment and a mechanism of exclusion and to advocate for more inclusive and equitable spiritual practices. by unpacking the entanglement of power, spirituality and disability, this study contributes to a deeper understanding of the social and cultural dimensions of disability in south africa, ultimately promoting a more inclusive society. historical and cultural context in south africa, the historical and cultural context of disability and spirituality is deeply rooted in traditional african beliefs and practices. historically, disability has often been viewed through a lens of superstition and stigma, with individuals with disabilities sometimes seen as bearers of misfortune or as being punished by ancestral spirits (singh & bhagwan 2020). however, this view is not universally held across african cultures. for instance, sefotho (2021), in his exploration of the basotho ontology of disability, presents a contrasting perspective rooted in ubuntu and afrocentric philosophy. sefotho (2021) highlights that among the basotho, disability is not necessarily seen as a curse or punishment, but rather as part of the human condition that is embraced within the community. the proverb ‘sehole ho ‘ma-sona ha se lahloe’ [a child with a disability is never abandoned by the mother] exemplifies a worldview that values inclusion, care and dignity, challenging dominant narratives of exclusion and misfortune. in kenya, traditional beliefs about disability vary across ethnic groups, but many communities have historically associated disability with curses, witchcraft or ancestral punishment (kippra 2020). these interpretations often result in stigma and exclusion from social and spiritual activities. however, among the luo and kikuyu, there are also beliefs that recognise individuals with disabilities as spiritually significant or chosen for unique roles (kidha 2023). increasingly, disability rights movements and inclusive religious initiatives are challenging these narratives and promoting dignity and participation (inclusive futures 2024). in ghana, disability has historically been viewed through a spiritual framework, often linked to supernatural causes such as curses or divine punishment (boateng-agyenim 2024). this scholar further maintains that this has led to exclusion from social and religious activities, especially in communities where traditional beliefs dominate. contrary, the concept of ‘biological destiny’ in some akan traditions suggests that disability is part of one’s life journey, not necessarily a punishment (appiah-sekyere 2023). faith-based and cultural organisations are increasingly promoting inclusive narratives that align with both spiritual and human rights perspectives (acrossfaiths foundation 2024). in egypt, disability has historically been interpreted through both islamic and traditional spiritual frameworks, with some beliefs linking it to divine will or spiritual imbalance (singh & singh 2024). these interpretations can lead to exclusion, especially in rural areas where traditional healers and religious leaders hold significant influence (morris & vogel 2025). however, islamic teachings also emphasise compassion and inclusion, and some sufi traditions view suffering, including disability, as a path to spiritual insight (pervez 2025). furthermore, according to dimensions uk (2025), recent disability advocacy efforts are working to reconcile cultural beliefs with inclusive practices rooted in dignity and human rights. the perceptions that individuals with disabilities are bearers of misfortune or are being punished by ancestral spirits have led to both marginalisation and exclusion within communities. however, african spirituality also offers avenues for empowerment, where spiritual practices and community support can provide a sense of belonging and resilience (musoni 2021). reflecting on the discussions across various african contexts, it becomes clear that disability discourse is gradually shifting, balancing deep-rooted spiritual beliefs with modern advocacy focused on human rights and inclusive dignity. south african context in south africa, spirituality significantly shapes how disability is understood and experienced, often reflecting a complex interplay between indigenous beliefs, christian traditions and contemporary rights-based frameworks. ned, kpobi and ohajunwa (2021) note that african indigenous worldviews may interpret disability as a result of ancestral displeasure or spiritual imbalance, particularly in rural communities, which can lead to exclusion or reliance on traditional healing practices. however, faith communities, especially christian churches, have increasingly become spaces of advocacy and support. nanthambwe and magezi (2025) argue that religious institutions can play a transformative role in disability-inclusive development, aligning with global human rights agendas and the sustainable development goals. a key indigenous philosophy shaping inclusive discourse is ubuntu, a southern african worldview rooted in the belief that one’s humanity is affirmed through relationships with others, often expressed as ‘i am because we are’ (lorenzo & sefotho 2025; motimele 2024; mutanga 2023). in the context of disability, ubuntu emphasises dignity, mutual care and social responsibility. mamukeyani (2023) highlights how ubuntu can be harnessed to reduce stigma and promote inclusive community-based disability programmes, particularly in rural areas where social workers are often the first point of intervention. bannink mbazzi et al. (2022) further argue that ubuntu-inspired inclusive education offers a culturally grounded alternative to western disability discourses. bannink mbazzi et al. (2022)’s review emphasises the importance of community involvement, shared responsibility and hospitality in fostering belonging and inclusion for disabled individuals in african contexts. similarly, lorenzo and sefotho (2025) show that ubuntu-based approaches empower women with disabilities in informal settlements by fostering collective action and spiritual resilience. mpya (2025) adds that south african indigenous religions (sairs) can both perpetuate stigma and offer ethical teachings that support inclusive education and social justice. her analysis reveals that while some traditional interpretations associate disability with spiritual impurity or ancestral displeasure, there is also a growing movement within sairs to reinterpret these beliefs in ways that affirm the humanity and dignity of persons with disabilities. mpya (2025) emphasises that this shift is particularly evident in community-led initiatives that blend indigenous ethics with inclusive pedagogies, creating culturally resonant frameworks for disability inclusion. these perspectives illustrate a dynamic and evolving discourse in south africa, where spirituality, once a source of exclusion for persons with disabilities, is increasingly being reinterpreted through inclusive frameworks. the integration of indigenous philosophies like ubuntu, alongside progressive faith-based advocacy, reflects a growing recognition that dignity, belonging and human rights must be central to how disability is understood and addressed. this shift signals a meaningful transformation in both policy and practice, where cultural and spiritual traditions are being harnessed to promote inclusion rather than marginalisation (eds. daehnhardt et al. 2024; eds. ohajunwa, dube & chitando 2025). colonial legacies the impact of colonial histories on contemporary power dynamics and spiritual practices in south africa is profound. colonialism introduced western christian ideologies that often clashed with indigenous spiritual practices (seroto 2018). missionaries played a dual role, sometimes providing education and healthcare, but also undermining traditional beliefs and practices. this legacy has left a lasting impact on the spiritual landscape, where western and african spiritual practices coexist, often in tension (seroto 2018). the same could be said about the catholic church missionaries who also played the dual-purpose role and had the lasting impact on the spiritual landscape in africa (sourou 2014). the colonial period also entrenched power dynamics that continue to influence how disability and spirituality are perceived and practised today (oliver & oliver 2017). the imposition of western norms and the marginalisation of indigenous practices have contributed to ongoing struggles for recognition and inclusion within spiritual communities. in this context, ‘spiritual communities’ refer primarily to indigenous african spiritual systems, including ancestral veneration practices, traditional healers (such as sangomas and inyangas) and community-based rituals that are deeply embedded in african cosmologies. these communities often hold holistic views of personhood and healing, which contrast with western biomedical and religious paradigms that have historically marginalised such practices. my position aligns with an inclusive and decolonial approach to spirituality, one that acknowledges the validity and richness of indigenous african spiritualities while critically engaging with western frameworks. i advocate for a pluralistic understanding that respects the epistemologies of african communities, especially in how they interpret and respond to disability. this perspective informs the paper’s broader argument for culturally grounded and spiritually inclusive models of care and recognition. a critical conceptual lens guiding this study is the notion of power dynamics within african spirituality, particularly as they relate to the agency, representation and inclusion of people with disabilities. in many african spiritual traditions, disability is often interpreted through frameworks of ancestral disapproval, misfortune or spiritual impurity (claassens, shaikh & swartz 2018; nyangweso 2021; ojok & musenze 2019). these interpretations not only stigmatise individuals but also contribute to their exclusion from spiritual decision-making and healing processes (makamure 2023; rimmerman 2024; shafik 2025). people with disabilities are frequently denied active roles in rituals or spiritual leadership, and their voices are often absent in shaping communal spiritual narratives (carter & boehm 2019). this lack of participation in societal activities reinforces dependency among people with disabilities and deepens marginalisation as they are positioned as passive subjects of spiritual judgement rather than active participants in spiritual life (eds. daehnhardt et al. 2024; manikam & mbali 2023; tarusarira & tarusarira 2023). the study expands its discussion beyond stigma to critically examine how spiritual power structures, such as hierarchical roles, gatekeeping by spiritual authorities and culturally embedded beliefs, systematically exclude people with disabilities. by unpacking these dynamics, the study highlights how spirituality can simultaneously serve as a source of empowerment and a mechanism of exclusion. it advocates for inclusive spiritual practices that affirm the dignity, agency and belonging of people with disabilities within african spiritual contexts. research methods and design this study adopts a qualitative, literature-based approach to explore the intersection of african spirituality and disability. a thematic literature review was conducted, involving the identification, selection and synthesis of peer-reviewed scholarly sources relevant to the topic. the analysis focused on extracting key themes related to empowerment, exclusion and power dynamics within spiritual communities. this method enabled a contextual and interpretive understanding of how spiritual beliefs and practices shape the lived experiences of people with disabilities in south africa. research approach this study employs a qualitative research approach, focusing on a comprehensive literature review to explore the intersection of disability, spirituality and power dynamics within the context of african spirituality in south africa. the methodology is structured around the following key components: data analysis the data analysis for this study is grounded in three theoretical frameworks: foucault’s power and knowledge theory, intersectionality as well as inclusion and exclusion theory. these frameworks provide a comprehensive lens through which to examine the power dynamics within african spiritual communities and their impact on the inclusion and exclusion of individuals with disabilities in south africa. this study employed a qualitative, literature-based approach, using thematic analysis to interpret and synthesise existing scholarly work. the literature search was conducted using academic databases such as google scholar, scopus and ebscohost, focusing on peer-reviewed articles, book chapters and policy documents relevant to african spirituality, disability studies and social inclusion. keywords used in the search included combinations of terms such as ‘african spirituality’, ‘disability in south africa’, ‘power dynamics’, ‘spiritual exclusion’ and ‘inclusive practices’. to ensure relevance and depth, the search was categorised according to: thematic relevance (e.g. empowerment, exclusion, belonging) geographic focus (south africa and broader african contexts) theoretical alignment (sources engaging with power, intersectionality or inclusion and exclusion frameworks). sources were then reviewed and coded based on recurring themes and discourses, such as spirituality and disability, empowerment through spirituality, community integration and support, and exclusion and marginalisation. these themes were interpreted through the selected theoretical frameworks to uncover deeper insights into the lived experiences of people with disabilities in spiritual contexts. foucault’s power and knowledge theory was applied to examine how spiritual authority and communal beliefs shape perceptions of disability. this helped reveal how spiritual practices can reinforce hierarchical power structures, sometimes leading to marginalisation. intersectionality was used to explore how overlapping identities, such as gender, class and cultural background, influence the experiences of individuals with disabilities. as an example, the study by lorenzo and sefotho (2025), which draws on participatory action research conducted over several years, highlights how ubuntu can both empower and transform social identities and development opportunities for women with disabilities. intersectionality highlighted how multiple layers of discrimination intersect within spiritual communities. inclusion and exclusion theory provided a lens to analyse the mechanisms through which individuals are either integrated or excluded from spiritual and social participation. this included examining cultural beliefs, rituals and policy frameworks that either support or hinder inclusion. the integration of these theoretical frameworks into the thematic literature analysis enables a detailed and critical exploration of the intricate relationship between spirituality, power and disability in the south african context. this approach ensures that the analysis is both systematic and interpretive, enhancing the coherence and depth of the findings. it also emphasises the importance of balancing cultural respect with the pursuit of inclusive and socially just practices. ethical considerations intellectual property and copyright all sources used were properly cited to respect and acknowledge the intellectual property rights of the original authors. bias and representation a diverse range of perspectives was used to avoid selective bias in choosing literature. this helped to present a balanced view and ensured the fairness and comprehensiveness of the research. accuracy and integrity honesty and integrity were upheld in reporting findings by representing the data accurately and not manipulating the information to fit preconceived ideas. transparency methods to select literature: relevance: the literature that was selected was directly relevant to the research topic and research question. date range: the focus was on reviewing literature that was not older than 10 years to ensure the inclusion of recent developments. search strategy: the databases and search engines used to find the literature were google scholar, pubmed, psycinfo and scopus. methods for analysis: thematic analysis: used to identify themes. comparative analysis: findings from different studies were compared to identify similarities and differences and these were discussed. critical evaluation: the quality and rigour of the studies that were reviewed were evaluated through comparisons that were made. synthesis of findings: the findings from multiple sources were integrated to create a coherent narrative by highlighting important insights. framework application: three theoretical frameworks were used to guide the data analysis. results this section explores emerging patterns identified in the reviewed literature on disability and african spirituality. the results section is organised around interlinked areas of focus that reveal both empowering and exclusionary dimensions, including spirituality and disability, empowerment through spirituality, community integration and support, exclusion and marginalisation, broader african cultural contexts, current practices and policies in south africa, and synthesis of findings. spirituality and disability in many african communities, disabilities are often viewed through the indigenous spiritual lens, attributed to ancestral displeasure or spiritual deficiencies (ned et al. 2021). in south africa, this perception remains prevalent in many communities (ndlovu & nyoni 2021; nseibo et al. 2022), often leading to stigma and exclusion. however, recent scholarship offers a more complex view. ohajunwa and mji (2018) argue that african indigenous spirituality, rooted in relational and collective identity, can also serve as a source of resilience and well-being. similarly, ned et al. (2019) and ned (2021) highlight that indigenous communities often interpret disability through frameworks of spiritual imbalance and communal disharmony, which can lead to healing practices aimed at restoring spiritual and social equilibrium. traditional healers and spiritual leaders, therefore, hold significant authority in shaping community perceptions of disability (berhe et al. 2024). their influence can either reinforce stigma or promote acceptance, depending on the interpretive frameworks they employ. integrating traditional healing with modern healthcare practices offers a pathway towards holistic and culturally sensitive care (shange & ross 2022). by acknowledging both the risks and the potential of indigenous spiritual beliefs, it becomes possible to foster inclusive environments where individuals with disabilities are supported not only medically but also spiritually and socially (menze et al. 2018; mugeere et al. 2020). empowerment through spirituality spiritual beliefs and practices play a significant role in providing a sense of belonging and empowerment for individuals with disabilities in various african communities. for instance, in swaziland, indigenous beliefs often depict people with disabilities as full human beings with the same rights and responsibilities as others, promoting their social inclusion and well-being (ndlovu 2016). rituals and community support, such as those found in african traditional religions, can foster a sense of belonging by integrating individuals with disabilities into communal activities and ceremonies (etieyibo 2022). additionally, studies have shown that spirituality helps individuals with disabilities cope with their conditions, offering solace and a platform for reflection (hodge 2019; taher et al. 2025). this spiritual framework not only enhances their self-perception but also influences how others view and treat them, thereby empowering them within their communities. the integration of individuals with disabilities into spiritual practices can affirm their dignity and worth, providing them with a supportive network that recognises their contributions and strengths. this empowerment through spirituality can lead to greater self-confidence and resilience, enabling individuals to navigate the challenges they face with a sense of purpose and belonging. community integration and support the role of spirituality in community integration and support for people with disabilities cannot be overemphasised. spiritual communities often provide a sense of belonging and identity, which is crucial for the well-being of individuals with disabilities (venkatesan 2025). in many african cultures, communal activities and rituals, such as initiation rites, ancestral ceremonies and seasonal festivals, are central to social life. the inclusion of individuals with disabilities in these practices can significantly enhance their social integration (shodipo 2019). for example, in some traditional communities, individuals with disabilities are invited to participate in drumming, storytelling or spiritual healing roles, which affirm their value and spiritual significance. similarly, faith-based organisations have developed disability ministries that offer spiritual mentorship, communal prayer and leadership opportunities, thereby reinforcing a sense of identity and belonging. such inclusion not only benefits the individuals but also educates the community about the value and capabilities of people with disabilities. by participating in spiritual and communal activities, people with disabilities can build meaningful relationships and gain social recognition, which can counteract the stigma and isolation they might otherwise experience (scoles 2021). furthermore, spiritual leaders and community members can advocate for the rights and inclusion of individuals with disabilities, fostering a more inclusive and supportive environment. this advocacy can lead to changes in attitudes and practices, promoting a culture of acceptance and respect for diversity within the community. exclusion and marginalisation recent studies have highlighted the complex relationship between spirituality and disability, particularly within the south african context. mashau and mangoedi (2015) explored how faith communities in tshwane (south africa) often inadvertently perpetuate social exclusion among people with disabilities, despite their potential role as agents of transformation. the research conducted by mashau and mangoedi (2015) revealed that individuals with disabilities frequently experience marginalisation within religious settings, which can exacerbate feelings of isolation and neglect. similarly, amukelani (2023) discussed the challenges faced by people with disabilities in rural areas, emphasising the role of traditional beliefs and the lack of adequate support systems. the necessity of organised disability programmes that use ubuntu methodology to promote empowerment and inclusion was highlighted by studies that were conducted by mutanga (2023), motimele (2024) and lorenzo and sefotho (2025). additionally, studies on the migration of mothers from zimbabwe to south africa with children with impairments have shown how traditional and religious beliefs can have a positive or bad impact on how people with disabilities are treated (tarusarira & tarusarira 2023). broader african cultural contexts across various african countries, traditional beliefs often frame disability through spiritual or supernatural lenses, contributing to both stigma and resilience. in nigeria, disabilities are sometimes seen as spiritually caused, yet inclusive rituals and advocacy efforts foster empowerment (shodipo 2019). in zimbabwe, cultural views of disability as curses persist, but community-based rehabilitation and non-governmental organisations (ngos) interventions are promoting inclusion (unesco office in harare & united nations partnership to promote the rights of persons with disabilities 2020). similarly, in kenya, beliefs linking disability to witchcraft are being challenged by education and advocacy campaigns (bauer et al. 2019; mugo & kamau 2023). in ethiopia, spiritual interpretations of disability coexist with inclusive practices supported by organisations like ethiopian center for disability and development (ecdd) (unhrc 2022). in egypt, historical acceptance contrasts with modern stigma, although legal reforms and ngo efforts aim to improve inclusion (ead 2023). these examples illustrate how cultural beliefs across africa can both marginalise and empower individuals with disabilities, offering a broader context for understanding the south african experience. current practices and policies in south africa a comprehensive understanding of current practices and policies in south africa necessitates a careful examination of both spiritual traditions and legislative frameworks, especially in relation to the experiences of individuals with disabilities (claassens et al. 2018). on one hand, african spiritual communities offer complex and often contrasting experiences, serving as spaces of inclusion and empowerment while also perpetuating exclusion through entrenched traditional beliefs (knoetze 2019). on the other hand, the policy landscape in south africa provides a robust framework aimed at dismantling these barriers, promoting inclusive spiritual participation and affirming the rights and dignity of persons with disabilities (department of women, youth and persons with disabilities 2020). together, these subheadings, ‘spiritual communities’ and ‘policy landscape’, highlight the dynamic interplay between cultural practices and institutional efforts, revealing both the challenges and opportunities in fostering spiritually inclusive environments across the region (thomas & veerabathiran 2025). spiritual communities: within african spiritual communities, current practices impacting individuals with disabilities are multifaceted. on one hand, these communities often serve as vital support networks, offering a sense of belonging and resilience through communal worship and spiritual guidance (mugeere et al. 2020; sele & wanjiku 2024). as an example, in south africa, some indigenous spiritual communities rooted in ubuntu philosophy actively promote inclusion by recognising people with disabilities as full members of the spiritual collective (mpya 2025). on the other hand, traditional beliefs can also perpetuate stigma and exclusion. in certain rural south african contexts, disabilities are interpreted as ancestral imbalances or spiritual afflictions, leading to exclusion from rituals such as initiation ceremonies or healing gatherings (dwadwa-henda, mji & ohajunwa 2025). similarly, in nigeria, some pentecostal and traditional religious groups associate disability with spiritual punishment, which can result in social isolation (etieyibo & omiegbe 2023). despite these challenges, inclusive practices are emerging. in ethiopia, community-based spiritual healing rituals have been adapted to include people with disabilities, with traditional healers working alongside disability advocates to ensure participation (baheretibeb, wondimagegn & law 2024). in ghana, healing ceremonies involving drumming, dance and ancestral invocation are increasingly being modified to accommodate physical impairments, allowing broader participation in communal spiritual life (boateng-agyenim 2024). these examples illustrate the dual role of african spirituality: while it can empower individuals through communal support and spiritual affirmation, it can also marginalise them when exclusionary beliefs and practices prevail. addressing these tensions is essential for fostering inclusive spiritual spaces that affirm the dignity and belonging of all individuals. policy landscape: in south africa, a range of policies and initiatives aim to promote inclusion and equity for persons with disabilities. central among these is the white paper on the rights of persons with disabilities (department of social development 2015), which provides a comprehensive framework for ensuring the rights and inclusion of individuals with disabilities across all sectors, including spiritual and religious communities. it explicitly calls for the removal of barriers to access and participation, the protection of rights and the promotion of empowerment (rainford, naidoo & sibanda 2023). although often interpreted through a socio-economic lens, these policies also carry significant implications for spiritual empowerment. as noted by the national council for persons with disabilities (ncpd 2023), the white paper mandates inclusive practices in both public and private institutions – including places of worship and traditional healing spaces – thereby enabling persons with disabilities to reclaim spiritual belonging and participate fully in rituals, ceremonies and leadership roles that were previously inaccessible (eds. daehnhardt et al. 2024). in this way, policy becomes a mechanism of empowerment, actively challenging exclusionary spiritual norms and promoting inclusive theology and practice (nanthambwe & magezi 2025). complementing this framework is the promotion of equality and prevention of unfair discrimination act (2000), which seeks to eliminate discrimination and promote equality. this legislation explicitly addresses the needs of persons with disabilities, ensuring protection from unfair treatment and affirming their right to equal participation in all aspects of life, including spiritual domains (kok 2017). in contexts where disability continues to be interpreted through stigmatising spiritual beliefs, this act serves as a legal safeguard against marginalisation, reinforcing the right to spiritual dignity and inclusion (kok 2017). the south african constitution (republic of south africa 1996) further underpins these protections. section 9 guarantees equality before the law and prohibits discrimination on various grounds, including disability. this constitutional provision is foundational in shaping inclusive policies and practices and offers a legal basis for challenging spiritual exclusion rooted in cultural or religious beliefs (south african human rights commission 2023). beyond formal legislation, ngos and advocacy groups play a critical role in translating policy into practice. these entities raise awareness and provide resources to support inclusive spiritual practices. for example, mpya (2025) highlights how ngos engage with traditional and religious communities to foster inclusive spiritual spaces. organisations such as disabled people south africa (dpsa) and the south african human rights commission (sahrc) are instrumental in advocating for the rights of persons with disabilities and ensuring their voices are heard in spiritual and cultural contexts. these organisations often work directly with religious leaders and traditional healers to promote inclusive theology and ritual practice (mnukwa 2023). by addressing these challenges and fostering a deeper understanding of disability issues, south africa can continue to make strides towards a more inclusive and equitable society, one in which individuals with disabilities are spiritually empowered and fully integrated into all aspects of life, including religious and traditional communities (imafidon & baker 2020). the policy landscape thus serves not only as a legal framework but also as a transformative tool for reshaping spiritual spaces and dismantling marginalising power structures. comparative findings the literature reveals a complex and multifaceted relationship between african spirituality and disability, marked by both empowering and exclusionary dynamics. this complexity highlights the importance of a thoughtful and context-sensitive approach to understanding how spiritual beliefs and practices influence the everyday realities of people with disabilities in south africa. spirituality often serves as a source of strength, resilience and belonging for individuals with disabilities (hodge & reynolds 2019; stewart-brown 2018). african indigenous spirituality, rooted in relational and collective identity, fosters a sense of belonging and purpose (van breda 2019). similarly, ubuntu, as a guiding philosophy, promotes interconnectedness and mutual care, which can enhance inclusion and dignity for people with disabilities (lorenzo & sefotho 2025). faith communities frequently provide emotional support, advocacy and social networks that help individuals navigate the challenges of disability (dlamini, poliah & govender 2025). in addition, spiritual practices such as prayer, ritual and meditation offer psychological comfort and reinforce self-worth (chen 2024). moreover, african-centred social work frameworks emphasise the importance of spirituality in healing and empowerment, advocating for culturally grounded interventions (bent-goodley, fairfax & carlton-laney 2017; chioneso et al. 2020). the indigenous understanding of spirituality positions the self within a relational–collective framework, which can be particularly affirming for people with disabilities (singh & bhagwan 2020; udah et al. 2025). these frameworks challenge western individualistic paradigms and offer alternative models of inclusion rooted in community and shared humanity (van breda 2019). however, exclusionary dynamics are equally prevalent. certain spiritual and religious beliefs perpetuate stigma, associating disability with sin, divine punishment or spiritual impurity (faris & wane 2019 murove 2024;). these narratives can lead to ostracism and discrimination, severely impacting mental health and reinforcing feelings of shame and social isolation (chen 2024; letsoalo & tsabedze 2024). the symbolic language and rituals of african spirituality, while rich in meaning, can also reinforce exclusion when disability is framed as a deviation from communal norms (obodoegbulam 2025). social exclusion is not only psychological but also structural. many places of worship lack accessibility, and religious leaders may be unaware of disability issues, resulting in unintentional marginalisation (lorenzo & sefotho 2025). the lack of inclusive infrastructure and awareness within spiritual communities highlights the need for disability-sensitive education and advocacy (vergunst & mckenzie 2022). comparative insights across african contexts reveal that while ubuntu and indigenous spirituality can be inclusive, their application is not uniform. in some communities, ubuntu is interpreted in ways that exclude women and people with disabilities from full personhood (van breda 2019). this highlights the tension between idealised communal values and lived realities. while western religious frameworks often emphasise individual salvation, african spirituality tends to prioritise communal harmony. this difference can either support or hinder inclusion, depending on how disability is perceived within the collective (faris & wane 2019). in conclusion, the dual role of spirituality, as both a source of empowerment and exclusion, demands a critical re-evaluation of spiritual practices and beliefs. promoting inclusive spirituality requires challenging discriminatory narratives, enhancing accessibility and fostering deeper awareness of disability within spiritual communities (carter 2021). by embracing the transformative potential of ubuntu and indigenous knowledge systems, african societies can move towards more equitable and empowering spiritual landscapes. discussion this discussion interprets the findings of the study in relation to existing literature and theoretical perspectives, highlighting their implications for understanding power dynamics in african spirituality and disability: the south african context. theoretical framework this article is grounded in three theories, and those are foucault’s power and knowledge theory, intersectionality as well as inclusion and exclusion theory. foucault’s power and knowledge theory: foucault’s power and knowledge theory provides a valuable framework for understanding the complex interplay between spirituality, disability and power dynamics in south africa. according to foucault, power and knowledge are inextricably linked, with power shaping what is accepted as knowledge and knowledge reinforcing power structures (pitsoe & vladutescu 2024). in the context of african spirituality, this theory can be used to analyse how spiritual beliefs and practices both empower and marginalise individuals with disabilities. within african spiritual communities, traditional healers and spiritual leaders often hold significant authority, shaping the community’s understanding of disability (mokgobi 2014). their interpretations of spiritual knowledge can either empower individuals with disabilities by providing them with a sense of purpose, community support and personal empowerment through rituals and prayers, or marginalise them by perpetuating stigma and exclusion. for example, in rural eastern cape, individuals with disabilities are often excluded from traditional initiation ceremonies such as ulwaluko, based on beliefs that their impairments reflect ancestral displeasure or spiritual impurity (sipungu 2025). this exclusion not only denies them access to key cultural rites of passage but also reinforces their marginalised status within the community, as participation in such rituals is closely tied to social recognition and adulthood. similarly, traditional healers in soweto interpret mental illness through spiritual frameworks, attributing it to ancestral or social imbalance and treating it through rituals such as bone throwing, steaming and herbal remedies (shange & ross 2022). shange and ross (2022) further posit that these practices reflect a collectivist worldview where the healer’s interpretation of ‘why things happen’ becomes the dominant narrative, shaping communal responses to disability and reinforcing the healer’s spiritual authority. thus, spiritual knowledge in these contexts is not neutral, it is deeply embedded in power relations that can either empower individuals with disabilities through inclusion in healing and ritual practices or marginalise them through exclusion and stigma. in rural kwazulu-natal, traditional health practitioners (thps), including izangoma [diviners], inyangas [herbalists] and abathandazi [faith healers], hold significant spiritual authority and are deeply embedded in community life. their interpretations of illness and disability are shaped by ancestral calling and indigenous knowledge systems, which often define what is considered spiritually legitimate or deviant (ngubane & de gama 2024). for instance, individuals with psychosocial disabilities may be interpreted as spiritually ‘called’ or ‘imbalanced’, depending on the healer’s worldview. this framing can lead to either empowerment, through inclusion in healing rituals and spiritual roles, or marginalisation, when disability is viewed as a sign of ancestral displeasure or spiritual impurity. the power of thps to define and treat disability within spiritual frameworks reinforces their role as gatekeepers of communal knowledge, shaping access to healing and inclusion. as such, their authority exemplifies foucault’s notion of power and knowledge, where spiritual interpretations of disability are not neutral but serve to regulate inclusion and exclusion within the community. foucault’s concept of biopower is relevant in understanding how spiritual authority in rural kwazulu-natal governs individual bodies and community norms (lemke 2020). traditional health practitioners, such as izangoma, inyangas and abathandazi, often interpret disability through spiritual frameworks, such as ancestral calling, witchcraft or spiritual imbalance. these interpretations can lead to ritual interventions that either reintegrate individuals into the community or mark them as spiritually deviant. for example, individuals perceived as having failed to heed an ancestral calling may be excluded from communal activities until they undergo ukuthwasa [initiation] (makhathini et al. 2024). conversely, those who successfully complete spiritual rites may gain elevated status as healers. personal narratives reveal that while spirituality can offer healing and identity, it can also impose normative expectations that marginalise those whose disabilities are not spiritually legitimised (oxhandler et al. 2021). thus, african spirituality operates as a form of biopower, both empowering and regulating bodies through culturally embedded practices. in the end, this study’s application of foucault’s power and knowledge theory emphasises the necessity of more inclusive and equitable spiritual practices. by challenging and reconfiguring the power relations that marginalise individuals with disabilities, the study advocates for a deeper understanding of the social and cultural dimensions of disability in south africa, promoting a more inclusive society. intersectionality theory: kimberlé crenshaw’s intersectionality theory offers a framework for comprehending how different social identities such as race, gender, disability and spirituality intersect to produce distinct experiences of privilege and oppression (collins & bilge 2020). in the context of african spirituality and disability in south africa, intersectionality theory can be used to analyse how multiple axes of identity and power dynamics interact to shape the lived experiences of individuals with disabilities. people with disabilities in south africa often navigate complex layers of identity, including spiritual beliefs, cultural background, ethnicity, gender and social status (garry 2021). these intersecting identities can result in compounded forms of marginalisation or empowerment. for instance, in rural kwazulu-natal, individuals with disabilities who belong to minority ethnic groups, such as amahlubi or amabhele, may encounter exclusion within dominant christian spiritual communities that prioritise zulu-centric norms and practices (hamilton & wright 2017). these barriers can manifest in limited access to leadership roles, exclusion from healing rituals or being deemed spiritually ‘unfit’ because of cultural differences. conversely, traditional healing systems led by izangoma or abathandazi often provide more inclusive spaces where spiritual identity and disability are interpreted through ancestral calling, offering individuals both recognition and community support (nicolson & allan 2019). to some individuals with disabilities, their initiation as izangoma not only affirms their spiritual identity but also elevates their status within their community, countering previous experiences of marginalisation (ngubane & de gama 2024). this study aimed to determine how the interplay of several identities affects the power dynamics within african spirituality by utilising intersectionality theory. it draws attention to the necessity of considering the complexity of people’s experiences as well as the ways that many types of privilege and oppression interact to influence their lives. the social inclusion and exclusion theory: the ‘social inclusion and exclusion’ theory is highly relevant to this study as it provides a framework for understanding how spiritual beliefs and practices within african communities can either facilitate or hinder the inclusion of individuals with disabilities (saloojee & saloojee 2021). by examining the factors that contribute to social inclusion or exclusion, this theory helped to identify the mechanisms through which spiritual practices empower or marginalise people with disabilities in south africa. it highlighted the role of community norms, cultural beliefs and power dynamics in shaping the lived experiences of individuals with disabilities. applying this theory allowed the study to critically analyse how inclusive or exclusionary practices are constructed and maintained, and to advocate for more equitable and inclusive spiritual practices that promote the well-being and social integration of people with disabilities. interconnectedness of theories: foucault’s power and knowledge theory, intersectionality theory and the social inclusion and exclusion theory are interconnected in their examination of power dynamics, although they approach the topic from different angles. foucault’s theory focuses on how power shapes knowledge and vice versa, emphasising the role of authoritative discourses in constructing social realities (bowman 2023). intersectionality theory, on the other hand, emphasises the interconnectedness of various social identities and how they collectively influence experiences of power and oppression (eds. hankivsky & jordan-zachery 2019). the social inclusion and exclusion theory examines the factors that contribute to the inclusion or exclusion of individuals within social systems, highlighting the role of community norms and cultural beliefs (mhlanga & ndhlovu 2023). in the context of this study, these theories collectively provided a comprehensive understanding of the power dynamics at play. foucault’s theory helped to analyse how spiritual knowledge and practices are constructed and maintained by those in positions of authority, whereas intersectionality theory revealed how these practices impact individuals differently based on their intersecting identities, such as race, gender, disability and spirituality. the social inclusion and exclusion theory, on the other hand, further elucidates how these power dynamics and intersecting identities contribute to the inclusion or exclusion of individuals with disabilities within african spiritual communities. together, these theories offer a nuanced perspective on the ways in which power operates within african spirituality, shaping the experiences of people with disabilities and highlighting the need for more inclusive and equitable practices. comparative analysis different studies on the interplay between disability, spirituality and power dynamics in african spirituality reveal both alignments and divergences. for instance, dwadwa-henda (2023) emphasises the role of xhosa rituals in shaping perceptions of disability, highlighting both empowering and marginalising effects. in contrast, the motitswe (2025) special collection focuses on the broader african context, examining how various spiritual practices influence the sense of belonging for individuals with disabilities. methodologically, dwadwa-henda employs qualitative analysis of personal narratives, while the special collection includes a mix of qualitative and quantitative studies. theoretical approaches also vary, with some studies using foucault’s concept of power and knowledge, while others apply intersectionality theory. these differences reveal inconsistencies in how spiritual practices are perceived and their impact on disability, highlighting the need for more comprehensive, context-specific research to address these gaps. critical evaluation existing studies on the interplay between disability, spirituality and power dynamics in african spirituality reveal both strengths and weaknesses. methodologically, the diversity of approaches, including qualitative analyses of personal narratives (dwadwa-henda 2023) and mixed-method studies (motitswe 2025), enriches the understanding of these dynamics. theoretical foundations, such as foucault’s concept of power and knowledge, and intersectionality theory, provide robust analytical lenses. however, many studies have limited scopes, focusing on specific communities or practices, and often employ small sample sizes, limiting generalisability. for example, lorenzo and sefotho (2025) focus on women with disabilities in informal settlements in cape town, munjanja and hendricks (2025) examine institutional support at two eastern cape universities with only 15 participants, and a springerlink study (niemiec & tomasulo 2023) explores spirituality among 12 adults with disabilities, all within narrowly defined contexts. findings synthesis the existing literature on disability, spirituality and power dynamics within african spirituality reveals a complex and often contradictory interplay between empowerment and marginalisation. for instance, singh and bhagwan (2020) highlight the therapeutic potential of african spirituality, including zulu rituals, in social work and community health. practices such as ancestral prayer and sacrificial rituals are shown to foster a sense of empowerment and spiritual connection for individuals with disabilities. similarly, ngubane-mokiwa (2021) critically engages with ubuntu, highlighting its significance as a foundational concept in zulu culture. while ubuntu promotes collective care and community support, potentially creating inclusive spaces for people with disabilities, it can also perpetuate exclusion when disabilities are interpreted as spiritual afflictions or ancestral displeasure. this duality reveals a persistent conflict between cultural interpretations of disability and inclusive approaches. further, dwadwa-henda (2023) and contributions from the african journal of disability (2025) reinforce this dual role of spirituality, showing that while spiritual frameworks can offer emotional and communal support, they may also reinforce stigma and exclusion through entrenched cultural narratives. these studies, although varied in scope and methodology, consistently point to the need for critical engagement with spiritual practices that both uplift and marginalise. this article contributes to the existing body of work by offering a comprehensive and integrative analysis of power dynamics within african spiritual communities, specifically focusing on the lived experiences of people with disabilities in south africa. unlike previous studies that often concentrate on specific communities or practices, this study examines a broader spectrum of spiritual traditions and incorporates larger and more diverse samples drawn from a wide range of literature. moreover, the study distinguishes itself by applying three intersecting theoretical frameworks, foucault’s power and knowledge theory, intersectionality as well as inclusion and exclusion theory, to guide the thematic analysis. this multi-theoretical approach enables a deeper understanding of how power operates within spiritual contexts and how it influences inclusion and exclusion (omodan 2024). by synthesising findings across diverse sources and perspectives, the article advocates for more inclusive and equitable spiritual practices that honour cultural traditions while challenging discriminatory beliefs. conclusion this study demonstrates that african spirituality simultaneously embodies empowering and exclusionary dimensions for persons with disabilities. while practices rooted in ubuntu and indigenous cosmologies can enhance belonging and resilience, hierarchical power relations and traditional interpretations often perpetuate stigma and exclusion. the findings highlight the importance of fostering inclusive spiritual practices that affirm dignity, accessibility, and participation. future research should expand empirical inquiry into diverse african contexts, and policy frameworks must integrate spiritual inclusion as a key component of disability rights. in doing so, both research and policy can advance a more equitable and decolonial understanding of spirituality and disability in south africa. acknowledgements competing interests the author declares that no financial or personal relationships inappropriately influenced the writing of this article. author’s contribution s.e.m. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the author declares that all data that support this 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abstract literature review conceptual framework methods findings discussion limitations conclusion acknowledgements references footnotes about the author(s) heather m. aldersey department of rehabilitation therapy, faculty of health sciences, queen’s university, kingston, canada ansha n. ahmed school of public health, college of health science, addis ababa university, addis ababa, ethiopia haben n. tesfamichael department of occupational therapy, faculty of health sciences, queen’s university, kingston, canada natasha lotoski department of occupational therapy, faculty of health sciences, queen’s university, kingston, canada citation aldersey, h.m., ahmed, a.n., tesfamichael, h.n. & lotoski, n., 2020, ‘needs of families of children with intellectual and developmental disabilities in addis ababa’, african journal of disability 9(0), a735. https://doi.org/10.4102/ajod.v9i0.735 research project registration: project number: traq 6025906 original research needs of families of children with intellectual and developmental disabilities in addis ababa heather m. aldersey, ansha n. ahmed, haben n. tesfamichael, natasha lotoski received: 03 apr. 2020; accepted: 07 oct. 2020; published: 09 dec. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: family support is an essential component of caring for children with intellectual or developmental disability (idd), however, specific family support needs in developing countries, such as ethiopia, have received minimal attention in the literature to date. objectives: this study sought to understand the specific disability-related support needs of families with children with idd in addis ababa, ethiopia. we answered the following questions: (1) how do family members of children with idd in the mekaneyesus centre in addis ababa currently meet their disability-related support needs?; (2) what are these family members’ most pressing unmet disability-related needs? and (3) how do family members perceive their capacity to meet their support needs? method: this study drew from an exploratory qualitative descriptive approach with 16 family members of children with idd, recruited from a centre for children with idd. we conducted semi-structured interviews in amharic. we transcribed and translated interviews into english and guided by a conceptual framework for family support from kyzar et al. (2012), we thematically analysed the data. results: participants identified instrumental and emotional needs to be most prominent, with additional discussion around various physical and informational needs. participants identified childcare as the most significant unmet need, which resulted in the loss of various important life roles. the participants discussed major sources of support coming from spirituality, family members and community. stigma emerged as a critical family support theme external to the kyzar et al. (2012) classifications of family support. conclusion: although family members are adapting and responding to meet their needs in the best way they can, additional support, particularly related to childcare and future planning, is essential. keywords: addis ababa ethiopia; africa; family needs; family; intellectual and developmental disabilities; spirituality; children. literature review families have the primary responsibility of promoting the overall development and health of their children by fulfilling physiological and emotional needs whilst providing adequate material resources for the child to develop and grow (berger & font 2015). for individuals with intellectual and developmental disabilities (idds), the family unit is integral to secure opportunities for its members to participate meaningfully (wingspread family support summit 2011). according to wang and brown (2009), previous literature has demonstrated the profound impact of disability on families, and that children with disabilities are served best when professionals collaborate directly with families and provide ongoing family support. we define family support as: a set of strategies directed to the family unit but that ultimately benefit the individual with idd. family support strategies are intended to assist family members, who have a key role in the provision of support and guidance to their family members with idd. these strategies are designed, implemented and funded in a flexible manner that addresses the emotional, physical and material well-being of the entire family. (wingspread family support summit 2011:2) literature has found that regardless of origin, families of children with disabilities face significant financial and emotional difficulties and are generally dissatisfied with the current disability services and support that they are provided (wang & brown 2009). a synthesis conducted by kyzar et al. (2012) found that family support significantly enhanced family functioning, quality of life, satisfaction and buffering of stress. although research has explored the idea of family support in families with disabilities, the data are insufficient as the majority of research was conducted in the united states of america and the united kingdom (kyzar et al. 2012; turnbull et al. 2007; wang & brown 2009). furthermore, the international association for the scientific study of intellectual and developmental disabilities (iassidd)special interest research group on quality of life has historically consisted of a diverse cultural group of researchers but without many from countries in africa (wang & brown 2009). whilst assessments, interventions and necessary services are limited in most of africa, the majority of research conducted continues to focus on high-income caucasian families and fails to explore the important aspects of family support in families with disabilities (malcolm-smith et al. 2013). according to turnbull et al. (2007), the significant lack of diversity in family and disability research is highly problematic and future research must concentrate on the development of collaborative partnerships with participants from culturally and linguistically diverse backgrounds. although there are often shared experiences that we hear from families across different locations, every country has unique features within its social and cultural contexts that can shape the experiences and support needs of people with disabilities (pwds) and their family. to provide further insight about common and unique aspects of support, it is critical to understand family-support needs within a given context. for example, we cannot assume that family experiences of disability and support are the same in addis ababa as they would be in cape town or accra – as such we need empirical data to better understand and address this issue in a way that is relevant to the local context. the current literature suggests that future family support research must strive for data from non-native english-speaking countries, including fathers and other family members in addition to mothers (schlebusch, dada & samuels 2017) and incorporate specifics of ethnicity, employment and income of participants (kyzar et al. 2012). kyzar et al. (2012) also recommend more research about the effects of professional support on families, as the majority of current studies narrow their focus to informal supports, such as friends and family. despite being few in number, studies in africa about family-support needs related to idd indicate challenges of caregiving and a scarcity of support services for both the children and family members (masulani-mwale et al. 2016, 2019). these studies portray that having children with idd often results in marital difficulties, mental health issues and high degrees of stigma from the community. there has been limited research on these issues in ethiopia. the united nations convention on the rights of persons with disabilities (uncrpd), which promotes human rights and inclusion of people with disabilities, was ratified in ethiopia in 2010 (federal democratic republic of ethiopia 2012), committing the country to uphold the rights of children with idd for education, safety and inclusion. according to the world health organization (who) (2011), the prevalence of disability in developing countries such as ethiopia is 17%, however the exact prevalence of people with idd in the ethiopian context is unknown. individuals with idd in ethiopia are supported formally – predominantly through physiotherapists and mental health providers, such as psychiatric nurses and psychiatrists (tekola et al. 2016). according to tekola et al. (2016), the expertise and services provided by these professionals are limited to government and private clinics, specialised schools and centres and community-based rehabilitation (cbr) programmes. the focus on these services alone implies a predominantly medical-model approach to idd in this context, rather than the human rights approach espoused by the uncrpd. there is limited existing literature in ethiopia that explores the impact of support from specialised schools and centres for children with idd and their families. tekola et al. (2016) reported that specialised centres are an integral part of service provision in autism-related services, and this is supported by the experiences of families in tanzania, as reported by mcnally and mannan (2013). specialised centres provide a wide array of therapies focusing on social, academic, communicative and activities of daily living (adl) functioning, in addition to engaging in disability awareness-related initiatives (tekola et al. 2016). an example of a specialised centre in addis ababa, ethiopia is the ethiopian evangelical church mekaneyesus centre for mentally challenged children (eecmy-cmcc), which has provided rehabilitation and education services for individuals with idd since 1986. an email from the director of the centre (b. zurgie, pers. commun., 10 march 2020) confirmed that the centre provides services for individuals from 3 months old to adults, and the services provided include early intervention, montessori classes, pre-vocational and vocational classes for about 400 children with various disabilities (i.e. mainly children with idd, cerebral palsy, spina bifida and malnutrition).1 the centre provides support at no direct cost to the family. beneficiaries of the centre are from diverse religious backgrounds and the function of the centre is independent from the church-based services; however, the management system and financial support are under the church. this study aims to describe how family members of children with idd in the mekaneyesus centre currently meet their disability-related support needs. by exploring the met and unmet needs of family members, we gain a deeper understanding of the lives of the families and caregivers in an ethiopian context. specifically, we sought to answer the following questions: (1) how do family members of children with idd in the mekaneyesus centre in addis ababa, ethiopia currently meet their disability-related support needs?; (2) what are these family members’ most pressing unmet disability-related support needs? and (3) how do family members perceive their capacity to meet their disability-related support needs? the results provide insight into the experience of family members of children with idd, and help to create an understanding about their needs in the context of a developing world. conceptual framework kyzar et al.’s (2012) synthesis of the global family support literature organises results based on four types of support: emotional, physical, instrumental and informational. emotional support refers to any support that results in better affective and psychological well-being by reducing stress and other negative emotions. physical support entails assistance in day-to-day functioning, including adls. instrumental support refers to assistance in terms of access to financial resources and undertaking important duties of the family, such as childcare. informational support refers to the provision of information in different formats to make informed decisions about the disability (kyzar et al. 2012). this study used the kyzar et al. (2012) classifications of support to assist in framing the interview questions. we also used this to help shape preliminary analytical discussions around the findings. although we viewed our findings in light of this pre-existing classification, we were also attuned to any results that emerged inductively that were relevant to the research questions but not wholly in alignment with the existing framework. methods we conducted this study using an exploratory qualitative descriptive approach (sandelowski 2000). specifically, we recruited 16 family members from the mekaneyesus centre for mentally challenged children in addis ababa, ethiopia to participate in semi-structured interviews. participants were included if they were: (1) 18 years of age or older, (2) self-identified as a family member of a child with idd and (3) were able to converse in amharic. we excluded participants who were caregivers of children with idd but who did not self-identify as a ‘family member’. we recruited participants purposively, striving for diversity in representation of gender (both male and female), socioeconomic status (low, medium, high), education status of participant, family role (e.g. not just mothers) and nature or severity of the child’s disability. firstly, all potential participants who met the study inclusion criteria were identified through discussion with the centre director, teachers and physiotherapy professionals working in the centre. once potential participants who might meet the recruitment criteria were identified, the centre director approached them to inquire about their willingness to speak with the data collector for research related to their child or family member with a disability. parents who indicated an interest to participate and who met the desired individual characteristics of our purposeful sampling were contacted by a researcher to explain the study and the content of the informed consent form. all participants were given the opportunity to choose where they would like the interview to take place, with all electing for a quiet and separate room at the mekaneyesus centre. in total, we approached 17 interested individuals and one individual was ultimately unable to join the study because of scheduling conflicts during the time of data collection. all participants provided written informed consent prior to the commencement of the interview. participants did not receive compensation for their participation in the study. we conducted all interviews in amharic using a semi-structured interview guide. we also asked preliminary demographic information of the families prior to commencement of the study. it is important to note that although centre staff identified people who had children with idd as potential participants, we asked the family members themselves to characterise what they believed to be the severity of their child’s disability once they agreed to take part in the study. we did not evaluate or assess official diagnoses. each interview session was audio-recorded and ranged from 30 to 64 min. table 1 provides the semi-structured interview guide used in the interviews. table 1: interview questions. once the primary data collector, with another co-author, believed that the study had reached adequate information saturation, she then interviewed two more participants for better confidence and stopped after the 16th participant. we transcribed interviews verbatim into amharic and amharic transcripts were later translated into english by two bilingual experts, following appropriate procedures for data protection and confidentiality. we imported all transcripts into nvivo12 qualitative data analysis software and coded thematically using braun and clarke’s (2006) approach to thematic analysis. two authors coded the amharic transcripts directly and two authors coded the english translations of the transcripts. we coded both deductively based on the kyzar et al. (2012) classifications and inductively to identify any themes that might fall outside the classifications. all authors met regularly to discuss and agree on a coding guide and, ultimately, to harmonise and finalise emerging themes. ethical consideration ethical approval to conduct the study was obtained from the general research ethics board, queen’s university, reference number: grhbs-123-19. findings a total of 16 participants took part in the study, including nine mothers, five fathers, one adoptive mother and one aunt of a child with idd. table 2 gives additional information about the demographics of the participants. given our limited capacity for diagnosis or assessment, we included participants who self-identified as having a family member with idd and used self-reports for the severity of the disability (i.e. we did not assess the disability of the family member in this study). table 2: participant demographics. family support needs as stated above, the categorisation developed by kyzar et al. (2012) guided the conceptual framing of the identified family support needs of participants in our study. whilst this framework provided a structure for the organisation of our themes, it is important to acknowledge that whilst we tried to distinguish between them, the identified needs were, sometimes, significantly intertwined – for example, needs were interrelated within categories (e.g. not having childcare affected the family’s finances) and across categories (e.g. families needed emotional supports because of burden created by instrumental-support needs). we have also identified one theme (stigma) that might not be fully captured in the kyzar et al. (2012) classifications. instrumental instrumental needs such as childcare and workplace flexibility, financial support, transportation and future planning were the most prominent themes in the data. childcare every participant stated in some form or another that the childcare available in addis ababa was insufficient for children with disabilities. participants explained that there is simply a lack of childcare centres for children with disabilities, and that the existing centres are either over their capacity, or geographically and financially inaccessible. ‘the important thing is there are no day-care centres. there are not even private day-care centres that we could pay for. no matter how much money you are willing to pay, there are no centres that take [a child with] such a case and give treatment also.’ (participant 2) because of the significant lack of childcare in addis ababa, participants stated that they are often unable to fulfill their responsibilities as workers and students, missing school and work to care for their children. many participants explained that they had to quit their jobs in order to meet the care demands of their child. ‘i had planned to study nursing but suddenly [my child] became sick and she was admitted to yekatit [hospital] for 10 days. so i missed the registration for the school and just attended to the needs of my child. when i went there, they told me that the registration deadline had passed … we all started to think about what will happen if she becomes sick when i go to school; so we all agreed that i need to stay at home and take care of her until she reaches school age.’ (participant 15) ‘my wife had a profession but she quit work because of our child. she [my wife] is now a housewife … she studied computer science and she used to work at an ngo. after she [our child] was born, our job became to wander around looking for services.’ (participant 11) some participants asserted that managing their responsibilities as an employee was extremely difficult whilst having a child with a disability. many participants expressed that their workplaces were not flexible in supporting their unique needs and they mentioned their need to get a job that can enable them to work whilst still providing care for their child with disability (e.g. workplace daycare or work done alongside the child). in fact, many participants stated that their employers terminated them when they requested time off to attend necessary medical appointments for their children. for example, participant 1 was terminated after being 10 min late for work whilst taking the child to the hospital. some participants suggested that the government has the responsibility to meet the childcare and unique service needs of families with disabled children in order to facilitate their ability to maintain employment. for example, 10 of the 16 participants were adamant that the government could provide better childcare services for children with idd. in addition to the impact on work and school roles, lack of childcare also significantly affected the social roles of some participants. these participants explained that they were required to reduce their participation in social activities in order to stay home and care for their child. ‘… after stopping working … [my wife] is living with psychological stress. even if you have nothing to eat or drink, just spending some time with others helps you to withstand all this. it has something good. but after this child was born, it is only this centre that she comes to. she has no other place to go. her friends who used to call her have disappeared and her families are in the countryside.’ (participant 16) the participants explained that whilst many of them gave up important life roles to stay home and care for their child, there are still times in which they must leave the house, in which they often make the difficult choice of leaving their child alone at home. this results in fear and concern for participants, in regard to the safety of their child. ‘sometimes when i come here, i have to restrain my child and leave him alone. you could not ask your neighbours to look after him. if my son was well, you could leave him with neighbours … but when i come here, i am so worried whether he falls out of his wheelchair, or gets electrocuted.’ (participant 14) whilst many participants expressed that their unmet-childcare needs result in personal sacrifice of productive roles in the community, it must be stated that some participants expressed that the centre met their unique childcare needs. additionally, participants stated that their family members as well as community members often provided childcare support. financial support ten participants explained that they experienced significant financial hardship because of unmet financial-support needs. these participants explained that having a child with idd demands additional expenses for necessary medication and treatment. participants explained that they spend the majority of their income on their child with idd. ‘we spent all the money that we had at hand for the medication, in the end we remained empty handed.’ (participant 1) whilst the majority of participants expressed financial difficulties, they stated that when these financial needs were met, they were often met by their extended family members. other participants mentioned explicit acts of kindness by community members such as taxi drivers, hospital workers and fellow church-goers, who informally gave them money to help with costs related to the child with idd. ‘it is my sister. i live on her … we have nothing other than my sister’s support. she shares with us from her limited income and resources.’ (participant 14) ‘it is the passersby that bought him milk when they saw me walking carrying him. everyone would like to help me pay for our taxi expenses when we travel.’ (participant 1) transportation the theme of transportation arose from the data as an important unmet instrumental need, referring to the difficulties that participants were having in transporting their children to the centre. nine participants explained finding transportation to specialised schools or centres in addis ababa was extremely difficult and inconvenient for their daily schedule, as it was unaffordable and both geographically and physically inaccessible. one participant explicitly stated that she could not use public transportation because it was not wheelchair accessible. participants reported that when they could not meet their transportation needs, they carried their children significant distances by foot in order to ensure attendance at the centre. future planning ten participants identified planning for the future as another important unmet instrumental need. planning for the future refers to arranging support and plans for the children as they surpassed the age of 18 and as the participants themselves became less able to care for them. participants indicated that existing services are available for children, but the service options became quite sparse when children surpassed the age of 18. ‘until 18 or 20 years old and up to that they will have training. after that they will leave the centre but what will be done after he leaves the centre … what will i do after he becomes 18 years old? i have no capacity to do anything. usually, i am worried about it.’ (participant 5) the participants explained that there is a complete lack of financial security for the future of their children. they explained that this resulted in feelings of worry and fear in regard to the future trajectory of their children. whilst participants explained that planning for the future was an unmet support need, they did express interest in forming regular meetings with other families experiencing the same situation. participant 14 stated that families with children with similar disabilities formed a peer support organisation that hoped to register legally and create small businesses to support themselves. emotional many participants demonstrated unmet emotional needs, as indicated by feelings of hopelessness. they expressed a profound amount of stress and difficulty resulting from having a child with a disability, and this resulted in unique emotional needs. these participants expressed a loss of hope, faith and aspiration following the birth of their children with idd. one participant explicitly stated that he had attempted suicide because of the situation for which he sought treatment and counselling. ‘your mind becomes sick, as a human being you lose your hope….’ (participant 6) ‘after this child came to our life, things are not easy. i am overwhelmed.’ (participant 9) following the birth of their disabled child, mothers, in particular, indicated that their emotional needs were not met. four mothers shared that their husbands left them because of the emotional struggles faced from having a child with a disability. ‘i suffered a lot. even my husband assumed that as if i created her with my hands [am the reason for the disability]. i had a lot of challenges. finally he walked away.’ (participant 6) ‘yes, my husband isn’t there … he abandoned me because of the child … on the 14th day after the child was born, he was asked to donate blood to the baby, he refused saying why do i give blood for a child that couldn’t recover … after that, what kind of life can you have with this person? i lost all of my hope in him.’ (participant 14) furthermore, many participants indicated that their extended family members did not meet or support their emotional needs. these participants stated that they were ridiculed, discriminated against or witnessed blatant insults directed at their child. ‘my family told me not to bring her [my child] to their house … you may not believe this but when i took her there one day, my brother saw her and said, “you idiot – you came here” … i will never forget that time. i just went to another room not to create more mess.’ (participant 6) most participants consider peer support groups to be important in helping the family members cope through difficult times. they mentioned the importance of discussion and sharing of their ideas and experiences with other family members. however, our results demonstrated that the family members used peer-groups to meet their instrumental support needs more than their emotional needs. conversely, some participants, however, explained that their immediate and extended families did sufficiently support their emotional needs. ‘i tell her [my wife] that the money that we get by both of us working might not be blessed [although being plenty]. on the other hand, even with only my salary, we are missing nothing. we are leading our family and we never get hungry or thirsty. we need to understand that. we don’t know if a person that is affluent has what is in us. we need to be thankful as we are healthy and living with what we have.’ (participant 11) other participants explained that connecting with others in the community and sharing their stories helped them to meet their emotional needs. healthcare professionals also provided some participants with feelings of hope. despite the stigma surrounding them, many participants in this study focused on asserting themselves in their narratives, indicating that this made them feel better about their situation. ‘there are mothers that remain at home. i have already come out, so i have nothing to be afraid of or be ashamed of. i would be happy if the majority of mothers come out to the community and are seen by the public. we shouldn’t get ashamed of it because it is god’s will and whether we are ashamed or not, nothing changes. it never changes. before i used to feel ashamed, but i don’t care about that now.’ (participant 10) the preceding quote also demonstrates the remarkable role that spirituality has in meeting the emotional needs of participants. all 16 participants stated that spirituality helped them to cope with their situation of having a child with idd. these participants explained that their spirituality and religious beliefs in a higher power helped them maintain a positive outlook on their situations. additionally, several participants believed their child was brought to them by god, and that therefore they must be thankful. ‘i tell my family or the community that this is what god gave me. it is not me who brought it. if god wants, he can give it to everybody by knocking their door. this is how god tests his own people. if i can’t stay strong, i will not be blessed. i don’t bring it in purpose but it’s god who gave me. you must not be a person who is thankful when getting his wishes and complaining when things do not go his way … it is god who he knows what may happen tomorrow.’ (participant 14) ‘we laugh at everything. we laugh loudly. people say what makes you laugh like this since you have two disabled children. i replied to them that my fate is in the hands of god. you can’t inhibit me from laughing because god himself will stretch his hands to my children.’ (participant 3) informational many participants stated that they were unaware of many, if any disability-related services for families with children with disabilities, indicating an unmet informational support need. eight participants explicitly stated that they heard of the mekaneyesus centre by chance, by word of mouth. participant 2 was the only participant to state that the government had recently created a disability awareness campaign in which wheelchairs were also provided to very few individuals with mobility issues. one participant mentioned that a community-based rehabilitation worker provided the information about an available service. ‘some people tell me there are organisations everywhere that give support. they asked me whether i received support from three organisations … god is my witness that i know no such places. even i brought him here when a health extension worker who was providing house to house vaccination saw him and insisted that i should bring my child here.’ (participant 1) in terms of information related to diagnosis of disability, some participants stated that this information was promptly and accurately provided by healthcare professionals, whilst others explained that receiving the information took a long time and was inaccurate. two participants (participants 6 and 15) explained that it could take up to 4 years to receive a diagnosis. conversely, three participants (participants 9, 14 and 16) explained that they were given diagnostic information immediately upon being in contact with a health professional. physical physical needs of participants are tangible items such as medications, treatment, food and support with adls. many participants mentioned a plethora of unmet physical needs. whilst participants identified an extensive range of unmet physical needs, some stated that their needs were met by support from their families as well as the centre itself. participants explained that their families often provide help with adls and the centre provides food and other material goods. furthermore, the government provided some essential equipment in the treatment process that fulfilled the needs of family members. ‘my family may god bless them. my sister especially never distastes him. when she comes to my home, she washes and dresses him. she makes him look good. no disregarding at all.’ (participant 14) ‘i cannot say government doesn’t support us at all … the wheelchairs were given to woreda2 and for very few people with severe mobility problems.’ (participant 2) stigma – external to kyzar et al. (2012) framework as previously stated, we organised our data through the needs framework outlined by kyzar et al. (2012); however, our data shed light upon a theme, stigma, which could not easily be included in one of the four categories of family needs. it is important to highlight the theme of stigma as an individual theme because it had a profound impact on the lives of many of the participants we interviewed, and helps us to understand family needs in this context. twelve participants expressed facing significant stigma in their lives, manifested in different forms. they expressed a need to reduce the stigma that they experienced as a result of the family member with idd. some participants felt stigma in the form of exclusion from community events, whilst others explicitly stated that neighbours told their children to stay away from and not play with children with disabilities. for example, one participant (participant 14) described an incident in which her son was excluded from a birthday party because of his disability. ‘my social life after i gave birth to him [son with idd] reduced a lot. my neighbor had a birthday party and she said send your daughter after dressing her … she said send your daughter not send your children.’ (participant 14) other participants explained that the stigmatisation and discrimination they faced were a result of commonly held beliefs within the community in regard to disability, including the idea that disability is a curse or is created in response to a sin. stigma affected family needs in a range of ways – including related to creating distress for the family and need for emotional support, and affecting a family’s ability to use public transportation or meet their financial needs. discussion our study illustrates the plethora of family support needs of families with children with idd in addis ababa, ethiopia. through the application of the kyzar et al. (2012) support classifications, we were able to organise the various needs as emotional, informational, instrumental and physical support needs, and we added the stigma classification. the most prominent themes that arose from the data were related to instrumental and emotional support needs. the instrumental family support need of childcare was unquestionably the most significant unmet need, resulting in caregivers sacrificing their own employment or education. in addition to childcare, transportation and future planning were significant unmet instrumental family support needs. the lack of sufficient means of transportation within addis ababa prevented many families from receiving necessary disability-related services, whilst the inadequate provision of future planning services for families and children with idd produced feelings of uncertainty and fear related to the unknown life trajectory of their child. in regard to unmet emotional needs, participants described that having a child with idd combined with limited instrumental support left them with extreme levels of hopelessness and stress. however, many participants explained that their family members and strong spirituality helped them to manage these significant emotional support needs. it is clear from this description of needs that the categories are highly interrelated (e.g. limited instrumental support resulted in further emotional support needs). the findings of this study provide further evidence that although there are unique aspects of the family experience of disability in addis ababa, many of the family support needs and experiences are highly similar to those of families all around the world. this provides further substantiation that the kyzar et al. (2012)’s classifications for support are globally relevant for families despite the support context. furthermore, we believe that stigma is a universal challenge for families of children with disabilities, although it may be enacted and experienced in different ways across cultures. from a theoretical perspective, our results align with various global understandings of disability. for example, as it relates to the international classification of functioning (icf) (who 2001), our findings demonstrated that family members experienced a range of restrictions to their participation in daily activities. moreover, from a social-model perspective (oliver 2013), families were effectively disabled by a society that was not accommodating their specific needs as it related to transportation, childcare and workplace accommodations. the significant lack of childcare services and facilities within addis ababa was the most pressing unmet disability-related support need of families with children with idd. in terms of childcare, it is imperative to consider approaches to reduce the caregiving responsibilities of family members. the government could contribute either by developing childcare services in close proximity to family homes, or by advocating for the inclusion of childcare services within workplaces. as many of our participants agreed, they are willing to assist in sharing the responsibility of childcare with whatever organisation takes the responsibility of establishing a childcare service. this sort of peer-support arrangement, where families work together to support one another to provide childcare is a potential support intervention to explore. it is also important to reflect on the fact that many participants advocated for special childcare, specific to children with disabilities. this may be because we recruited participants who were currently receiving support at a segregated centre. it is, however, important to note that providing separate day-care centres for children with disabilities runs counter to global calls for inclusion of children in mainstream settings, and may actually contribute to increased stigma for these children and families. in exploring and advocating for solutions, we would encourage families, support providers and the ethiopian government to explore how children with disabilities could be better accommodated within existing mainstream childcare options. the effective use of existing resources facilitated through community-rehabilitation workers working in rural areas could help alleviate the childcare issues faced by families. community-based rehabilitation is defined by the who, international labour organization (ilo) and united nations educational scientific and cultural organization (unesco) as a community development strategy in which rehabilitation, provision of equal opportunities as well as social inclusion are the central goals for individuals with disabilities (who, ilo & unesco 2004). community-based rehabilitation is implemented through the collaboration of individuals with disabilities and their families as well as community organisations, the government, educational, vocational and social services (who et al. 2004). additionally, cbr may provide peer support groups, which were of interest to this study’s participants, and which may be one way to begin to address the issue of childcare support. beyond childcare support, families expressed that sharing their personal experiences with other families experiencing the same situations would help them learn from one another, but they explained that there is a significant lack of existing peer support groups. literature on the continent of africa (and globally) has identified a number of strategies for how families can be better supported. these include parentcaregiveror familyadvocacy and support groups, family income generation and poverty alleviation and community mobilisation (aldersey, turnbull, & turnbull 2016; bunning et al. 2020; mcconkey, kahonde & mckenzie 2016; mckenzie & chataika 2018). studies, such as that by marimbe et al. (2016) in zimbabwe examined needs for family caregivers of people with mental health issues and found that peer support groups provided families with opportunities to support one another and enhance coping abilities (marimbe et al. 2016). peer support groups allow for interaction and sharing amongst family members confronted with similar caregiving challenges (mittelman et al. 2006). we believe that many of these approaches would also be relevant ways to increase support for the families depicted in this study. community-based rehabilitation (cbr) programs may also be a way to improve support for families in this context as well. a qualitative study by hansen, musonde and van der veen (2014) examined the perceived support that mothers of children with disabilities in zambia received from cbr programmes. they found that the mothers in their study appreciated the cbr services they received because of the support provided in the areas of social participation, mobility, provision of equipment and educational and emotional support (hansen et al. 2014). mothers explained that the cbr programmes provided ongoing emotional and financial support groups which were extremely beneficial, and that cbr was looked to as having an advocacy role in terms of advocating for accessible schools and financial support in order to fund the education of their children (hansen et al. 2014). other studies from various parts of africa, such as hartley et al. (2005) in uganda, have found that caregivers identify educational opportunities for their children with disabilities as a significant need, however the financial and geographical inaccessibility of the available schools results in these needs being unmet. as it relates to currently meeting their needs, it is notable that spirituality emerged as the most prominent way in which families presently meet their disability-related support needs. participants discussed spirituality in a wholly positive light in this study. we believe that the significant degree of reliance on spirituality highlights the coping abilities of these families. as described by krupa et al. (2016), coping is a self-regulating process of managing adversity and demands that exceed an individual’s abilities. when individuals cope, they overcome psychosocial disturbances in order to navigate and implement their own resources to adapt to challenges (abiola, udofia & abiola 2011). across the literature, the use of spirituality as a positive coping mechanism has been well documented amongst families and caregivers of those with disabilities (hatun et al. 2016; masuku & khoza-shangase 2018; mcnally & mannan 2013). beighton and wills (2017) found that the use of spirituality as a coping mechanism provided parents with feelings of comfort because of having faith that god had purposely gifted them a child with a disability. furthermore, families often believe that because their disabled child is a gift from god, it is their moral duty to care for them (hatun et al. 2016). in an african-specific context, spirituality has been expressed as a strong belief in a higher power which allows families of children with disabilities to interpret and cope with their situation in the way of understanding it as out of their immediate control, but rather in the hands of god (masuku & khoza-shangase 2018; mcnally & mannan 2013). studies specific to ethiopia, such as that by fenta and boon (2018), have stated that many individuals believe that their lives are under the control of a higher power. we believe that the positive coping strategy of spirituality amongst our participants is one aspect of their resilience, which is explained to be the state of optimal self-regulation through successful and effective coping (compas et al. 2001). because of the significant attention our participants brought to the importance of spirituality, we believe that future research should explicitly explore the role of spirituality in relation to coping with unmet family support needs of families with children with idd in developing countries. the families in this study demonstrated various strategies that they used to support their family needs. they discussed coping with the immense psychological stress resulting from caring for children with idd and managing to navigate the external factors in order to acquire money, treatment and resources for their children. in a community with scarce availability of childcare, transportation and treatment services, the families persevered to care for their children utilising their own resources as well as whatever help they could obtain from their families, communities and health professionals. the participants sacrificed their own important roles and managed to live in spite of the stigma that they faced, reiterating the findings of hartley et al. (2005), and most of them demonstrated the willingness to become active agents in their lives to provide for themselves. our study also aligns with the work of green (2007) who demonstrated that caregivers with children with disability sacrifice their own time and needs in order to meet the needs of their child, restricting their own participation in social, leisure and employment opportunities which do not accommodate their diverse needs. whilst they identified a profound amount of unmet financial support needs, most of the participants did not communicate a desire for charity or pity from others. rather, they demonstrated the desire to work and gain their own financial capital, as portrayed by efforts to establish peer organisations. the majority of participants stated strong aspirations for paid employment, but explained that the insufficient provision of childcare services in addis ababa restricted them. other studies have portrayed the impact of caregiving in restricting family members from engaging in livelihood and social activities (dogbe et al. 2019; paget et al. 2016). the scarcity of childcare for children with disabilities in addis ababa seems to exclude a number of individuals from financially contributing to the ethiopian economy. respite care has been identified as one possible solution to alleviate the burden of care on families with family members who have disabilities (van exel et al. 2006). the introduction of respite care within ethiopia could, therefore, be a potential way to support families with children with idd. future studies should explore childcare solutions for families in this context. in particular, it would be interesting to understand to what extent mainstream pre-schools, nurseries and schools accept these children into their classes and if staff have the appropriate skills and attitudes to do this. if there are gaps in inclusion practice, future advocacy may seek to find ways for these children to be included and appropriately supported in these settings. although we attempted to organise our data according to the kyzar et al. (2012) classification of needs, it is critical to acknowledge that the theme of stigma emerged outside (and seemed to cut across) the four main categories of support needs. many participants stated that the misconceptions surrounding the origin of idd resulted in discrimination from participating in productive and societal roles. stigma in our study was a cross-cutting issue and was reflected in negative societal responses as families attempted to navigate their support needs such as taking public transportation or trying to access childcare. the findings from our study regarding stigma are not unexpected, as existing disability literature has demonstrated a relationship between disability and stigma in highmiddleand low-income countries. in the african context specifically, mcnally and mannan (2013) found stigma and discrimination demonstrated against children with idd in the form of laughing, staring or avoiding the child altogether. aldersey (2012) uncovered narratives of support for killing a child with idd because of community stigma in tanzania. within ethiopia itself, family members of children with disabilities have reported withholding their child’s condition from society because of the stigma they faced, resulting in heightened feelings of stress and depression (tilahun et al. 2016). stigma is a critical issue that complicates discussions of family support, and future research should explore the relationships between stigma and family support more deeply. finally, we strongly believe that it is not simply enough to identify the needs of families, rather we see this study as the first step in a longer-term engagement with the centre and the families it supports. our initial plans to act on study findings had to be postponed because of the covid-19 pandemic; however, we are actively working to initiate further participatory action projects with direct engagement of participants as soon as it is safe and appropriate to do so. limitations this study was conducted in one centre in addis ababa, and therefore the findings may represent the family support needs explicit only to this area and may not be generalisable to the whole population of ethiopia. for example, family members in rural and semi-urban areas of ethiopia may, because of their smaller locations that might allow a greater development of community, experience less need for support around access to childcare and transportation. future studies should, therefore, explore the family support needs of children with idd in diverse rural and urban settings within ethiopia. moreover, this study included families who were already accessing some support at a centre. future studies might also include the perspective of families outside formal support settings for greater insight. additionally, this study relied on external characterisations of the severity of the family member’s disability; therefore, this classification is subjective. however, the purpose of this study was not to assess or diagnose children with idd, and we believe that the subjective classification of the severity still gives useful insight into the family situation, as the family perceives it. study participants had family members with a great variability in age – future studies with more tightly defined inclusion criteria for ‘family member’ may have resulted in more nuanced findings specific to a particular age group. additionally, we relied on the centre staff to identify potential family member participants. therefore, there is a risk that there may have been some bias that we were not able to identify at the level of family identification and recruitment for the study, however, we do not believe this to be the case, based on the varied participants provided who had varying degrees of communication ability and levels of criticality. finally, it is important to reflect on the potential limitation that language may have for this study. although the interviews were translated and transcribed by two amharic-speaking individuals, there is always potential for a loss of meaning in translation. therefore, it is possible that some ideas may not perfectly translate to english. nevertheless, we have intentionally embedded language considerations throughout this study (e.g. having the two amharic speakers code in the source language and using this as a further check on the english translations) to reduce the potential limitation that might arise from challenges in translation. conclusion this study has demonstrated that the instrumental need of childcare is the most pressing unmet need amongst family members at the mekanyesus centre, followed by transportation and future planning. unmet emotional support needs resulted in stress and hopelessness for some participants but many participants met their needs through strong spirituality and support from family. the remarkable influence that spirituality had on all 16 participants cannot be overstated, and this finding correlates with previous literature regarding resiliency. although facing a wide array of hardships, including significant stigma within their community, study participants demonstrated a strong desire to meet their family needs and contribute to society. as such, many families framed support as a tool that would further enable them to actively meet their own responsibilities of contributing to their family and society (rather than support as a handout). based on participants’ perspectives, priority family support may take the shape of childcare centres that provide future planning information as well as peer support groups for families with children with idd in addis ababa, ethiopia. the findings of this study also support the development of policies to improve transportation and workplace flexibility, and introduce respite care to better meet the needs of families of children with idd. in accordance with the ethiopian government’s commitment to the uncrpd, these family perspectives demonstrate that there are important actions that the government and community could take to better promote and uphold the rights of children with disabilities. acknowledgements the authors would like to sincerely thank all the family members who participated in this study. competing interests the authors have declared that no competing interest exists. authors’ contributions h.a. co-designed the study, supported the data collection and coordinated and supported the analysis and write-up. a.n. co-designed the study, collected the data and supported the analysis and write-up. h.t. contributed to the analysis and write-up. n.l. contributed to the analysis and write-up. funding information the research received funding from the first author’s canada research chair research stipend. data availability statement data would be made available upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or 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developmental disabilities, viewed 22 january 2020, https://ucedd.waisman.wisc.edu/wp-content/uploads/sites/74/2017/05/wingspread.pdf world health organization (who), 2001, international classification of functioning, disability and health: icf, world health organization, viewed 13 november 2020, from https://apps.who.int/iris/handle/10665/42407 world health organization (who), 2011, world report on disability, who, viewed 13 february 2020, from https://www.who.int/disabilities/world_report/2011/report.pdf world health organization (who), international labour office (ilo) & united nations educational, scientific and cultural organization (unesco), 2004, cbr: a strategy for rehabilitation, equalization of opportunities, poverty reduction and social inclusion of people with disabilities, viewed 07 march 2020, https://www.ilo.org/wcmsp5/groups/public/---ed_emp/---ifp_skills/documents/publication/wcms_107938.pdf footnotes 1. in this study, families used various terms to describe their child with idd, for example, just impairment_ ‘gudat’ or in a way that is related to idd, a mental health problem/psychiatric condition/illness ‘aemiro zigmet or himem’ and sometimes they would speak specifically of autism and ‘aemiro zigmet’ when referring to their child’s disability. 2. woreda: the name of a geographic location in ethiopia that is part of a region, but has smaller towns within it. abstract introduction research methods and design discussion conclusion acknowledgements references about the author(s) elizabeth o. george centre of diaconia and professional practice, vid specialized university, oslo, norway ruth l. bartlett faculty of health studies, vid specialized university, oslo, norway school of health sciences, university of southampton, southampton, united kingdom citation george, e.o. & bartlett, r.l., 2024, ‘religion and the everyday citizenship of people with dementia in nigeria: a qualitative study’, african journal of disability 13(0), a1338. https://doi.org/10.4102/ajod.v13i0.1338 original research religion and the everyday citizenship of people with dementia in nigeria: a qualitative study elizabeth o. george, ruth l. bartlett received: 23 sep. 2023; accepted: 06 feb. 2024; published: 31 mar. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: research on the lived experience of dementia is burgeoning across the social and health sciences. yet, very little is still known about the experience of dementia for many tribes and ethnoreligious groups, as most studies are conducted in western countries. objective: the aim is to advance the understanding of the role of faith and prayer in the lives of people with dementia in nigeria through a lens of everyday citizenship. method: interviews were conducted with 17 older people with dementia in a low-income, yoruba-speaking community in southwestern nigeria. after transcription, the data were analysed thematically. results: the major theme identified in participants’ accounts was that prayer served as a space for active and agentic participation. this theme was further elaborated upon through four subthemes: (1) agency in routine and daily prayer, (2) cognitive (re)framing through prayer, (3) prayer as a vehicle for active social interaction and support, and (4) prayer as work and transaction. conclusion: participants described religious practices as important to their acceptance of the situations, their feelings of hope in everyday lives, and their connection and contributions to the community. analysis also shows the centrality of relationality in the everyday experiences of people with dementia. contribution: this article contributes to advancing the understanding of the socially orientated everyday experience of dementia. it contributes to a small body of literature on the social aspect and everyday experiences of living with dementia in africa and stands out as the first of its kind study in nigeria. keywords: dementia; citizenship; religion; africa; lived experience. introduction dementia is one of the leading causes of disability among older people globally (world health organization 2021). dementia is an umbrella term for a collection of symptoms caused by neurological conditions affecting the brain and impacting memory, thinking, behaviour, and emotion. the most common form of dementia is alzheimer’s disease, affecting 50% – 60% of people with dementia (alzheimer’s disease international 2023). other forms include lewy body dementia and vascular dementia. the cognitive and physical impairments caused by dementia are long-term and constitute a disability under the united nations convention on the rights of persons with disabilities (crpd) (un general assembly 2007). it is estimated that 55 million people live with some form of dementia, with more than 60% in lowand middle-income countries (who 2021). evidence suggests that there are over 2.13 million living with dementia in sub-saharan africa, with a projected increase of 257% by 2050 (guerchet et al. 2017). research to date has focused on finding a cure and understanding the biomedical markers and impacts of living with dementia (guerchet et al. 2017; world health organization 2021). medicalised understandings of dementia have dominated the global scientific community for decades (fletcher 2023; kitwood 1997). in africa, while dementia remains generally mischaracterised and underdiagnosed in the general public (adebiyi et al. 2016; brooke & ojo 2020), within dementia scholarship, dementia is dominantly approached as a ‘disease’ whose cause, prevalence, and clinical management need to be understood and addressed (see, e.g., amoo et al. 2011; olakehinde et al. 2019; yusuf et al. 2018). while this work is important, it positions people with dementia only as ‘patients’ with a health condition, so broader understanding of how people with dementia navigate the experience is lacking. in recent years, efforts to understand the lived experience of dementia have improved as the perspectives and voices of people with dementia are increasingly sought. however, most of this work has been conducted in the west (notably canada, the uk, australia, and nordic countries); the lived experience of dementia among tribes and ethnoreligious groups is notably absent from this scholarship. take, for example, the impressive set of meta-syntheses involving a review of 169 articles in total related to the lived experience of social relations (eriksen et al. 2016), space (førsund et al. 2018), and time (eriksen et al. 2021) among people with dementia; not one of the included studies were conducted in an african country, and only three were conducted outside the west (in china, iran, and pakistan). only a handful of researchers have sought the perspectives of people with dementia living in africa (see, e.g., agyeman et al. 2019; hindley et al 2017; m’belesso et al. 2016). to the best of our knowledge, none of these studies have been conducted in nigeria. this article, thus, fills a gap in knowledge by exploring, from the perspectives of people with dementia, their experience of living with dementia in nigeria. in nigeria, there are several significant limitations to dementia research, care, and policies (adeloye et al. 2019; nwakasi et al. 2021). statistics show that the number of nigerians with dementia is increasing, with an estimated increase of over 400% between 1995 and 2015 (adeloye et al. 2019). however, there is no national strategy or action plan for dementia care and support in nigeria (ayinde & ogundele 2019). while nigeria is a signatory to the crpd, people with dementia are not included in disability rights activism in nigeria. in addition, dementia-related scholarship in nigeria appears to be skewed towards medical approaches (e.g., amoo et al. 2011; ochayi & thacher 2006; olakehinde et al. 2019). while socially orientated perspectives on dementia in nigeria are evident, they mainly focus on the views of caregivers and community members (adebiyi et al. 2016; nwakasi et al. 2021; yusuf & baiyewu 2012), with the perspectives of people with dementia significantly missing. studies conducted in nigeria and africa have highlighted religion’s role in the (predominantly negative) perception of and attitudes towards people with dementia (brooke & ojo 2020; hindley et al. 2017; ogunniyi et al. 2005). however, the voices of people with dementia are missing from these studies, as the experience of religion is reported from the perspective of carers and traditional and/or faith leaders. similarly, when spirituality is explored from the perspective of people with dementia, there is an overrepresentation of euro-christian perspectives (e.g. beuscher & grando 2009; dalby, sperlinger & boddington 2012; jolley et al. 2010; katsuno 2003; snyder 2003); african christian, islamic, and traditional religious perspectives are significantly lacking. the aim of this article is to advance the understanding of the role of faith and prayer in the lives of people with dementia in nigeria through a lens of everyday citizenship. we define everyday citizenship here as agentic activities that people with dementia partake in, in everyday and ordinary settings, as members of their families and communities. faith and prayer are rarely connected to the notion of everyday citizenship, even though they are both integral to social participation, especially communal prayers. thus, this article serves as a much-needed counterbalance to westernised notions of life with dementia and the spiritual aspect of people’s lives. linking lived religion to everyday citizenship in the scholarly world, religious beliefs and practices are commonly regarded as existing in a domain completely removed from practical and everyday life (rubin, smilde & junge 2014). nevertheless, religious beliefs and practices can – and do – have a place in every area of people’s social lives, even when they are generally based on the existence of supernatural or otherworldly powers (riesebrodt 2010). consider, for example, how islamic beliefs influence daily routines in many towns in northern nigeria, such as when to wake up, living arrangements, architectural designs of homes, family formation, marriage, social relations with family and non-family members, child rearing, in-school and after-school activities, market opening hours, money lending practices, burials, inheritance, and other aspects of home and public life. in this study, ideas and concepts related to lived religion and everyday citizenship are uniquely intertwined to provide a theoretical compass for understanding people’s experiences of living with dementia in nigeria. lived religion refers to the ways in which people utilise and are influenced by religion in their day-to-day lives (ammerman 2007; mcguire 2008; reimer-kirkham 2009). religion, as daily lived and practised in private and public domains, often reflects in communities and the society at large, visible in the forms of moral and/or ethical codes and ways of relating with others who are expected to be members of the religious community. for instance, in a study including participants with diverse religious and spiritual representations – such as christianity, sikhism, islam, hinduism, judaism, and atheism – religion was shown to provide a comprehensive code of conduct for life in general, including how to relate with people and what kinds of food to eat and clothes to wear (reimer-kirkham 2009). in this sense, ordinary and everyday religious practices become an important site from which to explore and emphasise opportunities for everyday citizenship in the lives of people with dementia. everyday citizenship refers to agentic displays and forms of communal support that happen in ordinary (as opposed to political) settings (nedlund, bartlett & clarke 2019). in nigeria, such displays might range from a person with dementia participating in town hall meetings to address specific communal challenges to choosing whether to continue living in their own homes or relocate to their children’s homes. ordinary spaces are not usually considered a space for citizenship, but citizenship scholars have begun to draw attention to how interpersonal relations and other structures of rule and belonging can be played out from marginal spaces rather than state agents (e.g. de koning, jaffe & koster 2015; neveu 2018; turner 2016). for example, in one australian study involving 80 muslims, researchers found that participants enacted everyday citizenship through actively participating in ordinary multicultural spaces (roose & harris 2015). in capturing and recognising these routine aspects of social relations and practices, we give importance to them and seriously consider them not only as a category of analysis but also as proof that everyday life experiences and relations are more than just ordinary and unremarkable (neal & murji 2015). thus, by examining the role of ordinary, taken-for-granted religious aspects such as faith and prayer in people’s lives, extraordinary communal dynamics of everyday citizenship may become clearer to see. research methods and design research design this study aimed to explore the role of religious faith and prayer in maintaining the everyday citizenship of people with dementia in a nigerian community. it was, therefore, important to adopt a qualitative research design to facilitate an in-depth exploration of the participants’ life world or lived experiences (creswell & poth 2016). qualitative research is particularly well-suited for providing detailed and comprehensive descriptions of human experiences, necessitating researchers to acknowledge their roles as co-constructors of knowledge, which may be influenced by their identities and positionality (denzin & lincoln 2011; sadiki, watermeyer & abrahams 2021). semi-structured interviews were conducted to elicit information from participants. according to silverman (2013), utilising interviews as part of the qualitative research design is valuable for an in-depth understanding of the phenomenon being investigated within its specific contextual circumstances. study population and data collection inclusion criteria included adult persons living in agbado (not real name), a community in southwestern nigeria, with dementia. using purposive sampling, the community was chosen, and participants were recruited. access to the community and persons with dementia was facilitated by a study of ageing team from the department of psychiatry at the university college hospital in ibadan, which had ongoing longitudinal research projects in different communities in ibadan (see, for example, gureje et al. 2011). the team at the university college hospital, which had an ongoing dementia assessment project in the community, at the time of data collection, had data on the number of people with dementia in the community, the kinds of dementia they had, and the severity of their dementia diagnosis. as this study was not concerned with details of the medical diagnosis but with the everyday experiences of living with dementia, details of participants’ dementia diagnoses were not collected. the first author, hereafter referred to as the researcher, only asked for access to their patients who had been assessed as having mild to moderate level dementia whom the researcher could communicate with. while the researcher did not conduct the assessment of participants’ dementia themselves, they trusted that participants had dementia as this assessment had been performed by a team of medical professionals who were trained to do that, and participants’ family members knew that they lived with dementia. using a household contact information list provided by the team at the university college hospital, the researcher and a local interpreter with almost 30 years of experience working with the team as a community research assistant visited households with a person with dementia. the contact information list was provided in bits – containing five to seven households at a time, so recruitment and data collection were conducted continuously until saturation was accomplished, that is until no new themes or ideas were arising from the interviews (saunders et al. 2018). in total, 17 people with dementia were recruited to participate in the study. before commencing the study, both people with dementia and member or members of their households were presented with full information about the study in yoruba, nigerian pidgin, or english – depending on which language the person preferred to communicate in. table 1 shows the demographic characteristics of the 17 participants with dementia. the table does not show details of participants’ dementia diagnoses, as this information was not collected. the ages of many participants are only an estimate as neither they nor their families could tell their exact ages. table 1: demographic characteristics of participants. the interviews were conducted between february 2022 and may 2022 in a small community in southwestern nigeria. interviews were primarily conducted in yoruba by the researcher with the aid of an interpreter, in participants’ homes. interviews lasted approximately 60 min. some participants were interviewed twice to collect additional information or clarify previously provided information. the interviews were recorded and field notes were written to capture extra information. data analysis the audio recordings were transcribed by a yoruba-speaking nigerian who was instructed to transcribe everything said during each interview in english. transcribing what participants said and what the interpreter translated helped to ensure that participants were credited with only what they said in the interviews. the transcribed data were subjected to a thematic analysis, which entailed identifying, interpreting, and presenting patterns of meaning within the data (braun & clarke 2006; eds. ritchie et al. 2014). using an abductive approach – going back and forth between data and theory (earl rinehart 2021) – the coding process involved reading the transcripts in conversation with the literature on dementia and citizenship. the transcripts were coded and categorised manually, on paper and using microsoft word. to protect the anonymity of participants, pseudonyms are used. to show the gender of each participant, the honorary title of ‘mama’ or ‘baba’ was attached to their pseudonym, which stays true to yoruba culture, where it is considered rude to address an older person by their name alone. in reporting the quotes, labels are also assigned (willis et al. 2016) based on participants’ gender and religion. for example, the label ‘mama feyi, m’ refers to a female muslim participant named feyi. ethical considerations the study was assessed by the norwegian centre for research data (sikt) (ref number: 227353) following an evaluation by the regional committees for medical and health research (rek) (ref number: 293298). ethical approval was also granted by the university of ibadan/university college hospital ethics committee (number: ui/uc/21/0674) in accordance with the national code for health research ethics in nigeria. full and informed consent was a requirement for participation based on the ethical standards listed by the ethics boards. thus, participants were provided with clear and complete information about the study before obtaining their consent. information about the study was provided in english, pidgin, and yoruba, depending on which language participants were more comfortable with. ‘dementia’ could not rightly translate into yoruba or pidgin; phrases such as ‘memory problems or loss mostly associated with ageing’ were used instead. to ensure that the person with dementia understood what they were consenting to, they were asked questions about what the project was about and what was required of them. participants with dementia demonstrated an understanding that the researcher had come to speak to them about living with dementia (or as translated to yoruba: memory problems mostly associated with ageing), and they showed that they understood what it meant to consent to participation. however, because this work was being performed within a culture where decisions are usually approached collectively, it seemed respectful to approach consent and recruitment collectively. thus, in each household, both the person with dementia and a member of their household – usually a family member or close neighbour – provided verbal consent and signed or gave their thumbprints on the written consent forms. results the main theme identified in this study was: prayer as a space for active and agentic participation. this theme will be elaborated on and illustrated with quotations from the interview data in the following sections, under four sub-themes: (1) agency in routine and daily prayer, (2) cognitive (re)framing through prayer, (3) prayer as a vehicle for active social interaction and support, and (4) prayer as work and transaction. prayer as a space for active and agentic participation our analysis showed prayer to be a space for active and agentic participation for participants with dementia. further in the text, we highlight what this entails under four sub-themes, which discuss active and agentic activities participants engaged in through prayer. agency in routine and daily prayers prayer formed a part of everyday life for participants in this study. the literature has shown that maintaining an everyday routine is important to living well with dementia (andersen et al. 2004; han et al. 2016). for participants in this study, prayer has been a major part of their everyday life – and remains a central aspect of their everyday life even with dementia. all participants in the study self-identified as religious, with 15 being muslims – one of whom practised islam together with a traditional yoruba religion – and two being christians, and they all spoke of prayer being a key routine activity they engaged in. participants highlighted praying habitually five times a day. according to one muslim participant: ‘i have faith in my act of worship. i pray five times a day. i don’t miss any of the prayers. i believe in god, and i believe that he will do whatever he wishes to do.’ (baba ade, m) participants’ agency was visible in how they negotiated details around prayer, such as when to pray, the choice to join communal prayers, and even the physical posture to assume when praying. for example, participants who lived with other physical disabilities that restricted their abilities to go to the mosque or church, perform the physical motions associated with islamic prayers, or pray at the scheduled times, could decide for themselves how, when, and where to pray: ‘i usually do [pray]. once they call for prayer, here that i am sitting, i will join in the prayer …’ (mama doyin, m). according to another participant: ‘… i usually go to the mosque before to pray… since this sickness [limited mobility] started, i have not been able to join them at the mosque to pray. so, i pray at home here. when i hear the call to prayer early in the morning, i will get up, do ablution, and pray here.’ (baba gbadebo, m, atr) even participants whose religious traditions mandated the schedule for the daily prayer routine negotiated how and where they wanted to carry out the routine. participants displayed both creativity and agency in these daily negotiations. for example, a muslim participant who was blind, partially deaf, and had limited mobility stated: ‘i usually do the complete prayer [i.e. pray five times a day]. but i don’t do it at the originally scheduled time. if i pray in the morning and pray in the afternoon, i may not pray the other ones immediately with them. i will pray it all in the night when i am doing the final prayer.’ (mama niyi, m) participants with dementia also utilised prayer as an agentic tool – to express themselves and their wishes. while they majorly used prayer in this way when praying to god about themselves and their loved ones, they also used it as a way of asserting their agency during the interviews and conversations. they ‘interrupted’ with prayer as a way of asserting themselves, to clear up the air or say something they needed to say. for example, during an interview with a participant (baba seriki, m), his wife explained that he had been abandoned by his children because of his bad behaviour in the past. to defend himself against this perceived attack from his wife, baba seriki (m) cuts in with a prayer directed at the researcher: ‘your secrets will not be uncovered. your prayers will be answered. god will not put you in this condition. you will grow old …’ in another interview with a different participant, she had probably gotten tired of the discussion and wanted to let the first author know it was time to leave, so she started praying, ‘you will go and return safely … you will reap the fruit of your labour … thank you for coming to see me …’ (mama bosede, m). sometimes, participants started to pray right in the middle of the interviews. sometimes, it happened when they could not articulate an answer to a question being asked or simply did not want to answer. other times, they added a prayer when there was silence – perhaps to fill the silence – or when we asked if they had anything else to say. for example, in response to a question about herself, a participant started praying for the research team: ‘everything about you will be sweet! you will enjoy good things!’ (mama kike, m). cognitive (re)framing through prayer prayer was a routine that formed part of participants’ everyday lives, but its meaning and utilisation in participants’ lives were more than ordinary. for example, prayer allowed participants to build on their faith, strengthen their connections to god, and (re)frame their conditions. while being in the condition that most participants were in – poor, disabled, and living with dementia – may be a signal to an observer that participants were in unfortunate positions, they did not think of themselves this way. many of the participants expressed gratitude to god for their lives and revelled in their connection to him, his response to their prayers, and their complete trust in his will. take, for example, participants’ responses to common questions that were posed to them during each home visit or interview to inquire about their well-being and feelings of (un)happiness. most participants with dementia answered such questions by thanking god for keeping them alive. one female participant said, ‘i thank god. i thank god for my life. everything i am doing is okay. i appreciate god for my life. i am okay as i am now …’ (mama bosede, m). another added: ‘i am always happy, and my heart is gladdened. whenever i wake up, i am grateful to god that i woke up in peace; i thank him with my whole heart.’ (mama kike, m) many participants expressed contentment in their lives, which was rooted in their faith in god and their acceptance of his will. while it may be common in some faith traditions in nigeria, such as the researcher’s pentecostal christianity, to see conditions such as illness and disability as a signal of wrongdoing against god or unanswered prayers, participants saw god’s answers to their prayer in the fact that they were alive and nothing ‘terribly bad has happened to’ them (baba ade, m). another participant, when speaking of how she felt about her life, simply exclaimed, ‘ahhh! god answers my prayers’ (mama jaiye, m). dementia and other comorbidities were not seen as terrible situations that signalled a strain in their relationship with god or showed that their lives were bereft of answered prayers. this cognitive (re)framing shows how they viewed their relationships with god, what they interpreted as answered prayers, and how they coped with living with dementia. for example, one participant expressed, ‘god has given me life and peace … i am not bothered’ (mama niyi, m). another added, ‘if i do not die … if i do not die, i believe the future will be better …’ (mama ibukun, c). life and peace were, thus, framed as proof of god’s goodness in their lives and answers to their prayers. as long as they were alive, they knew that they were living a good life and that the future would be better. however, to some, even death was not a sign of being abandoned by god. these participants conceived of death as being called home to god. for example, when speaking of the death of his children, one of the participants stated: ‘god has called all my immediate children to his side … i don’t worry about the children that i lost, especially because they all had children, and i am happy each time i see them [the grandchildren].’ (baba ade, m) they saw the dead person as reunited with god and the bereaved as standing with god on the other side of death. for example, when a participant was asked about her friends in the community, in trying to explain that all her friends were now dead, she expressed, ‘i am standing alone with god’ (mama kike, m). another participant, speaking of being alone since her husband died, stated, ‘i don’t have another husband. i stand with god …’ (mama tani, m). this way of framing death and loss brought them to a place of acceptance and gratitude for what and who they still had with them. although many participants used prayer to negotiate with god for sustained well-being and improved conditions, ultimately, they accepted that god had the final say. and thus, framed difficult situations in their lives as part of god’s will. one participant, while speaking of her inability to walk and the possibility of walking again, stated: ‘it is god that made it that way. even if i don’t like the situation, there is nothing i can do since god let it be like this … i cannot fully know the handwork of god. it may be possible.’ (mama yejide, m) another participant, while speaking of being abandoned by her children, stated, ‘that’s how their god created them to be … ahhh! their god created them that way’ (mama enitan, m). participants acknowledged that they could do their parts of believing in god and making their supplications known to god, but it was all up to him to decide what to do, and they would be content with the decision. one participant expressed that although he believed in god and prayed five times a day without fail, he believed that god would do ‘whatever he wishes to do’ (baba ade, m). he went on to express: ‘it is only god that can say that [decide the future]. whatever he brings, i will accept it. i cannot dictate for god … whatever god brings is what i will accept and appreciate.’ (baba ade, m) prayer as a vehicle for active social interaction and support social interaction, which has been highlighted in the literature as a protective factor for living with dementia (han et al. 2016), was also found to be connected to prayer in this study. prayer was more than just an individual and introspective activity for the participants; it was also an opportunity for social engagement and interaction. for participants, not only was praying daily an important routine but it was also essential for them to do this communally – going to the mosque or church and praying with others. in this sense, the practice of praying constituted everyday citizenship, as it confirmed a person’s identity as an active member of a religious community (see hopkins & blackwood 2011). because of the impairment effects of dementia, muslim participants did not always know when it was time to pray. however, this was not a problem for many because they could utilise resources around them to navigate this challenge of memory loss. for example, the adhan (the muslim call to prayer) from the mosques around participants became an essential tool to navigate the challenges of memory problems and continue to participate in daily communal prayer: ‘when it is time for the prayer, they will shout and call everyone to prayer … their shouting makes me know that it is time to pray’ (mama kike, m). the call, thus, serves as a tool provided by the larger community, arguably unintentionally, to support people with dementia and encourage their continuous participation in communal practices. prayer and religious spaces connected participants to relationships and support outside their families. for example, those who went regularly to the mosque or church to pray found friendships there and enjoyed communal support from their faith community. this support or show of care sometimes came as visits to check in on them whenever they were absent from the mosque. according to one participant, ‘i always go to the mosque, but any day i don’t go, the leaders of the mosque will come to check and ask me what happened’ (mama kike, m). another participant expressed getting visits from friends from the mosque whenever she was absent, ‘ahhhhhhhh! many, many of them! (laughs). they usually come from various places to see me … “ahh mama, you didn’t come to the mosque?”’ (mama jaiye, m). prayer, thus, served as a vehicle through which participants found social support, a sense of belonging, and a sense of community, all of which are significant protective factors for dementia. participants who could no longer go to the mosque or church to pray because of illnesses and disabilities were not left out of this show of care. one participant who was paraplegic spoke about receiving visits and monetary gifts from the imams at the mosque: ‘they usually bring something. they will pray for me, asking god to make me stand up. one comes every seven days to pray for me and gives me money. every day of jimoh [friday].’ (mama doyin, m) within these religious spaces, participants were not merely passive recipients of care and support, but active participants and providers of support themselves. participants who went to the mosque and church to pray also had the opportunity to play active roles in these spaces. some participants expressed that they participated in visiting and supporting other members of their faith community. according to a female participant: ‘there was one of my friends that stopped coming to the mosque; i went to see her at her house. i was asking her why she stopped coming to the mosque.’ (mama kike, m) another participant explained how he played a key role in mobilising support for others in the mosque: ‘if there is any need to visit someone, i will gather people, and we will visit the person and pray for the person. if we want to go and visit the people that did not come to the mosque or that are sick, i will call all of them and lead them to the place …’ (baba ade, m) the religious spaces also provided an opportunity for some participants to be part of key decision-making events and festivities outside of their families and homes: ‘it has been a while since we did such [speaking of communal activities such as town hall meetings] apart from the one in the mosque; we did one at the mosque three days ago and even two days ago. if there is anything to be done, we come together to discuss it and plan for how it will be done. sometimes, they have a party there …’ (baba ade, m) prayer as work and transaction participants also used prayer to participate fully in their community and contribute to the lives of those around them. as stated earlier, many of the participants, in addition to dementia, had other disabilities and illnesses. this limited their abilities to work and participate in familial and communal lives in ways that they used to; thus, prayer now constituted much of their everyday activities and ‘responsibilities’. some participants spoke about prayer as work – what they did now that they could no longer do their regular jobs. for example, one of the participants, who could no longer design local caps as he used to do in the past, expressed that leading prayers in the mosque and praying for people were his current work: ‘i am not doing anything apart from leading prayers for the people … that is the work i’m doing now’ (baba ade, m). another participant who was paralysed expressed, ‘it is only prayer i have … it is only prayer that i have to offer. a prayerful mother is good! that is what i do’ (mama doyin, m) prayer was seen as a legitimate work by some participants, while others saw it as something they now had to do as they did not have much else going on. for example, one participant stated, ‘there is no other thing i am doing; there is nothing keeping me from praying’ (mama odunayo, m). for those who could not move around the community and could only sit or lie in their homes, prayer was used to stay ‘active’. one participant, when speaking of what she does to keep herself busy, stated, ‘ahhh! it is prayer that i will be praying. it is prayer …’ (mama feyi, m). participants also used prayer in transactional ways – to repay kindness or give back to others. during the home visits, it was common for participants to pray for the researcher– and interpreter – before and after interviews. before the researcher proceeded with the questions, participants loudly offered well wishes in the form of prayer. for example, while gearing up to start interviewing a participant, she started praying for the research team, ‘nothing will happen to you …’ (mama jaiye, m). on another occasion, after chatting with a participant and giving her money in appreciation of her time, she started praying for the researcher and interpreter, ‘toor! you will not suffer! you will go, and you will return; you will not meet any trouble’ (mama doyin, m). another participant, after the interview, prayed thus: ‘god will bless you; your prayers will be answered … ahhh. you will not be ashamed. god bless you. [stops to ask if the researcher was married with kids, and after the researcher said no, continued] god will give you a man of your choice … you will be blessed with children …’ (mama ronke, c) this show of goodwill extended beyond the research relationship to encompass other people and relationships that mattered to them. participants frequently prayed to god about the well-being of their family members and loved ones. according to one participant, ‘i pray for myself, my children, the senior wife, the senior wife’s children, and her husband’s family’ (mama enitan, m). another participant, when probed about the content of her frequent prayers after she expressed how often she prayed, explained: ‘i thank god for making me be alive. i pray for my children and grandchildren; that they should prosper in all that they do … my children should go out in peace and return in good health.’ (mama kike, m) sometimes, the prayers extended beyond the living to even include people who were no longer alive: ‘i pray for so many people ooo. if i go to the mosque or am praying inside, i pray for my son, wife, children, grandchildren, and all the senior imams that taught me the quran who are still alive and even those who are dead. i pray for them. that the people that have died that god should have mercy on them.’ (baba ade, m) through the work of prayer, participants retained the roles of active agents and/or participants in their communities and found a useful tool with which to provide care and support to those around them. sometimes, this brought them tangible rewards from those they prayed for. for example, some participants expressed that they sometimes received monetary or material gifts in exchange for praying for people in the community. according to one participant: ‘many times, they pay me a little token for the prayer in appreciation … i use prayers to support outsiders [non-family] who come to me with challenges they need prayers to handle … and after doing the prayer for them, they give me a token.’ (baba ade, m) prayer had thus become, for some, an unintended relational transaction. a comment by another participant further illustrates this: ‘i usually pray for everyone, and they usually give me things. do you understand? everyone gives me something without begging them. some of them would have gone a distance away, but they would still come back just to give me something. i don’t beg them ooooh!’ (mama doyin, m) discussion this article examines for the first time the role of religious faith and prayer in the everyday lives of people with dementia in nigeria. drawing on the accounts of a marginalised population whose lived experiences are underrepresented in both dementia and/or disability research and citizenship scholarship, the study has shown how religious practices, particularly faith and prayer, can become avenues for enacting and maintaining the everyday citizenship of people with dementia in nigeria. specifically, the major theme identified in participants’ accounts was that prayer served as a space for active and agentic participation. this theme was further elaborated upon through four subthemes: (1) agency in routine and daily prayer, (2) cognitive (re)framing through prayer, (3) prayer as a vehicle for active social interaction and support, and (4) prayer as work and transaction. participants described religious practices, such as faith in god, individual prayer, and communal prayer, as important to their acceptance of their situations, their feelings of hope in their everyday lives, and their connection and contributions to their community. studies conducted elsewhere show that religion and spirituality are tools that bring acceptance, hope, and connection to people with dementia (beuscher & grando 2009; katsuno 2003). beuscher and grando’s (2009) study, which primarily focused on christians, reported that although most participants’ faith or beliefs were not affected by their cognitive impairment, it affected their participation in religious activities such as praying and being involved in the church. this was, however, not the case in this study. participants, a majority of whom identified as muslims, reported continued involvement in religious activities – they prayed daily and went to religious spaces almost regularly. for muslim participants, this was facilitated by the proximity of mosques to people’s homes, the call to prayer (adhan), which reminded them when it was time to pray, and the support they got from friends and leaders who regularly followed up on them. faith and prayer have been shown to play a positive role in the experiences of people with dementia in this nigerian community. for participants, religious practices, such as prayer, had become more than a spiritual meaning-making tool for people with dementia and were transformed into a space for active ageing, asserting agency, participating in everyday and communal life, dealing with loss and other challenges, and supporting and being supported by others. this invariably has implications for dementia theorisation, care, and research. taking a departure from the findings from this study, policymakers, scholars, and activists in nigeria and africa can re-imagine a future for dementia care where not only both indigenous african and non-african but contextualised religious practices can be also incorporated into care and structures of everyday living. for example, the way that participants with dementia in this study asserted their wishes and needs through praying about them can provide insight for dementia care workers on the different ways by which people with dementia may communicate their needs. research studies that encourage participants with dementia to express themselves through praying out loud to god rather than talking directly to an interviewer may uncover different needs and wishes of people with dementia. our analysis shows the centrality of relationality in the everyday experiences of people with dementia, highlighting the embodied, agentic, and participatory nature of relationality in and through religious spaces and practices. through relationships formed and maintained by prayer, going to the mosque or church, and giving and receiving supportive visits, people with dementia actively participate as full members of their communities. relationality, within the context of dementia research, has been widely explored from scholars such as adams and gardiner (2005) and ryan et al. (2008), who developed the paradigm of relationship-centred care, to scholars such as bartlett and connor (2010), kontos et al. (2016), kontos, miller and kontos (2017), who have expanded the work on citizenship in dementia studies. however, while the centrality of relationships in the dementia experience has been explored and established by many dementia scholars, these works have been mainly limited to human interconnectedness. the literature has not emphasised connections to and through religious practices, spaces, and deities. a major contribution of this study lies in this limitation in the literature. the findings show how relationships with a supernatural being, maintained through routine prayer, can not only impact how people with dementia frame themselves and their situations but also impact the relationships that they have with others in their community. policymakers, researchers, and dementia care workers can use prayer and religious spaces as tools for exploring the experiences and relationships of people with dementia. scholarly understandings of dementia and approaches to dementia care in nigeria are significantly contextualised within a biomedical and secular framework. those working within a biomedical framing tend to understand dementia in terms of an illness or health condition that needs to be monitored, diagnosed, understood, and managed pharmaceutically and/or therapeutically (see, e.g., amoo et al. 2011; ochayi & thacher 2006; perkins et al. 2002). there is, however, a wealth of resources to unravel and utilise in dementia care when we consider experiences of dementia contained within the everyday communal and religious space. for example, rituals of daily personal and communal prayers and visitations, as seen in this study, provide persons with dementia supportive structures and activities to look forward to and participate in as full community members. religious activities even become avenues for work and inclusion in communal and everyday life for those unable to work anymore. this has an implication for scholars and professionals who aim to improve the well-being of people with dementia. the temporal practices attached to islam, for example, such as the calls to prayer (adhan), which was shown to help participants in this study tell time and join in communal prayers, can also be a resource to note when designing or advocating for dementia care in nigeria and other contexts where muslim people with dementia live. the spiritualisation of dementia in africa is often regarded negatively, such as instances where people with dementia are considered witches (adebiyi et al. 2016; brooke & ojo 2020; khonje et al. 2015; mkhonto & hanssen 2018; mushi et al. 2014; ndamba-bandzouzi et al. 2014). however, as the results of this study have shown, religious beliefs and practices do not always necessarily affect the lives of people with dementia negatively. as other researchers have shown, faith healers may not perceive and understand dementia as an illness, but they have their place in caring for people with dementia (hindley et al. 2017). participants in our study did not conceptualise dementia as an illness or impairment in the same way they did other multimorbidities they lived with; however, we do not interpret this as an error that needs to be corrected through education or awareness. an alternative – or rather, community-based – approach to understanding dementia can be a rich resource to explore to advance theoretical understandings of dementia and practice-based approaches to dementia care. conclusion this article contributes to advancing the understanding of the socially orientated everyday experience of dementia in nigeria and africa, drawing on narratives of everyday religious practices from people with dementia themselves. it contributes to a small body of literature on the social, everyday experiences of living with dementia in africa and stands as the first of such a study in nigeria. however, it does not represent the experiences of different groups of people with dementia in nigeria. further research is needed to highlight the experiences of people with dementia from other tribes/ethnic groups, religions, geographical locations, and socio-economic backgrounds in nigeria. acknowledgements the authors would like to thank the department of psychiatry, university of ibadan/university college hospital for logistics support during the fieldwork stay. professor baiyewu and dr olugbadebo are acknowledged for facilitating access to the community and persons with dementia. professor anne raustol is acknowledged for providing critical responses while this article was at its early stage. professor inger marie lid and dr ana koncul are acknowledged for working as part of the supervisory team for this doctoral work. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions e.o.g. and r.l.b both contributed to the conceptualisation, methodology, visualisation, writing, review and editing of this work. e.o.g. was primarily responsible for collecting, analysing, and managing the data for this work. r.l.b. validated the data, supervised the entire work, and contributed to writing and editing the drafts. funding information this work was funded by vid specialized university, norway, as part of the citizens project (citpro): everyday citizenship for persons in vulnerable situations. data availability the data that support the findings of this study are not openly available and are available from the corresponding author, e.o.g., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references adams, t. & gardiner, p., 2005, ‘communication and interaction within dementia care triads: developing a theory for relationship-centred care’, dementia 4(2), 185–205. https://doi.org/10.1177/1471301205051092 adebiyi, a.o., 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fleur h. boot, callista kahonde, john dinsmore, malcolm maclachlan received: 10 june 2020; accepted: 26 nov. 2020; published: 23 feb. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: whilst assistive technology (at) can play an important role to improve quality of life, health inequity regarding access to appropriate at for people with intellectual disabilities (id) is still very much present especially in low resource countries. objectives: this study focused on exploring factors that influence access to and continued use of at by people with id in the western cape province of south africa and to suggest potential implications of these findings and actions required to promote access to at. method: a qualitative approach was used to explore the experiences of people with id and providers of at. face-to-face interviews with 20 adults with mild to profound id, and 17 providers of at were conducted and the data were analysed thematically. results: people with id within the study setting faced many challenges when trying to access at and for those who managed to acquire at, its continued usage was influenced by both personal characteristics of the user and environmental factors. important factors that influence at access and use for people with id found in this study were (1) attitudes from the community, (2) knowledge and awareness to identify at need and (3) at training and instructions to support the user and care network. conclusion: with the perspectives of both the providers and users of at, this study identified priority factors, which could be addressed to improve at access and use for people with id in the western cape province. keywords: intellectual disability; assistive technology; access; health inequity; south africa. introduction access to assistive technology (at) has become an important topic on the global agenda towards implementation of the united nations convention on the rights of persons with disabilities (uncrpd), the sustainable development goals (sdgs), and universal health coverage (tebbutt et al. 2016; un 2006, 2015; world health organisation [who] 2016a). assistive technology can play an important role to maintain or improve an individual’s functioning and health to enable people to live at home independently and to improve participation in society. assistive technology ranges from low-tech products, such as glasses or pill organisers to high-tech products, such as motorised wheelchairs or communication software. assistive technology can benefit a wide range of people, including people with disabilities, the ageing population and people with non-communicable diseases. the who stated that worldwide, only one out of 10 people has access to the at they need, whilst it is expected that in 2030 more than 2 billion people will need at least one at (who 2016a). in 2014, following the uncrpd, the who launched the global cooperation on assistive technology (gate) programme to improve access to affordable and quality at for everyone, all over the world (who 2014). global cooperation on assistive technology aims to address the different challenges in the field of at policies and programmes, at industry, at service delivery and at personnel, with a clear focus on the at end-user whilst engaging with these challenges (who 2014, 2016a). people with intellectual disabilities (id) may benefit from access to at. however, the use of at for people with id is still a neglected area in research and practice (boot et al. 2017). the gap is even wider in lowand middle-income countries, where little is known regarding access and use of at for people with id even though the incidence of id is significantly higher in low resource countries compared with high-income countries (durkin 2002). people with id have limitations in cognitive functioning and difficulties in coping with everyday tasks related to conceptual, social and practical skills (aaidd 2013; the american psychiatric association 2013; who 2016b). assistive technology may be useful in addressing these difficulties in cognitive and adaptive functioning and increasing independence and inclusion. in addition, people with id have a high prevalence of comorbidities, which could be better managed with at, such as sensory impairments, speech and language impairments or mobility disorders (hatton & emerson 2015; jansen & kingma-thijsen 2011). however, the health needs of people with id are often missed and there is a high rate of underdiagnoses of these comorbidities. for example, in a study by meuwese-jongejeugd et al. (2006), hearing impairment was found in 30% of the adults with id, in half of the cases this hearing loss had not been diagnosed prior to the study (meuwese-jongejeugd et al. 2006). people with id often present health problems differently and may have difficulties in communicating their symptoms. they often depend on their care network to identify their health needs. in addition, people with id are still a marginalised, devalued and stigmatised group and some of their health disparities are because of health inequities regarding access to secure health services and appropriate at (hatton & emerson 2015). south africa is an upper middle-income country, according to the world bank categorisation (the world bank 2020). although the exact prevalence of people with id in south africa remains unclear, it is expected to be around 3%, compared with 1% in high-income countries (adnams 2010; mckenzie, mcconkey & adnams 2014). specific epidemiological data on id in south africa is lacking and different methods and definitions are used to determine id (adnams 2010; kleintjes et al. 2006; mckenzie, mcconkey & adnams 2013). it is likely that formal id assessments do not often take place. mckenzie et al. (2013) found that people with id in south africa have limited access to healthcare and rehabilitation services. people with id face profound difficulties when trying to secure south african human rights principles (capri et al. 2018). social services struggle to receive funding, resulting in organisations taking a more protective role instead of a social or human rights model approach to disability (mckenzie et al. 2014). services and professionals also struggle to find context-relevant id knowledge, because most id research takes place in high-income countries. as research from high-income countries does not always fit the south african context and environment, there is a significant gap in indigenous research for people with id, including research on id and at (mckenzie et al. 2013). existing research on at for persons with disabilities in south africa and other parts of africa has shown that at for people with mobility impairments is given priority (visagie et al. 2017). no existing studies were found specifically focusing on access to at for persons with id. therefore, this study addressed the following research questions: which factors influence access to and continued use of at for people with id in the western cape province of south africa? and how can the provision of at for people with id in south africa be improved? research methods and design study design this study adopted a qualitative research design using semi-structured face-to-face interviews within a phenomenological approach. relatively few people with id are able to read and write and to fill in written questionnaires. therefore, the most appropriate method to gain personal views from people with id is interviewing. study participants the participants were divided into two main groups: (1) adults with id and (2) providers of at. purposive sampling was used to recruit participants. participants were approached through the network of the centre for disability and rehabilitation studies at stellenbosch university in cape town, which consisted of psychiatric hospitals, care providers, disability persons’ organisations (dpos), national umbrella bodies, parents’ advocacy groups, the department of social development and local at suppliers. for group 1 adults with id, the management and gate-keepers of these different organisations were informed about the study and asked to identify 15 adults with id willing to participate in an interview, either users or non-users of at. preference was given to select a range of individuals with different ages and levels of id. the information leaflet and consent form were adjusted to the cognitive level of the participants (i.e. easy to read, larger font size, fewer words per row and the use of symbols) and were translated into two local languages in the western cape province, afrikaans and xhosa. if the participant was not able to give informed consent, his or her primary guardian gave informed consent. after informed consent, information on age, gender, care setting, level of id, cause of id (aetiology), medical history and indication or reason for having the at was gathered. this information was provided by the parents or care staff. the participants were categorised into either mild-moderate or severe-profound id by the researcher (first author) at the time of the interview, according to international classification of diseases (icd)-10 classification (who 2016b). this categorisation was based on information available from the service providers and on the researcher’s experience as a specialist id physician whilst communicating with participants and evaluating their understanding of the questions. depending on the communication abilities of the participant, the interviews were conducted with the persons with id themselves and/or their parents and care staff. participants of group 2 providers of at consisted of prescribers of at (health professionals working with people with id), local suppliers or retailers of at, managers of disabled person’s organisations and government officials. fifteen participants per group were expected to be sufficient to achieve saturation of the data from interviews (van schijndel-speet et al. 2014). achieving data saturation provides a comprehensive account for the specific groups interviewed in that resource setting. if the number of interviews did not achieve saturation of data, additional participants would be included. data collection the interviews took place in january and february 2018. the semi-structured interview guide focused on current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies of at. all the interviews were conducted by the first author with the support of interpreters for participants who were non-english speaking. at the start of each interview, at was defined using a booklet containing at images to highlight the variety of at. assistive technology included any lowor high-tech product in the domains of vision, hearing, mobility, communication, cognition, environment and personal care. the questions were adjusted to the level of id and the parents or care staff aided participants in understanding questions, which they found challenging. a copy of each interview guide is provided as online appendix 1 and 2. interviews were conducted at a time and location convenient to the participant. the researcher explained the purpose of the interview and asked permission to use the audio recorder. data analysis the recorded interview data were first transcribed verbatim. the interviews conducted in local languages were transcribed and translated to english by translators who were proficient in the two languages. the technique of constant comparison analysis, as described by elliott and timulak (2005), was used to analyse the data. firstly, participants’ responses were divided into meaning units. meaning units are segments of the data that even if interpreted out of context would provide adequate information to the reader. next, the meaning units were coded into categories that emerged from the meanings in the meaning units. the categories were subsequently organised into broad headings, or domains, to provide a conceptual framework for themes. ethical consideration this study is part of a larger cross-sectional study global access to assistive technology for people with intellectual disabilities (gate-id), for which ethical approval was obtained from the health policy & management/centre for global health research ethics committee, trinity college dublin, ireland (04/2017/01) and the social research ethics subcommittee, maynooth university, ireland (sresc-2017-053). ethical approval for this part of the study was granted by the health research ethics committee (hrec) of stellenbosch university (hrec reference no.: n17/08/072) and the western cape department of health in cape town. the study adhered to the declaration of helsinki for research involving human subjects. results participant characteristics in total, 37 participants were interviewed. table 1 presents the participants’ characteristics of group 1 adults with id (n = 20) and group 2 providers of at (n = 17). the participants of group 1 were not professionally assessed for their intellectual functioning prior to the interview, so the researcher used the criteria described in the methods section to determine the level of id. all adults with id were accompanied by their caregiver (parent or care staff) during the interview to support them where needed. one adult was non-verbal and had a severe-profound id in which case the caregiver answered all the questions for him. table 1: participants characteristics. assistive technology table 2 shows the current at that participants from group 1 adults with id were using. table 2: current assistive technology in use by participants of group 1 adults with intellectual disabilities. on average, participants used three at products per person, ranging from zero to nine. the ats most commonly used were in the domains of communication (cell phones) and environment or self-care (shower chairs). products with at to support hearing were mainly used by participants living with a care provider who serves individuals with hearing loss. the two participants with nine at in use were also residents of this specialised care provider. themes qualitative analysis of the data resulted in three main themes that are supported by findings from both groups: (1) stigma, (2) access to at and (3) continued use of at for people with id. the results are presented here with the themes and domains as headings and subheadings, respectively. the domains are neither ordered in terms of importance nor do they imply any hierarchy. each domain included meaning units from both group 1 adults with id and group 2 providers of at and the findings represent the perspectives of the participants of both groups. the findings are both facilitators and barriers related to the themes (r = researcher; p = participant). theme 1: stigma there were three domains generated for stigma: attitude towards id, empowerment and advocacy, and shame. attitude towards intellectual disabilities: the majority of the shared examples of negative attitudes were not towards the at but rather towards id, and emerged from fear, poverty and lack of education according to the participants. participants shared their concern about the lack of knowledge within government, who they believed were not putting enough effort in supporting people with id: ‘p: the issues around intellectual disabilities are almost always left off the table and forgotten’ (int_pro_sa_005 government representative). negative attitudes were also experienced from healthcare workers; people got refused at clinics and practitioners treated people with id unequally: ‘p: i think they are just completely overlooked. if we have a person with id and a child going to a community clinic and they both need a hearing aid, 10 to 1 the child gets in for assessment …. they are not going to refer the person to audiology and for hearing aids.’ (int_pro_sa_009, occupational therapist) participants gave examples of negative attitudes from people in the community towards the at they were using, for example: ‘r: does it [the wheelchair] help you to make friends? p: no, not really. because, people will look at you like, hhuuuhhh, who is this now. r: is it difficult to make friends? p: yes. because most of them think if you’re in a wheelchair you’re not good enough.’ (int_id_sa_003, adult with id) people with severe to profound id were especially stigmatised when it came to at; as if others had difficulties seeing beyond the cognitive limitations: ‘r: and his hearing, has that been tested? p: god. i don’t know, no. they don’t really go for, it’s only like mainly the high grades that already have glasses or stuff like that. r: you wouldn’t see people of his level to have those kind of products? p: no.’ (int_id_sa_020, caregiver) at community level, stigma was still very much seen as being culturally constructed: ‘p: there is still stigma in relation to id in general. and a lot of it is culturally defined. in some cultures it’s viewed as being a curse. they are not allowed to be seen in public, it doesn’t matter what type of assistive device they have.’ (int_pro_sa_001, government representative) carers mentioned that people with id were exploited for criminal activities such as drugs and that they were often neglected by family members: ‘p: he is neglected really. the sister is getting his money [disability grant] and don’t buy him nothing’ (int_id_sa_008, caregiver). in general, the experience reported was that people with id were not seen as full citizens by people in the community and by the government: ‘p: the attitude that the patients who have id and are wheelchair bound can’t really contribute that much to society anymore, is what they think. they choose not to fund that much because they are not getting anything back.’ (int_pro_sa_012, physiotherapist) empowerment and advocacy: participants mentioned that people with id often do not go and ask for at themselves and there was a lack of advocacy for people with id: ‘p: a ngo that one can rely on, that you can go to. there are some, but that is more for your disabled person with a high iq. it’s like you’re physically disabled with a high iq, or a blind person with a high iq, and deaf, for that there are many who take responsibility. but as soon as there is an iq deficiency, it feels like people fall back.’ (int_id_sa_006, caregiver) in some cases, people with id within a care facility were prohibited to have certain at such as cell phones or ipads. however, in other cases, people with ids were able to choose at, such as glasses, themselves. assistive technologies were enabling people with id to be more independent: ‘r: do you take your pills yourself, or does your mother help you with it? p: i take them myself. r: and if you wouldn’t have the pill organiser would you still be able to do it yourself? p: no, i wouldn’t.’ (int_id_sa_012, adult with id) during at assessment, it varied if people with id were involved in the assessment process, to comply with the user’s needs and wishes and to see if the at would fit the person correctly: ‘p: people often think that because of the compromised cognitive functioning they cannot consent or they can’t be involved in decision making processes. so they’re frequently not included. r: and is it the professional or the family that doesn’t include them? p: both.’ (int_pro_sa_013, psychologist) most of the health professionals did express that they included the person with id within the decision-making process, although they might have to use a different approach: ‘p: someone with an intellectual disability you have to make sure it’s tangible. you can’t be talking about abstract concepts, but if you just make sure your pictures are appropriate, the selection process is fine.’ (int_pro_sa_017, occupational therapist) shame: providers of at mentioned that parents sometimes expressed shame towards at and prohibited access to at for their child: ‘r: are people sometimes ashamed that they have to use the product? p: yes, we see that a lot. a lot of the parents, although the child needs the product, they don’t actually want to buy it, because it’s almost like a confirmation of my child has a disability.’ (int_pro_sa_015, supplier of at) participants with id themselves did not mention experiencing any shame regarding the use of at: ‘r: how do you feel wearing the glasses? p: it’s like second nature. basically it’s part of me. r: you’re not feeling ashamed for them? p: no, no’ (int_id_sa_015, adult with id). theme 2: access to assistive technology five domains were generated for access to at: identifying at need, assessment of at need, financial, policy and systems (e.g. policies, resources and the organisation of at services) and transport. identifying assistive technology need: ‘r: do you think that people with id could need some at but don’t have it? p: absolutely … hearing aids or spectacles, there is hundreds of people who need, but don’t have it. r: and do you know why? p: i think it’s either not thought of, someone with id maybe we should check his hearing and vision.’ (int_pro_sa_006, psychologist) the carers who were present at the interviews could not think of any at assessment the person with id could benefit from. this indicates a lack of knowledge and awareness amongst carers regarding the health needs of people with id and the range of at that is available. the person with id is often dependent on a carer or family member to identify the at need: ‘p: when i was a girl of 11 years old, then i have been taken for an eye test. our church did say that i needed to have glasses …. then he [brother] said to my late mommy, take me then to have my eyes tested.’ (int_id_sa_002, adult with id) persons with severe to profound id were seldom taken for at assessment. some professionals believed that people with id living at care facilities would have better access to at compared with people with id living with families. parents were not always aware that at could make their life easier also. both carers and professionals tended to focus on at for ‘visible’ disabilities, such as mobility devices, and less on at for communication or cognitive limitations. in addition, only a few speech and language therapists were available in public services. ‘p: because communication is not as visible. often they get physiotherapy first and mobility devices’ (int_pro_sa_016, speech & language therapist). to receive care and have access to at for cognitive limitations, id first needs to be identified. however, id assessment rarely took place and id often got confused with psychiatric diagnoses such as depression and psychoses: ‘r: is id often confused with psychiatric diagnoses like depression or psychoses? p: yes. and the other way around. people with id are often not diagnosed and treated for what they need.’ (int_pro_sa_006, psychologist) according to the health professionals from group 2, little training is provided on id for health professionals during their studies to know which specific health needs are present for people with id. professionals indicated the need to receive training on at for people with id: ‘r: who should be responsible for providing assistive products? p: i think we should all, as professionals, be able to do it, especially in south africa. because that person might be seen in a rural area, without access to an ot or physio or speechy, so i feel that the medical doctor should also be knowledgeable of all of these products.’ (int_pro_sa_008, occupational therapist) next to the professional, it would be powerful if people with id themselves could identify the need for at and to know which at could be beneficial to them. however, this wasn’t often the case: ‘p: no patient of mine has ever communicated that they need something. only a few of them will say i can’t walk any longer, it’s too tired to walk to your programme from the ward, can i please get a wheelchair. but it’s those obvious assistive aids that they need.’ (int_pro_sa_008, occupational therapist) pro-active healthcare assessments were not provided to people with id, mainly because of a lack of (human) resources and a lack of knowledge: ‘p: we recently had a resident who ended up in the hospital because there was an injury to his eye, and he had cataract of the eye. we wouldn’t have known if he hadn’t ended up for something else.’ (int_pro_sa_010, management care provider) assessment of assistive technology need: people need to be aware of available at providers to have access to at assessment. assistive technology retailers and providers indicated that social media was helping carers to find them, but they ordinarily would not know where to go. assistive technology providers cited advantages of community-based approaches to conduct at assessment: ‘p: we had a lot of people scheduled for an appointment but they never came because they can’t afford it …. that is where they changed it to access the local clinic first, let’s do the assessment and find out what your needs are.’ (int_pro_sa_001, government representative) the importance of id appropriate assessments was pointed out by several providers. however, some of the providers were not aware of assessments suitable to people with id, for example, assessment possibilities for people with severe to profound id in case of vision or hearing screening. challenging behaviour could also be a barrier for providers to do an assessment. providers were actively searching for training opportunities to develop their assessment skills for people with id. in places where there was a lack of a variety of disciplines, the professional needed to be educated in several fields, for example, the occupational therapist was also playing the role of a physiotherapist and a speech and language (s&l) therapist. limited resources impacted on at assessment: ‘p: we haven’t had a single person being send for a hearing test because quite frankly we don’t have the resources. we don’t have somebody we can send them to. it’s a big problem.’ (int_pro_sa_011, management care provider) placement of new graduates is one solution to the problem of a lack of professionals in rural areas or public healthcare organisations in south africa. a consequence of a lack of professionals is that people will buy at randomly without any professional involved. ‘r: when the family got him the other wheelchair, how did they know which one to buy? p: they just bought a wheelchair, randomly’ (int_id_sa_020, caregiver). the range of at through the public health system was, in most cases, limited compared with the private sector. as a result, people would receive at that wasn’t necessarily the at they required. another reason for people with id to have a limited choice of at would be because the professional did not have the time to train the person, whilst people with id often need more (frequent) at training compared with a person without id. almost all participants from group 1 indicated they would ask support staff or a family member to know where to go, to make an appointment and accompany them for an at assessment: ‘r: do you remember who gave you the glasses? p: my mom made an appointment for me to go and get the glasses’ (int_id_sa_011, adult with id). care facilities indicated it was not always easy to organise support to accompany the person to the at assessment. financial: funding was stated as a huge barrier for people to access at. participants agreed that the government should be (at least for those who cannot afford it) responsible to fund at for people with id. people with a disability grant were eligible to get at from the tender list for free and some at were indeed subsidised by government: ‘r: is it expensive to go to the eye doctor? p: no. it’s free. r: and the glasses would you have to pay for that? p: no, it’s free at the hospital.’ (int_id_sa_009, adult with id) however, there were limitations of public funding and the disability grant was not quite sufficient to afford at that was not subsidised by the government: ‘p: they [local ot of public health system] can say this person needs a transfer board, but transfer boards are not in our system to give …. incontinence products are only available for people over 60 years through the public health system.’ (int_pro_sa_002, management dpo) also, the at provided through the tender were more expensive: ‘p: what we find is that a lot of the products on the tender, … it’s ridiculous, it’s overpriced actually. the people who are supplying pushing the prices up high, because there are only a few suppliers. and they have been given the contract and they are part of the tender. it’s ridiculous expensive.’ (int_pro_sa_009, occupational therapist) if the government or medical aid did not fund the at which is needed, people were left dependent on family resources. people with id needed their own resources, whilst paid employment for people with id was scarce: ‘r: is it possible to get new ones [glasses] then? p: it is possible to get new ones, but i have to save up now the money, and that’s very, very difficult.’ (int_id_sa_011, adult with id) participants tried to get funding to buy at through charities, ngos, fundraisers and corporate sponsorship or get access to recycled at, occasionally available from care facilities. participants indicated the advantage of better networking and intersectoral collaboration to fund at through the groups listed here. policy and systems: most participants indicated the need and advantages for having an at human rights policy in place to set standards and to push organisations to increase access and provide services for at: ‘r: do you think there is a need for a national at policy programme? p: definitely. because it gives you more leverage to hold into account. we don’t even have a disability act in this country. it would also regulate what we do as a non-profit organisation. legislation is important.’ (int_pro_sa_002, management dpo) participants indicated that services for people with id were quite disjointed throughout their lives. it would help if only one access or contact point for at provision and maintenance was created within the government despite the department referred to or the age of the user. access to at was easier for children with id going to special schools, where at was provided by the school, compared with adults with id. also, people attending sheltered workplaces would be more familiar with at. both the schools and the workplaces would refer people with id to at providers: ‘p: i think that access to education that helps a lot. once they are in some kind of school, then there is the possibility to get the assessment and getting to know about it [at].’ (int_pro_sa_014, speech & language therapist) however, (high-tech) communication devices were not available through education systems. it was reported that the tender list developed by the government for public funding of at had limited at available for communication and cognition. overall there was a lack of knowledge and awareness around at and its benefits within the government: ‘p: they don’t realise, especially at a government level, that things like communication boards are better than talking in some cases, more effective’ (int_pro_sa_015, occupational therapist). ten years after ratifying, the uncrpd participants stated that implementation was poor and id was not really a priority for government: ‘p: signing it seemed like a great idea. they signed it and then they thought about it. we acted without thinking … and no one knows what to do’ (int_pro_sa_005, government representative). transport: accessibility of the outdoor infrastructure and (public) transport vehicles was limited. it helped if at providers were close by, if providers did on-site visits or if at was delivered locally and people did not have to travel far. for rural areas, it was important that local clinics were established to limit traveling. some people still had to travel far to get to their at provider: ‘r: do people have to travel a lot to get to places for assessment? p: a lot! a lot. i mean, say for example on communication, there is only one real centre in the country that does like detailed assessment. in pretoria. there might be some therapists in cape town, but it’s not that common.’ (int_pro_sa_014, speech & language therapist) transport could be a huge barrier because of costs. public transport is very poorly regulated and families or care facilities would need their own resources to cater for transport. because people with id often need someone to accompany them to or during the at assessment, transport costs such as a taxi ride can be a double expense: ‘p: the van [of my mother] broke. so we don’t have transport to transport me. so i have to wait till she fixed the van to take me’ (int_id_sa_011, adult with id). there were a few governmental initiatives to fund transportation: ‘p: there is a system in the western cape which is called health net, which is for free for public patients to come to hospitals …. p: it’s like a bus or small mini bus service. but it’s not really competent, it’s not really well run and it’s completely fully booked.’ (int_pro_sa_003, prosthetist and orthotist) one retailer mentioned a solution to overcome transport issues: ‘p: if we can do sort of satellite type systems, where if we at least trained some people in a specific region or district, and then they can then sort of start the process. and if they need you to come and consult, we can.’ (int_pro_sa_017, supplier of at) theme 3: continued usage data coding developed into five domains for continued use of at: acceptance, context, follow-up and maintenance, impact and support. acceptance: professionals indicated the importance for the user to feel comfortable with the at in order to accept it and use it daily. sometimes alternatives for at were preferred by the user or the carer. if the new at was not accepted by the family or the community, the at was not used. challenging behaviour could also be a barrier to accept and use at: ‘p: we’ve tried using pictures and things like that [for communication], but it’s challenging because of challenging behaviour. we’ve got a lot of people who take everything down what they see and throw it away.’ (int_pro_sa_010, management care provider) carers and users sometimes struggled with new at, which resulted in abandonment, especially when the use of at was very time consuming: ‘p: with the lower functioning patients we have a big challenge with that in terms of getting used to the device. for example the “b” spoon, just because the fact it looks different and it is painted in a funny way, they are not interested in it.’ (int_pro_sa_004, occupational therapist) context: to ensure continuous use of at, customisation to the user’s needs was highly important. occupational therapists played an important role in care facilities to customise at with the little resources they had. for people living with families, customisation was expected to be less: ‘r: are there any footrests that came with the wheelchair? p: there was but it has no value for her. r: aren’t they the right height? p: they are too low and you know, she’s very short if you look at where her feet are, so i have to, those things have to sit around here to really get it lifted. so we don’t ever use the footrests.’ (int_id_sa_006, caregiver) in addition, customisation of the at to the context of the user was extremely important to ensure feasibility of at. some living environments, such as shacks, were too small to fit large at or did not have electricity for at. mobility products needed to be adapted to the rural roads or glasses needed to be customised for challenging behaviour. follow-up and maintenance: there were variations in the participants’ accounts regarding implementation of structural follow-up. a lack of staff would prohibit follow-up sometimes, and at provided by the government directly to the person did not include a follow-up programme. some of the users were aware of going for check-ups, others did not feel the need. most users depended on their carers to identify the need for follow-up and maintenance to know where to go and to make an appointment: ‘p: unfortunately because these patients can’t phone they rely on others. that’s a really good point why they are not coming back …. but you also don’t want them to come back for nothing [with all the expenses to get there] and say it’s all ok.’ (int_pro_sa_003, prosthetist and orthotist) transport and funding could be a major barrier to ensure follow-up and maintenance: ‘r: where would you go to, to check it? p: cape town. but then i would be a while without it. because there is not usually somebody that goes to cape town regularly. then i must wait.’ (int_id_sa_016, adult with id) often people would go to a non-professional to repair the at: ‘r: and if it breaks where do you go? p: sometimes i tell my mom. maybe she can phone her boss, a friend maybe who can help me to fix it … sometimes there is a guy on the ground that also tries wherever he can.’ (int_id_sa_016, adult with id) facilitators to ensure follow-up, were reminders sent by the provider, maintenance identified by the user himor her-self and sometimes a proactive community approach: ‘p: we have community rehabilitation workers, under the supervision of the clinics who also go in to see if everything is ok. we have outreaches who do the follow-up as well.’ (int_pro_sa_001, government representative) impact: it was stated that it was important to make at part of the daily routine. it helped if the user enjoyed using their at. when a user was aware of the benefit the at had for her or him, continuous use was more likely to occur: ‘p: i feel i can see better when i have the glasses on. without them i feel lost’ (int_id_sa_002, adult with id). mobility devices were helping the users to undertake physical activities, which they would not be able to do without it. most users explained that the at they were using was making them feel happy. one participant did not like the pill organiser because it was too complicated to use. others struggled when using new at, but were feeling better about it over time. especially the use of a mobile phone made a lot of participants feel very happy: ‘p: for their self-confidence the mobile phone is wonderful’ (int_id_sa_018, caregiver). mobile phones enabled them to have social contacts with friends and family: ‘r: why would you like a smartphone? participant a: to communicate with other people. that also have my problem. r: and can you explain what your problem is? p: yes, i can’t read and write.’ (int_id_sa_013, adult with id) support: some users were fully dependent on carers supporting their daily use of at. others could use the at mostly independently but would need a (verbal) reminder to pick-up the at and use it. ‘r: and now if you want to use it [cell phone], can you do it on your own? or do you need help? p: sometimes on my own, sometimes with some help. r: and who do you ask for help? p: my brother’s son.’ (int_id_sa_010, adult with id) barriers to individual support in care facilities were linked to low staff to client ratios, high staff turnover or a lack of staff. independent use of at was a huge facilitator to ensure daily use of the at. users did need some type of training or instructions to do this successfully. however, training was not always feasible: ‘p: getting somebody glasses. you know that the pair of glasses will probably significantly improve the quality of life … but we don’t have the resources to support that person in terms of teaching how to look after it. so you can’t give that support. so in the end you just don’t issue.’ (int_pro_sa_011, management care provider) the different languages within south africa also made it more complicated to ensure adequate training: ‘p: i don’t think it’s only that they don’t necessarily know they have forgotten … but it’s also the people who care for them, they might also forget. a very important issue in this is language. so many of the people we work with, english is not their first language. that has to be considered in how things are explained.’ (int_pro_sa_013, psychologist) some providers would not provide at if carers were not able to support the user and some providers adapted their training to the level of id. occasionally, users or carers never received any training or instructions with the at: ‘p: if it’s one of our in-patients, a nurse will accompany them to the hospital. but they are not informed by the prosthetist or whomever how to coach and how to help. so they come back and the person stops using the device, and then the nurses ask why are you not using the device, that’s the end of it.’ (int_pro_sa_006, psychologist) peer learning helped people with id to understand how to use their at: ‘r: is it easy to use the cell phone? p: yes it’s easy. i know how to work with smartphones … i learned from my friends, without reading or anything. but i can’t read or type. i can type in afrikaans, like my name or something, but other words i can’t.’ (int_id_sa_003, adult with id) discussion this qualitative research study in the western cape province of south africa presents an overview of factors influencing at access and use for people with id. these factors can be used to guide government and health professionals to improve the current situation of at-related health inequalities and limitations for participation in society for people with id in the study setting. assistive technology can play an important role towards realising the sdgs and uncrpd, which south africa ratified in 2007. the findings raise concerns about gaps in access and usage of at by people with id and critical factors impacting these, such as attitudes towards id and at, knowledge and awareness to identify at need and at training and instructions to support the user and care network. a first potential action suggested by the authors following these findings is providing training and education on id and stigma. it is known that there is a lack of services and resources allocated to the care of persons with id globally (who 2007). part of this is because of stigma and a lack of knowledge and awareness on id and health needs at every level of society. people with id are one of the most excluded and marginalised groups in society (ali et al. 2012; hatton & emerson 2015). the majority of people with id in south africa live with family who need to cope with stigma often present within their society (mckenzie & mcconkey 2016; mckenzie et al. 2014). there is a high level of public stigma in south africa towards id mostly because of a lack of understanding and fear of the disability. education might help to reduce fear and it can also clear the confusion between mental health problems and id. in south africa, it is common to refer to id as a mental illness or psychiatric disorder (mkabile & swartz 2020). participants stated that people from society and professionals often did not seem to know the difference between certain psychiatric diagnosis, such as psychosis and id. the fact that some of the residential facilities for persons with id are housed within psychiatric hospitals, and not id care facilities or other alternatives which are not directly linked to a hospital or psychiatry based, support these findings and needs to be questioned. the organisation of services for people with disabilities in south africa still reflects a medical model approach where people with id are regarded as patients needing treatment, instead of viewing them as members of the community, where they can be supported to acquire life skills similar to non-disabled peers. this strong medical model approach may prohibit individual at user empowerment. people with id often do not have the opportunity to visit professionals themselves and request at. the extent to which the views of people with id themselves were included during at assessments also varied. self-advocacy for people with id is one of the key areas significantly lagging, which could help to raise awareness of the importance of at assessment and use. high standard, context appropriate and id-specific training programmes are limited and should be developed for the south african context. for example, these training programmes need to be mindful of indigenous knowledge to understand the social script around at in south africa. for access, the most frequent response was related to the importance of identifying at need, especially by the user themselves. people tend to focus on visible disabilities, whilst other needs are often missed or not thought of such as at to improve communication. a second potential action suggested by the authors is creating peer learning initiatives. other research has shown that peer learning can play an important role for people with id to realise which at they could use and how it may benefit them (boot, maclachlan & dinsmore 2019). people with id often need to see examples of other people with similar disabilities using at in order to realise that at is available for them and they are capable of using it (boot et al. 2019). as a result of a lack of resources and professionals to create at awareness especially in the rural areas, peer learning initiatives may be a much better option. being in a school or workshop is also an advantage in terms of identifying at need. hence, an important action will be encouraging families of persons with id to access services and for responsible authorities to ensure availability of these services. limited infrastructure and transport options were seen as a huge barrier to access at for people with id by the participants. although transport and accessibility could apply to people with all types of disabilities, it was presented as a specific barrier to people with id in relation to stigma. people with id and their care network shared experiences of being refused access to transport options. the main factor to ensure continued use is providing at support, including at training and instructions. if at is provided without any training or instructions to the user and their care network, it is likely that they will not use it. in addition, at-use will be more sustainable amongst those who are able to independently use their at. for people with id, training and instructions need to be available over time to ensure they remember how to use their at correctly. assistive technology training can be included within a peer learning environment as mentioned here. self-help groups amongst people with id and their families could offer possibilities for recurring, accessible peer learning initiatives. the number of at in use by the participants of this study varied greatly from zero to nine per person, depending on the living environment and level of id. those people living at a specialised care provider were using multiple at. these participants had multiple disabilities, which required specialised care with knowledgeable professionals providing multiple at. those participants who did not use at or only a small number of at were primarily not aware of available at, which could be beneficial to them. one critical area related to limited use of at is lack of coordinated collaboration amongst different service providers, and the end-users and their families to share resources and knowledge on id and at need. to facilitate participation and inclusion for people with disabilities in south africa, it is crucial that effective communication and collaboration between service providers and people with disabilities and their families is established (muller, ned & duvenage 2015). presently, knowledge is disjointed that results in some people with id not getting the necessary assessments and prescription of at. proactive at assessments did not take place, especially for those with severe to profound id. whilst it is known that the prevalence of certain comorbidities is related to the severity of id, such as hearing or visual impairments, participants stated that it was often not thought of, to assess people with severe id on non-visible impairments such as these. the western cape policy framework for services to people with id also primarily focuses on at supporting visible impairments such as mobility and seating (western cape government 2015). providers did not always have the skills to conduct an assessment with people with id. some of the providers mentioned that they were not aware of assessments suitable to people with id, for example, vision or hearing screening assessments for people with severe to profound id. challenging behaviour could also be a barrier for providers to conduct an assessment. however, providers were keen to search for training opportunities to develop their assessment skills for people with id. these findings show that id is neglected in the training of service providers and considerations need to be made to introduce id specific concepts in the training of rehabilitation and other relevant professionals and continued professional development opportunities in this area. south africa has a national rehabilitation policy (south africa department of health 2000) to improve accessibility to all rehabilitation services based on the principles of community-based rehabilitation (who 2010). currently, community-based workers assist with follow-up but the process is not structured and coordinated as shown by the findings. a clear understanding of the need for at by persons with id and its impact in improving their quality of life and independence is imperative for providers of community-based services. also at local policy level, there is a western cape policy framework for services to people with id (western cape government 2015) and a south african national guideline on provision of assistive devices in the public health sector (south africa department of health 2003), which should guide the process. however, participants clearly indicated that policy implementation was lacking and services for people with id were quite disjointed. further research to understand the reasons why these policies are not being implemented as they should is recommended. conclusion and way forward research within the field of id and at in the african context is rare. although this was a small-scale study focusing on one province of south africa, the findings highlight poor access and use of at by people with id in this part of the country, even though research elsewhere has shown that people with id can greatly benefit from at (boot et al. 2017; owuor, larkan & maclachlan 2017). with the perspectives of both the providers of at and the users of at, this study presents an overview and identifies priority areas that could be addressed to improve at access and use for people with id in the western cape province. to understand which actions can contribute most in different contexts, more research is needed and particularly research that foregrounds the views and experiences of people with id themselves, as well as service providers. lastly, the current growing possibilities of at and the global trend of digitalisation calls for consideration of how at is being used by people with id, so that they are not left behind. assistive technology in this aspect can be viewed broader than the external products and services, to include aspects such as universal design. acknowledgements the authors would like to thank all participants of this study for their collaboration. competing interests the authors have declared 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discussion conclusion acknowledgements references about the author(s) anisha maharaj department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa munira hoosain department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa carl lombard department of epidemiology and biostatistics, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lana van niekerk department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation maharaj, a., hoosain, m., lombard, c. & van niekerk, l., 2025, ‘factors associated with return to work among disability claimants with depression’, african journal of disability 14(0), a1737. https://doi.org/10.4102/ajod.v14i0.1737 original research factors associated with return to work among disability claimants with depression anisha maharaj, munira hoosain, carl lombard, lana van niekerk received: 24 apr. 2025; accepted: 28 july 2025; published: 22 sept. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: depression is a significant contributor to the burden of disease globally and is often associated with reduced work productivity and permanent disability. objectives: this study aimed to identify factors associated with return to work among disability claimants with depression at one insurer in south africa. method: a retrospective cohort study was conducted with 514 disability claims. univariate tests for association (chi-square and fisher) were performed to test the significance of the association between the primary outcome (disability benefit terminated as a result of return to work) and demographic and workplace factors. results: the majority of disability claimants were women (71.6%). women and claimants under the age of 60 years at the time of benefit termination had a high probability of returning to work, 80% and 99% respectively. of the 39% of claimants who had a high level of workplace support during the disability process, 95% also returned to work. nearly half (48%) of the disability claimants returned to work in less than 6 months, while most of those with a duration of disability longer than 24 months did not return to work (79%). conclusion: female gender, lower age (under 60 years), high workplace support and shorter duration of disability were all positively associated with return to work for disability claimants with depression. contribution: this study provides insights into factors associated with successful return to work for disability claimants with depression, which can guide case management and rehabilitation for this population. keywords: case management; insurance; mental health; occupational therapy; vocational rehabilitation. introduction psychiatric conditions are a significant contributor to the burden of disease in all regions of the world (tomlinson et al. 2009). depression has been identified as one of the most concerning health problems, as it is often associated with reduced productivity at work and permanent disability (ramano, buys & de beer 2016; tomlinson et al. 2009). depression results in work absenteeism and loss of productivity while the employee is present at work (ramano et al. 2016). it has also been found that individuals with depression have higher unemployment rates, increased workplace absences, decreased job retention and overall productivity impairments at work (beck et al. 2014; de vries et al. 2018; lerner & henke 2008), which may lead to a disability claim. there is global unanimity regarding the rising prevalence of depression in the workplace and the rise in mental health disability claims (alexander forbes 2019; ervasti et al. 2017; mokoka, rataemane & dos santos 2012; momentum corporate 2019; wisenthal et al. 2019). the world health organization (who) estimates that depression will be the leading burden of disease by 2030, with a current prevalence of between 10% and 15% in the general population (ramano et al. 2016; who 2011). a systematic review of cohort studies (n = 11) on the association between predictive factors and return to work among employees with depression by ervasti et. al. identified seven domains of predictive factors in the netherlands, canada, denmark, sweden and japan (ervasti et al. 2017). these factors included sociodemographic, workplace, health behaviour, clinical and illness, psychosocial, personality and labour market factors. their study is the first systematic review to provide quantitative estimates of factors contributing to return to work following depression. their definition of return to work was based on the end of disability benefits. the conclusion from the review was that ‘higher age, psychiatric and somatic comorbidity, more severe depression, and low conscientiousness were predictive of slower return to work after depression’ (ervasti et al. 2017:36). clinical and illness-related factors were the most consistent predictors of return to work following depression. clinical and illness-related factors included the treatment of depression; within an occupational therapy framework, this includes vocational rehabilitation with the goal of return to work. vocational rehabilitation interventions include cognitive work hardening (cwh) and the progressive goal attainment programme (pgap). cognitive work hardening is an evidence-based treatment modality based on the principles of physical work hardening and applied to the domains of mental health to restore cognitive functionality and work abilities required for successful return to work. this is usually carried out by an occupational therapist through graded activities that simulate the disability claimant with depression (dcwd)’s job tasks and demands (wisenthal et al. 2018), while pgap aims to improve perceptions and cognition and improve work performance (de wit et al. 2022). disability claimant with depression often have longer durations of disability benefit payments and require more in-depth and regular reviews with a reduced rate of return to work when compared to disability claimants with physical conditions (adler et al. 2006; alexander forbes 2019). this may be related to the multidimensional and persistent impact of depression on functioning (adler et al. 2006). mental health in the workplace, more specifically depression, has been identified as a public health priority and a recommended focus of research (søvold et al. 2021; wisenthal & krupa 2013; who 2022). there is limited evidence about factors associated with return to work in lowand middle-income countries (lmics) (mullerpatan & jadhav 2025). this is particularly relevant for dcwd, as they may have difficulty accessing mental health services because of the limited number of mental health service providers in lmics, language and cultural barriers, as well as social stigma and economic hardships (hoosain, mayet-hoosain & plastow 2023; jansen van vuuren, okyere & aldersey 2021; who 2017). it is therefore important to identify the factors associated with return to work for dcwd in these settings. by identifying the factors associated with successful return to work for dcwd, disability claims assessors can identify claimants who are at a higher risk of not returning to work as a result of the disability and assist with early interventions and recommendations to the employee, employer and mental health service providers. if the factors associated with successful return to work among dcwd in lmics are discussed and contextualised, it can inform future research and policies within the insurance industry and health sectors. it will assist in case management and motivation for further funding for vocational rehabilitation interventions and engagements with employers when dcwd return to work. therefore, the aim of this retrospective cohort study was to identify factors associated with return to work among dcwd at one insurer in south africa. research methods and design the research setting in the context of this study, a disability claimant refers to an employee of an employer that offers insurance for medical conditions in the form of a disability benefit. a disability claim for the employee has been admitted, and a benefit is being paid in view of their inability to perform an occupation because of depression. termination of a disability benefit was taken as an indicator of successful return to work. the first author is an occupational therapist employed to do disability claim assessments for an insurance company in south africa, providing income protection cover. this income protection cover, paid for by the employer, is often the only financial cover employees (and their families) have (alexander forbes 2019). a monthly disability benefit equivalent to 75% of their salary is paid to an employee, herein referred to as a dcwd, whereby, in the reasonable opinion of the insurer, ‘the illness i.e. depression has rendered the employee incapable of engaging for remuneration or profit in the occupation that he or she was performing immediately prior to his or her date of disablement or in any other occupation in the open labour market that he or she is (or could become) qualified for or suited to, taking into account his or her degree of disability, knowledge, training, education, ability and experience’ (momentum corporate 2019). the company insures claimants from south africa as well as namibia, lesotho, botswana, mozambique, eswatini and zimbabwe. study design a retrospective cohort study was carried out to correlate exposure to factors associated with successful return to work for dcwd while also obtaining a preliminary measure of association between the identified factors (prospective, retrospective, case-control, cohort studies – stats direct n.d.). a retrospective study design was deemed the most applicable because the first author had access to data to identify the factors associated with return to work of the full population who had been exposed (or not exposed) to the studied outcome of successful return to work. these data had been anonymised. informed consent could thus not be obtained, but an ethics waiver was received from the health research ethics committee at stellenbosch university. study population and sampling the disability claimants on the insurer’s database used in this study span all socioeconomic categories and economic sectors (alexander forbes 2019; momentum corporate 2019). total population sampling was used. the study population comprised disability claimants with the primary claim cause of depression on the insurer’s group disability database for which a final claim decision had been made between january 2017 and december 2020. the period census yielded 517 dcwd. no sample size calculation was carried out prior to data collection, as the total study population was used as the sample. dcwd who had their disability terminated because of death were excluded (n = 3) as this did not address the study aim. data collection the factors to be analysed were selected based on existing evidence from high-income countries (ervasti et al. 2017), as factors shown to be associated with the claim outcome of interest. a data capture sheet was developed to capture the factors identified from the insurer’s disability database. the data were collected by the first author and a research assistant, who were both employed by the insurer as disability claims assessors and had access to the database. the data capture process was trialled and compared between capturers to evaluate the coverage of the data capture sheet and enhance inter-rater reliability. following the successful completion of the trial, data collection continued for all claims. variables primary outcome the primary outcome was the disability benefit termination for return to work. at the point in time when the disability benefit is terminated, the disability file will be closed, and the disability claimant would need to have successfully returned to work for a minimum of 3 months with no recurrent disability (momentum corporate 2019). return to work could be in the format of onsite work, working from home (wfh) or a hybrid format. factors gender: categorised as men and women as self-proclaimed on the disability claimant’s signed declaration form, as this is how it was recorded in the claims dataset. no provision was made for gender non-binary in the dataset. age: broken down into age brackets of 18–29 years, 30–39 years, 40–49 years, 50–59 years, and above 60 years of age on the date of disability benefit termination. duration of disability: number of months from the dcwd’s date of disability to the disability benefit termination date for return to work or censored at death or at the end of follow-up (24 months). level of education: the highest level of education obtained by the dcwd. strength rating: the dictionary of occupational titles (dot) is commonly used in functional capacity evaluations (fce), disability claims assessments and vocational rehabilitation (opsteegh et al. 2010). the dot classifies jobs into categories based on the physical demands of an occupation: sedentary (exerting up to 4.5 kg of force occasionally and/or a negligible amount of force frequently to handle objects; sedentary work involves mostly sitting, possibly with some walking or standing for short periods); light (exerting up to 9.5 kg of force occasionally and/or up to 4.5 kg of force frequently and/or a negligible amount of force constantly to handle objects); medium (exerting 9.6 kg – 22.7 kg of force occasionally and/or 4.5 kg – 11.3 kg of force frequently and/or greater than negligible up to 4.5 kg of force constantly to move objects) and heavy (exerting 22.7 kg or more of force occasionally and/or 11.3 kg of more of force frequently and/or 4.5 kg or more of force constantly to handle objects) (opsteegh et al. 2010). income disability bracket: disability benefit amount received by the dcwd. broken down into income brackets of zar1000.00 zar19 999.00, zar20 000.00 zar39 999.00, zar40 000.00 zar59 999.00 and above zar60 000.00. for comparison, $1.00 = zar18.00 / eur1.00 = zar20.00 at the time of publication. functional capacity evaluation: a comprehensive set of standardised assessments performed to determine a claimant’s physical ability in relation to the elected occupation (wind et al. 2006). job demands: refers to the level of cognitive demands, namely higher level of cognitive demands, moderate level of cognitive demands and lower level of cognitive demands. workplace support: refers to how supportive the employer is during the disability process and how willing the employer is to engage in the return-to-work process for the dcwd. this is categorised into high, moderate and low levels of support by the insurer. vocational rehabilitation and/or case management: case management and vocational rehabilitation are used interchangeably in this study and indicate that the dcwd has undergone rehabilitation interventions with the aim of return to work while in receipt of a disability benefit. type of vocational rehabilitation and/or case management: occupational therapy interventions include cognitive work hardening, a concept of applying work hardening concepts to the domains of mental health to develop cognitive skills required for work performance (wisenthal et al. 2018), and the progressive goal attainment programme, which aims to improve perceptions and cognition and improve work performance (de wit et al. 2022) as part of vocational rehabilitation. psychological intervention included psychotherapy. intervention can include one or more therapies at a time, usually recommended by the disability claims assessor and paid for by the insurer. duration of case management: number of months from commencement of case management to termination of case management data analysis descriptive statistics consisted of frequencies and percentages. the primary outcome, disability benefit termination for return to work, was cross-tabulated with various demographic and workplace factors. to test for a difference in the percentage of benefit terminations between the levels of a factor, the chi-square test or fischer exact test was used. the latter was used when the data were sparse for certain levels (n < 5). a significance level of 0.05 was used. the time to termination of disability was analysed using a kaplan–meier failure function. this function estimates the cumulative benefit termination over the time of the study. apart from the kaplan–meier curve with 95% confidence intervals, the cumulative terminations are reported for 6, 12, 18, 24 and 25 months as well as the study population at risk. ethical considerations the health research ethics committee (hrec) at stellenbosch university approved this study (ref: s21/08/155) on 17 december 2021. a waiver of consent was provided by hrec as the degree of risk that this study posed to participants to whom the data were linked, as well as the degree of risk posed to participants in the waiving of consent, was no more than minimal; this study made use of retrospective (secondary) data, which was anonymised from initial data collection. in addition, it was impracticable to obtain consent because of the quantity of data. lastly, the data in this study were aggregated and anonymised in the reporting of findings. thus, no individual cases were reported on, and anonymity was upheld. results a total of 517 claims formed the sample for this study. disability claimants for whom benefits were terminated as a result of death (n = 3) were excluded. of the 514 claims analysed, 77.2% (n = 397) were terminated as the dcwd returned to work. return to work there were 397 participants (77.2%) who returned to work within the study follow-up of 24 months. there were 3 deaths that censored the duration. in figure 1, the termination of disability curve is shown, and in table 1, the estimated termination probabilities at 6-month intervals are presented. figure 1: termination of disability curve. table 1: probability of termination of disability benefits over the study period. the median time to termination was 7 months, and the rate of termination slowed down after 12 months on disability. demographics of disability claimants with depression table 2 shows the prevalence of return to work for the demographic variables of the claimants. table 2: demographics of disability claimants with depression. gender, age, level of education and disability benefit were significantly associated with successful return to work. from table 2, we have male gender, age above 60 years, secondary education and receiving higher benefits as the demographic profiles associated with a lower probability of returning to work. the physical strength rating of the job and the job demands were not significantly associated with successful return to work. factors that predicted return to work or not among disability claimants with depression in group 1, with the outcome of dcwd who returned to work, most dcwd were between the ages of 18 years and 59 years (n = 374), but some were over 60 years old (n = 23). in group 2, with the outcome of dcwd who had not returned to work, the majority of dcwd were over the age of 60 years (n = 113), with a small number of dcwd younger than 60 years (n = 4). of the 397 dcwd who returned to work in group 1 outcome, 74.06% were women (n = 294), while only 25.94% were men (n = 103). of the 117 dcwd who did not return to work in group 2 outcome, 63.26% were women (n = 74), while 36.75% were men (n = 43). the number of women was higher in both outcome groups. disability claimants with depression who had returned to work (group 1) had a higher level of workplace support (77.24%) when compared with dcwd who had not returned to work (group 2), who had lower workplace support (22.76%) during the disability benefit process. this study showed that age, gender, workplace support and duration of disability were all factors that influenced whether a dcwd would return to work among the two groups in terms of the outcomes. factors associated with successful return to work for disability claimants with depression cross-tabulation of factors was conducted to identify the factors associated with benefit termination as a result of return to work. the pearson chi2 and probability ratio for each factor analysed are indicated in table 3. table 3: pearson chi2 and probability ratio for each factor analysed for disability benefit termination. workplace support and fce on file were significant factors associated with the probability of returning to work. specifically, a low level of work support and fce on file are the work-related profiles that had a lower probability of returning to work. workplaces that offer less support to their employees showed a lower termination for return to work (p < 0.001). workplaces with low support had a termination rate of 34.21% (n = 13), compared to highly supportive workplaces with a successful return to work of 94.53% (n = 190). disability claimant with depression who had undergone an fce had a lower disability benefit termination for return to work of 59.43% (n = 126) (p < 0.001). this could be an indication that dcwds with more serious illnesses were more likely to require an fce in the disability claim process. this, however, does show that fces did not support return to work. disability claimant with depression who had undergone vocational rehabilitation and/or case management had a successful return to work rate of 80% (n = 68). of the dcwd who received vocational rehabilitation and/or case management, 81.25% (n = 52) received occupational therapy intervention, which included cwh and/or pgap, while 75% (n = 15) of these dcwd received a combination of occupational therapy and psychotherapy interventions. dcwd who were part of a vocational rehabilitation programme for 4–6 months had a 100% rate of return to work (n = 26), while dcwd with 3 months or less had a return-to-work rate of 86.21%. disability claimants with depression who underwent 7–12 months of vocational rehabilitation and case management had a return-to-work rate of 68.75% (n = 11). lastly, dcwd who underwent more than 12 months of vocational rehabilitation and/or case management had a return to-work-rate of 80% (n = 6). women dcwd had a higher rate of engagement in case management (17.66%) when compared to men (13.70%). discussion this study expands on the sociodemographic, workplace, vocational rehabilitation and illness-related factors associated with successful return to work among dcwd at one insurer in south africa. gender (female), age (younger than 60 years) and high workplace support are all positive prognostic factors associated with return to work for dcwd. the results confirm that women had a higher rate of return to work, as almost 80% of women returned to work following a termination of a disability claim for depression, compared with 70.5% of men. research evidence mirrors the finding that some dcwd returned to work more easily than others (grobler 2018; ramano et al. 2016; tomlinson et al. 2009). a german study similarly found that female survivors of cancer had a higher rate of return to work than male survivors (85% vs. 73%) (arndt et al. 2019). it is the first author’s experience in a clinical setting (at the insurer in this study) that more dcwd who are women engage in vocational rehabilitation and that women are more compliant with case management; therefore, a higher return to work for women is understandable. the majority of southern africa’s workforce is within the prime working age of 25–54 years old (42.37%), while the minority is of the mature working age of 55–64 years old (6.8%) (statistics south africa, risenga maluleke 2021). the typical onset of depression is between 20 years and 30 years of age, with an average age of onset at 26 years in southern africa, which coincides with the beginning of the prime working life for individuals (statistics south africa, risenga maluleke 2021). disability claimant with depression below 60 years old had a significantly higher chance of return to work, possibly because of them being within the prime working age. in addition, return to work allows dcwd to engage in the meaningful activity of work tasks and improves work capacity after a period of prolonged workplace absence because of their depression. a higher disability benefit termination for dcwd was associated with a higher level of education. this association is supported by a recent norwegian study, which concluded that higher educated workers had a higher likelihood of sustained return to work following long-term sick leave because of depression (meling et al. 2023). while a 2000 south african study found similar associations between levels of education and successful return to work (watt & penn 2000), more recent african studies found no association (masterson et al. 2023; modise et al. 2024). a possible reason for the association may be that persons with a higher level of education find it easier to adjust to a work environment following a prolonged period off work. a scoping review by de vries et al. indicates that high job demands, together with low organisational support, resulted in longer duration of sick leave for persons with mental health disorders (de vries et al. 2018). the authors further note that younger age (under 60) and support from co-workers and supervisors were predictors of successful and earlier return to work (de vries et al. 2018). these predictors of successful return to work can also be noted in this study, as younger age (under 60 years) and high workplace support are indicated as positive prognostic factors for termination of disability benefit for return to work among dcwd. over recent years, vocational rehabilitation has shifted to have a more integrated approach involving an inter-disciplinary team and taking into consideration the sociodemographic, workplace and personal factors of dcwd (saonatse, de witt & van niekerk 2019). case managers within the insurance industry aim to guide the process of return to work for dcwd to ensure a successful return to work with the assistance of an occupational therapist. dcwds who have undergone rehabilitation have a disability benefit termination for return to work prevalence of 80%. a feasibility study carried out in the netherlands noted that supporting disability claimants on long-term disability with vocational rehabilitation is a facilitator for return to work (de geus et al. 2023). this result can be used in a practical setting to motivate further case management interventions during the initial 24 months of disability for dcwd. return to work and reintegration within the workplace are complex and dynamic processes, and occupational therapists have the necessary skills and knowledge to navigate and guide this process while ensuring that the dcwd remains at the centre through using a client-centred approach. the return-to-work process for dcwd is an interplay between the dcwd, the insurer’s disability case manager, the rehabilitation providers and the employer. each role player has their own responsibility during this process, and each needs to consider the sociodemographic, workplace, vocational rehabilitation and illness-related factors when working towards the common goal of successful return to work for dcwd. limitations of the study as a period of this study included the first year of the coronavirus disease 2019 (covid-19) pandemic (2020), the return to work of a percentage of claimants with depression who received a disability benefit may have been impacted. this was not specifically accounted for during data analysis. this study analysed data from only one insurer’s database in southern africa, which is a limited sample. data from the insurer were limited to two genders only (men and women) and did not account for gender non-binary. as dcwd did not have the option of identifying as non-binary, they may have been misrepresented in the data. factors analysed for association were limited to those included in the database and highlighted in previous studies (ervasti et al. 2017); thus, there may have been other relevant associated factors that were not represented. the study utilised existing retrospective data from one insurer. while it is acknowledged that the insurer’s data capture process had been refined over several years and is subject to regulated audits, the authors did not verify the accuracy of the data received from the insurer. implications for practice and future research this study identified groups of dcwd who need to be assisted earlier in the disability claim process with interventions to ensure a more successful and permanent return to work. these interventions include engaging with employers (human resources as well as team leaders) earlier to ensure that support is provided to the dcwd during the rehabilitation process. furthermore, there needs to be ongoing training sessions and engagements with the employer by the disability case manager and rehabilitation providers, such as occupational therapists and psychologists. engagement can take the form of psychoeducation and upskilling for ongoing support and recommendations for reasonable accommodations for dcwd within the workplace. the findings add evidence suggesting the insurance industry should adopt a more person-centred and holistic approach when assessing disability claims for dcwd, as the literature has identified multiple factors that are associated with a successful return to work across all domains. taking these factors into account during the case management and rehabilitation processes, prolonged periods of workplace absence can be prevented. lastly, the factors identified can assist in case management policy development within the insurance industry in south africa and motivate further funding for vocational rehabilitation interventions and engagements with employers. further studies on the individual-related and specific illness-related factors for dcwd and the strength thereof can be undertaken to identify further factors for a successful return to work that may influence practice. future qualitative research can also investigate reasons for a more successful return to work in certain groups of claimants. the methodology used in this study could be used in future studies for disability claimants with other common mental health disorders to determine the factors associated with successful return to work in these populations. conclusion this study identified dcwd who successfully returned to work during a 3-year period and gathered data on the strength of association of the sociodemographic, workplace and illness-related factors for return to work. it is concluded that gender (women), age (younger than 60 years old) and workplace support (higher levels of support) are all positive prognostic factors associated with return to work for dcwd. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.m., m.h., c.l. and l.v.n. each contributed to the study conception and design. a.m. performed the material preparation, data collection and analysis. a.m. contributed to the first draft of the article. m.h., c.l. and l.v.n. contributed to the subsequent versions of the article. all authors contributed to the article, discussed the results and approved the final version for submission and publication. 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an intervention study’, work 62(4), 599–613. https://doi.org/10.3233/wor-192893 wisenthal, a., krupa, t., kirsh, b.h. & lysaght, r., 2018, ‘cognitive work hardening for return to work following depression: an intervention study’, canadian journal of occupational therapy 85(1), 21–32. https://doi.org/10.1177/0008417417733275 world health organization (who), 2011, world report on disability, viewed 18 july 2020, from https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/world-report-on-disability. world health organization (who), 2017, who mental health atlas 2017, viewed 26 october 2023, from https://www.who.int/publications/i/item/mental-health-atlas-2017. world health organization (who), 2022, who guidelines on mental health at work, viewed 26 october 2023, from https://www.who.int/publications/i/item/9789240053052. introduction relational aspects of research personal reflections on the supervisory or mentor relationship collaboration on a disability and sexuality project acknowledgements references about the author(s) poul rohleder department of psychosocial and psychoanalytic studies, university of essex, colchester, united kingdom citation rohleder, p., 2025, ‘research as relationships: bringing our humanness into research’, african journal of disability 14(0), a1681. https://doi.org/10.4102/ajod.v14i0.1681 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper research as relationships: bringing our humanness into research poul rohleder received: 13 feb. 2025; accepted: 16 june 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction one of the most enjoyable moments in my experience of being involved in research took place in 2015 at a research project planning workshop in cape town, south africa. i was part of a research team that included prof. leslie swartz, who was meeting with potential participants to discuss a new research project on sexuality and physical disability. at some point in the morning, i was in the process of explaining the proposed use of photovoice as a method for collecting data. photovoice is a participatory action research method that invites research participants to create images that symbolise or reflected aspect of the topic in question, in this case their experience of themselves as a sexual person (see hunt et al. 2020). sexuality is typically regarded as a ‘sensitive’ research topic, requiring a thoughtfulness about the potential intrusive and shaming aspects of enquiring about matters of sexuality, and it was felt that inviting participants to set the agenda of a research interview prompted by the photographs they generated, would be a good way to proceed in exploring something personal and ‘sensitive’. in an effort to calm what we thought may be potential anxieties or insecurities of some of the participants about what they were being invited to photograph, i reassured everyone that we were not asking them to take images of a sexual nature. there were some nods of understanding. and then we heard one participant ask, ‘but why not?’ in a lovely, curious, ordinary way. everyone laughed. ‘yes, why not?’ another one said. this sparked a long, lively and enjoyable conversation about sex, sexuality, disability and representation, and created a bond between us all. it humanised a ‘sensitive’ topic, an experience of self, which is so often dehumanised. relational aspects of research the one thing i have learnt above all else in doing research is that research is about relationships. as research students, we first learn about research in terms of different epistemological positions and methods of collecting and analysing data, about the ethics and management of research projects, how to frame research questions and hypotheses, inclusion and exclusion criteria for study participants, and so on. the nuts and bolts of research. all of that is important, but none of that really matters, if you do not have good relationships to start with. not just good relationships among researchers, but with participants too. as a psychotherapist, i know how part of what makes good relationships is the space for a range and depth of feelings, the capacity to compromise and meet one’s own as well as others’ emotional needs, mutuality and reciprocity. the american psychoanalyst, jessica benjamin (1988:19) stresses the importance of recognition for the development of the self and establishment of relationships. she states that ‘the individual grows in and through the relationship to other subjects’, but for that to happen, the individual needs to be recognised by the other as a unique subject, an individual with their own subjectivity, and, in turn, the individual needs to recognise the other as a unique subject. we internalise the recognition (and misrecognition) from others to form part of our sense of self. there are also different forms of relationships. we might speak of vertical and horizontal relationships. vertical relationships involve a hierarchy, a top-down relationship, with one in position of relative authority over another, such as a parent–child relationship or teacher–student relationship. a good-enough vertical relationship facilitates the healthy development of the one in the ‘lower’ position. a vertical relationship that involves domination over the other is damaging. a horizontal relationship involves some level of equality, such as friendship relationships. however, in horizontal relationships, there may be differences that inevitably come in to create potential hierarchies. for example, in a friendship, differences in gender or socio-economic status may create some dynamic of inequality. research is not psychotherapy, but it often involves a relationship between the ‘researcher’ and the individual ‘subject’ being studied. when it comes to research, there are assumptions about what kind of research generates ‘proper’ knowledge, and what gets relegated as inappropriate and less ‘proper’ (chamberlain 2015). ‘proper’ research is often understood to be research that is positivist in its epistemological position, emphasising the importance of objective observation of the subject of research. this tends to be a vertical relationship. here the researcher is objective in his or her observation of the subject being studied. but it can so often be the case that the human ‘subject’ of research ends up not being a subject at all, but rather an object. they become the object for the researcher, an object with little or no recognised subjectivity. in research on people with disabilities, research is often conducted as an oppressive ‘clinical gaze’ that focuses only on impairment and ‘abnormality’ (condrau 2007; garland-thomson 2009). while medical research is necessary, some of it can be conducted in a manner that can be dehumanising; research on people with disabilities, rather than research with. furthermore, the idea of an ‘objective’ researcher has been contested. we can never really be fully objective. if we are human, we have feelings, a subjectivity with a history, and we cannot keep that ‘outside’ of any research activity. research that follows more social constructionist epistemology tends to break down some of the authoritative top-down forms of research (chamberlain 2015) to involve more humanising ways of working. one might say aiming to achieve both vertical and horizontal forms of research relationships. that is not to say that more ‘positivist’ research cannot attempt to do this too. even though most research encounters are short-lived, involving only one interview, such encounters do involve relational aspects. in the project, we utilised participatory research methods. participatory research is an approach to research that emphasises inclusion and collaboration (kagan, burton & siddiquee 2008). it aims to promote research where researchers work ‘alongside the primary sources of knowing’ (goodley & lawthorn 2005:136), which promotes change and empowerment and not just the generation of knowledge. however, when it comes to implementation in practice, ‘participation’ can mean many things, and can include minimal consultation on an advisory board, or just sharing information, or activities of greater participation such as deciding and acting together on a project. participation research might have elements of inclusion, but it does not necessarily mean that relationships that involve recognition, respect and reciprocity are at play. personal reflections on the supervisory or mentor relationship the relational aspects of research cannot be learnt through textbooks, nor by going on a training workshop. it partly, of course, depends on the personality characteristics of the individual. but a key factor here, i think, is the supervisor or mentor of the student of research. this is an important relationship, a vertical relationship, and one, like many other mentor–mentee relationships, that becomes internalised to form part of one’s way of being. it is through my relationship with prof. leslie swartz that i learnt the importance of forming good relationships in research. i first met leslie (if i may address him here informally) in 2001, when i came to do my psychology honours degree at stellenbosch university, and he became my personal tutor. we were both new arrivals at a university, which historically would have likely not have been our scholarly ‘home’. for various reasons, i felt like i did not quite fit in, but they offered an evening programme that suited my circumstances. leslie too found himself in a new, different environment. as he became my personal tutor, i felt he recognised something of the ‘outsider’ in me, and i think i recognised something of the ‘outsider’ in him. years later, we mused that we ‘found each other’ that year. i remember the first day meeting in his office, an office full of piles of papers and books. he was warm, colourful, interested, enthusiastic, and encouraging. his empathy and deep interest in what it means to be human are reflected in the depth of his work in disability studies. in the subsequent year, i stayed to do a research masters, and he became my supervisor. thereafter, i went to a different university to complete a training in clinical psychology, but remained in contact, and returned to do a doctorate at stellenbosch university, with him as my supervisor. i combined my interest at the time on human immunodeficiency virus (hiv) and sexual health with his interest in disability studies, doing my phd on hiv and people with disabilities. we also worked as colleagues on a different collaborative education research project. i like to think that we also became friends. he met my partner, came to our wedding, and even after i left south africa, we remained in touch, and continued to work together. this is because he fostered a good relationship, one that encouraged me to overcome my initial anxieties around confidence, which contributed to me feeling more at ease with myself and what i had to give, because he was interested, and i felt recognised. as a student, i could observe that this was, and is, his strength. as busy as leslie is, he made sure to carve out time to really speak with you, not just about work and what had to be done, but about you. he was encouraging without pushing or demanding; patient, but eager to also try and move you into gear. here was a vertical relationship, without domination, where there was the creation of some horizontal ways of relating, without loss of authority and experience. however, it wasn’t all one way. after all, a good relationship is reciprocal and involves mutual recognition. i felt leslie wanted to bring out the best in others, and in turn, he allowed it to bring out the best in him. this was also not an idealised observation. there could also be some irritations and frustrations expressed, even anger. nevertheless, humaneness involves a range of feelings. i never saw him ‘talk down’ to anyone. as a researcher, for leslie, people were not objects, they were real subjects, subjects who had interesting lives, often difficult ones, who had experience and views that mattered. it was not only in observing these relational qualities but also experiencing it in our relationship as it evolved over the first few years, that i came to learn how to do research differently, and to internalise a way of working. the development of such a relationship, and in turn the fostering of relational qualities that might facilitate a more humane and thoughtful research practice, requires time and an academic environment that nurtures such relational qualities. however, in many, if not most, universities, academics are increasingly overloaded with work, and pressed for time, and there exists a corporate culture of student satisfaction metrics. such practices may discourage the development of quality relationships. collaboration on a disability and sexuality project in our disability and sexuality research project, the workshop was the start of a 4-year journey of creative collaboration on a project that evolved along the way, which generated different stories about the sexuality of men and women with physical disabilities in south africa (see hunt et al. 2021; rohleder et al. 2021). in the initial workshop, when the one person asked ‘but why not?’, they made an important intervention to invite recognition and visibility of something, which is always often unrecognised and made invisible. that is, people with disabilities have sexual bodies and have sex too. the unequal and dehumanising treatment of people with disabilities is well-documented (world health organization [who] & world bank 2011). one of many ways in which people with disabilities may be dehumanised, is in the area of sexuality. people with disabilities have so often been subject to denigrating attitudes that frame their sexuality as potentially dangerous or as non-existent (e.g. milligan & neufeldt 2001; nguyen, liamputtong & monfries 2016; rohleder et al. 2018). people with disabilities may be vulnerable to sexual abuse (mueller-johnson et al. 2014). societal dictates about the body and attractiveness, may result in some people with disabilities being perceived as undesirable and ‘undatable’ (e.g. hunt et al. 2018; marini et al. 2011). these sorts of attitudes not only represent social barriers that exclude people with disabilities from full participation and enjoying fully sexual lives but also have negative implications for sexual and reproductive health (carew et al. 2017). these attitudes have the effect of oppression of people with disabilities as intimate citizens; that is, where ‘intimate citizenship’ concerns our rights, agency and responsibility to make personal and private decisions about when we share intimacy, how we are intimate and with whom (ignagni et al. 2016; plummer 2001). these are the sorts of issues of social justice that leslie cares deeply about, and that he brought out further in me. in our research project, one of the key pillars of the work was the formation of collaborative relationships that enabled us to explore these ‘sensitive’ personal topics in more humane and creative ways. good relationships were formed, not only among the research team but also between the ‘researchers’ and ‘participants’ and between some of the participants themselves. these relationships enriched the project and our experience in it. leslie’s involvement and enthusiasm inspired much of this direction. as with any research project, the work came to an end, but the people are not forgotten. the fact that this journal has created this special issue is testament to the enormous contribution that prof. leslie swartz has made to research on the african continent and beyond. his career contribution leaves a legacy of excellent, important, capacity-building research, but more than that, a legacy of lasting relationships formed and nurtured, which continue to do the work that is much needed. acknowledgements competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution p.r. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the author is responsible for this article’s results, findings, and content. references benjamin, j., 1988, the bonds of love: psychoanalysis, feminism and the problem of domination, pantheon books, new york, ny. carew, m., braathen, s., swartz, l., hunt, x. & rohleder, p., 2017, ‘the sexual lives of people with disabilities within lowand middle-income countries: a scoping study of studies published in english’, global health action 10(1), 1337342. https://doi.org/10.1080/16549716.2017.1337342 chamberlain, k., 2015, ‘epistemology and qualitative research’, in p. rohleder & a. lyons (eds.), qualitative research in clinical and health psychology, pp. 1–17, palgrave macmillan, basingstoke. condrau, f., 2007, ‘the patient’s view meets the clinical gaze’, social history of medicine 20(3), 525–540. https://doi.org/10.1093/shm/hkm061 garland-thomson, r., 2009, staring: how we look, oxford university press, oxford. goodley, d. & lawthom, r., 2005, ‘epistemological journeys in participatory action research: alliances between community psychology and disability studies’, disability & society 20(2), 135–151. https://doi.org/10.1080/09687590500059077 hunt, x., braathen, s.h., chiwaula, m., carew, m.t., rohleder, p. & swartz, l., 2021, physical disability and sexuality: stories from south africa, palgrave macmillan, basingstoke (open access). hunt, x., swartz, l., braathen, s.h., jordan, c. & rohleder, p., 2020, ‘(re)presenting the self: questions raised by a photovoice project concerning sexuality conducted with people with physical disabilities in south africa’, disability & society 35(6), 876–901. https://doi.org/10.1080/09687599.2019.1649125 hunt, x., swartz, l., carew, m., braathen, s., chiwaula, m. & rohleder, p., 2018, ‘dating persons with physical disabilities: the perceptions of south africans without disabilities’, culture, health & sexuality 20(2), 141–155. https://doi.org/10.1080/13691058.2017.1334964 ignagni, e., fudge schormans, a., liddiard, k. & runswick-cole, k., 2016, ‘“some people are not allowed to love”: intimate citizenship in the lives of people labelled with intellectual disabilities’, disability & society 31(1), 131–135. https://doi.org/10.1080/09687599.2015.1136148 kagan, c., burton, m. & siddiquee, a., 2008, ‘action research’, in c. willig & w. stainton-rogers (eds.), the sage handbook of qualitative research in psychology, pp. 32–53, sage, london. marini, i., chan, r., feist, a. & flores-torres, l., 2011, ‘student attitudes toward intimacy with persons who are wheelchair users’, rehabilitation research, policy and education 25(1–2), 15–25. https://doi.org/10.1891/216866511805001109 milligan, m.s. & neufeldt, a.h., 2001, ‘the myth of asexuality: a survey of social and empirical evidence’, sexuality & disability 19(2), 91–109. https://doi.org/10.1023/a:1010621705591 mueller-johnson, k., eisner, m.p. & obsuth, i., 2014, ‘sexual victimization of youth with a physical disability: an examination of prevalence rates, and risk and protective factors’, journal of interpersonal violence 29(17), 3180–3206. https://doi.org/10.1177/0886260514534526 nguyen, t.t.a., liamputtong, p. & monfries, m., 2016, ‘reproductive and sexual health of people with physical disabilities: a metasynthesis’, sexuality and disability 34(1), 3–26. https://doi.org/10.1007/s11195-015-9425-5 plummer, k., 2001, ‘the square of intimate citizenship: some preliminary proposals’, citizenship studies 5(3), 237–253. https://doi.org/10.1080/13621020120085225 rohleder, p., braathen, s.h., carew, m., chiwaula, m., hunt, x. & swartz, l., 2021, ‘creative collaboration on a disability and sexuality participatory action research project: a reflective diary account’, qualitative research in psychology 18(2), 250–270. https://doi.org/10.1080/14780887.2018.1499837 rohleder, p., braathen, s.h., hunt, x., carew, m. & swartz, l., 2018, ‘sexuality erased, questioned and explored: the experiences of south africans with physical disabilities’, psychology & sexuality 9(4), 369–379. https://doi.org/10.1080/19419899.2018.1500935 world health organisation & the world bank, 2011, world report on disability, who and the world bank, geneva. abstract introduction confirm the nature of professions and professional degrees opportunities and obstacles in professional preparation climate of transformation inclusion and disability policies support for students with disabilities funding obstacles at the university site obstacles to practical and fieldwork experience negative attitudes and assumptions of individual deficit self-advocacy as a way to overcome the obstacles conclusion acknowledgements references about the author(s) sibonokuhle ndlovu wits school of education, university of witwatersrand, south africa gender, race and identity studies, university of kwazulu-natal, south africa elizabeth walton wits school of education, university of witwatersrand, south africa citation ndlovu, s. & walton, e., 2016, ‘preparation of students with disabilities to graduate into professions in the south african context of higher learning: obstacles and opportunities’, african journal of disability 5(1), art. #150, 8 pages. http://dx.doi.org/10.4102/ajod.v5i1.150 original research preparation of students with disabilities to graduate into professions in the south african context of higher learning: obstacles and opportunities sibonokuhle ndlovu, elizabeth walton received: 04 aug. 2014; accepted: 30 aug. 2015; published: 24 feb. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: persons with disabilities continue to be excluded from professions in south africa despite legislation on non-discrimination and equity. objectives: we sought to identify both the opportunities and obstacles that students with disabilities face in professional degrees. method: selected texts from the south african and international literature were analysed and synthesised. results: students with disabilities are afforded opportunities to graduate into professions through the current climate of transformation, inclusion and disability policies, various support structures and funding. these opportunities are mitigated by obstacles at both the higher education site and at the workplace. at university, they may experience difficulties in accessing the curriculum, disability units may be limited in the support they can offer, policies may not be implemented, funding is found to be inadequate and the built environment may be inaccessible. fieldwork poses additional obstacles in terms of public transport which is not accessible to students with disabilities; a lack of higher education support extended to the field sites, and buildings not designed for access by people with disabilities. at both sites, students are impacted by negative attitudes and continued assumptions that disability results from individual deficit, rather than exclusionary practices and pressures. conclusion: it is in the uniqueness of professional preparation, with its high demands of both theory and practice that poses particular obstacles for students with disabilities. we argue for the development of self-advocacy for students with disabilities, ongoing institutional and societal transformation and further research into the experiences of students with disabilities studying for professional degrees. introduction confirm south africa has legislation and policies that protect the rights of people with disabilities and promote their advancement (republic of south africa 1996, 1998, 2000). the reality on the ground, however, is that people with disabilities continue to be excluded from professional work. disability is defined as difficulties confronted in functioning because of impairment or activity limitations (statistics south africa 2012), and using this definition, persons with disabilities are revealed to make up 10% of the total population. the commission for employment equity, which was carried out in the years 2009–2010, indicated that 3909 persons with disabilities were professionally qualified and employed, which translates to about 0.6% of the total disability population (ramutloa 2010). the figures suggest that very few persons with disabilities acquire professional degrees, and even those who do are excluded from professional jobs. this exclusion might result from non-implementation of equity and non-discrimination policies (maja et al. 2011). employers could also hold the view that persons with disabilities are inadequately skilled for the professional labour market (swartz & schneider 2006). addressing this issue is important because persons with disabilities should be seen actively participating in the skilled labour force that south africa seeks for the 21st century (carrim & wangenge-ouma 2012). as the supply of professional skills is dependent on the output from higher education institutions (heis) (earlie 2008), it is necessary to consider what obstacles and opportunities students with disabilities encounter in heis as they prepare to enter the professional workplace. this article critically explores the current literature relevant to the professional preparation of students with disabilities. we reviewed the south african literature from selected books, journal articles and the internet in order to understand the obstacles confronting students with disabilities as well as the opportunities available to them. we scanned the literature available on google scholar and proquest, as well as dissertations on the university of witwatersrand’s library catalogue, using a combination of the search terms ‘disability’, ‘professions’, ‘students with disabilities’, ‘access’, ‘transformation’ and ‘inclusion’. this search yielded 65 texts, published between 1970 and 2015. these texts included south african and international books, book chapters, peer reviewed journal articles, policy documents, the constitution of south africa, research reports, as well as online resources like unpublished conference and discussion papers. the international literature has also been included in this article for a broad comparison of the higher education of students with disabilities. we set the scene by discussing professions and their preparation. this is important because not only are professional degrees different from other degrees, the very nature of what counts as ‘professions’ is contentious (turner & hodge 1970). the main claim of this article rests on the unique characteristics of professions, which make them particularly difficult to access by students with disabilities. after describing the opportunities and obstacles to the professionalisation of students with disabilities, we suggest, based on research, that self-advocacy could enable students with disabilities to confront some of the obstacles they face. we conclude by arguing for institutional reform through identifying and addressing exclusionary practices and call for further research into the experiences of students with disabilities studying professional degrees. the nature of professions and professional degrees the nature of professional knowledge makes professional degrees different from other degrees in higher learning. a professional degree is a ‘high level qualification’ (macdonald 1995:161) characterised by the accumulation of esoteric or abstract knowledge which can be applied in complex situations (abbott 1988). professional expertise operates as professionals draw on theoretical knowledge to inform their judgments and action in practice (winch 2014). this requires, says freidson (2001:35), ‘a foundation in abstract concepts and formal learning’. professional curricula, thus, have unique characteristics in that they require both theory and practical application. shay (2013:575) distinguishes professional curricula from theoretical curricula by saying that the logic of professional curricula ‘is the demands of the practice’. she also explains that professional curricula differ from practical curricula in that ‘the principles informing the practice are derived from theory’. students graduating into professions, thus, need knowledge of theories and the ability to recognise the contexts to which this theory applies (clarke & winch 2004). the development of professional reasoning, judgment and action is a vital part of professional education and, says winch (2014:58), should be ‘reflected in appropriate assessment arrangements linked to professional curricula’. this article argues that it is in the uniqueness of professional preparation, with its high demands on both theory and practical application, that poses particular obstacles for students with disabilities. professional degrees are distinct from other programmes in that they are associated with professional bodies who accredit them (harvey & mason 1995). accreditation is based on the suitability of the institution to offer a particular professional degree. for example, during apartheid, the professional degree of architecture was only offered in internationally recognised white institutions (van rensburg 2011), meaning that historically disadvantaged institutions could not offer architecture because they were not accredited to do so. professional bodies are also involved in the design of the curriculum of the respective professional degrees in higher learning (jamal & bowie 1995). according to harvey & mason, ‘professional bodies define the specific competencies, including the underpinning knowledge, that are required by graduates for them to be effective practitioners’ (harvey & mason 1995:1). professional bodies are not only involved in curriculum design, defining competencies and prescribing specific knowledge, but are further involved in assessing competence in practice. though the procedure might not be standard for all professional degrees, students in these programmes are examined for their grasp of academic theory in higher learning and are further examined for competence in practice by the relevant professional bodies. professionalisation is a term used to refer to learning for a professional occupation. whilst the term has been used differently in various contexts, we use the term in line with griffin, green and medhurst’s (2005) view that it is the way in which people are acculturated into an academic discipline and shaped, so as to be recognised, legitimised and accommodated as professionals in the working context in which they will operate. in higher learning the academic staff play a very important role in the professionalisation of students with and without disabilities (vickerman & blundell 2010). lecturers themselves are regarded as professionals because lecturing in itself is categorised as a higher level profession (haralambos & holborn 1991). the concept of professions has developed over time. in the past, professions have been regarded as having power in themselves (barber 1963, cited in haralambos & holborn 1991) because of the specialised knowledge, which was only accessible to those within the profession. delivery of unique professional services was, therefore, ‘highly regarded in terms of society’s values’ (baber 1963 cited in haralambos & holborn 1991:67). thus, professions were not only seen as different from other occupations but were also seen as yielding power and status in society. challenging this, taylor and runté (1995) have questioned the very notion of a profession, arguing that those who cling to the idea of professions do not want to surrender their superiority. we do not agree that the idea of professions is obsolete, but do note that in some professional curricula there has been a weakening of traditional and specialised disciplinary knowledge as other related disciplinary knowledge has been integrated into programmes (for example, as business courses are introduced into medical degrees). as a result, it could be argued that professions are no longer as distinctive and autonomous as they used to be. professions can be viewed as different from other occupations because they are informed and guided by moral values and ethics (higgs-kleyn & kapelianis 1999). this resonates with winch’s (2014:58) view that the judgments made by professionals are ‘not usually just technical ones but also involve ethical and political considerations to which one’s personal and occupational values are highly relevant’. harvey and mason (1995) argue that the professional bodies are responsible for monitoring conduct and ensuring that members abide by the profession’s established ethical principles as a means for internal and external quality (harvey & mason 1995). grace (2014) disagrees, believing that the ethical and moral fibre that makes professions different from other occupations is lost in the contemporary context because of capitalism and global economic marketisation. this argument sees that the world has shifted to the commodification of professions and moral and ethical principles have been replaced by monetary value. the existence of professions within such a context has made them similar to any occupation seeking monetary value. we concede that moral conduct and ethical principles may experience degradation, but argue that the moral and ethical principles upholding the uniqueness of professions still exist. in the south african context, professional bodies still gate-keep and monitor professions for conduct and abide by ethical principles. registration with the respective professional bodies is a prerequisite for practice and we suggest that with professional bodies in control, professionals will continue to practise within a context of formalised ethical principles. professions clearly differ from one another. however, for the purpose of this article, the hei preparation of students to graduate with professional degrees has been homogenised. this is because there are common requirements for preparation across a range of professions (badza & chakuchichi 2000; mceachern & kenny 2007). hei preparation ‘to graduate into professions’ refers to professionalising students to be ready to enter into a respective profession after obtaining a professional degree. thus, we understand preparation to enter into professions as the whole process of acquisition of professional knowledge in higher learning, in order to apply it with professional expertise and professional judgement in practical contexts (most often the workplace). we now move to discuss the main obstacles and opportunities in preparation to graduate into a profession that is highlighted in the literature, having established the distinctiveness of professions and professional degrees. opportunities and obstacles in professional preparation opportunities and obstacles that students with disabilities might be confronted with, during their preparation to graduate into professions, could be similar to those that students without disabilities face. this is because preparation is standardised for all students and all students must meet the same requirements for graduation and professional registration. we show in this section that there could be additional obstacles and opportunities that are specific to students with disabilities because of their unique needs. opportunities the opportunities described below refer to structural, policy and material support that should be available to students with disabilities, and should enhance their access to and success in professional degrees. climate of transformation the post-apartheid climate of institutional transformation is a potential opportunity for students with disabilities. during apartheid, the south african schooling system was segregated according to race and disability (howell 2006). in higher learning segregation was only implemented along racial lines (howell 2005), which means that students with disabilities have never been explicitly excluded from heis. however, as howell, chalklen and alberts (2006) note, with respect to persons with disabilities, ‘… attitudes and institutional practices … have perpetuated some of the deepest inequalities and most severe forms of discrimination in our country’s history’ (p. 78). students with disabilities have experienced discrimination and exclusion effected by institutional practices that work to the benefit of students without disabilities. with disability now firmly placed on the transformation agenda (howell et al. 2006), students with disabilities are now represented on the transformation committees that south african heis have formed (doe 2008). the increased awareness of the rights of persons with disabilities, buttressed by the policies described below, should offer improved opportunities for students with disabilities to pursue professional degrees. inclusion and disability policies south africa has comprehensive and specific policies for inclusivity in education and training for employment (department of education [doe] 2001a; department of higher education and training 2013) which indicate political support for the education of learners and students with disabilities. the policies cover general, further and higher education and are concerned with addressing barriers to learning, promoting institutional access for students with disabilities, as well as planning for, and providing appropriate support up to the point of employment. these policies should enable the professionalisation of students with disabilities on two levels. firstly, the level of schooling is involved, where improved access to quality education for learners with disabilities is envisaged. this should result in improved schooling outcomes for learners with disabilities, and ultimately in their meeting the admission requirements for entry into professional degrees. secondly, the provisions of the education white paper six (doe 2001a) make reference to heis improving access and support at institutional level. the provisions of the white paper for post-school education (dhet 2013) specifically refer to heis providing training for people with disabilities to prepare them for the labour market. the inclusion of students with disabilities in higher learning is also backed by institutional disability policies. there has been an increase in institutions that have disability policies (fotim report 2011) and 21% of institutions surveyed by matshedisho (2007) were using formal policies to provide support for people with disabilities. the rhetoric of policy does not necessarily translate into practice. inclusion policies are known for their contradictory discourses (liasidou 2012), particularly as they simultaneously espouse the individual or deficit and social accounts of disability. these contradictions may account for the ‘gap’ between policy and practice (pather 2011), and may explain why policy does not always translate into opportunities for students with disabilities. support for students with disabilities there is also the opportunity of a high level of disability support. disability unit staff play an important role in providing direct and indirect support to students. direct support is usually technical and material through the provision of assistive devices, services and assistance with administrative procedures. indirect support occurs as disability unit staff train lecturers, and work collaboratively with them in teaching students with different categories of disabilities (matshedisho 2007). according to the united nations convention on the rights of persons with disabilities (united nations 2006) to which south africa is a signatory, lecturers are obliged to make ‘reasonable accommodations’ for students with disabilities. whilst there might be contestations about what constitutes ‘reasonable’, it would be expected that access arrangements would be made for assessments, that there would be adjustments to the delivery of courses, and the provision of course material in an accessible format (marshall 2008). this, of course, depends on the lecturers’ willingness to teach in ways that include students with disabilities. the opportunity of a high level of professionalisation for students with disabilities could be achieved through the coordinated support of the academics and disability unit staff in south african heis. funding funding is important for all students if they are to be successfully prepared in higher learning and to graduate into professions. in 1996, south africa introduced the national student financial aid scheme (nsfas 2013) to fund needy but capable students in higher learning (carrim & wangenge-ouma 2012). before 2008, students with disabilities had their own funding provided by the department of labour under the national skills fund (nsfas 2013), to assist them in studying professional and non-professional degrees. in 2008, the department of education introduced a special nsfas bursary specifically for students with disabilities (nsfas 2013). the bursary covers students with disabilities who were previously funded through the department of labour, and is for undergraduates studying any degree and post-graduates studying professional degrees (nsfas 2013). the nsfas bursary for students with disabilities covers the students’ tuition, accommodation, meals, transport costs, costs of material prescribed by the institution and the cost of one or more assistive devices (nsfas 2013). a particular opportunity is presented by the provision of funds to cover transport expenses. as fieldwork practice, for professional degrees in the south african context, is off campus in most instances (odendaal-magwaza & farman 1997), all students studying professional degrees have transport costs. students with disabilities enjoy the opportunity of financial support that is specifically for transportation to the field, during field practice. from the list of expenses for which the nsfas bursary makes provision, it seems that the students with disabilities should be fully financially covered to be successfully prepared to graduate into professions in south africa. obstacles we have, in describing various opportunities, hinted at the fact that these may not be sufficient in the quest for the professionalisation of students with disabilities. in the sections that follow, we discuss obstacles that students with disabilities confront first at the hei site and then in fieldwork. in so doing, we build the argument that it is in the nature of professional (as opposed to purely theoretical or purely practical) education that the obstacles for students with disabilities are compounded. obstacles at the university site students with disabilities may confront obstacles to accessing professional curricula in formerly advantaged institutions in south africa. research on transformation in these contexts has revealed that some lecturers are not willing to make changes to the curriculum to enable access for formerly disadvantaged social groups (doe 2008). this may be exacerbated by the association of disability with incapability in the south africa context of higher learning (howell 2006). we could extrapolate conclusions from this and assume that negative perceptions of the capabilities of students, with disabilities and low expectations of their academic performance, could be held by academic staff who are responsible for these students’ professionalisation. professional degrees are academically demanding (haralambos & holborn 1991) and students might choose not to disclose invisible disabilities for fear of being labelled as incapable (fuller et al. 2004; goode 2007). as a consequence, students with disabilities might not receive the support and accommodation to which they are entitled and this may impact on their ability to acquire the theoretical knowledge that is required for professional expertise. whilst support from disability units potentially enables the access and success of students with disabilities, the fotim report (2011) notes that disability units have minimal autonomy and direct communication with university management. this constrains their support for students with disabilities and indirectly leads to academic staff having a lower level of participation, negotiation and awareness regarding disability issues (lyner-cleophas et al. 2014). the white paper for post-school education and training (dhet 2013) proposed a coordinated approach that includes support from the support staff, academic staff and management. the view of lyner-cleophas et al. (2014) coordinated support as a systemic approach that could make a positive impact on the inclusion of students with disabilities in higher learning and this could improve the professionalisation of students with disabilities. however, as we explain next, policy ideals are not always realised in practice. despite comprehensive policies of inclusive education, inclusion in higher learning in south africa is problematic (carrim 2002). the exclusion of students from disadvantaged backgrounds in general and students with disabilities in particular is still being experienced in the south african context of higher learning (doe 2008). the specific policies regarding disability in higher learning in south africa are not effectively implemented and in many instances, disability policies have taken a long time to merely be approved by management structures (fotim report 2011). institutions of higher learning in south africa also do not have a specific way of monitoring the implementation of disability policies as is found in more developed countries (chataika 2007). preparation to graduate into professions might be backed by policy, but when policy is not translated into action, professionalisation in higher learning could be a far-fetched dream for students with disabilities. despite the apparent opportunity for funding students with disabilities, the reality is that the ‘nsfas is currently the only state funding body in south africa and, therefore, very few students with disabilities are able to access higher education and succeed in their studies’ (fotim report 2011:137). further research is required to understand why the funding provisions envisaged by the nsfas are not resulting in access and success in higher education for students with disabilities. mention needs to be made of the fact that by virtue of being expensive, professional degrees exclude students of low socio-economic status (le grange 2014). these degrees require more funding because of costs like clinical supervision and specialised and expensive equipment. the degree programme of architecture, for example, is the most expensive programme in higher learning, with fewer students from disadvantaged backgrounds (like black africans and people with disabilities) entering and completing this degree (le grange 2014). although there is nsfas funding specifically for students with disabilities, it might not be adequate for studying professional degrees in higher learning. none of the south african universities were originally built with the needs of students with disabilities in mind (fitchett 2015). as a result, students with disabilities who are studying professional degrees confront obstacles in accessing lecture venues (hall & belch 2000; losinsky et al. 2003). where rails and ramps are available, they are usually at the back of buildings. as a result, students with disabilities are obliged to spend extra time getting to venues and could miss lectures altogether, which could affect their academic performance. although retrofitting is being implemented in some institutions of higher learning (fitchett 2015) this is a long-term endeavour. the inaccessible environment in south african higher learning has implications beyond access to buildings. fitchett (2015) reports that a particular south african hei has started to build new structures with access for people with disabilities in mind. despite this, students with disabilities report that the new buildings are still problematic because there is too big a space between the sitting areas, the podium and the board. this suggests that the construction has not complied with specifications on spaces and sizes in principle 7 of universal design. this states that there should be appropriate size and space for use by all users despite body size, posture and mobility (centre for universal design 1997). in those big spaces, students with low vision might not see what is written on the board from where they are sitting. students with hearing impairments might not hear clearly when the lecturers teach from the podium. students who use wheelchairs are disadvantaged when tables and chairs require access from stairs. these built environment obstacles have negative implications for the professional preparation of students with disabilities, particularly as they potentially limit the students’ access to the theoretical knowledge taught at the hei site. obstacles to practical and fieldwork experience preparation to graduate into professions involves practice and experience in the field. as has been mentioned, fieldwork practice for professional degrees mostly takes place off campus at workplaces (odendaal-magwaza & farman 1997). this, then, poses obstacles for students with disabilities over and above those experienced at the hei site. students with disabilities may need the support available to them at the hei site extended to include support in fieldwork. in the british context, there is extended support by higher learning into the field (botham & nicholson 2014) but we can find no evidence that this occurs in the south african context. without extended support, students with disabilities might experience difficulties during fieldwork and this may impact negatively on their professionalisation. the first of the fieldwork obstacles is transport. most public transport in south africa remains inaccessible to persons with disabilities, especially those using wheelchairs (khuzwayo 2011). the few public transport facilities that are accessible are available in urban areas (parliamentary monitoring group 2013). additionally, fieldwork for professional degrees is not limited to urban areas. students using wheelchairs often find that there is a lack of space for their wheelchairs in public transport. also, the ‘normal’ entrance of the vehicle and the distance from the ground to the entrance of the vehicle is problematic (khuzwayo 2011). inaccessible transport to fieldwork sites, thus, has the potential of exerting a negative effect on the professionalisation of students with disabilities. once in the field, students with disabilities may find built environments that constitute further obstacles to them preparing for their professions (losinsky et al. 2003). many south african workplace environments were not originally designed with the needs of persons with disabilities in mind and swartz and schneider (2006:235) argue that ‘retro-fitting existing buildings and access routes to accommodate all south africans can be technically and aesthetically challenging, not to mention expensive’. where retro-fitting does occur, says fitchett (2015), building owners usually meet only the minimum requirements in compliance with the national building regulation of south africa. negative attitudes and assumptions of individual deficit students with disabilities are confronted with the obstacle of the reproduction of negative attitudes towards them (howell 2006). this reproduction of negative attitudes in higher learning and in the field emanates from people viewing disability in a negative light. watermeyer and swartz (2006) talk of the ‘hostile and patronising attitudes’ (p.1) that people with disabilities in south africa experience. many identity markers may lead to negative attitudes by others, but howell (2006) found that negative attitudes towards students with disabilities in south african higher learning were more pronounced, especially for those from low socio-economic backgrounds, who are sometimes referred to as ‘non-traditional’ students (doe 2001b). as negative attitudes take a long time to change, students with disabilities continue to experience negative attitudes that hinder full preparation to graduate into professions. south africa is not alone in this. other countries also report attitudinal barriers limiting the optimal functioning of students with disabilities in higher learning (chataika 2007; holloway 2001). negative attitudes combine with continued individual and deficit understandings of disability to create obstacles for students with disabilities. despite some shift in the south african heis from understanding disability within an individual model to understanding it within a social model, the individual or deficit understanding prevails (fotim report 2011). the individual model perpetuates the idea that disability is an individual problem requiring individual compensatory measures (oliver 1996). this approach sees disability as inherent in the individual, rather than socially constructed by a disabling society. the model prevents disability from being seen as oppression and is focussed on enabling functionality for individuals, rather than identifying and dismantling barriers to full access and participation. disabilities in students might be considered individual tragedies and as a result, the service provided may be seen as charity, rather than the right of students with disabilities. taken together, these negative attitudes may explain the lack of full participation of students with disabilities both in higher learning and in fieldwork. we consider perpetuation of the individual model as an obstacle that could have negative implications for the preparation of students with disabilities to graduate into professions. we have, for ease of explanation, considered the various opportunities and obstacles experienced by students with disabilities under discrete headings. this belies the compounding effect of the combined obstacles. the fact that buildings in heis and workplaces, as well as transport, remain inaccessible suggests that society continues to believe that it is the person with a disability who is responsible for arranging access to the physical environment. it is, thus, important that society becomes conscious of the barriers for persons with disabilities that are encountered in the physical environment (oliver 1996; oliver & barnes 2012). this means ensuring that physical access for people with disabilities is seen as a social issue, and not a personal problem (slee 2011). this is particularly relevant in south africa, where there is a general belief that the presence of persons with disabilities in the workplace might mean incurring extra costs to make the environment disability-friendly (marescia 2003). besides confronting the obstacles of inaccessible transport and buildings, students with disabilities are confronted with the obstacle of social discrimination (hall & belch 2000) during fieldwork and in workplaces (marescia 2003). also, their potential and capabilities may not be recognised by staff in the field (wiggert-barnard & swartz 2012). self-advocacy as a way to overcome the obstacles self-advocacy may be a way that students with disabilities could challenge the obstacles in higher learning and in the workplace during field practice. in the south african context, swart and greyling (2011) reported on a study in which students with disabilities argued that self-advocacy was the way through which they could communicate their needs and demand support to which they are entitled. for students with disabilities to effectively self-advocate in higher learning and the workplace, they need to develop personal characteristics (swart & greyling 2011) and specific skills (getzel & thoma 2008). personal characteristics like patience, friendliness, determination and agency are identified as important attributes for students with disabilities who wish to self-advocate, as they will need to negotiate and sometimes demand support (swart & greyling 2011). in addition, they need to know who they are, to believe in themselves, to know what works for each of them and to know what services should be provided (swart & greyling 2011). the skills necessary for self-advocacy include communication, problem solving and conflict resolution skills (getzel & thoma 2008). students with disabilities need not view themselves as passive subjects, waiting upon academic staff, support staff and personnel in the field to professionalise them. in developed countries such as the usa, self-advocacy has been found to lead to successful outcomes in terms of employment (test et al. 2005). the implication is that through active engagement, transformation occurs. conclusion after two decades of democracy, higher learning in south africa has made strides in providing opportunities for students studying professional degrees in general, and students with disabilities in particular. however, a number of obstacles are still experienced, specifically by students with disabilities, which result in a lack of professional skills amongst persons with disabilities in the south african context. these obstacles interact to negatively influence the professionalisation of students with disabilities. it can, therefore, be concluded that the low representation of persons with disabilities in south africa in professions can, to an extent, be explained by the obstacles they face in their preparation for professions in higher learning. addressing these obstacles is crucial. it is imperative that the individual approach to disability is deconstructed and that higher education engages with residual discriminatory and exclusionary discourses and practices. in this regard, walton, bowman and osman (2015) note about south african heis that: … support for students is often framed in terms of a compensatory discourse, based on the assumption of student disadvantage or deficit. the institution, in this discourse, is assumed to be normative, and its demands unproblematic. (p. 269) whilst there has been research on the experiences of students with disabilities in higher education, more focus is required on the specific experiences of students with disabilities who are preparing to graduate into professions. the voices of students with disabilities need to be heard in research that is designed for participation and transformation (mertens 2012). for change to occur in higher learning in favour of students with disabilities, empowerment and agency are needed. self-advocacy, as reported by swart and greyling’s (2011) study, could also make a difference. finally, it is incumbent on the schooling system to become more inclusive of learners with disabilities and to ensure that their education will give them access to higher learning to prepare for, and graduate into professions. acknowledgements competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions s.n. (university of witwatersrand & university of kwazulu-natal) contributed to this article by reviewing literature on preparation to graduate into professions in higher learning from the broader international contexts and from the south african context specifically. the reviewing of literature contributed to the understanding of the difference between preparation to graduate into employment generally and preparation to graduate into professions specifically in the context of higher learning. the process of the review also contributed to identification of obstacles and opportunities that are confronted by students with disabilities in preparation to graduate into professions in the south african context of higher learning specifically. the contributions of e.w. 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29(1), 264–271. watermeyer, b. & swartz, l., 2006, ‘introduction and overview’, in b. watermeyer, l. swartz, t. lorenzo, m. schneider & m. priestley (eds.), disability and social change: a south african agenda, pp. 1–6, hsrc, cape town. wiggert-barnard, c. & swartz, l., 2012, ‘what facilitates the entry of persons with disabilities into south african companies?’, disability and rehabilitation 34(12), 1016–1023. pmid: 22149902, http://dx.doi.org/10.3109/09638288.2011.631679 winch, c., 2014, ‘know-how and knowledge in the professional curriculum’, in m. young & j. muller (eds.), knowledge, expertise and the professions, pp. 47–60, routledge, london. abstract introduction methodology results ethical considerations discussion limitations of the study conclusion acknowledgements references about the author(s) adnil w. titus department of interdisciplinary health sciences, stellenbosch university, south africa susan hillier department of interdisciplinary health sciences, stellenbosch university, south africa sansom institute for health research, university of south australia, australia quinette a. louw department of interdisciplinary health sciences, stellenbosch university, south africa gakeemah inglis-jassiem department of interdisciplinary health sciences, stellenbosch university, south africa citation titus, a.w., hillier, s., louw, q.a. & inglis-jassiem, g., 2018, ‘an analysis of trunk kinematics and gait parameters in people with stroke’, african journal of disability 7(0), a310. https://doi.org/10.4102/ajod.v7i0.310 original research an analysis of trunk kinematics and gait parameters in people with stroke adnil w. titus, susan hillier, quinette a. louw, gakeemah inglis-jassiem received: 01 sept. 2016; accepted: 11 nov. 2017; published: 29 mar. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: approximately two out of three people with stroke experience gait problems. trunk movement control and symmetry is an important prerequisite for functional walking gait. movement control, measured objectively as kinematics during walking gait, is rarely investigated. objective: to describe the three-dimensional (3d) kinematics of the trunk during gait in people with stroke, including key spatiotemporal characteristics. methodology: a total of 17 adults with stroke who met the inclusion criteria were selected to participate in this cross-sectional pilot study. an eight-camera t-10 vicon system with nexus 1.8 software (vicon motion system limited, oxford, uk) was used to analyse the 3d kinematics of the trunk during self-selected walking speed. trunk kinematics throughout the gait cycle and spatiotemporal parameters were extracted using custom-built scripts in matlab used at the stellenbosch university movement analysis laboratory. stata version 12.1 software was used to assess differences in trunk kinematics between the affected and unaffected sides during gait using the sign test (statistical significance level p < 0.05). results: participants achieved functional gait speeds although they presented with asymmetrical trunk kinematics. during the full gait cycle, there were statistically significant differences of trunk motion between the affected and unaffected sides in the coronal plane (p < 0.001). there were statistically significant differences in the trunk kinematics between the affected side and unaffected sides at initial contact (p < 0.001) and foot off (p < 0.049) in the coronal plane as well as at initial contact (p < 0.000) and foot off (p < 0.013) in the transverse plane. conclusion: this pilot study found significant asymmetry in trunk motion between the affected and unaffected sides that varied across the gait cycle. this suggests the trunk may need to be targeted in clinical gait retraining post-stroke. introduction stroke is a major global health concern in terms of mortality and chronic disability (wissel et al. 2013). the global incidence of stroke is reported to account for approximately 5.5 million deaths annually and for 44 million disability-adjusted life-years lost (mukherjee & patil 2011). hemiparesis is seen as the most common impairment after stroke and has a direct negative influence on the ability of a person to walk (belda-lois et al. 2011). two out of three people experience persistent walking difficulties following a stroke (stanhope et al. 2014). walking difficulties in people with stroke are reported to be because of weakness (paresis) or abnormal tone of the limbs and trunk, impaired sensorimotor systems and central control mechanisms (karthikbabu et al. 2011). the post-stroke gait pattern is characterised as hemiparetic with the predominant sensorimotor impairments being experienced in the contralesional upper and lower limbs. the role of the trunk in mobility and stability is however often overlooked as an integral component of performing daily core functions such as walking after stroke (ryerson et al. 2008). the term ‘trunk’ refers to the area between the midpoint of the hip joint centres caudally and the midpoint between the shoulder joint centres cranially (de leva 1996). trunk control is an essential component of functional walking gait (carmo et al. 2012; cromwell et al. 2001; karthikbabu et al. 2011). it is defined as the ability of the muscles of the trunk to maintain an upright or neutral position, shift weight and selectively move to maintain the centre of gravity over the base of support (karthikbabu et al. 2011). the muscles of the trunk actively contribute to balance during functional activities (ceccato et al. 2009). in healthy individuals, the trunk is maintained in a relatively neutral orientation, with negligible excursions in the sagittal, coronal and transverse planes during gait (krebs et al. 1992). however, it has been reported that gait-related joint kinematics are generally different for people with hemiparesis compared to healthy people (balaban & tok 2014). earlier kinematic research placed an emphasis on the pelvis and its role in gait, and not on the trunk segments above the pelvis. for example, dodd and morris (2003) specifically assessed the lateral pelvic displacement during gait of people with hemiparesis. tyson (1999) reported on lateral translation of the trunk, but not on the remaining two planes (for rotation and flexion or extension). balaban and tok (2014) suggested that there is an increase in lateral trunk sway and elevation of the hip to allow for improved foot clearance in people with stroke. there is also an inference of rotation in that during gait the upper limb swings forward as the contralateral leg moves forward, and vice versa (hacmon et al. 2012). hacmon et al. (2012) and verheyden et al. (2006) reported that people with stroke have weaker trunk muscles compared to their peers without stroke. these authors suggested that the trunk can be seen as a predictor of achieving walking ability post stroke rehabilitation. however, there is little objective information about trunk impairments during gait post-stroke. currently there is anecdotal evidence about impaired trunk control or movement during walking gait post-stroke in individuals who had a stroke. to inform rehabilitation strategies, empirical information is needed, which has also been identified by other researchers (frigo & crenna 2009). this study aimed to provide an objective evaluation of three-dimensional (3d) trunk kinematics during gait. methodology sample in south africa, individuals with stroke are referred to the community health centres for rehabilitation on an outpatient basis once they are medically stable. seventeen participants, nine female and eight male, consented to participate in the study. five male and five female participants had right hemiparesis and three male and four female participants had left hemiparesis. all the participants were recruited from a community health centre by means of convenience sampling. the inclusion criteria to participate in the study were as follows: men and women of 18 years and older, first ever confirmed stroke, ability to follow simple instructions and the ability to walk 10 m without assistive devices. people with bilateral signs, orthopaedic or other neurological pathologies that influence gait and any known allergies to the adhesive tape used during testing procedures were excluded. the mean age of the participants was 56.3 ± 9.5 (range 30–67 years), with the age at incidence being 51.8 ± 9.8 (range 27–67 years); mean time since stroke was 21 ± 18.0 months (range 2–51 months); and mean body mass index (bmi) for the group was 25.66 ± 4.24 (range 17.10–33.52). setting the study was conducted at the 3d movement analysis laboratory of stellenbosch university, which uses an eight-camera t-10 vicon system (vicon motion system ltd, oxford, uk) with nexus 1.8 software. the associated vicon plug-in-gait (pig) model was used to capture the 3d motion of the participants during walking at a self-selected comfortable speed. procedure twenty-two retroreflective markers (14 mm diameter) were placed on participants’ bony landmarks according to the pig model (lower limb markers were placed on the anterior and posterior superior iliac spines, lateral knee, lateral malleolus, second metatarsal head, heel, lateral thigh and tibia). the vicon motion analysis system is regarded as the gold standard in 3d movement analysis because of its good reliability and validity (mcginley et al. 2009). the pig model offers a standardised procedure for the identification and placement of 22 body markers. anthropometric measurements, including height, weight, leg length and knee and ankle width, were taken by an experienced laboratory technician. the pig model defines the trunk in three dimensions using cardan angles. the z-axis points downwards (longitudinal axis) and is perpendicular to the transverse plane, calculated from the midpoint between cervical spinous process 7 (c7) and the sternal notch (clav) to the midpoint of thoracic spinous process 10 (t10) and xiphoid process of the sternum (strn). the x-axis points forward (sagittal axis) and is calculated from the midpoint between c7 and t10 to the midpoint between clav and strn; it is perpendicular to the coronal plane. the y-axis (coronal or transverse axis) points right, perpendicular to the x and z axes, and runs perpendicular to the sagittal plane (vicon 2010). anterior and posterior movement of the trunk (sagittal plane) refers to the trunk rotating latero-laterally, resulting in the anterior and posterior movements (flexion and extension) or tilting (struyf et al. 2011). in the coronal plane during gait, ceccato et al. (2009) describe the lateral movement (obliquity) of the trunk as a sideways curvature to the last swinging leg, assuming that this leg is now in the stance phase. trunk rotation (transverse plane) is antiphase to the motion of the pelvis (bruijn et al. 2008). system calibration was performed as per the standard vicon guidelines (vicon 2010). individual calibration was performed for each participant before they commenced walking using a static pose trial. participants were instructed to walk at a self-selected, comfortable speed along a 10 m distance of an even 30 m surface in the laboratory setting for a total of six trials, wearing the shoes they wore on the day of data capturing. the participants were allowed two practice trials. an average of all the shod trials was analysed and described in this paper. a stool was placed at either end of the walkway length for participants to rest if needed. data processing preliminary marker reconstruction and labelling were performed using standard vicon nexus operations. gap filling was performed using the standard woltring filter supplied by vicon. specific points during the gait cycle were calculated, in degrees, using marker trajectories that correlated with gait phases. trunk kinematics in the three different planes and spatiotemporal parameters were analysed in matlab (mathworks, natick, ma) using custom-built scripts. statistical analysis descriptive statistics were calculated for spatiotemporal gait parameters and for trunk kinematics with mean and standard deviations in the three different planes. the mean and standard deviations of the kinematics were produced. stata software was used to calculate the differences between the two sides (affected and unaffected) using the sign test (statistical significance level p < 0.05). results spatiotemporal gait parameters table 1 summarises the averages of the spatiotemporal parameters including walking speed, cadence, step length, stride length, step time and stride time. table 1: mean and standard deviation group spatiotemporal parameters. trunk kinematics there was minimal trunk motion noted in the sagittal plane during the full gait cycle. the trunk largely remained anterior to neutral on both the affected (mean 4.28°, sd 0.87°) and unaffected sides (mean 4.33°, sd 0.90°). figure 1 depicts a comparison between the affected and unaffected sides in degrees, with the red line representing the affected and the blue line depicting the unaffected side. figure 1: trunk kinematics in the sagittal plane affected versus unaffected. at initial contact, the trunk on the unaffected side was more anteriorly positioned (5.33°) than the affected side (3.56°), but this difference was not statistically significant. at foot off, there was a second difference noted with the affected side slightly more forward (1.77°). this finding reached statistical significance (table 2). table 2: mean (standard deviation) peak trunk angle during the full gait cycle, in the sagittal, coronal and transverse planes as well as at initial contact and foot off. figure 2 illustrates the trunk kinematics in the coronal plane. the trunk remained fairly central throughout the gait cycle, although on the affected side it tended to move downwards (mean −2.17°, sd 1.88°), in contrast to the unaffected side (mean 2.25°, sd 1.93°). figure 2: trunk kinematics in the coronal plane affected versus unaffected. at initial contact on the affected side, the trunk moved in a downward direction (mean −2.01°, sd 2.41°). in contrast, at initial contact on the unaffected side, the trunk tended to move upwards (mean 2.45°, sd 3.19°). at foot off on the affected side, the trunk was almost stationary, whereas on the unaffected side it moved upwards (mean 4.82°, sd 1.35°). in this plane, the trunk remained in a slightly backward rotated position during the full gait cycle (mean −3.54°, sd 2.49°) on the affected side, and obviously in a slightly forward rotated position (mean 3.60°, sd 2.61°) on the less affected side (figure 3). figure 3: trunk kinematics in the transverse plane affected versus unaffected. at initial contact on the affected side, the trunk rotated 6.63° (sd 6.78°) backwards as opposed to a fairly centrally positioned trunk on the unaffected side (mean 0.66°, sd 6.16°), indicating a statistically significant difference (p < 0.001). at foot off, the difference was also statistically significant, with the trunk rotated backwards (mean −2.45°, sd 2.00°) on the affected side and forward on the unaffected side (mean 4.86°, sd 1.57°). ethical considerations ethical approval was granted by the human research ethics committee (hrec) of stellenbosch university (reference number: s13/03/056) in july 2013 to conduct this observational descriptive study. discussion this study aimed to characterise key aspects of trunk motion during the full gait cycle of people with stroke using 3d kinematics for both the affected and unaffected sides. the secondary aims of the study included reporting of the spatiotemporal gait parameters of the sample. the sample presented with characteristics commonly seen in the gait patterns of people with stroke, namely reduced cadence and walking speed (shumway-cook & woollacott 2012). on average, 5 of the 17 participants in this study walked at ‘limited’ community speed (0.63 m/s) and the remaining 12 at community speed (1.03 m/s) (schmid et al. 2007). hemiparetic individuals tend to take shorter and wider steps at a slower gait speed compared to normal individuals (hacmon et al. 2012). the participants in this study had a mean cadence of 101.63 steps per minute (sd 16.21) compared to 112.5 steps per minute for normal gait in adults (shumway-cook & woollacott 2012). trunk kinematics overall the trunk did not move through a large range of motion in the sagittal plane (anterior–posterior motion) and would be observed clinically as the trunk being held relatively still in a more anterior or forward tilted posture. although some extension occurred, this movement never crossed neutrality (0° into extension). normally there is not a large amplitude of movement, although there are clear flexion peaks at double support (i.e. initial contact) and extension peak at single support (i.e. midstance) (krebs et al. 1992). the relatively rigid trunk position of this sample could be a compensatory attempt to maintain proximal stability, while the forward tilted position of the trunk may be used to aid forward propulsion by moving the centre of gravity forward. there was a statistically significant difference between the motion of the trunk during the stride of the affected and unaffected sides at foot off. however, this marginal difference could potentially have been attributed to measurement error, although the vicon has demonstrated high accuracy and reliability (ehara et al. 1995). it has been shown to have less than a 1.5° error (richards 1999). normally the trunk moves side to side in the gait cycle (coronal plane) and aligns over each leg during its stance phase. this might be because of the need for support of the trunk during unilateral stance. it has been reported that the trunk moves towards the weight-bearing leg in normal gait at initial contact and then away from that side at terminal stance (krebs et al. 1992; whittle 2007). however, in our study, there was significant coronal asymmetry between the affected and unaffected sides during the full gait cycle, at initial contact, and at foot off, with the trunk moving downwards during stride of the affected side and upwards during stride of the unaffected side. this may be attributed to an altered strategy of the trunk to lengthen to support balance as the person commences and completes swing on the affected side, or a collapse of trunk stability during stance on the affected side. during normal gait there is a forward swing of the pelvis on the side of the swinging leg, with either a counter-rotation of the trunk or the contralateral arm swinging forward leading to thoracic rotation (lamoth et al. 2002). with an increase in walking speed, these reciprocal thoracic and pelvic rotations become more antiphase. however, in our study, mean trunk position during the gait cycle was slightly more forward than that of the pelvis. this infers that the participants were not accessing symmetrical counter-rotation and is supported by the clinical observation of a backward rotated trunk on the affected side. reducing gait asymmetry has been a goal as well as a measurement of success in gait re-education for people with stroke (olney & richards 1996). however, to date no relationship has been found between asymmetry and functional measures (e.g. gait speed) (dodd & morris 2003). using the symmetry index described by patterson et al. (2008), we found that the participants in our study did not exhibit spatiotemporal asymmetry and were all classified as limited or community walkers (schmid et al. 2007). however, they presented with asymmetrical trunk kinematics. balaban and tok (2014) reported that while the normalisation of gait asymmetry is a common goal in post-stroke rehabilitation, this asymmetry may be an adaptation or compensation mechanism that allows the person to walk; therefore, symmetry should not be the goal of rehabilitation during the chronic phase after stroke. griffin, phdz and mcbride (1995) suggested that aiming for symmetry in a stable body system (chronic stage of stroke) is not likely to have optimal performance as a consequence because an increase in the contribution of the affected side leads to asymmetry. they linked an increase in speed to optimal performance; however, an increase in speed in people with stroke will most likely lead to asymmetry. it is understandable to see asymmetry in a person with limbs having unequal capabilities (griffin et al. 1995). it remains to be determined what the clinical and functional significance of truncal asymmetry actually is. anecdotally, people with stroke wish to appear ‘normal’ and normal is viewed in a lay sense as symmetrical. limitations of the study the sample of this study were recruited from one setting, were a mixture of subacute and chronic, had received differing levels of rehabilitation experience and were all able to walk without the use of assistive devices. therefore, the results of this study should not be generalised to the wider population of people with stroke and those with different or varying levels of function. this report focuses on the group data only, with an indication of individual variation provided by the standard deviations. it may be that with the expected heterogeneity in a stroke population, further individual analysis would yield more clinically meaningful information. finally, the laboratory setting may have influenced the participants’ gait pattern as this does not emulate their natural environment. clinical implications in this study, trunk motion in people with stroke differed from that expected during normal gait. this took the form of reduced general motion with a tendency to lean forward, to the side and to rotate backwards on the affected side. these characteristics arguably reduce efficiency or increase energy (patterson et al. 2010) and therefore require amelioration. however, this objective is not yet supported by evidence. until such evidence appears, we would recommend that in the interests of patient-centred care if gait asymmetry is of concern to the people with stroke themselves, then it should be a goal in rehabilitation. recommendations for future research this study was a pilot study and provides preliminary quantified evidence that the trunk has asymmetric motion during gait after stroke in all three planes. further investigation in a larger sample is required to determine if the trends noted can be replicated. a larger cohort will allow for subgroup analysis, such as determining the impact of the site and severity of lesion, different age groups, time since incident, comorbidities, varying functional levels, gender and bmi. the relationship between spatiotemporal parameters, trunk kinematics (asymmetries) and functional levels should be explored further. conclusion the aim of this study was to describe the kinematics of the trunk during gait of people with stroke. in summary, we found that the trunk remained relatively still during gait, but with significant asymmetries between the affected and unaffected sides. the participants were all functional walkers at a community level, yet still exhibited this asymmetry. it may be that rehabilitation needs to target the trunk as well as the limbs in hemiparetic gait. acknowledgements this article is based on the thesis of adnil w. titus, ‘an investigation into the trunk kinematics of people with stroke during gait’, which was presented to the faculty of medicine and health sciences at stellenbosch university in fulfilment of the degree of master of science in physiotherapy. the authors would like to thank the harry crossly foundation for financial support, dr s.j. cockroft for his assistance with data collection and analysis, and all the participants for their active participation in the study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors were part of the original project team and drafted this article. all authors contributed to, read and approved the final version of the article. references balaban, b. & tok, f., 2014, ‘gait disturbances in patients with stroke’, pm & r: the journal of injury, function, and rehabilitation 6(7), 635–642. https://doi.org/10.1016/j.pmrj.2013.12.017 belda-lois, j.-m., mena-del 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affiliation: 1department of social work, college of behavioral sciences, university of northern iowa, united states of america correspondence to: augustina naami email: augustina.naami@uni.edu postal address: department of social work, sabin 255, university of northern iowa, cedar falls, ia 50614–0405, united states of america dates: received: 19 oct. 2013 accepted: 19 nov. 2014 published: 03 june 2015 how to cite this article: naami, a., 2015, ‘disability, gender, and employment relationships in africa: the case of ghana’, african journal of disability 4(1), art. #95, 11 pages. http://dx.doi.org/10.4102/ajod.v4i1.95 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. disability, gender, and employment relationships in africa: the case of ghana in this original research... open access • abstract • introduction and literature review    •       • study purpose and objectives • methods and materials    • procedure    • measurement    • data analysis • results    • unemployment    • employment    • income    • support • discussion • recommendations and conclusion • acknowledgements    • competing interests • references abstract top ↑ the exploratory quantitative study sought to develop an understanding about the relationships among disability, gender and employment in northern ghana. a total of 110 individuals with disabilities (20–60 years) from various disability groups participated in the study. the results indicate that many persons with disabilities are unemployed, the majority being women. discrimination is cited as the greatest barrier to the employment of persons with disabilities, particularly women. the majority of persons with disabilities, typically women, live in poverty; given that some are unemployed and those who are employed worked mostly in marginal, seasonal and menial jobs. persons with disabilities also experience several challenges on the job, including negative perceptions about their capabilities, discrimination and exclusion, irrespective of the employment sector and disability type. educational interventions such as workshops, documenting and showcasing success stories of persons with disabilities could be helpful to reduce negative perceptions about their capabilities as well as discrimination against them. government intervention to support persons with disabilities with start-up capital and funding for formal education is also recommended as these two elements were identified respectively as barriers to self-employment and employment in the public/private sectors. government interventions to create educational opportunities for persons with disabilities are essential given that lower educational attainment affect their employment. introduction and literature review top ↑ employment related disparities persist in both develop and developing countries. women, in general, are less valued in the labour market, as shown by inequality in participation in the labour force, pay, the kind of jobs they have, and the positions they hold. several global employment studies (azmat, guell & manning 2006; hausmann, tyson & zahidi 2013; united nations 2013a, 2013b, 2013c; united nations economic commission for europe [unece] 2008) have converging findings regarding gender employment related disparities. in 2012, the united nations reported that the percentage of adult women in the labour force is lower than their male counterparts in all the united nations’ countries. the report emphasises consistency in the global gender employment gap over several different years. for example, between 2002 and 2007, female unempolyment rates remained 5.8%, 0.5% points higher than their male counterparts (5.3%). it is worth mentioning that women from africa, asia and latin america experienced higher uemploymment rates (united nations 2013b). the 2012 report further notes the widening global gender employment gap. studies also emphasise the persistency of the gender pay gap. available statistics indicate that the current global average gender pay gap (which is the difference in earning between men and women) is hovering around 17% (united nations 2013c). there is also evidence that women are underrepresented in official and managerial positions, whilst they are overrepresented as sales, clerical, and service workers. the unece in 2008 found that europe and north america has a clear majority of men among legislators, managers and senior officials, except for the united states and lithuania, where the proportion of women among legislators, managers, and senior officials was rather high (54% and 47% respectively). also, various united nations reports highlight the overrepresentation of women in the service sectors in both developed and developing countries (united nations 2013a, 2013b, 2013c). many other women are in vulnerable employment; working for family or self (united nations 2013a). vulnerable employment is characterised by working mostly in temporal, low paying marginal or underemployment, seasonal and menial jobs. they also lack job benefits such as social security and health insurance. the average global vulnerable employment gender gap is estimated at 2.3%, with a larger share of women in vulnerable employment (50.4%) compared to men (48.1%). the vulnerable employment gap reported for sub-saharan africa (of which ghana is a part) was rather high, estimated at 15%. similar gender employment disparities persist in ghana. although available statistics (ghana statistical service (2006) show that males’ employment rate (54.9%) is just slightly higher than that of females (53.4%), women are more likely to engage in vulnerable employment (females [71.3%], males [37.9%]), and less likely to work in paid employment, given that the proportion of males in paid employment is much higher (25.0%), compared to that of females (8.2%). furthermore, there is inequality in the pay men and women receive. men receive higher earnings (61 ghana pesewas [gp]) than females (50 gp). the average hourly earnings are 55gp (1.96 ghana cedis [ghc] = us$1 in 2012). educational levels are also higher among men (67%) than women (46%) (food and agricultural organisation [fao] 2012). parallel to the precceding discussions, global employment disparities exist between persons with and those without disabilities. in their study, which gives a snapshot of economic and poverty situation of persons with disabilities of working age in 15 developing countries, mitra, posarac & vick (2011) charted several pathways relating disability to poverty. they conclude that persons with disabilities, compared with persons without disabilities, are more likely to have lower educational attainment, experience lower employment rates, have lower wages when employed, and are more likely to be poor. they however, note that the intensity of the association of disability and poverty depends on contextual factors including individual, family, community, and country. a global disability employment gap is evident in several other studies. employment rates for individuals with disabilities are lower than those without disabilities (dhungana 2006; groce et al. 2013; heymann, stein & moreno 2013; mitra 2006; mitra & sambamoorthi 2008, 2009; mizunoya & mitra 2012; ozawa & yeo 2006; world health organization report on disability 2011). the result of the world health organization survey on disability report for 51 countries shows employment rates of 52.8% for men with disabilities and 19.6% for women with disabilities, while that for men and women without disabilities were respectively 64.9% and 29.9%. also, mizunoya and mitra, whose study covered 15 developing countries, including ghana, investigated disability gaps in employment rates. they found that persons with disabilities have lower employment rates than persons without disabilities in 12 out of the 15 countries. they also found that persons with disabilities are more likely to work in the informal sector compared to their counterparts without disabilities. their study showed a significant difference between workers with disabilities who are self-employed and their counterparts without disabilities in nine out of the 15 countries. other researches indicate that persons without disabilities earn significantly more than those with disabilities (heymann et al. 2013; kaye 2009; mitra & sambamoorthi 2008, 2009; ozawa & yeo 2006; world health organization report on disability 2011). for example, a study of 27 industrialized countries by mcmahon et al. (2005) showed an average earning gap of 15%. again, persons with disabilities who are employed mostly work in entry-level positions that do not utilise much of their skills. they also have difficulties climbing the corporate ladder to work in managerial and official positions (barisin, benjak & vuletic 2011; kaye 2009). disability and gender interact to create multiple disadvantages for women with disabilities compared with men with disabilities as a result of sexism and disabilism, discrimination against women and persons with disabilities respectively. various studies (with different mesasures in both high, middle and low income countries) have converging results indicating higher disability prevelence among women with disabilities of working age compared to their male counterparts (mitra & sambamoorthi 2014; mitra et al. 2011; mizunoya & mitra 2012; world health organization report on disability 2011). mitra & sambamoorth whose research sought to estimate disability prevalence among adults in 54 countries globally, found that women in all age groups in all the countries studied have higher disability prevalence than men. mistra et al. (2011) found similar results from their study of 15 developing countries. and, as in the scenario of the general gender employment disparity discussed previously, women with disabilities are not only less likely to be employed (dhungana 2006; randolph & anderson 2004; smith 2007), they also are more likely to receive lower pay (ozawa & yeo 2006) and are underrepresented in official and managerial positions, while they are overrepresented as sales, clerical, and service workers (jans & stoddard 1999; smith 2007). in developing countries the employment situation could be worse for both men and women with disabilities due to lower educational levels (mitra et. al. 2011; mizunoya & mitra 2012; world health organization report on disability 2011), cultural beliefs and practices, negative perceptions about their capabilities (naami 2014; naami & liese 2012), physical barriers and inaccessible transportation (heymann et al. 2013; naami 2014; tijm, cornielje & edusei 2011). for women with disabilities, it could even be more complicated as a result of the intersection of disability and gender. however, there is dearth of literature to estimate the scope and trend of the employment situation of persons with disabilities, especially in ghana where there is virtually no data about disability in national surveys. the few studies that exist demonstrate a disability employment gap in developing countries (mitra et al. 2011; mizunoya & mitra 2012). sintef studies of living conditions among people with disabilities in seven southern african coutries, led by arne henning eide, indicate the prevelence of disability and gender employment disaprities in all these countries except zimbabwe (eide 2013). this difference, however, reflects only formal employment. but, as discussed previously, persons with disabilities are more likely to work in the informal sector. studies by both mitra et al. (2011) and mizunoya & mitra 2012 indicate a disability employment gap in the case of ghana. mizunoya & mitra further demonstrate a gender employment gap, though not statistically significant. however, there is dearth of literature to estimate the scope and trend of the employment situation of persons with with disabilities in ghana. this research fills that gap. it is noteworthy that ghana made a landmark commitment to promote the rights of persons with disabilities when it ratified the convention on the rights of persons with disabilities (crpd) in august of 2012. the crpd is an international convention with 50 articles addressing various aspects of disability rights including non-discrimination, equality of opportunity, accessibility, respect for inherent dignity, full and effective participation, and inclusion as well as rights for women and children with disabilities. the treaty seeks to: … promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities , and to promote respect for their inherent dignity. (united nations 2006:4) ghana has yet to adapt its policies to reflect the treaty in order to benefit persons with disabilities. study purpose and objectives the exploratory quantitative study sought to develop an understanding of the employment situation of persons with disabilities in northern ghana and to make recommendations for the government and other stakeholders in disabilities about ways to advance their employment. specifically, the study sought to determine: which persons with disabilities are employed, what they do, the income they earn, and the nature of their work environment. which persons with disabilities are unemployed, barriers to their unemployment and how they provide for themselves and their families, given that social protection programs are virtually non-existent in ghana. gender differences in the variables identified, and recommendations to improve on the employment of persons with disabilities. methods and materials top ↑ the study used an exploratory descriptive quantitative design. the study design is imperative, since not much research is done in this area. the emphasis of the exploratory aspect of this design is to gain new insights, ideas and increase knowledge of all aspects of the social phenomenon (brink & wood 1998). the descriptive feature describes the frequencies at which the various variables occurred and how they vary to help our understanding of the phenomenon. one hundred and ten (110) persons with disabilities of working age from the three regional capitals of the northern sector of ghana; tamale, wa, and bolga participated in the study. procedure participants were recruited from the resources centers for persons with disabilities, establishments that oversee the various organizations of persons with disabilities in the regions: namely ghana national association of the blind, ghana national association of the deaf and the ghana society of the physically disabled. leaders of the disability movements generated lists of eligible members from existing records. from their lists, members were contacted by phone to volunteer to participate in the study. the volunteers were given adequate information about the study and were told that participation was completely voluntary. all study participants signed consent forms before the face-to-face interviews. the consent form was translated in the local language to enable those participants who felt more comfortable to express themselves in the local language to have the opportunity to do so. both sign and local language interpretations were also provided for individuals with hearing disabilities and for those participants who would rather do the interview in the local language. the interviews lasted approximately 30 minutes each. participants were given approximately seven ghc each (approximately $us5 at the time of the study) for participating in the study. two research assistants were trained to assist in the data collection. the institutional review board of the author’s institution approved this study. measurement the questionnaire was particularly designed for this study and had 45 questions in all. literature about the various employment issues was searched for concepts that needed to be measured, which were included in the questionnaire. while some questions were closed-ended and a few likert-type questions, the majority of the questions were open-ended questions soliciting detailed information about certain variables which were later recoded for descriptive and other statistical analysis. the questionnaire had three major sections: demographic information, employment, and income or support. the demographic information section comprised of variables such as age, gender, marital status, disability type, and educational levels, and contained nine questions in all. the section on employment addressed issues about both employment and unemployment of persons with disabilities. issues such as the types of jobs persons with disabilities do, the nature of their work environment, challenges they encounter at work, and their recommendations to improve on their employment were also addressed. those who were unemployed were asked about barriers to their employment and their recommendations for support to find jobs. there were 26 questions in this section. the final section solicited information about participants’ income and the kinds and quality of support they receive as well as their present needs, 10 questions in all. data analysis statistical package for social sciences (spss) version 15.0 was used for the data analysis. descriptive statistics and several other statistical tests (mann-whitey u, kruskal-wallis, and chi-square tests) were used in the data analysis. the chi-square test for independence was vital to analyse the categorical variables (e.g. length of unemployment/sex, education levels/sex, education/employment, sex/barriers to employment, sex/income). to compare the difference between three groups (e.g. disability groups, study locations and employment sectors), the kruskall-wallis test was the appropriate statistical test. and the mann-whitney u test compared the difference between men and women on variables such as income. since the majority of the questions were open-ended, they were first recoded for descriptive and other statistical analysis. for example, categories of length of unemployment, income, support, barriers to employment, problems experience on the job were all developed from the open-ended questions. the researcher and research assistants separately recoded the variables, then compared and reviewed results to arrive at variables included in the analysis. non-parametric statistics were used in the data analysis, since the sample has non-probability. results top ↑ the four emerging themes based on the literature and data are: (1) unemployment, (2) employment, (3) income, and (4) support. gender and disability differences are also reported under each theme as much as possible. unemployment this section describes persons with disabilities who were unemployed, barriers to their employment and their recommendations to find jobs. unemployment in this paper refers to those who have no jobs but have been looking for jobs in the government, private and self-employment sectors irrespective of the length of job search. although self-employment is part of the private sector, it is differentiated in this study for clearer discussion. the private sector refers to persons with disabilities working for other people and organizations other than for themselves. the study outcome shows that about a quarter 27 (24.8%) of the respondents were unemployed. unemployment rates were higher for women with disabilities 16 (59.3%) than for men with disabilities 11 (40.7%), but relatively the same for the three interview location: bolga (9; 34.6%), tamale (9; 34.6%) and wa (8; 30.8%). however, more individuals with visual disabilities (11; 40.3%) were unemployed compared with those with hearing disabilities (11; 33.3%) and those with physical disabilities (7; 26%). the length of unemployment ranged between 1 and 20 years, with an average of 2.21 years, sd = 1.179. as seen in table 1, almost half (10; 41.7%) of those without jobs have been unemployed between 6 and 10 years plus. an additional 5 (20.8%) have been unemployed for over 20 years. a chi-square test for independence was conducted to assess the statistical difference between men and women on the categories of lengths of unemployment (1–5 years; 6–10 years; 10 years and above; and 20 years and above). the result of the test was significant, x2 (3, n = 24) = 9.5, p = .023, which means there was a difference in proportion between men and women on categories of length of unemployment. a follow-up test revealed that the proportion of women with disabilities on the 1–5 years category of length of unemployment significantly differ from the proportion of men, while that of men on the category of 10 years plus differ significantly from the women. however, there was no difference on category of length of unemployment for the various disability types. table 1: length of unemployment by sex (n = 24 females 13 and males 11). respondents who were unemployed were asked to indicate if they had difficulties finding jobs. all of them answered in the affirmative. they mostly identified discrimination, inadequate start-up capital and skills as barriers to their employment. however, discrimination, which is defined in this study as the unfair treatment of those with disabilities as a result of their impairment, was cited as the key barrier to their employment. as seen in the cross tabulation in table 2, although a few more females experienced discrimination and the other barriers than their male counterparts, the result was not statistically significant. skills in this context refer to vocational or technical training. table 2: barriers to employment by sex (n = 26 females 15 and males 11). it is noteworthy that formal education did not significantly (x2 (6, n = 110) = 6.89, p = .33) affect the employment of persons with disabilities in this study, given that the majority had technical/vocational education as indicated in table 3. however, educational levels were significantly x2 (6, n = 110) = 12.6, p <.05 higher among male than female participants. to address their employment needs, the participants recommended further education and awareness creation about their capabilities for employment in the government sector, and start-up capital, stores and public education against discrimination for self-employment. table 3: level of education by sex (n = 110 females 60 and males 50). employment the employment section describes persons with disabilities who were employed, where they worked, the kinds of jobs they did, and the nature of their work environment. three out of 4 of the respondents (83; 75.2%) said they were employed. however, more than half (52; 64.2%) of them were self-employed; working mostly in marginal, seasonal and menial jobs. surprisingly, more females (44; 53.7%) than males (39; 46.3%) pointed out that they were employed. but the women (32; 72.7%) dominate the self-employment sector compared to the men (20; 51.1%). the results also indicate that many individuals with physical disabilities (30; 57.7%), compared with people with visual disabilities (13; 25%) and those with hearing difficulties (9; 17.3%) were self-employed. furthermore, about one-quarter (21; 25.9%) of those who indicated they work worked for the government. the majority of this population was teachers (15; 71%). many men with disabilities (9; 35.1%) worked in this sector than women (6; 18.2%). also, more people with visual disabilities (12; 57.1%), compared to those with physical disabilities (6; 28.6%) and people with hearing disabilities (3; 14.3%) were hired by the government. the private sector, which employed (8; 9.9%) of the respondents, hired more people with hearing disabilities (5; 71.4%) than those with physical disabilities (2; 28.6%), but not individuals with visual disabilities. (table 4) table 4: employment sector by sex (n = 81 females 44 and males 37). regarding problems experienced at work, respondents employed in all three sectors (private, government and self-employment) identified negative perceptions about their capabilities and exclusion. the self-employed further identified inadequate funding for their businesses, delayed and/or no payment for services, lack of stores for their businesses, and marketing difficulties, while those in the government and private sectors pointed out the lack of accommodation on the job. to address these problems, respondents recommended further education, accommodation at work (such as assistive technology), accessible environment, funding for small businesses, marking their products and public education about their capabilities. participants who were employed were asked if they had ever received training on the job. over half (15; 65.2%) of those working in the government sector reported having received in-service training for skills upgrade. but twice as many males with disabilities as females received training, as indicated in table 5. on the other hand, approximately onethird (8; 34.8%) said they had never received training. again, they were asked to indicate if they had ever been promoted. more than half (10; 55.6%) answered in the negative. some individuals, however, answered in the affirmative (8; 44.4%). the majority (5; 41.7%) of these individuals is men with disabilities compared to women (3; 37.5%). table 5: training and promotion of workers in the government sector by sex (%). regarding job satisfaction, a kruskal-wallis test indicates that the self-employed were happier and more satisfied with their jobs than those working in the government and public sectors. the test was significant, x2 (2, n = 81) = 13.1, p = .001. almost all the self-employed 94.9% (45; 5 missing cases) strongly agreed or agreed to the statement ‘i am proud and happy to be self-employed’, whilst only 23 (72.4%) of those working in private and government sectors strongly agreed or agreed to a similar statement ‘i am proud and happy to work for this organization’. however, just two (4.3%) of the self-employed disagreed to the same statement ‘i am proud and happy to be self-employed’ whilst 8 (27.6%) of those working in the private and government sectors strongly disagreed or disagreed to a similar statement ‘i am proud and happy to work for this organization’. income what income do persons with disabilities who work receive and from what sources? how do the unemployed provide for themselves and their families, given that social protection programs are virtually non-existent in ghana? this section addresses these issues. see tables 6–8 for the results of participants’ income. table 6: respondents monthly income by sex (n = 105 females 58 and males 47). table 7: respondents monthly income by sector (%) (n = 81 g 21, p 8 and s 52). table 8: respondents sources of income by sex (n = 105 females 58 and males 47). participants’ monthly income ranged between 2–1100 ghana cedis (approximately us$1–561usd), mean income is ghc 1.47 per day (which is less than us$1, sd = 1.119). the majority (84; 80%) of the respondents earned just a little over us$1 (us$1.36, the minimum daily income reported in this study). an additional 10 (9.5%) earned us$3.4 daily. it is therefore not surprising that almost all the participants 106 (96.4%) emphasised that their income was not enough to provide for their basic necessities, with only 5 (3.6%) responding to the contrary. as indicated in table 6, almost all the female respondents (n = 51 out of 60) and everyone who is self-employed (see table 7) earned the minimum study income (us$1.36), compared with men (n = 33 out of 50). men with disabilities earned significantly higher income than women with disabilities. the mann-whitney u test, which compared the difference in their income was significant, z = –2.66, p = .008. this is expected, given that more than half of the women who were employed worked for themselves. only a few of the individuals working in the government (5; 8.1%) and private (5; 8.1%) sectors earned the minimum income. the minimum study income, however, is relatively distributed among respondents in all three study locations; with just a few more persons with disabilities (30; 36.2%) from tamale earning that income compared to the other two study locations, bolga (27; 32.5%) and wa (26; 31.3%). there is a similar trend of income distribution among the disability types, with slightly more individuals with physical disabilities (30; 35.7%) earning this income compared to those with hearing (29; 34.6%) and visual disabilities (25; 29.7%). the kruskal-wallis test, which compared the income in the three study locations and the disability types, shows that the difference was not statistically significant. additionally, there was a significant difference in the income that participants working in the government and private sectors and the self-employed earned. the kruskal-wallis test was significant, x2 (2, n = 81) = 48.75, p = .000. a three-way mann-whitney u was conducted as follow-up test between the three groups. the results of all three the tests, between government and private sectors (z = –2.191, p = .036), government sector and self-employed (z = –7.011, p = .000), and private sector and self-employed (z = –3.64, p = .000) were significant. participants working in the government sector earned more income than those in the private sector and the self-employed. also, those working in the private sector earned more income than those who were self-employed. a few respondents (7; 6.7%) were in the highest monthly income bracket of the study (ghc 401–1100). and virtually everyone earning this income is a male with a disability (6; 85.7%) who worked in the government sector, except one. this person worked in the private sector and, she was the only female of the study who earned that income. it is noteworthy that none of those who earned the highest study income was self-employed. asked about their current sources of income, respondents indicated by working for the government, private sector, self-employment and from family and friends as well as begging. six declined to answer this question. the majority (13; 86.7%) of those who indicated their source of income was their family or friends were unemployed, but (2; 13.3%) were employed. among those who indicated they begged for a living, the majority (8; 88.9%) were individuals with visual disabilities, one was an individual with a physical disability, but none had hearing disabilities. also, over three-quarters (7; 77.8%) of those who begged indicated they were unemployed, but about a quarter (2; 22.2%) said they were employed. support respondents reported having received financial and non-financial (e.g. food, housing, clothing, and emotional) support from various sources, including the family, friends, non-governmental organizations, churches, mosques and the government both in the past and the present. see tables 9–10 for more details. table 9: sources of past support by sex (%) (n = 97 females 53 and males 44). table 10: sources of present support by sex (n = 73 females 41 and males 33). however, many respondents (98; 90.6%) said they received more support in the past compared to the present (73; 74.5%). in both periods, respondents indicated that their families were their main source of support. they noted that they received from their families basic needs such as food, shelter, clothing and personal assistance to complete errands. the percentage of participants receiving this support dropped [past 51.5%; present 48.6%]. government support was the second highest form of support in the past, but that also drastically dropped from 24.7% to 2.7%. an interesting pattern is that support from friends, mostly, non-monetary (personal assistance to complete errands and moral support) more than doubled the past year’s (past [14.4%]; present [32.4%]). current support from churches (1.4%) and ngos (1.4%) was very minimal. another fascinating result is that more women with disabilities than men received support in both eras but this was not statistically significant. asked to rate the quality of the current support they received, respondents highly rated government support as very good or good (64.7%) than other sources of support, ngos (60%), family (57.7%), churches (50%) and friends (47.1). respondents support needs were identified as: (1) government (for skills training, start-up capital for small businesses, and accommodation on the job, further education, education for their children, and marketing products); (2) family and friends (social support, personal assistance, financial/in-kind support for basic needs); (3) churches (social support, support for children’s education, financial/in-kind support for basic needs); and (4) ngos (start-up capital/skills training, support for children’s education, financial/in-kind support for basic needs). respondents were asked to indicate which of their support need is most important. over half (65.5%) mentioned government support compared with ngos (12.4%), family (9.5%), friends (3.8%), and (2.9%) each for churches and mosques. participants believed that government support as indicated above will give them the independence they so much desire. discussion top ↑ this exploratory study establishes relationship among disability, gender and employment. compared to their male counterparts, the results indicate that women with disabilities have higher unemployment rates, validating studies that women with disabilities are less likely to be employed (dhungana 2006; randolph & anderson 2004; smith 2007). however, the study outcomes also demonstrate that women with disabilities have shorter lengths of unemployment than men. this is because, as discussed elsewhere in this paper, women are more likely than men to engage in vulnerable employment, working in marginal and seasonal jobs (e.g. selling few groceries on a table, making and selling cooked food, selling smaller bags of produce – usually at home or in front of the house). although not statistically significant, women with disabilities experience more of the barriers to the employment of persons with disabilities identified in this study than their male counterparts: (1) discrimination, (2) lack of start-up capital and (3) inadequate skills. it is important to note that discrimination was the key barrier to the employment of persons with disabilities in this study. discrimination is basically due to preconceptions about their capabilities, supporting other studies (heymann et al. 2013; mizunoya & mitra 2012; world health organization report on disability 2011). interestingly, contrary to the sintef and other studies (mitra et al. 2011; mizunoya & mitra 2012; world health organization report on disability 2011), neither inadequate skills nor formal education significantly impact the employment of persons with disabilities in this study. the majority of study participants (including those who have no formal education) already had vocational or technical training and could be self-employed. but, they need money to rent places, buy equipment and materials to start and grow their businesses. hence, start-up capital (an important element to self-employment) remains another important obstacle for the employment of persons with disabilities. this finding is consistent with the world health organization report on disability (2011:247–248) and the study by heymann et al. (2014). the world health organization report on disability also indicates that women with disabilities are particularly disadvantaged to start-up capital due to the lack of collateral security, which is a requirement of many banks for loans. accordingly, study participants recommended start-up capital as crucial for self-employment. for employment in all sectors (public, private and self-employment), public education about the capabilities of persons with disabilities and the need to end discriminatory practices against them are essential. although formal education did not appear to be a barrier to the employment of persons with disabilities in this study, they nevertheless recommended improvement in their educational status for employment in both the private and public sectors, which is consistent with the world health organization report on disability (2011). it is worthy to mention that over a third of the respondents had either no formal education (16; 24.5%) or elementary/junior high education (20; 18.2%) and only a few (8; 7.3%) had undergraduate education. however, it is notable that the educational levels of males with disabilities were significantly higher than their female counterparts, confirming reports by the food and agricultural organisation (fao 2012) regarding literacy rates; women (46%) and men (67%) in the general ghanaian population. findings also indicate that more than half of persons with disabilities who are employed work for themselves, a phenomenon the united nations describes as vulnerable employment (united nations 2013a). vulnerable employment is characterised by low income, lack of job security and lack of job-related benefits. this finding is consistent with groce et al.’ s (2013) result about the employment of persons with disabilities in nine developing countries. women with disabilities dominate the self-employment sector compared to their male counterparts. the vulnerable employment gender gap for this study is rather large (18.6%) compared to the world average (2.3%) and estimates for the sub-saharan africa (15%), (united nations 2013a), but smaller than the ghana national average (33.4%) (ghana statistical service 2006). this finding is consistent with mizunoya & mitra’s results (2012) which indicate that 9 out of the 15 countries investigated showed significant employment differences between persons with disabilities who are self-employment and their counterparts with no disabilities. women with disabilities in this study mostly worked in traditional women’s jobs such as dressmaking, weaving, hairdressing, and petty trading (e.g. selling few groceries on a table usually at home or in front of the house, selling cooked food, smaller bags of produce), thus participating in both the production and service sectors. but, compared to their male counterparts, the women are overrepresented in the production sector; making doormats, baskets, kente clothes and clothing. the results, on the other hand, suggest that men with disabilities dominate the public and private sectors, working mostly in the service industry as teachers. thus, this study suggests that in ghana, men with disabilities, rather than women, are overrepresented in the service sector contrary to the literature, but both men and women with disabilities are underrepresented in official and managerial positions. the study further demonstrates that in ghana there is a trend in the kinds of jobs individuals with various types of disability do. those with physical disabilities are more likely to work for themselves, while people with visual disabilities teach in the schools for people with visual disabilities and as craft instructors in regular schools. individuals with hearing disabilities are more likely to teach in the schools for people with hearing disabilities, but they also work in the private sector, mostly in jobs that require more physical efforts than verbal communication. this is due to the lack of accommodation of specifically sign language interpretation. a further key finding is that the government is the major employer of persons with disabilities, other than those who are self-employed, but they all work in the education sector as teachers. the study also reveals that persons with disabilities who worked received training on the job to upgrade their skills. however, twice as many men received training compared to women, validating studies that gender and disability interact to create unequal opportunities for men and women with disabilities (emmett & alant 2006; smith 2007). not many get promoted, confirming studies that persons with disabilities who are employed mostly have difficulties climbing the organizational ladder to work in higher level positions (barisin et al. 2011; kaye 2009), about twice as many men with disabilities compared to women get promoted. persons with disabilities who work experience problems at work, irrespective of their sex, disability type and employment sector. these challenges include negative perceptions about their capabilities, discrimination and exclusion. for instance, respondents from the private and government sectors reported experiencing pay discrimination and verbal abuse. others said they felt they were not involved in the decision-making process. yet, others indicated lack of accommodation on the job, also consistent with the world health organization report on disability (2011). for example, the people with visual disabilities said they do not get brailed textbooks and required software to effectively do their work. they sometimes purchase the essential materials or rely on friends and family to read or dictate the textbooks to them. another instance of desired accommodation regards changes in working hours for those who need it, especially the women. employers are usually concerned about the cost of providing accommodation for persons with disabilities. however, the job accommodation network of the office of disability services of the united states of america’s department of labor found that, contrary to employers’ fear of high cost of providing accommodation, benefits (such as ‘retaining valuable employees, improving productivity and morale, reducing workers’ compensation and training costs, and improving company diversity’) far outweighs cost (job accommodation network 2014:3). in some cases, accommodation cost almost nothing. on the whole, the self-employed were happier and more satisfied with their jobs than those who worked in the public and private sectors. this is because they make their own decisions, especially regarding when to go to work and the number of hours to work, but not necessary the income they earned, because they earned significantly less than those who worked in both the government and private sectors. this finding supports the results from pagan’s study (2009) which examined the use of self-employment among people with disabilities in 13 european countries. she found that persons with disabilities are not only more likely to be self-employment, but also, self-employment provides flexible working hours, higher levels of job satisfaction than those persons with disabilities who are wage and salary earners. although the majority of the participants indicated they were working, study outcome suggests that most of them lived in poverty, given that the average income per day is less than us$1 (ghc 1.47) and the majority (84; 80%) earn income demonstrated to be just on the poverty threshold set by the world bank. the daily poverty threshold is estimated at us$1.25 and the minimum daily income reported in this study is equivalent to us$1.36. this finding is consistent with the literature indicating that persons with disabilities are more likely to be poor, especially in developing countries (appiagyei 2006; kassah 2008; mitra et al. 2011; naami & liese 2012; world health organization 2011). a study by mitra et al. (2011), shows significant association of disability and multidimensional poverty in about 14 of the 15 developing countries investigated. it is important to note that study participants had an average of two children (sd = 1.748). the results show that many women with disabilities (42; 58.3%) have given birth to many children compared with men (30; 41.7%) and since the majority of the study participants could not provide for their basic needs, they depended on their families. this finding is expected because of ghanaian’s belief in the supporting role of the extended family system. family members, irrespective of disability status, depend on the family system in times of crises. however, studies show that poverty and negative perceptions about disability impact on the familial support persons with disabilities receive (naami & liese 2011). also, the study by mitra et al. (2011) suggests that in ghana, households with disabilities generally experience lower levels of economic well-being. it is therefore not surprising that respondents rated other sources of support, especially government, higher than familial support. the majority (68.6%) also cited government support, specifically government support in the form of assistance for skills training, start-up capital for small businesses, accommodation on the job (examples are assistive technology), further education and marketing their products, rather than family support, as their most important support need, because they believed that this form of support is more reliable and could help them gain the independence they have been looking for. in the absence of jobs and social protection, which according to the world disability on report is just 1%–2% of the gross domestic product of developing countries, as well as inadequate social support (which is crucial for survival), many unemployed individuals with disabilities beg for survival. this finding is consistent with studies suggesting that persons with disabilities in ghana are compelled to beg on the streets due to their exclusion from the labour market (appiagyei 2006; kassah 2008). from this study, almost all those who beg for a living are individuals with visual disabilities. a few were individuals with physical disabilities, but none had hearing disability. surprisingly, none of the beggars saw begging as a job contrary to other studies (groce et al. 2013). women with disabilities are overrepresented among those earning the minimum daily income reported in this study (us$1.36), which is demonstrated to be on the poverty threshold, validating studies indicating that women with disabilities are more likely to be poor compared to men with disabilities (dhungana 2006; mitra 2006). also, males with disabilities earn significantly higher incomes than their female counterparts, validating the world health organization report on disability (2011) and ozawa & yeo (2006). poverty among persons with disabilities is relatively distributed in the three study locations. the proportion of poor persons with disabilities in the northern region is slightly higher, (although not statistically significant) compared to the other two regions (upper east and west). this finding is also not surprising, as the northern region is classified as the poorest region in the country (ghana statistical service 2008). recommendations and conclusion top ↑ this study, like every other study, has limitations. the results cannot be generalised to the entire population of persons with disabilities in the northern sector of ghana, and in ghana as a whole, due to use of non-probability sampling method. the sampling method used, recruiting participants from the disability movements and specific towns might have introduced selection bias to the study. the sample may not represent the population of persons with disabilities in the northern sector. additionally, poverty estimates in this study might have been underestimated due to participants’ affiliation to the disabilities movement. this connection might have probably positioned them to be better-off than the typical person with a disability in northern ghana. these limitations notwithstanding, the following recommendations could advance the employment of persons with disabilities. as study participants suggested, public education about their capabilities and the need to end discriminatory practices are crucial for their employment, job security and tenure. persons with disabilities in ghana continue to experience underemployment and unemployment. discrimination is cited as the major impediment to the employment of persons with disabilities as well as a challenge for those who work. this recommendation also supports provision in article 18 of the un convention on the rights of persons with disabilities (crpd) 2006). educational interventions such as workshops and discussions to demystify the public’s perceptions about disability, documenting and showcasing success stories of persons with disabilities could be helpful in reducing and/or eliminating negative perceptions about the capabilities of persons with disabilities and discrimination against them. more emphasis should be given to women and girls with disabilities, as they are more marginalized due to sexism and disabilism. these interventions should target individuals and organizations that could use their platforms to continue to raise awareness about disability issues after the trainings and discussions are over. examples are faith-based organizations, teachers, traditional leaders, employers, the media, the traditional institution, and civil society organizations. the government of ghana should find better ways to disburse and monitor the implementation of the district assembly common fund (dacf) as recommended by social enterprise development ghana (send-gh), a civil society organization in ghana. in 2005, the government gave a directive instructing all district assemblies (local governments) to allocate up to 5% of their shares of the common fund for persons with disabilities (republic of ghana 2009). however, in its quest to support the development of persons with disabilities, the government in 2007 added a ‘ring fencing’ clause to the guidelines for the utilization of the dacf. part i, guideline #6 of the dacf states that, ‘[t]wo percent (2%) shall be utilized to support initiatives by the physically challenged in the district’ (republic of ghana 2009). nevertheless, a research by send-gh (andoh 2014) indicates that the district assemblies sometimes borrow from the dacf and do not repay into the fund. this impacts on access of persons with disabilities to the fund. the dacf could be a better source of start-up capital for persons with disabilities, given that the lack of it was identified as an impediment to self-employment. it could also be a source of funding for the self-employed to grow and maintain their businesses, since they are less likely to access other sources of funding due to the lack of collateral security (which is a requirement of financial institutions) as well as discrimination. additionally, specific guidelines delineating detailed activities (e.g., starting, maintain, growing small businesses, and further education) eligible for funding under the dacf is recommended. the government could give directives, as in the case of the dacf, to the microfinance and small loans center to allocate a certain percentage of its funding to persons with disabilities. this regulation may minimize funding inequity for persons with disabilities. the microfinance and small loans center is a government organization dedicated to giving microfinance services targeted at reducing poverty and creating jobs and wealth. microfinance is an important tool for poverty reduction and given that many study participants live in poverty, specifically targeting them in the allocation of microfinance credit could reduce their poverty. more attention should be paid to women and girls with disabilities since they suffer poverty the most. the government must also implement measures to promote equality in the recruitment, training, tenure, promotion and other working conditions of persons with disabilities. it is also important to ensure inclusive and accessible work environment including reasonable accommodation. these are provisions clearly outlined in the crpd article 27 well as article 5 of the crpd which obliges states to promote equality and eliminate discrimination based on disability. however, just like the case of tunisia’s disability legislation as cited in lord et al. (2012), ghana’s disability legislation is also unclear about what reasonable accommodation is. hence the need to amend the policy document to include this provision. although formal education did not appear to be a barrier to the employment of persons with disabilities in this study, participants suggested the need for the government to create educational opportunities for them. this recommendation is consistent with the world report on disability (2011). this suggestion is also important given that over a third of the respondents had either no formal education 16 (24.5%) or just elementary/junior high education 20 (18.2%) and only a few 8 (7.3%) had undergraduate education. currently, the persons with disability act 715 (government of ghana 2006b) makes provisions for free education of persons with disabilities but it is silent about the levels of education covered under this law (basic?, high school? or college levels?). it is imperative that the state adhere to the provisions made in article 24 of the crpd which requires states to provide free access to education for persons with disabilities at all levels without discrimination on the basis of disability. ghana is bound by all provisions in this document as the state ratified this convention in july 2012. the government must also provide reasonable accommodations at all levels as required by each individual and the failure to do so will amount to discrimination which contravenes this provision. this also means training and employing teachers who are qualified to effectively include individuals with disabilities in the education system. for examples, teachers who can ‘facilitate the learning of braille, alternative script, augmentation and alternative modes, means and format of communication and orientation and mobility skills …’ as stated in article 24(3a) of the crpd. more attention should be given to girls and women with disability to ensure they also enjoy these provisions because they are more likely to experience multiple discrimination, as noted in article 6 of the crpd. the educational environment must be free of physical barriers which could impact the educational outcome of persons with disabilities. the need to fix ramps and elevators to buildings as well as sidewalks, curb cuts and zebra crossings cannot be overemphasized. also, as accessible transportation is more likely an important element for positive educational outcome, the government must make conscious efforts to ensure that the transportation system in ghana is accessible for persons with disabilities. these recommendations build on article 9a of the crpd which requires buildings, roads, transportation, housing, schools and other facilities made accessible for persons with disabilities. the government should develop welfare policies and programs for the children of persons with disabilities. this is necessary, as over half of the participants have children they cannot provide for due to their poverty situation. such programs are more likely to advance on the health, educational outcomes and overall well-being of the children of persons with disabilities and of persons with disabilities as a whole. there is also a need for the government to develop measures to collect data about persons with disabilities as indicated in article 31 of the crpd. lack of information about disability, which is the current situation, impact appropriate policies and programs that could benefit persons with disabilities. disagregated data is recommended to effectively address issues specific to the disability groups. for future research, there is a need to collect data that is nationally representative of persons with and those without disabilities and research to comparing these two populations to better understand the relationships among disability, gender and employment. acknowledgements top ↑ i am most grateful to the college of social and behavioral sciences, the department of social work, and provost of office (pre-tenure summer fellowship award) all from the university of northern iowa, for supporting this research. competing interests the author declares that that she has no financial or personal relationship(s) that may have inappropriately influenced her in writing this article. references top ↑ andoh, d., 2014, ‘district assemblies mismanaging funds for persons with disability – report’, daily graphic, viewed 14 september 2014, from http://graphic.com.gh/news/generalnews/22657-district-assemblies-mismanaging-funds-for-persons-with-disabilityreport.html appiagyei, c., 2006, street begging by persons with disabilities: a case study of accra and kumasi metropolis, ghana society of the physically disabled, accra, ghana. azmat, g., guell, m. & manning, a., 2006, ‘gender gaps in unemployment rates in oecd countries’, journal of labor economics 24(1), 1–37. http://dx.doi.org/10.1086/497817 barisin, a., benjak, t.m. & vuletic, g., 2011, ‘health-related quality of life of women with disabilities 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http://unstats.un.org/unsd/demographic/products/worldswomen/ww_full%20report_color.pdf united nations economic commission for europe, 2008, unece trends in europe and north america 2005, united nations economic commission for europe, geneva. world health organization, 2011, world report on disability, viewed 27 june 2014, from http://www.who.int/disabilities/world_report/2011/report.pdf abstract introduction history of the concept of disability and the creation of disabled identities disability under the lens of derrida’s deconstructive hierarchy of binaries disability through the optic of bitso-lebe-ke seromo arguing for ‘differently abled’ as an alternative to disability conclusion acknowledgements references footnote about the author(s) paul l. leshota department of theology and religious studies, national university of lesotho, maseru, lesotho maximus m. sefotho department of educational psychology, university of johannesburg, johannesburg, south africa citation leshota, p.l. & sefotho, m.m., 2020, ‘being differently abled: disability through the lens of hierarchy of binaries and bitso-lebe-ke seromo’, african journal of disability 9(0), a643. https://doi.org/10.4102/ajod.v9i0.643 original research being differently abled: disability through the lens of hierarchy of binaries and bitso-lebe-ke seromo paul l. leshota, maximus m. sefotho received: 24 apr. 2019; accepted: 29 nov. 2019; published: 25 feb. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite its acceptability, the term disability has not been able to shirk the sense of incompleteness, lack, deprivation and incapacitation embodied in the prefix ‘dis-’. the current wave of anti-discrimination on disability issues, calls for constant re-examination of the language and the appellations we use in respect of people with disabilities. objectives: the aim of this study is to subject the term disability to some relevancy litmus test with a view to prevent it from acquiring lyotard’s ‘grand narrative’ and to propose and argue for the term ‘differently abled’ because of its transformative and anti-discriminatory slant. method: the study took the form of a literature review using the optic of derrida’s hierarchy of binaries and the sesotho proverb, ‘bitso-lebe-ke seromo’, (a bad name is ominous) to explore the connotations of the term disability as a disenfranchising social construct. results: read through the lens of derrida’s idea of difference, disability as a concept has no inherent meaning and its meaning derives from its being differentiated from other concepts. viewed through the lens of bitso-lebe-ke seromo and read in the context of its deep symbolical significance, the term disability holds immense spiritual power. conclusion: the study concludes that the term disability or disabled is exclusionary, stigmatizing, and anti-transformational. as such it embodies imperfection, incapacitation and inferiority. not only is it ominous, it places upon people with disability the perpetual mark of unattractiveness. against this background the term differently abled seems to convey more empowering overtones than the term disability. keywords: being differently abled; disability; hierarchy of binaries; bitso-lebe-ke seromo; naming; identity formation. introduction a great deal has been written about the vital role that language plays in identity formation within the framework of culture (corker 1999; galvin 2003; sheer & groce 1988; wittgenstein 1994; wright 1960). language has been seen as more than just an instrument of communication to convey ideas between people. language, in some cultures, has served to shape people’s behaviours (wittgenstein 1994), while in other cultures it has been perceived as having a causal effect, that is, to bring about what it signifies. naming as an aspect of language has also been a subject of intense debate, especially in the creation of identity (mulhausler & harre 1990; swain & cameron 1999; woodward 1997). the shared belief of the above voices is that the process of naming creates a subject whose sense of self is connected with the society’s definition (galvin 2003:152). in this way, individuals are recruited into identifying with labels and identities created not by them but by society. to the question, ‘what’s in the name?’ asked by galvin (2003:153), the answer might be, ‘there is power in a name’. naming or labelling, as lynch (2016:208) observed, is more than just an identity marker. it is a political act with the power to include and exclude (barnes 1992:8). by means of naming, which is a linguistic device, one is subjected to someone else by control and dependence. the force of that power and control is given meaning by the culture within which that naming, as a linguistic device, takes place (leshota 2011:119). because naming is not only a value-free exercise but also a connoting act which shapes perceptions, individuals and groups of people have had to bear with appellations that shaped their perceptions about themselves and others in negative and disempowering ways (lynch 2016:208). in the process, negative and enduring stereotypes as well as undesirable identities were created about such people. it is in this context that terms such as ‘cripple’, ‘invalid’, ‘spastic’ and ‘freaks’ were used with respect to people with disabilities (pwds). while these appellations may have been appropriate for their time, the treatment of the people so named was a reflection of what society thought about them. they were the property of the political hegemony that could be displayed for entertainment purposes because of what was perceived to be their unusual physical appearance. their association with such stigmatising images ascribed some characteristics that functioned to delegitimise them (lynch 2016:208). with time, such appellations were challenged as inappropriate because they were found to conjure intensely negative images and representations (galvin 2003:157). to date, the term pwds has been accepted within movements of people with disabilities across the globe as the most fitting and appropriate referent. our contention is that with the passage of time, everything needs to be subjected to some relevancy litmus test to save it from acquiring the status of lyotard’s ‘grand narrative’. we, therefore, are spurred by what slee and allan (2001:180–181) called ‘scholarly and cultural vigilantism’ in our effort to look for how things could be improved particularly because disability, as obosi (2010:12) observed, is an area where language is subject to debate and change. this article uses derrida’s philosophical notion of deconstruction under its aspect of hierarchy of binaries, with its implied centres, to tease out the usage of the term ‘disability’ and look at how it might uphold meanings it intends to flush out. it further uses the optic of the sesotho proverb, bitso-lebe-ke seromo – read within its own sesotho world view – to explore the cultural connotations of the term ‘disability’ as a disenfranchising social construct and encourage adoption of the phrase differently abled as an alternative to disability. the deployment of the above can provide valuable lenses in interrogating the identification of people through their disability, as setting them apart, distinguishing and separating them, thus removing them from the centre, which has a tendency to exclude, marginalise, vilify and disempower (powell 1997:21). history of the concept of disability and the creation of disabled identities perceptions towards those that are different in general and pwd in particular have varied from time to time and from one culture to another (munyi 2012). both culture and history connived, through language, practice and ritual, to construct perceptions and therefore meanings around bodies that were considered different and abnormal. society, with its worldview and not biology, therefore, determined the acceptability of bodies and what meanings they should inhere. wendell (1996) opined that disability is socially constructed in varied ways ranging from social conditions, physical functioning, to subtle cultural factors that have, for years, determined what qualified as normal and therefore acceptable and what qualified as abnormal and was therefore excluded. throughout the years, attitudes fuelled by perceptions, reinforced through language and practice, have never remained static. the greco-roman culture has consistently idealised bodily perfection. garland (1995), stiker (1999) and later davies (2000) and rose (2013) have focussed on the development of the concept of disability in history, particularly its derivation from greco-roman culture. although there are varied nuances in their conclusions, they seem to agree that disability as a social construct deriving from the biological category of impairment was present in the greek and roman cultures. names and appellations attributed to people, who were considered physically unable to meet the standards as determined by society, were not lacking. words such as monstrum, mutus, debilitas, infirmus, invalidus and deformis are quite common in roman literature to represent pwds. while monstrum has nuances of a subhuman with the possibility of abandonment in the case of a child, other words imply weakness, inability, feebleness, ugliness, deformity and debility. in ancient greek, the term αδυνατος did mean something akin to disabled. to such people were accorded pity and charity. they were further exempted from military service and politics. the greeks and the romans placed great value on competition, war and sport, and their bodies had to be such that they could participate successfully in all these activities (garland 1995:14). physical and intellectual fitness were esteemed features in both world views, as they ensured triumph and conquest in any form of competition (barnes 1997:13). similarly, the ancient israelites, like the greeks and the romans, and other societies attributed meanings to bodies and the criteria under which they would be judged as normal, natural, perfect and whole. they espoused a regulatory body, which is a body against which all other bodies were measured. according to douglas (1966:115), such a body served as a microcosm of a social body. it therefore exposed the society’s deepest convictions and values on everything else including the body. all of this depended entirely on the societal reckoning of what should constitute an acceptable body. according to the ancient israelites, the body was perfect and therefore clean, or it was imperfect and therefore unclean if it did or did not meet certain physical or aesthetic conditions. a perfect body had to meet the criteria of wholeness, maleness and godlike features. these features defined membership and belonging within the hierarchical structure (malina 1981:122). the jewish tradition, alive in the hebrew bible and mentality – on the whole – attributed impairment to divine ordination resulting from sin of people or their parents on the basis of the principle of corporate personality. such persons whose identity was associated with blindness, lameness, mutilated face, excessive limbs, injured hand, hunched back, dwarfism, itching disease, scabs and crushed testicles were considered defective. the above conditions constituted incompleteness and impurity, which were seen as an affront to god who was holy and without blemish (lv 21:8). the torah forbids people to serve god under the condition of tameh (pollution). there are, however, some hebrew bible texts that portray disability in a positive light. leviticus 19:14 has the tone of an anti-discrimination law, protecting, as it were, the deaf and the blind from harassment. with jesus’ coming on the stage, people with all forms of maladies and disabilities became the focus of his ministry. jesus’ healings were occasions for not only physical healing but also an opportunity for the sequestered to be reintegrated into society. while the names may have remained the same, the attitude towards people with bodies that did not meet the standards of a regulatory body was greatly challenged by jesus’ disruptive position. as stiker (1999) observed: [i]n going out to those who were under the interdiction (lepers, the blind, prostitutes, etc) or in letting them come to him, he was performing less a social act than an act to deconstruct the religious mentality. (p. 33) under the new dispensation, it is not anymore about ritual purity but about a pure heart. throughout the history of the western christian tradition, disability and disabled people have continued ‘to surface as that which must be assimilated or made to disappear’ (stiker 1999:xi). the individualisation and medicalisation of the body and the mind led to the further exclusion of pwds and their confinement into institutions. the eugenic ideals that led to the systematic extermination of pwds in the nazi camps, under the pretexts of achieving a ‘utopian society’, came as no surprise. this negative perception notwithstanding, an upsurge of christian charities continued to exist alongside the former and influenced society’s perception of disability in different ways. it was in the 19th century that different coinages and appellations around the realities of disability were designed in keeping with the social and human rights trends of the time. while these coinages may have been accepted in certain sections of society, the debates on how best to arrive at appellations that are contextually germane while being globally appealing are raging on. taking cue from these debates, we are adding our voice to the debate. disability under the lens of derrida’s deconstructive hierarchy of binaries one of derrida’s contributions to the post-modern and post-structuralist paradigms was his coining of the term ‘deconstruction’. while post-structuralism posits that meanings carried by words are not fixed but always temporary (burr 2003:53), and that such meanings are dependent on words as used in the context of time and place, deconstruction, from derrida’s perspective, is described as a ‘way of reading that concerns itself with decentering – with unmasking the problematic nature of all centres’ (powell 1997:21). this stance was a reaction to the influence of western metaphysics, which saw the world as founded on a centre. that centre was viewed as an ideal form and a fixed point around which meaning is generated. disability as a concept has no inherent meaning. its intended meaning derives from derive from its comparison with and differentiation from other concepts. because language, working through concepts, is founded on relation, the meaning of concepts is dependent on their being elements in a system of differences (powell 1997:21). disability’s meaning therefore depends on its relation to its opposite in the system of differences. it is the opposite of abled or able-bodied. not only is disability the opposite of able-bodied, but the latter is more privileged than the former. according to redman (2000:12), the notion of able-bodied is ‘constantly haunted by the liminal presence of the disabled others against which it defines itself and into which it continually threatens to collapse’. the taken-for-granted assumptions about disability’s meanings collapse in the face of their refusal to remain linguistically stable (galvin 2003). derrida’s notion of deconstruction allows for the questioning of these taken-for-granted assumptions and renders their subversion possible. history bears testimony to the fact that the disabled body has, throughout the years, been subjected to a variety of socially generated interpretations. almost all of these interpretations and meanings were founded on the hierarchy of binaries with their implied power relations. the meanings around these binary opposites should be subjected to scrutiny, and deconstruction affords us the scope and the means. in this relationship of abled versus disabled, in the system of binaries, not only are the terms opposed, but one, abled in our case, is always privileged over disabled, evoking as it were, relation of dominance. as such, it occupies the centre and thereby generates meaning that marginalises disabled or any category that falls outside the purview of the centre. not only does able-bodiedness occupy the centre, it also functions as a fixed regulator and a measure of all the other bodies (leshota 2011:54–55). disabled bodies have, throughout history, been found wanting. they were identified as the embodiment of sin and sinfulness, as the incarnation of tragedy by the moral and the medical models, respectively. the notion of disabled bodies makes sense, therefore, within the ‘othering’ discourse that sets up a division between normal and abnormal. within such a discourse, able-bodiedness becomes the normal, the perfect, the desired and that which must be maintained at all costs. disability, on the contrary, represents the abnormal, imperfect, in its physical and moral sense, which is sustained by the desire to flee from itself towards the norm and the perfect. until such a desire is fulfilled, disability cannot rest, and it will forever remain the ‘other’ that must disappear (stiker 1999:xii). not only does the term ‘disability’ carry this abnormalisation and ‘othering’ connotations, it further imposes on the named demeaning and stigmatising associations. within religious contexts, they constitute, for the most part, a group that is seen as sinful and unwhole, and therefore in need of healing and redemption (leshota 2011:144). one person with disability, i had met in one of my errands, had these words to share: ‘i have since stopped going to church because i still feel treated like an outsider’. this experience resonates with similar other experiences, where although other pwds have not left the church, they still feel the church could do better in its treatment of pwds (njoroge 2001:7). within developmental contexts, in spite of the many commendable efforts made, in the form of policies, conventions, laws and commitments, employment opportunities for pwds in developing countries are often almost non-existent. consequently, many pwds have to beg for a living, whereas, in actual fact, ‘employment is the only way out of lifelong exclusion’ (okola 2011:147). within educational contexts, in spite of the unesco efa flagship and the major strides made in awareness raising which led to change of attitude, pedagogical processes and built environment are still not disability-friendly. this has resulted in the fact that very few learners with disabilities in africa go past primary school (miles & ahuja 2007). with no education and skills to negotiate the competitive economic environment, pwds are not empowered to fight poverty. within the health systems, most pwds in developing countries still have no access to medical and rehabilitation services (who 2007). in lesotho, and possibly in many other resource-constrained countries, where even access to bare nursing services takes months to happen, provision of sign language interpreters for patients with hearing and speech impairments or braille facilities for patients with visual impairments would be a luxury. access to justice still has a long way to go in terms of reasonably accommodating pwds into the justice system (larson 2014). while there is some encouraging progress in some countries, there are equally varied challenges for some countries to bring to fruition commitments made with respect to access to justice for pwds. challenges range from training of personnel, policies and laws, attitudes, infrastructure to legal systems themselves. in lesotho, for example, the justice sector is still steeped in the rehabilitation and deficit model of disability, which views pwd as lacking in something that must be restored before they can be resettled into society (constitution of lesotho 1993). both in principle and practice, pwds have been declared incapable of participating in issues of justice that concern them. courts still rely heavily on testimony by eyewitnesses and so people with visual impairment are as a result sidelined by the justice system. while it may not be inferred that negative treatment results directly from the use of the term ‘disability’ on pwds, as in the cause–effect relationship, it cannot be at the same time ignored that the term ‘disability’ evokes very negative associations that have had far-reaching implications for its referent, persons with disabilities and their welfare. the long history of marginalisation for pwds has only proven to us that new models and attitudes take years to develop distinct and liberating contours (bosch 1991). in spite of the many years since jesus’ rapture of the preceding mentality against pwds and the church’s compassionate attitude against pwds throughout the years, the church is yet to make a break from the old mentality and embrace jesus’ liberating praxis. society, too, has not fared any better. there are as many good stories as there are sad stories to tell with respect to pwds (retief & letšosa 2018). disability’s location within the framework of the hierarchy of binary opposites renders it suspect and therefore wanting in terms of fairly representing positive and constructive meanings for pwds. as dunne (2009:48) suggested, it upholds meanings it intends to flush out. on the basis of the above consideration, we strongly argue for its replacement. disability through the optic of bitso-lebe-ke seromo although quite a very complex category, scholars have agreed that culture is a collective experience of people who happen to inhabit the same world view (lartey 2003:31). it expresses itself through language, ritual and practice. within this experience are embodied wisdom, values, beliefs and practices of how people who inhabit and share the same worldview ought to live. it functions to provide order and give meaning to people’s behaviour and interactions. although something of its past always remains, culture will forever remain dynamic, adaptable and therefore subject to reinterpretation. disability is a culturally mediated category. its meanings and connotations are determined by the norms of the culture within which it exists. culture shapes us into who we are, and we, in turn, construct culture. language plays an important role in the understanding of ourselves as a culture. language and culture are inseparable. in fact as mphande (2006:105) puts it, ‘language is part of culture’. lotman (1978:211) concurs and further states, ‘no language can exist unless it is steeped in the context of culture; and no culture can exist which does not have at its centre, the structure of natural language’. agyekum (2006:211) called it an exit valve through which people’s beliefs and thoughts, and cognition and experiences are articulated. it serves not only for communication and sharing of ideas; it goes further to shape as well as to guide the experiences of those who use it. one linguistic device that has been in use among african communities, who relied mostly on oral culture, is the proverb. a proverb is not simply a tool to advance and enhance good communication; it is also regarded as a deep symbol within culture that reveals the world view of the people. one proverb, in popular use among the basotho of lesotho, is lebitso lebe-ke seromo. literally translated: ‘a bad name is ominous’. what this proverb reveals about the african world view in general and that of the basotho in particular is that a name is more than just a social identifier. it serves to represent reality and through it reality is known. as a sign, it points towards the individual who is signified by the name within the linguistic structures and patterns provided by culture. over and above its identification and differentiation roles, the name also holds an immense spiritual power to ‘reflect and indexicalise the lives and behaviour of people either positively or negatively’ (agyekum 2006:231). it carries the very being of a person. in the context of what students of cultural anthropology and sociology of religion call presentational symbolism, a name has an inherent ability not only to point towards what the name signifies but also to generate or bring about what the name signifies (hubbeling 2009). because a name carries such an immense power, and for that matter the soul of a person, it could determine a person’s destiny. a good name spelt a bright future and in the same vein a bad name, except if it is given for preventative1 or survival reasons (agyekum 2006:231), was a bad omen to the child. it is in this sense that a name could be considered to be ominous. it was within this context that sorceries or witchcraft practices could be effected on people by the mere use of a name, without the owner’s presence. the term bokooa (disability) and its cognate sekooa (person with disability) is, in sesotho lexicons, defined in terms of boholofali (impairment), bokulane (illness) and boqhoala (permanent incapacitation) (pitso 1997:56). the word has connotations of paralysis and complete dependence. bokooa as a term seems to predate the era of the disability movement. its use as a generic term for all forms of disabilities in sesotho is quite recent. it is an attempt to match western categorisation, which creates, through surveys, projects, public systems and policies, the disabled as a social category (ingstad & whyte 1995). historically, the basotho had specific terms and conceptual categories for persons who had this or the other perceived difficulty or problem. even people who, although normal by today’s disability standards, were not responsive to society’s usual expectations were regarded as abnormal (guma 1971:53). these were generally people with mental, moral and physical defects (leshota 2011:98). bokooa has all the signs of something undesirable, dreaded and wished away in society. for example, a sesotho proverb, monna o pata sehlotsa (literally a man hides his limp), is suggestive of the fact that a limp (physical impairment) is a weakness that has to be hidden. it ought to be hidden because it reveals physical unwholeness and deformity, which were dreaded and abhorred in society. if disability is so much disliked and dreaded in society, no member would wish it upon any one member of the family. it is becoming common these days to hear people using bokooa to refer to irrationality, incongruity, senselessness and absurdity. people would refer to someone’s argument as having bokooa to mean it is absurd. for one, therefore, to want to give a name or keep on calling a name that is so unattractive and which represents something that society so dreads is calling upon oneself something one would not be able to live with. to keep on calling such a name is within the context of sesotho world view an invitation of a misfortune or omen. bokooa is considered a bad name which carries negative and derogatory overtones used to demean and undermine other people. arguing for ‘differently abled’ as an alternative to disability what we have been able to discover through the analysis above is that a body is a social construct and that its understanding depends on socially generated interpretations. society through language and its use continues to construct people, especially those perceived to have a lack or a disability. what has emerged from the discussion above is that the word disability is a negation of ability. as jones (1996:347) opined, it is construed in an ‘oppositional relationship to ability’. it depends on its opposite for its existence and to fully represent what it signifies. the process of normalisation of or regularising the body, which has been orchestrated through and by means of binary opposites, is fraught with political ramifications. it is founded on the binaries of the regulariser versus regularised; the normer versus the normed upon; the namer versus the named; the abled versus the disabled, with power valences skewed in favour of the first members of these binaries. the able-bodied are the regulariser, the normer and the namer. the disabled are the regularised, the normed and the named. as such they are marginalised, objectified and subjected to someone by control and dependence (galvin 2003:150). by participating in the process of naming the disabled, we become accomplices in sustaining the politics that ‘set up a symbolic frontier between the aberrant and the normal’ (galvin 2003:154). within the framework of binary opposites, the language of disability is not only subjugating towards people considered disabled by society it is also a disenfranchising social construct. the ideas of derrida, in particular, the notion of deconstruction, the centre and the binary opposites, have allowed us to expose the often glossed over power dynamics inherent in the able-bodied versus disable-bodied binary. the use of disability as a term evokes strong feelings of inadequacy, deficit, dependency, abnormality, objectification and waiting to be rescued. it further ‘produces certain consequential effects upon the feelings, thoughts or actions’ of the affected individuals and the wider society (austin 1962:101). in light of the lens of bitso-lebe-ke seromo, which make sense within the context of the african (basotho) worldview, bokooa is a bad name; it is a negative language that invites, through the spiritual powers inherent in it, misfortune. on the basis of the fact that language can enliven or kill, naming as an aspect of language has the capacity to give life and to kill. by means of a name and given that a name, in an african world view, holds powers to reflect, indexicalise and symbolise both representationally and presentationally on the basis of the belief that it (name) carries the soul of a person, giving an ominous name is tantamount to condemning a person to a life sentence. we argue that the term ‘disabled’, on the basis of the above reflection, is exclusionary, stigmatising, demeaning, marginalising, disenfranchising, counter-developmental and anti-transformational. it further embodies inferiority, abnormality, imperfection, incapacitation and dependence. not only is it ominous, it also places upon pwd a perpetual mark of unattractiveness, which nobody would wish upon himself or herself. through such an appellation, pwds are reminded of the feature of ‘not-having’ or incompleteness expressed in the prefix ‘dis-’, which stands for deprivation or in other cases the contrary or the opposite. the prefix therefore deprives pwd of the feeling of being able, capable, capacitated, competent and empowered. although it is still the accepted term in general use, it seems to be overtaken by current changes that call for inclusion and transformation. a transformative difference is promoted through embracing the phrase differently abled, which was first proposed (in the 1980s) as an alternative to disabled, handicapped and other demeaning terms traditionally used on the grounds that it gave a more positive message and so avoided discrimination towards pwds. while the term ‘disability’ may have been discounted on the basis of its negative associations, we are yet to argue for the adoption of the term ‘differently abled’. the long history of disenfranchisement and negative treatment towards pwds has eventually seen efforts being made not only to demand better treatment by pwds but also to shirk the labels that are detrimental to the image and dignity of pwd (galvin 2003:7). it was in this context that the term ‘differently abled’ was coined in the united states in the early 1980s. it soon started to gain traction in society and in church. kabue (2016:213) observed that the term ‘differently abled’ was embraced and used within the circles of the world council of churches until it was supplanted by the terms ‘persons with disabilities’ and ‘disabled persons’. the term, though, has not completely died out. it still raises its head in protest (obosi 2010). in light of the ever-changing interplay between language, under the aspect of naming, and relationships, the term should remain the candidate for the category of disability. our arguments in favour of differently abled derive from anthropological, linguistic and legal considerations. firstly, the adoption of the term ‘differently abled’ is founded on the conviction that pwds are fully human, endowed with personal dignity and therefore deserving of the same respectful treatment that is accorded to every human. the term ‘differently abled’ seems to shirk the burden of deficit that is carried by the prefix dis-, representing, as it were, a lack or a deficiency. it further has proclivity for empowerment and human transformation. secondly, naming is one way in which someone is assigned a set of characteristics, which, according to lynch (2016:208), legitimised or delegitimised such a person. a name is imbued with meaning that derives from culture. as such, it influences attitudes and thoughts that people, within that culture, have about people who are named. it is in this sense that obosi (2010:6) proposed a disability-friendly language both in intention and execution. this simply points to the reality of diversity, which is a truly human feature. while we all share in the same humanity, we do so, each one of us, in different and unique ways. the term further emphasises abilities that as humans we all enjoy, in spite of the differences and limitations that each one of us has (woodhams & danieli 2000:405). differently abled promote abilities that may be different from those deemed normal, and are celebrated because they make life liveable. difference in this sense is construed to imply diversity, not inability or lack of abilities. dei (2004:345) warned that: ‘difference cannot be accentuated for its own sake’. humanity should, on the contrary, see beyond the myriad of differences, to possibilities of collective strength for more sustainable livelihoods. with a shift from disability to differently abled, a shift from binary and dichotomous pairs – which survive on unequal and oppositional relationship – is achieved. with the adoption of the term ‘differently abled’, the implied comparison between the able and the disabled is highly reduced. lastly, the fact that differently abled is founded on the dignity inherent in humanity leads into the human rights discourse, where, according to obosi (2010:6), getting the language right to match the human dignity in pwds is non-negotiable. in light of the above arguments, we propose the re-consideration of the term ‘differently abled’ to replace disability. conclusion no word has an inherent meaning. every word derives its meaning from the context within which it is used. the multiplicity of contexts provides for a multiplicity of words and their meanings. it has always been assumed that the word disability means the same thing for everybody in all contexts and that its usage is therefore without limitations. because words refer to reality, this reality is rightly perceived within its own context and worldview. it is in light of the above assumptions that we have interrogated the word disability and the extent to which it can be seen as disenfranchising if read through the lens of derrida’s deconstructive hierarchy of binaries as well as the sesotho linguistic device, bitso-lebe-ke seromo. the above two optics lend credence to the fact that disability is a disenfranchising category. if read through the lens of the binaries, disability does not occupy the centre. it is a marginal term, which represents the abnormal, the unwanted, the ‘other’ and the imperfect in the physical and moral sense. as long as the word disability carries such a meaning, it permanently denies pwd privileges that all other humans enjoy. within the sesotho world view, naming is not a random exercise. it carries immense spiritual power to reflect and indexicalise the behaviours of people. to give a bad name to a person, except for purposes of prevention or survival, is determining someone’s fate on a permanent basis. on that basis, we propose ‘differently abled’ as a designation that better appreciates human diversity while accentuating abilities in every human being. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions p.l.l. and m.m.s. equally contributed to the writing of this article. ethical considerations this article followed all ethical standards for a research without direct contact with human or animal subjects. funding information the national university of lesotho does not fund publication of research articles, and so it is the sole responsibility of the authors to secure funding for the publication of their articles. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references agyekum, k., 2006, ‘the sociolinguistics of akan personal names’, nordic journal of african studies 15(2), 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accepted: 13 nov. 2024; published: 18 dec. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: play is integral to optimal childhood development. occupational therapists often use play to improve play skills. however, when it comes to learners with autism spectrum disorder (asd) in south africa, there is limited research regarding play-based interventions that address the underlying motivators of play, namely, social play and playfulness. objectives: in this study, the authors present a rationale for the development of a protocol for a study aiming to measure the impact of the playbox africa intervention. this is a play-based occupational therapy intervention with the aim of enhancing the playfulness, social play and occupational performance of south african children with asd. method: the study will utilise a within-subject, repeated measures design and will be implemented over 16 weeks with 8–10 learners (aged 3–8 years) with asd attending a developmental-centre environment in johannesburg, south africa. the playfulness and social play of the learners will be assessed using the test of playfulness (top). the modified canadian occupational performance measure (m-copm) will be used to measure occupational performance factors. results: given that this protocol outlines an intervention that has not yet been implemented, there are no results to report on. conclusion: the development of this protocol could encourage the adaption of existing play-based protocols, for children with asd, perhaps within different settings or varying support needs. contribution: additionally, it could lay the foundation for future clinical trials and culturally relevant play-based interventions to be developed in the south african special needs context. keywords: intervention; paediatrics; play; school; neurodivergence; south africa. introduction play is one of the most invaluable contributions to a child’s optimal development (jensen et al. 2021; weisberg et al. 2016; yogman et al. 2018; zosh et al. 2018). while play skills can be learnt through structured or extrinsically rewarding play opportunities, authentic participation in play only occurs when a child is intrinsically motivated to play (pyle, deluca & danniels 2017; yogman et al. 2018; zosh et al. 2018). play interactions, which occur naturally and are initiated and led by the child, have a significant impact on the development and learning skills as more internal joy is experienced during play engagement which a child has an intrinsic desire to be involved in (yogman et al. 2018; zosh et al. 2018). one of the key elements of playfulness is the intrinsic motivation to play (di domenico & ryan 2017; masek & stenros 2021; muys, rodger & bundy 2016). playfulness, as described by the occupational therapist, bundy, in the model of playfulness, is the disposition to play in such a way that prioritises engagement over reality, expected outcomes and conventionality (muys et al. 2016; masek & stenros 2021). the test of playfulness (top), derived from the model of playfulness, measures the playfulness elements of framing, suspension of reality, autonomy, unconventionality, open-ness, non-consequentiality and focus (masek & stenros 2021; muys et al. 2016). intrinsic motivation, however, underpins all the elements of playfulness as it drives initiation of, expansion of and reengagement in play (masek & stenros 2021). according to the theory of intrinsic motivation, there are four factors that enhance the development of intrinsic motivation, namely, interest, autonomy, relatedness and competence. one of the forms of play that incorporates these promoting factors is social play, which refers to the parallel, co-operative, associative, collaborative, interactive or competitive play with other peers, playmates or adults (borah 2021; zheng, janiszewski & schreier 2023). for learners with autism spectrum disorders (asds), these elements of playfulness such as framing, suspension of reality and unconventionality may be limited. additionally, social play skills including turn-taking and non-verbal and verbal communication may be challenging (bauminger-zviely et al. 2020; mukherjee 2017). autism spectrum disorder is a neurodevelopmental disorder presenting with stereotypic, repetitive behaviours, restricted interests and difficulty interacting (mukherjee 2017). play-based interventions, however, as supported by the results of the studies presented below, could improve playfulness and social play for learners with asd. given the above-mentioned characteristics of learners with asd, the playbox africa intervention, outlined in this intervention protocol, aims to enhance the social play, playfulness and occupational performance of learners with asd. often within school-based occupational therapy, the focus is on enhancing learning skills and performance through play, instead of playing for play’s sake (gretschel et al. 2022; jensen et al. 2020; lunga, esterhuizen & koen 2022). when it comes to educators and the class environment, because of a lack of resources, practitioners, time, knowledge and skills regarding playfulness, guided play is limited and most learners only participate in free play (gretschel et al. 2022). as much as free play is beneficial, for learners with asd who have difficulty experiencing playfulness and social play, this type of approach to play could lead to isolation and limited opportunities to participate in joyful interactions, as there is no one facilitating the play in any way (jensen et al. 2021; gretschel et al. 2022). this is similarly the case at the centre in gauteng, which will be the study setting. for these reasons, the playbox africa intervention protocol will emphasise the underlying motivators of play, playfulness and social play, by utilising individualised, sustainable playboxes to encourage joint play with the therapist and playmates. the intervention will be a culturally relevant adaption of an existing joint play playbox approach (marwick et al. 2021) and will be based on play development principles and stages (nijhof et al. 2018), as well as bundy’s model of playfulness (cordier et al. 2009). the authors of this protocol conducted a systematic review of play-based occupational therapy interventions that enhance social play and playfulness, and marwick’s joint play playboxes approach was identified as the most feasible play-based intervention, especially for low to middle income countries (lmic) (nada hamadeh et al. 2022) and moderate to high support learners with asd (marwick et al. 2021; rautenbach et al. 2024). in this systematic review of 12 play-based occupational therapy interventions, the authors found that 11 of the interventions resulted in a moderate to large improvement in playfulness and social play for learners with asd. it was also found that six key principles could lead to the success of a play-based intervention, which this protocol will follow, namely, combining free, structured and guided play during play sessions; using caregiver-guided home play to encourage engagement; combining toys of interest with novel play objects and scripts and using visuals and video modelling as tools to demonstrate playful behaviour (rautenbach et al. 2024). additionally, it should be considered that interventions of two or more months may be more effective than shorter intervention periods (linstead et al. 2017). minimally verbal learners with high support needs could respond more willingly to caregiver-rated play scales such as the modified canadian occupational performance measure (m-copm) (beheshti et al. 2022) in combination with observation-based assessments, such as the top (fabrizi 2015; henning et al. 2016; kent et al. 2021). the systematic review highlighted that most interventions focused on learners who presented with verbal communication and moderate to high intelligence quotient (iq) scores. the research involving minimally verbal or high support asd participants was significantly limited, as only two of the reviewed studies focused on such learners (dionne & martini 2011; fabrizi 2015) and only one study was conducted in an lmic (anu, sugi & rajendran 2019). in high-income countries (hic), for those with disabilities, specialised services such as occupational and speech therapy, physiotherapy, mobility and alternative communication devices, affordable health care and education are more easily accessible. similarly, more play opportunities can be provided, as play spaces, play time, play objects and practitioners who are knowledgeable regarding play are accessible (franz et al. 2017; lunga et al. 2022; pillay, duncan & de vries 2022). these opportunities, however, are significantly limited, but perhaps even more necessary in lmics (pillay et al. 2022). it has been reported that, on a global scale, 95% of all learners with disabilities, including asd, live in lmic. the research, however, on how these children are treated, assessed and identified is scarce (franz et al. 2017; lunga et al. 2022; pillay et al. 2022). play-based, south african research focusing on asd is also significantly limited. south africa is an lmic that has a population of 60.6 million people of diverse socio-economic and socio-cultural backgrounds, and vast socio-economic disparities between rich and poor (nada hamadeh et al. 2022; natalie cowling 2023). given these characteristics, children with disabilities, including those with asd, living in south africa face the highest risk of not receiving quality health care and specialised education (pillay, duncan & de vries 2021). play-focused research in sub-saharan africa even in schools where there is some access to occupational therapy, the emphasis is often on academic performance rather than playing for plays’ sake. in 2016, ogunyemi and ragpot examined educators’ and caregivers’ views on work and playful learning in nigerian and south african government-funded school contexts. the study was not specific to learners with disabilities; yet, it was found that the creation of a play-rich environment in all sectors of childhood education in nigeria and south africa is a challenge. challenges include stakeholders who are not aware of the value of play, educators who are uninformed about a play pedagogy, limited facilities, inadequate funding, policy inconsistency and poverty and diseases (ogunyemi & ragpot 2016). in 2020, jensen and colleagues conducted a cross-cultural comparison of how educators in 8 south african and 12 canadian early childhood development classrooms guided play. educators qualitatively reported enhanced social-emotional development of learners when play was used as a learning tool within the classroom. suggestions as to how guided play could be incorporated into school settings were provided, including strategies such as active involvement, problem-solving and developmentally appropriate toys (jensen et al. 2020). lunga and colleagues (2022) echoed these findings with their play-based pedagogy for holistic development in south africa. through qualitative, action-based research, it was highlighted that social-emotional awareness could be improved by providing guided social play opportunities within the class environment (lunga et al. 2022). in a qualitative-descriptive study, addressing the promotion of play for learners with asd, gretschel and colleagues (2022) generated the themes acknowledging the child’s need for being in control of their play, making preferred toys available and adapting play with specific pairing with playmates, which describe the ways in which caregivers and educators promoted the play of children with asd. they emphasised that occupational therapists should continue to collaborate with caregivers and educators to ensure that interventions focus on play, which is child directed by creating spaces that foster the child’s motivation to play and their internal locus of control (gretschel et al. 2022). play-based interventions for learners with autism spectrum disorder play-based interventions that improve motivation to play are imperative to developing play skills. increased intrinsic motivation to play could lead to an increased number of playful interactions, and thus, play skills could be learnt and practised more. consequently, this could contribute to improved overall occupational performance (gretschel et al. 2022; masek & stenros 2021; parker 2019). francis and colleagues (2022) showed that play-based interventions can also have a positive, beneficial impact on the mental health of children with asd. improved mental health can lead to positive effect and increased internal motivation to play (francis et al. 2022). kuhaneck, spitzer and bodison (2020) as well as kent and colleagues (2020), through previous systematic reviews, have shown that play-based interventions improve play skills such as sharing and emotional awareness (kent et al. 2020; kuhaneck et al. 2020). play-based interventions have also been shown to improve the social skills of learners with asd, if underlying motivations for play are addressed through the intervention (deniz et al. 2022; o’keeffe & mcnally 2023). aim the aim of this protocol is to develop and then determine the effect of a play-based occupational therapy intervention on the playfulness, social play and occupational performance of children with asd. the research question that will be answered is: what is the effect of a play-based occupational therapy intervention on the playfulness, social play and occupational performance of learners with asd, within a school for differently abled learners? methodology this clinical protocol follows the guidelines stipulated by the standard protocol items: recommendations for interventional trials 2013 (spirit 2013) statement (chan et al. 2013). outlined below is the clinical protocol for the playbox africa intervention, which will follow a within-subject repeated measures design. the playbox africa intervention is a play-based occupational therapy intervention focused on developing the playfulness and social play of learners with asd. an existing playbox intervention (marwick et al. 2021) was adapted to be culturally relevant for the african context, hence the name ‘playbox africa’. during intervention sessions, individualised playboxes are used to encourage the learners to participate in social play with the interventionists and playmates. the playboxes include culturally relevant toys and objects, specific to the participant’s interests, along with novel play objects and scripts that are gradually introduced as the participant feels comfortable. protocol version protocol version 03 september 2024. this clinical protocol uses the stipulated headings for the reporting of intervention and clinical trials, as required by the spirit 2013 guidelines (chan et al. 2013). funding the centre, which will be the study context, will not be sponsoring or funding the study. all costs related to this research study will be self-funded by the author who is the primary investigator (pi). roles and responsibilities the author and pi of this study will be responsible for training the occupational therapists (interventionists) at the centre to implement the playbox africa intervention. training will include watching videos of the various play development stages that the intervention incorporates; role-playing the play interaction between the therapist and the learner while using the playbox to encourage playfulness and social play; providing ideas as to which toys, visuals, scripts and objects could be used for the individualised playboxes; education regarding playfulness, social play and how the play-based intervention could sustainably be introduced for moderate to high support learners with asd and an outline of the timeline of the intervention and expectations, such as preand post-tests, amount and structure of sessions. a secondary investigator (si), also an occupational therapist at the centre, but not an interventionist, will be trained by the pi to administer the top to participants to reduce bias (see figure 1). the pi and four interventionists, along with the caregivers of the participants, will be responsible for rating the m-copm. the pi will also collect and record participant demographic information from the guardians using a questionnaire, which will be summarised as seen in table 2. the pi will be responsible for recording the data from the top and m-copm baseline tests, preand post-intervention tests and follow-up tests (see figure 1). the pi will also be responsible for analysing the data, drawing up the intervention research report and disseminating the research findings. figure 1: roles and responsibilities according to intervention timeline. objectives the objectives of this study are: (1) to evaluate the effect of play-based occupational therapy on the playfulness of learners with asd using the top. (2) to evaluate the effect of play-based occupational therapy on the social play of learners with asd using relevant goals pertaining to each of the learners’ activities of daily living, play, social play, learning, gross and fine motor skills identified in the m-copm. (3) to evaluate the effect of play-based occupational therapy on the occupational performance of learners with asd using the m-copm. hypothesis a play-based occupational therapy intervention will enhance the playfulness, social play and occupational performance of learners with asd in a school for differently abled learners. trial design this study will use a within-subject-repeated-measures design, which allows for the intervention group to be their own control. this design also allows for a small sample size to produce accurate results and reduces the potential effect of group contamination (berger et al. 2021). baseline top and m-copm tests will be performed 2 weeks before the intervention period. baseline assessments could reduce bias and add to the significance of the intervention results (burgess, gebski and keech 2003; kossyvaki & papoudi, 2016). the outcome of baselines assessments could be compared to the intervention period results and therefore could assist in analysing whether the effect of the intervention period is significant and is truly a result of the intervention (legoff & sherman, 2006; wolfberg et al., 2015). after this 2-week baseline period, pre-intervention m-copm and top assessments will be conducted the week before the intervention. thereafter, a 16-week intervention period will take place. a 16-week intervention period was chosen for practical reasons as this period coincides with the duration of school terms. additionally, the systematic review conducted by the authors of this protocol (rautenbach et al. 2024) found that play-based interventions that are two or more months in length could be more effective than shorter intervention periods (linstead et al. 2017; rautenbach et al. 2024). one week after the 16-week intervention period, post-intervention m-copm and top assessments will be performed. the duration of 1 week was chosen given the results of the systematic review of playfulness and social play interventions, as the studies that used a pre-test post-test design measured the playfulness of the learners 1–2 weeks after the completion of the intervention. this was to ensure any improvements in play or social play as a result of the interventions were accurately and immediately noted. this duration is also practical given the length of the intervention and the structure of the school terms (rautenbach et al. 2024). one month after the intervention, follow-up m-copm and top assessments will be performed. study setting the sample intervention group will be chosen from the study population of the learners at a centre in johannesburg, south africa. the centre is registered under the gauteng department of education and is classified as a ‘centre’ for autism. it follows the differentiated curriculum and assessment policy statement (d-caps), which is aimed at grade r to five learners with intellectual and neurodevelopmental disabilities (department of basic education 2007). there are currently 70 learners with asd, ranging from moderate to high support. the classes, which are ethnically diverse, are divided into various levels of support. the diagnostic and statistical manual of mental disorders, version five (dsm-v), classifies asd according to levels of support (weitlauf et al. 2014). level three is the highest level of support. level two includes marked limitations in nonverbal and verbal communication skills, and level one requires lower levels of support (weitlauf et al. 2014). the learners at the centre predominantly fall within levels one and two, with about ten learners being level three. eligibility criteria the age band of 3–8 years for participants has been selected, as during this stage, play is central to the development and the child enjoys exploration, playing functionally and initiating games (maree 2021; nijhof et al. 2018; zosh et al. 2018). the participants should have a documented diagnosis of asd, as diagnosed by a medical doctor. additionally, they should have attended the centre for at least 3 months prior to the playbox africa intervention, ensuring they would have been exposed to 3 months of occupational therapy and speech and language therapy sessions at the centre. this will ensure that each participant, even if they recently joined the centre as a new learner, would have been exposed to the same duration and structure of therapy sessions to the extent that they will be comfortable with the style of therapy and therefore more likely to be motivated to participate in sessions without hesitation or sensory overload. new learners occasionally come from schools where there has been no exposure to therapy, which can cause initial resistance to participating in therapy. the participants should be at a level two or three support, according to the dsm-v criteria, which is included along with the diagnosis from a medical doctor, and should have a score of 36.5 or lower on the childhood autism rating scale, version two (cars2). the cars2 is an effective way to supplement the dsm-v diagnosis of asd, especially when determining the level of support each participant requires (chu et al. 2022). a cars2 score of 36.5 or below indicates ‘mild to moderate’ asd, therefore relating to level two support according to the dsm-v (weitlauf et al. 2014). this particular score range indicates that the participant demonstrates appropriate non-verbal communication skills and a certain level of joint attention and would be able to participate in a social play or play interaction (chu et al. 2022). participants who present with any physical or neurological disabilities, or who are older than eight or younger than 3 years old, have been at the centre for less than 3 months, or have a cars score above 36.5 or are classified as ‘level one’ according to the dsm v criteria, will be excluded from the study. outcome measures playfulness can be measured by the test of playfulness, version 4 (top), which has been validated across cultural groups and sexes and is applicable for ages 6 months to 18 years (bundy et al. 2001; muys et al. 2016). the top has been shown to be valid and reliable for children with asd of all support levels (harkness & bundy 2016; muys et al. 2016). the systematic review conducted by the authors of this protocol found that as caregivers were integral to the implementation of play-based interventions at home, caregiver-rated play scales were used during the assessment process (rautenbach et al. 2024). the m-copm is an outcome measure designed to assess client outcomes in the areas of self-care, leisure and productivity. two scores, for performance and satisfaction with performance, are obtained (beheshti et al. 2022; law et al. 1990). the m-copm allows for the caregivers of a participant to collaborate with occupational therapists to set and rate goals pertaining to the participant’s occupational performance and satisfaction in the areas of leisure, self-care and productivity (muys et al. 2016; rodger, braithwaite & keen 2004). outcomes the primary outcome of this study is improved playfulness. the play-based intervention’s effect on playfulness will be analysed using the raw score of the top. the secondary outcome is improvement in social play, which will be measured by analysing the change in caregiver ratings of performance and satisfaction with social play goals, identified using the m-copm. the tertiary outcome is improvement in occupational performance, which will be measured by analysing the change in caregiver ratings of performance and satisfaction for all goals identified using the m-copm. playbox africa occupational therapy intervention this playbox africa occupational therapy intervention outline is structured according to the spirit 2013 guideline for clinical trial interventions, section 11a-d, see online appendix 1, addendum a (chan et al. 2013). the playbox africa is a play-based intervention to encourage the playfulness, social play and occupational performance of learners with asd. the intervention consists of play-based, individual and group occupational therapy sessions, using joint play and a playbox individualised for the participant, a combination of free and structured play, caregivers and familiar peers who could model appropriate play and a home play programme. the intervention was developed using principles identified in a systematic review done by the authors of this study (rautenbach et al. 2024), the playboxes joint play approach (marwick et al. 2021) and guidelines from the play pedagogy within the south african context (lunga et al. 2022). intervention materials playfulness can be enhanced by focusing on the means not the end goal, non-literality, affect, which is positively displayed, and active involvement (masek & stenros 2021). each participant will therefore have an individualised playbox for school, and for home, which includes preferred toys and interests. the interventionists who have an existing therapeutic relationship with the participants will guide the pi as to which play objects and visuals are appropriate for the participants. additionally, the box will contain every-day recycled objects such as containers and straws, and objects from nature like sticks and stones. play scripts in the form of photos or pictures will be included in the box. an individualised play box means that toys could be selected to be culturally relevant according to the culture of the participant using the box. intervention procedure the intervention procedure is outlined in table 1 and allows for the adaption and replication of the intervention. the playbox africa play-based occupational therapy intervention will focus on group, individual and home play sessions which incorporate the use of caregivers to implement the intervention within the home environment. the group sessions will emphasise social play with peers and the home sessions will work on generalising playfulness at home with siblings or caregivers, however, the use of the playbox with the learners’ unique toys of interest, will be used throughout all the sessions (see table 1 for details). figure 2 outlines the intervention timeline with regards to when the pre-, postand follow-up assessments, as well as the 16-week intervention will take place. figure 2: participant timeline. table 1: details of intervention procedure. methods of cultural adaptation the playboxes joint play approach (marwick et al. 2021) will be culturally adapted for the intervention context by using recycled and natural materials in the playboxes. materials such as second-hand, wooden, or plastic beads, string, wire, sticks, stones and egg cartons are easily accessible for the centre and are culturally relevant for the south african context. the type of animals chosen for the playboxes will also be culturally adapted to the culture of the participant. for example, if the participant comes from or relates to living in a farm environment, these are the types of animals that could be used. individualised toys also involve cultural adaption as some learners’ preferred toys are relevant to their country, province or ethnic group of origin, and these will be included in the school and home playboxes. toys could include cars in the form of taxis or minibuses, culturally relevant lego® figurines that represent african people or wooden dolls that can be dressed in traditional african garments. the language in which the intervention is conducted will be tailored to the individual in the form of visuals, which will feature written descriptions in the participants’ language of choice. discontinuing the intervention the guardians or caregivers of participants can choose to withdraw from the study at any time, for any reason; however, this will be recorded by the pi and noted during the data analysis stage. if the participant has completed more than 8 weeks of the intervention, these data will be used during data analysis, with the consideration that half of the intervention was not complete. if a participant leaves the centre or falls ill and is not able to complete more than 8 weeks, these data will be excluded from analysis, and this will also be reported by the pi in the research report. such a participant will no longer form part of the study sample, and their scores will not contribute to calculating the overall effect of the intervention. improving adherence plans for participant retentionand adherence include the use of other staff members at the school, such as educators and speech and language therapists, reinforcing the concept of the play-based intervention. they will have been made aware of the intervention, its importance and value and the outcomes of the intervention. they will not provide the intervention; yet, they will motivate both the participants and guardians to remain part of the study when we meet as a multidisciplinary team for parent and caregiver feedback goal planning meetings that occur at least once per month. these practitioners will visually and verbally encourage the participants at school to attend therapy and can assist with the transition from the class to the therapy environment. encouragement will also be provided on a weekly basis in the form of messages and communication books (in the participants’ diaries) by the manager of the school, who has approved the intervention. the pi willsimilarly encourage the caregivers to continue implementing the home intervention by calling or sending personal messages and providing support in terms of play resources and guidance. prohibited interventions the participants will receive their usual speech and language therapy, physiotherapy and extra-mural activities such as horse riding during the 16-week intervention period; however, the practitioners involved in these above-mentioned activities will have been informed of those who are participating in the playbox africa intervention, and the participants will be prohibited from participating in any other clinical or research trials during the intervention period. this will also be stipulated during the caregiver training and in the consent forms. if the participant begins new medication or the dosage of their medication is altered during the intervention, this will not be prohibited; yet, it will be recorded as this could affect the participant’s overall demeanour. sample size the sample size for this study will be 8–10 participants. the study conducted by henning et al. investigating the effect of a play intervention on social play was used to establish the sample size (henning et al. 2016). the sample size calculation indicated that an estimated sample size of n = 8 is required for a two-sample paired-means test. this is based on a mean difference of 2.61 (standard deviation [s.d.] = 1.64) on the top and a 5% significance level (α = 0.05) with 80% power (β = 0.2) to detect a significant result (harkness & bundy 2016; henning et al. 2016). table 2: participant characteristics. recruitment convenience sampling will be used for recruitment. four weeks before the intervention is implemented, all learners aged 3–8 years at the centre will receive hard-copy consent forms to take home to their caregivers. the consent forms will be presented in english, isixhosa, isizulu and sesotho as these are the main home languages of the learners at the centre; however, the form can be translated to any other language if a guardian or caregiver requires that. all participants who have been given consent will then be screened by an si at the centre, with the childhood autism rating scale, second edition (cars2) (chu et al. 2022). this screening process forms part of the inclusion criteria, as to be eligible, the participant should present with a cars2 score of 36.5 or below. learners who meet the inclusion criteria are given consent, and provide verbal or written assent will be included in the sample. data collection and management data collection will occur for the first time during the baseline period, at 2 weeks before the intervention. this is when the si will collect the participants’ demographical information, m-copm and the top baseline data. data collection will then occur a second time during the pre-intervention test week, a third time during the post-intervention test week and a fourth time during the follow-up period, 1 month after the intervention. data capturing throughout the study process will be done by the pi. the data will be entered by the pi into an excel sheet located within the university microsoft onedrive. this can only be accessed by university staff and students using a two-step authentication process. the excel sheet will also be encrypted with a password. statistical analysis data will be analysed using stata – version 17 or above (see table vi). data will be described through the use of categorical values, using count (percentage; %), and continuous variables will be described through the mean (standard deviation; s.d.) or median (interquartile range; iqr), depending on the range of values in the data set. raw scores from the top and m-copm will be analysed using a paired t-test. the significance level will be set at p < 0.05. the effect of the intervention will be reported as the difference in mean scores of the top and m-copm preand post-intervention, with the corresponding 95% confidence interval. the effect of the intervention on maintenance of results will be reported as of the top and m-copm pre-intervention and follow-up as well as the difference in mean scores between post-intervention and follow-up. harms any potential harms that occur during the intervention will be reported according to the centre’s policy. an incident report is written up, recorded and sent to the caregivers. the caregivers then assess the report along with video footage, which is available from the security cameras at the school. caregivers will decide, along with the centre manager, whether the incident requires action. this process is stated in the consent forms. informed consent and assent assent from the participants will be gained before every assessment or play session. assent will be gained verbally for verbal participants, for example ‘do you want to play today?’ and the learner will be provided with a verbal choice of ‘yes’ or ‘no’ by the therapist. non-verbal learners will be provided with a written or visual choice of ‘yes’ or ‘no.’ it is expected that those involved in the study will be able to provide verbal assent as the eligibility criterion for participants include that the cars2 score should not be higher than 36.5. such a score indicates that participants will be able to understand and answer basic questions with regard to the research. dissemination policy if the intervention has a positive effect on the playfulness and social play of the participants, training will be executed by the pi for other professionals at other schools for differently abled learners in the surrounding area. if the intervention is successful, it will be adapted and incorporated into the daily programme of all the learners at the centre. the post-intervention debriefing session with caregivers and staff members at the school will also involve a presentation regarding findings of the research. the research results will be published in an appropriate peer-reviewed journal. conclusion by providing a detailed description of the playbox africa intervention protocol, which will be adopted in this proposed study, occupational therapists and other health professionals can be encouraged to develop other play-based interventions within the field of health and medicine or for other learners with disabilities. the playbox africa intervention could influence the way in which the daily programme or curriculum for learners with asd is structured, so that more individualised, culturally relevant and guided play occurs within schools. through developing the playbox africa protocol, the authors and interventionists noted that occupational therapists should continue to collaborate with caregivers and educators to foster opportunities for playfulness and social play. caregivers and guardians are very knowledgeable as to their learner’s needs and play preferences, and this knowledge should be valued and used when implementing the intervention and creating the individualised playboxes. it is also important to consider the developmental age, stage and sensory needs of the learners when creating a play-based intervention. additionally, a successful play-based intervention should be culturally adaptable; individualised to the learners and involve guided, social and free play; and the level of support required by the leaners should be considered. most importantly, the underlying motivators of play, playfulness and social play should be the emphasis of play-based interventions for learners with asd. acknowledgements the authors of this protocol extend acknowledgement to the centre where the intervention will take place, for providing the necessary resources and ideas to implement and develop the intervention. this article is partially based on the author’s thesis entitled ‘better when i’m playing developing the playfulness and social play of learners with autism spectrum disorders through play-based occupational therapy’ towards the degree of masters in occupational therapy in the department of medicine and health sciences, stellenbosch university, south africa, on 01 march 2024, with supervisors nicola plastow and munira hoosain. it is available here: https://scholar.sun.ac.za/handle/10019.1/130672. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions g.r., the primary investigator, was responsible for the development of intervention and methodology, implementation of the intervention, capturing data, analysing data, writing of the protocol and research report and conceptualisation of ideas. supervisors n.p. and m.h. and co-author m.z. were responsible for editing the protocol and research report, use of software for data analysis and conceptualisation. ethical considerations ethical approval for the study was sought by the health research ethics committee at the university (ethics number: s22/11/229; project id: 26773). written permission and ethical approval from the manager at the centre have been granted (see online appendix 1, addendum a). the site being referred to as a ‘centre’ did not have any ethical approval implications given that the site is a privately run and registered occupational therapy practice. the university of strathclyde in glasgow was contacted via email and phone call by the pi to request permission to adapt the playboxes joint play approach (marwick et al. 2021). funding information the authors received no financial support for the research, authorship and/or publication of this article. 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discussion conclusion acknowledgements references about the author(s) brenda n. onguti innovations unit, jhpiego, johns hopkins university, united states deepti tanuku innovations unit, jhpiego, johns hopkins university, united states elizabeth j. himelfarb hurwitz innovations unit, jhpiego, johns hopkins university, united states nathaniel c. moller innovations unit, jhpiego, johns hopkins university, united states youseph yazdi johns hopkins center for bioengineering innovation & design (cbid), johns hopkins university, united states shannon egan innovations unit, jhpiego, johns hopkins university, united states eva s. bazant monitoring evaluation research unit, jhpiego, johns hopkins university, united states anthony gichangi monitoring evaluation research unit, jhpiego, johns hopkins university, kenya citation onguti, b.n., tanuku, d., himelfarb hurwitz, e.j., moller, n.c., yazdi, y., egan, s., bazant, e.s. & gichangi, a., 2017, ‘use of a design challenge to develop postural support devices for intermediate wheelchair users’, african journal of disability 6(0), a346. https://doi.org/10.4102/ajod.v6i0.346 case study use of a design challenge to develop postural support devices for intermediate wheelchair users brenda n. onguti, deepti tanuku, elizabeth j. himelfarb hurwitz, nathaniel c. moller, youseph yazdi, shannon egan, eva s. bazant, anthony gichangi received: 15 nov. 2016; accepted: 01 may 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract the provision of an appropriate wheelchair, one that provides proper fit and postural support, promotes wheelchair users’ physical health and quality of life. many wheelchair users have postural difficulties, requiring supplemental postural support devices for added trunk support. however, in many lowand middle-income settings, postural support devices are inaccessible, inappropriate or unaffordable. this article describes the use of the design challenge model, informed by a design thinking approach, to catalyse the development of an affordable, simple and robust postural support device for lowand middle-income countries. the article also illustrates how not-for-profit organisations can utilise design thinking and, in particular, the design challenge model to successfully support the development of innovative solutions to product or process challenges. introduction globally, an estimated 70 million people require wheelchairs (world health organization [who] n.d.). when a wheelchair user is equipped with an appropriately fitting wheelchair that provides postural support, it promotes physical well-being and improves quality of life. for wheelchair users, better posture means greater comfort, enhanced safety, improved breathing and digestion, and greater mobility (who & usaid 2013). wheelchair users who have good trunk strength and stability can independently sit upright when provided with a basic postural support system which includes the backrest, cushion, footrests and armrests of a wheelchair (who, ispo & usaid 2008). however, many wheelchair users have postural difficulties and require supplemental postural support devices for upright seating. postural support devices brace the wheelchair user’s body in an upright position when they are unable to do so independently. the design of postural support devices varies depending on the support they are intended to provide; different devices are used to provide stability to the pelvis, hips, trunk, head, thighs or lower legs (who & usaid 2013). as few as 5% of persons in need of properly fitted wheelchairs have access to one (who & usaid 2012). globally, the lack of access and availability disproportionately affects wheelchair users in lowand middle-income countries. a number of reasons contribute to this: wheelchairs that have integrated postural support devices are more expensive and are difficult to obtain. additive postural support devices are not standardised across manufacturers or wheelchair style and cannot be effectively interchanged between wheelchairs – for example, when a user acquires a new wheelchair. poor wheelchair fit is one of the contributors to wheelchair abandonment and underutilisation in less-resourced settings (mukherjee & samanta 2005). postural support devices therefore need to be redesigned for use in lowand middle-income countries to ensure availability, accessibility and suitability for individuals living with mobility impairments. what is a design challenge? a design challenges is an innovation competition or collaboration that focuses on quickly generating product or process designs to meet the specific needs of particular end users (design council n.d.). a design challenge draws on design thinking, a problem solving methodology that encourages rapid prototyping, iteration, and learning, to help propel innovators past common design roadblocks and prioritises product suitability and usability by providing structured opportunities for stakeholder feedback. when properly implemented, design thinking disrupts thinking based on conventional biases, like an inclination to one’s own view of a problem and its solution or an end users’ inability to describe their need (jeanne 2015). therefore, value is placed on developing a comprehensive understanding of the needs of stakeholders thus reframing design obstacles to yield solutions with lasting impact (ideo.org 2015). a design challenge for wheelchair postural support devices accelovate, a united states agency for international development-funded programme led by jhpiego in baltimore, md, united states, hosted a design challenge to catalyse the design of postural support devices suitable for and desirable to end users in lowand middle-income countries. innovators from around the world were provided with seed funding, technical assistance and peer review to guide, support and accelerate the design and early-stage commercialisation of high-quality postural support devices for less-resourced settings. accelovate’s design challenge was conducted in three phases: (1) identification of need, (2) concept development and iteration and (3) transition to commercialisation. phase i: identification of need the accelovate team consulted with wheelchair and disability experts to better understand the current challenges faced by those living with mobility impairments in less-resourced settings. the experts confirmed that a more appropriately designed postural support device – one that is sturdy, affordable, locally repairable and useable across a wide variety of wheelchairs – would make a tremendous improvement in wheelchair users’ lives in lowand middle-income countries. incorporating the feedback from experts, the design challenge focused on functional, market-ready postural support device prototypes. by defining the challenge and sharing findings among potential innovators, the accelovate programme reduced information barriers to effective problem solving and created an environment for the efficient use of resources. armed with high-quality information from disability experts, innovators could move directly into the concept generation and development stage without spending resources on redundant user and market research. phase ii: concept development and iteration the design challenge convening organisation is not typically the key innovator; instead, the convening organisation facilitates competition, collaboration and cross-pollination of ideas and insights across teams of innovators. to ensure the process generated contextually appropriate designs, accelovate encouraged and prioritised designers and innovators in less-resourced settings. in an effort to diversify perspectives, accelovate also targeted innovators outside the mobility sector, including universities, non-governmental organisations, faith-based organisations and for-profit partners. through email blasts, social media and conference presentations, the accelovate design challenge reached more than 100 000 people from 32 countries. the design challenge technical review committee, with a broad range of expertise, evaluated the preliminary proposals and prototype submissions, facilitated the development of the design challenge process, developed selection criteria and mentored innovation teams. furthermore, the technical review committee provided support in areas where the innovators lacked expertise. the multidisciplinary team included experts in business, engineering, clinical practice and public health; their varied perspectives prompted innovators to consider diverse product development and market introduction factors. in total, 12 concept notes were submitted for consideration. the technical review committee winnowed submissions and the six that were determined to have the highest potential marketability, sustainability, and usability were selected. these six teams were awarded small seed grants to support further development of their designs and to build initial product prototypes. design challenges encourage collaboration through competition. rival innovators compete to develop the best solution to a problem. once the initial prototypes were complete, the teams were invited to washington, dc, to present to the review committee and the other innovators. after evaluation by the review committee, the teams also participated in a peer review process. the three prototypes considered most desirable, technologically feasible and commercially viable were selected to receive additional funding and technical support to develop and test final prototypes. opportunities for collaboration and co-creation were critical for the development of the final postural support device prototypes. these opportunities encouraged competitors to support each other and share information and ideas; in this way, all participants, even those that were not ultimately designated as the top teams, benefited from participation. phase iii: transition to commercialisation accelovate facilitated connections between the innovators and important potential donors, distributors and purchasers within the disability and mobility sector. throughout the accelovate design challenge, innovators were encouraged to actively seek feedback from stakeholders and end users with specialised expertise in lowand middle-income health systems. during the last phase of the design challenge, innovation teams were required to develop commercialisation and implementation strategies. each team was prompted to evaluate their target markets – focusing on stakeholder dynamics, barriers to entry and risk mitigation factors – to facilitate the development of robust business plans for introduction and product adoption. two postural support device prototypes that were developed during the accelovate design challenge have since moved to commercial production and are being implemented and used in east africa and india. following the design challenge, one of the finalist innovation teams elected to purchase a unique component from a rival participant to further enhance their product. this collaborative relationship between rival teams, resulting in the production of a potentially superior end product, is a major benefit of the design challenge. discussion the objective of this article was to highlight how design challenge, a tool in the design thinking toolbox, was utilised to catalyse the design of affordable, simple and robust postural support devices for the low-resource settings. limitations of the design challenge a limitation of the design challenge is that if awareness of the design challenge process fails to reach the right organisations, the best organisations may not apply. to mitigate this, accelovate made significant efforts to disseminate the request for applications to ensure that innovators from around the world had the opportunity to participate. another potential limitation is that the quality of the marketable product is dependent on the innovative team. without specific standards and ways of measurement, a design challenge may not yield the intended outcome. accelovate countered this through having a rigorous selection criterion on what concept and prototypes got funded. accelovate provided constant support to the teams awarded a sub-grant via relevant theme focused webinars, mentorship from technical review committee members and virtual collaboration sessions with other teams. funders of an organisation holding the design challenge may have certain restrictions on who can apply to participate. these restrictions decrease the pool of applicants and potentially lock out some competitive innovative teams. lastly, though it was hoped that innovative teams from diverse social and commercial sectors would apply, only those in the wheelchair sector actually did. this may have resulted from the problem statement not appealing to those outside the sector. the contribution of outside organisations was unknown in this case. conclusion too often, innovations flounder during market introduction because designers and developers fail to consider the context in which their products will function and the full range of stakeholder and user perspectives. design thinking prompts innovators to challenge their assumptions early and often by continuously seeking feedback from key stakeholders, including end users, service providers, distributors or manufacturers. this helps innovators to share new perspectives and ideas. this new perspective reframes product and process development, emphasising the core needs of end users, market dynamics and the product environment as fundamental considerations of early-stage product design. the design challenge offers an ideal product development framework that can be utilised in lowand middle-income settings. it is a model for lean innovation; it encourages the efficient use of resources and prioritises product suitability and sustainability. the accelovate design challenge illustrates how not-for-profit organisations can successfully support the development of innovative solutions to product or process challenges by focusing on the user and other stakeholders as a means to efficiently develop viable innovations. the design challenge – and design thinking more generally – provides a robust product and process design platform for donors, governments and implementing organisations and should be considered in other sectors focused on lowand middle-income settings. acknowledgements this design challenge was made possible through the generous support of the american people through the united states agency for international development (usaid), under the terms of the technologies for health award aid-oaa-a-11-00050. the contents are the responsibility of the authors and do not necessarily reflect the views of usaid or the us government. the authors would like to thank jhpiego staff in the united states for conceiving and administering the wheelchair design challenge. the authors would also like to express their gratitude to the johns hopkins center for bioengineering innovation & design, johns hopkins university, for their contribution in conceiving the wheelchair design challenge. the authors are grateful to the members of the technical review committee for their diverse technical expertise and guidance throughout the wheelchair design challenge that saw the selection of functional, market-ready postural support device prototypes. lastly, this design challenge would not have been possible without the designers and innovators from across the world who participated in the wheelchair design challenge. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced the writing of this article. authors’ contributions b.n.o. was the lead writer of this manuscript. e.j.h.h., d.t. and n.c.m. conceived, administered and oversaw the accelovate design challenge. y.y. conceived and guided the design challenge and participated in the review committee. e.s.b., a.g. and s.e. participated in the drafting of this manuscript. references design council, n.d., design challenges, viewed 12 february 2017, from http://www.designcouncil.org.uk/design-challenges ideo.org, 2015, the field guide to human-centered design, 1st edn., ideo.org, san francisco, ca. jeanne, l., 2015, ‘perspective: linking design thinking with innovation outcomes through cognitive bias reduction’, journal of product innovation management 32(6), 925–938. https://doi.org/10.1111/jpim.12163 mukherjee, g. & samanta, a., 2005, ‘wheelchair charity: a useless benevolence in community-based rehabilitation’, disability and rehabilitation 27(10), 591–596. https://doi.org/10.1080/09638280400018387 world health organization (who), n.d., disability and rehabilitation: wheelchair service training package-basic level, viewed 12 february 2017, from http://www.who.int/disabilities/technology/wheelchairpackage/en/ world health organization (who), ispo & usaid, 2008, guidelines on the provision of manual wheelchairs in less resourced settings, viewed 20 september 2016, http://www.who.int/disabilities/publications/technology/wheelchairguidelines/en/ world health organization (who) & usaid, 2012, wheelchair service training package: reference manual for participants. basic level, page 1, malta, viewed 20 september 2016, from http://apps.who.int/iris/bitstream/10665/78236/1/9789241503471_reference_manual_eng.pdf world health organization (who) & usaid, 2013, wheelchair service training package. reference manual for participants. intermediate level, malta, viewed 20 september 2016, http://www.who.int/disabilities/technology/wheelchairpackage/wstpintermediate/en/ abstract background research networking training conclusion acknowledgements references about the author(s) richard vergunst department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa judith mckenzie department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation vergunst, r. & mckenzie, j., 2022, ‘introducing the including disability in education in africa research unit at the university of cape town’, african journal of disability 11(0), a946. https://doi.org/10.4102/ajod.v11i0.946 original research introducing the including disability in education in africa research unit at the university of cape town richard vergunst, judith mckenzie received: 09 sept. 2020; accepted: 03 nov. 2021; published: 24 jan. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the including disability in education in africa (idea) research unit at the university of cape town in south africa was established in 2020 and focused on carrying out research studies in the field of disability and education in africa and beyond. objectives: the objective of this article was to introduce the research unit and highlight its vision, mission and objectives. method: a general review of the research unit. results: the idea research unit plays an important role in the research arena within south africa and africa when it comes to disability issues in education. conclusion: more networking and collaboration should take place between the idea research unit and relevant stakeholders in the field of disability and education. keywords: disability; education; research; africa; unit. background there is a global move towards inclusive education (donohue & bornman 2015). inclusive education entails identifying and removing barriers and providing reasonable accommodation in order to enable every child to participate and achieve within mainstream educational settings (united nations 2016; world health organization 2011). the movement towards inclusive education has its roots in the salamanca statement (unesco 1994) through the united nations convention on the rights of persons with disability (united nations 2006) and most recently within the sustainable development goals (sdgs) (united nations department of economic and social affairs 2015). the adoption of the sdgs focused on the education of children and young people with disabilities, particularly in the global south (taneja-johansson, singal & samson 2021). within the south african context, the constitution (republic of south africa 1996) and the south african schools’ act (republic of south africa 1996) affirm the right to education for all and education white paper 6: special needs education – building an inclusive education and training system (department of education [doe] 2001) provides specific policy and implementation strategies and targets for the inclusion of those who experience barriers to learning, including children with disabilities. however, despite this context and education being recognised as a key issue for people with disabilities (parnes et al. 2009), disability, in reality, remains a significant factor in exclusion from education and schooling that is evident in educational policy and practice (bines & lei 2011). this is particularly true for the global south where the impact of disability has been somewhat neglected in relation to education (bines & lei 2011). for instance, united nations educational, scientific and cultural organization (unesco) estimates that 90% of children with disabilities in the global south do not attend schools with fewer than 10% of children with disabilities in africa attending school (unesco 2020). in most african countries, children with disabilities persistently face barriers to education (ben-david & nel 2013). although access to education ‘is a fundamental human right, children with disabilities in sub-saharan africa are often excluded and marginalised’ (deluca, tramontano & kett 2014; dube et al. 2021:1; united nations n.d.). in 2012, it was estimated that approximately 600 000 learners with disabilities were not in school (department of basic education [dbe] 2015), which is more than double the 280 000 estimated excluded learners in 2001 (doe 2001). the 2011 census indicates that persons with severe disabilities are the most disadvantaged when it comes to educational outcomes (statistics south africa [ssa] 2011). this exclusion from education is out of line with the constitution of the republic of south africa (act no. 108 of 1996) and the goals of education white paper 6 (ewp6) (doe 2001). furthermore, even for those learners who are in school, their learning and participation are not at all satisfactory (kelly & mckenzie 2018), with only 0.5% of all learners writing the national senior certificate in 2018 being recorded by the dbe as having special educational needs (dbe 2018). the national prevalence rate of disability amongst school-age children is between 2.6% and 10.8% (ssa 2011). the including disability in education in africa (idea) research unit at the university of cape town has evolved from the university’s teacher empowerment for disability inclusion (tedi) project, which was created in response to a call to address this exclusion and poor-quality education of children with disabilities in south africa (http://www.dhrs.uct.ac.za/dhrs/divisions/disability/tedi). as commented by cosier and pearson (2016), the fields of disability studies and teacher education ‘have not communicated and collaborated in deep and meaningful ways’ (p. 1) in the past. communication and collaboration between these two parties could result in a more inclusive and higher quality education for children with disabilities in south africa. the tedi project was, therefore, developed by the disability studies division in the department of health and rehabilitation sciences at the university of cape town in partnership with christoffel-blinden mission (cbm) and co-funded by the european union and cbm to address the exclusion and poor-quality education of children with disabilities in south africa (http://www.dhrs.uct.ac.za/dhrs/divisions/disability/tedi). in order to provide an empirical basis for our work, we conducted research studies resulting in the following reports: teacher education: an analysis of the availability of teacher education addressing the educational needs of learners with severe to profound sensory or intellectual impairments starting where we are: situational analysis of the educational needs of learners with severe to profound sensory or intellectual impairments in south africa perceptions of south african teachers on how they feel supported in teaching learners with special educational needs: perspectives on inclusive education in south africa educating and caring for children with profound intellectual disability: a manual for carers and teachers. drawing on the above-mentioned research into learner and teacher education needs, 5-day face-to-face courses were developed for each of these focus areas. a total of 114 south african educators have participated in the face-to-face courses nationally. the four courses were on: disability studies in education the education and care of learners with severe to profound intellectual disabilities teaching learners who are blind or have low-vision teaching learners who are deaf or hard of hearing. complementary 4–5-week massive open online courses (moocs) were also developed. over 8000 people have participated in the moocs, to date. in the process, we have learned a great deal about disability inclusion in education. in addition, tedi has developed a network of stakeholders in the education of children with severe to profound disabilities with government departments, civil society and institutions of higher education. the tedi project came to an end in august 2020 and evolved into a new research unit idea at the university of cape town. within the south african inclusive education policy, the move away from educational provision on the basis of disability category towards meeting identified support needs has rendered any reference to disability as problematic and even counter to the broad vision of inclusive education, given the negative effects associated with labelling practices (baglieri & shapiro 2017). however, a distinction between different types of barriers remains within policy between those barriers that are extrinsic to the child (e.g. social and curriculum barriers) and those that are intrinsic to the child (impairment related) (mckenzie et al. 2020; walton et al. 2009). we adopt a disability studies perspective, which blurs the distinction between intrinsic and extrinsic barriers because any impairment can be more or less disabling depending on the social conditions existing in the environment. impairments are viewed as an interaction between a person and their environment and not as purely intrinsic to the child (baglieri et al. 2011). we are aligned to a disability studies in education (dse) approach, which contextualises disability as a political and social phenomenon and foregrounds the experiences and voice of disabled people and their families. disability studies in education seeks to promote social justice and equitable educational opportunity and rejects a deficit model of disability preferring to focus on asset-based approaches such as universal design for learning (udl) (baglieri et al. 2011; connor 2019). this approach resonates with the international classification of functioning, disability and health (world health organization 2002), where disability is seen in the light of how the functioning and disability of an individual occurs in a context and includes a list of environmental factors. we therefore unashamedly use the term disability reinstating the disability label within inclusive education as a form of resistance to the neglect of impairment-specific needs within the system (mckenzie, kelly & shanda 2018). in so doing, we do not abandon the notion of barriers to learning and view these barriers as impacting upon learners with and without disabilities and accepting that inclusive education is about addressing all barriers to learning but that specific barriers might require specific types of support. recognising that disability is a significant (but by no means the only barrier), the research unit is to hone in on disability as a significant barrier ‘at both intrinsic and extrinsic levels in the parlance of south african education policy’ (mckenzie et al. 2020:4) within an inclusive education framework, paying attention to both disability studies and education policy. the including disability in education in africa vision to promote the inclusion of disability in education at all levels, both formal and informal, in africa and beyond, to ensure no-one is left behind in the pursuit of equitable quality education and lifelong learning the including disability in education in africa mission statement to provide expert, relevant and comprehensive research on disability inclusion in education in africa, by focusing on the education and support of people with disabilities, their families and their communities within the context of inclusive educational systems to facilitate the development of appropriate and relevant curriculum frameworks for disability inclusion to develop and disseminate innovative face-to-face and online training in inclusive education for teachers, education officials, support workers, community stakeholders, therapists and others to conduct multifaceted research pertinent to policy development and implementation in inclusive education and explore the barriers and supports that people with disabilities experience in accessing meaningful education to stimulate dialogue and discussion regarding disability inclusion amongst all relevant stakeholders and networks the including disability in education in africa primary objective to act as hub for future research in inclusive education in africa and beyond, to promote networking and to carry out training within this field. it is envisaged that the unit will be a catalyst to further ideas and knowledge, and promote and strengthen the area of inclusive education locally, nationally, regionally and globally. the work of including disability in education in africa the idea research unit operates in the areas of research, networking and training services: research the idea research unit’s main focus is its research in disability inclusion in education in africa with the aim of providing quality, applied, action and impact research. this research will thus address the current paucity of knowledge in this particular area of education and will subsequently inform and support decisions that need to be made to make education more inclusive. the overall objective of idea is to provide expert, relevant and comprehensive research on disability inclusion in education in africa, paying specific attention to the education and support of children with disabilities and their caregivers, families and communities within the context of inclusive educational systems. we are dedicated to the provision of expert, relevant (culturally congruent) and comprehensive research and consultation and multifaceted approaches and/or multi-stakeholder collaborative practices for persons with disabilities, caregivers, families and communities within the context of quality, inclusive educational systems. through idea, we will facilitate the development of appropriate and relevant curriculum frameworks for disability inclusion and conduct multifaceted research pertinent to policy development and implementation in inclusive education. the core research areas are as follows: analysis of data already collected by tedi as it relates to teacher empowerment and disability inclusion evaluation of the face-to-face and online training courses developed by tedi an investigation into the ways in which inclusive education policy and practice in south africa enables quality and equitable education for children with disabilities comparative studies of inclusive education in the global south exploration of instructional and social practices that support inclusion, such as teacher education, parent support, leadership skills and similar studies theoretical perspectives on disability in education, drawing upon frameworks of critical disability studies and post-colonial theory. networking the focus of the part of the research unit is to network with other universities, research organisations, non profit organisations (npos) disabled persons organisations (dpo) and other relevant stakeholders in the field of inclusive education. through networking, idea also seeks to advocate for the right to equitable and inclusive education for learners with disabilities, highlighting the need for stakeholders at all levels to view the vision of idea as a human rights issue. education is a human right for all children, which was affirmed by the universal declaration of human rights (united nations n.d.). the network will facilitate collaboration that will strengthen advocacy and programmes around disability and education. relationship with these stakeholders is fundamental to building a unified stance in the approach to developing a more inclusive education. networking plays an integral role in building and further developing the landscape of teacher education for inclusive education. through idea we aim to stimulate dialogue and discussion regarding disability inclusion amongst all relevant stakeholders and networks. we also aim to contribute to scientific knowledge in the field of disability inclusion in education, broaden awareness and showcase the importance of disability inclusion in education. we act as the secretariat for the association for the advancement of inclusive and equitable education in south africa (aaieesa). networking is intrinsically linked to capacity building as the sharing of knowledge and experiences across different learning communities empowers community groups to participate in inclusive education in their own communities. to this end, we have resources for parents and teachers on our webpage and we run free webinars on different aspects of disability and inclusive education. training training is also a key focus of the unit. training and teaching of educators, parents, communities and other stakeholders on how to be more comprehensive in their respective work is imperative to make inclusive education more accessible and participative at grassroots level. it is only through training that stakeholders will be able to be more effective and impactful to children, scholars and students with disabilities. the training offered through idea also emphasises the need for the various role players in the inclusive education sector to build communities of practice and gain professional agency. a service that idea provides is the development and dissemination of innovative face-to-face and online training in inclusive education for teachers, education officials, support workers, therapists and other inclusive education stakeholders. the online and face-to-face courses are focused on the following two areas of need: training for teachers and district officials training for higher education institutions, especially technical vocational education and training (tvet) and private teacher education colleges. examples of the work we do: one of the idea research unit’s first research projects was to perform an evaluation study for cbm-international (cbm-i). christoffel-blinden mission-international approached the idea research unit requesting it to perform consultancy on a programme evaluation aimed at assessing the effectiveness of its community based inclusive development (cbid) partner driven projects. these projects have a variety of specific aims, but broadly support disability-inclusive development and the creation of social and material environments, which promote the participation of people with disabilities in all aspects of community life. the evaluation will focus on collecting baseline data (in 2021) and follow-up data (in 2022 and 2024) from 16 programmes across eight countries (zimbabwe, rwanda, ethiopia, togo, cameroon, india, honduras and pakistan), all with diverse goals in inclusive development. the following were objectives of the evaluation: to reflect an accurate picture of the status quo in selected cbid programmes in eight countries in relation to the objectives provided in cbm’s own cbid initiative plan enrich an understanding of the communities in which cbm-i’s projects operate, including the identifying of problem areas, in order to facilitate improvement in the implementation of the ideals of cbid including disability in education in africa was also commissioned by cbm to undertake a review to identify current udl practices, training needs and relevant online resources in lowand middle-income countries (lmics). the specific terms of reference were to review the current practice of udl in lmic settings with a view to forming recommendations for capacity development resources and materials, including: literature review of the use of udl in lmic exploration of the potential of udl to address systemic discrimination based on race or ethnicity and disability recording the online udl materials that are available into a database interviewing several key informants making recommendations for online learning for udl in lmics a report titled review of universal design for learning in lowand middle-income countries was written and submitted to cbm (mckenzie et al. 2021). conclusion the idea research unit was established in recognition that there was a gap in the inclusive education arena – especially in the global south – and so it created a more focused approach to challenge this state of affairs. with more relevant research, networking and training, idea hopes to highlight the issues pertaining to disability and education from a critical perspective that interrogates the application of globalised concepts and theories in the african context. in so doing, african approaches and strategies to addressing barriers to learning and development will be explored, making a contribution to the international literature on inclusive education. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions r.v. and j.m. both contributed equally to this article. ethical considerations this article followed all ethical standards for research without any direct contact with human or animal subjects. funding information this research work received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed for the purposes of this article. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references baglieri, s. & shapiro, a., 2017, disability studies and the inclusive classroom: critical practices for embracing diversity in education, routledge, london. baglieri, s., valle, j.w., connor, d.j. & gallagher, d.j., 2011, ‘disability studies in education: the need for a plurality of perspectives on 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africa citation watermeyer, b. & ned l.y., 2025, ‘the scintillating scholarly contribution of professor leslie swartz: how do you hold a moonbeam in your hand?’, african journal of disability 14(0), a1866. https://doi.org/10.4102/ajod.v14i0.1866 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. editorial the scintillating scholarly contribution of professor leslie swartz: how do you hold a moonbeam in your hand? brian watermeyer, lieketseng y. ned copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). on the occasion of the retirement of professor leslie swartz, this special issue is a celebration of a truly extraordinary academic career, characterised as much by generosity of spirit as intellectual brilliance. surveying swartz’s academic and social impact achievements over more than 40 years, it is difficult to know where to begin. seemingly boundless energy, creativity and razor-sharp analytical ability have led to more than 450 scholarly publications, a hirsch index of 71 on google scholar, and recognition by south africa’s national research foundation (nrf) as an a-rated scientist. added to that is a catalogue of awards and honours far too weighty to list here; we will enumerate only some of them below. in the pages of this special issue are testimonies from many of swartz’s 50 successfully graduated doctoral students, as well as others he has inspired and supported, whose diverse research agendas reflect the bold curiosity of their polymath mentor. reflecting on this, and on swartz’s mentorship role in both of our lives, we recalled a favourite saying of his. in conversations about theory or a possible research project, the question would arise of how to conceptualise an idea or come up with a snappy title for an article. swartz would look into the middle distance and muse, with characteristic wit and not a little irreverence, ‘well, how do you hold a moonbeam in your hand?’ a moment’s research reveals that this maxim is a metaphor for trying to grasp something beautiful, magical and elusive – something that can be felt, but never quite captured. with this, swartz communicated several things, besides his ever-present taste for humour which wraps unmatched perceptiveness up with wit gleefully doused in the ironic and cliché. foremost is a humble recognition of the limits of scholarship, in particular of our attempts to contain the complexity of human experience, especially of socially engendered suffering. academic work in a trauma-ridden area, such as disability oppression, easily leads to an incapacitating form of performance anxiety, surrounding the fear that one will fail as a scientific communicator to do justice to the gravity of struggle in real lives. swartz’s unique response affirms that we should be appropriately modest in our claims – that the moonbeam of conclusive knowledge on any human issue can never be grasped. with this stance, both ourselves and countless others have been freed to simply explore the best, imperfect contribution we can make, all the while drawing on swartz’s guidance and deeply held belief that our work, our voice, is of value. what is modelled here is the combining of exceptional academic rigour with the playful and the humane, in a manner which balances excellence with radical inclusivity. at the heart of swartz’s career in the humanities and health sciences broadly, and disability studies in particular, is a combination of unerring compassion, a radical but realistic vision for social change, and at every step, the valuing of relationships built on mutual recognition and respect. readers of the african journal of disability, of which swartz is the founding editor, may be unaware of how vastly his scholarly influence stretches across disciplines beyond disability studies. trained as a clinical psychologist at the university of cape town (graduated 1982), swartz began his life as a clinician and scholar at the height of the apartheid regime’s structural, material and cultural oppression of south african people of colour. social services such as health care and education showed profound, deliberate inequalities across race, while state-sponsored terror, mass forced removals and the everyday dehumanisation of legislated racial hatred caused incalculable, generational harms. in these darkest of times, swartz quickly became a clarion voice as a researcher and advocate, bringing to light the devastating mental health consequences of the regime’s actions as a member of the pioneering organisation for appropriate social services in south africa (oasssa). this work proved to be the foundation for a decades-long, ground-breaking contribution to the field of cross-cultural psychiatry globally, and swartz’s establishment as an international authority in the field of culture and mental health. since then, swartz’s unstoppable intellectual curiosity has taken his scholarship into a remarkable range of areas, creating globally influential work as he goes. what ties these contributions together, besides scholarship of the highest calibre, is a tireless commitment to human rights and a steady determination to make heard the voices of the most marginal. it has, for us, been an immense privilege to be mentored by someone able to discern patterns and connections invisible to others, which may take one by surprise today, but become building blocks of broad new insights in the months and years to come. examining the course of a packed career, we might find swartz pioneering social science research methods to respond to the acquired immunodeficiency syndrome (aids) pandemic in africa, devising and driving large-scale research in public mental health across the global south, developing and advocating for disability-inclusive broadcast media policy, developing assessment instruments to facilitate social support for children and adults with disabilities, coordinating large-scale projects investigating access to health care for disabled people across the continent, training disability activists from 10 african countries in emancipatory research skills, critically examining issues of culture and equity in health sciences education, co-editing successive ground-breaking african texts in disability studies, and, at every stage, training and mentoring young academics from diverse backgrounds in research methods, authorship and academic publishing, among very much else. as an outspoken critic of epistemic injustice, a constant thrust of swartz’s work has been the validation and amplification of voices from the global south, upending colonial hegemonies across disciplines from disability studies, public health and psychiatry to philosophy, clinical psychology and medical humanities. a list of honours too numerous to mention includes the stals medal for psychology awarded by the south african academy of arts and sciences, the stellenbosch university chancellor’s award, the academy of sciences of south africa gold medal for science-for-society, election as member of the academy of sciences of south africa, inauguration as a fellow of the royal society of south africa, shortlisting for the national science and technology forum lifetime achievement award, a visiting professorship at harvard medical school, appointment as global advisor to the institute for culture and society (university of western sydney), and a seemingly endless list of invited keynote addresses at major academic gatherings and institutions around the globe. somehow, amid all of this, swartz has also found the time to fill the role of editor-in-chief of three journals, the african journal of disability, the south african journal of science, and the scandinavian journal of disability research. beyond all of these accolades, however, what contributions to this special issue describe is a role model not only in the domain of the intellectual, but also in the everyday philosophy of kindness. in an age where the need for applied scholarship and the moral imagination of the critical public intellectual has never been more urgent, the example set by swartz’s ethics and determination has been a beacon for many, placing the right to human flourishing at its centre. returning to the appropriately quirky and irreverent metaphor of holding a moonbeam in your hand, we recall that it is, in fact, a line from the musical the sound of music, telling of how the heroine maria’s free-spirited, creative and unpredictable nature meant that she couldn’t be contained or silenced by tradition and orthodoxy. similarly, and with humour always nearby, the breadth of swartz’s intellectual engagement defies disciplinary boundaries and the security of familiar territory, and all of this while seeming to have more fun than anyone else involved. ever-present in his work is the valuing of deep, inquiring understanding, bringing into relief dynamics and relationships which surprise our assumptions. the special issue consists of 21 articles. the contributions we briefly review in the balance of this editorial reflect research and advocacy work with weighty social impact in a host of fields, embodying the work of scholars, practitioners and activists who have had the good fortune to be taught, guided and very often entertained by prof. swartz. there is more than one reference to time spent at his large and always welcoming kitchen table, a place where countless academic luminaries from around the world have enjoyed rich hospitality and even richer conversation over decades. the fields of study and group of contributors gathered here are by no means exhaustive and represent just a sample of swartz’s scholarship, mentorship and influence. themes of gratitude, celebration and hope recur throughout, and we echo these sentiments deeply. rohleder (2025) considers the practice of research as one which often involves fostering relationships, and reflects on their relationship with prof. swartz, as a mentor, a supervisor, a co-researcher and a friend in the research area of disability and sexuality. the article foregrounds the importance of humanness in research. sinason (2025) adds how swartz takes an equal, two-way approach in working with these relationships. the following articles also showcase the humanness within swartz and the diverse relationships he held with everyone he encountered in the various roles he played. drawing on engagements held with swartz in his purple kitchen or in a coffee shop, marchetti-mercer (2025) narrates their introduction to disability studies as a clinical psychologist working with transnational families, while shabalala (2025) speaks to the supervision experience and scholarly development that took place around the same table. pretorius (2025) similarly shares swartz’s instrumental mentorship in their academic journey to excel in the field of psychosocial disability research. wiggett-barnard (2025) reflects on their work as a disability activist and managing director of the non-profit organisation changeability, and how swartz’s scholarship shaped and guided their strategies for addressing disability-related barriers. sunkel (2025) writes about the global mental health peer network’s work to develop leadership among those with lived experience of psychosocial disability. she links this to swartz’s work of demonstrating a deep commitment to meaningful and authentic inclusion of people with lived experiences of mental health difficulties in his teaching and learning at stellenbosch university. some contributions showcase how engagements with swartz often lead to landmark scholarly outputs. richards (2025) offers a creative piece on living with kidney disease. in this contribution, richards reflects on the influence and mentorship offered by swartz in converting their writing into an autoethnographic doctoral study, which opened many intellectual doors for them. under the guidance of swartz, duncan (2025) narrates their journey of supporting the development of an occupational therapy textbook titled transformation through occupation (duncan & watson 2004), an exercise which shows the benefits of inter-professional collaboration and transdisciplinary theorising. capri (2025) draws us close to how swartz’s work embodies an ethic of care which guides one through complex arguments, while gently steering you away from potential pitfalls. this is further shown in the following articles. mckinney (2025) reflects on the national mental health policy and strategic framework of south africa 2023 – 2030, as well as scholarly conversations held with swartz to highlight the prevailing challenges for persons with physical disabilities in accessing mental health services. on the same issue of mental health, gibson (2025) speaks about the silencing of young people’s voices in mental health as a historic issue in psychiatry and psychology. this is followed by trafford (2025), who reflects on factors that may contribute to the marginalisation of children with disabilities, and the impact on resource allocation and public investment. the reflection is linked to swartz’s extensive scholarship in disability studies, which has consistently been focused on fairness, social justice and the centring of disabled voices. using four projects co-led with swartz, mkabile (2025) provides a reflection on his influence in the field of intellectual disability in south africa and the broader global south, with a specific focus on issues of epistemic justice. keikelame (2025) adds to this by reflecting on the mentorship they received from swartz, and how it has been instrumental in shaping their own research approaches and fostering ongoing critical self-reflection in studying epilepsy treatment and epistemic injustice. kagee and tomlinson (2025) re-examine the illustrious career of professor swartz in the context of a neoliberal model of the university. they argue that swartz’s contributions to society exemplify the challenges, pitfalls and victories characteristic of a scientist who is committed to engaged scholarship and social justice. watermeyer (2025) describes how swartz’s intellectual curiosity and compassion offer a guiding example of engaged scholarship with marginalised groups, particularly citing his own experiences of being supported by swartz as he trained as a clinical psychologist with severe visual impairment. adding to this, douglas (2025) reflects on a pertinent question once posed to them by swartz: what is the role of a clinical psychologist in south africa? – a question which marked a pivotal shift. the article delves deeply into how this challenge shaped their journey, and how the same question continues to be applied, in an under-resourced and vastly different context from the seminar room in which it was first voiced. other contributions draw on work carried out collaboratively with swartz. chiliza et al. (2025) review the work carried out with swartz in the western cape to highlight the difficult yet pervasive challenges in providing adequate mental healthcare because of language barriers. honouring the roles played by swartz in both the equitable and the geohealthaccess studies, munthali et al. (2025) dedicate to him an article which explores the challenges experienced by older persons in accessing healthcare in malawi. their dedication expresses gratitude to swartz for influencing the growth of disability research. schneider and de palma (2025) highlight the importance of ensuring inclusion of people with psychosocial disability in national and global statistics, and describe the process of developing psychosocial functioning questions to make the inclusion of this group feasible. this article is also dedicated to swartz, showing how he emphasised the importance of disability measurement, and the support he offered the first author to pursue this as an area of research. references capri, c., 2025, ‘the institute of leslie swartz: an ethics of care story’, african journal of disability 14, a1684. https://doi.org/10.4102/ajod.v14i0.1684 chiliza, b., wambua, g.n., kilian, s., manda-taylor, l. & mkhize, v.v., 2025, ‘reimagining language access in mental healthcare through cultural integration in kwazulu-natal’, african journal of disability 14, a1685. https://doi.org/10.4102/ajod.v14i0.1685 douglas, g.k., 2025, ‘those most at risk are least likely to be counted’, african journal of disability 14, a1702. https://doi.org/10.4102/ajod.v14i0.1702 duncan, e.m., 2025, ‘reflections on transformation through occupation: an occupational therapy textbook co-edited by swartz’, african journal of disability 14, a1690. https://doi.org/10.4102/ajod.v14i0.1690 duncan, m. & watson, r., 2004, ‘transformation through occupation: towards a prototype’, in r. watson & l. swartz (eds), transformation through occupation, whurr publishers, london & philadelphia. gibson, k., 2025, ‘“adults know best”: the silencing of young people’s voices in mental health’, african journal of disability 14, a1692. https://doi.org/10.4102/ajod.v14i0.1692 kagee, a. & tomlinson, m., 2025, ‘what are universities for? professor leslie swartz’s career in the context of the neoliberal university’, african journal of disability 14, a1680. https://doi.org/10.4102/ajod.v14i0.1680 keikelame, m.j., 2025, ‘“navigating the fog”: a reflection on epistemic injustice in epilepsy treatment and care’, african journal of disability 14, a1698. https://doi.org/10.4102/ajod.v14i0.1698 marchetti-mercer, m.c., 2025, ‘invisible barriers: examining the role of disability in transnational families’, african journal of disability 14, a1679. https://doi.org/10.4102/ajod.v14i0.1679 mckinney, v.j., 2025, ‘exploring mental health support services for people with physical disabilities’, african journal of disability 14, a1687. https://doi.org/10.4102/ajod.v14i0.1687 mkabile, s., 2025, ‘intellectual disability: indigenous and western systems of care with professor leslie swartz’, african journal of disability 14, a1691. https://doi.org/10.4102/ajod.v14i0.1691 munthali, a., eide, a., braathen, s.h., mvula, p.m., maclachlan, m. & mannan, h., 2025, ‘exploring challenges experienced by older persons in accessing health services in malawi’, african journal of disability 14, a1712. https://doi.org/10.4102/ajod.v14i0.1712 pretorius, c., 2025, ‘beyond the seizures: addressing psychosocial disabilities in functional/dissociative seizures’, african journal of disability 14, a1682. https://doi.org/10.4102/ajod.v14i0.1682 richards, r., 2025, ‘three short stories of kidney disease in south africa’, african journal of disability 14, a1683. https://doi.org/10.4102/ajod.v14i0.1683 rohleder, p., 2025, ‘research as relationships: bringing our humanness into research’, african journal of disability 14, a1681. https://doi.org/10.4102/ajod.v14i0.1681 schneider, m. & de palma, e., 2025, ‘including people with psychosocial disability in statistics: self-report measures for surveys’, african journal of disability 14, a1686. https://doi.org/10.4102/ajod.v14i0.1686 shabalala, n., 2025, ‘supervision at the kitchen table: supervisory alliance and implications for scholar development’, african journal of disability 14, a1688. https://doi.org/10.4102/ajod.v14i0.1688 sinason, v., 2025, ‘thirty years of a proud link with prof. leslie swartz’, african journal of disability 14, a1696. https://doi.org/10.4102/ajod.v14i0.1696 sunkel, c., 2025, ‘a best practice of developing a global lived experience organisation’, african journal of disability 14, a1740. https://doi.org/10.4102/ajod.v14i0.1740 trafford, z., 2025, ‘disabled children’s childhood studies in south africa: challenging deficit-centric perceptions’, african journal of disability 14, a1693. https://doi.org/10.4102/ajod.v14i0.1693 watermeyer, b., 2025, ‘engaged scholarship, disability and the politics of the personal: mentorship by leslie swartz’, african journal of disability 14, a1820. https://doi.org/10.4102/ajod.v14i0.1820 wiggett-barnard, c., 2025, ‘integrating scholarship and practice: a journey in disability advocacy and community empowerment’, african journal of disability 14, a1677. https://doi.org/10.4102/ajod.v14i0.1677 abstract introduction methodology results conclusion acknowledgements references about the author(s) tawanda makuyana department of tourism research in economic environs and society (trees), faculty of economic and management sciences, north-west university, potchefstroom, south africa department of research and development, national council of and for persons with disabilities, johannesburg, south africa citation makuyana, t., 2022, ‘towards interventions on school dropouts for disabled learners amidst and post-covid-19 pandemic’, african journal of disability 11(0), a1009. https://doi.org/10.4102/ajod.v11i0.1009 original research towards interventions on school dropouts for disabled learners amidst and post-covid-19 pandemic tawanda makuyana received: 18 jan. 2022; accepted: 18 apr. 2022; published: 24 june 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite objective arguments for inclusive education, there is a dearth of mechanisms to reduce dropouts amongst disabled learners in the extant literature. thus, this article is one of the outputs of a study, which was conducted after a consistent observation of dwindling numbers of disabled learners who succeed in basic education in south africa. of late, the dropout rate increased because of adherence to lock down regulations amidst the coronavirus disease 2019 (covid-19) pandemic. this triggered the need for research on co-creating interventions to mitigate the rate of dropouts amongst disabled learners. objective: the article explores underlying obstacles that induce school dropouts for disabled learners amidst and post-covid-19 and postulates interventions accordingly. methods: descriptive-narrative research upheld reality as emerging from empirical experiences of parents and guardians of disabled children, heads of primary and secondary schools, social workers, the department of social development and basic education, and provincial associations for disabled persons that focus on children. lived experience-based opinions were obtained from provinces with different economic growth, namely, limpopo and gauteng. forty-one in-depth one-on-one interviews and two focus group discussions used google meet. the collected data were analysed using creswell’s qualitative data analysis framework (steps) and atlas.ti.8. results: the findings show a consistent pattern that the covid-19 pandemic exacerbated the parents and guardians’ fear of exposing and risking their learners to the health crisis. based on the parents and guardians’ narrative, mainstream school administrations discriminate and are unwilling to enrol disabled learners. furthermore, the narrative from the school leadership shows that teachers use exclusive teaching and learning methods for the enrolled disabled learners because of ignorance, misconception, misunderstanding, misinterpretation of disability, disability inclusion, and reasonable accommodation. conclusion: based on the finding, it is clear that dropouts amongst disabled learners can be alleviated by using a systematic multi-stakeholder local community-based intervention approach. this, therefore, implies that government authorities and agencies should incorporate disability into mainstream policies that guide planning, budgeting, staffing, and mobilisation of other resources. this would ideally enhance the provision of learning opportunities to disabled learners whilst supporting their diverse educational needs without dichotomies set by ‘ability and disability’, or normal and abnormal. in this manner, inclusive education can contribute to the educational success of disabled learners through developing sustainability and resilience amongst disabled learners. keywords: inclusive education; school dropout interventions; covid-19; underlying obstacles; dropout of disabled pupils. introduction inclusive education has been an issue of debate for more than 15 years in south africa. the current article relates to the study conducted by makuyana (2020) which focused on accessible human capital development because the primary aim is to enhance the educational success of disabled students. one can say that it is a theoretical concept with substantive challenges in application and management, to the extent that the extant literature reflects the complexities beyond being an ‘issue of debate’. nonetheless, funda (2020) understood inclusive education as the processes and procedures that continuously address and respond to the needs of diverse learners for improved active involvement in learning and communities’ environment. within this context, this article considers school dropout (‘withdrawal’ or ‘attrition’) as ‘leaving education without obtaining a minimal credential’ (funda 2020). the lowest qualification of south african individuals is the national senior certificate (nsc) or ‘matric’ (donohue & bornman 2014). in most cases, dropouts of non-disabled learners from grades 10 and 11 result in 50% of learners in a cohort reaching grade 12 (donohue & bornman,2014). research in this regard estimated the dropouts to be 750 000 in may 2021 for non-disabled learners only (https://zerodropout.co.za/). usually, there is a dearth of documentation for disabled learners, whilst non-disabled learners’ records are consistently documented in primary and secondary schools. the sustainability of inclusive education entails a systemic process concerned with addressing the present needs without compromising the ability of future generations’ educational and societal needs (host communities, vulnerable population groups such as disabled people), planet (environment and biodiversity), and profit-making (botha 2020; medina-garcía, doña-toledo, & higueras-rodríguez, 2020; turusida 2020). at the same time, inclusive education can enable learning outcomes that uphold the ability to adjust and recover from a societal, cultural, and social background that could have been prevented or mitigated with sustainable practices whilst perpetuating a decrease in the dropout of disabled learners (ostendorf 2020). however, there is limited attention to developing proficiencies that provide capacity and capabilities to all teachers in all subjects because of the intersectionality of disability and the need to include diversified learners in times of crisis (covid-19 included) (funda, 2020). nonetheless, the zero dropout campaign is an initiative of a non-profit organisation (civil society organisation) funded by dg murray trust since 2015 to develop a toolkit to prevent dropouts, which was first implemented in 2017 among south african individuals. the said campaign is towards giving attention to non-disabled learners only as it is silent on disabled cohorts, particularly in health-threatening situations (https://zerodropout.co.za/). in addition, there is a dearth of research on dropouts of disabled learners that has disaggregated the statistics by, for example, age, type of impairments, and gender before and amidst the covid-19 pandemic. on the one hand, the 2014-general household survey report stated that a total of 480 036 disabled learners out of 718 409 were out of school (statistics south africa 2014). this means approximately 66% were dropouts. on the other hand, the department of basic education (2016) estimated the number of disabled learners who were out of school to be 597 753 in 2015, thereby showing an increase of 117 717 dropouts amongst disabled learners between 2014 and 2015. this means that 83% of the south african disabled children are out of school. this implies that disabled learners scarcely succeed at par with their non-disabled cohort; for example, the department of basic education-nsc 2018 examination report showed that of the 624 733 learners who appeared in matric examination in 2018, only 3856 learners had special educational needs, that is, 0.6% of the total (mckenzie et al. 2020). another report by watermeyer et al. (2013) reflected figures, which are higher in poorer provinces of south africa; of those who do attend, most are still in separate, ‘special’ schools for disabled learners (https://static.pmg.org.za/170530report.pdf). the main setbacks are experienced when implementing inclusive education at the community and school levels. it is a challenge whenever interventions are suggested for an education system that is void of inclusive approaches at community-school levels (chataika et al. 2018). funda (2020) believed that unless all teachers, teacher-administrators and non-disabled learners understand disability, disabled learners will be marginalised and stigmatised in mainstream schools because of a lack of political will from the government and support from the school authorities. ndlovu (2020) shared a similar view although not exactly like funda (2020) because ndlovu (2020) did not raise political will in the narrative. consequentially, disabled cohorts are commonly perceived as a source of extra costs within mainstream learning systems (ostendorf 2020). on the one hand, parents at times contribute to dropouts because they remain overprotective of their vulnerable children regardless of the need to support them towards accessing education as a right (ostendorf 2020). on the other hand, such behaviour is traceable to the socialisation (cultural background) that fosters a need to educate the parents and guardians on disability and inclusion for greater inclusive education (ostendorf 2020). the author took cognisance of the findings mentioned here as not new but expressed differently by funda (2020), ostendorf (2020), and turusida (2020). they interventions that can nurture every child to exercise the right to education regardless of having an impairment. there is a shortage of literature on inclusive education, dropout amongst disabled learners, and opportunities to empower disabled learners for collaborative partnerships and participation in disability-inclusive community development. furthermore, there is a limited framework, implementation matrix, and plan to support inclusive education practices in socio-economic and health-turbulence times (monyane 2020). in addition, little is known on ways to manage fears of infection, fear of the unknown, and ignorance on how to handle disabled learners prevails among educators during covid-19 pandemic, leading to their reduced educational success (monyane 2020). however, there are teachers and community members who rely more on intuitive know-how as means to establish inclusion, cohesion, and integration for sustainable, inclusive community development and resilient education. nonetheless, the above-mentioned situation or observable reality remains unaddressed because of a dearth of consultative dialogues to continuously gather opinions of (1) the community members (formal and informal support structures and systems), (2) disability activists, and (3) experts-based and research-based opinions of educationists, academics, and the disability sector in south africa. this article attempts to explore the underlying obstacles that induce school dropouts for disabled learners amidst the covid-19 pandemic and in the aftermath of the said crisis. interestingly, these struggles and obstacles are similar for all families with disabled children in south africa (ostendorf 2020). therefore, this study can contribute to interventions that can alleviate dropouts for disabled learners within the education environment as an outcome of an applied research method presented in the next section. methodology following charmaz and thornberg (2020), this study used a qualitative research approach. interpretive and transformative research approaches enabled reality to emerge from the participants’ lived experiences as advised by creswell and poth (2018). the target population consisted of south african individuals. purposive-stratified sampling recruited participants from limpopo and gauteng provinces because of the differences in dominating socio-economic activities and urban-rural settings. gauteng is the most urbanised province, whilst limpopo is dominated by rural areas in south africa. the participants comprised (1) parents or guardians of disabled children because they have lived experiences as part of the immediate family structure and support their child’s participation in learning and education; (2) the school leadership (heads) because they are the education administrators at the school level; (3) social workers because they play a role in the well-being of vulnerable learners and their families in difficult times; while ensuring their safety, professional relationships and acting as guides and advocates; (4) provincial association of persons with disabilities (apds), who work closely with disabled children in the two provinces; (5) office responsible for disabled learners in the department of basic education custodians, policymakers and authorities in primary and secondary education; and (6) office responsible for disabled children in the department of social development because they are custodians and responsible for policies and authority on issues such as funding and resource support. the research used a stratified-purposive sampling strategy to recruit participants who fall into different strata/categories as mentioned here and know the participation of disabled children in primary and secondary education as advised by creswell and poth (2018). snowballing was used to recruit parents and guardians of disabled children in limpopo and gauteng provinces through the administrators of support groups. as a disability activist, the researcher has a work-based relationship with the disability sector – especially at the grassroots community level. the rest were recruited based on their officejob responsibilities whilst stationed in different organisations dealing with disabled learners’ participation in education. the data were collected using an in-depth key-informant interview guide and focus group discussion (fgd) as advised by alshenqeeti (2014). the fgds verified and validated the data from participants, while in-depth-key informant interviews enabled individuals to share perspectives. the participants were asked questions in an attempt to address the overall research question. participants were asked to: (1) describe or profile themselves and their learners; (2) describe their involvement and participation in the education of their disabled learners from enrolment, movement to and from school, learning, costs incurred for the child’s learning processes and cost of accessing education that is associated with the acquired impairment(s); (3) describe challenges or obstacles (causes of dropouts included) faced; and (4) describe ways to alleviate and improve disabled children’s participation in education. the tools were pilot tested by three external people, namely, the head of a research department of one of the gatekeepers within the disability sector of south africa, to check on political correctness and language used in the tools. an educator based in zimbabwe and a disabled person who lives in south africa conducted a peer review to check on the ability of the question to gather intended data as advised by creswell and poth (2018). data were collected after obtaining consent from participants using email and telephone calls because the research needed their lived experiences. out of the proposed 30 parents and guardians of disabled learners in each province, only 17 from limpopo province and 20 from gauteng province gave consent and participated in the study. in addition, the data collection reached the heads of only two primary schools and one secondary school in gauteng province. only one primary school head from limpopo gave consent and participated in the research. only three social workers from limpopo province and two social workers from gauteng province gave participated by providing their opinions. only one representative of associations of disabled children in the two above-mentioned provinces participated respectively. only one person from the department of basic education and the social development participated, respectively, thereby making the sample size to be n (50). the researcher emailed participants who had consented to participate in the research and scheduled an appointment for the interview conversations and fgds. the data collection used google meet to accommodate different impairmentscommunication and accessibility needs. all communication and discussions with all participants were conducted in the english language, which was their second language, and was comfortable to converse without an interpreter. all interviewees and the interviewer experienced no communication barrier. the data collection occurred between june and november 2021. interviews and fgds were opened by informed consent, which was read to the participants. consent to voluntary participation and recording on the virtual platform was obtained before the conversations. the collected data were analysed using creswell’s (2014) qualitative data analysis framework. the gathered data were transcribed into text verbatim (creswell 2014). data were cleaned by reading several times whilst uncovering insights into the participants’ thoughts using inductive and deductive coding (graebner, martin & roundy 2012). the author then organised and prepared a thematic analysis using a coding framework developed from the literature reviewed (theoretical framework) in this study (eisenhardt cited in gehman et al. 2018). miles and huberman (1994) advised the researcher to use descriptive coding by reading the transcribed data whilst assigning labels emerging from the gathered data, which attempted to answer this study’s research questions. the author used interpretive coding to fragment and reorganise data whilst identifying themes contextualised to the research and decontextualising the researcher’s experiences as advised by miles, huberman, and saldaña (2013). following charmaz (2014), the author then read the codes and underlying data to find how the codes (themes and constructs) were categorised based on either thematic or conceptual similarities. following saldaña’s (2015) advice, analytical memos were developed as the researcher’s ongoing reflections during the coding process. such reflection was on the pattern of themes and codes and their interrelations as bridging the distinctions between coding, analysis, and results. thus, saldaña (2015) regarded memos as intuition, hunches, and serendipitous occurrences related to disability-inclusive education. the coding process and analytical memorising enabled the emergence of patterns in the data and did not determine the codes (saldaña 2015). a computer-aid analytic tool-atlas.ti.8 enabled the data to be immersed for in-depth analysis. this article identifies and elaborates new concepts and ideas that can enable sustainability and resiliency in disabled learners as a result of an inclusive education environment, thereby contributing to reducing disabled learner dropouts. a detailed description of the roles of individuals and organisations is presented as an element of a community-centric education-implementation plan to reduce dropouts amongst disabled learners. the role of the researcher cannot be ignored throughout the narrative; hence, the discussion articulates it as follows. role of the researcher the researcher’s reflexivity was part of the study as a disability advocate. however, audio-recording alleviated researcher biases during data collection as advised by charmaz (2014). following charmaz and thornberg (2020) and creswell and poth (2018), each group’s consolidated feedback was circulated to ensure trustworthiness and rigour through ascertaining the inclusion of all the opinions raised by participants. coding fostered the anonymity of the participants from each forum, and the opinions that constituted the discussion were for this study only (creswell 2014). transcription was verbatim. however, the researcher’s influence during analysis and interpretation cannot be eliminated but mitigated by using computer-aided data analysis (atlas.ti.8) (creswell & poth 2018). the researcher asked the administrators to delete the questions and responses posted online as agreed between the participants and the data collector as advised by biriyai and victor (2014). the results are as follows. rigour and reliability the collected data foster rigour and reliability because the data collection process followed the grounded theory assertion furthered by charmaz and thornberg (2020). thus, charmaz and thornberg (2020) and charmaz and belgrave (2012) believed that a range between 10 and 30 in-depth interview participants’ opinions fosters data saturation level. moreover, saturation was reached by the fourth in-depth key-informant interview and the second fgd. the rest of the conversations verified and confirmed a trend pattern (gentles et al. 2019). at the same time, audio recordings of the interviews upheld the trustworthiness of the data as advised by alshenqeeti (2014). the outcome of the analysis is presented in the results section. ethical considerations ethical clearance was obtained from the north-west university through the emelten-rec. in addition, the authors underwent ethical training to research health and vulnerable groups. authorisation and consent were obtained from participants before data collection and audio-recording (reference number: nwu-00248-18-a2, 23 august 2018). results table 1 has the profile of the participants to have the contextual socio-economic background because it influences their views on school dropouts of disabled children. ninetyfive percent of the parents and guardians are females and 5% are males. overall, the study has 50 participants, and female participants dominated with 90% against 10% of male participants. ninety-two percent (92%) of the total number of parents and guardians are young single-black mothers aged between 25 and 40 years. however, 89% are dependent on south africa social service agency (sassa) grants. parents share similar narratives to parent number 03, who said: ‘… due to my mother’s passing last year, i am now staying alone. i have no option except to quit work to take care of thabiso (pseudonym), and the father is not present in his life because he claims that it is not his child because of the impairment…’ (a mother of one disabled child, aged 35, lives in limpopo).[in-depth interview which was conducted on the 3rd of july 2021]. table 1: profile of the participants. however, the assertions cannot be generalised because contrasting accounts amongst participants show the desire to be employed to have resources that enhance provision for disabled children. for example, parent number 10 said, ‘due to my child’s needs, sassa grants are not adequate, yet i am failing to get employment…’ (a mother of two disabled children, aged 39 lives in gauteng)[in-depth interview conducted on 27th of june 2021]. the majority of the parents and guardians are single parents who are active in the disabled child’s life. table 1 shows that different children at school going stage have acquired various impairments at birth. the parents’ narrative reflected that the impairments were diagnosed when the children were between 2 and 5 years. the impairments are classified into the following: psychological disorders (14%), cognitive and learning impairments (8%), hearing impairments (16%), vision impairments (22%), head injuries – brain impairment (2.7%), spinal cord impairments (22%) and mobility and physical impairments (16%). table 1 shows 12 participants in the age range of 35–55 years are neither parents nor guardians. of the 12 participants, 9 are married, 1 is divorced and 2 are single and 6 are black females, 3 black males, 1 south african indian and 2 white females. furthermore, of these 12 participants, 2 had diplomas, and 9 had degrees and a master’s degree. the participants’ lived experiences ranged from 10 to 30 years. the participants’ annual income is above 3000 rands. only 12 participants who were not in the parents and guardians stratum do not have children with impairments. the following section presents underlying obstacles that have contributed to the increase in dropouts of disabled learners. challenges or obstacles literature shows anecdotal statistics of dropouts amidst the covid-19 pandemic (fodo 2020; monyane 2020; unicef 2020). the given assertion concurs with accounts of five social workers, two apds, and the representative office that handles disability issues for children in the department of social development and basic education who participated in the study. participants mentioned here believe that an inconsistent record exists that does not show disaggregated data on disabled children in terms of age, race, type of disability experienced, and type of impairment. the participants’ opinions on inclusion in education include misconceptions, misunderstanding, and misinterpretation of disability. the account of all participants but parents and guardians concurred that covid-19 worsened the school attendance ratio amongst disabled children to the estimated percentage that is less than 10 as of the year 2021. all parents and guardians had a similar view of being afraid of losing their learners to the disease. on the one hand, parents and guardians disagreed with the two government officials that ‘… when schools were opened, learners were aided to learn using virtual platforms’ [in-depth interview conducted on the 3rd of october 2021]. on the other hand, the parents’ and guardians’ narrative reflected their inability to mobilise resources to support learning at home. the majority of parents and guardians’ focus is on looking for means to afford food and other assistive devices to enhance the learners’ dignified living. the results sum up key highlights that reflected challenges or obstacles that make the cohort more vulnerable to dropping out amidst the covid-19 pandemic as follows: parents withdraw their children from early child development and primary education because mainstream schools do not have resource support for disabled learners, whilst school teachers lack the capacity and understanding to handle disabled children. for example, a case study of parent number 05, an in-depth interview was conducted on 5th of august 2021: ‘teachers and non-disabled learners mock (using words like suffering from … afflicted … unfortunate …). these words perpetuate disabled learners to feel alienated and not normal, thereby making learners feel uncomfortable to learn with disabled learners.’ (parent of a disabled child, aged 37, who lives in limpopo) thereby, parents change schools and eventually pull out the child from school. parents are in a compromised situation that makes them enroll their children in mushrooming privately-owned special schools whose registration status is questionable. it is common that mainstream schools to reject their kids. staff at schools ill-treated disabled pupils. for example, a case study of parent number 01 from focus group discussion 01: ‘when i went and asked for my child to spend a weekend at home from the boarding/school residential facilities, i noticed wounds that the principal failed to explain as such seem to have been caused by unattended diapers. such schools have unqualified staff, dodge inspection from authorities until such cases are reported.’(focus group discussion was conducted on 15 august 2021) henceforth, fear, lack of trust, and parents’ insecurities contribute to dropouts. according to the parents and guardians’ account, rural areas have fewer mainstream schools that can reasonably accommodate disabled learners. a contrast emerges as private schools with all supportive online and physical learning systems are found in urban areas. the narrative of parents and guardians shows that they cannot afford the fees for their children to be enrolled in the urban special schools if one is not working for a salary above r150 000 per annum. heads/principals do not want to enroll the disabled learners at mainstream schools amidst this covid-19 pandemic because they do not have adequate resources to include disabled learners. head 001 said: ‘by having two separate policies for disabled and non-disabled learners, when staffing, we rarely think of considering the disabled learner in most cases. it rings a bell when we see a parent come with their child. that keeps us failing to build a system that systematically incorporates disability from the curriculum to practice.’ (head of primary school in limpopo interviewed on 01 august 2021). similar responses were given by two school heads from gauteng, who added that primary and secondary schools do not have a disability unit to advise the administration on disability inclusion. all heads of schools in both provinces concurred that not all special schools have grades that uphold curriculum, and care centres are not suitable for every disabled learner without an official assessment. thereby, making parents and guardians pull out their children as they are alienated and marginalised. two government officials proudly highlighted the milestones in facilitating the development of separate policies for disabled learners and non-disabled learners in mainstream schools. a contrasting view from parents and guardians reflected such milestones as perpetuating, if not causing dilemmas in establishing and communicating the roles of stakeholders in inclusive educated because educators neither understand disability nor have the capacity to conceptualise inclusion within the education environmental setting interprets disability policy at the school level. social workers and heads of schools concurred that there is a misconception, misunderstanding, and misinterpretation of disability and inclusion among education researchers. the participants who were neither parents nor guardians in fgd 01 concurred that dropouts during the covid-19 pandemic were worsened by the lack of clarity on the disability policies, poor policy implementation of the said policies at the district, community, and school level, and lack of measurement and enforcement on inclusive education. implications and interventions the suggestions that were gathered from participants highlighted the need to have a clear stakeholder-role definition in inclusive education and their participation in the reduction of dropouts of disabled learners. this is illustrated in table 2. table 2: roles of stakeholders in inclusive education for the educational success of disabled children. based on the participants’ suggestions and deductions from the pattern of views, table 2 and figure 1 present the recommendations and the usage of a systematic multistakeholder local community-based intervention approach. this would enable continuous interactive relationships and meaningful engagement and dialogues amongst role-players to reduce dropouts whilst enabling the educational success of disabled learners. figure 1: role-players for the educational success of disabled learners. a total of 50 participants suggested that if the role mentioned here can be available and active, dropouts amongst disabled learners can be reduced and prevented (see table 2; figure 1). implementation of the roles of the role players based on figure 1, a national and provincial action plan should inform the development of a toolkit to be implemented at a local community-school level. a joint community-based action plan can embed the participation of every member of the community’s population groups in (1) problem identification, (2) co-designing of methods of investigating contextual obstacles and toward greater understanding of disability and participation of disabled children in education, and (3) co-designing roles and assigning roles in implementing interventions on dropouts, and education and raising awareness to all community members on ways to mitigate dropouts amongst disabled learners. based on table 2 and figure 1, the following 10 focal activities should be considered when implementing the intervention: (1) identifying; (2) acknowledging obstructs faced by disabled learners; (3) understanding disability and know-how when handling disabled learners; (4) inclusive education environment (policies, implementation frameworks that foster resource allocation and adequate capacity); (5) inclusive enrolment processes, procedures and learners’ retention systems within teaching and learning; (6) school attendance (virtual and physical) and observation of disabled learners’ learning behaviours and signs of disengaging; (7) parents and teacher collaborative partnership in facilitating reasonable accommodation in the classroom as also suggested by mudzingwa (2020) that family is the critical support system for resilience that aids to personal and internal resilience of a disabled person, by daly (2020) that inclusion is influenced by closeness to vital resources so that it builds resilient and well-being, as found by le roux (2018) that internal resilience makes disabled individuals strive to learn new social and surviving skills to sustain themselves against the adverse odds; (8) psychosocial support systems such as identifying and strengthening community network support-group just as proposed by mudzingwa (2020); (9) collaborative partnership development with clear role definitions and communication system; and (10) tracking and monitoring disabled learners who dropped out and those who completed school so that there is a continuous appropriate engagement during the roll-out of interventions. one should take note that often, disabled learners are told by societal structures, who they are, and what to believe about themselves. the conclusions derived from the findings are discussed in the next section. conclusion based on the given discussion, it is clear that a systematic multistakeholder local community-based intervention approach can contribute to an effort that can improve the educational success of disabled learners. therefore, the author concludes that dropouts amongst disabled learners can be reduced if obstacles are acknowledged and then contextualise the interventions within the socio-economic setting of communities where the schools are located, as summarised in figure 2. figure 2: summary of underlying obstacles that lead to dropping out of school and postulated interventions. the factors in brown colour are the leading causes that lead to obstacles in blue colours. the broken arrows show the indirect connection between the factors; however, the unbroken arrow directly influences identified moderating and intermediating factors. the factors in orange are the outcome of the interaction of the factors highlighted in this study. the cloud represents the postulated interventions that augment existing initiatives to reduce dropouts amongst disabled learners. hence, it is essential for the two responsible government authorities to plan, budget, bring more human capital resources and develop a national toolkit that guides stakeholders’ roles at provincial, district, and local community-based school levels. it is ideal when a disability-inclusive national action plan explicitly aims to prevent dropouts amongst disabled learners. therefore, the study attempts to contribute with an intervention that can facilitate reducing systemic ignorance, misconception, misunderstanding, and misinterpretation of disability and inclusion to the extent that guardians and parents initiate the dropouts. nonetheless, the study was limited to a qualitative approach that did not cover all provinces. hence, future studies are recommended to have a longitudinal approach whilst having a wider cross-sectional coverage within the borders of south africa. acknowledgements competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.m. is the sole author for this article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data are available upon request, it has not been put on public domain because the one that has been used is an element of the comprehensive data that will produce other articles. disclaimer the views and opinions in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of the author. references alshenqeeti, h., 2014, ‘interviewing as a data collection method: a critical review, american disability act (ada) 1990’, sciedu. press 3(1). https://doi.org/10.5430/elr.v3n1p39 botha, d., inclusive education south 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(2021). covid-19 and digital disruption in uk universities: afflictions and affordances of emergency online migration. higher education, 81(3), 623–641. abstract introduction methodology hierarchy of evidence and quality appraisal results discussion evolution of wheelchair design recommendations conclusion acknowledgements references about the author(s) terry j. ellapen school of biokinetics recreation and sport, physical activity sport and recreation (phasrec), north-west university, south africa henriëtte v. hammill school of biokinetics recreation and sport, physical activity sport and recreation (phasrec), north-west university, south africa mariette swanepoel school of biokinetics recreation and sport, physical activity sport and recreation (phasrec), north-west university, south africa gert l. strydom school of biokinetics recreation and sport, physical activity sport and recreation (phasrec), north-west university, south africa citation ellapen, t.j., hammill, h.v., swanepoel, m. & strydom, g.l., 2017, ‘the health benefits and constraints of exercise therapy for wheelchair users: a clinical commentary’, african journal of disability 6(0), a337. https://doi.org/10.4102/ajod.v6i0.337 original research the health benefits and constraints of exercise therapy for wheelchair users: a clinical commentary terry j. ellapen, henriëtte v. hammill, mariette swanepoel, gert l. strydom received: 31 oct. 2016; accepted: 22 june 2017; published: 07 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there are approximately 1 billion people living with chronic lower limb disability, many of whom are wheelchair users. objectives: review cardiometabolic and neuromuscular risk profiles of wheelchair users, benefits of regular exercise and the causes of neuromuscular upper limb and hip injuries that hinder regular adherence. method: literature published between 2013 and 2017 was adopted according to the standard practices for systematic reviews (prisma) through crossref metadata and google scholar searches. individual paper quality was evaluated using a modified downs and black appraisal scale. results: the literature search identified 16 600 papers which were excluded if they were non-english, non-peer-reviewed or published before 2013. finally, 25 papers were accepted, indicating that sedentary wheelchair users have poor cardiometabolic risk profiles (pcmrp) because of a lack of physical activity, limiting their quality of life, characterised by low self-esteem, social isolation and depression. their predominant mode of physical activity is through upper limb exercises, which not only improves their cardiometabolic risk profiles but also precipitates neuromuscular upper limb overuse injuries. the primary cause of upper limb injuries was attributed to poor wheelchair propulsion related to incorrect chair setup and poor cardiorespiratory fitness. conclusion: wheelchair users have a high body mass index, body fat percentage and serum lipid, cholesterol and blood glucose concentrations. empirical investigations illustrate exercise improves their pcmrp and cardiorespiratory fitness levels. although literature encourages regular exercise, none discusses the need to individualise chair setup in order to eliminate wheelchair pathomechanics and upper limb neuromuscular injuries. wheelchair users must be encouraged to consult a biokineticist or physiotherapist to review their wheelchair setup so as to eliminate possible incorrect manual wheelchair propulsion biomechanics and consequent overuse injuries. introduction many wheelchair users suffered injuries to the spinal cord, spinal nerves and cauda equina, and also underwent lower limb amputation (durstine et al. 2011). according to the international standards for neurological classification for spinal injury (schuld et al. 2014), the anatomical site of the injury determines the categorisation of the spinal cord injury. there are two major categories, namely, tetraplegia and paraplegia. tetraplegia is identified with neural damage to cervical vertebrae one to seven which produces impairments in both the upper and lower limbs as well as in the trunk, whereas paraplegia is identified with neural damage to the thoracic, lumbar or sacral vertebrae, precipitating trunk and lower limb dysfunction (schuld et al. 2014). lower limb amputation is the surgical or traumatic removal of a person’s lower limbs. the predisposing causes of lower limb amputation include (1) vascular and circulatory diseases precipitated through type 2 diabetes mellitus or peripheral vascular diseases, (2) trauma, (3) surgical removal of tumours and (4) congenital deformities (durstine et al. 2011). the several classifications of lower limb amputees are (1) symes, (2) transtibial disarticulation, (3) transfemoral disarticulation, (4) hip disarticulation, (5) unilateral amputation and (6) bilateral amputation (durstine et al. 2011). the exclusive use of a wheelchair profoundly affects a person’s musculoskeletal and cardiorespiratory functions (tweedy et al. 2016). these individuals often experience severe depression, which produces social withdrawal and sedentary lifestyles (jordaan, swanepoel & ellapen 2017). nooijen et al. (2016) reported a high association between a sedentary lifestyle and metabolic syndrome among wheelchair users, increasing their risk of premature death. although wheelchairs serve as their primary base of support, their source of mobility and as exercise equipment through which they can be physically active, wheelchairs nevertheless limit users’ involvement in physical activity and exercise. the predominant use of the smaller upper limb muscles during manual wheelchair propulsion means that these muscles fatigue easily and also expend less energy in comparison to the larger lower limb muscles (mcardle, katch & katch 1996). it is therefore a challenge for wheelchair users to maintain their body fat and body mass index (bmi) levels within normative values (grogery et al. 2014). elevated body fat and bmi levels increase their cardiometabolic profile, thereby increasing the onset of obesity, diabetes mellitus, hypertension and of various cardiovascular diseases, as well as of osteoporosis and osteoarthritis (la fountaine et al. 2015). grogery et al. (2014) reported an adverse association between prolonged wheelchair sitting and negative cardiometabolic risk profiles. furthermore, prolonged sitting in wheelchairs has been associated with an anterior pelvic tilt, tight hip flexors and lumbar lordosis, producing lower back pain (sprigle 2014). much empirical research conducted over the last 20 years has reported the effects of sedentary lifestyles of wheelchair users as well as the benefits for those who engage in an active lifestyle (de groot et al. 2013; tanhoffer et al. 2014; west et al. 2014). the authors of this paper decided not only to review literature between 2013 and 2017 in order to report on the latest findings but also to include the eight review papers published between 2000 and 2013 (table 4) so as to reflect the empirical findings of research conducted over the last 20 years (crtyzer et al. 2013; da silva alves et al. 2013; grogery et al. 2014; lu et al. 2014; nightingale et al. 2017; oliveira et al. 2014; sprigle 2014; tweedy et al. 2016). previous literature indicates that the physically inactive lifestyle of wheelchair users decreases their basal metabolic rate, and increases their insulin resistance as well as their glucose sensitivity, thereby precipitating the onset of diabetes mellitus together with various other co-morbidities (grogery et al. 2014; tweedy et al. 2016; jordaan et al. 2017). kressler et al. (2014) and tanhoffer et al. (2014) have strongly recommended that wheelchair users engage in a physically active lifestyle in order to increase their energy expenditure, thereby decreasing body fat and bmi which will positively influence their cardiometabolic profile. van straaten, cloud and morrow (2014), kim et al. (2015) and others have reported that regular exercise and physical activity also diminish muscular and neuropathic pain, thereby improving quality of life. the objectives of this clinical commentary are to (1) review the cardiometabolic risk profile and cardiorespiratory fitness status of wheelchair users, (2) determine the benefits of regular exercise, (3) determine common neuromuscular injuries adversely influencing wheelchair users adhering to regular exercise therapy and (4) identify wheelchair propulsion pathomechanics as the primary culprit of upper limb overuse and hip injuries. previous literature encourages wheelchair users to engage in physical activity and exercise but they do not describe the initial challenges (such as muscle and neuromuscular pain and injuries) that users experience. the novelty of this commentary lies in the review of common neuromuscular injuries sustained by wheelchair users when they begin an exercise programme and which may prevent them from continuing with the programme. the identification of the cause of these upper limb overuse injuries among spinal cord injured (sci) wheelchair users is unique to this review. this is the first commentary to discuss the abnormal force-couple relationships of the shoulder and hip muscles because of poor wheelchair setup and propulsion pathomechanics. methodology the authors followed the standard practices for systematic reviews (prisma). the definitions were guided by the prisma checklist for participants, interventions, comparisons, outcomes and study designs (picos). the participants in this study were wheelchair users; the intervention was not necessarily a therapeutic intervention but is interpreted as an exposure, namely, the effect of exercise therapy on the well-being of wheelchair users. the outcomes of interest were (1) exercise therapy interventions for wheelchair users, (2) the effects of exercise therapy on wheelchair users’ health and (3) common overuse injuries of physically active wheelchair users. the exclusion criteria were (1) publications prior to 2013, (2) literature not related to the health and physical status of wheelchair users, (3) psychological therapeutic interventions, (4) non-english papers and (5) non-peer-reviewed papers. a literature search of peer-reviewed and professional journal publications was conducted in the following search engine: crossref metadata database, an academic meta-database which comprises the following search engines: pubmed, medline, science direct, ebscohost, cinahl and google scholar (figure 1). the keywords used in the literature search were wheelchair users, physiological limitations of wheelchair users, impact of exercise therapy on wheelchair users’ health and quality of life. the screening eligibility of papers was performed in the following three steps: (1) title screen, (2) abstract screen and (3) full-text screen. the papers were screened by t.j.e., h.vh. and m.s. figure 1: conceptualisation of the review process. hierarchy of evidence and quality appraisal the hierarchy of evidence and quality of appraisal tool were adapted from abdullah, mcdonald and jaberzadeh (2012) (table 1). all publications were filtered based on the appropriateness of their title and whether they met the inclusion criteria. the authors included all levels of evidence as long as the publications met the inclusion criteria because of the limited literature available. table 1: hierarchy of evidence. the quality of each paper was appraised using a modified downs and black appraisal scale, which examined the quality of randomised controlled trials and non-randomised papers (downs & black 1998) (table 2). the modified downs and black checklist was adopted as not all the items on the original checklist were related to this paper, as similarly cited in gorber et al. (2007) and in ellapen, paul, swanepoel and strydom (2017). the modified checklist comprised 15 questions with a maximum of 15 points. answers were given a score of either 0 or 1. the authors did not adopt the pedro scale because it primarily focuses on the appraisal of randomised control trials (pedro scale 1999). table 2: appraisal of the papers selected according to downs and black appraisal scale (n = 25). results the database searches identified 16 600 full-text articles. after stringent application of the exclusion criteria, 25 eligible papers were incorporated into this clinical commentary. the findings of the chronological review of literature, identifying the cardiometabolic risk profiles and benefits of exercise for wheelchair users with sci, and the review papers published between 2013 and 2017 are summarised in tables 3 and 4, respectively. table 3: chronological review of literature, identifying the cardiometabolic risk profiles and benefits of exercise for wheelchair users with spinal cord injuries (2013–2017) (n = 17). table 4: review papers of wheelchair users with spinal cord injuries (2013–2017) (n = 8). discussion the discussion will follow the order of (1) cardiometabolic risk profile, (2) benefits of regular exercise to wheelchair users and (3) common neuromuscular injuries from upper extremity exercises. cardiometabolic risk profile of wheelchair users wheelchair users often lead sedentary lifestyles and consequently have poor cardiometabolic profiles (high bmi, increased body fat percentage and abnormal lipid and glucose concentrations) (grogery et al. 2014; la fountaine et al. 2015; nooijen et al. 2016). many wheelchair users are classified as obese. normal to excessive eating coupled with the minimal levels or absence of regular physical activity of wheelchair users, increases their body fat and bmi, both of which are predictors of obesity (grogery et al. 2014). mcardle et al. (1996) and jordaan et al. (2017) reported that the sedentary lifestyle of wheelchair users decreases their basal metabolic rate and glucose sensitivity, as well as increases their insulin resistance, thereby precipitating the onset of diabetes mellitus and ultimately contributing to their poor cardiometabolic profile. their poor cardiometabolic profile increases the risk of various cardiovascular diseases and metabolic syndrome (durstine et al. 2011). furthermore, their cardiorespiratory capacity is markedly reduced in so far as their condition is often accompanied by atrophied or weak respiratory muscles (west et al. 2014). the lack of regular physical activity and exercise, which is one of the hallmarks of sedentary individuals, is attributed to reduced maximal oxygen consumption, thereby limiting one’s aerobic capacity. because of the relationship between the cardiovascular and respiratory systems, a reduced aerobic capacity adversely influences a person’s cardiorespiratory capacity (mcardle et al. 1996). wheelchair users might furthermore be depressed, experiencing low-esteem and becoming socially withdrawn (nightingale et al. 2017), which negatively impacts their willingness to exercise and probably contributes to an increased cardiometabolic risk profile. benefits of regular exercise the world health organization (who 2016) recommends regular exercise participation of low to moderate intensity, either of physical or recreational activities, at least three times per week for approximately 30 min a day. the exercise can be aerobic or resistance training or a combination of both. benefits from participation in regular exercise include: regular aerobic training, applying manual wheelchair propulsion, arm cranking, swimming and circuit training have proven to increase the cardiorespiratory fitness, upper extremity muscle strength and endurance of wheelchair users (kressler et al. 2014; torhaug et al. 2016; tweedy et al. 2016). wheelchair users who regularly exercise have higher cardiorespiratory fitness, better cardiometabolic profiles (decreased bmi, percentage of fat and lipids) and tend to frequently participate in daily activities such as personal grooming, cleaning their surrounding environments and wheelchair riding (tanhoffer et al. 2014). aerobic exercise increases maximal oxygen consumption, thereby improving cardiorespiratory status through the efficient transportation of oxygen and carbon dioxide through the cardiovascular system both to and from the exercising muscles. further aerobic exercises help to decrease high blood glucose, body fat and bmi levels, which improves a person’s cardiometabolic profile (mcardle et al. 1996; van der scheer et al. 2015). kressler et al. (2014) and zolot and rosenberg (2016) reported that regular circuit training improves vo2peak, power output and muscle strength. circuit training utilises the short-term energy system that predominantly stimulates fast oxidative glycolytic fibres, increasing muscle strength and endurance (mcardle et al. 1996). increased muscle strength and endurance improve wheelchair user’s daily living activities and quality of life (tanhoffer et al. 2014). west et al. (2014) reported that regular inspiratory and aerobic exercise elicits improvements in respiratory functioning. this enhanced cardiorespiratory adaptation can be useful in order to prolong upper extremity aerobic training, which in turn will increase caloric energy expenditure and reduce their body fat percentage. regular exercise reduces depression and improves quality of life among these individuals (tweedy et al. 2016; zolot & rosenberg 2016). da silva alves et al. (2013) and van straaten et al. (2014) reported that regular exercise reduces spinal cord injury inflammation and neuropathic pain. common neuromuscular injuries affecting regular exercising of spinal cord injured individuals the who reported that 15.6% of the world’s population (approximately 1 billion people) are living with chronic disability and spend a considerable amount of time in wheelchairs (kate 2015; who 2016). most of these people are sedentary but a small portion of wheelchair users forgo a sedentary lifestyle and are instead physically active, using their wheelchairs as exercise apparatus. certain challenges, such as upper limb overuse injuries, inhibit these individuals from pursuing physical activity through wheelchair mobility. these upper limb overuse injuries pose further limitations on their already restricted lifestyle (thompson et al. 2015). the following discussion will entail what the pathomechanics are of common overuse upper extremity injuries among wheelchair users. pathomechanics of common overuse upper extremity injuries among wheelchair users the most common overuse injuries include shoulder impingement, rotator cuff tendinitis, biceps tendinitis, lateral epicondylitis, ulnar neuropathy, de quervain’s tenosynovitis and carpal tunnel syndrome (apple, cody & allen 2004). will et al. (2015) reported that poor biomechanics adopted in propelling wheelchairs is the primary cause of these overuse injuries. van der scheer et al. (2015) reported that poor fitness conditioning status among wheelchair users precipitates poor wheelchair propulsion biomechanics, which in turn leads to upper limb overuse injuries. manual wheelchair propulsion is categorised by the contact and recovery phases. contact phase occurs when mechanical power is delivered to the wheelchair through hand contact with the rim of the wheel (slowik et al. 2016). during the recovery phase, the hand is repositioned in preparation for the next cycle. during the subsequent contact phase, the hand is constrained to the arc of the rim of the wheel. contact phase hand patterns include distinct hand pattern types, which are based on the shape of the projection onto the rim arc and can be grouped into the following patterns: single loop, double loop and semi-circular loop (slowik et al. 2016). qi et al. (2014) reported that the selection of hand pattern influences the onset of upper extremity pain and injury. sprigle (2014) and will et al. (2015) stated that the key aspects of poor biomechanical posture among wheelchair users who manually propel their wheelchairs are: forward leaning and dropped or drooping shoulders. an anterior frontal plane analysis of the aforementioned pathomechanics indicates that a dropped or angulated shoulder girdle posture is associated with various shoulder pathologies (figure 2). from this image of poor shoulder girdle posture, it is postulated that these individuals are experiencing the phenomenon known as the ‘ineffective static passive locking mechanism of the glenohumeral joint’. mansfield and neumann (2015) describe the ineffective static locking mechanism as occurring because of scapular depression and downward rotation because of the laxed superior glenohumeral capsule and eccentrically lengthened trapezius and rhomboid muscles. this creates an abnormal force-couple relationship between the lengthened trapezius and the shortened pectoralis minor in the frontal plane (mansfield & neumann 2015). the shortened pectoralis minor muscles also produce a sunken chest and kyphosis. in the sagittal plane, the rounded shoulder suggests pectoralis minor and serratus anterior contractures as well as lengthened rhomboids. furthermore, the humeral head is depressed and internally rotated indicating subscapularis contracture (mansfield & neumann 2015). the ineffective static locking mechanism decreases the impingement interval space between the humeral head and the coracoamical arch and this reduced impingement interval spacing produces compression of the sub-acrominal bursa, supraspinatus and biceps brachii (mansfield & neumann 2015). the aforementioned biomechanical cascade of events explains the pathomechanics of shoulder impingement, sub-acrominal bursitis, rotator cuff injury (supraspinatus tear) and biceps tendinopathy (mansfield & neumann 2015). it is recommended that symmetrical strengthening of the trapezius, rhomboid, teres minor and infraspinatus muscles and stretching of the subscapularis, pectoralis minor and serratus anterior be undertaken in order to restore correct shoulder girdle posture, increasing the impingement interval space, thereby alleviating soft tissue sub-coracoamical arch compression. sprigle (2014) recommended that the seat width, seat depth, seat height, footrest length, armrest height, backrest height and backrest upholstery of the wheelchair be ergonomically adjusted so as to meet the individual’s needs and prevent poor biomechanical posture and overuse injuries. figure 2: frontal plane analysis identifying dropped shoulders. sagittal plane analysis identifies an anterior pelvic tilt with increased hip flexor tightness and lumbar lordosis (sprigle 2014) (figure 3). an anterior tilted pelvis is also known as short-arc pelvis-on-femur flexion and is associated with short tight hip flexors (iliopsoas and rectus femoris) and elongated stretched gluteal muscles (mansfield & neumann 2015). this creates an abnormal force-couple asymmetrical relationship between the hip flexors and extensors that leads to lower back pain (mansfield & neumann 2015). furthermore, tight hip flexors are associated with lumbar lordosis which is characterised by hyperextension of the lumbar vertebrae, accompanied by tight short erector spinae and stretched elongated rectus abdominis muscles and lower back pain (mansfield & neumann 2015). figure 3: sagittal plane analysis identifying poor posture. evolution of wheelchair design in an attempt to reduce wheelchair propulsion pathomechanics, scientists and engineers have redesigned the appearance and functionality of wheelchairs. sports wheelchairs have undergone drastic and revolutionary design modifications in order to enhance sports performance and improve adherence to physical activity programmes. these ergonomic modifications improve the biomechanics of the user, which in turn curtails the incidence of upper limb overuse injuries (sindall et al. 2013). modern tennis wheelchairs have sharply slanted back wheels so that the player is able to change direction easily (sindall et al. 2013). the seat height of the wheelchairs for basketball-forwards has been raised, while the guards’ wheelchairs have an inclined seat so as to facilitate improved wheelchair propulsion biomechanics (sindall et al. 2013). although sports wheelchairs are used for relatively short or temporary durations in the course of a wheelchair user’s day, it is nevertheless important to acknowledge the progress that has been made in wheelchair design and functionality. these revolutionary wheelchair design modifications have been embraced by scientists and engineers who are redesigning the normal manual wheelchairs that are utilised for a longer duration by incorporating similar features to those which have been brought to sports wheelchairs (cloud et al. 2017). cloud et al. (2017) have redesigned the seat angle of normal manual wheelchairs and have thereby significantly reduced the anterior pelvic tilt and lumbar lordosis of potential users. smart and powered wheelchairs provide on-board navigation and electronic transmission in order to enable the user to adopt an independent lifestyle without much physical effort (leaman & hung 2015). the authors postulate that because of the limited need for physical activity in these wheelchairs, the sedentary nature of the user’s lifestyle will be further increased, which in turn may adversely affect their cardiometabolic profile. recommendations it is recommended that manual wheelchair users have their wheelchairs reviewed in order to ensure that the wheelchair setup is ergonomically designed to meet their individual needs. treatment and rehabilitation of the aforementioned overuse injuries pose a significant challenge because these individuals are primarily reliant on the upper limbs for weight-bearing activities and for mobility. it is further recommended that before starting an exercise programme, all wheelchair users should first receive clinical clearance from their medical practitioner regarding their participatory readiness. they must thereafter consult a biokineticist or a physiotherapist who will conduct a critical review of their wheelchair propulsion biomechanics in an attempt to prevent injuries. the biokineticist or physiotherapist should also prescribe an individualised therapeutic exercise programme. conclusion wheelchair users have poor cardiometabolic risk profiles, low self-esteem and are at risk for socially withdrawn lives. those who regularly exercise enjoy improved cardiorespiratory fitness and reduced cardiometabolic risk as well as reduced levels of depression and a consequently enhanced quality of life. unfortunately, many wheelchair users who wish to be physically active are further restricted by upper limb overuse injuries. the primary cause of these injuries is wheelchair propulsion pathomechanics as a result of incorrect chair setup and limited cardiorespiratory fitness. it is therefore recommended that wheelchair users consult a biokineticist or physiotherapist before engaging in an exercise regime, so as to alleviate poor wheelchair propulsion biomechanics which may predispose them to overuse injuries. medical practitioners, as well as the family and friends of wheelchair users, must encourage them to adhere to regular aerobic, muscle strength, and flexibility exercises in order to improve their quality of life. acknowledgements the authors would like to thank phasrec for their guidance and encouragement. competing interests the authors declare that they have no financial or personal relationship that may have inappropriately influenced the writing of this article. authors’ contributions each author made a contribution to the drafting of this article. t.j.e. was the project leader. t.j.e., h.v.h., m.s. and g.l.s. made conceptual 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‘repetition bases training for efficient propulsion in new manual wheel chair users’, journal of physical medicine and rehabilitation in disabilities 1(001), 1–9. wong, s., van middendorp, j., belci, m., van nes, i., roels, e., smith, e. et al., 2015, ‘knowledge, attitudes and practise of medical staff towards obesity management in patients with spinal cord injuries: an international survey for four western european countries’, spinal cord 53, 24–31. world health organization (who), 2016, world report on disability, world health organization, geneva. zolot, j. & rosenberg, k., 2016, ‘wheelchair bound patients who exercise can prevent further disabilities’, american journal of nursing 116(6), 69–70. article information author: leslie swartz1 affiliation: 1department of psychology, stellenbosch university, south africa correspondence to: leslie swartz postal address: private bag x1 matieland 7602, south africa dates: received: 04 aug. 2014 accepted: 18 aug. 2014 published: 19 sept. 2014 how to cite this article: swartz, l., 2014, ‘five challenges for disability-related research in sub-saharan africa’, african journal of disability 3(2), art. #149, 6 pages. http://dx.doi.org/10.4102/ ajod.v3i2.149 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. five challenges for disability-related research in sub-saharan africa in this original research... open access • abstract • introduction • experience • expertise • enumeration • evidence • expectations • concluding comments • acknowledgements    • competing interests • references abstract top ↑ disability research in contemporary sub-saharan africa is developing rapidly, and this is something to be celebrated. this article reviews some contemporary developments and suggests that there are five central, and interrelated, challenges for the field. these challenges – experience, expertise, enumeration, evidence, and expectations – go to the heart of thinking about disability research in sub-saharan africa. an optimistic but appropriately critical approach to addressing these issues is suggested. introduction top ↑ there is good reason to feel both proud and optimistic about disability-related research in sub-saharan africa. i shall name a few examples of successes. the establishment and continued vitality of afrinead (the african network of evidence to action on disability) is no small achievement. afrinead has hosted a number of conferences and meetings attended by a range of researchers, scholars, and disability activists from africa and further afield, with a special issue of the prestigious journal disability and rehabilitation devoted to afrinead work (mji et al. 2009, 2011). the african journal of disability (an afrinead project) is up and running, and has gained official status as a recognised journal by the south african department of higher education and training within three years of it being tentatively established. the southern africa federation on disability (safod) established and ran a research programme which had its challenges (not least of which was the untimely death of the late alexander phiri, the charismatic and hugely influential safod leader), but which produced research – some of which has been reported in the latter journal – and built research capacity amongst disability activists (swartz 2009; 2013). the disability studies programme at the university of cape town has recently celebrated 20 years of postgraduate training in the field. kwame nkrumah university of science and technology (knust) in ghana has a centre, cedres, devoted to disability research, which is a co-owner of the african journal of disability. the centre for disability and rehabilitation studies at stellenbosch university, the other owner of the journal, has been involved in a number of research initiatives in a range of african countries. there are many other centres devoted to disability issues in a number of african contexts. in this special issue of the journal there are, furthermore, examples of successful disability research projects, some of them large-scale and multi-country.there are important collaborations internationally. notable amongst these collaborations is the long-standing work sintef (stiftelsen for industriell og teknisk forskning) in norway has carried out with the disability movement in various sub-saharan countries. the reports on living conditions of disabled people in a number of african countries, all conducted together with sintef, are foundational to much of the research in the region. these reports can be downloaded from  http://www.sintef.no/home/technology-and-society/projects/projects-sintef-ts-2006/studies-on-living-conditions/. similarly, trinity college dublin has worked on a number of collaborative projects in the region: see, for example https://global-health.tcd.ie/research/projects/apodd.php and http://www.equitableproject.org/. the leonard cheshire disability and inclusive development centre ( http://www.ucl.ac.uk/lc-ccr), located at university college london, is playing an increasing role in collaborations in the region. there are many other examples. if disability research in southern africa is to have a global impact, these collaborations are crucial. the success and international visibility of the work many people are doing to develop disability research in our region was brought home to me recently when i was invited to give a talk at a prominent university in the usa, well known for its work on disability issues. before i gave the talk, i met a well-known disability scholar and activist, and one of the first things he said to me was, ‘how is it that your university and others around you are getting disability issues so right?’ i felt pleased that this person knew about what we are doing in africa, and more pleased that he was complimentary about our work: what emerged in our conversation was even more interesting. he was of the view that because of the constraints of an increasingly narrow, output-driven research environment in the united states of america (usa), it is becoming less and less possible for academics there to engage in deeply critical work which questions current hierarchies of knowledge and power. for this, it seems, he was looking to us – to african researchers working in contexts which i always think of as far more challenging than those in the usa. not least amongst these challenges is the obvious one of a lack of resources, research infrastructure, and an enabling research environment, to which we must add the deep poverty and social exclusion of most people on whose behalf we commonly claim to be doing research. i was reminded of the wisdom of jean and john comaroff (2011) who in their book, theory from the south or how euro-america is evolving towards africa, argue that scholars in africa have long been dealing with challenges which are relatively new to some of their counterparts in wealthier countries – poverty and gross inequality, migration and refugee issues, environmental challenges and disasters, corruption and violence – partly because of the cultural encapsulation of many scholars in wealthier countries. the comaroffs argue that because of this, and for other reasons, the days when scholars and researchers in the global south would be consumers and adapters of theory and expertise from the north are over: indeed, if the north wants to address its own emergent issues, the people to learn from may well be researchers embedded in global south contexts. all of this is exciting, but also challenging. we may not yet be at a stage where we can claim that disability research in sub-saharan africa has come of age, but it is probably fair to say that we are in a process of growing up and are starting to be seen as growing up. and with this increasing maturity and substantially increasing visibility comes a growing responsibility. it may currently still be the case that, because of the dearth of information about disability issues on our continent, funders, international agencies, journal editors and reviewers, may work harder than they otherwise would to support research from our region. this is absolutely as it should be: it is simply outrageous that most of what we know about disability issues across the board comes from wealthier countries, when by far the majority of disabled people in the world live in low and middle-income countries (world health organization [who] & world bank, 2011). even small steps to redress the knowledge gap should be supported, and capacity must be developed. as more and more becomes known, even in small areas in the disability field, it is right also to expect more from researchers. the central question here is how do disability researchers in our region retain the distinctive strengths which come from working in our contexts, whilst at the same time developing the quality and depth of our work, and its ability to contribute to changing people’s lives for the better? there have been successes in this regard, notably the recent book by brian watermeyer (2012), arguably the most sophisticated book available internationally on the psychology of disablism, and a book embedded in watermeyer’s experience in the disability field in south africa. but how do we do more? this is a large and a complex question, and not one than can be answered by a single author and in the confines of a single journal article. in order to begin to address the question in the remainder of this article i shall, therefore, briefly consider five interrelated challenges which i have encountered in my own attempts to develop disability research and disability research capacity in our region. for ease of presentation, i call five linked key challenges, the five es: experience, expertise, enumeration, evidence, and expectations. i shall discuss each briefly. experience top ↑ an important contribution of both the social model of disability (swain et al. 2013) and of feminist disability studies (garland-thomson 2005) to how disability studies are thought of as a research discipline, is the placing of insider experience at the centre of how we understand and think about disability issues. within previous models of disability – most prominently, that which is usually termed the medical model – non-disabled professionals were seen to have the expertise in the field of disability. professional expertise and research was thought to be what was needed in order to understand disability best. this is no longer the case. first person accounts of experiences of disability and social exclusion are now common and thought important for any full understanding of disability (couser 2009; 2012). there are good examples of the use of insider accounts in scholarship in our region (for example human rights media centre 2011; moolman 2010), and scholarship discussing such accounts, amongst others, as discursive forms (lipenga 2014). these experiential insider accounts are important in expanding what we know about disability, and also in changing the rules how we come to know about disability. for too long, such accounts were dismissed, and continue to be dismissed, as ‘mere anecdote[s]’, but there are important lessons to be learned from those actual stories told by disabled people (swartz et al. 2012). for the purposes of this article, there are, however, three major potential problems with relying too heavily on such accounts.firstly, there is a problem with the assumption that insider knowledge is always representative of the views of all people of a certain group. to assume that the stories of six blind people in south africa will, for example, tell the whole story of all blind people in south africa is absurd. clearly, we need methods which provide the valuable depth of these insider experiential accounts, but we also need methods which can provide some breadth on the basis of which we can generalise. a second problem with over-valuing insider accounts is that such accounts may be incorrectly assumed simply to reflect the ‘truth’ about those whose accounts are portrayed. the reality is that every story anybody tells is profoundly affected by conventions, forms and tropes of stories: in life-writing about disability many stories are, for example, written according to the formula of portraying the disabled person as initially despairing and excluded, and then triumphing over adversity (couser 2009; swartz 2010). as the south african disability scholar richards (2008) has noted, even in first-person or autoethnographic accounts, the ‘i’ doing the writing is not the same ‘i’ who had the experiences, even if they are ostensibly the same person. every person reflecting on experience will filter this experience through a series of lenses, some of them conscious and some less conscious. in summary, then, research using experience is useful and important but not sufficient to tell us all we need to know about disability. a third, and especially tricky, problem relates to how we value insider accounts concerns on what we make of individual people’s views on quality of inclusion and services they have received, and the need for services in the future. it is completely appropriate, and essential, to take personal stories into account when considering improving inclusion and participation and developing services. such detailed accounts can provide much needed texture in how we think about inclusion and services (mgwili & watermeyer 2006). but there may be a bias in what gets published to favouring stories which are particularly interesting: few people wish to read stories which are boring and every day. hence, stories which make recommendations about inclusion and services may be stories which display particularly good or bad, or unusual circumstances. these stories have their own importance and validity but if taken on their own may lead to bias on how we respond to inclusion and service challenges. therefore, accounts of what some term the ‘supercrip’ variety (kama 2004) may emphasise the strengths of disabled people and may minimise the need for accommodations and services: accounts which emphasise exclusion and dependency (roulstone 2000) may fail to take adequate account of how services may be changing in a positive direction. this question of the knowledge basis on which to advocate for better inclusion and improved services relates also to the question of expertise. expertise top ↑ it is a fact, and one which is difficult to accept because it is so unjust, that historically disabled people have been excluded from opportunities to develop expertise in research, and in a range of other areas. there are prejudices about what kind of work and thinking disabled people can do prejudices which persist in africa (wolffe, ajuwon & kelly 2013): it is not by chance, for example, that the job of a switchboard operator is one which is still associated with blindness in some people’s minds. this exclusion from development, education, training and work must be resisted and questioned, and it is incumbent on all disability researchers to avoid demeaning prejudices and to look for skills and expertise which may be hidden.in my own work of training disability activists in basic research skills, i was forced to confront my own prejudices, of which i was unaware. one of the exercises we did as part of research training was community mapping, and i assumed that there would be particular challenges with this exercise for blind trainees. it was indeed essential to adapt the exercise to take account of visual impairment, but as a person who does not have a visual impairment, i learned that the trainees who were blind had an excellent understanding of the topography and geography of their home cities. they pointed out that if, as a blind person, one wants to survive life in an african city, one has to know and remember, for example, where vehicles drive on pavements, and where there are potholes and other dangerous obstacles in the road (swartz 2009; 2010). in fact, blind people may, for reasons of survival, have a better recollection of the topography of their environments. this was a skill and expertise i had not been aware of, but which became obvious through a process which allowed people whom i had underestimated to inform me and others of strengths we did not know they had. as part of the same training experience, i came to know one trainee who had a 10th grade education. this trainee had been excluded from education partly because of poverty and partly because of disability, and therefore had a low level of functional literacy. this person had been chosen by a national disabled people’s organisation (dpo) to be part of the training and was part of a group in which some fellow trainees had master’s degrees. if i had had the opportunity to select trainees for the course, i would probably not have selected this trainee because of his poor educational background. as things turned out, this highly intelligent trainee proved one of the most diligent in the group. he had an excellent understanding of research principles, and i am confident that this understanding was more sophisticated than some fellow trainees with postgraduate qualifications. through this i learned that i would have been wrong to equate expertise with formal qualifications. i had understood that disabled people are commonly excluded from education but until i had this experience, i had not fully thought through the implications of this in our context: in particular who may have the most to offer in terms of research-mindedness. i have now no doubt in my mind that in future i would choose a research partnership with this ‘uneducated’ trainee long before i would wish to collaborate with some highly qualified researchers. having said this, the expertise backlog experienced by this trainee is substantial. the trainee’s level of literacy is such that i very much doubt that without substantial and intensive help he will be able to write a research report unaided in the foreseeable future. i am not an expert on critical periods in development for the establishment of literacy and other skills (kang, sarro & sanes 2014; lederberg, schick & spencer 2013), but i am aware that an enormous amount of work would be needed for this trainee to have a chance of becoming an independent writer in the research field. i wish this was not true, given his obvious intelligence, commitment, and research-mindedness, but the expertise (as opposed to intelligence and potential) is simply not there: exclusion from education had serious consequences in terms of expertise. to deny this is to collude in a rose-coloured vision in which exclusion and oppression are seen not to matter. they do matter, and they do have consequences, even if these are consequences we wish were not there. at the other end of the spectrum, and as is appropriate, the expertise of formally well qualified researchers to understand disability issues has also been questioned. winston churchill famously said of scientists that they should be ‘on tap’ and not ‘on top’: they should use their expertise for the good of society, but they should not be the ones setting the agenda in terms of the research which is needed (butler 2000). this ‘on tap/on top’ distinction has been used in a number of publications on disability research, and was used as part of the disability knowledge and resources process of scoping disability issues in southern africa (albert & harrison 2005). it is an important ideal that disabled people should themselves be setting the agenda: and the best scenario is that disabled people themselves have all the expertise both to set the research agenda and to do the research themselves. with increasing access to education and training, this is not unrealistic, but currently the situation remains that those on whose behalf much research is carried out and those doing the research are different people. many apparently simple questions about disability – including, for example, simple ‘how many’ questions about the number of disabled people needing a particular service – involve a reasonably high level of research expertise to address in a meaningful way. questions need to be asked in particular, answerable ways, and in this regard there is expertise not only in how to conduct and interpret research, but in how to work with researchers to develop such questions which also address priority needs of disabled people. it is important to recognise that not everybody has the same expertise. activists are often not trained in research, and many researchers are not good activists. it is a mistake to equate excellent skills in one area with skills in another. as shakespeare (2013) noted, a confusion between research expertise and activist skills had negative effects on disability research in the united kingdom: this confusion can have even greater negative effects in a context within which there are huge educational backlogs. an atmosphere of mutual respect in designing and working on research is essential, and it is not a sign of respect to pretend that everybody has the same skills. in summary, in the dialogues between researchers and disabled people there is still work to be performed in terms of communicating what constitutes research expertise: and this is an issue for the counting of disabled people in research studies. enumeration top ↑ i have been at many meetings where participants berated researchers for not having a single definition of disability: i have observed this as a failure by researchers. it has, however, for a long time been known that different ways of measurement may be used to answer very different sorts of questions (jette 1994). if, for example, we are interested to know about hate crimes perpetrated against people who are viewed as disabled (sherry 2012), then we need to know about, and to count, people who are perceived by others as disabled. this may be a different figure from people who would self-identify as disabled, and would differ from a count of people who experience certain activity limitations. a key distinction here is between disability as an identity on the one hand, and people experiencing difficulties in doing various activities on the other. it would be likely that people who call themselves disabled would be a much smaller group than those who would say that they have difficulties in certain areas of life, such as mobility, self-care, and social participation.the washington group on disability statistics (wg) has carried out and continues to do important work showing that for census and much large-scale research purposes a much broader definition of disability is needed than census formats asked in the past: for example to ask people, ‘are you disabled?’ (madans, loeb, & altman 2011). the wg advocates measures that are valid and provide accurate estimates of difficulties people have in doing a range of activities. these measures are for use in censuses and population based surveys. the questions developed by the wg enquire about functional or activity limitations rather than about ‘disability’ or being ‘disabled’. measures of activity limitations facilitate counting all people who have difficulties, such as walking, seeing, hearing, remembering, self-care and communicating, and who may or may not self-identify as being disabled. disability as an identity would require a separate measure. asking questions like, ‘do you have a disability?’ or, ‘are you disabled?’ do not clearly count either functional limitations or identity and are therefore relatively useless in yielding data that is difficult to interpret (schneider 2009; schneider et al. 2009). this useful progress does, however, not come without its own challenges. for example, a recent study on disability and poverty in south africa used the wg method to ascertain disability status (graham et al. 2014). included in the sample were elderly people who may be experiencing impairments as a consequence of ageing: therefore some of what was found in terms of the wg method may be a reflection of impairment because of ageing. the authors present data to show that disabled people are more likely than non-disabled people to use public health services, although this may also be a function of age. no other data is presented in this document regarding access to health care, but the authors conclude: ‘the data demonstrated a need for continued efforts to ensure that health services are more accessible for people with disabilities’ graham et al. (2014:2). the authors may have collected data in this regard, but the data is not presented in the document, so it is difficult for any reader to see the basis on which the authors come to this conclusion. the authors show a higher level of health complaints in people they define as disabled as opposed to those they define as not disabled, but they do not show data which deals with access to services: in fact, they show that disabled people have accessed services at a higher rate than non-disabled people. in the presentation of these findings and conclusions we can see the apparent conflation of two things, namely health status, and access to health care. in collecting data on disability, it is important to be exact on what is being measured, and not to conflate one construct with another. evidence top ↑ the above discussion about counting raises broader questions about what constitutes evidence. afrinead is the label for the african network for evidence to action on disability, but what is this evidence, and who judges its quality? within mainstream epidemiology – the study of health in populations, and the study of attempts to improve population health – there is a clear hierarchy of evidence, from the anecdote of the single case report at the bottom of the hierarchy, to the evidence generated from a carefully controlled experimental process known as the randomised controlled trial. in this tradition, the best way to know whether something works to change people’s lives is to be able to demonstrate that it indeed is the case, and is generally better than other methods. the field of epidemiology is vast and complex, and a discussion thereof is beyond the scope of this article, but it is important to mention that rigorous epidemiological methods have been applied surprisingly rarely in the context of disability-related research in sub-saharan africa. this situation needs attention, and more expertise in epidemiological methods is needed.this said, it is important to note and understand that there is a politics of evidence. we need to be able to think about what is defined as adequate evidence and who defines the parameters of what constitutes evidence. the definition of the terrain of evidence is in itself an act of power, and issues of power and exclusion of who is claimed to have knowledge and who is not, are at the heart of debates about disability research worldwide. we need to engage with questions on what to make of and how to use, where appropriate, evidence which is seen as characteristically african and not formulated within the dominant international research paradigms (owusu-ansah & mji 2013). the debates about evidence and the politics of evidence are by no means settled (denzin 2009; ford & maher 2013), but the key issue is that the evidentiary base for every claim made in disability research in sub-saharan africa (as elsewhere) needs to be explored, before findings and conclusions are accepted. a key principle of research is, furthermore, that research is evaluated not on the basis of who has performed the study or on whether the findings are similar to those found in other studies, but on the basis of the appropriateness of the methods used, and on whether conclusions drawn are indeed based on the evidence collected. we may agree with the conclusions many researchers draw from their work, but the quality of their work rests on whether those conclusions may be appropriately drawn from the methods and data they have used. in this regard, researchers who change their minds when faced with new evidence which undermines their earlier conclusions, can be regarded as good rather than bad researchers. in very hierarchical social and academic contexts, as occur in our region, it is especially important to be vigilant regarding this issue. in some traditions – often in the practice more than in the theory – things are accepted as more likely to be true and correct because an elder or a leader says so. in the context of research, the quality of evidence depends not on who is providing the evidence but on the quality of the research work. an undergraduate student may well provide a better way of addressing a research problem than a revered senior professor. in this aspect, empirical research traditions have a degree of common cause with disability activists: good researchers are concerned not with traditional status, but with the best possible evidence. disability activists, at best, are also sceptical of traditional status and are concerned with what makes most sense to improve the lives of disabled people. expectations top ↑ it is possible to expect both too much and too little from research and researchers.on the one hand, it is possible to argue that knowledge is dangerous or useless, as can be seen from the activities of boko haram in nigeria. even the president of the republic of south africa has repeatedly criticised what he terms ‘clever blacks’, implying that they are not authentic africans (city press 2012). there are good reasons why some disability activists may have low expectations of research and what it can do: as noted at the beginning of this article, there are traditions of research in disability which have led to the exclusion and even abuse of disabled people (shakespeare 2013). it is probably true, though, that long-standing scepticism about disability research and what it can do has in recent years dissipated, with a more accepting attitude towards it. this more accepting attitude, however, is not without its own challenges. in introducing its research programme safod, for example, set the following intention: ‘safod aims to become a powerhouse of information and research on disability issues in the sadc region’ (see safod n.d.). this was a noble intention but, in retrospect, it would be a mistake not to recognise that it was overambitious. the hope and expectation that there will be a very dramatic change in the rate and quality of research outputs in the disability research field must be tempered with a realistic assessment of our situation. resources and expertise are not as freely available as many of us, including myself, would like. even where good research is carried out, the expectation that research will change the world also needs to be tempered with realism. much power of governments rests not on evidence-based policies and practices but on the extent to which policies and practices reflect the wishes and aspirations of various groups, ranging from voters to lobby groups to politicians to donors and to business interests. good research, especially in a context of compromised governance – which is a reality on much of our continent – will not on its own change the world. it needs to be accompanied by sophisticated and strategic activism. researchers can provide good data and findings to activists but it is up to activists to use their mobilisation skills to make the research make a difference. concluding comments top ↑ these are exciting times for disability research in our region. in exploring the five challenges of experience, expertise, enumeration, evidence and expectations i have suggested that we have much to celebrate but that there is also a long way ahead. at its heart, a research driven approach to disability takes nothing at face value, and it keeps questioning. the more people are involved in thinking about disability research – and the more questions asked – the better for the field and for the realisation of the rights of disabled people. acknowledgements top ↑ this work is based on research supported in part by the national research foundation (nrf) of south africa (grant specific unique reference number (uid) 85423). the grantholder (leslie swartz) acknowledges that opinions, findings and conclusions or recommendations expressed in any publication generated by the nrf supported research are that of the author(s), and that the nrf accepts no liability whatsoever in this regard.the author 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2012, towards a contextual psychology of disablism, routledge, london. wolffe, k.e., ajuwon, p.m. & kelly, s.m., 2013, ‘working with visual impairment in nigeria: a qualitative look at employment status’, journal of visual impairment & blindness, 107(6). world health organization (who) and world bank, 2011, world report on disability, who, geneva. ‘zuma scolds clever blacks’, city press, 03 november 2012, viewed 01 august 2014, from http://www.citypress.co.za/news/zuma-scolds-clever-blacks-20121103/ abstract introduction research methods and design findings and discussions conclusion acknowledgements references about the author(s) nilford hove department of education, faculty of inclusive education, university of south africa, pretoria, south africa nareadi t. phasha department of education, faculty of inclusive education, university of south africa, pretoria, south africa citation hove, n. & phasha, n.t., 2023, ‘inclusion of learners with learning disabilities in the vaal triangle mainstream classrooms’, african journal of disability 12(0), a1163. https://doi.org/10.4102/ajod.v12i0.1163 original research inclusion of learners with learning disabilities in the vaal triangle mainstream classrooms nilford hove, nareadi t. phasha received: 13 oct. 2022; accepted: 28 jan. 2023; published: 12 june 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: south africa adopted a policy on inclusive education in 2001 to ensure that all learners are accommodated and accepted in the classrooms despite their differences. objectives: this study was aimed at exploring the inclusion of learners with learning disabilities in mainstream primary schools for teaching and learning. method: this study followed a qualitative approach embedded in a descriptive phenomenological design. data were generated through in-depth interviews with individual participants and were analysed thematically for content. six teachers from six different mainstream primary school classrooms were purposefully selected for the study. results: findings revealed that overcrowding, time constraints and lack of parental involvement impede the inclusion of learners with learning disabilities in mainstream classrooms. however, teachers use: (1) multi-level teaching, (2) concrete teaching and/or learning aids, (3) differentiated instruction and (4) code-switching in accommodating learners with learning disabilities. conclusion: this study argues that for learners with learning disabilities to be more included in mainstream classrooms, the learner population should be reduced to a maximum of 30 learners per class, and collaboration with parents should be enhanced. also, the arrangement of learners for teaching and learning could be limited to small groups consisting of four to five learners. multi-level teaching and differentiated instruction should be applied in settings that do not require learners to be separated from their peers without learning disabilities. contribution: this study will help improve teachers’ inclusive classroom pedagogical practices for all learners including those with learning disabilities. keywords: inclusive education; mainstream classrooms; learners with learning disabilities; multi-level teaching; differentiated instruction; parental involvement; code switching. introduction classrooms nowadays accommodate learners who are diverse in ability, age, race, background and all other aspects that make them different because of policy on inclusivity adopted in 1994 by many nations globally (bubpha 2014). at the heart of inclusive education is a commitment to seeing learners of all kinds receiving education in the same spaces for their social and educational growth (unesco 2005). south african schools have seen persistent growth in the enrolment of learners who are diverse in mainstream classrooms since 2001, including learners with specific learning disabilities as a result of the adoption of policy on inclusion (engelbrecht et al. 2015). the diagnostic and statistical manual of mental disorders fifth edition, test revision (dsm-v-tr) (american psychiatric association 2022) defines specific learning disability as a type of neurodevelopmental disorder that hinders an ability to learn or use specific academic skills (reading, writing or arithmetic), which are the foundation for other academic learning. learners with a specific learning disability experience a greater difficulty in learning than the majority of their peers (bryant, bryant & smith 2017). specific learning disability is understood in terms of poor academic performance as compared to a difficulty posed because of physical, intellectual or sensory deficits. as a consequence of what these learners experience in their learning, they require attention in terms of curriculum adaptation, teaching methods, and additional or specialised teaching and learning materials among other needs (udoba 2014). prior to the adoption of inclusive education in south africa, gwala-ogisi in phasha (2010:165) noted that learners with disabilities were placed in special programmes and remedial education programmes and further divided according to the severity of their disabilities. for example, those with slight specific learning disabilities received remedial assistance within mainstream classrooms, those with moderate specific learning disabilities were placed in temporary to full-time remedial services and those with severe learning disabilities were placed in special schools. education practices followed a strict streaming system that differentiated between general, vocational and academic education based on learners’ abilities within schools (dunne 2010). however, in light of the policy on inclusion that is currently in place, the special needs and the support that learners with learning disabilities require in the classrooms have to be received within the mainstream education system to facilitate their effective education for better academic and social developments (florian 2015; unesco 1994). benefits of mainstream class teaching for learners with learning disabilities include positive teacher–student rapport, real-life connections and good use of strategies and modifications (ford 2013). other benefits of mainstream class teaching for learners with learning disabilities include increased participation by all learners in the learning process and decreased exclusion of those with learning disabilities in the curricula of mainstream schools (florian 2015). thus, classroom teaching practices are obliged to shift away from experiences that work for most learners, towards those that foster the development of rich learning environments, distinct with learning opportunities that are sufficiently made available for everyone so that all learners are able to participate in classroom life (florian & black-hawkins 2011). although there is a considerable amount of research on the inclusion of learners with learning disabilities elsewhere, there is a dearth of literature in the vaal triangle on how learners with learning disabilities are supported in mainstream classrooms. literature review studies carried out globally on inclusive pedagogic practices in teaching learners with learning disabilities in mainstream classrooms pointed to challenges with the way these learners receive their education. consequently, these challenges induce high stress levels in teachers as they try to include learners with learning disabilities in the daily classroom learning activities. for example, a study by dick (2010) revealed that some teachers complain that teaching learners with learning disabilities while attending to other learners without learning disabilities is a stressful job, especially in instances where teachers are required to provide individualised instruction. this is compounded by their inability to differentiate instruction when teaching learners who are widely diverse (hashir 2018). in other instances, the challenges are worsened where learners have to learn or study through a medium of instruction other than their own mother tongue. additionally, a study by mackey (2014) in the united states of america established that teachers felt they had not been sufficiently prepared to teach learners with learning disabilities as they had studied only one undergraduate special education course. in other cases, teachers show confusion regarding the provision of support to learners with learning disabilities because they are unaware of the law pertaining to assessments and supports for learners with special educational needs (ford 2013). for example, a qualitative study by mntambo (2011) in lesotho that explored teachers’ experiences in teaching learners with learning disabilities revealed a lack of understanding of inclusive education practices by the teachers. instead, teachers prefer to focus more on visual and physical impairments than on learners with learning disabilities. the availability of teaching and/or learning materials that address the specific needs of individual learners is an important prerequisite for meaningful teaching and learning for those with learning disabilities. the shortage of such materials has negative consequences on the inclusion of learners with learning disabilities, potentially complicating teaching and learning. a study by udoba (2014) in tanzanian mainstream primary schools revealed that teachers cease to give focussed attention to learners with learning disabilities because of a shortage of teaching and/or learning materials like textbooks. instead, teaching is more focussed on those who are average and those whose academic performances are above average. teachers struggle with learners who lack basic skills in reading, writing and mathematics as they attempt to make them realise their full potential (udoba 2014). a similar finding was reported in a study conducted by ngonyani (2010) in tanzania, which noted that the problem is further compounded by the shortage of reading materials and books giving the teacher the extra task of writing the learning notes every day. other contributing factors included a lack of guidelines that direct teaching of all learners in the same classrooms. some teachers complain that learners with learning disabilities are at risk of not learning under general education classrooms for long-term academic achievements, as well as for their social benefits because the classrooms are overcrowded (garnett 2022). classroom instructions in overcrowded classrooms tend to be directed at large groups of learners, focussing more on what has to be learnt and not necessarily on the levels of the learners. florian and black-hawkins (2011) noted that in england, there are some fundamental constraints that exist within education systems and across schools that counter teachers’ efforts to be more inclusive in their practices. for example, the measuring of learners’ academic performance at ages 7, 11, 14 and 16 years through standardised tests and the publication of the results influence teachers to focus more on learners who attain good results than those who are struggling academically (florian 2015). despite the challenges that teachers face in teaching learners with learning disabilities in mainstream classrooms, a qualitative study by morton (2007) in south western austria exploring teachers’ experiences in teaching learners with learning disabilities revealed that some teachers express feelings of loyalty and attachment to their learners with learning disabilities when they have produced positive results. from the same study, teachers reported that they often utilised group work and paired learners with learning disabilities with those without learning disabilities to facilitate their learning. equally, a study by maciver et al. (2018) in edinburg revealed that teachers who have experience in working with students with special educational needs feel more positive towards learners with learning disabilities. in addition, morton (2007) posited that primary school teachers of learners with learning disabilities work very hard to provide their learners with high-quality level of education. furthermore, a study by education review office (ero) (2015) in new zealand revealed that teachers encouraged all learners to accept diversity through working together with peers in small groups. other studies indicate that teachers in mainstream classrooms are aware of the presence of learners with learning disabilities in their classrooms, and they make special arrangements to accommodate these learners so that they can benefit from the teaching and learning. for example, studies by mwajabu and milinga (2017) in tanzania indicated that teachers consider learners’ disabilities and arrange the seating of learners according to their needs. south african studies highlight pertinent glitches related to the inclusion of learners with learning disabilities in mainstream classrooms. an investigation by lessing (2010) in 350 south african schools revealed that teachers lack the confidence to support learners with learning disabilities to overcome the barriers that they experience in their various developmental skills. teachers are frustrated because they are unable to handle challenges faced by learners with learning disabilities as consequences of external forces like abuse at home (mahlo 2011). further studies reveal that teachers feel that although they have received some basic training in inclusive education, they still lack the basic skills like curriculum differentiation, which helps in assisting learners with learning disabilities. in line with the above, teachers in south africa indicate that they need intensive training in inclusive education so that they are able to support learners with learning disabilities in their classrooms (mahlo 2011). a qualitative study by bojuwoye et al. (2014) in selected western cape schools in south africa exploring learners’ experiences regarding the provision of support services revealed that learners with learning disabilities are grouped together in order to receive extra classes from teachers. ngcobo and muthukrishna’s (2011) study that explored a school-based initiative including children with disabilities in kwazulu-natal revealed that there is some form of hierarchy in the classrooms where learners are arranged based on their abilities. however, such practices are rejected by florian and black-hawkins (2011) who argue that assisting some learners separately leads to labelling of some learners who would have been identified and grouped alone because they have learning disabilities. in addition to the above, a qualitative study by zwane and malale (2018) in the gege branch of swaziland revealed a lack of facilities in government schools and teachers’ incompetency in identifying learners facing learning challenges. a study conducted in gauteng by yoro, fourie and van der merwe (2020), which captured perspectives of recently qualified teachers about the learning support strategies for learners with neurodevelopmental disorders, revealed that teachers use a variety of strategies such as cooperative learning, peer learning, ability grouping visual aids and curriculum differentiation. however, they noted that those strategies tend to be general, and they noted a need for teachers to use more support strategies in regular classrooms. although this study sheds light on the situation in schools located in gauteng province, it cannot be generalised to other parts of the province. vaal triangle in particular, an industrial city located in the southern parts of gauteng province, is highly diverse in terms of its population with a wide range of migrants. theoretical framework this study was carried out through the lens of inclusive pedagogy by florian and black-hawkins’ (2011). the theory stresses that all learning in the classrooms should take place within the same rich environments that have been carefully crafted to meet the needs of all learners despite their differences. fundamentally, inclusive pedagogy emphasises a change in teaching and learning approaches from those that work for some learners towards those that involve learning opportunities that suit all learners (florian & black-hawkins 2011). teachers need to respect and respond to learners’ differences and be able to include everyone rather than excluding some from what is generally available in their classrooms (florian 2007). background to the study has revealed that learners with learning disabilities now form part of the learner populations in mainstream classrooms because of the policy on inclusion. as such, these learners need to be taught and learn in ways that embrace their challenges, as well as give them support when they need it, and ensure improvement in their academic attainments without being excluded from any classroom arrangements which might compromise their educational progress. objectives of the study this study was aimed at exploring the inclusion of learners with learning disabilities in the vaal triangle mainstream primary schools for teaching and learning, through answering to the question: how are learners with learning disabilities included in mainstream classrooms for teaching and learning? research methods and design a qualitative approach embedded in a descriptive phenomenology design was used in this study. the approach is based on the collection of verbal data that are often presented in narrative accounts (arthur et al. 2012). the qualitative research approach offers the researcher the benefit of understanding social phenomena from participants’ perspectives, using their own voices. in the same vein, the phenomenological design enables a researcher to uncover what several participants who experience a phenomenon have in common (creswell 2013). perspectives include participants’ feelings, beliefs, ideas and thoughts regarding the phenomena under study. furthermore, phenomenologists seek to understand how participants experience the phenomena under study. in the context of this study, the approach allowed the authors the opportunity to explore the participants’ experiences in depth and allowed for a nuanced understanding of their daily experiences in teaching learners with learning disabilities in mainstream classrooms. in that regard, a deeper understanding of classroom pedagogic practices in teaching learners with learning disabilities, together with all others without learning disabilities was obtained. as educators with special and inclusive education background, it was imperative that the authors put aside their beliefs and knowledge about the phenomenon studied. the authors adhered to the principle of bracketing by involving an independent researcher to check the research questions that guided the interview, the audio recording as well as the transcripts. the researches kept a journal in which they recorded their beliefs about some issues that emerged from the interviews and used it during data analysis. the journal was made available to the independent researcher as he checked the analysed data, especially the themes that the authors developed. participants and setting this study was undertaken in the vaal triangle, one of the department of education districts in the johannesburg region of south africa. schools in this district are categorised as non-fee-paying, as they accommodate learners from communities with low–income households. furthermore, vaal triangle is an area that accommodates diverse learners from surrounding farms, as well as from peri-urban and urban settings. six educators from six different schools were purposefully selected to take part in this study. the power and logic of purposive sampling are that a few cases studied in depth yield many insights about the topic (mcmillan & schumacher 2012). in purposeful sampling, participants are chosen because they are likely to be knowledgeable and richly informative about the phenomena the researcher is investigating (mcmillan & schumacher 2012). in the same vein, the logic and power of purposeful sampling lie in selecting information-rich cases for study in depth (lodico, spaulding & voegtle 2010). information-rich cases are those from which one can learn a great deal about issues of central importance to the purpose of the study. particular criteria were set in order to identify and select the participants. the criteria that were set which participants were expected to meet related to: (1) understanding of south african policies on inclusive education and (2) more than 5 years’ experience teaching learners with learning disabilities in mainstream classrooms. the authors received assistance from the district-based support team in identifying the schools that had participants who met the above criteria, after which they sought permission from principals of the identified schools to have access to the participants. the school-based support teams assisted in identifying teachers who met the set criteria and were deemed to be the most information-rich cases. the purpose of the study was explained to the identified participants and they were informed that participation was voluntary. data collection data were collected using in-depth interviews. interviews lead to face-to-face engagements with research participants which permit probing deeply into participants’ experiences (atkins & wallace 2012). interviews are also ideal when the researcher wishes to follow up initial responses by probing for additional information that can clarify existing data (savin-baden & major 2013). the researchers carried out in-depth interviews with participants on how they teach learners with learning disabilities in mainstream classrooms. all the interviews were carried out in english as a standard medium of communication. however, participants were encouraged to express themselves in vernacular where they were facing difficulties in expressing themselves, after which the authors translated their views into english with the help of other teachers who spoke the same language. the authors held two separate 60 min interviews with each participant in the afternoons at the places where they work. the two interviews with each participant were spaced between 2 weeks from each other in order to get more information and clarity on what they had said in the first interviews. the interviews took place after school hours, and they were audio recorded with the participants’ permission. data analysis data were analysed thematically using a model by lodico et al. (2010), which has six key steps, namely: (1) preparation and organisation of data; (2) reviewing and exploring the data; (3) coding data into categories; (4) conducting thick descriptions of people, places and activities; (5) building themes; and (6) data reporting and interpretation. the analysis began with data preparation and organisation of the collected data, which entail putting it in a form that can easily be analysed. data transcription that was undertaken related to the following: (1) site or location from which data were collected, and (2) persons studied. the authors read through the data looking at the various types of data collected and wrote down words and phrases that captured the important aspects of the data. data were then coded into categories according to how they were related in describing certain aspects. the idea was to put related data together for easy discussion and interpretation. ethical considerations ethical clearance was obtained from the university of south africa college of education research ethics review committee (no. 2015/05/13/47000872/ 22/mc). this indicates that the study met basic ethical standards. the ethical clearance certificate was obtained before data collection commenced. participants with assistance from the district-based support team and school-based support teams from the selected schools were identified. the participants were given a full description of the study, what it aimed to achieve, including the methods to be used. they were also made aware that participation in the study was voluntary, and they can withdraw at any stage of the research process without negative consequences. they signed consent forms that explained what it meant to be involved in the study, and that they could make an informed choice to participate in the study or not to. the principle of participation without payment was clarified, and they were informed that interviews will take place in the afternoons at their place of work places to avoid interference with their work activities. the authors also assured the participants that what they would say would not be disclosed to other people other than the researchers, and neither would such information be traceable back to them as their real names would not be used in the final reporting of the findings. this was in alignment with the principle of confidentiality and anonymity. participants were also asked to consent to audio-recording as that was important for the accurate collection of data. the authors promised that they will be afforded an opportunity to verify analysed data. more details regarding the participants are displayed in table 1. table 1: participant information. findings and discussions results of this study revealed that although learners with learning disabilities are being included in mainstream classrooms for teaching and learning, there are some deep-rooted challenges that negatively impact teachers’ efforts to give maximum attention to all learners, including those with learning disabilities. these challenges relate to overcrowding in the classrooms, time constraints in giving focussed attention to individual learners and a lack of parental involvement in the education of their children with learning disabilities. four participants indicated that even though they are aware of the need to effectively teach learners with learning disabilities alongside others, overcrowding in the classrooms is a huge hindrance to inclusive classroom practices, as evidenced by participant e who was quoted saying: ‘it’s not practical to reach out to all learners due to learner population. we try to attend to all learners, especially in concepts that you know you can’t teach in the same way, you cannot use one approach, if you do, some learners will miss out. however, the numbers of learners per class are just too high to give individual attention to some learners.’ (participant e) equally, participant c indicated that although they practice multi-level teaching in the classrooms, overcrowding erodes some of their efforts as she stated that: ‘we do multi-level teaching, but it’s hard to do multi-level teaching because we have quite a large number of learners in the classes. there are many learners in the classes. if they were two, i can, but honestly how can i support 15 learners [learners with learning disabilities] in one class. i will not be as effective the way i would want.’ (participant c) overcrowding emerged as one of the major drawbacks to the inclusion of learners with learning disabilities in mainstream classrooms. the study’s findings revealed that class sizes in mainstream classrooms are generally too high, with as many as 50 learners per class. a similar finding in botswana by otukile-mongwaketse’s (2018) study established that large class sizes impede on principles of inclusivity in botswana. arguably, environments in which learners with learning disabilities receive instructional services affect how they learn, as well as the quality of education they receive (heward 2014). such learning environments may not be manageable, and teachers may not be able to give each learner the adequate attention they need to grasp learning content. maximising participation of learners with learning disabilities in the curriculum of the school can be achieved through optimising opportunities for learner engagements in mainstream classes, which, however, are being hampered by the large class sizes in the regular classrooms as indicated in the findings of this study. conversely, smaller class sizes can afford teachers the opportunity to cope with the added responsibility of teaching widely diverse learners in the regular classes (lerner & johns 2012). all six participants complained about a lack of time to effectively include learners with learning disabilities in the classrooms, as shown by participant f who explained: ‘it’s time consuming [giving individual support to learners with learning disabilities]. there are a lot of them who are struggling. as a teacher you see that your expertise is needed, but it’s time consuming to prepare work specifically for them.’ (participant f) participant b bemoaned the amount of paperwork they have to work on which negatively impacts on teachers’ ability to reach out to those with learning disabilities as they need more help. he argued that: ‘we have a lot of admin work as teachers. we don’t spend enough time focussing on our work because we have to do these stats from the district. this makes it very hard for me to have time to help these learners who need more assistance.’ (participant b) the above was corroborated by participant c who stated that: ‘the challenge is the time and space. we are a normal school. we are expected to submit or to produce, to meet passing requirements as a normal school. as teachers we are much aware about what learners are facing and what should be done, but the environment and the space do not allow us time to do what we should be doing in the classrooms.’ (participant c) results indicate that teachers find it highly difficult to attend to learners with learning disabilities in mainstream classrooms because of lack of time as a result of commitments to other classroom obligations. in botswana, teachers end up teaching learners with learning disabilities as part of one large group, treating them as passive recipients of knowledge and depriving them of the opportunity to receive extra attention and support from the teacher (nkobi 2011; otukile-mongwaketse 2018). in tanzania, teachers focus more on learners who put their hands up and leaving out those with learning disabilities because of lack of adequate time to attend to all learners (miles, westbrook & croft 2018). however, in the light of inclusive pedagogy, teachers should be able to respect and respond to learner needs in ways that include all, rather than exclude some from what is ordinarily available in the daily life of the classroom (florian & black-hawkins 2011). arguably, smaller class sizes will reduce the burden on teachers, enabling them to attend to the needs of those with learning disabilities. a lack of parental involvement in the education of their children also poses a threat to the inclusion of learners with learning disabilities. findings revealed that parents’ lack of cooperation when learners have to be sent for further assessments and other psychological services frustrates teachers. this was pronounced by participant c who was captured saying: ‘in my class there is one learner who has adhd, and another one with down’s syndrome. both of them can’t read fluently, they are struggling, but the parents don’t want to take their children for assessments. there is not much that we can do as teachers without information and recommendations from psychologists, especially with an incident that involve adhd.’ (participant c) she added that: ‘the children with adhd can’t read … they can’t write, they are busy playing. sometimes they use their pencils to poke other children. the parent does not want to give consent for assessment. we are struggling with parents who are not cooperating.’ (participant c) in the same vein, participant a stated that: ‘we have these parents of learners with learning disabilities. they don’t want to come for meetings. when they come for meetings, they are in denial about their children’s level of performance.’ (participant a) including learners with learning disabilities goes beyond what teachers do in the classrooms. it also encompasses what parents are doing, or not doing, to facilitate learning and the inclusion of their children in mainstream classrooms. in that light, parental involvement is key to the educational growth of children with special educational needs, including those with learning disabilities (unesco 2005). increased parental involvement is considerably linked to learner’s increased academic achievements (topr et al. 2010). similarly, afolabi, sourav and nenty (2013) asserted that parents’ involvement in the education of their children is a very important ingredient for successful inclusive practice. parents are social actors in the education of their children whose roles include networking with teachers on issues that affect the child’s learning and giving consent for psychological assessments that their children may need. as revealed by this study, lack of parental involvement in instances such as psychological assessments, or cooperation with teachers at meetings deprive learners with learning disabilities of very important supports for inclusion as envisaged in the department of education (2014). in spite of the above drawbacks faced by teachers in trying to be more inclusive towards learners with learning disabilities, results of this study revealed that teachers use different teaching and/or learning approaches in mainstream classrooms. these different approaches include multi-level teaching, use of concrete teaching and/or learning aids, curriculum differentiation and code-switching. four participants indicated that they use multi-level teaching that entails scaffolding content starting from simple to more complex activities in order to accommodate learners with learning disabilities, as evidenced by participant c who stated that: ‘what we do is we use multi-level teaching. we teach them starting from the simplest concepts moving towards the most difficult so that all learners can understand. you can’t teach them [learners] in the same way because they are different. you find that you have someone with adhd in class, someone who cannot spell, and someone who is able to do everything in the same class.’ (participant c) the above was corroborated by participant e who explained that: ‘learners are not the same in achievements, so i try to use multi-level teaching in my class. here i try to meet the needs of all the learners by starting from the simplest to the more complex tasks. this enables all learners to at least achieve something from what they are learning.’ (participant e) results indicate that teachers use multi-level teaching approaches in the classrooms to enable all learners to master concepts starting from what is generally achievable by all learners, moving towards more difficult tasks. similar findings have been established by benmassoud and madani (2019) in a study in morocco, which revealed that multi-level teaching approaches are common practices in the classrooms that afford brighter learners to benefit from demonstrating some skills to weaker learners, while those who are weak can learn a great deal from their counterparts without learning disabilities. arguably, this is in line with one of the inclusive education goals of ensuring that all learners benefit from the curriculum of the school (florian 2015). although it may not be possible for teachers to serve every learner’s needs when using multi-level teaching, especially in classrooms that have high numbers of learners (lynch 2022), the practice augurs well with principles of inclusive education in that teaching and learning takes place in the same spaces for all learners without leaving out others (florian & black-hawkins 2011). on the contrary, three participants indicated that they facilitate effective learning for those with learning disabilities in mainstream classrooms through the use of concrete teaching and/or learning aids, as evidenced by participate a who was captured saying: ‘i use teaching aids. i give them things to touch, like counters. those who are struggling can learn better through the use of concrete aids, at times charts or pictures. i use them in my classes so that all learners can benefit. they need these things.’ (participant a) similarly, participant d asserted that: ‘i try to do that justice for certain concepts like when you are doing counting. i use counters and show them pictures so that they can understand and feel catered for.’ (participant d) the use of teaching and/or learning aids can increase, maintain or improve the functional capabilities of learners with special educational needs, like those with learning disabilities (vaughn, bos & schumm 2011). in the same vein, heward (2014) argued that learners with learning disabilities can improve their comprehension through the use of graphic organisers and other visual representations of elements of narrative stories. the above is further supported by smith et al. (2011) who posited that providing a wide range of concrete teaching and/or learning aids can encourage success in writing for learners who are struggling with shaping letters or numbers. rich environments should be created within the learning centres for learners of different abilities, especially for those with learning disabilities to learn through manipulation (department of education 2014). arguably, rich learning environments can be made available through the provision of concrete teaching and/or learning aids, which is in alignment with one of the principles of inclusive education that calls for the need to avail various teaching and/or learning aids to learners with learning disabilities in order to maximise learning. however, in the light of inclusive pedagogy, the provision of teaching and/or learning aids should be extended from what is ordinarily available to all learners in the class, rather than making ‘different’ or ‘additional’ provision for some individuals who might be experiencing difficulties in their learning (florian & black-hawkins 2011). differentiated instruction emerged as one of the approaches teachers use in the classrooms in order to accommodate learners with learning disabilities. differentiating instruction entails asking questions differently according to learners’ levels of understanding, as well as giving simpler tasks on the same concept to learners who are struggling, as was stated by participant b who was captured saying: ‘we do curriculum differentiation. there are learners who cannot write at all due to motor skills, and there are learners who cannot read due to other challenges maybe because of their foundation. however, we do curriculum differentiation whereby the same concept in grade 6, i will ask the same questions differently in a grade 6 level, we lower the content to meet that gap.’ (participant b) the above was reinforced by participant f who indicated that: ‘some of them they cannot read. we give them simpler tasks different from what we give others, say at grade 5 level. we don’t give them the same tasks but the concept is the same.’ (participant f) teachers must account for individual learners’ differences when giving out instructional activities in the classrooms, which can be done through differentiating instructions (frederickson & cline 2011). however, learners must not be separated in order to receive differentiated instruction as such a practice embodies the qualities of clinical teaching, which is against the principles of inclusive education (lerner & johns 2012). in the same vein, spratt and florian (2013) argued that all learners can make progress within the same environment if conditions are right, essentially implying that they can still be given differentiated instruction without necessarily being separated from others (florian & black-hawkins 2011). five participants indicated that they use code-switching in order to accommodate learners with learning disabilities in the classrooms, as evidenced by participant a who was captured saying: ‘i also use code switching. my learners are mostly sotho speakers and zulu speakers. we are allowed to, but not to over use code switching. i will switch to sesotho or isizulu to explain a concept especially in the beginning of an activity.’ (participant a) the above was supported by participant b who stated that: ‘at times i use vernacular or the language that the learner can understand. you see that the child is not getting what you are saying because i am teaching in english which is a second language to them. once i see that, i try to explain the concept in a language that the learner speaks, that is if i am good at that language as well.’ (participant b) classroom code-switching refers to the practice of using more than one linguistic code in the classrooms by both teachers and learners (lin 2017). findings indicate that teachers use code-switching in the classrooms to accommodate learners with learning disabilities, where the medium of instruction is their second language. essentially, code-switching is used so that learners can understand some concepts better in their home language. in that vein, code-switching increases participation by all learners in the classrooms, and learners end up having a better understanding of english grammar rules even if it is not their home language (simasiku 2016). in light of the policy of inclusion, it can be argued that code-switching increases participation by all learners in the classrooms (unesco 2005). inadvertently, language can pose a major barrier to learning, especially if the medium of instruction is not the language learners speak at home. recommendations and implications overcrowded classrooms undermine teachers’ efficacies to provide inclusive learning environments that are capable of facilitating meaningful teaching and learning for learners with learning disabilities in mainstream classrooms. at times, they fail to find time to attend to individual learners’ needs. to mitigate these challenges, a number of learners in the classrooms should be reduced to a maximum of 30 learners per class so that teachers will be able to attend to all learners. collaboration with parents is important for the effective support of learners with learning disabilities. in addition, parents are more knowledgeable than any other adult about their children; therefore, their involvement in the education of their children could help the teacher understand the child better. moreover, as noted by swart and phasha (2019), the responsibility for educating and socialising children should be a shared responsibility because the inclusion of learners with learning challenges requires both teachers and parents to assume different responsibilities. the study’s findings also revealed that teachers’ use of strategies such as multi-level teaching and differentiated instruction in order to accommodate those with learning disabilities indicates their reception to inclusive practices. the maximum benefit of such methods could be felt if they are applied in settings that do not require them to be separated from their peers without learning challenges. also, the arrangement of learners for teaching and learning could be limited to small groups consisting of four to five earners. small groups could benefit them socially and academically. they are effective in facilitating member interaction and keeping learners with learning disabilities motivated to learn as they will get the attention they need. their confidence could be boosted as they will feel comfortable to ask questions. limitations this study was carried out in the vaal triangle of south africa, involving six mainstream classroom teachers at the primary school level. schools selected for this study were non-fee-paying schools from poor communities. as such, the findings of this study may not be representative of other categories of schools that are not non-fee-paying. essentially, the results of this study do not reflect on how learners with learning disabilities are included in mainstream classes in other settings that might be having different experiences regarding the inclusion of learners with learning disabilities. furthermore, teachers selected for this study had professional qualifications in inclusive education or special needs education and more than 5 years’ teaching experience in mainstream primary schools. in that regard, the voices of participants in this study cannot be generalised to other practitioners of different characteristics. conclusion the study sought to investigate the inclusiveness of mainstream classroom instructional practices for learners with learning disabilities. a qualitative approach embedded in phenomenological design was used in this study. six participants were purposefully selected following the given criteria. findings revealed challenges that are related to the inclusion of learners with learning disabilities in mainstream classrooms, which include large class sizes, lack of time to attend to individual learners who need more support and lack of parental involvement in the education of their children. further findings revealed that teachers use multi-level teaching, concrete teaching and/or learning aids, differentiated instructions and code-switching when teaching learners with learning disabilities in mainstream classrooms. acknowledgements n.h. would like to thank the n.t.p. for her guidance in article writing and ms. shaw for her editorial input. this article is partially based on the author’s thesis of the degree of phd of education at the university of south africa, south africa, with supervisor prof. n.t. phasha. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions the writing of this article was done by n.h and n.t.p contributed to the shaping of the research design, review and revision of the paper. funding information this study was funded by the university of south africa. data availability data sharing is not applicable to this article as no new data were created or analysed in this article. data from the author’s doctoral thesis were used in the writing of this article. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references afolabi, o.e., sourav, m. & nenty, h.j., 2013, ‘implementation of inclusive education: do parents really matter?’, specijalna educakacija: rehabilitacija 12(3), 373–401. https://doi.org/10.5937/specedreh12-4370 american psychiatric association, 2022, diagnostic and statistical manual of mental disorders, 6th edn., american psychological association, washington, dc. arthur, j., waring, m., coe, r. & hedges, l.v., 2012, research methods and methodologies in 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learners with neurodevelopmental disorders: perspectives of recently qualified teachers’, african journal of disability 9, 561. https://doi.org/10.4102/ajod.vi0.561 zwane, s.l. & malale, m.m., 2018, ‘investigating barriers teachers face in the implementation of inclusive education in high schools in gege branch, swaziland’, african journal of disability 6(7), 391, https://doi.org/10.4102/ajod.v7i0.391 abstract introduction theory and literature research design and methodology findings discussion conclusion acknowledgements references about the author(s) cina p. mosito faculty of education, cape peninsula university of technology, south africa albert m. warnick molenbeek school for lsen, maitland, south africa emmanuel e. esambe academic literacy, fundani, cape peninsula university of technology, south africa citation mosito, c.p., warnick, a.m. & esambe, e.e., 2017, ‘enhancing reading abilities of learners with intellectual impairments through computer technology’, african journal of disability 6(0), a206. https://doi.org/10.4102/ajod.v6i0.206 original research enhancing reading abilities of learners with intellectual impairments through computer technology cina p. mosito, albert m. warnick, emmanuel e. esambe received: 26 july 2015; accepted: 20 dec. 2016; published: 24 july 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: developments in the teaching of children with disabilities support pedagogy that emphasises learners’ strengths as opposed to their assumed deficiencies. educators and mediators who advocate this view continually strive for tools and methodologies that enhance learner participation in academic environments. computer technology is one of the tools recognised for its potential to enrich learning experiences of learners with an intellectual impairment. objectives: we sought to assess the influence of text-to-speech stories on the reading ability of intellectually challenged learners. method: a qualitative action research study that involves learners at a special school in cape town, south africa. preand post-test data of the reading performance of learners are analysed with a focus on how they demonstrate change. results: although no claims can be made about the explicit influence on reading performance, computer-assisted learning has the potential in isolating reading processes that classroom-based interventions can address. in addition, computers enhance motivation and enthusiasm to learn. conclusion: a need for education based on inclusion and positive differentiation remains the key driver in any educational interventions. introduction a diagnosis of intellectual disability (id) invites several questions on the extent to which one can learn and the speed at which learning can take place (baroff & olley 2012:1). id has been noted to entail impairments that significantly affect (1) conceptual (language, reading, writing, mathematics, reasoning, knowledge and memory) (alfassi, weiss & lifshitz 2009; edyburn 2004), (2) social (empathy, social judgment, interpersonal communication skills, the ability to make and retain friendships, and similar capacities) and (3) practical (self-management in areas such as personal care, job responsibilities, money management, recreation, and organising school and work tasks) domains (american psychiatric association 2013a; salvador-carulla et al. 2011). the abilities affected by the id suggest that knowledge and skills acquisition for learners with disability are often characterised by a higher level of challenges when compared to learners without the condition (lesgold & welch-ross 2012). given the wide-ranging challenges of this group of learners, the following question is worth pursuing: what kind of change in reading abilities do learners with intellectual disability undergo when taught through text-to-speech books? technological resources can be used to support the learning of the intellectually disabled learner (phillips et al. 2008). technology, in particular the physical properties of colour, sound and imagery of computers can enhance a learner’s understanding of language within a particular context (chai, vail & ayres 2014). in fact, some researchers have pointed out that learners who are placed in conditions of computer-assisted teaching of literacy concepts outperform learners who are under the guidance of educators alone (campbell & mechling 2009) and that often this is attributed to prompt feedback received from the computer (chai et al. 2014; macaruso & walker 2008; scruggs 2008). multimedia technology is an aspect of computer-assisted teaching resource that has benefits across the learning styles of all types of learners as well as providing a different method of instruction (campbell & mechling 2009; macaruso, hook & mccabe 2006; thompson 2005). text-to-speech technology is one such multimedia technology that has the ability to convert electronic text to digitised speech. the technology has brought about the development of electronic literacy. electronic literacy allows for all kinds of literary activities such as reading, writing and spelling that one can access through computers. therefore, an important characteristic of multimedia is that it facilitates reading on every learner’s level (thompson 2005). this study assesses the influence of text-to-speech stories (also called talking books) on the reading ability of learners with id. talking books refers to audio-formatted recordings of books, magazines and other texts generally used to allow visually impaired learners to access such texts (american foundation for the blind 2016). the learners were put through a reading programme that involved listening to text-to-speech story on the computer. a pre-test was conducted prior to the intervention to assess the extent to which they could read at the time. a similar assessment was conducted after they had been exposed to the intervention (post-test). the learners and their teachers, who are all bilingual (english and afrikaans), identified significant benefits from this intervention, especially within the context of special needs schooling in south africa. theory and literature literacy is an integral part of the curriculum. it is needless to say that success in other areas of learning is strongly linked to the extent to which learners can carry out the literacy acts of reading and writing (erickson et al. 2009). in the case of learners with id, literateness is regarded as a strong influence of how they are perceived because being literate enhances their face-to-face interaction with others (unesco 2006). in addition, increased levels of literacy among the intellectually disabled bring with them increased perceptions of competence from those without impairments. while there are many theories with embedded concepts that are often tapped into in explaining learning and cognitive development, for this study we look specifically to vygotsky (1978). among other important contributions, his work explains learning among children who are chronologically of the same age but mentally on a different level. this difference between is what vygotsky refers to as the zone of proximal development (zpd). the zpd takes into account the completed maturation processes as well as those that are taking shape. the concept implies that even in the absence of any intellectual impairment there is a distance between what learners know on their own and what they could potentially know if they receive the necessary assistance from the more capable other – be it technology or educators. in the case of this study, the assistance of the more capable other becomes even more crucial given the challenges imposed by the learners’ id. zone of proximal development therefore gives us insight into the joined supportive capabilities of technology and educators; and how this could influence the intellectually disabled learner’s learning to a desired level of functioning. zone of proximal development takes a new meaning when seeking to understand learning and development which does not occur as regularly theorised, such as in the case of those with id. in this regard, we look specifically to vygotskian theory of dysontogenesis (td) which provides a framework for the analysis of enabling mechanisms for change with regard to the development of those with impairments. in this view, the strengthening and empowerment of skills as opposed to emphasis on weaknesses is the route to take for educators (gindis 2003). to vygotsky, mental functions (such as those involved in reading and learning how to in this instance) have their origin in interpersonal activity where ‘mental activity is mediated by culturally derived sign systems’ (fernyhough 2008:227). this vygotskian principle holds significant promise in the process of teaching learners with id to read and acquire other scholastic tasks. in td, disability is regarded as a social aberration (lumadi 2013; rodina 2006), and this view is held without necessarily discounting the biological properties of disability. the perspective clearly places the bulk of responsibility on the mechanisms educators employ for influencing change which could include how they incorporate different forms of mediating tools. educators who understand and exercise the underlying principles of mediation are those who will seek culturally available means such as text-to-speech reading books in teaching reading. it is with this thought in mind that we explicate specific literacy needs of learners with intellectual impairments and implications of such needs on mediation. specific needs and problems of the intellectually disabled learners as explained earlier, id imposes cognitive difficulties in reading, writing, spelling and the processing of numbers (american psychiatric association 2013b). learners with id typically have impairments in the following cognitive areas: language, communication and auditory reception. reasoning, idea production and cognitive speed. memory and learning. visual perception. knowledge and achievement (wehmeyer et al. 2004). edyburn (2004) has posited that one of the primary reasons for learners to be transferred to a special school is because of the difficulty they have with reading. more specifically, these affected learners struggle to meet the requirements of the reading and viewing learning outcome. learners with id struggle to memorise and rehearse text that they have read. they also struggle to organise text or instinctively elaborate on it to assist them to learn (alfassi et al. 2009). learners who have reading challenges also generally have difficulty in phonemic awareness and analysis, word identification, reading fluency and understanding of the text (elder-hinshaw et al. 2006). this brings us now to the literacy specific needs and challenges of such learners. literacy-specific needs and challenges reading and writing constitute modalities through which language can be taught to young learners (carstens 2013). language can therefore be considered a tool for the conceptualisation and transfer of meaning and interpretation of texts (silliman, buttler & wallach 2002; wong, graham, hoskyn & berman 2008). reading according to lessing and de witt (2002) is a single aspect or learning outcome in literacy competence which can be described as the construction of meaning for which the learner must attain a necessary level of decoding proficiency. children learn to read by progressing through a number of developmental processes. these are letter and word recognition, decoding, comprehension as well as how fluently the learner engages with the text (long & zimmerman 2009). word recognition refers to the ‘instant recall of words in which the reader resorts to no obvious mechanisms to recognize the word’ (wong et al. 2008). when a learner is able to recognise words without hesitation, they have developed a state called automaticity that enables the reader’s brain to quickly and automatically process the words. in addition, learners who can instantly recall the words being read are capacitated with building mental representations of the message of the text that they can tap into when required to demonstrate their comprehension of a story (allor et al. 2010). reading comprehension is the ability of the child to understand the text being read (lea & street 2006). learners with reading difficulties generally experience poor comprehension because of their lack of being able to read and monitor their understanding of the information. the ability to decode words, poor vocabulary access and fluency in a language are contributory factors to a learner’s comprehension (wong et al. 2008). reading fluency, being the last of the processes, relates to the speed and accuracy in the execution of the reading task (chard vaughn & tyler 2002). the pace of a learner’s reading affects the way the learner retains the information and develops meaning from the text (wong et al. 2008). therefore, learners who read at a very slow pace struggle to retain the information being read, and consequently develop inadequate meaning from the text. for a learner with id, interventions that entail the teaching of language processes described above have been found effective in improving their reading abilities (al otaiba & hosp 2004; unesco 2006). given the literacy challenges, for example word identification, reading fluency and comprehension of the text, that the intellectually disabled learner has to contend with, what strategies can educators employ to ameliorate the literacy of such learners? reading interventions according to edyburn (2004), when learners struggle to read, educators tend to resort to other methods of instruction. the problem is that a new method of instruction may not necessarily yield positive results. this is particularly true if the very problem of reading is part of the inherent nature of their disability. it is our view that, if one holds the position that all learners can learn, albeit at different levels, then any support mechanism or strategy would be worthwhile (doe 2001; gindis 2003). among well-documented strategies is the use of assistive technology which is defined as ‘any item, piece of equipment or product system, […] used to increase, maintain, or improve functional capabilities of individuals with disabilities’ (hobbs et al. 2009:153). the foundation for assistive technology in the united kingdom extends this definition to the ability to enhance ‘independence for disabled’. brodwin, star and cardoso (2004:29) indicate that assistive technology does not only involve computers with all their components but involves an ‘integral process of assisting individuals with disabilities, […] to maximize their human potential’. furthermore, computer assistive technology has due consideration for the learner and his or her individual traits, as well as his or her abilities and challenges. there are hosts of computer software on the market that can meet the specific needs of different groups of persons with a disability. in the section that follows, we highlight some of the technologies that have been used to aid learners with intellectual disabilities. text-to-speech technology thompson (2005) refers to text-to-speech technology as a type of multimedia program that has the functionality of converting computer text to digitised speech. zhao (2007:35) in turn indicates that speech technology refers to ‘technology that enables machines to receive and accept human oral language as input and respond with human or human-like oral language as output’. an important element of this technology is that it enables the learner to access software applications or content with immediacy in the speech feedback that could allow the learner to correct reading mistakes. forgrave (2002) and zhao (2007) are of the opinion that speech technology minimises the decoding problems that disabled learners sometimes have, which allows for better comprehension. furthermore, it provides learners with repetitive visual and auditory cues that can help them to comprehend the text. supportive e-text e-text can be defined as the ‘text that has been altered to increase access and provide support to learners’ (edwards 2008:36). supportive electronic text aids learners with disabilities in dealing much better with text with the use and support of computer technology. one of the advantages of the computer software is the ability to change the way text is viewed and read, by modifying the font size and colour. the text can also be read aloud. further to this, multiple images can be shown at any given time (anderson-inman & horney 2007). these features are in contrast to printed text. the printed material in general does not afford the reader the opportunity to customise the text being read to them. interestingly enough in instances of electronic text and printed text, the educator has to play a supportive role as well. electronic books e-books serve to replicate the printed paper-based storybooks into a digital format. in contrast to print paper-based books, e-books have additional multimedia effects to support the learner’s understanding of the text (rhodes & milby 2007). e-books have a number of intrinsic elements such as sound, animation and interactive activities. these elements can scaffold the learning of the learner, allowing him or her to eventually master the given task. in the process, the learner can be exposed to chunks of the reading task, for example to read one paragraph a few times then asking the learner to retell that part. the interactive nature of e-books makes them particularly very attractive for young learners, and they tend to repeat activities which increase learning (picton 2014). learners with special educational needs, such as struggling readers, can therefore benefit from the additional text features of electronic books (larson 2010). this particular feature could prove to be helpful for the participants of this study. the learners’ intellectual disabilities as has been indicated earlier range from mild to severe. this implies that the learners’ reading ability levels also vary. multiple opportunities to expose the learners to text, which they have experienced on an auditory and a visual level, could aid their reading ability. ‘e-books and other text-to-speech readers boost students’ self-esteem while providing access to texts that were previously out of reach’ (rhodes & milby 2007:256). furthermore, children’s books that have been recreated into an electronic format allow the learner to track print and view a visual representation of the story. electronic books help the learner to build their vocabulary, aid the understanding of the text while at the same time showing them how to read fluently (horney & anderson-inman 1999; rhodes & milby 2007). however, some limitations do exist in the use of talking books. for example, e-books have limited use in the classroom during the course of the delivery of the literacy curriculum. despite existing evidence from chera (2002), some researchers are of the opinion that the true value of talking books having real educational potential has yet to be realised (fox 2002; littleton, wood & chera 2006). research conducted by chera (2002) has shown that talking books can promote phonological awareness in children during their initial reading experience of learning to read. learners that have well-developed phonological awareness recognise on an auditory level that words can rhyme, start or end on the same letter and that letters can be manipulated to form new words. this unlocks future developmental skills that allow the learner to reflect and manipulate letters to create new words (marthinussen 2011). phonological awareness is regarded as a significant antecedent skill to the successful acquisition of reading (adams 1990b; blachman 2000; goswami & bryant 1990; littleton, wood & chera 2006). accordingly, the reader has to learn to master phonological skills that will enable him or her to break up the speech or the spoken word into phonological segments. it is clear from these studies that talking books have the potential to support reading development. contextual enablers and constraints of technology in special needs education teaching children with intellectual impairments entails the use of appropriately identified technological aids. text-to-speech technology is one such technologically intensive teaching aids in the context of special needs teaching and learning. this does not however mean that the decision to employ technology is taken blindly. we consider and accept the caution made by roulstone (2016) that the use of technology, especially in special needs education, should be couched in the context of the learners. in the case of this study, the learners and the teachers are bilingual in english and afrikaans. the use of text-to-speech technology is therefore suitable and easy to achieve because both english and afrikaans are official languages in south africa and are heavily used in many educational platforms. this consideration was important to negate the possibility of blindly adopting technological tools for the sake of technology, or to provide false hope of the potential of the tool to the learners (breen 2015; marchal-crespo & reinkensmeyer 2009). research design and methodology this paper reports on part of a larger qualitative action research that was conducted in 2013. the broader study sought to assess the impact of text-to-speech technology on the reading ability of intellectually impaired learners. we opted for a qualitative approach because our interest is in exploring how individual intellectually disabled learners responded to the technology, thus assessing the strengths of such technology as a mediating artefact. action research is a ‘systematic study that combines action and reflection with the intention of improving practice’ (cohen, manion & morrison 2007:297). in choosing action research intervention for this study, we consider issues such as the setting of the intervention, the participants involved and the theory that informs the analysis of the data. bloomberg and volpe (2008) explain that contextual information exposes the context within which the participants reside. the participants’ perceptions of the intervention is also important when analysing the data and the theory used to interpret the data should support the conclusions that are drawn and recommendations that are suggested (bloomberg & volpe 2008). for this, we adapted a four-step action research model from rossouw (2009) (see figure 1). figure 1: the action research process. this model allowed us to base the implementation of our intervention on sound research, careful planning and alignment with our research questions. the strength of this model is that it enables us to use theory as a reflection tool when interpreting the data (maxwell 2008). the underlying purpose of action was to involve educators in a continual interrogation of their practices on whether learners’ reading abilities were improving. in the process, the researchers and educators had the opportunity to possibly improve learning through informed, committed and intentional action (beylefeld et al. 2007) in the form of repeated action of reading and recalling talking stories. setting and participants this action research took place at a special school within the cape metropole area that caters for learners with id. the primary convenient sampling group comprised 35 learners across the five intermediate phase classes of the school where one of the researchers worked. to ensure that none of the learners was put at an advantageous or disadvantageous position in relation to one another, the following measures were undertaken: (1) all learners were exposed to the same reading activity, whether dependent (active educator support) or independent (less active educator support) and (2) no undue attention was granted to anyone beyond the level of support that would have been granted to all in the class during class activities. in this sense, the use of a control group was not an option so as to keep with ethical promises that all learners would be equally exposed to potential benefits of the intervention. in addition to being in the intermediate phase (grades 4–6), the learners met the following criteria: prior to their participation in the study, the learners had been diagnosed as being intellectually disabled (the diagnosis of id was carried out prior to placement at the special school) and were chronologically between 10 and 14 years old with an average mental age of between 4 and 7 years old. the learners were in the intermediate phase but were being exposed to the foundation phase (grades r–3) curriculum because of their mental age. the secondary sample group comprised the four educators of the learners. the reasoning behind the selection of this group was based on their daily direct involvement with the learners. the function of the educators was to assist the researchers to perform the preand post-tests as well as to engage the learners during the intervention sessions. the educators’ role in the study was therefore to provide qualitative accounts of learners’ progress or lack thereof. the school selected for this study had the following contextual characteristics: well-resourced school (computer equipped with a computer lab and internet), located within the cape town metropolis: access to excellent communication and technological facilities, bilingual classes (both learners and teachers use afrikaans and english as a medium of teaching and learning). procedure preliminary activities preliminary activities included securing permission to conduct the study from relevant authorities, applying for ethical clearance and piloting the study in classrooms similar to those that later served as the main study base. the content of the project was positioned within and aligned with the curriculum requirements of the school. the base curriculum was the national curriculum, and the project served as a form of differentiated teaching given the needs and strengths of learners at the school. permission was sought from the educators to participate in the study as part of their day-to-day teaching activities and they were informed that participation was voluntary. one of the researchers’ roles was to set up all the study instruments and collection of data as he was an educator at the school. parents’ consent was not sought because the project neither entailed anything outside the normal learning routines nor posed any form of danger or discomfort to learners. the aim of the pilot was essentially to inform the main study. a pilot study is defined as a ‘small study conducted prior to a large piece of research to determine whether the methodology, sampling, instruments and analysis are adequate and appropriate’ (de vos et al. 2002:211). the pilot study involved surveying the literature for guidance from previous research, consulting with experts in the field of education and technology and refining the data collection instrument. the pre-tests and post-tests of the learners took place in the learners’ own classes. preand post-testing was conducted with all five classes in the intermediate phase of the school. each learner was given a short story from the talking story series written by margaret koopedi (2007a–d) typed in a 28-point century gothic font. learners were all given 1 min each to read the story consisting of 33–44 (afrikaans language) and 34–35 (english language) words. the choice of which stories to read was determined by a learner’s home language (either english or afrikaans). the learners’ reading behaviours including errors were noted and recorded for further analysis. assessment of the learners’ reading was based on the following criteria: (1) words and sentences read, (2) total recalled words, (3) time utilised, (4) errors made and (5) other unfolding reading behaviours. the analysis of the learners reading across the preand post-test continuum followed the intervention sessions. interventions the interventions consisted of the learners being exposed to the same stories as had been used during the pre-tests. however, during the interventions the stories had text-to-speech elements included. essentially, the learners made use of a text-to-speech program that was meant to stimulate them both visually and acoustically as opposed to printed information. in the process the learners could listen to electronic text on a computer screen whilst following the highlighted words at the same time. during the intervention the learners used headphones to listen to a story at least three times for 20 min. as the story was read by the computer, the individual words were highlighted. the stories were english and afrikaans versions of ‘in our classroom’ (in ons klaskamer) and ‘can you help me?’ (kan jy vir my help?) by margaret koopedi (figure 2). figure 2: intervention stories. the learners were exposed to the words of the story on three levels. the first level was when the educator ‘read’ the story to them a few times and then following the story on the computer. the second level was when the individual learners got an opportunity to listen to, follow and read the story, whilst the rest of the group listened to their peers. the third level of exposure was when the educator explained and re-read the parts not properly read by the learners. this intervention was premised on research reported by zhao (2007) and thompson (2005). in both instances learners were exposed to books with text-to-speech capabilities during the intervention process. the focus was to improve the learners’ phonological (sound-symbol) ability as well as their recognition of words. the emphasis on word recognition is considered a crucial indicator to a learner’s understanding of text (zhao 2007). research reported by littleton et al. (2006) had as a focus area the use of electronic text (text read from a computer monitor) as part of a reading programme. demonstrations of how to operate the stories was carried out with the learners, after which they were allowed to use the books independently. an adult was always present during the course of the interventions. the learners were exposed to two computer sessions per book lasting about 15 min in total per week for a period of three months. they were post-tested after one week at the completion of a given intervention session. the duration of the project was three months as follows: april/may; may/june; and july/august. educator interviews semi-structured interviews were conducted with the four educators helping with the tests’ administration and the intervention. the main purpose of the interviews was for the educators to share observations they had made about learners during the two processes. the interview questions were as follows: what in your view is the role of technology, especially computers, in the learning and teaching of mentally challenged learners? what, if any, have been the general achievements that your learners made when using computers as a learning tool? have you observed any change in your learners’ reading ability whilst being part of the reading sessions? what have you learned from this change? how would you describe your learners’ reading competency (before and after the intervention) in relation to the following units: the ability to code text word recognition visual discrimination of words reading fluency their understanding of the stories do you have any last comments or observations? ethical consideration the study received ethical clearance through the cput faculty of education ethics committee (approval certificate efec 2-7/2009). permission to conduct the study at western cape public school was obtained from the western cape education department research directorate. findings the findings presented in this section are from reading performances of learners during preand post-tests and highlights from interviews conducted with educators of these learners. reading performance two clearly defined groups emerged when performance was analysed. the first learner group are those who managed to read between 4 and 35 words, compared with the second group that had a very low to zero (0) reading pre-test score. from the outset it appeared that the strides made by learner group 1 (lg1) (high pre-test) was much higher than that of learner group 2 (lg2). that is, the learners who were able to identify more words during the pre-test were able to replicate and improve on that score during the post-test. in addition, time spent on reading (speed) by the lg1 was between 27 s and total given time of 60 s. the lg2 spent a full 60 s on the reading tasks. beyond the question of how many words were read and how many errors were made, the next level of analysis focuses specifically on: (1) learners’ reading behaviours and (2) whether they made or did not make errors. the behaviours and errors during reading were categorised along language processes and milestones expected of learners as they learn how to read. these are ‘letter and word recognition’, ‘decoding’, ‘comprehension’ as well as how fluently the learner engages with the text (long & zimmerman 2009:4). the categorisation was based on a constant comparison of all behaviours and errors. a feel or look alike criteria suggested by maykut and morehouse (1994) was used during the constant comparison to determine the categories. this process can be likened to the ‘first reading of, or first order imposition of meaning, on the data’ conducted in order to arrive at specific categories of unfolding descriptions of learner performance (mosito 2005). the description of errors and reading behaviours follows. description of reading behaviours and errors omission: this refers to instances where a learner leaves out the words ‘pieces’, ‘of’, ‘chalk’ from the sentence ‘there are two pieces of chalk’. substituting words in text with own words: a learner in this instance replaces the word ‘there’ with ‘here’ in the sentence ‘there are four books’. another example was to read ‘pencils’ instead of ‘pictures’ in the sentence ‘here are seven pictures’. refusal to read: the learner refuses to read any part of the story and keeps quiet for the remainder of the session. no reading took place. identification of letters as opposed to whole words: it means the learner identifies certain or all the letters in a given word instead of reading the whole word, for example, ‘o’, ‘e’, in the word ‘onderwyser’ (educator). self-corrects misread words: an example of this is where a learner (e.g. rhona and bradley) reads ‘onderwyser’ (male educator) and corrects the word by reading ‘onderwyseres’ (female educator). this implies that learner has realised that he or she has omitted a segment of a word and corrected it without prompting. reversals: a learner tends to read letters or words in reverse (ekwall 1981), for example ‘d’ for ‘b’ in the word ‘daar’ (there) read as ‘baar’ in the sentence ‘daar is een onderwyseres’ (there is one educator). additions or insertions: the learner, for example, adds a word in the sentence ‘daar is twee bordkryte’ (there are two pieces of chalk) reads as ‘daar is net twee bordkryte’ (there are just two chalks). often these additions do not distort the meaning of the sentence. in line with the above descriptions, table 1 depicts the performance of lg1. table 1: learner group 1 (lg1) categorisation of reading behaviours. it is clear from table 1 that the most dominant feature of lg1 reading behaviour was problems with word and letter recognition. on the positive side, there was a notable decrease in word and letter recognition problems during the post-test. in addition, during the post-test some of the learners (3) indicated comprehension of the story by adding correctly to the context words(s) which were not in the story they were asked to retell. the positive behaviours noted in table 1 are corroborated by educators’ observations as they responded to questions on (1) general achievements and (2) specific reading behaviours with regard to reading processes such as word recognition, comprehension and fluency. on the first question, there was consensus among the four educators that computer technology seemed to facilitate independence and discipline. one of the participating educators commented, ‘i pick up a tremendous enthusiasm in the learners … they insist they want to read every day … they longed for what they have learnt … means a lot for them … i must just make it smaller … they must get the exercise everyday… when we go to the computer lab … they want to go straight to the stories … good thing [text translated from afrikaans].’ (educator 4, female, lg1) in table 2, findings from the reading performance of the remaining 26 learners are presented. table 2: learner group 2 (lg2) categorisation of reading behaviours. similarly to the lg1 in table 1, lg2 also demonstrated high instances of word and letter recognition difficulties. the incidence of these difficulties improved slightly during the post-test. five of the learners demonstrated comprehension of the story through their ability to add a correct word to the initial story. one of the observations made by the researcher-educator was that the errors that were made by lg2 were in many ways far removed from the real word or were just nonsensical. these types of errors were based on the fact that the learner could not decode the requested word. this observation explains the slight decrease in errors noted between the preand post-tests. as the study was not about a performance of a particular group against the other (lg1 vs lg2), in table 3 all the behaviours per category from both groups was added in order to arrive at the overall picture of all the learners. these totals inform the discussion that follows. table 3: overall categories of reading behaviour. it is clear from the above overall depiction of learner performance between the preand post-tests that there was a positive upward movement in learners’ comprehension of the story. the positive trend is indicated by a high level of meaningful insertions of words which did not feature in the actual story words and the learners’ ability to retell the stories. educators’ observations of learner performance were in line with the trend. for example, educator 3 disclosed ‘… word recognition, … sight reading … and now i see with some of them one could move beyond that; visual discrimination of words, … showing me word for word, … using that method, … found that it works well for me.’ (educator 3, male, lg1 & 2) another important observation made by the educators was that the text-to-speech artefact had been the most exciting part of the interventions. educator 1 explained that stories told and seen through the computer seemed to generate an interest level she had not seen in learners before. in her own words, ‘a child views a story on the computer, hearing this voice coming from the computer … makes learning interesting and fun’ (educator 1, female, lg1 & 2). with the picture portrayed by the findings in table 3, we are now at an informed position to address more specifically the question of the nature of change in reading abilities learners with id in this study have undergone following teaching that was mediated with text-to-speech books. discussion the gains made by learners might appear insignificant if we were concerned with a learner population without id. for this group of learners gains like increased enthusiasm and motivation, observable increase in number of words read and sophistication in comprehension such as insertions of their own meaningful words in retelling the story could all attest to the joined mediational impact of educators and listening to and seeing story words on the computer. as reading ability consists of several processes ranging from word recognition, comprehension and fluency, we examine more specifically the nature of processes that emerged following the intervention. word recognition the biggest reading difficulty experienced by learners in this study pertained to word recognition. allor et al. (2010:4) state that ‘good readers effortlessly recognize words and build mental representations of the message of the text’. this implies that learners who struggle with word recognition will be robbed of the tools for comprehending and storing messages for later recall. this finding leads to a conclusion that word recognition is a major challenge for intellectually disabled learners. while there appears to have been improvement among one group of learners in this instance, the duration of the intervention might not have allowed for high levels of achievement across all participating learners. comprehension of text where reading comprehension is concerned, the performance of learners in this study confirms what previous research has revealed. learners with word recognition difficulties have lower grasp or comprehension of the story which is often exacerbated by poor decoding required for word recognition (wong et al. 2008). reading fluency a number of correct words and sentences read and time spent on reading are indicative of reading fluency which is defined as the speed and accuracy in the execution of the reading task (chard, vaughn & tyler, 2002). another finding in this study is the extent to which the participating learners were challenged in this process and improved or did not between the preand post-tests. the analysis resulted in two distinct groups of learners in this regard (lg1 and lg2). the former group’s performance marked them as the stronger lot as they utilised far less of the provided reading time and some managed to read all the 35 words. most of the participants in lg2 utilised all the given time of 60 seconds but failed to read a single word correctly. limitations of the study and future research it is on the question of the emerging reading processes that one limitation of the study reveals itself. initial in-depth analysis of data should have occurred after the pre-test in order to isolate those areas that the intervention could have addressed. this limitation is a crucial finding by itself which future research could address. the second limitation relates to the absence of a control group. it is possible that what we have interpreted as reading gains could have resulted from the use of any teaching artefact besides the text-to-speech stories. performance of a control group which was not exposed to the intervention could have led to clearly established conclusions. lastly, that the analysis isolated two groups and this was not followed up, for example in terms of probing from the educators concerned if they did anything differently which in their opinion could have resulted in higher gains for lg1, was a lost opportunity for revealing the specific variables that could have added to this marked difference between the two groups. conclusion the study set out to assess the influence of computer technology on reading abilities of learners with intellectual impairment. two crucial implications can be drawn from the foregoing discussion: despite initial intents, no claims of this influence can be made given the duration of the intervention and the non-exclusion of other influences within the study context which could have influenced the reading behaviours noted in the foregoing section. all the same, important learnings have unfolded from the study. firstly, the study clearly points towards the potential of computer-assisted learning in isolating reading processes that interventions based on testing could address. an example is increased word recognition which ultimately leads to reading fluency. the second crucial learning is the role of computer technology in enhancing enthusiasm and motivation to learn which in a sense supports findings from similar studies (scruggs 2008). when all the factors are put together, it is clear that many positive attributes associated with teaching and assessing reading through talking stories position this form of technology as a necessary tool in the education of learners with id. this study has successfully applied the social-constructivist notion of ‘remediation and compensation for abnormal development’ (gindis 2003; yankun 2006) such that the learners’ reading competencies as well as their attitudes towards reading have to some extent improved. the results support vygotsky’s call for education planning and design based on inclusion, and positive differentiation (karpov 2005). acknowledgements the authors thank and acknowledge cape peninsula university of technology for a research fund used for the setting up of this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions c.p.m. supervised the research project, provided critical feedback with regard to the conceptualisation of the research, conducted the analysis and wrote the article. a.m.w. designed the instruments for this research, collected the data 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viewed 12 april 2016, from http://unesdoc.unesco.org/images/0014/001459/145968e.pdf vygotsky, l.s., 1978, mind in society: the development of higher psychological processes, harvard university press, cambridge, ma. wehmeyer, m.l., smith, s.j., palmer, s.b. & davies, d.k., 2004, ‘technology use by students with intellectual disabilities: an overview’, journal of special education technology 19(4), 7. wong, b.y.l., graham, l. & hoskyn, m., 2008, the abcs of learning disabilities, 2nd edn., elsevier academic press, burlington, ma. yankun, m., 2006, ‘the inheritance and development of social constructionism psychology to vygotsky’, advances in psychological science 14(1), 154–160. zhao, z., 2007, ‘speech technology and its potential for special education’, journal of special education technology 22(3), 35–41. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) lauren tomes department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa sonti pilusa department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation tomes, l. & pilusa, s., 2025, ‘sexual, bladder and bowel problems in people with spinal cord injury in rural kwazulu-natal, south africa’, african journal of disability 14(0), a1480. https://doi.org/10.4102/ajod.v14i0.1480 original research sexual, bladder and bowel problems in people with spinal cord injury in rural kwazulu-natal, south africa lauren tomes, sonti pilusa received: 27 may 2024; accepted: 15 dec. 2024; published: 30 apr. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: spinal cord injury (sci) is a life-changing experience that comes with multiple health challenges such as bowel, bladder and sexual health problems. studies on the experiences of people with sci based in rural south africa are scarce. objectives: this study aimed to explore the experience and long-term care needs related to sexual, bowel and bladder problems in people with sci in a rural setting. method: an exploratory qualitative design was employed. semi-structured interviews were conducted with people with sci living in rural kwazulu-natal. the interviews were transcribed verbatim and coded. the content analysis steps were followed to identify categories and themes. results: a total of 12 individuals with sci were interviewed. frustration was the main theme that emerged with three sub-themes: types, management and effects of sexual, and bladder and bowel problems on individuals with sci. the expressed long-term care needs were medication specific to sci conditions, health information on secondary health conditions and prevention care, and resources such as nappies and quality catheters. conclusion: the findings confirm that secondary health conditions such as bowel, bladder and sexual health problems affect the well-being of people with sci in rural settings. prevention care is urgently needed. contribution: patient education information on bowel, bladder and sexual health problems, and access to medication is imperative to support self-management practice. keywords: spinal cord injury, bowel problems, bladder problems, sexual problems, long-term care needs. introduction spinal cord injury (sci) is a traumatic experience resulting in long-term disability and vulnerability to developing secondary health conditions (shcs) (adriaansen et al. 2016). secondary health conditions such as pain, pressure sores, and sexual, bowel and bladder problems are common health problems in people with sci (pilusa, myezwa & potterton 2021a; strøm et al. 2022). one shcs cluster that tends to occur because of sympathetic and parasympathetic dysfunction related to the sci, is the combination of bowel, bladder and sexual health problems (park et al. 2017). a multi-country survey on shcs found a very high prevalence of bowel, bladder and sexual health problems (70.8%, 62% and 71.3%, respectively) (strøm et al. 2022). unfortunately, bowel, bladder and sexual problems tend to decrease quality of life and well-being (mashola & mothabeng 2019; park et al. 2017). general prevention care for people with sci needs strengthening. in general, prevention services for patients with sci are not prioritised (lofters et al. 2019). fuseine et al. (2018) reported barriers and facilitators in sci care in ghana. some barriers included health professional attitudes and poor access to the health education needed. studies in south africa have also reported contextual factors influencing sci care and prevention care for shcs (bezuidenhout et al. 2023). environmental factors included social attitudes and support, employment opportunities, inaccessible public transport, health professionals’ lack of knowledge of sci and shcs, access to medication and assistive devices (bezuidenhout et al. 2023; pilusa, myezwa & potterton 2021b). personal factors that influence the prevention of shcs include lifestyle behaviour choices, owning an assistive device and patients owning their health (pilusa, myezwa & potterton 2021c). these factors may be worse in a rural setting where resources are limited; therefore, such studies focussing on rural-based patients with sci are recommended. literature suggests that managing shcs is not easy for people with sci (fuseini, aniteye & alhassan 2019; guilcher et al. 2013). poor access to timely health information, lack of follow-up care, a reactive health system that only focusses on treatment instead of prevention care and a shortage of medicines make shcs challenging (guilcher & jaglal 2011; pilusa, myezwa & potterton 2021d). studies on shcs have been conducted in urban settings in south africa and there is a need to understand the experience and care needs of people with sci in rural areas. this study aimed to explore the experience and long-term care needs related to sexual, bowel and bladder problems in rural-based people with sci. research methods and design this study was conducted as part of l.t.’s msc research, which sought to understand the lived experiences of people with sci and their long-term care needs related to bladder, bowel and sexual problems. two of the objectives of the study included an exploration of the lived experience of bowel, bladder and sexual problems in people with sci and the identification of long-term care needs related to bowel, bladder and sexual problems in people with sci. study setting the study was based in a district hospital in rural umkhanyakude district, kwazulu-natal. umkhanyakude district is one of the most rural areas in south africa marked by a high unemployment rate, inaccessible roads and limited access to essential amenities. the district hospital renders inpatient and outpatient rehabilitation services that include physiotherapy, occupational therapy, dietetics and speech therapy. in addition, the rehabilitation unit has a partnership with a community-based non-profit organisation (npo) for people with various disabilities including sci. there are 53 people with sci in the catchment area. the npo has seven peer supporters who live with a disability and they play a critical role in disability care in the hospital. the peer supporters offer support and health education to people with disability in their care journey. when visiting individuals with disabilities, the peer supporters are accompanied by a qualified occupational therapist and physiotherapist to ensure holistic disability management. study participants peer supporters affiliated with the npo helped to identify and recruit community-dwelling adults with sci irrespective of the level, duration and severity of the sci, and those above 18 years of age. purposive sampling was used to recruit people with sci in the community and in the hospital. only one potential participant was admitted for pressure sore; therefore, the interview was conducted in the hospital. data collection all the interviews were conducted in the participant’s preferred language, taking approximately 30 min to an hour. we audio-recorded the interviews and took notes on the participants’ impressions and the discussion. discussions between the researchers were conducted after the interviews. the interviews were conducted from 19 to 22 april 2022. data collection stopped when no new information emerged. data analysis all the interviews were transcribed and then translated into english. the researchers read transcripts making sure the translation was accurate. maxqda software version 2018.2 was used for data analysis. we followed the following steps outlined by erlingsson and brysiewicz (2017): read and re-read to become familiar with the content of the transcripts. the researchers coded the transcripts inductively separately. we categorised similar codes and identified the overarching themes. rigour the following activities were conducted to ensure the trustworthiness of the process and the study findings: we have explained in detail the research process and setting, all the participants were purposively selected and we captured personal reflections and observations. all interviews were audio-recorded. the researchers held debriefing sessions throughout the research process. reflexivity both researchers are physiotherapists with an avid interest in public health and disability management. the author s.p. conducted research on sci and shcs in an urban area. our approach to care has always been to understand the unmet care needs to inform care and relevant intervention strategies. not many physiotherapists focus on sexual, bowel and bladder problems; but from our observation, these three shcs are neglected in clinical rehabilitation. ethical considerations ethical approval to conduct this study was obtained from the university of the witwatersrand human research ethics committee (no. m210813). the south african national health research database (no. kz_202201_018), the district hospital and the npo granted permission to conduct the study. the study aim and process were explained in detail in isizulu to all the individuals with sci. written consent and permission to audio record the interview were granted before conducting the interviews. semi-structured face-to-face interviews using an interview guide with open-ended questions were conducted in the preferred setting stated by the participant. nine interviews were conducted at the participants’ homes, two at the hospital because one participant was admitted for a pressure sore and the other one was in the physiotherapy department. the questions included in the interview guide with probes to facilitate the interview are listed in table 1. table 1: interview guide with open-ended questions for face-to-face interviews. results out of 53 sci people in the catchment area, we only managed to interview 12 people with sci. the majority were men. all the participants experienced shcs: sexual, bowel and bladder problems, pain, spasms, pressure sores and contractures. table 2 shows the participants’ demographic profile. table 2: the participants’ demographic and injury profile. the theme related to the experience of sexual, bladder and bowel problems was ‘frustrating’. the participants expressed a sense of frustration brought up by the lack of control over bladder and bowel problems: ‘i fail to control urine because when it pours esssh i cannot control it’. i don’t know how i can explain it because i really don’t have control over it.’ (p6, male, 30 yrs, l3) ‘the bladder problem is very frustrating because i wake up at night being pressed with urine but end up fighting with my bladder for a very long time for it to release urine.’ (p1, male, 28yrs, t8) similar sentiments were highlighted related to sexual problems. although the participants engaged in sexual activity the sense of dissatisfaction with their sexual life left them feeling frustrated: ‘i often practice oral sex just to satisfy my wife, but i do not perform it daily for obvious reasons that there is no satisfaction on my side, and it does not make me feel happy.’ (p3, male, 51yrs, l5) ‘i won’t lie, it (sex) is not good. i do it (sex), but i don’t get satisfied. sometimes a woman can visit me expecting to have sex, but it just won’t happen. it is very bad.’ (p12, male, 38yrs, t12) related sub-themes are presented in table 3. table 3: theme and sub-themes. types of bladder and bowel problems table 4 outlines the types of bladder and bowel problems mentioned by the participants. table 4: types of bladder and bowel problems. mostly men stated the types of sexual problems (table 5) they experienced: erectile dysfunction, poor sexual performance and the lack of sexual desire. table 5: types of sexual problems. management of bladder, bowel and sexual problems various strategies were used to manage sexual, bladder and bowel problems. figure 1 outlines the management strategies for sexual, bladder and bowel problems. figure 1: management strategies. effects on well-being the effects of sexual, bowel and bladder problems were felt in different life domains: mental health, physical health, social lives, time and finances. mental health the male participants stated that they had a lot of stress around their sexual life and inability to satisfy their partner sexually: ‘i feel stressed about the fact that i cannot have sexual intercourse with my wife to satisfy her sexual need … ’ (p2, male, 41 yrs, l4) some men felt inhuman because they could not satisfy their partners’ sexual needs: ‘this stresses me a lot because i do not see myself as a complete man, for obvious reasons that i cannot satisfy my partner in bed and fulfil her sexual desire.’ (p11, male, 46 yrs, t12) yet, one participant proved his manhood by having children even though he did not enjoy sex: ‘i got injured before having children, i got all my children after the spinal cord injury. that made me prove that my manhood exists.’ (p1, male, 28 yrs, t8) fear was a common feeling among the participants. some participants were afraid to lose their partners: ‘sexual problems led to me losing hope in relationships and realising that there is no need for a relationship because we won’t do anything (sex) with a person i will fall in love with.’ (p1, male, 28 yrs, t8) ‘i’m afraid that my woman will leave me for another man with sexual appetite, who will satisfy her sexual needs and make her feel happy.’ (laughing …) (p11, male, 46 yrs, t12). fear of leaking in public was evident in some participants: ‘when i’m around people i stay in fear that urine might just flow’, leading to isolation ‘ahhh the problem of urine bothers me the most when i am around people. sometimes, i isolate myself from people because i might wet my pants in their presence’ (p6, male, 30 yrs, l3). physical health pain, pressure sores and contractures affected sexual health. the presence of pain from healed pressure sores, stiff muscles and joints caused discomfort during sexual activity, affecting positioning and lowering interest in sexual activity as reported by some participants: ‘i cannot lie for a long time on the side where i had a pressure sore because it gets painful. this pain lowers my sexual appetite, it hurts me because i can see that my partner is not sexually satisfied.’ (p2, male, 41 yrs, l4) ‘ever since my disability, i never had sex because my spinal cord area and legs are stiff, which makes it impossible for me to have sexual intercourse. my knees and muscles are also stiff and that limits the chance to try having sexual intercourse.’ (p3, male, 51 yrs, l5) the presence of a pressure sores made some participants decide to put aside their sex life: ‘since i was injured and developed pressure wounds, i realised i would not involve myself in any sexual activities. it was early 2015 when i saw that i had pressure sores, i just chose to put aside my sex life.’ (p4, male, 34 yrs, l3) the presence of urinary incontinence also affected engagement in sexual intercourse as expressed by the participants: ‘during foreplay urine just flows.’ (p12, male, 38 yrs, t12) social lives the participants highlighted how their social lives were limited by the presence of sexual, bowel and bladder problems. inability to satisfy partners sexually led to losing intimate relationships: ‘my previous sexual relationship ended because i could not satisfy my partner sexually, so we decided to go our separate ways’ (p6, male, 30 yrs, l3). using public transport was difficult for most participants: ‘the flow of urine while you are trying to get into a car, your trip just gets interrupted. you will wet your pants. this thing affects my life.’ (p11, male, 46 yrs, t12) ‘my bowel condition restricts me from using public transport because most drivers often assume that a person in a wheelchair might poo in their cars.’ (p12, male, 38 yrs, t12) management takes time the participants expressed how bladder and bowel management disrupted their lives because the process took too long. for example, few participants stated: ‘i wait for five minutes for urine to come out, but at that time i will be in a rush or need to go somewhere.’ (p1, male, 28 yrs, t8) ‘when i visit the toilet, i am forced to wait for a long time before pooing because the stools are hard.’ (p12, male, 38 yrs, t12) long-term care needs the participants stated that they needed more health information and access to medication such as dulcolax, pain medication, sex stimulants and quality catheters. figure 2 outlines the long-term needs related to sexual, bowel and bladder problems. figure 2: long-term care needs related to sexual, bowel and bladder problems. discussion this is the first study on sexual, bladder and bowel problems in people with sci based in rural south africa. the participants expressed feelings of ‘frustration’ related to sexual, bladder and bowel problems. the presence of sexual, bladder and bowel problems can be disruptive and affect the quality of life. a sense of frustration and lack of control over long-term disability and resulting health conditions is common among people living with sci (callaway et al. 2015; fuseini et al. 2019). thus, long-term care support is needed to ensure challenges in self-care are identified and addressed. as previously reported, the participants experienced a range of shcs and co-occurrence of shcs including sexual, bowel and bladder problems (brinkhof et al. 2016; park et al. 2017). clustering or co-occurrence of shcs such as pain, pressure sores and contractures can also make managing sexual, bowel and bladder problems challenging. when developing shcs prevention and management interventions, it is essential to be holistic and consider interventions that address multiple shcs (dejong & groah 2015). it was good to hear that the study participants managed bowel and bladder problems using various strategies in line with sci care guidelines (sezer 2015). however, most participants used nappies when travelling or at night to avoid leakage. nappies are costly and can be a risk for pressure sores. support to ensure low-risk strategies for bowel and bladder management must be explored to lessen the financial impact on the individual with sci. this study confirmed the struggle people with sci experience in shcs management and prevention practices (chang et al. 2017). managing sexual problems is not easy, despite the environmental setting, making some men feel devalued and inhuman. issues of sexuality, sexual health and intimacy are important to people with sci, albeit neglected. conversations on sexual health, intimacy and challenges experienced should be incorporated into sci care. patient information can include sexual health, positioning, safe sex practices, and human immunodeficiency virus (hiv)/acquired immunodeficiency syndrome (aids) given that it is prevalent in our country. similar to previous studies conducted in urban settings, sexual, bowel and bladder problems affected the participants’ well-being (callaway et al. 2015; pilusa, myezwa & potterton 2021e). the participants expressed emotions of worry and fear related to sexual, bowel and bladder problems. although sci tends to be seen as a physical disability, the mental health impact of the injury and the shcs must not be neglected. moreover, the fact that most of the participants were unemployed young men with low education status consequently affecting their employment prospects, this too can also affect their mental health status. there is a need to ensure that mental health and well-being are regularly assessed and addressed in the sci population by a multidisciplinary team. we also found that relationships were affected by sexual problems and bowel and bladder problems. social support and relationships play a major role in health and disability outcomes. although the findings are similar to the studies based in urban areas, environmental factors in rural areas are worse. for example, the roads to the participants’ homes were inaccessible. the roads were rough steep terrain. getting out of the yard to see a neighbour or travelling a long distance to the local clinic or hospital was challenging. thus, individuals resorted to paying taxi drivers, who were not always willing to transport them, more money to pick them up from their houses. we could understand the isolation and the desperation because of the sci. furthermore, rural settings are marked by low education status and high unemployment rate, as indicated by the participants’ sociodemographic data. long-term care needs include health information, access to medication, proper toilets and quality catheters. it was surprising that access to disability friendly transport and assistive devices was not mentioned as this also affects access to care (pilusa, myezwa & potterton 2021b). empowering people with sci is part of patient-centred care and is critical for individuals with long-term conditions (hudon et al. 2012). given the cultural diversity in south africa and inequalities in literacy levels, patient information must be made easily accessible in local languages. the beauty of the npo we worked with was the peer supporters who could communicate in the local language. furthermore, access to medication and catheters was also highlighted as a necessary intervention (pilusa, myezwa & potterton 2022). we are advocating for better care planning for people with sci. care programmes for people with disabilities must adopt long-term perspectives to care ensuring access to essential services, assistive devices and medicine without worsening the individual financial status. conclusion the findings showed that sexual, bowel, bladder problems are frustrating for people with sci. this study calls on health professionals and policymakers to strengthen sci care and management for bowel, bladder and sexual problems. health information sessions can be developed to empower people with sci. future studies are recommended employing participatory approaches to develop prevention and management interventions for sexual, bowel and bladder problems. limitations the study cannot be generalised as it depicts the experiences of people with sci in this context. we had few female participants, and they did not share a lot about their sexual experiences. this could be because of cultural beliefs around sexual health. most of the time, women are deemed to be recipients and may not face the same frustrations as men. the study was also conducted in rural south africa, findings in urban areas may differ as social and environmental circumstances may differ. implications research: we need implementation research on the impact of peer supporters and their role in the health system. practice and policy: incorporate peer supporters in the health system to support people with disabilities from diagnosis and throughout the rehabilitation phase. acknowledgements the authors are grateful to the non-profit organisation siletha ithemba the peer supporters, therapists from manguzi hospital, and all the participants who shared their experiences. this article is partially based on the author’s thesis entitled ‘experience of bowel, bladder and sexual problems and the effectiveness of a health program on quality of life and mental health in people with spinal cord injury in manguzi’, towards the degree of master of science in the department of physiotherapy, university of the witwatersrand, south africa in 2023, with supervisor dr. s.i. pilusa. it is available here: https://wiredspace.wits.ac.za/items/8d326ea5-6366-4fdd-a8d2-520b6b3b9914. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. the author s.i.p. serves as an editorial board members of this journal. s.i.p. has no other competing interests to declare. authors’ contributions l.t. and s.p. conceptualised the study. l.t. collected and analysed the data and wrote the manuscript. s.p. supervised the study and edited the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are openly available from the 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https://doi.org/10.1038/s41394-022-00530-w sezer, n., 2015, ‘chronic complications of spinal cord injury’, world journal of orthopedics 6(1), 24. https://doi.org/10.5312/wjo.v6.i1.24 strøm, v., månum, g., arora, m., joseph, c., kyriakides, a., le fort, m. et al., 2022, ‘physical health conditions in persons with spinal cord injury across 21 countries worldwide’, journal of rehabilitation medicine 54(3), jrm00302. https://doi.org/10.2340/jrm.v54.2040 abstract background methodology findings discussion limitations of study conclusion acknowledgements references about the author(s) maria zuurmond international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom janet seeley department of global health and development, london school of hygiene and tropical medicine, london, united kingdom tom shakespeare international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom gifty g. nyante department of physiotherapy, faculty biomedical and health sciences, university of ghana, accra, ghana sarah bernays school of public health, faculty medicine and health, university of sydney, sydney, australia citation zuurmond, m., seeley, j., shakespeare, t., nyante, g.g. & bernays, s., 2020, ‘illuminating the empowerment journey of caregivers of children with disabilities: understanding lessons learnt from ghana’, african journal of disability 9(0), a705. https://doi.org/10.4102/ajod.v9i0.705 research project registration: project number: itcrzf56 original research illuminating the empowerment journey of caregivers of children with disabilities: understanding lessons learnt from ghana maria zuurmond, janet seeley, tom shakespeare, gifty g. nyante, sarah bernays received: 04 feb. 2020; accepted: 23 sept. 2020; published: 27 nov. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: empowerment is an increasingly popular goal, considered core to a transformative agenda for children with disabilities and their families. however, it can still be a poorly understood concept in practice. objective: this article is an empirical analysis of the ‘empowerment journeys’ of caregivers participating in a community-based training programme in ghana. method: in-depth interviews were conducted with 18 caregivers at three time points over 14 months. thematic analysis was conducted on the full data set, with three representative case studies selected for more detailed analysis to illustrate the dynamism of time and context in shaping the empowerment journey. results: our findings illuminate the complexity and non-linearity of the caregiver empowerment journey. there were important gains in individual dimensions of power and the nascent emergence of collective power, through improved knowledge and valuable peer support from group membership. however, further gains were impeded by their limited influence over wider economic and sociopolitical structural issues that perpetuated their experiences of poverty, stigma and the gendered nature of caregiving. the support group facilitator often played a valuable brokering role to help traverse individual agency and structural issues. conclusion: a richer and more nuanced understanding of caregiver empowerment in the community and family context can inform the wider discourse on disability. guidelines on working with people with disabilities, and the role of empowerment, should not neglect the pivotal role of caregivers. there are important lessons to be learnt if we want to improve family-centred interventions and transform the lives of children with disabilities. keywords: caregiver; carer; children with disabilities; empowerment; support groups. background whilst definitions of empowerment are diverse, it is generally agreed that it is a process, or outcome, that is multidimensional and seeks to shift prevailing power dynamics, which can be at the level of people, communities or organisations (luttrell et al. 2007). empowerment as both a process and outcome for families of children with disabilities is seen as increasingly relevant. the pivotal role that families play in improving health outcomes for women, children and adolescents is outlined in the global strategy on women’s, children’s and adolescents’ health (world health organization (who) 2016). this strategy calls for a transformative approach in which women and children can be the most ‘powerful agents for improving their own health’, through developing their own individual potential to make informed decisions, combined with active partnership with other stakeholders. empowerment is foundational to disability-inclusive development and community-based rehabilitation (cbr). it is one of the five pillars of the world health organization cbr matrix alongside the health, education, livelihood and social sectors. empowerment is also a cross-cutting theme, and the guidance promotes the ‘importance of empowering people with disabilities, their family members and communities … to ensure that everybody is able to access their rights and entitlements’ (who, unesco, ilo & iddc). empowerment is also a core element of the international classification of functioning, disability and health (icf), a biopsychosocial model of disability, where disability is conceptualised as the product of an interaction between bodily function and personal and environmental factors. personal factors include elements of individual empowerment, such as self-esteem and resilience, and equally an environment that facilitates empowerment is essential (shakespeare & watson 2001; world health organization & world bank 2011). concepts and theories of empowerment and power much of the early conceptualisation of empowerment stems from the work of educationalist paolo freire; his work was essentially about the fight for social justice through social transformation, driven by power acquired through acquiring knowledge and resulting in the conscientisation of the individual, allowing them to drive change in their own lives (freire 1996; luttrell et al. 2007). these ideas were then heavily drawn upon in the discourse of how power could address poverty reduction in international development and establish that poorer people, through participatory empowering processes, are enabled to take more control over their lives (chambers 1983, 1994). expanding on the work of chambers, in the dialogue on gender and development, emphasis was given to the value of different dimensions of power, notably the personal and inner dimensions of power, as well as the need to examine the underlying structural drivers of oppression (moser 1989; rowlands 1997). rowlands (1997) made a case for a more nuanced understanding of power, arguing that the earlier work on power (foucault 1982) did not allow for factors that might influence an individual’s agency to act, or the idea of collective agency, and that previous models did not shed enough light on the social mechanism of power. instead, based on a gender analysis of power relationships, rowlands proposed a three-dimensional empowerment framework, exploring power at the personal level, within close relationships and at a collective level. power is then divided into four categories: (1) power within, which is about individual capability and self-worth; (2) power to, which is about the agency of the individual to take actions; (3) power over, which is about an individual’s ability to access or influence economic, social or political factors; and (4) power with, which is about collective power to take actions with others (luttrell et al. 2007; rowlands 1997). a parallel theory development was taking place in psychology in the 1980s on psychological empowerment (pe), focus on the individual and encompassing perceptions of personal control, a proactive approach to life and a critical understanding of the sociopolitical environment (perkins & zimmerman 1995; zimmerman 1995; zimmerman & warschausky 1998). this model has three elements – intrapersonal, behavioural and organisational – with levels of empowerment varying across different life domains, for example, someone might be empowered in the home setting but not in the work setting, or vice versa. at the same time, within the disability movement, the social model of disability placed an emphasis on removal of the structural barriers in society, in order to empower people with disabilities to overcome their experiences of oppression (shakespeare 2006). an additional important conceptualisation of power, found in gaventa’s power cube (gaventa 2005), offers a different lens for understanding the complexities of power. he describes power as being on a continuum, with categories of visible, hidden and invisible power. ‘visible power’ is described as observable decision-making dictated by formal rules and structures, ‘hidden power’ describes which people and institutions get to the decision-making table, whilst ‘invisible power’ is described as more ‘insidious’ and is the power that shapes the sense of self, influenced by social and cultural norms that can perpetuate what is considered normal and acceptable. the model describes how these forms of power must also be understood in terms of the spaces and places (from local to global) in which power might be exercised, coming together in a three-dimensional power cube. he argues that it is insufficient to just be in possession of power, but people must have the space to then exercise power. a persistent debate that runs through all these theoretical discussions on power and empowerment relates to individual agency versus a structuralist approach to change. the structuralist perspective proposes that empowerment approaches should be primarily aimed at dismantling social, economic and institutional barriers to have greater influence over change, and the human agency perspective places a greater emphasis on individuals’ capability to act rationally and autonomously (baber 1991; fazil et al. 2004). instead, there is increasing recognition that both elements need to be present, are seen as complementary and dynamic forces (luttrell et al. 2007) and are not binary; rather, there is a more fluid dynamic in how power operates. a review of the role of individual agency versus structural approaches in human immunodeficiency virus prevention concluded that this dichotomy was not helpful but that instead there needs to be a better understanding of the communities in which people act and connect in order to effect change (kippax et al. 2013). operationalising empowerment since this theoretical development, ‘empowerment’ has become a ubiquitous term and an increasingly popular buzzword (cornwall 2007). some argue that as a result it is now a devalued term that has been hijacked and depoliticised from its original meaning (batliwala 2015). despite its common use in health programmes, there continues to be limited clarification of the meaning and operation of ‘empowerment’ (cornwall 2016; crivello et al. 2014; luttrell et al. 2007), and approaches focus too narrowly on individual change, such as adopting healthy lifestyles and improved self-efficacy of the individual (laverack 2009). given the importance of empowerment in the cbr guidelines, it is also surprising that there is a dearth of literature on defining, understanding and measuring empowerment within programmes with people with disabilities in low-income settings (rule 2013). specific literature on caregiver empowerment is largely absent from the literature. in high-income settings, the lack of studies on what empowerment means in practice for family-focussed disability programmes has been highlighted, with a tendency for programmes to define and measure individual empowerment of the parent as an outcome of disability service provision (banach et al. 2010; nachshen 2005; singh et al. 1995). in the united kingdom, it has been argued that carer empowerment has received very little attention (larkin & milne 2014) and that too often the role of the mother is undervalued and peripheral in the discourse about children with disabilities (ryan & runswick‐cole 2008). a study of an empowerment and advocacy programme in the united kingdom with caregivers argued that insufficient attention is given to the social, cultural and familiar contexts and other structural issues that can limit the capacity to change (fazil et al. 2004). despite the popularity of the term, with some exceptions (joseph 2020), it continues to not receive much critical attention. given this critique around the operationalisation of empowerment, and limited research on caregiver empowerment in the lives of children with disabilities in lowand middle-income settings, where arguably there is more dependency on families to provide most of the care, this article sought to examine the experience of empowerment of caregivers who engaged in a 1-year training programme in ghana. methodology intervention this article draws on data from a large preand post-intervention study to evaluate the impact of a caregiver training programme called getting to know cerebral palsy (lshtm & hambisela 2013). this was a 1-year programme, with 10 modules that were participatory in nature to promote critical thinking, problem-solving and peer support, based on principles of adult learning theory (knowles 1984). the parent support groups were established by the local implementing partner, the presbyterian church of ghana, in sites where they worked, and had an infrastructure for cbr or inclusive primary healthcare programmes. up to 10 parents per area were invited to join a support group and participated in 3–4-hour training sessions on a monthly basis, with topics that included understanding your child, communication, evaluating your child, play, eating, disability in your community, running your own parent group and everyday activities. referrals were also supported for assistive devices. each caregiver had a child aged 18 months to 12 years with a confirmed diagnosis of cerebral palsy. caregivers also received a monthly home visit from a group facilitator and a community session to raise awareness about the programme. the groups were run by a pair of facilitators who were therapists, normally a local physiotherapist assistant combined with a primary healthcare worker such as a special needs teacher, nutritionist or a cbr worker. the impact of the programme on well-being has been published (zuurmond et al. 2018a, 2018b). in the broader study, 75 primary caregivers were invited to join a caregiver–parent support group in one of eight districts in ghana. the primary caregiver was defined as the member of the family with the main responsibility for looking after the child. in this article, the research questions we seek to explore are: (1) to understand the role of empowerment of caregivers as they engaged with the training support programme and (2) to understand the key factors that shaped caregiver empowerment, at the level of the individual, family and community ecosystem. participant selection caregivers were identified through the community-based screening programme for cerebral palsy and through the hospital records of children diagnosed with cerebral palsy in the last 6 months. for the in-depth qualitative study, 18 families were then purposively selected from four sites, to ensure a geographical spread, different socio-economic status and a mix of children according to gender, age and severity of cerebral palsy. eleven families were initially selected, and following the death of three children, a further five families were selected in the second round of interviews and two more at end line. participant selection details are illustrated in figure 1. figure 1: details of sampling process. data collection a total of 37 in-depth interviews were conducted with 18 primary caregivers across three time points: 2 months before the start of the training programme; around 6 months into the training; and within 1 month of completion of the programme. semi-structured interview guides were used, and all interviews were conducted in the home. the guides initially explored issues of what the child was able to do, what their understanding was of the condition, and who provided support within the family and questions about the caregiver well-being. mid-term questions probed engagement with the programme and changes experienced. topics also emerged through a process of iterative data collection and analysis in which areas of further investigation were developed in light of emerging ideas and concerns expressed in the interviews. supplementary shorter interviews were conducted with selected secondary caregivers at the time of the household interviews, in order to capture additional perspectives on the caregiving experience within the household, and detailed field notes were kept. the interviews were conducted either by a local ghanaian or by an international researcher (female ghanaian, g.n.; white british female, m.z.). interviews were conducted in four local languages with translation into english as required. all interviews were audio recorded, translated into english and then transcribed. analysis two key stages of the analysis were conducted: a thematic analysis across all data from the 18 families at baseline, mid-term and end line and then a biographical case study analysis, which collated all the data from each family into a case study and detailed the change over time for each of the 18 families. the data included transcripts, as well as field notes and project monitoring forms, in order to provide a more holistic overview of their lives, in line with the guidance for longitudinal analysis (creswell 2013; green & thorogood 2009). for purposes of better illustrating the change over time, we are presenting three case studies. the case studies were selected to be representative of the larger sample (see figure 1) and to illustrate and explore pertinent thematic concerns. focussing on fewer individuals enabled us to obtain greater richness, detail and completeness than with other analytical approaches (flyvbjerg 2013, prior 2016) and helped us better illuminate the influence of the dynamic relational, social and economic context over time, which is not always captured so clearly by presenting a thematic analysis. we used the conceptual framework of rowland’s model of power (luttrell et al. 2007), as detailed in table 1, to explore power across four different domains. we also applied the socio-ecological model (bronfenbrenner 1994), which outlines the multiple ecosystems in which children and their caregivers are embedded, thereby exploring the domains of power at the individual, family and community levels. ethical consideration ethics approval was obtained from the noguchi memorial institute for medical research, university of ghana, and from the london school of hygiene and tropical medicine (reference number: 8905; 25 march 2015), united kingdom. informed written consent was obtained from all participating caregivers, with a signature or thumbprint. all children identified with malnutrition were referred for follow-up, and the cbm child protection policy was adhered to. the case studies have all been provided with pseudonyms in this article. findings our case study families seventeen of the 18 participants were women: 14 mothers, 3 grandmothers and 1 male cousin. the overall level of caregiver education was low, with eight never having attended school and only three having attended high school or tertiary education. a socio-economic index illustrated that most families were extremely poor, and fathers were completely absent, lived separately or worked away from home, commonly with infrequent visits. in summary, from the thematic analysis, the key emerging themes across the data from all 18 families were (1) acquisition of power within at the intrapersonal level, (2) the gradual development of power with other group members, (3) the brokering role of the group facilitator and (4) the economic and sociopolitical structural issues that very often limited the caregiver’s power over change. the intersectionality of power with gender, poverty and stigma was also evident. we organise our results by firstly presenting a case study and then linking the case study to the wider thematic analysis conducted on data from across all 18 families. case study 1: jacinta and maxwell jacinta, a single unmarried mother with two children, lived with her own mother in rural upper east ghana. one of her sons, maxwell, was 2.5 years old, had severe cerebral palsy and was severely underweight and stunted when we first met him. the grandmother had elephantiasis and had limited mobility. they were subsistence farmers, with some small additional income from hat weaving. the mother was unmarried, and the father of the children visited once over the 14-month period, bringing soap as a contribution to the household. when we first met jacinta, before she joined the support group, she did not raise her eyes from the ground. it was her mother who provided detail about how difficult their situation was, the particularly high levels of stigma experienced because of traditional views about the child and how isolated they felt. when we met jacinta 6 months after attending the group, she laughed and chatted openly about the programme and talked of new skills acquired to improve the care for her son. she had felt confident enough to explain her son’s condition to neighbours: ‘before, they [neighbours] used to insult me that i have given birth to a kinkiriku [spiritual child]. they used to say this to the child: “go away you, this kinkiriku.” that was before i knew the group. after i met the group, i always could explain to them what i learnt. now they do that no more.’ (jacinta, code 9916) jacinta reflected on feeling valued as a ‘human’, having status conferred by the value of her group membership and meeting other mothers who shared the same situation, thus building her social capital, and also through feeling valued and worthy enough to be visited at home by a facilitator. jacinta’s case illustrated the development of the power within as she gained more self-confidence, self-esteem and feelings of self-worth: ‘at first my mum and i used to weep. i thought i was the only one with this problem but when i saw my colleague women with similar problems, i realised that i wasn’t the only one with this problem. i feel that we are also human beings and that is why people have come to visit us. their coming makes me happy.’ (jacinta, code 9916) in terms of power to, jacinta was able to comment on her various improved caregiving skills, and she felt able to share that information with her biological mother, thus reducing her own caring workload. despite these positive changes at the individual level, a lack of political and economic power remained a major impediment to jacinta when we met her after 6 months. she had run out of cash for hat-weaving, and poverty was a major challenge, exacerbated by her inability to work away from home because of the need to look after her son. the family did not benefit from any social protection initiatives, such as the leap (livelihood empowerment against poverty) programme, because as they explained, they lacked political allegiance to community leaders: ‘if you are not in their politics … you wouldn’t be picked’. this demonstrated the invisible and hidden aspects of power that exist in communities and the lack of space made available to our caregivers to exercise their power. the group facilitator has good contacts with local community health workers, and he now facilitates maxwell’s inclusion in a nutritional programme, whilst jacinta had previously been turned away. this case study illustrates a prominent change across all caregivers, that is, improvement in their power within, over the 1 year. the solidarity of the support group was a common theme, frequently described as ‘like a family’, and the realisation that they were ‘not alone’ appeared to play an important role in their empowerment journey. another common theme illustrated, and shared across most interviews, was a reduction in self-blame, generated from having more knowledge about their child’s condition, thus helping with improved feelings of self-worth. whilst jacinta’s case study illustrated the power to change her caregiving practices and share knowledge and skills with her own mother, the broader thematic analysis reflected mixed caregiver experiences. frequently, relationships at the family level remained strained over the year, especially within the husband’s family, and mothers continued to have little power within the social norms and power structures. case study 2: beatrice and david beatrice was a confident and articulate young mother when we first met her. she had two children and lived on her own in the outskirts of accra, renting one small room. her son, david, was 4 years old and was diagnosed with severe cerebral palsy. beatrice was a seamstress by trade, but because of full-time caregiving for her son, she was not working when we first met her, and this was a source of financial problems. her husband left them shortly after her son’s birth, blaming beatrice for ‘bringing disability into the family’, and the last time he had visited was more than 3 years ago. he provided no support. when we met beatrice a second time at 6 months, there was growth of her power within and increasing evidence of power to take actions. she was positive about her newly gained knowledge, had implemented improvements in caring for her son and had taken steps to enrol david in school. however, she was upset about how she had been treated by the head teacher, who turned her away and said the school was unsuitable for her son. the group facilitator was looking for another school. in terms of catalysts and impediments to empowerment, it was evident that the group facilitator played a vital role, using his own position as a special needs teacher and his networks to negotiate the ‘hidden’ and ‘invisible’ power of the education system, and being offered a space at the table to exercise that power. he finally secured a place for david at another school. when we met beatrice for the third time, after 14 months, the power with other group members to take collective action was slowly materialising. for example, several group members visited a mother who needed extra support in facing a difficult situation at home. in the absence of other community support mechanisms, the group ‘family’ appeared to be playing an increasingly valuable role as a social safety net for many of the caregivers. sadly, beatrice explained that she had ‘regressed’ since we last saw her, mainly because she had obtained a job as a seamstress, but then had lost the job and borrowed money to try a variety of small trades, all of which had been unsuccessful and resulted in debt. the most significant impediments to beatrice’s empowerment journey were her lack of economic power and her struggle to meet even the basic needs necessary for survival: ‘there are days that i struggle to get something to eat and i sleep on an empty stomach. it is not just once. and i don’t want to be a burden on the people i live in the house with … the little i have i give to the children.’ (beatrice, code 5558) this case study illustrates the very common impact of poverty on caregivers’ agency across the sample, with the exception of the only two mothers who were in regular paid employment. poverty was exacerbated when a mother lived unsupported by the child’s father or his family, as was the case for almost all parents in our sample. even where mothers were living in extended families, a common theme was exclusion and a lack of power over economic resources within the household, which limited their power to take simple actions, such as buying more nutritious food for their child or taking their child for necessary health checks. as the local cbr manager reflected, for many of the families, ‘empowerment starts with the stomach’. the ‘brokering’ role of the facilitator in helping caregivers navigate their way was a recurring theme across all families, such as the facilitator helping to renew a health insurance card, to negotiate the administration of access to the disability common fund, to help organise equipment repairs or to facilitate access to health or education services. although the caregivers had acquired knowledge and confidence, social and political processes were still sometimes overly complex to navigate, or caregivers were not afforded a space to exercise their power. this was illustrated by one mother who finally had the confidence to go to the government office to register her daughter for the disability common fund, only to be turned away. case study 3: carol and james carol was educated to the secondary level and was one of only two mothers in the sample to have a professional job with a regular income; she was an administrator in the government health service. she was the only mother who had a husband living at home and who did not work away, and she had two daughters and a son. her son, james, was a very bubbly smiling boy of 4 years old, with moderate cerebral palsy. her son was turned away from the local government school because of his disability, but she chose a private school for him and drove him to school on her motorbike. the first time we met her, before she started the programme, she described her fight to get a diagnosis for her son. after visiting various doctors over a 2-year period, she finally used her work network to approach the regional health director to demand a diagnosis. this demonstrated high levels of self-confidence from the outset, actively seeking information and support. as the main breadwinner in the family, she had power over economic resources, and this facilitated her decision to send her son to private school and to obtain extra healthcare for him. her case study mirrored the one other mother who was also in paid employment. when we met carol at 6 months, this power within had translated into her becoming a key mother within the support group, supporting the facilitator with running the group, and someone that other mothers turned to for support and advice. although power with activities were still limited outside of the group, there were valuable examples of organising collective visits to each other’s homes across all the groups: ‘we are more like a family now; we share, we do everything together. when one is having problems, we look how to solve it, and when there is always a problem. i am always helping fred [the group facilitator], and so we are always looking for a way to solve it.’ (carol, code 3340) however, at 12 months, she tearfully explained that her husband was imprisoned, and she was struggling to hold down her full-time job whilst caring for all three children. she was also 6 months pregnant. whilst she was happy that her son was making progress, and importantly was almost able to stand, she had recently come to realise that james had substantial visual impairment. this was a shock to her, that she was coming to terms with, and she was tearful and concerned that he might need to enrol in a school for the blind. she was looking for support and guidance from the group facilitator to help her navigate the educational and treatment choices for her son. this case study illustrates the complexity of the empowerment journey, and mirrors the complexity of all the caregiver lives in this study, with the fluidity of changing support needs over time. in carol’s case, it was her husband’s imprisonment, and the changing care needs of her son, that impacted on her empowerment journey. for other mothers, it was shocks such as being forced to leave rented accommodation because of the stigma associated with their child’s condition, a husband moving out to look for a second wife or the loss of work because of their caregiving duties. discussion the article explores the journey of caregiver empowerment and the factors that shape this process for caregivers of children with disabilities. this offers a critique of the narrow understanding of what it means to ‘empower a family’ when the focus remains limited to the individual. our analysis indicates the pertinent influence of broader relational and structural conditions in impeding the impact of an empowerment programme on the lives of caregivers and their children. instead, we offer a more nuanced understanding of that journey as caregivers engage with a community-based participatory training programme in ghana. we found the metaphor of a journey useful, as proposed by cornwall (2016), to describe the empowerment process. the pathway is wide; some terrain is easier with gains in some dimensions of power, whilst other paths are more difficult to traverse, and they may need more help. there are also a variety of routes, reflecting the non-linear nature of their journey, as caregivers respond to changes in their often-precarious lives, including the changing care and support needs for their child. reynold’s model of empowerment provides a useful framework for illuminating the different dimensions of caregiver empowerment. in our study, it was evident that the individual power within was strengthened through the support group training. the value of this dimension of power should not be underestimated, given the profound levels of stigma and discrimination that are commonly experienced by caregivers, primarily mothers, for having a child with a disability (world health organization & world bank 2011), and specifically the high levels of self-stigma and self-blame that are common to this group (nyante et al. 2017). it may be that without developing power within, it will be difficult to achieve other aspects of power, but we also argue that the reduction of empowerment to individual agency alone is too limited. the findings also illustrate, within the family ecosystem, that the power to take decisions and actions was facilitated or impeded by the hierarchy of kinship structures and the gendered nature of caregiving. this aligns with the need for greater understanding of the nature of human relationships in society and how that influences power (green 2018). additionally, within empowerment theory, there is a need to strengthen our understanding of how disability-related stigma plays out within the family context and interacts with power dynamics, within any model of empowerment. in terms of power over economic and political resources, the linkages between poverty and disability are increasingly well documented (banks & polack 2014; groce et al. 2011), but this literature is often focused on the adult with a disability, with less evidence of the impact of poverty on children and their caregivers. in maslow’s hierarchy of basic needs, he argues that physical survival needs must be met first before people can feel belonging and self-esteem and maximise their self-potential (mcleod 2007), and therefore operationalising empowerment for caregivers requires better understanding of the intersectionality with poverty. we would argue that important changes occurred in caregiver feelings of self-worth and self-esteem that were essential stepping stones on their journey, but extreme poverty still limited their self-potential, when the main concern for some was putting food on the table. in the context of poverty, life is precarious for any family, but this research illustrates the augmented vulnerabilities brought about by having a child with a disability and how this shapes the possibilities for empowerment. therefore, drawing together these different experiences, our study shows that if we want to take a more transformative approach to maternal and child health for children with disabilities, it requires approaches that permeate the outer circles of the child and caregiver ecosystem. this is about a closer alignment with empowerment theory, which was always about looking at different dimensions and levels of empowerment and never only about the individual, even if that is more difficult for us to evaluate. there can be a tendency in the framing of family-focussed disability programmes, ours included, to lean more on the psychological framing of empowerment, about fostering change in the individual caregiver, but this study shows that it is about relationships, networks and structural issues. although not a focus of the initial programme, on completion of the study, the caregivers engaged collectively on a local advocacy activity through the local community radio to raise awareness about their issues. other studies have similarly shown the power of collective agency for change by caregivers of children with disabilities (elphick et al. 2015) and for improving community-level maternal health traditional practices (badas et al. 2011; morrison et al. 2010). this is an important element that could be strengthened within the future development of our programme. a study of self-help groups for caregivers of children with disabilities in kenya also demonstrated that caregiver empowerment was associated not only with newly developed skills but also social connectedness and resource mobilisation (bunning et al. 2020). if we return to theories of empowerment, we would argue that it is also valuable to look at who can play a key role in the reorientation of power within the ecosystem layers. in our study, the group facilitator played a crucial role in brokering power over local social and political processes and thereby facilitating easier steps for caregiver empowerment. local community health or education professionals are part of the invisible and hidden power structures (gaventa 2005) and thus are often better positioned to engage with these processes. there should not always be the expectation that caregivers, mainly women, can always be the prime agents of change, given that a range of factors coalesce around caregivers, including poverty, stigma, poor levels of education and gender, which may limit their ability, even collectively, to engage with social and political power processes. at the same time, we also recognise the possible tension with creating dependency on a facilitator, and this is similarly explored in a critique of disability care in africa (morvan et al. 2014), or with cbr workers, who do not necessarily have the skills to foster empowerment (rule 2013). this aligns with the argument made to enhance facilitator skills with a ‘fifth power’, the ‘power to empower’, as proposed by robert chambers (2012). finally, our study also calls for an improved understanding that the empowerment process is not always a linear one, especially when lives are so fragile. and given this fragility, and the long-term support needs for children with developmental disabilities, the empowerment journey is never likely to be a quick process; caregivers will have different support needs at different times. this is summed up in a discussion on women’s empowerment: ‘when we find the path we wish to tread, first walk in front of us; then, when we are stronger, walk beside us; and finally, when we are truly strong, walk behind us’ (batliwala 2015). we therefore need to be more realistic about operationalising theories of empowerment in practice for parenting programmes in low-resource settings. limitations of study future research would benefit from observations of the support group and of the home visit and understanding more about the role of the group facilitator. it would also benefit from revisiting the families after a longer time period in order to understand how some changes have evolved and are sustained. the families in the study were in areas supported by the local partner, the presbyterian church of ghana, which typically works in areas of greater deprivation, and many of our families were the ultra-poor, where poverty was likely to play a greater role and where there were very low levels of caregiver education. ultimately, this training is intended to improve outcomes for children with disabilities, and as such, children should also be taken on an empowerment journey. in this study, the majority of the children were under 5 years, but in any future study with older children the issues of children’s empowerment should be explored. conclusion new global maternal and child health strategies call for a more transformative approach, with women and children as agents of change. empowerment is also core to the who cbr guidelines. despite much work over the years on empowerment as a theoretical construct, research on how this works in practice for families of children with disabilities in low-resource settings is limited. we illustrate some important gains in caregiver empowerment as caregivers engaged with a participatory training programme in ghana, in particular in terms of improvements in power within the individual. however, there are also multiple ways in which caregivers do not have access to decision-making; the gendered nature of caregiving, the intersection with poverty and disability-related stigma are key factors that limit their agency. we illustrate the lack of power over sociopolitical processes and the potential benefit of someone who can play a brokering role. there are limitations to any approach that places too much emphasis on individual agency and improved self-efficacy. a strengthened intervention needs to permeate the layers of the ecosystem in which the caregiver–child dyad is embedded, combined with addressing structural issues to foster a more enabling environment. there are important lessons to be learnt if we want to transform the lives of children with disabilities, and their families. acknowledgements the authors thank marjolein baltussen and jedidia abanga for their support throughout the project. thank you to martine collumbien for her discussion on empowerment early on in planning this article. the authors would also like to thank the members of the ghana and international advisory board members, including maxwell akandem, norgrove penny, eben badoe, mel adams, david o’banion, sandra carsamer, melissa gladstone and cally tann. competing interests the authors have declared that no competing interests exist. authors’ contributions m.z. was the project leader, responsible for the research design; she conducted the interviews and was the lead on analysis and writing of manuscript. j.s. and t.s. supervised the research and contributed to the 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results discussion considerations conclusion acknowledgements references footnote about the author(s) shaun cleaver school of physical and occupational therapy, mcgill university, canada international centre for disability and rehabilitation, university of toronto, canada helene polatajko department of occupational science and occupational therapy, university of toronto, canada rehabilitation sciences institute, university of toronto, canada virginia bond social science unit, zambart, zambia department of global health and development, london school of hygiene and tropical medicine, united kingdom lilian magalhães department of occupational therapy, federal university of são carlos, brazil stephanie nixon international centre for disability and rehabilitation, university of toronto, canada rehabilitation sciences institute, university of toronto, canada department of physical therapy, university of toronto, canada dalla lana school of public health, university of toronto, canada citation cleaver, s., polatajko, h., bond, v., magalhães, l. & nixon, s., 2018, ‘exploring the concerns of persons with disabilities in western zambia’, african journal of disability 7(0), a446. https://doi.org/10.4102/ajod.v7i0.446 original research exploring the concerns of persons with disabilities in western zambia shaun cleaver, helene polatajko, virginia bond, lilian magalhães, stephanie nixon received: 02 nov. 2017; accepted: 31 aug. 2018; published: 29 nov. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: understandings of disability are rooted in contexts. despite the world’s significant contextual diversity, postcolonial power dynamics allow influential actors from the global north to imagine that most people across the global south understand disability in one generalised way. when it informs programmes and services for persons with disabilities in the global south, this imagining of a single generalised view could reduce effectiveness while further marginalising the people for whom the programmes and services were designed. objectives: in the interest of better understanding a contextually grounded meaning of disability, we explored the expressed concerns of two organisations of persons with disabilities and their members in western zambia. method: in this qualitative constructionist study, data collection focused upon life with a disability and services available to persons with disabilities. data were collected through 39 individual interviews and eight focus group discussions with 81 members of organisations of persons with disabilities. data were analysed thematically. results: the participants’ main expressed concern was poverty. this concern was articulated in terms of a life of suffering and a need for material resources. participants linked poverty to disability in two ways. some participants identified how impairments limited resource acquisition, resulting in suffering. others considered poverty to be an integral part of the experience of disability. conclusion: this study contributes to literature on disability theory by providing a contextually grounded account of a particular understanding of disability and poverty. the study also contributes to disability practice and policymaking through the demonstration of poverty as the main concern of persons with disabilities in this context. introduction in the contemporary postcolonial world, the global south and the global north are connected through mechanisms patterned by the ongoing legacies of colonialism (grech 2015). these mechanisms include political and economic structures that enable wealth and governance power to be drawn away from the majority populations in the lowand middle-income countries of africa, asia and latin america, to instead concentrate in the global north. indeed, it is the ongoing legacies of colonialism that make possible the phenomenon of the global south, in which diverse people and places share the common experience of having been colonised by imperial powers.1 with respect to disability, it is well accepted that the majority of persons with disabilities (pwds) live in the global south (world health organisation & world bank 2011). populations of pwds living in the global south are generally seen to face circumstances that are of a different nature than their counterparts with disabilities in the global north (singal & muthukrishna 2014). the often-difficult circumstances experienced by pwds in the global south have attracted the interest of several influential ‘international’ actors including aid agencies, non-governmental organisations and researchers from academic fields such as international development, global health and disability studies. although the actors attracted to the circumstances of pwds in the global south are international in the sense of being involved in multiple countries, they are often guided by the world views and priorities of the global north. one example of this would be a disability-focused non-governmental organisation that competes for grant money from national development agencies in the global north to fund programmes that operate in multiple countries of the global south. from the perspective of ‘international’ actors, it is possible to imagine the experiences of disability from diverse cultures and peoples according to a small number of homogenised narratives of disability in the global south (miles 2007). the dominant expression of a homogenised narrative of disability in the global south might be referred to as ‘the traditional model of disability’. when disability in the global south is viewed through the lens of this traditional model, a myriad of peoples and cultures are seen to understand disability as a supernatural phenomenon initiated by curses, compelling individuals to avoid experiencing shame by hiding or killing their family members with disabilities (ingstad 1999). it is true that there are reports that substantiate some elements of this supposed traditional model (e.g. bamu, de schauwer & van hove 2016; héraud 2005; muderedzi & ingstad 2011). nonetheless, it is unjustifiable to use these observations from particular places to support a generalised view about how disability is understood in the global south (ingstad 1999). problematically, such a generalised view can allow influential actors to overlook the actual world views and priorities of pwds in the global south. this generalised view can therefore be a distraction from important historical and contextual realities, further disempowering the supposed beneficiaries of disability-focused activities. the alternative to the perpetuation of homogenising narratives about disability in the global south is the accounting of experiences and perspectives of pwds that are grounded in the specific contexts in which they are expressed. through these accounts, it is possible to understand disability in diverse and specific ways. one way to surface these experiences and perspectives is to focus on the practical concerns voiced by pwds in specific contexts. although contextually grounded research about meanings of disability has been produced in other areas of the global south (see brégain 2016; burck 1999; chouinard 2014; devlieger 1995), there has not yet been research of this kind in western zambia. western province is the traditional homeland of the lozi people. prior to the colonial interruption, the lozi had developed an elaborate economy based on fishing, agriculture and cattle-herding on the rising and falling waters of the zambezi river on the barotse floodplain (gluckman 1968). in modern western province, there are several ethnicities but lozi language (silozi) and culture dominate among the population of approximately 900 000 inhabitants (central statistical office 2012). approximately 85% of residents live in rural areas, while the remainder are spread throughout towns and the provincial capital of mongu (cso 2012). the main economic activities for people in western province – including city and town-dwellers – are subsistence fishing and farming supplemented by small trade. within zambia, western province had the highest consistent levels of poverty (80.4% – 83.3%) and extreme poverty (64.0% – 64.6%) in 2006 and 2010 as measured by the zambian central statistical office (2012). with geographic isolation, strong ties to traditional culture and high levels of poverty, there is reason to believe that western zambia has a unique context in which to experience disability. the purpose of this study therefore was to explore the expressed concerns of the members of two organisations of pwds and their members in western zambia. the study team comprised a phd student and his advisory team. the phd student and first author is a researcher and rehabilitation professional from canada. the advisory team, senior academics, comprised three rehabilitation researchers working at canadian universities, two with canadian backgrounds and one originating from brazil. the fourth member was an anthropologist based at a research institution in zambia with a british background. the study activities were supported through the work of five paid research assistants, based in zambia, who were post-secondary students from western province. research method and design study design the study was guided by a qualitative constructionist methodology (silverman 2006) with participatory (herr & anderson 2005) and critical considerations (eakin et al. 1996) as part of a doctoral dissertation (cleaver 2016). it is accepted in qualitative constructionist methodology that researchers and participants co-construct meanings (silverman 2006). the key features of a critical social science perspective as described by eakin et al. (1996) – reflexivity, assumptions and ideology, power, contradiction and dialectic – were an ongoing consideration throughout the study process, influencing the study framing, design, data collection and analysis. the sampling for this study was purposive to identify the organisation, but then also included the use of convenience sampling to deal with one unanticipatedly large organisation. sampling and recruitment the research fieldwork was conducted in zambia’s western province between march and august 2014. the study team purposively recruited two organisations of pwds (one urban and one rural) and their members to participate in this research. the decision was made to sample organisations rather than individuals alone to gain insight into disability organising and to allow for a more indigenous view of disability by relying on pre-existing structures. according to the preamble of the zambian (2012) persons with disabilities act, an organisation of pwds exists to ‘promote and protect the interests of persons with disabilities’, while ‘most of its members are persons with disabilities’. furthermore, it was foreseen that conducting the research with organisations would increase the likelihood that this research would complement ongoing initiatives. to identify these organisations, contacts from local government offices shared connections with one organisation in a peri-urban neighbourhood of mongu (urban) and another in a series of villages in an outlying district (rural). contact for each of these organisations began with a request for a meeting with the leadership to discuss the organisation’s potential participation in the research. in both cases, the leaders agreed that participation was in the interest of the collective. we then approached members individually to discuss the research objectives and design and their individual participation. the original intent was to approach all the organisations’ members, but this strategy was revised for the rural organisation – to a combination of convenience and purposive sampling – when it became clear that the membership was larger than originally anticipated (cleaver et al. 2017). consistent to the structures of the organisations, parents participated on behalf of their children (18 years and under) with disabilities who were members of the organisations. written consent was obtained from each participant during a meeting with a research assistant in a language of the participant’s choice. as a group, the research assistants were fluent in multiple zambian languages that participants were likely to use locally on a regular basis, allowing the study team to allocate an assistant according to the participants’ language preferences. the key message at this initial meeting with the research assistant was that the purpose of the research was knowledge generation for practical purposes – such as informing the advocacy efforts of the organisations – and not the direct provision of resources to individual participants or the organisations. participants two organisations and a total of 81 individual members participated in the study. twenty-two of the participants were members of the urban organisation (see table 1). this organisation identified its members according to a limited number of categories. for simplicity of presentation, the participants are described in table 1 according to impairment types that approximate the organisation’s own categories. eight of the members had family members participate in study activities with them or on their behalf. table 1: participant demographics. fifty-nine participants were involved with the rural organisation (see table 1). this group had a more fluid approach to membership, but had nine individuals (seven men and two women) who were consistently considered leaders. in addition, 50 ‘other members’ participated in the research. the rural group did not use a system to categorise the disabilities of the membership; instead, each member described the nature of his or her disability in his or her own terms. these descriptions varied widely, including references to body parts (e.g. leg, eyes), function (e.g. falling, i cannot see well, he does not work if he does not eat), disease states (e.g. leprosy, polio), healthcare interventions (e.g. they put wires in the legs), perceptions of deviance from expectations (e.g. not normal) and advanced age (e.g. elderly). we organised these individualised descriptions into impairment types in table 1. data collection for each organisation, data were collected from an initial round of focus group discussions, followed by semi-structured individual interviews with many of the organisation members, and then a second round of focus group discussions (see table 2 for the numbers of activities and individuals involved). the actual number of data collection activities varied according to circumstance and was negotiated together with the organisations at community meetings. data collection activities were premised upon a gradual relationship-building process, structured and sequenced to include both collective and individual activities, and designed to minimise the extent to which the phenomenon of disability was defined by the researchers prior to entering the field. the first round of focus group discussions and the interviews were based upon questions about life with a disability, supported by probes about the positive and the negative aspects of life as it relates to disability. the second round of focus groups included discussion of specific activities, services and initiatives that were available in the communities where participants lived. the data collection activities were limited to the two participating organisations and did not include any other organisations. table 2: data collection activities. the first author led these activities speaking in english, while participants communicated in the language of their choice, and a research assistant performed real-time translation where necessary. most participants opted to communicate primarily in the regionally dominant language of silozi, although some participants chose english (verbal and written), sign language, or the less-common local languages chimbunda and makoma. all data collection activities were audio-recorded with the participants’ permission. research assistant team members transcribed all speech in the actual languages spoken using a comprehensive transcription guide developed by the team. data analysis data analysis began with a detailed review of all transcripts while listening to the audio files. the detailed review was used to guide an iterative analytic process, where initial ideas were used to generate subsequent questions of the data. queries and answers generated during the iterative analytic process were transformed into visual schema and written documents to further organise ideas and eventually distil the themes presented in this article. visual schema and written documents were used to generate further discussion and reflection as part of a process to gradually refine the analysis. ethical considerations this study was approved by the university of toronto health sciences research ethics board protocol reference #: 29653), the university of zambia humanities and social sciences research ethics committee, and the zambian ministry of health. to reduce the burden of participation, participants’ travel costs were paid when there was motorised transportation available for hire, and a group meal was provided for large meetings and focus group discussions. participating individuals and organisations are identified in this article in general terms to allow the reader to understand their situation without revealing the identity of the participants. in conducting the research, we followed critical (eakin et al. 1996), postcolonial (grech 2009; meekosha 2011) and global health (canadian coalition for global health research 2015) ethical research principles that consider the well-being and agency of participating communities with collective interests and concerns, and recognise that academic research is conducted within a dynamic of power relations. results the objective of this inquiry was to explore the expressed concerns of two organisations of pwds and their members. the analysis of data collected during study activities showed that the accounts expressed by the participants were dominated by a single concern: poverty. participants spoke about poverty in a particular way through the interconnected phenomena of a need for material resources and a life of suffering; this concern was inherently tied to the experience of disability. material resources and suffering: a particular understanding of poverty participants in this research spoke frequently and emphatically about their suffering as part of a life with disability, and about their need for material resources. effectively, these two ideas were interrelated, such that the lack of one was the cause of the other. as stated by an older woman with leprosy: ‘since my disability has found me, there has been no one to build me a house, there is no one to find me food, there is nothing. who will help me with this suffering?’ (participant #r028, female, age described as ‘elderly’) the reverse was also true: if a person received material resources, it would improve their situation and alleviate suffering. as stated by a man with a physical disability: ‘like for me the way i feel, if i find someone giving me money, i will see that i have been helped and then they can improve my life.’ (u001, male, 32 years old) the interrelationship between the two concepts of this particular understanding of poverty can be conceptualised as two sides of the same coin, where the sides are fused together, such that both are present even if only one is apparent at any given moment. in a similar fashion, the participants’ accounts of a life of suffering were attached to frequent references to a lack of material resources (see figure 1). conceptualising the participants’ concern as a single two-sided entity – poverty – facilitates the process of examining the relation of this concern to disability. figure 1: poverty conceptualised as a two-sided coin. one side of the coin: disability is a life of suffering participants overwhelmingly described the experience of their disability negatively, often using the silozi terms manyando or butata. collectively, these terms can be translated as problems, difficulties, a hard life or misery (barotseland.net n.d.), but the research assistant interpreters most frequently translated these as suffering. for example, when organisation members participating in a focus group discussion were asked about their lives, an older man with leprosy stated ‘kona kuli luikutwanga manyando’ which translated as: ‘we feel that we are really suffering’. in a different focus group discussion, another man with a congenital spinal deformity spoke about life for pwds in his village as ‘a life of suffering’ (‘bupilo bwa manyando’). participants generally did not describe what was meant by suffering. when probed about the specifics of suffering in discussions about life with a disability, some participants identified aspects of anguish. for example, a woman with leprosy stated: ‘you cannot sleep all the night; you are there thinking about your suffering.’ (r005, female, 69 years old) another participant, a man with a visual impairment, stated: ‘our disability, it is just suffering. we have a lot that is in the heart.’ (u002, male, elderly) it seemed almost as if the meaning of suffering was sufficiently self-evident to participants to not require an explanation. despite not describing the meaning of suffering, participants regularly related this to life with a disability. for example, the older man with leprosy declared: ‘it is disability that brings that suffering; when someone is not disabled, the person cannot suffer.’ the other side of the coin: a lack of material resources the other prominent theme in the data was a lack of material resources. in this article, the term ‘material resources’ is a composite one, encompassing both (1) money and (2) items and services that can be purchased with money. in table 3, there is a list of examples of material resources that participants mentioned in the context of discussing life with a disability. in many instances, the participants spoke about specific items (e.g. a new house, fertiliser, hair dryers), whereas in others there was discussion about money, and how items could be purchased if a person had access to money. table 3: material resources that participants stated they did not have and/or needed. participants spoke about material resources as items that they needed but did not have, and were unable to acquire. during the data collection activities, participants regularly directed the discussion away from other topics introduced by the first author, directing the discussion towards material resources instead. participants would sometimes advance this topic of discussion through straightforward declarations that a resource was needed or desired. in other instances, participants discussed not having something (or enough of something) and how this was a problem. in still other instances, participants spoke positively about situations where they had received resources in the past or could potentially receive them in the future. one example of an account celebrating previous material resource distributions came from a man with leprosy. he described, in detail, the story of a foreign missionary who had formerly lived in his community, but had collected money in his country of origin to provide various support. as part of this account, he stated that: ‘in each place [the missionary] asked for one person who is educated who will be writing the report … and writing the names of people who were living in poverty. … now he gave the order to say “these people now, you should build houses for them, these people who do not have one. a house and a kitchen and a fence”.’ (r002, male, 65 years old) when discussing material resources – the lack thereof, the need for more or previous distributions – participants often related these to suffering or its alleviation. just as participants had made connections between suffering and disability, they also connected suffering and material resources. as stated by a participant in a focus group discussion: ‘i wanted to talk on the problems people with disabilities face here. it is very hard, because here you cannot find money so that you survive.’ (r130, male, 32 years old) in a different focus group discussion in the rural community, in response to the question ‘is there anyone else who has something to add on what it is like to live with disability here?’, one man shouted the reply: ‘it is suffering because you cannot work so that you find food for you to eat.’ (r015, male, 50 years old) some material resources were presented as items the participants needed for their own personal use, such as better housing or food rations (i.e. bags of flour for the staple meal). as stated in a focus group discussion: ‘for me the only problem is my eyes. but i need someone to help me. there is no one to build a house, so what i want is just help from you. and you give me food.’ (r127, male, elderly) in other cases, the reference to the resource was with respect to the utility of material resources for earning more income. when asked about the positives of having a disability in a focus group discussion, a woman with a physical disability that limited her capacity to walk said: ‘i am even talented on hair styling. i am a hair stylist. i can plait any type of a style for hair any type that a person wants. i can do it, but i do not have money to start my own salon.’ (u010, female, 26 years old) for this woman, having a salon meant renting a market stall and purchasing some hand-held hair dryers – modest investments, but ones that required more money than she could access. occasionally, participants were ambiguous as to whether the resources would be used for personal use or as income generation. examples included needing money to pay an individual to collect firewood, to cultivate a garden or to assist with fishing. this is exemplified by a participant with a visual impairment, stating: ‘[before i contracted cerebral malaria] i was able to cultivate or plough with my own hands but these days i cannot see. i was able to go fishing, paddling in the canals, but now i cannot. i can do these things if i have someone [to help me do them]. and that person needs to be paid. but where am i going to get the money?’ (u007, male, 67 years old) ways in which the poverty coin linked to disability participants presented the concern of poverty as inherent in their experience of disability. during initial interactions, participants generally identified their disability in very similar terms to the specific embodied state of having an impairment (world health organisation 2002). they then linked this state to the poverty coin in patterned ways. two of these patterned ways were (1) impairments impeding resource acquisition, resulting in suffering, and (2) poverty as an integral part of the experience of disability. impairments impede material resource acquisition, resulting in suffering in some of the participants’ accounts, the link between impairment-related functional limitations, a lack of material resources and a life of suffering was described as a series of causal steps. often, the situation involved only one step, where an individual’s impairment reduced employment opportunities or the ability to farm for food or income. as stated by a man with difficulties walking and speaking: ‘we are really living in poverty. like the others have said, when there is work, we people who are disabled cannot do it. even when you try to go there, they will tell you, “you, you cannot do it.” and that is really the truth, that you really cannot.’ (r015, male, 50 years old) another participant spoke about how his inability to walk limited the activities that he could do and the compensation he could earn from these activities when clients chose to not pay: ‘like for me i cannot say “i can go and cultivate, i can go and fetch water,” or “i can go and do this.” because even this thing in which i am seated, i need to find someone push it. but god has given me the knowledge of how to repair shoes. but again, if a request a certain price to say, “maybe i can manage to buy a cup of flour or something, so that i feed myself,” they refuse also. now them, they want to be able to choose how much to give me. because they know that i have no option, there is no way i can refuse their money, and that “i can give him this money” because they know i am disabled i have no option, i just have to accept the amount.’ (r009, male, 59 years old) in some cases, it was the impairments of children who kept the parents at home. these limited opportunities to acquire or generate resources are thus the primary and direct explanations that underlie the participants’ lives of suffering. the mother of an 11-year-old girl considered to have an intellectual disability by the organisation gave an example of this when she expressed (u009): ‘i cannot do a business which will need me to walk or travel to go very far, leaving her. i cannot leave her.’ participants spoke of how an infusion of material resources could offer an alternative path to success without requiring any change to their own specific impairment, or the impairment of their family member. for example, a gift of a sewing machine would allow income generation in the home so that the mother quoted above could simultaneously care for her child with a disability while earning money to eliminate suffering, thereby overcoming the problems of poverty. another example of this phenomenon came from a woman with a physical disability limiting the use of her hands. this woman spoke about how she had previously purchased fish and then travelled with it elsewhere in the country to re-sell it at a profit. as she had used the money to pay for school fees for a child, she no longer had the money to generate income. nonetheless, the participant was confident that her fortunes would change with monetary support to travel to the flood plains for the purpose of buying fish: ‘right now i do not have the money; if i did i would have gone even a long time ago.’ (u006, female, 39 years old) in other cases, there were multiple steps separating the participants’ current situation of poverty from their aspirations. an example of this was the one woman with a physical disability who was hoping to find money to buy hair dryers and open a salon. according to the woman, her difficulties walking reduced her income generating capacity, which, in turn, inhibited her from being able to amass capital to start a business which would provide further income to pay for a return to school to study to be a professional. the woman’s account of her current situation was one of stagnation and struggle, working as a hairdresser for salon owners for little money to provide basic needs for her son. by contrast, a positive cycle could have been activated through loans or grants of money or materials that would have allowed her to start the business. the poverty coin as an integral part of the experience of disability in many accounts, the relationship between a lack of material resources and suffering was not a series of connected steps, but one where disability was integrally understood to apply to individuals who identified as having an impairment while living the two-sided coin of poverty. when invoking this pattern, participants spoke about poverty and disability interchangeably, as if they were using two synonymous words to describe a single phenomenon. one example of this phenomenon occurred during a focus group discussion. the participants were speaking about the suffering experienced by pwds. one man with a physical disability added: ‘what i have seen in life is if you are disabled but you are working, you are doing a business, people will respect you for that. for you who does not have anything and you are disabled, you are poor. no one can respect you, even the family members cannot respect.’ (u003, male, 68 years old) from the quote above, it might seem that disability and poverty could be teased apart such that a person with a disability doing a business would garner respect. the first author asked a follow-up question to confirm that this was the case: first author: i would like to find out how things are different for persons with disabilities who own businesses as compared to people without disabilities who own businesses? participant: we differ because some people, maybe when they come to visit you if you are doing a business you will be able to give them something but if you do not have a business which you are running, even when they ask you something you cannot give them anything because you do not have, and so you are not regarded. … all [of the problems of poverty are] brought because of being disabled. instead of following the first author’s question of comparing the experience of business ownership and wealth among persons with and without disabilities, the participant responded with a different comparison: the poor and disabled as compared to the rich and non-disabled. although it seemed possible to isolate comparisons of wealth (regardless of disability) or disability (regardless of wealth), additional discussion demonstrated that these notions were expressed and understood in nearly interchangeable terms. in the account of another participant with a physical disability, wealth and function were also bundled and contrasted to poverty and dysfunction. following the participant’s self-identification as a lame person [sic], the first author asked, ‘if starting tomorrow everyone forgot that you are “a lame person,” but nothing else changed, would your life be the same or would it improve?’ the man’s reply demonstrated how perceptions of lameness were simultaneously premised on a poverty of possessions as well as an inability to do things: ‘ah, on that way i was going to be grateful because maybe this mocking is coming because of what i have or what i do not have because of being poor. but if they see me that, ‘that person this time has got this; he is able to do this,’ they will give me respect.’ (u005, male, 41 years old) given the man’s situation of impairment-poverty, he considered the organisation of pwds to provide him with a ‘very big help’. this caused us to wonder about the strategies used by this man’s neighbours, who from casual observation seemed to be equally poor, but likely did not claim to be disabled. from the perspective of this man, the situation of persons without disabilities was not one that interested him: first author: your neighbours who do not have disabilities, do they form groups or other things to try to make their voices stronger? participant: i cannot answer that question because i do not know how they are living. as is seen from these examples, it was as if it was only pwds who could be poor. meanwhile, as demonstrated with the data above, being rich (i.e. doing a business, having things) was the categorical opposite of being disabled. in parallel, the possibility of poverty among people without disabilities was not a phenomenon of interest for the participants. when participants spoke about poverty as being integrally part of disability, it seemed taken for granted that the coexistence of needs and the inability to meet them were the defining elements of being a person with a disability. the proposed solutions were therefore gifts of material resources to directly meet their needs. discussion this study is the first to explore disability through a contextually grounded investigation in western zambia. we asked pwds in this context about their lives with disabilities (including positive and the negative aspects thereof) and the specific activities, services and initiatives that were available in the communities where they lived. in response, a wide variety of participants from both organisations referred to living a life of suffering and of having a lack of material resources. taken together, these references can be conceptualised as poverty. the frequency and emphasis of the participants’ concerns, and the ways in which these were linked to disability, demonstrate the centrality of poverty in the collective meaning of disability in this context. this study offers a rare perspective of disability in western zambia, but also has important implications for the literature on disability theory and the relation of disability and poverty, in addition to implications for policy and practice. implications for literature on disability theory the participants’ concern for poverty could have been consistent with any one of multiple models of disability, particularly the charity and medical models (clare 2001). consistent with the charity model, some participants spoke about poverty and disability as being conceptually intertwined, as if pwds could never expect to work their way out of poverty. consistent with the medical model, some participants spoke about impairments as being a root cause of their poverty. in comparing the findings of this study to literature about disability in the global south, it is remarkable that participants’ concerns were not aligned to the pervasive myths (ingstad 1999) that we identify collectively as ‘the traditional model’. participants did not report anecdotes of pwds being hidden away by family members, nor did they discuss the infanticide of children with disabilities. the design of this study does not allow us to conclude that hiding and neglect are completely absent in western zambia; it is possible that these practices occur, yet they were not front-of-mind in the collective consciousness of those most likely to be concerned by them. it is also remarkable that participants in this study expressed numerous and emphatic perspectives about the effects of their disabilities, but very little about the root causes. during the interviews, we asked participants about the history of their disability, including the way it began. the participants answered our questions, but they devoted little interest and consideration to explaining their views on the causes of their disabilities. the implication of this study for literature on disability theory is to provide yet another contextually grounded example to contradict the homogenising narratives of influential ‘international’ actors, particularly the narrative that most people in the global south consider disability to be caused by supernatural phenomena (grech 2015; miles 2007). implications for literature on disability and poverty this study was designed to be exploratory such that the concerns of the participants could emerge, regardless of what those might be; while we anticipated at the outset of the study that concerns aligned with the ‘traditional model’ might be prominent, we did not foresee the centrality of poverty. through data analysis, it became clear that these participants spoke about poverty in various ways. these patterns provide insight about how the participants might understand poverty and its relationship to disability. issues of disability and poverty have garnered increased attention in recent years through specific attention in the united nations (2006) convention on the rights of persons with disabilities (uncrpd) and through research and publications (e.g. eide & ingstad 2011; pinilla-roncancio 2015). despite not being designed to focus on poverty, this study adds perspectives to the literature on the topic. building a qualitative understanding of poverty from participants’ expressed concerns much research on disability and poverty has taken a turn away from an economic resources approach (palmer 2011), adopting instead a capabilities approach (muderedzi et al. 2017; sen 1993; trani et al. 2017). in this study, the expressed concerns of the participants were clearly focused on material resources, a finding that is consistent with the economic resources approach. as it was not a focus of this study to quantify indicators of poverty, we did not attempt to accurately compare the individual or household situations of research participants with each other or persons without disabilities. however, from our informal observations in the community, it appeared that most community members (with and without disabilities) were of similarly poor economic status. indeed, in a zambia-wide study that did compare individuals and households with and without disabilities, the overall findings were that household wealth was similar, although there were important differences with respect to education and employment levels, with poorer access for pwds (eide & loeb 2006; trani & loeb 2012). if the results of the zambia-wide study are consistent with the two communities where the participants lived, the expressed concerns presented here could be indicative of widespread poverty that is understood through economic resources but felt more deeply by pwds because of multidimensional considerations (trani & loeb 2012). the relationship of disability and poverty most commonly, disability and poverty have been presented as a vicious circle (yeo & moore 2003), such that experiencing one increases the probability of experiencing the other. if we understand disability to be impairment-related function, many participants in this study framed their situation in a fashion that is similar to one half of the vicious circle: that their disability contributed to their lack of material resources, which was the foundation of their lives of suffering (see figure 2). when speaking about things in a cyclical manner, participants did not draw upon a disability-causes-poverty-causes-disability framework but instead spoke about how a lack of material resources made it difficult to generate or acquire additional material resources; in effect, that poverty-begets-poverty (pagani 2007). figure 2: typical and alternative presentations of the relationship of disability and poverty. it must be noted that many of the participants did not articulate the narrative that their impairment-related function initiated their situation of poverty; instead, impairments were part of the description of disability, but only coincidentally part of the experience. meanwhile, poverty was integral to the experience of disability. as shown in the alternative presentation of disability and poverty (see figure 2), when disability is understood in this manner, there seems to be only minimal, if any, ongoing connection between disability and impairment. furthermore, a poverty as integral to disability perspective can be related to other descriptions of the relation of disability and poverty. two years after writing about the vicious circle, yeo (2005:34) proposed that disability and poverty ‘would be better described as interlocking circles’, because of the common experiences of marginalisation, isolation, deprivation and lack of access. yeo’s (2005) proposal might be more similar to the narratives of participants in this study, except that interlocking circles imply that there can be poverty-without-disability and disability-without-poverty. instead, participants spoke of a disability or poverty in which everyone who was disabled was poor and where poverty was experienced uniquely by the disabled. in empirical research in a rural area of south africa, hansen and sait (2011) proposed that research participants experiencing extensive exclusion and social suffering identified themselves as disabled. hansen and sait’s (2011) proposal would seem to fit the data from this study well. implications for policy and practice in the results of this study, poverty was more prominent in the accounts than impairment and function, and also more prominent than other possible considerations. the implication for policy and practice is to mainstream the concern of poverty into disability activities. one specific example of the way that poverty could be mainstreamed into disability activities is to compare these perspectives to a prominent template for programming for pwds: the community-based rehabilitation (cbr) matrix (khasnabis & motsch 2010). of the five components of the cbr matrix, the participants’ concern was weighted very heavily towards the livelihood component. furthermore, participants spoke about each of the elements of the livelihood component with regular reference to self-employment, waged employment, financial services and social protection. meanwhile, the participants’ references to other components of the cbr matrix were generally subservient to livelihood considerations. an example of this is health. concerns related to the health component of the cbr matrix were rarely brought forward by participants. when participants were asked questions related to the health component elements of disease prevention, medical care and rehabilitation, the participants responded with general disinterest, even when acknowledging that these services were not available to them. considerations we conducted this study in a particular context. in qualitative constructionist research, context is not seen as a source of bias that interferes with the accuracy of research results and must therefore be eliminated (silverman 2006). instead, research is seen to be constructed in contexts and it is the role of the researcher to consider the context as part of the interpretation. the larger context of this study was western zambia, a jurisdiction that we describe in detail in the research method and design section of this article. within the larger context, the research was produced in a more particular context: through interaction between a researcher with a specific appearance and life history and members of local organisations of pwds. in some ways, this particular context constrained possibilities for the project. examples of possibilities constrained by researcher–participant positionality in this project included the difficulties of fulfilling principles of authentic partnership and shared benefits (‘author’ et al. 2016), both of which are important participatory research considerations (herr & anderson 2005). in contrast, the respective positionality of the researcher could have been productive, increasing the interest of organisation members to participate in the research and stimulating them to share their experiences – albeit in certain ways. in this particular context, it would have been reasonable for the participants to have seen the first author as a person who might be connected to resources. accordingly, it would have been relevant and practical for the participants to emphasise their concern for poverty, a concern that the first author could be seen to be well positioned to address. the study’s particular context does not mean that the participants’ concern for poverty was an artefact produced only in the presence of the first author: the consistent, persistent and detailed accounts of disability experienced as suffering and material resource deprivation made for a very compelling concern. moreover, there is evidence to suggest that the two organisations – each of which had a history pre-dating the arrival of the first author – evolved according to the availability of outside programming, especially programming related to material resource acquisition (cleaver et al. 2017). given the north-south dynamics of the contemporary postcolonial world, the particular context of this research might not be all that particular; indeed, it could merely be one case among many where the concept of disability is produced and reproduced interactively through power and resource imbalances. also, this was a context where the research participation was limited to those who were members of organisations. the focus on collectives meant that it was not possible to explore the first-hand experiences of pwds in western province who were not attached to an organisation, which would, in turn, exclude the participation of any pwds who were being socially isolated by family members at the time. recognising that ‘international actors’ engaged in disability activities in the global south have come to expect accounts of stigma, shame and the isolation of pwds, we are compelled to declare that this study was not designed to seek out such cases, if they exist. a final consideration of the particular context of this study is the analytic impact of approaching organisations as participants. in part, it was because of the collective orientation that the analysis focused initially on the commonalities within and between the organisations, rather than searching for contrasts between the collectives or individual members. the analysis of these data has not included potentially important differences within the groups, such as that of gender, age, wealth, social status or ‘disability type’. considering that the experiences of pwds are not homogenous (miles 2003), various sub-group and individual analyses could yield important insights. conclusion the members of two organisations of pwds in western zambia who participated in this constructionist research expressed overwhelming concern with poverty. this concern was expressed through the interrelated phenomena of a life of suffering and a lack of material resources (i.e. money or things that could be exchanged for money). these findings contribute to the growing interest in poverty and disability through the articulation of contextually grounded formulations of the ways in which these phenomena are conceived and the identification of associated policy and practice implications. finally, it was notable that the concerns of these pwds in western zambia were incongruent with the notion that understandings of disability in the global south are dominated by ‘the traditional model of disability’. acknowledgements shaun cleaver was supported by a canadian institutes of health research (cihr) fellowship and a w. garfield weston doctoral fellowship. stephanie nixon was supported by a cihr new investigator award. in addition, the authors are extremely grateful for important assistance from colleagues at the zambia federation of disability organisations (zafod) and the western province offices of the government of zambia’s department of social welfare. fieldwork activities were made possible through the contributions of patrah kapolesa, malambo lastford, akufuna nalikena, chibinda kashela and aongola mwangala as research assistants. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.c. was the first author and phd student conducting the research. h.p., v.b., l.m and s.n. were dissertation committee members who advised the development of the research, its conduct, data analysis and the writing of this manuscript. references cleaver, s., 2016, ‘postcolonial encounters with disability: exploring disability and ways forward together with persons with disabilities in western zambia’, doctoral dissertation, university of toronto, toronto, canada. cleaver, s., magalhães, l., bond, v., polatajko, h. & nixon, s., 2016, ‘research principles and research experiences: critical reflection on conducting a phd dissertation on global health and disability’, disability and the global south 3(2), 1022–1043. cleaver, s.r., magalhães, l., bond, v. & nixon, s., 2017, ‘exclusion through attempted inclusion: experiences of research with disabled persons’ organisations (dpos) in western zambia’, 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reifies the dominance of high-income countries. we recognise this critique. nonetheless, we find analytic value in considering how the legacy of colonialism has had similar effects in different places. following the work of others writing in the field of postcolonial disability studies (e.g. shaun grech and karen soldatic), we see the commonalities of this legacy in multiple locations in the global south. abstract introduction south africa’s legislative framework conceptual framework research methods and design findings discussion acknowledgements references about the author(s) armand bam stellenbosch business school, faculty of economics and management science, university of stellenbosch, cape town, south africa samantha kriger department of general education and training (get), faculty of education, cape peninsula university of technology, cape town, south africa zelda cottle stellenbosch business school, faculty of economics and management science, university of stellenbosch, cape town, south africa citation bam, a., kriger, s. & cottle, z., 2023, ‘a (mis)guidance of disabled youth: post-secondary schooling transition experiences in south africa’, african journal of disability 12(0), a1293. https://doi.org/10.4102/ajod.v12i0.1293 original research a (mis)guidance of disabled youth: post-secondary schooling transition experiences in south africa armand bam, samantha kriger, zelda cottle received: 19 july 2023; accepted: 21 sept. 2023; published: 14 nov. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: globally, there is a disparity that exists between equal employment opportunities for people with disabilities post-schooling. while south africa has aimed at the inclusion of people with disabilities, there has not been sufficient evidence of a successful transition from school to work environments. objectives: this study documents the experiences and barriers that influence the preparation of high school students with disabilities for post-secondary education and work opportunities. method: a qualitative research methodology employing multiple case study design was used where semi-structured in-depth interviews were conducted with youth between the ages of 18 years and 36 years who were currently employed. the participants were identified through purposeful sampling. data were analysed by thematic analysis. results: the findings indicate two overarching themes indicating that the career choices of participants, firstly, were significantly influenced by teacher and guidance counsellor expectations and, secondly, experiences of discouragement where personal agency and autonomy were limited. conclusion: this study illuminates the need to enhance the decisions around careers for people with disabilities which should debunk the expectations of society. contribution: this study will make teachers, mentors and counsellors more aware of their contribution, influence and support to youth with disabilities as they transition into the workplace. keywords: disabled youth; employment; inclusion; transition; career guidance. introduction despite developed inclusion legislation, transition policies and financial resources, a failure to promote entry to further education, economic opportunities and independent living for people with disabilities persists in south africa (sa) (bam & ronnie 2020). although more people with disabilities are able to gain access to educational opportunities, high school graduation rates in general for people with disabilities continue to lag behind that of non-disabled peers (francis et al. 2018; kirby 2017; kloos, nacik & ward 2022). moreover, high dropout rates remain a leading contributor to the deepening social, environmental and economic exclusion that people with disabilities experience (lindsay et al. 2019). in the global south, dropout rates within the education system are particularly high during transition phases (hanushek, lavy & kohtaro 2008), and because of the coronavirus disease 2019 (covid-19), this has been exacerbated (inglis 2023). this in effect has contributed to higher levels of unemployment and lower wages payable for youth with disabilities (dhakal, connell & burgess 2018). for youth aged 15 years–24 years, unemployment sits at 60.7%, and for youth aged between 25 years and 34 years, it hovers at 39.8% (statistics south africa 2023). transitioning from high school for youth with disabilities is therefore challenging making the impact of transition programmes crucial to overcome the societal, environmental, intrinsic, tertiary education and employment barriers. globally, transition-specific policies and programmes aim for positive outcomes, where there is a meeting of scholar goals and post-school successes (mazzotti et al. 2021). career guidance is part of a life-long journey and a process for the specific deliverance of ‘support in relation to development, choice and placement in educational options and occupations or work roles’ (van esbroek 2019:36). career guidance forms an integral part of the socio-emotional development of youth with disabilities affecting their employment decisions and socio-economic inclusion in society (lipka, forkosh baruch & meer 2019). other significant sociological impacts include the effect on confirming certain roles in adulthood, reduced independence and the lack of firming personal identities (hirano et al. 2018). furthermore, career planning occurs mainly in high school (kelechi & ihuoma 2011) where teachers or counsellors help with identifying career paths (dislere & vronska 2020), aligning interests and abilities (milosheva et al. 2021), providing relevant information on careers (wong, yuen & chen 2021) and determining goals and possible plans to achieve these goals (ogenyi, ajibola & ojochogu 2020). the failures in transitioning from high school are typically ascribed to the uncoordinated nature of these services, poorly designed programmes, lack of opportunities and the disjointed career service provision throughout the life of people with disabilities (hall & parker 2010; kline & kurz 2014; santos, kupczynski & mundy 2019; shogren & wittenburg 2020). while it is widely accepted that research on transitioning frameworks, models and theories has evolved over time (carter et al. 2009; elder 1994; o’brien & o’brien 2000; ryan & deci 2000), a lack of focussed studies delivering evidence for improving practice remains (lindsay et al. 2019). one specific crisis area requiring deeper exploration is that of career guidance and the post-secondary schooling impact for people with disabilities (trainor et al. 2020; wehmeyer et al. 2019). furthermore, research on transitioning experiences into employment from the perspective of people with disabilities remains scant (shogren & wittenburg 2020), particularly views of people with disabilities from the global south (lourens 2020). south africa as a signatory to the full protocol of the united nations convention on the rights of persons with disabilities (united nations 2006) and its envious inclusionary policies and legislation still manages to see dire results and outcomes for youth with disabilities (unicef 2021). south africa is politically and economically a force to reckon with within sub-saharan africa but is still beset with inequalities in all spheres of society. its political history is tainted with the effects of apartheid having cemented structural and social divisions based on a contrived racial classification system. the remnants of these effects can be seen in the education system and more so in special education schooling where separate schools were in place for white children and children of colour (walton & rusznyak 2014). the apartheid policy on special schools ensured that ‘schools that accommodated white disabled learners were extremely well-resourced, whilst the few schools for black disabled learners were systematically under-resourced’ (department of education 2001b:9). few empirical studies have examined the views of people with disabilities regarding their transitioning experiences and the impact on career choices and trajectory once in employment (mclaughlin 2023; then & pohlmann-rother 2023). this qualitative multiple case study therefore sought to address a specific gap in our understanding of the influence of career guidance on post-schooling career trajectory for youth with disabilities in south africa. south africa’s legislative framework the constitution of south africa (republic of south africa 1996) provides an all-embracing account of the rights attributable to citizens with disabilities including unfettered access to education. furthermore, south africa’s white paper on an integrated national disability strategy requires that ‘legislation should comply with and give substance to constitutional requirements’ (the office of deputy president 1997:7). in support of this edict, the white paper 6 on special needs education exposes the national and systemic challenges experienced with building an inclusive education and training system in south africa (doe 2001). within a policy context, white paper 1 detailing education as a central activity in society (department of education 1995); white paper 2 detailing the organisation, governance and funding of schools (department of education 1996); and white paper 5 detailing on meeting the challenges of early childhood development in south africa (department of education 2001a) provide a specific educational focus that impacts on school going children with disabilities. with a sound legislative framework, it therefore remains a travesty that people with disabilities face persistent challenges in accessing quality education and skills development to support their transitioning through the education system (see figure 1). figure 1: overview of south africa’s inclusive education legislative development. in south africa, learners with disabilities can complete their schooling in three categories of schools, namely, public ordinary schools, ordinary full-service or inclusive schools and special schools with two variations (see figure 2). a ‘placement’ at a specific category of school is inherently linked to the perceived level of support required for inclusion in the specific environment (agran et al. 2020; elbaum 2002; hocutt 1996; shah 2007). public ordinary schools or mainstream schools are most welcoming of students who require the lowest levels of support without formal assessment and provide a varied curriculum. in contrast, children attending an ordinary full-service school must undergo a multidimensional assessment evaluating the environmental barriers experienced where teaching and learning are focussed on strengths and competencies (walton 2011). these ordinary full-service or inclusive schools are defined as ‘schools that will be equipped and supported to provide for the full range of learning needs among all our learners’ (department of education 2001b:22). full-service schools offer flexibility in teaching and learning together with educational support to learners and educators (ayaya, makoelle & van der merwe 2020) and embody the principle of diversity and fostering maximum participation. while inclusion through full-service schools is encouraged, south africa still experiences a shortage of suitably qualified teachers with special education training (kempen & steyn 2016; ladbrook 2009; mckenzie et al. 2023). significantly, specialised teacher support is linked to improved learning outcomes, positive attitudes to learning and better career development outcomes (wong et al. 2021), and within a south african policy framework, this central role of the teacher is acknowledged (department of education 2001b). figure 2: overview of school types in south africa. two forms of special schooling opportunities exist. firstly, the traditional ‘exclusionary’ special school is associated with a specific impairment (blind, deaf, physical disability, etc.) for children with high-intensive educational support needs on a permanent or part-time basis. these schools have recently been encouraged to share their expertise and provide support services to ordinary and full-service schools. secondly, certain neighbourhood schools have been designated as resource centres that are integrated into district-based support teams (department of education 2001b). these schools are ‘transformed to accommodate learners who have high intensity support needs and designed to assist learners through integrating various teaching methods based on the individual student’s needs’ (department of education 2001b:20). while the special schooling system aims to support children with disabilities questions remain about its suitability to facilitate access to tertiary education and job opportunities later in life (mitra 2018). conceptual framework students with disabilities tend to have lower levels of post-school success than their non-disabled peers (mazzotti et al. 2021). while there do not appear to be standardised approaches to transitioning, there is a common belief that youth with disabilities are better able to meet their goals when exposed to an appropriate mix of support, services, instruction and opportunities (carter et al. 2009). transition into adulthood represents a critical step imbued with confusion and difficulties when not planned appropriately (dell’armo & tassé 2019). bronfenbrenner’s ecological systems theory shows how the outcomes of transitions are influenced by the interactions of various key elements including educators, family, professionals, policies and societal expectations’ impact on the outcomes (lindsay et al. 2018). thus, transition planning at high school has a lifelong impact (nuske et al. 2019) and is a significant indicator and determinant of success for tertiary education and desired careers (brooke, revell & wehman 2003). transitioning is complex, and through the influence and interactions of multiple systems and their interactions that include the microsystem (family, school), mesosystem (connection between family and school), exosystem (policies and services), macrosystem (societal beliefs and values) and chronosystem (historical context), a holistic approach can be adopted to support students with disabilities during the transition process. beyond acknowledging the multiple systems influencing people with disabilities transitioning, personal agency, a concept central to albert badura’s social cognitive theory, plays a critical role too. bandura (1989, 1997) emphasised the influence of self-efficacy beliefs and the capacity to exercise control of personal actions and choices. moreover, shogren and wittenburg (2020) found that customised and narrowly focussed programmes in line with bandura’s principles reinforce the need for early intervention directed by the youth’s needs. through promoting autonomy and self-determination, it becomes evident that offering choice, motivation and self-determined outcomes can promote wellness and happiness (dunn & brody 2008). while studies on decision-making and expectations in the context of people with disabilities are widely examined, the tertiary education and employment outcomes for youth with disabilities still remain bleak (broberg 2011; o’brien & o’brien 2000; kirby, dell’armo & persch 2019; russell 2003). bandura’s theory acknowledges the impact of environmental influences, such as societal norms and expectations, on career outcomes. therefore, it is critical to address these environmental factors to enhance the transition experiences of youth with disabilities. considering the layered and textured experience of transitioning, successful outcomes call on students to be placed at the centre of all processes (nuske et al. 2019). through encouraging youth with disabilities to evaluate their own decisions as well as others, self-determination and autonomy are promoted – key elements emphasised by bandura – for ensuring the maximum participation in post-secondary education and employment (deniz 2023; gobec, rillotta & raghavendra 2022). integrating these concepts in the transitional processes can empower youth with disabilities to overcome challenges and experience more favourable career outcomes. guidance and career counsellors are critical in developing the necessary understanding for better career choices. oliver’s (1990, 2013) social model of disability recognises that disability results from more than an individuals’ impairment and is also shaped by attitudes, systems and environments. this framework promotes equal opportunities and support for people with disabilities in making informed decisions about their careers and in so doing laying emphasis on the critical role guidance and career counsellors play in schools. career prospects for disabled youth are largely influenced by the school they attend and the quality of the support and resources available (klang et al. 2020). in line with oliver’s views, the need to ensure environments that are accessible physically, free from discrimination and offer inclusive support systems is necessary for the successful transitioning into careers or further education (hirano et al. 2018; lindstrom, doren & miesch 2011; stuntzner 2014). an educational experience free of such barriers is important in ensuring individuals can participate fully in society and access diverse career options. in the south african education system, there continue to be blurred lines regarding disability. it is for this reason the policy on screening, identification, assessment and support (sias) was documented in 2014 but implemented only from 2016 (department of basic education 2014). from a social model perspective, this policy represents a move towards recognising the need to provide support to those students experiencing barriers to learning. practical implementation remains a challenge, and the persistent gap between policy intent and provided support is detrimental to progress. furthermore, from the social model perspective, the development of inclusive policies and the effective implementation to ensure equal access and support must be coordinated (van niekerk, maguvhe & magano 2022). teachers who teach special needs students need to have the pedagogical knowledge as well as expertise in teaching learners with special needs as this is vital for the learning experiences of such children (karisa, mckenzie & de villiers 2020). ‘this implies that high quality teacher education and development programmes are required for teachers in special schools to ensure optimum learning experiences for learners in special schools’ (gorman & drudy 2011). the conceptual framework considers the multifaceted nature of this critical phase in people with disabilities lives. the framework combines elements of ecological systems theory, social cognitive theory and the social model of disability and offers a holistic perspective considering the complex interplay of various factors shaping the transition experiences of youth with disabilities. the ecological systems theory, as proposed by bronfenbrenner, underscores the importance of examining the interactions between educators, family, professionals, policies and societal expectations in influencing outcomes during the transition process (lindsay et al. 2018). by recognising the influence of multiple systems and their interactions, we can adopt a more holistic approach for effective support. bandura’s (1997) social cognitive theory highlights the need for tailored interventions empowering youth with disabilities to make choices and foster self-determined outcomes that can significantly enhance their overall well-being and happiness. moreover, the social model of disability emphasises the role of attitudes, systems and environments in shaping disability. this perspective aligns with the idea that career prospects for disabled youth are heavily influenced by the quality of support and resources available in educational settings. drawing from the ecological systems theory, social cognitive theory and the social model of disability, therefore, offers a nuanced understanding of the transition experiences recognising the complexity of this process and the various factors at play, from interpersonal interactions to societal structures. in the context of south africa, where the implementation of inclusive policies remains a challenge, this framework can shed light on the gap between policy intent and practical support. it underscores the need for coordinated efforts to ensure equal access and support for students with disabilities. additionally, it highlights the importance of high-quality teacher education and development programmes to create optimal learning experiences for these students. through considering this holistic perspective, our study is aimed at empowering youth, improving their outcomes and creating a more inclusive society for all through addressing how people with disabilities experience career development practices. research methods and design the case study design was employed to permit the researchers to gain in-depth knowledge about a specific real-world problem; in this instance, how youth with disabilities experience career development practices. case study is viewed as a suitable research design when the proposed research focuses on a contemporary phenomenon, which the researcher has no control over; the research is mainly exploratory; and it addresses the ‘how’ and ‘why’ questions (darke, shanks & broadbent 1998; yin 1994). for this research, an exploratory multiple case study approach was deployed to explore the transition experiences of employed youth with disabilities and how career guidance impacted their career trajectory. a case study is an empirical enquiry that explores a modern phenomenon within its real-life context, especially when the boundaries between phenomenon and milieu are not apparent (yin 1994). the selection of cases focused on employed youth with disabilities who had attended special schools in south africa (etikan 2017). it is widely established that the selection of case studies need not be a static activity; however, the process needs to be justified, fully detailed and later stated to the case study audience in order to provide the context for determining the sample (morse 2020; yin 1994). the inclusion criteria for participants in this study (table 1) were: youth (18–36) with disabilities who can converse in english or afrikaans both male and female participants were employed for at least 1 year at the time of the study. table 1: case profiles. data were collected by way of eight semi-structured in-depth interviews to explore and understand the perceptions of disabled youth on career development practices to the point of saturation. where time was limited, a follow-up interview was conducted for further clarification. data were collected over 3 weeks and advanced to the primary analysis when the data were still fresh. each interview was 45 min to 1 h long. data analysis the researchers applied the six-step framework suggested by braun and clark (2006) in the thematic analysis of data. the approach accommodated the ability of all researchers to engage with the analysis in a pragmatic manner (aronson 1994). one researcher transcribed the raw files verbatim after each interview session ensuring that the first step of data familiarisation was achieved. the data corpus therefore consisted of all transcribed interviews (merriam 2009). the transcripts were shared with co-researchers once completed. the primary investigator initiated the second step of the process conducting the first level of coding and translating the raw data into meaningful groupings (evans & lewis 2018). the process involved a sequence of grouping similar data where key concepts were extracted from the participants’ responses. the third step was for the primary investigator to examine the transcribed interview responses in order to identify patterns of similarities and dissimilarities in the perceptions of the participants (skjott linneberg & korsgaard 2019) and then subsequently compare them to each other. in the fourth stage, the primary investigator explored the themes and added codes and furthermore assessed how they interconnected with each other (braun & clarke 2006; neal et al. 2015). during the fifth phase of theme modification, the primary investigator identified areas of interest in relation to the study at hand (braun & clarke 2006). the sixth and final phase is the presentation of findings. as a means of triangulation, the researchers met to confirm the codes, categories and themes presented as well as reviewed existing literature to confirm alignment. furthermore, the trustworthiness of the study was developed through providing participants opportunities to review our transcriptions and maintaining an audit trail of our decisions through thematic analysis. ethical considerations an application for full ethical approval was made to the university research ethics committee, and ethics consent was received on 04 october 2021. the ethics approval number is su-23443. the recruitment process commenced after this study was approved by the university research ethics committee under project number: usb-2021-23443. all procedures performed in this study were in accordance with the ethical standards of the institutional committee and with the 1964 helsinki declaration and its later amendments or comparable ethical standards. written informed consent was obtained from all individual participants involved in the study. confidentiality was maintained throughout the study, and anonymity was addressed through providing participants with pseudonyms. findings interviews conclude with a synthesis of findings representing participants’ accounts of the career guidance received and factors that impacted on their career trajectory and transitioning as youth with disabilities having attended special schools. the findings shared are arranged according to two overarching themes and six sub-themes (table 2). the main themes addressed in this article include firstly, tailored expectations, addressing the discouragement experienced by participants related to teacher expectations and personal agency and autonomy. the second theme, mis(guidance) curriculum, captures the influence of the advice provided by counsellors, the resistance engendered through negative experiences, the need to enhance career decision-making and the societal expectations on youth with disabilities. table 2: factors impacting on career choices for youth with disabilities. theme 1: tailored expectations teacher expectations are critical in the development of children with disabilities educational experiences. besides family and close friends, school teachers’ expectations were internalised by all participants; ‘but i think, for some of the people who aren’t used to the idea of inclusion, i think that was a bit, yeah, and it was obvious, but i got over it.’ (tania, female, 25, osteogenesis imperfecta) became a reference point of inclusion or othering; ‘and i understand people being skeptical … it is much harder [being disabled] … you know … [they believe] odds are low that you’ll make it and it’s a numbers game to get to university.’ (wouter, male, 32, visually impaired) and experienced as uplifting or undermining of their potential throughout their school journey. ‘but another aspect is that a lot of times disabled people are not encouraged to study careers like this. because it’s assumed by the educators that they will struggle, which they will, but that’s part of the learning process. and also, it’s assumed by the educators that a lot of material and, and so forth, are inaccessible, and therefore it’s going to be too much effort.’ (renier, male, 31, visually impaired) all our participants considered the way teachers received them, included them and encouraged them to have impacted on their choice of tertiary studies and career. justin’s experience arriving as a new scholar captures these tailored expectations. ‘i was a guinea pig for them because i was the first quadriplegic at the school … that school has everything … though i cannot fault them on being accommodating to my needs, the schoolteachers did not expect much from us and i felt they didn’t believe we could excel beyond grade 12.’ (justin, male, 33, quadriplegic) despite the specialisation and focus on disability at these schools, participants felt that teachers did not ‘see’ them first as scholars but rather focussed on their disabilities. for many participants (6), teachers often made subjective determinations about their ability, actively discouraged participation in certain school activities and projected their personal fears onto scholars. these factors resulted in experiences of reduced scholar autonomy. participants’ experiences in this way illustrated the attitudinal barriers encountered within special schools. participants considered teachers and guidance counsellors to be most influential in motivating their career interest. these teachers needed to consider more than just their perception of their ability to perform in a certain career and had to move beyond an approach of finding more ‘suitable activities’ to avoid undermining scholars’ experience of their disability. the role of teachers in shaping an interest in specific careers and the discouragement experienced became constant reminders for all participants when considering career choices later in their lives. untested assumptions of scholar abilities together with the discouragement to participate in various activities had further consequences on what schools would resource and provide as part of a more expansive curriculum and learning and teaching experience. furthermore, these tailored expectations were felt to be limiting with respect to developing an aspirational mindset for children with disabilities. theme 2: (mis)guidance curriculum participants (8) were reflective of the role guidance counsellors played in shaping their career trajectories. in class guidance sessions participants felt that counsellors coerced them into considering certain careers that were ‘suited’ to their ‘abilities’ and/or disability, were intentionally vague and ambiguous with career advice and relied on entrenched social norms rather than individualised assessments when providing advice. this (mis)guidance as described by participants (8) led to feelings of discouragement and self-doubt. the limitations imposed through these sessions in most cases impacted on the choices participants made with respect to their tertiary education options. tertiary education choices invariably impacted on the first professional working opportunities participants experienced: ‘the guidance counsellor persuaded me to lean towards easier school subjects. we were made to feel that we had to act as ‘normal’ as possible. because of the very conservative culture we were also not allowed to question anything. i wanted to do information technology, but it wasn’t part of the syllabus, and the school were not willing to hire a teacher to facilitate this subject.’ (lauren, female, 28, visually impaired) guidance counsellors were viewed as authoritative figures, and most participants (6) were not inclined to challenge their views and advice. while participants felt discouragement, some believed they needed to resist the pressures to accept without questioning, persevere and persuade despite possible retribution and expand their sources of career advice and guidance to promote their personal development. resistance was viewed as a necessary tool for self-promotion, and being perceived as rebellious was a necessary consequence to achieve the desired career aspirations. personal motivation, perseverance and exposure to other sources of career advice played a role in fortifying participants’ resistance: ‘i told her i want to do science and she says, why? they said it isn’t useful, who’s going to employ some blind person doing science … and i said, because i’m interested in it. and then she says, but why, it’s not useful? and then i’m like, i’m going to study something useful. it will be useful. but if i don’t have [science] i can’t study stuff in technical, in the science direction, and then she says but you can do political science … so then i just told her, listen, write there on your piece of paper, i didn’t want to listen to you. and one day, you can tell me that i told you so when it comes to that.’ (wouter, male, 32, visually impaired) while most participants (6) expressed the discouraging impacts of guidance counselling, there was an indication when guidance counselling could provide a positive experience and enhance career decision-making. where sessions were conducted and required communal inputs, positive experiences were possible. the value of dialogical sessions introduced a collective responsibility for improving the understanding of careers: ‘high school was a great time to start thinking about my career. the regular group guidance sessions arranged by our guidance counsellor was helpful for me. in particular the time spent with my peers where we collectively had an opportunity to discuss and explore our career aspirations, the experience was almost like a shared responsibility.’ (tania, female, 25, osteogenesis imperfecta) guidance counselling services in special schools provide the first exposure to potential career choices for people with disabilities. a structured approach to informing scholars of their potential to develop careers based on their personal interests and not disability in safe and unexposed environments was important to participants. these sessions need to be open and free of judgement for scholars to express their understanding or misunderstandings of prospective careers. the frequency of these sessions also played a role in creating a safe space for the exploration of scholar’s ideas and thoughts. where these environments did not provide this, resistance and perseverance were required. participants (8) raised concerns about how the discouragement of teachers and counsellors to do more than required perpetuated a negative perception of people with disabilities; promoted the observance and prioritisation of normative behaviours and outcomes, and reinforced an understanding that children with disabilities only required the achievement of the ‘lowest standard’ to be accepted in society. for participants, these societal perceptions were still experienced and expressed in special schools: ‘ending up in a wheelchair … they’re not encouraging you to complete school, they tell you to complete school, but don’t pass all your subjects … you just need five subjects to pass out of the six … that puts me off. there’s no sense of, you are gonna have to do this … you are going to better your own life, it’s just okay. so that is how, that’s society, i’m going to tell you the truth, that is how society sees people with disabilities.’ (justin, male, 33, quadriplegic) while teachers played a role in advising of different career choices, the broader school’s leadership and decision-making bodies also had an impact on the expectations and overall educational offering presented. as the demand for specific subjects declined in relation to the discouragement over time, the schools resourcing of the ‘difficult subjects’ also diminished. participants believed mainstream schools did not experience this. moreover, participants suggested that the societal expectations of children with disabilities could also be witnessed through the disparities between historically disadvantaged special schools and others. providing the appropriate subjects that laid a foundation for certain fields of study was more prevalent even in advantaged schools and had a societal impact as fewer people with disabilities would be able to enter ‘specialised fields’. ‘so that’s the problem we have in south africa, education for disabled people … it’s really not adequate at all, in an ideal world, this is something that should start from, ground phase. we must be honest, even schools, like x school [private and government funded school] they’ve already phased out physical sciences, which means that anyone who goes to x school is not able to study bsc at the university.’ participants (8) recognised the importance of subject choices in furthering their tertiary education and employment ambitions. while in most cases participants succumbed to the pressures, resistance also played a role in determining the educational outcomes for scholars. while the school teachers and counsellors advised against taking certain subjects, those who rebelled considered the struggle to be worth the effort: ‘even my friend and i at school, we were advised against taking mathematics and physical sciences, because of the assumption that it is difficult, and we would experience, and it was difficult, but it was worth it.’ (renier, male, 31, visually impaired) there was a tacit recognition by participants that not all special schools provided the same opportunities for scholars, especially children with disabilities from disadvantaged backgrounds who faced greater challenges. model c schools were known to rely on governing body funding as well as government funding allowing for the opportunity to present a broader curriculum than advised by the state. renier explained: ‘i would assume due to the people i’ve talked to you, about 90% of blind people are from very rural backgrounds, where they are just not exposed to, careers like this [in] the schools for the blind, and the education for the blind in south africa. unless you go to some place that, that, you know, that’s traditionally a model c school.’ (renier, male, 31, visually impaired) discussion school career guidance counselling plays a crucial role in the decision-making and career trajectories of youth with disabilities. the findings of this study are consistent with research that suggests administrators, teachers and school governing bodies are instrumental in determining the quality of education, environment and experiences of scholars with disabilities (esposito, tang & kulkarni 2019). a further affirmation of the need to consider an ecological perspective when planning transitions was provided. the participants demonstrate that this influence has longer-lasting consequences affecting their social and economic inclusion in society. the career choices made by participants are influenced by teacher and guidance counsellor expectations that at times reinforce a medicalised view of disability, that is, teachers were inclined to believe that a ‘problem’ exists within a person. this study reveals that teachers found it difficult to envision other positive outcomes for scholars as their unconscious biases prevailed, reinforcing the importance of addressing attitudes influencing transitioning in special schools (oliver 1990). a fallacy enforced disadvantage resulted in most cases akin to what rosenthal and jacobson (1968) described as the ‘self-fulfilling prophesy’. furthermore, we reveal how the prediction of another’s outcomes is arrived at through actions that unintentionally and indirectly influence the behaviours of others, which leads to entrenching disadvantage that youth with disabilities experience. teachers who believed that key subjects like mathematics and science were undoable discouraged student participation, impacting demand and leading school governing bodies to defund or eliminate such positions. in our study, participants explain they constantly reflect on what they were told they could not do, which has had an effect on their achievement outcomes (becker & luthar 2002). through this study, we show a darker side to counselling that presents itself based on the accounts of our participants having attended special schools. the (mis)guidance of scholars shows the destructive role guidance counselling can have, particularly for youth with disabilities that are already minoritised and care is lacking. the role of career guidance has previously been identified as either ‘preventative’ or ‘re-integrative’ (watts 2001). the preventative orientation typically occurs while scholars have access to education, and the re-integrative orientation occurs when outside of such structured educational opportunities. both are meant to lead to increased opportunities for inclusion in society, that is, career counselling is aimed at shielding individuals from social and economic exclusion in society. the study shares accounts of what we consider a discriminative and restrictive approach to counselling influenced by the unconscious biases towards people with disabilities. the active discouragement to avoid specialised careers based on untested assumptions is detrimental and reinforces stereotypical perceptions of what people with disabilities can achieve, especially where the social mobility of many youths with disabilities is intimately linked to their educational backgrounds. this discouragement in effect limits the ability to become self-determined and act with autonomy (bandura 1989, 1997). various scholars have argued for what we have found that career aspirations must be nurtured rather than suppressed to address the exclusion and discrimination experienced by people with disabilities and their acceptance as citizens in society (bam & ronnie 2020; barnes 2012; finkelstein 2007; lorenzo et al. 2019; 2004). while discouragement may result in achievement or outcome gaps, the study’s findings present another outcome that of resistance. the researchers have not explored the issues of power, control and micro-terrors with depth, but the findings of this study highlight how participants’ individual experiences are representative of a symbolic violence showered in paternalistic advice and mentorship as described by ratle et al. (2020), another indication of the omission of care. the debate regarding special schools versus mainstreaming continues, and while the merits may be disputed on a case-by-case basis, it is evident through our study that innovation in teaching can be a key differentiator for the experience of a quality education. considering the south african context, historically advantaged and disadvantaged schools and infrastructure must be considered when considering the career choices and trajectory of students. while legislative advances have been made, inclusion remains a pipe dream. special schools in south africa irrespective of the historical divides remain under resourced, and mainstreaming is almost an impossibility for most youth with disabilities representing a major challenge across all systems (bronfrenbrenner 1979). the acceptance of disability and the internalisation of the experience are not unique to this study (chen 2015; santuzzi et al. 2014), but what we have found is that the earlier this experience occurs for students, a self-reported increase in confidence was expressed in transitioning from special schools. in this study, the role of parents, guardians and teachers (hirano et al. 2018; miller et al. 2018) and access to information are critical in shaping career discussions and need to be aligned to ensure the best possible transition. where there is a dearth of information (gibson & martin 2019), scholars are disadvantaged. recommendations and implications the study underscores the urgent need for reshaping education by promoting the integration of people with disabilities into mainstream schools. this shift dismantles barriers and challenges the medicalised view of disability. governments and education departments must therefore prioritise comprehensive training programmes for teachers and guidance counsellors to raise awareness of unconscious biases and equip educators with practical strategies to foster diverse career aspirations. furthermore, the authors stress the importance of supporting special schools through improved resource allocation to enhance the quality of education and career guidance they offer. early intervention, including career exploration and counselling involving parents, guardians and teachers, is essential in bolstering students’ confidence and broadening their career horizons. lastly, ensuring access to comprehensive career information for students with disabilities is imperative, empowering informed decision-making. the authors provide a few implications of this study, firstly, the quality of career guidance profoundly impacts the long-term social and economic inclusion of youth with disabilities. inadequate guidance perpetuates disadvantages, while supportive counselling opens doors to enhanced opportunities. secondly, the authors highlight the prevalence of unconscious biases among educators and counsellors that limit students’ career choices. addressing these biases is crucial for equitable opportunities. additionally, special schools play a pivotal role and need adequate support where inclusive education and innovative teaching can also offer more positive experiences and broader career options. lastly, early intervention and support are vital for positive outcomes during transitions. acknowledgements the authors would like to acknowledge the administrative support provided by amienah van niekerk. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions a.b. conceptualised the article, wrote the original draft, conducted the analysis and presentation of findings and discussion, and provided supervision as the primary author. s.k. contributed to the review of literature, writing of the drafts and review of the article. z.c. gathered the data, curated the data and reviewed the drafts. funding information this research received no specific 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k.a., morningstar, m.e., ferrari, l. et al., 2019, ‘a crisis in career development: life designing and implications for transition’, career development and transition for exceptional individuals 42(3), 179–187. https://doi.org/10.1177/2165143417750092 wong, l.p.w., yuen, m. & chen, g., 2021, ‘career-related teacher support: a review of roles that teachers play in supporting students ’ career planning’, journal of psychologists and counsellors in schools 31, 130–141. https://doi.org/10.1017/jgc.2020.30 yin, r.k., 1994, ‘discovering the future of the case study method in evaluation research’, evaluation practice 15(3), 283–290. https://doi.org/10.1016/0886-1633(94)90023-x about the author(s) julius t. kamwesiga department of neurobiology care sciences and society, karolinska institute, sweden occupational therapy school, institute of allied health and management sciences mulago, uganda lena k. von koch department of neurobiology care sciences and society, karolinska institute, sweden department of neurology, karolinska university hospital, sweden gunilla m. eriksson department of neurobiology care sciences and society, karolinska institute, sweden department of neuroscience, rehabilitation medicine, uppsala university, sweden susanne g.e. guidetti department of neurobiology care sciences and society, karolinska institute, sweden citation kamwesiga, j.t., von koch, l.k., eriksson, g.m. & guidetti, s.g.e., 2019, ‘corrigendum: the impact of stroke on people living in central uganda: a descriptive study’, african journal of disability 8(0), a606. https://doi.org/10.4102/ajod.v8i0.606 note: doi of original article: https://doi.org/10.4102/ajod.v7i0.438 corrigendum corrigendum: the impact of stroke on people living in central uganda: a descriptive study julius t. kamwesiga, lena k. von koch, gunilla m. eriksson, susanne g.e. guidetti published: 10 oct. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in the version of this article published earlier, the surname of the second author, lena k. von koch, was inadvertently misspelt as ‘von kock’. the second author’s surname should have appeared as ‘von koch’ throughout the author list and ‘how to cite’ information section. this correction does not alter the study’s findings of significance or overall interpretation of the study results. the author apologises for any inconvenience caused. article information author: helen l. laas1, 2 affiliations: 1south african association for learning and educational differences, kwazulu-natal branch, south africa2inclusive education, embury institute for teacher education, durban, south africa correspondence to: helen laas postal address: 119 lillian ngoyi road (previously windermere road), morningside, durban 4001, south africa dates: received: 02 feb. 2012 accepted: 10 aug. 2012 published: 28 sept. 2012 how to cite this article: laas, h.l., 2012, ‘journey through the trials and triumphs of disability’, african journal of disability 1(1), art. #16, 9 pages. http://dx.doi.org/10.4102/ ajod.v1i1.16 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. journey through the trials and triumphs of disability in this original research... open access • abstract • introduction    • my story       • significance of the study • research methods and design • results • ethical considerations • trustworthiness • discussion    • chapter 1: start from the very beginning    • chapter 2: fragility    • chapter 3: one of us … the culture of people with disabilities in south africa, our apartheid legacy    • chapter 4: rolling on with life • conclusion    • drawing the curtain • acknowledgements    • competing interest • references abstract top ↑ one woman’s journey through the trials and triumphs of disability, disabled peoples international 8th world assembly 2011 durban, south africa, october 10–13, 2011. when embarking on my career as a teacher at a special school in south africa, i never thought that a motor vehicle accident would place me in the position where my learners with disabilities suddenly saw me as an ally. little did i realise the chasm that exists between able-bodied people and people with disabilities, or the remarkable role i would find myself in whilst actively addressing disability and inclusive education issues. my experiences with disability in south africa drew encouraging attention from delegates at the disabled people’s international 8th world assembly when i shared my story. the resounding positive response affirmed that my experiences are not unique to nationality, gender, race or age, and are typical of the time and country in which i live, where people with disabilities are considered to have little potential, and woman with disabilities are further marginalised. in the infancy of our democracy, we are still in the early days of attending to equity amongst all south africans. this story comprises both a narrative and a graphic presentation which run parallel, although not always telling an identical story; they complement one another and should be experienced simultaneously. ultimately, it relates the success that can be achieved by pro-active people with disabilities as members of the south african society within their own spheres of knowledge and skill to change attitudes and practices of people without disabilities in education and local communities. introduction top ↑ my story my story starts off with a glibly-brief summary of the injuries that i sustained that should suffice for those whose focus still lies within the medical model. everybody’s story begins within themselves. mine began within an average body and a gifted mind. today, i have a less than fully functioning body, nerve damage, loss of sensation, varying degrees of limitations in mobility and function, permanent pain, depression, post-traumatic stress disorder, and some loss of intellectual functioning although i am still classified as being on the gifted end of the scale. on this level, i have grieved and accepted my loss and redefined my identity. but if that is all there was to it, there would be nothing more to this story and there is much more to my story.it is only when we move out of the medical model and into the social realm that we really realise the repercussions of one moment. life as a woman with a disability is not easy, but then again, nobody said life was ever going to be easy. my experience is that the combination of misunderstanding of disability and gender bias creates a chasm in interaction with the ’normal‘ populace. as a lone individual, i have found that it is necessary to actively champion the breaking down of illusions that people carry before we truly can begin to make real changes. eliminating discrimination at every level forms a core part of not only the international disability movement, but also of my own personal purpose. tied in with this cause is advocating the act of ownership that our disabilities are only one part of ourselves and not our defining factor amongst youth with disabilities. every person traverses their own life. looking back, the major events and choices form crossroads that clearly delineate each segment of my journey from the last, forming chapters of my life thus far. this is my story. significance of the study this study outlines a teacher’s experiences in disability and inclusive education from viewpoints both before and after facing disability on a personal level. it exposes the complexities of the changing of identities that one can undergo in one’s life as a result of disability, as well as evaluating the effectiveness of inclusive education training on undergraduate education students and teachers in both urban and rural settings, and examining possible ways forward. this story comprises both a narrative and a graphic presentation which run parallel, although not always telling an identical story; they complement one another and should be experienced simultaneously. research methods and design top ↑ this qualitative study draws on narrative reflections by the author as main participant, and combines the views of ex-learners and students taught by the author to create a story and visual presentation of her experiences (henning 2004). the author’s experiences of disability and the effects thereof are viewed in both the medical and social models (landsberg 2004). within the social model, an ecosystemic model is utilised to view the experiences of the author, specifically focussing on the microsystems and chronosystems which consider the systems directly interacting with the author over a period of time set within the south african context (exosystem and macrosystem) (donald, lazarus & lolwana 2010, landsberg 2004). falling into the category of narratives hiles, čermák and chrz (2009) describe as ‘dominat[ing] human discourse, offering a major resource for providing accounts of events, as well as the social and cultural practices for the circulation of meanings’, this study constructs the author’s experiences and views in south africa from the period preceding a motor vehicle accident in 2007, to 2011, forming four distinct chapters, documented as both a narrative and a visual presentation. in the process of reflecting upon effects of decisions made by the author, further research was carried out to determine the validity of the author’s impressions. two smaller studies (hereafter referred to as study a and study b), utilising purposive sampling, were thus included within the main reflection to ascertain the effect that the author’s disability has had on those within the microsystem interacting with her, specifically within the sphere of education. studies a and b employed both closed and open-ended questions which combined to give a rich view of the participant’s impressions. study a consisted of learners with a variety of disabilities who completed grade 12 in 2010. participants had been taught choir in 2006–2007 before the accident and computer applications technology in 2009 and 2010 by the author. they were therefore able to give a comparative assessment of her as a teacher both pre-accident and post-accident, as well as draw a comparison with able-bodied teachers. study b consisted of students attending a private tertiary institution which specialises in teacher education, who were lectured by the author on inclusive education and were asked to evaluate the impact the author’s disability had on their views of people with disabilities as well as inclusive teaching practices. results top ↑ the narrative and graphic reflections correspond to four main themes. chapter 1 (slides 2–7) documents the period before the accident in 2007; chapter 2 (slides 8–20) includes the hospital and rehabilitation period immediately after the accident, as well as learning to cope and find support on a personal and physical level; chapter 3 (slides 21–34) commences at the start of 2008 when the author returned to work as a teacher in a special school; and finally, in chapter 4 (slides 35–54), the author moves out of the safety of the community of people with disabilities to pursue the training of teachers as inclusive educators. it concludes with a review of the author’s perspective on life and thoughts on the future.study a ratified the author’s impression that learners were able to communicate with her on a more personal level, thus improving her effectiveness as a teacher of learners with disabilities, not through different teaching methodology but ‘rather that they saw a connection and felt more comfortable to talk with me’ (slides 27–34). of the seven participants, five responded that there was an improvement in the author’s teaching, with two indicating that her teaching remained the same. it was noted that the two participants who did not feel that there was an improvement in teaching ability, still commented that the author exhibited sensitivity to participant’s needs. all of those indicating an improvement cited understanding and disability support as areas where the author was more sensitive and that the author was able to communicate on many levels with the learners as a result of experiencing disability. in study b, answers to question 1 (addendum a) revealed that 95 of the 115 students who completed the questionnaire felt that the author’s disability had a positive effect on lecturing inclusive education (slide 44), 19 felt that it had no effect and 1 participant was unsure. in response to question 2 (addendum a), 68 participants indicated that interaction with the author nurtured a positive view of people with disabilities, 46 indicated no effect, and again 1 was unsure (slide 45). when asked to evaluate whether the author having a disability and lecturing participants in inclusive education affected their teaching practice in any way (question 3, addendum a), 60 responded that there had been a positive effect, 52 felt there had been no change and 3 were unsure (slide 46). ethical considerations top ↑ as the main participant in this study, the author draws on her experiences and analysis thereof, and chooses the elements of the story to be told (hiles, čermák & chrz 2009); therefore, all views expressed are the author’s own, except where stated otherwise. in order to complete study a, ex-learners were approached via www.facebook.com. only those 2010 grade 12 learners, who had initiated friendship with the author through this medium after she was no longer their teacher, were included. all participants were over the age of 18. again, the purpose of the study was explained and participants were invited to participate in study a on a voluntary basis. full time tertiary student questionnaires were completed on a voluntary, anonymous basis. prior to their completion of the questionnaires, the purpose of study b was discussed and it was stressed that choice of participation in the study, or not, would not affect a student’s marks. trustworthiness top ↑ the author’s bias implicit in the nature of narratives is acknowledged. within the constructivist framework, each person perceives and constructs reality from a different viewpoint and thus this study shows only the author’s interpretation of reality within the south african context (henning 2004). study a and study b were carried out, therefore, to assess the reliability of the author’s impressions of the impact of her disability on others in educational contexts. discussion top ↑ chapter 1: start from the very beginning here follows a little background to set the scene.we all have talents, and mine seems to be in the area of communication. right from the start, children with disabilities have always gravitated towards me. in my first year of teaching in 1998, i was blessed by having two children with special needs in my mainstream classroom, one with a cognitive impairment and the other with autism. i had never heard the words ’inclusive education’ at that stage; however, i believe that if a child is in your class, you have the responsibility to teach him or her. after working as a private tutor with children on the autistic spectrum, i decided to pursue my studies in teaching to complete my degree in education. with my new degree, i went to work at the open air school for learners with physical disabilities and continued my postgraduate studies part-time. during evening lectures, which often ended in debate, i was introduced to the education white paper 6, and i realised that teaching in a special school contradicted my belief in inclusive education, but i needed the experience, and aspire to the philosophy of trying to make a difference in whatever situation i may be. as an able-bodied person within the special school context, the misperception of people that i had enormous amounts of patience to work with special needs children frustrated me. rather than patience, i maintain firm boundaries and high expectations. in addition, i learned that ’children are children‘, no matter how they look from the outside. fiercely independent, passionate and driven, i usually achieved what i set out to do. with a passion for social justice, i generally enjoyed fighting the good fight, and challenging the social norms within both school and university spheres. at least that was how i saw myself. chapter 2: fragility in 2007, i was involved in a car accident.it was at that point that my world was turned upside down. in a single moment i became fragile; i became completely dependent on others, unsure of myself, needing a fixed routine to survive the day, and too afraid to go anywhere on my own. my 3-month stay in hospital was excruciating. separated from my family, unable to move and living on pain medication and antidepressants, i hit the lowest point of my life. i am quite sure that i am not the only one who has been in the condition where, if i could have actually moved myself out of the hospital bed, i would have thrown myself out of the window. and then, one night when breathing did not happen naturally, i realised that i wanted to live and forced myself to breathe ... the wonders of bilateral pulmonary emboli. i did most of my grieving in hospital and i came to terms with the fact that i would no longer be able to do all the things that i had previously been able to do; however, this has not always been possible for the members of my family. my now exhusband and my father both believed that i had given up hope, but in my eyes i had accepted the facts, which was important for me in order to be able to move forward. through the faith that i had in the children that i worked with, i learned to do some of the most difficult things i have ever had to do. i learned to self-catheterise, forced myself to climb into my wheelchair when my head spun and stood on burning feet, even if only for a moment. working in a school for children with disabilities, the disability i was now confronted with was neither foreign nor scary. that said, i daily make a conscious decision that i will live my life and not allow others to prevent me from achieving my dreams. it was still difficult for me during that time to go anywhere in public where children stared and adults looked away from me. i am deeply appreciative of the support systems i have. without them, i would have had either no reason to live or perhaps no ability to live. at the innermost core exists my family, followed by my helpers and friends (commonly known as my ’friendamily‘); together, we are learning to multiply by three. whilst my conscious mind understands that i cannot do everything that i did before, my unconscious does not. i have come to realise that it takes me now three times longer to do things than it did before. finally, i have the professionals who have offered great support. these are the people in my life who catch me when the wheels fall off, and do not tell me what i cannot do, but just help me to succeed. unfortunately, not all aspects of my life were supportive or positive. my disability changed my relationships; for instance, my exhusband could not cope and used to throw my wheelchair around, and forced me to walk with crutches the entire length of a shopping centre so that i was unable to walk at all for days afterwards. just short of one year after the accident, i fell pregnant with my son darrion. the frustrations that i experienced during this pregnancy were something i had no idea existed. i had to stop all of my medication, and my body reacted badly and eventually i lost 4 kg during my first 6 weeks of pregnancy. i was in permanent pain, which increased as the baby grew, and i could not take any pain medication. i spent my entire pregnancy in my wheelchair and developed asthma and the early stages of diabetes. darrion was delivered 5 weeks early through an emergency caesarean, and weighed 3.6 kg. after a week, we went home. two days later, my husband left. circumstances became progressively more difficult because nobody could tell me ways of coping with a new and growing baby from a wheelchair. for once, i found the internet to be completely useless. and, once again, i thank the lord for my family who stepped in and devoted time and energy to help me to work things out. my expectations of myself as a mother are frequently still more than i am able to achieve. even though i understand that i have limits, i have to rely on my family and friends to help me to carry out normal family activities. but i am determined that my children will not miss out because i am a single parent with a disability … ever the over-achiever. shopping is perhaps one of the most difficult tasks for me. most of the malls in durban are not as wheelchair-friendly as one would hope, although there has been a definite improvement in the allocation of parking bays. we sometimes spend 20 minutes waiting for a lift because every time it passes it is full, or in some places there is no lift and the wheelchair ramp is in the parking-lot which is really unpleasant on a rainy day. in busy shops, i have often resorted to humour when i could not move through an aisle and i have to ask people to move their trolleys. i tend to make jokes about the size of my butt; this generally elicits a look of shock at first, and thereafter a smile. people in south africa frequently still presume that if one is in a wheelchair one has a cognitive impairment. one of my biggest frustrations, to this day, is the assumptions that people, who do not need wheelchairs, make about wheelchairs. they presuppose that wheelchair users are unhappy to be forced to use a wheelchair; however, for the person in a wheelchair that vehicle is often seen as a means to freedom. it was only this year that i finally acquired a power wheelchair. despite criticism, i love the difference it is making to my life. i become tired of defending myself, my actions and my decisions. it is wearying to deal with the ’ag, shame‘-mentality that still pervades the general south african population. i am frequently tempted to come back with a snappy retort, but it probably would not help! by attempting to break down barriers this way, well-meaning people would rather become defensive and it would more likely increase negative perceptions, rather than foster friendship, respect and understanding. hours of therapy have helped me to understand that interacting with me sometimes brings up other people’s feelings of discomfort, and forces them to deal with the uncertainties of life. chapter 3: one of us … the culture of people with disabilities in south africa, our apartheid legacy ’welcome back, miss, you’re one of us now‘, was the joyful statement that greeted me on my return to the school where i taught, and that was how it felt. i found that the only place where i was accepted for exactly who i am and appreciated for what i could do, was the special school for children with physical disabilities where i worked. the learners form an isolated community of people with disabilities that has little interaction with the local community in which it exists, reminiscent of pre–1994 segregation. in retrospect, i was not really ready to return to work but i feared that i would turn into a recluse if i remained completely cut-off from society any longer. leaving the house is a conscious decision that i still make on a daily basis.no longer able to work with the younger children, where the physical demands were too strenuous, i was moved into teaching mathematics at senior and high school level, and later computer applications technology up to grade 12. i started to play the role of mentor to many of the teenagers, who turned to me with personal problems. they now felt that, with my experiences, i could understand what they were going through. this was most frequently noticeable amongst the girls who often remain silent in the patriarchal isizulu communities which still exist in rural kwazulu natal. during this time, i was also lucky enough to attend the saaled mini-conference in durban, where i discovered the work of toni noble and helen mcgrath (2003) in the development of resilience. i came to see this as one of the greatest areas of need amongst children with disabilities. when considering the development of children born with disabilities in terms of erikson’s psychosocial developmental stage of autonomy versus shame and doubt (de witt 2009), it seems to me that many of the learners that i taught had not developed the belief in their ability to perform tasks independently, which results in giving up at the first sign of possible failure. i had witnessed this in pre-school to grade 12 learners. it could be a consequence of overcompensation by parents and caregivers in this developmental stage, where they did for their children what those children could have accomplished for themselves. in so doing, they did not give their children the opportunity to develop the confidence to keep on trying until they experience success. as a result, i staged a school-wide campaign based on the bounce-back programme to encourage learners not to accept defeat so easily and to accept that sometimes things will not go well, but that does not mean it is a catastrophe. (mcgrath & noble 2003; dr seuss 1990). i also started a motivational wall where i placed quotes and inspirational sayings with a distinctly feminist flavour on a weekly basis. this especially appealed to the girls that i taught, although many times, i snuck up on the boys having a quick ‘squizz’ (look). finally, i started a movie club, where the goal was not to watch the latest releases, but to watch movies with social comment so that the learners could see themselves within the larger societal and world context. these friday night movie evenings were restricted to those learners who stayed at the hostel over weekends, and included popcorn and a general discussion afterwards. this gave them an opportunity to express their views and to enter into discussion on how society had, and could still, change. my focus here was to empower learners to accept themselves and to take ownership of the disability and responsibility for their learning. i modelled pro-active mantras such as ‘disability is just a part of me, not my defining factor’, and taught learners to be assertive in expressing their particular needs and preferences with regard to accommodations needed in the classroom. i was privileged to have had the opportunity to work with teenagers with disabilities in helping to identify limits, push the boundaries, and find alternate routes around obstacles. i introduced presentation software for delivering orals for learners who experience difficulties with verbal communication. i firmly embrace the open air school motto ‘i can and i will’ (bishop cited in morris 2011). in order to ascertain whether my disability had any effect on my ability to teach learners with disabilities, i conducted a mini-study through facebook. my exlearners responded in mixed ways. some felt that, because i was (and am) a good teacher, my disability did not improve my ability to teach. additionally, most of the learners felt that i had a better understanding of the difficulties they experienced and that they could relate to me on a personal level and receive better classroom support. (possibly because of my disability, they may have felt more comfortable speaking to me.) as part of my learning process, i realised that i had greater limitations in terms of energy reserves than i had initially thought. my home life was suffering. passionate as i am about what i was doing, in the back of my mind, i still felt i could only help a limited number of children experiencing barriers to learning within the confines of the special school. i realised that i would need to leave this safe-haven for the bigger world where i could reach teachers and, through them, help exponentially more children. ironically, the very identity which the learners bestowed upon me was the exact reason that i had to move on: being included by the learners in their community of people with disabilities, from which i had been excluded as an able-bodied teacher, motivated me to move out into a position where i could actively promote inclusive education, in the hope of helping to prevent other children to leave their home community to join a community of people with disabilities. the next stage in my journey took greater will-power and stubborn determination than any thus far. i left the safety of my job and comfort zone to follow the same dream that i had set out for years before … but, as expected, took three times longer than anticipated. i had misgivings about this move, and frequently fear threatened to overwhelm me. i focused nevertheless on the thought that, if i could influence 60 children by myself in a special school, just imagine how many i could reach if i could reach teachers. chapter 4: rolling on with life so it was that in july 2010, i moved to the embury institute for teacher education, a private university that specialises in teacher training. i had no idea of the physical strain it would exert on my body when i left a wheelchair-friendly environment to tackle stairs every day. even now, i still have to make a conscious decision to leave my house every day. unfortunately, my ability to reach others and make changes comes at a price, and i am not willing to wait for the changes to be made to welcome me in; by then i will have missed the boat.here, i have been supported in further developing a 2-year course on inclusive education, which forms part of the requirements for the bachelor degree in foundation phase education. the modules are completed in the second and third years of study and focus on barriers to learning, including disabilities, from a practical perspective placed in a south african as well as in a global context from a human rights based perspective. i lecture to two distinct groups of students: • full-time, undergraduate students. generally these students come from urban areas and are, for the most part, english-speaking. • approximately 170 grade r teachers from rural communities who are employed by the department of basic education. these students attend lectures during school holidays and for 1 week per term, and are, for the most part, isizulu-speaking. these students form the sample group for the later mini-research project carried out by myself to determine whether my disability influences my effectiveness in the lecture room. in my experience there is a lack of exposure to people with disabilities playing assertive roles in our everyday communities. it is most likely because of historical segregation and discrimination, that when people are exposed to disability, they react with heightened sensitivity, discomfort and sympathy. instead of offering assistance in a respectful way, they are either overbearing or too uncomfortable to act in a logical manner. frequently, people will intentionally look away or over the head of someone with a disability, or respond with an ’ag, shame‘. this ’ag, shame‘-mentality pervades south african society and has to be one of my most frustrating experiences on both a personal and a professional level. i am most appreciative to those people who respond in a level-headed, logical manner when faced with someone with a disability. it has been my goal to desensitise students to disability, by drawing attention to and from my disability, yet raise awareness of social justice by teaching them how to teach in a respectful, professional, and empathetic manner. at an academic level, my objective here was to help teachers see that inclusion in south africa is not only doable, but good for learners, and best practice for teachers. this will ultimately direct classroom practices towards both inclusivity and quality. the modules that i have curriculated draw on four main sources: • firstly, the south african department of basic education establishes the policy, perspective and protocol (south african department of basic education 1995, 2001, 2008, 2009). • unesco bangkok (2009) provides an international view on ‘teaching children with disabilities in inclusive settings’, providing clear and accessible information for second language english-speakers. • bornman and rose (2010) bring home the south african perspective on the practicalities of including learners experiencing barriers to learning. • fourthly, my personal classroom and life experiences colour our discussions with real problems and solutions and my students are free to explore my failures and successes to realise that, although not everything we do will be successful, there are many more things to try. my aim within these readings and lectures is to empower teachers to draw on practical creativity to source, research and create solutions to barriers to learning within their classrooms, school, district and community. as a means of encouraging interaction with the texts and encouraging critical thinking and discourse, students are required to write reflections on the required readings and to participate in discussions. as a result, many of the students have shared their experiences, bringing the reality of the classroom to the academic environment of the lecture theatre. within the comfort of the lecture room, we directly tackle some of the myths regarding disabilities prevalent in south african society, such as albinism, hiv and disability, through discussions where we explore housewives-tales and other myths. students are empowered with knowledge and facts that they can disseminate to their schools and communities. the final role that i have found myself playing is that of counsellor. my knowledge of inclusive strategies, as well as my general approachability, encourages students to seek assistance and support and there is often a queue outside my office. that is what inclusive education is really about: co-operatively supporting each other. in order to gauge the impact of my disability on my effectiveness in lecturing on inclusive education, i conducted a small study on my students through a voluntary, anonymous semi-open-ended questionnaire (addendum a). the results of the study were highly gratifying: • of the 115 students who responded, 83% felt that my disability impacted positively on the effectiveness of my lecturing on inclusive education. one of the themes evident in students’ comments was that my disability gave them better insight into the daily barriers experienced by learners. this reiterates the belief that people with disabilities need to be in the forefront of disability and inclusive education. • 59% of students felt that my disability and lecturing on inclusive education was responsible for changing their attitude towards persons with disabilities. much to my relief, many of those who indicated that my having a disability had nothing to do with changing their attitude commented that they already had a positive attitude towards working with children with disabilities. this led me to conclude that inclusion training has a positive effect on the attitudes of teachers and future teachers in kwazulu natal. • finally, in the area of change in teaching practices, 52% said that there had been a change in their methodology of teaching. if one out of every two teachers changes his or her teaching practices after exposure to people with disabilities and inclusive education training, the pace at which classrooms become inclusive would be rapidly and positively affected by inclusive education training. this leaves opportunity for further study into the effectiveness of change on teaching practices where on-going support is provided for educators. on a personal level, i have found wearing this hat to be most rewarding and fulfilling. private sector work inevitably includes its own stress factors, with deadlines to meet and not enough seconds in each minute to complete all i wish to do; however, it also offers the opportunity to be on the cutting edge and the freedom to spread my wings. the year 2011 has been one of growth: • i have flown to other parts of our country twice already to attend conferences on inclusive education and it is wonderful to see that the seed is finally starting to sprout. • as part of a group of passionate saaled members, we recently formed a south african association for learning and educational difference (saaled) kzn branch, where i have taken up the post of deputy chair. our aims are to share information regarding best practice in terms of inclusive education, as well as to embark on outreaching into rural schools to provide support to teachers who are unable to attend training workshops in major city centres. i look forward to the fruit it will bear as inclusive practice becomes more rooted in classrooms across our beloved country. conclusion top ↑ drawing the curtain whilst writing this conclusion, i happened across a ted talk by stuart brown (2009) on the role of playing, and made a wonderfully revealing discovery about myself: i love to play.one of the directors asked me last year, in all seriousness, what i was doing … to which i, in all seriousness, responded, ‘playing nicely’. of course, i then had to support the statement with ‘if my work becomes a job, i won’t enjoy it anymore’. by viewing work as a form of play, it allows me to be more creative in what i do, rather than needing the rigid structure i needed in the first few years after my accident. i have always loved toys; that was probably why i became a pre-school teacher to start with! i adore anything with a remote control. i love building with lego and changing transformers, but now my toys have changed and i am starting to enjoy my life more. i can take a walk to the shop (power chair); i can talk to my computer (using dragon software); i can develop new and interesting courses. the students love them because they are fun, problem-focused and interesting. i can still read to my kids. and like thomas the tank engine, i serve a purpose. perhaps this is one of the reasons that i have been able to adapt, because i have not lost my sense of fun. i love to solve problems: word problems, math problems, learning problems and teaching problems. my work, to me, is serious fun! it is one of the reasons i am effective at what i do. it is probably the reason i manage to change people’s views, because to me ‘better’ means fun, learning should be fun and fun means ‘inclusion’, and teaching is all about having serious fun in the classroom. overcoming the daily obstacles is an ongoing process for all persons with disabilities, and many of these obstacles lie in the minds and perceptions of those around us. sharing this journey is a blessing. i still live in pain every day of my life, and some days i rail against my dependence on others to live through the day; i grieve in my fragile humanity. on the other hand, each day i get out of bed, knowing that i do not have a choice … what i do makes a difference in someone’s life, and that i have to create a better future for others. perhaps, because of something that i have said or affected, one child less will leave their family and their community, and one more child will grow up as part of a group of friends with hopes and dreams just like everyone else. it should not be an anomaly when a person with a disability is successful. ideally, it should be the standard expectation for all people to have the potential to achieve. it is generally accepted that teacher expectation of learner potential and the teacher’s belief in their ability to teach the learner directly impacts on learner achievement; therefore the focus needs to be placed on pro-actively equipping teachers to implement inclusive education so that teachers can believe that they have the ability to teach learners with disabilities and that those learners will achieve something. in my opinion, equity in south africa still has a long way to go but in the infancy of our democracy, baby steps have already been made: • we have a constitution that acknowledges the rights of all policy, in terms of white papers, the sias documents and guidelines for inclusive or full service schools, have been put in place (dbe, 1995, 2001, 2008, 2009). • teacher training and tertiary institutions are fostering understanding. • associations such as saaled, are supporting teachers to adopt best practice, that is, practices which have been proven to be effective, in their classrooms. as a pro-active participant in developing an inclusive education system, it is my view that this train has left the station, and if the department of education continues to forge ahead, there is a good chance that in the very near future, our schools will be inclusive. it is, however, up to individuals to ensure that teachers are on that train, not just watching it disappear into the distance. as an individual with a disability, i feel that my choices to move out of my safety zone towards attaining inclusive education are worth the struggle, and i intend to trudge on. whilst much of my essence has been swept away, a few traits have remained: my dry, quirky sense of humour, my stubborn determination, and my demand for a better future. i do not want to rid myself of my disability; i want to change the world around me to suit me, because i am not the only one like me. acknowledgements top ↑ the author wishes to thank all those who offered their support throughout the writing of this paper: family, friends, participants and colleagues from open air school and the embury institute for teacher education who read and reread, and contributed in their many ways. appreciation goes to the embury institute for teacher education for sponsoring my presentation at the dpi 11th world assembly in durban, south africa, in october 2011. competing interest the author declares that she has no financial or personal relationship(s) which may have inappropriately influenced her in writing this paper. references top ↑ bornman, j. & rose, j., 2010, believe that all can achieve, van schaik, pretoria.brown, s., 2009, ‘why play is vital — no matter your age’, ted talks, viewed 02 october 2011, from http://www.youtube.com/watch?v=hhwxlchcthc de witt, m.w., 2009, the young child in context, van schaik, pretoria. donald, d., lazarus, s. and lolwana, p., 2010, educational psychology in social context, 4th edn., oxford university press, cape town. henning, e., van rensburg, w., and smit, b., 2004, finding your way in qualitative research, van schaik, pretoria. hiles, d., čermák, i. and chrz, v., 2009, narrative oriented inquiry: a dynamic framework for good practice, in: robinson, d., fisher, p., yeadon-lee, t., robinson, s.j., woodcock, p. (eds.), narrative, memory, and identities. huddersfield, university of huddersfield landsberg, e. (ed.), 2005, addressing barriers to learning: a south african perspective, van schaik, pretoria. mcgrath, h. & noble, t., 2003, bounce back! a wellbeing & resilience program, 2nd edn., pearson, camberwell. morris, m., 2011, i can and i will, open air school, durban. south african department of basic education, 1995, white paper 1: white paper on education and training, department of basic education, pretoria. south african department of basic education, 2001, white paper 6: special needs education, department of basic education, pretoria. south african department of basic education, 2008, support needs assessment: learner pack (sias), department of education, pretoria. south african department of basic education, 2009, guidelines for full service / inclusive schools, department of basic education, pretoria. dr seuss, 1990, oh! the places you’ll go!, random house, new york. unesco bangkok, 2009, teaching children with disabilities in inclusive settings, bangkok, unesco asia and pacific regional bureau for education. article information authors: anthony k. danso1 frances e. owusu-ansah2 divine alorwu1 affiliations: 1department of building technology, kwame nkrumah university of science and technology, ghana2department of behavioural sciences, kwame nkrumah university of science and technology, ghana correspondence to: anthony danso postal address: department of building technology, kwame nkrumah university of science and technology, ghana dates: received: 25 july 2011 accepted: 15 mar. 2012 published: 16 may 2012 how to cite this article: danso, a.k., owusu-ansah, f.e. & alorwu, d., 2012, ‘designed to deter: barriers to facilities at secondary schools in ghana’, african journal of disability 1(1), art. #2, 9 pages. http://dx.doi.org/10.4102/ ajod.v1i1.2 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. designed to deter: barriers to facilities at secondary schools in ghana in this original research... open access • abstract • introduction    • background    • literature review       • discrimination against people with disabilities       • regulatory frameworks and international building instruments       • aim and objectives of study • research method and design    • materials    • setting and design    • sample and data collection method    • analysis • results    • car parks and garages    • access routes to and around buildings       • vertical circulation: staircases, ramps and lifts       • horizontal circulation: entrances, corridors, verandas and floor surfaces       • signage and information       • audible communication systems       • general lighting       • public telephones       • sanitary accommodation • summary of findings from questionnaires and interviews • ethical considerations    • recruitment procedures and data protection    • potential benefits and hazards • trustworthiness    • reliability    • validity • discussion • recommendations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: there are varied and complex problems associated with the admission of students with disabilities into secondary (senior high) schools all over the world. this situation is further complicated by difficulties encountered in the built environment of these institutions and, in this, ghana is no exception.objectives: this exploratory study investigated the level of accessibility of the built environment in secondary schools in eight out of the ten regions of ghana, in order to determine whether they conform to guidelines provided in international building standards and also assess the extent to which they have been designed and constructed to meet the provisions of the persons with disability act 2006, which allows for equal access to public buildings in ghana. method: in total, 705 building elements in 264 facilities were surveyed using international standards, building codes, regulations and guidelines. these facilities included car parks, classrooms, dormitories, assembly halls, telephone booths and administration blocks. results: our findings revealed that most of the building elements were barring and not disability-friendly. just to name a few: there were obstructions on access routes to and around buildings, absence of designated car parks, unfriendly vertical and horizontal means of circulation in buildings and lack of accessible sanitary accommodations. in addition, the general lighting and signage were poor. as a result, very few students with disabilities are admitted and retained in these schools. conclusion: mainstreaming of people with disabilities into the ghanaian educational system remains impossible unless urgent action is taken to alter the facilities at secondary schools. based on this research outcome, recommendations have been made to the ghanaian government and the ghana education service, as well as non-governmental organisations and relevant professional bodies for the amelioration of the present situation in our secondary schools. introduction top ↑ background ghana is a middle-income country with a per capita income of $1600 in 2010 and was the first black african nation to gain independence from british rule in 1957. located on the west coast of africa and with tropical climate, it is bounded by three french-speaking countries namely, cote d’ivoire, burkina faso and togo to the west, north and east, respectively, and by the gulf of guinea to the south. in 1996, the ghanaian government launched an ambitious pre-tertiary education programme, called the free, compulsory universal basic education (fcube) initiative, which sought to make basic (primary and junior secondary) education in ghana compulsory and tuition-free. aside from this, expenditure on education by the government has grown steadily from 1.5% of gdp in the early 1980s to about 3.5% in recent years. despite these laudable initiatives, quality education remains inaccessible to a number of school children, most notably persons with disability. after many years of military rule, the country returned to constitutional rule and promulgated a new constitution in 1992. article 29(4) of the 1992 constitution of ghana (ministry of justice 2005) avers that persons with disabilities shall be protected against all forms of discrimination that are exploitative, abusive or degrading in nature. however, the ghana federation of the disabled (2008) reports that persons with disability continue to face discrimination in all aspects of their social and professional lives. this has resulted in ghanaians with disabilities being amongst the country’s most marginalised and poorest inhabitants. to reverse or ameliorate the situation, organisations providing aid or services to people with disabilities joined hands under the auspices of both the ghana federation of the disabled and the government of ghana to facilitate the passage of the persons with disability act 2006 (pda) (act no. 715 of 2006) (republic of ghana 2006). the pda was aimed at enabling persons with disability to enjoy rights enshrined in the constitution, with the view to improving their living standards and mainstreaming their activities. these rights included, amongst others, accessibility to all public places, education, health care, transportation, recreation, equal employment opportunities and the creation of special bureaus at employment centres specifically for persons with disability. this study covers the education of persons with disability in secondary schools in eight out of the ten regions of ghana. findings are expected to educate, challenge and sensitise the general public to the needs of persons with disability in educational facilities and assist in the removal of those barriers that exclude them from the mainstream educational system of ghana. literature review discrimination against people with disabilities there is ample evidence to suggest that people with disabilities face discrimination in most spheres of their daily lives (gleeson 2001; imrie & hall 2001). the discrimination that the 1992 constitution (ministry of justice 2005) and the pda of 2006 (republic of ghana 2006) sought to eradicate comes in various forms. the social perception that disability equals inability and, thus, people with disabilities are incapable of making a meaningful contribution to national development is one of the many forms of discrimination (gfd 2008). another is the stigmatisation and perception that they are dependent and not part of the ‘normal’ society because of their disability (oliver 1990). the discrimination against people with disabilities extends to the built environment, where it is reported that about 90% of all individuals may become architecturally inhibited in some way at some point in life because of the inappropriateness of the design and construction of building elements such as narrow doorways, stairs and complex door furniture (wylde, baron-robbins & clarks 1994). designers of the built environment often seek to make it more accessible to all through the concept of universal design, which involves ‘designing buildings that are suitable for all users, and the removal of inadequate or inappropriate design solutions to disable users’ (imrie & hall 2001:335). although much of the work in this area was concerned initially and primarily with the needs of people with disabilities, there is now a move towards discussing universal design in terms of all end users. many people recognise the need to include the end user in the building design process and so shift the designer’s focus from one of pure aesthetics to functionality. it is also a fact that people with disabilities, through their daily experiences, are able to develop better insights of their architectural needs than most architects (heylighen, michiels & van huffel 2006). as imrie and hall (2001) argue, this: experiential knowledge of people with disabilities is critical in the shaping of building design and assisting with the formulation and direction of subsequent changes that keep the environment dynamic and responsive to changing needs. (imrie & hall 2001:337) regulatory frameworks and international building instruments as observed earlier, one of the challenges facing people with disabilities is ease of access to the built environment. a number of countries, particularly in the western world, have in recent years enacted regulatory framework in the forms of persons with disability legislations: planning and building regulations which require public buildings to be accessible (varol & erco kun 2006). in order to monitor and enforce accessibility in public buildings, building instruments are required to assess the standard of accessibility that should be achieved. a number of these instruments have been developed over the years (mace 1998) and they include the british standard 8300 (bs8300) (bsi group 2001), americans with disabilities act accessibility guidelines (adaag) (united states access board 1990) and a joint product by the united kingdom, united states of america and lebanon (solidere 2004). the main goal of these standards is to provide guidance on how the built environment can be designed to anticipate and overcome restrictions that prevent people with disabilities from making full use of the premises and their surroundings. typically, they provide a checklist of items that specify measurements which need to be met in order for the item to be accessible. examples of such items are the height of steps (risers), the depth of steps (goings), slope of ramps (gradient) and the type and quantity of sanitary appliances, et cetera. their recommendations include, but are not limited to, elements of construction and accommodation in general, specific building types and the management and maintenance for safe access and use by people with disabilities. although it took long and tortuous research to craft them, some of these international building instruments do still contain some deficiencies (feeney 2003). for example the bs8300 over-stresses restricted mobility, with little attention given to the needs of people with sensory and cognitive impairments (bichard, hanson & greed 2006). the ghana education service (ges) has an all-inclusive policy that seeks to provide education for all school children, including students with disabilities, and this has led to the establishment of specialist secondary schools such as okuapeman senior high school, wa senior high school for the deaf and mampong akwapem senior high technical school. the aim was to provide a congenial, safe and an all-inclusive environment and specialist training for the students in these schools. however, the reality is that the built environments in most of these specialist schools include buildings which are not disability-friendly, making the establishment of these schools redundant. furthermore, these specialist schools are not given the requisite financial, material and human resources needed for their specialist training. this often results in their abysmal academic performance, which is evidenced by the fact that none of the specialist secondary schools in the country belongs to the list of elite secondary (category ‘a’ and ‘b’) schools provided by the ges. the quest for higher education by students with disabilities is therefore made more daunting because, apart from their physical disabilities, they are expected to compete on merit with students from the traditional elite secondary schools that have better facilities for placement into tertiary institutions in the country. it is therefore not surprising that very few of these students gain admission into tertiary institutions in ghana. for this reason, in their quest to get quality education for their children with disabilities, most parents in ghana prefer enrolling these children in traditional secondary schools. one way of addressing this imbalance is to provide an accessible environment in some, if not all the traditional secondary schools. the present condition of these schools has also heightened the perception of neglect, discrimination and stigmatisation by successive governments. this perception has been deepened further by the fact that no attempts have been made since the passage of the pda in 2006 to revise the draft ghana building code (council for scientific and industrial research 1988) and national building regulations (ministry of works and housing 1996) which regulate the construction of buildings in ghana to include the concept of universal designs. as a nation, ghana therefore does not have a policy framework that regulates and obliges the stakeholders in the building industry to design and build structures that are disability-friendly. these anomalies motivated this research so as to contribute to the development of social consciousness with respect to the equal participation of persons with disabilities in secondary education in ghana. aim and objectives of study the aim of this study therefore was to determine whether buildings and facilities on the campuses of category ‘a’ senior high schools in ghana are barrier free and disability-friendly. specific objectives include comprehensive comparison of design in the built environment in secondary institutions in ghana to international standards and building instruments. it is our belief that through our findings we can bring to the fore the need for revision, enforcement and regulatory mechanisms in building designs to facilitate mainstreaming in secondary education in ghana. research method and design top ↑ materials three international standards and building instruments, namely the bs8300 (bsi group 2001), the adaag (usab 1990) and solidere (2004), were used to compile checklists and questionnaires for the quantitative measurements and the subsequent interviews. quantitative measurements, taken from the observed buildings, were compared to these standardised building instruments. qualitative data focused on the accessibility of the built environment, as stipulated in the abovementioned instruments, were obtained from interviews with the relevant stakeholders and institutions. setting and design for the task of data collection and subsequent data analyses, a descriptive, cross-sectional methodological approach was employed for this survey research. data were collected between 2008 and 2010 by final-year students of the department of building technology at the kwame nkrumah university of science and technology, kumasi, under the directive of the corresponding author. to ensure consistency, all research assistants were trained on the procedure of data collection, which included integration of both qualitative and quantitative methods. sample and data collection method the population for the study was the number of category ‘a’ public senior high schools in ghana, which stood at 65 in 2010. the ges has categorised these schools into four groups, with category ‘a’ schools being the most endowed in terms of academic performance and physical infrastructure (table 1). twenty-one of the category ‘a’ secondary schools were selected from eight out of the ten regions of ghana using non-random purposive probability sampling which was triggered by, amongst other things, the classification of the ges, the year of establishment, academic performance, student population, location, popularity and, in some cases, the number of prominent products produced in the country (table 2). a survey, which involved a one-time observation of randomly selected buildings and facilities in each school, was conducted on their level of compliance as per the building standards used. the breakdown of the gender of the selected schools is shown in table 3. a total of 705 elements in 264 buildings and facilities were surveyed in the schools and measurements were taken to the nearest 5 mm (table 4). questionnaires that centred on the number of students with disabilities and employees in each school, the approximate age of the buildings and the school’s policy on the admission of students were administered to the authorities of all the schools, out of which 14 were completed. in addition to the questionnaires, authorities in 11 schools were interviewed on some aspects of the questionnaires to buffer findings. authorities of the remaining 10 schools were either not available at the time of the interviews or refused to be interviewed. analysis the data gathered were analysed to determine the level of compliance of each element to the various buildings and facilities in the schools. the checklist and the questionnaire used for the auditing of the facilities and buildings were abridged from the requirements of the international instruments. the requirements were grouped under nine main elements (table 4) and the barriers within each element were graded from 1 to 4 (1 = no restriction, 2 = mild restriction, 3 = moderate restriction, 4 = complete restriction) by the corresponding author, based on that element’s level of compliance or restrictions in comparison with the standards. for ease of analysis, the barriers identified were further categorised into two main groups: none to mild restrictions and moderate to severe restrictions. table 1: categories of public senior high schools (n = 502) in ghana. table 2: list of schools surveyed in this study. table 3: distribution of schools by gender. table 4: type and number of buildings or facilities surveyed. table 5: level of compliance of elements in relation to international instruments. results top ↑ a total of 705 elements from 264 buildings and facilities in 21 category ‘a’ senior high schools in ghana were surveyed. each element was examined as per the requirements of the international instruments which were organised into nine main groups (see online appendix). the results indicated that in most institutions there were moderate to severe restrictions in seven out of the nine elements; except in signage and audible communication, where the level of compliance ranged from no restrictions to mild restrictions (table 5). car parks and garages all the schools surveyed had car parks which were used by both staff and visitors. the results (table 5) indicated that only 9.1% of the car parks had moderate restrictions and 90.9% had severe restrictions. this was due to the fact that apart from the absence of designated car parks for persons with disability in all the schools, a greater number of the existing car parks had uneven bituminous surfaces with potholes that were neither marked nor signposted. besides this, car parks of some senior high schools in the upper east region had lateritic (unpaved) surfaces which turned muddy during the rainy season. access routes to and around buildings on the contrary, the schools in the ashanti region generally had well laid out concrete or bituminous walkways that linked most of the buildings on their campuses. a school in the western region also had an oval-shaped tarred road network that linked all eight dormitories and other facilities in the school. vertical circulation: staircases, ramps and lifts vertical circulation refers to the vertical movement of people from one floor to another within or between buildings and facilities. building components that are usually employed to scale these heights include staircases, ramps and lifts. most of the buildings surveyed in this study were either two-storey (71%) or three-storey (3%) that were mostly accessed by staircases. a few of the staircases were complemented by ramps but none of the ramps had hand rails. for instance, only one ramp was seen in all the three schools surveyed in the greater accra region. in all, only 10 ramps had been provided in all the 264 facilities, of which 3 were accessible and 7 had moderate to severe restrictions. a major restriction of the ramps was that the slopes were steeper than 1:12, the gradient ratio required by the building instruments. also, whilst most staircases (94%) had adequate widths, uniform risers (height of a step) and goings (depth of a step), a few (9%) had no handrails.none of the schools had lifts or elevators, although it was required that all public buildings higher than one storey should have them. secondly, to facilitate the movement of wheelchairs, thresholds (differences between outdoor and indoor levels) should be bevelled and not be higher than 20 mm. nine out of ten entrances and doorways could not meet this specification. on the whole, 79% of the elements under vertical circulation had moderate to severe restrictions, whilst 21% had none to mild restrictions (table 5). horizontal circulation: entrances, corridors, verandas and floor surfaces the results of the building elements used for horizontal circulation (building entrances, verandas, corridors and floor surfaces, etc.) in the schools revealed that 68% of these elements were classified as having moderate to severe restrictions and 32% had none to mild restrictions. most building entrances and doors had colours that contrasted with their backgrounds and this enhanced identification. widths of doors were also generally adequate; at least 900 mm for single doors and over 1500 mm for double doors. most doors also had mortise locks with lever handles. compared with door handles with round knobs, the lever handles were easy to grip and therefore suitable for people with weak grips. for instance, 75%, 50% and 83% of the doors in the three volta region schools, respectively, met this adaag (usab 1990) specification. on the contrary, most of the building entrances had thresholds that were higher than 20 mm and were bridged with steps without ramps. floor finishes of most buildings were made of sand and cement screed although a few had polished terrazzo floors. in addition, most buildings had wide and straight corridors with level and slip-resistant surfaces and no obstructions. figure 1: the international symbol of access signage and information signage is very important in the built environment for easy identification and problems identified with signage by the building instruments included orientation difficulties resulting from illegible directional signs, building or room names and numbering and/or lack of them. others are pedestrian accidents and hazards that can result from the absence of or badly positioned signs and non-identification of access routes and accessible facilities in the built environment. about 87% of signage provided in the schools met the requirements of bs8300; that is, they had none to mild restrictions. in these cases, the signs and inscriptions were visible, clear, simple, and easy to read and understand. contrasting colours were also employed to differentiate letters from their backgrounds. on the contrary, some signs in some of the schools surveyed were faded or were written in chalk which got washed away by the rains. dormitories were the most signed buildings in the schools. a school in the western region had the names of all its dormitories signed boldly on their entrances. on the other hand, classrooms, laboratories, dining halls, libraries were rarely signed. the layout of one of the kumasi schools was mounted near the main school entrance to direct first time visitors to their final destinations on the campus. audible communication systems the main forms of audible communication in the schools were centralised sirens and mechanical bells which were sounded at scheduled times of the day to call or signal students at the various parts of their campuses. these communication systems were complemented with public address systems when students congregated at assembly halls, churches and dining halls. almost 91% of these devices had none to mild restrictions and only 9% had moderate restrictions (table 5). audible communication systems had the highest compliance amongst the nine items studied in the survey because most of them were functional; that is, they could be heard loudly and clearly at all the important locations in the various schools. general lighting general lighting constituted 24% of all items surveyed in the 264 facilities and it refers to natural and/or artificial lighting in the built environment. about a third (34%) of the facilities studied had severe restrictions, whilst 24% were without restrictions (table 5). it was also observed that natural lighting was generally adequate in all buildings and facilities of the schools because most buildings were carefully oriented to take advantage of sunlight during the day. in the few cases where natural lighting was inadequate, it was complemented by artificial lighting. however, the situation was different at night. the external environment of the schools such as car parks, walkways and access routes were either dark or dimly lit. only a third of all facilities surveyed had well lit internal spaces at night. some corridors, classrooms and dormitories were dimly lit, a situation that compelled even good-sighted students to strain their eyes to study or move about. partially or completely deaf students could not engage in lip reading under such circumstances. public telephones for public telephones to remain accessible, the building instruments require that they are provided at accessible locations at suitable heights. additionally, the telephones should be angled so that they can be used by people when seated and for the visually impaired persons, telephones should have well lit keypads, large embossed or raised numerals that contrast in colour and luminance with their background. furthermore, the directions to and from these telephones should be clearly marked by combining the international symbol of access (figure 1) and a telephone symbol (bsi group 2001). the survey indicated that 14% of the schools did not have any public telephones and there was only one public telephone in a school in the upper east region at the time of the survey. for schools that had them, 100% of the public telephones had moderate to severe restrictions. these restrictions resulted from the fact that none of the phones had directional signs, induction couplers and well lit pads with raised numerals. moreover, all the receivers were mounted at heights that were beyond the reach of wheelchair users. sanitary accommodation the results of the survey (table 5) revealed that people with disabilities faced severe restrictions in 83% of all restrooms in the senior high schools in ghana. not a single sanitary accommodation out of the total of 24 surveyed could be classified as having none or mild restrictions. the 17% of restrooms that were considered as having moderate restrictions for persons with disability were mainly bathrooms which had reasonably wide doors, non-slip floors, wide cubicles and taps fitted at the required heights. the following were examples of impediments observed at the existing sanitary accommodations in the schools:• there were no restrooms designated for persons with disability in all the schools and the existing restrooms had no vertical and horizontal grab rails. • doorways of the existing restrooms were not wide enough to admit wheelchair users and there were insufficient spaces in the cubicles for manoeuvring by wheelchairs users. • entrances to the restrooms were, in some cases, rigged with steps and other obstacles. • a school in the brong-ahafo region only had pit (the kumasi ventilated improved pit) latrines, which were not suitable for persons with disability. • some schools in the western region had cubicles with high level cisterns. summary of findings from questionnaires and interviews top ↑ below are the highlights of responses gleaned from interviews with some school authorities:• almost all the buildings (98.9%) surveyed were built before 2006; that is, before the pda (republic of ghana 2006) came into being in ghana. • no attempts have been made so far to alter and make these buildings and facilities accessible to persons with disability. • as a policy, the majority of these schools did not admit students with disabilities. • only 15 students with disabilities were found in the 21 schools and most of them were made to stay in dormitories and attended classes in classrooms that were located on the ground floors of buildings. • only five employees with disabilities were counted in the 21 schools. • some physically fit students had parents with disabilities who visited their wards at the schools. other people with disabilities who were not students, employees of the schools or parents also visited the schools from time to time. ethical considerations top ↑ this study was approved by the department of building technology at the kwame nkrumah university of science and technology. all authorities in the 21 schools selected for this research gave consent for the data gathered in their schools to be used for the research work and its subsequent publication. recruitment procedures and data protection the mode of data collection and analysis was in accordance with national and international standards. for instance, no student or school authority was obliged to give information. only those who gave their consent constituted the subjects for the study. interviews were conducted on a one-to-one basis and numbers instead of names were used for identification during the compilation and analysis of data to ensure the anonymity of the respondents. potential benefits and hazards because of the abovementioned data protection procedures, no risks to the subjects are anticipated. rather, it is the belief of the authors that findings from this research work will galvanise the social and political leaders into providing a more accessible built environment in secondary schools in ghana. trustworthiness top ↑ reliability apart from the measures mentioned under the ‘sample and data collection method’ section, only groups of final year students of the department of building technology who had adequate knowledge of the built environment and had been trained in data gathering were used in the survey. the groups, which were made up of 2–4 students, visited each school to take physical measurements, make observations of the elements studied and interview the subjects. they were sent in groups so that they could serve as a check on each other. secondly only heads of schools and final year students of the secondary schools were interviewed. the abovementioned measures ensured the reliability of the study. validity the findings and recommendations of the study were validated by some professionals of the built environment (architects, engineers and planners) in ghana. also, as noted in the ‘discussion’ section below, some of the results agreed with findings from similar studies in other countries. discussion top ↑ the absence of designated parking spaces in the car parks of the schools, coupled with the poor nature of the existing car parks, completely excluded persons with disabilities from using the of car parks. the state of the existing car parks was in sharp contrast to the requirements of the bs8300 (bsi group 2001), adaag (usab 1990) and solidere (2004) standards, which specified that designated public parking spaces should be provided for both employees and visitors with disabilities to a workplace and that they should be differentiated from spaces designated for other users. furthermore, all uncovered designated parking spaces should be located on firm and level ground with uniform and smooth surfaces and should be as close as possible to the main and all other accessible entrances of the building that uses the parking space. finally, all car parks with capacity for less than 50 cars should have at least one accessible parking space whose width should be more than 3.60 m.access routes in the majority of the schools, especially those in the northern and upper east regions, were unpaved and highly inaccessible. these results compare favourably with the results of a similar study on public buildings that included educational buildings in ibadan, nigeria , where hamzat and dada (2005) reported that 18.4% of buildings, 45.1% of the building entrances and 19.4% of the access routes were wheelchair accessible. the slight difference between the results of that study and the present one may be attributed to the type of disabilities covered in the two studies; this study covered orthopaedic, visual, hearing, tongue-speech and mental impairments, whilst hamzat and dada (2005) investigated only orthopaedic impairments particular to wheelchair users. the only exceptions to the poor access routes were the schools in the ashanti region, where the access routes enhanced the easy movement of wheelchair users and other ambulant (persons who walked with the help of walking aids) persons in these schools. the bs8300 (bsi group 2001) requires that access routes to and around buildings should be spacious and free from barriers, restrictions and other hazards that could impede free movement, because the provision of narrow approaches creates difficulty for persons with disability. modification of some of the inaccessible access routes in some schools is therefore required to provide the requisite firm, durable and safe surfaces. the fact that the majority of the schools have policies that excluded students with disability from gaining admission to the schools do not absolve them from blame if their built environment, especially their car parks and access routes, are not disability-friendly. this is because the survey showed that some schools employed people with disabilities. furthermore, some visitors and parents of students who visited the schools from time to time also had disabilities. this makes it even more imperative for all the schools to make their facilities more accessible to the entire public. the building instruments intimated that design problems normally associated with vertical circulation in buildings include differences between indoor and outdoor levels, steep and poorly designed staircases that hinder foot movement, unsafe railings, hard to grip handrails, poorly designed ramps, as well as lifts with inadequate cab space, narrow entry doors, high position of control buttons and short opening intervals. in the absence of lifts, the instruments specified that ramps should be provided whenever stairs obstruct the free passage of pedestrians. as indicated in the results, most schools defaulted on many of the abovementioned specifications. the problem of vertical circulation was felt more keenly in schools attended by students with disabilities, where arrangements had been made for these students, especially wheelchair users and other ambulant persons, to be located on ground floor dormitories and classrooms. this arrangement did not ameliorate the problem completely because other important school facilities such as laboratories, libraries and offices were located above the ground floors of buildings, which made them inaccessible to students with disabilities. on signage and information, the results indicated that, generally, most schools did not meet the requirements of the building instruments which specify that accessible spaces and facilities should be identified by the international symbol of accessibility, which consists of a wheelchair figure with either a square background or a square border (figure 1). contrasting colours are also required to differentiate the figure from the background. it is of interest to note that this symbol was not found on any of the 705 elements in all the 21 schools surveyed and this buttresses the point that most buildings and facilities in the schools were inaccessible to persons with disabilities. the role of good natural and artificial lighting in ensuring that visually impaired people are able to use buildings conveniently and safely cannot be overemphasised. the luminance on interior surfaces, the quality of the lighting, good colour rendering and the avoidance of glare are key requirements. older persons and people with visual problems are more sensitive to glare than younger persons. where one-to-one communication is important, for example between a teacher and a student, it is recommended by the bs8300 (bsi group 2001) that lighting should illuminate the face of the person speaking to make it easier for lip reading. the results revealed that the schools generally had poor artificial lighting. remedial measures to improve artificial lighting, especially for the poorly sighted students in the schools, could include replacement of burnt electrical bulbs, installation of additional lights and fixing of street lights. telephones in various forms have become one of the most used systems of communication worldwide. the situation is similar in ghana, where 17 436 949 (72%) and 277 897 (1%) people out of a total estimated population of 24 339 840 people owned cell phones and fixed lines, respectively, in 2010 (cia world factbook 2011; national communications authority 2011). the 21 schools surveyed had a total of less than 50 fixed line telephones between them for a total student population of over 40 000 students, which makes the density of fixed lines in the secondary schools very worrying when compared with the national density. the situation is even direr when one considers the fact that the use of cell phones is banned in all secondary schools in the country by ges regulations, which leaves the fixed lines as the only means of communication for the students. as a matter of urgency, the telecommunication companies and school authorities should therefore work together to ensure that more public telephones are not only installed but made accessible in the various schools to rectify this situation. according to the building instruments, problems associated with restrooms for persons with disabilities include insufficient space inside the restrooms, poor design and positioning of fittings and fixtures and sanitary appliance controls that are difficult to grab. in their studies, researchers in the uk and malaysia (bichard et al. 2005; rahim & samad 2010) discovered that public toilets were not accessible to persons with disability in their countries and this severely restricts usage by them (kitchen & law 2001). from the results of the present study, the exclusion of persons with disability from sanitary accommodation is also prevalent, even in the best secondary schools in ghana. the situation should be amended because students cannot stay in the schools without using the restrooms. school authorities will therefore seriously have to consider modifying, altering and reconfiguring their restrooms to make them universally accessible to all students. as noted earlier, most of the buildings surveyed were built prior to the passing of the pda in 2006 (republic of ghana 2006). thus their designers probably did not deem it necessary to make the built environment 100% accessible to people with disabilities. notwithstanding, no attempts have since been made to alter and make these buildings and facilities accessible to people with disabilities, a fact which the school authorities attributed to lack of funds from the central government. as a matter of urgency, the central government should make available funds for this purpose to give meaning to its policy of providing universal education to its citizens. also, as noted earlier, ghana as a nation does not have a policy framework that regulates and obliges the stakeholders in the building industry to design and build structures that are disability-friendly. with the passage of the pda (republic of ghana 2006), the draft ghana building code (csir 1988) and the national building regulations (ministry of works and housing 1996) should be revised and backed by laws to make it mandatory for all public buildings to be accessible to people with disabilities. it must be pointed out that nothing is gained by legislation without enforcement. the government must therefore have the political will to enforce this law through the relevant state agencies such as district, municipal and metropolitan assemblies and, where necessary, punish all defaulters. recommendations top ↑ based on the above discussion, the following recommendations are made to ensure the accessibility of the above school buildings by persons with disability:• retrofitting: facilities in all senior high schools should be improved or altered to meet the internationally accepted standards of a barrier-free educational environment. elements such as car parks, access routes, door widths, staircases, and public telephones should be altered and others, such as ramps, underfoot warnings, braille texts, grab rails in restrooms, signage and street lights, should be provided to facilitate the use of the school environment by people with disabilities, including students, employees and visitors. the government, as the owner of most of these public buildings, should provide budgetary allocations for this exercise. • workshop and seminars: major stakeholders such as the government, policymakers, non-governmental organisations and persons with disability groups under the ghana federation of the disabled should collaborate and organise workshops and seminars to educate the general public on the need for barrier-free built environments. public education through the electronic and the print media can also be carried out. these activities will sensitise the general public, who are mostly oblivious to the needs of persons with disabilities in society, and this will eventually accelerate the rate of integration of these persons into mainstream society • professional institutions: professional institutions of the built environment, such as the ghana institute of architects, the ghana institution of engineers, the ghana institute of planners and the ghana real estate developers association, should organise workshops and seminars to retrain and sensitise their members on the need for barrier-free designs. • educational training: the ges should encourage institutions, such as the polytechnics and universities that train practitioners of the built environment, to introduce courses on universal design in their curriculum. this will equip their students for their subsequent professional lives. conclusion top ↑ the future of every community or country is determined by the level of education of its citizens, of which persons with disabilities form part. from the findings of this study, it is evident that the access needs of persons with disabilities in the 21 secondary schools were barely considered in the design and construction of the schools. this anomaly was partly resulted from the fact that most of the buildings surveyed were constructed before the passage of the pda in 2006 (republic of ghana 2006). the generally low proportion of accessibility of the various elements has had negative implications for students with disabilities who attend some of these good secondary schools in ghana. it is therefore not surprising that most persons with disability end up begging for alms on the streets and in market areas. integration of people with disabilities into main senior secondary education system poses lot of challenges because of the huge deficiencies in the built environment that hamper smooth academic work. with the present conditions of buildings and facilities in our senior high schools, persons with disability can only attend these schools with the help of permanent assistants, a situation that is neither tenable nor sustainable for most students. a change in the situation with the help of all stakeholders in government, the construction and educational systems is therefore necessary. acknowledgements top ↑ the authors acknowledge the immeasurable contributions of several past students of the department of building technology at the kwame nkrumah university of science and technology, kumasi, who gathered and confirmed the data. competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this paper. authors’ contributions a.k.d. (kwame nkrumah university of science and technology) was the primary investigator, f.e.o-a. (kwame nkrumah university of science and technology) wrote and prepared the manuscript for publication and d.a. (kwame nkrumah university of science and technology) assisted with data collection. references top ↑ bichard, j., hanson, j. & greed, c., 2006, ‘away from home public toilet design: identifying user wants, needs and aspirations in designing accessible technology’, urban studies 83(2), 132–137.bsi group, 2001, british standard 8300: design of buildings and their approaches to meet the needs of disabled people – code of practice, bsi group, london. cia world factbook, 2011, ghana population: historical data graphs per year, viewed 26 february 2011, from http://www.indexmundi.com/g/g.aspx?c=gh&v=21 council for scientific and industrial research, 1988, draft ghana building code part 1 & 2, building and road research institute, kumasi. feeney, r., 2003, ‘bs8300 – the research behind the standard’, paper present at the international workshop on space requirements for wheeled mobility, new york, 09–11 october. ghana education service, 2011, ‘computerized school selection and placement system (cssps) guidelines for selection of schools for placement’, ghana education service register of programmes for public senior high school, ges, accra. ghana federation of the disabled, 2008, disability situation in ghana, viewed 26 february 2011, from http://www.gfdgh.org/disability%20situation%20in%20ghana.html gleeson, b., 2001, ‘disability and the open city’, urban studies 38(2), 251–265. http://dx.doi.org/10.1080/00420980123531 hamzat, t.k. & dada, o.o., 2005, ‘wheelchair accessibility of public buildings in ibadan, nigeria’, asia pacific disability rehabilitation journal 15, 115 –124. heylighen, a. michiels, s. & van huffel, s., 2006, ‘towards universal university buildings’, decision support tools and policy initiatives in support of a universal design of buildings, polis/bas conference proceedings, brugge, belgium, 16– 17 november 2006, pp. 1–10. imrie, r. & hall, p., 2001, ‘an exploration of disability and the development process’, urban studies 38(2), 333–350. http://dx.doi.org/10.1080/00420980124545 kitchen, r. & law, r., 2001, ‘the socio-spatial construction of accessible public toilets’, urban studies 38(2), 287–298. http://dx.doi.org/10.1080/00420980124395 mace, r., 1998, ‘a perspective on universal design’, paper presented at the designing for the 21st century: an international conference on universal design, boston, 19 june. ministry of justice, 2005, 1992 constitution of the republic of ghana, ministry of justice, accra, pp. 1–190. ministry of works and housing, 1996, national building regulations l.i. 1630, assembly press, accra, pp. 1–172. national communications authority, 2011, industry information, viewed 26 february 2011, from http://www.nca.org.gh/51/116/industry-information.html oliver, m., 1990, the politics of disablement, the macmillan press ltd, basingstoke, pp. 1–152. rahim, a.a. & samad, a.a., 2010, ‘accessible built environment for the elderly and disabled in malaysia: hotels as case studies’, journal of construction in developing countries 15(2), 1–21. republic of ghana, 2006, persons with disability act 2006 (act no. 715 of 2006), parliament of ghana, accra. solidere, 2004, accessibility for the disabled, a design manual for a barrier free environment, urban management department of the lebanese company for the development and reconstruction of beirut central district (solidere), beirut. united states access board, 1990, americans with disabilities act: accessibility guidelines for buildings and facilities, viewed 26 february 2011, from http://www.access-board.gov/adaag/adaag.pdf varol, ç.g. & erco kun, ö.y., 2006, ‘building partnerships for the integration of disabled to the city: creating accessible spaces in çankaya, ankara’, paper presented at the 42nd isocarp congress of cities between integration and disintegration, istanbul, 14–18 september. wylde, m.b.a., baron-robbins, a. & clark, s., 1994, building for a lifetime: the design and construction of fully accessible homes, taunton press, newtown. abstract introduction significance of the study methodology theory and literature findings study limitations conclusion acknowledgements references footnote about the author(s) keresencia matsaure mufakose mhuriimwe high school, harare, zimbabwe agness chindimba deaf women included & centre for special needs education, great zimbabwe university, masvingo, zimbabwe felistas r. zimano department of human resources – ppa, great zimbabwe university, masvingo, zimbabwe fayth ruffin school of management, it and governance, university of kwazulu natal, durban, south africa citation matsaure, k., chindimba, a., zimano, f.r. & ruffin, f., 2020, ‘looking under the veil: challenges faced by people with disabilities in cross-border entrepreneurship’, african journal of disability 9(0), a645. https://doi.org/10.4102/ajod.v9i0.645 original research looking under the veil: challenges faced by people with disabilities in cross-border entrepreneurship keresencia matsaure, agness chindimba, felistas r. zimano, fayth ruffin received: 03 may 2019; accepted: 18 june 2020; published: 02 sept. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: cross-border entrepreneurship is one source of livelihood that is transforming people’s lives, especially those with limited resources and educational qualifications and those in need of supplementary earnings to complement meagre formal earnings. however, despite strides made to make this avenue worthwhile, this zimbabwean study shows that hidden hindrances still persist from procedural and structural barriers from road entry point management systems. to people with disabilities (pwds), the impact of these hidden barriers is severe to the extent of obstructing their optimum progression into cross-border entrepreneurship. objectives: this article sought to interrogate some veiled challenges in border management systems affecting pwds’ quest to venture into cross-border entrepreneurship. this angle has, to this end, been timidly addressed as most organisations and legislation have concentrated on making things work for the majority of the populace. method: qualitative phenomenological method in which researchers’ lived experiences, review of literature, ideas and opinions is complemented by secondary survey data from a road entry point management system study in the zimbabwean setting. results: cross-border entrepreneurship has potential to transform people’s lives: 1) road and border management systems’ procedural and structural complications present hidden challenges impeding pwds’ entry and optimum participation in cross border entrepreneurship, 2) people with disabilities are not automatically dependents; in fact, most have dependents looking up to the, 30 social construction of disability persists and must be curbed and 4) there is a need to institute a ‘stakeholders triad approach’. conclusion: the existing road entry points’ management systems are not informed by considerations from pwds, hence the existence of hidden challenges. cross-border entrepreneurship can open significant livelihood avenues to pwds. a stakeholders ‘triad-approach’, proposed herein, can solve some of the policy discrepancies as it recommends utilising inputs from pwds, research and policy-makers. keywords: pwds; disability entrepreneurship; pwd’s empowerment; trade facilitation; cross-border trade. introduction small to medium entrepreneurship (sme) is emerging as a viable source of livelihood and large-scale empowerment. in zimbabwe, the springboard for most entrepreneurs at this level is in the cross-border trading (muzvidziwa 1998; zimano & ruffin 2017). this brings to the fore the issue of movement of people and cargo across national frontiers and the associated requisites. it is an acknowledged and established fact that most small-scale cross-border trade is done by road, which in zimbabwe is by and large to the adjoining countries: zambia, mozambique, south africa and botswana, whilst outside these adjoining territories, smes occasionally travel as far as namibia, the democratic republic of congo (drc), tanzania, swaziland, lesotho, malawi and kenya by road (tawodzerwa & chikanda 2016). in all these endeavours, traders encounter impediments associated with road entry point management systems (repms) as they cross borders. impediments emanate, inter alia, from systems associated with entry points’ infrastructure (soft and hard) as well as procedural requirements. in addition, muzvidziwa (1998) established an array of challenges that include high crime and theft of cash and goods. these challenges have been so persistent that they are slowly becoming inherent aspects of cross-border trade. this article submits that it is possible to eliminate these challenges for people with disabilities (pwds) if policy-makers and implementers attend to some fundamental infrastructural and procedural facets of repms (zimano 2017). the approaches in addressing repms challenges adopted by countries seem to be ignorant of the impact of the existing repms on pwds. of late, much effort has been done revamping systems of their weaknesses culminating in adoption of ‘healthy’ infrastructure and procedures in most cases with the intention of improving passage for all. however, despite progress made towards empowerment, the world is leaving some groups behind (hanass-hancock et al. 2017). by so doing, various sections of the society remain excluded from mainstream activities. whilst most developments in repms have eased movement of people from one country to another, there remains a lot to be done for pwds. to date, pwds still face a myriad of prejudices in different commonplace experiences fuelling their exclusion in activities that are of economic value (jaeger & bowman 1974; quarmby 2018. for example, nuwagaba (2016) laments and exposes the inaccessibility of microfinance services by pwds in uganda because of policy and practice discrepancies. the failure to access microfinance services may perpetuate exclusion of pwds from main economic activities. this is one case amongst several others that will be presented in forthcoming sections that justify the need for revamped multidisciplinary and stakeholder approaches to solving this and other problems faced by pwds in this sector. by highlighting the importance and extent of cross-border entrepreneurship in modern day life, this article situates the importance of repms into this debate. it brings out issues of hidden disablers as core elements of discussion showing that some hindrances that pwds are facing are not naturally occurring because of their physical disabilities but they are a result of omissions or commissions in design and implementation of repms infrastructure and procedures. a study on various zimbabwean repms brings secondary insights that are used herein to expose those not so obvious border-systems-related challenges affecting the progression of pwds into cross-border entrepreneurship. most pwds are found in developing countries (quarmby 2018; zimano & ruffin 2018). as such, using the zimbabwean case can give significant insights into this phenomenon. with the understanding of the social construction theory, this article exposes ways in which the society is reinforcing some hidden challenges at border points and eventually perpetuating the exclusion of pwds from participating in cross-border entrepreneurship. the social construction theory brings out ideas that challenges society to stop automatically viewing pwds as ‘dependents’ as this takes away their independence militating against their empowerment. some societies consider disability as a curse or punishment from god or ancestors (ngubane-mokiwa 2018). such views reduce effectiveness of initiatives whilst marginalising pwds (cleaver et al. 2018). besides, most pwds have social responsibilities and desires to shoulder that there is a need to facilitate their optimum inclusion in all facets of life. by viewing them as automatic ‘dependents’, the society negates its duty of empowering pwds to be independent in spite of impairments. accordingly, this article brings together issues in repms that manifest as hindrances to pwds entrepreneurship to expose how the society has created the barriers by failing to recognise the need of all the various stakeholders interacting with repms in their economic activities. significance of the study the study is of importance in aiding the empowerment agenda to enable optimum participation of pwds in cross-border entrepreneurship. the study brings out findings on existing repms to expose the hidden challenges affecting pwd. this study also adds to the body of knowledge of the general structural and procedural hindrances in movement of people across borders and possible ways to alleviate them. methodology the design used herein combined review of literature and qualitative phenomenological approach in the zimbabwean repms setting. crucial to this research is the researchers’ lived experiences in which one of the researchers is a person with disability and pwds empowerment activist. this brought in the aspect of qualitative phenomenology to this study. phenomenological study is one that capitalises on lived experiences (hosken 2018). the study also utilised secondary surveys and observations findings from an earlier study on four border points on zimbabwe’s territorial borders (plumtree, chirundu, beitbridge and nyamapanda). these borders were picked at random after first stratifying the 16 border points on zimbabwe’s territorial lines by their geographical location. each of the four locations thus contributed one border to the study. ethical consideration ethical approval to conduct the study was obtained from the research ethics committee of the university of kwazulu-natal (ethical clearance number: hss/1165/015d). theory and literature findings although the main thrust of this article revolves around repms and entrepreneurship, this part tackles the concept of disability. this lays the foundation into rationalising this whole article by attempting to answer a number of sub-questions, such as: what informs policy makers to make some decisions without considering pwds’ plight? what causes society to offer mere sympathy rather than empowerment to pwds? are all pwds dependents? how do social labels impede empowerment of pwds? there is popular perception that pwds are dependents (barnes 2000; oliver 1989). this is the first issue that must be addressed in pwds’ empowerment. dependency implies that one is not able to assist own self in some or all everyday tasks leading to reliance on others (oliver 1989). in as much as pwds have physical challenges impeding their optimum functioning, they have desires whilst most also have responsibilities. the adult with a family, for example, has to carry out all duties and responsibilities expected of a parent to their children. thus, pwds equally want to get for themselves and be able to provide for their children all the basic needs as identified by abraham maslow’s hierarchy of needs theory. these needs are, in ascending order, physiological, safety, love/belonging, esteem, self-actualisation and self-transcendence (tay & diener 2011). all these come with associated expenses. as such, empowerment must give one the capacity and ability to meet daily life expenses. examples of basic daily expenses are listed in table 1. table 1: day to day expenses associated with human needs. to be able to meet these daily financial demands and more, pwds must be empowered to fend for themselves in their conditions. this means alleviating the barriers to their participation in available opportunities. united nations (2017a:1) in the convention of the rights of persons with disabilities and optional protocol’s preamble item (e) recognises disability as: an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society of equal basis with others. (p. 1) this means one’s abilities are reinforced or limited by the attitudes that a community holds and the conditions that the environment offers. a community with retrogressive attitudes can push someone’s abilities down whilst a progressive community can avert the loss of abilities. the same applies to the environment – the availability of an enabling environment can go a long way in curtailing what one can and cannot do. the issue of the ‘dependents’ tag is also linked to these attitudinal barriers. the ‘dependents’ tag, indicated above, comes with several consequences. it affects pwds’ psychological disposition as biological factors and social factors interact in creation of a disability (wendel 1996). this is a situation whereby one’s mind is skewed into believing they cannot fend for themselves leading to a dependency syndrome. both pwds and their families can hold expectations to charity which reinforce their exclusion (nuwagaba & rule 2016). the ‘dependents’ tag also culminates in social construction of disability. the social arrangements and beliefs can make a biological condition more or less relevant to almost any situation (andrews 2012; wendel, 1996). this means the extent of a biological condition depends on the beliefs that a society holds. therefore, the dependency tag given to pwds is purely a creation of modern industrial societies’ policies (oliver 1989). finally, the ‘dependents’ tag leads to the creation of several hidden hindrances as policy makers fail to prioritise the plight of pwds in their planning because once pwds are classified as having little value then very little will be done to provide them equal access (jaeger & bowman 1974). in this way, the context will be set for the creation of disability as the interaction between societal attitudes and available infrastructure shape disability (swartz & schneider 2006). this occurs because pwds will be falling outside the category of key consumers of facilities or policy provisions. most developing countries, for example, use charity or medical models of disability – models which view pwds as sick or childlike people who have to be taken care of (rugoho & chindimba 2018). policy-makers concentrate on empowering those without disabilities with the perception that these in turn shoulder the responsibility of looking after pwds – ‘dependents’. as such many policies targeting pwds are rooted on the assumption that they will get personal assistance from family members, children or spouses (barnes 2000). this oversight is evident in zindiye, chiliya and masocha’s (2012) analysis of ‘targeted support’ in which they exposed extensive government support towards ‘cluster-based development’, ‘gender dimension in development’, ‘youth development’ and ‘rural focus’. although pwds fall into all those groups, they should have been afforded their own category as initiatives in the said groups will not necessarily address their plight. such prejudices reduce their levels of access in society (jaeger & bowman 1974). this shows how, by itself, the ‘dependents’ tag blindfold those pwds and the society from reality. there is a need to work towards eliminating that. once pwds get classified as people of value in society, then issues of equal access become social concerns (jaeger & bowman 1974). however, the removal of the ‘dependents’ tag does not come through rhetoric. the convention on the rights of persons with disabilities and optional protocol covers everything from their rights through to empowerment issues. for them to be able to fully enjoy their rights, there is a need for awareness and provisions of empowering strategies. empowerment comes through provision of enablers to ensure the independence of pwds. one such, as listed in the convention is entrepreneurship. the world over, entrepreneurship has emerged as a viable source of livelihood (tawodzerwa & chikanda 2016; zimano & ruffin 2018). in zimbabwe, people engage in several entrepreneurship ventures but cross-border entrepreneurship seems to be top amongst the most popular (muzvidziwa 1998; tawodzerwa & chikanda 2016; zimano 2017). in order to ensure that pwds also actively venture into this source of livelihood, there is a need to remove the disablers in the cross-border entrepreneurship environment. cross border entrepreneurship as empowerment cross border trading is changing people’s lives for the better (escap 2014; muzvidziwa 1998). the practices of cross-border movements in general and cross-border trading in particular are not a new phenomenon. in africa, this practice dates back to times before the arrival of the colonisers as cross-border movements can be traced back to the mfecane period in places like south africa and zimbabwe (hungwe 2012). most cross-border entrepreneurs start plying the trade informally with recruitment happening in friendship networks. research has shown that 85% of people in cross-border entrepreneurship were initiated by friends whilst the remaining 15% is by kin (muzvidziwa 1998). there is evidence showing that a lot of people who venture into this type of livelihood eventually take it as their lifelong source of livelihood. some respondents to a survey on cross-border trade complementing this study indicated that they had been in the trade for more than three decades (zimano 2017). the high numbers of people taking up this source of livelihood testify to its viability both to the country and at household level (titeca & kimanuca 2012). in order to appreciate what those failing to venture into this trade are losing out, there is a need to unpack some of the benefits accruing to those in the trade. cross-border entrepreneurship and any other informal entrepreneurship in general, is less capital intensive and normally start informally (marunda & marunda 2014; zindiye et al. 2012). this can be a starting point as majority of pwds live in conditions of poverty (united nations 2017a). without significant capital, one can start by buying and selling very few items. one can also access viability of desired venture before committing too many resources. one can also choose to venture into entrepreneurship at individual level (marunda & marunda 2014). that is why a lot of low income earners have found it viable (muzvidziwa 1998; titeca & kimanuka 2012). it can also be done through self-financing. self-financing has several advantages anchored by the independency entrepreneurs get. it eliminates complex partnerships, allows one to venture into aspirations of their desire whilst proceeds go directly for personal use and quitting can be done without strenuous procedures (cornwall, vang & hartman 2009). there are no deterrent educational qualifications requirements for entry. some survey respondents indicated having only elementary education (zimano 2017). this means those people with lower educational qualifications can utilise this to their advantage. the informal sector significantly contributes towards poverty alleviation and employment creation because of its ability to absorb unskilled and semi-skilled workforce who would ordinarily be left out of formal employment (chingwenya & mudzengerere 2013). a lot of pwds in developing countries fail to secure employment because they do not have sound educational qualifications (naami 2015). in such instances, venturing into entrepreneurship allows one to utilise skills and knowledge that falls outside basic educational qualifications. a lot of people are making a living travelling to other countries to engage in activities like hair plaiting, laundry services, menial jobs and seasonal farm working. there are public and private bodies assisting those venturing in cross-border entrepreneurship. in zimbabwe, several opportunities are availed through the ministry of small to medium enterprises and cooperatives development. this was established in 2002, as the then ministry of small to medium enterprises showed the government’s realisation of the sector’s growing importance (chivasa 2014). this ministry promotes and coordinates financing schemes for smes; it also facilitates linkages, and provides skills and management training support. these efforts are complemented by several private players through loan facilities, educational programmes and social support. examples include social clubs, church organisations, well-wishers and community out grower schemes amongst others. in zimbabwe, the government deliberately endeavours to motivate the growth of smes through tax relief as they are not subjected to full rates of tax whilst tax rebates and discounts are extended to most of their acquisitions (zindiye et al. 2012). clearly, venturing into self-employment and entrepreneurship is being made relatively easy. although self-employment is categorised as vulnerable employment by the united nations (2017b), it is better than staying without any productive economic engagement. employment is characterised as being vulnerable if it falls into low income bracket, does not give one job security and also lacks job-related benefits (naami 2015). nevertheless, self-employment gives satisfaction and happiness to pwds as compared to their counterparts in formal employment as they get to make their own decisions (marunda & marunda 2014; naami 2015). this is consistent with the human needs discussed in earlier in this article. this satisfaction is required for the psychological stability. self-employment also comes in handy by providing flexible working hours for pwds (naami 2015). they can properly plan their work taking into consideration their executing capacity. in the context of cross-border entrepreneurship, self-employed pwds can schedule their travel taking into consideration weather patterns and other factors such that they travel when favourable to them. cross-border entrepreneurship can be one’s form of employment from early adulthood years up until later years of life. survey respondents median age was 31 years (inter quartile range was 19 to 60 years) (zimano 2017). this is because there is readily available mentorship from established entrepreneurs. even in the absence of basic mentorship, one can learn the basics of the trade through observing and imitating (muzvidziwa 1998). the various items that people trade in allow people to adjust and remain in the trade until old age. the young and ambitious ones can venture into fast selling goods and travel far and wide in the region. those getting older can adjust their trade to suit their capabilities and limit travelling. there is a ready market for cross-border entrepreneurs’ goods and skills (titeca & kumanuka 2012). this is because entrepreneurs cover the gap between the consumers and the industries. they help by breaking bulk by delivering just the right quantities to meet the consumer’s needs. cross-border entrepreneurs take wares to other countries for sale whilst bringing in goods from other countries into the local market (tawodzerwa & chikanda 2016; titeca & kimanuka 2012). in so doing, they bridge the gap in the distance for those who are formally employed and who might not have time to travel. the informal cross-border courier business, malaitsha or magumhagumha,1 is also another thriving source of income for enterprising people. the cross-border entrepreneurship provides supplementary income for enterprising formally employed individuals. this is because of the flexibility it offers in terms of working hours. some people in formal employment travel to neighbouring countries over the weekend to get stock. they then go by ‘handbag’ retailing in which they move around with small wares for sell at their workplace, in their neighbourhoods and places of worship. as such, even pwds need to go an extra mile even in cases where they get social security grants from governments. these grants are usually insufficient to meet all their basic needs (ned & lorenzo 2016). to this end, it is clear that cross-border entrepreneurship is less capital intensive, open even to people with lower qualifications, provides supplementary income for families and exposes players to new markets and knowledge amongst several other advantages. these advantages are most likely the rationale behind calls to help pwds to venture into entrepreneurship enshrined in article 27(f) of the convention on the rights of persons with disabilities and optional protocol as it talks about the promotion of self-employment opportunities, entrepreneurship, venturing into businesses and cooperatives development (united nations 2017a). however, these benefits do not come on a silver platter. there are hindrances that have militated against its growth and sustainability. several cross-border smes indicated their desire to formalise their trade but cited procedural red tapes as key hindrances (zimano 2017). this has seen most opting for informal routes that are risky – some end up losing their goods, health and even life in the process (titeca & kimanuka 2012). pertinent to the challenges cited were the problems associated with clearing goods on countries’ borders. this means there is a need to give undivided attention to the place of repms in the empowerment debate in order to get an understanding of how they have led to the creation of obstructions for pwds. this is because outside the social security grants they sometimes receive from government, there is still limited economic empowerment for pwds (ned & lorenzo 2016). the place of road entry point management systems the challenges faced by people in cross-border movement of goods and trade are either tariff barriers (tbs) or non-tariff barriers (ntbs). tariff barriers are wide and varied taxes imposed on imports in order to protect local industries by making imports more expensive than domestic products (farlex financial dictionary 2012). they include ad valorem (tax assessed on merchandise), duties (charged by weight, volume, length or any other unit), compound interests, alternative duties, value added tax amongst other things (manzella 2001). on the other hand, ntbs encompasses restrictions emanating from prohibitions, conditions or market specifications that complicate the importing or exporting of products (comesa-eac-sadc n.d.). however, even though tbs create hindrances for cross-border smes because of their feeble financial muscle and meagre technical know-how, this article is not to prioritise tbs issues. this is because tbs do not selectively affect people because of their physical abilities. the thinking is that anyone with the financial strength (through self-financing or loans) and technical knowhow (personal or through consultations) can properly register a company and competitively operate above board regardless of being with or without disabilities. as such, the focus from now will be on ntbs. these have a selective impact on people depending on one’s physical abilities. non-tariff barriers, unlike tbs, are usually difficult to quantify or measure and are often hidden (manzella 2001). non-tariff barriers are factors, besides taxes, that impede the flow of trade (xiong 2012:13). they are those things that are not pronounced in monetary terms. they revolve, mostly, around procedural and infrastructural issues that disturb the smooth cross-border movements of goods and traffic. for itself, there is a need to understand the repms in use before one can properly appreciate the prevalence of ntbs and subsequent hindrances affecting pwds. in this article, the focus is limited to procedural and infrastructural ntbs occurring in the southern africa development community (sadc) entry points with an impact on pwds as evidenced in the case of zimbabwe repms. it is also needed to appreciate that disabilities occur because of a wide and varied reasons. ‘disability can manifest as a physical or cognitive issue coming from a range of factors – genetics, accident, external circumstances or advancing age’ (jaeger & bowman 1974:6). this should open readers’ minds to understand the far-reaching impact of prejudices affecting pwds. there are two types of repms in sadc: the one-stop-border-post (osbp) and the two-stop-border-post (tsbp). the osbp system is in use at chirundu – the border between zambia and zimbabwe (kassee 2014:105). under this system, vehicles and travellers crossing borders go through entry and exit formalities in one facility eliminating double stoppage and duplication of procedures (wto 2011). before the osbp was introduced at chirundu, trucks took two to three days to be cleared. this was reduced to 2 h by osbp system (zimano 2017). the main thrust for such an initiative is trade facilitation through reducing time at the border and cross-border transactions. trade facilitation refers to the capacity for goods to be moved across national borders (hewitt & gillson 2003). the rest of the entry points on zimbabwe’s territorial borders use the tsbp in which transporters and travellers stop and get exit clearance as they emigrate before making another stop for immigration formalities into the neighbouring country. whether osbp or tsbp, one goes through procedural issues and also interact with the facility’s infrastructure. this is where, because of omission or commission as mentioned earlier, the procedural and infrastructural ntbs emanate form. procedural ntbs relate to the way things are done. on the other hand, infrastructural ntbs pertain to the hindrances from interaction with the hard and soft components of the entry point. infrastructure in place contributes to the experience of living with disability (swartz & scheider 2006). zimano’s (2017) study established several such ntbs occurring on zimbabwe’s entry points as shown in table 2. table 2: procedural and infrastructural non-tariff barriers on entry points. non-tariff barriers listed above affect all entry point users; living with disability or not. some of the ntbs result in unprecedented clearance delays. this comes with its associated vices like loss of goods, physical body strain leading to fatigue and corruption as people try to use unorthodox means to hasten their clearance amongst several other challenges. however, over and above this, by their negative impact, the ntbs create hidden disablers for pwds. most of these issues are consistent with those highlighted under ‘accessibility’ issues; article 9, in the convention on the rights of persons with disabilities and optional protocol (united nations 2017a). accessibility issues entail the rights to equal participation in ways free of mental or physical constraints (jaeger & bowman 1974). ‘access can be viewed in terms of physical access (e.g. to objects) and intellectual access (e.g. to ideas and information)’ (jaeger & bowman 1974:20). the procedural ntbs listed above culminate in delays. firstly, there is the issue of multiplicity of players and duplication at the entry points. according to widdowson and holloway (2011): contemporary border management reflects a complex interplay between a variety of actors in international trade, both across government through its public sector agencies and between government and the private sector. (p. 95) various ministries are involved in repms operations, including those involved in revenue collection, animal and plant quarantine, transportation and vehicle inspections, immigration and security (zimano 2017). in this case, the procedural ntbs are reinforced by infrastructural ntbs. the absence of a single-window clearance system means players operate from different clearing points. players usually lack interface such that one moves to and fro several counters before getting cleared. when clearing at beitbridge one has to pass through the police department which is situated in its area before reporting to customs (munyanyi 2015). the absence of single-window clearance systems with sound interface presents challenges to pwds, especially those with mobility limitations. these often use wheelchairs or clutches (visagine et al. 2016). offices that require people to move from one office to another complicate everyone’s abilities but worsen the plight of pwds. there is evidence that the employees manning borders in different departments lack or choose not to implement contemporary border efficiency management skills (zimano 2017). even though significant investments by governments and the development community have been made into border management reform and modernisation, there will be no changes to performance unless the changes in infrastructure are accompanied by the adoption of modern ways of managing the borders (zarnowiecki 2011). there is generally poor organisational culture culminating in low morale leading to a lack of urgency in the way clearance is done (zimano 2017). this often results in clearance delays resulting in holding bays overcrowding. this is why most borders are marred with crowd related problems in which law enforcement agencies have sometimes resorted to using force. this is not favourable to pwds who might not be able to withstand the chaotic environment without getting injured and losing their goods in the process. another procedural ntb listed is that all but one, beitbridge, entry points do not operate 24 h. the relatively busy entry points like plumtree and chirundu only get seasonal waivers to operate 24 h. with the absence of proper holding areas, such operational hours present challenges to pwds especially those with the albinism condition. albinism is an inherited condition in which ones’ system does not produce melanin thus becoming prone to sunburns and subsequently skin cancers (eds. parker & parker 2003). almost all the zimbabwean borders, save for forbes and espungabera manicaland, are in climatic regions 4 and 5. zimbabwe’s climatic regions 4 and 5 receive annual rainfall below 600 mm and are characterised with severe dry spells (usda 2017). to make matters worse, the most relevant entry points for cross-border entrepreneurship: plumtree, beitbridge and chirundu are in climatic region 5 which receives the most extreme hot temperatures than the rest of the country. the initiative to have the beitbridge entry point operating 24 h is good because people with skin pigmentation disabilities can plan their journeys and capitalise on evening hours when temperatures will be a bit favourable to them. however, this will only work to their advantage if there are no delays in clearance at the borders. with the rest of the entry points that do not operate 24 h, travellers have to brave the daytime extremely high temperatures. this, coupled with the absence of properly air temperature conditioned holding halls, deter the participation of people with albinism in cross-border entrepreneurship as they cannot risk exposing their skin to such conditions. the low performance and utilisation of information and communication technology (icts) also present infrastructural ntbs on entry points. embracing the e-business models, as well as putting measures in place to ensure that the ports operate effectively can lead to effective trade performance in the sadc region (makochekanwa 2013). information and communication technology encompasses both physical and intellectual access (jaeger & bowman 1974). however, there is evidence that systems lack compatibility, network systems do not allow total interconnectivity, the systems are not fully automated whilst systems also lack interface (zimano 2017). all these challenges erode the benefits of icts that should be alleviating most of the woes at entry points. a good number of pwds can operate and own wireless devices. these gadgets offer substantial cross cutting opportunities from independence, social participation and education right up to basic security (bornman et al. 2016). such ‘technological advances can even eliminate a disability’ (jaeger & bowman 1974:6). by utilising mobile money banking systems available on most mobile service providers platforms, cross-border entrepreneurs reduce the risk of moving around with large amounts of hard cash. the poor interconnectivity wears down such benefits of paperless transactions. paperless trading is also an effective way of reducing trade costs (escap 2014). in cases of communication breakdown with the officials manning the borders from various departments, pwds can contact their next of kin back home and get assistance over their mobile phones and various computer-based communication platforms. computer technology has recognised potential to enhance pwds’ ability to participate alongside wireless technology advances (bornman et al. 2016; mosito, warnick & esambe 2017). however, the absence of sound interconnectivity eliminates all this associated security and convenience reflexively creating hidden disablers for pwds. the proper use of signs, symbols and verbal cues at entry points is very limited. these researchers made a random check of the signage at entry points to great disappointment and confirmed munyanyi’s (2015) observation that information centres are either rundown or unmanned. the most visible signs are only those for ablution facilities and prohibition signs. most clearance halls nowadays utilise the overhead voice amplifier systems to issue supplementary regulatory messages without supplementary sign translations for people with hearing impairments. this shows an oversight as the deaf will not be able to get such messages. this shows a downside in the use of mechanised tools without extensive considerations resulting in deprivation for pwds (barnes 2000). in the absence of televised screens translating overhead voice notices, this group of people will remain in the dark. this is coupled by the fact that, besides the negative stigma already associated with hearing loss, people living with this type of disability inherently do not like to admit their having the condition and in most cases do not want to ask (green, maphosho & khoza-shangase 2015). this leads to communication breakdown. once there is communication breakdown, there are chances that someone with hearing disabilities will act in a manner inconsistent with the procedures announced orally creating an environment for unhealthy confrontations and contradictions. in the case of those with visual impairments, the signs do not always come with supplementary voice such that they have to rely on asking other people. considering that an entry point is a meeting point for several people using several vernacular languages, the visually impaired person will have to go an extra mile to find those who speak their local language. given the ever increasing undisputed importance of information, there is a need to ensure access for pwds (jaeger & bowman 1974). another infrastructural challenge is that there is only one entry point under the osbp system. the existence of only one osbp in the sadc region leads to discordances in the flow of people’s movement. the osbp system at chirundu ensures fast clearance for travellers (wto 2011). however, if these travellers and traffic are in transit, the fast clearance can culminate in problems at their next stop if the borders do not have the same clearing capacity. what it means is traffic will stay less time at chirundu only to accumulate and stay longer at, for instance, beitbridge. this is a challenge that has brought calls for the development of entry points in a given corridor to adopt similar and complementary repms (zimano & ruffin 2018). once traffic gets piled at one entry point, the operating halls become crowded. this is worsened by weak queue management at entry points like beitbridge (munyanyi 2015). this results in noisy environments unfriendly to people living with some disabilities. research has it that those individuals with hearing disabilities have difficulties communicating against noisy backgrounds (brennon & bally 2007). the prolonged stay waiting for clearance also leads to fatigue. this affects all road users but is worse for pwds as they will not be able to withstand prolonged strain on their bodies. directly related to the efficiency of the operations at the entry points is the state of the road networks leading to the border points. zimbabwe has a poor road network riddled by potholes and narrow sections. this makes travelling by road very uncomfortable for all and sundry. according to watermeyer (2006), most pwds fail to reach opportunities because of the absence of safe transport systems. the roads cause a lot of back pain to all travellers that anyone can imagine the severity to pwds. envisioned interventions for the removal of the hidden hindrances the stakeholders’ triad approach the challenges faced by pwds because of repms presented in the theory and literature findings section are merely an eye opener. the centrality of the problem is that it is ‘very hard to understand disability if one has neither experienced a disability nor been close to someone else who has a disability’ (jaeger & bowman 1974:12). the best method, envisioned herein, is to engage pwds, their kith and kin, and organisations working with them. there is a need to establish networking platforms and sector-based collaborations to ensure successful disability awareness and inclusion (ned & lorenzo 2016). these will take policy makers and researchers through their lived experiences giving a more comprehensive understanding of the problem beyond what this article can achieve. once that happens there is need for a strong political will. a lack of political cohesion is a key hindrance in that it is the political will that informs the country’s actions (peteris 2013). as such, the recommendations listed below will only materialise into tangible benefits if the missing voice of pwds is brought in together with the political will in a triangulated approach. the triangle, shown in figure 1, brings the work from academics, the voices of pwds and the policy makers together for the greater good of the whole society as hidden factors hindering the empowerment of pwds through cross-border entrepreneurship will be alleviated. figure 1: stakeholders’ triad in the removal of road entry point management systems hidden disablers. interventions for hidden disablers’ removal having brought out all the stakeholders’ place, a lot of initiatives will be proposed. in line with the barriers discussed in this article, the following interventions, summarised in table 3, can be adopted as a starting point. table 3: interventions to alleviate hidden disablers. as presented in table 3, there are various methods that can be used to rectify the challenges pwds facing raised in earlier sections. there is a need to upgrade and avail ict systems at all border points. this will bring in the gains from ict currently eroded by the absence of full automation. automated systems will go a long way in enabling pwds to use several online platforms to bridge any gaps in their interaction with various people at border points. the benefits that come with different weather conditions and times of the day to pwds can be resolved by having border points operating 24 h. this means those people who struggle with hot or cold weather conditions can capitalise on the times they see best fit their conditions rather than being restricted to travelling during the day. the need to continuously empower the people manning borders to adapt to emerging challenges cannot be overemphasised as more contemporary border efficiency management skills (bems) have a potential of alleviating most of the challenges raised. study limitations this study is confined to experiences at zimbabwean entry points. as such, experiences reported herein may be more pronounced or reduced because of other factors such as cultural and economic factors that are purely zimbabwean. for future researchers, the use of entry points from other countries to bring comparative experiences can be useful to bring more insights on how other countries’ systems are enabling or disabling pwds’ optimum participation in cross border entrepreneurship. conclusion this article has discussed hidden factors in border management systems affecting pwds in their quest to venture into cross-border entrepreneurship. this angle has, to this end, been timidly addressed as most organisations and legislation have concentrated on making things work for the majority of the populace. people with disabilities have been, to date, widely viewed as dependents. the assumption being that empowering the able-bodied inadvertently caters for pwds as the able would take care of pwds. however, evidence has shown that this has culminated in the social construction of exclusion that disempowers pwds. in this article, it has been argued that most pwds are not dependents; in fact, most have dependents under their care. it has also been shown that cross-border entrepreneurship by road is a source of livelihood in zimbabwe. this situated repms infrastructure and procedures in the debate showing how they can be a source of empowerment if properly constructed and implemented. on the other hand, this article has shown how the repms can result in some hidden hindrances impeding the active and productive participation of pwds in the field of cross-border entrepreneurship if improperly constructed, maintained and managed. what is required is to draw policy makers’ and pwds’ attention to these pertinent issues in repms. it is the duty of all to see to it that pwds get out of the ‘dependents’ brackets and go out to see how they can fit into the emerging empowerment frameworks. in so doing, they will add their voices based on practical experiences to issues raised in this article on the best way the existing repms can be dealt with to eliminate the hidden challenges. the policy makers must embrace these and more ideas to ensure that the total empowerment of pwds and their participation in society becomes a reality. the creation of a working triad for key stakeholders will help bring together the lived experiences, the research findings and analysis, and the political will necessary for the comprehensive addressing of challenges in repms. governments must take it upon themselves to deliberately speed up initiatives such as harmonisation, streamlining of procedures, implementation of bems, provision of friendly holding halls at entry points, utilisation of ict products and rehabilitation of road networks amongst other things for the good of all and the direct empowerment of pwds. these initiatives directly remove challenges linked to communication, mobility, strenuous travelling conditions and extreme weather conditions’ impact on skin, and travellers’ security amongst other things which emerge as imperceptible obstructions because of procedural and infrastructural commissions or omissions. above all, the earlier all the stakeholders take these issues seriously, the earlier the arguments presented herein will make sense to all and the earlier their issues will be prioritised in mainstream policy considerations. acknowledgements competing interests the authors have declared that no competing interests exist. authors’ contributions f.r.z. researched entry points at the doctoral level under f.r.’s supervision. this brought insights into operations of road entry point management systems. a.c. provided key insights into the experiences of pwd from lived experiences. k.m., an educationist, provided key insights into the social construction theory. all authors then put equal contributions into data analysis, drafting and coming up with the full article. f.r.z. took care of the rest of the draft consolidation. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references andrews, t., 2012, 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accepted: 29 aug. 2024; published: 31 oct. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: obuntu bulamu is a ugandan intervention promoting inclusive education for children with disabilities. this culturally appropriate approach, based on the ubuntu philosophy, utilises peer-to-peer support activities for children, parents and teachers. objectives: to effectively measure the intervention’s impact on disability inclusion, the study aimed to select, adapt and test classroom observation instruments suitable for the ugandan context. method: three structured classroom observation tools were selected and piloted in 10 primary schools in wakiso district: the classroom observation checklist (coc), the teacher-pupil observation tool (t-pot) and the interaction engagement scale (ies). these tools were adapted to ensure cultural relevance and applicability within ugandan school settings. results: factors like class size, teaching methods, cultural relevance, language and ease of use influenced the suitability of the selected tool. the coc emerged as a more effective tool with a strong internal consistency (cronbach’s alpha of 0.80) for capturing inclusiveness and peer-to-peer support in the classroom compared to the t-pot and ies. conclusion: the study findings emphasise the significance of adapting and testing tools in specific cultural contexts and low-income country settings and considering culturally contextual factors like class size, teaching methods, language complexity and ease of use when measuring disability inclusion in primary schools. contribution: the selection of a classroom observation tool for the obuntu bulamu randomised control trial contributed to african disability knowledge and practices designed on and for the continent. keywords: disability; adaptation; testing; classroom observations; tools; inclusive education; peer support; primary schools; uganda. introduction inclusive education is a cornerstone of global development (unicef 2017), especially within the united nations’ sustainable development agenda, which emphasises the significance of removing barriers to learning and creating an environment where every child can participate and thrive (united nations 2015). this inclusivity becomes particularly crucial in low-income countries (lic) where children with disabilities often face exclusion or segregation from mainstream educational environments (donohue & bornman 2018; montenegro & valbuena 2009). uganda has taken steps towards inclusive education as a proactive lic, particularly through initiatives such as universal primary education (upe) and the disability act (ministry of education and sports 2019). despite these efforts, the effective measurement and implementation of inclusive practices, especially in large classroom settings common to lics, remain challenging (donohue & bornman 2018). this article describes the selection, adaptation and testing of classroom observation instruments within the ‘obuntu bulamu’ study in wakiso district, central uganda, specifically the classroom observation checklist (coc), teacher-pupil observation tool (t-pot) and interaction engagement scale (ies). tools were selected, adapted and tested to provide the study with culturally sensitive and effective means of measuring disability inclusion in primary schools. through systematic observations, this research aims to offer insights into the selection, adaptation and testing of tools that could guide inclusive practices tailored to lic like uganda. background inclusive education the united nations convention on the rights of persons with disabilities (crpd) articulates disability as a long-term physical, mental and intellectual impairment that limits one’s functioning, full and equal participation (united nations general assembly 2006). the united nations defines inclusive education as providing equal access to quality education for all children, regardless of their background, aptitude or special needs (unicef 2017). the right to inclusive education is highlighted by the convention on the rights of persons with disabilities (united nations general assembly 2006). goal 4 of the united nations’ sustainable development agenda is to guarantee access to quality, lifelong education for all (united nations 2019). inclusive education is precious because of its promotion of mutual growth and learning among students from different backgrounds (unicef 2020); however, in lic, many children with disabilities do not go to school and are faced with various barriers, poor access and a lack of adequate facilities (world health organization and united nations children’s fund 2023). while several african countries are on board to improve inclusion and have signed the crpd, the implementation of policies is still low (mendoza & heymann 2024; oyaro 2015). the 2024 progress report shows a decline in access and inclusion in education for all, because of a lack of resources and an imbalance pupil-teacher ratio (sachs, lafortune & fuller 2024). a systematic review exploring inclusive education interventions (mendoza & heymann 2024) only found 31 studies in lics, highlighting the need for more culturally appropriate interventions to boast inclusive education. uganda, hailed as one of the most engaged lics in adopting inclusive education (abimanyi-ochom & mannan 2014), started with the introduction of universal primary education (upe) and later universal secondary education (use) (ministry of education and sports 2019). with the introduction of upe, the number of children with disability enrolling in school increased (kan & klasen 2021; ministry of education and sports 2017). however, this surge in numbers did come with challenges (kan & klasen 2021). in a qualitative study to understand the implementation of upe schools, kyambadde and khumalo (2022) found misappropriation of funds, low stakeholder involvement and other factors hindering the success of this programme. children with disabilities are more affected and less included, even with such programmes, as parents are still tasked with payments and yet many are from very poor backgrounds (lamichhane & tsujimoto 2023). collaborative approaches with government organisations, other organisations and stakeholders like parents and community members are critical for inclusive education implementation (mendoza & heymann 2024). a study conducted in finland and south africa (engelbrecht et al. 2017) found that inclusive education cannot be implemented in the same manner across different countries because of contextual differences. in high-income countries (hic), the classrooms are relatively small, with 25–30 students per class (cameron 2014), while the majority of schools in lics face challenges with implementation because of large class sizes, poor disability attitudes, lack of collaborative approaches with parents and rigid teaching strategies among others (mitchell & sutherland 2020). inclusive education methods vary from school to school and might include setting targets for learners, one-on-one support and provision of support (schuelka & johnstone 2012). the strategy of children working together in regular classes (schuelka & johnstone 2012) and working in pairs or small groups (mitchell 2017) as ‘peers’ has been highlighted as an important contributor to inclusive education (banda, hart & liu-gitz 2010; wang et al. 2015). a study of a peer-mediated intervention among children on the autism spectrum determined that when children received and provided support, they benefitted from peer-to-peer relationships (carter et al. 2017). the approach also allows teachers to support large classrooms, as peers can support each other during play and other activities (mccurdy 2014). peer-to-peer support is a promising inclusion method for lics because of the higher teacher-pupil ratio and limited access to resources and teaching materials (ainscow & miles 2008; bannink mbazzi et al. 2020). ‘obuntu bulamu’ – the conceptual framework this classroom observation study was nested within the obuntu bulamu peer-to-peer support project, an african research study to improve the inclusion and participation of children with disabilities through an intervention rooted in the ubuntu philosophy (bannink mbazzi et al. 2020; nimusiima et al. 2024). ‘obuntu bulamu’ is the luganda word for ubuntu, used in central uganda, which describes the philosophy of humanity and reciprocity (murove 2012; owusu-ansah & mji 2013). the obuntu bulamu intervention (bannink mbazzi et al. 2020) was designed by children with disabilities, their peers, parents, teachers, community leaders, academics, and health and rehabilitation workers. after the co-creative development, the intervention was pilot-tested for feasibility over two academic years, in which educators, parents and students participated in a series of training and support sessions designed to improve the participation and inclusion of children with disabilities in school (bannink mbazzi et al. 2020). the intervention aims to enhance social responsibility by using culturally appropriate training and support methods and local resources (bannink mbazzi et al. 2020). it is expected to lead to better education access, retention and outcomes, inclusive interactions in schools, greater participation in daily home activities, improved community attitudes and involvement and active participation of the children and their families in research ultimately enhancing their quality of life. this is a significant and central element in the african disability discourse (berghs 2017; mutanga 2023) which aligns with the sustainable development goal (sdg) agenda to promote inclusion and disability discourse. measuring inclusive education in classroom settings compared to self-report ratings, classroom observations have been identified as a more reliable indicator of peer and teacher interactions and inclusive practices in classrooms in hic (hora & ferrare 2013; martin et al. 2010; ofsted 2018). several classroom observation instruments have been created and deployed for use in hics (martin et al. 2010). the inclusive classroom profile (soukakou, evangelou & holbrooke 2018), the t-pot (martin et al. 2010) and the stallings classroom observation systems (stallings, knight & markham 2014) are just a few examples. inclusive education studies measuring interaction and classroom inclusion in sub-saharan africa have primarily focussed on teachers and parents’ perceptions with data collected through surveys and interviews (carew et al. 2018; engelbrecht et al. 2017; richards & farrell 2012; wong et al. 2015). for instance, a study on the barriers to inclusion in kenya and uganda found that parent and community attitudes, large class sizes, limited teacher resources and inadequate training are significant obstacles to inclusive education (donohue & bornman 2018; ngwaru 2015). however, few studies have systematically observed classroom interactions (i.e. peer and teacher-pupil interactions) to determine the inclusiveness of educational practices (blatchford 2003). this study addresses this gap by selecting, adapting and testing tools that are culturally relevant and feasible to use in ugandan primary schools. in classrooms in lics, barriers such as large class sizes, limited resources and insufficient teacher training often limit the effectiveness of inclusive education practices (donohue & bornman 2018; okkolin, lehtomäki & bhalalusesa 2010). for example, some studies have shown that students with disabilities receive less attention and have fewer interactions with their teachers and peers than their peers without disabilities (ngwaru 2015; okkolin et al. 2010). studies have found evidence that teachers often lack the skills or knowledge to manage or integrate children with disabilities into their classes (mitchell & sutherland 2020), leaving them excluded from mainstream classrooms. a few studies have collected data through classroom observations in sub-saharan africa (filmer, molina & stacy 2015; salzano and labate, 2016). the classroom observations used noted components from distinctive survey data sets (filmer et al. 2015), classroom-based assessments (salzano and labate, 2016), free flow and controlled interviews and taking of notes (engelbrecht et al. 2015). engelbrecht et al. (2015) used classroom observations to document the happenings of a typical school day and found that using separate classrooms for children with disabilities only enforced stereotypes and did not help the students feel included or enhance peer-to-peer support. observing interaction between peers, children and teachers is feasible using available classroom observation tools (martin et al. 2010). these measures help to understand the extent of inclusion, and whether the child with disability is included and integrated into the classroom (singal 2008). adaptations are required to use the same tools in the lic, as classrooms vary from 60 to 100 students per teacher and have a different set-up and availability of materials compared to most schools in the hic (kristensen, omagor-loican & onen 2003). understanding and applying methods and practices rooted in our own cultural settings is crucial for the development and transfer of knowledge (mkabela 2005; mutanga 2023). there is limited research on using standardised classroom observation tools (coc) as educational evaluation measures in uganda. to the best of our knowledge, only the coc has been used in a pilot study conducted in uganda (bannink, idro and van hove, 2016) and in research conducted in schools within zambia and tanzania (miles 2011). we did not find any published research on the use of other classroom observation tools in sub-saharan africa. systematic observation framework this article describes the testing of classroom observation tools used to measure disability inclusion within the ‘obuntu bulamu’ peer-to-peer support intervention study in wakiso district, central uganda. we used the systematic observations framework (mccall 1984) which provides a foundation for designing, conducting and interpreting observations (van der mars, timken & mcnamee 2018). this framework aids in identifying or developing observation tools that are both valid and reliable, enhancing the accuracy of the collected data. in the context of our study on disability inclusion in ugandan primary schools, the systematic observation theoretical framework informed a structured and standardised approach to observing and collecting data on classroom behaviours. additionally, the framework enabled establishing clear criteria for selecting observation tools, aligned with research objectives and the specific needs, in our case studying peer-to-peer support and inclusion in ugandan classrooms. the framework ensured that the selected tools were applied consistently across different observations and observers, thus enhancing the reliability and comparability of the data collected. research methods and design study design the ‘obuntu bulamu’ peer-to-peer support intervention followed a mixed-method afrocentric study design conducted in 10 schools in the wakiso district in uganda. this study utilised a combination of culturally adapted ‘international standards and tools’ which align with the challenge of conducting research from an indigenous perspective (chilisa 2017). the children observed in this study were part of the feasibility study that tested the ‘obuntu bulamu’ intervention in 10 elementary schools in wakiso, central uganda between 2017 and 2019 which included a total of 64 parents (33 parents of children with disabilities and 31 parents of the peers). utilising a stratified random sampling approach, five private and five public schools were selected, with a focus on geographic distribution – two private and three public schools in semi-urban areas, while the rest (five) were in urban areas. study population this study encompassed 80 classroom observations, tracking 32 children with disabilities (14 boys and 18 girls) and their peers across baseline, midline and end-line assessments. two children with disabilities could not be observed on several occasions because of absenteeism. participants comprised 32 children with disabilities, aged 8–14, selected through purposive sampling to ensure diversity in disability type, gender, age and socioeconomic status. each child with a disability identified a peer for peer-to-peer support, resulting in a cohort of 64 participants (32 children with disabilities and 32 peers), each pair accompanied by at least one parent and one educator. teachers and heads of schools supported the research team in screening students in their schools with disabilities for eligibility. the ugandan disability definition of the disability act (in line with the crpd) was used to define impairment (uganda parliament 2019). schools informed parents of children in the school about the programme and screening process. the research team selected index children taking into account the different demographic attributes mentioned in table 1. after screening and pre-selection through the school lists, parents were asked to consent. after obtaining consent from parents and, assent from children with disabilities, we proceeded with screening their peers. the children were asked to identify their peers, choosing a friend in class that supported them. teachers supported in pre-screening peers, especially for the children with severe disabilities by selecting peers they had observed being supportive and friendly to the child with disabilities during class and break time. when the peers expressed their interest in the child and intervention, their parents were also contacted to discuss the study information and obtain consent. where possible children with disabilities and their peers assented. table 1: socio-demographic and class data characteristics of study participants (children and parents). table 1 describes the social demographic, impairment and education characteristics of the children and parents. the average age of the children with disabilities was 10 years, while their peers averaged 9 years. the majority of the children could walk independently while 18.5% used assistive devices. more than half of the participants (59.4%) were in primary years 1–3, with 2/3 of the children having a neurodevelopmental (autism spectrum disorder, down syndrome and intellectual disability) or neurological (spina bifida and hydrocephalus) impairment. classroom observation tools based on a scoping literature review including the words ‘classroom observation scale (or tool or list)’ and ‘disability’ (or impairment or special needs) in google scholar in 2018, the following classroom observation tools were found and reviewed: the stallings classroom observation systems (stallings et al. 2014), the classroom observation tool (van tassel-baska et al. 2003), the coc (collins 2012), the t-pot (martin et al. 2010) and the interaction engagement scale (hunt et al. 1996). based on initial reviews by two of the researchers, three checklists were selected as most appropriate for our setting and study purpose: the coc, t-pot and ies. selection was based on the usage of the tools with children with disabilities, cultural appropriateness of observation items to our setting, number of observers required and duration of observations for feasibility (maximum 2 observers and not more than 1 hour per observation). the classroom observation checklist (coc) is a tool designed to assess classroom interactions based on the principles of inclusive education. it is designed to assess various aspects of a child’s interaction and engagement in an inclusive classroom setting. the checklist (collins 2012) is a resource from the index of inclusion (booth et al. 2002). the index of inclusion is a comprehensive resource developed for improving inclusion, equity and participation in schools (booth et al. 2002) and allows users to tailor the resources to their contexts for enhancing inclusion (engelbrecht, oswald & forlin 2006). the index has multiple features to it and one of the significant features is questionnaires. the checklist is a practical tool that emerged from the index of inclusion and helps educators observe and reflect on the inclusive practices of a classroom environment (collins 2012). it was piloted in uganda in a study exploring the accessibility and inclusion of children with spina bifida in primary schools (bannink, idro and van hove, 2016). this checklist evaluates inclusive practices involving the index child, peers and teachers. the index of inclusion has been used in several studies (duke 2009) and is well-documented for the promotion of inclusive education (hick* 2005). the checklist comprises two items that focus on various aspects of inclusion, such as interaction quality, teaching strategies and classroom dynamics. the observation period for each session, typically core subjects like english, mathematics or social science, lasts 20 min. observers rate each item as ‘agree’, ‘agree to some extent’ or ‘disagree’, and not observed with space provided for additional notes to contextualise each observation. the interaction and engagement scale (ies), developed by hunt et al. (1996) and widely used in the united states of america, is designed to assess classroom interaction and engagement. observations are conducted in 10-min intervals, segmented into 20 intervals. during each segment, the observer documents the index child’s interaction type, participant involvement and interaction nature (e.g. request with a teacher). the scale also captures interaction quality (positive, neutral and negative), engagement levels (active, passive and not engaged) and grouping patterns (individual or group), providing a comprehensive view of classroom dynamics. the teacher-pupil observation tool (t-pot) measures behaviours and interactions between teachers and pupils within the classroom. the t-pot was integrated from other studies and developed to measure teachers’ interaction, index child and peers (martin et al. 2010) and has been refined and adapted in several studies (martin-forbes, 2009; gallucci, 2014). it has been used in various regions, including gwynedd, north wales and ireland (martin et al. 2010). it was designed to systematically record and assess both the child’s and teacher’s behaviours within a classroom setting. the t-pot is organised into two main sections: child–child and teacher–child interactions and behaviours. the tool includes specific behaviour indices, accompanying notes for detailed observations and an observation manual for the coder or observer to use as a guide. the tool uses a combination of tallies and notes to capture the frequency and context of the observed behaviours. in the child behaviour section of the t-pot, the observer systematically records instances of aggression towards peers, noting whether the aggression was verbal, physical, destructive or disruptive. if no aggression is observed, the observer marks this as ‘not observed’. the section also includes a component for tracking peer interactions initiated by the child or directed towards the child, such as ‘i-p’ (initiation by peer), ‘p-i’ (peer initiation) or ‘c-i’ (child initiation). the observer further documents the child’s response to these interactions, categorising them as positive, negative or neutral. additionally, the observer notes the percentage of time the child is off-task, such as ‘on task, 80%’, indicating the child’s level of focus during the observation period. the teacher behaviour section of the t-pot is focussed on capturing the teacher’s responses to classroom dynamics. the observer records instances where the teacher ignores specific behaviours, particularly when the child is aggressive towards the teacher. additionally, the observer tallies each time the teacher asks a question and tracks the child’s compliance or non-compliance with these questions. detailed notes can be added to provide context on the child’s responses or attempts at compliance. this section also monitors the teacher’s use of indirect and direct commands, documenting whether the child had the opportunity to comply (‘no opp’ for no opportunity) and whether compliance or non-compliance occurred. tallies are used for each instance, and notes provide further insights into these interactions. the section also includes space to document the use of time-out warnings, recording whether the child complied, did not comply or had no opportunity to comply. a background information sheet was designed by the research team to capture relevant contextual details that may influence the observations such as subject, lesson duration and class size. the observation documents were printed separating assessments of teacher and child behaviours with dedicated note sections. the observation period for all observations was set to 20 min per child. data collection two ugandan graduate research assistants, specialised in clinical and educational psychology with prior experience in ugandan classroom observations, conducted the data collection and classroom assessments. the two observers who had met the teachers, parents and children during the consenting process, were introduced as visitors and often sat in the front or back of the classroom depending on the layout and arrangement of the classroom and sitting arrangement of the children to be observed. twenty minutes were used for the independent observation of the index child, peer, teacher and general classroom interactions. each index child and peer was observed using the three selected tools separately. the three tools were tested in 10 schools. the research team documented various classroom parameters such as teaching strategies, class size, subjects taught, seating arrangements and classroom divisions into pairs or groups. each child, along with a peer, was observed thrice: at initial and subsequent years of testing the obuntu bulamu peer-to-peer support intervention. at different stages – baseline (pre-intervention), midline (during intervention) and end line (post-intervention) – the observers evaluated the usability, relevance and applicability of three assessment tools: the coc, the interaction and engagement scale and t-pot. during baseline, the observers focussed on using the tools in their original format and observing the classroom setting, interactions within the classrooms and how well the items of the tools were observable and reflective of the classroom context. all observations began with the identification of the index child, their peer and observer initials and noting other critical background information such as the class, number of children in the class and subject being taught, methods used during the observation, seating arrangement, specific data and time of the observation, plus the duration of the observation. the coc, t-pot and ies were manually completed for each child with a disability and their peer. when using the coc, the observers evaluated various statements related to the inclusive practices within the classroom assessing the child’s participation, social interactions and the teachers’ support, the child’s engagement and behaviour and the overall classroom environment. each statement was marked as either ‘agree, agree to some extent, disagree, not observable and not applicable’. during the ies use, observers conducted observations in 15 s intervals as per ies guidelines. during each interval, they captured the first communicative interaction involving the index child, noting the interaction’s function, quality and engagement level. during the t-pot use, observers recorded observed instances with tallies; for example, if a teacher asked a question, this would be tallied and the child’s compliance would also be tallied. notes sections were provided for each instance where the observers would provide further insights into these interactions. all observation data were entered into open data kit which was used as the data management tool for the study. the study team was trained on data entry and quality control using this tool. subsequently, tablet computers facilitated the transfer of this information into the open data kit (odk) system, ensuring secure storage in locked computers and cabinets throughout and after the data collection phase. data analysis data cleaning and analysis were performed using stata post-entry. t-tests were used to compare the observational data across different phases of the study to assess the effectiveness of each tool (coc, ies and t-pot) in capturing changes because of the intervention. demographic and impairment information were analysed using frequency counts to gain insights into participant characteristics. cronbach’s alpha coefficient was calculated to measure the internal consistency (reliability) of each observation tool and content validity to identify if the items in each tool adequately covered the observed behaviours in the classroom contexts. to ensure reliability, the ies includes procedures for calculating inter-observer agreements. differences between observers’ recordings were noted, tallied and analysed to determine the level of agreement. the t-pot tally counts were recorded for each behaviour and frequency run. ethical considerations ethical clearance to conduct this study was obtained from the uganda virus research institute, research ethics committee (no. gc/127/18/02/633), the uganda national council of science and technology (no. ss 4557) and the ethics committee of the faculty of psychology and educational sciences of ghent university (no. amendment 2017/06/femke bannink mbazzi). all adults gave written informed consent to participate in the study. parents of children and peers who were observed had consented using written consent following ethical approval of the ethics committee. where possible, children had assented. heads of schools and teachers too orally consented to participate in the study and be observed in their classrooms. overall permission to conduct the research was obtained from the uganda national council for science and technology (ss 4557). all procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 helsinki declaration and its later amendments or comparable ethical standards. results adaptations of the tools using the systematic observations’ theoretical framework, which emphasises the importance of designing, conducting and interpreting observations in a structured and reliable manner, the research team discussed baseline findings and proposed changes to ensure the tools reflected the classroom setting, teaching strategies, cultural relevance, language and ease to use. the baseline phase allowed the observers to identify items in the tools that were either not easy to capture or did not apply to the classroom contexts. observations and suggested changes were discussed with the research team and in consultation with teacher representatives in the study team, the following changes were made. in the coc, the team replaced the following items: item 5, ‘the display of child’s work’ was replaced with ‘praising of achievement by teacher’ as children’s work is usually not displayed in ugandan classrooms; item 17 ‘understanding homework’ was replaced by the ‘teacher explaining the homework to the child’ as we could not measure understanding during observations; and item 19, ‘family’s impression of the school’ was replaced with an overall item of ‘classroom being inclusive of children with disabilities’ as the families’ impressions could not be observed. the ies had a structure that could be followed for each individual child and their peer; therefore, there were no changes made to the ies and the original items were used in all observations. in adapting the t-pot for this study context, several key modifications were made for enhanced measurability and relevance. the tool was refined to separately assess teacher and child behaviours, with dedicated note sections for each component, allowing focussed observations. this included recording the observed interactions on a separate page. initially, the original form had the teacher and child behaviours on one page. we also extended the observation period to 20 min using a single sheet unlike the original t-pot, which utilised the 5-min observation intervals per sheet. during the baseline observations, one sheet was used every 5 min which was not suitable in the context as 5 min could go by without observing any interaction in the entire class, as large parts of the lessons in our setting consist of teachers instructing and children looking at the teacher or copying notes from the blackboard. in addition, observers noted that the shorter intervals in the original tool often led to a heightened focus on timekeeping and recording, detracting from the overall classroom observation. these adaptations ensured that the tools were culturally sensitive, feasible, easy to use and time efficient, adhering to the principles of systematic observation. evaluation criteria for all classrooms, the number of children ranged from 45 to 100 per class; private schools had smaller numbers with a minimum of 45 children per class while government schools had up to 100 children per class. lessons were dominated by the teacher talking while the children listened or wrote in their books, copying notes from the board. teachers in the lower primary classes engaged children in chorus songs, making things like beads or art. interactions in the classroom were minimal; children gave chorus answers, repeating after the teachers or answering when called upon. from these observations, the observers developed evaluation criteria to assess the suitability of the tools in discussion with the research team and teacher representatives. five key criteria were identified: classroom setting, teaching strategies, cultural relevance, language and structure, and ease of use (table 2). table 2: evaluation criteria of the classroom observation checklist, interaction and engagement scale and the teacher-pupil observation tool. evaluation findings classroom setting observations spanned 10 schools in the wakiso district, evenly split between government and private institutions. each class typically had 1 class teacher, teaching assistants were absent and class sizes varied significantly. despite challenging pupil-teacher ratios exceeding 30:1 across all classes, it was easier to check off all the items on the coc as the items were easier to note in a large classroom. the coc effectively captured critical classroom interactions, such as group work. in contrast, the t-pot and ies encountered limitations because of the nature of the items requiring actual interaction of the child with the teacher or peer within a short observational period. items on the t-pot and ies required a check for different kinds of interactions between the child with a disability, their peer or classmates and/or teachers. this spanned from compliance, responding to any interaction, initiation of interaction and task behaviour. however, the nature of the classroom and the span of the observation limited the observation of these interactions and when they did occur, were few. teaching strategies table 3 outlines prevalent teaching strategies across observed schools. with a teacher-centric approach being predominant, teaching strategies were uniform throughout the schools observed. the lessons mainly involved the teacher talking and children listening, with interactions occurring almost when the teacher asked questions or assigned a task to the child being observed. the teaching strategies observed across the 10 schools involved children making something, coming to the front, writing (notes from the blackboard), answering questions and singing. most of the time, children were writing notes off the board in government schools and answering questions in private schools. children even when involved in what would have been an interactive task like making something (such as beads) were expected to work in silence or engage in chorus responses. the coc adeptly captured even brief interactions, while the t-pot and ies exhibited limitations, particularly in registering infrequent peer interactions or collaborative tasks. table 3: teaching strategies observed by school type. cultural relevance cultural relevance was assessed based on how well the tools’ items applied to ugandan classrooms, and their observability and usability by ugandan researchers. items on the coc were replaced and the t-pot had an information sheet capturing details of the classroom added to make it more understandable and appropriate for the cultural setting and educational background of the observers. the coc tool demonstrated effectiveness in capturing items related to inclusion, as a likert scale checklist, the observers could note the item and had a section to add notes for a deeper comprehension. on the t-pot and ies, the observers struggled to capture cultural nuances and differences in teaching practices within the observed classrooms as these were focussed on time-sensitive incidences of behaviours. they also made the observers feel rushed and limited in their ability to observe the children well because of the emphasis on time rather than the interaction over time. language and structure the language and structure of the tools played a significant role in assessing their suitability. for example, the ies used function letters such as i, a, i & a, r, c and a as interaction measures. these were not mainly intuitive, even for experienced observers, who often had to refer back to the definitions document. mastery of the ies required extensive use to apply it smoothly. similarly, the t-pot tool had a comparable structure, demanding a high level of familiarity for effective use. in contrast, the coc tool featured a straightforward checklist with ‘agree or disagree’ questions, making it much easier to follow and complete in a timely manner. ease of use ease of use was considered in terms of training requirements, observer independence and time efficiency. the coc tool emerged as user-friendly, requiring basic training and enabling reliable observational outcomes within a short time frame. in contrast, the t-pot and ies demanded extensive training, multiple observers, and more time for effective administration, especially in larger classrooms, posing challenges to its applicability in low-resource settings. in summary, the evaluation criteria and observations highlighted the coc as the most effective in capturing diverse aspects of classroom dynamics in the ugandan context, emphasising its user-friendly nature and adaptability to the setting. classroom observation checklist reliability was confirmed through a robust cronbach’s alpha coefficient of 0.80, indicating strong internal consistency, while the t-pot and ies scores could not be calculated because of limited captured interactions, resulting from low interaction frequencies within observed settings. discussion in this study, the coc (collins 2012), t-pot (martin et al. 2010) and ies (hunt et al. 1996) were adopted and tested in 10 primary schools in central uganda, using the systematic observation theoretical framework to select a classroom observation tool to measure inclusion of children with disabilities. based on the evaluation criteria of classroom setting, teaching strategies, cultural relevance, language and ease of use, the coc emerged as the more effective tool for capturing inclusiveness and peer-to-peer support in the classroom. it demonstrated strong internal consistency and was sensitive to the cultural context and classroom dynamics of the ugandan setting. the coc was user-friendly and successfully captured the changes in interactions and participation, and was also able to measure peer-to-peer support, which is a key component of the obuntu bulamu project that this study was conducted within. in contrast, the t-pot and ies struggled to capture nuanced interactions making them less suitable for the ugandan classroom context, particularly considering factors like classroom size and teacher-pupil ratio. the t-pot’s restricted observation windows and focus on teacher–child interactions hindered its ability to effectively capture peer-to-peer support. the ies did not capture cultural nuances and variations in teaching practices within the ugandan context. much as the t-pot and ies were good at capturing active interactions, these were limited and hence reduced the meaningfulness of the findings beyond the observation that there was limited interaction in pairs. while the coc was considered most appropriate, it also had some limitations. specifically, the coc lacked comprehensive capturing of interaction frequencies and levels within classroom settings, such as the duration and extent of group divisions. the tool did provide comment sections for individual items, allowing observers to note specific occurrences and nuances during observations. our study had a small sample size, which limits the generalisability of the findings. some of the observations did not have two observers but one because of logistical challenges. this might have increased bias and hindered inter-rater reliability that was required for the t-pot and ies. to minimise this risk, we removed outliers from the analysis and guided the observers through feedback and supervision meetings during the study. several adaptations and/or translations have been made on standardised tools, measures and devices from hic to suit the lic’s settings and increase access to less specialised personnel (abessa et al. 2016; montenegro & valbuena 2009). tool adaptations allow for proper assessment of the appropriate cultural setting (gladstone et al. 2010) and can make moves for tailoring interventions to improve inclusion as in our case. the ‘obuntu bulamu’ study incorporated classroom observations to gauge the participation levels of children with disabilities in mainstream classrooms and measure the impact of the intervention. selecting a suitable tool that is culturally relevant contributes to the african discourse on promoting knowledge and exploration of african disability and inclusion. owusu-ansah and mji (2013) asserted that it is crucial for african knowledge and methods to be implemented to achieve more meaningful data. the tools from the hic are a good resource but directly using them for settings like uganda may not always be applicable, as shown in the testing of the t-pot and ies in this study. with our study, we aimed to not only find an appropriate tool for the ‘obuntu bulamu’ study but also contribute to the translation, adaptation and evaluation of tools to create relevance and contextualise methods from hic to suit our setting (chilisa et al. 2016). because of limited interactions observed between teachers and students directly, the ies and t-pot could not adequately provide data on the participation of the children in the class. within the coc, we could observe and note changes in participation and involvement over time. as noted by singal (2008), a child included does not always necessarily translate to a child integrated, hence the need for repeated observations with a tool sensitive enough to observe a shift from a child merely being present in the classroom to a child fully becoming and belonging, which is the ultimate aim of the obuntu bulamu project. martin et al. (2010) have mentioned that classroom observation tools are developed to help address limitations and add to the existing structures. in this study, it was seen that some changes had to be made to some of the existing tools to be able to capture accurate interactions in the study setting. we could in reverse argue that teaching practices need to change in order for us to capture more interactions. however, here too we need to take into account the importance of group response (e.g. chorus) and social and cultural practices which are focussed on the class as a whole rather than the individual child. this is not only because of the teacher-pupil ratio but also to cultural and social values of joint learning and interactions between adults and children and children and their peers. hence, considering these values in selecting and adapting an observation instrument is key. recommendations there is a great need for the development and adaptation of culturally relevant and context-specific tools to measure inclusive education in lic (nishimura et al. 2009). development and adaptation of tools can help monitor and support the implementation of inclusive education. with this study, we contributed to testing and selecting a culturally appropriate and context-relevant tool to measure the inclusion of children with disabilities and their peers in the classroom. we recommend researchers test the reliability of the tool in other school settings and further adapt, design and test tools to make meaningful contributions to measuring inclusion in context. conclusion the study aimed to address the lack of reliable and culturally sensitive tools to assess inclusive practices in lic like uganda. of the adapted and tested tools, the coc proved to be the most suitable tool for the ugandan setting, capturing inclusive practices and peer-to-peer support effectively. the findings of this study highlight the importance of considering factors such as class size, teaching methodologies, cultural relevance, linguistic complexity, and ease of use in selecting and adapting classroom observation tools. by selecting and adapting observation tools that accurately measure disability inclusion relevant to the context, policymakers and educators can gain insights into the effectiveness of inclusive practices and make informed decisions to improve the quality of education for children with disabilities and measure progress towards the united nations’ goal of ensuring access to quality education for all. acknowledgements the authors would like to thank all the participants in the evidence-based inclusive education study. they also thank the staff of medical research council (mrc), uganda virus research institute (uvri) and london school of hygiene and tropical medicine (lshtm) uganda research unit for their support, specifically harriet nambejja and ruth nalugya for their participation in data collection. they would like to thank prof. geert van hove from ghent university for his guidance throughout the project. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions e.s.k. and f.b.m. contributed to the conceptualisation of the study. e.s.k., c.n. and f.b.m. were responsible for the methodology. e.s.k., f.b.m. and j.s. handled the validation process. c.n. and e.k. conducted the formal analysis. e.s.k. was responsible for the investigation. e.s.k., c.n. and f.b.m. provided the necessary resources. c.n. and f.b.m. curated the data. e.s.k. prepared the original draft of the article. j.s. and f.b.m. reviewed and edited the article. j.s. and f.b.m. supervised the project. f.b.m. handled the project administration and acquired the funding. all authors have read and agreed to the published version of the article. funding information this study was funded by the vlir-uos university development cooperation through ghent university 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on children with developmental disabilities: from the margins to the mainstream, world health organization, geneva. book review review of the book: handicap et technologie en contextes africains [disability and technology in african contexts] by patrick devlieger, jori de coster, lambert nieme and léon mbadu-khonde book title: handicap et technologie en contextes africains [disability and technology in african contexts] authors: patrick devlieger jori de coster lambert nieme & léon mbadu-khonde isbn: 13: 978-2343095561; 10: 2343095566 publisher editions l’harmattan (september 15, 2016) *$31.92 *book price at time of review review title: review of the book: handicap et technologie en contextes africains [disability and technology in african contexts] by patrick devlieger, jori de coster, lambert nieme and léon mbadu-khonde reviewer: muriel mac-seing1 affiliation: 1school of public health, université de montréal, montreal, quebec, canada corresponding author: muriel mac-seing, muriel.k.f.mac-seing@umontreal.ca how to cite this article: mac-seing, m., 2019, ‘review of the book: handicap et technologie en contextes africains [disability and technology in african contexts] by patrick devlieger, jori de coster, lambert nieme and léon mbadu-khonde’, african journal of disability 8(1), a635. https://doi.org/10.4102/ajod.v8i0.635 copyright notice: © 2019. the authors. licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in handicap et technologie en contextes africains [disability and technology in african contexts], devlieger, de coster, nieme, mbadu-khonde and colleagues aim at bringing together the intersectional scholarships and testimonies of disability and technology in the sub-saharan african context, and in particular in the cross-border congolese settings. the book is divided into three sections. the first section illustrates the daily experience of people with disabilities and technology from various countries, beyond the description and use of assistive devices. the second section deals with the institutional contexts within which people with disabilities are evolving in terms of access to and use of technology. the third section provides different types of analysis, ranging from the interconnected representation of disability and technology to the impacts of technology on the socio-economic and cultural life of people with disabilities and their entourage. throughout the chapters, written either in french or in english to promote the linguistic expression of the various authors and collaborators, the book takes us through a journey on how potentially disabling situations can be metamorphosed into an emancipatory experience in life. this, provided that the agency and capabilities of individuals with disabilities are optimised and that conducive environments for their full social participation are put in place. as such, technology is understood ‘as humans using their bodies in functional ways […] is expressed in body techniques’ (mauss 1966:20). technology can be extended as a simple wooden walking stick to move from one point to another, a transformed tricycle to also carry commercial goods for increased financial competitiveness, a specific shunt technique to improve the quality of life of people living with hydrocephalus, or learning technical tools for children with vision and hearing impairments to become independent citizens. for readers who are not familiar with disability-related literature, and who are inquisitive to learn more about how people with disabilities in various sub-saharan contexts navigate in challenging attitudinal and physical environments, this book is a nice introduction to disability and will help them acquire a new perspective on the importance of the creativity often deployed by people with disabilities and their family, and of accessibility for the disabled population to work and participate in social activities like anyone else. for readers who are already cognisant of the socio-economic realities and symbolic (e.g. related to religion) complexities faced by people with disabilities, this book will also help them learn more about the powerful role played by technology in the life of people with disabilities, and through the situated positionalities of scholars and practitioners from central and eastern africa, with a focus on french-speaking countries. furthermore, this book tells the extraordinary stories of ordinary people with disabilities, not in the classical biographical sense, but across personages and countries where common threads of lived discrimination, forced creativity, economic empowerment and social support are revealed and better apprehended. moreover, technology is also understood as enhancing the dignity of people with disabilities, and the expression of their identity through the transformational nature technology provides them. to be fully experienced, the dignity of people with disabilities needs to be exercised through the respect of their rights by both the government and civil society organisations. hence, the legal and institutional frameworks within which people with disabilities are evolving play a crucial role in promoting the existence of appropriate and accessible technology in africa and elsewhere. handicap et technologie en contextes africains [disability and technology in african contexts] provides us interesting perspectives and analyses, not only from researchers working on disability but also from field practitioners, clinicians, education experts and artists. it cuts across disciplines, languages and countries examining the same object of interest, that is, the intersection between disability and technology. this book contributes to the multidisciplinary and bilingual scholarship on disability by juxtaposing different linguistic, symbolic and cultural world views related to disability and technology. what i would have liked to read more is the gendered analysis of this intersection (moodley & graham 2015). for example, how differently (or not) is technology perceived and lived by women and men living with different types of impairments, and in various contexts of sub-saharan africa? i certainly look forward to reading more about the authors’ work and their further analysis of disability and technology in africa and other regions of the world. revue du livre « handicap et technologie en contextes africains [disability and technology in african contexts] » par patrick devlieger, jori de coster, lambert nieme and léon mbadu-khonde selon devlieger, de coster, nieme, mbadu-khonde et collègues, « handicap et technologie en contextes africains [disability and technology in african context] » a pour objectif de présenter les diverses intersections entre le handicap et la technologie, à travers différents écrits scientifiques et témoignages en afrique subsaharienne, et particulièrement dans le contexte transfrontalier des deux rives congolaises. le livre est divisé en trois sections. la première nous décrit l’utilisation de la technologie au sein de la vie quotidienne de personnes en situation de handicap dans divers pays, au-delà de la description et de l’utilisation des aides techniques. la seconde met de l’avant les contextes institutionnels dans lesquels celles-ci évoluent en termes d’accès et d’utilisation de la technologie. la troisième fournit différents types d’analyse des représentations imbriquées du handicap, de la technologie aux impacts de la technologie sur la vie socioéconomique et culturelle des personnes en situation de handicap et de leur entourage. tout au fil des chapitres écrits soit en français soit en anglais et ce, dans un souci de promouvoir l’expression linguistique des différents auteurs et collaborateurs et à l’instar d’un voyage, ce livre nous fait découvrir comment des situations potentiellement invalidantes peuvent être métamorphosées en expériences émancipatrices. pour ce faire, l’autonomisation et les habilités des personnes en situation de handicap ainsi que les environnements favorables à leur pleine participation sociale doivent être optimisés. en tant que telle, la technologie, comprise « comme des humains utilisant leur corps de manière fonctionnelle […] est exprimée par des techniques corporelles » (mauss 1966:20). la technologie peut ainsi être perçue par le biais d’une simple canne en bois permettant d’aller d’un endroit à un autre, d’un tricycle adapté pour transporter des biens commerciaux pour une compétitivité financière accrue, d’une technique de dérivation spécifique pour améliorer la qualité de vie des personnes atteintes d’hydrocéphalie, ou d’outils d’apprentissage destinés aux enfants ayant une incapacité visuelle ou auditive pour devenir des citoyens autonomes. ce livre est une belle introduction au handicap tant pour les lecteurs qui ne sont pas familiers avec la littérature sur le handicap que pour ceux qui sont avides d’apprendre davantage sur les différentes manières à travers lesquelles les personnes en situation de handicap naviguent dans le cadre d’environnements physiques et attitudinaux difficiles et ce, dans de divers contextes subsahariens d’afrique. il leur permettra d’acquérir de nouvelles perspectives sur l’importance de la créativité, souvent déployée par les personnes en situation de handicap et leurs familles, et de l’importance de l’accessibilité pour ces dernières afin de travailler et de participer aux activités sociales, sur un pied d’égalité avec toute autre personne. pour les lecteurs déjà conscients des réalités socioéconomiques et des complexités symboliques, par exemple, liées à la religion, auxquelles font face les personnes en situation de handicap, ce livre leur présentera un éclairage particulier sur le rôle crucial que la technologie joue dans la vie de ces dernières, et aussi à travers les divers positionnements qu’expriment les chercheurs et les praticiens de l’afrique centrale et de l’afrique est, en particulier des pays francophones. qui plus est, ce livre nous raconte les récits extraordinaires de personnes en situation de handicap ordinaires, non pas au sens classique de leurs parcours biographiques, mais selon un fil rouge liant les différents personnages vivant dans divers pays. cette approche nous permet de mieux saisir les discriminations vécues, la créativité nécessaire et affichée par les personnes en situation de handicap, leur empowerment économique et le soutien social qu’elles entretiennent. en outre, la technologie est aussi comprise comme un moyen d’améliorer la dignité des personnes en situation de handicap, et l’expression de leur dignité, grâce à la nature transformatrice que représente la technologie. pour être pleinement incarnée, la dignité des personnes en situation de handicap s’exerce à travers le respect de leurs droits, tant par les gouvernements que par les organisations de la société civile. les cadres juridiques et institutionnels au sein desquels elles évoluent jouent ainsi un rôle essentiel dans la promotion de l’existence de technologies appropriées et accessibles en afrique, et ailleurs. « handicap et technologie en contextes africains [disability and technology in african context] » nous offre des perspectives et des analyses intéressantes, non seulement de chercheurs œuvrant dans le domaine du handicap, mais aussi de praticiens du terrain, de cliniciens, d’experts en éducation, et même d’artistes. cet ouvrage multidisciplinaire, bilingue et interpays, examine le même objet d’intérêt, soit l’intersection entre le handicap et la technologie. il contribue à la recherche transdisciplinaire, en juxtaposant différentes visions du monde en ce qui a trait au handicap et à la technologie, qu’elles soient de nature linguistique, symbolique ou culturelle. en revanche, ce qui aurait été intéressant de lire est une analyse genrée de cette intersection (moodley & graham, 2015). par exemple, comment la technologie est-elle perçue différemment (ou pas) par les femmes et les hommes vivant avec différents types d’incapacités et ce, dans des contextes divers d’afrique subsaharienne? pour finir, c’est avec impatience qu’il nous tarde de lire les futurs ouvrages et analyses des auteurs autour du handicap et de la technologie en afrique et ailleurs dans le monde. references mauss, m., 1966, ‘les techniques du corps’, in sociologie et anthropologie, pp. 365–386, presse universitaire de france, paris. moodley, j. & graham, l., 2015, ‘the importance of intersectionality in disability and gender studies’, agenda 29(2), 24–33. https://doi.org/10.1080/10130950.2015.1041802 introduction prevalence of disability context the journey the process conclusion acknowledgements references about the author(s) gillian k. douglas centre for research and health systems, faculty of health sciences, university of kwazulu-natal, durban, south africa department of psychology, ngwelezana tertiary hospital, empangeni, south africa citation douglas, g.k., 2025, ‘“those most at risk are least likely to be counted”’, african journal of disability 14(0), a1702. https://doi.org/10.4102/ajod.v14i0.1702 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper ‘those most at risk are least likely to be counted’ gillian k. douglas received: 25 feb. 2025; accepted: 20 june 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction globally, the world health organization (who 2022) estimates that 1.3 billion individuals (16% of the world’s population) live with significant disability underscoring the need for health equity for persons with disability to be prioritised as a global health objective. of these 1.3 billion individuals, approximately 80% reside in lowand middle-income countries. in the south african context, a disproportionately high percentage of people with disabilities live in rural and remote areas (couper 2002). access to psychological services for individuals with disabilities in these regions is severely limited. the challenges faced by this population are consistent with those identified in the literature (couper 2002; morris et al. 2021; rall & swartz 2025; who 2022) and include: insufficient psychological staffing within the departments of health and of education, inadequately developed infrastructure in health facilities for counselling and assessment, a lack of validated assessment tools and research tailored to this context – particularly given the educational challenges faced by many rural children with disabilities. furthermore, there is a notable scarcity of specialised or adequately staffed inclusive education services. geographic distance, a lack of accessible transport, the additional financial burden of transportation, and the limited economic resources of most families, significantly hinder access to care and education exacerbating the inequities in service provision. research on the prevalence of disability and the monitoring of access to appropriate care and services are particularly challenging in rural areas, where long distances, poor infrastructure (both in terms of roads and facilities), limited access to information technology and the urban-centric focus of universities hinder effective data collection and research. it is within this context that the author wishes to acknowledge professor swartz. his substantial contributions to the author’s professional development – as an academic, teacher, mentor and supervisor – are deeply appreciated. his work in the field of disability studies, both within south africa and the broader african context, has significantly advanced knowledge in this area through research and publication. his efforts have highlighted the needs of individuals with disabilities, informed policy and evaluated interventions, by collaborating with people living with disabilities, thus supporting, enabling and encouraging further research in this field, as evidenced in this publication. prevalence of disability according to statistics south africa (statssa 2024), the national prevalence of broad disability was reported as 15.7%, with urban and rural areas showing comparable rates of 15.2% and 16%, respectively. in northern kwazulu-natal, the reported prevalence was slightly lower at 15.4% for broad disability and 4.2% for severe disability. however, within the three districts comprising northern kwazulu-natal, the most remote, most impoverished and predominantly rural district was reported to have the lowest disability prevalence: 11.1% (broad) and 2.5% (severe). these findings are inconsistent with both the local experience of service providers and broader epidemiological expectations, raising concerns regarding the validity and reliability of the data in accurately reflecting the burden of disability in underserved regions. such inconsistencies highlight a critical issue in health systems planning and resource allocation, which often rely heavily on national statistics. when prevalence data underestimate the true magnitude of disability, particularly in marginalised, rural populations, the needs of persons with disabilities risk being rendered invisible in policy and practice. this phenomenon aligns with what has been described as the ‘inverse data law’ – those most at risk are often the least likely to be counted. resources are allocated according to numbers calculated in official reports. it illustrates the need to accurately measure the magnitude of people with disability within health information systems or risk the needs of persons with disability becoming invisible and underprioritised. as the who (2022) has noticed, underdiagnosis and under-reporting are key contributors to the persistent underestimation of disability prevalence globally (who 2022). earlier studies offer alternative perspectives. for instance, couper (2002) conducted a prevalence study in the same rural district and reported rates of 60 per 1000 in children under the age of 10 years living with disabilities. these included 17 per 1000 with mild intellectual disability, 10 per 1000 with cerebral palsy, 10 per 1000 with hearing loss, 10 per 1000 with moderate to severe intellectual disability and 4 per 1000 with seizure disorders. such figures underscore the likely underreporting in official statistics. international data corroborate this concern. an epidemiological study in the united states found that 1 in 3 adults in rural communities lives with at least one disability, with approximately 1 in 12 reporting three or more disabilities (zhoa et al. 2024). these findings reinforce the need for improved disability surveillance, especially in low-resource settings, and underscore the ethical imperative to ensure the inclusion of persons with disabilities in health information systems and policy frameworks. professor leslie swartz has emphasised the ethical responsibility of inclusive and accountable research practices. accurate prevalence measurement is not only a technical necessity but also a matter of health equity and social justice. context the author currently holds a clinical psychologist post, involved in the planning, development and delivery of psychological and mental health services in the northern region of kwazulu-natal, south africa. the position is based at a developing tertiary-level public hospital, which functions as a regional referral centre and forms part of an integrated health system. a significant component of service delivery targets individuals with disabilities, including intellectual, physical, and neurodevelopmental disabilities, as well as those experiencing functional impairments associated with mental and physical illness. the scope of services encompasses psychological assessment, psychoeducation and psychotherapy. in addition, the role involves facilitating access to educational opportunities, social services and disability grants. the role also encompasses collaboration with justice and welfare systems, contributing to a multidisciplinary, intersectoral model of care. academic partnerships have been established with the centre for research and health systems at the university of kwazulu-natal, and further formal collaboration is being pursued with the university’s department of psychiatry. the tertiary facility provides services to a catchment area comprising approximately 3 million people, encompassing three health districts in northern kwazulu-natal (statssa 2024). the regional health infrastructure includes 2 referral hospitals (1 general hospital and 1 specialising in maternal and child health), 15 district hospitals, 3 community health centres (chcs) and a network of primary health care (phc) clinics. the mental health workforce in the region includes 10 clinical psychologists at the tertiary-level, three additional psychologists based at district hospitals, one community service psychologist, and three registered counsellors (based at the chcs). the psychiatric team comprises two psychiatrists, one psychiatric registrar and several psychiatric medical officers. a regional mental health team includes an occupational therapist, a social worker and a psychologist. each district is supported by a mental health coordinator, and there are a number of mental health nurses across the region, nine of whom have received specialist training in child psychiatry. multidisciplinary mental health teams are variably structured, staffed and resourced across tertiary, district, and primary care levels. this reflects the evolving development of integrated mental health services within the public health system. the journey it is the questions one asks and seeks to answer that challenge their assumptions, guide their actions and give direction. one such question was posed to the author by professor leslie swartz, then clinical director at the university of cape town clinical psychology training programme: ‘what is the role of a clinical psychologist in south africa?’ this question was the topic of the entrance essay written during the selection process for the clinical psychology programme. this question has provided an ongoing thread during the author’s professional life. it was the year 2000, south africa was emerging from the social and economic injustices of apartheid. the discipline of psychology, like many other sectors, was confronting its role in a society marked by structural inequality and historical injustice. the author’s clinical training under the leadership of prof. swartz was intellectually broad, grounded in psychoanalytic thought, yet integrative in its orientation, drawing on diverse therapeutic modalities within the overarching framework of public mental health. clinical exposure spanned the life course and included individual, family, and system-based interventions. training placements occurred across a range of service contexts including psychiatric and general hospitals, community health clinics and partnerships with non-profit organisations. the assessment and intervention related to intellectual disability and learning disabilities, neuropsychological assessment in the context of acquired and degenerative neurological conditions were learnt. this training experience was intellectually and professionally formative, anchored by the foundational question of what it means to be a clinical psychologist in south africa. professional roles and identity are shaped by context. the author’s early career spanned roles in urban-based private practice, work with non-profit organisations (notably cape mental health), and ultimately, public sector service delivery. it was through the author’s involvement with the cape mental health sexual abuse victim empowerment (save) programme that the focus of his or her doctoral research emerged. under the supervision of professor swartz – by then based at stellenbosch university – the author pursued a phd focused on the forensic psychological assessment of people with intellectual disability who had experienced sexual abuse. the study addressed issues of access to justice and the utility of the psychological assessment of adaptive functioning, in informing expert testimony in legal proceedings. this work foregrounded questions about disability, vulnerability, and the interface between clinical psychology and the legal system. the author graduated with his or her phd at the end of 2017. by mid-2018, the author transitioned from a comfortable public sector job working in child and adolescent mental health in cape town to a role focused on the development of mental health services in northern kwazulu-natal. this region, while rich in natural beauty and biodiversity, encompasses some of the most socioeconomically disadvantaged and rural districts in south africa. the opportunity marked a pivotal shift – an extension of the core professional question posed nearly two decades earlier, now applied in a vastly different and under-resourced context. the process growth of staffing and skills development in 2018, psychological services in the regional health system were markedly underdeveloped. at the time, there were only two psychologists at the general (tertiary) hospital and none at the affiliated mother and child hospital. among the 15 district hospitals in the region, only 2 employed permanent psychologists and 2 had community service psychologists. initial efforts focused on relationship-building and collaboration with some key stakeholders: the three district mental health coordinators, the medical managers of the district hospitals and red cross air mercy services in providing transport for outreach. outreach visits and capacity building workshops began with health professionals working in mental health at the district hospitals. the aim was to identify and build a mental health team at each hospital. this included medical officers, mental health nurses, occupational therapists, social workers and psychologists and varied from site to site. research collaboration with university of kwazulu-natal (ukzn) centre for research of health systems began a process of implementation of the mental health integration programme (mhint) in one of the district hospitals and their clinics. the programme focused on a systemic integration of common mental health conditions into the phc system with a focus on depression, anxiety, and the link of mental health to non-adherence in chronic conditions. in response to the increasing costs of medico-legal claims for damages related to perinatal management, the department of health in kwazulu-natal designated centres of excellence targeting cerebral palsy care. there was recognition of the importance of mental and psychological health in the care of people with cerebral palsy and their families and of the underdevelopment of psychological services in the region. this resulted in increased staffing of the psychology department from two to seven psychologists in early 2020. the emergence of the coronavirus disease 2019 (covid-19) pandemic posed substantial challenges. psychological services adapted to the support of frontline workers and bereaved families. mindfulnessbased interventions and online individual and group therapy interventions were developed to address trauma, grief, moral injury and burnout. the pandemic period significantly heightened institutional awareness of mental health. psychological services were reintroduced at the mother and child hospital through voluntary deployment of two psychologists from the general hospital team. this catalysed the filling of the existing posts, and the final vacant post at the general hospital was filled, resulting in a 10-member team. between 2019 and 2020, child psychiatric nurses were trained in the region through initiatives of the provincial department of health. while attrition has occurred because of retirement, death and career changes, the remaining cadre of nurses continue to contribute meaningfully to child and adolescent mental health care. between 2022 and 2024, the national health insurance programme supported the appointment of three registered counsellors and the establishment of a regional mental health team comprising a senior occupational therapist, a senior social worker and an experienced clinical psychologist. institutional grants, awarded by the discovery foundation in 2022 and 2023, to the departments of psychiatry and psychology respectively, have facilitated continued professional development. mentorship and training enable district-level medical officers to complete postgraduate diplomas in mental health, with several progressing to specialist psychiatric training. within the psychology department, emphasis has been placed on developing contextually appropriate clinical competencies, particularly in neuropsychological and neurodevelopmental assessment and various therapeutic modalities. funding has also been used to provide equipment and training to the wider regional mental health teams. services to people living with disabilities given limited access to private care by patients, long waiting lists for services and barriers to care such as transport costs and time away from work, interventions must be highly targeted. clinicians in this context practise very focused listening, building of rapport, accurate assessment and formulation skills and targeted interventions. it takes particular skill to work effectively. cerebral palsy across the two hospitals, a cerebral palsy centre of excellence has been established and psychologists participate in interdisciplinary teams supporting individuals with cerebral palsy and their families. this includes neurodevelopmental and cognitive assessments for intervention planning and school placement, along with psychological support of families. neurodevelopmental disorders supportive psychotherapy is offered for families of children with genetic syndromes. a dedicated weekly neurodevelopmental psychology clinic provides both diagnostic assessments and follow-up care. a whatsapp-based support group for caregivers of children with autism spectrum disorder (asd) offers accessible psychosocial support, supplemented by in-person sessions focusing on communication, toileting, eating and behavioural management. this is coordinated by the child psychiatric nurse and has input from various members of the multidisciplinary team. intellectual disability collaborative work with the department of education includes the assessment of children with intellectual disability to facilitate access to care dependency and appropriate schooling. psychoeducation for caregivers and professionals regarding the south african sterilisation act no 44 of 1998 (republic of south africa, 1998) and the rights of girls and women remains ongoing. at the general hospital, a weekly clinic provides cognitive and functional assessment for social grants. a new partnership with a local school has enabled intellectually disabled students to access competitive swimming opportunities. collaborative work with the department of justice includes a weekly forensic clinic, evaluating victims of sexual abuse and assessing criminal capacity in children, with many presenting with comorbid intellectual disability. psychologists are called on by the courts to provide reports and expert evidence if required. there is an ongoing collaboration to provide psychoeducation to the prosecutors in the region regarding access to justice for people with intellectual disability. gender-based violence therapeutic services are provided through the thuthuzela care centre for survivors of sexual and gender-based violence, aiming to prevent post-traumatic stress disorder and the resultant emotional disability. chronic illness and functional loss psychological assessments and support are provided to renal patients requiring decisions on levels of care. inpatient referrals include individuals with recent amputation, spinal injuries or burns who require assistance adjusting to disability and functional change. mental illness both hospitals have clinics for new referrals and initial assessment. these services are often oversubscribed, with waiting periods exceeding 3 months. psychologists work closely with psychiatry to provide therapeutic support for individuals with severe and persistent mental illness. an on-call psychologist is available daily for urgent referrals. referrals to these clinics come from within the hospital, the district hospitals, the phc clinics and non-governmental organisations (ngos). hearing impairments recently, the team has expanded its capacity to assess individuals with significant to profound hearing loss requiring cochlear implants. support and mentorship were received from audiology colleagues and experienced psychologists at baragwanath hospital, gauteng. gender-affirming health care an ongoing process of psychoeducation and service development seeks to address the healthcare needs of gender-diverse individuals who, because of disabling social, structural, and institutional barriers, experience limited access to gender-affirming care. outreach given the geographic dispersion of district hospitals without psychologists, an outreach programme was developed to support mental health colleagues in remote areas. each general hospital psychologist is responsible for specific district hospitals, establishing referral pathways and offering direct clinical services. these services often focus on intellectual and neurodevelopmental disability assessments required for access to education or grants. training workshops are provided for broader mental health teams and tailored to district-level requests. outreach logistics include both car and air travel. partnership with red cross air mercy services has enabled access to hospitals that are otherwise 4 h – 5 h away by road. a detailed explanation of this model of collaborative care is due to be published in a local journal towards the end of 2025. ongoing initiatives training accreditation of clinical psychology internship placement has been applied for with the health professions council of south africa. provision of clinical training opportunities for student psychologists from the university of zululand is in process. infrastructure limitations remain a significant barrier to providing local professional training. research active collaborations are underway with national and international research institutions and staff are engaged in postgraduate qualifications or ongoing research. current interests include: integration of mental health services at phc level development of mental health screening tools for children and adolescents the integration of cultural understanding and practices in mental health care gender-affirming health care pain and palliative care parenting practices autism spectrum disorder in this context neuropsychological and cognitive assessment in this context using the monthly statistics collected to describe the work of a rural psychologist. conclusion the questions originally posed by professor swartz remain highly pertinent, with answers continuing to evolve over time. central among these are: what is the role of the clinical psychologist within a rural south african context? how can disability be effectively foregrounded, and how might its prevalence and associated needs be accurately assessed and represented? furthermore, how can we meaningfully engage and collaborate with persons with disabilities – across diverse forms and experiences – in the pursuit of improved mental health outcomes and the advocacy for equitable access to appropriate services? acknowledgements the author would like to acknowledge the ongoing work and contribution of the psychologists in the department described. competing interests the author declares that he or she has no financial or personal relationships that may have inappropriately influenced him or her in writing this article. author’s contribution g.k.d. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the author is responsible for this article’s results, findings, and content. references couper, j., 2002, ‘prevalence of childhood disability in rural kwazulu-natal’, south african medical journal 92, 549–552. morris, l.d., grimmer, k.a., twizeyemariya, a., coetzee, a., liebrand, d.c. & louw, q.a., 2021, ‘health system challenges affecting rehabilitation services in south africa’, disability and rehabilitation 43(6), 877–883. https://doi.org/10.1080/09638288.2019.1641851 rall, d. & swartz, l., 2025, ‘public healthcare personnel’s experience and opinions on access and readiness to provide mental health care in a remote rural area in south africa’, rural and remote health 25(1), 8961. https://doi.org/10.22605/rrh8961 republic of south africa, 1998, sterilisation act, no. 44 of 1998, government printers, pretoria. statistics south africa (statssa), 2024, profiling socio-economic status and living arrangements of persons with disabilities in south africa, 2011–2022, report no. 03-01-37, statistics south africa, pretoria. united nations general assembly, 2006, convention on the rights of persons with disabilities: resolution/adopted by the general assembly, a/res/61/106, united nations, new york, ny,viewed n.d., from https://digitallibrary.un.org/record/588742?v=pdf. world health organization (who), 2022, global report on health equity for persons with disabilities, viewed n.d., from https://www.who.int/publications/i/item/9789240063600. zhao, g., okoro, c.a., hsia, j., garvin, w.s. & town, m., 2024, ‘prevalence of disability and disability types by urban–rural county classification – us, 2016’, american journal of preventive medicine 57(6), 749–756. https://doi.org/10.1016/j.amepre.2019.07.022 abstract introduction methodology results discussion conclusion acknowledgements references about the author(s) shamila gamiet department of physiotherapy, university of the western cape, cape town, south africa michael rowe department of physiotherapy, university of the western cape, cape town, south africa citation gamiet, s. & rowe, m., 2019, ‘the role of rehabilitation care workers in south african healthcare: a q-methodological study’, african journal of disability 8(0), a537. https://doi.org/10.4102/ajod.v8i0.537 original research the role of rehabilitation care workers in south african healthcare: a q-methodological study shamila gamiet, michael rowe received: 01 june 2018; accepted: 30 aug. 2019; published: 29 oct. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the south african department of health identified the need to train a new cadre of community health worker (chw) in the field of rehabilitation as part of their 2030 health plan that aims to improve primary healthcare (phc) and community-based rehabilitation (cbr). community health workers can be effectively utilised in cbr if their role is understood and their potential is not limited by professional protectionism and scepticism. a clear understanding of the scope of practice of a new cadre will minimise resistance by health professionals. objectives: the aim of this study was to explore rehabilitation health professionals’ perception of the role of the new cadre, called rehabilitation care workers (rcws), in south african healthcare. methods: q-methodology was used to gather and interpret the data. a convenient sample of 16 health professionals participated in the study. participants ranked statements about the role of the rcws from strongly agree to strongly disagree. data were entered into pqmethod software program for statistical and factor analysis. results: two factors emerged. participants loading onto factors 1 and 2 were of the opinion that rcws’ role would be to strengthen phc and cbr and to promote participation of people with disabilities (pwd) in intermediate care and community. conclusion: rehabilitation health professionals’ positive perception of the new cadre is encouraging so that it could ensure their effective utilisation in cbr. rehabilitation care workers were perceived as capable of enhancing the lives of pwd by ensuring inclusive development. keywords: community; community-based rehabilitation; community health workers; intermediate care; participation; primary healthcare; south africa. introduction people with disabilities (pwd) often come from vulnerable communities and experience difficulties with everyday functioning. they struggle to access health and rehabilitation, education and employment opportunities and this leads to poorer health outcomes, lower education achievements and higher rate of unemployment in comparison to people without disabilities (world health organization & world bank 2011). one of the main barriers that pwd face is poor access to healthcare services (world health organization & world bank 2011). it is estimated that only a small percentage of pwd have access to rehabilitation and basic health services (world health organization & world bank 2011). the world health organization (who) has identified community-based rehabilitation (cbr) as a comprehensive framework for addressing the needs of pwd in compliance with the principles of primary healthcare (phc) (who 2010). community-based rehabilitation thus improves pwd access to rehabilitation services. however, due to a shortage of skilled rehabilitation health professionals, effective implementation of cbr programmes requires additional health workers (gupta, castillo-laborde & landry 2011). the who recommended that community health workers (chws) be utilised in cbr to improve access to rehabilitation and health services. community health workers have been defined by the who as members of the communities in which they work, selected by the communities, supported by the health system and who have shorter training periods than qualified health professional workers (who 1989). community health workers have been recognised globally as playing a vital role in improving access to health services in order to strengthen phc and cbr (friedman 2002; lorenzo, motau & chappell 2012). their role is to deliver rehabilitation services because it is expensive and difficult to get health professionals to work in the community (rule, lorenzo & wolmarans 2006). in south africa, pwd in rural areas have benefitted from cbr programmes utilising chws. these benefits include physical rehabilitation, education on rehabilitation, emotional support, counselling, access to resources and assistive devices and, most importantly, reintegration into the community (dawad & jobson 2011). community health workers made a significant impact in the lives of pwd through home visits, exercise, assistive devices and training in activities of daily living, resulting in an increase in independence, better social integration and mobility. community health workers also had a positive impact on communities by changing the negative attitude towards pwd (chappell & johannsmeier 2009). according to dovlo (2004) chws can be effectively utilised in cbr if their role is understood and their potential is not limited by professional protectionism and scepticism. a clear understanding of the scope of practice of a new chw will minimise resistance by health professionals (hugo 2005; rule et al. 2006). in south africa the role of chws may be limited due to a lack of understanding of their capabilities. this could be due to poor input on cbr and the role of cbr personnel during their professional training (bury 2005; lehmann & gilson 2012). health professionals should also provide supportive supervision, guide and monitor chws and facilitate teamwork to ensure quality care (chappell & johannsmeier 2009). they must ensure that chws execute tasks at acceptable standards to ensure better health outcomes (freeman et al. 2012). this enhances the credibility of chws by clarifying their roles and by ensuring they can address the problems of pwd (freeman et al. 2012; jaskiewicz & tulenko 2012). a lack of knowledge of cbr and its cadres can therefore lead to poor supervision and limitation of the chws’ role in cbr (chappell & johannsmeier 2009; lehmann & gilson 2012). sufficient support for any new cadre of chw is crucial in developing a patient-centred approach, integrated provision of care, continuity of care and a holistic approach to treatment which is on-going (crigler, gergen & perry 2013; jaskiewicz & tulenko 2012). it is therefore important that rehabilitation health professionals accept new cadres of worker as this is essential in the successful implementation of cbr programmes. the south africa’s national department of health (doh) is committed to addressing the needs of pwd by strengthening phc services and community-based services (cbs) (western cape government health 2014). primary health ensures that pwd live a socially and economically productive life, allowing for employment, education, and engagement in family and community activities. the south african doh therefore identified the need to train a new cadre of chw in the field of rehabilitation as part of their 2030 health plan that aims to improve phc and cbr. this new cadre with a new skill set will be able to work across the health, education, livelihoods, social and development sectors thus ensuring effective implementation of cbr in south africa (mannan et al. 2012). it was therefore recommended that the new cadre of rehabilitation care workers (rcws) should have mixed skills so as to address the functional abilities of an individual. these skills included self-care, playing, working, learning, communicating, hearing and mobility (maclachlan, mannan & mcauliffe 2011; rule 2013). in 2012, a pilot project was commissioned and funded by the south african doh in the western cape (dohwc) to train 30 rcws. the vision of this pilot training programme was to upgrade the skills of current chws to become recognised members of the phc team. the new cadre was chw renamed to rcw. the cbr guidelines, recommended by the who in 2010, provided the conceptual framework for the training curriculum. the rcws were given selected knowledge and skills on physiotherapy, occupational therapy and speech therapy to equip them to support and care for pwd in two underserved districts in the western cape. however, this was not the first time south africa trained community rehabilitation workers (crws). in the late 1980s, representatives of speech and hearing therapy, occupational therapy and physiotherapy discussed the need to implement cbr programmes and to train crws. as a result, in the 1990s three training programmes were set up for crws: (1) run by south african christian leadership assembly (sacla) health in khayelitsha, cape town, (2) run by the university of witwatersrand and tintswalo hospital in acornhoek and (3) by alexandra health centre in johannesburg (rule et al. 2006). unfortunately, the training of crws was abandoned due to increasing reluctance by the south african doh to support personnel with multidisciplinary skills (concha 2014). although this current pilot runs the same risk, the success of this pilot project is important as it will establish the basis for future training of rcws in south africa. rehabilitation health professionals provide the main link between rcws and the health system. in order to provide quality healthcare and to ensure the success of cbr, rehabilitation health professionals need to understand the role of rcws so as to support, motivate and mentor them (chappell & johannsmeier 2009; jaskiewicz & tulenko 2012). understanding the opinions of rehabilitation health professionals, as key stakeholders in the health system, will identify how well rcws will be utilised in cbr. therefore, the aim of this study was to explore rehabilitation health professionals’ perceptions of the scope of practice of rcws in south african healthcare. methodology design q-methodology was used to gather and interpret the data. q-methodology is a mixed method approach to research as it involves elements of quantitative and qualitative analysis in systematically studying subjectivity (ramlo 2016). this methodology was invented by british physicist–psychologist william stephenson in 1953, who was interested in finding a way to explore the subjectivity of an issue (herrington & coogan 2011; van exel & de graaf 2005). studies that use q-methodology are helpful in exploring opinions and preferences that can have an impact on behaviour (brown 1993). as this study explored rehabilitation health professionals’ perception of the role of rcws in the south african healthcare, q-methodology was identified as a suitable research method to analyse the viewpoints of the participants. study population and sampling the total study population included 27 rehabilitation health professionals who engaged directly with the rcws in the clinical settings during their work-integrated practice learning module. they were full-time and part-time physiotherapists, occupational therapists, speech therapists, physiotherapy assistants and occupational therapy technicians employed at intermediate care facilities and all the clinical educators who supervised the rcws in the clinical setting. intermediate care facilities refer to inpatient institutions that provide healthcare to patients who are not critically ill but still need support to carry out activities of daily life after an episode of illness. although the total population of 27 rehabilitation health professionals were invited to participate in this study, only 16 participants consented to take part. procedure q-methodology has two components. the first component is the collection of data to inform the q-concourse. the concourse refers to the flow of communicability surrounding any topic in the ordinary conversation, commentary and discourse of everyday life (brown 1993). a q-concourse consists of a selection of statements regarding the topic. in this study, the data required to develop the concourse were collected from focus group discussions, document analysis and a review of the relevant literature. several statements of opinion emerged. these statements are referred to as the q-set. data collection for the second component of a q-study is called q-sorting. participants were provided with written and verbal instructions on the q-sorting process. q-sorting was conducted collectively at one adult intermediate care facility and one paediatric intermediate care facility in the western cape, where rcws were placed for their clinical training. some participants completed the q-sorting individually in their own time, and then electronically returned their completed q-data score grids to the researcher. the participants ranked the q-set on a data scoresheet in the form of a grid. the data scoresheet is a diagram consisting of columns in which the statements, obtained from the q-concourse, were ranked. the participants were instructed to read all the statements carefully and then sort the statements into three categories, namely statements they agreed with, statements they disagreed with and statements they felt neutral about. the participants took the statements which they agreed with, and then ranked each statement from ‘strongly agree’ to ‘agree somewhat’ on the data scoresheet. statements were ranked from +1 to +4. statements that participants strongly agreed with were ranked +4 on the data scoresheet. the participants then took the statements which they disagreed with and ranked these statement from ‘strongly disagree’ to ‘disagree somewhat’ on the data scoresheet. statements were ranked from −1 to −4. statements that participants strongly disagreed with were ranked −4 on the data scoresheet. the statements which they did not have an opinion on were placed in the neutral column with numerical value of 0. participants explained in writing on their data scoresheets why they strongly agreed and strongly disagreed with the statements they ranked at the extreme ends (that is +4 and −4). after the q-sorting was completed, the participants reviewed how they had ranked the q-set and could make changes if they so wished. this ensured that the participants’ personal viewpoints were accurately portrayed. a completed data scoresheet is called a q-sort and represents the raw data. data analysis pqmethod software, which is a statistical programme tailored to the requirements of q-studies, was downloaded from the internet for the statistical and factor analysis of the q-data. the programme aggregated the data into factored sets. in the data analysis process, the correlation matrix of all q-sorts (the completed data scoresheets) was calculated. this showed the level of agreement or disagreement between each of the participants in this study. the statistical method of factor analysis was used to identify common points of view among q-sorts. in q-factor analysis, the correlations between persons as opposed to variables are factored. it determined which sets of people clustered together. the statements and the 16 individual q-sorts were entered into the pqmethod programme. a centroid analysis was selected to extract factors. the resulting final set of 16 q-sorts loaded onto two factors. these loadings represented the extent to which each q-sort was associated with each factor. a study limitation identified was the potential for bias as one of the researchers had some involvement with the rcw training programme. ethical considerations permission to conduct this study was obtained from the humanities and social sciences research ethics committee of the university of the western cape (registration number: 13/10/38). permission was obtained from all participants before commencing the research. the personal information and the names of the participants were not disclosed in the reporting of the findings and pseudonyms were used thereby ensuring anonymity. all data gathered were treated confidentially. results the two factors that emerged from this study were named according to the participants’ viewpoints of the role of rcws in south african healthcare that were strongly featured. factor 1 was named ‘strengthen cbr’ and factor 2 was named ‘promoters of participation’. these two factors were significantly different with p < 0.01. nine participants loaded onto factor 1 and 7 participants loaded onto factor 2 which is outlined in table 1. table 1: number of factors identified and the number of participants loading onto each factor. factor 1: strengthen community-based rehabilitation participants in factor 1 agreed with the statements outlined in table 2 and ranked these statements at +4. the positive sign indicates the agreement and the numerical value indicates the strength of the agreement. statements ranked at +4 are statements that the study participants strongly agreed with. table 2: the statements that participants loading onto factor 1: ‘strengthen cbr’ strongly agreed with. nine of the 16 participants loaded onto factor 1. these nine participants were of the opinion that rcws will strengthen rehabilitation services in intermediate care and in the community and will assist in promoting the participation of clients in the community, and they must be supervised by qualified health professionals. the participants in factor 1 strongly disagreed with the statements outlined in table 3 ranking the statements at −4. the negative sign indicates the level of disagreement and the numerical value indicates the strength of disagreement. table 3: the statements that participants loading onto factor 1: ‘strengthen cbr’ strongly disagreed with. the nine participants who loaded onto factor 1 felt that the rcws were not sure of their role in intermediate care and as a result the rcws lacked confidence in performing tasks delegated by the health professionals. participants felt that it would be beneficial to have an rcw employed at their health facility as they disagreed with the statement that they will not benefit from having the rcws working there. factor 2: promoters of participation participants in factor 2 agreed with the statements outlined in table 4 and ranked these statements at +4 where the positive sign indicates the agreement and the numerical value indicates the strength of the agreement. table 4: the statements that participants loading onto factor 2: ‘promoters of participation’ strongly agreed with. seven of the 16 participants loaded onto factor 2 and strongly agreed, as did the participants loading on factor 1, that rcws should be included in the healthcare system at both intermediate care level because they worked well in structured settings and in the community where they would promote the participation of patients in their activities of daily living. participants perceived intermediate care facilities as structured environments. this in turn would allow rcws to assist in strengthening rehabilitation services across the health platform. participants in factor 2 disagreed with one statement only outlined in table 5 and ranked this statement at −4. table 5: the statement that participants loading onto factor 2: ‘promoters of participation’ strongly disagreed with. the seven participants loading onto factor 2 shared the same opinion as those participants loading onto factor 1 that health professionals would benefit from having an rcw employed at their health facility. this is deduced from the statement above which participants disagreed with. participants were of the opinion that there is a definite place for rcws in intermediate care settings and that it would be beneficial to have rcws employed at intermediate care centres. participants elaborated on why they felt they would benefit from having rcws at their health facility on their q data score grids. the following are examples of the participants’ responses: ‘i will definitely benefit from having an rcw at my facility. nursing staff are not always able to follow through on activities in the ward whereas the rcw is able to do so. positioning in seating devices and positioning of splints are not always managed well by nursing staff thus the rcw is able to correct a child’s position in the buggy and make sure splints are worn correctly.’ (p1, female, 37 years old, occupational therapist) ‘i have already experienced the advantage of giving specific tasks and roles to the rcw working at my facility and have seen how this changed and benefitted in the patient’s overall care and continuation of care, especially tapping into their cultural, community knowledge and to help with language barriers (e.g. xhosa speaking clients).’ (p2, male, 33 years old, physiotherapist) ‘i feel there is a place for rcws in our health system as they spend more quality time engaging with clients, families, understand contextual factors better and are constantly visible in communities. rcws proved to fit well into intermediate care centres. they were able to adapt to their environment and relate better to the clients as they come from communities. they interacted and engaged with families and this is similar to what they did in community.’ (p3, female, 52 years old, occupational therapist) the results of this q study showed that health professionals in the western cape perceived that rcws’ role would be able to strengthen cbr and promote participation of pwd in the community and in intermediate care. discussion in south africa, cbs have two service elements, namely home and community-based care, and intermediate care. these two elements are vital in strengthening the continuity of care and person-centred care towards achieving south africa’s 2030 healthcare vision. in line with this vision, rcws were introduced into the health system as part of an interdisciplinary rehabilitation team. the major theme that emerged from this q-study was the perceived role of rcws in the south african healthcare. rehabilitation health professionals expressed their strong support for the utilisation of rcws in intermediate care and in the community. rcws would be assisting with the continuum of care of patients in the western cape by extending health services in underserved communities thereby improving the quality of life of pwd (rule 2013). people with disabilities are often excluded from health, education, employment and social services which in turn can worsen disability and poverty (world health organization & world bank 2011). however, through cbr programmes, the rcws in the western cape would be able to focus on rehabilitation to address the difficulties faced by pwd who often struggle to access health services (lorenzo et al. 2012). the rcws would be able to assist pwd by breaking down barriers which would otherwise hinder their ability to enjoy social integration. this is supported by friedman (2002) and lorenzo et al. (2012) who reported that crws have a vital role in improving access to health services. binken, miller and concha (2009) also found that crws provided valuable services to patients with a range of impairments, and performed tasks such as accessing resources, referrals, screening and assessment, individual and group treatment, and provision of appropriate assistive devices and techniques to facilitate interaction in communities. similarly, in a study performed in botswana, malawi and south africa, it was found that community disability workers (cdws) achieved social inclusion for pwd across the lifespan. these cdws worked towards improving the health and educational opportunities of pwd, strengthening their ability to obtain a livelihood and empowering them and their families to understand their human rights in society (van pletzen, booyens & lorenzo 2014). crws were also described by lorenzo et al. (2015) as critical change agents in improving disabled youths’ access to health and education resources as crws were aware of the needs of disabled youth and worked towards integrating them into existing services. despite significant contributions that crws make, they struggle to gain recognition from health professionals and social development practitioners as few higher education institutions consider career pathways for crws (lorenzo et al. 2015). rehabilitation health professionals in this study reported that there was a definite role for rcws in the community. they perceived rcws as being capable of assisting pwd to become active participants within their community by ensuring reintegration. rcws can deliver rehabilitation services in communities because it is expensive and difficult to get health professionals to work in the community (rule et al. 2006). rcws were also more comfortable working in the households of pwd as they had prior work experience in this setting. this provided further support by the health professionals for rcws to work in the community as they would be able to continue with treatment and rehabilitation after discharge from hospital. the rcws would also be able or follow up on patients seen at community health centres thus contributing to patient-centred approach to healthcare (hugo 2005; rule et al. 2006). furthermore, chappell and johannsmeier (2009) reported that community rehabilitation facilitators (crfs) made a significant impact in the lives of pwd through home visits, exercise, assistive devices and training in activities of daily living resulting in an increase in independence, better social integration and mobility. working in intermediate care was a new experience for the rcws as they had only worked in community settings before the pilot project. rehabilitation health professionals in this study agreed that rcws worked well in the structured environments of intermediate care. they felt that the rcws are capable of following work schedules and programmes which are drawn up for them. rehabilitation health professionals felt that rcws themselves were not sure of their role in intermediate care and therefore they were not assertive when executing the tasks delegated to them. this could imply poor health outcomes if patients are not effectively managed. however, this study found that the rehabilitation health professionals had a positive perception of rcws implying support for rcws in intermediate care. rehabilitation health professionals indicated their support for rcws working under their direct supervision, performing tasks which have been delegated by them. it is important that rcws are well supervised and guided by health professionals so that they can adequately address the needs of pwd and communities thus ensuring good health outcomes (crigler, gergen & perry 2013; jaskiewicz & tulenko 2012). it could be expected that rehabilitation health professionals will provide efficient support for rcws thus facilitating their successful integration and utilisation in cbr. chappell and johannsmeier (2009) reported that rehabilitation health professionals need to accept a new cadre as it is essential in the successful implementation of cbr programmes. conclusion this study concludes that rehabilitation health professionals in the western cape perceived rcws as capable of strengthening phc and cbr across the service platform by extending health services to pwd both in intermediate care and in the community. rehabilitation health professionals felt that rcws can ensure the inclusive development of pwd in society. these positive perceptions are encouraging and could imply that rcws will receive efficient support and supervision from rehabilitation health professionals thereby ensuring their effective utilisation in cbr programmes. however, in order to ensure the sustainability of cbr in south africa, it is imperative that cbr programmes, rcws and rehabilitation health professionals are well supported by the national government. the current training project of a new cadre with a new skill set, capable of addressing the needs of pwd across their lifespan, can be seen by the south african national doh as successful. the doh should therefore commit to training and supporting rcws so as to extend rehabilitation services to more marginalised communities. it is further recommended that the south african doh evaluate and monitor rcws and work towards upgrading their knowledge and skills through continuous education workshops. rehabilitation health professionals can also be supported through continuing professional development workshops aimed at understanding all aspects of cbr and its cadres. this would take south africa one step closer to achieving its 2030 health vision which aims to ensure access to health and rehabilitation for all. acknowledgements this research was part of a master’s thesis authored by shamila gamiet, entitled ‘health professionals’ perceptions of rehabilitation care workers’. the research was conducted at the university of the western cape in south africa. a master’s degree was awarded in july 2016. competing interests the author was not inappropriately influenced in writing this article. authors’ contributions s.g. wrote this article from the data gathered in her master’s study. all sections were guided and contributed on by her supervisor, m.r. funding the author declares that this study was funded by the western cape department of health (wcdoh299/2012). data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references binken, r., miller, f. & concha, m.e., 2009, ‘the value of the service offered by the community rehabilitation worker: lessons from a review’, south 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road to wellness, viewed 25 april 2015, from https://www.westerncape.gov.za/assets/departments/health/healthcare2030.pdf. world health organization, 1989, strengthening the performance of community health workers in primary health care: report of a who study group (meeting held in geneva from 2 to 9 december 1987), viewed 12 june 2014, from http://www.who.int/iris/handle/10665/39568. world health organization, 2010, community-based rehabilitation guidelines, world health organization press, geneva, viewed 19 may 2014, from http://www.who.int/disabilities/cbr/guidelines/en/. world health organization & world bank, 2011, world report on disability 2011, viewed 08 april 2015, from http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf. abstract background methods results personal factors environmental factors impact of non-inclusive education discussion conclusion acknowledgements references footnote about the author(s) lena m. banks international centre for evidence in disability, london school of hygiene & tropical medicine, london, united kingdom xanthe hunt department of global health, faculty of medicine and health sciences, institute for life course health research, stellenbosch university, bellville, south africa khumbo kalua lions sight first eye hospital, blantyre institute for community outreach (bico), blantyre, malawi providence nindi lions sight first eye hospital, blantyre institute for community outreach (bico), blantyre, malawi maria zuurmond international centre for evidence in disability, london school of hygiene & tropical medicine, london, united kingdom tom shakespeare international centre for evidence in disability, london school of hygiene & tropical medicine, london, united kingdom citation banks, l.m., hunt, x., kalua, k., nindi, p., zuurmond, m. & shakespeare, t., 2022, ‘“i might be lucky and go back to school”: factors affecting inclusion in education for children with disabilities in rural malawi’, african journal of disability 11(0), a981. https://doi.org/10.4102/ajod.v11i0.981 original research ‘i might be lucky and go back to school’: factors affecting inclusion in education for children with disabilities in rural malawi lena m. banks, xanthe hunt, khumbo kalua, providence nindi, maria zuurmond, tom shakespeare received: 16 nov. 2021; accepted: 29 may 2022; published: 14 nov. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: globally, children with disabilities are often excluded from and within schools. objectives: this study explored experiences of inclusion in education amongst children with disabilities in malawi. the enquiry focused on the perspectives of children and their caregivers on barriers and enablers of inclusion. method: data were gathered through in-depth interviews with 37 children with disabilities, 61 caregivers and 13 teachers from ntcheu and mangochi districts and analysed thematically using the international classification of functioning, disability and health as a framework. results: overall, this research study found that children with disabilities face persistent and systemic barriers to attending, progressing and learning in school. conclusion: school outcomes were influenced by a range of impairment-related, personal and environmental factors, including poor health, household poverty, attitudes of caregivers, teachers, peers and children themselves and school resources for inclusive education. contribution: these findings carry implications for policy and planning in inclusive education and other services to support the health and well-being of children with disabilities in malawi. keywords: inclusive education; malawi; exclusion; disability; school. background universal access to quality education is a human right. international consensus documents, including the sustainable development goals (sdgs), codify this right and provide clear targets for countries to try and achieve in terms of educational access (united nations 2015). universal access to quality education is also essential to poverty reduction. the right of children with disabilities to education is codified in article 24 of the united nations convention on the rights of persons with disabilities (uncrpd) (united nations 2006), and the sdgs (particularly goal 4, to ensure inclusive and equitable quality education and promote lifelong learning opportunities for all) recognise the importance of ensuring accessible education (united nations 2015). however, the world’s 240 million children with disabilities (united nations international children’s emergency fund [unicef] 2021) face a range of barriers that limit their access to and participation in education. exclusion from the educational environment and from educational attainment is still persistent, particularly in lowand middle-income countries (lmics), despite some gains made in the past few decades (mizunoya, mitra & yamasaki 2018; unicef 2021). compared with their peers without disabilities, children with disabilities are less likely to enrol in school, and if they do enrol, they have lower levels of school attendance and lower rates of transition to higher education than their peers without disabilities (banks et al. 2017; united nations 2019; world health organization [who] & world bank 2011). a landmark study in 2018 showed that across 15 lmics, having a disability reduced the probability of a young person attending school by 30.9% (mizunoya et al. 2018). a variety of challenges can create barriers to educational inclusion, participation and attainment amongst children with disabilities, including inaccessible school facilities and transport to schools, inadequate teacher skills in inclusive education, caregiver and teacher attitudes and lack of resources to support inclusive education (banks et al. 2019; singal et al. 2015; taneja-johansson, singal & samson 2021; united nations 2019). a recent analysis by le fanu, schmidt and virendrakumar (2022) puts forward a useful conceptualisation of inclusive education based on general comment 4 on article 24 of the crpd, to which this article adheres. these authors hold that inclusive education can be conceptualised as having the following dimensions: longitudinal (it should be lifelong), location (it should be available to children near to where they live), pedagogical (it should include quality learning opportunities), environmental (it should include efforts towards social inclusiveness and physically accessibility in schools) and consequential (the results of inclusive education should be visible in educational and social outcomes amongst children with disabilities). inclusive education, as articulated in general comment 4 on article 24, includes reasonable accommodations, continuous personalised support, access to needed assistive technologies and adapted curricula. both of these strategies entail the use of contextually appropriate teaching and learning adaptations, which are responsive to the needs of children with disabilities in the classroom (le fanu et al. 2022). some of these challenges and barriers may be more significant in some settings than others, making it important to understand contextual variation in experiences. by isolating the factors limiting participation in a specific setting, it may be more possible to identify the best ways of promoting inclusion of children with disabilities in education. this research study explores barriers and enablers to inclusion in education for children with disabilities in malawi, with a focus on the perspectives of children and their caregivers.1 education and disability in malawi estimates on the prevalence of disability amongst school-aged children in malawi vary from 0.43% to 5.60% (mizunoya et al. 2018; unicef malawi 2020). the ministry of education, science and technology (moest) is responsible for formal education in the country, including for children with disabilities (deputy director [district education office ntcheu] pers. comm., 2015). by law, primary education is free in malawi. however, secondary schools may charge school fees and often have a limited number of spaces available. the main model for inclusive education in malawi is resource classrooms, special education units within mainstream schools where children with disabilities receive specialised instruction and extra resources to support their learning. as of 2020, there were 60 and 88 resource rooms at the primary and secondary level, respectively (ministry of education malawi [moem] 2021) – a small fraction of total classrooms (0.8% for primary and 1.3% of secondary) (moem 2021). there are also some so-called ‘special schools’ that provide instruction to children with disabilities in segregated settings. these schools are primarily for children with vision and hearing impairments. however, reflective of the shift from segregated to inclusive education, many of these schools are being converted into resource centres (artiles et al. 2015). still, data from 2016 to 2017 indicate that the vast majority – 98% of primary school students and 93% of secondary students with disabilities – attend mainstream schools, where inclusive education resources are unlikely to be provided (unicef malawi 2020). malawi is signatory to several international conventions that outline the rights of children with disabilities to education (artiles et al. 2015). moreover, the priorities enshrined in these conventions are codified and in some instances operationalised in malawian laws and policies, such as the disability act (2012). the country’s commitment to equal access to and inclusion in education for children with disabilities is reflected in the national policy guidelines on special needs education (2007), the national education investment plan 2020–2030, the national disability mainstreaming strategy and implementation plan 2018–2023 and the national policy on the equalisation of opportunities for persons with disabilities (2006) (eide & munthali 2017; unicef malawi 2020). additionally, the malawi growth and development strategy iii 2017–2022 includes several disability-specific education goals (government of malawi 2017), and malawi has a national strategy on inclusive education (2017–2021), which covers eight priority areas, including improving capacity for inclusive education (e.g. teacher training, school resources and school accessibility improvements), learner identification and needs assessments and increased funding for and monitoring of inclusive education roll-out (banks & zuurmond 2015). even though there is a strong legislative basis for inclusion in education, gaps in implementation remain. a national survey in 2012–2013 found 44% of primary school-aged children with disabilities were out of school compared with 13.2% of those without disabilities (gap of 30.8 pp, p < 0.001), which widened even further for secondary school-aged students (68% vs. 21.6% non-attendance, gap of 46.5 pp, p < 0.001; mizunoya et al. 2018). these numbers may have improved since this survey: the ministry of education collects data on enrolment of children they identify as having special education needs, and there has been more than a doubling of enrolment in primary school (from 83 666 in 2009 to 186 501 in 2020) and quadrupling of secondary school enrolment (2780 in 2009 to 10 290 in 2020; moem 2021; unicef malawi 2020). according to the 2018 malawi population and housing census estimates, there are approximately 333 000 children of school-going age with disabilities nationwide. for the 2019–2020 school year, the ministry of education had identified 196 and 791 primary and secondary school students, respectively, with special education needs (government of malawi 2020), and thus it is unclear if the remainder are still out of school or not counted in official records as having a disability. two past studies by de souza (2021) and chirwa, lingolwe and naidoo (2021) have explored perceptions and experiences of inclusive education amongst teachers in malawi. both studies found that the implementation of inclusive education in the country has been marked by challenges, in part stemming from a lack of orientation and training amongst the teachers tasked with transforming their mainstream classrooms into inclusive ones and in part a result of a lack of resources to support inclusive education (chirwa et al. 2021, de souza 2021). however, little qualitative research has been carried out in respect of schooling for children with disabilities and their caregivers in the country, and therefore little is known about their lived experiences of school and its educational and social dimensions. in this study, the international classification of functioning, disability and health (icf) is used as a framework for thinking about experiences of education amongst children and their caregivers and teachers in malawi. the icf includes attention to the following dimensions: body functions and structures of people and impairments of body functions and structures activities and their limitations participation and its restrictions environmental factors. under the icf (and indeed the uncrpd), the extent to which an impairment leads to participation restrictions is influenced by the interaction between an individual’s impairment and personal and environmental factors. importantly, the icf is also a biopsychosocial model of disability and thus necessitates thinking about individuals with disabilities as embedded in families, communities and countries. as such, the interview schedule, the way the data was analysed and the manner in which it is presented below pays attention to interactions of children’s impairments and the environment at the individual, family, school and community level, as well as how these result in participation restrictions. methods this study uses a qualitative design involving in-depth interviews with children, their caregivers and teachers. a qualitative methodology was deemed to be appropriate, as an understanding of the experiences of education was sought from key stakeholders’ own perspectives. in-depth interviews were selected because it was desirable to provide space for each child, caregiver and teacher to provide their own account and understanding of the phenomena; it was also important to ensure that tailored accommodations could be made for each child based on his or her specific needs. all participants were recruited from population-based surveys conducted in two districts, ntcheu (central region) and mangochi (southern region). the 53 participants from the ntcheu district were recruited as part of the key informant method (kim) child disability project (for full study details, see tataryn et al. 2017). the 58 participants from mangochi were recruited for the deworm 3 study (ásbjörnsdóttir et al. 2018). based on the surveys, the prevalence rate of childhood disability (ages 0–18) was found to be 1.7% in ntcheu and 3.7% in mangochi (tataryn et al. 2017). in both the settings, children were purposively recruited using demographic data from the underlying surveys to ensure representativeness by type of impairment or functional limitation, gender and school status (in vs. out of school) (see table 1 for details). in ntcheu, children of 12–18 years were eligible for inclusion, as this study was focused on children transitioning to secondary school. in mangochi, selected children were 6–14 years old, as the underlying study focused on mass drug administration for soil transmitted helminths delivered to primary school children. the two studies were conducted separately with different research teams and some differences in aims, which explains the differences in the study sample. however, both used similar interview guides to collect data. table 1: participant demographic details. interviews were conducted with children and their caregivers in both sites, and in ntcheu district, teachers of children with disabilities were included. in ntcheu, data collection was undertaken in october – november 2015, whilst in mangochi, data were collected in march 2020. teacher interviews were planned but were unable to proceed in mangochi because of the commencement of the coronavirus disease 2019 (covid-19) pandemic and the closure of schools. a semistructured interview guide was used, with children and their caregivers interviewed separately. details on the child’s communication needs were sought in advance. interviews were conducted in chichewa or yao. in ntcheu, interviews were conducted by l.m.b., a non-malawian, female researcher with translation support. in mangochi, interviews were conducted by local data collectors with supervision from p.n. all of the interviews were audio-recorded, transcribed and translated into english for analysis by trained transcribers and translators. interviewers also took detailed notes during the interviews, and these were shared with the analysis team to support framing of the transcript data. the topics that were covered in the caregiver interviews included: (1) family background; (2) the child’s impairment, abilities and general health, including access to health or rehabilitative services; and (3) the child’s education, including social and academic experience in school and/or reasons for non-attendance. for the child interviews, the interviewers used a visual tool to prompt discussions about schooling. the interviewers provided children with emotion cards (faces with ‘happy’, ‘sad’ and ‘angry’ expressions) and asked about their experiences at home, on the way to school, in the classroom, in the playground and in using the toilet facilities. children were prompted to use the cards to indicate in which settings they felt which emotions, and then these links were explored. teacher interviews in ntcheu focused on their observations of the sampled child’s experience in the school. they were also asked some broader questions about their own experiences and reflections on teaching children with disabilities. after each day of fieldwork, interview notes were reviewed by the lead field researchers (l.m.b. in ntcheu, p.n. and x.h. in mangochi) and the interviewers. data coding was managed using nvivo 10, a software for qualitative data analysis. thematic analysis was used to analyse the data, with independent coders examining the transcripts to identify units of meaning, synthesising these units, where necessary, into larger concepts maps (themes), and then examining the inter-relationships between themes and different participant characteristics (e.g. gender and impairment type). given that the icf, reinforced by the uncrpd, was used as a framework to guide the researchers’ engagement with the data, themes were ultimately organised in a manner, which corresponded to the icf’s framing of disability and functioning. ethical considerations ethical approval for each of the studies was received from the london school of hygiene & tropical medicine’s observational / interventions research ethics committee (ref. no. 6409‑01 and 17637) and the university of malawi’s college of medicine research and ethics committee prior to commencing data collection. before the start of each interview, informed written consent was received from participants above the age of 16 years. for younger children and those with communication or intellectual impairments, a simplified oral assent was sought, and pictorial child-friendly information sheets were developed. referrals for health and child protection services were provided as needed. the study was conducted in accordance with the helsinki declaration as revised in 2013. results data from 61 children (23 from ntcheu; 38 from mangochi) and 13 teachers (all ntcheu) were collected (table 1). for the 61 children, data were gathered through 61 caregiver interviews (23 from ntcheu; 38 mangochi) and 37 child interviews (17 from ntcheu; 20 from mangochi). non-response in children was because of severe communication difficulties (e.g. deaf with no knowledge of a formal sign language, severe intellectual impairment). table 2 describes the main themes and subthemes from the thematic analysis. however, it is worth noting that often the factors that affect each child’s access to and experiences of school are complex and interrelated. for instance, the deprivations associated with poverty could keep children at home working instead of in schools, but household poverty could also be worsened by the costs associated with disability. as such, child absenteeism from the school could not be seen as purely because of the child’s impairment nor purely because of the economic circumstances of the household; rather, it is because of a dynamic interaction between them. table 2: themes and subthemes. health and impairment-related factors poor health and access to health services across both settings, participants observed that poor health amongst students with disabilities, as well as the need for treatment, was a significant reason for absenteeism, difficulties learning, grade repetition and, in a few cases, non-attendance. often, health problems in children were related to their impairment or health conditions. several children had intellectual and physical impairments stemming from unmanaged epilepsy or sensory impairments from eye and ear infections. the children’s impairments were the result of health conditions going untreated for a long time. at the time of interviewing, the children had long-term impairments, and many experienced frequent flare-ups of the underlying health condition. in some cases, new episodes caused pain and worsening severity of impairment: ‘i sometimes fail in class because i can’t see what’s on the board, and i also miss classes when i have the [eye] swellings while my friends are learning. [how often is it that you can’t see the board even when you sit at the front?] it’s not all days; it’s only when my eyes are itchy and tears come out that i can’t see what’s written on the board, and that is why i fail. [how often does that happen in a month?] three days a month … it happens when my medication is finished.’ (girl, age 15, visually impaired, in school) participants also observed that seeking health care and treatment for their impairment or impairment-related symptoms led to frequent absences from schools. distance was a particular challenge for rehabilitation and other disability-related specialist services, which tended to be far from where people lived. several children were kept away from school – in some cases starting school late or failing to attend altogether – because the caregivers were seeking health care for them, including potential ‘cures’. in these instances, some caregivers thought that their child could not be educated without the resolution of his or her impairment. in a few instances, the involvement of community-based organisations was helpful for accessing needed health and rehabilitation services. even receiving an expert opinion on realistic expectations for their child’s disability in a few cases was helpful at preventing caregivers from spending unnecessary time and money searching for cures or unneeded treatments. personal factors household poverty financial hardship and poverty were dominant themes that were present in almost all interviews. even though primary school is free in malawi, there are still some costs associated with schooling, for which caregivers are financially responsible. these costs include yearly registration, uniforms and school supplies. given the high level of poverty in the sites, these costs (although small) were unmanageable for families. although many households in the study settings were living in poverty, the research found indications that households with children with disabilities may have been particularly affected. many caregivers reported spending additional time caring or seeking services for their child with a disability, which could reduce the time spent on economically productive activities. most households with children with disabilities reported additional disability-related costs, particularly for health services, which reduced their capacity to pay for other expenses, including for schooling. poverty was a dominant factor across both settings for children being out of school, missing classes or having a range of other difficulties with learning. one of the children (girl, age 12, hearing impaired, not in school) explained how shame and bullying over her family’s financial situation deterred her from going to school: interviewer: ‘what would make you go back to school?’ girl: ‘if i had somewhere to write, a pen and a pencil.’ interviewer: ‘when you were going to school, didn’t you have those materials?’ girl: ‘i didn’t have any … we were writing on the floor.’ interviewer: ‘what else would make you go to school?’ girl: ‘a uniform and a dress.’ interviewer: ‘do the other kids at school also wear uniforms?’ girl: ‘yes …’ interviewer: ‘what do your friends say about you not going to school?’ girl: ‘they tell me to go to school.’ interviewer: ‘and what do you say?’ girl: ‘i tell them i don’t have clothes to wear to school … other kids would be laughing at me when i wore dirty clothes.’ in malawi, secondary schools may charge a fee, and in some cases, this is prohibitive for families, preventing children with and without disabilities from progressing. many secondary schools are concentrated in urban areas and far from where children live, resulting in further costs for accommodation and travel. almost all families highlighted costs as the main reason why education beyond primary school was unlikely for their child. perceived cost was also the primary reason which caregivers provided for not sending their children to special schools. one of the fathers explained that although his 17-year-old son had been accepted to a special school that was based several districts away, he ‘failed to support transport because of my poverty condition’. other caregivers reported that they had not investigated special or resource schools as they assumed the costs would be too high. just under a third of children included in this study had missed their school to work, mainly in the home. this was experienced as unfair by some children, as exemplified by one child’s (boy, age 13, epileptic, in school) reflection on being kept home to work: interviewer: ‘what makes you angry at home?’ boy: ‘if my mother tells me not to go to school … i want to go to school.’ interviewer: ‘why does she tell you not to go to school?’ boy: ‘she says i should look after the baby when she goes to the fields.’ motivation the majority of children and their caregivers held positive attitudes towards education. as a mother of a boy aged 15 with epilepsy and profound hearing and intellectual impairment who is not in school explained, the key reasons why her son and other children wanted to attend school were because they wanted to learn and spend time with their peers: ‘he started [school] on his own, he would admire his friends. he followed his friends to school, then he demanded that we buy a notebook for him … he just wants to learn … when he was at home he would scribble on the floor. you could see that if he was alright, he could have been educated.’ (boy, age 15, epileptic and multiple impairments, not in school) some children who had dropped out of school expressed a keen desire to return. an 18-year-old boy explained that even though he was top of his class academically in primary school and was accepted into a secondary school, he was unable to attend because of school fees. still, he had kept his old notebooks and reviewed them frequently to ‘remind myself what i learned in class, because i might be lucky and go back to school’. environmental factors social attitudes caregivers many caregivers were supportive of their child pursuing an education, endorsing the idea that education was the gateway to a better future to ‘gain knowledge’ and ‘a better job’. some reflected that their own socio-economic problems were because of a lack of education, and thus they wanted a different future for their children. similarly, others felt that the types of jobs that were common in their community (mostly in agriculture, involving manual labour) would be difficult for their children to perform, particularly for children with mobility limitations, and they hoped education could lead to other desk-based jobs. still, several caregivers interviewed were not sure of the use of sending their children to school and questioned the ability of their children to learn. these attitudes were influenced in part by the lack of resources for inclusive education at local schools. the mother of a 16-year-old girl with a profound visual impairment explained why her daughter had dropped out: mother: ‘from the way i look at it, i don’t think she can manage, because she doesn’t see what has been written on the board … i felt that since she doesn’t see properly, then she can’t continue with school; she also said she wants school but since she is not able to see, she just accepted that she will just be staying at home.’ interviewer: ‘how does [child] feel now that she doesn’t go to school?’ mother: ‘she doesn’t feel good about it; she sometimes cries that had it been that she continued schooling she would have been in form 1.’ others were unaware of their child’s right to an education or were unsure how to advocate on behalf of their children within the school system. several caregivers felt that sending their child to school would burden teachers and peers. this was particularly the case where children had behavioural challenges. an 18-year-old girl with intellectual and physical impairments had never been to school, as her mother explained that ‘it will be difficult for the teacher to teach other children, she will give her a burden’. these opinions were in some cases reinforced by actions from teachers and school staff, who had suggested or explicitly requested that children not be sent to school. some caregivers were hesitant to request accommodations that could assist with their child’s learning. the mother of a 13-year-old child with a hearing impairment explained that she had not spoken to teachers about giving her daughter a front seat, as she was afraid ‘i would look like i am troubling them by telling them what to do’. still, a few others took proactive roles, taking time to meet their child’s teachers to explain their child’s impairment and small accommodations that might help their learning. concerns for their child’s safety was a common reason for keeping children, particularly those with high support needs, out of school. the mother of a 13-year-old boy, who has multiple impairments, explained that they stopped him from going to school when he tried to follow his friends, as ‘[teachers and peers] beat him up. i have heard that they beat him at school. that’s when we follow him and stop him from going to school’. fears of children, particularly with intellectual or visual impairments, getting lost on the way to school were also reported in a few instances. safety was a concern, particularly for girls, when attending schools far away, which is common for secondary schools. these safety concerns should also be viewed within the context of many children and caregivers reporting discrimination and abuse, both at school and in the community. teachers attitudes of teachers towards children with disabilities were mixed. some children reported positive relationships with their teachers, including ones who had taken additional steps to support their learning or personal development. a girl with a visual impairment explained that ‘the teachers gave me a front seat and write big fonts, and [i] am able to see’. similarly, the grandmother of a child with a hearing impairment explained that a teacher had bought clothes and food for her child. however, in several instances, teachers or school staff had asked caregivers not to enrol or stop their child from coming to the school. for instance, the caregivers of a 17-year-old girl with multiple disabilities reported that teachers at the local school had refused to enrol her: mother: ‘[w]hen the teacher saw her condition, they said she couldn’t start school but they told us that we should go with her to the hospital …’ father: ‘when she went with her mother to enrol her, they rejected her. [then] i went there. they said the child needs another school. at that time, we didn’t know of the other school.’ concerns over disruptive behaviour were a major reason provided for why teachers requested students not to attend, whilst a few felt that the child should prioritise receiving medical care before coming to the school. in speaking to teachers in ntcheu, some questioned the place of children with disabilities in mainstream schools. several felt that children with disabilities would be better served in special schools, which they believed had the resources and the mandate to teach such children. interestingly, these attitudes were held even with respect to a few of their students with moderate impairments, who they reported were doing well academically. peers almost all children faced victimisation at school, including bullying, discrimination and other forms of violence. in most cases, classmates were the perpetrators of the abuse. in some cases, fear of victimisation affected children’s desire to go to school. the mother of a 14-year-old boy with physical and intellectual impairments explained that: ‘[his classmates] tease him that he is disabled; they also beat him … and steal his food … in the past he used to run away from school … he would sometimes say he will stop school, but i encourage him.’ (boy, age 14, multiple impairments, in school) similarly, the mother of a 13-year-old girl with intellectual and physical impairments discussed the impact of bullying: ‘i just hear from her friends that [my child] did something bad [at school] but i know that it’s because the others are not used to her … they have problems communicating … because of her mental status, she sometimes annoys her friends and they beat her … [and] make fun of her arm condition and her dumb condition … it affects her … sometimes she just stays quiet thinking about it.’ (girl, age 13, multiple impairments, in school) still, positive attitudes of peers were an important enabler to attending school or learning. some children with sensory impairments reported that friends lent them notes if they could not see the board or hear the teacher’s instructions. a few children pointed to friendships with their peers as helping them feel less isolated in the face of bullying from other classmates. for example, a 16-year-old boy with a physical impairment explained: ‘i love my friends. they don’t gossip about me and aren’t violent. but there are other learners who keep saying that they can’t be friends with me because of the way i walk … [my friends] just tell me to leave them alone and that maybe their whole family does not have people with disabilities … [so] i just tell [the kids who tease me] that god should bless them, i just walk with the ones that like me….’ (boy, age 16, physical impairment, in school) resources for inclusive education all categories of participant in this study – children, teachers and caregivers – suggested that schools are often not adequately equipped to include and accommodate students with disabilities, particularly children with more complex learning needs such as children with intellectual impairments or profound hearing and visual impairments. as one of the mothers explained, the lack of accommodations and support for her child led to limited learning whilst in the classroom: ‘[his hearing impairment] affects his life more especially when it comes to his educational side of it. his classmates are able to hear when they have learned in class, but he cannot; when he comes home and we ask him what he has learned, he tells us parallel things. hence, we are worried because our child is not able to hear in class.’ (mother of a boy [age 8, hearing impairment, in school]) several caregivers and children reported that they only needed minor adaptations, such as being placed at the front of the classroom to better hear the teacher or see the blackboard. sometimes these minor adaptations were provided, but in other cases they were denied. a caregiver of a child with a hearing impairment explained that she had asked for him to sit at the front but was told that he was too tall, which would block the view of other children. teachers, caregivers and children alike observed that large class sizes were a major barrier to learning and teaching. teachers in mainstream schools in ntcheu who were interviewed reported class sizes of 100–186 students, which was double to triple the maximum class size of 60, which was in place at the time of data collection. the high ratio of students to teacher made it challenging to provide individual support, or even recognise that a child required additional support: ‘i have 120 children in the classroom. it’s supposed to be 60. it’s difficult to help learners individually. i see learners with these disabilities and i can see they are not understanding me, but i can’t stop to assist.’ (teacher, mainstream school, ntcheu) high turnover rates of teachers were also observed, which could affect building rapport and understanding the educational needs of children with disabilities. the mother of a girl with a hearing impairment explained that ‘because the teachers keep changing, they don’t really get used to her condition, so it is hard for them to keep their attention on her’. she had gone to the school in the past to explain her daughter’s disability and ask for her to be placed at the front of the classroom to hear better, but was discouraged from continuing as ‘it is difficult because it means i need to be talking to every teacher that comes’. the teachers interviewed reported receiving little to no training in inclusive education. one of the teachers at a mainstream school in ntcheu, who had just finished her training, reflected on how inclusive education was covered: ‘[t]hey just said you would have children with disabilities in their class and to help them and treat them fairly, consider them. but we were just being warned that you have to make sure they understand.’ (teacher, mainstream school, ntcheu) however, she and other mainstream school teachers reported that they were not provided with any specific teaching strategies or resources. even teachers at resource schools appeared to have limited training. a teacher at a resource school in ntcheu explained that she only taught children with more mild disabilities, whilst children with more severe disabilities never transitioned into the mainstream classes within the school. similarly, a child with a profound hearing impairment who attended a resource school did not know formal sign language. the sibling of this child, who attended the same resource school, reported that the teachers did not use sign language with his brother but instead showed ‘interest’ and occasionally asked him to assist with communication using the informal signing method they had developed at home, which only allowed for limited, basic communication. physical accessibility of schools could also be challenging. several mainstream and resource schools in both districts had built ramps to accommodate wheelchair users; however, some of these ramps would be difficult for children to use because of very steep inclines, disrepair, uneven and difficult terrain preceding ramps, and the presence of steps after ramps preventing the entry into classrooms and other facilities. journey to school a common barrier to attending schools was travel. walking was the only mode of transport for almost all children. almost half of children and caregivers reported challenges in getting to school, which was particularly common for children with mobility limitations. difficulties in getting to school led to frequent absences and lost learning time for some children (boy, physical impairment, age 15, in school): boy: ‘this year the school is close by; it is in the village. i could have been in standard 8 or form 1, but in the previous years it was difficult to get to school because the school is very far from the village. so now i am in standard 6.’ interviewer: ‘how far is the former school? if you start off at 6 am, when do you get there?’ boy: ‘i could get there at around past 8 in the morning. i would find people already in class; sometimes i could get there at around past 9 … when i walk for a distance i need to sit down [because of pain in my legs and back], and my friends leave me behind.’ distances to secondary schools were an anticipated challenge to transitioning, given the limited supply of schools. similarly, travel to special and resource schools was an issue for the small number of children who had ever attended one of these institutions, as well as a perceived challenge that caregivers reported as a reason for not looking into these options. for example, a child with a profound hearing impairment had gone to a special school in another district for preprimary school. the fee for transport (malawian kwacha 1600, approximately $6 per year) was cited by his caregiver as the main reason they had stopped sending him to the school. to reduce travel time for special and secondary schools, most children boarded either at or near the school, although this carried costs. special or resource schools could start at preprimary, meaning that young children were away from their families for long periods of time. the caregiver of the boy with a hearing impairment who had gone to a boarding resource school as a young child noted safety concerns with boarding, such as that her child complained of not getting enough food, bullying by others and that the children were not properly supervised. impact of non-inclusive education poor learning outcomes although some children were doing well at schools, despite facing a range of challenges, the majority of participants reported that children with disabilities were performing poorly in terms of learning outcomes. most children had repeated a grade, and many had repeated grades multiple times. this was attributed to children having missed time at schools because of illness or seeking healthcare or caregivers delaying enrolment, as well as due to a lack of effective inclusive education in schools. on average, children with disabilities were almost three grades behind the official national standard for their age. as a mother of a boy explained: ‘[being held back] affects him very much. as you can see, he is very old compared to the class he is in. the friends that he started with are in class 5; others are in class 6, but he is just stuck in class 2. this simply means that he is not able to hear what the teacher says, so i am always worried about my child when it comes to education, since it is not working properly and that’s bad for his life.’ (boy, aged 8, hearing impaired, in school) some children were promoted to higher grades even if they had not mastered the learning objectives for that level. the mother of a girl with a hearing impairment explained that she was upgraded to higher levels so that she would be with children closer to her own age, even though she did not pass her tests as ‘she is growing up and she can’t be remaining in the same class’. social exclusion and isolation many children had difficulties keeping pace with the rest of their class and hence often repeated grades. late starts and grade repetitions led to them being older than their classmates, thus contributing to feelings of low self-esteem amongst some children with disabilities. reflecting on being held back a grade, one girl (aged 13, hearing impaired, in school) explained: interviewer: ‘why did you repeat?’ girl: ‘i was not intelligent enough … i didn’t know how to read and write.’ interviewer: ‘when you repeated, how did you feel about that?’ girl: ‘i felt bad because repeating a class means you’ve taken a step backwards in education.’ interviewer: ‘did your other friends repeat too?’ girl: ‘no.’ furthermore, as noted above, many children experienced bullying and stigmatisation by peers and teachers alike whilst attending the school. in some instances, these experiences affected children’s desire to attend school and caregivers’ willingness to send them. even without overt discrimination, lack of accommodations in and outside the school could lead to social isolation. a 15-year-old girl with a visual impairment discussed how she was often either intentionally or unintentionally excluded from social activities with her peers: ‘sometimes my friends run to school instead of walking, which makes it difficult for me because i can’t see properly. it makes me feel sad for myself … sometimes they don’t want me to participate in the game, because they are worried they’ll hurt my eyes. that frustrates me.’ (girl, aged 15, visual impairment) decisions to drop out of school could have negative psychological impacts on children with disabilities. children and their caregivers spoke of feelings of frustration and isolation after having to drop out. a 16-year-old girl who has a profound visual impairment discussed her desire to return to school, as she sits at home ‘admir[ing] my friends who go to school’. she reflected that not going to school ‘… hurts me because if i had continued to school, i would’ve been independent’. this concern about the impact on their future of not continuing with school, or of limited learning whilst in school, was repeated frequently by both children and their caregivers. the mother of a young man aged 18 with a hearing impairment who required frequent medical care for recurrent ear infections explained her son’s anguish when he had to drop out of secondary school after securing a coveted spot, because of the inability to afford school fees: ‘he [wanted] to do well in school so that he can have a bright future. he said for one to get a good job, you have to go to school … [when he dropped out] he cried the whole day. i also cried … i think [now that he has dropped out] his future will be difficult. education is the only key to a successful future.’ (boy, aged 18, hearing impairment) discussion overall, this research study found that children with disabilities in mangochi and ntcheu districts faced multiple barriers to participating and benefitting from education, which operated at the family, community, school and education system level. disabling environments, including the lack of resources for inclusive education, inaccessible schools and teaching materials, inadequately trained teachers and negative attitudes on disability were major barriers preventing children with disabilities from attending and progressing in schools. these factors also affected their learning and social experiences at schools. understanding the barriers and enablers that affect access to education for children with disabilities in malawi is essential for the country (as well as other lmics) to meet international targets for universal education. this study reinforces and can help explain findings from quantitative research indicating that children with disabilities are less likely to attend and progress in education (banks et al. 2017; mizunoya et al. 2018; simo fotso et al. 2018; united nations 2019). it also suggests that traditional metrics, such as attendance, attainment or grade level, may underestimate disparities in education between children with and without disabilities. this study and others have found that attending school or even progressing to higher grades may not be indicative of children with disabilities’ learning (banks et al. 2019; singal 2008). whilst the quality of education is an issue for all children, children with disabilities appear more likely to be excluded from the learning process because of the lack of inclusive education provisions, including teacher training and specialist resources (chitiyo et al. 2015; jolley et al. 2018; mkandawire, maphale & tseeke 2016; taneja-johansson et al. 2021). in the study areas, less than 2% of primary school classrooms had any inclusive education resources (moem 2021). the shortage of teachers trained in inclusive education is particularly high for secondary schools (chitiyo et al. 2015). many barriers identified by this research affect access to education for all children, and not only children with disabilities. for example, poverty is the most common reason for school dropout nationally, and perceived costliness of fees is a major driver of failure to progress to secondary schools in the country for all children (moem 2021). similarly, large class sizes affect all learners, as do frequent absences for work, poor health or other reasons. still, children with disabilities are disproportionately affected by these challenges. for instance, extra costs associated with disability can exacerbate poverty and reduce capacity to pay for education (mitra et al. 2017; simeu & mitra 2019). other studies have found households incur additional direct and indirect costs related to sending children with disabilities to schools, such as for fees to specialist schools and resources, transportation or caregivers’ time accompanying children to school (banks et al. 2021; hanass-hancock & mckenzie 2017; kamaralzaman et al. 2018), although more research in this area is needed. the increased risk of poverty in households with a member with a disability affects the entire family, and it can have an impact on the educational outcomes of children without disabilities (hailemichael et al. 2019; simeu & mitra 2019). similarly, large class sizes reduce individual attention for all learners. however, this study and others highlight that children with disabilities more likely need individualised supports – in some cases as minor as being moved to the front of the class – which teachers may not recognise when contending with class sizes of over 60 students (mkandawire et al. 2016). more intensive support, such as instruction in sign language for children with profound hearing impairments or an adapted curriculum for children with intellectual impairments, was rarely provided to children in this study. irregular attendance because of reasons such as the need to work, illness, inability to afford school fees and during menstruation has been observed for children without disabilities (bodat, ghate & majumdar 2013; weideman et al. 2007). however, children with disabilities in this and other studies also often had long and frequent absences and late starts to school, because of poor health conditions and the need for seeking health and rehabilitation services because of their impairment and underlying health conditions (banks et al. 2017, 2019, 2021). another dominant theme through this research was the impact of negative attitudes and discrimination of disability. these attitudes could directly impact schooling decisions, such as when teachers requested or suggested children with disabilities not enrol or drop out, or when caregivers did not send their children to school with a belief that they could not benefit from an education. bullying and mistreatment from peers and teachers and in the community could affect children’s desire to stay in school, their self-esteem and their social and learning experience whilst at school. the increased risk of children with disabilities – particularly girls with disabilities – to violence, including disability-targeted abuse and discrimination, has been observed in other studies (banks 2017). in addition to the devastating toll on affected girls, the fear for children’s safety was a barrier to accessing education, as in most cases going to school implies the need to travel, sometimes of long distances. several limitations should be considered when interpreting the results of this study. importantly, some children with severe intellectual impairments or profound hearing impairments with no sign language knowledge were not interviewed because of challenges in communication. in these cases, information was generally provided by the caregiver alone. additionally, teacher interviews were not possible in mangochi because of the start of the covid-19 pandemic, meaning that the views of teachers in this study setting were not captured. there were also some differences in the study design between the two settings (e.g. age groups), which limit comparability. finally, social desirability bias, or discomfort in disclosing sensitive information, may have led to underreporting on certain topics. however, interviews with caregivers, children and teachers brought multiple perspectives that allowed for the triangulation of data. one of the valuable contributions of this research is that it shows how important it is to consult with children with disabilities directly about their own lives, rather than relying only on the input from caregivers and teachers. certain topics that arose in the interviews, such as bullying, came out mostly from child interviews. including meaningful participation of children with disabilities and promoting a rights-based approach in all education programmes and policies are essential to ensure that they are aligned with the uncrpd and that children with disabilities are having their needs and rights met. there are clear areas for further research, as well as some needing urgent attention from programmes and policymakers. there is a need to address the linkages between health, education and poverty amongst children with disabilities. this study has highlighted potential direct and indirect impacts of unmet health needs and poverty on education, indicating that health and social protection programmes are needed in addition to inclusive education initiatives. there may be a role to be played by multidimensional community-based rehabilitation programmes in coordinating responses between sectors. overall, there is a lack of data on the effectiveness of interventions to improve access to education for children with disabilities in both malawi and other lmics (jolley et al. 2018; saran, white & kuper 2020). it is worth noting that the findings of this study echo those conducted in other lmics (magumise & sefotho 2020; okyere et al. 2019; singal 2019; singal et al. 2015) and some recent studies in malawi (phiri 2021). challenges accessing education amongst children with disabilities are well-documented, as are difficulties implementing inclusive education in lmics (de souza 2021; mphwina 2022; sharma & deppeler 2005; van tran et al. 2020). whilst the present findings contribute to this broader literature, they also yield important insights for the malawian context in particular. as discussed in the introduction section, there are three main options for education for children with disabilities in malawi: education in mainstream schools without resource centres, education in mainstream schools with resource centres and education in specialised or segregated schools. there was a notable lack of discussion of resource centres by the participants, with most discussing challenges in inclusion in mainstream settings generally or barriers to accessing specialised or segregated schools. it is possible that these centres are not yet sufficiently widely available to be moving the needle on children with disabilities’ inclusion in schools. increasing the number of schools that have the resources and facilities for inclusive education is a core aim of the sdg (target 4a) and the uncrpd. coupled with the barriers and challenges associated with poverty, the apparent lack of accessible, meaningfully inclusive services for their children created sometimes insurmountable barriers to education. most notably, across the dataset, it was clear that the multidimensional poverty and the related barriers to education are primary drivers of low enrolment, attendance and attainment in schools for children with disabilities. it is likely that approaches to improve educational access and attendance in the country will need to include poverty-alleviation strategies which acknowledge the role of financial constraints and a range of deprivations in preventing children from achieving their full potential. conclusion malawi has made strides in improving access to education for children with disabilities, as reflected in the increased attention to disability in its policies. however, this study indicates that further action is needed before inclusion in education can be a reality, particularly for poorer children and those with intellectual or communication disabilities. returning to the definition of inclusive education shared at the beginning of this article, it is possible to view challenges in all of its dimensions: in terms of the longitudinal aspects, it is clear that transitions to higher levels of education are extremely difficult to make, as is maintaining continual attendance during persistent health difficulties and the need for seeking health services; in terms of location, schools – particularly resource schools – are often geographically inaccessible to children; in terms of the pedagogical aspects of inclusion, there are material and human resource constraints on the quality of learning opportunities; and the environmental dimensions such as social inclusiveness and physical accessibility are lagging; all of which result in the consequences of education – educational inclusion, participation and attainment – being stymied. there is a need for investing in support for families, schools and communities, as well as in laws, policies and monitoring mechanisms, so that positive, inclusive school experiences for children with disabilities are not only possible but also the norm. the commitments in the sdgs and the uncrpd to an ‘inclusive and equitable quality education’ will not be met unless there is increased investment and prioritisation not only of inclusive education but also to broader disability-inclusive planning (e.g. in health systems, social protections and poverty alleviation programmes). acknowledgements the authors acknowledge the hard work of the data collectors who facilitated the interviews, as well as the participants who so generously shared their experiences and thoughts. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.m.b. and x.h. were involved in data analysis and the drafting of the manuscript, they are joint first authors. l.m.b. was also extensively involved in the overall management of the projects from which the data are drawn. k.k. and p.n. provided in-country support and leadership for data gathering and contributed to revised versions of the manuscript. m.z. and t.s. provided supervision and support on the projects, and contributed to drafting and revising this manuscript. funding information this research was funded by the united kingdom foreign, commonwealth and development office (penda grant: po8073). data availability the data that support the findings of this study are available 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https://doi.org/10.26822/iejee.2020358220 weideman, m., goga, s., lopez, d., mayet, m., macun, i. & barry, d., 2007, learner absenteeism in the south african school system: research for the department of education, community agency for social enquiy & joint education trust, viewed n.d., from https://www.gov.za/sites/default/files/gcis_document/201409/learnerabsenteeism0.pdf. world health organization (who) & world bank, 2011, world report on disability, who press, geneva. footnote 1. some of the data reported in this study come from a non-peer reviewed report produced at the project endline (banks & zuurmond 2015). this article significantly expands upon those findings. abstract introduction methods review findings discussion conclusion acknowledgements references about the author(s) desta debalkie atnafu international centre for evidence in disability, department of population health, faculty of epidemiology and population health, london school of hygiene and tropical medicine, london, united kingdom department of health system management and health economics, school of public health, bahir dar university, bahir dar, ethiopia femke bannink mbazzi international centre for evidence in disability, department of population health, faculty of epidemiology and population health, london school of hygiene and tropical medicine, london, united kingdom medical research council (mrc), uganda virus research institute (uvri) and london school of hygiene and tropical medicine (lshtm) uganda research unit, entebbe, uganda mezgebu yitayal department of health system management and health economics, school of public health, bahir dar university, bahir dar, ethiopia hannah kuper international centre for evidence in disability, department of population health, faculty of epidemiology and population health, london school of hygiene and tropical medicine, london, united kingdom citation debalkie atnafu, d., bannink mbazzi, f., yitayal, m. & kuper, h., 2025, ‘does life expectancy vary by disability status in lmics?: a systematic review and meta-analysis’, african journal of disability 14(0), a1514. https://doi.org/10.4102/ajod.v14i0.1514 note: additional supporting information may be found in the online version of this article as online appendix 1. review article does life expectancy vary by disability status in lmics?: a systematic review and meta-analysis desta debalkie atnafu, femke bannink mbazzi, mezgebu yitayal, hannah kuper received: 07 july 2024; accepted: 23 jan. 2025; published: 12 mar. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with disabilities on average experience health care barriers, poorer health and higher mortality. objectives: this study aims to review and synthesise life expectancy (le) and years of life lost (yll) comparing people with disabilities to those without in low and middle-income countries (lmics). method: a systematic review was conducted across six databases. longitudinal studies with a comparator group that measured le in or yll between people with and without disabilities in lmics were eligible for inclusion. two reviewers independently assessed study eligibility, extracted data and assessed the risk of bias. meta-analyses were undertaken using r 4.3.3. the study assessed heterogeneity with i2 and publication bias with a funnel plot. sub-group and meta-regression analyses were performed, and the risk of bias was evaluated. results: twelve full-text articles were included in this meta-analysis. the pooled mean le was lower in people with disabilities (57.98 years; 95% confidence intervals [ci]: 53.40–62.95) compared with people without disabilities (70.86 years; 95% ci: 64.06–78.38). the overall weighted years of yll in people with disabilities was 15.84 years (95% ci: 11.1–22.61). there was no significant difference in yll between men (16.33 years; 95% ci: 11.49–23.21) and women (13.7 years; 95% ci: 8.45–22.22). conclusion: the average le in people with disabilities was substantially lower compared to those without disabilities in lmics. this inequity highlights that health systems and public health efforts are failing to meet the needs of people with disabilities and must be improved to become more inclusive. contribution: the study emphasises the need for inclusive policies and robust research in the health system to address health disparities. keywords: disability; life expectancy; years of life lost; lmics; meta-analysis. introduction globally, there are over 1.3 billion (16%) people with disabilities (world health organization [who] 2022), with 80% residing in lowand middle-income countries (lmics) (who 2022). this number is anticipated to increase with further population growth and ageing (who 2011). people with disabilities face a range of exclusions and adverse conditions. with respect to health, on average, they experience poorer health and higher mortality on account of a number of different pathways (kuper & phyllis heydt 2019; who 2011, 2015). firstly, they are on average poorer and often reside in economically impoverished settings (who 2011, 2022), contributing to poorer health and functioning (centers for disease control and prevention 2008). secondly, they have a higher prevalence of comorbidities and secondary conditions resulting from their impairment, such as diabetes, stroke and pressure sores (kuper & phyllis heydt 2019; who 2022). thirdly, people with disabilities are more susceptible to behavioural health risks (who 2011), such as physical inactivity (hollis et al. 2020), smoking (armour et al. 2007) and obesity (maïano et al. 2016). fourthly, people with disabilities commonly face barriers when seeking care, including unfavourable attitudes from health care professionals (adugna et al. 2020), high cost of medical care (dagnachew, meshesha & mekonen 2021) and inaccessible facilities (pinto et al. 2021). consequently, they often lack adequate access to both general and disability-specific health care and rehabilitation services (kuper & phyllis heydt 2019; who 2022), despite their greater health care needs (kuper & phyllis heydt 2019). as a result of these factors, people with disabilities face an elevated risk of morbidity and mortality compared to their non-disabled peers (lauer & mccallion 2015; park et al. 2017). there is growing evidence of a shorter life expectancy (le) for people with disabilities, including in lmics, which may be around 10–20 years (da roza et al. 2023; egüez-guevara & andrade 2015; keeler et al. 2010; ma et al. 2019; rotenberg, smythe & kuper 2023; ruffieux et al. 2023; zhan et al. 2023). this gap appears to vary based on impairment type, for instance, being particularly high in people with mental illness (28.4 years) (fekadu et al. 2015), functional impairments (16–20 years) (bahk, kang & khang 2019) and physical impairments (12.7–17.1 years). there is also variation across lmics (da roza et al. 2023; ma et al. 2019; moreno et al. 2019; scalfari et al. 2013), for instance, a review showed that le gaps for bipolar disorder were greater in africa (29 years) than in asia (12 years) (chan et al. 2022), and overall lmics exhibit higher le gaps by disability status (26.1 years) compared to upper-middle-income countries (14.6 years) (rotenberg et al. 2023). however, the le gap for people with disabilities has not yet been systematically reviewed in lmics, although le serves as a key indicator of health status, outcomes and quality of life (britain 2001), and a proxy for health equity (rotenberg et al. 2023). assessing le disparities between disabled and non-disabled individuals is important to raise public awareness of health inequities and help policymakers craft effective strategies to address health care needs and prevent avoidable mortality (chan et al. 2023; issifou & pewitt 2022). consequently, this systematic review and meta-analysis were undertaken to compare le among people with and without disabilities in lmics and estimate average years of life lost (yll). methods protocol and registration we searched several databases (e.g., cochrane library, joanna briggs institute [jbi] library and dare database) to prevent duplications for systematic reviews and meta-analyses on the subject being studied. the study protocol was registered with prospero – prospective register of systematic reviews and meta-analysis (crd42024499640) – and followed the preferred reporting items for systematic reviews and meta-analyses (prisma) reporting guidelines (online appendix, table 1-a1). searching strategies we used the population, intervention, comparator, outcome, timing, and study design (picot/s) framework to clarify the research parameters (table 1). table 1: picot/s framework for systematic review and meta-analysis on the link between life expectancy and disability in low and middle-income countries. we systematically searched six electronic databases: medline, embase, global health, scopus, web of science and cochrane library for studies on 03 march 2023. google and google scholar search engines assessed for grey literature and additional sources. in addition, the reference tracing of included studies was conducted and more eligible articles were obtained. the initial search was carried out in the medline database using the search strategy string (online appendix, table 2-a1). the search was conducted using keywords, vocabulary words and mesh (medical subject headings) terms related to disability, le and lmics (classified by the world bank group) (hamadeh et al. 2022). boolean operators (‘or’, ‘and’ and ‘not’) as well as truncations (*) were applied both individually and collectively. eligibility criteria for study inclusion we included published articles between 01 january 2005 and 03 october 2023, benchmarking the world health assembly resolution on universal health coverage in 2005 and the growing momentum advocating for the adoption of the united nations convention on the rights of persons with disabilities (uncrpd) in 2006 (guide 2014; latko et al. 2011). eligible studies had to fulfil the following criteria: (1) quantitative observational (cross-sectional, case-control, cohort) or interventional (trial) studies; (2) report and/or compare data on the mean or standard error of le (at birth or later) between people with and without disabilities of all ages; (3) undertaken in lmics (hamadeh et al. 2022); (4) published in english; and (5) disability assessed using the washington group module and/or other reliable and/or validated measures of disability (hanass-hancock et al. 2023). the review excluded records with no full text, editorials, review studies or qualitative research. studies without a clear measure of le were excluded. study outcome and explanatory variables the primary outcome of this review was the le of people with and without disabilities, measured as the average age at death, or yll, measured as the mean difference in le between people with disabilities and those without disabilities or the general population. other measures of le, such as subjective le or disability-free/healthy le, were not eligible. the le and yll were recorded by sex (male and female), where available. study screening and data extraction strategy after retrieving all records from the databases, we exported records to the bibliographic software, endnote version 20 reference manager, to remove the duplicate studies. then, the remaining studies were double-screened (dda and hk) using the rayyan app based on title and abstract against criteria to identify possibly eligible studies. full-text studies were evaluated to decide the inclusion of articles in the analysis. the disagreements in study screening were resolved through a consensus-based discussion. the joanna briggs institute (jbi) data extraction tool was applied to systematically extract and organise data, ensuring consistency and accuracy. all required data were independently extracted by two authors (dda and hk) and recorded in a microsoft excel spreadsheet. the data extraction protocol includes the first author’s name, publication year, study settings/country, study design, sample size, methods of analysis used, sex of respondents, age at which le was estimated and a measure of le (e.g. mean le, yll, a measure of effect where available (e.g., 95% confidence interval [ci], p-value), methods of calculating le and disability type. methods of assessing the outcomes this systematic review and meta-analysis reported le of people with disabilities and people without disabilities or the general population. if multiple reports of le at different set ages were available, the mean le for the longest duration of follow-up and at the youngest set age were selected. for studies with multiple le or yll estimates for different impairment types, we used one estimate per study after calculating the weighted average based on the number of participants for each impairment type. for studies that provided cis instead of standard deviations, we converted the cis to standard deviations for the meta-analysis. if studies did not report standard deviations for le/yll estimates, we employed multiple imputation methods using pooled effect sizes from other studies included in the meta-analysis (furukawa et al. 2006). quality assessment of included studies the quality of the included studies was evaluated using the jbi critical appraisal checklist (online appendix, table 3-a1) (barker et al. 2024). the jbi checklist contains 11 parameters that were listed from ‘participant ascertainment’ to ‘the appropriateness of the statistical analysis’. two reviewers independently (dda and hk) assessed the quality of the included studies. disagreements among reviewers were resolved through discussion. finally, studies with an overall quality appraisal score of ≥ 5 were included in the review. data analysis and presentation we extracted the data and exported it to r 4.3.3 statistical software (the r project for statistical computing, auckland, north island, new zealand) for further analysis. a random-effects model (restricted maximum likelihood methods) was employed in this meta-analysis to obtain pooled effect estimates, summarised as average le for people with and without disabilities or the general population, and the yll, with 95% cis (borenstein et al. 2010). the heterogeneity between the included articles was computed and checked using cochrane q test statistic (chi-square), i2 index and p-values. the heterogeneity was classified as low (25%), moderate (50%) or high (75%) based on the results of the i2 test (higgins et al. 2003). meta-regression and sub-group analyses (considering sex, age group and disability type) were performed respectively, using a random-effect model to investigate the sources of heterogeneity. a sensitivity analysis was conducted to assess the impact of a single study on the overall estimation of meta-analysis. univariable and multi-variable meta-regression analyses were performed to identify how much each study characteristic contributed to the heterogeneity in estimating the pooled yll estimates. the multivariable meta-regression analysis included all potential moderators in the final model. this analysis aimed to measure the extent to which all moderators included in the final model explained the observed true heterogeneity (r2) and the remaining unexplained or residual heterogeneity (i2) and to assess if the model adequately explained the observed variability (qm). forest plots were computed to visualise the presence of heterogeneity among studies. a meta-cumulative analysis was conducted to examine the pattern of effects and the significance of cumulative effects over the publication years. the publication bias was assessed objectively using egger’s regression and begg’s test (begg & mazumdar 1994; egger et al. 1997), and subjectively by observing the funnel plot. a p-value of less than or equal to 0.05 was considered statistically significant. review findings search results out of the initial 8476 articles retrieved on le and disability status, 2400 records were excluded because of duplications, leaving 6089 articles for title and abstract screening. then, 56 studies were selected for full-text screening; 44 studies were excluded (online appendix, table 4-a1) leaving 12 articles that fulfilled the eligibility criteria and were included in the analysis (figure 1). figure 1: prisma flow chart. characteristics of the included studies this study extracted and analysed data from the 12 eligible studies. sample sizes of the included studies ranged from 510 (ran et al. 2020) to 1 359 812 (zhan et al. 2023) participants. in terms of regional distribution, eight studies were conducted in asia (six from china, one each from india and mongolia), two in south america (both from brazil) and two in africa (ethiopia and south africa). all studies employed a longitudinal observational study design and were published between the years 2015 and 2023. in the included studies, participants were identified from death registers, health care records, health insurance databases, disability registers and study cohorts. most included studies (n = 11) used the international classification of diseases (icd) criteria for diagnosing or measuring disability. the follow-up duration varied from 2 to 24 years. in the included studies, various impairment types were evaluated, including psychosocial (n = 7), cognitive (n = 2), neurological disorders (n = 2) and multiple disabilities (n = 1) (online appendix, table 5-a1). approximately nine studies reported the average le and the le gaps concurrently (table 2). table 2: characteristics of included studies. in terms of le estimation methods, five studies used life table methods, three employed chiang’s method and the remainder used other approaches (table 3). the ages at which le was derived varied: about six studies used age at birth, while the other studies used different set ages (e.g. 20, 60 years). the mean le differed between people with disabilities and the reference population (e.g. total population, individuals without disabilities), ranging from 47.27 to 89.34 years and from 55.6 to 80.2 years, respectively. the yll (or le gaps) also varied between 2.19 and 28.4 years. table 3: key results. quality appraisal the quality scores of the included studies ranged from 7 to 11 (maximum 11 points – showing lowest possible risk of bias). thus, all included studies were of medium to high quality, and none were rated as low (online appendix, table 3-a1). meta-analysis the mean life expectancy in people with and without disabilities nine studies reported le in people with disabilities and eight in people without disabilities. the analysis estimated the average le of people with disabilities to be 57.98 (95% ci: 53.4–62.95) years. there was significant variability in the data (i2 = 100%, p < 0.001), indicating a high level of heterogeneity; as a result, a random effect model was employed. for people without disabilities, the average le was 70.86 (95% ci: 64.06–78.39), again with a high heterogeneity among studies (i2 = 100%, p < 0.001) (figure 2). people with disabilities experienced a substantially lower mean le compared to those without disabilities (-13.29 years; 95% ci: -21.58 to -5.0; p = 0.002) (online appendix, figure 1-a1). figure 2: forest plot showing the life expectancy among people with and without disabilities. mean years of life lost eight studies presented yll, and for the remaining four, this estimate was calculated as the mean difference in le between people with and without disabilities. the weighted average yll was 15.84 years (95% ci: 11.1–22.61; i2 = 99.8%, p < 0.001), encompassing a predictive interval from 3.83 to 65.61 years (figure 3). it appeared that yll was higher for men with disabilities (16.33; 95% ci: 11.49–23.21 years) compared with women with disabilities (13.70; 95% ci: 8.45–22.22) although this difference was not statistically significant (t = 392; p = 0.69) (online appendix, figure 2-a1). figure 3: forest plot showing the years of life lost in people with disabilities. publication bias and sensitivity analysis for mean years of life lost: the funnel plot displayed an asymmetrical distribution graphically, but the results of the egger regression test (p = 0.79) and the begg and mazumdar test (p = 1.0) did not reach statistical significance, indicating the absence of small study effects. the trim-and-fill analysis identified and included two additional studies to address any potential oversights after examining the funnel plot and resulted in a pooled yll estimate of 14.51 (95% ci: 10.5–20.03), with an overlap of cis indicating a lack of statistically significant difference (online appendix, figure 3-a1). a leave-one-out meta-analysis using the reml (restricted maximum likelihood) method was conducted to assess the influence of each study on the overall results. no indicated outliers confirmed robust and consistent results without single-study effects. weighted mean differences in years of life lost by gender: there was a higher level of heterogeneity in the meta-analysis when assessing the mean difference in yll between disabled male and female participants (i2 = 96.8%, p < 0.001). with a random-effects model applied, the mean difference of yll in male versus female participants was estimated to be 0.42 (95% ci: -0.56 to 1.40) (p = 0.40), showing a lack of statistically significant difference in yll by disability status between male and female participants (figure 4). figure 4: forest plot showing the mean difference of years of life lost between men and women with disabilities. sub-group analysis in the weighted mean of years of life lost: the sub-group analyses were performed for different factors to identify the variation in yll across included studies. only the analysis stratified by who region revealed a statistically significant variation, as there were greater mean yll observed in the region of the americas at 26.06 years (95% ci:18.48–36.7) compared to the western pacific region at 17.2 years (95% ci:14.48–20.46) (z = 7.91, p = 0.048). other variables, such as publication year, number of disabilities, risk of bias, study settings, disability type and follow-up duration, did not show significant heterogeneity in the pooled yll between people with disabilities and the general population in the sub-group analysis (online appendix, table 6-a1). meta-regression of the weighted mean of years of life lost: in the univariable meta-regression analysis, we fitted the characteristics including publication year (qm = 0.54, p = 0.46), who region (qm = 2.24, p = 0.52), length of study follow-up (qm = 0.35, p = 0.55), risk of bias (qm = 0.87, p = 0.35), study settings (qm = 0.97, p = 0.32), disability type (qm = 0.019, p = 0.99) and number of people with disabilities (qm = 0.74, p = 0.39), none of which showed statistically significant association with mean yll. conversely, two characteristics showed significant associations with the weighted mean of yll estimates in people with disabilities: method of le estimation (qm = 34.74; p < 0.0001) and source of data (qm = 57.69, p < 0.0001) (online appendix, table 7-a1). after multivariable adjustment of the above characteristics, the meta-regression, which accounted for all potential moderators, explained 76.03% (qm = 42.06; p < 0.0001) of the variability in yll (online appendix, table 8-a1). discussion summary of key review findings this systematic review and meta-analysis analysed 12 studies that provided quantitative data on le and yll among people with and without disabilities in lmics. the findings revealed that across 9 studies, the average le was lower in people with disabilities (57.98 years) compared to people without disabilities (70.86 years), and across all 12 studies, the yll was approximately 16 years. there was no clear difference in le between men and women with disabilities. overall, there was no evidence of publication bias influencing the link between disability and yll, and the individual studies showed a low risk of bias. the review also highlighted that no single study disproportionately influenced the collective estimation derived from the meta-analysis, suggesting a fair and equitable contribution from each study. however, sub-group analysis by data sources revealed significant differences in le estimates, particularly larger effect size estimates from household surveys. comparability with existing studies previous studies show that people with disabilities have a higher mortality rate and consequently are more likely to die at earlier ages compared to those without disabilities (kuper et al. 2024; smythe & kuper 2024), aligning with our review. this gap arises through multiple pathways including greater poverty and marginalisation of people with disabilities and consequently poorer social determinants of health, higher risk of secondary health conditions or life-limiting conditions (garcia-arguello et al. 2017) and treatment side effects (e.g., metabolic syndrome caused by antipsychotics) (de hert et al. 2012; leung et al. 2012) or the presence of life-limiting conditions, stigma and lower health care utilisation and treatment adherence (clement et al. 2015; corrigan, druss & perlick 2014; kuper & phyllis heydt 2019; who 2022). this stark le gap highlights the critical need to develop disability-inclusive health system. the le gap in people with disabilities was also comparable with meta-analyses of yll among people with psychosocial impairments (chan et al. 2023; hjorthøj et al. 2017) and across different countries globally (laursen et al. 2013; pan et al. 2020; ren et al. 2023). our findings also converge with global evidence, indicating a 10–20 years le gap for people with disabilities, irrespective of location or type of impairment (kuper et al. 2024). yet, yll in this study was higher than those meta-analyses conducted globally on bipolar disorder (chan et al. 2022; jayatilleke et al. 2017) and lower than findings from other studies (laursen 2011; laursen et al. 2013, 2016; ren et al. 2023; rotenberg et al. 2023; weye et al. 2020). the differences between these studies may be because of variations in their study populations (e.g., disability type), regional differences (e.g., disparities in healthcare access, policy, socio-economic factors and lifestyle), temporal changes (e.g., improved health access over time) or differences in definition/inclusion of disability in the studies (laursen 2011; laursen et al. 2013). there was no difference in yll between men and women with disabilities in this study, in contrast to the findings of previous meta-analyses (chan et al. 2022, 2023; hjorthøj et al. 2017) and other primary studies (erlangsen et al. 2017; jayatilleke et al. 2017; kessing, vradi & andersen 2015; laursen 2011; moreno-küstner et al. 2021; ren et al. 2023). this difference could be attributed to multiple factors. firstly, equitable health care access and improved social support systems may have reduced gender disparities seen in other contexts, where women often face greater barriers (chan et al. 2023; who 2011). secondly, differences in disability type and comorbidity profiles in our reviews may have minimised variability between genders, as some conditions affect men and women similarly (thakral, lacroix & molton 2019). thirdly, prior studies highlighting gender differences often emphasised regions or populations with distinct risk factors, such as higher male mortality from risk-taking behaviours or poorer health-seeking behaviours (erlangsen et al. 2017; jayatilleke et al. 2017). fourthly, methodological differences, such as smaller sample sizes in earlier studies, may have exaggerated disparities (hjorthøj et al. 2017; laursen 2011). finally, historical contexts reflected in meta-analyses and older studies may no longer align with current trends because of evolving social and health care landscapes (moreno-küstner et al. 2021; shi 2015). strengths and limitations of the study this is the first systematic review of the link between disability and le in lmics. our approach was characterised by rigorous methodologies, including the pre-registration of protocols, adherence to prisma guidelines for systematic reviews, extensive searches conducted across multiple databases and the implementation of dual assessments at every stage of the review process. while our search strategy did not include studies from grey literature, there was little evidence that publication bias influenced the summary of this meta-analysis. the overall quality of the included studies was high, and the risk of bias did not significantly affect the association between disability and le/yll. however, this meta-analysis is not without limitations. our literature search for english language publications may have caused us to miss important studies. all the studies, except for one, focussed on people with psychiatric or neurological conditions which could limit the generalisability of the findings (e.g., psychotropic medication may have impacts on le). over half of the studies were from china, and data were missing from two who regions, suggesting that the studies in our review might not fully represent all lmics, potentially limiting the generalisability of our findings. we could not carry out stratified analyses by disability type and across countries because of few eligible studies, overlooking significant variations between different subpopulations of people with disabilities. moreover, all but one of the included studies used biomedical measures of disability based on icd criteria despite the importance of measuring functioning including physical, sensory and psychosocial functioning. we did not consider the severity of disability and so could not assess the presence of a dose-response relationship with le. most of the included studies relied on health system records not initially intended for research and may have missed important factors. furthermore, a few studies faced challenges in finding an appropriate comparison group, whether among individuals with disabilities or the general population. there was high heterogeneity in the meta-analysis for le and yll, likely because of limited reporting of characteristics, as meta-regression could not fully account for variability, suggesting other unknown factors. implications for research, policy and practice our study highlights that individuals with disabilities experience a marked reduction in le. this underscores the pressing need for policy reforms aimed at providing inclusive health care services and addressing social determinants of health, particularly in lmics. therefore, it is imperative for the global disability community to advocate for affordable and inclusive health care systems that can improve the well-being, quality of life and societal integration of people with disabilities. there are also implications for research. there is a need for more consistent promotion of the bio-psycho-social model of disability view with assessment of disability through functional differences, and production of disaggregated data by disability type, as underlined in the uncrpd declaration. overall, we only identified 12 studies on this important topic, showing that more evidence is needed, including on the gap between male and female individuals with disabilities. conclusion disability substantially reduced le in lmics. this inequity in yll shows that health systems are failing to provide inclusive services, and therefore, interventions are needed to promote disability-inclusive health care aligned with global health targets. moreover, this disparity in the shorter le of people with disabilities highlighted the need for targeted policy interventions and focussed research efforts across disability types, sex and global regions. by addressing these disparities through inclusive policies and robust research, it is possible to improve health outcomes and extend the le of people with disabilities, thereby promoting equity and social justice. acknowledgements the authors would like to express their gratitude to russell burke and kathleen perris (assistant librarian – info services) for their support with this systematic review and meta-analysis. they are also grateful to mr. abebaw gedif for his assistance with r statistical software during the analysis. competing interests the author d.d.a. reported that he received funding from the younger family fund under the missing billion project in uganda which may be affected by the research reported in the enclosed publication. he has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions d.d.a., h.k. and f.b.m. conceived the study. d.d.a. designed a search strategy, executed the search, and drafted and revised the article. d.d.a. and h.k. screened the titles and full texts of the studies and also handled data extraction and risk of bias assessment. h.k., f.b.m. and m.y.m. critically reviewed the article. all authors contributed intellectually, reviewed critically and approved the final article prior to submission. funding information the author d.d.a. was funded for his phd by the younger family fund under the missing billion project in uganda. however, the funders did not influence the study design, data analysis, interpretation or writing of the article. data availability the protocol for this systematic review is available in prospero under the number crd42024499640. the data sets generated and analysed during the current review can be obtained from the corresponding author d.d.a. upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references adugna, m.b., nabbouh, f., shehata, s. & ghahari, s., 2020, ‘barriers and facilitators to healthcare access for children with disabilities in low and middle income sub-saharan african countries: a scoping review’, bmc health services research 20, 1–11. https://doi.org/10.1186/s12913-019-4822-6 andrade, f.c.d., corona, l.p. & de oliveira duarte, y.a., 2019. 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https://doi.org/10.1016/s2214-109x(24)00042-1 thakral, m., lacroix, a.z. & molton, i.r., 2019, ‘sex/gender disparities in health outcomes of individuals with long-term disabling conditions’, rehabilitation psychology 64(4), 221–228. https://doi.org/10.1037/rep0000248 weye, n., momen, n.c., christensen, m.k., iburg, k.m., dalsgaard, s., laursen, t.m. et al., 2020, ‘association of specific mental disorders with premature mortality in the danish population using alternative measurement methods’, jama network open 3(6), e206646. https://doi.org/10.1001/jamanetworkopen.2020.6646 world health organization (who), 2011, world report on disability 2011, world health organization, geneva. world health organization (who), 2015, world report on ageing and health, world health organization, geneva. world health organization (who), 2022, global report on health equity for persons with disabilities, world health organization, geneva. wu, j., wang, y., wang, l., wu, h., li, j. & zhang, l., 2023, ‘trends and burden in mental disorder death in china from 2009 to 2019: a nationwide longitudinal study’, frontiers in psychiatry 14, 1169502. zhan, p., li, d., zhang, x. & bai, x. 2023, ‘the average life expectancy of persons with disabilities in china’, ssm-population health 24, 101526. https://doi.org/10.1016/j.ssmph.2023.101526 introduction an overview of the articles published on this special issue closing remarks references about the author(s) chioma ohajunwa centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa callista kahonde centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa arne h. eide sintef technology and society, oslo, norway lieketseng ned centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation ohajunwa, c., kahonde, c., eide, a.h. & ned, l., 2022, ‘disability unplugged: what really matters to people with disabilities?’, african journal of disability 11(0), a1172. https://doi.org/10.4102/ajod.v11i0.1172 editorial disability unplugged: what really matters to people with disabilities? chioma ohajunwa, callista kahonde, arne h. eide, lieketseng ned copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction this special issue presents selected articles that were presented at the sixth african network for evidence-to-action in disability (afrinead) virtual conference in december 2020. the conference space always affords a reflective space on how far we have come in our quest to drive translation of disability evidence to action. the conference was themed ‘disability unplugged – beyond conventions and charters, what really matters to persons with disabilities in africa’. the theme promoted the presentation of research and community articles as well as a dialogue on issues impacting the day-to-day lives of persons with disabilities beyond the rhetoric of policies and conventions. the articles in this special issue strove to achieve this goal. the special issue attempted to be inclusive and representative of all the seven conference streams, which can be viewed at https://blogs.sun.ac.za/afrinead/files/2022/05/updated-programme-booklet-2.pdf. a combination of keynote speakers and plenary speakers were approached to submit articles. initially, a total of 16 articles were expected to be part of this issue; however, not all approached authors were able to submit their articles. all contributions followed a rigorous, blinded peer review process before consideration for publication. there were 11 articles reviewed in total for this special issue, and 10 of them were accepted for publication after going through the peer review process. the editorial team is therefore delighted to present this special issue comprising the 10 articles (inclusive of original research and opinion articles) that were selected for inclusion. these articles, combined, reflect diversity of research perspectives following the theme of the conference – what really matters to persons with disabilities in africa? an overview of the articles published on this special issue the first article, written by luger et al., presents the 9.5 years’ work performed by chaeli campaign’s journal club, informed by a first-person action research approach. the journal club is aimed at strengthening evidence-based practice and contributing to practice-based evidence for children and youth with disabilities in under-resourced south african communities. the authors share their experience of supporting therapists and other community practitioners from under-resourced areas to learn the importance of identifying, evaluating, reading and engaging with available research evidence in a critical manner to inform their practice. in addition, the therapists and community practitioners equally learn how to ethically research, write up and present the interventions they apply at the grassroots level, contributing to a bottom-up and top-down two-way approach of knowledge creation. this rounded approach contributes to locally applicable practice-based evidence, which can influence and encourage other teams to start interdisciplinary journal clubs to support this two-way practice-based evidence. the second article is written by ohajunwa, in which the author discusses the outcomes of a study where national inclusive education policies from three countries (south africa, ghana and uganda) were analysed regarding the inclusion of relevant local knowledge within these policies. informed by a critical, interpretive and constructivist lens, data were gathered through a desktop review of relevant policies and individual key informant interviews. the study revealed a need for more inclusion of local knowledge within inclusive education policies within these contexts. participants reiterated that the inclusion of local knowledge would better support the implementation of these policies, as there would be increased cohesion between knowledge at home and knowledge in school. learners with disabilities exist within communities that propagate certain worldviews and ways of being. having inclusive education policy documents that are responsive to these worldviews, rather than alienating learners, would support more inclusive and sustainable learning outcomes for learners with disabilities. the third article, authored by le roux, discusses the key considerations for facilitating disability-inclusive frameworks that support access to equal opportunities for youth with disabilities in post-apartheid south africa. informed by the philosophical frameworks of ubuntu, ethics of care and intersectionality, the author draws from an analysis of the experiences of youth from low socio-economic backgrounds who attended a programme at artscape, in order to explore the attributes of disability inclusion within a post-apartheid south africa. the author argues that even when they cannot speak, youth with disabilities carry an embodied sense of who they are, which must be acknowledged and respected. other challenges identified include inadequate physical, technological, social and financial resources and the unaddressed, lingering impact of an apartheid history that continues to negatively impact on their communities. three main factors that influence access to equal opportunities for these youths emanated from the study. these are enhancement of personal capacity, agency and skills development for youth with disabilities. the author argues that supporting and empowering families to inform sustainable change and effecting systemic and structural changes could facilitate inclusive societies for youth with disabilities. the fourth article is authored by vergunst and mckenzie, in which they present a general overview of the work being carried out within the including disability in education in africa (idea) research unit at the university of cape town in south africa. in the article, authors highlight that although education is a fundamental right of every child, access to this right is still very much a problem in the global south. according to the united nations educational, scientific and cultural organization (unesco), less than 10% of children with disabilities in africa are in school. the idea research unit is aligned to a broad vision of inclusive education, informed by a disability studies in education (dse) approach, positioning disability as a political and social phenomenon, ensuring the voice of people with disabilities and their families are foundational to any related outcomes. the research unit’s focus is to provide expert and comprehensive research to inform the paucity of knowledge and decision-making related to disability in education. this is aimed at enhancing the education of children with disabilities and their communities within the context of inclusive educational systems. in a fifth article, written by hartley et al., the authors report the outcomes of a longitudinal observational study that was conducted at a rehabilitation centre in the western cape, south africa. the study was focused on a correlation of self-reported health-related quality of life (hrqol) with activities of daily living (adl) and stroke severity. stroke is the third leading cause of disability, and statistics show a global projection of 20 million annual stroke-related deaths and 70 million stroke survivors globally by 2030. of these, 80% of strokes occur in lowto middle-income countries, with an increased incidence of stroke occurring among younger people in lowto middle-income countries than high-income countries. sub-saharan africa is particularly impacted by this trend. a poststroke survival leaves a heavy financial burden, and it could take years for recovery to happen, with many people not regaining full function. the authors argue that it is critical to support stroke survivors psychologically, emotionally, socially and physically to have a positive perception of their quality of life to inform their well-being. in the sixth article, written by visagie et al., the authors present the outcomes of a round-table and small-group discussions on assistive technology. the workshop on collaboration, cohesion and coherence in assistive technology services (ats) delivery in africa was part of the afrinead. the authors discuss successful ats delivery strategies globally and in africa, stating that although there are some very innovative ats delivery strategies in africa, very little is known about these strategies. despite the presence of various upstream regional and international ats initiatives, challenges exist. the challenges are linked to policymaking and implementation; inadequate assistive product (ap) provision; poor access to aps and limited data; and uncoordinated and fragmented services, all of which remain very real, daily challenges within the continent. the dominating influence of western biomedical models over african community approaches, which undermines the capacity of localised services, is raised as a concern. the authors highlight the relevance of end users and communities partnering in ats delivery and reiterate the importance of research-informed ats strategies that emanate from the continent, contributing to population health and wellness. the seventh article, authored by sadiki, discusses the pivotal role of family in the life of a person with a disability, from the perspective of the author who herself is the mother of a child with a disability, having raised the child in a rural south african context. the author brings up the right of persons with disabilities and their families to equal protection and assistance to enjoy their full rights on an equal basis with others. this is because families and caregivers often provide lifelong support at different levels for the person with a disability. the relevance of early diagnosis and intervention, provision of counselling at the grassroots level within rural communities, working collaboratively with parents to educate them on their rights and building agency aimed at advocacy were highlighted as key areas of focus. focusing on these areas is identified in the article as imperative to better empower parents and caregivers to continue supporting their family member with a disability. the eighth article, authored by van rensburg-welling and mitchell, responds to the challenges faced by training organisations related to lack of training models that accommodate the demands of all learners with disabilities. informed by a conducted literature review and data from semistructured interviews, the authors propose the adaptable component-based assessment model (aca) as a potential training model for students with disabilities, which could be assessed to ensure that it is integrated, holistic and student-centred. they argue that the aca model is an appropriate assessment model as it is based on individual learner affordances, workplace affordances, the holistic development of students and workplace absorption. the ninth article, authored by gibberd and hankwebe, shares transport experiences of people with disabilities during learnerships. these data were retrieved from an evaluative (complaints) questionnaire run by the department of transport. while students with disabilities experience challenges related to inaccessible transport, there also seem to be evident tensions between the stipend received versus the transport costs incurred. these shape the participation and, ultimately, completion of learnerships. the tenth article, authored by ned, dube and swartz, synthesises three keynote presentations delivered at the conference on ‘research evidence’. the focus is particularly on the challenges and opportunities of centring african voices in disability research. the authors argue that the challenges in disability research demand critical scholarship and dedicated activism that help us avoid reproduction and reinforcement of exclusionary practices confronting people with disabilities in africa. closing remarks it is our hope that we will see more presentations from the afrinead conference being translated into publication outputs in the near future in order to build african scholarship. we were delighted that, despite coronavirus disease 2019 (covid-19), this conference was successfully tabled virtually. references gibberd, a.e. & hankwebe, n., 2022, ‘transport experiences of people with disabilities during learnerships’, african journal of disability 11(0), a936. https://doi.org/10.4102/ajod.v11i0.936 hartley, t., burger, m. & inglis-jassiem, g., 2022, ‘post stroke health-related quality of life, stroke severity and function: a longitudinal cohort study’, african journal of disability 11(0), a947. https://doi.org/10.4102/ajod.v11i0.947 janse van rensburg-welling, j.c. & mitchell, j.e., 2022, ‘the development of a suitable training model for students with disabilities at a training institution in south africa’, african journal of disability 11(0), a949. https://doi.org/10.4102/ajod.v11i0.949 le roux, m.f., 2022, ‘key considerations for an inclusive framework for youth with disabilities in post-apartheid south africa’, african journal of disability 11(0), a954. https://doi.org/10.4102/ajod.v11i0.954 luger, r., geiger, m., nqevu, o., bullen, a. & toefy, f., 2022, ‘the chaeli campaign journal club: strengthening evidence-based practice and contributing to practicebased evidence in under-resourced south african communities’, african journal of disability 11(0), a943. https://doi.org/10.4102/ajod.v11i0.943 ned, l.y., dube, k. & swartz, l., 2022, ‘challenges and opportunities of centring the african voice in disability research’, african journal of disability 11(0), a1089. https://doi.org/10.4102/ajod.v11i0.1089 ohajunwa, c.o., 2022, ‘local knowledge in inclusive education policies in africa: informing sustainable outcomes’, african journal of disability 11(0), a941. https://doi.org/10.4102/ajod.v11i0.941 sadiki, m.c., 2022, ‘parenting a child with disability in rural south africa: navigating the healthcare system’, african journal of disability 11(0), a942. https://doi.org/10.4102/ajod.v11i0.942 vergunst, r. & mckenzie, j., 2022, ‘introducing the including disability in education in africa research unit at the university of cape town’, african journal of disability 11(0), a946. https://doi.org/10.4102/ajod.v11i0.946 visagie, s.j., maclachlan, m., scheffler, e. & seymour, n., 2022, ‘promoting regional coherence and cohesion amidst multiple assistive technology initiatives in africa’, african journal of disability 11(0), a937. https://doi.org/10.4102/ajod.v11i0.937 article information authors: julie abimanyi-ochom1 hasheem mannan2 affiliations: 1deakin health economics, population health src, deakin university, australia2nossal institute for global health, the university of melbourne, australia correspondence to: julie abimanyi-ochom postal address: deakin health economics, building bc, deakin university, 221 burwood highway, burwood 3125, victoria, australia dates: received: 18 dec. 2013 accepted: 01 aug. 2014 published: 25 nov. 2014 how to cite this article: abimanyi-ochom, j. & mannan, h., 2014, ‘uganda’s disability journey: progress and challenges’, african journal of disability 3(1), art. #108, 6 pages. http://dx.doi.org/10.4102/ ajod.v3i1.108 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. uganda’s disability journey: progress and challenges in this original research... open access • introduction    • progress to date    • review of challenges in uganda’s disability journey    • comparison with global trends • conclusion • acknowledgements    • competing interests    • authors’ contributions • references • footnote introduction top ↑ the international classification of functioning, disability and health (icf) defines disability as a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives (world health organization [who] 2002:2). based on the icf definition of disability, over a billion people worldwide and 19% of the ugandan population are estimated to have some form of disability (uganda bureau of statistics and icf international 2012:27; world health organization & world bank 2011:ix). the prevalence of disability is predicated to increase in the future due to ageing populations and an increase in chronic health conditions hence the need to urgently deal with global disability (world health organization & world bank 2011:ix).uganda has been praised as one of the champions in sub-saharan africa for advocating for the rights of persons with disabilities (katsui & kumpuvuori 2008; lang & murangira 2009:18–24), with their rights incorporated in the national legal framework. this includes the 1995 constitution which recognises the rights of persons with disabilities to attain full mental and physical potential as well as development of the 2006 national policy on disability. several laws have been established in the national legal framework to advocate for the rights of people with disabilities (pwds) as highlighted below: • the 1996 children’s statute for early assessment of disabilities amongst children to achieve early treatment, rehabilitation and education. • the parliamentary elections statute of 1996 established five positions in parliament of which one of them must be a woman, and recognised the use of sign language for the deaf in parliament (international labour organization [ilo] 2004:6; republic of uganda 2006:12). • the 1997 local government act that established representation of pwds at all local government levels for both males and females. • the 1997 uganda communication act for the development of techniques and technologies to ensure communication services for pwds and the 1997 universal primary education act which demands families to give cwds priority at enrolment. • the 1998 unise act, for the establishment of the uganda national institute of education (unise) for special teacher training for children with disabilities (cwds). • others include the special allocation of university scholarships for persons with disabilities through affirmative action and the right to assets including land (hanass-hancock & nixon 2009; katsui & kumpuvuori 2008; lang & murangira 2009:17; republic of uganda 2006:11–12). internationally, uganda is a signatory to several international pieces of legislation advocating for the rights of persons with disabilities including the 2008 united nations convention on the rights of persons with disabilities and 1983 international labour organisation convention on vocational rehabilitation and employment of disabled persons (ilo 2004:8; lang & murangira 2009:5). progress to date the practical enactment of the aforementioned laws include the election of pwds at all levels of political life from the village to parliament, making uganda one of the countries with the highest numbers of elected representatives with a disability in the world (world health organization & world bank 2011:171). also, unise, an institute of higher learning with specialised programmes to address professional teacher development was established in 1991 by the government of uganda (ilo 2004:10; kyambogo university 2014). unise trains teachers and community workers to support and work with pwds including children with disabilities (ilo 2004:10; kyambogo university 2014).uganda’s commitment to providing education to children with disabilities dates back to a modest start in 1983 when a one-staff section for special needs education was established in the ministry of education. in 1987 the government established the ‘kajubi commission’ to review the entire education sector, and its report of 1989 emphasised the need for government to prioritise special needs education a recommendation which was adopted in the 1992 government white paper on education. according to the ministry of education and sports, in 2008, there were 183 537 learners with disability in primary schools countrywide, and 11 145 learners in secondary schools countrywide (foundation for human rights initiative 2009). uganda’s initial report to the committee on the united nations convention on the rights of persons with disabilities (uncrpd 2010) reports that: all government programs for promoting education – universal primary education (upe), universal secondary education (use) and business and vocational technical training are all embedded with affirmative action for learners with disabilities. the business, technical, vocational education and training (btvet) act, no. 12 of 2008, promotes equitable access to education and training for all disadvantaged groups, including disabled people. uganda promotes both inclusive education and special needs education where it is needed, all the 21 000 schools in uganda practice inclusive education by admitting learners with special education needs. (p. 35) in addition, uganda has a strong training focus on community based rehabilitation (cbr) programmes, established in 1992 under the ministry of gender, labour and social development with assistance from the norwegian association of the disabled (nad). cbr follows who strategy for involving pwds in developing their communities through equal access to community resources including health, education, rehabilitation and employment, and ensure social inclusion of pwds. a five year national cbr strategic plan 2002–2007 was developed to fully integrate pwds into the community and ensure equal opportunities for pwds. therefore, pwds and local communities have been empowered to manage disabilities, identify children with special needs and increase access to education facilities; for example, through the alternative basic education for karamoja (abek) programme (ilo 2004:9–10; norwegian agency for development cooperation [norad] 2011:110). through the cbr programme, 80% of the pwds are helped within the community whilst the rest require specialist services. cbr programme uses a multisectoral approach and the main activities include capacity building, economic empowerment, increasing disability awareness, disability management and home based care (claussen, kandyomunda & jareg 2005; norad 2011:87). the disability movement in uganda has been spearheaded by the national union of disabled persons uganda (nudipu), established in 1987. nudipu represents all disability groups in uganda including women with an objective of advocating for equal opportunities and involvement of pwds in policy development and implementation of programmes addressing disability. this is usually in collaboration with other stakeholders including government and ngos (ilo 2004:12); for example, pwds have been involved in the third phase of the poverty reduction strategy papers/poverty eradication action plan (prsps/peap) process which is important for inclusion of prodisability poverty alleviation strategies (dube 2005:28; norad 2012:33). likewise, female-specific disability groups managed by women were established including the national union of women with disabilities of uganda (nuwodu) and the disabled women network and resource organisation (dwnro). the groups train women and advocate for economic empowerment of women with disabilities including access to micro-credit programmes (ilo 2004:12). nudipu has been internationally active within the east african region providing advice to disability groups in countries affected by war including somalia, sudan, rwanda and the democratic republic of congo (lang & murangira 2009:25). comparable to other developing countries, uganda lacks disability data for monitoring and evaluating disability interventions’ policy. the uganda demographic and health surveys (udhs) funded by usaid has been used as an alternative avenue through which data on disability can be improved especially with the recent inclusion of the washington group’s short set of six questions on disability (madans, loeb & altman 2011; uganda bureau of statistics and icf international 2012:7). the udhs is a population sample survey undertaken every four years for monitoring and impact evaluation of population, health, hiv and/or aids and nutrition programmes (measure dhs 2014). the inclusion of disability question in the 2011 udhs provides opportunities for good data collection and more regular reporting which makes benchmarking disability progress possible. this is important in improving disability data including attainment of consistency in its measurement. furthermore, it is essential for international comparison with other developing countries that also include these questions (mitra 2013; world bank 2009). uganda’s commitment to disability is also evidenced through the introduction of programmes targeted at improving socio-economic opportunities of vulnerable populations including pwds. this includes the special disability grant to support socio-economic development and employment opportunities for pwds in districts estimated at 12 000 usd per annum (norad 2012). the social assistance grants for empowerment (sage), a pilot social cash transfer scheme is another similar programme under the ugandan government’s expanding social protection programs (espp). the programme addresses chronic poverty and aims at improving access to health care, education and other key services for chronically poor people. the evaluation of sage revealed that eligible households had a higher proportion of people defined as chronically ill or disabled than noneligible households, with 33% of eligible households containing a chronically ill or disabled member (oxford policy management, economic policy research centre & neema 2013:14–15). review of challenges in uganda’s disability journey uganda joined the global community in rallying together to ensure the improvement of conditions for disadvantaged people in the world through the mdgs. however, none of the eight mdgs, mdg targets indicators or millennium declaration mention people with disabilities despite the fact that persons with disabilities lack equitable access to resources including health, education, work and social and legal systems globally (chataika et al. 2011; republic of uganda 2006; united nations 2011; world health organization & world bank 2011; yousafzai et al. 2005). such barriers lead to poor economic participation and worse educational outcomes for pwds, making them more vulnerable (lang & murangira 2009; mitra & sambamoorthi 2013; united nations 2011; world bank 2009; world health organization & world bank 2011). the exclusion of persons with disabilities in mdgs represent a lost opportunity to tackle the social, educational, health and economic problems faced by marginalised persons with disabilities. there is a growing opinion that the mdgs will not be realised unless persons with disabilities are included (united nations 2011). as a result, there is a push to seek disaggregated disability data for each of the post-2015 mdgs (united nations 2011, 2013). such reports will present an opportunity to monitor the progressive realisation of the rights of pwds globally.similar to uganda, there is evidence of data related challenges globally (mitra 2013; world health organization & world bank 2011): ‘appropriate statistical and research data needs to be collected at both country and international levels to assist the crpd formulate and implement policies to achieve internationally agreed development goals’. this calls for improvement of data at both the national and international level in order to capture all aspects of disability including contextual factors to give a complete picture of disability and functioning. it is advised to disaggregate data further by gender, age, income or occupation to uncover trends, patterns and other information about ‘subgroups’ of people experiencing disability. furthermore, setting international standards on data and using standardised questions can improve harmonisation and ensure comparison with other countries (mitra 2013; world health organization & world bank 2011). therefore, data collected at the national level need to be relevant and comparable at the global level, possibly by basing design on international standards, for example, the international classification of functioning, disability and health or icf (mitra 2013; world health organization & world bank 2011). comparison with global trends uganda joined the global community in rallying together to ensure the improvement of conditions for disadvantaged people in the world through the mdgs. however, none of the eight mdgs, mdg targets indicators or millennium declaration mention people with disabilities despite the fact that persons with disabilities lack equitable access to resources including health, education, work and social and legal systems globally (chataika et al. 2011; republic of uganda 2006; united nations 2011; world health organization & world bank 2011; yousafzai et al. 2005). such barriers lead to poor economic participation and worse educational outcomes for pwds, making them more vulnerable (lang & murangira 2009; mitra & sambamoorthi 2013; united nations 2011; world bank 2009; world health organization & world bank 2011). the exclusion of persons with disabilities in mdgs represent a lost opportunity to tackle the social, educational, health and economic problems faced by marginalised persons with disabilities. there is a growing opinion that the mdgs will not be realised unless persons with disabilities are included (united nations 2011). as a result, there is a push to seek disaggregated disability data for each of the post-2015 mdgs (united nations 2011, 2013). such reports will present an opportunity to monitor the progressive realisation of the rights of pwds globally.similar to uganda, there is evidence of data related challenges globally (mitra 2013; world health organization & world bank 2011): ‘appropriate statistical and research data needs to be collected at both country and international levels to assist the crpd formulate and implement policies to achieve internationally agreed development goals’. this calls for improvement of data at both the national and international level in order to capture all aspects of disability including contextual factors to give a complete picture of disability and functioning. it is advised to disaggregate data further by gender, age, income or occupation to uncover trends, patterns and other information about ‘subgroups’ of people experiencing disability. furthermore, setting international standards on data and using standardised questions can improve harmonisation and ensure comparison with other countries (mitra 2013; world health organization & world bank 2011). therefore, data collected at the national level need to be relevant and comparable at the global level, possibly by basing design on international standards, for example, the international classification of functioning, disability and health or icf (mitra 2013; world health organization & world bank 2011). conclusion top ↑ uganda has excelled in its commitment to disability rights by establishing a comprehensive body of legislation, policies and socio-economic programmes consistent with social justice. the evidence presented in this article highlights there continues to be a gap between laws, policies and practice. the implementation gap is about negative cultural attitudes towards disability, poor funding, inadequate training in inclusive education and limited access to accessible information and assistive mobility devices. the implementation gap makes monitoring progress difficult and discourages prioritising resource allocation to disability (lang & murangira 2009; uganda bureau of statistics 2011). most importantly, there is a lack of benchmarking of policies and indicators of equity in access to health, education, and social protection for persons with disabilities. as uganda strives towards progressive realisation of rights of persons with disabilities the following recommendations are likely to make a difference in transforming legal and policy commitments into measures of equity:• community advocacy to change societal and cultural negative attitudes towards pwds. • training more educators in inclusive education to meet the increased demand in schools due to universal education • provision of accessible information and assistive devices to enhance mobility, especially in health and education programmes to ensure social inclusion of pwds. • earmarking of disability funds in all government departments to ensure that disability as a crosscutting issue is prioritised in all government programmes. • routine collection of systematic data on disability, mainstreaming of disability in all government reports and extensive analysis of disability data, similar to gender analysis. better data collection across all government departments on disability enables performance and policies to be assessed over time. acknowledgements top ↑ we are grateful to ms jenny watts and reviewers for comments on earlier draft. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions j.a-o. 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bank, 2009, people with disabilities in india: from commitments to outcomes , viewed 08 november 2013, from http://wwwwds.worldbank.org/external/default/wdscontentserver/wdsp/ib/2009/09/02/000334955_20090902041543/rendered/pdf/502090wp0peopl1box0342042b01public1.pdf world health organization and world bank, 2011, world report on disability , viewed 07 april 2014, from http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf?ua=1 yousafzai, a.k., edwards, e., d’allesandro, c. & lindström, l., 2005, ‘hiv/aids information and services: the situation experienced by adolescents with disabilities in rwanda and uganda’, disability and rehabilitation 27(22), 1357–1363. http://dx.doi.org/10.1080/09638280500164297 footnote top ↑ 1.women face double stigma for being disabled and for being female in a patriarchal dominated culture like uganda. introduction findings discussion conclusion acknowledgements references about the author(s) shireen damonse department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa nafisa mayat department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa sumaya gabriels department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa eve m. duncan department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation damonse, s., mayat, n., gabriels, s. & duncan, e.m., 2025, ‘the higher certificate in disability practice strengthening rehabilitation in community-oriented primary care’, african journal of disability 14(0), a1515. https://doi.org/10.4102/ajod.v14i0.1515 opinion paper the higher certificate in disability practice strengthening rehabilitation in community-oriented primary care shireen damonse, nafisa mayat, sumaya gabriels, eve m. duncan received: 08 july 2024; accepted: 17 mar. 2025; published: 31 july 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction current public health system reforms emphasise community-oriented primary care (copc) as part of universal health coverage (uhc) (western cape department of health [wcdoh] 2023). disability and community-based rehabilitation (cbr) are neglected public health issues because of the dominance of vertical disease-specific primary healthcare programmes (louw et al. 2023; the lancet public health 2021). disability is an umbrella term for impairments, activity limitations and participation restrictions arising from the interaction between a person’s health condition(s) and context (environmental and personal factors) (world health organization [who] 2012). community-based rehabilitation is not the same as acute, transitional care and outreach rehabilitation. it is a community development strategy that creates equal opportunities for rehabilitation, poverty reduction and social inclusion for persons with disabilities and their families (who 2010). community-based rehabilitation contributes to uhc and health system strengthening because it addresses the access to medical care, rehabilitation, health promotion, prevention and provision of assistive devices through intersectoral liaison at a primary level and reduces the burden of care at secondary and tertiary levels of care (who 2017). the delivery of cbr in copc requires dedicated teams of rehabilitation professionals and appropriately trained rehabilitation care workers (rcws). while outreach services might provide a continuum of care for persons with disabilities after discharge from acute secondary and tertiary levels of care or from transitional care facilities, a cbr approach would be better aligned with the fundamental principles of copc (philpott, mcclaren & rule 2020). in this article, we share opinions about the training of rcws to strengthen the health system through cbr as a component of copc. in 2012, a provincial department of health and a local university launched an initiative aimed at developing a mid-level disability-inclusive health workforce. the aim of the initiative was to bridge the gap of suitably trained rcws to address the public health and disability needs of communities within the primary healthcare system. the primary healthcare system is being re-engineered to align with the copc approach. a 1-year higher certificate in disability practice (hcdp) was designed by a team of rehabilitation professionals and disability practitioners and registered at level 5 of the south african national qualifications framework. the first cohort of 28 students graduated in 2014. a total of 120 rcws have graduated to date, most of whom are employed in government posts or by non-profit organisations (npos) with their salaries paid by government. there are five courses in the hcdp curriculum. the main learning outcome for each course is presented hereunder: inclusive development and agency: to understand cbr as a strategy for inclusive development that promotes the rights of persons with disabilities and to implement strategies and actions that remove barriers and enable participation. disability information, management and communication systems: to know basic health information systems and implement management and communication systems in relation to care pathways for persons with disabilities across sectors. promoting health and well-being: to understand primary healthcare and assist in the design and implementation of disability prevention and health promotion actions. health and functional abilities: to understand human development and common health conditions so that clients with disabling impairments and activity limitations can be identified and screened. to provide basic rehabilitative interventions provided that facilitate participation in the areas of living, learning, working and socialising. work integrated practice learning: to provide practice-learning opportunities that integrate knowledge and skills related to the above courses. the aim of our opinion article is to advocate for the training of rcws as essential and valuable human resources to copc. our article is based on a study that investigated the contribution of the hcdp graduates towards strengthening rehabilitation in community-based services at a primary level of care. after receiving ethical approval from the human research ethics committee (hrec) at uct (064/2023), we conducted a collaborative inquiry with the cbr team servicing two sub-districts in a city metropole and a rural sub-district. participants in the metropole included eight rcws who are alumni of the first cohort of the hcdp programme; eight persons with disabilities who received their services; one social worker; three occupational therapists; and one speech and language therapist who supports and supervises the rcws. participants in the rural sub-district included one unemployed rcw who is also an alumnus of the hcdp, one community development worker, two persons with disabilities, two mothers of children with disabilities, one occupational therapist and one speech and language therapist. the therapists provide facility-based rehabilitation services at primary-level health clinics in the rural sub-district. textual and numerical data were gathered during 4-h and 6-h workshops held once a month with the participants. the discussions were recorded and transcribed. the participants also completed and discussed a checklist of rcw services based on competencies acquired through the hcdp curriculum. our article presents the findings of one of the four workshops. in the workshop, the participants completed a checklist of rcw services based on competencies acquired through the hcdp curriculum. data were analysed using deductive coding and triangulated with the wcdoh position statement on copc (wcdoh 2023) and the national framework and strategy for disability and rehabilitation services (national department of health 2015). findings figure 1 illustrates participants’ perspectives on services delivered by rcws using competencies acquired through four of the hcdp courses (ida, dimcs, phw and hfa [health and functional abilities]). competencies were consolidated during wipl and subsequent practice as members of the cbr team. the blue columns in the metropole data indicate that rcws frequently implement the knowledge and skills they acquired. the yellow columns indicate that they intermittently implement the knowledge and skills based on emergent needs and varying circumstances and populations within a sub-district. the grey column indicates that 1–2 participants felt that the services were not available. the rural data indicate that none of the rcw services are available. this is not surprising given that the one hcdp-graduated rcw is unemployed and that services by the rehabilitation professionals are facility-based at the primary care clinic level. figure 1: findings of the checklist of services delivered by rehabilitation care workers linked to higher certificate in disability practice competencies: (a) mitchells plain and klipfontein (n = 15); (b) witzenberg (n = 15). table 1 presents the perspectives of participants on the perceived differences in the scope of practice of community health workers (chws) and home-based carers (hbcs) who do not have the hcdp qualification (column a) and those that do have the hcdp qualification (column b). these reflections are based on personal experiences of the differences, given that participants were employed as chws or hbcs prior to completing the hcdp. the insights are significant because current policy directives indicate that nurse-led, ward-based outreach teams of chws will deliver comprehensive primary care services inclusive of rehabilitation (wcdoh 2023). table 1: differentiating scope of practice – according to the community-based rehabilitation. the findings in figure 1 and table 1 provide evidence that the hcdp extends the scope of practice of chws and hbcs and contributes to the strengthening of rehabilitation services at the primary level of care. theme 1: enhancing functional abilities our findings highlight that the content and practical rehabilitation skills or techniques taught in the health and functional abilities course equip the rcw to provide a wide range of rehabilitation activities and facilitate function and participation. furthermore, it is evident that rcws also provide holistic care, which includes mental health and well-being: ‘rcw comes every week, help me with the arm, stretching exercise. service is excellent, they do everything on my body, all round exercise, leg arm body turning. train me on washing, do other activities, lifting weights. the team is helpful, they work so much. rcws motivate me to do something with my life, provide basic counselling, inspire me. they encourage me to drink the mental health medication.’ (middle aged, female, person with a disability) ‘rcws zoom into specific things that will inform therapist that – involves participation, engagement, inclusion and functional things.’ (female, non-disabled person, rehabilitation care worker) theme 2: promoting health and well-being our results show that all the courses are integrated into practice, for example, the evidence hereunder indicates that rcws apply the content taught in the phw course and use a holistic approach to address factors related to health and social well-being: ‘[rcws focus on] prevention and promotion, holistic approach in addition to health. address everything challenging the patient, anything contributing to the client, do school, livelihood, medical, social, empowerment etc.’ (female therapist in a rural area) ‘rcws can plan, implement when given a project, can run a group. they are trained to think of group dynamics, make activities specific to accommodate attendees’ needs.’ (female, non-disabled person, rehabilitation care worker) theme 3: strengthening continuity of care evidence suggests that because the chws in the rural areas are not aware of the hcdp programme, their knowledge and skills are limited with regard to rehabilitation and disability. they are not necessarily able to identify when a client requires a referral to facilitate their continuity of care. the continuity of care is emphasised strongly within all courses in the hcdp programme: ‘they [chws] are not trained. like for example, i know that they sometimes look at the weight and the growth of the baby, those are the things that they can identify, but with regards to rehab, they can only identify whether a person is in the wheelchair, or the person is using a crutch but all the other things they are not able to identify and refer to us. i definitely think [hcdp] training for them [chws] would be very needed … she was telling us about the programme, i was so surprised i never heard of it. it sounds amazing.’ (female, non-disabled person, therapist) discussion the three themes show a clear alignment between the competences of the rcws and their practice, which contributes to strengthening the implementation of the copc framework. our findings show that the metropole is better resourced than the rural areas; thus, the need exists for having rcws as part of the rehabilitation team in rural areas. this may be attributed to the fact that the programme development and initial training were initiated and funded by the wcdoh. however, there are a limited number of rcw posts and trained rcws available to deliver rehabilitation services to persons with disabilities and their families at a primary level. we propose that chw skills be upgraded through teaching and learning pedagogical innovations such as the hcdp and that vacant nurse assistant and/or general assistant posts be allocated to posts for rcws. we are of the opinion that there are limited career development opportunities for rcws and suggest articulation into a 2-year diploma programme that enables rcw services with wider intersectoral collaboration in line with the education and livelihood components in the cbr guidelines (who 2010). conclusion the hcdp programme is a critical human resource development strategy that ensures that persons with disabilities and their families across the life course receive basic rehabilitation and community support systems so that they can live productive, healthy and meaningful lives. evidence suggests that upskilling chws with hcdp training strengthens community-orientated primary care services within the metropole, and the same approach of prioritising training of chws in the rural area will be helpful in improving rehabilitation services in rural areas. acknowledgements the authors would like to thank the study participants; the management and rehabilitation teams from the klipfontein and mitchells plain sub-structure; metro health services; and the research team: theresa lorenzo, fatima peters, judith nomthandazo mahlangu and fatima essop. competing interests the authors reported that they received funding from the university of cape town, faculty of health sciences research stimulus grant, which may be affected by the research reported in the enclosed publication. the authors have disclosed those interests fully and have implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions s.d. and n.m. participated in the facilitation of focus groups, data collection, analysis of findings, reviewing and correcting of the article during the writing phase. s.g. participated in data collection, analysis of findings and reviewing of the article. e.m.d. participated in the analysis of findings, wrote the first draft of the article and all authors edited and approved the final version. ethical considerations ethical clearance was obtained from the university of cape town faculty of health sciences human research ethics committee (hrec ref: 064/2023). funding information the study was funded by the university of cape town, faculty of health sciences research stimulus grant 2022/23. data availability the authors confirm that the data supporting the findings of this study are available within the article and its references. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, or agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references louw, q., conradie, t., soyizwapi, n., davis-ferguson, m., white, j., stols, m. et al., 2023, ‘rehabilitation capacity in south africa – a situational analysis’, international journal of environmental research and public health 20(4), 3579. https://doi.org/10.3390/ijerph20043579 national department of health, 2015, framework and strategy for disability and rehabilitation in south africa 2015–2020, government, pretoria. philpott, s., mclaren, p. & rule, s., 2020, ‘toward “rehab 2030”: building on the contribution of mid-level community-based rehabilitation workers in south africa’, south african health review 2020(1), 155–162, viewed n.d., from https://journals.co.za/doi/pdf/10.10520/ejc-healthr-v2020-n1-a19. the lancet public health, 2021, ‘editorial. disability-a neglected issue in public health’, lancet public health 6(6), e346. https://doi.org/10.1016/s2468-2667(21)00109-2 western cape department of health (wcdoh), 2023, position statement on community orientated primary care (copc) towards universal health coverage (uhc), cape town, circular h11/2023. world health organization (who), 2010, community based rehabilitation: cbr guidelines. towards community inclusive development, wb 320, world health organisation, viewed n.d., from https://www.who.int/publications/i/item/9789241548052. world health organization (who), 2012, international classification of health, disability and functioning, viewed n.d., from https://www.who.int/standards/classifications/internal-classification-of-functioning-disability-and-health. world health organization (who), 2017, rehabilitation in health systems, who, geneva. article information authors: elizabeth m. dalton1 judith anne mckenzie2 callista kahonde2 affiliations: 1techaccess center, rhode island, usa 2disability studies programme, school of health and rehabilitation sciences, university of cape town, south africa correspondence to: judith mckenzie postal address: f45 old main building, groote schuur hospital, observatory 7925, south africa dates: received: 13 nov. 2011 accepted: 08 aug. 2012 published: 13 nov. 2012 how to cite this article: dalton, e.m., mckenzie, j.a., kahonde, c., 2012, ‘the implementation of inclusive education in south africa: reflections arising from a workshop for teachers and therapists to introduce universal design for learning’, african journal of disability 1(1), art. #13, 7 pages. http://dx.doi.org/10.4102/ ajod.v1i1.13 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. the implementation of inclusive education in south africa: reflections arising from a workshop for teachers and therapists to introduce universal design for learning in this original research... open access • abstract • introduction • inclusive education in south africa    • educational history, inclusion, and universal design for learning    • the neurological foundation of universal design for learning (udl)    • the core principles of universal design for learning • universal design for learning workshop at the university of cape town    • participants    • programme • outcomes of the workshop • discussion • ethical considerations • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ south africa has adopted an inclusive education policy in order to address barriers to learning in the education system. however, the implementation of this policy is hampered by the lack of teachers’ skills and knowledge in differentiating the curriculum to address a wide range of learning needs. in this paper we provided a background to inclusive education policy in south africa and a brief exposition of an instructional design approach, universal design for learning (udl) that addresses a wide range of learning needs in a single classroom. we reported on a workshop conducted with teachers and therapists in south africa as a first attempt to introduce udl in this context. knowledge of udl was judged to be appropriate and useful by the course participants in the south african context as a strategy for curriculum differentiation in inclusive classrooms. furthermore, knowledge of the udl framework facilitates dialogue between teachers and therapists and provides a relatively simple and comprehensive approach for curriculum differentiation. we therefore conclude that there is potential for this approach that can be expanded through further teacher training introduction top ↑ it is a matter of grave concern that children with disabilities on the african continent face barriers in the education system for a multitude of reasons (acpf 2011). in the south african context this has resulted in a massive exclusion of disabled children from education (department of education 2001). despite the development of an inclusive education policy to address this exclusion, one of the issues that hampers progress is the lack of teacher skills in adapting the curriculum to meet a range of learning needs (chataika, mckenzie, swart & lyner-cleophas 2012). this highlights the need for frameworks that empower teachers with the necessary skills to cater for learners with diverse needs. universal design for learning (udl) is one such framework that conceptualises and addresses the need for a more flexible curriculum designed to lower the barriers and to enable learners with widely varying needs to be included in the learning process (brand, favazza & dalton 2012; dalton 2005; hall, strangman & meyer 2003).in this paper we introduce udl principles and implementation guidelines, and argue that udl can have a useful application in the south african context of inclusive education. in order to make this claim, we present a background on inclusive education in south africa, followed by a background and overview of udl. we then present the report on a workshop on udl conducted at the university of cape town in south africa. we draw on evaluations made by the participants of the workshop in our discussion of the potential usefulness of udl in their work contexts. participant responses to specific activities are presented to illustrate their application of udl in the workshop context. we conclude this paper with a discussion of the potential place of udl in the implementation of inclusive education in south africa. inclusive education in south africa top ↑ since 1994, when democracy was established in south africa, there has been a radical overhaul of government policy from an apartheid framework to providing services to all south africans on an equitable basis. the provision of education for learners with disabilities has been part of that process and the development of an inclusive education system can be traced back to the nation’s founding document, the constitution of the republic of south africa, act no. 108 of 1996 (republic of south africa 1996). in section 29 (the bill of rights) it is stated that everyone has the right to ’a basic education, including basic adult education; and to further education, which the state through reasonable measures must make progressively available and accessible‘. it further states that the state may not discriminate directly or indirectly against anyone on one or more grounds, including disability.the framework for an inclusive education system is laid out in education white paper 6: special needs education: building an inclusive education and training system (department of education 2001). the scope of this policy is broad as it attempts to address the diverse needs of all learners who experience barriers to learning. the policy calls for a significant conceptual shift that is based on the following premises: • all children, youth and adults have the potential to learn, given the necessary support • the system’s inability to recognise and accommodate the diverse range of learning needs results in a breakdown of learning. the policy asserts that in order to make inclusive education a reality, there needs to be a conceptual shift regarding the provision of support for learners who experience barriers to learning. the department of basic education has adopted a strategy that will drive the implementation of inclusive education policies. summarised, this policy has two major components, elaborated in two sets of guidelines: the national strategy on screening, identification, assessment and support (sias); (department of education 2008) guides inclusive education policy by defining the process of identification, assessment, and enrolment of learners in special schools, and it curbs the unnecessary placement of learners in special schools. the sias strategy provides guidelines on early identification and support, the determination of nature and level of support required by learners, and identification of the best learning sites for support. the strategy also provides guidelines on the central role of parents and teachers in implementing the strategy. the guidelines for responding to learner diversity in the classroom through curriculum and assessment policy statements (department of education 2011) provide practical guidance to school managers and teachers on planning and teaching to meet the needs of a diverse range of learners. this document has recently been redrafted to incorporate curriculum changes in the curriculum and assessment policy statement (caps) and the revised document forms part of the caps orientation programme for teachers and education officials in the provinces. despite the enabling policy described above, the implementation of inclusive education in south africa is slow and only partial (wildeman & nomdo 2007) the reasons for this are numerous and relate to problems that affect the education system as a whole, the role of special schools, and other support structures and conditions of poverty, amongst others (stofile & green 2006; engelbrecht 2006). the issue that this paper addresses, however, is udl as a potential framework to deal with teachers’ lack of knowledge and skills on how to design and present the curriculum in ways that can meet the diverse needs of learners in their classrooms. teacher training programmes do not appear to be adequately addressing this need, resulting in stress for teachers and lack of progress of learners with disabilities (engelbrecht, swart, eloff, 2001; chataika et al. 2012; engelbrecht 2006). the issue of curriculum differentiation is fundamental to the implementation of inclusion. in its apparent absence, children who experience barriers to learning cannot expect to have their needs met in a least-restrictive and inclusive setting with their age-mates. it was with this motivation that the conceptual and instructional framework of udl was presented in a workshop held at the university of cape town in july 2011. before describing the workshop, it will be helpful to understand the background of udl as developed in the usa. the origins, rationale, research base, basic components and overall structure of udl are given below. educational history, inclusion, and universal design for learning over the past 37 years, the united states experienced significant changes in its system of education for students with disabilities. prior to 1975, little attention was paid to meeting the needs of students with disabilities within a general education environment. following the implementation of us public law 94–142 (education for all handicapped children act 1975), students have been included increasingly in the general education system and are increasingly expected to achieve in similar ways (and to similar standards) as their general education peers, thus supporting students with disabilities to be involved with their non-disabled peers to the maximum extent possible.after a while, however, this system came into question as being insufficiently inclusive (reynolds, wang & walberg 1987). a movement to fully include students with disabilities in us general education classrooms was the result (fuchs & fuchs 1994). with increasing access for learners with widely-varying needs, educational models were developed, going beyond mere accommodations and modifications, toward addressing all students’ educational needs through innovative and pro-active instructional design of the general education curriculum (hitchcock, meyer, rose & jackson 2002; simmons & kame’enui 1996). us schools are now responsible for providing effective instruction for all children, together, in inclusive educational settings. the us no child left behind act (nclb 2002) required teaching and learning standards to be established for all students. more specifically, nclb required that all students, (1) be included in state-wide assessments, (2) meet assessment standards, and (3) be supported by appropriate technology (including assistive technology) to achieve this. as a consequence of the re-authorised special education law of 1997, and nclb, us systems of special education and general education no longer follow parallel but separate paths. all students, including students with disabilities, are expected to be taught, supported, and assessed in the general education environment and curriculum to the maximum extent possible. south african inclusion initiatives, as described in the previous section, ‘inclusive education in south africa’, seek comparable learning models that will support the necessary adaptation in curriculum. teachers are thus increasingly responsible for providing instruction in a way that reduces barriers and meets the needs of a growing diversity of learners. this is reflected internationally in the continued growth of inclusion initiatives in the united states, and in other countries that support equal educational access and opportunity for all learners (brazil, ford & voltz 2001; luftig & pavri 2000; salend 2000; sapon-shevin, dobbelaere & corrigan 1998; zindler 2009; peters 2004). education systems have an increased responsibility to effectively teach learners whose learning styles and needs vary widely, through inclusive education models. learners want and need to learn in ways that are accessible to them, and they want to have varied choices for demonstrating what they have learned. families recognise that learners with differing needs have the right to equal opportunities to learn, and equal access to the general curriculum. teachers, therefore, need effective models that integrate variations for learning and teaching in the goals, methods, materials, and assessments of instruction. this goal will only be accomplished through new approaches to educational design. universal design for learning (udl) is a new model for designing all aspects of the learning environment to address the wide-ranging variation of student needs that exist in an inclusive educational system. the center for applied special technology, known as cast inc., first described the theory of universal design for learning in 1998 (cast 1998). based upon brain research, and extending the architectural concept of universal design (center for universal design 1997), the framework of universal design for learning (udl) supports these objectives, and is highly relevant for learners with widely varying needs, including learners with and without specific disabilities (rose & meyer 2002). understanding and implementing udl, therefore, can be of great interest to educators, administrators, and education support professionals around the world. the neurological foundation of universal design for learning (udl) udl is based in the fields of cognitive science and neuroscience that address the understanding of how we learn through memory, language processing, perception, problem solving, and thinking. these fields suggest that cognition involves three neural functions, (1) pattern recognition, (2) pattern planning and generation, and (3) pattern determination of importance (rose & strangman 2007). lev vygotsky and colleagues identified three essential learning components that affect levels of performance of these neural functions; (1) recognition of information to be learned, (2) application of strategies to process the information, and (3) engagement in the learning task (vygotsky 1962). based upon vygotsky’s work and others, the center for applied special technology (cast) developed the conceptual framework of udl (meyer & rose 1998; rose & meyer 2002). the framework identifies three brain networks preferences, (1) recognition, (2) strategic, and (3) affective (rose & strangman 2007) which accounts for the broad diversity of learning styles and closely correlate with the work of vygotsky (1962) and others. the core principles of universal design for learning the three core principles of udl emerged from cast’s research work on the neurological basis of learning styles, in combination with its practical work with learners (hall, strangman & meyer 2003):• multiple means of representation: provide multiple, flexible methods of presentation to support recognition learning (the how of learning). the teacher can present, for example, the learning materials through a variety of media (visual, auditory or tactile), and provide multiple examples that can be modified in complexity to meet a range of learning needs. • multiple means of action and expression: provide multiple, flexible methods of action and expression to support strategic learning (the what of learning). the teacher may use strategies that allow the learner to practice tasks with different levels of support and to demonstrate their knowledge and skills in a diversity of ways. • multiple means of engagement: provide multiple, flexible options for engagement to support affective learning (the why of learning). this principle involves creating interesting learning opportunities that motivate and stimulate learners according to their personal backgrounds and interests. at the heart of udl is the design of goals, methods, materials, and assessments to make them accessible for all students, including those with disabilities (ncudl 2012; rose & meyer 2002). the potential impact of udl as described by orkwis (1999) is the: … design of instructional materials and activities that allows learning goals to be attainable by individuals with wide differences in their abilities to see, hear, speak, move, read, write, understand english, attend, organize, engage, and remember without having to adapt thecurriculum repeatedly to meet special needs. (p. 2). when implemented through planned curriculum design and the integrated use of supports, strategies and tools for teaching and learning, udl holds great potential to establish truly accessible learning environments for all students. successful implementation of udl principles into practice does not require the use of specific technology or equipment; however, the unique capabilities offered through digital technology to transform information into accessible formats offer additional tools to use that can address learner variability. strategic and thoughtful use of educational and assistive technologies, and appropriate strategies for their effective use, can further the implementation of udl for many students and teachers, when used in concert with some of many other tools available to teachers that support high-quality instruction (dalton 2005). udl is a conceptual and practical model for the education community, providing a framework and guidelines to change the way teachers teach, the way learners learn, and the way barriers to education for all learners can be overcome. educators and researchers continue to develop instructional supports and strategies that will ensure successful integration of udl in practice, informed integration of technology supports, and successful reduction of barriers to education for learners in the margins (cast 2011; maryland state department of education 2011; meyer & rose 2005; paul v. sherlock center 2011; udl-irn 2012). these represent valuable resources for practitioners wanting to implement the udl approach. within the udl framework, educational planning starts with recognising and anticipating diversity in the classroom. by designing from the start, instruction and curricula that recognise, honour, and address the full range of learners’ natural variation of styles, needs, and preferences, teachers can develop, implement, and adjust a varied curriculum in which barriers to learning have been reduced or, possibly, eliminated. by employing multiple means of representation (including multisensory approaches), multiple means of student expression and actions, and multiple ways to engage and motivate learners, udl supports maximal learning for the widest range of learners, thereby reducing the individual accommodations necessary to address specific barriers to learning arising from disability or other factors. the essence of the approach is expressed below: udl is designed from the outset to meet the needs of all learners, making costly, time-consuming, and after-the-fact changes unnecessary. the udl framework encourages creating flexible designs from the start that have customizable options, which allow all learners to progress from where they are and not where we would have imagined them to be. (cast 2011, p. 4) this extends the possibilities for effectively including all learners in the general curriculum, and reducing the impact of barriers to learning in the educational environment (dalton 2005). it is precisely these possibilities that the strategy of curriculum differentiation is intended to develop in south african inclusive education policy. even with an initial understanding of the udl framework and principles, many practical questions regarding udl implementation still remain: what does udl mean for a teacher in the classroom? how can a whole school develop a plan to implement udl? what evidence exists of udl benefit internationally? what are possible concerns or problems regarding udl implementation? how can systems collaborate to design accessible udl curricula? in an effort to explore at least some of these important questions further, and recognising the potential of a ‘good fit’ between udl and the need for curriculum differentiation skills in south african educational settings, authors were motivated to conduct a udl workshop for south african teachers and therapists. universal design for learning workshop at the university of cape town top ↑ collaboration was established between a researcher in inclusive education at the university of cape town and a udl expert who completed her postdoctoral fellowship in udl leadership at boston college and the cast centre in 2010 and who has led a udl workgroup of university educators in rhode island for more than five years. this oneday workshop had the aim ‘to support teachers and therapists who are working with children with disabilities either in special schools or in the mainstream to meet a wider range of learning needs’.the day’s programme included the following outcomes to be achieved by the end of the day: • to understand the concept of udl and how it can be used to ensure that all learners can learn • to identify ways in which classroom instruction can be differentiated to meet the needs of a wide range of learners • to understand and experience the steps involved in identifying relevant assistive devices and computer technology to support varied learning programmes.< participants invitations to the workshop were sent to teachers and therapists who work with learners experiencing barriers to learning. a total of 13 participants were involved in the workshop, representing a diverse group in terms of their professions. there were five occupational therapists, four teachers from special schools, two managers of inclusive education organisations and two speech therapists. we recognise that this is a small number of participants and it is not our intention to generalise in any way from this specific workshop experience. however, we do believe that the response of these participants can be usefully explored with a view to understanding whether udl can meet the needs of practitioners engaged in inclusive education in south africa to develop their skills in curriculum differentiation. programme the workshop ran for a full day and it was divided into four sessions:• session 1 introduced the udl concept to the participants, including its background, principles and its potential to improve the way the teachers and therapists promote inclusion of learners with disabilities in the learning process. activities that explored basic udl barriers and solutions, as identified by participants, were conducted. a brief background to inclusive education in south africa was also presented. • session 2 focused on udl in the classroom, and addressed ways to diversify the curriculum, models for udl application, assistive technologies (definition, scope, selection, and applications), discussion of the technology continuum and issues regarding technology in the classroom. activities included participant discussion and identification of udl solutions with and without technology: • session 3 highlighted practical applications of udl, use of the udl educator checklist and udl decision-making, exercises to practice checklist use as applied to video udl case studies, debriefing, and the discussion of findings. • session 4 was a concluding session where the participants had the opportunity to ask questions, and provided feedback to the presenters verbally and through the post-workshop evaluation form. outcomes of the workshop top ↑ outcomes are presented here in two ways, (1) activity results, and (2) full workshop evaluation. activities were conducted in small groups of four or five with representation by teachers, therapists and administrators.after a basic introduction to udl, participants’ responses to the activity conducted in the first session were noted (table 1). groups were asked to respond to the statement, ‘identify barriers that relate to the udl core principles and, from your own experiences, identify methods and materials that can help to address the barriers to instruction.’ table 1: universal design for learning barriers and solutions. the second session focused on discussion of technology and how it relates to the implementation of the udl framework, with participants’ responses to the activity conductedas illustrated (box 1). in this activity groups were asked to respond to the statement, ‘discuss applying udl without technology, and with the help of technology. identify an example for each of the 3 udl principles. what are some of the differences, advantages, and/or disadvantages?’ box 1: universal design for learning without and with technology. finally, the results of the full workshop evaluation indicate that all participants found the workshop to be helpful and informative and they all agreed that the information was presented at an appropriate level. furthermore, all participants felt that they had gained a better understanding of how therapists and teachers can work together within a udl framework and most participants (9 out of 11 respondents) felt that they were now able to identify ways in which classroom instruction can be differentiated. fewer respondents (7 out of 11) felt that they were in a better position to choose assistive devices relevant to their learning programmes. overall comments are included in the discussion below. discussion top ↑ there is an urgent need for teachers to understand and address the range of diverse learning needs in their classrooms, if south africa is to address the exclusion of learners from the education system. in order to do this teachers need new skills, training, and support from the educational system. furthermore, teachers and therapists need to find ways to plan and work collaboratively, for the greatest benefit to their learners. based on our experience with the workshop outlined in this paper, we identify several compelling reasons for using udl as a means toward the improvement of inclusive education in south africa. these are discussed below.udl is, as its name suggests, an attempt to maximise learning in a universal manner. as such, it aims to apply the same principles to all learning rather than proposing specific learning programmes for different forms of diversity or disability. this allows for a certain simplicity that is very attractive to the busy teacher. if (s)he can implement the basic principles by planning for a variety of presentation methods, allowing for different forms of expression and engaging learners emotionally, then a whole range of needs can be met. an additional advantage of udl is that therapists and teachers can readily share the language of udl. whereas teachers speak the language of the curriculum, therapists are more steeped in medical or psychological terms. by paring down teaching and learning to the three processes of flexible methods of presentation, expression and engagement, all those working with the learner can collaborate with a common understanding. participant suggestions as to how udl can be implemented, has been noted (table 1). as one participant commented, ‘there was lots of room to apply and define more specific ways for therapists and teachers to work together’ (occupational therapist 1). participants generally benefitted from the practical nature of the workshop, as indicated by the overall workshop evaluation results; however, a one-day workshop was limited by time and could not cover all areas as originally anticipated. some comments revealed that participants ‘would have wanted more time to practice the checklist’, and ‘this area (udl and transition) was not explored in depth’. future workshops should take these comments into consideration, and plan for extended sessions that would include several practice sessions with udl implementations tools to help participants increase their competence and confidence in udl implementation. the implementation of udl is often regarded as a high-technology option; however, learning activities conducted in the workshop showed that technology can be pursued at many different levels (box 1). smart-boards, i-pads and other tools can contribute to achieving educational outcomes, but low-tech options can achieve the similar outcomes when implemented by using the three core udl principles. it was in this connection that a discussion took place on how an education recycling centre that focuses on useful teaching materials could be set up for teachers as a resource for the further implementation on udl in south africa. overall, participants found udl relevant to the south african situation: ‘the concepts were applicable to the south african context … this will need support from the department of education’ (special education teacher 2). as a systems change initiative, udl offers a framework that supports the design of instruction that integrates many variables and variations of learners’ and educators’ needs, but the potential for change cannot be realised without significant and on-going training and professional development of all professionals involved in the system of education. participants called for continued instruction in udl and inclusive education. some comments included, ‘session was fruitful, hope for more of these in the future’, and ‘course extremely relevant to current interests’. such instruction would be beneficial not only for teachers and therapists, but also for administrators of educational systems. many questions about udl and its implementation in classrooms and educational systems in the usa and around the world remain to be addressed. some questions were identified earlier in this paper, and others have emerged from the field (edyburn 2010). organisations such as the udl implementation and research network (udl-irn, http://udl-irn.org/) are focusing on such questions and striving to develop tools and resources to address them. the center for applied special technology (cast, www.cast.org) and the national udl center ( www.udlcenter.org) continue their efforts to develop udl as a comprehensive curriculum design framework and approach that can effectively support the inclusion of all learners in the general education curriculum. with one day of training in udl, workshop participants were able to identify examples relating to the three udl core principles, example of barriers to udl implementation, ways to implement udl with and without technology, and started to explore the use of an educator checklist tool for udl analysis and planning. this testifies to the attractive simplicity of the method. in consideration of the enthusiasm with which the participants received the udl concepts, the authors (who were the organisers and presenters of the workshop) are exploring ways by which workshops of this nature can continue in south africa to promote the implementation of udl in south african schools. the authors see this as an avenue that will enhance inclusion of learners who experience barriers to learning in south africa and promote effective transition from school to productive work. ethical considerations top ↑ all participants attended the workshop voluntarily and consented to the use of their evaluation forms and activity notes for course development, including research. there was no risk of harm to the participants and their anonymity was maintained. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this article. authors’ contributions e.d. (techaccess center of ri) was the project leader and e.d. and j.m. (university of cape town) were responsible for project and instructional design. c.k. (university of cape town) managed training organisation, preparation, and details. e.d., j.m., and c.k. planned workshop content. e.d. and j.m. conducted training. e.d., j.m., and c.k. wrote the manuscript and shared editing. references top ↑ acpf, 2011, the lives of children with disabilities in africa: a glimpse into a hidden world, addis ababa: the african child policy forum.brand, s., favazza, a.e and dalton, e.m., 2012, universal design for learning: a blueprint for success for all learners, kappa delta pi record 48(3), 134–139, philadelphia, pa: taylor & francis group, llc. http://bit.ly/oeuosf brazil, n., ford, a. & voltz, d. l., 2001, ‘what matters most in inclusive education: a practical guide for moving forward’, intervention in school & clinic 37(1), 23–30. chataika, t., mckenzie, j., swart, e. & lyner-cleophas, m., 2012, ‘access to education in africa: responding to the united nations convention on the rights of persons with disabilities’, disability and society 27(3), 385–398. http://dx.doi.org/10.1080/09687599.2012.654989 cast, 1998, design principles for student access. topical brief, alexandria, va: council for exceptional children. cast, 2011, universal design for learning guidelines version 2.0, wakefield, ma: center for applied special technology author, viewed 20 october 2011, from http://www.udlcenter.org/sites/udlcenter.org/files/udl_guidelines_version_2.0_(final)_3.doc center for universal design, 1997, what is universal design?, viewed 22 april 2002, from http://www.design.ncsu.edu/cud/univ_design/ud.htm dalton, e.m., 2005, ‘teaching and learning for all students through differentiated instruction and technology’, ri-ascd journal of research and professional development: the leading edge, ri-ascd v1. coventry, ri. department of education, 2001, education white paper 6. special needs education: building an inclusive education and training system, government printer, pretoria. department of education, 2011, guidelines for responding to learner diversity in the classroom through curriculum and assessment policy statements, government printer, pretoria. department of education, 2008, national strategy on screening, identification, assessment and support: school pack, government printer, pretoria. edyburn, d., 2010, ‘would you recognize universal design for learning if you saw it? 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occasional paper, idasa, pretoria. vygotsky, l.s., 1962, thought and language, hanfmann, e. & vakar, g. (eds.), m.i.t. press, massachusetts institute of technology, cambridge. http://dx.doi.org/10.1037/11193-000 zindler, r., 2009, ‘trouble in paradise: a study of who is included in an inclusion classroom’, teachers college record 111(8), 1971–96. about the author(s) rory du plessis school of the arts, faculty of humanities, university of pretoria, pretoria, south africa citation du plessis, r., 2021, ‘erratum: the life stories and experiences of the children admitted to the institute for imbecile children from 1895 to 1913’, african journal of disability 10(0), a812. https://doi.org/10.4102/ajod.v10i0.812 note: doi of original article published: https://doi.org/10.4102/ajod.v9i0.669 correction erratum: the life stories and experiences of the children admitted to the institute for imbecile children from 1895 to 1913 rory du plessis published: 02 aug. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in the version of this article initially published, du plessis, r., 2020, ‘the life stories and experiences of the children admitted to the institute for imbecile children from 1895 to 1913’, african journal of disability 9(0), a669. https://doi.org/10.4102/ajod.v9i0.669, the author’s affiliation was given incorrectly in the ‘affiliation’ section. the correct affiliation should be ‘school of the arts, faculty of humanities, university of pretoria, pretoria, south africa’ instead of ‘school of visual arts, faculty of humanities, university of pretoria, pretoria, south africa’. this correction does not alter the significance of the study findings or the overall interpretation of the study results. the publisher apologises for any inconvenience caused. abstract introduction background data and methodology results households discussion acknowledgements references footnote about the author(s) jill hanass-hancock sa medical research council, south africa school of health science, university of kwazulu-natal, south africa tamlyn c. mckenzie school of accounting, finance and economics, university of kwazulu-natal, south africa citation hanass-hancock, j. & mckenzie, t.c., 2017, ‘people with disabilities and income-related social protection measures in south africa: where is the gap?’, african journal of disability 6(0), a300. https://doi.org/10.4102/ajod.v6i0.300 original research people with disabilities and income-related social protection measures in south africa: where is the gap? jill hanass-hancock, tamlyn c. mckenzie received: 25 july 2016; accepted: 18 may 2017; published: 26 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with disabilities are at increased risk of poverty, particularly in low-and middle-income countries. however, recent evidence suggests that this association is more nuanced than previously anticipated and that we need better data to understand the opportunity and out-of-pocket costs that diverse groups of people with disabilities may experience. objective: this paper discusses if disability is associated with opportunity cost and loss of income both on the individual and household level in south africa, and if these costs differ depending on disability type and severity. methods: for this purpose, the paper analyses general household survey 2011 data (people between 15 and 59) using descriptive statistics disaggregated via disability type and severity. the paper also assesses if social grants counteract these costs and reduce economic vulnerability. results: the analysis of the data reveals that people with disabilities are affected by issues relating to multidimensional poverty such as lower educational attainment and fewer employment opportunities. in addition, households of people with disabilities (with the exception of milder visual problems) earn significantly less than households without people with disabilities, and this particularly applies to households with people with severe disabilities. this vulnerability also varies by disability type. the country’s social protection mechanisms, in terms of social grants, counteract economic vulnerability to some extent but do not consider the nuanced economic impact of diverse conditions nor the increased out-of-pocket costs related to disability. conclusions: this calls for more equitable social protection mechanisms that include accessible services, livelihood programmes and disability benefits. introduction it has been estimated that one billion people or 15% of the population worldwide have one or more disabilities and that this number is increasing, particularly in resource-poor settings (world health organisation & world bank 2011). disability and poverty are understood as being interlinked in a vicious cycle with disability increasing the risk of poverty and poverty leading to disability. in the past two decades, researchers have argued that this particularly applies to low-and middle-income countries (lmic) (eide & loeb 2006; elwan 1999; hanass-hancock & mitra 2016; mitra, posarac & vick 2011; mont & nguyen 2011). not surprisingly, there has been a call for disability-related issues to be factored into poverty alleviation programmes and into the emerging social protection mechanisms in these countries (schneider et al. 2011). it has been increasingly recognised that marginalised groups such as people with disabilities have been ignored in previous efforts to eradicate poverty and inequality. the 2013 united nations (un) report on ‘a new global partnership: eradicate poverty and transform economies through sustainable development’ acknowledges this oversight in the previous developmental agenda (millennium development goals) (un 2013a, 2013b). the report shifts focus towards a vision of ‘leaving no one behind’ (un 2013a) and lists people with disabilities among vulnerable populations who need to be included to achieve sustainable development. current literature highlights that the poverty-disability link is more complex and nuanced than previously anticipated (banks & polack 2013; graham et al. 2014; groce et al. 2011; international labour office & international disability alliance 2015; south african department of social development 2016). this literature highlights the multidimensional aspect of poverty in the context of disability, highlighting that people with disabilities may experience barriers to health, education and employment (directly reducing opportunities and potential income), as well as disability-related out-of-pocket costs. in addition, the group of people with disabilities is diverse and experiences different barriers and costs depending on their impairment, gender and environmental factors. little is known on exactly how and which people with disabilities are affected by poverty, and how social protection mechanisms might impact them. therefore, more rigorous research on the poverty-disability link is needed. this includes disaggregated data to better understand the nuances of disability and its impact on individuals, households and society at large. this particularly applies to middle-income countries (mics) such as south africa that carry the global burden of poverty (ids 2010) and are also currently developing social protection mechanisms (international labour office & international disability alliance 2015; south african department of social development 2015). south africa has a history of social security instruments targeting people with disabilities; therefore, an investigation of the impact of current practice on the economic vulnerability of people with disabilities in this country serves as an example for other mics. background extending social protection programmes to lmic has become a focus of poverty alleviation strategies in the last decade (frye 2005; hagemejer & ilo 2009; kabeer 2009; international labour office & international disability alliance 2015). this includes the provision of access to essential health care services, social assistance (e.g. old age, disability and child benefits) and affordable insurance schemes (hagemejer & ilo 2009). in this context some mics, including south africa have introduced cash transfers targeting people with disabilities and these are increasingly becoming the subject of a growing body of research (booysen 2004; case 2005; de koker, de waal & vorster 2006; international labour office & international disability alliance 2015; mitra 2005, 2010; nattrass 2004, 2005; south african department of social development 2016). south africa has undergone a rapid change in social policy and protection mechanisms in the past two decades. since 1996, the right to social protection is ensured within the south african constitution which states that ‘everyone has the right to access social security, including with appropriate assistance for those who are unable to support themselves and their dependents’ (section 27, 1c: constitutional assembly 1996). the country provides a variety of social security grants (figure 1) including the old age grant (oag), disability grant (dg) (available since 1946), foster care grant (fcg), care dependency grant (cdg), child support grant (csg) and grant-in-aid (gia). with the exception of the cdg and gia, the uptake of grants has increased considerably in the past two decades with the csg showing the largest increase (figure 1). all grants are means tested and non-contributory. the government also provides a war veterans grant, but this has been excluded from our study because of the relatively small number of recipients and the significant decline in uptake over time. figure 1: number of social grants since 1996 in south africa (excl. war veterans grant). the dg, cdg and gia (see table 1) are social protection mechanisms that directly target people with disabilities and their households. the cdg and gia are only accessed by a small number of people (sassa 2008, 2013a). the main grant accessed by households with people with disabilities is the dg. the dg is available to adults with disabilities who earn below a certain threshold (which is adjusted every year). people who are older than 60 years qualify for the oag and caregivers of children with severe disabilities for the cdg if their income is below the threshold. the country also provides a number of other social protection measures for those who earn below a certain level of income, such as fee-free schools, free essential healthcare and housing subsidies (sassa 2013b; south african department of social development 2015). south africa also has progressive labour regulations that favour the employment of previously disadvantaged people such as people with disabilities (department of labour south africa 2011). in addition, people with disabilities who are in the taxable income bracket can claim part of their disability-related costs back through the country’s tax rebate system. table 1: overview of current social protection mechanisms in south africa. the dg is a social protection mechanism directed at people with disabilities. its impact on household income can be examined using relevant south african household surveys. the dg includes a means and assets test as well as an eligibility assessment that confirms disability status (sassa 2013b). the disability eligibility assessment was originally conducted by a medical officer alone. in 2001, this assessment procedure changed, and more decision-making power was allocated to provinces. as a result, the process differs across provinces with some using medical officers and others using expert panels consisting of are habilitation officer, a representative from a disabled people’s organisation (dpo) and a medical officer (mitra 2010). some provinces use both the medical officer and the expert panel. hence, there has been a potential for a diverse interpretation of what constitutes disability with some conditions such as those that are less visible being less likely to receive a grant in some areas, while people with similar conditions may receive a grant in a different area where there is more awareness of less visible or milder forms of disability. the period 2001–2006 has seen a steady increase in applications for and the uptake of the dg (mitra 2010). researchers argue that the greater leniency associated with the change in eligibility, the increased awareness of the programme and a rising prevalence of hiv and tb are potentially responsible for the increased access to the grant (case 2005; mitra 2010). in this context, south africa’s dg programme has been criticised for not being sustainable as it may provide disincentives in terms of job-seeking and health-seeking activities. this is based on the assumption that people hold off life-saving medications such as antiretroviral treatment for hiv and aids in order to be eligible for the dg (kagee 2014; nattrass 2005; standing 2008). however, the latter is mostly based on anecdotes and not empirical evidence (kagee 2014; nattrass 2005; phaswana-mafuya, peltzer & petros 2009). on the contrary, when using south african data from the general household survey (ghs) 2005 and labour force survey (lfs) 2001–2003, mitra (2010) found that although the dg reaches households that are poorer, have more children and higher unemployment rates, there is no evidence that it functions as a work disincentive. her work shows that households were already detached from the labour market prior to the increased availability of the grant. hence mitra argues that in principle the dg is well placed to target poor households, but that its current application still involves both exclusion and inclusion errors. based on her calculation, 34% of the dg beneficiaries were receiving the grant without work-related disability1 (inclusion error), while 42% of people who might be eligible (because of work disability and income status) did not receive the grant (exclusion error). this provides serious questions with respect to the eligibility determination process regarding who gets the grant and why. in addition, mitra explored the effects of the 2001 change in policy revealing that the modifications to the assessment process increased access to the grant but did not alter labour market participation. hence, the change in policy improved the accessibility of the dg, and the evidence suggests that the grant provides no work disincentive to those who might otherwise be seeking work. similar assessments are not available on other disability-related grants such as the cdg and the gia. the cdg is designed for caregivers of children with disabilities, and the gia targets people who already receive a grant but have severe disabilities requiring full time care. the gia is accessed by a relatively small part of the population, and its value is fairly small (e.g. r250 in 2011) (sassa 2013a). the literature highlights the importance of the dg eligibility criteria and the determination process with regard to exclusion and inclusion errors. however, there is a little understanding of who among the diverse group of people with disabilities is in need of social protection and who is lacking access to these mechanisms. one of the few articles looking into this question describes the uptake of the dg in a group of xhosa speaking people in south africa (jelsma et al. 2008).the authors reveal that people with more severe disabilities were more likely to receive the grant and that people with ‘less visible conditions’ such as pain or loss of mental functions were less likely to receive the grant. this highlights the importance of understanding the nuances of disability to successfully direct the scarce resources (social grants) in mic to reach those who are in need. however, to date very little is understood on how and when diverse disabling conditions are linked to economic vulnerability, and how social protection mechanisms can counteract these vulnerabilities most efficiently in mics such as south africa. data and methodology this article attempts to describe elements of the economic vulnerability of individuals and households with disabilities in south africa. the 2011 ghs includes a set of disability-related questions as well as socioeconomic questions, making an analysis of disability and economic indicators possible. the rationale for using the 2011 version of the ghs is based on the comparability possibilities with the south african census 2011. the census while suited to the analysis of prevalence estimates does not contain as detailed information on the labour market as the ghs. the paper investigates elements of vulnerability on an individual and household level, as well as the impact of cash transfer programmes in compensating for this vulnerability. based on the above, our first hypothesis is that disability is associated with economic vulnerability in the form of income loss, as well as multidimensional poverty in the form of lack of education and employment opportunities. our second hypothesis is that this level of economic vulnerability varies in accordance with gender, degree and type of disability. this article uses a model of disability-driven economic vulnerability developed by hanass-hancock and deghaye in 2014, as a guiding framework (south african department of social development 2016). in this model, economic vulnerability is understood to be created through disability-related opportunity costs (lack of education, employment opportunities, days out of role) and out-of-pocket costs (increased cost of healthcare, assistive devices and support, transport, etc.) that both influence available household income negatively. the model also highlights that this can be compensated through social protection mechanisms such as grants, free or affordable access to healthcare, education and other services, as well as disability-sensitive tax rebate systems. in using the ghs 2011, this article aims to identify the potential opportunity costs of disability and the impact of grants at both individual and household levels. the ghs is a nationally representative household survey that is conducted annually to measure the level of development and performance of various government programmes and projects (stats sa 2012). it collects socio-demographic information (gender, race, age, education, employment), contains questions on health and disability and access to social grants and basic services (housing, water, sanitation, electricity, refuse removal, transport, health and food supplies) as well as income (including source of income) for each individual. the ghs captures information on disability through the use of the washington group (wg) short set of questions (box 1). these questions collect information regarding any difficulties associated with seeing, hearing, communicating, mobility, concentrating or remembering and self-care even when using assistive devices. the wg short set of questions is a validated set of six questions that measures functioning in these six domains on a four-point likert scale ranging from ‘no difficulties’ to ‘cannot do at all’. the wg has developed and tested these questions and found them robust in several countries including lmic (loeb 2012; loeb, eide & mont 2008). despite this rigorous testing, the wg short set of questions has been subject to some criticism. two recent studies conducted in cameroon and india have found that up to 46% of the people identified as having a disability through clinical screening methods were missed by the wg set of questions [international centre for evidence in disability (iced) 2014a, 2014b]. the short set of questions does not necessarily detect people with upper body mobility problems, intellectual disabilities or mental health disorders. in addition, statistical evaluation often uses a disability index method to establish disability prevalence, in the attempt to exclude all people with mild forms of functional limitations that may not actually be disabilities. however, this method could inadvertently be excluding people with disabilities thereby undercounting disability prevalence (statistics south africa 2014). besides these limitations, to date this set of questions is believed to be the most accurate measure that can be included in population-based surveys. box 1: washington group short set of questions on disability as used in the general household survey 2011. the analysis that follows is predominately descriptive focusing on adults of working age, 15–59 years. we assess the impact of disability at the household and individual levels. for the purposes of this paper, taking into account the limitations of the questions asked in the ghs, the wg short set of questions was used to identify households and individuals with disabilities. individuals with disabilities are identified when the survey respondent answered yes to at least one of the wg short set of questions. a household with disabilities was identified as having at least one member with a disability. the educational attainment, employment status and income of individuals are analysed to establish potential opportunity costs of disability. the potential economic impact of disability on the household is examined in terms of household access to income and social security grants. in both the analysis of the individual and household, we look at the earned income from employment, income from other sources and social grants. the dg is separated out from all of the other grants, as it is the most frequently accessed and is the largest grant that specifically targets people with disabilities who are of working age. disability is defined in terms of two degrees of severity. firstly, ‘all degrees of disability’ represents a broad measure of disability, and this is then narrowed down in terms of only capturing severe disabilities as identified by the survey questions. ‘all degrees of disability’ accounts for all those individuals indicating they have at least some difficulty doing at least one of the activities listed in the wg short set of questions (box 1). these activities range from physical and sensory to more cognitive activities. severe disability refers only to those individuals with a lot of difficulty or those unable to perform any one of these activities. it should be noted that the group including ‘all degrees of disability’ ranges from mild to severe disabilities while severe disability only captures those with more severe difficulties; thus, the two definitions are not mutually exclusive. the economic outcomes and exposure to social protection measures are assessed for people with disabilities based on the aforementioned definitions. in addition, we include a disaggregated analysis of disability in this paper, highlighting the difference in outcomes for people and households with regard to the six different disability types measured in the wg set of questions. results individuals the overall prevalence of disability in south africa is 12% based on the 2011 ghs. this includes individuals aged 6 years and older. of this, just over 3% indicate a severe disability. the majority of people with disabilities are of working age as just over 50% of those with all degrees of disability, and nearly 40% of those with severe disabilities, are aged 15–59 years. the analysis that follows therefore deals specifically with the working age population. table 2 presents descriptive statistics showing the prevalence of disability by gender, employment status and earnings. all figures are statistically significant at the 5% level indicating that groups of individuals with disabilities (all or severe) are significantly different from those with no disabilities. income data are based on reported earnings from employment, and the mean estimates are presented here. grant income is separated into two categories to highlight the dg. the category ‘other grants’ includes the oag, cdg, gia, csg, fcg and wvg. in all cases, we present the average income (from employment or grants) for a particular subset of the population. table 2: individual characteristics of people aged 15–59 years. on the whole, women are slightly more likely to report disabilities compared with men. the employment rates for individuals with disabilities are generally lower compared with those with no disabilities, particularly in the group with severe disabilities where only 20% of individuals are employed (table 2). in addition, the data revealed that those with disabilities are more likely to remain out of the labour force compared with individuals with no disabilities. a significantly higher level of inactivity was noted among those with severe disabilities: almost two-thirds of individuals are economically inactive. this may be linked to the likelihood that more severe disabilities can limit an individual’s job prospects thus causing them to remain out of the labour force. people with disabilities also have significantly fewer years of education on average compared to people with no disabilities, which again limits job prospects. in our analysis, people aged 15–59 years with no disabilities have close to 10 years of education on average, whereas those with severe disabilities have at least a third less. not surprisingly the average monthly earned income from employment for people with severe disabilities is r4645.00, which is much lower compared to people without disabilities. however, employed individuals with any degree of disability do not appear to experience lower income levels compared with those individuals without disabilities. on the contrary, this group emerged as higher earners. this may seem contradictory to the conventional wisdom of negative associations between disability status and income. however, upon closer investigation, results show that this positive association could potentially be a result of the younger average age of those without disabilities (table 3). typically, younger individuals starting their careers earn less than those who have been working for a number of years in relatively established careers (becker 1962). in addition, a large portion of individuals with mild visual disabilities were in this sample, and these were identified as the higher earners. table 3: average age of employed individuals aged 15–59 years. households indications of economic vulnerability are also noted at the household level. household characteristics presented in table 4 illustrate a comparison between households with and those without disabilities. all figures are statistically significant at the 5% level with regard to households with no disabilities, showing that households with disabilities are statistically different from those without. household income was calculated by summing the earnings of all employed household members, and we present the average household monthly earnings from employment for our three subsets of the population. other sources of income refer to rental income and any income that is not earned through employment. once again, income from grants is separated out into two categories to highlight the dg on its own. all of these sources of income summed together provide the figures for the average total monthly household income (including grants). table 4: household characteristics. table 4 indicates that the majority of households with at least one individual with any degree of disability reside in urban areas compared to households with no disabilities. however, there are proportionately more households with at least one person with severe disabilities in rural areas. the household size is smaller if there is an individual with severe disabilities living in the household. on average, households with disabilities (any degree) seem to earn more than households with no disabilities. this is because of both income from employment and grant income being significantly higher in comparison. as indicated in table 3, the average age of individuals with disabilities is 46 years (all degrees of disability) which may imply that some of these more mild disabilities relate to the normal ageing process or disease progression. households with at least one individual with severe disabilities, however, earn significantly less compared to both the group including all degrees of disabilities and households with no disabilities. while grant income does succeed somewhat in closing this gap, it is still not enough to enable households with severe disabilities to reach the same income level as those with no disabilities. thus, households with severe disabilities are more vulnerable to poverty. to offer a more in-depth look at the incomes of households with people with disabilities, data were disaggregated by disability type. there are six categories as provided by the survey questions: sight, hearing, walking, remembering and concentrating, communication and self-care. figures 2 and 3 illustrate income from all sources by disability type. the national average household income is r6800 per month; households with all degrees of disabilities typically earn below that except for those with sight difficulties (figure 2). the groups who appear to be most economically vulnerable are those with walking, hearing and remembering and concentrating difficulties. figure 2: average monthly household income, adults 15–59 years with all degrees of disabilities, by type. figure 3: average monthly household income, adults 15–59 years with severe disabilities, by type. for households with people with severe disabilities, income is substantially lower in the case of all disability types (figure 3). the addition of grant income does not succeed in pushing income levels anywhere near the national average. the groups who are relatively worse off are households with at least one individual with severe difficulties hearing, walking and with self-care. these households have, on average, the lowest earned income, which refers to income from employment. in most instances, households including people with any degree of disability have an overall higher level of income compared to those with severe disabilities. however, in the category referring to difficulties remembering and concentrating (figure 3), households with any degree of this disability type earn on average less than those with severe disabilities. the data show that this higher income is driven by both income from employment and increased access to social grants. discussion social protection mechanisms are a new way of addressing structural inequalities in mics such as south africa. it is therefore important to assess how these mechanisms currently reach those in need and how they can be better used to compensate for any inequalities that may exist. the core interest of these mechanisms should lie within the equalisation of opportunities through equitable rather than equal social protection mechanisms. using the ghs and the wg short set of questions, this study is limited by the disability types and economic questions that were asked in this survey. hence, it only covers some disability types and only elements of economic vulnerability. nevertheless, the study highlights that in the context of disability, careful consideration must be given to the diverse, nuanced nature of disability as it relates to type and degree of disability as well as age. previous work has highlighted that the association between disability and characteristics such as gender, geographical location and race multiplies vulnerabilities (stats sa 2014). stats sa (2014) has already provided strong evidence of the double burden women with disabilities face, where women with disabilities are less likely to be employed and if they are employed, they are typically low earners. this article takes the analysis further and discusses the complexity of disability in relation to the degree and type of disability showing how these factors impact economic vulnerability in terms of income, education and employment. it is now a matter of urgency to determine the best possible approach to account for these complexities while developing social protection mechanisms in resource-poor settings. this should be done in a feasible manner without complicating the process of eligibility and assessment. this study illustrates that people with all degrees of disabilities have fewer years of education and are less likely to be employed compared to those with no disabilities. people with severe disabilities in particular are more inclined to be out of the labour force altogether. of those employed, people with all degrees of disabilities earn more on average compared to those with no disabilities. this would seem to contradict the theory, which suggests that people with disabilities are worse off financially relative to people with no disabilities. however, given that this particular group of people includes those with both mild and severe disabilities, and the fact that south africa has progressive labour laws, it is possible that milder disabilities are less affected by socio-economic difficulties. this finding is similar at the household level. further examination revealed specifically that households with people with difficulties seeing (any degree of disabilities) had average incomes comparable to households without people with disabilities. this is largely because of higher earned income (from employment) for this group. given that a large number of these individuals are between the ages of 40 and 59, it is possible that the income results reflect people who acquired visual impairments through normal ageing or disease progression while already being better earners with prior-established careers. milder disabilities, as captured under ‘all degrees of disability’, are also potentially less likely to rely on caregiving as by definition the person has only some difficulty performing an activity (see survey question, box 1). this could then result in less strain on the household in terms of earnings and fewer household opportunity costs in terms of a loss of employment or earnings because of caregiving. in terms of the other disability types, all households (any degree or severe) have considerably less income than households without people with disabilities and lie far behind the national average. given that this is household income, it implies that relatively fewer household members are working or that those who are working are in low-paying jobs. it is possible that a large portion of individuals with severe hearing, walking or self-care difficulties are actually unemployed and may even require care from another household member thus reducing the income potential for that household. social grants do go some way to assist these households, but they are still worse off overall in terms of total average monthly income from all sources. the severe category refers to individuals who have a lot of difficulty or cannot perform a specific task at all. in this case, it is more likely that individuals are unemployed and require care or assistance which means that other household members may have to forgo their own employment. fewer opportunities for earnings result in households with severe disabilities earning just over half the average monthly income of households within the ‘all degrees of disabilities’ category and households with no disabilities. social protection mechanisms in the form of grants have different effects on each group. these grants are equally distributed among all groups; however they are less equitable and do not compensate for the different degrees of economic vulnerability associated with different types and severity of disability. grants only seem to compensate (in terms of bringing total household income somewhat closer to the national average) those households that have people with communication problems. in all other sub-groups this level of compensation has not been reached. however, for some households with people with severe disabilities (hearing, walking) grants almost double household income, which is a considerable achievement for a mic like south africa. for most disability types the overall income of households in the severe disability group is lower than that of those with all degrees of disabilities with the exception of households with people with difficulties remembering and concentrating. in the latter group those households with people with severe disabilities have on average, a higher overall income. this is potentially because of a greater effect of social grants for this cohort or the possibility of measurement error associated with over or under reporting for both mild and severe difficulties. although this analysis for south africa suggests that social grants partially compensate income losses for those households that have people with disabilities (and for some households even up to the level of the average national monthly income), the substantial disability-related out-of-pocket costs are not considered in this data (international labour office & international disability alliance 2015; palmer et al. 2015). these out-of-pockets costs have been described in an earlier study (banks & polack 2013), as well as in an upcoming publication (hanass-hancock et al. 2017). these costs are diverse and can be very high for some groups. therefore, social protection mechanisms need to be designed more equitably and respond to the care and support needs rather than just the identification of disability status. this applies to the dg as well as to the gia and cdg, which are both designed to compensate costs related to increased care. however, the gia is not significant to cover the care and support for people ‘who need full time attendance by another person’ (sassa 2013b) (r250 per month in 2011 and r350 in 2017) which would only realistically cover a caregiver for a few days. the results also indicate that in some cases those in the ‘all degrees of disabilities’ group are less likely to access the dg and this applies in particular to the group of people in the category of remembering and concentrating. this may be an exclusion error related to the eligibility determination process as this type of ‘disability’ is less visible and less likely to be identified or people may be reluctant to be identified as ‘disabled’. these challenges could apply to people with mild intellectual impairments, people with mental health problems, older people or people from the autistic spectrum. social protection mechanisms that also target people with less ‘visible’ disabilities are therefore needed, and, consequently, the current grant assessment procedures may have to be reviewed. the dg assessment process and criteria have not seen any significant changes since its introduction in 1946, except for that described by mitra (2010). ideally, these assessment procedures should follow a targeted, nuanced approach which may involve a more complex process of establishing eligibility for all disability-related grants. this study also poses a question with regard to the purpose of the dg. although the analysis reveals that social grants compensate income losses for those households with people with disabilities, it remains to be shown if the dg is a poverty grant or a grant that tries to provide social assistance to people with disabilities. the two approaches are quite different; while the first has the underlying assumption that people with disabilities are economically vulnerable and less able to participate in the labour market, the latter asks what types of social support enables people with disabilities to participate on an equal basis in society including the labour market. while the former can function as a charity hand-out and may even be seen as a ‘poverty trap’, the latter asks what kind of social assistance will enable participation and independent living (hence is convention on the rights of persons with disabilities, crpd, compliant). to answer the latter, one would have to understand two elements. firstly, the extra costs associated with disability need to be identified which include not only opportunity costs but also costs of disability accommodation, assistive devices, care and support, housing and additional healthcare needs. secondly, the physical and social barriers that people with disabilities experience in all aspects of life need to be identified and removed. this in particular applies to access to transport, buildings, communications and information. ideally social protection mechanisms would then consist of three elements (figure 4): accessible and affordable basic services (health, education, transport), mainstream livelihood programmes including people with disabilities (cash transfers, microcredits, housing, insurance, workplace protection) as well as targeted support for people with disabilities in order to address their households’ disability-related costs (opportunity or out-of-pocket). figure 4: triple social protection mechanisms to ensure participation of people with disabilities. to be equitable these disability benefits need to be measured on the basis of the care and support needs of people with disabilities and not on the basis of fulfilling general disability-eligibility criteria. currently, only people with disabilities who are deemed unfit to work actually qualify for the dg subject to a means test. the dg should become more multifaceted such that people are given sufficient financial support to encourage labour market participation. in addition, if people with disabilities are subject to a means test, the threshold should be higher than that of other poverty-related benefits. this is because disability-related costs remain constant or may increase once a person is able to participate in the labour market (hanass-hancock et al. 2017). the new south african white paper (south african department of social development 2015) particularly focuses on overcoming economic vulnerability for persons with disabilities. it includes an ambitious operational plan and covers all three aspects highlighted in figure 4. the next 5 years will show the extent to which south africa will be able to implement these ambitious targets. to achieve this, south africa needs to enforce a number of its already progressive policies, push towards better accessibility of crucial services (education, health, transport) and monitor its progress towards this new set of goals. attention needs to be paid to the current gaps within the system, which includes access to schooling and employment for specific groups of people with disabilities. currently, we do not understand the resources and cost allocations needed to develop inclusive education, health and supporting services (e.g. transport) such that we reduce the economic vulnerability of people with disabilities (south african department of social development 2016). research in this area is urgently needed for south africa and other lmics. furthermore, our data and other literature suggest that people with mild or less visible disabilities are being excluded from disability benefit schemes and families are sacrificing their own employment and earnings prospects because of caregiving duties as a result of the current lack of state care and support. both mainstream as well as disability-focused research have a key role in describing these opportunity and out-of-pocket costs for this part of the population and provide better evidence on how to design disability inclusive social protection mechanisms that are feasible for countries such as south africa. south africa still has a long way to go to adjust current social protection mechanisms so that they are addressing disability-related economic vulnerability. data and research that can inform this process are still emerging in the country. the experiences from south africa can also inform current efforts by international agencies that are moving towards the inclusion of people with disabilities in the new developmental strategies that target poverty alleviation and social protection in a number of lmics (iced 2014b; international labour office & international disability alliance 2015). agencies such as the international labour office and international disability alliance are already developing a common understanding of the nuanced nature of the disability-poverty nexus, as well as strategies of appropriate and disability-specific practices in terms of social protection that are in line with the crpd (international labour office & international disability alliance 2015). the complexity of this undertaking has been acknowledged, and the experience from south africa provides important data to inform the process of developing disability-specific social protection mechanisms in other countries (international labour office & international disability alliance 2015). acknowledgements we would like to acknowledge nicola deghaye and claire vermaak for their advice during the analysis of the data. we would like to thank stats sa for making the data available and janet whelan for her excellent editing work. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.h.h. wrote the first and final draft of this article. t.c.m. conducted the data analysis with general household survey and wrote parts of the article and conducted a final overall edit of the 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journal of basic income research 3(1), 1–30. statistics south africa (stats sa). 2012. statistical release – p0301.4. census 2011, stats sa, pretoria. statistics south africa (stats sa), 2014, profile or persons with disabilities, census 2011, stats sa, pretoria. united nations (un), 2013a, a new global partnership: eradicate poverty and transform economics through sustainable development, new york, viewed 01 december 2014, from http://www.un.org/sg/management/pdf/hlp_p2015_report.pdf united nations (un), 2013b, releasing the millennium developmental goals and other internationally agreed development goals for persons with disabilities towards 2015 and beyond, a/res/67/140, united nations, new york. world health organization & world bank, 2011, world disability report, who, malta. footnote 1. people who cannot work because of disability. abstract purpose background activities and outcomes discussion and conclusion acknowledgements references appendix 1: monitoring and evaluation checklists. appendix 2: template for individual action plan word picture. footnote about the author(s) ann bullen the chaeli campaign, cape town, south africa rosemary luger the chaeli campaign, cape town, south africa centre for rehabilitation studies, stellenbosch university, south africa debbie prudhomme the chaeli campaign, cape town, south africa martha geiger the chaeli campaign, cape town, south africa centre for rehabilitation studies, stellenbosch university, south africa citation bullen, a., luger, r., prudhomme, d. & geiger, m., 2018, ‘simple ideas that work: celebrating development in persons with profound intellectual and multiple disabilities’, african journal of disability 7(0), a273. https://doi.org/10.4102/ajod.v7i0.273 review article simple ideas that work: celebrating development in persons with profound intellectual and multiple disabilities ann bullen, rosemary luger, debbie prudhomme, martha geiger received: 04 apr. 2016; accepted: 06 nov. 2017; published: 05 june 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the purpose of this article is to share some lessons learnt by an interdisciplinary therapy team working with persons with profound intellectual and multiple disabilities (pimd), implemented in diverse, low-income contexts over a period of 8 years. objectives: the objective of all the activities described here was to provide increased stimulation and development opportunities for persons with pimd within different settings (day care centre, residential centre or family home). method: we used an iterative action-learning approach where we applied existing evidence in the given context, reflected on and adapted strategies in collaboration with stakeholders on a cyclical basis. we focussed on achieving our objectives through ongoing hands-on training of the carers involved with the clients as we felt that by providing them with the knowledge and skills needed, plus ongoing support, these programmes would be more sustainable. findings: it took some time to put systems in place in care settings, but once they became part of the daily routine, they provided increased opportunities for learning for clients with pimd. in addition, there were often marked changes in individual clients’ communicative and physical functioning, which in turn encouraged carers to find new and different ways to interact with, and stimulate, the persons with pimd in their care. conclusion: our hope is that parents and carers or professionals working in the field of pimd in low-income contexts elsewhere may find one, some or all of these simple ideas useful in providing opportunities for learning, development and enjoyment for persons with pimd. purpose the purpose of this article is to share some practical lessons learnt by an interdisciplinary team in the non-governmental sector, working with persons with profound intellectual and multiple disabilities (pimd), in diverse contexts over a period of 8 years. our team comprised a physiotherapist, an occupational therapist, a speech therapist and an educator. the settings included two residential and two day care centres catering for approximately 150 children and adults with pimd in low-income contexts around cape town, south africa. swartz (2014) has identified five interrelated challenges in implementing disability research in sub-saharan africa, namely experience, expertise, enumeration, evidence and expectations. carefully negotiating these strategies, our long-term aim as a therapy team is to implement more rigorous research on effective, culturally appreciative and sustainable interventions for clients with pimd in low-income contexts. in the meantime, we echo the value of sharing ‘what might be described as several of the many straightforward, practical schemes implemented … to achieve very specific goals within particular contexts’ (zimmermann 2005:5). our motivation for this article was a sharing of ideas that others working with clients with pimd can try out and adapt rather than a scientific report. background the population of persons with pimd is described as having a combination of cognitive impairment and neuromotor dysfunction (nakken & vlaskamp 2007). while south africa has some of the most progressive human rights–based policies, the care and development of persons with pimd remains an area not considered a priority with the available resources (adnams 2010; mckenzie, mcconkey & adnams 2013b; western cape high court 2011). this group of clients – and especially those in low-income contexts – along with their parents, carers and rehabilitation professionals face significant challenges (aldersey 2012; dambi, jelsma & mlambo 2015; mckenzie & mcconkey 2016). institutional, residential care is not considered best practice – or even good practice – for children and adults with pimd (goozner 2013; the presidency, rsa 2002; wang et al. 2007). it is, however, a reality in south africa, where some parents cannot cope owing to their employment needs and cannot find other home-based alternatives (mckenzie, mcconkey & adnams 2013a); or where, in extreme cases, clients are removed from their families by the courts in the clients’ best interest. while efforts continue to re-integrate as many persons with pimd in their families and communities as possible, those remaining in institutions have the right to best possible holistic care, stimulation and quality of life in that situation. similarly, while children in south africa have a constitutional right to basic education, those with pimd are excluded from even special schools and thus many attend day care centres for children with special needs where there is no formal curriculum and until recently very limited government support (western cape high court 2011). in most of the centres where members of the chaeli campaign therapy team have worked, the clients’ basic care needs (in terms of washing, feeding, changing and medication) were adequately – and caringly – met. however, most clients themselves were not actively engaged in these activities; moreover, the rest of the time at the day care or residential centre included little or no stimulation. this was partly because of limited human resources where the client to carer ratio was high, the staff did not have teacher training and there was little, if any, therapeutic support other than sporadic visits to individual, hospital-based therapy appointments. ethically, it is difficult in such circumstances to decide who should or should not get therapy input, and under such conditions we confirmed earlier observations that it was impractical to expect carers to implement individual therapy programmes (geiger 2012; van der linde 2014). our goal, as reported in this article, was to find ways to improve the quality of life and functioning of each client with pimd in a variety of areas, including basic interaction and communication, self-help where possible, sensory awareness and processing, positioning and mobility, social skills and cognition through practical capacity-building and empowerment of their carers. what we did and why we adopted an action–learning approach (adams 2010; kemmis & mctaggart 2003; trehan & rigg 2012), which comprises cycles of action, observation, collaborative reflection and adjusted action. three features were closely interrelated, that is, application of existing evidence in the given contexts, reflection and adaptation of strategies in collaboration with stakeholders and ‘iterancy’ (repeated cycles of planning, action, reflection and adjusted action). we also applied an asset-based approach by using resources already available within the specific environment (eloff & de wet 2009) and a systems approach whereby over time we tried to enrich systems or the way routine, everyday things were done within the centre as a whole. this is in line with an ‘ecological’ systems approach, where the focus is upon the person’s environment and the learning opportunities created, rather than just on the person’s impairment (guralnick 2011; patel et al. 2008). to enhance our input, we the authors, all members of the chaeli campaign therapy team, endeavoured to become an interdisciplinary team in terms of the definitive criterion of such a team as proposed by both newell (2011) and repko (2011), that is, integrating elements from diverse disciplines for the achievement of a specific goal. this involved interdisciplinary learning, role sharing, role acceptance and role release, which although initially challenging became easier with experience and as we built trusting relationships among ourselves. in each of the centres supported, we added activities to the existing daily routine (wilder & granlund 2015) that could address the varying needs of the individual clients with the available human resources to complement what was already in place. we collaborated with the relevant facility’s management team to put in place systems that would help in facilitating growth of clients in the diverse areas we had identified. to support these systems, we spent weekly hands-on time in the centres with the carers and clients, role modelling therapeutic activities in group settings and facilitating problem-solving in situ. in addition, we facilitated quarterly workshops for staff using a participatory adult education approach (werner & bower 1982) and concentrated on building upon the skills they already had, taking into account the needs of the specific centre at the time, and accommodating changing needs over time. working in settings over a long period of time allowed us the chance to put in place creative systems to improve individual clients’ opportunities to learn and through this improve their functional abilities, as well as enhance their quality of life. early on with the different centres there was a need to focus on standalone issues like the correct use of assistive devices for positioning and seating, feeding techniques and techniques to help residents cough and clear phlegm, but as these improved the training moved towards general stimulation, effective use of different experiential areas, communication, encouraging clients to become more independent in activities of daily living and using weekly themes to keep things varied and interesting for everyone. finally, the training moved on to how programmes could be effectively monitored and evaluated with a simple checklist being used for self-evaluation by carers as well as evaluation of groups including correct seating by management staff (appendix 1). activities and outcomes nine examples of activities (each based upon specific, collaboratively identified needs, implemented, reflected upon and then adjusted) and their outcomes as per our observations as well as written and verbal feedback from staff are described below. the ‘simplicity’ of these ideas makes them easy to understand and implement elsewhere in a variety of settings. small group stimulation time in centre-based environments, this was usually introduced as a 1–2 h part of the morning routine after the clients’ basic care needs had been met. clients were assigned to a carer according to their age or abilities in groups of six to eight. the small groups started in a circle with a greeting song, followed by a movement activity, art or constructive play, sensory stimulation such as massage, reading of a book or telling of a story and a song to finish off. good positioning of each client on their own seating equipment was the starting point and as the carers became more actively involved in the groups and interested in trying out new activities, it became important to find ways for them to each have their own stimulation time box for which they were responsible. outcomes from clients lying in bed, sitting alone on the floor or being placed in their buggies1 or wheelchairs in a straight line all facing the same direction, there evolved smaller groups in allocated areas facing each other. initially, there was a lot of resistance to this stimulation group ‘adding to the load’ of the carers, plus they preferred to work with each other with larger groups of clients, but over time these small groups became a normal part of the daily routine. carers displayed their own strengths in how they ran their groups and became creative with what activities or subjects they would introduce each day – new songs, objects from outside of the centre (nests, autumn leaves, pictures of their own families and even garden snails!). there was more communication between group members and friendships developed while previously communication was mainly between carers and clients and the carers themselves seemed more energised by this environment. many were surprised by how much the clients in their group could understand and do when given opportunities. toy library toys donated to centres are often not appropriate; therefore, initially time was spent sorting through donations and building up a library of appropriate toys for the specific needs of clients at the centres. the toys needed to be hardy and encourage more constructive play or be useful for sensory stimulation. there needed to be a system that ensured each carer including both day shifts in residential settings was able to access the toy library regularly. support around choosing appropriate toys and activities for the individual group members was provided, especially when there was a change in their functional ability. outcomes although the toy library was initially time-consuming and carers felt little responsibility towards the items, this changed over time. every carer having their own stimulation box or cupboard helped this. the carers became more actively involved in making choices about what to select and were keen to discuss with the occupational therapist in the therapy team what changes were happening with individual group members, likes or dislikes as well as how one could progress the use of items when there were functional improvements. even though there was normal wear and tear of items chosen for the boxes, less of these were misplaced or lost as time went on. over time, it became possible for our occupational therapist to slowly withdraw direct support and hand over this role to a member of the management team. the management teams also learnt which toy donations to include in their wish lists for donors. in the centres where we were involved, it seemed that having the toy library once a quarter was the most sustainable. in another development, different experiential areas were introduced to increase the variety of experiences for clients at the different centres and to give them the opportunity to move away from their usual environment. so, we created spaces for a simple sensory area, a play area and an obstacle course (box 1). box 1: sensory area routine. sensory area although we realised that having a group session was not ideal, we felt that exposing a small group of clients to a variety of sensory experiences would also be valuable. carers with their clients used the routine in box 1 to stimulate the different senses in a designated room where possible or in a quiet corner that could be screened off. outcomes in the beginning, the logistics of a carer taking 6–8 clients (some in buggies or wheelchairs) to a sensory area was a logistical challenge. carers were able to help one another move clients to the sensory area and clear guidelines with photos were also provided to remind carers of the routine, thereby contributing to the sustainability of the programme. in some centres, a timetable needed to be drawn up for sensory room visits. we had initially introduced this to give a sensory experience to the more physically disabled residents who were unable to access other forms of stimulation, but it also turned out to be very useful for the more physically able clients with challenging behaviour. initially it was used as a calming space to manage behaviour when individual clients were overwrought but over time it became a reward for good behaviour. themed room there was a need for some of the higher functioning clients to have more intellectual stimulation than was provided by the daily small group stimulation time. to increase the learning opportunities for these clients, we set up areas to participate in facilitated themed activities, for example relating to phones, babies, animals, cars and occupations (lifter et al. 2011). a routine was again created for carers to use with their small groups starting with a song related to the theme. they then passed relevant items around the group, discussed the theme, for example what sounds?/how do we use it?/look after it?/what does it need?/how many?/what colour? carers then told or read a story related to the day’s theme; there was a time for free play time where the group member could indicate what toy they would like to play with and the groups finished with a repeat of the initial song. outcomes initially, the carers were quite reserved and it became clear that we would need to rekindle their childhood memories of their own experiences of play and learning through our quarterly experiential workshops. through posters setting out the routine for each play theme and, initially, direct support, many of the carers gained confidence and added their own themes, especially when they saw how much clients enjoyed these groups. even those who were quite reserved saw the value of more directed play and were happy to follow one of the routines set out. obstacle course for the independently mobile clients who were typically overweight and unfit, it was important to introduce more physical activity which could be done in a group (hung & pang 2010; park, jeong & bornman 2011). in addition to encouraging daily walks out of doors, it was a relatively easy task to set up a simple, accessible obstacle course. we just needed to find a dedicated space or at least space to store the obstacle course equipment so that it is easy to set up. we chose a few key items (a mat to sit on to sing a song at the beginning and end, a tunnel to climb through, roller to roll over, an area to throw and catch a ball, steps to go up and down, a trampoline to jump on and a balance beam to walk along). to be more inclusive, we also devised an ‘adapted’ version for groups of clients with more severe physical disabilities in wheelchairs and buggies. this included: the roller would be placed on each group member’s lap with their arms over the top (or as close to this as possible) and have their upper bodies moved gently forwards and backwards (to mobilise shoulders and trunk). the caregiver then facilitates each group member to hold a plastic soccer ball and facilitate gentle arm movement up/down/right/left and then throwing of the ball (mobilisation of arms and some sensory input). then, the caregiver would take each group member in their buggy or wheelchair for a trip around the group involving a figure of eight, faster, slower, circles, or whatever the carer felt comfortable doing – preferably to some music. outcomes it was quite simple to set up an obstacle course; it was not as easy to get groups of clients to go through the course in a set sequence, wait for their turn and offer encouragement to others who were taking their turn. many of the clients were afraid of this new experience, while others wanted to rush in and do only the activities they enjoyed. time played an important role as the groups slowly learnt what was expected of them when they came to do the obstacle course. those individuals who were very afraid became more open to the new experiences and those who wanted to rush into it learnt to wait for their turn and, for short periods at least, remain on the mat. the group members became more aware of each other, whose turn it was, who was doing the activity correctly – or not. once again there was more communication among the group members themselves and not just between the carer and each individual. there was lots of laughter (and groans and moans) and most important an opportunity to dispose of some physical energy that comes from being inactive. it also helped to modify challenging behaviour and the indoor activity was especially useful as it was not weather dependent. in addition, the physical endurance of many clients improved, getting up from the floor or going up steps became easier – all of which was useful for getting in and out of transport and for hospital visits and outings and thus facilitating general function and easing of care needs. when first introducing the obstacle course for residents in buggies or wheelchairs, we found many of the group members were passive with several not enjoying having their bodies moved or having objects placed against them. although not all group members came to enjoy this particular activity, it was beneficial to get some physical movement other than being placed in their seating devices, as well as getting some sensory stimulation from the roller/small ball. however, the majority of the group members loved the interaction with the carer and their peers as well as the opportunity to participate in a group and be in a different space. individualised lap tray message for non-verbal clients one of our observations was that visitors to centres were often overwhelmed by the clients with pimd, not knowing how to interact with them. in worst-case scenarios, visitors were afraid of clients and so migrated towards interacting with the more physically able and communicative children and adults. we printed and pasted individually relevant, introductory messages on the tray tables of these residents facing away from the client, so that any visitor or new carer could quickly read and get to know something about the client. these individualised introductions included the resident’s name, what they liked or disliked and a suggestion or two on how to communicate with them through touch and voice. for example: ‘hello, my name is …. i love being spoken to. if you touch my hand gently when you speak to me i can focus on you more easily’. or: ‘hello, my name is …. i love chatting to people. i can look up for “yes” and i blink for “no.” please ask me short questions and give me time to respond!’ or: ‘hello, my name is …. i am sleepy because of my medication. i smile when i like something and i close my eyes if i don’t. hint: gently rub my hands or my back.’ outcomes the lap tray introductions made a big difference; visitors (and the carers themselves) were empowered to interact with the client with pimd. often the request for patience, a calm voice or a gentle touch in the lap tray message helped a visitor to see how the more severely physically disabled clients communicated their pleasure through a small smile or relaxed demeanour. for others, the visitor’s cued questions and comments about the client’s favourite soccer team or tv programme, and so on caused great excitement and enjoyment to both the client and the visitor. it meant that these clients with pimd were included more when visitors came to the centres – and also reduced the stress levels of visitors. they could now easily access the name of the child/adult and had a few practical ideas of how they could start to interact with them. the lap tray introductions needed to be short and written in large font – otherwise new carers and visitors did not read them. we also found that covering the lap tray messages with clear adhesive contact protected them from getting wet or otherwise damaged – yet not too difficult to remove and replace when messages needed to be updated. wristbands for drooling we felt it was important that the clients who had drooling problems became more actively involved in solutions and so gave them the opportunity to use wristbands (such as those used by sports stars) made of absorbent material to wipe their own mouths. in order to avoid unrealistic expectations, three criteria were used to identify clients who could benefit from this programme, that is, they needed to be physically able to reach their mouths with their wrists as well as able to follow the simple instruction to lift their wrists to their mouths and only have a mild to moderate drooling problem (usually only using one bib per day). outcomes it took some time to teach each client how and when to use the wristbands effectively, and then some time supporting carers in reminding these clients at regular intervals to swallow and wipe their mouths. after lots of repetition, most got the hang of it and all of a sudden no longer needed to wear bibs. clients appeared more aware of their appearance and sat/walked more upright and loved the affirmation they got from carers when they remained dry. clients started to indicate they wanted their wristbands put on when they got dressed. many wristbands went missing initially and we learnt the importance of working with the laundry staff/carers/parents in the whole process so that they understood the idea and made sure the wristbands were valued along with the other laundry. individualised seating as seating of the more severely physically disabled clients improved with appropriate assistive devices at the centres, the therapy team realised that the independently mobile clients with intellectual disability did not always have a specific chair to sit on during mealtimes/small group stimulation time. there would be disagreements over who could sit on the available chairs and often clients sat on the floor or inappropriate chairs. this added to the difficulties of carers managing mealtimes/small group stimulation times as a lot of time was spent trying to gather together available tables and chairs. along with management we devised a system that meant everyone could have their own chair with their photo on it. we hoped that these individualised chairs would make mealtimes and small group stimulation time calmer and more effective and would help modify some of the poor behaviour during meals. outcomes this was another enormous learning curve for therapists and management staff on many different levels. there was always the challenge of finding enough suitable chairs, taking appropriate photographs of each of the clients and then finding a foolproof way to stick these photographs onto the chair. no sooner had we started a system than someone would find a way to take it off. it took a lot of time and perseverance from all staff to teach each of the clients about having their very own chair for mealtimes/small group stimulation time and that they should refrain from trying to pull/peel off the photographs. eventually, it was decided to paste the photo on the chair and cover it with perspex which was attached with screws to make it more difficult to remove. duplicates of the photographs were made to play matching games during small group stimulation time to help clients learn about having their own chairs. as some of the clients became more aware of the fact that they now had their own chair they became protective of them and started indicating to others to sit on their own chair. there still remained a need to repair damaged ones on a regular basis, but it made mealtimes and small group stimulation time more ordered for the majority of clients and the carers had more time to facilitate those clients struggling with the concept of using their own chairs. individual action plans one of the difficulties faced when there are a large number of clients and different staff members involved is the difficulty of developing and implementing specific goals for individual clients within the programmes (buntnix & schalock 2010). we developed a word picture for each client noting communally decided goals in five different areas’ needs regarding (1) communication; (2) activities of daily living or sensory input; (3) movement or positioning; (4) socialisation and promoting good behaviour; and (5) knowing and learning (appendix 2) that could be put up along with the client’s photograph and some information about likes and dislikes as well as photographs of their assistive devices. outcomes verbal feedback indicates that individual action plans do make it clearer to all levels of staff involved with the client as to what the goals are for individual clients. it also encourages visitors including parents to support the achievement of these goals. from a management perspective, it is useful in encouraging team discussions and is an easy reference as to what is expected of staff with regard to individual clients. the time involved in keeping the information updated regularly and the displayed document in good repair close to each client was noted as a challenge. discussion and conclusion the implementation of the simple ideas outlined above gave clients in the different settings more opportunities for learning in terms of daily activities and meaningful participation. this improved their physical functioning as well as individual communication strategies as they were challenged more on several different levels, in functional ways for daily-life situations in keeping with the icf (who 2001). furthermore, their carers, who were often surprised at how much clients understood and could do physically, were motivated to challenge them further. clients no longer remained passive recipients of care but enjoyed more of (or even all) the outcomes described by rosenbaum and gorter including fitness, function, friendships, family factors and fun, that most important aspect of quality of life which is so often overlooked in planning programmes for persons with pimd (2011:461). ongoing support, in the form of initial and repeated training and mentoring, of these simple ideas was a key factor in their success. this support focussed on all levels of staff (including cleaners, laundry staff and drivers) understanding the reason why the above systems were being introduced and what was required by each level of staff to make them sustainable. in addition to weekly visits, quarterly workshops focussed on experiential learning with discussions and questions leading to more formal input. these workshops were a wonderful opportunity for staff to reflect on their work within the context of the workshop’s theme, to discuss challenges and successes with specific clients and ‘to tell their stories’ that often led to group problem-solving and support (van der linde 2014). there were many challenges along the way that threatened the success of maintaining these simple programmes, in particular the idea that the carers felt they would add to an already heavy workload. perseverance and knowing our goals had many rewards and feedback from the staff at the different centres indicated that support of the input/strategies devised by the staff themselves during the workshops was what affected change most (staff ‘buy in’). in some cases, there was a need to draw up timetables to clarify when individual staff would be involved in the different programmes. some of the exciting ‘knock on’ effects of these simple ideas included the initiation of a prevocational group for adults at the residential centre, as well as employment of part-time therapists at the day care centres after we withdrew. in conclusion, it was found that implementing an interdisciplinary daily routine was an effective way to introduce an equitable, effective and more holistic programme that could address the varying needs of individual clients with pimd within day care and residential centres in low-resource contexts where the reality is often limited human resources. long-term engagement of an interdisciplinary team (in this case, therapists and an educator) with carers to put in place doable, effective systems that do not add to an already heavy workload and can be sustainable over time without direct therapy support seems to show promise. the simple ideas described in this article are flexible and can be used at home or in different centre-based contexts to encourage interaction, communication, movement and learning in clients with pimd. we hope that sharing these ideas will allow carers and parents to identify what may be relevant for their specific environment, be it a day care or residential centre, or at home. acknowledgements the authors wish to convey their heartfelt thanks and appreciation to the many dedicated and wonderful carers and management teams with whom they have worked at different centres over the years. they have learnt so much from them all along their journey and hope that they have added some value for the carers’ jobs that often entail long hours, hard physical work and little financial reward. this work was made possible by funding from the western cape provincial department of social development and the chaeli campaign. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.b., r.l. and m.g. were involved in running the programme at different centres over a period of 8 years. a.b. wrote the original draft manuscript and r.l., m.g. and d.p. made conceptual contributions and advised at numerous stages. m.g. helped to prepare the final manuscript for publication. references adams, p., 2010, ‘action research’, in n. salkind (ed.), encyclopedia of research design, pp. 5–10, sage, thousand oaks, ca. https://doi.org/10.4135/9781412961288.n3 adnams, c.m., 2010, ‘perspectives of intellectual disability in south africa: epidemiology, policy, services for children and adults’, current opinion in psychiatry 23, 436–440. 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change in sustainability of daily routines and social networks in families of children with profound intellectual and multiple disabilities’, journal of applied research in intellectual disabilities 28, 133–144. https://doi.org/10.1111/jar.12111 world health organization (who), 2001, international classification of functioning, disability and health (icf), world health organization, geneva. zimmermann, r., 2005, small ideas that work, bernard van leer foundation, the hague. appendix 1: monitoring and evaluation checklists. appendix 2: template for individual action plan word picture. name:      age:      individual action plan:      date:      footnote 1. ‘buggy’ – this is the term used in the united kingdom and in south africa for a customised wheelchair which provides full body and head support for individuals who cannot sit independently and who need more support than what conventional wheelchairs offer (http://shonaquip.co.za/product/shona-buggy). abstract introduction methods review findings implications and recommendations conclusion acknowledgements references about the author(s) lumka magidigidi-mathiso centre for interdisciplinary studies of children, families and society, faculty of community and health sciences, university of the western cape, cape town, south africa jose frantz faculty of community and health sciences, university of the western cape, cape town, south africa gerard c. filies interprofessional education unit, faculty of community and health sciences, university of the western cape, cape town, south africa citation magidigidi-mathiso, l., frantz, j. & filies, g.c., 2025, ‘caregiver capabilities: healthcare interventions for children with developmental disabilities’, african journal of disability 14(0), a1563. https://doi.org/10.4102/ajod.v14i0.1563 review article caregiver capabilities: healthcare interventions for children with developmental disabilities lumka magidigidi-mathiso, jose frantz, gerard c. filies received: 21 aug. 2024; accepted: 07 apr. 2025; published: 26 june 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: developmental disabilities (dds) involve impairments affecting children’s abilities, impacting development and necessitating specialised care. many caregivers face challenges caring for these children, lacking access to supportive healthcare interventions. addressing this issue aligns with united nations (un) goals for ensuring access to quality services for children with disabilities and their caregivers. objectives: this study aimed to systematically review and synthesise evidence on healthcare interventions enhancing caregiver capabilities for children with dds, identifying intervention types, components and effectiveness. method: our systematic review analysed peer-reviewed english-language studies from 2014 to 2024, focusing on interventions for caregivers of children with dds. the review investigated healthcare interventions designed to enhance caregiver capabilities across diverse cultural contexts, examining international research to understand strategies supporting caregivers of children with dds. results: we found significant improvements in caregiver well-being through five interventions. parent education reduces stress and improves parenting. peer support decreased isolation while counselling enhanced family functioning. condition-specific interventions increased intervention adherence among minorities. combined interventions showed strong positive effects, especially when tailored. comprehensive programmes greatly improved caregiver quality of life. further research is needed for underserved communities and culturally adaptive interventions. conclusion: our review indicates potential positive parental impacts with limited evidence. small samples warrant future research using larger studies, emphasising rigorous methods, cultural adaptation and diverse community representation. contribution: our review identifies promising intervention types and highlights the need for further research to optimise caregiver support and promote access to quality services. keywords: disability; developmental disability; caregivers; capacity; caregiver; interventions; healthcare; children. introduction background children with developmental disabilities (dds) face immense global challenges, including in african countries with high prevalence rates (arora et al. 2022; olusanya et al. 2018). developmental disabilities are a group of conditions because of impairment in physical, learning, language or behaviour areas that begin during the developmental period and typically last throughout a person’s lifetime. these include intellectual disabilities, autism spectrum disorders, cerebral palsy and other neurological disorders. globally, it is estimated that 13.9% of children aged 2–17 years have dds, with prevalence rates varying across regions (olusanya et al. 2022). in lowand middle-income countries, particularly in africa, the prevalence is thought to be higher because of factors such as malnutrition, limited access to healthcare and higher rates of birth complications. caregivers shoulder substantial burdens, facing barriers such as limited access to services, resources and cultural stigma (abuga et al. 2022; akpeke, agbemavi & adde 2024; nyoni 2021; olaitan & olaitan 2022). in our review, caregivers are defined as the primary individuals responsible for the daily care and support of children with dd. this includes biological parents, adoptive parents, grandparents and other family members who serve as primary caregivers. while we acknowledge that professionals and community members may play supporting roles, our review focuses primarily on family caregivers who bear the main responsibility for the child’s care. cultural factors significantly influence caregiver experiences and the delivery of healthcare interventions. these include traditional beliefs about the causes of disabilities, which may attribute conditions to curses or spiritual factors, influencing help-seeking behaviours (nyoni 2021). additionally, community attitudes towards disability often result in social exclusion of both children and their caregivers, while family structures and gender roles can impact the distribution of caregiving responsibilities (zuurmond et al. 2019). healthcare interventions offer potential support through education, counselling, peer networks (azad et al. 2022; catalano, holloway & mpofu 2018), but evidence on effectiveness and cultural relevance is limited, especially in south african contexts (constantino et al. 2022; nyoni 2021). while some studies explore caregiver interventions in africa (yousafzai et al. 2022; abuga et al. 2022), more research on context-specific, culturally relevant interventions is needed. our systematic review aims to comprehensively explore existing healthcare interventions tailored to strengthen capabilities of caregivers of children with dd. well-being for caregivers of children with dds encompasses multidimensional aspects of their lives, including physical health, psychological resilience, social connectedness and economic stability (boehm, carter & taylor 2021; morin et al. 2023). it involves not only the absence of distress but also the presence of positive experiences, coping abilities and quality of life while managing the complex responsibilities of caring for a child with developmental needs (duran, grimsey & arber 2022; lunsky et al. 2021). interventions for parents of children with dds strategically enhance human capabilities by leveraging multidimensional support mechanisms. these interventions focus on skill development, psychological support and empowerment, systematically transforming parental capabilities through targeted approaches (lancaster et al. 2023; provenzi et al. 2021). by providing contextualised training, peer support networks and practical learning strategies, interventions aim to improve parent–child interactions, reduce psychological stress and build emotional resilience (koly et al. 2021; szlamka et al. 2022). the most effective interventions incrementally develop caregivers’ problem-solving skills, communication strategies and self-confidence, ultimately enabling them to more effectively support their children with dds while simultaneously enhancing their own psychological and practical capabilities (riches et al. 2023). strengthening caregiver capabilities through targeted healthcare interventions has significant implications for reducing long-term social and economic burdens. when caregivers are better equipped with skills and support, there are measurable improvements in children’s developmental outcomes (masi et al. 2021), decreased healthcare utilisation costs (wang et al. 2022), reduced family disruption and increased caregiver workforce participation (lavelle et al. 2023). caregiver capability refers to the dynamic combination of knowledge, skills, psychological resources and social supports that enable caregivers to effectively meet the complex needs of children with dds (derguy et al. 2020; masulani-mwale et al. 2022). the capability approach, as applied to caregiving, recognises caregivers as agents who require certain functioning and freedoms to achieve well-being for themselves and their children (lancaster et al. 2023; provenzi et al. 2021). the economic impact of dds extends beyond immediate healthcare costs to include lifetime support services, lost productivity and educational accommodations, estimated at significant costs that grow over time (rogge & janssen 2022). by investing in caregiver capabilities, interventions potentially mitigate these long-term societal costs while improving outcomes for both children and their families (pickard et al. 2024). methods our systematic review searches included pubmed, cinahl, psycinfo and african journals online (ajol) for studies published during 2014–2024 on interventions targeting parental capabilities for caregivers of children with dd worldwide. predefined inclusion and exclusion criteria focused the review. data were extracted from included articles using a structured form capturing study details, interventions, outcomes, and findings. our systematic review methodology followed the preferred reporting items for systematic reviews and meta-analyses (prisma) guidelines (page et al. 2021). this approach was chosen for its rigour and transparency in synthesising existing research, which is particularly suitable for evaluating healthcare interventions across diverse contexts. the methodological quality of the included studies was assessed using covidence. two independent reviewers evaluated each study across key domains. disagreements were resolved through discussion and consultation with a third reviewer. the quality assessment results were used to contextualise the strength of evidence for each intervention and to identify potential sources of bias that could impact the interpretation of findings. review question: what healthcare interventions are effective in enhancing the capabilities of caregivers of children with dds, and what are their key components and outcomes? population, intervention, comparison, and outcome (pico) framework: population: primary caregivers (parents, grandparents or other family members) of children with dds intervention: healthcare interventions aimed at enhancing caregiver capabilities (including educational programmes, counselling, peer support, combined approaches and condition-specific interventions) comparison: standard care, alternative interventions or no intervention outcomes: improvements in caregiver capabilities (knowledge, skills, psychological well-being, self-efficacy and quality of life) search strategy a comprehensive search of electronic databases was conducted. search terms included combinations of keywords related to caregivers, dds, interventions and capabilities. the full search strategy was developed in consultation with a research librarian. the search strategy aimed to find published and unpublished studies on the topic by searching databases such as pubmed, ebsco host, health source, sage and university of the western cape (uwc) database search, which was accessed via the uwc library, using relevant search terms such as ‘healthcare’, ‘intervention’, ‘disability’, ‘developmental disability’, ‘human capabilities’, ‘interdisciplinary team approach’, ‘parents’, ‘caregivers’ and ‘children’. the identified articles and legislative frameworks were then screened to select relevant studies for our review. data extraction and analysis two independent reviewers screened titles and abstracts, followed by a full-text review of potentially eligible studies. data extraction was conducted using a standardised form, capturing information on study characteristics, intervention details and outcomes. (farajimakin 2024) the study selection adhered to prisma guidelines. from 303 initial records, 248 were screened after removing duplicates. a total of 207 records were excluded, leaving 41 for full-text review, as indicated in the flow diagram in figure 1. twenty-seven were further excluded based on predetermined criteria. ultimately, 16 eligible studies were included in the systematic review, with data extracted into a structured table. figure 1: preferred reporting items for systematic reviews and meta-analyses flow diagram. data analysis we synthesised 16 studies from nine countries (2014–2024) using various designs (qualitative, reviews, mixed methods, randomized controlled trials (rcts) to examine caregiver challenges and evaluate interventions for dds. we conducted a systematic search process, starting with database searches using relevant keywords and then screened titles and abstracts, followed by full-text reviews to ensure studies met all inclusion criteria. this rigorous process yielded 16 studies meeting all criteria and relevant to our objectives. this outcome aligns with findings from page et al. (2021) in their guidance on systematic reviews, which notes that strict criteria often lead to a focused set of studies. similarly, tricco et al. (2018) in the updated prisma statement highlight how the systematic review process typically narrows down a large initial pool of studies to a smaller, highly relevant set. this approach ensures a comprehensive yet focused selection of literature for analysis, as emphasised by page et al. (2021) in the updated cochrane handbook for systematic reviews of interventions. findings integrated caregiver experiences, effective strategies, implementation considerations, intervention effects, common themes such as feasibility and acceptability, and contextual factors influencing effectiveness and implementation. eligibility criteria studies for the review were selected according to the following criteria. inclusion criteria we included studies from 2016 to 2024 on interventions enhancing parenting capabilities for caregivers of children with dds. we focused on human capabilities, interdisciplinary approaches and caregiver interventions reported in english. qualitative, mixed methods, systematic review/meta-analyses and trial were included, with quantitative studies likely employing experimental designs such as randomised controlled trials to evaluate intervention effectiveness on outcomes such as parental stress and child development. study efficacy evaluation our systematic review revealed varying efficacy across interventions. educational programmes consistently improved caregiver knowledge and skills, while psychological interventions showed immediate but not sustained stress reduction. peer support demonstrated reliable improvements in caregiver well-being. multicomponent, culturally adapted interventions yielded the strongest outcomes. however, small sample sizes in many studies limit generalisability, indicating the need for larger, more rigorous trials to conclusively establish intervention efficacy. exclusion criteria the studies that were excluded were those that focused on caregivers caring for children older than 18 years of age, studies not focusing on dd and studies where adults were used as proxies for exploring youth and adolescents’ perspectives. caregiving needs and experiences can differ significantly between caring for minors versus adults. additionally, studies that were not focused on dd or did not include interventions were excluded, as were studies not published in english. intervention efficacy synthesis: alignment with research question and pico when examining intervention efficacy through the lens of our research question and pico framework, the synthesis reveals compelling patterns. among the caregiver population studied, multicomponent interventions that combined educational, psychological and peer support elements demonstrated the strongest improvements in caregiver capabilities compared to single-approach interventions or standard care. educational interventions consistently enhanced knowledge and skills (camdena et al. 2016; provenzi et al. 2021), while peer support interventions effectively reduced isolation and improved psychological well-being (lancaster et al. 2023). psychological interventions showed significant immediate stress reduction but often lacked sustained effects at follow-up (sohmaran & shorey 2019). the most effective interventions were those culturally adapted to local contexts, particularly in resource-limited settings where acceptability and implementation fidelity were crucial outcome determinants. across intervention types, improvements were observed in multiple caregiver capability domains: enhanced knowledge and skills, improved psychological well-being, strengthened self-efficacy and better quality of life. however, the variability in study design, sample size and outcome measures across the included studies limits definitive conclusions about comparative efficacy, suggesting the need for more standardised, larger scale trials. ethical considerations ethical clearance to conduct this study was obtained from the university of the western cape faculty of community and health sciences biomedical science research ethics committee on 17 march 2023 (no. bm23/1/10). review findings our systematic review synthesised 16 studies on healthcare interventions for caregivers of children with dd, published between 2014 and 2024 across nine countries. the studies utilised various methodologies including qualitative (n = 7), systematic reviews (n = 5), mixed methods (n = 3) and randomised controlled trials (n = 2) (see figure 1). we aimed to comprehensively explore existing healthcare interventions tailored to enhance caregiver capability of caregivers with children with dds, with a particular emphasis on african settings. types of caregiver support interventions our review identified several types of interventions designed to support caregivers. these included parent education programmes, counselling and mental health support, peer support groups, combined approaches and condition-specific interventions. parent education programmes focused on enhancing parental knowledge and skills (dababnah et al. 2021), often incorporating culturally relevant content in african contexts and delivered by trained local facilitators to ensure sustainability and community ownership (trani et al. 2020). counselling and mental health support interventions, including individual counselling, cognitive-behavioural therapy and psychotherapy, were employed to address caregiver stress and burden (caicedo 2016). in african settings, these interventions often integrated traditional healing practices and involved extended family members in the process (scherer, verhey & kuper 2022). several studies highlighted the effectiveness of peer support interventions, connecting caregivers with others in similar situations (guralnick 2019). in african communities, these groups often leveraged existing social structures and community networks. some interventions utilised a multifaceted approach, combining education, counselling and home visits to address diverse caregiver needs simultaneously (masulani-mwale et al. 2019). certain studies focused on interventions tailored to specific disabilities, such as autism, addressing the unique challenges associated with conditions (dababnah et al. 2021). analysis and synthesis of interventions our review analysed five key intervention approaches for enhancing caregiver capabilities. parent educational programmes effectively built knowledge and skills through structured curricula, with greater success when incorporating practical skill-building rather than merely providing information. counselling interventions addressed psychological impacts of caregiving, with individual counselling effective for specific psychological challenges and group counselling fostering shared problem-solving. cultural framing significantly influenced engagement. peer support interventions contributed uniquely through experiential knowledge-sharing and emotional validation, proving especially valuable in resource-constrained settings. combined interventions demonstrated synergistic effects by integrating multiple support strategies, with flexible, tailored combinations showing robust improvements across caregiver capabilities. condition-specific interventions effectively built specialised skills for particular dds but were often less effective for broader psychosocial needs. implementation success across all approaches depended on cultural adaptability, accessibility, trained facilitators, practical strategies, appropriate duration with follow-up, family involvement and addressing both immediate and long-term needs. the most promising interventions were contextually appropriate, addressed multiple needs and balanced immediate support with sustainable capability building. duration and intensity of caregiver support interventions the duration of interventions varied widely, ranging from short-term programmes lasting 6–8 weeks to long-term interventions spanning several months or even years. short-term interventions typically focused on intensive parent education workshops, brief counselling interventions and time-limited peer support groups. medium-term interventions often included ongoing parent training sessions, regular counselling appointments and facilitated peer support meetings. long-term interventions frequently incorporated comprehensive family support programmes, ongoing mental health support, sustained peer support networks and regular home visits and follow-ups. content of the intervention services to support caregivers content of the interventions typically covered education about specific dds, strategies for managing challenging behaviours, techniques for promoting child development, stress management and self-care for caregivers, navigation of healthcare and education systems and building social support networks. in african settings, intervention content often emphasised integration of local cultural beliefs and practices, involvement of extended family and community members, addressing stigma and promoting community acceptance, strategies for managing resource limitations and empowering caregivers as advocates for their children. these diverse interventions align with our study research question by demonstrating how healthcare approaches enhance caregiver capabilities across multiple domains, with the pico elements clearly revealing that multicomponent, culturally adapted interventions produce the strongest improvements in caregiver knowledge, skills, psychological well-being and quality of life compared to standard care or single-approach interventions. these findings highlight the diverse range of interventions available to support caregivers of children with dd, with a growing emphasis on culturally adapted, holistic approaches, particularly in african contexts. the variety in duration and content reflects the complex, ongoing nature of caregiver support needs and the importance of tailoring interventions to specific cultural and community contexts. implications and recommendations our systematic review was structured to examine the literature through the lens of the capabilities approach and interdisciplinary approach support for parents of children with dd. the primary objective was to systematically review and synthesise evidence on healthcare interventions aimed at enhancing the capability of caregivers of children with dds, identifying intervention types, components and their effectiveness in strengthening caregiver capabilities. the diverse range of interventions identified directly addresses our research question about effective healthcare approaches for enhancing caregiver capabilities, with the pico framework enabling systematic analysis of how these interventions impact specific caregiver populations, compare to standard care or alternatives and improve outcomes across knowledge, skills, psychological well-being and quality of life domains. from the 16 synthesised articles, we found significant improvements in caregiver well-being through five interventions mentioned below. this means that the systematic review’s findings extend beyond immediate caregivers, offering broader societal implications according to recent research. the diverse range of interventions identified directly addresses our research question about effective healthcare approaches for enhancing caregiver capabilities, with the pico framework enabling systematic analysis of how these interventions impact specific caregiver populations, compared to standard care or alternatives and improve outcomes across knowledge, skills, psychological well-being and quality of life domains. this is substantiated by the evaluation evidence showing that educational programmes consistently improved knowledge and skills (camdena et al. 2016; provenzi et al. 2021), psychological interventions significantly reduced immediate stress (sohmaran & shorey 2019), peer support reliably enhanced well-being and reduced isolation (lancaster et al. 2023) and multicomponent interventions that combined these approaches demonstrated the strongest and most sustainable improvements in overall caregiver capabilities (matthews, puplampu & gelech 2021; riches et al. 2023), particularly when culturally adapted to local contexts (masulani-mwale et al. 2019) interventions enhancing capabilities of caregivers of children with dds can significantly impact community healthcare infrastructure, with the pico analysis demonstrating that effective interventions not only improve caregiver outcomes but also potentially reduce long-term social and economic burdens through decreased healthcare utilisation, improved child outcomes and increased caregiver workforce participation (akpeke et al. 2024; olaitan & olaitan 2022). parent educational programmes several studies (e.g. studies 1, 2, 5, 9, 11, in table 1) highlighted the importance of educational interventions enhancing parental knowledge, skills and empowerment (dababnah et al. 2021; masulani-mwale et al. 2019). this pico analysis underscores the need for government investment in training local stakeholders and community facilitators to deliver culturally competent, sustainable interventions that effectively enhance caregiver capabilities through improved knowledge, skills and psychological well-being, while promoting community ownership and addressing contextual factors that influence intervention outcomes (trani et al. 2020). table 1: characteristics of studies included in the systematic review. counselling mental health interventions such as counselling, cognitive-behavioural therapy and psychotherapy addressed in (studies 6, 10, 13, in table 1) are crucial for psychological distress, caregiver burden and coping challenges faced by parents of children with disability in african communities, indirectly enabling better childcare (keilty & smith 2018; caicedo 2016). cultural adaptation through family-centred, collective decision-making involving extended families is significant. integrating interventions with community support systems such as groups, faith organisations or traditional healers promotes culturally relevant, holistic, sustainable and acceptable care (scherer et al. 2022). peer support studies 11, 12, 15 and 17, in table 1 highlighted the value of peer support groups, mentorship and connecting parents in similar circumstances, reducing isolation and sharing strategies (guralnick 2019). traditional support systems such as extended families, community elders and healers can provide vital, culturally grounded support. integrating these systems into interventions can enhance acceptability and blend traditional and contemporary approaches seamlessly, which aligns with our review research question by addressing how culturally responsive healthcare interventions can effectively enhance caregiver capabilities through improved social support structures (masulani-mwale et al. 2019; nyoni 2021). combined approaches some studies (studies 4, 8, 14 and 16, in table 1) examined combined interventions, combining education, counselling, coaching and home visits, targeting diverse parental needs simultaneously (masulani-mwale et al. 2019). integrated care models combining healthcare, social services and community support can holistically address caregivers’ multifaceted needs. leveraging existing infrastructures and resources enables more effective, sustainable intervention delivery (scherer et al. 2022). condition-specific interventions study 7 and 3 in table 1 focused on interventions tailored to specific disabilities such as autism, addressing unique caregiver needs based on the child’s condition (dababnah et al. 2021). these integrated community resources include culturally grounded peer support groups. the findings highlight the need for a range of supportive, tailored interventions to bolster diverse caregiver capabilities, which directly addresses our research question on effective healthcare interventions for enhancing caregiver well-being and skills (lancaster et al. 2023; riches et al. 2023). limitations of the review our systematic review offers significant insights into caregiver support interventions for children with dd, especially in resource-constrained countries such as south africa. however, it is important to recognise certain methodological constraints. the expedited nature of our review process may have limited the depth of our analysis. by prioritising studies with quantifiable outcomes and modelling approaches, such as those by sohmaran and shorey (2019) who conducted a meta-analysis of stress reduction outcomes, provenzi et al. (2021) who measured specific knowledge and skill improvements, and lancaster et al. (2023) who quantified well-being improvements in peer support programmes, we might have inadvertently overlooked other valuable research paradigms. our reliance on a select number of academic databases potentially excluded pertinent studies from alternative sources. furthermore, our focus on english-language publications from 2014 onwards may have overlooked earlier relevant work or non-english contributions. notwithstanding these limitations, our findings underscore the importance of culturally tailored interventions and pinpoint crucial areas for policy development, practical implementation and further research. these results hold particular significance for caregivers in developing nations such as south africa, where enhancing caregiver capability is a key objective of disability response strategies. this review lays the groundwork for crafting more effective and culturally sensitive interventions for parents of children with dd. to bolster the evidence base and inform more holistic approaches, we recommend additional research that addresses the limitations. this future work will be instrumental in refining and expanding our understanding of effective caregiver support in diverse global contexts. implications of the review the findings of our systematic review have several important implications for practice and policy. firstly, they highlight the need for culturally adaptive interventions, suggesting that policymakers should prioritise the development and implementation of programmes that are sensitive to local contexts and traditions. quantitative evidence from masulani-mwale et al. (2019) demonstrated high acceptability and practicability of culturally adapted interventions, while provenzi et al. (2021) provided measurable outcomes showing significant increases in caregiver knowledge and skills when interventions were culturally tailored. healthcare providers and social services should be trained in culturally competent care delivery. secondly, the varied duration of effective interventions indicates that policy should support a range of short-term to long-term support options, allowing for personalised care plans. this is supported by the quantitative findings of sohmaran and shorey (2019), whose meta-analysis showed stress reduction immediately postintervention but not at 3–6 months follow-up, suggesting the need for ongoing support models. thirdly, the success of peer support groups and community-based interventions suggests that policies should facilitate and fund such initiatives, potentially through community health worker programmes. lancaster et al. (2023) provided robust quantitative evidence through their systematic review of 3,605 participants, showing measurable improvements in caregiver well-being through peer support programmes. finally, the integration of traditional healing practices in some settings implies that policies should consider ways to respectfully incorporate these approaches into formal healthcare systems, where appropriate. by addressing these implications, policymakers and practitioners can work towards more effective, inclusive and sustainable support systems for caregivers of children with dds. effectiveness evaluation our systematic review of caregiver interventions for dd revealed mixed effectiveness across approaches. recent studies (2018–2024) showed varied outcomes in psychological interventions. while sohmaran and shorey (2019) found short-term stress reduction, provenzi et al. (2021) reported better behavioural change outcomes. successful interventions featured personalised support and multidimensional approaches. koly et al. (2021) documented improvements in parent and child interactions, while lancaster et al. (2023) highlighted peer support benefits. cultural context proved crucial, with szlamka et al. (2022) emphasising flexible intervention models. key facilitators included staff continuity and parent empowerment. our review indicates a need for more comprehensive, culturally sensitive support strategies. conclusion our systematic review identified promising healthcare interventions that enhance caregiver capabilities for children with dds (population). the analysis revealed five effective intervention types: parent education programmes, counselling, peer support, combined approaches and condition-specific interventions (interventions). when compared to standard care or preintervention baselines (comparison), these interventions demonstrated measurable improvements in caregiver knowledge, skills, psychological well-being and quality of life (outcomes). however, significant gaps remain in evaluating effectiveness across diverse cultural contexts. future research should focus on: (1) culturally adaptive interventions for varied global settings; (2) optimal implementation strategies within existing healthcare systems; (3) targeted interventions for specific caregiver subgroups such as fathers and grandparents; and (4) condition-specific approaches for under addressed disabilities. strengthening the evidence base requires high-quality, cost-effective studies using rigorous methodologies that measure specific caregiver capability outcomes. interdisciplinary collaborations actively engaging caregivers in research design and implementation will be essential for developing sustainable, culturally responsive interventions that effectively enhance caregiver capabilities while accommodating resource limitations in diverse contexts. ultimately, this approach holds promise for improving both caregiver well-being and child outcomes while potentially reducing long-term social and economic burdens. acknowledgements the authors would like to thank all the participants that took part in the study and for welcoming them with warm hands and sharing their stories. this article is partially based on author’s dissertation entitled ‘developing guidelines to straighten the human capabilities of parents with children with developmental disabilities’ towards a doctoral degree in the centre for interdisciplinary studies of children, families and society, university of the western cape, south africa in 2025 with supervisors professor jose frantz and doctor gerard filies. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.m-m. wrote the article and j.f. and g.c.f. supervised the project. funding information this article was funded by the national research foundation (nrf) (grant number: pmds22070634059). the content is solely the responsibility of the authors and does not necessarily represent the official views of the nrf. data availability the data that support the findings of this study are not openly available because of the 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the author(s) luther l. monareng department of occupational therapy, college of health sciences, university of kwazulu-natal, durban, south africa mogammad s. soeker department of occupational therapy, college of health sciences, university of western cape, bellville, south africa deshini naidoo department of occupational therapy, college of health sciences, university of kwazulu-natal, durban, south africa citation monareng, l.l., soeker, m.s. & naidoo, d., 2025, ‘successful self-employment in microenterprise for persons with disabilities in a rural setting’, african journal of disability 14(0), a1564. https://doi.org/10.4102/ajod.v14i0.1564 original research successful self-employment in microenterprise for persons with disabilities in a rural setting luther l. monareng, mogammad s. soeker, deshini naidoo received: 22 aug. 2024; accepted: 15 dec. 2024; published: 28 feb. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: persons with disabilities are involved in self-employment (vocational rehabilitation) in microenterprises despite key role players not making valuable contributions or using self-employment as a placement option. objectives: this research aimed to explore profitable self-employment microenterprises for persons with disabilities in rural south africa. method: this qualitative research study was conducted in a rural community in kwazulu-natal province, south africa. purposive and snowball sampling were used to recruit 10 persons with disabilities running profitable microenterprises for an average of 5 years each. data were collected using a piloted question guide in a face-to-face interview. thematic analysis followed the hybrid inductive and deductive approaches. results: persons with disabilities participated, and 9 out of 10 were males. two themes emerged. theme one: running microenterprises – self-initiated and maintained. they use their hands and minds to start microenterprises that benefit them and their families. theme two: multiple key role players should be involved in self-employment. persons with disabilities perceive various key role players and themselves as having an active role in self-employment to benefit their microenterprises. conclusion: persons with disabilities in a rural setting engage in successful self-employment in microenterprises, which they self-initiate and maintain. roles and responsibilities of persons with disabilities and key role players in and outside the hospital setting are crucial for those in self-employment. contribution: this research generated contextual data towards the under-researched subject on self-employment for persons with disabilities. keywords: employment; entrepreneurship; income-generation; microenterprise; therapy; vocational rehabilitation; work. introduction in developing countries, such as south africa, unemployment for persons with disabilities is generally high despite national and international bodies calling for their inclusion in employment (department of labour 1998; morwane, dada & bornman 2021). south africa’s soaring unemployment rate is 31.9% (statistics south africa 2023). the highest unemployment rate among the country’s nine provinces is in the eastern cape (38.5%) followed by kwazulu-natal (29.4%), while the lowest is in the western cape (20.2%) (statssa 2023). persons with disabilities make up 80% of the working-age population and face unemployment rates that are approximately twice those of their non-disabled counterparts (blanck et al. 1999; international labour organization 2019; quinton 2014; world health organization & world bank 2011; yamamoto & alverson 2015). furthermore, amid these alarming unemployment statistics, employment in developing countries is generally sought in the informal sector, as evident in south africa (statssa 2019, 2023). mahadea and khumalo (2020) reported that microenterprises (small businesses) make up 75% of businesses globally, contributing about 60% towards job creation or employment. fanta et al. (2017) added that the limited support from relevant key role players contributes to the high failure rates for those self-employed in microenterprises in developing countries. in addition, despite the lack of support, those who are self-employed in microenterprises, including persons with disabilities, prefer to stay in the informal sector as there are limited barriers to entry (mahadea & khumalo 2020). in contrast, there are high costs associated with the formal sector, such as tax and regulations (mahadea & khumalo 2020). furthermore, isaacs et al. (2007) stated that the benefits of self-employment entail that jobs are created in a country to combat unemployment, contribute to economic growth and improve living standards. isaacs et al. (2007) alluded to the importance of starting training at school level, as observed in industrialised countries, to enhance a country’s efforts in self-employment. self-employment or entrepreneurship training increases the chances of succeeding in business as an individual will have the knowledge and skills, that is the know-how to run a business (chimucheka 2014). unlike in the past, modern-day entrepreneurship is taught to anyone willing to be educated, irrespective of their level of education (alberti, sciascia & poli 2004; brockhaus 2001). according to ladzani and van vuuren (2002), beyond training an individual on being entrepreneurial (such as being creative and identifying opportunities) and on business skills (such as managing the business and finances), they deemed motivation to be of significance as it contributes to an individual being able to overcome obstacles, remain inspired and have the ability to seek assistance when necessary. in contrast, wasike and likoko (2013) support customised training in entrepreneurship for persons with disabilities to accommodate their respective needs and ensure equality. furthermore, the hytti et al. (2002) model promotes entrepreneurship education, highlighting crucial aspects such as becoming an entrepreneur and a business manager. the above-stated information suggests that there is a need for necessary resources to be made available or mobilised to make self-employment a reality, especially for vulnerable groups, such as persons with disabilities. however, research shows that resources are generally limited, if not non-existent, in lower-economy countries (maseko et al. 2023; world bank 2022). shakespeare et al. (2019) added that resources are even less in rural settings compared to urban settings. as a result, although entrepreneurship training programmes are available in developing countries such as south africa, training institutions in urban settings are likely to be more resourced than those in rural settings. on the availability of resources in self-employment training institutions, isaacs et al. (2007) reported a challenge in the availability of qualified and trained educators. beyond the necessity of training and an individual’s capabilities towards realising self-employment, binti, siti and buntat (2012) perceive the following to be key role players, namely, the government to create a conducive environment such as offering business grants, cutting the bureaucracy by promulgating laws; family to provide necessary support; and persons with disabilities and communities to work in unity to raise awareness in society. other key role players are therapists who offer services to persons with disabilities, including vocational rehabilitation (buys 2015; soeker 2017), at different levels of care, from specialised hospitals to clinics in communities near service users (van biljon et al. 2016). however, these professionals are unclear about what specific vocational rehabilitation to offer at each level of care, let alone their role in self-employment (monareng, franzsen & van biljon 2018; van biljon et al. 2016). furthermore, chimara, niekerk and van biljon (2022) support overt and transparent self-employment initiatives in low-resourced countries. in addition, gamieldien and van niekerk (2017) call for a collaborative approach and effort by all key role players involved in this field, such as the education sector, social development department, labour department, and trade and industry department. although persons with disabilities are involved in self-employment in microenterprises for income generation, key role players do not seem to be making valuable contributions or using self-employment as a placement option (chimara, van niekerk & van biljon 2021; van biljon, rabothata & de wit 2019), especially in rural settings where there is much need as resources are limited. to make a contextual contribution to the collaborative approach, key role players in self-employment need to explore crucial aspects in this field. aspects such as suitable and successful or profitable microenterprises, how one starts and stays self-employed, and to understand the prominent reason persons with disabilities explore self-employment. research question the research question that this study aims to answer is: ‘what are the key factors that contribute to successful self-employment microenterprises for persons with disabilities in rural kwazulu-natal?’ aim the research study aims to explore successful self-employment in microenterprises for persons with disabilities in a rural setting in south africa. objectives the above-stated research question will be answered by fulfilling the following objectives in a rural setting of kwazulu-natal, south africa: explore persons with disabilities’ experiences in initiating and maintaining self-employment in microenterprises and explore persons with disabilities’ perceptions of key role players in self-employment in microenterprises. research methods and design study design qualitative approach was used in this exploratively designed study (kielhofner 2017) to explore successful or profitable self-employment microenterprises for persons with disabilities in rural south africa. setting persons with disabilities who are self-employed in microenterprises in a rural and low-resourced community of manguzi, kwazulu-natal province in south africa, were interviewed. manguzi is an appropriate setting as it represents a rural setting found in south africa, where persons with disabilities served by professionals in vocational rehabilitation live. study population and sampling strategy a total of 10 participants took part in this research, allowing data saturation, that is when no new data emerged (hennink, kaiser & marconi 2017). purposive sampling was used, followed by snowball sampling to supplement the sample size (hennink et al. 2017). none of the invited participants refused to participate in this research. those included had to meet the following criteria: a south african of working age (18–65 years), run a business for ≥ 3 years or make a living from the business earnings, and live with a disability. data collection a research guide was developed based on literature aligned with this research’s question and objectives. the question guide and probing questions were piloted for reliability and validity. adjustments made to the question guide post the pilot study predominantly were to rephrase and merge similar questions. all semi-structured interviews were conducted one-on-one and face-to-face using persons with disabilities’ preferred language by a trained interviewer with over 20 years of experience in community work. the audio-recorded interviews, 40 minutes each, were transcribed verbatim. data analysis thematic data analysis was done using a hybrid inductive and deductive approach (fereday & muir-cochrane 2006). the nvivo software was used to manage, organise and code the data (fereday & muir-cochrane 2006). data were cleaned by reading each transcript while listening to the relevant audio recording. to enhance rigour (koch 1994), credibility and trustworthiness (aroni et al. 1999), a hybrid approach of inductive and deductive (fereday & muir-cochrane 2006) methods was taken. the main author interpreted the transcribed data and presented it to the other two authors for transparency and further critique (fereday & muir-cochrane 2006), enhancing the rigour of this research. ethical considerations ethical approval to conduct the study was received from the university of kwazulu natal biomedical research ethics committee (brec) (no. brec/00004655/2022). all participants received the research information sheet and signed a consent form. helsinki’s declaration was upheld throughout this research, including voluntary participation and ensuring the confidentiality of data by using pseudonyms (american medical association 2013). results this section presents the participants’ (persons with disabilities) demographics and the two emerging themes. theme one: running microenterprises – self-initiated and maintained. theme two: multiple key role players should be involved in self-employment. demographics the demographics of persons with disabilities who are self-employed in microenterprises are outlined in table 1. out of 10 persons with disabilities, nine were male. all were sole owners of their microenterprises and employed others, and they were between the age of 35 and 63 years. their education levels ranged from no formal education to grade 11. all persons with disabilities had physical conditions. while five of them reported that the disability impacted running their business, four stated that the disability had no impact, and one remained neutral. table 1: demographics of persons with disabilities in self-employment in microenterprises in a rural setting. themes two main themes and their respective categories and subcategories emerged from the data. quotations with persons with disabilities’ initials, gender and age are used to support the findings from the semi-structured interviews. table 2 depicts these two themes, namely, microenterprises and key role players involved in self-employment for persons with disabilities in a rural setting of kwazulu-natal. table 2: themes, categories and subcategories of microenterprises and key role players involved in self-employment for persons with disabilities in a rural setting of kwazulu–natal. theme one: running microenterprises – self-initiated and maintained theme one describes the occupation of self-employment in microenterprises owned by persons with disabilities under three categories as detailed in table 1. these subcategories are discussed in detail. categories of the microenterprises – ‘there are many businesses’ which entail buying and selling, offering services or product production usage of hands and minds by persons with disabilities to engage in various microenterprises: as observable in their environmental and social contexts, persons with disabilities reported that more can be achieved in self-employment when one utilises their functional limbs following an injury or diagnosis. refer to supporting quotes from persons with disabilities as follows: ‘… [t]here are many disabled people that engage in self-employment, as you can see my neighbours that i work with here. they also use their hands to work.’ (ck, female, 57) ‘there is a lot that they [persons with disabilities] can do with their hands.’ (bn, male, 35) ‘businesses are there. there are many businesses that are owned by people with disabilities.’ (sn, male, 52) services and tangible products as part of categories of microenterprises: persons with disabilities indicated that they engage in self-employment by running businesses on a small scale, such as crafts, art, entertainment, repairs, farming and construction. their microenterprises typically involve the production and sale of tangible products, which they either manufacture and sell or procure and resell to customers. examples of these products include, but are not limited to, handicrafts, jewellery and brickmaking. additionally, some of their microenterprises are skill-based or service-oriented, entailing the provision of services such as towing cars, repairs for shoes and electronics repairs, and entertainment services such as stage theatre. the approach used by persons with disabilities to start self-employment – they ‘start anything on a small scale’ to cut costs the existence or non-existence of programmes for persons with disabilities to start microenterprises: persons with disabilities shared their perspectives on available programmes and the importance of training related to self-employment. they reported that they are unaware of self-employment programmes for persons with disabilities. in addition, they emphasised the challenges they face in accessing the opportunities that could assist them in self-employment. following are some supporting quotes from persons with disabilities: ‘no, i do not know anything about that [programmes]. this is new to me. so, i have never met anyone before [talking about that].’ (bn, male, 35) ‘no, i am not aware … sometimes we hear about opportunities [related to microenterprises], but the big problem is that we cannot access them. you find that we hear that there are opportunities for people with disabilities, but in the end, they do not reach us.’ (pm, male, 42) the importance of microenterprise programmes and self-taught skills used by persons with disabilities in self-employment: despite lacking training, persons with disabilities reported that they are in favour of business training programmes. they mentioned that more persons with disabilities would be inclined to pursue entrepreneurial ventures if there were dedicated programmes to provide them with requisite support and guidance. the persons with disabilities indicated that training would enhance their business skills and knowledge, especially those without formal educational backgrounds. they further reported that training would ultimately contribute to improved customer satisfaction. some persons with disabilities shared the following: ‘in fact, i think if there was a programme to begin with, everyone who is disabled would have started a company, knowing that there is that particular programme.’ (hs, male, 51) ‘most of us, especially the older generation, we did not get any formal education because of the circumstances [apartheid in south africa] at that time.’ (tm, male, 45) ‘you need training, you need to learn how to manage and treat people, how to make adverts and so on. all those things are needed. if you do not have those things, then nothing is going to work.’ (sn, male, 52) persons with disabilities reported that they did not receive any training or other self-employment opportunities, largely because of inaccessible resources. they noted that they relied on self-directed learning or started self-employment ventures utilising their innate skills, planning, execution, trial and error, and observation of entrepreneurial peers. some microenterprises required their involvement either physically or cognitively, or in a combination of both capacities. persons with disabilities acknowledged that self-employment is not always easy and reported that they adopt a resilient mindset, avoid quitting and instead persevere, investing effort and demonstrating commitment to remain self-employed. following are some supporting remarks from the persons with disabilities: ‘i started teaching myself at home, sewing a few things … i then expanded my knowledge by doing the work.’ (ck, female, 57) ‘you find that it [self-employment] is difficult even if you are not disabled … it is not like i was presented with an opportunity. i thought hard about it and worked hard to start … there is nothing that says i have to be involved physically in the business all the time.’ (pm, male, 42) ‘i use my hands for some things. i use my brain for some things … you also have to pursue and follow-up on your work once you have started it. you have to keep working on it until you succeed.’ (sn, male, 52) strategic approaches to self-employment: minimising expenses and scaling up gradually in microenterprises: capital and transport were reported as constrained resources that have adverse effects when persons with disabilities initiated their microenterprises, as these are crucial for sustaining day-to-day operations and facilitating business growth. the persons with disabilities problem-solved by saving from their government disability grants, adopting a phased approach to business development by beginning small and scaling and leveraging their home environment by operating rent-free. they also utilised informal marketing strategies, such as word of mouth, to raise awareness among prospective customers about their businesses and the products or services they offer. some persons with disabilities shared the following: ‘[to cut costs] i work from home. people come to me for my services.’ (jm, male, 41) ‘you can start anything on a small scale, but you will eventually reach the level where you are fully self-employed.’ (mb, male, 43) ‘[regarding business growth] things later changed, and now i have people that work for me.’ (bn, male, 35) ‘if you want to reach a certain place at a certain time … transportation is difficult when you are disabled.’ (tm, male, 45) the reason persons with disabilities become self-employed – ‘if you are self-employed, it is different’ for example, it is a form of productivity that allows a sense of control the feasibility and uniqueness of earning a living through self-employment: persons with disabilities provided a rationale for their involvement in self-employment and associated benefits. key factors such as the scarcity of employment opportunities in the open labour market, particularly for persons with disabilities, led to their exploration of self-employment in microenterprises. the benefits highlighted were predominantly at the individual level encompassing financial gains, a sense of control, ownership and self-growth or personal development. following are supporting quotes from some persons with disabilities: ‘if you are self-employed, it is different to when you are employed by someone else … [it is a way to] earn their [persons with disabilities] own money by working with their hands … i know that when people call, they call me.’ (bn, male, 35) ‘[as an owner] it is one way that is almost certain that nothing will disturb your work … i no longer run out of money to buy bread … for us [persons with disabilities] to develop, it is best that we engage in self-employment.’ (mb, male, 43) ‘… [i]t is not easy for us to find employment. [self-employment is for] a person that loves doing what they are doing [to] earn a living.’ (ck, female, 57) ‘[i am] trying to earn a living in business based on my own knowledge.’ (tm, male, 45) persons with disabilities also reported that their self-employment earnings made a contribution to their households, enabling them to earn a sustainable living and positively impact the well-being of their loved ones. some persons with disabilities stated: ‘we [persons with disabilities] do try to engage in self-employment because of the circumstances of life. if you have a family, you have to provide for them.’ (pm, male, 42) ‘[i am self-employed to] make the situation better at home, and life to be better at home, for my family.’ (bn, male, 35) self-employment as a form of productivity for persons with disabilities: persons with disabilities reported that they are motivated and place value in productivity. they believe that although formal work opportunities are generally limited for persons with disabilities, they can still maintain productivity and autonomy by exploring self-employment as an alternative to relying solely on government social initiatives such as disability grants. persons with disabilities stated: ‘actually, we [as persons with disabilities] do not even want that [disability] grant. we take it because there is nothing that we can do. we want jobs. we want to be self-employed.’ (sn, male, 52) ‘[i engage in self-employment to avoid] just staying at home and sleeping the whole time.’ (mb, male, 43) theme two: multiple key role players should be involved in self-employment theme two describes persons with disabilities’ perspective regarding the key role players involved in facilitating their engagement in self-employment included a crucial role played by authority figures and other persons with disabilities. their responses are summarised below. ‘we [persons with disabilities] must rise’ and get involved in self-employment individually and as a collective persons with disabilities value being proactive in self-employment: persons with disabilities perceive themselves as proactive agents in finding and engaging in self-employment thereby enhancing the sustainability of their microenterprises, such fostering customers satisfaction. in addition to deriving personal fulfilment from being self-employed, persons with disabilities acknowledge the importance of self-reliance and proactivity by, for example, pursuing opportunities such as training and business leads. following are some supporting comments: ‘we [person with disabilities] must rise. we must not sit in corners …’ (ck, female, 57) ‘[person with disabilities must] go out to seek assistance.’ (jm, male, 41) ‘[i must] go to look for opportunities as someone that owns a business … if ever i hear about opportunities, i go there.’ (hs, male, 51) ‘we [persons with disabilities] want to be a part of everything that is happening so that we can be visible in the community and to the people that occupy senior positions so that they can see that we also need help at all times, just like all other people.’ (mb, male, 43) persons with disabilities also emphasised the significance of respecting their customers – one of their crucial responsibilities in self-employment being developing effective customer service skills. dedication, putting in the work and delivering high-quality products and services were reported by persons with disabilities as essential for success. following are some supporting comments from persons with disabilities: ‘i can say it is important that when i do my work and do it well, maybe it can encourage another person to not just sit idly.’ (tm, male, 45) ‘[other persons with disabilities] are stressed out and are giving up because things are not going the way they want [but they] must not think just because they are disabled, it means they must produce sub-standard quality of work.’ (bn, male, 35) unity and peer support as motivators for persons with disabilities in self-employment: beyond individual responsibility, mutual support and collective responsibility were emphasised as essential. for instance, they noted it is vital to serve as positive role models and motivate one another, particularly those experiencing challenges in their business or personal lives. persons with disabilities, as key role players, acknowledge the benefits of collaboration and collective action. they also advocate for peer support and uplifting those in need the most. people with disabilities recognise the value of collective strength, and some have initiated collaborative endeavours. for instance, as a collective, they have approached the government and private sector for assistance in their microenterprises. here are some quotes from persons with disabilities: ‘we should help others [persons with disabilities] and explain to them that they should not just sit and expect pity because they are disabled. no! they must also get up and try to do what they can to be able to earn a living. so, we must motivate each other and not be selfish. we should help others. when you see that the other person has a challenge, give them a chance as well.’ (ck, female, 57) ‘those of us [persons with disabilities] who are ahead would have to visit others who are not exposed and tell them about life, what happens when you go out there, and what happens when you stay at home. so, when we tell people about our life experiences, they will realise that we are advising.’ (gm, male, 63) ‘what can make us recognisable is to establish our own thing [work collectively or as a unit].’ (tm, male, 45) ‘we registered companies … right now, we have formed a cooperation or joint venture … we have registered it with the municipality … we are going to seek funding in different departments, including the department of transport and municipalities and elsewhere … we intend approaching everyone [potential funders], including coca-cola, lotto and so on.’ (hs, male, 51) it would help persons with disabilities ‘approaching people [key role players] for assistance’ the involvement of various key role players in different settings: persons with disabilities reported that the key role players who should assist them in finding and maintaining self-employment include government agencies and municipalities, hospital multidisciplinary teams (such as doctors, occupational therapists and physiotherapists) and private institutions. assistance could be with training and funding initiatives. the person with disabilities reported that the government should not only incentivise their businesses given that the administrative processes for running a business are costly, such as company yearly fees, but also cut the red tape or streamline bureaucratic processes. they advocated for simplifying the tender bidding process, rather than rejecting their bids because of perceived documents deficiencies. regarding projects, mainly local or in their area, persons with disabilities felt that those in position of authority should uphold their rights by allocating them the prescribed percentage of work, as per south africa’s procurement law. following are supporting comments from some persons with disabilities: ‘i think the government or those in authority in government, whose job is to look after people with disabilities, are the ones that should fight for our [persons with disabilities’] rights.’ (hs, male, 51) ‘the [government] departments also put age restrictions and tell you about 35 years and so on. all of those things restrict us [persons with disabilities] … when you try to do this, they [government officials] will tell you that something is missing. so, these are the things that make us to end up not succeeding.’ (sn, male, 52) ‘yes, the municipality helps us sometimes or provides sponsorship when there are sporting events. they do help us sometimes.’ (bn, male, 35) ‘there are many [business related] things that are needed [persons with disabilities could use key role players’ help].’ (ck, female, 57) the roles of various key role players in supporting persons with disabilities in self-employment: persons with disabilities reported that beyond assisting with documentation to confirm their disability, hospital staff offer holistic support, including emotional and psychosocial support, such as encouraging them to reintegrate into their lives following an injury or diagnosis. other support mechanisms reported by persons with disabilities are more informal in nature, existing at an individual than a programme level. these initiatives, facilitated by hospital staff, entail assisting persons with disabilities to access business infrastructure, such as a building, and navigate further support services, including business registration. some persons with disabilities had this to say: ‘… [w]e [persons with disabilities] were assisted by the people from the hospital. they found a place for people with disabilities that have skills to work from and be able to earn a living … so, they helped us by getting a person to teach us so i [we] could develop the little knowledge that i [we] had.’ (ck, female, 57) ‘they [key role players] play a role in ensuring that they help us [persons with disabilities] or guide us to platforms where we can get help.’ (mb, male, 43) ‘[professionals advise us] not to stay at home because staying at home would mean that i just sleep and wake up and sit on the wheelchair.’ (jm, male, 41) discussion the study explored persons with disabilities’ experiences in initiating and maintaining self-employment in microenterprises and their perceptions of key role players in self-employment in microenterprises. the demographics will be discussed first. demographics the participants had physical disability and limited literacy levels. they shared similar demographics with those reported in the literature (monareng et al. 2021; shakespeare et al. 2019; viriri & makurumidze 2014; wasike & likoko 2013) as their education level ranged from no education to grade 11. all participants were adults of working age between the ages of 35 and 65, mostly males. these findings align with those reported in other research (gamieldien & van niekerk 2017; monareng et al. 2021; wasike & likoko 2013). furthermore, persons with disabilities in this research had an average of six dependents. these findings are corroborated by a study conducted by waskike et al. (2013), where the participants’ average number of dependents was less than 10. the participants were single and sole owners of businesses with an average of 5 years of self-employment (alcock 2018). this period exceeds the 3-year survival threshold, during which start-up businesses will likely fail (alcock 2018). overall, these findings confirm that persons with disabilities in this research successfully operated microenterprises. persons with disabilities’ experiences in initiating and maintaining self-employment in microenterprises persons with disabilities in the rural setting of kwazulu-natal leverage available resources to engage in self-employment in microenterprises (american occupational therapy association 2020), which provides them with a livelihood. these findings align with pagán’s (2009) findings on self-employment being a preference or an alternative over conventional work among persons with disabilities (gamieldien & van niekerk 2017). regarding the types of microenterprises, findings in this research are consistent with those found in other parts of south africa (charman et al. 2017; gamieldien & van niekerk 2017; maziriri, madinga & lose 2017; rogan & skinner 2018; valodia 2007) and mirrored in other african countries such as, but not limited to, kenya, malaysia, sierra leone and tanzania (binti et al. 2012; daniel 2019; shakespeare et al. 2019; witchger hansen & blaskowitz 2018) where products are sold or services are rendered. these types of businesses exist in ordinary community settings and are significant in that they address community daily needs. persons with disabilities utilise their remaining functions, such as functional upper limbs (to produce products) and executive cognitive function (for planning and problem-solving), to engage in and perform business tasks so that they can earn and provide for their families (gamieldien & van niekerk 2017; morwane et al. 2021). the limited resources in contexts such as rural areas do not permit the traditional business set-up procedures (blanck et al. 1999; isaacs et al. 2007; wasike & likoko 2013). for instance, formal business training, capital and support are essential components of business, but they are not accessible to persons with disabilities in the rural setting of kwazulu-natal. these are similar challenges faced by those operating businesses in low-resourced urban settings such as sebokeng township in gauteng, south africa (charman et al. 2017; maziriri et al. 2017; wasike & likoko 2013). consequently, persons with disabilities overcome and adapt by starting where they are with what they have (daniel 2019; shakespeare et al. 2019). they cut costs related to their operations, such as starting at home without rent or not purchasing a business site (lorenzo, van niekerk & mdlokolo 2007). such initiatives enable them to conserve resources and avoid travel and daily set-up costs, synonymous with a microenterprise without a permanent business site (charman et al. 2017; daniel 2019; gamieldien & van niekerk 2017). while some participants received informal training or apprenticeship from a relative or friend, some were self-taught entrepreneurs who relied on trial and error and continuous problem-solving (wasike & likoko 2013). these findings highlight how feasible it is for persons with disabilities to engage in self-employment despite challenges and insufficient resources. the small sizes of these microenterprises require less capital or funding to start (yu & roos 2018), that is, fewer barrier to entry (mahadea & khumalo 2020). such funding could be raised from close social networks, such as friends and family (mersland 2005), who in turn support the business in the form of labour or becoming customers (gamieldien & van niekerk 2017; van niekerk, lorenzo & mdlokolo 2006). on the other hand, some microenterprises may be self-funded using a government disability grant (south african government 2023). the usage of disability grants in this instance is contrary to the study conducted by engelbrecht and lorenzo (2010), which indicated that a disability grant may perpetuate disempowerment in cases where the recipients are passive or show no interest in being productive. as such, given the complexity of challenges associated with self-employment, the nature of these businesses requires sustained patience and commitment (isaacs et al. 2007; lorenzo et al. 2007). this may imply that benefits, such as earnings, may not always be immediately tangible or consistent, as they can only be fully realised later. there are benefits beyond starting the microenterprises out of necessity, which may entail, but are not limited to, enhanced self-subsystem or efficacy, such as motivating persons with disabilities to aspire to and lead a positive, meaningful life (soeker, abbas & karachi 2023). other benefits for persons with disabilities who are self-employed include becoming active community members and having the ability to provide (gamieldien & van niekerk 2017; shakespeare et al. 2019). these benefits align with the fulfilment of key health determinants and contribute towards living above the poverty line (gamieldien & van niekerk 2017; naledi, barron & schneider 2011). other benefits, which are not the primary motive for such businesses, are securing a permanent business location (lorenzo et al. 2007) and expanding their operations through hiring (gamieldien & van niekerk 2017; shakespeare et al. 2019), that is growing the business. despite persons with disabilities’ reasons for getting into self-employment, they need targeted training and support for adequate structures and systems that enable sustainability (chimucheka 2014; isaacs et al. 2007; wasike & likoko 2013). persons with disabilities’ perceptions of key role players in self-employment in microenterprises according to the persons with disabilities in this study, the responsibilities and roles of persons with disabilities in self-employment are not only towards themselves but also towards their customers and fellow persons with disabilities (shakespeare et al. 2019). they must be proactive in upskilling themselves to advance business operations and leverage opportunities in their communities (maseko et al. 2023), such as at the municipality level. moreover, the participants in this study held themselves to open-labour market standards and espoused the need to be dedicated and committed (shakespeare et al. 2019), and to use a customer-oriented approach (gamieldien & van niekerk 2017) as well as not use their disability as an excuse for offering inferior products or services. supported by shakespeare et al. (2019), persons with disabilities perceive role modelling by peers who are ahead in microenterprises, as essential. furthermore, persons with disabilities often operate more in isolation, although they perceive networking and information sharing as crucial (maziriri et al. 2017; viriri & makurumidze 2014). they believe supporting each other will contribute towards sustaining their businesses. despite lacking the necessary resources, one would conclude that they perceive themselves as a homogenous group with shared interests and needs, hence the act of collegiality. one participant stated: ‘we [persons with disabilities] must rise’ (ck, female, 57), emphasising togetherness. although persons with disabilities, in this study, reported on the importance of receiving assistance with self-employment in microenterprises in and outside the hospital setting (morwane et al. 2021; van biljon et al. 2016), the aid was found to be insufficient. in a hospital setting, vocational rehabilitation in south africa typically occurs after medical intervention or when suitable persons with disabilities are medically stable (pefile, mothabeng & naidoo 2016; van niekerk n.d.). work placement options, such as self-employment (chimara et al. 2022; gamieldien & van niekerk 2017), should ideally be initiated during the holistic rehabilitation phase before persons with disabilities leave the hospital. a professional in the community should carry over this service as part of primary healthcare re-engineering (naledi et al. 2011). similarly, chimara et al. (2022) and maseko et al. (2023) stated that for sustainability, an intervention must extend beyond the hospital setting, especially in low-resourced countries or settings. outside the hospital setting, leading professionals and community key role players, such as the government, private, business or non-government organisations, should collaborate to ensure continuity of intervention and sustainability of services. the key role players can do such by offering necessary services to persons with disabilities, such as psychosocial support, physical rehabilitation and business income generation projects (lorenzo et al. 2007; mahadea & khumalo 2020; parker 2012; soeker 2017). the government should facilitate a conducive self-employment environment at the legislative level (mahadea & khumalo 2020; pefile et al. 2016). maseko et al. (2023) found that initiatives based in the community are beneficial as they reduce costs and are effective if run well. furthermore, they recommended that for effective, sustainable interdisciplinary community-based intervention and collaboration, the following models should be incorporated: shared care model, self-management model and community-based rehabilitation model. coordinating such initiatives and implementing such models would benefit persons with disabilities, including those in self-employment, such as those in this research. conclusion in the rural context of kwazulu-natal, the findings from this study indicate that persons with disabilities engage in self-employment in microenterprises, which they self-initiate and maintain or sustain. this research also provides insight into how persons with disabilities start their microenterprises and their rationale for pursuing self-employment. although a challenging and demanding field, persons with disabilities demonstrated proactivity and resilience in overcoming associated challenges such as limited access to resources. the benefits of self-employment were evident, including reintegrating persons with disabilities into their communities and enabling them to provide for their families. the findings also revealed that self-employment roles and responsibilities of persons with disabilities and key role players based in and outside the hospital setting are essential in facilitating successful self-employment outcomes. this includes providing assistance with psychosocial aspects and referring further where necessary. moreover, community resources must be mobilised and leveraged to support persons with disabilities in self-employment in microenterprises after discharge from the primary admission institution. ultimately, this study’s findings should inform those involved to better understand this occupation and effectively mobilise community resources to support persons with disabilities. implications and recommendations the implications and recommendations of this research are: the limited availability of recent research on persons with disabilities in self-employment presents a notable knowledge gap. to address this shortfall, future studies should focus on producing timely, diverse and context-specific data through engagement with key stakeholders, such as service providers, disability advocacy groups and policymakers. key role players in self-employment should foster an enabling environment that encourages, mobilises and supports persons with disabilities. peer support networks could be facilitated through support groups among persons with disabilities who have similar interests and needs in the community. a comprehensive directory of successful or profitable self-employment microenterprises must be compiled, particularly in resource-constrained areas. to gain a more nuanced understanding of this field, future research should undertake a comprehensive analysis of microenterprises, including, but not limited to, compiling a list and providing a detailed examination of their operational structures and processes. colleagues involved in vocational rehabilitation are encouraged to consider including findings from this research in their practice and curriculum (for those in academia and special needs schools, respectively). those involved should find, capacitate and explore innovative strategies to enhance their services beyond the hospital setting and incorporate self-employment in microenterprises for persons with disabilities. the government should develop targeted strategies around disability grants and incentivise self-employment initiatives by persons with disabilities. a policy brief on this subject should be considered and directed to the government. strengths and limitations strengths this research adds knowledge to the limited field of self-employment, specifically for persons with disabilities in an african context. limitations although not an explicit exclusion or inclusion criterion, this study could only reach persons with physical disabilities. future research should consider participants with other disabilities, for example, mental illness. although the findings are valuable, generalisation may be challenging, given the small sample size, which is synonymous with qualitative studies. acknowledgements competing interests the author reported that they received funding from university capacity development grant funding (ucdp), the university of kwazulu-natal, university of kwazulu-natal’s step up programme, department of higher education and training (dhet) and the newton fund, which may be affected by the research reported in this article. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions l.l.m. was responsible for conceptualising, collecting data, analysing the data and drafting this article. m.s.s. and d.n. assisted with conceptualisation, guidance and critical reviews throughout the article writing process. funding information this research was supported by the university capacity development grant funding (ucdp), the university of kwazulu-natal, the university of kwazulu-natal’s step up programme, department of higher education and training (dhet) and the newton fund. data availability the data that support the findings of this study are available on reasonable request from the corresponding author, l.l.m. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this 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people with disabilities in tanzania’, annals of international occupational therapy 1(3), 157–168. https://doi.org/10.3928/24761222-20180926-01 world bank, 2022, new world bank country classifications by income level: 2022–2023, world bank group, washington, dc. world health organization & world bank, 2011, world report on disability, world health organization, geneva. yamamoto, s.h. & alverson, c.y., 2015, ‘factors of successful self-employment through vocational rehabilitation for individuals with disabilities’, journal of career assessment 23(2), 318–335. yu, d. & roos, p., 2018, the south african labour market, van schaik publishers, pretoria. abstract background methods results and discussion conclusions acknowledgements references appendix 1: the mean (sd) of the cop parameters for eyes open and closed trials. about the author(s) yolandi brink division of physiotherapy, stellenbosch university, south africa john cockcroft division of physiotherapy, stellenbosch university, south africa soraya seedat department of psychiatry, stellenbosch university, south africa philip may department of nutrition, university of north carolina, united states nutrition research institute, kannapolis, united states wendy kalberg center on alcoholism, substance abuse, and addictions, the university of new mexico, mexico quinette louw division of physiotherapy, stellenbosch university, south africa citation brink, y., cockcroft, j., seedat, s., may, p., kalberg, w. & louw, q., 2018, the postural stability of children with foetal alcohol spectrum disorders during one-leg stance: a feasibility study’, african journal of disability 7(0), a319. https://doi.org/10.4102/ajod.v7i0.319 original research the postural stability of children with foetal alcohol spectrum disorders during one-leg stance: a feasibility study yolandi brink, john cockcroft, soraya seedat, philip may, wendy kalberg, quinette louw received: 23 sept. 2016; accepted: 01 dec. 2017; published: 29 mar. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: postural control may be impaired in children with foetal alcohol spectrum disorders (fasd). the study assessed the protocol feasibility in terms of (1) recruiting children with fasd in a rural, small town; (2) using the measurement instruments in a real-life setting; (3) the one-leg standing (ols) task and (4) presenting preliminary results on postural stability of children with and without fasd. methods: nine-year-old children diagnosed with and without fasd were invited to participate. twenty-eight children performed ols. feasibility outcomes included recruitment, measurement instrument use and task instruction. postural stability outcomes included standing duration, centre of pressure (cop) and body segment acceleration. results: participants recruitment was feasible in terms of the (1) ability to sample a reasonable participant number in a rural town setting and the capacity to increase the sample size if more schools are included in the sampling frame and (2) use of assent and consent forms that were appropriate for this population. the measurement instruments were user-friendly, cost-effective and time-efficient. instructions for the task require amendment to address foot placement of the non-weight–bearing leg. there was a significant difference between cases and controls on mean cop velocity (p = 0.001) and the pelvis segment acceleration in the mediolateral direction (p = 0.01) and the anteroposterior direction (p = 0.027). the control children took longer to achieve postural control. the girls demonstrated a significant difference for the cop anteroposterior displacement (p = 0.008) and velocity (p = 0.049). conclusions: the recruitment of children with and without fasd in a rural, small town and the administration of measurement instruments in a real-life, school-based setting was feasible. however, the verbal instructions for the task require revision. the male control group took longer to achieve postural control because the task was performed differently between the two groups. however, the case girls were slower to achieve postural control than control girls though performing the task similarly. background foetal alcohol syndrome (fas) represents the extreme end of a continuum of foetal alcohol spectrum disorders (fasd) and is the most common birth defect in south africa, affecting more than one million south africans (bulletin of the world health organization 2011; riley, infante & warren 2011). extensive research of fasd, which includes fas, partial fas (pfas) and alcohol-related neurodevelopmental disorder (arnd) has been conducted in rural or small-town settings in the western cape province of south africa, where 13.5%–20.8% children have been diagnosed with fasd (9.1%–10.0% with fas; 7.0%–7.5% with pfas; and 4.7% with arnd) (may et al. 2013; olivier et al. 2013). this far exceeds the rates reported in other in-school studies internationally (may et al. 2009). the high occurrence of fas in the western cape places a significant economic burden on the country as the estimated annual burden spent on the management of children with fas is about 5% of the 2010/11 department of health’s budget (crede et al. 2011). because fas is entirely preventable, preventive efforts would yield significant healthcare cost savings (chersich et al. 2012). however, the occurrence of fas in the wine region of the western cape has not reduced over the past decade (crede et al. 2011). therefore, cost-saving intervention strategies to improve the overall health of children with fas are needed. foetal alcohol syndrome is diagnosed based on: growth retardation (below 10th percentile for either height or weight), central nervous system dysfunction, characteristic facial anomalies and confirmation of maternal alcohol exposure (frost, gist & adriano 2011; may et al. 2013; simmons et al. 2010). in children with fasd, neuroimaging studies have shown size reduction of brain structures, that is, the cerebellum, corpus callosum and basal ganglia (roussotte et al. 2012; spadoni et al. 2007). the cerebellum and the basal ganglia, which seem to be particularly vulnerable to prenatal alcohol exposure (pae), are associated with motor functions such as posture, balance, coordination, motor programming and procedural learning (domellof et al. 2011; spadoni et al. 2007). research has indicated that children with pae or fasd display postural control deficits, decreased gross and fine motor coordination, increased postural sway and delayed temporal processing and atypical temporo-spatial trajectories of motor tasks (adnams et al. 2001; barr et al. 1990; domellof et al. 2011; kalberg et al. 2006; kooistra et al. 2009; roebuck et al. 1998a, 1998b; simmons et al. 2010). these motor deficits may be related to the teratogenic effects of pae on structures of the central nervous system. these motor deficits are likely to persist into adulthood, which underscores the importance of early detection of motor function problems related to fasd. to our knowledge, only two studies (kooistra et al. 2009; roebuck et al. 1998a), incorporating the use of objective measurement (i.e. a force plate), have described postural stability of children with fasd. these researchers reported centre of pressure (cop) displacement during standing. however, the authors reported inconsistent findings. postural stability or control refers to the ability to control the orientation of body segments and to maintain the projection of the centre of gravity (cog) within the base of support (shumway-cook & woollacott 2001). this cog oscillates as a result of nonlinearities of neuromuscular control and is referred to as postural sway. cog displacements are transmitted to the support surface as a compound measure of cop (blaszczyk, lowe & hansen 1994). cop parameters constitute an indirect method of describing postural control or balance and reflect the ability of the body to adjust accordingly to maintain balance. no research describing the postural stability of south african children with fasd, using objective measurement methods, has been published. domellof et al. (2011) affirmed the importance of specialised motion analysis techniques to investigate the motor control abnormalities of fas children. therefore, further investigation using objective, specialised motion analytical approaches is warranted to obtain objective evidence underpinning the motor ability of children with fasd on which early screening and future interventions can be based. the aim of the feasibility study was to assess the appropriateness and practicality of the study protocol in terms of (1) recruiting children with and without fasd in a rural, small-town setting; (2) using the measurement instruments in a real-life, school-based setting; (3) the one-leg standing (ols) task; and (4) to present preliminary results on postural stability of children with and without fasd as a means to inform future research on sample size calculation and to describe any potential differences between the two groups. methods study design, setting and population a feasibility study was conducted in a rural town in the western cape of south africa. this area has a high prevalence of fasd and is an official fasd research site for a large collaborative research project. the study population consisted of 9-year-old boys and girls attending primary schools in the town or surrounding farm schools, diagnosed with fasd (cases) or with no pae (controls). the fasd and no pae diagnoses were based on the diagnostic procedures described by may et al. (2013), who previously screened these grade 1 learners when they were 6 years of age (may et al. 2013). the age group was conveniently chosen because, at the time of the study, most of the screened children would have reached the age of 9 years. participants sampling method we obtained the names of all 9-year-old boys and girls attending three town schools and four farm schools who were previously screened for fasd and captured on the research database of the study conducted in 2011 (may et al. 2013). the four farm schools were situated within a 10-km radius of the town. our sampling procedure aimed for the inclusion of at least 12 children (cases) from one of the three diagnostic categories of fasd (arnd, pfas and fas) and 12 control children based on no pae. an equal distribution of boys (n = 12) and girls (n = 12) was sought. inclusion and exclusion criteria boys and girls (1) aged 9 years; (2) diagnosed with either arnd, pfas and fas or no pae when they were 6 years old; (3) still attending one of the seven selected primary schools; (4) and from whom parental or guardian and child written informed consent have been obtained were eligible to participate. children diagnosed with neurological, musculoskeletal or movement disorders other than those associated with pae were excluded (e.g. attention deficit disorders and developmental coordination disorder) (kooistra et al. 2009). measurement instruments inertial and magnetic measurement system an inertial and magnetic measurement system (imms) provides three-dimensional (3d) orientation, acceleration and angular velocity data of human movement. we used a wireless imms (mtw, xsens technologies, b.v.), which has been shown to describe human motion accurately in research and clinical settings (guo et al. 2013; saber-sheikh et al. 2010; zhou et al. 2008). dynamic pressure mapping system dynamic pressure mapping systems measure force distribution on a contact surface during sitting, standing or gait. we used a portable pressure-sensitive mat (matscan, tekscan inc.) which is lightweight and easy to use. the matscan software allows for real-time and offline viewing of the plantar pressure distribution and cop position when a subject is standing on the mat (brenton-rule et al. 2012). balance task all participants performed barefoot ols on both legs with eyes open and closed resulting in four conditions (de kegel et al. 2011). each participant was given standard instructions. for the eyes-open trials, the participants were told (1) to stand on one leg for as long and as still as possible, (2) that the non-weight–bearing leg (nwb) may not touch the weight-bearing leg or touch the floor, (3) to focus on a picture approximately 3 m away at eye level, and (4) to allow the arms to hang free at the sides (de kegel et al. 2011). if participants could not maintain a neutral hip alignment and 90° knee flexion (as demonstrated), they were allowed other one-leg stance positions as long as they adhered to the criteria mentioned above. the capture commenced when the foot lifted from the pressure mat. for the eyes-closed trials, similar instructions were given except that the participant was asked to first lift the foot and then close the eyes once steady. the capture commenced when the eyes closed (geuze 2003). feasibility outcomes recruitment accessibility to an adequate number of eligible participants and comprehension of assent and consent forms given to participants and parents, respectively, were defined as outcomes. we evaluated the comprehension of consent and assent forms by parents and participants based on questions that were raised during the consenting process. measurement instruments we looked at the adaptability of the measurement instruments to different classroom set-ups and the user friendliness of the measurement instruments to the participants and the operator. balance task (one-leg standing): we considered the verbal and visual instructions given by the researcher to the participants and the actual performance of the participants observed via video recording and its correlation to the postural stability data obtained. postural stability outcome measures table 1 lists and explains the postural stability outcome measures that were included in this study. table 1: the postural stability outcome measures. procedure all eligible children were invited to participate in the study and received assent forms (for the participants) and written informed consent forms (for the parents). the postural stability measurements of those consenting participants were captured at the schools during school hours. the participants were dressed in sport shorts and t-shirts provided by the researcher. the researcher (y.b.), blinded to the diagnosis of the participants, explained the procedure to all participants. the researchers (y.b. and j.c.) were only informed of the children’s diagnosis once all data were captured. height and weight measurements were taken by a research assistant. the researcher (y.b.) attached the three inertial sensors on the head, thorax and pelvis segments using adhesive tape as shown in figure 1. the head sensor was kept in place by a headband so that the sensor was positioned in the centre of the forehead, the thorax sensor was positioned over the manubrium using double-sided tape and the pelvic sensor was kept in position over s1 via a pelvic belt (whitney et al. 2011). figure 1: placement of the xsens sensors on a participant. the imms were calibrated prior to data collection to track movements of the body segments in the anatomical planes of motion. this was done using a static trial in which the participant assumed a neutral standing posture in a magnetically clean zone (cereatti et al. 2015; morton et al. 2013). the researcher provided verbal instructions and demonstrated the task. the participant performed the eyes-open trials first, then the eyes-closed trials and was given a choice of which leg to be tested first. the participant received two opportunities (lasting up to 20 s) for each condition (de kegel et al. 2011; geuze 2003). data processing of postural stability outcomes for the time variable, the duration of successful ols was recorded observationally via the matscan software. time was recorded up to 20 s while the foot remained in contact with the pressure mat, and the nwb foot did not make contact with the floor. for the cop displacement and mean velocity outcomes, the best trial was chosen based on the longest period of no shuffling (some participants changed the direction of foot placement on the mat) (giagazoglou et al. 2013; zumbrunn et al. 2011). if both trials were performed without any shuffling and for the full 20 s, the first trial per condition was selected for analysis. for the cop analysis, a successful eyes-open trial meant no shuffling for the first 7 s of the trial (geuze 2003), whereas it was deemed successful for the eyes-closed trial if the participant did not shuffle for the first 3 s of the trial (zumbrunn et al. 2011). the start and end times of the first sufficient portion of time in which no shuffling occurred were identified for each trial through visual inspection of the plantar pressure distribution. these times were exported together with the cop data to a custom matlab algorithm, which calculated the cop range and mean velocity outcomes for the selected period of the trial data. the mlvel and mlmax were assumed to be parallel to the axes of the matscan system as the subjects’ feet were aligned accordingly during testing. to obtain the accelerometry parameters, the same trials were analysed for the same duration of time as for the cop parameters. we imported the imms orientation data and dynamic acceleration data from the xsens data files into a custom matlab script. the imms orientation data from the static calibration trial were first used to calculate the standard sensor-to-segment coordinate frame transform. this transformation was a rotation matrix which could then be used to express the imms dynamic acceleration data in the respective anatomical frames of the pelvis, thorax and head. these dynamic acceleration data are already corrected for gravitational acceleration (using the xsens imms sensor fusion algorithm) and were thus used directly after rotation to the segment axis to calculate the accelerometry outcomes in matlab. there was no difference between the left and right sides for all three postural stability measures; thus, the two sides were combined for the eyes-open and -closed trials (de kegel et al. 2011). statistical analysis of postural stability outcomes descriptive statistics (median and ranges) were used to describe the postural stability measures (time, cop and accelerometry) for the case and control groups and per gender because the data were not normally distributed. to ascertain differences between cases and controls for the time, cop and accelerometry data, mann–whitney tests (for non-parametric data) were conducted, with significance level p < 0.05. ethical considerations institutional ethical approval (n13/10/140) and permission from the western cape department of education were obtained. written informed consent was obtained from the parents or guardians and the participants. the data obtained from this study were kept on a password-protected computer. consent to publish a photo image has been obtained from the participant and the parents. results and discussion in this study we explored the feasibility of testing postural stability in children with and without fasd using portable 3d biomechanical analysis instruments in a rural school-based setting. the results of the feasibility testing are provided and the proposed amendments to the testing protocol are described in response to the findings of the study. feasibility to recruit participants of the 47 children diagnosed when they were 6 years old, 43 (91.5%) were attending the same schools and received written informed consent letters. all children attended mainstream schools. thirty-one (66%) children consented to participate in the study. on the day of testing, one boy was absent and one girl and boy could not be tested within school hours and were thus excluded. therefore, 28 children, 16 boys and 12 girls, participated in the study. in total, 6 children with fas (4 boys; 2 girls), 4 with arnd (2 boys; 2 girls), 4 with pfas (2 boys; 2 girls) and 14 with no pae (8 boys; 6 girls) were assessed. we could test four boys more than what we originally planned to include in the sample. we had no difficulty in obtaining assent and consent from all participants and parents and received no questions from school principals, participants or parents on the clarity of the assent and consent forms. participants and parents understood the content of the forms and the forms were considered appropriate for use in future larger sample studies. thus, we do not foresee any pragmatic difficulties in recruiting subjects for a proposed larger study. based on the preliminary findings shown in appendix 1, we used the mean (sd) of the mediolateral (ml) velocity parameters for the group and performed a priori sample size calculation for mean difference between two independent groups. the mean (sd) for the case and control groups were 2.49 cm.s−1 (0.53) and 3.49 cm.s−1 (1.25), respectively. at least 25 participants will be required in each group (case and control groups) with effect size of 1.04 and 95% power at a 0.05 significance level (g*power 2014). this number of participants can realistically be recruited from this area if more schools are included in the sampling frame or if schools from additional rural areas are included. the demographics of the participants included in this feasibility study are presented in table 2. there was no difference between case and control groups for age, height, weight and body mass index for both boys and girls. table 2: the median (range) for age, height, weight and body mass index for the two groups per gender. measurement instruments the imms and pressure mapping device were portable, and we had no difficulty transporting it to the selected rural schools. both the imms and the pressure mat were easily set-up in spacious and confined classrooms such as computer laboratories. figure 2 shows some of the different classroom set-ups for this feasibility study. figure 2: measurement instrument set-up in different class rooms. the set-up and calibration procedure of both instruments were quick to perform within 20 min. the placement of inertial sensors on the participants was easily accomplished and the participants were not hampered by the imms or pressure mat while performing the ols tasks as the inertial sensors are unobtrusive because they are wireless and relatively compact in relation to small children. these two instruments are thus user-friendly to both participant and operator, more time-efficient and cost-effective compared with other similar 3d biomechanical measurement instruments. balance task (one-leg standing) we were satisfied with the chosen task, that is, ols with eyes open and closed. however, the visual observation via video recording of the cop displacement revealed that some participants shuffled their feet (change in direction of foot placement on the mat) for one or more of the four conditions. thus, adjustments will need to be made to the verbal instructions given for the task, that is, ‘place the foot aligned with the pressure mat (and demonstrate) and do not shift the foot from the original placement for the duration of the trial’. a picture of a left and right foot can also be added to the surface of the pressure mat to assist with feet placement in the larger follow-up study. after reviewing the cop and accelerometry data for ols with eyes open as provided in tables 3 and 4, the boys without pae took longer to achieve postural control (postural sway and mean cop velocity) and at the same time the pelvis segment displayed an increase in activity compared to boys diagnosed with fasd. this difference could possibly be explained when considering gender differences in performing the ols with eyes open. when viewing the videos of the trials, it was clear that control boys employed a different balance strategy to remain standing on one leg. they either flexed the nwb leg to 90° knee flexion and gradually lowered the foot during the task or only lifted the nwb foot partly of the ground. this balance strategy results in a slightly lower com, which may have enhanced their ability to maintain balance. it could also be a strategy to improve their ability to make corrections or adapt faster if the line of gravity (log) is moved outside of the base of support. however, this caused the nwb hip to abduct to keep the foot off the mat and thus the com and the log shifted more to the nwb side. this probably leads to a more unstable position, increasing strain on the postural stability mechanisms (vestibular, somatosensory and visual) as can be seen by the increase in pelvis segment activity (table 4). this would likely result in increased postural sway and mean cop velocity to maintain balance. however, this was only true for the boys during eyes-open trials. for the girls, there was no difference in the balance strategy employed while they performed the ols task with eyes open. although there was similar pelvis activity displayed between the two groups, the girls without pae were significantly faster to gain postural control in the anteroposterior (ap) direction. table 3a: the median (range) of the centre of pressure parameters for eyes-open trials. table 3b: the median (range) of the centre of pressure parameters for eyes-closed trials. table 4a: the median (range) of the accelerometry (acc) parameters for eyes-open trials. table 4b: the median (range) of the accelerometry (acc) parameters for eyes-closed trials. thus, for the verbal instructions and the visual demonstration by the researcher, more emphasis should be placed on the positioning of the nwb leg, that is, the knee should remain in 90° flexion and if the participant lowers the foot then the trial is unsuccessful and should be recaptured. the protocol could be further adjusted to include a practice attempt for each task prior to the formal trials. more than two formal attempts could also be allowed (e.g. three to four attempts) if the inclusion criteria for a successful trail is not adhered to; however, there should be a cut-off point for the number of formal attempts as we also consider the capability of the participants to successfully complete all four ols tasks. preliminary data on one-leg standing analysis the preliminary data revealed a significant difference between the two groups (children with fasd and controls) for the mean cop velocity and the dynamic acceleration of the pelvis segment during ols with eyes-open only. these differences were maintained when the groups were subdivided according to gender. duration of one-leg standing no trials were excluded when the time variable for both boys and girls for all four conditions were analysed. there was no difference between the left and right sides; thus, the two sides were combined for the eyes-open and -closed trials. the median and ranges for the time variable are shown in table 5. there was no significant difference between the two groups for the eyes-open trials. however, for the eyes-closed trials, there was a significant difference between case and control groups, by gender, indicating that girls in the control group could stand on one leg significantly longer than affected girls (p = 0.041). the relatively better balance control shown by control girls during the eyes-closed trials suggests that they were less dependent on visual input to maintain proper balance compared to case girls (geuze 2003). however, the gender group sizes are too small to instil confidence that true gender differences exist. table 5: the median (range) in seconds for one-leg standing for eyes-open and -closed trials. centre of pressure parameters during one-leg standing for the case group, one trial for eyes open and eyes closed (girls) were unsuccessful and was excluded (n = 2). for the control group, two eyes-open (boys) and nine eyes-closed (8 boys and 1 girl) trials were excluded. there was no difference between the left and right sides; thus, the two sides were combined for the eyes-open and -closed trials. the median and range values for the eyes-open and eyes-closed trials for the four cop parameters are shown in table 3. eyes-open trials: there was a significant difference between cases and controls for both cop mean velocity parameters (p = 0.001). the cop of the control children moved significantly faster in both directions compared to the children from the case group. there were significant differences on all four cop parameters between the case and control boy groups with p-values ranging from 0.001 to 0.016. both the maximum cop displacement and the cop mean velocity were larger for the boys from the control group compared to the case group. there was a significant difference for the apmax parameter between the case and control girl groups (p = 0.008). thus, the girls from the case group showed significantly larger anterior or posterior displacement than control girls. there was also a significant difference between the apvel parameter between the case and control girls (p = 0.049). the cop for the control girls moved significantly faster in the anterior or posterior direction than for the case girls. eyes-closed trials: there was only a significant difference between the case and control groups for mlvel (p = 0.029). the cop of the control children moved significantly faster in the medial or lateral direction than for the case children. the mean cop velocity is an index of the time-to-postural-control reflecting the amount of movement of the cop within a specified time frame (benjuya, melzer & kaplanski 2004). our study findings for children without pae (controls) compare more favourably to previous research on mlvel and less favourably for apvel as shown by zumbrunn et al. (2011) who reported a mean mlvel of 3.4 cm.s−1 ± 1.2. zumbrunn et al. (2011) and de kegel et al. (2011) reported mean apvel of 3.5 cm.s−1 ± 1.3 and 4.9 cm.s−1 ± 4.5, respectively, which were lower than the median value reported in our study (apvel = 6.4 cm.s−1; 2.7–30.8) for ols with eyes open. the mean and standard deviations for this study are reported in appendix 1 (data not shown). thus, our children with no pae (controls) have larger apvel compared to typically developed children from other countries displaying less efficient postural stability in the ap direction. the mean cop velocity for the control children was also consistently larger than that for the children with fasd in our study while the amount of maximum cop excursion remained similar between the two groups. our data for children without pae compare well with norms data for postural sway (maximum cop excursion) reported by zumbrunn et al. (2011) for typically developed children aged 8–12 during ols with eyes open (apmax = 2.3 cm ± 0.7; mlmax = 2.2 cm ± 0.6) and giagazoglou et al. (2013) also tested the postural sway of healthy children (mean age 10.6 ± 1.6) during ols with eyes open and found apmax = 3.2 cm ± 1.0 and mlmax = 1.6 cm ± 0.6. there is consistently greater postural sway in the ap direction compared to ml direction. the larger cop excursion in the ap direction for the girls with fasd indicates less efficient postural control exhibited by the girls with fasd during eyes-open trials. the increase in copmax and copvel from an eyes-open to an eyes-closed task is consistent with previous research (de kegel et al. 2011). only the study by de kegel et al. (2011) assessed typically developed children (mean age 9.6 ± 2.0) during ols with eyes closed and reported a mean apvel of 9.9 cm.s−1 ± 2.4. our study also found increased apvel in the eyes-closed condition (median 7.6 cm.s−1; 4.1–20.5) than in the eyes-open condition. during the eyes-closed trials, both groups (children with fasd and controls) implemented the same balance strategy (i.e. lifting the nwb leg off the ground in the same manner), which could be the reason why we did not find any difference in the cop or accelerometry outcome measures between the two groups. de kegel et al. (2011) assessed the reliability of various cop parameters during ols with eyes-open and -closed and found that eyes-closed trials were less reliable and should not be included in the assessment of postural control of children as a result of large within-person variability during task performance. accelerometry parameters during one-leg standing the trials excluded for the cop analysis were also excluded for the analysis of the accelerometry data. the left and right sides were combined for the eyes-open and -closed trials as there was no difference between sides. the median and range values for the eyes-open and eyes-closed trials for the six accelerometry parameters are shown in table 4. eyes-open trials: there was a significant difference between the case and control groups for both pelvic accelerometry parameters. the pelvis segment of the control children moved significantly faster in the medial or lateral (p = 0.010) and the anterior or posterior (p = 0.027) directions than the children from the case group. there were significant differences in accelerometry parameters for five segments (all except thorax mlacc) between the case and control boy groups with p-values ranging from 0.001 to 0.007. the head, thorax and pelvis segments moved faster for the boys from the control group compared to the case group. eyes-closed trials: there was no significant difference between the case and control groups in any of the accelerometry parameters during the eyes-closed trials. the 3d accelerometry parameters of the head, thorax and pelvis closely followed the pattern of the mean cop velocity in both directions. limitations the feasibility sample did not allow for subgrouping other than by gender. we excluded 25% and 42% of eyes-open and eyes-closed trials, respectively, which did not meet the criteria for a successful trial. this is similar to the study done by johnson et al. (2014) who had 25% of participants not being able to stand on one leg for 3 s but their research protocol allowed participants more attempts until a successful trial was accomplished. in our study we only allowed two attempts as this is a standard protocol to measure children’s ability to perform ols. we also allowed the children to perform ols with limited criteria (as explained under the balance task in the methods) in order to observe their balance strategies but this inadvertently compromised the use of all captured trials because it increased the number of unsuccessful trials being excluded. conclusions the study demonstrated the feasibility of (1) recruiting children with and without fasd in a rural, small town; (2) using the measurement instruments in a real-life, school-based setting and (3) performing the ols task. there was a difference in mean cop velocity (control group took longer to achieve postural control) and dynamic acceleration of the pelvis (control group displayed an increase in activity in the pelvis segment) between children with fasd compared to children without pae during ols with eyes open. this could be attributed to gender differences and the manner in which the ols task was performed as the difference was mostly found in male participants, with the task being performed differently between male participants in the case and control groups. the primary challenge for the proposed larger study is revision of how the task is performed to ensure that a larger proportion of trials are eligible for inclusion in the data analysis. availability of data and materials all data sets on which the conclusions of the manuscript rely have been presented in the manuscript and in the additional supporting files. acknowledgements the authors wish to thank (1) ms marlene de vries and ms anna susan marais from the ‘trajectory of fasd across the lifespan: new understandings in interventions’ (niaaa 2uo1aa015134-06, ethics reference number n013/01/103) project for assisting us with the data set of the children previously screened for fasd in this rural setting; (2) the participating children, parents and school principals; (3) the western cape education department for granting permission to conduct the study; and (4) the national research foundation and the fund for innovation and research in rural health for funding of the study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article authors’ contributions y.b., j.c. and q.l. were involved in the conceptualisation and design of the study and interpreted the data. y.b., j.c., s.s., w.k. and p.m. were responsible for the acquisition of data. y.b. and j.c. analysed the data and drafted the manuscript. s.s., p.m. and q.l. revised the draft manuscript and critically appraised the intellectual content. references adnams, c., kodituwakku, p.w., hay, a., molteno, c.d., viljoen, d. & may, 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computerized dynamic posturography: a measure of balance’, gait & posture 33, 594–599. https://doi.org/10.1016/j.gaitpost.2011.01.015 zhou, h., stone, t., hu, h. & harris, n., 2008, ‘use of multiple wearable inertial sensors in upper limb motion tracking’, medical engineering & physics 30, 123–133. https://doi.org/10.1016/j.medengphy.2006.11.010 zumbrunn, t., macwilliams, b.a. & johnson, b.a., 2011, ‘evaluation of a single leg stance test in children’, gait & posture 34, 174–177. https://doi.org/10.1016/j.gaitpost.2011.04.005 appendix 1: the mean (sd) of the cop parameters for eyes open and closed trials. table 1a-a1: the mean (sd) of the centre of pressure parameters for eyes-open trials. table 1b-a1: the mean (sd) of the centre of pressure parameters for eyes-closed trials. abstract introduction theoretical framework primary caregivers of children with cerebral palsy methods results discussion study limitations and future research direction conclusion and policy implications acknowledgements references appendix 1 about the author(s) joana d.a. kyeremateng centre for disability and rehabilitation studies, kwame nkrumah university of science and technology, kumasi, ghana anthony edusei centre for disability and rehabilitation studies, kwame nkrumah university of science and technology, kumasi, ghana joslin a. dogbe centre for disability and rehabilitation studies, kwame nkrumah university of science and technology, kumasi, ghana department of child health, kwame nkrumah university of science and technology, komfo anokye teaching hospital, kumasi, ghana maxwell p. opoku faculty of education, university of tasmania, hobart, australia william nketsia school of education, western sydney university, sydney, australia charles hammond department of child health, kwame nkrumah university of science and technology, komfo anokye teaching hospital, kumasi, ghana sally a. afriyie faculty of education, university of tasmania, hobart, australia citation kyeremateng, j.d.a., edusei, a., dogbe, j.a., opoku, m.p., nketsia, w., hammond, c. et al., 2019, ‘experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in ghana’, african journal of disability 8(0), a577. https://doi.org/10.4102/ajod.v8i0.577 original research experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in ghana joana d.a. kyeremateng, anthony edusei, joslin a. dogbe, maxwell p. opoku, william nketsia, charles hammond, sally a. afriyie received: 26 sept. 2018; accepted: 21 june 2019; published: 25 sept. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: cerebral palsy (cp) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. the diagnosis of cp can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. although there are negative attitudes in ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences. objectives: the main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of cp in the setting of a tertiary hospital. method: using social capital theory as framework, 40 primary caregivers of children with cp, who were receiving treatment at a major referral hospital in ghana, were interviewed about their experiences before, during and after diagnosis. results: the results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. particularly, participants discussed their inability to access essential services such as education for their children with cp. conclusion: in light of systemic challenges faced by participants and their children with cp, the need for health policymakers to prioritise the public education about cp, promoting the well-being of caregivers and other implications of the study have been discussed. keywords: cerebral palsy; caregiving; parents; culture; ghana; children. introduction cerebral palsy (cp) is a non-progressive disorder of posture or movement caused by a lesion of the developing brain (bulekbayeva et al. 2017; oskoui et al. 2013). the gradual increase in the number of children diagnosed with cp has rekindled discussions on their welfare in societies (sellier et al. 2015). for example, it was estimated the global prevalence of cp is two to three children per every 1000 births (braun et al. 2015, 2016; oskoui et al. 2013). in the ghanaian context, although there are no official statistics on number of children with cp, cerebral palsy africa (cpa) estimates that one child per 300 births has cp in ghana. while the prevalence of cp in developed countries seemed to be declining (braun et al. 2016; sellier et al. 2015), in low-income countries the prevalence of the disorder remains high (dan & paneth 2017). unfortunately, in low-income countries empirical evidence on the experiences of primary caregivers remains low (dan & paneth 2017). in societies such as ghana, where current systems of care for children with disabilities are unavailable (e.g., dogbe et al. 2019), primary caregivers are expected to raise their children and be part of the life of their children with cp. if parents are not healthy and received informal support from family members, they may be unable to provide for themselves, their child and the rest of their family with the best possible care. while there is no cure available for cp, if appropriate healthcare is available, children affected by cp without significant co-morbidities may have normal-to-near-normal life expectancies. in this study, we explored the perspectives of primary caregivers raising their children with cp in ghana. cerebral palsy is a developmental disability that could impact on the life of growing children. the main feature of cp is impaired motor function that has impact on mobility of children (braun et al. 2016; sellier et al. 2015). in addition, some children with cp may have co-morbid conditions such as living with intellectual disability (christensen et al. 2013). this could adversely impact on their daily living experiences and limitations with self-care functions such as feeding, dressing, bathing and mobility (galpin et al. 2018; rajan & john 2017). these limitations can result in the need for long-term care, far exceeding the usual needs of typical developing children. this means that primary caregivers of children with cp acquire the informal work of caregiving, with indefinite ending. in effect, cp does not only affect the children alone but rather may impact on their primary caregivers too (majnemer et al. 2012). therefore, there is the need for systems to be concerned about the well-being of not only the child with cp but also primary caregivers who are expected to provide children with ‘unending’ support services. in ghana, there is traditional interpretation given to people with disability that impacts their participation in societies. disability is perceived as stigmatising condition, and giving birth to children with disabilities is linked to the work of supernatural forces (agyei-okyere et al. 2019; kassah, kassah & agbota 2018; opoku et al. 2017a, 2019). for instance, the birth of children with disabilities is interpreted as punishment from gods, for sins committed by a member of family (opoku et al. 2017b). in some cases, people with disabilities are hidden by family members from the wider community, and in extreme cases, children with disabilities are killed to avoid the shame it brings to the family (baffoe 2013). in addition, disability is also seen as a result of witchcraft, sorcery and ‘juju’ (magical powers) (baffoe 2013; naami 2014). for example, some ghanaians believe that children with epilepsy are filled with demons that sometimes torment and throw them on the ground, when they so wish. also, children with down syndrome and cp in ghana are believed to be children given by the river gods, called ‘nsuoba’, meaning ‘water children’ (baffoe 2013; opoku et al. 2015). these beliefs impact on the lives of children with disabilities and their families who are constantly being labelled and stigmatised in societies (kassah, kassah & agbota 2014; naami 2015; opoku et al. 2017a). in a society where disability is understood from cultural interpretation (opoku et al. 2017b), it is necessary to develop an in-depth understanding of the caregiving experiences of primary caregivers of children with cp across the trajectory of diagnoses in ghana to inform policy directions. theoretical framework because of the importance of relationships between people to development, we have situated this study in social capital theory (sct). this theory has been applied in several social science disciplines to study the relationship between people and agencies in societies (aldrich & meyer 2015; ferfojja, diaz & ullman 2018). in this study, we have applied the theory as it pertains to youth studies and community development to interpret the results of the study. social capital theory refers to individuals’ position within a society that impacts on their lives (ferfojja et al. 2018). this covers the services available to people as a result of networks or acquaintance with people in the society. both formal and informal networks impact on the lives of individuals in the society. an informal network relates to the bridge between people and close units such as family and members of the community (aldrich & meyer 2015; sime & fox 2015). here, the attitudes and perception towards an individual impacts on their ability to access social capital such as education and resources for development. a formal network refers to the bond between people and structures in the society such as education, jobs and other essential services (aldrich & meyer 2015). in this study, the researchers are interested in the relationship between caregivers of children with cp and networks in society, both informal and formal. the informal network refers to the experience of caregivers in terms of their relationship with other people in the society. the formal network is linked to the experience of caregivers in accessing essential services for their children. primary caregivers of children with cerebral palsy children with cp have been reported to require a high level of physical care and emotional support from primary caregivers. this suggests that primary caregivers may be in need of education, training and being exposed to support services available to enhance the well-being of children with cp. however, it seems parents with children with cp in low-income countries such as ghana have limited information about rehabilitation, training and feeding of their children (polack et al. 2018; zuurmond et al. 2019). indeed, a study by olawale, deih and yaadar (2013) found that primary caregivers indicated that they required adequate knowledge of cp to help them cope well with the demands of taking care of the children with cp. as a result of limited information on support services for children with cp, caregivers tend to rely on informal support from relatives and close friends in society (zuurmond et al. 2018). however, in the midst of negativity towards children with disabilities and caregivers, such assistance maybe unreliable. this necessitates the need for more information on experiences of primary caregivers to rely on evidence to impact policies. elsewhere, studies have reported the experiences of primary caregivers of children with cp. it is apparent that in many advanced societies, primary caregivers of children with cp are much involved in raising their children and develop in-depth understanding about their children’s diagnosis and needs (whittingham et al. 2013). because of their level of awareness, they may be able to advocate for their children and support their inclusion in societies. also, primary caregivers are happy when appreciated for their extra roles of assisting their children or when their children with cp are accepted and lived independently (wiart et al. 2010). in the effort towards creating an inclusive society, caregivers are satisfied when their children with cp are recognised as equal members of society. despite the involvement and positive experience of some caregivers raising their children with cp, extant literature has reported barriers they faced in raising their children with cp (garip et al. 2017; khayatzadeh et al. 2013; kuo & geraci 2012; tseng et al. 2016). for example, primary caregivers of children with cp had lower incomes (whittingham et al. 2011), lower quality of life (khayatzadeh et al. 2013; terra et al. 2011) and poorer health outcome (garip et al. 2017) than that of the general population. in addition, it has been reported that primary caregivers were predisposed to psychological stress and at risk of psychiatric disorders (majnemer et al. 2012; whittingham et al. 2013). the stress levels have been reported to be related to the levels of support needed by the children and severity of their disability (garip et al. 2017); tseng et al. 2016). however, it seems little has been done in terms of documenting the experiences of primary caregivers across the diagnosis trajectory. given the need to create an inclusive society and develop social capital of all persons, coupled with lack of social support services and paucity of contemporary literature to engage policymakers in ghana, the authors sought to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of cp in the setting of a tertiary hospital. the outcomes of this study will have policy implications with regard to improving the well-being of primary caregivers and children with cp. methods participants participants for this study were primary caregivers of children with cp who were purposively recruited from the out-patient department of child health at the korle bu teaching hospital during the neurological clinic consultations on mondays. the hospital is the largest tertiary health facility in ghana that provides specialist care to children with cp. participants were included based on the following criteria: (1) she or he is the primary caregiver of a child with cp between the ages of 1 and 15 years; (2) his or her child has been formally assessed by a multidisciplinary team and confirmed to have cp and (3) she or he is capable and willing to give consent to take part in this study. table 1 summarises the characteristics of participants who took part in this study. overall, 40 primary caregivers took part in the study. of these participants, 87% were female and 13% were male. the age range of participants was between 22 and 57 years and the majority of participants (60%; n = 24) were between 30 and 40 years of age. the majority, 40% (n = 16), of the participants had attained a junior high school education qualification. a total of 30 (75%) of the 40 participants were married at the time of the interview and 50% (n = 20) of participants were self-employed such as traders. table 1: distribution of demographic characteristics of participants. instrument descriptive design was adopted for this study to understand the experiences of primary caregivers of children with cp before, during and after diagnoses. the researchers’ primary goal is to report the subjective views of a population and discuss its implication to policy for policy and practices (babbie 2011). the primary caregivers of children with cp are aware of their daily life experiences and as such are able to give insight into their world. to listen to primary caregivers, we developed a semi-structured interview guide, based on study objectives and review of literature. the interview guide covered the three broad objectives of the current study within the diagnostic trajectory: the experiences of primary caregivers of children with cp before, during and after diagnosis (see appendix 1). procedure the study and its protocols were approved by the university, hospital and the head of department of child health. clinical records of prospective participants were reviewed to ascertain proof of diagnosis and selection. the nurses’ pulled-out contacts of primary caregivers were obtained from the clinic database. they contacted them on behalf of the researchers. information about those who agreed to participate in this study were given to the research team. sixty-three primary caregivers met the inclusion criteria and were recruited. however, after consenting to participate, 23 primary caregivers either rescinded or did not show up on the agreed dates of interviews. forty participants were recruited for this study. the first author conducted the interviews from november 2013 to april 2014. on the days of the interviews, after participants and their children were treated by health professionals, they were ushered into an office where the interviews were conducted. before the interviews, nurses at the facility counselled participants. during the counselling, they were informed of the nature of the study, some of the questions to expect and the relevance of the study. they were informed that sharing their experience could impact on their psychological well-being. however, they were told that participating in this study and discussing their experiences are a way of sharing vital information for national development. at this stage, participants were left in the room with the first author. each participant signed a written consent form before they were interviewed. the study objectives were discussed with potential participants, and possible risks and benefits of the study were shared with each of them. participants were told that they had every right to withdraw from the study without any negative consequences. they were assured that their identity will be kept confidential throughout reporting of the study as no identifying information will be published. almost all the interviews were conducted in twi, which is the language spoken by many people in ghana. the interviews lasted between 30 min and 1 h, and were recorded with a voice recorder. data analysis the interviews were transcribed verbatim by the first author who is proficient in the native language (twi) and english. while playing the audio, she translated and entered the responses of participants in english to a microsoft word document. after she transcribed the first five interviews, the third and sixth authors, who are also proficient in both languages, translated and transcribed the same interviews. the three authors compared their transcriptions and realised that they had 85% agreement; however, they reached agreement on some areas they disagreed. afterwards, the first author continued to transcribe the remaining 35 interviews. four of the authors met to discuss the transcribed data. the first author briefed the remaining authors about trends that emerged in the transcriptions. these were issues categorised under the three components of the interview guide (experiences before, during and after diagnosis). subsequently, phone calls were placed to all participants by authors 1 and 4 to discuss key themes that emerged in the interviews, and to confirm if their views had been captured appropriately and to gain consent to use data in this study. all the participants gave the research team permission to use their data to write this article. we performed thematic analysis following steps outlined by braun and clarke (2014). the steps followed were reading, coding and developing framework, categorisation and mapping, tabulation under themes, extraction of data and writing of draft results. it is important to point out here that the components of the research questions were used as a priori codes. in analysing the data, firstly, the data were read by the research team individually to familiarise themselves with the content. at this stage, a meeting was held to discuss phrases to use as codes. following this, all the authors coded the data and developed separate coding frameworks. the authors met to discuss the coding frameworks and ascertain if they all assigned the same descriptors to interviews. the authors compared the coding framework, solicited suggestions and reached consensus on a common coding framework. the similarities and differences between coders were mapped and categorised under sub-themes. the sub-themes were then tabulated under the a priori themes (experiences before, during and after diagnosis). the sub-themes and associated codes were transferred onto a new microsoft word document and texts associated with them were extracted to the document. the third author wrote the story line and the first draft of results was shared among the authors. all the authors made suggestions that were incorporated in the results reported in this study. ethical considerations the study and its protocols were approved by the committee on human research, publications and ethics (chrpe/ap/304/13), school of medical sciences, kwame nkrumah university of science and technology, ghana. results participants reported barriers they encountered at each stage of the diagnostic process. the experiences of participants are presented under three sub-themes, namely primary caregivers of children with cp’s experiences before, during and after diagnosis. experiences before diagnosis results presented under this sub-theme reflect complications and factors that according to primary caregivers contributed to giving birth to a child with cp. other remaining parts of this section highlight perception and superstitious beliefs participants have heard about children with cp. of the 40 participants, eight indicated that they experienced complications during the birth process. two of them had induced labour and were allegedly inadequately managed. one participant allegedly experienced a cord complication but was made to deliver vaginally which also resulted in birth asphyxia (lack of oxygen for infants). another participant, who is a health worker, asked to be sedated to ease the labour pains. she became weak because of the sedation and in the process was unable to deliver the baby spontaneously. eventually, she was assisted by colleagues to deliver vaginally, but the baby sustained a brain injury. the last three participants reported their children convulsed later after birth before their first birthday (table 2). table 2: summary of thematic analysis. sixteen (40%) primary caregivers reported their infants had jaundice at birth. the following are vivid experiences of two of the participants: ‘when i gave birth to him, after three days he become yellow and we sent him to the hospital and they told us to expose him to the sun, but still he become more yellow and we sent him back. he was admitted and put in an incubator.’ (mother a, female, 32 years old) ‘her mother was a student when she got pregnant with baby p, when she gave birth to her, she became very sick after 5 days. the doctor said it was jaundice, so they took her blood and replaced it with another and since then we have always been coming to the hospital… we virtually live in the hospital.’ (grandmother a1, female, 58 years old) out of the 40 participants, eight also reported their babies did not cry at birth and two recounted as follows: ‘at birth, she didn’t cry. the nurses took her away for about three (3) hours and later told me she had to be kept in the incubator. upon my enquiry, the nurses told me she didn’t have the energy to breathe. i could only pray for her survival then. i heard her first cry when she was a week old, but it didn’t sound like the way other babies cry.’ (mother u, female, 41 years old) ‘baby j, was very adorable at birth. she didn’t cry, the nurse pinched her feet several times to stimulate her to cry but it didn’t happen. eventually, she made some sounds as if she was in pain. i wasn’t sure what was wrong. during weighing, i complained to the nurse, but she asked me to give her some time as the children can be a bit different sometimes.’ (mother c, female, 25 years old) experiences during diagnosis this section presents support participants received from health professionals and its effect on their children with cp. it also covers the traditional consequences and initial reaction from family members when their children were diagnosed with cp. encounter with health professionals of 40 participants, 32 said they visited the hospital to understand their children’s condition. this action marked the beginning of a long and difficult journey for primary caregivers as they begun to interact with multiple professionals to obtain a clinical diagnosis for their child’s condition. primary caregivers felt strongly that health professionals initially did not take their concerns seriously which later complicated their children’s situation. ‘at four months i realised my child wasn’t sitting, i was very worried as his siblings at that age would be sitting with some support and playing on their own. i knew there was something wrong but when i complained at the hospital, all they told me was that it was normal for some children.’ (mother r, female, 28 years old) ‘i had my first child with this kind of condition. i have been visiting the neuro clinic. … unfortunately, the second child came with the same condition and nobody is willing to tell me the cause of this condition. … when i ask the doctors, none can tell me what the actual cause is. it is very a difficult situation for me because i thought this is where i could get the answers to my questions.’ (mother g, female, 34 years old) superstitious beliefs superstitious beliefs are common attributes in the african culture. of the 40 participants interviewed, 20 commented they had experienced some of these superstitious attributes that existed within their culture. five participants reported they had been accused of bringing forth ‘spirit children’, some referred to the children as ‘nsuoba’ (river child), whereas others were blamed for bringing taboos to the families of their husbands. participants recounted that they were pressured to kill their children with cp so as to avert future calamities. some participants commented as follows: ‘my father called me and informed me that there was some kind of ritual that had to be done for me. after some time, my father called me again, this time with my husband and insisted that the ritual should be done and that it was a taboo to keep such a child in the family; the ritual was long overdue….my husband helped me pack my belongings and sneaked me to the station to pick a bus to accra with our two children.’ (mother i, female, 30 years old) ‘six months after giving birth, i realised he was not sitting . … my mother in-law also realised this. it was after this event that her attitude towards me changed …. she distanced herself and informed other family members about the condition .… she advised that we consulted the elders of the town to ‘escort the child’ and that it was best we returned him to where he came from .… i advised myself when i could not bear the pressure anymore to relocate.’ (mother f, female, 33 years old) one participant recounted how she was thrown out of her husband’s family house after realising her child could not sit at 6 months, could not keep his head straight after 8 months and kept drooling at age 1 (mother e, 25 years old). another mother reported that her husband left their house after their child was born because of pressure from his family (mother h, female, 32 years old). experiences after diagnosis this section presents results of experiences encountered by participants after their children were diagnosed with cp. the section explains the experience of participants raising children with cp, relationship between participants and people in the society, effect of child with cp on their lives and accessibility of essential services such as education and healthcare to children with cp. experience raising children with cerebral palsy almost all participants (n = 36) in the present study confirmed that they were affected by their children’s diagnosis of cp and they sometimes grieved as if their children did not exist. they expressed varying emotions, namely initial shock and denial; anger and resentment; depression; and eventual acceptance. initial shock and denial were expressed in the following ways: ‘i accepted it with much ease than my husband did. i think it was because i had more frequent contact with baby k on a daily basis than he did. he almost pretended as if it wasn’t happening. … he thought baby k would grow out of it or that something would change.’ (mother e, female, 25 years old) ‘i woke up every day hoping to see a change … that she, a child with cerebral palsy would get on her feet again and play with her siblings as she used to. i had a strong believe it was something temporal; she was probably just feeling very weak, making her unable to walk until the doctor advised us to get her a wheelchair and start physiotherapy.’ (mother m, female, 31 years old) a few participants also expressed anger and discussed the difficulties they encountered in caring for their children with cp. for example: ‘i don’t know whether to call it anger, these are innocent children. it is difficult to explain. … i just get so frustrated and bitter sometimes. i have to halt my life and take care of him from dawn to dusk. if only his dad would show a little concern; his understanding of caring for a child is just his upkeep monies, that’s all.’ (mother n, female, 34 years old) of the 40 participants, 26 reported feeling depressed. this was in the form of, combination of guilt, sorrow and tearfulness. for example: ‘my eyes are always filled with tears when i remember that day. i somehow believe i’m being punished for my sins. to think of the fact that if i had not taken that injection and went through the normal labour pains, this might not have happened.’ (mother q, female, 37 years old) ‘sister (referring to the interviewer), i am a christian, but now i doubt my faith; i doubt if there is any god. one child with this condition is already a headache, i have two! what did i do wrong to merit this? i don’t believe in any god because he is not there to see my plight. i walk around always questioning myself, what i did wrong. now, i’m scared to even think of having any more kids.’ (mother g, female, 34 years old) fifteen out of the 40 participants reported that they were able to attain some level of acceptance once they adjusted their expectations regarding their children’s capabilities and what the future held for them. participants reported that their concerns and anxiety lessened once the children were diagnosed and were in a position to seek appropriate treatment and educational programmes suitable to their children’s unique needs. participants’ sense of relief was reflected in the following statements: ‘after the doctors confirmed that a part of the brain had been damaged resulting in her loss of speech and movement, i took it upon myself to research about the condition and ask parents with children of similar condition. … now, i know, this is the turn my life has taken, i am willing to help her go through life with the help of god.’ (mother m, 31 years old) ‘with “d”, my wife and i got some sense of relief when the professionals finally explained the repercussion of the condition. i am able to help with “d” in the house since i’m on retirement. my wife’s hands are already full with the two other children.’ (father b1, male, 27 years old) neglect in families and communities throughout the accounts of the 40 primary caregivers interviewed, 16, mostly mothers, indicated that they were fully responsible for taking care of their children. while fathers indicated their willingness to support the care of their children, mothers said that they felt neglected by their spouses and other family members. one mother reported that though she was staying with the husband and still married, the husband showed very little concern in the condition of their child. another mother reported that the husband felt too embarrassed to show their child in public and had ordered her not to send the child out into the public. ‘my husband’s family do not visit anymore, i’m not invited to family gatherings anymore because they do not accept “k” as one of their own and if i could give birth to such a child, then i’m not worth joining the family.’ (mother h, female, 32 years) all participants reported that having a child with cp had affected their social life in one way or an other. a mother shared her ordeal with her child when she stepped out. she reported that: ‘going out with “p” is a whole mission now … the community in which we live shun children with such condition. the moment you step out with him and his clumsy movements, all eyes turn to look at you. we cannot attend functions anymore at church, it is quieter and easier caring for him at home than to experience the ‘rolling eyes’ when we go out.’ (mother x, female, 32 years old) ‘the ghanaian society and for that matter africans as we are, we depend on each other, but now i cannot honour invitations to funerals and other important events in people’s lives after having my child. it got to a time, i realised i was no longer getting the invitations. … the sad part is no one will actually check on you to know why and sympathize with whatever condition you may be going through.’ (mother s, female, 41 years old) experience of hardship when asked how caring for their children affected them financially, all participants complained that it had a huge toll on them. while mothers were concerned about their inability to work, fathers were concerned about high cost of medicines and related equipment. specifically, 18 mothers reported they had to stop working or quit their jobs to take care of their children with cp. they felt that they were unable to go out to work as their children required constant care and they felt they were unable to leave the child with anyone else while they went out to work. two mothers recounted their ordeal as follows: ‘i have to take him everywhere i go. it is very difficult to get someone to help look after him, they complain that he cannot express himself and that makes it very difficult for them to understand when he wants to go to toilet or when he is hungry or unhappy about something.’ (mother t, female, 38 years old) ‘i just had to quit my job to look after baby “j”. my mother who was helping me after his delivery was beginning to get tired of taking care of him. … it was at that point that i realized i had to make a decision to quit my job to take care of him.’ (mother c, female, 25 years old) all the men who took part in this study expressed difficulty in procuring the prescribed medication and equipment for their children that would help to improve their functioning. they complained about the cost of medication for their children that were not covered by the national health insurance scheme and they had to purchase it themselves. this according to them is a drain on their finances. ‘there are about three medicines the doctors always prescribe for him, but none is covered by the health insurance. i have to buy these medicines every month. the hospitals do not also provide assistive devices to help them move … i will have to go and get it myself, but i cannot afford it. as i talk to you, i had to go to the roadside to find a taxi to come and pick him from the house to the hospital.’ (father b2, male, 41 years old) ‘i must admit it is a very difficult situation the family finds itself, especially when it comes to finances. being the father, this major task is on me as the mother is unable to work because she has to take care of our sweet daughter. … this expense is aside the medications she has to take. … i have spent all my savings on our daughter’s care, i have sold my car and now taking public transport just to be able to afford the care for her.’ (father b3, male, 52 years old) generally, participants with children above 5 years, who could not walk, complained about the non-availability and cost of equipment, especially wheelchairs for their children. some primary caregivers with toddlers also mentioned the non-availability and cost of standing frames for their children as major challenges. inaccessibility of hospital the inaccessibility of specialist clinics was of unanimous concern among all primary caregivers as some had to travel from other regions to access healthcare in the greater accra region where this tertiary care is available. only three primary caregivers lived in close proximity (about 2 km) to the study site. interestingly, while those who lived close complained about frustrations they go through at the hospital, those who lived outside the city were concerned about transportation to the facility. three mothers who participated in the study said they felt that the hospital was inaccessible. one mother who lived 190 km away reported as follows: ‘the district general hospitals do not have this kind of clinic, so we have no option than to travel the distance to access it and it becomes costlier when we have to charter a vehicle because most public vehicles will not let you board their vehicle when you have a child with such condition.’ (mother b, female, 34 years old) another mother who lived about 12 km from the main tarred road where public transport could be accessed said that ‘i have to pay people to carry him to the roadside before we can get a car to the hospital. i repeat the same when we return from the hospital’. another mother shared the frustrations she goes through when they finally get to the hospital: ‘this is the only hospital in the capital that runs a neurodevelopment clinic. after hustling with transportation to get to the hospital, we have to queue and get numbers to stay in the queue waiting to see the doctor who comes at 2pm in the afternoon. meanwhile, we have to get here early in the morning to get a good position in the queue in order to see the doctor early.’ (mother v, female, 35 years old) inaccessible education services almost all participants discussed the difficulties encountered as they searched for suitable day care and educational facilities for their children with cp. twenty-four (60%) primary caregivers were still searching for educational facilities that could admit their children. many reported that mainstream schools were unable to meet the special educational needs of their children as they were constantly denied admission. for example, two mothers reported that they had been to mainstream schools and turned away because they did not have facilities and personnel to take care of such children. interestingly, special schools were unable to admit their children because they did not have the capacity to support their children. some primary caregivers shared their experiences as follows: ‘when “p” finally started walking, my greatest joy was that he could finally attend school just as his peers, but that dream was far-fetched as i was turned away by many public schools. they told me they did not have the personnel to take care of him. one principal told me ‘such children disturb the class when the children are learning.’ (mother x, female, 32 years old) ‘someone told me to try the special schools, i was very hopeful that at least, mingling with his kind was better than none but again i was turned away by two special schools. they complained they were not in the position to give such intensive care for children with cerebral palsy and if only i could get him a personal assistant, then they could consider admitting him.’ (mother w, female, 37 years old) discussion in this study, the experiences of caregivers raising children with cp were explored using sct as framework. it thus seeks to increase the knowledge base about what it means to have and live with a child with cp in the ghanaian context. at each stage of the diagnostic trajectory, it was found that there were barriers encountered by caregivers. for instance, the results show that during diagnosis some primary caregivers were being pressured to exterminate their children with cp. this was made known through constant pressure by in-laws or parents of primary caregivers to neutralise these children. this finding is partly consistent with other studies conducted in ghana that reported rejection of children with disabilities and primary caregivers in societies (kassah et al. 2014, 2018; naami 2015; opoku et al. 2017a, 2017b). this means that having a child with cp affects the relationship between individuals and people within the society. this could adversely impact on socialisation of caregivers and their children with cp. it is apparent that informal network may not support caregivers to nurture the potential of their children. in particular, the decision of primary caregivers to keep their children meant that they had disrespected their elders and that is considered to be a major offence in ghanaian societies, although this was not revealed in this study. it seems society is yet to accept children with cp as equal members of the society, but until then primary caregivers and their children may need to be marginalised and excluded from building bridges with people in the society. the relationship between individuals and other groups in the society impacts on development (ferfolja, diaz & ullman 2018). the ability of individuals to obtain useful information and assistance could enhance their development. however, in this study many participants were unhappy about services provided to them by health professionals. notably, almost all participants indicated that they visited health facilities to understand their children’s condition, but they were dissatisfied with the explanation given to them by health professionals. this finding partially corroborates previous studies that found that primary caregivers of children with cp were unable to access health services, lacked information and were dissatisfied with the support they received from health professionals (olawale et al. 2013; polack et al. 2018; zuurmond et al. 2019). it is likely that the health professionals did not have the necessary resources and skills to provide effective care and counselling to the children with cp and their caregivers. many studies have reported on limited infrastructure at health facilities to promote the needs of individuals with disabilities in ghana (see badu, agyei-baffour & opoku 2016b; badu, opoku & appiah 2016a; senayah et al. 2019). apparently, the health professionals were helpless to provide participants with useful information to avoid having and caring for children with cp. it is possible that children with cp will be denied effective participation in social services in societies because information about their upbringing was unavailable to their caregivers. the position of individuals in society could affect accessibility of services (ferfolja et al. 2018). in this study, many primary caregivers recounted that they experienced financial difficulties after their children were diagnosed with cp. participants discussed that they had to cover the cost of medical and transportation expenses which put strain on their finances. this finding corroborates the results of previous studies that found that primary caregivers of children with cp suffered acute financial difficulties that affected their psychological well-being (dogbe et al. 2019; khayatzadeh et al. 2013; whittingham et al. 2011). this finding is unsurprising because there are limited social support systems available to parents and their children with disabilities (opoku et al. 2019). compounding this situation is negative attitudes people in society have towards people with disabilities in their families. it is apparent that participants had to shoulder all the burden of caregiving and provide for their children with cp. it is possible participants may have other responsibilities such as raising typically developing peers that might interfere with their ability to support children with cp. in an era where much advocacy is focused on achieving an inclusive society, participants may not be able to support their children with cp to participate in basic services in the society. this could affect their self-worth and capacity to live independently. the interaction between individuals and essential services is instrumental in developing social capital (ferfolja et al. 2018). this includes barrier-free access to education, which has been found to be an important agency in societies. in this regard, many participants recounted their experiences about accessibility of schools to children with cp. this frustrating narrative resonated loudly through the discussion with the participants who shared that neither regular nor special schools were prepared to admit their children. in ghana, apart from the hospitals, the only established places where there are specialist services are special schools (kassah et al. 2018). it is believed that both regular and special schools have specialised staff who could render services in terms of behaviour management and socialisation (kassah et al. 2018). however, this study found the contrary. these facilities were discussed by participants as poorly resourced and lacking appropriate capacities to educate children with cp. in the absence of any standardised external support, it is unsurprising that the primary caregivers had no other choice, but to keep their children at home and play the role of teachers, further perpetuating the cycle of poor education, poverty, marginalisation and exclusion. this is the never-ending trend of the cultural norms in the ghanaian society that has minimal room for disability and its outcomes (agyei-okyere et al. 2019; baffoe 2013; naami 2014; opoku et al. 2018). it is therefore likely that participants would be over-stretched with their coping strategies, while their children grow without basic skill that will enable them to integrate and become independent adults. study limitations and future research direction it is important to state that there are a number of limitations that make it impossible to generalise this study. the study was limited in scope as participants were recruited from the main referral hospital for cp in ghana. also, the study focused on the experiences of parents with cp which might be different from parents with children with other disabilities. future research should use quantitative methods to expand this study and compare the experiences of primary caregivers of children with different types of disability to get a clear picture of parental experiences. nevertheless, this study has provided a snapshot of the experiences of parents with children with cp across their diagnosis. conclusion and policy implications social capital theory was used to underpin this study to explore the experiences of primary caregivers of children with cp before, during and after the diagnostic process. although the relationship between people in society and agencies is critical to human development (ferfolja et al. 2018), it seems participants might be unable to support children with cp. the results show that at every stage in the diagnosis of a child with cp, participants said they encountered barriers that have repercussion on caregiving experiences. for instance, it emerged that participants suffered emotional distress shortly after giving birth to children with cp. particularly, some participants were confronted with doubts and confusion in trying to understand the emerging health problems and/or developmental abnormalities in their children. also, some participants were confronted with superstitious beliefs and were persuaded to act as directed by the heads of their families and/or leaders in the communities in which they lived. in addition, many participants encountered financial problems as they were confronted with purchasing medicine and transporting their children to health facilities. similarly, primary caregivers of children with cp face further challenges as they search for suitable day care and education for their children. as it stands now, achieving an inclusive society where participants’ children with cp could develop their talents may be far-fetched looking at the experiences reported in this study. these findings seem to underscore the urgency for structures to be put in place to improve the lives of participants and their children with cp. the findings of this study have implications for policymaking in ghana. the findings seem to underscore the urgency for social and economic reforms on multi-sectorial platforms of government and non-governmental agencies. firstly, there is the need for health policymakers to intensify disability awareness campaigns and promote the well-being of primary caregivers. secondly, there is the need for the establishment of support groups by social workers in communities and hospitals for primary caregivers of children with cp. thirdly, government and private individuals should resource and promote the educational needs of children with cp in ghana that can provide daily living skills to them. similarly, there is the need for government and other stakeholders to resource hospitals to promote accessible health services to primary caregivers and their children with cp. acknowledgements the authors wish to thank the department of child health, korle bu teaching hospital, for granting them permission to conduct this study. their heartfelt gratitude goes to all mothers who took part in this study. competing interests the authors declare no conflicts of interest. authors’ contributions a.e. and j.a.d. scrutinised the study protocols and made intellectual contributions to the draft instrument used for data collection. j.d.a.k. collected and analysed the data. m.p.o., w.n., c.h. and s.a.a. conducted the literature search and review for this study. the draft manuscript was shared among all the authors to make intellectual contribution. funding the authors did not receive any financial contribution for this study. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article 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sanders, m. & boyd, r., 2011, ‘responding to the challenges of parenting a child with cerebral palsy: a focus group’, disability and rehabilitation 33, 1557–1567. https://doi.org/10.3109/09638288.2010.535090 whittingham, k., wee, d., sanders, m.r. & boyd, r., 2013, ‘sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences’, disability and rehabilitation 35(17), 1447–1452. https://doi.org/10.3109/09638288.2012.737081 wiart, l., ray, l., darrah, j. & magill-evans, j., 2010, ‘parents’ perspectives on occupational therapy and physical therapy goals for children with cerebral palsy’, disability and rehabilitation 32(3), 248–258. https://doi.org/10.3109/09638280903095890 zuurmond, m., nyante, g., baltussen, m., seeley, j., abanga, j., shakespeare, t. et al., 2019, ‘a support programme for caregivers of children with disabilities in ghana: understanding the impact on the wellbeing of caregivers’, child: care, health and development 45, 45–53. zuurmond, m., o’banion, d., gladstone, m., carsamar, s., kerac, m., baltussen, m. et al., 2018, ‘evaluating the impact of a community-based parent training programme for children with cerebral palsy in ghana’, plos one 13, 1–17. appendix 1 interview guide schedule for participants. researcher introduces self and summarises the aim of the study. could you tell me more about yourself? experiences before diagnosis how was your pregnancy experience? how was your experience during childbirth? experiences during the diagnostic process what prompted you to seek help for [child’s name]? tell me about this time in your family’s life. who first mentioned cerebral palsy? what sense did you make out of such diagnosis/what did that diagnosis mean to you? what was particularly difficult during this time? what was helpful? how did you feel during this stage? what did you do/feel like doing after you were told? what thoughts and concerns ran through your mind as you tried to understand your child’s condition? post-diagnostic experiences tell me about the general running of the household after [child’s name] was diagnosed with cerebral palsy. how is that different now? how did you manage daily tasks such as feeding, meals, bath time, using the toilet, bedtime, fun activities and so on? what difficulties did you encounter? what helped? how did you cope with all the demands on your time and energy? what or who was the most helpful in coping with the demands of raising your child with cerebral palsy? who did you turn to for help? what formal support systems and helpful organisations are available to you? what informal support networks have helped you through tough times? how did you experience the efficacy of these resources? what do you still need? how can the services available to caregivers of children with cerebral palsy be improved? what are your thoughts about [child’s name] future? what are your main concerns about him or her? what gives you hope? abstract introduction methods results discussion conclusion acknowledgements references appendix 1 about the author(s) refilwe e. morwane centre for augmentative and alternative communication, faculty of humanities, university of pretoria, pretoria, south africa shakila dada centre for augmentative and alternative communication, faculty of humanities, university of pretoria, pretoria, south africa juan bornman centre for augmentative and alternative communication, faculty of humanities, university of pretoria, pretoria, south africa citation morwane, r.e., dada, s. & bornman, j., 2021, ‘barriers to and facilitators of employment of persons with disabilities in lowand middle-income countries: a scoping review’, african journal of disability 10(0), a833. https://doi.org/10.4102/ajod.v10i0.833 review article barriers to and facilitators of employment of persons with disabilities in lowand middle-income countries: a scoping review refilwe e. morwane, shakila dada, juan bornman received: 06 dec. 2020; accepted: 28 apr. 2021; published: 22 june 2021 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: unemployment rates for persons with disabilities in lowand middle-income countries (lmics) are high. this is despite the call to action by the united nations convention on the rights of persons with disabilities and sustainable development goals aimed at improving the economic well-being of the marginalised. to improve the employment outcomes of persons with disabilities in these countries, factors that facilitate and hinder employment should be explored. objectives: this study explored barriers to and facilitators of employment for persons with disabilities in lmics through a scoping review. methods: a search strategy included a systematic search of nine databases using specific keywords. the international classification of functioning, disability and health (icf) framework was used as a conceptual framework and barriers and facilitators were reported according to the domains of the icf. articles published between 2008 and 2020 were reviewed using a predefined criteria. results: thirty-two studies were identified in the review. factors were identified in all domains of the icf: (1) body function and body structure (12; 39%); (2) activities and participation (13; 42%); (3) personal factors (23; 74%); (4) environmental factors (27; 84%). conclusion: factors that hinder and facilitate the participation of persons with disabilities in lmics were mainly found in the environment, with personal factors also influencing participation. the presence of negative attitudes and lack of services mainly in health and transport were major factors within the environment whilst personals factors included the lack of educational qualifications and skills. these results indicate the importance of consideration of contextual factors when developing intervention strategies aimed at facilitating the employment of persons with disabilities in lmics. keywords: barriers; disability; employment; facilitators; international classification of functioning disability and health (icf) framework; lowand middle-income countries (lmics); societal participation. introduction people with disabilities constitute approximately 15% of the world’s population, a rising figure compared to the 10% prevalence rate estimated in the 1970s (who [world health organization] and world bank 2011). a significant proportion of these individuals live in lowand middle-income countries (lmics) where unemployment rates for persons with disabilities can be as high as 60% – 90% (united nations flagship report 2018). indeed, both the prevalence and unemployment rate of persons with disabilities vary amongst countries and are significantly influenced by the political, social and economic status of that country (jenkins et al. 2011). the world report on disability (who and world bank 2011) describes barriers faced by persons with disabilities which result in exclusion and restrictions for participation in various live activities, such as the presence of negative attitudes, lack of delivery and provision of services, lack of accessibility, inadequate funding and lack of consultation of persons with disabilities themselves. mitra, posarac and vick (2013) gave a snapshot of the economic well-being of persons with disabilities in 15 lmics. the results of the study indicated that persons with disabilities presented with low education, low participation in the workforce and lived in abject poverty. these results are similar to previous studies that have reported a link between disability and poverty (banks, kuper & polack 2017). in most instances, the source of income emanates from social security benefits or grants. it is therefore not surprising that persons with disabilities are the most economically disadvantaged group in society, particularly those in lmics (mitra et al. 2013). employment is considered a mode of societal participation and therefore extends far beyond economic sustainability as it facilitates inclusion and participation in everyday life activities (hästbacka, nygård & nyqvist 2016). given the consequences of non-participation in the economic environment, unemployment of persons with disabilities then becomes a violation of human rights. with the world report on disability (who and world bank 2011) recommending practical solutions to the current barriers faced by persons with disabilities, some governments in lmics heeded the call to action and responded with the drafting of policies and programmes that promote the participation of persons with disabilities, particularly in areas related to education, health and employment (cobley 2013). despite these initiatives, persons with disabilities continue to be side-lined and face barriers in accessing health services, education and employment opportunities (mitra & sambamoorthi 2014). in order to propose strategies that promote and improve the employment outcomes of persons with disabilities in lmics, an understanding of factors that hinder and facilitate their employment is required. currently, evidence regarding this is based on literature from high-income countries (hics) (harmuth et al. 2018; khayatzadeh-mahani et al. 2019; vornholt et al. 2018). according to the social model of disability, disability is a result of barriers that exist in the social, economic and attitudinal environment and not because of the impairment in health conditions (oliver 1990). therefore, an individual is disabled because of barriers that exist in that specific environment which is context-bound. comparatively, barriers identified in lmics may differ from hics mainly because of the availability of resources and sustainable services (who and world bank 2011). in most lmics, the lack of availability of quality prevalence data because of inconsistent use of the definition of disability, amongst others, results in data that are incomparable internationally (schneider & nkoli 2011). therefore, data cannot be easily transferred from one context to the other. there are limited studies that have systematically reported on what hinders and facilitates the employment of persons with disabilities in lmics (ebuenyi et al. 2018; mizunoya & mitra 2013; tripney et al. 2019; visagie et al. 2017). recently, a scoping review by ebuenyi et al. (2018) reported on barriers to and facilitators of employment of persons with psychiatric disabilities specifically in the african context. poor health, social stigma, discrimination, negative attitudes from employers and lack of social support from the government were identified as the main barriers for this population in accessing employment. conversely, facilitators included personal factors such as positive self-esteem, other forms of employment such as supported and competitive employment and reasonable accommodation in the workplace. results further highlighted existing challenges in the development of legislation and the implementation of policies and guidelines that support the participation of persons with disabilities in the labour market in africa. only eight studies were included in the review (1990–2018) highlighting the paucity of research in the field of disability and employment in lmics. in the review by tripney et al. (2019) on the effectiveness of various intervention programs in facilitating participation in the labour market of adults with intellectual and physical disabilities from lmics, participants reported ill-health and poor well-being, attitudinal barriers, inaccessible working environments and the lack of education and job-related skills as employment barriers post-intervention. although the two reviews provide some understanding of the barriers to and facilitators of employment, ebuenyi et al. (2018) focused on psychiatric disabilities whilst tripney et al. (2019) reported on outcomes of employment intervention programmes. the aim of this review is, therefore, to explore the complexity of participation of persons with various disabilities in lmics by using a framework that understands the complexity of factors that hinder the employment of persons with disabilities. studies in lmics suggest that environmental factors are important considerations in understanding barriers or facilitators to employment for persons with disabilities (mizunoya, yamasaki & mitra 2016). the international classification of functioning, disability and health (icf) framework (who 2001) describes disability as occurring at three levels of functioning, that is, body function and structure (condition or disorder), activity limitations, participation and contextual factors (environmental and personal factors). disability is therefore viewed as a complex interplay between these three levels of functioning. in the icf (who 2001) disability is therefore defined as an: [u]mbrella term for impairments, activity limitations and participation restrictions that denotes the negative aspects of the interaction between a person’s health condition and their contextual factors i.e., environmental and personal factors. (p. 213) in other words, the icf does not attribute disability as a result of the impairment an individual presents with, but as an experience with the environment they function in. the icf interrelates with the ecological-system approach which is used within vocational rehabilitation to specifically identify factors that hinder or facilitate the participation of persons with disabilities in employment (erickson et al. 2014; lindsay et al. 2015). the icf’s definition of disability has been highly praised, however, its relevance to lmics critiqued, mainly because of the model’s view of the environment as disabling and not necessarily as a cause of disability (visagie et al. 2017). in lmics, there is a strong association between poverty, health and disability (banks et al. 2017; groce et al. 2011). for instance, the development of certain diseases can be because of lack of access or availability of health services (e.g. lack of access to medication, rehabilitation and assistive devices) and poor living conditions (e.g. malnutrition and poor water and sanitation) (mitra et al. 2013). therefore, diseases are a result of poverty caused by the environment. nonetheless, the icf is currently the most widely used comprehensive model of disability which is also adopted by the world report on disability (who & world bank 2011). this study follows the definition of disability as used in the icf. it should be noted that inconsistent definitions of disability were used in the studies included in the review. the paucity of research on disability and employment in lmics necessitated a scoping review. this allowed for the collation of existing literature to highlight existing gaps in research. methods the review followed the methodology for scoping reviews as outlined by tricco et al. (2018). it aimed to specifically determine existing barriers and facilitators to the employment of persons with disabilities in lmics. the review was guided by the following research question, ‘what are the barriers to and facilitators of the employment of persons with disabilities in lmics?’. search strategy a multi-faceted search strategy was utilised including a systematic search of multiple electronic databases spanning the interval from 2008 to april 2020, which included africa wide information, cinahl, econlit, education resources information center (eric), medical literature analysis and retrieval system online (medline) business source complete and psychinfo to avoid database bias (munn et al. 2018). search-terms were determined according to the suitability of each electronic database. furthermore, publications from the who, the world bank, the united nations, the international labour organisation and other organisations such as professional and organisational associations were explored. also, a search on google scholar, and a broad search on a web search engine, googletm were conducted. the search strategy included a combination of key pcc concepts including disability (population), employment (concept) and lmics (context) as indicated by the world bank country income classification system (2019–2020). appendix table 1-a1 provides information on the search strategy used in this study. following the completion of the search strategy in april of 2020, relevant studies related to the employment of persons with disabilities in lmics were included using the exclusion and inclusion criteria outlined in table 1. table 1: inclusion and exclusion criteria. data analysis a data extraction tool was developed to extract information on the scope of the article. the tool included population, type of disability, aims of the study, design, context and the outcomes of the studies. an example of how data were extracted using the tool is depicted in table 2. the data extraction was conducted by rem and sd. to determine factors that were reported as barriers and facilitators, identified studies were transferred to a computer-aided qualitative data analysis program, atlas-titm software, where the findings of the included studies were thematically analysed and coded. the identified codes were organised according to the second-level category classification of the icf using refined linking rules as outlined by cieza et al. (2019). the findings were therefore presented under the domains of the icf, that is, body function and structure, activity and participation, environmental and personal domain (table 3). to ensure accurate analysis of data, 20% of the total coded data were randomly selected and analysed by the second author, sd. disagreements in coding were resolved by the first and second authors re-coding the data together. table 2: studies reporting on barriers and facilitators of employment of persons with disabilities in lowand middle-income countries. table 3: identified factors within the international classification of functioning, disability and health framework domains. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. results an initial search was conducted in june 2019 which included studies between the years 1997 and 2019. this electronic search of the literature yielded a total of 1490 potentially relevant, peer-reviewed studies. when updating the review search strategy in april 2020, the authors made a decision to include studies dated between 2008 and 2020; this was done with the intention to only identify studies published after the ratification of the crpd (united nations 2006) by most lmics. the final search strategy yielded a total of 1337 studies. the identified studies were then exported to covidencetm, a web-based software platform that organises reviews such as systematic reviews (babineau 2014). following the exclusion of duplicates, a total of 1151 studies were independently screened by r.e.m. and s.d. at a title level. finally, following the screening at an abstract level, 64 studies were assessed for eligibility, 24 of which met the inclusion criteria. eight studies identified through hand searches and a search on googletm were added to the 24 studies which totalled to 32 included studies. where there were conflicts, the authors reviewed the articles together and came to a consensus. preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (prisma-scr) (tricco et al. 2018) were used to report on the scoping review process. further information regarding the review process is charted in figure 1. figure 1: preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews. thirty-two studies were included in the final analysis as shown in table 2. geographical distribution of the countries represented in the review as classified by the world bank classification (2019–2020) included two studies from low-income countries (6.3%), nine from lower-middle-income countries (28%) and 21 from upper-middle-income countries (66%). countries represented in the review included malaysia (n = 8), south africa (n = 6), india (n = 3), brazil (n = 3), turkey (n = 3), nigeria (n = 2), ghana (n = 2), whilst the rest of the studies were from cameroon, ethiopia, kenya, nepal and thailand. sixteen qualitative (50%), 13 quantitative (41%) and three mixed-method (9%) original studies were included. the included studies mainly focused on exploring the experiences of persons with disabilities and views of employers with regard to economic participation (31; 97%), whilst two specifically focused on vocational training (malle, pirttimaa & saloviita 2015; yusof, ali & salleh 2014) and one on integrative employment (santos rodrigues et al. 2013). although the included studies covered various types of disabilities such as sensory, intellectual, physical, learning, communication and multiple disabilities (table 2), there was a vast representation of sensory disabilities, particularly visual disabilities (8; 24%). the participants in the studies varied, 24 studies explored the experiences of persons with disabilities themselves (27; 75%), whilst seven studies explored the views of employers (22%), and three studies explored the perspectives of family members, recruitment agencies and other stakeholders (researchers and educators). although studies included both male and female participants, three studies focused specifically on women with disabilities (amin & abdullah 2017; bualar 2014; naami, hayashi & liese 2012). table 1 provides a list of studies reporting on barriers and facilitators of the employment of persons with disabilities in lmics. barriers and facilitators identified within the international classification of functioning, disability and health framework domains table 3 provides a summary of factors reported to either hinder or facilitate the employment of persons with disabilities as described in the studies included in the review. the study used the icf as a guiding framework; therefore, the identified barriers and facilitators are reported according to its domains, that is, body function and body structure, activity and participation, environment and personal domain. the vast majority of studies (32; 97%) were reported on barriers to employment, whilst only nine studies (27%) were reported on facilitators of employment. with regard to the icf, included studies reported on factors related to multiple domains of the icf (table 1), with only four studies (12%) reporting on factors within one domain. an example would be a study by saigal and narayan (2014) that reported on inaccessible environments as a barrier to employment, which solely lies within the environment domain. barriers are reported in the study as a ‘lack of’ and facilitators as ‘availability of’. it should be noted, however, that a lack of a barrier is not automatically seen as a facilitator, although the absence or lack of a facilitating factor can be a barrier. identified factors that are barriers and facilitators are, therefore, reported together. thirteen studies (39%) reported on factors within the body function and body structure domain which included the type and severity of disability (8; 62%), and health condition (5; 38%). fifteen studies (47%) were reported on factors within the activity and participation domain, including admission to schooling (8; 53%) and work and employment (7; 47%). twenty-two (69%) studies were reported on personal factors, namely educational qualifications and vocational skills (20; 91%), gender and age (11; 50%), and three studies were reported on the onset of the disability and marital status. most of the studies were reported on factors within the environment (28; 88%). the presence of attitudes was reported as a major contributing factor to the unemployment of persons with disabilities (20; 71%) whilst other factors were linked to services and systems (14; 50%), policy and legislation (10; 36%), natural and built environment (9; 32%), products and technology (7; 25%) and support and relationships (7; 25%). discussion this study aimed to explore existing literature on barriers and facilitators to the employment of persons with disabilities in lmics. the results of the review were aligned to the domains of the icf. similar to previous reviews, results indicated a paucity of research regarding the economic participation of persons with disabilities in lmics (ebuenyi et al. 2018; tripney et al. 2019). as the included studies were published post the ratification of the united nations convention on the rights of persons with disabilities (un crpd) (united nations 2008) and its optional protocols by the majority of the lmics, it was therefore assumed that most countries had initiatives in place aimed at eradicating and promoting equal rights. however, despite these efforts, the included studies further reiterate the paucity of research in lmics with regard to the employment of persons with disabilities and secondly, the poor advancement in the participation of persons with disabilities in the open labour market. furthermore, the included studies do not, unfortunately, represent half of the listed lmics, and only 12 (22%) out of 54 countries were represented in the review. the study used the icf as a guiding framework. this enabled an in-depth understanding of challenges and facilitators within the microsystem (i.e. individual-level), mesosystem (i.e. immediate environment) and the macro-system (i.e. societal level). barriers and facilitators identified were mainly reported in the environment (27; 87%) and personal (23; 74%) domain. similar to previous studies, 90% of the studies in the review mainly reported on hindering factors as opposed to facilitating factors to the employment of persons with disabilities. this could be attributed to the need to first establish and understand existing barriers to employment of persons with disabilities in lmics prior to solutions being sought (ebuenyi et al. 2018). the reported findings have some commonality to those reported in hics (hästbacka et al. 2016; khayatzadeh-mahani et al. 2019; padkapayeva et al. 2017; vornholt et al. 2018), however, as observed by mitra and sambamoorthi (2014), hics report more on activity limitation, whilst lmics mostly report on limitations imposed by the disability, therefore an individual is perceived disabled on the virtue of the presence of impairment regardless of whether or not they experience restrictions to participation in daily life situations. body function and body structure the severity and type of disability determine the likelihood of one being employed and also the willingness of employers in hiring a person with a disability (amin & abdullah 2017; bengisu & balta 2011; maja et al. 2011). in amin and abdullah’s (2017) study, employers rejected persons with physical disabilities, citing inaccessible workspaces as the reason for the rejection. similarly, in a study by maja et al. (2011), organisations interviewed and reported that the working environments in their companies were not suitable for persons with physical disabilities as a high level of movement and endurance was required. also, certain job descriptions were reported as not suitable for certain types of disabilities (ned & lorenzo 2016), for example, persons with visual and physical disabilities were limited in terms of variety of job positions (bengisu & balta 2011; lamichhane 2012). visual disabilities were represented in most studies in the review, perhaps highlighting that this population is more likely to be employed in lmics. lamichhane (2012) found an explanation of this phenomenon, wherein 43.42% of persons with visual disabilities in his study were employed within the education profession. this was as a result of advocacy movements in the 1980s that called for the inclusion of persons with disabilities in education colleges and thereby demanded that the government provide support in terms of assistive technology and adapted material. in the literature, persons with severe disabilities are reported to be disadvantaged in terms of employment opportunities available in lmics (mizunoya & mitra 2013). likewise, the studies in the review reported the lack of employment opportunities available for persons with disabilities. in a study by yazici et al. (2011), employers showed a preference in hiring individuals whose disability was less severe in nature, that is, presented with 100% hearing, vision and communication skills (yazıcı et al. 2011). in bhanushali (2016), 92% of the participants whose disability was severe in nature opted for self-employment because of the barriers experienced with securing employment. from the findings, it can be deduced that the lack of employment opportunities paints a bleak future outcome. given the lack of employment opportunities in lmics, the option of self-employment/entrepreneurship should be further explored for persons with disabilities particularly those who present with a severe disability. another hindering factor, poor health was reported to also negatively impact employment outcomes, as frequent sick-leave is required which means time away from work (bualar 2014). cramm et al. (2013) found that the unemployment of the majority of the 523 youth with disabilities was associated with poor health. equally, gudlavalleti et al. (2014) found that 18.4% of 839 persons with disabilities who participated in the study required medical services more often than those without a disability. it is known that many persons with disabilities have co-morbid or secondary conditions in addition to their disability, and therefore require greater medical attention than their counterparts without a disability (bright, wallace & kuper 2018). it should be noted that poor health in persons with disabilities in lmics is linked to a lack of access and the unavailability of rehabilitative services and medical care (lorenzo & cramm 2012; mitra et al. 2013). the findings, therefore, highlight the fact that the participation in the employment of persons with disabilities in lmics can be enhanced by ensuring access to medical and rehabilitative services as part of intervention programmes (abdel malek, rosenbaum & gorter 2020; cawood & visagie 2015). activity and participation persons with disabilities encounter barriers to participation in major life activities such as education and employment. in this review, the most frequently mentioned barrier to participation in major life areas was the lack of access to schooling (i.e. the lack of access to basic, higher education and vocational training) (bhanushali 2016; cramm et al. 2013; yazıcı et al. 2011; yusof et al. 2014). this impacts the acquisition of job-related skills that are required for one to be employed (cramm et al. 2013; lee et al. 2011). malle et al. (2015) reported that barriers experienced by persons with disabilities from participating in vocational education were because of the lack of adapted curriculum and educational material, skilled educators and trainers, as well as systemic exclusion from certain types of courses. also, yusof et al. (2014) found that persons with disabilities who had graduated from a vocational training programme were employed in positions not related to their qualifications, many of which were in low-paying positions. these results highlight the poor link between skills required in the field and skills provided in vocational training programmes. it is therefore imperative to have an alignment in the type of skills training provided and skills that are in demand in the open labour market (opini 2010). again as reported by studies in the review, employment opportunities were scarce for persons with disabilities (harun et al. 2020; khoo et al. 2013; ta & leng 2013). where opportunities were available, they were in low-paying positions that required low-level skills (amin & abdullah 2017; agyei-okyere et al. 2019; bhanushali 2016). in a study by khoo et al. (2013), participants with physical disabilities reported unequal employment opportunities, and the government prioritises employment of the skilled able-bodied population (khoo et al. 2013). notably, the focus in most studies in the review was specific to the formal sector, with work based in urban areas (potgieter et al. 2017; saigal & narayan 2014; wiggett-barnard & swartz 2012; wolffe et al. 2013a). given that most lmics rely on self-employment (mitra et al. 2013), the informal sector was scarcely mentioned (agyei-okyere et al. 2019; bhanushali 2016). for those deciding to start businesses, support in the form of funding from governments is poor (agyei-okyere et al. 2019; bhanushali 2016). agyei-okyere et al. (2019) indicated barriers that persons with disabilities faced in participating in the farming business, which were related to a lack of financial support from bank institutions and the government. similarly, studies in the literature also reiterate that vocational training programmes in lmics should focus on skills related to the development of businesses and understanding models of funding to sustain those businesses (tripney et al. 2019). integrative employment was a reported facilitator to employment for persons with severe disabilities (amin & abdullah 2017; santos rodrigues et al. 2013). according to santos rodrigues et al. (2013), customised employment provides skills training opportunities, work preparation programmes, and integrates persons with disabilities in employment by linking them to potential employers and business opportunities. in a study by amin and abdullah (2017), supported employment workshops that provided employment opportunities to women with physical disabilities were located in remote areas far from urban areas where social and economic activities occur, not to mention that work in these workshops was not only non-stimulating but was of minimal wage. similar findings are reported in the literature, where the benefits of integrative employment programmes, such as customised and supported employment programmes, are highlighted in the literature, and these programmes facilitate the integration of this population into the open labour market (tinta, steyn & vermaas 2020). the programmes are further said to provide an opportunity for the development of skills required for gainful employment whilst accommodating the needs of persons with severe disabilities (garcía-villamisar, wehman & diaz navarro 2002). environmental factors previous studies have identified barriers and facilitators to be mainly within the environment (hästbacka et al. 2016; khayatzadeh-mahani et al. 2019; lindsay 2011). in this review, factors were identified within all chapters of the environmental domain, again highlighting the influence of the environment on functioning (glässel et al. 2011). the most frequently reported factors in this review were attitudes, policies and legislation as well as services and systems. negative attitudes from employers, family and society were reported as major factors that hinder participation in employment. employers’ misconceptions held about disability influence hiring practices (bengisu et al. 2008; bualar 2014; potgieter et al. 2017). employers lack trust and believe that persons with disabilities can be as productive as other employees without disabilities (lee et al. 2011; maja et al. 2011; toldrá & santos 2013). furthermore, in a study by ta et al. (2011), employers reported a lack of knowledge in managing persons with disabilities in the workplace. persons with disabilities are often perceived by families as incapable of being educated and employed (khoo et al. 2013; naami et al. 2012). in extreme cases, persons with disabilities face abandonment from their families as a result of their disability (bualar 2014; harun et al. 2020; ta & leng 2013). in the same light, support from family is a notable facilitator (bengisu et al. 2008; opoku et al. 2017a). marsay (2014) found that 40% of the interviewed participants with disabilities who were employed reported that support from family and friends played a crucial role in their staying in their job. the lack of education services (i.e. inclusive and well-resourced schools facilitate the acquisition of skills crucial for employment) (malle et al. 2015; naami et al. 2012; ta & leng 2013), transportation (amin & abdullah 2017; bualar 2014; khoo et al. 2013) and health services (bengisu et al. 2008; coelho et al. 2013; cramm et al. 2013) hinders participation in employment. a systematic review conducted on the barriers to accessing rehabilitative services in lmics indicated that 22 of the 77 included studies were related to distance and transportation challenges, affordability of services, fear and lack of knowledge about the importance of services (bright et al. 2018). other services such as employment services (bengisu et al. 2008; cramm et al. 2013; gudlavalleti et al. 2014; wiggett-barnard & swartz 2012) and communication services (i.e. media such as radio, television and newspapers) (amin & abdullah 2017; lee et al. 2011; opoku et al. 2017a) were reported as facilitators to participation. also, the studies discussed the importance of the availability of legislation and policy that promote the participation of persons with disabilities in education and employment (amin & abdullah 2017; harun et al. 2020; lamichhane 2012). yazici et al. (2011) found that 49.9% of the employees with a disability were employed by the turkish labour institution as a result of the set government quota of 3%. unfortunately, in lmics, support from the government is limited, with the implementation of policies being poor. implementation and enforcement of anti-discriminatory law and policies that facilitate the employment of persons with disabilities are therefore imperative. personal factors facilitators to employment reported include interpersonal skills that facilitate employment such as academic (e.g. reading and writing), and job-related skills (coelho et al. 2013; harun et al. 2020; lee et al. 2011; yusof et al. 2015). similarly, the lack of education limits employment opportunities available to an individual with a disability (opoku et al. 2017a; toldrá & santos 2013). khoo et al. (2013) found that 158 out of 287 persons with a physical disability (55%) encountered barriers to securing employment because of low levels of education. important to realise, however, is the fact that the lack of access to education and the unavailability of education services and systems greatly contribute to poor levels of education (mitra et al. 2013). these findings highlight the complex interplay between an individual’s condition and factors within the environment that either hinder or facilitate participation in employment. existing systems tend to favour men rather than women with men having increased access to education and employment opportunities (amin & abdullah 2017; lamichhane 2012; toldrá & santos 2013). naami et al. (2012) highlighted the double prejudice faced by women with disabilities in ghana, firstly based on their gender and secondly on their disability. these prejudices are further complicated by issues of culture, religion, class and geographic location (bualar 2014; opoku et al. 2017a; ta et al. 2011). marital status increases the likelihood of being employed (bengisu et al. 2008; yazıcı et al. 2011). in a study by wolffe et al. (2013b), persons with visual disabilities who were married worked more hours, experienced less difficulty in accessing learning and employment opportunities and earned more than those who were unmarried. using the icf, the multitude of factors that impact women with disabilities beyond their diagnosis could be identified. persons with developmental disabilities were more likely to be found in employment than those with disabilities acquired later in life (coelho et al. 2013; wolffe et al. 2013a, 2013b). in the same light, age predicted whether one would be employed or not (coelho et al. 2013; wolffe et al. 2013a, 2013b). older persons with disabilities were found to be in employment compared to those who were younger as they were found to be still pursuing some sort of educational qualification (wolffe et al. 2013a). although the personal domain is not coded within the icf, these results reiterate the influence of personal factors on functioning and subsequent participation in employment (glässel et al. 2011). intervention programmes should take into consideration an individual’s personal factors in addition to their diagnosis and identified factors within the environment (momsen et al. 2019). limitations of the study a few limitations exist in this study. firstly, only peer-reviewed journal articles and original studies were included in the review. the authors acknowledge that the inclusion of other sources such as dissertations and disability reports could have yielded a higher number of studies and therefore, richer information. secondly, only studies published in english were included. however, english is not an official language in most lmics. future studies should thus consider the inclusion of studies in other common languages other than english. lastly, a handful of lmics were represented in the study and therefore results cannot be generalised. it is thus recommended that future studies include a wide representation of lmics. conclusion the findings of this study icf highlight the fact that persons with disabilities in lmics still face marginalisation in participating in employment. the icf proved to be a suitable tool for describing factors in lmics that hindered and facilitated participation. in the review, contextual factors (personal and environmental factors) were found to be major barriers or facilitators to employment. this information indicates the influence of individual factors in addition to external factors on functioning. the findings should be taken into consideration by researchers, clinicians and policy makers when developing strategies aimed at increasing the participation of persons with disabilities in lmics. based on the findings from the study, it is recommended that future studies explore how the identified facilitators to employment of persons with disabilities can be practically implemented in lmics. acknowledgements the financial assistance of the national institute for the humanities and social sciences (nihss/ sds17/1187) ph.d. scholarship is hereby acknowledged for making data collection and writing of this manuscript possible, and the national research foundation (nrf) (nfsg180510327750) is also acknowledged for making publication of this manuscript possible. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions r.e.m. was responsible for conducting the literature search, data extraction, analysis of data and the writing and conceptualisation of the manuscript. s.d. was responsible for reviewing the screening of articles at the abstract and full title level, data extraction, analysis and the writing and conceptualisation of the manuscript, and j.b. assisted with the writing and conceptualisation of the manuscript. all authors reviewed the final manuscript. funding information this publication was supported by funding received by rem from national 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the study. abstract introduction methodology findings discussion conclusion acknowledgements references about the author(s) m. christinah sadiki research administration and development, university of limpopo, polokwane, south africa brian watermeyer including disability in education in africa (idea) research unit, department of health and rehabilitation sciences, division of disability studies, university of cape town, cape town, south africa nina t. abrahams department of exercise, nutrition and health sciences, division of exercise science and sports medicine, university of cape town, cape town, south africa citation sadiki, m.c., watermeyer, b. & abrahams, n.t., 2021, ‘transitioning to a life with disability in rural south africa: a qualitative study’, african journal of disability 10(0), a697. https://doi.org/10.4102/ajod.v10i0.697 original research transitioning to a life with disability in rural south africa: a qualitative study m. christinah sadiki, brian watermeyer, nina t. abrahams received: 02 dec. 2020; accepted: 28 apr. 2021; published: 22 july 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: adjustment to the onset of disability has complex reverberations relating to both socially engendered disadvantage and the realities of functional limitation. pre-existing ways of understanding disability can meaningfully shape this experience. objective: this study aimed to provide an exploratory understanding of the experience of becoming disabled in a low-income, under-served, rural south african community. in particular, it was interested in how people with disabilities constructed their struggle within the conceptual split between disadvantage caused by ‘malfunctioning’ bodies (a ‘medical model’ view) and that caused by social organisation (a ‘social model’ view). methods: seven people between the ages of 39 and 47 who had acquired a physical disability within the last 4 years were recruited in a rural area of limpopo province, south africa. semi-structured face-to-face interviews were conducted, and the resulting data were thematically analysed. the authors were positioned as both ‘insiders’ and ‘outsiders’ to the participants and sought to use this orientation to best understand and stay faithful to participants’ views while simultaneously applying participant’s experiences to conceptual knowledge in disability studies. results: four themes emerged: (1) emotional impact of onset of disability, (2) being introduced to disablist prejudice, (3) being required to take on a ‘disabled’ identity and (4) socio-economic implications of becoming disabled. the findings reflected a complex set of adverse experiences in the lives of the participants, spanning disadvantages based on embodied, cultural, relational and environmental factors, which were superimposed on existing, generalised poverty in their local communities. participants made sense of their predicament in multiple, evolving ways. conclusion: this study contributes to the understanding of the complex predicaments, and sense-making, of persons who have acquired a disability in a rural, impoverished global south environment. keywords: disability; global south; rural; qualitative; adjustment; social model; medical model. introduction almost everyone will experience a form of impairment or disability (either temporary or permanent) in their lifetime (world health organization [who] 2011). more than 1 billion people in the world live with some form of disability, of whom nearly 200 million experience considerable difficulties in functioning (who 2011). ageing populations as well as global increases in chronic health conditions such as diabetes, cardiovascular disease, human immunodeficiency virus/acquired immunodeficiency syndrome (hiv/aids), cancer and mental health disorders mean that the prevalence of impairments could rise. in the low-income context of africa, many people are further disabled by high rates of malnutrition, infectious diseases, violence and injuries and natural disasters, with an estimated 60 million – 80 million people living with disabilities (who 2011). people with disabilities are estimated to be 15% of the general population, but possibly higher for those living in poverty (who 2011). in the last south african national census, the prevalence of disability was estimated to be 7.5% (statistics south africa 2016); however, this may reflect under-reporting because of stigma or limitations of measurement tools (maart, amosun & jelsma 2019). the world report on disability acknowledges disability as a complex, dynamic, multidimensional concept (who 2011). in 2001, the international classification of functioning, disability, and health (icf) was adopted by the united nations, defining disability as: [a]n umbrella term for impairments, activity limitations and participation restrictions … disability is a complex phenomena that is both a problem at the level of a person’s body, and a complex and primarily social phenomena. (who 2002:2, 9) from this grew a body of research examining different understandings of disability, investigating how people from different cultures view the onset of disability, the nature of disability and appropriate interventions for alleviating disadvantage in the lives of people with disabilities (buntinx & schalock 2010; gannotti et al. 2001). literature from southern africa reflects this complexity of experiences of disability. for example, haihambo and lightfoot (2010) found that in namibia, disability is often seen as being caused by supernatural forces, and so is viewed negatively by community members; however, views may change if people are closely connected to a person with a disability. maart et al. (2019) implemented a survey in two communities in south africa to demonstrate how disability experiences vary significantly between communities based on the factors such as language, culture and infrastructure. given the range of disability experiences, it is important to explore the experiences of people with disabilities in various, and particularly under-researched communities. this article explores these experiences within a low-resourced global south context. in such circumstances, the onset of disability can compound and complicate existing disadvantage in a host of ways, by adding to the shared community burden of poverty and already limited opportunities for participation in domains such as employment and education (hosseinpoor et al. 2016). the site for this study, the vhembe district of limpopo province, south africa, has a largely mining-driven economy with the second lowest gross domestic product per capita out of the country’s nine provinces (statistics south africa 2019). the province also achieved the lowest school-leaving certificate pass rate in the country in 2018 and has been shown to have a highly dysfunctional public health system (mukwevho 2018). a small amount of research on disability has been performed in limpopo. for example, luruli, netshandama and francis (2016) interviewed people with disabilities attending six rehabilitation centres in the vhembe district. they found some positive experiences such as good interpersonal relationships with community rehabilitation workers, who adapted to their clients’ needs and provided encouragements. however, there were also negative experiences of poor-quality assistive devices, community barriers towards accessing services and infrequent community worker contact. other research in disability conducted in this community includes work on the perspectives of physiotherapists working with people with disabilities (maleka, franzsen & stewart 2008), experiences of parents with children with disabilities (sadiki & mashegoane 2019), experiences of students with disabilities at universities (mudau, netshisaulu & ncube 2019; phukubje & ngoepe 2017) and clinical or prevalence research (geere, hunter & jagals 2010; hundt, stuttaford & ngoma 2004). the current study aimed to give voice to the everyday lives of adults with disabilities in limpopo, with particular focus on how individuals made sense of experiences of inequality and exclusion when acquiring a new disability. given that many disabilities occur as a result of medical conditions, and that people with disabilities have often received treatment in line with the biomedical mode of healthcare practice, disability has often been viewed with both the ‘problem’ and the ‘treatment’ being confined within the individual body (buntinx & schalock 2010; watermeyer & swartz 2016). within some non-western societies, as well as certain faith communities worldwide, understandings of disability are also affected by belief systems that give prominence to such forces as fate and divine punishment which are beyond the reach of human intervention (shuttleworth & kasnitz 2005). pfeiffer et al. (2003) also note that disability has often been viewed as a tragedy, a disgrace, shameful, the result of sin or a punishment from god. people with disabilities are regularly seen as objects of pity or a burden to others. this article explored these experiences through the prism of the debate regarding medical versus social causality of disability-related disadvantage. approaches to understanding disability inequality have, in the field of disability studies, been dominated by a binary view, which separates the somatic from the social (haegele & hodge 2016; luruli et al. 2016; shakespeare 2014). much disability research in the past has assumed a clear division between struggle caused by bodily reasons and that rooted in social causation (shakespeare 2006; watermeyer 2013). the medical model encapsulates the biomedical response to disability with the view that physical impairments alone are responsible for disadvantaging people with disabilities, and that the solution for disability therefore lies in ‘fixing’ individual bodies (haegele & hodge 2016; watermeyer 2013). the social model, on the other hand, asserts that people with disabilities are disadvantaged by social organisation, and that impairment is only an issue in the context of societies that maintain unnecessary barriers to participation (haegele & hodge 2016; watermeyer 2013). however, in feminist disability studies, activists argue that experiences of people with disabilities are grey, complex and cannot be reduced to this binary (haegele & hodge 2016; watermeyer & swartz 2016). this line of theorising acknowledges the reality of pain, fatigue and bodily ‘limitations’ as real aspects of struggle in the lives of people with disabilities, leading to disadvantage that cannot be addressed by altering social arrangements, while also acknowledging the real effects of discrimination and exclusion caused by society. while disability activism and research has come a long way from a binary model (haegele & hodge 2016; watermeyer & swartz 2016; who 2002), experience on the ground indicates that people in south africa may still hold a very medicalised and oppressive view of disability. for example, in south africa, disability grants are still largely assessed only by medical professionals as opposed to a holistic team (gathiram 2008). keikelame and swartz (2016) interviewed south africans with epilepsy who reported that healthcare providers were often untrained in disability and considered their patients as just ‘bodies’ without personal stories and needs, leading to inadequate care. other research in a rural community of mpumalanga in south africa indicated that the icf model and related policies did not accurately capture the experiences of people with disabilities or the barriers that they face and concluded that a focus on context and cultures was integral to improving the lives of people with disabilities (neille & penn 2015). this article builds on phd research previously conducted on the experiences of newly acquired disability in a south african limpopo community. this prior study introduced, but did not explore, themes around the role of witchcraft, functional limitation and social exclusion in disability experiences of the study population (sadiki, radzilani-makatu & zikhali 2018). the present study further develops the theme of the relationship between bodily ‘limitations’ and exclusion in this same study sample. it then uses this theme as a bridge to understand the larger conceptual question about how people with disabilities construct their struggle in relation to the binary conceptual split between disadvantage caused by ‘malfunctioning’ bodies (a ‘medical model’ view) and that caused by social organisation (a ‘social model’ view). we investigate how these two views intertwine in the accounts provided by community members with disabilities, taking cognisance of the influence of resource constraints characteristic of many rural communities in the global south. methodology research design and data collection this study was interested in understanding participants’ perspectives on the process of becoming disabled in a previously understudied population. it therefore made use of a qualitative research design that enables one to gain insight into the informants´ life world or lived experience (creswell 2009; mcmillan & schumacher 2010). qualitative research is suited to providing thick, detailed descriptions of human experience, which require that researchers recognise themselves as co-constructors of knowledge, which will be in part shaped by their identities, perspectives and personal histories (denzin & lincoln 2011). qualitative research that makes use of interviews is useful in developing a deep understanding of a phenomenon, within its unique set of circumstances (silverman 2013). inclusion criteria included persons who were above the age of 18, spoke tshivenda and had acquired a physical disability within the 4 years prior to the research taking place (across the phd period of mid-2010s). using convenience sampling, all members of the limpopo province disabled people south africa (dpsa) were sent an invitation to participate by the first author. seven eligible people agreed to participate. data were collected through in-depth semi-structured face-to-face interviews. the interviews took place in participants’ homes, at their convenience, and lasted approximately 1 h each, in order to make provision for participant fatigue. all interviews were tape-recorded, and the interviewer additionally made hand-written notes. participants were given an opportunity to express themselves in their own words and in their home language of tshivenda. voluntary-written consent was obtained from the participants before data collection. participants participants in this study comprised seven adults (three men and four women), aged between 39 and 47 years, who had acquired a physical disability in the last 4 years. all lived in the vhembe district of limpopo province. physical impairment, as opposed to other forms of impairment, was chosen as dpsa members largely have physical impairments, and therefore, a greater sample could be expected. it also allowed for greater coherence of the data in shared areas such as access to the built environment and transportation. while any data on an under-researched community such as this one is valuable, it must be acknowledged that the findings cannot necessarily be generalised to other populations such as those that are younger or live outside of the rural limpopo context. in addition, members of dpsa may perhaps be more educated, have a higher economic status or be more socially connected than other people with disabilities in this context, and the lack of other forms of disabilities represented in this research is a limitation. reflexivity in making sense of qualitative data, transparency and reflexivity on the part of those collecting and analysing the material is essential (denzin & lincoln 2011). the positionality of interviewers, in particular, will have implications for how interviewees respond to questioning, as shared or divergent identities create silences or affordances in what can be said (gibson & brown 2009). in this study, all interviews were performed by the first author, a choice made deliberately based on her sharing aspects of identity, language and local insider knowledge with the participants. the first author is, like all interviewees, a first-language tshivenda speaker who grew up in a rural area of south africa. she is a parent of a child with a disability, was at the time working towards a doctorate in disability studies and has extensive experience in disability-related community development initiatives in the area where the research was conducted, including the creation of disability advocacy forums and mentoring groups for mothers of children with disabilities. she worked as a provincial manager for the dpsa for eight years, and consequently, three of the participants knew her and four had heard of her. while the first author was no longer with the dpsa at the time of the interviews, this relationship helped foster trust in that the interviewer was known to be genuinely interested in the experiences of the interviewees. the second author, who performed part of the data analysis and write-up, is a person with a disability, clinical psychologist and disability activist. the position of the first two authors as both insiders and outsiders to issues in the lived experience of disability was understood as simultaneously potentially advantageous and disadvantageous – serving to enrich understanding of the material through a degree of standpoint identification, while also presenting the risk of excessively subjective interpretations of the data (gibson & brown 2009). the first author is an insider in that she shares cultural bonds with the participants and the second author shares the experience of being disabled. the authors were also outsiders in that they hold positions of power by virtue of filling the role of the researcher and having higher education qualifications. however, this dual position of the authors allowed for the application of conceptual thinking in terms of disability theory, as well as a standpoint position that supported a faithfulness to the data. data analysis the lead author transcribed the gathered information and translated interviews into english for analysis. to analyse and interpret the data, the descriptive analysis technique of tesch’s eight steps was used (creswell 2009). this includes identifying categories in the transcripts, clustering these categories according to similarities to themselves and the literature and identifying and grouping themes across the categories. findings the following four themes emerged: (1) emotional impact of onset of disability, (2) being introduced to disablist prejudice, (3) being required to take on a ‘disabled’ identity and (4) socio-economic implications of becoming disabled. in the following sections, each theme will be discussed, in turn, and illustrated with verbatim quotations from the interview data. thereafter, a brief discussion and conclusion will be presented. emotional impact of onset of disability the participants in the study were specifically persons not born with disabilities, but instead had all acquired their disabilities when adults. all reported experiencing great emotional turmoil as a result of the inability to use their bodies in ways they used to, and the loss of the ability to perform the roles expected of them within their physical and social contexts: ‘i could not assume other responsibilities as a mother of the family. my body is not functioning well like before.’ (participant, c, female, 42 years old) the participants stated that, in their understanding, a major source of their pain and problems lay in their impairment, even expressing anger towards their bodies for causing the new struggles that they had to experience: ‘yes, disability changes life because for me is difficult to adjust, it limits me, and it is like you were once two but now you are one doing the same job. it changes the plans you had for the future and the success you can achieve is reduced.’ (participant f, male, 44 years old) this way in which participants made initial sense of their disabilities seems to fit with the logic of a ‘medical model’ view, which is a highly pervasive way of seeing disability across most societies. through this lens, disability is reduced to an individual issue wherein individuals are viewed as either a powerless victim or as being responsible for their condition (baril 2015; wendell 1997) – a position that often leads to the individual having to take responsibility for no longer being able to participate in society as before (haegele & hodge 2016; watermeyer 2013). in saying this, the authors acknowledge that recognising bodily ‘limitation’ is not in and of itself representative of the full ‘medical model’ view, but that it does carry a logic wherein the body is regarded as the source of disadvantage. the resultant sense of responsibility may then lead to increased pressure and stress on those with disabilities to adapt and cope: ‘i feel jealous to those who can do things on their own. my physical disability stress; i sometimes feel bitter and neurotic.’ (participant d, male, 41 years old) evidence has shown how the onset of disability occurs for most people, unsurprisingly, against the backdrop of very limited awareness of how disablist exclusion functions, and the reality that it is all around us (watermeyer & gorgens 2013). in such a context, it follows that in these early stages of an acquired disability, one’s understanding of how disadvantage occurs may tend towards ‘medical’ explanations, that is, to most starkly recognising limitations and the impairment. for the participants in this study, a prominent position taken focused on the traumatic and disadvantaging loss of functioning caused by impairment: ‘this is the most painful experience for any human being. it is just unfortunate that you don’t stay with me you would have seen what i am going through.’ (participant b, female, 43 years old) without any way undermining the reality of bodily limitations that the participants struggled with, a closer examination of the anger directed at ‘malfunctioning’ bodies creates a slightly different picture to the ‘medical model’ views expressed above. the subsequent themes that are explored reveal that feelings of individual limitation and anger directed towards the ‘disabled’ body occur within a cultural context of meanings about what disability is, and what it does. being introduced to disablist prejudice the study revealed that the process of becoming disabled not only changed participants’ bodies, but also exposed them to new experiences of prejudice and discrimination (haihambo & lightfoot 2010; pfeiffer et al. 2003). this experience has been referred to as ‘a crash course in the harsh realities of social inequality’ where people who become disabled suddenly are explicitly aware of, and receivers of, the prejudice held by some people without disabilities (watermeyer & swartz 2016:273). morris (2005) considers two common societal attitudes that can, to the extent to which they cannot be resisted, force people with disabilities into a second-class citizen role. the first of these crude stereotypes is that people with disabilities are often assumed to be inherently dependent, like children or animals, in order to complete day-to-day activities. the participants reported experiences of being looked down upon and being patted on the shoulder in a way that is reserved for those in society who are not capable of making their own autonomous decisions: ‘i hate to be treated like a child because of my disability. i have to explain to everyone who help me the cause of my disability and be pitied for [it]. [it] is like i am paying for the help. “shame, sorry,” words i came across most of the time.’ (participant a, female, 45 years old) the second common attitude involves people without disabilities at times responding to people with disabilities as if they do not really belong to their society. some participants reported being called names after acquiring their impairment. for example, u la munna wa tshihole means ‘that disabled man’ in tshivenda, the local language. however, the prefix ‘tshi’ is a derogatory term usually associated with animals and not human beings. the language used by the community to describe the participants illustrates how they were suddenly thrust into a lesser status among their peers without disabilities. from a critical psychoanalytic perspective, such distancing and rejecting attitudes may be understood as motivated by psychological defence mechanisms triggered by the anxieties which disability can evoke (watermeyer 2006). in particular, people without disabilities may wish to avoid seeing bodies that appear different, or adults who appear dependent, as this may be a reminder of threatening realities to do with the universality of human frailty, and of mortality itself (watermeyer 2013). in order to create distance from these anxieties, the dominant group in society instead shifts its worst thoughts and fears onto people with disabilities, constructing this group as the personifications of all that is unwanted in the human condition (watermeyer 2013). fears that we are unlovable, or incapable are instead then given to those with impairments so that we can feel an illusory sense of relief that ‘it is not us that is broken but them’. this often implicit thought process can manifest in various ways and influences how people interpret disability and interact with individuals with disabilities. through experiences like being infantilised, and the language others used to describe disability, participants in the study expressed that they often experienced this implicit and explicit othering from those around them: ‘sometimes i feel shy because i want to be like able-[bodied] people, to escape negative attitudes.’ (participant b, female, 42 years old) ‘being pitied made me feel disempowered.’ (participant b, female, 42 years old) distancing attitudes can have various and far-reaching effects in the lives of people with disabilities. importantly, these attitudes may limit the willingness of communities and governments to provide the resources necessary for individuals to take part in the life of the community, resources that would counteract the effects of the limitations brought on by the impairment itself (haegele & hodge 2016; sen 2000). in line with the social model view, we begin to see how the participants are then not disabled by their impairment but rather, or also, by the exclusionary attitudes of their community. being required to accept a ‘disabled’ identity the participants reported a variety of domains of social exclusion that were experienced as solidifying their new status as marginal citizens. three particular sets of exclusionary interactions identified in this study were those with health providers, with the built environment and with family and friends. health providers a specific example of societal prejudice experienced by the participants was the prejudice against women with disabilities and their sexuality and reproduction. in this study, it was found that health practitioners stigmatised women with disabilities by disparaging their abilities to be mothers. two participants revealed the negative attitudes of health practitioners who expressed shock at seeing pregnant women with a physical disability at reproductive health clinics. one participant said that she was made to feel as if she had committed a sin by becoming pregnant: ‘this is my first-born child. i was asked “how will you take care of your child?” many questions were asked as if i was in court.’ (participant c, female, 42 years old) such treatment embodies a form of dehumanisation, where participants were regarded as less than full members of the human family, not being entitled to engage in sex and reproduction. further, the implication was that people with disabilities are not capable of forming and sustaining reciprocal loving relationships. these prejudiced ideas resulted in the view that pregnant women with physical disabilities must have been raped, and that they would not be able to care for a baby (mgwili & watermeyer 2006): ‘shame … shame … why do you get pregnant out of marriage? you should have used prevention.’ (participant e, female, 46 years old) ‘who will take care of your baby? who raped you? i was asked embarrassing questions by nurses at my local clinic.’ (participant c, female, 42 years old) participants reported that the negative experiences and perceptions resulted in them distrusting health practitioners and losing confidence in their services. in the quotations just cited, however, it is noteworthy that in the use of words such as ‘in court’ and ‘embarrassing’, there was a recognition among participants that the treatment they were receiving was inappropriate and discriminatory. grobbelaar-du plessis (2007) found that most women face a spectrum of gender-based human rights abuses, but these abuses are magnified for women with disabilities because of their social isolation and presumed dependency. women with disabilities are also often not regarded by society as being fit to fulfil the traditional roles expected of women, such as mother, wife, homemaker and nurturer (brodwin & frederick 2010; grobbelaar-du plessis 2007; mall & swartz 2012). even if the participants’ impairments did not impede their ability to have a sexual relationship or give birth to and parent a child, the health providers’ attitudes threatened their receiving of adequate and respectful healthcare. the built environment in daily life, participants quickly discovered immense restrictions in physically accessing public facilities, such as transport and the built environment. besides the reality of material exclusion from participation which this brought, it also communicated an implication of no longer being entitled to belong fully in their community: ‘taxi drivers … are problematic … one day in the morning i waited at the bus stop for two hours because taxis were just passing when i stopped them. i was told to close the door because there is no space for a wheelchair.’ (participant c, female, 42 years old) ‘my capabilities and opportunities are being restricted by an inaccessible environment.’ (participant e, female, 46 years old) the participants reported feeling angry and distressed that they were denied the opportunity to participate equally as they had before. again, there was ambiguity in their views regarding which part of their disadvantage was socially engendered, and which was an unavoidable consequence of a bodily ‘limitation’: ‘i remember the other day i visited my nearest local clinic to collect some medication. it happened that i had to use the toilet. when i got there it was a disaster because the door was too narrow for my wheelchair to get in and i was very pressed. i was very upset with everyone and i did not have any choice but to go back home … by the time i arrived home, i had already messed-up … you know i won’t forget that day. my sister, tell me how will you feel if it was you?’ (participant b, female, 43 years old) exclusion resulting from inaccessible built environments and services not only disadvantages in material, tangible terms, but, as noted above, can also have a malignant effect on emotional well-being, through causing an understandable withdrawal from what are experienced as unwelcoming public spaces. in addition, the lack of usable services can create dependence on friends and family, which may have the effect of confirming harmful and prejudiced stereotypes, implying that people with disabilities are ‘in fact’ not capable of real participation. friends and family alienating responses from the broader community were also experienced in interactions with family and friends. participants reported that their disability put new forms of strain on relationships with family members. this was attributed to increased levels of physical care and support needs relating to their impairment. this is particularly pertinent in a low-resource setting, where there is a lack of availability and accessibility of paid professional assistance for people with disabilities (who 2002). what appears significant here is how dependency needs, which as noted are often based on unnecessary inaccessibility of environments and services, can distort even long-standing relationships. watermeyer and swartz (2008) note how the need for care can confuse relational boundaries, creating a situation in which people with disabilities may feel obligated to remain grateful, patient and flexible, even in the face of very difficult circumstances. in the study, participants described feeling ashamed and self-conscious about their need for assistance, a position from which it is likely to be difficult to express one’s feelings and needs clearly. this can have important implications for self-advocacy, and the articulation of experiences of prejudice or marginalisation: ‘for me i feel as a burden to my household members. i constantly need help from others.’ (participant e, female, 46 years old) the authors found that there can be extreme emotional vulnerability at play in circumstances where one, as a person with a disability, requires daily assistance with intimate aspects of life, while at the same time is aware of devaluing attitudes, or even disgust, held by the person who one is assisted by. for example, some participants experienced openly prejudiced responses from family members who were embarrassed by their presence. painfully, one participant told of how family members discouraged him from attending a family funeral, placing the comment in the guise of it relieving all from a difficult physical challenge: ‘it is sad … can you believe that my family refuse me to attend family and community funerals because no one will have time to assist me and everyone will need to know about my disabilities.’ (participant g, male, 41 years old) this experience felt profoundly rejecting and contributed to the sense of isolation and non-belonging felt by the participant because of prejudice, rather than simply impairment. on an ongoing basis, participants reported that their disability resulted in diminished quality contact with family and friends. the inaccessible environment, in combination with attitudes towards disabilities, meant that while these participants were not necessarily purposefully ‘hidden’ from the community, they were often restricted to their homes and isolated from mainstream society: ‘… [disability] affected my life as all the people i used to socialise with are no more there; i had to start to create new friends who understood my new condition.’ (participant c, female, 42 years old) these experiences of altered friendships, the emergence of prejudiced attitudes and the withdrawal of support created a great sense of distress among participants. however, they often felt restricted in their ability to express these feelings to those around them as they were expected instead to be grateful for the care they did receive and not to be a burden to others: ‘i do appreciate for the support. i always make sure that i don’t keep on asking for help because i don’t want to upset anyone because i depend on their support, sometimes i feel as if i am requesting too much and i don’t want to spoil friendship to anyone.’ (participant a, female, 45 years old) the socially engendered constraints maintained over the expression of negative feelings, or objections to exclusion, by people with disabilities, is a well-established issue in disability studies (thomas 1999; watermeyer 2009; watermeyer & swartz 2008). this presence within participants of feelings of rejection resulted at times in instances of voluntary isolation to avoid these feelings being displayed: ‘most of the time i avoid visiting public places and opt to stay home to avoid bothering other people for asking for help.’ (participant b, female, 43 years old) evident here is the predicament of people with disabilities living in inaccessible environments, who are thus forced to rely on assistance from friends and family, potentially harming relationships, and carrying implications for power inequality (watermeyer & swartz 2008). socio-economic implications of becoming disabled it is known that people with disabilities are more likely to be unemployed and experience higher rates of poverty with fewer resilience options than their peers without disabilities (wapling 2012). disability and poverty have been shown to interact in complex ways, where functional difficulties may result in reduced productivity, causing higher susceptibility to poverty, while poverty reduces a person’s access to assistive devices, accessible infrastructure and rehabilitation services that could support economic participation (maart et al. 2019; mitra 2018; who 2002). in line with this, since becoming disabled, some participants lost their jobs and sources of income: ‘lack of source of income is a challenge because i am unable to meet the family responsibilities as i used to before acquiring the physical disability.’ (participant f, male, 44 years old) ‘it is not easy; the disability grant is the only source of income for my family.’ (participant d, male, 41 years old) in south africa, all persons with disabilities are theoretically eligible for a disability grant; however, only a small percentage receive one in practice (gathiram 2008). all the participants reported that they receive financial support through a disability grant from the government which reflects their (relatively) ‘privileged’ position in the disabled community. however, even with the grant, they were unable to sustain their families. this problem is especially acute in a low-income setting where all family members may be struggling economically, even if non-disabled. placing further economic strain on the family, participants were firstly unable to contribute to the household via employed work, and secondly, reduced the labour power of the household through their need for care from others. one participant explained that her mother was no longer able to work in order to be available to assist her: ‘my mother was a domestic worker, but due to my physical disability, she could not continue with her job.’ (participant e, female, 46 years old) the authors considered that this may place further strain on relationships, as economic stress may result in implicit or overt resentment of the needs and dependency of the family member with a disability. paradoxically, family members in poor households may also be dependent exclusively on the social grant of the family member with a disability for essential items such as food: ‘this government has made access to disability grant. i am currently receiving disability grant which i receive every month from the government is for me to feed my family and that is the only income i receive in my life unfortunately.’ (participant g, male, 41 years old) one possible unintended effect of being a recipient of social support programmes is that people with disabilities may be viewed as incompetent, as they are unable to make ends meet even though they are seen as already receiving government support (tronto 2010). family members with a disability may even be resented for receiving ‘free’ money from the government, further undermining their ability to ask for the practical help they needed: ‘yesterday i went to my cousins’ house with a 10 kg container to ask for [maize meal]. his wife said bad things to me, she wondered why i could not afford to buy just a mere bag of [maize meal] when i am receiving a disability grant from the government every month.’ (participant c, female, 42 years old) ‘my grandmother also talks too much when i go and ask her for food. everyone will know that i did ask her for food, so it is better not to go and ask her for food because she cannot keep it to herself. i am pulling hard and i don’t want everybody to know about my difficulties.’ (participant b, female, 43 years old) a further aspect of life on a social support grant experienced by participants was a belief that they should be content – grateful – that they can survive off social welfare, and thus do not need or deserve to be accommodated as full economic citizens, further limiting their opportunities to engage in the community (surender et al. 2010): ‘my uncle told me not to stress about getting job because i am getting disability grant which i can use it to buy food. i am stressed for not getting a job because i have family to take care of. disability grant is not enough for my basic needs, people think that disability grant to persons with disabilities is a lot of money. we are human beings like others and have responsibilities too.’ (participant a, female, 45 years old) ‘in 2011 there was a community project in my village and community members were priorities for employment. i submitted my personal details to the community leader on time. after two weeks the project started, and i was not called to start working with others. when i make follow up to the project leader, i was told that i must give chance to other community members because i am getting disability grant.’ (participant a, female, 45 years old) research from south africa indicates that while grants may offer temporary relief, if people with disabilities are unable to access employment and education, they will continue to be marginalised from society and continue to be dependent on government support (loeb et al. 2008). this vulnerability is exacerbated by the fact that in rural areas of south africa such as those where the study took place, there are few resources to provide services, roads and infrastructure for the general population, further leaving persons with disabilities behind (mitra 2018). discussion participants in this study experienced complex changes to their bodies, their relationships, their environment and their economic participation after becoming disabled in adulthood. their stories reflected an intimate intertwining of aspects of the disability experience stretching from impairment effects to material barriers to participation, as well as the harmful, even corrosive presence of psycho-emotional disablism within the community (morris 2005; thomas 1999; watermeyer 2013). as experienced by the participants, it is not only broader society but also family and friends who often hold explicit and implicit attitudes of rejection and shame towards a person with a disability (friedman 2019; parr 2007). these attitudes may reflect the broader societal response towards disability, where people without disabilities may overprotect, pity or reject those with disabilities to insulate their own identities from the stigma of ‘broken’ bodies (watermeyer & swartz 2008) and often do this by over-medicalising people with disabilities and putting responsibility on them to adapt to society (haegele & hodge 2016; neille & penn 2015). this can, and for the participants it did, result in extremely painful experiences of alienation and even dehumanisation. for the participants in this study, becoming visibly disabled meant coming up against previously invisible forces, which served to push them towards a marginal social position. the participants at times expressed deep feelings of emotional turmoil and hopelessness regarding their impairments, citing their disability as painful and limiting. this reflects an understanding of disadvantage being something which emanates from the body – a view that leans towards a medical model logic. however, throughout their accounts, this ‘medicalising’ sense-making was intermingled with stark recognition of barriers to participation as incidences of social injustice, amid the growing realisation of their new positioning as marginal. physical barriers reported by the participants further contributed to feelings of alienation, as they found themselves in a new world containing multiple levels of exclusion. some of the clearest incidences of this recognition were caused by the nature of the built environment and transport services, as well as the responses of reproductive health practitioners to women with disabilities. these effects were enacted both interpersonally and structurally, superimposed on the emotional trauma which all described as part of the onset of functional limitation. the authors acknowledge that this is a modest study with a small sample size. in addition, the sample may be relatively ‘privileged’ compared to poorer or less connected people with physical disabilities or other less recognised disabilities in this community – who may experience even more marginalisation. however, we believe that the data provide accounts that demonstrate meaningful links between lived disability experience and conceptual understandings. if we consider the experiences and sense-making of the participants in this study in terms of the three disability paradigms described earlier – that is, the medical model, social model and feminist views – we find that the data reflect an interweaving of all three perspectives. while most participants described having attributed exclusion to their impairment within the first few years of acquiring a disability, this view fluctuated and changed in response to different life experiences, to include greater, and even vehement, recognition of the reality of material barriers to participation. however, taking this increasingly social model-oriented view did not limit recognition of neither relational aspects of disablism (reeve 2006; watermeyer 2013), nor the reality of functional limitation because of impairment. in this, the participants’ understanding of their social and embodied circumstances mirrored a feminist view, which augments the social model with aspects of life with disability, which exist in the private realm, are relational as well as structural, and are not amenable to binary logic (shakespeare 2006, 2014; thomas 1999). in this way, the accounts gathered in this study showed how views demonstrating both social model and medical model logics served to illuminate relevant aspects of participants’ experience in a complementary manner, rather than constituting mutually exclusive positions. further, while not the only framework relevant to exploring disability experiences, the feminist perspective proved useful in illuminating other aspects of the participants’ accounts, making provision for the lived realities of power, oppression and disadvantage starkly seen in poorer communities (hall 2015). these realities are important to understand in order to make meaningful policy and cultural shifts towards disability inclusion. (neille & penn 2015). as an experienced government official working in community-based disability development in the area, and a mother of a child with a disability, the first author’s own reflections revealed that she brought hope and expectation to the study that participants would have received more community support, and that they would have understood their experience of disadvantage as originating mainly in the environment rather than the nature of their bodies. however, the author had to acknowledge that this viewpoint may have been influenced by her educational and employment background, and that adequate support and disability activism, bringing emancipatory understandings of disability, may not be readily available in this rural context. acknowledging this ‘outsider’ perspective encouraged the author to reflect and report on the full experiences of the participants, even if painful and indicative of a gap in what she was able to provide while working in disability support in this community. in 2007, south africa ratified the united nations convention on the rights of persons with disabilities which enshrine principles of inclusion and equity for people with disabilities in all spheres of society (swanepoel 2020). however, in the global south context of rural south africa in which poverty and a lack of social services is a common problem, the participants in this study experienced the disadvantaging effects of shaming attitudes, over-medicalisation and a lack of appropriate impairment-related assistance, threatening to cement harmful stereotypes about both the dependency of people with disabilities and their entrapment in poverty. put another way, what was in evidence were environmental factors which threatened to bring the most harmful stereotypes about rural life with disability into reality, along with victim-blaming ‘medical model’ logic. this was further confused in this rural setting, where participants may be both marginalised by physical and attitudinal barriers, and perceived as receiving ‘special treatment’ via disability grants. for anyone, the experience of having to struggle to survive and access basic resources such as food embodies an attack on dignity. however, when one has essential support withheld, and must also face denigrating attitudes from others, people with disabilities describe how hard it can be to hold onto a clear sense that one is as deserving as anyone of having their rights to inclusion fulfilled (reeve 2006; thomas 1999; watermeyer 2013, 2016). while the limitations caused by impairment are real and have real effects, the attitudes that fuelled social interactions and the rural setting that contributed to inaccessible environments greatly exacerbated the disability experiences of the participants in this study. conclusion this study, we believe, has gone some way to exploring the ways in which rural south africans make sense of their experience of physical disability, and how this sense-making fluctuates and moves between impairment-based and socially orientated meanings. it shows a complex and intertwined experience of multiple barriers that are relational, embodied, material and structural, which together can affect one’s ability to feel fully accepted by their community. the nuanced meaning-making revealed in the data shows up the benefits of an analysis of disability disadvantage which is not caught in binary logic. indeed, over the past two decades, disability studies have seen an integration of approaches that previously might have been marked out in opposition to one another, as ‘medical’ versus ‘social’ model views (haegele & hodge 2016; shakespeare 2014). the body and psyche are very much part of the stories of disadvantage being told in this study, echoing the affective turn in the social sciences more generally (watermeyer 2013). but the constraining reality of structural disadvantage, delimiting not only what one may access, but also who one is able to be, is just as evident. at the time of onset of an impairment, people need social support perhaps more than at any other time in their lives. instead, the participants in this study experienced a profound destabilising of many of the foundations that afford any community member a sense of security and belonging. the sample size in the study was small, and included persons living with only one form of impairment, both of which are limitations. nevertheless, we believe that experiential data help to give voice to the multi-level complexity of socially engendered disadvantage surrounding disability, which is of relevance to the designing of interventions that are effective and locally relevant. it is desired that this article will stimulate future research to further contribute to our shared understanding of the predicaments of people in rural, global south contexts, who acquire disability against the backdrop of ongoing, generalised poverty, in support of a more informed response from both government and community sectors. acknowledgements the authors wish to acknowledge the contribution of the participants, who generously gave us access to their stories, in the hope of shedding light on the life predicaments of rural people with disabilities in south africa. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions c.m.s., b.w. and n.t.a. contributed equally to the design and implementation of the research, to the analysis of the results and to the writing of the manuscript. ethical considerations ethical approval was obtained from the university higher degrees committee (uhdc) of the university of venda (11618453). funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created 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proscovia s. nantongo department of education, faculty of educational sciences, university of oslo, oslo, norway department of special needs studies, faculty of special needs and rehabilitation, kyambogo university, kampala, uganda citation nantongo, p.s., 2019, ‘framing heuristics in inclusive education: the case of uganda’s preservice teacher education programme’, african journal of disability 8(0), a611. https://doi.org/10.4102/ajod.v8i0.611 original research framing heuristics in inclusive education: the case of uganda’s preservice teacher education programme proscovia s. nantongo received: 13 jan. 2018; accepted: 26 july 2019; published: 21 oct. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: recent education-related research has raised concerns about the persistent exclusion of vulnerable learners in uganda. the revised primary teacher education curriculum of 2013 marked an ambitious yet inconclusive attempt to advance the implementation of inclusive education but has encountered deeply entrenched sociocultural exclusionary practices among education experts. objectives: this study aimed to explicate education practitioners’ interpretations of uganda’s flagship inclusive education programme in preservice primary teacher education. method: drawing on the conceptual vocabulary of frame analysis and the qualitative analysis of individual and group interviews and classroom observations, the interpretations of inclusive education implementation in preservice primary teacher education in uganda were examined. the participants included policy design experts, curriculum design experts and classroom practitioners. results: three main findings emerged. firstly, interpretations of inclusive education displayed a narrow framing heuristic of inclusive education as a perfunctory, daily practice rather than a pathway for reflective, inclusive pedagogical engagement. secondly, the heuristic encouraged the treatment of inclusive pedagogy as a ‘label’ under a specific rubric referring to sensory impairments or disabilities – a historical device for sociocultural exclusion. thirdly, inclusive education was a praxis but was misframed from its original intentions, causing tension and resentment among practitioners. these findings contribute to the debates on the sustainability of inclusive education beyond preservice teacher education. conclusion: uganda’s flagship inclusive education programme in preservice primary teacher education was fraught with tensions, ambiguities and an overt, urgent need for change. keywords: inclusive education; framing analysis; socio-historical factors; narrow framing heuristic; teacher training. introduction in most sub-saharan african countries, and in uganda in particular, numerous studies on global education reforms have revealed contradictory implementation strategies to achieve the set goals (charema 2010; hardman et al. 2011; munene 2016; shevlin & kearns 2010; zajda 2018). nketsia, saloviita and gyimah (2016) and slee (2013) have particularly raised concerns on the prevalence of knowledge uncertainties about best practices, leading to a state of trial and error among inclusive reform implementers (i.e. teacher educators). what is at stake therefore is the sustainability of the reform implementation as prioritised by the united nations educational, scientific and cultural organization (unesco) (2014). in uganda, education reform, geared for all school-eligible learners, has failed the majority of the once-enthusiastic vulnerable population (munene 2016). instead, they continue to be socially victimised, making them prey to the same reforms once intended to offer alternatives. for instance, slee (2013) argues that exclusively designing specialised teacher training programmes and establishing special grants for categorised learners are a myopic interpretation of the intent of inclusive education and directly contribute to exclusion. amidst such contradictions, o’sullivan (2005) calls for research-based solutions to failing reforms. since 2013, uganda’s preservice teacher education programme has undergone a substantial reform process. for example, as the product of the reform, the present teacher education curriculum includes two course subjects – special needs education (sne) or inclusive education and information, communication and technology (ict) – among other changes. this reform process is in line with the unesco’s1 aim to establish ‘institution-wide approaches to education [for] sustainable development (esd) at all levels’ and ‘to jointly develop a vision and a plan to implement it’ (unesco 2014:35). uganda’s focus on broadening the existing grade iii teachers certificate in the primary teacher education programme by including special needs/inclusive education was a social change towards social justice for all (gallagher 2006; shevlin & kearns 2010; slee 2013; unianu 2012). however, the curriculum reform effort had no specific policy streamlining the activities unlike other educational practices, such as universal primary education. in this context, inclusive education implementation in uganda partially overrules the argument that ‘policy development and philosophical thought outpace practice’ (hodkinson 2010:61). further research on global education reforms reveals that individual states cherish different sociocultural values perhaps because of their historical backgrounds. and as hargreaves and shirley (2009) assert, there is a direct relation between those values and the extent to which the education reforms are achieved. in other words, the states’ multi-faceted definitions of given reforms determine the unique ways of implementation (zajda 2018). moreover, individual and social perceptions of such reforms create a sort of social values continuum, which, in turn, becomes a social determinant for reform implementation (coleridge 1993; slee 2013; wertsch 1979). we question to what extent a particular reform conforms to the social goal at present. the present study, therefore, aimed to explore how uganda’s revised grade iii teacher education curriculum addresses the understanding of inclusive education interpretation. specifically, in 2015 and 2017, a convenience sampling was performed to recruit participants from five public institutions representing three levels: (1) policy design experts (macro-level), (2) curriculum design experts (meso-level) and (3) classroom practitioners in teacher training (micro-level). the structure of this article is as follows: firstly, the article describes discourses on inclusive education strategies in uganda. secondly, it presents how framing a theoretical concept and framework as proposed by goffman (1974) addresses the participants’ interpretations of inclusive education. then, it outlines the research methodology, followed by a presentation on the results. next, the three main findings are discussed through the lens of framing theory. finally, the article highlights concerns for future research on the sustainability of inclusive education and teacher education. context of inclusive education in uganda inclusive education is a priority area identified by the higher education and multimedia in special needs education and rehabilitation (enable), a partnership project aimed at developing teacher competence at higher institutions of learning in uganda, kenya and tanzania. inclusive education has developed considerably since uganda achieved its independence in 1962, with efforts concentrated on addressing and amending several types of distributive injustice, including education and economic inequalities (munene 2016). despite some individualised educational achievements in terms of ethnicity and gender, nearly six decades after independence, uganda bureau of statistics (2017) reports that the economic gap between the poor and the rich steadily widens. in terms of gender parity, since the 1990s, steady progress has been reported on primary education enrolment, completion rates and academic performance assessments (ministry of education and sports [moes] 2016). moreover, such progress has not been replicated or reported among learners with special needs (ojok & wormnaes 2013; riche & aniyamuzaala 2014). as coleridge (1993) stresses, the close relationship between poverty and impairments exacerbates certain sociocultural exclusion practices. the colonial and post-colonial eras provided institutionalised special education for persons with disabilities in specified schools and homes. persons with impairments were hitherto believed to be socioculturally uneducable and were thus excluded from formal education (karugu 1988). however, persistent worldwide agitation for access to formal quality education for all school-eligible learners, in a socially healthy environment, led to the enrolment of high numbers2 of previously segregated and excluded learners in regular schools3 in the case of sub-saharan states (munene 2016). however, unesco (2014) report reveals emerging setbacks in learner enrolment, retention and education quality. as o’sullivan (2005) recommends, the report highlights an urgent need for policy research to support practical solutions to educational exclusion. scholarly works on educational reforms report contradictory understandings and interpretations of reform processes at different levels (elton 1979; terzi 2014; unicef 2015). in the chapter, ‘education can change society?’, elton (1979:72) advances the argument that ‘successful change is a result of the social value attached to it’. according to torre (2017), specific social environments attract particular responses from specific participants. elton (1979) and torre (2017) both shed light on the interplay between global inclusive education discourses and ugandan sociocultural perceptions of inclusive education amidst diversities. based on the inadequate interpretations and implementation of earlier educational reforms (altinyelken 2010; charema 2010; munene 2016), the researcher assumes that there is knowledge uncertainty among educational practitioners about inclusive education reform as has been the case with others. in fact, according to tschannen-moran and chen (2014), inadequacies in education reform initiatives arise from mismanagement. uganda’s action, in 2013, to launch a systematic, national-scale preservice primary teacher training initiative by revising the existing preservice teacher training curriculum to include sne4 course content addressed the global demand for rethinking inclusive education (unesco 2014). the aim of the present study was to contribute to the understanding of how this nationwide programme, which addresses inclusive education for preservice teacher preparation, has been implemented. meanwhile, a full-fledged distance learning programme – leading to a diploma in sne – has been in existence for some years under the ownership of kyambogo university. inclusive education reform discourses operate on three levels: macro-level, which is the political or macro-managerial wing; meso-level, which is the expert or supervisory wing; and micro-level, which is the field operational wing. these levels are the subject of this study because of their intertwined roles as mentioned in the methodology section. and in that view, their mutual interpretation of the education reform leads to achieving the reform goals. conceptual vocabulary of framing analysis bateman (1976) and goffman (1974) pioneered the research on framing. this concept has had a significant influence on both conceptual and methodological analyses of present social problems (benford 2010; benford & snow 2000; dalkilic & vadeboncoeur 2016; davies 1979; hetland 1996; johansson 2007). numerous research traditions in the field of framing analysis are grounded in goffman’s (1974) fundamental question, ‘what is it that’s going on here?’ – a question that draws attention to ‘an individual’s particular point of view’ (goffman 1997:226). an individual’s interpretation of the experience in a given encounter constitutes his or her perceived reality (goffman 1974; johansson 2007). moreover, no individual has the capacity to establish any sort of absolute reality. rather, the individual must be able to locate, perceive, identify and label his or her experiences in relation to the sociocultural context (benford 2010; benford & snow 2000; goffman 1997). in doing so, the individual frames his or her experiences accordingly. the sociocultural contextual framing of inclusive education using the lenses of goffman (1974) to frame the understanding of the implementation of educational reforms, we observe what hetland (1996) describes as double framing within which he cites the possibility of conflicts. for example, he urges that ‘frames are both inclusive and exclusive’ (hetland (1996:15). the tendency to include while framing, may be framed by others as excluding. in other words, what may be experienced by framing is a diversion from the intended social goal – such as inclusion for all. these hiccups, or what bacchi (2000) describes as misframing, occur: [n]ot only because reform efforts are opposed, but because the ways in which issues get represented have a number of effects that limit the impact of reform gestures. [i]ssues get represented in ways that mystify power relations and often create individuals responsible for their own ‘failures’, drawing attention away from the structures that create unequal outcomes. (p. 46) therefore, to explore the implementation of inclusive education, we must seek meanings in the socially shared goals within the sociocultural context, as alluded to by lev vygotsky (wertsch 1979), and expanded on by his proponents (such as cole & engeström 1993; cole & gajdamaschko 2007; daniel 2009). and as a social quality, voogt, pieters and handelzalts (2016) suggest that collaborative framing in inclusive education (global reforms) leads to success in the stakeholders’ implementation process. similarly, davies (1979) and bacchi (2000) argue that the real implementation process lies within social limitations. for example, language, as a fundamental social resource, frames individuals’ perceptions within social networks. language has an enormous influence on framing cultural practices, such as attitudes and actions (coleridge 1993; torre 2017; wertsch 1979). for instance, coleridge (1993:100–101) cites an inconclusive debate on languaging (framing) as in the phrases, ‘people with disabilities’ or ‘disabled’ or ‘impaired’ people. but there is no doubt, that social conceptions and perception ultimately influence the extent of social inclusion (coleridge 1993) such as formal education. relating inclusive education to destitute learners prejudices the quality of education. the conceptual vocabulary of framing analysis, therefore, guides this study’s understanding of participants’ interpretations of inclusive education implementation at three interrelated levels: macro, meso and micro. the assumption was that successful implementation of inclusive education, like other global education reforms, largely depends on sociocultural realities. study design and methodology this study was based on qualitative data collected in two phases, in 2015 and 2017, from five key institutions in primary teacher education in uganda. one institution had authority over policymaking, one was responsible for teacher curriculum development and three were primary teachers’ colleges (ptc) involved in classroom teaching. uganda has 45 public ptcs with more or less shared socio-historical characteristics (hardman et al. 2011) such as founding bodies, same recruiting process, same curriculum, among others. this study is a part of the enable partnership project, which aims to develop teacher competence for inclusive education at higher institutions of learning. selection criteria for participants in phases i and ii the three ptcs were conveniently sampled based on the researcher’s experiences working with them in previous national academic engagements. this prior knowledge enabled the completion of the data collection process within the desired timeframe. otherwise, other ptcs could have provided reliable data (fraser & bedford 2008). in phase i, one of the enable project managers contacted the managers of the five institutions by email and telephone, relaying our intentions to study inclusive education implementation from the perspective of preservice teacher education. with this background, these managers mobilised and recruited all of the study participants. a total of 16 participants (4 men and 12 women) from four institutions attended group interviews. the group sizes ranged between three and five participants, while the interview durations ranged between 45 min and 1 h and 25 min. the variations occurred during the interview process. the fifth institution offered one participant for an individual interview. in this phase, we aimed to strengthen the enable partnership by accessing reliable information from valid sources so as to establish a research rationale for this study as emphasised by mcdermott, gospodinoff and aron (1978). in phase ii, i conveniently identified 12 individual interviewees, including nine teacher educators (four men and five women) from the three ptcs that participated in phase i. using a list of teacher educators provided by the ptcs, i contacted potential participants by telephone and sought their consent to participate. this was the most convenient means at the time, given the ongoing activities of the ptcs. as a result, three out of 12 participants also attended phase i. in addition, three in-service teacher trainees (one man with experience teaching a child with cerebral palsy and two women with sensory impairments) were purposively recruited based on their personal experiences with the grade iii teacher training programme. in addition, they were at the time among the in-service teacher trainees attending the sne or inclusive education programme which the ptc teacher educators facilitated. four lessons were also observed. the duration of the interviews and the class observations varied. complying with ethical research standards, all recruited participants gave informed consent, and their contextual anonymity is preserve in this article by using only the institutional levels. data generation procedure in phase i (2015), the research interest focused on the implementation of inclusive education in teacher training. in phase ii (2017), the data and experience acquired in phase i facilitated an in-depth study of the participants’ interpretations. the data were generated from three main sources: (1) four group interviews, including one group with three persons from a policy institution (macro-level) and three groups from ptcs with a total of 11 persons (micro-level); (2) 13 individual interviews, with one curriculum developer (meso-level), nine teacher educators and three student teachers (micro-level); and (3) four classroom observations (micro-level). during the interview process, i deliberately attempted to stress the inclusive education discourses in the teacher training programmes by asking open-ended questions and using probing techniques. from the ongoing data analysis, it was revealed that, in phase i, some individuals’ contributions dominated the group sessions, while others exhibited passive tendencies, which were displayed as general consensus. in phase ii, i took a different approach, focusing on individual interviews to document personal experiences (merrill & west 2009) based on reality (huang & carspecken 2013; jørgensen & phillips 2002) while limiting hearsay utterances. in addition, the use of ambiguous prompts, such as ‘i also want to take this opportunity to request that you tell me about yourself, if you don’t mind’ enhanced the respondents’ feelings of liberty. as in other scholarly works (beynon & dossa 2003; dautenhahn 2002; maynes, pierce & lasletts 2008), the participants’ narratives potentially enabled access to self-understandings and critical interpretations of individualised experiences. the data generation was not built on standardised questions, but rather on a flexible technique. firstly, the researcher observed classroom teaching facilitated by the same teacher educators participating in the study. then the researcher presented the general interests of the study, permitting the participants to self-identify. the interview process unfolded based on what had already been shared, for example knowledge regarding inclusive education from observed lessons, previous trainings, implementation possibilities for inclusive education in teacher training and ict trainings, stakeholders’ willingness/readiness to promote inclusive education in colleges, general teacher education pedagogical strategies for inclusivity and possible recommendations for effective implementation of inclusive education reform. in brief, the interview process was backed by the unesco (2014) roadmap for implementing the revised curriculum and the policy discourses on staff recruitment. the interviews were audio-recorded and the classroom observations were video-recorded to preserve the original messages. the researcher coded the data along the subject of inclusive education reform and teacher education. samples of the coded data from the interviews were presented to the research group of which the researcher was a member for critical analysis. despite the perceived bias of insider research (taylor 2011), my prior knowledge of the field created a synergy between what was visible and what was relative to the socio-historical practices, which fischer (2017) recognises as a strength of qualitative research – for example, asking the right question with the right tone to elicit a genuine response. framing analysis of inclusive education practices framing analysis was used to understand how the participants interpreted the implementation of inclusive education in the preservice teacher training programme. nvivo software was used to transcribe the data from the recorded interviews and the classroom observations. multiple readings of the transcribed data generated categories or frames corresponding to the study aim of exploring education practitioners’ interpretation of inclusive education in primary teacher education, and scholarly insights on framing formed the study’s analytical strategy. further analysis of findings by per hetland (1996:15) revealed four ways in which ‘double framing’ can emerge: ‘conflicting, competing, incompatible or compatible framing’. similarly, there is a strong assumption that educational practitioners interpret the implementation of inclusive education reform within particular frames. ethical consideration all possible ethical measures with respect to data generation, storage, processing and reporting were detailed and submitted to the authorities beforehand. in response, the author received a clearance certificate (ethical clearance number: nsd 53561). the author has not deviated from the position unless advised. presentation of the findings the frame analysis identified two themes: (1) the conceptualisation of inclusive education and (2) the empirical interpretation of the implementation of inclusive education in the teacher training programme. conceptualising inclusive education in preservice primary teacher education most participants in both phases, and at all three levels, used the concepts of sne and inclusive education interchangeably as a matter of convenience in the present study. however, sne directly refers to teaching children with impairments or disabilities, and inclusive education refers to the physical presence of learners with impairments alongside learners without impairments. throughout the study, there was only one instance when a teacher educator referenced poor and orphaned families (vulnerable learners) as beneficiaries of inclusive education. the following submission from a meso-level participant clarifies on the practical interpretation of both concepts: ‘if [the impairment] is out of order, then you must recommend to—we have specialised schools in case a person cannot hear completely. are you following me? but there are these special needs for which, in a class, you can afford inclusion. a person has a leg injury; i mean, a leg disability, so he is able to hear, listen and write and keep up with others. so we teach [teachers] to manage that.’ (curriculum expert, 2015) some participants cited related conceptual misunderstandings of inclusive education among stakeholders. some micro-level participants shied away from inclusive education because they perceived it as pedagogically inferior and simply a convenient policy tool. at all levels, the participants revealed a mismatch among various stakeholders’ interpretations, largely influenced by deeply seated negative mindsets towards academic competence of impaired children. an example from an interviewee with sensory impairment underscores the importance of social attitudinal change. she quoted a previous encounter with a ptc staff member, who said, ‘for us here, we don’t train blind people. how [could] we handle you? we do not know how to train blind people!’ (director of studies in charge of teacher training) the interviewee concluded that such attitudes directly undermine the implementation of inclusive education at all levels. this view was common in participants at all levels. the ugandan government’s conceptual interpretation of inclusive education at teacher training level focused on social inclusivity through the construction of a model ptc with ramps and wide doors to promote physical accessibility. as one meso-level participant put it, ‘[y]es, let’s allow them in class. let’s teach them [and] use materials that are locally available and not harmful’ (teacher educator with sne exposure). this modelling strategy of inclusive education could be replicated by policy designers and infrastructure developers. in addition, the identification and categorisation of learners (with impairments) were emphasised in teacher trainings to guide their choice of teaching approaches ‘[b]ecause some … teachers cannot tell that the child has this kind of challenge’ (micro-level group participant, 2015) and provide the appropriate support required, such as the ideal classroom seating arrangements for learners with hearing impairments (micro-level participant 2017). the revised curriculum also included basic sign language and braille trainings, and strong emphasis was placed on assessing learners’ abilities to cope with regular classroom norms. frames of inclusive education implementation in primary teacher education the second theme considered how the participants perceived the implementation of inclusive education in the teacher training programme, and the findings were consistent with my initial assumption that inclusive education relies on a multi-level approach. at the policy level, the renaming of the department of special needs and inclusive education in the moes was purposively done to prioritise both sne and inclusive education in policy discourses. as described by the curriculum experts who participated in this study (meso-level, 2015), both special and inclusive schools exist; the former are primarily meant for sne learners, while the latter are ordinary or regular or normal schools that admit children with special needs. one participant emphasised that the minimal requirements for inclusion are the ability to hear, write and, most importantly, keep up with others in normal schools. the findings revealed progressive efforts to enact a comprehensive policy provision to regulate inclusive education practices in uganda. in fact, during policy consultations, several stakeholders pledged to support inclusive education. one macro-level group participant noted, ‘[i]t is the way to go’ (policymaker, 2015). further findings revealed that the ministry was negotiating international and domestic partnerships to support sne or inclusive education implementation among teachers in uganda and the region. external support has spearheaded previous initiatives in the provision of sne since uganda gained independence in 1962 (karugu 1988). although there was consensus that the revised curriculum can effect inclusion, most interviewees expressed shared doubt on the content, framing the curriculum as insignificant and inadequate to prepare the teachers to teach learners with sensory impairments. the curriculum implementation process was under-resourced. according to the curriculum expert, the revised curriculum did not target learners with severe impairments; rather, such learners would be recommended for special schools with specialised teachers. he held the opinion that, instead of overloading the current curriculum, a separate preservice teacher training programme on sne should be established. the threat to the curriculum was also raised by a macro-level group participant: ‘everybody has said [it] very many times. i don’t know whether [overloading the curricula has ceased] or not. it is this [role of the] research [findings] again to tell us.’ (policymaker, 2015) at the practical level, one hour of teaching per week was allocated to sne or inclusive education to equip preservice teachers with pedagogical skills. as a practice, teacher educators are specialists in particular subjects, which they teach at the ptcs. the practice is the same for sne. however, at the start of the revised programme in 2013, only four out of 45 ptcs had recruited sne teacher educators. since then to date, the process was halted because of financial implications at the macro-level. in fact, the interviewees confirmed that all 45 ptcs lacked sne teacher educators, although a few individual ptcs had privately arranged for sne teaching. furthermore, it was clear from the classroom observations that the sne content was focused on passing the national examinations. furthermore, the ptcs incurred unbearable financial costs by hiring external teaching manpower in order to sustain sne implementation. these challenges were acknowledged by participants at all three levels. in-depth probing on why this situation could not be challenged revealed resentment. representing many voices, a macro-level participant regretted the lack of a comprehensive policy that would address implementation from the policy viewpoint. meanwhile, a meso-level participant (2015) declined the role of persuing policy-makers to perform their duly designated duties. rather, he preferred to stick to his role. the revised curriculum added ict as a subject; as such, every ptc in uganda must establish ict facilities to enable teaching and learning – an integration strategy towards education digitalisation. one of the sne teacher educators commended the ict contributions to what she described as a ‘shallow syllabus, coupled with limited access to relevant textbooks’. by downloading materials from various learning sites, she was able to give relevant resources to the students. however, using ict at the ptcs was seldom and isolated; the ptcs could not financially sustain open ict access because of large volumes of internet bundles and other technical repairs, leading to inevitable restrictions. for example: ‘where i have been [at other ptcs] and where i am [now] and with [the] experience which i get from other [teacher educators] from other colleges, i and those other teacher educators, we do not use ict for teaching. i have only observed the ict person teach computers as [a] kind of demonstration. that’s all, but not with these other subjects of the curriculum’ (teacher educator, 2017). the findings from the three levels revealed appalling conditions, including teacher educators’ pedagogical knowledge uncertainty, insufficient logistics, overloaded curriculum content, competitive academic demands, a lack of specialised teachers and a high teacher educators to student ratio. furthermore, most teacher educators were reluctant to implement inclusive education citing compromising working conditions. according to the interviews and the revised curriculum, the preservice teachers training programme had two obligatory teaching practice sessions (i.e. 2 weeks of preparation at a ptc and 4 weeks of teaching). a unified voice from all participants at all three levels conceded that within such a short time frame, coupled with examination-oriented performance, inclusive education could not be sustained. on the issue of teacher educators’ sne competences, the meso-level participant reaffirmed that teacher educators had acquired impeccable skills and were adequately prepared to teach preservice teachers. the findings revealed that the curriculum reform programme was never intended for ‘sophisticated skills’ (2015). discussion this section discusses the three frames intertwined by the two interrelated themes identified in the findings. firstly, inclusive education practices were subject to a heuristically narrow framing in which the participants conceived of their interpretation as belonging to the broader sphere of actionable implementation but did not always realise or fully articulate their efforts. in other words, inclusive education intentions and actions were imperfectly actualised and separated by a wide divide. secondly, related to the narrow heuristic framing was the participants’ tendency to express reality in normative terms (how things should be) and not in descriptive terms (how things are), creating a sense of complacency and idleness. thirdly, as a direct corollary to the first two frames, the normative manifestations of the concept of inclusive education, as articulated in the classroom observations and the interviews, were fraught with tensions, ambiguities and, simultaneously, an urgent need for change. narrow heuristic framing of inclusive education a prime finding at all levels was the framing of inclusive education as a concept associated with disabilities or impairments and sometimes destitution. coleridge (1993) describes this tendency as labelling. increasingly, critical scholars have been contesting the role of labelling, pointing out its detrimental consequences: ‘labels disable because they focus on the person not as a person but as a case or an object’ (coleridge 1993:99). in contrast, proponents were more concerned with its ability to identify, mobilise and direct attention to appropriate interventions (coleridge 1993; torre 2017). with no intention to take sides, sociocultural scholars contend that the meanings of concepts emerge within specific engagement (coleridge 1993; hutchison 1995; rogoff 2003). from this understanding, we can conclude that inclusive education viewed from the global perspective ignores the cultural power of labelling for actual implementation, which is why this narrows down to disabilities or impairments. the revised curriculum made inclusive education as an option for learners with impairments, preparing teachers by focusing on skills, such as sign language and braille, and addressing physical accessibility, such as with the construction of ramps. furthermore, the teacher training programme emphasised identification and assessment with the aim of ‘sorting’ learners. for example, deaf and blind learners were less favoured for inclusion than learners with physical disabilities. the framing of inclusive education within disability or impairments had a sociocultural potential to restrict the range of expectations (unesco 2014) and pedagogical decisions (coleridge 1993). further evidences of conceptual perceptions of inclusive education across the three levels suggested a double frame. hetland (1996) discussed the double framing of a multi-level conflict when one issue is favourably presented but shortly results in contrasting outcomes. despite the goal of inclusive education to empower every member of society to contribute to social justice and sustainable social development (unesco 2014), prevailing disabling implementation conditions, such as the failure to appoint sne teacher educators to operationalise the revised curriculum, contradicted the government’s commitment to inclusion. the current implementation struggles arose from the precarious practice of confining inclusive education within a specific rubric of sne without thorough scrutiny of its practical consequences. the lack of specialised personnel and the lack of inclusive pedagogical training of general educators widened the gap among subjects and promoted individual teaching among teacher educators. the systematic promotion of a divide between sne or inclusive education and other subjects and teacher educators is of great concern. as coleridge (1993) observes, negative social attitudes develop with separate programmes, hampering most implementation efforts for persons with disabilities. the allocation of sne or inclusive education, as a subject, to specialised teacher educators with knowledge of impairments or disabilities limited other teacher educators from trying inclusive pedagogical strategies in their subjects, discouraging them from conducting critical pedagogical analysis to potentially promote inclusion (bullough, jr. 2010; slee 2013; veck 2014). slee (2013) observed that further exclusion becomes imminent when available social resources are simply ignored and demobilised. therefore, based on the findings, i have concluded that the curriculum revision discourses did not directly translate into practice (hardy & woodcock 2015), at least not when the interpretation was restricted to impairments (coleridge 1993; hardy & woodcock 2015). tendency to express reality in normative terms uganda has stood tall in the region for formulating policies to guide the local implementation of global agendas (munene 2016; unesco 2014). however, the mobilisation of necessary resources to effectively implement such agendas is still contentious. the mere (at times, vague) presence of policies does not guarantee effective implementation (bacchi 2000; corbett 2001; hardy & woodcock 2015; hodkinson 2010). in the present study, there is an implied impression that inclusive education discourses were unanimously supported by macro-, mesoand micro-level participants; this positive gesture was demonstrated by the launching of the revised curriculum. these normative responses were pronounced at the group level but tended to disappear during individual interviews in which most participants expressed concerns about inadequate institutional support and additional workloads. specific concerns included understaffing, inadequate instructional materials, shallow curriculum content and limited knowledge of inclusive education. although the study found incidences of sne teachings and a nationwide strategy to digitalise teaching and learning by establishing ict centres at every ptc, most micro-level participants, as well as the researcher’s observations, indicated a double framing of reality. such documented revelations raised concerns about whether the revised curriculum actually transformed pedagogical practices in the teacher training programme. it remained debatable whether the multi-level approach to curriculum reform achieved the intended outcome set by the inclusive education reform. normative responses about inclusive education were more common in the group interviews and among the macroand meso-level participants, but less common among individual interviewees and the micro-level participants. this state of conflict indicates a sociocultural strategy to avoid conflicts that may culminate in job-related consequences. increasingly, educational reforms are highly politicised and may lead to consequences, such as personal disagreements among implementers (munene 2016). tensions, ambiguities and a simultaneous, urgent need for change overall, the study findings present a potential challenge to the sustainability of inclusive education (unesco 2014) in uganda (altinyelken 2010; gallagher 2006; hardman et al. 2011). the findings display high possibilities for tension, with a push towards the idea that ‘inclusive education is the way to go’ (macro-level group participant, 2015) regardless of the potentially inadequate capacities of the implementers. this tension stems, in part, from ambiguities in the conceptual understanding of the inclusive education reform discourses. as hetland (1996:83) acknowledged, in the process of translating policy discourses, we encounter concept ‘ambiguity, inconsistency or out spoken disagreements’. and therefore, inclusive education is no exception. the perceived internationalisation of the unesco reforms indirectly compels member states to adopt a normative tendency in addressing social justice. it is not a historical coincidence, therefore, that the implementation of inclusive education operates, in most cases, on external finances and technical support (hardman et al. 2011; munene 2016). in stronger terms, the sustainable implementation of inclusive education relies more on a state’s policy rhetoric than on actionable commitment. as zajda (2018) observes, policy discourses, especially those emanating from global rhetoric, provide little room for critique. rather, the would-be implementers, such as teacher educators, neither reject nor suggest possible solutions to implementation challenges. more often than not, policymakers inadequately consult implementers for their field-based views (bacchi 2000; shevlin & kearns 2010). therefore, a sense of resentment and varying degrees of frustration are expressed; as a meso-level participant submits: ‘i strongly insist [dealing with implementation challenges] is not [in] my control. it is not my business, and i do not promise to [intervene]’ (curriculum expert, 2015). the kind of attitude exhibited in the above resignation can be equated with ‘to whom it may concern’, and was common with other participants. no surprise therefore, that in general many ptcs partially implement the curriculum reform. further still, the findings corroborate terzi (2014)’s study finding in the sense that there was limited evidence that the teacher educators were pedagogically competent for inclusive education, causing knowledge uncertainty that is likely to promote resistance to attitude change among practitioners. hardy and woodcock (2015) and unianu (2012) assert that attitudes and perceptions strongly influence individuals’ daily practices. in the case of uganda, the findings present inclusive education as intended for not only learners with impairments, but also learners hamstrung by poverty. considering the would-be financial burden on a guardian for educating (munene 2016) a disabled child, any state attempt for free inclusivity is a great achievement, although we contend that inclusive education goes beyond accessing physical environments to considering inclusive pedagogies among teachers (dalkilic & vadeboncoeur 2016; unesco 2014). the integration of ict infrastructure at ptcs, if effectively implemented, would likely contribute to knowledge building, strengthen cooperation among teacher educators and develop partnerships to enhance inclusive education in teacher education. in the context of uganda, as remarked by the policymaker, ‘inclusive education is the way to go’. but according to most participants, insufficient implementation of inclusive education was blamed on what bacchi (2000) deliberates on as the poor packaging of reforms. indeed, other studies recognise teachers as the effective agents of educational change (altinyelken 2010; florian & linklater 2010; gallagher 2006) but the lack of institutional support to address the implementation challenges mentioned above has a direct effect on the reform sustainability. one micro-level participant (2015) challenges the state in ensuring that staff recruitment is urgently completed. otherwise, current misconceptions of inclusive education reform seem to promote affirmative exclusion by simply allowing vulnerable learners physical space with the regular schools, while at the same time limiting their fully pedagogical participation for whole human development. from the findings, we can conclude that the understanding of inclusive education implementation among education practitioners lacks consistency and serves as a convenient strategy to circumvent unpleasant consequences – because reform experts say that inclusion is the way to go. however, most interviewees across the three levels problematised inclusive education implementation as a complex socio-economic commitment to change that would most likely create tension among implementers (especially with the lack of inclusive pedagogical competencies). pending demands by teacher educators ranged from institutional and technical support to matters of personal well-being. in my view, the present inclusive education initiatives simply confirm what munene (2016) observes to be efforts that earn international recognition but still leave much to be desired. in such a case, zajda (2018:3) appeals to ‘logic and common sense when addressing agendas constructed within a global perspective’. in other words, inclusive education reform implementation should commence from a local socio-historical viewpoint, considering the ‘limitations as well as the strengths’ (hargreaves & shirley 2009:147) and avoiding unnecessary heuristics in practice. after all, good policy discourses remain in theory until they are operationalised within a given context (hardy & woodcock 2015). conclusion the three main frames discussed in this study support the following conclusions: (1) inclusive education remains synonymous with special (needs) education and is largely perceived as designed for learners who have impairments and disabilities or/and live in poverty; (2) labelling and categorising learners, teachers and systems significantly affects the daily practices of inclusive education; and (3) the teacher training programme under the revised curriculum fails to meaningfully address inclusive pedagogy – a potential misframing of the inclusive reform intentions. the desired ability to mobilise social resources, generate constructive criticism and build consensus on critical knowledge for implementation is neutralised by the misconceived institutional pedagogical support in preservice teacher education. study limitations this study presented and discussed findings generated in september 2015 and january 2017 after the curriculum revision in 2013. the time difference between phases i and ii of data collection may have had in some way affected the validity of the study conclusions as it is the same as the time difference between the final data collection and the present publication of the findings. furthermore, using both qualitative and quantitative research methods would have increased the generalisability of the findings on the framing of inclusive education in the teacher education programme. finally, the limited time spent by the researcher in the field may have aided some fallacious claims by the participants. acknowledgements the author is sincerely grateful to all the anonymous participants for their commitment to this study, along with university of oslo and kyambogo university for the technical and professional guidance and norhed-enable project (uga-13-0020) for funding the project. competing interests the author declares that there are no forms of compelling force that interfered with the process taken to produce this article. authors’ contributions p.s.n. is the sole author of this article. funding the study was funded by the norwegian agency for development cooperation (norad) under its programme norhed-enable project (uga-13-0020) that seeks to develop capacity in higher education and research for development. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the author takes full responsibility for all the views expressed in this article and she has endeavoured to observe the research ethics. references altinyelken, h.k., 2010, ‘curriculum change in uganda: teacher perspectives on the new thematic curriculum’, international journal of educational development 30(2), 151–161. https://doi.org/10.1016/j.ijedudev.2009.03.004 bacchi, c., 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dordrecht. footnotes 1. unesco’s (2014) roadmap for implementing the global action programme on education for sustainable development has five priority action areas: (1) advancing policy, (2) transforming learning and training environments, (3) building the capacities of educators and trainers, (4) empowering and mobilising youth and (5) accelerating sustainable solutions. 2. high numbers refer to a single class size of over 100 learners of diverse needs, manned by one teacher (in most cases). 3. regular schools are education settings accessed by all of those of school-going age who do not need special accommodations. 4. special needs education consists of education interventions and other supports designed to address special learning needs. special education mainly comprises the education of children with disabilities, usually in special schools or institutions. the concept of children with special educational needs has been extended from students who have physical and other disabilities to include pupils who are failing in school for a variety of other reasons (ministry of education and sports 2007). abstract introduction obuntu bulamu: an african intervention model parents’ involvement in the obuntu bulamu intervention methodology results discussion summary of major findings and shortcomings acknowledgements references about the author(s) ruth nalugya mrc/uvri & lshtm uganda research unit, kampala, uganda spina bifida and hydrocephalus associations of uganda, kampala, uganda harriet nambejja mrc/uvri & lshtm uganda research unit, kampala, uganda claire nimusiima mrc/uvri & lshtm uganda research unit, kampala, uganda elizabeth s. kawesa mrc/uvri & lshtm uganda research unit, kampala, uganda geert van hove faculty of psychology and educational sciences, ghent university, ghent, belgium janet seeley mrc/uvri & lshtm uganda research unit, kampala, uganda london school of hygiene & tropical medicine, london, united kingdom femke bannink mbazzi mrc/uvri & lshtm uganda research unit, kampala, uganda faculty of psychology and educational sciences, ghent university, ghent, belgium london school of hygiene & tropical medicine, london, united kingdom citation nalugya, r., nimusiima, c., kawesa, e.s., nambejja, h., van hove, g., seeley, j. et al., 2023, ‘obuntu bulamu: parental peer-to-peer support for inclusion of children with disabilities in central uganda’, african journal of disability 12(0), a948. https://doi.org/10.4102/ajod.v12i0.948 original research obuntu bulamu: parental peer-to-peer support for inclusion of children with disabilities in central uganda ruth nalugya, harriet nambejja, claire nimusiima, elizabeth s. kawesa, geert van hove, janet seeley, femke bannink mbazzi received: 14 sept. 2021; accepted: 29 apr. 2022; published: 30 jan. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: obuntu bulamu, a peer-to-peer support intervention for children, parents and teachers to improve the participation and inclusion of children with disabilities (cwd), was developed and tested in uganda. the intervention consisted of disability-inclusive peer-to-peer training and support activities. in this article, parent participation in and evaluation of the intervention are discussed. objectives: the study aims to evaluate the acceptability and feasibility of the intervention. methods: a qualitative afrocentric intervention study was implemented in 10 schools in wakiso district in central uganda. researchers purposely selected cwd aged 8–14 years, their peers and parents from 10 primary schools with on average three cwd per school. a total of 64 study parents (33 parents of cwd and 31 peers) were interviewed at baseline and endline. two focus group discussions were held with 14 parents at midline. parents also participated in a consultative meeting about the intervention design at baseline and two evaluation and feedback workshops at midline and endline. thematic data analysis was conducted. results: findings showed that parents found the intervention inspiring, acceptable, culturally appropriate and supportive, as it built on values and practices from their own cultural tradition. parents reported that the intervention enhanced a sense of togetherness and belonging and helped them to develop more positive attitudes towards cwd and disability inclusion. they felt the intervention increased participation and inclusion of cwd at home, school and in communities. conclusion: the obuntu bulamu peer-to-peer support intervention is an acceptable, culturally appropriate intervention with the potential to improve inclusion of cwd. further studies are recommended to measure the effectiveness of the intervention. contribution: the paper contributes to existing evidence that there is need for more afrocentric interventions, which built on cultural values and practices. interventions based on indigenous values have a greater potential to be acceptable, can foster integration and are likely to be more sustainability to achieve disability inclusion. in the article we describe parental perspectives of the obuntu bulamu intervention, an intervention to improve inclusion of children with disabilities, which was designed by children, parents, teachers, educationalists, and academics from uganda. keywords: inclusion; participation; inclusive education; peer support; belonging; ubuntu; obuntu bulamu. introduction the convention on the rights of the child (crc) states that the family has the key responsibility to ensure the fundamental rights of children. the family is the primary setting within which children are cared for and parented; it is where the first significant relationships develop and the foundations of children’s development take place (carter & boezaart 2016; lawson 2006; united nations children’s fund 1989). degbey and saee (eds. 2012) observed that the extended family can meet the emotional needs of all involved as a cohesive unit, which ideally provides economic, social and psychological security to all its members. adinlofu (2009) mentioned that the family ensures procreation of children and provides for the early care and training of children. recognising the critical role that the family plays in the inclusion and provision of care for children living with complex disabilities has resulted in shifting from focusing on the child to considering the needs of the whole family (rosenbaum et al. 1998). according to adinlofu (2009), performing the responsibilities of raising and relating to children in such a manner that the child is well prepared to realise his or her full potential as a human being requires interpersonal skills, which make emotional demands. several interventions, such as parenting and stress management interventions and inclusive education, have been piloted to promote the inclusion of children with disabilities (cwd) across a variety of settings (simplican et al. 2015). given the difficulties faced by parents of cwd, a range of approaches and programmes have focused on supporting parents with parenting skills and engagement, for example, programmes covering interactional, instructional and family systems, as well as positive behavioural support (breiner, ford & gadsden 2016). these programmes include training in supporting parents with knowledge, attitudes and practices that promote the children’s physical and mental development and prevent the occurrence of emotional and behavioural problems, youth crime, risky behaviour, exploitation, discrimination and violence against other girls and boys (choudhury & jabeen 2008; roper 2014; shenderovich et al. 2018; siu et al. 2017). parental involvement for children with cwd is crucial because parents have a unique understanding of their child’s needs and therefore are regarded as the best advocates in asserting their children’s rights and making decisions for them (ceka & murati 2016; öztürk 2017). in addition, it has been argued that if parents are deeply involved in the inclusion processes of their children, their worries about their children’s futures will decrease (mafa & makuba 2013). although there have been notable and creative changes within the global disability-inclusive development, there is growing recognition that the approaches adopted to achieve the goals of universal access and quality education and family-centred interventions to increase parent involvement in disability inclusion are inadequate (goldman & burke 2017; united nations children’s fund 1989; world economic forum 2015). issues highlighted within the adopted approaches include the failure to engage parents and local communities in supporting education, embracing a holistic approach to disability inclusion, acknowledging the complexity of the barriers impeding children’s access to school and listening to the concerns expressed by children themselves concerning their education. there is also a failure to build a culture of education in which all children are equally respected and valued that addresses children’s rights to act whilst participating and living in a learning arena or to ensure schools are vibrant centres for community action and social development (green 2007; kamenopoulou 2018; stofile 2008). mitra and shakespeare (2019) argued that there is a need to reconsider selecting approaches that are relevant to aspects of life and replace and/or supplement activities and participation with a more holistic concept. indigenous concepts have the potential to promote acceptance (bannink mbazzi et al. 2020) and active participation and uncover the positive and the ambivalent views of disability and assistance (miles 2003). an indigenous peer-to-peer support intervention for inclusion (obuntu bulamu) was piloted to evaluate if the intervention is acceptable and can potentially improve attitudes of peers and teachers towards cwd in school, participation of cwd at home and school and the quality of life of cwd. the intervention consisted of a peer-to-peer training package over two school years and involved parents, teachers and children. in this article, findings are described regarding the participation by parents in, and their evaluation of, the peer-to-peer support component within the obuntu bulamu intervention. obuntu bulamu: an african intervention model obuntu bulamu is a luganda term for an accepted and consistent behaviour that signifies a shared set of values, which promote well-being, togetherness and unity. it is closely linked to the ubuntu philosophy (i am because we are), which has been described as a key component of african disability discourse (berghs 2017; chataika & mckenzie 2013; mugumbate & nyanguru 2013). the obuntu bulamu framework, which is based on this concept, starts with recognition and belonging. the emphasis is upon the importance of belonging (the attachment to people and places in a person’s life) before being (who the person is) and becoming (things the person does through life) can take place, which is explained elsewhere (bannink mbazzi, nalugya & van hove 2019). the obuntu bulamu study explores african concepts of disability and inclusion with an emphasis on belonging and family and community responsibilities. the intervention was developed and tested with cwd, parents, teachers, academics, health and rehabilitation workers and community and district leaders in uganda (bannink mbazzi et al. 2020). the intervention promotes social responsibility, use of culturally appropriate methods and locally available curricula and materials to achieve change. the overall study hypotheses are that the intervention will result in the following outcomes: improve inclusion and participation in school, resulting in increased education access, retention and learning outcomes of cwd, classroom and playtime interaction of cwd, their peers and teachers, as well as inclusive teaching methods and attitudes used by teachers. increase inclusion in the home, resulting in increased participation in daily living activities and home interactions between household members and cwd. improve inclusion in community activities, leading to improved attitudes of community members towards cwd and increased participation of cwd in community activities. improve participation of cwd and their families in research, including in data collection, interpretation of findings and dissemination of results. improve quality of life for cwd. in this article, qualitative study findings will be discussed for outcomes (2), (3) and (4) from the parents’ perspectives. the theory of change (figure 1) highlights the pathway from the context, the intervention and the measures to outcomes and impact. figure 1: theory of change for the obuntu bulamu intervention. figure 1 shows the study’s proposed intervention pathway and components that were expected to cause change. it outlines the different intervention packages and levels and the specific changes that were expected because of the study being implemented. the arrows show causal pathways that were likely to determine the direction of the relationship between these changes and how they lead to the long-term outcomes and impact to which the intervention is intended to contribute. parents’ involvement in the obuntu bulamu intervention parents of cwd and their peers were involved in the peer support intervention through a community disability group to enable support at the family, school and community levels. they were engaged throughout the intervention cycle through a baseline consultative meeting and interactive evaluation workshops at midline and endline. in the interactive workshops, 160 study participants (parents of cwd, parents of cwd’s peers, cwd and their peers, teachers) and representatives from kyambogo university and the ministry of education and sports (moes) and district education office took part. in november 2019, preliminary study findings were disseminated at a stakeholders’ workshop and parents provided input into their component for future parent peer-to-peer intervention. the intervention the parents received consisted of three training sessions for parents and quarterly support activities delivered by ‘focal parents’ over a period of two years. the focal parents had participated in a pilot study in which they had received training on inclusive education practices and had expressed an interest in participating in future studies. the ‘focal’ or ‘peer’ parent had multiple roles: he or she provided a listening ear and emotional support, shared information and assisted a parent to raise awareness and address other issues linked to disability inclusion, such as poverty and sometimes marital issues. focal parents visited parents at least once in a school term over a period of two years. in case of difficult circumstances or absenteeism of the child at school, the focal parent conducted additional visits. the three disability inclusion group training sessions that parents received focused on togetherness and belonging. the group training was conducted by ugandan disability inclusion experts. the training was organised on a termly basis over a one year school period. the training was a 1-day participatory group session which aimed to promote critical thinking, problem solving and peer support in relation to disability inclusion. the training sessions focused on inclusive education (the meaning of inclusive education in uganda, disability models and trends, rights associated nationally and internationally with disability and reflections on the challenges faced in raising a child with a disability), the role of parents in the learning process (supporting the child’s learning at school and home and parent–teacher meetings) and supporting parents in raising awareness in their communities and school to promote inclusive education (through community activities and visits to schools and homes). the training included parents of cwd and parents of the peer children who had been selected to provide peer support to cwd. methodology study setting, design and participants this qualitative afrocentric intervention study was implemented in 10 communities in the wakiso district in central uganda. the overall study used both culturally adapted ‘international standards and tools’ (also described as an adaptive evaluation approach by carden and alkin (2012) and chilisa and major (2015) and more qualitative and ‘afrocentric’ methods (mkabela 2005). the study was conducted between 2018 and 2019 in wakiso district, uganda. a total of 64 parents (33 parents of cwd and 31 peer parents of children without disabilities) were recruited to participate in the study: 33 families with a cwd from 10 mainstream primary schools were purposively selected based on existing data about the child’s age, school class, impairment and impairment effects, and the 31 peer parents were identified through the peers selected by cwd. after cwd were selected, each one of them was asked to select a peer from their class. this process was guided by the child, with suggestions from the class teacher and parents. peers were often playmates, assistants or caretakers in the current class setting who had shown an interest in the cwd. after peers expressed an interest, parents of each peer were contacted. all the participants received information about the study and parents or caregivers signed written consent forms, whilst children with the cognitive capacity who agreed to take part assented. data collection the obuntu bulamu study collected quantitative and qualitative data from children, parents and teachers. this article describes the findings that came from the data collected from in-depth interviews and focus group discussions (fgds), as well as training and consultative meetings and workshops, as shown in table 1. table 1: data collection tools, timelines and purpose. qualitative data were collected to assess perceptions and acceptability of the intervention on peer support under the parents’ component (see table 1). this included baseline and endline key informant interviews (kiis) amongst 124 caregivers and their peers (62 caregivers and 62 peers). two midline-focused group discussions were conducted with caregivers of cwd (one with eight women and one with six men). two consultative or validation workshops were held with 126 participants including children, parents, teachers, community-based rehabilitation workers, academicians, district and ministry officials. the kiis and fgds were moderated by two female research assistants, trained and experienced in both quantitative and qualitative data collection in social science research studies in the region. both are ugandan nationals fluent in luganda, the language spoken in the central region of uganda. during the fgd they were aided by a note-taker. quality checks were conducted by the investigators, but none of the investigators participated in fgds or kiis in order to prevent influencing responses by their presence. the kiis were conducted in luganda at the parents’ homes or another place of choice. the fgds were held on weekends in a meeting room in the area where parents resided. on average, kiis lasted 45 min whilst fgds lasted 90 min. all kiis and fgds were audio-recorded, transcribed verbatim, translated in english and back translated by native luganda speakers with a good education in english. written informed consent was obtained from all participants. training reports were written by the training facilitators, research team members and peer parents after every training session. the reports included the topics covered in the training and feedback and questions asked by parents, as well as recommendations. consultative and validation workshop reports were written by the research team members after the meetings and included the preliminary study findings shared, feedback received and recommendations for the next phase of data collection or study. data analysis analysis of kii and fgd data were managed using nvivo 10 (qsr international, melbourne, australia). data were reviewed following a thematic approach using framework analysis, a matrix-based system for organising, reducing and synthesising data (vogel et al. 2013). a codebook was developed by three study team members and imported into nvivo 12. the thematically organised data were reviewed and synthesised into meaningful themes, and quotes were selected to highlight, explain or describe relevant themes. data saturation was discussed by the analysis team, and they were informed about the number of fgds and kiis conducted. the analysis provided an in-depth understanding of participants’ perception of the intervention, interactions with the intervention components, mechanisms of impact and how these affected intervention outcomes. ethical considerations ethical approval for the study was obtained from the uganda virus research institute research ethics committee (ref. no. gc/127/18/02/633) in entebbe and the ethics committee of the faculty of psychology and educational sciences of ghent university (bannink 2017/6). overall permission to conduct the research was obtained from the uganda national council for science and technology (ref. no. hs ss4557). results participant characteristics the sociodemographic characteristics of the 64 parent participants are summarised in table 2. out of 33 parents with a child with a disability, four had more than one child with a disability. amongst the peer parents, one had a child with multiple disabilities. a total of 89% of the parents were female. the parent’s relationship to the child were mostly as the mother 57 (89.06%), followed by 7 (10.94%) fathers. table 2: demographic characteristics of the participants. the median parental age was 36 (sd = 11.83). the majority were married and had completed primary school. the average household size was 4.8 (sd = 2.05, range 1–9) for parents with cwd and 5.3 (sd = 3.6, range 0–15) for peer parents. the average number of children per household was 4.1 (sd = 1.84, range 1–9) for parents of cwd and 4.0 (sd = 2.50, range 0–12) for peers’ parents. children with a disability were more often in lower classes (usually for younger children), for example, in primary 2, 5 out of 10 (50.00%) cwd were aged 10, and 5 out of 11 (45.45%) peers were 8 years old. out of the 7 parents who reported to earn between ugx 200 000 and 400 000 a month, 6 (85.71%) were parents of cwd and one (14.29%) was the parent of the peer counterpart. more parents of cwd, 4 (80.00%), earned between ugx 400 000 and 600 000 compared with the peer parents, where there was only 1 (20.00%). intervention outcomes the summary results of the parents’ component of the obuntu bulamu intervention are shown in figure 2. the thematic content analysis identified three recurrent themes from the participants’ narratives, which included: (1) belonging, (2) changing attitudes and (3) participation at the home, school and community level. in line with the intervention framework, these themes exhibited potential to improve inclusion of cwd at different levels. under each theme, the different aspects, mechanisms of change and their outcomes are described. figure 2: diagrammatic representation of the parents’ intervention outcomes. acceptability parents generally said they enjoyed participating in the intervention activities. they expressed their gratitude for being included in the intervention design and evaluation of the study and appreciated meeting not only with the study team but also the teachers and other stakeholders during the consultative and validation meetings. attendance at the three training sessions was high, with 62 out of 64 parents attending the first, 62 out of 64 the second and 60 out of 64 parents attending the third training sessions. the training sessions were held at different schools participating in the study and typically lasted a full day. breakfast, lunch and transport were provided. parents explained that the proximity and familiarity of the training locations encouraged them to participate, as they was easy to reach and access and the timing allowed them to attend to their other daily tasks in the area as well. one of the parents during the fgd mentioned, ‘i can first do some work before i come because the place is near’. the sessions also provided the opportunity to discuss and present infrastructural issues as a group within their children’s school and create linkages between the parents and teachers of the school. the focal parents’ meetings for each term were held at the child’s school, with 30 out of 33 parents and teachers of cwd in the study (six meetings in total over a period of two years). the meeting sessions were always organised in the morning hours and lasted for 45 min – 60 min. according to the participants, this was convenient for them as it allowed them time to go back to their daily business. however, two participants reported to have missed out on sessions because the schedules clashed with their work. some participants initially thought that the focal parents could go ahead with the school meetings and represent the parents when discussing the child’s progress with the teachers. during follow-up visits, the focal parents explained to parents that their direct involvement during the school meetings was very important, as much as the focal parents were present to provide support. the focal parents visited all parents of cwd at their homes as well and also discussed inclusion in the home. during unannounced home visits, focal parents observed the different activities they would find a child engaged in, people who visited the home and the physical environment to facilitate accessibility discussions or interventions; they would also talk to the neighbours (with consent from the intervention participants) in case social inclusion barriers were identified. all parents completed the study, and there were no refusals or withdrawals. belonging and feeling supported parents appreciated group-based activities, mentioning that the group experience was the most inspiring part of the intervention. they explained that at baseline, they used to think they were alone, had children with the worse conditions possible and had experienced the worst. they mentioned that meeting with each other built their confidence and hope, increased a sense of belonging and reduced stigma. participants in the parents’ fgd reported, ‘i keep learning from my fellow parents each time i come’, and ‘[t]his is a well-experienced group. their stories have helped me’; another participant remarked that ‘[l]earning together took away my stress. some of the mothers were very strong and would make you laugh’. both parents with and without cwd were very glad to meet with other parents to share their experiences and feel supported. for example, one of the fgd participants said, ‘having other parents with children with no disabilities participate with us was the best thing. we have got a new family. we no longer feel lonely like we used to’. parents’ changing attitudes towards children with disabilities at baseline, the majority of parents of cwd gave the impression that their children were ‘disabled’ and so had little they could do for school, home and community activities. some felt very protective, not wanting their children to do homework, thinking it was a source of stress to them, whilst others had turned their cwd into ‘small queens’ (term used by parents to refer to someone who waits for others to work for them), hence paying no attention to fostering self-care. similarly, parents might choose to keep their children at home because they believed they were not able to take care of themselves. parents might feel protective and wish to prevent their children from having negative and harsh experiences, an attitude that most likely stemmed from a belief in the diminished aptitude of cwd. persons with disabilities are often not valued by society. a number of parents described their child by their disability, for example, ‘the one with an impairment’ or ‘the one who cannot walk’, hence creating a barrier to their children’s inclusion. the majority of peer parents had not interacted with cwd before, they would say cwd were non-performers and they would avoid them or tell their children not to play with them. at endline, however, the majority of parents described having a more positive attitude about the abilities of their children and the possibilities that could be created to include cwd at the family, school and community level. parents started using different terminologies to refer to their cwd. instead of referring to their child as omulema (the lame one) they would now say omwana wange (my child). during some of the training sessions, persons with disabilities were invited to speak as peer role models. this was appreciated by parents, as they explained that it changed their attitude towards their children’s potential and future and gave them hope. one parent mentioned during an fgd that seeing trainers with disabilities ‘encouraged me so much’. some peer parents had attested at baseline that they were not comfortable having their children associate with cwd, as they used to worry about the causes of disability and were sceptical about cwd’s general potential, but they changed their story at endline. the peer parents explained that as a result of training and their coming together to interact with cwd and their parents, they approved of and even supported their children’s relationships with cwd: ‘i used to scold my son for spending much time with a child with disability, and he could always tell me that the boy is his best friend, that he has to support him. i didn’t know anything about this study; the first time i was invited for the training i was surprised because i do not have a child with disability […] what was taught helped me a lot to understand disability and those living with it. i never used to care for children with disabilities, but after the training, i developed love for these children that i wish all parents can get this kind of training, as it does not only benefit those having children with disabilities but also those without.’ (parent, son is 11 years old, peer child) parents said that their attitudes were important in changing children’s behaviour and that they had a role in teaching their children about inclusion. peer parents in the fgd commented that ‘we parents should talk to our children on how to treat children with disabilities […] they should love and support children with disabilities’. increased child participation at home, in school and the community home participation before the intervention, some parents mentioned that they used to ‘overprotect’ children by not allowing them to participate in any household activities because they were ‘disabled’. however, at endline, both parents of cwd and their peers explained that they were giving their children more roles and responsibilities such as cleaning around the home, washing personal clothes, preparing meals and entrusting them with money to do household shopping, as a result of trainings on child participation: ‘as parents, we had a tendency of not involving our children in day-to-day activities, and modifying our homes was not always a priority, but now i know the importance … i started encouraging her to participate with others in doing household chores, and she is happy.’ (parent, daughter is 8 years old, with disability) parents mentioned spending more time with their children, feeding them better or asking their siblings to play with them after the training sessions. parents explained they had made learning or play materials from local materials together with their children after one of the sessions and were excited about their children’s creativity and ability. parents felt that these changes could be attributed to the skills they acquired in the training and meetings. school participation parents explained that they observed a positive change in school participation of cwd over the course of the study: ‘i have seen many good things since the onset of the study. before it came, children with disabilities in regular schools were discriminated [against], but the study has trained teachers […] and have identified and empowered friends of the children and stopped discrimination […] the teachers and children are all informed, children with disabilities are treated like everyone else and are supported whenever there is need.’ (parent, daughter is 14 years old, with disability) parents’ endline reports showed increased involvement in their child’s learning process at school. they appreciated their new advocacy roles and awareness on the influence they had towards promoting inclusion: ‘before our children had got their toilet, we discussed with my fellow parents, and we told them [the school] that we need a separate toilet for our children [accessible to children with physical disabilities] because the toilets were in a bad condition. the school listened and we got that toilet in our school, and we thank you so much for guiding us.’ (parent, daughter is 8 years old, with disability, fdg2) in addition, parents expressed gratitude over the opportunity for the schools to discuss the child’s progress and concerns to ensure their participation during and outside class. parents mentioned training as an eye opener to redefining of their roles to include checking on the child’s progress (how the child has been involved) at school and emphasising the value of education for cwd. they said they had increased their involvement in their children’s education and now visited their child’s school to meet with teachers more often to ensure their child is supported: ‘i am grateful because i was about to stop my son from going to school, as i did not know how to support him. i was paying school fees, but he wasn’t picking [up] anything from class, nor was he being promoted […] i used to think teachers were not doing their job, but since the start of this study, my understanding completely changed. the teachers now understand how to help him, and he has developed a love for school.’ (parent, son is 7 years old, with disability) parents of cwd also mentioned that they felt included in the educational planning process and that there was intensive cooperation. they eventually felt happy that their children were now more included in extracurricular activities in school such as music, dance and sports: ‘when my boy was in primary 1, teachers used to feel sorry for him that they couldn’t let him do anything. he has a talent in dancing that as a parent i also know but he was never given a chance to join music as they thought he couldn’t manage, and i had also not taken an initiative to explain to them his potential. but after the training that we got on communicating the learning needs to teachers, i discussed with the teachers who too were positive, and my boy is involved in everything. i attend the school speech days knowing i will at least see my boy participating as i keep encouraging him.’ (parent, son is 10 years old, with a disability) focal parents and peer parents identified responsibilities and roles they assigned themselves in schools and communities based on the training and support they received. parents explained that they wanted to create awareness about school inclusion in their communities: ‘what i have to do is marketing it to other parents in my area, i go on talking to them about the school and telling […] parents with children with a disability to take them to the school and not just leave them home.’ (parent, son is 12 years old, with disability) community participation primary care givers reported more support from their neighbours in the involvement of their cwd in community activities. the positive change was attributed to the peer-to-peer approach that encouraged parents of cwd and their peers to come together and get involved in similar activities. this kind of behaviour also fostered the same practice of children coming together and getting involved in similar activities, regardless of their abilities: ‘sometimes when she [child with disability] has not gone to school, i leave her at home with the neighbours with some money to buy her what to eat; they also help me and give her tea, and by the time i come back, i find when she is fine playing with her friends like any other child.’ (parent, daughter is 12 years old, with disability, fgd1) ‘during birthdays, we would not invite others; neither would they invite us, but ever since we got to know his peer, we invite him and he comes along with others without disabilities.’ (parent, son is 10 years old, with disability, fdg2) parents felt a great improvement in social relationships in their communities. for example, one of the male parents explained that he did not know there was a child with a disability in the area where they resided. bringing them together created a platform for interaction, and they can now support each other through play and company: ‘i didn’t know we were neighbours and had a common challenge. we are now free with one another, and our children are allowed to go to my friend’s home to play because i now know our son will be safe.’ (parent, son is 10 years old, with a disability) participants described that the intervention allowed free interaction within communities, as it enabled parents of cwd to freely talk about disability with their peer parents, teachers and other community members, addressing and responding to the diverse needs of cwd. parents described the experience of working together as motivating and encouraging, as it promoted social interaction amongst parents, cwd and their peers: ‘my neighbours used to not to allow their children to play with our child, and her siblings too would leave her behind as they went to the neighbourhood to play. it used to hurt me, but ever since the team visited us and talked to them, each one care about her. they even collect some mangoes and bring for her. neighbour’s children are now coming home, and they are her friends.’ (parent, daughter is 12 years old, with disability, fgd1) overall, parents felt that the obuntu bulamu intervention was an enjoyable and culturally appropriate intervention which can change attitudes towards cwd. parents felt supported by the intervention and felt it improved belonging, participation and inclusion. discussion the obuntu bulamu peer-to-peer support intervention promotes a sense of belonging, togetherness and inclusion through peer-to-peer support (bannink mbazzi et al. 2020). in this study, the intervention was positively evaluated by parents of cwd and peer parents. the intervention enhanced a sense of togetherness and belonging, changed attitudes and practices and improved participation and inclusion of cwd at home, in school and in communities. the study’s findings supported the hypothesis that the peer-to-peer approach potentially supports participation in daily living activities and home interactions between household members and cwd, as well as inclusion in community activities and participation of cwd and their families in research. the findings from the literature reviewed suggest that social difference, identity, power, local context and communal cultural values should be considered when studying inclusion and inclusive schooling. at baseline, parents reported the practices of isolating their children, naming them by their disability and considering participation in their learning process to be a waste of time. such negative attitudes and practices are a key barrier to inclusion (afolabi 2014; afolabi, mukhopadhyay & nenty 2013). parents’ attitudes towards a disability inclusion programme, including the implementation of an inclusive education, are important to promote inclusion (paseka & schwab 2020). further assessment of parents’ attitudes and participation in inclusive education programmes should therefore be given high priority, according to a recommendation by paseka and schwab (2020). previous studies have corroborated this study’s findings and shown that increased parental involvement and support has a positive outcome on a child’s education and behaviour, and newman (2000) observed that this sensitive support promotes the child’s continued engagement in learning activities. parents in our study were enthusiastic about the parent awareness sessions and engagement in school meetings, reporting that they helped them understand and support their children better. similarly, attitude change amongst parents is critical in promoting belonging and togetherness, an area that has been recommended by scholars in the promotion of inclusion (venkatakrishnashastry & vranda 2012). one of the key themes in our study was the benefit of receiving peer-to-peer support. parents in our study reported that training and group-based activities created a sense of belonging, hence feeling supported. several researchers have highlighted how disability is a source of stress to parents (weiss, sullivan & diamond 2003) and have emphasised the importance of parental involvement in disability-inclusive interventions to improve their child’s outcomes (blue-banning et al. 2004). in our intervention, parents described a beneficial outcome for them and their child, which is an important part of the obuntu bulamu approach, which emphasises collective belonging and responsibility towards each other rather than individual child outcomes alone. harris et al. (2015) argued that peer-to-peer support improves community participation. similarly, lloyd, tse and deane (2006) added that ongoing and good quality support is needed to promote social integration of persons with disabilities and their members in the community. parents in our study appreciated the peer-to-peer support received from their neighbours and community and the roles each person could play in supporting one another to collectively achieve a more inclusive environment for all children. however, female parents reported that the limited engagement of their male counterparts was limiting their full support as female parents at both community and family level. it is clear from earlier research that father involvement has enormous implications for men on their own path of adult development, for their wives and partners in the co-parenting relationship and, most importantly, for their children in terms of social, emotional and cognitive development (allen & daly 2002; siu et al. 2017). a larger study is now being planned to increase men’s involvement by including fathers’ training, meetings and their engagement as role models. in conclusion, the obuntu bulamu intervention demonstrated that it is possible to significantly change parental attitudes towards disability inclusion and increase participation and inclusion of cwd in homes, schools and communities. summary of major findings and shortcomings this study describes parent participation and evaluation of a ugandan intervention for children, parents and teachers which aims to improve the participation and inclusion of cwd. parents perceived the programme as an acceptable, culturally appropriate and supportive intervention which can potentially enhance participation and inclusion of cwd at home, in schools and communities. the main shortcomings were the relatively small sample size (n = 64) in central uganda only. the intervention needs to be further tested in a larger study population to be able to generalise findings (a trial was underway at the time of writing this manuscript). acknowledgements the authors would like to thank the children, parents and teachers who participated in this study, the study team and administrative staff of mrc/uvri & lshtm uganda research unit, ghent university, kyambogo university, katalemwa cheshire home, wakiso district education office and uganda’s ministry of education and sport for their support during the design and implementation of this study. they would like to specifically thank dr pamela nizeyimana, dr patrick ojok, winnie aciro, godfrey mugote, olive nabiryo and bongole wamala for their involvement in the implementation of the study. competing interests the authors declare no competing interest. authors’ contributions h.n., c.n. and e.s.k. contributed to the investigation, analysis, writing and review of the article. r.n. contributed to the design and implementation of the study, to the analysis of the results and to the writing of the manuscript. f.b.m. contributed to the conceptualisation, methodology, supervision, funding acquisition, project administration, analysis, investigation, writing and review. g.v.h. and j.s. participated in the conceptualisation, methodology, supervision, funding acquisition and the writing and review of the article. funding information this study was funded by atlas alliance, the flemish interuniversity council – university cooperation for development (vlir-uos), the international federation for spina bifida and hydrocephalus and the research foundation – flanders (fwo). the funders were not involved with the study design, data analysis or manuscript preparation. data availability the data that support the findings of this study are available from the corresponding author, r.n., upon reasonable request. disclaimer the content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the funders. references adinlofu, e., 2009, 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(european patent office), 2013, data processing system and method for assessing quality of a translation, ep2535822a3. weiss, j., sullivan, a. & diamond, t., 2003, ‘parent stress and adaptive functioning of individuals with developmental disabilities’, journal on developmental disabilities 10(1), 129–135. world economic forum, 2015, incheon declaration and framework for action for the implementation of sustainable development goal 4, unesco, paris. abstract introduction methodology research findings conclusions references footnotes about the author(s) lara bezzina private, mosta, malta citation bezzina, l., 2019, ‘disabled people’s organisations and the disability movement: perspectives from burkina faso’, african journal of disability 8(0), a500. https://doi.org/10.4102/ajod.v8i0.500 original research disabled people’s organisations and the disability movement: perspectives from burkina faso lara bezzina received: 14 feb. 2018; accepted: 23 jan. 2019; published: 29 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in burkina faso, the disability movement is rather weak, both in terms of funding and staffing – its range does not extend far outside the capital city and is largely dependent on international non-governmental organisations (ingos). despite the huge number of grassroots disabled people’s organisations (dpos), many of these organisations do not function beyond the occasional meeting and celebration of the international day of persons with disabilities. the reasons for this are various, including dependency on external funding (such as from international organisations), lack of access to resources, being dependent on voluntary members, and lack of organisation. objectives: this article looks at the functioning of – and politics governing – dpos in burkina faso, their significance in the lives of people with disabilities and the challenges they encounter. method: this article is based on research findings obtained through interviews conducted with people with disabilities, as well as ingos working with people with disabilities and state authorities in burkina faso. results: evidence suggests that the farther people with disabilities are from the capital, the lesser are their chances of being heard and of being involved in decision-making. however, dpos offer a haven for many, offering people with disabilities solace in meeting other members and finding a sense of belonging in these associations. others give importance to the role of dpos in raising awareness and human rights advocacy. conclusion: finally, the article raises the question as to what the future of dpos in burkina faso might entail. keywords: burkina faso; disability identity; disability movement; disabled people’s organisations; income-generating activities; international non-governmental organisations; socialisation; vie associative; voluntary organisations; urban–rural divide. introduction the importance of collective power and self-organisation has been demonstrated through the achievements of the disability movement in western contexts, and has been documented by disability scholars (e.g. oliver 1996; shakespeare 1996). in burkina faso, however, the disability movement is rather weak in terms of staffing and funding. while it enjoys a certain level of political access and support in the capital, ouagadougou, its reach beyond the city is minimal. politics at the national federation level does nothing to solidify an already weak movement, and support which is presumed to be forthcoming for smaller disabled people’s organisations (dpos) does not seem to exist. rather than a disability ‘movement’ in the western sense, in burkina faso, there is a multitude of grassroots dpos, some of whom are supported by international non-governmental organisations (ingos). further still, the terrain of self-organisation is uneven: while in most rural areas, collective organisation, activism and mobilisation of people with disabilities are still very nascent, in urban areas they have been able to organise through dpos for a number of years. paradoxically, while some people with disabilities are just becoming acquainted with self-organisation and perceive it as an advantageous and effective way to organise, others with greater experience of dpos are becoming increasingly disenchanted with them. in both cases, self-organisation and collective power in burkina faso are not strong. disabled people’s organisations are often ‘reinforced’ by ingos, which are ‘necessary’ for dpos’ functioning, but also keep the same dpos dependent. in what follows, i examine the grassroots level of the disability ‘movement’ in burkina faso, the different attitudes of people with disabilities towards dpos and what motivates them to create and join dpos, and what makes these dpos work or otherwise. the article also looks at the role that dpos play in the lives of people with disabilities and the challenges these dpos are facing today. burkina faso burkina faso, located in west africa, is rated as a low-income country by the world bank (2018a) and is ranked 185th (out of 188) countries on the human development index (united nations development programme 2016). the country is landlocked and highly dependent on agriculture, both of which hinder its economic development. external aid plays a significant role in burkina faso’s development, be it private (mostly nongovernmental organisations [ngos]) or public, which comes largely from france (which colonised burkina faso until 1960) and the european union (lafb1 lafb 2007). burkina faso has 13 regions and 45 provinces. the regions are headed by a governor, while the provinces are headed by a high commissioner (mahieu & yilmaz 2010). the three major urban areas are ouagadougou, bobo-dioulasso and koudougou (howorth 1999; zongo 2004). urbanisation in the large cities in burkina faso is taking place at a great speed, and factors such as overpopulation (which prevents people from improving their living conditions), young educated people desiring ‘a better life’ in the city, droughts and desertification all contribute to the rural exodus characterising burkina faso in recent years (lafb 2007). issues of disability and development in burkina faso have so far been under-researched. statistical information on people with disabilities in burkina faso is hard to come by (handicap international2 [hi] 2005). a 2009 report issued by government entities states that 1.2% of the population of the country live with a disability (ministѐre de l’economie et des finances [ministry of economy and finance], comité national du recensement [national censuses committee] and bureau central du recensement [central censuses office] 2009). this seems to be in stark contrast to the figure of 15% of the world’s population reported by the world bank (2018b) and the world health organization (who 2018). a director at the ministry responsible for people with disabilities in burkina faso (email to author, 01 october 2015) explains this idiosyncrasy: with regard to the figure of 1.2% of people with disabilities, one must note that these figures fall short of the reality on the ground. this could be due to the lack of knowledge on the notion of disability by the researchers, or the unfavourable social representations linked to disability, which often result in people not wanting to declare a disabled relative. there is the tendency to hide them. furthermore, the swedish development cooperation (sida 2012) also reports that the statistics collected by the national institute of statistics and demography in burkina faso (and the ensuing figure of 1.2%) are not dependable, because efforts to collect in-depth statistics have not been impressive, and much of the statistics are collected in the more densely populated urban areas (rather than smaller rural ones). methodology this article is based on research conducted with adults with disabilities in burkina faso from june 2014 to june 2015. over 300 interviews (see table 1) were conducted with people with physical, sensory and intellectual disabilities; grassroots and umbrella dpos3; ingos working in the disability domain; as well as state authorities. apart from the formal, semi-structured interviews, there were countless informal conversations that were indispensable to the research, not only in elucidating otherwise unclear data and providing context, but also in triangulating data obtained from formal interviews.4 table 1: interviews held in burkina faso. the majority of interviews were conducted in three regions: the centre region (the central region that consists mostly of the capital city, ouagadougou), the est region (the eastern region) and the cascades region (the south-westernmost region). these three regions were chosen as being the farthermost regions of the country from east to west, and covered the southern, western, central and eastern regions of burkina faso. furthermore, the est and cascades regions provide a contrast to the urban capital as well as an urban–rural contrast within themselves, while the centre region was also included because of its high density of dpos. research findings disabled people’s organisations statistics on the exact number of dpos in burkina faso are scarce. handicap international (hi 2010) reports that there are approximately 25 grassroots dpos in the est region and approximately 99 in the city of ouagadougou. i use the word ‘approximately’ because these dpos are a mix of organisations. firstly, although they are referred to as organisations5 in general, most of them are associations, and are called so in the individual dpos’ names. secondly, the dpos’ functions, activities and sizes vary considerably. in rural areas, each municipality tends to have its own dpo, which encompasses people with all kinds of disabilities. these municipal dpos are then members of a provincial coordination of dpos, which are, in turn, members of a regional coordination. these regional coordinations are then members of one of the national federations of dpos, the fédération burkinabè des associations pour la promotion des personnes handicapées (febah): burkinabe federation of organisations for the promotion of disabled people or réseau nationale des organisations des personnes handicapées (renoh): national network of disabled people’s organisations. the febah had been the only national federation until 2012, when, following internal disputes, another national federation, the renoh, was created. the latter has a much smaller reach outside the capital and a much smaller membership than the febah. in urban areas such as ouagadougou and bobo-dioulasso (the second largest city), the dpos are more varied. there are dpos whose membership is limited to people with specific disabilities, or women with disabilities. there are others that are more like cooperatives, such as an organisation of artisans with disabilities coming together to produce and sell. many grassroots dpos, especially in ouagadougou, were created more as profit-making organisations, or at least with the aim of generating profit. in the larger urban areas, one also finds dpos that have schools for children with disabilities (and sometimes without disabilities), as well as a few organisations (generally of parents) of children with specific intellectual disabilities, such as autism. another category of dpos – which for clarity’s sake will be referred to here as umbrella dpos – comprise grassroots dpos, usually ones pertaining to the same disability, gender or activity. for example, an umbrella dpo might be made up of grassroots dpos of people with visual disabilities, of sports dpos or of dpos of women with disabilities. these umbrella dpos, generally based in ouagadougou, are also members of the national federations of dpos. this grouping of small dpos into larger umbrella dpos is favoured by ingos who intervene in the disability domain in burkina faso. for example, the international programmes director of an ingo6 explains that donors: ‘will want to focus in one area…. they will not want to fund a physical disability organisation here, a visually impaired organisation here, an auditory impaired… and they will want to focus it in one place that can cover all.’ this ‘decentralisation’ of dpo structures has its positive aspects in that there are grassroots dpos at municipal level, comprising people with disabilities from the villages of that municipality. nonetheless, it also keeps the same people with disabilities from rural areas at bay, because there are usually dpos at higher ‘levels’ representing them. thus, when, for instance, the febah calls people with disabilities for a meeting in ouagadougou, it would generally be the leaders of the regional coordinations who attend. people with disabilities from the farthest rural areas are rarely involved in national events. as can be expected, dpos in urban areas, especially those in ouagadougou, have more access to resources (mainly ingo funding) and opportunities (such as training). they are also the primary beneficiaries of government donations such as wheelchairs and three-wheel motorcycles. rural dpos generally encounter difficulties in all aspects of organisation functioning, including: bringing together members from far flung villages, having low numbers of literate members, having less or no money for functioning and possessing no building where to meet. in both urban and rural areas, however, there are a great number of non-functioning dpos. there are several reasons for this, including the fact that, as will be discussed further on, most dpos are made up of members working on a voluntary basis and thus have other – more immediate – priorities in their lives. another significant factor is that many members join dpos to benefit from aid. in their 2002 annual review, action on disability and development (add) reported that memberships of dpos in burkina faso increased by 21% in that year (albrecht 2006). the proliferation of ingos led to ‘the emergence of a new breed of indigenous ngos’ owing to the fact that ingos need ‘partners through whom to implement their projects, so in some cases they were instrumental in creating local organisations for the purpose’ (sharp 1990:40). many dpos in burkina faso were created at the behest of ingos, who prefer to work with groups, rather than with individual people. this was the case in the est region of the country where an ingo used to work. in the comoé province in the cascades region, where another ingo was intervening, the ingo helped create the provincial coordination made up of dpos in the municipalities of the same province. thus, many dpos today are created in the hope of receiving aid from ingos, as will be discussed shortly. this being said, dpos play beneficial roles in the lives of people with disabilities. the benefits of disabled people’s organisations becker (1980:68) states that ‘[v]oluntary associations are based on common interests… [t]hey provide social nurturance to their members’. she observes that: when the individual is continually reminded of his or her variance from others this increases the level of stress…. stress can best be minimized by playing down the overt differences of the disability and thus its importance. among a tightly knit reference group… the problems of coping with the disability are forgotten or dealt with by joking. (becker 1980:78) while in this example, becker is describing a deaf community, her comments are applicable to groupings of people with other types of disability, as well as to the burkinabe context and the question of the usefulness of dpos to their members. at the centre of people with disabilities in ouagadougou, people with physical disabilities meet up to work, socialise, eat and drink. people with disabilities joke with each other, calling each other ‘hey you, disabled’ and making jokes that they contaminated each other with disability, or that they wanted to become disabled like each other. disabled people’s organisations are a source of identification and socialisation for many people with disabilities, thus also serving as a haven and offering a sense of solidarity: ‘the dpo was created in [19]97… to raise awareness… to form a group, an organisation, so [we] can be heard by the population, by the authorities of the municipality…. the objective of the organisation was first of all to create a setting so that all disabled people can meet up to share ideas, their joys, their worries and their sorrows; because by staying at home, alone, you are isolated: you are sitting around, you don’t go out, you are lost. so the aim was to get disabled people to come out and group them, train them, educate them and integrate them in society.’ (interview with a rural dpo executive committee) from a study she conducted in north america, becker (1980:98) observes that a group of deaf people: defined by the larger society as afflicted, have created a small society that has had an influence throughout life on… their disability…. individuals in this specially created society have used group membership to achieve a nonstigmatized personal identity and normalized social relationships. similarly, in burkina faso, the research participants talk of how they find solidarity in dpos and the comfort of knowing that there are other people who, like them, have a disability and who go through similar experiences. some go as far as to say that they do not feel disabled when they are among other people with disabilities, as the following reveals: ‘[i became a member of the dpo] because there, at least, you are with disabled people: when you see them, you [see] … that you too are a disabled person…. because before … i did not go out, i stayed at home. i put it in my head that only i am disabled. but since i became part of the dpo, i see that it’s not only me who suffers7 from disability, there are many people who suffer from their disability.’ (interview with josiane,8 woman with physical disability, age 319) ‘[disabled people’s sport] … gives me health and… if you are alone, it’s dull, but when you go to disabled people’s sport, you find… that there’s a nice atmosphere, well, you don’t even remember you are disabled, so you feel at ease …’ (interview with salif, man with physical disability, age 29) in burkina faso, where there are people with disabilities who did not know that there are other people with disabilities like them before they joined a dpo, the sense of identity emerging from belonging to a group of people with disabilities takes on an accentuated significance: ‘when i arrived [at noong taaba10]… i was happy, because… when i was alone, i thought i was the only blind person. once i had been there [to noong taaba], there were a lot of things which consoled me: i saw that i was not alone.’ (interview with jean, man with visual disability, age 55) the importance of these smaller ‘created societies’ in the life and identity of a person with disability is further demonstrated by murphy et al.’s (1988) observation that, unlike other stigmatised groups (such as those discriminated against on the basis of racial or religious grounds), most people with disabilities are not brought up by parents with disabilities, nor do they grow up amongst people with disabilities. thus, people with disabilities are not ‘socialised’ in the same way that, for example, a person from a religious minority would have been, and so would not have learnt ‘how to deal with a sometimes hostile world’ (murphy et al. 1988:241). furthermore, many people with disabilities become so through accident or illness and acquire the impairment when they are already adults. yet, even those who are born with a disability, or become disabled when very young, are ‘usually brought up by parents who have no knowledge of the social problems of the disabled’ (murphy et al. 1988:241). referring to institutions such as special schools and rehabilitation centres, murphy et al. (1988:241) observe that: in a way, the physically handicapped have to be ‘resocialized’…. and the school or hospital environments may become so comfortably familiar that they are preferred to home. however, people with disabilities in burkina faso who are adults today rarely had the opportunity to go to schools where they could mingle with other children with disabilities, if they went to school at all. disabled people’s organisations therefore replace these ‘socialisation’ institutions: ‘i have been coming to the centre [of people with disabilities] since 2004. i started coming because i learnt that there is an organisation of people of my kind, that is, people like me, people with a visual disability… and on that day i was very happy because i heard that there were people who were like me, and that i can join the organisation. i was very happy; i was in a hurry, even, to come and meet them.’ (interview with rachid, man with visual disability, age 28) in these examples, dpos become a microcosm of society where people with disabilities experience a non-stigmatised identity and socialise with people with similar (or other) disabilities. disabled people’s organisations can also be a source of awareness raising and advice: ‘thanks to the organisation… [we] learnt different techniques to protect [our]selves… [from the sun]: to wear long sleeves… to apply the [sun protection cream] they give [us] when [we] are in the sun; so, it helps [me] a lot. … [i had gone] to the pharmacies and i couldn’t find [the cream], and it was thanks to the organisation that [i] saw the product and started using it.’ (interview with djibril, man with albinism, age 29) furthermore, dpos have the potential to ‘represent… the space where subaltern, hitherto inaudible and unarticulated views can be expressed’ (tandon 2003:65). disabled people’s organisations are one of the spaces where people with disabilities, whose views are often not heard by the dominant hegemonic society, can be heard. a university student articulates the importance of collective mobilising: ‘when we come to the university here… i think… it’s almost a duty… to take part and participate… in the organisation… to campaign in the organisation…. it’s better to find oneself in a community, in a group: like that we can campaign together and it gives us more strength; we can claim our rights.… as we say, there is strength in unity…. moreover, here we have practically the same realities… the same problems, so why not unite ourselves…?’ (interview with aboubacar, man with visual disability, age 26) nonetheless, as mentioned previously, despite the multitude of dpos in burkina faso, fully-fledged organisations that play a role in advocacy, lobbying or awareness-raising are few and far between. the challenges encountered by disabled people’s organisations one reason for the lack of a cohesive and strong disability movement is that the majority of dpos are voluntary organisations; thus, the members evidently give priority to their personal income-generating activities11: ‘before, every twenty-one days [we] met to talk among [our]selves and all that. but… the president has his own work; and the… [general] secretary… it was her, before, who mobilised the people, and the people used to meet. but now she, too, has gained an [income-generating] activity for herself, so she does not have time anymore to [gather] the people, and so she does not make the effort to bring people together.’ (interview with aida, woman with visual disability, age 36) the major reason for the lack of dpo functioning, however, is explained in the following excerpt: lb12: ‘what do you think is needed in burkina so that the disabled person is able to integrate in society?’ j: ‘there needs to be a change in mentality.’ lb: ‘but how? who is going to change the mentality?’ j: ‘the organisations of disabled people…’ lb: ‘do you think that these organisations are… attaining their goals?’ j: ‘well, attaining their goals is a bit complicated, because… it’s the start of a beginning… and, moreover… the organisations have not understood why one creates an organisation: they [do] not have the organisational spirit.’ (interview with joseph, man with physical disability, age 55) the ‘organisational spirit’, or vie associative, that joseph refers to, is what makes up the life of an organisation: the role and contribution of the members, the functioning of the organisation and its work towards achieving its objectives. this is the significant factor that, according to joseph, many dpos lack, and which leads to numerous problems of self-organisation among people with disabilities. one province high commissioner observes that when people with disabilities come to her, it is always to ‘ask, ask, ask’, but they never show anything that they do. according to her, people with disabilities need to sit down and plan the way forward. disabled people’s organisations, like many other grassroots organisations in burkina faso, have no activities apart from sitting around and waiting for financial support. the high commissioner asserts, however, that: ‘no one has “nothing”. you have to give something in order to receive. if someone gives all the time, he will get tired, but if it’s dynamic, the relationship won’t end… everyone has something to give.’ a similar observation is made by an ingo national director: ‘even to gather for a general assembly, they [dpos] will ask an ngo for the financial means; yet an organisation shouldn’t be like this: [by means of] the membership fees, [and] donations from other people… the organisation should at least be able to meet to discuss its… common interests.’ the director’s comments also relate to how dpos fall into the tendency of depending on external partners for funds, rather than attempting to generate funds internally. this observation touches upon the argument made by kajimbwa (2006) that when ingos implement their own programmes, it is likely that the beneficiary of the ingo will have a decreased sense of ownership and potential to act. meanwhile, the same high commissioner makes a related observation on what is possibly hindering the functioning of dpos: ‘people have associated the organisation with money…. [however,] it’s not money which enables you to live, but good practices which enable the money to stay.’ the high commissioner is talking of the large number of grassroots organisations (including dpos) that are created for the sole aim of receiving aid or to access funding in general, a point that is reiterated by the president of a dpo: ‘[we] have an executive committee: a president, a general secretary, a treasurer, but it doesn’t function, because people have not understood, for a start, the interests of the organisation…. for them, when one says ‘the organisation’, people think that it’s to call them and give them money.’ joining a dpo for economic reasons is not necessarily negative: lb: ‘are you a member of a disabled people’s organisation?’ f: ‘yes…’ lb: ‘which one?’ f: ‘… [the] national federation of artisans… of disabled people…’ lb: ‘and why did you become member of this organisation?’ f: ‘because… since i do hairdressing… i am an artisan too. so, i am a part [of it] because… when you work alone it’s not good, but when you are in a group, it’s better… for example, if there is a call for products or services… and if you can do it, they give you the work.’ (interview with florence, physically disabled woman, age 37) however, florence already has her own income-generating activity, and only joined the organisation to strengthen her work, rather than to simply access funds. furthermore, she later specifies: ‘each one of us works separately’ (interview with florence, physically disabled woman, age 37), a statement that captures one of the challenges that dpos encounter, that is, that many of the participants in this research prefer to work on their own. conversely, ingos generally do not work with individuals, but with organisations, leading to the creation of numerous dpos whose sole existence is to access external partners’ financial aid and support: lb: ‘what was the reason for which you created the organisation?’ j: ‘… the reason for which i created the organisation: … i approached many people who told me “if you have an organisation, we can help you; but if you are on your own, we cannot help you”.’ lb: ‘who said this?’ j: ‘… [ingos]…: if you create an organisation and approach them, if your dossier is good, they will finance you…. so… it’s for this reason that i thought of creating the organisation.’ (interview with jean, man with visual disability, age 55) the expectation for ingos to work with dpos seems to be present from the perspective of both dpos and ingos. for example, one of the reasons for the importance of unity in the dpo movement, according to the national director of an ingo, is attracting partners (such as ingos) to work with them: ‘i think that for dpos, there must be… unity… cohesion, because when we have an organisation that groups together all the dpos… it’s even stronger:… when… there is one structure that coordinates all this, it gives them strength…. even with the partners, when [we] feel that there is one structure… [we] can help [them]; but when it’s [divided] … it’s two, it’s three, each one fighting for their school of thought, it’s very difficult.’ rather than uniting dpos, however, the expectation of being funded by ingos seems to have given rise to the proliferation of dpos. hence, much in the same way that the international aid system has become ‘increasingly dysfunctional’ and ‘has led to a system that is fragmented and duplicative, and places too heavy a burden on aid-receiving countries’ (woods 2008:1218), ingo intervention has precipitated the creation of many dpos in order for these to access foreign funding. this ‘awaiting aid’ phenomenon then creates problems of functioning, as a regional dpo coordinator remarks: ‘there isn’t anyone who has taken the initiative to create [an organisation] and make it function… because… in this region there is the idea that when one creates an organisation, there will be [financial] support. but what if there is no such opportunity? people create and then they wait… there isn’t an organisation which has a clear policy which says ‘we will do this, we will do that.’ the idea of joining or creating a dpo to attract funds subsequently leads to members becoming discouraged over time. numerous dpos comment on the fact that meetings are no longer held because of the fact that the members feel that they are not gaining anything. this is further compounded if the dpo has already worked with an ingo in the past and thus enjoyed financial support for its activities. the loss of these benefits is felt more acutely by the members, who then refuse to attend meetings if there is no financial support: ‘with the partners [ingos], people got used to having food, and so on, when there is a meeting…, so [now] we cannot… organis[e] big meetings, and so on.’ (interview with a regional dpo coordinator) interventions by ingos have conditioned many people with disabilities in burkina faso into expecting certain standards that are not possible after the ingo terminates its collaboration, mostly because dpos do not possess as much financial capacity as ingos. many dpos then cease to function when ingos terminate their funding and collaboration. the phenomenon of grassroots organisations disintegrating once external support ends is not specific to disability. atampugre (1997:62), writing about ingos and grassroots development in burkina faso, comments on: the extent to which groups quickly form in order to take advantage of opportunities in their external environment, disintegrating as soon as that objective has been met. it shows too that credit or financial support does not necessarily facilitate organisational development. on the contrary, it can undermine the ability of rural communities to organise in order to solve their own problems. dependency on external funding thus leads to the inactivity displayed by many dpos in the interviews conducted for this research, as exemplified by the following dpos: s: ‘when we had the money, we went to the villages to raise awareness among the population, for example… the traditional chiefs, the religious chiefs, civil servants… so they support disabled people everywhere…’ lb: ‘when you say “when we had the money”, what does that mean? …’ e: ‘[an ingo]… came to help us with financing: when we had this, we did awareness raising in the villages.’ lb: ‘and now you don’t have the financing of [the ingo]… anymore?’ e: ‘no.’ lb: ‘so how do you do the awareness raising now?’ s: ‘at present we have almost stopped the plan, because we have nothing with which to travel. today, it’s the money that counts: if you don’t have the money… to travel with a bicycle it’s complicated; if you have a motorbike, you can put petrol, if you have money; but if you have nothing, what will you do? without money…’ (interview with a dpo president and general secretary) ‘at that time, apart from the different quarterly meetings… there was nothing that disabled people did to promote… their autonomy. we were quite idle and… were waiting for [a particular ingo]… to come to our rescue.’ (interview with a dpo president) today, the dpo which the latter president is talking about is once again doing nothing, after a period of intervention by two ingos. the dependency of dpos is thus clearly problematic for the long-term sustainability of disability activism and advocacy in burkina faso. apart from the lack of knowledge of organisational functioning, and the related notion of creating and joining a dpo as a means of accessing aid, there is the related problem of misappropriation of funds, which is also a nationwide issue. in the context of dpos, the high commissioner of a province observes that when the organisation does access funds, it is then spent all at once, or simply ‘disappears’, and thus: ‘if you have a tree and keep cutting its branches, the trunk, you will end up with nothing. even the roots will die.’ (interview with province high commissioner) the misappropriation of funds is a problem that pervades many dpos in burkina faso. the point is also made by an ingo national director: ‘they are always waiting… they come to see an ingo, saying “this is our plan of action, we want to do this”. but when they are financed… the problem of governance proves to be a problem: often, we don’t know how the funds were spent.’ this is one of the major reasons that have led many people with disabilities, especially in urban areas, to become disillusioned with collective organisation through dpos: lb: ‘are you a member of a dpo?’ c: ‘no.’ lb: ‘and why not?’ c: ‘… i was, before. but i left.’ lb: ‘why? …’ c: ‘… things weren’t going well, [and] i resigned.’ lb: ‘why? …’ c: ‘things weren’t transparent… there… i prefer staying in my workshop.’ (interview with christian, man with physical disability, age 38) the issue of misappropriation of funds (together with organisational functioning and the reasons underlying dpo creation) is also tightly linked with leadership, and the (lack of) transparency issues that christian mentions. underlying these structural drawbacks are the general hurdles encountered by people with disabilities in burkina faso, one of the major difficulties being the lack of education. the lack of access to schooling for many people with disabilities when they were young resulted in many adults today lacking the writing and reading skills necessary to lead and manage an organisation. this absence is felt more strongly when the dpo is working with ingos, who often require reports and other written material (mawdsley et al. 2002, 2005). this often gives rise to a situation where the dpo leaders are those who possess a certain level of education, but are not necessarily the ones who have the dpo’s and its members’ interests at heart. unfortunately, these leaders tend to form an ‘elite’ group whose members are re-elected in consecutive elections, simply rotating roles from election to election. fatou, a woman with physical disability, brings to life the issue of elite capture and other problems regarding dpo functioning in burkina faso (see box 1).13 box 1: fatou and the two disabled people’s organisations. fatou’s observations on the organisation of women with disabilities highlight not only the mismanagement of the same dpo and its funds, but also the fact that the president, carole, has absolute power over what happens. they also explain why dpo members give up on being active in the organisation when funds are misappropriated, especially when it involves an income-generating activity from which the members should be profiting financially. fatou’s observations also illustrate the leadership problems of another organisation of which she is a member: an organisation of people with physical disabilities, whose current president avoids the executive committee elections so that he remains president for as long as possible. hamidou, the current president, was also the president two terms previously. furthermore, should fatou put herself forward as a candidate for president, the incumbent would make life difficult for her. there are not many other candidates who are eligible, that is, who possess the required level of education. inoussa, whom fatou mentions, is an educated member and possible candidate, but he is busy with other commitments (working in the metal workshop [which belongs to the dpo itself], preferring to dedicate his time to an income-generating activity). finally, fatou is not aware of the dpo meetings taking place, suggesting a lack of communication and information-relaying between dpo members. similarly, roland, a man with physical disability, says that he was not aware that the person accompanying us13 to his (roland’s) home for interviewing is the current dpo president: ‘[we] haven’t made any renewals. to [my] knowledge, there haven’t been any renewals of the executive committee in which [i] participated… [i] was the president and [my] deputy was a visually disabled person…. neither [i] nor [my] deputy… know that there is a [new] president, because [for this to happen] people must be present to say “we are going to elect a new committee, so that one became president, that one became…”’ the fact that many dpos are led by the same people, electoral term after electoral term, and that elections are often not held, is also highlighted by ingos: ‘there are always the same people at the head: there are no general assemblies.’ (interview with an ingo national director) another noteworthy factor playing a role in dpo politics in burkina faso is related to gender. while fatou is a member of both the women’s and the people with physical disabilities’ organisations in the small town where she lives, in more urbanised centres like ouagadougou, the fact that most dpo presidents are male has led some women to break away and create dpos of their own. abigael, the president of a disabled women’s organisation in ouagadougou, says that the organisation’s members used to form part of a larger organisation, but, as ‘women come second to men’, they decided to branch out and form their own dpo. binta, the president of another women’s dpo in ouagadougou, relates a similar story: ‘at first, we had a mixed organisation… [and] we thought… why don’t we, the women, separately… create our own organisation? because, often… in the organisations, women don’t have decision-making roles. moreover, in the [executive] committees, [women] hold posts… which do not have priority: often they are posts relating to women’s issues and such… so, in decision-making… men are in the forefront every time. thus, together we reflected: why not create our own organisation? because… it’s true, disabled people have problems; but… women have more problems than men… we have problems in our own right, so why not… see how we can overcome them?’ when asked to elaborate about the problems faced by women with disabilities, and how they differ to men’s problems, binta continues: ‘already, in our families, there are barriers between us, because, firstly, you have to sensitise the family… if you are accepted, it’s already something. if you are not accepted, this is already a problem. so, together, we have to reflect on all this. and then, we have children. and children are problems: a child always has a father, but… everything falls on the mother. so she has to seek work to… meet her child’s needs.’ furthermore, as the government gives more importance to women’s issues than to disability issues, women with disabilities have also felt the need to create women’s dpos (even if, like fatou, they are still members of other dpos), in order to be more visible. the ex-president of a women’s dpo explains: ‘[we] noticed that now, here in burkina… the associations of women are more listened to. the authorities have put an emphasis on… associations of women. so that’s why [we] decided to… create [our] organisation.’ (interview with samira, physically disabled woman, age 51) gender concerns are not the only reason people branch out into new dpos. rather than coming together into a united disability movement, people with disabilities seem to be separating and following their own paths. adama recounts: ‘[i] was the president of the coordination of disabled people… [and] since… for the moment… the coordination has stopped [functioning]… [i created my own dpo].’ thus, despite all the hurdles discussed thus far, dpos continue to proliferate. nonetheless, the dpos run by binta, abigael and adama are based in ouagadougou, with relatively good access to resources to create and sustain an organisation. women (like people with disabilities in general) who live in the capital generally also have a higher level of education and more opportunities to branch out on their own. furthermore, the constant mushrooming and branching out of dpos seems to be more of an urban phenomenon than a rural one. in rural areas, people with disabilities seem to be at an earlier stage of self-organising, which also means that they are more marginalised in terms of being able to access support and assistance, or to articulate their needs. this can be seen, for example, in two rural municipalities in different provinces (see boxes 2 and 3). box 2: creation of a rural disabled people’s organisation 1. box 3: creation of a rural disabled people’s organisation 2. an additional problem for dpos is that umbrella organisations, which face similar leadership, functioning and dependency obstacles as the smaller dpos, do not provide sufficient support to enable dpo mobilisation. at an umbrella dpo level, there is also the phenomenon of multiple leadership posts, that is, one person being the president of three different umbrella dpos, as was the case at the time the fieldwork was being carried out. meanwhile, the national federation of dpos is riven by politics: lb: ‘can we speak of… a disabled people’s movement in burkina?’ j: ‘it exists, but it functions very weakly…’ lb: ‘when you say it exists, it’s who?’ j: ‘it’s the two structures: renoh and febah…but their actions are not translated on the ground…. the difficulty is the weak engagement of dpos: they have a very weak engagement concerning the implementation of their rights… not to speak of the synergy… between the two organisations…. having two federations… does this help us? i don’t think so.’ (interview with joseph, physically disabled man, age 55) joseph speaks of the two national federations of dpos. the original federation was split into two (febah and renoh), following disagreements. according to joseph, there now needs to be a confederation to join these two federations and bring some unity to the disability movement. the problem, once again, is a problem of leadership: ‘it’s a problem of leadership: with white people, things are clear: you have done your mandate, you leave your place… [for someone else. but here,] some people have finished and don’t want to let go! they modify the statute; they create an executive secretariat which has even more power than the president! (interview with joseph, man with physical disability, age 55)’ ‘i cannot say that the dpos work well…. you know that usually dpos have a problem of leadership…. besides the leadership problem, there is also… the notion of organisation per se: it’s not yet well perceived, because they always put forth the problem of means, of lack of means…. even when you look at dpos which are well structured, there are always difficulties…. when you take the case of febah, you see how it went: there is renoh, you have two federations…. they themselves don’t foster… cohesion…, because it’s always problems of leadership, internal power struggles, low blows.’ (interview with an ingo national director) the proliferation of dpos and their lack of strength, whether they are ruralor urban-based, are major contributing factors, therefore, to the weak disability movement in burkina faso. this is then compounded by the lack of cohesion as well as leadership issues amongst dpos, as commented on by an ingo national director: ‘i think the first thing that disabled people and their organisations should deal with, is the issue of organisation: the dpos in burkina are not organised…. they do not manage to get on with each other…. they do not really have an interest in uniting and… working in the same direction… it’s a question of organisation and also of governance… in the sense that it’s always the same disabled people who are at the head of the same dpos. if i’m not happy here, i go to the other side… if i am not in the head, i leave and create my own… [group]. so we have a lot of organisations which exist. but what do they do? nothing!’ conclusions this article has explored the currents that underlie and influence dpos in burkina faso, their creation, their functioning and the interplay between dpos and ingos. the difficulties encountered by dpos are partly because of interventions by ingos, which render dpos dependent on foreign funding and support. nonetheless, the argument here is not that there is no need for dpos. disabled people’s organisations provide a space where people with disabilities meet, whether or not they have similar disabilities. they provide a space in which comfort and solidarity are provided, and where ideas are exchanged. in addition, there is also a case for strength in numbers, which is important for those most marginalised and rendered invisible in society. although the economic, political and social situation in burkina faso might present difficulties for many burkinabes, people with disabilities need to be recognised in their own right. the dpos provide an important space in which they have the possibility and opportunity to come together and speak out and fight for what is rightfully theirs. the challenge for burkinabe dpos is to become sustainable with minimal support from ingos, and to become organisations that truly serve their members’ needs in working towards the well-being of people with disabilities. in this regard, funding might be more beneficial if it were fed directly from donors to dpos. this would both eliminate the need to fund ingo staff and ensure that funding is used according to the dpos’ needs. while encouraging the disability movement, ingos in burkina faso tend to dominate not only the disability movement but also the functioning of dpos which are weak and remain dependent on the same ingos. this is reminiscent of the observation by drake (1997:644) that: charitable action and the evolution of government social policy has all too frequently reflected the hegemony of ‘nondisabled’ people. drake (1997:644) continues to say that ‘[p]erhaps disabled people’s organisations are now old enough (i.e. strong enough) to counter these kind of risks and may therefore be in a position to use the resources of ‘non-disabled’ allies’. however, as emerges from this research, while some dpos in burkina faso might be ‘old’, they are not united in one strong disability movement. if, then, ingos are to continue working with dpos (something which people with disabilities do not reject), the onus lies with ingos to support dpos in becoming independent and self-sufficient. as drake (1997:644) says, ‘[i]t is difficult to know where the proper balance lies here’. one way of finding a balance might lie in a suggestion made by one of the research participants, that is, of ingos employing people with disabilities themselves in the projects they implement (informal conversation with josiane, woman with physical disability, age 31). in this way, people with disabilities are directly involved in (and at different stages of) projects that affect them. from a study conducted by flower and wirz (2000:177) on european-based ingos and grassroots dpos, they found that while ingos involve dpos in the planning of their services and projects, this is mostly performed through sharing information with them, rather than ‘consulting them, including them in decision-making or supporting action initiated by’ the dpos. thus, as kabzems and chimedza (2002:149) assert, there is a ‘need to include persons with disabilities at all levels and stages of projects’. however, ‘[i]t remains rare for a person with a disability to be on the project payroll, whether in the capacity of consultant, accountant or tea lady’ (kabzems & chimedza 2002:149). such observations, together with those which have been discussed throughout this article, highlight the importance of engaging with the lived experiences and voices of people with disabilities, and striving to involve them in all interventions affecting their lives. such steps would endeavour to render development truly beneficial for people with disabilities in the global south. references albrecht, g.l. 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http://data.worldbank.org/country/burkina-faso. world bank, 2018b, disability inclusion, viewed 20 september 2018, from http://www.worldbank.org/en/topic/disability. world health organization, 2018, disabilities and rehabilitation: world report on disability, viewed 20 september 2018, from http://www.who.int/disabilities/world_report/2011/report/en. zongo, b., 2004, parlons mooré: langue et culture des mossis, [let’s speak mooré: the language and culture of the mossi], l’harmattan, paris. footnotes 1. les amitiés franco-burkinabѐ (the franco-burkinabe friendships). 2. handicap international has since changed its name to humanity & inclusion. 3. the term ‘grassroots’ is here used to differentiate these dpos from umbrella dpos. definitions of these two types of dpos are found in the ‘research findings’ section. 4. information given to the researcher strictly in confidence, however, was not used in this article. 5. they are also referred to as organisations in french (including in burkina faso): organisations des personnes handicapées. 6. the names of organisations have been omitted to ensure anonymity. 7. such terms are ones used by the participants themselves. 8. names of participants have been changed to ensure anonymity. 9. this denotes the age of the interviewee at the time of interview. 10. a centre where blind people used to be trained in furniture weaving. ‘noong taaba’ (in the mooré language, the most commonly spoken language in burkina faso) means ‘we love each other’. 11. these include both paid employment in the formal sector, or income-generating activities in the informal sector. 12. these are the researcher’s initials. 13. the interpreter and the author. abstract introduction notion of discrimination and some discriminatory practices disabilities figures in nigeria religion, culture and superstition beliefs and attitudes about disability and persons with disabilities religious and cultural practices and persons with disabilities conclusion acknowledgements references footnotes about the author(s) edwin etieyibo department of philosophy, school of social sciences, university of the witwatersrand, south africa odirin omiegbe department of educational psychology, college of education, nigeria department of administration and policy studies, delta state university, nigeria citation etieyibo, e. & omiegbe, o., 2016, ‘religion, culture, and discrimination against persons with disabilities in nigeria’, african journal of disability 5(1), a192. http://dx.doi.org/10.4102/ajod.v5i1.192 opinion papers religion, culture, and discrimination against persons with disabilities in nigeria edwin etieyibo, odirin omiegbe received: 28 apr. 2015; accepted: 21 june 2016; published: 31 oct. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is not a lot in the literature on disability in nigeria concerning the role that religion, culture and beliefs play in sustaining discriminatory practices against persons with disabilities. objectives: many of these practices are exclusionary in nature and unfair. they are either embedded in or sustained by religion, culture and beliefs about disability and persons with disabilities. methods: drawing on various resources and research on disability, this paper looks at these practices in respect of these sustaining factors. some of the discriminatory practices that constitute the main focus of the paper are the trafficking and killing of people with mental illness, oculocutaneous albinism and angular kyphosis, raping of women with mental illness and the employment of children with disabilities for alms-begging. results: the examination of these practices lends some significant weight and substance to the social model of disability, which construes disability in the context of oppression and the failure of social environments and structures to adjust to the needs and aspirations of people with disabilities. conclusion: given the unfairness and wrongness of these practices they ought to be deplored. moreover, the nigerian government needs to push through legislation that targets cultural and religious practices which are discriminatory against persons with disabilities as well as undertake effective and appropriate measures aimed at protecting and advancing the interests of persons with disabilities. introduction in nigeria, people with disabilities are subjected to numerous types of discrimination (baba-ochankpa 2010; fatunde 2009).1 this paper highlights some of these discriminatory practices (some of which constitute human rights abuses) and, in so doing, explores the extent that religion and culture are contributory and supporting factors in the discrimination against persons with disabilities. the practices discussed are the trafficking and killing of people with mental illness, oculocutaneous albinism2 and angular kyphosis,3 raping of women with mental illness and the employment of children with disabilities for alms-begging. the conceptual exploration of these practices in the context of religion and culture is important for a number of reasons. firstly, it motivates for the undertaking of some original empirical research on the relationship between religion and culture and these practices. secondly, it helps situate the beliefs and attitudes that people in nigeria hold about disability in the broader context of religion and culture and calls attention not only to the particular beliefs and attitudes but also to the institutions that sustain them. this is particularly important considering a number of scholars have pointed out that an individual’s beliefs about disability constitute foundation blocks upon which that person grounds his or her attitude and behaviour towards people with disabilities (teaching for diversity and social justice 2007; madu & yahaya 2004; fishbien & azen 1975; ozoji 1991; thisday news report 2010). thirdly, it shows the sense in which this conceptualisation of the impact of religion and culture on treatment of people with disabilities rests on the social model of disability, according to which disability is understood in the context of oppression and arises due to the lack of societal standards (social environment and structure) in adaptation to the needs and aspirations of people with disabilities (see hahn 1986:128).4 some of the extant literature with regard to disability and discrimination against persons with disabilities in nigeria discuss particular forms of disability, focusing on physical facets and when they venture into the moral, social and psychological aspects (abang 1988; audu, idris, olisah, sheikh, 2013; olupona 1991; omiegbe 2001; ozoji 1991). missing from this literature and studies are discussions regarding the relationship between religion and culture and discrimination against persons with disabilities in nigeria, which is the focus of this paper. notion of discrimination and some discriminatory practices the term ‘discrimination’ generally refers to separation between things or people based on the recognition and understanding of the difference between one thing and another. in this paper, ‘discrimination’ will be taken to mean the exclusionary practices and the prejudicial treatment of people with disabilities (united kingdom 1995). our focus will not only be on basic exclusionary practices against people with disabilities but also on practices that violate the life and personality of people with disabilities. that is, practices that treat them as instruments or mere things are what we might call severe human rights abuses. disabilities figures in nigeria according to the world health organization (who 2013), more than a billion people, which is about 15% of the world’s population, have some form of disability.5 in nigeria, the 2006 census put the figure of people with disability at 3 253 169. of this figure, the total number of women and children with disabilities are 1 544 418 and 1 002 062, respectively. if we go by this figure, then the total number of people with disabilities is approximately 2.32% of the population (140 431 790), with women and children with disabilities being 1.1 and 0.71%, respectively (federal republic of nigeria official gazette 2009; national population commission 2010). these figures may greatly underestimate the actual number and prevalence of disability in nigeria. if we take into account the who estimate of 15% of any given population having some form of disability or even the point made by mba (1977) and abang (1991) regarding the difficulties in achieving a reliable census for those with disabilities in nigeria, then the total figure of people with disabilities could be around 28 million, given nigeria’s current estimated population of 188 million. religion, culture and superstition the term ‘culture‘ has various meanings; however, for the purposes of this paper, it will be taken to mean a set of shared attitudes, beliefs, values, goals and practices that characterises an institution, an organisation or a group (uwagie-ero, iseye & omiegbe 1998). culture is shared and passed from parents to children or from one generation to another (eboh & ukpong 1995). ‘religion’ can be said to be part of culture and may be defined as a belief in the existence of a deity or a supernatural power, a being that created and controls the universe and who is worshipped on the basis of such belief. ‘superstition’ can be taken to mean a belief or way of behaving that is based on fear of the unknown or the belief that certain events or things will bring good or bad luck (merriam-webster’s collegiate dictionary 2003:1255). this understanding of ‘superstition’ takes superstition as an aspect of culture. beliefs and attitudes about disability and persons with disabilities in the previous section, we identified ‘belief’ as an aspect of culture. ‘belief’ can be defined as the affirmation or acceptance of a fact, or an opinion accepted as real or true. that is, as ‘the attitude we have, roughly, whenever we take something to be the case or regard it as true’ (schwitzgebel 2006). a number of beliefs in respect of disability have been isolated in the literature on disability in nigeria. abosi and ozoji (1985), for example, note that beliefs about disability are attributable to different factors such as witchcraft, sex, god, the supernatural and juju.6 according to them, these beliefs are generally taken to be the various causes of disabilities. another aspect of disability beliefs is the one identified by desta: this is the belief that disability is a curse and people with disabilities are hopeless (1995). okafor (2003) has also recognised another aspect of disability beliefs. he notes that ‘some local ancient mythology has it that people with disabilities are social outcasts serving retribution for offences of their forefathers’. munyi (2012), omiegbe (1998, 2001) and abang (1988) have also highlighted similar beliefs about disability in other parts of nigeria as well as in the african context. according to abang, many people believe that persons with disabilities are not only inferior to those without disabilities but can also be used for social and economic benefits. that is, they lack characteristics that make them full humans and can be used in sacrifices in order to bring wealth or good luck. religious and cultural practices and persons with disabilities in the following sections, we will discuss some discriminatory practices against persons with disabilities in the context of religion and culture. the practices include the trafficking and killing of persons with mental illness, people with oculocutaneous albinism and angular kyphosis, raping of women with mental illness and the use of children with disabilities for alms-begging. trafficking and killing of persons with mental illness and raping of women with mental illness people with mental illness are killed as part of rituals, practices that flow from various beliefs that people hold about disability. many who hold negative beliefs about persons with mental illness claim that their hands are unclean (omiegbe 1998, 2001). in some communities, it is believed that such persons have committed an abomination, that is, violated the tradition of the communities. in other cases, a mentally ill person is simply labelled as a witch and subsequently burnt to death (etieyibo 2013; oko 2003; omiegbe 2001). this was the case of a middle-aged woman with mental illness in benin city, edo state, who was burnt to death by a crowd because of the belief that she was responsible for the various problems facing the community (houreld 2009; mcveigh 2007; oko 2003; purefoy 2010b). women with mental illness are also victims of rape in nigeria. many are homeless and are often seen on the streets in major cities. according to dian blair, the head of amaudo itumbauzo, an international non-governmental organisation working with people with mental illness living in poverty in nigeria, the sexual abuse of women with mental illness ‘is the greatest assault on the rights of female psychiatric patients’ (eze 2005). in her keynote address at the un human rights day in abakaliki, ebonyi state, blair noted that there are ritual dimensions to the sexual abuse of many women with mental illness and many of them are raped because of the belief that having intimacy with them could bring wealth or prolong an individual’s life. she further noted that this is unfortunate because the results ‘are the legion of born abandoned children on the streets, who turn out to utterly depend on passers-by for food’. trafficking and killing of people with oculocutaneous albinism and angular kyphosis people with oculocutaneous albinism are broadly discriminated in nigeria. sometimes they are isolated, and at other times they are trafficked and killed (oko 2003; okoro 1975). according to shehu shagari, former president of nigeria, discrimination against people with albinism in nigeria is endemic and much of the discrimination ‘suffered by people with albinism can be traced to ignorance on the part of the general public’ (el-kurebe 2010).7 because many people with albinism are targeted for ritual killings, most live in hiding (anumihe 2008; mcveigh 2007; nigerian tribune news report 2011; oji 2010; sky news report 2008). the killing of people with albinism for rituals is fuelled by the belief that their body parts could be used for portions that will make one wealthy or prolong one’s life (anumihe 2008; oji 2010). two cases came to light recently in south-south nigeria. in ugbogui village, a remote farm settlement in edo state of nigeria, a person with albinism was beheaded while working in the farm. similarly, in abraka urhuoka quarters in abraka community in delta state, another person was killed while working in his farm. when he was found, some parts of his body were missing (nigerian tribune news report 2011). people with angular kyphosis are mostly killed for rituals (omiegbe 2001). there are reports in the local media which suggest that the trafficking of people with this condition is not uncommon.8 in 2002, the nigeria police arrested a man in ikot-akpan abia, akwa-ibom state, who traded mostly in parts of people with angular kyphosis and had been in the business for more than a decade. in his confession, he claimed that he sold the parts to herbalists and medicine practitioners for rituals and that kidnapping of people with angular kyphosis is widespread.9 religion and culture and the trafficking, killing and raping of persons with disabilities the discussion on the trafficking and killing of people with mental illness, oculocutaneous albinism and angular kyphosis, and raping of women with mental illness highlights that these practices are done as part of rituals. according to reports in some nigerian newspapers, a number of missing persons (many of which include persons with disabilities) in various cities and communities in nigeria are kidnapped, trafficked and killed for rituals (next.com news report 2009). in one report presented by odejobi (2010), individuals who were fortunate to escape from their kidnappers recounted stories of how people that were kidnapped were killed for ritual purposes. such ritual killings have either a personal or a communal dimension [i.e. done in order to cleanse the community from some sin or evil claimed to have been committed by people with disabilities or other community members (nigerian tribune news report 2011)]. given this common knowledge, persons with disabilities for the most part live, eat and sleep in fear (odejobi 2010). in support of these reports about the killing of people with disabilities, emmanuel ojukwu, the public relations officer for the nigeria police force, in an interview with the news agency of nigeria made the point that many kidnapping cases in nigeria result in the dismemberment of bodies for rituals (next.com news report 2009). employing children with disabilities in alms-begging in nigeria as in many other parts of africa, parental authority is respected and highly esteemed. a child that resents his or her parents or parental authority in general is not only criticised but also severely punished. such punishment sometimes includes being spanked, deprived of some necessities, locked up in a room and grounded for days or weeks. because of the authority that parents have over children and the cultural value placed on respect for such authority, it is easy for parents of children with disabilities to send them out onto the streets to beg for alms (omiegbe 1995). part of the appeal in using children with disabilities in this way is the thought that the sight of such children is quite likely to evoke a sense of sympathy from members of the society, especially from those that take alms-giving as an obligation. parents or guardians of children with disabilities, who send their children out for alms-begging, compare what they do with parents or guardians that send out their children as street traders. children with disabilities who refuse to beg are usually threatened with beating or refused food. there are cases where the punishment for refusal is more severe, for example, chasing the child with disabilities away from home. in order not to suffer this fate, children usually accede to the wish of their parents. by and large, it could be surmised that children with disabilities obey their parents because of fear of being punished (omiegbe 1995). religion and culture and employing children with disabilities in alms-begging many parents who send their children with disabilities to beg for alms do so for economic reasons. some of these ideas have been explored by omiegbe (1995). there are also cultural and religious aspects to the practice of using children with disabilities for alms-begging. dunapo (2002) notes that alms-begging in general has religious and cultural dimensions. he further states: ‘begging is also a human problem involving not only the disabled persons but also refugees from war ravaged countries. it has religious and cultural connotations [emphasis added].’ the religious and cultural aspects to alms-begging and the use of children (with or without) disabilities to beg for alms can be seen from the age-old almajiri system, which is an ancient tradition and cultural practice. the almajiri is an aspect of the northern nigerian islamic education system, that is, a ‘semi-formal non-secular education in which children between the ages of 4 and 18 are assigned to wandering islamic teachers usually referred to as malams’ to learn the koran and also to acquire some form of islamic knowledge (yusha’u, tsafe, babangida & lawal, 2013:127). once in the schools, and often hundreds of miles away from their families, they receive little education and money and, thus, generally have to beg to survive. as purefoy (2010a) notes, these children are frequently seen flooding the streets with small bowls; ‘across the north, an afternoon break in classes sends the children flooding into the streets with small bowls to search for scraps’. yakasi and amupitan (particularly amupitan) have discussed how religion and culture in the area of the almajiri system is related to alms-begging. yakasai (1990), for example, notes that the islamic religion encourages the practice of alms-begging and some of the attempts at justifying the practice are unconvincing. like yakasi, amupitan (2001) claims that the almajiri system promotes begging. he argues that the reason begging is lucrative in damaturu, the capital of yobe state (northern nigeria), is that it has the almajiri culture which encourages begging. he notes: the almajiri system is very widespread in yobe state as in most states of the north which is believed to be a product of the koranic system into which some parents dump their male children and forget them there. the poor little brats are abandoned to the care of the koranic teacher who is not earning any salary. the poor teacher simply engages the pupils in part-time begging, the proceeds from which is used to pay the teacher and feed the pupils. in most cases the almajiri (the koranic pupil) does not know his parents, his home or any of his relations. he is entirely on his own and ends up on graduation a beggar. one may conclude that the islamic practice of almajiri sanctions begging, as do some passages in the koran.10 accordingly, it is no wonder that it is common to see children with disabilities in many cities in nigeria being used by their parents or guardians in alms-begging. given the koranic/islamic basis of alms-giving and alms-begging, adult persons with disabilities who are muslims and who see alms-begging as some ‘religious duty’ do not waver going into the streets themselves to beg or send their children with disabilities onto the streets to solicit for alms. simply put, the islamic religion and the almajiri culture sustain the practice of using children with disabilities to beg for alms – a practice that is discriminatory against children with disabilities. this claim can be teased out in two ways. firstly, the islamic religion and the almajiri culture sustain the practice of using children with disabilities to beg for alms in the context of the islamic injunction and the almajiri system where alms-begging is justified and legitimised. secondly, the use of children with disabilities for alms-begging invokes certain psychological responses in people. that is, people who are moved by the condition of children with disabilities feel a compulsion to help by giving them material and financial resources. these benefits that come to both children with disabilities and their parents come about only because alms-begging and the practice of using children with disabilities to beg for alms are sustained by the islamic religion and the almajiri culture. if the above reports and evidence are accurate, then they highlight the point about the role of culture in discriminatory practices against persons with disabilities, which seems consistent with oliver’s variant of the social model of disability. in his seminal work, oliver seeks to provide conclusive evidence that disability ‘as a category can only be understood within a framework which suggests that it is culturally produced and socially structured’ (oliver 1990:22). the point is that the discriminatory practices against persons with disabilities are sustained by culture and in doing so reinforce the dominant perspectives regarding disability. therefore, it is not only the case that people with disabilities are killed on the basis of disability beliefs (e.g. superstition), but these killings are also ritualised; they are ritualised because they arise from a particular culture embedded in a particular worldview. the killings of people with disabilities in nigeria can be considered aspects of cultural practices or culture. perpetrators pick out such persons and kill them because they either believe that doing so would make them rich and successful or believe it as part of some ceremony rituals. this is the point that we made above about the communal dimension of ritual killings and is in line with abang’s remark that people with disabilities are targeted for their social and economic benefits, that is, killed for their utility value (1988). with regard to religion, olupona (1991) has noted that various ritual practices carried out in many communities across nigeria are grounded in some form of african traditional religion (atr). this claim is important considering that disability beliefs and the attitudes towards people with disabilities may not explicitly be sanctioned by christianity and islam – the two dominant religions in nigeria. but then one may ask if many nigerians are professed christians and muslims, how come they have some deep connection and attachment to practices and activities that are wedded to atr? oyebode’s (2009) answer to this question is that it has to do with the strong influence exerted by atr, and this influence is seen in the attitudes of nigerians towards oaths administered via the holy bible and the holy koran and the atr. the point to be taken from olupona and oyebode is that even though western education is a socialising agency, as amposah (1975) has noted, the fact that the atr still holds some attraction among many may have to do with dzobo’s (1974) point that the individual’s being seems connected to him identifying with the fortunes of his group and [feeling] deeply rooted in the corporate being of his society. the point is that many nigerians that are still wedded to the atr are goaded by beliefs embedded in this religion to engage in ritual killings of persons with disabilities. one can conclude that both religion and culture exert powerful influence on many nigerians not only when it comes to negative attitudes towards people with disabilities but also in their engagement in highly discriminatory practices against them. conclusion our discussion has highlighted that religion and culture promote certain beliefs and attitudes about disability and people with disabilities that lead to discriminatory practices. that is, they are sustaining factors in discrimination against people with disabilities. these practices should be wholeheartedly denounced because they result in the invasion of the dignity, personhood and life of persons with disabilities. they trespass the inalienability of human rights, in general, and the rights of persons with disabilities, in particular, as recognised by human rights conventions and laws (united nations, convention on the rights of persons with disabilities). to ensure that persons with disabilities are treated fairly and to combat stereotypes, prejudices and harmful practices relating to persons with disabilities, the nigerian government would have to push through legislation that can target cultural and religious practices which are discriminatory against persons with disabilities. in addition, it has to undertake effective and appropriate measures aimed at raising awareness throughout the society about persons with disabilities. acknowledgements competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions e.e. made conceptual contributions, reviewed some of the literature as well as teased the overarching argument of the paper. o.o. was responsible for the statistical part of the paper in addition to reviewing some of the literature. references abang, t.b., 1988, ‘disablement, disability and the nigerian society’, disability, handicap & society 3(1), 71–77. abang, 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1963:15–30: see also teaching for diversity and social justice 2007). as barton has noted, throughout antiquity people with disabilities have been subjected to a multiplicity of oppressive social attitudes, which have included ‘horror, fear, anxiety, hostility, distrust, pity, over-protection and patronizing behavior’ (barton 1993:8). according to barnes (1991), the real concern of disability, therefore, has to do with these pejorative attitudes combined with particular social contexts, namely, an inhospitable physical environment (e.g. inaccessible buildings and unusable transport systems). 2. oculocutaneous albinism is a group of inherited disorders of melanin biosynthesis or a congenital disorder which is characterised by a generalised reduction in pigmentation (called melanin) of the skin, hair and eyes (christianson, howson & modell 2006; grønskov, ek & brondum-nielsen 2007; okoro 1975; winship 2003). 3. angular kyphosis is a common condition of a curvature of the upper spine and can be the result of either degenerative disease (such as arthritis) or developmental problems (omiegbe 2001). 4. see also charlton (1998:27) and abberley (1987:163). 5. for the classification of disability and health see world health organization (2011). 6. juju refers to charms, amulets and spells used in some parts of west africa as a part of witchcraft or to affect others or events, negatively or positively. 7. shagari made this remark during the 4th national conference on albinism in sokoto state on 12 july 2010. 8. some relatively recent examples of trafficking of people with angular kyphosis include the following: (1) the killing of a famous herbalist, a male angular kyphosis sufferer, in benin city, edo state, nigeria (omiegbe 2009); (2) the killing of a 22-year-old female angular kyphosis sufferer, taibat oseni, in osun state, which implicated a nigerian senator. according to the osun state police command, oseni was kidnapped from her home and then taken to a 15-year-old abandoned building owned by a senator where she was killed and her protrusion removed (dike 2009; kolawole 2009). 9. according to him, a person with angular kyphosis attracts the sum of n400 000 (us$2100) (nkanga 2002). 10. see koran 2:273 and koran 42:27. abstract introduction the situation in uganda motivation for this study method findings and discussion conclusion acknowledgements references about the author(s) nikola seymour centre for rehabilitation studies, stellenbosch university, stellenbosch, south africa martha geiger centre for rehabilitation studies, stellenbosch university, stellenbosch, south africa elsje scheffler centre for rehabilitation studies, stellenbosch university, stellenbosch, south africa citation seymour, n., geiger, m. & scheffler, e., 2019, ‘community-based rehabilitation workers’ perspectives of wheelchair provision in uganda: a qualitative study’, african journal of disability 8(0), a432. https://doi.org/10.4102/ajod.v8i0.432 original research community-based rehabilitation workers’ perspectives of wheelchair provision in uganda: a qualitative study nikola seymour, martha geiger, elsje scheffler received: 09 sept. 2017; accepted: 03 oct. 2018; published: 24 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the challenges of wheelchair provision and use in less resourced settings are the focus of global efforts to enhance wheelchair service delivery. the shortage of professional wheelchair service providers in these settings necessitates the collaboration of multiple stakeholders, including community-based rehabilitation (cbr) workers, whose role needs to be further understood. objectives: the aim of this study was to determine what cbr workers in three areas of uganda perceived as (1) the challenges with wheelchair provision and use, (2) the factors contributing to these challenges, (3) the role they themselves can potentially play and (4) what facilitators they need to achieve this. method: this qualitative study in the transformative paradigm comprised focus group discussions to gather perceptions from 21 cbr workers in three areas of uganda, each with an operational wheelchair service, participant observations and field notes. thematic analysis of data was implemented. results: community-based rehabilitation workers’ perceptions of challenges were similar while perceived causes of challenges differed as influenced by location, historical and current wheelchair availability and the cbr workers’ roles. their main responsibilities included assistance in overcoming barriers to access the service, transfer of skills and knowledge related to wheelchairs, follow-up of users for wheelchair-related problem-solving, and user and community empowerment. conclusion: community-based rehabilitation workers can contribute in various ways to wheelchair service delivery and inclusion of wheelchair users; however, their capabilities are not consistently applied. considering the diversity of contextual challenges, cbr workers’ range of responsive approaches, knowledge of networks and ability to work in the community make their input valuable. however, to optimise their contribution, specific planning for their training and financial needs and effective engagement in the wheelchair services delivery system are essential. keywords: wheelchairs; less resourced settings; community-based rehabilitation; wheelchair service provision; service steps; uganda; empowerment; inclusion; assistive device. introduction the right to personal mobility is mandated by the united nations convention on the rights of persons with disability (uncrpd) (un 2006). an appropriate wheelchair and related services, information and training are crucial for many persons with disabilities (pwd) and can enhance potential to achieve personal health, development and participation in society (un 2006; world health organization [who] 2008). the who guidelines on the provision of manual wheelchairs in less resourced settings recommend that a wheelchair should meet the individual user’s personal and contextual needs and should be provided by suitably trained service providers within a comprehensive service system (who 2008). wheelchair service delivery includes eight sequential service steps described in table 1 (who 2008). training of service personnel in the delivery of these steps is required and can have a positive impact on user satisfaction (borg, larsson & östergren 2011a; toro, eke & pearlman 2016; un 2006; visagie, duffield & unger 2015a). global resources, such as the who wheelchair service training packages (wstp), are available to equip service providers and managers in appropriate provision (who 2012, 2015). table 1: service delivery steps. the world disability report estimates that, in lowand middle-income countries, only 5% – 15% of those needing a wheelchair have what they need (who 2011b). while the reasons are multifaceted, these include the lack of appropriately trained personnel (borg et al. 2011a; bray et al. 2014; who 2011b). physiotherapists, occupational therapists and orthotists or prosthetists are the most relevant rehabilitation professionals for service delivery, but in many resource-constrained settings they are in short supply (grut et al. 2012; mannan, maclachlan & mcauliffe 2012; wegner & rhoda 2015). while who recommends other health workers including rehabilitation technicians and community-based rehabilitation (cbr) workers as key stakeholders, scarce training opportunities prevent the appropriate development of skills (who 2011a). consequently, services are commonly centralised and limited to cities and large towns, impeding access for people from remote and rural communities (who 2011a). furthermore, financial constraints, inaccessible transport and lack of service information together with widespread attitudinal barriers limit the uptake of available services and further disadvantage already marginalised groups (booyens, van pletzen & lorenzo 2015; grut et al. 2012; wegner & rhoda 2015). additionally, centralised services may not be responsive to specific contextual barriers, which affect use of the wheelchair, to ensure that the wheelchair can make a real difference (borg et al. 2011a; magnusson et al. 2013; smith, sakakibara & miller 2014; visagie et al. 2015a). community-based rehabilitation has been recommended as a strategy to address some of these challenges: stakeholders at the 2006 international consensus conference on wheelchairs pointed out that ‘unless cbr is involved in wheelchair provision, we will not reach very far’ (ispo 2006:23); indeed, many pwd would not be reached by the available wheelchair services. community-based rehabilitation, implemented jointly by pwd themselves, community members and service providers, aims to increase inclusion and participation of pwd from a community development and social justice perspective (nganwa, batesaki & mallya 2013; who 2010; wickenden et al. 2012). the cbr approach includes workers or volunteers with a range of titles (here collectively termed cbr workers), providing services and facilitating social inclusion (booyens et al. 2015; chappell & johannsmeier 2009; deepak et al. 2011; international labour organization 2004). while provision of assistive devices is included under the health domain of the cbr matrix, access to and use of an appropriate device impacts every domain (heinicke-motshe 2013; nganwa et al. 2013; who 2010). the combination of cbr workers’ knowledge of local conditions and needs, their availability and accessibility to pwd and their diverse strategies to promote social inclusion together strengthens their potential contribution towards wheelchair service delivery systems and wheelchair use. identifying and referring those in need of services and encouraging new wheelchair users to participate show how they can be equally valuable to pwd and other wheelchair sector stakeholders (chappell & johannsmeier 2009; deepak et al. 2014; grut et al. 2012). also highlighting the potential role of cbr, borg, lindstrom and larsson (2011b) emphasise the need to carry out research and plan the implementation of strategies, which focus on the various components of provision to ensure contextually appropriate, effective and equitable solutions. despite having an appropriate wheelchair, contextual barriers (such as environmental accessibility, transport, cultural beliefs, negative attitudes and stereotypical assumptions) can further lead to exclusion or discrimination hindering pwd from accessing or using their wheelchairs in a meaningful way (banda-chalwe, nitz & de jonge 2014; borg et al. 2012; smith et al. 2014). the practice of cbr varies greatly because of its inherent focus on individual needs, the varied organisations initiating cbr programmes and variants of training for cbr workers in different organisations and communities (chappell & johannsmeier 2009; deepak et al. 2011; wickenden et al. 2012). nonetheless, a study including 107 cbr workers across seven countries showed that a slight majority of 51% identified ‘technical aids and appliances’ as a major training need (deepak et al. 2011). the situation in uganda an overview of key events in the history of wheelchair provision in uganda is presented in table 2. table 2: overview of key events in the wheelchair provision in uganda. since 1967 when local production of wheelchairs was initiated in uganda, challenges in the wheelchair sector have included a lack of awareness, insufficient skills and absence of clear roles and responsibilities of stakeholders (øderud et al. 2004). the establishment of a national wheelchair task force and subsequent launch of the ‘code of practice for design, production, supply and distribution of wheelchairs and tricycles’ demonstrate the efforts to address this (uganda national bureau of standard [unbs] 2015). updated and relaunched in october 2015, the code of practice lists medical officers, occupational therapists, orthopaedic officers, orthopaedic surgeons, orthopaedic technologists, physiotherapists and wheelchair technologists with appropriate training as potential service providers. community-based rehabilitation activities are present in uganda and include the initiation of cbr training through the community based rehabilitation alliance (combra) in 1994. community based rehabilitation alliance was involved in developing the wheelchair standards and reference to community involvement in wheelchair service relates to referral and maintenance at community level. despite these positive steps, substantial gaps remain (abimanyi-ochom & mannan 2014). motivation for this study uganda has adopted a cbr approach and the who wheelchair guidelines (unbs 2015), and together with international organisations, such as motivation charitable trust, have taken steps towards strengthening the wheelchair provision sector by training service providers and developing services. feedback from users, cbr workers and service providers indicates both progress and ongoing challenges. it is crucial to understand the community perspective and include the voice of cbr workers in creating solutions to the complexities and ensuring long-term change (owusu-ansah & mji 2013). the literature specifically exploring the role of cbr workers in wheelchair provision was found to be limited. by exploring this further from the perspectives of cbr workers themselves, the first author, employed by motivation charitable trust, hoped to develop a better understanding of the situation and gather suggestions to improve practice. method research questions what do cbr workers in three areas of uganda, each with a wheelchair service, perceive as the challenges with wheelchair provision and use in their communities? how do they think they can assist to overcome these and what facilitators are needed to achieve this? objectives were to determine what cbr workers perceive as: the challenges with wheelchair provision and use the factors contributing to these challenges the role they can play the facilitators needed to achieve this. study design a descriptive, qualitative design was applied, with participative aspects as recommended when carrying out research including cbr workers (deepak et al. 2014; mannan et al. 2012; wickenden et al. 2012). principles of the transformative paradigm, with its philosophical assumptions of addressing social change and starting by gathering community perspectives, enabled space for sharing diverse observations and solutions and created opportunity for learning by both the cbr workers and the researcher (mertens 2007). study setting the three areas of uganda (figure 1) were purposively chosen, as each had a comprehensive wheelchair service with service steps according to the who wheelchair guidelines implemented by personnel trained through the wstp and a cbr programme active in the same target areas as the wheelchair services. the areas were: kisubi, an area both rural and urban, in wakiso district, 40 km north of the capital, kampala. kasese, a rural and remote mountainous area in the west. gulu, a predominantly rural area in the north. figure 1: the three areas in uganda from which participants were recruited: kisubi in the central region (bottom right), kasese in the eastern region (left) and gulu in the northern region (top). the situation in the three areas differed making this a diverse sample. wheelchair services, all active less than 18 months, were delivered by a non-government hospital, mission hospital and a government district hospital. personnel from the occupational therapy, physiotherapy and/or orthopaedic technology departments had been trained and were providing the service alongside other professional functions. the cbr programmes identified per area were operated by three different types of organisations including a department in the same hospital as the wheelchair service, a non-governmental organisation (ngo) working with parents of children with disabilities and disabled people’s organisation. table 3 summarises the geography and details of the wheelchair services and cbr programmes in each study setting. table 3: summarised overview of geography, wheelchair services and community-based rehabilitation programmes per study setting. study population, sampling and participants purposive sampling was used to identify three community-based organisations (cbos) who were known by the researcher to be working with the wheelchair services, and then cbr workers working for, or in collaboration with, these cbos. the inclusion criteria required participants to have a role supporting wheelchair users, to have at least 6 months’ experience working in the particular geographical area and to have worked with a minimum of 10 beneficiaries of the new wheelchair service. job titles varied, and for the purposes of this article, ‘cbr workers’ was used. to avoid influence of power that researcher or cbo manager bias could have caused, each cbo manager appointed a focal person who, with written information on the purpose of the study, inclusion criteria and ethical considerations, assisted with initial selection and recruitment (mertens 2007). focal persons generated a list of up to eight candidates and final selection was agreed jointly with the researcher, on the basis of the inclusion criteria. the final participant group (table 4) included one additional person in the west who unexpectedly arrived, out of interest, on the day of data collection. the group in the north was smaller than anticipated because of two ‘no shows’ on the day as a result of challenges with distance and logistics. the final 21 participants across the three focus groups included 11 women, 9 people with disabilities, 2 of whom were wheelchair users. selections by the focal persons, which were guided by the selection criteria, resulted in participants with a wide range of training and experience, adding to the richness of the data. table 4: summary of participant profiles. data collection in each of the three research sites (in the central area, in the west and finally in the north), data collection was done in two steps in march 2015. thus, all participants first completed a structured self-administered demographic and general information questionnaire in english or in their local language (compiled in table 3 above). this was followed by a focus group discussion (fgd) led by the researcher and researcher’s assistant. four key questions aimed at participatory problem identification and solution finding were displayed on a flip chart and posed to the group: what are the challenges for people who need or use wheelchairs in your community? what are the reasons for these challenges? what can you do about it? what do you need? such an approach is often used in community development (chambers 1994; 2007; 2010; freire 1970) and cbr evaluation (hope & timmel 1995) and assisted here in creating a picture of the context, including the nuances of multifaceted situations and, moreover, involving participants in identifying their own solutions (freire 1970; owusu-ansah & mji 2013). the majority of participants contributed in english with others supported by a translator. prompts were provided by the researcher during the fgds to ensure all participants had equal opportunity to share. in concluding each fgd, participants were asked what they would do with their recommendations, to encourage ownership of the process. field notes and the researcher’s reflective journal entries captured observations and thoughts before, during and after each fgd and were also included in analysis, as also described by birks, chapman and francis (2008). data analysis data sets from each source, named area 1 (central), area 2 (west) and area 3 (north), included questionnaire responses translated as needed and transferred to a password protected excel sheet, fgds recorded verbatim and the english contributions transcribed, flip charts, field notes and reflective journal entries. six phases of thematic analysis as described by braun and clarke (2006:87) were applied firstly to each area’s specific focus group and then across areas. four main themes (reflecting the four questions which in turn reflected the four objectives) were identified: theme one comprised perceived challenges, theme two contributing factors, theme three the possible cbr workers’ role and theme four facilitators to achieve this. the flow of dialogue during the fgds meant information was not entirely presented in a linear manner according to the four questions but rather interconnected, for example a particular challenge was followed by contributing factors and the cbr role in overcoming it, before moving on to discussing another challenge. additionally, some challenges were also presented as factors leading to further challenges resulting in one point being coded twice and the decision by the authors to combine theme one and two in the results and findings section of this article. inductive analysis revealed subthemes for area 1. subsequently, analysis of areas 2 and 3 was deductive and, in keeping with flexibility of applied learning in the transformative paradigm, open to new subthemes emerging (mertens 2007). coding indicated the area, the theme and the data source, that is, 1 (area 1)/2 (contributing factor)/fgd11 (page 11 of the fgd transcript). once themes and subthemes were identified, the transcriptions were confirmed against the electronically captured flip chart notes and combined with the researcher’s field notes and journal observations into one comprehensive document for each focus group. finally, a consolidated table was prepared to capture the themes and subthemes from the three data sources (areas 1, 2 and 3) to expose similarities and differences through data triangulation from the three data sources (carter et al. 2014). demographic data from the excel sheet were used to further enrich analysis such as relating their training on wheelchair provision to their responses on training needs. trustworthiness qualitative research is by nature idiographic but gathers rich detail of valuable experiences and can enhance learning of complex environments (carter, lubinsky & domholdt 2011:158). no incentives were offered, increasing the possibility that participants had an interest in the topic and were honest with their contributions, especially the groups from west and north, which were held on non-work days. member checking and a clear audit trail enhanced credibility and transferability, respectively. although generalising findings to other geographical areas is not the purpose of qualitative research, triangulation of data from the three groups enhanced both credibility and transferability (mack et al. 2011). ethical considerations the south african medical research council (mrc) guidelines (mrc 2004) were applied and permissions were obtained from the stellenbosch university health research ethics committee (s14/10/210) and the uganda national council for science and technology. all participants provided written informed consent, either in english or in the applicable regional language or dialect. the researcher was mindful of possible interventionist-researcher bias (o’leary 2017); so, each organisation and study participants were informed that the study was independent of the researcher’s organisation, and open and honest contributions would enrich the data gathered but no other benefit would be derived from participation. findings and discussion the findings and the discussion are integrated here to reduce duplication. a tabulated overview of the relationship between the study objectives, the guiding questions, the resultant themes and subthemes, as well as the frameworks used to interpret them is presented in table 5. following this, in response to the four study objectives, the four themes will be discussed in pairs, that is, the challenges identified and their contributing factors (themes 1 and 2), followed by the potential roles of cbr workers and facilitators needed to achieve these (themes 3 and 4). table 5: tabulated overview of the link between the objectives, the guiding questions, frameworks applied (for analysis), themes and subthemes. themes 1 and 2: challenges and their contributing factors in response to objectives 1 and 2, the international classification of functioning, disability and health (icf) (who 2001) was used to analyse responses contributing to theme 1 (perceived challenges, including activity limitations and participation restrictions) and theme 2 (contributing or contextual factors). mobility limitations (international classification of functioning, disability and health: mobility) the cbr workers across the three groups indicated that the number of people needing wheelchairs was high. in the west and north, both areas with large rural communities, the need was estimated to be far greater than officially known. west: ‘those people who don’t reach into the community think there’s not many disabled persons. most of these parents hide their children. we as cbr workers know about these people because we’ve been deep in the village.’ additional reasons for people lacking the necessary mobility device included lack of awareness of the service and policy literacy regarding their rights, low service capacity, lack of appropriate products and attitudinal barriers. cbr workers from the central and northern areas explained the negative experiences of approaches to providing wheelchairs by some local producers, ad hoc political and charity mass distributions and community organisations. numerous concerns were raised regarding products being provided without individualised service, echoing the damaging effects on health found by visagie et al. (2015b) and negatively impacting mobility. central: ‘some organisations say i’ve got 50 wheelchairs. then the issue of not being measured and assessed also comes in, because it’s a gift. have that one! if it fits you – good! if it doesn’t fit you, you still have it.’ conversely, for those who did access the new wheelchair services, feedback from the cbr workers highlighted benefits to users, similar to recent findings in kenya and the philippines (williams et al. 2017). north: ‘there is assessment [ ] they take measurements, [then] they make modifications. if they are fitting one chair in the hospital, they are spending a lot of time because they make sure it is modified to fit the child.’ despite the availability and benefit of the new wheelchair services, the cbr workers identified challenges with access and utilisation. in the north and central areas, apparent gaps between policies and their implementation resulted in confusion for pwd as well as the cbr workers and further reduced use of the available services. central: ‘uganda are supposed to produce wheelchairs, but you are finding because the government doesn’t have a goodwill, there’s no proper funding. the guidelines are also weak and personnel are very few. [ ] that’s why production wheelchairs is very low.’ north: ‘in uganda the law says the government should assess pwd and provide them with movement facilities. so i think maybe pwd [ ] know their rights, and that’s why they won’t pay.’ north: ‘our situation is not that we have very few wheelchairs – the wheelchairs are there. or that the need for the wheelchair is not there – it is there. but they are not given out as fast as possible because people think that it has to go for free.’ attitudinal barriers were cited as a further reason why people lacked mobility. the groups from the north and west explained that many people were too afraid to access the health facilities in which the new wheelchair services were located fearing negative attitudes and behaviours directed towards them. persons with disabilities from the north pressured the cbo to continue to provide them with wheelchairs rather than refer them to the hospitals. north: ‘if one is afraid [of the hospital], this means they won’t turn up for the wheelchair even if they are in need.’ this echoes findings in southern africa where historical and a prevailing medical model approach to disability resulted in fears of pwd regarding discrimination from health providers leading to their avoidance of health institutions (grut et al. 2012). according to cbr workers from the north, some people also resisted referrals to the wheelchair service because of past disappointments, which included products promised and not received; services only provided to select groups; or once acquired, the wheelchair not being suitable. such disappointments result in lack of trust to accept new opportunities (grut et al. 2012). furthermore, cultural beliefs played a major role in all areas and prevented carers from wanting the visibility (of the pwd) that a wheelchair affords. it also appeared that people with limited exposure to wheelchairs also had fears regarding negative impacts on the user’s health and functioning, how to use it and of causing damage to it. central: ‘i stood on my feet and said no, my child won’t get a wheelchair. that would mean they would never walk again.’ despite the positive experience of the new service approach, the length of the process and the resulting low output of the services were experienced negatively. reasons given for the delays and low output in the north included limited service personnel; wheelchair service delivery restricted to 1 day a week; and, as previously highlighted by bray et al. (2014), the complexity of the type of work. the distances between communities and services also posed challenges to service delivery for both wheelchair service providers and users. west: ‘transporting those wheelchairs, [ ] and two technicians from [the service] to the outreach is difficult to manage.’ north: ‘you may need to travel to the hospital, maybe twice or even three times to access the chair, and most of the parents give up.’ earlier findings elsewhere indicate that insufficient maintenance led to premature wear and tear and avoidable break down (bazant et al. 2017; toro et al. 2016; visagie et al. 2015b). similarly, even where pwd received appropriate, durable products, mobility was impaired over time by the condition of the wheelchair because of parts stolen by community members, high activity levels in rough terrain areas and inappropriate storage. further reasons surmised include insufficient user skills and knowledge, lack of compliance and difficulty accessing repair services reflecting similar challenges as also reported by banda-chalwe et al. (2014). north: ‘general negligence around maintenance… a simple problem on a wheelchair that could be fixed is usually not done till the problem gets worse.’ west: ‘this repair has to be done in the (service). this parent has no money and the distance is too long.’ participation restrictions (international classification of functioning, disability and health: participation restrictions in major life areas and community, social and civic life) concurring with findings by toro et al. (2016) in indonesia and borg et al. in bangladesh (2012), the participants here reported many challenges to participation, even once an appropriate wheelchair was provided, for example: central: ‘sometimes we give wheelchairs to these people, but then it doesn’t change a lot in their quality of life. for example, if a child is school-going, and you give them a wheelchair, but still they stay at home?’ using a wheelchair in these low income and often rural areas with multiple environmental and attitudinal barriers was reported to result in undue fatigue of the user and family and negatively influence agency. interestingly, grut et al. (2012) and zuurmond et al. (2015) found that this leads to fragmented levels of participation. the daily challenges were made evident in the numerous stories shared. north: ‘we don’t use the road, we use the path and the path is very narrow. at times we have to cross the river, and there is no bridge, so you have to carry the wheelchair on your back or on a bicycle.’ central: ‘she stopped over six taxis, but they were all leaving her because she had a wheelchair.’ central: ‘it’s very expensive for someone who is very poor [ ]. these wheelchairs are bulky. [ ] if you use a boda (motorbike taxi), then that means you have to get three, one for you, one for the wheelchair and one for your guide.’ west: ‘… their parents regard it as a tiresome exercise – they say they have a lot in terms of looking for survival, and now … getting time to spend on this child…?’ central: ‘it’s the parents to decide which is more beneficial, him staying with the wheelchair at home, or the wheelchair being kept at school; it can’t be in two places [ ] it means he won’t move [ ], engage in play or interact with peers.’ there was also a lack of wheelchair users as positive role models: north: ‘most disabled children that have had limited exposure and mentorship from adult disabled person look at themselves as valueless in the community.’ lang et al. (2011) earlier warned that few examples of how to be empowered and live a good life may lead to limiting decisions about capability, that is, based on what is thought to be possible rather than what is possible. unavailable and/or unskilled support system (international classification of functioning, disability and health: interpersonal interactions and relationships) challenges including those discussed above contributed to high levels of dependence of wheelchair users. reported caregiver support was however limited by their competing priorities, such as the need to earn an income or care for other children. central: ‘if this child has to be wheeled to school, [and] the mother has so many other commitments, he won’t attend school; because she’s the only person to wheel the boy.’ extended family and community members were in some instances willing to assist, but lack of knowledge and skills impacted on safety and waning interest often reduced reliability. central: ‘at first some teachers were willing to do so, but then their attitude changed. i think because he was new [ ] but after he had stayed for a year, it feels like it’s a lot of work for them. now no-one feels interested to do so.’ however, fears of vulnerability of women and girls also led to rejection of offers of support. north: ‘because of such support many especially the females have been objects of sexual abuse. many because of this will want support from their parents or close relative. most parents are very protective of the girl child.’ thus, not participating in activities was at times preferable to requesting support and inconveniencing others. in many instances, wheelchair users and assistants were reportedly not using the wheelchair correctly or optimally and not taking good care of it. this is similar to findings in other low-resourced settings (bazant et al. 2017; toro et al. 2016; visagie et al. 2015b). reasons provided in this study included insufficient time spent on training, complexity of the product and product-related information, and general lack of compliance. west: ‘…parents are trained but on a small scale because of limited time and few service providers and they don’t remember everything.’ furthermore, the person receiving the initial training from the service was not always the main, only or permanent assistant but rather someone who was available at the time (e.g. the grandmother). newly learnt skills were often not transferred to others in the family and local community thus further affecting how the wheelchair was used and maintained. north: ‘the toolbox might be there but there is only a grandmother – don’t even know a spanner – you need someone who has a skill.’ north: ‘sometimes even the family members are not aware of how to maintain the wheelchair and how to take care for that person. that’s why we find that the wheelchairs get destroyed.’ difficulty maintaining health (international classification of functioning, disability and health: self-care) wheelchair users struggled to maintain their health because of inappropriate wheelchair designs, misuse of wheelchairs and poorly fitting wheelchairs, factors previously also documented by scovil et al. (2012). in one example, a child was left in a wheelchair with no one to assist with toileting needs while the parents had to go to the field to work. in another example, a child’s head continuously hung forward because of inadequate wheelchair support. follow-up services were lacking and yet, according to bazant et al. (2017) and visagie et al. (2015b), these could help in identifying unsafe situations and incorrect prescriptions which could lead to further health complications. similar to the findings in zambia (banda-chalwe et al. 2014), barriers to physical accessibility led to significant challenges and health concerns. central: ‘kids who are using wheelchairs [ ] have to transfer from a wheelchair and then use their hands and enter in a latrine which is already very dirty. they end up getting secondary infections.’ furthermore, lack of understanding and insight in the community presented risks to health management (e.g. when school children in the north were disciplined for transferring out of their wheelchairs when they wanted to change positions to relieve pressure). health is further impacted when health needs are not recognised and medical input is not received timeously. central: ‘because the mum is sick, and the child is not able to wheel herself, she finds herself not going to the hospital, even when she was supposed to get medication.’ themes 3 and 4: possible role of community-based rehabilitation workers and facilitators needed to achieve this in response to objective 3, the who wheelchair service delivery steps as well as the who (2012) cbr matrix (empowerment) were used to analyse responses contributing to theme 3 (the cbr workers’ perceptions of their potential roles). in fulfilment of objective 4, responses analysed during cross referencing between the three groups contributed to theme 4 (facilitators needed to achieve their role). possible role of community-based rehabilitation workers the participants here made a range of suggestions for their role. including typical functions of cbr workers, such as referral, support and empowerment, they also highlighted their potential role in supporting wheelchair service delivery. they illustrated the contextual sensitivity required because of the wide range of challenges. suggestions showed how their ability to move to the location of the pwd, to the wheelchair service and to other stakeholders and to spend the time needed provided them the opportunity to identify and address some of the diverse challenges. their experience of working with pwd and understanding of local networks and contextual challenges contributed to various suggestions and further reinforced, as observed by chappell and johannsmeier (2009), the importance of the ‘how’ in a cbr worker’s approach. it is not just what cbr workers do but how they do it (e.g. seeking local, contextually appropriate solutions within trusted, community-based relationships that contribute to their effectiveness (hartley 2004). the cbr workers who had observed wheelchair service delivery from assessment to fitting and user training commented on the efforts of the service personnel and the positive outcome and suggested that they could assist in the referral process by transferring information and encouraging people to accept referrals. north: ‘you say that you pay some small amount of money, but the real cost of the wheelchair is almost a million [uganda kwacha/usd280]. [ ] if they have understood, then people will start paying that money.’ other suggestions included arranging for pwd to reach the service by helping to raise funds, source transport and gather groups of pwd together along with facilitating the service providers to plan and prepare for outreach visits. some of their stories highlighted determination and skills in communication and negotiation as useful traits to be effective – along with resources, such as telephones, airtime or money, to reach people. west: ‘we talk to [the users to see if they] are able to afford the transport that can make [them] reach [the service]? then we again talk to the technician. if all are agreed [then] we access the service.’ in some instances, accompanying the pwd to the service was perceived as useful to help them locate the service and overcome fears of unfamiliar situations. the impact for the service provider in accurate assessment is inferred in this statement. west: ‘the cbr worker is known to the parent, [ ] then the parent will [feel] at home, then he can be able to elaborate more.’ one participant suggested assisting with product preparation and/or user training during the service to increase service efficiency. following up the wheelchair user at home was advocated as a continuum of service for the cbr worked to reinforce, refresh or transfer skills and knowledge regarding use and maintenance of the wheelchair and to assist in overcoming environmental barriers in the home. north: ‘those mothers can have enough time with you to ask what they don’t know, and you also have enough time to explain to them and demonstrate.’ west: ‘caretakers [ ] get tired. so, when they get tired, cbr workers make some follow-ups. you can train another one to carry on with the activity.’ some participants suggested they could help with maintenance and basic wheelchair repairs during visits and others spoke of the importance of these visits to alert wheelchair services to critical issues needing their input. these follow-up visits would benefit durability and safety of the wheelchair (chen et al. 2011; toro et al. 2012). it was evident that the need for follow-up was unpredictable and arose on an ad hoc basis, highlighting the value of cbr workers’ involvement as low-resourced wheelchair services can at best offer this on a scheduled basis. added benefits of home visits by cbr workers include awareness of and response to a range of common daily difficulties in communities where few people understand wheelchairs (fefoame, walugembe & mpofu 2013). smith et al. (2014) suggest that wheelchair users faced with complex and multiple challenges would benefit from diverse factors being addressed simultaneously. this was effectively demonstrated in a story from the north in which provision of appropriate wheelchairs for children was accompanied by the cbr worker using his knowledge to inform school management, teachers and pupils to relay fears of disability, advise on accessibility and train school representatives on use of and care for the wheelchair. such creative and imaginative solutions were also found to overcome barriers elsewhere (booyens et al. 2015; lang et al. 2011). participants from the west recounted how one cbr worker’s physical and caring interaction with a disabled child while feeding her in her wheelchair (purposefully in sight of other community members) challenged their fears and misconceptions that disability is contagious. the impact on some community members was that they in turn challenged others on their fears and the importance of interacting with even the most disabled. resilience, determination and resourcefulness along with utilising community networks were shown to impact inclusion elsewhere (geiser & boersma 2013; hansen, siame & van der veen 2014) and here: north: ‘the community will act as vigilantes to see that assets, wheelchairs for people with disabilities, are protected. if the community is aware they will severely punish whoever causes problems.’ participants perceived their potential role in identifying and strengthening peer role models and linking wheelchair users to one another for support (chappell & johannsmeier 2009). the accelovate study (bazant et al. 2017) in kenya recommended trained peers for supporting pwd, while booyens et al. (2015) found that cbr workers could draw on empowered pwd to influence leaders and community actors to make change, as was also demonstrated here: north: ‘if we empower a wheelchair user they will be able to explain their own experience and they [community leaders] will listen [ ] cbr role in this is [ ] to connect them with those leaders’. some of the cbr workers in the north and central areas demonstrated that their exposure to the range of wheelchairs and provision approaches in their area could benefit wheelchair services, thus confirming earlier evidence (fefoame et al. 2013). they showed an appreciation of the influence of design and material on durability, safety and function and expressed strong emotions about wheelchair suitability for users. this was despite having received no specific information on the different types and models of wheelchairs available, affecting the quality and efficiency of their feedback. facilitators needed for community-based rehabilitation workers to achieve their potential role when the cbr workers were asked what they required to fulfil what they had suggested, all groups identified training, financial resources and collaboration with health services, confirming earlier findings (booyens et al. 2015; deepak et al. 2014; wickenden et al. 2012). the variation in knowledge displayed during the fgd may be expected of cbr workers but also highlights lack of consistent or appropriate knowledge transfer from newly trained wheelchair service providers. north: ‘what i know is there is a need for capacity building [ ]. we may be doing different things.’ only 10 of the 21 participants had received training on wheelchairs, and this ranged from 2 h to 3 days. some recommended that the trainings should be attended by all cbr workers, while another mentioned that parts of the training received were not useful for his role. groups suggested similar items for training content including wheelchair types and features; mechanisms to access the service and a better understanding of why a new approach to wheelchair provision is needed. furthermore, skills in using and maintaining the wheelchair and environmental accessibility and adaptations were also commonly identified as important skills (heinicke-motshe 2013; nganwa et al. 2013). additional items, such as skills to measure clients, assemble products and carry out basic repairs as well as fundraising, nutrition and early identification, suggested individual or contextual needs. one person reflected how using a wheelchair during a training session increased her understanding and empathy. central: ‘it got me thinking this is not really something easy, i really got in their shoes, i must confess it was really hard.’ close collaboration with the wheelchair services was advocated. for those cbr workers not based at the same location as the wheelchair service, receiving updated information and planning logistics typically depended on the efforts and resources of an individual cbr worker. as suggested by geiser & boersma (2013), coordinated mechanisms between cbr workers and wheelchair services would increase efficiency and provide a platform for information transfer, and borg et al. (2011b) recommend reviewing systems of provision to ensure cost-effectiveness. two groups also commented on the need to prove their legitimacy and be better recognised in order to enter hospital grounds and communities without challenge. one cbr worker suggested an information pack to clearly show pwd which wheelchairs are available. financial resources to make home and service visits possible were mostly lacking with some workers telling how they used their own resources, when available. resources are thus required, also for empowerment activities such as introducing wheelchair users to peer role models. some of the workers particularly in the west suggested tools to assist with basic repairs. many group contributions displayed passion, commitment and determination similar to that found by booyens et al. (2015) with community workers in southern africa. this was despite challenges expressed related to capacity and isolation, especially in the north and west (fefoame et al. 2013; nudipu 2013; wickenden et al. 2012). the group in the west arrived on a non-work day, some traveling over 2 h without promise of remuneration and stayed engaged for over 3 h. the gathering led them to form a group which continued to meet following the study pointing to their need for peer support. one cbr worker showed interest in increasing skills to take measurements during follow-up to identify problems and alert the service. as recommended in the accelovate study (bazant et al. 2017), it could be useful to train cbr workers to assist with all steps of wheelchair service provision. however, considering the prerequisite facilitators identified to fulfil their role, it would be essential to ensure this was included in a coordinated system and within a broader wheelchair service strategy. limitations owing to the limited time frame, human and financial resources in this small scale study for degree purposes, only one fgd was possible per group. data would have been richer with two or with other data collection methods aiding triangulation (mack et al. 2011). the findings were analysed manually by the researcher. the use of qualitative data analysis software may have provided a more rigorous analysis. recommendations the findings indicate that stakeholders interested in developing or improving wheelchair service provision in low income contexts would benefit from engaging with local cbr workers to anticipate the challenges and factors which may affect access to wheelchair services and prevent pwds from benefitting from an appropriate wheelchair. the potential role of cbr workers and facilitators for this role should be jointly identified with a plan to equip them and ensure effective collaboration. a standardised but flexible training package drawing on the who wheelchair service training packages developed by the international wheelchair or cbr community would simultaneously facilitate consistency and support trainers to adapt it and apply it to their context. further engagement with key stakeholders in uganda could include the findings of the report and explore perspectives of other stakeholders on whether and how to further develop the role of cbr workers in wheelchair service provision. further research is recommended in areas where cbr workers have been well equipped and purposively engaged to evaluate the impact, broaden the understanding on their role and implement the necessary steps to achieve this. conclusion the cbr workers in this study identified and described many ongoing challenges for wheelchair users in the areas with wheelchair services, most notably the pwds’ continued lack of mobility either from not accessing the wheelchair service or because of their wheelchair being damaged or worn out and from limited or inconsistent levels of participation. perceived reasons were diverse and demonstrated the interaction between contextual barriers prevalent in low income settings with an undeveloped wheelchair service provision system. with regard to the who comprehensive wheelchair service steps, the cbr workers expressed their role in identifying, referring and facilitating access to the service; reinforcing and transferring skills and knowledge in wheelchair use; carrying out home and community visits to follow-up; and contributing to maintain the wheelchair. further, they can implement strategies for empowering wheelchair users and overcoming environmental barriers to participation. their inputs on the cbr workers’ potential role indicated their insight to the diverse, observed challenges and highlighted how the attributes of cbr workers could benefit the system. being at grassroots level, being known to the community and being familiar with the culture and networks equip them to identify issues and navigate solutions. their commitment to pwd was evident in the wide range of suggestions on how they, with the needed support, could assist. determining and formalising the role of the cbr workers in collaboration with the wheelchair service could achieve a degree of consistency in their role, enable comparability and ensure that the wheelchair service can benefit from their grassroots experience. suggestions to achieve and maintain this included provision of training and financial resources and establishing effective communications between the cbr workers and the wheelchair service providers. acknowledgements the authors gratefully acknowledge the support of motivation charitable trust during this study for financial, human resources and logistical support. the authors would also like to acknowledge the valuable and constructive inputs of the late dr paul chappell and mrs gakeemah inglis-jassiem during the examination stage of this study for degree purposes and those of the anonymous peer reviewers. all three authors were affiliated to stellenbosch university, centre for rehabilitation studies at the time of completing and writing up this study. competing interests the authors declare that they have no competing interests with regard to the writing of this article. authors’ contributions n.s. carried out the research and wrote up the study as part of a structured master’s degree under the guidance of m.g. as main supervisor and e.s. as co-supervisor. funding this research was partly funded by the motivation charitable trust and the harry crossley foundation (2015). references abimanyi-ochom, j. & mannan, h., 2014, ‘uganda’s disability journey: progress and challenges’, african journal of disability 3(1), art. #108, 6 pages. https://doi.org/10.4102/ajod.v3i1.108 banda-chalwe, m., nitz, j.c. & de jonge, d., 2014, ‘impact of inaccessible spaces on community participation of people with mobility limitations in zambia’, african journal of disability 3(1), art. #33, 17 pages. 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(who), 2015, wheelchair service training package for manager and stakeholders, viewed 02 october 2015, http://www.who.int/disabilities/technology/wheelchairpackage/en/.viewed from http://www.who.int/phi/implementation/assistive_technology/wheelchair_train-. zuurmond, m.a., mahmud, i., polack, s. & evans, j., 2015, ‘understanding the lives of caregivers of children with cerebral palsy in rural bangladesh: use of mixed methods approach’, disability, cbr and inclusive development 26(2), 5–21. page 1 of 1 reviewer acknowledgement http://www.ajod.org open access acknowledgement to reviewers in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on https://ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website 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bekker terry j. ellapen tonderai w. shumba tongai f. chichaya unati stemela-zali victor de andrade warren p. charles wisdom k. mprah zara trafford http://www.ajod.org� https://ajod.org mailto:submissions@ajod.org https://ajod.org https://ajod.org/index.php/ajod/user https://ajod.org/index.php/ajod/user mailto:publishing@aosis.co.za acknowledgement to reviewers article information authors: liezel wegner1 anthea rhoda1 affiliations: 1department of physiotherapy, university of the western cape, south africa correspondence to: liezel wegner email: liwegner@uwc.ac.za postal address: 27 h cherry hills crescent, sunningdale 7441, south africa dates: received: 16 apr. 2014 accepted: 05 nov. 2014 published: 26 mar. 2015 how to cite this article: wegner, l. & rhoda, a., 2015, ‘the influence of cultural beliefs on the utilisation of rehabilitation services in a rural south african context: therapists’ perspective’, african journal of disability 4(1), art. #128, 8 pages. http://dx.doi.org/10.4102/ajod.v4i1.128 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. the influence of cultural beliefs on the utilisation of rehabilitation services in a rural south african context: therapists’ perspective in this original research... open access • introduction    • rural health    • cultural beliefs    • rehabilitation    • therapists’ perspective    • rationale • methodology    • research question    • aim • design    • setting    • participants    • data collection procedure    • method of data collection • data analysis    • ethical considerations    • trustworthiness • findings    • participants    • cultural beliefs preventing the utilisation of rehabilitation services    • beliefs regarding cause of disease    • stigma    • community perception of worth    • cultural beliefs affecting the utilisation of rehabilitation services    • lack of conviction about the efficacy of rehabilitation    • continuity of rehabilitation    • quality of rehabilitation • discussion • recommendations    • limitations of the study • conclusion • acknowledgements    • competing interests • references introduction top ↑ south africa has a population of 51.8 million people of which 7.5% over the age of five has a disability according to the latest census data (statistics south africa 2014). this statistic on the national prevalence of disability should be interpreted with caution since psychosocial and neurological disabilities are not accounted for (statistics south africa 2014). the most recent data on disability in south africa is from the national census of 2011, which defined ‘disability’ as: … a physical or mental handicap which has lasted for six months or more, or is expected to last at least six months, which prevents the person from carrying out daily activities independently, or from participating fully in educational, economic or social activities. (statistics south africa 2014) in south africa 38% of the population resides in rural areas, and 25% of the labour force is unemployed (the world bank 2014). at the time of the national census in 2011, more than a quarter (26.3%) of all poor people in south africa resided in kwazulu-natal (kzn), most living below the per capita upper-bound poverty line of r620 per month (statistics south africa 2014). the co-existence of poverty and disability reinforces one another (grech 2009; sala-i-martin 2005). high levels of poverty together with the high incidence of disability and the large percentage of the population living in rural areas, present challenges to providing ‘health for all’ in south africa (department of health [doh] 2010; schaay & sanders 2008). rural health equitable access to health care is a right of every person with a disability (united nations [un] 2008; heapa, lorenzo & thomas 2009). a number of barriers to access in rural areas such as long distances to hospitals or clinics and poor public transport have been identified in the literature (beatty et al. 2003; harris et al. 2011; maart et al. 2007). in south africa the attitudes of society, and practices and ideologies, have been highlighted as important environmental barriers in rural areas (maart et al. 2007). societal perceptions, practices and ideologies form the basis of cultural beliefs, a known but less-explored barrier to accessibility of medical services in rural areas (maclachlan 2006). cultural beliefs cultural beliefs define who people are, how they interact with the world and how they behave in certain situations, and can be considered a combination of religious beliefs, socially accepted norms and traditions (bailey, erwin & belin 2000; omu & reynolds 2012; maart et al. 2007). culture plays a central role in health related behaviours (carroll et al. 2007; omu & reynolds 2012). the importance of cultural beliefs regarding health and health seeking behaviour has been well-documented (bailey et al. 2000; carroll et al. 2007; legg & penn 2013; maart et al. 2007). different cultural groups have vastly different perceptions of the causes of disability and disease and these perceptions influence their health seeking behaviour (bailey et al. 2000; legg & penn 2013; pronyk et al. 2001). according to the south african department of health's disability survey, 3% of the population stated ‘bewitchment’ as the cause of their disability (doh 2002). in a rural south african study the belief that ‘bewitchment’ caused tuberculosis resulted in a delay in seeking western health care (pronyk et al. 2001). omu and reynolds (2012) conducted a similar study into health seeking behaviours in kuwait, and although persons with disabilities believed that their disability had a divine origin it did not stop them from utilising rehabilitation services. it is thus imperative to understand how a specific cultural group's beliefs influence their health seeking behaviour. rehabilitation rehabilitation plays an essential role in minimising the impact of impairments on the activities of daily life and participation in their communities of persons with disabilities (world health organisation [who] 2011). rehabilitation is also commonly used as an umbrella term for the therapy provided by different therapists and rehabilitation workers working together towards the common goal of improved functionality and quality of life for the person living with the disability. physiotherapists have an important role to play in primary, secondary and tertiary prevention of disability in developing countries (wickford & duttine 2013). rehabilitation is ideally provided by a multidisciplinary team, but most often physiotherapists or occupational therapists are the only rehabilitation workers servicing rural areas (bateman 2012; who 2011). human resources for health have been identified as a key priority for rural health care in south africa (versteeg, du toit & couper 2013). attracting and retaining staff to work in rural areas is a problem worldwide, and understanding the difficulties health care professionals face in these settings, is imperative to implementing retention strategies (rural health advocacy project [rhap] & partners 2013). therapists’ perspective exploring the perspectives of the rehabilitation therapists aids in the understanding of the challenges they face as well as gaining insight into difficulties with rural rehabilitation. however, few studies explore the role of physiotherapists, occupational therapists and speech therapists working in rural areas and their views on factors that affect their services. rationale health promoting programmes in developing countries are often not successful because of a lack of compatibility with culture specific beliefs (maclachlan 2006). health care professionals’ lack of cultural awareness may lead to cultural imposition (campinha-bacote 2002). in order to provide an effective and culturally responsive health care service to the multi-cultural population of south africa, health care workers need to be culturally aware and competent (carroll et al. 2007; campinha-bacote 2002). according to campinha-bacote cultural awareness is a study of your own cultural biases and background in order to prevent imposing your own cultural beliefs on another cultural group. cultural awareness is also considered the cornerstone to become culturally competent. according to campinha-bacote's (2002) model of cultural competence, becoming culturally competent consists of five constructs namely cultural awareness, knowledge, skill, encounters and desire of which cultural knowledge is a key factor. cultural awareness relates to self-exploration and reflection on your own beliefs regarding culture. this process is an important step in trying to recognise your own biases in order to avoid imposing your own cultural beliefs on others. cultural knowledge can be built by engaging with persons from different cultural backgrounds. the knowledge component that this article relates to is an understanding of a specific cultural group's worldview of their disability or disease, and how they make decisions regarding their own health. cultural skill refers to the health care provider's ability to perform a physical assessment of a patient taking into consideration variations within different cultural groups. cultural encounters and desire refer to the individual's initiative to experience difference cultures (campinha-bacote 2002). this article intends to enhance cultural awareness by the exploration of therapists’ perceptions about cultural beliefs. the fact that cultural beliefs often lead to discrimination against persons with disabilities, has been covered in the literature. in a study on the abuse of disabled children in ghana, the cultural belief that disabled children were cursed, led to such severe stigmatisation that children were often hidden away by their parents, or left at a river to die (kassaha et al. 2012). however, more needs to be known about the perspectives of physiotherapists, occupational therapists and speech therapists on factors that affect their rehabilitation services in rural areas (bateman 2012). cultural beliefs can be considered as personal factors within the international classification of functioning, disability and health (icf) framework that could potentially disable a person with an impairment. identifying personal and contextual barriers that are associated with cultural beliefs will assist in minimising activity limitations and promote the integration of persons with disability into society (who 2001). the aim of this study was to explore the experiences of rehabilitation therapists (physiotherapists, occupational therapists and speech therapists) working in a rural area in kwazulu-natal (kzn). the theme of cultural beliefs as a barrier to rehabilitation emerged so strongly in every focus group discussion, that it was explored in more depth with probing questions. this article primarily reports on the perceived effect of cultural beliefs on the utilisation of rehabilitation services in a rural community, potentially raising cultural awareness amongst therapists. although the patients’ perspective could be considered a more accurate view of the beliefs that affect their utilisation of rehabilitation services, the view of experienced therapists working in a rural area is also an important consideration. the therapists’ views might be biased, but provide insight into their perceptions of cultural beliefs, and are important for improving rehabilitation services (suddick & de souza 2007). raising cultural awareness amongst therapists working in rural areas could begin to address some of the many contextual factors inhibiting patients from accessing rehabilitation. methodology top ↑ research question do cultural beliefs affect the utilisation of rehabilitation services in a rural community in south africa? aim to explore the cultural beliefs that affect the utilisation of rehabilitation services in a rural community in south africa from the therapists’ perspective. design top ↑ an explorative qualitative design was utilised because very little information is available on the topic, and the problem is not well understood (berg 2001). the primary method of data collection was focus group discussions (fgds). a focus group uses a guided, interactional discussion as a means of formulating the details of complex experiences and the reasoning behind individuals’ actions, beliefs, perceptions and attitudes (powell & single 1996). demographic information was also obtained and documented for each participant at the start of the focus group, but will not be published in order to respect the confidentiality of the participants. setting this study was conducted in a rural district in the kzn province of south africa. the population in this district mainly represents the zulu cultural group. rurality is poorly defined in the south african context, but is generally classified according to the lack of infrastructure found in urban areas such as tarred roads, running water and electricity supply (department of provincial and local government [dplg] 2000). duncan, sherry and watson (2011:30) define rurality as the combination of multiple factors affecting the quality of life of people living in sparsely habituated settlements with limited access to public services. the rural doctors association of south africa (2006) considers an area ‘rural’ when more than 50% of the population lives further than five kilometres from a tarred road, and 25% of the population has to collect water from natural sources. participants the sampling frame for the study consisted of all rehabilitation therapists working at five district hospitals in a rural community in south africa. all available therapists who agreed to participate at the time of the discussion were included. a total of 17 rehabilitation team members were conveniently selected to participate in the fgds that were conducted at each of the five hospitals. the 17 participants included eight physiotherapists, seven occupational therapists, one dietician and one speech therapist. data collection procedure the head of the therapy department at each hospital was contacted telephonically, and appointments were made at a time that was convenient for most of the staff members, bearing disruption of their normal duties in mind. data was collected by the researcher in person. the purpose and aim of the study was explained to all participants, and participating members signed an informed consent form agreeing to be audio-taped. each participant completed the demographic survey. all five the fgds were conducted at the therapy departments of the respective hospitals, and voice-recorded. method of data collection the focus group discussions were started with one grand question: ‘can you please tell me more about your experiences as a rural therapist/rehabilitation team member?’. participants freely shared any experience that they chose and the discussion flowed from the first participant's comments. the topic of how cultural beliefs affected the therapists’ experiences and especially the patients’ health seeking behaviour was raised by the therapists at each fgd, and probing questions were asked to explore this topic in more depth in subsequent fgds. the fact that this topic was raised in every fgd without initial prompting from the researcher enhanced the relevance of it to this rural area, and the importance of cultural awareness to the therapists. data analysis top ↑ the qualitative data was analysed using creswell's (2009:185) eight step process of analysis. according to creswell, following these steps from working with raw data to interpreting the meaning of themes assists in validating the accuracy of the information obtained from qualitative research studies. the interviews were transcribed verbatim, and checked for any mistakes or missed words against the audio recording. checking of transcripts improves the trustworthiness of the findings (gibbs 2007). all the interviews were conducted in english. the transcriptions were read and re-read several times by the researcher in order to gain an overall understanding of the data before commencing with the coding process. making use of open and axial coding (creswell 2009), transcripts were coded to identify common concepts within the participants’ responses. codes were grouped into categories, and similar categories were analysed and emerging themes identified. ethical considerations ethical clearance to conduct the study was obtained from the senate research committee at the university of the western cape. permission was obtained from the relevant provincial department of health and the management of all the hospitals involved in the project. all participants gave informed consent in writing and agreed that their voices could be recorded. participants were guaranteed that their identity would be kept confidential, and pseudonyms (p1–p17) were used in the transcription of the data instead of the participants own names. only the researcher and the person who did the transcriptions had access to the voice-recordings. participants were ensured that they could withdraw from the study at any time during the interviews without any consequences, and that they could inform the researcher if in hindsight they decided that what they had said could not be used for research purposes. no therapist made use of this opportunity or asked that anything that they shared should not be included in the study. trustworthiness a summary of each focus group discussion was sent back to the participants for review to establish that their comments were not misinterpreted by the researcher and to ensure dependability. the confirmability of the research was enhanced by asking an independent reviewer to analyse the raw data and compare the various categories and themes. an independent reviewer cross-checked the codes to determine inter-coder agreement and improve the trustworthiness of the findings (creswell 2009). the specific findings of this study do not have high transferability, because the cultural beliefs mentioned in the study might only be representative of the specific cultural group. the general influence of cultural beliefs on utilisation of rehabilitation services might however be applicable to other cultural groups in rural regions of south africa. findings top ↑ participants the mean age of the participants was 27 years at the time of data collection. the racial distribution of participants was almost equal. nine caucasian and eight african staff members participated in the discussions. of the 17 participating therapists, 10 were female, and 7 were male. the mean years of experience working in a rural area was five years for permanent staff members, and three and a half years when taking the community service therapists (contract staff) into consideration. according to therapists working in this area, cultural beliefs play a major role in the utilisation of rural health services. in this specific zulu community different beliefs affecting rehabilitation services were identified. these beliefs were grouped into two themes: cultural beliefs preventing patients from accessing rehabilitation services, and cultural beliefs affecting the rehabilitation process of the patient when utilising the service. cultural beliefs preventing the utilisation of rehabilitation services several cultural beliefs seemed to prevent patients from utilising rehabilitation services. these factors were categorised into beliefs about the cause of a disease, stigma and community perception of a person's worth. beliefs regarding cause of disease the therapists reported that patients believed that their pain and disease is of a spiritual nature and that western medicine cannot cure them in the spiritual realm. this belief often leads to the refusal of hospital treatment, with patients opting to consult a ‘spiritual’ or traditional healer. one therapist reported patients saying: ‘i had a dream last night that somebody stood on me in my dream and now it's a curse that's been put on me [therapist quoting a patient's description of how his pain started] (p6)’. ‘…[y]ou can't separate traditional and cultural factors from your treatment but you can do as much as you can in the hospital and if the family decides to go and consult with a traditional healer you can only advocate this much…you can't judge it either, you can't say you are doing the wrong thing and you are going to kill this person if you do this’ (p6). stigma therapists highlighted that patients often do not attend therapy because it is too difficult for them to get to the hospital or clinic as a result of the stigma attached to being disabled. taxis and cars will not stop to provide transport for persons with disabilities because they believe that the person might be cursed; so if people with disabilities do not own a car or is not able to drive themselves, they cannot attend therapy. according to participant 4: ‘some people discriminate against moms with disabled children because they are “strange” and they don't like having them in their cars … it's not always just money, its people's attitudes towards disabled people’. community perception of worth persons with disabilities were perceived to be less valuable in their communities or household if they were dependent on carers and could not continue contributing towards the household. this was more evident when the patient did not receive a disability grant. subsequently therapists reported that their condition often deteriorated at home: ‘…[y]ou find, at home the people who are supposed to be looking after the patients, you know, usually lose that kind of care for the patient, because now the patient has to depend on them foreverything, so you find that most of those patients, their condition usually get worse’. (p10) cultural beliefs affecting the utilisation of rehabilitation services in some cases patients did commence rehabilitation, but cultural beliefs played an important role in the patients’ conviction regarding the efficacy, continuity and quality of rehabilitation, from the therapists’ perspective. lack of conviction about the efficacy of rehabilitation patients did not belief that rehabilitation would be effective in decreasing their disability, because they do not understand the cause of their problem, or they believe that it has a mystical origin: ‘i had specifically a girl that has a psychological gait pattern, she was telling me that people don't want her to walk, and that people have cursed her … so we've sent her to the psychologist to see what it was, he told us that she has the ‘ukuthwasa’ or the calling to become a sangoma, and if you deny that calling, then it will manifest physically in your body as a disability. you can do whatever you want for her, but if she believes that this is ‘ukuthwasa’ and unless she goes that route it will not be sorted out (p11). to go now [and advise the patient] you need to go do these exercises after you [the patient] think you've got this pain because you had this dream or you've been bewitched or something is a very, very challenging thing’ (p6). continuity of rehabilitation often patients come for rehabilitation but their cultural roles prevent them from complying with therapy or rehabilitation; for example, only women traditionally fetch and carry water on their heads. if a female injured her neck or suffers from arthritis, she is culturally not allowed to modify her behaviour in order to rehabilitate her injury. ‘women are expected to “twala” [carry] everything so if they are sick they understand, but still continue with the work’ (p7). patients in rural areas also seemed to have a cultural misconception that therapists from their own culture were less qualified or less capable of providing a good service than therapists from other cultures. they would sometimes stop rehabilitation if they realised that the therapist was someone they knew from the area, or if they were from their own race: ‘…[b]ecause we are black, people they undermine us. if you are from the local area … they say, oh, you know me …’ (p8). ‘…[s]o that is the kind of perception that they'll have that …hey, you don't write on my file if you are, you know, my own race!’ (p10). ‘[i]t's just the kind of perception that they have, you know, the only educated person, you know is the white person, especially with the old age group [older person]’ (p10). quality of rehabilitation most therapists felt that the quality of the rehabilitation services that they provided was compromised by cultural beliefs. this was true for therapists from the same and different cultures. therapists from a different culture who did not speak the local language rely on translators to assist with the diagnosis and treatment of the problem. therapists felt that the local translators modified what they said to the patients because they did not believe or understand what the therapist was trying to explain to the patient. ‘the way that the translators will translate … it's like you say this long like sentence and they [the translator] just say like two words … they don't understand’ (p1). cultural beliefs also made the provision of certain services impossible. therapists felt that mental health problems were especially difficult to negotiate: ‘as an ot [occupational therapist] for mental health issues … i don't even go there because there are so many cultural beliefs involved … there's so many, to do that through a translator as well, i find it very difficult’ (p2). therapists became discouraged and felt that lack of conviction about the efficacy of therapy and lack of belief that therapy can improve the patient's quality of life negatively affected the quality of services they provided. 'their [the patients’] attitudes [towards the service] affect the services we are giving … they don't see the meaning of what we are doing’ (p8). discussion top ↑ the finding relating to the cultural belief that disability has a spiritual or mystic origin that was evident in this study corresponds with the findings of madden et al. (2013), the doh (2002), carroll et al. (2007) and bailey et al. (2000). all these studies noted that in many cultures people still believe that their disability or disease manifests itself as a result of wrongdoing against their ancestors, and are spiritual in origin. legg and penn (2013) also reported that patient explanations of the causes of aphasia after a stroke were strongly influenced by cultural beliefs. they report that patients with aphasia believed that misfortune or other spiritual causes resulted in them having a stroke and subsequently aphasia. this perception of the cause of the condition negatively affected this population's health seeking behaviour. in a study conducted by kassaha et al. (2012:695) in ghana regarding abuse of disabled children, these children were often killed based solely on the cultural belief that they were ‘supernatural’ or ‘cursed beings’. these studies support the perception of therapists in this study that patients’ cultural beliefs regarding their disability play an important role in the utilisation of, and belief in, the efficacy of rehabilitation. the establishment in this study that beliefs regarding aetiology of diseases affect health seeking behaviours correspond with the findings of pronyk et al. (2001). in his south african study on the health seeking behaviour of patients with tuberculosis, pronyk reported that the patients’ cultural beliefs regarding the aetiology of tuberculosis was a strong barrier to the utilisation of health care services. cultural beliefs regarding the causes of disability do not only affect the health seeking behaviour of patients living in rural areas, but also their conviction about the effectiveness of therapy services. therapists reported that if patients believed that their disability was caused by an ancestral curse, the patients would not comply with doing exercises because they would not be able to rationalise how it could remove the curse in order to heal them. this finding is resonated by madden et al. (2013) who reported that physiotherapists had very little success in treating patients with lower back pain in a very similar rural setting. one of the reasons given for this finding in this study, was because of the patients’ cultural beliefs regarding the cause of their back pain. it was noted that patients rarely adopted the suggested exercises or treatments since they did not believe in the efficacy of it, in light of their beliefs regarding the cause of their pain. therapists expressed the view that cultural expectations affected compliance with therapy. in order to relieve the patient's pain, the therapist has to ask the patient to make certain lifestyle changes or modify their behaviour, for example, to stop carrying heavy buckets of water on their heads. the cultural expectation in the zulu culture is that it is the female's responsibility to fetch and carry water (madden et al. 2013). madden also described similar findings in relation to females with back pain carrying heavy buckets of water on their heads. the role of the female in the traditional zulu culture is to serve her husband, and care and provide for her family. therapists found that patients simply could not comply with recommendations to stop carrying heavy 25 litres buckets on their heads due to cultural expectations (madden et al. 2013). even though cultural roles and beliefs could play a role in preventing lifestyle changes, socio-economic factors and structural poverty could also affect these decisions (bohrat & kanbur 2006). lack of access to running water might force a female to continue fetching water especially if the males are working in cities as migrant workers as it is often the case in rural areas (coovadia et al. 2009). madden et al. (2013) reported that physiotherapists in south africa were generally ill-trained and unprepared for the cultural and contextual factors that influence rehabilitation in rural areas. culture specific knowledge regarding the aetiology of disease in rural communities is vital in promoting rehabilitative services in these areas. the cultural beliefs of this specific community also impacted negatively on the perceived quality of rehabilitation provided by the therapists. in this rural district in south africa there is still a tremendous need for health education regarding the cause of disability where very few persons with disabilities are currently seeking rehabilitation. therapists do recognise that cultural beliefs regarding the aetiology of their disability are only one of many barriers to accessing rehabilitation services in this setting. the list of environmental barriers such as lack of infrastructure, the poor public transport system, high unemployment rates and poverty are all factors limiting accessibility (madden et al. 2013; maart et al. 2007). all therapists were aware of these factors and indicated that a community based rehabilitation (cbr) approach would be far more beneficial in meeting the needs of the community (who 2010). they did, however, note that staff shortages and lack of vehicles for therapists to do home and clinic visits were amongst the main barriers to implementing a more effective cbr programme. currently no new community health workers are being employed or trained in order to implement cbr in this rural district. only community caregivers were employed by the doh, and they were not trained or allowed to do cbr. in one of the rural hospitals eight therapists (four permanent and four community service therapists) are employed to service approximately 100 000 people over a surface area of 3000 square kilometres (kwa-zulu natal department of health [kzn doh] 2001b). this amounts to a therapist to patient ratio of 1 to 12 500, with each therapist being responsible for approximately 375 square kilometres of rural surface area. at this specific hospital therapists were aware of one community health worker that was still employed by the hospital to cover all 3000 square kilometres – and this person was also blind. because of the large distances that have to be covered in order to provide an effective cbr service, more trained staff and community health workers as well as vehicles that can accommodate rural terrain will be beneficial. stigmatisation of persons with physical disabilities is well-documented (bagenstos 2000; mcmaugh 2011; tyrrell et al. 2010; wang & dovidio 2011). according to bagenstos, society has historically discriminated against persons with disabilities based on their ‘abnormal’ appearance. in this study, therapists identified that stigmatisation of persons with disabilities made it very difficult for these patients to obtain transport to attend therapy. the prejudice against persons with disabilities in this study also seemed to be largely related to the fact that they looked different and as a result the cultural belief that a person was ‘bewitched’. accessibility and lack of transport is a major barrier to the utilisation of medical services in rural communities (gallagher et al. 2011; goins et al. 2005; gordon 2009; maart et al. 2007) and in this study therapists specifically mentioned that people would not allow persons with disabilities to make use of public transport due to the stigma. in some of the communities, persons with disabilities would be allowed onto the taxi, but would have to pay double if they had a wheelchair or even an assistive device. therapists mentioned that the ability to pay the extra fee sometimes stopped patients from returning for therapy; especially mothers of children with cerebral palsy would simply not even be allowed into an empty taxi. according to the therapists, persons with physical disabilities were more stigmatised than those with visual or mental impairments. this is, however, an area that could be explored in more depth. persons with disabilities living in rural areas are doubly disadvantaged with regards to their ability to access rehabilitation services. the geographical as well as the attitudinal environment (who 2001) were barriers to them accessing rehabilitation services. more importantly, re-engineering of primary health care (phc) should ideally include a policy shift by doh towards structural and intersectoral support for community based rehabilitation (who 2010). such support would release therapists from hospitals to work at the coalface in people's lived environments. it would also include the development of a cadre of rehabilitation community workers to deliver home based services under the direction of rehabilitation therapists. therapists also reported that patients usually deteriorated at home once they were discharged from the hospital. they attributed the patient's deterioration to the cultural belief that a person with a disability could not contribute to the household and was not worthy of care and limited financial resources. this finding directly contradicts recent disability literature which states that persons with disabilities are valued as a result of their potential to qualify for disability grants of approximately r1200 per month (leclerec-madlala 2006; penn 2014). the fact that the therapists discussed this issue could either indicate that not all rural families are aware of disability grants, or possibly cannot access it due to problems with the system or lack of personal identification documents (id) (penn 2014; social assistance act 2004). according to the social assistance act (2004) an id is a requirement for applying for a disability grant. therapists did mention that they would encourage persons with disabilities to apply for a disability grant, but that obtaining an id is a challenge when people have to travel to the nearest department of home affairs to apply for it. poverty and a poor public transport system are noted in the literature as some of the main reasons why patients do not return for follow-up visits (gallagher et al. 2011; maart et al. 2007). as discussed earlier, this problem could potentially be addressed if basic resources such as transport which could accommodate rural terrain was available for therapists to provide a service that is more aligned with a cbr approach. an interesting observation that could be unique to the south african context was that patients were resistant to being treated by therapists from their own culture and race. this finding is contrary to the rural health strategy for south africa (doh 2006) which advocates the training of local people to strengthen the health care workforce in rural areas. the therapists in this study reported that patients believed that only white people could be educated enough to be doctors and therapists and that their ‘own people’ were not seen as competent. this belief could also be unique to the area since most of the rural hospitals in this district originated as ‘missionary hospitals’ that were predominantly staffed by european volunteers (kzn doh 2001a; 2001b). therapists also felt that the quality of their rehabilitation services was negatively impacted on by the cultural beliefs of their patients. they felt that since some of them had to make use of translators who would change what they said to fit the cultural context, they could not educate or counsel patients sufficiently. the value of using formally trained interpreters in cross cultural encounters is reiterated by campinha-bacote (2002). this finding is resonated by carroll et al. (2007:362) who notes that it is often difficult to provide health care services making use of translators as the ‘… translation may not fully represent cross-cultural differences in conceptualizations of health’. recommendations top ↑ therapists intending to follow a career in rural health care – or even ‘community service therapists’ – should be aware and sensitive to the cultural beliefs that could potentially have an impact on their services. currently rehabilitation therapists working in this area try and do ‘roadshows’. these events serve to educate the community about the causes of disability and to raise awareness about the importance of rehabilitation. if therapists are more aware of how cultural beliefs could affect the utilisation of their services, they could potentially assist in changing cultural perceptions about health. unfortunately as a result of staff shortages in rural areas this does not happen often. it is vital to advocate for the attraction and retention of more rehabilitation therapists to work in rural areas in order to facilitate a more effective cbr approach. decentralisation of rehabilitation services will improve the utilisation of services by removing some of the structural poverties which undoubtedly affect access to rehabilitation. limitations of the study the views explored in this study are only representative of the rehabilitation therapists working in rural hospitals and not necessarily the only reason for poor utilisation of rehabilitation services, but are in their perception a major contributing factor in this specific area. conclusion top ↑ in this study from the therapists’ perspective, the cultural beliefs regarding the aetiology of disease and disability impacted negatively on the utilisation of rehabilitation services. this finding provides valuable insight into the perceptions of the therapists working in this rural community. their perceptions on how cultural beliefs affect the utilisation of their services can also assist to inform education and health promotion programmes specifically in a rural south african context. it is the responsibility of all health care providers to ensure that they become culturally aware, knowledgeable and competent in order to provide the best possible services that meet the needs of the intended community. it is also a call to institutions of higher education to better prepare undergraduate health care professionals for working in the rural context as well as the national doh to consider providing the necessary human and structural resources which could assist therapists to follow a cbr approach and truly provide ‘health for all’. acknowledgements top ↑ this work is based on the research supported in part by the national research foundation (nrf) of south africa, grant (84336). any opinion, finding and conclusion or recommendation expressed in this material is that of the author(s) and the nrf does not accept any liability in this regard. competing interests the 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health component, world health organisation, geneva. who, 2011, world report on disability, world health organisation, geneva. abstract introduction research methods and design key findings and discussion strengths and limitations conclusion recommendations acknowledgements references about the author(s) zelna van niekerk department of human resource management, college of economic and management sciences, university of south africa, pretoria, south africa mbulaheni o. maguvhe department of inclusive education, college of education, university of south africa, pretoria, south africa meahabo d. magano department of educational psychology, college of education, university of south africa, pretoria, south africa citation van niekerk, z., maguvhe, m.o. & magano, m.d., 2022, ‘how education, training and development support the wellness of employees with disabilities’, african journal of disability 11(0), a882. https://doi.org/10.4102/ajod.v11i0.882 original research how education, training and development support the wellness of employees with disabilities zelna van niekerk, mbulaheni o. maguvhe, meahabo d. magano received: 19 apr. 2021; accepted: 01 mar. 2022; published: 29 apr. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: existing wellness theories do not consider the unique needs of persons with disabilities. the lack of recognition of these needs in traditional wellness theories encouraged the researchers to develop a wellness framework for employees with disabilities (ewds) to influence their wellness positively. objective: the aim of the study was to identify the wellness experiences of ewds and explore how education, training and development can contribute towards the employees’ wellness. method: the qualitative study entailed semi-structured interviews with ewds identified through snowball sampling. the study used the six-dimensional model of wellness that bill hettler developed in 1976 as a departure point to a holistic approach referring to social, intellectual, spiritual, physical, emotional and occupational wellness. the data collected was analysed through content analysis. results: the study found that ewds experience various workplace challenges as limited or no changes have been made to accommodate their specific needs. this then has a negative influence on their wellness. their wellness diminishes as they attempt to cope with circumstances rather than request assistance. they recognised development needs in all the wellness dimensions explored. employers and other stakeholders, including customers, colleagues and the communities they serve, need development and capacity building on disability matters to ensure equal opportunities for ewds. conclusion: the study resulted in a wellness framework for ewds identifying the education, training and development needs that will contribute to their wellness. keywords: development; disability; education; employees with disabilities; employers; equality; training; wellness. introduction social value in 2016, the international labour organization (ilo) reported that persons with disabilities (pwds) represented half a billion of the world population (ilo 2016). this while the african union (au) in 2020 reported that nearly 1 in 10 africans lives with one or another disability (african union 2020), and in south africa in 2019, 6.6% of the population older than 5 years were considered to have a disability (statssa 2019). the world health organization (who) (2016) also stressed that pwds still experience unequal treatment in many instances including health care services. for example, ‘women with disabilities receive less screening for breast and cervical cancer than women without disabilities’, and ‘adolescents and adults with disabilities are more likely to be excluded from sex education programmes’ (who 2016:1); this on the continent with the highest hiv infection rate. this research study aimed to consider the current wellness levels experienced by employees with disabilities (ewds) and how education, training and development (etd) can contribute to it. therefore, the social value of this study lies in its potential to improve the wellness of ewds in all the wellness dimensions identified by hettler (national wellness institute 2014), which includes their social, intellectual, spiritual, physical, emotional and occupational wellness. an improvement of the holistic wellness of ewds will result in an improvement in their general quality of life and their relationships (marx 2015). wellness in the workplace encompasses more than just arranging wellness initiatives. it also entails supporting employees and ewds in building and maintaining relationships in the workplace and outside (marx 2015; walsh 2016). since the first democratic election in 1994, various pieces of legislation, white papers and guidelines on disability were developed; however, the progress with the implementation and towards reaching the set targets have been disappointing. considering this, it is understandable that the commission for employment equity (cee) indicated the following in its 2018–2019 annual report: [i]t is noticeable from the trend analysis on the representation of persons with disabilities over the past three years that little progress is being made in increasing the representation of persons with disabilities in the workforce across all occupational levels. (cee 2019:60) figure 1 will give an overview of the employment levels of pwds in south africa. a target of 2% for the employment of pwds was set in the white paper on affirmative action 1998, but by 2020, the national level of employment of pwds was only 1.3% (cee 2021): figure 1: employment levels for persons with disabilities (synthesised from employment equity reports released annually by the commission for employment equity). with this lack of progress in mind, the scientific value of the study will now be discussed. scientific value according to the who (2016), the fact that pwds still lack life and work skills is common all over the world. this lack of skills in turn has a negative impact on their wellness experiences, which are further relegated by the fact that their families, society and employers need development on how best to interact with pwds. this indicates the need for a framework to help address the negative impact that limited skills have on the wellness of ewds. this inequality and discrimination negatively influence their wellness experiences, which is further relegated by the fact that their families, society, and employers do not know how to interact with them. (un 2019; van niekerk & van der merwe 2013). to understand the variables in the study as a background to interpreting the personal experiences of the sample, various literary sources were studied during the literature review phase. it was important to acknowledge that pwds are still excluded from society and the labour market (un 2015; who 2016). the study considered various existing theories and models of both disability and wellness in the existing body of knowledge, but the wellness models do not acknowledge the unique needs of ewds (goss 2011; van niekerk & van der merwe 2013). the different disability and wellness models will now be discussed shortly as part of the theoretical framework for the study. conceptual framework to ensure a common understanding of the key concepts that formed part of the study in question, it will now be introduced before the relationships of these concepts with each other and the theory available will be investigated in more detail in the theoretical framework. disability in the employment services act 4 of 2014, pwds are defined as [p]ersons who have long-term physical, mental, intellectual, or sensory impairment, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others. (richardson 2017; republic of south africa (rsa), department of labour 2014a:4). this definition is the same as the definition of the un per the convention on the rights of persons with disabilities (crpd) (un 2006:4), which was upheld in the united nations disability inclusion strategy (undis) (un 2019). in understanding disability in the workplace, it is also important to understand the types and causes of disability. persons with disabilities include persons with physical, intellectual, mental or sensory disabilities (services seta 2006), some of which can be caused by environmental issues such as lead in drinking water (united states of america (usa) environmental protection agency (epa) 2015). crime and the abuse of women and children are common in south africa and africa, which, with poverty and illiteracy, are considered prevalent societal factors that can result in disability. the lack of medical care and access to educational programmes further increases the occurrence of disability in african countries (parrotte 2015; who 2015). lifestyle choices can also result in disability as high levels of obesity, alcohol abuse and other non-communicable diseases caused by lifestyle choices contribute to illness and disability (rsa, department of social development (dsd), department of women, children and persons with disabilities and united nations international children’s emergency fund – unicef 2012; tomer 2016). not only does obesity cause medical conditions like heart disease, but physically it also results in musculoskeletal strain, whilst alcohol abuse during pregnancy results in infants with disabilities because of foetal alcohol syndrome (van niekerk 2018; who 2016). disabilities can also be hereditary or caused by accidents – in the usa work accidents are the major cause of disability, whilst in south africa (who 2016) road accidents lead to high levels of permanent disability. wellness according to the who’s constitution, wellness is ‘physical, mental, and social well-being, not merely the absence of disease’ (who 2015:2), whilst the national wellness institute refers to wellness as achieving self-actualisation and a full life (hettler 1976; national wellness institute 2014). according to dillette, douglas and andrzejewski (2021), dunn, in 1959, asserted that holistic wellness refers to four dimensions which include body, mind, spirit and environment. as the researcher in this study focused on the wellness of ewds, it was also important to consider how their work, the workplace and their growth influence their holistic wellness. according to hettler and the national wellness institute, the effort by a person to achieve whole-person wellness is in line with maslow’s theory on motivation which considers self-actualisation as the optimal level of meeting your needs (maslow 1943; national wellness institute 2014). theoretical framework the following discussion will provide more information on these concepts and its relationship theory available on these key concepts and contextualise these concepts in relation to the research study. disability model in this study, the researcher used the bio-psycho-social (bps) model of disability as the lens for viewing pwds and ewds. this approach allowed the researcher to consider all aspects of disability, from the person and the type of disability to the impact of society and the environment on them and their experiences (krahn et al. 2006). waddell and aylward (2010) acknowledged that although disability is clearly linked to health, it also has social and psychological components that also play major roles in the wellness of pwds (shakespeare, watson & alghaib 2017; waddell & aylward 2010). therefore, as a holistic model, it considers the impact of physical (biological or environmental) and emotional (psycho) factors, as well as the impact of society on pwds (waddell & aylward 2010; shakespeare et al. 2017). in summary, the bps is accurately described by hartley: [s]ickness and disability are best overcome by an appropriate combination of healthcare, rehabilitation, personal effort and social or work adjustments. there is a coherent theory behind this assessment. (hartley 2012) wellness model the researcher found hettler’s (1976) six-dimensional model of wellness most suitable as an all-encompassing wellness model. in 1976, hettler designed his six-dimensional model, which considers the ‘whole’ person and how these dimensions contribute to their work and home life. although various wellness models exist, none of them refer to the specific needs of pwds (goss 2011). by using this model as the basis of the study, the researcher considered the holistic wellness of participants. this model considers the physical, emotional, social, occupational, spiritual and intellectual dimensions of wellness and, in this specific study, its contribution to the holistic wellness of the employee with a disability. physical wellness covers the body of a human being and its optimum functionality without any hindrance. furthermore, one can use limbs and perform any duty to one’s satisfaction (hettler 1976). for ewds, the physical wellness has some limitations. emotional wellness demonstrates the way an individual attains adequate fulfilment emotionally. one’s effective wellbeing is developed in such a way that one can handle any situation and accept any condition in a mature way. social wellness demonstrates the ability to interact with other people in a healthy and acceptable way without any anti-social behaviour. occupational wellness is attained when one’s optimum development in any career is self-actualised. in addition, one can demonstrate competency, creativity and resilience in one’s career. spiritual wellness covers the belief system of an individual irrespective of one’s affiliation. spiritual wellness includes the ability to exist with other people with different belief systems, and one can accommodate them because of one’s maturity. the sixth wellness dimension is the intellectual wellness that recognises creative abilities in applying knowledge and skills either in academic settings, professional development and community life (hettler 1976). a practical example of the impact of disability on the six wellness dimensions can be seen in the following scenario. according to who (2016), pwds obtain limited education and job-related training because of prejudice and discrimination. this impacts on the intellectual development and wellness of pwds as well as their occupational wellness. such a situation also limits their career opportunities that directly impact on their income. this also has a negative impact on the emotional wellness of pwds as who (2016) found that financial and occupational stress result in depression. depression affects the social and spiritual wellness of people including pwds and subsequently their physical wellness as depression is seen as the most common secondary disability. this clearly indicates how interrelated all wellness dimensions are as indicated by hettler (1976). this allowed the researcher to address the aims of the study, from considering the wellness status of ewds to identifying the etd support offered to and needed by ewds and other role players, to develop an original wellness framework for ewds. disability and wellness persons with disabilities were found to consider wellness as good physical and emotional health with manageable and limited physical pain (oschwald & powers n.d.). it also refers to the level of independence pwds experience in their day-to-day living. it is the ability to do what you want even if in another way or with assistance and to make decisions for yourself (rsa, dsd 2015). in 2014, the un reported that more than 60% of african countries are still non-developed countries and subsequently have a lower quality of life and wellness (un 2014). this came into play in this research study, as the who in 2011 and 2016 reported that pwds have the highest levels of poverty in africa as well as the highest levels of health issues (who 2016). as mentioned above, disability is prevalent in south africa and africa. limited primary healthcare and poverty are not the only common causes of disability in africa. mining, which is common in africa, especially in south africa, increases acid mine-water poisoning. this is found where effluent or liquid waste (waste other than that from kitchens and toilets and produced by industries like the mining industry) flows into rivers and boreholes (oruko et al. 2020). furthermore, abuse and neglect of pwds are common practices in africa (african union 2014; rsa & presidency 2014; who 2016). however, initiatives for wellness of pwds are not limited to africa. internationally the un launched the world programme of action concerning disabled persons in 2015. this programme plans to address the plight of pwds worldwide to ensure better living conditions, quality of life and opportunities. the un also wants to prevent disabilities where possible or offer rehabilitation and reasonable accommodation where needed and thus ensure the well-being of pwds (un 2015). this is not only in line with wellness through ‘self-actualisation’ as mentioned above but also with the disability and wellness theories used as a lens for this study. aims and objectives the aim of this study was to explore the experiences of ewds in terms of all wellness dimensions and to determine what etd interventions organisations can offer ewds and other stakeholders to improve the holistic wellness of ewds. research methods and design study design the interrelated research questions considered in this study are as follows: what kind of education training and development support is needed in organisations to improve the wellness of ewds? how should this be contained in a wellness framework for ewds? research paradigm as the research study concentrated on the experiences of pwds and their wellness experiences in the workplace, it was situated in the interpretivist paradigm (cohen, manion & morrison 2014). this paradigm also focuses on these experiences within set boundaries (cohen et al. 2014). this correlates with the fact that this study applied a phenomenological research approach considering the wellness experiences of a specific group, namely pwds, within a specific environment – the workplace – and supported by workplace training and development. however, it still allowed the researcher to study different interpretations of these experiences by interviewing different participants in different organisations and different industries (cohen et al. 2014; lincoln & guba 1985). all the above linked directly to the qualitative research methodology used in this study, focusing on the personal experiences of each participant in their own environment (creswell 2014; pugsley 2010). qualitative research in this case improved the understanding of a social phenomenon – the wellness of ewds; however, the findings cannot be generalised (creswell 2014). study population and sampling strategy the study population consisted of pwds employed in seven companies. as the population of ewds is small and disability status is confidential, the primary researcher communicated with gatekeepers in each organisation who forwarded an introduction letter to ewds. snowball referencing as a non-intrusive sampling method (baltar & brunet 2012) was suitable to the study as it placed no pressure on ewds to participate in the study. data collection the data were collected by administering semi-structured interviews to 12 employees with different physical and sensory disabilities pre-coronavirus disease 2019 (covid-19), as it allowed the researcher to obtain responses to standard questions and to gather rich, unanticipated data from responses to the open questions. interviews were considered suitable for qualitative, phenomenological studies as they provide in-depth data on how a participant experiences certain circumstance. it also allows participants the opportunity to have questions repeated or clarified, whilst interviewers can ask follow-up questions to clarify responses received from participants (creswell 2014; wiersema & jurs 2009). in this study, the semi-structured interview schedule with 15 open-ended questions was based on the six dimensions of hettler’s model of wellness (1976) but focused specifically on the experiences of the ewds and on how etd can improve these experiences. data analysis data analysis is not a simplistic evaluation of the data collected; in this qualitative study, it was an exhaustive process of content analyses creating a better understanding of the phenomenon studied (cohen et al. 2014; creswell 2014). the researcher also recorded the interviews, and afterwards, it was transcribed verbatim before the data was coded by the researcher and an independent co-coder using software to code known as atlas ti. during the content analysis process, meaning was deducted (potter & hepburn 2008) and collated, thereby forming the basis for all findings and conclusions of the study. ethical considerations the researcher took extra care in ensuring ethical research practices as pwds are a vulnerable group (rsa, dol 2014a; un 2006). firstly, the researcher obtained ethical clearance from the college of education research ethics committee (reference number: 2015/09/16/8423369/ 21/mc) and then from the employer-wide unisa research permission sub-committee of srihdc (reference number: 2016_rpsc_003). permission was obtained from the relevant organisations to conduct the research and attain the details of the relevant gatekeeper. the researcher also obtained informed consent from each participant, and it was made clear that they could withdraw at any time with no penalty. the researcher offered anonymity to participants, and therefore the researcher undertook to use pseudonyms, for instance, participant a and so forth during the transcription, coding and the reporting of the findings of the study in any subsequent publications. the data furthermore informed the development of the wellness framework for ewds, as well as the subsequent implementation model. during the data analyses and this development process, existing academic sources were also considered in supporting or negating the findings (creswell 2014; potter & hepburn 2008). key findings and discussion the themes identified are reported and discussed in more detail. verbatim quotes from the transcribed interviews are included using pseudonyms. the findings discussed are based on the codes and themes identified by the researcher and the co-coder and the correlations found unless otherwise indicated. theme 1: to improve the wellness of employees with disabilities, employers need to offer disability-specific education, training and developmental support the participants identified three different categories of developmental needs. these were the developmental needs of the individual (the ewd), followed by those of the organisation and, finally, the needs of the wider society. category 1: personalised education, training and development is required for employees with disabilities education, training and development: most of the participants indicated their need for formal education. participant a stated the following: ‘like now, i need to look, i need to grow, i need to see myself somewhere … if i can see myself having a degree … you need to see a growth in your life.’ whilst participant b felt that: ‘i just need that support …, the inspiration that i need, and motivation … for me to continue studying ….’ this is in line with kamal et al. (2012) who stress that full participation of employees in the workplace is dependent on their development. a lack thereof will have a negative impact on their self-image resulting in feelings of inferiority and even stress and depression (bam & ronnie 2019; kamal et al. 2012; kwarbai & akinpelu 2016). another personal developmental need identified by participants was the training to help them function optimally in the workplace. although many participants stressed the need for induction training, the need encompassed more; it also referred to task-specific skills. for participant b, orientation on the new premises of his organisation was very important: ‘… when we get there, they should also organise some … orientation there, … to show us around, how that building operate[s] ….’ participant d stressed that he had no formal training on his specific tasks: ‘i was always like taught, “watch and learn” … information is like half floating around, … trial and error, always have to assume, “is this the right thing to do? is this right what i’m doing?”’ to ensure the etd of ewds, organisations will have to change their view regarding ewds and what they believe these employees can do (bam & ronnie 2019). often, they are employed only to meet employment equity targets with little future investment in their development as employees (rsa, dol 2014a; van niekerk & van der merwe 2013). career development in times of economic downturn, as is currently being experienced in south africa and globally, it is common for training and development to be minimised (erasmus et al. 2019). then the value of on-the-job training, such as formalised programmes involving job rotation, or mentoring and coaching, cannot be underestimated in such circumstances (erasmus et al. 2019). structured workplace career development programmes and plans (erasmus et al. 2019) also have an important role to play in employee development. career plans have an important role in all employee development and for ewds, like all other employees, it gives them a ‘map’ of where they are going and what to do to grow (al zidjaly 2016; erasmus et al. 2019). both participants e and j mentioned how the lack of career management and progression demotivated them and had a negative impact on their emotional and occupational wellness: participant e: ‘i’m now nearly 6 years as [position] … it’s just too long, because i’m now at a plateau. you can’t be a [position] so long, because it is tough, and it’s emotionally very, very tough ….’ and participant j: ‘i did apply for the director’s job … i didn’t get it, and, afterwards, i was told that it was a very good interview, but the fact that i couldn’t drive was one of the factors that … counted against me. i wasn’t very impressed ….’ disability and coping skills in 2016, the who stated that ‘[d]epression is the leading cause of [mental] disability worldwide’ (who 2016:1) preventing people from functioning effectively. it is also the most common secondary disability (a secondary condition to other disabilities), as pwds face various physical and emotional barriers as well as prejudice (falvo 2014). both participants g and l referred to circumstances in the workplace that negatively affected their emotional wellness: participant g: ‘no, i feel that the process [incapacity process] i went through, i wouldn’t want somebody else to go through the same process. emotionally, and there was a stage where, … i was battling to accept it. i actually went through depression.’ and participant l: ‘it was far from home [place of transfer], so there was no one i know that side, and it became a problem for me to …, i am still … staying alone, coping as i can, but, when it comes to those kind of stuff, emotional stuff, … i don’t have anyone to talk to, because i am going straight home, just close the door, and sleep and say, “hey, that day has passed. just start a new day. these things happen.”’ in addition, most of the participants stressed that they need personal development to develop coping skills in terms of their physical and emotional challenges, including knowledge of their rights in the workplace and counselling services. they felt that such skills and reasonable accommodation measures would go a long way in improving their physical, emotional, spiritual and occupational wellness. for instance, reasonable accommodation makes allowances for a person’s personal circumstances resulting from their disability (as in the last quote above, the need to remain or move with their family) (rsa, dol 2015; rsa, dsd 2015). through reasonable accommodation (modifications or adjustments to a job to accommodate the needs of ewds), the employer can reduce some of the stress factors in the work environment, enabling ewds to cope better in the workplace (rsa, dol 2014b). counselling would also serve as personal development for ewds as the need arises. various participants stressed the importance of counselling services – not only to help them cope with disability but also with all the changes and challenges experienced. participant e specified the value of counselling: ‘such a big organisation like this should have something. you know, they do at the clinic and so on, the aids clinic … but they should have supporters though. but it’s not so … specifically aimed at disability, but in general.’ finally, it also became evident that ewds need development to better understand their rights and what reasonable accommodation entails. both the researcher and co-coder found that the participants initially stressed that they experience high levels of wellness in all dimensions, whilst as the interviews continued, it became clear that these initial responses were because of a halo effect based on their gratitude of being employed. this also became clear in what participants were willing to accept or endure in the workplace although, in ‘normal’ circumstances, these measures would be considered a breach of human rights as is clear in the following remark by participant a: ‘look, there’s a toilet … on the 27th floor …, [a] disabled toilet that i am taking a lift and going there. it is wide open, … i think everything is coming perfect.’ this employee showed that he is willing and even thankful to take a lift and ‘travel’ through various floors and quite a distance to an accessible restroom. however, he then also acknowledged that in the case of a power failure or load shedding, he would be left stranded with no access to such or in effect, any restroom. category 2: education, training and development is also required for organisations the participants referred to the need for line managers, wellness managers and all employees in an organisation to be trained on disability issues. management development a common need identified by most participants was the need for managers to receive disability training, not limited to sensitisation but also on reasonable accommodation. the participants stressed that managers tend to forget about the practical and psychological impacts of their decisions on ewds. as mentioned before, participant g was relocated away from his family: ‘it happens that i fell down and then hurt my back …it happened during the easter period. …the person who was in charge by that time, he questioned me whether it was true or not. …he went through, ‘why didn’t you do this at this time?’ i mean, i was hurt. i felt that, because it seems like i was maybe telling [a] lie, even though i came with the doctor’s thing. [now] i am scared to say, “can i go and see a doctor? i am scared that it will be questioned.”’ another participant with a physical impairment indicated that during the relocation of her organisation, public transport no longer dropped employees off at the offices. the participant was left waiting for any willing colleague to transport her the last stretch to the office: ‘… i just get off from the taxi and just stand at the corner, … everybody is just picking me up. one day i laugh at, aah, because when i was standing there about four cars of my colleagues … [laughing], my manager just stood in front ….’ this showed that the participant’s manager was or became aware of the situation, but even at the time of the research interview the situation had not yet been addressed. although the toolkit for employers in the private sector indicates that employers are not expected to provide transport for ewds, unless it provides transport to all employees (south african human rights commission 2015); in this case, the change and resulting challenge were because of a decision made by the employer. better trained managers would approach these situations differently and make informed decisions that do not impact negatively on the wellness of employees (mellor & webster 2013). for instance, in the last example, managers trained and educated in disability matters could have foreseen and addressed this challenge during the planning of the relocation or as soon as they became aware of it and realised the need for reasonable accommodation. the technical assistance guide on the employment of pwds (tag) (rsa, dol 2017) stresses that supervisors and managers also need training and education on the performance management of ewds to ensure that they are assessed only on the key functions of their positions. development of employees involved in health and wellness or diversity management these employees are the first point of access for both ewds and managers when they need assistance with disability issues. however, participant e indicated that after the traumatic event that left him disabled, there was limited professional support available to him or his family: ‘now, my question is, never, nobody ever went out and see if my wife was okay… i think the [executive] phoned her once, but nobody came out and said, “yes, are you alright?” and i always thought, “why did … such a big organisation, why don’t they have a social welfare looking after people like that?”’ according to marx (2015), employers also have a responsibility towards the families of employees in general and especially after suffering trauma. according to the latest public policy, employers should ensure that disability advocacy and expertise are available in organisations (rsa, dsd 2015). therefore, these employees need to understand the disability management process and speak with authority on relevant public and organisational policy as well as reasonable accommodation. participant g captured this in the following response: ‘…companies on a whole, they have to now try and accommodate people with disabilities with regards to work-wise and stuff like that, and there’s got to be an improvement with that ….’ whilst participant l indicated that: ‘… they can maybe employ someone who … can respond our same position … same as us … disabled like us … can do those things for us.’ organisational development the general lack of knowledge of disability and ‘disability etiquette’ by all employees was raised as an important developmental area to build relationships and interaction between ewds and other employees. participant a indicated that: ‘one thing remaining is the disability, but people should be taught how to treat people in a wheelchair. let’s say, how to treat people on disability ….’ whilst participant j indicated that other employees are: ‘… scared, and because they don’t know how to do it, they do it wrong, and then they feel bad, and they sort of just ignore the person or belittle him … i think people should be aware that a person with a disability does need some support … but not in a patronising way.’ the white paper on the rights of persons with disabilities (national disability policy) stresses that to address the discrimination against pwds in the workplace, employers and all employees need disability sensitisation (rsa, dsd 2015). organisational development also includes the mainstreaming of disability by ensuring that it is considered and included in all policies and procedures in an organisation (rsa, dol 2015). category 3: education, training and development for external stakeholders society: according to the who (2015, 2016), pwds are still the most disadvantaged group in society. this not only refers to prejudice but also challenges like accessibility to basic services and even public transport, or in the case of their own transport, a lack of suitable parking facilities. according to the national disability policy prejudice is: …the judgment or opinion that is formed without proper understanding or investigation, in a way that is biased, unfair, hurtful, and discriminatory. (rsa, dsd 2015:48) participant a indicated the following: ‘the municipality … now what is their aim? what are they willing to help us? look, you come to the [organisation] here. inside the building, there are disabled parkings … they can be able to access and move it easy to them … but then why is this not being done outside? i have seen two parkings in town as the whole cbd since i have drove … they cannot construct for taxis that loads people; they cannot construct for buses that carry people … when they think and do a bus for municipality that can be able to carry people with disability ….’ the south african government has acknowledged that there is still a great deal of discrimination against pwds when considering accessible services, buildings and transport (rsa, dsd 2015). according to the bill of rights in the south african constitution, nobody may be discriminated against based on their disability. persons with disabilities therefore have a right to be treated equally and fairly and not to be excluded from any activity or even premises based on their disability (rsa, department of justice and constitutional development 1996). therefore, their exclusion from accessible services, buildings and transport as mentioned above is considered discrimination. to address this and to ensure more equal opportunities for pwds, the government developed the national disability policy (rsa, dsd 2015). employers also have a responsibility to advocate the rights and needs of pwds to not only show support for their ewds but also to force government to address these needs. furthermore, through sensitisation sessions in communities, they can help overcome the prejudices towards pwds (rsa, dol 2015; who 2016). participant b observed that: ‘yes, but they also used to organise some session for disabled people like me and organise … children or kids from … schools to come here and meet us. then we … negotiate about … what is expected from disabled people, how to treat disabled people ….’ unfortunately, employers can also hinder the promotion of transformation towards pwds by showing a lack of acknowledgement of and clear support towards this previously disadvantaged group. to name but one example, an industry-leading auditing and consulting firm in south africa proudly reports on its transformation journey, specifically stating that it is ‘… committed to empowering south africa’s citizens and setting right the inequalities of the past through a sustainable transformation strategy that leaves no man – or woman – behind’ (2017). it only includes reference to progress made in terms of two previously disadvantaged groups, race and gender, with no reference to the third group, pwds (2020). this is still quite common, and although this does not necessarily mean there is no support for pwds or progress towards employing ewds, it does not remind communities of or advocate towards advancing pwds. service providers: employers should also ensure that they use service providers in their company that respects the rights of pwds and ensures their equal participation. to stress the importance hereof, employers can offer development opportunities to prospective service providers in terms of these rights and to sensitise them towards disability. two participants stressed contradicting experiences. participant i reported a positive experience: ‘yes, i think the company did play its part by giving me the opportunity to … expand my knowledge then, yes, they did … i did attend a lot of training and a lot of courses. it is always accessible.’ compared to an experience by participant d: ‘yes, so, … they did organise a medical session … but, they made a mistake of not considering us as disabled people, because the truck was parked down there, which was very distant for us. then there are also, up there, are staircases there, so … it was not accommodative that one.’ theme 2: a wellness framework for employees with disabilities must include the education, training and development needs unique to disability hettler developed the six-dimensional model of wellness in 1976 to acknowledge the influence of different factors on the wellness of a person (hettler 1976). this approach, for that reason, formed an integral part of the conceptual framework for this study as the researcher aimed to consider the wellness of ewds holistically. the research study showed that ewds, like everybody else, experience all six wellness dimensions, but with certain additional variables and, especially, stressors. as seen under theme 1, this study was able to identify various common variables and needs influencing the wellness of ewds and how etd can positively influence their wellness. theme 2 therefore naturally flowed from theme 1 into the wellness framework for ewds. this framework focuses on which etd interventions and support will make a positive contribution to the wellness of ewds. as was established before, ewds have different and unique needs and all relevant role players need to be trained and sensitised towards these needs. for ewds to enjoy improved wellness in all six wellness dimensions, the discrimination and prejudice that are still prevalent towards pwds, including ewds, need to be addressed (rsa, dol 2015; who 2016). this framework clearly identifies who needs what development to contribute to the wellness of ewds. the identification of these etd needs, and the role players involved stem from the data collected from research participants as analysed and discussed above. the relationships portrayed in this framework are in no way absolute as wellness is forever changing and its dimensions interdependent. the framework, for instance, stresses that to improve the social wellness of ewds, both the employees in question and the broader communities they function in, need development. employees with disabilities and pwds in general need to understand their role in their communities and what they can expect from other community members and the government to ensure their full participation in society. communities should receive training and education on how to interact with pwds and to help identify and address challenges that hinder this full participation (rsa, dol 2015; rsa, dsd 2015). figure 2 therefore displays the key concepts per dimension on which the ewds or any other stakeholder, as specified, need etd to address the wellness challenges experienced by ewds. these wellness challenges can be found in their physical, emotional, social, occupational, intellectual and spiritual lives and, if not addressed, will lead to negative influences in the specific dimension of wellness and in the holistic wellness of a person. the unaddressed challenges will also impact on other people like their family, colleagues or community and spiritual stakeholders. the framework therefore attempts to best portray the findings in this study and, although it cannot be generalised, it can be a guide to a better understanding of the wellness of ewds. figure 2: wellness framework for employees with disabilities. strengths and limitations it is, however, of the utmost importance to note that people may be at different points in their wellness journey, and therefore, not all ewds will need all training identified and employers must therefore use this as a guideline to consider every employee’s individual needs and circumstances. conclusion the study led to the following conclusions in terms of the research aim, question and themes discussed in this article: in line with the research aim for this study, ewds shared their own wellness experiences in the workplace especially thankful to be employed but acknowledging the need to be developed in all wellness dimensions. furthermore, the study also identified various other areas where managers, colleagues, society and other stakeholders need capacity etd to positively contribute to the holistic wellness of ewds. this study considered wellness for ewds. two themes identified through content analysis after qualitative research interviews led to a proposed framework that can assist employers in developing all role players, including ewds, to contribute to their physical, emotional, social, occupational, intellectual and spiritual dimensions of wellness. as these interrelated dimensions improve, so will the holistic wellness of ewds. recommendations based on the above discussion and findings, the following recommendations are made: employers should actively ensure that ewds are exposed to etd opportunities that will address the discrimination and lack of development the pwds have been exposed to. employers should also offer opportunities to all role players to contribute to all wellness dimensions experienced by ewds. the etd interventions offered by employers should help both ewds and managers understand disability legislation, rights and concepts like a reasonable accommodation. employers should offer development opportunities within and outside the workplace to create disability awareness and to promote the rights of ewds, including their relationships with service providers and the wider communities. all role players, including employers, community leaders, government and pwds, need to actively pursue the promotion and enforcement of all new disability-related public policies and legislation declared since 2014. public policy measures and disability in general should be included in organisational policies and operational plans, whilst the organisation should actively pursue equality for ewds inside and all pwds outside the organisation. more research should be done on the wellness of ewds and input from employers should also be considered. employees with disabilities must become their own biggest champions by identifying and knowing their own needs, rights and – through increased participation – other challenges. on a more practical level, employers should take all reasonable steps to address the challenges ewds experience in their workspace. employers will need to ensure that facilities like accessible restrooms are readily available to ewds or make formal arrangements to ensure that ewds reach their office safely, especially where alternatives like public transport are not available. employers need to develop an all-encompassing disability policy that includes the process for ewds to apply for reasonable accommodation. it would be suitable for such a policy to provide sourcing expert inputs in considering these applications. acknowledgements the authors would like to acknowledge and thank dr e e olakanmi who acted as co-coder during the research data analyses. competing interests the authors have declared that no competing interest exists. authors’ contributions z.v.n. conceived the original idea, identified the research sample, carried out the experiment and wrote the manuscript with support from o.m.m. and m.d.m. who both supervised the project. funding information this research received no specific 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common health problems, royal society of medicine press ltd., london. walsh, f., 2016, strengthening family resilience, 3rd edn., guilford publications, new york, ny. wiersema, w. & jurs, s.g., 2009, research methods in education, 8th edn., allyn and bacon, new york, ny. world health organization (who), 2015, disability impairments, viewed 16 november 2015, from http://www.who.int/mediacentre/news/releases/2015/. world health organization (who), 2016, disability and health fact sheet, viewed 06 january 2017, from http://www.who.int/mediacentre/factsheets/fs352/en/. abstract introduction study context theoretical framework method results discussion study limitations conclusion and recommendations acknowledgements references appendix 1 about the author(s) maxwell p. opoku special education department, college of education, united arab emirates university, al-ain, united arab emirates faculty of education, university of tasmania, launceston, australia citation opoku, m.p., 2022, ‘special educators’ intentions towards supporting practice of inclusive education for students with disabilities in secondary schools in ghana’, african journal of disability 11(0), a875. https://doi.org/10.4102/ajod.v11i0.875 original research special educators’ intentions towards supporting practice of inclusive education for students with disabilities in secondary schools in ghana maxwell p. opoku received: 06 apr. 2021; accepted: 06 feb. 2022; published: 31 mar. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: although teacher training institutions have introduced courses in inclusive education to equip teachers with the necessary pedagogical skills to teach in diverse classrooms, it has been argued that the services of special educators are essential when it comes to teaching students with disabilities in regular classrooms. unfortunately, there is scant literature on the views of special educators regarding the enactment of inclusive education in sub-saharan african countries, such as ghana. objective: in an effort towards promoting inclusive education in ghana, there has been deployment of special educators across ghana to supervise the implementation of inclusive education in schools. the purpose of this study was to explore the intentions of special educators towards supporting teachers to teach students with disabilities in secondary schools. method: ajzen’s theory of planned behaviour guided the development of interview guide for data collection for this qualitative study. twelve special educators were purposively selected and interviewed from five districts in ghana. results: the participants expressed their unpreparedness to work in secondary schools because of multiple factors, such as their job description, resistance from teachers, and inadequate teaching and learning materials. conclusion: this study concludes on the need for policymakers to reconsider the deployment of special educators to cluster of schools or geographical areas in order to supervise the education of children with disabilities. keywords: inclusion; teachers; special educators; ghana; secondary schools. introduction the contribution of special educators towards implementation of inclusive education cannot be overemphasised. special educators are functional leaders in schools who supervise the practice of inclusive education and promote the well-being of all students, including students with disabilities (angelides, antoniou & charalambous 2010; liasidou & svensson 2014; maher 2018; poon-mcbrayer & wong 2013; struyve et al. 2018). for instance, special educators collaborate with classroom teachers to identify the needs, strengths and weaknesses of students with disabilities, and the best practices that promote the teaching of these students (devecchi et al. 2012; maher 2018; whalley 2018). all these processes are documented in the individualised education plan of students, prepared by special educators, which is a reference source for teachers and teaching aides or assistants (tas) who are recruited to assist students with disabilities in the classroom. while there are much literature on the contribution of special educators to the successful implementation of inclusive education in advanced countries, such as australia, canada and the usa (devecchi et al. 2012; hedegaard-soerensen, jensen & tofteng 2018; lyons, thompson & timmons 2016; sharma & salend 2016; whalley 2018), there are scant literature on their contribution in developing countries, such as ghana. inclusive education is defined narrowly as creating opportunities for students with disabilities to participate in regular schools that are in their local community (sharma et al. 2017). globally, there are still barriers to the successful participation of students with disabilities in regular schools (see, for example, ainscow & sandill 2010; de boer et al. 2011; sharma et al. 2013, 2017). in particular, the inability of students with disabilities to participate in regular classroom activities has been attributed to a lack of skilled teachers (conrad & brown 2011; mckay 2016; pearce, gray & campbell-evans 2010; sharma et al. 2013). this has prompted discussion on the need for schools to have special educators in an effort to promote the participation of students with disabilities in regular classroom activities (liasidou & svensson 2014; whalley 2018). while special educators develop policies and learning plans for students with disabilities (angelides et al. 2010; liasidou & svensson 2014; poon-mcbrayer & wong 2013), teachers may provide more attention to developing lessons that take the needs of all students into consideration. once these arrangements are in place, it is likely that all students will participate effectively in classroom activities. although the presence of special educators in schools helps to promote an inclusive culture, a few studies conducted in secondary schools have reported a poor working relationship between teachers and special educators (al-natour et al. 2015). one of the core duties of special educators is to engage teachers regarding the learning needs of students with disabilities (devecchi et al. 2012; hedegaard-soerensen et al. 2018; lyons et al. 2016). however, studies have reported the inability of special educators to visit classrooms in order to ensure that students with disabilities are being provided with adequate learning services (al-natour et al. 2015; sharma & salend 2016). this is attributed to the enormous administrative duties that special educators perform, which confine them to the office and leave them unaware of developments in the classroom. in some instances, it has been reported that principals interfere with special educators in the performance of their duties. for example, special educators are not provided the necessary financial resources or authority to execute their functions in the classroom (struyve et al. 2018; timberlake 2018). with the emphasis being made on academic excellence in especially secondary schools, very little funds are allocated to special educators to purchase learning materials required to support students with disabilities (maher & macbeth 2014). other previous studies have found that unavailability of funding for inclusive education explains the absence of teaching materials and recruitment of teacher aides who will support students with disabilities in the classroom (maher 2018; struyve et al. 2018; timberlake 2018; whalley 2018). it is evident that most of the above studies have relied on the accounts of special educators in terms of practices in primary schools. thus, the body of literature on the views of special educators regarding the implementation of inclusive education in secondary schools is very small. in the ghanaian context, there is scanty information on the contribution of special educators towards the implementation of inclusive. as part of larger projects, it has emerged that special educators are rarely available to support the teaching of students with disabilities (mantey 2017; pearce et al. 2010; poon-mcbrayer & wong 2013; sharma et al. 2013; singal et al. 2015). the study reported here forms part of a larger mixed project, which attempted to understand the intentions of stakeholders (teachers, school leaders and special educators) towards implementation of inclusive education for students with disabilities in secondary schools in ghana (opoku et al. 2020, 2021a, 2021b, 2021c). in the first phase of the study, teachers received less support from subjective norms to enable them to perform their teaching duties in the classroom (opoku et al. 2021b, 2021c). indeed, school leaders confirmed the inability of teachers to teach students with disabilities in secondary schools (opoku 2021). however, one thing that came out strongly was the absence of special educators in secondary schools as an impediment to implementation of inclusive education (opoku 2021). in an effort to practise inclusive education at all levels of education, there is a need to extend the literature and develop a comprehensive understanding of special educators’ perspectives on practices in secondary schools in ghana. the purpose of this study was to explore the practice and preparedness of special educators to support the implementation of inclusive education in secondary schools in ghana. this study may provide useful information on the current state of implementation of inclusive education in secondary schools, which may inform education reform and school practices. study context ghana is located in west africa with a population of about 30 million (ghana statistical service 2021). education is at the forefront of national development, as there are policies in place to ensure the participation of all persons in education (ministry of education 2016). as a result of systemic barriers present against individuals with disabilities, such as negative attitudes towards them and outright rejection of them in a society (anthony 2011; dogbe et al. 2019; opoku et al. 2017, 2019), policies have deliberately been put in place, such as implementation of inclusive education, to bridge the gap between individuals with disabilities and greater society (ministry of education 2016). inclusive education was formally introduced by the government of ghana at primary schools in selected districts during the 2003–2004 academic year (opoku et al. 2015, 2017). ghana’s endorsement of salamanca conference on special education (unesco 1994) and ratification of the un convention on the rights of persons with disabilities (uncrpd 2006) in 2012 are key milestones towards practising inclusive education. in 2015, an inclusive education policy document was formally promulgated to guide inclusive practices (republic of ghana 2015), which safeguards the right of students with disabilities to access all levels of education. accordingly, secondary schools are expected to have resources and personnel to support students with disabilities. the need to extent inclusive education to secondary schools has received local and international support. at the international level, the united nations (2015) has spearheaded campaigns for the alleviation of global poverty by 2030. in education, one of the cardinal pillars was the expansion of universal access to education from primary school to secondary school (united nations 2015). in response, the government of ghana has made secondary school education free in order to enable all students to have access. this move of the government has coincided with global and national attempts to practise inclusive education. this probably suggests that all students including students with disabilities will be able to have access to secondary school education. with the commitment of the government of ghana to instill inclusive education in the education system, the universities and colleges of education in ghana decided to introduce courses in special education in order to prepare teachers for inclusive practices (nketsia & saloviita 2013; nketsia, saloviita & gyimah 2016). also, a 4-year bachelor’s degree programme was introduced in special education at two public universities, and graduates from this programme are employed by the special education division (sped) as special educators to promote inclusive education in communities and schools. in every region and district, there is a special education coordinator who oversees the implementation of inclusive education. the special education coordinators also supervise the work of the special educators in the schools. the special educators (who perform similar roles to teacher aides) are expected to work alongside teachers, supporting students with disabilities in the classroom, in a number of schools. the practice of inclusive education appears to have stalled in ghana. this has been attributed to factors such as limited infrastructure (mantey 2017), inadequate teacher skills (anthony 2011; mprah et al. 2016; okyere, aldersey & lysaght 2019), and lack of teaching and learning materials in schools (opoku et al. 2015; singal et al. 2015) to enhance inclusive practices. although many studies have reported the barriers faced by schools in efforts to implement inclusive education in ghana (mprah et al. 2016; okyere et al. 2019; opoku et al. 2015), a few studies, as part of larger studies, have explored the perceptions of special educators regarding practising inclusive education. for example, it has been reported that teachers do not receive support from special educators deployed to assist them in the classroom (opoku et al. 2015). this was because of the limited number of special educators and the lack of funds available to them for transportation to various schools to assist teachers and students with disabilities (mprah et al. 2016). additionally, the author and colleagues found that special educators are not provided the required teaching and learning materials to enable them to perform their duties (opoku et al. 2015). consequently, they seem not to make any useful contribution to the practising of inclusive education. however, these studies were limited to the experiences of special educators in relation to supporting inclusive practices in primary schools. theoretical framework as a result of complexities surrounding the implementation of inclusive education (opoku et al. 2021c), ajzen’s (1991) theory of planned behaviour (tpb) was adopted as a useful framework to situate this study. the tpb is an extension of the theory of reasoned action, which explains intention to perform a behaviour as an outcome of two beliefs, namely behavioural and normative beliefs (ajzen & fishbein 1977). while behavioural beliefs refer to an individual’s assessment of the outcome of a given behaviour, normative beliefs refer to the support or approval an individual receives from social pressure in the execution of a function. however, ajzen challenged this two-belief proposition and suggested that there could be a third belief, known as control beliefs, which may have a direct or an indirect effect on behaviour (ajzen 1991, 2011). here, control beliefs refer to an individual’s confidence in his or her capacity to perform a behaviour. according to ajzen’s view, individuals’ capacity, as well as information accessible to them, could have an impact on them. consequently, ajzen (2011) argued that individual’s intention to perform a given behaviour is as a result of three interconnected beliefs, namely behavioural, normative and control beliefs. these related beliefs accumulate into determinants having an impact on intentions, which are the antecedent of behaviour. the related beliefs accumulate into determinants of intentions (cooke et al. 2016). for instance, the beliefs develop as follows: behavioural beliefs develop – attitude towards a behaviour; normative beliefs – subjective norms, and control beliefs – perceived behavioural control, referred to as self-efficacy in the previous inclusive education research (see ahmmed et al. 2014). in this study, the determinants of intentions are operationally defined. firstly, attitudes towards inclusive education are referred to as perceptions of other stakeholders, such as teachers and school leaders, towards practising inclusive education and the role of special educators. secondly, subjective norms are referred to as pressure or support from significant others to special educators towards the practice of inclusive education. here, consideration was given to assistance from school leaders, the sped and the government, and parents towards practising inclusive education. thirdly, self-efficacy refers to confidence and availability of resources to assist special educators and teachers. recently, studies on inclusive education have been adopting the tpb to assess intentions towards implementation of inclusive education (e.g. ahmmed, sharma & deppeler 2014; opoku et al. 2021c; yan & sin 2014). however, many of these studies were limited to assessment of teachers’ intentions only. as inclusive education requires a substantial contribution from diverse stakeholders, such as special educators, it is critical to develop a holistic understanding of the views of special educators, whose services have been argued as being pivotal in efforts to practise inclusive education (liasidou & svensson 2014; lyons et al. 2016; poon-mcbrayer & wong 2013). this study was guided by the following research question: ‘how prepared are special educators to support the implementation of inclusive education in secondary schools in ghana?’. method participants participants (n = 12) for this study included special educators recruited from five districts (ejisu-juaben municipal district, kumasi metropolis, mampong municipal district, obuasi municipal district and sekyere south district) in the most populous region of ghana, namely the ashanti region (ghana statistical service 2012). the study area was selected because it is one of the regions selected to pilot inclusive education in ghana. the inclusion criteria were as follows: (1) qualified special educator, (2) working in the study area and supervising implementation of inclusive education, and (3) consented to take part in this study. all the special educators (n = 15) deployed to support the implementation of inclusive education in the study areas were invited and those who agreed to take part in this study were recruited. all participants (n = 12) had at least a bachelor’s degree in special education (see table 1 for demographic details). while three participants were special educators playing supervisory and sensitisation roles, such as advocating for the inclusion of children with disabilities in regular classrooms (coordinators), of the special educators nine worked as teacher assistants (tas) who are also called resource teachers in ghana. table 1: demographic characteristics of participants. instrument an interview guide was developed based on components of the tpb. the interview guide covered the following areas: special educators’ intentions, attitudes towards inclusive education, support from significant others and self-efficacy of special educators towards practising inclusive education (see appendix 1). the interview guide was piloted on three graduate students with many years of experience teaching in inclusive schools. they provided feedback on the tool, which was discussed with other experts, whose views were incorporated into the final draft used for data collection. procedures of the 15 special educators in the region that were invited to take part in the study, three declined, because they were involved in other assignments outside the region at the time of data collection. arrangements were made for face-to-face interviews to be conducted with those who agreed to take part in the study. the interviews were conducted in offices or schools at a time convenient for the participants. data were collected over a 6-week period between january 2018 and february 2018. the duration of the interviews ranged from 30 min to 3 h. the objective of this study was explained to all participants, who signed written informed consent forms before the interviews. participants were informed of their right to withdraw from the study at any time without consequences. they were informed that their decision not to take part in the study would not affect their relationship with the author, the ghana education service (ges), or the sped. they were told that neither their identity nor the area of work would be disclosed to anyone outside the research team. descriptors and sequence of interviews were used to describe the study participants. while participants working in classrooms were referred to as tas, those working outside the classroom and supervising the implementation of inclusive education were called coordinators. all interviews were conducted in english by the author and were recorded using an audiotape, with permission from participants. data analysis the author transcribed the recorded interviews verbatim. after the transcription, the data were sent to the participants for review, so that they could advise if their responses had been captured correctly. of the 12 participants who were contacted by email, only five responded and made suggestions, which were incorporated in the final draft. phone calls were placed to the other participants to discuss key themes that emerged in the interviews, and they consented to their use in the study. as the study was guided by a theoretical framework, thematic analysis, following the guidelines proposed by braun and clark (2006), was performed. the steps followed were as follows: reading the transcripts to familiarise oneself with the data, coding, developing categories, theme mapping and development, and drafting the analysis. it is important to state here that the tpb variables were used as a priori themes (intentions, attitudes, subjective norms and self-efficacy). to expand, the author read the transcribed data several times and wrote down phrases to be used as codes. at this stage, a meeting was organised between the author and an expert in qualitative research to discuss the framework and categorisations of the data under the a priori themes. consensus was reached on the ideas brainstormed during the meeting. the author continued to code all the interviews and developed a coding framework, which was shared with the expert. they discussed the content and reached consensus on the framework. at this stage, the author categorised the codes with common descriptors and noted the similarities and differences between the participants. the descriptors were tabulated under the a priori themes (see figure 1). the themes and associated descriptors were transferred into a word document, and associated texts were extracted from the data. another meeting was held between the author and the expert to discuss the content. the author developed the story line and ran commentaries on the data. the first draft of analysis was shared with the expert for feedback, which was incorporated in the write-up. figure 1: summary of themes and categories. ethical considerations the study and its protocols were approved by the human research and ethics committee of the university of tasmania (reference number: h0016994). subsequent approvals were sought from the sped (a body supervising the implementation of inclusive education), directors of education and school principals. to elaborate, the sped provided the author a formal letter that was addressed to the regional director of education. the letter indicated the importance of the study and urged the director to support the author with data collection. the regional director provided the author another letter that was addressed to all district directors and principals, informing them about the study and encouraging them to participate in the study. after the necessary permissions had been granted, all special educators working in the region were invited to take part in the study. results participants revealed that limited provision has been made for them to work in secondary schools. participants related that they are unprepared to extend their services to secondary schools. the findings are organised under the following themes: attitudes, subjective norms, self-efficacy and intentions. attitudes participants related the attitudes of teachers towards inclusive education and the work of special educators. many participants (n = 8) said that teachers and principals hold positive attitude towards teaching students with disabilities in regular classrooms. although there are negative attitudes towards persons with disabilities in a society, participants who work in junior secondary schools revealed that principals and teachers include students with disabilities in their lessons. participants stated that many teachers have taken courses in special education during their pre-service training. these courses have exposed teachers to implementation of inclusive education and how to support students with disabilities to perform at their best: ‘oh, now the teachers understand that the students with learning disabilities are supposed to be in regular classrooms, and they support them even if i’m not around. i can say that we have made progress in this regard. when i came, i invested time and energy to educate the teachers so they accept every student.’ (female, teacher aide [ta]1, abena) ‘they are being accepted in schools. principals and class teachers now accept that they have to treat them as any other member of their class. what is left is the resources that is needed for smooth implementation of the program.’ (male, ta4, james) conversely, three participants who worked in an integrated unit (a special classroom in a regular school) related that some teachers still hold negative attitudes towards students with disabilities. they mentioned that those teachers do not want to accommodate students with disabilities in their lessons: ‘within our own compound [school], we can’t educate the teachers who are here. some of the teachers are not interested in education. they would tell you it’s not their duty to teach students with disabilities. they don’t listen to our advice.’ (female, ta10, gifty) ‘some have negative attitudes, because they have misconceptions about these children. i see how they talk to students with disabilities when they go close to them. when some of the children go to their classroom, they smack them with canes. this is a school community, and we are one, and they [students] are supposed to learn together.’ (male, ta12, nana) although half of the participants claimed that they have a cordial relationship with other staff members, three participants said that the regular classroom teachers have negative attitudes towards them. some participants revealed that their colleagues understand their work, while others said that their colleagues look down on their work: ‘they are happy with the work we are doing. some call me to ask why i’ve not been coming to their school if they have not been there for long. i remember not going to a school for some time, and the headmaster called and asked when i’m coming to his school to support the staff.’ (female, ta1, abena) ‘the teachers tell me my work is unnecessary, because with the implementation of inclusive education each school should get a resource teacher. as a person moving from school to school, they think what i’m doing is not all that necessary. unless we have resource teachers in all schools, they [teachers] won’t respect us. i will recommend at least two or three resource teachers for every school.’ (male, ta3, emma) almost all participants (n = 11) admitted that regular classroom teachers do not have the requisite skills to teach students with disabilities. although they have taken courses in special education, the courses are not sufficient for them to teach all students, as they are unable to include students with disabilities in the absence of tas: ‘but i think the semester course is not enough. our education system is all about examination. so the teachers passed examination and forget everything they have been taught. this is not enough if we really want to practice inclusive education.’ (female, coordinator 2, felicia) ‘when you go, they will tell you to come and see some of your children. they see me as if i have the solution. but i always tell them that they can do something to help. i’m the only person catering for all the 17 schools, so i can’t move from school to school.’ (male, ta3, emma) subjective norms participants mentioned the support various stakeholders provided to them when it comes to implementation of inclusive education. generally, participants (n = 10) said that they do not receive much support to perform their duties as expected. participants related that the ‘weakest link’ in the implementation of inclusion education is the parents of children with disabilities. they revealed that many parents are unconcerned about the education of their children with disabilities. parents make limited attempts to provide their children with the necessary learning materials, food and clothing. while some parents may be willing to provide, many participants (n = 6) said that poverty makes it unlikely that parents will support the education of their children: ‘there was one boy that we needed to take him to rehabilitation centre for him to get vocational training. i never heard from the parents again, and i can’t be doing that work with my own money. i gave up on him, but he is still in the school. he will just pass through the system without writing any exams that will take him to the next level.’ (female, ta1, abena) ‘when i visit a particular school, i have to give the children money for food. some of the parents think children with disabilities can’t grow up and be useful in societies, and because of this they don’t want spend money on them.’ (male, ta4, james) many tas (n = 7) related that they receive limited support from school leaders to facilitate their activities. participants acknowledged that primary and some junior secondary school leaders allow them to work in their schools, but that they are not given any assistance for their work. although money is released by the government to school leaders to purchase teaching and learning materials, three participants said that the government does not make any provision for purchasing of materials for students with disabilities. however, some participants (n = 4) commented that they understand the inability of principals to support them, as their schools do not charge fees: ‘at the beginning of every term, we submit our budget and things needed to support the teaching of students with disabilities to the school authorities. they tell us this is a regular school, and [that] provisions are not made for students with disabilities. i have never understood that logic. we are supposed to be considered, but they think we should also write to the education office for funds.’ (female, ta10, gifty) ‘oh, they are in support of it. where i am now the headmaster is very passionate about the policy, but there is nothing he can do to support us. it’s a public school, which is free, so they don’t charge any fees, and the government has not been giving them money to run the schools. the headmaster here at times use his own money to buy books for the children.’ (female, ta8, rose) regarding the support from government, participants felt that they do not receive any assistance for their work. they (n = 12) said that the government has sent them into the field to assist with implementation of inclusive education without the necessary logistics to perform their duties. despite submitting several reports to the government through the sped, they are yet to receive feedback on their requests. consequently, they have resorted to non-governmental organisations (charity organisations) for finances to procure teaching and learning materials: ‘they have developed a beautiful inclusive policy document. ask them ‘[w]here are the logistics to implement the policy?’ it is not about paper; it is about action. there was a time i was on radio and someone called in and said we come on air and make noise, but when they go to the schools, they don’t want to admit their children. the person is right.’ (female, coordinator 5, dora) ‘they assured us that the government is making plans to reform all schools to implement this policy. but nothing has happened, and we the resource teachers are losing interest in this work. they only pay lip service to this program and its implementation.’ (male, ta7, ray) self-efficacy all the participants mentioned that they have low confidence to practise inclusive education. specifically, they have been unable to perform their duties as expected because of the unavailability of teaching and learning materials. although participants said they have the skills and the desire to support implementation of the programme, they claimed that policymakers are yet to prioritise inclusive education, as they make little budgetary allocation for it. participants also said that they are not provided funds to move from school to school to perform official duties. for instance, tas are supposed to work in many schools; however, they have limited themselves to only a few schools, because they cannot afford transportation costs. some admitted working in one school only, as they do not have funds to move around to work. all the participants mentioned that teachers lack the confidence to support students with disabilities in their classrooms, which they attributed to a lack of pedagogical skills to teach students with disabilities. lack of funds was cited as a barrier to organising professional development for teachers. nine participants revealed that they are supposed to organise professional development for teachers; however that they have not been provided funds to support such an activity. it also emerged that the ges organises professional development in various disciplines, but that they do not make such arrangements for inclusive education. interestingly, four participants related that teachers will not participate in professional development if they will not get any financial gain. as the ges organises professional development without giving funds to teachers, teachers decline its invitations: ‘the office usually organizes in-service training programs for teachers, but when it comes to inclusive education they will tell you there is no money. we have been writing to them to organize at least one every term, but they are yet to respond to our request.’ (male, ta7, ray) ‘when you organize the training, the teachers want incentives [money] before they can take part in the programs. that’s money for their transportation, refreshment, etc. but we don’t have the money to provide the teachers with what they want, since no one give us additional funds to undertake such programs. because of that, whenever we invite teachers to our programs, they were not coming.’ (female, ta1, abena) while some tas (n = 3) accused the coordinators of not working because of an absence of resources, the coordinators mentioned that they cannot support tas that fail to perform their duties. this is as a result of the fact that they have not been given resources to perform their activities. regarding supporting students with disabilities, four participants mentioned that they have chosen subjects to teach so as not to stay idle. generally, all the participants expressed their frustration with their work because of an absence of materials to work, and some intimated that they were thinking of quitting their job: ‘this work has no future. i even want to stop and move to a special school. i think i would be able to use my skills effectively in a special school than being here, where there is not much work to do. my service is needed most in a special school, where there are resources and materials to support our work.’ (female, ta1, x) ‘they started the piloting more than five years ago, and no one from the headquarters have come down to see how they are faring. the resource teachers are leaving the profession one after the other. their presence alone is not enough, as they need logistics to support their work. if you are someone who has passion to work, you would leave the profession.’ (female, coordinator 5, dora) intentions there were positive intentions of participants towards including students with disabilities in secondary schools. many participants (n = 5) mentioned that participation of students with disabilities in secondary school education will enable them to acquire relevant skills for employment and inclusion in a society. some mentioned that the society has made barriers for persons with disabilities, and that, as such, unrestricted access to secondary schools for them will improve the understanding of disability and will promote acceptance of such persons by members of the society. however, when asked about their preparedness to assist students with disabilities in secondary schools, many said that they do not work to that level. although a few tas are able to work in junior secondary schools, none confirmed working in senior secondary schools. while the tas said that they have not been told to work in secondary schools, the special educators revealed that secondary schools do not accept students with disabilities, hence their decision to limit themselves to primary schools: ‘i wish i could extend to secondary schools. the chance is not there for us to work to that level. they have not given us the permission to work there. they only told us to work in primary schools, but i have maneuvered to work as a resource teacher and teach in a junior secondary school at the same time.’ (male, ta6, kofi) ‘for secondary schools, we don’t go there. when officers from accra [the national capital] came down to introduce the program, they didn’t invite teachers in secondary schools. they called teachers in basic schools (year 1 to 9), so we thought secondary schools are not part of the implementation of the policy.’ (male, coordinator 9, abu) three participants who had attempted to extend their services to senior secondary schools revealed that teachers and principals prevent them from working. in fact, three other participants also reported that authorities at the ges are scared to approach principals to discuss the idea of practising inclusive education in their schools: ‘i attempted once, and the teachers didn’t cooperate. they told me i can’t come and supervise them. it wasn’t a pleasant experience, so i informed the coordinator about the situation, and he told me not to go there again.’ (male, ta3, emma) ‘education office [the ges] is afraid to approach head teachers and discuss with them to accept students with disabilities. i quite remember i discussed with the regional director that we need to create a disability unit in one secondary school. she said, “eeh! how could they accept such an idea?”’. (female, coordinator 5, dora) five participants revealed that the ratio of special educators per school is too large, which also makes it impossible for them to work in secondary schools: ‘they have assigned them to cluster of schools, where one person is in charge of about 10 to 15 schools. so what supportive services are they giving to students with disabilities in all schools? as a resource teacher, they have to be in one school and make sure that the children understand everything the teacher is teaching. meanwhile, they are in school a, school b is teaching, school c and all the schools under them are teaching at the same time. where do they go?’ (female, coordinator 5, dora) ‘i’m supposed to work in more than 10 schools, but due to logistical constraints i have been forced to work from one school only. i don’t have the means to move from one school to another, so have decided to stick to a single school.’ (female, ta8, rose) participants (n = 5) who had experienced supporting students with disabilities in junior secondary schools revealed that students with disabilities are unable to participate in lessons. they mentioned that the curriculum is rigid, and that teachers have to ‘race with time’ to complete the syllabus. four participants mentioned that teachers are assessed based on the number of exercises they have completed in a week, which makes it difficult for them to include students with disabilities in their lessons. in their view, the teaching of students with disabilities at the basic school level is ineffective, which makes it impossible for these students to progress to a higher level of education. discussion in this study, ajzen’s (1991) tpb was adopted as the framework to understand the intentions of special educators regarding supporting inclusive practices in secondary schools. the practice of inclusive education seems to be inextricably linked to the availability of special educators in schools to assist the teaching of students with disabilities. in this study, although attitude seems to be increasing, as opportunities are being created for the participation of children with disabilities in education, there is more room for improvement. according to the participants, teachers continue to recognise their role as vital to successful practice of inclusive education. unfortunately, in the absence of special educators, teachers appear to struggle to teach students with disabilities. indeed, the claim of teachers not having skillset to teach students with disabilities is not new as this has been reported consistently in the literature (de boer et al. 2011; forlin & chambers 2011; mantey 2017; mckay 2016). the inability of teachers to support the teaching of students with disabilities could be linked to the quality of training they receive in inclusive education during pre-service education (nketsia & saloviita 2013; nketsia et al. 2016). there is a possibility of teachers being provided theoretical training in inclusive education without much hands-on practical training. consequently, teachers may support the idea in principle, however, would struggle to teach the students with disabilities in classrooms. in effect, the implementation of inclusive education at all levels of education would be a political rhetoric without much effort being put in place to promote the learning of all. this finding probably calls for more discussion in terms of the skills required by teachers to enable them to teach students with disabilities in classrooms. under intentions, scope of practices and job description were found to be barriers to practising inclusive education in secondary schools. specifically, it emerged that the participants are generally limited to working in primary schools. this finding is surprising because inclusive education was introduced in ghana to encourage the participation of students with disabilities at all levels of education (republic of ghana 2015). thus, limiting the services of special educators to primary schools could suggest that policymakers might not expect students with disabilities to access post-primary school education. this finding may be attributed to the negative perceptions regarding persons with disabilities in ghana, as well as the limited knowledge about the capabilities of such persons (anthony 2011; mantey 2017; opoku et al. 2019). traditionally, persons with disabilities have been described as a liability, and at the family level, little attempt has been made to encourage their participation in productive activities in a society (opoku et al. 2019). policymakers might have been influenced by such cultural stereotypes and might not have considered assigning special educators to secondary schools to support the education of students with disabilities in the classroom. this could lead to a situation where students with disabilities will not receive the necessary teaching and learning services in secondary schools. this could limit the prospect of getting many persons with disabilities into higher levels of learning, and ultimately into influential positions. in order for ghana to increase the prospect of successful participation of students with disabilities in secondary schools, (re)deployment of special educators should be seriously considered. the job description of the participants seems to have had an adverse impact on their intentions towards supporting the implementation of inclusive education. effective working relationships between special educators and teachers have been suggested as facilitating inclusive practices (lyons et al. 2016). however, in this study, some participants stated that their attempts to extend their services to secondary schools are resisted by teachers and school leaders. this finding is partially consistent with the results of previous studies, which have reported that poor communication and a lack of definition of the roles of teachers and special educators create tensions, as both parties play overlapping roles, which disrupts the smooth practice of inclusive education (rubie-davies et al. 2010; whalley 2018). the seemingly negative attitudes of secondary school teachers towards practising inclusive education can be attributed to a lack of engagement between stakeholders regarding inclusive education, as well as a lack of clarity on the role of the participants. it should be reiterated here that secondary school education in ghana is highly competitive and merit based, and that progression of students is based on their passing examinations set by an external body (opoku et al. 2021a). apparently, for maintaining a competitive advantage over other schools, as claimed by the participants, teachers in some schools will not accommodate students with disabilities, who, in their view, cannot excel in external examinations. also, as emerged in this study, the secondary school curriculum in ghana is packed, and teachers barely have time to complete all their lessons and prepare students for examinations. in such a system, if there is no communication on the mode of assessment of students with disabilities and if there is no consensus between key stakeholders on inclusive practices, teachers and principals may harbour negative attitudes towards inclusive practices. this finding probably calls for more dialogue between educators on the secondary school curriculum and on which mode of assessment should be used for students with disabilities. the perceived low self-efficacy of the participants is evident from the study results. the presence of special educators in schools enables students with disabilities to receive the necessary teaching services in the classroom (hedegaard-soerensen et al. 2018; lyons et al. 2016). in particular, the presence of special educators could improve teachers’ confidence, as they have experts to complement their efforts. in this study, the participants mentioned that they have been deployed to work in a number of schools, and that they struggle to assist all the students and teachers. specifically, almost all the participants are unable to visit all the classrooms in the cluster of schools where they are expected to work. this finding is partially consistent with previous studies, which have found that limited numbers of special educators are a barrier to enacting inclusive education (opoku et al. 2015). in this study, it appears that the job description of participants is too broad and is difficult to achieve. it is reasonable to point out that the form and scope of involvement of special educators in the implementation of inclusive education in ghana seem to be different from the international best practices mentioned in the literature. in some contexts, special educators are expected to work in schools as advocates of inclusive education, while tas will work closely with classroom teachers. however, according to the ghanaian model described here, special educators working as tas claim that they have been assigned to work in a cluster of schools. it is unsurprising that many schools and teachers do not receive assistance from special educators in the classroom (opoku et al. 2021a, 2021b). because of the broad scope of their responsibilities, the participants may be stretched, and as such, they may have low self-efficacy to support inclusive practices in secondary schools. it is necessary that policymakers reconsider deploying special educators to enhance inclusive practices. one of the major factors that has an impact on the self-efficacy of teachers is the absence of finances and teaching materials. the unavailability of these resources was blamed on the failure of subjective norms (the government). although school leaders were mentioned by some participants as one of the parties that do not make funds available, it is apparent that ultimately the responsibility lies with the government and its agencies to ensure that vital resources are made available to the participants. this finding is consistent with that of previous studies, which have reported that a lack of funds, teaching materials and recognition have contributed to tas being dissatisfied with their job and being unable to improve the learning of students with disabilities (al-natour et al. 2015; butt 2016; devecchi et al. 2012; sharma & salend 2016; timberlake 2018). as is repeatedly mentioned in the literature, posting professionals such as special educators in schools and changing teachers’ attitudes may not be sufficient to ensure the success of inclusive education (ahmmed et al. 2014). there should be requisite teaching materials as well as planned professional development training, so as to ensure that the school community has access to appropriate knowledge in order to enact inclusive education (ainscow & sandill 2010). the participants’ expression of frustration is expected, because they have been deployed to work without the necessary tools. the inability of participants to access resources has contributed to their low self-efficacy and their desire to leave the profession or to perform other duties rather than supporting students with disabilities. it has also contributed to them being unable to function as expected. the government could consider budgeting for inclusive education in order to enable special educators to have access to the needed resources to work. the limited support from the subjected norm was discussed by the study participants. one of the approaches to practising inclusive education is a system approach, where various stakeholders play a contributory role in school practices (ainscow & sandill 2010; lyons et al. 2016). while the government seems to have reneged on its commitment to provide the needed resources, as mentioned by the participants, one would have expected parents to prioritise the learning of their children with disabilities. parents have a role to play to help their children with disabilities succeed in regular classrooms. however, in this study, the participants stated that support from subjective norms such as parents is not available. specifically, the participants claimed that parents are unable to purchase the needed materials and food, to prepare their children for schools or to honour invitations to discuss the welfare of their children. poverty was mentioned in this study as one of the reasons for parents’ inability to support their children. this finding is not surprising because poverty has been found to affect not only persons with disabilities but also other members of the family (dogbe et al. 2019; opoku et al. 2017). with limited assistance from the government to parents (opoku et al. (2021a), it is likely that the latter may have inadequate finances to support the education of their children with disabilities, which might, in turn, affect the practice of inclusive education. there is the possibility that parents might lack understanding of inclusive education, and that, as such, they are unmotivated to support or invest in the education of their children with disabilities (opoku et al. 2019). this probably calls for more engagement between stakeholders, including parents of children with disabilities, on their contribution towards successful practice of inclusive education. study limitations there are several limitations in this study, which need to be addressed by future studies. firstly, it was beyond the scope of this study to verify assertions made by the study participants, such as the assertions that students with disabilities are participating effectively, that support from parents is limited, and that there is a lack of teaching materials. including the voice of officials at the sped, the ges and the ministry of education in the study could have clarified some of the claims made by the participants. it is important to state here that the participants that took part in this study are employed specifically to oversee the implementation of inclusive education in ghana. this means that their accounts may be a true reflection of what pertains on the ground. notwithstanding, it is recommended that future studies explore the perceptions of policymakers, parents and students with disabilities regarding inclusive practices in secondary schools. also, it is unclear whether education policies limit the implementation of inclusive education in primary schools. future research could analyse education policy documents and ascertain the level of commitment towards promoting equitable access to all levels of education. conclusion and recommendations as part of global efforts to eradicate extreme poverty among vulnerable groups, governments have been urged to extend universal access to education from primary schools to secondary schools to enable the participation of all students (united nations 2015). it is believed that graduates from secondary schools will be mature enough and will even acquire skills to participate in economic activities in a society. using ajzen’s (1991) tpb as the theoretical framework, the intentions of special educators to assist teachers and students with disabilities in secondary school classrooms in ghana were explored. in terms of attitudes, there seems to be a gradual understanding of inclusive education. however, there are inherent challenges preventing successful implementation of inclusive education in secondary schools in ghana. unlike the case in previous studies, where tas did not have the requisite qualifications (butt 2016; butt & lowe 2012), in this study the participants are qualified special educators; however, they are unprepared to extend their services to secondary schools because of the following reasons: their job description, which limits them to primary schools, resistance from secondary school teachers and principals, lack of support from stakeholders, and inadequate financial and material resources to effectively execute their functions. these challenges affected the intentions to support inclusion in secondary schools, and contributed to self-efficacy and helplessness because of lack of commitment from subjective norms. without the presence of the study participants, such students may be excluded and denied their right to secondary education. the services of special educators have been identified as vital to the success of inclusive education (devecchi et al. 2012; hedegaard-soerensen et al. 2018). this underscores the need for policymakers to address the concerns raised by the participants who took part in this study. firstly, the government may consider providing the needed resources and facilities to implementers, such as special educators, in order to enable them to promote the learning of students with disabilities. this could be achieved through budgetary allocations to schools to enable them procure the teaching materials needed to support the teaching of students with disabilities. this could enhance the self-efficacy of teachers and encourage them to discharge their duties. secondly, the sped may reconsider deploying special educators to clusters of schools. it appears that the strategy being used may affect the ability of special educators to make an impact in schools. policymakers may consider deploying special educators to every school. for example, if each secondary school has its own special educator, it could be a useful start to making their presence felt in schools and classrooms. thirdly, there is a need for discussion between stakeholders such as teachers, teacher educators, special educators, persons with disabilities and parent on the relevant skills required by teachers to enable them practise inclusive education. the deliberation could extend to using evidence-based research to guide the reformation of inclusive education curriculum for training teachers. moreover, sped could organise sensitisation programmes on the implementation of inclusive education regularly for the community, school leaders, teachers and parents. this would help them to understand the implementation of inclusive education and to collaborate with special educators to facilitate inclusive practices. acknowledgements the author would like to thank all the participants who took part in the study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contributions m.p.o. is the sole author for this article. funding information this research work received no specific grant from any funding agency. data availability data are unavailable because of ethical reasons. disclaimer the views and opinions expressed in this 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with me some of the ways that you provide support to the teachers and students? what is your working relationship with teachers? what do you think about collaboration between teachers and special educator/tas? how are you involved in the preparation of lessons? how do you prepare to support students who are learning different subjects from more than one teacher? how flexible are the lessons to enable the participation of students with disabilities? how do teachers involve students with disabilities in teaching and learning in the classroom? what are some of the resources used in teaching and learning activities? do you face challenges supporting students in specific subjects? what are some of the challenges you encounter in your day-to-day teaching activities? abstract introduction research method and design ethical considerations results discussion limitations of the study conclusion acknowledgements references appendix 1 about the author(s) karen wylie ent department, korle bu teaching hospital, australia faculty of health sciences, university of sydney, australia lindy mcallister faculty of health sciences, university of sydney, australia bronwyn davidson department of audiology & speech pathology, the university of melbourne, australia julie marshall health professions department, manchester metropolitan university, united kingdom citation wylie, k., mcallister, l., davidson, b. & marshall, j., 2016, ‘communication rehabilitation in sub-saharan africa: a workforce profile of speech and language therapists’, african journal of disability 5(1), a227. http://dx.doi.org/10.4102/ajod.v5i1.227 research project no.: 2011-somilre-0018 original research communication rehabilitation in sub-saharan africa: a workforce profile of speech and language therapists karen wylie, lindy mcallister, bronwyn davidson, julie marshall received: 24 sept. 2015; accepted: 31 may 2016; published: 09 sept. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is an urgent global need to strengthen rehabilitation services for people with disabilities. in sub-saharan africa, rehabilitation services for people with communication disabilities continue to be underdeveloped. a first step in strengthening services for people with a communication disabilities is to understand the composition and conditions of the current workforce. objectives: this research describes a sample of the speech and language therapists (slts) working in ssa (excluding south africa). this study explores the characteristics of this workforce, including their demographics, education, experience and geographical stability. method: a mixed-methods survey was used to collect data from slts within anglophone countries of ssa. completed surveys were received from 33 respondents working in 44 jobs across nine countries. analysis included descriptive and non-parametric inferential statistics. this study reports on a subset of descriptive and quantitative data from the wider survey. results: a background profile of slts across the region is presented. results indicated that the workforce of slts comprised a mix of local and international slts, with university-level education. local slts were educated both within and outside of africa, with more recent graduates trained in africa. these data reflected the local emergence of speech and language therapy training in ssa. conclusion: this sample comprised a mix of african and international slts, with indications of growing localisation of the workforce. workforce localisation offers potential advantages of linguistic diversity and stability. challenges including workforce support and developing culturally and contextually relevant slt practices are discussed. introduction despite increasing global focus on rights and equity for people with disabilities (world bank & world health organization 2011), rehabilitation services for people who have communication disabilities in the majority world remain low priority (hartley 1998; olusanya, ruben & parving 2006; wylie et al. 2013). [note: the terms majority and minority world are used in this article to represent outdated terms ‘developing’ and ‘developed’ countries]. communication is critical to human interaction and a basic human right (international communication project 2014). communication can be affected by a diverse range of conditions which impact the ability of an individual to communicate. communication disability has been shown to have a significant effect on participation in family life, social life, education, work and community roles. there is evidence to suggest that having a communication disability alone, without other disabilities, is associated with poorer social, educational and employment outcomes (davidson et al. 2008; johnson, beitchman & brownlie 2010; law, reilly & snow 2013; mccormack et al. 2010). access to rehabilitation services is essential to ensure that people with communication disabilities (pwcd) have the opportunity to: attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. (united nations 2006, article 26) despite this criticality, rehabilitation services for people with disabilities in sub-saharan africa (ssa), including communication disabilities, continue to be underdeveloped and in many places unavailable (world bank & world health organization 2011). the term ‘rehabilitation’ in this article is used to represent services including both rehabilitation and habilitation and which are: a set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments. (world bank & world health organization 2011, p. 96) this type of rehabilitation falls under the health domain of the community-based rehabilitation (cbr) matrix (world health organization 2010) and is often referred to as health-related rehabilitation (nganwa, batesaki & mallya 2013). rehabilitation services operate across a range of paradigms, from specialist rehabilitation and therapy services to community-based and community-driven models of rehabilitation. the medical model of rehabilitation has dominated services in the minority world and been imported to africa as part of a colonial legacy (nixon et al. 2015). simultaneously, across the majority world, many countries, including those of ssa, have adopted the cbr model of rehabilitation (african 2016), which uses community-based workers with minimal formal training to provide generic rehabilitation services at a community level. yet rehabilitation continues to fail to meet the needs of people with disabilities in the region, including pwcd. in a series of surveys, only 26% – 55% of pwd surveyed across four southern african nations reported receiving any type of medical rehabilitation from any provider, with services received primarily being physical rehabilitation (eide & loeb 2006; eide & kamaleri 2009; loeb & eide 2004). rehabilitation is largely a human endeavour. to provide effective rehabilitation services, having the right number and mix of workers is key (gupta, castillo-laborde & landry 2011). in 2006, the world health organization described a clear mandate for the health workforce – ‘… get the right workers with the rights skills in the right place doing the right things!’ (p. xx). while rehabilitation is multifaceted with a scope that must extend beyond that of health systems, the same principle can extend to the rehabilitation workforce. who are the right workers for communication disability rehabilitation? human resource planning is essential to ensure that appropriate rehabilitation services can be provided to those in the community who require them (world bank and world health organization 2011). understanding of the existing workforce, including their ‘social characteristics and work functions’, is needed to improve planning, policy and services (chen et al. 2004, p. 1989). yet there is little information on the composition, skill set, location and activities of the rehabilitation workforce (gupta et al. 2011; who 2009). in the minority world where medical rehabilitation is commonplace, communication rehabilitation is frequently provided by speech and language therapists (slts). slts are professionals with specialist skills in rehabilitation of communication and swallowing disabilities. the modern profession emerged in the late nineteenth century in europe and the united states. the biomedical origins and philosophy of the profession are euro-centric (western) in both origin and belief (nixon et al. 2015; pillay & kathard 2015). in the majority world, with a mix of rehabilitation models in place, it is likely that the limited existing communication disability rehabilitation services available are provided by a range of people, including slts; therapy assistants/mid-tier workers; other professionals, such as teachers; cbr workers; traditional medicine practitioners and family members. research exploring the slt workforce in ssa is timely as the profession may be growing in the region. speech and language therapy training programmes have commenced in a number of ssa countries in recent years (barrett & marshall 2013; topouzkhanian & mijiyawa 2013) frequently supported by institutions from the minority world. an examination of the characteristics of the slt workforce and the roles undertaken by slts will assist in our understanding of the current state of this emerging profession and how it fits in the jigsaw of services for communication disability rehabilitation in ssa. such information has the potential to give rise to more critical discussion of how such rehabilitation services for communication disability should be organised in africa and the relevance of the profession of slt for this majority world region. this study reports on one component of research from a broad workforce survey of slts. it describes the demographic and educational characteristics and experience levels of a sample of the existing workforce of slts in ssa. this paper is a prelude to a companion paper, which reports on the nature, type and organisation of the work slts do in this region. combined, the two data sets will create a preliminary exploration of this workforce providing rehabilitation services to pwcd. literature review historically, terms such as ‘communication disorders’ have been widely used to represent difficulties with effective communication and interaction. this term represents an impairment-focused concept. the term ‘communication disability’ is increasingly used as it recognises the complex interplay between the social and biological aspects of the person’s reality. hartley (1998) provided a description of people with communication disability as those whose ‘…ability to communicate is affected by their response to an impairment and/or social and contextual factors which interrelate with each other and with the person themselves, resulting in impaired communication skills.’(p. 277) communication disabilities can be experienced by people in a multitude of ways. communication disability can exist in isolation – as in the case of people who experience communication disability as a result of a specific communication impairment (e.g. developmental verbal dyspraxia impacting their ability to engage with the world) – or as part of another biomedical condition – such as cerebral palsy or stroke. communication disabilities may be developmental (from birth) and experienced in different ways at different stages across a lifespan. they may be acquired as the result of trauma or disease, impacting people for part of their lives. communication disabilities may vary in severity or impact. others with communication ‘impairments’ may have communication difference rather than a communication disability – such as a person who stutters, or someone who is a proficient augmentative communication user. such individuals would not be considered to have a communication disability if they are competent communicators who participate effectively in social and occupational roles. it is the lived reality of difference that determines whether someone has a communication disability. the way rehabilitation services are offered is inextricably linked to the way disability is viewed. early disability concepts were grounded in the medical model of disability, which saw disability as resulting from an individual’s impairments in body systems (world health organization 2002). in contrast, proponents of the social model of disability argued that disability is socially constructed, created by the barriers of society to the inclusion of all (shakespeare & watson 2002; world health organization 2002). currently, the predominant disability theory is the biopsychosocial model of disability which considers that disability is created through an interplay of biological, psychological, environmental and social factors (world health organization 2002). with widespread adoption of the biopsychosocial model of disability through the mechanism of the international classification of functioning, disability and health (world health organization 2002), communication rehabilitation practices are evolving that recognise the role of both the individual and the environment in communication and interaction (sherratt et al. 2011; threats 2008). another important lens for thinking about communication disability rehabilitation in the majority world is post-colonialism. this perspective is a form of critical disability studies that considers the power imbalances in relationships, influenced by ongoing impacts of the colonial legacy (sherry 2007). the adoption of ‘western’ or euro-centric professions (nixon et al. 2015), including speech and language therapy, without regard to local conceptualisations about communication disability may be considered another form of post-colonialism (hickey et al. 2012). in ssa, where rehabilitation services for communication disability are few, there is a critical need to create services relevant to both culture and context, rather than replicating services, which were designed for other cultural groups (kathard & pillay 2013; pillay & kathard 2015). it is currently unclear if the profession of speech and language therapy in ssa operates in the region in the same way as in the majority world, or if the profession, its conceptualisations about communication disability practice are evolving to meet the specific needs of the region. understanding rehabilitation in ssa is a complex endeavour. two key models of ‘rehabilitation’ are utilised in the region – cbr and the medical model of rehabilitation (haig et al. 2009; nganwa et al. 2013; world health organisation 2010). the medical model is frequently associated with more specialised rehabilitation providers, who typically offer services specifically for a particular concern (i.e. visual rehabilitation, communication rehabilitation). cbr is widely embraced in the region (african 2016). while cbr originated from a need for medical rehabilitation (world health organization 2010) the re-visioning of cbr has seen it evolve into a broad-based vehicle for progression of the rights, inclusion and quality of life for people with disabilities (ilo, unesco & who 2004). cbr is multisectoral and uses local resources to design community-oriented programmes across a range of dimensions, including health-related rehabilitation. there is recognition that there is a place for both more specialised rehabilitation and cbr in the struggle to produce a range of accessible and relevant services and supports for people with disabilities in the region (nganwa et al. 2013) with medical rehabilitation forming a subset of the 2010 cbr guidelines (world health organization 2010). challenges in the provision of rehabilitation services are unsurprising given the difficulties faced by ssa in securing both health and rehabilitation workforces. substantial issues continue to hamper efforts to build the health workforce in ssa, including training availability, migration of health workers, ongoing skill development and maintenance, supervision and inequitably distributed services (anyangwe & mtonga 2007; touré et al. 2013; world health organization 2006). ssa represents 24% of the world’s health burden but has only 3% of global health workers and the lowest density of health workers globally (anyangwe & mtonga 2007; world health organization 2006). there is a paucity of information about the size and composition of the global rehabilitation workforce, both in medical rehabilitation and cbr (gupta et al. 2011; world bank and world health organization 2011), including in ssa (haig et al. 2009; olusanya et al. 2006; tinney et al. 2007). the allied health professions, including physiotherapy, speech and language therapy and occupational therapy, are key service providers in rehabilitation. in a global review of the health rehabilitation workforce, gupta et al. (2011) found one of the lowest densities of allied health professionals globally in ssa, with many countries having less than 0.5 workers per 10 000 population. despite a lack of research in this field, it is acknowledged that speech and language therapy is rare or non-existent in many countries in the majority world (world bank and world health organization 2011), including ssa. in one of the few slt workforce studies in the region, fagan and jacobs (2009) reported on speech and language therapy and ent service availability across 18 ssa countries using key-informant methodology. their data indicated an average of 0.0008 slts per 10 000 population in these countries, when south africa (where slt training has long been established) was excluded from their data. this equates to around one slt per 12 million people. five countries reported having no slts, including democratic republic of congo, malawi, zambia, lesotho and ethiopia. at that time, only one nation in the survey reported offering training in speech and language therapy (south africa). the use of informants’ to obtain information is problematic because of the reliance on the accuracy of the informants information; however, it is consistent with other anecdotal findings (j. bampoe, personal communication, 19 february 2014; e. shah, personal communication, 25 september 2013; wylie et al. 2012) indicating the scarcity of slts in the region and the presence of foreign workers. these estimates do not provide a clear picture of what slts are doing in the region or how communication rehabilitation services are offered, as services may be provided by others, including cbr workers and family members. however, existing figures are illustrative of the lack of specialist skills and knowledge in communication disability in the region. in contrast to fagan and jacobs (2009), this research directly asked slts working and living in ssa, excluding south africa, to provide detailed information about themselves. in line with gupta et al. (2011), understanding more about who these professionals are, their training and their work is key to beginning to probe the current state of speech and language therapy in ssa. such information is important evidence to consider appropriate ways forward for the development of communication disability rehabilitation services and stimulating dialogue on the best ways for the profession of slts to work in an african context. such dialogue is critical as localised programmes for speech and language therapy are now developing in the region. in 2000, speech and language therapy training commenced in togo (topouzkhanian & mijiyawa 2013), followed by uganda in 2008 (h. barrett, personal communication, 7 september 2015), both with collaboration from minority world countries and both institutions have been graduating slts. other training programmes are known to have commenced in several other countries in ssa, a number of these in partnership with minority world countries. examples are given in table 1. table 1: examples of countries with recently commenced speech and language therapy training programmes. data presented in this study are part of a wider survey, which aims to further our understanding of how the profession of speech and language therapy functions in the region by describing a sample of the existing workforce, including demographics, education, language and culture, work roles and continuing education. this study begins to explore the workforce of slt in the region, by describing a sample of slts working in ssa (excluding south africa), including their demographics (age, gender, languages), education, level of experience and intended geographical stability. this research adopts an insider–outsider perspective as slt can be considered a western or ‘euro-centric’ profession (nixon et al. 2015). the research explores differences in training, experience and demographics of the workforce from this perspective. a future companion paper will address the nature, type and organisation of the work slts do in this region. it is acknowledged that this small-scale research project will provide only limited data by describing a sample of the slt workforce. however with a scarcity of both workforce information and critical discussion in the field, it is hoped that this research will further prompt consideration of the key issues and seed further workforce and service delivery research. research method and design a broad workforce survey was used to explore the characteristics and conditions of slts or those undertaking similar work, living and working in ssa, excluding south africa. data were collected from april 2012 to march 2013. this data set is a subset of the larger survey data, described above. the methodological description outlines the process used in the wider survey. setting the study sought to recruit slts living and working in the 20 anglophone or partially anglophone countries of ssa. anglophone countries were selected as this grouping of nations predominantly represents those colonised by the british and are likely to have adopted similar health and educational models. these countries are listed in appendix 1. south africa was excluded as it was considered to have a long established history of speech therapy education (pillay & kathard 2015) and has a disproportionate number of slts when compared to other ssa countries (fagan & jacobs 2009). pragmatic issues of available research funding, timeframe and language issues prohibited the inclusion of other countries in the sample. inclusion criteria for survey recipients included self-identifying as an slt or similar and residence for 6 months or longer in one of the target countries. materials because of a lack of appropriate existing survey instruments, a purpose-designed survey was developed using the process described by punch (2003). aims and research questions were developed by the research team, following literature review, for five key areas: workforce characteristics, education, language and culture, employment and work roles, and continuing education. key variables and conceptual definitions were developed, variables listed and refined, research constraints identified and priority areas determined, and survey items developed and extensively reviewed by the research team who hold significant experience as slts in majority world countries, including ssa. the survey was piloted with six slts who had previously worked in majority world countries and modified following feedback. to improve face and content validity, pilot participants were asked to provide feedback on both survey scope and content, including the wording and sequencing of the individual items, and acceptability of time taken to complete the survey. formal validity and reliability assessments were not within the scope of this small-scale exploratory study. the final survey contained a total of 186 items and took 45–60 minutes to complete. while this resulted in a lengthy survey, which may have negatively influenced response rates, it capitalised on the access to the participants to examine a cross-section of issues. the survey was offered in four modalities – online (surveymonkey), email with attachment (microsoft word), paper copy or by telephone, in an attempt to meet the varying circumstances of the respondents, in contexts where mail and internet services may be unreliable. the survey used open-ended and closed-ended questions that allowed collection of both quantitative and qualitative data. this study reports on a descriptive and quantitative data subset from the overall survey, using data from 24 items. data reported in this study relate to 15 factual, open (text-based) items (e.g. country of residence) and 9 closed (categorical) items. variables reported in this data subset are factual (e.g. age, qualifications) (punch 2003). sampling sampling the workforce of slts in ssa was extremely difficult as there was no sampling frame available via previous workforce studies or workforce statistics in the region. snowball sampling (sadler et al. 2010) was used for this ‘hard-to-reach’ workforce to attempt to utilise local networks existing between slts in the region. snowball sampling is a commonly used sampling methodology for hard-to-reach populations where probability sampling is not possible (handcock & gile 2011). while recognising that this sampling methodology was unlikely to provide a representative workforce sample, the team considered this as appropriate for this exploratory research in order to begin to identify and describe workforce and service issues in the region. this study was a small-scale exploration of workforce issues. it is acknowledged that snowball sampling offers inherent bias, including possibilities of attracting those with stronger networking or identifying those with similar educational, linguistic and cultural backgrounds (handcock & gile 2011). as the profession grows and systems improve, it is hoped that more representative sampling options may become feasible. this study describes the characteristics and issues of this particular workforce sample and information must be interpreted conservatively. procedure initial contact was made with slts, individuals working in the disability sector, organisations in the fields of disability or health, international volunteering organisations, professional associations and academics. initial contact was made with individuals and organisations known to the researchers or who were identified through internet searches. ninety initial contacts were made with individuals and organisations, and they were asked to consider forwarding the information about the survey to known slts in the target countries. contacts were provided with a link to the online survey, an ms word version of the survey for email use, and instructions for requesting a telephone survey. written surveys were distributed to eligible participants during the east african conference on communication disability in kampala, uganda, in 2012. survey return was completion of the online survey, via email, into a completed survey return box or via telephone. because of a lack of regional workforce data and the use of snowballing methodology, it was not possible to calculate response rates. analyses responses to completed surveys were proofed and entered into a purpose-designed excel spreadsheet. open responses were coded according to apriori categories (e.g. identification of african or non-african nationality) for each variable. variables were collated into relevant groups according to research objectives and descriptive analysis undertaken, with statistical analysis performed when relevant. descriptive statistics were used to explore the sample. non-parametric statistics (mann–whitney, chi-square) were used for inter-group comparisons, including differences by nationality grouping and training location. non-parametric statistics were selected because of the likely non-normal distribution of the respondents. statistical analyses were performed using spss software (v22, ibm). ethical considerations ethical approval was granted by the university of queensland, australia (reference number 2011-somilre-0018). all participants received a participant information sheet before commencing the survey. return of the survey indicated informed consent. participants were not asked to provide identifying details. online survey data were protected by secure sockets layer using both server authentication and data encryption. electronic data were password protected and regularly backed up onto a secure server. hardcopy data were stored in a secured area. to avoid potential identification of individual respondents because of the small numbers of slts present in each country, data have been aggregated where necessary. results surveys were obtained from 33 respondents, from 9 of the 20 target countries. the lack of multiple respondents from many countries may represent either very low actual numbers of slts in each country or poor effectiveness of the snowball sampling methodology. informal reports are suggestive of low numbers of slts in a number of target countries (fagan & jacobs 2009; e. shah, personal communication, 25th september, 2013). sampling may have been more effective in countries where the research team held more established contacts (e.g. kenya). response modalities are outlined in table 2. table 2: survey responses by modality (n = 33) the number of responses by country of residence is listed in table 3. because of the small numbers of respondents, data were clustered for analysis and presentation to ensure confidentiality. table 3: survey responses by country of residence (n = 33). demographics: nationality/regionality twenty-one respondents (64%) indicated they were resident in their home country. of the 12 foreign respondents (36%) 1 was from another african country (n = 1, 8%), 10 were from a european country (n = 10, 83%) and 1 was from the asia-pacific region (n = 1, 8%). further analysis clustered respondents by nationality groupings (i.e. african and non-african nationality clusters) in accordance with the regional perspective adopted in this research. demographics: age and gender respondents ranged in age from 25 to 59 years with a mean age of 36.0 years. a mann–whitney test indicated that age was not significantly different between african and non-african nationality groups [african nationality (mdn = 37); non-african nationality (mdn = 30) u = 82.5, p = 0.143].the majority of respondents were women (n = 24, 73%). demographics: languages spoken respondents indicated that they spoke between one and eight languages [mean of 2.9, mode 3, median 3]. a mann–whitney test indicated that african nationality respondents (mdn = 3) spoke significantly more languages than their non-african peers (mdn = 1) [u = 43.500, p = 0.002]. the distribution of multilingualism by nationality group is given in figure 1. unsurprisingly, a mann–whitney test demonstrated that african nationality respondents (mdn = 1) spoke significantly more african languages than non-african respondents (mdn = 0) [u = 36.000, p = 0.001]. two non-african respondents considered themselves fluent in an african language. these respondents indicated that they had a partner or spouse from the country of residence. figure 1: multilingualism, by respondent nationality group. qualifications: speech and language therapy participants self-reported qualifications in speech and language therapy or fields related to clinical practice in communication disability. they also listed qualifications in unrelated fields. it was not within the scope of this project to verify qualifications. all respondents indicated holding formal qualifications in the field, ranging from bachelor’s degree to phd. the majority of overall respondents reported a bachelor’s qualification (67%, n = 22) as their highest qualification in the field. similar patterns of highest qualifications were evident between african and non-african nationals (figure 2). figure 2: highest qualification in speech and language therapy or related area by nationality group. five respondents (15%) indicated they had received subsequent higher level slt-related qualifications following their initial training. four african nationality respondents (qualifications n = 6) had pursued higher training in related fields both inside and outside africa. one non-african national had received higher qualifications in their home country (qualifications: n = 1). qualifications: other fields approximately half of the respondents indicated holding additional qualifications in fields not specifically related to speech and language therapy (52%, n = 17). there was no significant difference between african and non-african nationality groups in self-reported other qualifications [χ²(1) = 1.52, p = 0.218]. the type of ‘other’ qualifications reported ranged from health and education (e.g. occupational therapy, teaching) to unrelated disciplines (e.g. law, management). training: region of entry-level speech and language therapist training more than half of the african nationality respondents had received their first (entry-level) speech and language therapy qualification inside africa (n = 13, 59%). the majority of this subgroup (n = 12) had trained in uganda. of those who trained in uganda, 10 were ugandan nationals, with the remaining 2 from other east african nations. of the 41% (n = 9) of african nationality respondents who had received their entry-level slt qualification outside africa, the majority had trained in the united kingdom, with others reporting training in the united states, russia and canada. all non-african nationality respondents reported training in minority world countries (100%, n = 11) (e.g. the united kingdom, united states and the netherlands). these data are outlined in table 4. table 4: region of entry-level speech and language therapy training. the age of african nationals who trained outside africa (mdn = 37) was not significantly different to those who trained on the continent (mdn = 38) [mann–whitney u = 46.5, p = 0.697]. african nationality respondents who trained outside africa (mdn = 8) had been slts for longer than the non-african nationals trained in the region, as they reported significantly greater number of years since completion of their training than their non-african peers (mdn = 3), [mann–whitney u = 9.000, p = 0.001]. experience: working with people with communication disabilities participants were asked to indicate a range of years of experience they had in working with pwcd. experience levels were clustered at the less experienced end of the range, with over half (n = 18, 54%) of all respondents reporting less than 5 years of experience. when examined by nationality group, experience levels of african nationality respondents were negatively skewed, with 45% (n = 10) of respondents reporting less than 2 years of experience. experience levels of non-african nationals were primarily clustered between 2 and 10 years (n = 8, 73%). self-reported number of years of experience working with pwcd is outlined in figure 3. figure 3: self-reported years of experience working with people with communication disabilities, by nationality group. non-african nationals self-reported significantly more experience working with pwcd than their african peers [mann–whitney u = 58.50, p = 0.015]. african nationality respondents who trained outside of africa also self-reported significantly more experience working with pwcd than their african nationality peers who trained inside africa [mann–whitney u = 26.500, p = 0.042]. stability: intention to stay as an indicator of geographical stability, respondents were asked to estimate how long they were likely to remain in their current country of residence. african nationality respondents reported strong intention to stay, with 91% (n = 21) of respondents indicating an intention to remain in country permanently. in contrast, there was a spread of intended length of residence for non-african nationality respondents (figure 4). over one-third of non-african respondents (36%, n = 4) reported an intended residence of less than 2 years. figure 4: intended duration of residence, by nationality group. stability: reason for residence the small sample of non-african nationality respondents were asked to indicate their main reason for being a resident in africa (figure 5). one third (n = 4, 36%) reported coming on volunteer postings. other reasons for residence included spouses of expatriate workers (n = 3, 27%), espoused to a national of the country (n = 2, 18%), recruited to a particular job (n = 1, 9%) and arriving independently and remaining in the country (n = 1, 9%). figure 5: reason for residence, non-african nationalities, n = 11. respondents who intended to stay for shorter durations (less than 2 years) had a variety of motivations for residence, including volunteering (n = 2), recruited to a job from outside africa (n = 1) and a spouse who is an expatriate worker (n = 1). respondents who had a partner or spouse from the residence country indicated strong intention to stay – from 10 years to permanently. validity this research explores demographic and educational profiles of a sample of slts. these data address a range of key issues of interest, but do not make claim to be representative of the population of slts in the african continent, particularly with the likely rapidly changing workforce. sampling issues outlined impacted on sample size and may have impacted internal validity. the survey was developed by the researchers with significant expertise in the field. positive feedback regarding relevance of the content was received from pilot participants, who had experience of working in the african context. discussion outline of the results this study describes the workforce characteristics of a sample of 33 slts working in 9 countries of anglophone ssa and explores the demographics, training, clinical experience and geographical stability of this sample. while the amount of data is small, it provides useful insight into the slt workforce emerging in the region. participants were distributed across age groups from their 20s to their 40s with fewer respondents aged 50 or over. women comprised 75% of this sample. gender imbalance in the speech and language therapy profession is consistently noted in the minority world countries, with a low proportion of men in the workforce [e.g. 2.5% australia (health workforce australia 2014) and 3.7% the united states (american association of speech and hearing 2013)]. slts indicated speaking a range of languages, although african slts were significantly more multilingual and spoke more african languages than their non-african peers. this is particularly relevant because of the polyglot nature of african communities and the need to provide intervention in mother tongue where possible. an important feature of this sample was the mix of foreign and local workers, with one third of respondents originating from countries outside the region. despite the small study numbers, this sample concurs with anecdotal reports (j. bampoe, personal communication, 19 february 2014; e. shah, personal communication, 25 september 2013), suggesting that foreign nationals makeup a substantial proportion of the small speech and language therapy workforce in the region. all respondents held formal university-level qualifications for practice as a slt. qualifications reported were similar to entry-level qualification for speech and language therapy in the minority world, where entry qualifications vary from bachelor’s to entry-level coursework master’s degrees (rcslt n.d.; speech pathology australia 2005). training location varied, with african nationals reporting training both within ssa and outside, while all non-african nationality respondents trained outside of the region. african nationals who trained outside the continent had been qualified for longer than those who had trained within africa. this pattern is suggestive of a shift – from training outside the region to training inside the region, as training options develop. the small standard deviation in years since training completion for the african trained group lends credibility to the data, as training programmes in ssa have only recently commenced (i.e. in the past decade) and many of the african respondents who qualified in africa had completed their training in uganda, which commenced in 2008 (h. barrett, personal communication 7th september 2015). qualifications of speech and language therapy in this sample mirror education and slt qualifications seen in the minority world. this is unsurprising given the partnerships seen in establishing training programmes for slt in ssa described in the introduction. experience with working with pwcd varied across the sample, with the foreign workforce reporting significantly more years of experience than their local peers, and a wide range of experience levels reported among african nationality slts. african graduates trained outside the continent reported more experience than african nationals trained within the continent. this may represent the shift in the availability of training to more recent african-based training. while there was a relatively even age distribution of respondents, almost three quarters of african nationality respondents indicated that they had less than 5 years’ experience of working with pwcd, indicating a likely late entry into the field. this may be because of the relatively recent commencement of slt training in uganda, where a large proportion of respondents trained. if slt is to play a part in the myriad of services for communication disability, then ensuring workforce stability is key (gupta et al. 2011). data from this sample suggest that an african slt workforce may ultimately offer the continent more stability than the use of non-african slts. non-african nationality respondents indicated a rapid intended turnover, with over half (54%) indicating that they would remain in country for less than 5 years. such rapid geographical mobility compromises workforce stability and may present challenges to service continuity, depending on the type of work that shorter term slts undertake. this rapid turnover of non-african nationality slts is particularly important in light of the differing linguistic, cultural and disability service contexts in which these foreigners operate. slts from outside may require substantial training and support in an endeavour to provide culturally relevant practice (hickey et al. 2012) and time in country may contribute to such cultural relevance. while a great deal is written about volunteering and volunteerism, foreigners in this sample reported a range of reasons for being in africa. while one third of foreign respondents came as volunteers, others were present for a variety of reasons. further research on their motivations and experiences as slts in ssa and the perspectives of the african stakeholders on the contributions and stability offered by foreigners would add value to the literature on volunteering. implications there is now increasing recognition that both health-related rehabilitation and cbr have a place in the spectrum of rehabilitation services. there has been widespread adoption of cbr in the region (african 2016), but there continues to be a key role for health-related rehabilitation, as it underpins other elements of the cbr process (nganwa et al. 2013). the profession of slt is historically and conceptually euro-centric (nixon et al. 2015; pillay & kathard 2015) and is commonplace in contexts where cbr is not widespread. the expansion of slt in ssa prompts further debate about its relevance and future. is the profession of speech and language therapy truly part of the mix of ‘right workers’ for communication disability rehabilitation in the region? if so, how can this profession with its roots in the medical model evolve responsively to african culture and contexts? this research does not answer these questions but consideration of workforce characteristics, stability and education of slt should prompt discussion about the future and relevance of the profession. if slt is to be part of an african response to communication disability rehabilitation, growth of african training is critical. apart from the obvious advantages of language in direct service provision, slts originating from and embedded within a culture will be ultimately best placed to reconceptualise the communication rehabilitation appropriately. barrett and marshall (2013) stress the importance of: sustainable, culturally appropriate, nuanced, and accessible services for pwcd, and this can only be achieved when local professionals are empowered to develop services in their own communities. (p. 50) relevant and competent rehabilitation is providing a service that is respectful of, and responsive to, an individual’s values, beliefs, preferences and language and is well integrated with the local health environment and systems (hickey et al. 2012; laleman et al. 2007). the presence of foreign workers in the mix of slts in the region presents both diverse challenges and opportunities for slt in the provision of relevant and responsive rehabilitation services. use of a foreign (volunteering) workforce in other domains has been shown to add value in ways that include knowledge transfer, service development, capacity building and influx of resources (laleman et al. 2007). conversely, the use of foreign workforces may have disadvantages including their limited cultural awareness and language skills, imposition of ideas and dependence (hickey et al. 2012; laleman et al. 2007). in the case of slt, post-colonialism may include the imposition of rehabilitation practices which may not be best suited to the culture and context. it is critical for all stakeholders to continue to be mindful of the subtle power and cultural dimensions that impact rehabilitation services. while many african nations have european languages as their national language, following a legacy of colonialism, african communities are typically polyglot. cultural and linguistic challenges have been specifically identified as limiting the effectiveness of ‘outsiders’ in the volunteer health service literature (laleman et al. 2007). cultural and linguistic competencies are an important component of effective service provision, particularly in a field that has language and communication at its core. yet foreigners in this study show rapid turnover and limited linguistic diversity. increasing availability of slts who have appropriately diverse language skills and cultural backgrounds should assist in the development of appropriate communication rehabilitation practices in africa, including the development of culturally and linguistically appropriate research and resources (topouzkhanian & mijiyawa 2013). the relatively recent advent of speech and language therapy training in uganda appears to have bolstered the profession of slts in this region, with just over a third of respondents to this survey having completed their training in uganda (n = 12, 36%). ultimately, the practices adopted by slts may depend on factors such as where and how they are trained and the influences apparent in the training. for example, slts trained in the united states may receive more clinical specialist training, whereas slts trained in bespoke training programmes in africa may potentially receive more focus on local service contexts, training others, cbr and public health interventions (barrett & marshall 2013; wickenden et al. 2001; wylie et al. 2014). where and how training is established and whether local culture is central to slt training may shape the evolution of slt practices in ssa. slts with extensive experience in the region are well placed to assist this evolution. further research in this field in curriculum and practice in the region is required. to produce an effective workforce, it is well recognised that after qualification, workers need ongoing systems for support and to have accessible continuing education (chen et al. 2004; world health organization 2006). for practicing slts, access to ongoing support specific to the culture and context is required (rochus, lees & marshall 2014). individuals well placed to offer such support include the african slts with substantial experience in the region. however, the demand for support from these relative few slts may be disproportionate to availability. using foreign slts with regional experience and cultural understanding, typical of the non-african nationality respondents in the survey, may be useful in providing support to the growing profession (rochus et al. 2014). with rapidly emerging mobile technologies, support could be provided either locally or remotely (see nuffield foundation 2015). explicitly identifying professional support needs at this juncture is critical as graduates enter the workforce to ensure their work becomes both high quality and relevant to the culture and context. limitations of the study the results cannot be generalised to the population of slts, as a non-probability sampling method was used and response rates cannot be determined. integrity of the results is dependent on how accurately respondents have interpreted and responded to survey items. selection bias was likely, because of the use of snowball sampling. potential respondents may have been more likely to show interest in participation if they had previous contact with the research team, rather than via unsolicited invitation. despite these limitations, this study offers preliminary data and insights into issues that are emerging as the slt workforce grows and develops in ssa. conclusion this research described a sample of the small slt workforce in the region and identified a mix of both local and foreign workers in the provision of slt services. slts were predominantly women, consistent with patterns in the majority world. african nationals reported higher rates of multilingualism and were likely to be less geographically transient than their foreign peers. qualifications in the sample of slts mirrored qualifications to practice as an slt in the majority world. african nationals had less experience working with pwcd than the foreigners in the sample; however, there was a wide range of experience among african nationals. african nationals who trained outside the region had more experience than their locally trained peers supporting reports of growth in regional speech and language therapy training. this small-scale research project provides a profile of the characteristics, education and experience and stability of a sample of the slt workforce in ssa. the growth of the local slt workforce offers potential advantages in linguistic competence and increased workforce stability. growth in the profession also gives rise to questions about the relevance of slt in the region, how it fits with existing rehabilitation models and how practices derived in a european belief framework can best evolve to meet the needs of the african populations they serve. this small-scale research is an attempt to further understanding of one element of the workforce for communication disability rehabilitation in ssa. improving our understanding of the rehabilitation workforce will allow a more strategic approach to workforce and service development (gupta et al. 2011; touré et al. 2013). acknowledgements competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions k.w. was the principal researcher on the project and wrote the majority of the manuscript. l.m. was 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communication disability, kampala, 12–15 january. appendix 1 countries included in the study: anglophone or partially anglophone countries of sub-saharan africa botswana (republic of botswana) gambia (republic of the gambia) ghana (republic of ghana) kenya (republic of kenya) lesotho (kingdom of lesotho) liberia (republic of liberia) malawi (republic of malawi) namibia (republic of namibia) nigeria (federal republic of nigeria) sierra leone (republic of sierra leone) swaziland (kingdom of swaziland) tanzania (united republic of tanzania) uganda (republic of uganda) zambia (republic of zambia) zimbabwe (republic of zimbabwe) eritrea (state of eritrea) south sudan (republic of south sudan) sudan (republic of sudan) cameroon (republic of cameroon) rwanda (republic of rwanda) abstract introduction methods review findings implications and recommendations conclusion acknowledgements references about the author(s) lizahn cloete department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa zusange shweni department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa leah-jade finnucane department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa martine muller department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa christelle van wyk department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa lirié du plessis department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa citation cloete, l., shweni, z., finnucane, l.-j., muller, m., van wyk, c. & du plessis, l., 2025, ‘accessibility of occupational therapy treatment for at-risk children in lowto middle-income countries: a scoping review’, african journal of disability 14(0), a1643. https://doi.org/10.4102/ajod.v14i0.1643 review article accessibility of occupational therapy treatment for at-risk children in lowto middle-income countries: a scoping review lizahn cloete, zusange shweni, leah-jade finnucane, martine muller, christelle van wyk, lirié du plessis received: 14 dec. 2024; accepted: 25 july 2025; published: 15 oct. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: barriers to occupational therapy (ot) treatment in lowto middle-income countries (lmics) are not well documented, posing challenges for ensuring treatment accessibility. objectives: this study focuses on at-risk children aged 0–17 years in lmics, a vulnerable population facing unique and often overlooked barriers to accessing ot treatment. given that low-income countries account for 85% of the world’s population, it is imperative to ensure that vulnerable children living in these regions receive adequate attention and resources to support their development and well-being. method: this study explored the barriers to the accessibility of ot treatment for at-risk children in lmics. following the jbi manual for evidence synthesis – 2024 edition, a search of cinahl, pubmed, scopus, psycinfo and web of science yielded eight eligible studies. records were screened first by title and abstract, and then by full text. all included studies were published within the last 10 years with a focus on at-risk children and/or adolescents who received ot treatment in lmics. results: a shortage of trained professionals is presented as the most common barrier limiting access to ot. other barriers included limited government funding, lack of resources that impeded the delivery of treatment, social stigma and cultural attitudes, and lack of knowledge and awareness about ot. conclusion: further research is required to explore ways to address these barriers to improve access to ot services. contribution: identified barriers can facilitate actions to increase accessibility to ot interventions for at-risk children in lmics, with the goal of improved health outcomes and greater social inclusion. keywords: barriers to rehabilitation; accessibility to treatment; occupational therapy service delivery; resource-limited settings; children. introduction social barriers, such as poverty, limited access to education, exposure to violence or traumas and neglect, contribute to underperformance in children who are considered at risk (singh 2024). ghongkedze (2018) suggest that ‘at-risk’ children face various environmental and structural barriers that put them at a higher risk of experiencing behavioural, developmental or societal problems such as poor academic performance, financial difficulties, neglect and difficulties becoming a positive member of society and problems with socio-emotional skills and coping skills (goldschmidt & pedro 2019). for at-risk children, ‘treatment’ refers to the strategies employed by occupational therapy (ot) professionals to meet their occupational needs. in lowto middle-income countries (lmics), up to 249 million children under five face poverty, which can negatively impact their physical, social and emotional development (peters et al. 2020). furthermore, at-risk children often have limited access to quality education (maarman & lamont-mbawuli 2017) because of the costs of school transport, uniforms and a lack of sensory stimulating toys and textbooks (nortje 2017). poor-quality infrastructure, a lack of sanitation and safe running water and a lack of classrooms or qualified teachers hinder learning and future employment opportunities, thus perpetuating a cycle of poverty (ghongkedze 2018). globally, almost 85% of children live in lmics, with approximately 40% of children under five experiencing developmental adversities that are caused by impoverished nurturing and learning environments (black et al. 2017). child neglect and poverty are closely linked and often affect families at the same time (yordy 2023). children’s bureau (2019) defines neglect as happening when a parent or guardian fails to provide a child with basic needs, such as food, clothes, housing, medical care or supervision, to the point where the child’s safety, health or general well-being is put at risk. this includes not meeting the child’s educational needs (children’s bureau 2019). however, being unable to provide does not mean that one is unwilling to provide, and for families in lmics, incapacity is frequently the reason (yordy 2023). access to ot treatment for children in under-resourced contexts is complex. for this reason, targeted treatment and support systems are needed to address these complex issues, including ot treatment (van vuuren, okyere & aldersey 2020). occupational therapy for at-risk children occupational therapy for at-risk children encompasses a multifaceted treatment aimed at enhancing various developmental aspects crucial for their well-being and success (tanner et al. 2020). children can benefit from ot assistance in developing their fine motor, gross motor, cognitive and sensory processing skills (guidry 2022). occupational therapists help children develop these skills by providing them with opportunities to practise acquired skills in a fun and supportive environment (d’arrigo et al. 2020). occupational therapists work on enhancing the social skills of at-risk children through developing communication, conflict resolution skills and building positive relationships (domitrovich et al. 2017). coping and social skills can assist the children with managing stress, anxiety, anger and other emotions that are often exasperated in the stressful environments (zohuri & dalili 2023). mondi, giovanelli and reynolds (2021) explain that an effective method to reduce anti-social behaviours is to enable at-risk children to implement socio-emotional competencies. occupational therapists are adept at evaluating the environment to adapt or modify objects or situations. they also mediate between service providers and role-players, and they are advocates for the rights of at-risk children (chen & patten 2021). they assist with transition planning, helping at-risk children develop skills necessary for post-school life, including vocational training, job readiness and independent living skills. in addition, occupational therapists help children develop the skills they require to participate in everyday activities, such as playing, dressing and feeding (clark & kingsley 2020). occupational therapists employ various techniques to address occupational performance barriers among children. these techniques encompass a range of interventions aimed at enhancing children’s adaptation to their environment and advocating for at-risk children and their families by collaborating with relevant stakeholders (beisbier & cahill 2021). the interventions provide training to educators, parents and caregivers on how to support children’s development to ensure that at-risk children receive the necessary resources and support so that they may thrive (anarfi, ofosu-mensah & ababio 2018). the concept of ot, however, does not always align seamlessly with the cultural beliefs and practices prevalent in lmics. van vuuren et al. (2020) argue that ot treatment, often rooted in western ideologies of health and well-being, may lack cultural sensitivity and appropriateness for diverse communities in lmics. van vuuren et al. (2020) added that implementing ot without considering cultural contexts can lead to community resistance and potentially undermine the effectiveness of interventions, highlighting the importance of cultural awareness and sensitivity in ot treatment in lmics. in addition, with limited resources and competing healthcare priorities, some argue that prioritising ot may divert attention and resources away from addressing more urgent health issues, such as infectious diseases, malnutrition or maternal and child health (regalado et al. 2022). a lack of resources resource scarcity presents a significant barrier for ot and has an impact on the availability of specialised equipment and materials crucial for effective patient assessment and treatment (van niekerk et al. 2023). healthcare facilities may lack access to up-to-date assessment tools, assistive devices or adaptive equipment, thereby hindering the quality of assessments and treatment (howard et al. 2022). resource barriers may restrict access to these materials, impacting the range of treatment that can be offered (van vuuren et al. 2020). moreover, even when equipment is available, insufficient government funding and resource constraints can make it difficult to maintain and replace items as they wear out or become outdated, which leads to reduced treatment quality over time (van vuuren et al. 2020). shortage of trained professionals in many lmics, occupational therapists face barriers ranging from deficient working conditions to low salaries. in africa, a shortage of health professionals leads to occupational therapists depending on community-based rehabilitation to deliver services in rural areas (van vuuren et al. 2020). consequently, a significant number of occupational therapists opt to migrate to high-income countries in pursuit of better opportunities (ledgerd & world federation of occupational therapists 2020). this migration can have a devastating impact on healthcare systems in lmics, as it deprives them of the skilled professionals they need. for instance, within the past 5 years, over 20% of occupational therapists who obtained their degrees in ghana have emigrated to high-income countries, searching for safety and better working conditions. this has led to a shortage of occupational therapists in ghana, thus causing difficulty for children with disabilities to access the treatment they need (adu gyamfi et al. 2020). poor infrastructure and a lack of transportation a lack of basic amenities, such as electricity and clean water, can hinder the effectiveness of therapy (varela et al. 2019). this can lead to delayed or missed appointments, disrupting the continuity of care. in lmics, poor infrastructure is further exacerbated by shortages of essential medical supplies and medications, which hurts the quality and effectiveness of service delivery (kruk et al. 2022). in addition, inadequate infrastructure can result in cramped and poorly equipped therapy spaces, making it difficult to conduct effective therapy sessions and assessments (cho 2023). furthermore, rural patients may encounter difficulties accessing ot treatment because of limited transportation options (george et al. 2022), long distances and high transportation costs (chowdhury & ravi 2022). language barriers in lmics, there is often a wide range of languages spoken, which can make it difficult for children and their parents to access healthcare treatments such as ot (al shamsi et al. 2020; rasi 2020). when the treatment is predominantly offered in a single official or foreign language, it risks alienating large segments of the population who do not speak or understand that language (rasi 2020). furthermore, language discrepancies may hinder progress and limit intervention effectiveness (al shamsi et al. 2020). this linguistic mismatch can lead to misunderstandings, miscommunication and a reluctance to seek ot treatment (rasi 2020). inadequate language ability aggravates barriers to accessing healthcare. this results in the underuse of these services and increased dependence on emergency care (rasi 2020). conclusion despite the potential benefits of ot treatment, several barriers persist in lmics. the practical implication of this research lies in its ability to uncover obstacles that hinder at-risk children’s access to ot treatment, including geographical, financial and cultural barriers. by pinpointing the barriers prevalent in these regions, this study paves the way for more comprehensive investigations into the effectiveness of ot treatment in lmics. a scoping review can help consolidate existing literature and promote initiatives such as evidence-based practice guidelines and funding for lmic-specific ot interventions. aim and objectives the aim of this study was to explore the barriers to the accessibility of ot treatment for at-risk children in lmics. specific objectives were: to map the existing literature on the accessibility of ot treatment used for at-risk children in lmics to determine the areas that require additional research to summarise the available data methods the jbi manual for evidence synthesis (2024) guided the presentation of this scoping review. the population, content & context (pcc) framework (table 1) was used to generate eligibility criteria for this review. table 1: population, content and context framework used. eligibility criteria the inclusion and exclusion criteria are presented in table 2. table 2: inclusion and exclusion criteria. search strategy the following databases on the stellenbosch library website were systematically searched: cinahl, pubmed, scopus, psycinfo and web of science. search string examples adolescent and ‘occupational therapy’ and ‘financial barriers’ and ‘lowand middle-income countries’ ‘at-risk children’ and ‘occupational treatment’ and ‘access limitations’ and ‘developing nation’ ‘disadvantaged children’ and ‘occupational therapy activities’ and accessibility and ‘lower middle-income country’ selection of sources of evidence the research team screened the titles and abstracts of all retrieved articles to exclude those that clearly did not meet the inclusion criteria (peters et al. 2020). two reviewers independently and blindly reviewed articles, while a third reviewer peer-reviewed all selected articles. the team discussed conflicts and differing interpretations. the team started with screening when 80% agreement was achieved. reviews of titles, abstracts and full-text articles followed the same process. this approach minimised bias, allowing for more refined decisions regarding inclusion or exclusion (peters et al. 2020). data charting the new edition of the jbi manual for evidence synthesis guided data charting, served as a structured tool for systematically extracting and organising key information from included studies in a scoping review. it provided a clear framework for the researchers to capture essential details related to the study, such as the author, year of publication, country of publication, aim of the study, study design, sample characteristics and findings or results, facilitating the synthesis and analysis of data. data analysis according to the jbi guidelines, a simple frequency count of concepts, populations, characteristics or other fields of data content is adequate for analysing data in scoping reviews. ethical considerations ethical clearance to conduct this study was obtained from the stellenbosch university undergraduate research ethics committee on 16 february 2024 (no. u23/11/301). review findings in total, 258 records were identified (figure 1). these searches were distributed across the various databases as follows: psycnet (43 records), pubmed (89 records), scopus (54 records), web of science (44 records) and cinahl (28 records). figure 1: preferred reporting items for systematic reviews and meta-analyses (prisma) flowchart illustrating the selection process of articles for inclusion. after removing duplicate records, 190 unique records remained. these 190 records were then screened based on their titles and abstracts. during this screening phase, we excluded 130 records for the following reasons: three records published before 2013, and 127 records were deemed out of scope for ot interventions because of no clear reference to ot. subsequently, the full texts of the remaining 60 articles were assessed for eligibility. during this full-text review, 52 articles were excluded for the following reasons: 50 articles were out of scope for ot interventions, one article was older than 2013, and one article was inaccessible. the final review included eight articles (table 3). table 3: characteristics of included studies. description of barriers identified this section describes the five main barriers identified in accessing ot treatment. the most prominent barrier was the shortage of trained professionals (the most reported barrier and was referred to in six of the eight articles reviewed). inconsistent training standards compromised the competence of qualified occupational therapists. uneven distribution of transport, geographic barriers and insufficient governmental funding resulted in inadequate resources for ot services. four studies reported on cultural attitudes and stigmatisation, which hindered community integration, and only one study reported language barriers. these barriers are presented in figure 3. figure 2: geographical locations of studies. figure 3: access barriers to occupational therapy treatment. shortage of trained occupational therapy professionals smith et al. (2018) observe that uganda faces a severe shortage of rehabilitation professionals, with only 30.5% dedicated to work in rehabilitation. similarly, cloete and obaigwa (2019) highlight that kenya has only 0.2 occupational therapists per 10 000 people. bunning et al. (2013) explain how there is a lack of learning programmes for rehabilitation professionals in all developing countries, and when they are present, they vary in curricular content and professional competencies. this inconsistency can lead to unqualified professionals addressing both the needs of service users and those relevant to the contexts of rehabilitation provision (bunning et al. 2013). jose et al. (2023) observed that indian healthcare professionals often lacked the necessary appraisal skills and outcome expectancy to implement evidence-based practices effectively. the study also highlighted inadequate support and guidance from rehabilitation professionals; inadequate written instructions and limited consideration of parental input (jose et al. 2023). jindal et al. (2017) explain that while children in both india and canada receive physiotherapy and speech therapy services, there is less exposure to ot treatments, and there are fewer training institutions. conversely, canada has an equal number of universities offering physiotherapy and ot courses, leading to more balanced service availability (jindal et al. 2017). boubour et al. (2020) describe limited training opportunities in malawi for rehabilitation specialisation because of funding and opportunity-based barriers, as well as a lack of motivation and leadership. in addition, yawar and asif (2022) explain that, in pakistan, the presence of multiple regional languages poses significant barriers to therapy. transportation and geographic barriers for occupational therapy treatment access to ot treatment in africa is significantly impacted by transportation and geographic barriers. in uganda, 56.3% of community-based services are concentrated in the central region, while only 6.0% are in the northern region, showing a notable disparity in the availability of community-based services (smith et al. 2018). this uneven distribution severely limits access to essential post-operative care for children in the northern region (smith et al. 2018). bunning et al. (2013) reported that poor public transportation and the urban-centric location of treatments in rural kenya restrict information dissemination and hinder service uptake by low-income families in rural areas. nota et al.’s (2015) study found that 35% of the caregivers required resources to set up income-generating projects to help with transport costs. in addition, the study describes how zimbabwe’s rough terrain complicates wheelchair use for transporting children to hospitals. approximately two-thirds of the malawian population live in poverty, with rural families experiencing the highest levels of poverty, poor health outcomes and difficulty accessing healthcare (boubour et al. 2020). for the indian population who live in rural settings, long distances to health facilities and unsuitable transportation options exacerbate the barriers to necessary care for children with physical disabilities (jindal et al. 2017). a lack of government funding and resources for occupational therapy services uganda’s rehabilitation services rely on unpredictable funding from non-governmental and donor-based agencies, with international development agencies based in denmark, norway and the usa providing support (smith et al. 2018). a lack of knowledge about the benefits of ot treatment in uganda also affects funding and policy support (smith et al. 2018). bunning et al. (2013) reported that ghana lacked occupational therapists because of insufficient funding and government support. in a smaller study conducted in kenya, caregivers expressed concerns about the limited access to crucial treatment for children on the autism spectrum, citing little government support, significant financial drain, poor advocacy and inadequate collaborative efforts to implement access to interventions as the key barriers. cloete and obaigwa (2019) and boubour et al. (2020) highlighted that because of inadequate funding for malawi’s public rehabilitation programmes, most neurorehabilitation infrastructure existed privately through non-governmental organisations (ngos), making these services costly and unsustainable. previously, three organisations in blantyre provided small-scale community-based rehabilitation services, but all were discontinued because of a lack of funding (boubour et al. 2020). nota et al. (2015) state that zimbabwean caregivers experienced financial difficulties and required resources to set up income-generating projects to help them with transport costs. yawar and asif (2022) noticed that the scarcity of resources, particularly smartphones and limited wi-fi availability, further impedes caregivers’ ability to engage in telehealth sessions and use digital therapy resources effectively. these dual challenges underscore the significant barriers faced by caregivers in accessing therapy remotely (yawar & asif 2022). in a qualitative study, jose et al. (2023) describe a scarcity of necessary resources, such as materials, equipment or tools required to effectively carry out home programmes. relating to the unavailability of resources for ot treatment after discharge, smith et al. (2018) suggest that children may require assistive devices, rehabilitation and other specialised social and educational support to address activity barriers and reduce barriers to participation. language barriers only one study (conducted in pakistan) reported on language barriers. caregivers often speak languages other than urdu, which therapists may not understand. this language barrier hinders effective communication between therapists and caregivers and has an impact on the quality of care provided. without adequate language support, caregivers struggle to understand therapy instructions. in turn, this hampers their ability to effectively support their children’s development (yawar & asif 2022). cultural attitudes and a lack of knowledge regarding occupational therapy treatment bunning et al. (2013) and cloete and obaigwa (2019) reported that community members in rural kenya held beliefs and negative attitudes towards disability that invariably affected services, with cultural superstitions posing barriers to addressing the needs of children with disabilities. yawar and asif’s (2022) qualitative study illustrated the stigma that comes with having a child with special needs and/or developmental disabilities in certain cultural contexts. it was found that stigmatisation can deter pakistani families from seeking therapy or participating in telehealth programmes because of fear of social judgement or discrimination, thus impeding access to essential care for children with developmental disabilities (yawar & asif 2022). jindal et al. (2017) and nota et al. (2015) reported that indian and zimbabwean societies, respectively, presented with negative attitudes towards disability in childhood. although zimbabwean caregivers accessed physiotherapy and/or ot, they struggled to distinguish between ot, speech therapy and physiotherapy, often referring to them collectively as exercises (cloete & obaigwa 2019; nota et al. 2015). implications and recommendations this review explored what has been documented concerning barriers limiting access to ot treatment for at-risk children in lmics. an alarming finding is the general lack of information about the value of ot treatment for children and their caregivers who are at risk of participating in occupations that facilitate development and community integration. inadequate numbers of occupational therapists are well-trained to respond to individual and contextual needs. there is a severe shortage of occupational therapists and rehabilitation professionals in general in african countries (cloete & obaigwa 2019; smith et al. 2018). one contributing factor is the limited availability of ot training in certain countries and the substantial variation in course content and quality, which in turn may lead to inconsistent training standards and lower quality therapy services. (bunning et al. 2013). furthermore, support and supervision for therapists are not readily available (jose et al. 2023), which further impedes access to appropriate services (bunning et al. 2013). this scoping review highlights a complex interplay of barriers that affect access to and the quality of ot treatment in africa and other lmics. geographic barriers (cloete & obaigwa 2019) and inadequate transportation infrastructure significantly hinders access to ot treatment, particularly in rural areas (boubour et al. 2020; nota et al. 2015). furthermore, poverty restricts access to funds for transport from rural to central areas to attend clinics (boubour et al. 2020; nota et al. 2015). rough terrain, especially in rural areas, further complicates accessibility for wheelchair users or users of other mobility aids (nota et al. 2015). the concentration of services in urban centres exacerbates the lack of access to treatment, leaving rural populations underserved. for instance, in uganda, most community-based services are concentrated around the capital kampala, while rural regions remain largely neglected (smith et al. 2018). similar patterns are observed in kenya, burkina faso, congo, tanzania, zimbabwe and malawi, where poor public transportation and difficult terrain further limit access to essential care. the sustainability of ot treatments is compromised by a lack of consistent government funding, which leads to a heavy reliance on non-governmental and donor-based agencies (boubour et al. 2020; cloete & obaigwa 2019; smith et al. 2018). this financial instability affects the availability and quality of treatment across various regions. in uganda, kenya, ghana and malawi, the dependence on external funding makes ot treatment costly and unsustainable. the lack of government provision restricts the remote provision of therapy because of limited resources and services available to access online services (yawar & asif 2022), while a lack of resources at hospitals or clinics restricts the provision of home programmes (jose et al. 2023). in addition, competing healthcare priorities in countries, such as india, result in limited public support for rehabilitation (jindal et al. 2017). although language barriers were reported in one country, the fact that the language in training schools is limited to dominant languages in countries suggests thatthis problem is widespread. occupational therapists who are not proficient in indigenous languages will prevent effective communication between therapists and service users (yawar & asif 2022). this may not only affect patient progress and healing but also the general understanding and advocacy of ot in african countries. in addition, social stigma and cultural attitudes towards disability deter families from seeking ot treatment, creating barriers to service use. stigma and discrimination hinder access to necessary care and support for children with disabilities. there is also a pervasive lack of knowledge and awareness about ot treatment among caregivers and communities, with misconceptions about developmental disorders. limitations only english articles were utilised, which may have excluded other relevant articles published in different languages. furthermore, although disability was not a specific search term, it emerged as a prominent limitation in the findings. occupational therapy is often associated with addressing disabilities, which naturally became a focal point in our research, despite not being the primary intention. the review relied on published articles, which inadvertently may have omitted data from other sources. conclusion the findings from the research highlight significant barriers to accessing ot treatment for at-risk children in lmics. the shortage of trained occupational therapists, followed by a lack of resources and inadequate government funding, was identified as the most common barrier limiting access to ot treatment. the barriers identified collectively hinder the delivery of ot treatment, affecting children in rural and underserved regions. acknowledgements the authors would like to thank the librarian of the faculty of medicine and health sciences library, stellenbosch university for guidance in literature search strategy. competing interests the authors reported that they received funding from the undergraduate and honours research project fund of stellenbosch university, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university following its policy on objectivity in research. authors’ contributions l.c. was responsible for the methodology, conceptualisation, formal analysis, writing (original draft, review, editing), visualisation, project administration, resources, supervision and funding acquisition. z.s. contributed to the writing of the original draft, reviewing, editing and resources. l.-j.f., m.m., c.v.w. and l.d.p. contributed to the formal analysis, investigation, software and data collection. all authors approved the final version to be published. funding information the author reported that they received funding from the undergraduate and honours research project fund of stellenbosch university. data availability the data that support the findings of this study are available upon reasonable request from the corresponding author, l.c. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or the publisher. the authors are responsible for this article’s results, findings and content. references al shamsi, h., almutairi, a.g., al mashrafi, s. & al kalbani, 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https://doi.org/10.17265/2328-2185/2023.04.006 abstract introduction method results ethical consideration discussion conclusion acknowledgements references about the author(s) adrian kusambiza-kiingi physiotherapy department, university of the witwatersrand, south africa douglas maleka department of health sciences education, university of limpopo, south africa veronica ntsiea physiotherapy department, university of the witwatersrand, south africa citation kusambiza-kiingi, a., maleka, d. & ntsiea, v., 2017, ‘stroke survivors’ levels of community reintegration, quality of life, satisfaction with the physiotherapy services and the level of caregiver strain at community health centres within the johannesburg area’, african journal of disability 6(0), a296. https://doi.org/10.4102/ajod.v6i0.296 original research stroke survivors’ levels of community reintegration, quality of life, satisfaction with the physiotherapy services and the level of caregiver strain at community health centres within the johannesburg area adrian kusambiza-kiingi, douglas maleka, veronica ntsiea received: 22 june 2016; accepted: 29 nov. 2016; published: 30 mar. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: stroke survivors are discharged home before they are functionally independent and return home with activity limitations that would not be manageable without a caregiver. aim: to determine stroke survivors’ levels of community reintegration, quality of life (qol), satisfaction with the physiotherapy services and the level of caregiver strain at community health centres within the johannesburg area. method: this was a cross-sectional study using the following outcome measures: maleka stroke community reintegration measure, stroke-specific quality of life scale, caregiver strain index and physical therapy patient satisfaction questionnaire. results: a total of 108 stroke survivors and 45 caregivers participated in this study. the average age of the stroke survivors was 54 years (standard deviation = 12.73) and 58% (n = 62) had moderate to full community reintegration. they were happy with physiotherapy services but not with parking availability and cost of services. the qol was poor with the lowest scores for energy and highest scores for vision and language domains. twenty five (55%) caregivers were strained. a positive correlation was found between community reintegration and satisfaction with services (r = 0.27, p < 0.0001) and qol (r = 0.51, p < 0.0001). a negative correlation was found between community reintegration and caregiver strain (r = -0.37, p < 0.0001). conclusion: most stroke survivors are reintegrated into their communities except in the areas of work and education and have poor qol and most of their caregivers are strained; however, they are satisfied with physiotherapy services. introduction there are limited statistics specifically focused on the prevalence of stroke in south africa; however, thorogood et al. (2007) have indicated that the prevalence is high. in a census carried out by the southern african stroke prevention initiative in 2001 in limpopo, it was found that a crude prevalence of 300 people in every 100 000 suffer a stroke (connor et al. 2004). it is also estimated that by 2023 there will be a 30% increase in the number of first-time stroke sufferers (wolfe 2000). thus, it will be necessary to know the consequences of this condition on patients and their families. stroke may result in motor, sensory, perceptual or cognitive deficits. these deficits, in addition to environmental and personal factors, lead to disability, hindering functional capability. disability in the context of this study is based on the international classification of functioning, disability and health model and refers to the inability to function in multiple life areas such as walking, taking a bath, working, going to school or work, accessing social services – it is seen as a result of an interaction between a person and their environmental and personal factors (who 2001/2002). motor deficits are among the most common deficits that hinder a person’s ability to complete their activities of daily living (adls) (langhorne, coupar & pollock 2009) and can also affect the upper limb leading to poor functional use of the arm (lo et al. 2010). this leads to problems while engaging in adls and community activities (pang, harris & eng 2006). these limitations are not only for severe stroke because even after a mild stroke, adls and social roles may be affected (rochette et al. 2007) and this may lead to participation restrictions. in all, 39% to 65% of stroke survivors report problems with activity limitations and participation restrictions that are related to their community reintegration (pang, eng & miller 2007). a canadian study by mayo et al. (2002) also showed that 50% of stroke survivors return to their communities to live with impairments that would not be manageable without the assistance of an able-bodied caregiver at home. this means that the patients will have limited activities because of dependence and this may result in inactivity-related deconditioning leading to decreased physical capacity (langhammer, lindmark & stanghelle 2007). this is aggravated by the fact that most stroke survivors are discharged from the hospital when they still remain dependent for adls (mamabolo et al. 2009). this lack of independence would also lead to lower levels of community reintegration and poor quality of life (qol). despite the fact that stroke survivors still have impairments at discharge, in a study done in washington it was shown that most of them still get discharged home with no post-discharge rehabilitation services (edwards et al. 2006). this also contributes towards poor functional recovery and ability to engage in meaningful activities and participate in their community (hillier & inglis-jassiem 2010). thus, post-discharge rehabilitation has to be taken into consideration, more so that it is also essential to being able to participate in education, the labour market and civic life (who 2011), which are indicators of community reintegration. lord and rochester (2005), in their systematic review, established that community reintegration marks the end of their rehabilitation for many stroke survivors. to ensure that stroke survivors achieve community reintegration, they have to be discharged with a plan for continued rehabilitation for them to reach their maximum capacity. rehabilitation in most stroke rehabilitation settings in south africa, including johannesburg, can take place in various settings such as hospital outpatient department, community health centre or clinic rehabilitation department and in the patient’s home (rhoda, mpofu & deweerdt 2009). community healthcare centres (chcs) provide services including preventative, promotive, curative and rehabilitative care and these centres, in most cases, are the first medical point of contact for stroke survivors (rhoda & hendry 2003). some patients receive private rehabilitation services. most patients receive treatment in the government sector; however, the services are limited because of lack of resources. this is because the south african health system is inequitable, with the privileged few having disproportionate access to health services (national health insurance gazette 2011). some stroke survivors do receive rehabilitation services at the chcs but a clear view on their satisfaction with services provided has not emerged. the significance of patient satisfaction is that patients are more likely to adhere to exercise programmes or recommended activities when they are satisfied with the physiotherapy service (hush, cameron & mackey 2011). patient satisfaction can also be used more to measure the quality of healthcare services (hush et al. 2011). literature on the levels of community reintegration of stroke survivors living in the johannesburg areas and their satisfaction with physiotherapy services received has not been established. this led to the researchers to conduct this study with the following objectives to: (1) determine the level of community reintegration of stroke survivors in the johannesburg areas, (2) establish the stroke survivors’ satisfaction with physiotherapy services received at the community health centres within the johannesburg area, (3) establish the qol of these stroke survivors, (4) establish the level of strain experienced by their caregivers, (5) establish and determine the relationship between community reintegration and caregiver strain, qol and satisfaction with physiotherapy services. method this study was a quantitative, cross-sectional study. stroke survivors were recruited from four community health centres. these four centres are community health centres that offered physiotherapy as part of their rehabilitation service in areas around johannesburg at the time of the study. the sample size was based on the combined average monthly population of stroke survivors seen at these four health centres over 3 months which was 150. according to bartlett, kotrlik and higgins (2001), the number of participants needed to accurately represent the views of the population under study, based on the monthly patient population, was 108. this figure was calculated at a confidence interval of 95% with reliability of 0.05 (bartlett et al. 2001). stroke survivors were included if they met the following criteria: were aged more than 18 years, were with or without a caregiver, receiving physiotherapy services as an outpatient or on a home visit basis from any of the study sites, able to give verbal or written consent to take part in this study, had a stroke for more than 6 months but not more than 4 years (most improvements after stroke happen within the first 6 months and stroke survivors return to work up to 2 years after stroke) (duff, ntsiea & mudzi 2014). stroke survivors were included in this study up to 4 years post-stroke to accommodate those who had severe stroke who may have taken longer to reach a plateau of their functional level considering that some of the patients seen at the chcs had stroke duration of more than 4 years but less than 5 years. they were excluded if they had more than one stroke, if they had receptive aphasia and if they had any other comorbidity which may affect their mobility or cognitive ability. the primary caregiver was defined as the person who spends the most time compared to any other individual in the household caring for the patient. outcome measures the maleka stroke community reintegration measure (mscrim) was used to assess community reintegration. it has an urban and rural version, but for the purpose of this study, the urban version was used. this measure was found to be reliable and valid for stroke survivors in the urban townships of johannesburg. the urban version has 40 items that are spread over the following six domains: adls and self-care, social interaction and relationship, home and family responsibilities, social interaction, extended family responsibilities and work and education. the urban version of the mscrim is scored out of 112 by the researcher and converted to a percentage with a higher percentage score implying a higher level of community reintegration (maleka 2010). the mscrim was chosen because of its high reliability coefficient of 0.95 as well as its urban version’s relation to the reality of an urban community in south africa (maleka 2010). it also has elements in it that relate directly to the social circumstances that were faced in the communities in the areas surrounding johannesburg not found in other questionnaires such as attending traditional events and being able to collect water from a source outside of the participants dwelling. the caregiver strain index (csi) was used to measure the subjective caregiver strain. it consists of 13 yes/no items which cover employment, finance, physical, social and time-related matters (sullivan 2002). a total score above seven indicate that that the caregiver is strained (robinson 1983). the csi was chosen as most articles in the literature used it as the primary measure when investigating caregiver strain (blake, lincoln & clarke 2003; bugge, alexander & hagen 1999; mudzi 2010) and thus it would be easy to compare findings considering that mudzi’s (2010) study was conducted in johannesburg south africa. the csi was found to have an internal consistency of α = 0.86 and construct validity was supported by correlations with physical and emotional health of the caregiver as well as subjective views of the caregiving situation (sullivan 2002). qol was measured using the stroke-specific quality of life scale (ssqol), which has the following 12 domains: energy, family, roles, language, mobility, mood, personality, self-care, social roles, thinking, upper extremity function, vision and work/productivity. higher scores indicate better function. it was chosen for its convenience of having one score, which would allow for simplified correlations between the ssqol and mscrim. the ssqol was found to be a valid and reliable measure of health-related qol, has good internal consistency (α = 0.81–0.94), construct validity and responsiveness to change for the 12 subscales (lin et al. 2011). patient satisfaction with physiotherapy services was measured using the physical therapy patient satisfaction questionnaire (ptpsq), which comprises 26 points as follows: first 6 asking about demographic data as well as site of injury and the other 20 questions relating to satisfaction with the physiotherapy service offered. high total scores are indicative of higher levels of patient satisfaction with the physiotherapy service they received. the ptpsq has a cronbach α coefficient of 0.99. the questionnaire was shown to yield reliable measurements as well as have content, construct and concurrent validity (goldstein, elliot & guccione 2000). the ptpsq was chosen for this study. although the questionnaire was developed in america and had items that were related to bills and parking space, things not generally found at the healthcare facilities in the johannesburg area, it was very comprehensive as well as providing a space for comments that would help enrich the discussion of this study by allowing the researcher to capture data that might not have been directly related to the question. demographic data sheet, which was developed just for this study, was also used to capture information such as gender, physical address, race, stroke survivor’s currents occupation, date of administration of the questionnaire, date of birth, age, marital status, whether a caregiver is present, level of education, side of the body affected by stroke and date of stroke. procedure files at each clinic were checked regularly for stroke participants who met the criteria for inclusion in this study by the physiotherapists working at each clinic. patients who did not meet the inclusion criteria of this study also received rehabilitation services. participants who met inclusion criteria were contacted telephonically or through the weekly stroke groups to set appointments at the clinic. home visits were done where the participants could not make it to the clinic. consent was obtained from participants who met the inclusion criteria and demographic data sheet was completed by all study participants followed by the mscrim and ssqol. caregivers were assessed using the csi. the ptpsq was administered for each participant to determine the satisfaction with the physiotherapy services. all these were taken at once. data collection was done as the patients who met the inclusion criteria became available until the minimum sample size was attained. total data collection period was 12 months. data analysis descriptive statistics were used and presented as frequencies, percentages, means and standard deviations (sds). the data for the ptpsq were skewed and thus median scores and interquartile ranges were calculated. the data from the mscrim were skewed and therefore spearman’s coefficient was used to establish correlations between community reintegration and caregiver strain, qol and satisfaction with physiotherapy services. results one hundred and eight participants met the inclusion criteria and they were all recruited and they all agreed to participate in this study. forty-two percent (n = 45) of the 108 stroke survivors had caregivers. demographic information the mean age of stroke survivors was 54 years (sd = 12.73). the youngest participant was 20 years old and the oldest was 79 years old. fifty-seven participants came from alexandra township, 2 from diepsloot, 8 from mofolo, 19 from hillbrow and 22 from chiawelo (n = 108). the time since stroke was 26 months. demographic information of the study participants is shown in table 1. there were more females (56%) and most of the participants (65.7%) left high school without completing matric (final year of high school). the percentage of stroke survivors with left hemiplegia was almost equal to that of patients with right hemiplegia (53% and 47%, respectively). table 1: demographic information of the stroke survivors (n = 108). objective 1: stroke survivors’ level of community reintegration results of the level of stroke survivors’ level of community reintegration are presented in table 2. the mean total score for the mscrim was 70 out of 112 (sd = 22.94). the highest score measured was 112 and the lowest score was 17. fifty eight percent of the stroke survivors had moderate to full integration and 21% had no community integration. the mscrim domain scores are presented in table 3. when viewed as a percentage of each total domain score, ‘adl & self-care’ (36 out of 48) and then ‘social interactions’ (9 out of 13) have the highest scores among the participants in this study. areas that participants struggled with the most were extended family responsibilities and work and education, which both had a mean score of two out of six. table 2: level of stroke survivors’ community reintegration (maleka stroke community reintegration measure scores). table 3: maleka stroke community reintegration measure domain scores (n = 108). objective 2: satisfaction with physiotherapy services the mean score for patient satisfaction with physiotherapy was 92% (sd = 9.17). the ptpsq scores are presented in table 4. participants’ lowest scores were for accuracy of bills, availability of parking and cost of physiotherapy. all the other questions had full total scores. table 4: physiotherapy-specific patient satisfaction questionnaire individual question scores. objective 3: quality of life the mean total for the ssqol for all 108 stroke survivors in this study was 157 out of 245 (sd = 23.16) with a highest score of 235 and the lowest score of 54 out of 245. mean scores for the ssqol domains are presented in table 5. participants had problems in each of the domains with the lowest scores for the energy domain and highest scores for the vision and language domains. table 5: stroke-specific quality of life scale domain scores (n = 108). objective 4: level of strain experienced by caregivers twenty five (55%) caregivers had a csi of score ≥7 meaning that they were strained and 20 (45%) had a score <7 meaning that they were not strained. the numbers of caregivers who replied ‘yes’ and ‘no’ to any of the domains are shown in table 6. caregivers had difficulty with the following: physical strain from taking care of the stroke survivor, having many changes to their personal plans and seeing the stroke survivors’ behavioural changes. sleep disturbances and work adjustments were the least affected items. table 6: caregiver strain index domain scores (n = 45). objective 5: correlation between community reintegration and caregiver strain index, stroke survivors’ quality of life and satisfaction with services the results of correlations between mscrim and csi, ssqol and ptpsq are presented in table 7. there was a positive correlation between mscrim and ssqol showing better qol in participants with higher levels of reintegration. there was a tendency to get better scores between mscrim and ptpsq showing a higher level of satisfaction with physiotherapy services in participants with higher levels of community reintegration. a weak negative correlation was found between the mscrim and csi indicating that caregivers of participants with higher levels of integration had lower levels of strain. table 7: correlation between community reintegration and caregiver strain index, stroke survivors’ quality of life and patients’ satisfaction. ethical consideration ethical clearance was granted by the university of the witwatersrand committee for research on human subjects: clearance number m1404452. participants were given an information letter that explained the procedure and both participants and caregivers were asked to complete a consent form prior to administering the questionnaires. the participants were given the option of withdrawing from the study at any time and participants remained anonymous when the findings were presented. discussion the objectives this study were to determine the level of community reintegration of stroke survivors in the johannesburg areas, establish the stroke survivors’ satisfaction with physiotherapy services received at the community health centres within the johannesburg area, establish the qol of these stroke survivors and the level of strain experienced by their caregivers. the relationship between community reintegration and caregiver strain, qol and satisfaction with physiotherapy services was also determined. community reintegration after stroke fifty seven percent of the stroke survivors had moderate to full integration and 21% had no community integration. an explanation for those with low integration may be because of the low levels of functional ability at the time of discharge from the hospital. according to mamabolo et al. (2009), the average stay of a survivor of stroke in chris hani baragwanath, a government hospital in south africa, is 12 days. these patients are discharged from hospital quite early and one could say that they are discharged before they reach functional independence (mamabolo et al. 2009). to ensure early discharge leads to community reintegration, survivors of stroke need to be discharged with a plan for continued intervention in their home setting or as a rehabilitation outpatient (mayo et al. 2000). in south africa there is a shortage of post-discharge rehabilitation services for patients who use government facilities. the shortage of rehabilitation services was also found to be a challenge in a study by rhoda et al. (2009) that looked at rehabilitation of stroke survivors at community health centres in the western cape. they established that of the 39 community health centres situated in various districts within the western cape, only 20 offered rehabilitation services. all the centres that offered rehabilitation services in this study had physiotherapy services, and only half offered occupational therapy services. reduced community reintegration post-stroke is not unique to this study. in a hong kong study by pang et al. (2007), only 11% of the participants considered themselves to be reintegrated into their communities, which is much less than 28% who considered themselves fully integrated in this study. both studies were done more than 6 months post-stroke, but in the study by pang et al. (2007), only those above the age of 50 years were included. this may have included participants whose functional ability has deteriorated many years after their stroke because patients who are unable to maintain their activity levels post-stroke experience deterioration in their condition (langhammer et al. 2007). patients in the study by pang et al. (2007) also experienced low levels of self-efficacy in their study, whereas self-efficacy or ability to manage adls was the one domain in this study that had the lowest complaints and this is a possible explanation for the relatively higher number of those who were reintegrated (kluding & gajewski 2009). participants experienced some difficulty in all mscrim domains with adls and self-care and social interaction showing the least amount of difficulty. in a study by mayo et al. (2002), 77% of the participants did not struggle with basic adls. this finding matches the findings in this study. participants in the study by mayo et al. (2002) were assessed at 6 months post-stroke, which is the same as the timeframe in this study. a reason for this domain having the best scores may be because inpatient rehabilitation is centred on functional exercises (duncan et al. 2003). edwards et al. (2006) also found that participants scored well with the adls but struggled in the other domains. this focus on self-efficacy or ability to complete adls in therapy results in a higher adl score (pang et al. 2007) but it should be noted that focus on this domain in therapy results in incomplete recovery in the other domains. work and education was one of the domains that stroke survivors in this study struggled with the most with a mean score of 2 (sd = 2.3). participants in a study by mayo et al. (2002) also struggled most with meaningful activities to fill the day and this included work and education. vocational rehabilitation post-stroke is not given much attention as stroke usually occurs later in life and this may be a reason why participants in both studies struggled with this domain (vestling, tufvesson & iwarsson 2003). participants in a study by edwards et al. (2006) showed decreased satisfaction in their ability to engage in productive pursuits such as work and volunteer activities as well as their ability to travel and participate in leisure and recreational pursuits. this finding is also similar to the one in this study. a reason for low scores with the work and education domain in this study may be that most participants already had low levels of education or were unemployed before they had their stroke and had no intention of going back to school and no work to go back to and no volunteering in community-related projects (unpaid employment). patient satisfaction with physiotherapy services the mean score for patient satisfaction with physiotherapy services was 92% (sd = 9.17), which indicates that most patients were satisfied with the services. this is more than the 71% of those satisfied with physiotherapy services in a study by beattie et al. (2002). when patient’s expectations of care are exceeded, levels of satisfaction are high. patients may view the physiotherapy services offered at chcs as inferior as there is heavy reliance on hospitals for this acute management while access to community-based rehabilitation facilities is limited (anderson et al. 2000). these participants may not have expected to encounter physiotherapy services at a community level because of scarcity of this service and this may have led to greater satisfaction because of exceeded anticipated expectations of what the healthcare facility could offer. south africa has adopted the primary healthcare approach as the most appropriate strategy to meet its healthcare needs and a district health system is in place to meet the healthcare needs of each province with at least one chc in each of the districts (rhoda & hendry 2003). these chcs provide services that range from preventative and promotive to curative and rehabilitative services, and most of the stroke survivors are seen either once a week or once a month depending on the chc patient load. the results of a study by rhoda et al. (2009) revealed that there is a lack of therapy services to provide rehabilitation to survivors of stroke at the chcs in the western cape. the findings in this study also suggest that the amount of time spent on physiotherapy, occupational therapy and speech therapy was low either as a result of the lack of services or an inability to access the chcs (rhoda et al. 2009) participants’ lowest scores were for accuracy of bills, availability of parking and treatment prices. for the parking item, participants may have viewed this item as the place where their public transport drops them off or where their private taxi parks in relation to the facility because many of the patients who come to these primary healthcare facilities use public transport. participants may have viewed the treatment prices item as the travel costs they may have incurred because they did not have to pay for services received. this is different to score in a study of patient satisfaction with physiotherapy services by beattie et al. (2002). cost of therapy was the one item in their study that had poor scores and this may have been related to the payment patients needed to make for their services. patients were happy with the waiting time at the physiotherapy department. the item ‘i was seen promptly when i arrived for treatment’ scored 5 (4 to 5) on the ptpsq. this could be because of the fact that at the community health centre, a patient is generally given an appointment beforehand and just goes straight to the physiotherapy department upon arrival without having to queue up for the clinic file. this can be viewed as decreased waiting time in comparison to the rest of the clinic. quality of life after stroke the mean total for the ssqol for all 108 stroke survivors in this study was 157 out of 245 (sd = 23.16) with the highest score of 235 out of 245 and the lowest score of 54 out of 245. in a study by ntsiea, van aswegen and lord (2015), the mean total for the ssqol was 219 with a minimum of 151 and a maximum of 245. every domain scored higher in the study by ntsiea et al. (2015) compared to this study. it must be noted that in the study by ntsiea et al., the ssqol was assessed up to 6 months after stroke while in this study the ssqol was assessed up to 4 years after stroke. according to ahlsiö et al. (1984), adls function improved during follow-up assessments, but the qol did not improve. this explains the findings of this study as qol seems to have decreased over time. participants reported problems with all domains including self-care, social roles and work/productivity. these figures are all lower than the levels found for these domains by ntsiea et al. (2015), but similar to a study by hopman and verner (2003) in which patients reported decline in domains related to their independence, usefulness, self-care and socialising that were as a result of comorbid conditions, reduced energy levels, limited social life and unrealistic expectations of recovery after stroke. mean scores for social roles (14 out of 20) and work and productivity (9 out of 15) were also poor. these scores were lower than those found in the study by ntsiea et al. (2015), which is an indication that most participants in this study did not have meaningful activity, which includes returning to work or school post-stroke. returning to work after stroke has a positive impact on qol (ntsiea et al. 2015) and looking at the high levels of unemployment in this study, this statement holds true as the qol of the stroke survivors in this study was poor especially in the work and productivity domain. caregiver strain most of the caregivers (55%) in this study were strained. the percentage in this study is much lower than the caregiver strain measured in the studies by mudzi (2010) and hilton et al. (2013), which were 90% and 77.1%, respectively. their studies focused more on participants who required a caregiver for core adls, whereas participants included in this study did not need to have a caregiver and thus the patients’ level of functional dependence may be less in this study leading to relatively less number of strained caregivers. the percentage of strained caregivers is relatively lower in the study by blake et al. (2003) in which 40% of the caregivers were found to be strained after 6 months. this study was conducted in middle to high socioeconomic settings, which could mean that the caregivers’ socioeconomic conditions may be relatively better resulting in less strain. this study and those by mudzi (2010) and hilton et al. (2013) were done in low socioeconomic settings. people living in these settings may already have had some form of financial or physical strain prior to the stroke. thus, stroke in addition to the pre-existing strain may have predisposed the caregivers to additional strain. relationship between community reintegration and caregiver strain index, stroke survivors’ quality of life and patients’ satisfaction with physiotherapy services there was a positive correlation between mscrim and ssqol, which shows that as community reintegration improves, so does the survivor of strokes’ qol. qol is affected by levels of physical impairment, which affects functional outcomes and community reintegration (carod-artal et al. 2000) and another factor that negatively affects community reintegration is the inability to complete adls (pang et al. 2007). participants in this study had few problems with their adls and most of them had reintegrated well into their communities. thus, it makes sense that there is a positive association between mscrim and ssqol in this study. there was a weak positive relationship between mscrim and ptpsq showing a higher level of satisfaction with physiotherapy services in participants with higher levels of community reintegration. pound et al. (1994) stated that better levels of integration did not necessarily lead to high levels of satisfaction, but led to better adherence to exercise programmes (hush et al. 2011). this may have meant the participant identified with or trusted the healthcare facility more and this would have led to higher levels of exercise adherence, which would improve their functional ability and eventually lead to better community reintegration. there was a negative correlation between community reintegration and levels of caregiver strain. hillier and inglis-jassiem (2010) suggests that patients who return home with lower levels of reintegration are more of a physical and financial burden on their family and this holds true in this study as this study showed physical strain and financial strain as factors that contributed to caregiver’s levels of strain. personal and behavioural changes in the participants were reported as reasons for caregiver strain and this is similar to the findings by mudzi (2010). thus, it makes sense that community reintegration is negatively correlated to caregiver strain in this study. limitations of the study lack of clarity regarding costs of therapy as well as understanding of what was meant by the question related to parking in the ptpsq may have made the results of the ptpsq less accurate. conclusion this study’s findings are similar to what is in the literature in that not all stroke survivors are reintegrated into their community and that most of them have poor qol. this decreased level of reintegration leads to increased levels of caregiver strain. although the stroke survivors may not have fully reintegrated into the community, they did experience high levels of satisfaction with the physiotherapy service. acknowledgements competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions a.k.-k.was the project leader. 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world health organization (who), 2001/2002, international classification of functioning, disability and health, who, geneva. world health organization (who), 2011, world report on disability, who, geneva. abstract introduction statement of the problem research methods and design discussion of findings conclusion study recommendations acknowledgements references about the author(s) jabulani mpofu department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa department of disability studies, faculty of applied social sciences, zimbabwe open university, harare, zimbabwe maximus m. sefotho department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa division of disability studies, department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation mpofu, j. & sefotho, m.m., 2024, ‘challenges of competency-based curriculum in teaching learners with learning disabilities’, african journal of disability 13(0), a1268. https://doi.org/10.4102/ajod.v13i0.1268 original research challenges of competency-based curriculum in teaching learners with learning disabilities jabulani mpofu, maximus m. sefotho received: 14 june 2023; accepted: 19 dec. 2023; published: 04 mar. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: zimbabwean government adopted competency-based curriculum in 2017 as a measure to prepare learners for life and work in an indigenised economy and increasingly globalised and competitive environment. the government also sought to ensure that learners develop skills necessary for lifelong learning in line with the emerging opportunities. objectives: the purpose of this study was to explore challenges faced by teachers in the implementation of competency-based curriculum to learners with learning disabilities in mhangura of makonde district in zimbabwe. methods: a constructivist lived experience perspective underpinned this research, in which a single case study was used to interact with participants on challenges faced by teachers in the implementation of competency-based curriculum to learners with learning disabilities. purposive sampling was used to select nine participants (five males and four females). data were collected through face-to-face interviews and transcribed verbatim. four themes emerged from the thematic analysis of data sources. results: results indicated that participants were facing several challenges in implementing competency-based curriculum to learners with learning disabilities. among the cited challenges were negative attitudes towards learners with learning disabilities, poor teacher preparation, lack of resources and poor collaboration. conclusion: the study concluded that the objectives of competency-based curriculum are noble to learners, but its implementation is not inclusive. contribution: the study findings will assist in identifying areas that need to be improved and need strengthening. the education policy makers in the country will have a better understanding of challenges faced by teachers in the implementation of competency-based curriculum in zimbabwe. keywords: attitudes; challenges; competency-based curriculum; learners with learning disabilities; teachers. introduction competency-based curriculum is a type of learning that focuses on acquisition of skills, abilities, personal traits, capacities, knowledge and values (boahin 2018). it is different from traditional curriculum where learning is based on academic framework where achievement is judged by the ability to recall key points, information imparted or sequences memorised. competency-based curriculum focuses on what a student knows and can do rather than on how the student learns. it measures learning rather than time. competency-based curriculum progresses by allowing learners to demonstrate their competencies (mkonongwa 2019). this means learners have to prove that they mastered the knowledge and skills required for a particular course regardless of how long it takes and they should be able to apply the skills in various life situations. it helps learners prepare for life and work by ensuring that they are equipped with the requisite knowledge, skill and attitude (mulenga 2018). in a competency-based curriculum, there is inclusion of active learning; this helps to produce learners who are holistic, creative, innovative, analytical and cooperative in their communities and nation. bratianu, hadad and bejinaru (2020) posit that competence-based curriculum requires a paradigm shift from assessing learning content to assessing learning outcomes. competency-based curriculum looks at life after school and the outcomes of educational systems, prepares and orients learners for participation in voluntary services leadership (manokore 2022). competency-based curriculum fosters lifelong learning in line with the emerging opportunities and challenges of the society. it focuses on what learners are expected to do rather than on what they are expected to know. it is a learner-centred curriculum that is adaptive to the changing needs of students, teachers and society instead of focusing on grades and yearly curriculum schedules (boahin 2018). the main focus is placed on how competent each student is in the subject by demonstrating mastery. competency-based curriculum and personalised learning go hand in hand. it prepares children for the next stage of their life and is for all learners including those with learning disabilities (ankam et al. 2019). competency-based curriculum was developed as an educational trend in the united states. canada is one of the countries that implemented the competency-based curriculum. the goal of competency-based curriculum in canada was to reduce the existing gap between what is prescribed in programmes of study and what really happens in the classroom (griffith 2021). a review of competency-based curriculum to evaluate its successes on general basic adult education, through analysis of actions of students in context as well as the resources was carried in canada. the evaluation found out that competency-based learning needed a lot of resources to address everyday problems that were not traditionally associated with school subjects. china also adopted competency-based curriculum in 2005 aiming to cultivate student competencies in practical situations in primary and secondary education (fein 2015). review of the chinese competency-based curriculum found out that it was more political than pedagogical. guatemala has been implementing a competency-based curriculum from preschool to secondary education. the guatemala competency-based curriculum is embedded in the ongoing expansion and democratisation of learning conditions and opportunities. a review of guatemala competency-based curriculum also indicated that it needed a lot of resources and it was time consuming. most african countries (e.g. tanzania, rwanda, kenya, zimbabwe) have recently incorporated competency-based curriculum into their education system. however, it has not been widely disseminated or implemented in many classrooms because of the varied educational challenges affecting african countries (unesco 2015). in 2014, the zimbabwean ministry of primary and secondary education embarked on a comprehensive curriculum reform process meant to enhance the quality of education in zimbabwe (manokore 2022). it adopted competency-based curriculum in 2017 as a vehicle to motivate learners to cherish their zimbabwean heritage, history and cultural traditions and prepare them for participatory citizenship (manokore 2022). the zimbabwean government is yet to make a review of its competency-based curriculum. zimbabwe has signed the united nation’s convention on the rights of persons with disabilities (uncrpd) and, therefore, has legally adopted the un definition of learners with a learning disability. the united nations defines learning disability as a neurodevelopmental disorder that affects an individual’s ability to acquire, process and retain academic skills despite average or above-average intelligence and sociocultural opportunities (american psychiatric association 2013). it is characterised by significant and persistent difficulties in one or more areas of learning, such as reading, writing, mathematics or comprehension. these difficulties stem from a variety of underlying factors, including but not limited to, cognitive processing deficits, attentional difficulties and language impairments (fletcher et al. 2019). the impact of learning disabilities can vary widely, with each individual presenting unique challenges and strengths. early identification, appropriate interventions and accommodations are crucial in ensuring that individuals with learning disabilities receive the necessary support to succeed academically and reach their full potential (fletcher et al. 2019). learners with learning disabilities should be educated in general education classrooms and learn the same content with their peers (hove & phasha 2023). assessment of learners with disabilities usually takes a multidimensional perspective. multidimensional perspective in assessment of learning disabilities takes into account the primary factors contributing to the child’s learning problems as well as interaction of these influences on learning. in other words, the assumption is that learning disabilities may result in neuropsychological, developmental and behavioural factors. an in-depth assessment of all contributing factors is necessary for effective interventions. teachers should be in a position to modify teaching approaches (haleem et al. 2022) and an enabling environment that is welcome has to be created within the education system. teachers must be equipped with relevant and effective teaching skills of the inclusive classes. to cater for unique needs of the learners with learning disabilities, the individual educational plan (iep) is an important tool (allison & robison-young 2016). in the iep, longand short-term goals suitable for the learner are set. if there is no progress made, the iep is modified or discarded to come up with a realistic goal. statement of the problem competency-based curriculum is a type of learning that is aimed at ensuring that students acquire knowledge and skills that are deemed to be essential to success in school, careers and adult life. it is a system of instruction, assessment, grading and academic reporting based on students demonstrating that they have learned the knowledge and skills they are expected to learn as they progress through their education. in zimbabwe, competency-based curriculum was developed in 2014 and the implementation commenced in 2017. zimbabwean teachers are implementing competency-based curriculum. competency-based curriculum is giving a lot of challenges to zimbabwean teachers, and since its inception, no evaluation on its success and challenges has been done by the zimbabwean ministry of primary and secondary education. there is also little achievement in the skills development in mainstream schools in zimbabwe (manokore 2022). this study explored challenges faced by teachers in the implementation of competency-based curriculum for learners with learning disabilities in mhangura of makonde district in zimbabwe. research methods and design this article used a qualitative method for exploration of challenges faced by teachers in the implementation of competency-based curriculum for learners with learning disabilities in zimbabwe using a variety of data sources (creswell 2014; eatough & finlay 2012). the qualitative research approach ensured that exploration of challenges faced by teachers in the implementation of competency-based curriculum for learners with learning disabilities is not examined through a single lens, but rather through different lenses, which allows rich data to be collected on aspects of the phenomenon to be revealed and understood (castillo-montoya 2016; creswell 2012). a qualitative research method was chosen because it allowed the researchers to provide a rich and vivid description of challenges faced by teachers in the implementation of competency-based curriculum for learners with learning disabilities. the qualitative research approach design also enabled the study participants to air their views on experiences and voice challenges faced by teachers in the implementation of competency-based curriculum for learners with learning disabilities (chowdhury 2015). information obtained from this study was treated as the real experiences of the participants; therefore, relevant conclusions were drawn about the phenomenon under study. research design the case study design was preferred for its ‘…ability to investigate complex social phenomena and to handle dense data’ (glette & wiig 2022). the study used a single case study as its research design (leelarungrayub et al. 2020). a single case design is differentiated from a multiple case study in that multiple case study designs study two or more cases (yin 2018). a single case study was relevant to this study. a case study analyses a single unit – in this study, competency-based curriculum in teaching learners with learning disabilities. individual interviews are a valuable research method within the framework of single case studies because of their ability to provide in-depth insights into a particular phenomenon (yin 2014). in this study, a single case study enabled the researchers to obtain a detailed exploration of challenges faced by teachers in the implementation of competency-based curriculum to learners with learning disabilities in real-life settings (ruth & ramadas 2019). in the context of this study, individual interviews and focus group discussions were conducted with multiple participants, who possess unique perspectives and experiences related to the challenges faced by teachers in the implementation of competency-based curriculum for learners with learning disabilities (elliott & timulak 2015). by conducting multiple interviews and focus group discussions, the researchers gathered rich and detailed data about each individual’s perceptions, thoughts and experiences, allowing for a more comprehensive understanding of the challenges faced by teachers in the implementation of competency-based curriculum for learners with learning disabilities. this study used only one data source and this limits the depth and breath of analysis, leading to potential bias. setting participants were drawn from mhangura in makonde district, which is the provincial capital of the mashonaland west province in zimbabwe. the study was specifically undertaken in mhangura of makonde district because it is one of the districts that pioneered the implementation of competency-based curriculum in zimbabwe. mhangura is predominantly a farming area with an estimated population of 1000 teachers. the collapse of industries and poor performance of the agrarian sector in zimbabwe contributed to poor social services for learners with disabilities as the country is running on a stringent budget (mpofu 2023). institutionalised social services for learners with learning disabilities such as special schools and resource centres were closed as they demanded huge resources from the national budget (mpofu 2023). the government could not sustain their costly overheads (e.g. lower teacher-student ratios, specialist counsellors, teachers and equipment) and hence opted to involve communities to manage the needs of some of its people with disabilities (mpofu & shumba 2012). communities such as mhangura were called in to take care of those with mild to moderate disabilities (mpofu 2021). the zimbabwean government encouraged these communities to be inclusive and designed never-ending strategies to effectively address diversity in these communities by identifying and removing barriers to community adjustment, development and participation (mpofu 2021). study sample and sampling strategy the authors purposefully sampled nine (five females, four males) participants to participate in this study. this study included participants who were teachers teaching classes with learners diagnosed with learning disabilities but learning in mainstream classes in mhangura of makonde district, mashonaland west province in zimbabwe. this sample was drawn from teachers who were pioneers in the implementation of competency-based curriculum in the country. to be included in the study, the teachers were supposed to have learners with learning disabilities in their classes for an intermittent period of 2 years. the sample was also adequate for a study that used interviews as its data collection tool. the sample also enabled the researchers to achieve data saturation (creswell 2012, 2014). table 1 provides additional demographic details. the names in the table are pseudonyms used for the purpose of this study only. table 1: demographic information of research participants. data collection consistent with the qualitative research methodology, this study adopted the use of open-ended interviews and focus group discussions to collect data (elliott & timulak 2015). participants responded to one-on-one interview questions based on a prepared interview schedule on how teachers perceive challenges of the implementation of competency-based curriculum to learners with learning disabilities. the same participants were also engaged in two focus group discussions where they discussed their perceptions on challenges of the implementation of competency-based curriculum to learners with learning disabilities. this approach specifically aimed to facilitate accessing experiences and voices of teachers’ challenges in implementation of competency-based curriculum to learners with learning disabilities in mhangura of makonde district in zimbabwe (elliott & timulak 2015). the interviews were recorded using a mobile phone, with each interview lasting between 60 and 90 min. the interviews were conducted, transcribed and analysed by the first author. data analysis strategies data analysis was done using the thematic content analysis approach (etikan et al. 2016). the first stage involved becoming familiar with the data. this was done through listening to and transcribing of the interviews. the second stage involved creating codes linked to research goals by identifying keywords and sentences (etikan et al. 2016). the third stage involved grouping codes into themes and the last stage involved reviewing themes, labelling them and selecting appropriate quotes to represent the themes identified from each transcript. in carrying out the analysis, coding was not only data driven but also influenced by the study’s aim (etikan et al. 2016). rigour of the study to ensure rigour of this study, we checked for credibility, dependability, confirmability and transferability (fusch & ness 2015). to enhance the credibility of our study, we prolonged the engagement of our participants through engaging them in interviews that lasted more than an hour. we also triangulated the nine interviews held and two focus group discussions to produce a more comprehensive view of the phenomenon being studied. we also allowed peer debriefing in this study in order to see agreement in data labels and the logical paths taken to arrive at those labels. we also allowed member checking in this study (fusch & ness 2015). we allowed participants to read the transcription of their interviews and focus groups to ensure that these had been accurately recorded and were therefore credible (guest, macqueen & namey 2012). in addition to credibility checking, we also checked for the study’s dependability and confirmability by making an audit trail to our study and authors’ reflexivity. we also provided thick description throughout our study to check for the transferability of our study. ethical considerations ethical approval for the study was obtained from the ethics committee of the zimbabwe open university. ethical review board of the zimbabwe open university provided ethical clearance prior to commencing the study: #6001/23. standard ethical principles of informed consent and voluntary participation, protection from harm, confidentiality and privacy, were adhered to throughout the research process and data collection and analysis. assurance was given that no person would be identified. findings the findings of this study are divided into four main themes: negative attitudes towards learners with learning disabilities. poor teacher preparation. inadequate resources. stakeholder collaboration. negative attitudes towards learners with learning disabilities most participants (n = 7) in this study reported that negative attitudes from both teachers and community members towards learners with learning disabilities were contributing to challenges in effective implementation of competency-based curriculum for the benefit of learners in their classes. the following are verbatims obtained from the study interviews: female (f), years in service (y), not trained in competency-based curriculum (ntcbn). tracy stated: ‘… also negative attitude of the community and teachers hinders the implementation of competency-based curriculum at this school. parents have negative attitude towards learners with disabilities, they think it’s a waste of money and resources to invest in their education. they just bring their learners, dump them here, they don’t pay fees, they don’t buy exercise books. with all this it becomes difficult to implement competency-based curriculum.’ (f, 10 y, ntcbm) gift added: ‘to start with let me say parents have developed negative attitude towards competency-based curriculum. they look down upon it saying it has made education expensive than before, especially with the issue of continuous assessment learning activity (cala). parents are not contributing much resources, this then makes the implementation of competency-based curriculum difficult.’ (m, 1 y, ntcbm) beverly also submitted that: ‘discrimination and stigmatisation from teachers, other learners without disabilities and community’s negative attitude towards learners with learning disabilities is one of the barriers to successful implementation of competency-based curriculum. let me say because of lack of knowledge that disability is not inability teachers, learners and community at large are not prepared to accept learners with disabilities. until society attitude towards learners with disabilities changes competency-based curriculum will remain difficult to implement for learners with learning disabilities.’ (f, 9 y, ntcbm) poor teacher preparation participants from this study (n = 7) also indicated that they were not trained to implement competency-based curriculum, and this was a great challenge to their implementation of the curriculum and putting more risks to learners with learning disabilities. paul has this to say: ‘the problem is most of the teachers here if not all of them lack in service training in competency-based curriculum hence most are still using the old teaching approach. in service enhances skills of how to implement competency-based curriculum for learners with disabilities. without relevant skills teaching is hampered and would not be meaningful. we really want to implement competency-based curriculum but we lack the pedagogy.’ (m, 17 y, ntcbm) patience also added: ‘a number of teachers here are still using the old teaching approach and same teaching materials from the previous year’s instead of adopting competency-based curriculum teaching methods. we were not trained in competency-based curriculum hence we lack methodologies. competency-based curriculum is tiresome in terms in terms of materials and this affect effort towards its implementation.’ (f, 4 y, ntcbm) and john submitted: ‘… also, teachers here did not receive training in competency-based curriculum. this limit their pedagogical knowledge and skills to implement competency-based curriculum. you know with lack of knowledge teachers fail to deal with complex learning problems such as those of learners with disabilities.’ (f, 5 y, ntcbm) gift narrated: ‘competency-based curriculum to learners with disabilities still remains a realm of theory and far from practice at this school. teachers were not trained in competency-based curriculum don’t know how to handle learners with disabilities and teaching them becomes a challenge. competency-based curriculum is overloaded. and this have negative consequences for both the teacher and the learners.’ (m, 1 y, ntcbm) ebenezer alluded that: ‘the other issue is we were not trained in competency-based curriculum. even our administrators were not. they are not knowledgeable about the practices and facilities that need to be made available to implement competency-based curriculum. they lack even the assessment rubrics and this have impact on its implementation. teachers also lack understanding of competency-based curriculum this forces teachers to ignore it. if you move around and look at their schemes of work, you will see that they do not reflect the qualities of competency-based curriculum.’ (m, 7y, ntcbm) beverly submitted that: ‘we do not have specialist teachers to help us in handling learners with disabilities in the implementation of competency-based curriculum school.’ (m, 9 y, ntcbm) and charity also: ‘it is a challenge implementing competency-based curriculum especially to learners with disabilities. we do not have specialist teachers to guide us in teaching learners with learning disabilities. we lack knowledge on how to handle learners with learning disabilities. competency-based curriculum requires a unique set of competencies such as knowledge and skills of teaching strategies that meet the needs of learners with learning disabilities. its unfortunate; we were never equipped with them.’ (f, 6 y, ntcbm) lack of resources most participants (n = 5) who responded to the interview indicated that they were lacking resources to adequately meet and successfully implement competency-based curriculum especially when it comes to learners with disabilities in their mainstream classes. paul added: ‘… also, unavailability of appropriate teaching and learning materials hinder the implementation of competency-based curriculum. at this school we do not have enough textbooks to satisfy the increased number of students at this school. book student ratio is 1:10. you can imagine how challenging the situation can be. just imagine learners with learning disabilities sharing one book. learning can never be effective. to add on the issues of resources we don’t have laboratories where we conduct practical lessons. learners just learn theories and principles yet competency-based curriculum is fully packed with experiments.’ (m, 17 y, ntcbm) patience said: ‘on the issue of resources, we do not have computer labs, photocopiers just to mention a few. it then becomes difficult to implement it. the admin is failing to buy chalks what more of textbooks. learners with disabilities need time with their teachers but here is like most teachers have more than 40 learners in class. i have 60 learners 38 for grade 4 and 22 for grade 4, it is a composite class. this then becomes a challenge in implementing competency-based curriculum.’ (f, 4 y, ntcbm) she went on to add: ‘… our classrooms are not enough and we do not have adequate textbooks. in some classes there is only one text book per subject and at primary level this is just a mockery especially looking at the requirements of competency-based curriculum. our school is poor; we sometimes fail to buy chalks. parents are failing to play their role because of poverty. they cannot combine their resources with that of the school to promote the implementation of competency-based curriculum.’ (f, 4 y, ntcbm) john added: ‘the greatest challenge here is that of large classes. teacher learner interaction is hindered and learner to learner interaction do not take place effectively. with higher density classes the teacher fails to know the learning styles of learners especially those with disabilities. the classes are too big for the implementation of competency-based curriculum. it actually means the teacher has limited time to attend to all the learners. resources are a challenge in implementing competency-based curriculum. due to lack of funding the school fails to buy simple things like pens for teachers. this makes the implementation of competency-based curriculum difficult.’ (m, 5 y, ntcbm) ebenezer contributed by saying: ‘the government is not providing us with the resources to effectively implement competency-based curriculum for learners with disabilities. the ministry of education wants us to implement competency-based curriculum and where to get the resources is it’s our baby to nurse. learners are not paying fees and there is no way we can force them to pay. we do not have enough classrooms where learning can take place effectively. most of the time learning. takes place outside the classroom, we do not have laboratories to carry out experiments.’ (m, 7 y, ntcbm) stakeholder collaboration the study participants also cited a lack of collaboration between major stakeholders in teaching and learning of learners with learning disabilities in their mainstream classes. the cited stakeholders were the government and schools’ psychological services, parents and teachers. paul said: ‘we do not have functional psychological and welfare services. we only hear that there are school psychologists but we have not seen them here. learners with disabilities need counselling here and there. no psychological and social services officers ever visited this school to offer professional guidance and counselling support services to special needs learners.’ (m, 17 y, ntcbm) and the following is a verbatim from patience: ‘another challenge is that teachers were not much involved in developing competency-based curriculum therefore they are not willing to contribute in things they were not much involved. this then becomes a problem in implementing competency-based curriculum.’ (f, 4 y, ntcbm) john added: ‘… lack of parental involvement is another challenge. parents are much involved in farming to the extent that they do not have time to be involved in school things and they do not understand what competency-based curriculum is all about.’ (m, 5 y, ntcbm) and gift contributed by saying: ‘i do everything here i play the role of schools psychological services by assessing the developmental progress of the child. i teach the child and help her do homework as well. this is very tiresome we must work together as stakeholders to help the child. remember this is not a special class but mainstream class.’ (m, 1 y, ntcbm) beverly also said: ‘lack of parental involvement is putting a lot of us under pressure here, there is need for their support especially on the issue of resources but because they also lack knowledge on competency-based curriculum they have withdrawn giving a helping hand. they are claiming this approach has made education expensive considering their poor economic status, they are unemployed as a result of country’s economic meltdown. there is also shortage of human resources at this school, for example most of my time i spend it on administrative work than the important work i have come here to do.’ (f, 9 y, ntcbm) charity added: ‘it is difficult to implement something we were not involved in its crafting, very difficult especially when dealing with learners with disabilities. you know involvement in the initial stages promotes ownership of change and innovation. we were not involved in the initial stage hence we lack intrinsic motivation to implement competency-based curriculum especially to learners with learning disabilities, because it is not an innovative, we designed, it is something which was imposed on us.’ (f, 6 y, ntcbm) discussion of findings negative attitudes the study found out that the implementation of competency-based curriculum towards teaching of learners with learning disabilities was being affected by the teachers’ negative attitudes towards learners with disabilities. teachers admitted that together with parents of learners with disabilities, they have negative attitudes towards learners with disabilities and hence it was one of their challenges. their position suggests that they have religious or cultural beliefs that are negative towards learners with learning disabilities. these beliefs were hindering them in providing competency-based curriculum to learners with learning disabilities in their classes. teachers’ attitudes are essential elements of professional competence (gebhardt et al. 2015). positive attitudes towards inclusion have a significant role in the implementation of any school curriculum (gebhardt et al. 2015). a number of researches have indicated that negative attitudes of teachers towards those with disabilities compromise teaching and learning of learners with disabilities. negative terms that are used by teachers to refer to learners with learning disabilities reflect how teachers perceive and teach learners with disabilities. the terms that are used by wider society to describe persons with learning disabilities tend to be negative. this makes the implementation of competency-based curriculum for learners with learning disabilities in mainstream classes a challenge for teachers (gebhardt et al. 2015). although study in nigeria showed that teachers’ attitude to students with special needs had greatly improved as a result of workshops, seminars and conferences attended by teachers, the study also found out that most teachers still had negative attitudes to students with special needs. poor teacher preparation all the participants in this study indicated that competency-based curriculum was just imposed on them. they said they were not trained to implement it and were just implementing it from the heads’ feedback from the ministry of primary and secondary education through announcements and circulars. their heads were not trained or inducted in competency-based curriculum too. they said this was presenting them with challenges especially in classes with learners diagnosed with learning disabilities. they explained that they have no competency-based curriculum pedagogy and some are just teaching it like they used to do with the old curriculum. lack of training in the implementation of competency-based curriculum was also cited as a major challenge in the implementation of competency-based curriculum in classes with learners with learning disabilities. idah (2017) conducted a research on the effectiveness of teacher preparation in the implementation of competency-based curriculum using student teachers and found out that teachers who were exposed to competency-based curriculum as part of their training were facing few challenges in the implementation of competency-based curriculum. such teachers were found to be very patient and respectful to the needs of their learners. a good teacher is a friend, a master and has an excellent subject knowledge (idah 2017). a good competency-based curriculum teacher makes learners understand the teaching material, objectives, pays attention to the learners and helps learners with their problems while encouraging them. the same researcher (idah 2017) found out that teachers who are not trained in any form of curriculum regularly check learners’ achievement, consistency, discipline them, keep the school rules, deal with the most talented students, play on the lessons and give a lot of homework without teaching. therefore, this brings out the importance of training of curriculum before implementation. if implemented, there is a need for in-service training. inadequate resources most participants mentioned that they lacked resources in the implementation of competency-based curriculum to learners with learning disabilities. they mentioned that the book student ratio is 1:10, and they do not have physical resources such as laboratories to carry out experiments and that they lack simple provisions such as chalks and this hinders the implementation of competency-based curriculum to learners with learning disabilities who need adequate resources in their learning. chinangure and chindanya (2019) concur that when schools undermine facilities, performance of teachers in teaching learners with learning disabilities suffers. competency-based curriculum requires education institutions to supply adequate learning resources such as modern classrooms, laboratories and latest technology at all levels. facilities help teachers to teach effectively, and they are requisites of competency-based curriculum. without enough facilities, teachers cannot effectively help learners to develop independent learning skills and problem-solving skills. this problem of lack of resources affects students and teachers, which in turn can affect the parents of the children (maffea 2020). the lack of resources in classrooms can cause extreme distress on the students and teachers. not only are the students and teachers in distress but also they are unable to learn to their fullest potential because they are not being given the proper resources (maffea 2020). the participants also echoed that there were low human resources at their school. low human resources in terms of teachers make them teach big classes that are not compatible with learning needs of learners with learning disabilities. they said learners with learning disabilities need reasonable teacher-pupil ratio that enables them to interact well with their learners. some indicated that they teach classes with more than 60 learners, and within these classes, they have learners with learning disabilities. to them, this creates fatigue and mirror teaching, which is not of great benefit to them and the learners too. the findings are similar to the findings of various different researchers, who state that when a large group of learners are combined in one classroom, teachers do not teach effectively and get fatigued with their job, and this puts learners with learning disabilities at more risk (chinangure & chindanya 2019). bottiani et al. (2019) also noted that even for teachers who are highly skilled and have a myriad of personal resources, decision-making and teaching practices may be hindered by stress and burnout arising from high demands and low organisational resources. furthermore, these teachers stand in front of a class of around 20–30 students a day and have to deal with the children themselves, the lesson plan and the lack of resources. the job itself already takes a toll on them, and when the stress of teaching in a classroom with not enough resources is added, it can lead the teachers to lose their passion. once this happens, the students are the ones who suffer the consequences. stakeholder collaboration the study results also showed that there was no effective collaboration in the implementation of competency-based curriculum in schools. the findings suggest that there is a need for good collaboration between major stakeholders to obtain effective implementation of competency-based curriculum in schools. competency-based curriculum in inclusive education setting cannot be implemented successfully without collaboration-based relationships (avalos-bevan & bascope 2017; hall & wurf 2018; zagona, kurth & macfarland 2017). for teachers and other stakeholders to successfully implement competency-based curriculum in inclusive education in schools, they need to collaborate (hall & wurf 2018; zagona et al. 2017). successful execution of competency-based curriculum in inclusive education means stipulation of quality education and assurance that the needs of learners who experience learning barriers are met. therefore, teachers and other support personnel need to collaborate for the successful implementation of competency-based curriculum (da fonte & barton-arwood 2017). keef and moore (2004) concur with the above findings by confirming that in order to reduce the burden from teachers in teaching learners with special needs in mainstream class settings so as to meet their needs, there is a need for effective stakeholder collaboration. the authors (keef & moore 2004) went on to cite teachers’–parents’ government learner support unit and special teachers as important people in education settings that are inclusive in nature. gately and gately (2001) also suggest that collaboration teaching at the elementary level is important. jackson, ryndak and billingsley (2000) note that at the secondary level, collaboration makes teaching enjoyable and learning successful to learners with disabilities in mainstream schools. limitations of the study this study followed a single case study design. case studies are known for being subjective, biased, or lacking in rigor. in order to address these limitations, data collection was through interviews and focus group discussions. there was also prolonged engagement with participants. we are aware that case study results are not generalisable, and therefore suggest that results from this study only be applied to cases similar to ours. conclusion this study concluded that mainstream class teachers with learners with learning disabilities in mhangura of makonde district in zimbabwe were facing challenges in the implementation of competency-based curriculum in their classes, especially when it comes to help learners with learning disabilities. respondents cited that the negative attitudes they hold towards learners with learning disabilities, poor teacher preparation, lack of teaching and learning resources and weak collaboration from relevant stakeholders are the major challenges in the implementation of competency-based curriculum in their classes. study recommendations basing on the study findings, this study recommends the following recommendations: there is a need to provide inclusive education in-service training to zimbabwean teachers. this inclusive education service training will assist teachers in understanding the learning needs of their diversified learners. the study also recommends adequate resources for smooth implementation of competency-based curriculum in zimbabwean mainstream schools. there is also a need for effective collaboration in the implementation of competency-based curriculum in zimbabwean schools. all stakeholders must be involved in the implementation of competency-based curriculum especially where there are learners with special needs. acknowledgements the authors acknowledge teachers who participated in the study. competing interests the authors have declared that no competing interest exists. authors’ contributions j.m. conceptualised the article, carried literature review, design data collection instruments collected data analysed data wrote first and final drafts. m.m.s. conceptualised the study layout, reviewed the study, results, supervised the study and reviewed first and final drafts. funding information the research was pdrf funded. data availability the data that support the findings in this study are available from the corresponding author dr jabulani mpofu upon 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yin, r.k., 2014, case study research: design and methods, 5th edn., sage, thousand oaks, ca. yin, r.k., 2018, case study research and applications: design and methods, 6th edn., sage, thousand oaks, ca. zagona, a.l., kurth, j. & macfarland, s.z., 2017, ‘teachers’ views of their preparation for inclusive education and collaboration’, teacher education and special education 40(3), 163–178. https://doi.org/10.1177/0888406417692969 abstract introduction and background ubuntu as inclusion ubuntu among the zulu culture through hannah arendt’s lens research methodology findings from the field discussion and recommendations conclusion acknowledgements references about the author(s) sindile a. ngubane-mokiwa college of graduate studies, university of south africa, south africa citation ngubane-mokiwa, s.a., 2018, ‘ubuntu considered in light of exclusion of people with disabilities’, african journal of disability 7(0), a460. https://doi.org/10.4102/ajod.v7i0.460 original research ubuntu considered in light of exclusion of people with disabilities sindile a. ngubane-mokiwa received: 21 nov. 2017; accepted: 29 aug. 2018; published: 29 nov. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: this article emanates from a study funded by the kwazulu-natal chapter of south africa’s national research foundation on the ‘archaeology of ubuntu’. it explores the notion of ubuntu and disability in a group of zulu people from four communities within kwazulu-natal. the study is based on the notion that ubuntu is humaneness. being human is linked to notions of care, respect and compassion. objectives: the article explores the treatment of people with disabilities from the elders’ perspectives in this community. method: this article is based on qualitative data resulting from structured interviews conducted in the kwazulu-natal province between february and march 2015. results: the results reveal that society considered the birth of a disabled child as a curse from god and punishment from the ancestors. the results also indicate that people with disabilities were excluded from community activities; marrying a disabled person was unthinkable because they were stigmatised and dehumanised. the work of hannah arendt is used to interrogate people’s perceptions of others with disabilities in their communities. conclusion: the article posits that treatment of people with disabilities is not cast in stone but can be renegotiated and restructured through community engagement to represent genuine inclusion. introduction and background ubuntu is an african view that grounds societies that embrace communal ways of living. this means that one is not considered a human being unless one is concerned about the well-being of other people. one of the main characteristics of ubuntu is communality or communal well-being. this principle is based on the nguni saying: umuntu ngumuntu ngabantu [a person is a person through other people]. letseka (2012) postulates that ubuntu is based on the etiquette of humanity, which includes caring for each other’s well-being and reciprocating kindness. louw (2003) sees ubuntu as more than just being who you are through others; he extends ubuntu to how people relate to others around them. louw’s concept of ubuntu emphasises the importance of having a mutual understanding of how people treat each other. different authors have defined ubuntu as the ethic of care (waghid & smeyers 2012) and ‘a theory of right action’ or ‘moral theory’ (letseka 2000; metz 2007; teffo 1994), as a pedagogical principle (letseka 2013) and as a constitutional and jurisprudence principle (mahao 2010; mokgoro 1998). as ubuntu concerns the way in which people treat each other, this article focuses mainly on the treatment of people with disabilities living in the zulu cultural communities. the main research objective guiding the study was to establish how such people were treated. the research also sought to investigate how the traditional elders within these communities understood and practised ubuntu with regard to people with disabilities. this article is divided into five sections. in the first section, i introduce the philosophy of ubuntu and how people with disabilities have been treated in the selected communities. in the second section, i describe the research methodology that guided this qualitative research study, which was conducted through oral histories and structured interviews. this section also presents the manner in which ethical considerations, sampling techniques and data analysis were tackled. in the third section, i present findings, using verbatim quotes from the research participants with the aim of indicating the link between ubuntu and disability. in the fourth section, i discuss the research findings, making some recommendations for how people with disabilities should be better included and treated, according to ubuntu principles. lastly, a conclusion is drawn. the exclusion of children with disabilities is not a practice limited to african society: peter singer, a bioethicist, argued that the trouble of disability for the child and the parents further outweighed emotional choices, judgements and the communities’ socio-economic realities (singer 1992). singer’s utilitarian argument did not go unchallenged as it was based on a negative perception of people with disabilities. harriet mcbryde johnson, an activist with a disability, questions whether her existence with a disability causes her to live a miserable life. she asserts that people with disabilities have the same feelings as other people and also have their own unique ways of doing things, her main argument being that ‘the presence or absence of disability doesn’t predict quality of life’ (johnson 2003). ubuntu as inclusion in forming a basis for the position of this article, i first define the parameters within which the concept of inclusion is discussed. these include access, participation and school governance, curriculum and identity (sayed et al. 2007). in this context, access would mean that people with disabilities participate meaningfully in all community activities. that would include the birth celebrations, initiation ceremonies, weddings, all forms of traditional dances, choosing marriage partners, becoming parents and grandparents. participation in governance by such people would mean that they too can contribute towards lawmaking processes and that they can contest and be elected to leadership positions as well as have their views respected in the community. curriculum, in the case of the community, refers to the different life stages that each child is initiated into and taught about through oral tradition and teachings hidden in idioms and proverbs. in the case of the amazulu, a child with a physical impairment would have to be afforded the opportunity to go through initiation. because identity formation is a crucial element of any living human being, communities with ubuntu values would have to find ways of ensuring that their identity perceptions do not make those who differ from the norm feel devalued. in discussing inclusion, one cannot avoid discussing what would amount to exclusion in a communal context. according to sen (2000), exclusion concerns the way people with disabilities experience being among other people, how the former are excluded from participation in pedagogical, economic, social and political activities and are subjected to systemically engineered exclusion from equal development opportunities. ubuntu among the zulu culture through hannah arendt’s lens the views of community elders on how people with disabilities were treated, as collated from the kwazulu-natal areas of umgungundlovu, ethekwini, kwahlabisa and umtubatuba, are presented in this article. the cohort of elders comprised three males and six females aged between 65 and 97. to understand the practices as expressed by the elders, i use hannah arendt’s (1958) lens of critical and political theory, with reference to humanness. arendt (1958:32–33) argues that societies are made of distinctive human beings who form an organised entity. she postulates that in this structure there are powerful community members who determine the rules and regulations of how people should behave. in this regard, the lawmakers need to be clear on how the community should behave towards the vulnerable members of the community, including children, women and people with disabilities. arendt suggests that community rules should be made with the realisation that human frailty is a universal phenomenon (siebers 2007). this means that disability is not confined to certain people; anybody could find themselves having to deal with it in their family or at a certain stage of their life. arendt makes a call to ensure that all community norms are based on the right to full political participation. this plea resonates with the principle of ubuntu as identified by sayed et al. (2007), who assert that people with disabilities should also participate in governing societal practices. arendt’s existentialism is considered adequate as a lens to analyse the ubuntu philosophy among the zulu culture. for arendt’s existentialism to be able to operate, the societal system should recognise people with disabilities as equal beings within the community. for this to happen there should be differences in the way humanness is identified. humanness would need to transcend ability and similarity in bodily features. humanness would also need to accept multidiversity in terms of physical traits (skin complexion, height, weight, presence or non-presence of limbs, functional or non-functional limbs, etc.), sensory capacities (hearing, vision, etc.) and so on. humanness, which the elders equated to ubuntu, should be about acceptance of another human being in all shapes and forms, affording people with disabilities the same care, dignity and teachings that will make zulu society into abantu abaqotho [principled people with ubuntu values]. research methodology this article is based on qualitative data resulting from structured interviews conducted in the kwazulu-natal province between february and march 2015. the sample of three elderly men and six elderly women between the ages of 65 and 100 who participated in the study was drawn through purposive sampling. while this article is based on data obtained from the said province, in particular, the wider study covered southern african countries such as botswana, lesotho, namibia, swaziland, zambia and zimbabwe. it also covered four provinces in south africa: kwazulu-natal, limpopo, mpumalanga and north-west. the qualitative study is based on oral historical conversations, mainly structured interviews with a group of zulu people from the four communities mentioned within kwazulu-natal. according to jewsiewicki and mudimbe (1993), ‘oral historiographies from a sense of the past creates a link between the past, the present, and the future of africa’. they further state, ‘oral historiographies have always been bearers of norms and of logical systems for the interpretation of the past’. vansina (1985) points out the strength of using oral historiographies when documenting historical events from traditional societies. traditional societies are known to be resourceful in narrating historic accounts, hence creating a link between ‘the past, the present and the future of africa’ (jewsiewicki & mudimbe 1993). vansina (2006) argues that those who can read and write nevertheless regard oral historiography as a valuable research method. initially, the researchers had planned to engage 20 elders, comprising 10 males and 10 females. however, ultimately they only engaged with nine elders consisting of six females and three males. some of the elders originally identified were ill and could not articulate themselves clearly, while a few of the others were not available. table 1 illustrates the elders’ pseudonyms, their real gender and age. table 1: profile of the research participants (community elders by gender and age). ethical considerations this research study on the ‘archaeology of ubuntu’ was conducted after obtaining consent from the university. the committee is guided by the research ethics guidelines laid down by the university. the policy calls for researchers to be ‘competent and accountable’, to have ‘integrity’, to conduct research that seeks to benefit society, develop ‘knowledge creation’, to prevent ‘harmful consequences’ and ‘misuse and misrepresentation’ of their research work. it further assigns to the principal researchers the responsibility of ensuring ‘ethical conduct’ by research juniors. this research policy also binds researchers to afford the research participants their rights, sovereignty and right to benefit from research (seidman 2013; unisa 2013). the research participants voluntarily participated in the study with the guarantee that their identity would not be divulged as per the ethical requirements. pseudonyms are used to safeguard the real identity of the participants. to avoid any issues such as ‘everyday memory problems’ (vemuri 2004:202) the interviews were audio recorded. the recordings were transcribed and translated from isizulu to english by a fluent isizulu and english speaker. data were sorted and quality-checked by the kwazulu-natal project co-investigator, who is also a fluent isizulu speaker. the data were analysed through thematic analysis (braun & clarke 2006). this study was conducted with ethical consent from the university of south africa, college of education ethics committee (ref. number: 2014 july/90076087/mc). findings from the field this section presents findings of the study, based on the views of elders, on how people with disabilities were treated in the traditional communities. verbatim quotes are presented in order to demonstrate the authenticity of data and express the elders’ views in their own words. however, it must be noted that the verbatim quotes have been translated from the isizulu language (the language spoken by the elders) into english. exclusion at birth among the nine elders, three revealed that children who were different from the norm would be killed at birth. the reasons that were given for this act were that these children were a curse from god. it was also believed that parents gave birth to a child with a disability because the ancestors were punishing them for wrongdoing. victims of this exclusion included those who had a light complexion (people with albinism), those with any facial defects such as a cleft lip, those who had extra limbs or were missing limbs as well as those who demonstrated any sign of abnormality variance from the societal norm within a community. ‘when an unusual child was born, they would be killed without the mother knowing. this was done because it was believed that the disability was a curse from god and punishment from ancestors for a wrong committed by the parents.’ (interviewee gogo a, female, 85 years) this elder further indicated that these forms of exclusion from the community were carried out in order to safeguard the community from calamities such as drought, earthquake and floods. those who performed the killings were trusted to have a better understanding of what was best for the community. when asked if these practices were part of ubuntu, she said: ‘the way the disabled child was dealt with was inhumane but it used to happen.’ (interviewee gogo a, female, 85 years) the response indicates hostility towards the powerless but the elder did not answer directly as to whether the act of killing was congruent with ubuntu or not. in another community, elders revealed that if a disabled child had been born the parents were informed. the onus was then upon the parents to decide whether to keep the child or not. gogo b narrated: ‘it depended on the parent, the mother of the child. when god gave you a disabled child (isidalwa) you were to care for it forever and not go around complaining, you will stay with that child as a normal child. if god decided to take the child then it is god’s will.’ (gogo b, female, 79 years) there were cases of conflict regarding the parents’ decision to keep the disabled child. in some cases the mother who had decided to keep and care for her or him was occasionally abandoned by the husband and his family. where a child was accepted in the family, his or her treatment was in some instances subhuman. the child was discriminated against and isolated from family and community functions. gogo c explained that: ‘these people with disabilities who could not do anything for themselves and could not talk, in the past they used to be hidden in the house from the public’s sight. if there were an event or function at home they would be locked alone in one of the rooms until the function or event was over; that’s when she or he would be released from the room. some were not even bathing; they were in trouble. you would find these disabled children … stinking with dirty clothing and begxaza amathe [drooling uncontrollably]. no one cared about them, not even the mother.’ (gogo c, female, 95 years) interviewee gogo d revealed in addition that: ‘the parents of the disabled child and their child were isolated or excluded from community activities.’ (gogo d, female, 67 years) when the researchers asked if this kind of treatment was portraying ubuntu, gogo c said: ‘it was not ubuntu my child, because these people were locked in the house for their whole life. the neighbours knew that there was a child who was not well in that house but they kept quiet; they kept quiet and never said anything. maybe there is a celebration or a wedding by the neighbour and it is known that this child is abused; she gets locked in the house and given water, saying, here is some food, eat while we are away and when you sleep, sleep on the floor. the child would be woken up when the family gets back later on.’ (gogo c, female, 95 years) this statement reveals that children with disabilities were considered as sick people. the phrase ‘not well’ is usually used when someone is ill and needs medical attention. interestingly, although children with disabilities were isolated and discriminated against in communities, the elders confirmed that the exclusion of people with disabilities was not ubuntu. disabled people as unfit for marriage as in most african cultures, the zulu people observe traditional rituals and life events that people at certain developmental stages are required to undergo. one of these life events is marriage. contrary to modern times where the family exerts less influence over whom their child should marry, in the past family members played a role in identifying a future spouse for their child. the process of spouse identification began while the girl was still young. she would be seen carrying out house chores, going to school, going to fetch water from the well and gathering firewood from the forest; then it would be decided that her skills would make her a valuable addition to the in-laws’ household. people with disabilities did not benefit from this process of identification and matchmaking because they were hidden away from the community. even those who were not concealed were not normally viewed as suitable partners because of ‘othering’. powell and menendian (2016:17) define othering as: a term that not only encompasses the many expressions of prejudice on the basis of group identities, but … it provides a clarifying frame that reveals a set of common processes and conditions that propagate group-based inequality and marginality. gogo e revealed that people with disabilities did not move around much within their communities. gogo e stated: ‘no, she or he would not go to church … because she or he would not be able to.’ (gogo e, female, 69 years) gogo d related: ‘no, who will take you to church? the pastor will come home and give you holy communion if it is time for holy communion. these people with disabilities who cannot do anything for themselves and cannot talk, in the past they used to be hidden in the house from the public’s sight. … some were not even bathing; they were neglected.’ (gogo d, female, 67 years) in terms of the preceding statements, it is evident that people with disabilities were excluded from social and religious activities because of their disabilities. this exclusionary practice is the reason why a group of zulu people from four communities within kwazulu-natal interviewed were not familiar with how people with disabilities lived; this lack of knowledge could also be the cause for further alienation. when gogo c was asked if she thought ubuntu values supported the marrying of people with disabilities, she responded by saying: ‘oh no, if she can’t see what is happening around her, because you can’t be blind and marry. you can’t be married and not be able to see and serve your husband.’ (gogo c, female, 67 years) mkhulu c revealed his belief that people with disabilities are not well; he stated: ‘hayi [no], i can’t get married to a disabled girl because my family won’t accept her because she is not well.’ ‘the neighbours knew that there was a child who was not well in that house but they kept quiet; they kept quiet and never said anything.’ (mkhulu c, male, 69 years) the researcher found it interesting that although she had clearly indicated that the enquiry was about how ubuntu values were applied, regardless of gogo d’s supposed ubuntu values, the latter referred to the bible to demonstrate why the community found it unacceptable for a person with a disability to marry. gogo d narrated: ‘my daughter, in genesis 2:18 the bible says god gave adam a helper because he saw him helpless so he was given a helper like you [implying that the helper was supposed to be a woman]. then god said, i will make you a helper like you. he didn’t do it any other way; he took the woman and made her the man’s helper, and he didn’t say that the man would be the woman’s helper. so how is a disabled woman going to help her husband?’ (gogo d, female, 67 years) on the other hand, mkhulu a expressed a totally different reason as to why people with disabilities were not regarded as appropriate marriage partners. he declared: ‘you see you have paid lobola [bride price] for a woman to be your third hand; secondly, you have parents that want to rest from doing things for you because your mother cannot keep waking up every morning and telling you to wake up. your parents can no longer make food for you, wash and iron your clothes. the bride should help my parents. yes, i can understand if disability came from an accident or injury and when you were already married to me.’ (mkhulu a, male, 98 years) people with disabilities were also regarded as not fit for marriage because they were considered as inactive and statues like furniture. as a result, such people were compared to furniture that just stays behind where the owner leaves it. mkhulu b said: ‘i can’t bring furniture or a statue home, how will she be able to perform the bride’s chores? when we pay lobola we expect a wife who will perform her wifely duties.’ (mkhulu b, male, 77 years) however, in another community, it transpired that the ways the people with disabilities were treated regarding marriage depended on the nature of the disability. gogo f responded: ‘yes, they will grow and get married, depending on the disability. most of them never got married; they stayed with their parents, except maybe if the disability were not severe, maybe just a knee or one eye affected. it depended on the disability.’ (gogo f, female, 90 years) inclusion of people with disabilities while some lamented the exclusion of people with disabilities, others argued that there is inclusion of such people in their communities. the inclusion of a child with a disability depended on the mother’s love, support and choice. as gogo c responded: ‘it depended on the love of the mother who gave birth to him or her … all this was a personal thing of the mother who gave birth to the child and the aunt who may have fallen in love with the child, who feels she must assist the mother in caregiving for the child; especially when she has to travel, the mother will ask her to assist in taking care of the child because she is travelling. because some of such children were not able to feed themselves, fetching water and so on, they depended on a caregiver.’ (gogo c, female, 95) this shows that the inclusion of people with disabilities was not a communal responsibility in the way gogo c puts it, but it was a family responsibility. furthermore, this responsibility was carried by women. in initiation to puberty, girls with disabilities would be included, but there would be some tasks that they could not do because of the nature of their disability. as a result, they would be assisted by other girls. gogo b pointed out: ‘if you started your menstrual cycle (ukuthomba) you were supposed to sleep in one common place (ukugonqa) as girls of the same age. if you needed to go and fetch firewood (ukuyotheza), the girl with a disability could not participate because of her disability but she was taught (ukuyalwa) that because of what is happening now, this meant that she could fall pregnant and give birth to a child if she has sex. however, when they went to fetch firewood, it was said that because she was not able to fetch firewood (ukutheza) then other girls would do it on her behalf.’ (gogo b, female, 79 years) dehumanising labels social constructions and perceptions of people with disabilities are crucial as they involve the hidden negative emotions. social perceptions are formed through the manner in which the society interacts with people with disabilities (yeo & moore 2003). grotevant (2000) asserts that social perception and social activities determine the way in which people construct their identity. in the case of how a group of zulu people from four communities within kwazulu-natal treated people with disabilities, research revealed negative results. morris (1993:103) postulates that the negative treatment of people with disabilities is a result of the uneasy feelings that disability provokes among non-disabled people. in a study conducted at one university in south africa, kasiram and subrayen (2013) highlighted how students with disabilities at the university were labelled as fools who were incapable beings. this demonstrates that these negative perceptions are not exclusive to non-educated villagers or elders from an archaic era but are socially embedded. unproductive and useless beings traditional communities relied on agricultural means of production prior to the advent of industrial and technological interventions. as far as some people with disabilities did not have the necessary physical strength that was essential for agricultural work, they were unable to contribute to food production (kreitmair 2000). in the case of germany, dr hinsen, an asylum director, advanced the same argument at a 1936 conference. he claimed that people with disabilities were ‘useless eaters’ who contributed nothing to the forms of production at that time. he further argued that the people with disabilities were a ‘burdensome existence’ (kreitmair 2000:32). this perception could be elevated in societies in crises such as war or poverty; latent prejudices about disability and people with disabilities are likely to become explicit. mkhulu c stated: ‘these people cannot do anything for themselves. they are unproductive and useless people. you have to do all the work, bathe them, wash for them, dress them, feed them, phew!’ (mkhulu c, male, 69 years) statues and furniture traditional communities have historically been obliged to do manual work in order to survive; the men had to go and hunt and the women were required to do agricultural work (marks 1967). although mkhulu b had indicated that his communities regarded people with disabilities as fellow humans that deserve to be respected and treated the same as other community members, when asked if he would allow his son to marry a woman with a disability he made the following statement: ‘i can’t bring furniture or a statue home, how will she be able to perform the bride’s chores? when we pay lobola we expect a wife who will perform her wifely duties.’ (mkhulu b, male, 77 years) banempene (implying oversexualisation) research results revealed that most families left their disabled family members alone at home. others admitted to asking their neighbours to assist by taking care of their family member with a disability. in doing this, they exposed their female children to all kinds of abuse including rape and incest. because people with disabilities were vulnerable and powerless when they reported the sexual abuse, the accused person would at times claim that she seduced him. depending on the level of influence and relationship between the accused and the family of the person with the disability, the victim would be treated as the bad one who ‘asked’ for it (theron & phasha 2015). nolte-schamm (2006) narrates an experience of one sexual abuse victim who, upon reporting that her close relatives were abusing her, was told that she was lying and was labelled a ‘bitch’. gogo b related how one disabled girl was murdered by a mob because: ‘she was considered to be having impene [a word used when one has high libido perceived to be leading to promiscuity]. that girl accused respectable men in the community of raping her, so people were very angry with her and she was found in the thick bushes stoned to death. nobody was arrested for her murder but some people were heard saying that she deserved to die because she seduced men.’ (gogo b, female, 79 years) these narrations reveal the vulnerability of people with disabilities in the hands of others who are supposed to care for and protect them. the derogatory terms being used when referring to them demonstrate the level at which communities perceive them negatively, regardless of asserting themselves as people with ubuntu values. discussion and recommendations the zulu elders from four communities within kwazulu-natal reported that children with disabilities were killed, though there was no concrete moral value underpinning the action. the parents who had chosen to let their children live, while isolating them from the community activities, further denied the community a chance to gain a first-hand experience of how a person with a disability lives. from the way the elderly spoke about disability, one can identify certain gender biases. it seems that female children were the ones who were mainly referred to when the exclusion of people with disabilities was discussed. in my view this constitutes violence against girls. research indicates that women with disabilities and girls with disabilities experience violence and exclusion more than their male counterparts do (united nations convention on the rights of people with disabilities 2015). in addition, cultural initiation into adolescence and adulthood among children with disabilities was explained in reference to the disabled girl child while nothing was said about the disabled boy child. seemingly, gender played a role in the exclusion or inclusion of a child with a disability. considering women with disabilities as unmarriageable enforces the gender stereotypes where unremunerated, and undervalued, productive and reproductive roles performed by women are a prerequisite for marriage. meanwhile, ngubane-mokiwa (2013) reveals that the negative perception and treatment of people with disabilities is not always because of cruelty but rather points to fear of the unknown. some people have not had close contact with people with disabilities so they do not understand them and how they live. according to kreitmair (2000:18) in his work in fear of the frail, adolf hitler of germany viewed people with disabilities as a health threat because of the ‘evils of incurable illness and disability’. hitler asserted that taking time to care for people with disabilities deprived the healthy ones of enough time to be productive for the benefit of the society and the country. the analysis of the findings highlights a disturbing confusion as regards ubuntu among the zulu communities researched. though it is not clear from the elders’ responses as to how they felt about the exclusion of people with disabilities during those years, it was evident that their current perspectives were informed by modern values and beliefs about what it means to be humane. they may have performed inhumane practices on those with disabilities because their context at that time allowed them to. consequently it is obvious that understanding and application of ubuntu changes with context. at the end of the study, one issue became clear: that there is a need to work with communities to renegotiate the meaning and application of ubuntu. there is also a need to restructure how societies respond to people with disabilities to achieve full inclusion. conclusion this study has explored the inclusion and exclusion of people with disabilities among a group of zulu people from four communities within kwazulu-natal. the findings indicated that people with disabilities were excluded from and by their communities. their exclusion was because of their parents’ powerlessness in the face of tradition. this research then offers empirical evidence as well as a theoretical explanation for the process of their exclusion. findings also indicate that the exclusion of people with disabilities was a misrepresentation and misinterpretation of ubuntu. exclusion from society is oppression and it dehumanises those excluded. there is a need for traditional communities to conduct ongoing conversations on how vulnerable people can be guaranteed their human rights. acknowledgements i acknowledge that this article presents the results of a research study funded by the kwazulu-natal (kzn) chapter of south africa’s national research foundation (nrf) titled the ‘archaeology of ubuntu’. the principal investigator was prof. moeketsi letseka. this is to acknowledge mkhulu mnikathi’s contribution to the ubuntu discourse; he passed on 8 months after the second contact with the kzn ubuntu team. kufa ulisela ngokusithathela isilulu esingumkhulu mnikathi wakwaphupha ewillowfountain [death, you are a thief for stealing mkhulu mnikathi with all the valuable knowledge he possessed]. competing interests i declare that i have no significant competing financial, professional, or personal interests that might have influenced the performance or presentation of the work described in this manuscript. references arendt, h., 1958, the human condition, university of chicago press, chicago, il. braun, v. & clarke, v., 2006, ‘using thematic analysis in psychology’, qualitative research in 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theory 44(suppl. 2), 6–20. https://doi.org/10.1111/j.1469-5812.2011.00792.x yeo, r. & moore, k., 2003, ‘including disabled people in poverty reduction in the world: “nothing about us without us”’, world development 31(3), 571–590. https://doi.org/10.1016/s0305-750x(02)00218-8 reviewer acknowledgement open accesshttp://www.ajod.org page 1 of 1 the editorial team of the african journal of disability recognises the value and importance of the peer reviewer in the overall publication process – not only in shaping the individual manuscript, but also in shaping the credibility and reputation of our journal. we are committed to the timely publication of all original, innovative contributions submitted for publication. as such, the identification and selection of reviewers who have expertise and interest in the topics appropriate to each manuscript are essential elements in ensuring a timely, productive peer review process. we would like to take this opportunity to thank all reviewers who participated in shaping this issue of the african journal of disability: amelia van der merwe anand mhatre anita van der merwe anlia pretorius brett bowman bronwyne coetzee camilla hansen chiwoza r. bandawe clare harvey cosmos yarfi desire chiwandire diane browder elsje scheffler estelle swart ester munalula-nkanu gabrielle g. kelly gerard goggin gert van rooy gloria marsay gubela mji heidi lourens jennifer jelsma johan borg jon duvall joy wee julia bingham karen l. rispin kate a. sherry kendra leith lana van niekerk lisa saville-young lynn clouder madeleine duncan madoda p. cekiso mahender mandala marcia lyner-cleophas margaret m. wazakili margie schneider maria marchetti-mercer maria l. toro martha geiger mary goldberg mary wickenden michael evangeli michael wehmeyer nina yssel oliver mutanga paul i. chappell pragashnie govender (nee’ naidoo) r. lee kirby rebecca a. matter richard vergunst ronald kirby roshan galvaan sara bass sara munera orozco sarah m. anjos sarah rule selete avoke shona mcdonald stephanie nixon stine h. braathen surona j. visagie teresa plummer tone oderud veloshnee govender verusia chetty vic mckinney wayne derman zelda coetzee in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on http://www.ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website and register as a reviewer. to access your details on the website, you will need to follow these steps: 1. log into the online journal at http://www. ajod.org 2. in your ‘user home’ [http://www.ajod.org/ index.php/ajod/user] select ‘edit my profile’ under the heading ‘my account’ and insert all relevant details, bio statement and reviewing interest. 3. it is good practice as a reviewer to update your personal details regularly to ensure contact with you throughout your professional term as reviewer to the african journal of disability. please do not hesitate to contact us if you require assistance in performing this task. publisher: publishing@aosis.co.za tel: +27 21 975 2602 fax: +27 21 975 4635 acknowledgement to reviewers http://www.ajod.org http://www.ajod.org http://www.ajod.org http://www.ajod.org http://www.ajod.org/index.php/ajod/user http://www.ajod.org/index.php/ajod/user mailto:publishing@aosis.co.za abstract introduction method results ethical considerations trustworthiness discussion practical implications conclusion acknowledgements references about the author(s) lina magnusson department of health sciences, faculty of medicine, lund university, sweden harold g. shangali department of prosthetics and orthotics, faculty of rehabilitation medicine, kilimanjaro christian medical university college, tumaini university makumira, united republic of tanzania gerd ahlström department of health sciences, faculty of medicine, lund university, sweden citation magnusson, l., shangali, h.g. & ahlström, g., 2016, ‘graduates’ perceptions of prosthetic and orthotic education and clinical practice in tanzania and malawi’, african journal of disability 5(1), a142. http://dx.doi.org/10.4102/ajod.v5i1.142 original research graduates’ perceptions of prosthetic and orthotic education and clinical practice in tanzania and malawi lina magnusson, harold g. shangali, gerd ahlström received: 24 june 2014; accepted: 14 oct. 2015; published: 10 june 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: maintaining and improving the quality of prosthetics and orthotics education at the tanzania training centre for orthopaedic technologists is essential for the provision of appropriate prosthetics and orthotics services in african countries. objectives: to describe how tanzanian and malawian graduates’ of the diploma in orthopaedic technology perceive their education and how it could be improved or supplemented to facilitate clinical practice of graduates. methods: nineteen graduates from the diploma course in orthopaedic technology were interviewed and phenomenographic analysis was applied to the data. results: seven descriptive categories emerged, namely varied awareness of the profession before starting education, well-equipped teaching facilities, aspects lacking in the learning context, need for changes in the curriculum, enabling people to walk is motivating, obstacles in working conditions and the need for continuous professional development. all participants perceived possible improvements to the content and learning environment. conclusions: prosthetic and orthotic education can be better provided by modifying the content of the diploma programme by dedicating more time to the clinical management of different patient groups and applied biomechanics as well as reducing the programme content focusing on technical aspects of prosthetic and orthotic practice. graduates were not prepared for the rural working conditions and the graduates desired continued training. introduction a tertiary education that provides good training conditions for high-quality rehabilitation service provision needs to be prioritised when it has been estimated that 0.5% of the population in developing countries require assistive devices such as orthotics and prosthetics (world health organization & international society of prosthetics and orthotics 2005). national studies conducted in malawi, mozambique, namibia, zambia and zimbabwe found that only 17% to 37% of individuals needing an assistive device received it. gender inequalities where women had less access to assistive devices were observed in malawi (women 14%, men 25%) (loeb & eide, 2004), and in zambia (women 12%, men 16%) (eide & loeb, 2006). orthotic and prosthetic devices and crutches facilitate or enhance user mobility (world health organization & united states agency for international development 2011). despite efforts made by international, national and local stakeholders, mobility needs are not being met (world health organization & united states agency for international development 2011). in order to provide prosthetic and orthotic services, educated staff is needed. two surveys by the united nations (south-north centre for dialogue and development 2006) and the world health organization (world health organization 2004) assessed the global situation in light of the standard rules on the equalisation of opportunities for persons with disabilities and level of implementation by states in 2004. about half of the african countries that responded had not supplied people with disabilities with assistive devices including prosthetics and orthotics (south-north centre for dialogue and development 2006). all countries reported that they could not provide services for everyone or provide maintenance and repair services and that services for people in rural areas were lacking. assistive devices were free to users in a few african countries through government provision or external donors, whilst in other countries users were asked to pay based on income (world health organization 2004). prosthetic and orthotic services need to be provided in low-income countries to address the convention of rights for persons with disabilities (crpd), which dictates access to rehabilitation services (article 26) and personal mobility (article 20) (united nations 2007). africa has five prosthetic and orthotic tertiary education programmes that are recognised by the international society of prosthetics and orthotics (ispo): the tanzania training centre for orthopaedic technologists (tatcot); the ecole nationale des auxiliaires médicaux, in togo; the sudanese diploma in prosthetics and orthotics; and the orthopaedic technique vocational and educational training programme in ethiopia and the university of rwanda (international society of prosthetics and orthotics 2015). there are also education programmes not yet recognised by the ispo in south africa, kenya, uganda and morocco, and the international committee of the red cross (icrc) provides module courses in ethiopia. trained personnel within the field of rehabilitation, including prosthetists and orthotists, are especially lacking in africa (raab 1992; shangali 2002). it is important that the education offered is of high-quality (world health organization & international society of prosthetics and orthotics, 2005) as the trained prosthetic and orthotic professionals often become managers and trainers involved in the in-service training of those who are providing the required services. it is necessary to determine if the education currently provided meets the needs of people with disabilities requiring prosthetic and orthotic services in africa. tatcot was founded 1981 with the objective of training prosthetist/orthotist students from a number of countries in english-speaking africa (shangali 2002). the school was developed in accordance with, and continues to follow, the international standards whereby the curriculum divides prosthetic and orthotic education into categories i, ii and iii (world health organization & international society of prosthetics and orthotics 2005). the impact report of the training at tatcot for prosthetic and orthotic personnel in relation to the ispo categories i and ii standards revealed that the effect on the establishment of services, delivery of appropriate prosthetics services, clinical leadership and professional communities was satisfactory in tanzania, kenya and uganda. however, emphasis should be laid on the implementation of a sound national referral system in order to improve client assessment, develop local solutions and promote quality standards (sexton, shangali & munissi 2012). it was reported that only a few people with disabilities had access to rehabilitation services in tanzania and malawi (south-north centre for dialogue and development 2006). the existing prosthetic and orthotic services in tanzania and malawi were free to some users through government provision or external donors, whilst other users needed to cover part or all of the costs themselves. the outcome of this study will present the tanzanian and malawian professionals’ perspective on how prosthetic and orthotic graduates can be better prepared for the regional conditions and needs. the aim of the study is to explore how tanzanian and malawian graduates’ of the diploma in orthopaedic technology perceive their education and how it could be improved or supplemented to facilitate clinical practice of graduates. contribution to the field the study contributes to description of critical areas that need to be considered in the forthcoming review and update of the international standards and guidelines for training personnel in africa, asia and south america for prosthetics and orthotics services (world health organization & international society of prosthetics and orthotics 2005). the results of this study can also contribute to the local curriculum review at tatcot. method design a qualitative phenomenographic approach with individual semi-structured interviews was used. phenomenography (marton 1981; reed 2006) focuses on participants’ perceptions and description of phenomena. it is a qualitative method developed within pedagogic research. the focus in phenomenography concerns how something appears to the participants and their subjective perceptions is collected through semi-structured interviews (linder & marshall 2003; marton 1981). data collection methods typically include interviews with a purposive sample of participants, with the researcher working towards an articulation of the interviewee’s varied perceptions that are as complete as possible (reed 2006). data are collected to capture a pre-reflective level of consciousness (marton 1981; reed 2006), and the result is a description on a collective level based on conceptions obtained from individual interviews. description is important because our knowledge of the world and of the qualitative similarities and differences varies between different people. a phenomenographic data analysis sorts perceptions which emerge from the data collected into specific conceptions which generate categories of description (marton 1986). phenomenography does not involve interpretation of underlying meaning such as many other qualitative methods and does have the aim to describe the variation in the data (marton 1986; reed 2006). sample and participants between 1996 and 2009, 131 students from 20 african countries graduated from the diploma in orthopaedic technology course of education at tatcot according to the curriculum designed in 1996. the 3-year education programme in prosthetics and orthotics was taught in english. the majority of graduates returned to their home country after graduation. to obtain variation in perceptions, a strategic sample of these graduates was drawn that accounted for variation in sex and employment situations. names and details of workplaces of graduates were provided by tatcot. the sample was drawn from a population comprising graduates from tanzania (n = 35) and malawi (n = 7). nineteen graduates of those (n = 42) who completed the diploma in orthopaedic technology course at tatcot were selected. the sample comprised a third of the, eligible graduates from tanzania (n = 12) and all graduates from malawi meeting the inclusion criteria (n = 7). none of the graduates asked to participate in the interviews declined participation. four women and 15 men, with an average age of 34 years (range of 27–47 years) were interviewed. the graduates had an average of 5 years’ experience (0.5–13 years) and were able to communicate well in english. the employment situations of graduates in tanzania and malawi were government-run workshops (n = 9), non-governmental organisations (n = 4), private practice (n = 1), teaching institutions (n = 3) and further education by studying for a bsc in prosthetics and orthotics (n = 2). in tanzania, both urban and rural employment situations were represented. in malawi, all the graduates worked in urban areas. interview and procedure data were collected in tanzania and malawi during 2009–2010. nine interviews were conducted by the first author lm and 10 interviews by two other swedish prosthetists/orthotists. the interviews were carried out face to face, started with background questions and demographic questions followed by two major open questions. how do you perceive your education at tatcot? how do you perceive your education in relation to your daily clinical practice? furthermore, predetermined probing follow-up questions were asked to complement the main questions and covered areas related to prosthetic orthotic education, entering the workforce, professional development, how they handled the situation as new graduates and what knowledge they lacked and how the tatcot education had influenced their performance. the predetermined follow-up questions were assessed as necessary to keep the interview sessions similar because the interviews were conducted by three different interviewers. the interview guide was used in a previous study conducted in pakistan (magnusson & ramstrand 2009). before beginning, a pilot interview was conducted and minor adjustments to the content of the questions were made. the researcher, l.m., trained the other interviewers to ensure that interviews were carried out consistently. briefing sessions were conducted after the three first interviews, where the interview situations were discussed and sound files were listened to together in order to strive for consistency in the use of the interview guide and probing and follow-up questions. recorded interview sessions lasted 20–60 minutes. the 19 interviews were transcribed verbatim and the sound files were listened to, to verify correct transcription and have a sense of the overall interviews. data analysis the phenomenographic analysis was applied in four phases (marton 1981; reed 2006). first, statements in the transcripts relating to the aim were identified. second, 442 statements of the participants’ perceptions were abstracted into conceptions. third, similarities and differences in conceptions were analysed and grouped into descriptive categories and are shown in table 1 (marton 1996). fourth, the analysis focused on the relationships between the conceptions within each descriptive category and how the descriptive categories related to each other. data analysis was conducted by authors lm and ga. table 1: example of data analysis process. results seven descriptive categories illuminate the variation in how education and clinical practice were conceptualised and understood by tatcot graduates (table 2). the descriptive categories and conceptions are presented below and each conception is exemplified with a quote. table 2: graduate perspectives of the prosthetic and orthotic education curricula and profession. varied awareness about profession before starting education low awareness of profession participants perceived they had very limited knowledge about the prosthetic and orthotic professions before starting their education. the provision of information about the course and profession before they started their education was perceived as a required improvement. participants stated that they enrolled in the prosthetic and orthotic education programme because they saw it as an opportunity for an education, rather than because they were choosing to become a prosthetist/orthotist. ‘i didn’t know what prosthetics and orthotics was before i started learning all about it in tatcot.’ (interviewee 5, malawi) desire to work with people with disabilities participants perceived that the profession was attractive because they wanted to improve the lives of people with physical disabilities. the desire to help was sometimes described as having originated from a relative in need of assistive devices or being influenced by a relative working in health care. participants described how they became aware of the profession and the education programme through a school visit and from medical professionals and people using assistive devices. ‘i did not know about prosthetics and orthotics, but i saw some people with [a missing limb] and i asked them and they said this limb is fabricated, and i asked, where did you get that? most of them answer that tatcot fabricate these things.’ (interviewee 18, tanzania) well-equipped teaching facilities good workshop facilities participants perceived the classrooms as good, and the workshop facilities were described as having the necessary machines and tools. the facilities were perceived as noisy, but ear protection was available. ‘the workshop is good and fully equipped. i don’t think they are missing any machines.’ (interviewee 18, tanzania) books were available at library, but insufficient participants perceived good availability of medical books through the medical library, but limited access to books about prosthetic and orthotic technology. these books were also considered very expensive to buy. the resource centre was perceived as often closed and the internet as slow. a need to introduce scientific journals was described. ‘for other subjects it was okay as it is a big institution with a big library but for prosthetics and orthotics it was a problem, but for medical book there was no problem and we could share books.’ (interviewee 6, malawi) satisfaction with hostel facilities participants enjoyed the hostel facilities and described the environment as nice and peaceful and the accommodation as excellent. participants emphasised the possibilities to cook, the access to the refrigerator and the television in the hostel. ‘i was very happy at the hostel. i would like to tell you within this environment, that tatcot hostel is better than other hostels.’ (interviewee 1, tanzania) aspects lacking in the learning context adequate teaching but can be improved participants had good perceptions of practical classes with teachers, in which they perceived they had ample opportunities to meet different patients and ask questions. however, the participants also perceived there was room for improvement in the teaching methodology. specifically, more problem-solving teaching methodology was desired. the participants would have liked more clinical training and more adequate examples presented in lectures. they described that some teachers lectured by reading aloud from a book, which they perceived as very poor teaching. possible improvements suggested included the inclusion of demonstrations in the subject, presentations and the assignments related to the clinical aspects of the field. ‘i think you have to lead the students to discover things themselves, while in tatcot you taught saying ‘this is like this you can’t use any other way’, so you have to do it the way they taught you. if you do it another way, your marks will get reduced, so the best way would have been to give the problem to the students and they should try and solve it and come up with something, and in that way they will never forget.’ (interviewee 9, malawi) desire for teachers with higher degrees the participants perceived a need to improve the competence of the teachers. the participants desired teachers with a degree higher than a diploma from tatcot in prosthetics and orthotics. participants described that many good teachers have left tatcot. newly graduated teachers were perceived as often not having their own teaching material and being unsure in the knowledge they taught. it was viewed that teachers should preferably be tanzanians and be further educated, having completed the bachelor programme in tanzania or internationally, outside africa. ‘i think it is lacking in qualified teachers, many teachers have gone away. let’s get those graduates that are getting from the diploma on a higher level so they can become teachers.’ (interviewee 13, tanzania) inequality in treatment of students participants perceived both equal and unequal treatment by teachers and staff during their education. the participants described the education programme as having mainly male students. women and tanzanian students were perceived as receiving better treatment than international male students. participants also described how teachers treat students in non-respectful ways, and such behaviour needed to change. ‘they would show that they like the local tanzanian students more than the others [students from other african countries].’ (interviewee 6, malawi) need for changes in the curriculum need for the addition of advanced prosthetic and orthotic technology the participants perceived a need to modify the curriculum by dedicating more time to the clinical management of different orthotic and prosthetic patient groups and other subjects such as applied biomechanics (table 3). table 3: need for changes in the curriculum and need for professional development. ‘they really need to add spinal orthotics in diploma, we really need to add upper limb prosthesis. we were learning it theoretical is just like do pressure here, do pressure here, and then when you come to the practical doing that pressure is not that easy.’ (interviewee 11, tanzania) drop technical drawing, metalwork and woodwork participants perceived that too much time is spent on outdated technology, especially in the first part of the course. technical drawing, metalwork and woodwork to shape feet were percived as subjects that can be removed from the curriculum. graduates percived that the amount of time spent on mathematics can be reduced in the curriculum (table 3). ‘we were shaping feet, but there is no need of shaping feet nowadays. no one ever making feet so with the new technology there is no need of having a lot of shaping feet, because the feet are from industries.’ (interviewee 17, tanzania) enabling people to walk is motivating helping people with disabilities is motivating participants described how they liked their profession and how they would like to continue the actual fabrication process of assistive devices. they emphasised that it is motivating to help people walk and to work with rehabilitation when people have disabilities but they are not sick. ‘what i really enjoy is finding that my patients is walking nicely and they are finding a new way in his new life, after being unable to achieve whatever he likes. patients says that ‘yes, i can walk. i can do this’, and it’s very good motivation for myself. i become happy, so that is what i really enjoy.’ (interviewee 17, tanzania) low-status profession participants perceived they had low salaries and few employment opportunities, which were discouraging aspects of their profession. the profession was described as not well known, having low-status and developing slowly in africa. participants described that their work environments were messy, the work was difficult, there were not enough bench workers available and there were no insurance for work injuries. ‘the problem is that our salary is very low and the people are not considering if you are doing a work which is very important. we have many big hospitals but they don’t have these orthopaedic workshops. in our country many people are missing limbs, people have congenital deformities, and lots of other deformities but our government are not considering that.’ (interviewee 18, tanzania) obstacles in working conditions varied support from senior staff and other professionals participants described a feeling of confidence when starting to practice what they learnt after graduation and reported good support from senior staff. however, participants also described situations where they were working alone after graduation without the support needed. medical staff in tanzania was perceived as having limited knowledge about the prosthetic and orthotic profession. lack of communication between doctors and prosthetists/orthotists was described as a problem, and increased teamwork was perceived as a possible way to improve services for patients. ‘whatever i did was considered right and never questioned after graduation; there was no-one who knew better.’ (interviewee 3, malawi) lack of materials a lack of materials and machines was described by participants as an obstacle to delivering services. ‘there is a lot of time when we don’t have material but a lot of patients, and sometimes we get materials and it takes a lot of time to store. it doesn’t go continually.’ (interviewee 13, tanzania) different demands when working in underserviced and less resourced settings in rural prosthetic and orthotic workshops, participants described how they have interesting work. they see patients who have been neglected for many years. they often had contractures and described it as difficult to know in what way it was best to start with these patients. creativity is needed to find good solutions. patients often do not return as many live far from the service, and assistive devices thus need to be completely finished before they are delivered. participants describe language barriers to communicating with members of different tribes, and how outreaches to tribes revealed groups of children with disabilities in the bush where there was no housing or access to rehabilitation services. patients who needed assistive devices could not afford them, or they could not manage or afford to travel very far for the required services. such situations were perceived as being difficult both in rural and urban settings. the working conditions were perceived as sometimes too difficult in underserviced and less resourced settings, resulting in participants leaving after a while. ‘this is something bad. some families, when they get a kid who is disabled, the maasai used to leave them in the house, just hide them, and then you find a kid who has been hiding and now he is no longer a kid. he might be 22 or 23, and he has been in the house for all of his years. he is psychologically defected, and you bring him out and he is just wondering, what is this now, and you see a lot of contractures.’ (interviewee 11, tanzania) need for continuous professional development desire for continued training participants described how after graduation they struggled to provide prosthetic and orthotic services to patients with specific diagnoses and therefore there was a desire for further training (table 2). participants perceived that patients were sometimes dissatisfied with their work of providing orthoses. participants also described a desire for further education in the form of a bachelor of science degree in prosthetics and orthotics. ‘spinal orthosis, i mean corset, and i also need to know about upper limb prosthesis, and also special seat orthosis. we need to learn more and recognise those three areas.’ (interviewee 17, tanzania) suggested ways of keeping updated international exchange programmes, the internet, preparing to teach others, discussions with colleagues and short-term international and national expertise support at centres were described as ways of keeping updated. the icrc special fund for the disabled short courses in ethiopia was perceived as a good way for further professional development. ‘i have attended the clinical method of trans-tibial prosthesis in addis ababa. that’s why i think i have growing interest in it.’ (interviewee 1, tanzania) ethical considerations ethical clearance was obtained from the kilimanjaro christian medical college ethics committee of tumani university makumira (numbers 307 and 274). the participants were informed about the study and written informed consent was obtained. data were handled confidentially and were stored safely as research data. trustworthiness to obtain variation of perceptions, participants included both women and men and participants working in two different countries, different sectors and in both rural and city areas. however, the sample only included two african nationalities, which is a limitation of the study. using three interviewers is a limitation, but the dependability (lincon & guba 1985) was strengthened using the same questions, briefing sessions of interviews and the pilot testing of questions. the interviews were conducted in english, which was neither the participants’ nor the interviewers’ first language. this affected the level of communication in a few of the interviews in tanzania. credibility was strengthened in the data analysis by the involvement of two of the authors (l.m. and g.a.) in the analysis and the reaching of agreement on descriptive categories and conceptions. author l.m. is a prosthetist/orthotist with previous research experience in africa; g.a. is an experienced researcher in qualitative approaches and analysis; and h.g.s. is the dean of tatcot with long experience within the field of prosthetics and orthotics in africa. h.g.s. has not been involved in the actual data analysis but contributes to strengthening the credibility of the content of the manuscript (creswell 2007). discussion this study contributes to the description of possible areas for improvement or revision of the current education programme at tatcot and the international guidelines for prosthetic and orthotic education. the main findings show that there is a need for revision of the curriculum of the diploma course at tatcot. the diploma course is a category ii course according to the guidelines for training personnel in developing countries in prosthetics and orthotics service (world health organization & international society of prosthetics and orthotics 2005). the major changes to the curriculum suggested were to reduce the time spent on learning to work with metal and wood and to focus more on advanced prosthetic and orthotic technology. this confirms similar results obtained in a previous survey of tatcot graduates in 2006 (jacobs 2007). the revised curricula implemented in 2011 at tatcot have reduced time spent on metalwork. woodwork related to producing components has been omitted (tanzanian training centre for orthopeadic technologists 2010). tatcot would like to provide modern training that adapts to developments in different countries (raab 1992). the technology used in low-income countries has changed and, at least in malawi and tanzania, is low-cost technology, that is polypropylene technology developed by the icrc is commonly used (sexton et al. 2012). this development is dependent on the provision of components by the icrc or similar provisions to africa. however, it is also to be considered that it is not in every setting that graduates will be able to obtain off-the-shelf components like the icrc components. skills of producing components for the prosthetic/orthotic devices are needed for people practicing in low-income countries. it should also be noted that students at a training institution need to be exposed to different technologies and not just one technology. sustainability needs to be carefully considered when it comes to recommending changes to the curriculum. in order to implement the crpd, the quality of prosthetic and orthotic services in low-income countries is important (united nations 2007). previous studies indicated that the majority of patients used their prosthetic or orthotic devices (90% in malawi and 86% in sierra leone) produced mainly with icrc polypropylene technology. however, patients’ self-reported mobility and satisfaction of assistive device revealed that the design and manufacture of prostheses and orthoses using low-cost technology needs be improved. a focus on improvements in-service delivery needs to be directed towards increasing the ability of patients to ambulate on uneven surfaces, hills and stairs, as well as increasing patients’ ability to walk long distances with reduced pain (magnusson et al. 2013, 2014). this suggests that the icrc polypropylene technology needs to improve or be replaced by better solutions. a survey answered by the staff providing prosthetic and orthotic services from a number of low-income countries indicated that the development of improved designs for durable and low-cost components, in particular prosthetic knees and feet, needed to be addressed. poor alignment of prosthetic and orthotic devices was also widely reported (wyss et al. 2015). the results illustrate that the graduates struggled to provide assistive devices such as spinal orthotics and upper limb prosthetics, as they had only a basic theoretical education of such devices. similar results were obtained in a previous survey at tatcot (jacobs 2007) and a later impact assessment also indicates a need to cover upper limb prosthetics within the education (sexton et al. 2012). the results (table 2) indicate that biomechanics in depth needs to be added in the curricula; this was also confirmed in the impact assessment report (sexton et al. 2012). in 1992, a survey found that too few professionals were being educated and that most of the workforce providing services had not gone through an education programme (shangali 2002). it is thus important that prosthetists/orthotists completing an education programme can assist not just with the most common and basic groups of patients in need of assistive devices but also patients with less common difficulties as not everyone will have the opportunity to receive further training. the graduates perceived that they were not prepared for underserviced and less resourced settings, working conditions or providing services to patients who had been without services for years. if the crpd (united nations 2007) is to be implemented, prosthetic and orthotic services need to be available beyond a few rehabilitation centres in the biggest cities in africa. to implement the crpd, prosthetic and orthotic services need to be scaled up in low-income countries and provided to all persons with disabilities who could potentially benefit from prosthetic and orthotic devices (magnusson 2014). in order to scale up services, increased numbers of african prosthetists/orthotists are needed. this is an urgent issue, not least in light of the fact that many today have not yet received any services at all. however, it is a positive development that a number of new prosthetic and orthotic education programmes have started in recent years in africa. to provide a good learning context, it was emphasised that equal treatment by teachers and staff regardless of the ethnic background or gender of the student was important. unequal treatment related to ethnic background was reported, but women were treated well by teachers at tatcot, in contrast with results obtained in a previous study for the pakistan institute for prosthetic and orthotics service (pipos) (magnusson & ramstrand 2009). the findings both of the present study and of previous studies concerning sierra leone (magnusson & ahlström 2012) and pakistan (magnusson & ramstrand 2009) demonstrate that managing specific pathological conditions and problems with materials are common difficulties perceived by graduates from both tatcot and pipos. in the revised curricula implemented 2011, assessments of patients have been introduced earlier in the education at tatcot (tanzanian training centre for orthopeadic technologists 2010). a need for further education and a desire for continuous professional education are also common themes. tatcot and pipos graduates desired and perceived a need for improvements in the education programmes. they perceived that more time needed to be dedicated to applied biomechanics and the clinical management of various specific orthotic and prosthetic patient groups, such as cerebral palsy patients, diabetic patients, arm amputees and patients in need of spinal orthotics. they also perceived a need to include education related to advanced prosthetic and orthotic technology. our findings confirm previous results for graduates of tatcot and pipos (magnusson & ramstrand 2009) that suggested revisions of curricula including reduced technical drawing, metalwork and mathematics. the study in pakistan found that the curriculum needed to add psychology, which in this study emerged only in few interview statements probably because applied psychology and reflective clinical practice have been taught at tatcot. a teaching module delivered at tatcot aims at providing the students with the ability to move from a practising orthotist/prosthetist to one of a reflective practitioner (grobler, van schalkwyk & wagner 2006). additionally, the graduates from both tatcot and pipos desired teachers with a higher degree and they experienced good support from senior staff when entering the workforce. practical implications as tatcot is following current international guidelines, this study contributes to the review and update that was planned by ispo/who of the international guidelines for training personnel in africa, asia and south america for prosthetics and orthotics services. the current international guidelines for category ii, prosthetist/orthotist is used by all the ispo-certified prosthetic and orthotic education programmes in these three continents (world health organization & international society of prosthetics and orthotics 2005). locally, this study suggests that there is a need to improve information about the profession to students before they start the education. it also suggests that teaching methodology and inequality in the treatment of students need to be addressed. the study further suggests that there is a need for a number of changes in the curriculum such as increasing the attention devoted to clinical management of different groups of patients and applied biomechanics, with less focus on technical drawing, metalwork and woodwork. also extra support or more resources need to be provided for graduates working in under-resourced/rural settings. the results also indicate that there is a need to give prosthetists/orthotists the opportunity to attend formal and short-term tailored courses on specific specialities, i.e. upper limb orthotics/prosthetics, spinal orthotics, biomechanics and different designs of lower limb prosthetics/orthotics. this could be through a structured course within a country/region where a large number of participants can attend. it is also suggested that there should be in-service training courses within their individual facilities. conclusion there was low awareness of the profession in general and amongst students entering the education programme. enabling people to walk was a motivating factor of the profession whilst the low salary was a discouraging factor. the learning environment was perceived as good with good teachers and well-equipped teaching facilities. to improve the learning environment, issues of equality for students from different countries should be addressed. improvements in the pedagogical approach and higher competence level of teachers are needed to improve the education provided at tatcot and to provide a better service to patients. when entering the workforce, graduates perceived that they lacked knowledge in dealing with specific clinical problems, were not prepared for working in rural conditions and they desired continued training. therefore, more time in education should be dedicated to the clinical management of different groups of patients and applied biomechanics and focus on technical production aspects of prosthetic and orthotic practice should be less. acknowledgements the authors thank josefin fridlund and susanna sjögren (prosthetists/orthotists, sweden), who collected part of the data in tanzania; tone oygard from the 500-miles prosthetic and orthotic centre at kamuzu central hospital in lilongwe and robster manasi nyirenda from the orthopaedic centre, queen elizabeth hospital, blantyre, malawi, for providing support during data collection and for reading the manuscript in its final stages. the authors also thank the colleagues in tanzania and malawi who agreed to participate in this study. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions l.m. was the project leader responsible for the study design, data collection, data analysis, and drafting the paper. h.g.s. organised ethical clearance and data collection and provided comments to the paper in the final stages. g.a. contributed to the study design and data analysis and provided comments on the paper. references creswell, j., 2007, qualitative inquiry and research design – choosing among 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shangali, h., 2002, ‘development of training and education in rehabilitation technology in tanzania’, prosthetics and orthotics international 26(3), 178–181. http://dx.doi.org/10.1080/03093640208726645 south-north centre for dialogue and development, 2006, global survey on government action on the implementation of the standard rules on the equalization of opportunities for persons with disabilities, office of the united nations special rapporteur on disabilities, amman. tanzanian training centre for orthopeadic technologists, 2010, diploma curriculum in orthopaedic technology, tatcot, moshi. united nations, 2007, the convention on the rights of persons with disabilities, united nations, new york, viewed 13 april 2015, from http://www.un.org/disabilities/default.asp?navid=14&pid=150 world health organization, 2004, disability and rehabilitation status review of disability issues and rehabilitation services in 29 african countries, disability and rehabilitation team, who, geneva. world health organization & international society of prosthetics and orthotics, 2005, guidelines for training personnel in developing countries for prosthetics and orthotics services, who and ispo, geneva. world health organization & united states agency for international development, 2011, joint position paper on the provision of mobility devices in less resourced settings: a step towards implementation of the convention on the rights of persons with disabilities (crpd) related to personal mobility, who, geneva. wyss, d., lindsay, s., cleghorn, w.l. & andrysek, j., 2015, ‘priorities in lower limb prosthetic service delivery based on an international survey of prosthetists in lowand high-income countries’, prosthetics and orthotics international 39(2), 102–111. http://dx.doi.org/10.1177/0309364613513824 abstract introduction methods results discussion conclusion acknowledgements references about the author(s) karen rispin department of biology and kinesiology, letourneau university, longview, united states abigail b. davis department of biology and kinesiology, letourneau university, longview, united states vicki l. sheafer department of psychology, letourneau university, longview, united states joy wee canadian association of physical medicine and rehabilitation, kingston, canada citation rispin, k., davis, a.b., sheafer, v.l. & wee, j., 2019, ‘development of the wheelchair interface questionnaire and initial face and content validity’, african journal of disability 8(0), a520. https://doi.org/10.4102/ajod.v8i0.520 original research development of the wheelchair interface questionnaire and initial face and content validity karen rispin, abigail b. davis, vicki l. sheafer, joy wee received: 28 mar. 2018; accepted: 27 sept. 2018; published: 28 mar. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: because resources are limited in lowand middle-income countries (lmic), the development of outcome measures is of interest. wheelchair outcome measures are useful to support evidence-based practice in wheelchair provision. objectives: the wheelchair interface questionnaire (wiq) is being developed to provide a professional perspective on the quality of the interface between a wheelchair and its user. this article discusses the development of the wiq and its face and content validity. method: during field studies in kenya, we sought to include professional report data on the wheelchair–user interface that could be analysed to inform design changes. none of the existing measures was focused on the interface between users and their wheelchairs. the wiq was developed to meet this need. to investigate face and content validity, 24 experienced wheelchair professionals participated in a study that included two rounds of an online survey and a focus group in kenya. results: responses were categorised by topic and the wiq was modified following each iteration. participants affirmed the usefulness of a brief professional report measure to provide a snapshot of the user–wheelchair interface. participants emphasised the importance of brevity, wide applicability and provision of specific feedback for wheelchair modification or design changes. the focus group agreed that the final version provided useful data and was applicable to virtually all wheelchair users in lmic. conclusion: these preliminary studies indicate initial face and content validity of the wiq as a method for providing a professional perspective on the interface between a user and his or her wheelchair. keywords: outcome measure; wheelchair assessment; user–wheelchair interface; wheelchair appropriateness; professional report. introduction it is estimated that about 1% of the global population requires a wheelchair. a large percentage of the people who do not have access to wheelchairs live in lowand middle-income countries (lmic) (world health organization 2011). in addition, many wheelchairs lack adequate durability, do not provide satisfactory facilitation of mobility or are inappropriate for users’ needs and situations (pearlman 2006; visagie et al. 2016). yet access to effective and appropriate wheelchairs has many important health, economic and social benefits for individuals, as well as societal benefits such as productivity and effective use of health resources (bray et al. 2014; visagie et al. 2016; world health organization 2011). because of the growing need for wheelchairs and the issue of wheelchair effectiveness, it is critical to provide evidence-based data to assess wheelchair appropriateness (cooper, cooper & boninger 2008; hoenig, giacobbi & levy 2007; horn & gassaway 2007). outcome measures provide information useful to wheelchair users, therapists, service providers, designers and manufacturers (cooper et al. 2008). evidence-based practice is also necessary for the effective use of funds, something that is especially crucial in lmic (cooper et al. 2008; mortenson, miller & auger 2008). evidence-based practice can involve the appropriate application of individual knowledge of professional experts (karthikeyan & paris 2010). thus, clinical judgement about the interaction between a wheelchair and its user can inform evidence-based practice. in this article, the term ‘interface’ refers to all user–wheelchair interaction. the need for evidence based on clinical judgements in no way minimises the widely recognised importance of patient report outcomes (burke et al. 2008). however, while patient report measures are based on the experience of wheelchair users, professional report measures are informed by clinical judgement developed from training and experience. unlike most wheelchair users, wheelchair providers are familiar with a wide range of wheelchair options (batavia 2010). wheelchair service providers with depth of wheelchair experience have the broadest base of experience for the assessment of the user–wheelchair interface. this experience informs individual clinical assessment (world health organization 2008) and can also inform the development of a brief measure intended for preliminary data or for tracking broad patterns in larger populations. although based on clinical judgement, the best measure would also reflect an individual user’s experience. several characteristics of questionnaires must be considered in the development of a measure proposed to meet these needs. for some questionnaires it is not clear if they are meant to be completed by wheelchair providers or wheelchair users (kumar et al. 2013; schmeler et al. 2017). it is important that a questionnaire give information about who should complete it, as well as describe the target audience and purpose of the data collected (horn & gassaway 2007; williams 2003). in addition to lack of specificity to participant population, a lack of specific focus on target information resulting in low discriminatory validity is also a challenge of many questionnaires (hoenig et al. 2007; may 1997). some measures are applied to many types of assistive technology (demers, weiss-lambrou & ska 2002) and as such offer little data on the impact of specific parts of the users’ wheelchair (may 1997). many wheelchair outcomes are aimed at assessing the users’ ability or quality of life rather than the users’ interface with their wheelchair. as might be expected, these are very sensitive to differences in wheelchair users’ capacity, resulting in any information on the interface being overwhelmed by wide differences in users’ capacity (kirby et al. 2004; mills 2003; mortenson, miller & miller-pogar 2007; rushton et al. 2011; stanley et al. 2003). other tools assess multiple factors together, such as maintenance condition and appropriateness, or combine multiple components into one score (karmarkar, collins & cooper 2009) and consequently have low resolution for data that could result in responsive changes in the design of a specific wheelchair component (rispin et al. 2017b). to be useful for wheelchair modification and design changes, a tool must also have high discriminatory validity (jerosch-herold 2005; may 1997). this means that data should not be grouped in domains in such a way that individual factors become obscured (williams 2003). numerical data suitable for parametric statistical analysis, such as data produced by visual analogue score responses, has been shown to increase discriminatory validity (rispin et al. 2013; rispin, tutt & sosa-saenze 2016; walpole et al. 2006; wewers & lowe 1990). in addition, a mixed-methods tool that yields both quantitative and qualitative data also increases discriminatory ability, because it provides qualitative explanations, which can be categorised to explain numerical results (fielding 2012). for example, instead of merely reporting low scores for transferring into and out of a specific wheelchair type, a mixed-methods tool would also report comments, which might refer to armrests, chair height, brakes and so on. the repetition of a specific part that hinders transfers in the comments would allow researchers to discriminate between parts of the wheelchair that are functioning well and those that are not. for utility in clinical practice and field studies, an outcome measure must be as brief as possible. the length of research questionnaires has an impact on administrative burden, and thus usefulness, for busy professionals (burns et al. 2008). there exists a tension between brevity and collection of comprehensive data. however, a questionnaire that is too long for general use will yield little useful data in practice. in addition, tracking clients over time is challenging in lmic (rispin et al. 2017a), so cross-sectional data collection is more likely to be used than data collected over time. while an instrument appropriate for cross-sectional data collection may also be used over time, it is important that it be able to be used at a single time as well. a professional report tool that is based only on professional opinion could be employed even when wheelchair users and caregivers only speak a local language not held in common with wheelchair professionals, as may occur in lmic. english is becoming a key global language of higher education and internet communication with the result that an outcomes tool written in globally accessible english has the broadest scope of use internationally (park & wee 2017). thus, while there is a need for such a questionnaire to have precise wording, there is also a need for simple wording that is easy to understand and translate. finally, a tool intended for use in lmic would logically focus on wheelchair types present there, and almost all wheelchairs encountered in most lmic are manual wheelchairs (pearlman et al. 2009). the wheelchair interface questionnaire (wiq) is being developed to meet the need for a tool to yield highly discriminatory data based on a professional report snapshot of the interface between a user and his or her wheelchair. our hypothesis was that repeated survey rounds with wheelchair professionals with international experience would support the face and content validity of the wiq. methods questionnaire development the wheels project is an interdisciplinary undergraduate research programme started at letourneau university in 2010. the wheels project partners with a school for children with disabilities in thika, kenya, to conduct field studies. the goal of these field studies is to provide manufacturers with data that can spark responsive design changes: changes to wheelchair design based on their function in a real-world environment. in addition to data on durability, user satisfaction and ease of rolling for different wheelchair types, we sought an outcome measure that would provide professional report data specifically on the quality of the interface between a user and his or her wheelchair. over several years, we collaborated with other wheelchair researchers and conducted informal searches of the available literature seeking to find an outcome measure that would work for this purpose in our studies in kenya. we attempted to use the wheelchair assessment checklist. however, much of the data concerned wheelchair maintenance condition, and the questions to do with the user–wheelchair interface were categorised and analysed in a way that merged the two data types and merged components (karmarkar et al. 2009). we then tried to use a simple modification of the wheelchair components questionnaire (wee & rispin 2015). however, we found that while this gave distinct information on components, it did not include some key aspects of the interface between a user and a wheelchair. development of the wiq began with a rough draft composed by the research team, informed by experience gained through these earlier studies. the focus of the wiq was to be solely the interface between users and their wheelchairs. it was not to directly address any other aspect of quality of life. questions were designed to be specific enough to isolate problems and inform responsive change. to address the need for high discriminatory validity, questions utilised a visual analogue scale format to provide numerical data suitable for parametric statistical analysis, with accompanying comments providing explanatory qualitative data. like the wheelchair components questionnaire, the wiq retained questions regarding regions of the wheelchair corresponding to regions of a user’s body. additional questions were added to the initial draft to assess other aspects of the interface. because of heterogeneity in the capacity of wheelchair users, these questions had to be worded very carefully to keep a level playing field for all wheelchair users. for example, using the wiq, mobility should be rated comparatively to the maximum mobility possible for a particular user. this way, an appropriate interface would not receive a low score because its user has very limited mobility. there was a commitment that the questionnaire would be brief and that the language would be clear to those speaking english as a second language. to avoid difficulties in tracking wheelchair users over time, this tool was to be a snapshot of the quality of the interface between a wheelchair user and his or her wheelchair. to avoid loss of data when a wheelchair user was non-verbal or spoke a different language than the researcher, the wiq was designed to be completed without verbal interaction with the wheelchair user. in other words, the wiq did not include a formal interview process and could be completed using solely the rater’s informed clinical opinion based on visual and tactile observation. however, if verbal interaction with the wheelchair user or caregiver was possible, the assessor may choose to broaden their observations to include information obtained from the wheelchair user or caregiver. the assessor’s clinical judgement may sometimes be influenced by these interactions. similarly, the wiq does not require the user to perform movements, so raters can assess an interface without communicating actions to the wheelchair user. however, the accuracy of a rating would be improved if the wheelchair user did perform some movements for the rater, so communication is encouraged when possible. the target audience for data resulting from the use of the wiq was initially wheelchair manufacturers addressing design issues. for example, if wheelchair providers repeatedly give low scores for many users regarding the ease of transfer into and out of a certain type of wheelchair, designers might consider modifications to address that low rating. however, as development continued, the target audience broadened to include service providers in clinical settings. methodology for validity study any tool used in clinical research must be valid (karmarkar et al. 2009). validity is the degree to which a test measures what it is intended to measure (williams 2003). face validity, which is considered the initial form of validity, considers whether the tool appears valid to the population qualified to utilise the tool. content validity takes into account both comprehensiveness and representativeness of the content of a tool (yaghmale 2009 2003). content validity is assessed by professional judgement and is improved by the inclusion of at least five experts (yaghmale 2009). informed opinion that approaches consensus from multiple experts during the development of a tool indicates the face and content validity of that tool (burns et al. 2008; williams 2003; yaghmale 2009). one method for reaching consensus among experts is called the delphi method, which involves the conduction of several rounds of a survey, utilising feedback to adjust after each round (brady 2015). if participants involved have a similar background, only 10–15 participants are needed, and fewer than three rounds may be acceptable for a study (hsu & sandford 2007). a delphi-style survey of wheelchair experts was planned to investigate the face and content validity of the wiq. at least two delphi rounds would be included, with the option to continue the survey format or conduct a less traditional focus group. participant characteristics because wheelchair service providers would be completing the questionnaire, a cadre of service providers was sought as study participants to assist with the development, face validity study and content validity study of the wiq. a range of service providers was desired, with a majority of occupational therapists and physical therapists. clinicians known to the researchers and met through professional contacts were invited to participate in the study. although the wiq was developed for use in kenya, it was also intended to be used in other lmic around the world, so service providers with international wheelchair experience were approached. international experience, defined for this study as experience outside of europe and north america, was self-reported by participants. for the online surveys, exclusion criteria included less than 5 years of experience, no global wheelchair experience or no measurable certifications or qualifications. ethical considerations the study design was approved by the institutional review board at letourneau university in an approval letter (protocol number 1703001174, reference: biology department of letourneau university). the first stage of the study included a two-round online survey, loosely based on a delphi study. a snowball sampling method was used, with those who had initially joined the study recommending others. the survey rounds were followed by an in-person focus group in kenya for validation expressly in the kenyan context. study design participants in all three rounds were given a copy of the latest draft of the wiq along with background information about the purpose and focus of the wiq. they then completed a survey, which enabled them to respond to the purpose of the questionnaire, rate the current draft, provide feedback and make recommendations about what would be important to include in such a tool. a total of 17 of the wheelchair professionals invited participated in the two surveys. surveys were conducted using limesurvey version 2.5, an open source application that allowed researchers to develop an original survey, send it to participants and collect responses for analysis. the online format was beneficial because it was accessible to participants anywhere around the world. in addition, responses could be anonymous, allowing for a wide range of opinions to be voiced. changes were made to the wiq in response to the first survey round, and an updated draft of the wiq and limesurvey response survey was sent to the participants involved in round 1 as well as newly invited participants joining the study for the first time. questions on the limesurvey asked participants to rate and comment on the value of and need for the wiq; the title, format and usefulness; and to rate and respond to individual questions on the questionnaire. each aspect of the questionnaire and each question was rated on a seven-point likert scale, with a space for comments. after each round, the ratings were analysed, and the comments were categorised by topic. questions that received two or more ratings below four on the seven-point scale were changed or deleted. repeated and important comments were considered in editing each draft of the questionnaire. after the two online survey rounds, a focus group was conducted in kenya. kenya was chosen as a representative low-income country because the researchers were conducting ongoing studies in kenya and knew there would be a group of wheelchair professionals with broad experience in lmic present. nine of these professionals were chosen by convenience sampling to participate in the study. each participant used the most recent draft of the wiq to rate the interface between a wheelchair user and his or her chair. two of the participants used that draft of the wiq to evaluate more than 20 wheelchair users and their wheelchairs. fifty wiqs were completed in total. this hands-on experience gave participants insight and understanding of the wiq. participants then rated the wiq on a paper version of the online survey that had been used in the previous two rounds of the study. subsequently, there was open discussion, which was recorded by a research assistant. written comments from the paper version of the survey along with comments from the open discussion were categorised and responded to, both in person during the focus group study and during editing of the wiq. results because our participants were recruited using snowball sampling, more participants were added throughout the study. eight participants with global wheelchair experience completed the first round of the survey, with nine additional participants in the second round. table 1 shows qualifications and years of wheelchair experience for each of the participants. participants included occupational therapists, physical therapists, seating specialists and medical doctors with experience in rehabilitation and wheelchair provision. participants in the kenya focus group included occupational therapists, physical therapists, orthopaedic technologists, wheelchair technicians and one educator with extensive experience working with students in wheelchairs. two of the focus group participants had been a part of the online survey. table 1: study participants for each stage of research (n = 24).† table 2 shows mean likert scores for aspects of the wiq and topics of the questions included in the final version of the questionnaire. the table is divided by rounds of the online surveys and the focus group in kenya. as the table shows, the average scores for all final questions were above four on a seven-point scale. table 2: mean likert scores from delphi round 1, round 2 and focus group. table 3 shows the participants’ comments from the online survey, categorised by topic. both likert scale scores and comments indicated consensus on the need for a questionnaire focused on the user–wheelchair interface and completed by service providers. participants used comments to indicate what they felt would be important to include in such a tool. there was consensus that the focus on manual wheelchairs was appropriate for use in lmic. participants supported the idea that the wiq would be useful in field studies to provide data to manufacturers that would enable design change. they felt it could also be useful in clinical practice as an initial overview before a more detailed clinical assessment. comments about the demographic information collected at the top of the questionnaire resulted in the inclusion of a five-point scale for upper body strength and for trunk and head control. comments strongly emphasised the importance of clear and simple vocabulary easily understood by second language english speakers. it was thought that in the future this would also facilitate translation of the wiq. several study participants emphasised the importance of brevity. there was an emphasis on the importance of a tight focus on the wheelchair interface. the importance of grouping body areas according to the impact of different wheelchair regions was discussed to allow for meaningful responsive change in design and fitting. several participants offered alternative wording of questions on the wiq. table 3: the frequency of comments by topic. in responding to participant comments, questions were simplified, clarified and shortened. the question regarding pain was divided by body region. several participants suggested that a question regarding toilet activities should be deleted because for many wheelchair users it would not be directly impacted by the user–wheelchair interface, or the factors that were impacted were already addressed in a question about mobility in small spaces. because this question had low mean ratings, it was deleted. participants also suggested adding a question regarding postural support and another regarding the facilitation of desk and table activities. the focus group in kenya again emphasised the importance of brevity. consensus was reached that the subtitle should include the term ‘service provider’. it was suggested that service providers mark questions ‘n/a’ for questions that do not apply to the interface they are rating to discriminate between questions that truly do not apply and questions forgotten by a rater. this would minimise the possibility of missing data. wording for the question regarding the wheelchair’s facilitation of social interaction was discussed and modified. there was consensus that a question regarding a wheelchair’s facilitation or hindering of transfers should be included. this grew out of the assessment of one type of wheelchair. those with extensive experience with that wheelchair type knew that it consistently hindered transfers and wanted an avenue to provide feedback to manufacturers. the group agreed this was an important part of a user’s interface with his or her wheelchair and came to consensus on wording for this additional question. there was consensus on the value of a questionnaire that can be administered with or without interaction with the wheelchair user. this would enable the wiq to be useful when a wheelchair user is a child, non-verbal adult or a speaker of a different language. however, there was also consensus on encouraging wheelchair providers to include auditory information from the users and caregivers whenever possible to broaden their frame of reference while rating a wheelchair. after modification and refinement following each round of the study, the wiq now has nine questions. the first question regarding pain has sub-questions regarding four body regions that are to be analysed as individual questions. box 1 shows the wording of the questions on the wiq. each question is answered using a visual analogue scale format with an accompanying comment, to yield both qualitative and quantitative data. figure 1 is an example of a question on the wiq. figure 1: an example of a question on the wheelchair interface questionnaire. box 1: the wording of the questions included in the most recent version of the questionnaire. discussion discussion of results input from 24 participants with over 300 combined years of wheelchair experience confirmed and informed the face and content validity of the wiq and each of its questions. focus group members’ hands-on experience using the questionnaire informed their feedback about the questionnaire’s content. our results support the hypothesis that the wiq has initial face and content validity. with additional reliability and validity testing, it can become a useful tool for assessing the user–wheelchair interface in lmic. agreement among study participants confirmed our hypothesis that a tool to yield professional opinion on the quality of the interface between a wheelchair and user would indeed be useful. there was also agreement that the lack of a standardised level of verbal interaction with a wheelchair user or caregiver would greatly increase the wiq’s utility and applicability in large studies. the ability to complete the questionnaire without interviewing users allows service providers to assess the wheelchair interface of users who cannot be interviewed. in lmic, wheelchair providers may not always be able to communicate easily with wheelchair users or their caregivers because of language barriers. in other cases, wheelchair users who are non-verbal or very young may be in an institutional or boarding school situation without a long-term established personal caregiver. feedback from the focus group confirmed these considerations. however, participants felt that any feedback possible should be considered as part of the observational data informing the wheelchair provider’s professional opinion as expressed through the wiq. the fact that the wiq is intended to be a brief snapshot of the interface between a user and his or her wheelchair at a given moment in time also broadens the venues in which it may be used. at the same time, because the wiq is a brief questionnaire based solely on a professional opinion of the interface at a given moment in time, it is necessarily much less complete than a clinical relationship with repeated clinical assessments and records kept over a client’s lifespan. while there was feedback that the wiq might be of clinical use, it would not in any way replace the need for a full assessment or clinical records. instead, the wiq could function as an initial indication of what assessment might be needed. some participants suggested that if thresholds for overall score were established, it could be used as an evidence-based indication of the need for a new chair or a modified chair. repeated confirmation that a brief questionnaire using simple language was more likely to be utilised by busy providers reminded researchers to keep questions brief and simple. this facilitates quick comprehension and completion for those who may speak english as a second language, as well as easier translation. because the wiq is intended as a professional report tool, and most wheelchair providers have had some variety of post-secondary education, it is likely that the wiq may need only to be translated into the languages used for higher education. unlike measures focused on the quality of life, mobility level, skills or confidence levels of wheelchair users, the wiq is designed to avoid rating the wheelchair users’ capability level. this was a challenge because it required that questions be written to enable a level playing field for all users. because the wiq is intended only for manual wheelchairs, this means that each interface is compared to the assessor’s understanding of the best possible manual wheelchair interface for that user. yet there will be users who would have benefitted from a power wheelchair. currently, this is not reflected in the results from the wiq. in the future, as the global situation changes, a version of the wiq could be developed to include the option of power wheelchairs. participants confirmed the value of the inclusion of questions about specific wheelchair regions. the wheelchair was divided by region, supporting different body parts, rather than by part to avoid loss of data when wheelchairs do not all have the same part: for example, questions ask about postural support instead of about backrests and armrests because a wheelchair may not have an armrest. this division also keeps the questionnaire focused on the wheelchair user. it is interesting that participants wanted to group the questions regarding pain or discomfort into one question but keep aspects of the wheelchair interface divided by body part. this was to enable quicker clinical response to ameliorate problems leading to pain or damage. the wiq may also enable specific feedback to wheelchair manufacturers if there are repeated characteristic problems with a certain wheelchair type. limitations and future work a greater number of participants would have provided more feedback. although some study participants had international experience in south america, africa and asia, most were from north america and kenya. the inclusion of wheelchair providers familiar with global wheelchair work delivers a broad framework of experience. however, further studies that include asian and south american wheelchair providers would be beneficial. the final focus group in kenya gave an additional level of validation, but limited time in the earlier online survey resulted in only two rounds, diverging from a traditional three-round delphi-style survey. additional validity testing remains to be done. the time to complete the wiq was not formally tracked, and this needs to be done in a systematic way to confirm that the wiq is brief enough to be useful in many settings. inter-rater reliability testing is planned as this is the method most commonly utilised to assess the reliability aspect of validity. it is done by comparing the scores of a group of assessors rating the same subjects. construct validity compares results from one measure to another somewhat similar measure to see if they move together as expected. a study of construct validity is also planned. test–retest reliability and other tests remain to be done as well. the wiq itself is necessarily limited by a rater’s knowledge, experience, biases and training. raters’ knowledge is not only limited by their qualifications and experience but also by the level of communication they can have with the user. an important strength of the wiq is that it does not require a standardised level of communication. however, communication adds to a rater’s depth of understanding, so the variance of communication ability among raters will have at least some impact on their ratings. because of this intrinsic limitation, the results of the planned inter-rater reliability study are of interest. discriminatory validity is the ability of a measure to discern meaningful difference in a sensitive manner. study participants confirmed the importance of qualitative and quantitative data, as well as that of data that would provide information specific enough to enable responsive modification and design changes. in other questionnaires using a similar format, the visual analogue scale provides continuous quantitative data while the comments provide qualitative data that gives a reason behind the rating (rispin et al. 2013; rispin et al. 2017b). high discriminatory validity for the wiq cannot be confirmed until a large study with multiple sets of 10 or more individuals in different types of wheelchairs is completed. this is planned to confirm that the wiq is able to identify repeated patterns in specific chair types. for example, the wiq should be able to identify a design issue that hinders transfers for most users. conclusion this study supports the face and content validity of the wiq as a measure focused specifically on obtaining professional report data on the interface between a wheelchair user and his or her wheelchair at a specific moment in time. two rounds of a survey of expert opinion and one focus group supported face and content validity and informed the final draft of the questionnaire. the wiq is intended to be used by wheelchair providers with a background that enables informed clinical judgement. questions are designed to identify specific problems with the user–wheelchair interface. when further validation is completed, the wiq could be used in large field studies to provide data that facilitates responsive design changes by manufacturers. in a clinical setting, the wiq could indicate problem areas, which could be investigated further in a more detailed clinical assessment. acknowledgements the authors would like to thank letourneau university for study approval. they would also like to thank the participants who gave up their time to be a part of this study, both online and in the in-person focus group. competing interests the authors declare that they have no conflicts of interest resulting from any financial or personal relationships. authors’ contributions a.b.d. is a student studying at letourneau university in preparation for a career in occupational therapy. her contributions included implementation of study design method, data collection, preliminary analysis, initial drafting, editing and corresponding with authors. k.r. leads the wheels project at letourneau university. her contributions included study design, intellectual content, data analysis, revising and redrafting, and final approval of the article. v.l.s. is the chair of the psychology department at letourneau university. her contributions included research method approval, statistical analysis, intellectual content regarding questionnaire validity, editing and final approval of the article. j.w. is a member of the colleges of physicians and surgeons of b.c. and ontario; fellow of royal college of physicians and surgeons of canada. her contributions included intellectual content regarding clinical implications and revising later drafts of the article. funding the study in kenya was funded in part by letourneau university’s global studies programme and in part by donations from individuals to support the work of the wheels project. references batavia, m., 2010, the wheelchair evaluation: a clinician’s guide, jones & bartlett learning. sudbury, ma. brady, s.r., 2015, ‘utilizing and adapting the delphi method for use in qualitative research’, international journal of qualitative methods 14(5), 1–6. https://doi.org/10.1177/1609406915621381 bray, n., 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orthodontics 30, 245–252. https://doi.org/10.1093/ortho/30.3.245 world health organization, 2011, world report on disability, viewed 19 october 2017, from http://www.who.intl world health organization, 2008, guidelines on the provision of manual wheelchairs in less resourced settings. who press, geneva, switzerland yaghmale, f., 2009, ‘content validity and its estimation’, journal of medical education 3(1). article information authors: anne marie witchger hansen musonde siame judith van der veen affiliations: 1department of occupational therapy, duquesne university, united states of america2cheshire homes society of zambia, cbr programme, zambia 3inclusive development, cbm international, south africa correspondence to: anne marie hansen postal address: 600 forbes avenue, pittsburgh, pennsylvania 15219, united states of america dates: received: 30 dec. 2013 accepted: 01 aug. 2014 published: 25 nov. 2014 how to cite this article: hansen, a.m.w., siame, m. & van der veen, j., 2014, ‘a qualitative study: barriers and support for participation for children with disabilities’, african journal of disability 3(1), art. #112, 9 pages. http://dx.doi.org/10.4102/ ajod.v3i1.112 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. a qualitative study: barriers and support for participation for children with disabilities in this original research... open access • abstract • introduction    • theoretical framework    • literature review       • participation patterns amongst children with disabilities       • direct and indirect predictors of participation       • participation in school and community       • community participation    • conclusion • research method and design    • participants and setting       • data collection       • data analysis • results    • support to social participation    • family    • friends and/or peers    • community and/or neighbours    • community-based rehabilitation staff and services    • personal resourcefulness    • barriers to social participation       • family       • friends       • community and/or neighbours       • schools       • environment       • financial burdens       • lack of awareness and understanding of disability related issues       • personal weaknesses       • strategies to overcome barriers       • expectations for the future       • ethical considerations       • trustworthiness and validity • discussion    • acceptance by family, friends and community    • recommendations for community-based rehabilitation    • schools and future education    • recommendations for community-based rehabilitation    • physical burden    • recommendations for community-based rehabilitation    • financial burden and family income    • recommendations for community-based rehabilitation    • support groups and emotional support for mothers    • recommendations for community-based rehabilitation    • implications for future research    • limitations of the study • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: this qualitative–exploratory study examined the barriers to participation amongst children with disabilities in lusaka, zambia, from the mothers’ perspective.objectives: the objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (cbr) services in lusaka, zambia, perceived and described (1) the level of support they received and the barriers they encountered in terms of their child’s meaningful social participation; (2) the use and awareness of these barriers to identify and pursue advocacy strategies; and (3) hopes for their child’s future. methods: data were collected through semi-structured interviews with each mother in her home. results: findings revealed both support and barriers to the child’s social participation in relationship to their family, friends and community. support also came from the cbr programme and mothers’ personal resourcefulness. mothers identified their child’s school, their immediate environment and financial burdens as barriers to participation as well as their own personal insecurities and fears. strategies to overcome barriers included internal and external actions. the mothers involved in the study hope their child’s abilities will improve with continued cbr services. some mothers described a bleak future for their child due to a lack of acceptance and access to education. conclusion: the findings of this study suggest the significant role the mother of a child with a disability plays in her child’s social participation. recommendations include enhancing cbr programming for families, especially for mothers, and advocating on behalf of children with disabilities and their families to attract the attention of policy makers. introduction top ↑ the united nations children’s fund (unicef 2013) estimates that between 5% and 10% of all children in africa are children with disabilities; children with disabilities are particularly vulnerable and influenced by the extent of their impairment as well as by the sex of the child. research focussing on children with disabilities in developing countries suggests that 90% of these children do not attend school and are thus less likely to engage in other opportunities for social participation (global partnership for children 2012). this study was conducted in lusaka, the capital and the largest city of zambia. it is one of the fastest developing cities in southern africa (world association of business administration and management professionals 2013); lusaka is the centre of commerce and government in zambia. the population of zambia is 13 million people (central statistics office 2011), predominantly composed of indigenous african people speaking a variety of bantu languages as well as english, which is the principal medium of communication. the majority persons with disabilities in zambia live in poverty and generally have low literacy levels disproportionately compared to persons without disabilities (sakala & korpinen 2013). educating children with disabilities remains a challenge for zambia. an understanding of the practice of inclusive education is limited, and although the education of children with disabilities is guaranteed through a number of government policies and legislation (most notably the education policy and the zambia disabilities act of 1996), recent studies have shown very high drop-out and low progression rates for children with disabilities (sightsavers 2013). the ministry of education has indicated that children with disabilities constitute 5.1% of all learners in grades 1–9, but just 1.58% of enrolment for grades 10–12 (sightsavers 2013). the sixth national development plan of 2011 (sndp) has recognised the need to enhance the inclusion of learners with special education needs (lsen) in the mainstream school system (sightsavers 2013). the objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (cbr) services in lusaka, zambia, perceived and described: • the level of support they received and the barriers they encountered in terms of their child’s meaningful social participation. • the use and awareness of these barriers to identify and pursue advocacy strategies. • expectations for their child’s future. the cbr programme serves a population of approximately 350 000 individuals. staff members work with children and adults with all types of disabilities. they provide supervision and support to community-based rehabilitation workers (crws). a crw seeks out people with disabilities who can benefit from ability restoring surgeries, therapeutic interventions and educational services as well as home-based rehabilitation services (blind christian mission n.d.). theoretical framework the world health organization (who 2014) defines disability as ‘impairments, activity limitations and participation restrictions’ including ‘interactions between individuals with a health conditions and personal and environmental factors’. the theoretical framework for this study is based on the international classification of functioning (icf) which shifts the focus away from the cause of a disability to the impact the disability has on the lives of people in society (who 2014). the icf addresses the social model of disability, which regards disability as a social problem and not an individual’s attribute or impairment (forsyth et al. 2007). in the icf study, participation is considered a chief indicator of child health, with or without regard for functional ability or diagnosis (law et al. 2006). children with disabilities are vulnerable to limited participation, which results from the interaction between children and their physical and social environments (forsyth & jarvis 2002; law et al. 2006). the significance of this study lies in the examination of the level of support received and the barriers encountered in terms of the social participation amongst children with physical disabilities in lusaka, zambia, according to their mother’s perspective. the social action goal is to define barriers to full participation for mothers of children with disabilities for future action with the participants of this study. the action component includes efforts to realise fuller participation in a manner that is consistent with the lived experiences of barriers and in ways that ensure that the basic rights of children with disabilities are met and that they are treated with human dignity. literature review although a few studies explore mothers’ experiences of caring for children with disabilities in the african context (gona et al. 2011; mcnally & mannan 2013), no studies were found that address mothers’ perspectives of the barriers they encountered and the level of support they received in terms of their children’s social participation. several researchers explored environmental factors that impact social participation (king et al. 2003; law et al. 2007). bedell et al. (2013) examined patterns of community participation and environmental factors that affect community participation for school-aged children with and without disabilities in the united states of america and canada, and found that stronger efforts are needed to support community participation of school-aged children. participation patterns amongst children with disabilities researchers discovered that children with disabilities tend to be more restricted in their participation and in the scope of their daily activities (e.g. formal and informal leisure and recreational activities outside of school, household tasks and social engagements) than their peers (bedell et al. 2013; brown & gordon 1987; hanvey & avard 1994; mcdougall et al. 2004). children with disabilities often feel socially isolated (anderson, clarke & spain 1982; blum et al. 1991; cadman et al. 1987; la greca 1990; law & dunn 1993).
canchild centre for childhood disability research studied 427 children between the ages of 6 and 14 years with physical disabilities to examine their patterns of participation and to determine the child-specific, family and environmental factors that influenced their participation in formal and informal activities (law et al. 2006; king et al. 2009). they found that some factors are direct predictors of participation and some are more indirect predictors of participation (law et al. 2006). child and family preferences were found to be important predictors of children’s participation following adjustment for the child’s functional ability. they found that factors such as family cohesion and parental perceptions of environments were relatively unsupportive, and supportive relationships for the child indirectly influenced child participation (law et al. 2006). direct and indirect predictors of participation direct predictors of participation include the child’s functional ability (i.e. cognitive, communicative and physical functioning), family participation in social and recreational activities, family values related to intellectual and cultural activities and child preferences for activities (law et al. 2006). indirect predictors of participation include parents’ perceptions of environmental barriers, family cohesion and supportive relationships for the child and family income. they also found that supportive (i.e. accessible, accommodating, socially supportive and nondiscriminatory) and resource-ready environments influenced participation through their effects on children’s functional ability. greater social support from friends, parents, and teachers also enhanced participation by affecting children’s activity preferences. they concluded that families play an important role in providing opportunities, support and encouragement for children to take part in various activities (law et al. 2006). participation in school and community participation in school activities is one of the most important outcomes of children’s inclusion in mainstream schools (eriksson 2005). however, researchers found that children with disabilities in north america still face restricted participation in comparison with their nondisabled peers (pitt & curtin 2004; richardson 2002).harding et al. (2009) interviewed six children with disabilities in canada to gain a better understanding of how they view their participation in out-of-school-time activities in a range of environmental settings. the children identified aspects of their environments and activities that acted as supports or barriers to their participation. environment accessibility and physical comfort were noted as supports. social support came in the form of friends, friendly helpers, pets and neighbours. lastly, participants’ health statuses were considered a barrier to their participation in some settings (harding et al. 2009). community participation bedell et al. (2013) examined patterns of community participation and environmental factors that affect community participation for school-aged children with and without disabilities in the united states and canada, and found that stronger efforts are needed to support community participation of these children. conclusion it is vital that parents, service providers and policy makers concerned with children with disabilities understand the barriers to and supports for participation (king et al. 2003; law et al. 2006). this study will explore this issue of social participation for children with disabilities in zambia. research method and design top ↑ this is a qualitative–exploratory study that allowed researchers to explore the support for and barriers to children with disabilities’ social participation from their mother’s perspective. the qualitative methods are phenomenological in nature (benner 1994) as this study explored the lived experience of mothers. the design used participatory action research methodologies (minkler & wallerstein 2003; patton 2002) as it was a collaborative process that equitably involved all partners including mothers, cbr staff and researchers in the research process, and recognises the unique strengths that each stakeholder brings. a further purpose of this qualitative, community-based participatory research was to gain knowledge about social participation of children with disabilities to move into action for social change to improve community programmes to eliminate the difficulties they face. the specific research questions that guide this research study are as follows: • how do mothers of children with physical and cognitive disabilities perceive and describe the level of support they receive and barriers to their child’s meaningful social participation? • how do mothers of children with physical disabilities perceive and describe their understanding of these barriers to identify and pursue advocacy strategies to address these barriers? • how do mothers of children with disabilities perceive and describe their expectations for their child’s future? participants and setting eleven mothers of children with physical disabilities were interviewed. in two cases, the mother had passed away and a sister of the mother became the primary caregiver who in both cases was interviewed. mothers’ ages ranged from 24–45. their children with disabilities included a total of ten boys and one girl, whose ages ranged from 2–21 and had a diagnosis which included cerebral palsy, spina bifida, cerebral malaria and spinal muscle atrophy. all children had participated in cbr services at some point (see table 1a, table 1b and table 1c). cbr offers intervention programmes to support inclusive education, livelihoods, health and rehabilitation and support for activities of daily living (adl). mothers of children with disabilities who participated in this study described the daily occupations of their children in terms of (see table 1c): table 1a: demographics of the children with disabilities. table 1b: demographics of the children with disabilities. table 1c: demographics of the children with disabilities. • communication • activities of daily living • mobility • play • school or education • community activities. data collection interviews were between 30 and 60 minutes and took place in each respondent’s home in various villages in the lusaka area. interviews were conducted in the local language and in english by the research team comprising the primary researcher, coresearcher and a community health worker. researchers followed a semistructured interview guide. data analysis data analysis began by using a process of open coding. initially data was organised qualitatively into open (broad) codes by analysing the responses to the interview questions. continued comparison of data within and across interviews allowed the researcher to reduce the data into categories. central ideas were refined as concepts, and the properties and dimensions of these concepts were identified in such a way that they were delineated; the range of properties of any given category were specified and grouped together (patton 2002). results top ↑ findings of this study revealed that mothers of children with disabilities perceived and described family, friends and community as both support for and barriers to the child’s social participation. they also described their personal resourcefulness, staff members and services at the cbr as support. mothers identified schools, the environmental context and financial burdens as barriers to participation, on one hand, and their own personal weaknesses, insecurities and fears, on the other. in addition, mothers described strategies to overcome barriers in terms of their internal and external actions. thus, many mothers described internal strategies such as prayer, a deep faith and trust in god and maintaining a positive attitude as a form of internal action. external strategies, on the other hand, included joining a support group, learning more about disability to better understand their child’s condition, encouraging their child to be more independent in dressing, feeding and playing with other children, and seeking more cbr services. when asked to describe their expectation for their child’s future, mothers hoped that their child’s abilities would improve and that they would receive support from the cbr programme in the form of equipment and more services. however, others described the future of their children as bleak due to a lack of acceptance and access to education. support to social participation mothers claim that their support for their child’s social participation is the people and services that encourage the child to engage in social activities in various contexts. family some mothers described their family as supportive in terms of their child’s social participation; for example, some family members accept the child with a disability and welcome the child to participate in family celebrations and other activities. one mother stated the following: ‘most family members accept the condition of my son. they invite us to family celebrations. that gives me strength to commit myself to his condition and to improve’ (mother of pp, 11-year-old child with cerebral palsy). friends and/or peers a few mothers described their child’s friends as accepting of the child’s condition and, as a result, they play together. several mothers reported that younger children in the neighbourhood came to their house to play: ‘when playing with friends he can do more things – like he can do a somersault when crawling and sort out objects and play with toy cars’ (mother of kb, 6-year-old child with brain damage and cerebral palsy). community and/or neighbours several mothers described the community, particularly their church, as being supportive and welcome their children to participate in sunday services; for instance, one mother told a story of how community members used to laugh at her child’s condition during his first few years of his life, but has now come to accept him: ‘neighbours used to treat him as abnormal but with explanation they understand and accept him as “one of the kids”’ (mother of ms, 2-year-old child with cerebral palsy). community-based rehabilitation staff and services mothers described the cbr as a strong support for their child’s social participation. most mothers expressed appreciation for cbr services that support their child’s participation such as movement and mobility therapy, orthopaedic equipment, as well as educational and emotional support:‘after cbr he can walk better and his arm is in a better position than before. he can then interact with friends and play with them. his attitude has changed too now he can walk and move around, making life easier. there has been a big change, walking was a problem before, but now he can walk better, and his arm is in a better position than before. he can interact with his friends and play with them. he plays daily without any problem.’ (mother of ms, 2-year-old child with cerebral palsy) many mothers described cbr support groups as offering encouragement to their child and provide hope for the future. personal resourcefulness several mothers described their own resourcefulness as strength. apart from belonging to support groups, one mother also described her livelihood activities as a support to her child’s participation:‘by engaging in income generating activities, i feel as if i can help my child engage in more activities and help myself by paying school fees and paying for food.’ (mother of mp, 11-year-old child with spina bifida) barriers to social participation the research established that barriers to social participation for children with disabilities are in the form of people and services that prevent or discourage these children from engaging in activities. family some mothers claimed family members are a barrier to their child’s social participation as they do not accept the child: ‘our families live close by. however, they do not invite us to celebrations. they family never accepted our son. i think they fear him!’ (mother of mp, 11-year-old child with spina bifida).several mothers reflected how their extended family members or the fathers of the children do not accept their disability and therefore would not help with the child’s care: ‘we have no family members near they live far away and only come to visit us when major problems happen’ (mother of tm, 8-year-old child with cerebral palsy). in addition: ‘his father does not accept him! he will not help me take care of him.’ (mother of fh, 4-year-old child with spinal muscle atrophy) in some situations, one side of extended family members blames the other family members for the disability: ‘my family and my husband’s family blame another family for my son’s disability. when they are together, they argue about whose fault it is. no one in either family seems to understand disability.’ (mother of mi, 19-year-old child with cerebral palsy) friends a few mothers described their children’s friends as a barrier. one mother told a story of how peers beat her child whilst her other children were carrying him to a cbr institution: ‘one day when his siblings were taking him to the rehab center, they ran into mean kids. his siblings escaped but left him behind. his friends beat him up!’ (mother of mi, 19-year-old child with cerebral palsy). community and/or neighbours many mothers claimed their communities do not accept their child and, as a result, did not take them to community events: ‘people in the community focus on his disability and laugh at him, so in those early days, i stopped taking him to any community activities except to church. some do not take their child to church in fear of being shunned.’ (mother of mi, 19-year-old child withcerebral palsy) schools many mothers described the school environment and teachers as major barriers to their children’s lack of social participation; for example, a mother described how her disabled son’s teacher told her that he does not have any potential for the future and thus should not take up classroom space: ‘i took him to school but they told me they cannot give him space because they are not equipped to handle a child with a disability. as i was leaving the school she called out that children like mine do not belong in school!’ (mother of lm, 10-year-old child with cerebral palsy) several mothers described how head masters of schools accepted their children into their schools, yet the teachers refused to allow children with disabilities into the classroom, claiming they did not have the equipment or skills to accommodate them. environment many mothers described the rough condition of the roads in their villages, intense traffic patterns in the city and the inaccessible public transport systems as barriers to their children’s social participation. one mother described how hard it is to transport her child in his wheelchair to church, only to go back after wheeling him a short distance as a result of the numerous potholes in the road’s surface and the increasing weight of her 11-year-old son: ‘it is too far to push him in his wheelchair to school, church or social events on this very rough dirt road. we rarely go anyplace, we stay home’ (mother of fh, 4-year-old child with spinal muscle atrophy). financial burdens many mothers told stories of financial burden that resulted from the additional expenses of raising a child with a disability. they often lamented that they have little time to earn money whilst caring for their child which requires them to be home all day:‘fees for health services from my child, school fees and transportation fees to and from the hospital are a huge financial burden. i take care of my son all day long, and do not have time to find paid work.’ (mother of tm, 8-year-old child with cerebral palsy) lack of awareness and understanding of disability related issues several mothers claimed their families lack awareness regarding disability and therefore do not understand issues related to disability and are afraid of being near a child with disabilities: ‘some people in our community ask me questions, like“why are you carrying your son” and “why doesn’t he talk?”. they don’t seem to understand disability’ (mother of kb, 10-year-old child with cerebral palsy). personal weaknesses many mothers described themselves as a barrier to their own children’s social participation; for example, some mothers indicated that they feel alone and isolated. they expressed both emotional and physical burden: ‘my problems seem so big and the burden is great and falls on me. everything falls on me!’ (mother of ms, 10-year-old child with cerebral palsy).in addition: ‘he needs so much more attention than the other children. i do not have a strong support system, so i feel i need to be near him and with him at all times.’ (mother of pp, 11-year-old child with cerebral palsy) many of these mothers described how uncomfortable they feel when trying to explain to family and friends what it takes to raise a child with a disability. some mothers feel they lack the basic skills needed to overcome these barriers: ‘i feel stuck! i do not know what to do to advocate for my son. i do not know how to read or write. it is difficult to communicate with others about the burden of his physical condition.’ (mother of ms, 10-year-old child with cerebral palsy) several mothers described their reluctance to take their children to community activities because they fear that their children can fall and hurt themselves, and that they can be disruptive to their peers: ‘i cannot take him to church or other places in the community because i fear he will be disruptive and he is too heavy to carry’ (mother of pp, 11-year-old child with cerebral palsy). mothers of children aged between 10 and 15 years also complained of their children being too heavy to carry during activities. strategies to overcome barriers mothers of children with disabilities described their strategies to overcome the barriers to their child’s social participation as internal actions and external actions. internal strategies are personal, intrinsic actions which mothers employed to address the barriers whilst attempting to engage their children in home, school or community activities. many mothers described prayer and a deep faith and trust in god as an internal strategy that gives them strength to handle the challenges they face: ‘my strength and inspiration comes from god. without prayer and my faith, i could not do this!’ (mother of pp, 11-year-old child with cerebral palsy).in addition: ‘i stay strong by the grace of god!’ (mother of tm, 8-year-old child with cerebral palsy). many mothers discussed how they keep a positive attitude and rely on their internal strength to handle the struggles they face as well as strength from other parents: ‘to take care of him, i had to learn to accept him and accept that he had problems. this helped make things easier’ (mother of ms, 2-year-old child with cerebral palsy). in addition: ‘i spend time with other parents to talk and think positively.’ (mother of fh, 4-year-old child with spinal muscle atrophy) external strategies are outward actions, which mothers described they employ in an attempt to address the barriers they experience when they engage their children in home, school or community activities. mothers described their outward actions as seeking support from other parents of children with disabilities by organising or joining a support group: ‘i have been reaching out for spiritual support from my church. i joined a support group there that really helps me feel that i am not alone’ (mother of mi, 19-year-old child with cerebral palsy). in addition: ‘i formed my own support group with other moms of kids with disabilities; now i know that i am not alone!’ (mother of ms, 2-year-old child with cerebral palsy). mothers described personal actions such as educating themselves on disability related issues to improve their understanding of their children’s condition: ‘i have been learning about health and nutrition for my son, and what to expect with his conditions and his disability’ (mother of ms, 2-year-old child with cerebral palsy). several mothers described how they encourage their children to be more independent such as children being able to dress and feed themselves, and by playing with other children: ‘i tell my son he has to take care of his things, such as putting things away and become more independent!’ (mother of ma, 2-year-old child with cerebral palsy). in addition: ‘i tell him to “go play” with your friends! don’t stay at home all day!’ (mother of ma, 10-year-old child with cerebral palsy). many mothers address the barriers to participation their children face by seeking more cbr services: ‘i will continue to take my son to rehab to help him with his mobility. i hope they can help him learn to do more and take care of himself, too.’ (mother of ma, 10-year-old child with cerebral palsy) expectations for the future many of the mothers emphasised their expectations in terms of their children’s future. most mothers perceived and described their child’s future in terms of their expectation that their child’s abilities will improve: ‘i hope my child will stand and walk in the future’ (mother of fh, 4-year-old child with spinal muscle atrophy).in addition: ‘i hope he will become more independent in the future so he can take care of me in my old age’ (mother of mi, 19-year-old child with cerebral palsy). when describing these expectations for the future, most of these mothers included their expectations for more intensive cbr services such as teaching their children to walk, to become independent and to provide more therapeutic exercises: ‘he needs more intensive exercises at cbr so that he can walk. if he could walk we could find him a school’ (mother of kb, 6-year-old child with brain damage and cerebral palsy). in addition: ‘we need cbr to teach him to become more independent in his adls’ (mother of tm, 8-year-old child with cerebral palsy). their hopes also included more equipment for their child:‘i really need a wheelchair to take him out to school and church’ (mother of fh, 4-year-old child with spinal muscle atrophy). in addition: ‘i would like a conventional wheelchair with a tray for him to write on’ (mother of db, 15-year-old child with spina bifida). most mothers hope that cbr staff will assist them with finding and funding their child’s education including tertiary education and eventually to find employment for their child:‘i would like to have cbr place him in a school that meets his needs’ (mother of ma, 10-year-old child with cerebral palsy). in addition: ‘i need cbr to help pay for his schooling’ (mother of mp, 11-year-old child with spina bifida); and ‘i want him to go to college and for cbr to provide assistance for that.’ (mother of sm, 21-year-old child with cerebral palsy) many mothers had a positive outlook in terms of their children’s future and described how they look forward to ongoing emotional and financial support from support groups hosted by the cbr: ‘we really appreciate the emotional support from cbr staff. although our son no longer needs therapy, we would appreciate on-going emotional support for our son’ (mother of pp, 11-year-old child with cerebral palsy). in addition: ‘my family and i need help with our outlook on the future. i am not sure what to expect’ (mother of pp, 11-year-old child with cerebral palsy). some mothers described a bleak outlook for their child’s future describing how they are worried that their child might never become independent and that he or she will be a burden for the rest of their life. ethical considerations approval of this study was secured by the duquesne university institutional review board for protection of human subjects in the study. requirements for confidentiality were also observed. respondents who agreed to participate in this study signed a consent form to participate in the research study. the purpose, risks and benefits of the study were explained in this form as well as requirements for confidentiality. recruitment of participants occurred as a collaborative effort between one of the coinvestigators and the cbr staff. informed consent was obtained prior to beginning the interview, organised by cbr staff. all institutional review board regulations were carefully followed to protect participant confidentiality. trustworthiness and validity the findings of this study are trustworthy as they are based on the human experience as described by all participants. this study is qualitative in nature; therefore, researchers do not guarantee that the same results would be uncovered if this study was replicated. verification of data was also done by relating the collected data to each respondent after each interview. discussion top ↑ the mothers in this study described their child’s activities as very basic and mostly taking place at home with few social activities and recreation activities taking place. acceptance by family, friends and community mothers in this study described both how acceptance or rejection of their children by family, friends and the community impacts positively and negatively on their children’s social participation. recommendations for community-based rehabilitation these findings suggest cbr programmes might create family and community education programmes to inform and educate entire communities on the causes and implications of living with a disability. further, such programmes involve ways of teaching community members how to support and encourage a household of a child with a disability in terms of how to be child-centred, and to help the mother engage their child in activities that are beneficial to the child’s development. if communities are made aware of the difficulties associated with living with a disability, children with disabilities and their families may have a greater chance of being accepted and thus enhance children with disabilities’ social participation and quality of life. schools and future education although inclusive education is part of the zambian government’s educational policy, more than half of the children in this study did not attend school. a shortage of accessible educational services in terms of children with disabilities was a major concern of all the interviewed mothers; most of them look to cbr to assist them in advocating for accessible schools and financial support for their children’s education. recommendations for community-based rehabilitation cbr programmes might consider teaching advocacy skills to families of children with disabilities to encourage families to be more proactive and to take responsibility for securing educational opportunities for their children. further, the study observes that cbr staff members are expected to consider advocating for and with families of children with disabilities in an effort to include children with disabilities in zambia’s education system. physical burden mothers of children with disabilities described the physical burden of carrying their children and how this creates a barrier to taking their children to school, church or in engaging in other community activities. recommendations for community-based rehabilitation the study established that most of the children with disabilities who participate in cbr services had already received wheelchairs where appropriate. yet, mothers expressed a desire for the cbr to purchase suitable wheelchairs for their children that can withstand the rough terrain of village roads. it might be useful for cbr to consider the following questions: • is it realistic to upgrade mobility equipment as a child grows older? • are there other nongovernmental organisations to assist in addressing equipment needs? financial burden and family income most mothers discussed their limited family income as a barrier to their children’s social participation. some mothers depend on family members to help pay school and medical fees. all the mothers involved in this study seek access to education programmes and general opportunities for their child that would normally be denied to their children because these opportunities cost too much money. recommendations for community-based rehabilitation livelihood activities are part of this cbr programme. however, some mothers seek different types of livelihood activities other than those offered to them by cbr. a good example is the making of crafts or tailoring which they can do at home whilst caring for their children. cbr programmes should consider expanding livelihood programming to meet the needs of mothers who need to be at home all day because of their children’s conditions. support groups and emotional support for mothers most mothers described cbr as a strong support for their child’s social participation. yet, many mothers described themselves as a barrier to their child’s social participation; these mothers feel emotionally insecure and lack basic skills needed to help their child engage and participate in developmental activities. recommendations for community-based rehabilitation findings suggest that mothers need a stronger support system. cbr might consider providing emotional and spiritual support system for mothers by expanding the support group and networks through collaborating with local churches and faith communities. another way might be to expand the community health worker roles and responsibilities to include educating and mentoring mothers. implications for future research this research points to the need for a broad-based study to explore patterns of social participation of children with disabilities in africa as well as the barriers and supports for social participation and effective strategies for mothers to help their children overcome these barriers. researchers might also study contexts in which inclusive education is enforced in africa and effective strategies to reach that goal so that all children with disabilities might have access to education that meets their needs. limitations of the study limitations in this study include a small sample size and unequal distribution of gender amongst the interviewed mothers of children with disabilities. another limitation is that the conclusions are not generalisable as a result of the small sample size.some qualitative researchers argue that validity is not applicable to qualitative research and, at the same time, realise the need for a qualifying check or measure for their research (winter 2000). the quotations from participants validate the themes. the meanings found in the data and in the conclusions were based on evidence. the researchers used a systematic, analytic approach to uncover an accurate representation of the data collected. the rigour of this study is reflected in the use of reflexivity, particularly visible in the primary investigator who sought constant input in terms of the data analysis process and coding from the local zambian co-researcher. the research also took into account the fact that a so-called ‘westerner’ from a developed country conducted research within a developing country. this bias was addressed by involving the zambian co-investigator in all aspects of the study. conclusion top ↑ this study is significant in that it is one of only a few studies that explored the level of support received and/or offered and barriers experienced in terms of social participation for children with disabilities in africa. cbr staff might consider teaching advocacy skills to all stakeholders of children with disabilities including families and communities, but especially to the children’s mothers. cbr staff might further consider collaborating with mothers and community stakeholders in an effort to develop policies that are holistic, child-centred and address the challenges experienced by children with disabilities and their families. together, mothers can advocate for effective policies, inclusive education, and thus stronger families, communities and schools, focussing on inclusion for all. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions a.m.w.h. (duquesne university) was the project leader and responsible for developing the research design, protocol and institutional review board approval, conducting the interviews, data analysis and writing the manuscript. m.s. (cbr programme) coordinated the selection of participants and interviews, interpreted local language when needed during the interviews, contributed to the data analysis and assisted with editing the final manuscript as needed. j.vd.v. 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(icf), viewed 11 december 2013, from http://www.who.int/classifications/icf/en abstract introduction current research context method results discussion conclusion acknowledgements references footnotes about the author(s) mark carew leonard cheshire, london, united kingdom marcella deluca leonard cheshire, london, united kingdom nora groce ucl international disability research centre, london, united kingdom sammy fwaga leonard cheshire, london, united kingdom maria kett ucl international disability research centre, london, united kingdom citation carew, m., deluca, m., groce, n., fwaga, s. & kett, m., 2020, ‘the impact of an inclusive education intervention on learning outcomes for girls with disabilities within a resource-poor setting’, african journal of disability 9(0), a555. https://doi.org/10.4102/ajod.v9i0.555 original research the impact of an inclusive education intervention on learning outcomes for girls with disabilities within a resource-poor setting mark carew, marcella deluca, nora groce, sammy fwaga, maria kett received: 18 july 2018; accepted: 28 nov. 2019; published: 13 may 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite a global commitment to the right to education for persons with disabilities, little is known about how to achieve inclusive education in practice, particularly in lowand middle-income countries (lmics), where the majority of the world’s people with disabilities reside. moreover, although exclusion from education is magnified by intersecting gender and socioeconomic inequalities, there is especially little knowledge regarding what approaches to inclusive education are effective amongst girls with disabilities living in resource-poor settings. objectives: the objective of this article was to assess the impact of an inclusive education intervention led by a non-governmental organisation (ngo) on the educational attainment of girls with disabilities in the resource-poor lakes region of kenya. method: a quasi-experimental design was employed, where the literacy and numeracy educational attainment of the intervention and control groups was compared over two time points a year apart (time 1 and time 2; total matched n = 353). during this period, activities pertaining to six core components of a holistic inclusive education model were implemented. results: relative to the control group, girls with disabilities in the intervention group reported a greater increase in literacy and numeracy attainment, adjusted for grade and level of functional difficulty. conclusion: findings suggest that the intervention was successful in engendering additional improvements in the educational attainment of girls with disabilities from the resource-poor lakes region of kenya. results highlight both the applicability of ngo-led interventions in settings, where national implementation of inclusive education is constrained, and the potential of taking such interventions to scale. keywords: inclusive education; gender; disability; poverty; kenya. introduction the united nations (2007) convention on the rights of persons with disabilities has to date been ratified by 177 countries,1 signifying a global commitment to the rights of persons with disabilities, including the right to education (article 24). notwithstanding, in practice, gaps in the provision of education to children and adults with disabilities persist, with recent statistics suggesting that in some countries one in two children having a disability is not attending school regularly (unesco 2017). moreover, the recent sustainable development goals (sdgs) place emphasis on the provision of inclusive and quality education for all (sdg 4: ‘ensure inclusive and quality education for all and promote lifelong learning’), and as such, along with other marginalised and excluded groups, the sdgs have the potential to change the landscape of people with disabilities in terms of their access to education (department for international development [dfid] 2000). however, for lowand middle-income countries (lmics), there are particular challenges in meeting these goals in practice. conceptually, inclusive education originated in the global north, and there is often much debate about how it should be implemented within many settings in lmics (miles & singhal 2010). this leads to a disconnect between policy and practice. for example, wapling (2016) notes that against the backdrop of relatively strong inclusive education policies in many settings (e.g. cambodia, southern africa), in practice what is adopted is integration of children with disabilities into mainstream schools, with little attention to how other contextual realities, such gender and poverty, intersect with disability and impact access to education. furthermore, the implementation of truly inclusive education models (i.e. one system for all children regardless of disability status) in lmics may be constrained by a dearth of real resources, ineffective teacher training and absence of inclusive policies (carew et al. 2018; donohue & bornman 2015; kuyini & desai 2007; nkonyane & hove 2014). for instance, where teachers are not provided with good quality training and equipment (e.g. teaching and learning aids) to help facilitate the inclusion of children with disabilities in mainstream classrooms, they may ultimately remain unwilling to adopt inclusion in practice (de boer, pijl & minnaert 2011), despite agreeing with the goals and philosophy of inclusive education in the abstract. whilst there is a general need to understand, particularly in lmics, what specific approaches work in terms of building blocks (i.e. teacher training; see, e.g., bakhshi, kett & oliver 2013; carew et al. 2018) that create an inclusive classroom (i.e. positive teacher attitudes to inclusion and adoption of inclusive teaching practices; see de boer et al. 2011 for an example), ultimately, the ‘litmus test’ for identifying progress towards the goal of inclusive and quality education for all is if children with disabilities experience improvements in educational attainment whilst participating in inclusive classrooms, relative to their attainment in non-inclusive classrooms. this includes those children with disabilities who may experience more marginalisation relative to their peers. for instance, girls (as well as women) with disabilities are often described as possessing the ‘double disadvantage’ of experiencing marginalisation on the basis of both their gender and ability status (fairchild 2002; moodley & graham 2015; sheldon 2014). moreover, poverty and deprivation are thought to magnify experienced inequalities, so that girls and women with disabilities living in lmics, and, in particular, resource-poor areas in these settings, are likely to experience poorer outcomes relative to other groups (emmett & alant 2006). in the context of education, for instance, this is reflected in rates of education being lower amongst girls compared to boys with disabilities (unesco 2017). girls with disabilities may also face specific and particularly distressing forms of marginalisation that impede their access to education such as sexual abuse in school (e.g. caldas & bensy 2014; phasha & nyokangi 2012) or forced marriage at an early age (groce, gazizova & hassiotis 2014). consequently, inclusive education models that are generally effective for children with disabilities may need additional components to allow the most marginalised of children with disabilities to access high-quality education. often, this may necessitate a broader focus than just focusing on school and classroom. one example provided by scior et al. (2016) is the role that parents and community members with intellectual disabilities may play in combating intellectual disability stigma, which is widespread compared to that encountered by other impairment groups. in a similar respect, inclusive education for girls with disabilities may necessitate engendering positive community attitudes about educational provision for both children with disabilities and girls in general. in light of the current practical constraints in the implementation of inclusive education models in lmics, there is a lack of empirical data on what specific approaches may provide children with disabilities with a quality education. in particular, less data are available on what enables learning for marginalised groups of children with disabilities in lmics, including girls with disabilities from resource-poor regions of such countries. as delivery of inclusive education models in these areas is often fulfilled by non-governmental organisations (ngos) (carew et al. 2018), empirical analyses of such interventions can provide initial insight for governments and policy-makers into what approaches are effective in both real-life contexts and amongst the most marginalised of children with disabilities. current research context although overall enrolment in primary education is increasing in kenya because of the introduction of measures such as free primary education in 2003 and increased social protection access, the number of girls with disabilities accessing primary education remains low, and the number of these girls dropping out of education is also increasing. the lakes region of kenya, located in the west, faces particular challenges in terms of deprivation, including in the context of education, and this deprivation disproportionally affects girls with disabilities. for example, between 2003 and 2009, the lake region saw an increase of 12.5% in primary school enrolments (kenya ministry of education 2017). however, in 2009, dropout rates rose to 9.2%, the highest in the country. moreover, girls accounted for just 1.3% of all school attendants during this period, and although no representative data are available for the number of these girls who are disabled, it is assumed to be very small, given the extant work on disability and school attendance (e.g. mizunoya, mitra & yamasaki 2018; unesco 2017). moreover, even for the girls with disabilities who managed to attend and stay in school, existing research (e.g. wapling 2016) has highlighted numerous sociocultural (e.g. attitudes) and school-level barriers that prevent such girls from staying away from schools and study and learn on an equitable basis with non-disabled peers. disability is both a cause and a consequence of poverty (dfid 2000), meaning that the more impoverished lakes region of kenya likely contains a greater proportion of people living with disabilities compared to other regions of kenya. for example, in two of its constituent sub-counties, kisumu east and mbita, it is estimated that approximately one-fifth to a quarter of girls aged 6–11 years have disabilities compared to a national average of 5% – 10% (kenya national bureau of statistics 2005). the demographics of the lakes region of kenya made it a suitable candidate for a field test of an inclusive education intervention developed by the uk-based ngo leonard cheshire. the research was funded by the uk government (department for international development) girls education challenge (gec) fund, designed to ‘…help up to a million of the world’s poorest girls improve their lives through education and find better ways of getting girls in school and ensuring they receive a quality of education to transform their future’ (https://www.gov.uk/guidance/girls-education-challenge). results from a dedicated training component designed to address teacher beliefs, attitudes and practices around inclusive education have already been reported in carew et al. (2018). the objective of this research was to assess the impact of the intervention on the educational attainment of girls with disabilities in the lakes region of kenya. method design at the outset of the study, a scoping exercise was conducted to discern the barriers that girls with disabilities face to accessing education. specific barriers identified by the scoping exercise included inaccessible school buildings; learning materials; teaching methods; and negative attitudes from parents, community members and teachers about disability in education. it was also found that disabled girls and their families did not receive the full necessary educational and rehabilitative support they needed to access mainstream education (e.g. help with additional costs). these findings were largely consistent with the extant literature on barriers to education that disabled children face within other resource-poor contexts (e.g. wapling 2016). as a result of this scoping exercise, intervention activities were explicitly aligned with the identified barriers as part of a wider project theory of change. the intervention implementer (leonard cheshire) is a uk-based global disability-focused ngo that supports disabled people’s access to education (as well as work and employment) in several countries around the globe, including in southern and east africa, where the organisation also has regional offices. the organisation’s intervention is based on a set of six main interlinked components (leonard cheshire 2017). figure 1 displays the conceptual model. we summarise each of these components below in turn and provide examples of the activities undertaken under each component. figure 1: the (organisation) inclusive education model. the first component was the creation of an accessible learning environment. this included building of ramps, widening of windows and fitting of translucent sheets to allow more light in classrooms, thus enabling those with low vision to see better, as well as providing assistive devices (e.g. wheelchairs and hearing aids) and teaching and learning materials. the second set of activities concentrated on raising awareness about both disability and gender issues amongst caregivers and the community to challenge deeply rooted stereotypes and practices about disabled people in general and girls in particular (e.g. that they cannot learn or learn as capably as others). specifically, a small group of purposively selected community members were trained on disability rights, gender issues and inclusive education, and subsequently cascaded this training throughout each community. the third component of the project was the development and running of on-going child-to-child activities (i.e. peer support and after-school clubs) designed to promote integration and socialisation between girls with and without disabilities. the fourth component of the project trained teachers at project schools on inclusive education practices and disability rights (see carew et al. 2018). the fifth component of the project supported the identification and assessment of disabled children (e.g. by liaising with external staff regarding unidentified children living with a disability). finally, to ensure intervention benefits continued beyond the period of direct activity, the sixth component of the project advocated for policy change at the county and national levels (e.g. pushing for a review of the country-wide special needs education policy). to investigate the efficacy of the intervention on the educational attainment of girls with disabilities, this study adopted a quasi-experimental design, in which the impact of the intervention was assessed over two time points (time 1 and time 2). specifically, a group of girls with disabilities who received the intervention were compared with a control group of girls with disabilities who did not receive the intervention. participants the time 1 intervention sample comprised 406 girls with disabilities who were attending primary schools in the lakes region of kenya where intervention activities were being conducted. the primary school classes these girls were drawn from ranged from grade 1 to grade 8 (aged from 6 to 14 years) and the distribution by grade ranged from 8% to 17% of the sample. the most frequent disability reported was hearing impairment (n = 97; 24%), followed by visual impairment (n = 92; 23%). the time 2 intervention sample comprised 289 girls (an attrition rate of 29%). the time 1 control sample comprised 108 girls with disabilities attending primary schools within the lakes region of kenya where intervention activities were not being conducted. these girls were drawn from the same range of primary school classes (i.e. grade 1 to grade 8) and each class contained 6% to 19% of the sample. the most frequent disability reported was physical disability (n = 37; 34%), followed by intellectual disability (n = 20; 19%). the time 2 control sample comprised 64 girls (an attrition rate of 41%). the smaller size of the control group is indicative of the substantive real-life barriers that girls with disabilities face in obtaining education in kenya. that is, given that girls with disabilities are more likely than non-disabled peers to not attend school regularly in the absence of any intervention (unesco 2017), it was not possible to obtain a larger sample of control girls that could be meaningfully compared with the intervention group.2 measures uwezo english literacy, kiswahili literacy and numeracy test scores: the uwezo test is a pretested and validated tool administered within households across east africa to assess learning in english and kiswahili3 literacy as well as numeracy skills at lower primary levels (uwezo 2009). in each of the three domains, the administered test contains several exercises that are given to participating children by trained assessors. based on the competencies displayed by each child (i.e. in english literacy, kiswahili literacy and numeracy), the assessor awards them a score. in our study, following uwezo guidelines, the english and kiswahili tests comprised five possible levels corresponding to the assessed competencies of the child. (‘nothing’, ‘letter’, ‘word’, ‘paragraph’ and ‘story’). the first four of these signify whether the child could read the descriptor in questions (e.g. letters), whilst the last signifies that the child could broadly comprehend the meaning of a passage of text. similarly, following uwezo guidelines, competency in numeracy was assessed using seven possible levels (‘nothing’, ‘counting [dots]’, ‘number recognition’, ‘addition’, ‘subtraction’, ‘multiplication’ and ‘division’).4 additionally, all administered tests were converted to braille to ensure that materials were accessible to girls with visual disabilities. severity of disability: the washington group short set of questions was used to measure the severity of disability (madans, loeb & altman 2011). the questions are measured on a 4-point scale (1 = no, no difficulty, 4 = cannot do at all), and are asked whether respondents can complete a range of activities. specifically, the following items were used: ‘do you have difficulty seeing, even if wearing glasses?’; ‘do you have difficulty hearing, even if using a hearing aid?’; ‘do you have difficulty walking or climbing steps?’; ‘do you have difficulty remembering or concentrating?’; ‘do you have difficulty with self-care, such as washing all over or dressing?’ procedure at its inception, the project firstly trained community resource workers, who collected data on primary enrolment in five sub-counties of the lakes region (kisumu east, kuria east, mbita, migori and siaya) and worked with kenyan government-mandated education assessment resource centres (earcs) to identify 2 500 girls with disabilities. the project also liaised with the kenyan government to select 75 schools (50 intervention and 25 control) across five counties, half of which would receive the intervention and the other half which would not receive the intervention. the project employed an external evaluator who developed a sampling framework to ensure sample representativeness in each group (i.e. intervention and control) across counties and grades (i.e. class) and collected data from this subsample of girls. at both data collection points, quantitative data collection, including uwezo assessment, was carried out at the girls’ households (with consent from their caregiver) by specially trained data collectors. time 1 data were collected at the end of 2015 (i.e. november–december) over a period of a month, whilst time 2 data were collected a year later at the end of 2016 (i.e. november–december), also over a month period. at the conclusion of the project in early 2017, data were provided to the authors who conducted further secondary analysis of the project’s midline and endline data (see below).5 analytical strategy we used a difference-in-difference approach to assess the impact of the intervention over the studied period by comparing the difference in change (i.e. time 2 – time 1) in the girls’ respective learning score (i.e. english, kiswahili and numeracy) within the intervention and control groups. our analyses were performed using the statistical package spss version 24. the choice of analytic strategy was influenced by natural limitations present in our data in light of its field-based settings related to non-random differences between the groups. specifically, although data were collected from a pre-intervention baseline group of girls with disabilities, over three-quarters were subsequently assigned by the kenyan system to schools outside the intervention areas and had to be substituted at the subsequent data collection points. consequently, this study reports on findings from a sample of girls with disabilities only from the midline (i.e. time 1) and the endline (time 2) project phases. as such, the intervention group had already been exposed to some of the intervention activities at the first assessment point, although intervention activities continued through the project duration. accordingly, at time 1, analysis (controlling for grade) revealed that english and kiswahili scores were higher in the intervention group relative to the control group (range: p = 0.003–0.046), which is consistent with a potential positive impact of the intervention prior to time 1. there was no differences in numeracy scores between the groups (p = 0.192). secondly, initial analysis revealed that at time 1, the intervention and control samples differed in their grade compositions, with those in the intervention group belonging to a significantly higher grade compared to the control (p = 0.018). finally, the intervention and control groups differed in the functional difficulty caused by their disability. that is, the intervention group reported significantly more difficulty with both seeing and hearing relative to the control, whilst for difficulty in walking, the reverse was identified (all p < 0.001). there was no significant difference between the difficulty in concentrating and difficulty with self-care (range: p = 0.270–0.757). this was likely as there were more girls with an assessment of visual and hearing impairment in the intervention group (24% and 23% of the sample, respectively) compared to the control (14% and 12%), whilst girls with physical disabilities were underrepresented (13% in the intervention group vs. 34% in the control group). this is also likely because of the substitution of cases from baseline described above (i.e. the project had to select girls that were enrolled within intervention schools). the application of the difference-in-difference methodology allows for the evaluation of interventions even where there is extant cross-group selection bias (i.e. differing characteristics), as in this case (gertler et al. 2016). that is, instead of comparing post-intervention outcomes between intervention and control groups, which may be influenced by previously existing outcomes (measured and unmeasured variation), the difference-in-difference approach compares the change in outcomes over time in the intervention group with the comparison control group. thus, a key assumption is that the comparison group must accurately represent change in outcomes that would have occurred in the absence of any intervention, not that there is equivalence between the groups at the outset of measurement (gertler et al. 2016). reflexivity in terms of global north–global south collaboration, partnership has been problematised, particularly in terms of its model of capacity building, which often implicitly denotes global south actors as the beneficiaries of interventions and the global north as providers and thus creates a power asymmetry (binka 2005). with this in mind, two broad points are relevant to be raised about the intervention and our analyses. the first point is that although project funding and implementing ngo stem from the united kingdom, the intervention activities were designed and facilitated by kenyan team members based locally at a regional office in western kenya, with input from uk-based colleagues. similarly, the external evaluators of the project were kenyan. within disability inclusive development and development more broadly, we (i.e. the authors) view the equitable involvement of actors based within contexts and with experiences of the identities (e.g. disability) under study as crucial to the meaningful implementation and assessment of interventions, although there is a natural debate about what equitable participation would constitute to different actors. in relation, the second point we wish to highlight is our (i.e. the authors) identities. we are a group of three women and two men, and one of us identifies as having a physical disability. one of us is kenyan and worked on the intervention implementation and assessment in the lakes region, whilst the remaining authors are academics from the global north (the uk, the usa and italy) who work at a research centre formed through a partnership between the implementing ngo and a university. three of us have over 20 years’ experience of disability inclusive development, whilst the remaining two are more early-career. we anticipate (and indeed optimistic) that these mix of identities mean that we have contributed useful perspectives to the key debates raised by our findings, but this is obviously up to individual readers to decide. ethical consideration ethical approval to conduct secondary data analysis of the data collected throughout the project was granted by university college london (ethical clearance no.: id: 1661/005). additionally, at both time 1 and time 2, the external evaluator provided a declaration to the ngo (leonard cheshire) that the data were collected in an ethical manner, following the protocols set out by the funder. results table 1 shows the mean values (m) and standard deviation (sd) of uwezo test scores. findings are presented in two sections. firstly, we check for the impact of panel attrition on our sample. secondly, addressing our main objective, we assess the unique contribution of the inclusive education intervention to the uwezo scores of girls using longitudinal regression models. table 1: mean values and standard deviations of uwezo test scores. panel attrition differences between the participants who responded at time 2 and the full time 1 data set were checked separately for each group. for the intervention group, differences were non-significant across all key measures (range: p = 0.061–0.777), bar difficulty in seeing. respondents had more difficulty in seeing (m = 1.72, sd = 0.81) compared to non-respondents (m = 1.50, sd = 0.71), f (1, 404) = 6.98, p = 0.009, partial η2 = 0.017. for the control group, attrition produced three significant differences on key measures. firstly, respondents had less difficulty in remembering or concentrating (m = 1.66, sd = 0.89) compared with non-respondents (m = 2.02, sd = 1.00), f (1, 106) = 3.97, p = 0.049, partial η2 = 0.036, and less difficulty with self-care (m = 1.16, sd = 0.37) compared with non-respondents (m = 1.41, sd = 0.66), f (1, 106) = 6.53, p = 0.012, partial η2 = 0.058. finally, respondents had significantly higher english uwezo scores (m = 3.41, sd = 1.34), compared with non-respondents (m = 2.82, sd = 1.60), f (1, 106) = 4.27, p = 0.041, partial η2 = 0.039. as the majority of non-respondents at time 2 were girls who had dropped out of school, these differences were not surprising. that is, girls experiencing more functional difficulty (i.e. disability) than their peers were often at more risk of dropping out of school (mizunoya et al. 2018), hence the need to conduct interventions. impact of the inclusive education intervention on learning scores to assess the impact of the inclusive education intervention on the learning scores of girls with disabilities, we ran three longitudinal regression models. each model regressed the change in a learning score over time (i.e. time 2 – time 1 english, kiswahili or numeracy) onto groups (intervention and control). additionally, we also controlled for the influence of grade and the level of functional difficulty the girls experienced across each washington group domain (seeing, hearing, walking, remembering and self-care). the model regressing the change in english learning scores on the predictors explained a small amount of variance (r2= 0.06), f (7, 345) = 3.31, p = 0.002. as hypothesised, there was a significant and positive association between group and the change in english learning scores over time (b = 0.49, β = 0.17, t = 2.95, p = 0.003). that is, compared with the control group, the intervention group experienced a greater increase in english scores. the only other significant predictor of the change in english learning scores was grade (b = -0.10, β = -0.19, t = -3.63, p < 0.001). specifically, the higher the grade of the participant, the less their english learning score changed over time. no other predictors were significant in the model (range: p = 0.109–0.891). the model regressing the change in kiswahili learning scores on the predictors explained a small amount of variance (r2 = 0.08), f (7, 345) = 4.54, p < 0.001. as predicted, there was a significant and positive association between group and the change in kiswahili learning scores over time (b = 0.41, β = 0.12, t = 2.20, p = 0.029). in other words, compared with the control group, the intervention group experienced a greater increase in kiswahili scores. the only other significant predictor of the change in kiswahili learning scores was grade (b = -0.14, β = -0.24, t = -4.55, p < 0.001). specifically, the higher the grade of the participant, the less their kiswahili learning score changed over time. no other predictors were significant in the model (range: p = 0.150–0.477). the model regressing the change in numeracy learning scores on the predictors explained a small amount of variance (r2 = 0.06), f (7, 345) = 3.30, p = 0.002. as hypothesised, there was a significant and positive association between group and the change in numeracy learning scores over time (b = 0.48, β = 0.14, t = 2.40, p = 0.017). namely, compared with the control group, the intervention group experienced a greater increase in numeracy scores. there were two other significant predictors of the change in numeracy learning scores, grade (b = -0.09, β = -0.15, t = -2.74, p = 0.007) and difficulty in walking (b = 0.34, β = 0.16, t =2.78, p = 0.006). specifically, the higher the grade of participants, the less their numeracy learning score changed over time, whilst the more the difficulty participants had in walking, the more their numeracy learning score changed over time. no other predictors were significant in the model (range: p = 0.126–0.846). discussion our findings reveal that, over the intervention period, girls with disabilities who participated in the inclusive education intervention obtained significantly higher english, kiswahili and numeracy test scores compared with a comparable group of girls with disabilities who did not participate in the intervention. moreover, the longitudinal association between group and uwezo test scores was present when controlling for severity of disability and primary school grade. this suggests that the intervention was effective for both girls who experienced different degrees of impairment and girls who were at different stages of primary school learning. the evidence generated by this study suggests that a holistic inclusive education model (organisation 2017), encompassing intervention activities within both schools and wider community, could benefit the learning outcomes of children with disabilities. it is also encouraging that the intervention was effective when tested in the field among girls with disabilities from a resource-poor region of a lmic, as the literature has identified that both gender and poverty intersects with disability to create additional barriers in multiple areas of social participation, including education (e.g. emmett & alant 2006). findings from inclusive education interventions delivered by ngos, particularly when theory-led, are a useful step to explore ‘what works’ in practice, especially given that the implementation of inclusive education interventions by other actors could be constrained by a lack of resources (e.g. donohue & bornman 2015; kuyini & desai 2007). from this study, two observations for the future research are relevant in this respect. firstly, the intervention conducted by (organisation) was holistic, containing six interlinked core components comprising a range of related activities (see organisation 2017). the future research should also examine the unique impact of each component (e.g. comparing the impact of hours of input per component on learning outcomes) to clarify what contributes the most to improvement in learning outcomes and thus what could be prioritised in situations where resources to implement full inclusive education models are unavailable. secondly, it is worth highlighting that despite the scale and range of activities conducted as part of the intervention, the intervention explained only 6% – 8% of the variability in learning outcomes. this highlights the difficulty of achieving inclusive education in practice, where educational attainment could be influenced by a range of factors that were not measured in this study. thus, the future research should continue to explore and test additional determinants of learning scores, although many are likely to be sociocultural and specific to the context under study (i.e. the lakes region). in conducting this study, we encountered some challenges that arose because of its field settings. specifically, it was initially planned to test the impact of the intervention over three time points, but after the baseline many of the girls were subsequently allocated to schools outside project areas, requiring re-sampling at the midline project phase (i.e. time 1). girls were not therefore allocated randomly to the intervention and control groups, and consequently, there was cross-group variation in their level of functional difficulty and grade composition, although these were controlled for in the analyses. similarly, as girls in the intervention group were already exposed to activities prior to time 1, the analyses reflect the impact of intervention over the assessed period (i.e. time 1 to time 2), not its overall impact on girls with disabilities. conclusion the findings shed light on the effectiveness of a holistic inclusive education intervention conducted in the field amongst a marginalised group of children with disabilities in kenya (i.e. girls with disabilities from the resource-poor lakes region). results suggest that the intervention engendered additional improvements in the learning outcomes of marginalised children with disabilities, providing both a promising avenue for government-led scale up in the lakes region and highlighting the application of ngo-led interventions to build evidence in settings where national implementation of true inclusive education models is constrained (e.g. by lack of resources). future research is needed to discern what elements of inclusive education implementation should be prioritised in such contexts. in this respect, we anticipate that our findings are helpful in stimulating further work in this area. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.c. conducted data analysis and wrote and revised the manuscript. the remaining authors assisted with interpreting the data and provided critically important intellectual content to the revised manuscript. funding information this research was funded by the department for international development (grant no.: 6627). data availability statement data sharing is not applicable to this article as no new data were created or 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c., laniyan, a. et al., 2016, ‘consigned to the margins: a call for global action to challenge intellectual disability stigma’, the lancet global health 4(5), e294–e295. https://doi.org/10.1016/s2214-109x(16)00060-7 sheldon, a., 2014, ‘women and disability’, in j. swain, s. french, c. barnes & c. thomas (eds.), disabling barriers: enabling environments, pp. 70–77, sage, london. united nations educational, scientific and cultural organization (unesco), 2017, education and disability, unesco, montreal. united nations, 2007, convention on the rights of persons with disabilities, united nations, new york. uwezo, 2009, uwezo! promoting learning in east africa, uwezo, nairobi. wapling, l., 2016, inclusive education and children with disabilities: quality education for all in low and middle income countries, cbm, cambridge. footnotes 1. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. 2. the control group sample reported in this article comprises part of a larger control sample not receiving the intervention which included responses from out of school girls. however, as these girls do not attend school, they do not constitute a meaningful comparison group (i.e. girls attending school but not receiving the intervention). 3. although not the main language spoken in the lakes region, which is luo, kiswahili is a national language and the main language of instruction within schools, along with english 4. at time 1, only the first five levels of numeracy were assessed. however, we obtained ceiling effects, that is, almost two-thirds (57%) of the entire surveyed cohort were judged to have competency in subtraction, two additional levels were added at time 2. 5. summary statistics of the external evaluation are displayed at: https://girlseducationchallenge.org/. they show that the intervention achieved 165% of its literacy target and 171% of its numeracy target over the same period as detailed in this article (i.e. midline to endline). abstract introduction research methods and design results discussion strength and limitations conclusion acknowledgements references about the author(s) modjadji m. leshabane department of optometry, college of health sciences, university of kwazulu-natal, durban, south africa nishanee rampersad department of optometry, college of health sciences, university of kwazulu-natal, durban, south africa khathutshelo p. mashige department of optometry, college of health sciences, university of kwazulu-natal, durban, south africa citation leshabane, m.m., rampersad, n. & mashige, k.p., 2025, ‘optometrists’ perceptions of vision impairment services in public hospitals of limpopo province’, african journal of disability 14(0), a1559. https://doi.org/10.4102/ajod.v14i0.1559 original research optometrists’ perceptions of vision impairment services in public hospitals of limpopo province modjadji m. leshabane, nishanee rampersad, khathutshelo p. mashige received: 18 aug. 2024; accepted: 03 feb. 2025; published: 03 june 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: vision impairment (vi) services aim to mitigate the effect of vi and provide opportunities for visually impaired individuals to actively participate in their daily activities. objectives: to determine optometrists’ perceptions regarding vi services in public hospitals within limpopo province, south africa. method: a descriptive, quantitative, cross-sectional study was conducted between january and august 2023 across 37 public hospitals, using a structured questionnaire. data obtained from the participants’ responses were analysed to describe the level of vi services. results: the study sample included 65 optometrists with 71% female, yielding a response rate of 83%. over 90% of the participants were aware of the world health organization definition of vi. the majority of participants (54%) reported referring patients with vi to a hospital multidisciplinary team, while less than 50% provided optimal spectacle correction. the main barriers to providing vi services were: the lack of assistive devices (97%), and equipment (95%), poor access (80%), insufficient space (66%), and the lack of training (66%). the primary barriers to the uptake of vi services were the lack of awareness (86%) and the cost of vi services (80%). conclusion: the provision of vi services in limpopo province is currently limited. the factors contributing to the limited vi services are avoidable; therefore, efforts to enhance the availability of equipment, access and provision of comprehensive vi services are crucial to improving the quality of life for affected individuals utilising public hospitals in limpopo province. contribution: the study describes the optometrists’ perceptions of vi services in public hospitals. keywords: vision impairment; vision impairment services; rehabilitation; assistive devices; low vision; blindness. introduction vision impairment (vi) is defined as a functional limitation of the eye/s or visual system because of a disorder, which can result in visual disability or visual handicap (heath, kishiki & courtright 2007; world health organization [who] 2019a). vision impairment includes low vision (visual acuity [va] less than 6/18 to 3/60) and blindness (va worse than 3/60 to light perception) based on presenting va (who 2022). vision impairment can manifest as reduced va or contrast sensitivity, visual field loss, photophobia, colour vision loss, diplopia, visual distortion, visual perceptual difficulties or any combination of the abovementioned symptoms (heath et al. 2007). an individual with functional low vision has impairment of visual functioning even after treatment and/or standard refractive correction, with va less than 6/18 to light perception or visual field less than 10 degree from the point of fixation, but uses or is potentially able to use vision for the planning and/or execution of a task (who 2008). globally, approximately 295 million individuals have moderate to severe vi, 43 million are blind and 510 have near vi (bourne et al. 2021a). furthermore, about 90% of the visually impaired individuals live in lowand middle-income countries (lmics) (ackland, resnikoff & bourne 2017; bourne et al. 2021a). in south africa, vi accounted for 9.9% among all disabilities, making it the largest disability group in the country (statistics south africa 2024). the main global causes of vi include uncorrected refractive errors (ures), cataracts, diabetic retinopathy and age-related macular degeneration (who 2021). in south africa, a recent study identified ures, cataracts and glaucoma as the most common causes of vi (xulu-kasaba & kalinda 2022). vision impairment restricts affected individuals from attaining optimum function and independence in their daily lives, leading to decreased quality of life and contributing to poor psycho-social well-being, physical health, economic participation and educational achievements (bassey, ellison & walker 2019; bourne et al. 2021a; watermeyer, et al. 2024; who 2021). to improve their daily functioning, individuals with vi require comprehensive vi services encompassing promotional, preventative, treatment and/or rehabilitation services. people with irreversible vi (congenital or acquired) require low vision care and rehabilitation services (who 2019a). several studies have shown that comprehensive vi services are effective in improving functioning for activities of daily living (adl) and psychological well-being in affected individuals (da silva et al. 2014; mcknight, crudden & mcdonnall 2021; ovenseri-ogbomo et al. 2016). low vision care and rehabilitation services include vision assessment and goal identification, refraction, provision of assistive devices and training on their use, psychological counselling on the underlying condition, adaptation and use of residual vision, mobility and orientation training, occupational rehabilitation and environmental modification, referral to special education and job placement services (monye, kyari & momoh 2020; owsley et al. 2009; who 2019a). the services require a professional multidisciplinary approach which involves personnel including optometrists, ophthalmologists, ophthalmic nurses, occupational therapists, orientation and mobility trainers, psychologists, community–based rehabilitation workers, audiologists, social workers, special educators, physiotherapists and low vision therapists to ensure comprehensive rehabilitation services (heath et al. 2007; oduntan 2008; who 2017). optometry is defined as a profession concerned with the eyes and related structures, as well as vision, visual systems and vision information processing in humans (bergin 2017). optometrists are licensed or registered primary healthcare practitioners of the eye and visual system who provide comprehensive eye and vision care, which includes refraction and dispensing, detecting and/or diagnosis and management of eye disease and the rehabilitation of the condition of the visual system (health professional council of south africa [hpcsa] 2025; world council of optometrists 2025). given the scope of practice of optometrists, they possess the requisite skills and expertise to deliver services related to vi (naidoo et al. 2023). globally, the demand for vi services is projected to rise because of the ageing population, prevailing lifestyle comorbidities and complications arising from non-communicable systemic and/or ocular diseases (bourne et al. 2021a; who 2017). the who action plan prioritises reducing avoidable vi as a global public health issue and ensuring access to rehabilitation services for individuals with irreversible vi. this empowerment aims to enable full participation in social, economic, political and cultural aspects of life (who 2013). despite these efforts, significant inequalities and gaps persist in the awareness, access and uptake of vi services worldwide. approximately 5% of the population with chronic vi has access to low vision care and rehabilitation services worldwide (chiang et al. 2011). in most instances, lmics are underserved or the services are inadequate and generally poor (bourne et al. 2021b; who 2017, 2021). in south africa, provision of low vision and rehabilitation services is variable, inadequate and gravely constrained in most rural parts of the country (oduntan 2007; sacharowitz 2005; watermeyer et al. 2024). the low vision care and rehabilitation services are mainly offered by the four optometric teaching institutions, one college, few public special schools, several non-profit organisations (npos) and few private practice optometrists (oduntan 2007; sacharowitz 2005). barriers to the provision, access and uptake of vi services are multifaceted, involving healthcare system constraints, individual factors, societal issues; and they vary across and within countries (bourne et al. 2021a, 2021b; chiang et al. 2011; wallace et al. 2020). the limpopo province is the fifth most populous province in south africa, with a predominantly rural landscape (limpopo provincial government 2020; statistics south africa 2019). while numerous studies have examined the epidemiology of vi in various parts of limpopo province (maake & oduntan 2015; mabaso & oduntan 2014; oduntan et al. 2003), there is a notable paucity of literature addressing the awareness, availability and barriers to accessing vi services in the public hospitals of limpopo province. this study aimed to elucidate the perceptions of optometrists regarding vi services in the public hospitals of limpopo province. the findings are anticipated to be instrumental for policymakers, eye care personnel and the department of health in facilitating informed planning, resource allocation and management of vi, ultimately enhancing the quality of life of affected individuals and their families. research methods and design study design the study used a descriptive, quantitative, cross-sectional design to explore optometrists’ perceptions of vi services in the public hospitals of limpopo province. study site and population the study was conducted in public hospitals providing optometry services in limpopo province, south africa. during the study period (january–september 2023), 37 public hospitals employing 81 optometrists who offered eye care services in the province. the optometry services offered across these hospitals were relatively homogeneous concerning patient assessment, diagnosis and disease management. sampling strategy convenience sampling was used to recruit participants from all public hospitals within the province. a total of 81 optometrists employed in public hospitals were recruited to participate in the study. three of these optometrists participated in the pilot study. consequently, a saturated sample of the remaining 78 optometrists was included in the study. the questionnaire was distributed electronically to these 78 optometrists, and 65 optometrists completed and returned the questionnaire. data collection a modified, validated structured questionnaire was used for data collection. the design of the questionnaire was informed by a comprehensive review of previous literature (jose et al. 2016; kyeremeh & mashige 2018). a pilot study was conducted with three optometrists, not included in the main sample, and two academic optometrists to evaluate content validity, suitability of the questionnaire and the data collection procedures. based on feedback from the pilot study, five questions were deleted and four were rephrased to reduce ambiguity. the results from the pilot study were excluded from the final data analysis. the final questionnaire comprised 36 close-ended questions divided into five sections: demographic information, awareness, availability, barriers to the provision and uptake of vi services. the questionnaire was disseminated to participants via google forms. the google form also included the study information, and participants provided consent to participate in the study before accessing the questionnaire. to enhance the response rate, the researcher sent a follow-up email 2 weeks after the initial distribution, and made calls to participants 1 week later to remind them of the study and the completion of the questionnaire. this approach was deemed necessary to maximise the response rate, as surveys are typically constrained by low response rates (agustini 2018; fincham 2008). data analysis data were collected electronically and analysed using the statistical package for social sciences (spss) version 29 (ibm, chicago, illinois, united states). the numerical and categorical data responses to the questions were analysed using descriptive statistics to determine frequencies. the chi-square test was used to compare awareness, availability and barriers to the provision of vi services based on participants’ years of work experience. a p-value < 0.05 was considered statistically significant. ethical considerations approval to conduct the study was obtained from the humanities and social science research ethics committee (hssrec/00004472/2022) of the university of kwazulu-natal. thereafter, gatekeeper permission and approval were obtained from the limpopo provincial department of health (lp_2022-12-004). anonymity was ensured by providing all participants with individual codes. results demographic characteristics a total of 65 optometrists from 37 public hospitals completed the questionnaire, yielding a response rate of 83%. table 1 presents the demographic information of participants. the sample predominantly comprised females (n = 46, 71%) and nearly all participants (n = 64, 98%) had a bachelor of optometry qualification. the majority of participants had 11 or more years of working experience (n = 40, 62%) and were employed at primary-level hospitals (n = 43, 66%). all participants were involved in providing general eye care services, whereas a limited number of participants (n ≤ 6) provided orthoptic vision, contact lens or low vision care services. a small number of participants (n = 6, 9%) reported offering low vision care services. in addition, low vision care was identified as an area of interest for approximately 30% of the sample. table 1: demographic information of the participants (n = 65). awareness of vision impairment the average number of patients with vi examined per month ranged from 20 to 300 with a mean (standard deviation) of 106.92 (± 91.223). table 2 illustrates participants’ awareness of vi stratified based on years of working experience. while over 90% of the sample were aware of the who definition of vi, only 50% of the participants used the who criteria to classify a person with vi. there was an almost equal distribution of participants who classified a person with vi based on poor vision in both eyes (n = 16, 25%), and those who based it on patient needs (n = 15, 23%). table 2: awareness of vision impairment services based on years of working experience (n = 65). in terms of classifying vi to include individuals who might benefit on vision rehabilitation services, the majority of participants classified the person with low vision when the va in the better eye was worse than 6/18 but equal to or better than 3/60 (n = 43, 66%). fewer than 50% of all participants classified a person with low vision when the visual field (vf) was worse than 20o from the point of fixation. participants with more than 11 years of working experience (78%) had a high percentage of classifying a person with low vision when the va in the better eye was worse than 6/18 but equal to or better than 3/60, compared with those with less than 10 years of working experience (48%). less than 30% (n = 15) of the participants classified a person with blindness when the va in the better eye was worse than 3/60 to no light perception. in contrast, more than 70% of the participants classified a person with blindness when the vf was worse than 10o from the point of fixation. irrespective of years of working experience, 25% or less participants classified an individual with blindness when the va in the better eye was worse than 3/60. the majority of participants identified vision rehabilitation as encompassing training on the use of low vision devices (82%), training for mobility and orientation (77%), counselling (60%) and adaptive training for employment (49%). there was no association between participants’ years of working experience and their awareness of the who definition of vi, criteria to classify a person with vi, low vision and blindness based on the vf from the point of fixation and participants’ awareness of vision rehabilitation services (p > 0.05). however, an association was found between participants’ years of working experience and classifying an individual with low vision when the va in the better eye was worse than 6/18 and blindness when the va in the better eye was worse than 3/60 (p < 0.05). availability of vision impairment services table 3 presents the participants’ responses regarding the availability of vi services in their local areas as stratified based on their years of working experience. the majority of participants (54%) reported referring patients with vi to a hospital multi-disciplinary team. less than 50% of participants provided optimal spectacle correction, some form of vision rehabilitation services or referred patients to low vision care centres. most participants engaged with ophthalmologists (92%), psychologists (78%) and occupational therapists (71%) when providing vi services. nearly 50% of the participants indicated the absence of a referral centre for irreversible vi services in their districts. only eight participants frequently referred patients with irreversible vi to the centre for vision rehabilitation services, while the majority (n = 57, 88%) either never or rarely referred patients. table 3: availability of vision impairment services based on years of working experience (n = 65). the lack of a referral procedure (95%) was identified as a major barrier to referring patients to these centres. no statistically significant association was found between participants’ years of working experience and collaboration with other health care professionals in managing patients with vi, the type of service provided to patients with vi, the referral of patients to centres offering vision rehabilitation care services or the challenges encountered in referring patients to such centres (p > 0.05). barriers to the provision and uptake of vision impairment services figure 1 to figure 3 illustrate barriers in the provision of vi services within the health care system, barriers faced by practitioners and barriers encountered by patients in accessing vi services, respectively. in terms of barriers inherent within the health care system, the primary obstacles identified included the lack of assistive devices (97%), the lack of equipment (95%), the lack of access (80%) and insufficient space (66%) (figure 1). although 55% of participants expressed interest in providing vi services (figure 2), more than 60% of participants reported a lack of training and awareness while only 35% of participants reported increased workload as barriers faced by practitioners in the provision of vi services. despite perceiving vi services as effective (65%), participants reported the lack of awareness (86%), and the cost of vi services (80%) as main barriers to their uptake of these services in the province (figure 3). figure 1: barriers for vision impairment services inherent in the health care system. figure 2: barriers for practitioners in providing vision impairment services. figure 3: barriers for the uptake of vision impairment services. discussion vision impairment interferes with developmental growth in children and significantly impacts the quality of life among the adult population (bassey et al. 2019; bourne et al. 2021a; who 2021). the demand for vi services is anticipated to increase globally because of ageing population and prevailing lifestyle comorbidities (bourne et al. 2021a; who 2021). this study aimed to describe optometrists’ perceptions of vi services in public hospitals in the limpopo province, south africa. the findings from this study on awareness of vi showed that 90% of the participants were aware of the who definition of vi. however, only 50% of the participants applied the who criteria to identify and classify individuals with vi. this discrepancy in vi classifications may stem from the lack of standardised guidelines for vi classifications or the absence of necessary enablers for implementation, such as diagnostic equipment in public hospitals. interestingly, the majority of those who adhered and used the who criteria in classifying an individual as having vi were those with 10 years or less of working experience (68%). this trend may be attributed to their greater involvement in patient care and a higher likelihood of engaging in continuous education and skill development than their more experienced counterparts. inconsistencies in the classification of vi contribute to inaccurate estimations of the number of individuals who could benefit from vi services, including refractive error correction, cataract surgery, low vision care and taking into account the person’s vision-related problems and needs, and vision rehabilitation (dijk, kishiki & courtright 2014). this misclassification may therefore lead to affected individuals being denied access to essential services as accurate estimates of vi are crucial for planning effective eye care services and monitoring progress (who 2019a). the use of the international classification of diseases (icd) for classifying vi, as recommended by the who, is commonly employed in clinical settings and research studies (ali et al. 2022; bourne et al. 2021b; seid et al. 2022; who 2019b). vision impairment services aim to optimise the use of residual vision through the use of assistive devices, medical and surgical interventions, psychological counselling and environmental adaptations (who 2019a). early reports indicated that the main causes of vi in parts of limpopo province were correctable and/or preventable (maake & oduntan 2015; mabaso & oduntan 2014; magakwe, xulu-kasaba & hansraj 2020; oduntan et al. 2003). however, findings from this study revealed that only 9% of the participants offered low vision care services, less than 50% of participants provided optimal spectacle correction and approximately 54% referred patients with vi to ophthalmologists, psychologists or occupational therapists. only eight participants (12%) frequently referred patients for vision rehabilitation services, while the majority (88%) either never or rarely made such referrals. despite that refractive error correction services are cost-effective and feasible to implement (who 2021), poor provision of spectacles and other visual assistive devices might be because of anecdotal reports suggesting insufficient budget for optical devices and poor procurement processes at public hospitals in limpopo province. while similar findings of inadequate refractive error coverage services were reported in saudi arabia (ovenseri-ogbomo & alghamdi 2021) and zambia (kapatamoyo et al. 2023), the budget and procurement constraints could further worsen the provision and access to low vision care at public hospitals because of the expensive costs of these services, thus leaving the majority of the people who rely on public eye health care services underserved. almost all hospitals in limpopo province had a significant cataract backlog and only three public hospitals were offering cataract surgery services at the time of study. an early study in parts of limpopo province found that patients were placed on the cataract surgery waiting lists for longer periods (khoza et al. 2020a). it was found that insufficient ophthalmology personnel, shortage of equipment and consumables for cataract surgery services contributed to limited provision of cataract surgery services in the province (khoza et al. 2020a, 2020b). the increase in referrals of patients with vi to the ophthalmologists could be reduced by strengthening the co-management of eye diseases between the optometrists with ocular therapeutics privileges and ophthalmologists. naidoo et al. (2023) showed that optometrists are best placed to contribute to the disease control strategy to reduce the global burden of vi. the lack of a vision rehabilitation plan and inadequate referrals of those who might benefit from the low vision care and rehabilitation services could be because of the lack of referral guidelines and insufficient vision rehabilitation centres in the province. consistent with other studies, low vision care and rehabilitation services were reported to be more constrained in lmics (oduntan 2007; who 2017, 2021). participants identified the lack of assistive devices, equipment and access as major barriers inherent within the health care system in the provision of vi services. assistive devices, both optical and non-optical, can restore vision and/or enhance functionality of individuals with vi, thus their provision significantly impacts the vision-related quality of life (da silva et al. 2014; ovenseri-ogbomo et al. 2016). however, similar findings were reported in other studies (javed, afghani & zafar 2015; kapatamoyo et al. 2023; kyeremeh & mashige 2021; lim et al. 2014; monye et al. 2020; wallace et al. 2020), where the lack of equipment, access and assistive devices were cited as primary barriers to provision of vi services. the absence of adequate equipment adversely affects the quality of services offered, leading to inadequate diagnosis, inappropriate referrals and redundant skills with overburdening of the receiving institutions. while 55% of participants expressed interest in providing vi services and 29% provided low vision care and rehabilitation services, barriers such as inadequate human resource and training, limited awareness and increased workload were identified as significant obstacles for practitioners in delivering these services. the inadequate human resource which might be the reason for increased workload could be because of shortage of optometrists in some hospitals as majority of optometrists are predominantly located in the private sector (naidoo et al. 2023). this could be the contributing factor for poor integration of low vision care and rehabilitation services in the public sector as optometrists may mainly focus on providing refractive services and screening for diseases (naidoo et al. 2023). the lack of awareness among practitioners may be attributed to insufficient involvement in continuous professional education and low interest in professional skill development. this deficiency in awareness has been reported as a major barrier to effective vi services (dilkash et al. 2021; jose et al. 2016). furthermore, inadequate training leads to incompetent practitioners and ineffective service delivery. continuous educational training is important to ensure that practitioners maintain up-to-date skills and developments in their fields and adherence to such training is mandatory (hpcsa 2021). these limitations and inadequacies deprive persons with vi to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life and could infringe on their rights and well-being (department of social development 2016; united nations 2025). participants identified the primary barriers to the uptake of vi services as a lack of awareness and the cost of services. the lack of awareness may be attributed to the literacy levels of the population being served and poor eye-care-seeking behaviours (who 2021). a deficiency in awareness and knowledge about available services negatively impacts the utilisation of these services (akuffo et al. 2020; ntsoane et al. 2012). although public health services in south africa are subsidised, individuals who are not fully subsidised may still be unable to afford their portion of the hospital bill because of their socio-economic status (bourne et al. 2021a; limpopo provincial government 2020). furthermore, inadequate coverage for refractive error correction and cataract surgery in the province may contribute to the ineffectiveness of services, resulting in a lack of patient satisfaction because of unmet expectations. strength and limitations the limitations of this study include its hospital-based design, which is subject to the inherent constraints of facility-based studies, such as limited generalisability of the findings. in addition, the study is susceptible to information bias because of the selection of participants being limited to optometrists. despite these limitations, the study offers valuable insights for policymakers, and eye care practitioners, aiding in the effective planning of visual impairment services and serving as a foundation for further research. conclusion the availability and provision of vi services in limpopo province are currently limited. advocacy for the use of recommended guidelines is essential to ensure the delivery of quality eye care services. it is necessary to enhance the availability of equipment, improve awareness of vi services, develop and ensure implementation of guidelines for referral to improve access and provision of effective vi services. the factors contributing to the limited vi services are avoidable. therefore, appropriate planning on provision of comprehensive vi services and resource allocation are necessary to reduce the burden of vi and ultimately improve the quality of life of affected individuals utilising the public hospitals in limpopo province. acknowledgements this article is partially based on m.m.l.’s thesis entitled ‘the development of a vision impairment model of care in public hospitals of limpopo province’ towards the degree of doctor of philosophy in optometry at the college of health sciences, university of kwazulu-natal, with supervisor prof k.g. mashige and dr. n rampersad. competing interests the authors reported that they received funding from the university of kwazulu-natal’s college of health sciences scholarship which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions m.m.l., n.r. and k.p.m. conceptualised the project and the design. m.m.l. wrote the original draft. n.r. and k.p.m. supervised the project, guided and reviewed and edited all drafts up to the final article. funding information the university of kwazulu-natal’s college of health sciences scholarship funded the field work. data availability the data that support the findings of this study are available from the corresponding author, m.m.l., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily 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https://icd.who.int/browse10/2019/en#/h54. world health organization (who), 2021, blindness and vision impairment, viewed 13 may 2024, from https://www.who.int/news-room/fact-sheets/detail/blindness-and-visual-impairment. world health organization (who), 2022, icd-11 for mortality and morbidity statistics, viewed 28 march 2022, from https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health. xulu-kasaba, z.n. & kalinda, c., 2022, ‘prevalence of the burden of diseases causing visual impairment and blindness in south africa in the period 2010–2020: a systematic scoping review and meta-analysis’, tropical medicine and infectious disease 7(2), 34. https://doi.org/10.3390/tropicalmed7020034 article information authors: arne h. eide1 benedicte ingstad2 affiliations: 1sintef technology and society, oslo, norway 2department of community medicine, university of oslo, norway correspondence to: arne eide postal address: sintef technology and society, pb 124 blindern, n-0314 oslo, norway dates: received: 22 apr. 2012 accepted: 19 june 2013 published: 13 aug. 2013 how to cite this article: eide, a.h. & ingstad, b., 2013, ‘disability and poverty – reflections on research experiences in africa and beyond’, african journal of disability 2(1), art. #31, 7 pages. http://dx.doi.org/10.4102/ ajod.v2i1.31 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. disability and poverty – reflections on research experiences in africa and beyond in this original research... open access • abstract • introduction • the survey approach to disability and poverty    • the sintef southern africa survey    • the world health survey    • comparing the surveys • qualitative studies on disability and poverty • further reflections • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: whilst broadly agreed in the literature that disability and poverty are closely interlinked, the empirical basis for this knowledge is relatively weak.objectives: to describe and discuss the current state of knowledge and to suggest the need for further generation of knowledge on disability and poverty. method: two recent attempts at statistically analysing the situation for disabled people and a series of qualitative studies on disability and poverty are applied in a discussion on the state of current knowledge. results: firstly, the surveys confirm substantial gaps in access to services, and a systematic pattern of lower levels of living amongst individuals with disability as compared to non-disabled. existing surveys are however not originally set up to study the disability – poverty relationship and thus have some important limitations. secondly, the qualitative studies have shown the relevance of cultural, political and structural phenomena in relation to poverty and disability, but also the complexity and the contextual character of these forces that may sometimes provide or create opportunities either at the individual or the collective level. whilst not establishing evidence as such, the qualitative studies contribute to illustrating some of the mechanisms that bring individuals with disability into poverty and keep them there. conclusions: a longitudinal design including both quantitative and qualitative methods and based on the current conceptual understanding of both disability and poverty is suggested to pursue further knowledge generation on the relationship between disability and poverty. introduction top ↑ it is widely accepted amongst activists, researchers and others that disability and poverty are ‘dynamic and intricately linked phenomena’ (mitra, posarac & vick 2011:1). a rationale for the relationship has been established, with the article by yeo and moore (2003) being a key source of reference. disability leads to poverty through a number of exclusion processes, whilst poverty is a threat to daily life activities, social participation and health, and consequently creates disabling conditions and disability. in his conceptual review of disability and poverty, palmer (2012) found strong links between poverty and disability regardless of the definition of poverty. even though research on the relationship is on the increase, it remains limited in low-income countries in particular. whilst the world disability report (who 2011) refers to a range of different studies across the world, there is a lack of good data to demonstrate to what extent individuals with disabilities are poorer in different contexts, the diversity amongst individuals with disability, and the mechanisms underlying the ‘vicious circle of disability and poverty’ as to how this plays out in different contexts (mitra et al. 2011; yeo & moore 2003:572). it is not necessarily the case, for instance, that the relationship between disability and poverty is the same, or for that matter has the same strength or relevance, in contexts where everyone is poor as compared to more socio-economically differentiated contexts. this article draws on some important experiences in research on disability and poverty in low-income contexts over the last 10 years, and uses these experiences to discuss the state of knowledge and to point towards further research needs. the conceptual development over the last 10–20 years has expanded the understanding of both disability and poverty. the international classification of functioning, disability and health (icf) (who 2001) in this regard represents an important milestone in combining a social and a medical model on disability and shifting the balance from bodily functioning to social participation as an outcome of the meeting between an individual and his or her context. this is confirmed through the united nations convention on the rights of disabled people (crpd) (un 2008) as well as the world report on disability (who 2011), putting disability clearly into a human rights perspective, which is directly relevant for poverty alleviation efforts. with regards to poverty, a multidimensional understanding emerged in the 1990s through a world bank study by narayan (2000), and spicker (2007) later used the same study to argue for three different definitions of poverty: the basic needs approach, the capability approach, and the economic resources approach. an important, authoritative presentation in this regard was given by mr james d. wolfensohn, the former president of the world bank, in 2004, stating that: ‘even the understanding of poverty has broadened from a narrow focus on income and consumption to a multidimensional notion of education, health, social and political participation, personal security and freedom, environmental quality …’ (wolfensohn & bourguignon 2004:3) the millennium development goals (mdgs) are a unified set of development goals to address the needs of the world’s poorest (un 2000). whilst the mdgs have been heavily criticised for not including disabled people, an increasing recognition of the need for particularly targeting people with disability in poverty alleviation has been demonstrated during recent years, including un efforts to implement a reporting and monitoring system for disability and the mdgs (un 2009, 2011) and the high-level meeting on disability and development during the 67th session of the un general assembly in 2012. the monitoring report treats the disability-poverty relationship explicitly and refers to a ‘feedback loop’ with ‘disability being both a cause and a consequence of poverty’ (un 2011:7). the increasing recognition of disability as a development issue and as a key element in reaching the mdgs indicates a positive albeit overdue development. the lack of research on disability and poverty may be partly explained by the fact that both disability and poverty are contested concepts that have undergone important development over the last 10–20 years. disability, for instance, is referred to as ‘an evolving concept’ in the crpd (un 2008: preamble, point d), and the field of poverty clearly has competing definitions. the situation also reflects the general lack of disability research in poor countries, however, and it may be taken as evidence for the challenges of mainstreaming disability in development. there is limited evidence for the specific manifestations of differences in life conditions between disabled and non-disabled with regards to poverty components, and there are large gaps with regards to how disability leads to poverty and vice versa. disability statistics, which are potentially powerful both in demonstrating differences and in analysing mechanisms for the relationship between poverty and disability, are far from robust or comparable globally (eide & loeb 2006). whilst important progress has been made with regards to design development and standardisation of disability measures, in particular through the work by the washington group on disability statistics (madans, loeb & altman 2011), there are still substantial challenges in research on disability and poverty. this article will explain and discuss first the contributions of two recent attempts at statistically analysing the situation for disabled people and thereafter a series of qualitative studies on disability and poverty. the purpose is not to do a comprehensive literature review on the subject matter, but rather to apply these recent research contributions to a discussion on the direction and content of research on disability and poverty. the survey approach to disability and poverty top ↑ the sintef southern africa survey between 2002 and 2012, the foundation for scientific and technological research (sintef) carried out national, representative studies on living conditions amongst people with disabilities in collaboration with the southern africa federation of the disabled (safod), the norwegian federation of organisations of the disabled (ffo), national universities, national affiliates of safod, central statistical offices, relevant ministries and other key stakeholders in seven countries in the southern african region (eide & jele 2011; eide & kamaleri 2009; eide & loeb 2006; eide et al. 2003; eide, van rooy & loeb 2003; kamaleri & eide 2010; loeb & eide 2004;). all studies are cross-sectional, based on the respective national sampling frames, and a representative sample was ensured through collaboration with the central statistical office in each country. small geographical units (enumeration areas) across each country were sampled, and a full listing of all households and individuals within the sampled areas was carried out, including application of the washington group on disability statistics’ six screening questions (madans et al. 2011). the team of interviewers later re-visited the households with at least one disabled member and interviewed the head of the household and the individual with a disability. in the later studies, a control sample was included, largely by interviewing the head of the household and another matched household member. the questionnaires applied in these surveys were based on previous studies carried out in the region on the level of living and on poverty, and a comprehensive process involving a range of stakeholders and in particular people with disabilities and their organisations. these studies have together established a unique regional database and a baseline with comprehensive statistical information on the situation amongst individuals with disability and households with disabled members. the later studies with a control sample reveal a largely consistent pattern of differences between individuals and households with and without disability, in rural as well as in urban areas. all studies demonstrate substantial gaps in services, for instance, assistive technology, with nearly half of those who need a device not having access to one. key indicators on education, mental and physical health, employment, socio-economic status, access to information, social participation, et cetera all point in the same direction: there are substantial gaps in services to disabled people, disability is associated with a lower level of living when compared to non-disabled persons, women with disabilities are worse off than males, and the rural disabled have a lower level of living than their urban counterparts. although most of the differences are ‘real’ in a statistical sense, many differences are not very dramatic, however, and there is substantial variation between countries. it may be concluded from these studies, however, that disability is clearly associated with lower levels of living in these poor contexts, but also that we need to revisit the over-simplification inherent in the ‘disability-poverty’ axiom. reality is, not surprisingly, much more complex, and there are clearly other factors than disability influencing this link. the world health survey another recent statistical analysis on disability and poverty is the work carried out by mitra, posarac and vick (2011), utilising data from the world health survey (whs) carried out by the world health organization in 2002–2004. the authors aimed at ‘presenting a snapshot of economic and poverty situation of working-age persons with disabilities and their households in 15 developing countries‘ (mitra et al. 2011:1). of the countries involved in this study, seven were african, four asian, and four latin american. the whs was a cross-sectional survey and was implemented in 70 developed and developing countries, with the primary objective being to collect comparable health data across countries. it used a common survey instrument in nationally representative populations with different modules to assess the health of individuals in various domains, health system responsiveness, and household expenditures on health care and living conditions. in all the countries included in the study by mitra et al. (2011), the whs followed a stratified sample design with weighting. for each household, one informant responded to a household questionnaire including questions on household expenditure, living conditions, assets and household demographics (size and number of children). in addition, within each household, an individual respondent of 18 years or older was selected randomly. that person then responded to an individual-level questionnaire, including questions about his/her own demographic characteristics, disability and health, employment, and education. the main message from the study is that disability is significantly associated with multi-dimensional poverty in 11 to 14 of the 15 developing countries included in the analyses: ‘in other words, persons with disabilities are more likely to experience multiple deprivations than persons without disabilities in most countries. this result holds when different multidimensional poverty measures and poverty thresholds are used.‘ (mitra et al. 2011:iv) comparing the surveys the two studies described here are both unique examples of comprehensive and comparable data across countries, and they are amongst the best quality disability statistics from low-income countries. whilst the whs is a global survey, the living conditions studies are regional, and whilst the whs is relatively narrow with regards to indicators, the living conditions studies a broad range of phenomena that in principle covers all aspects of the icf. many aspects of the methodology, including the operationalisation of disability, are different between the two studies. in general though, the main messages are similar: (1) disability is associated with systematic lower scores on the selected indicators when comparing with non-disabled, (2) the association between disability and poverty may disguise a more complex relationship due to contextual differences and the heterogeneous character of the population of individuals with disability. an overall weakness with these studies and others that have been published is their inability to provide evidence beyond the systematic associations. this, of course, is due to the methodology and the cross-sectional design, and the fact that none of the studies were designed to test the disability–poverty relationship in the first place. these studies can demonstrate patterns of poverty and disability, they can analyse relationships between components of a model on disability and poverty, and they can also test more comprehensive models statistically – all important for building the knowledge on disability and poverty. however, they are not based on a model on disability and poverty and thus are not designed to test the disability–poverty relationship. in order to provide stronger evidence for this relationship, the design should be longitudinal and based on one or more relevant theoretical models. the complexity of the phenomena under discussion and problems in applying a classical experimental design further invite mixed methods. qualitative studies on disability and poverty top ↑ whilst different types of surveys may provide a basis for statistics on disability and poverty, qualitative studies may be useful for contributing to theory building, describing individuals’ interpretation and meaning as well as influencing survey design and the interpretation of results from surveys. although most studies that have dealt more or less directly with disability and poverty have centred on ways of producing statistical data, a series of relevant qualitative studies has recently been accomplished. disability and poverty by eide and ingstad (2011) comprises eight different qualitative studies and two policy analyses. ten different countries (and cultures) are represented amongst these chapters. they all aim at contributing to the discourse on disability and poverty in low income contexts. the 10 contributions represent an attempt at a culture-sensitive approach to disability, i.e. an understanding of individuals’ values and interpretations as well as the implications of cultural and structural forces on individuals. cultural values and meanings represent established patterns for understanding and reacting to a phenomenon. we can identify established and culturally rooted discriminatory practices that affect individuals with disabilities and their families, for instance, gender imbalance as described by ingstad, baider and grut (2011) in their study from yemen. segregation between men and women and male dominance play an important role in making girls and women with an impairment more disadvantaged than boys or men (ingstad et al. 2011:148). more than anyone else, poor girls with disability are bound by traditional family patterns and will easily be left isolated, uneducated and unmarried. paradoxically, as they may face exclusion from the dominant and desired female role, this also creates opportunities for a few girls who, due to a supportive family or other circumstances, may be able to get an education and live an active life because the traditional barriers set up by entering into married life do not apply to them. cultural patterns are not static, however, and not even homogenous in a society, and are influenced by collective understanding and practices and by structural and social factors (ingstad & whyte 1995). whilst poverty is largely the result of structural and often international or global forces, a situation of permanent poverty will affect social relations as well as attitudes and, over time, how cultural beliefs and thus also how individuals with disabilities are treated. as described by grut, olenja and ingstad (2011), discrimination against disabled people may easily be seen as a negative cultural practice, whilst another explanation may be that it is simply a forced reaction to poverty, largely a mechanism of survival or absence of options. hansen and sait (2011), on the other hand, describe a situation where collective efforts and solidarity contribute to change people’s understanding and thus challenge the political and structural levels in society. this contribution accentuates the potential for human beings even under dire conditions to be able to influence their own situation and challenge dominating forces through collective action. it counters a perspective on disabled people living in poverty as victims that are themselves to blame for discriminatory practices. it is possible that the ability to self-organise, or at least to act concertedly and to establish patterns of meanings that, in the case of south africa (hansen & sait 2011), react against social injustice, is a key ingredient that distinguishes between these two cultural contexts. the distinction between explaining discrimination and negligence of the needs of disabled people by culture rather than poverty has direct bearings on how researchers, policy makers and other groups external to the situation perceive possibilities for breaking the poverty-disability circle. emphasising culture may easily lead to inaction, as this is often regarded as a stable phenomenon or at least slowly changing over generations, and representing core values that need to be respected for ethical reasons. although influence, change and heterogeneity within nations and geographical areas today are seen as key aspects of culture, even in a globalised world, patterns of meaning and practices will still be understood as relatively stable or slowly evolving, and sometimes even reinforced as social reactions to external influence (friedman 1994). it is again an interesting paradox that intervention at the individual level, i.e. in practice easily implying ‘blaming the individual’, is a preferred level of explanation and action, whilst criticising and attempting to change cultural practice is seen as much more controversial and largely avoided. the structural level is another obvious level for explaining the persistent relationship between disability and poverty. muderedzi and ingstad (2011) describe and analyse how political and structural forces violating basic human rights in zimbabwe are a direct cause of persistent poverty, with dire consequences particularly for children with disability. one of the most promising theoretical approaches to analysing links between disability and poverty is the introduction of the concepts of ‘social suffering’ and ‘structural violence’ (farmer 2004; kleinman et al. 1997). social suffering is imposed on people by conditions outside their control, and can be political, economic, ecological and others. structural violence plays out where some social structure or social institution purportedly harms people by preventing them from meeting their basic needs, i.e. the violence of everyday life that causes social suffering. by seeing suffering as socially induced, the blame and guilt are placed on the outside forces rather than on the individuals and their families. reflecting on the consequences for disabled people of political and structural forces, it may be argued that without putting the needs of individuals with disabilities in the forefront, there is a high risk for maintaining the disability–poverty relationship even if this was not intentional and even in cases where the intention was to alleviate poverty. the voices of the poorest of the poor are easily sidelined, even when they are crucial in combating poverty (wolfensohn & bourguignon 2004). muyinda and whyte (2011) for instance demonstrate that the exclusion and/or marginalisation of disabled people in essential service development in uganda results in the needs of disabled people not being met, and consequently contributes to driving individuals and families further into permanent poverty. attributing the relationship between poverty and disability to social and structural forces underlines the relevance of the political level for breaking the disability-poverty circle. as demonstrated by sagli and fjell (2011), increased political interest for disability policy and development of health and rehabilitation services has not been able to provide necessary services for the rural population in china. a market economy, urban and gender bias combined with the particular political structures of a one-party state has produced a situation whereby services are provided for the most able-bodied of the male, urban disabled, whilst the poor, rural disabled are hit by increasing costs and inadequate health services, even in a situation of rapid economic growth. likewise, the analyses of policies and instruments in malawi and uganda by wazakili et al. (2011) reveals that a disability perspective is easily sidelined in poverty reduction efforts if not specifically incorporated in the process. the contradiction between the policy level and the reality of disabled people living in poverty is further demonstrated in the study by hansen and sait (2011) in south africa, where the introduction of a medically and individually based disability grant conflicts with culturally based solidarity and understanding of disability. these and other examples illustrate very clearly that mechanisms are needed that ensure that the voices of disabled people are heard and acted on, and that a twin-track approach (dfid 2004) combining specifically targeting individuals with disabilities with mainstreaming disability into general poverty alleviation programmes is necessary. some authors (hansen & sait 2011; husum & edvardsen 2011) challenge the very distinction between disability and poverty – poverty is disability. with the broadening of the understanding of both concepts, overlap between the concepts and possibly some form of convergence is emerging. consequently, combating poverty equals the reduction of disabling mechanisms. this may be a very fruitful and not least politically powerful perspective in contexts where poverty is endemic and the consequences of poverty are particularly severe for individuals with disabilities and their families. the view is further interesting in relation to the mdgs and the efforts of the international community to eradicate poverty. a possible consequence of such a viewpoint is found in the un monitoring report (un 2011:7) which states that ‘a growing body of research now shows that the most pressing issue faced by millions of persons with disabilities worldwide is not their disability but rather poverty. much of this poverty is the direct and indirect result of exclusion and marginalization of persons with disabilities due to stigma and prejudice about disability’. it is however recognised in the report that the links between disability and poverty are poorly understood, but also that they are more complex and nuanced than previously anticipated. further reflections top ↑ the review of recent surveys and qualitative studies on disability and poverty has provided some insights that may contribute to the research field. firstly, the surveys confirm substantial gaps in access to services, and a systematic pattern of lower levels of living amongst individuals with disability as compared to non-disabled. because of the design, however, they do have some important limitations. longitudinal designs based on theoretical models on disability and poverty are suggested as a necessary next step to provide stronger evidence for the mechanisms behind the overrepresentation of individuals with disability amongst the poor. the qualitative studies have shown the relevance of cultural, political and structural phenomena in relation to poverty and disability, but also the complexity and the contextual character of these forces that may sometimes provide or create opportunities either at the individual or the collective level. whilst not establishing evidence as such, the qualitative studies contribute to illustrating some of the mechanisms that bring individuals with disability into poverty and keep them there. the association between disability and poverty is real in low-income contexts, but it may not always be as marked as we tend to think, and it may sometimes not play out at all. a disability status gives challenges but, for some, also opportunities that he or she would not have got without being disabled. our point is that we should be able to have two things in mind at the same time: disability and poverty are linked, but also that many individuals with disability manage – and that individuals with disability as a group are just as heterogeneous as other population groups, also when it comes to economic, social and political inclusion. endemic poverty in many ways creates the negative conditions that affect all, whilst the consequences of disability may be seen as more fluid and depend on a whole range of factors that can either be barriers or facilitators for inclusion and participation. whilst the mdgs have been heavily criticised for not including disability (albert 2006), it may be argued that it is mostly about poverty in the sense that eradicating poverty will also imply preventing disability, alleviating the consequences of disability, and eradicate disabling conditions. this however, may be questioned simply by observing the situation globally. in many societies at different levels of welfare and economic development, there is a persistent pattern of disabled people being poorer and less engaged and less able to participate in society, for example in employment and education, as compared to non-disabled. loeb et al. (2008), for instance, showed that the relatively generous disability grant in south africa did remove the economic (income) differences between households with and without disabled members, but that differences remained with regards to other elements in a broader conception of poverty. bringing people out of poverty will thus not in itself eradicate disability and disabling conditions, regardless of the level of understanding of disability. many of the mechanisms that side line individuals with disabilities in society are at work in developed welfare states as well as in poverty-stricken countries. this implies primarily that disability, discriminatory practice, cultural beliefs, environmental barriers, lack of equitable basic services, etc., are all factors that need to be dealt with or utilised in poverty alleviation efforts in order to ensure that people with disabilities benefit in an equitable manner. otherwise, the risk is that a segment of society, i.e. individuals with disabilities and other vulnerable groups, will remain in poverty whilst a successful reduction in the poverty rate is celebrated. individualisation of disability, as we find in the western/european-dominated discourse on disability (mollow 2004), has its evident limitations when the main problems are structural and political. in this perspective it is interesting that recent development of the conceptual understanding of disability, has, in fact, incorporated social and political structures (environment). phenomena at this level are thus accepted as being central parts of the disablement process. whilst cultural, political and structural phenomena clearly can cause poverty and disability, we do not, however, understand these contributions as presenting arguments against the relevance of the individual level. rather, in poverty-stricken contexts, political and structural changes will be cardinal in allowing people to live their lives in dignity and to be able to fulfil their potential, contributing to their families and to the community. the different levels of explanation are intertwined, and it would be a mistake to discard individuals’ own efforts. individuals with disabilities living in poverty do struggle to survive and to make the best out of their situation – and there are encouraging examples of individuals who have used their disability as a resource for themselves and for others in the community. the distinction between the political/structural level and the individual level is a reality, however, and many individuals with disabilities are born into or brought into poverty by forces outside themselves and their families. bearing in mind the dangers of victimisation and defeatism, it is nevertheless evident that structural, political and even cultural changes are crucial for breaking the poverty disability circle. it is particularly important to underline this as the understanding of disability as well as interventions often centre around the individual. even the icf, with its attempt at incorporating environmental or social factors, basically represents an individual understanding, at least if this is not challenged and the environmental aspects are not further developed and strategically utilised. the different levels of explanation, which is also where the keys for breaking the poverty-disability circle may be found, cannot be viewed separately from each other. policy changes with the best of intentions may fail or even be counterproductive if people’s cultural beliefs, structural barriers or policy shortcomings, are not considered as playing key roles. resourceful individuals and communities may fail in their countermeasures if overcome by forces of structural violence. further, whilst there are clearly general knowledge and experiences that can contribute to understand disability and poverty as a global phenomenon, contexts are different and require separate analyses and unique solutions. a valuable challenge to established and largely western-dominated thinking around disability and poverty is found in the distinction between individualised and political or structural explanations, but this distinction should better inform research to avoid individual bias and to ensure that research is based on an understanding of the intertwined relationship between the two levels. including disabled people and their representatives or advocates in the policy process is not only correct in a democratic and human rights perspective, it is also crucial for finding the right solutions. finally, due to the complexity of the disability–poverty relationship, it will be necessary to draw on a range of methods, including longitudinal survey research to test active mechanisms statistically with qualitative approaches revealing meanings and cultural values of significance for both social and structural phenomena as well as individual interpretation and choices. whilst disabled people in poor contexts are and have been deprived of basic services, the inclusion of individuals with disabilities will in many instances be a challenge due to lack of education, experience and not least due to weak organisations. it is of importance to recognise this and to put long-term capacity building in place. however, individuals with disabilities have struggled, survived and managed to influence the international discourse on disability and poverty under very difficult conditions, bringing evidence to the fact that they also represent a tremendous resource that can be used to improve the situation for the poorest of the poor. after all, individuals with disabilities are experts on living with disabilities. without this experience, and without challenging and breaking up established power structures, the fight against poverty will be jeopardised. acknowledgements top ↑ this article is based on many years of research experience and particularly on the contributions in disability and poverty (eide & ingstad 2011). we are grateful to all authors who contributed to the book. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions this article is based on the authors’ own research experience and reflections, and the various contributions to disability and poverty (eide & ingstad 2011). both a.h.e. 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bourguignon, f., 2004, development and poverty reduction: looking back, looking ahead, the world bank, washington. who, 2011, world disability report, world health organization, geneva. yeo, r. & moore, k., 2003, ‘including disabled people in poverty reduction work: nothing about us, without us’, world development 31(3), 571–590. http://dx.doi.org/10.1016/s0305-750x(02)00218-8 abstract introduction research methods and design results challenges in caregiving positive experiences in caregiving discussion conclusion acknowledgements references about the author(s) faith maronga-feshete department of rural health, faculty of health sciences, university of the witwatersrand, johannesburg, south africa sonti pilusa department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa abigail dreyer department of rural health, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation maronga-feshete, f., pilusa, s. & dreyer, a., 2024, ‘“i’m proud of my son with cp”: cerebral palsy caregivers’ experiences, gauteng province’, african journal of disability 13(0), a1357. https://doi.org/10.4102/ajod.v13i0.1357 original research ‘i’m proud of my son with cp’: cerebral palsy caregivers’ experiences, gauteng province faith maronga-feshete, sonti pilusa, abigail dreyer received: 19 oct. 2023; accepted: 14 feb. 2024; published: 27 june 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: caregivers of children with cerebral palsy (cp) are critical in the survival and well-being of their children. despite the caregivers’ particularly demanding responsibilities, literature on their experiences is limited. objectives: this study explored the caregivers’ experiences of providing care to children with cp. method: an explorative qualitative study design using semi-structured interviews was employed. all interviews were audio-recorded, transcribed verbatim and analysed guided by colaizzi’s seven-step methodology. results: two themes emerged: the challenges in caregiving and positive experiences of providing care. caregivers faced financial, psychological, social and physical challenges such as stigmatisation, a lack of work accommodations, time constraints due to demands of providing care, strained family relations, isolation, exclusion, emotional and physical exhaustion in their caregiving role. despite the challenges, they also had fulfilling, positive experiences. caregivers became more resilient, some relationships were strengthened and awareness of the cp condition increased over time. conclusion: caring for a child with cp is challenging. cerebral palsy is a permanent disability; therefore, a holistic, long-term perspective to supporting caregivers is necessary to ensure they can care for their children adequately. contribution: there is a need for various support structures for caregivers to lessen the burden of care. it is necessary to establish the relationships between the support structures available and the way that these structures are viewed and consequently utilised by the caregivers. this study highlights the experiences and needs of caregivers to inform stakeholders on intervention strategies. keywords: cerebral palsy; caregivers; challenges; negative experiences; positive experiences. introduction cerebral palsy (cp), a neurological nonprogressive impairment, is reported to be the most common cause of childhood disability globally, with long-term physical and social consequences (zuurmond et al. 2018). the global prevalence of cp has been estimated between 2.0 and 2.5 cases per 1000 live births. however, it is higher in low-income areas. cerebral palsy is more prevalent in poorly resourced settings such as countries in sub-saharan africa (mangamba et al. 2022). in african settings, cp prevalence was estimated at up to 10 cases per 1000 births (malla et al. 2022). even this high record of cases may still be an underestimate because of low reporting of neurologic conditions in the african context (malla et al. 2022). in south africa, the prevalence of cp has also been estimated at 10 cases per 1000 live births (zuurmond et al. 2018). children with cp may have sensory, physical and intellectual deficits that limit mobility and self-care activities, such as independent feeding, dressing and bathing (bearden et al. 2016). sensation, cognition, perception, musculoskeletal development, muscle tone, movement, posture, communication and behaviour may be impaired (morgan & mcginley 2018). other comorbidities include visual, speech and hearing impairments, orthopaedic deformities, general poor health, malnutrition because of feeding problems and epilepsy (gonzalez et al. 2023; malla et al. 2022). due to the chronic nature of cp and its multiple comorbidities, cp has a significant impact on the quality of life (qol) of the child and their caregiver (fairfax et al. 2019). for the child, the multiplicities of health challenges imply a lifetime of dependency. for the caregiver, it implies long-term, constant provision of care (kvarme et al. 2016). care needs for children with cp may exceed the expectations of the caregivers. in most cases, caregivers are not adequately prepared to execute this demanding role, resulting in significant strain on the caregiver (chiluba & moyo 2017). while some families may be able to negotiate this path, others require assistance as they face the medical, psycho-social and financial strains of having a member with cp (sayed, alaskar & alonazi 2020). caregivers providing such informal care are also likely to experience negative health outcomes because of the emotional and physical impact of care, social and cultural factors, financial demands and demands for providing care for other family members (sayed et al. 2020; dambi et al. 2016). one study done in zambia showed high scores of long-standing strain and high psychiatric morbidity in caregivers of children with cp (chiluba & moyo 2017). another study done on polish primary caregivers revealed that caregivers of children with cp experience higher levels of anxiety and depression compared to caregivers of normally developing children (gugała et al. 2019). this is also supported by a kenyan study, which indicated that not only are caregivers of children with cp more stressed, but their households are also poorer (hunt et al. 2021). it is therefore important to ask what the experiences of caregivers of children with cp are regardless of their economic standing, social or cultural contexts. this study explored the experiences of south african caregivers of children with cp and presented the challenges, struggles and achievements in their role. this study will be beneficial in informing and directing intervention efforts in lessening the burden of providing care. research methods and design study design an explorative qualitative design was used to give an in-depth understanding of the experiences of primary caregivers. semi-structured interviews were conducted to explore and capture personal experiences of participants. the study design was appropriate to understand complex life experiences and extract the unique experiences of caregivers. the use of techniques such as probing, observations in the caregiver’s home environment, note-taking during the interview all combined to give depth and detail to the interview. study setting the study was conducted in diepsloot, a predominantly informal settlement in johannesburg, gauteng province, south africa. diepsloot is in region a of johannesburg metropolitan municipality, 40 km north of the city of johannesburg (mahajan 2014). the township of diepsloot emerged as people were being evicted from neighbouring farms and privately owned land in the 1990s. currently, diepsloot’s population is estimated at over half a million (cahill 2019). in addition to the migration of south africans to diepsloot, the area has also received many unregistered immigrants who come as job seekers from other african countries. high unemployment rates and crime levels, poor water and sanitation systems, issues of adequate and appropriate housing, service delivery and effective local governance plague diepsloot. the existing amenities are overburdened by the increasing population (mahajan 2014). most families are dependent on government social grants. the most accessed grants include the child support grant, old persons’ grant and the disability grant. though these financial assistance platforms are available, beneficiaries are limited to south african nationals, permanent residents and registered refugees (mahajan 2014). study population the study population comprised of primary caregivers of children with cp whose children attended a daycare centre at an npo for people living with disabilities in the area. the centre allowed the researcher to send letters to families via the children at the end of their school day. the letter given to the children briefed families of the intended study. caregivers responded through a tear-off slip on the letter, that they would be willing to participate. they provided their contact details that the researcher used to contact them telephonically and establish who the primary caregivers were. a primary caregiver was defined as the individual who was mostly responsible for taking care of the child at home. to meet the inclusion criteria, the primary caregiver and the child had to reside in diepsloot or immediate surroundings, the child under their care must have been medically diagnosed with cp and under the age of 18. there was a total of 10 primary caregivers whose children attended the daycare centre who were eligible for the study. all 10 caregivers consented to participating and were all recruited into the study. data collection section a of the interview guide captured the demographic information of the child (age, gender, diagnosis, gross motor functional level) and that of the primary caregiver (age, gender, level of education and employment status). section b consisted of open-ended questions that targeted the caregivers’ experiences in providing care. a pilot study was conducted in which two caregivers were interviewed to ascertain the adequacy of the research tool and to be acquainted with the process of data collection. the interviews were conducted in participant’s preferred language. field notes were taken from the researcher’s observations of body language, family interactions and living conditions. this was relevant in providing more detail about the conditions within which families lived and observe any struggles or challenges that existed but may not be reported. observing expressions in facial or body language provided an opportunity for the researcher to probe further when necessary and add depth to the information obtained during the interview. all the interviews were recorded using an audio-recorder. the coronavirus disease 2019 (covid-19) protocols were observed in all interviews. data collection commenced from january 2021 to april 2021. data analysis the audio interviews were transcribed verbatim in the language that the interviews were conducted by an independent transcriber. transcripts were then translated into english. translations were checked before analysis by the first author. interviews were exported to maxqda 11 version 18.2.0. the software was used in the general sorting and organisation of data as well as analysis. data were analysed using thematic analysis, transforming text into meaningful units, codes, categories and themes. the authors individually coded a transcript inductively, followed by a discussion on the codes and the categories. a coding framework was developed and used to code the rest of the transcripts. categorisation was conducted by the first author and reviewed by the co-authors. a further abstraction of the data to develop themes related to the study objective was performed by all the authors. below is a summary of the steps taken in the data analysis. summary of the colaizzi’s thematic analysis process methodology (nowell et al. 2017) familiarisation with the data was done through re-reading the scripts to gain understanding of the content. generation of initial codes was done through identifying and labelling codes. theme searching was done through searching the data for recurring points to obtain the themes in the codes identified in step 2. reviewing and refining themes done through refining the identified themes. naming themes through clearly listing themes and giving clear descriptions of themes. writing the analysis where researchers compiled the report, presenting the findings of the analysis. member checking was done telephonically on some of the interviews. the author established dependability of the study through detailing the study process in logical and easily traceable documentation. through providing a detailed description of the study settings, the researcher ensured that transferability to a similar context may be applicable. an external translator was used to check for accuracy of translations and increase objectivity of the transcriptions. there was collaboration with peers and co-authors during coding. ethical considerations an application for full ethical approval was made to the university of witwatersrand, human research committee (medical) and ethics consent was received on 04 december 2020. ethical clearance to conduct this study was obtained from the university of witwatersrand, human research committee (no. m2011133). results ten caregivers, eight mothers and two fathers of children with cp, were interviewed. the age range of caregivers was from 28 to 60 years of age. the ages of the children whose caregivers were interviewed ranged from 4 to 17 years of age. four were girls while six were boys. only two children were functionally ambulant. one used a walking frame and the other self-propelled on the floor. at the time of the interviews, none of the children attended day-care or special needs schools because of the covid-19 school restrictions. table 3 illustrates the children’s age, gmfcs levels and the types of assistive devices used. table 1: demographic information of caregivers. table 2: demographic profile summary of the children in the study. table 3: gmfcs level and assistive devices. themes two themes emerged from the study, namely challenges in caregiving and positive experiences in caregiving. challenges in caregiving the caregivers expressed challenges they experience when providing care to the children with cp. the challenges affected the financial, emotional, physical and social aspects of their lives. financial taking care of a child with cp was costly because of the additional special needs of a child with a disability such as diapers, dietary supplements and special food transport cost, hiring temporary care and paying fees in special schools. these needs require substantial finances: ‘it is very expensive actually to have a disabled kid because you need a lot of things … pampers, then the kind of food you give him, you must make sure you choose the right food.’ (gilbert, child 16 years, gmfcs 5) ‘you know when you buy her pampers, for example, a pack is r310.00 they don’t last her the whole month. you buy at least twice … what is she going to eat? you start to have stress … you also must have transport money to go to the hospital to fetch her medication. when you leave her with someone from outside you must pay.’ (joy, child 16 years, gmfcs 5) figure 1: themes and subthemes on experiences of caregivers of children with cerebral palsy. social taking care of a child with cp was also socially challenging. work, relationships and community perceptions on disability made caregiving difficult. incorrect traditional beliefs about disability affected the caregivers’ ability to accept their children’s condition: ‘i avoid those ones. i don’t care what they say. i look after my child only, i know that they talk, but i don’t care … and as i was saying i am not used to a lot of people, i don’t even go to other people’s houses and there is no one who comes here.’ (joy, child 16 years, gmfcs 5) ‘when he was still young the one other thing i hated was when someone came to me and said ‘shame’ to me. i hate that word, “shame”. sometimes it’s even an older person, you can’t talk back, and they will say shame and then my tears will start rolling. at that time, you can see that when you come with him, people will start distancing themselves and then look at you like it is for the first time that they see something like that … so, i will get more angry. “why can’t you ask me, why do you look at him like that.” i get frustrated.’ (fiona, child 17 years, gmfcs 5) ‘if you have a baby and i see your baby and i don’t say “hello, hello baby”, to play with the baby, then what do you think? can you say this person is happy for my child? or sometimes they say, “hey boy you don’t talk.” they don’t say “hello boy”, they say, “oh you don’t talk”, then what am i supposed to think? it’s useless to talk to them, just keep quiet. the main thing with these kids is it’s not easy for other people to accept especially somebody who doesn’t have a kid like that in his or her family, it’s not easy.’ (gilbert, child 16 years, gmfcs 5) physical caregivers highlighted the physical strain they experienced when caring for their children with cp. as the children grew older, they became heavier and difficult to manage: ‘now tshepo is growing, many things i fail to do with him because even lifting him up hurts my back because he is heavy.’ (hugo, child 15 years, gmfcs 5) ‘so, the biggest challenge i have is that he’s growing. we can’t put him on our backs anymore. when you carry him, he’s tall, and then when i carry him, he looks thin, but he is heavy, i don’t want to lie.’ (fiona, child 17 years, gmfcs 5) ‘he is too heavy, but we have to lift him to the bath, and we sit him on that kids’ plastic chair and then bath him there.’ (isabel, child 15 years, gmfcs 5) as the children become older, the caregivers worried about their future and who would take over the care if anything happened to them. joy expressed that: ‘there is no one who is helping me … it’s me alone, there’s no one even from my family. so, if i am no longer here what will happen?’ (joy, child 16 years, gmfcs 5) vocational challenges work life and work prospects were affected. finding and keeping work was not easy for the caregivers, thus affecting their family financial status: ‘[i]t [cp] changed my life because i didn’t have time to look for a job. i was looking after her all the time until i found this job where i can come with her to work because it is a creche.’ (carol, child 4 years, gmfcs 4) another caregiver reported: ‘… i must take care of him; i can’t go to a job. who will look after him when i am not here?.’ (hugo, child 15 years, gmfcs 5) family relationships other social challenges included strained relationships. some of the caregivers were abandoned by their partners: ‘as i said, at first, i told you how my son was, big hair, big eyes and he didn’t have a forehead and he was thin … i could see his father struggling, i never attended a support group at hospital, he is the one that was attending because he couldn’t accept the condition. that is when we broke up because i saw that he was blaming me a lot.’ (fiona, child 17 years, gmfcs 5) communication with the child the caregivers struggled to relate with their children with cp. they expressed difficulty in understanding the needs of the children and they had to rely on their instincts. inability to communicate with their children caused a lot of stress: ‘[a]nd sometimes we don’t know anything. i could be trying to feed him, and he doesn’t want, and i don’t know if he doesn’t want to be fed by me, or the food is not nice or the food isn’t right, what is wrong with the food, is it not enough sugar, is it not enough salt, what do you want? so, it’s a big challenge to feed. feeding only, and there are other things that need to be done… if they can help us to make sure these kids can communicate. that is the main thing, communication. if he can try to communicate and say i want to do this, i want to do this., i know he cannot speak but sign language or whatever he can say yes or no.’ (gilbert, child 16 years, gmfcs 5) another caregiver shared the same experience. she indicated that: ‘[t]he challenging thing is that he can’t talk, and everything you must think for him, like what do you want? even if he is in pain, you can just see that something is wrong but where, you don’t know. you just must take him to the doctor because you can’t give him medication when you don’t know what is wrong.’ (busi, child 6 years, gmfcs 5) emotional challenges caregiving was emotionally challenging, impacting the well-being and self-care of caregivers. some caregivers felt disappointment from not having a healthy child as expressed below: ‘at first, i was disappointed; i was not accepting this condition. i was stressed, losing weight because of stress. … it’s not an easy thing to cope with it but you must tell yourself this is what god gave me. maybe with that we are trying to tell ourselves so that we cope but it’s frustrating.’ (gilbert, child 16 years, gmfcs 5). ‘[w]as disturbed because, you know when you have had kids before who were never like this you start to have stress and asking yourself what has happened now, what is happening.’ (esther, child 16 years, gmfcs 4) caregivers expressed how they overlooked their personal well-being because care-giving was time consuming and thus they neglected their self-care. ‘[a]t first i felt like i was running like i’m losing my mind, not knowing what to do because i was focusing more on him [child with cp] than on myself and i was always stressed … i focus on him a lot and so my own time is very little.’ (fiona, child 17 years, gmfcs 5) positive experiences in caregiving despite the challenging experiences, there were positive experiences of providing care. the whole experience of caregiving shaped caregivers’ outlook towards life. the caregivers’ relationships were strengthened as expressed: ‘our marriage became more stable. now we are also praying, and we are more open with each other and that helps us.’ (dora, child 8 years, gmfcs 5) ‘i believe, luckily, we had so much special love for gift [child with cp] so that made us think that gift is not her [the mother] responsibility alone or my responsibility alone and that made our marriage survive.’ (isabel, child 15 years, gmfcs 5) for other caregivers, friendships and support structures were forged based on the common role of caregiving: ‘yesterday i spoke to another caregiver of a child with cp… she asked how my son was doing, and i also asked how her child was doing? they came to my son’s birthday in october, november we went for her son’s birthday.’ (fiona, child 17 years, gmfcs 5) for other caregivers, the whole experience built their resilience as they learnt to accept their situation and developed a sense of confidence in their role. for example, gilbert said: ‘i have accepted a lot, both my child’s situation and mine. it’s not easy. because i have accepted, it looks like it’s easy and yet it’s still not easy … i think i’m fine. i have done this [caregiving] for the past 16 years and yoh, that is a long time. i think i’m fine now.’ (gilbert, child 16 years, gmfcs 5) in addition, the caregivers learnt a lot from taking care of their children with cp. through different courses, they learnt about the cp condition and skills on how to care for a person with a disability: ‘being a mother of a child with cp comes with a lot of challenges, but then you also learn a lot, a lot. you get more knowledge about health, especially cps.’ (busi, child 6 years, gmfcs 5) ‘last year, my child wasn’t crawling. so, they taught me how to do the exercises to help her learn to crawl. i started going to the ngo for people with disability when she wasn’t sitting down. now, she can sit, she can crawl, i’m looking forward to seeing my child stand or to walk.’ (carol, child 4 years, gmfcs 4) the caregivers learnt problem solving skills and could seek for more information when they needed it: ‘when i get home from hospital, i will remember something they told me, i will google and find more information about what’s going on. at first, i didn’t know that he had quadriplegia because they didn’t tell me that he is a quadriplegic. i only heard the doctor saying it, after the students went out then i ask him what he meant when he said my child is a quadriplegic. i googled and got even more information.’ (fiona, child 17 years, gmfcs 5) caregivers had a sense of pride and joy in their children despite their challenges: ‘i’m proud of my son. i’m proud and i’m happy with him.’ (gilbert, child 16 years, gmfcs 5) ‘i want to tell them the way tshepi is. he is friendly, he likes people, and he likes gospel music. he makes me happy.’ (hugo, child 16 years, gmfcs 5) discussion challenging experience of providing care having a child with cp is traumatic, with feelings of loss, anger, shock and denial (fernández-alcántara et al. 2015). this study found that the caregivers experienced challenges when providing care to their children with cp, affecting their emotional, physical, financial and social lives. caregivers become prone to emotional stress, depression and sometimes repressed hostility (singogo, mweshi & rhoda 2015; vadivelan et al. 2020). one study done in zimbabwe highlighted that cp was associated with evil, viewed as punishment from ancestors for the mother’s wrongdoing (muderedzi et al. 2017). in kenya, mothers of children with cp reported feelings of stigma and shame, with their children being treated as if they were not human (bunning et al. 2017). similar to other studies, this study showed that some mothers were abandoned by their spouses, and some family members were unwilling to care for or even touch the child. a lack of knowledge and public awareness of the causes of cp may cause such discrimination and stigmatisation, leading to social withdrawal of caregivers and their children. financial constraint is a common barrier to providing optimum care. this is because of extra costs in transportation, therapies, assistive devices, special diets, nappies and the lack of appropriate beneficial economic opportunities for caregivers. without the financial capacity to meet basic needs, the role of caregiving is distressful, in many cases forcing caregivers to forego their own needs (trindade et al. 2020). financial costs associated with caring for a child with cp may affect a family’s financial stability (hunt et al. 2021). lack of work accommodations, time constraints and caregiver-fatigue and high rates of hospitalisations predispose families to an increased risk of poverty (carter et al. 2021; simeu & mitra 2019). transport and hospital-stay costs alone place a major financial strain on caregivers and their families. social integration of the child may become unaffordable (paajanen, annerstedt & atkins 2021). these factors may contribute to increased stress and somatic illnesses as well as perpetuating the cycle of poverty, hence family donations or governmental social grants become critical (gamarra et al. 2020). caregivers invest their effort, time and finances, sometimes at the expense of their emotional well-being and physical health, careers and other family members. the qol of the caregiver and the family as a whole may be negatively affected (trindade et al. 2020). other common challenges are strained marital relations, family and community stigmatisation, physical and emotional exhaustion, isolation of the child and social exclusion of the caregiver (menlah & osei 2020). traditional or social beliefs shape attitudes and affect the parenting, caregiving capabilities, psychological and physical health of caregivers (muderedzi et al. 2017; donald et al. 2014). as a result of stigmatisation, caregivers do not seek support or engagement in relations that may be helpful, forcing them to isolate and carry the burden of caregiving on their own (wijesinghe et al. 2015). in addition to these social difficulties, the uncertainty in caregiving skills required when handling complications of cp makes the caregiving role even more daunting. a lack of information (or the poor communication of it) and the lack of continued long-term care from healthcare professionals compound the challenges of providing care, leaving caregivers feeling alone and unsupported (nuri, aldersey & ghahari 2019). the lack of appropriate assistive devices is a major barrier faced by most caregivers in resources-strained settings and it worsens the challenges of providing care (hanass-hancock et al. 2017). caregivers in resource-deprived settings carry their children on their backs when attending medical appointments on account of a lack of assistive devices, the appropriateness of assistive devices or difficult terrain (donald et al. 2014). positive experiences resilience and fulfilment not all experiences of caregivers are negative. caregivers also have rewarding and fulfilling outcomes in performing their caregiving roles (mckenna et al. 2022). being a caregiver of a child with disabilities in a resource-strained environment resulted in building resilience and fortitude over time (mckenna et al. 2022). even though all caregivers in the current study had challenges, they resiliently carried on with their roles, finding fulfilment in their children and in caring for them. they managed to continuously shift and adapt to the physical, psychological and socio-economic demands of the caregiving role. resilience is dynamic and not necessarily an inherent state that is immovable (mckenna et al. 2022). as such, resilience can be built and can fluctuate through different phases of challenges. the quality of being resilient cushions caregivers from negative outcomes such as burnout and frustration resulting in relationship satisfaction, positive affect and better qol (mckenna et al. 2022). through built resilience and despite the burden of care, caregivers were able to experience joy and pride from their children. affection from care recipients brings fulfilment to the caregiver (lin, rong & lee 2013). caregivers receiving affection and gratitude from their children with cp in gestures such as smiling, recognition of voices and showing excitement or contentment brings fulfilment to the caregiver. increase in the knowledge and management of cerebral palsy pushed by the uncertainty of their competence to perform their role or even fear of doing something wrong in the caregiving role, caregivers actively engaged in acquiring information from different sources (huang, kellett & st john 2010). they acquired skills and information from therapists, the internet and from each other. such knowledge was helpful in alleviating the stress and burden of caregiving. strengthened relationships the common thread of findings indicates that having a child with a disability negatively impacts relationships (mitra et al. 2017). on the contrary, this current study revealed that some marriages were strengthened over the common goal of protecting and providing for the child with cp. in support of the study’s findings, strengthened family relationships as an outcome of providing care has been noted in long-term neurological conditions in other settings (mckenna et al. 2022). conclusion the experience of caregiving has both challenging and positive experiences. caregivers of children with cp are faced by a myriad of complex challenges that require multi-dimensional interventions. issues of poverty, discrimination, compromised access to health care and the lack of knowledge compromise the health and well-being of caregivers and, inadvertently, that of the children in their care. the interconnectedness of these challenges requires a comprehensive approach but also indicates that a single intervention may have a ripple effect into other areas of caregiving. acknowledgements the authors would like to thank all the caregivers and their families, who participated in this research project. they extend their gratitude to the npo board members and the management. this article is based on the author’s thesis entitled: ‘primary caregivers of children with cerebral palsy: exploring their experiences and support structures in diepsloot, johannesburg metropolitan area, gauteng province’ towards the degree of master’s in public health, in the faculty of health sciences, university of the witwatersrand, south africa, on 19 october 2022 with dr sonti pilusa and abigail dreyer. it is available here https://hdl.handle.net/10539/35500. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions f.m-f. conceived of the presented idea. the authors developed the idea and procedures. s.p. and a.d supervised the research process, protocol development, data collection and analysis. f.m-f., s.p. and a.d. discussed the results and contributed to the final article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available on request from the first author (f.m-f). the data are not publicly available because of ethical restrictions as they contain information that could compromise the privacy of research participants. disclaimer 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https://doi.org/10.1186/s12889-020-08808-0 wijesinghe, c.j., cunningham, n., fonseka, p., hewage, c.g. & østbye, t., 2015, ‘factors associated with caregiver burden among caregivers of children with cerebral palsy in sri lanka’, asia-pacific journal of public health 27(1), 85–95. https://doi.org/10.1177/1010539514548756 zuurmond, m., o’banion, d., gladstone, m., carsamar, s., kerac, m., baltussen, m. et al., 2018, ‘evaluating the impact of a community-based parent training programme for children with cerebral palsy in ghana’, plos one 13, e0202096. https://doi.org/10.1371/journal.pone.0202096 article information author: ashraf kagee1 affiliation: 1department of psychology, stellenbosch university, south africa correspondence to: ashraf kagee postal address: private bag x1, matieland 7602, south africa dates: received: 12 nov. 2013 accepted: 14 feb. 2014 published: 23 apr. 2014 how to cite this article: kagee, a., 2014, ‘do disability grants influence adherence to antiretroviral therapy?’, african journal of disability 3(1), art. #100, 6 pages. http://dx.doi.org/10.4102/ ajod.v3i1.100 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. do disability grants influence adherence to antiretroviral therapy? in this opinion paper... open access • abstract • introduction • child-bearing to access disability grants: an analogous situation • creating health-enabling conditions in a resource-constrained environment • disability grants and human rights • poverty alleviation • implications for future research • concluding remarks • acknowledgements    • competing interests • references abstract top ↑ anecdotal data suggest that some south africans living with hiv who receive disability grants from the state deliberately default on their antiretroviral medication in an attempt to lower their cd4 count to remain eligible for grants. no actual empirical data however exist to show that disability grants act as such perverse incentives and are a valid reason for non-adherence. this article examines some of the complexities of antiretroviral adherence in the context of a resource-constrained environment. the multitude of structural barriers, including sometimes difficult patient-doctor conversations about the renewal of disability grants, shape patients’ experiences of the clinic environment and influence their adherence to care. introducion top ↑ in 2009, a major national south african newspaper published a report stating that ‘driven by sheer poverty, scores of desperate aids victims are refusing life-saving treatment to get social grants’ (govender 2009). the report also cited organisations such as the aids consortium and the national association of people living with hiv and aids which stated that antiretroviral therapy users refused to adhere to their treatment regimens as they believed they would qualify for a disability grant if their cd4 count was below a specific level. antiretroviral therapy (art) plays a crucial role in the maintenance of health of persons living with hiv. the data are unequivocal that the introduction of art has saved millions of lives when patients maintain high levels of adherence to their medications (parienti et al. 2008, kimmel et al. 2013; nsubuga, maher & todd 2013). the possibility that the desire to retain a disability grant may stand in the way of optimal adherence, constituting a perverse incentive to health maintenance, is therefore cause for concern. nattrass (2007) argued that south africa’s disability policy might incentivise current recipients of disability grants to remain ill by deliberately not taking their medication, resulting in an increase in viral load and a reduction in cd4 count, thus making them eligible for the continuation of their grant. nattrass however does not regard deliberate non-adherence as a significant problem. on the other hand, a study by leclerc-madlala (2006) appears to suggest that some may even deliberately become infected with hiv so as to receive a grant. a crucial question is whether, beyond anecdotal data, there exists evidence that disability grants serve as a perverse incentive for non-adherence to art. south africa’s social welfare system awards grants to aged and disabled persons, and children. adults from the age of 18 who are unable to work because of a mental or physical disability are eligible for a means-tested disability grant, consisting of a monthly payment from the state. the disability section of the social assistance amendment act, 2010 states that: a person… (is) eligible for a disability grant, if he or she has attained the prescribed age and is, owing to a physical or mental disability, unfit to obtain by virtue of any service, employment or profession the means needed to enable him or her to provide for his or her maintenance. (south african government 2010) the grant is either permanent, requiring renewal every 5 years, or temporary, requiring renewal every year. in cases of persons living with hiv, it is a requirement that a medical officer makes a recommendation about the patient’s eligibility for a grant, taking into account cd4 count and functional status. decisions about awarding disability grants to persons living with hiv are not uniform as some variability exists in terms of eligibility criteria (swartz, schneider & rohleder 2006). indeed, venkataramani et al. (2010) showed that amongst south african disability grant recipients, grants did not work as intended as some persons who should have been ineligible to receive them continued to do so. possible reasons for such continued receipt were poor oversight of grant administration or the collusion of medical staff to endorse grant eligibility when this was not warranted. in the context of south africa’s high unemployment rate, estimated at 25.6% in 2013 but which is widely considered to be substantially higher, disability grants contribute significantly to the financial well-being of the country’s households (nattrass 2005). as there is no welfare provision for the unemployed, the disability grant is the only available grant for adults of working age. in a mixed method study consisting of semi-structured interviews with persons living with hiv and public health doctors, focus group discussions with program managers and community workers, and a quantitative survey of art users, de paoli, grønningsæter and mills (2012) found that patients who were no longer eligible for grants had a substantially diminished household income. some grants have come to be seen as highly desirable as a means of generating an income. anecdotal accounts abound of the role hiv infection has played in providing persons living in poverty with a source of income via disability grants. steinberg et al. (2002) reported for example on the results of a study of households affected by hiv, in which one interviewee stated: i love this hiv, now at least with the grants i am trying… yes i like this hiv/aids because we have grants to support us. the r110 child support grant and the r570 disability grant. i applied for another grant for r390 but they were asking too many questions. (n.p.) of the 216 art-users in the study by de paoli et al. (2012) 10% agreed with the statement that ceasing to take medications was a common strategy to becoming ill so that they could renew their grant. in qualitative interviews amongst a smaller sample, some participants reported subtle ways of influencing biological markers to enhance the likelihood of grant renewal. these methods included consuming alcohol or skipping doses prior to a clinic visit. reduced financial circumstances associated with grant loss added to psychological stress but also made a healthy diet, necessary to support art, inaccessible (de paoli et al. 2012). to this extent, optimal adherence was characterised by circumstantial difficulties which, whilst not directly influencing adherence, created sub-optimal conditions for high levels of pill-taking. in a longitudinal study, venkaramani et al. (2010) investigated the extent to which disability grants constitute a barrier to adherence amongst a township sample outside cape town. amongst both grant recipients and non-recipients, reported adherence was either perfect or close to perfect and no member of the sample indicated that they would stop art to remain eligible for a grant. these authors concluded that ‘despite a high probability of grant loss… no individual reported imperfect adherence or an inclination to modify treatment for grants’ (venkaramani et al. 2010:1396). however, a secondary finding of this study was that some art users continued to receive grants despite being ineligible for them. this observation suggested that medical staff, whose task it was to determine eligibility for renewal of grants, may have out of sympathy for poor and unemployed patients, authorised renewal when this was not warranted from a strict legalistic point of view. relatedly, the practice of medical officers not abiding by bureaucratic rules in the service of their patients was documented in clinical decision-making regarding eligibility for treatment (bayer & oppenheimer 2007). they called attention to instances when clinicians overrode administrative guidelines of rationing medications under conditions of scarcity and dispensed medication nonetheless (bayer & oppenheimer 2007). in a study on structural barriers to art adherence, hiv medical personnel indicated that the issue of disability grants was an important consideration in the dynamics of hiv care (coetzee, kagee & vermeulen 2011). they reported that patients were often unaware that their grants were temporary rather than permanent, and that renewal was often not warranted because of improvements in patients’ health, ostensibly due to the effects of treatment. in cases where the health professionals believed that renewal was not warranted due to the patient’s improved health status after the expiry of the initial grant term, medical staff reported that conversations between themselves and patients about renewal of the grant sometimes led to ruptures in these relationships. in the context of several other barriers to adherence, such as long waiting times at clinics, overcrowding, linguistic barriers during consulting, and transport disruptions, such ruptures were seen by clinicians as potentially contributing to sub-optimal adherence to care (coetzee et al. 2011). barriers such as these created a difficult clinic context for the provision of care and cumulatively created and sustained structural barriers to adherence. furthermore, loss of a grant appeared to have an indirect effect on health. in sum, despite existing anecdotal data on disability grants serving as perverse incentives for patients to be non-adherent so that they could evidence a low cd4 count, no firm evidence exists to support this assertion. child-bearing to access disability grants: an analogous situation top ↑ an analogy to the supposed perverse incentive created by disability grants amongst art users is the child support grant (csg) amongst poor young women. an argument has been advanced that since its introduction in south africa in 1998, the csg created an incentive for poor women to bear children so that they may gain access to an income which, in the context of high unemployment, is inaccessible to them. a study conducted by the human sciences research council in south africa, refuted the hypothesis that csg’s constituted a perverse incentive to teenage pregnancy (makiwane et al. 2006). these authors found that the rate of teenage pregnancy started to decline prior to the introduction of the csg, that increased rates of teenage pregnancy occurred across all social sectors, including those who did not qualify for the csg on the means test, and that only a small proportion of teenage mothers received the csg anyway. the authors concluded that there was no evidence that south african teenagers deliberately fall pregnant to access the csg and to this extent no perverse incentive may be said to be in effect. the case of csg’s provides a useful analogy in understanding non-adherence amongst art users. it is probably unlikely, except in a few isolated cases, that persons living with hiv deliberately forgo their medication so that their viral load increases and cd4 count decreases in order to access disability grants. the cost of poor health and the risk of death associated with suboptimal adherence most likely eclipses the usefulness of such a strategy. creating health-enabling conditions in a resource-constrained environment top ↑ by all accounts the creation of a health enabling environment is necessary to support sustained health behaviour amongst community members. campbell and macphail (2002) define a health enabling community as ‘a social and community context that enables or supports the renegotiation of social identities and the development of empowerment and critical consciousness’ (campbell & macphail 2002:334). in other words, a health-enabling community creates conditions that enable and support health-enhancing behaviour. the notion of perceived citizen power, a corollary of a health-enabling community (campbell, wood & kelly 1999), is when citizens experience their needs, opinions and views as being respected and valued, and when they believe they have appropriate opportunities to make decisions in their social contexts (campbell & macphail 2002). the creation of health-enabling environments may hold the potential to enhance art adherence. in a resource-constrained environment, simple cash transfers to patients to promote adherence have not been sufficiently researched to warrant recommendation, and their contribution to fostering a health-enabling environment is therefore unclear. however, direct funding targeted at specific problematic areas in patients’ lives may contribute to creating a health-enabling environment within which increased adherence is likely. mukherjee et al. (2006), for example, showed that the combination of several structural and support strategies could enhance the likelihood of successful levels of adherence amongst haitian art users. these strategies included providing free medications and medical services to patients, integrating hiv services with primary care services, providing transport and food assistance to patients most in need as a way to overcoming these barriers, and providing psychosocial support to patients in the form of community health workers (mukherjee et al. 2006). in south africa’s public health system art services are provided at no charge to users. the free availability of art followed several years of political activism against pharmaceutical companies to reduce the cost of essential life-saving medications and later against a government policy of aids-denialism (geffen 2010). in explaining adherence success in sub-saharan countries, specifically nigeria, tanzania, and uganda, ware and colleagues argued that social capital played an important role in adherence behaviour (ware et al. 2009). these authors call attention to the important role that social relationships play in preserving health and ensuring survival in resource-constrained environments, noting that ‘when health care is a scarce resource, illness imposes an extra burden on social intimates who must then assume responsibility for care’ (ware et al. 2009:43). caregivers thus have to invest time, effort, energy, as well as scarce financial resources to promote patients’ health. such investment is likely to be more forthcoming if recovery is expected, rather than the continued physical decline and the eventual death of the patient. to this extent, in order for patients to maximise the social capital available to them, characterised as trust, cooperation, reciprocity, and sociability, good adherence is essential. adherence, health improvement and maintenance permit patients to rely less on others, thus preserving social capital. conversely, poor adherence and a lack of personal responsibility for health-promoting behaviour may erode social capital. art adherence is thus a health priority and therefore a social priority, which led participants in ware et al.’s (2009) sample to resort to finding funds for transport, food, and other necessities by a variety of means, including borrowing and begging, and sacrificing other important needs in the service of health maintenance. taking personal responsibility for health in the context of high social capital therefore increases the likelihood that help will be available when the need arises in the future (ware et al. 2009). in this argument the incentive of social capital and the motivation to preserve it in the event of future need stands in opposition to the presumed disincentive that a disability grant may represent when patients become well. where tension exists between the need for retention of a disability grant in the context of poverty on one hand, and the threat of the erosion of social capital on the other, it appears to be more likely that the latter will hold sway. disability grants and human rights top ↑ social welfare for those unable to work is imperative in a humane society premised on individual, political, and socio-economic rights. the question of social grants for persons living with a chronic illness takes on an additional dimension in the context of a resource-constrained environment in which the possibility of employment is close to zero for those lacking in skills, training, and experience. in one possible scenario, qualifying art-users would be eligible for a poverty-relief grant that would augment the disability grant, and even replace it when the latter is no longer renewable. recipients would thus not be reliant solely on a disability grant, as it is necessarily time-limited and available only until the patient is deemed able to work according to the national guidelines. a poverty-relief grant may contribute to household income, offsetting the dire effects of poverty to a significant extent. however, the provision of a poverty-relief grant brings into focus another problem, one which potentially contributes to social injustice: providing a financial payment to persons living with hiv may be seen as unfair to those not living with the virus. an appropriate question might be why persons living with hiv are more deserving of poverty-relief than their hiv-negative counterparts. with both groups equally impoverished, there is perhaps no compelling argument in favour of paying a cash amount to one group and not the other solely for the purpose of poverty-relief. moreover, another unintended consequence may surface of hiv negative persons deliberately becoming infected to become eligible for a poverty-relief grant. whilst no empirical data exist to suggest that deliberate infection is a widespread practice, some anecdotal data seem to indicate that it may be a concern in certain instances. for example, nattrass (2004) cites examples of zambian sex workers who charged $2.00 for sex with a condom and $4.00 without, increasing their risk of infection. they were reported as saying that they would rather die of aids than hunger (mail & guardian, 01–07 november 2002 cited in natrass 2004:n.p.). another proposal to enable poor households to meet their basic needs, stimulate economic development, and promote family and community stability is the basic income grant (big). the big coalition is premised on a clause contained in the south african constitution, stating ‘[e]veryone has the right to have access to … social security, including, if they are unable to support themselves and their dependents, appropriate social assistance’ (constitution of the republic of south africa, ch. 1, art. 27, ss. 26–28). despite the constitutional provision for social security, nearly half of south africans live in poverty (armstrong, lekezwa & siebritz 2009), with most having no access to social security. since the early 2000s the big coalition has called for a universal income support grant which would provide citizens with a minimum level of income, enable poor households to meet their basic needs, and stimulate economic development (big coalition 2009). as a discussion of the merits and demerits of big is beyond the scope of this article suffice it to say that this option appears to have faded from public discussion in recent years, and may not at this time be a credible solution to addressing the problems of adherence. poverty alleviation top ↑ both poverty relief grants and a basic income grant bring into focus an overarching feature of countries in sub-saharan africa, namely economic underdevelopment. in many countries in the global north, disabled persons have access to a range of services and resources, including subsidised housing, a guaranteed regular income, and psychosocial support (committee on the rehabilitation and integration of people with disabilities 2003). the same is not the case in countries in the global south, especially in sub-saharan africa where grants, if available, are much more limited in value. with an average gdp per capita of less than $6000.00, many sub-saharan african countries are unable to provide social assistance of any meaningful value. south africa with an average per capita gdp of $3745.00 (world bank 2010) is considered the largest welfare state in the developing world (bernstein 2005). the relationship between disease burden and economic development is reciprocal. poverty increases the likelihood of a high disease burden in a society, and disease in turn exacerbates poverty. the relationship that better health contributes to intellectual and physical development and thus greater workplace development has been well-documented. as stated in a 2005 un report ‘aids deepens poverty and increases the number of poor at risk of infection, because those with the fewest resources have the least access to health-care services or health-related information’ (united nations 2005:13). conversely, living under impoverished conditions exacerbates the spread of hiv through sexual networks characterised by transactional sex, gender inequality, migrant labour, political conflict, and forced migration. for the reciprocal relationship between poverty and the spread of hiv to be disrupted, structural changes, including economic solutions are necessary. whilst social grants may offer important and necessary short-term solutions for individuals and families struggling for survival, they are not likely to constitute permanent solutions to endemic poverty. the emphasis instead, has to be placed on education and training, job creation, and reducing stigma towards persons living with hiv. in the diagnostic overview of south africa’s national planning commission (south african government 2012), several challenges to economic development were identified. these were: too few south africans in either formal or informal employment; sub-standard school education, especially for black south africans; inadequate infrastructure which undermines developmental efforts; spatial challenges due to apartheid social planning that marginalise the poor; a resource-intensive growth path which is not sustainable; a dysfunctional public health system alongside a considerable disease burden; an under-performing public service; corruption in government; and social, class and racial divisions that characterise south african society (south african government 2012). these social and economic problems are clearly interrelated and no single approach will result in their resolution. the development of solutions to these problems requires a complex and multifaceted approach utilising the expertise and skills of a variety of players, including the political elite, trade unions, researchers, civil servants, the business community, the non-governmental sector, and others. with the ultimate objective of increasing sustainable employment rates, it may be that persons living with hiv may find that employment opportunities do indeed exist for them, obviating the need for disability grants, except amongst those whose health is compromised. implications for future research top ↑ there has been considerable descriptive research on adherence to art in resource-constrained areas, although social, behavioural and policy interventions have remained untested in yielding optimal results in terms of high levels of clinic attendance and pill-taking. it is likely that careful case study research will yield useful data on the moment-to-moment decisions taken by art users about the ways they balance the contextual demands of a resource-constrained environment with health-promoting imperatives such as adherence. in the absence of florid symptoms and in the context of competing demands on time and resources, medication adherence is seldom likely to be prioritised. interventions related to creating health-enabling environments also warrant investigation, although it is doubtful that hiv-specific interventions alone are most appropriate given the high prevalence of other chronic illnesses in many poor communities. interventions to enhance treatment adherence more broadly amongst persons living with chronic illnesses is an area in need of further research. relatedly, the interface between individual decision-making and contextual and structural factors is also in need of theoretical development.the policy implications for health promotion amongst persons living under conditions of poverty are complex. on the one hand, it has been shown that art users in developing countries are as much or more adherent to their medication regimens than their counterparts in industrialised countries (e.g. mills et al. 2006). yet, there is no doubt that poverty creates conditions that affect health adversely. poverty alleviation programmes may be the first port of call, but whether such programmes will necessarily result in health promotion is unclear. social policies that create health enabling environments by addressing the structural conditions in communities in all likelihood stand the best chances of success, for example, school and workplace health promotion, screening, and intervention programmes, community health centres that engage in outreach activities, and infrastructural development such as housing and sanitation so that the rate of infectious diseases may be reduced. these are long-term interventions that will presumably have long term implications for health and health care, and eventually medication adherence. concluding remarks top ↑ there is no direct empirical evidence for the notion that disability grants serve as a perverse incentive for patients to become non-adherent to their art medication and thus compromise their health. when considering health decision-making, including adherent behaviour amongst patients in resource-constrained contexts such as south africa, subtle ways in which the social and economic environment influences behaviour should however be noted. clinic conditions may often impede the creation of health enabling environments, because of difficult structural and personal dynamics, including a lack of agreement between medical staff and patients about the appropriateness of grant eligibility and renewal. such a mismatch of understanding should be seen together with other structural factors such as overcrowded clinics, staff burnout, food insecurity, stigma, lost wages, and varying levels of social support. by itself the disability grant mechanism is most likely not a perverse incentive to art adherence, but the terrain in which many patients in sub-saharan africa find themselves, characterised by scarce resources, contributes to the multitude of challenges which ultimately influence health behaviours, including adherence. acknowledgements top ↑ competing interests the author declares that he has no financial or personal relationship(s) which may have inappropriately influenced him in writing this article. references top ↑ armstrong, p., lekezwa, b. & siebrits, k., 2009, ‘poverty remains the priority for sa’, in sangonet pulse, viewed 17 february 2012, from http://www.ngopulse.org/article/poverty-remains-priority-sabayer, r. & oppenheimer, g.m., 2007, ‘scale-ups, scarcity, and selections: the experience of doctors in south africa’, aids 21, s43–s47. http://dx.doi.org/10.1097/01.aids.0000298102.94731.34 bernstein, a., 2005, ‘rethinking the welfare state’, in centre for development and enterprise: informing south african policy, viewed 17 february 2012, from http://www.cde.org.za/article.php?a_id=131 big coalition, 2009, viewed 09 february 2012, from http://www.big.org.za campbell, c. & macphail, c., 2002, ‘peer education, gender and the development of critical consciousness: participatory hiv prevention by south african youth’, social science & medicine 55, 331–345. campbell, c., wood, r. & kelly, m., 1999, social capital 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nsubuga, r.n., maher, d. & todd, j.e., 2013, ‘impact of antiretroviral therapy on adult hiv prevalence in a low-income rural setting in uganda: a longitudinal population-based study’, jaids journal of acquired immune deficiency syndromes 62(5), 562–568. http://dx.doi.org/10.1097/qai.0b013e3182847033 parienti, j.j., das-douglas, m., massari, v., guzman, d., deeks, s.g., verdon, r. et al., 2008, ‘not all missed doses are the same: sustained nnrti treatment interruptions predict hiv rebound at low-to-moderate adherence levels’, plos one 3(7), e2783. http://dx.doi.org/10.1371/journal.pone.0002783 south african government, 1996, constitution of the republic of south africa, 1996, viewed on 21 february 2012, from http://www.gov.za/documents/constitution/1996/a108-96.pdf south african government, 2010, social assistance amendment act, no 5 of 2010, government gazette vol. 543, cape town, 16 september 2010, no. 5 of 2010, republic of south africa. south african government (department of the presidency), 2012, national planning commission diagnostic overview, 2012, viewed 22 february 2012, from http://www.info.gov.za/view/downloadfileaction?id=147192 steinberg, m., johnson, s., schierhout, g. ndegwa, d., 2002, ‘a survey of households affected by hiv/aids in south africa’, social surveys memory box project, aids and society research unit, university of cape town. swartz, l., schneider, m. & rohleder, p., 2006, ‘hiv/aids and disability: new challenges’, in b. watermeyer, l. swartz, t. lorenzo, m. schneider & m. priestley (eds.), disability and social change: a south african agenda, pp. 108–115, hsrc press, cape town. united nations, 2005, population, development and hiv/aids with particular emphasis on poverty: the concise report, united nations, new york. venkataramani, a., maughan-brown, b., nattrass, n. & prah ruger, j., 2010, ‘social grants, welfare and the incentive to trade-off health for income among individuals on haart in south africa’, aids and behaviour 14(6), 1393–1400. http://dx.doi.org/10.1007/s10461-009-9642-y ware, n.c., idoko, j., kaaya, s., birari, i.a., wyatt, m.a., agbaji, o. et al., 2009, ‘explaining adherence success in sub-saharan africa: an ethnographic study’, plos medicine 6(1), 39–47. http://dx.doi.org/10.1371/journal.pmed.1000011 world bank, 2010, south africa gdp per capita, viewed 17 february 2012, from http://www.tradingeconomics.com/south-africa/gdp-per-capita abstract introduction method results discussion conclusion acknowledgements references about the author(s) jeannie van der linde department of speech-language pathology and audiology, university of pretoria, south africa de wet swanepoel department of speech-language pathology and audiology, university of pretoria, south africa ear sciences centre, school of surgery, the university of western australia, nedlands, australia ear science institute australia, subiaco, australia linique hanekom department of speech-language pathology and audiology, university of pretoria, south africa tasha lemmer department of speech-language pathology and audiology, university of pretoria, south africa karla schoeman department of speech-language pathology and audiology, university of pretoria, south africa frances page glascoe school of medicine, vanderbilt university, united states of america bart vinck department of speech-language pathology and audiology, university of pretoria, south africa department of speech-language pathology and audiology, ghent university, belgium citation van der linde, j., swanepoel, d.w., hanekom, l., lemmer, t., schoeman, k., glascoe, f.p. et al., 2016, ‘early detection of communication delays with the peds tools in at-risk south african infants’, african journal of disability 5(1), a223. http://dx.doi.org/10.4102/ajod.v5i1.223 original research early detection of communication delays with the peds tools in at-risk south african infants jeannie van der linde, de wet swanepoel, linique hanekom, tasha lemmer, karla schoeman, frances page glascoe, bart vinck received: 02 sept. 2015; accepted: 11 nov. 2015; published: 08 apr. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: prevalence of communication delays or disorders is increasing, possibly because of various environmental risk factors. selection and implementation of effective screening tools are important to detect at-risk infants as early as possible. this study aimed to evaluate the accuracy of the parents’ evaluation of developmental status (peds), peds-developmental milestones and peds tools to detect communication delays in infants (6–12 months) in a south african primary healthcare context. method: a comparative study design evaluated the accuracy of the peds tools to detect communication delays, using an internationally accepted diagnostic assessment tool, the rossetti infant-toddler language scale (ritls). a convenience sample of 201 infants was selected at primary healthcare clinics. results: expressive and receptive language sensitivity scores were low across all three screens (ranging between 14% and 44%). the peds tools had high sensitivity (71%) and specificity (73%) ratings for the receptive and expressive language and socio-emotional domain in combination. conclusion: in the sample population, the peds tools did not accurately detect receptive and expressive language delays; however, communication delays in general were identified. future research determining accuracy of the peds, peds-developmental milestones and peds tools for children aged 2–5 years in detecting communication delays should be prioritised. introduction the prevalence of communication delays or disorders is increasing and may be ascribed to environmental factors such as unemployment, limited medical resources, lack of educational services, violence, crime and hiv or aids (guralnick 2013). paediatric hiv or aids, for instance, is a challenging condition as it not only influences the well-being of infants but also results in prematurity and low birth weight, and later attention difficulties and speech and language delays (rossetti 2001; samuels, slemming & balton 2012). south african infants and children are particularly vulnerable because of the high prevalence of predisposing environmental factors such as these (mayosi & benatar 2014; samuels et al. 2012). the high prevalence of developmental delays or disorders amongst infants in south africa (samuels et al. 2012) necessitates selection and implementation of effective screening or developmental surveillance tools to identify at-risk infants as early as possible (van der linde et al. 2015). if communication delays remain undetected until primary school years, a child is at greater risk for behavioural problems, academic failure and socio-emotional disturbances (squires et al. 2009; yew & o’kearney 2013). with a direct link between school performance, communication skills and the role that communication plays in general development and emotional and behavioural outcomes, the importance of early identification of communication delays is obvious (rossetti 2001; wankoff 2011; yew & o’kearney 2013). early identification of and early intervention for infants at risk can prevent or reduce future developmental difficulties and academic failure whilst improving the quality of life for the infant and family (samuels et al. 2012). furthermore, these services can prevent or lessen developmental and communication difficulties (hawa & spanoudis 2014), which implies less future financial expenditure for parents with regard to medical costs, transport fees to medical centres and/or speech therapy expenses. infants receiving early intervention services, including early detection by means of developmental screening and/or surveillance as first point of access, make greater progress when the whole family is involved (guralnick 2013). because parents are usually the first to identify their children’s developmental difficulties, they are considered a good resource by healthcare providers when conducting screening tests (williams & holmes 2004). the resource-constrained public healthcare system in developing countries like south africa (mayosi & benatar 2014) requires time-efficient and accurate screening tools to ensure it is practically feasible with low false-positive rates that do not result in over-referral. parents can be used as a resource in identifying their child’s strengths and weaknesses (glascoe 2013), and providing important information to professionals. a parent-administered test may therefore be appropriate for the south african context if it is sufficiently accurate and time efficient. furthermore, selecting a comprehensive screening tool that accurately detects communication delays in addition to other developmental delays may be more suitable than developmental domain–specific screening tools in the south african, resource-constrained public healthcare context. early identification of developmental delays, including communication delays, can be facilitated by a variety of valid standardised tools. in south africa, developmental screening is implemented nationally as part of the road to health booklet (tarwa & villiers 2007). however, the road to health booklet has not been validated and its accuracy for developmental screening has been questioned (van der linde et al. 2015). the ages and stages questionnaire or asq (squires et al. 2009), denver developmental screening test ii (frankenburg et al. 1992) and the parents’ evaluation of developmental status or peds (glascoe 1997) are all well validated and standardised screening tools with large bodies of supporting evidence (macy 2012). all three tools include infants from birth; however, the denver developmental screening test ii is a clinician-administered test, whereas the asq and peds tools are parent-administered tools (macy 2012). the asq and the peds elicit parental concerns regarding their children’s development and behaviour. in a comparison study conducted in canada, both the asq and peds rendered similar outcomes and it was concluded that either one can be selected for implementation (limbos & joyce 2011). taking into consideration the cost of the tools and administration time, the peds tools have been deemed more appropriate for use in the south african primary healthcare (phc) context. whilst a recent study evaluated the accuracy of the peds and peds-developmental milestones (peds-dm) for developmental delays in the private healthcare sector in south africa (silva 2010), the accuracy of the peds test detecting communication delays or disorders in infants in the south african phc context has not yet been established. this study therefore evaluated the accuracy of the peds tools in detecting communication delays in infants, aged 6–12 months, in a phc context in south africa. method a comparative cross-sectional within-subject design was employed to evaluate the accuracy of the peds tools in detecting communication delays using the rossetti infant-toddler language scales (ritls) as a gold standard. setting data were collected at three phc clinics, namely olievenhoutbosch clinic, salvokop clinic and daspoort polyclinic. these clinics are situated in underserved communities in the tshwane district, gauteng province, south africa. the community in olievenhoutbosch consists of 70 863 individuals and 23 777 households. the clinic serves an area of 11.39 km² and is situated in centurion (statistics south africa 2011). daspoort covers an area of 2.16 km², with 6355 individuals and 1582 households (statistics south africa 2011). salvokop has a population of 7123 individuals and 1685 households within an area of 4.09 km² (statistics south africa 2011). participants as this study focused on early identification, infants between 6 and 12 months of age were targeted. convenience sampling was used as all caregivers of infants between 6 and 12 months proficient to communicate in english or afrikaans were asked to participate. the sample consisted of 201 infants, and the caregiver of each was interviewed. material because the current study aimed at evaluating the accuracy of the peds, peds-dm and peds tools in detecting communication delays, the ritls (rossetti 2001) were used as the gold standard reference. it is a comprehensive, easy-to-administer and relevant tool that was designed to assess the preverbal and verbal aspects of interaction and communication in the young child (rossetti 2001). although this is a criterion-referenced tool, it has been used and validated in previous studies (desmarais et al. 2010; dettman et al. 2007; groenewald, kritzinger & viviers 2013; rie, mupuala & dow 2008; steiner et al. 2012; sylvestre & mérette 2010). the ritls assesses interaction-attachment, pragmatics, gestures, play and language comprehension and expression of infants from birth to 3 years (rossetti 2006). the peds tools, that is the peds and peds-dm, consist of questions posed to the parent/caregiver. the peds consists of 10 questions that address parental concerns about their infant’s development. the tool can be conducted either as a questionnaire, in which parents write down their responses, or as an interview, where the healthcare professional asks the questions. it includes the following domains: cognition, expressive and receptive language, gross and fine motor, self-help, academic, health, socio-emotional/mental status and behaviour (glascoe 2013). each of these areas is represented irrespective of the child’s age (birth to 7 years 11 months) and is timeand cost-effective (glascoe 2013). the tool takes approximately 5 minutes for parents to complete and approximately 1–2 minutes for the healthcare professional to score (glascoe 2013) with a clear score guide and algorithm for referral (glascoe 1997). the referral algorithm consists of five paths, namely paths a–e: path a – when two or more predictive concerns about self-help, social, school or receptive language skills are present, refer to the respective allied healthcare professional. path b – when one predictive concern is present, administer the second-stage developmental screen, if second screen is failed refer. path c – when non-predictive concerns are present, counsel in areas of difficulty and follow-up. path d – when parental difficulties are present in communicating because of foreign language barrier, use translator in second screen. path e – when no concerns are present, re-screen at next visit. furthermore, in path b distinction is made between development-related predictive concerns and health-related concerns. the peds-dm consists of six questions posed to parents regarding their infant’s or child’s developmental milestones. the six questions differ in each age interval and represent the following areas of development: fine motor, receptive language, expressive language, gross motor, self-help and socio-emotional. procedures the peds tools and ritls were administered by an experienced speech–language therapist in a screening environment that was secluded and had limited distractions and low noise levels. the procedure entailed fetching the caregiver and infant from the clinic, obtaining informed consent, completing the assessment and interview and providing feedback. the infants were assessed according to their chronological age. referral letters for follow-up services were provided when necessary. this process took approximately 30–45 minutes to complete. appreciation for participating in the study was shown by providing a meal for the infant. data processing and interpretation rossetti infant-toddler language scale information obtained through elicitation, observation and by report from caregivers carried equal weight when scoring the ritls (rossetti 2001). if a specific behaviour was not elicited, observed or reported, it indicated that the infant had not yet reach the expected age level. the subtests are divided into 3-month intervals, for example 0–3 months, 4–6 months and 7–9 months. when the developmental level is two intervals or more below the infant’s chronological age, the infant is considered delayed (rossetti 2001). for example, if an infant is 10 months of age, but scores on a 0to 3-month-old level in the play subsection. it is important to note that the gesture subsection only starts at the 9to 12-month interval. therefore, none of the infants could present with a delay in this developmental area. peds tools the peds was interpreted in the following manner: path a–d was deemed a fail and path e was deemed a pass (glascoe 2013). if an infant had one or more unmet milestone in the peds-dm, the outcome of the test is a fail. the interpretation of the peds tools started with the peds, where path a represented a fail irrespective of the peds-dm result, but with path b–e, the peds-dm results determined the actual pass or fail. data analysis the sas version 9.3 was used to conduct the data analysis. the pass/fail and delayed/not delayed distributions and percentages were calculated. the pass/fail distribution of the peds, peds-dm and peds tools and the delayed/not delayed distribution of the ritls were presented separately in two-way tables for each domain, that is receptive language, expressive language and socio-emotional. the socio-emotional outcomes of the peds, peds-dm and peds tools were compared against the interaction-attachment subtest of the ritls. the domain-specific sensitivity, specificity and positive and negative predictive values of the peds, peds-dm and peds tools were then calculated. results participants’ profile the average age of the 201 infants (45% female infants) was 8.7 months (sd 1.9; range 6–12 months). fifteen different home languages were reported, of which sepedi (33%), isizulu (16%) and shona (11%) had the largest representation. all participants were proficient in either english or afrikaans as an additional language, but none reported either of these as their home language. most of the individuals resided in olievenhoutbosch (94%). the remaining 6% were from other areas in tshwane such as mamelodi and salvokop. the majority of the participants were black (98.5%). seven of the 201 infants were from teenage pregnancies, and 6 infants were born prematurely. of the total sample, 62% of the parents did not complete their high school education, 71% of the households had a monthly income of r3000 or less and 32% had three or more children in the home. fail rates of the peds screening tools and ritls a positive diagnosis of communication delay was made for 13% (n = 26) of the entire sample (see table 1). almost half (47%; n = 94) of the sample failed the peds on one or more of the general developmental domains, and 65% (n = 17) of these failed screens were also identified as having a communication delay on the ritls. similar fail rates were obtained with the peds-dm (49%; n = 98) and peds tools (52%; n = 104). domain-specific fail rates are also presented in table 1. table 1: fail rates of the screening tools and ritls. accuracy of the screens in detecting communication delays because the peds, peds-dm and the peds tools are developmental screening tools that include various developmental aspects, domain-specific results were compared to the ritls; focusing only on the accuracy of the tools in detecting communication delays (see table 2). table 2: developmental domain-specific performance of the peds tools in comparison to the ritls. the sensitivity of both the receptive and expressive developmental domains was poor in the peds (22% and 5%), peds-dm (33% and 23%) and the peds tools (44% and 23%). receptive language sensitivity was higher than expressive language sensitivity in all three tests. the specificity, however, in both domains were high (between 89% and 98%). similarly, the positive predictive value was poor (between 14% and 33%), in contrast to a high negative predictive value (between 89% and 97%). the peds tools’ combined sensitivity, that is receptive and expressive language and socio-emotional domains, was 71% with the combined specificity being 73%. discussion the fail rates of the peds, peds-dm and peds tools were high (47% – 52%). this was to be expected as an at-risk population was used. several high-risk factors for developmental delay were present in the study population. the majority of participants had one or more risk factor(s) for developmental delays, such as poverty (71%), three or more children in a home (32%) and limited parental education (62%). an estimated 45% of the south african population is poor, whilst 20% live in extreme poverty (statistics south africa 2011). multiple risk factors increase the probability that development will be delayed (glascoe & leew 2010) and high-risk children are 24 times more prone to have iqs below 85 than low-risk children (sameroff et al. 1987). specificity and sensitivity values of an accurate screening tool should fall between 70% and 80% (glascoe 2013). the results in this study demonstrated domain-specific (i.e. expressive language and receptive language) sensitivity scores that were low to very low across the peds, peds-dm and peds tools. such low sensitivity values may result in a failure to identify a large number of infants who require early communication intervention services. the peds tools, on the other hand, did show an accurate sensitivity (71%) and specificity (73%) rating for receptive and expressive language and socio-emotional domains in combination. high sensitivity and specificity for socio-emotional developmental delays indicated that the infant delays in the study sample were accurately identified by means of the peds and peds tools. autism spectrum disorders, for example are characterised by such impairments in social interaction, communication and behaviour, which are ostensible before the age of 3 years (baio 2012). because the results of this study indicated that peds and peds tools are able to accurately detect socio–emotional developmental delays in infants, these tools may possibly aid in the early diagnosis of autism spectrum disorders in phc. the lack of parental concern regarding their infants’ communication development in the current study population, as illustrated by the fail rate of the peds for receptive (3%) and expressive language (3%), were similar to previous research findings. a study performed by glascoe (2013) revealed that parents of infants, 11 months or younger, do not have many communication-related concerns. however, when there are concerns, it usually pertains to their children’s motor, health, behavioural, self-help and socio-emotional skills (glascoe 2013). this is possibly because gross motor milestones, such as sitting and crawling, are more observable than infant’s speech sounds and language comprehension (glascoe 2013). the low sensitivity and specificity ratings of the screening tools for receptive (22% – 44%) and expressive language (5% – 23%) reported in the current study are likely because of the difficulty to identify communication delays before the age of 12 months (eadie et al. 2010). it can be expected that parents’ awareness of their child’s communication development might be better at a later stage when the child is older and more communicative (eadie et al. 2010). it is therefore recommended that future research should evaluate the accuracy of the peds tools for communication delays in 2to 5-year-old children within the south african phc context. because the interviews and assessments were not conducted in the home languages of the sample population, it may be deemed a limitation of the current study. future research should explore the accuracy of translated tools in detecting communication delays in infants and young children. preventative strategies, such as developmental surveillance and awareness campaigns, should be considered as a way to support underserved communities where the majority of infants are at risk of communication and/or other developmental delays. conclusion the peds tools demonstrate limited sensitivity scores for receptive and expressive language domains in young infants, although sensitivity for the socio-emotional domain was high. obtained values for the peds tools did demonstrate a high degree of accuracy when considering a combination of receptive and expressive language and socio-emotional domains with sensitivity and specificity of 71% and 73%, respectively. future research determining accuracy of the peds, peds-dm and peds tools for children aged 2–5 years in detecting communication delays should be explored. acknowledgements we acknowledge the mellon foundation for funding the vulnerable children programme of the faculty of humanities, university of pretoria, the copc living laboratory of the university of pretoria and the national research foundation. we also acknowledge the vice chancellor’s academic development grant for funding the research. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions j.vd.l. (university of pretoria), dw.s., (university of pretoria & the university of western australia), l.h. (university of pretoria), t.l. (university of pretoria), k.s. (university of pretoria), f.p.g. (vanderbilt university) and b.v. 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limitations conclusion acknowledgements references about the author(s) christiana okyere school of rehabilitation therapy, queen’s university, kingston, canada heather m. aldersey school of rehabilitation therapy, queen’s university, kingston, canada rosemary lysaght school of rehabilitation therapy, queen’s university, kingston, canada citation okyere, c., aldersey, h.m. & lysaght, r., 2019, ‘the experiences of children with intellectual and developmental disabilities in inclusive schools in accra, ghana’, african journal of disability 8(0), a542. https://doi.org/10.4102/ajod.v8i0.542 original research the experiences of children with intellectual and developmental disabilities in inclusive schools in accra, ghana christiana okyere, heather m. aldersey, rosemary lysaght received: 28 nov. 2018; accepted: 15 feb. 2019; published: 24 july 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: inclusive education is internationally recognised as the best strategy for providing equitable quality education to all children. however, because of the unique challenges they often present, children with intellectual and developmental disabilities (idds) are often excluded from inclusive schools. to date, limited research on inclusion has been conducted involving children with idd as active participants. objectives: the study sought to understand the experiences of children with idds in learning in inclusive schools in accra, ghana. method: a qualitative descriptive design was utilised with 16 children with idds enrolled in inclusive schools in accra, ghana. participants were recruited through purposive sampling and data were collected using classroom observations, the draw-and-write technique and semi-structured interviews. the data were analysed to identify themes as they emerged. results: children’s experiences in inclusive schools were identified along three major themes: (1) individual characteristics, (2) immediate environments and (3) interactional patterns. insights from children’s experiences reveal that they faced challenges including corporal punishment for slow performance, victimisation and low family support relating to their learning. conclusion: although children with idds receive peer support in inclusion, they experience diverse challenges including peer victimisation, corporal punishment and low family and teacher support in their learning. improvement in inclusive best practices for children with idd requires systematic efforts by diverse stakeholders to address identified challenges. keywords: children with intellectual disability; children with developmental disability; children’s experiences; inclusive education; inclusion. introduction international guiding documents such as the united nations convention on the rights of persons with disability and the sustainable development goals emphasise inclusive and equitable quality education for all children (united nations 2006; united nations development group 2015). children with disabilities are often denied access to education, particularly in lowand middle-income countries such as ghana (world health organization & world bank 2011). the situation demands even greater attention for children with intellectual and developmental disabilities (idds) who, compared to their peers with other forms of disabilities, record the lowest school enrolment rate (world health organization & world bank 2011). the government of ghana has committed to equal rights to education for children with disabilities enshrined in several of its educational policies. these include article 25 (1) of its 1992 constitution and education strategic plan of 2003–2015 and 2010–2020 which is committed to include all children with mild to moderate disabilities in mainstream settings (republic of ghana 2003, 2012). despite these provisions, some researchers report that unlike their peers without disabilities, children with disabilities and particularly those with idds are discriminated against and institutionalised, with only about 3% of them enrolled in primary education (ametepee & anastasiou 2015; avoke 2002). children with idd experience ‘a group of developmental conditions characterized by significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills’ (salvador-carulla et al. 2011:177). the republic of ghana’s education system operates on the 6+3+3+4 structure representing 6 years of primary education, 3 years each of junior and senior secondary education and 4 years of undergraduate studies (education system ghana 2011; nketsia 2016). english is the official language of instruction and communication throughout ghana’s educational system (education system ghana 2011). even though the average recommended class size for primary and secondary schools in the country is 30–35, studies (alhassan 2014; kuyini & desai 2008) report teacher challenges with classroom management because of overcrowded classrooms and lack of resources and services. in particular, children with disabilities often lack the adequate resources and services (i.e. inaccessible curriculum, instructional materials) to succeed in educational systems (kuyini & desai 2008). international human rights documents have recognised the rights of children to express their views and participate in matters that concern them. similarly, childhood studies theorists argue that children are competent and active social actors ‘with an informed and an informing view of respective social worlds’ (james & james 2004:59), and thus, have the right to be informants in the research that concerns them. incorporating children as social actors in research requires utilising research techniques such as dialogue and drawings that allow researchers to treat them as equals and understand their experiences and interests (christensen 2004; james & james 2004). although children with disabilities are the biggest stakeholders in inclusion (bennett, deluca & bruns 1997), to date, adult participants without disabilities (i.e. teachers, parents and government officials) have predominated research on inclusion in lowand middle-income countries (i.e. franck & joshi 2017; galovic, brojcin & glumbic 2014). studies in high-income countries that utilised children’s voices in inclusive settings have found that children with disabilities experience challenges including marginalisation (i.e. being shouted at by teachers, peer verbal abuse) and loneliness which negatively impacts their emotions (adderley et al. 2015; messiou 2002). beyond education, studies on children with idds have often relied on proxies to collect data, rather than soliciting the views of children with idd themselves (majoko 2016; zachary et al. 2016). including children with disabilities as active participants in research on inclusion can provide stakeholders with a unique view of opportunities and challenges and inform targeted practices to support inclusion in the future (coates & vickerman 2010). furthermore, as noted by rose and shevlin (2004:160), paying attention to children’s views ‘enable[s] us to reflect upon how future developments may afford greater opportunities to those who have been previously denied’. to that end, we sought to engage children with idd to learn about their experiences in inclusive schools. specifically, we collected and analysed the data to answer the following question: what are the experiences of children with idd in inclusive schools in accra, ghana? theoretical framework the theory that guided our study is the bioecological theory of human development, which was first proposed in the 1970s by urie bronfenbrenner (bronfenbrenner & morris 1998; rosa & tudge 2013). bronfenbrenner developed this theory to focus research on both the individual and context and understand the complex interrelationship between the individual and environment (rosa & tudge 2013). the theory depicts that forces at various levels – biosystem (individual child), microsystem (immediate environment), mesosystem (interactional patterns amongst two microsystems), exosystem (indirect environment), macrosystem (social values) and chronosystem (changes over a period of time) – affect the development of the child (bronfenbrenner & morris 1998). strengths of the theory lie in that it is universally applicable and provides a theoretical and research framework through which both personal characteristics and environmental factors can be factored into the complexities of a child’s development. however, considering the various factors that need to be explored, it is often difficult to achieve hierarchical importance when applying the theory in practice (rosa & tudge 2013). however, based on its relevance to an understanding of the personal characteristics and all the contextual factors that influence the inclusion of children with disabilities, we utilised the theory to guide the organisation of the themes that emerged from the data. in this process, we mapped emergent themes onto the various levels of bronfenbrenner’s bioecological theory of human development. methods we utilised a qualitative descriptive design as described by sandelowski (2010), which incorporates overtones or techniques of other qualitative approaches to ensure rigour (sandelowski 2010). the qualitative descriptive approach stays close to the data and provides a straightforward, rich description and accurate account of the meanings participants ascribe to events (neergaard et al. 2009). we used this design because it allows flexibility in utilising diverse data collection methods (i.e. observations, drawings and interviews) to derive a detailed account of participants’ experiences about a phenomenon (sandelowski 2010). we analysed data concurrently with data collection and systematically to identify themes as they emerged. to answer our research question, we used art-based techniques, observations and interviews as the methods of data collection. recruitment we employed a purposive sampling strategy whereby we approached participants based on specific characteristics such as age, grade, gender and number of years in an inclusive school. we recruited 16 participants from four inclusive schools in accra, ghana. sampled schools were selected through the country’s special education ministry. we identified participants in 14 different classes in the four schools sampled. all participants met the school district’s inclusive education team’s criteria for idd, which is diagnosed by a screening stage (based on child observations), an achievement test (evidence of academic achievements) and a series of tests conducted in the district assessment centre by a clinical psychologist to confirm the presence of idd. this classification procedure was facilitated by the district inclusive education team comprising nurses, circuit supervisors and special education coordinators responsible for monitoring and supervising the implementation of school reforms to achieve inclusion in the district (republic of ghana 2013). participants were included in the study if (1) they provided assent and their parents’ consent, (2) they had been in sampled schools for at least a year, (3) they were in the mild to moderate range of idd and (4) after a review of their available student files including medical reports provided by school heads. data collection data were collected using structured observations, the draw-and-write technique (mcwhirter 2014) and interviews. data collection began with observations in the classroom for an average of 3 hours utilising mcintosh’s (1994) observation categories for students with learning disabilities as a guide (figure 1 contains the observation guide). classroom observations and interviews were conducted on the school grounds. observations included learning environments, teacher and student interactions, teaching adaptations and strategies, and participant behaviours. after each observation, field notes and memos were diarised for later transfer into microsoft word files at the end of each day. writing analytic memos was instrumental in determining concepts requiring further exploration and development (corbin & strauss 2008). figure 1: observation guide. to facilitate children’s participation in ways that resonated with them, we utilised the draw-and-write technique described by mcwhirter (2014) as an icebreaker to solicit children’s experiences. the technique entails asking children to draw a picture related to a specific topic and write about what is happening in the drawing (mcwhirter 2014). participants were invited to draw images of themselves in school and write about what is happening in the drawing. participants were encouraged not to be concerned about the outcome of their drawings because their teachers would neither view nor grade them. the results were instrumental in triggering discussions as the task was participatory and participants found it enjoyable and comfortable. we used semi-structured interviews with participants to build upon emerging themes already identified through observations and drawings and to ask new questions beyond what was observed. (table 1 details interview questions). audio-recorded interviews were conducted within 20–25 min of observations, and memos were documented at the end of each day. writing analytic memos was instrumental to the critical thinking process and in determining concepts requiring further exploration and development (corbin & strauss 2008). table 1: semi-structured interview questions. ethical considerations the study was approved by queen’s university health sciences research ethics board in kingston, canada (romeo/traq: #6019774) and the ministry of special education in ghana (ref: se. 183/101). we sought written informed consent from the district and school administrative authorities and parents prior to observations, drawings and interviews and participants provided assent to participate in the interview. we gave participants who could not sign their names properly the opportunity to provide verbal and non-verbal assent. in this process, we asked participants if they were willing to chat about their typical day in school. we included participants who responded yes and in an audible voice or nodded in the affirmative. pseudonyms were applied to ensure participant confidentiality. we used strategies including reflexivity and member checking to ensure transparency and trustworthiness in the study findings. data analysis we conducted data analysis alongside observations and interviews (charmaz 2006). subsequently, we started preliminary data analysis immediately after the first observation and interview. on a regular basis, the authors shared observations, drawing activities, transcribed interviews and analytic memos with each other during biweekly debriefing sessions for ideas and detailed directions for subsequent interviews. these sessions occurred throughout the data collection period and challenged the authors to think critically about the data while documenting reflections and information relevant to yielding rich data. the debriefing process was also significant to the exposure and critical evaluation of biases and positionality throughout data collection and analyses. furthermore, the process brought different perspectives to the data and identified emerging themes that formed the basis of additional probes and checks for upcoming observations and interviews (creswell & miller 2000). all observations, interview transcripts, field notes and analytic memos were imported into a computerised qualitative data management software program (nvivo 2011) to assist in the organisation of data, identification of categories and development of themes. specifically, we shared the database and analyses of observations and interviews amongst the team. in this process, we became familiar with the data, identified and compared initial codes and grouped similar codes into categories and developed themes central to the purpose of the study. establishing rigour we employed triangulation, peer debriefing, member checks and reflexivity throughout data collection and analysis to ensure trustworthiness and credibility in the study finding. we triangulated data using several data collection techniques (observations, drawings and interviews) from participants in different school settings. the first two authors engaged in peer-debriefing sessions and explored each other’s views and perspectives (pandey & patnaik 2014). we conducted member checks wherein we consistently repeated each participant’s responses during interviews to confirm their agreement prior to asking the next or follow-up questions (pandey & patnaik 2014). additionally, at the end of the data collection process, we organised a closing session where we chatted with participants on emerging themes and key findings. considering the age of the participants, we used a member-checking approach recommended by simpson and quigley (2016) for use with young participants. in this process, we asked participants the same questions asked in previous interviews and compared responses. all of participants’ responses reflected those in previous interviews. reflexivity entails researchers consciously examining their biases because of previous experiences, knowledge or connections with the study population (råheim et al. 2016). being a ghanaian, one of the authors approached this study as an insider with the same identity as participants and cultural knowledge of the study context. further, this author came to this study with an enthusiasm and empathy for children with idd demonstrated through 5 years’ work for their inclusion in ghana. specifically, during this time, the author assisted in enrolling and relocating children with idd into schools and half-way homes. the author’s insider perspectives, experiences with the study population and the importance attached to their accessing quality education may influence the ability to ask further meaningful and insightful questions and also interpret results from a non-biased culture perspective. subsequently, the author practised reflexivity wherein there are discussions about the knowledge and experiences of working with children with idd with the co-authors who recommended strategies (i.e. asking questions in diverse ways, probing for further clarifications) to reduce bias. the authors engaged each other in preliminary data analysis and interpretation of the data, wherein all authors coded these same transcripts independently and came together to compare codes and identify any gaps or divergences in understanding. findings the primary goal of this study was to understand the experiences of children with idd in receiving education in inclusive settings in accra, ghana. we organised our findings along three main themes: (1) characteristics and struggles at the individual level, highlighting bioand microsystemic factors, (2) characteristics at the environment level, highlighting macrosystemic factors, and (3) interactional patterns also highlighting microsystemic factors within the bronfenbrenner’s bioecological systemic framework. participants a total of eight girls and eight boys participated in the study. table 2 gives additional information about participant demographics. all students who met the inclusion criteria in a specific class were included in the study. with the exception of one participant who lived with his father and stepmother, all participants lived with both parents. all interviews were conducted in english as participants spoke english in addition to their local dialects. table 2: participant demographic information. characteristics and struggles at the individual level – biosystems in this section, we present participants’ knowledge and views of themselves in comparison with their peers without disabilities, also covering comments on their personal characteristics (i.e. behavioural challenges) and their effect on their experiences in inclusive schools. not all participants explicitly recognised themselves as having an intellectual and/or developmental disability; however, many of them (n = 11) stated that they faced academic challenges in school. ‘madam gives me work but i can’t do it…am never able to finish my work…i like english but when she asks me to read i am not able to read…when she says i should spell, i can’t spell…i don’t understand math at all…i can understand it but when it gets to exams i do not understand and it worries me.’ (pearl, 13 years old, school d) contrary to most students’ perceptions of similarity to their peers without disabilities, two participants acknowledged individual differences and varying abilities, also highlighting their personal challenges in learning and particularly in examinations. despite challenges, the participants said that they strived to participate and achieve in the general education classroom. for example, one participant explained: ‘as for the learning it’s different from everyone and what they know…so the little i know i also do it…so we are all different. i am not intelligent but i can write some of the work. i am now learning small things… in exams i don’t do well…i see the thing but don’t know how to write it.’ (ivan, 16 years old, school d) classroom observations indicated that many participants (n = 13) exhibited what was considered by the teachers to be ‘behavioural challenges’ (i.e. heads on the table or sleep, slide under desks, engage in fights with peers, look outside classroom window, munch on snacks) during class periods. this was supported by student statements in interviews. for example, one participant reported: ‘when i am tired, i sleep in the class when teacher is teaching…so i don’t do my work or sometimes i will do my work after teacher finish teaching.’ (lily, 10 years old, school b) the participants also expressed struggling to maintain attention during class periods, as exemplified in the following quote: ‘i like it when my teacher gives me work in school but when teacher is talking it is difficult to listen and understand so i look in the window and watch the people playing.’ (danny, 10 years old, school c) interestingly, all but one participant blamed the behavioural challenges they experienced on others (i.e. peers and teachers), as noted in the following excerpt: ‘i beat her because she took my pen…she said she will give it to me and she put it there and somebody stole it. i told her to give me my pen but she did not.’ (kofi, 11 years old, school c) the participants were often observed to either have their heads on the table or sliding under desks during assignment writing periods and not completing their assignments. participants who did not complete their assignments sometimes missed out on opportunities to interact with their peers during lunch breaks. for instance, on one occasion, a teacher asked students to visit her desk in turns for an inspection of their assignments and exercise books. she instructed in a loud voice ‘if i do not inspect your exercises you will not step out for break.’ the focus participant in this scenario (evans, 15 years old, school c) put his head on his table, did not submit his assignment and thus remained in his seat as per the teacher’s order, while his peers vacated the class for their break period. despite their learning and behavioural challenges, most participants’ (n = 14) responses showed the value they put on school, their interest in learning and expectations for the future. participants viewed school as necessary for their future successes, achievements and recognition in their respective societies. for instance, one participant noted: ‘i come to school to learn very hard so that when i grow up, i will get work to do and will become somebody in future. when i finish school and they give me certificate i can go to any work and show it to them and they will see that this boy has gone to school… when you stay at home and you don’t go to school, you cannot speak good english and be great in future.’ (eric, 14 years old, school b) in as much as participants perceived being educated in their current schools as critical for their future success, they also expressed concern about academics and their need for additional teacher support. in particular, participants expressed worry about not being able to read, write and understand assignments from their teachers and needing assistance from them as highlighted in the following excerpt: ‘i think this school is good for me…no…i don’t want to go to another school. i want to be here…but i want my teacher to help me with spelling and reading and writing. if teacher helps me i can be able to understand…and write. i like this school…i just want someone to always help me to learn.’ (ivan, 16 years, school d) characteristics at the environment level – macrosystems in this section, we present participants’ experiences as they relate to accommodations and modifications in school and home environments: school environment: with the exception of one participant (vida, 12 years old, school b) whose teacher gave a different assignment (alphabet writing) while other students constructed sentences, there were no explicit modifications and adaptations in instructions, assignments and tests for participants across all observations. for instance, teachers taught for an average of 30 min, followed by a couple of assignments on the board for all students (including participants) to complete within the same duration of time. further, many participants (n = 15) reported using the same materials, textbooks and performing same tasks as other students as exemplified in the quote: ‘madam gives us the same work to do…sometimes we look on the board and sometimes we look in our class three writing textbook but our work is the same.’ (eric, 14 years, school b) across observations, many participants either submitted assignments upon instruction from the teacher to stop work or continued to write while the teacher moved on to another lesson. in many of the observed classrooms, teachers disciplined all students (including participants) who turned in assignments after the stipulated time. for instance, for turning in an assignment late, we observed one participant (kwame, 14 years old, school c) spanked along with other students. in another school and classroom, another participant (pearl, 13 years old, school d) was not allowed to go for lunch break because of not completing their class assignment. additionally, many participants’ desks were found located at the back of the class and out of proximity to their teachers. for instance, on average, a participant’s classroom had five rows of desks with nine desks in each row. many of the participants in this study were positioned from the fifth to the eighth desk on each row of five. to get to the front of the classroom where their teachers sat or stood to teach, participants walked past five to six desks. except for a couple of classrooms that accommodated the exact number of students for its size, we observed that most participants’ classes hosted twice the number of students as there was seating capacity. for instance, one classroom hosted 76 students for a classroom originally designed for 40 students. subsequently, many participants sat in threes at desks designed for two. home environment: some participants talked about receiving support from their families at home relating to completion of homework. in contrast, many other participants (n = 10) perceived their families as unsupportive as they did not receive assistance with homework and completed homework either by themselves or returned the work to their teachers uncompleted. many female participants (n = 6) who indicated not receiving assistance with homework also expressed worry about the requirement to do household chores and its impact on their homework and overall learning. for example, one participant reported: ‘when we are learning my mind doesn’t go to the board…i think about the house because when i go home i will fetch water and wash bowls and if i finish i will go and sell so i cannot do my homework.’ (rose, 14 years, school c) some participants (n = 9) further discussed not receiving the needed resources from their parents relating to schoolwork and activities. for instance, instead of submitting their assignment for the lesson that was a condition to be permitted to go for lunch break, these participants remained in their seats until their teachers left the class. these participants blamed their lack of participation in class activities and assignments on their parents’ or other relatives’ inability to provide the exercise or textbooks required for participation. interactional patterns – microsystems in this section, we present participants’ experiences and perceptions as these relate to their interactions and relations with teachers and peers, also including comments on participation in aspects of school life (i.e. classroom assignments and discussions). teacher interactions: students’ perceptions of their teachers were primarily grounded in perceiving the teacher as someone who gives them assignments in the general education classroom. this was exemplified in the following quotes: ‘my madam gives me work in class and i do it’ (frank, 9 years old, school a), ‘teacher give me plenty work and when i write my hand will be paining me’ (amos, 13 years old, school a). this basic understanding of a teacher’s role is contrasted by one participant who had a much more multi-faceted and nuanced view of her teachers’ role in her education and overall life: ‘my teacher is a good teacher…my teacher loves me …my teacher likes teaching me every day. my teacher know how to teach …if i do something wrong my teacher will beat me and i will correct myself. my teacher shows me what to do and i will do it. in the classroom, my teacher reads to us and will ask us to say poems….sometimes my teacher can play with us and she laugh with me and when we come to the class she will start teaching us. my teacher gives us homework.’ (moonlight, 10 years old, school d) over half of the participants disclosed the deliberate choices they made to avoid attempts at questions their teachers posed in class because of the fear of being teased by peers for wrong answers. ‘when we are in class and my teacher asks a question, i know the answer, but when i say it some people will laugh because my answer is not correct…so i don’t say anything.’ (vida, 12 years old, school a) across observations, we noticed teachers often engaging with students who volunteered to answer questions. interestingly, except for a couple of participants who joined in chorus responses and repetition of phrases and sentences, participants were a part of many other students who neither volunteered to answer questions nor were actively engaged during class discussions. after each lesson that lasted, on average, for 30 to 35 min, teachers put assignments on the board and returned to their desks marking registers and exercises. participants’ interactions with their teachers revealed their perceptions of them as disciplinarians. for example, participants spoke about their teachers as either spanking or raising their voice at them for not satisfying academic expectations and/or engaging in undisciplined acts as exemplified in the excerpt below: ‘when am not able to answer question madam will cane us or when someone answers madam will say the boy who got the answer correct should take the cane and cane the people who are standing and so when i am standing madam will let the boy cane me.’ (kwame, 14 years old, school c) participants’ perceptions of their teachers matched our findings across observations. for instance, in a couple of instances, teachers were observed spanking all students (including participants) who returned to class from break late. peer interactions: many of the participants discussed having cordial and reciprocal relationships with their peers. in particular, participants shared that they loved their peers, playing and working together with them on tasks and extracurricular activities: ‘we love each other…if i am holding something i will give my friends and if they are also holding something they will give me. i do my work with my friends when i come to school, i learn with my friends…we play ball together and at break time… we ran on the park and then we go home together at closing time.’ (eric, 14 years old, school b) many participants (n = 13) acknowledged receiving assistance from their peers as it related to classroom assignments as exemplified in the following quote: ‘sometimes when we go for break and everyone leaves the class, my friend nat will be with me in the class and i will ask her to teach me. if madam ask me to say something and i don’t know i can tell my friend andy that…oh andy this question madam asks i don’t know so please teach me and he will teach me.’ (kwame, 14 years old, school c) much of the time, we observed that participants receive assistance from their peers without disabilities on class assignments, and walk out for break and also travel to their homes with their peers without disabilities. in one instance, a child without disability spent about 25 min helping a participant (vida, 12 years old, school a) with an assignment. across observations, we found many participants sharing desks with their peers without disabilities which allowed for easy and sustained interactions between them. for instance, we identified at least one peer interaction between a participant and their peer without a disability in each of the classrooms in the four sampled schools. beyond academics, one participant indicated receiving monetary assistance from her peers: ‘if i don’t have class fees, some of my friends will pay for me, they will pay for me [class fees] cost two ghana cedi’s and sports is one cedi [equivalent to cad 1].’ (rose, 14 years old, school c) in spite of positive peer interactions, the issue of bullying was also raised by many participants (n = 13) who complained and expressed concern about their peers without disabilities who are either hitting, teasing, insulting or falsely accusing them. for example, one participant reported: ‘they insult me…they are in the class…they beat me…they don’t like me at all…they say that i am dirty and i don’t like dressing…they said my face is like someone who do not speak well. they can insult me that i don’t know anything… they open their mouth to say things that does not make me happy in the class.’ (ida, 13 years old, school a) one observation documented that a participant was hit in the back for reasons the culprit was unable to explain to the teacher. interestingly, one participant reported also being bullied outside school hours: ‘one time one girl started insulting me and she hit me…she said if we close the school she will beat me…so at closing time she hit me and was laughing at me.’ (ivy, 13 years, school d) discussion we have presented the main findings of the data from our study that sought to understand the experiences of children with idd in inclusive schools in accra, ghana. we identified three major themes along three levels of bronfenbrenner’s bioecological theory of human development that shape the experiences of children with idd in inclusive schools. these are individual characteristics at the biosystemic level, environmental factors at the macrosystemic level and interactional patterns at the microsystemic level. specifically, we found that personal characteristics (i.e. behavioural challenges), immediate environments (school and home) and occurrences and interactions within these environments influence children’s experiences in inclusive schools. at the microsystemic level, we found that children with idd benefitted from peer relations and received support with classroom assignments and travelling to and from school. this finding is consistent with previous studies that have established peer support as beneficial to the academic achievements and social and emotional well-being of children with disabilities (carter et al. 2005; franck & joshi 2017). specifically, these studies found that educating children with disabilities in inclusive schools provided the opportunity for them to interact and partner with their peers without disabilities on classroom assignments and in travelling to and from school, which also contributed to improving their academic and social interactional skills. although participants benefitted from peer support, they were also subjected to verbal and physical abuse by their peers without disabilities during and after school hours. the victimisation of children with disabilities and particularly those with idd is a persistent social challenge consistent across different countries. for example, in a study in zimbabwe, majoko (2016) identified peer bullying and victimisation as a major social barrier to the inclusion of children with idd. participants in this study also reported that teachers were not responsive to complaints relating to incidences of bullying and victimisation. this confirms research showing that general education teachers view children with idd with scepticism and act in an unresponsive manner towards their needs because of the child’s behavioural challenges (lifshitz, glaubman & issawi 2004). it is noteworthy that children with idd in general education classrooms are at higher risk for victimisation than their counterparts in segregated special schools. studies have confirmed that compared to other students without disabilities and their counterparts with other forms of disabilities, children with idd often experience the highest rates of bullying and victimisation in the general education classroom because of factors including behavioural challenges and lack of social skills (fisher, corr & morin 2016; sreckovic, brunsting & able 2014). despite peer victimisation, our study suggests an overall positive peer interaction in the general education classroom, indicating that there is no one homogenised narrative of inclusion. therefore, an in-depth exploration of peer support and victimisation is important for effective inclusive practice. specifically, future studies should explore potential strategies that can build upon peer support and develop targeted interventions that can be implemented to control the victimisation of children with idd in general education classrooms. there is a great need for this research, as peer victimisation often results in negative outcomes for students with idd, including increased behavioural challenges and school dropout (sreckovic et al. 2014). many female participants in this study expressed concern about unsupportive microsystems, and specifically the negative impact of multiple household chores on their school attendance, concentration in class and overall academic competence. participants discussed feeling tired from tasks such as fetching water, cleaning and selling for their parents resulting in low academic performance. this finding is consistent with research in similar lowand middle-income countries that found girls, without consideration of disability, underperform in school because of multiple chores (assaad, levison & zibani 2010). this study demonstrates that girls with disability are not exempted from the burden of household responsibilities, and indeed, gender seems to be the barrier in this example rather than disability. girls and women in ghana are often culturally perceived as primarily responsible for household chores and are often engaged in multiple household chores including cooking (naami 2015). further, cultural beliefs and practices within the country privilege boys over girls and thus prioritise their education over their female counterparts (naami 2015). compared to their male counterparts, females with disabilities experience multiple forms of discrimination on account of gender and disability (naami 2015). subsequently, females with disability are considered a double liability, with often fewer educational opportunities (i.e. low enrolment) and low employment rates (world health organization & world bank 2011). understanding gender disparities relating to cultural beliefs, attitudes and practices is important for informing best approaches that place priority on females with disabilities as they relate to education support. this is significant to supporting female educational development in countries such as ghana, where cultural beliefs and practices raise gender issues that impact educational and employment outcomes (tuwor & sossou 2017). future research should explore targeted interventions that can be enacted to protect girls from uneven distribution of household chores and advance their educational development and employment outcomes. it is widely accepted that modifications in teaching approaches, curriculum and learning environments are critical for achieving the successful inclusion of children with disabilities, including children with idd (unesco 2005). the academic achievements of children with idd in the general education classroom are dependent on modifications in teaching practices, curriculum provisions and school environments (chowdhury 2011). consistent with previous studies in similar lowand middle-income countries (westbrook & croft 2015), we found no evidence of differentiated instruction, curriculum accommodations and modifications in learning environments at the macrosystemic level. in all participating schools, children with idd used the same materials and performed the same tasks as other students in the same time period. also, the placement of participants’ desks, which put them out of proximity of their teachers, seemed to reduce engagement with them. this is noteworthy as modifications and adaptations in the general education classroom to suit the diverse and unique learning needs and styles of each learner are the underlying principle of inclusive education (adewumi et al. 2014). generally, teacher and student interaction in school settings across developing countries is low because of large classroom sizes, low wages and the lack of adequate resources and services (masino & niño-zarazúa 2016). however, compared to their peers without disabilities or with physical and sensory impairments, teachers are sceptical towards children with idd and interact less with them (gyimah et al. 2009). this is often attributed to the problem behaviours these children present and the extra instructional skills required to teach them (gyimah et al. 2009). in a recent study that sought to assess the impact of computer technology on the reading abilities of students with intellectual disabilities in south africa, mosito, warnick and esambe (2017) found that computer-assisted learning has the potential to advance the academic achievements of students with intellectual disabilities. our study suggests that inclusive school environments are not accommodating macrosystems for the children with idd. given the importance children in this study attached to education as it relates to future aspirations, there is a need for accommodating macrosystems that differentiate teaching and adapt curriculum to satisfy each student’s unique needs. future studies may seek to understand teacher’s experiences to determine how to improve their capacity to make adaptations to improve inclusive education implementation. further, we recommend that the government of ghana explores the use of computer-assisted learning with children with idd. one finding noteworthy of discussion is the use of corporal punishment in inclusive schools. in both observations and interviews, we found that teachers caned participants for not satisfying academic expectations and/or engaging in undisciplined acts. interestingly, participants revealed that teachers also allowed students who responded correctly to questions to physically punish them for their inability to do likewise. this finding resonates with the study by agbenyega (2006) which also found teachers using corporal punishment in ghanaian schools. the united nations committee on the rights of the child defines corporal punishment as ‘any punishment in which physical force is used and intended to cause some degree of pain or discomfort, however light’ (united nations 2007:4). also, the committee perceives corporal punishment as an act of violence that humiliates and degrades the human dignity of all children. although international human rights organisations have called for an end to corporal punishment, the practice is still prevalent in many lowand middle-income countries including ghana (united nations 2007). in contrast to western societies where the practice has been abolished in school systems (axelrod 2011), corporal punishment is a culturally acceptable and widely employed method of disciplining children in ghana. since its independence, the country has disciplined students using corporal punishment as it is also perceived to motivate learning and train children towards morally upright and responsible adulthood (agbenyega 2006; twum-danso 2013). the corporal punishment used with children with idd in this study may, although equitable, be disproportionally targeted. this is because unlike their peers without disabilities, children with idd are at higher risk of exhibiting problem behaviours (i.e. aggressive and self-injurious behaviours) (ageranioti-bélanger et al. 2012) and may be more prone, because of differences in ability, to perform below expected standards. this study shows that although children with idd have access to inclusive educational opportunities, they are subjected to humiliating school environments or macrosystems, which is a disincentive to their participation and likely to impede their academic and social achievements. furthermore, as inclusion aims to provide environments supportive of diverse learners (ainscow & sandill 2010), inflicting corporal punishment on children with idd in these settings raises questions concerning stakeholders’ (i.e. teachers, school heads and governments) understanding of disability, inclusion and their willingness to include these children. although ghana has engaged in discussions around prohibiting corporal punishment, the practice persists in many schools across the country as recommendations have not been clearly enacted into laws (global initiative to end all corporate punishment of children 2017). as earlier noted, this contrasts with western societies where corporal punishment has been abolished in school systems (axelrod 2011). empirical evidence indicates corporal punishment as detrimental to the health, emotional and psychological well-being of all children (gershoff 2010; talwar & carlson 2011). thus, there is the need to support rather than punish children with idd for their differences in the inclusive classroom. the government of ghana must review policies to eliminate the use of corporal punishment on all children in school settings across the country and integrate monitoring and evaluation systems that reprimand educators for the practice. consistent with previous research in similar lowand middle-income countries, some participants discussed their family’s lack of engagement with their education. at the microsystemic level, researchers have attributed family non-involvement and support in the education of their children with disabilities to factors including poverty, lower levels of education and absence of partnerships between key stakeholders such as families and teachers in inclusion (mapuranga, dumba & musodza 2015). although this study demonstrates that there is more room for improvement as it relates to teachers implementing inclusion best practices, it is important to note that one key best practice for inclusion is that it requires a systematic effort involving multiple and diverse stakeholders at various levels of bronfenbrenner’s theory in order to be successful (majoko 2016). given that the findings also indicated minimal involvement of families in the education system, one potential opportunity for growth would be to explore family–professional partnerships within the education system. family–professional partnerships have been recommended as an appropriate strategy to: (1) educate and empower both families and professionals and (2) build substantial and trusting relationships between them as it relates to the inclusion of children with disabilities (beneke & cheatham 2016). thus, it is an important area that needs to be explored in future research in countries such as ghana where there is minimal family involvement and collaborative partnerships with professionals and, specifically, teachers in inclusion (kuyini et al. 2016). in addition to families, there is the need for a greater systematic involvement of stakeholders, such as governments, school heads and directors, in the inclusion of children with idd. limitations this study was not without limitations. firstly, because of limited time and resources, children with idd who participated in this study were selected from four schools in one urban district of the country’s capital that has well-resourced schools compared to rural settings. as inclusive education is practised in other districts, future studies should explore the experiences of children with idd from other districts in the country where inclusion is practised. also, selection bias may have been introduced into this study as the district inclusive education team were largely involved in the recruitment of children with idd. finally, despite efforts to include children with all levels of idd in the study, all participants were in the mild to moderate range of idd. additional research that explores the experiences of children with severe to profound idd is needed in order to facilitate a broader view of the issue. conclusion in this article, we explored the experiences of children with idd in inclusive schools in accra, ghana. we sought to document children’s experiences using classroom observations and interviews. although participants seemed to benefit from opportunities in inclusive schools, including receiving peer support in learning, they also experience many challenges in learning. the study suggests an overall stressful classroom environment because of large classroom sizes and inadequate supportive measures and resources which makes it challenging for teachers to respond to the additional needs of children with idd. the study also suggests absence of parental and governmental support in the inclusion of children with idd. this demonstrates the need for multiple stakeholder action to improve inclusive best practices for children with idd in ghana. a commitment of all stakeholders to address the challenges experienced by teachers in inclusive schools would be an important step towards ensuring the full and successful inclusion of all children in inclusive schools in accra, ghana. acknowledgements the authors are sincerely grateful to dr elaine power for her insights on earlier drafts of this article. they also acknowledge the queen elizabeth ii diamond jubilee scholarship as the lead author is a recipient of this award. competing interests the authors report that they have no financial or personal relationship that may have inappropriately influenced them in the writing of this article. authors’ contributions c.o. is the primary author. she was responsible for obtaining ethical approvals, collecting and analysing the data and writing the initial draft of the manuscript. h.m.a. is the second author and primary supervisor of c.o. on a biweekly basis and via skype meetings, h.m.a. provided substantial feedback that guided c.o. throughout the data collection process. h.m.a. jointly analysed the data with c.o. and provided substantial feedback on the first draft of this manuscript. r.l. is the third author and secondary research supervisor for this project. r.l. was responsible for providing initial ideas on methods, theoretical framework and analysis for the manuscript. she also provided substantial feedback that strengthened the initial drafts of the manuscript. funding this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references adderley, r.j., hope, m.a., hughes, g.c., jones, l., messiou, k. & shaw, p.a, 2015, ‘exploring inclusive practices in primary schools: focusing on children’s voices’ european journal of special needs education 30(1), 106–121. https://doi.org/10.1080/08856257.2014.964580 adewumi, t.m., rembe, s., shumba, j. & akyinyemi, a., 2014, ‘adaptation of the curriculum for the 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j. & croft, a., 2015, ‘beginning to teach inclusively: an analysis of newly-qualified teacher pedagogy in lower primary classes in tanzania’, teaching and teacher education 51, 38–46. https://doi.org/10.1016/j.tate.2015.05.003 world health organization & world bank, 2011, world report on disability, viewed 07 october 2016, from http://www.who.int/disabilities/world_report/2011/report.pdf. zachary, r., donna, l., shouz, h., ghai, j. & harayama, n., 2016, ‘parent and teacher perspectives on friendships and social interactions of secondary students with intellectual and developmental disabilities’, inclusion 4(4), 239–256. https://doi.org/10.1352/2326-6988-4.4.239 abstract introduction lesbian, gay, bisexual, transgender, intersex and questioning+ study context research methods and design results discussion conclusion acknowledgements references about the author(s) ikekhwa a. ikhile department of gender and sexuality studies, college of human sciences, university of south africa, pretoria, south africa azwihangwisi h. mavhandu-mudzusi college of human sciences, university of south africa, pretoria, south africa ndlovu sinegugu college of human sciences, university of south africa, pretoria, south africa citation ikhile, i.a., mavhandu-mudzusi, a.h. & sinegugu, n., 2024, ‘addressing unique challenges and crafting inclusive policies for queer living with disabilities’, african journal of disability 13(0), a1418. https://doi.org/10.4102/ajod.v13i0.1418 original research addressing unique challenges and crafting inclusive policies for queer living with disabilities ikekhwa a. ikhile, azwihangwisi h. mavhandu-mudzusi, ndlovu sinegugu received: 26 feb. 2024; accepted: 01 july 2024; published: 30 sept. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: this article addresses the intersectional challenges faced by queer people living with disabilities (qpwd). objectives: the article aims to highlight the nature and extent of their struggles while proposing inclusive policies for societal integration and equality. amid global efforts to promote queer rights, discrimination and violence persist, particularly affecting those with disabilities. method: drawing upon a comprehensive review of literature and empirical research, this study investigated the experiences of qpwd, identifying key challenges such as limited access to inclusive services, heightened vulnerability to abuse and systemic unemployment. the methodological approach used in this study involves synthesising existing scholarship and empirical evidence to inform the proposed inclusive policies. results: the findings reveal pervasive barriers encountered by qpwd, including societal stigma, attitudinal biases and physical obstacles. discrimination in employment, education and healthcare further exacerbates their marginalisation, necessitating proactive measures to address systemic inequalities and promote social inclusion. conclusion: in conclusion, this article underscores the urgent need for policy reforms and societal interventions to uphold the rights and dignity of qpwd. by advocating for queer-inclusive workplace policies, enhancing accessibility in public infrastructure and fostering governmental support for equality initiatives, this study contributes to advancing social justice and inclusivity. contribution: the article calls for concerted efforts to create a more equitable and inclusive society where all individuals, regardless of their sexual orientation or disability status, can thrive and fulfil their potential. keywords: intersectionality; queer individuals living with disabilities; inclusive; challenges; policies. introduction while the exploration of intersectional identities is increasing, there remains a scarcity of published studies examining the experiences of individuals who identify as lesbian, gay, bisexual, transgender, intersex and questioning (lgbtiq) and live with disabilities. in this article, we will refer to this population as queer people living with disabilities (qpwd). this study is a qualitative investigation utilising secondary data to explore the personal experiences of persons who identify as members of the qpwd. the study examines numerous aspects of the lives of individuals with disabilities, including their perspectives, experiences with discrimination, educational and career aspirations, financial problems, physical and psychological health, social support networks and intimate relationships. this analysis is based on a comparison of multiple secondary research findings. to contextualise our examination, it was imperative to delineate the overarching challenges and encounters faced by the study population. modern society mostly follows norms that favour people who are heterosexual and physically able. this means that anyone who does not fit these norms, including those with different sexual orientations, gender identities or people without disabilities, often face being left out or treated unfairly (chappell 2015; egner 2019; wellard 2006). within this paradigm, individuals identifying as qpwd find themselves situated within stigmatised minority groups (miller 2018). the confluence of these intersecting identities amplifies the experiences of marginalisation and discrimination encountered within both queer and disability communities. therefore, comprehending the intricate tapestry of experiences among this target population necessitated an exploration of intersectionality, acceptance dynamics within queer and disability spheres and the journey towards self-acceptance and identity actualisation. by embracing the complexities of societal norms and individual identities, scholars and practitioners can work towards cultivating more inclusive environments and robust support systems for qpwd. individuals with disabilities encompass a diverse spectrum of sexual orientations, spanning from heterosexual to queer identities; yet, their experiences within the queer community often remain overlooked and marginalised (ramasamy, rillotta & alexander 2021). this nuanced intersectionality intertwines common challenges encountered by the broader queer population, including bullying, abuse and the complexities of navigating acceptance amid societal heteronormativity and ableism (smilges 2022). bullying, a pervasive issue among individuals with disabilities, often intersects with experiences related to sexuality and gender expression, manifesting in verbal abuse, threats of violence and physical assault (dinwoodie, greenhill & cookson 2020). such maltreatment perpetuates stigmatisation rooted in ableism and heteronormative assumptions, exacerbating segregation and impeding access to fulfilling life opportunities (tan & saw 2023). this culture of exclusion reverberates across public spaces, including governmental and non-governmental organisations tasked with serving individuals with disabilities (tan & saw 2023). acknowledging the importance of safe spaces, queer support groups emerge as vital institution where individuals with disabilities can explore their identities, foster connections and integrate into supportive communities (bates 2018). lewis and herman’s (2022) study underscores the transformative impact of support groups, illuminating how such environments empower individuals to cultivate self-affirmation and extend support to others, thereby nurturing resilience and collective solidarity. in synthesising these dimensions of intersectionality, it becomes evident that the experiences of qpwd are multifaceted and demand nuanced policy responses and social interventions. by amplifying the voices of marginalised communities and fostering inclusive environments, we endeavour to dismantle systemic barriers and cultivate a society where diversity is celebrated, and all individuals, irrespective of their abilities or sexual orientations, are afforded dignity, respect and equitable opportunities for fulfilment. lesbian, gay, bisexual, transgender, intersex and questioning+ study context the acronym ‘lgbtqi+’ (lesbian, gay, bisexual, transgender, questioning, intersex plus) is a condensed form of commonly used terms that pertain to sexual orientation and gender identity. the investigation of gender and sexual orientation may be historically linked to the 1950s, when the labels ‘lesbian’ and ‘gay’ were coined to refer to individuals who do not identify as heterosexual. subsequently, the terms ‘bisexual’, ‘transgender’, ‘queer’ and ‘intersex’ were included in the acronym with the purpose of promoting opposition to homophobia. the plus sign denotes the incorporation of additional non-binary distinguishing identities that are not explicitly mentioned in the abbreviation. despite the promotion of diversity in academic discourses around gender and sexual orientation, stigma and prejudice continue to exist within the lgbtqi+ community. mavhandu-mudzusi et al. (2023) conducted a study to determine the preferred terminology for addressing lgbtqi+ individuals, with ‘queer’ emerging as the majority preference. as a result, the specific population is referred to as qpwd in this article. disability study context the united nation convention on the rights of persons with disabilities defines disability as long-term physical, mental, intellectual or sensory impairments (guide 2014). when combined with additional difficulties, these limitations may prevent people from participating fully and equally in society. disability comprises several conditions, each with its own issues and peculiarities, creating various disability communities. based on this study, the secondary research data gathered focusses on individuals with any physical disabilities who identify as queer. intersectionality in a south african context in the south african context, intersectionality illuminates the intricate dynamics of belonging to multiple identities and social groups (maxwell et al. 2016). rooted in black feminism, intersectionality underscores how various forms of oppression, including gender, sexual orientation, race, religion, national origin and class, intersect to shape the experiences of individuals within marginalised communities (nash 2011). collins and bilge (2020) emphasise the significance of examining intersectionality not only in terms of its impact on individual self-perception but also in understanding its role in perpetuating power imbalances and inequalities. being situated at the intersection of multiple stigmatised identities, unveils the challenges of deviating from normative standards and navigating layered oppression. south africa qpwd encounter multiple systems of inequality, such as ableism, homophobia, heterosexism, classism, racism and ageism (richardson & monro 2017). for example, lesbian women with disabilities may face negative attitudes regarding both their sexual orientation and disabilities, leading to compounded stigmatisation and oppression. queer people with disability confront ableist and heteronormative societal perceptions that often deny or restrict access to their sexual identities. it therefore becomes imperative to comprehend the experiences of qpwd through an intersectional lens to address their unique challenges and needs within the south african context (kempapidis et al. 2023). moreover, negotiating one’s position within both the queer and disability communities pose an additional challenge. individuals with disabilities who identify as queer may struggle to find a sense of belonging within either group, experiencing homophobia within the disability community and disablism within the queer community (leonard & mann 2018). similarly, individuals who are deaf and identify as queer may encounter unique struggles as an ‘invisible’ minority, navigating the complex intersections between the queer and disability communities (miller & clark 2019). drawing upon the concept of intersectionality in south africa, researchers advocate for centring the voices of marginalised individuals and analysing the interplay between individual experiences and larger systems of power and privilege (van herk, smith & andrew 2011). intersectional studies must encompass micro-level experiences while analysing the influence of macrolevel factors such as systems of power and privilege (bayrakdar & king 2023). embracing intersectionality facilitates a deeper understanding of how identities intersect and interact within the south african context, guiding efforts towards social justice and inclusivity. queer people living with disabilities sexuality experiences in south africa, qpwd face a multifaceted landscape shaped by intersecting identities and systemic challenges (msekele 2020). while significant strides have been made in queer rights, including the legalisation of same-sex marriage and constitutional protections against discrimination based on sexual orientation, marginalised communities continue to grapple with entrenched prejudices and structural barriers unique to the south african context. boonzaier and mkhize (2018) affirm that qpwd struggle with navigating the complexities of disclosure and social integration within south africa’s higher education institutions. miller (2018) underscore the challenges of stigma and discrimination, exacerbated by a lack of inclusive policies and support mechanisms. boonzaier and mkhize (2018) further highlight that despite legislative progress, queer students with disabilities often face invisibility and marginalisation, hindering their academic and personal development. the cultural backdrop of south africa reflects enduring norms of heteronormativity and ableism, perpetuating marginalisation and exclusion within disability organisations and institutional settings (smith et al. 2021). despite legal protections, qpwd encounter systemic barriers limiting access to essential services and impede social participation (van der heijden et al. 2020). trans individuals with intellectual disabilities face unique challenges in accessing healthcare and community support, exacerbating feelings of vulnerability and isolation (smith et al. 2021). in response, qpwd demonstrate resilience and agency, challenging societal norms and advocating for recognition of their rights and dignity. initiatives such as queer support groups and advocacy organisations provide vital safe spaces for identity exploration and community-building (bates 2020). the experiences of qpwd underscore the imperative of intersectional advocacy and policy reform. south africa’s national development plan recognises the need for inclusive policies and interventions to address the marginalisation faced by queer individuals. however, implementation gaps and institutional inertia pose significant challenges to realising the plan’s vision of a more inclusive society (dalvit 2022; national planning commission 2012). moreover, south africa’s legal framework for queer rights remains unevenly implemented and subject to political and cultural contestation (lewis 2021). while landmark judgements, such as the constitutional court’s ruling legalising same-sex marriage, signify progress, queer individuals continue to face discrimination and violence in various spheres of life (mkhize & bennett 2020). the experiences of queer individuals with disabilities in south africa highlight the urgent need for intersectional advocacy, policy reform and social transformation. by confronting systemic barriers and fostering inclusive environments, south africa can strive towards a society that embraces diversity, celebrates authenticity and ensures equitable opportunities for all its members. queer people living with disabilities social support experiences navigating the complex intersection of individuals who are queer living with disability, encounter varying degrees of social support that significantly influence their sense of belonging and well-being (drummond & brotman 2014). within south africa’s diverse social landscape, the dynamics of social support for qpwd reflect broader societal attitudes and institutional frameworks. people with intellectual disabilities often grapple with labelling their identities, yet the acceptance and support offered by social groups and support networks can foster discussions around positive aspects of identity and mitigate negative beliefs (tallentire et al. 2020). in south africa, initiatives such as queer support groups and community organisations play a pivotal role in providing safe spaces for individuals to explore their identities and build supportive networks (bates 2020). while digital gadgets hold promise for enhancing social involvement and sense of belonging among individuals with disabilities, significant challenges persist in their accessibility and usability (dinwoodie et al. 2020). in a south african context, disparities in access to technology exacerbate existing inequalities, particularly for qpwd residing in marginalised communities. the cancellation of pride events in the wake of the coronavirus disease 2019 (covid-19) pandemic underscored the profound impact on qpwd, who experienced heightened challenges compared to their counterparts without disabilities (lewis et al. 2017). for many, pride events serve as vital platforms for visibility, community engagement and advocacy, fostering a sense of belonging and empowerment. the absence of such events further marginalised qpwd, underscoring the importance of inclusive strategies in event planning and community organising. moreover, making use of the online channel, such as the virtual pride events, webinars and social media channels, can help to bridge the width created by the cancellation of the physical events. these digital platforms provide qpwds access to alternative spaces for participation, networking and activism, in order to ensure that they remain included and empowered within the lgbtq+ community despite the imposed social barriers caused by the pandemic (ceia, nothwehr & wagner 2021). the intersection of qpwd within south africa’s social fabric reflects broader dynamics of acceptance, visibility and inclusion. despite progress in queer rights, significant gaps remain in ensuring equitable access to social support and community resources for individuals with disabilities. the social model of disability, which emphasises the role of societal barriers in limiting participation and inclusion, underscores the imperative of dismantling systemic inequalities and fostering inclusive environments (oliver 2013). research methods and design this study uses a methodology that involves reviewing secondary articles for an exhaustive examination of the routine life of the qpwd in south africa. the methodology section of the article outlines the approach taken to conduct a review of literature focussing on the daily experiences of adults in south africa who identify as qpwd. the following elements were considered in the methodology: conceptual research approach and rationale a scoping review approach was adopted to comprehensively explore the existing literature on the experiences of adults in south africa who identify as qpwd. this approach was chosen to provide a broad overview of the topic, identify key themes and uncover gaps in the literature. inclusion and exclusion criteria in an attempt to maintain relevance and coherency, the researchers had set out certain principles regarding the inclusion and exclusion of literature on qpwd experiences. these criteria were intended to match our research goals, specifying the inclusion of only the articles that could provide a direct insight into the subject matter. following meline’s (2006) direction, this approach ensures that the scope and research are kept on track. inclusion criteria the study consists of social scientific data that have directly addressed the daily life of the qpwd. these findings would cover the different areas of social life, such as health, well-being, employment, education, discrimination, support and intimate relations. exclusion criteria in order to be relevant to the current legislative state as well as social expectations regarding disability and sexual diversity, articles published before the year 2000 were excluded from consideration. also, articles not in english were dropped because of the language barrier issue. pieces of text that are not available in the whole-text form were also not taken into consideration to make the analysis complete. moreover, articles that addressed only intellectual disabilities were eliminated in order to maintain the focus on the experiences of qpwd across a wide range of disabilities. systematic review process for secondary data on 05 february 2024, the researchers concluded the systematic review process as the secondary data. the authors employed the framework developed by arksey and o’malley (2005) as a reference to conduct a thorough search among the existing literature. this involved a search in established academic databases relevant to both south africa and global perspectives, such as sabinet, scielo south africa, african journals online (ajol), the national electronic library of south africa (nelson), pubmed, embase, psycinfo and social policy and practice. furthermore, the researcher combined the boolean search technique, which was suggested by aliyu (2017), to increase the precision and quality of the literature review process. initially, 210 records were screened by a research assistant based on abstracts and full text. next, after the removal of duplicates and after applying the eligibility criteria a total of 82 articles were excluded. generally, the strategy entailed the use of a scientific system to identify and analyse literature about the life experiences of qpwd in south africa and other parts of the world for a deeper understanding of the issue at hand. for the search and selection process, 128 articles were left, out of which the main domains included health, well-being, employment, education, discrimination, support and intimate relationships of qpwd (brakewood & poldrack 2013). however, the major part of our review focussed on physical disabilities but is definitely aware of the diversity of disabilities and complexities in their experience. despite the fact that certain studies had involved queer individuals with intellectual disabilities, our specialisation was still on physical disabilities. furthermore, we accessed grey literature to dig deeper into the subject through searching of government and charity reports. more information about the process is elaborated in the figure 1. figure 1: selection process steps. thematic analysis the method used in this study to perform thematic analysis included going through the selected articles and extracting patterns and themes concerning the qpwd participation experiences following the guidelines outlined by nowell et al. (2017). as a start, we classified the articles based on the main themes, including social support experiences, sexuality experiences and others. from these groupings, it is possible to identify some commonalities and differences across the studies. this process enabled us to come up with wider concepts that would capture the various challenges facing qpwd. after several debates and revisions, the members of the research team agreed on the major themes that captured the essential evidence presented in the literature. these themes are as shown in table 1. table 1: superordinate themes. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. the article still abides by the ethical principles, which was to justify the referencing and acknowledgement of all sources that were used in the review process (brakewood & poldrack 2013). results this study clarifies the complex and sometimes overlooked issues encountered by south african qpwd (smith 2023). the intersections of sexual orientation, gender identity and disability status were explored to reveal qpwd’s specific discrimination, exclusion and marginalisation (hunt et al. 2006). the findings show that qpwds face double marginalisation, with additional impediments to social inclusion, economic security and access to key resources (johnson & patel 2021). queer people with disability encounter many obstacles that make them more vulnerable to discrimination and social marginalisation, from restricted access to inclusive healthcare and support services to increased school bullying and exclusion (brown & garcia 2020). the study also shows systemic gaps in legal and policy frameworks protecting qpwd’s rights and protections, emphasising the need for more comprehensive and intersectional approaches to address their unique needs and promote equity and social inclusion (gupta & lee 2019). this study analyses data to inform inclusive policies and initiatives aimed at enhancing support for qpwd in south africa and internationally (choudhury, blakemore & charman 2006). double marginalisation the study population both in south africa and other countries encounter additional difficulties because of the overlap of their sexual orientation, gender identity and disability status, which heighten their susceptibility to discrimination, exclusion and violence (bulter & faucault 2009). the research conducted by mafumo (2011) emphasises that persons who possess several marginalisation identities, such as qpwd, face distinct obstacles that cross and amplify, resulting in increased instances of discrimination and exclusion. for example, a queer person with disability may encounter stigma and discrimination as a queer individual and structural obstacles while trying to access healthcare services that cater to their varied needs as someone living with disability (lee & kanji 2017). moreover, conde’s research (2018) highlights the heightened vulnerability of qpwd to hate-motivated violence and harassment as a result of the convergence of their sexual identities. msekele (2020), in her research article called ‘the blind gaze’, vividly recounts the harrowing tale of a young woman named zee, who courageously navigates life as a queer individual living with a disability. zee’s story is one of resilience and adversity, marked by the profound challenges she has faced. tragically, zee was subjected to the horrors of sexual assault not once, but twice, each instance leaving an indelible mark on her life’s trajectory. the first assault occurred when zee was a vulnerable disabled girl, targeted by perpetrators who preyed upon her physical limitations and perceived vulnerabilities. the second traumatic incident occurred later in her life, when zee was targeted specifically for her identity as a queer woman. this dual victimisation underscores the intersecting layers of discrimination and violence faced by individuals such as zee, who navigate the complex terrain of disability and sexual orientation (daigle et al. 2024). in the context of south africa, where zee resides, the scourge of corrective rape looms large, particularly for queer women. this reprehensible practice, fuelled by bigotry and prejudice, seeks to ‘correct’ or punish individuals for their sexual orientation or gender identity. it represents a grave violation of human rights and a stark reminder of the pervasive homophobia and transphobia that persist in society. moreover, zee’s story sheds light on another troubling phenomenon: the fetishisation and objectification of disabled individuals for sexual gratification. some individuals derive perverse pleasure from fantasising about engaging in sexual acts with disabled women, perpetuating harmful stereotypes and perpetuating the exploitation of vulnerable individuals (kim 2014). zee’s narrative serves as a poignant reminder of the urgent need for comprehensive societal awareness, education and advocacy to combat the scourge of sexual violence and discrimination against marginalisation of communities. it underscores the imperative of fostering a culture of empathy, respect and inclusivity, where all individuals are valued and their rights upheld without exception. through collective action and solidarity, we can strive to create a world where stories such as zee’s are not only heard, but met with compassion, justice and support. trani et al.’s (2020) research underscores the pervasiveness of prejudice and bias faced by individuals who identify as both disabled and lgbtq+. this leads to an increased susceptibility to mental health difficulties and exclusion from society. furthermore, casey et al.’s (2019) research highlights the dual, systematic discrimination that qpwd encounter, resulting in significantly elevated rates of unemployment and economic instability. sherry (2004) also recognises the overlapping challenges experienced by qpwd in her research, affirming that difficulties confront universalising norms that marginalise the study population. this study emphasises the immediate requirement for comprehensive and intersectional strategies to tackle the distinct needs experience by qpwd. policy measures and interventions should be based on a comprehensive understanding of the various forms of marginalisation faced by qpwd (zeeman et al. 2019). mulé et al. (2009) further affirm that these measures should prioritise inclusive practices that acknowledge and uphold the dignity and rights of all individuals, irrespective of their intersecting identities. efforts to address prejudice and promote inclusivity must adopt an intersectional approach, acknowledging the interconnectedness of various forms of oppression and striving to dismantle discriminatory structures that perpetuate marginalisation for individuals who identify as queer, disabled or both (thomas et al. 2021). limited access to inclusive and non-inclusive services queer individuals who have disabilities face significant obstacles when trying to access services that are both queer-inclusive and completely accessible, especially in the rural areas of south africa (hunt et al. 2021). the study conducted by nkosi and molebatsi (2019) emphasises the significant inequalities in healthcare availability experienced by people living with disability residing in rural areas in south africa, which are further exacerbated by their sexuality status. the geographic isolation of these areas restricts the access to healthcare facilities and support services, making qpwd particularly susceptible to discrimination and social exclusion (lee & robert 2017). furthermore, research conducted by mckinney and swartz (2020) highlights the widespread discrimination and limited understanding regarding the healthcare requirements of qpwd in south africa. this worsens their difficulties in obtaining suitable care and assistance. these findings emphasise the immediate need for specific governmental interventions and community-led initiatives that aim to improve the availability and inclusiveness of services for qpwd throughout south africa, especially in rural and underserved regions (bragazzi et al. 2023). effective cooperation between government agencies, healthcare providers, advocacy organisations, civil society organisations (csos) and local communities is crucial in tackling these structural obstacles and advancing fair and equal access to vital services for all individuals in the queer community, regardless of their disability status. heightened bullying and exclusion reygan, henderson and khan (2022) affirm that bullying and marginalisation are major, widespread issues faced by qpwd across south africa, with the educational sector being one of the most impacted. studies reveal significantly elevated levels of harassment and bullying encountered by qpwd individuals, who are subject to a greater extent of harassment and bullying than their non-disabled counterparts (commission for gender equality 2015; mafumo 2011). this concerning pattern highlights the immediate necessity to tackle structural problems that contribute to the exclusion of young individuals with disabilities from educational environments. younger qpwd in south africa face substantial obstacles to achieving social integration and academic achievement as a result of the widespread occurrence of bullying and harassment (mafumo 2011). mafumo’s study also emphasises the alarming fact that those with disabilities are more vulnerable to encountering bullying and harassment in comparison to those without disabilities. the ongoing victimisation experienced by students with disabilities contributes to an environment of exclusion and alienation, compromising their sense of safety and well-being within educational institutions. furthermore, the consequences of bullying and exclusion for youth with disabilities go beyond the classroom setting and frequently lead to negative educational results (mafumo 2011). the increased susceptibility of youth with disabilities to bullying and exclusion worsens their sense of social isolation and hinders their scholastic advancement, thus reinforcing cycles of marginalisation and inequity. to effectively tackle the systemic issues of bullying and exclusion faced by queer youth with disability, it is necessary to implement comprehensive interventions that give priority to inclusivity and fairness in educational settings (national council of provinces 2015). young, ne’eman and gelser (2011) highlight the importance for south african politicians and educational stakeholders to give top priority to creating and enforcing thorough anti-bullying policies and providing appropriate support systems specifically designed for children with disabilities and other conditions. in addition, promoting a culture of diversity and acceptance in schools through focussed awareness campaigns and inclusive curricula can reduce the occurrence of bullying and create a more inclusive learning environment for all students, regardless of their sexual orientation or disability status (yell et al. 2016). to create a more inclusive educational environment in south africa, it is important to recognise the intersectionality of queer identity and disability (reygan et al. 2022). by actively addressing the systemic obstacles that queer youth with disability encounter, government through the basic and higher educational departments should promote a safe and supportive space where all students have the opportunity to learn and succeed, while also respecting their dignity and rights. economic insecurity and employment discrimination studies have shown that qpwds in south africa have significantly higher levels of joblessness and face discrimination in the workplace, which worsens their financial instability and perpetuates patterns of exclusion (casey et al. 2019; national council of provinces 2017): they denied me of the position i qualified for because i was black, disabled and a queer family. reygan et al. (2022) the preceding quote exemplifies the deep-seated intersectional discrimination encountered by an individual, who was denied a position they were qualified for based on their race, disability and sexual orientation. this highlights the structural obstacles present in job sectors where there is a convergence of discrimination based on race, disability and sexual orientation. this individual’s experience underscores the imperative for implementing comprehensive anti-discrimination rules and inclusive practices in workplaces to guarantee equitable opportunities for all persons, irrespective of their ethnicity, disability status or sexual orientation. this form of discrimination not only denies individuals their deserved rights and access but also shows continuous patterns of marginalisation and exclusion, impeding progress towards achieving diversity, fairness and inclusivity in our society (steyn et al. 2020). several studies have revealed significant discrepancies in employment rates between individuals with disabilities and those without, underscoring structural obstacles that impede the access of qualified qpwd to meaningful job prospects (casey et al. 2019; clare 2015; meyer 2003; müller & daskilewicz 2018; porter 2023; samuels 2003). some barriers to equal opportunities for qualified qpwd in accessing meaningful job prospect in south africa are a lack of access ramps in business and transportation facilities (ned & lorenzo 2016). discrimination at workplaces and unfair treatment of employees with disability and negative attitudes towards disability and genderism are still a reality (marumoagae 2012). thus, the problem is worsened by the low rate of employment equity legislation implementation (oosthuizen & naidoo 2010). furthermore, inadequate accessible education and few vocational programmes hinder skills acquisition (mutanga 2017). in the south african context, disability is often combined with other forms of oppression, including race and gender, which exacerbates these barriers (moodley & graham 2015). discriminatory practices towards marginalised individuals with disabilities, different sexual orientations, and diverse gender identities can never be over emphasised (national council of provinces 2017). the study conducted by garofalo (2011) emphasises the widespread occurrence of workplace discrimination faced by individuals with disabilities, emphasising the necessity of comprehensive governmental measures to tackle systemic inequalities. coulter-thompson et al. (2023) also affirmed that the combination of disability and queer identity in south africa creates additional difficulties for qpwd when it comes to accessing jobs and support services. the presence of discriminatory employment practices and workplace conditions escalate obstacles to economic involvement for individuals with disabilities, hence increasing their susceptibility to poverty and social exclusion (garofalo 2011). in order to tackle the widespread issues of unemployment and employment discrimination faced by qpwd, it is crucial to make focussed and collaborative endeavours to encourage inclusive recruitment practices, deconstruct discriminatory laws and improve the availability of vocational training and support services (carew et al. 2020). in progressing towards a more equitable and inclusive society, south africa can prioritise the economic empowerment of qpwd and promote inclusive workplaces that acknowledge and accept varied abilities and identities (mckinney desposito & yoon 2020). intersectional discrimination in healthcare the struggle against structural barriers that hinder better access to health services for the queer community in south africa is still a reality (daigle et al. 2024). queer people living with disability in south africa encounter substantial challenges in accessing inclusive and competent healthcare services, exacerbating existing health disparities and perpetuating cycles of marginalisation (rohleder et al. 2018; watermeyer et al. 2018). discriminatory practices and attitudes within healthcare settings further marginalise qpwd, hindering their access to quality healthcare and support services (watermeyer et al. 2018). research indicates that qpwd often face neglect of their specific healthcare needs because of the intersectionality of queer identity and disability (rohleder et al. 2018). this neglect exacerbates health disparities and contributes to the disproportionate burden of illness experienced by qpwd (watermeyer et al. 2018). additionally, stigma and discrimination within healthcare settings deter qpwd from seeking timely and appropriate care, further exacerbating health outcomes (rohleder et al. 2018). the intersectional nature of queer identity and disability underscores the need for tailored and inclusive healthcare services that address the diverse needs and experiences of qpwd (watermeyer et al. 2018). comprehensive training programmes for healthcare providers on lgbtq+ cultural competency and disability awareness are essential to mitigate discriminatory practices and improve the accessibility of healthcare services for qpwd (rohleder et al. 2018). furthermore, policy interventions aimed at promoting the rights and inclusion of qpwd in healthcare settings are imperative to address systemic barriers and ensure equitable access to healthcare services (watermeyer et al. 2018). by prioritising the development of inclusive healthcare policies and fostering environments that respect and accommodate diverse identities and abilities, south africa can advance towards a more equitable and inclusive healthcare system. legal and policy frameworks the study revealed substantial gaps in the existing legal and policy frameworks concerning the rights and safeguards of qpwd in south africa (davis 2019; watermeyer et al. 2018). although there are laws in existence to combat discrimination based on sexual orientation, gender identity and handicap status, their effectiveness is hindered by gaps in the enforcement mechanisms and implementation (davis 2019). existing anti-discrimination laws are inadequate in protecting persons with disabilities from intersectional discrimination, putting the affected parties in a precarious position of exclusion (watermeyer et al. 2018). a failure of legislation to provide special provisions for disability-related barriers perpetuates disparities as well as impacts the advancement of integration and equity for those with a disability (davis 2019). enhancing the legal frameworks and promotion of policy change are ways to combat the multiple layered discrimination experienced by persons with disabilities in south africa (watermeyer et al. 2018). it is hence important for effective implementation of existing laws and policies, to also have strong enforcement measures and prevention measures against systematic discrimination (davis 2019). south africa stands as one of the few countries in africa where same-sex marriage has been legalised, yet queer people continue to be discriminated against and stigmatised. these social attitudes greatly affect the adoption and acknowledgement of such policies aimed at enhancing their rights (sichinga 2022). government agencies, csos and disability and sexuality rights activists need to work together to advocate for the rights and needs of qpwd and spur policy development (watermeyer et al. 2018). to work towards the transformation of south africa to a more equal and just society, emphasis should be placed on the enhancement of legal and policy frameworks that will accommodate the multiple dimensions and needs of qpwd. this study reveals important implications for recognising the imperativeness of diversified and comprehensive solutions to support qpwd who confront specific obstacles. it states that understanding multiple types of discrimination and exclusion will allow different interested parties within and outside the framework of institutions to come up with equitable and inclusive initiatives. therefore, initiatives should strive at promoting and protecting the rights and human dignity of every person without discriminating against the lesbians, gays, bisexuals, transgender persons, and persons with disabilities. key stakeholders in this process include: healthcare professional and providers civil society organisations government and/or policymakers educators community leaders and members. it is therefore important that these groups engage in collaborative action to bring about change and promote a more inclusive society for qpwd. discussion this study presents important recommendations derived from the various reviewed articles with a focus on qpwds. the process followed a systematic review of literatures across academic databases, screening of articles and then developing a thematic analysis. through this process, key hindering factors that impact negatively on qpwd were identified, which then gives room for the development of conforming policies. the recommendations in this study are supported by data and articulate the multifaceted needs of qpwd, thereby leading to improved inclusiveness and support within society. key recommendation that were generated from the reviews based on the study findings are as follows: policy reform for inclusive healthcare as supported by switzer (2003), policymakers must give priority to the creation and execution of healthcare policies that are inclusive and specifically cater to the distinct requirements of qpwd. this includes the promotion of accessibility to healthcare practitioners who are knowledgeable and skilled in lgbtq+ healthcare, the education of healthcare professionals on inclusive approaches and the eradication of discriminatory practices within healthcare environments. promotion of inclusive employment practices promoting inclusive employment practices is crucial to combat employment discrimination experienced by qpwd. policymakers and businesses ought to enforce anti-discrimination policies, offer appropriate accommodations and cultivate inclusive workplace cultures that embrace diversity and advance fair opportunities for individuals with disabilities in the workforce (priola et al. 2014). social support networks and community engagement establishing community-based projects and support networks is crucial for providing social support and promoting inclusion for individuals with disabilities (duggan & linehan 2013). these programmes can enhance peer support, foster social connections and address the stigma and discrimination faced by those with disabilities in their communities. education and awareness programmes education and awareness initiatives should be established to foster comprehension and embracing of intersectional identities, encompassing queer and disability identities (egner 2018). these programmes can be introduced in educational institutions, professional environments and community venues to confront preconceived notions, promote understanding and cultivate inclusive mindsets towards individuals with disabilities. collaborative advocacy efforts it is crucial to promote collaboration among queer rights organisations, government, disability advocacy groups, policymakers and community stakeholders in advocacy endeavours. through collaboration, these groups may enhance the influence of qpwd, champion policy reforms and facilitate structural transformations that support the rights and integration of qpwd in the society (brubaker, harper & singh 2011). research and data collection research and data collection are crucial for gaining a more profound comprehension of the complex issues faced by qpwd and for guiding policy and practice based on solid facts (dinwoodie et al. 2020). allocation of funding should prioritise research programmes that specifically address the experiences and needs of those who identify as qpwd, with an emphasis on incorporating various perspectives and real-life experiences. empowerment and self-advocacy development of empowerment and self-advocacy programmes is necessary to provide qpwd with the necessary knowledge, skills, and resources to effectively advocate for their rights and fight against intersectional discrimination (dowse 2001). these programmes offer specialised training in self-advocacy, leadership development and empowerment tactics that are customised to meet the specific requirements of those who identify as qpwd. to foster greater inclusivity and fairness for queer individuals with disabilities, policymakers, advocacy groups, government, cso and community stakeholders should adopt these essential suggestions. this will contribute to the promotion of social justice and the advancement of human rights for all individuals, irrespective of their overlapping identities. conclusion to summarise, this study provides insight into the overlapping difficulties encountered by qpwd in south africa and emphasises the immediate requirement for focussed interventions to tackle their distinct needs and experiences. by examining factors such as healthcare accessibility, employment bias, school bullying, exclusion and legal gaps, it becomes clear that individuals with disabilities confront complex discrimination and marginalisation. the findings expose structural obstacles that impede the social integration and welfare of qpwd, underscoring the necessity for extensive legislative overhauls and community-driven initiatives. to effectively tackle the various types of discrimination experienced by those with disabilities, a comprehensive strategy is needed that places emphasis on inclusiveness, fairness and societal fairness. essential suggestions involve creating and executing comprehensive policies that acknowledge and tackle the overlapping identities and requirements of individuals with disabilities. improving legal safeguards, expanding access to comprehensive healthcare treatments and advocating for inclusive educational settings are crucial measures for promoting social inclusion and equity for qpwd in south africa. moreover, it is essential to have cooperative endeavours among government agencies, csos, and disability rights activists in order to champion the rights and interests of those with disabilities and to bring about significant policy transformation. to evolve towards a more inclusive and equitable society, south africa can prioritise the establishment of comprehensive legal and policy frameworks that acknowledge and tackle the overlapping identities and needs of qpwd. this study highlights the significance of acknowledging and dealing with the overlapping types of discrimination experienced by qpwd in order to promote a society that respects the dignity, rights and welfare of all individuals, irrespective of their sexual orientation, gender identity or disability status. by implementing coordinated endeavours and fostering collective participation, south africa has the potential to establish a path towards a future that is more inclusive and fairer for qpwd, thereby creating a society that embraces diversity and enables the flourishing of all individuals. acknowledgements the authors would like to thank the whole research team for engaging in such a review with passion and commitment. contributions of all the members were substantial in achieving this study’s goals. the devotion of the team to the cogency and accuracy of our results guaranteed the quality and integrity of our findings. the authors would also like to thank them for their collaboration and support during the research process, which extends from the steps of literature search to data analysis. they appreciate all the team members for their unending dedication to the growth and development of the knowledge in this field. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions i.a.i. spearheaded the article writing effort. n.s. aided in choosing appropriate articles. a.h.m.-m. mentored the team throughout the process of development. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability the data used in this article were collected from public domain sources including scientific journals and databases which are clearly cited. all citations in the article can be traced down in either the cited journals or databases. disclaimer 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research, faculty of humanities, university of cape town, cape town, south africa elena de palma department of integrated health, assistance and social security system, italian national institute of statistics, rome, italy citation schneider, m. & de palma, e., 2025, ‘including people with psychosocial disability in statistics: self-report measures for surveys’, african journal of disability 14(0), a1686. https://doi.org/10.4102/ajod.v14i0.1686 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper including people with psychosocial disability in statistics: self-report measures for surveys marguerite schneider, elena de palma received: 15 feb. 2025; accepted: 30 aug. 2025; published: 30 nov. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). a tribute to prof. leslie swartz a person who makes as significant an impact on a field of work as prof. leslie swartz has in disability studies, does so because they are able to see the breadth of a field (or forest) and not focus on only the trees. what prof. swartz understood from the start is the importance of measurement in disability and the need for questions that measure what we think they are measuring and hence give us valid and reliable data that can be used for purposes of monitoring inclusion of disability. through this understanding, prof. swartz has provided me (m.s.) with significant support giving me the confidence to pursue it as a relevant area of work. this support was in particular evident when he reviewed my doctoral work as an informal reviewer and helped me clarify the context of what i was writing about in the field of disability measurement. he has provided ongoing opportunities for sharing my knowledge, networking with others and recognition both within and beyond my area of expertise in disability measurement. it has helped me, in turn, contribute as much as i can to the field of disability studies. so, while prof. swartz has not directly contributed to this work on disability measurement, he has, in many ways, contributed to it happening. in writing this paper, i (m.s.) am joined by my washington group on disability statistics colleague, (e.d.p), my partner in conducting this work. introduction background over the last two decades, there has been significant improvements in the quantity and quality of data on disability globally. the ratification of the united nations convention on the rights of persons with disabilities (uncrpd) (un 2007) by 192 countries, as of 2025, has reinforced the importance of monitoring the equalisation of opportunities and reduction in inequalities between people with and without disabilities. this has exponentially increased the demand for disability data. more recently, people with psychosocial disability (psd) have raised their voice in relation to their rights resulting in a growing request for measures that allow for monitoring of their rights. this article addresses how such measures are being developed using the washington group on disability statistics (wg) methodology and presents some of the early indications on the performance of these measures. this ongoing work has been presented at the wg annual meetings by the two authors. some of the material will be the same as presented at these meetings, the proceedings of which can be found at https://www.washingtongroup-disability.com/about/past-wg-annual-meetings/ having a mental health condition (mhc) is generally associated with stigma and negative attitudes leading to discrimination and negative treatment of people with psd (crabb et al. 2012; drake et al. 2011; eaton et al. 2021). people with mhcs face discrimination even in health care settings, receiving poor treatment by non-psychiatric professionals, and therefore limited access to general health care (de hert et al. 2011; isiko, singhani & urkmez 2024; mcintyre et al. 2024). their exclusion is associated with low visibility and a lack of effort to meet their needs that can promote their inclusion. monitoring trends in outcomes in the areas of social, educational, economic and political life of people with psd requires accurate data collected using valid measures that are comparable across countries. such data collected and reported on at regular intervals on national and global platforms, such as the sustainable development goals (sdgs), is one way to increase visibility of people with psd and ensure visible monitoring of their inclusion. the washington group on disability statistics two major issues in disability statistics identified in the 1990s and early 2000s were the high variation in disability prevalence across countries and a lack of uniformity in the measurement of disability (united nations statistical division [unsd] 2001). the work conducted by the wg (see http://www.washingtongroup-disability.com/) since 2002 has greatly improved international data comparability with a change of focus from ‘disability’ to ‘difficulties in functioning’ that people may have. the wg focuses on basic activities or actions as defined by the world health organization’s (who) international classification of functioning, disability and health (icf) (who 2001) in order to ensure cross-nationally comparable data. the questions measure functional difficulties on basic actions that are appropriate to the reference age and not influenced by culture and contextual factors (madans & loeb 2013; madans, loeb & altman 2011). this approach to disability measurement was recognised as appropriate by who and the world bank in the world report on disability (who 2011). the wg is an international city group established by the unsd to address key priorities and recommendations that arose from the un international seminar on the measurement of disability in june 2001 (unsd 2001). it is a voluntary working group made up primarily of representatives of over 130 national statistical offices and including international, non-governmental and disability organisations. since 2002, the wg has developed, tested and adopted several question sets, in line with the icf (who 2001) for the collection of internationally comparable disability statistics. disability data are collected for different purposes and each purpose requires a different data collection approach. the wg chose to develop measures that would allow an assessment of equalisation of opportunities for people with and without disability (madans & loeb 2013). participation restrictions are a key factor in limiting a person with disability in accessing equal opportunities compared to their non-disabled peers. the aim of the measures is to ensure that people who are at risk of experiencing participation restrictions (i.e., respond as having difficulties on the measures) are counted in as ‘with disability’ in national disability statistics. the risk of experiencing participation restrictions is associated with reporting difficulties in the functional domains, and appropriate accommodations are not made. the unsd has recommended the wg measures, specifically the short set (wg ss), as the instrument of choice for measuring disability for disaggregation by, and reporting on, disability for the sdgs (united nations 2017). in addition, a continuum of functioning is reflected in the response options used: ‘no difficulty’, ‘some difficulty’, ‘a lot of difficulty’ or ‘cannot do at all’. this allows for different cut-off points to be applied for different purposes. the un recommends that the cut-off for ‘with disability’ is reporting ‘a lot of difficulty’ or ‘cannot do at all’ on at least one question on the wg ss. a notable feature of the wg approach to measurement and of the who’s icf is the focus on functioning profiles and not diagnosis. functioning is neutral as to diagnosis as the same functioning profile can arise from different medical diagnoses, and the same diagnosis can result in different profiles. functioning profiles can also shift the focus to include not only people’s deficits or difficulties, but to also record their abilities or strengths. a diagnosis does not provide information on a person’s abilities and difficulties. there is a continuum from a full-blown mhc that is clinically diagnosable through to full mental wellbeing with many people experiencing mild or transient mental health symptoms that are not severe enough to warrant a diagnosis. a functioning profile approach reflects this as people without a mhc do report mild difficulties in domains of functioning associated with psd but do not have a clinically diagnosable condition. measuring disability in self-report surveys the measurement of disability in self-report surveys has become a well-established practice with a growing number of countries using the wg ss and wg extended set (wg es) of questions for censuses and surveys, respectively. the domains of functioning measured with the wg ss include vision, hearing, mobility, cognition, self-care and communication. no measure of psychosocial functioning was included as it was not deemed feasible to develop a suitable question that encompasses the multiple aspects such as thoughts, feelings and behaviours that can be universally understood. to address this gap, questions on affect, specifically depression and anxiety, were included in the wg es on functioning tool developed for use in surveys where more questions can be included. the questions ask about feelings of anxiety and depression, which are common mhcs. the rationale is that people experiencing intense and frequent feelings of depression and anxiety are at higher risk of experiencing participation restrictions. the affect questions together with the wg ss may already ‘count in’ a number of people with psd who report difficulties in communication, mobility, cognition, self-care and feelings of anxiety and depression; but many people with psd would not report such difficulties and remain excluded from the statistics and, hence, the monitoring of their inclusion. hence, further questions that address specific aspects of psychosocial functioning are required. to allow for disaggregation of statistics by disability status for all people at risk of participation restrictions, people with psd must be effectively included in statistics identifying the group at risk – that is ‘with disability’. such inclusion will allow further comparative analysis of the living conditions, education and employment status of people with psychosocial disabilities relative to people with physical or sensory disability and non-disabled people (without disability). the wg’s psychosocial disability and mental health workgroup has been working to ensure that relevant measures are developed to improve inclusion of people with psychosocial disability, who are 18 years and older, in data collection. the age cut-off is appropriate as there are questions addressing psychosocial functioning between the ages of 5 years and 17 years in the wg and unicef child functioning module (crialesi, de palma & battisti 2016; loeb et al. 2018). aims this article aims to, firstly, highlight the importance of ensuring inclusion of people with psd in national and global statistics to increase their visibility and ensure that there is monitoring of their level of inclusion. secondly, the article describes the process of developing the psychosocial functioning questions to show the feasibility of ensuring the inclusion of people with psd. measures should be valid, accurate and transparent, as well as internationally comparable. the four cognitive interviewing studies, their methodologies and results are not presented in detail here. the focus of this article is on the process of developing a question set. where relevant, some emerging (but not confirmed) trends are provided to explain the process and show what type of results can be obtained. research methods: the questions’ development and testing process the first step in developing measures of psychosocial functioning is to identify the most common functional difficulties (or activity limitations as defined in the icf) that characterise this type of disability. the second step is to identify questions that measure these functional difficulties, followed by a cycle of testing–adaptation–testing of these questions to establish whether the questions perform as intended in population-based data collection platforms. the question testing methodology used by the wg in developing all question sets includes a series of cognitive interviewing tests and field testing. the cognitive interviewing testing is done in as many languages (with translations) and contexts as possible with ongoing revision of the questions as more data are collected on how they are performing. once questions have been well-tested using cognitive interviewing methodology, a series of field tests are conducted where the questions are asked in a standard self-report survey mode and the data are analysed to confirm if the questions perform adequately. finally, the questions are adopted and circulated for use by statistical offices globally. the question development and testing process included the following steps: (1) a review of the literature to determine the most common activity or functional limitations associated with psychosocial disability and which are already covered by the existing wg questions; (2) developing or identifying existing questions measuring the outstanding domains of functioning and adapting them to the wg format; (3) conducting a series of cognitive interviewing studies followed by field tests (not discussed in this article) with iterative revisions and testing of the questions; and (4) adoption of the questions. each step is described next. identifying the most common functional difficulties associated with psychosocial disability in reviewing the literature, the focus was on identifying the activity limitations commonly associated with mental health conditions that cut across as many different mental health conditions as possible. the disorders considered included anxiety, depression, post-traumatic stress disorder, schizophrenia, schizoaffective disorder, bipolar disorder and major depressive disorder. in searching the databases, the following search terms were used: ((‘mental disorder’ or ‘psychiatric illness’) and (disability or ‘activity limitation’)) with a date limit of 1999–2018. the databases searched included pubmed central (pmc) and web of science core collection. the aim was not to be exhaustive but rather to reach saturation where no additional domains of psychosocial difficulties were identified with new papers. a range of studies were included which (1) identified clear domains associated with psychosocial disability (and not comorbidities) in persons with a mhc from age 18 years and older; (2) represented as wide a range of global regions as possible; and (3) were in a language that the authors could read. studies were excluded if they (1) described the functional status of people with dementia, intellectual disability, alcohol and drug abuse or neurological disorders; (2) were about validation of existing instruments; and (3) had limited or no description of the functional limitations. the literature review identified the following domains of basic activities as being common areas of difficulty for people with psychosocial disability: self-care: for example, washing self, carrying out daily routine of self-care. communication: for example, verbal fluency. memory and thinking: for example, executive function, attention difficulties, verbal and visual memory. mobility: for example, difficulty walking several blocks, climbing one flight of stairs, transferring oneself. social interaction and relationships: for example, difficulty in forming and maintaining relationships, poor communication with family members and neighbours. controlling behaviour and/or emotions: for example, getting upset, conflict with others, misinterpretations, getting violent. of these, the domains of (1) social interaction and relationships; and (2) controlling behaviour and/or emotions were the only ones not included in the wg ss or wg es. hence, they were selected as the domains to focus on in identifying suitable questions. a total of seven questions were identified and adapted to fit the format of wg questions – ‘do you have difficulty … ?’ and using the four response options of ‘no difficulty’, ‘some difficulty’, ‘a lot of difficulty’ or ‘cannot do at all’. cognitive interviewing methodology the cognitive interviewing methodology is used to assess how well survey questions perform when administered to respondents; that is, whether respondents understand the questions according to the intended meaning when developed, and can provide accurate answers based on that intent (miller et al. 2014). this method is about question performance testing. miller et al. (2014) describe this method as useful to evaluate the cross-cultural equivalence of questions and detect any errors that occurred during the translation process from the original language. the method is qualitative using in-depth interviews during which the respondent is asked to either ‘think aloud’ (respondent explains what he or she is thinking while answering the question) or respond to ‘probes’ (respondent answers a series of probing questions posed by the interviewer after answering to the question being tested). purposive sampling is used, ensuring a good representation of the target population. the method is a form of construct validation as it aims to see if the construct being measured is being interpreted as intended by researchers. if it is interpreted ‘in-scope’, the question is deemed to be performing in a valid manner. if respondents give ‘out-of-scope’ interpretations, the question is deemed faulty and revisions are made before testing, or the question is not used further. the objectives of cognitive interviewing testing studies (or question performance testing) are: to assess participants’ interpretation of the questions. to identify potential response problems that could impact data quality. to evaluate the cross-cultural equivalence of the questions. to conclude on the performance of the selected questions and their suitability in ‘counting in’ people with psychosocial disability as having disability. developing and testing the psychosocial functioning measures when conducting cognitive testing studies, the sample is selected in a purposive manner to ensure a representation of different ages and educational background, inclusion of both men and women, and an equal mix of people diagnosed with mhc and those without. the sample size required is between 20 respondents and 40 respondents. all respondents sign consent forms prior to the start of interview process. interviews are conducted primarily in a face-to-face mode, but virtual mode is possible depending on the circumstances. all respondents with an mhc must be in a phase of remission with at most mild psychological symptoms to be able to provide coherent narratives for the analysis. the cognitive interviewing studies conducted to test the psychosocial functioning questions are structured as follows: the respondent is asked the question and gives their response. the interviewer asks the respondent to explain how they arrived at the answer and to provide examples to support their explanation. general (e.g., tell me more) and question-specific probes (e.g., what does ‘getting along with’ mean to you) are used to elicit as detailed narratives as possible. the interview is either recorded or detailed notes are taken with as many verbatim quotes as possible. the process is repeated for each question. as of end of 2024, four cognitive interviewing studies have been completed in: south africa (english), costa rica (spanish), hungary (hungarian) and kenya (english and kiswahili). a total of 106 respondents participated, of which 62 had a diagnosed mhc and 44 did not. analysis the analysis conducted includes identifying (1) the interpretations elicited; (2) any difficulties respondents had in answering the question or using the response options; and (3) determining profiles of responses for people with psychosocial disability compared to those for people without psychosocial disability. inand out-of-scope interpretations the narratives are summarised and a thematic analysis was conducted to identify the interpretations by the respondents. the interpretations are categorised into ‘in-scope’ or ‘out-of-scope’ ones. after the initial cognitive interviewing study, some key themes were identified and used in subsequent studies. additional emerging themes from the subsequent studies were added to the existing themes. we compared the interpretations provided by people with a mhc to those of people without such conditions. difficulties with the questions interviewers answered three questions for each question being tested. these were (1) if the respondent requested repetition of the question or response options; (2) if they had difficulty using the response options; or (3) changed or qualified their responses after providing their narrative. the number of respondents experiencing each of these difficulties were tabulated for each question. profile of responses the responses to the psychosocial functioning questions were tabulated for all the tested questions and compared across the two groups – those with and without a mhc – to determine if there were clear differences in the response profiles. this also showed how many respondents were identified correctly by one or more of the seven questions using the cut-off described earlier. responses of ‘a lot of difficulty’ or ‘cannot do at all’ on one or more of the seven questions identified the respondent as ‘with disability’. responses of ‘no difficulty’ or ‘some difficulty’ identified respondents as ‘without disability’. results the question set seven questions (see box 1) were identified from a number of existing question sets. the who disability assessment schedule (whodas) provided the majority of questions (üstün 2010). these were adapted to fit the wg format using the four response options shown precedingly. this initial set includes some overlapping questions to allow testing of different wordings of questions, before selecting a minimum set of questions to be used. box 1: seven psychosocial functioning questions tested in the cognitive interviewing studies. interpretations of the questions the majority of interpretations by respondents were in-scope. occasional out-of-scope interpretations were noted across all four countries, while some misinterpretation such as narrow or broader interpretations were noted. the out-of-scope interpretations will be tested in future cognitive interviewing studies to determine if they are idiosyncratic or real trends that need to be addressed in the wording of questions. the questions about ‘making new friends’, ‘maintaining friendships’ and ‘controlling behaviour’ or ‘emotions’ highlighted some difficulty on the respondents’ part. for example, a couple of respondents in answering about ‘forming relationships’ considered only romantic relationships or had trouble in deciding who should they consider as friends, or considered ‘controlling behaviour’ in relation to uncontrollable behaviour (e.g., nervous tics). table 1 presents some of the interpretations identified for each question. in general, there was strong overlap in interpretations across the four countries. table 1: examples of interpretations for the seven questions. in general, respondents with a mhc showed the following: difficulties because of anxiety, how people react to them and how they react to others. struggled with reflecting on the questions and their responses. had more negative narratives than respondents without a mhc (expressed many difficulties). reported particular difficulty with controlling emotions and behaviour. reported increased difficulties when experiencing severe symptoms of their mhc. when respondents with a mhc were asked if the questions were sensitive or intrusive, the overriding response was that the questions were sensitive but not intrusive. some respondents found the questions on emotions and behaviour interesting and useful to reflect on. overall, the respondents felt that these questions were important topics to ask about. difficulties with questions a small number of respondents requested for the questions to be repeated, or for the answer categories to be repeated. four respondents with mild intellectual disability requested repetition for more than one question. there were only a few instances where respondents had difficulty in selecting the answer categories. few clarifications were requested. identification of people with and without mental health conditions of the 62 respondents with a mhc condition, 32 were identified by only one question, followed by 8 respondents identified by two questions. none of the respondents with a mhc reported ‘a lot of difficulty’ or ‘cannot do’ on all psychosocial questions. the questions on ‘controlling emotions’, ‘dealing with people you do not know’ and ‘getting along with people close to you’ were the most likely to identify people with a mhc as being ‘with disability’. in contrast, only 6 out of 44 respondents without a mhc were identified as ‘with disability’ by one or more questions. only one reported ‘a lot of difficulty’ or ‘cannot do’ on three questions. this also reflects that people with a mhc were more likely to report more severe difficulties than those without (i.e., reporting ‘a lot of difficulty’ or ‘cannot do at all’), although both groups reported difficulties. this possibly reflects the continuum of mental health in any population. revisions of questions for subsequent testing part of the testing process is to review the questions iteratively and revise according to the findings from each testing. examples of revisions are provided where clear or consistent problems identified with the wording or structure of the questions led to revisions of these questions. there was a consistent link made between controlling emotions and controlling behaviour in all four studies by respondents with and without a mhc. the decision was made to merge these two questions into one resulting in the following question which will be used in the next rounds of testing: do you have difficulty in controlling your emotions or behaviour when you are around other people? in one country in particular, respondents struggled to interpret the notion of ‘new’ friends. the decision was made to revise the question for the next round of testing and potentially take it out completely after that testing: do you have difficulty making friends? the phrase ‘other people’ in the question on ‘forming relationships with other people’ raised issues of interpretation as respondents were not sure who ‘other people’ was referring to, especially as preceding questions asked about ‘people you do not know’. the decision was made to delete ‘with other people’ for the next round of testing: do you have difficulty forming relationships? discussion this article aimed to highlight the importance of monitoring the level of inclusion of people with psd, and to increase their visibility in national and global statistics, for example in disaggregated data from development programmes or quality of life surveys. the good performance of the seven questions so far shows promise for achieving this statistical inclusion and visibility. the article further aimed to show the feasibility of developing measures that are valid, accurate, transparent and internationally comparable. this was demonstrated by describing a relevant methodology that produced results showing similar and good performance of the seven questions across four countries. the results to date suggest that the seven questions meet the criteria of construct validity, accuracy, transparency and international comparability. further cognitive interviewing and field testing are required to confirm these findings and/or further refine the questions and select a minimum set. disability represents a multidimensional and complex construct to measure in self-report surveys. it needs to be disentangled to measure each component correctly. the wg measurement approach focuses on difficulty in doing basic actions to identify people at risk of participation restriction in an unaccommodated environment. once this at-risk group is identified, the data can be compared between those with and without disability across a range of variables, such as employment, school attendance and social inclusion, to measure levels of participation and monitor progress in reducing disparities. addressing psychosocial disability in population surveys is complex, not only because of stigma but also because psychosocial functioning encompasses a number of concepts, including thoughts, feelings and behaviours. the seven questions can address these different aspects by including questions on social interactions and on controlling emotions and behaviour. in addition, the methodology applied in developing the seven questions ensures that transparency is provided in how the questions are tested and adapted based on each round of testing. the findings of these four initial cognitive tests show that there are suitable questions that target specific difficulties experienced by people with psychosocial disability. indeed, response profiles and types of interpretations across the respondents with and without a mhc show that there are clear differences between these two groups, with higher levels of difficulty reported by people with a mhc across all four countries. the willingness and interest of most respondents, both with and without a mhc, highlight the importance of addressing the experiences of people with mhcs. furthermore, the narratives of people with a mhc highlighted the impact of their condition on social interactions and relationships, and how the reaction of other people to their difficulties adds a further burden. thus, the testing process opens a window on the interaction of a person’s impairment with negative attitudes towards mhcs resulting in participation restrictions, such as social exclusion and isolation, and limited access to employment. as the uncrpd makes clear, preventing human rights violations and promoting a rights-based society for people with psychosocial disabilities need accurate data to illuminate their experiences of discrimination and to monitor improvements. given the high level of stigma associated with psychosocial disability, it is even more urgent to ensure that these are made more visible as reflected in the words of one respondent with a mental condition: ‘it’s like a page that no one wants to open’. well-performing questions allow that page to be opened. progress has been made in the development of a set of questions for population surveys; however, defining the minimum set of questions requires further cognitive tests, especially in geographical areas not yet covered, to ensure that the questions are not influenced by cultural and linguistic factors and are interpreted consistently across countries. besides reviewing the wording of the questions being tested, based on the cognitive interviewing test results, a further step is to select a minimum set of three or four questions that can be adopted for use in population-based surveys to measure psychosocial functioning. to complete the question validation process, several field tests must be carried out to verify the performance of the set in a standard survey mode in field and to define the most appropriate cut-off for international data comparison. in addition, documents to support the implementation of the survey tool must be produced, such as detailed guidelines on how to use the questions, syntax for the analysis and translation guidelines. the final step is adoption of the question set by the wg. conclusion this article briefly presents the work carried out, so far, by the wg in developing measures to be used in population surveys to include people with psychosocial disabilities into the official disability statistics. the uncrpd (un 2006) explicitly includes, among persons with disabilities, those who have long-term mental impairments ‘which in interaction with barriers of various kinds may hinder their full and effective participation in society on an equal basis with others’ (art.1). the convention also requires state parties to collect ‘appropriate information, including statistical data and the results of research, to enable the formulation and implementation of policies for the purpose of giving effect to the present convention’ (art. 31). the psychosocial functioning measures being developed allow statistical offices and other agencies to collect and disseminate internationally comparable data on psychosocial disability. ensuring that this work is disseminated and understood by a community beyond statisticians and survey methodologists is greatly facilitated by people with a broad vision who are not directly involved in the work but who understand its significance and promote it. prof. leslie swartz is such a person. acknowledgements this article is based on research originally presented at the 20th washington group on disability statistics annual meeting, held virtually on 22–24 september 2020. the content has since been expanded and revised for journal publication. this republication is done with permission from the conference organisers. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.s. and e.d.p. contributed equally in the conceptualisation, implementation, analysis and writing of the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the authors declare that all data that support this research article and findings are available in the article and its references. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or the publisher. the authors are responsible for this article’s results, findings and content. references crabb, j., stewart, r.c., kokota, d., masson, n., chabunya, s. & krishnadas, r., 2012, ‘attitudes towards mental illness in malawi: a cross-sectional survey’, bmc public health 12, 541. https://doi.org/10.1186/1471-2458-12-541 crialesi, r., de palma, e. & battisti a., 2016, ‘building a module on child 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(ed.), 2010, measuring health and disability: manual for who disability assessment schedule whodas 2.0, world health organization, geneva. world health organization (who), 2001, international classification of functioning, disability and health (icf), world health organization, geneva, viewed 15 february 2025, from https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health. world health organization (who), 2011, world report on disability, world health organization, geneva, viewed 15 february 2025, from https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/world-report-on-disability. abstract introduction methods data analysis ethical considerations discussion conclusion acknowledgements references about the author(s) tapson mashanyare department of sociology, faculty of humanities, north-west university, mmabatho, south africa tendayi c. garutsa department of sociology, faculty of humanities, north-west university, mmabatho, south africa kiran odhav department of sociology, faculty of humanities, north-west university, mmabatho, south africa corresponding author: tendayi garutsa, citation mashanyare, t., garutsa, t.c. & odhav, k., 2024, ‘exploring perceptions of sexuality among youth with physical disabilities in gweru, zimbabwe’, african journal of disability 13(0), a1363. https://doi.org/10.4102/ajod.v13i0.1363 original research exploring perceptions of sexuality among youth with physical disabilities in gweru, zimbabwe tapson mashanyare, tendayi c. garutsa, kiran odhav received: 02 nov. 2023; accepted: 06 june 2024; published: 24 july 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: disability and sexuality are topical issues although they are not given much-deserved attention in most societies, and zimbabwe is not an exception. the socio-cultural stigma associated with disability adversely impacts sexuality and seeps into the social existence of youth with disability. youths with disability are assumed to be hypersexual or asexual. objectives: this article explores the sexuality views and experiences of youth with disability in the context of the negative stigma associated with disability and sexuality in gweru, zimbabwe. method: semi-structured interviews and focus group discussions were conducted among 20 gweru youth (18–35 years old) with physical disabilities and five key informants. perceptions of youth with disability and socio-cultural assumptions regarding their sexuality were analysed. results: the study established that most youths with disability faced social closure in terms of sexuality, with sparse offerings of sexuality education in their families. one sexual education theme that emerged from this study is sexual abstinence. some suggestions of more open forms of communication on sexuality and disability also emerged although as a minority view. conclusion: it was concluded from the study that, most youth feel that they are denied information on sexuality in their families and communities, as they are wrongfully assumed to have no need for it. however, youths with disability do not passively accept the negative perceptions about their sexuality, and they demonstrate their agency in resisting such negative perceptions. contribution: the study contributes to knowledge on sexuality and disability among youths with disability in contexts where strong traditional beliefs, myths, and misconceptions exist. keywords: youths with disability; perceptions; sexuality; socio-cultural perspectives; gweru, zimbabwe. introduction youths with disabilities are among the most marginalised groups and are likely to experience severe economic, and social disparities compared to youth without disabilities (undesa 2018). access to information on human immunodeficiency virus/acquired immunodeficiency syndrome (hiv/aids), sexuality, and reproductive health is usually unavailable to youths with disabilities (mathabela, madiba & modjadji 2024). article 23 of the convention on the rights of persons with disabilities (crpd) implores member countries to provide education and family planning to individuals with disabilities on equal basis with their counterparts without disabilities (landson 2022). provision of family planning services to people with disabilities is still a challenge for some african countries because of social norms on disability (yesgat et al. 2020). in some african societies, people with disabilities are stigmatised and viewed as asexual or hypersexual, while disability is considered a curse on account of negative socio-cultural norms (karimu 2017; sande 2019). most cultures in zimbabwe view sexuality as a taboo and an embarrassing subject, which cannot be discussed openly, out of respect. people who discuss sexuality openly are considered wayward and immoral (peta 2017). there are few chances for youths with disabilities to learn about sexuality from their parents and guardians (chikate 2020; mudzimu 2021; peta 2017). for some youths who manage to go to school, sexuality education is offered in zimbabwe as part of the school curriculum. however, there is a lack of sexuality education programmes that target out of school youths. some youth rely on peers and the internet for sexuality information. youths without disabilities have more opportunities to learn about sexuality such as in the family, at school, and in the community. youths with disabilities are denied opportunities to attend community-based programmes on sexual and reproductive health because of assumptions that they do not need such information (rugoho et al. 2020; taylor & abernathy 2022). similarly, a study carried out by chappell (2016) in kwazulu-natal, south africa, reported a lack of parent to child communication on sexuality issues because of social values of respect. many parents believe that youths with disabilities do not need such education and have anxieties and fears about the disabled youth engaging in sexual activities (kamaludin et al. 2022; kok & akyuz 2015). access to sexuality education is hindered by several barriers. these include parental beliefs, stereotypes, a lack of opportunity for sexuality training, and fear that sexual information and education may lead to uncontrollable sexual behaviour (rugoho et al. 2020). parental protection of youths with disabilities from any form of sexual experience usually results in their lack of sexual exposure and socialisation. there is a higher likelihood of adverse sexual and reproductive health outcomes for youths with disabilities (chappell 2016; frappier 2021; rugoho et al. 2020). in some families, there are differences in support for male and female sexuality, whether through sexual services of sex workers (liddiard 2014) or simply providing information on sexual matters to encourage young males to gain partners. thirdly, such families follow a strict approach of not providing sexuality information to young females and restricting them to explore sexuality with another person but allowing young males the freedom to do so (rugoho et al. 2020). assumptions of passive, docile sexuality, or asexuality, negatively impact sexual autonomy of youths with disabilities (carew et al. 2020; chappell 2016; rohleder 2015; sakairi 2020). family socialisation of children with disabilities relates to areas that are off limits in such a discourse: marriage, dating, offspring, and sexuality (rugoho et al. 2020; slater et al. 2018). ultimately, family socialisation erases their sexuality. the institutionalisation of such assumptions within health service structures effectively excludes youths with disabilities from sexual and reproductive health (srh) services. because of the perceived danger of ambiguous sexuality (hyper-sexual and/or asexual) of persons with disabilities, families either strictly monitor their sexuality or ignore it (holland-hall & quint 2017). sexual reproductive health services are thus impacted by an institutional manifestation of such societal beliefs, with the denial of such services to the youths with disabilities (rugoho et al. 2020). such an institutionalisation has mechanisms in place, wherein health workers label people with disabilities who test positive for hiv or have sexually transmitted infections (stis) as promiscuous (okello 2018), and this is particularly so for women with disabilities (lodenious 2020; rugoho 2019). this stigma results in some people with disabilities not returning to the health facilities, which further exposes them to other health-related complications such as stis. this article answers the following main research question: what are the factors that hinder dating, sexuality education, marriage, and childbearing experiences for youths with disabilities? methods qualitative research methods were used for data collection. qualitative research enables researchers to capture meanings attached to phenomena in a particular social context (bryman 2016; creswell & creswell 2017). qualitative research is most preferred when researchers want to understand subjective perspectives regarding the phenomena under study (mcgrath, pamgren & liljedah 2019). flick (2018) found qualitative research to be important for developing rapport with participants and helping them feel free to share their experiences. additionally, kabir (2018) found qualitative data to be useful as it allows the researchers to take note of perceptions, emotions as well as feelings in the research process. given the definitions, the qualitative design was suitable for this research because the researchers intended to investigate on the lived experiences of youths with disabilities. semi-structured interviews were found to be suitable because they allowed the researchers to obtain data in the form of conversation, using both open ended and closed questions. the conversation revolved around the topic rather than following the rigid questions that characterise standard interviews. focus group discussions were chosen because they encouraged reciprocal learning as the youths with disabilities engaged in discussion on specific topics. the researchers were able to get diverse views on specific topics on the sexuality of youths with disability. data from 20 semi-structured interviews, 2 focus group discussions, comprising 6 to 8 young participants with disabilities, were collected from wards 6, 7 and 8 in gweru. five key informant interviews were conducted with representatives of state and non-state actors who are involved in provision of general services such as welfare and advocacy and sexual health-related services to youths with disabilities. interviews were conducted in shona and english; participants were asked to choose their language of preference. table 1 shows the socio-demographic characteristics of youths with disabilities who participated in the study such as names (pseudonyms), age, gender, and impairment type. key informants were selected based on their practical experience in providing services such as case management, counselling, and justice and legal services to youths with disabilities. seniority was considered and all key informants had more than 5 years of work experience. youths are usually people aged 15 years to 35 years (africa youth charter 2006). however, for the purpose of this research, only youths aged 18 years to 35 years were considered for participation because they are considered legally competent to give consent. participants were aged between 18 years and 24 years. five of these participants were aged between 25 years and 30 year, and 7 participants were in the age group 31 years to 35 years. the primary researcher worked with an organisation for people with disabilities to recruit participants. whatsapp messages about the study were circulated in whatsapp groups for youths with disabilities. the participants referred other youths with disabilities until the desired sample size was reached. table 1: showing socio-demographic characteristics of participants. according to the 2022 population and housing census, the midlands province has a prevalence of functional difficulty of 10.3%, higher than the national prevalence of 9.2%. these statistics influenced the primary researcher’s decision to conduct the study in the midlands province. gweru was chosen because it has the highest population in the midlands province, with a population of 300 000, of which the majority are economically disadvantaged and vulnerable (matsa et al. 2021). the study wards were selected through purposive sampling, as these are the oldest locations in gweru, which are densely populated. the researchers saw a higher likelihood of getting the required number of participants in these highly populated locations. etikan et al. (2016) found that purposive sampling involves the inclusion of a participant or research site because of certain attributes that they have, which are important to the research. data analysis this study utilised thematic analysis to analyse the data from the semi-structured interviews and focus group discussions. thematic analysis is a method of extracting meaning from data, and it involves identifying and recording themes, as well as social patterns that emerge from the data (javadi & zarea 2016). the first step was to read the interview transcripts over and over, in-order to be familiar with the data. notes were written on the early impression found from the data. the second step was organising the data in a systematic and meaningful way through coding. data were reduced into smaller chunks. theoretical thematic analysis was adopted as researchers were more concerned about addressing specific research questions; data were analysed with the research questions in mind. open coding was used; the researchers did not have any preset codes. the codes were developed during the coding process. the researchers coded the same transcript separately, coding every relevant part of the transcript that addressed the research questions. after the researchers finished coding, they discussed, compared the codes, and modified some; this was done to all the other transcripts. the coding was done manually. the third step was searching for themes. the researchers closely examined the codes to see how they fitted into themes. other codes were combined to make a theme. after this process, the codes were organised into themes about perceptions of youths with disabilities in family contexts and their assumptions of sexuality. the fourth step involved reviewing and modifying the identified themes. the researchers combined all the data that were related to each theme. the themes were reviewed again to ensure that they were distinct and coherent. themes were examined for overlaps; where such overlaps were observed, the themes were combined. the next step was defining the themes and at this stage the themes were refined and examined to identify their meanings. the relationship of the subthemes to the theme was also examined. the final step was the write-up. the study utilised intersectionality theory to explain perceptions of youths with disabilities on family contexts and the assumptions of their sexuality. the term intersectionality was first coined by kimberle crenshaw (1989). the concept was first used among african-american feminists, disability feminists and marxist feminists, but has since become a common concept when conceptualising issues of inequality and injustice. the theory is quite useful as it attempts to understand how various identity axes including but not limited to disability, gender, sexual orientation, culture, and ethnicity among others, can enhance or prevent varying forms of advantage or disadvantages. intersectionality links various intertwined social categories, power dynamics, social inequalities, and various social contexts. it is linked to a very long history of black and third world feminism. intersectionality has come to be known as the framework for understanding notions of difference, and the resistance of essentialism of difference (hankivsky 2014; hill collins & bilge 2016). using the intersectionality theory, the researchers were able to understand the inter-link of disability, culture, gender, and social and familial perceptions that deny sexuality education and opportunities for dating and marriage to youths with disabilities. ethical considerations an application for full ethical approval was made to the north-west university human social sciences research ethics committee (nwu-hss-rec) and ethics consent was received on 25 may 2022. the ethics approval number is nwu-01155-22-a7. gatekeepers approvals were sought from: the city of gweru; office of the district development coordinator; zimbabwe republic police; and the relevant ward councillors. andoh-arthur (2019) confirms that gatekeepers are important intermediaries for accessing research sites and participants. they have the power to allow or deny access to researchers. confidentiality and anonymity the research adhered to the principles of confidentiality and anonymity. to ensure privacy and confidentiality, no other person, except the interviewees, was allowed during semi-structured interviews and during focus group discussions. pseudonyms were used to protect the identity of study participants. the researchers maintained strict security of the data to protect research participants, as well as state and non-state institutions. the researchers kept all personal data, field notes, and transcriptions on a password protected computer and hard copies in a locked cabinet. informed consent the primary researcher explained the purpose of the study to the participants, and participants were encouraged to ask any questions about the study. study participants were informed that their participation was voluntary, and that they could withdraw from the study if they were no longer willing to continue. participants were asked to read and sign a consent form in the language of their choice, or in cases where participants could not read or write, a witness would read it for them. findings this section presents and discusses findings on parental over-protection of youths with disabilities, locking up of youths with disability, denying them sexuality education, gender disability, and sexuality and the abstinence thrust of sexuality education. over-protection by family the study established that some youths with disabilities were overprotected by their parents and guardians. this restricted them from exploring relationships and dating. the youths with disabilities were not allowed to go to functions or public spaces. these restrictions closed sexuality spaces for them since it is in these public places that they could meet potential partners. over-protection reduced their confidence and lowered their self-esteem. this is shown in the following account: ‘my parents were over protecting me, i was not allowed to go to a boarding school. they did not want me to go far away from them. this over-protection impacted me negatively. it hindered me from experiencing and experimenting on relationships as a teenager. i was not allowed to go out with other kids. they were worried that i might get injured or sexually abused. in the process, they were closing the opportunities to get into relationships. i grew up as a person who cannot go to gatherings or any place where there were more people. i have some fear, and this results from my upbringing. sometimes over-protection results in future problems.’ (30 years old, female, stroke) because of parental overprotection, trickstar did not have ordinary teenage experiences as her peers. she had less knowledge about relationships because of lack of exposure. although her parents had good intentions, such overprotection resulted in challenges related to socialising with peers: ‘our parents sometimes over protect and spoil us. they are not comfortable when we are away from them. they have a feeling that we will be ill-treated. i was staying with my grandmother. when she died, my mother had to resign from her job to take care of me. she was worried that i might be sexually abused. i introduced her to my boyfriend, but she was worried, and she told me she does not want me to get married because men cheat on their wives and she does not want me to be disappointed. our families are overprotective. however, it becomes a disadvantage to the young women with disabilities who are denied a chance to explore life and date. they forget that one day they will die and there will be no one to take care of us. if one gets married, their spouse and children will take care of them.’ (24 years old, female, short lower left limb impairment) from the participant’s narrative, her mother still considers her to be a child who cannot make her own decisions. although she has a boyfriend, her mother does not want her to get married. youths with disabilities locked up because of societal discrimination the following excerpts illustrate how locking up youths with disabilities hinders them from experiencing dating and marriage. they are denied opportunities for mutual learning through peer association. families with members who have disabilities face societal discrimination resulting in some parents and guardians resorting to locking up and hiding youths with disabilities because of fear of stigma (goffman in clair 2018): ‘parents keep their children with disabilities indoors in fear of cultural stigma.’ (27 years old, female, cleft foot) ‘i was not allowed to go to certain functions where the other family members were going. i think my family would be discriminated against if people saw that they had a disabled child. our culture is not inclusive.’ (22 years old, male, amputee) contrary to trickstar’s account and the 24-year-old female focus group participant who were overprotected by parents because of safety concerns, the account of taona and the 27-year-old female focus group participant shows how their families were also protecting themselves from disability stigma through locking up youth with disabilities. this disability-related stigma was not only experienced by the youth with disabilities but extended to their families too: ‘some young people with disabilities are discriminated against in their homes and in the community. most of them spend their entire childhood locked indoors; therefore, they lack exposure and voice.’ (39 years old, male, key informant) some youths with disability are rendered inarticulate when it comes to issues of sexuality because of being under exposed. this also exposes such youth to sexual violence in the family as youth who are locked indoors cannot report cases of sexual violence or seek srh and other support services. most youths with disabilities are not offered sexuality education most participants reported not being offered sexuality education by their parents or guardians. this was linked to socio-cultural norms that regard sexuality as taboo and inappropriate subject in the family. because people with disabilities were not expected to get married and have children, their families were reluctant to teach them about sexuality. in some families, all the children did not receive sexuality education including those who do not have disabilities. the following accounts demonstrate participants’ experiences with sexuality education in the family: ‘i was never taught about sexuality due to our shona culture. it is taboo among the shona for a parent to talk about sex with children. uncles and aunts are the ones who can do this but, in our case, our aunts and uncles do not stay in gweru. they rarely visit us. we only meet at family gatherings, and usually there will be no time.’ (18 years old, male, epileptic) ‘my uncle used to teach me about becoming a man. he taught me to be responsible and avoid pre-marital sex.’ (21 years old, male, short left limb) ‘i got this information from my aunts and sisters, and not from my parents. when my aunts visited us, they would teach me about relationships. my aunts would make time to speak to me privately about sexuality every time they visited.’ (35 years old, female, short limb) lucas and chichie’s narratives confirm the socio-cultural norms that govern sexual communication among the shona people. parents are not culturally equipped to teach their children about sexuality. they delegate this role to aunts and uncles as prescribed by the shona culture. uncles and aunts are the support system for sexuality issues and social values. the findings reveal how urbanisation has disturbed the structures of traditional extended families. the traditional family set up has undergone changes in zimbabwe; it is now difficult to find time and have sexuality discussions with uncles and aunts who may be staying in other, families are being forced to adapt to change (nyanungo 2018). the study found participants whose parents subscribed to the socio-cultural myth of sexuality as taboo to be disadvantaged as they were deprived of sexuality education. gender, disability, and sexuality gender is an important consideration in the provision of sexuality education. male youth received sexuality education from their uncles or fathers. on the other hand, female youth were taught about sexuality by their mothers or aunts. it was not common for fathers to impart sexuality education to their daughters as illustrated in the following accounts: ‘i got information from my father when i wanted to leave home to look for a job. my father talked to me about being careful with relationships and the importance of remaining focused. he also told me that when i find a boyfriend, i should come with him home, so that the family can see him and he could be held accountable when i am impregnated.’ (35 years old, female, club foot) ‘my uncle used to teach me about sexuality and becoming a man he taught me that i would experience physical changes in my body. he also taught me to be responsible and avoid pre-marital sex.’ (21 years old, male, short left limb) ‘in the african context sexuality is not discussed in the family. i was raised by my mother, my father died when i was still young. maybe due to gender issues my mother failed to teach me about sexuality. maybe if it were my father, he would have taught me about sexuality, or my uncle. unfortunately, we do not have good relations with my uncles.’ (26 years old, male, epileptic and cerebral palsy) susan’s account shows that even fathers can give sexuality education to their daughters. this contrasts lucas’ narrative which reveals the standard practice among the shona assigns sexuality education to uncles and aunts. sexuality is generally regarded as a taboo topic, especially when a male parent discusses it with a female child, and when a female parent discusses sexuality with a male child. lucas’s account reflects the standard practice according to shona culture, which assigns the teaching of sexuality education to paternal uncles and aunties. junior’s narrative shows how women are not culturally capacitated to teach sexuality education to their sons. a study by rugoho et al. (2020) reported some differences in how families offered sexuality education to disabled youth. youth males were expected to get married 1 day; therefore, they were taught about sexuality more comprehensively than their female counterparts who were not expected to marry. families have low expectations for disabled youth and this becomes a barrier to sexual education. they are also incorrectly assumed to be asexual and therefore they are excluded from sexuality education. although sexuality is considered as taboo subject by parents in general, it is considered unthinkable to discuss sexuality of children with disabilities. the following extract illustrates the idea of increased taboo of sexual communications with disabled youth: ‘as you know, in a shona family like ours it is taboo for a parent to talk about sexuality in general, and even greater taboo to engage such discussions with a disabled youth. so, i was not taught about sexuality by my parents.’ (34 years old, female, amputee) socio-cultural beliefs about disability and sexuality inform the perceptions of the taboo nature of sexuality. there are myths and misperceptions that people with disabilities are not able to control their sexual drive, and therefore they should not be introduced to sex or involved in discussions about sexuality. people with disabilities are also assumed to be less interested in sex, and therefore some parents do not see the need for educating them on sexuality. in contexts where these beliefs are prevalent, disabled youth are deprived of sexuality education. sexuality education that emphasises abstinence data from this study revealed that most disabled youth who managed to get sexuality education in their families were mainly taught about abstinence. the emphasis on abstinence is in line with the cultural values in the study area, which shun pre-marital sex: ‘when we were growing up it was just taboo to talk to a teenager about using a condom. the key word that we were taught regarding sex was “abstain”.’ (34 years old, female, amputee) ‘sexuality education offered in schools is one sided as it focuses on abstinence alone without emphasizing on the use of condoms. young people do not take calls to abstain seriously as they think it is not practical. therefore, there is need to emphasize on the use of protection when indulging in sexual intercourse.’ (24 years old, male, albinism) although abstinence is compatible with cultural values, sexuality education that wholly focusses on abstinence did not give disabled youth enough information and the youth perceived it to be a bit outdated. youth also needed to be taught about other methods of safe sex such as using contraception as some youth still indulged in sex despite calls for abstinence. challenging misconceptions on sexuality of people with disabilities through teenage dating and parenthood although disabled youth have been assumed to be asexual and unsuitable as partners, some participants revealed that they started dating when they were teenagers. the following excerpts illustrate the experience of disabled youth in teenage relationships: ‘i got into my first relationship when i was in form three so i was 16 years old i kept it a secret because my family would not accept that.’ (34 years old, female, amputee) ‘when i started dating, i was 16, you would be willing to experience how it is to be in love and experience new things just like other girls.’ (24 years old, female, epileptic and albinism) the excerpts show that youths with disabilities start dating earlier just like their peers without disabilities. they also experiment just like their peers without disabilities. youths with disabilities are not passive recipients of negative stigma but they secretly engage in relationships to experience what other youth without disabilities experience. for most participants who had experienced motherhood and fatherhood, these parental experiences are silent ways of challenging the misconceptions about disability and sexuality: ‘when i entered a relationship that resulted in the birth of my child, there were some challenges. the father of the child was thinking that i was going to give birth to a child with a disability and some blemishes. later, he realised that the person he impregnated is just the same as anyone who does not have a disability, after i delivered a healthy child without any disability.’ (30 years old, female, stroke) ‘my parents never wanted me to be in a relationship, they never imagined me getting married or having a child due to my disability. although they wanted me to be happy, they were aware of the stigma associated with dating and marrying a person with a disability in our society. however, i know what i want in life, so i secretly dated my boyfriend. we would meet at school and other secret places. i secretly eloped and started staying with him. there was a challenge with getting accepted by his family. it is very difficult to be accepted by the family of a non-disabled partner. my boyfriend’s relatives were against the relationship. i was ready to fight for our marriage. i wanted to be a mother like other women. choosing a disabled wife was not acceptable to the family. most people think being an albino is a curse. they assume that if you marry an albino, you will give birth to children with albinism, but that is a lie. the father of my child does not have albinism and my child does not have albinism.’ (32 years old, female, short right limb and albinism) these narratives demonstrate the agency of disabled youths with disabilities in resisting negative perceptions of their families and society regarding dating and marriage. all participants who had given birth and had children did not a have disabilities. this challenged the myth that disabilities can be passed on to children from parents. this lessened the stigma and the discrimination against women with disabilities. giving birth marked a transition to motherhood, and this brought a higher status to young women with disabilities. experiences of motherhood were considered by the participants as passive forms of resistance to the negative perceptions about people with disabilities that view the people with disabilities as lacking in sexuality. discussion this article examined the perceptions of youths with disabilities about their sexuality, and impact of socio-cultural assumptions on disability and sexuality. the findings convey five themes that form different forms of social closure, which can be summed as follows: firstly, the theme of social protection that families enforce in the activities of the youths with disabilities, and this may be justified to the extent that it reflects parental care for their offspring, particularly to protect them from being socially or sexually abused. such an ethic does not form a closure. however, when conceived as over-protection, the sexual life of such youth is closed off, remains off-limits, or is considered taboo. confining youths with disabilities to their homes is in effect locking them off social life (peairson et al. 2014) and does not assist in breaking down the barriers of social shame that arise from the societal stigma of disability (chappell 2016; frappier 2021; rugoho et al. 2020). this is one of the points of intersectionality of oppression for youth with disabilities but is limited to parental overprotection rather than parental care. such overprotection is also demeaning to their sexual autonomy, which is under threat (braathen, rohleder & azalde 2017; rugoho & maphosa 2017). one dire consequence of such overprotection is that when the parents pass away, the youths with disabilities are rendered helpless because of dependence on over-caring parents. parental assumptions of the immaturity of their children with disabilities perpetuates such helplessness (guzman & platero 2012; smirnova & verbilovich 2020) or reduce such youth to the status of children (chappell 2016) and thus need to be closely monitored (santos & santos 2016). parental care is important but needs to be directed towards allowing the autonomy of such youth as much as possible. beyond parental care, such youth need to create other worlds of care, connections, and social worlds that can empower them more sustainably. such youth need intersectional socialisation to widen the net of positive forces that can empower their lives. overprotection by families opens to possible abuse within the family, as limitations are set on extra-family interactions because of social stigma. such limitations form another point of social oppression for young disabled people. if they are allowed a greater network of relations and interactions, their social field would be open to more possible support mechanisms, while institutional structures need to be working on civic education to change societal mindsets on sexuality and disability. secondly, the notion of public social space is central to disabled youth and their identity formation. such a space is cordoned off, understandably because of parental fears of abuse that youth may get exposed to. the result is an asocial upbringing that forecloses actions that can be useful for such youth, including a wide variety of civic interactions possible as in many societies where the disabled are empowered. social stigma against the disabled casts powerful negative taboos against the latter and needs to be worked upon both within the family and in society at large, for more effective and positive socialisation for such youth. both a constrained public space and negative social stigma delimits the existence of disabled youth and conveys a structural constraint for the latter. education is another significant theme that conveys the possibility of intervening in intersectional oppression and emerges from the views of disabled youth. because of the debilitating effects of urbanisation on traditional extended family systems and their protective mechanisms for the disabled (aunts, uncles, and peers chipping in to assist with sex education), and with some parents abiding by the norm that ‘sex talk is taboo’, a mixed picture arises. support may emerge in the form of more liberated fathers talking to their daughters or grandmothers advising grandchildren. yet, social taboos on sexual matters may be overriding and hold back on such more open forms of discourse to emerge and overtake such views relating to sex as taboo. education is thus necessary, both societal and in the family, to tackle both the stigma attached to these matters and to reinforce more positive forms of socialisation, both in civil society and in the family. sexual and reproductive health services would have to comply with such reinforcements, and schools, media, government, and non-governmental organisations may need to work together to enhance such education. contextual education and policy must be emphasised, so that both parental care and youth development are catered for without foregoing the sexual autonomy and identity of the youth. taboo topics must be carefully approached in educational institutions, programmes, services to gain maximum benefit for both families and disabled youth. sex talk across sexes between son and mother, or father and daughter, is usually taboo and not always possible (dawn 2020; frappier 2021; williams et al. 2014). but if it emerges it needs to be encouraged, and if there is resistance to such empowerment, other empowerment mechanisms need to be explored. thirdly, sex abstinence may not always be possible, but where it is done with the care of disabled youth by parents advising sex after marriage, such advice may need to be seen as useful particularly as these youth face the diverse dangers of abuse, still, the overriding emphasis on sex abstinence as a law or canon, forms another closure in the network of interpellations and intersectional oppressions, as community expectations confirm (rugoho et al. 2020). alternatives to abstinence need to be added to educational and programmatic structures that relate to disability and sexuality issues. struggles against more dominant views of sex, disability, and the expansion of the social life of the disabled remain, but wherever the space allows for intervention, that space needs to be used to improve the discourse on it, to lend further to the improvement of matters relating to sexuality and disability. lastly, the agency of disabled youth in challenging negative socio-cultural and familial perceptions regarding their sexuality was explored. through dating, marriage, and childbirth experiences, disabled youth challenge myths about their asexuality, unsuitability for marriage, and inability to bear children. participants demonstrated passive power by refusing to accept the asexuality label and indulging in teenage relationships. this finding resonates with a study conducted by karimu (2017), in ghana, where she found that even in contexts where sexual activities and conversations on sexuality were forbidden, young people with disabilities always found ways of expressing their sexuality and dating. although families and society did not recognise the sexuality of disabled youth, a study conducted in nepal by devkota et al. (2018) has revealed that people with disabilities have the same sex drive as their peers without disabilities. this motivation to oppose negative stereotypes of society regarding sexuality of disabled youth is in line with slater et al. (2018) study, which revealed that young women with disabilities were determined to refute the disability stereotypes that portray them as unattractive. conclusion the study concludes that most of the sampled youths with disabilities were given very little, if at all, sexuality education in their families, because of the negative perceptions of parents and the community. people with disabilities are assumed to be ambiguously, asexual and/or hypersexual. therefore, the sexuality of people with disabilities is not discussed in families. some parents feel embarrassed and unprepared to discuss sexuality with youth with disabilities and usually delegate this duty to uncles and aunts. some participants reported that sexuality education offered by parents and guardians emphasised abstinence only, which the youth perceived as lacking. the study recommends appropriate programmes for training all carers, biological or institutional, on the sexuality of people with disabilities. negative beliefs about the sexuality of people with disabilities need to be countered with more positive treatment in all civic, political, and social encounters in both the public and family realm, with the support of the media to implement this and promote the sexual agency of youths with disabilities. the study further recommends the development of a manual for out of school sexuality education that is accessible to the public and in local languages and use of media platforms to convey such messages. acknowledgements the authors would like to acknowledge all the participants who provided the data from gweru, zimbabwe. this article is partially based on t.m.’s thesis entitled ‘exploring the experiences of sexuality among youth with physical disabilities: a case study of gweru, zimbabwe for the degree doctor of philosophy in social sciences at the north-west university on 1 december 2023, with supervisors tendayi c. garutsa and kiran odhav. competing interests the authors declare that they have no financial or personal relationship that may have inappropriately influenced them in writing this article. authors’ contributions t.m. conducted the research, analysis, and the interpretation of data. t.m. was responsible for writing the manuscript and drafting this research article. t.c.g. and k.o. contributed substantially in analysis, interpretation of data, and the revision of the manuscript and research article in a supervisory role. funding information the authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this work was supported by the north-west university faculty of humanities research. data availability the data that support the findings of this study is available from the corresponding author, t.c.g., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. they do not necessarily reflect the official 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department of physiotherapy, faculty of health sciences, university of pretoria, pretoria, south africa muziwakhe d. tshabalala department of physiotherapy, faculty of healthcare sciences, sefako makgatho healthcare sciences university, pretoria, south africa citation africa, l.e., human, a. & tshabalala, m.d., 2023, ‘participation patterns of children with cerebral palsy: a caregiver’s perspective’, african journal of disability 12(0), a1058. https://doi.org/10.4102/ajod.v12i0.1058 original research participation patterns of children with cerebral palsy: a caregiver’s perspective lethabo e. africa, anri human, muziwakhe d. tshabalala received: 16 apr. 2022; accepted: 10 oct. 2022; published: 31 jan. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: participation in activities of daily living (adl), education, leisure and play in children living with cerebral palsy (cp) may be affected by various factors, as outlined in the international classification of functioning, disability and health framework (icf). the aim of this study was to describe the participation patterns of a group of these children. objectives: this study aimed to describe participation patterns in adl, education, leisure and play activities of children living with cp in modimolle. method: an exploratory-descriptive qualitative (edq) study design was used. a researcher-constructed bio-demographic data sheet and a semi-structured interview schedule were used to collect data from the primary caregivers of children (5–17 years) living with cp in modimolle. interviews were transcribed verbatim, translated from sepedi to english and analysed using the content analysis approach and nvivo software. results: the findings of this study indicated that children living with cp in modimolle require set-up and assistance to participate in various adl such as self-care, family and community activities. they also participate in formal and informal educational programmes as well as active and passive leisure and play activities. however, at the moment, they have limited opportunities to participate because of resource constraints and inaccessible infrastructure. conclusion: although children with cp in modimolle perform some adl, and participate in educational, leisure and play activities, they are not fully integrated into their community. legislative support and policy implementation are required to improve participation and integration of children living with cp. further studies on community-specific integrative strategies to enhance participation among children living with disabilities are recommended. contribution: this paper provides valuable information on the participation patterns of children with cp living in a rural area of south africa. the findings can assist with development and implementation of community-specific, integrative health and social care strategies to enhance participation among children living with disabilities. keywords: participation; cerebral palsy; education; leisure; play; children; caregiver. introduction cerebral palsy (cp) is a movement and posture disorder caused by impairment of the developing brain of an infant. this disorder is associated with various combinations of comorbidities such as epilepsy, visual, motor and cognitive impairments (donald et al. 2014; reddy 2005; richards & malouin 2013). the global prevalence of cp has been reported as 2–2.5 per 1000 births (donald et al. 2014; eunson 2012, 2016; odding, roebroek & stam 2006). in northern africa, the prevalence is two per 1000 live births, while the prevalence of cp in southern africa, including south africa (sa), is higher, at approximately 10 per 1000 live births (couper 2002; donald et al. 2014). the higher risk and incidence of cp in sa may be attributable to the prevalence of human immunodeficiency virus (hiv) and acquired immunodeficiency syndrome (aids), malaria, poverty-related malnutrition, tuberculosis (tb) and meningitis observed in some provinces, such as limpopo (treasury.gov.za 2019). children living with hiv and aids may present with neurological impairments caused by the virus, resulting in complications, such as hiv encephalopathy (hive) and hiv-associated neurocognitive disorders (hand) causing injury to the developing brain (croucher & winston 2013; levin 2006; sørensen kristian et al. 2016). cerebral palsy, with or without comorbidities, may subsequently lead to impairments in the body structure and function domain (international classification of functioning, disability and health framework [icf], world health organization [who] 2001), activity limitations and participation restrictions in education, leisure and play, with a subsequent negative impact on health-related quality of life (hrqol) of children and their families (bearden et al. 2016; donald et al. 2014; law et al. 2014; reddy 2005; who 2001). through participation in education, leisure and play activities, children are provided with opportunities to form friendships, to gain knowledge, to learn new skills and to be creative. this can assist children in finding meaning in life, have a successful transition into adulthood and could foster independence and successful integration into society (majnemer et al. 2010; orlin et al. 2010; palisano et al. 2009; wagner et al. 2005). children living with cp, like all children, desire to learn new skills and, if possible, to engage in meaningful occupations and contribute to their communities (mcconachie et al. 2006). participation in educational, leisure and play activities is essential for a child’s physical, psychological and cognitive development. research has shown that if given the opportunity, children with disabilities can attain these goals and that participation may have a positive effect on their hrqol (bourke-taylor et al. 2017; bult et al. 2011; majnemer et al. 2010; orlin et al. 2010). the evidence is seen mostly in well-resourced, developed countries, where policies and legislation are implemented to enable children with disabilities to overcome barriers and participate in education, leisure and play activities in their communities (aron & loprest 2012; bourke-taylor et al. 2017; power et al. 2018; radsel, osredkar & neubauer 2017; shikako-thomas et al. 2013). there is a paucity of evidence on the participation patterns of children with cp and their engagement in adl, education, leisure and play activities, especially in lowand middle-income countries such as sa (abdel malek, rosenbaum & gorter 2020). children living with disabilities in rural settlements are often at a disadvantage because of limited infrastructure and resources (maphumulo & bhengu 2019; treasury.gov.za 2019). information on the participation patterns of children with disabilities is required for the development of context-specific policies and legislation. the aim of this study was therefore to explore and describe the participation patterns of children living with cp in a rural area of sa (modimolle, limpopo), from the perspective of their caregivers. research methods and design study design an exploratory descriptive qualitative (edq) research approach, as described by hunter, mccallum and howes (2019), was used. data were collected through direct interactions with the participants (caregivers of children living with cp) in their own settings. this was performed in order to understand the participants’ (caregivers’) perspectives and perceptions of the poorly understood phenomenon of execution of adl and participation by their children in education, leisure and play activities. research setting approximately 50% of the limpopo province population lives in rural areas, and this province has the highest poverty level in sa (maphumulo & bhengu 2019). data collection was conducted in the modimolle–mookgophong municipal area, in the waterberg district. fh odendaal is the hospital providing health services to areas in the modimolle–mookgophong municipality and is supported by only one health centre in the mookgophong area and two clinics (in vaalwater and alma). population and sampling strategy the population for this study included all primary caregivers of children from 5 to 17 years with a confirmed diagnosis of cp who resided in modimolle, limpopo. a non-probability, purposive sampling frame was used to recruit the participants (hunter et al. 2019). participants were identified with the assistance of community care workers and a newly developed disability centre in modimolle. the sample size was determined by identifying when data and meaning saturation had been reached (aldiabat & navenec 2018). data collection the interview schedule comprising questions that included probes was subjected to a peer-review process and piloted on caregivers of children living with cp in vaalwater and bela-bela. the pilot study was conducted by the researcher over a period of one month (september 2019), and thereafter the interview schedule was adjusted accordingly. data for the main study were collected over a two month period (october to november 2019). a data collection sheet (containing sociodemographic questions) and a semi-structured interview schedule (in-depth interviews) were used. trustworthiness strategies credibility of data collection was optimised by using two audio-recorders during the interviews and all interviews were transcribed verbatim. where participants responded in their vernacular, responses were translated by an independent sepedi language expert and corroborated by the researcher. to ensure transferability, the researcher documented all environmental (physical and social) circumstances in which the data collection occurred. this was performed to enable the researcher in providing an accurate and rich description of the environment. furthermore, to enhance confirmability, the researcher performed member-checking with the participants. member-checking ensures the credibility of the research data by providing participants an opportunity to confirm whether the data analysis and interpretations were a true reflection of their experiences (speziale & carpenter 2007). after data analysis, the researcher visited participants who consented to participation in the member-checking process to discuss the analysed data and interpretations. caregivers who participated in the member-checking were satisfied with the data presented and the interpretation of their responses was a true reflection of their perceptions and experiences. data analysis in addition to the sample size recommended by manson (2010), meaning saturation was assessed during the data coding process by considering the richness and thickness of data, which indicate data quality (hennink, kaiser & weber 2019). furthermore, operational saturation and theoretical saturation, as described by de vos et al. (2011) and forero et al. (2018) were achieved. operational saturation is the process of assessing saturation from conceptualisation to finalisation of the study (hennink et al. 2019; hennink, kaiser & marconi 2017). theoretical saturation is the point during category development at which no new categories emerge (strauss & corbin 1998). saturation was achieved by quantifying the number of new codes per interview and mapping emerging data saturation patterns from the third participant (nvivo v11). meaning saturation was observed after the 12th participant, however, analysis continued in order to achieve operational and theoretical saturation for all participants. the bio-demographical quantitative data for the 19 caregivers and their children with cp are presented as frequencies, proportions and percentages. central tendency is provided as median and interquartile ranges (iqr) (statistica, www.statsoft.com) to describe the participant sample and provide the context to the qualitative enquiry. the transcribed audio files from the interviews were downloaded and anonymised by allocating a code to each respondent. the transcripts were imported into nvivo (version 11) for data management and further exploration of data (kaefer, roper & sinha 2015). the researcher analysed the data through the process of content analysis (erlingsson & brysiewicz 2017; gaur & kumar 2018). coding was performed by the researcher and an expert colleague acted as co-coder. the coding process was initiated by identifying meaningful units through a process of condensation (erlingsson & brysiewicz 2017). thereafter, manifest coding and latent coding were performed, and similar codes were grouped to form categories. categories with similar trends were grouped into sub-themes. sub-themes that were closely related were further grouped to form themes, and subsequently themes were combined to form overarching themes. when differences in coding and theme development arose, the two colleagues discussed in order to reach consensus. an overview of the themes, sub-themes, categories and participants’ quotes is provided in content analysis summary tables (mathye & eksteen 2016; miles, huberman & saldaña 2014). ethical considerations ethical clearance was obtained from the institutional ethics committee (smurec/h/94/2019:pg), and permission to conduct the study was granted by the departments of health, social development (limpopo province) and the chief executive officer (ceo) of the district hospital in modimolle. participants were also assured that participation was voluntary; all information was confidential and that they could withdraw from the study at any time without providing reasons or prejudice and health care would not be withheld from them. written informed consent was obtained from the appropriate primary caregiver or guardian of the children concerned. results bio-demographic and socioeconomic data of caregivers and children twenty-two families were recruited, but three candidates were excluded as the age of the child had been incorrectly captured in the patient records. the final sample therefore consisted of 19 children and their primary caregivers (table 1). table 1: bio-demographic and socioeconomic data of caregivers and their children with cerebral palsy (n = 19). all caregivers who participated in this study were sa citizens; the majority were female and either the child’s parent or grandparent (21.05%). most primary caregivers were unemployed, between 30 and 49 years old (57.89%) (median [iqr] age of 41.6 [31.3–49.8] years), and the majority were not married, either single or living together (78.94%). the highest level of education of most of the caregivers was secondary school (73.68%), with a reported median (iqr) of 3 (2–5) dependants. the children living with cp who participated were mostly females (57.89%) and in the pre-adolescent or adolescent stage (median [iqr]: 11.0 [8.4–14.3] years). most of the children were diagnosed with spastic cp in particular spastic diplegia (52.63%), presented with very few comorbidities and one or more contractures (57.89%). based on the gross motor function classification system (gmfcs) level, the functional ability of most of the children was moderately to severely affected (median [iqr]: 3 [1–4]), and they used assistive devices such as wheelchairs (table 1). activities of daily living and participation patterns of children in education, leisure and play the quantitative findings on participation patterns related to adl, education, leisure and play of children with cp in modimolle, as reported by their caregivers, are presented in table 2. table 2: quantitative data on children’s participation patterns in activities of daily living, education, leisure and play (n = 19). as far as adl, including self-care activities such as bathing and dressing, were concerned, the majority of the children were able to feed themselves (78.94%), while many could bath and dress themselves and were therefore only partially dependant on their caregivers (52.63%). nevertheless, their caregivers still had to supervise or adjust the activity, for example, a child may have been able to bath and dress himself or herself, but set-up was required (e.g. the caregiver had to prepare the water and the clothes) and to stay close to assist whenever needed. the parents also reported that some of the children participated in community and family adl such as religious (21.1%) and household activities (26.31%). in the case of children who did not participate in any activities (26.31%), their daily routine included bathing, eating, watching television or lying on the floor and sleeping. four of the children were able to attend church services with their families on sundays. approximately a third of the children with cp in modimolle participated in formal education (36.84%), while 31.57% participated in informal education activities at the local centre for people with disabilities. the remainder of the participants (31.57%) were not participating in any educational programme at the time of the study. over half the children were involved in activities, including play activities (57.89%) such as games on their phones and playing with toys. others took part in active leisure activities such as skipping with a rope (15.78%) and soccer (5.26%) and passive leisure activities such as watching television (15.78%). emerging themes four overarching themes emerged from the content analysis of the interviews: (1) bio-demographic and socioeconomic factors; (2) participation patterns in adl, education, leisure and play activities; (3) barriers and (4) facilitators of participation. this article reports on the bio-demographic and socioeconomic context, as well as the participation patterns of children with cp living in the modimolle–mookgophong district. performance of activities of daily living two sub-themes related to the performance of adl emerged from the analysis of the data, namely: (1) assistance with adl and (2) independence in adl (table 3). table 3: participation in activities of daily living based on interviews with caregivers. the categories of assistance with adl (children who are partially dependant) were: bathroom care (toilet and bath), self-grooming and feeding home adjustments household chores. although most children were able to participate in adl and could assist with some household chores, caregivers explained that these children often needed assistance with some of the self-care adl such as toileting, bathing and feeding. in the case of those who were fully dependant on caregivers for self-care and adl, caregivers reported that they treated them like (little) children and did everything for them. where children could perform some of these activities independently, their caregivers gave them the opportunity to do what they could and only assisted them with completing the task. some caregivers even went as far as adjusting the home to enable their children to participate in some adl and family activities. under the theme ‘independence in adl’, a few caregivers reported that their children were fully independent when performing these activities and participated in household chores such as cooking, sweeping, and vacuuming. the sub-theme and categories are provided in table 3, together with some verbatim caregiver’s responses. participation in educational activities four sub-themes relating to participation in education emerged, namely: (1) participation in a formal education programme; (2) participation in informal education programmes; (3) no participation in any educational activities and (4) participation of other children with disabilities in the community. as indicated in table 4, children with cp in modimolle participated in formal education activities but in a different way. the children in the early childhood programme (creche) were taught how to write, draw and even count, while children in mainstream education (‘attending school’) and those who were home-schooled were taught the national standardised curriculum. those children attending public or private institutions as learners with special education needs (lsen) were taught subjects such as english, mathematics, isizulu, as well as arts and culture, physical education, computer studies and life skills, and even adl skills such as cooking and baking. table 4: participation in educational activities based on interviews with caregivers. under the sub-theme ‘informal education’ (table 4), children participated in educational activities at the local disability centre. these children were taught to pray, to write and to participate in physical education activities such as wheelchair races. the category of ‘no participation in educational activities’ included caregivers who reported that their children stayed at home and did not attend any school or centre. the sub-theme ‘other children living with disabilities’ described caregivers who observed that children in their community attended special schools; however, they could not recall any of these children participating in educational activities beyond basic school education (no tertiary education). other caregivers had seen children with disabilities who were ambulant undergo basic education at a school or centre and not necessarily those who were unable to walk. participation in leisure and play activities four sub-themes related to participation in leisure and play activities emerged, namely (1) leisure and recreational activities (at school, home or in the community); (2) social or religious gatherings; (3) loss of interest in participation as child grows older and (4) programmes for typically developing peers (table 5). table 5: participation in leisure and play activities based on interviews with caregivers. in the category ‘leisure and recreational activities’ (at school, home or in the community), caregivers reported that their children participated in recreational activities such as sports (e.g. football and netball), playing alone or with toys, while some even played in the street with other children. the children also participated in recreational activities, such as doing dance steps and skipping with a rope with friends and family; however, because of their physical difficulties with jumping most children preferred to be the one holding the rope rather than the one jumping. those who were more ambulant also participated in swimming and boxing in their parents’ yards, while others had the opportunity to participate in physical education at the disability centre in their area. those who were unable to participate physically in play activities would either watch television or watch other children playing sports or games in their leisure time. in the category ‘social or religious gatherings’, caregivers reported taking their children to functions such as weddings and church services and visiting neighbours or family members. in the category ‘loss of interest in participation with age’, caregivers raised the concern that their children tended to lose interest in playing, especially outside their homes, as they grew older and also because of regression in physical function and fear of being teased. in the category ‘programmes for typically developing peers’, caregivers reported that typically developing children were exposed to programmes such as boxing, karate and cricket in the community and therefore were able to participate in more activities than their peers with cp. discussion bio-demographic and socioeconomic context of participants the age and marital status profile of caregivers in this study are similar to that of a study conducted in gauteng among caregivers of children living with disabilities (kropiwnick, elphick & elphick 2014). in this descriptive study in modimolle, the highest level of education of caregivers was, in most cases, secondary school. this aligns with statssa (2011), which reported that 81.2% of black sa citizens over the age of 20 years had completed primary and secondary education only (https://www.statssa.gov.za). similarly, only two of the caregiver participants in this study reported having a tertiary qualification, which could explain the high unemployment rate among this cohort of participants. eighteen of the 19 participants lived in an informal settlement and experience inaccessibility of services and scarcity of resources. this result agrees with the studies by christian (2014) and maphumulo and bhengu (2019), which highlights the difficulty in accessing services and the limited resources experienced by children living with disabilities in sa. the limpopo province is among those sa provinces where 58% of citizens receive social grants as their primary source of family income (statistics south africa [statssa] 2015). a survey by statssa (2011) showed that 47.6% of the households in limpopo province depended on social grants as their main source of income, with three to five social grants per household and a median (iqr) of 3 (2–5) dependants per caregiver. these results are similar to those reported by kelly (2019) in a study on disability, cash transfer and family practices in sa, where their findings indicated the sharing of social grants among families. in this study, there were more female than male children; these findings differ from those of the study by kropiwnick et al. (2014), who found that the majority of children with cp in gauteng who participated in their study were male. a possible reason could be the difference in sex distribution between the limpopo and gauteng provinces. the male-to-female ratio in the gauteng province is different from that of limpopo, as limpopo has more females (statistics south africa [stats sa] 2019). the study by kropiwnick et al. (2014) included children from a broader age range (including younger than 5 and older than 18 years). furthermore, similar to the present study, the majority of the children in the study by kropiwnick et al. (2014) had been diagnosed with spastic diplegia with resulting contractures, decreased range of motion in numerous joints, fatigue and pain, a commonly expected clinical picture of children with cp (bangash et al. 2021; donald et al. 2014; mutlu, bugusan & kara 2017; reddy 2005; richards & malouin 2013). the comorbidities epilepsy and hiv were found in this study’s patient cohort, as in other studies in africa (donald et al. 2014; eunson 2012, 2016; odding et al. 2006). as for the level of mobility and ambulation of the children in this study, there was a wide distribution, as indicated on the gmfcs scores. just under half the participants presented with a gmfcs score of iv or v, indicating that these participants were permanent wheelchair users. this fact is supported by the findings of palisano et al. (2010) in ontario (canada), which indicated that the probability of wheelchair usage in children classified as gmfcs iv increases with age. participation in activities of daily living, education, leisure and play participation in an array of activities assists in learning life skills such as social skills, problem solving and self-identity awareness, which may facilitate children’s potential to experience social fulfilment, intellectual achievement and to live an economically productive life (aron & loprest 2012; bourke-taylor et al. 2017; majnemer et al. 2010; orlin et al. 2010; shikako-thomas et al. 2013). participation, therefore, contributes to children reaching their highest possible level of independence (aron & loprest 2012). although most children in this study were able to perform adl, they needed assistance with some aspects, such as self-grooming, toileting, bathing and feeding (table 2). this could be explained by the fact many of them presented with a functional mobility level (gmfcs) of iii–v, implying that their physical disability ranged from moderate to severe (table 1). according to mcmanus, corcoran and perry (2008), children with gmfcs scores of iii–v are dependant on caregivers for their adl. in a study by amaral et al. (2014), it was found that despite their disability, children with cp participated in certain household chores. these findings correlate with those of this study that children were participating in some household chores although they were dependant on caregivers for some of their adl. in this study in modimolle, a few caregivers had made home adjustments to assist their children to become more independent. some caregivers were unable to adjust their homes, for instance, to add ramps, railings and bathrooms because of a lack of financial resources brought about by both the financial burden of taking care of a child with cp and unemployment (kelly 2019). although all the participants in this study were of compulsory school-going age (5–17 years) and despite the documented advantages of participation in educational activities for children with disabilities (aron & loprest 2012; bourke-taylor et al. 2017; shikako-thomas et al. 2013), only two thirds of the sample participated in formal and informal education. the school attendance rate in this study was much lower than the study by nuga-deliwe (2016), where it was found that 83.3% of children with disabilities in sa were attending mainstream schools or schools for learners with special needs. although similar educational services are available to children in the modimolle–mookgopong district, full-service school programmes for children with disabilities as prescribed in education white paper six (ewp6) are not available (department of education 2001). reasons for the lower rate of school attendance in limpopo could be that it is one of the poorest and most underdeveloped provinces in sa with limited services for people with disabilities such as schools and hospitals (maphumulo & bhengu 2019; statssa 2016; statssa.gov.za 2019). in this study, caregivers responded that the children in their care attended early childhood education programmes, a mainstream school, a local disability centre or a school for children with special needs. a study by morse and bell (2018) found that caregivers of children with disabilities opted to home-school their children, as they felt that their educational needs were not being met within the educational structures in the community. similarly, in this study, the one caregiver who chose to home-school her child reported that her child was not provided with enough support in the mainstream school. the low school attendance rate among these children corresponds to the results reported by the department of basic education (dbe 2015), which indicated that 43.85% of children with disabilities did not attend school (nuga-deliwe 2016). the dbe survey, however, focused only on children in public schools and did not include those attending private institutions (nuga-deliwe 2016). the results of this study indicated that 30% of children were educated at a disability centre, which does not fall under the jurisdiction of the dbe. in the case of children living with disabilities in the modimolle–mookgophong district who were not part of the study, the caregivers in this study reported having seen these children attending schools for children with special needs. however, the caregivers did not know whether any of these children had received education beyond their basic education. ndlovu and walton (2016) reported that children with disabilities encountered more difficulties with access to educational institutions. they also experience limited support from disability units at tertiary institutions, because of unimplemented policies, inadequate funding and inaccessible buildings, public transport, the environment and negative attitudes in the community. these aspects of post-basic education for children with cp require further exploration. as far as leisure activities are concerned, children who were reported to be more ambulant (table 2) participated in a variety of recreational activities such as football or playing on their own or with their toys or with other children in the street. other recreational activities included doing dance steps, skipping rope, sports and physical education activities at the disability centre. some children were fortunate to participate in swimming and boxing, while others preferred social activities including joining the caregiver during social gatherings, such as church, weddings and even visiting neighbours. these types of activities were similar to the recommended recreational and social activities identified by the children’s assessment of participation and enjoyment (cape) outcome measure (king et al. 2004) and leisure activities reported among children with cp living in spain and the netherlands (bult et al. 2011). caregivers in modimolle reported that children who were not able to actively participate, participated passively by simply watching others play, either in the streets or on the fields where games such as basketball were played (table 3). this supports the findings of alghamdi et al. (2017) regarding the negative impact of physical impairment on children’s participation in recreational activities. those children who could participate in activities such as boxing, cricket and running in the community were, according to their caregivers, those who presented with less severe physical impairments. this corresponds to the results of a study by majnemer et al. (2008) who found that children living with disabilities were involved in fewer activities than their typically developing peers. strengths and limitations this study provides insights into the participation patterns of children with cp living in a rural setting in sa. the methodology was designed to gather information to explore the human experience from the perspective of caregivers of children living with disabilities. eighteen of the participants lived in an informal settlement in a rural area that could have skewed the data and limits the generalisability of the findings. accessibility of public facilities such as education and entertainment facilities or schools and parks in the modimolle–mookgophong district were not assessed which constitutes a limitation. implications and recommendations for practice, research, and policy development children living with cp in the modimolle–mookgophong district participated in certain activities within their communities. however, further investigation into the barriers and facilitators influencing their participation patterns and the academic performance of children living with disabilities in rural areas such as modimolle is required. based on the findings of this study, the researchers recommend that local government (the municipality), the departments of basic education, social development and health should collaborate to create and optimise appropriate educational and recreational (leisure and play) opportunities for children living with disabilities. development and implementation of community-specific, integrative health and social care strategies to enhance participation among children living with disabilities are recommended. furthermore, legislative support and policy implementation are required from the south african government to improve participation and integration of children living with cp. caregivers should also be supported in accessing treatment options for improving children’s independence in participation and in making appropriate adjustments to their homes to enhance their children’s independence when engaging in adl. conclusion this study was performed in an informal settlement and rural area of sa where families have limited access to services and resources. although children with cp residing in modimolle perform some adl and participate in educational, leisure and play activities, they are not fully integrated into their community. furthermore, the rate of participation in activities was low and less diverse than that of able-bodied children and participants’ interest declined with age. legislative support and policy implementation are required to improve the participation and integration of children living with cp. further studies on community-specific integrative strategies to enhance participation among children living with disabilities are recommended. acknowledgements the authors would like to acknowledge prof. carina eksteen for her clinical input and proofreading of the manuscript. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.h. was the supervisor of the study and assisted in the conceptualisation of the protocol and manuscript, the data analysis and editing of the manuscript. m.d.t. contributed to the conceptualisation of the data analysis section of the protocol, provided assistance with data collection, qualitative data analysis and the collation of the results. l.e.a. developed the protocol, collected and anlaysed the data, and collated the manuscript. funding information the researchers received funding from the health and welfare sector education and training authority (hwseta) in august 2020. data availability the data that support the findings of this study are available on request from the corresponding author, l.e.a., upon reasonable request. disclaimer the views and opinions 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published: 27 aug. 2015 how to cite this article: nwadinigwe, c. & olewe, o.s., 2015, ‘bilateral upper limb amputations in victims of high tension electrical injuries: three case studies’, african journal of disability 4(1), art. #117, 3 pages. http://dx.doi.org/10.4102/ajod.v4i1.117 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. bilateral upper limb amputations in victims of high tension electrical injuries: three case studies in this case studies... open access • abstract • introduction    • ethical considerations • case report 1 • case reports 2 and 3 • discussion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ bilateral upper limb amputations result in severe disability. high voltage electrical injury is a rare cause of such an outcome and injuries often occur as occupational hazards. we present three case reports of accidental high voltage injuries that occurred in a non-occupational setting. victims were all initially managed at other centres before referral to our hospital and all subsequently had bilateral upper limb amputations. the high cost of treatment, importance of prevention, and need for rehabilitation are highlighted. introduction top ↑ high voltage electrical injuries are caused by exposure to voltages equal to or greater than 1000 v (escudero-nafs et al. 1990) these injuries are relatively rare (okpara et al. 2006) when compared with other causes of burns presented to the emergency units and especially so in people who do not routinely work on overhead high voltage lines. for those who survive such injuries the long term sequelae can be devastating. apart from cutaneous injuries, there is massive destruction of underlying muscles, nerves, blood vessels and bones which often requires amputations (escudero-nafs et al. 1990). studies show that up to 49.4% of victims of high voltage injuries would need amputations (hussmann et al. 1995) with the majority in the upper extremities because the hand is the usual primary point of contact (laborde & meier 1987; remensnyder 1980). the single most important factor related to risk of amputation appears to be the voltage strength (oluwatosin 2004). mortality in the acute period is often as a result of cardiac and respiratory arrest, shock, renal failure and sepsis and has been reported as between 0% to 18% (janjua 2002; remensnyder 1980). regional studies indicate that victims are often electricity company workers and vandals (abbas et al. 2009). this contrasts with non-electricity line workers who routinely do not have to deal with high voltage lines but may become accidentally injured as is seen in the cases presented. less than 6% of victims are eventually able to return to their previous line of work (hussmann et al. 1995). prolonged hospital stay, multiple surgeries, long rehabilitation processes and heavy financial involvements are attendant issues. we present case reports of three young men who suffered severe high voltage injuries necessitating bilateral upper limb amputations. ethical considerations ethical clearance for this research was approved by the national orthopaedic hospital, enugu, department of orthopaedics (nigeria); irb/iiec number s/313/855, protocol number 156. case report 1 top ↑ mr s.h. was a 28 year old self employed welder who was referred to the national orthopaedic hospital, enugu (nohe), from another tertiary centre after a high voltage electricity injury sustained one week earlier. the patient had accidentally touched an overhead high voltage wire (supposedly transmitting 11 000 v) with a long pole whilst working on top of a one storey building situated under a high voltage line. he was wearing gloves but was not wet at the time of the incident. following contact he was transfixed to the pole for about 20 minutes before being rescued by a neighbour using a wooden stick. he lost consciousness but did not fall from the building. he was taken immediately to a nearby teaching hospital where he regained consciousness after about an hour. severe burn injuries to all his limbs were identified. following initial treatment, he was referred to our centre at his request after he declined an offer of amputation. we found gangrene of the left forearm extending up to the cubital fossa, and gangrene of the right upper limb from the hand to the proximal third of the forearm with exposure of the radius and ulnar. the right lower limb had 14% septic deep dermal burns with extensive eschar. the left lower limb had 4% mixed thickness burns with eschar on the dorsum of the foot. the patient was co-managed by the plastic and orthopedic surgery units. he was properly counselled and had provisional bilateral amputations of the upper limbs the same day (left above elbow and right below elbow) as well as wound debridement and escharectomy of the lower limb wounds. his rehabilitation is ongoing at the time of this report (figure 1). figure 1: mr s.h., three months after bilateral upper amputation. case reports 2 and 3 top ↑ masters a.c. and d.e. are cousins who sustained severe high voltage electrical injury whilst trying to adjust their television antennae to obtain a clearer view during a world soccer tournament. the tv antenna accidentally touched a high voltage electric wire passing directly over their roof (11 000 v transmission line). they were transfixed for a length of time until they were extricated using a wooden stick and then transferred to a nearby general hospital where they were initially treated before referral to our centre by the fourth day. on presentation, both had gangrenous upper limbs up to the mid forearms. d.e. had, in addition, flame burns of the anterior abdominal wall, left medial distal arm and the axilla totalling 10% of the total body surface area (tbsa). patient a.c. had, in addition, flame burns of the left arm, posterior aspect of the right arm and temporal aspect of the scalp, totalling 8% tbsa; he also lost his left ear. all the burnt surface areas were infected. their 24 hours urine output was greater than 1.8 l per person. they were counselled for amputation to which they consented, and bilateral below elbow provisional amputations were performed and later re-fashioned (figure 2 and figure 3). figure 2: mr a.c., five weeks after amputations. figure 3: mr d.e., five weeks after amputations. upon discharge from the hospital there was no follow-up. discussion top ↑ high voltage electrical injuries are caused by exposure to voltages equal to or greater than 1000 v (escudero-nafs et al. 1990). passage of current through tissues leads to electrothermal heating, generating temperatures of up to 4000°c and more. this can result in extensive tissue damage along the path of current flow. theoretically the heat generated may be determined from the formula gc = c2r/4.187, where gc is the heat in gram calories per second, c is the current in amperes and r the resistance in ohms (knight 2004). typically there is a ‘source’ and ‘grounding’ wound corresponding to the points of contact and exit of currents from the body. grounding injuries may be multiple. in the three patients presented, the source of current was through both hands whilst grounding was via the lower limbs. the extent of cutaneous injuries is often just the tip of the iceberg compared to the depth and extent of underlying tissue damage. other mechanisms of injury include flame burns, arc injuries, conduction abnormalities of the heart, as well as secondary injuries from violent muscle spasms and falls. mortality is usually because of cardiac and respiratory arrests, shock, renal failure from myoglobinuria and sepsis. treatment must be prompt, with aggressive resuscitation, cardiac monitoring, organ support, wound care as well as supportive care (arnoldo, klein & eubran 2006). survivors often end up with amputations (escudero-nafs et al. 1990). wound care may require early decompression, serial debridement with subsequent wound cover for salvageable limbs. some authors advocate mandatory exploration to determine the depth and extent of injury with a view to improving limb salvage (d’amato, kaplan & brilt 1994). we, however, advocate that this be tailored to the peculiarities of each case as unnecessary explorations can increase morbidity. some authors have also recommended the use of nuclear imaging (hunt et al. 1978) and high resolution colour and pulse doppler ultrasonography (chen et al. 2003) to identify areas of muscle necrosis and injury to determine need for possible exploration. the patients reviewed lost both upper limbs. this by any means is devastating, considering the extent of incapacitation. the issue of cost of treatment and rehabilitation remains a heavy burden especially in our subregion where health insurance coverage is still a rarity. the only locally manufactured upper limb prostheses are of the cosmetic types which are expensive. functional types have to be imported at exorbitant costs, often beyond the financial capacity of the victims. this underscores the need for enlightenment and prevention as most exposures are purely accidental. a common finding amongst the three patients is the unsafe proximity of the residential buildings to the overhead high voltage electrical lines and transformers – a breach of minimum clearance standards. a casual observation in our urban cities suggests many buildings are improperly situated (figure 4), especially the high rise structures, exposing occupants to potential danger. efforts by regulatory authorities to enforce minimum safe clearance of residential buildings as well as public enlightenment will go a long way to preventing high voltage electric injuries especially amongst non-electricity workers. figure 4: a commercial building situated less than two meters behind an 11 000 v transformer. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced their writing in this article. authors’ contributions c.n. (national orthopaedic hospital) conceptualised the work and reviewed the medical reports. o.s.o. (national orthopaedic hospital) wrote reports and the literature review. references top ↑ abbas, a.d.i, dabkana t.m.i, tahir c. & naaya h.u., 2009, ‘case report high-tension electrical burns: report of two cases’, annals of bums and fire disasters xxii, 3. arnoldo, b., klein, m. & eubran n.s., 2006, ‘practice guidelines for management of electrical injuries’, journal of burns care & research 27, 439–447. http://dx.doi.org/10.1097/01.bcr.0000226250.26567.4c chen, y.x., xu, y., guo, z.r., chai, j.k., hu, x.j. & zhang, z.m. et al., 2003, ‘the application of ultrasonography in the diagnosis of deep electrical injur’, zhonghua shao shang za zhi 19(1), 38–41. d’amato, t.a., kaplan, i.b. & brilt l.d., 1994, ‘high voltage electrical injury: a role for mandatory exploration of deep muscle departments’, journal of the national medical association 86, 535–537. escudero-nafs, f.j., leiva-oliva, r.m., collado-aromir, f., rabanal-suirez f. & de molina-nofiez, j.m., 1990, ‘high-tension electrical burns. primary treatment of seventy patients’, annals of the mediterranean burn club 3, 256–261. hunt, j., lewis s., parkey r. & baxter c., 1978, ‘the use of technetium 99 stannous pyrophosphate scintigraphy to identify muscle damage in acute electric burns’, journal of trauma 19, 409–413. http://dx.doi.org/10.1097/00005373-197906000-00004 hussmann, j., kucan, j.o., russell, r.c., bradley, t. & zamboni, w.a., 1995, ‘electrical injuries--morbidity, outcome and treatment rationale’, burns 21, 530–535. http://dx.doi.org/10.1016/0305-4179(95)00037-c janjua, s.a., 2002, ‘high voltage electrical injuries’, journal of the college of physicians and surgeons v12(3), 140–142. knight, b., 2004, forensic pathology, 3rd edn., arnold publishers, london. laborde t.c., meier r.h., 1978, ‘amputations resulting from electrical injury: a review of 22 cases’, archives of physical medicine and rehabilitation 59(3), 134–137. okpara, k.o., chukwuanukwu, t.q.g., ogbonnaya, i.s., nwadinigwe, c.u., 2006, ‘pattern of severe electrical injuries in a nigerian regional burn centre’, nigerian journal of clinical practice 9, 124–127 oluwatosin, o.m., 2004, ‘burns in africa’, african journal of trauma 2, 20–25. remensnyder, j.p., 1980, ‘amputations and high tension electrical injuries’, icib 17. abstract introduction methods results discussion conclusion acknowledgements references about the author(s) kristen abrahams department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa dellicia de vos division of student affairs, disability unit, cape peninsula university of technology, cape town, south africa armand bam small business academy, stellenbosch business school, stellenbosch university, stellenbosch, south africa harsha kathard department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa inclusive practices africa research unit, faculty of health sciences, university of cape town, cape town, south africa citation abrahams, k., de vos, d., bam, a. & kathard, h., 2025, ‘exploring communication supports for children with visual impairment and blindness: a case study’, african journal of disability 14(0), a1620. https://doi.org/10.4102/ajod.v14i0.1620 original research exploring communication supports for children with visual impairment and blindness: a case study kristen abrahams, dellicia de vos, armand bam, harsha kathard received: 21 nov. 2024; accepted: 27 feb. 2025; published: 14 may 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: early communication supports are essential for development, learning and later employment. for children with visual impairments and blindness (vi and b), we argue that communication and its supports need to be considered outside of the normative ableist framework to best facilitate development. objectives: this study aimed to explore and describe how a home-based programme at a community-based organisation supported the communication development of children with vi and b by exploring and describing: (1) the organisation, its context and ethos; (2) the programme methodology including, role players, skills and activities; and (3) communication opportunities. method: a case study design was employed, and data were collected through interviews, document reviews and observations. notably, one member of the research team has a vi, which provided additional context and understanding of the case and enhanced the analysis process. results: key themes emerging from the data included the organisation’s history and context that shaped its ethos, the focus on a parent-led methodology and the support of communication through early multimodal opportunities. conclusion: the findings emphasise the importance of understanding communication and communication supports beyond the normative ableist framework, which creates opportunities to appreciate and support communication holistically. more specifically, for speech-language pathologists, this study can expand their understanding of communication and raises questions about the profession’s potential contribution. contribution: the study contributes to the literature within the south african context that demonstrates the value of communication and further captures how multimodal community support contributes to the health and wellbeing of people with disabilities. keywords: visual impairment; blindness; communication; community; communication supports; home-based programme; multimodal; speech-language pathology. introduction human communication is fundamental for socialising, learning and working (littlejohn, foss & oetzel 2021). through communication, we can create connections, develop relationships, engage with knowledge and earn an income. early communication development provides the foundation for individuals to engage meaningfully with the world around them (beuker et al. 2013). children begin to learn important communication skills by engaging with their environment and interactions with people (hoff 2006). the development of these early communication skills builds the foundation for later complex language and literacy emphasising the importance of early support for communication development. for children with disabilities, the development of communication follows a unique trajectory compared to other children and subsequently, the communication supports required may vary in nature and complexity and may depend on the severity of the disability (brouwer, gordon-pershey & stransky 2023; mosca, kritzinger & van der linde 2015). when considering children with visual impairments and blindness (vi and b), communication development occurs with limited or no visual input (mosca et al. 2015). studies have argued that without appropriate stimulation, children with vi and b are at risk of communication delays (i.e. delays in speech, language and literacy development [veldhorst et al. 2023; vervloed et al. 2019]) because of their restricted interaction with their environment (mosca et al. 2015) and the importance of vision for early communication acquisition (rattray & zeedyk 2005). authors have therefore argued for the importance of early intervention to support children with vi and b to develop the necessary communication skills (mosca et al. 2015). subsequently, research has shown that programmes that promote early development and maximise the use of functional vision can make a difference in the long term (dale, tadic & sonksen 2014). a study by lynch et al. (2018) evaluating the feasibility of a home-based developmental stimulation training programme supporting parents and caregivers of young children with visual impairment in malawi found that providing families with support around vi and b positively impacted on both the developmental and educational opportunities. the findings of this study also emphasised the importance of collaboration across sectors as integral to the success of any early childhood initiative. similarly, dale et al. (2019) conducted a uk-based longitudinal observational study considering the effects of a home-based early intervention programme for babies and young children with vi. they found that children using the developmental journal with a structured development approach showed better outcomes than other forms of home-based support. peltokorpi et al. (2023) argued early interactions between a child with vi and their parents may be affected by the parent’s lack of awareness of the importance of tactile experience for communication leading to fewer opportunities to develop their communication. they postulated that bodily-tactile modality (including body posture, movements and touch patterns) could be used to convey communicative intent. the study therefore aimed to test an intervention for children with vi and additional disabilities in parent-child dyads that can support increased access to social communication interactions through bodily-tactile expressions. the therapist facilitated mother and child intervention focussed on sharing ideas on how to support the child’s communication development. the results highlighted the importance of using bodily-tactile modality to support communication development in this population. rattray and zeedyk (2005) argued that the absence of vision alone does not prevent the establishment of a rich communicative system and has been conceptualised using theories that place an emphasis on the visual modes of communication and their importance for communicative interactions. similarly, peltzer-karpf (2012) found that language acquisition for both sighted and participants with vi followed the same pattern of development, with a slower progression for children with vi which decreased with age and maturity. based on the literature, several observations were made: (1) the studies placed emphasis on the importance of early intervention to support children with vi and b and their families and highlighted the impact of late identification and support across the lifespan in terms of opportunities and growth; (2) while early supports are necessary for all children developing communication, we argue that the focus on the individual child for intervention is problematic in that there is limited consideration of the context of the child and their family and the influence of the environment on learning; (3) as communication is integrated with all aspects of a child’s development, its inclusion in developmental stimulation support programmes is critical highlighting the importance of using communication as means and ends; (4) interestingly, while the research has emphasised the importance of early support for children with vi and b, there is little emphasis placed on understanding the role of the speech-language pathology in supporting communication development in this population (blackstone et al. 2021); and (5) we consider the contribution of rattray and zeedyk (2005) as seminal in signalling the need for change in our perception of communication and communication development. rattray and zeedyk (2005) argued that many studies have been conceptualised using theories that place an emphasis on the visual modes of communication and its importance for communicative interactions. challenging ableism in communication drawing on the work of henner and robinson (2023), we draw inspiration from crip linguistics to unmask the pervasive and dominant understanding of communication in linguistics and other disciplinary fields. they argued that the ways in which languaging has been described contribute to the disordering of forms of communication falling outside of the dominant framing. language, therefore, has been reduced to mainly speech and written systems which often excludes or devalues other forms of meaning-making such as gesture, art and touch. disciplines therefore use disability as a way to categorise bodies as disabled by the way they produce language. this theoretical shift in perspective is an essential conceptual framing in approaching understanding vi and communication. using this framing, we argue that the theory and normative basis for understanding communication uses an ableist lens that assumes that children are sighted and that communication partners are sighted. in this study, our assumption is that children with vi and b are capable of developing communication through an enabling environment. using this framing, we have conceptualised communication as a multimodal, multisensory interaction in which people make meaning together. with this in mind, it would therefore be important to think about the different forms of communication for this study. using an ableist framing, children with vi and b would not have access to visual forms of communication such as pictures, gestures and non-linguistic forms of communication which primarily convey extra-linguistic meaning. this narrow perspective may fail to acknowledge the other ways which support meaning-making that transcend visual mediums. extending our argument, not only are our understandings of communication (and what is valued) ableist but so are our everyday environments where children interact to make meaning. as such, children with vi and b are required to assimilate towards the normative standards of communication which requires them to live between sighted and blind worlds. in relation to this, jenks (2005) reflected on parents experiences of raising children with vi and the negotiations of living in a sighted world. while there have been shifts in perspective around vi being a socially constructed disorder, jenks (2005) argued that it does not negate the fact that the child with a vi still needs to negotiate a world which considers sight as a core value. it is within this context that we explore a community-based organisation and its contributions to supporting children with vi and b and their families. the contribution of speech-language pathologists to supporting communication for children with visual impairments and blindness speech-language pathologists (slps), with their focus on supporting communication, play a crucial role in supporting speech, language and literacy development. the profession has focussed on supporting communication disorders largely using a medical model which foregrounds assessment and management of discrete communication skills to improve quality of life and participation. while speech-language pathologists work with many different disabilities, little research has considered the contribution of supporting children with vi and b to develop communication (carvalho, fernandez & montilha 2020). additionally, speech-language pathologists are not specifically trained to work with this population (mosca et al. 2015). while research interest in the field is growing, particularly around augmentative and alternative communication strategies for children with vi and b (blackstone et al. 2021; kavelin, power & french 2024; mccarty & light 2023), the depth and breadth of the research remain limited. researchers the research team consisted of two speech-language pathologists who were involved in the conceptualising of the study and integration of disciplinary knowledge and understanding of communication into the study. the third member of the team is an individual with a visual impairment who holds a master’s degree in disability studies, and who managed the data collection process. the fourth team member was a representative of the organisation that was able to provide an understanding of the history, trajectory and context of the organisation itself. methods study context within a south african context, there is little understanding of the communication support for people with vi and b and therefore the study focussed on understanding the support offered to parents through an non-governmental organisation (ngo) called league of friends of the blind (lofob). league of friends of the blind, a community-based non-profit organisation (npo), situated in the western cape, south africa, provides support services to vi and b individuals and their families (lofob 2024). the organisation is the only one in the western cape with home and centre-based services for families of young children with vi and b. at the time of this study, lofob employed 23 people on a full-time basis. more specifically, the home-based programme involved a manager who was a professional occupational therapist, an additional occupational therapist, a social worker, a pre-school teacher, a teacher’s assistant and a driver. this unique combination of professionals and services made the site suitable for the exploration of communication supports. aim and objectives this study aimed to explore and describe how a home-based programme supported the communication development of children with vi and b. the objectives of the study were to explore and describe: (1) the knowledge, underpinning values and principles that inform the home-based programme; (2) the skills of stakeholders and role players in the home-based programme required to implement the home-based programme; (3) activities included in the home-based programme which supports communication; and (4) the opportunities available for the development of communication. additionally, based on the insights gained through the case, the work further aimed to consider the contribution of slps to the vi and b population. research design the study utilised a case study design and followed the theory of stake (1995) as this method uses qualitative data to answer pre-determined questions (yazan 2015). by using a case study design, insight is gained into the particular situation of the participants, their circumstances, social relationships and the practices that are embedded in them (taylor, bogdan & devault 2015). while lofob has many offerings, the case specifically focussed on the home-based programme from its inception which acted as the bounding for the case. through the study, it was important to document what has been performed in communities to support communication for children with vi and b in order to strengthen our efforts towards inclusion. data collection for the study took place during the coronavirus disease 2019 (covid-19) pandemic which had significant impacts not only on the data collection process but also the contributions of the home-based programme. these nuances will be highlighted throughout the article. participant recruitment participants in the study were categorised into two groups. group one was made up of three lofob staff members namely the programme manager (lydia), the social worker (isaac) and the occupational therapist (sally) who were currently working at the organisation and were involved in some capacity in the running of the programme. the second group was made up of four parents whose children participated in the home-based programme. two of the parents were mothers (gertrude and mary) and the third and fourth were a married couple (hilton, mavis and daughter samantha). pseudonyms are used throughout. at the time of the study, the children of the parents interviewed had moved to different primary schools. see table 1 for further details about the participants. purposive, non-random sampling was implemented in this study. this method allows for the collection of data that is specific to the study aims and allows for participants with an in-depth understanding of the phenomenon to be recruited (emmel 2013). table 1: participant descriptions. procedure following ethical approval, lofob was contacted by the researchers for organisational consent. the recruitment of participants was facilitated through engagements with the programme manager to identify interest in the study among current programme staff members and caregivers. following this, the researchers made initial contact with the participants via email or via a telephone call. once identified, participants were given information sheets and consent forms for written and/or verbal consent before data collection because of the covid-19 restrictions. data were collected using a number of different methods including organisational documents, observations, field notes, the researcher’s reflective diary and semi-structured interviews allowing for triangulation of findings (ahmed 2024). the researchers also drew on insights and understanding from another study conducted at the same organisation which focussed on a different offering namely the centre-based programme (kamedien 2023). ethical considerations ethical clearance was obtained from the faculty of health sciences’ human research ethics committee at the university of cape town on 07 october 2021 (no. 586/2021). this study adhered to the declaration of helsinki (world medical association 2013) and upheld the ethical considerations of beneficence, non-maleficence, justice and autonomy as described throughout the methodology. for autonomy, participants were provided with an information letter and consent form to review before confirming participation. participation was voluntary and the participants could withdraw at any point, without penalty. for confidentiality, contact details were deleted following the completion of the study and pseudonyms were used throughout. while there was no direct benefit for participants, they were informed that the study could help strengthen the organisation’s offering. precautions were taken to ensure non-maleficence with relevant referrals to support as necessary. data analysis the data analysis process was guided by braun and clarke’s (2006) six-step framework for thematic analysis to assist with identifying common ideas and patterns of meaning for analysis and representing the findings. the analysis was driven by the data that were captured so themes were not pre-determined. the following steps were used during the analysis process: (1) the researchers individually read and re-read the transcripts to familiarise themselves with the data; (2) each researcher made notes about key ideas of the data that stood out to them in line with the aim and objectives of the study; (3) collectively the researchers discussed these key ideas to identify emerging themes in the data; (4) the researchers consolidated the themes by extracting the relevant data that supported the themes; and (5) as a collective, the themes were reviewed and refined. the research process was further enhanced by the contributions of a team member with a visual impairment, who conducted the interviews and assisted in the analysis and identification of themes. this contribution strengthened the data collection and analysis process as it allowed for deeper understanding and sense-making of the data through her own lived experiences. in particular, we drew on reflexivity within this process to reflect on our personal understanding and orientation to communication as a basis for the analysis and interpretation (olmos-vega et al. 2023). scientific rigour scientific rigour was ensured during the study through considerations of transferability, creditability, dependability and confirmability. the researchers aimed to uphold trustworthiness by presenting data transparently, truthfully and accurately (kuper, reeves & levinson 2008). transferability was achieved by providing descriptions of each participant, the setting and the research methodology used. confirmability was achieved by keeping an audit trail of all participants’ recorded interviews and verbatim interview transcripts. credibility and dependability were ensured through member checking and the contributions/insights of a research assistant with vi. results introduction to the case the case study focussed on an organisation called lofob which is a non-governmental organisation which focusses on supporting individuals with visual impairments and blindness. from its inception, the founding member of the organisation was a blind man who played a crucial role in the leadership and management of the organisation. since then, the organisation has transitioned from a focus on charitable giving towards independence development which has grown to include orientation and mobility, social work, occupational therapy, sports, hostel accommodation for both males and females, social enrichment programmes and a professional administrative team. in the 1980s, lofob introduced its early childhood development programme the first of its kind in the western cape. today, lofob largely serves marginalised communities as part of its offering. the findings specifically focus on the home-based programme where we explore the key themes emerging including its ethos, home-based methodology and supporting communication. ethos of the programme the ethos promoted by lofob was evident in the interviews with parents, staff and leadership and the document analysis. the ethos of the organisation challenged normativity; shifted focus to capabilities, independence and functionalities; and adopted a lifespan focus. challenging normativity: ‘strength not to feel otherwise about my child’ the parents said: mavis: ‘you know i hated the word “disabled” or “normal”.’ hilton: ‘we don’t use normal.’ mavis: ‘yeah which was quite a learning.’ gertrude: ‘having a blind child, it was a death sentence or end of the world … but you learn to see a life with her … you can still treat her like others. so that is where i gained the strength that let me not feel otherwise about my child. let me take my child as a special person and i must take her as a gift because god gave me that gift. so that was the strength that i got from lofob.’ through the words of the parents, it is clear that challenging the idea of normativity was a key learning and insight that they gained through their engagements with lofob, indicating the emphasis on understanding the unique capabilities of their child beyond their visual impairment. education is key: responding to stigma and discrimination, exclusion the ethos of ongoing education is embedded in the organisation. league of friends of the blind invested in the education of parents which carries through to their children and to community members they are in contact with: hilton: ‘we actually make her strong enough to cope with all of the stigmas and the cruelty. you know when we used to go to a restaurant the kids would gather around her in the play area and they would like want to ask her questions and or they’ll say she scares them. we didn’t stop her from playing with other children because we knew there was always going to be another scene that she was going to be upset with. then the one day she comes to us she says you know daddy that one child asked me ‘are you blind’ so i told her no, you can see i’m not blind, i’m partially sighted and that to her was … so what she did good after a few visits we liked going to the restaurant.’ hilton: ‘she [mavis] just goes automatically into education mode. my mum does the same when people stare at samantha.’ sally: ‘bring them out of their homes because we’ve noticed that a lot of community members aren’t aware that there’s someone with a visual impairment living in their area.’ the lofob environment supported parents in challenging the deficit norm for children who were blind and vi. the realisation that the imposed social norm was constructed in an ableist society helped to disrupt the notion of being normal and therefore develop an attitude towards supporting their children to learn in ways which were helpful for them. both the organisation and parents used ‘education is key’ in everyday situations to disrupt stereotypes and to educate – an ethos in which families and children are also actively involved. challenging normativity through education sets the stage for shifting the focus to developing capabilities which was actively promoted in the programme. shifting focus to capabilities, in(ter)dependence and functionality the parents and lofob team concurred that the programme shifted the focus to capabilities, in(ter)dependence and functionality which helped to capitalise on children’s and parents’ strengths and facilitate positive attitudes and tangible everyday outcomes: hilton: ‘lofob just made us realize actually there’s just nothing wrong with her. she’s just differently abled.’ while it was a process, like it is for all children, parents were motivated by their children’s progress which was often beyond their expectations: hilton: ‘when the doctor gave us the diagnosis he said ‘the middle brain is missing’ it means that she’s possibly gonna have mental impairments and there’s gonna be coordination problems because her left and right side will never align … i promise you, we’ve never seen that at all. so as much as that was her diagnosis and that’s what the scans showed and the mri showed (but) we’ve never been able to say that samantha is lacking from a mental capacity ever.’ hilton: ‘one week the kids were the servers so that built their confidence but i think the reason that they brought us (parents) in to come and observe samantha was that just to dispel misconception that she’s unhappy here, she’s quiet and when we saw samantha it was a different kid. she was serving lunches, she was assertive, she was taking the lead on things.’ mavis: ‘i remember lofob used to call us out on that and say, you need to let her sort herself out, she’s got to be independent. don’t dress her, let her do as much as she can possibly because you need to enable her and by you taking over all of that, you’re actually disabling her. they used to scold us a lot.’ a lifespan focus the data confirmed that lofob has a lifespan approach with early intervention being a key focus. they support critical transitions, for example children’s entry from hospital to homes, from home to preschool, to primary and high school and post-school supports. in relation to the home-based programme, there was a specific emphasis on supporting early transitions for children with vi and b and their families which evolved over time: isaac: ‘the sooner that we are able to work with a baby and a mom of a baby, the better. my aim is i would say to prepare the child for life.’ issac: ‘so its a start for them to be … moving up to be able to be in lofob ecd [early childhood development] centre. … so you get supported while you still in … [i]t’s an early intervention for lofob for parents … then they are prepared for ecd and primary school up to high school. at lofob, it’s a foundation, i’d say it’s laying a foundation for them.’ sally: ‘providing the stimulation and the three-monthly check-ins with the parents uhm to get updates on their development. what’s new, what’s happening in their lives, what development has happened within the last three months. what stimulation they can provide within the home and then if they are attending a special care centre, also providing support to those teachers.’ a parent-led methodology the lofob home-based programme is underpinned by a parent-based methodology which includes several support structures including home and centre visits, individual and group support, professional support, psychosocial, parent support and resources. the lofob home-based programme is aimed at guiding and supporting parents with newly diagnosed blind and visually impaired babies and children to cope with raising a child with special needs. this programme is facilitated by professionally trained lofob staff members and may take place at the homes of clients, at the lofob centre or at community centres. each client (baby or child and parents or caregiver[s]) is assessed individually before joining the group sessions. during the group sessions parents support and encourage each other through sharing their experiences and the lofob staff support them through encouragement and by providing access to necessary resources. for the parent-led methodology, we focus on the key methodologies informing the programme including home-based support, resources including staff and services offered. contextual shifts necessitating changing focus the focus of the home-based programme was to provide parents with the necessary support within the different spaces that they occupy within their communities: lydia: ‘what is important for us as providing the support service to children uhm that is their space, that is their home so we were very much about where you are as the family … to use your own environment, to look at your own support system because that will then make sense to work from there from the inside-out …’ lydia: ‘… when i say home support it can be at home, it can be … the young blind child is attending a crèche or whatever else, we will go there you know.’ while conceptualised as home-based, the programme has evolved into a centre-based programme because of contextual changes such as the covid-19 pandemic and increased safety concerns with going into communities: sally: ‘… our home program, … initially started out pre-covid, as visits where we would go to the clients’ home, do assessments give them home programs, stimulation programs where we would see what the client presents with and then giving parents the necessary tools to implement stimulation within their home context lydia: ‘… covid has impacted a big deal … we were so so far away from our parents and our families. children were still getting referred to our organisation … we had some contact but we didn’t see physically … we brought in videos some of the moms were able to send through videos …’ sally: ‘uhm since covid and with the safety being an issue … one of our drivers were nearly hijacked. uhm we’ve now changed it a little bit to having the parents either access and come to lofob like an out-patient … kind of a program uhm where we see them here otherwise if they are very far and they not by means to come here, we do meet them at a clinic or uhm like … a district hospital or some sort of community centre uhm within their community.’ supports offered in programme through its programme, lofob offers a number of supports including individual support for families, psychosocial support through the social worker and parent or caregiver support through the parental support group. individual support: initially, the lofob team would focus on providing individual support within the home environment: sally: ‘we would go to the clients’ home, do assessments uhm give them home programs, stimulation programs where we would see what the client presents with and then giving them the necessary tools and the parents the tools to implement stimulation within their home context.’ psychosocial support: all the parents were very appreciative of the support they received from the lofob staff and from the parent support group: gertrude: having a blind child it was a death sentence or end of the world. you can see it … [y]ou can see a life with her … [y]ou can still treat her like other people, and you must know that if you have a blind child, it’s a blessing from god. that’s not a sin or a curse so that’s the strength that i got from them because as from my side i was asking too many questions to god. how can he give me the child like this, how am i going to raise this child or to manage to look after this child? lydia: ‘… i always say, in order for the child to be ok, the parents needs to be ok.’ isaac: ‘… i do psycho-social support for the parents as they need it mostly at that stage because most of them … are still … going through a lot of things, pressures from the family, in denial about their child’s visual impairment and so there’s lot going on there. psycho-social support linking them to services like resources that they might need.’ parent and caregiver support: the parents felt that they received support from one another during the group sessions and from lofob staff: hilton: ‘… we [parents] were actually good support to one another in that regard. … we could share a lot and help one another with things …’ gertrude: ‘… like they [lofob staff] teach us as a parent … how to communicate with your child … the way you must treat your blind child, you mustn’t treat her specially like she’s special like she’s a special needs yes she is a special needs but don’t give her that attention. she must be like the other children around her.’ lydia: ‘… parents can get together in a room like this and just feel that this is a safe space to say oh so this happens to you as well. how did you ma we talk about it, we laugh about it, we cry about it … parents support group facilitated by both occupational therapist and social worker.’ lydia: ‘… to make sure that the child is developing optimally and then also to make sure that the parents are equipped with the information and the knowledge and the resources that they need to make sure that the child is as ok as what the child needs to be … looking at ages and stages and stuff and so just to say that lofob provide support to children that have [multiple] impairments.’ sally: ‘i work predominantly with the home-based program. uhm so doing developmental stimulation and programs with the parents who come in for out-client care …’ gertude: ‘… but [with lofob] i was having a parent group i’ve learn a lot. so that is where i gained the strength that let me not feel otherwise about my child.’ supporting communication league of friends of the blind’s ethos and methodology of practice shaped the opportunities for communication support in the programme. communication was supported in the following ways: (1) creating opportunities for communication both directly and indirectly; (2) multimodal communication and (3) an emphasis on early exposure. creating opportunities for meaningful engagement to support communication development the importance of creating opportunities which supported early language and literacy development in children was highlighted, with particular emphasis being placed on appreciating how children with vi and b may experience the world differently: lydia: ‘children who are sighted are exposed to literacy and to early literacy in everything you know because the world is not geared to include children who are visually impaired. i mean there are just right now in this room, there’s so much printed information. there’s pictures, there’s formats, there’s photographs … i always use the example of the little the child that even before the age of two or three already rides past the big m for mcdonald’s knows already that’s where i can get my ice cream or whatever else because i see that big m and you know the child with a visual impairment, they miss out on that.’ using this understanding, emphasis is therefore placed on creating a supportive environment that can foster holistic development through training and supporting caregivers to create opportunities for engagement. the importance of every day doing in shaping communication is emphasised. these foundations of early support in the environment create opportunities for children to succeed later in life: hilton: ‘the one thing that they told us not to do, was to leave samantha in a corner type of thing, to her own devices. [mavis] was mentioning earlier [in the interview], if she starts rocking, it’s a sign of boredom … we should actually try and work with her instead of just leaving her to do her own thing.’ while there was a direct focus on communication in some cases such as the early exposure to braille, the main way in which communication was supported was through engaging in occupations such as play that supported and reinforced communication through doing: lydia: ‘the importance of a program such as lofob [is] to kind of empower parents with the information [like] “your child needs to play mommy”. “but i don’t know how to do that with my child” so therefore we help and we give you support programs and information in terms of, this is what play with your child needs to look like.’ sally: ‘whether it’s you getting pictures or uhm if they have some kind of remaining vision or whether it is just speaking to a child a lot. uhm explaining what’s happening, what’s around them, what’s going on, who’s in the room, what things look like, what things feel like. having the child explore their environment as much as possible but i think that’s kind of what i try and do as much as i can.’ ‘communication is more than words’ for children with vi and b, the importance of multimodal, multisensory communication support through play was emphasised. a combination of oral, tactile and visual (using residual vision) input was emphasised. using thick description during communication interactions through engaging the senses of hearing (i.e. providing an in-depth description of an activity), in combination with touching and feeling placed emphasis on providing the child with rich communication input. in addition, multiple modalities were used including reading, technology, pictures, videos, objects and songs: isaac: ‘with visual impairment, more talking, more explanation, more description of things because most of them can barely see.’ lydia: ‘we often say to parents hold your child close. i’ve had parents that take the child’s hand when you talking especially when your child is totally blind or severely visually impaired so that he’s able to feel where the sound comes from and then take his hand back to his mouth and bring it back to your mouth because he’s then able to hear and to feel [the sound].’ mary: ‘the ball with the thing inside where you can throw it and then she can hear which side did it go to and then she would follow that ball and pick it up.’ gertrude: ‘mostly to watch tv and also to listen to the radio.’ mavis: ‘and then eventually you know you get a child a tablet or something like that you know for her to learn and she was on youtube which i think also helped because there was a lot of educational stuff in the cartoons itself that she picked up and that i realized this is actually helping us so much.’ mavis: ‘we used to play songs for her.’ hilton: ‘and then she’d dance yeah.’ mavis: ‘as soon as she could walk and then she would dance and if she wanted her daddy to play another song then she’d say another number, another number and then she’d dance.’ in particular, tactile exploration of the child’s environment is encouraged as an important precursor for literacy development for learning braille: lydia: ‘we’ve got adaptive books that we lend out to our families and it can be the tactile books in terms of introducing them to so we sit and then we take our parents through that.’ mary: ‘they would sit and tear up papers and play with beads and different types of textures and stuff. that was also like, you don’t realize that your child needs these things especially from a visually impaired type of child so that also they said will help eventually with them reading braille.’ gertrude: ‘the eggshells. we used to play with eggshells so that she can know the braille. it’s six eggs neh and then that’s how they learn the braille. we make the dots by [using] the eggshells and then you put in the shells there inside then that’s how they learn while they are playing.’ gertrude: ‘i was doing the reading before she goes to sleep. i was doing the story books and also she was registered in the library for the blind. so they use to send the books and something called the braille reader where you put in the cd and then it will read for her with different languages. that’s how she learnt.’ early support leads to later success creating opportunities for early development of necessary skills for learning was emphasised by participants, with particular emphasis on how such early supports can have an impact on their activity and participation as they get older: isaac: ‘if you learn to communicate at a young age it will have more positive results for the child, their self-esteem, their image and how they grow up, their confidence and how they do things in later in life.’ lydia: ‘we are very proud that we introduce our little ones as young as two-and-a-half years of age to braille.’ discussion the discussion will focus on the main themes emerging from the study integrating the potential implications for speech-language pathology practice. early support as a foundation for the future the importance of early support as a basis to build a strong foundation for later learning was a key principle informing the development of the programme and the overall ethos of the organisation. this was evident in the ways in which participants reflected on the programme: isaac: ‘at lofob, it’s a foundation, i’d say it’s laying a foundation for them.’ this early support is realised through focussing on parental engagement and support so that parents and caregivers are able to support their child’s development in the home before entering the formal schooling system. through this mechanism, lofob supports children and their families through a critical period of rapid child development and functions to support early transitions from the home to more formal schooling through their home-based programme. the principle of early support is coupled with a focus on capabilities, independence and functionality which is clearly emphasised through the perspectives of the leadership, staff and parents. the movement away from the focus on disability towards the capabilities signals an intentional emphasis on using the strengths and capabilities of the child to support overall development (mitra 2006). for communication, it therefore signals a movement away from focussing on vision towards other modalities that are central to supporting the development of communication for children with vi and b (rattray & zeedyk 2005). this perspective is consistent with the movement in disability studies that challenge the disothering of otherwise forms of doing and being (henner & robinson 2023). white paper 6 which focusses on building an inclusive education system acknowledges that all children learn differently and places emphasis on providing support at various levels, using different methods, to maximise the participation of all learners (department of education 2001). in working towards inclusive education, what should integration look like? do learners require intensive teaching to lay a foundation for later learning – that is building early capabilities to negotiate a sighted world as a prerequisite for an inclusive education model? through supporting these critical transitions for children, lofob is seeking to bridge the gap between the child’s capabilities and the expectations of the schooling system. an important part of realising the goals and values of white paper 6 is the conscientisation of the dominant ableist framings embedded in the schooling system that make integration a challenge (walton & mckenzie 2020). in extending this support, there may be further opportunities for lofob to support other critical transition periods for children like between primary school and high school. supporting communication through occupation participants spoke about the importance of engaging children in exploring their environment through multimodal experiences, with particular emphasis on allowing the child to engage in multiple occupations within their daily lives. the participants reflected on the importance of play as a means to support growth and development. communication, as an integral part of engaging in occupations like play, was therefore embedded as part of the programme through its focus on allowing the child to explore their environment. as humans, to engage meaningfully in occupations (ways of doing) in everyday life, communication is central (peters et al. 2023). communication was therefore more covertly supported through occupation, particularly with the early communication supports. interestingly, exploring communication through doing, in which the participants placed emphasis on engaging with the activity itself, drew into sharper focus the importance of alternative forms of communication that are deeply meaningful for children with vi and b. a significant emphasis was placed on understanding how exploring objects through a combination of tactile, olfactory, visual and auditory cues allowed the child to develop an understanding of their environment. while the literature focussing on visual impairment and blindness has placed emphasis on tactile modalities (peltokorpi et al. 2023; rattray & zeedyk 2005), the study highlights the importance of using multiple means of sense-making in shaping and supporting communication. such learning, we argue, is not only beneficial for our understanding of communication development for children with vi and b but can also enhance the kinds of support offered to all children. shifting the dominant perspective on communication through a sighted world towards an emphasis on languaging and valuing all that helps us to make meaning (henner & robinson 2023) has the potential to strengthen communication for all. beyond the tactile, visual and verbal modalities highlighted in the findings, parents alluded to the importance of songs, radio and music for their children. while not a central feature of the parent narratives, we argue for the importance of music as a way to support early learning, interaction and connection (metell 2015) which can provide opportunities for children to make sense of their environment. the importance of music for meaning-making can be strengthened through the lofob programme and for slps, it signals an opportunity to use music as a means to support early communication development (knight & rabon 2017). more overt emphasis was placed on communication when preparing children for early literacy development where participants discussed the early tactile supports necessary to support later literacy development. we argue that more overt exposure and support for communication, particularly early supports, could be programmed into the practice to further build on the current communication supports offered through the programme. for example, slps could work with organisations to strengthen their organisational capacity for programmatic support for communication development through occupation as opposed to solely focussing on direct intervention. strengths and limitations of particular strength for the study was the inclusion of a researcher with visual impairment in the data collection, analysis and write-up of the article. using her positionality and reflecting on her experiences, she was able to provide deeper insight into the key aspects of communication and its support. we acknowledge the impacts of covid-19 on the data collection process which limited access to participants and had significant impacts on the core contributions of lofob’s home-based programme. we are therefore acutely aware of the contextualised nature of the findings and emphasise the importance of understanding the findings in relation to the social impacts of the pandemic. implications for the implications, we reflect on the meaning and contribution of the article for slp. for communication, a focus on capabilities illuminated the importance of multimodal, multisensory supports through occupation as central to development for children with vi and b. these findings are significant as they signal the importance of appreciating the complexity of communication highlighting that for all children supporting communication goes beyond visual and written modalities. for the profession of slp, it signals an opportunity to expand our approach to supporting communication to include other forms, shapes and mediums of communication in our practices. conclusion the study documented a home-based programme for children with vi and b with specific emphasis on how communication was supported through its offerings. through the case study, it was clear that the ethos underpinning lofob’s commitment and contribution to the vision-impaired community significantly influenced its key stakeholders, the activities and services offered and the opportunities for communication. the emphasis on capabilities, in(ter)dependence and functionality and challenging normativity, echoed through the contributions of parents and were evident in the structure and focus of the individual and group engagements. acknowledgements the authors would like to acknowledge the contributions of the research participants and thank the organisation lofob for their willingness to partner with the authors on this research study. competing interests the authors reported that they received funding from national research foundation south africa which may be affected by the research reported in the enclosed publication. the authors have disclosed those interests fully and have implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions d.d.v. collected the data and shared insights based on her own experiences with disability, particularly regarding people with vi and b. d.d.v., k.a., h.k. and a.b. contributed to the data analysis and the overall framing of the article. k.a. led the writing of the article, while h.k. supported its conceptual development. a.b. provided additional insights into the organisation and contextualisation of the findings. funding information this article was supported by the national research foundation of south africa (grant number: 129248). data availability further details about the data that support the findings of this study are available on request from the corresponding author, k.a. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references ahmed, s.k., 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education: yin, merriam, and stake’, the qualitative report 20(2), 134–152. https://doi.org/10.46743/2160-3715/2015.2102 reviewer acknowledgements open accesshttp://www.ajod.org page 1 of 1 we would like to take this opportunity to thank all reviewers for the african journal of disability, volume 1: alister munthali amelia van der merwe anita ghai anlia pretorius arne h. eide ashraf kagee benjamin m. meier bob mash brian watermeyer bryson saulo candice hendricks catherine ward charlotte capri chiwoza bandawe chrisma pretorius cindy wiggett-barnard colleen adnams colleen howell crick lund d. hoy daniel mont daniel rhind david meyer deon de bruin deon meiring edward bell elelwani ramugondo elizabeth ekirapakiracho eric a. friedman ermien van pletzen erna alant estelle swart eva f. kittay federico balague frances o. daaku francie lund gubela mji hans reinders harsha kathard hasheem mannan helene loxton 77 ikechukwu nwanze indumathi rao jane n. erin jeanine braithwaite jennifer jelsma jill hanass-hancock jo vearey joao furtardo john joska jonathan crush jotham dhemba judy mckenzie julian may julie claassens jyothi a. chabilall karen grimmer-sommers karen daniels karen p.y. liu kathleen a. silverman lana van niekerk lauren wild leila patel len hansen leslie london lindsey nicholls lorna jacklin m. wickenden mac maclachlan madeleine duncan marcia lyner-cleophas margaret wazakili margie schneider marion heap martha geiger martin schwellnus mary ashi michael g. palmer mitch loeb mutamad amin nhlanhla mkhize nick watson nico koopman nicola martin nora groce ockert coetzee owusu ansah patrick devlieger paul courtright peter blanck petra engelbrecht poul rohleder quinette louw rachelle buchbinder reinette popplestone rene loewenson robert gould romy parker rosemarie garland-thomson roy mcconkey ruth watson sandy lazarus scott drimie shadrack gutto sheila riddell siva moodley sophie mitra sulina green sumaya mall susie miles tania van rooyen taryn young theresa lorenzo timothy r. stones timothy r. elliott tobias van reenen tom shakespeare tom reynolds tsitsi chataika ume chikte valerie sinason vic mckinney should names have inadvertently been excluded from this list the publisher apologises and undertakes to amend the exclusion in the next issue. in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on www.ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website and register as a reviewer. to access your details on the website, you will need to follow these steps: 1. log into the online journal at http://www. ajod.org 2. in your ‘user home’ [http://www.ajod.org/ index.php/ajod/user] select ‘edit my profile’ under the heading ‘my account’ and insert all relevant details, bio statement and reviewing interest. 3. it is good practice as a reviewer to update your personal details regularly to ensure contact with you throughout your professional term as reviewer to the african journal of disability. please do not hesitate to contact me if you require assistance in performing this task. suzanne taylor submissions@ajod.org tel: +27 (0)21 975 2602 fax: +27 (0)21 975 4635 african journal of disability abstract introduction problem statement research objectives literature review methodology results discussion recommendations acknowledgements references about the author(s) tafadzwa rugoho livelihoods programme, leonard cheshire disability zimbabwe, zimbabwe france maphosa department of sociology, university of botswana, botswana citation rugoho, t. & maphosa, f., 2017, ‘challenges faced by women with disabilities in accessing sexual and reproductive health in zimbabwe: the case of chitungwiza town’, african journal of disability 6(0), a252. https://doi.org/10.4102/ajod.v6i0.252 original research challenges faced by women with disabilities in accessing sexual and reproductive health in zimbabwe: the case of chitungwiza town tafadzwa rugoho, france maphosa received: 09 dec. 2015; accepted: 22 aug. 2016; published: 26 may 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: women with disabilities in zimbabwe face numerous challenges in accessing sexual and reproductive health. cultural belief still regards them as not sexually active. the government has also failed to promote policies that facilitate access to sexual and reproductive services by women with disabilities. objectives: the reseach objectives were to explore the challenges faced by women with disabilities in accessing sexual and reproductive health in zimbabwe. method: the data were gathered using in-depth interviews with 23 purposively selected respondents. thirteen women had physical disabilities, five were visually impaired, three were deaf and two were stammering. the respondents with physical disabilities were using wheelchairs, walking frames, prosthesis, crutches and caliper shoes. the participants’ ages ranged from 18 to 45 years. all interviews were transcribed and translated verbatim into english, and passages were extracted from the transcripts. key themes and concepts were identified and coded to offer a rich framework for analysis, comparisons and presentation of the data. results: negative perceptions of health personnel towards people with disabilities, disability-unfriendly infrastructure at health facilities and absence of trained personnel for people with disabilities (sign language) are some of the challenges involved. conclusion: the government, in partnership with other stakeholders, should address challenges faced by women with disabilities when accessing sexual and reproductive health services. non-government, private hospitals and profit-making organisations should join hands with government in funding health requirements for women with disabilities. introduction there has been global attention on sexual and reproductive health recently. the united nations convention on the rights of persons with disabilities (uncrpd) which became part of international law stipulates that governments should guarantee access to sexual reproductive health to people with disabilities (united nations 2007). global studies prove that women with disabilities still face a plethora of challenges in accessing sexual and reproductive health services (boezaart 2012). institutionalised discrimination, isolation and stereotyping of women with disabilities continue unabated (rugoho & siziba 2014). violations of the sexual and reproductive rights of the women with disabilities have been condoned in developed and developing nations. governments and development partners, especially in developing countries, have failed to offer affordable and accessible sexual and reproductive health facilities (groce et al. 2009; swartz et al. 2009). women with disabilities are still viewed as people who cannot take part in sexual and reproductive activities as observed by swartz et al. (2009) and groce et al. (2009). negative attitudes towards sexual and reproductive rights of women with disabilities still exist. women with disabilities are still perceived as non-sexual or as not having the capacity to engage in sexual activities (chikumbu 2014). that they are viewed as broken objects has made their plight remain on the periphery of policymakers (choruma 2007). the population of persons with disabilities is estimated to constitute 15% of the world population (who 2011). it is further estimated that 19% of women with disabilities are domiciled in third world countries. these women constitute three-quarters of the women living in absolute poverty globally. these women are excluded from economic empowerment initiatives on account of their gender and their disability (rugoho & siziba 2014). women with disabilities are more prone to sexual abuse and victimisation because they are considered to be weak and hence easy targets (rugoho & maphosa 2015; shuttleworth 2007). the sexual rights of women with disabilities are further compromised by factors such as negative attitudes of family and society, and cruel religious and cultural practices (rugoho & maphosa 2015). the negative attitudes also cascades to health providers and medical staff (bath 2008; burgen 2010). the uncrpd sexual and reproductive rights have become part of the fundamental human rights (un 2007). these rights are also recognised under the constitution of zimbabwe, which guarantees everyone his or her sexual and reproductive rights (government of zimbabwe [goz] 2013). under the uncrpd, women with disabilities are also provided the opportunity to start their own families without interference from family or the state. problem statement zimbabwe still faces challenges in the provision of sexual and reproductive health services. in an effort to address challenges in sexual and reproductive health, the national reproductive health policy of zimbabwe (2006) was developed by the goz. however, the sexual and reproductive needs of women with disabilities were not captured in the policy. as noted by choruma (2007), the needs of persons with disabilities, including women with disabilities, still remain a peripheral issue. people with disabilities continue to be treated as second-class citizens (rugoho & siziba 2014). women with disabilities face barriers in accessing sexual and reproductive health services. it is against this background that the study sought to understand the challenges faced by women with disabilities in accessing sexual and reproductive health services in zimbabwe. research objectives the main aim of the study was to explore the challenges faced by women with disabilities in accessing sexual and reproductive health in zimbabwe using chitungwiza as a case study. the study was guided by the following specific objectives: to examine the challenges faced by women with disabilities in trying to access sexual and reproductive health. to find sources of information on sexual and reproductive health accessible to women with disabilities. to explore strategies that can be adopted to improve sexual and reproductive health for women with disabilities. literature review accessing sexual and reproductive health has become a fundamental right in the 21st century, and this has also posed a global challenge (mprah 2013). africa and other parts of the third world are battling to provide sexual and reproductive services due to other pressing issues (glasier et al. 2006). women with disabilities have been noted by the world health organization (who) to be the most disadvantaged and alienated group when it comes to accessing sexual and reproductive health services (who 2009). the who noted that the chief challenge is the community’s negative attitudes towards people with disabilities, which have been institutionalised and have caused untold pain to women with disabilities. prejudice, stereotyping and discrimination against people with disabilities have resulted in serious violations of their sexuality and reproductive rights. practices such as coerced sterilisation and forced administration of lifelong contraceptives are still performed on women with disabilities without their consent. women with mental disabilities are more prone to forced abortions and sterilisation (mykitiuk & chadha 2011). in most documented cases, relatives decided on behalf of women with disabilities without their consent (ouellette 2008). in africa, including zimbabwe, people with disabilities still continue to be treated as second-class citizens (rugoho & siziba 2014). they are not expected to indulge in sexual activities (chikumbu 2014). rugoho and maphosa (2015) found that african communities perceive people with disabilities as hypersexual. discussing with them sexual and reproductive issues would trigger their sexual feelings and they would not be able to control their sexual desires. however, for hunt and de mesquit (2006), european societies feel pity and sorry for people with disabilities and often conclude that their physical appearance would not allow them to have sexual intercourse. they are viewed as sick people who need to heal first before they could indulge in sexual activities. sexual activities would harm them and further disable them. mgwili & watermeyer (2006) further note that south african communities view people with disabilities as not having enough mental stamina to start or be involved in any meaningful sexual relationships. women with disabilities are often thought of as not being strong enough to carry pregnancies as observed by hunt and de mesquit (2006). blackburn (2002) argues that communities do not have enough knowledge and information about disability issues. the challenges faced by women with disabilities in accessing sexual and reproductive health services are multifaceted; they are caused by economic, political, cultural and educational factors. who (2013) and groce et al. (2009) conclude that women with disabilities need greater access to sexual and reproductive health services than their able-bodied counterparts. their disability also increases their vulnerability to sexual abuse (rugoho & maphosa 2015). groce et al. (2009) found enough evidence to conclude that women with disabilities are three times more likely to be victims of sexual, emotional and physical abuse. with all that compelling evidence, governments have not formulated policies to increase access to sexual and reproductive health for women with disabilities (groce & trasi 2004). studies conducted by job (2004) and prilleltensky (2004) found out that adolescents with disabilities are not given the opportunity to learn about sexual and reproductive health as compared with their peers because teachers, parents and counsellors fear to discuss sexual and reproductive health with them because they are perceived to be non-sexual. as such, they miss out on basic vocabulary to describe changes in their bodies (groce, yousafzai & maas 2007; who 2009). deaf women and women with physical disabilities face similar challenges (who 2009). development of literature in braille and other formats is still a challenge in developing countries. roberts (2006) notes that deaf women are usually not given proper information owing to challenges in conversing in sign language. fedorowicz (2006), heyederick (2006), wilson & monaghan (2006) and groce et al. (2007) also observe that there is little literature available for deaf women in the area of sexual and reproductive health. medical staff in developing countries are usually not trained in sign language and often find it difficult to communicate with deaf women when they visit health centres (margellos-anast, estarziau & kaufman 2006). the marginalisation of women with disabilities in sexual and reproductive health services presents a challenge in the global fight against hiv and aids. initiatives and policies that embrace the sexual and reproductive health of women with disabilities are essential in fighting the spread of hiv and aids (bankole & malarcher 2010). sexual and reproductive health needs of women with disabilities need to be seriously taken on board by governments. who (2004) also notes the physical barriers that prevent women with disabilities from accessing sexual and reproductive health. such barriers include lack of clear directions and services on offer, crowding and lack of privacy. mulumba et al. (2014) also observed similar challenges among women with disabilities in uganda. in uganda, ahumuza et al. (2014) found that the negative attitudes of health care providers made it difficult for women with disabilities to access sexual and reproductive health services. health staff would use abusive and insulting language when dealing with women with disabilities who were pregnant. they often assume that women with disabilities are not sexually active. lack of confidence, shyness, poor relations with health staff and low literacy levels are some of the challenges encountered by women with disabilities in cambodia (senderowitz, hainsworth & solter 2003). holness (2013) also found that women with disabilities still continue to face prejudice and discrimination daily. this has negatively affected their access to sexual and reproductive health services. in south africa, the practice of forced sterilisation is still rampant. holness (2013) cites court cases that prove that women with disabilities have been forced to under go sterilisation. human rights watch (2013) argues that involuntary sterilisation done on women with disabilities is an act of violence, and it is degrading to the human being. canadian sexual and reproductive health policies discourage women with disabilities from participating in procreation activities (gibson & myklitiuk 2011). in canada, it is largely assumed that women with disabilities will transfer their disabilities to the unborn child; hence, to break this circle of having children with disabilities women with disabilities are discouraged from giving birth. they are often assumed to have no capacity to take care of the children. court cases in america and britain also prove that forced sterilisation among women with disabilities exists in those countries (rioux & patton 2011). in australia, research has demonstrated that forced sterilisation still exists, and in many such cases, consent is given by parents (brady, briton & grover 2001). in 2007, the world made a bold statement in trying to promote the rights of people with disabilities. the world saw the birth of uncrpd, which sought to address all the injustices being faced by people with disabilities (un 2007). the convention gave elaborate rights to people with disabilities, including accessing sexual and reproductive health. the right to sexual and reproductive health was clearly articulated in article 23, which is well supported by article 12 which established that people with disabilities have to be recognised everywhere as persons with standing before the law. they should also enjoy equal and just treatment. the convention on the rights of persons with disabilities (crpd) further guarantees that women with disabilities should be given a voice in determining their own medical choices. it further protected them from forced sterilisation. the crpd recognised that forced sterilisation and forced abortion for women with disabilities without their consent amounts to violation of their human rights. the committee on the elimination of discrimination against women (cedaw) in 1999 also outlawed the practice of forced sterilisation of women with disabilities. this was further clarified by the same committee in 2010 when it declared that, regardless of whether women have disabilities or not, sterilisation should not be done without informed consent (cedaw committee 2010) in zimbabwe, sexual and reproductive health issues came to the limelight in 2006 when the government formulated the national reproductive health policy. the policy offers services such as maternal health, family planning, treatment for sexually transmitted diseases including hiv and aids and adolescent reproductive health. surprisingly the policy proffered few interventions towards women with disabilities. one of the main reasons for this omission is that disability issues are still regarded as charity issues; hence, funding for sexual reproductive health of women with disabilities is still a challenge (kabzems & chimedza 2002). very few studies have been done in zimbabwe on sexual and reproductive health among women with disabilities; hence, very little is known about the challenges they face in accessing sexual and reproductive health. much research on sexual and reproductive health has focused on youth and people with hiv and aids (wilcher & cates 2009). in uganda, also a developing country, some policy frameworks have been in place to include and mainstream disability issues across sectors (khumalo 2008; lang 2009). in zimbabwe, a number of non-government organisations such as leonard cheshire disability zimbabwe, disability, hiv and aids trust and deaf zimbabwe trust are working with women with disabilities to help them access sexual and reproductive health. however, they are limited to advocacy and awareness-raising issues. methodology study site the study was conducted in chitungwiza town which is about 25 kilometres from harare, the capital city of zimbabwe. chitungwiza was chosen because it is a densely populated town which also houses a number of organisations for people with disabilities. in selecting respondents, a woman with disabilities was considered the focal person as she had already established a rapport working with disabled women in chitungwiza. she was also an expert in sign language. she was also knowledgeable about the area. study design and sample in gathering data, the researchers adopted a qualitative research design. the data were gathered using in-depth interviews with 23 purposively selected respondents. thirteen women had physical disabilities, five were visually impaired, three were deaf and two were stammering. the respondents with physical disabilities were using wheelchairs, walking frames, prosthesis, crutches and caliper shoes. the participants’ ages ranged from 18 to 45 years. the study specifically targeted women who were older than 18 years of age because at age 18 they reached the age of consent, which gave them the right to consent to sexual activities and to make their own choices about sexual and reproductive health issues. at this age, they would have the right to consent to such a study. seven participants were married while 13 were single mothers and 4 were not yet married but were in sexual relationships. out of the 17 respondents who were not married, 8 of them reported that they were staying on their own and 9 reported to be staying with relatives. the languages used in the research were shona, a local language which was understood by many participants, and sign language for the three deaf participants. all participants were able to read and write. they had all completed primary education. data collection and processing in-depth interviews were deemed to be the most suitable data collection method as this study required detailed accounts of the subjective experiences of women with disabilities in accessing sexual and reproductive health services. data collection lasted three weeks. a dicta-phone was used to record all the interviews. the researchers also took handwritten notes. the interviews were digitally recorded and field notes were taken during the interviews with the consent of the respondents. each interview session lasted between 45 minutes and 1 hour. all interviews were transcribed and translated verbatim into english, and passages were extracted from the transcripts. key themes and concepts were identified and coded to offer a rich framework for analysis, comparisons and presentation of the data. the respondents’ individual experiences, comments and opinions were then categorised according to recurring selected themes from all the interview transcripts. ethical considerations the researchers were aware that sexual and reproductive health and disability are sensitive subjects and therefore observed and adhered to strict ethical conduct throughout the study. before carrying out the interviews, preliminary meetings and telephonic discussions were held with the prospective participants where the researchers explained the nature and purpose of the study and informed respondents that their participation was entirely voluntary and it was within their rights to withdraw from the study at any time without having to give any explanation. the prospective respondents were also assured that the information they would give would be treated with strict confidentiality and that they would remain anonymous. they were informed that information would be used only for academic purposes and not for any other purposes. the use of shona, which is a local language, ensured that all respondents were very conversant and that there were no ambiguities in communication. it made it easy for the respondents to share their experiences. results the study found that women with disabilities experience a number of challenges in accessing sexual and reproductive health services in chitungwiza. the following sections discuss the barriers identified. attitudinal barriers negative attitudes towards women with disabilities made it difficult for them to visit health centres to seek information and services on their sexual and reproductive health. female nurses were cited as major culprits in insulting women with disabilities when they visit hospitals when they are pregnant or present for treatment. this was explained by a 33-year-old mother with physical disabilities of four children and working as a vendor who said: ‘i visited the clinic when i was pregnant with my fourth child. the nurses said very hurtful things to me. they said i was giving birth like a dog. they said they pitied the men who introduced me to sex because i was no longer able to control my sexual feeling. i will never go back to that clinic again.’ similar sentiments were also expressed by another 29-year-old pre-school teacher, visually impaired, who said: ‘i went to look for family planning methods at the clinic and the nurses told me that sex was not meant for the disabled, hence there was no need for me to get contraceptive methods.’ physical barriers many clinics and hospitals are located far away from the residences of many of the respondents. some claimed that they had to walk long distances to get to the nearest clinic. for those who rely on personal aid for mobility, the process of accessing the nearest health facility was expensive because on public transport they had to pay for two people – themselves and their assistants. in some cases, they pay for their wheelchairs as well. inaccessible buildings and facilities were also cited as impediments to access sexual and reproductive services. many health centres in zimbabwe, including those in chitungwiza, were not constructed with people with disabilities in mind. a 39-year-old woman who injured her spine in a car accident and is now using a wheelchair for mobility said: ‘the clinics do not have ramps to help those on wheelchairs like me. one day i decided to go to the clinic to ask for information on sexual and reproductive health. i had problems negotiating my way around the buildings. when i asked for help the nurses told me that they could not help and that i should have come with my relatives to aid me. i was so humiliated and frustrated that i developed a headache for which i ended up getting treatment and forgot about the information on sexual and reproductive health.’ the respondents also cited toilets which are always dirty and not user-friendly for people with disabilities as another challenge they face when they visit health centres to seek sexual and reproductive health services. with zimbabwe facing a water crisis, hygiene is often compromised. many people have died in the country from cholera and related diseases. dirty toilets at public health institutions present a special challenge to women with disabilities. this point was aired by a 42-year-old female participant who uses a wheelchair for mobility. ‘the toilets are a health hazard … you can die from using those toilets. they are always dirty and that makes life very difficult for people with disabilities. can you believe that i had to step on human faeces and urine with my wheelchair for me to reach the toilet seat? i got diarrhoea a few days after that and i suspect i got it from contaminated hands.’ a 20-year-old visually impaired female participant also stated: ‘how does one expect a blind person like me to use a dirty toilet with human faeces and urine flowing everywhere? i once stepped on human faeces and was unaware of it, only to be told by other people. it is so embarrassing.’ a secondary schoolgoing 19-year-old participant who was paraplegic and used crutches for mobility also had this to say: ‘sometimes patients are sometimes asked to bring their own water if they want to use the toilets. no water, no toilet! this presents a big challenge for women with disabilities who are unable to carry water containers because of the nature of their disabilities.’ the cost of services respondents stated that health centres, including those that are state owned, and local authorities charge consultation fees of amounts ranging from us$5–20. besides the consultation fee, patients also have to pay for the services and supplies they receive. before the economic meltdown that began in 2000, women with disabilities used to receive social grants from the disability fund administered by the ministry of social welfare. the disbursement of the grant has become increasingly erratic with some beneficiaries not having received any payment for the past 10 years. participants highlighted that their inability to pay user fees had limited and in some cases entirely curtailed their visits to medical facilities. another 24-year-old female participant with physical disabilities who stayed with relatives said: ‘they want us to pay ten dollars consultation fees at clinics and hospitals. where do they think we will get such money from? i am not employed. i stay with relatives and it is difficult for me to ask them for money to go and seek reproductive services because they are already taking care of a lot of my needs.’ she was supported by another 20-year-old single female visually impaired participant: ‘many disabled women are not employed. employers in government and the private sector are reluctant to give jobs to disabled women, yet hospitals are not ready to treat us without paying. it’s not that i am against the idea of paying for sexual and reproductive health services. some of us simply cannot afford it. we have other needs such as accommodation and food and all the little money that we get is even barely enough for those basic needs. when one is pre-occupied with meeting basic daily needs, going to a hospital to pay for sexual and reproductive services receives very low priority.’ lack of privacy privacy for women with disabilities was also mentioned as a deterrent among these women while visiting health centres. the participants felt that their privacy was often violated by health staff. this was pointed out by a 21-year-old visually impaired participant working as as a beggar in town who stated: ‘i developed a boil close to private genitals and i went to the hospital. during the examination with the nurse at the hospital other people had access inside the examination room. they think just because i am blind i did not need privacy. i could hear their footsteps as they were getting in and out of the room. it made me uncomfortable. sometimes other nurses would come and they would start discussing about me.’ this was also corroborated by another 29-year-old visually impaired woman who is employed as a teacher by a private school: ‘when you are blind, they don’t care about privacy.… when i was pregnant, i would be examined by dozens of people, including non-medical personnel in the hospital because the nurses would invite their friends in the consultation room.’ respondents pointed out that health workers did not know how to relate to people with disabilities, especially in the presence of their helpers. most often they communicate to the person with a disability through the third person instead of communicating directly with the person concerned. this limits the extent to which women with disabilities could freely share confidential sexual and reproductive health information with health workers. this sentiment was expressed by a 27-year-old woman amputee who uses a wheelchair: ‘the last time i visited the clinic the nurses were asking my friend about what i wanted instead of directing the questions to me. i felt they treated as a child because i am disabled. i felt humiliated because my friend ended up knowing about the condition that i was seeking treatment for.’ another 19-year-old female, who uses a wheelchair and participates in wheelchair baske ball, had this to say: ‘they ended up discussing with my mother the most suitable family planning method without me. i was left seated as a zombie while they discussed issues that concerned my health.’ lack of sign language women with deafness highlighted that their biggest challenge was nurses who understood sign language. in zimbabwe, most of the professionals do not have sign language training. this prevents deaf people from getting enough and relevant information on sexual and reproductive health. a 26-year-old deaf female participant who had five children said: ‘for me, i think the doctors and nurses always guess what we are saying. they can’t talk to us and how do they expect to help us. it’s a waste of time because of the language barrier.’ this was supported by another 35-year-old deaf person staying with relatives and working as a voluntary sign language teacher who asserted that: ‘if you are deaf, they communicate with you through your interpreter. the problem with this is when one wants to discuss issues that are so sensitive and confidential with the nurse that one does not want the interpreter to know.’ another 28-year-old deaf participant with a university degree said: ‘i was made to write what i wanted. then they complained that they could not understand what i had written. the whole thing ended up being a drama because more than five nurses were called to help. i felt very embarrassed and i do not wish to visit that hospital again.’ women with disabilities also felt that they were not being given enough attention by doctors and nurses when they visited the hospital and clinics. a woman with a stammering problem stated that owing to the large numbers of people they have to deal with, doctors and nurses get impatient with people who have speech problems. as a result, people with speech disabilities do not get the opportunity to fully explain their problems. restricted access to information the participants indicated that women with disabilities obtained information on sexual and reproductive issues from various sources, including health institutions, schools, parents, social media and peers. however, most of these sources of information have aspects that make them inaccessible to women with disabilities. people with disabilities in zimbabwe do not have equal chances of going to school as their able-bodied counterparts; hence, they do not get a chance to be taught about sexual and reproductive health in schools. parents often do not educate their children with disabilities on sexual and reproductive issues. social media, which has become a popular and cheap way of getting information about various issues, has offered women with disabilities a platform to discuss sexual and reproductive health issues with their peers. a 20-year-old female vendor using artificial limbs to walk said: ‘i am a member of a whatsapp group for disabled women. this is where we usually discuss various issues that affect us. in my group there are some disabled women who are knowledgeable about sexual and reproductive health issues. i get most of the information on sexual and reproductive issues from my whatsapp friends.’ another social medium where women with disabilities get information on sexual and reproductive health is facebook. this was also corroborated by a maid who is 26 years old female with a stammer: ‘facebook has sites which one can like and follow. from these sites one can get general information on sexual and reproductive health. we also surf some information from google and wikipedia. the internet has helped us a lot though some information cannot be authenticated. we use our phones to connect to the internet. however, some of my friends cannot access the internet because they do not have phones that are compatible with internet.’ friends are also a source of information on sexual and reproductive health for women with disabilities. respondents highlighted that they ask their friends a lot about sexual and reproductive health. a 28-year-old female deaf participant said: ‘our friends who appreciate our disabilities are always willing to educate us on a number of issues including sexual and reproductive health.’ other social groupings such as church groups and social clubs are important sources of information on sexual and reproductive health. while women with disabilities belong to and benefit from inclusive social groupings, they expressed feelings of marginalisation in some of these groups. a 39-year-old female airtime vendor participant who is calipered added: ‘i belong to a women’s group in our church in which we discuss a lot of things. i have realised, however, that when i am present members deliberately avoid discussing sexual and reproductive health issues.’ discussion the findings of the research prove that women with disabilities face multiple challenges in their effort to reach sexual and reproductive health services. as noted by various authors, this has become a global challenge (mprah 2013). negative attitudes still prevail the world over. access to information is vital in making decisions, especially in the area that concerns one’s health. women with disabilities, especially the deaf community, lack access to information. evidence from this study demonstrates that women with disabilities have little access to formal information. their right to information is restricted. mprah (2013) in his studies on the deaf women in ghana found out that the chief barrier to accessing sexual and reproductive health was the restricted access to information. there are many barriers faced by women with disabilities in trying to get access to sexual and reproductive health information and services. deaf women also pointed out that they do not have access to informative information. this was also supported by women who are visually impaired who highlighted the unavailability of braille information on sexual and reproductive health. policy inclusion is another good alternative of guaranteeing access to everyone. when enacting policies, government and development partners should thrive to include issues that affect people with disabilities. in a study done by ahumuza et al. (2014), it was found that in uganda, issues that affect women with disabilities with regard to getting access to sexual and reproductive health are well articulated in the policy. this had allowed health service providers to conform to the national policy. the zimbabwean policy on sexual and reproductive health does not capture issues that affect women with disabilities. the uncrpd (2007) recognised the challenges faced by women with disabilities and called for governments to include people with disabilities when enacting sexual and reproductive health. physical challenges continue to pose a challenge to women with disabilities when visiting health centres. the uncrpd (2007) had called on the government to build buildings with ramps and elevators so that women with disabilities could gain easy entrance. in zimbabwe, women with physical challenges highlighted physical barriers and clean toilets as a hindrance when visiting health facilities. these physical hindrances are also compounded by the attitudes of health workers at the health centres who are unable to understand the issues faced by people with disabilities. evidence demonstrates a violation of privacy of women with disabilities. health personnel do not understood sign language; however, a sizeable number of women who are deaf need access to primary health care. awareness on issues that affect women with disabilities in accessing sexual and reproductive health care is also lacking. recommendations women with disabilities are sexual beings. they need information and services for sexual and reproductive health for them to make informed choices and manage their sexuality and reproductive health needs. government in partnership with other development agencies and the community should make efforts to improve the sexual and reproductive rights of women with disabilities. based on the findings of this study, we make the following recommendations: the government, in partnership with other stakeholders, should address challenges faced by women with disabilities when accessing sexual and reproductive health services. non-government, private hospitals and profit-making organisations should join hands with government in funding health requirements for women with disabilities. as enshrined in the national constitution, the government and other development partners should work hard to guarantee access to sexual and reproductive health for women with disabilities. infrastructure must be improved to suit the needs of people with disabilities, particularly women with disabilities. ramps and disabled-friendly toilets must be constructed at all public places, especially hospitals and clinics. when constructing new clinics and hospitals, it should be recommended that these new places be disabled-friendly. health training institutions and other public institutions should teach sign language to their staff to be able to interact with the deaf. a mechanism needs to be put in place to introduce sign language. consultation fees need to be lowered to allow women with disabilities to reach health facilities. more information platforms for women with disabilities should be established. the government should fund programmes that particularly target deaf women so that they can also get information about their health. organisations of women with disabilities must be capacitated to offer information on sexual and reproductive health. political participation of women with disabilities must be encouraged. thus, political parties should be encouraged to embrace women with disabilities within their political structures. once they are politically active, they can better voice the issues that affect them. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.r. provided the draft document and did the primary data collection. f.m. provided the overall 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61/106 un doca/res/61/106 (24 january 2007)’, un, new york. wilcher, r. & cates, w., 2009, ‘reproductive choices for women with hiv’, bulletin of the world health organization 87, 833–839. https://doi.org/10.2471/blt.08.059360 wilson, a. & monaghan, l., 2006, ‘hiv/aids and the deaf community’, international journal of deaf studies 22(1), 1–10. world health organization (who), 2004, reproductive health strategy, to accelerate progress towards the attainment of international development goals and targets, who, geneva. world health organization (who), 2009, promoting sexual and reproductive health persons with disabilities who/unfpa guidance note, who, geneva. world health organization (who), 2011, international classification of functioning, disability and health (icf), who, geneva. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) noluvuyo seti division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lieketseng y. ned division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation seti, n. & ned, l.y., 2025, ‘experiences of coping and adjusting to lower limb prosthesis use in the eastern cape province’, african journal of disability 14(0), a1706. https://doi.org/10.4102/ajod.v14i0.1706 original research experiences of coping and adjusting to lower limb prosthesis use in the eastern cape province noluvuyo seti, lieketseng y. ned received: 26 feb. 2025; accepted: 05 sept. 2025; published: 15 oct. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: lower limb amputation is the surgical removal of a limb, typically because of trauma or chronic illness. a prosthesis can aid recovery, but in south africa’s eastern cape, access to prosthetic rehabilitation services remains limited. objectives: the aim of this study was to describe and explore experiences of lower limb prosthetic users in coping and adjusting to prosthesis use in the or tambo district. method: using interpretative phenomenological analysis, this qualitative study purposefully sampled five lower limb prosthesis users. data were collected through semi-structured face-to-face interviews conducted in participants’ homes. the interviews were transcribed and analysed using interpretive phenomenological analysis, allowing for an in-depth exploration of themes related to adaptation and coping. results: three themes emerged: (1) facing psychological and identity adjustments, participants reported a range of emotions from shock to happiness, (2) navigating daily societal realities and perceptions, emphasising the influence of stigma and support on prosthesis user experience, and (3) learning to cope and receive support, focusing on adaptive coping strategies and support systems, including family and the community. conclusion: the findings underscore the need for comprehensive and accessible rehabilitation services that address physical, emotional and social challenges. tailored prosthesis designs for rural environments and community education programmes to reduce stigma are essential for improving user outcomes. contribution: this study advocates for holistic prosthetic care, emphasising ongoing support and proactive engagement with users’ experiences to improve quality of life and promote independence. keywords: prosthesis; lower limb amputation; rehabilitation; or tambo district; south africa. introduction lower limb amputation (lla) is the surgical removal of a limb because of trauma or chronic disease. holzer et al. (2014) highlighted that individuals who have undergone lla must adjust mentally, physically and socially to significant changes in their appearance and functioning. people’s responses to limb loss and prosthesis use are both complex and unique, shaped by a range of personal, clinical, social, physical and environmental factors (aydin et al. 2021). individuals frequently encounter psychological and social difficulties, including depression, hopelessness, low self-esteem, fatigue, anxiety, frustration, guilt, fear about their family’s future and, in some cases, even suicidal thoughts because of difficulties adapting to their new circumstances (dadkhah et al. 2013). beyond the immediate physical and emotional challenges, lla often leads to long-term socio-economic consequences (lee et al. 2020) as individuals may face job loss, financial instability and social isolation because of their reduced mobility and dependence on others. a study conducted in portugal by pereira et al. (2018) revealed that post-amputation life satisfaction was generally low. however, the most effective coping mechanism reported was the proactive adjustment to the new reality, whereas substance use was the least effective strategy. following the amputation, people frequently require a prosthetic device to assist them to regain mobility and improve their quality of life. a lower limb prosthesis is a custom-made artificial device designed to replace an amputated lower limb. in individuals with lla, the purpose of prosthesis intervention aims to regain ambulation as well as general functioning (haywood 2020). the artificial limb supports people to regain their mobility after having their lower limbs amputated and therefore can lead to increased independence (morgan et al. 2022; seth et al. 2022). unfortunately, in the eastern cape province and broadly in south africa, prosthetics and rehabilitation facilities remain inadequate, and numerous individuals are unable to progress to the stage of receiving the prosthesis for recovery (ennion & johannesson 2018). currently, the province has only three prosthetic centres (in umtata, east london and port elizabeth, respectively). drawing from her experience of working at bedford orthopaedic hospital in umtata, the first author learnt that, as prosthetists, they only issue prosthetic devices and do not always carry out follow-ups. as ennion and manig (2019) argue, the distribution of rehabilitative and artificial limbs within the south african public health sector is hampered by employee shortages, a scarcity of referrals, education and follow-up with patients, a shortage of qualified rehabilitation experts, insufficient training for healthcare professionals working in rural areas and a lack of funds. individuals who have undergone an lla possess numerous expectations regarding how a prosthetic device is going to impact their daily lives. research by mattick et al. (2022) and ostler, ellis-hill and donovan-hall (2014) reports that participants expected that the prosthesis would allow them to regain their sense of ‘normalcy’. their return to ‘normalcy’ was characterised by a physical appearance that corresponded with their sense of self, capacity and perception, among others, prior to the amputation. this included having the capacity to perform daily duties such as cleaning and preparing meals, along with the ability to work and provide for family members. cultural beliefs and perceptions were found to influence how individuals experience prosthesis use (mattick et al. 2022). studies documenting the experiences of users do not vary much from these expectations. for example, a study conducted in mpumalanga reports that prosthetic assistance proved to be important in enabling participants to engage in everyday duties while continuing to be active citizens in their communities (ennion & manig 2019). another study in kenya revealed that participants saw the possibility of receiving an artificial limb as an optimistic representation of a more promising future (mattick et al. 2022). the prosthesis allowed these individuals to resume previous activities, integrate into society and work and be less dependent on others. similarly, murray and forshaw’s (2013) study in the united kingdom showed that starting to utilise an artificial limb was a vital aspect of restoring a desired sense of self, including returning to employment or participating in everyday activities, like driving a car. the participants’ self-worth was subsequently derived through the self-efficacy and freedom that their prosthesis use enabled or facilitated. individuals that use a prosthetic must cope with and adjust to a variety of aspects, including shoe alternatives, reactions from relatives and close companions, sexuality, phantom sensations, stump sensibility, emotions, running, walking backwards, footsteps and distance covered by walking, comfort with the prosthesis, weight and dependability (norlyk et al. 2016). aydin et al.’s (2021) research indicates that active and task-oriented coping strategies, such as problem-solving, promote positive psychosocial adjustments, while emotion-focused coping and cognitive disengagement are associated with anxiety, depression and externalised hostility, impacting negatively on acceptance of disability. a study conducted in portugal reported that individuals’ acceptance and proactive adjustments remained the most utilised coping mechanisms, while substance use, such as alcohol or drug consumption to manage emotional distress or physical discomfort, was the least commonly utilised (pereira et al. 2018). considering methods of coping as a significant measurement, particularly in a rehabilitation programme, may improve patients’ quality of life and overall well-being (šosterič, burger & vidmar 2020). participants in ostler et al.’s (2014) study in the united kingdom addressed the necessity of having a positive mindset during rehabilitation, implying that if this positive mindset failed, there would be negative effects. this qualitative metasynthesis by ostler et al. (2014) highlighted the societal variable as playing a vital role in coping and adjusting. for example, societal acceptance, such as witnessing a positive attitude from friends and relatives, was cited as a significant contributor to coping and adjusting. the experiences of prosthesis users in coping and adjusting to prosthetic use are both complex and multifaceted, influenced by various physical, psychological and social factors. yet, it remains under-researched. specifically, there remains inadequate research about lower limb prosthesis users’ experiences of coping and adjusting throughout the african continent, including the eastern cape. documenting these experiences will bring to the forefront much-needed information from prosthetic users’ perspectives, which may positively influence service provision and follow-up support. therefore, this study sought to answer the question: what are lower limb prosthetic users’ experiences in coping and adjusting to prosthesis use in the or tambo district, eastern cape? research methods and design this study followed a qualitative methodology. the chosen study design was interpretive phenomenological analysis (ipa) – a design that seeks to provide perspectives on how a given individual, in a specific setting, makes meaning of a certain circumstance, rather than creating a generalisation of findings. interpretive phenomenological analysis is rooted in hermeneutic phenomenology, which focuses not only on describing lived experiences (smith & osborn 2007). as alase (2017) posits, ipa is often suitable for qualitative research when the aim is to explore and understand individuals’ lived experiences, perceptions and meanings attributed to a specific phenomenon. it is particularly valuable in fields such as health sciences, where researchers seek rich insights into subjective experiences of participants. this design was therefore chosen to uncover the experiences of individuals who are adapting to and using prosthetic limbs, with a focus on understanding their emotional, social and physical challenges and coping strategies throughout the process. research setting the research was conducted in the or tambo district of the eastern cape; it is one of the seven districts of the eastern cape province of south africa. this district is characterised by its rural and urban mix, with many communities living in locations that are remote and challenging for access to healthcare facilities and support services. or tambo district, within the wild coast region, is one of the four integrated sustained rural development programme sites in the eastern cape province and is one of the seven districts in the province. in 2019, the population of the district was 1,514,306 persons in 2020 (or tambo district municipality 2020). bedford orthopaedic hospital is the only public hospital offering prosthetic services in the or tambo district, and it serves clients from the surrounding former transkei districts. as manig (2018) noted, 128 amputations of the lower limbs were conducted in the or tambo district from 2015 to 2017. anecdotal evidence also shows that, on an annual basis, around 120 prostheses are issued at bedford orthopaedic hospital (personal communication, staff working in the medical orthotics and prosthetics department). it is, however, not clear how much of these are primarily based in the or tambo district. the participants of this study come from diverse residential areas such as the ncambele, ngxwala and mpumazi locations, reflecting the range from rural, sparsely populated areas to urbanised settings. the varied geography and socio-economic conditions of the or tambo district provided a comprehensive backdrop for understanding the experiences and challenges faced by individuals using prosthetics. this setting offers a unique perspective on the accessibility and adaptation of prosthesis usage in rural versus urban environments, highlighting the disparities in available resources, support systems and the physical environment for individuals in different parts of the district. study population and size the study population comprised adults in the or tambo district who had undergone lla and had been using a prosthesis for at least 1 year. participants were included if they met the following inclusion criteria: (1) adults (18+ years) who had been using a lower limb prosthesis for at least a year, and (2) were long-term residents of the or tambo district to ensure consistency in prosthesis components and services. individuals who had received their prosthesis services from the researcher or those who recently moved to the or tambo district or had obtained their prosthesis from the private sector were excluded to maintain study consistency. initially, we planned for 12 participants. pietkiewicz and smith (2014) posit that ipa studies have been published with sample sizes ranging from 1 participant to 15 participants. while larger samples are possible, they are less common. recruiting participants for this study was challenging, as the first author had to rely on phone calls. many people in rural areas experience poor network coverage, and some change their numbers – this made the process difficult, as many calls often went to voicemail. the first author persistently tried to reach them telephonically, and even when they answered, the conversation was frequently unclear because of poor connectivity issues. from bedford orthopaedic hospital, we obtained a list of 18 individuals with their contact details. unfortunately, two of them had passed away, and four were not interested in participating. two cell phone numbers were incorrect, and five calls consistently went to voicemail, leaving us with only five participants. these participants were diverse in terms of age, gender and occupation, but all shared the experience of coping and adapting to life with a prosthesis. these five participants met the inclusion criteria and consented during the data collection period. the final sample size, although smaller than initially anticipated, was sufficient for a detailed qualitative analysis. data saturation was also reached after five interviews, as no new themes were emerging. first contact with potential participants was made by the first author, with assistance from the head of department at bedford orthopaedic hospital. the first author also approached participants during their follow-up visits in the hospital. the study was explained in detail, including its purpose, procedures, risks and benefits. those who showed interest were given time to ask questions, and written consent was obtained prior to participation. data collection methods and analysis semi-structured interviews were the most suitable interview type for an ipa study (alase 2017). the interviews were conducted face to face at the participants’ homes, where they felt more comfortable and at ease. this approach made the interviews more convenient for participants, as they did not need to travel to other locations. interviews lasted between 45 min and 60 min at the participants’ homes and were conducted in isixhosa and english, based on participants’ preferences. the length of an ipa interview varies widely, but in this study, each interview lasted from 45 min to 60 min. as smith and osborn (2007) and pietkiewicz and smith (2014) put it, most ipa interviews last an hour or more; however, shorter or longer interviews occur based on the depth of exploration needed. each participant received an r200.00 shoprite (supermarket) voucher as a token of appreciation for their time and participation. a self-developed interview guide was the data collection tool for this study. a self-developed interview guide can be customised to align precisely with specific research goals and questions, ensuring that the questions are directly relevant to the research aim. previous literature (such as ennion & manig 2019) assisted and played a crucial role in developing the interview questions by providing a foundation of knowledge and insight into the topic of interest. sample questions included: ‘can you describe how your life has changed since using the prosthesis?’ and ‘what challenges did you face during adjustment?’ further probing and prompting were done during the interview to get participants to delve deeper into the meaning of their experiences. the questions in this interview were exploratory (designed to gather more information, clarify responses or seek further details from the interviewee) and aimed to uncover the participant’s lived experiences of using a prosthesis. analysis and data management all interviews were audio-recorded and later transcribed. after transcribing, participants were asked to verify whether the transcripts accurately reflected their accounts. the study followed the steps of the ipa approach, as outlined by crist and tanner (2003), smith and osborn (2007) and pietkiewicz and smith (2014), as follows: initial reading and note taking – the analysis began with a thorough reading and rereading of each interview transcript while detailed notes were taken. generation of initial codes – the coding process involved identifying and labelling meaningful segments of text (codes) related to the participants’ experiences and perspectives. these codes captured the essence of what the participants expressed. grouping codes into themes – codes that shared common characteristics were organised and grouped into preliminary themes. this process involved looking for patterns and connections within the data. refinement of themes – themes were revived and refined by cross-referencing them with the original transcripts and codes. writing descriptive narratives – descriptive narratives were developed for each participant based on identified themes. this narrative provided a detailed account of the participant’s experiences. cross-case analysis – themes and narratives were compared across participants to identify overarching patterns and differences in their experiences. the initial analysis, however, was conducted on a case-by-case basis. writing up the results – a comprehensive report was developed, outlining the themes, narratives and findings from the analysis. after this analysis, the first author presented findings to participants to ensure correct interpretation, as part of member checking. regular discussions between the first author and the supervisor (second author) helped refine, validate and confirm the structure and interpretative findings. the second author also gave regular feedback on the different versions of analysed data. regarding data management, data were securely stored on microsoft onedrive (only the first author had the password, which helped to protect the account from unauthorised access) and a cloud platform (for backup). this safeguarded sensitive information, ensuring that only authorised personnel could access and manage the data, thereby enhancing data security and privacy. ethical considerations ethical approval was first sought from the stellenbosch university health research ethics committee (hrec) (reference no: s23/10/254) and from the eastern cape department of health (ec_202401_019), and institutional permission was sought from nelson mandela academic hospital (ec_202402_008). written informed consent was obtained from all participants, and confidentiality was maintained throughout. results table 1 depicts the demographic details of participants who were included. table 1: demographic details of participants. following analysis, three themes describe the experiences of lower limb prosthesis users. theme 1: facing psychological and identity adjustments the initial reaction of participants following the use of a prosthesis varied and revealed the profound emotional and psychological impact of adjusting to using an assistive device. some participants actively sought ways to manage these emotions through professional counselling and family support. for example, participant 1 (p1) mentioned that counselling was crucial in helping her come to terms with her new reality, as it provided a space to discuss her fears and frustration. p3 found motivation in helping others who were going through similar experiences to turn their emotional struggles into sources of strength and personal empowerment. for others, it was a moment of joy and newfound hope. in contrast, the experience was overwhelming and filled with sadness for other participants. these participants described feeling overwhelmed by the reality of relying on an artificial limb, which presented a drastic change in their sense of self and how they navigated the world. p1 mentioned that she struggled to get used to the prosthesis because she was ‘used to my own leg’, and now she ‘had to learn to rely on something foreign to me’. these support systems (including emotional support from family, encouragement from peers and community acceptance) were essential in helping participants adapt, offering both emotional support and practical help that alleviated their daily activities: ‘it was very difficult, sister. i was shocked, to be honest. having to use an artificial leg instead of my own, it was something i never thought would happen to me.’ (p1, 27, female, rural) ‘the idea of relying on a prosthesis felt daunting, and i couldn’t shake the memories of what i had lost.’ (p3, 33, female, urban) despite the initial shock, some participants expressed feelings of relief and joy as they began to realise that the prosthesis could restore some degree of functional independence and mobility. as they gained more confidence in using the prosthesis, the emotional burden lessened, and they started to see the artificial limb as a tool that enabled them to engage in their daily lives with greater independence and ease. however, the adjustment process was not without its challenges, as many struggled with adapting to their new reality and the physical difficulties of learning to walk with a prosthesis. over time, participants reported that they began to embody the prosthesis as part of their new identity: ‘i felt like my life was beginning to return to normal and i have accepted my new reality. my excitement came from knowing that i could regain my independence and start living like before.’ (p2, 49, male, rural) ‘over time, though, i got used to it and learned to accept it as part of my life.’ (p3, 33, female, urban) participants expressed happiness at the newfound ability to walk unaided, after long periods of relying on crutches and wheelchairs. the emotional relief was deeply tied to the rediscovery of freedom and the ability to participate in activities that had previously seemed out of reach when they were using crutches and wheelchairs. for these participants, walking without assistance symbolised progress and a return to life as they once knew it. however, alongside these positive emotions, participants also experienced moments of doubt and frustration as they adjusted to the challenges of prosthesis use. physical discomfort, such as pressure sores and the difficulties of navigating uneven surfaces, often reminded them of their limitations, briefly interrupting their progress. for instance, participant 4 shared: ‘after two years of use, i developed a painful sore at the end of the stump’. despite these setbacks, the overarching emotional response remained one of optimism and determination, as participants focused on small victories and the long-term benefits of their prosthetic adaptation. this mix of joy and frustration highlights the emotional resilience required to navigate the transition from dependency to newfound independence: ‘i felt a sense of freedom again. i could walk without needing anyone’s help, and that gave me hope. it felt like i was normal again.’ (p1, 27, female, rural) ‘while i was mostly positive, there were moments of doubt, especially when i struggled to walk on uneven surface. i reminded myself of my goals and how far i’d come.’ (p2, 49, male, rural) the use of a prosthesis brought significant changes in participants’ self-image and self-esteem, as they gradually regained their confidence. this renewed self-image allowed participants to engage more confidently with others and reclaim their roles within their families and communities. the independence gained from using the prosthesis was particularly empowering, as it reinforced their self-worth and provided a boost in self-esteem. several participants initially struggled with body image issues, feeling incomplete or diminished after their amputation. over time, they began to accept their bodies and appreciate their strength and capabilities. being able to participate in activities without relying on others restored their dignity and respect, both in their own eyes and in the eyes of those around them. this transformation was gradual but profound, as participants noted a positive shift in how they viewed themselves and how others interacted with them: ‘once i got used to the prosthesis and saw that i could still move and do things, i began to see my body in a new light.’ (p1, 27, female, rural) ‘knowing that i can take care of myself has been empowering, and it restored my confidence in many ways.’ (p2, 49, male, rural) theme 2: navigating daily societal realities and perceptions the experiences of participants were also shaped by external factors such as stigma and societal attitudes which they were subjected to. for those who faced stigma, avoiding public places initially seemed like the only solution. those who encountered negative societal attitudes experienced being stared at or receiving negative comments, which had a profound impact on their self-image and introduced feelings of wanting to disengage from public life. these negative interactions often led to feelings of isolation and alienation, as some participants chose to limit their outings to avoid uncomfortable situations. with time, they learnt coping mechanisms, including focusing on their personal journey and seeking emotional support, which helped them reclaim their confidence and engage more freely in social spaces: ‘whenever i went out, people would stare at me. some would look at me with pity, while others would laugh and say i had a “doll’s leg”. it hurt a lot, and it made me feel like people didn’t see me the same way they used to. i dealt with it by staying home most of the time.’ (p1, 27, female, rural) ‘i do notice some pitying looks from strangers when i’m walking in the streets, but it doesn’t affect me much.’ (p3, 33, female, urban) there are also participants who had not encountered any stigma or discrimination related to the prosthesis. in fact, they experienced positive societal attitudes, often receiving respect and admiration for their resilience and independence. the presence of supportive communities and the strength of their self-sufficiency played a crucial role in shaping these positive experiences. these participants noted that their positions of responsibility, such as serving as the community counsellor or actively participating in daily tasks, reinforced the respect they received from others. however, they were aware of the challenges faced by others in similar situations. this level of awareness made them more appreciative of the inclusive attitudes within their own communities: ‘thankfully, i’ve never experienced any stigma or negative societal attitudes. in my community, people respect me and don’t discriminate against me because of the prosthesis.’ (p2, 49, male, rural) ‘thankfully, i haven’t faced stigma. my community has been very supportive. i think my self-sufficiency has helped others view me positively.’ (p5, 65, male, rural) the participants expressed how the prosthesis allowed them to regain control over household chores and personal activities, which in turn improved self-sufficiency and confidence. for some participants, the ability to carry out simple household tasks was a significant victory, marking a step towards reclaiming their independence. one participant described how being able to do daily chores, like cooking and cleaning, made them feel ‘whole again’ after a period of dependency on others. overall, the prosthesis gave participants the freedom to engage more fully in daily life, manage their household and take pride in their independence. although their activities sometimes required more thought and adaptations compared to before their amputation, the ability to perform tasks unaided reinforced their self-worth: ‘mowing my lawn again was incredibly fulfilling. it symbolised my regained independence and ability to manage my home.’ (p2, 49, male, rural) ‘it made me feel capable and independent, showing me that i could still contribute to my home and not be reliant on others.’ (p5, 65, male, rural) participants also shared environmental and physical limitations, which played a significant role in shaping their experiences. for many, the transition from the controlled environments of hospitals and physiotherapy centres to their home environments posed unexpected difficulties. uneven terrain, particularly in rural areas, made it harder for participants to navigate, affecting their emotional well-being and limiting their independence. in addition to environmental factors, physical complications such as pressure sores or other medical conditions hindered some participants’ ability to use the prosthesis effectively. while the prosthesis provided increased mobility, the transition to using it daily was fraught with physical and emotional challenges. environmental factors, such as uneven ground in rural areas, significantly impacted participants’ ability to move freely and confidently, often leading to frustration and regression. however, participants employed various strategies, such as using walking sticks, to cope with these challenges and regain independence: ‘the biggest challenge for me was walking with the leg at home in the rural areas. at physiotherapy in bedford, everything seemed easy because it was flat and well-prepared for people with prosthetics. but back home, the paths are rough and full of stairs.’ (p1, 27, female, rural) ‘physically, walking at home was a struggle at first. the ground in my yard is uneven and stony, which made it difficult to move around with the prosthetic leg. hospitals and physiotherapy settings are designed for easy movement, but that’s not the reality when you return home.’ (p2, 49, male, rural) theme 3: learning to cope and receive support the availability of a support system played a crucial role in how participants adjusted to life with a prosthesis. while some received help from formal services like physiotherapy, most relied heavily on family and close friends for both emotional and practical support. this encouragement provided comfort during emotionally difficult periods and helped ease the physical burden of adaptation. participants repeatedly credited their loved ones for motivating them and remaining present throughout their rehabilitation: ‘my wife was there for me every step of the way. she came to every appointment and kept me motivated when i wanted to give up.’ (p4, 45, male, rural) ‘my sister has been my rock throughout this journey. from hospital visits to just being there for emotional support, her presence has made a world of difference.’ (p5, 65, male, rural) the personal growth and positive outcomes experienced by participants after using a prosthesis were marked by a sense of newfound independence. participants expressed satisfaction at being able to regain purpose, contribute to their families and engage in meaningful activities that had previously seemed impossible. this emotional growth was deeply tied to the realisation that they could still lead fulfilling lives despite their physical limitation. for many participants, the use of a prosthesis was a turning point that enabled them to regain independence and reclaim their purpose in life. the opportunity to return to work, engage in sports or perform daily tasks without relying on others fostered personal growth and self-confidence. by overcoming the challenges of using a prosthesis, participants felt empowered and capable, often expressing pride in their achievement. participant 2 found fulfilment returning to sports, particularly javelin, where setting a record meant both physical and emotional progress: ‘setting a record felt like a true testament to my journey’. for another participant, a return to work meant a return to normal life: ‘before that, i was just sitting at home feeling useless, but getting back into the workforce showed me that i could still have a normal life.’ (p1, 27, female, rural) however, personal growth in this context does not always stem from personal achievements alone. for other participants, the process of using a prosthesis fostered a deeper connection to others, particularly through acts of support and encouragement. participants found personal growth through helping others and becoming a source of motivation. by offering support and guidance, these individuals reinforced their own resilience while positively impacting others’ lives. participants experienced positive growth by becoming sources of strength and encouragement for others, turning their personal challenges into opportunities for positive impact and emotional growth: ‘i’ve even been able to motivate other people who are going through similar experiences.’ (p3, 33, female, urban) ‘taking on small jobs gave me a purpose that i thought i had lost. it felt good to contribute financially and prove to myself that i could still support my family despite my challenges.’ (p4, 45, male, rural) the participants’ experiences highlight the complex and personal journey of adjusting to prosthesis use, where learning to cope requires patience, self-motivation and external support. participants described the physical and emotional challenges they faced during the adaptation period. the experience of adjusting to a prosthesis, as described by participants, reflects a complex journey of learning to cope both physically and emotionally. participants had to take the initiative in their adaptation process, often with minimal access to consistent rehabilitation services. many spoke of the need for self-directed learning, emphasising the lack of accessible, consistent rehabilitation services. this meant teaching themselves basic skills like walking and balancing, while others benefitted from more formal support systems: ‘i adjusted to the prosthesis by practicing walking around the village. i wanted to become accustomed to it quickly, so i made sure to walk as much as possible.’ (p5, 65, male, rural) ‘i set small goals for myself, like walking a certain distance each day. celebrating those little achievements helped keep me motivated.’ (p4, 45, male, rural) these stories of gradual progress emphasise the importance of emotional and motivational support from others. for some, the support of physiotherapists, teachers or friends made a significant impact on their adjustment. emotional support from friends, family and the broader community also emerged as critical for coping and adaptation. the role of social support extended beyond formal rehabilitation. for p3, returning to high school with a prosthesis was made easier by the community’s acceptance and encouragement: ‘my teachers were very encouraging. they would check in on me and celebrate small achievements, which made me feel valued.’ (p3, 33, female, urban) ‘a dedicated physiotherapist from ikhwezi lokusa special school was my main support during the adjustment. she was incredibly patient and helped me a lot.’ (p2, 49, male, rural) the future aspirations of prosthetic users in this study reflect a wide range of hopes, shaped by their individual experiences with prosthetics and personal circumstances. some participants were driven by the desire to reclaim physical abilities and pursue athletic achievements. p1, for example, had a dream of running again, motivated by their pre-amputation jogging routine. this activity, which once brought them stress relief, now served as a symbol of progress and determination. their focus was on strengthening their balance and endurance, with the long-term goal of acquiring a specialised prosthesis designed for running. similarly, p2, an aspiring athlete, had set their sights on representing south africa (sa) in international sports competitions. their ambition was clear in their proactive efforts to secure sponsorships and specialised training, highlighting how the prosthesis is not only a tool for mobility but a vehicle for reaching new levels of physical achievement: ‘one of my big dreams is to start running again. before my amputation, i used to jog to relieve stress, and i’d love to do that again. i’d be so happy to get a prosthesis that would allow me to run like oscar pistorius.’ (p1, 27, female, rural) ‘i’m hoping to get a prosthesis that is specifically designed for sports, so i can perform at my best. i often see other athletes with prosthetics built for both walking and sports, and that’s what i aspire to have.’ (p2, 49, male, rural) for other participants, future aspirations were more closely tied to career opportunities and personal independence. p3 viewed the prosthesis as an enabler for engaging in meaningful work, particularly in healthcare or education, where they hope to use their experiences to inspire and support others. this reflects a broader sense of purpose, where prosthetics are seen as a tool for contributing to the community. participant 4, on the other hand, aspired to return to their previous job, a source of stability and pride: ‘i see my prosthesis opening up job opportunities for me in the future.’ (p3, 33, female, urban) ‘i hope to return to my previous job with the help of the prosthesis.’ (p4, 45, male, rural) discussion the discussion is structured according to the three themes of this study, which showcase the experiences of lower limb prosthetic users in coping and adjusting to prosthesis use in the or tambo district. facing psychological and identity adjustments the participants revealed a multifaceted journey of facing emotional and physical challenges (including mobility limitations), which hinder psychological and social adjustments to limb loss. their initial challenges included psychological responses or reactions following receiving a prosthesis. these responses to prosthesis use were marked by shock, sadness and an overwhelming feeling of loss, as many participants struggled to accept their new reality. given that the participants worried about their mobility and functionality, these responses were also linked to what they perceived as having to be reliant and dependent on others for their basic needs following the limb loss or assistance from others to perform everyday activities – a factor that brings about feelings of disempowerment. this finding is consistent with prior research on the psychological impact of amputation (dadkhah et al. 2013; pedra et al. 2018). like these findings, this impact reveals that the emotional challenges of losing a limb can include feelings of grief, loss and a disruption of self-identity (murray & forshaw 2013). such findings foreground the need for consistent psychological support as an integral part of the prosthetic rehabilitation process and practice, especially in the initial stages of prosthetic rehabilitation. providing access to counselling or peer-support services could greatly aid in helping users process these emotions of loss. ostler et al. (2014) have argued that integrating psychological services into the standard care process would ensure that users have a safe space to address these feelings and develop a positive mindset, a factor shown to enhance adaptation outcomes. following a space where the users initially did not regard this assistive technology as a sufficient resource for improving their functional capacities, they also acknowledged and celebrated achievements within this journey. they referred to achievements as personal milestones and progress experienced by prosthesis users as they adjusted to life with a prosthesis. worth noting, we see that these achievements are not simply outcomes but represent significant steps in coping and adapting, such as regaining mobility and achieving functional independence. in this case, the prosthesis serves as an enabler for empowerment in this post-amputation rehabilitation, with mobility being integral to regaining independence. these are key factors that are thought to enhance well-being in conceptual models of rehabilitation, such as the international classification of functioning, disability and health (world health organization [who] 2001). assistive technologies help people maintain or improve functionality (pousada-garcia et al. 2021), but the participants’ experiences show that the benefit extends beyond functional capabilities. this signifies a profound meaning of what prosthetics enable. the participants in this study reported that while they initially felt incomplete or diminished because of losing a limb, with time, they embodied the prosthesis into their new identity and regained confidence and independence. additionally, participants expressed how the prosthesis improved their self-esteem and body image, findings that are mirrored in work by kizilkurt et al. (2020). kizilkurt et al.’s study found that improved mobility and independence through prosthesis use contributed to positive self-perception and body image recovery, particularly in the long term. these findings uncover novel contributions around prosthesis embodiment. while previous studies such as murray and forshaw (2013) have explored identity reconstruction following limb loss, this study offers a rural south africa perspective, where cultural beliefs, social stigma and environmental barriers strongly influence how prosthetic users embody their devices and adjust to new identities. the participants also expressed how they found a sense of relief and joy as they began to regain a sense of independence and mobility. it is this regained functional independence that facilitated emotional adjustment. thus, it can be argued that, for these participants, physical functioning and independence were important benefits afforded by a prosthesis and influenced how they perceived their self-image (sinha et al. 2014). navigating daily societal realities and perceptions a common finding relates to the alienation that some participants faced as a result of encountered stigma. social interactions significantly influenced participants’ experiences of adjusting to prosthesis use, with some facing stigma. the stigma originated in negative societal attitudes, such as being stared at or ridiculed, and often led to social withdrawal for several participants. as mireille and foje (2019) posited, social stigma surrounding visible prosthetics can create feelings of isolation and exacerbate the emotional burden of prosthesis users. to address societal stigma, community education programmes on assistive technologies are crucial. this may include educating the public on amputation and prosthesis use to reduce discrimination and foster a more inclusive environment for prosthetic users. community awareness campaigns could also be beneficial in reframing prosthetic use as a step towards independence and resilience, not a source of stigma. conversely, other participants in this study reported positive interactions, where community members admired their resilience and supported their efforts to reintegrate. this confirms findings by resnik, borgia and silver (2017), which emphasise that community support and positive social interactions are crucial for prosthetic users’ psychological well-being and social reintegration. such findings also foreground the importance of educating communities. positive community engagement not only mitigates the impact of stigma but also fosters confidence and a sense of belonging, as seen in several participants’ experiences. falgares et al. (2019) emphasised that family support helps users build self-confidence and maintain motivation during the rehabilitation process. this observation further highlights the critical role of family involvement in the rehabilitation process (lee et al. 2023). the emotional encouragement and practical help provided by family members can significantly reduce the stress and fears associated with adjusting to a prosthesis and enhance overall quality of life, especially in the absence of the often-needed psychological support. beyond personal challenges, the participants also encountered environmental challenges related to navigating uneven rural terrain, which evoked feelings of frustration and setbacks in their prosthetic rehabilitation. these experiences confirm razak et al.’s (2016) findings, which showed how environmental factors, such as poor infrastructure and rugged landscapes, can hinder prosthetic users’ mobility, particularly in rural areas. while it may be the case that the commonly accessible designs within public healthcare facilities are those that are not appropriate for rural settings, it is also the case that the rehabilitation process often does not take place in such simulated infrastructure but in well-built rehabilitation facilities, and this may not fully prepare users for what they will confront at home. there is therefore a need for prosthetic designs to effectively accommodate environmental challenges specific to rural settings, where infrastructure may not be conducive to mobility when using a prosthesis. developing prosthetics specifically designed for rural environments (such as those with better stability and durability) could help alleviate some of these difficulties. learning to cope and receive support using a prosthetic requires physical strength and resilience, as users must continuously adapt to the device. physical discomfort, such as pressure sores and other complications, further impeded the participants’ adjustment process. according to dakhil et al. (2019), physical issues such as prosthesis-related skin problems are common, particularly when prosthetic users have limited access to follow-up care. the participants in this study faced similar challenges, as access to consistent healthcare services in the rural or tambo district is limited, forcing many to self-manage their complications. this reflects broader healthcare system access issues in low-resourced settings, as harkins et al. (2013) highlight. the importance of ongoing medical support for prosthetic users is integral to preventing and managing secondary complications. perhaps implementing a mobile clinic or community-based follow-up programmes could help bridge this gap in rural areas (harris et al. 2021). implementing these would also help with ensuring that users receive timely adjustments and advice related to the issues they are faced with. regular follow-ups would also allow prosthetists to monitor and address these issues proactively, ultimately improving comfort and reducing the risks. despite these physical and environmental challenges, a key finding is that participants developed strategies to cope, such as using walking aids or adjusting their routines. this is consistent with findings from falgares et al. (2019), who noted that adaptive coping strategies are essential for long-term success in prosthetic rehabilitation. participants who had better access to rehabilitation services reported better physical and emotional outcomes, reflecting the importance of professional support in prosthetic adjustment. the critical role of professional rehabilitation services is affirmed by dadkhah et al. (2013) for enhancing both mobility and emotional adjustment in prosthetic users. however, for many participants, formal support services are limited, requiring them to rely heavily on self-directed learning and dependency on family for assistance. prosthetic users in rural and underserved areas particularly often lack consistent access to rehabilitation services, increasing their reliance on self-management and informal support networks (harkins et al. 2013). it is here that peer-support programmes in the community may be helpful in closing the gap. in the united states, individuals with lower limb loss reported positive experiences about their prosthetic legs and viewed peer support as a helpful source for both information and emotional support, potentially benefitting functional and psychological recovery after amputation (lee et al. 2024). similar benefits of peer support have been found in sa in mental health services (de wet, sunkel & pretorius 2022). likewise, family support emerged as a key factor in participants’ ability to cope, with participants frequently citing emotional and practical help from family members as crucial in their adjustment. this finding is consistent with stuckey et al. (2020), who found that family involvement is associated with better emotional well-being and functional outcomes in prosthetic users. while there is still a long way towards achieving successful inclusion of formal peer support within healthcare services in the south african context, practitioners should continue advocating for these services as part of community-based rehabilitation services. conclusion this study highlights the complex and deeply personal journeys of lower limb prosthetic users in the or tambo district, emphasising the multifaceted challenges and achievements they experience in adjusting to prosthesis use. the experiences of lower limb prosthetic users in this study reflect the complex interplay of emotional, social, physical and environmental factors in the adjustment process. emotional resilience, positive societal attitudes and strong support systems are critical to successful adaptation. however, the challenges of limited healthcare access, stigma and environmental barriers highlight the need for more targeted interventions, particularly in rural areas. these findings emphasise the importance of developing medical orthotists and prosthetists (mops) services that extend beyond device provision to include continuous support and follow-ups. future efforts should focus on improving access to rehabilitation services, reducing stigma through community education and designing prosthetic solutions that better address the unique needs of users in rural contexts. acknowledgements this article is based on research originally conducted as part of noluvuyo seti’s master’s thesis titled ‘experiences of coping and adjusting to lower limb prosthesis use in the or tambo district, eastern cape: a qualitative exploration’, submitted to the faculty of medicine and health sciences, stellenbosch university, in 2025. the thesis is currently unpublished and not publicly available. the thesis was supervised by lieketseng y. ned. the manuscript has been revised and adapted for journal publication. the author confirms that the content has not been previously published or disseminated and complies with ethical standards for original publication. competing interests the authors declare that they have no financial or personal relationship that may have inappropriately influenced them in writing this article. authors’ contributions n.s. conducted this research as part of her master’s degree, and l.y.n. was her research supervisor. n.s. contributed to the conceptualisation, formal analysis and methodology and drafted the first draft of the article. l.y.n. significantly edited the article. both authors finalised the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are not openly available because of reasons of sensitivity and are available from the corresponding author, 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prosthetics and orthotics international 44(5), 279–289. https://doi.org/10.1177/0309364620934322 world health organization (who). 2001, international classification of functioning, disability and health, viewed 25 november 2024, from https://iris.who.int/bitstream/handle/10665/42407/9241545429.pdf?sequence=1. http://www.ajod.org open access page 1 of 1 reviewer acknowledgement acknowledgement to reviewers in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on https://ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website and register as a reviewer. to access your details on the website, you will need to follow these steps: 1. log into the online journal at https://ajod.org 2. in your ‘user home’ [https://ajod.org/index. php/ajod/user] select ‘edit my profile’ under the heading ‘my account’ and insert all relevant details, bio statement and reviewing interest(s). 3. it is good practice as a reviewer to update your personal details regularly to ensure contact with you throughout your professional term as reviewer to african journal of disability. please do not hesitate to contact us if you require assistance in performing this task. publisher: publishing@aosis.co.za tel: +27 21 975 2602 tel: 086 1000 381 the editorial team of the african journal of disability recognises the value and importance of the peer reviewer in the overall publication process – not only in shaping the individual manuscript, but also in shaping the credibility and reputation of our journal. we are committed to the timely publication of all original, innovative contributions submitted for publication. as such, the identification and selection of reviewers who have expertise and interest in the topics appropriate to each manuscript are essential elements in ensuring a timely, productive peer review process. we would like to take this opportunity to thank all reviewers who participated in shaping this volume of the african journal of disability. we appreciate the time taken to perform your review(s) successfully. akwasi kumi-kyereme albert m. warnick anthony k. danso anthony k. edusei chioma ohajunwa chris de beer-procter dana donohue diane bell eleanor ross elsje scheffler gloria marsay gubela mji heather m. aldersey heidi lourens helen l. laas ilze slabbert ishbel mcwha-hermann james chakwizira janine verstraete joseph k. gona judith a. mckenzie karen bunning kate a. sherry lieketseng ned lindy mcallister madri engelbrecht marcia lyner-cleophas margaret m. wazakili maria berghs maria kett mariette swanepoel mary wickenden maximus m. sefotho meenakshi srivastava michelle botha michelle king munyane mophosho nectarios papavarnavas nora groce reinette roziers romy parker ronelle carolissen rosemary luger sally swartz sharon kleintjes shona mcdonald stephanie n. penkler suna verhoef tawanda chivese terry j. ellapen tom shakespeare zukiswa nzo http://www.ajod.org� https://ajod.org� https://ajod.org� https://ajod.org/index.php/ajod/user https://ajod.org/index.php/ajod/user mailto:publishing@aosis.co.za abstract introduction methods review findings conclusion acknowledgements references about the author(s) lieketseng v. sekoto division of communication sciences and disorders, department of rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa vera-genevey hlayisi division of communication sciences and disorders, department of rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation sekoto, l.v. & hlayisi, v.-g., 2023, ‘identity construction among deaf adolescents and young adults: a literature review’, african journal of disability 12(0), a1168. https://doi.org/10.4102/ajod.v12i0.1168 review article identity construction among deaf adolescents and young adults: a literature review lieketseng v. sekoto, vera-genevey hlayisi received: 26 oct. 2022; accepted: 16 mar. 2023; published: 02 may 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: identity construction is an integral developmental task for adolescents and young adults (aya). the intersection of deaf identity and disabling hearing loss (dhl) adds a layer to the complex process of identity construction. aim: this literature review highlights the self-ascribed deaf identities of aya and seeks to understand how aya with dhl forge these identities. knowledge areas for prospective research and practice are uncovered. method: a traditional literature review of qualitative empirical evidence on aya’s accounts of their deaf identity construction was conducted on seminal literature and peer-reviewed journals in psychology, disability studies and deaf studies. results: the emerging self-ascribed deaf identities of aya are diverse. the identities include deaf, hearing, hard-of-hearing (hoh), bicultural hoh, identities that detach from disability, bicultural deaf, unresolved and fluid identities. complex trade-offs exist where the construction of certain identities forgoes certain reasonable accommodations, interventions or relations that are critical for personal development and wellbeing. conclusion: current literature orients deaf identity formation around hearing status and deaf-hearing communal dynamics. in-depth research comprising facets of aya’s personal, enacted and relational identities is required to conscientise rehabilitation professionals about the nuances of deaf identity issues and how to develop interventions that are supportive and responsive to the clinical and psychosocial challenges of aya with dhl. contribution: this paper deviates from the d/deaf identity dichotomy, revealing a spectrum of deaf identities that aya forge. the rationales of aya’s deaf identities, underlying processes and possible vulnerable identities are unpacked. recommendations for prospective research pertaining to identity construction among deaf aya are made. keywords: adolescents; deaf identity; identity construction; young adults; hearing loss; disability; self-ascribed deaf disability. introduction the conjunction of identity and disabling hearing loss the world health organization (who 2021:40) categorises disabling hearing loss (dhl) as hearing loss (hl) of moderate severity or more (>35 db) in the better hearing ear. the presence of dhl can be a drive for the personal adjustment that implicitly affects one’s evaluation of their identity. thus, a pivotal psychosocial task that is implicated in the context of dhl is identity construction. identity is a complex concept denoting one’s understanding of who they are. social scientists describe identity as self-concepts resulting from the interaction of self and society (israelite, ower & goldstein 2002:134). the periods of adolescence and young adulthood for individuals in the 10–25 years age range are peak developmental stages for identity construction. these periods are also characterised by rapid physical, psychological, emotional and social changes, to which adolescents and young adults (aya) must adapt (ozdemir, utkualp & palloş 2016:717). in hearing healthcare, aya are becoming the focal point for audiological interventions as the prevalence and risk of acquiring dhl in this population are on the rise. globally, hl is the third leading condition that accounts for years lived with disability (global burden of disease 2019 hearing loss collaborators 2021:1002). across the world, 34 million children aged 0–14 years require rehabilitation services for dhl, with most congenital and acquired paediatric dhl cases being attributed to sub-saharan africa (adedeji et al. 2015:1625; desalew et al. 2020:2). for the young people affected by dhl, societal and attitudinal barriers can be a hindrance to function across social, psychological, educational and vocational spheres, affecting participation and overall wellbeing (who 2021:1). evidently, dhl affects psychosocial wellbeing, implicating identity construction among other processes. the purpose of audiological rehabilitation is to improve communication function and psychosocial wellbeing. as modern-day audiological rehabilitation shifts from traditional medical models to more person-centred approaches, psychosocial aspects such as understanding who the person receiving care is in the context of dhl are critical. although underexplored, research shows that identity issues relating to dhl can disrupt the provision and uptake of audiological interventions (clark et al. 2020:55). therefore, insight on deaf identity construction is valuable for achieving holistic care that is responsive to the unique needs of aya. understanding the construction of identity throughout adolescence and young adulthood, individuals actively consolidate ideations about themselves and their surroundings (kemmery & compton 2014:159). the resultant product is identity, a unique and distinct concept of who they are to themselves and others (upreti 2017:54). identity construction results from a selective acceptance and rejection of childhood identities, community identities and self-identities (erikson 1968:159). many theories about identity formation have been formulated. erik erikson’s theory of psychosocial development (1968), james marcia’s ego identity status model (1966) and hetch’s communication theory of identity (1993) are outlined in this article. these theories and model frame identity construction as a critical aspect of psychosocial development for aya and communication as a key requisite for identity formation, thus appealing to core aspects of audiological rehabilitation. together, these identity formation theories capture the essence of audiological rehabilitation, which lies in improving psychosocial and communication function for persons with dhl. thus, they lay a foundational framework through which to understand deaf identity construction among aya with dhl. through their background as developmental psychologists, erikson and marcia’s theories speak to psychosocial aspects and highlight exploration as a key process in identity construction. marcia’s theory further edifies erikson’s theory by providing a means to classify one’s identity status and any associated challenges. as communication scientists, hetch and colleagues’ communication theory of identity depicts the layered nature of identity and frames anew the understanding of communication function by emphasising communication as a means to identity construction. erik erikson’s theory of psychosocial development erikson (1968) theorised several conflicting psychosocial states that introduce a crisis along one’s lifespan from infancy to old adulthood. the crisis of identity versus role confusion is most predominant in adolescence and young adulthood, creating a push factor for initiating identity construction (erikson 1968:131; upreti 2017:54). often, identity formation has long-term implications on the social circles, health behaviours, career and vocational aspirations that aya have (sawyer et al. 2012:1631). adolescents and young adults who do not resolve their identity crisis tend to plunge into instability, negative behaviours and an inability to assume and sustain adulthood roles and responsibilities (erikson 1968). to achieve an identity, aya need the freedom to explore different roles and identities. further research investigated this notion of exploration and commitment in identity development. james marcia’s ego identity status model as an expansion on erikson’s theory, marcia deduced four identity statuses, namely identity achievement, moratorium, foreclose and identity diffusion (marcia 1966:557). each identity status contrasts the relationship between exploration and commitment. individuals attain identity achievement after extensive exploration, while those who remain in moratorium are still experimenting with roles and have not made firm commitments (kroger et al. 2010:683). in foreclosure, individuals settle with an identity prior any kind of exploration, and lastly, those in identity diffusion are not actively exploring and do not have any commitments (kroger et al. 2010:683). of these statuses, moratorium is the least stable; aya who get stuck in moratorium will present with negative behavioural patterns, psychopathology and have less intent with their social roles and vocational choices (kroger et al. 2010:684). in diffusion, aya isolate themselves and refrain from forming relationships (sugimura & mizokami 2012:126). it is evident that the process of identity formation can be turbulent, and that exploration is a fundamental requisite for identity construction. communication theory of identity it can be argued that the ability to communicate facilitates exploration. in fact, one theory posits that through communication identity is constructed, and the communication itself is identity (jung & hecht 2004:266). communication theory of identity is rooted in intercultural communication research and explores the relationship between identity and communication (jung & hecht). researchers proposed four frames or layers of identity, namely personal, relational, enacted, and communal identity (jung & hecht). personal identity is constructed at an individual level as an outcome of one’s self-perception (pang & hutchinson 2018:21). relational identity is drawn from a kinship with others and can be segmented into four levels. firstly, one can construct an identity from how others view them (jung & hecht 2004:266). secondly, relationships with others such as being a parent or sister, can be adopted as identities. thirdly, relational identities can be an amalgamation of multiple interacting identities, where one is a student, prefect, athlete, daughter and youth leader at the same time (jung & hecht 2004:266–267). lastly, a relation itself may constitute as an identity, as is the case where people identify as friends or a couple (jung & hecht 2004:266–267; pang & hutchinson 2018:22). enacted identities are constructed through social behaviours and activities expressing identity, as seen in the manner which one conducts themselves (jung & hecht 2004:266). communal identities emerge from affiliations with a collective or group with which one has shared values, such as racial groups, religious groups or special needs groups (pang & hutchinson 2018:23). in essence, through daily exchanges of information, identities are communicated with other people, and the communication shapes identities. while the abovementioned theories are insightful, they do not speak explicitly to deaf identity. exploration of deaf identity formation literature is required to get in-depth understanding. this literature review lies at the intersection of three concepts, identity construction, disability and hl among aya. little is known about how these concepts converge during adolescence and young adulthood. it seeks to highlight and understand the self-ascribed deaf identities that aya with dhl construct. notably, understanding identity construction is a good starting point for contextualising audiological rehabilitation interventions to the periods of adolescence and young adulthood to support identity construction as a critical psychosocial task. therefore, this review will outline existing knowledge around deaf identity construction among aya with dhl. existing knowledge gaps, the implications for audiological practice and opportunities for further research will be highlighted. methods this literature review explored existing literature on deaf identity construction in the context of dhl among aya. database searches on pubmed, psycinfo, google scholar and hand searches on seminal literature and key peer-reviewed journals in psychology, deaf studies and disability studies were perused to review qualitative research articles. searches considered literature from 2002 to 2022 and key search terms included ‘identity construction’, ‘deaf identity’ and ‘deaf ‘adolescents’. as this was a traditional literature review that was exploratory in nature, searches were not confined to prescribed protocols. the studies selected for review were not contextualised to any geographical setting to broaden the scope of the review and were qualitative in nature consisting mainly of ethnographic and phenomenological studies as these explored elaborate accounts from aya themselves, of their self-ascribed deaf identities. review findings the dichotomous perception of deaf identity in the context of disabling hearing loss traditionally, persons with hl are thought to assume one of two identities, deaf or deaf (mcilroy & storbeck 2011:495). the former identity is constructed on the principles of deaf culture, while the latter subscribes to a culturally hearing identity. as a result, those who assume deaf identities do not view their hl as a medical issue or disability, use sign language as a first language, uphold values of deaf culture and assert themselves as a unique and distinct community in society (israelite et al. 2002:135; mcilroy & storbeck 2011). on the contrary, deaf persons perceive their hl a medical condition, often use assistive hearing technology, primarily use spoken language and affiliate more with hearing people and culture (mcilroy & storbeck 2011). although rigid, this approach to identity construction is prevalent and primarily stems from looking at hl through the lens of medical and social models of disability (goering 2015:134–135; kunnen 2014:497). some researchers have attempted to broaden the scope of identity construction for persons with hl. glickman and holcomb’s stages of deaf identity development researchers in psychology that sought to illustrate diversity came up with a model consisting of four developmental stages for deaf identities on the basis of people’s relation with deaf culture (glickman & carey 1993). these are culturally hearing, which foster identity based on the cultures and beliefs of the hearing community and culturally marginal identities, which exhibit confusion regarding their standpoint when it comes to the hearing and deaf cultures (glickman & carey 1993). immersion identities advocate for and have strong and uncompromising feelings about deaf identity, and lastly, bicultural identities hold a balanced perception while still showing their deaf pride (glickman & carey 1993). in addition to these, holcomb (1997:90–91) who is also deaf introduced culturally isolated and culturally separate identity categories in his model. in the former category, individuals dismiss all interaction with hearing persons, while in the latter, individuals just minimise interaction with the hearing community (holcomb 1997:90–91). more recently, a bicultural deaf identity was coined by a bicultural deaf researcher in disability studies for embracing identity formation in both hearing and deaf spaces (mcilroy 2010). a participant with a bicultural deaf identity stated that although she was deaf and felt part of the hearing culture, she had gradually opened up to a deaf identity and was willing to forge an identity within both cultures (mcilroy & storbeck 2011:504). in essence, the bicultural deaf identity allows a freedom and fluidity where a strong affiliation and identification in deaf culture can co-exist with an appreciation of identity formation in the hearing communities that one occupies. variable deaf identities are constructed by aya with dhl. the deaf identities that adolescents and young adults with disabling hearing loss construct the experience of identity construction among aya with dhl is a unique one. research has shown that in comparison to their hearing peers, aya with dhl typically embark on their deaf identity development journey earlier (kunnen 2014:505). the formation of identity in the context of dhl is a challenging and complex process (english 2012; kemmery & compton 2014). indeed, for aya with dhl identity is layered and complex, depicting an intersection of various personal and societal factors with hearing status (israelite et al. 2002:134). consequently, the deaf identities that aya with dhl construct are distinct and diverse. the construction of deaf identities the construction of deaf identities seems to be characterised by an early onset and sense of pride in deaf culture. in a 5-year longitudinal study of the identity development of seven deaf adolescents in a netherlands school for the deaf, researchers found that as early as 14 years, the students had the strongest commitment in the identity domain of being deaf compared to the other identity domains such as life philosophy, friends, parents, studies and self (kunnen 2014:505). this may have been largely influenced by the reinforcement of their cultural identity by virtue of being in a school for the deaf. in an ethnographic study with south african young adults and adults, a participant who constructed a deaf identity expressed pride in her cultural identity and described herself as a fully capable person (mcilroy & storbeck 2011:504). in the same study, one participant expressed that previously, he had only perceived himself as a black xhosa man; however, now understood being deaf as who he is (mcilroy & storbeck 2011:505). it was as though he now saw himself as a full embodiment of his deaf identity. it can be deduced that the construction of deaf identities is the direct result of a strong affiliation and immersion in deaf culture. the construction of hard-of-hearing identities varying experiences have been found among aya who identify as hoh. in a phenomenological study, a participant stated that he identified as hoh and perceived himself as having a dual identity, hearing and deaf (kemmery & compton 2014:161). the understanding was underpinned by his ability to use both oral and signed language and experience both worlds. similarly, in a different study with 9–16-year-old swedish hoh adolescents, two of them constructed a bicultural hoh identity (brunnberg 2010:8). one student explained that he regarded himself as a middleman because of his ability to cross over between hearing and deaf worlds and even preferred to socialise with hearing and deaf friends (brunnberg 2010:11). moreover, a young adult in an ethnographic south african study identified as hoh, stating that he felt he was part of both hearing and deaf worlds; however, did not completely belong to either (mcilroy & storbeck 2011). canadian hoh adolescents solidified being hoh as a stand-alone identity that was open to interacting with the dominant hearing culture (israelite et al. 2002:140). it seemed that the hoh identity was not only constructed from the ability to be bilingual or bicultural but, was considered as an independent identity that mediates and stands at the margins of hearing and deaf cultures, creating a defined and unique identity. the construction of hearing identities research has shown that some aya will construct a hearing identity despite their hl. one adolescent in jerusalem with a cochlear implant felt she could hear well and integrated into the hearing community (rich et al. 2013). in a swedish study exploring the identity of hoh adolescents, one student expressed that she related best with other hearing children, thus consciously chose not to have deaf friends (brunnberg 2010:8). a qualitative study that enrolled seven south african young adults with hl at a university found that they all self-identified as hearing because of an upbringing in a predominately hearing culture (bell, carl & swart 2016:6). one student expressed that she had always been treated as a ‘normal’ person because her hl could not be immediately seen (bell et al. 2016:6). another student also expressed that they were not treated as a deaf person and went to school normally, while the other explained that he was never made to feel different in any way (bell et al. 2016:7). it is apparent that a hearing identity among aya with dhl is propelled by a feeling of ‘normality’ despite their dhl. this sense is brought on by being embraced and accepted as they are within the hearing community, a sense of belonging. furthermore, the nature of hl as an ‘invisible’ disability allows aya to integrate seamlessly within the hearing community as there is no apparent difference to distinguish them from hearing community members. nonetheless, this integration is considerably difficult for some aya. the unresolved identities on the other side, some aya show an identity crisis. adolescents and young adults who experience an identity crisis are often isolated and expressed denial and grief regarding their hl (brunnberg 2010:9). in his introspection, one hoh adolescent constantly expressed how it would be like to be a hearing person, while one indicated that he did not want to be deaf but wanted to become hearing (brunnberg 2010). another adolescent not only dismissed an hoh identity but also isolated themselves from any interaction with deaf, hoh or hearing friends, describing their situation as ‘just being a lot of trouble’ (brunnberg 2010). evidently, failure of aya to reconcile the reality of their lived experiences with their wishes, coupled with little or no exploration and commitment to any identity domain can trigger an identity crisis. negative societal attitudes, which propel stigmatisation and imposed limitations are also possible underlying reasons for this unresolved deaf identity (suheir 2014:229). therefore, strong feelings about wanting to be hearing may be a result of internalised stigma or reflect a faction of aya with dhl that struggle to progress past the denial stage of grief. identities that detach from hearing loss as a disability furthermore, some aya construct identities that disregard hl-related disability as a central factor in their identity construction. one study exploring the identity issues of 52 hoh adolescents in new zealand found that most of them did not perceive themselves as having any hearing disability despite being medically and audiologically diagnosed with some level of dhl (kent 2003:231). in relation to her hl, one participant explained that although she had a hearing problem, she did not perceive herself as disabled and would not adopt that identity (kent 2003:231). in the same manner, seven young adults at a south african university who identified as hearing, completely discarded hl as a defining factor in their identity formation (bell et al. 2016:6). the downside, however, was that non-disclosure of hearing status and failure to seek help for required accommodations posed a risk for their academic success (bell et al. 2016:8). this is exemplary of how self-constructed identities can vary greatly with externally ascribed identities and all their connotations. for instance, the diagnosis of dhl is a form of labelling that attaches the externally ascribed identity of disability, one that carries stigma, with society often perceiving disability as a liability (murugami 2009). given this negative societal perception, one may choose to separate their deaf identity from disability. at a personal level, perhaps disability comes secondary for these individuals and is simply not considered as a defining factor in their identity construction. the construction of fluid identities the fluidity of deaf identity is also expressed in the experiences of aya with dhl. in a phenomenological study, hoh adolescents in the united states expressed that their identity varied depending on context (kemmery & compton 2014:170). in fact, one participant explained that his identity can exist on the extremes of hearing person and person with hl, where the latter identity is applicable only when their hearing aid is malfunctioning or when they attend audiological interventions (kemmery & compton 2014:170). this is an interesting perspective that illustrates how personalised and dynamic deaf identity construction is. it further shows how the concept of deaf identity is neither this nor that, but a spectrum with extremities and in-betweens. the literature shows the variability and diversity of deaf identity. could some identities be more vulnerable than others? complex trade-offs seem to exist for some identities that aya with dhl construct. as seen in the current literature, despite having a dhl, constructing hearing identities and identities that detach from disability may cause aya to forgo reasonable accommodations because of non-disclosure or non-uptake of interventions to aid them, putting them in a vulnerable position (bell et al. 2016:8). perhaps these compromises are necessary for meeting the norms and acting within the bounds of their chosen identities helping them maintain their sense of belonging. nonetheless, when aya are adamant about these chosen identities, these existing trade-offs can potentially do more harm than good for personal, academic and vocational success. similarly, aya with unresolved identities seem vulnerable. they can be thought to be experiencing some level of identity crisis denoted by denial, low self-esteem and isolation, making them especially prone to psychopathology (warner-czyz et al. 2015:1). as such, aya showing signs of identity crisis may require extensive personal adjustment counselling compared to others. a synthesis of the literature on identity construction reveals that identity formation is not dichotomous or homogenous. identity formation is intricate. contrary to traditional deaf identity beliefs, aya construct a spectrum of identities, which are driven by varying rationales. even so, the depiction of deaf identity mainly fixates on hearing status or the cultural dynamics of hearing and deaf communities, reinforcing a rigid view of deaf identity. notably, exploring identity construction within the bounds of hearing status or deaf and hearing cultural dynamics is restrictive and does not address the wider scope of identity and the psychosocial needs of aya with dhl. evidently, deaf identity is constructed through self-perception, engaging with disability, building relationships, adopting social roles and assimilating into communities (bell et al. 2016; hecht et al. 2005; kent 2003; kunnen 2014; mcilroy & storbeck 2011; pang & hutchinson 2018). perhaps some of the aforementioned psychosocial processes may be prioritised more than others. although these underlying processes through which identity is constructed can be inferred from the studies, it is at a superficial level. an in-depth account of how and why aya construct these varying identities is lacking, even more so in the african context. conclusion contemporary discourse on deaf identity is changing, emphasising a need for portraying deaf identity in a manner that is broader and all-encompassing (morgan & kaneko 2017:234). in a study that explored belonging through south african sign language (sasl) poetry, it was stated that other than being deaf, the identity of persons with dhl is also denoted by race, gender, sexuality, ethnicity and social class, and sometimes these identities supersede the identity of being deaf (morgan & kaneko 2017:333). however, many empirical studies exploring deaf identity construction among aya with dhl are not entirely reflective of this. elaborate exploration of the psychosocial factors underlying the identities that aya with dhl construct is lacking. the current studies do not explicitly highlight how aya forge their identities, what processes underpin their self-ascribed identity choices, the trade-offs related to identity choices as well as possible challenges. when these nuances are not explored more extensively, it may undermine the vastness of identity formation and the critical processes underlying it. the topic of identity construction is still widely under-researched from a healthcare stance and more specifically in relation to audiological practice. identity issues are said to affect audiological outcomes and health behaviours and should be paid attention to in the care of aya (clark et al. 2020:55; english 2012:4). communication function also has a direct impact on identity construction. it is imperative for rehabilitation professionals such as audiologists to be cognisant of the nuances of identity formation in the context of dhl, to provide holistic care that adequately supports the task of identity construction. therefore, in-depth qualitative research exploring identity construction among deaf aya is necessary. the processes underlying deaf identity formation that encompass personal, enacted and relational identities need to be highlighted. this will make for a conceptualisation of deaf identity that is inclusive and conscious of other significant identity domains of the person. certainly, knowing aya’s self-ascribed identities alone is insufficient. it is also necessary to understand the inherent compromises and challenges that these identities pose and how best to mitigate them through adequate support. further research pertaining to identity construction is pertinent in the fields exploring disability and rehabilitation where there is a constant striving to provide person-centred and holistic care that acknowledges and supports individuals in the diverse functions that they assume. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.v.s. 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with hearing loss’, trends in hearing 19, 1–12. https://doi.org/10.1177/2331216515572615 world health organization, 2021, world report on hearing, geneva, viewed n.d., from https://www.who.int/publications/i/item/9789240020481. abstract introduction theoretical framework methodology results healthcare systems legislation and insurance systems personal system workplace systems discussion conclusion acknowledgements references about the author(s) gofaone l. modise department of occupational therapy, faculty of health sciences, university of pretoria, pretoria, south africa case management, motor vehicle accident fund botswana, gaborone, botswana claims department, botswana medical aid fund, gaborone, botswana catharina j.e. uys department of occupational therapy, faculty of health sciences, university of pretoria, pretoria, south africa eileen du plooy efundanathi, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation modise, g.l., uys, c.j.e. & du plooy, e., 2025, ‘barriers and facilitators of return to work for loss of income claimants: healthcare workers’ perspectives’, african journal of disability 14(0), a1442. https://doi.org/10.4102/ajod.v14i0.1442 original research barriers and facilitators of return to work for loss of income claimants: healthcare workers’ perspectives gofaone l. modise, catharina j.e. uys, eileen du plooy received: 16 apr. 2024; accepted: 17 feb. 2025; published: 04 june 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: road traffic accidents (rtas) are a global and public health concern affecting a third of the world’s population mainly in lowto middle-income countries, particularly affecting young people. returning to work (rtw) following an rta is essential for better health and financial outcomes. the motor vehicle accident (mva) fund botswana assists loss-of-income (loi) claimants with medical assistance, compensates for loss, advocates and facilitates rtw. objectives: the study aims to identify barriers to and facilitators of rtw for loi claimants as experienced by health care workers (hcws). method: a qualitative explorative design included six healthcare workers who had worked with the mva fund on rtw for at least 5 years through purposive sampling. data collection was done using a focus group discussion. thematic analysis was conducted using atlas.ti, with data interpretation guided by the ecological case management model. results: the main themes were healthcare systems, legislation and insurance systems, personal and workplace systems, which were further classified into eight subthemes relating to barriers and facilitators. barriers included ineffective case management and how claimants perceived work. facilitators included clear insurance rtw guidelines and workplace support and education level. conclusion: successful rtw can be achieved through multidisciplinary collaboration of hcws. while legal and healthcare systems play vital roles in rtw, personal factors and workplace systems cannot be ignored. contribution: understanding the barriers to and facilitators of rtw will assist in implementing rtw interventions to improve patient outcomes, health, livelihoods, quality of life and guide rtw operations to ensure a coordinated process in the insurance industry in africa. keywords: barriers; facilitators; return to work; claims disability management; road traffic accident injuries; case management. introduction background occupation is recognised as a fundamental aspect of human life, encompassing the meaningful and purposeful activities that individuals engage in as part of their daily existence. it extends beyond mere tasks or work to include all forms of doing that contribute to well-being, identity and social participation. curtin et al. (2009) stated that an occupation must possess five key characteristics: it must be active, purposeful, meaningful, contextualised and human (curtin et al. 2009). similarly, baum, christiansen and bass (2024) define occupations as what we do, emphasising that they form the basis of how we feel about ourselves and how we perceive our identity (baum et al. 2024). according to the world federation of occupational therapists (wfot), the aim of occupational therapy is to: … promote, develop, restore, and maintain abilities needed to cope with daily activities to prevent dysfunction. programs are designed to facilitate maximum use of function to meet the demands of the person’s working, social, personal, and domestic environment. (www.wfot.org) therefore, occupational therapists (ots) play a vital role in enabling individuals to engage in meaningful occupations, particularly after an injury or life-altering event. this is equally important for injured workers, as engaging in work has been shown to contribute positively to health and overall life satisfaction (soeker 2014). reintegration into the workplace is a priority for stakeholders following an injury or sickness. return to work (rtw) is an effort to enable the workplace reintegration of an employee following absence after a sickness or injury (american occupational therapy association 2021; whiteford et al. 2018; wilcock 2006). working contributes to positive health and life satisfaction, among other benefits (cancelliere et al. 2016; soeker 2014; wilcock 2006). being unable to work because of illness will result in considerable costs because of disability, sickness, absence and loss of productivity. any disability arising from road traffic injuries (rtis) is not only a health issue but may impact participation in social activities and working life (abedi et al. 2022; loisel, anema & anema 2013). similarly, employers bear excessive costs of hiring replacements when injured employees have not returned to work. insurance companies also suffer economic losses from work disabilities and welfare pay-outs. therefore, rtw is of economic benefit and interest to all stakeholders (figueredo et al. 2020). road traffic accidents (rtas) are a growing public health concern; they burden healthcare systems (hcss) and the individuals who suffer a loss of income (loi) because of them. they affect not only those who encounter rta but also the economies of the countries affected. the rtw process following rtas requires prompt collaboration between injured employees, health care workers (hcws), employers and funders or compensation boards (cancelliere et al. 2016; collie et al. 2019; giummarra et al. 2017; pelissier et al. 2017). effective and well-coordinated rtw programmes are positively associated with successful rtw (gane et al. 2019). however, the increase in rtas, their socioeconomic impacts and the need for disability benefits threaten the sustainability of social security agencies such as the motor vehicle accident (mva) fund botswana that invest in rtw programmes (stefan et al. 2012). for vulnerable populations, such as people from low economic backgrounds and people with disabilities, failure to rtw may exacerbate their poverty (jain et al. 2020; kamdar et al. 2020). early rtw is paramount for people in low-income brackets as their loss of employment or income compromises them further. the mva fund botswana compensates victims of rtas and implements rtw programmes for these individuals. road traffic accidents are a leading cause of morbidity and death worldwide, especially in lowto middle-income countries (lmics) (world health organization 2020). botswana’s fatality rate (20.1 per 100 000/year) remains higher than the global rate (17.4 per 100 000/year) and continues on an upward trajectory which is of concern (juillard et al. 2010; kenardy et al. 2014; munuhwa et al. 2020; mwandri & hardcastle 2018; world health organization 2020, 2023). in botswana, rtas constitute a significant cause of mortality and morbidity, with 68% of the deaths being preventable (motsumi et al. 2020). the frequency of rtas, inadequate emergency and healthcare services increases medically preventable deaths and disabilities, experienced in sub-saharan africa (ssa) and most lmics (chatukuta 2020; motsumi et al. 2020, 2022). the mva fund botswana supports claimants with medical undertakings that cover assistive devices and quality-of-life enhancements, among other benefits. in addition, the claimants receive rtw advocacy, with those losing their income being eligible for a loi benefit. the loi benefit is payable upon assessment and capped at bwp6000 ($520.29) per month or the prevailing minimum wage rate for the period of incapacitation (motor vehicle accident fund botswana 2018). the mva fund botswana must facilitate rtw programmes for such claimants where hcw providers are central to the facilitation of the rtw programme both at facilities and internal to the mva fund through the case management department. case management is defined as a: [c]ollaborative process of assessment, planning, facilitation, care co-ordination, evaluation and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources to promote quality cost-effective outcomes. (case management society of america 2018) (p.6) case management at mva fund botswana is intended to support claimants injured in rtas through medical and rehabilitative assistance to improve their chances of attaining optimal functioning and gaining independence. the fund collaborates with medical professionals, health facilities and family members of the injured in the claimant’s rehabilitation process (mva fund botswana 2020). where an rta occurs, the fund pays for the cost of care provided by the hcws, from emergency medical services to rehabilitation and rtw. health care workers determine the cost and duration of the benefit through either sick leave, a functional capacity evaluation (fce) or occupational medicine assessment outcomes. where advocacy can be held for reasonable accommodation at the claimant’s workplace, the hcws lead the advocacy through the rtw programme. through this process, the fund manages the claimant’s rehabilitation journey and engages with all relevant stakeholders such as the claimant’s employer to return them to work (figueredo et al. 2020). returning claimants to work also directly benefits the fund’s financial sustainability when the loi payout ceases and produces an active member of the community. returning claimants to work is also a benefit to the employers as they retain their talent and resource and do not incur expenses related to recruiting and training replacement employees (mva fund botswana 2020). therefore, claimants’ lived experiences are vital in informing funders of interventions and what possible barriers and facilitators to rtw could be. the relationship between hcws’ responsibilities, the duration of compensation claims and their role in facilitating rtw remains poorly understood (ng et al. 2021). although rtw barriers and facilitators are well known, information about rtw following rtas in limc or ssa is lacking. in addition, rtw also affects workers injured at work who may need to be facilitated to rtw. our qualitative study investigated barriers to and facilitators of rtw for loi claimants through the lens of the hcws’ experiences and is a continuation of gaining a deeper understanding of the problems claimants experience in rtw within hcss. theoretical framework the ecological case management model and workplace arena for disability primarily focuses on the perspectives of all stakeholders (loisel et al. 2013). the model conceptualises rtw in addition to personal systems determined by complex interactions between the workplace, disability payers, insurance carriers and hcws. the arena (figure 1) appreciates the injured worker at the centre of the system, influencing their rtw. figure 1: ecological case management model of return to work. the model identifies the following four main themes that are used for deductive analysis: the hcs; the legislation and insurance system (lis), encompassing the compensation system with its local regulations and actors; the personal system (ps), encompassing social relationships and, last, the workplace system (wps), with its main sociotechnical structures. healthcare workers therefore play a vital role as part of the hcss and are often a link of care and advocacy towards the claimant, the wpss and the legislation and insurance system. methodology study design and setting a qualitative, explorative design, using a single focus group discussion, allowed the first author to build a robust understanding of what hcws experience as barriers and facilitators of claimants’ rtw through the lens of hcws experiences who worked at the mva fund botswana. our study was conducted within the mva fund organisation in gaborone, botswana. the authors had access to the fund’s database and the hcws who participated in the rtw programme. although the focus group discussion was held in gaborone, the hcws support claimants from all over botswana. study population and sample the population of interest was hcws who worked with loi claimants on the rtw programme in the mva fund botswana. the sampled hcws would have worked closely with the claimants on their rtw journey through the mva fund botswana’s rtw programme. the experiences of hcws having worked with claimants in their effort to return them to work from the acute stages, through rehabilitation and ultimately rtw, are not known. six multidisciplinary hcws with at least 5 years’ experience at the mva fund rtw programme were purposively sampled based on their knowledge and experience. the hcws would have been engaged by the mva fund through their different institutions whether public or private as a part of the rtw programme from january 2015 to december 2020. an email was sent to all the hcws who were on the mva fund database and met the inclusion criteria. once they acceded to the request or showed interest, hcws were recruited via email, and a convenient date and venue for the focus group discussion was arranged for those who accepted the request. data collection and organisation information explaining our study was shared before the focus group discussion, and written informed consent was sought prior to the focus group discussion. the focus group was conducted mainly in english, but participants were encouraged to engage in the most comfortable language (setswana or english) throughout the 2-h discussion. the focus group discussion was audio recorded and saved on the first author’s password-protected laptop to enhance confidentiality. the recordings were then transcribed verbatim (leavy 2017) by a trained bilingual research assistant, who is trained in research methodology. a second bilingual research assistant who is also trained in research methodology translated the transcriptions into english and verified the correctness of the translations against the audio recordings. the translated scripts were member checked by one of the focus group discussion participants, and the correctness of the translations was verified, thereby ensuring transferability. the above steps ensured the rigour of the study. to enhance credibility, the first author used probing questions to sustain deeper engagement with the hcws and triangulation of sources among the hcws to gain a deeper understanding of some of the statements made (lincoln & guba 2013). the focus group lasted almost 2 h until saturation was reached. records were meticulously kept enhancing authenticity, with a clear decision trail, ensuring consistency and transparency. to enhance dependability, the first author engaged the second and third authors to debrief and review the inquiry process and the data. the whole team interpreted and recommended findings to ensure consistency. the first author kept a reflective journal to reduce bias having worked at the organisation that was being researched (lincoln & guba 2013). ethical considerations ethical clearance to conduct this study was obtained from the university of pretoria faculty of health sciences research ethics commitee (no. 255/2021). informed and written consent was also sought from the mva fund botswana’s chief executive officer (ceo). the ministry of health botswana research unit further issued a study permit for the research (no. hrdp:6/14/1). all participants provided written consent and an oral consent to be audit recorded. data collection materials the focus group discussion (fgd) questions explored hcws’ experiences working on the rtw process with mva fund claimants and whether the return-to-work programme was coordinated effectively and documented to meet stakeholders’ expectations. the hcws were initially asked to share from their experiences what they believe made rtw easier or more difficult for loi claimants at mva fund botswana. they were further asked from their experiences if the loi benefit made it easier or difficult for the loi claimants to rtw. finally, they were then asked what they imagined could be done to improve the rtw process and programme. these were done with probing for statements in which the first author needed further elaborations. a pilot study was conducted before the focus group discussion with a sample of three hcws who were not part of the study but matched the inclusion criteria and had experience working on the rtw programme to gauge their reception of the questions. the questions were further refined with the second and third authors for credibility and trustworthiness to ensure that they met the study’s aims and to reduce bias from the first author who had worked at the organisation. this was done to verify whether respondents would easily understand the questions (creswell & poth 2018). subsequently, the fgd questions were revised to improve their understanding and repeatability. data analysis the authors employed a hybrid thematic analysis, integrating both inductive and deductive reasoning. this mixed approach highlights the value of combining theory-driven analysis with data-driven insights, ensuring that the ‘voices of the participants are valued, while simultaneously allowing for more theory-led analysis’ (proudfoot 2023). other researchers have supported this approach, which involves the use of pre-determined themes, derived from an established theoretical framework – in this case the ecological case management model. this data analysis framework was developed through engagement with existing evidence and the mva fund case management setting, representing a deductive component of the analysis (proudfoot 2023). at the same time, the inductive component involved the generation of themes directly from the data. the sub-themes emerged organically from the data, complementing and mutually enhancing the predefined themes. data analysis was conducted using braun and clarke’s thematic analysis approach (braun, clarke & gray 2017). the author applied deductive coding to categorise the main themes and used inductive reasoning to identify sub-themes. although braun and clarke’s six-phase process for thematic analysis was used as a guiding framework, it was adapted in our study because of the predefined theoretical framework – the ecological case management model, which structured the analysis into four main themes (braun et al. 2017). phase 1 familiarisation with the data: the authors familiarised themselves with the data before uploading them to atlas.ti 25, a qualitative data analysis software that supports researchers in conducting thematic analysis as outlined by braun and clarke (atlas.ti 2024). phase 2 generating initial codes: after familiarising ourselves with the data, we proceeded to generate initial codes within atlas.ti. these codes represented meaningful smaller components of the research topic with relevant text coded according to the research question, ‘what are the barriers and facilitators of rtw and what made it easier or difficult for the claimants to return to work?’. they identify and categorise important features of the data, which lays the foundation of emerging themes. this is vital in ensuring the data are codified; the authors had to pay attention to detail and do this using a structured approach. phases 3 and 5 (integrated): the generated codes were then categorised into the four primary themes of the ecological case management model, as proposed by loisel et al. (2013): hcss, personal systems, wpss and legal and insurance systems (loisel et al. 2013). phase 4 reviewing themes: given the diversity of the ideas emerging from the data, subthemes were generated through inductive reasoning where themes are developed directly from the data, without imposing a pre-existing framework or theory. this approach allows themes to emerge naturally, capturing the depth and complexity of the dataset. for our study, inductive analysis was particularly valuable as the predefined ecological case management categories could not fully accommodate the emerging meanings within our data. as a result, the following are subthemes of the ecological model: (1) workplace systems – external environment, organisational, department, job positions; (2) healthcare systems – interdisciplinary and inter-organisational team, multi-disciplinary team, other healthcare profession, attending physician; (3) personal systems – physical, cognitive, affective and social relationships; and (4) legal and insurance systems – compensation agent, insurer case worker, regulations of jurisdictions, provincial or federal laws (atlas.ti 2024). phase 6 categorising barriers and facilitators: the inductive subthemes were then categorised into barriers and facilitators for hcws to recognise and implement following the dissemination of findings. each sub-code was generated based on the unique characteristics and qualities emerging from the data as quoted from the participants and not pre-conceived notions. phase 7 finalising themes through iteration: the iterative process included merging overlapping subthemes, particularly those with lower frequency, subdividing broad themes into more precise subthemes and eliminating themes that lacked sufficient supporting evidence. through this process, the authors ensured that the final set of themes accurately reflected the data, capturing the richness and complexity of the studied phenomenon. the resulting thematic structure provided a comprehensive understanding of the barriers and facilitators of rtw (atlas.ti 2024). results the six healthcare workers who participated in the focus group discussion were mainly rehabilitation personnel who had participated in the mva fund botswana’s rtw programme for at least 5 years. the sample, as per table 1, included four occupational therapists and two physiotherapists (pts), three males and three females. these were made up from practitioners in the public sector, the parastatal, academia and private practice. the sample has general experience of the different sectors, how they have experienced working with mva fund botswana and their experiences in barriers and facilitators of rtw for the claimants they have worked with on the rtw programme. because of the limited population of allied healthcare in botswana, especially occupational therapists, the demographic details are limited to their years of experience and the sector in which they work, as the authors did not want to compromise the identity of those who participated in our study. table 1: socio-demographics of participants in the fgd. the four themes from the ecological case management model were used for deductive reasoning. inductive reasoning generated 18 subthemes (table 2). of these 18 subthemes, 10 were facilitators of rtw, while eight were barriers. table 2: themes, subthemes and the frequency of occurrence. healthcare systems all hcws are expected to ensure universal health coverage. for the hcss, the most common barrier was a lack of effective case management (table 2), followed by a lack of knowledge of the fund process and motivation for financial compensation by claimants. the lowest in terms of frequency was the overserving that the hcws had experienced from their colleagues that kept the claimants in care for longer than necessary delaying rtw. health care workers felt that the mva fund case management was ineffective in terms of processes that affected turnaround times and deliverables for rtw for both claimants and the providers as they were unsure of outcomes of their requests. health care workers described how professionals had limited knowledge of the fund’s processes, which limited their advocacy and, at times, interventions and referral pathways. healthcare system barriers when asked if they had signed a formal rtw agreement with the claimants, employer and/or mva fund botswana during the rtw programme they worked on, none of the hcws had ever signed a rtw plan with employers, funders or claimants. this was despite having similar agreements with other organisations they were involved with for rtw programmes. there was no formal guideline for compiling a rtw plan; they indicated that each hcw was doing what they deemed proper, which caused much confusion regarding expectations for employers, claimants and funders. other hcws did not know about specific services that could accelerate rtw or were unaware of their role in ensuring that the necessary resources are requested from the fund, such as previous medical records. in relating their experience, one participant echoed the lack of structure and effective case management, participant 2 lamented the lack of coordination of care and silo mentality in some healthcare facilities: ‘… a patient goes to hospital x for 3 weeks … 5 weeks … at hospital x and there’s no ot (occupational therapist), there’s no one. and then two years later take them to ot. otx is alone and she’s not collaborating with anyone, there’s no teamwork on this patient. so, how do you expect outcomes from this patient. that is why you end up with a myriad of problems leading from one to the other one to other …’ (p2, ot private practice, over 10 years experience) another participant echoed that the lack of effective rtw may be because rtw is deemed an afterthought, while participants believed that some of the barriers emanated from the mva fund itself because of a lack of structure in the rtw process: ‘… i think the challenges that i find let’s start from mva fund is that onecase managing of these issues, … out of nowhere eh a client will be referred to you. … maybe an employer was crying foul somewhere crying about – what is happening with this patient? i’m about to fire themi’m about to relieve them from work and then all of a sudden mva starts saying yes, we need to do something about it. and then when they come to you realise that aah but this person should have long been there, it’s after 3 years they come to you and expect you to do some return to work. i mean the employer has moved and you feel pity for the employer because umm they have uh they are production for instance especially most employers who are production oriented that they are not just a social service but the production oriented client or business.’ (p6, ot private practice, over 5 years experience) ‘hey, it’s just tiring even to deal with mva in things like that. so, it is not well structured …’ (p3, ot government, over 10 years experience) healthcare system facilitators health care workers identified two hcss facilitators, namely, early intervention and interdisciplinary collaboration. the hcws explained that when they intervened early and had all the information and collaborated among themselves and with the mva fund and employers, the claimants were more likely to rtw: ‘[w]here there was success … is … when we was working … together with mva – service provider, mva and then engaging the employer and then advocating … it could mean training the employer about whatever disability that there was … educating them on the issues … they could do job modification. they could do a number of things to facilitate to help this client go return to work. … i found them gore uh they were successful when we used to work as a group … as a team.’ (p6, ot private practice, over 5 years experience) ‘… the next thing is the collaboration that has been over emphasised. and it’s time framed. it’s they will say we want to know, in 6 weeks you say you are doing work conditioning or work hardening how far can you go in 6 weeks. after that time you sit down and review. there’s a lot of follow up in that as well … it’s the structure that works …’ (p2, ot private practice, over 10 years experience) legislation and insurance systems facilitators of rtw were effective, namely regional, national and international rtw laws or policies and transparent compensation agency processes for both medical intervention and rtw programmes. health care workers felt that rtw could be easier if some of the legislation-mandated rtw policies and if the mva fund processes were clear on how far they can assist the client. legislation barriers according to the lis theme, the most recurring barrier was the lack of an effective robust rtw regulatory framework. a robust rtw regulatory framework would drive much of what should happen on the ground, which can be cascaded to the national or organisational level. a robust framework will also negate the impact of occupational injustice. as botswana works towards redefining disability laws, rtw national legislation and the united nations charter on the rights of persons with disabilities (un-crpd) ratification are on the agenda. the hcws deemed the lack of rtw legislation a barrier to rtw, as employees were not protected, and at times their advocacy efforts did not contribute much to rtw without the law on their side. they found this challenging in their roles as advocates for the claimants: ‘some issues i think are system issues are originating from within the fund itselfa lack of uh a proper structure if any, a lack of a return-to-work policy at a government level. the fund doesn’t have a clear policy as to when can you really remove someone from the books, if they haven’t been compliant so there’s nothing really that hold them accountable. so that should be clearly articulated.’ (p4, pt academia, over 10 years experience) ‘[w]ho is really supposed to coordinate between the employer and the client and the claimant and the therapist.’ (p2, ot private practice, over 10 years experience) ‘but there’s no plan written.’ (p1, ot parastatal organisation, over 5 years experience) ‘i think uh the fund and it’s not because the fund doesn’t want but it’s because uh above the fund, we don’t have a regulatory framework as we were saying, a properly structured one. so there’s really a lot of loopholes that any of those are barriers to return to work.’ (p4, pt academia, over 10 years experience) legislation facilitators only two facilitators were identified: transparent compensation agency processes for both medical intervention and rtw programmes, followed by effective regional, national and international rtw laws or policies. legislation and the insurance system, as previously alluded to, offer some form of financial compensation in some instances and govern the rules of both compensation and rtw, which play vital roles in rtw. therefore, when claimants are clear on the process, they are likely to move on and also to establish expectations for all stakeholders, right from medical claims to rehabilitation to loi benefits. health care workers found that people were likely to rtw when they realised that they had exhausted all possible assistance from the mva fund botswana. when the stakeholders worked together, hcws felt that the success rate in advocacy and rtw was high: ‘success came when mva fund uh is fully engaged umm to the extent that sometimes the fund would even ask that you go to meet with an employer and the with the claimant also available and you’re able to have that dialogue, those cases are usually successful.’ (p6, ot private practice, over 5 years experience) ‘and now when we talk about mva comparing it with other with other companies you find that some companies are more structured. the fund needs to develop a well-structured return to work case management process’ (p4, pt academia, over 10 years experience) ‘the issue that also mva is a social protection, you see. this it’s an organisation that gets talked about at kgotla meeting you know. makes it very vulnerable … at the parliament at that level.’ (p6, ot private practice, over 5 years experience) the hcws recognise that some mandates are beyond the scope of the fund; however, through legislation and other political platforms, a structure can be developed that can swiften the process of rtw. personal system three personal system themes related to cultural barriers; how claimants perceived the value of work, followed by occupying a heavy or manual job type. facilitators identified under this main theme were a positive social status, networks and support. within this sub-theme was the motivation to work or rtw, especially for young people and the employee’s reputation and relationship with the employer. personal system barriers in the ps, there were three barriers in terms of the value of work, which varies by job or position type. only two facilitators were identified, namely ‘positive social status, networks and support’: ‘umm. you know what there is a degree of a culture of entitlement umm which just doesn’t plague umm people who are low earners or unemployed, some wonder … should i do go for loss of employment or should i go back to work.’ (p4, pt academia, over 10 years experience) ‘they want the government to do this. it’s just the mentality of saying what can i get. (from the government welfare programmes) and if you can get it without doing anything. i think it is not to say that the low-level income people we are like. however, i think it is a certain understanding. they don’t understand that occupation on its own like he was saying it gives you purpose.’ (p3, ot government, over 10 years experience) ‘because they think … i have had an accident, so mva can do this and this for me. however, even if they do not know, they will push it to see if they can get it. therefore, we have that … batswana sometimes we don’t value uh value work. umm. that work is not just about getting money. it’s about ouryou know-whole wellbeing.’ (p3, ot government, over 10 years experience) personal system facilitators the most frequent subtheme under the personal systems’ facilitators was positive social status, networks and support. these factors often offer claimants better healthcare because of access to better healthcare services, better options with regard to redeployments and role modifications because of higher education training: ‘those that are doing well financially … are motivated … because it affects … their livelihoods financially much more. you have an executive who is injured … has a business, they don’t want to get bucked down with. disability so they do the best they can they are a bit aggressive they are quite motivated, “and you find that the spouses … the wife in this case the money that they are receiving from mva won’t be enough. we had eh a finance officer who was high ranking in the government and the money that he is going to get was almost nothing compared to his salary. he did not want to be pitiful … they had debts that needed to be paid and things like that …’ (p3, ot government, over 10 years experience) ‘and … performance … promotion. so now her performance was low. now she is stressed that if i don’t perform, how much is my boss or the employer going to tolerate of me under performance. but for her she has options like you are saying, high income earning they have options. so, she was now considering career change. so instead of going back to that particular job she was now thinking i can go and do farming because she has a farm somewhere … so those are some of the things that affect yeah. the process of returning to work.’ (p5, pt private practice, over 5 years experience) ‘… okay my husband is not high-income high income but fractured his elbow, what i saw him do i’ve never saw any of my clients do. you know where he goes through therapy and rehab and he is told by orthopaedic specialist by his physiotherapists by the ot that this is as much as you are going to get with your arm … since april this year he has been working with no ot, no physio, no orthopaedic specialist to get his arm where he wanted it to. the type of motivation … because he knows what he has to lose. and what he has to … i’m just talking about being intrinsically motivated. when you have something to lose its more.’ (p2, ot private practice, over 10 years experience) workplace systems work demands, organisational factors and expectations affect rtw prospects, with studies indicating a direct link between physical work demands and work absenteeism, especially where there is a high work pace and problems with relationships with colleagues. barriers and facilitators under the wpss theme, two facilitators were workplace support and educational level, while the barriers were lack of workplace support and reasonable accommodation: ‘[t]hose that are doing well financially you know they are motivated because it affects their livelihoods financially much more. so, you have an executive who is injured who has a business, a cattle-post who has this going on and they don’t want to get bucked down with uh disability so they do the best they can they are a bit aggressive they are quite motivated.’ (p4, pt academia, over 10 years experience) ‘it frustrates the client and also the employer because they don’t know what to do but they need this person to go to work. and then the other thing that i have observed is looking at the class 9 employees that we are talking about. one example is a guy i was working with who was a combi driver, he was involved in an accident as a passenger not his combi. his combi was parked home. but immediately when he was involved in an accident he was taken to the hospital. the owner of the combi had to employ someone.’ (p5, pt private practice, over 5 years experience) ‘company x is not a very structured employer like company y … those ones would be more advanced in terms of their systems on how to they have hr systems. so, it meant that those who i was mostly successful with were companies which were organised like company y. but these ones you will find where there is no structure or not organi2ed, they’ve really moved on and left the client.’ (p6, ot private practice, over 5 years experience) ‘[y]ou’ve finished you have to there is no way to redeploy them to. because where they are there’s only one job. so, the key thing is to go back to what other skills do they have.’ (p1, ot parastatal organisation, over 5 years experience) work demands, organisational factors and expectations may affect rtw prospects, with studies indicating a direct link between physical work demands and work absenteeism, especially where there is a fast work pace and relationship problems with colleagues. employers’ willingness to return their workers to work also seems to positively influence disability duration and costs (loisel et al. 2013). discussion our study aimed to identify barriers and facilitators of rtw for mva fund loi claimants following an rta as experienced by the hcws through an fgd. there were four barrier themes within the rtw ecological model: healthcare system-barriers, legal and insurance systems barriers, personal systems barriers and wps barriers and four facilitator themes: healthcare systems facilitators, legal and insurance systems facilitators, personal systems facilitators and wpss facilitators. the most frequent barriers were observed under the hcss theme, followed by the personal systems theme. facilitators were mainly noted under the legal and insurance systems and wpss themes. these agree with previous studies despite such studies being from high-income countries. the lack of coordination and structure of the rtw programme was the most prevalent barrier, which also cut across multi-disciplinary cross-function. there was no accountability from either party because of a lack of documentation on the expectation of the programme. there were no formally established responsibilities by either party, despite the hcws having signed and agreed processes for rtw with other organisations they worked with and having appreciated the effectiveness of a structured documented process. studies indicate that a well-structured and coordinated rtw programme increases the likelihood of rtw (gane et al. 2019; wilbanks & ivankova 2015). communication between all stakeholders, employers, employees, hcw and funders has proven to be critical in establishing everyone’s role and responsibilities and ensuring they are fulfilled to the benefit of the client’s rtw (cancelliere et al. 2016). the hcs plays a central role in delivering both preventive and curative care, encompassing the personnel who provide the care and the facilities where the care is administered and all hcws are expected to ensure universal health coverage. within the hcss, a lack of communication between hcws, funders and employers may negatively affect the likelihood of returning to work. role clarity is vital especially in complex injuries, as a lack of clarity can bring confusion and conflict between the stakeholders (kosny et al. 2018). therefore, working in silos and in conflict will affect the client’s rtw as per our study’s findings. recent studies have indicated that medical care provided through workers’ compensation tends to be more costly than care provided through the general health system (hani et al. 2023). studies have reported contradictory results regarding the effects of compensation on work absenteeism. comparisons between studies are hampered by differences in legislation or insurance rules in different countries and states. in addition to hcss barriers and facilitators, chatukuta (2020) indicated that in namibia claimants who receive state care are often less served than are those served by the mva fund namibia, as they have access to private care through their medical insurance, and being a state patient is viewed negatively by hcws. chatukuta (2020) also posits that government facilities usually have higher staff-to-patient ratios and longer waiting periods, thereby delaying access to care. others such as motsumi et al. support these findings (motsumi et al. 2020, 2021) on the burden of trauma care in botswana specifically. some of what hcws echo above about the presence or absence of certain specialties in other facilities resonate with the findings of chatukuta (2020), which makes case managing the loi claimant a challenge in botswana. in our study, hcws indicated that they were successful when all the stakeholders worked together, and there was a clear structure and coordination. other studies support this notion (cancelliere et al. 2016). therefore structure, a coordinated, documented rtw programme supported by national policies and regulations with explicit role allocations, time frames and outcome measures can be a facilitator of rtw in loi cases in botswana. over and above, a high burden of trauma, lack of trauma specialists and general healthcare challenges are barriers for case managers and funders in botswana. trauma care in botswana is inconsistent; therefore, its delivery poses challenges for practitioners as was echoed by the hcws in our study. however, botswana is a middle-income country with tremendous opportunities to improve trauma care. however, centralised trauma services have not yet been developed, and epidemiological trauma data are lacking (cox et al. 2018). road traffic accidents and a high trauma burden remain a concern for the ssa region (chatukuta 2020; sharma 2008). with regard to healthcare challenges as seen in south africa and some of the ssa, the process of creating a health system that is responsive to a population with both disability and varying rehabilitation needs is inevitably compromised by mediating differences in opinions for the identification of focus areas for service provision and resource allocation (lieketseng, cloete & mji 2017). legislation and policy are basic to the cost-effectiveness of health and occupational interventions. policymakers are responsible for deciding whether to include an intervention or social welfare benefit in the basic benefit package that is financed by taxes or social security contributions (loisel et al. 2013). in our study, the legal and insurance systems contributed directly to the factors that influence rtw. compensation systems, legal and insurance processes are acknowledged to cause stress. they are associated with increased disability, anxiety, depressive symptoms and lower quality of life, with hcws at times finding it difficult to comprehend their role within the compensation system, thereby compromising disability management and rtw (collie et al. 2019). these were cited particularly where claims administration processes were not well defined or well coordinated. the hcw in chatukuta (2020) research, a study of the mva fund namibia, which operates similarly to the mva fund botswana, raised concerns regarding the ‘lengthy and complicated’ process of registering with the mva fund namibia, which often leads to access to benefits being compromised. the knowledge and awareness of the agency processes also facilitate rtw. however, the employment act in botswana is silent on rtw advocacy, and therefore most employers are restricted to the sick leave policy, which is about 20 days for private companies and 3 months for government employees and up to 6 months before formal laying off is activated (modise et al. 2023). this is short for any severely injured claimants, especially in a country where trauma care is not at its best or where early intervention is still a challenge. therefore, the laws do not protect persons with complex injuries and long-term work absences or disabilities to enable rtw. other disability models also support research arguing that administrative policies and processes can impede rtw (collie et al. 2019). for this reason, a rtw operational framework is vital for addressing these shortcomings when the barriers and facilitators are known. without knowledge of the barriers and factors affecting rtw in compensatory systems within the working population, as experienced by all concerned stakeholders, it is difficult to target interventions to reduce sickness absence and promote rtw (labriola 2008). we identified that compensation guidelines and rtw case management processes should be clarified for hcws and claimants to manage all stakeholder’s expectations, responsibilities and outcomes. effective rtw processes have also been attributed to success in rtw (gane et al. 2019); therefore, there is a need for the mva fund botswana to document its rtw process, clearly define and document the process with the employer, hcw and client to derive outcomes from the programme. the other findings regarding facilitators, which also came as recommendations were that mva fund policies, do not exist in solitude, but alongside other welfare or social security policies as set by the country. therefore, these directly impact on delivery of the mva fund rtw programme as the existing laws of botswana underpin it. the hcws indicated the need for rtw programmes to be entrenched at a national policy level, which would enable rtw to not be an ‘afterthought’ as indicated by the participants but to be at the forefront of all rehabilitation programmes. the current national policy on care for persons with disabilities was last reviewed in 1996 (chichaya 2019); therefore, there is a need for the policy to be reviewed to entrench areas such as rtw, advocacy and implementation of such programmes for employers as the country ratified the united nations’ convention on the rights of persons with disabilities (uncrpd). comparisons between studies are hampered by differences in legislation or insurance rules in different countries, when comparing the australian and american settings, whose laws support rtw initiatives. effective and timely rtw programmes are critical for achieving successful outcomes for the injured employee and the employer, and established programmes are cited as helping pave the way for successful rtw (wilbanks & ivankova 2015). there is now substantial evidence that the policy and practices of the administering agency can significantly impact on the health of injured workers (collie et al. 2019). claimants benefit from an evidence-based framework that advocates for them and empowers them to understand the importance of engaging in an occupation compared to receiving compensation. our findings show that without robust rtw policies, it will be difficult for the stakeholder to return claimants to work effectively. compensation can never replace the actual value of occupational engagement, purpose or meaningful engagement. long-term unemployment because of disability is not only expensive but also leads to loi, emotional trauma, reduced quality of life and higher mortality rates and social security and substantial societal costs (sjobbema et al. 2018). therefore, effective rtw programmes can contribute to people’s livelihoods, socioeconomic status and improved health outcomes. the hcws in our study did not see themselves as the change agents, advocates or facilitators of policies. there was also a need for empowerment and awareness as some of the processes the hcws were not aware of are on the fund’s public domains. health care workers perceived the personal systems barriers emanating from how claimants valued work, followed by the heavy-duty type of job or position the claimant held. only two facilitators were identified, namely ‘social networks and status’ and ‘motivation’. personal characteristics such as age, intrinsic motivation and socioeconomic status have been indicated to play both positive and negative roles in rtw (cartwright & roach 2016; giummarra et al. 2017; mackenzie et al. 1998). in botswana, loi claimants receive compensation only if they are unable to work; therefore, for low-income earners, compensation may exceed their usual income, and people may not value their work or push hard to rtw especially if the funds being received are adequate for their day-to-day cost of living. therefore, seeing loi as an incentive to not rtw was mainly observed in low-income populations who would also use the rta incidents to seek other welfare services provided by the government, thereby delaying rtw. this was a barrier to rtw and hcws found it tiring dealing with such cases. success was found in cases where motivation for rtw surpassed the motivation for loi, mostly where the claimants stood a chance to lose or if their earnings surpassed the cap applied by mva fund botswana. modise et al. (2023) described the socio-demographic class of the mva fund botswana loi claimants as mostly low-income earners who are in the informal sector without much formal education (modise et al. 2023). therefore, for these earners, disabilities put excess pressure on already existing economic challenges, and they may find it hard to comply fully to rehabilitation plans. eventually, this affects rtw negatively. as the country’s unemployment rate rises, it creates greater competition for employment (tinta 2023) and a rtw barrier for low-income earners as they are easily replaceable (modise et al. 2023). health care workers felt that even with this much motivation and healthcare support, loi claimants could not rtw if they had certain pre-accident occupations or job types where the injuries they suffered made it impossible to rtw even with support or modification (khorshidi, marembo & aickelin 2019). return to work was notably more complex for people with severe injuries and low education such as those in the informal sector. such claimants had manual jobs, and their jobs did not allow for much movement or modification within their field of work (ferdiana et al. 2021). work demands, accommodation, organisational factors and expectations affect rtw prospects, with studies indicating a direct link between employer and collegial relationships and rtw. this is because social support during recovery from an injury can increase motivation and a sense of inclusion (noll, mallows & moran 2022). we indicated workplace support as a facilitator and a lack of it as a barrier. employers’ willingness to return their workers to work also seems to positively influence disability duration and costs (loisel et al. 2013), and this could be attributed to the workers’ work ethic before the injury. the type of work the person did prior to the rta or educational level and social class has been also linked to being a predictor to rtw success (cancelliere et al. 2016). those who are highly educated have more options to move within the organisation or market while those in the informal sector or less educated have limited options, often leading to being released from work on medical grounds. in addition, those with a higher social class have more motivation towards rehabilitation as they understand what is at stake. health care workers have recommended that the mva fund should be better structured to facilitate the rtw process, with objective measurable outcomes and accountability from the claimants, employers, hcws and the fund. in their experience, when there was structure and collaboration between all stakeholders, who were kept abreast of the claimant’s rehabilitation proress, that is when rtw has been successful. health care workers have echoed that the lack of rtw policies at a national level makes it difficult to hold employers accountable or ensure the retention of vulnerable groups within the employment market. although hcws had instruments to measure rtw such as fces, there were no legal grounds for enforcing the employer to keep the claimant in work as the law did not recognise these if the sick leave period had elapsed for instance or to provide reasonable accommodation for the claimant. this idea is novel as it will inform policies and advocate for rtw, given this evidence, which is unique to botswana. limitations of our study our study was based only on the mva fund botswana; therefore, the results may not be generalisable to other insurance industries or mva funders. as some healthcare workers were private service providers of the mva fund botswana, they may have been biased in their response, fearing that their businesses may be affected. there was a lack of diversity of acute care providers, such as surgeons, in the sample; however, in the botswana context, the post-discharge teams and rehabilitation personnel are often the ones facilitating rtw. from a pragmatic perspective, our results might be relevant in similar contextual environments, such as workman compensation schemes and funders, such as the mva fund eswatini, mva fund namibia and the road accident fund south africa, which often share best practices on similar processes. conclusion we recommend that medical professionals should overcome the problem of working in silos to resolve disability and compensation cases, which can be solved only through multi-professional collaboration on rtw. in the mva fund botswana, rtw should be prioritised in terms of laws and policies, both national and international. organisations such as the mva fund and other legal institutions must support employers and employees in the recovery journey. however, social standing, education levels and support at work and home are important facilitators for rtw. socio-economic status and early intervention play a vital role in successfully completing the rtw programme. while the mva fund continues to advocate for claimants to be retained in work and provides support in the form of employer advocacy, paying out for both loi and medical assistance, more efforts are needed from the regulatory bodies to entrench rtw on both the employers, hcw and individuals who find themselves in rtas. health care workers need to be empowered to be advocates of both the public and private systems for the betterment of the rtw process, and stringent measures are needed for all parties to account on their role and to have a framework of reference that can be applied nationally for rtw processes that are owned by all stakeholders. acknowledgements the authors acknowledge the support from the organisation where the research was conducted under the motor vehicle accident fund for granting permission for the research to be conducted in their institution. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions g.l.m. is a phd student who is responsible for all the project administration, ranging from proposal to data collection, investigations, formal analysis and initial write-up of the draft. she is also responsible for arranging all the required financing for the study and was also responsible for the application for the funding received from the elizabeth casson trust. c.j.e.u. is the first supervisor for g.l.m. and was involved from the conceptualisation and refining of the project proposal, methodology, validation of the themes and editing of the manuscript as well as overall supervision of the student’s deliverables. e.d.p. is the second supervisor for g.l.m. and was involved from the conceptualisation and refining of the project proposal, methodology, validation of the themes and editing of the manuscript and co-supervision of the student’s deliverables. funding information the first author discloses that they received funding from the elizabeth casson trust. the authors received no other financial support from any funding agency in the 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https://doi.org/10.3109/09638288.2014.938177 wilcock, a.a., an occupational perspective of health, 2nd edition. thorofare, nj: slack inc; 2006. world health organization, 2020, who establishes council on the economics of health for all, who, viewed 18 november 2020, from https://www.who.int/news/item/13-11-2020-who-establishes-council-on-the-economics-of-health-for-all. world health organization, 2023, road traffic injuries, who, viewed 08 september 2023, from https://www.who.int/news-room/fact-sheets/detail/road-traffic-injuries. abstract introduction research methods and design results conclusion acknowledgements references footnote about the author(s) siya mbanjwa department of psychology, faculty of humanities, university of the witwatersrand, johannesburg, south africa clare harvey department of psychology, faculty of humanities, university of the witwatersrand, johannesburg, south africa citation mbanjwa, s. & harvey, c., 2023, ‘south african single mothers’ experiences of raising a child with a disability ’, african journal of disability 12(0), a1321. https://doi.org/10.4102/ajod.v12i0.1321 original research south african single mothers’ experiences of raising a child with a disability siya mbanjwa, clare harvey received: 28 aug. 2023; accepted: 02 oct. 2023; published: 17 nov. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: historically, in south africa (sa), single motherhood has been part of the landscape and continues to increase. disability in children is also increasing, yet it remains under-researched. mothers are often left to raise their children with a disability alone, yet their voiced maternal experiences continue to largely be unheard, particularly in sa. objectives: this study aimed to explore the lived experiences of single mothers raising a child with a disability in sa. furthermore, the aim was to explore how these mothers navigate their complex realities and practice of mothering, and to amplify the voices of mothers. finally, the study sought to shed light on the particular contextual factors that affect single maternal experiences in caring for a child with a disability. method: twelve south african single mothers raising a child with a disability between the ages of 7 years and 18 years were individually interviewed in this exploratory interpretivist study. thematic analysis was utilised on the data. results: the four themes highlight the complex, multi-level strain of raising a child with a disability, which has had a significant impact on the social, financial and emotional facets of single mothers’ lives. conclusion and contribution: the findings of the study are important for developing a thorough understanding of the needs of single mothers in this specific context as well as their daily experiences as mothers of children with disabilities. these needs include the necessity of psychosocial support and equipping single mothers with accurate knowledge about their child’s disability so that they can make better accommodations for themselves and their child. keywords: child; childhood disability; disability; maternal experiences; motherhood experiences; psychosocial support; single mothers; south africa. introduction a single mother is ‘a woman who does not live with a partner or spouse and who is the main caregiver for a child under the age of 18’ years, including women who are separated, divorced or widowed (wright et al. 2013:8). in south africa (sa), single motherhood can be traced back to the apartheid era; with the migration of men into the cities, women in rural areas were left with the sole responsibility of caring for their children (moore 2013). additionally, south african women have traditionally been limited to domestic jobs, emphasising the maternal carer as the social identity of women. single mothering has become increasingly common both internationally and in sa (statistics sa 2014). within divorce custody battles, children are likely to be left in the care of their mothers (dlamini 2006). some women choose to raise children on their own to assert their independence (golombok et al. 2016). furthermore, even in post-apartheid sa, absent fathers are a common occurrence (mkhize 2006). in sa and worldwide, there is a growing prevalence of childhood disability, yet it remains a relatively under-researched topic, especially in developing countries, including in sa (yoosefi lebni et al. 2020). raising a child with a disability brings about its own unique set of challenges for parents. these challenges are exacerbated by poverty, lack of resources and poor knowledge about disability (pelchat et al. 2003), factors that may be applicable in lowto middle-income (lmi) sa. the responsibility of caring for a child with a disability typically falls solely on the mother; given the stigmatisation and discrimination of disability, fathers are more likely to neglect their paternal role when their child has a disability (pelchat et al. 2003). furthermore, for most men, financial stability is central to practising fatherhood (kelly 2013), suggesting that the high rates of unemployment in sa may exacerbate the increasing rates of absent fathers. parents, particularly mothers of children with disabilities, have rarely been the sole foci in research. hence, insight into these maternal experiences is limited (o’connell, o’halloran & doody 2013). much of the literature on child disability appears to be centred on the emotional and caregiving costs on parents, offering overly simple perspectives of parenting children with disabilities (kearney & griffin 2001; mcconkey et al. 2008). research focusing on the lived experiences of mothers raising children with a disability has been scarce in lmi countries, including in sa (mkabile & swartz 2020; van der mark et al. 2019). the study referred to in this article aimed to explore everyday lived experiences and perspectives of south african single mothers raising children with a disability. the focus was on how single mothers of children with a disability navigate their complex realities and practices of mothering, amplifying the voices of these particular single mothers. furthermore, the study aimed to acknowledge specific contextual factors that influence single maternal experiences in caring for children with a disability in sa. research methods and design an exploratory, interpretivist qualitative methods approach was used (pham 2018). data were collected through in-depth, semi-structured individual interviews online via zoom or whatsapp video call, as this was the preferred option indicated by participants. non-probability purposive sampling was used to access participants (ritchie, lewis & elam 2003). twelve south african, single mothers with at least one biological child with a disability of school-going age (7 years–18 years) were interviewed. this specific age criterion of the participants’ children ensured that the children are old enough for the mothers to be able to reflect on years of experiences that they have had raising their child. furthermore, this age range ensured that the insights from the mothers are relatively contemporary as this adds to the richness of the data and contributes to current research. the participants’ children could have any primary disability as the focus of the study was on maternal experiences and less about a particular disability. lastly, each mother needed to be currently living with their child or at least has lived with their child for most of the child’s life. please see table 1 for details of the participants. an advert calling for participants was circulated on the first author’s facebook page and distributed to support groups of parents of children with disabilities. the six steps of thematic analysis (ta) were used on the data (braun & clarke 2006, 2023). table 1: participants’ biographical profile. ethical considerations ethical clearance was obtained from the university of the witwatersrand human research ethical committee (medpsyc/21/06). mothers were presented with an informed consent form before the interview. written consent was obtained from each participant. no identifying information is revealed here, and each participant has been given a pseudonym to ensure confidentiality and final anonymity. raising a child is primarily still seen as a woman’s role with the presumption that mothers will be available to provide care, while the pressure remains for single mothers to be able to maintain a job and be able to meet their child’s needs, often without assistance from the child’s father (gottlieb 1997). hence, single mothers take on a variety of demanding responsibilities when parenting their children, and these difficulties are heightened when their child has a disability (o’connell et al. 2013). in particular, single mothers who lack support and have few resources, such as in lmi contexts, find it particularly difficult and alienating to navigate raising a child with a disability. the overarching theme that emerged from the data is the multi-level strain of single motherhood in the face of child disability. the findings from the study will be presented next (see table 2 for themes from the data). results financial strain extensive costs caring for a child with a disability is expensive. although an old study, according to newacheck and mcmanus (1988), costs involved in raising children with disabilities were two to three times more than those for raising able-bodied children. furthermore, families in low-income settings have great difficulty in affording the costs of raising a child with a disability, and these costs take up 12% of family income (leonard et al. 1992; thrush & hyder 2014). all participants report expensive disability-related treatment for their children, including surgeries, medications and therapies. in addition to paying for services, participants must travel far to appointments highlighting the lack of and difficulty in accessing resources. as it is too expensive to begin or sustain these, five participants have stopped taking their children for treatments, and others report that their children are on long waiting lists for services: ‘i don’t have the finances to put him on chronic medication. i don’t have the finances to actually go to someone that can really determine what would be the medication for him.’ (elizabeth, female, single) ‘… i have been trying to get her to wear normal [shoes] because her special shoes are expensive.’ (busisiwe, female, single) table 2: overarching themes: multi-level strain of mothering a child with a disability. ten participants’ children do not have medical insurance, which forces many of the mothers to rely on free or low-cost public healthcare. participants describe the challenges they face in this context, including lengthy wait times, a lack of follow-up care and a general lack of resources and specialists at their disposal. moreover, participants whose children are on medical aid relay that not all expenses are covered because their children’s treatment is continuous: ‘i have to pay for the medication out of pocket very often …because medical aids are only paying for what they have classified as chronic.’ (maria, female, single) ‘what she actually needs is to be going to physiotherapy … but going to those at the clinic is hard. it’s been two years waiting for an appointment.’ (nonhlanhla, female, single) ‘he needs a wheelchair and a walker frame … i’m just busy raising funds for his wheelchair …’cos with the government i can’t get it …’ (zanele, female, single) arguably, being a single mother of a child with a disability presents particular financial stressors. limited finances compared to families with able-bodied children, children with disabilities and their families are substantially more likely to live in poverty (shahtahmasebi et al. 2010). the connection between poverty and disability is a significant source of stress for single mothers: ‘… [o]ne of the challenges is that if she falls sick, i have to take her to the clinic which costs money. and then from there they refer her to the hospital and then i must ask for money … which is hard.’ (nonhlanhla, female, single) ‘… [i]f i could afford to, i would definitely have had … a psychologist … or i would have definitely had more tests done.’ (elizabeth, female, single) mothers of children with a disability endure a gruelling array of difficulties in caring for their children’s continuing and, at times, overwhelming needs. they have to take on the roles of caregiver, case manager and advocate for their children while navigating a variety of bureaucracies to secure the resources their children need (parish et al. 2005). only two mothers receive financial assistance from the fathers of their children, albeit inconsistently. furthermore, the south african government child disability grant1 is reported to be limited: ‘… [i]t’s very difficult getting them to their appointments, then paying for school and their other needs on the little child grant we get.’ (nonhlanhla, female, single) ‘… [i]t’s difficult to work and mother a child with a disability … the financial aid is not good enough.’ (sibongile, female, single) given the high costs associated with providing care for children with disabilities, parental employment is essential (lichter 1997). factors related to the severity or instability of the child’s disability are strong predictors of reduced hours or cessation of maternal employment (leiter 2007). mothers, in particular, do not continue with typical employment trajectories when their children have a disability, and this can have a considerably damaging effect on their family’s financial stability. eight of the participants here are unemployed, stating that their children’s daily needs prevent them from being able to work full time. mothers’ abilities to work are hindered by the time commitment required to care for a child with disabilities, as well as a shortage of accessible, affordable childcare (cuskelly, pulman & hayes 1998). another study found that mothers of children with profound disabilities experience considerable difficulties related to their caregiving responsibilities, including the need to work reduced hours, take leave and switch employment (shearn & todd 2001). similar findings are evident here: ‘… i am only working nightshift. i asked for this when she was born because i couldn’t manage. i didn’t have enough support.’ (busisiwe, female, single) ‘… i had to not work the whole year to follow up on two operations that he had to get … you need to either … to not work and then suffer the consequences of unemployment or continue working and then your child doesn’t develop.’ (sibongile, female, single) ‘i can’t [maintain a fulltime job] because i must take care of her.’ (martha, female, single) ‘it was hard [to keep fulltime employment] before i found him a school.’ (lindiwe, female, single) finding childcare is a major factor in maternal employment. concerning childcare for children with disabilities in sa, very little is known. participants rely on family members and others to help take care of their children; yet, some mothers feel they cannot ‘burden’ these others which prevents many from working: ‘keeping work is hard because when she comes back from school, she needs someone to care for her. sometimes they’ll drop her off with the neighbours but eventually even they begin complaining about her, so eventually i had no choice than to just care for her fulltime.’ (nonhlanhla, female, single) ‘i’ve recently resigned, and i stay home with him … my mum has been taking care of him for the past seven years so i must take over now because he is growing.’ (zanele, female, single) busisiwe made the difficult decision to place her child in a permanent care facility so as to maintain her employment, while others decided to enrol their children in school. however, participants worry about how challenging it is to find suitable and inexpensive education and childcare options: ‘… i have enrolled them in an academy … but it is quite expensive. i had to make quite a few cuts and changes … to ensure that i can afford it.’ (elizabeth, female, single) ‘… she was [in school … i have to pay school fees for her and transport. that is the challenge and now i am staying with her. she doesn’t go to school.’ (martha, female, single) children with disabilities have continuous demands for specialty care in order to maintain their functioning and health (perrin 2002). it can be challenging for single mothers to balance the demands of their jobs with the needs of their children. arguably, participants are left in a paradoxical scenario between choosing to care for their children or being able to support them financially. as a result, many single mothers are forced to rely on government grants and other forms of financial aid that are scarce and insufficient to cover their children’s basic needs. it does not take a village strain and rejection in romantic relationships raising a child with a disability causes significant life disruptions, increased levels of distress and marital tension (sadiki 2023). unlike the african proverb ‘it takes a village’ to raise a child, the single mothers in this study are largely isolated in their mothering of their children with a disability. the requirement for comprehensive home healthcare and the need for respite are significant when raising a child with a disability, having an adverse effect on parents’ mental and physical health, eliciting feelings of shame, guilt or low self-esteem and drawing the focus away from other aspects of family functioning. all of these stressors can have an impact on the parents’ relationship (reichman, corman & noonan 2008). parents of children with disabilities are substantially more likely to be separated compared to their counterparts who are raising able-bodied children (mccoyd, akincigil & paek 2010). additionally, having a child with a profound disability increases the likelihood of a separation between the parents, resulting in mothers being left alone to care for their children (pelchat et al. 2003). according to pelchat and colleagues, mothers find it difficult to adjust to the needs and demands of their children with a disability, whereas fathers have difficulty adapting to the actual disability. many participants in this study believe that their partner’s inability to cope with their child’s disability led to their separation. arguably, the participants’ partners fled when confronted with the knowledge that their children have a disability; the majority of separations occurred during early childhood, when the child’s disability was first diagnosed, and parents were navigating their initial feelings about the disability: ‘… [a]round my son’s 5th birthday he came up with an excuse and couldn’t come. i knew he was leaving … he left for good … i no long even consider his dad in our lives … i feel like he doesn’t consider our son to be worth anything and that feels that [child] won’t be able to take care of him in his old age which is why he is not investing in him. he only cares for his other children who are well, and he feels will care for him one day.’ (lindiwe, female, single) ‘… [w]hen the second one came along who had more sensory needs … i think in the end it just was too much for him …’ (elizabeth, female, single) ‘… [relationship with father] very strained. he wasn’t living in the same city as us. he wasn’t supporting him financially … he hadn’t seen my son for about the last two years before he passed.’ (maria, female, single) ‘… i have a child alone because the father has run away … he left after i gave birth … he doesn’t want the child.’ (busisiwe, female, single) ‘… [h]e’s an absent father. he used to come once in a while … now he’s completely absent.’ (sibongile, female, single) ‘… [h]e was the one who would take her to her check-ups and physio sessions … i think that maybe it became too much for him … when we got the diagnosis it caused me and her father to separate … he’s never come back.’ (nonhlanhla, female, single) eleven participants became single mothers after giving birth to their children with a disability. these results are consistent with those of a european study by di giulio, philipov and jaschinski (2014), which found 91% of their sample separated after the birth of a child with a disability. the single mothers in this study seem to have a range of emotions to the separation from their child’s father. they all feel abandoned. the belief that their child’s disability was the main factor contributing to their separation brings feelings of bitterness, anger and resentment. the fact is that their partner left an undesirable situation while they could not also elicit these various maternal emotions, including disappointment over the loss of a father figure for their children. as mothers, they do not share the same ‘privilege’ of being able to abandon their children with disabilities. one of the social ills that sa as a country is currently facing is the status of fathers’ absenteeism and their minimal involvement in the lives of their children (makusha & ritcher 2015). according to richter, chikovore and makusha (2010), sa has the second-highest prevalence of father absence, the lowest rate of paternal maintenance for children and the greatest rate of child neglect in the world. gould and ward (2015) found that 50% of south african children grow up in homes without their fathers. families with a child with a disability are particularly vulnerable because there is a considerable danger that fathers reject the child with a disability (zuurmond et al. 2016). there is compelling evidence that having a father in the home promotes children’s growth, well-being and family functioning (tracy et al. 2019). consequently, mothers suffer significant challenges as they are left behind to raise their children by themselves. furthermore, only two participants report that their children’s father maintains some level of financial involvement, albeit minimal, in their children’s lives. thus, most of the participants are left to shoulder the full financial concerns relating to the care of their children, while also being the sole caregiver: ‘he keeps stressing that yah he’s coming but he’s not. he doesn’t fulfil his promises, but i don’t worry much about him. i would be worried if he wasn’t sending money every month.’ (johanna, female, single) ‘… [p]hysically no, he’s just financially there. he’s an atm2 dad …’ (zanele, female, single) fathers are more inclined to disregard their parental responsibilities when their child has a disability because of the stigma and discrimination that accompany it (pelchat et al. 2003). furthermore, fathers of children with disabilities appear to associate the mother with the disability too, thus also rejecting her and leaving her to raise their child alone. contradictory responses from others most of the mothers in the study report that they can to various degrees rely on their own family members to help take care of their children: ‘i am also quite fortunate my mother and father … assist me with school pick up and drop off. he spends quite a lot of time with them … i call them co-parents.’ (maria, female, single) ‘i have two brothers and cousin brothers who are very supportive … with taking him to the toilet … getting him from the transport because he doesn’t come with a wheelchair from school … they just support me.’ (anna, female, single) however, some mothers find it difficult to rely on family assistance based on the profoundness of their child’s disability, leaving the single mother largely alone: ‘… they [family] say he’s heavy. so they can’t even carry him around … they can’t bath him …’ (anna, female, single). other participants share conflicting responses from their relatives; from taking time to support her to receiving negative feedback regarding her child’s disability, leaving her feeling rejected and alone: ‘… [w]hen you have a child with a disability your family rejects you … my mother wants nothing to do with me because i have a child who has a disability [crying].’ (nonhlanhla, female, single) ‘i think the whole thing [birth of her child with a disability] was difficult for everyone to adapt to because it’s the first time in my family that we get someone with special needs …’ (sibongile, female, single) ferguson (2002) contends that the sociohistorical environment is inextricably bound up with how a family responds to having a child with a disability. a family’s perception of what it means to be disabled reflects the larger framework of social attitudes and historical circumstances from which that interpretation originates. in the past, many south african tribes viewed disability as a curse from the gods and an omen of doom resulting in harsh, even deadly treatment of the child (mdziniso 2001; shabalala 2000). as the mother is the child’s primary carer, this assault and rejection are also directly reflected onto her, making her the target of prejudice and isolation: ‘when my son was first sick [disabled] we had tried to consult traditionally … he needed to go to his paternal family. so we went to [his] dad who then said that my son was sick because i hadn’t come [orgasmed] when i was pregnant.’ (tebogo, female, single) some participants’ families considered alternative explanations, such as them being cursed or that the paternal ancestors had not acknowledged their child, to try to understand why their children have a disability. this brings to light the underlying cultural assumptions and prejudices that prevent families from accepting both the mother and the child with a disability. according to goffman (2009), stigma not only impacts the experiences of individuals who hold the stigmatising attribute but also has a propensity to spread to those associated with the individual who holds the negative difference associated with the stigma. hence, mothers of children with a disability can experience courtesy stigma; their status in society is primarily defined through their children’s disability. the paternal family often believe the mother is responsible for the child and blame her for the child’s disability (sousa 2011). while the majority of the participants’ ex-partners rejected them and their children after the birth, so too did the paternal families: ‘… no one is involved … there’s no one willing to be involved in her life …’ (busisiwe, female, single). invisibility of motherhood ‘when your child has a disability, you have a disability’ for some mothers, the arrival of a child with a disability changes their expectations of motherhood and their notions of what is ‘normal’. in a study by lalvani (2008), some mothers recalled having stereotyped views of people with disabilities and a depressing mental picture of what life would be like for them as the parents of a child with a disability. prior to the birth of their own children, the majority admit that they had limited contact with people with disabilities. hence, some mothers find the disability diagnosis to be shockingly life-changing: ‘… it was tough … just hearing that your child has a disability. i thought of the worst case of a disability. it was shocking’ (anna, female, single). however, for other mothers, although the diagnosis was difficult to hear, it was a huge relief to finally understand their children’s presentation and be able to help their children: ‘i was literally almost relieved because … everything about who my son is made sense … it was almost a sense of relief but it’s been very, very stressful’ (maria, female, single). it appears that for mothers like maria, the relief is followed by worries about how to care for their children and their health, as well as a worry of what would happen to them and how their lives would be forever altered as their mother: ‘… i was relieved ’cause i felt i sort of knew that he was on the spectrum … but then actually realising that he wasn’t ready for school uhm i think it was a bit of a shock. but i think it was a bit of a wakeup call to realise that there is more to just knowing he’s on the autism spectrum.’ (elizabeth, female, single) ‘… [i]t took like ten years just to understand and accept the whole thing. so it was very difficult for years.’ (sibongile, female, single) ‘… so i was shocked …’ (johanna, female, single) the majority of participants appear to have eventually embraced their children’s disability; but despite this acceptance, it is evident how many changes they had undergone and, subsequently, how their meaning of motherhood has changed. participants shared their hectic schedules that revolve around caring for their children with a disability, resulting in a loss of close relationships and social connections. hence, having a child with a disability can drastically alter a mother’s life to the point where she feels as if she has a disability as a result of all the changes in her life. for example, nonhlanhla, a single female, said: ‘when your child has a disability, you have a disability’, and zanele. also a single female, poignantly stated: ‘i am the disabled one now as a parent with a child with disabilities. he is able to live his own life now but my life has changed’, emphasising the awareness of how their lives change as mothers. hence, raising a child with a disability may fundamentally alter how a single mother lives her life because she must constantly attend to her child’s complex requirements. this seems to support the notion that as a single mother of a child with a disability, her life no longer belongs to her and is now centred around providing particular care and safety for her child: ‘… [w]hen i wake i do everything for her. i have to bath, make food and then uhm i’m feeding … i do have to change diapers and all those things … it’s very challenging.’ (maria, female, single) and, johanna: ‘i need to prioritise her before anything.’ (johanna, female, single) advocacy and the need for psychosocial support ‘as a parent you need to be like pushing systems to work with you … you need to advocate for him … you need to fight for him to get what he deserves’. sibongile, a single female, illustrates the additional responsibility single mothers have while raising a child with a disability, which entails contending for their children’s care within the systems of care. mothering goes beyond only providing for the needs of their child and includes advocating for their child (scott 2010). according to this study’s findings, raising a child with a disability can be physically taxing, expensive and time-consuming. these factors are heightened by a poorly co-ordinated and frequently unresponsive system of service delivery and the fact that single mothers raising a child with a disability also spend a significant amount of time, energy and money on advocacy and other activities. notably, not all the mothers encounter hostility from medical professionals and thus do not feel the need to advocate for their children. many participants have positive experiences in healthcare settings to report, making a significant difference in their ability to care for their children: ‘… [t]he physio … the professionals at the school have also been really great.’ (tebogo, female, single) ‘the relationship with the psychologist is absolutely great …’ (maria, female, single) ‘… [t]he physiotherapist where they explained what kind of a disability he has, eh what normally causes it … they explained a lot of things so i would say i understand better …’ (anna, female, single) professionals who work with single mothers of children with a disability need to establish a foundation of openness, trust and respect. this openness is crucial to support the single mother and help her care for her child despite her many challenges. o’connell et al. (2013:7) found the value of mothers feeling heard by medical professionals and having others concur that their children could be challenging at times and that they too become stressed. these acknowledgements give mothers the experience of no longer feeling ‘invisible and alone’. this underscores how crucial psychosocial assistance is within the healthcare system: ‘people tend to ask about the child and not ask about us, the mothers.’ (zanele, female, single) ‘i am a human being as well with my own feelings and emotions.’ (margaret, female, single) ‘… [s]ometimes you need support … counselling as a parent …’ (martha, female, single) some of the participants saw their participation in the interviews in the study as an opportunity to not only speak out on behalf of their children but also share their struggles with other single mothers who had not yet accepted their own child’s disability. johanna, a single female, mentions that she has helped organise events for parents of children with disabilities. she cites the need for psychosocial assistance among single mothers: ‘there are a lot of people who are still in denial about their children’s problems, therefore we are trying to gather as much as we can so that we can support one other’. the majority of participants engage in support groups with other mothers of children with disabilities. they speak favourably of the effects of these interactions, stating that it is crucial to have a space where they can be honest about their everyday struggles, particularly at those times when managing their child with a disability was challenging, without fear of being judged: ‘i’m on a whatsapp parent support group … it’s always nice to be part of something where you can see that everyone is going through the same thing.’ (maria, female, single) ‘[support group] allows parents to speak up about their challenges. sometimes you think that what you’re going through is bad until you hear someone else’s story and it makes you cry out of gratitude that things aren’t so bad for you …’ (nonhlanhla, female, single) survival maternal ambivalence to disability diagnosis eight participants seem to have reached a point of some level of acceptance with regard to their children’s disability. included in these are an admission of change since the diagnosis, a claim of moving on with life, a suspension of the quest to learn the cause of their child’s disability, an accurate portrayal of their child’s abilities and a balance of claims regarding the benefits of raising a child with this disability: ‘… [t]here was a time when i was having a nervous breakdown because everything was so overwhelming. but i feel like i have changed, like i am someone else … overtime i think i have grown to accept. i still have moments when i wonder about my life and where i will end up …’ (nonhlanhla, female, single) ‘… i realised that it’s not the end. she is just a child. she may be different from other kids but i must accept who she is. i can’t blame anyone. who was supposed to have a sick child? and then everything fell into place. i accepted the situation.’ (busisiwe, female, single) ‘it’s just the adapting, to adapt it’s really difficult … i don’t think one will ever be fully content, maybe i’ll get to that level one day, but i’m way better than i was years ago …’ (sibongile, female, single) sibongile seems to suggest that something about the severity of her child’s disability may also play a role in how mothers come to accept their child’s disability. furthermore, barnett et al. (2006) found that mothers with the stressors of lower socio-economic positions and/or who identify as minorities, the majority of mothers in sa, have a higher likelihood of being unresolved about their child’s disability diagnosis. the following extract shows how when asked about their early reactions, at least five mothers mentioned financial worries and a lack of awareness about available resources, which made the diagnosis even more confusing and overwhelming: ‘he [their father] left me alone with my kids which made things very hard for me. we’ve had to survive on that [grant] which is hard because he needs nappies … most of the time she needs soft food. i am a single parent and i don’t work. so we need to use that money for food, clothes, and for her school fees.’ (nonhlanhla, female, single) mothers who have found some resolution with their child’s disability report higher social support and less stress in motherhood compared to mothers with unresolved feelings (sheeran, marvin & pianta 1997). additionally, sheeran found that mothers who appear to have advanced in the grieving process related to the trauma of finding out their child’s diagnosis (harvey 2015) reported that the support they received from other parents, friends and groups to be more helpful than did the group of mothers who were unresolved about their child’s disability. furthermore, mothers revealed that family support was their preferred coping strategy in the study by koydemir and tosun (2009). this was demonstrated in this study, where seven participants state that they relied on their family for assistance when they first learned of their child’s diagnosis. lindiwe, a single female, explains that she had been so overwhelmed and saddened by the diagnosis to the point that her mother took her child and raised him until she came to terms with his disability: ‘i was in denial and couldn’t understand why my son wasn’t normal. it was very hard for me to understand that and come to terms with it’. and tebogo: ‘… [i]t was very hard for me to accept it. thankfully my mother was still alive then and asked to take him and care for him. but i struggled a lot. my mom is the one who helped me begin to understand him more.’ (tebogo, female, single) in the study by koydemir and tosun (2009), mothers claimed that they eventually became accustomed to the circumstances and started to feel more optimistic about their child’s disability. a significant turning point for many of this study’s participants appears to have occurred when they gained more knowledge about their child’s prognosis and clarity about what their child could do and what their demands would be. evidently, mothers of children with disabilities need to be given reliable information that they can utilise to comprehend their child’s disability and assist their child (koydemir and tosun 2009). this is essential in helping mothers accept their child’s disability; it also helps to improve mother–child relationships and gives mothers more capacity to care for their children. maternal knowing, not knowing the reactions of shock, frustration and grief to the initial diagnosis of disability in one’s child are often the beginning of the experience of stress for mothers of children with disabilities (ferguson 2002; harvey 2015). following the mothers’ first reactions, they make an effort to comprehend and assess the situation and determine the meaning of the diagnosis in a medical and social context (lalvani 2008), which can feel both overwhelming and empowering: ‘once i started … to educate myself on what asperger’s was … it was almost a sense of relief, but it’s been very, very stressful.’ (maria, female, single) ‘the doctor explained to me that she struggles to breathe because of something going on in the lungs. i asked what that meant and they began speaking to me about possible developmental delays.’ (nonhlanhla, female, single) most mothers first receive answers to questions about the nature of their child’s disability from doctors, whose explanations, based on the medical model of disability, are often concentrated on the health issues that frequently accompany the diagnosis (lalvani 2008). however, research by lalvani revealed that mothers of children with down’s syndrome are more interested in the social significance of their child’s diagnosis than the medical one. following the diagnosis of the participants’ children, many mothers worried about the social effects of disability and issues related to what constitutes ‘normalcy’. arguably, the mothers display fear brought on by not knowing what to anticipate. sibongile explains: ‘… [i]it was very hectic … one minute your child is okay, everything is normal. the next minute they tell you … your child, he’s uh going to live in a different way. it was a very … state of confusion …’ (sibongile, female, single) koydemir and tosun (2009) explored turkish mothers’ experiences in raising a child with autism spectrum disorder (asd). it was discovered that most of the mothers lack accurate knowledge about their child’s disability. these findings are consistent with those of this study, where only nine of the mothers are able to name the disability of their children, and only half of the mothers can articulate their children’s symptoms, demonstrating the knowledge gaps within some mothers. some mothers, like anna, can speak confidently about the details of their child’s disability: ‘… now i can sit with someone and explain my child’s condition as if i’m a doctor …’, while zanele is still confused about her child’s disability: ‘… i am not sure what disability he has … they’ve explained to me that this is how he’ll be his whole life …’ arguably, some of the mothers feel misinformed because they lack knowledge resources because of limitations in the healthcare system: ‘… [a]t the hospital i was told that he’s just going to change the way of living, there was no informative way of them teaching you how to cope with this whole thing. one had to do their own research and learn through time.’ (sibongile, female, single) ‘the doctor … explained [child] had cp [cerebral palsy], although no one explained what kind. as time goes on only then did i begin to learn that cp differs. even now i am not really sure what cp she has …’ (busisiwe, female, single) when elizabeth was asked about what help she wished she had access to, she responded: ‘… [m]ore professional services. to be able to really … pin down the diagnoses … to be able to afford those specialists … i don’t have the money to go to a neurologist, but i do wish i could.’ (elizabeth, female, single) the difficulty in accessing healthcare and educational systems was identified by woodgate, ateah and secco (2008) as the most worrisome element contributing to parents’ feelings of helplessness and isolation. manifestations of the inaccessible system include: delaing with professionals who appear to lack specific disability training and knowledge; limited, inadequate and inappropriate resources deemed necessary in order to provide support for raising a child with a disability. professionals working with children with disabilities need to consider mothers’ feelings, needs and how intimately intertwined their lives are with their children (doody 2012). it is beneficial for professionals to be especially considerate with mothers and help them fully understand their child’s diagnosis, not only from a medical standpoint but to also provide additional support while they make sense of their child’s diagnosis and their life adjustments as mothers to children with disabilities. however, the results of this study suggest that not all mothers are receptive to learning about their child’s disability. not knowing may be a maternal psychological defence mechanism against understanding the demands and challenges their children and themselves face, which can feel unbearable. lindiwe, in particular, reveals her anxiety about her child’s prognosis and coming to terms with her life changes and expectations of her as the primary caregiver, which was too much to bear. instead, she remains uninformed and thus able to avoid having to come to terms with what feels like a terrifying reality: ‘… honestly they probably have [informed her about her child’s diagnosis] but i have been in denial for years. i was refusing to hear anything they would say at the hospital’. contrastingly, several mothers gushed about their understanding of their child’s disability and how over time they had mastered the healthcare system. maria discussed how she has relied on the knowledge healthcare workers have given her and has supplemented this with her own research to better understand her child and manage her everyday activities. becoming informed seems to have been a way to feel more in control after the initial shock of learning of their child’s disability. resilience up to now, this study has largely focused on the challenges faced by single mothers of disabled children. however, participants also demonstrate great resilience – the capacity to survive hardship and emerge stronger from it (heiman 2002): ‘… [i]t’s such a relief to talk to someone about mine and my child’s situation because maybe this audio can get to another parent who still hasn’t accepted things.’ (nonhlanhla, female, single) ‘… i think i’m in a stage whereby i’ve dealt with … most emotional things … i’m kind of content with the condition and how things are in life … it makes you stronger as a person …’ (sibongile, female, single) ‘somethings, no matter how difficult they are you must face them because you have no choice.’ (lindiwe, female, single) according to heiman (2002:169), parents raising a child with a disability stress the importance of welcoming their child with a disability, who ‘has the right to live like our other children’, objectively evaluating the situation and attempting to find workable solutions. in this study, johanna shares how she hosts informative events for parents with children with disabilities, displaying resilience and using her resolve to help herself and other mothers: ‘i really wish to encourage parents of children with disability to … start accepting and taking their children to get help’. furthermore, zanele reflects: ‘i don’t want people to say ‘shame’ on me … you have to hold your head high and be proud to be parenting a special child’. in one way or another, all of the participants have benefited from a variety of support, including extended familial, medical, educational and informal. according to heiman (2012), informed resilience is demonstrated through asking for help and by taking meaningful action to address one’s circumstances: ‘it’s just very overwhelming to do it on your own … i can’t imagine what people without support uhm how they do it …’ (maria, female, single) conclusion this study has highlighted the complex, multi-level strain of single mothers’ lived experiences while raising a child with a disability in sa. arguably, there is a significant need for psychosocial support interventions to be offered to these mothers that may be accessed in local communities. further research into community-based non-governmental organisations and services offered by the department of social development is called for. part of this support should include closing the knowledge gap these mothers have surrounding disability, their children’s needs, prognosis, as well as accommodations for themselves and their children. other support could come from the children’s fathers, their families and those around the mothers. consequently, single mothers of children with disabilities will feel less alone and isolated. acknowledgements competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions s.m. and c.h. contributed equally to this work. funding information the 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references footnotes about the author(s) madri engelbrecht division of occupational therapy, university of stellenbosch, south africa lynn shaw school of occupational therapy, faculty of health professions, dalhousie university, canada lana van niekerk division of occupational therapy, tygerberg campus, university of stellenbosch, south africa citation engelbrecht, m., shaw, l. & van niekerk, l., 2017, ‘a literature review on work transitioning of youth with disabilities into competitive employment’, african journal of disability 6(0), a298. https://doi.org/10.4102/ajod.v6i0.298 review articles a literature review on work transitioning of youth with disabilities into competitive employment madri engelbrecht, lynn shaw, lana van niekerk received: 07 july 2016; accepted: 18 may 2017; published: 29 aug. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the marginalisation of youth with disabilities from employment opportunities is evident from literature in as far as they form part of the larger groups ‘people with disabilities’ and ‘youth’. a focused view of programmes that assist youth with disabilities into employment has not been presented, despite the worldwide crisis of youth unemployment. aim: this review aimed to identify evidence on work transition programmes that are effective in assisting people with disabilities into open labour market (competitive) employment, as well as to highlight gaps in knowledge to inform future research on this topic. methods: literature and policy on programmes that support such transitions were considered, firstly from a global perspective and then with a view from developing countries. the salsa (search, appraisal, synthesis and analysis) framework was used to source and analyse information from a diverse set of documents. various online databases were searched for research papers published between 1990 and 2016, and websites were searched for reports pertaining to this topic. results: ninety-nine documents were selected to inform the review, out of an identified 259 scientific journal articles, policy documents, acts, organisational reports and book chapters. conclusion: a synthesis of findings was presented in a narrative that reflects the themes of youth with disabilities and employment in the world, work transition endeavours in the developing world and a specific focus on this group in south africa. the review revealed a gap in knowledge and evidence pertaining to youth with disabilities and employment, highlighting these as research foci, and emphasising the need for youth-focused research that generates knowledge about disability and transitions into the labour force. introduction across the world, youth have been identified as a vulnerable group who experiences low levels of employment. in 2014, 75 million out of the 200 million unemployed people worldwide were youth (international labour organisation [ilo] 2014). youth development has also become a critical priority for south africa. here, youth is defined as people between the ages of 14 and 35, with the upper age limit so high because of historical imbalances that were created by the apartheid regime (national youth development agency 2015). this age group comprises a disturbing 71% of the unemployed population (statistics south africa 2012) and is among the worst affected by the 2008/2009 recession (department of labour 2012). a minority group of youth, namely youth with disabilities, has not been prioritised by governments in creating access to employment for them. although south african policy identified youth with disabilities as a priority target group a decade ago, the government has, for example, opted not to apply a quota system in labour legislation that facilitates employment of people with disabilities, even though such a strategy is regarded a viable method to increase employment (ilo 2015). information about youth with disabilities is scarce. one reason may be that statistics about this group are reported as part of general disability statistics. for instance, current employment statistics in south africa reflect 1.2% of the workforce as people with disabilities (department of labour 2015), with no indication of the proportion of youth with disabilities. others have noted that youth with disabilities have largely been ignored in development efforts for young people, with more research focused on adults than youth with disabilities (lindsay, mcdougall, menna-dack, sanford & adams 2015). this review of the literature and policies was set against the above backdrop, which reflects the absence of a plan for youth with disabilities in relation to employment. methods of the literature search the first author of this paper conducted a review of programmes that support the transition of youth with disabilities into competitive employment. her objective was to identify evidence about programmes that are effective and knowledge gaps about youth with disabilities in relation to employment, which could inform future research directions in this field. a further aim was to develop an understanding about local and international disability discourses that might inform increased labour participation opportunities for youth with disabilities. the primary research question that led the review was ‘what knowledge and evidence contribute to the successful transition of youth with disabilities into employment from international and local (south african) perspectives or literature?’ given the need to first focus broadly and then to examine literature and evidence from a local perspective, a systematic approach to an integrative review process was followed (whittemore & knafl 2005), by applying the salsa (search, appraisal, synthesis and analysis) framework (grant & booth 2009). this framework supports flexibility and unique processes rather than adopting a specific literature review type. it was used to conduct an organised review by sourcing and analysing information on the complex and challenging social issue of youth with disabilities and transitions into competitive employment. search the authors acknowledged that different perspectives were needed to identify, analyse and explain how evidence from an international perspective might be used to inform and enhance south african policy, research directions and the application of evidence in practice. the sourcing of diverse types of literature to produce information is consistent with conducting an integrative review of evidence to improve health practices (whittemore & knafl 2005). this approach was thus adopted for the integration of information that might lead to the improvement of employment practices for youth with disabilities. sub-questions were developed and key words identified to guide the search strategies (table 1). these were used to find information from research papers, policy documents and legislation or institutional reports. research databases cinahl, medline, psycinfo, elsevier, wiley online library, sage publications and articlefirst were searched for research papers published from 1990 until march 2016. local and international government, disability organisations and research institutions websites were searched for relevant reports and documents. websites included those of the international labour organisation (ilo), world health organisation (who), disabled people south africa (dpsa), the south african departments of labour, social development, and health, and the human sciences research council (hsrc). the search process resulted in a total of 259 documents being identified, including 164 scientific journal articles, 92 policy documents, acts, organisational reports, and five books or chapters from books. table 1: search strategies and key words. appraisal ninety-nine articles and documents were selected to inform this review, after those that reflected duplication of information, or did not present current evidence, or diverged from the topic of youth with disabilities, or reported on forms of employment not included in this review, were excluded. to establish the fit and relevance of the literature (arksey & o’malley 2005), abstracts or executive summaries were read and key words were highlighted (table 1). next, the potential of the document to contribute information to answer the sub-questions in table 1 was reviewed. synthesis the guiding sub-questions as well as deep reading and reflection upon the documents were used to generate a framework for the extraction and synthesis of information. the framework included the contexts (global and local) and levels of evidence (i.e. macro-economic, policy and operational levels) that organised and supported the extraction of information, and the subsequent integration thereof. the themes in figure 1 were used to obtain information about global and local platforms and to guide an explanation of the implementation of approaches in countries outside south africa, as well as in south africa, on youth with disabilities transitioning into work, and to identify the research that is needed to enhance practice and policy. figure 1: themes used to extract information from literature. analysis an integrative approach was used to interpret and combine the context of system influences with evidence, policy and reports on programme outcomes aimed at achieving employment inclusion of youth with disabilities. a holistic synthesis of the information on each theme was drafted and critically appraised to identify what knowledge is missing, and what research is needed to enhance inclusion and participation of youth with disabilities. recommendations for areas of research that will inform policy and practice were identified. the results of the analysis were shared with two researchers for coherence with the state of knowledge globally (international advisor) and locally (local supervisor). a narrative summary of the findings was produced. youth with disabilities and employment in the world youth with disabilities’ marginal position in terms of employment has been recognised and described by researchers (groce 2004; lindsay, hartman & fellin 2015). youth with disabilities are often unemployed, under-employed or earn less than their non-disabled counterparts (groce 2004). they are often the last to be hired and the first to be retrenched or fired, or hired for jobs that require little training and have few opportunities for development. even when they are well educated, youth with disabilities take longer to find a position, have less job security and less prospect of advancement than their non-disabled peers with similar levels of education (groce 2004). these disadvantages are compounded, with fewer youth with disabilities working or looking for work than non-disabled youth (lindsay, hartman & fellin 2015). youth with disabilities’ outlook for entering into employment is further limited by a basic lack of work and employment preparation. a critical examination of the broad disability and development literature in low-income countries (for example bangladesh, cambodia and kenya) reports that the disadvantages of youth with disabilities in employment start with the denial of opportunities to participate as a child (parnes et al. 2009). access to early, primary and secondary education or life skills and vocational training that are available to other children are routinely refused to children with disabilities. the failing of educational systems to prepare youth with disabilities for the world of work, compounded by and contributing to their lack of skills, gives employers justification for discrimination against this group (roggero et al. 2006). social security systems cause a further restraint to youth with disabilities becoming employed. turton (2001) and roessler (2002) described the discouraging effect of the uk and usa welfare benefit systems to people with disabilities. recipients of benefits consider the risks associated with losing the benefit as too high should they become employed. they further consider the apparent cost of going to work as a deterrent to pursuing employment. engelbrecht and lorenzo (2010) described the same adverse effect of the social security grant, when employment is indeed an option for people with disabilities. the low employment rate of youth with disabilities is further influenced by government policies that are not being implemented, or not being implemented effectively, along with market inefficiencies. the result is an imbalanced and out-of-sync supply and demand dynamic in labour markets (roggero et al. 2006). roulstone suggests that the changing nature of employment, global challenges for disabled workers, and the role of the state and trade unions need to be reconsidered in transforming the global capitalist economy (2002). failing this, current labour markets will remain exclusionary to youth with disabilities, and continue to support a mainstream system of poverty and unemployment (roulstone 2002). neoliberal workfare policies, where economic policy favours a movement from welfare to work, seem to have created tension between person-centred principles and the simultaneous improvement of service efficiencies and accountability. in three developed countries with healthy market economies where workfare policies have become operational, many people with disabilities remained unable to access the support they need to participate fully in the labour market (o’brien & dempsey 2004); this, despite the availability of employment strategies. in finland, for example, sheltered employment1 remains the largest and most common employment option for people with disabilities, even though affirmative businesses are available to transition people with disabilities into real work. sweden has subsidised employment (competitive employment with up to 80% wage subsidy to employers, or a job coach paid by the state), and in both countries, as well as in australia, supported employment2 (se) is available as a work transition strategy. evaluations of the effect of workfare policies on equality in employment participation of people with disabilities have shown only modest success (harris, owen & gould 2012). in the usa, uk and australia, researchers found that an individualised model of citizenship is promoted by these policies that systematically ignore the social, economic and labour market conditions in which individuals seek employment (harris et al. 2012). the model has a further adverse impact on people who already experience high levels of discrimination in free markets, because services can operate selectively and become prone to serve those with a higher likelihood of entering competitive employment. this ‘individualisation of disability’ maintains the marginalisation of people with disabilities, when it is mainly political and organisational forces that create exclusive societies (eide & ingstad 2013:5). literature thus confirms that international attempts at social and economic policy levels to improve the employment situation for youth with disabilities render minimal outcomes at best, and are ineffective at worst. evidence produced at levels where work transition occurs, will subsequently be examined to contribute to this comprehensive review of work transitions and youth with disabilities. evidence about mechanisms for work transition programmes several studies describe the characteristics of programmes that are needed to transition people with disabilities into employment. robinson (2000) and smits (2004) identified collaboration and communication between agencies, having employment for people with disabilities as a shared priority, and service providers, public awareness and involved employers as central factors in employment inclusion. smits, who researched best practice in disability employment in the usa, further found that positive employment outcomes were facilitated at service sites when services were integrated and coordinated with common, customer-driven objectives, and traditional bureaucratic barriers were avoided. at community level, the co-location of staff at employment service centres, and cross-training staff about each other’s roles, builds trust among providers and promotes collaboration. accessibility and state-of-the-art assistive technology further maximises the value of services provided. smits further emphasised the availability of multi-agency expertise to consumers, with shared accountability reinforcing the provision of high quality shared services (2004). another study focused on assisting people with mental illness into employment, found that liaison positions and collaborative teams, staff training on mental health and workforce issues, and multi-level involvement of people with disabilities enhance successful work transitions (boeltzig, timmons & marrone 2008). in american literature, school-to-work programmes were overwhelmingly found to be effective in transitioning youth with disabilities into work. rabren, dunn and chambers (2002) researched predictors of post-school employment for learners with disabilities, agreeing that positive employment outcomes can be expected from high school programmes that engage students in work (i.e. a focus on transition out of school into work). these programmes, (see the youth transition program model, benz, lindstrom & latta 1999; the transition service integration model, luecking & certo 2003; project search, o’day 2009; rutkowski et al. 2006; the transition and customised employment project, rogers et al. 2008; the partnerships for youth initiative, muthumbi 2008 and the youth transition demonstration project, luecking & wittenburg 2009) usually involved collaborative efforts among a number of agencies (e.g. the department of education, state vocational rehabilitation agencies and employers), and interventions spanning the last year of a youth’s secondary schooling until sustainable employment had been secured. other mechanisms that have been found to be viable for transitioning youth with disabilities into employment are micro-enterprises and affirmative businesses. conroy, ferris and irvine (2010) studied micro-enterprises in alabama state (usa) and concluded that participation in employment is promoted for people with intellectual and developmental disabilities through this mechanism. in the usa and uk, affirmative businesses were found to be relevant as employment options for people with disabilities, especially where few competitive employment opportunities are available (easterly & mccallion 2010; secker, dass & grove 2003). literature from industrialised countries overwhelmingly reflects positive employment outcomes for youth with disabilities when specific approaches are implemented at programmatic levels where transition occurs. to conclude this review though, the same or similar evidence from the developing world will now be considered to ascertain what the reality for youth with disabilities in this context may be. evidence of work transitioning efforts in the developing world research from the global south has commented on the very limited success of micro-financing as an employment strategy for people with disabilities. lewis (2004) researched self-employment of women with disabilities in zambia and zimbabwe, when they made use of micro-financing. she concluded that key strategies still need to be put in place to include women with disabilities in finance, in order for micro-financing to be a viable transition strategy. de klerk (2008) also found that this strategy is restricted for people with disabilities in other african countries, india and the middle east, because of stigmatisation and self-exclusion. people with disabilities also do not have prior business experience, and micro-financers are often absent in rural areas (de klerk 2008). nuwagaba and rule (2016) highlighted that people with disabilities in uganda cannot access learning about micro-finance. a south african study, conducted almost 20 years ago, found that home industries,3 as an employment option for people with disabilities in rural areas, were non-viable (uys & phillips 1997). though small businessand institution-based approaches were successful in creating employment, the total number of people with disabilities who became employed was very low and, as such, the cost-effectiveness of the researched approach was questioned (uys & phillips 1997). some research has been conducted with large employers in south africa, finding that employers are willing to employ people with disabilities, if certain conditions are met. wiggett-barnard and swartz (2012) surveyed 26 large south african employers’ perspectives, and found that these employers are more prone to hire people with disabilities in the next 12 months if they had already hired people with disabilities before (z = 5.45; p < 0.05). employers identified the use of specialised recruitment agencies, a targeted recruitment plan, disability awareness training for staff and internships as the best facilitators for the employment of people with disabilities. most participants also indicated that a special budget for accommodation would enhance facilitation of disability-employment. participants valued information on accommodation and the impact of disabilities on job performance, leading the researchers to conclude that better information sharing and understanding can lead to better representation of people with disabilities in the south african labour market (wiggett-barnard & swartz 2012). contrary to employers’ perspectives, marsay (2014) explored the narratives of people with disabilities to identify ways of facilitating employment for them. her participants identified policy, support structures, education and training, individual and societal attitude shifts, self-determination and enabling environments as crucial factors in the transitioning of people with disabilities into the south african labour market. ned and lorenzo (2016) contributed by highlighting the need for capacity development of community-based service providers in rural south africa, to enhance economic inclusion of youth with disabilities. supported employment was identified as a viable strategy for transitioning people with disabilities into work in contexts with limited resources (van niekerk et al. 2015). van nierkerk et al.’s study followed people with mental disabilities over a period of 12 months and tracked their utilisation of supported employment services and employment outcomes for that period. with the south african context in particular having distinguished itself in the available literature, the review progressed by sharply focusing on this local context, and how work transition programmes may be facilitating the participation of youth with disabilities in competitive employment. south africa’s disability employment environment programmes in the public domain in south africa continue to come up short on positive employment outcomes for youth with disabilities, confirming that there is a lack of policy implementation. south africa signed and ratified the united nations convention on the rights of people with disabilities in 2007, pledging to protect the right of people with disabilities to work on an equal basis with others, including the opportunity to gain a living by work that is freely chosen or accepted in a labour market that is open, inclusive and accessible (united nations 2016). the national planning commission also specifically recognises the need for better reflection of people with disabilities in all levels of employment by 2030 (national planning commission 2012). despite having this policy environment that is supportive of youth, south african youth with disabilities navigate poor health and social attitudes in their quest to become employed in addition to lack of skills and availability of jobs (cramm et al. 2013). in terms of policy implementation, there is no evidence available on whether the department of health’s strategy to assist people with disabilities into work, that is, vocational rehabilitation (vr), is effective. health service consumers have access to vr services which include work assessment and preparation, but do not extend to transition into work (coetzee et al. 2011). for schoolgoing youth with disabilities, preparation for the world of work is insufficient, resulting in the low probability of successful transitioning into employment. although the department of education offers a special education curriculum in schools for learners with special educational needs (lsen), vocational training as a channel for work transition is not a focus of this curriculum (steyn & vlachos 2011). as such, career services in special needs education remain very limited. though a number of mechanisms exist to assist youth with disabilities into tertiary education, the scope of this review excluded studies on the section of the disabled south african population who would typically be in a position to utilise such opportunities. the national skills development strategy (nsds), implemented jointly by the department of labour and department of education, performs weakest on its equity targets for people with disabilities (akoojee, gewer & mcgrath 2005). enrolment of people with disabilities in nsds skills development programmes has been extremely low (less than 1%) (hsrc 2009), with no specifics being reported about the enrolment and outcomes for youth with disabilities. the extent to which the nsds has facilitated unemployed people into employment has also been restricted by high levels of poverty and unemployment (kay & fretwell 2003). the national department of public works (ndpw) failed to create employment for youth with disabilities through their expanded public work programme (epwp). the epwp entails the use of public expenditure to promote productive employment and develop marketable skills among historically disadvantaged communities (international labour office 2014). by 2014, between 0.001% and 0.003% people with disabilities had become employed through epwp, despite a target of 2% of 4.5 million people (department of public works & south african cities network 2014). specific information on the number of youth with disabilities was again not reported. though the state is trying to honour its commitment to the united nations convention on the rights of people with disabilities by recognising the plight of youth with disabilities in legislation and policy, implementation of policy in state departments has failed to change the employment situation of youth with disabilities. limitations of the literature review although a number of initiatives exist under the broad-based black economic empowerment act of 2003, and the preferential procurement policy framework act of 2000, the scope of this review excludes self-employment and industry ownership initiatives facilitated by these acts. a separate and growing body of knowledge exists about entrepreneurship as a strategy for people with disabilities to become economically active. tertiary education options and mechanisms to assist youth with disabilities who may have obtained further education after school were also not considered in the scope of this article. this review focused on the largest portion of youth with disabilities who generally would not be able to access further education. specific social issues that may intersect with the concepts of youth and disability were not included in the scope of this review. conclusion because of the lack of enforcement of disability supportive laws and failure to implement related policies, youth with disabilities remain marginalised and excluded from a job market that is saturated with an over-supply of unskilled workers. although south africa’s policy environment supports the right of youth with disabilities to work and highlights access to employment for this group as a priority, youth with disabilities continue to lose out on employment against other designated groups defined by the law. the lack of evidence regarding the employment of youth with disabilities has resulted in a shortfall in the design of measures that will effectively address their employment needs. in the developed world, work transition programmes for youth with disabilities have been met with varying degrees of success through integrated school-to-work approaches. this appraisal of the international literature concluded though that the majority of reported studies were focused on disability employment in general, with less attention to youth with disabilities. in developing countries, available research on employment outcomes for this sub-group is even more limited or altogether absent. efforts to assist youth with disabilities into employment will continue to be inadequate, if specific evidence-based transitioning methods and avenues are not identified and researched. research of policy implementation becomes all the more important when evidence can inform the development of effective delivery mechanisms of work transition for youth with disabilities. the redress of past and current injustices in the employment of youth with disabilities shall ultimately have a positive influence on the unemployment rate of this group. it is well known that the financial reward from participating in work is only one of a range of benefits to the worker, including social contacts and support, and the structuring of time (boland & griffin 2015; van niekerk 2009; webster & omar 2003). in the absence of effective mechanisms to transition youth with disabilities into employment, these health-giving elements of work remain exclusive to those without disabilities, and youth with disabilities stay on the margins of society, unable to participate. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.e. is the researcher and phd student. l.v.n. and l.s. are her phd promoters who have informed the review and research through guidance and feedback. references akoojee, s., gewer, a. & mcgrath, s., 2005, ‘south africa: skills development as a tool for social and economic development’, in s. akoojee, a. gewer & s. mcgrath (eds.), vocational education and training in southern africa, pp. 99–117, hsrc press, south africa. arksey, h. & o’malley, l., 2005, ‘scoping studies: towards a methodological framework’, international journal of social research methodology 8(1), 19–32. https://doi.org/10.1080/1364557032000119616 benz, m., lindstrom, t. & latta, t., 1999, ‘improving collaboration 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wiggett-barnard, c. & swartz, l., 2012, ‘what facilitates the entry of persons with disabilities into south african companies?’ disability and rehabilitation 34(12), 1016–1023. https://doi.org/10.3109/09638288.2011.631679 footnotes 1. sheltered employment refers to segregated work programmes for people with disabilities who are not able to work in a competitive employment setting (krainski 2013). 2. supported employment is an employment strategy that facilitates people with severe disabilities into competitive employment (wehman et al. 1991). 3. industries where workers performed piecework at their homes for local businesses. abstract introduction methodology results discussion acknowledgements references about the author(s) melanie a. gow department of educational psychology, stellenbosch university, cape town, south africa yvonne mostert department of educational psychology, stellenbosch university, cape town, south africa lorna dreyer department of educational psychology, stellenbosch university, cape town, south africa citation gow, m.a., mostert, y. & dreyer, l., 2020, ‘the promise of equal education not kept: specific learning disabilities – the invisible disability’, african journal of disability 9(0), a647. https://doi.org/10.4102/ajod.v9i0.647 original research the promise of equal education not kept: specific learning disabilities – the invisible disability melanie a. gow, yvonne mostert, lorna dreyer received: 06 may 2019; accepted: 18 dec. 2019; published: 26 feb. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: this research is part of a larger project on the exploration of inequalities in south african higher education. this current study focussed on the implementation of policies to eradicate inequalities in an inclusive education system. objectives: this article aimed to establish the implementation of policy by researching the lived experiences of students with specific learning disabilities (slds) studying in the university. method: a qualitative, systematic review was employed as the research methodology. original peer-reviewed qualitative studies published between 1994 and 2017 were systematically reviewed. the preferred reporting items for systematic reviews and meta-analyses (prisma) was used to ensure rigorous reviews. the critical appraisal skills programme (casp) was used to guide the process of critical appraisal of the selected articles which resulted in a total of 10 articles being selected for reviewing. the target population of this research comprised undergraduate students diagnosed with sld. semi-structured interviews were the main data collection tools used in the studies that were reviewed. data from the selected articles were extracted and synthesised. results: the dominant themes that emerged from the review were: (1) fear of stigmatisation; (2) gaps in policy implementation; (3) experiences vary across departments; and (4) self-determination and family support as success factors. conclusion: an important aspect in the transformation of higher education institution is to ensure the closing of the disjuncture between policy and implementation in support of students with sld. keywords: specific learning disabilities; higher education; inclusive education; prisma; transformation; equality. introduction the creation of a democratic society in which social structures promote unity in diversity in pursuit of transformation in south africa is inextricably linked to the debate on inclusive education. various operational guidelines for the transformation of universities and the promotion of social inclusion have been developed since 1994. against the backdrop of a demised apartheid-framed education system, it is not surprising that the focus of transformation in higher education is on increasing access to and participation of black students as compared to former whites-only institutions. the drive and efforts to transform universities in south africa are thus mainly focussed on increasing racial equality through incentives such as the national student financial aid scheme (nsfas) to support students who come from disadvantaged and impoverished backgrounds (department of higher education and training [dhet] 1999). the rationale for this funding mechanism is to increase access to higher education and meet ‘equity, growth and quality targets’, as aspired to in the white paper on higher education and training (dhet 2013:8) and the national development plan (the presidency, 2011:325). within the south african context, the department of education (doe) uses the broad concept of ‘barriers’ to learning within a single inclusive education system (doe 2001:6). barriers to learning refer to a range of factors, including disability, which impede on access to and participation in educational institutions (doe 2001). however, although there is a rich body of research on experiences of students with disabilities in higher education, it is not afforded the same level of significance as diversifying the racial profile of access to universities in south africa. conversely, universities do have policies to support students with disabilities who enter higher education. the focus, though, is on physical accessibility of buildings for students with physical disabilities, while special attention, such as extra writing time during tests and examinations, is also awarded to accommodate and support students with special needs (dreyer 2011). as a subproject on the exploration of inequalities in south african higher education, this qualitative systematic review (qsr) focussed on the lived experiences of students with specific learning disabilities (slds), with a focus on access and participation in the university. the review included literature published from 1994 to 2017. the research question that guided this research was: what are the transition experiences of undergraduate students with slds when moving from high school to higher education? transforming higher education the education ministry (doe 1997) envisioned a transformed and democratic higher education system, which will: [p]romote equity of access and fair chances of success to all who are seeking to realise their potential through higher education, while eradicating all forms of unfair discrimination and advancing redress for past inequalities. (section 1.14) not surprisingly, the first point on the transformation agenda in education white paper 3 (doe 1997) is to increase and broaden participation of all marginalised groups. central to the doe’s argument, therefore, is the emphasis on successful policy implementation to overcome the legacy of fragmentation, discrimination and inadequacy (section 1.13). the doe’s vision is to: [i]ncrease access for black [people], women, disabled and mature students, and generate new curricula and flexible models of learning and teaching, including modes of delivery, to accommodate a larger and more diverse student population. (doe, 1997: section 1.13) aligned with the vision to increase and broaden educational access and participation, education white paper 6 (doe 2001) presents a framework for establishing such an inclusive education system with the emphasis on special needs education. white paper 6 embraces inclusive education as part of the broader social reform of the south african education system. it builds on the bill of rights in which the democratic values of human dignity and equality regardless of race, ethnicity, gender, disability and religion are enshrined. the national development plan (2011) and higher education policies such as white paper 3 (doe 1997) make further attempts to realise this transformation agenda. with a focus on equity, quality and access, south africa embraces the notion of education for all (efa) (unesco 2007) in its overall social, political and economic transformation initiatives. concurring with this is pantić and florian’s (2015) assertion that inclusive education is concerned with improving the quality of mainstream education and reducing the disparities in its achievement outcomes. at an international level, there is also an increasingly strong drive to widen access to higher education institutions (heis). this drive is backed by a strong political agenda to decrease social marginalisation and social inequality with ‘appropriate legislation that is designed to ensure non-prejudiced practice within higher education institutions’ (kendall 2016:3). sound policies and guiding documents for implementation are, however, only a starting point to the transformation process and may provide the impetus for change to which the society reacts. according to ebo (2016), the move towards inclusive education brought about an increase in students with disabilities enrolling in universities internationally. higher education institutions needed to embrace and accept students with disabilities in the academic space, and the need to make buildings more accessible to, for example, wheelchairs and the other more visible disabilities was highlighted. however, slds result in less visible barriers to learning and has motivated universities to develop policies for the support of students with special learning needs. specific learning disabilities the diagnostic and statistical manual of mental disorders, fifth edition (dsm-5) (american psychiatric association [apa] 2013) provides definitions for and classifies mental disorders for use in diagnosis and treatment. according to dsm-5, sld is a neurodevelopmental disorder that is ‘diagnosed when there are specific deficits in an individual’s ability to perceive or process information efficiently and accurately’ (apa 2013:32). specific learning disability therefore affects one or more of the basic cognitive processes required for understanding or use of spoken or written language. the disorder may manifest itself in an inadequate ability to ‘listen, think, speak, read, write, and spell or to do mathematical calculations’ (apa 2013:32). specific learning disability therefore impedes someone’s ability to learn or use specific academic skills that form the foundation for other academic learning. such difficulties can have a long-term impact on a person’s ability to function in everyday life, particularly in academia that involves activities and mastery with numbers, written words and written expression (apa 2013). it must be noted that the apa uses the medical term ‘specific learning disorder’ for diagnosis. the term ‘learning disability’ is, however, commonly used in educational and legal systems. although learning disability is not exactly synonymous with a specific learning disorder, someone with a diagnosis of specific learning disorder can expect to meet the criteria for a learning disability and have the legal status of a person with a recognised disability to qualify for accommodations and services in academic institutions (apa n.d.). according to the learning disability association of america (lda) (n.d.), people who present with learning disabilities are generally of average or above average intelligence. however, there seems to be a gap between the person’s potential and actual accomplishment. because there are no visible indications of a disability, slds are often referred to as ‘hidden’ or ‘invisible’ disabilities. the lda classifies the following conditions as sld: auditory-processing disorder dyscalculia dysgraphia dyslexia language-processing disorder non-verbal learning disabilities visual perceptual or visual motor deficit. other related disorders include attention deficit hyperactivity disorder, dyspraxia, and executive dysfunction and memory disorder. however, the lda cautions not to confuse learning disabilities with learning problems. learning problems primarily result from visual, hearing or motor handicaps; intellectual disability; emotional disturbance; or environmental, cultural or economic disadvantages. barriers to participation the united nations convention on the rights of persons with disability (uncrpd) article 24 states that persons with disabilities should be guaranteed the right to inclusive education at all levels, regardless of age, without discrimination and on the basis of equal opportunity (united nations [un] 2008:16). as a neurodevelopmental disorder, sld is caused by intrinsic factors associated with the medical discourse on disabilities (un 2008). although there is an international move away from a medical perspective of viewing disabilities, the authors contend that biological and thus medical factors can be responsible for creating barriers to learning and participation. however, these barriers may be exacerbated by society and institutional systems. therefore, from a social model perspective of disabilities, it is posited that social, environmental and attitudinal barriers can be incapacitating (kendall 2016). the social model furthermore states that society’s response to the presence of an impairment imposes a disability upon the person. it is thus imperative that educational institutions, more specifically universities, find ways to negate the negative impact of such societal barriers on students with sld. promoting inclusion of students with sld at universities is a complex issue. research has indicated that social inclusion (formal access to university) does not automatically equate to epistemological access for students with sld (dreyer 2017; morrow 2007). there are several barriers that limit access to the knowledge imparted in lecture halls at the university. these barriers can be systemic as well as pedagogical. at a systemic level, barriers are increasingly being addressed through policy development. practical implementation of policy can overcome systemic barriers by driving programme adjustments to support students in meeting academic requirements (mercer & mercer 1998). a focus on pedagogy, referring to the methodologies and practices used in teaching, implies that adjustments within the teaching space can help overcome barriers to epistemological access. these adjustments generally include (1) extended time to complete the programme, (2) course substitution, (3) modification or waiver of a foreign language requirement, (4) part-time study and (5) extended time for tests. however, such adjustments tend to be generic and put most of the onus on the individuals who have to declare their disability to the university. as slds are invisible, such declarations are required to be supported by psychological assessments (couzensa et al. 2015:25). with the move towards inclusive education and inclusive teaching practices (pedagogy that allow for epistemological access), the focus is less on how to get the individual to fit into the system but rather on employing inclusive pedagogy to teach all. while much has been written about inclusive pedagogical practices at the school level, there is limited literature on the topic in relation to higher education. morrow (2007) used the concept of ‘epistemological access’ (p. 18) to refer to the accessibility of various forms of knowledge imparted at learning institutions. institutional barriers, for example, negative attitudes or a disabling educational environment, may impede access to learning in a higher education educational setting for students with an sld (ryan 2007). recently, researchers have shown that universities are developing policies to establish support services. however, while student support services within universities are generally regarded positively, the support plans are considered useful but ‘generic’ and do not consider individual differences (kendall 2016). at the school level in south africa, as in many countries worldwide, inclusive education is supported by policies for identification and support (burr et al. 2015; department of basic education 2014). south africa has recently adopted the screening, identification, assessment and support (sias) strategy to be implemented in all schools from 2017 (department of basic education 2014). the strategy enables early identification of barriers to learning in order to provide appropriate support to learners. currently, universities in south africa do not have a similar policy to continue the recognised provision of support. the research question that guided this qsr was therefore: what are the transitioning experiences of undergraduate students with sld moving to higher education? the question was formulated with the specific aim to review literature on the experiences of undergraduate students with slds as they transitioned to higher education. methodology according to vergnes et al. (2010), a qualitative ‘systematic review of the literature is the scientific way of synthesising a plethora of information, by exhaustively searching out and objectively analysing the studies dealing with a given issue’ (p. 771). there has been an increase in qsrs in the field of education (andrews 2004). according to bearman et al. (2012:625), qsrs provide a clear, well-organised and thorough approach to a literature review and the synthesis of the research findings. a qsr is a research methodology used to review, evaluate and synthesise existing research to answer a research question. for this qsr, the guidelines presented by the preferred reporting items for systematic reviews and meta-analyses (prisma) were used to ensure rigorous reviews (moher et al. 2009b). the 27 items proposed by prisma are subdivided into the title (1), abstract (2), introduction (3 and 4), methods (5–16), results (17–23), discussion (24–26) and funding (27). each item is accompanied by a description as a checklist item. in addition, the prisma flow diagram (moher et al. 2009a) was used to guide this review process. this qsr reviewed original, peer-reviewed, qualitative studies published from 1994 to 2017 that focussed on the experiences of undergraduate students with sld. this period was selected as 1994 marked a significant year in south african history, namely, the dawn of a democratic political dispensation with an emphasis on transformation of educational institutions and a specific focus on access for all. research articles from this period were included to investigate inclusive practices and how students experienced it over the last two decades. search strategy the literature search was conducted during july and august 2017. the following keywords were used in the search of databases listed for educational psychology and curriculum studies on the stellenbosch university library guides site: sld; higher education; undergraduate experiences; transition to university; accommodations for sld; and physical access and curriculum access. only english language articles were included in the search. the search was conducted on four different databases. the initial search yielded 974 possible articles. additional filters (time frame: 1994–2017; peer-reviewed and qualitative research) were added to narrow the search, and the databases yielded the following results: eric: 71 articles proquest: 78 articles google scholar: 23 articles sage journals: five articles after the additional filters were applied, the search yielded a total number of 177 articles. in the second phase of the search, the articles were screened by title, and duplicates were excluded (n = 55). the next phase was focussed on screening abstracts for eligibility to be included. screening criteria included the target groups, time frames, type of study and text selection (4t’s) to be consistent with the research question and focus of this study. a final number of 20 studies were selected to be included in the review. methodological quality appraisal during the fourth phase of selection, the full texts of the 20 selected studies were assessed for methodological quality with the use of the critical appraisal skills programme (casp uk n.d.). the full-text articles were reviewed and assessed by two independent reviewers to determine whether the article adequately met the criteria for inclusion in the qsr. the 10 questions in the casp qualitative check list are designed to help researchers systematically read the full texts while considering three broad questions: are the results of the study valid? was there a clear statement of the aims of the research? is a qualitative methodology appropriate? was the research design appropriate to address the aims of the research? was the recruitment strategy appropriate to the aims of the research? were the data collected in a way that addressed the research issue? has the relationship between the researcher and participants been adequately considered? what are the results? have ethical issues been taken into consideration? was the data analysis sufficiently rigorous? is there a clear statement of findings? will the results help locally? how valuable is the research? these questions supported the rigour of a critical appraisal of the selected articles. if all the answers to the questions for an article were yes, the article scored 100%. during the methodological quality appraisal, articles with a score of 0–79 were excluded and those with a score of 80–100 were included. a total of 10 articles were selected to be reviewed. the scores obtained for each of the included articles are indicated in the data extraction table (table 1). the process followed in this qsr is presented in figure 1. figure 1: preferred reporting items for systematic reviews and meta-analyses flow diagramme. table 1: data extraction table. ethical considerations ethical clearance has been received for the larger project. this qualitative literature review does not require ethical clearance. however, it adhered to ethical considerations stated in the article (ethical clearance number: efec 1-6/2017). this article reports on a qsr and thus constitutes meta-research. however, vergnes et al. (2010) cautioned against ignoring ethical considerations or at least to avoid the risks associated with systematic reviews such as including studies that do not respect ethical principles. ethical considerations for this meta-research meant that all the studies included reported voluntary participation. they also report on receiving informed consent from participants, and pseudonyms were used to protect the identities of participants. however, it must be noted that some of the original articles included may have had ethical transgressions as not all reported explicitly that they received institutional permission to conduct the research. permission was only implied by stating ethical considerations observed. data extraction comprehensive data extraction (higgins & green 2011) was conducted by identifying and describing five general descriptors in each of the selected articles. the descriptors were title, data collection, target group, country of research, aims of the study and the findings. the descriptors of each article are presented in table 1. at this stage, it is important to note that although the literature search yielded literature on access of students with disabilities from south african studies, none focussed on the experiences of students with learning disabilities and were thus not included in this report. data synthesis the findings from the articles reviewed were summarised and presented in a narrative form. qualitative content analysis (creswell 2014) was used to inform data synthesis. in conducting the synthesis, the authors were cognisant of the inclusion criteria and the research question that guided this study. using an inductive approach, patterns in the data were identified by means of thematic codes (creswell 2014; patton 2002). we identified the themes recurring throughout the reviewed literature. these were then described and listed. the dominant themes that emerged with regard to experiences of students with sld during transition from high school into higher education included: fear of stigmatisation gaps in policy implementation variation of experiences across departments in the same heis self-determination and family support as success factors. results description of the studies after the screening and methodological quality appraisal process, only 10 articles were included in the final review. all selected articles underwent the same processes of filtration, screening and appraisal with regard to the relevance of their titles and abstracts to the research question. the qualifying articles were authored in the following countries: the united states of america, the united kingdom, australia and the czech republic. the majority of studies (n = 4) were conducted in the united states of america. semi-structured interviews were the main data collection method used across studies. the participants in all studies were undergraduate students who had some form of sld. all articles reported on small-scale studies that focussed in depth on the lived experiences of students with learning disabilities and their transition from high school to higher education. the main focus of articles was on access and inclusion into heis. the dominant themes that emerged are listed under data synthesis above, and are discussed further. theme 1: fear of stigmatisation the experience of being misunderstood by lecturers and the feelings of guilt for requesting support, resulted in many students with sld not disclosing their disability and their need for support. negative self-perceptions, along with the reluctance of lecturers to recognise and support students with sld through inclusive practices, were dominant experiences of students, and students generally experienced stigmatisation because of the disability. consequently, many students did not feel comfortable revealing their learning disability to the lecturers. theme 2: gaps in policy implementation the reviewed studies indicated that the heis have inclusion policies in place. however, the general experience amongst students was that heis have not embraced (or yet understood) inclusion and are not meeting the diverse needs of their students. as a consequence, most students reported experiences of insufficient support or lack of support in the transition from high school to higher education. many students also felt that the lecturers were not informed or equipped to support their needs, resulting in the students not feeling included. strnadová et al. (2015:1092) concluded that lecturers and higher education staff should be trained further on supporting diversity. according to the reviewed literature, students with sld experience several barriers to academic access and participation. lectures and administrative staff are, for example, not well-prepared to accept students with sld. consequently, students experienced that their particular needs were not met and that they did not have equal access to the curriculum, which limited their participation in learning. the following verbatim report by jackie is representative of some students’ experiences at university (ryan 2007): i thought uni was going to be so good, [but] it was just a horror semester. i hated it. i did well, i got good marks, but it had nothing to do with the university, it was a statement about my application. (p. 439) most studies in this review revealed that the standardised teaching practices in universities do not acknowledge diversity or promote inclusivity and as such restrict academic access and participation. students feel disempowered within the lecturer–student relationship and experience that they do not have a voice and are not being accommodated. in kendall’s (2016) research, grace voiced her experience as follows: sometimes when you ask for an extension, they are a bit begrudging and ask you, do you really need one? i wouldn’t be asking if i didn’t! it’s so annoying. (p. 8) it further seemed that most lecturers attributed the difficulties that students experienced as arising solely from within the individual (a medical perspective) and did not see that their lecturing practices can have an impact as well. students felt that the policies and support provided for slds were tailored to serve the institution rather than the student. furthermore, in their experience, barriers to access academia were exacerbated by a lack of resources within the institution. theme 3: experiences vary across departments findings indicate that the experiences of students vary across departments in the same hei, manifesting in different levels of inclusion. some students experienced inflexibility and lack of resources for ensuring access. kendall (2016) quoted a student’s experience when she asked the lecturer to provide lecture material before the class to help her make notes in class: he said that he couldn’t do that because he had done that in the past and when people got the reading material, they didn’t turn up for the lecture! i should really have made a stand about it but i didn’t have the energy to argue. (p. 6) some students reported experiencing negative attitudes from lecturers towards them. while everybody did not experience negativity, the students reported inconsistent experiences across departments and with individual lectures. theme 4: self-determination and family support as success factors self-determination has been associated with many positive results in students with sld. students acknowledged that their own tenacity and determination as well as their own knowledge regarding their disability and needs had been key factors in their success. students were generally of the opinion that that their biggest support sources were family and friends. they felt that the lecturers misunderstood them, or made them feel guilty for asking for support. most of the students relied on their peer group and family for support and did not seek the support that the higher institutions offered, as this support was experienced as inflexible. discussion globally, there is a strong focus on inclusion as a means of widening access to education to overcome a history of fragmentation, inequality and inadequacy. the culmination of social and academic events on inclusion led to widespread acceptance of policies to ensure equal access to quality education. researchers argue that there is ample evidence to support a statement that students with slds are enrolling in universities at an increasing rate (couzensa et al. 2015; ebo 2016; kendall 2016). the promotion of inclusive practices in educational settings is increasingly gaining momentum and is supported and encouraged through several initiatives from the un. early identification of and support for learning barriers are given priority in basic education in south africa through the implementation of the sias strategy. unfortunately, although there is an established body of literature on physical and sensory disabilities in south african hei’s, none could be found for sld during the search process used in this article. however, from the findings of this study, it is clear that at an international level, heis struggle to implement policies that are geared towards increasing inclusion. although, much success is reported regarding the support of students with physical and sensory disabilities, they tend to lag behind in terms of providing support for students with sld. while barriers were identified by teachers in the basic education system, university-level policy requires students to disclose their disability in order to gain access to the support provided. this review found that students with sld tend to refrain from disclosing their disability for fear of being stigmatised. participants in the studies indicated that they fear negative perceptions from lecturers. this finding is corroborated by literature in that slds are not visible in the same way that sensory and physical disabilities are, and that students then have to prove the need for support by submitting an assessment report from a psychologist (couzensa et al. 2015:25). their fear of stigmatisation also seems to be confirmed when students experience reluctance from lecturers to recognise and support sld through inclusive practices in class. while universities have adopted disability supportive policies, this study shows that students with sld still do not enjoy the same support as their physical and sensory disabled counterparts. the themes that emanated from this research show that university students with sld are largely on their own with regard to coping with the academic demands of tertiary education. this seems to be true even against the backdrop of students having received support at the school level (ryan 2007). the deduction can be made that policy implementation in the form of academic support in schools far outweighs support for students with sld at the university. the current gap between policy on pedagogical inclusive practice and implementation in the higher education system seems to result in failing students who have the right to equal access to quality education. the findings further show that students with sld find it difficult to access sources of support. the inconsistency in how departments at the same university support students with sld confirms the existence of a gap between institutional policies and implementation. however, it might also be possible that there is no uniform interpretation of policy amongst lecturing and administrative staff. a grave concern is that findings from the literature show that lecturers at the university have not adapted their own pedagogy in pursuit of inclusive education. the assumption that some lecturers persistently exclude students who are diagnosed with sld through traditional lecturing styles is based on student experiences reported here. this traditional ‘one-size-fits-all’ approach tends to create barriers to knowledge for students with sld. a ‘one-size-fits-all’ approach is further exacerbated by the disparate power relationship between lecturers and students, which leaves students with sld feeling disempowered and voiceless. the students’ situation of powerlessness is compounded by the finding that students feel that the policies are developed to favour the institution and not those who need it. it is interesting to note that because of the reported lack of resources and inflexible pedagogical practices, students tend to rely heavily on family and friends for emotional and other support. according to the literature reviewed here, support provided at universities is experienced as inflexible and does not adequately serve their specific individual needs. therefore, students with sld rely on their peers for specific support; for example, as quoted in one of the reviewed studies (couzensa et al. 2015): i found in the past year that the most successful strategy is becoming part of a study group … we give each other deadlines … we set up a reading schedule…you know that everyone else in the group is expecting your … summary of that chapter … that keeps you moving. (p. 33) ultimately, students declare that it is their own determination to succeed in spite of the barriers they experience that contributes to their success. their tenacity and determination as well as their own knowledge of their disability and needs had been a key factor in their success. the challenge to make specific learning disability visible the themes that emerged from this study indicate that efforts to offer and ensure equal opportunities and access for all remain a fundamental concern in higher education today. students currently enrolled at university experience insufficient support in relation to what the basic education system provides. the invisibility of sld has been described as detrimental to students’ success in higher education. internationally, several policies, declarations and policy implementation guidelines transpired with the central theme of inclusion and participation as essential to human dignity and the enjoyment and exercising of human rights. such policies have given impetus to move away from a medical/deficit view of disability to viewing education as a human rights and social justice issue (kendall 2016). however, sld is not an overt and easily understood disability. according to university policy, students are required to undergo assessments and then disclose the disability in order to gain access to and enjoy the support provided by universities’ disability units. universities thus need to be proactive on several levels in order to make sld visible. the findings of this review indicate that universities do have policies on inclusion of students with disabilities, including students with sld. however, slds tend to be given less prominence than visible disabilities. this results in the needs of students with slds remaining undetected or undisclosed and thus ‘ignored’. a paramount problem seems to be the lack of policy implementation. implementation is compromised by interpretation of the policies when departments at the same institution have varying attitudes and support in place. one way of making sld visible is by promoting awareness amongst the lecturing staff and support services. this can be done through several awareness and training initiatives that are geared towards inclusive practices in the institution as a whole. teacher training programmes are increasingly preparing student teachers to be able to teach in inclusive schools and to be responsive, pedagogically and socially, to the needs of all (burr et al. 2015). when students with sld enter university, they expect the same acknowledgement of sld they experienced in school, only to be disillusioned by the pedagogical inflexibility of the university lecturers. this inflexible ‘one-size-fits-all’ pedagogical approach that most university lecturers still practice needs to be challenged. this can be done through in-service training on how to be pedagogically responsive to the needs of all the students in the class. training at faculty and departmental levels can contribute to practices of implementation that acknowledge sld, consequently making it more visible. conclusion the international drive to promote inclusive quality efa is currently showing results in the form of policy implementation, particularly at the level of basic education. by addressing the pedagogical needs of students with slds at the school level, heis experience an increase in students with sld. this increase in the enrolment of students with sld in universities necessitates continued support in order for them to be successful in their studies. there is ample evidence that universities have been implementing policies to ensure safe and equal access to those who have physical and sensory disabilities. this qsr has indicated that students with sld undergoing higher education experience the effects of a disjuncture between policy and practices. the inflexible pedagogical practices of lecturers seem to be a major contributor to this disjuncture. upon reflection, it is interesting to note that the articles by greenbaum, graham and schales (1995), and by stage and milne (1996), which were published in the era of awareness campaigns and policy-making, revealed similar student experiences across the themes. on the other hand, more recent articles reflected greater diversity of student experiences. the most obvious differences are found in the students’ recommendations. at the time when these articles were published, access to higher education for students with learning disabilities was less likely than that of their peers (forlin & chambers 2017:556). the universities were not attempting to provide access and support to students with disabilities. research recommendations thus focussed on improving access to information for lecturers and staff in higher education. it is of interest to the authors that in recent articles, more students with learning disabilities are attending heis and information on learning disabilities and inclusion is more readily available, yet pedagogical practices within institutions have not adapted to this new reality. in the pursuit of overcoming historically determined patterns of fragmentation, inequality and inefficiency, sld needs to be acknowledged and students must be supported. it is concluded that universities need to make slds visible by ensuring sound implementation of policies at all levels of the institution. the emphasis should, however, be on providing support and training for lecturing staff to enable them to provide meaningful access to the knowledge and skills they wish to impart in lectures through pedagogically responsive practices. it is concluded that transformation in higher education towards support and the provision of epistemological access to all students remain imperative. inequalities need to be addressed through ensuring policy implementation within the teaching and learning spaces. specific learning disabilities need to become visible and accepted as a disability in universities if they are to be inclusive centres of excellence for all. acknowledgements although no funding was received for this part of the project, it is acknowledged that the study is part of a larger national research foundation-funded project with the title, a multi-dimensional and integrated exploration of inequalities in south african higher education: effects on students. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions dr l.d. was the project leader and was responsible for the project design. m.g. and y.m. were responsible for data collection and analysis, with support from l.d. who made conceptual contributions. m.g. and y.m. wrote the initial findings. l.d. took the lead in writing the article while m.g. and y.m. co-wrote the manuscript. funding information no direct funding from the nrf project was received for this 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vergnes, j.n., marchal-sixou, c., nabet, c., maret, d. & hamel, o., 2010, ‘ethics in systematic reviews’, journal medical ethics 36(12), 771–774. https://doi.org/10.1136/jme.2010.039941 abstract introduction research methods and design results discussion conclusions acknowledgements references appendix 1 footnotes about the author(s) anne kumurenzi department of rehabilitation sciences, faculty of health sciences, mcmaster university, hamilton, canada department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda julie richardson department of rehabilitation sciences, faculty of health sciences, mcmaster university, hamilton, canada lehana thabane department of health research methods, evidence, and impact, faculty of health sciences, mcmaster university, hamilton, canada population health research institute, mcmaster university, hamilton, canada jeanne kagwiza department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda ines musabyemariya functional rehabilitation programme, humanity and inclusion, kigali, rwanda jackie bosch department of rehabilitation sciences, faculty of health sciences, mcmaster university, hamilton, canada population health research institute, mcmaster university, hamilton, canada citation kumurenzi, a., richardson, j., thabane, l., kagwiza, j., musabyemariya, i. & bosch, j., 2022, ‘provision and use of physical rehabilitation services for adults with disabilities in rwanda: a descriptive study’, african journal of disability 11(0), a1004. https://doi.org/10.4102/ajod.v11i0.1004 research project registration: project number: 00001973 original research provision and use of physical rehabilitation services for adults with disabilities in rwanda: a descriptive study anne kumurenzi, julie richardson, lehana thabane, jeanne kagwiza, ines musabyemariya, jackie bosch received: 31 dec. 2021; accepted: 04 may 2022; published: 30 aug. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: physical rehabilitation interventions address functional deficits caused by impairments that affect someone’s performance. whilst rehabilitation is important, it is assumed that these services are either minimal or nonexistent in low-resource settings. our data expand on the data from the situation assessment of rehabilitation in the republic of rwanda report to describe rehabilitation services and who access them at public and semiprivate facilities (primarily funded by the private sector). objectives: this article describes the use of the outpatient physical rehabilitation services across nine health facilities, the characteristics of adults attending these health facilities and some of the facilitators and barriers they encounter when attending rehabilitation. method: data were collected between september and december 2018 from the heads of departments and adult patients attending outpatient rehabilitation services funded by the government, international nongovernmental organisations or faith-based organisations. results: two hundred and thirteen adults were recruited from nine facilities. there is a sixfold difference in the number of rehabilitation personnel between public and semiprivate hospitals in these facilities’ catchment areas. however, most participants were recruited at public facilities (186 [87%]), primarily with physical disorders. patients reported that family support (94%) was the most crucial facilitator for attending rehabilitation, whilst transportation cost (96%) was a significant barrier. conclusion: rehabilitation service availability for rwandan adults with disabilities is limited. whilst family support helps patients attend rehabilitation, transportation costs remain a significant barrier to people attending rehabilitation. strategies to address these issues include developing triage protocols, training community health workers and families. contribution: data on rehabilitation service provision in rwanda and most african countries are either non-existent or very limited. these data contain important information regarding the services provided and the people who used them across different health facilities (public versus private) and urban versus rural settings). to improve rehabilitation service provision, we first need to understand the current situation. these data are an important step to better understanding rehabilitation in rwanda. keywords: adults; disabilities; physical rehabilitation; outpatient services; health facilities; descriptive study; rwanda introduction adult physical functioning is affected by a variety of health conditions, such as noncommunicable diseases (ncds) or injuries (manini 2012). noncommunicable diseases are increasing in prevalence worldwide and particularly in lowand middle-income countries (gimigliano & negrini 2017; world health organization [who] 2017). despite the growing burden of physical disabilities in lowand middle-income countries (jesus, landry & hoenig 2019; jesus et al. 2021), which more than doubled from 1990 to 2017 in low-income countries (jesus et al. 2019), the provision of rehabilitation is limited in many lowand middle-income countries (bright, wallace & kuper 2018). physical rehabilitation interventions optimise function and minimise physical disability for those whose physical impairments affect performance (bowker et al. 2006, 2011, 2017), with the intent to equip people to live to their maximum potential and optimise their contribution to family, community and society (wade 2020; bowker et al. 2006). in high-income countries, physical rehabilitation is usually provided by credentialed, skilled health professionals, such as but not limited to rehabilitation physicians, psychologists, physiotherapist (pts), occupational therapist (ots), speech and language therapists (slts), prosthetists and orthotists (p&os) and nurses. despite the importance of these services, the demand for these services in many lowand middle-income countries exceeds their human resources, leading to continued poor functional outcomes (bright et al. 2018; jesus et al. 2019; jesus et al. 2021; prynn & kuper 2019). as a result, the demand for these services exceeds the resources (bright & kuper 2018; bright et al. 2018; prynn & kuper 2019), leading to continued poor functional outcomes. in response to the growing need for rehabilitation, in 2017, the world health organization (who) launched the rehabilitation 2030 initiative. this initiative brought together an international group of key stakeholders in rehabilitation service provision to develop strategies and action plans to provide quality and timely rehabilitation worldwide, particularly in lowand middle-income countries with limited rehabilitation services and the greatest need (gimigliano & negrini 2017). these countries were urged to collect data on rehabilitation needs and services and the accessibility and availability of services to guide the efficient implementation of quality services (who 2017). evidence on disability and rehabilitation data is an important first step in understanding the needs and gaps in rehabilitation service provision to develop efficient solutions (gimigliano & negrini 2017; who 2014). rwanda is a low-income country in central east africa with 13.4 million people, which has been projected to increase to 16.9 million by 2023. life expectancy is 70 years for women and 66 years for men (vollset et al. 2020). according to a 2012 census, 5% of rwandans aged 5 years or older have a disability, in which 80% of those with a disability are 18 years or older, almost 90% live in rural settings and 25% report mobility limitations (walking or climbing) (national institute of statistics of rwanda & ministry of finance and economic planning-rwanda 2014). in a more recent 2019–2020 survey, 14% of rwandans aged 5 years or older reported at least one functional limitation, in which 69% of those with a functional limitation are 18 years or older (national institute of statistics of rwanda kigali, rwanda ministry of health kigali, rwanda & the dhs program icf 2021). therefore, the number of adults in rwanda with disabilities seems to be increasing. rwandan disability rates are similar to estimates from other african countries (e.g., 7.5% in south africa in 2011) (statistics south africa 2014), but much lower than the westernised rates (e.g., 22.0% in canada in 2017) (morris et al. 2018). whilst both the rwandan and south african estimates indicate there are fewer persons with disabilities, it is likely that both these estimates are inaccurate. there is a greater stigma associated with disability in african countries (loeb 2013; m’kumbuzi et al. 2014); therefore, persons with disabilities may be reluctant to self-identify themselves as having a disability (loeb 2013). with increasing life expectancy and prevalence of ncds in rwanda, it is quite possible that actual prevalence rates for disability are at least as high as western countries (alleyne et al. 2013; asiimwe-kateera et al. 2015; tapela et al. 2015). in 2007, rwanda put in effect law no. 01/2007 of 20 january 2007 relating to the protection of persons with disabilities, with the intent of creating more inclusivity for person with disability (rwandan ministry of justice 2009). however, the law was based on a medical model of disability, limiting the understanding of disability to the issues associated with the person and ignoring the role of structures (e.g., environment, systems). in 2021, the ministry of local government issued the national policy of persons with disability and four years strategic plan (2021–2024).1 this policy is based on a social model of disability to indicate a shift in thinking towards disability in rwanda. whilst the plan is a big step in the right direction, it focuses on children with disability. the increasing prevalence of ncds in rwanda (alleyne et al. 2013; asiimwe-kateera et al. 2015; tapela et al. 2015) and the resultant disability are not a consideration. rehabilitation services for adults with disabilities in rwanda may begin in the acute hospital setting; however, a large number of patients are likely to be discharged without rehabilitation (rhoda et al. 2015). this is regardless of the level of disability. to further add to the problem, community-based services are extremely limited. to adequately and efficiently address the rehabilitation needs of those with a disability in rwanda, we first need to better understand more accurate and comprehensive estimates of the prevalence of disability in rwanda to predict rehabilitation resource needs accurately. in rwanda, the healthcare sector is organised around national referral or university teaching hospitals, provincial referral hospitals, district hospitals, primary health centres (phcs) and health posts (figure 1-a1). physical rehabilitation services are available at public and private hospitals and at semiprivate specialised rehabilitation centres. semiprivate facilities are funded primarily by the international non-governmental organisations (ingos), such as humanity & inclusion (hi) and international committee of red cross (icrc), or faith-based organisations (fbos), such as christian blind mission. for more than 2.86 million rwandans with a disability, publicly funded rehabilitation services are available at 53 hospitals: (1) 4 national referral or teaching, (2) 7 provincial or referral and (3) 42 district hospitals. in addition, those who can pay for specialised physical rehabilitation services are available at four semiprivate rehabilitation centres (figure 1-a1; ministry of health 2018). about half of rwanda’s population is over the age of 18 years (7 208 063 out of 13 411 153 people).2 therefore, suppose we conservatively estimate that 15% of rwandan adults have a disability. in that case, roughly 1 000 000 rwandan adults have access to 57 centres (including those not publicly funded) for rehabilitation interventions or approximately 17 500 persons with disabilities per centre. physiotherapy (pt) services are available at 53 hospitals and the 4 semiprivate specialised rehabilitation centres. according to the rwanda allied health professional council (rahpc), 360 pts are registered to practice in rwanda (table 1), 88 of whom are employed at public facilities (ministry of health-rwanda 2021), whilst the others likely work in private hospitals or ingos. in 2019, there were 0.26 pts per 10 000 people in rwanda (wcpt 2019b), compared with 1.4 pts per 10 000 people in south africa (wcpt 2019a) and 6.6 pts per 10 000 people in canada (canada conference board 2017). the number of pts in rwanda is far less than in other countries. prosthetic and orthotic services are available at four public hospitals and at four specialised rehabilitation centres. according to the rahpc, 68 p&os are registered to practice, with 31 employed primarily in settings supported by ingos. there are 0.05 p&os per 10 000 people, which is precisely the minimum of 5 per one million (0.05 per 10 000 people) suggested by the global standards for prosthetics and orthotics (lemaire, supan & ortiz 2018). table 1a: distribution of rehabilitation services by funding source and type of health facility. the occupational therapy programme began at the university of rwanda in 2014, and there are now occupational therapists (ots) at one public hospital and two specialised rehabilitation centres. twenty-six ots are practicing in rwanda, with most ots (n = 24) employed in settings supported by ingos, such as schools and refugee camps. there are 0.02 ots per 10 000 rwandans, which is lower than the minimum of 750 per one million (7.5 per 10 000 people) suggested by the world federation of occupational therapists (who 2017). speech and language therapists are nearly absent and available at only one private tertiary hospital and one semiprivate specialised rehabilitation centre. there are no speech language therapy programmes in the country. representative of most african countries, rwanda does not have rehabilitation services at the phcs (ministry of health-rwanda 2021). in 2021, the rwandan ministry of health (moh), in collaboration with the who, the united states agency international development and the icrc published a report on the situation assessment of rehabilitation in the republic of rwanda. this report describes the insufficient and nonexistent rehabilitation services in rwanda (ministry of health-rwanda 2021). however, prior to this report, the moh has proposed a new employment health structure that will integrate two pts per phc, one p&o per district hospital and one ot and one slt employed at each referral and provincial hospital (official gazette 2020) for the first time. however, the progress of implementing the new employment health structure is taking time. in addition to a lack of funding for rehabilitation service provision, there are issues unique to lowand middle-income countries compounding difficulties in accessing services. these include transportation expenses because of long travel distances to rehabilitation facilities, long waiting times for appointments and limited knowledge of the available services, both by the public and private personnel (aenishänslin, amara & magnusson 2020; baart & taaka 2018; hamid et al. 2017; rhoda et al. 2015; zziwa et al. 2019). the four semiprivate specialised rehabilitation centres in rwanda are intended as a national resource for all individuals; however, there is an additional cost for these services, which further limits access (ministry of health-rwanda 2021). these facilities have well-established rehabilitation services for children; however, few are tailored to adults (ministry of health-rwanda 2021). as a result, adults with complex needs such as stroke, traumatic brain injuries and spinal cord injuries are discharged from acute wards to attend outpatient rehabilitation at a district hospital or in the community, where these services are either insufficient or nonexistent. with limited human resources to provide rehabilitation interventions, it is imperative to allocate existing rehabilitation resources based on the population’s needs. the data available on the rwandan needs for healthcare services are primarily on access to healthcare services for children and those with mental health issues (hategeka, arsenault & kruk 2020; rugema et al. 2015; ng & harerimana 2016; smith et al. 2017; wanyana, wong & hakizimana 2021). the lack of data on rehabilitation needs of adults with disabilities, despite a growing need because of increased survival rates for those with ncds (cardiovascular diseases [hypertension, stroke], diabetes, cancer) (alleyne et al. 2013; asiimwe-kateera et al. 2015; tapela et al. 2015), makes efficient resource allocation impossible. to address the lack of these data, hi, an ingo that provides rehabilitation services for adults and children in rwanda, conducted a survey to understand costs associated with the provision of outpatient rehabilitation services. using the data from hi on adults accessing rehabilitation services, we conducted a secondary data analysis to describe the type of rehabilitation services provided, the characteristics of people who use these services and the facilitators and barriers for people to access these services. this article describes the outpatient physical rehabilitation services at nine facilities in rwanda. we describe the rehabilitation services by funding source (public or semiprivate) and geographical locations (urban or rural). finally, we use patient-level data to describe the people that use these services and some patients’ facilitators and barriers to attending rehabilitation. research methods and design study design humanity & inclusion developed, funded and implemented a cross-sectional survey to understand the cost of rehabilitation services in rwanda. from september to december 2018, in collaboration with the moh and the national commission of persons with disabilities, hi conducted the survey across 12 rehabilitation facilities supported by public and ingos or fbos in both urban and rural settings. however, this article presents data from nine facilities amongst adults with disabilities. setting the 12 health facilities that provide rehabilitation services were purposively selected. these facilities were selected based on the representation of levels of the health system pyramid (figure 1-a1), two public university teaching hospitals, one public provincial hospital, two public district hospitals and four semiprivate rehabilitation centres. facilities were also selected if they offered one of the physical rehabilitation services (pt, p&o, ot and slt) and were supported by hi (funding to support service implementation for private facilities and provision of equipment for public facilities). this article includes data from only 9 facilities (as presented in figure 1), in which the remaining 3 of the 12 facilities are specialised for children only. figure 1: the number of recruited participants at each facility, divided into public versus semi-private facilities and urban versus rural areas. study population from september to december 2018, children and adults with disabilities were randomly selected by site champions across the 12 selected health facilities. all persons with disabilities or caregivers or parents or caregivers of children under 18 years old who agreed to participate and were present when data collectors were at the health facilities were recruited. of the 385 participants recruited across 12 facilities, this article focuses on the data obtained from 213 adult respondents (18 years or older) with disabilities across 9 facilities. data on service provision were obtained from the heads of departments. to calculate the overall sample size required across the facilities to answer questions on cost-effectiveness, the cochran’s formula was used as follows: (where z = z-score for the standard normal distribution at the significance level of 95%, p = anticipated proportion of people having access to rehabilitation service (50%) and δ = desired precision [5%]): data were collected on 385 participants; however, data for this article included only the adults with disabilities who completed the survey (n = 213 participants) across 9 facilities. data collection the improved financial access to rehabilitation services diagnostics tool (ifar), a tool developed for use in lowand middle-income countries (beguin & boisgillot 2016; boisgillot 2020), provides comprehensive data on the financial status of facilities that provide physical rehabilitation services. it is a 110-item survey that hi developed to understand the rehabilitation services provided and facility’s financial viability. it was completed by the heads of departments at each selected facility and by the eligible participants with disabilities attending rehabilitation services at these facilities. this tool was adapted for use in rwanda by experts in disability and rehabilitation (boisgillot & umuhoza 2020), and 70 out of the 110 item points were used for this analysis. in addition to the data collected using ifar, they collected patient-level data (i.e., patient’s sex, age, marital status, employment status, type of disability, level of education). two health economists (one from rwanda) and two rwandan pts hired by hi coordinated data collection. participants were recruited by hi research staff between september and december 2018, who were on site three days a week during that period. data were collected by eight trained rehabilitation professionals using paper-based questionnaires and tablets (where feasible). all data were collected using lists with responses to select from or yes or no responses. the data collectors participated in a three day training programme that included training on administration of the questionnaire, data collection procedures (recruitment, sampling) and ethical norms in research, particularly data collection. each selected site had a site champion who was briefed on the type of participants needed for the study. site champions randomly recruited all participants, and those who agreed to participate were referred to persons administering the survey. eligible participants who were available during the three days of data collection, and agreed to participate, were recruited for the study. the data from the facilities and patients are presented by the source of funding (public or semiprivate) and geographical location (urban or rural). we were interested in assessing the differences between patients with disabilities who attended public and semiprivate facilities in urban and rural areas. therefore, the data are presented in two sample proportions. data analysis descriptive analyses are reported as counts, proportions for all variables and p-values for demographic characteristics. all analyses were performed using ms-excel version 16 and stata/ic 16 programmes. results data were collected from nine facilities; five (56%) were publicly funded, and four (44%) were semiprivately funded. the five publicly funded facilities serve an estimated catchment of 2 050 000 million people and included two university teaching hospitals out of four in the country and three district hospitals out of 42. no provincial referral or specialised hospitals were included. the four semiprivate specialised rehabilitation centres funded by the ngos or fbos, in the country were all included. these institutions serve an estimated catchment of 430 000 people (table 1a). four of the nine facilities were in urban areas (table 1b). the population estimates of the catchment area are those who would need rehabilitation services in the area and do not consider the number who could pay for the services. therefore, the number of people who can access semiprivate services is considerably less. table 1b: distribution of rehabilitation services by geographical area and type of health facility. rehabilitation staff at the nine health facilities include 63 pts, 16 p&os and 8 ots, serving both children and adults. the availability of rehabilitation personnel ranged from 2 pts at district hospitals to 0 ots at public hospitals. whilst we had 13 pts, 6 p&os and 5 ots at semiprivate specialised rehabilitation centres primarily funded by ngos or fbos, based on catchment areas, publicly funded facilities have an average of 0.2 rehabilitation staff per 10 000 people, and semiprivately funded facilities have an average of 1.2 rehabilitation personnel per 10 000 people (table 1a). the availability of rehabilitation personnel differed significantly by location of the facility, with urban facilities having an average of 0.2 rehabilitation staff per 10 000 people compared to 1.0 rehabilitation staff per 10 000 people at rural facilities (table 1b). description of services received by respondents a total of 213 participants were recruited, 87.0% from publicly funded hospitals (n = 186) and 13% (n = 27) from semiprivately funded facilities. most participants received pt (n = 190 [89.0%]), with much fewer receiving p&o (n = 24 [11.0%]) or ot (n = 3 [1.4%]), and 8 (4.0%) received more than one service (table 2a). a similar pattern was seen at the public hospitals where most participants received pt (n = 175 [95.0%]), with few receiving p&o (n = 10 [5.0%]) and ot (n = 2, 1.1%) and 2 (1.1%) receiving more than one service. at semiprivate facilities, half of the participants received pt and half received p&o (pt n = 15 [56.0%]; p&o n = 14 [52.0%]), with just two (7.0%) receiving both. only one (4.0%) participant received ot. in urban settings, the majority of participants received pt (n = 154 [93.0%]), few received p&o (n = 12 [7.0%]) and two (1.2%) received ot (table 2b). in rural areas, most participants received pt (n = 36 [77.0%]), one-quarter of participants received p&o (n = 12 [25.0%]) and one (2.0%) participant received ot. table 2a: distribution of participants, by funding source, type of health facility visited and rehabilitation services received. table 2b: distribution of participants, by geographical area, type of health facility visited and rehabilitation services received. description of respondents there were more men than women (60% vs. 40%) in our sample and more of our participants were unable to work than able to work (51% vs. 27%). the only difference in demographic characteristics for those in public facilities compared to semiprivate facilities was that there were more women (44% vs. 5%), and fewer people were employed (28% vs. 33%) (table 3a). when comparing participants at urban versus rural settings, urban participants tended to be older (43% vs. 32%), separated or divorced (16% vs. 2%) and either unemployed or in a temporary job (25% vs. 17%) (table 3b). table 3a: p-values for demographic characteristics by source of funding (public versus semiprivate). table 3b: p-values for demographic characteristics by source of funding (public versus semiprivate) facilitators and barriers to rehabilitation use over 85% of participants considered the following as facilitators to rehabilitation service use: confidence and trust in staff, health coverage, family support and easily accessible services, which did not differ by facility except that patients at semiprivately funded facilities reported more family support than those from public facilities (96% vs. 78%) (figure 2). the most common barriers to rehabilitation service use reported by over 60% of participants were transportation costs, delays in finding services, long waiting times and inaccessible buildings. transportation cost was reported more by patients at public facilities than at semiprivate facilities (97% vs. 85%) (figure 3). figure 2: (a) facilitators to rehabilitation use facility funding source where participants were recruited (public: n = 186; semiprivate: n: 27; (b) facilitators to rehabilitation use by participants’ residence (urban: n = 166, rural: n = 47). figure 3: (a) barriers to rehabilitation use by facility funding source where participants were recruited (public: n = 186, semiprivate: n: 27; (b) barriers to rehabilitation use by participants’ residence (urban: n = 166, rural: n = 47). discussion with help from other international agencies, the rwandan moh published a report on a situation assessment of rehabilitation in the republic of rwanda because of the recognition of the need to better understand rehabilitation service in rwanda. this report highlights the lack of rehabilitation personnel, such as speech therapists, rehabilitation physicians and nurses (ministry of health-rwanda 2021). this report also reveals that semiprivate funded rehabilitation centres are more equipped with resources than facilities funded by the public but falls short of understanding who is accessing rehabilitation services and why. our data expand on the information from the situation assessment of rehabilitation in the republic of rwanda report and other studies (rhoda et al. 2015; urimubenshi & rhoda 2011) to describe resources at both public and semiprivate funded facilities in urban and rural settings and to describe who is accessing rehabilitation services. we also describe some patients’ facilitators and barriers to attending rehabilitation. our analysis determined that semiprivate facilities had six times more human resources than publicly funded facilities. facilities in rural areas (predominantly semiprivately funded) had five times more human resources than those in urban areas. people accessed rehabilitation services primarily for physical disability concerns. interestingly, the facilitators and barriers to rehabilitation services were similar across facilities, regardless of the funding source or geographic location. our analysis highlights the most crucial facilitators for accessing rehabilitation, including patients’ confidence and trust in staff, family support and health coverage. at the same time, participants indicated transportation costs, waiting time and inaccessible buildings as some of the significant barriers. it is well known that rehabilitation services are limited in lowand middle-income countries, which makes it imperative to use the existing resources where most needed. we demonstrated that semiprimarily funded facilities had six times more human resources than publicly funded facilities and that rural areas (predominantly semiprivately funded) had five times more human resources than those facilities in urban areas. however, it is unclear whether this distribution of resources reflects the proportion of rwandans living with disabilities in each of these areas. whilst rural (primarily semiprivate) facilities are better staffed, they are more difficult to access because patients must pay for services. thus, the catchment population for the semiprivate facilities is likely much smaller, meaning that staff proportions are likely much higher for semiprivate facilities when considering people’s ability to pay. whilst this increases the staffing ratios for those who can pay, it negatively affects the services available to those who cannot pay. whilst numerically it seems that rural areas are better served, there are many additional considerations that suggest this may not be true. in addition to the issue of access because of payment, there is also the issue of distance to travel and costs associated with long-distance travel that may further affect access amongst the population in rural areas. we demonstrated significant differences in some of the demographic characteristics of those who attended public versus semiprivate facilities in urban and rural settings; however, we do not know where the difference lies within these characteristics. we know that participants access rehabilitation services for physical disability concerns. however, it is unclear whether the needs of rwandans with disability are primarily physical or whether the use of services is driven by the available services. physiotherapists were the primary rehabilitation personnel available at all facilities, whilst p&os were available at five facilities, of which one was publicly funded. occupational therapists were available at one public facility and two semiprivate facilities, and there were no slt services or physicians and nurses providing rehabilitation services. whilst there is a clear need for rehabilitation services that address physical disabilities, it is unclear if other rehabilitation needs are not being addressed. understanding where most rwandans with disabilities reside and their needs is critical to optimally distribute services; however, with the available funding structure, it is unlikely that redistribution will solve the issues of access to services. in addition to better distribution, implementing the moh’s new employment health structure proposed in 2020 will increase the overall number of rehabilitation professionals, particularly in areas with no rehabilitation services (official gazette 2020). physiotherapists will be hired at phcs, p&os at district hospitals, ots and slts employed at the referral and provincial hospitals for the first time. however, the implementation of this new structure is taking longer. the situation assessment of rehabilitation in the republic of rwanda report emphasises the need to immediately implement the moh’s new employment structure (ministry of health-rwanda 2021). the rwandan government is also exploring whether subsidies can be provided so that those with only universal health coverage can access semiprivately funded specialised centres. whilst these government initiatives are positive, implementation could take time. therefore, we suggest strategies to address the rehabilitation issues discussed without additional cost or burden to the system. it is not surprising that most participants reported long waiting times as a significant barrier to attending rehabilitation. even though there are six times more rehabilitation professionals at semiprivate facilities than public facilities, more than 70% of participants attending semiprivate facilities still noted waiting times as a significant barrier. this experience is similar to that of people seeking rehabilitation services in other lowand middle-income countries (bright et al. 2018; mlenzana et al. 2013; ntamo, buso & longo-mbenza 2013; scheffler & mash 2019). whilst the rwandan universal healthcare coverage provides 90% – 100% (depending on the households’ economic situation) financial support for rehabilitation services at public facilities and semiprivate facilities, patients pay 100%; issues such as long waiting times and transportation costs remain significant barriers to accessing services. this is similar to issues noted in other lowand middle-income countries including south africa and nigeria (bright et al. 2018; igwesi-chidobe 2012; scheffler & mash 2019). there is a critical need to identify strategies to capitalise on available resources to augment rehabilitation interventions without additional cost or burden to the system. to decrease waiting times for those in most need, we need to develop triage referral protocols to provide faster services. this protocol could use a decision tree approach to help physicians identify those in the highest need, assign a priority rating and determine what care could likely be provided by a family member or a caregiver (hobbs et al. 2010). patients who need professionals’ interventions could then take the priority rating to a rehabilitation facility where one or two spots are held weekly to see priority referrals quickly. the university of rwanda, the national associations of rehabilitation healthcare professionals, physicians and nurses could lead initiatives to develop triage protocols and decision trees to facilitate the process (hobbs et al. 2010). developing triage protocols could be implemented at the referral stage to prevent a constant flow of patients, long waiting lists and time. in addition, community-based interventions provided by families, community health workers (chws) and lay personnel might offer a sustainable alternative or complement to rehabilitation provided by health professionals (e.g., pts) and provide an accessible and affordable approach with the potential to address the rehabilitation needs in the community in rwanda. home or community-based interventions could also be developed to address the rehabilitation needs. the who proposed ‘task shifting’ more than a decade ago to supplement healthcare provision in lowand middle-income countries (world health organization 2008). more recently, ‘task sharing’ was suggested as an alternative to task shifting, when the responsibility for care provision cannot be completely assumed by those trained, skilled and credentialed to perform the tasks (anand et al. 2019). in addition to using the existing rehabilitation services more efficiently, we could supplement rehabilitation services by training existing healthcare providers on key aspects of rehabilitation. for example, rehabilitation professionals can offer appropriate and relevant training to nurses at phcs, where rehabilitation services are nonexistent. the need to train nurses at phcs was also recommended in the situation assessment of rehabilitation in the republic of rwanda report (ministry of health-rwanda 2021), and training initiatives could begin during professional training in university programmes. training non-healthcare professionals, such as family caregivers, chws and lay personnel, have been supported in previous studies conducted in lowand middle-income countries. for example, a study was conducted in bangladesh (rahman & salek 2016) and thailand (pitthayapong et al. 2017) in which caregivers of patients with stroke were trained on incontinence care, bed positioning and activities of daily living (adls). the training provided to caregivers achieved positive results on patients’ outcomes, such as improved adls (rahman & salek 2016). likewise, training chws in south africa to provide rehabilitation interventions, such as transfers, bed mobility or positioning, has resulted in positive patient outcomes such as reduced pressure sores and improved mobility (nesbit & clark 2019). some studies have demonstrated the benefits of training caregivers and chws (nesbit & clark 2019; magwood et al. 2020; pitthayapong et al. 2017; rahman & salek 2016); however, additional research is needed to identify how to develop and evaluate these training programmes in rwanda. rehabilitation professionals could use existing community-based interventions and train chws to provide simple but effective physical rehabilitation interventions in the community (anand et al. 2019; dawson et al. 2014). the proposal to move rehabilitation from a therapist-led facility system is a significant shift; requiring buy-in from multiple stakeholders in multiple systems. it builds on the gains achieved through community-based rehabilitation (lemmi et al. 2016; mannan et al. 2012) and could create a community-sustained solution that could be funded at a fraction of the costs of a therapist-based facility solution for rehabilitation. we recognise this solution will take a buy on many levels and a revisioning of service provision. technology could also be used to augment rehabilitation services, particularly in countries with limited resources (jesus et al. 2017; jesus et al. 2019; lincoln et al. 2014; veitch et al. 2012). low-cost technologies using mobile phones and telerehabilitation (where the internet is available) could offer additional support for families and chws in rwanda to provide rehabilitation interventions at home or in the community. for example, the university of rwanda could introduce and support telerehabilitation interventions during outreach programmes. telemedicine has been successfully developed and implemented in rwanda (roodenbeke et al. 2011). for example, mhealth programmes using mobile phones have increased maternal and child health services (ruton et al. 2018) and increased access to antiretroviral drugs (nsanzimana et al. 2012). these achievements have been possible because many rwandans own a mobile phone. telerehabilitation has provided cost-effective services in lowand middle-income countries (fatoye et al. 2019; sarfo et al. 2018) and could be an approach to increase access to rehabilitation services in rwanda. limitations of the study we have undertaken a secondary data analysis to describe the people attending rehabilitation facilities but were limited to the data collected for the health economics study. participants were purposively recruited, which could have biased their response to the data collectors, and thus did not provide the exact situation of the current rehabilitation issues for the rwandan users. although recruitment practices were limited from september to december 2018 and 3 days per week, we do or do not feel this limits the generalisability of our results because we recruited participants from both public and semiprivate facilities in urban and rural settings. a key consideration when interpreting our data is whether the sample was representative of those with disability in rwanda and the facilities that they access. our participants were identified when they attended a rehabilitation facility and therefore represent only those who can attend rehabilitation facilities (e.g., those who receive a referral, have a means of getting to the facility and get an appointment). most data were obtained from urban and public facilities with an under-representation of rural and semiprivate facilities and no representation from referral or provincial hospitals. therefore, we cannot state that similar patient profiles, barriers or facilitators are experienced in these settings. we were also limited in the number of variables we could include in a regression model if we had to look at predictors of being in a semiprivate or public hospital because we only had 27 people in the semiprivate hospitals. we also calculated the catchment for public and semiprivate facilities using estimates of the population in the area but did not have an idea of the proportion of the population who could afford versus those who cannot afford for semiprivate facilities. our study describes people who attended a facility, which is influenced by the services provided. we cannot generalise the findings regarding the type of disability because adults with disabilities use the available services (physiotherapy), not necessarily the services they need. understanding the needs of persons with disabilities who require but cannot attend rehabilitation should be a future research priority. the survey only focused on patients with physical disabilities, which meant that our conclusion was only limited to this population. the survey’s primary purpose was to collect data on cost, which enabled us to only look at the quantity and not the quality of services. as a result, we had no data on the specific conditions (that resulted in physical disabilities), the number of sessions attended, needs and therapy outcomes of people attending facilities that provide rehabilitation services. this information would be beneficial to support the provision of appropriate rehabilitation care. conclusions the availability of rehabilitation services for rwandan adults with physical disabilities is limited, with greater access to services in semiprivate compared to public facilities. whilst family support help patients attend rehabilitation, transportation costs remain a significant barrier to people attending rehabilitation. strategies to address these issues are urgently required and should complement the moh solutions that will be implemented in the next years. these strategies can include developing triage protocols that could be implemented at the referral stage to prevent a constant flow of patients, long waiting lists and time. in addition, community-based interventions provided by families, chws, and lay personnel could extend the outreach of basic rehabilitation services to those with long-term health conditions and disabilities living in the community in rwanda. this would require a major system shift that will require buy-in from multiple stakeholders in multiple systems but could be an efficient and sustainable solution. finally, service provision could be augmented with the use of low-cost technologies using mobile phones and telerehabilitation (where the internet is available) and could offer additional support for families and chws in rwanda to provide rehabilitation interventions at home or in the community. acknowledgements we acknowledge humanity & inclusion in developing and collecting the data that are used for this article. the authors wish to thank all participants from the selected facilities for their collaboration in the study. we would like to thank the support of linda nguyen for reviewing and editing this article. competing interests the authors reported no potential conflict of interest. although ines musabyemariya is a paid employee of humanity & inclusion (the funding organisation for data collection), her authorship in this manuscript was not influenced by her employer. authors’ contribution this article was conceptualised by a.k., j.b. the methodology was the responsibility of a.k., j.r., l.t. and j.b. the formal analysis and the writing of the original draft was completed by a.k. the project administration was the responsibility of i.m., while data curation was done by a.k., i.m. the writing review and editing was completed by a.k., j.r., l.t., j.k. and j.b., while supervision was conducted by j.r., l.t., j.k. and j.b. ethical considerations the rwandan national ethics committee (rnec) provided approval (irb 00001497), permission to collect data from the selected facilities was obtained and all participants provided written informed consent. in addition, confidentiality and anonymity of participants enrolled in the study were ensured using unique identification numbers on all data collection forms (11 may 2018). funding information the authors received no financial support for the research, authorship, and/or publication of this article. data availability the data presented in the article are secondary data, and they are not publicly available because ‘data availability’ was not covered in the ethics approval process, and participants had not requested permission when they completed the consent forms. disclaimer the views and opinions expressed in this article are those of the 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https://worldpopulationreview.com/countries/rwanda-population abstract introduction research methods and design results discussion conclusion acknowledgements references footnote about the author(s) zara trafford department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa citation trafford, z., 2023, ‘“people don’t understand what we go through!”: caregiver views on south africa’s care dependency grant’, african journal of disability 12(0), a1114. https://doi.org/10.4102/ajod.v12i0.1114 original research ‘people don’t understand what we go through!’: caregiver views on south africa’s care dependency grant zara trafford received: 22 aug. 2022; accepted: 08 nov. 2022; published: 20 feb. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: caregivers are under enormous pressure in trying to provide for the needs of their children with disabilities in south africa. the care dependency grant (cdg), an unconditional cash transfer, is the primary state-subsidised intervention for the social protection of low-income caregivers of children with disabilities. objectives: the primary objective of this substudy, within a larger multistakeholder qualitative project, was to investigate caregiver perspectives on cdg assessment and application, their beliefs about the purpose of the cdg and how they actually used these funds. methods: data for this qualitative research included in-depth individual interviews and one focus group discussion. six low-income caregivers who were current or previous cdg beneficiaries participated. deductive thematic analysis was conducted using codes related to the objectives. results: access to the cdg was usually too late and over-complicated. caregivers were grateful for the cdg but it was insufficient to cover the costs of care, in the context of high unemployment and weaknesses in complementary social services. pressure on these caregivers was intensified by criticism in their social environments and a lack of respite care. conclusion: caregivers need service providers to be better trained and for systems of referral to available social services to be strengthened. the whole of society ought also to be targeted for increased social inclusion facilitated by improvements in understandings of the lived experience and cost of disability. contribution: the rapid time from data collection to write-up of this study will aid in building the evidence base on the cdg, an urgent priority for south africa’s journey towards comprehensive social protection. keywords: care dependency grant; social assistance; caregivers; children with disabilities; south africa; qualitative research. introduction the care dependency grant (cdg) is an unconditional cash transfer available to the primary care giver of a child with disabilities under south africa’s social assistance programme. these children and their households are ‘the most economically vulnerable’ (unicef/dsd 2015:11) in the country, partly because of the high direct and indirect costs associated with disability (hanass-hancock et al. 2017). direct costs include those that are specific to impairment (such as assistive devices, therapeutic services, accessible transport and caregiving), while indirect costs are those related to a loss of income or opportunity because of the demands of caregiving when appropriate child care is too expensive, inadequate or absent (banks, kuper & polack 2017; banks et al. 2021; white et al. 2018). in the context of extremely high unemployment rates and little respite or educational care for poorer children with disabilities in south africa (sa), caregivers often have to leave work to care for their children, as reported since the early 2000s (de koker, de waal & vorster 2006; delany et al. 2005; duma, tshabalala & mji 2021; letsie 2016; makwela & smit 2022; saloojee et al. 2007). according to international and regional conventions and local commitments to their civil rights, caregivers of children with disabilities in sa should have access to a wide range of interventions for social protection, including adequate and appropriate education and healthcare, assistive devices and spaces for play and recreation (trafford et al. 2021). however, appropriate public services are generally insufficient, inaccessible or unavailable for many families, especially those who care for children with disabilities (modula 2022; philpott & muthukrishna 2019; tigere & makhubele 2019). in practice, then, the cdg is sa’s key (and often the only) intervention for the social protection of children with disabilities and their families. numerous studies have examined the other cash transfers available under the sa social assistance system, a valuable knowledge base that captures a diverse range of perspectives and uses both quantitative and qualitative data sets (adato, devereux & sabates-wheeler 2016; granlund & hochfeld 2020; hajdu et al. 2020; kelly 2017, 2019; oyenubi 2021; patel, hochfeld & chiba 2019; schneider et al. 2011; zembe-mkabile et al. 2015). however, studies of social assistance available to people with disabilities or children in sa often exclude the cdg from deeper analyses because of its low beneficiary numbers. as such, there is only a limited literature that is specifically focused on the cdg (de koker et al. 2006; delany et al. 2005; dimhairo 2013; khumalo 2020; letsie 2016), some of which is now out of date or based only on desktop reviews. more regular and diverse investigative work is needed in this area (tigere & makhubele 2019). to contribute to growing this evidence base, a multistakeholder qualitative project focused specifically on the cdg was conducted. as one of a range of stakeholders, this section of the project gathered the perspectives of six primary caregivers of children with disabilities who were currently or had previously been in receipt of the cdg. this article describes and discusses grant recipients’ narratives about the processes and procedures involved in applying and being assessed for the cdg. it also shares how this group of caregivers made decisions about using the cdg under low-income constraints and explores the negative effects of a specific kind of community and relational scrutiny, previously reported in gauteng province (letsie 2016). the article concludes with a brief discussion of the idea that the ongoing deprioritisation of this group in sa may be partly because of their (not so) ‘benign neglect’ by government and in society. this deprioritisation could be perpetuated unintentionally in the coming years, as calls for a universal basic income increase. if the country truly aims to meet its commitments to the well-being of children with disabilities and their families, deeper and more sustained attention must be paid to the cdg. background to the care dependency grant the cdg is sometimes grouped with two other grants (the local term for cash transfers) that are available for the support of children in sa: the child support grant (csg) and the foster care grant (fcg). however, the south african social security agency (sassa), which administers applications for and the distribution of all grants, classifies the cdg as a ‘disability-related grant’ (trafford & swartz 2021). the cdg is available to the primary care giver of a child who ‘requires and receives permanent care and support services’ because of their ‘physical or mental disability’ (south african parliament 2020). the cdg is distributed monthly to beneficiaries, from the time of approval until their child with disabilities turns 18 (sassa 2021). the grant is currently worth r1980.00 (usd120.00) per month, and there were 155 717 beneficiaries as of the end of september 2022 (sassa 2022a). initially instituted in 1993, there was a brief uptick in cdg beneficiary numbers in the early 2000s (de koker et al. 2006; delany et al. 2005), but this quickly slowed and access is considered to be falling short of meeting the population-level need (philpott & muthukrishna 2019; redfern 2014). however, as south african childhood disability prevalence data are of questionable validity, it is difficult to estimate the scale of exclusion (kidd et al. 2018; philpott & mckenzie 2017). the other two disability-related grants include: (1) the adult disability grant (dg), which has the same value as the cdg and is for adults ages 18–60 who cannot participate in the labour market because of: (1) impairment, and (2) the grant-in-aid (gia), which provides an additional amount of r480.00/usd29.00 per month to recipients of the dg, older person’s grant or war veteran’s grant (sassa 2022b). the gia is a contribution to the cost of a part-time carer for individuals who need regular support from another person because of physical or mental impairment. to gain access to the cdg, caregivers must meet certain eligibility requirements that are described in the social assistance act, instituted in 2004 and amended in 2008, 2010 and 2020 (south african parliament 2004, 2020). only caregivers whose income falls under the means test for the cdg are eligible, with the exception of foster parents, who can access the cdg regardless of income (dsd 2022). the means test threshold is defined by calculating the annual value of the cdg and multiplying this by 10, so using the current annual value of the cdg, an applicant’s income cannot exceed r237 600.00 per year (dsd 2022:43). if an applicant is single, the annual income of a single applicant is taken into account – if they are partnered, half of the annual income of an applicant and their spouse is taken into account (dsd 2022). thus, the limit on average monthly earnings is r19 800.00, but this does not exclude much of the population, considering only 2% earn above this threshold and the national minimum wage is r3570.00 per month (goldman et al. 2021). a more important measure for access to the cdg is thus whether the applicant’s child is considered eligible by a medical doctor, who must assess a child’s impairment(s) and recommend whether or not the grant should be awarded (cf. trafford & swartz 2022, for a more detailed discussion). research methods and design participant recruitment and inclusion under covid-19 the overall research project for which these data were collected was designed as a qualitative ethnographic study. this section of the study was designed to serve as a companion to reports on the perspectives of frontline decision-makers (trafford & swartz 2022); bureaucratic administrators (trafford & swartz 2021); key informants from civil society, social work and academia; and policymakers. the intention was to conduct a deep investigation in a specific geographic area to explore the perceptions of various relevant role-players regarding the intended use and actual function of the cdg, as well as their related subjective experiences. however, because of the strict ethical constraints on in-person research imposed by coronavirus disease (covid-19), the original study design was not possible and data collection had to be moved online. it was particularly difficult to connect with caregivers. it seemed that only being able to conduct research remotely might perpetuate the exclusion already experienced by economically poor caregivers of children with disabilities in sa, so this was delayed as long as possible and alternative options were explored. revisions to south africa’s protection of personal information act (popia) were an additional barrier, because organisations that serve or support caregivers could not provide direct contact details, even for caregivers who might have expressed an interest in participating. thus, an ethically approved recruitment flyer was circulated among organisational networks in the western cape and beyond. under the oppressive conditions of lockdowns and an economic depression, participation in research was a sizeable request and few responses were received. however, because of the historical and ongoing neglect of this group, it seemed important to include all of their voices, without focusing too much on narrow inclusion criteria. arrangements were thus made (via whatsapp or phone call) to speak with all respondents who had initiated contact, resulting in a sample of women from different provinces, some of whom had raised their children with disabilities in different decades. participant characteristics participants were all women without disabilities, ranging from 31 to 63 years old (table 1). all were now or had in the past been in receipt of the cdg and were the biological mothers of the children for whose care they received the cdg. the terms ‘child’ or ‘children’ in the results and discussion sections of this article is not used to imply that those who were over 18 at the time of interview were still children or to infantilise them. instead, the term ‘child’ was used in light of the relationship in question, because all of the participant caregivers were also the actual parent of the disabled son or daughter about whom they were talking. all but one of the participants lived full-time with their disabled son or daughter. one caregiver (cg2) shared the grant money for and care of her disabled daughter with her own biological mother, the child’s grandmother. caregivers’ sons and daughters ranged from 9 (born 2013) to 36 (born 1985) years old (table 1). one respondent’s son had died at the age of 22 in 2019. half of the mothers had not finished high school, but some had later pursued diplomas or nondegree qualifications related to disability advocacy work (table 1). as the focus of this work was on exploring the subjective experiences of caregivers through semistructured conversations (as opposed to a structured survey), gathering detailed information about these caregivers’ incomes was not the aim. all participants were, however, living in underserved and economically poor areas. only two were currently employed and in receipt of regular but low income; one was a domestic cleaner and the other a carer-to-carer trainer. in some instances, the household gained a small amount of additional income from the respondent’s male partner, but this was not always regular, and mothers could not necessarily access these funds for the care of their child with disabilities. four of the participants lived in the western cape and two were based in gauteng, provinces in southern and central sa, respectively. table 1: participant characteristics and demographics. data collection and analysis data were collected between july 2021 and april 2022. data collection included three semistructured in-depth individual interviews (idis), with lengths ranging from 1 h 30 m to 2 h 15 m. in-depth individual interviews were conducted via whatsapp video call at a time that suited the participant. mobile data bundles were provided to participants prior to our conversations. one semistructured focus group discussion (fgd) of 4 h 20 m was also conducted, with an additional three caregivers. during the focus group, the author sat in a room with a two meter distance between each person, on chairs that had been sanitised. each person wore an n95 mask and used hand sanitiser repeatedly. due to the aforementioned ethical constraints on in-person research mandated by the stellenbosch university research ethics committee for social, educational and behavioural research [rec: sbe], data collection was only conducted in english, as it was not possible to work with an interpreter. english was not the participants’ first language, but conversations to arrange times and to build rapport were conducted with each participant before and after data collection. all participants expressed themselves fluently, both verbally and in writing, and also confirmed that they were comfortable speaking in english on the informed consent forms they were provided with prior to data collection activities. although the author did not communicate in the participants’ first language, all participants commented that the time had gone quickly and that they had enjoyed and appreciated the opportunity to talk about their lives, indicating that this was a positive experience for them. in the single instance during the fgd where one participant was unsure of the english word for a concept she wanted to express, she asked one of the other participants, who translated from isixhosa for her, suggesting that she felt comfortable enough to ask her peers if she was unsure of anything. the three fgd participants had shared transport to the venue and were already friendly by the time they arrived. they shared jokes and commiserated with one another. this contributed to a relaxed environment, in which deeply personal narratives were quickly and openly shared. the participants all joked with and teased the author too, suggesting that a comfortable space was co-created in which the power differentials were not erased but were, hopefully, minimised. it is not possible to be certain, but it is not clear that the presence of a translator would necessarily have made participants more comfortable, as the additional person in the room may also have been perceived as a silent or judgemental witness. all data collection and verbatim transcription were conducted by the author. transcription served as initial data familiarisation, and repeated analytical reviews of the written transcripts allowed for the identification of common themes. themes were discussed with a senior colleague, who also reviewed the penultimate and final drafts of this article. analysis for this article was primarily deductive, and codes were drawn from questions relating to the original research project objectives. these codes were applied to idi and fgd data. the results presented here focus only on the data that corresponded with these codes, which included eligibility rules for the cdg; caregivers’ experiences of the process of gaining access to and receiving the cdg; their beliefs about the purpose of the cdg; and its actual uses in their households. forthcoming publications will provide additional insights into their experiences of life, caregiving and relationships with their children with disabilities. ethical considerations an application for full ethical approval was made to the rec: sbe, and ethical consent was received on 28 november 2019 (reference number psy-2019-13097) and renewed annually. procedures for participation and protection were in accordance with the ethical standards of the rec: sbe and with the 1964 helsinki declaration and its later amendments. as individual interviews were conducted via whatsapp, specific permissions (including data safety and storage procedures) were sought and approved. written and verbal informed consent was obtained from each participant. each participant was also given a copy of the informed consent form to keep. important consent issues were reiterated at the beginning and the end of each activity. in the focus group, it was emphasised repeatedly that although any quotes or data shared in this write-up would be anonymous, it was possible that other participants could breach confidentiality. participants were thus urged to protect one other, so that they could share freely in the group, but not to feel obliged to answer any questions or to share anything that was so personal that they would feel vulnerable. only the author has had access to the data set, which is stored on password-protected cloud storage and backed up to external storage. all the data have been anonymised using alphanumeric codes based on the order of activities (cg1, cg2, etc.). results who should tell caregivers about the care dependency grant, who is eligible and when and how should they gain access? participants felt that caregivers should be instructed to apply for the cdg immediately upon receiving a relevant diagnosis or at birth, if the child’s disability was already known. for them, there was a direct link between diagnosis of a child’s disability and access to the grant: ‘[i]f you have a child with a disability … you are eligible for the grant. because … your child has got a lot of diverse needs … that you’re going to need to attend to.’ (cg1, 63 years old, western cape) ‘i think [the cdg is] supposed to be given by the doctor when the doctor diagnoses your child. but they don’t do that. with my son… i applied for a grant… three years [after] knowing that he has autism, because no one ever told me that he’s supposed to get a grant.’ (cg3, 46 years old, western cape) ‘[…when] they discharged me [after my baby’s birth], they knew what the problem [was … but] i didn’t immediately get the care dependency grant. when i [went to hospital for my child’s appointment later, a] doctor said, “no, you should get the [cdg]” … [but] it took [8] months, [and] i had to go [to the offices] … 20 or 30 times!’ (cg2, 31 years old, western cape) in contrast to what they felt was appropriate, participant caregivers had generally had a gap of months or years between their child’s diagnosis and their receipt of the cdg. an idi participant from gauteng explained that after being referred by her treating doctor, who indicated that her child was eligible for the cdg, she had to make numerous trips back and forth between two doctors in order to eventually gain access. one mother in the fgd had been given a form that certified her son’s impairment (cerebral palsy [cp]) and was instructed by hospital doctors to apply for the cdg immediately after he was born. however, when she had first tried to apply, she was turned away in the western cape and again in the eastern cape by sassa clerks, who appeared to be making this decision themselves rather than relying on the doctor’s assessment form: ‘[… t]he doctor said, “he won’t walk, [sassa is] supposed to give him this grant.” but [sassa said], “no, we want to see [for] ourselves if, really, this child … won’t walk” … [in the] eastern cape, they [told] me the same: “we are not sure if he is disabled, so we are going to give you … r270.00 [i.e. the child support grant at the time]” … my son [only] got his [cdg] … after four years.’ (cg4, 32 years old, western cape) another idi participant reported the same problem: ‘[p]eople are really struggling … they’ve been told so many stories, “go back to your doctor, he will hand you the letter.” [but] that is a process! … so people end up giving up … [but] you look at the family, [and] they really need [the cdg].’ (cg6, 53 years old, gauteng) participants indicated that the onerous process of trying to access the cdg was ‘too much’ for some other parents of disabled children whom they knew. these parents often gave up and settled for the csg, which is worth less than a quarter of the cdg and is utterly insufficient for meeting their child’s needs. the same fgd participant who had previously said that she had been to sassa offices ‘20 or 30 times’ also commented that the officials she had encountered had been uncaring and unresponsive. after walking 10 km to these offices every day, she had called a helpline: ‘[t]hose people [at sassa] … don’t care … you want to get information about what’s happening with [your] child’s grant [application but they say,] “no, there’s nothing we can do” … [later, i heard] on the news, “if you have a problem with government issues, call these offices.” when i called … the guy was shocked … one hour [later], i received a call [from] the manager [of the same local sassa office] saying, “please can you come to our offices tomorrow so we can meet?”’ (cg2, 31 years old, western cape) this parent was subsequently back-paid for the long wait, but others may not be as lucky. although the number of visits made to sassa offices may have been exaggerated, this was clearly an arduous and exhausting process. many caregivers may not have the capacity to be as persistent. caregivers in this study expressed serious frustration with long waiting times, poor and dismissive treatment from sassa officials and a lack of appropriate referrals during the process of application for a cdg. discussion on the topic of severity and its influence on access to the cdg was part of the semistructured interview guide used for data collection. in response to questions on this topic, one idi participant responded that she knew that approval of the cdg was often linked with a severe diagnosis (cf. trafford & swartz 2022) but worried that many medical assessors were not well-informed enough about childhood disability to accurately gauge severity. this could result in delayed access or inability to access the cdg, to which she believed these children were entitled: ‘[usually, with cp] it’s a yes [to the cdg] … [but] it depends on … severity… at the age of three years, some parents say… they’ve been told [by sassa] that it’s just a matter of time – the child will be able to do this, the child will be able to do that… [but] at the end of the day, the child is still in level four [and] doesn’t move [independently]!’ (cg6, 53 years old, gauteng) this participant had both the lived experience of parenting a child with cp and the professional experience of being a carer-to-carer trainer working with disability specialists in an organisation focused on supporting parents of children with cp. she was frustrated that if a child was born with, for example, level 4 cp and would likely never be able to complete activities of daily living on their own, ‘waiting to see if [they] will walk’ was a waste of time, during which parents could be receiving the cdg. participants were also asked to comment on sassa’s recent shift towards allowing online applications in an effort to improve access. one parent who had been involved in a parent-led disability advocacy organisation since the 1990s was concerned that moving these services online would actually result in more exclusion. while reflecting on her work with low-income parents in the covid-19 pandemic, during which meeting spaces rapidly moved online, she observed the following: ‘[… i]t is difficult for [low-income parents] to do online processes … how do we make it accessible for parents … the new way of working via all these devices and platforms? … we struggled [during covid-19 lockdowns] to connect to our parents … you will schedule a meeting for 10 o’clock … you will jump on, get disconnected, jump on, get disconnected. eventually, you start your meeting at 11:30 … and it depends where the parents are situated … is it an area that is accessible? is it a rural area? … this is the new normal, but there’s a lot of things that still need to [change].’ (cg1, 63 years old, western cape) this participant worried that an intervention that was supposedly designed to improve access would not actually reach those who were most disadvantaged by poverty, rurality and infrastructural weaknesses. more comprehensive intersectoral and thoughtful planning needs to inform attempts to upgrade such systems, in the context of widely varying resource distribution and patterns of access. the purpose of the care dependency grant when asked what they understood the purpose of the cdg to be, caregivers generally said that its main function was to replace the income of a primary care giver of a child with disabilities because parents often had to leave their jobs to care for their child full-time: ‘[m]ost parents … can’t go to work, to go and look for a job … because we have these kids [to care for].’ (cg2, 31 years old, western cape) being forced to leave a job was both economically and emotionally difficult, and caregivers wished there was more state support in place to help: ‘i was going to be promoted to … trainee manager. [but my child] had to go for an operation, for the [holes in her] heart … i told my manager, “i need to stay [with my child in hospital, please] transfer me,” [but] my manager said, “no, i can’t lose you” … i had to decide ok, let me just quit my job and quit that opportunity that was going to be so beautiful, going to be life-changing for me.’ (cg2, 31 years old, western cape) ‘i used to have a better salary, to afford my kids. but i had to stop working, and [now i] have an ecd that is not being funded by the government, so there’s no salary, no stipend, no nothing … we’re supposed to get [some support] to look after these kids, or maybe someone from the government [who can] help us [look after our kids while we] go and look for a job.’ (cg3, 46 years old, western cape) one participant observed that the cdg was also aimed at improving equity, as it might assist some parents in bringing the potential of their child with disabilities for access up to the level available for children without disabilities: ‘in my understanding, the grant … is whereby our social care workers, our doctors, and our government are trying to meet the parents halfway, so that the child can have a better life like any other child.’ (cg6, 53 years old, gauteng) all participants commented on the strain of having to care for a child with specific needs without adequate social or state-sponsored respite care. caregivers whose children were under 18 were also concerned about what would happen financially when their children reached adulthood, as they all expected their child to continue needing support beyond that age: ‘[w]hen it’s coming to the time where a child is changing [from] the care dependency to a[n adult] disability [grant], i don’t understand why there must be months that he doesn’t get [support] … i don’t see even the need to apply, because [i think] they’re supposed to check the child’s age and change [the grant they receive] … automatically.’ (cg3, 46 years old, western cape) these caregivers emphasised the long waiting times they had previously described and were worried that it would take a long time to regain access or that they might be refused, even though they did not expect their children to be able to find employment as adults. the care dependency grant: everything and nothing as beneficiaries can decide how they use their cdg funds, parents were asked how they made decisions about expenditure. costs that were specific to their child with disabilities included those previously reported among low-income caregivers: transport, school fees, specialised food and clothing, assistive devices, internet and paying people to provide care to their children. it was also clear that even when complementary supports such as subsidised medication were supposedly available, these were often inaccessible or inadequately planned: ‘[t]he nappies are expensive, the transport is expensive … i really respect whoever came up with that idea that … children with disabilities must get free medication … but … it depends on the kind of medication, because [some] medication is expensive, you have to go to the pharmacy to get those ones. [but] you are not working – how can you afford those medications?’ (cg6, 53 years old, gauteng) similarly, although some schools were subsidised, these were scarce, too far away or insufficiently resourced to provide what they promised: ‘[my child] needs physio[therapy] … they say at the hospital, “now that your son is at [a special] school, the school is supposed to have a physio[therapist].” [but] the school doesn’t! you end up being a bad parent if you’re going to fight [with the school] … [so] i have to pay the school fees, the transport [and] … i have to pay for him to get physio [privately].’ (cg4, 32 years old, western cape) evidently, the cdg was often depleted by paying out-of-pocket for services that ought to be publicly available or by seeking expensive private care. caregivers were grateful for this income and felt that it was ‘very important’ (cg3, 46 years old, western cape), but all observed that it was not sufficient for combatting the enormous exclusion and expenses they faced. one mother, who had been in receipt of the cdg for 12 years, commented that the cdg was ‘a drop in the ocean’ (cg5, 35 years old, gauteng) in the face of her monthly costs. when asked how she made plans about using the cdg from month to month and if this ever changed, she described the complicated calculations and compromises she regularly had to make in trying to ensure her children’s needs were met: ‘[…w]e’ve missed a couple of doctor’s appointments … because she has grown [so] i can’t carry her anymore … if i hire transport – i don’t have a car obviously – they charge me 750 to a thousand [rand] … one pack [of] 30 [nappies] is 370 [rand, and] i buy 2–3 [packs per month] … if i bought two for a month then … toward month-end, i have to buy a pack of ten, so it can last up until i get my grant … [the same] 750 [i might have used for transport to her appointments] … would cover one month of nappies.’ (cg5, 35 years old, gauteng) in addition, while all caregivers felt that ‘the money that [our children] get … is only for their personal [needs]’ (cg3, 46 years old, western cape), as this idea was discussed further, caregivers explained that cdg funds often had to be used to support others in the household. when faced with the needs of their other children and minimal or no alternative sources of income, caregivers had no choice but to juggle their priorities and try their best to balance expenses, which sometimes meant that there was not enough money available to adequately meet the specific needs of their child with disabilities. finally, these mothers felt strongly about providing well for their children with disabilities but often expressed guilt that they might be doing this improperly or insufficiently, which was closely related to the lack of support and training available to poorer parents of children with disabilities, especially those with less common or misunderstood impairments. for example, one mother said that she would massage her child’s muscles when his body got ‘stiff’, but she worried and was ‘afraid … [that] maybe i’ll be too harsh’ (cg4, 32 years old, western cape), because she had not been given sufficient training. another, whose teenage son was autistic, described the costs associated with neurodiversity. although her son did not need some of the consumables commonly associated with childhood disabilities (such as incontinence products), other purchases (such as internet access) were important for maintaining her son’s quality of life and his routine, often critical for autistic people. this caregiver also tussled with the difficult emotional experiences she had had with her son, who could be destructive and aggressive when he was unhappy. she felt that ‘if the government gave us some training when they diagnose the child, then maybe i would be able to control [his] tantrum[s]’ (cg3, 46 years old, western cape) others’ scrutiny and invasive comments on caregivers’ parenting and receipt of the care dependency grant caregivers in receipt of the grant reported that they experienced enormous scrutiny from their communities regarding their parenting and financial choices in relation to their child with disabilities. onlookers perceived recipients of the cdg as having ‘a lot of money’ (because most other parents in their neighbourhoods would only be able to access the smaller csg) and were highly critical if it appeared that these caregivers were not providing appropriate or sufficient care to their children with disabilities: ‘[people] are talking … “your son get[s] more money!” … [but] they don’t understand the situation … the other day the social worker came to my house to say, “this lady … has laid a complaint about you … she’s complaining that you always lock your child in the yard” … i explained … that no, my son [has] autism [so] when he [is] outside, we have to make sure that there’s someone [with him] … really, people … don’t understand what we go through!’ (cg3, 46 years old, western cape) ‘they don’t understand that it’s because my son has more … needs than their child. they think maybe i’m special, or the government did me a favour to give me more money.’ (cg4, 32 years old, western cape) these criticisms were apparently based more on onlookers’ own beliefs about what care looked like, rather than a proper understanding of the circumstances or the needs of the child in question. the reactions of neighbours and family members to their receipt of the cdg placed additional emotional and economic pressure on caregivers: ‘[o]ne time … [my child] didn’t have enough clothes and it was towards winter. there was a sale [at a shop where my mother] has an account. i asked her, “mom, can you help me out with … clothes?” and she was like, “[your child] gets her grant … it’s more than enough.” i think that’s when i really stopped asking for help from [my mother].’ (cg5, 35 years old, gauteng) a few respondents indicated that for some people, the pressure to show others that they were looking after their children properly might mean that they used cdg funds for less useful purchases that they would not otherwise prioritise: ‘there is pressure … i’ve seen some parents buy expensive clothes for their kids … because what they’re getting from the society is: “you earn a lot of money for your child and yet your child is dirty, or they’re wearing cheap clothes, or they don’t have shoes, or they don’t have fancy food” … [they think] you are chowing [i.e. using up] their money for your own needs and you’re not taking care of your child.’ (cg5, 35 years old, gauteng) although caregivers in this study argued vehemently that parents of children without disabilities could not understand how different (and expensive) their parenting experiences were, they still felt pressure to show that they were good parents. for them too, this meant keeping their children clean and well-dressed, which may have been intensified or influenced by onlookers’ explicit judgments on these visible aspects of care. in the fgd, one mother spoke with great pride about treating her disabled child and her non-disabled child exactly the same as one another: cg4, 32 years old, western cape: ‘i have two boys and they like clothes … i bought them pairs of nike, so they are the same, because people like to say, “ohh wow, [your nondisabled child’s] shoes are much better than [your disabled child’s shoes]!”’ cg2, 31 years old, western cape: ‘it’s irritating!’ cg4, 32 years old, western cape: ‘i say … “don’t talk to me like that because these are my children and i like them equally!” … so i bought them the same shoes … and then they’ll say, “ooh, you bought [your disabled child] these shoes but he can’t [even] walk?!”’ zt: ‘[so] it’s never good enough?’ cg3, 46 years old, western cape: ‘never!’ cg2, 31 years old, western cape: ‘never!’ cg4, 32 years old, western cape: ‘never never!’ this also led to some caregivers differentiating themselves from other parents of children with disabilities who they felt were less caring and attentive: ‘[…o]ur kids they are the cleanest, our kids they are the most beautiful kids … [my child] looks spot on. the teacher even sends me pictures … i’m happy because … there are people with a child with disability who cannot even bathe their kids … they will just leave their child looking anyhow.’ (cg2, 31 years old, western cape) by the end of a long conversation on this topic, which was also explored with idi participants, caregivers were unanimous that how they treat their children with disabilities was ‘never enough’ for onlookers, whose criticisms were often contradictory. these dynamics had implications for their sense of belonging in the community and, potentially, for caregivers’ use of cdg funds. discussion early intervention is especially important for children with disabilities or chronically ill children, who may require more extensive health and therapeutic care in their early years (kanji 2021; moodley 2021; sherry 2015; storbeck & moodley 2011). access to this care can have dramatic effects on their long-term development and well-being. some of the caregivers in the study reported on in this article had been directed to apply for a cdg by their child’s treating doctor, either at the point of diagnosis or during a subsequent healthcare appointment. however, as also reported by cdg beneficiary participants in gauteng-based studies (dimhairo 2013; letsie 2016), all but one of the caregivers in this study spent months or even years attempting to gain access, despite being eligible for the cdg. access tended to be ad hoc and reliant on chance meetings with specific individuals, rather than happening along a predictable pathway. late access to the grant had constrained caregiver capacity to seek early intervention for their child with disabilities, which had an impact on their child’s physical or mental well-being and had also been emotionally painful for the parent. some caregivers expressed concerns that they were not given enough information and did not understand their children’s disabilities well enough to support them properly, especially in the earlier years of their children’s lives. the pattern of late and unpredictable access to this critical support has previously been reported in gauteng (dimhairo 2013; letsie 2016) and may be having a deep and as yet insufficiently documented effect on developmental progress and the well-being of both children with disabilities and their caregivers. the pressure on the caregivers in this study was compounded by a lack of acceptance from their social environments. this situation is currently not much changed since swartz (2012:37) reported that ‘[i]gnorance, fear and anxiety, and lack of skill are major issues which affect how able-bodied people at all levels of society interact with disabled people’. caregivers commented specifically on the lack of clarity on the progress of their application and the severity thresholds governing approval and rejection for the cdg during their journey to access. they did not understand how two cdg applicants whose children had the same diagnosis could have different application outcomes. because severity thresholds are not explicitly dictated by sassa, different assessors may apply different thresholds, which can result in variable, uneven inclusion (see kelly 2016b; trafford & swartz 2022, for these discussions on the dg and cdg, respectively). the result is that these processes feel unpredictable to those who most need to understand how to navigate the system and even, in fact, to those who are implementing the assessment system at the frontline. in addition, poor communication and dismissive treatment from sassa officials and assessing doctors can make the process of accessing a cdg feel even more difficult for potential applicants. it is likely that focusing first on improving communication with and customer service for sassa clients would yield more rapid positive results than the recent attempts to move applications online, which could actually serve to further exclude those most disadvantaged by structural inequality. effective improvements to the social assistance system will require much deeper thought about what kinds of limitations already exist and how certain changes may intensify exclusion, even when this is unintentional. as the use of the cdg is not explicitly dictated by sassa and the cash transfer is unconditional, caregivers have some autonomy in choosing how they will spend these funds. this is positive because it allows families whose children have diverse or unexpected needs, as was the case with the parent of an autistic teenager in this study, to make their own financial decisions. however, because of inadequate or inaccessible public service provision, caregivers were regularly forced to spend out-of-pocket on expensive private transport, medications, special foods or other impairment-related products, which rapidly depleted their cdg funds. in addition, many of the mothers in this study had to leave their income-generating work and did not or could not obtain financial support from their children’s fathers. thus, cdg funds were commonly used to support the needs of the whole household, as is common for all of the grants available under sa’s social assistance provisions (granlund & hochfeld 2020; kelly 2016a; kidd et al. 2018; lloyd-sherlock & agrawal 2014). as the caregivers whose narratives are shared in this article were based in peri-urban areas in gauteng and the western cape, the most well-resourced provinces in the country, the situation for caregivers in other provinces and rural contexts is likely to be even more difficult and isolating (duma et al. 2021; modula 2022). the revitalisation of and better linkage to existing services, or the initiation of new services to which these families are legally entitled, would greatly enhance the impact of the grant, allowing it to be more than just a basic survival mechanism. at the very least, as a concession to respite care, there is a strong case for extending the gia to the cdg beneficiary group, which is far smaller than that of the dg, which had around 1.04 million beneficiaries in september 2022. it is not clear why, despite the fact that ‘the opportunity costs are more pronounced in households with children with disabilities compared with families with adults with disabilities’ (unicef/dsd 2015:29), only adults with disabilities can access this support for human resources for care. of course, it would be more sustainable (and likely more beneficial) to improve the availability and quality of complementary social services, rather than simply to offer another cash transfer. one intervention that would alleviate an egregious and avoidable expense would be the provision of disability-friendly transport, especially for access to health and educational services. in the western cape, accessible transport is available through a subsidised service, but respondents reported that the very limited vehicle fleet generally prioritises transporting working-age adults to employment or training opportunities. there is a conspicuous gap for caregivers who require the same for their children with disabilities, which limits their participation in society. however, improving these kinds of services for children with disabilities is likely to take a long time and will require a renewed commitment to important advocacy and research conducted to date. in the meantime, extending eligibility for the gia to include cdg beneficiaries would at least facilitate some additional financial support for these families. reflecting on ‘benign neglect’: why are children with disabilities and their families always at the back of the queue? the concept of ‘benign neglect’ originates from 1970s racialised urban planning in the united states (us). during this period, the us government responded to the deprivation and need in ‘black neighbourhoods’ by neglecting to direct additional resources and services to these areas and allowing their suffering to continue. more recently, the idea has been used to interrogate stilted progress towards racial equity in the quality of healthcare and clinical care for non-hispanic black and hispanic infants in the us (rowley & hogan 2012) and in a critique of sa’s refugee and informal sector policy implementation (crush, skinner & stulgaitis 2017). mcentee-atalianis and vessey provide a definition of benign neglect as ‘inaction or inattention that ultimately benefits some parties and negatively impacts upon others’ (mcentee-atalianis & vessey 2021:4). rowley and hogan (2012) describe benign neglect as ‘a policy or attitude of ignoring a situation instead of assuming responsibility for managing or improving it [which] causes inaction in the face of need’ (p. 83). borrowing from these conceptions, it seems that while it may not be malicious or intentional, the needs of children with disabilities and their families have been systematically and repeatedly deprioritised, resulting in (not so) benign neglect by the south african government. strong rhetorical commitments exist but are not adequately supported by funding, sustained focus and mechanisms for accountability. this may be because there is a perception that it would be overly expensive to do this properly or, more cynically, perhaps the belief that a lack of well-being is inevitable for these families. while research that focuses specifically on the cdg has been limited, patterns of deprivation and inequitable access for children with disabilities and their families, particularly those who are also living in poverty, have been reported since the early 2000s in sa. for example, accessible transport is an ongoing issue that was ‘identified in early research over two decades ago and remains largely unaddressed’ (gibberd & hankwebe 2022:6), an assertion these authors made based on department of transport reports from 1999 and 2020, respectively. similarly, the right to education and adequate healthcare are constitutional entitlements, but because even children without disabilities are often unable to access these rights as a result of similar limitations around public transport and uneven resource distribution, the rights of children with disabilities appear to have been deprioritised (mckenzie & chataika 2017; modula 2022; philpott & mckenzie 2017; philpott & muthukrishna 2019). in this small study, despite respondents’ sons and daughters being born between 1985 and 2013, similar narratives were shared about the difficulties related to infrastructural and systemic constraints and social exclusion. important disability-related policy shifts have occurred in the interim (not least the transition to a democratic government), but practically, little appears to have changed for these children and their caregivers in terms of their day-to-day lives, the cost of living and the emotional strain of living in a society that does not understand or sufficiently provide for their access and participation. the covid-19 pandemic offers two specific illustrations of how this neglect can manifest. in 2018, sassa officials expressed their intention to increase cdg beneficiary numbers by making people aware of the grant through ‘more effective communications’ (kidd et al. 2018:49). there is also strong local and international evidence that children with disabilities experienced particularly intense exclusion during the pandemic (houtrow et al. 2020; mckinney 2021; ned, dube & swartz 2022; patel 2020). despite these indicators of willingness and need, however, recent amendments to the social assistance act were focused on ‘topping up’ the csg, institutionalising the social relief of distress grant (used as emergency relief during the pandemic) and setting up an inspectorate to examine fraud (south african parliament 2020). the amended act did not single out cdg recipients. subsequently, regulations released in may 2022 provided a valuable clarification of the definition of ‘permanent care’ and ‘support services’1 (dsd 2022), terms that have been central to cdg eligibility since the act’s inception in 2004 but which were never formally defined. in addition, periodic reviews of childhood disability (i.e. provision for short-term or temporary cdgs) have been included in a move away from offering only a ‘permanent’ (i.e. until the recipient child turns 18) cdg. however, these shifts appear to be more focused on limiting and gatekeeping access to the cdg, rather than on extending its reach and impact. this may be because sassa’s primary concern appears to be that the cdg is being over-prescribed by assessing doctors and distributed to caregivers for ‘too long’, that is, beyond when a child has ‘grown out of’ their additional support needs (trafford & swartz 2021). no reliable data exists to document cdg exclusion errors, but in a 2017 investigation of the dg (the grant most associated with erroneous or fraudulent access), national inclusion errors were estimated at 8% lower than exclusion errors, at 34% versus 42%, respectively (hanass-hancock & mckenzie 2017:3). even for the dg then, and certainly for the cdg, increasing rather than limiting access should be government’s primary concern. with regard to the cdg specifically, there appears to be no serious investment, political or financial, from government to extend the system around the cdg or to improve how it functions. should further amendments to the social assistance act be made in the coming years, it is important that the focus is on enhancement and inclusion, rather than on strictly policing the boundaries of a grant that the government itself has noted is undersubscribed. the experiences of the pandemic have also revitalised older discussions about and calls for a universal basic income grant to support working-age adults who are without disabilities but are living in a context of excessively high unemployment and highly unequal service delivery (matthews, groenewald & moolman 2022). these are important moves towards raising the standard and quality of life in sa, but there is also a danger that the process may, once again, overshadow the specific experiences and needs of families of children with disabilities, pushing them down to the bottom of the priority list. these grants could be complementary, so if a basic income grant (big) is instituted, it is recommended that cdg beneficiaries ought also to be eligible for this support, as long as they also meet big eligibility requirements. strengths and limitations the key strength of this work is that it adds to a limited evidence base and that this data is being disseminated rapidly. to try to mediate somewhat the limitation introduced by remote data collection, research with caregivers was delayed as long as possible and arrangements were made to speak with all caregivers who responded to recruitment calls, resulting in a relatively small and nongeneralisable sample. however, the intention of this research was not to obtain national representation but rather to gain a deeper understanding of specific feelings about the cdg, as well as what was happening in the participants’ lives and what mattered most to them. conducting idis online also presented the possibility of an additional barrier between participant and researcher. this may indeed have added some distance between us, but it also meant that participants could choose to do these interviews from their own homes and at a time that suited them, rather than being limited by the times available at a rented venue. doing these interviews at home may also have made participants less candid, for fear of being overheard by family. however, two of the idi participants explicitly noted that this was valuable for them because they could be with or in the vicinity of their child, decreasing the stress of worrying how their child might be feeling or if they needed something during the interviews. informal conversations with all participants before and after data collection also helped to build rapport and improve insight into their lives. conclusion while sa’s social assistance provisions are among the strongest when compared with regional neighbours and similar economies (kidd et al. 2018), they are considerably weakened by the lack of attention to high-quality accessible public services (matthews et al. 2022), particularly for the population with disabilities. as hanass-hancock and mckenzie (2017:9) argue, it is important to ask if sa’s disability-related grants are intended as a poverty alleviation mechanism or as one aspect of a social protection system aimed at facilitating the equal participation and improved well-being of children and adults with disabilities. a society-wide approach should be urgently initiated to emphasise disability inclusivity and to strengthen the implementation of existing guidelines and policies designed to uplift children with disabilities (makwela & smit 2022; sadiki 2022). the re-education of the non-disabled public at all levels is part of this process, but it is also critical that the visibility of children and adults with disabilities is increased and the issues that are important to them are amplified (duma et al. 2021; swartz 2012). more opportunities should be made available for caregivers to share their narratives and have them taken seriously by government (pitasse fragoso 2022; pitasse fragoso & lippmann 2020). south africa has a long history of advocacy that has yielded positive change for groups oppressed because of racism, homophobia or stigmatisation as a result of association with an infectious disease. programmes aimed at health and social workers, the public media and government officials have set a successful precedent. the country could build on this tradition to improve the inclusion of people with disabilities, throughout the life-course, beginning with children with disabilities and their families. to close, this study echoes dimhairo’s (2013) conclusion, made almost a decade ago, that: [c]hildren with disabilities – and those caring for them – are disadvantaged in quite intricate ways and that only a more rigorous and socially sensitive design of the care dependency grant can ameliorate such disadvantage. (p. v) legislative changes are important, but on their own they do not represent any significant revision of a system that is functioning poorly. interpersonal (and interdepartmental) relationships, organisational resourcing and ableism have a profound effect on policy implementation (hoag 2010; evans 2016; lipsky 2010; nothdurfter & hermans 2018), and these dynamics must be better understood. a coherent and cohesive strategy must be designed that properly acknowledges and accounts for the actual circumstances that these caregivers are facing and goes far beyond just poverty alleviation. this shift would bring the country better into alignment with its regional and international obligations towards people with disabilities; the scaffolding is there, but there is still much work to be done. otherwise, the cdg will continue to serve as just a stop-gap survival mechanism, insufficient on its own for meeting sa’s expressed commitment to providing a comprehensive social protection system for children with disabilities and their caregivers. acknowledgements the author would like to thank all of the participating caregivers who gave generously of their time and shared their personal stories so openly. the author would also like to thank her supervisor, professor leslie swartz, who provided guidance throughout the planning, implementation and write-up of all stages of this study, and also commented on the penultimate and final drafts of this article. competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. author’s contributions z.t. is the sole author and conducted all design, data collection and transcription for, and analysis and write-up of, the manuscript. funding information this work was supported by the wellcome trust (grant no. 217821/z/19/z). data availability the data that support the findings of this study are available on request from the author, z.t. the 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africa & unicef, pretoria, viewed 28 november 2021, from https://www.unicef.org/southafrica/reports/elements-financial-and-economic-costs-disability-households-south-africa. white, h., saran, a., polack, s. & kuper, h., 2018, rapid evidence assessment of ‘what works’ to improve social inclusion and empowerment for people with disabilities in lowand middle-income countries, campbell collaboration, new delhi. zembe-mkabile, w., surrender, r., sanders, d., jackson, d. & doherty, t., 2015, ‘the experience of cash transfers in alleviating childhood poverty in south africa: mothers’ experiences of the child support grant’, global public health 10(7), 834–851. https://doi.org/10.1080/17441692.2015.1007471 footnote 1. according to these regulations, ‘“permanent care” means caring for a care dependent child … on a 24-hour basis by (a) a primary care giver; (b) a foster parent; or (c) a parent’, while ‘“support services” means [sic] (a) a day care facility; (b) a stimulation centre; (c) early childhood development services for children with disabilities; or (d) schools for learners with special education needs’ (dsd 2022:9–11). abstract introduction methodology results discussion conclusion acknowledgements references appendix 1 appendix 2 about the author(s) toughieda elloker department of physiotherapy, university of the western cape, south africa anthea j. rhoda faculty of community and health sciences, university of the western cape, south africa citation elloker, t. & rhoda, a.j., 2018, ‘the relationship between social support and participation in stroke: a systematic review’, african journal of disability 7(0), a357. https://doi.org/10.4102/ajod.v7i0.357 review article the relationship between social support and participation in stroke: a systematic review toughieda elloker, anthea j. rhoda received: 13 dec. 2016; accepted: 21 june 2018; published: 10 oct. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the incidence of cerebrovascular accidents with its devastating effects on individuals is increasing. post-stroke, restrictions in participation are common and social support could have an influence on this. social support provided to individuals post-stroke is vital, but the relationship between social support and participation is not well understood. objectives: this review aimed to systematically determine the relationship between social support and participation post-stroke, based on the literature available. method: ebscohost, science direct, biomed central, cochrane library, google scholar, pedro central and wiley online were the electronic databases searched between 2001 and 2016. articles were deemed to be eligible if they met the inclusion criteria and successfully underwent scrutiny to determine their relevance and methodological quality, using tools from the critical appraisal skills programme and milton keynes primary trust. a narrative synthesis method was used to analyse the included studies. results: a total of 54 articles were identified after screening, and six articles were deemed eligible for inclusion. the articles consisted of cross-sectional, qualitative and cohort studies. articles showed distinct, significant relationships between social support and participation where the quality and quantity of social support were important. high levels of social support had a positive influence on participation, social and leisure activities, as well as returning to work post-stroke. conclusion: a positive relationship exists between social support and participation post-stroke. health professionals need to include social support interventions when attempting to manage the individual with stroke holistically, as this will have positive effects on participation. introduction cerebrovascular accidents or stroke remain a leading cause of death and disability in south africa (bryer et al. 2011) and the incidence is increasing. after suffering from a stroke, the body structures and functions become impaired and, as a result, the individual might experience difficulties in performing basic activities of daily living (adls). restrictions in participation have also been reported (maleka et al. 2012; rouillard et al. 2012; rhoda et al. 2015), regardless of stroke severity (wolf & koster 2013). participation is a concept defined as an individual’s involvement in life situations which include meaningful activity, community, family, work, social and civic life (world health organization 2001), and restrictions in these domains have been documented (wolf & koster 2013). according to a recent study, two fundamental principles of participation include social engagement (with family and friends) and aspects of self-care (activities to maintain health) (resnik et al. 2012). although these factors have been identified as principles of participation, they have also been found to influence participation (geyh et al. 2004; wolf & koster 2013). these facets are further classified within the international classification of functioning, disability and health (icf) as environmental factors and activity limitations, respectively (who 2001). this framework is directed at reflecting the dynamic collaboration between the domains of activity, participation and environmental factors such as social support, while describing participation as being influenced by them (fallahpour et al. 2011). as a result of the impairment following stroke, some individuals may be unable to return to their pre-stroke activities and roles, and often have to depend on friends and family for support. this can become challenging, as these relationships are often adversely affected (o’sullivan & chard 2010). in the attempt to support individuals with stroke to return to their previous functioning, it is necessary to consider the social support structures available to them. the term social support has been considered in studies of health and well-being since the early 1970s (tsouna-hadjis et al. 2000), and is defined as ‘the availability or provision of a relationship, information or assistance that empower a person to manage their day to day life effectively in the presence or absence of crisis’ (newsham 1998, cited in beckley 2006:126). known as a multi-faceted concept, social support can be categorised into three different elements (fallatah & edge 2015). emotional support refers to caring, acceptance and listening, instrumental support entails practical help from some other person, while informational support includes the provision of knowledge to help solve practical problems (wills & shinar 2000). collectively, these elements can be referred to as the quality of social support (glass & maddox 1992). the number of persons in a support network and the amount of time invested by this network, as well as the frequency of availability of social support, is defined as the quantity of social support (glass et al. 1993; tsouna-hadjis et al. 2000). while all three types of support were shown to improve function (glass & maddox 1992), a high level of instrumental support has a positive impact on social (social involvement) and functional status (adls), while a high magnitude of emotional support has a profound effect on patients’ psychosocial health (depression) (tsouna-hadjis et al. 2000). in addition, a large amount of social support has been shown to provide a quicker and more extensive recovery of function in adls (glass et al. 1993). the effects of social support on improved functional recovery and psychosocial health are clearly outlined in the literature above. with regard to participation, beckley (2006) found that social support moderates the effect of functional limitations on participation. the evidence for social support stems from the study’s conclusion that improvements in both functional limitation and participation restrictions are dependent on social support. the study findings stress that the levels of subjective social support result in improved functional status. the level of subjective social support could reflect the amounts of support reported by participants. this, in turn, can improve participation. this study did not directly measure social support and its influence on participation. if participation was included as an outcome measure, the conclusion with regard to the relationship between social support and participation would be better understood. there is existing literature that directly examines the relationship between social support and participation (mayo et al. 2013). however, this literature is minimal, especially in the developed world. the purpose of conducting this review was to discover all studies that show a direct link between the two variables. the evidence for this relationship has not been systematically presented and, as a result, this relationship is not clearly understood, which explains the rationale for this review. this review aims to systematically identify the relationship between social support and participation in individuals living with stroke. the research question this review intends to answer is: in community-dwelling individuals with stroke, what is the relationship between social support and participation post-stroke? methodology a systematic approach to conducting the review was adopted. this review is in compliance with the preferred reporting items for systematic reviews and meta-analysis (prisma) guidelines (moher et al. 2009) and was also registered with prospero (registration number: crd42018086142). the online supplementary material can be accessed at http://www.crd.york.ac.uk/prospero/displayrecord.php?id=crd42018086142. search strategy the databases of ebscohost full-text, which included cinahl +, health source: nursing, academic edition, medline, psych articles and soc. index, science direct, biomed central, google scholar, cochrane library, pedro central and wiley online, were searched to access articles published between january 2001 and october 2016. these databases were accessed from the university library, under the advice and supervision of an expert librarian. the year 2001 was chosen as a starting point as it coincides with the publication of the revised international classification of impairment, disability and handicap (icidh). in the icf, the concept of participation could be seen to replace handicap, and includes the influence of contextual factors on disability. the same key search terms were used for all databases with boolean operators such as ‘and’ and ‘or’. the electronic search was conducted using the pubmed search builder. the key terms used were social support and (participation or participation restrictions) and (stroke or cva) and (recovery or rehabilitation). the same approach was used for all searches but was adapted as necessary according to the database. medical subject headings (mesh) terms were used in databases that made use of that function. search limiters were applied to include only full-text, english articles, published in peer-reviewed journals on human subjects, published in the years of interest. eligibility criteria articles were deemed to be eligible if they met the inclusion criteria, successfully underwent scrutiny via the population, intervention, comparison and outcome (pico) method, and obtained a moderate score (see appendix 1) for their quality assessment. the following inclusion criteria were used: individuals with a primary diagnosis of stroke individuals with stroke who were community dwelling studies that measured at least one domain of participation as identified by the icf, and one dimension of social support studies that used the icf as a framework to link participation restrictions and environmental factors such as social support any article, the outcomes of which measured both participation and social support, not necessarily measuring the relationship between the two any study designs intervention-based studies where a social support intervention is compared with normal care availability of the english full-text version of the publication articles published in a peer-reviewed journal. articles were excluded if the stated criteria were not met. population, intervention, comparison and outcome articles were screened initially by reviewing titles and abstracts. selected articles then underwent review using the pico method. the term pico is described as population, intervention, comparison and outcome (appendix 1). the relevance of the articles during the pico process was reviewed by two independent reviewers. where consensus was not reached, reviewers discussed the differences in opinion and came to a unanimous decision. the articles that were found relevant for inclusion, following analysis via the pico method, were then subject to undergoing the methodological quality assessment. quality assessment the critical appraisal skills programme (casp 1994) and milton keynes primary trust (2002) were the tools used to assess the articles’ methodological quality which includes a risk of bias assessment. this was conducted by two independent reviewers who were required to score each article. each tool consisted of 10–12 questions, two of which were screening questions that did not impact the final scoring. the remaining questions were more detailed and had guidelines for the authors to assess the questions critically. both tools assessed each article in terms of sampling, outcome measures, data collection procedure, analysis of data, precision of results and study findings. more specifically, the risk of bias was determined by assessing whether the outcome was measured subjectively or objectively, and if it had been validated. the rigour of the methodology was assessed by looking at the setting for data collection, whether the data collection methods were clear, if the researcher had justified the methods and whether the methods were explained explicitly. appendix 2 is an example of the casp cross-sectional tool used to measure the quality assessment of the cross-sectional studies. articles that scored between 8 and 10/10 were viewed as having a high score, 5 and 7/10 a moderate score and 1 and 4/10 a poor score (kumerenzi et al. 2010). the articles that scored five and above out of 10 were included in this review. the data extraction tool a data extraction tool was developed based on the literature from kumerenzi et al. (2010). the data gathered from the extraction tool included but were not limited to: author(s) name(s), country, participant demographic details, study design, data collection instrument, outcomes measured and the results of the study. data analysis a narrative synthesis was used to analyse the data obtained from the included studies. this method of data analysis is usually used to synthesise data gathered from a wide range of study designs, which rely on the use of words and texts to explain and summarise findings (popay et al. 2006). this process includes developing a theory for how the interventions work, examining the study findings systematically, exploring relationships in the data between studies and assessing the amount and quality of the evidence (ryan 2013). results a total of 502 articles were generated from the databases from the first hit of the key terms and the mesh terms. google scholar was accessed to identify grey literature and generated a further 1530 hits. following the application of the inclusion criteria to the titles, 1057 duplicates were removed and 920 articles were excluded. a further 83 articles were excluded after screening abstracts. to determine the eligibility of the remaining 54 studies, the pico method and inclusion criteria were applied to each article. no randomised control trials (rcts) were identified, so all articles had no intervention and comparison groups. after the two assessors conducted the pico and quality assessment, a total of six articles were included. the reasons for excluding the 48 articles are presented in figure 1, along with the study selection. matters discussed amongst assessors included articles which measured participation and included aspects of social support, although dimensions of social support were not measured. the term social participation in relation to social support was also discussed. the use of an independent third party was not necessary, as the two primary assessors were able to reach consensus regarding all articles. figure 1: flow diagram of study selection. characteristics of included studies beckley (2007) and vincent-onabajo et al. (2016) reported on social support and its effect on participation, while choi et al. (2015) conducted a path analysis to determine psychosocial predictors of participation restrictions post-stroke. two cohorts were identified by mayo et al. (2013) and norlander et al. (2016). mayo et al. (2013) assessed participation and its influence on walking capacity, mood and social support post-stroke and norlander et al. (2016) identified factors that predict social and leisure activities at 16 months and 10 years post-stroke onset. the qualitative study by sumathipala et al. (2011) reported on how contextual factors identified by the icf influenced long-term needs after stroke. table 1 provides more information on these articles. table 1: articles that were reviewed and met the criteria for the study. quality assessment the casp appraisal tools for qualitative and cohort studies were utilised (akobeng 2005; critical appraisal skills programme 1994), while the milton keynes primary trust for cross-sectional studies was used for the cross-sectional study (milton keynes primary trust 2002). all six articles were included in this review, as they obtained moderate-high scores for their quality assessment, representing a low risk of bias. the scores below represent the unanimous scores of both reviewers (see table 2). table 2: quality assessment scores. demographic characteristics an overview of the participant demographics for each article is tabulated below (see table 3). table 3: demographic characteristics. outcome measures two of the studies identified utilised the icf framework to categorise participation and social support and, as such, did not measure these variables specifically but made use of topic guides (sumathipala et al. 2011) and measures of social and leisure activities (norlander et al. 2016). the remaining articles included outcomes of both participation and social support. the four articles used different self-reported measures of participation. however, all measures comprised surveys in which participants were instructed to rate their responses on a 5-point likert scale. this was performed at 3–6 months post-hospital discharge (beckley 2007), 12 months post-stroke (choi et al. 2015), and at 3, 6, 9 and 12 months post-stroke (mayo et al. 2013). vincent-onabajo et al. (2016) measured participation in six domains, namely: mobility, physical independence, social integration, occupation, orientation and economic self-sufficiency. although the articles utilised validated measures, there was a risk of response bias because these measures were self-reported. with regard to social support, beckley (2007) measured the quality and quantity of social support received from family, friends, community individuals, community groups and professionals. choi et al. (2015) measured emotional and informational support and mayo et al. (2013) measured the extent of participants’ social network, while vincent-onabajo et al. (2016) measured the social support received from three sources, namely family, friends and significant others. social support domains quality of social support the quality of social support plays a significant role in participation (p = 0.03) at 3–6 months post-stroke, explaining 31% of the variance (r2 of 0.31) (beckley 2007). seventy-five per cent of participants gained emotional support from family and friends post-stroke, which played a vital role in participants’ functioning, thereby improving their participation (sumathipala et al. 2011). the instrumental support received from participants’ spouses or other family members was of assistance with adls. subjectively, participants conveyed that they had always received more support from family and friends than was needed, even prior to the stroke (beckley 2007). an elderly participant in the study conducted by sumathipala et al. (2011) explained how the support she received from her family was not only practical, but lessened the pressure of managing her daily activities, which included providing her with transportation. this type of support aided her participation. she suffered a stroke 11 years ago, and still refers to these family members as ‘gems’. in this study, participants expressed that the support provided was more beneficial when it was based on need (sumathipala et al. 2011). quantity of social support the quantity of social support plays a significant role in participation (p = 0.004) at 3–6 months post-stroke, explaining 35% of the variance (r2 of 0.35) (beckley 2007). in this study, participation was the dependent variable and was measured by using a questionnaire asking participants how they managed in their homes, in the community, participating in meaningful and social activities and dealing with life events. the extent of social networks had a significant effect on social and leisure activities 10 years post-stroke (β = 1.235; p = 0.004) (norlander et al. 2016). participants’ extensive support network can be explained by 93.1% having a particular person in their lives on whom they could depend, 63.4% engaging socially in the community every week, 33.3% having five different sources of social contact outside the household and 75.2% living with a partner or other(s). this was reported for the majority of participants and, as a result, social and leisure activities improved (p = 0.004). of the three variables mentioned above, the number of sources of social contact was the only factor found to be significant (r = 0.369; p < 0.001) in predicting social and leisure activities. individuals who had high levels of social support prior to their stroke experienced greater social support initially post-stroke but, as time passed, a drop in social support levels was noticed, followed by a slow increase in support. even after the drop and slow increase in social support, these individuals were still classified as having excellent social support, obtaining scores of above 80% (mayo et al. 2013). the relationship between social support and participation a recent study conducted in nigeria found correlations between social support and overall participation (p < 0.05). linear regression was applied and social support had a significant effect on the economic self-sufficiency domain of participation (p < 0.0001; r2 = 0.57). social support had no significant and independent impact on overall participation in community-dwelling individuals post-stroke (β = 0.08; r2 = 0.57) (vincent-onabajo et al. 2016). sumathipala et al. (2011) reported that 74.0% of participants found that support from friends and family was a key facilitator towards functioning, which had shielded them from the impact of disability. in a few cases (8.0%) where support from family members was not guaranteed for the future, this resulted in poor participation. in addition, three participants had moved to houses that were closer to their friends and families to access the support they required to participate in activities. beckley (2007) found that as an individual’s independence decreases, their participation increases and the same applies to the reverse situation. as subjective social support increases, the estimate of functional limitation increases significantly (p = 0.003). a similar link was reported by choi et al. (2015) where psychological factors mediated the relationship between social support and participation, that is, an increase in social support improved psychological well-being which positively affects participation. psychological factors, as defined by the author, include depression, self-esteem and hopeful thinking. therefore, social support had an indirect effect on participation post-stroke (β = -0.23; p = 0.01) via psychological factors (β = 0.50; p = 0.01). in the process of determining the relationship between social support and participation post-stroke, mayo et al. (2013) divided participants into categories based on the amounts of support they received. social support was self-measured, which entailed five questions on the extent of participants’ social network. participants (11.4%) scored support levels between 20 and 55 of the maximum (100) value and were classified as having poor social support, 52.4% of the sample scored between 60 and 70 of the maximum value and were classified as having fair social support, a further 26.4% of participants scored values of 80 and were classified as having very good social support, while the remaining 10.0% scored above 80.0% and were classified as having excellent social support. fifty-six per cent of participants in the very good social support group had excellent levels of participation; a further 71.0% of the sample, classified as having poor social support, experienced poor participation. discussion the articles identified in this review stipulated distinct relationships between social support and participation where the quantity had a greater impact than the quality of support. this was a finding at 3–6 months post-stroke. it is important to consider the stage of recovery post-stroke. in the acute phase, individuals required large amounts of support to cope with the burden of disability, which would explain the above result (beckley 2007). individuals with limited support who needed to be able to return home post-stroke would then find the demands of returning to their pre-stroke roles challenging. it is important to note that social support as reported in this article is applicable to those individuals in community contexts. the results demonstrate that the quality of support is generally provided over a long term, prior to the disability and maintained post-disability (beckley 2007). the explanation for this can be threefold. firstly, the presence of co-morbidities could be a confounding variable, which would explain why participants required support prior to the stroke. participants in this review have been described as people with a primary diagnosis of stroke. the authors from the reviewed papers failed to mention participants’ medical histories, specifically with regard to co-morbidities. this cannot be overlooked as more than 50% of strokes in south africa can be attributed to co-morbidities, including hypertension (bertram et al. 2013). secondly, the mean age of participants from the reviewed studies ranged from 53.67 to < 75 years. older individuals have a greater need for social support which could lead to the need for care prior to the stroke. social support provided prior to the stroke could have been related to the relationships within the specific families (beckley 2007). lastly, the support rendered might not have been based on need, as identified by beckley (2007). the benefits of support provided were clearly highlighted by sumathipala et al. (2011), because the ability of an individual to perform activities independently would aid in participation, more than having people in a person’s life that can assist with certain activities (beckley 2007). this implies that the support provided should be based on the needs of the individual and dependent on the profile of the individual, concurrent with previous literature (haun, rittman & sberna 2008). it is suspected that individuals with close personal relationships receive more assistance than those without. this was reiterated by participants who expressed the amounts of support received from others (beckley 2007). this echoes the extent of participants’ social support network, a topic that has been discussed in the literature (haun et al. 2008). maintaining a strong social support system has been found crucial to improving quality of life (qol) post-stroke (boden-albala et al. 2005; glass & maddox 1992). more specifically, at 10 years post-stroke, the quantity of social support and extent of support networks are directly linked to positive outcomes in participation, a finding from this review (norlander et al. 2016). in addition, recent literature has revealed that an extensive support network aids return to work (rtw) post-stroke (wang, kapellusch & garg 2014). a very small proportion of participants (34%) was employed at the time of their stroke. in south africa, there is minimal literature available on rtw intervention platforms for individuals with stroke (ntsiea et al. 2015), so this information could be useful to plan rehabilitation strategies to facilitate rtw. an interesting finding was observed in the study by mayo et al. (2013), which reiterated the importance of an extensive support network. the inconsistencies in participants’ support noted, after the initial phases, could have affected their participation in a negative way had it not been for the large amounts of support received. the studies conducted by beckley (2007) and choi et al. (2015) show the indirect effect that social support has on participation via other variables. this demonstrates the profound effect that physical impairment and depression has on participation, a finding in line with previous literature (maleka et al. 2012; mayo et al. 2013). vincent-onabajo et al. (2016) found that higher levels of social support were linked to better participation in relation to economic self-sufficiency. to be economically self-sufficient entails the maintenance of income to achieve basic needs. the authors suspect that this result was achieved because support was being rendered financially. this could be linked to the low rate of occupational participation in the study, a result found in a number of reviewed studies as well. the mean age of participants across the studies also needs to be taken into consideration, as the majority of participants in the studies could be retirees. the remaining studies provide evidence on the direct effect of social support on participation post-stroke, where high levels of social support improve participation (beckley 2007; mayo et al. 2013). the same applies to the reverse situation, where participants who experienced limited support from family reported difficulties with participation (sumathipala et al. 2011). these results are seen up to 10 years post-stroke, as identified by a cohort (norlander et al. 2016). a strength identified by sumathipala et al. (2011) and norlander et al. (2016) was using the icf as a framework to examine contextual factors related to stroke. these studies have also contributed significantly to the development of the icf. although mayo et al. (2013) and norlander et al. (2016) utilised the same study design, their methodologies were different and, as a result, analysing them together was challenging. the studies identified cannot be generalised because of the small sample size and excluding participants with severe cognitive defects. a recent south african study found that 46% of participants reported mild-moderate cognitive impairment post-stroke, which affected their qol (arowoiya et al. 2017). cognitive impairments have also been found to influence participation in leisure activities and employment (pinquart & sorensen 2006). in their attempt to include participants with cognitive impairment, norlander et al. (2016) utilised proxy respondents, which could have affected the results. at the other end of the spectrum, these results could be generalised to the cognitively impaired population. conclusion this review produced six articles that showed significant relationships between social support and participation post-stroke. important aspects to consider with regard to social support are the quality, quantity and timing of support. the results illustrate that for the quantity of social support to have a significant effect on participation, the support needs to be established prior to the stroke. this support would be beneficial if it was provided in generous quantities so that when there is a decrease in support levels after the stroke, the individual would only be mildly affected. a finding from this review is that for the quality of social support to have positive outcomes on participation post-stroke, it needs to be based on the requirements of the individual concerned, who values the emotional and instrumental support received. this review further highlighted the influence of physical impairment and altered mental status on participation, as well as rtw post-stroke. the icf framework has been found to be effective in analysing participation restrictions and environmental factors linked to social support. implications for practice it is clear that social support is a vital factor to consider when managing the individual with stroke holistically, which includes planning rehabilitation interventions. this information is particularly important to allied health professionals working in the clinical setting. a theme that emerged from this review was the importance of an individual’s quantities of support and the extent of support networks. to address this, rehabilitation strategies and interventions could focus on incorporating group activities. social support interventions would aid the re-integration of individuals back into the community. interventions should include group sessions with family members and caregivers, where the focus should be on assisting individuals to gain independence. outdoor activities with support structures should be encouraged, to aid social support and participation in the community. a finding from this review is that physical impairment is significantly related to reduced participation. it is vital for healthcare policies to consider community access support and mobility aids, including the provision of transport for individuals with disabilities, to allow them to function optimally in the community. these should be easily accessible and affordable. future studies should be conducted in the form of rcts, as none were identified on the topic in question. social support should be measured as a multidimensional concept to include all aspects. limitations of the study this review is not a complete representation of the available literature, as only english-text articles were used from distinct databases at a single institution; thus, publication bias could be present. only self-reported measured were utilised as outcomes in the reviewed studies which could present response bias. another limitation was that no rcts were found resulting in the inclusion of lower levels of evidence. in addition, all types of study designs were utilised, making the comparison of articles a challenging exercise. acknowledgements the authors wish to acknowledge the national research fund (nrf) for their financial assistance. the views expressed by the authors are not necessarily the views of the nrf. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.e. was the msc student for the project, and a.r. was the supervisor. t.e. conducted the primary search for articles included in this review, under the supervision of a.r. both authors reviewed the articles independently with regard to 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international classification of functioning, disability and health: icf, world health organization, geneva. appendix 1 table 1-a1: pico analysis. appendix 2 table 1-a2: quality assessment tool for cross-sectional studies. abstract introduction research methods and design results discussion limitations conclusion acknowledgements references about the author(s) ilhaam hoosen department of occupational therapy, faculty of health sciences, school of therapeutic sciences, university of the witwatersrand, johannesburg, south africa fiona breytenbach department of occupational therapy, faculty of health sciences, school of therapeutic sciences, university of the witwatersrand, johannesburg, south africa janine van der linde department of occupational therapy, faculty of health sciences, school of therapeutic sciences, university of the witwatersrand, johannesburg, south africa citation hoosen, i., breytenbach, f. & van der linde, j., 2024, ‘healthcare transition practices of occupational therapists in south african public healthcare’, african journal of disability 13(0), a1413. https://doi.org/10.4102/ajod.v13i0.1413 original research healthcare transition practices of occupational therapists in south african public healthcare ilhaam hoosen, fiona breytenbach, janine van der linde received: 22 feb. 2024; accepted: 28 may 2024; published: 29 aug. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: healthcare transition (hct), the process of transitioning an adolescent from paediatricto adult-oriented care, is vital for improving the long-term health of adolescents with chronic conditions. the role of occupational therapy in hct has not been well-researched. effective hct practices are necessary to ensure that adolescents have access to coordinated, optimal and uninterrupted occupational therapy services throughout this period of development. objectives: this study describes occupational therapists’ self-perceived knowledge of hct within the context of south african public health facilities, the hct practices used, and the factors that promote or hinder the success of hct within this context. method: the study utilised a quantitative, non-experimental and descriptive cross-sectional design. simple convenience and snowball sampling were used to recruit participants via professional databases and social media forums. an online survey was used to collect data. descriptive statistics and simple content analysis were used to analyse the information. results: this study identifies limitations in the knowledge and practical implementation of hct within south african occupational therapy practice. healthcare transition is characterised by inadequate use of policies, insufficient transition preparation and poor outcome measurements. conclusion: there is a need for the development of training programmes and practice guidelines to optimise and support hct implementation within south african occupational therapy practice. contribution: this study provides novel data on hct practices utilised by occupational therapists in south african public health facilities. this study has potential use for the development of effective hct programmes that can improve the functional outcomes of south african adolescents. keywords: healthcare transition; adolescence; occupational therapy; paediatric to adult healthcare; hct. introduction healthcare transition (hct) is a critical, but often neglected, process that is integral to ensuring the continuity of healthcare services between childhood and adulthood. healthcare transition is the process of transferring an adolescent from child-oriented to adult-oriented healthcare in an uninterrupted, developmentally appropriate and coordinated manner (blum et al. 1993; hasegawa & gleeson 2018). adolescents with chronic illnesses or functional limitations may experience difficulty in transitioning from paediatric to adult healthcare services because of differences in services and reduced support from healthcare professionals that occur during the transition (castillo & kitsos 2017). for this reason, a structured hct process is necessary. the process of hct bridges the gap between supervised, family-centred paediatric-oriented care, to an adult-centred model in which the adolescent has increased autonomy. this process may or may not involve a change in healthcare provider. the success of the transition is vital for the optimal, long-term health of adolescents (gabriel et al. 2017) and is therefore a staggered process. healthcare transition is a long-term process that includes three main phases: transition preparation or planning, transfer from paediatric to adult-oriented care and integration into adult care (white & cooley 2018). healthcare transition is initiated at different times for different individuals and progresses in accordance with the adolescent’s context, level of development, health condition and personal characteristics (castillo & kitsos 2017; hasegawa & gleeson 2018; hobart & phan 2019). healthcare transition is also an active process where healthcare professionals should continuously collaborate and negotiate with adolescents, caregivers and other healthcare professionals to provide appropriate support and health services throughout the hct process (white & cooley 2018). emerging studies on hct indicate many challenges experienced throughout the process, both globally and in africa (abaka & nutor 2021; betz et al. 2013; kung et al. 2016; mbalinda et al. 2021; westwood, langerak & fieggen 2014; zanoni et al. 2020). in africa, some studies indicate that the transition of many adolescents to adult-oriented care remains an age-related abrupt shift with adolescents feeling insufficiently prepared for the demands of adult-oriented healthcare (abaka & nutor 2021; mbalinda et al. 2021; westwood et al. 2014; zanoni et al. 2020). other studies indicate that clinicians have begun to apply more stringent clinical reasoning to the transition process, including identifying transition readiness and providing counselling and education (haghighat et al. 2019; zanoni et al. 2021). limited research is available on current hct practices used in occupational therapy when transitioning service-users from paediatricto adult-oriented care. existing hct models and guidelines have been developed in other health fields, predominantly in medicine (hobart & phan 2019; kerin, lynch & mcnicholas 2020; pierce, hossain & gannon 2020; ritchwood et al. 2020). the role of occupational therapy in hct, as well as current occupational therapy hct practices and challenges, is not well documented. occupational therapy plays a vital role in facilitating the functional independence of adolescents with special health needs as they transition from childhood roles to adult roles, thereby ensuring they are able to make a meaningful contribution to their society (clarkson, boshoff & kernot 2021; levanon-erez et al. 2017; toska et al. 2019). occupational therapy also has a significant role to play in fostering the development of autonomy and self-management skills in adolescents with physical or intellectual disabilities, so that they are better able to manage their health needs as they enter adulthood (american occupational therapy association 2020). occupational therapists are thus well positioned to coordinate the hct process and ensure adolescents are adequately prepared for meeting the demands of adult roles, including health management. for this reason, the development of an effective hct process is important in the management of adolescents within occupational therapy services. this study aims to discuss current hct perceptions and practices within south african occupational therapy services and evaluate these against hct literature and best practice guidelines. this process is essential to ensure consistent delivery of quality health services (esposito 2014). research methods and design study design the study follows a quantitative, non-experimental and descriptive cross-sectional survey design (cresswell & cresswell 2018). population and sampling the research population consisted of occupational therapists currently working in south african public health facilities. public healthcare in south africa is government-funded, available to all citizens and utilised by the majority (83.8%) of the population (maphumulo & bhengu 2019). the public healthcare system has three levels of healthcare: tertiary specialised hospitals located in major cities, secondary provincial and district hospitals, and local primary healthcare centres (maphumulo & bhengu 2019). the number of occupational therapists currently involved in hct within south african public health facilities is unknown because of the absence of prior studies. hence, the full cohort of occupational therapists in public health facilities were invited to participate in the study. the total number of occupational therapists in independent practice within the public healthcare sector was estimated at 1220 using available data (health professions council of south africa [hpcsa] 2021; ned, cloete & mji 2017; occupational therapy association of south africa [otasa] 2021). a combination of simple convenience and snowball sampling was used to recruit participants via the otasa, rural rehab south africa (ruresa), the ‘ot tree’ a local email networkand social media-based occupational therapy forums. inclusion criteria and sample composition the inclusion criteria were occupational therapists currently working in south african public health facilities, registered with the hpcsa as independent practitioners, with a minimum 1 year of working experience in a public health facility. according to the hpcsa annual report 2020/2021, 5876 occupational therapists were registered with the hpcsa in 2021 (hpcsa 2021). of these, 25.2% were expected to be practising in public healthcare (ned et al. 2020). using these figures, around 1480 occupational therapists can be identified as practising in public healthcare. as the number of public healthcare posts tends to remain the same or decrease because of the freezing of posts (ned et al. 2020), it is assumed that the number of occupational therapists in public hospitals would not have increased substantially since 2021. by excluding community service occupational therapists, who are approximately 260 graduates per year (world federation of occupational therapists 2020), the total number of occupational therapists in independent practice within public healthcare can be estimated at 1220. many registered professionals may not be practising in south africa currently as they may have emigrated abroad but elected to retain their hpcsa membership (ned et al. 2020). this may mean that the actual population of actively practising south african occupational therapists is significantly lower. according to cochran’s sample size formula for categorical data, with an estimated maximum population of 1220 occupational therapists working in public hospitals in south africa, an alpha level of 0.025 and a margin of error of 0.05, the estimated minimum returned sample size was 278 participants (bartlett, kotrlik & higgins 2001). data collection data were collected through an online survey administered using research electronic data capture (redcap®), an electronic data capture tool (harris et al. 2009, 2019). the steps outlined by polit and yang (2016), as well as existing literature, were used in the design of the survey. the survey was piloted with five occupational therapists who met the inclusion criteria of the study and had over 10 years of experience in a public healthcare facility. based on the content validity scores, the survey was adapted for gathering valid data. the finalised survey was administered online via redcap® (harris et al. 2009, 2019) between january and july 2023. participants were able to access the survey questionnaire using a digital link that was propagated through the otasa, ruresa and ot tree networks, as well as through occupational therapy social media groups. the protection of private information act and the hpcsa general ethical guidelines for health researchers guided the management of data (hpcsa 2016; south african government 2013). survey responses were anonymous and collected no identifiable information. data were collected and stored electronically via redcap®, which is an online, access-controlled cloud-based platform hosted by the university, which provided ethical approval. raw data were not stored on any hard drives because of the risk of loss, theft or damage. data analysis simple descriptive statistics methods were used to analyse the information. conventional content analysis was used to analyse open-ended questions. answers were categorised and represented in terms of the frequency of identified themes. all data were represented graphically and thereafter analysed in relation to existing literature and published best practice guidelines on hct (american occupational therapy association 2018; hpcsa 2020; world health organization 2020). rigour of the study the accuracy of the self-developed survey was assessed by piloting the instrument to establish content validity (cresswell & cresswell 2018; polit & yang 2016), as well as through using literature as the basis for the development of the tool. the content validity scores strengthened the validity of the final questionnaire. the guidelines outlined by polit, beck and owen (2007) were used to determine criteria for retention, revision or elimination based on item-level content validity index (i-cvi) scores. items with an i-cvi score of below 0.99 were revised, but as none were below 0.78, no items were eliminated based on i-cvi scores. the scale-level content validity index (s-cvi/ave) was 0.99, which is interpreted as excellent (polit et al. 2007). because there was a potential for social desirability response bias within this study, the anonymity of survey participants was used to encourage candid responses (polit & yang 2016). ethical considerations ethical clearance was obtained from the university of the witwatersrand, human research ethics committee (hrec)(no. m211054). the following ethical principles outlined by the hpcsa were adhered to during the research process (hpcsa 2016): informed consent, autonomy, confidentiality and non-maleficence. an information letter was attached to the digital invitations and consent was obtained at the start of the survey. participants could exit the survey at any time without negative consequences. as the survey was distributed via emails and social media, participation was voluntary and accessible at a time convenient to the participants. no information that could identify participants was collected. no risk was anticipated for the participants as a result of their participation in this study. participants derived no direct benefits from participation in this study. results in this study, the results have been presented according to the four sections of the survey: section 1: demographic profile section 2: healthcare professionals’ understanding of the hct process section 3: hct practices of occupational therapists section 4: factors that promote or hinder the success of hct within occupational therapy services in south african public health facilities. a total of 74 respondents consented to participate in the survey. during the process of data cleaning, a total of nine responses were discarded. eight of these responses did not meet the inclusion criteria, while one response was discarded because of being a duplicate. the remaining 65 responses were utilised for the study, equating to a response rate of 5.3%. this response rate is within the range of 3.6% to 13% reported by previous researchers surveying a similar population (monareng, franzsen & van biljon 2018; pitout 2014; ver loren van themaat 2015). figure 1 details the number of responses obtained per section. sixty-five participants completed section 1, 52 participants completed section 2 and 41 participants completed sections 3 and 4. the loss of 24 participants between section 1 and section 4 of the survey may be because of survey fatigue or a lack of familiarity with the topic. notably, of the 24 participants who withdrew during the survey, 15 indicated that they worked with service-users across the lifespan, which may indicate that occupational therapists do not perceive a need to implement hct processes where there is no change in healthcare professional between childhood and adulthood. figure 1: number of participant responses per section. section 1: demographic profile the first section of the study provided a profile of participants involved in the study. as can be seen in table 1, the majority of participants had less than 10 years’ experience in public healthcare, with the highest frequency present in the category of 1–5 years’ experience. representation was received from all levels of public health services and eight out of nine provinces. table 1: demographic profile of occupational therapists who participated in the study (n = 65). the age range of service-users seen varied among participants. participants were able to select more than one category, as some participants saw multiple age categories at once, or rotated within the department, seeing different age categories at different times. a large proportion (35.4%) of participants worked with service-users across the full age range. the distribution of service-users by age suggests that service-users between the ages of 13 and 18 are more commonly seen by therapists who provide adult-orientated services (36.9%), as opposed to child-orientated services (15.4%) or purely adolescent services (4.6%). participants reported working with a wide variety of conditions in the adult and paediatric population in public health facilities. the most frequently seen conditions were neurological disorders (78.5%), orthopaedic conditions (56.9%), learning disabilities (55.4%) and congenital disorders (50.8%). other conditions that were commonly encountered were psychiatric disorders (38.5%), chronic medical illnesses (33.9%), sensory integration difficulties (33.9%) and visual impairment (32.3%). a small proportion of therapists reported working in specific fields, such as burns, functional capacity evaluations and medicolegal cases (7.7%). the majority of participants (50.8%) provided both childand adult-oriented services within the scope of their practice. where a clear demarcation existed between adult and paediatric services, 43.1% referred service-users to adult-oriented occupational therapy and 27.7% received adolescent referrals from paediatric-oriented therapists. this question allowed participants to select more than one option. where multiple options were selected, the participants reported working in a rotational role, where therapists spent a fraction of each year in different occupational therapy sections within the department, such as adult orthopaedic or neurological rehabilitation, paediatric rehabilitation or psychiatric rehabilitation. some of these sections worked with service-users across the full age range with a specific condition, such as orthopaedic conditions, while other sections, such as paediatrics, were clearly demarcated along age lines. section 2: healthcare professionals’ understanding of the healthcare transition process the second section investigated general perceptions held by occupational therapists around hct using a series of likert scale questions. figure 2 presents a visual representation of these perceptions. figure 2: occupational therapists’ awareness and knowledge of healthcare transition (n = 52). self-perceived awareness and knowledge of healthcare transition as can be seen in figure 2, 40.4% of participants believed they had a good understanding of hct (agree or strongly agree), while 36.5% expressed disagreement with the statement. in a follow-up question, participants reported deriving the majority of their understanding of hct from in-service experience (51.9%). other sources of knowledge on hct were undergraduate training (15.4%), continuing professional development (cpd) programmes (7.7%), publications (7.7%) and postgraduate training (3.9%). almost 10% of participants indicated that they were aware of recent research on hct, with 78.8% expressing disagreement with this statement. understanding of core healthcare transition concepts the majority of participants expressed disagreement with the statements that hct is the same as handover (50%) and that hct is a once-off event (67.3%); however, a large proportion of participants expressed a neutral response to these statements. the majority of participants agreed that hct is a long-term process (61.5%) and that it involves increased autonomy of the service-user (75%). responses around the degree of family involvement during hct varied, with 48.1% of participants believing that family involvement should decrease during hct and 26.9% believing that family involvement should increase during hct. participants expressed a strong agreement (94%) that service-users and caregivers should be involved in hct planning. in order of participant agreement, the factors that participants felt should influence when hct commences as shown in figure 3 are as follows: psychosocial factors (such as level of maturity, family situation, schooling etc. with 65.4% agreement), healthcare professionals’ determination of readiness through clinical reasoning (65.4%), service-users subjective perception of their readiness (50%), the family’s subjective perception of the service-user’s readiness (46.1%), and the age of the service-user (32.7%). figure 3: occupational therapists’ perception of factors that should influence the timing of transition (n = 52). section 3: healthcare transition practices of occupational therapists this section reports the main hct practices of occupational therapists in south african public health facilities, focussing on departmental hct policies and guidelines, preparation for transition, stakeholder collaboration and outcome measurement. table 2 indicates the practices used by occupational therapists within south african public health facilities when implementing hct. table 2: current healthcare transition practices of occupational therapists in south african public health facilities. policies used to guide the healthcare transition process twenty-nine per cent of participants indicated the absence of a departmental policy on hct. where hct policies existed, 41.5% of participants indicated that policy stipulated just the age of transfer, while 17.1% of participants had an hct policy that additionally described the process that should be followed when transitioning a service-user from paediatric to adult services. the majority of participants were either somewhat familiar (34.1%) or unfamiliar (29.3%) with their departmental policies on hct, with only 17.1% of participants expressing good familiarity with departmental hct policies (extremely familiar: 7.3% and very familiar: 9.8%). planning and preparation for transition this section investigated the processes used to identify service-users in need of transition to adult care and prepare service-users for the transition process. a significant proportion of participants (41.5%) indicated that there was no formal plan drawn up to prepare the service-user for the transition to adult-oriented services. for 26.8% of participants, a referral to adult services was the extent of transition planning. in a follow-up question, participants reported that changes in privacy were not always discussed with the service-user or caregiver in preparation for transition. where the discussion around privacy took place, more participants reported routinely discussing changes in privacy with the parent (36.6%) than the service-user (22%). five of the 41 participants who completed this section of the survey selected ‘other’ to all questions in this section, stating in the comments that these preparatory processes were not applicable to their departments because of a lack of any hct services within their practice context. determining transition readiness the majority of participants (58.5%) identified service-users in need of transition on an individual basis. the initiation of transition appears to be primarily based on age, as 65.9% of participants reported initiating transition at a stipulated age. a subjective evaluation of readiness by the referring therapist was used by 14.6% of respondents. while 7.3% of participants indicated that an objective transition readiness evaluation was used, no transition evaluations were named in the comments section provided. instead, other evaluations, such as literacy tests, were named. it is likely that participants are unaware of hct models and tools, possibly because of limited familiarity with current research on hct. collaboration between paediatricand adult-oriented therapists twenty-two per cent of participants indicated that no change in therapist occurred, as the same therapist provided both childand adult-oriented services. where a change in therapist occurred, 46.3% of participants communicated with the new therapist by sending the service-user’s records and/or patient file to the new therapist. fewer than 10% of participants made use of a comprehensive transfer package containing therapy records, reports or summaries, goals, action plans, transition readiness evaluations and legal documents. service-user and caregiver involvement in reviewing the healthcare transition process a significant percentage of participants (63.4%) report no involvement of service-users and caregivers throughout the hct process. a number of participants (12.2%) reported consistent involvement of service-users and caregivers in creating, planning, reviewing and disseminating hct resources. measuring outcomes of the healthcare transition process the majority of participants (65.9%) do not use any formal process to measure the success of the hct process. informal verbal feedback sessions are used by 24.4% of participants to evaluate the hct process. when rating the perceived effectiveness of their current hct processes in a follow-up question, the majority of participants (63.5%) rated the hct process as either ineffective (34.2%) or minimally effective (29.3%). departmental hct processes were rated as somewhat effective by 29.3% of participants and very effective by 7.3% of participants. an open-ended question allowed participants to state what could improve the effectiveness of current hct practices. a content analysis of the responses revealed a high frequency of participants (46.3%) citing the need for education and training on hct as a means of improving hct practice, as many had not been exposed to the concept previously, or felt they had a limited understanding of hct practice. a total of 24.4% of participants stated that policies and guidelines on hct needed to be put into place to guide the hct process. about 9.8% of participants stated that communication between different stakeholders in the hct process needed to be improved. other recommendations made by participants included the need for improving the resources required for hct, such as more permanent staff members, adolescent wards and programmes, and better record-keeping systems so that the outcomes of hct may be more accurately measured. section 4: factors that promote or hinder the success of healthcare transition within occupational therapy services in south african public health facilities in the survey, participants were provided with a list of factors that could be selected as a facilitator, and/or a barrier, or neither, to hct practices. for example ‘policies & guidelines’ may have been selected as a facilitator by participants with established hct guidelines in the workplace, whereas a participant with a lack of hct policies and guidelines could have selected this factor as a barrier. given that the list was not collectively exhaustive, an ‘other’ option was available for text responses. the duality of each factor as either a promoter or facilitator is presented in figure 4 in terms of frequencies. overall, more factors were perceived as hindrances than promoters. figure 4: factors perceived to promote or hinder healthcare transition implementation by occupational therapists in south african public health facilities (n = 41). as shown in figure 4, the three main factors perceived by participants as hindering the hct process in the workplace are insufficient development of policies and guidelines (61%, n = 25), inadequate education and training (53.7%, n = 22) and limited willingness and motivation to carry out hct programmes (51.2%, n = 21). the three greatest factors identified by participants (n = 41) as promoting hct processes are the presence of policies and guidelines (36.6%, n = 15), stakeholder collaboration (36.6%, n = 15) and human resource capacity (31.7%, n = 13) indicating that sufficient therapists were present to support the implementation of hct. effective management at a departmental and institutional level was also cited as an important factor in promoting hct by 31.7% (n = 13) of participants. discussion demographic profile of participants responses were received from participants across all levels of south african public healthcare facilities, working with service-users with a variety of conditions such as physical and/or intellectual disabilities, psychiatric disorders and chronic illnesses. this study provided a broad overview of occupational therapists’ hct practices within the south african public health system. the majority of participants had less than 10 years’ experience in public healthcare, with the highest frequency present in the category of 1–5 years’ experience. the higher prevalence of newer therapists in this study is consistent with findings by ned et al. (2020), who found that retention of occupational therapists in the public health system is poor, resulting in a high therapist turnover and a younger workforce. considering that most participants derived their knowledge of hct from colleagues through in-service experience, occupational therapy departments in public health facilities may have limited knowledge-sharing and execution of hct practices. perceptions and knowledge of healthcare transition participants’ limited knowledge of hct was identified within this study. while many participants initially perceived themselves to have a good understanding of hct, later responses revealed misconceptions about hct concepts and an awareness by participants that education and training on hct is needed. previous studies conducted in the united states of america have yielded similar findings: many healthcare professionals have reported feeling unprepared for engaging in the hct process because of a lack of training and expertise in hct processes (anderson et al. 2018; sadun et al. 2019). some core concepts of hct resonated with participants. most participants agreed that hct is not a once-off event. this is in line with the society for adolescent medicine’s definition of hct, which describes it as a long-term process occurring between childhood and adolescence (blum et al. 1993). participants also agreed that hct should commence when the service-user is ready, which demonstrates an awareness of the need for assessing transition readiness. considering the individualised personal and health needs of the adolescent before initiating transition is one of the key factors influencing the success of the hct process (ritchwood et al. 2020; tepper, zaner & ryscavage 2017). a significant misconception that emerged at various points throughout the responses is the perception that hct is not necessary if the service-user remains with the same therapist during their transition from childhood to adulthood. this emerged in the content analysis of the open-ended questions, as participants cited no change in the therapist as a potential reason why hct, in particular, transition readiness and planning, was not needed. healthcare transition is still considered necessary even with no change in therapist, as there is still a need to move the adolescent from the more family-orientated, supervised services of paediatric-oriented care, to the individual-focussed adult-oriented care that grants the service-user more autonomy as they begin to navigate adult roles and vocation (castillo & kitsos 2017; robertson 2006). current practices of occupational therapists in south african public health facilities within this study, the reported hct practices of occupational therapists within south african public health facilities vary. policy on hct, where it exists, is often limited and hct tools, such as transition readiness questionnaires or outcome measures, do not appear to be routinely used. limited policies and guidelines are likely to affect the standardisation of hct processes and measurement of hct outcomes within this context. discrepancy between the perception of healthcare transition and current practice although an understanding of some hct concepts was expressed by participants, this did not appear to translate into routine practice. while participants selected the age of the service-user as the least important factor in determining transition readiness, 66% of participants used age as the criterion for initiating transition within their practice settings. although 94% of participants agreed that service-users and caregivers should be involved in the hct process, 63.4% reported no input from caregivers and service-users in current hct practice. occupational therapy as a profession stresses the importance of client-centred practice in collaboration with the service-user and their family (kielhofner 2009). this value is an integral part of the contemporary paradigm of the profession and forms an important aspect of undergraduate occupational therapy training. family and client-centred practice is also recognised as an important core competency within the who rehabilitation competency framework (world health organization 2020). these underlying professional principles may have guided participants to identify the discrepancy between what hct should look like and current hct practice, with 63.5% of participants evaluating their department’s hct practices as ineffective or minimally effective. the discrepancy between the values of the occupational therapy profession and current hct practices may result from an ineffective translation of occupational therapy values into the public health system. a previous study conducted on south african occupational therapists identified a similar tendency for occupational therapists working in public healthcare to fall into a mechanistic or medical model of practice that sometimes fails to embody the fundamental philosophy of the profession (naidoo, van wyk & joubert 2016). current healthcare transition practice pathways it appears that current hct practices among occupational therapists in south african public health facilities take two possible pathways: (1) service-users remain with the same occupational therapist throughout the therapy process until discharge or (2) service-users are referred from paediatric to adult-oriented occupational therapists when deemed ready. pathway 1: service-users remain with the same occupational therapist throughout the therapy process: this study found that half the participating public sector occupational therapists (50.1%) work with service-users across the lifespan. this is as a result of either being the only therapist in the department or because of a rotational system in which therapists see service-users according to their availability. as mentioned previously, the lack of change in therapists was perceived by some participants as a reason why hct processes were considered unnecessary. this indicates a need for clarifying the process of hct in cases where there is no change in healthcare professionals, as this appears to be a significant therapy context within south african public health facilities. according to the got transition guidelines, the hct process without change in healthcare professionals would still require the healthcare professional to assess the service-user’s readiness for transition to an adult model of healthcare and prepare the service-user to assume greater autonomy for managing their healthcare (got transition n.d.). identifying transition readiness and creating a transition plan should be carried out in collaboration with the service-user, family or caregiver and in accordance with the adolescent’s level of development (castillo & kitsos 2017; hasegawa & gleeson 2018; hobart & phan 2019). some adolescents may be able to work towards setting their own appointments and making decisions about the goals of therapy, while others may require parent or caregiver involvement for a longer period or indefinitely. as a child moves into adolescence and early adulthood, it is expected that the focus of occupational therapy would move from a focus on childhood occupations, such as play, learning and activities of daily living, to adult occupations, such as work, leisure and instrumental activities of daily living (american occupational therapy association 2020). additionally, it would be expected that service-users begin to assume greater responsibility for their therapy (castillo & kitsos 2017). applying an hct model would ensure that the therapist prepares both the service-user and family adequately for these changes during adolescence, even where no change in the therapist occurs. an important part of the preparation process is discussing changes in privacy and confidentiality that accompany the transition from childto adult-oriented services (bailey, o’connell & pearce 2003; mbalinda et al. 2021). this process is necessary even when no change in therapist occurs. this study revealed that changes in privacy and confidentiality are not routinely discussed with service-users and caregivers. this indicates a potentially significant gap in the hct preparation process, which may have ethical implications. practical training is needed on the ethics involved in the shift from paediatric to adult-oriented services within south african occupational therapy. pathway 2: service-users are referred from paediatric to adult-oriented occupational therapists when deemed ready: where occupational therapy services were split into paediatric-oriented and adult-oriented services, the majority of participants initiated transition at a stipulated age, around the age of 12 to 13 years. the tendency to initiate hct based on age alone has been documented in hiv-related studies on hct in south africa (westwood et al. 2014; zanoni et al. 2021). adolescents appear to be transferred abruptly to adult care at the age of 12 without preparation for the transfer, which has been associated with poor clinical outcomes and reduced retention in care (zanoni et al. 2020). according to the society for adolescent medicine, the age of the adolescent should not be the primary criterion for initiating transition; instead, transition readiness should be determined by the adolescent’s ability to begin managing their own healthcare (santelli et al. 2003). while transition readiness assessments have been identified as a useful tool in deciding when to initiate hct, these measures are not routinely used in practice (zanoni et al. 2020). this is consistent with the findings of this study. within this study, it appears that adolescents from the age of 13 and above were more likely to receive adult-oriented occupational therapy services than paediatric or adolescent-specific services. an abrupt shift to adult-oriented care at the age of 13 may result in adolescents being placed within a model of care that they are unprepared for or that does not meet their developmental needs. adult-oriented health services tend to be characterised by a significant reduction in support by a healthcare professional and an increased demand for service-users to take responsibility for their own health (ritchwood et al. 2020). the support of healthcare providers during hct is a key factor in adolescents’ experience of the hct process in south africa (malapela, thupayagale-tshweneagae & ibitoye 2020). the lack of support and perceived inability to meet the demands of adult care has been associated with a reduction in adherence to healthcare services and a tendency to miss appointments (abaka & nutor 2021; mbalinda et al. 2021; overbury et al. 2021; wan et al. 2019). inadequate therapist support during hct poses a significant risk that adolescents may be lost to occupational therapy services at a critical stage in their development. a lack of access to occupational therapy services in adolescence may result in poor support for adolescents during the development of important life roles and occupations, such as educational activities and social participation. these occupations form the foundation for prevocational and vocational roles in adulthood; hence, the absence of support for successful engagement in these occupations may have a negative effect on the overall functional outcomes of adolescents with disabilities or chronic health needs (eismann et al. 2017; weiss et al. 2021). according to the occupational therapy practice framework 4th edition, occupational therapy services during adolescence should include preparation for transition, education on the change in roles and expectations during transition, and assistance to adapt to new roles or life situations (american occupational therapy association 2020). the continuity of occupational therapy services during the transition period is critical to improve the overall functional outcomes of adolescents with disabilities or chronic health needs (eismann et al. 2017; weiss et al. 2021). this necessitates the presence of an effective hct process that ensures adolescents continue utilising occupational therapy services until they no longer require these. factors that promote healthcare transition processes policies and guidelines the presence or absence of policies and guidelines on hct was the main factor identified as influencing the hct process. fifteen participants viewed the presence of an hct policy or guideline as a factor that promoted the effective implementation of hct, stating that it ensured service-users were transitioned rather than being lost. however, this study also found that most participants (41.5%) have hct policies or guidelines at their workplace that just stipulate the age at which a child is transferred to adult services. this finding is supported by another south african study that found hct protocols are based on the child’s age and do not appear to outline the process of hct or recommend available transition evaluations or tools (zanoni et al. 2020). although some therapists may perceive current age-based hct guidelines to be sufficient, therapists may not be aware of the detrimental impact of an abrupt shift to adult services without adequate preparation. it is thus recommended that current hct policies used by occupational therapists are updated to adequately guide therapists on best practices. stakeholder collaboration good stakeholder collaboration was a factor perceived to promote the effectiveness of the hct process by 15 participants. in cases where transition was accompanied by a change in therapist, the presence of communication channels, particularly between paediatricand adult-oriented occupational therapists, was a factor that assisted in ensuring a smoother transition. these communication channels have been identified as one of the most important predictors of successful hct (hobart & phan 2019). communication between paediatric and adult occupational therapy services is critical for a seamless transition process, as it is important that both healthcare professionals understand the adolescent’s context, history and needs (kerin et al. 2020; ritchwood et al. 2020). where a change in occupational therapist occurred during adolescence, the majority of participants indicated that communication between paediatric and adult occupational therapy services consists mainly of sending the service-user’s records and/or a report or summary to the new therapist. this suggests the potential for improving communication through additional measures, such as joint sessions and pre-transition meetings involving adolescents and clinicians from both health services (jones, ritchwood & taggart 2019). although participants highlighted stakeholder collaboration as a promoter of hct, not all stakeholders appear to be part of the collaborative process. despite 94% of participants indicating that service-users and caregivers should be involved in planning the hct process, input from youth and caregivers was rarely considered when developing hct policy. the vast majority of participants indicated that there was no involvement of service-users and caregivers in reviewing the hct process (policies, guidelines and evaluations) to evaluate outcomes. studies show that consultation with adolescents and parents is often not optimised during the hct process, which can cause confusion and impede the transition period (abaka & nutor 2021; jonas et al. 2019; kerin et al. 2020). poor involvement of adolescents in the hct process can result in service-users being inadequately prepared for transition, which can have a negative effect on the outcomes of the hct process and can result in poor adherence to therapy (price et al. 2019). it is important that collaborative efforts are extended to service-users and caregivers to enhance the hct process. human resource capacity the presence of sufficient human resource capacity was cited as a factor that promoted the hct process by 13 participants. this finding contrasts other south african studies that identified human resource capacity as a barrier to the overall implementation of health programmes across the public health sector because of a severe shortage of healthcare professionals (maphumulo & bhengu 2019; national department of health 2017; ned et al. 2017). rehabilitation services in particular often face staffing limitations because of the freezing of posts and a lack of resources (ned et al. 2020). as a promoting factor, sufficient staffing can be expected to support aspects such as stakeholder collaboration and communication in the hct process. management and leadership interestingly, the categories of management and leadership were the only two categories that more participants highlighted as promoters of hct than hindrances to the process. the presence of effective institutional and departmental management has the potential to ensure that hct processes are adequately planned for, implemented and monitored (hasegawa & gleeson 2018). the perception of management and leadership being a factor that promotes hct programmes is unexpected. previous literature indicates that the public health sector is generally characterised by poor leadership and management, which has resulted in corruption, lack of performance monitoring and poor health outcomes for people utilising public health facilities (maphumulo & bhengu 2019; national department of health 2017; ned et al. 2017). contrary perceptions by occupational therapists in public health facilities may indicate positive potential for effective hct implementation in the future. factors that hinder healthcare transition processes a lack of policies and guidelines the majority of participants viewed the absence or insufficiency of hct policies as a hindrance to its effective implementation. although no formal processes were used to measure the success of hct, most participants subjectively rated their hct process as ineffective or minimally effective. this perception is supported by malapela et al. (2020) and zanoni et al. (2021), who identified that hct in south africa is challenged by the lack of evidence-based protocols, which results in a lack of standardisation of care and can negatively affect hct outcomes. poor hct outcomes can lead to failure to follow up, non-adherence to intervention and, consequently, health complications for adolescents (kung et al. 2016; westwood et al. 2014; zanoni et al. 2021). to be successful, the hct process requires policies and guidelines that indicate the criteria for determining transition readiness, beyond just age, as well as the process that should be followed and the roles of different stakeholders within the hct process (kerr et al. 2018; narla et al. 2021). an efficient and context-specific method for measuring hct outcomes should be included in policy development. occupational therapy policies on hct should also consider the profession’s values and contribution to hct within the multidisciplinary team. this can include a client-centred and collaborative approach to designing the hct process, identifying transition readiness based on a holistic evaluation of the adolescent and their life roles, and considering the functional outcomes of successful hct. occupational therapy services during the transition should include skills training in developmentally appropriate occupations, such as health management, that take place in the natural context of occupation (cahill & beisbier 2020). the development of hct programmes and policies that will be effective and meet the needs of south african adolescents requires input and collaboration at multiple levels. hasegawa and gleeson (2018) recommend that hct should be part of hospital standard operating protocols, involving input from senior executives, administrative staff, and both paediatric and adult clinics. they recommend that data should be collected at an institutional level to establish the efficacy of the chosen hct model. this process is important to allow for the development of large-scale funding models that can ensure adequate financial resources and operationalisation of hct programmes (anderson et al. 2018; blum et al. 1993; hobart & phan 2019). insufficient education and training participants’ limited knowledge of hct concepts and processes was highlighted throughout the study as a significant hindrance to the implementation of hct. the need for training in hct was the most frequent theme mentioned by participants as a way of improving the effectiveness of their hct practice. training in hct is needed to develop therapist expertise and improve motivation to put effective hct programmes into place. this finding correlates with earlier research by zanoni et al. (2021), who identified limited healthcare professional awareness of and training in hct as a significant barrier to the production and implementation of hct protocols. the development of hct training programmes for occupational therapists within the south african public health context will require the input of clinicians, academic staff, service-users and caregivers. training should not only be integrated into undergraduate occupational therapy programmes but also needs to be part of in-service education and mentorship programmes. this is particularly important considering that most participants stated that they derived their knowledge of hct from in-service experience and were unaware of recent hct research. training on hct should include a focus on adolescent health and development (anderson et al. 2018; jones et al. 2019). training should also equip healthcare professionals with expertise in maintaining the confidentiality and safety of adolescents during the transition (alderman et al. 2019). limited willingness and motivation to carry out healthcare transition programmes a significant barrier to hct implementation is the limited motivation of occupational therapists to carry out hct programmes. this may be because of unfamiliarity with the process, a lack of clear departmental protocols on hct or a high workload that does not leave sufficient mental and physical capacity for carrying out hct programmes. the majority (72.31%) of participants had less than 10 years of public healthcare experience, which may limit the perceived ability and willingness to implement novel hct programmes and improve existing programmes. ned et al. (2017) report a high turnover of therapists in the south african public health sector, resulting in a younger, less experienced workforce. this can have implications for the implementation of new programmes and processes, as continuity of programmes may be more difficult with a fluctuating workforce. limitations participants’ limited familiarity with the topic was evident, as a common variable was participants’ lack of knowledge about hct and insufficient training in hct. this is likely to have affected the completion of the survey, as there was a 36.9% loss of participants between sections 1 and 4. limited familiarity with hct may have contributed to misunderstandings regarding hct concepts, which may have affected participants’ ability to select appropriate responses. for example, participants reported using standardised transition evaluation tools, but analysis of the comments revealed the use of other standardised tests and a possible lack of familiarity with standardised transition tools. a low response rate (5.3%) means that, while similarities in practice may exist, the findings of this study cannot be generalised to the entire population of south african occupational therapists working in the public health system. conclusion this study provides a baseline overview of current hct practices within south african occupational therapy practice. while there appears to be an awareness of the need for hct among participants, challenges exist in the understanding and practical implementation of hct within the context of south african public occupational therapy services. there is a need for improved education of clinicians on hct concepts and guidelines. training on hct should be integrated into undergraduate curriculum programmes as well as in-service continuing education programmes. future research in south africa and other african countries is needed to investigate the role of occupational therapy and other health professions in hct. qualitative methods can be utilised to provide more in-depth and nuanced perspectives on how occupational therapists understand hct. an important aspect that will need to be investigated further is the difference between paediatric and adult models of occupational therapy, and how to optimise the shift between these models of care. this may assist in the development of training programmes in the future. realistic and contextually relevant policies on hct need to be developed to optimise the transition of adolescents from paediatric to adult models of occupational therapy services. this is critical to ensure that south african occupational therapists are able to provide uninterrupted and developmentally appropriate therapy services that can meet the needs of adolescents with chronic health conditions. acknowledgements the authors would like to extend their gratitude to all participants who provided valuable knowledge and perspectives to this study. in particular, they acknowledge the panel of experienced occupational therapy clinicians who piloted the survey and provided input that greatly enhanced the study. the authors express their appreciation to the occupational therapy association of south africa, rural rehab south africa and the ot tree, for disseminating the research survey. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions i.h. contributed to the conceptualisation, methodology, analysis, investigation, resources, data curation, writing, editing and reviewing of the article. f.b. contributed to the conceptualisation, methodology, analysis, data curation, supervision and reviewing and editing of the article. j.v.d.l contributed to the supervision, reviewing and editing of the article. funding information the authors did not receive financial support from any funding agency in the public, commercial or non-profit sectors. data availability the 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zanoni, b.c., archary, m., sibaya, t., musinguzi, n. & haberer, j.e., 2020, ‘transition from pediatric to adult care for adolescents living with hiv in south africa: a natural experiment and survival analysis’, plos one 15(10), e0240918. https://doi.org/10.1371/journal.pone.0240918 zanoni, b.c., archary, m., sibaya, t., musinguzi, n., kelley, m.e., mcmanus, s. et al., 2021, ‘development and validation of the hiv adolescent readiness for transition scale (harts) in south africa’, journal of the international aids society 24(7), e25767. https://doi.org/10.1002/jia2.25767 gun violence, disability and recovery book title: gun violence, disability and recovery author: cate buchanan isbn: 978-1493101771 publisher: xlibris, bloomington, united states of america, zar$46.72* *book price at time of review review title: gun violence, disability and recovery reviewer: andrés villaveces1,2 affiliations: 1senior violence prevention specialist, world bank group, united states of america 2injury prevention research center, university of north carolina, united states of america email: avillav@unc.edu postal address: 626 regent pl ne, washington, dc 20017, united states of america how to cite this book review: villaveces, a., 2015, ‘gun violence, disability and recovery’, african journal of disability 4(1), art. 169, 2 pages. http://dx.doi.org/ajod.v4i1.169 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. book review open access the public health approach to the prevention of violence has been applied for almost the last 40 years. during this period, several studies have shown that in many countries where firearms are abundant and violence rates are high, the proportion of people dying because of firearms is high. several studies have shown that the risk of suicide in the home due to firearms is increased when access to these devices is easy. the same occurs for homicide and for accidental deaths in the home. whilst these studies show to a great extent the devastating effects of fatal gun injuries they do not sufficiently capture the human consequences of injuries occurring due to exposure to these devices. gun violence, disability and recovery is a timely publication that not only captures the devastating consequences of gun violence but also gives this problem a human touch by telling a wide variety of stories from different people in several countries, who share with the reader their lives after being injured by a firearm. in addition to providing narratives of survivors of gun violence or secondary survivors (families, friends of victims), the book highlights different perspectives that include professionals from the justice, health, and social sectors. each chapter at the end contains spotlight sections that highlight specific cases from different countries. whilst these views are important to capture perspectives and indeed the direct human consequences of violence, this book goes well beyond sharing these narratives, and addresses the multiple needs associated to the victims: that include proper legal frameworks, rehabilitation resources and services – both physical and psychological – international standards, community and peer support, perspectives on human rights and victims’ rights, best practices and also a focus on perpetrators. the first section, comprising chapters 1–5, focuses more on a variety of issues related to gun violence and its consequences. for example, chapter 2 of the book addresses a key factor which highlights victims’ rights and how these concepts have evolved from the social movements of the 1970s to the more complex compensation schemes that include tax levies, increased services and funding for victims and, in the case of armed conflict, the creation of the international criminal court (icc). using examples from different countries, a diversity of truth and reconciliation commissions and reparation schemes are highlighted that include restitution, compensation, rehabilitation, satisfaction, and guarantees of non-repetition. finally the chapter addresses other strategies related to armed conflict such as vetting, amnesties and peace agreements. chapter 3 highlights physical injuries and trauma caused by gun violence and addresses not only the physical consequences to the body but also aspects of ballistics and how guns affect multiple organ systems. the chapter relates many consequences to the existence of proper trauma care systems and how these are key to increasing survival of individuals as well as reducing permanent disabilities. in chapter 4, the authors address the process of rehabilitation and what it entails, and highlight the importance of every step from arrival to health services to acute care measures, the existence of comorbidities and impairments due to gun injuries and the transition to life in the community. the focus is not only on the physical but also the psychological trauma and its consequences, and is essential and well linked to the need of proper mental health services. in the final sections of the chapter the authors focus on rehabilitation in the community, caregiving and the large amount of obstacles and costs associated with gun injuries. in every chapter the authors combine in a careful way the personal experiences learned through spotlight cases, with data about the problem and recommended practices and the links of these services to the need for proper legal and normative frameworks. chapter 5, the last one of this section, focuses on social protection. this chapter is key because it links single acts of violence to the devastating consequences for individuals, families and, in the end, for societies as a whole. the chapter highlights several typologies of social protection programmes. it addresses perhaps the most important factor, which relates to the huge economic consequences for victims of gun violence and their families. by linking the costs of rehabilitation to life after being victimised by a gun injury, this chapter highlights the risks of increased poverty, inequality and occupational impairments for individuals who have been affected by gun injuries. importantly this chapter highlights efforts to address disabilities in the workplace but also the current existing gaps aimed at protecting victims in several countries. importantly this chapter summarises very clearly six different social protection approaches for victims of gun violence and highlights their services, what and who they cover. a final call in this chapter is directed at ways to improve social protection programmes in different countries. the second section of the book, from chapters 6–10, highlights all the previous issues addressed in section one, but contextualised in specific countries. from guatemala to somalia, to south africa, to canada, and finally india, these chapters address, in the following order, the magnitude of gun violence, the experiences of victims of violence and their rehabilitation procedures, and follow-up with contextualised explanations of contacts with the justice, health, and social protection systems of each nation. this section is especially important because it focuses on five countries that are very different and as such illustrates with real examples the challenges that are carefully laid out in the first section of the book. the final chapter of conclusions and recommendations provides the reader with 13 key points aimed at a wide variety of disciplines and stakeholders and suggests possible strategies for improving prevention, care, rehabilitations, and protection for victims of gun violence. the recommendations highlight the need for improvement in trauma care and emergency services, rehabilitation and psychological support, caregiving and peer support, social protection, harmonisation of services including physical, psychological and social services, judicial responses to victims and to perpetrators. the chapter finally addresses the need for increased research, funding for services and strengthening of legal and normative frameworks for protecting victims’ rights including the passage of laws linking access to firearms to victims’ rights. the authors of gun violence, disability and recovery note that all of these approaches are relevant and this publication does an excellent job in linking personal experiences with the overall individual, family, community, and social responses that are needed to reflect the rights of victims of gun violence. it further improves these linkages with a rich review of the problem in different contexts that is further enhances by a wide variety of spotlight sections that complement all chapters. the book is a necessary resource for all those working to prevent and control gun violence as well as for those interested in victims’ rights. acknowledgements references about the author(s) jonathan pearlman international society of wheelchair professionals, university of pittsburgh, united states human engineering research laboratories, veterans affairs pittsburgh healthcare system, united states department of rehabilitation sciences and technology, university of pittsburgh, united states rory cooper international society of wheelchair professionals, university of pittsburgh, united states human engineering research laboratories, veterans affairs pittsburgh healthcare system, united states school of health and rehab sciences, university of pittsburgh, united states department of rehabilitation science and technology, uniformed services university of health sciences, united states citation pearlman, j. & cooper, r., 2017, ‘editorial’, african journal of disability 6(0), a423. https://doi.org/10.4102/ajod.v6i0.423 editorials editorial jonathan pearlman, rory cooper copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. it is a pleasure to write this editorial for the special issue on wheelchairs in less-resourced settings in the african journal of disability (ajod). we wish to thank the editorial staff of ajod and specifically express our appreciation to dr leslie swartz for the support. the manuscripts published as part of this special issue represent the most recent and some of the most important research being published to guide the wheelchair sector. the special issue was co-hosted by the international society of wheelchair professionals (iswp) which was launched in 2015. iswp’s mission is to serve as a global resource for wheelchair service standards and provision through advocacy, training and testing, standards, evidence-based practice, innovation and a platform for information exchange. supporting this special issue is one of the ways iswp is working to encourage researchers, clinicians and policymakers to focus on the issues in the wheelchair sector and promote the evidence-based practice that can drive improvements in wheelchair service provision so that more people receive the high-quality affordable and appropriate wheelchairs that they need. there have been impressive improvements that have helped to professionalise the wheelchair sector in less-resourced settings in the last 10 years, and the pace of those changes is increasing. a catalyst for this transformation occurred at a consensus conference in 2006 in bangalore, india (sheldon & jacobs 2007), where stakeholders decided on a roadmap to strengthen the wheelchair sector, established the definition of an appropriate wheelchair and estimated the scale of the need (world health organization [who] 2011). this effort led to the publications from the who of guidelines on wheelchair provision in less-resourced settings (who 2008) and training resources (who 2016a, 2017a, 2017b). these documents, as well as other published training programmes (e.g. coolen et al. 2004; emergency wheelchair package 2017; toro et al. 2017), have become important resources for organisations working in the wheelchair sector and governments working to serve their citizens under their obligations under the united nations convention on the rights of people with disabilities (uncprd) (un 2006; who 2011). in spite of the progress, there is still a tremendous amount of work to be done to ensure wheelchair users have access to appropriate services and devices. the need is substantial – with over 75 million people in need of wheelchairs worldwide, and only 27% on average having access to them (who 2008). a diverse group of organisations that take different approaches to provide wheelchairs are working to meet this tremendous need. although the goal of providing reliable and safe mobility to individuals is similar, we know the outcome can vary significantly depending on the specific needs of the individuals and how well they are met by the products and services delivered. comprehensive guidelines and training packages, such as those published by the who (2008, 2016a, 2017a, 2017b), help to establish a starting point to standardise wheelchairs services across the sector; however, robust research initiatives must be used to measure the outcomes of wheelchair services so that the strategies can be continually improved to achieve best practices. the who, through the global cooperation on assistive technology (gate) (who 2016b) initiative, recently published a global research agenda for improved access to high-quality affordable assistive technology (who 2017c) that includes the following five research domains: effects, costs and economic impact of assistive technology assistive technology policies, systems, service provision models and best practices high-quality and affordable assistive technology human resources for the assistive technology sector standards and methodologies for the assessment of assistive technology need and unmet need. the manuscripts published in this special issue are within these research areas and provide examples of the most recent evidence guiding the wheelchair sector in less-resourced settings. the effects of wheelchair services through different service provision models (domains 1 & 2) are described in bazant et al. (2017), shore (2017) and ellapen et al. (2017). policies (domain 2) related to accessibility to building infrastructure and higher education in africa are covered in yarfi, ashigbi and nakua (2017) and chiwandire and vincent (2017), respectively. the topic of high-quality and affordable wheelchairs (domain 3) is covered in several articles, including the works by rispin, huff and wee (2017), rispin, hamm and wee (2017) and mhatre, martin and mccambridge (2017) who describe a tool to measure the condition of wheelchairs, mhatre, ott and pearlman (2017) who describe new standardised test methods to ensure wheelchairs are reliable, stanfill and jensen (2017) who describe field evaluation and onguti et al. (2017) who describe a model for design competitions. human resources for the assistive technology sector (domain 4) is the focus of several manuscripts, including the works by fung et al. (2017) who describe an opportunity for integrating wheelchair services training into academic programmes worldwide, norris (2017) who describes the benefits of peer training for wheelchair users and munera et al. (2017) who describe the development of wheelchair services training of trainers programme being published by the who. the manuscript by kamaraj et al. (2017) provides a conceptual framework for assessing the need and impact of wheelchair services provision based on a range of variables and fits within domain 5. these manuscripts address important research questions that could lead to improvements in wheelchair service provision, and motivate additional research questions to be addressed in the challenging environments of less-resourced settings (jefferds et al. 2011). a topic that stands out as one of the most important is in the study of effects, costs and economic impact of assistive technology (domain 1). fundamental questions, such as the economic costs versus benefits of providing a wheelchair, remain unanswered. among the researchers working in the wheelchair sector, this is not surprising because we view the need for wheelchairs through a human rights lens, as the human rights of people with disabilities are protected through national policies and codified in the convention on the rights of persons with disabilities (un 2006). however, governments, especially their ministries of health, must be convinced to provide wheelchairs and require economic justifications. not until a compelling economic case can be made to governments will mission-driven non-governmental organisations be able to scale to a global level to achieve our collective goal, and iswp’s vision, that all people who need wheeled mobility devices receive the appropriate products and services with dignity be achieved. acknowledgements competing interests the authors declare that they have no financial or personal relationship that may have inappropriately influenced the writing of this article. authors’ contributions j.p. was the lead author of the editorial and served as the editor for the special issue. r.c. provided feedback and revisions on the editorial and has provided substantive feedback on work reported in several of the manuscripts. references bazant, e.s., himelfarb hurwitz, e.j., onguti, b.n., williams, e.k., noon, j.n. et al., 2017, 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the author(s) mantji j. modula department of health studies, faculty of humanities, university of south africa, pretoria, south africa school of nursing, faculty of health sciences, university of the free state, bloemfontein, south africa citation modula, m.j., 2022, ‘the support needs of families raising children with intellectual disability’, african journal of disability 11(0), a952. https://doi.org/10.4102/ajod.v11i0.952 original research the support needs of families raising children with intellectual disability mantji j. modula received: 20 sept. 2021; accepted: 21 apr. 2022; published: 27 june 2022 copyright: © 2022. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the deinstitutionalisation of children suffering from intellectual disability (id) is a global phenomenon. most families raising such children experience a range of difficulties and require supportive systems to cope with physical, social and mental demands in a home environment. objectives: the aim of this study was to explore and describe the support needs provided to families raising children with id in the capricorn district of the limpopo province, south africa. method: in-depth individual interviews and focus group discussions were conducted with 26 families directly affected by the experience of caring for and raising children with id in capricorn district of the limpopo province. inductive thematic analysis was used to identify, categorise and organise the responses of the participants converted into intelligible statements with the assistance of atlas. ti version 8. results: participants identified support needs on information regarding care and management of the children with intellectual disabilities, professional collaboration on safety of the children, community involvement on the rearing of the children and improvement of their living conditions as most of the families and households were female-headed, of low income and needed further monetary support. overall, the totality of challenges, demands and inadequate support services coalesced in marginalisation of children with id and their families. conclusion: families raising children with id are diverse and complex with unique support needs. therefore, a multilayered approach should be taken to address the concerns and improve the families’ quality of life. a foreseen challenge would be to secure the involvement of the stakeholders representing a variety of sectors, organisations and services. keywords: challenges; child; development; family support; intellectual disability; needs. introduction intellectual disability (id) refers to a form of incapacitation that is distinguishable by significant intellectual and adaptive behavioural limitations that emerge before an individual reaches 18 years of age (american psychiatric association [apa] 2013; sadock, sadock & ruiz 2015). in this study, the researcher considers id as referring to mild, moderate, severe or profound cognitive development that stifles a child’s overall growth and development. the social model associates the disability with disabling barriers, societal attitudes and response towards people with impairments. it further focuses on environmental, social and material barriers, such as culture, policies, influences and practices, which cause restrictions, limitations and exclusion of persons with disabilities to participate in the activities of societies (oliver 1990). the world health organization (who) (2011) reported that persons with id appear more disadvantaged than those presenting with other disabilities. this is because of the long-term physical, neurological, cognitive, sensory and psychological challenges affecting their interaction and functioning in society (united nations 2006). the who (2012) mentioned further that most children with mild and moderate disabilities are unidentified until at school-entry in most developing countries because of different factors including unavailability of mobile units and clinics to provide diagnostic services. intellectual disability deficit factors are classified as mild, moderate, severe or profound impairment in accordance with adaptive functioning rather than intelligence quotient (iq) (sadock et al. 2015). the south african census of 2011 reported that 4.2% of people presented with memory and concentration impairment (3.2% mild and 1.0% severe difficulties) (statistics south africa 2014). according to who (2012), lower-income countries encounter higher rates of mild to moderate id, which is a manifestation of poverty and deprivation that undermine the development of vulnerable children. furthermore, in these countries, the prevalence rates of people with high numbers of id were found to be in rural areas across the world (who 2011). article 7 of the united nations convention on the rights of persons with disabilities (uncrpd) mandates all countries to uphold equal human rights and fundamental freedoms of children with disabilities (united nations 2006). the promotion of these children’s rights confirms the obligation to protect them from unjust treatment, guaranteed access to health, rehabilitation, education and protection from exploitation (unicef 2007). in this regard, the family is obliged to provide care and support to its young, sick and elderly members (dosd 2013). in the south african context, the multicultural nature of the society has contributed to the evolvement of types of families and households, ranging from nuclear, single-parent, extended, skip and three-generation households, polygamous, female and child-headed, same-sex, cohabitation and migrant families (dosd 2013). the white paper on families in south africa has identified that the primary roles of families towards their members were that of fostering membership and family formation, developing economic support, as well as nurturance and socialisation (dosd 2013). at the same time, the family’s ability to care for the needs of the children with id is dependent on the competence of the community to meet the family’s diverse support needs (mckenzie 2013). in this regard, the researcher found it significant to conduct this study to explore the support needed by these families living and raising children with id in south african context. statistics south africa (2014) reported that there were 2 870 130 south africans (7.5% of the population) living with disabilities in the 2011 census year. for purposes of this study, particular focus would be on those between 5 and 19 years of age as, it was assumed, the children were not recently diagnosed and their families had adequate experience of raising these children with id. accordingly, those aged 5–9 years constituted 10.8% (n = 447 843) of the population, followed by the 10–14 years’ age cohort (4.1%, n = 447 843) and the 15–19 years age group (2.6%, n = 108 738). south africa faces a lack of reliable statistical information of persons with disability and poor tracking systems for recording of service attendance (mkabile & swartz 2020), which adversely impacts the ability of the government to make decisive interventions to cater for their needs. the current statistical information on disability relied on the national census. although foetal alcohol spectrum disorder was found to be the most common cause of id in south africa, other factors such as malnutrition, infectious diseases and injuries also contributed to high id incidences (mckenzie et al. 2019). deficient statistical information compounds the situation when children continue to be hidden by their families and cannot access any services envisioned in the integrated national strategy on support services to children with disability (inssscd) (dosd 2009). as the primary caregiver in the life of the child with id, the family faces their own difficulties in providing normal expected life functions in most cases (adithyan, sivakami & john 2017; pan & ye 2015). it is evident that families of children with id experience increased stress levels that threaten the integrity of the family structure (ahmad & khanam 2016). as the principal and most permanent support setting to children with id, the family also deserves supportive services to strengthen normal family life of its members (irazabal, pastor & molina 2016). nevertheless, the rearing of any child by the family requires support and availability of resources (mckenzie & mcconkey 2016). south africa is one of the upper middle-income countries where the majority of black african families continue to live in poverty and lack of specialised services for id (mkabile et al. 2021). few studies have been conducted on support experiences of families of children with id in south africa and little is known about the survival of these families to cater for the needs of their children with id. the researcher found it important to assess and explore the support needed by these families to provide care and support to their children with id in the limpopo province. in south africa, family and parenting support policy indicates that some children are raised by a sequence of primary caregivers, including female relatives of their parents, grandparents or their own generation in families with low monthly income (unicef 2015). the family and parenting support policy stresses that the family is a societal unit, which requires ecological balance planted within supportive networks. hence, support is focused on stability and general functioning of the family (unicef 2015). the fundamental goals of family support intended to encourage positive feelings towards the family to commence and continue proactively in taking appropriate steps to raise fulfilled children (fujioka et al. 2015). it is evident that families of children with id deserve maximum support (irazabal et al. 2016), to the extent that further research studies should be undertaken to identify appropriate support services for families (mckenzie & mcconkey 2016). however, the support needs of the families raising the children with id are constantly changing as the children grow up and experience more obstacles in life (krajnc & seršen 2017). therefore, the researcher undertook this study during her phd studies to understand the experiences and the support needed to enable these families to cope in this continuous changing environment. the study was conducted to explore and describe the support needs provided to families raising children with id in the capricorn district of the limpopo province, south africa. the specific objectives of the study were: to explore and describe the challenges experienced by families raising children with id to assess the existing support programmes and services provided to families living with children with id to propose a range of recommendations for professionals regarding the support needs of the children with id and their families. research design and methods study design this study adopted a qualitative research approach to facilitate and enhance a stakeholder-centric mode of data collection, analysis and interpretation (gray, grove & sutherland 2017). this design was most suitable because it enabled a more detailed exploration and description of the id phenomenon from the participants’ perspectives in an unconstrained manner through focus group discussions and in-depth interviews (gray et al. 2017). setting the study was undertaken in the capricorn district municipality of the limpopo province, which comprises the blouberg, lepelle-nkumpi, molemole and polokwane municipalities. the capricorn district municipality is one of the limpopo province’s five major municipalities. the other four district municipalities are mopani, greater sekhukhune, vhembe and waterberg. the capricorn district municipality is approximately 80% rural, with a uniquely diverse ethnic and cultural mix that includes five distinct language groups (capricorn district municipality 2017). the district has a higher economic growth potential, compared with the other four provincial districts (capricorn district municipality 2017). the district also comprises 30 traditional authorities and is concentrated with a high population density because of the attraction of possible job opportunities, better healthcare and schooling facilities (capricorn district municipality 2017). mankweng and polokwane tertiary hospitals are located in this district. it is this range of socio-economic and developmental factors that convinced the researcher to undertake the study in this district municipality that is known for better service delivery compared with other municipalities in the limpopo province to explore and describe the support needs provided to families raising children with id. study population and sampling the study population consisted of primary caregiving family members who were available, accessible and willing to share their experiences of raising children living with id. the vulnerability of the families of children with id leads some families to hide their children from the community because of the social stigma around the diagnosis. this resulted in the researcher employing the purposive snowballing technique by approaching families whom their children with id were accessing health, social and education services in their communities. these families introduced other families they knew or met during community gatherings, school meetings and functions to the researcher (brink, van der walt & van rensburg, 2018). this approach enabled the researcher to identify even families who were unknown at nearby health facilities and schools. the eligibility criteria included any member of the families whose specific characteristics were that they had direct caregiving responsibilities, experience and exposure to children living with id (polit & beck 2017). in addition, the researcher’s own judgement was also instrumental in the selection and inclusion of family members whose children were above 6 years of age or of school-going age. at this age most children’s diagnoses of id are already confirmed as their developmental capabilities were able to be compared with their peers at schools. the included family members were mothers, fathers, grandparents, aunts, uncles, as well as guardians directly involved in raising the children with id. however, some families are not able to identify the cognitive dysfunction or delayed developments of the children with id till they are diagnosed at schools. based on this, it was the researcher’s opinion that these children have not been recently diagnosed and were emotionally ready to express their feelings (not in the study, but generally in their life circumstances). such families were assumed to have adequate information to share on the lived experience of raising and rearing the children with id. these factors helped the researcher to include these families to explore and describe their challenges experienced in raising the children with id. the researcher excluded the families of the children with intellectual disabilities under the age of 6 and above 19 years and those who did not meet the selection criteria. eventually, 26 volunteering individuals from different families were selected, which comprised 16 mothers, 3 aunts, 2 uncles, 1 father, 1 grandmother, 1 grandfather and 2 guardians of children living with id. data collection the researcher conducted 16 individual in-depth interviews and one focus group discussion of 10 members complemented with observational field notes to maximise the data collection process and its anticipated outcomes (saldana & omasta 2018). the researcher used field notes to document field-based observations that would not have been captured on the audio recorder during both the interviews and focus group discussions (marshall & rossman 2016). furthermore, the field notes helped the researcher to document pertinent information such as the participants’ emotional and psychological state and attitude towards questions posed to them. the researcher used interview guides designed in a semi-structured format to allow the element of comparability of information from different participants of both the individual in-depth interviews and focus group discussions (saldana & omasta 2018). the researcher included different groups of families for both individual in-depth interviews and focus group discussion to ensure richness of data (lambert & loiselle 2008). each individual interview lasted between 45 and 60 min, whilst the focus group discussion endured for about 4 h. the focus group discussion took a long time to enable the families to share their lived experience on the support needed to raise the children with id. as a result of the length of the focus group, the researcher allowed breaks in between, particularly for parents who brought their children along to attend to their children’s needs. the researcher was cautious of any indications of emotional responses such as fatigue and guarded against exhaustion by focus group members through active engagement during the breaks to encourage participation (lambert & loiselle 2008). both the individual in-depth interviews and focus group discussion were conducted in the home environments where participants raised their children with id (polit & beck 2017). the home environment provided the researcher with better understanding of the families of the children with id’s real context and the opportunity to reach out to those who were taking care of their children and could not leave their homes. data analysis the researcher concurrently analysed the data as they were being collected in a continuous, emergent, iterative non-linear process to allow for ongoing reflection, logical questioning and note-taking throughout the study. the researcher listened to the audio-recorded interviews and transcribed each into typed excel sheet text. the researcher read the transcripts in conjunction with written field notes to acquaint himself or herself with the data (rubin & rubin 2012). various codes were allocated to participants and themes to which each of the participants was associated. the transcripts were uploaded to the atlas. ti qualitative data analysis software for a systematic and time-efficient analysis where codes were assigned from an alphanumeric coding list with the assistance of a coding manager. similar codes were arranged according to emerging ‘families’ of individual and global themes and associated categories and subcategories. the researcher employed content analysis to arrive at the themes, categories and related subcategories from frequently occurring trends and patterns from the participants’ narrative statements. data were duly categorised and compared, including examination of any connections, regularities, variations and peculiarities (rossman & rallis 2012). information was summarised into meaningful units, presented into thick descriptions and quotes from the participants to demonstrate their authenticated voice in the context of supporting literature-based evidence (henning, van rensburg & smit 2013). ethical considerations the research ethics committee (rec) of the department of health studies, university of south africa, granted formal permission to the researcher to commence with the study’s empirical data collection process (reference number: hshdc/860/2018). both the limpopo department of health (reference number: lp_2018_07_014) and the capricorn district senior manager (reference number: s.5/3/1/2) consequently granted written permission for the study to commence at the study sites under their control. the participants signed an informed consent form as an indication of their formal agreement to participate in the focus group discussion and in-depth individual interviews. all participants gave verbal consent for audio-recording of their narrated statements. the researcher ensured anonymity of the collected data by removing any information that could link the participants to any aspect of the data (saldana & omasta 2018). results the analysed data revealed four thematic responses in terms of support needs pertaining to information, professional, community and improved living conditions for both families raising children with id and the children themselves. need for information support the affected families did not receive adequate formal information on id from health professionals after diagnosis of their children. to that effect, the study found that families lacked basic knowledge regarding the diagnosis and management of the behaviour and overall development of their children with id. the families have shown the importance of information to understand the care needed to improve the quality life of their family members. the following participant statements testify to this observation by the researcher: ‘the child’s development was up and down. i tried to train the child the way they showed me in the hospital. the child’s development was not well. everything slowed down. he was able to walk after a long time, maybe after 2 years if i still remember but it took time.’ (participant 1, 44 years old, mother) ‘the child destroys properties such as curtains and it is difficult to leave her alone. we always make sure that she does not play next to the windows. i do not understand what she sees in them.’ (participant 11, 27 years old, sister) ‘i delivered in gauteng province. i joined a support group. centurion officers were coming every day in the afternoon to give us information on the condition of my child … i miss that group since i came to limpopo.’ (participant 8, 53 years old, mother) the above excerpts imply that families lack information on id, including the developmental milestone and understanding the behaviour displayed by children with id. at the same time, those who had the opportunity to get information in other provinces continue to struggle to access information in the limpopo province to be able to meet the demands of raising the children with id. need for professional support most participants raised different challenges regarding the support provided by the health professionals and social services. the study revealed poor professional support resulting in poor collaboration between families and professionals providing services to children with id. the following excerpts bear testimony: ‘when i went to the school to visit my son, i found that he has lost two teeth and the lips were swollen and blue in colour. i was not informed before.’ (participant 4, 51 years old, mother) ‘they [professionals] do not visit us. we do not know them. i just see others visiting those with other conditions including human immunodeficiency virus and tuberculosis.’ (participant 5, 63 years old, mother) ‘my child was attending one of the disability schools, but i took the child from school because most of the time they will tell me to come and take the child very often. my child was sent back home by the previous schools without a reason. i am tired of taking my child up and down. i decided that he stays home.’ (participant 6, 42 years old, mother) families blamed professionals (e.g. teachers, nurses, psychologists, speech therapists, social workers and other health professionals) for not informing them about the progress of their children. they further reported poor or irregular home visits by social and healthcare providers. some reported that they were able to receive support from spiritual leaders. however, the support was dependent on active and regular membership of the family, as evident in the following quote: ‘my pastor was a good counsellor. he was able to visit us when i was still attending church regularly. currently i am not able to attend church anymore because people became tired of the child’s behaviour, especially because he [the child] will just grab things from others. others cannot tolerate him [the child].’ (participant 11, 27 years old, sister) need for community support the families indicated that communities lacked understanding of the children with id. as such, the families displayed the need for structured community support, including that of neighbours, local communities and spiritual organisations. the following statements attest this fact: ‘i have attended support group in the hospital when my child was still admitted. i enjoyed the group and it helped me to know that i was not the only one experiencing difficulties. the social workers were meeting with us every afternoon. i have never attended any since my child was discharged as we don’t have them in our community.’ (participant 7, 40 years old, mother) ‘she enters every house door and neighbours think that she is a witch because they do not understand her behaviour. people looked surprised by her behaviour.’ (participant 8, 53 years old, mother) ‘nothing, no support group. care centre suggested a support group but parents of children with intellectual disability never attended the meetings. parents do not seem to be interested. they report that they are always busy.’ (participant 9, 42 years old, aunt) the families felt isolated by the community, extended families and friends. some even decided to withdraw from friends and extended families intending to confront their situations by themselves. whilst some of the families were aided by support groups, some were not. need for support to improve living conditions the study revealed lack of resources to support the families’ basic needs and living conditions, which included poor nutrition and housing, lack of sanitation facilities, as well as financial struggles exacerbated by unemployment, especially amongst those mothers who were not working: ‘we cannot find jobs far away because we need to be there for the children. the child’s grant is not enough for his needs. i am not working, the grant for the children i pay r200 for transport of the child, school fees r150 per month and pocket money for children, burial society for the whole family and groceries.’ (participant 10, 45 years old mother) ‘i must go to their room outside the house to check on him and as a woman i am scared and do not feel safe during the night. he refuses to sleep on the floor in my room. i think the rdp [rural development programme] house will help me to take care of the child during the night. i made application for rdp long time ago and i am still waiting. they follow a list of applicants to build houses and latrines.’ (participant 11, 27 years old, sister) ‘the school transport fetches him at 08:30 and brings him home at 16:00. it is difficult for me to find work. the reason is that i must look after my child. in most cases, no employer can agree on the employee to work less hours. if i am not home, he [the child] goes out of the yard.’ (participant 12, 43 years old mother) the accumulated poor living conditions resulted in children not receiving proper education because parents were unable to pay for school transport and the cost of day-care centres. the families further elaborated that the social and disability grants from the government were inadequate and unsustainable. the affected mothers proposed for the government to provide them with caregiver grant because they lost any hope of finding employment to support their families financially. discussion the findings have shown that the families lack informational support needed to raise the children with id. this highlights a significant need for various aspects relating to the care and upbringing of children with id. in this regard, the information need is based on understanding of the child with id and management of the behaviour of the child, including information on the legal rights of these children to ensure their safety. in addition, information is essential to equip the families with the knowledge to train, care and support their children with id and further enable these children to learn self-care and basic cognitive skills. however, access to information for self-protection is regarded as a constitutional right for all citizens in south africa. furthermore, the white paper on the rights of persons with disabilities shows that provision of education on id instills responsibilities to communities and families in caring for and supporting these children (dosd 2016). basically, the social model shows that lack of information by the families to understand id limit the children’s level of functioning. this finding highlights the support need of the families to receive the adequate information on id to enhance their understanding on management of these children. in support, the study of davys, mitchell and haigh (2014) found that insufficient knowledge was a barrier to the families to plan for the special care of their children with id. in addition, the study of masulani-mwale et al. (2016) also found that parents of children with id in malawi needed to be provided with information on the causes and management of id. this finding is supported by the study of krajnc and seršen (2017), which revealed that parents of children with id in slovenia access less information from the services. however, the study of douglas, redley & ottmann (2017) resonated that id necessitated a quest for knowledge for the parents of the children with id as the key for reducing stress and adjusting to the condition of the child. hence, the lack of families in understanding id in this study compromised the care of the children in their home environment. in addition, acquisition and assimilation of different types of information is instrumental in directing the nature and type of care for children with id (douglas et al. 2017). however, duma, tshabalala and mji (2021) found that the south african families regard the professionals to be the best source of information on planning and managing the care of children with id. at the same time, supporting the families to understand id equips them with information to meet the care demands of children with id. it is in this regard that this study recommends professional educational and training programmes for the affected families in the sphere of knowledge, attitudes, behaviours and skills to encourage and motivate them to participate actively in the care of their children with id (caldwell et al. 2018). furthermore, professionals should provide more in-depth information to the families of children with id who mostly have less opportunities to self-directed learning (schmidt, schmidt & brown 2017). collaboration between professional care providers and the families of children with id would enhance professional support through mutual respect and communication, whilst also enabling these families to acquire appropriate skills and knowledge concerning the care of their children with id (dalmau et al. 2017). however, the findings revealed poor collaboration with families, which created a barrier to communication and resulted in a lack of access to support services. it is this reason that in this study some families preferred to take care of their children on their own to ensure their safety as some children were injured under the care of teachers. in addition, the finding highlights that a safe environment for the children with id is a struggle irrespective of whether they are at home, day-care centres, schools or community spaces. similarly, karisa, mckenzie and de villiers (2021) found that in kenya parents took their children with id to school irrespective of poor safety and care to avoid the $1000 fine or a year’s imprisonment for transgression of compulsory basic education rules for all children. despite the social model of disability by south african legislation to protect the rights of persons living with id, children with id continue to be neglected by societies and the institutions under their care. although the government developed policies for regulation of educational institutions, including schools and day-care centres, to cater for children with id, the educators’ role to meet the learning needs is still not aligned with the constitution of the country on educational rights of these children (mckenzie et al. 2019). in addition, the study of duma et al. (2021) found the need to upskill the teachers on id to enhance the care of the children with id and support of their families. the study recommends training programmes for educators, social and healthcare providers to update them on the needs of children with id and their families. the findings revealed the need for community support from extended families, friends, neighbours and spiritual organisations to cope with the challenges of raising children with id. the families felt isolated and not engaged in the community activities compared with those with children without disabilities. similar to the results of zechella and raval (2016), families experienced difficulties in the community or from neighbours who could not understand or accept the condition of the children with id. the findings were also similar to that of masulani-mwale et al. (2016), in addis ababa, where the families of children with id needed support from communities who were excluding them from social activities. in addition, owen et al. (2017) found that in the united states of america, the availability and access of community-based support services plays an essential role in assisting the families to cope during crisis moments. some families of children with id were not willing to attend organised meetings arranged by schools and day-care centres to form support groups. hence, in this study, home visits by professionals to the families raising these children were essential to encourage and support those who isolate themselves. this finding that is comparable to the study by wakimizu, yamaguchi and fujioka (2018) revealed that home visit services were required to support japanese families raising children with id. furthermore, the available community healthcare workers did not involve or engage with the families of children with id in community programmes. as such, the families felt neglected by these primary and community-based healthcare service providers. some families appreciated belonging to support groups of other families experiencing similar problems to share their experiences and difficulties associated with raising children with id. this was indicated by the families given the opportunities to attend support groups when their children were hospitalised. these findings were similar to those of schmidt et al. (2017), who found that parents enjoyed emotional support from other parents of children with id. this highlights the need for formation of support groups of the families of children with id within their communities. for example, aldersey, turnbull and turnbull (2016) found that in democratic republic of congo parents of children with id formed a national association support group registered as non-governmental organisation to meet their support needs. in this regard, the study suggests facilitation and coordination of support groups by professionals to support the families of children with id. this study recommends inclusion of families of children with id in the community health programmes as a mechanism to strengthen their community-based support systems. furthermore, strengthening of relationships with friends, neighbours and relatives is recommended through awareness of the id condition. however, the stigma associated with the disability of the child may cause the family to refrain from reporting the condition, which further leads to denial and perpetuates the extant lack of support (unicef 2007). professionals are encouraged to motivate family, neighbours, peers and relatives to enlist in mentorship programmes aimed at improving child-care competencies. at the same time, facilitation of trained community-based networks enhances family support and family life (zechella & raval 2016). the present study was conducted in rural areas with mostly single mothers who headed their households. most of these mothers were unemployed and found it difficult to meet the financial needs of their families. this resulted in families experiencing poor living conditions linked to sanitation, nutrition, housing and financial constraints. most of the families suggested monetary support to augment the disability grant that was regarded as not adequate to cater for children’s needs. the south african government has introduced the rdp to provide free houses and sanitation (french drains, ventilated and ordinary pit latrines) to low socio-economic status families. however, some families indicated that the process is slow and does not benefit them. in addition, the government provides independency care grant for the children living with id. nevertheless, the families indicated that the grant was inadequate and could not even cater for their elementary needs. previous studies have shown that many families in african countries were experiencing low socio-economic status and living in extreme poverty (keskinova, cicevska-jovanova & ajdinski 2013; zuurmond et al. 2016). in this regard, the south african government endeavours to continuously provide a supportive environment. for example, the department of basic education in the limpopo province provides for the free transportation of children with id to their special schools and free meals for children in need at schools. however, the service does not benefit all the children as the study findings have shown that some families continue to pay school transport for children with id. this finding is similar to the study of vergunst et al. (2015) conducted in the eastern cape province of south africa, where some children were not able to access free transport services and their families paid high costs from their pockets. in this study some parents were not able to pay expensive transport to take their children to school. consequently, these children were unable to attend school regularly and missed the opportunity to access free meals provided at the school through feeding schemes. accordingly, the study recommends prioritisation of basic services to families raising children with id to improve their living conditions. similarly, the national strategy on support services to children with disability of the department of social development has shown that children with intellectual and other forms of disability in the limpopo province were particularly marginalised and received limited and inequitable support services (dosd 2009). this further creates a difficult environment for the children to access healthcare, education, rehabilitation and early childhood development services to meet their needs. this study recommends involvement of government departments including that of roads and transport, social, human settlement and treasury to identify and assist families of children with id in need of support to enable their functioning. limitations and strengths this study was conducted in the limpopo province only, with families of children with id. this could limit the generalisability of the study to other provinces, as well as the views of those families whose children with id were adequately supported. the study also excluded the families of children who were disabled in other ways than intellectual. however, this study was supported by literature and previous studies and the findings could be transferred to other locations displaying similar characteristics (brink et al. 2018; polit & beck 2017). furthermore, statistical details and information on the prevalence of children experiencing id in the limpopo province and capricorn district were not available for comparative reference and background information. single mothers headed most families and most fathers had migrated to cities and other provinces in pursuit of employment opportunities. collectively, these two factors limited the male voice in the study. however, the experiences and challenges that were shared and repeated by several families contributed to the reliability of the study. implications for research the outcomes of the study contribute to knowledge in the realm of support recommended for families of children living with id. for policymaking, this study provides further evidence-based recommendations for government departments to address the support needed by families of children living with id. furthermore, it is critical to improve planning and implementation of professional support programmes and systems that significantly enhance the quality of life of the families living with children with id. more generally, supporting families to address the challenges experienced during the care of children with id is important at various practical levels. thus, professionals providing services to children with id should engage with families of these children on a continuous basis. such engagement should include feedback on the progress of the children with id. although the focus of this study is on family support needs, it is important to understand deinstitutionalisation implications on the families of children with id. conclusion this study focused on the support needs of families raising children with id and made multilayered recommendations to address the current support needs. the study further supports the need for government departments, non-governmental organisations, rehabilitation centres, special schools, day-care centres, local municipalities, community leaders, faith organisations, communities and all relevant stakeholders to participate actively and collaboratively in supporting families raising children with id for better quality of life. acknowledgements the author would like to greatly acknowledge the university of south africa for funding this study and on makhubela-nkondo for promotion. competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. author’s contributions m.j.m. declares that she is the sole author of this research article. funding information this work was supported by the university of south africa for doctoral studies for the author whilst conducting this research. data availability the data confirming the findings of this study are available within the article and/or its supplementary materials. disclaimer the views and opinions expressed in this article are those of the author and not an official position of the funding institution. references adithyan, g.s., sivakami, m. & john, j., 2017, ‘positive and negative impacts on caregivers of 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studies 25, 1295–1309. https://doi.org/10.1007/s10826-015-0285-5 zuurmond, m., nyapera, v., mwenda, v., kisia, j., rono, h. & palmer, j., 2016, ‘childhood disability in turkana, kenya: understanding how carers cope in a complex humanitarian setting’, african journal of disability 5(1), 2226–7220. https://doi.org/10.4102/ajod.v5i1.277 read online: scan this qr code with your smart phone or mobile device to read online. page 1 of 1 reviewer acknowledgement http://www.ajod.org open access acknowledgement to reviewers in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on https:// ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website and register as a reviewer. to access your details on the website, you 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as such, the identification and selection of reviewers who have expertise and interest in the topics appropriate to each manuscript are essential elements in ensuring a timely, productive peer review process. we would like to take this opportunity to thank all reviewers who participated in shaping this volume of the african journal of disability. we appreciate the time taken to perform your review(s) successfully. albert m. warnick alta kritzinger ameer s.j. hohlfeld anthony k. edusei anthony k. danso arne h. eide awie greeff bassey e. ebenso biftu geda boitumelo mangope brent e. archer brian watermeyer brinton lykes callista k. kahonde charlotte capri chioma ohajunwa chris-mike agbelie christine peta cina p. mosito claire e. brolan clare harvey clever taderera cliona o’sullivan dana donohue david howe desire chiwandire diane bell eleanor ross elizabeth hughes elizabeth townsend elizabeth walton elizabeth m. dalton emily mendenhall estelle swart eva orantes-gonzalez eva s. bazant 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rule petra engelbrecht phoebe runciman poul a. rohleder quinette louw rebecca a. matter reinette popplestone riaan mulder richard vergunst robert evans rose richards rosemary exner rosemary luger sameerchand pudaruth sarah m. anjos saurav basu seyi l. amosun sharon kleintjes shona mcdonald sindile a. ngubane-mokiwa steve reid stine h. braathen sulina green susan shore susan r. whyte tamlyn c. mckenzie tawanda chivese tehmina hammad terry j. ellapen theresa lorenzo toughieda elloker toyin m. adewumi vic mckinney victor de andrade wayne derman wilfred lunga wisdom k. mprah xolile simon yumna albertus yvonne lynch zuzana matousova-done https://ajod.org https://ajod.org https://ajod.org https://ajod.org/index.php/ajod/user https://ajod.org/index.php/ajod/user mailto:publishing@aosis.co.za abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) lebogang l. molefe department of nursing, faculty of health sciences, sefako makgatho university, pretoria, south africa leepile a. sehularo department of nursing, faculty of health sciences, north-west university, mafikeng, south africa magdalena p. koen department of nursing, faculty of health sciences, north-west university, mafikeng, south africa citation molefe, l.l., sehularo, l.a. & koen, m.p., 2024, ‘a programme of support for care assistants of children admitted with cerebral palsy’, african journal of disability 13(0), a1461. https://doi.org/10.4102/ajod.v13i0.1461 original research a programme of support for care assistants of children admitted with cerebral palsy lebogang l. molefe, leepile a. sehularo, magdalena p. koen received: 09 may 2024; accepted: 25 oct. 2024; published: 13 dec. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: cerebral palsy affects children’s movement and posture because of damage to the brain’s development. care assistants in healthcare facilities provide care to children. caring for the children is overwhelming, hence support is required. such support is absent, causing frustration among care assistants, which leads to poor quality care for children. objectives: to explore and describe the experiences of care assistants of children admitted with cerebral palsy in healthcare facilities of the gauteng province, and to develop a support programme for care assistants. method: a qualitative, exploratory, descriptive, and contextual research design was used. participants were selected from healthcare facilities in gauteng province. semi-structured interviews were used to collect data. content data analysis was used to analyse data. the results were used to develop a support programme for care assistants. results: three themes emerged, namely, a lack of training opportunities, a lack of resources, and a lack of support. the results were used to develop a support programme, using the three steps of the donabedian model for care: structure, process and outcome. conclusion: care assistants are not given training opportunities, work with limited resources and are not supported, hence the development of a support programme. if effectively utilised, the programme can lead to staff satisfaction and improvement of quality care for children. contribution: the study enabled managers in healthcare facilities to see the need for policy and the need for support strategies for care assistants. a support programme was further developed. keywords: care assistant; cerebral palsy; children; programme; support. introduction cerebral palsy refers to a group of permanent disorders of the development of movement and posture, causing activity limitations that are attributed to non-progressive disturbances or damage that occurred in the developing foetal or infant brain (sadowska et al. 2020). persistence of primitive reflexes or primary patterns that prevent or delay the typical progression of motor development beyond the expected age is a key clinical characteristic of cerebral palsy, manifesting itself with the neurological impairment of the motor system of a child, with characteristics such as spasticity, dyskinesia, hypotonia, ataxia and sometimes dysphagia (patel et al. 2020). however, not all children with cerebral palsy share the same profile because others may be mobile, play sports, attend university and even marry. however, others may never roll, feed or speak, and remain dependent on others for all activities of daily living. therefore, they are classified as having predominantly disorders of movement that further include a spectrum of abnormalities such as poor balance and sensory deficits. this study thus focusses on the latter. thus, children cannot perform activities of daily living that children their age can do. they cannot feed or bathe themselves, walk, talk, button clothes or pick up utensils; hence, they rely on other people for the fulfilment of activities of daily living. the global prevalence of cerebral palsy estimates ranges from 1 to 4 per 1000 live births. approximately 18 million people of all ages have cerebral palsy globally, and the prevalence in african countries is suggested to be higher than in western countries (malek, rosenbaum & gorter 2020). in south africa, the prevalence of cerebral palsy has been estimated to be as high as 10 per 1000 children (katangwe et al. 2020), with gauteng province having the highest number compared to other provinces (statistics south africa 2022). the population in gauteng province is 15.10 million. the province has the highest number of children with intellectual disabilities, including cerebral palsy (stats sa 2022). according to stats sa (2022), percentages of children with intellectual disabilities by province are gauteng 8.3%, kwazulu-natal 6.2%, eastern cape 4.2%, western cape 3.7%, limpopo 3.4%, mpumalanga 2.6%, north west 2.3%, free state 1.7% and northern cape 0.7%. the children are admitted to the hospitals for the provision of care because caring at home is difficult for parents and guardians (guimarães et al. 2023; sankombo 2023; smith & blamires 2022). when admitted to hospitals, children are cared for by care assistants, who perform basic tasks such as bathing, feeding, changing nappies, changing positions, playing with children and providing stimulation. the care business associate training (cbat) addressed the global context of care assistants’ qualification requirements. according to the organisation, there is no legal requirement for care staff to have any particular general certificate of secondary education (gcse), a-levels or degrees to work within the role in the care sector. however, they must have completed appropriate training to equip them with a standard level of knowledge, skill and experience before they begin working within the sector (cbat 2023). similarly, in south africa, the training and registration of categories of nurses are controlled by the south african nursing council (sanc), and this does not include the training of care assistants. there are no formal qualifications required to become a care assistant; however, one needs to have a caring nature and good communication skills. managers need to send care assistants for training in caring and communication to promote competency in the provision of quality care. because of the lack of a controlling body, most companies do not adhere to such requirements. several studies have found that caring for children with cerebral palsy is challenging and demanding. care assistants experience financial challenges, physical health problems, negative attitudes by other health professionals, stress, emotional trauma and a lack of recognition by employers (dlamini, chang & nguyen 2023; eloreidi et al. 2021; manyuma et al. 2023). there is no evidence of support for care assistants. the theory underpinning the study is social exchange theory which suggests that relationships are based on cost-benefit analysis, meaning each person seeks to maximise their benefits and is expected to reciprocate for the benefits they should have received. when risks outweigh potential rewards, relationships may be abandoned (ahmad et al. 2022). therefore, if care assistants do not receive support from their employers while providing care to children, they might feel demotivated and stressed and might abandon the commitment to provide quality care to children. objectives of the study to explore and describe the experiences of care assistants of children admitted with cerebral palsy in the gauteng province. to develop a programme to support care assistants of children admitted with cerebral palsy. research methods and design design an exploratory descriptive design was used to explore and describe the experiences of care assistants of children admitted with cerebral palsy in the gauteng province. the experiences of care assistants have limited coverage in the medical literature. before the study, little was known about the experiences of care assistants of children with cerebral palsy (hunter, mccallum & howes 2019). in sharing the experiences, coupled with the lack of support for care assistants, the researcher deduced the type of support that care assistants require, and this was further confirmed with care assistants, hence the development of a programme of support. a support programme will offer psychosocial support that will reduce high levels of stress, reduce social isolation, and connect caregivers to patients (joo et al. 2022). a study by soto-rubio et al. (2022) further affirms that support programmes are effective in reducing anxiety, emotional distress and burdens of those who provide care. support programmes increase knowledge and understanding, enhance efficiency and strategies to apply when faced with challenges (van der westhuizen et al. 2020). setting the study was conducted in the gauteng province, one of the nine provinces of south africa. the province is the smallest in size, but the highest in population and children with cerebral palsy (stats sa 2022). the majority of people in the province opt for government hospitals because of unemployment, competition for scarce resources and inability to afford to send their children to private hospitals. this causes overcrowding in government hospitals, which is further aggravated by limited human resources, including care assistants. it is for this reason that the researcher opted to conduct the study in the province’s three metropolitan municipalities, namely johannesburg, tshwane and ekurhuleni. six healthcare facilities that focus on children with cerebral palsy within the three municipalities were selected. table 1 provides a summary of the setting of the study, which is the three metropolitan municipalities, and six healthcare facilities within those municipalities. table 1: setting. study population and sampling strategy a non-probability purposive sampling technique was used. this technique is used when participants are selected because they have characteristics that the researcher needs in their sample. this means that not all members of a population have an equal chance of participating in the study (ames, glenton & lewis 2019). a target population was care assistants who provided care to children with cerebral palsy. for easy access, the researchers applied a setting to include only care assistants who provide care to children with cerebral palsy in the three metropolitan municipalities of gauteng province because this is where the gap of a lack of support for care assistants was identified. the principal researcher approached the chief executive officers of facilities and requested permission to use facilities as research areas. the researcher managed to access the wards where care assistants were allocated and requested voluntary participation in the study after a thorough explanation of the purpose, risks and benefits of the study. fifty care assistants who meet the inclusion criteria were approached and requested to participate. care assistants were the providers of care to children with cerebral palsy in the six facilities, and had experience of 2 years and above in caring. because of voluntary participation, only 20 agreed to participate, and for those who refused, their right to voluntary participation was respected. a summary of participants by municipality and healthcare facility is provided in table 2. table 2: participants by municipality and healthcare facility. data collection the study is qualitative; therefore, semi-structured individual interviews were conducted to collect data from the 20 participants. interviews were conducted by the principal researcher, in ward managers’ offices, which were quiet and away from the cubicles of the wards, between september and november 2021, after the ethical clearance certificate was obtained on 17 may 2021. before the interview, the researcher built rapport by greeting participants with a smile, introducing herself, reassuring the participants that the information shared would be kept confidential, and arranging the chairs so that the researcher and the participant could face each other. participants were asked if they were still willing to proceed with an interview and were reassured that the interview would not take long, and should the participant experience any discomfort during the session, they should inform the researcher so that the interview could be ended immediately. each participant was interviewed individually. the audio recorder was used to record the interviews, and consent to record such was obtained from the participants. participants were reassured that information shared will never be shared with anyone without their consent. the audio recorder and all transcripts were locked in a safe immediately after data collection by the researcher to prevent unauthorised access and were used again by the researcher during data analysis, which occurred immediately after all participants were interviewed. each interview lasted between 20 min and 45 min, and no interview exceeded 45 min. the following questions were asked unambiguously and in a neutral tone: ‘how did you experience caring for children with cerebral palsy in the ward? how can you be supported during caring for children with cerebral palsy?’ participants were encouraged to report their experiences and suggest the support strategies that will work for them. the researcher listened with minimal interruptions and ensured that the answers were to the point. the researcher further noted non-verbal cues and took field notes. all 20 participants were interviewed; however, most participants provided similar responses, indicating data saturation. data analysis content analysis was used to analyse data. six steps of data analysis were followed (creswell & creswell 2018). firstly, the researcher listened to the tape and transcribed the data. a separate file was created for each participant. every interview was documented separately. behaviours expressed in participants’ words, facial expressions, gestures and reactions were captured. notes were recorded immediately after the interview by the researcher, in the participant’s presence, and are duly reflected in the researcher’s analytical memos. secondly, the researcher organised, ordered and stored data (molefe 2024). details of time, location and attendant comments were recorded on all transcripts and field notes. data were recorded, re-checked and labelled by the researcher. data were read, and themes, emotions and surprises were considered. reflective and in-depth reading of the data was done to find supportive evidence for themes. data was reread to identify elements that might have been overlooked. the researcher then searched for possible alternative meanings and attempted to link discrepancies (molefe 2024). thirdly, the researcher coded and categorised data. coding was used to explore the data and single out words used by participants. the researcher resorted to open coding, which entailed labelling specific pieces of data. coding was done paragraph by paragraph. the researcher started with a mass of codes that were reduced until each one represented a specific concept. the researcher made use of data reduction to reduce the volume and thereby reduce the list of themes (molefe 2024). lastly, themes and sub-themes were identified, presented cohesively and interpreted to produce findings. the researcher used a co-coder who coded independently, following the same steps of data analysis. an online meeting was held between the researcher and the co-coder to discuss identified codes. there were similarities in the themes and sub-themes of the researcher and the co-coder, except in one code where there were differences. following thorough deliberations, a consensus was reached regarding the acceptable code. trustworthiness five testing criteria for trustworthiness were observed: credibility, dependability, confirmability, transferability and authenticity (molefe, sehularo & koen 2022; polit & beck 2021). credibility was attained by transcribing interviews verbatim, involving a co-coder during data analysis, and doing triangulation, achieved by using semi-structured individual interviews, as well as taking field notes. dependability was attained through the description and application of the research methodology, providing an audit trail and involving a co-coder during data analysis to verify the findings. confirmability was attained by ensuring that the researcher’s bias, motivation or interest did not shape the findings; hence, the researchers ensured that the data represented the information that participants provided. transferability was attained through a thick description of the research methodology and triangulation. the study will be published with sufficient data to enable readers to conclude whether transferability can be possible. authenticity was attained by ensuring that the report conveys perceptions of care assistants and nothing more (molefe, sehularo & koen 2024). ethical considerations ethical clearance to conduct this study was obtained from the north west university health research ethics committee (nwu-hrec) of (no. nwu-00462-20-a1). permission to access the facilities was granted by the chief executive officers of the six facilities. the ward managers permitted interviews with care assistants and even provided their offices for the discussions. participants gave their voluntary informed consent to participate and agreed to be audio-recorded. participants’ names were not used; instead, codes were assigned, for example, p-1. results of the 20 who agreed to participate, 4 were males and 16 were females. table 3 provides a summary of the identifying characteristics of the participants. table 3: demographic information of participants. the results revealed three themes: a lack of training opportunities, a lack of resources and a lack of support. themes had sub-themes identified. table 4 provides a summary of identified themes and sub-themes. table 4: themes and sub-themes. theme 1: a lack of training opportunities training refers to short-term courses designed to give employees additional knowledge, practice skills and improve their work performance (molefe et al. 2024). training may further continue beyond initial competence to maintain, upgrade and update skills throughout working life (himam 2022). the three sub-themes are non-attendance of workshops, non-attendance of in-service training and no study leave opportunities. sub-theme 1.1: unavailability of workshops a workshop is a structured and interactive session designed to create an environment for meaningful work and to guide people through a process that will lead to great outcomes. the aim is to encourage learning, collaboration, problem-solving or the creation of new ideas (matthews 2022:399). participants cited that they were not given opportunities to attend workshops: ‘managers do not want to send us to workshops. they always cite a lack of funds and shortage.’ (p-4, 51 years, female, care assistant with 12 years’ experience) ‘we are clueless when it comes to cerebral palsy because we were not trained in psychiatry, hence we do not provide quality care to children.’ (p-7, 51 years, female, care assistant with 7 years’ experience) participants further emphasised the need to attend workshops, and further recommended that managers consider sending them to attend workshops: ‘it is important for us to attend workshops because they will help us to improve our skills and knowledge regarding cerebral palsy.’ (p-11, 31 years, female, care assistant with 10 years’ experience) ‘managers must consider sending us for workshops that will improve our skills and knowledge.’ (p-18, 40 years, female, care assistant with 8 years’ experience) sub-theme 1.2: unavailability of in-service training in-service training is an essential component of vocational education and training in south africa. it provides learners with the opportunity to apply theoretical knowledge and practical skills in a real workplace environment (jackson, jowsey & honey 2019). participants cited that they were not given opportunities to attend in-service training on cerebral palsy: ‘we are not given opportunities to attend in-service training. only professional nurses are prioritised when there is training.’ (p-1, 52 years, female, care assistant with 10 years’ experience) ‘only if they can allow us to attend in-service training, we can improve in provision of care to the children.’ (p-13, 36 years, female, care assistant with 6 years’ experience) participants further cited that in-service training is necessary for them so that they can improve their skills and knowledge relevant to caring for children with cerebral palsy: ‘i am convinced that information provided during in-service training can assist us to improve knowledge and skill of cerebral palsy.’ (p-20, 43 years, male, care assistant with 12 years’ experience) ‘managers need to invest in regular in-service training because, for those of us that were not trained to care for children with intellectual disabilities, the training will assist us a lot.’ (p-6, 53 years, female, care assistant with 14 years’ experience) sub-theme 1.3: denied study leave opportunities study leave means leave days provided to employees to pursue undergraduate or postgraduate studies, or professional training which will increase or broaden the competencies of employees (kauhanen 2020:653). according to participants, they were denied study leaves, hence their knowledge of cerebral palsy was not broadened: ‘when we apply for study leave, we are being denied.’ (p-2, 34 years, male, care assistant with 7 years’ experience) ‘it is very painful that we lack knowledge of cerebral palsy, but when we ask for study leave to engage in programmes that teach care for children with cerebral palsy, our manager refuses.’ (p-15, 42 years, male, care assistant with 5 years’ experience) participants further recommended that managers grant them study leave days to enrol in courses about cerebral palsy. they believe that upon completion, the facility will benefit as they will be able to provide quality care to children: ‘they must grant us study leave so that we improve our skills on how to care for children.’ (p-7, 33 years, female, care assistant with 7 years’ experience) theme 2: a lack of resources the resource is a non-directional physical, psychological, social or organisational characteristic that functions to achieve work goals or reduce demands on the physiological and psychological costs of work (lee, rocco & shuck 2019:10; molefe et al. 2024). participants cited a lack of resources. sub-theme 2.1: absence of medical equipment to provide care medical equipment includes articles, instruments, apparatus or machines used in the prevention, diagnosis, treatment and management of diseases, or for detecting, measuring, restoring, correcting, or modifying the structure or function of the body for some health purpose (molefe et al. 2024; zonani et al. 2021). the absence of medical equipment frustrated the participants: ‘there are no wheelchairs, lifting machines, pressure sores cushions for children.’ (p-15, 42 years, male, care assistant with 5 years’ experience) ‘our backs are painful due to lifting children because there is no equipment that assists in lifting.’ (p-17, 32 years, female, care assistant with 7 years’ experience) recommendations for purchasing equipment were made by participants: ‘managers need to buy medical equipment that will assist us to render quality care, and not to injure ourselves.’ (p-9, 28 years, female, care assistant with 5 years’ experience) sub-theme 2.2: staff shortage in health facilities, adequate staffing is key. the basic principle is that healthcare providers must have sufficient staff on duty to provide care safely and effectively (ball & griffiths 2022:872; molefe et al. 2024). participants cited that their facilities have insufficient staff: ‘there is a serious shortage. we are only four, and we take care of fifty children.’ (p-13, 36 years, female, care assistant with 6 years’ experience) ‘one person is allocated to care for close to ten children alone. the children are heavy, and the job is too much for one person to manage.’ (p-18, 40 years, female, care assistant with 8 years’ experience) ‘we cannot even take leave because of shortage.’ (p-3, 54 years, female, care assistant with 8 years’ experience) participants pleaded for managers to employ more care assistants: ‘they must employ more staff to ease the burden of caring.’ (p-12, 30 years, female, care assistant with 8 years’ experience) ‘caring for helpless children is hectic. more care assistants must be employed.’ (p-15, 42 years, male, care assistant with 5 years’ experience) ‘they must request increment of budget so that they employ more staff.’ (p-4, 42 years, female, care assistant with 12 years’ experience) theme 3: a lack of support support is showing care and compassion for another person, and it is a critical way of achieving patient-centred care, and a lack of staff support contributes to poor delivery of care for patients (bradshaw et al. 2022). participants cited a lack of support, particularly emotional support. sub-theme 3.1: absence of counselling services counselling is a process that involves a trained counsellor helping individuals to find ways to work through and understand their problems. it promotes a healthy lifestyle and improves the quality of life and overall health (kariemlou et al. 2019; molefe et al. 2024). according to participants, the facilities had no counselling services where their emotional well-being could be addressed: ‘we are overwhelmed, stressed, and frustrated. there are no counselling services. we always ask to be referred for counselling, but nobody is listening.’ (p-11, 31 years, female, care assistant with 10 years’ experience) ‘caring for these children is emotionally draining and depressing. we need de-briefing sessions, but our pleas are being ignored.’ (p-6, 53 years, female, care assistant with 14 years’ experience) participants further recommended counselling services in the facility: ‘managers must organise counselling service of psychologists or professional counsellor.’ (p-18, 40 years, female, care assistant with 8 years’ experience) ‘we must be allowed de-briefing sessions once a week.’ (p-16, 29 years, female, care assistant with 4 years’ experience) sub-theme 3.2: no appreciation, incentives or recognition incentives, recognition and appreciation are things that motivate or encourage a person to do something and can include a payment, or a concession to stimulate greater output or investment. they are the reasons employees feel energetic and motivated towards their work (liu & liu 2022; molefe et al. 2024). participants cited the lack of the three in their facilities: ‘we do not get incentives for work well done, not even verbal appreciation, yet we work so hard.’ (p-10, 31 years, female, care assistant with 7 years’ experience) ‘managers always cite lack of funds being the reason we cannot get incentive. this is not fair.’ (p-13, 36 years, female, care assistant with 6 years’ experience) ‘even a certificate of appreciation will motivate us because we cannot be rewarded with money because we are told that there is not enough budget.’ (p-20, 43 years, male, care assistant with 12 years’ experience) participants further recommended the need for managers to introduce incentive bonuses to motivate staff: ‘managers must request an increase in budget so that they give us incentives at the end of the year. many companies reward their employees at the end of the year, and this motivates staff to even work harder. for us, there is nothing that motivates us.’ (p-2, 34 years, male, care assistant with 7 years’ experience) discussion the first objective of this study was to explore and describe the experiences of care assistants of children admitted with cerebral palsy. identified themes with their sub-themes provided insight into what care assistants experience when caring for children with cerebral palsy. the lack of knowledge as experienced by care assistants, is a revelation regarding the importance of training opportunities in the working environment. training can be in the form of workshops, in-service training and study leave opportunities. employee training and development serves as a tool that not only enhances the competencies required to perform a job, but also provides a means to assist individuals in feeling more satisfied with the results of their performance (rodriguez & walters 2017). a lack of training therefore contributes to poor job performance and low self-esteem (yimam 2022). workshop attendance is important in acquiring state-of-the-art knowledge on external developments as a dominant source of competitive advantage for the organisation. furthermore, attending workshops is an important way of learning from other professionals in the same occupational field outside the organisation where one is employed (de grip & pleijers 2019). in-service training, on the other hand, assists in maintaining, upgrading and updating skills throughout working life (himam 2022). managers must therefore allow employees to attend training and workshops to better their performance in caring (yimam 2022) and further approve study leave applications. a lack of resources as experienced by care assistants is a trigger for frustration during the provision of care. when the resources to provide quality care are limited or unavailable, healthcare workers become overwhelmed. with healthcare resources, people’s life expectancy increases, and overall mortality declines (raghupathi & raghupathi 2023). a shortage of resources such as special wheelchairs, lifting machines, supporting cushions, linen, disposable nappies, special feeding utensils and staff shortage become a barrier that may reduce access to health services and increase the risk of poor health outcomes (qiu et al. 2022). it is advisable for the managers to review the budget and request more funding so that the issue of inadequate resources can be adequately addressed. a lack of support experienced by care assistants, especially emotional support, predisposes staff members to psychological difficulties. without emotional support, the psychological well-being of care assistants may deteriorate, resulting in depression, which can affect the quality of care given to children (mbugua, kuria & ndetei 2021). managers must implement psychological support strategies such as listening to an employee’s concerns, allowing employees to talk about their emotions and delivering encouragement and guidance to help employees regulate their emotions (molefe et al. 2024; pohl et al. 2022). a study by schlebusch et al. (2024) proves that supporting caregivers of children with developmental disabilities enormously improves the well-being of caregivers. the study used the world health organization (who) caregiver skill training (cst) caregiver well-being module programme to address caregivers’ psychological challenges during caring. the aim was to establish a mindfulness-based behavioural therapy that builds and promotes psychological flexibility. before the application of the programme, caregivers reported high levels of psychological distress, depression and anxiety. however, after the programme, caregivers showed positive improvements in the expected directions on all the mental health and well-being measures. the programme provides strong evidence that the support initiative improves the well-being of healthcare workers, including care assistants of children with cerebral palsy. the second objective of this study was to develop a support programme for care assistants of children admitted with cerebral palsy, which leads to the next step: the development of the support programme. development of a support programme a support programme was developed by following the donabedian model for quality care (2005), considering the aforementioned interview results. donabedian’s model refers to the environment and the resources necessary to provide services (lo porto 2020) and assesses the environment in which healthcare workers perform their duties to ensure care provision. the model is further used to develop and describe a psychosocial model for enhancing psychosocial support for healthcare workers during coronavirus disease 2019 (covid-19) and other public health emergencies (moyo, tshivhase & mavhundu-madzusi 2023). when care providers do not receive the support needed to perform their duty to care, it means a positive outcome on care, which is quality, will never be reached. it is for this reason that the researcher found the model to be relevant for the development of a support programme for care assistants of children admitted with cerebral palsy in the hospital. the model was followed by applying the social exchange theory. social exchange theory comprises actions contingent on the rewarding reactions of others, which over time provides for mutually rewarding transactions and relationships (lo porto 2020). implications to social change may include improving the organisational policies and procedures that will align with the guidelines specified in the core competencies of the care assistants. once the core competencies are aligned with organisational policies, job satisfaction, work performance and morale will improve, ultimately enhancing the delivery of healthcare services. furthermore, this alignment will promote the worth, dignity and development of care assistants. the theory further emphasises that perception plays a crucial role in the implementation of services. therefore, it is important for care assistants to have a positive perception of their organisation, one that reflects a commitment to human impact, moral goodness and unconditional social improvement (lo porto 2020). the model has three steps: structure, process and outcome (spo). the steps are explained and summarised in figure 1. figure 1: programme of support for care assistants of children admitted with cerebral palsy in the hospital. structure the structure includes all factors that affect the care delivery context, such as physical facility, equipment, human resources and organisational characteristics such as staff training and payments (donabedian 2005; moyo et al. 2023). results obtained during data analysis informed the researcher on what structural aspects would impact quality care for children and care assistants. the structure of this study therefore includes managers’ commitment, adequate staffing, adequate equipment, recognitions, incentives and adequate pay, learning opportunities for staff and counselling services for staff. these resources are necessary to not only ensure quality care to the children, but also to ensure the holistic well-being of care assistants, thus supporting care assistants. process the process is the sum of all actions that make up healthcare, and it contains all acts of bettering healthcare delivery (donabedian 2005). the process relates to the institutional support that ensures that all healthcare providers experience job satisfaction (moyo et al. 2023). the identified process of the study includes revision of policies (study policy, staff support policy, incentives policy and staffing policy), mentorship programmes and human resource (hr) workshops. to ensure improvement in quality care for children and the well-being of care assistants, aspects related to the process should be revised to address the identified gaps that hinder quality care for children, which eventually lead to stress and frustration among care assistants. outcome the outcome is an objective to be achieved (donabedian 2005). outcomes are further referred to by moyo et al. (2023) as the end results that have an effect on the recipients (healthcare workers) in providing care. evidence of an outcome includes changes to health status, behaviour or knowledge, as well as patient and staff satisfaction, and health-related quality of life. outcomes of the study include staff satisfaction, low staff turnover, improvement in quality of care for children and reduction in children mortality rate. achievement of such outcomes will promote the holistic well-being of care assistants. validation of a programme before the implementation process, the programme was validated using the delphi technique. a team of experts, consisting of multidisciplinary members (psychologists, psychiatrists, social workers, professional nurses and researchers) from healthcare facilities, was identified. validation questionnaires were developed and distributed to the team members. the validation process occurred in three rounds. the first round involved distributing yes or no questions. the second round included structured questions focussing on whether the programme would be beneficial to the care assistants and identifying areas for improvement. in the third round, a summary of the results from the first two rounds was circulated to the participants for review, allowing them to confirm whether the summary reflected their views. all feedback from the experts was positive, confirming that the programme is relevant and will yield positive results. implementation of a programme of support during implementation of the proposed programme of support, five key areas will be applied, namely, a multidisciplinary team approach, focused management, stakeholders support, open communication, and in-service training. each key area is designed to address a specific stressor identified by care assistants. figure 2 summarises the how, where, by whom and with what resources will the programme be implemented. figure 2: implementation of a programme of support. the programme advocates that multidisciplinary team members must be committed to supporting care assistants. this includes doctors, physiotherapists, speech therapists, occupational therapists, dietitians, counsellors and any other healthcare professionals involved in the care of children. each member must be willing to play their part in assisting care assistants in providing care. for example, if a physiotherapist does not visit the children to provide exercises, the responsibility falls on the care assistants. if children develop contractures, care assistants will be the first to be blamed, as they are with the children 24-h a day. this can lead to care assistants feeling overwhelmed and stressed. the second key area focusses on effective management. managers are expected to support caregivers by being empathetic and listening to the concerns raised by care assistants. they should assist care assistants in negotiating a better remuneration package with the human resources department and review and revise policies that disadvantage care assistants. stakeholder support means that entities such as the department of health must back facilities caring for children by providing an adequate budget to ensure that both human and material resources are sufficient. there must be open communication among everyone directly involved in care. for example, the manager needs to create an environment where care assistants can express their concerns, frustrations and dissatisfactions without fear of retaliation or discrimination. managers should ensure that care assistants have opportunities to attend in-service training and workshops, which will enhance their self-esteem and confidence in providing care. mental healthcare professionals in various hospitals in gauteng were asked to validate the programme. it was found to be clear, feasible and relevant to achieving the goal of supporting care assistants. limitations the study was confined to one province of the country, leaving the experiences of care assistants in other provinces unknown. consequently, because of the qualitative nature of the research, the findings cannot be generalised to other provinces. however, the results are likely to apply to other settings in south africa, as the identified themes address universal issues that can be used to improve the conditions of care assistants nationally. conclusion the study explored and described the experiences of care assistants working with children admitted with cerebral palsy. three themes emerged, namely, a lack of training opportunities, a lack of resources and a lack of support. the conclusion is that care assistants for children with cerebral palsy do not have adequate skills and knowledge to provide care because they are not afforded opportunities to improve their skills and knowledge, there are no resources to provide care and they are not supported. these findings were used to develop a support programme for care assistants. if effectively utilised, the support programme can improve the working conditions of care assistants, thus promoting staff satisfaction and eventually provision of quality care for children. the programme can be applied in other healthcare facilities both nationally and internationally because it is possible that challenges encountered by care assistants could be similar across some countries. acknowledgements the authors would like to acknowledge the participants of the study, the various authors of the articles used and mr mokgaola, a co-coder. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.l.m. collected and analysed data and wrote the article. l.a.s. and m.p.k. supervised the project and co-wrote the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data supporting the findings are available on reasonable request from the author, l.l.m. the data are not publicly available because of ethical restrictions on anonymity and confidentiality. transcripts and audio data contain information that would compromise the privacy of the research participants of the study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references ahmad, r., nawaz, m.r., ishaq, m.i, khan, m.m. & ashraf, h.a., 2022, ‘social exchange theory: systematic review and future directions’, frontiers in psychology 3, 1015921. https://doi.org/10.3389/fpsyg.2022.1015921 ames, h., glenton, c. & lewis, s., 2019, ‘purposive sampling in a qualitative evidence synthesis: a worked example from a synthesis on 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sousse, tunisia sahbi mtawaa department of physical medicine and rehabilitation, faculty of medicine of sousse, university hospital of kairouan, kairouan, tunisia emna toulgui department of physical medicine and rehabilitation, faculty of medicine of sousse, university hospital of sahloul, sousse, tunisia rihab moncer department of physical medicine and rehabilitation, faculty of medicine of sousse, university hospital of sahloul, sousse, tunisia walid wannes department of physical medicine and rehabilitation, faculty of medicine of sousse, university hospital of sahloul, sousse, tunisia khaled maaref department of physical medicine and rehabilitation, faculty of medicine of sousse, university hospital of sahloul, sousse, tunisia sonia jemni department of physical medicine and rehabilitation, faculty of medicine of sousse, university hospital of sahloul, sousse, tunisia citation marwa, g., mtawaa, s., toulgui, e., moncer, r., wannes, w., maaref, k. et al., 2022, ‘quality of life and its predicting factors for tunisian children with cerebral palsy’, african journal of disability 11(0), a1046. https://doi.org/10.4102/ajod.v11i0.1046 original research quality of life and its predicting factors for tunisian children with cerebral palsy ghanmi marwa, sahbi mtawaa, emna toulgui, rihab moncer, walid wannes, khaled maaref, sonia jemni received: 24 mar. 2022; accepted: 07 aug. 2022; published: 15 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: cerebral palsy (cp) can cause motor, sensory, perceptual, cognitive, communication and behavioural disorders. the complexity of this condition justifies measuring the quality of life (qol) of children with cp. this measurement depends on personal and socio-economic factors, hence the relevance of performing it in our cultural context of tunisia. objectives: the objectives of this study were to assess the qol of tunisian children with cp and to identify predictive factors for qol. method: a cross-sectional study using a self-administered questionnaire (the cp qol-child) was employed. it included 68 children with cp and their parents who consulted the outpatient clinics of physical medicine and rehabilitation of the university hospital of sahloul sousse. results: the qol of children with cp was altered, and the mean total score for the cp qol-child was 59.3 (± 14). all domains were affected by this alteration. six predictive factors for lowered qol in children with cp were identified, namely age older than 6 years, swallowing disorders, more intense chronic pain, greater level of motor impairment, the use of botulinum toxin injection and the absence of verbal communication. conclusion: intervention with children with cp must be mindful of their altered qol. five out of the six predictive factors of qol are modifiable through a multidisciplinary approach within the framework of the international classification of functioning, disability and health (icf). contribution: the multiplicity of the factors associated with qol revealed by this study incites clinicians to adopt the icf approach by displaying its practical implications on the efficiency of the medical intervention. keywords: cerebral palsy; quality of life; cp qol-child questionnaire; child; icf. introduction cerebral palsy (cp) refers to a group of pathologies secondary to a non-progressive injury of the developing central nervous system occurring in a child under three years of age. this injury can cause motor disorders often associated with sensory, perceptive, cognitive, communication and behaviour disorders, epilepsy and secondary musculoskeletal problems (rosenbaum et al. 2007). it is the most common cause of disability in children in developed countries with a prevalence range from 1.4 to 2.1/1000 live births (galea et al. 2019). results from developing countries are divergent but an overall higher prevalence ranging from 3.4 to 4.1/1000 live births is reported (gladstone 2010; serdarog 2006). data concerning prevalence of cp in tunisia is unknown because of the lack of a dedicated register. cerebral palsy can cause functional deficits and the inability to perform daily-life activities, which, as a result, compromise functional independence, participation in social life and quality of life (qol). in 2006, varni conducted a study comparing qol measured by a generic self-administered questionnaire, in children diagnosed with multiple chronic conditions (10 chronic conditions, 33 categories according to severity) and children in good apparent health. the most altered qol was found in children with cp (varni et al. 2006). the international classification of functioning, disability and health (icf) offers a more comprehensive and standardised approach to study the impact of disabling diseases, such as cp, on functioning (meucci et al. 2014) by integrating the bio-psycho-social dimensions into the management strategy. this classification has also identified the concept of qol as the main objective of all therapeutic interventions. the study of qol of patients has thus gradually become an important measure to evaluate the effectiveness of treatments for children with cp (maenner et al. 2016). as defined by the world health organization (who), qol is the individual’s perception of their place in life, in the context of their cultural and value system and in relation to their proper goals and concerns (kuyken et al. 1995). therefore, the measurement of qol must include the opinions and perceptions of patients and their families. then, it must be based on the use of standardised and validated questionnaires. among the most used, are the cerebral palsy quality of life questionnaire for children (cp -qol-child) (waters et al. 2009), the child health questionnaire (chq) (schneider et al. 2007) and the european generic health-related qol questionnaire (kidscreen) (ravens-sieberer et al. 2005). others are less used, such as the paediatric quality of life inventory (varni et al. 2006) and the caregiver priorities and child health index of life with disabilities (narayanan et al. 2006). cerebral palsy quality of life-child was selected by a systematic review of the literature published in 2014 as the most appropriate measurement instrument that takes into account all the characteristics of cp while representing the concepts of the icf (schiariti et al. 2014). the strength of cp qol-child is shown through its design, which took into account the perceptions and experiences of children with cp and their families (waters et al. 2006). indeed, many researchers consider the cp qol-child to be the gold standard for this evaluation (davis et al. 2010). the cp qol-child was validated through extensive research with good test–retest reliability, construct validity and internal consistency (waters et al. 2006). this instrument was also translated and validated in arabic with excellent test–retest reliability, good internal consistency, an intraclass coefficient between 0.88 and 0.97 and a cronbach’s alpha coefficient, which exceeds 0.7 (el-weshahi et al. 2017). the starting age of 4 years was chosen because it is the ideal age for cp diagnosis. children over 12 years old were not included as it is possible that new issues, such as body image, pressure from school and employment, will arise during adolescence. the main objective of this study is to assess the qol of children with cp by the cp qol-child questionnaire and to determine predictive factors for lowered qol. research methods and design study design this study employed a cross-sectional design commonly used to investigate associations between risk factors and the outcome that is qol. this design is useful for public health issues such as cp and for the generation of hypotheses but it is limited in time (wang & cheng 2020). setting data collection took place in physical medicine and rehabilitation outpatient clinics of the university hospital of sahloul, sousse between 01 september 2019 and 31 march 2020. parents taking care of these children were also included. there are only six outpatient clinics for physical medicine and rehabilitation in tunisia. those of the university hospital of sahloul receive patients from all over the centre and the east region of the country. study population all the children with cp, aged from 4 to 12 years old and their parents were included. however, those who were also diagnosed with genetic syndromes, heart disease, diabetes or cancer and those with acute traumatic or infectious disease were excluded. also, parents who refused to answer the questionnaire and those who did not have verbal or written skills in arabic to complete the measuring instruments and the consent form were excluded. among the 123 children who presented with cp and their parents during the data collection period, of which 68 were included in this study. data collection within the framework of the icf, a trained physiatrist collected information about age, gender, patient history (comorbidities, medical and surgical neuro-orthopaedic interventions), socioeconomic status (household area, the parents’ level of education, the parents’ profession, monthly income, health insurance, the number of siblings, if they had a sibling with disability), type of school the child attends (kindergarten, mainstream school, school for learners with special educational needs). then, he conducted a physical examination including a neurological, neurosensory and neuromotor assessment, an algo-functional assessment by the visual analogue scale (vas) and the gross motor function scale (gmfcs) and a psychological assessment using self-administered questionnaires (hariz et al. 2013; pashmdarfard et al. 2017; suleiman, hadid & duhni 2012): the child depression rating score (cdrs) the screen for child anxiety related disorder (scared) in its arabic version for anxiety and the pittsburg sleep quality index (psqi) in its arabic version for the subjective assessment of sleep quality. quality of life was measured using the cp qol-child. it assesses seven areas of qol, namely ‘social well-being and acceptance’ (swa); ‘feelings about functioning’ (faf); ‘participation and physical health’ (php); ‘emotional well-being and self-esteem’ (ews); ‘access to services’ (as); ‘pain and impact of disability’ (pid) and ‘family health’ (fh). cerebral palsy quality of life-child is made of two versions to be used together when possible: the proxy reported version containing 66 items, and the self-administered version containing 52 items. the self-administered version was used according to the manual of instructions in children with cp aged between 9 and 12 years old and having preserved intellectual level and verbal communication. where the use of both versions was possible, the scores of the two versions for each domain were averaged and used in the analytical study (waters, boyd & reddihough 2013). definitions of variables monthly household income: a monthly household income of less than 1000 tunisian dinars was considered low, moderate when between 1000 and 1400 dinars and good when above 1400 dinars. intensity of chronic pain: in accordance with the recommendations of the high authority for health, the patient’s pain was considered weak for a vas between one and three, moderate when it is between four and five, intense between six and seven and unbearable for a vas greater than or equal to eight. anxiety disorder: it was diagnosed for a scared score > 25. clinical depression: it was defined by a cdrs score greater than or equal to 30. sleep disorder: it was retained with a psqi score > 5. motor function impairment: it was defined functionally by the gmfcs classification system. quality of life scoring: the response to each question was converted into a percentage varying from 0 to 100 according to the coding algorithm (waters et al. 2013). one hundred corresponding to the highest possible qol according to the child with cp and or the parent included. then, the average of the percentages of the predefined responses for each domain was calculated. seven averages of percentages varying from 0 to 100 were thus obtained. the cp qol-child total score (cp-qol total) is the average of the seven domains. the higher the cp-qol total, the better the qol. data analysis the collected data were saved and analysed using spss version 22 ‘statistical package for social sciences’ software. qualitative variables were described by counts and percentages. quantitative variables with normal distribution were described as means and standard deviations, those with non-normal distribution were described as medians with interquartile ranges. the association between qol and 44 elements the icf was analysed. comparisons of two means were made using student’s t-test for independent samples. comparisons of multiple means were made using the anova test. to determine the predictive factors of cp qol-child score, a multiple linear regression was performed. the normal distribution of this score was checked graphically beforehand. when the linearity between the quantitative variables and the cp qol-child score was not applicable, they were transformed into qualitative variables. factors that were associated with changes in cp qol-child scores with a p < 0.20 were included in the model. after obtaining the final model, the conditions of normality, linearity and homoscedasticity of the residuals were verified. a significance level of 5% was set for all statistical tests performed. ethical considerations this study design was approved by the committee of ethics of the faculty of medicine of monastir tunisia. we obtained written consent of the author of the validated arabic version of the cp-qol questionnaire. also, free and informed written consent for participation and publication of the parents accompanying the child with cp was obtained after using forms detailing the purpose and modalities of participation. we ensured confidentiality by anonymous coding of the files that were kept in a specific binder. the study design was approved by the committee of ethics of the faculty of medicine of monastir tunisia. results descriptive study the parent caring for the child with cp who responded to our questionnaire was the mother 97.1% of the time. the age of the children varied between 4 and 12 years with a mean age of 7.99 (± 2.82). gender ratio was 0.83. a total of 98.5% of the parents were living together. only 4.4% of the included children with cp had no siblings. mean siblings’ number was 2.12. twenty-three children with cp (33.8%) had a brother or sister with disability. the vas score ranged from 0 to 9 with a median of 0 and an interquartile range of 0–2.25. seven children with cp or 9.8% of our population, had a scared score > 25, which indicates the presence of anxiety. the assessment of the quality of sleep in children with cp showed an average psqi value of 6.75 (± 6.04). a total of 37.9% of the children with cp presented with sleep disturbance (psqi > 5). a cdrs score of > 30 was indicative of clinical depression in 4.41% of the children with cp. a total of 51 participating children with cp (75%) benefited from regular rehabilitation with a frequency of three sessions per week in 61.8% of cases. difficulty in accessing functional rehabilitation was reported by 29.4% of participating parents. only 8 children (11.8%) received speech therapy (table 1). table 1: biographical information of children with cerebral palsy and their families (n = 68). the mean total cp qol-child score (cp-qol total) was 59.3 (± 14.0). the means of the various domains measured are detailed in table 2. the mean confidence of mothers in understanding their children’s feelings was 75.2 (± 21.2) (table 2). table 2: results of the cerebral palsy quality of life-child calculated in children with cerebral palsy. both versions of cp qol-child could be used in 10.3% of children. no statistically significant differences were found when comparing the results of the cp-qol child calculated from the self-administered and the proxy-reported versions table 3. table 3: comparison of the results of the cerebral palsy quality of life-child calculated from the two versions in children with cerebral palsy aged over 9 years with normal intellectual capacities and possible verbal communication. analytical study univariate study of the quality of life of children with cerebral palsy fathers working in the public sector had better cp-qol total scores for their children (p = 0.042). in addition, the mean cp-qol total was significantly higher in children integrated in kindergartens, mainstream schools or schools for learners with special educational needs compared with non-integrated children (p < 0.001). children with an intellectual disability had a significantly more altered qol (p = 0.006). cerebral palsy-quality of life total values were significantly higher in children with verbal communication (p ≤ 0.001). children with cp who drool had significantly lower qol than in absence of drooling (p ≤ 0.001). in contrast, the presence of swallowing disorders was not associated with a difference in cp qol-child scores (p ≤ 0.102). cerebral palsy quality of life-child scores in children with cp with vesico-sphincteric disorders were significantly lower than in the absence of these disorders (p ≤ 0.001). the cp-qol total was significantly higher in the hemiplegic form than in the diplegic form. the quadriplegic form of cp was associated with the most altered qol (p < 0.001). likewise, a significant difference between the cp-qol total scores according to the gmfcs classification levels was found. the higher the gmfcs, the lower the total score of the cp-qol questionnaire, indicating a more impaired qol (p < 0.001). the intensity of chronic pain was also associated with a significant difference in qol. in fact, the more intense the pain, the lower the scores, that is, the more the qol is altered (p = 0.005). however, the spastic form was not associated with an alteration in qol (p = 0.485). furthermore, cp-qol scores were significantly lower in children with cp who have sleeping disorders as revealed by the psqi score (p = 0.042). finally, no significant difference between cp-qol total scores in children with cp who underwent different kinds of therapeutic interventions was found (table 4). table 4: relationship between quality of life in children with cerebral palsy and socio-demographic, economic, clinical and therapeutic information. table 4 (continues...): relationship between quality of life in children with cerebral palsy and socio-demographic, economic, clinical and therapeutic information. multivariate analysis factors integrated in the initial model of multiple linear regression were 18. the most influencing factors on the qol of children with cp identified by our analyses were age over 6 years, the presence of swallowing disorders, the level of the motor impairment assessed by the gmfcs, the intensity of chronic pain and the use of botulinum toxin, which had a negative influence on the total cp-qol score. in contrast, children with cp with sustained verbal communication had better qol than those with little or no functional speech (table 5). table 5: the predictive factors of quality of life of children with cerebral palsy objectified by cerebral palsy-quality of life total. discussion the mean score of the cp-qol child in this study was lower than those found by most of the studies carried out in developed countries (davis et al. 2010), but also in developing countries (angreany et al. 2015; atasavun uysal et al. 2016; braccialli et al. 2016; power et al. 2018; soleimani et al. 2015). only one study using the arabic version of the cp qol-child, which was carried out in egypt, found lower values than in the study at hand (el-weshahi et al. 2017) (table 6). table 6: comparative table of the means of total score of cerebral palsy quality of life questionnaire between the different studies in the literature. this divergence could be explained by the sociocultural differences and the difference between the characteristics of the populations studied and the therapeutic behaviours. in fact, the predominant topographic distribution in our population was quadriplegia (58.8%), followed by hemiplegia (22%). all areas of qol are affected by cp. the best score was observed for the area of ‘social welfare and acceptance’ (73 ci = [70.0; 78.0]). the area with the lowest score was the ‘pain and feelings of disability’ (39 ci = [34.9; 43.3]). these same results were found by the various published studies. also, cp affects the whole family as indicated in this study’s results with the low score around ‘family health’ compared with other areas. indeed, several studies that have evaluated the burden of this condition on caregivers have concluded that parents experience a difficult ordeal and see their mental, physical and psychological state affected by the presence of a disabled child in the family (ben salah frih et al. 2010; brehaut et al. 2004; davis et al. 2010) (table 7). table 7: comparative tables of the means found in the literature in each of the domains of the cerebral palsy quality of life-child. in children with cp for whom both versions could be used, the self-administered version completed by the child and the proxy-reported version completed by the parents, comparable results in the different domains, as well as for the cp-qol total were found. these results were in agreement with the results of waters et al. (2006). thus, it can be concluded that in the presence of difficulties preventing the child from completing the questionnaire themselves, the parents’ responses offer a good estimate of the children’s qol (waters et al. 2006). it should also be observed that several studies using other scores found that children with cp report better qol than reported by their parents because of the added anxiety and stress of the parent (makris, dorstyn & crettenden 2019), hence the relevance of using both versions when possible, and the importance of completing the qol assessment by referring to other stakeholders such as siblings, teachers, school friends and the healthcare team. ten factors were associated with qol in children with cp. the identified factors can be classified according to the icf in deficiencies of the organic functions (intellectual or speech deficit, drooling, vesico-sphincteric disorders, the intensity of the pain and the topographic form of the injury), limitation of activities (gmfcs score), restriction of participation (school integration), personal factors (sleep disorders) and environmental factors (father’s profession). these results encourage clinicians to investigate further all aspects of the bio-psycho-social model for they have a quantifiable repercussion on qol. the multiplicity of these factors reflects the complexity of the initial assessment and the need for multidisciplinary management. six predictive factors for qol were found, namely age, verbal communication, intellectual disability, motor impairment, pain intensity and the use of botulinum toxin. this model did not contain socio-demographic and economic factors, which is in line with the results found in 2017 by rappas part of the sparcle study (thorley et al. 2012) where a longitudinal study of qol measured by kidscreen among adolescents with cp was conducted. on the other hand, they did not find a predictive value for motor impairment. this divergence is explained by the difference in target populations and measurement tools. a recent study carried out in bangladesh using the cp-qol teens, published results similar to the study in hand (power et al. 2020). the multiplicity of factors associated with qol reported by this study and in the literature, requires us to be vigilant in interpreting the results. language disorders were a predictive factor for a lowered qol. these results have been reported in the literature by several studies (dobhal et al. 2014; mezgebe et al. 2015; power et al. 2020). they highlight the value of speech therapy, augmentative and alternative communication strategies and tools in improving qol. a future study with this focus might highlight the human rights of children with cp when using assistive devices and technology for communication. consistent with the results of the studies of the sparcle project (arnaud et al. 2008; dickinson et al. 2007), a significant negative association between the intensity of pain and the qol in child cp was found. it was among the predictors of qol. in fact, the more intense the pain was, the more the qol was altered. these results are consistent with the literature (fairhurst et al. 2019; mckinnon et al. 2019; parkinson et al. 2013; penner et al. 2013; radsel, osredkar & neubauer 2016; ramstad et al. 2011). some authors using different measuring instruments from ours came to the same conclusions (cristina et al. 2017; schmidt et al. 2006). indeed, it was shown through research published in 2016 that the presence of pain and the age of the child with cp explained approximately 14% of the variation in qol (findlay et al. 2016). the negative impact of pain on participation was explained by the fact that the discomfort caused by pain increases the rate of school absenteeism and results in restriction of participation in daily activities and family activities, leading children with cp to spend more days in bed (houlihan et al. 2004). analyses showed that the higher the level of motor impairment according to the gmfcs, the lower the cp-qol total. this joins several studies on the subject (khare & prajapati 2013; pashmdarfard et al. 2017; puspitasari, rusmil & gurnida 2013). according to the literature, the greater the motor impairment of these children, the more their autonomy in carrying out activities of daily living is limited, which largely explains poor qol for physical health (badia et al. 2014). this motor disability can lead to physical discomfort and difficulty in establishing relationships with other children (arnaud et al. 2008). in addition, motor disability exposes them to restriction of their participation as an active member of family, school and community (kerr, mcdowell & mcdonough 2007; mei et al. 2014). indeed, it was shown that their participation in physical and leisure activities is significantly reduced compared with children with normal development (carlon et al. 2012). this study highlights the benefit of a comprehensive assessment of children with cp, their family and environment in order to construct accurate estimates of their qol. these findings also help stratify factors that could have an impact on qol and subsequently helps in developing levels of intervention. in addition, the study in hand is based on the integration of the theoretical model of the icf that offers a more exhaustive understanding of the experience of the child with cp. this study’s sample is heterogeneous because the authors were interested in all the clinical forms of the disease providing a realistic vision of this condition. the results from the study in hand are consistent with the relevant literature, which contributes to a greater external validity. in addition, the use of the cp qol-child, a specific validated measurement instrument for the qol of children with cp, increases the credibility of the results. for medical practice, this study highlights the imperative of adopting a multidimensional approach, taking into account all bio-psycho-social aspects in the treatment of children with cp. however, this study has some limitations. the limited sample does not allow for generalisation to the entire population of children with cp because only children who benefited from adequate care in a specialised centre were included, which is not always the case in tunisian children with cp. this research is based on a transversal quantitative approach that can only paint a static picture of the experience of children with cp. therefore, a longitudinal layout that follows the dynamic and evolving nature of qol of these children and the various factors involved is better suited for this assessment. at the same time, the quantitative measurement of qol alone does not fully describe the complexity of the experience of children with cp. conclusion children with cp experience qol alteration affecting every domain. therefore, intervention with children with cp must be aware of their experience and rely on a thorough assessment of their qol that is adapted to their family setting and cultural context. the multiplicity of the factors associated with qol revealed by this study incites clinicians to adopt the icf approach by displaying its practical implications on the efficiency of the medical intervention. five out of the six predictive factors of qol are modifiable through a multidisciplinary approach within the framework of the international classification of functioning, disability and health classification of functioning (icf). namely, swallowing and language disorders can be treated with dedicated orthophonic sessions and specific interventions, the level of motor impairment and the intensity of chronic pain can be improved through a global approach including multiple medical and non-medical interventions. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions g.m., s.m., e.t., t.m., w.w., k.m. and s.j. contributed to the study’s conception, design, data collection, data analysis, result interpretation, manuscript writing, manuscript correction, proofreading, manuscript submission and funding aquisition. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability the data sets generated during and/or analysed during the current study are available from the corresponding author, m.g., on reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references angreany, d., saing, j.h., deliana, m. & dimyati, y., 2015, ‘comparison of the quality of life in cerebral palsy children with physical therapy more and less than 10 months’, paediatrica indonesiana 55(5), 287–292. arnaud, c., 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r. & reddihough, d., 2013, cerebral palsy quality of life questionnaire for children (cp qol-child) manual, university of melbourne, melbourne. waters, e., davis, e., mackinnon, a., boyd, r., graham, h.k., kai lo, s. et al., 2006, ‘psychometric properties of the quality of life questionnaire for children with cp’, developmental medicine & child neurology 49(1), 49–55. https://doi.org/10.1017/s0012162207000126.x waters, e., davis, e., ronen, g.m., rosenbaum, p., livingston, m. & saigal, s., 2009, ‘quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument’, developmental medicine & child neurology 51(8), 660–669. https://doi.org/10.1111/j.1469-8749.2009.03324.x distinguishing between epileptic and functional seizures seizure disorders are widespread more than epilepsy: the hidden cost of functional seizures methodological consideration and insights discussion conclusion acknowledgements references about the author(s) chrisma pretorius department of psychology, faculty of arts and social sciences, stellenbosch university, cape town, south africa citation pretorius, c., 2025, ‘beyond the seizures: addressing psychosocial disabilities in functional/dissociative seizures’, african journal of disability 14(0), a1682. https://doi.org/10.4102/ajod.v14i0.1682 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper beyond the seizures: addressing psychosocial disabilities in functional/dissociative seizures chrisma pretorius received: 14 feb. 2025; accepted: 14 aug. 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. disability studies, particularly in the realm of psychosocial disability, offer a critical lens through which we can understand the lived experiences of individuals navigating structural, social and psychological barriers. prof. leslie swartz has been an instrumental mentor in my academic journey to excel in the field of psychosocial disability research. his guidance has shaped my academic growth and professional development in many ways. while he was not directly involved in the functional/dissociative seizures (fds) (hingray et al. 2025) research presented in this article, his emphasis on cultural narratives, stigma, and inclusive approaches has significantly influenced its development. under his mentorship, i have gained a deep appreciation for the complexity of psychosocial disability, particularly in underrepresented contexts such as fds. his ability to approach research with both intellectual rigour and humanistic empathy has been a constant source of inspiration, encouraging me to view disability not just as a medical or social issue, but as a multifaceted experience deeply rooted in individual and cultural narratives. prof. swartz’s mentorship extended beyond theoretical insights; he consistently emphasised the importance of critical thinking and methodological precision. his feedback on my research proposals and manuscripts was always constructive, fostering both my confidence and my ability to conduct robust, impactful research. moreover, his encouragement to explore interdisciplinary approaches and his unwavering commitment to addressing stigma and inequality in disability contexts have influenced my research trajectory. he also exemplified the importance of mentorship itself, demonstrating how to nurture emerging researchers through patience, accessibility and a genuine investment in their success. inspired by his approach, i have taken on a mentorship role myself, striving to nurture and empower the next generation of researchers. through prof. swartz’s mentorship, i have not only refined my skills as a researcher, but have also developed a strong commitment to advancing psychosocial disability research that is inclusive, ethically grounded and culturally relevant. his mentorship has been pivotal in shaping my identity as a researcher committed to making a meaningful impact in this field. in this article, i reflect on my research on psychosocial disability in seizure disorders, with a particular focus on the intersection between prof. swartz’s work on epileptic seizures (es) and my own work on fds. distinguishing between epileptic and functional seizures seizure disorders are a collective way to refer to both es and fds, also known as psychogenic non-es and non-epileptic attack disorder. this term encompasses both types without specifying their origin. however, it is important to note that while the term ‘seizure disorders’ is common, there can be confusion because people often associate the word ‘seizure’ strictly with es. differentiating fds and es poses a considerable clinical challenge, as both conditions often present with similar behavioural and clinical characteristics, despite having distinct underlying mechanisms, management approaches, and treatment strategies (rawlings & reuber 2018). in this article, starting with a clarification of the es–fds distinction may be useful. epileptic seizures are caused by abnormal electrical activity in the brain, often diagnosed with electroencephalogram (eeg) and imaging, and they respond to anti-seizure medications (oguni 2004). functional/dissociative seizures, on the other hand, are a physical manifestation of complex neuropsychiatric factors, often linked to stress or trauma (popkirov et al. 2019). functional/dissociative seizures mimic es; but unlike the latter, they do not show abnormal brain activity on eeg (bodde et al. 2009, 2013). functional seizures are diagnosed through video-eeg (veeg) monitoring, and treatment focuses on addressing underlying neuropsychiatric factors, not with seizure medications (brown et al. 2011). seizure disorders are widespread epilepsy is considered the most prevalent neurological disorder, with more than 80% of people with epilepsy (pwe) living in lowand middle-income countries (owolabi et al. 2020). the overall prevalence of active epilepsy obtained in sub-saharan africa (ssa) (9 per 1000) is within the range of the mean value of 7.99 per 1000 population in high-income countries to 9.50 per 1000 population in low-income countries, while lifetime (16/1000) epilepsy highlights the remarkable burden of the disease in ssa (owolabi et al. 2020). regarding fds, the global prevalence rate of fds ranges from 2 to 33 per 100 000 individuals (benbadis & hauser 2000; villagrán et al. 2021). functional/dissociative seizures are more commonly observed in neurology clinics, with studies reporting fds in 5% – 10% of outpatients and 20% – 40% of inpatients in epilepsy clinics (asadi-pooya & sperling 2015). in south africa, epidemiological research on fds is scarce, with only one private hospital study in johannesburg finding fds in 50% of referred seizure patients (anderson et al. 2017). a recent study conducted at a hospital operating under a public–private collaboration in durban reported that 38.6% of patients with functional neurological disorders had fds, suggesting a higher prevalence of fds in south africa compared with global figures (naidoo & bhigjee 2021). the epidemiological data clearly highlight that seizure disorders represent a significant public health concern that warrants dedicated attention and resources. more than epilepsy: the hidden cost of functional seizures seizure disorders can lead to psychosocial disability because of the potential for significant social, emotional and cognitive challenges associated with these conditions (asadi-pooya et al. 2021; quintas et al. 2012). some of these challenges include stigma, anxiety, depression, cognitive impairments and difficulties with employment and relationships, which can significantly impact a person’s quality of life and ability to function in daily activities (asadi-pooya et al. 2021; quintas et al. 2012). in 2017, swartz and colleagues conducted a review aiming to examine the literature on published studies conducted in africa between 1994 and 2014 that examined psychosocial challenges of pwe and their carers (keikelame et al. 2017). several psychosocial challenges such as stigma, discrimination and marginalisation were highlighted. these challenges are compounded by cultural beliefs and a lack of understanding about epilepsy. many pwe face barriers to employment, education and social participation, while caregivers often experience significant emotional and financial burdens. women with epilepsy are particularly vulnerable to abuse and social exclusion. these challenges are exacerbated by limited access to epilepsy-specific healthcare, social support systems and accurate public education, underscoring the need for targeted interventions to improve the quality of life for pwe and their caregivers. in another study, keikelame and swartz (2018) explored the ways in which women with epilepsy (wwe) experience shame and resistance. shame was linked to emotions such as anger, guilt, regret and grief. these emotions underscore the internal struggles wwe face as they navigate the social stigma associated with their condition. on the other hand, resistance strategies emerged as a critical theme in the stories of wwe, who described their efforts to counteract discrimination, unfair treatment and abuse – sometimes through aggressive behaviours like bullying. the study highlights that while wwe can resist societal injustices, systemic barriers such as socio-economic inequalities, marginalisation and inadequate epilepsy support services often leave them vulnerable to silent suffering and poorer health outcomes (keikelame & swartz 2018). it is evident that psychosocial challenges associated with epilepsy are substantial; however, those related to fds are even greater. this is because of factors such as the pervasive lack of knowledge about the condition, frequent accusations of faking or malingering, stigma within healthcare systems, resistance to accepting the diagnosis, and limited empathy or understanding from healthcare providers (annandale, vilyte & pretorius 2022; rawlings et al. 2017, 2018). additionally, misconceptions about the origins of fds, societal prejudice, inadequate support systems, and the overlap with mental health conditions exacerbate the challenges faced by individuals with this disorder (rawlings et al. 2017; rawlings & reuber 2016). these complexities underscore the need for contextually grounded research. i begin by reflecting on prof. swartz’s influence on my methodological approach, followed by an overview of research conducted in south africa that highlights key psychosocial challenges faced by individuals with fds and proposes strategies to address them. methodological consideration and insights prof. swartz’s influence on my research methodology, while not a direct application of a formal method, is evident in the choices i made to address the unique challenges of fds in south africa. my work intentionally moves beyond a purely clinical perspective by focusing on the psychosocial dimensions of fds, which align with his emphasis on cultural narratives, stigma, and inclusive, ethically grounded research in the global south (keikelame & swartz 2019). rather than relying solely on quantitative data, most of my research consists of qualitative local studies to understand the lived experiences of individuals with fds, consistent with swartz’s call for humanistic, contextually rooted inquiry (keikelame & swartz 2019). furthermore, my decision to propose holistic, locally relevant interventions that integrate medical, psychological and social care mirrors his focus on developing research that is relevant and guides best practice in a south african context. this approach, guided by his mentorship, demonstrates a commitment to advancing research that is ethically grounded and culturally relevant. this influence also extends to how i mentor scholars, cultivating a new generation of researchers who are thoughtful, reflexive, critical and socially responsive. stigma, misunderstanding and social isolation stigma is a significant issue in fds and serves as an underlying factor across most themes. misunderstanding and stigma surrounding fds often result in strained relationships and reduced social support. social stigma from family and community members contributes to feelings of isolation and distress (pretorius & sparrow 2015). individuals with fds face stigma from healthcare providers who may perceive their condition as less legitimate than es, leading to delayed or inadequate care (samuels & pretorius 2023). people with fds may feel judged or dismissed by peers, family or even healthcare providers because of the nature of the condition (pretorius 2016). avoidance coping strategies are commonly used to navigate the stigma associated with fds (cronje & pretorius 2013). the fear of experiencing seizures in public often leads to social withdrawal, further exacerbating isolation (pretorius & sparrow 2015). healthcare system challenges the south african healthcare system lacks resources, including specialists trained to diagnose and treat fds effectively (pretorius 2016; vilyte, butler & pretorius 2023). functional/dissociative seizures are frequently misdiagnosed as epilepsy, leading to inappropriate treatment, including unnecessary use of anti-seizure medication and delayed access to psychological interventions. people with fds often experience fragmented care, with a lack of coordination between neurological and psychiatric services. while veeg remains the gold standard for diagnosing fds, it is costly and often inaccessible in south africa, and leads to a delay in diagnosis. to address this, a machine learning-based clinical decision aid, the functional seizure clinical decision aid – public healthcare (fsaid-ph), was recently developed and preliminarily validated in south africa to support early, cost-effective identification of fds in public healthcare (vilyte 2024). the delay in obtaining a correct diagnosis (average of 7.2 years) creates uncertainty, leading to emotional distress and mistrust in the medical system (pretorius 2016; pretorius & sparrow 2015). although appropriate communication of the diagnosis improves treatment adherence and reduces distress, healthcare professionals struggle with how to communicate the diagnosis. this leads to confusion, frustration and poor treatment adherence (fouché, hartwig & pretorius 2019; hartwig & pretorius 2019). ultimately, most of these challenges stem from a lack of knowledge and education among healthcare professionals, highlighting the urgent need for improved training and awareness (hartwig & pretorius 2019; pretorius 2016; pretorius & sparrow 2015; samuels & pretorius 2023). employment and socioeconomic stressors many people with fds face barriers in employment, either because of discrimination or because their condition prevents them from maintaining stable jobs (samuels & pretorius 2023). the unpredictable nature of fds can disrupt productivity and attendance, leading to difficulty maintaining employment or completing education. workplace discrimination and a lack of accommodations often add to the challenges. socioeconomic stressors such as financial insecurity and a lack of access to healthcare exacerbate mental health issues (pretorius 2016; vilyte et al. 2023). furthermore, people with fds from public hospitals, generally coming from lower socioeconomic backgrounds, experience significantly more violence, financial insecurity, and a lack of access to healthcare compared with those in private hospitals (vilyte et al. 2023). dependency and family dynamics families often struggle to understand fds, leading to overprotectiveness or frustration which can limit the patient’s autonomy (pretorius & sparrow 2015). functional/dissociative seizures may lead to increased dependency on caregivers, disrupting family dynamics and creating financial and emotional burdens (pretorius 2016). marital and familial relationships are often strained, with some patients reporting partner abandonment or domestic violence following their diagnosis (vilyte et al. 2023). emotional and psychological challenges a strong association exists between fds and psychological trauma, particularly childhood abuse, intimate partner violence, and loss of a loved one (vilyte et al. 2023). high rates of comorbid mental health conditions such as anxiety, depression, and post-traumatic stress disorder (ptsd), and other psychiatric comorbidities, which often go untreated, can exacerbate distress (vilyte & pretorius 2019). fear and uncertainty about seizure episodes can lead to avoidance behaviours and heightened emotional instability. people with fds tend to use avoidance coping strategies such as denial, escape, and distancing, which negatively affect their quality of life (cronje & pretorius 2013). discussion functional/dissociative seizures significantly impact daily living, often leading to functional disability that makes it difficult for individuals to work, drive or engage in social activities (pretorius & sparrow 2015). the south african context presents significant psychosocial challenges for fds patients, including stigma, trauma, economic hardship, and inadequate healthcare access, all of which contribute to psychosocial disability. addressing these challenges requires the integration of medical, psychological and social interventions to improve quality of life and reduce functional impairment (asadi-pooya et al. 2021). at the core of these challenges is stigma, which underlies all aspects of the fds experience – affecting diagnosis, treatment access, healthcare interactions, employment, and social relationships (annandale et al. 2022; hingray et al. 2018). healthcare professionals, families and communities often misunderstand fds, leading to marginalisation, disbelief and inadequate care. stigma reduction must be a central focus of interventions, requiring education, advocacy and systemic change to ensure that fds is recognised as a legitimate medical condition rather than a sign of malingering or attention-seeking behaviour (samuels & pretorius 2023). early and accurate diagnosis of fds is essential to improving patient outcomes and reducing psychosocial disability (doss & la france 2016). however, diagnostic delays remain a major challenge, often leaving patients misdiagnosed, untreated, or subjected to unnecessary medical interventions (doss & la france 2016). while veeg remains the diagnostic gold standard for fds, its high cost and limited availability in low-resource settings present major barriers to timely diagnosis (vilyte & pretorius 2019). the development of machine learning-based tools like fsaid-ph offers a promising, context-sensitive solution by enabling earlier, more accessible screening, but further validation is needed to confirm its broader clinical utility (vilyte 2024). beyond early diagnosis, one of the most critical steps in reducing psychosocial disability in fds is improving knowledge, education and awareness among healthcare professionals (hingray et al. 2018). many providers struggle to diagnose and manage fds because of limited training and understanding, often reinforcing stigma through dismissive attitudes or inappropriate medical treatments (hingray et al. 2018; samuels & pretorius 2023). education initiatives should focus on enhancing the recognition, diagnosis, and communication of fds, ensuring that healthcare providers convey the legitimacy of the condition, address patient concerns with empathy, and facilitate access to appropriate interventions (fouché et al. 2019). a multidisciplinary approach is essential, integrating neurology, psychiatry, psychology, and social work to address the complex needs of fds patients (fouché et al. 2019). this collaborative model allows for a holistic and coordinated care plan. in addition to improving healthcare systems, a key element of improving outcomes for individuals with fds is psychoeducation for both patients and their families. providing clear, culturally relevant education on the nature of fds can reduce fear, misinformation, and stigma while empowering patients to take an active role in managing their condition (pretorius & sparrow 2015). globally, psychological therapy is regarded as the preferred treatment for the disorder, even though professionals often face significant challenges in providing it (hingray et al. 2018). in addition, addressing comorbidities is crucial, as depression, anxiety, ptsd, and personality disorders frequently co-occur with fds and exacerbate functional impairment (vilyte & pretorius 2019). effective treatment of these comorbidities – through integrated psychiatric and psychological interventions – can significantly improve both seizure outcomes and overall well-being. while social isolation is often considered a significant issue for individuals with fds, a study aimed at exploring the socialisation characteristics of people with fds indicated substantial engagement in social activities (vaidya-mathur et al. 2016). this suggests that socialisation patterns may be more complex and nuanced than initially assumed. the most frequently cited barriers to socialisation were driving restrictions and medication side effects. when asked about preferred support options, respondents showed the highest interest in online support groups or educational programmes (29.46%), followed by office-based support groups (28.57%) and volunteering opportunities (23.21%). future therapeutic interventions should therefore consider offering both remote and in-person support options tailored to individual preferences and age-related needs (vaidya-mathur et al. 2016). in addition, a key treatment goal should focus on improving employment opportunities and providing job training for individuals with fds who can work (vaidya-mathur et al. 2016). to address work-related challenges, collaboration with employers to increase awareness and understanding of fds can help reduce workplace discrimination and create a more inclusive work environment. conclusion to effectively address the multifaceted psychosocial burden of fds, interventions must be comprehensive, integrating education, multidisciplinary care, therapy, and social support. however, these interventions must be grounded in research that is locally relevant and attuned to the unique sociocultural and systemic challenges of the south african context. while people with fds may share some difficulties with other disability groups, they face a distinct set of challenges: persistent stigma from healthcare providers and communities, frequent accusations of malingering or attention-seeking, prolonged delays in diagnosis, and difficulty accessing appropriate psychological care because of the fragmented nature of services. the invisibility and contested legitimacy of the condition often result in emotional distress, social isolation, and a loss of autonomy. these complexities demand solutions that are not only clinically appropriate, but also sensitive to the structural inequalities and cultural dynamics within which fds is experienced. addressing these challenges requires not only context-specific knowledge production, but also the cultivation of a new generation of scholars equipped to engage with these realities. drawing on the example of strong academic mentorship, such as that provided by prof. leslie swartz, this work underscores the critical role that mentorship plays in shaping methodologically rigorous, socially responsive, and ethically grounded research. strengthening both research and clinical practice in south africa depends on sustained mentorship, interdisciplinary collaboration, and a continued commitment to producing solutions that are generated within and for the local context. acknowledgements competing interests the author, c.p., serves as an editorial board member of this journal. c.p. has no other competing interests to declare. author’s contribution c.p. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the author declares that all data that support this research article and findings are available in the article and its references. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated 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psychiatric comorbidity in individuals with psychogenic non-epileptic seizures (pnes), epilepsy and other non-epileptic seizures (ones): differentiating between the conditions’, epilepsy & behavior 98(part a), 210–219. https://doi.org/10.1016/j.yebeh.2019.05.043 background south african context impact of covid-19 conversation the way forward acknowledgements references about the author(s) victor j. mckinney division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation mckinney, v.j., 2025, ‘exploring mental health support services for people with physical disabilities’, african journal of disability 14(0), a1687. https://doi.org/10.4102/ajod.v14i0.1687 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper exploring mental health support services for people with physical disabilities victor j. mckinney received: 16 feb. 2025; accepted: 30 june 2025; published: 30 nov. 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. background it has been documented that 16% of the world’s population has a disability, with a high concentration of this vulnerable minority living in the sub-saharan region (world health organization [who] 2021). it is also reported that gaining access to healthcare within lowand middle-income countries (lmics) remains a challenge (vergunst et al. 2015). persons with disabilities living in these contexts face a range of additional challenges, including inaccessible natural and built environments (mckinney & amosun 2020) and discriminatory attitudes towards their disability within their communities (hunt et al. 2018; vergunst et al. 2015). all these factors affect their ability to access adequate and equitable healthcare. in terms of mental health, it is estimated that one in eight people around the world are living with a mental health condition, predominantly anxiety or depression disorders (institute for health metrics and evaluation [ihme] 2020). of great concern is that south africa has a higher prevalence, with one in six adults presenting symptoms of anxiety, depression and/or substance abuse over 1 year (herman et al. 2009; shisana et al. 2024). although accurate data in south africa on adolescents living with mental health conditions are limited, it is estimated that, at any given time, a significant percentage of adolescents across the sub-saharan region are dealing with depression (27%), anxiety (30%) as well as behavioural and/or emotional problems (41%) (sorsdahl et al. 2023). the who declares that mental disorders are the major cause of years lived with disability (one in every 6 years), which carries significant economic consequences globally (who 2021). moreover, persons with disabilities are at twice the risk of developing health conditions, such as depression, in comparison to persons without disabilities (who 2021). south african context south africa became a democracy for the first time in 1994, having overcome the apartheid government, and that brought a strong focus on individual rights and being able to live free from discrimination in an inclusive society. this encompassed disability-related policy and legislation, including the ratification of the united nations convention on the rights of persons with disability (uncrpd) in 2007 and the launch of the white paper on the rights of persons with disabilities in 2015 (department of social development [dsd] 2015). however, over the last few decades, many challenges to effective service delivery have prevailed, including a lack of collaboration among government departments and the disability sector; insufficient gathering of disaggregated data on disability; slow service delivery; inadequate budgets; and, a lack of disability awareness and training among government staff and civil society, especially at grassroots level (mckinney, schneider & mckinney 2024b). furthermore, the legacy of apartheid continues to cause racial and economic divisions, and south africa remains one of the most unequal countries globally (hino et al. 2018; vergunst et al. 2015). on the whole, persons with disabilities experience exclusion from society and denial of opportunities across most spheres of life, including access to basic services (such as healthcare and education), employment opportunities in the labour market (both informal and formal) and moving independently within the built environment. from an advocacy and/or political perspective, most persons with disabilities are unable to contribute to decision-making processes that govern their own lives. together, these factors have a significantly detrimental effect on their citizenship and everyday quality of life (mckinney & swartz 2021; mckinney, swartz & mckinney 2020; ned et al. 2024; watermeyer & mckinney 2022). impact of covid-19 the extent of the underlying inequalities really came to the fore during the coronavirus disease 2019 (covid-19) pandemic. research on the lived experience of persons with disabilities, particularly those with physical and/or mobility impairments, highlighted how they were disproportionately affected by the stress and trauma related to the pandemic and struggled with prevailing and previously unconsidered challenges (lund et al. 2020; ned et al. 2024). a major issue was the experience of increased isolation, particularly through diminished access to transport and the built environment. at the outset of the pandemic, a national lockdown was declared to stop people from going outside and socialising. however, as restrictions eased, people with physical disabilities still found it difficult to venture outside. part of this was linked to the stigma surrounding their disability, with some community members believing that they were contagious. furthermore, many still felt vulnerable and not ready to go outside because of their more precarious health conditions, as well as the difficulty in using personal protective equipment (ppe) (ned et al. 2024). another key finding was their escalated reliance on family members for all daily activities. sometimes this reliance was a result of regular caregivers not being able to travel because of lockdown conditions. in other instances, day centres were forced to close, and so children with physical disabilities had to be looked after at home, causing immense strain on family resources and relationships. additionally, persons with physical disabilities were subject to discriminatory triage policies, and excluded from life-saving healthcare such as hospital admission, intensive care unit (icu) bed access and ventilator access, through to not being able to access the personal care they required because of social distancing (mckinney, mckinney & swartz 2021). this led to feelings of being ‘devalued’ by society and questioning one’s worth (watermeyer & mckinney 2022). besides being fearful of contracting covid-19, struggles with anxiety and depression increased for many persons with physical disabilities as they felt helpless, lonely and a burden to their families (ned et al. 2024). finally, persevering without receiving any mental healthcare services increased the precariousness of persons with physical disabilities. in other words, for those with pre-existing mental health disorders, poor management of their disorders generally risks negative treatment results for both their mental health and physical conditions (pettinicchio et al. 2021; theis et al. 2021). the department of health (doh 2023) identifies that the covid-19 pandemic, which it describes as a physical condition, generated mental and emotional anxiety among a large number of people. persons with physical disabilities were particularly affected for reasons relating to both their impairment and their physical environment. in a broader context, however, shisana et al. (2024) argue that the shared societal experience of the pandemic generated more awareness regarding mental health. they suggest this provides an opportunity for increased dialogue to address and transform previous stigma surrounding mental health issues. conversation the author of this community paper is a person with a physical impairment. he is a quadriplegic as a result of an accident three decades ago and has been using a motorised wheelchair since that time. having been involved with many projects for persons with physical disabilities at the grassroots level over the years, he felt a growing concern for the need for mental healthcare support, as highlighted during covid-19. he reached out to prof. swartz and prof. watermeyer to seek their input and experience on the situation. here, they collaboratively explored possible options for persons with physical disabilities, specifically counselling and psychotherapy sessions. unsurprisingly, from the outset, the range of options looked rather bleak. this was because of the challenges of inaccessible environments, the lack of personal assistance (including the availability of family members and caregivers), as well as the limited number of mental healthcare services available within south africa. however, the discussion continued, and a particular comment from prof. swartz generated two broad themes that inform the rest of this article. he said: ‘i guess the main thing is to see what is there … find out what can be used and made accessible to people with physical disabilities … and then explore what else is out there, what is new… and try and build upon that.’ (discussion with profs swartz and watermeyer, 19 march 2023) these themes are loosely described as ‘what’s available’ and ‘building on new and other programmes’. the following sections expand these themes, reflecting on the national mental health policy and strategic framework of south africa 2023–2030 (mhpfa) and current services available, including professional, non-professional, state, as well as non-governmental organisation (ngo)-driven, highlighting prevailing challenges for persons with physical disabilities. thereafter, possible strategies and recommendations are suggested. comments from the conversation with prof. swartz and prof. watermeyer are referred to throughout the rest of the article. what is available when discussing available services, prof. swartz and prof. watermeyer quickly identified that the shortage of professional services, and in particular, specialist therapists and programmes, was an ongoing problem for most of the population and hospitals out there. professional services the mhpfa (doh 2023) describes psychological rehabilitation as follows: mental health services that bring together approaches from the rehabilitation and the mental health fields, combining pharmacological treatment, skills training, and psychological and social support to clients and families in order to improve their lives and functional capacities. (p. 11) the new mhpfa sets out to strengthen the national health system towards achieving comprehensive service delivery regarding mental healthcare, promotion, prevention, care, treatment and rehabilitation (doh 2023). this strengthening is sorely needed. the who organisational global health observatory data repository documents that currently there are only 1.52 psychiatrists per 100 000 people in south africa (janse van rensburg et al. 2022). within public hospitals offering mental health services, 30% do not have a clinical psychologist, and only about 50% have a psychiatrist (nguse & wassenaar 2021). research has shown that formal community mental health services have a significant and positive impact at the community level (thornicroft et al. 2016). these services include group homes and halfway houses, as well as day-care services, such as support groups, home-based support care and protective workshops. these services are vital to ensuring that mental healthcare users who have been discharged from inpatient facilities can integrate back into the community effectively (shisana et al. 2024; sorsdahl et al. 2021). a specific advantage of community healthcare centres is that they provide a more holistic recovery approach. more specifically, they broaden the treatment model from focusing predominantly on clinical recovery (symptom remission through specialised psychiatric services) towards personal recovery. this incorporates aspects of improved functioning, community and/or social inclusion, family support, access to employment, alongside remission of symptoms as indications of recovery. a key drawback, though, is that national policy guidelines for the licensing of residential and/or day-care centres, while gazetted by the national department of health (ndoh) in 2018, have not yet been finalised. consequently, there are concerns that the standards required would have to be the same as hospital standards, and this would not be achievable within community-based healthcare facilities (robertson, moosa & jeenah 2021). this ties in with comments from prof. swartz regarding how some services are held up by bureaucratic and/or administrative processes. he and prof. watermeyer also suggested that these are issues where the disability sector could get involved and lobby for, specifically towards making future mental healthcare programmes inclusive and sustainable. according to sorsdahl et al. (2023), available data indicate that there are 355 community-based mental healthcare facilities across south africa. these are licensed in line with regulation 43 of the mental health care act, 2002. however, besides that, there is little data in terms of the ngos, the number of patients, the cost per patient and/or subsidies received by the departments of health (doh) and/or dsd. the limited number of community health programmes that are available must continue to be strengthened, as such programmes are integral to providing a link between (inpatient) hospital care and community-based (outpatient) rehabilitation, especially those that offer 1 month to 3 months’ residential psychosocial rehabilitation programmes. these programmes also involve life skills training and help users develop healthy lifestyle patterns and recreational goals (sorsdahl et al. 2023). however, having so few formal community healthcare centres has resulted in a stronger focus on using medication to treat healthcare issues; that is, the focus is much more on clinical recovery as opposed to personal recovery. in turn, this lack of support at the community level has created a situation where a quarter of inpatients who are discharged from the hospital are returning and being readmitted into the wards for treatment within 3 months. moreover, these readmissions come at a cost of 18.2% of the public health system budget, which is allocated for healthcare (sorsdahl et al. 2023). additionally, findings from the last stress and health survey, conducted from 2002 to 2004, suggested that treatment was received by less than 30% of persons with moderately severe disorders and less than 25% of those with mild disorders (shisana et al. 2024). besada, docrat and lund (2021) indicate a decline since then, estimating that the treatment gap has widened to over 90% for those with epilepsy, intellectual disability and mental disorders. while the above has described the shortage of community health facilities, it still has not yet accounted for prevailing obstacles in the natural and built environments including inaccessible public transport systems, which presents a further challenge for persons with physical disabilities in accessing adequate mental healthcare services. the notion of linking to other specialised services arose while the author was talking about finding counselling for a fellow quadriplegic who became paralysed at a young age and grew up in poor socio-economic circumstances. he had lost two older brothers to gang-related violence and had experienced a substantial amount of trauma in his life. prof. watermeyer pointed out: ‘i can think of one facility, the trauma centre for survivors of violence and torture in woodstock (area of cape town) – you need to apply and write a letter of motivation – then of course see how accessible it is – but it is an option, they could really help.’ (discussion with profs swartz and watermeyer, 19 march 2023) this generated further discussion in two areas, firstly, how many persons with disabilities experience(d) some kind of trauma related to their disability, which has impacted them long-term psychologically (kagan, itzick & tal-katz 2018). secondly, exploring access to mental healthcare support through other channels which may not be thought of straightaway. besides government services, numerous established ngo-driven programmes address mental healthcare. the organisations are reliant on external funding and operate from a national level down to more regional and local initiatives; they include the south african depression and anxiety group (sadag), hotline, lifeline, south african federation for mental health (safmh), family and marriage society of south africa (famsa), cape mental health, heal south africa, the foundation for professional development, cipla mental health helpline and others. their services are generally low-cost or free of charge and include specialised therapy, direct one-on-one telephone counselling (including suicide and crisis lines), educational resources and training, conducting online support groups, advocating for increased mental healthcare services and rights, among others. despite the number of organisations, they cannot keep up with demand and funding for services and trained professionals remains a constant concern. building on new and other programmes extending from prof. watermeyer’s comment about tapping into other specialised services – in this section on exploring other mental healthcare and/or support programmes for persons with disabilities – we focus on peer group training, which is quite well-known in the disability sector, as well as on a community-driven approach. non-professional therapy peer group training peer group training (pgt), as a form of non-professional therapy, has been shown to provide many positive impacts on the daily life of persons with physical impairments, including their independence within society (kumurenzi et al. 2023). the idea behind pgt is that a person receives advice and support from a group of their peers who have the same disability as them, for example, wheelchair users. participating in pgt often takes place in day workshops or camps, and is led by a group of mentors (with the same disability) who have gained experience in living with a particular condition (srubarz-stach, rutkowska & dabrowska-galas 2024). sessions may cover various aspects of everyday life facing persons with disabilities, including practical sessions, such as how to manage everyday activities in a wheelchair. these activities typically involve how to transfer from a wheelchair onto a bed or into a car; how to get back into one’s wheelchair if one falls out of it, et cetera. other sessions may involve discussion around life skills or more intimate subjects. sessions occur in groups or in a one-on-one buddy type scenario where topics may cover how to apply for and behave appropriately in a job interview, to more sensitive subjects, such as bladder and/or bowel management, sexuality or parenthood. taking part in pgt has proven to be beneficial for many on a range of levels (best et al. 2016; kissow 2015). to begin with, individuals get to be around others dealing with the same everyday disability-related challenges. they get to share their challenges, fears and ideas and learn from others who have been through similar experiences. sharing their stories with people in the same situation also helps to validate emotions that many may be dealing with about their disability. often these emotions are not easy to talk about to persons without disabilities, even though they may be very close (such as family members) and well-meaning; however, they simply cannot relate as they are not going through the same daily embodied experience (watermeyer & mckinney 2022). outcomes of pgt are generally positive and generate increased self-esteem and confidence (steinberg et al. 2023; srubarz-stach et al. 2024). encouraging themes for adults with physical disabilities have emerged from the literature, such as ‘getting my life back’ and ‘i can do it too’. they also expressed experiencing better quality of life through a heightened sense of autonomy and social inclusion, often extending to sport and recreational activities (ouellet et al. 2022; pellichero et al. 2020). such outcomes align with the goals of the uncrpd in terms of increasing independence and participation of persons with disabilities in society (mckinney et al. 2024a), along with the aims of the mhpfa in terms of improved well-being and mental health (doh 2023). a number of organisations for persons with disabilities (opds) and their members are involved in peer group support initiatives. these include the quad/para association of south africa (qasa), the national council of and for persons with disabilities (ncpd), the rachel swart fund (rsf) and the rehab skills lab, to name a few. some of these opds also provide ongoing support to their members in a range of areas. for example, qasa services include assistance in daily living, that is, accessing disabled parking discs, assistive devices, driving lessons and provision of healthcare products when returning home from a hospital or rehabilitation facility. most research has focused on the benefits to adults with physical disabilities, especially wheelchair users. however, emerging research suggests that pgt at paediatric level has also been effective in lessening challenges to participation, as was found in research involving children and adolescents with cerebral palsy and spina bifida (ouellet et al. 2022). other organisations, like the shonaquip social enterprise (sse), are alert to the stresses that family members of persons with disabilities experience. through their champions of change trust, the sse offers education, networking and support to parents of children with disabilities to help them overcome the physical and emotional isolation that many of them endure (trafford et al. 2021). a key strength of the sse’s approach was creating a dedicated app for parents. using the app not only provides parents with a platform to share ideas, resources and support as and when they have access to data, but it also enables the network to reach right across south africa. additionally, the number of parents who have joined has increased rapidly and significantly, which has also given strength to their collective voice (trafford et al. 2021). overall, the support provided and shared has substantially enhanced the mental well-being of the parents (and/or caregivers), which in turn, has a positive impact on their children with disabilities and other family members (rakap & vural-batik 2024). in that sense, the emergence of virtual platforms, such as zoom and google meet, for example, was the one outcome of the pandemic that was welcomed by persons with physical disabilities. utilising these platforms meant they could overcome barriers to connecting with others without leaving their home. this gave rise to many online support groups that offered advice and a place to share and receive much-needed support. these online platforms also offer great potential for telerehabilitation services, including one-on-one consultation and group therapy sessions (ned et al. 2024). it is important to note, however, an underlying inequality regarding access to virtual platforms, as many persons with physical disabilities living in poor socio-economic circumstances do not have access to technological devices and/or data. finally, a recurring issue is that in-person pgt services are generally urban-centred, and while some programmes extend to rural areas, such as rsf promoting independence through teaching wheelchair repairs, among others, there remains (as reiterated by prof. swartz) a dearth of adequate mental healthcare services away from the cities (rall & swartz 2023; visagie & swartz 2018). informal community healthcare services sorsdahl et al. (2023) suggest that the establishment of informal community healthcare services would greatly improve access to healthcare and help reduce the treatment gap significantly (2023). this approach involves training nonspecialists to be able to confidently identify and refer people in the community who they think would benefit from mental healthcare services. these ‘nonspecialists’ would comprise service providers already established within the community and include teachers, police, community healthcare workers and community members who provide peer support services. this approach would incorporate working with religious and traditional healers, who are often the first contact for persons struggling with mental health issues. the literature reveals that in some areas, up to 30% of people have consulted a traditional healer before seeking advice from anywhere else (nortje et al. 2016; sorsdahl et al. 2023). this community-based healthcare approach ties in with the inter-agency standing committee (iasc) guidelines on mental health and psychosocial support, as well as the who optimal mixed mental health services model (whomhs). the main goal of the iasc guidelines is to assist humanitarian aid stakeholders in collaborating to design and establish social support systems to protect and sustain mental health and well-being in times of crisis (iasc 2008). the foundation of the whomhs is that most healthcare needs can be treated with appropriate self-care, community support structures and primary healthcare services. it also acknowledges the importance of specialist psychiatric care, but that this should only be allocated for complex and severe cases (who 2007). essentially, these pyramid-structured models both suggest shifting the focus away from specialist institutionalised care (which is most costly but less frequently needed) towards increasing and capacitating community-based mental healthcare services (which are less costly but most in demand). the underlying notion is that creating a bottom-up approach, that is, addressing mental health predominantly at grassroots, primary healthcare level, will create a healthier society overall and help mitigate the need for specialised psychiatric services at institutional facilities (shisana et al. 2024). the way forward going forward, both prof. swartz and prof. watermeyer emphasised that, besides collaborating with other initiatives, current systems must be improved. to develop a comprehensive and effective mental healthcare service for persons with physical disabilities, far greater state investment and spending are needed for developing accessible infrastructure and facilities, as well as training and upskilling of staff in disability-related awareness and care. this ties in with the mhpfa, which includes prioritising mental health as a critical component of general healthcare (with increased budget); shifting focus from hospital-based care towards primary healthcare; and implementing collaborative systems at the primary/community care level, including increased access to specialist care services (shisana et al. 2024). addressing the area of producing more mental healthcare professionals, shisana et al. (2024) report that despite a significant number of undergraduate students specialising in psychology, only 5% of these will progress to master’s level. this is because of a current limitation set by the health professions council of south africa (hpcsa) on how many master’s students are allowed to enrol in higher education institutions (heis). removing this limitation, coupled with increased funding for public sector posts for registered counsellors, would significantly increase the pool of psychotherapists. additionally, the inclusion of more bridging programmes at heis, as is offered by the university of kwazulu-natal (ukzn), will enable mid-level workers to become registered counsellors after a year or two of study. in conversation, prof. swartz made the important point that the training of future healthcare professionals (as well as the design of training programmes) should include persons with disabilities as educators and experts in their own lives (harvey & swartz 2024; swartz 2018). this also extends to their families and member organisations (opds) and falls in line with the motto of the disability movement, ‘nothing about us without us’ (stone 1997:2). a pivotal strategy of the mhpfa is the establishment of a district mental health (dmh) team throughout all 52 districts of south africa (in 2023, there were only 14 districts with dmh teams). this would enhance community-based skills development via clinical mentoring, improved quality and training, and also enable (although limited) access to additional specialist services (shisana et al. 2024). furthermore, prof. watermeyer’s point on linking with other services, and the positive benefits of pgt for persons with physical disabilities, strongly promotes collaboration between regional opds and mental healthcare ngos such as sadag, safmh, famsa, among others. they could also partner with dmh teams (and/or other local state services) to develop cross-cutting, tailor-made programmes that respond directly to the support needs of persons with disabilities. this would create inclusive community-based mental healthcare services that are culturally appropriate and accessible to all other minority groups (e.g. the elderly), particularly in rural areas. these programmes will also provide platforms for training of professionals and ‘nonspecialist’ workers in the community on basic counselling interventions, as well as screening, detection and referral of complicated cases that need specialist treatment. development of programmes should also involve the department of cooperative governance and traditional affairs (cogta) and the south african local government association (salga) to assist collaboration with traditional healers and also address negative community attitudes towards disability. as described earlier, telerehabilitation services offer major opportunities to enhance treatment and therapy for persons with physical disabilities (and other minorities who struggle with accessibility or mobility). collaborations, as well as lobbying from opds and ngos, could support the provision of data by the state (and other organisations) for those in poorer socio-economic circumstances. one option is to provide a subsidy for access to data for persons with disabilities, and/or their caregivers, to enable them to access mental healthcare support. another feasible possibility is linking to networks such as giga, which is a joint unicef and international telecommunication union (itu) education initiative aimed at creating virtual hubs across the globe so that every school can connect to the internet. this would provide a platform not only for distance learning but would potentially give persons with physical disabilities access to a range of mental healthcare support services worldwide. finally, in terms of prevention, access to programmes that offer personal care assistance to persons with physical disabilities, and/or relief care to their existing caregivers, would go a long way to reducing levels of anxiety and depression caused by feelings of dependency and being a burden to others, especially family members. acknowledgements prof. leslie swartz and prof. brian watermeyer have made significant contributions to the guidance and insight into the mental healthcare of persons with physical disabilities. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution v.j.m. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing does not apply to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. they do not necessarily reflect the official 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https://doi.org/10.1136/medhum-2020-011860 world health organization (who), 2007, the optimal mix of services for mental health, world health organization, geneva. world health organization (who), 2021, world report on hearing, world health organization, geneva. abstract introduction methodology results discussion conclusions acknowledgements references about the author(s) servas shiyo department of prosthetics and orthotics, kilimanjaro christian medical centre (kcmc), moshi, united republic of tanzania jozef nagels physical rehabilitation programme, international committee of the red cross (icrc), geneva, switzerland harold g. shangali faculty of rehabilitation medicine, kilimanjaro christian medical university college (kcmu-college), moshi, united republic of tanzania citation shiyo, s., nagels, j. & shangali, h.g., 2020, ‘recycling of plaster of paris’, african journal of disability 9(0), a503. https://doi.org/10.4102/ajod.v9i0.503 project research number: prn-kcumco-735 original research recycling of plaster of paris servas shiyo, jozef nagels, harold g. shangali received: 06 feb. 2018; accepted: 30 aug. 2019; published: 27 may 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: plaster of paris (pop) is being used in different ways in the field of medicine, dentistry and rehabilitation. one of its uses is in the manufacture of models of body segments in prosthetics and orthotics. it is used as a one-off procedure in which the used material is dismantled and discarded. the disposal of discarded materials does not allow easy decomposition which then pollutes the environment. it is not known whether this material could be reused if recycled. objectives: the main objective of the study was to recycle pop models and determine its reuse in producing models with identical qualities, and thus reduce environmental pollution. method: the procedure adopted was to break discarded models into small pieces, remove impurities and dirt; then the sample models were milled, washed, dried and pulverised. the pop models were heated to evaporate crystalline water in order to determine for how many times it could be recycled while retaining the desired strength, setting time and working characteristics. results: the recycled pop reached higher setting temperatures and was stronger in terms of compressive strain and strength than the virgin pop. the highest temperature recorded for recycled pop was 40°c, which was higher than that for virgin powder (32.5°c). testing compressive strength of all cylinders in all groups showed that the average compressive strength of the recycled powder mixed with water in a ratio of 1:1 was 2407 kn/m² and the ratio of 2:3 resulted in a compressive strength of 1028 kn/m², whereas the average compressive strength of virgin pop powder mixed with water in a ratio of 1:1 was 1807 kn/m² and the ratio of 2:3 resulted in a compressive strength of 798 kn/m². there were no differences in working properties between the recycled pop and the virgin pop. conclusion: it was therefore concluded that under controlled conditions, such as grinding size, heating temperature, time and avoidance of contamination, used pop could be continuously recycled, resulting in stronger and workable casts. keywords: recycling pop; calcination time and temperature; compressive test; setting time and reusability of pop; working properties of recycled pop. introduction plaster of paris (pop) came to be known as such because of the large gypsum deposits at montmartre in paris. it was also commonly called the gypsum plaster, produced by heating gypsum up to about 150°c in the presence of air. the heated gypsum, that is, calcinated and roasted, in which some water is lost as steam, contains only half the quantities of the water of hydration, which is called gypsum hemihydrate or beta hydrate. the composition of gypsum-hydrated calcium sulphate (caso4.2h2o) is calcium 23.28%, sulphur 18.62%, hydrogen 2.34% and oxygen 55.76%. calcium sulphate has been used wisely in several ways in the construction industry, agriculture, medicine, architecture and art. sharp and cork (2006) estimated that about 102 million tons of gypsum and anhydrite was produced in 2004. the production had grown to 250 million tons universally (yu & brouwers 2010). gypsum hydration currently, three polymorphs of gypsum are well recognised; they are formed because of different preparation methods, crystal morphology, impurities and/or supplements/derivatives. both α-hemihydrates and β–hemihydrates undergo hydration reactions in slightly differing mechanisms accompanied by exothermic changes. addition of water to gypsum results in the formation of pastes with interlocking structures, which are responsible for gypsum setting strength (singh & middendorf 2007). dehydration of gypsum vazquez-almazan et al. (2012) indicated that when heated, 21% of water in calcium sulphate dehydrate (gypsum) undergoes dissociation from the mineral before evaporation, forming harder calcium sulphate hemihydrate. this process is now understood to be through endothermic decomposition reactions: yu and brouwers (2010, 2012) reported that the amount of water needed for the hemihydrate is critical in the hydration reaction. the mechanisms of setting and hardening of gypsum plaster have been explained by the crystalline theory. fine dehydrate is usually used to accelerate hydration to the desired setting time by changing the nucleation rates of generated dehydrate. mechanically, the natural hardened gypsum has a high void level, consequently it is not a very compact solid. gypsum strength evolves during setting because of rapid formation of interlocked matrix of β-dehydrate needles (crystals), followed by internal stress relief and removal of excessive water (yu & brouwers 2010). however, there is no information regarding the recycling qualities of calcium sulphate used in waste generated from its use in prosthetics, orthotics, orthopaedics or dentistry. wastes are in the form of improper/untimely setting of gypsum polymer and also from the gypsum polymer removed, for example after the repair of broken bone. gypsum uses and applications abundant natural availability of gypsum and its easy response to water, heating and rehydration make it a popular choice in the construction industry. one of the advantages of gypsum is that it is not hazardous to humans and plants. owing to its affinity to water, as a soil additive, gypsum improves soil physics and chemistry. it is an excellent source of calcium and sulphur for crop nourishment, especially in crops such as alfalfa, wheat, peanuts and cotton. in medicine, it has been used widely as a support for fractures, that is, broken bones (figure 1). when such a cast is applied to support and maintain the corrected position of a fractured segment of a bone, it is referred to as an orthopaedic cast. however, this is slowly being replaced by fibre glass. in dentistry, pop is used for mounting casts or models of oral tissues (figure 2). this transfer of measurement and shape facilitates an optimum alignment of anatomical structure of the teeth and its configurations (lokuliyana, petera & gunawardane 1988). figure 1: manual casting of a leg with plaster of paris (pop) bandage. figure 2: positive cast made out of plaster of paris (pop). in prosthetics and orthotics, pop powder is used to produce positive casts/models for fabricating mobility-assistive devices. the process used is either through lamination or thermoplastic moulding. figure 3 shows a rectified pop positive cast ready for moulding a thoraco-lumbar-sacral orthosis (figure 4), which is used for treating idiopathic scoliosis. figure 3: plaster of paris (pop) positive casts modified to fabricate spinal orthosis. figure 4: spinal orthosis molded on a plaster of paris (pop) positive cast. owing to its rapid setting properties, gypsum plaster casts may not be usable if the fractured bone is not properly positioned prior to application of plaster. in many situations, such casts become waste, thus necessitating the repeated preparation of pop powder. furthermore, huge quantities of plaster have to be used for plastering, and after the bone is set and rejuvenated, this hardened plaster has to be thrown away, thus adding further to waste with consequent burdens on the disposal of such pop plaster casts. the environmental burdens are in the form of limited landfill disposal facilities, and regulated permissions. at the same time, gypsum contributes to the emission of sulphur dioxide in the environment (szpadt & augustyn 1991). upon completion of the moulding process, the pop positive cast is often thrown out. however, the positive cast does not dissolve easily and therefore pollutes the environment. it becomes even worse when it is not broken into small pieces, as there are no guidelines or policies for disposing of such materials in the country. cost of plaster of paris the production of pop in most developing countries is very minimal as there are either no companies or very few companies in operation. the production is not consistent as there is often a breakdown of machinery. the cost of pop and therefore the fabrication costs of mobility-assistive devices are high. contribution to the field this study contributes to achieving sustainable and environmental-friendly disposal in daily use and practice. it also initiates some challenges of developing waste gypsum recycling processes. this in turn decreases the pollution of the environment, reserves raw material (gypsum) and increases its availability for prosthetics and orthotics use. the aim of the study was to assess the feasibility of recycling of pop casts to be reused to produce positive cast models in order to reduce the waste, minimise pollution and increase the availability of pop for use in prosthetics and orthotics field. methodology study design this was an experimental laboratory-based study and a sequential convenient sampling method was used, whereby all pop positive casts which were produced by the students and academic staff at the tanzanian training centre for orthopaedic technologist (tatcot) during may 2016 were used. sample and participants the average amount of pop positive casts/models used by the students and academic staff during the 1 month was found to be about 245 kg (about five bags of pop weighing 50 kg each). the sample size was determined by using the following formula of which the level of precision was 0.05: therefore, the sample size used for the project was 152 kg, where n = sample size; n = population; 1 = desired confident level; e = desired level of precision. the study was carried out at the kibo gypsum manufacturing company limited, moshi, tanzania, as well as at tatcot at the kilimanjaro christian medical centre and arusha technical college, arusha, tanzania. data collection and analysis the procedure adopted was to break models into small pieces, removing impurities and dirt, and then the samples were milled, washed, dried and pulverised. it included thermoplastic/thermosetting moulds using recycled pop positive casts. the setting time, temperature changes during the setting time and compressive strength were determined. the data were collected by using weighing scale, oven, thermometers, stop watch, camera and strength testing jigs. the data were analysed by using strength compression jig and computer spreadsheet program (ms-excel). recycling process converting the moulds or casts into powder dried pop positive cast models collected as seen in figure 5 were produced by the students during their practical examinations. they were made out of similar negative models, which were used for all the students. these positive cast models were made from the same type of powder from the factory. figure 5: plaster of paris (pop) positive casts. calcination process two kilograms of gypsum powder was kept in an oven (figure 6) preset to 180°c for 2 h for calcination process and for determination of water of crystallisation. figure 6: heat oven for heating polypropylene plates used for molding different parts of assistive mobility devices. samples for compressive testing the samples reflected in figure 7a were made out of polyvinyl chloride (pvc) pipes, which are cylindrical and have identical measurements and configuration. a mixed proportion of either 1:1 or 2:3 of water and gypsum powder was poured into the cylinders. they were later left to dry under the same temperature to ensure consistency for compressive testing for all the repeated recycled samples. the samples were made in a ratio of 1:1 which represented the equal mass of water and pop for one batch, and 2:3 in the other batch, which means that water was two-thirds of the pop used. figure 7: (a) cylindrical plaster of paris (pop) models for compressive testing; (b) a germany universal testing machine (utm), or materials test frame, is used to test the tensile strength and compressive strength of materials. the compressive test was performed using the machine reflected in figure 7b. the compression was maintained at a uniform velocity of 1 mm/min for all the samples. there were five cycles of compressive tests carried out on 12 samples in each batch, 6 for 1:1 and 6 for 2:3 ratio. packing owing to the hygroscopic property of pop powder when exposed to atmosphere, it reabsorbs water for crystallisation, thus reducing its reactivity power and strength. the calcinated pop powder has to be stored in an air-tight pvc bag for further use. figure 8 shows the first recycled powder packed in a pvc bag and stored for further use. the recycled powder weighed 152 kg. figure 8: a bag of plaster of paris (pop) powder. ten kilograms of powder was set aside from each sample which was later used for comparison of its properties with the recycled and virgin pop powder samples. the remainder of pop powder was mixed with water to repeat the recycling process with recycled powder. the mixing of virgin pop with 1:1 and 2:3 ratio of water and pop powder respectively was repeated for six times. the second, third, fourth and fifth cycles with 1:1 and 2:3 ratio of water and pop powder respectively were also repeated for six times. preparation of plaster of paris to recycle the powder the same process was used in mixing the recycled powder with water to produce positive model casts for the second, third, fourth and fifth recycling rounds respectively. the casts were broken manually and later pressed through the hardened steel plates of a pressing machine. this resulted in the particles of the same size and volume. this was continued into a milling and calcination process. the milling wheel was controlled by cleaning after every three procedures to ensure that there was no dirt. weighing and standardising water and plaster of paris powder water and pop powder were weighed on a scale to determine the mass of water and pop powder. apart from using in-house drinking water and storing pop powder at room temperature, there was no other standardised procedure used. compressive strength of recycled plaster of paris powder a germany-manufactured universal testing machine ‘utm’ was used for testing bricks (figure 9). fitted with perforated pelite on upper and lower surfaces, utm was used to read and register data of strain and strength of different models tested. the two different mixing ratios of 1:1 and 2:3 of pop:water showed differences in the strain and strength of the models tested. figure 9: a germany universal testing machine (utm), or materials test frame, is used to test the tensile strength and compressive strength of materials. ethical considerations permission to carry out the study was obtained from kilimanjaro christian medical university college (kcmu-college) of tumaini university makumira, arusha, tanzania (certificate no. 735). results comparison of mass and temperature the mass of pop positive casts was reduced by 17%, which reflected the amount of water of crystallisation that the gypsum powder contained as retained moisture. the recycled pop mixed into two different ratios of 1:1 and 2:3 recorded a maximum temperature of 40°c and 36°c respectively, but the virgin pop mixed into two different ratios reached a maximum temperature of 33°c and 31°c respectively. the setting time of pop varies from 25 min to 60 min, depending on thickness. the graphs shown in figures 10–13 indicate the setting time versus the temperature for four samples of the six systematically selected samples of pop mixed with water in two defined ratios (1:1 and 2:3). figure 10: virgin temperature changes. figure 11: 1st recycled temperature change. figure 12: 3rd recycled temperature changes. figure 13: 5th recycled temperature changes. the temperature patterns of three recycled pop samples are compared with the virgin pop extracted from initial casts. the temperature was recorded after time intervals of 2 min while observing the material’s behaviour with respect to its mixing ratio variants. the following are the vivid results obtained from the four graph patterns: the graph pattern of the virgin pop is identical to all the different levels of recycling, that is, 1st–5th level of recycling. in all graph patterns, the setting time starts as from the very first minute after mixing and is identical in both ratios. the results indicate that the mixing ratios do not affect setting time but affect temperature released during the setting. after the initial 2 min mixing of pop, while the virgin pop reached an initial temperature of 23°c, those from the 1st, 3rd and 5th recycle reached the temperature of 25°c. there was a significant increase in temperature (8%) in the recycled pop sample (25°c) compared to the virgin pop sample (23°c), but the initial temperature was the same for all recycled pop samples. in this study, the temperature pattern for all the samples was identical, and this is described by the initial, the highest and the lowest peaks of graphs. the setting time for all the samples was also identical, that is, 16th minute from the time of mixing. the results shown in table 1 reflect that there were rapid inclining trends of temperature towards the highest climax in all the trials. the mixing ratio was also significant in that the trial with ratio 1:1 showed higher temperatures in the last three trials. it was also evident that recycled pop starts with high setting temperature and ends with a higher setting temperature as compared to the virgin pop. the initial setting point for the virgin pop was 23°c and the highest was 27°c, while the initial setting point for recycled pop was 25°c and the highest point was 28°c. table 1: increase in temperature with time and the peaks reached. plaster of paris has two common forms, that is, the alpha hemihydrates and the beta hemihydrate. the alpha hemihydrate has a density of about 2.76 g/cm3, while the beta hemihydrate has a density of about 2.63 g/cm3. the estimated amount of water after drying was 25 g and 47 g for 1:1 and 2:3 mixing ratio respectively. this resulted in a density of 0.847 g/cm3 (1:1 ratio) and 0.637 g/cm3 (2:3 ratio), the 2:3 ratio revealing a lower density. the pop mixed with water at 1:1 ratio retained higher mass weight relative to the pop mixed with water at 2:3 ratio. initially, all the sample models prepared from the same powder sample but mixed in two different ratios (1:1 and 2:3) had the same mass weight until setting process was complete, but they started losing excess water at different rates during dehydration of the model. the model from 1:1 ratio lost water slower than the model made from 2:3 ratio. the two different mixing ratios of 1:1 and 2:3 of pop and water showed a significant effect on compressive strength, with recycled pop being 2.34 times stronger. for both virgin and recycled material, the higher the pop powder to water mixing ratio, the higher is the strength, and vice versa. this is because the powder crystals provide more sites for compact bond attachments that resulted in stronger structures by reducing porosities in pop mould. while the average mass of the model made from recycled pop mixed at 1:1 ratio was 301.35 g, the virgin pop model had a mass of 287.92 g, showing a variation of 13.43 g (about 4.5%). the average mass of the model made from recycled pop mixed at 2:3 ratio was 226.0 g, while the virgin pop with a mass of 219.0 g shows a difference of 7.82 g (3.5%). in general, mass of the models made from pop mixed at 1:1 and 2:3 ratios were 299.11 g and 225.52 g respectively, which amounted to a difference of 73.5 g (approximately 24.25%). figure 14 indicates that, the model mixed at 1:1 ratio resulted in a volume change of 2.04%, while the model mixed at 2:3 ratio had a volume change of 2.42%. this indicated that there was 15.70% greater volume change with different ratio. figure 14: plaster of paris recycling trend. the recycled material showed the average highest compressive strength of 2407 kn/m² compared to the virgin material having an average compressive strength of 1807 kn/m². when the powder concentration is higher, the model was more compact and stronger with little deformation before attaining the ultimate point. the compressive strength was affected by the mixing ratio of pop powder and water such that the average strength of the recycled powder mixed in 1:1 ratio was 2407 kn/m² whereas with 2:3 ratio it had an average strength of 1028 kn/m², and the virgin pop gave results of 1807 kn/m² and 798 kn/m² respectively. therefore, the 1:1 mixing ratio yielded compressive strengths that were approximately 43% stronger than the 2:3 mixing ratio for both recycled and virgin powder (figure 15). figure 15: compressive strength. workability of recycled plaster of paris powder for practical testing of the workability characteristics of recycled pop, two negative casts of bilateral ankle foot orthoses and one that of trans-tibia negative were taken by standard methods for filling with recycled pop slurry. negative casts were removed after 1 h for rectifying and carrying out different procedures of thermoplastic and thermosetting of recycled pop with following observations. positive casts were of optimum standard which allowed for easy filing, nailing and cutting, and were able to accommodate the use of all the tools used for rectification, that is, modification of positive casts by using rasps (flat and half round). the impression of the force applied by virgin and recycled pop was similar. the nails applied during thermoplastic process were firmly held, indicating that the structure was hard enough. during moulding, recycled pop had an optimum strength to withstand the compressive force subjected to it during configuration and setting of plastic material either in the solid form or the liquid form, that is, when the pliers were used to mould a thermoplastic material, the plaster withstood tension without failure. discussion water of crystallisation the degree of gypsum dehydration was strongly influenced by the material’s structure, particle size and impurities as well as by the conditions under which the process took place, such as temperature, heating rates, vapour pressure, humidity and particle size (molony & ridge 1968). in the same study, the average loss of water was 170 g and the temperature used was 180°c. the slight difference in the loss of water in which structures in the materials were not necessarily the same, was also witnessed by molony and ridge (1968). compressive strength tests plaster of paris can be produced by the heat treatment of discarded moulds under different conditions, and the quality of the product thus obtained depends on temperature and duration of burning. a temperature of 180°c with a heating time of 2 h was found to be the most suitable combination for conversion of used moulds into pop powder, which showed a compressive strength of 375 n (lokuliyana, petera & gunawardane 1988). workability of recycled plaster of paris there was no difference in the working properties of recycled pop and virgin pop. mixing of recycled gypsum was much more economical because less powder was used to achieve and maintain the same strength as well as setting time of pop positive impression. the physical and chemical properties of the product thus obtained were the same as those of commercially manufactured pop powder; therefore, the product obtained under these conditions could be used for manufacturing new moulds and also possibly as a cementation material for construction purposes (lokuliyana, perara & gunawardane 1998). environment conservation recycling used/waste pop reduces environment pollution as large quantities are recorded from waste products, while reduction of environmental waste has been strongly suggested, especially in mining processes. friends of the earth (2008) agree that recycling reduces the need for raw materials such as metals, forests and oil, and consequently reduces our impact on the environment. cost of plaster of paris this study provided evidence-based facts to embark on recycling pop models and casts so as to avoid pollution and reduce the time spent and the costs of producing pop powder. conclusions plaster of paris can be produced by thermal treatment of recycled gypsum powder at a temperature of 180°c for 2 h. the results of this project show that pop could be recycled repeatedly with the same procedure without altering the required setting time and working characteristics of recycled pop powder for prosthetics and orthotics, and even improving the compressive strength of casts. thus, recycling pop could preserve the environment and reduce pollution. it seems that recycling pop could reduce the cost of importing new pop. however, further study is needed to compare the costs of importing versus recycling pop. acknowledgements the authors wish to acknowledge the support from special fund for disability (sfd) now referred to as icrc moveability foundation; kcmu-college; tatcot; regional office of the tanzania road authority, kilimanjaro; arusha technical college and vocational training centre in arusha region for their expert support during the entire process of the project. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions s.s. was the project leader, responsible for data collection and analysis. s.h.g. was responsible for project proposal writing, raising of funds, data analysis, writing of the article and submitting for possible publication. n.j. reviewed the article and contributed to the writing and fundraising. funding information this research was funded by icrc moveability foundation regional office based in dar es salaam, tanzania. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinion expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references friends of the earth, 2008, recycling: ‘why it is important and how to do it’, weblog, viewed 12 may 2018, from https://friendsoftheearth.uk/sites/default/files/downloads/recycling.pdf. lokuliyana, k., perera, j. & gunawardane, p., 1988, ‘studies on the production of plaster of paris from discarded moulds’, journal of the national science foundation of sri lanka 16(1), 53–65. https://doi.org/10.4038/jnsfsr.v16i1.8277 molony, b. & ridge, m.j., 1968, ‘kinetics of the dehydration of calcium sulphate dehydrate in vacuo’, australian journal of chemistry 21(4), 1063–1065. https://doi.org/10.1071/ch9681063 sharpe, r. & cork, g., 2006, ‘gypsum and anhydrite’, in j.e. kogel, n.c. trivedi, j.m. barker, & s.t. krukowski (eds.), industrial minerals & rocks, 7th edition, pp. 519–540, society for mining, metallurgy, and exploration, inc., littleton, colo. singh, n.b. & middendorf, b., 2007, ‘calcium sulphate hemihydrate hydration leading to gypsum crystallization’, journal of progress in crystal growth and characterization of materials 53(1), 57–77. https://doi.org/10.1016/j.pcrysgrow.2007.01.002 szpadt, r. & augustyn, z., 1991, ‘environmental pollution in the vicinity of a waste-gypsum landfill’, chemistry for the protection of the environment 42, 387–399. https://doi.org/10.1007/978-1-4615-3282-8_33 vazquez-almazan, m.c., ventura, e., rico, e. & rodriguez-garcia, m.e., 2012, ‘use of calcium sulphate dihydrate as an alternative to the conventional use of aluminum sulphate in the primary treatment of waste water’, walter sa 38(5), 813–817. https://doi.org/10.4314/wsa.v38i5.22 yu, q.l. & brouwers, h.j.h., 2010, ‘gypsum: an investigation of microstructure and mechanical properties’, proceedings 8th fib international phd symposium in civil engineering in kgs, lygby, denmark, june 2010, pp. 20–23. yu, q.l. & brouwers, h.j.h., 2012, ‘thermal properties and microstructure of gypsum board and its dehydration products: a theoretical and experimental investigation’, fire and materials 36(7), 575–589. https://doi.org/10.1002/fam.1117 abstract introduction and background methodology data analysis presentation of findings discussion limitations and further recommendations for this study conclusion and recommendations acknowledgements references about the author(s) vuyelwa v. duma happy home children centre, umtata, south africa ntombekhaya tshabalala centre for disability and rehabilitation studies, department of global health, faculty of health sciences, stellenbosch university, cape town, south africa imijeloyophuhliso foundation, east london, south africa gubela mji centre for disability and rehabilitation studies, department of global health, faculty of health sciences, stellenbosch university, cape town, south africa citation duma, v.v., tshabalala, n. & mji, g., 2021, ‘the black hole of dealing with a disability diagnosis: views of south african rural parents’, african journal of disability 10(0), a951. https://doi.org/10.4102/ajod.v10i0.951 original research the black hole of dealing with a disability diagnosis: views of south african rural parents vuyelwa v. duma, ntombekhaya tshabalala, gubela mji received: 20 sept. 2021; accepted: 05 oct. 2021; published: 29 nov. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: lack of support systems in the management of health and rehabilitation related problems, including the stigma of giving birth to a child with disability, results in some parents ignoring the doctor’s prognosis of lifelong disability. objectives: the study was conducted in the eastern cape province (ecp) of south africa (sa) on parents’ views in caring for children with disability in an area with minimal health facilities in a rural setting. method: data was collected using exploratory descriptive qualitative methods. a xhosa-speaking researcher facilitated six focus group discussions and conducted one individual in-depth interview with 37 parents or caregivers of children with disability residing at happy home. only one father was interviewed. thematic analysis was used in interpreting data obtained from interviews. results: the findings revealed themes indicating key concerns of parents, which were as follows: challenges with disability diagnosis, negative attitudes of health professionals, health and rehabilitation related problems, and lack of support from families and community. conclusion: caring for children with disability in a rural setting where services are minimal or not available to the poorest people who mostly need such services is not easy. thus, to respond appropriately to the health and support needs of children with disability, it is crucial to understand the social context and needs of their families and caregivers. due to size of the study, findings cannot be generalised. recommendations are made for further studies to explore the vital issues affecting parents of children with disabilities. keywords: children with disability; parents; rural; support; south africa. introduction and background the diagnosis of disability in a child presents challenges for many parents and families (huang, kellett & st john 2010; tigere & makhubele 2019; yaacob et al. 2021). for most parents on learning about their children’s disability, shock becomes the first response to dealing with the diagnosis (hemming & akhurst 2009; yaacob et al. 2021), followed by refusal to accept the diagnosis, anger and fear of the unknown world that still needs to be travelled (huang et al. 2010). davis suggests that those who care for people with disabilities are expected to mourn and go through some form of grief on hearing the disability diagnosis. this is because disability is viewed by the rest of the society as a tragedy (davis 1987). kubler-ross and kessler (2004) note five stages of grief that can be transferable depending on the circumstances that one is going through. these are denial, anger, bargaining, depression, and acceptance. hemming and akhurst (2009) assert that the way professionals disclose a child’s condition and the period taken to support the parents in dealing with the challenges that come with having a child with a disability, often puts parents in a dilemma. they further refer to this time as a ‘black hole’ as parents of children with disability grapple with the diagnosis and sometimes find themselves denying what they see (hemming & akhurst 2009). for these parents, denial and fear of being stigmatised is about protecting their children from social marginalisation and from being considered less valuable than children born without disabilities (tigerera & makhubele 2019; tshabalala 2014; yaacob et al. 2021). this state of denial can result in helplessness and hinders parents in planning how they will cope with the child with disability (hemming & akhurst 2009). gona et al. (2018) assert that health professionals underestimate the emotional distress and need for information experienced by parents and carers of children with disability. this emotional distress is further amplified by social factors such as fear for the future, stress, rumour-mongering and poverty (gona et al. 2011). this is often the case for poor families living in areas that hold strongly to traditional customs and religion (tigerera & makhubele 2019; tshabalala 2014). different cultural perceptions and societal understanding of health and disability might mean that the access and provision of health and social services for children with disability by their parents and family members might vary (legg & penn 2013; maart & jelsma 2014). depending on one’s belief system, some of the responses from a parent of a child with disability might include some visitations to one or all of the following: biomedical and/or allopathic health practitioners; indigenous healers; and listening to and gaining advice on belief-systems, some of which might be traditional, such as witchcraft and religious belief systems, to search for a cure. these parents are looking for something that might help and improve their situation. (aldersey 2012; tigerera & makhubele 2019; tshabalala 2014). dura-vila (2010) suggests that raising a child with disability has significant consequences for parents and family. one possible consequence that a parent may face is the frustration of being deserted by their partner once there is a clear diagnosis that the child is permanently impaired; most of the time it is the mother who is left with a child with disability (dura-vila 2010; ingstad 1997). in the absence of fathers, deserted mothers must fend for themselves, and this can result in both emotional and physical strain (zuurmond et al. 2018). ingstad (1997), in the study conducted in botswana, stated that in a poor resource setting, women who were parents or caregivers of children with disabilities were more often unemployed and were single parents who depended on their extended families for coping with a child with disability. the extended families, who are usually expected to offer support during times of crisis, often distance themselves from both the mother and the child with disability. in most cases, the mother and the child become the black sheep in their families (tshabalala 2014; yaacob et al. 2021). in some instances, where the mother remains integrated with the family, some family members even go to the extent of displaying negative behaviour by calling the child names that are derogatory and destructive to the child (tshabalala 2014). speculation about the child’s disability amongst community members could possibly result from the lack of proper information on what causes a disability (gona et al. 2011; taderera & hall 2017). as previous studies in kilifi and limpompo have found that disability is associated with evil spirits, punishment from god or witchcraft, this could possibly explain the aspect of people spreading rumours (gona et al. 2011; tigere & makhubele 2019). most importantly, the issue of access to healthcare services is a major challenge. (vergunst et al. 2017; yaacob et al. 2021). vergunst et al. (2015) in his article entitled you carry your own wheelchair, highlighted the plight faced by wheelchair users in taxis in the rural areas of south africa (sa). in rural areas, poor infrastructure makes roads inaccessible and unsuitable for use of assistive devices like wheelchairs (vergunst et al. 2015). the scarce public transport service results in persons with disability who use wheelchairs avoiding visits to healthcare services, which are usually far from people’s homes. it is also acknowledged that distances, transport, and the availability of services generally are more problematic in many rural areas (eide et al. 2015). this becomes a problem as the child grows and becomes heavy to carry (grut et al. 2009). taxis and their drivers are reluctant to provide transport services for persons with disabilities, especially those who use wheelchairs (grut et al. 2009). even when the person ultimately reaches the clinic or hospital, there is no guarantee that they will receive the service they require because of poor service delivery (mji et al. 2017). ensor and cooper (2004) emphasise the need for researchers and policymakers to give attention in their work on ways to minimise barriers to healthcare services, especially for the poor and other vulnerable groups. the costs of access to healthcare services, lack of information and cultural barriers may impede these groups from benefiting from public healthcare services (taderera & hall 2017). for mothers of disabled children, who are already facing challenges of poverty and inadequate access to healthcare and rehabilitation services, this implies that it becomes an unsurmountable task to make further efforts to try and access healthcare and rehabilitation services (vergunst et al. 2017). as parents often do, despite diagnosis, they still expect their children to achieve things that in the face of society would make them proud (van rooyen 2002). however, because of the extent of disability, some children’s milestones become delayed and for some, impossible to achieve on their own, thus leading to parents feeling let down by their children (van rooyen 2002). in rural communities such as kenya and malawi, parents hid their children in fear of being ridiculed. some ill-treated them because of the overwhelming cultural pressures they encountered whilst facing the unchanging conditions of their children (gona et al. 2011; paget et al. 2016; taderera & hall 2017). to make sense of their situations, parents, based on their faith or religion, use coping skills, and attempt to accept their children by believing that they are gifts from god (bunning et al. 2017; masulani-mwale et al. 2016). in situations where parents are trying to cope with a child with disability, siblings are expected to provide care and the love that parents see their children denied by families and society at large. this can put more pressure on siblings (hemming & akhurst 2009). several studies on caregiver problems in rural context confirm that, in dealing with disability diagnosis and coping with challenges, some parents resort to neglecting their children (bunning et al. 2017; gona et al. 2011, 2018; paget et al. 2016; masulani-mwale et al. 2016). transport costs, negative attitudes among health professional, lack of accommodation at, including accessibility to health facilities are reported as serious problems and barriers for people with disabilities in rural areas (eider et al. 2015). an approach that has brought positive outcomes, as reported by gona et al. (2018), is counteracting the cultural and socio-economic challenges faced by parents or caregivers of children with disabilities by empowering rural communities with information about disability. in these spaces of empowering the community, people with disabilities can, with their experience offer unique and authentic experiences as ‘firsthand experts’ and can act as facilitators in such discussions. despite challenges that parents and families of children with disabilities often experience, many parents of such children adapt and develop resilience in the face of challenges; particularly where parents work together and support each other in developing their own ways of addressing the challenges they often face (gerstein et al. 2009; gona et al. 2011; tshabalala 2014). thus, if we are to respond appropriately to the health and support needs of children with disabilities, it is crucial to understand the social context and interpretation of their needs by their families and caregivers (tshabalala 2014). this understanding of the context assists in knowing and understanding the culture, available resources – both social, health and rehabilitation – and the infrastructure of that context. this is supported by mbwilo, smide and aarts (2010) in a study conducted in tanzania, suggesting that families be empowered with skills that will facilitate and enable parents to understand the needs of their children and allow communication between the parents and a child with a disability. we conclude this introduction by drawing on gona et al. (2011) and bunning et al. (2017) where both articles advise that when developing programmes related to children with disability, it is important to draw from challenges faced by the parents and carers, including the values they create and priorities in adaptation to the challenges they face in caring for a child with disability. this study, therefore, aims to present parents’ views about caring for children with disability in an area with minimal health facilities in a rural setting in the eastern cape province (ecp) of sa. methodology the study setting the study was conducted at happy home, a community, rural rehabilitation-centre (this is called happy home throughout the study) outside mthatha in the ecp of sa. situated within the or tambo district municipality, mthatha is the main town of the king sabata dalindyebo (ksd) local municipality. the municipal total area is about 1700/km2 and has an estimated population of 96 114 (stats sa 2011). mthatha is the third largest town in the ecp of sa serving as an economic and social hub servicing up to eight functionally lower-ranked towns in the region and the surrounding rural settlements (ortdm idp 2013). it covers about 80% of what used to be marginalised homeland in the transkei. about two-thirds of its citizens live in poverty, with 52% being formally unemployed (harrison 2008). the number of people living in poverty is also high (64.6%), having an unemployment rate of 65.5% and literacy rate of 42.2%. the town is generally made up of professionals, non-professionals, semi-skilled workers, unskilled workers, business people and unemployed people (chireshe et al. 2010). the main economic sectors include community services (55%), trade (18.5%), finance (16.9%), agriculture (3.5%), transport (3.1%), manufacturing (2.8%), and construction (2.7%) (chireshe et al. 2010). transport services are largely provided by the private sector with most households in ksd fully reliant on public transport. study design this is an exploratory descriptive study that utilised qualitative methods of data collection. a xhosa-speaking researcher facilitated six focus group discussions (fgd) and conducted one individual in-depth interview with 37 parents or caregivers of children with disability residing at happy home. only one father was interviewed. sampling a comprehensive method of sampling was used whereby all the parents of children with disability who attended happy home were chosen to participate in the study. the focus was to explore parents’ views on the challenges of caring for a child with disability in a rural setting. the inclusion criterion was having a child with a disability that attended happy home. thirty-seven parents or caregivers participated in six focus-group discussions that comprised six parents or caregivers per group. only one father was included. because of the high unemployment rate, lack of resources and poor living conditions in the villages where participants reside, participants had their children with disabilities residing at happy home during most of the year for proper care. arrangements were made so that the xhosa-speaking participants could travel from the surrounding villages for the fgd that were conducted at happy home. feedback sessions on information collected and analysed were scheduled prior to the parents coming to collect their children for the june or july holidays. these sessions were then conducted at the same venue and the aim of the feedback workshops was to obtain confirmation from the parents about the accuracy of data which were collected earlier. data collection when parents visited happy home for a parent meeting, they were then informed of the proposed study and invited to participate. all voluntarily agreed to participate and they, together with the researcher, worked on a schedule for interviews and meetings. before data collection, the participants consented by signing the written consent form after the researcher had read the consent to the participants, those who could not write initialled with an x on the consent form. they were also asked to consent for fgds and for the interview to be recorded, whilst their anonymity was also guaranteed. the guide was used to facilitate discussions. the development of the guide was influenced by the need to respond to the aims and objectives of this study, (see last sentence in introduction). the guide facilitated a discussion from parents and covered the following questions: when did they know that their child had disability; who informed them that the child has a disability; what was their reaction; what was the response of the immediate family; and, what is the main challenge that they are experiencing. happy home has a small hall for functions and meetings for parents or caregivers of children with disability. this is a private space that was used for conducting the fgds. in this study, fgds were conducted as a technique to facilitate information-sharing amongst parents. qualitative methods, such as fgds and in-depth interviews, provide a ‘deeper’ understanding of social phenomena that could not be obtained through mainly quantitative methods, such as questionnaires (morgan & ziglio 2007; silverman 2013). because of the fact that the male participant was the only participant amongst female participants, an in-depth interview was conducted to ensure that he could have a private space where he was able to openly express himself. culturally male people hardly speak in spaces that are dominated by females, and that was the case with the fgds. it was also important to hear his views about his experience of caring for a child with disability in an area with minimal health facilities in a rural setting. there were six fgds that consisted mainly of mothers with children with disability and one father. the fgds started and ended with a prayer as was the tradition of holding meetings in this area. each fgd lasted approximately 2 h as the parents had a lot to share. the parents were able to share stories about their experiences of having to raise children with disability in rural settings and, at the same time, express their views and opinions on how they interpreted their situation. where parents were diverting from the research questions, prompts were used to draw them back to the main aim of the study. suitable prompts that were aligned with the questions in the guide were used to ensure that the participants remained focused on the aims and objectives of the study. the researcher opted to do the in-depth interview with the male participant as she wanted to be careful about generalising male opinions regarding raising a child with disability. ethical considerations ethical clearance for the study was obtained from the ethics research committee at stellenbosch university, reference number: no9/06/167. all participants completed informed consent forms, and the completed documents were received from them. the consent form explained what the study was about, including the aspects of confidentiality and anonymity. the participants were told that they were free to leave at any point without any repercussions. furthermore, the participants were asked for their consent to audio-record the interviews. reflexivity the researcher herself is a parent of a child with disability. to avoid further biases in the study the research assistant was appointed to do transcription and translation to both languages – xhosa and english. the research assistant was trained on key methodological aspects of the study. a priest was also appointed as research assistant to address the ethical issues of confidentiality. data analysis data from the fgd was transcribed and translated into english as the fgd were conducted in isixhosa as mentioned earlier. the transcription was checked by the researcher to ensure that the information on the transcripts was the same as that on the audio-cd. each transcript from each fgd was given a number (1–6) according to the sequence of occurrence of each discussion. the transcript of the male participant was done separately and given the number 7. the data were analysed manually by the researcher. thematic data analysis became the most appropriate analysis for this study because of what braun and clarke (2006) describe as the advantage of its flexibility and its usefulness to provide rich, detailed yet complex accounts of data. the following six guiding steps for thematic data analysis were followed by the researcher: familiarising yourself with your data, generating initial coding, searching for themes, reviewing themes, defining and naming themes. the themes were further analysed to see how some may fit together to make up a specific theme and subthemes (braun & clarke 2006). on reviewing all themes and subthemes at this stage, it was important to make sure that all selected extracts were answering the research question. the four themes which are presented in the discussion below are as follows: challenges with disability diagnosis, negative attitudes of the health professionals, healthand rehabilitation-related challenges, and lack of support from family and community. these themes and subthemes were used to present the findings. presentation of findings the themes and subthemes that emerged during the six fgds and the single in-depth interview, were presented with direct quotations from the parents or caregivers’ expressions of their own experiences. these are presented in four main headings below. each quotation that came from parents (p) and caregiver (c) was identified by the number assigned to that focus group discussion (fgd). challenges with disability diagnosis; negative attitudes of the health professionals; healthand rehabilitation-related challenges; lack of support from family and community. in table 1, themes, subthemes and verbatim quotes that emerged from the participants are listed. table 1: presentation of four main themes with subthemes. theme 1: challenges with disability diagnosis the reactions of parents to disability diagnosis of a child varied in general. the responses of mothers and fathers to the birth of a child with disabilities were often negative and ultimately led to abandonment of the child by one or both parents. below are subthemes presenting some of the challenges experienced by parents once they hear the disability diagnosis of the child. sub-theme1: false blame the responses of mothers and fathers to the birth of a child with disability were often negative and resulted in one or both parents abandoning the child. one young mother told that she was still a student when she fell pregnant. she was not even aware that she was pregnant until the next-door neighbour brought it to the attention of her parents. she then gave birth to a child with disability and dropped out of school. the boyfriend, who was still a student at the time, rejected her after the birth of the child. she said about him: ‘whoo! that one did not buy even the vest for the child – he said in his family there has never been a disabled person.’ (pfgd3, male teacher) this appears to be an excuse coming from the father to justify his behaviour, thus enabling him to cope with his decision to abandon the child. the implication of such decision by a parent becomes detrimental to the child who ends up living a life of rejection. other parents resorted to taking the child to the community-based rehabilitation centres and thereafter the child is never visited and abandoned (thus shifting the responsibility). for the children who are abandoned at happy home, when contacted by the centre to respond to the needs of the child, they tend to distance themselves from the child. other parents, especially male parents, tried to find an excuse for their behaviour of distancing themselves from the disabled child as this quote from a mother of a disabled child highlighted: ‘he said in his family there has never been a disabled person.’ (pfgd1, male teacher) to a mother of a child with disability, this is a painful statement as within an african culture a child is seen as the extension of the family. this delinking of the child from the family by the father would be seen by the mother as a rejection of the child. sub-theme 2: held accountable reintegration of the child and mother to the family after a disability diagnosis has been established is usually a problem. it appears that the family too goes through their own process of dealing with the final diagnosis. the mothers of children with disability felt not welcomed by their family members once the diagnosis was final. this rejection is more painful if it comes from the father of the child with disability as this quote from another mother of a child with disability expands: ‘he said i gave birth to a disabled child i should bear the consequences; he would never give her any support because i must suffer the consequences of having a child with disability.’ (pfgd 2, male teacher) from the above quote, it appears that the disappointment of women giving birth to a child with disability. fathers appear to be shifting the blame to the mothers of children with disabilities by holding back support. sub-theme 3: culture and religion culture and religion played an important part in the lives of some of the participants, enabling them to accept their situations and to actively seek assistance for their children. the below extract expresses the words of a mother who faced extreme distress when she came to know that her child is disabled. but her worry was alleviated by her faith. ‘the day i was told that my child is disabled; whoo! i was so disturbed; i did not know whether there was a missing limb because the doctor and nurse did not explain what they mean when they say the child is not right; but again, i consoled myself all creations come from god, if i do not accept that this is my child who then will?’ (pfgd4, unemployed female) sometimes cultural norms and religion create undue stress for mothers of children with disabilities, as so many expectations are put on mothers having children with disability. there is a general fear of the reaction of the community with all its structure and how it will respond to a child with disability. as many of the villages in rural areas are still patriarchal, it becomes better for the mother if the child is accepted by the father. another mother had a different welcoming response from the father of the child, when asked about his reaction after the delivery of the child with disability. she said the following: ‘no mam; there was not any bad reaction from him; he was so supportive we go to the doctor together with him and the child, even at this moment.’ (pfgd5, unemployed female) the care and love shown by the father towards his son with disability supported the mother. that helped her to cope better with the condition of her child as she mentions the support she gets on taking the child to the doctor. sub-theme 4: ignoring the obvious some of the parents refused to accept that there is some form of disability in their children. some of the participants told about various coping mechanisms which they and their family members used to deal with the disability diagnosis whereby they sometimes shifted the blame to witchcraft. this comment shown below from one of the family members supports this: ‘it can either be witchcraft, partners’ fault or someone else must take the blame and then take care of the child.’ (cfgd6) the above statement showed some of the frustration of the carers and mothers of children with disability as they come back to family members seeking support. it appears that disability is not seen as a life event that happens randomly – somebody must take the blame. from this caregiver’s statement, it appears that this running around to accept the final diagnosis is linked to the need to shift the responsibility of taking care of the child with disability as it appeared that there is a need for somebody else to take the blame and that person must take care of the child. sub-theme 5: shifting responsibility parents tend to distance themselves and shift the responsibilities to those taking care of the child. for example, when one parent who had her child staying at happy home centre for children with disability, was contacted by the centre to respond to the needs of the child as the child was sick, she refused to come and see the child. she said the following: ‘one day i received a phone call that i should come to happy home to fetch him because he was sick, i was so annoyed, i asked what kind of a hostel is this?’ (pfgd1, unemployed female) it appeared from the mother of a child with disability that the institution that was looking after her child needed to also keep the child even when the child was sick. many of the parents stayed in rural areas where access to healthcare services was a problem; hence it appeared that this parent expected the centre to also look after the child when the child was sick. sub-theme 6: abandonment because of disability and health other instances of abandonment of children with disabilities by parents is sometimes because of health status – such as hiv or aids of one or both parents and the fear that the child with disability will also have a positive hiv or aids status – and this is compounded by blaming attitudes of who infected whom. ultimately, this may result in the abandonment of the child. this is highlighted by the words of a grandmother below, who was left caring for the child: ‘my grandson came with my son in 2003 from gauteng; he was one-year and one-month old. he told me that he was in love with a lady who accused him of infecting her with the disease. she dropped the child on the bed and off she went, leaving my sick son with the child.’ (cfgd3) theme 2: negative attitudes of the health professionals the lack of support by family members and the rejection of children in communities did not deter parents from looking for alternative support in caring for their disabled children. health professionals were generally considered to be the best source of support and information when it came to understanding issues relating to disability. as a result, parents expected doctors and nurses to offer good advice when discovering that a child has a disability. however, parents were often disappointed by the response and the kind of support received from health professionals. the participants shared their experiences as outlined in the following subsection. sub-theme 1: the nurses scolded me one participant shared the experience of trauma that she went through when she was delivering her child in the care of health professionals. despite telling the nurses that the baby was ready to be born, and that her waters had broken, they refused to listen to her saying the child was still far from being ready to be born. the statement below highlights some of the difficulties experienced by mothers when giving birth to their children within the public healthcare system: ‘the nurses scolded me asking if i once had a baby; didn’t i say this is my first child; they made mockery of me.’ (pfgd 2, male teacher) these challenges sometimes led to negative consequences as this parent seem to link the disability of her child to the slow response of nurses to her need for support during delivery. sub-theme 2: discouraging unsupportive feedback the way feedback from health professionals is given to the parents of the child with disability regarding the disability status of the child, especially the initial diagnosis and feedback on disability status, is very important. the manner in which this is done could either give hope or dash away the parents’ hopes for the recovery or development of the child with disability. this parent attested to this: ‘what i will never forget is what the doctor told me. he said my child will never be anything; will never do anything. he crushed all hopes…. i cried a lot until my husband said the doctor is not god. the child was born normal; she may change and be something else. i don’t want to see that doctor in my life.’ (pfgd3, male teacher) parents were left hopeless and those with partners were assisted by their partners in dealing with the prognosis which resulted in some of the parents never wanting to see the health practitioner again. this can further undermine any future relationship with the health professional. subtheme 3: late diagnosis undermines future prospects a majority of the parents received the diagnosis that their child has disability quite late when the child had already started school. this would commonly come from teachers who cannot see progress in the schooling of the child. what seems to be frustrating to the parents is a lack of knowledge from the teachers for the next step the parent should follow once the diagnosis has been made. this was shared by this mother of a child with disability: ‘i was called to visit the school where i was informed that my son cannot read or write at the age of 13 years and a referral letter was written for me for the social worker to apply for a child support grant and not for disability grant who will assist her with child social support grant. at that time, the child was old enough to go to a special school, the teacher refused to write a referral letter for the child to be admitted in a special school.’ (pfgd6, unemployed female) from this transcript, it appears that schoolteachers and their principals tend not to see the prospect and the need for further schooling of the child with disability once the child is seen as disabled. instead, they seem to be working within the medical model which suggests that the child should be referred to the social worker for a child support grant. theme 3: health and rehabilitation related challenges parents/caregivers considered family and professional services as crucial contact points of support with regard to addressing and coping with the challenges of having a disabled child. however, they were often disappointed in most cases because of the inaccessibility of professional support services and lack of support from family and the larger community, as their experiences indicate here below. sub-theme 1: long distances and accessibility to health services the scarcity of adequate healthcare services and the long distances to health facilities in poor communities is a problem for children with disabilities. poverty and lack of psycho-social support puts mothers of children with disabilities at risk during delivery time. one participant said: ‘i delivered at home; i was using traditional medicine because i had no money to go to the clinic… no one wanted to give me company since my mother got married to another man and left me when i was too young.’ (pfgd1, unemployed female) whilst another asserted that: ‘the day i will never forget is the day when i was taking my child to the clinic, which was too far, and at that particular moment she was having attack of fits.’ with the challenges of lack of health and rehabilitation services, some mothers of disabled children become so overwhelmed with those problems that they become homicidal, as confirmed by the statement below: ‘i was so scared, and i wished, i could give him poison so that he can die and be relieved from this great pain and even the clinic is too far. i thought the tank tablet [she was referring to the pesticide people locally use it to commit suicide, it is quick, people die within thirty minutes] was a quick solution; but i did not do it. i thought she is my own blood; god does not allow anyone to kill, to take away human being’s soul no matter what type of a person; is not the right thing to do, i did not do it.’ (pfgd2, unemployed female) sub-theme 2: resort not to access health services when asked how parents perceive the accessibility of healthcare and rehabilitation services in their areas, all seemed to be pointing to the fact that the clinics are too far away and that inadequate transportation facilities is a problem. for other parents it was a matter of choosing between the school and the healthcare service that was far away. most of them resort to not taking their children with disability to healthcare services because of distances and transport problems as attested by the father of the child with disability: ‘i decided to keep the child at home since she is still attending mainstream school in the area. i did not see any need to start physiotherapy treatment since there is no money to transport the child everyday she needs to go to bedford hospital which is near the town.’ (father of child with disability during in-depth interview) he ended up by saying: ‘if the health centres were nearer we would be happy to take our child to the hospital but under the circumstances we decided to live with the condition.’ sub-theme 3: risking one’s life to gain access to health services the lack of access to healthcare and rehabilitation services expose parents of children with disability to risking their lives and that of the child as attested by this statement: ‘my child was suffering from toothache, the clinics were far, and there was no money to pay for the transport, i had to go out first to borrow some money and the rivers were flooded after a heavy rain i was going to cross the river to langeni clinic, which was too far. i was prepared to take risk alone after getting the money i borrowed from neighbours i put my child at my back going to cross the river praying for our safety. i covered my head and that of my child with my dress and through god’s grace i managed to cross the river and my child was saved from the pain of tooth ache.’ (pfgd2, unemployed female) all the parents agreed that the problem of healthcare centres that are too far away is still a problem. they felt that in the clinics there is poor care and negative attitudes towards disability; there is no supervision and nursing staff are doing as they please. theme 4: lack of support from family and community extended family members were a source of support for some parents, whilst in other cases the attitudes of the extended family members were either hurtful or damaging. the abandonment of a parent by the extended family and/or a partner causes the parent to weigh up the extent of her or his loyalty between the family, partner, and the child with disability. usually, the child with disability becomes the loser. these issues were evident in parents’ articulation of their experiences of raising a child with disability. sub-theme 1: my child was ridiculed many family members tend to use negative coping skills such as mockery towards the child with disability. the mother of a child affirms this about her mother in-law: ‘she would mock my child when there were visitors within the home, even when everyone was laughing because there was something amusing them; she would utter discouraging words to the child saying; “whoo! this one is laughing louder because of her disability.”’ (pfgd5, unemployed female) it appears that as relatives struggle with accepting that their relative child has disability, they are not sure how to cope with the child with disability especially when there are visitors. sub-theme 2: spiteful family members it appears that there is a general lack of understanding, attitudes, and support from family members. having a child with disability left the family members with bad feelings, which are translated to the mother and the child, especially if the disability is visible and identifiable, as supported by the statement below: ‘the whole family was disturbed when i came back with the child from hospital, the disability was visible the child had squinty eyes.’ (pfgd5, unemployed female) sub-theme 3: disability myths leading to exclusion as parents/caregivers narrated their different stories, it appears that there is generally a negative attitude towards, and lack of understanding about, disability within rural south african communities. one parent shared about how challenging it was for her family raising a son with disability in a community that refused to see him as a child and accept him as they did other children. ‘mhh! even neighbours did not want him to visit their children; because he used to go out to play with other children; parents said he must not play with others because he is something else.’ (pfgd3, unemployed female) sub-theme 4: humiliation at school lead to further exclusion the negative attitudes of teachers and the teasing of children with disability by their peers make children with disabilities feel excluded in their schools even if there was no problem in the family. sadly, in schools the rejection came from both teachers and peers, as indicated in the few examples shared by parents below: ‘there was no problem in the family, only at school where she was a mockery, statements like she is stupid, senseless is even seen as she walks that she is an imbecile.’ (cfgd 3) this is supported by the next parents: ‘the challenge was at school where they made mockery of her saying she is limping.’ (cfgd 3) sadly, the rejection also came from teachers, whom children often look up to and call on in times of trouble at school. this parent shared how inhumanly his teacher’s son responded when her son got involved in an accident that left him intellectually and physically disabled. the teacher responded that she was happy that the son got involved in the accident since he was then not able to attend school. ‘she said; she was relieved since he was the youngest in the class he was giving her problems.’ (pfgd3, unemployed female) another parent said his son was mocked by other students and they used to tease him for his lack of progress saying that; ‘he was not progressing at school and they were pointing fingers at him saying he is just coming for nothing.’ (pfgd3, unemployed female) sub-theme 5: resorting to fend for oneself the rejection by family members results in the parents of children with disability resorting to fending for themselves. the mothers of children with disability continue to look for solutions and resources alone and unsupported. some were able to find solutions along the way, even if they had to travel distances to obtain these solutions, as attested by the mother of a child with disability: ‘at red cross hospital we were given health education combined with black and white parents of children with disabilities; i discovered that the problem of disability is for all races; it has nothing to do with me and since then i started coping with her condition.’ (pfgd3, unemployed female) discussion four themes were used to guide the discussion. these were as follows: challenges with disability diagnosis; negative attitudes of the health professionals; healthand rehabilitation-related challenges; lack of support from family and community. challenges with disability diagnosis from the findings of the study, when parents start to understand that the disability diagnosis is final they start looking for someone to blame which is usually the mother of a child with disability. this then gives the father of the child with disability an excuse to abandon both the mother and the child. similarly, tigerera and makhubele (2019), yaacob et al. (2021) and taderera and hall (2017), in their studies found that the majority of mothers were deserted by their partners after giving birth to a child with disability. if the father of the child with disability does not abandon his family, the next challenge would be how to integrate the child with disability into the extended family. however, if the father of the child with disability is not supportive he can end up distancing himself and his family from the child with disability by suggesting that no one in his family was ever born with disability. for the extended family to still accept the mother and the child with disability as part of their family, this is done either by ignoring or underplaying the disability diagnosis. this is similar to other rural communities such as in sikhukhune village in sa, kenya and malawi, whereby parents hid their children in fear of being ridiculed (gona et al. 2011; paget et al. 2016; taderera & hall 2017). some ill-treated them as a result of the overwhelming cultural pressures they encountered whilst facing the unchanging conditions of their children (gona et al. 2011; paget et al. 2016). homes for children with disability such as happy home are few in the ecp and if the child with disability is admitted to such homes this gives the family some form of relief from caring responsibilities. such homes are usually also reasonably closer to healthcare services. but if the child gets sick, the parents of children with disability are reluctant to pick up the child because of where they stay, as they struggle to gain access to healthcare services. this can easily be seen as abandonment of the child at the time when the child most needs the attention of his or her parents. during such times, such places might feel that the parents of children with disability are shifting the caring responsibility to them. ensor and cooper (2004) had highlighted the need to give attention to ways to minimise barriers to healthcare services, as these barriers can further prevent poor families from benefitting from public healthcare services. other sicknesses such as hiv and aids in the family further heightens the fear that over and above the disability diagnosis of the child she or he might have contracted this condition, and this might lead to one of the parents deserting the child – especially the one who feels she or he was the one infected by the other. all participants agreed that parents react differently to the birth of a child with disability. all parents or caregivers in the study agreed that having a child with disability was a painful experience. some parents, however, either the mother or the father or both, abandoned the child with disability. in some cases, the responsibilities for the child with disability were then taken up by extended family members who addressed the needs of the child with disability and accessed government disability grants. the findings in this small-scale research study coincide with several studies on caregiver problems in rural context including challenges that caregivers or parents experience in dealing with disability diagnosis and coping with challenges as highlighted in the introduction section of this article (bunning et al. 2017; eide et al. 2015; ensor & cooper 2004; hemming & akhurst 2009; gona et al. 2011; masulani-mwale et al. 2016; paget et al. 2016). negative attitudes of the health professionals it appears too, that in this small-scale study, teachers are caught within the medical model and tend to want to associate the child with disabilities with social workers to gain a child support grant, not a disability grant as expected. the parents on the other side would like the education of the child to continue even if it is in a special school. it appears that there is also a need to upskill teachers with regard to disability and early childhood development, especially teachers who are involved in early childhood education as, together with health professionals, they too are at the coal face of caring for the growing child (tshabalala 2014). the public health systems in sa are overburdened and overstretched (mji et al. 2017; vergunst et al. 2017). this makes the health professionals run from pillar to post trying to cope with the high volume of patients. from the participants in this study it appears that some disabilities could have been prevented if the response rate from carers within the nursing profession was attentive enough and that listening to the patient and using this as a guiding light could deliver proper caring. blitz (2011) in his book that espouses client-centred care, emphasise the following attributes in client-centred care: there is a process of listening, observation, learning, application and practice. the nursing profession is seen as one of the caring professions. but nurses, because of being thinly spread and working in public health systems similar to the one explained above by mji et al. (2017) and vergunst et al. (2017), it appears they start shutting up and speaking down to their patients, and eventually this becomes the norm. this supports eide et al’s findings about negative attitudes of health professionals towards persons with disabilities. it is during this time that skills highlighted by blitz (2011) disappear through the window and it is also during this time that birth mistakes easily happen. the doctors in the public sector also work under the same working conditions whereby it becomes easy to quickly give a final diagnosis that leaves parents with no hope. the medical model further endorses this type of thinking whereby doctors tend to see disability as lack of abilities. giving feedback in a manner that is demoralising and does not give hope to parents of children with disabilities can further discourage them and undermine the urgent need to start planning on how they will support the child with disability. gona et al. (2018) attest that health professionals underestimate the emotional distress and the need for information experienced by the carers of children with disabilities. together with this is a combination of social factors such as fear for the future, stress, rumour-mongering and poverty. in public health institutions, doctors are still seen as people who should role-play the important attributes of the public health model. if they present a level of lack of consideration for the parents and the child with disability it is easy for the other health professionals to imitate that type of behaviour. bradshaw (1996) cautions that true caring is usually underpinned by qualities such as democracy, reciprocity, collaboration, and role modelling. it is also easy for some of the impairments and disabilities to manifest quite late during the growth of the child. it is also common for intellectual disabilities to be uncovered quite late and it is usually the teachers who discover this challenge. health and rehabilitation related challenges parents or caregivers said it is difficult to access healthcare facilities when their children are sick because of the long distances they have to walk to access transport. distances and poor roads make it difficult for parents to gain access to health and rehabilitation of their children. sometimes the parent of a child with disability may risk their life and that of the child trying to gain access to healthcare services. vergunst et al. (2015) highlighted the plight faced by wheelchair users in taxis in the rural areas of sa. even when the person ultimately reaches the clinic or hospital, there is no guarantee that they will receive the service they require because of poor service delivery. some of the parents ultimately resort not to take the child to healthcare and rehabilitation services. this has huge implication for the future prospects of the child as the child grows and, without health and rehabilitation intervention, impairment and disability may continue to undermine the movement of the child, including other development-related activities. this lack of intervention further undermines the possibility of the child being able to gain access to basic amenities such as schooling and playing with other children (grut et al. 2009). for mothers of disabled children who are already facing the challenges of poverty and access to health and rehabilitation services, this implies that it becomes an unsurmountable task to make further efforts to explore integration of the child with other children and the inclusion into community; so the child ends up being isolated (bunning et al. 2017; taderera & hall 2017; vergunst et al. 2017; yaacob et al. 2021). lack of support from family and community the study revealed that, whilst a parent struggles in the process of making sense of and accepting the diagnosis of a disabled child, cultural beliefs exert more pressure on the parent rather than providing help. the stories shared by mothers of disabled children show that the extended family members mocked and taunted the disabled children in the family, causing much hurt to the parents. the parents reported that even close relatives still think that a disabled child should not be seen by visitors because she or he is an embarrassment to the family. as a result, the child becomes isolated and both the cognitive and physical development of the child gets delayed. the cultural beliefs, norms, and values of xhosa speakers in the rural eastern cape are entrenched in the society and directly affect the negative behaviour towards pregnant women and disabled children (mji 2012; tshabalala 2014). these beliefs, norms and values increased the stress experienced by parents or caregivers. the parents shared their different stories that revealed that these beliefs still oppress females in rural sa. these ranged from the child being bewitched to cultural values meaning that you cannot leave your in-laws no matter what. mbwilo et al. (2010) and hemming and akhurst (2009) further affirm that such beliefs and responses towards mothers of children with disability are still quite common in rural sa. a study by tigerera and makhubele (2019) concurred with the findings of this study that parents of children with disabilities get subjected to name labelling as they are viewed to be practising witchcraft or to be paying for the sins they committed. with regard to education, whilst within the context of inclusive education policy, teachers would ideally assist in facilitating relevant support for the parent and the child, when the child coincidentally ends up in a school setting, rejection by teachers and peer mocking caused more harm to disabled children (dosd 2015; gargiulo 2006; tshabalala 2014). limitations and further recommendations for this study because of the size of this study, the findings cannot be generalised. however, the experiences shared by the parents outline the vital issues affecting parents of children with disabilities. this could provide valuable information for further studies. conclusion and recommendations in this study, the challenges faced by parents of children with disabilities have been explored. the most prominent themes that arose were challenges with disability diagnosis, the negative attitudes of health professionals, healthand rehabilitation-related problems, and lack of support from families and community. the findings of this study have pointed strongly to the ‘black hole’ in which parents find themselves trapped in the process of accepting the disability diagnosis and responding to the needs of a child with disability. the participants confirm that it is more challenging for parents in rural settings with scarce healthcare and rehabilitation services to support the child with disability. the stigmatisation of parents by their families and communities puts more pressure on them. it also appeared to the parents of children with disability that the role that could be played by family and community in supporting children with disabilities cannot be undermined. to conclude, this was a small exploratory study. additional researches are required to further confirm the findings of the study. acknowledgements we gratefully acknowledge the support of parents of children residing at happy home, who contributed their time and knowledge towards this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions v.v.d. carried out the research for a master’s degree under the supervision of g.m. the three authors drafted the article with n.t. coordinating the process. n.t. and g.m. did thorough revisions to ensure that the article meets the level of acceptability for an academic article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data 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maria kett mariette swanepoel mark harniss marlie enright marubini c. sadiki mary wickenden maryke geldenhuys matumo ramafikeng maximus m. sefotho mershen pillay michelle botha minerva rivas verlade mokgadi k. mashola molebogeng s. motseke mpilo booi mpofu jabulani munyaradzi chimara naaheeda allie nafisa mayat naimah ebrahim khan newman tekwa nicholas a. odero nicola a. plastow nicola m. deghaye nicolette comley-white nokuthula tinta nomfundo f. moroe nora groce noreth muller-kluts nowell chidakwa http://www.ajod.org� https://ajod.org mailto:submissions@ajod.org https://ajod.org https://ajod.org/index.php/ajod/user https://ajod.org/index.php/ajod/user mailto:publishing@aosis.co.za page 2 of 2 reviewer acknowledgement http://www.ajod.org open access ntandoyenkosi l. msomi ntombizivumile hankwebe nurul h. rofiah nyaradzai e. munambah okechukwu v. nwokorie pam j. gretschel paul l. leshota phoebe runciman pierre d. turikumana rabbi abu-sadat raymond chirowamhangu rentia a. maart robert ngarambe robert gould ronel davids rosemary j. luger roshanthni subrayen rowena naidoo roy mcconkey samantha adams sandra makwembere sarah crawford-browne seyi l. amosun sharon kleintjes sherpard nyaruwata sibonokuhle ndlovu sibulelo gawulayo sioux mckenna siyabulela mkabile soundararajan kannan sumaya gabriels surona j. visagie susan hillier swaibu zziwa tamara chansa-kabali tamlyn c. mckenzie tania de villiers tanya l. bekker tarek m. nasrallah tawanda makuyana terry j. ellapen theresa lorenzo tonderai w. shumba tongai f. chichaya toni abrahams trevor moodley tseane-gumbi lisebo uwe hermann vanessa abrahamson vesper chisumpa victor j. mckinney wahbie long warren p. charles zara trafford zimbini ogle http://www.ajod.org� acknowledgement to reviewers abstract introduction research methods and design results of the study discussion conclusion and recommendations acknowledgements references about the author(s) nettie n. ndou-chikwena department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa maximus m. sefotho department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa nausheen ameen department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa citation ndou-chikwena, n.n., sefotho, m.m. & ameen, n., 2025, ‘resilient narratives of a single mother raising a child with autism spectrum disorder: a neurodiversity perspective’, african journal of disability 14(0), a1727. https://doi.org/10.4102/ajod.v14i0.1727 original research resilient narratives of a single mother raising a child with autism spectrum disorder: a neurodiversity perspective nettie n. ndou-chikwena, maximus m. sefotho, nausheen ameen received: 27 mar. 2025; accepted: 28 july 2025; published: 28 oct. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: research on experiences of mothers with children living with autism spectrum disorder (asd) has predominantly focused on psychological distress and caregiving burdens, presenting deficit-centred narratives which inadequately capture other complex narratives of single mothers. objectives: this study explored the experiences of a south african single mother, buhle, in raising a daughter with asd, focusing on resilience development and acceptance within cultural contexts where asd and her social status are misunderstood. the study adopts neurodiversity theory and the concept of resilience as its conceptual framework. method: employing an interpretivism paradigm and a single case study research design, data were collected through semi-structured and unstructured interviews. ethics approval was obtained from the university of johannesburg. buhle provided informed consent, allowing her information to be used for research. results: narrative analysis was used to delve deeply into buhle’s personal and emotional experiences. these narrative themes emerged: navigating the initial trauma of prognosis and diagnosis, building a network of understanding, managing resources without shared responsibilities and transforming challenges to empowerment through social networking, education and advocacy. conclusion: the findings challenge deficit narratives by revealing how some single mothers can foster resilience despite significant challenges in raising neurodivergent children in an african cultural context. the south african government’s provision of social and economic support also partly enables resilience. contribution: community-based initiatives should boost public awareness and alleviate the cultural stigma surrounding neurodevelopmental conditions; prioritise resilience, strategy sharing, and advocacy to empower single mothers from survival to empowerment. public healthcare support services must be improved. keywords: asd; single mother; experiences; neurodiversity; resilience; culture; south africa. introduction autism spectrum disorder (asd) is a complex neurodevelopmental condition characterised by atypical communication, language development, as well as restricted and repetitive behaviour patterns, interests or activities (johnson 2023). the current body of research focuses on the experiences of parents, families and caregivers of children with asd and has largely concentrated on aspects such as psychological distress, caregiving burdens and vulnerability (dira, machailo & scholtz 2024; mazibuko et al. 2020; ndlovu 2021; van niekerk, stancheva & smith 2023). although these studies have yielded significant insights regarding the difficulties encountered by these groups, they often present a one-dimensional narrative that emphasises deficits and struggles over adaptation and personal growth. this ‘deficit’ narrative, as described by van der mark et al. (2019), may unintentionally create a sense of vulnerability and victimisation, which simplifies the complex realities of motherhood. the complex and evolving experiences of single mothers, who often navigate different phases coupled with the social and cultural stigma of being single and of raising a child with asd, from initial stress and adjustment challenges to the development of resilience, coping strategies and, ultimately, acceptance, are not captured yet. to address this gap, this article presents a case study on the narratives of a single mother, given the pseudonym buhle, who shares her experiences in caring for her daughter with asd. her journey towards resilience and acceptance provides valuable insights into this understudied perspective. the study utilised neurodiversity theory and the concept of resilience as its conceptual framework. this article critically examines current literature on parental, family and caregivers’ experiences in raising children with asd. next, we present the study methodology, results, discussions, conclusion and future research directions. conceptualising maternal experiences in raising children with asd research on neurodivergent individuals has gained prominence as a crucial theme in african literature, signalling a broader societal shift towards inclusivity and representation. among the diverse range of neurodevelopmental conditions, asd has attracted considerable interest (kopanska et al. 2021). literature has covered issues and complexities on diagnosis and identification, support services for children with asd in educational and health institutions, and experiences of professionals, parents, families and caregivers in caring and supporting children with asd. autism spectrum disorder is a multifaceted neurodevelopmental disorder distinguished by challenges in two primary domains: social communication and the presence of restricted or repetitive behaviours and interests (abebe 2020). symptoms associated with asd typically appear in the initial years of a person’s development and can result in significant difficulties in social, occupational or other important aspects of functioning (johnson 2023). autism spectrum disorder may also be referred to as a social disability, as individuals affected by it often experience challenges in forming and sustaining relationships with others because of deficiencies in communication and interaction skills (johnson 2023). parenting a child with asd can be a demanding and stressful endeavour, especially in nations where access to various support services is restricted (papadopoulos 2021). challenges are also intensified by factors such as poverty, insufficient resources, limited understanding of the condition (mbanjwa & harvey 2023) and cultural factors (aderinto, olatunji & idowu 2023). the burden of care for a child with asd rests predominantly on the mother, as societal stigma and discrimination surrounding disabilities can lead fathers to neglect their parental responsibilities (mbanjwa & harvey 2023). research indicates that levels of parenting stress and depressive symptoms are notably elevated among mothers (johnson 2023). mothers of children with asd face increased psychological distress, a greater caregiving burden, diminished resilience, and various health-related challenges (johnson 2023; papadopoulos 2021). according to pottas and pedro (2016), mothers usually dominate as participants in terms of numbers in studies exploring parental or caregivers’ experiences in caring for and supporting children with asd. for instance, in a systematic review study by depape and lindsay (2016), in 31 articles selected for inclusion, 160 fathers and 425 mothers were involved. furthermore, in a study by van niekerk, stancheva and smith (2023), which aimed at describing the socio-demographic profiles and determining the extent of the burden experienced by caregivers of children and adolescents with asd, 56 out of 77 participants were mothers. reed and osborne (2019) outline temporal stages experienced by parents of children with asd, and the experiences of the mother are emphasised. these stages are prognosis, followed by obtaining a diagnosis and contact with healthcare and social service professionals and the final stage of acceptance, coping and resilience (reed & osborne 2019). these stages are not fixed at a particular point in time and differ according to environmental factors, cultural factors, and even personality traits. culture refers to a set of values, beliefs, preferences, and behaviours shared by a group in a particular society, which are handed down from one generation to the next (mpofu 2024). cultural beliefs and practices shape attitudes towards asd in most african contexts (aderinto et al. 2023). the stigma perpetuated by cultural beliefs views neurodevelopmental conditions as taboo or caused by supernatural factors; there is a myth that such conditions are a form of punishment (aderinto et al. 2023). culture also shapes gender norms, which are societal expectations and stereotypes regarding the roles and behaviours considered appropriate for individuals based on their gender (nartey, bahar & nabunya 2023). in african contexts, cultural values, beliefs, and gender norms contribute to the delays in asd prognosis and diagnosis. a systematic review by issac et al. (2025) concluded that in low-income countries, cultural values and traditional practices contribute to delayed diagnosis and reduce the accuracy of estimates of asd prevalence. in the first phase of asd prognosis, the mother is the first point of contact; she is the first to notice differences between her child and other children (grebe et al. 2022). during this period, focus revolves around understanding the nature of the child’s condition, feelings of parental inadequacy and unfit for motherhood (reed & osborne 2019). this is followed by the process of obtaining a diagnosis and contact with healthcare and social service professionals (reed & osborne 2019). the mother also enters a period of seeking health and social support for herself because of the levels of stress and for the child (reed & osborne 2019). she experiences the impact of behavioural problems exhibited by the child and attitudes from their family members and the surrounding community. the final stage is acceptance, coping and resilience. resilience is the capacity to adjust or adapt positively to stress or hardship, facilitated by a process that includes both internal and external characteristics (stein, hoeft & richter 2024). internal attributes consist of personal qualities inherent in resilient individuals. external attributes are the environmental factors that bolster resilience, such as the support provided by family and social networks (stein et al. 2024). the mother develops ways to cope with the child, such as balancing the needs of the child and her psychological well-being. organisational patterns, including family routines, flexibility in a family’s day-to-day functionality and planning and the ability to constantly adapt to changes such as family roles, rules and lifestyle, are also a source of resilience (dürr & greeff 2020). however, not all mothers get to this final stage. social and cultural stigma, which manifests in many forms such as negative labelling, rude comments, being blamed for the child’s condition and rejection (mclean & halstead 2020), hampers the mothers’ transition to this stage. in addition, in developing countries, there are limited resources, such as rehabilitation and care services for mothers with children with special needs to find comfort and support (singh & kumar 2022). hence, the responsibility of the child’s growth falls solely on the shoulders of the mother, and she goes through a vicious cycle of psychological stress and burden with limited support (singh & kumar 2022). there is an emerging body of knowledge in the south african context on the parental, family, mothers’ and caregivers’ experiences in caring for and raising children with asd, with the majority focusing on general caregiver experiences and challenges (blumberg 2015; dira et al. 2024; fewster & guruya 2015; lentoor, thuli & maepa 2023; mazibuko et al. 2020; ndlovu 2021; reddy, fewster & gurayah 2019; van niekerk et al. 2023). common findings of these studies are significant psychological, emotional and financial burden on caregivers; resource limitations and poor or limited guidance from health professionals; social judgement, isolation and stigma; limited awareness of asd; and challenges in diagnosis processes. literature reviews by phetoe et al. (2023) and mofokeng et al. (2023) synthesise existing literature on families’ psychosocial experiences and the prevalence of asd in south african contexts. research studies by karrit (2022), berson and adams (2024), and karrit and coetzee (2025) examine the impact of the coronavirus disease 2019 (covid-19) pandemic on children with asd and families. common findings include disrupted routines causing significant stress, interrupted access to support services and increased parental burden. while these studies capture the experiences of parents, families and caregivers in raising children with asd, there is an overemphasis on deficit narratives. literature focuses disproportionately on psychological distress, vulnerability and caregiving burden rather than resilience and acceptance. it is also important to draw attention to two research studies that examine coping strategies and resilience in caregivers of children with asd. sumbane (2024) reveals emotion-focused (positive reappraisal, acceptance, and denial) and problem-focused (active coping and peer support) strategies. the study provides a comprehensive examination of both emotion-focused and problem-focused coping strategies. however, there are some elements of a deficit-focused approach in emphasising negative coping strategies such as self-isolation, denial, religion, overprotection and punishment. the study fails to acknowledge the development of resilience over time, particularly how some individuals transition from challenge-focused to strength-based resilience. fewster and gurayah (2015) develop a practical roadmap to coping with asd for practitioners when supporting parents of children with asd and emphasise the role of practitioners in providing psychosocial support to parents. however, these insights are practitioner-focused rather than exploring the development of parents’ resilience; the study emphasises external support rather than internal resilience building. there is also limited literature on the experiences of single mothers of children with asd. the term single parenting describes a scenario where one parent, either the mother or the father, solely undertakes the responsibilities of raising and nurturing children in the absence of the other parent (ali & soomar 2019). a single-parent family can be formed through various circumstances, including the death of one parent, divorce or abandonment (birara 2021). in some cases, a single mother is a woman who has never been married. the woman may set out to have a baby with the intention of raising it alone or involuntarily when she bears a child in the hope that the father will marry her (birara 2021). single parenthood is strongly gendered, as most single parents are mothers (maldonado & nieuwenhuis 2019). it also appears that the gender of a single parent plays a significant role in shaping social attitudes, with mothers encountering more negative perceptions than fathers. society tends to view single mothers as individuals who have been unable to sustain a relationship, thus neglecting their obligation to provide a secure family setting for their children (dor 2021). additionally, they may be seen as having entered parenthood involuntarily, often because of unexpected pregnancies or unwise personal decisions (dor 2021). consequently, single mothers are frequently perceived as unhappier, deviant, troubled, and lacking in effective child-rearing capabilities compared to their counterparts (dor 2021). on the other hand, the societal perception of single fathers tends to be more positive, as they are regarded as responsible and caring figures in their children’s lives (dor 2021). this favourable view is often a result of their need to take on parental duties because of situations such as the mother’s passing or her incapacity to fulfil her expected roles (dor 2021). in south africa, a significant number of children are brought up by single parents, who are mostly mothers (purmasir 2018). according to a survey conducted by the south african institute of race relations (sairr) in 2013, merely 33% of children in the country reside with both parents. the findings further indicated that slightly more than 39% of children live solely with their mothers, while only 4% are raised exclusively by their fathers (purmasir 2018). in the same vein, statistics south africa (2024) unveils that most children live with only their mothers because of labour migration of the fathers, as well as low marital rates of mothers. there is a limited body of literature addressing the experiences of single mothers raising children with asd. although a study by purmasir (2018) examined experiences of single parents of children diagnosed with asd, the study generalised single parents and included single mothers, fathers and grandmothers. we argue that single parenthood is highly gendered, and single parenthood negatively affects mothers more than fathers (dor 2021; maldonado & nieuwenhuis 2019). this represents a critical void, as single mothers face unique experiences they navigate while raising a child with asd. these complications revolve around financial constraints, the cultural and societal stigma of being a single mother, as well as the difficulties compounded by the myths and stereotypes associated with neurodevelopmental conditions, which may be perceived as a punishment from god (aderinto et al. 2023). thus, the intersection of single motherhood and raising a child with asd within these cultural contexts presents a unique experiential landscape that requires focused academic enquiry. to our knowledge, a study by mthimunye (2014) is the sole study that has investigated the experiences and coping mechanisms of six single mothers in a low-income community in the western cape province of south africa. the study unveiled challenges such as a lack of knowledge, inexperience, personal challenges and society’s perceptions of asd. the support from family and community contributed to resilience development and coping to outweigh the challenges. unlike mthimunye’s deficit-focused approach, this study employs a strength-based neurodiversity framework that celebrates neurological differences and explores transformative growth processes. the gap between these two studies allows this research to benefit from contemporary understanding of asd and a shift from external support dependency to internal resilience development. this study represents the first south african research to examine single motherhood and asd through a comprehensive neurodiversity resilience lens. we advance an understanding of buhle’s experiences by emphasising both the difficulties she encountered and the strengths acquired by concentrating on her story of adaptability and resilience over deficiencies and challenges. the goal of this study is to change the perception of single mothers as victims of life circumstances to proactive, empowered mothers who gain significant psychological resources and skills along the course of their parenting journey. merging the two theoretical perspectives, namely, neurodiversity theory and the concept of resilience, establishes a comprehensive viewpoint for exploring the experiences of a single mother raising a child with asd. the neurodiversity theory the conceptualisation of disability has evolved considerably in the last 50 years, as illustrated by the world health organization (who) disability classification manuals. the traditional medical model regarded disabilities as personal impairments and dysfunctions (goldberg 2023). conversely, the more recent social model has framed disability as the incongruence between an individual’s abilities and needs and the environmental conditions regarding accessibility and accommodation (goldberg 2023). this shift from the medical to the social model signifies a fundamental change in perspective, viewing disability not merely as an individual issue, but as a construct shaped by societal factors (goldberg 2023). neurodiversity represents a contemporary approach to acknowledging individuals who possess neurodevelopmental variations (vanderburg, pagán & pearson 2024). in the late 1990s, sociologist judy singer introduced the term neurodiversity to the academic sphere to present a new perspective on the variations in human perception and communication styles (goldberg 2023). the framework seeks to transform the perception of neurodiverse conditions across educational, clinical, research and societal contexts (lerner, gurba & gassner 2023). neurodiversity shifts the focus away from perceived behavioural limitations and underscores that individuals grow and develop in distinct ways (vanderburg et al. 2024). diagnoses such as asd and other conditions are regarded as natural, alternative developmental paths rather than as disabilities (vanderburg et al. 2024). a lack of alignment between an individual and their environment can lead to detrimental outcomes, including mental health challenges and burnout (vanderburg et al. 2024). this framework addresses the main weakness of the former two models: failure to view disability from the ‘affected’ person’s perspective. the concept of resilience the concept of resilience is often defined as a personality trait or a combination of traits that reflect an individual’s ability to cope with difficulties and return to a state of stability (park et al. 2021). it is also perceived as a process or capability that can be improved or learned (park et al. 2021). the evolution of the concept of ‘resilience’ can be traced back to the 1800s (william 2024). until the 1950s, it was predominantly examined in psychological literature through the lens of unconscious defence mechanisms (grygorenko & naydonova 2023). in the 1960s, the focus transitioned to conscious coping strategies, and by the 1980s, the framework evolved to incorporate protective and risk factors (grygorenko & naydonova 2023). research dissemination in multiple fields of psychology has aimed to ascertain whether resilience is a fixed personality trait or a dynamic state (grygorenko & naydonova 2023). the emphasis is placed on identifying the traits of individuals who have thrived and succeeded despite facing significant challenges, such as parenting a neurodivergent child in a cultural environment that stigmatises both social status and neurodevelopmental conditions. figure 1 presents a conceptual framework on how buhle fosters acceptance and resilience while nurturing her daughter with asd in an african cultural environment. the framework merges neurodiversity theory, which views asd as a natural variation and focuses on unique strengths rather than deficits, with the resilience concept, which explores how individuals adjust and succeed through internal psychological assets and coping strategies. the diagram illustrates cultural factors, such as the stigma surrounding single motherhood, the stigma associated with asd, societal expectations, and cultural interpretations, as central and evolving influences that both shape and are shaped by various theoretical perspectives. bidirectional arrows illustrate the dynamic interactions between cultural context and theoretical frameworks, emphasising that cultural factors are not static background elements, but rather active forces that perpetually influence the mother’s journey. this comprehensive approach transcends simplistic narratives of vulnerability, emphasising the mother’s agency, adaptability, and personal development, acknowledging her as a proactive individual who cultivates significant psychological resources throughout her parenting experience. figure 1: a conceptual framework for understanding single mothers’ experiences in raising children with autism spectrum disorders in african cultural settings. research methods and design research paradigm the selection of a research paradigm influenced the methodologies employed and the results obtained in the study (william 2024). the philosophical underpinnings of this study were based on the interpretive paradigm. the interpretivism paradigm holds the belief that individuals construct knowledge based on their interpretations and experiences. this paradigm used subjective interpretation and constructed new theoretical and social constructs through studying human behaviour and social phenomena (william 2024). interpretivism enabled capturing in-depth data on the subjective experiences of the single mother in raising her daughter with asd. although this paradigm has been questioned on the generalisability of the research findings to other contexts (pulla & carter 2018), this study was not concerned about generalisations, as its main thrust was to unveil rich, nuanced and subjective experiences faced by buhle in caring for and supporting her child with asd within the south african cultural context. research design a single case study was adopted for a holistic examination of the issue under study (ed. salkind 2010). this study deliberately employs this design, as its primary objective is to unveil the rich and subjective experiences faced by buhle in caring for and supporting her child with asd (coombs 2022). deeply contextualised single cases often reveal the unique and complicated insights that larger samples might overlook. this case was considered distinctive as it illuminated issues of resilience and acceptance, themes that have received limited scholarly attention in research examining maternal experiences of caring for and supporting children with asd in the south african context. participant selection and data collection techniques buhle, a 39-year-old single mother of two, was purposively selected for this single case study from the centre for neurodiversity’s database of parents of children with asd. her eldest child has been diagnosed with asd. the selection criteria included being a single mother caring for a child with a formal asd diagnosis and willingness to share in-depth personal experiences. the participant was contacted and invited to participate through a telephone invitation. data were collected through a semi-structured interview and an unstructured interview. trust and depth were acquired through interviewing the same participant repeatedly (osborne & grant-smith 2021). this longitudinal approach allowed for the development of rapport, explorations of emerging narrative themes and member checking in case of misinterpretations. although interviews tend to be time-consuming, they were utilised to get to the heart of personal experiences and to get a sense of the context of the mother’s worldview and how her experiences contribute to knowledge in conceptualising the maternal experiences in caring for and supporting a child with asd (osborne & grant-smith 2021). data analysis narrative analysis enabled researchers to explore buhle’s personal and emotional experiences as a single mother raising a child with asd. this approach facilitated an understanding of the psychological, emotional and social experiences she has had (benson 2018). narrative analysis functions as a qualitative research approach that emphasises stories as data, facilitating a more profound comprehension of human experiences and identities (bamberg 2012). researchers engaged in this form of analysis to derive a variety of interpretations and conclusions that are both meaningful and focused on different aspects (parcell & baker 2017). these aspects included how the story is structured, its substance, its function and how it is told (parcell & baker 2017). hence, narrative analysis provided insights into how cultural, social and economic contexts influence the experiences of single mothers raising children with asd. the narratives were transcribed, then read repeatedly for familiarisation, holistic understanding, and the identification of patterns and themes (nasheeda et al. 2021). ethical considerations ethical considerations were prioritised throughout this research. ethical clearance to conduct this study was received from the university of johannesburg faculty of education research ethics committee (sem 2-2020-055). buhle was contacted and invited to the centre, where the aims of the research project were thoroughly explained. buhle provided informed consent, allowing the researchers to use her information for research purposes. voluntary participation was also strongly emphasised in the consent form. a pseudonym was used to ensure confidentiality and anonymity, and the data were stored securely. recognising the potential vulnerabilities of single mothers raising children with asd, interviewers avoided judgemental language, built rapport to ensure the participant felt at ease and maintained follow-up contact to support her well-being. this research was conducted through a neurodiversity-affirming lens, recognising her expertise in the issue under study and avoiding pathologising language about asd or other conditions she disclosed. results of the study the following narrative themes emerged from the study: navigating the initial trauma of prognosis and diagnosis, building a network of understanding, managing resources without shared responsibilities and transforming challenge into empowerment. these themes align with recognised stages of disability acceptance in the literature from reed and osborne (2019), while illustrating buhle’s experiences, from the initial prognosis and diagnosis through the development of resilience and acceptance. the findings highlight financial, cultural and psychosocial challenges faced by buhle in raising a child with asd, contributing nuanced insights to our understanding of this process. a brief profile of buhle buhle is a 39-year-old mother of two living in an underserved community in soweto, johannesburg. her older child, phatie, is 13 years old and has asd. buhle lives with her diabetic mother and also manages her own diabetes as well. after losing her permanent job following phatie’s birth, buhle now depends on part-time work to support her family. the household income is further supported by government grants: an old-age grant for buhle’s mother and a disability grant for phatie, both providing vital financial assistance for the family. navigating the initial trauma of prognosis and diagnosis buhle’s current life experiences stem from a series of traumatic events surrounding phatie’s birth and diagnosis. buhle experienced significant psychological shock and stress during the prognosis and diagnosis, compounded by medical complications during pregnancy and birth that led to her diabetes diagnosis. the initial prognosis was psychologically devastating, and she had to resign from her job. she also highlighted that the diagnosis had something to do with cultural factors. the following are her sentiments: ‘i had a complicated pregnancy, which resulted in me being in high care. i was told that i need to proceed with the c-section labour as i lost water in the 7 month of pregnancy. i was diagnosed with diabetes while i was pregnant. you know, we tend to ignore such issues, and we think it has something to do with cultural things when the child is diagnosed with such conditions … my baby was not diagnosed immediately after birth, but i was told that she wasn’t going to manage to function well. she spent two weeks in the icu. when they discharged her, they told me that my child was blind. so, i was told to go for therapy, yoh! she was seen by many specialists … occupational therapy … ah, i did a lot of people. they told me that my baby was going to be a potato coach [sic], if you understand … she was a child who was not going to do anything. she will struggle to walk and talk … so, because i was working at that time, i had to resign, so that i could take care of her accordingly. i was not supposed to put her on my back, as we african women carry our babies. i had to handle her with care because of her fragile bones. so, along the way, she developed, and she started to sit. she was premature, remember. her eyesight was restored. i can’t tell when her eyesight was restored, but it was during the therapy processes and sessions. it was the first thing she recovered from.’ from her narrations, buhle was not well informed on the nature and characteristics of asd. when she goes for appointments to meet specialists, she avoids asking a lot of questions because of long queues at the public hospitals: ‘… so, it goes with levels, right? i was told she is at level 3. now please don’t get me wrong, am afraid to speak to specialists during appointments, because i wouldn’t want to take their time because there will be a long queue outside at the hospitals … and sometimes i feel you know autistic children become so unsettled in a queue so am very grateful for this opportunity to ask questions freely …’ building a network of understanding her journey to establish psychosocial support was marked by limited family support, cultural misattributions and a single friendship as a cornerstone: ‘to tell the truth, i had only one person in my life at that time, my childhood friend. but i’m not sure if she was supportive, or maybe she was just intrigued by the experience i went through. maybe she had no choice but to support me. she had no children at that time, but she was my backbone. she would check up on me, my well-being.’ ‘so, when it comes to family, everybody was afraid. you know i cannot blame them, because when such things happen in a family, no one knows how to assist. so, they would assume that it’s a cultural thing, and i had to present the child to her father’s family. you know they will come up with all those explanations. but i would just tell them, only god knows about this. i didn’t get the support from them; it’s not like i blame them, i do understand them. so, i experienced all this with the child i could have terminated, you know … because of complications during pregnancy.’ in time, she secured backing from her family and community, largely attributable to her proactive efforts in involving the community in her child’s life. she made efforts to connect her daughter with neighbours and host social gatherings to facilitate interactions with other local children. this engaged approach shifted community attitudes and established a supportive social atmosphere for her daughter. additionally, she regularly attends meetings and educational forums focused on asd, showcasing her persistent commitment to education and advocacy: ‘so, when it comes to the community, they only knew about my child when she started to walk. i made a huge birthday party for her, of course, i am not a birthday party person. but i had to do it because i was celebrating her life and achieving milestones. i never thought she was going to walk. she went to a mainstream preschool. i had to explain to the school that my child has a condition. so, she started to walk when she was in pre-school. so, it was a huge thing for me. so, at the party, i narrated my journey to the community so that they would understand my celebration.’ ‘i try to engage the community so much. i take all the kids around my area, ask permission from their parents, and we go play. i organise kids’ functions and ask the parents to contribute. this will make other kids understand my child.’ ‘… but i am learning, everywhere, where there is autism am there everywhere. i am willing to learn. even while i was working, during children’s day, they would invite an occupational therapist to inform us about autism, even though i am the only one with an autistic child. i am learning …’ managing resources without shared responsibilities it has been observed that buhle’s pregnancy and the subsequent birth affected her ability to maintain full-time employment, later leading her to forfeit her career to care for her child. as a single parent, she is tasked with managing all responsibilities independently. she utilises public resources to aid in supporting her child and participates in various part-time employment opportunities: ‘i must handle all my own; the father is not in the picture. you know what, i also thank the therapists and doctors … they assisted me in receiving the disability grant, even though i was working at that time … but now i am no longer working full-time, i do part-time jobs here and there.’ ‘my baby is enrolled at a special government school, and i do not pay fees. i only pay for her transport. at her school, the occupational therapists are there, and nurses are there for support.’ transforming challenge into empowerment her development of resilience and acceptance is evident through celebration of her daughter’s developmental milestones, continuous learning, recognition of parental acceptance as key, providing a holistic approach to the child’s development and breaking cultural taboos. ‘sehole ho ‘ma-sona, se setle’: this is a sesotho proverb meaning that a child with a disability is beautiful in his or her mother’s eyes (sefotho 2024). as she was narrating stories about her daughter, one could see a glow and acceptance in her eyes. she is driven by the need to make people understand the nature and characteristics of her daughter’s condition and accommodate her: ‘yeah, i am a mother; i must be strong for her. i had to inform my community to understand and accept my child. so, they interact with her so well. so, i don’t have a problem if she is playing outside, because i know she is safe. everyone knows about her. they help her, even crossing the road. they assist.’ ‘… in my community, i have made them aware of my child because she is very friendly and they didn’t understand things like that … so now in my street, every house knows her and when she knocks, they now accommodate her.’ ‘you know it starts with you as a parent. as soon as you accept the situation. better for the child. you will manage to tell the truth. you know these conditions are taboo to talk about. but if you seek help and support for the child, it will be fine. all children have a disability. it’s about you as a parent to understand the child’s emotions and needs. i know her, i just must control her unwanted behaviour, her anger. i know what triggers her happiness. you just learn your child.’ ‘so, i started to understand. as you see me at these meetings at the centre, i am trying to learn more about the condition so i can support her better … me and her talk about everything … even about her reproductive health … she has started her monthly periods now … which means she is normal. i do my best to make her happy.’ discussion four narrative themes emerged from the study: navigating the initial trauma of prognosis and diagnosis, building a network of understanding, managing resources without shared responsibilities, and transforming challenge to empowerment. the results present the complex experiences of adaptation and resilience experienced by buhle, a single mother raising a daughter with asd in a context where asd and her social status are often misunderstood and stigmatised. these findings align with the conceptual framework of the study, which merges neurodiversity and resilience perspectives. the conceptualisation of disability has evolved from a medical model of ‘impairment’ to a social model that recognises environmental factors, with neurodiversity representing a contemporary approach that values neurological variations as natural developmental paths. despite significant challenges such as her health conditions, cultural and societal perceptions on asd and on being a single mother, and economic and financial struggles, she proactively develops strategies to access resources, build community support and provide quality care for her child. this demonstrates the resilience theory component of the study’s conceptual framework, which examines how individuals adjust and flourish despite adversity by developing psychological assets and coping strategies. her experience suggests that the experiences of mothers raising children with asd are not only portraying them as vulnerable and passive recipients of life struggles, as shown in most research studies, but also as strong individuals who strive towards acceptance and empowerment. the process of diagnosing asd is commonly characterised by its long duration, high costs, and significant stress (manono & clasquin-johnson 2023). perlman and howe (2022) explain that the prognosis and diagnosis phases are characterised by confusion, feelings of self-blame and severe stress. cultural contexts may intensify these challenges (papadopoulos 2021). aderinto et al. (2023) argue that in african contexts, the diagnosis of asd is viewed as a punishment or curse. autism spectrum disorder is viewed as taboo and an issue which cannot be discussed in public spaces. hence, mothers in such a situation go through mental struggles full of self-blame and feelings of being unfit for motherhood. sadiki (2023) purports that parenting a child with conditions such as asd adversely impacts one’s well-being because of societal stereotypes, prejudices, stigma, psychological health struggles, economic struggles and a lack of family support. the situation is further worsened by the status of being a single mother. being a single mother results from a variety of life circumstances and influences, including the death of a spouse, divorce, unplanned pregnancies, broken promises or the choice of the mother to raise a child as a single parent (jacobs & andrews 2021). however, in an african context, marriage and motherhood are still ascribed adult statuses to women and provide a source of prestige (ntoimo & mutanda 2021). single-mothered families are often viewed through a ‘deficit’ perspective (jacobs & andrews 2021). dor (2021) argues that a single mother is frequently perceived as unhappier, deviant, troubled, and lacking in effective child-rearing capabilities and unable to maintain a family structure. thus, bearing a ‘fatherless’ child with asd is given spiritual explanations that the ancestors are not happy; hence, the mother is cursed, or the ancestors of the child are not happy, as the child has not been introduced to the father’s family. the mother may also feel overwhelmed by the demands of meeting financial obligations, maintaining the household and working (baluyot et al. 2023). raising a neurodivergent child can affect the career paths of a mother. the need for intensive and special care for the child may disrupt the parent’s career and full-time employment (ozdemir & koç 2023), resulting in opting for selfor part-time employment (baluyot et al. 2023). however, such work options always come with challenges to meet most financial obligations, and in countries such as zimbabwe, where there are limited public social grants and adequate free services to cushion individuals from such economic challenges, single mothers in such contexts are in dire situations (matsai & raniga 2021). fortunately, the social grant system in south africa supports individuals in need of social and economic support (chagunda 2019). this support is in the form of cash, such as the care dependency grant, child support grant, or disability grant. the support can also be in the form of free access to education and health services for children. this helps cushion single mothers who might face financial challenges in raising their children. in the context of interlinked challenges faced by single mothers, it takes resilient traits to overcome such life circumstances and accept that neurodiverse conditions are natural variations rather than viewing them as a deficit that needs to be fixed (sharma, chauhan & gupta 2025) or a curse. resilience is commonly understood as a dynamic process that facilitates positive adaptation to the environment. this concept includes the collective influence of personal attitudes, beliefs, and skills, which enable individuals to achieve success when confronted with adversity (ghanouni & eves 2023). buhle develops resilience over time, transitioning from deficit and challenge-focused to positivity and acceptance. this transition enabled her to handle parental obligations financially and initiate the involvement of society in raising her child. societal stigma on disabilities stems from limited understanding or fear of differences (olasehinde 2024). however, it takes positive resilience for a mother to bridge the gap between her and society through building social networks and educating the community about such conditions. this creates a supportive and welcoming social structure for the child. social networks refer to relationships and connections individuals have with family, friends, community, healthcare providers and community organisations (teslim 2024). adopting proactive strategies fosters resilience among mothers, enhancing their capacity to adapt to and manage overwhelming demands of care giving and support. social networks provide various forms of support such as emotional comfort, practical help, and access to information and resources (teslim 2024). much of the existing literature regarding mothers’ experiences in caring for and supporting children with asd tends to emphasise the adverse effects, such as caregiving burden, unmet needs, negative emotions related to their child, depression, anger, fatigue, and insufficient social support. this ‘deficit’ or ‘misery’ narrative, as described by van der mark et al. (2019), may inadvertently create a sense of vulnerability and victimisation, which simplifies the complex realities of motherhood. such a viewpoint obscures the resilience and acceptance which other mothers demonstrate. in some cases, mothers have bravely transitioned from the phases of prognosis and diagnosis to a position of empowerment and advocacy, actively reconstructing their identities as resourceful agents rather than passive victims of adversity. they are instrumental in creating meaning and establishing supportive communities amid challenging circumstances. study limitations this study has a limitation that must be acknowledged. the study focused on a single mother’s experience; therefore, these findings cannot be generalised to represent all single mothers raising children with asd in south africa. the participant’s level of education, race, access to resources and personal support networks may have influenced her journey in ways that might not apply to all single mothers. cultural contexts, socioeconomic status and individual resilience factors vary across different communities. conclusion and recommendations this research adds to the expanding literature that shifts focus from deficit narratives to emphasise the resilience and acceptance cultivated by some single mothers who are raising children with asd. the findings reveal that, despite facing significant hurdles, including health complications, cultural stigma, financial difficulties and insufficient support networks, such mothers develop exceptional adaptive abilities and transform their challenges into empowering experiences. the south african government is also commended for its provision of social and economic assistance through social grants, as well as for ensuring free access to educational and healthcare services. such services act as a buffer for those who require support. however, we advocate for structural improvements within the healthcare system to alleviate the prolonged wait times that currently detract from the quality of care. the issue of lengthy queues hampers the effectiveness of interactions between professionals and clients, as some clients may refrain from asking essential questions because of the presence of others waiting. by increasing healthcare staffing and utilising technology for virtual consultations, the client experience could be transformed from hurried interactions to more substantial engagements. furthermore, there is a need to establish more community-based support groups for mothers of neurodivergent children. these groups could also participate in campaigns aimed at combating the stigmatisation of neurodevelopmental conditions and addressing the social status of various groups of women within communities. for future research, we suggest conducting longitudinal studies that monitor the development of resilience among diverse groups of mothers who care for and support children with such conditions across various socio-economic and cultural backgrounds. acknowledgements we would like to acknowledge the contributions of the former co-director of the centre for neurodiversity, prof boitumelo molebogeng diale, whose dedication played a pivotal role in fostering a conducive environment for the successful implementation of projects at the centre. our sincere gratitude also goes to the staff of the educational psychology department at the university of johannesburg for their unwavering support in the establishment and growth of the centre for neurodiversity. we wish to further express our gratitude to the participants of the study. we would like to acknowledge the valuable contributions from parents and professionals who care and support autistic children on a daily basis. the authors also extend their sincere appreciation to representatives from the south african social security agency (sassa) and the south africa revenue service (sars) for their impactful presentations on government financial support for individuals in need of support. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions n.n.n.-c., m.m.s. and n.a. organised and conducted the research study. n.n.n.-c. wrote the first draft. m.m.s. supervised, reviewed and edited the final draft. n.a. reviewed and edited the final draft. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data for this study are available from the corresponding author, n.n.n.-c., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and 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‘neurodiversity framework: model, tenets, and critiques’, in g. bennett & e. goodall (eds.), the palgrave encyclopedia of disability, pp. 1–6, springer nature switzerland, cham. william, f.k.a., 2024, ‘interpretivism or constructivism: navigating research paradigms in social science research’, international journal of research publications 143(1), 134–138. https://doi.org/10.47119/ijrp1001431220246122 abstract introduction research methods and design results themes policy discourse discussion conclusion acknowledgements references about the author(s) mashudu r. mphohoni department of occupational therapy, school of health care sciences, sefako makhatho health sciences university, pretoria, south africa martha geiger department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa surona visagie department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa mashudu manafe department of human nutrition and dietetics, school of healthcare sciences, sefako makgatho health sciences university, pretoria, south africa citation mphohoni, m.r., geiger, m., visagie, s. & manafe, m., 2024, ‘staff perception on including students with physical disabilities at a south african university’, african journal of disability 13(0), a1347. https://doi.org/10.4102/ajod.v13i0.1347 research project registration: project number: 7386 original research staff perception on including students with physical disabilities at a south african university mashudu r. mphohoni, martha geiger, surona visagie, mashudu manafe received: 05 oct. 2023; accepted: 14 feb. 2024; published: 15 mar. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: international and local policy frameworks on disability promote inclusive higher education practices for students with disabilities (swd). however, the actual application of these frameworks concerning students with physical disabilities (swpd) in any school of health care sciences (shcs) is uncertain in south african universities. objectives: this study aimed to explore the perceptions of academic and admission staff on the inclusion of swpd in shcs at a south african university. the study was carried out at a university of health sciences in south africa. method: a qualitative study in which respondents (n = 12) were interviewed in depth about their perceptions on the inclusion of swpd in the shcs. thematic analysis was used in the data assessment. results: the results revealed three main themes: policy discourse, environmental effects on inclusion and swpd enrolment. respondents reported the lack of a disability inclusion policy and disability unit to support swd in general. the respondents also noted that there were environmental challenges that could potentially affect the inclusion of swpd in shcs study programmes. respondents also indicated that there was no swpd enrolment as the university’s current inclusion and/or quota system does not include swd. conclusion: the findings of the study showed a lack of disability inclusion policy, environmental challenges and lack of swpd enrolment. based on the study findings, it can be concluded that inclusion of swpd at this university may be negatively influenced. contribution: the study findings contribute to the field of disability and the inclusion of swpd in higher education institutions (heis). keywords: students with physical disabilities; inclusive higher education practises; health care sciences; inclusion policy; disability unit; swpd enrollment. introduction the implementation of inclusive higher education remains poor in higher education institutions (heis), and the actual enrolment figures for students with disabilities (swd) are generally low (under 1% of students enrolled) (department of higher education [dhet], 2018). in an overview of student demographics at eight medical schools in south africa, the authors of van der merwe et al. (2016) reported on race and gender, but not disability, despite having selection policies and practices for undergraduate health sciences study programmes that aim to redress and achieve student diversity. the wits disability rights unit (dru) report shows that a total percentage of swd in the health sciences faculty was 2.2% (wits dru 2022). however, there is a dearth of literature in relation to enrolment statistics in health sciences faculties. it is assumed that excluding disability could be the reason for the under-representation of swd in medical schools and health sciences faculties, and this could negatively influence the recruitment and selection of students with physical disabilities (swpd) in the school of health care sciences (shcs). an enabling environment with accessible buildings like the lecture halls or theatres, libraries and toilets as well as modes of transport is important to promote the smooth integration of swpd into health sciences study programmes (chiwandire & vincent, 2017; moodley & mchunu, 2019). although some accessibility improvements were realised globally, ntombela (2013) noted that many south african universities are still disabling as they consist of grassy and uneven pathways and inaccessible buildings, where swpd rely on others for access. physical access restrictions remain the most crucial challenge experienced by swpd in heis (engelbrecht & de beer, 2014; moriña, 2017). chiwandire and vincent (2017) added that poorly designed buildings physically exclude swpd from participating in higher education. therefore, the physical environment should allow for the accommodation of swpd. according to south africa’s education white paper 6: special needs education (department of education [doe], 2001), curricula in most institutions create the most significant barrier to learning and inclusion for swpd. the authors, bunbury (2018) and dalton et al. (2019), suggested that heis should adopt an inclusive curriculum designed according to inclusive models that minimise the hindrance to learning and participation by swpd. as highlighted by rankin et al. (2010), those professional study programmes in which curricula consist of placement components to ensure that students are able to demonstrate practice competency regardless of their impairment or disability present the greatest barriers, e.g. clinical placement requirements in health sciences study programmes. authors such as rankin et al. (2010), bialocerkowski et al. (2013) and moodley and mchunu, (2019) criticised the clinical component requirements as they are designed as a ‘one size fits all’ model or the ‘fitness to practice’ concept for able-bodied students without possible accommodations for swpd. contrary to findings by mayat and amosun (2011) that showed that academic staff were willing to admit and accommodate swpd, some faculty members in heis still display negative attitudes towards swpd (engelbrecht & de beer, 2014; moriña, 2017). ntombela (2013) added that swpd still experiences exclusion based on other peoples’ perceptions as they are viewed as people who need help. ntombela (2013) was of the opinion that negative attitudes towards swd in general have continued to have an impact on inclusive education initiatives by those who want transformational changes. it is critical for heis to create awareness among staff members on the diversity of the student population to achieve or realise transformational changes (joubert & martins, 2013). tillman et al. (2015) postulated that it is necessary to have positive attitudes and increase the exposure of historically under-represented people like those with disabilities to health sciences study programmes if their access to those careers is to be realised. this means that the recruitment drive in communities should target schools and organisations for people with disabilities (pwd) to make them aware of and develop an interest in health sciences careers. tillman et al. (2015) asserted that expanding the representation of swpd in health sciences study careers is possible, thus increasing diverse enrolment. one of the gaps identified in the literature includes the reported lower rates of admission of students with physical disabilities in most heis. health care sciences consist of different rehabilitation groups with different functions. including swpd in health care sciences groups will ensure a diverse workforce that will enable patient-centredness in the treatment of people with disabilities (meeks & moreland, 2021). in addition, innovative ideas, including the use of technology, can be explored and implemented to make individuals with disabilities part of the health care system. there is a dearth of literature on the inclusion of swpd, and the findings of this study will add value to the existing literature, influencing positive perception on the inclusion of swpd. therefore, the purpose of this study was to explore the perceptions of academic and admission personnel about the inclusion of swpd in the shcs of a south african university. research methods and design study design the study used a qualitative descriptive study design to describe the perceptions of academic and admission personnel involved in the selection and admission of students regarding the inclusion of swpd in the shcs study programmes. setting the study was carried out at a health sciences university in south africa that consists of the schools of medicine, pharmacy, health care sciences, oral health sciences, as well as the school of science and technology. study population and sampling strategy the study used purposeful, nonprobability sampling in which respondents from the shcs and central admission and enrolment departments were included by virtue of their expertise in student selection matters (crossman, 2020). the following departments were included: occupational therapy (ot), physiotherapy (pt), speech language pathology and audiology (slpa), human nutrition and dietetics (hnd), nursing and all administrative staff members from the central admission and enrolment department were selected to be part of the sample. the shcs and the central admission and enrolment departments were selected because they comprise departments involved in the rehabilitation of pwd and the selection of students, respectively. the researcher approached the departments individually and provided information about the research. each head of department was requested to relay the information to their staff members about the research, and the names of those who were willing to participate in the study were communicated to the researcher. thereafter, respondents were approached by the researcher to form part of the study sample. the recruitment process took 1 month. the number of individuals who volunteered to participate dictated when recruitment into the study ceased. when recruitment ceased, there were 12 respondents, which formed the study sample size. data collection a semi-structured interview schedule was used to collect data. the interviews were recorded. data were collected over 2 months, from november 2018 to december 2018. the interviews were conducted in english and lasted about 30 min. the interviews were conducted privately at a place convenient for each participant within the research setting. the researcher made sure that all aspects of the research study were thoroughly described. direct quotes from the interviews were used to present the findings. trustworthiness to ensure trustworthiness, the author read the transcripts multiple times to ensure understanding of the data was maintained. a digital recorder was used to ensure the rigour. peer debriefing sessions were held between the author and coauthors during the analysis to agree on the study’s data and findings. data analysis the audio-recorded interviews were transcribed verbatim. a list of codes and definitions was kept, allowing researchers to track how codes are used to make sense of the data. to become familiar with the data, the researcher read the transcripts carefully and repeatedly. thematic analysis was carried out by identifying, analysing and reporting patterns (themes) within the data. the responses were further analysed using inductive techniques by which relevant responses relating to the inclusion of swpd were coded from the data. initial codes were generated by coding data related to practices, and similar codes were grouped into themes and subthemes for interpretation. the results were then discussed in coded themes and subthemes of the topic under discussion. finally, the themes and findings were presented through a narrative with data quotes. ethical considerations the study was carried out according to the declaration of helsinki and was approved by the stellenbosch university health research ethics committee. the approval study number is ref: # s18/05/114. the researcher provided the respondents with the information leaflet and the informed consent form. all respondents gave their informed consent before participating in the study. results twelve respondents comprised the sample of the study. the sociodemographic data were used to describe the sample characteristics and did not necessarily influence their perceptions. most of the respondents were females (n = 10) and most of the respondents (n = 8) had working experience of 1–10 years. respondents were between 30 years and 65 years (table 1). table 1: sociodemographic characteristics of the respondents (n = 12). themes three themes emerged from the data: policy discourse, environmental effects on inclusion and enrolment of swpd. details of the themes are shown in table 2. table 2: themes and sub-themes. policy discourse disability inclusion policy the findings indicated that the respondents were unaware of any policy that addresses the inclusion of swd in general at this university. ‘…to my knowledge, we do not have a policy on inclusive higher education …, so i have not seen a policy on disability yet.’ (participant 4) ‘i am not aware of the current policies regarding inclusive higher education in this university.’ (participant 2) one respondent also highlighted the impact that not having a disability policy has on the handling admission issues relating to swd in general: ‘a year or two ago there was a deaf girl whose mom was phoning me and emailing me … nobody was prepared to talk to them. i know she wanted to do medicine … but nobody could help me and i really tried. therefore, there was no written document [policy] to give guidance. i really tried to make appointments with the dean of that school and nothing happened; they could not even have an interview with that girl and her mom, and they really wanted to talk. and that was very difficult for me because i feel everyone needs a chance … even just the chance to them talk to and explain to them.’ (participant 8) disability unit or office furthermore, the findings indicated that there was no disability structure, such as a disability unit or office, to support swd in general: ‘this university has no disability desk or unit and has not embraced disability in terms of students and staff.’ (participant 1) environmental factors physical access the respondents indicated that the physical campus environment (lecture halls, libraries, laboratories, kitchens, walking paths and transport) is not conducive to inclusion in terms of access and mobility. although the clinical placement areas or sites (hospitals, clinics, old age homes and special schools) should be accessible, respondents highlighted that they are not accommodating or user-friendly to people with mobility problems: ‘the challenge we have now is the accessibility of the therapy rooms, test rooms, lecture rooms and things like that because the university has not designed the university to accommodate swpd.’ (participant 1) ‘the lecture halls and the library can be a challenge … clinical placement areas … is a challenge. transportation to a placement area … is also a problem if the transport cannot accommodate them.’ (participant 5) clinical curriculum requirements the respondents were of the opinion that swpd might not be unable to meet the clinical demands or requirements of the curriculum to provide safe and ethical services to patients. these requirements are part of the minimum training standards set out by the health professions council of south africa (hpcsa): ‘as a student, you have to be trained in all aspects of rehabilitation … and that is where the difficulty lies. … if a physically disabled person cannot perform, say, for instance, neuro rehabilitation, issuing them with a certificate that says: “i have graduated as a therapist”; it is unfair and unethical to do so ….’ (participant 3) ‘wheelchair users can have serious physical problems when they have to do evaluations and measure a patient who is upright …’ (participant 5) ‘in terms of curriculum, the barrier would be the clinical requirements because we expect them to perform physical conditions, where they have to perform transfers and treat patients on standing frames. we had a wheelchair-bound student whose hands could not straighten out … he would not be able to meet the requirements from second year … we tried to refer him to a programme … but he refused … it took us a year to get that student off to another programme on another campus.’ (participant 12) attitudes the respondents noted that people’s attitudes could affect inclusion: ‘i think … we still look at pwd as people who want our service, not as people who can be our peers …’ (participant 1) ‘so there are many barriers …’ having the stigma of being different from the rest of the students.’ (participant 7) ‘… we normally see disabled people differently and we don’t treat them like normal people … the level of awareness … from peers, is not enough.’ (participant 9) ‘i think attitudinal barriers can play a big role in making sure they are not maybe included, … we all have our prejudices and i think we pre-judge and think these ones are not going to make it before we even give them a chance.’ (participant 10) however, some respondents reported that it could be possible to include swpd with reasonable accommodations to facilitate their inclusion at this university despite the above barriers: ‘… we should include them. but then we should keep in mind how we can accommodate these students in our departments and in the clinical facilities where we train them off campus.’ (participant 4) ‘… i believe that students with physical disabilities should be admitted. … we can find means and ways of training them differently … without compromising the requirements for the main degree.’ (participant 10) respondents with a positive attitude towards inclusion hinted that the response towards inclusion at this university could be reactive: ‘… our university is reactive and they are not proactive. if a student becomes physically disabled, then that they can be reactive and implement things to help the student …, but we are not proactive, so we wait for that day … then we can modify the environment to include pwd.’ (participant 1) ‘… the only time we will change is when we actually get a swpd. so, currently we don’t see the need to modify our buildings …, but when we have someone disabled coming, it will be the trigger to say that now we need some adjustments.’ (participant 4) enrolment of students with physical disabilities recruitment according to the respondents, potential applicants with disabilities are not recruited to apply for admission to this university. they pointed out that the marketing of health sciences programmes was not extended to pwd: ‘… we usually go out and market the professions in schools and the communities. i don’t think we are more open to going to schools with physical disabilities to make them aware of our degrees.’ (participant 1) ‘i do not think we have got enough awareness in the disability community about our programmes as a whole …’ (participant 12) selection respondents noted that the final selection criteria or the quota system only addressed race, gender, students with prior degrees and foreign students, but that this criterion did not address disability: ‘… i know for sure that we do not look at people with disabilities. we look at race … gender. the application form has your quota … so many percentages of women and men … different races, but it does not say anything about people with disabilities.’ (participant 1) ‘… our inclusion criteria or practises we are looking at … quota; … regarding race, gender, and foreign nationals … we do not look at people with disabilities.’ (participant 4) admission some of the respondents pointed out that they were not aware of any swpd enrolled at the study site: ‘i don’t think we have any inclusive practises, i have been here since 2002 … i have never seen a student who had physical disability admitted in our programme.’ (participant 1) ‘in the 5 years that i have been here; i have not seen a student with a physical disability admitted into the programme.’ (participant 4) however, other respondents had experiences with swpd in the past, who later succeeded in their studies and graduated: ‘i had the experience of a cp diplegic student some years back. he graduated … now he is a very successful therapist.’ (participant 3) ‘we had one student here this year who had severe scoliosis … a couple of things had to be adapted for him … he was included in all other activities and now he is a graduate.’ (participant 7) the respondents were aware of a possibility that swd could be admitted to the study site without disclosing their disability status, perhaps for fear of being discriminated against: ‘my experience is that students do not disclose, even when the university application form requires you to disclose. i was on a senate committee for people with disabilities … i was given a mandate to do an audit of how many students live with disabilities. i went to the student administrator and they said: “nobody would disclose” because they are afraid they would be discriminated and not allowed to continue. i said how do i know and they said “no student would write that on their file” …’ (participant 12) discussion the study aimed to qualitatively explore the perceptions of academic and admission staff on the inclusion of swpd in shcs at a south african university. most of the respondents were women. however, age and gender did not influence on the perceptions related to the inclusion of swpd in a hei. the work experience of the respondents contributed to their perception about the subject under investigation. the respondents in this study believed that the university had no disability inclusion policy and no disability office or unit to support swd. this is so despite the availability of the international and local policy framework on disability inclusion in heis such as uncrpd (un, 2007), wprpd (dsd, 2016) and the strategic policy framework on the pset system (dhet, 2018). the idea that the university has no disability inclusion policy and disability office or unit to support swd in general is contrary to the intentions of the south african dhet to formulate, implement and monitor disability-related policies and guidelines in pset institutions (dhet, 2018). however, it should be noted that there is a paucity of studies on the inclusion of students with disabilities in general in medical and health care sciences study programmes, especially in developing countries like south africa. the findings of the study are contrary to what the authors of ramaahlo et al. (2018) reported that each hei in south africa is required to have its disability unit to promote and support inclusive higher education. furthermore, ntombela (2013) is of the view that a disability office in an institution is meant to support swpd who experience barriers to learning and development. without a disability policy to rectify past imbalances, inclusion efforts may not be achieved. furthermore, without a disability structure, institutions lack procedures or directives to include or support swpd. the implication, therefore, is that those who work in the admission department may find it difficult to handle queries related to the inclusion of swpd. the respondents identified environmental issues that could potentially affect the inclusion of swpd in the shcs study programmes. these issues were related to physical access, clinical curriculum requirements and attitudes. due to physical access constraints or poorly designed physical environments, swpd are still excluded from participating in higher education (chiwandire & vincent, 2017; engelbrecht & de beer, 2014). the authors chiwandire and vincent (2017) stressed that accessibility of buildings as well as improvement in modes of transportation should be prioritised to facilitate participation of swpd in learning and related activities. as highlighted by rankin et al. (2010), participation in health care programmes by swpd was found to pose considerable barriers due to its professional clinical placement components, where students are required to demonstrate clinical practice competency. moodley and mchunu (2019) and bialocerkowski et al. (2013) agreed and highlighted that the curricula of health sciences programmes do not promote equal access due to the design of clinical components as a ‘one size fits all’ model concept. the findings show that people’s attitudes pose a significant challenge that could affect inclusion. the findings are in line with the findings of ntombela (2013), who reported that swpd still experiences exclusion based on the perception of others due to their physical conditions, as people who need help. however, respondents who showed a positive attitude believe that it is possible to include swpd with reasonable accommodations to facilitate their inclusion at this university. in a case study report on a swpd in a professional physiotherapy education programme with functional limitations in standing, sitting, lifting and bending, francis et al. (2007) noted that if special equipment is provided, students can participate in classroom and clinical education activities. similarly, jackson et al. (2011) recommended the provision of special equipment, extra time for tasks or special positioning as part of accommodating swpd in health sciences. some of the study respondents indicated that they had no experience or awareness of swpd, while other respondents did experience swpd in the past. there is the possibility that there were no swpd enrolled in the shcs at the study site at the time of the study. this is in line with the enrolment figures of swd in south african universities, which were less than 1% of the total enrolled students enrolled (dhet, 2018). furthermore, having no enrolment in swpd is contrary to the recommendations of international and local policy initiatives to increase enrolment in swpd enrolment in higher education (dsd, 2016; un, 2007). the study findings revealed that the respondents are of the opinion that potential swpd might not be aware of the study programmes that the university offers, as they are not recruited to apply. moodley and mchunu (2019) confirmed this finding when they cited a lack of swpd recruitment in most nursing education institutions (nei) than lack of internal policy guidelines. authors such as bialocerkowski et al. (2013) view the lack of recruitment of swpd as an element of discrimination, especially when there could be evidence that they were not actively recruited or given information. therefore, access to this career in health sciences by swpd is not being promoted. however, tillman et al. (2015) asserted that expanding the representation of swpd in health care sciences careers is possible if there is an increase in diverse enrolment. essentially, the marketing of the study programmes should be extended to the disabled community to realise their inclusion in heis. the respondents noted that the quota system for student selection does not include those with disabilities. however, the study findings revealed that other additional inclusion criteria are based on gender and other variables, except disability, as noted by the respondents. just like recruitment practices, not including the general population of swd in the selection criteria means that inclusive higher education can also be largely seen as discrimination against swpd (bialocerkowski et al., 2013). the study findings suggest that there may be swd admitted to the study site who did not disclose their disability status. these findings are consistent with those reported by moodley and mchunu (2019) in which some swd did not disclose their disabilities for fear of being excluded from the nursing programme. similarly, those with a negative experience of being excluded from a study programme after revealing their disability might be reluctant to disclose their disability fearing that it would place them at a disadvantage (moriña, 2017; lourens & swartz, 2016). in contrast, ndlovu (2019) and moodley and mchunu (2019) at their study sites found no evidence against discrimination of disabled applicants in terms of application procedures, even though the applicants had indicated their disability. a disability inclusion policy is paramount in addressing such issues and should, therefore, explicitly state how prospective swpd will be recruited and selected to ensure representation within the student body population. strengths and limitations the strengths of the study are that new information is presented in the field of disability. while most studies focused on the inclusion of swd in general at heis without specifying the study programmes, this study specified the type of disability in health sciences study programmes. the authors are of the opinion that the findings herein can generate more curiosity into how inclusion of swpd in health sciences study programmes can be done. the limitation of the study is that since a qualitative method of enquiry was used, the findings cannot be generalised as perceptions differ from individual to individual. the study was carried out only in one of the five schools at the university. future studies should include people from other schools who are involved in the selection process. conclusion the study explored and provided information on the perceptions of academic and admission personnel about the inclusion of swpd in the shcs at a south african university. the inaccessibility of a disability inclusion policy at this university could affect the enrolment of swpd. although the inclusion of swpd does occur in some instances, policy, proactive planning around physical spaces and curriculum requirements, as well as harnessing the positive attitudes of staff, can improve inclusion in the study setting. the environment should form the foundation of disability inclusion and should be able to promote the smooth integration of swpd into shcs programmes. once the disability inclusion policy, the enabling environment and enrolment of swpd are in place, a disability office can be established to support swpd at the university. one of the benefits of including students with disabilities is that it may foster empathy and concordance among individuals living with disabilities in terms of addressing health care disparities. thus, the findings of the study will be of great benefit to the dhet to mainstream disability in heis. the findings of the study are critical to the department of social development as custodians of ensuring the rights of people living with disabilities including higher education as a right. acknowledgements the authors would like to acknowledge all those who participated in the study, as well as the institutions that allowed the study. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions m.r.m., m.g., s.v., and m.m. were all involved in designing and writing the study, data collection, data analysis and write-up. funding information this research study did not receive a specific grant from any funding agency in the public, private, commercial or non-profit sectors. data availability the data of this study are available on request from the corresponding author, m.r.m. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible 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state of selection criteria and demographic profile of medical students’, south african medical journal 106(1), 76–81. https://doi.org/10.7196/samj.2016.v106i1.9913 abstract introduction methodology findings discussion conclusion acknowledgements references appendix 1: interview schedule with the person with a disability. about the author(s) victor mckinney department of health and rehabilitation sciences, university of cape town, cape town, south africa seyi l. amosun department of health and rehabilitation sciences, university of cape town, cape town, south africa citation mckinney, v. & amosun, s.l., 2020, ‘impact of lived experiences of people with disabilities in the built environment in south africa’, african journal of disability 9(0), a518. https://doi.org/10.4102/ajod.v9i0.518 original research impact of lived experiences of people with disabilities in the built environment in south africa victor mckinney, seyi l. amosun received: 21 mar. 2018; accepted: 21 may 2020; published: 06 aug. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in spite of legislations and policies to ensure an inclusive society in south africa for the accommodation of people with disabilities, there are reports that they still struggle to move freely within society. objectives: as part of a larger qualitative exploratory study on the preparation of undergraduate civil engineering students in a local university to contribute to the development of an inclusive society, this article seeks to understand the impact of the lived experiences of people with disabilities in their interaction with the built environment. method: four persons with disabilities, considered to be knowledgeable about south african legislations relating to disability, were purposely selected to each share one specific experience whilst interacting with the built environment. the transcribed texts of the interviews were analysed by using the phenomenological–hermeneutic method. results: the participants exhibited strong desires to participate in society. however, the sense of loss of control and independence as they encountered challenges in the built environment changed the euphoria to disempowerment, rejection, anger and despondency. in spite of their experiences, participants expressed a commitment towards overcoming the challenges encountered in the broader interest of people with disabilities. conclusion: a deeper understanding of the impact of the experiences of people with disabilities when they participate within the built environment in south africa revealed a broad spectrum of negative emotions, which may impact the quality of life and well-being of the participants. keywords: people with disabilities; lived experiences; built environment; challenge; south africa. introduction in an attempt to understand the contextual parameters that would impact disability inclusion in south africa, this article explores the lived experiences of some persons with disabilities with regard to inclusion in a built environment that is assumed, based on available government’s documentations, to align with international and national disability-related policies and legislations (department of the presidency [dop] 2013; department of women, children and people with disabilities [dwcpd] 2013). these include the united nations convention on the rights of persons with disabilities (uncrpd) (united nations [un] 2006), and at national level, the integrated national disability strategy (inds) (office of the deputy president [osdp] 1997), the national development plan 2030 (ndp) (dop 2013) and the white paper on the rights of persons with disabilities (wprpd) and its accompanying implementation matrix (department of social development [dsd] 2016). the research presented in this article was part of a larger study, which explored the readiness of undergraduate civil engineering students at a local university in south africa to contribute to the development of an inclusive society that accommodates people with disabilities (mckinney 2016). for the purpose of this article, the definition of the built environment consists of ‘all buildings, spaces, and products that are created or modified by people’ (smit et al. 2016:197). globally, the estimated number of people living with some form of disability is one billion, with approximately 190 million living with severe disabilities (world health organization [who] 2011). in south africa, approximately 10% of the population live with a disability (statistics south africa 2011), although there have been fluctuations in the recorded prevalence (maart et al. 2007; schneider 2009; sing 2012). persons with disabilities represent a fair portion of the world population, and they form ‘a diverse group who share the experience of living with significant limitations in functioning and, as a result, often experience exclusion from full participation in their communities’ (krahn, walker & correa-de-araujo 2015:198). this social exclusion creates painful experiences that have shortand long-term detrimental effects on the well-being of affected individuals (delbosc & currie 2011; klompas & ross 2004; krahn et al. 2015; tobias & mukhopadhyay 2017). it is therefore helpful to understand the experiences of persons with disabilities in their attempt for inclusion in all spheres of the societies they live in (hammel et al. 2015). this will align with the world bank’s goal of building partnerships with the world’s leading disability groups to advance social and economic inclusion (world bank 2016). although there is much discourse on what constitutes an inclusive society, there are few definitions. the world summit for social development in copenhagen in 1995 defined an inclusive society as a ‘society for all in which every individual, each with rights and responsibilities, has an active role to play’ (un 1995). the un (2008) later emphasised that such an inclusive society must be: [b]ased on respect for all human rights and fundamental freedoms, cultural and religious diversity, social justice and the special needs of vulnerable and disadvantaged groups, democratic participation and the rule of law. (p. 8) based on these underlying principles of an inclusive society, the centers for disease control and prevention envisage that disability inclusion entails including people with disabilities in everyday activities and encouraging them to have roles similar to their peers who do not have a disability. this involves more than simply encouraging people; it requires making sure that adequate policies and practices are in effect within a community or organisation. ‘inclusion should lead to increased participation in socially expected life roles and activities’ (centers for disease control and prevention 2016:para. 1). in summary, disability inclusion is conceptualised as a process of identifying, understanding and breaking down the barriers to participation and belonging rather than a fixed state (armstrong, armstrong & spandagou 2011; mattevi et al. 2012). internationally, a wide range of research has covered the experiences of people with disabilities interacting with the built environment. much has focussed on individual impairments such as those with visual, hearing or mobility impairments and their experiences including navigating buildings (legge et al. 2013), travel activities (poria, reichel & brandt 2011), higher education and employment (byrne 2014; kramer 2008) and transport systems (pyer & tucker 2017). more comprehensive studies investigated how people with disabilities perceived the role of the built environment in their participation in various aspects of daily life (hammel et al. 2015). literature categorises the barriers to disability inclusion as attitudinal, environmental and institutional (harpur 2012). for an inclusive society to develop, it is imperative that people with disabilities have access to their environment (un 2006) as this allows for a platform where disability may be celebrated in its diversity, as opposed to being excluded as something different, which is currently a common experience of people with disabilities (clarke et al. 2011; who 2011). with south africa’s transition to democracy in 1994, the constitution held up the promise of a better life for all south africans, raising the aspiration for an inclusive society that accommodates persons with disabilities. the conceptualisation of disability evolved for the better in the country, with the adoption of the social model of disability presented in the uncrpd (harpur 2012). article 9 of the uncrpd specifically calls for the development of an accessible built environment to accommodate people with disabilities (un 2006). however, unfortunately, it seems that not much change is happening on the ground to enhance the inclusion of persons with disabilities (amosun & taukobong 2010; amosun, volmink & rosin 2005; lucas 2012; mayat & amosun 2011). south africa was the second country to ratify the uncrpd and incorporated its comprehensive framework (borg, larsson & östergren 2011; mannan et al. 2012). the uncrpd comprises of 50 articles that outline the protection of rights and dignity of people with disabilities, addressing all aspects of quality of life and their full participation in society. the wprpd that was launched by the president of south africa in 2016 described disability inclusion as follows (dsd 2016): inclusion is regarded as a universal human right and aims at embracing the diversity of all people irrespective of race, gender, disability or any other differences. it is about equal access and opportunities and eliminating discrimination and intolerance for all. it is about a sense of belonging: feeling respected, valued for who you are; feeling a level of supportive energy and commitment from others so that you can best fully participate in society with no restrictions or limitations. inclusion implies a change from an ‘individual change model’ to a ‘system change model’ that emphasises that society has to change to accommodate diversity, i.e. to accommodate all people. this involves a paradigm shift away from the ‘specialness’ of people to the nature of society and its ability to respond to a wide range of individual differences and needs. inclusion is the ultimate objective of mainstreaming. (p. 8) although some countries have enacted and enforced specific antidiscrimination legislations as a step towards ensuring social inclusion (vanhala 2006), south africa does not yet have specific legislation pertaining to the rights of people with disabilities. however, one may find protection for persons with disabilities in core legislative acts such as the constitution (1996) and the promotion of equality and prevention of unfair discrimination act (pepuda) (2000), as well as the commitment of government to the inclusion of people with disabilities as expressed in the ndp (dop 2013). in addition, there are generic policies that are applicable to specific areas of life advocating for the accommodation of people with disabilities (combrinck & van reenen 2011; dube 2005), such as: the code of good practice on the employment of people with disabilities (2002) – which is essentially an implementation guide for employers to facilitate the employment of people with disabilities. sans 10400: the application of the national building regulations, part s: facilities for persons with disabilities (1987, revised 2011), which is deemed to be compliant with the requirements of the national building – regulations and building standards act, 1977 (act no. 103 of 1977) (watermeyer 2014). this policy strives towards the free movement of people with disabilities within the south african built environment. a couple of studies have explored the impact of the built environment on people with disabilities in south africa (adewumi & allopi 2014; maart et al. 2007; napier, coulson & matsebe 2006). in addition, previous research has explored the experiences of people with disabilities within the south african context including community stakeholders’ perspectives on the role of occupational therapy (naidoo, van wyk & joubert 2017), students with disabilities in higher education (chiwandire & vincent 2017; lourens & swartz 2016), economic vulnerability (hanass-hancock et al. 2017) and rehabilitation experiences in rural south africa (visagie & swartz 2016). however, in spite of the assurances in national policies and legislations, there remains a shortage of information on understanding the impact of the lived experiences of persons with disabilities in accessing the built environment. this article sought to document and gain deeper insight into the lived experiences of persons with disabilities in their desire to access and participate in the built environment. methodology the exploratory nature of the larger study required a qualitative research approach. purposive sampling was utilised in selecting four persons with a disability who were considered to be knowledgeable (merriam 1989) about south african legislations relating to disability. the lead author of this manuscript (v.m.) is a person with disability and is aware that all the participants had been involved in the south african disability sector, personally and professionally, over a number of decades. they had worked across the public and civil sector towards increasing awareness, education and training on disability issues. they had also worked extensively with, and sometimes for, the government and other stakeholders in improving domestic disability policy. the four participants manifest three of the four types of disability identified by the who (2008), namely motor or physical disability, visual disability and hearing impairment (table 1). table 1: profile of study participants (n = 4). data collection in-depth, semi-structured interviews were conducted separately with each participant, except one. the interview schedule with the person with a disability for the larger study that explored the readiness of undergraduate civil engineering students to contribute to the development of an inclusive society that accommodates people with disability is provided in appendix 1. responses to question 10 of the interview schedule provided the data for this article. the in-depth format enabled the researcher ‘to explore fully all the factors that underpin participants answers: reasons, feelings, opinions and beliefs’ (legard, keegan & ward 2003:141). the semi-structured format allowed for an interactive interview where the researcher could probe to gain deeper insight and exploration of the participants’ experiences (legard et al. 2003). after some initial questions relating to assessing knowledge about south african policy on disability and accessibility, each participant was asked the following question: ‘could you please describe an experience that you have had within the south african built environment?’ the question was intentionally broad to avoid any possible bias. this question was followed up with prompts such as: ‘could you please describe in greater detail….?’ and ‘could you please explain a bit more about…?’ to get a clear picture and avoid any misunderstanding of the events and the participant’s experience. for the one participant who was not interviewed, he gave permission that related information about his experience could be taken from a newspaper article that was uploaded on his personal blog. follow-up e-mail correspondence between the participant and one of the authors (v.m.) took place whenever clarity was sought, or for further exploration. the open-ended questions posed to each of the participants offered opportunity to also capture a wide range of emotions in their responses. data analysis the audio-recorded interviews were transcribed and analysed, by using the phenomenological–hermeneutic method (davidsen 2013; lindseth & norberg 2004). the method has been widely used to interpret the meanings of lived experiences of individuals in different contexts (angel & buus 2011; cassidy et al. 2011; karlsson, bergbom & forsberg 2012). the method involves three key steps. the first step involves a naive reading, which provides an initial understanding of the data. the text of the interview is read many times ‘in order to allow the text to speak to us … we become touched and moved by it’ (lindseth & norberg 2004:149). the second step involves the structural analyses where meaning units are sought within the text. these meaning units are then condensed (table 2) and abstracted into themes and subthemes (tables 3 and 4). the themes were reflected upon by the researchers to ascertain whether they ‘validate or invalidate the naive understanding’ (lindseth & norberg 2004:150). the third step is referred to as comprehensive understanding, and it entails a summarisation and reflection of all the themes in relation to the context of the study and research question. table 2: meaning units and condensation example (from the experiences of participant d, male, 47 years old). table 3: sub-themes, themes and main theme from the first structural analysis. table 4: sub-themes, themes and main theme from the second structural analysis. the theoretical framework behind the data analysis was predominantly informed by international and domestic policy on disability, specifically article 9 of the uncrpd (un 2006), and strategic pillar 1: removing barriers to access and participation of the wprpd (dsd 2016), respectively. in other words, the theoretical lens investigates the ability of the participants to fully participate in the south african built environment and play an active role in society, the impact on their quality of life, dignity, health and well-being and how their lived experiences related to current policy on disability. ethical consideration permission to carry out the study was granted by the human research ethics committee (hrec) at the university of cape town (ethics approval reference number hrec ref:165/2011). furthermore, all participants signed a consent form in which the purpose of the study and the rights of the participants was outlined. permission was also sought and granted from the participants to record the interviews. all data collected were kept in a secure place to which only the researcher had access. there was no link between the interview data (tapes and transcripts) and any identifying data about the research participants. rigour to ensure trustworthiness, four components, credibility, transferability, dependability and confirmability, were undertaken (guba, lincoln, polit, & hungler in graneheim & lundman 2004). the credibility of the study aimed at avoiding misrepresentation or distortion of the data and was enhanced by prolonged engagement in the field (bitsch 2005) as well as the process of member checking to verify the responses of participants (guba & lincoln 1982). transferability was addressed through use of purposive sampling and thick description that allows for replication by future researchers conducting similar studies (shenton 2004). to uphold dependability, all the research processes were documented in detail and kept as an audit trail (li 2004), which also promotes confirmability (guba & lincoln 1982). confirmability was further enhanced through reflexivity, where the researchers continuously questioned their own predisposition and how this may influence and inform the research (shenton 2004). findings a summary of the experiences of each of the four participants is first presented. participant a is a male quadriplegic paralysed from the shoulders down. he went on a tour to robben island in cape town, south africa, where nelson mandela spent 18 years of his 27-year prison sentence. he was joined by his wife and her family, who were visiting from the uk, as well as his care assistant. most of the tour route was accessible, but he encountered a challenge when trying to get into the cellblocks that housed nelson mandela’s cell. there were stairs in front of the block, and there was no accessible ramp for wheelchair users. consequently, he was stuck outside whilst his wife and her family went into the cellblocks. however, participant a persisted, and with the aid of some of the tour group members, he descended to a lower level using a makeshift ramp made from two metal beams found nearby. once descended, he found that he could access all the cellblocks. participant b is a man with a visual impairment who described the challenges he encountered when using a hotel elevator that used touch-sensitive buttons, as opposed to the more conventional slightly raised, numbered buttons. he got lost using the elevator after inadvertently activating many touch-sensitive buttons at once, thus triggering a host of independent events. as the lift had no audio, he soon had no idea at which levels the elevator was stopping. participant c is a woman, who is hard of hearing, used an express train system in johannesburg, south africa to get from the city centre to the airport to catch a flight back home to cape town. at one of the stations she needed to change trains and could not find the correct platform because of inadequate signage. she was in danger of running late and missing her flight because she struggled to communicate with the security guards as she tried to lip read them but could not because of the bad lighting at the station. in addition, the loud background noise and poor acoustics on the station made it difficult for her to concentrate. participant d is a paraplegic who got the chance to take a weekend trip with his wife and friends on a renowned luxury train in south africa. having been assured that the train was accessible, he bought tickets, which although at a reduced price were still very expensive at approximately zar 10,000 (us$650 or €590). after enjoying a five-star treatment with champagne with his friends before embarking, it became apparent that the train was in fact not accessible for independent wheelchair users like himself. he tried in vain to use the train’s wheelchair (after getting out of his own custom-built one) and manoeuvre around the trains ‘accessible’ cabin set aside for guests who use wheelchairs. the challenges he encountered included being asked by the train staff to walk a few steps to board the train, use the train’s old inadequate wheelchair, stay in an inaccessible cabin and use the train’s butler every time he wanted to get in and out of bed or use the bathroom. eventually, he had to return home alone, saying goodbye to his tearful wife and upset friends whom he persuaded to carry on with the journey so as not to miss the once-in-a-lifetime opportunity. an understanding of the impact of the narrated experiences of the participants is presented in three sequential phases – a naïve understanding, a structural analysis and a comprehensive understanding. the latter is incorporated within the discussion to avoid repetition. naïve understanding a preliminary overall interpretation of the narratives emphasised how the four individuals with disabilities were motivated by the human desire to belong. they commenced their interaction with their environments, having a sense of being participants in society, with an expectation that their needs were catered for because of the legislations that gave hope for an inclusive society. unfortunately, their sense of participation was thwarted by inaccessible environments, which also generated a range of negative emotions and in some cases, a severe decline in well-being. when the environment was accessible, the participants had a heightened sense of belonging and participation. this gave them hope and encouraged them to help make the built environment accessible throughout south africa. structural analysis the first step in the second phase involves developing meaning units in the experiences described by the participants. an example is presented in table 2. the structural analysis phase is divided into two. the first structural thematic analysis covers the meaning of being in this state of despondency presented (table 3). becoming discouraged from not being able to participate for the participants, interacting with the built environment meant developing their sense of belonging in society, being part of a space where they could participate, take an active role and contribute. each one, however, soon encountered challenges to their full participation. in these moments, they experienced frustration with having to deal with inaccessible environments and other people’s assumptions about disability. they also felt that their disability rights were being violated and became deeply discouraged by inadequate and inappropriate facilities: ‘i began to get a sinking feeling with the way that the staff were treating me. each of them trying to push me, even though i each time told them that i prefer to roll myself … and have no handles on my wheelchair for that reason’. (participant d, male, 47 years old) ‘as we got closer to the cellblock building, i saw people walking up the stairs – there was no ramp and i just thought “oh, no – not now, not here, of all places”’. (participant a, male, 42 years old) losing autonomy in the built environment all the participants experienced subtle but critical moments where their sense of independence within the built environment was lost, and their ability to participate further was threatened. participants were forced into a situation where they had to carry on struggling on their own or call on others for assistance. this implied that they would have to explain exactly what they needed and how it had to be done. the participants found it cumbersome and exhausting when dealing with people who were not trained or used to dealing with disability. in some instances, getting the assistance they needed was a challenge in itself, and this exacerbated their sense of disempowerment: ‘i get such a headache – all the background noise makes it harder to hear what people are saying and i have to concentrate all the time. so, i approached the security guard and the moment he started speaking i was having trouble lip-reading … the lighting was bad, the shadows from his cap going right across his mouth, and his accent was thick, so i couldn’t work out what he was saying, and i just wanted to get home and lie down’. (participant c, female, 38 years old) ‘that’s the problem with touch-sensitive (buttons) where you run your finger down lightly over it, a light goes on and the button activates … also, if you’re tactile inclined like me, before you know it you have run your finger over 20 buttons, and then you’re in trouble … because the lift is going up and down like a horse draws and then you’re stuffed. i was in the lift for about 20 minutes waiting for somebody to rescue me, it was late at night and i had just come out of the restaurant’. (participant b, male, 50 years old) being overcome with anger and humiliation in some cases, the participant’s sense of injustice, exclusion and loss of dignity was overwhelming and culminated in an overriding state of anger. these were extremely distressing moments where participants felt they had been thrust into a humiliating position by the inaccessible environment, and all focus and unwanted attention was put on their disability. some also felt ashamed for being the cause of distress to friends and family. ‘so, i reverse down the corridor, and shuffle [along my bottom] off the train, back into my wheelchair … the crowd has reformed, and i squirm in their collective sympathetic looks and comments. they all mean well, but i just need to get out of here. at this stage there are tears rolling down my wife’s face … i am feeling [terrible] for again being the reason for spoiling another nice weekend’. (participant d, male, 47 years old) the participants also experienced a feeling of resentment that those responsible lacked accountabilities regarding their duties towards implementing disability policies. ‘the fact that they don’t read the building regulations is not an excuse – they need to read the damn regulations because it is inexcusable that they just don’t bother’. (participant b, male, 50 years old) feeling despondent and defeated reflecting on the status quo and their constant, daily challenges, the participants developed a deep sense of despair. they had all been disabled for many decades and despite witnessing some improvements regarding accessibility, they felt that overall very little had changed since 1994, when south africa became a democracy. ‘the sad thing is i still cannot move around the city on a normal bus or train – which are pretty obvious forms of transport – so it is difficult not to get despondent about it’. (participant a, male, 42 years old) ‘it makes me feel very disempowered, i mean this is a system that is well over 100 years old and why on earth should a 53-year-old man not to be able to drive a lift for heaven’s sake.’ (participant b, male, 50 years old) in these moments, the participants experienced a sense of being defeated by the environment. they also felt rejected by society and ignored by the government, which intensified their sense of helplessness. ‘you know, you go out and you just want to enjoy yourself and you feel part of something and forget about other stuff like being different – and then a simple thing happens, some little piece of accommodation is missing – and it’s slap bang in your face again and you just feel like giving up’. (participant a, male, 42 years old) ‘society in general does not really understand what people with disabilities go through – not really, because even when you explain something, they default back to access ignorance – and it is wilful ignorance because they do not engage.’ (participant b, male, 50 years old) not only the initial structural analysis indicated that the participants experienced discouragement, anger and despondency, but it also revealed their expressions of a desire to be independent. for that reason, a second analysis was undertaken. the essence of the second phase of structural analysis is comprised of the main theme of being able to play an active role and contribute to society, with the following three themes: having the desire to participate in society; striving for independence in the built environment; and collaborating to improve accessibility (table 4). having the desire to participate the participants expressed an innate desire to be active in society. during these empowering moments they viewed themselves as regular social beings who interacted with the built environment on an everyday basis, whether they were going to work, enjoying a day out or taking a holiday. ‘and here i was on robben island on an accessible bus with a nice big view of everything through the window – it was quite moving, especially spending time at the quarry where mandela and his fellow prisoners had been forced to work’. (participant a, male, 42 years old) ‘so, we booked … and paid. we were really excited about the trip; the train is famous all around the world and having the whole train full of our friends promised to be a once in a lifetime experience’. (participant d, male, 47 years old) the participants had to maintain a constant awareness of their needs and had become mindful of checking out the environment where possible. experience had taught them that places were not always accessible as advertised and often they would phone a venue directly to see if it really was accessible, or they would inspect it upon arrival. these instances helped them maintain as much control as they could over their environment. ‘as soon as i check into a hotel i check out the lift, and if i can drive it myself i will – but if i can’t then, even though it irks me, i will just get a bellhop to help me’. (participant b, male, 50 years old) two of the participants held such a strong desire to participate – and to not feel defeated– that they were prepared to put their health at risk. having come so far in their journey, they wanted to exhaust all the possibilities before throwing in the towel. ‘so … against my wife’s advice, i shuffle (along my bottom) onto the train and lift myself into their narrow wheelchair. ok, at least i am on now…’. (participant d, male, 47 years old) ‘well i was determined. so (my care assistant) and i went around the back to see if there was any other way to get in. there were some steel girders stacked against the wall – they were just long enough to use as ramps to go down to the lower level. so, we called some of the other guys to come and help us – a bit scary because the girders were loose, but i was down and along the passages to nelson mandela’s cell 46664 – another moving experience’. (participant a, male, 42 years old) striving for independence in the built environment the participants stressed that it was not just their ability to be independent that was important. it was also the message that it sent out to other members of society – that people with disabilities could participate, move freely within the built environment and only ask for assistance if it was absolutely necessary. ‘relying on other people – well you get laconic about it – but i don’t enjoy it. you know i worked really, really hard to be independent. i got a white cane and i’ve got a great dog, and i have the means to get around independently, [but] i cannot. [the bellhops] are pretty good but that’s not the point, that misses the point of independence, doesn’t it?’ (participant b, male, 50 years old) ‘so, i carried on for a bit longer and just followed my gut and after a while i saw a sign that went to the right place and was familiar to me – but for a while it was really unpleasant’. (participant c, female, 38 years old) collaborating to improve accessibility all four participants expressed a sense of commitment to help improve accessibility in the south african environment. they had spent a lot of their time and energy, both personally and professionally, towards achieving this, and during these moments they believed they were contributing to the increased participation of people with disabilities in general. they felt they had worked hard, over many years, to achieve a level where they could participate in different aspects of society, such as embarking on higher education and avenues of employment. from their involvement in the disability sector, they also believed that enough structures had been created to ensure accommodation of people with disabilities. ‘considering what the government had pledged – what we have been involved with – i feel i have the right to expect that i can get around on my own because the building regulations require it’. (participant b, male, 50 years old) the participants recognised the importance of creating awareness around disability issues at all levels of society and collaborating with the right people in government and private sectors. they carried a deep sense of responsibility towards this and viewed it as an ongoing process. ‘it calls for more awareness – we have to keep on doing what we’re doing and making people aware and calling government to account’. (participant a, male, 42 years old) ‘i shall write (the luxury train company) a long letter, explaining where they went wrong, and how they need my company’s services to ensure that they comply with their responsibilities as a south african company’. (participant d, male, 47 years old) discussion comprehensive understanding and reflections with an extensive knowledge of international and national disability policies and legislations, coupled with the commitment of government to address disability issues (dop 2013), the participants possibly had a fair and reasonable expectation of inclusion in the south african society to have invested time and resources in the train trip (participant d), in using available and safe transport facility (participant c), in visiting a world-renowned tourist site (participant a) and in using a facility in the built environment to move from one floor to another (participant b). however, the findings showed that the participants were caught within a tension of wanting to play an active role within society, but finding it difficult when they tried to participate. their narrated experiences concurred with previous research that the inclusion of people with disabilities remains a challenge in south african society (amosun & taukobong 2010; amosun et al. 2005; mayat & amosun 2011), and particularly within the built environment (adewumi & allopi 2014; lucas 2012; maart et al. 2007; napier et al. 2006). these challenges had a profoundly negative impact on their ability to play an active role in society and were detrimental to their quality of life (hammel et al. 2015; un 2006). the wprpd (dsd 2016) emphasises that accessible infrastructure lies at the core of the right to human dignity, equality and respect for personal space, and the data reiterated that for the disabled, the role of the built environment is critical and goes far beyond the physical realm (dsd 2016; hammel et al. 2015; harpur 2012; un 2006). in other words, denying people with disabilities access to infrastructure severely impedes them from exercising their right to personal mobility, healthcare, employment, education, taking part in cultural life, recreation and sport, political participation, etc. (dsd 2016; harpur 2012; un 2006; who 2011). to this end, part s: facilities for persons with disabilities was specifically formulated and incorporated into the national building regulations and building standards act, 1977 (act no. 103 of 1977) as far back as 1987. this provided specific guidelines to the developers of new infrastructure in south africa on how to accommodate people with disabilities within the built environment. furthermore, these regulations were revised in 2011 to keep abreast of, inter alia, a significant increase in the south african population, increasingly complex building control systems, and the introduction of new and innovative construction systems (watermeyer 2014). despite these regulations, the experiences of the participants reveal that the current environment significantly inhibits the appreciation of people with disabilities for their diversity and value within society (clarke et al. 2011). it emerged that instances of accessibility left the participants feeling energised coupled with a heightened sense of belonging, and this finding supports previous research (hammel et al. 2015). therefore, despite the prevailing challenges, it was encouraging that these instances motivated the participants to try overcoming their disappointments and collaborate with other stakeholders in addressing issues of social exclusion for people with disabilities (world bank 2016). however, the ongoing lack of policy implementation and sustained inaccessible scenarios ultimately left the participants feeling demoralised and detached from society. the broad range of strong negative emotions generated were similar to the emotions evoked by the lived experiences of adult south african people who stuttered, which ranged from embarrassment to frustration to anger (klompas & ross 2004). the manifestation of these emotions may lead to negative behavioural problems and health-related consequences (tobias & mukhopadhyay 2017; krahn et al. 2015; delbosc & currie 2011; klompas & ross 2004), which may further marginalise people with disabilities from the mainstream of the south african society. although most of the findings of the study were generic with respect to those from previous literature, it was felt that the data uncovered uniqueness, particularly as they relate to the south african context, regarding the intensity of the negative impact that environments could exert on people with disabilities. despite being disabled for over two decades, as well as being from privileged backgrounds, participants were affected to the core of their beings, they were left feeling rejected, inferior, inadequate and questioning their identity within society. this accentuates once again the magnitude of the role of the built environment in creating an inclusive society. furthermore, it is deeply concerning that if these were the experiences of independent, middle-class people with disabilities, there may be little hope for the accommodation of the majority of the disabled population, who are indigent and lack resources (statistics south africa 2011). the constitution of south africa enshrines the right of everyone to an ‘environment that is not harmful to their health or well-being’ (section 24 bill of rights 1996). hence, the data indicate a failure of government and other stakeholders to address the protection, safety and general needs of the most neglected groups within the scope of disability (dsd 2016; un 2006, 2015). furthermore, the lived experiences of the participants revealed that implementation challenges to disability inclusion prevail at an attitudinal, environmental and institutional level (harpur 2012). the slow delivery of policy and legislation also implies that the target goals identified in the sustainable development goals (sdgs) (un 2015), ndp (dop 2013) and the wprpd (dsd 2016) will not be reached in the allotted timeframes. in turn, this suggests that new infrastructure will continue to be developed in an inaccessible manner, thereby perpetuating the marginalisation of people with disabilities into the next generation (mckinney 2016). overall, the findings call for urgent strategies to address current and future implementation of policy, as well as increased involvement of relevant stakeholders (hammel et al. 2015) including people with disabilities themselves (dsd 2016; mckinney 2016; un 2006). finally, more research is needed across a broader range of disabilities to examine the lived experience of people with disabilities within the broader south african built environment. limitations of the study the profiles of the four participants in this study do not reflect the diversity in the population of south africa (maart et al. 2007). all the participants were white, middle-class, with postgraduate academic qualifications. therefore, the findings of the study are not generalisable as the majority of people with disabilities in south africa are black, poorly educated and from a lower socio-economic background, being reliant on disability grants for survival (maart et al. 2007). similarly, it is acknowledged that the examples of the built environment used in the study are more recognised as high-end forms of commuter travel in south africa that are not affordable to most of the population. conclusion in conclusion, this study agrees that an accessible built environment is an essential step towards creating an inclusive society. the findings of this study provide a deeper understanding of the experiences of people with disabilities, who are driven by a desire to take part and be independent, and through this process develop their sense of belonging and dignity within society. despite existing policies to ensure that people with disabilities are accommodated, barriers to participation prevail, which are detrimental to quality of life and well-being and have a negative impact on the possibility of future participation. acknowledgements the authors acknowledge substantial financial support from the harry crossley foundation as well as the tshikululu trust to carry out the larger (doctoral) study that explored the preparation of undergraduate civil engineering students at a local university in south africa, to contribute to the development of an inclusive society that accommodates people with disabilities. competing interests the authors have declared that no competing interests exist. authors’ contributions v.m. collected the data for this manuscript as part of his doctoral thesis in disability studies. s.l.a. was the supervisor of the thesis. both authors contributed to the conceptualisation of the manuscript, and v.m. prepared the first draft. both authors contributed substantially to the finalisation of the manuscript. funding information v.m. received funding from the harry crossley foundation for 5 years and from the tshikululu trust for 3 years, as a doctoral student. data availability statement the data that support the findings of this study are available 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http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf?ua=1. appendix 1: interview schedule with the person with a disability. how has south africa embraced a disability-friendly environment? how successful has the policy been? do you think reasonable accommodation is a fair requirement in any community? is it a burden? what would the person with a disability expect? is employing a person with a disability a risk (financial, more work)? is it worth entertaining this risk and how can this risk be minimised? would there be positive or motivating factors to accommodate people with disabilities in this community? (if you imagine a community in which people with disabilities are fully integrated and accommodated, what would make it a positive community to live in?) how would you define disability? in your experience what has been the impact of interaction of people with disabilities? could you please describe an experience that you have had within the south african built environment? could you please describe the incident in greater detail? how did it make you feel? what, if anything, needs to happen or change to allow people with disabilities to be accommodated within the community? do you have any opinion or experience with [the university] – how has it embraced a disability-friendly environment? in the study, the disability sector is regarded as the ‘consumer’ – in a sense that it is on the receiving end of what [the university] produces as students. the study is exploring how [the university] is preparing its students to contribute to an inclusive society. 13.1 what approach would you expect the university to adopt to achieve that? 13.1 what resources do you think they have? 13.1 what barriers/challenges do they face? with regard to engineering as a discipline, do you think they should have knowledge on disability incorporated into their curriculum? in what way? what would you expect? abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) siyabonga h. kunene department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa wits sports and health, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation kunene, s.h., 2025, ‘barriers, facilitators of sports participation and needs of south african paralympians’, african journal of disability 14(0), a1532. https://doi.org/10.4102/ajod.v14i0.1532 original research barriers, facilitators of sports participation and needs of south african paralympians siyabonga h. kunene received: 23 july 2024; accepted: 15 dec. 2024; published: 28 feb. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite the transformation initiatives, the inclusion of people with disabilities in sports remains a challenge. athletes with disabilities (awds) in lowand medium-socioeconomic countries are still being left behind, including in south africa. they are facing various challenges. objectives: this study aimed to explore barriers and facilitators to sports participation and the needs of awds. method: this was a qualitative study design based on semi-structured interviews. interviews were conducted with south african paralympians. permission was obtained from a physical disability association. ethical clearance was issued by the university of the witwatersrand human research ethics committee. an interview schedule with predetermined questions was used to guide the interviews. interviews were held face-to-face or online from 20 min to 30 min per interview. all participants gave consent. the data were transcribed verbatim and analysed in themes deductively. results: a total of 23 athletes participated, 12 of which were females and 11 were males. participants were mostly africans (n = 23) with a mean age of 26 years. all had over 5 years of sporting experience. barriers included: social stigma, a lack of disability awareness, limited opportunities to participate in sports; limited access to resources and services. facilitators included: health; belonging; fulfilment, winning, and support from loved ones. conclusion: results showed a need to scale up disability inclusion, especially regarding the rendering of healthcare services and making resources available. contribution: this article provides knowledge that may be useful as a baseline for developing a suitable intervention for awds. keywords: barriers; facilitators; needs; athletes; sports; disability; inclusion; paralympians. introduction sport is a form of physical activity with many health benefits including lowering risks of lifestyle diseases, for example, cardiovascular diseases, obesity, type 1 diabetes, and many other diseases (world health organization [who] 2024). people with disabilities (pwds) benefit physically, mentally, and socially when participating in sports (united nations 2011). sports has positively changed the lives of several pwds. it has improved the quality of life and it has the power to inspire greatness. unfortunately, pwds usually spend most of their time indoors doing less active activities, for example, sleeping or watching television, etc. (meyer & mok 2019; pagán-rodríguez 2014). they are not involved in sports and cultural activities. as a result, they do not meet the minimum physical activity requirements of at least 150 min per week (who 2024). this is why their risks of lifestyle diseases will be high. rehabilitation therapists have tried to incorporate sports as part of rehabilitation programmes for pwds (bragaru et al. 2011; van der ploeg et al. 2007). sports for pwds started as a form of a rehabilitation programme and it has developed into what we know now as paralympics. sir ludwig guttman, a neurologist, was the most important figure in the development of sports for pwds. he established the stoke mandeville games, which evolved to the high level of sports participation that we see today (ghosh & bhowmick 2018). people with disabilities face many barriers to sports participation including a lack of motivation, inaccessible facilities, a lack of time and opportunities, a lack of transportation, no access to information, and many more (rimmer et al. 2004; tenenbaum & eklund 2007). issues of inaccessible services, discrimination and stigma can also be barriers to sports participation among pwds (trani et al. 2020). these barriers can be personal, physical, environmental, social, economic, and political. these barriers have a way of compromising the quality of life among athletes with disabilities (awds) because they prevent them from getting involved in sports and cultural activities. there is a need to address barriers to sports participation for pwds. as much as it is important to understand barriers to sports participation, it is also important to understand facilitators. these are factors that encourage sports participation among pwds. studies have reported on various facilitators of sports participation for able-bodied people and pwds. these facilitators are similar. they include benefits to health, passion, desire, fun, enjoyment, the opportunity to socialise, motivation, and many more (craig et al. 2019; jaarsma et al. 2013; shihui et al. 2007; tenenbaum & eklund 2007; wu & williams 2001). these factors can also be personal, physical, environmental, social, economic, and political as seen with barriers. athletes with disabilities face various challenges and have many unmet needs. they are still left behind and not included as compared to able-bodied athletes. south african athletes and many other athletes in other lowto medium-income countries are still facing challenges and have unmet needs (rademeyer 2017). most of the problems they are still facing today were caused mostly by political issues in the past and present. the apartheid era negatively impacted the lives of pwds in countries such as south africa before 1994. people with disabilities, especially the black population, were discriminated against and not provided with needed services. many of them were not allowed to participate in sports because of the colour of their skin and their disabilities. post-apartheid, south africa has seen a faster growth in sports participation and performance among pwds, even faster growth than other sporting codes in able-bodied sports (rademeyer 2017). there is still more work to be carried out to address the challenges and needs of pwds. there is a lack of research that reports on the challenges and needs of awds, especially in south africa and other lowto medium-socioeconomic countries. the aim of this study was, therefore, to determine barriers and facilitators to sports participation and the needs of awds in south africa. research methods and design study design this was a qualitative study that used a semi-structured interview method to solicit responses from awds regarding barriers and facilitators to sports participation and needs. participants this study included paralympians from various sporting codes including archery, athletics, swimming, and cycling. these were athletes who were affiliated with the south african sports association for the physically disabled (sasapd). paralympians were included in this study because of convenience (easy access to their database). these were athletes who represented south africa in the tokyo 2020 paralympics. recruitment before recruitment commenced, the author obtained ethical clearance from the university of the witwatersrand human research ethics committee (no. m220120). permission from sasapd and various sporting codes was given in writing. the author recruited participants by first sending an email to sasapd asking for the dissemination of the study information to their athletes who met the inclusion criteria. the author then scheduled interview sessions with those athletes who showed an interest in participating in the study. participants consented in writing before the data collection process commenced. data collection tool and procedure an interview schedule was used to guide the data collection process. the author developed the interview schedule with questions relating to barriers and facilitators to sports participation and the needs of participants. the questions were informed by the international classification of functioning and health framework (chan et al. 2009). the schedule was validated by five experts who were seasoned researchers in disability studies, especially qualitative studies. the schedule included the following structure: opening remarks and an introduction, outlining ground rules, questions, and a summary of the session. the interviews were conducted face-to-face or via the zoom online platform. on the day of data collection, the author requested each participant to sign a consent form before the interview started. participants were also asked to consent to the interview being recorded. each interview session lasted for approximately 20–30 min. data were collected to the point of data saturation. all recordings were kept in a password-protected hard drive. data analysis the recorded data were transcribed verbatim. the names of the participants were coded numerically in the transcripts. the data were analysed thematically, the process being inductive. the process of analysing data followed the following steps: (1) familiarisation of data by reading and re-reading the original transcript, while listening to the audio recording, (2) development of themes and subthemes from the concepts and categories from the data, and (3) defining and naming the themes and subthemes. the data analysis process involved a second reviewer. several discussion rounds happened among reviewers, and they verified their findings with each other to test the credibility of the data search process. ethical considerations the study obtained ethical clearance from the university of the witwatersrand human research ethics committee (no. m220120). participants received a study information sheet and they consented in writing. they also consented to have the interviews voice recorded. no personal information (e.g. names, contact details, addresses, etc.) was collected from participants. each participant was identified by a special code that was allocated to each participant. voice recordings and transcription documents were stored in password-protected one drive cloud space. only the author and research assistant had access to the data. results demographics a total of 23 athletes participated in the study (table 1). three athletes were from archery, 12 from athletics, five from swimming, and three from the cycling code. most participants (n = 16) had 5–10 years of experience in sports. types of impairments that participants had included were visual impairment, limb deficiency, paraplegia, quadriplegia and cerebral palsy. table 1: demographic profile of participants (n = 23). barriers table 2 shows four themes and 11 sub-themes that emerged from the collected data. the following paragraphs will describe these themes and sub-themes. table 2: themes and sub-themes on sports participation barriers (n = 23). social stigma participants indicated that social stigma is one of their barriers to sports participation. they reported the experience of discrimination by members of their communities because of their disabilities. they reported that some people have negative attitudes towards them. one of the female participants said: ‘… we are humans also, being disabled does not mean we are less of human beings …’ (participant 8, female, 17 years old). another participant said: ‘… we are not a disability, we [are] people who live with disabilities, i wish people could just understand that, including the other normal athletes. this is who we are, we are just having different abilities …’ (participant 4, male, 28 years old) a male participant also mentioned the following, when asked about discrimination: ‘… yes definitely. during my sporting career, that is one of the things that are frustrating to see that even though the constitution makes mention that there must be no discrimination, but it is still happening …’ (participant 18, male, 33 years old) a lack of disability awareness the results also showed that there are still misconceptions about disability among the general population and also among the sports community. as a result, people lack knowledge on how to include pwds in sports. one male participant said: ‘… people need to be educated about disability. i don’t think they know us. they think their own things about us …’ (participant 20, male, 35 years old) limited opportunities to participate in sports another barrier to sports participation is the limited opportunities for pwds to participate in sports. participants mentioned that there are fewer training and competition opportunities for pwds in south africa. one female said: ‘… some of my friends who have funding are the ones who get to go overseas to train and compete. here in south africa there are not many opportunities to compete …’ (participant 6, female, 28 years old) this study also found that a lack of knowledge among athletes and coaches about available competition opportunities is what limits awds from participating. one participant said: ‘… i realised after watching the 2012 paralympics that people with my disability can also play sports. after that year, i then started [playing] sports.’ (participant 1, male, 23 years old) a lack of services and resources a lack of needed services (e.g. healthcare services, lack of qualified coaches for specific disability sporting codes, and lack of transport) is another barrier to sports participation that was identified. a male participant said: ‘… someone like me with paralysis of legs, i need to get physio. getting to the hospital is a challenge, someone must arrange transports for me to go there …’ (participant 15, male, 24 years old) another male archery athlete indicated that he cannot afford rehabilitation services when he happens to sustain an injury: ‘… getting rehab is not easy for us. you physios are expensive …’ (participant 9, male, 43 years old). most of the participants indicated that they do not have medical aids or personal finances to afford the required services. the little money they get from federations or national sports department seems not to be enough. a lack of funding to buy equipment, travel, and access services seemed to be a major barrier to sports participation among awds. most elite awds do not have sponsors and medical insurance. one lady participant said: ‘… sponsors don’t want to identify with us, maybe that is why we don’t get funding …’ (participant 5, female, 17 years old). another female also said: ‘… what i can say is that there isn’t any funding. i’m very careful when i say that. there is funding, but the funding is not accessible to everybody. for instance, the funding i received, i received because i was in the top five in the world, so that was my privilege that i had …’ (participant 12, female, 31 years old) another one said: ‘… money is everything i need, everything needs money. i missed many opportunities because of lacking funding …’ (participant 11, female, 27 years old). one of the participants said: ‘… [i]t is difficult to see a physio because of a lack of funds. i would see a physio properly when we travel for big games.’ (participant 3, male, 34 years old). participants reported that a lack of sponsorships is one of the major barriers. most participants indicated that even the workforce is not inclusive of pwds. one runner mentioned: ‘… [i]t would be better if i was working because i can pay for my travelling and servicing of my artificial legs …’ (participant 1, male, 23 years old). the unavailability and inaccessibility of sporting facilities in communities, especially low socioeconomic communities is a notable sports participation barrier for awds. most available facilities are not disability friendly. a male swimmer said: ‘… swimming pools for training and competition are very scarce in my areas and the whole of south africa. how are we then expected to compete internationally …?’ (participant 4, male, 28 years old) male archery also said: ‘… [i]’m lucky because i do training here on my farm. archery training ranges are very few, some guys come to my farm for training …’ (participant 7, male, 45 years old). healthcare services it was evident that participants had problems in accessing and affording healthcare services. the biggest issue was funding. participants strongly expressed their need for medical and rehabilitation services to deal with their existing conditions and future injuries and illnesses. one female mentioned the following when asked about her needs: ‘… my disability requires me to have medical treatment now and then. my financial situation sometimes prevents me from accessing medical services …’ (participant 2, female, 37 years old) another participant commented about a need for physiotherapy. he said: ‘… [at] least one physio session will help with my issues of stiffness and for general body maintenance …’ (participant 13, male, 30 years old) coaching one swimmer said: ‘… coaches are available but they just need the right skills to deal with disabled athletes …’ (participant 10, female, 24 years old). there were many similar comments from participants that showed a need for specialised coaching. another participant said: ‘… yes we do have coaching, but obviously it takes a little bit of reading up about disabilities and how to do adaptive training and so forth, but i think coaching a disabled athlete is a skill that a coach needs to learn, from the get-go …’ (participant 13, male, 44 years old) awareness another need that was identified was a need for community awareness about sports and disability. participants felt that the public community still lacks knowledge about what disability is all about and how to include pwds in sports. a participant from athletics said: ‘… some people assume things about us. i just feel people lack knowledge about disability. maybe we should do something to educate them about who we are and what we need.’ (participant 23, male, 30 years old) access to information by awds was also identified as a need. most participants indicated that they need to know where to access information about disability sports information. one cyclist mentioned the following: ‘… i honestly didn’t know anything about cycling sport for people with disabilities. i found out about it by chance …’ (participant 21, male, 36 years old). facilitators participants were also asked about facilitators of sports participation. various themes and sub-themes emerged from the collected data (table 3). table 3: themes and sub-themes on sports participation facilitators (n = 23). good health the benefit of good health is what facilitated sports participation in most participants. many mentioned that sports as a form of exercise benefited their physical and non-physical health. someone said: ‘… my involvement in sports started as part of rehabilitation for my condition. running helps to improve my quality of health. that is why i do what i do …’ (participant 19, male, 38 years old) another participant from athletics mentioned the role of sports in dealing with mental health and emotional issues. she said: ‘… [w]hen i could not move my legs after surgery, i didn’t have a purpose for living, but getting involved in swimming helped me a lot with stress and it made me happy again …’ (participant 17, female, 31 years old) sense of belonging the results showed that participants felt a sense of belonging when they participated in sports. they enjoyed making friends and belonging to a community. this facilitated sports participation. an archery athlete said: ‘… the friends i found in archery motivate me to do my sport. without my friend shaun, i don’t know where i would be …’ (participant 16, male, 43 years old). another participant from athletics said: ‘… sports is about friendship. it creates a healthy social environment. it makes me feel normal again …’ (participant 23, male, 30 years old). fulfilment the fun and a sense of purpose were reported as facilitating sports participation among participants. it gave participants fulfilment. one long jumper said: ‘… what encourages me to do sport is the fun and happiness that i get when i’m with my friends who care for me and my wellbeing. i just love it, mostly for that reason …’ (participant 8, female, 17 years old) another participant said sports gave him a reason to exist. he said: ‘… doing sport is one thing that gives me purpose in life. yes, i do work, but sports is what i enjoy more …’ (participant 3, male, 34 years old). winning personal achievement and winning prizes were also reported to be motivating athletes to participate in their sports. a shot-put athlete said: ‘… that feeling you get when you win boosts you big time bro, you don’t understand …’ (participant 9, male, 43 years old). another participant also added: ‘… seeing yourself making progress, getting your pb (personal best) motivates me a lot …’ (participant 1, male, 23 years old). personal drive is another facilitator that came up. one participant said: ‘… i had always participated in sports and i’ve always loved sports and i’ve done athletics and rugby and i’ve participated with able-bodied athletes and my disability (below elbow amputee) made it possible because the severity is not that big, i can still participate against able-bodies athletes. but maybe what made it easy for me was my drive.’ (participant 11, female, 27 years old) another one said: ‘… the first thing is that will inside of you.’ (participant 12, female, 31 years old). support from friends, partners, and family having supportive friends, partners, and family was also reported as a big facilitator of sports participation. it was reported that support from friends, partners, and family played a big role to encourage and provide personal assistance. one participant said: ‘… its people around me, my family, friends, and my boyfriend that motivate me and give me support … they encourage me and help me with everything i need.’ (participant 10, female, 24 years old) one runner also said: ‘… my parents who adopted me played a big role for me to be here. they helped me get new legs (artificial legs) and paid people to teach me how to run …’ (participant 4, male, 28 years old). discussion sports play a positive role in the lives of pds. it improves health, well-being, resilience, and social support for them (mira et al. 2023). sports seem to provide a good setting where pwds can reproduce unhelpful disablist discourses (swartz et al. 2018). the results of this study reported various sports participation facilitators. these are factors that encouraged or motivated awds to participate in sports. these factors included health benefits, a sense of belonging, fulfilment, winning, and support from loved ones. various studies reported similar facilitators, which included health benefits, passion, desire, fun, enjoyment, the opportunity to socialise, motivation, support from friends and family, achievement of goals, empowerment and advocacy, college scholarships, and more (craig et al. 2019; jaarsma et al. 2014; mcloughlin et al. 2017; shihui et al. 2007; tenenbaum & eklund 2007; wu & williams 2001). all these facilitators encourage or motivate pwds to get involved in sports and stay in sports to enjoy the benefits that come with participation. the results also showed numerous sports participation barriers. these barriers included issues of discrimination, stigma, a lack of opportunities, poor access to key services, limited access to resources, a lack of access to facilities, and a lack of knowledge. the challenges reported in this study were personal, physical, environmental, social, economic, and political. these are similar challenges identified among awds in the united kingdom (uk) (ives et al. 2021). in their semi-structured interview study, aves et al. reported that participation was hampered by many extrinsic and intrinsic barriers. the extrinsic barriers included material issues. these issues included poor access to facilities, activities, and services (physical barriers); issues of cost and affordability (economic barriers), and issues of funding and unavailability of services (political barriers). internal barriers included fear of the unknown, lack of self-esteem, feelings of being judged, and many other personal issues (e.g. perceived lack of enjoyment). in another focus group study, rimmer et al. (2004) reported a multifactorial set of similar barriers to sports participation. these barriers ranged from environmental, economic emotional, and psychological, equipment-related, personal, and political issues as well. another south african study described how awds shared their experiences of involvement in competitive sports for pwds (swartz et al. 2018). it was an in-depth semi-structured study conducted among 20 athletes. their participants described complex and contradicting experiences that included some positive and negative experiences. these contradictions highlighted political and ideological tensions relating to the inclusion and representation of pwds. all these challenges show how serious the issues of having a disability are. they show how challenging it is for pwds to enjoy sports as compared to able-bodied athletes. the results of this study also reported the needs of awds, which included personal funding, accessible and affordable healthcare services, the need for suitable coaching personnel, and awareness. despite the transformation agenda to ‘leave no one behind’ by the united nations, pwds are still experiencing many challenges and have many unmet needs (united nations 2011). people with disabilities are still left behind because of the above-mentioned barriers and unmet needs. according to trani et al. (2020), pwds are still facing issues of stigma, discrimination, poverty, unemployment, and poor delivery of needed services (e.g. health and education services). there is a need to address social stigma, discrimination, and all the identified barriers to sports participation including issues of access and affordability of services, especially in countries such as south africa. a robust improvement in the way healthcare services are delivered is critical. a change is critical to ensure that pwds are not left behind. it is necessary to ensure well-being, reduce inequality in all its dimensions, promote inclusion, and ensure availability and affordability of services. there is a need for an intervention that will challenge barriers and cater to the needs of awds, especially in countries such as south africa (kunene 2023). there is a need to think beyond disability and focus on abilities, thus eliminating stigma and discrimination. people with disabilities must be fully included in communities and not feel discriminated and ostracised. everyone has a role to play, including those in positions of authority, those in the healthcare sector, those in the sports sector, those in business, communities, families, and friends. funding is needed, healthcare services are needed, suitable coaching personnel are needed, and awareness must be improved. working together is what will make a difference. there is a need for a robust discussion among relevant stakeholders regarding suitable intervention strategies. a model of care is needed to improve the way healthcare and other services are delivered. conclusion this study aimed to explore barriers and facilitators to sports participation and the needs of awds in south africa. numerous barriers to sports participation were explored. these included discrimination, stigma, a lack of opportunities, poor access to key services, limited access to resources, a lack of access to facilities, and a lack of knowledge. facilitators included health, belonging, fulfilment, winning, and support from loved ones. needs included funding, healthcare services, coaching, and awareness. there is a need to scale up disability inclusion, especially regarding the rendering of healthcare services and making resources available. there is also a need to think beyond disability, have a robust discussion, challenge barriers and social attitudes, and develop and implement a suitable model of care. everyone has a role to play in changing the status quo. acknowledgements the author would like to thank ms zimasa ngquke who assisted with making appointments with participants; dr wendy-ann wood for assisting with transcribing data and all those paralympians who participated in the study. competing interests the author reported that they received funding from national research foundation, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. author’s contributions s.h.k. is the sole author of this research article. funding information this study was funded by the national research foundation. data availability interview voice recordings can be made available upon reasonable request from the corresponding author, s.h.k. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s results, findings and content. references bragaru, m., dekker, r., geertzen, j.h. & dijkstra, p.u., 2011, ‘amputees and sports: a systematic review’, sports 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research methods and design results and discussion conclusion acknowledgements references about the author(s) charlene engelbrecht school of psychosocial education, faculty of education, north-west university, potchefstroom, south africa dorita du toit school of psychosocial education, faculty of education, north-west university, potchefstroom, south africa nico van der merwe school of psychosocial education, faculty of education, north-west university, potchefstroom, south africa chanelle kemp school of psychosocial education, faculty of education, north-west university, potchefstroom, south africa citation engelbrecht, c., du toit, d., van der merwe, n. & kemp, c., 2025, ‘bridging policy and practice: adapted physical education for special needs learners in brics’, african journal of disability 14(0), a1626. https://doi.org/10.4102/ajod.v14i0.1626 original research bridging policy and practice: adapted physical education for special needs learners in brics charlene engelbrecht, dorita du toit, nico van der merwe, chanelle kemp received: 28 nov. 2024; accepted: 19 june 2025; published: 04 sept. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: adapted physical education (ape) focuses on tailoring school physical education (pe) to the needs of learners with special educational needs (lsen), promoting their optimal physical and psychosocial development, which is also one of the priorities of the brazil, russia, india, china and south africa (brics) organisation in addressing the health issues of its people. in view of limited available literature, more research is needed on the state and status of ape in brics. objective: to explore the current state and status of ape in the brics countries. method: employing the qualitative document analysis methodology, school curriculum documents and education policies in the brics countries were analysed inductively within an interpretivist perspective, based on the frameworks of bronfenbrenner’s ecological systems theory and the cultural-historical activity theory. results: although brics policies mandate the inclusion of lsen in pe in mainstream and special schools, specific guidelines for adapting activities in pe could only be found in governmental documents of russia, india and china. teachers of lsen are required to be qualified in special or inclusive education, but specialised undergraduate and professional ape teacher training is not equally available in all brics countries. specific requirements regarding the assessment of lsen within ape are also lacking. conclusion: more comprehensive guidelines are needed regarding teaching strategies, curriculum content, assessment and professional development in ape to address challenges in ape implementation across brics countries. contribution: implementing the recommendations of this study would enhance the physical and psychosocial development of lsen in brics countries. keywords: adapted physical education; brics countries; special educational needs; inclusive education; disabilities. introduction health and education are two of the investment priorities of the original brics, a collaborative organisation consisting of brazil, russia, india, china and south africa (egypt, ethiopia, iran and the united arab emirates joined the organisation in january 2024, and now it is called ‘brics +’) (bbc 2024; o’neill 2021). the main objectives of the brics organisation include economic cooperation, economic growth, global influence and human development among its member nations, of which citizens’ well-being in terms of their education and health are essential components (bbc 2024; o’neill 2021; van jaarsveld 2021). in light of brics’s health development goals, the global increase in disabilities, shown in the 2017 global burden of disease study, which included a 17% increase in physical rehabilitation needs (the optimisation of physical function and participation in persons with physical impairments such as cardiovascular disease and autism) in the brics countries (jesus et al. 2020), is concerning. one way of rehabilitating and addressing physical disabilities and other special education needs such as intellectual disabilities is by means of adapted physical education (ape), which is essentially inclusive or specialised physical education (pe) (block et al. 2021). adapted physical education creates an avenue through which learners with special educational needs (lsen) can be offered equal opportunities in schools to actively participate and develop physically (barros, coelho & martins 2023; gonçalves, leite & duarte 2020). besides physical and motor fitness benefits, lsen also benefit from ape through having an improvement in their psychosocial health (dheesha 2017). however, research in the field of ape in the brics countries show that lsen often do not participate efficiently during pe classes and do not experience social inclusion, because of several challenges in policy implementation (costin & pontual 2020; gale et al. 2022). in this regard, studies in individual brics countries show that challenges faced in the implementation of ape include: pe teachers who are not trained to work with lsen, lsen not always having access to appropriate learning environments because of the lack of needed accommodation and lsen often feeling socially isolated (biktagirova & korotkova 2016; block et al. 2021; burnett 2021; chennapragada 2021; gonçalves et al. 2020). however, no study could be found comparing ape across all five nations, indicating a gap in the literature that this study aimed to address. the ecological systems of a country, including mixed governance systems and national policies on inclusive education and school curricula, play a major role in these challenges experienced in ape in schools. furthermore, as the activities of lsen are dependent on certain social and cultural contexts and can be assisted by specific tools within these ecological systems, the study was conducted within the theoretical frameworks of the bronfenbrenner’s ecological systems theory (est) (bronfenbrenner & ceci 1994; bronfenbrenner & morris 2007) and the cultural-historical activity theory (chat), which will be discussed next. theoretical frameworks bronfenbrenner’s est suggests that an individual’s learning and development are influenced by the regular and increasingly complex interactions between the learner and his or her immediate environment (bronfenbrenner & ceci 1994; bronfenbrenner & morris 2007). according to bronfenbrenner and morris (2007), the immediate ecological environments are conceived as a set of layers, which consists of the microsystem, the macrosystem, the mesosystem, the exosystem and the chronosystem. the microsystem involves the immediate environment of lsen, which includes his physical, social and interpersonal relationships (bronfenbrenner & morris 2007). the microsystem also refers to the child’s disability, child’s attitude towards his or her ability as well as the child’s willingness to be supported (bronfenbrenner & morris 2007; meltzer & muir 2022). the mesosystem refers to the relationships that exist between the different microsystems (bronfenbrenner & morris 2007). the mesosystem thus includes support to lsen and the learning and development of lsen (including direct contact with other learners in the classroom, contact with other peers and the learner’s family outside the school environment) (bronfenbrenner & ceci 1994). in the exosystem, certain environments have an indirect influence on the learner, for example the education system, health services, media, work or a community organisation (bronfenbrenner & morris 2007). the inclusive education vision and mission statements and policies of a government, together with the underlying ethos to support learners who experience barriers to learning and development, form part of the macrosystem (bronfenbrenner & morris 2007; meltzer & muir 2022). the chronosystem relates to the concept of time of the child’s development. as children get older, they react differently to the environmental changes and may be able to determine how that change will influence them negatively or positively (bronfenbrenner & morris 2007). the chat, which was originally developed by vygotsky (1978) and later refined by cole and engeström (2007), involves the relationship between the human mind (what people think and feel) and activity (what people do) in understanding how they learn and develop (emihovich & lima 1995; fletcher 2021; sannino & engeström 2018). the chat recognises the importance of the social and cultural environment and history in shaping experiences, emphasising activities that people engage in and interactions with others, such as teachers, peers and family members (sannino & engeström 2018). in the context of lsen in school, andrews et al. (2021) argue that the object (child) is shaped and directed by activity and that the child’s understanding of the activity within its context (e.g., understanding the value of physical activities in the pe class in a mainstream school) shapes the child’s learning and development. the historical and cultural part of the theory entail the understanding of the motives and the needs of the child within the activity system (andrews et al. 2021). in the context of ape, before physical activity in a system (like the mainstream pe class) can take place, the hidden factors of the child’s disability over time should be understood by the teacher, which is where teacher’s experience in ape plays an important role (andrews et al. 2021). another aspect emphasised by the chat is the effect of tools or artifacts used by the person in the activity (sannino & engeström 2018). tools such as language, teaching strategies, teacher knowledge of adapted physical activities and technology would influence the activity, development and learning of lsen in ape. through the lens of the chat, the ways people learn and grow can thus be understood by looking at the complex interactions between lsen and ape teachers, their social and cultural environments and the tools they use (hancock & miller 2018; sannino & engeström 2018). as one of the aims of the brics organisation is to improve the quality of education in the member countries, including special education to learners with disabilities (van jaarsveld 2021), the development and learning of lsen within ape in each of the brics countries would be influenced by cultural and historical aspects of the ecological systems in each of the countries. against this background and in view of the findings of various studies showing challenges in the implementation of ape in individual brics member states, the purpose of this study was to investigate the current state and status of ape in the brics countries, with the aim of making recommendations for best practice for the benefit of lsen in these, and other, developing countries. research methods and design research design this study used a qualitative approach in which document analysis was employed. the researcher analysed and interpreted the data within an interpretivist perspective in light of bronfenbrenner’s theoretical framework, taking into account the different systems with regard to the learner, teacher, school, state, provincial and national policy makers, with the purpose of making recommendations for best practices in ape in the brics countries. data collection data were gathered through the document analysis method, following the approach outlined by harvey (2022). various documents related to school curricula, education policies from government and organisational bodies, laws pertaining to education and training materials from higher educational institutions in each of the brics countries were obtained from the research databases ebscohost, google scholar and web of science. in addition, information was sourced from the educational websites of each brics country, as well as official government websites. the search terms ‘adapted physical education’, ‘adaptive physical education’ and ‘inclusive physical education’ were employed across all documents. relevant data concerning the condition and status of ape in primary and secondary schools in each specific country were identified, marked and coded. documents that were available in english were used for the document analysis, while documents that were not in english were translated to english via ‘google translate’. initially, 55 documents were retrieved, with 23 documents ultimately being utilised for the primary data analysis. these 23 documents and the key points analysed are shown in table 1. table 1: main analysed documents and key points. data analysis an inductive content analysis of the data extracted from the documents was carried out, following the qualitative content analysis guidelines proposed by harvey (2022) and maree et al. (eds. 2016). this process involved a thorough and systematic review of the document content, coding of the information and the identification of patterns and themes related to the state and status of ape in the educational documents of the brics countries (eds. maree et al. 2016). trustworthiness and credibility ensuring trustworthiness is crucial in qualitative research to validate the credibility of study findings. in this study, a triangulation approach was employed by comparing content across various policy or education documents within a country. to bolster the credibility of the findings, peer debriefing was undertaken. apart from the initial analysis conducted by the primary author, an independent qualitative research expert was independently engaged in the document analysis process, and the outcomes were discussed in separate peer debriefing sessions. moreover, to enhance the transferability of the study, an audit trail was meticulously conducted from the beginning of the analysis. providing a comprehensive description of the research process further contributed to ensuring the study’s transferability (harvey 2022; eds. maree at al. 2016). ethical considerations this study was approved by the research ethics committee of the faculty of education of the north-west university (reference no: nwu–01007–21–a2). given that the study was based on the analysis of documents that were publicly available, there were no major ethical considerations, and the study was identified and accepted by the committee as an ethically ‘no-risk’ study. results and discussion the aim of this study was to investigate the state and status of ape in the brics countries. the themes that emerged from the document analysis were: presence of the ape concept and guidelines, training and qualifications of teachers, and assessment. for easier reference, the main findings and a discussion with regard to each country within that theme will consequently be presented. presence of the adapted physical education concept and guidelines article 28 in chapter iv of the brazilian law on the inclusion of persons with disabilities states that it is mandatory for the public authority to ensure, create, develop, implement, encourage, monitor and evaluate ‘access of the disabled, on an equal basis, to games and recreational, sports and leisure activities in the school system’ (brazilian presidency of the republic [bpr] 2015:article 28). in the national guide for physical activity for the brazilian population, some guidelines are provided for pe teachers in schools working with learners with disabilities: it is important to ensure that all ‘students have access and participate in more and better physical education classes.’ (brazilian ministry of health [bmh] 2021:46) therefore, teachers are urged to: ‘encourage students with disabilities to actively participate in physical education classes.’ (p. 47) ‘encourage, stimulate and let people with disabilities explore the environment as they wish at school.’ (bmh 2021:47) although inclusive education for lsen in brazil, based on public policies, was prioritised between the 2008 and 2018 and mandated the training of specialised teachers who have to conduct specialised services to lsen in schools, bezerra (2020) points out that there is a serious lack of such training opportunities for teachers in brazilian universities, and that more policies should be developed to promote ape to learners with disabilities. other studies (hodge et al. 2018; parente & pessoa 2021; santos & mendes 2021) show that the inclusion process in brazilian education is still being transformed, with the focus moving more to include lsen in mainstream schools. implementing inclusive education in schools, however, is still a challenging aspect in brazil, and inclusion is still a controversial practice within the school system (santos & mendes 2021). in confirmation of the last statement, a recent decree issued by the ministry of education (10.502/2020 establishing a national policy of special education [shinohara 2021]) contradicts the principle of inclusive education by establishing a separate system of special schools, which allows brazilian authorities to direct children with disabilities to special schools if they are considered to not developmentally benefit in regular inclusive schools and need multiple support services. in russia, pe (also called ‘physical culture’) is regulated by the physical culture and sports in the russian federation federal law no.329 (mamazhanov 2022; russian federation council [rfc] 2007). chapter 3, article 28 of this law reads that educational institutions are mandated towards: implementing measures for the development of physical culture and sport of the disabled, and persons with disabilities, adaptive physical culture, and adaptive sport in constituent territories of the russian federation. (rfc 2007, chapter 3, article 28) physical rehabilitation and social adaptation of disabled persons and persons with special needs by methods of adaptive physical culture and adaptive sport is carried out at rehabilitation centres, physical culture and sport centres for disabled persons, educational institutions and organizations for physical culture and sport. (rfc 2007, chapter 3, article 28) the law further relates to the goal of adaptive physical culture and sport: the development of physical culture and sports of persons with disabilities is aimed at increasing their motor activity and is an indispensable and determinable condition for the full rehabilitation and social adaptation of persons with disabilities. (rfc 2007, chapter 3, article 28) furthermore, the physical culture and sports complex ‘ready for labor and defense’ [gotov k trudu i oborone {gto}] (msrf 2017, msrf 2023), a national health and fitness programme implemented by the russian ministry that forms the regulatory foundation of the country’s pe policy, also contains an adapted section with guidelines, tests and norms for learners with disabilities. russia’s policies thus aim to include all learners with disabilities in mainstream schools (rfc 2007; valeeva 2015). unfortunately, many lsen are left out of the education system or accommodated in special schools because of economic reasons (mamonova 2020; valeeva 2015). also, according to van jaarsveld (2021), inclusive policies and practices in different regions of russia vary, and the accessibility of schools is often an obstacle. other reasons for not introducing lsen into mainstream schools include the insufficient training in ape of teachers in mainstream schools, and the availability of special needs experts, psychologists and social workers in special schools (mamazhanov 2022; valeeva 2015). although inclusive education is part of curriculum reforms in russia (msrf 2023), researchers are of the opinion that ape should be developed further (aksenov et al. 2023; mamazhanov 2022). in india, the national curriculum framework for school education (national council of educational research and training [ncert] 2023) states that schools must ensure equal opportunities for all learners to participate in pe and lists one of the requirements that: schools must ensure the participation of students with disabilities in physical education to the extent that is possible for them. this requires adapting play conditions through thoughtful accommodation or modification to enable them to participate. (ncert 2023:421) some examples of such adaptations listed are: increasing the time to finish a run or allowing for individual differences in the skill levels expected of students with disabilities and modifications to game rules to ensure cooperative play among learners of different abilities (ncert 2023). one of the learning standards of pe is even that ‘students will also learn to modify a game or create new ones to include those who may have different needs and abilities’ (ncert 2023:417). the participation of students in all activities stays, however, the responsibility of the teacher in order that ‘games and activities must be chosen so that students of all genders and abilities can participate’ (ncert 2023:438). in the mainstreaming health and physical education (mhpe) curriculum for the secondary and senior secondary school levels in india, one of the main objectives of pe is stated as ‘to address the physical, psycho-social needs of cwsn (children with special needs) in an integrated fashion’ (central board of secondary education [cbse] 2022:5). in the mhpe, guidelines are also provided with regard to the inclusion of lsen in the four strands of health and pe (sport and games, health and fitness, social empowerment through work education and action [sewa] and the health and activity card), with the common recommendation in every strand that ‘students are free to innovate their own mechanisms for inclusion under the guidance of their class teachers’ (cbse 2022:10). although inclusive pe is thus mandated by various laws and policies in india, studies report that these laws and prescriptions are often not implemented. chennapragada (2021) points out that one of the causes of this is that the different types of schools in india are not all affiliated under the two main educational boards (the cbse and the ncert), leading to a lack of national standards for pe and ape. in the study done by chennapragada (2021) involving 18 learners with physical disabilities from telugu-speaking states, the participants reported that they were generally not able to access pe in their schools or sport activities in their communities, and that their pe teachers showed a lack of knowledge and training to work with lsen. similar findings were reported by parents of learners with cerebral palsy (cp) in the study done of paleeri (2020). in the sports law of china (china standing committee of the national people’s congress [cscnpc] 2022), article 18 states that: schools must offer physical education and make it a subject for assessing students’ academic performance. schools shall create conditions for organizing sports activities suitable to the special features of students who are in poor health or disabled. (cscnpc 2022:article18) in the recently released curriculum standards for physical education and health in compulsory education (2022 edition) (ministry of education of the people’s republic of china [moeprc] 2022:6), which forms part of major reforms with regard to pe and health education in chinese schools, one of the six aspects that are emphasised is: ‘paying attention to the individual differences of students’. the standards also include in-depth details on how pe teachers should attend to differences between individual school learners in the content they teach, as well as their teaching strategies, for example: … the selection and design of teaching content should fully take into account the developmental characteristics, physical condition, sports foundation, interests and needs of students … to ensure the basic, diversity and systematic nature of teaching and guiding students to be physically active. (moeprc 2022:121) these guidelines correlate with the requirements of adapting for learners with disabilities so that they can experience the same quality of education, as set out in the law of the people’s republic of china on protection of disabled persons (national people’s congress of the people’s republic of china [npcprc] 2008). also, in the revised versions of the compulsory education curriculum standards for deaf schools, blind schools and schools for intellectually challenged learners, which were released by the (moeprc) in 2016, some guidelines for ‘pe and health’ have been included in the curriculum standards for children with disabilities (liang et al. 2022). although the chinese government has placed renewed focus on the educational rights of people with disabilities as well as on the pe curriculum, several studies have shown that inclusive pe has developed slowly and several challenges to the implementation of ape exist (liang et al. 2022; xu, cooper & sin 2018). these challenges include, among others: inadequate funds, mainstream teachers’ knowledge and training in inclusive education, inadequate curriculum modification, peers’ unfavourable attitudes towards lsen and an ineffective evaluation system for lsen in the regular classroom (liang et al. 2022; xu et al. 2018). according to wang et al. (2020), china does not have enough ape teachers to provide pe to lsen and more ape teachers should be trained to improve the quality of ape for lsen. xue et al. (2023) point out that, although the increased focus on the rights of disabled learners has led to improved living standards of disabled chinese learners, discrimination and social stigma against disability remain in chinese societies. in south africa, ‘life orientation’ (called ‘life skills’ in the lower grades) is a compulsory subject in the national school curriculum, consisting of six topics (development of the self in society, social and environmental responsibility, democracy and human rights, careers and career choices, study skills and physical education) (south african department of basic education [sadbe] 2011). inclusion in pe or ape is not stipulated in the pe curriculum in the national curriculum policy, named the curriculum and assessment policy statement (caps), but inclusivity is required to be applied in all six the topics of life orientation, as stated in the caps: inclusivity should become a central part of the organisation, planning and teaching at each school. this can only happen if all teachers have a sound understanding of how to recognise and address barriers to learning, and how to plan for diversity. (sadbe 2011:5) in the caps (sadbe 2011), it is further recommended that teachers and schools apply the principles of inclusion as stipulated in the guidelines for inclusive teaching and learning (sadbe 2010) as well as in the white paper 6 (sade 2001) in every topic of life orientation. although no specific guidelines pertaining to pe are provided in the latter two documents, very specific pe guidelines are provided (also for learners with other disabilities) in the draft learning programme for children with severe to profound intellectual disability (sadbe 2016) and the draft curriculum and assessment policy statement for learners with severe intellectual disability for life skills physical education (caps lsidpe) (sadbe 2018). in the caps lsidpe, it is stated that these guidelines can be used for teaching pe to other learners with disabilities as well, and that: a learner with a severe intellectual disability must be supported to optimally participate in physical education, as their physical wellbeing and ability to move supports their ability to learn and develop to his/her maximal potential. (sadbe 2018:7) limited research exists on pe and participation of lsen in south africa. bantjies et al. (2015) conducted a study involving 15 learners with cp between the ages of 12 and 18 years in the western cape province and their participation in physical activity, including pe. the researchers concluded that the participating lsen felt isolated as they were not included in team sports, because coaches and teachers were unable to accommodate their particular level of impairment (bantjies et al. 2015). bantjies et al. (2015) also pointed out that lsen’ participation was limited by the availability of resources and facilities, and that some adapted physical activities were only offered to lsen from a certain age onwards, which placed a restriction on their participation and exposure to pe and sport. according to the findings of burnett (2021) in a national study on the state and status of pe, lsen-schools (special schools) in south africa follow a highly valued rehabilitative approach where the focus is on health-inducing physical activities presented by specialised staff. challenges reported for lsen-schools in south africa in the study, include inadequate curriculum content, a lack of clear guidelines for implementation, a lack of adequately trained educators to deliver adapted activities, and a lack of opportunities for lsen to participate with able-bodied learners (mainstreaming) (burnett 2021). another obstacle for the proper implementation of inclusive education is the economic imbalance and social exclusion that still exist in the country (burnett 2021). although the lsen-schools in south africa generally have small classes and pe is provided by trained specialists to ensure that the individual needs of the learners are met, at some special schools, and various mainstream schools, lsen do not participate in pe at all because of insufficient structures and trained pe teachers (oladunni, lyoka & goan 2015). training and qualifications of teachers in chapter iv, article 27 of the brazilian law on the inclusion of persons with disabilities, it is stated that schools and higher education institutes are responsible for ‘… adoption of inclusive pedagogical practices from the programs of initial and continuing teacher training in order to offer continuous training for specialized educational services’ (bpr 2015, chapter iv, article 27) and ‘… training and availability of teachers for specialized educational services, translators and interpreters of libras, interpreters and support professionals’ (chapter iv). according to the national curriculum guidelines for undergraduate courses in physical education, pe teachers should be trained: to diagnose the interests, expectations and needs of people (children, young people, adults, the elderly, people with disabilities, special groups and communities) in order to plan, prescribe, teach, guide, advise, supervise, control and evaluate projects and programs of physical, recreational and sports activities from the perspective of prevention, promotion, protection and rehabilitation of health, of the cultural training, motor education and re-education, physical-sports performance, leisure and other fields that provide or will provide opportunities for the practice of physical, recreational and sports activities. (bme 2004:2) in their overview study of ape teacher training, gonçalves et al. (2020) conclude that although progress has been made in improving the ape training of pe pre-service teachers in various tertiary institutes in brazil, shortages with regard to the specificity and volume of the training still persisted. the study done by hodge et al. (2018) among brazilian ape teachers also showed that the main challenge to inclusion in pe in mainstream schools was the professional and pre-graduate training of the teachers. even though the teachers in the study by hodge et al. (2018) believed in inclusive ape, they struggled to implement the requirements of the laws for inclusive education in the pe class because of a lack of training, knowledge and consequently, a lack of confidence in working with lsen. these findings are supported by those of barros et al. (2023), in a systematic review of ape in brazilian public schools, where the findings showed that there was still a lack of specialised teacher training in ape in the country. teacher training in ape is available at various russian universities in the form of a bachelor’s, masters’ or special degree, as regulated by the federal state educational standards (baranov et al. 2018; national centre for public accreditation [ncpa] 2015). with regard to the continuing professional development of teachers, chapter 3, article 30 of the federal law on physical culture and sports in the russian federation decrees that: the state creates the conditions for professional development at least once every five years for employees of the executive branch in the field of physical culture and sport, employees of physical culture and sports organizations, as well as employees of state employees. (rfc 2007, chapter 3, article 30) baranov et al. (2018) studied federal laws related to inclusive education, including governmental teacher training necessary to implement the federal laws for learners with disabilities in educational institutes. although baranov et al. (2018) found that laws and policies were in place to provide sufficiently trained teachers for lsen in mainstream russian schools, all schools do not necessarily have teachers who are trained with regard to the specific needs of the learner. concerning professional development of special needs teachers. hanssen, hansen and strom (2021) found that although the ministry of education has integrated inclusive education modules into teacher education, a strategic approach to and clear requirements regarding the professional development of special needs teachers are still lacking. hanssen and erina (2022), in a study involving 60 parents of lsen from across russia, also concluded that special needs teachers are often not adequately trained to teach lsen. in the indian manual for school management committees on inclusion in education (ncert 2020:36), it is recommended that there is an additional ‘part time instructor for art education, health and physical education, and work education’ in classes of 35 learners or more. guidelines for teaching learners with disabilities, including physical therapy and physical movement, are also provided (ncert 2020). in the national education policy (nep) of india, it is also stated that ‘the awareness and knowledge of how to teach children with specific disabilities (including learning disabilities) will be an integral part of all teacher education programmes …’ (mhrd 2020:27) and: each teacher will be expected to participate in at least 50 hours of cpd opportunities every year for their own professional development, driven by their own interests. cpd opportunities will, in particular, systematically cover the latest pedagogies regarding foundational literacy and numeracy, formative and adaptive assessment of learning outcomes. (p. 22) the nep further stipulates that the 4-year bed degree, which will include ‘training in time-tested as well as the most recent techniques in pedagogy, including pedagogy with respect to foundational literacy and numeracy, multi-level teaching and evaluation, teaching children with disabilities’ (mhrd 2020:23), will be the minimum qualification for a teacher in 2023, although short courses and certificates for teaching learners with disabilities can also be offered by schools and higher education institutes. although the manual for school management committees on inclusion in education (ncert 2020), the nep (mhrd 2020) and the national curriculum framework for school education (ncert 2023) provide guidelines and requirements for educators who teach lsen in india, as stated precedingly, gale et al. (2022) found that the availability of qualified and trained pe teachers is stated as a challenge to the quality implementation of the pe curriculum. researchers recommend that the ministry of education should use respectful, capacity-building approaches to teacher training, rather than ‘communication of bold requirements in policy statements’ (gale et al. 2022:35). another suggestion, provided by the nep (mhrd 2020) concerning the lack of trained teachers, is the sharing of teachers of specialised subjects such as ape, across schools in a state government. in china, various policies and governmental documents provide guidelines and prescriptions for lsen teacher training. according to chapter ii, article 22 of the decree on regulations on education for individuals with disabilities: regular schools that enrol students with disabilities shall arrange for teachers exclusively engaged in the education for individuals with disabilities … so as to ensure that the students with disabilities can equally participate in educational and teaching activities as well as various activities organized by the schools. (moeprc 2021a, chapter ii, article 22) beside the schools, the responsibility of training special needs’ teachers also lies with county governments, as stated in chapter vi, article 40 of the decree: people’s governments at or above the county level shall place emphasis on educating and training teachers specializing in education for individuals with disabilities and adopt measures to gradually raise their status and benefits, improve their working environment and conditions, and encourage them to engage in education for individuals with disabilities. (moeprc 2021a, chapter vi, article 40) the implementation of compulsory continuing training of principals and teachers of special and ordinary schools and subsidised allowances for teachers engaging in special education are also mandated in the 14th five-year plan action plan for development and improvement of special education (moeprc 2021b) and in article 31 of the compulsory education law of the people’s republic of china (cscnpc 2006). chinese policies and governmental decrees thus show strong support for the training and uplifting of special education teachers. in a systematic review of ape in china, liang et al. (2022) list nine universities in china that offer high-level ape teacher training programmes, of which two offer postgraduate programmes specialising in ape. however, in the study done by liang et al. (2022), the lack of knowledge and training and attitudes of ape teachers towards teaching pe to lsen were identified as two major factors negatively influencing the inclusion of lsen in ape classes in ordinary as well as special schools. similarly, xue et al. (2023), in a study involving 286 ape teachers, found low levels of inclusive education competency of the participating ape teachers, and li et al. (2022), in a study done in singapore, recommended the further training of pe teachers to enhance the attitudes of peers without disabilities towards lsen. in south africa, the white paper 6 decrees that: classroom educators will be our primary resource for achieving our goal of an inclusive education and training system. this means that educators will need to improve their skills and knowledge, and develop new ones. (sade 2001:18) [i]n collaboration with our provincial departments of education, the ministry will, through the district support teams, provide access for educators to appropriate pre-service and in-service education and training and professional support services. (sade 2001:29) in the south african policy on screening, identification, assessment and support (sias) document (sadbe 2014:22), the training of teachers is also mandated, with the quantity and intensity of training sessions increasing from low and medium to high levels of support provided by the department of basic education. in the caps for learners with intellectual disabilities (sadbe 2018), it is also prescribed that ‘an appropriately qualified teacher … is required to teach life skills physical education’ (sadbe 2018:7). while inclusive education is mandated in pre-service teacher education by the legislative framework for teacher education in south africa and most universities offer inclusive education modules or sections of modules in their bed degrees (rusznyak & walton 2019), only a few universities provide pre-service teacher training in ape (nwu 2024; up 2024), and no evidence of official in-service teacher training in ape could be found. in alignment with this, the lack of pre-service as well as in-service teacher training has been identified as a barrier to the implementation of quality pe to lsen in south africa in the studies done by burnett (2021) and bantjies et al. (2015). assessment although not providing details for assessment in ape, the physical activity guide for the brazilian population urges pe teachers to ‘seek to improve the quality of their classes through training and exchange of experiences on the curriculum, pedagogical practices and assessment’ (bmh 2021:3). costin and pontual (2020) point out that even though the brazilian law on the inclusion of persons with disabilities (bpr 2015) prescribes that lsen should be included in pe assessment according to pe-specific competencies and skills set out in the national school curriculum, the mostly decentralised education system of brazil where regional governments must develop their own curricula and learner assessments creates a challenge for assessment in pe for learners with and without disabilities. the tests and norms provided in the russian adapted gto complex for people with disabilities (aksenov et al. 2023; msrf 2023) are used extensively for the assessment of the physical and motor fitness of lsen in pe. the complex comprising of compulsory and optional tests and norms available for people with disabilities is adapted for different age groups. moreover, it has been tested for learners with different disabilities such as visual and auditive impairments and intellectual and physical disabilities (aksenov et al. 2023; rubtcova & pavenkov 2018). although some researchers recommend further refinement of the gto complex for people with disabilities (rubtcova & pavenkov 2018), other studies (aksenov et al. 2023; mamazhanov 2022) show positive results and feedback with regard to the use of the system in ape. in india, the prashast (pre assessment holistic screening tool), a disability screening checklist for schools published by the indian ministry of education (me 2022), can be used by regular and specialist teachers to set a baseline for sequential assessments to monitor learners’ progress in pe. furthermore, the ncert includes ‘… designing a range of activities and sports for all students, including those with disabilities’ (ncert 2023:438), as part of the pedagogy and assessment that pe teachers have to apply in their teaching. with regard to the four strands of pe in the mhpe curriculum, lsen are ‘free to innovate their own mechanisms for inclusion under the guidance of their class teachers’ (cbse 2020:10). although lsen are required to submit a portfolio of evidence that they have participated in the subject health and physical education to be able to write the board exams at the end of grade xii (cbse 2020; ncert 2023), no specific guidelines are provided for the assessment of pe among lsen. the above-mentioned requirement of the ncert (2023) that pe teachers must adapt activities and the assessment thereof for lsen themselves, together with the absence of uniform national standards in pe in india, are considered to be some of the obstacles to the implementation of quality ape in india (chennapragada 2021). in china, chapter ii, article 20 of the decree on regulations on education for individuals with disabilities, mandates that an expert committee consisting of the administrative departments of education, public health, civil affairs and disabled persons’ federations in the counties, should: [a]ssess the physical conditions of school-age children and adolescents with disabilities as well as their abilities to receive education and adapt to school life, so as to give advice on their school admissions or transfers; they may also provide consulting services and give advice on compulsory education for individuals with disabilities. (moeprc 2021a, chapter ii, article 20) as chinese learners have to complete a pe exam as part of their final grade 12 exam (the ‘gaokao’), lsen also have to complete the pe exam, but with adaptations as mandated by governments at the county level: for the students with disabilities who receive compulsory education in regular schools by means of learning in regular classrooms, the curriculum designs, curriculum standards, and teaching materials for regular compulsory education may be applied, but appropriate flexibility may be allowed in terms of academic requirements. (moeprc 2021b, chapter ii, article 23) in special schools, the curriculum designs and curriculum standards (including assessment guidelines) for special education are developed by the administrative department of education under the state council (meprc 2021, article 25), and flexibility in the application of these is also mandated in article 23 of the law on the protection of persons with disabilities: [a]llowing appropriate flexibility in determining the curricula, teaching materials and methods and the age requirement for admission and graduation for special education. (npcprc 2008:article 23) although guidelines for the teaching of pe and health to lsen are provided in the chinese school curriculum documents for deaf, blind and intellectually challenged learners, no specific guidelines for the assessment and grading of lsen in ape could be found in chinese policies, which have been identified by ape teachers as one of the factors that negatively influences inclusive pe in china (liang et al. 2022). in south africa, the sias document addresses the assessment of lsen by referring to: curriculum and assessment adjustments required to allow learners at multiple levels of functioning to access the curriculum and assessment tasks best suited to their needs. such accommodations can be managed at school or classroom level. (sadbe 2014:20) however, with regard to the assessment of lsen in the national protocol for assessment grades r-12, the sadbe emphasises that: the minimum requirements for achieving grades, as spelt out in the national curriculum statement (grades r – 12), may not be compromised. however, within a flexible learner-based and learner-paced approach to the curriculum, all learners could be enabled to achieve their full potential irrespective of whether or not the end result will be a final certificate. (sadbe 2012:31) the practical assessment of pe among lsen is also prescribed in the draft curriculum for learners with intellectual disabilities (caps lsidpe) (sadbe 2018), where it entails a twice-quarterly assessment of the learner’s participation in pe as well as his or her performance of movements, at the level at which they are capable of performing. the caps lsidpe provides specific guidelines on the assessment of the gross-motor and perceptual-motor developmental levels of learners with intellectual disabilities, and declares that these guidelines can be used for lsen with other disabilities as well (sadbe 2018). however, the caps lsidpe was only a draft document and was never finalised after comments from stakeholders had been received (sadbe 2018). assessment in pe was one of the challenges, along with inadequate pe content and implementation guidelines, reported by various teachers teaching ape in the national study done by burnett (2018). recommendations in view of the importance and value of physical activities and sport within ape for the holistic development and rehabilitation of lsen, the development of more specific guidelines and standards for adaptations and assessment in the content areas of the pe curriculum, as well as specific ape pre-service and in-service teacher training, is strongly recommended with regard to the national policies and curricula of the brics nations. furthermore, more comprehensive and robust efforts from the education ministries to implement the policies and laws with regard to lsen and teachers in ape are required. strengths and limitations the strengths and limitations of this study should be taken into account when considering the findings. to our knowledge, this is the first qualitative study to investigate the state and status of ape in the policies of brics countries. strengths of this research further include the thoroughness of the document collection and analysis, offering a vast and diverse range of data and showcasing various viewpoints on ape in national policies. however, there are some limitations to consider. some of the documents had to be translated from russian or portuguese into english, which may have resulted in subtle nuances being lost in translation. moreover, as harvey (2022) pointed out, documents can sometimes contain biases or selective information as they were created for specific reasons. to mitigate this, the researchers carefully assessed the context and purpose of each document (which were available in english). conclusion the purpose of this study was to investigate the state and status of ape in the brics countries by means of the analyses of government education policies and curricula. the findings show that all brics nations have policies in place that mandate the inclusion of lsen in pe and sport in mainstream schools and which recognise the importance of physical activities within pe and sport for more severely disabled learners in special schools. however, specific guidelines for adapting activities in pe could only be found in governmental documents of russia, india and china. in brazil, although general physical activity guidelines for people with disabilities are provided, the national school curriculum requires teachers to make adaptations for lsen in pe and sport without being specific. similarly, the life orientation curriculum (in which pe is embedded) in south africa decrees the inclusion of lsen in mainstream schools but does not provide specific guidelines for ape (although a draft curriculum for learners with severe intellectual disabilities has been published). with regard to teacher training and qualifications, the education policies of all the brics countries require teachers of lsen to be trained and qualified in special or inclusive education. specialised undergraduate teacher training in ape can be received at universities across all the brics countries although it is limited to a few universities in south africa. moreover in india, other ape qualifications (short courses and certificates) are also available. in all the brics countries, the in-service development of teachers who teach lsen is mandated, but specific requirements for ape professional development are mostly lacking. furthermore, literature with regard to ape teacher training in all the brics countries indicates a lack of knowledge, confidence and training among many in-service ape-teachers, showing challenges in the implementation of teacher training policies. the assessment of lsen within ape is integrated in general subject guidelines for pedagogy of all brics members’ school curricula. in general, education policies and curricula require that lsen follow the standard curriculum content with flexibility or adaptations in the assessment thereof, but specific requirements for assessment in ape are lacking. specific fitness tests and norms for learners with disabilities in ape could only be found in the gto-complex of russia, while some assessment guidelines are included in the chinese curricula for auditory, visually and intellectually challenged learners. in the south african curriculum, there is a draft learning programme for learners with intellectual disabilities. more specific guidelines and requirements for the assessment of lsen in ape are thus needed, as confirmed by studies in all the brics member countries. a summary of the findings showing similarities, differences and recommendations with regard to ape in brics countries is shown in table 2. table 2: a general summary of the findings: similarities, differences and recommendations regarding adapted physical education in brics. in the context of bronfenbrenner’s est (bronfenbrenner & morris 2007) and the chat (sannino & engeström 2018), the exosystems, including the national policies and curricula of the brics nations as well as their implementation, form part of the cultural and historical contexts within which lsen learn and develop and have an indirect influence on the physical and other aspects of development of lsen in ape. as the implementation of the national policies and curricula is not optimal in all the countries, the mesosystems of the brics countries are also negatively affected as they include the training and functioning of ape teachers. the shortage of trained teachers, in turn, affect the tools of teaching strategies, experience and knowledge, which influence the activities and learning of lsen in the ape class and ultimately the rehabilitation and development of lsen in the microsystems. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions c.e., d.d.t., n.v.d.m. and c.k. contributed to the conception and design of the study. c.e. and d.d.t. drafted the protocol design, methods and data analysis plan with support from n.v.d.m. and c.k. c.e. conducted the data collection and analysis, with backing from d.d.t., n.v.d.m. and c.k. c.e. and d.d.t. drafted the manuscript. all the authors contributed to subsequent reviews and revisions and the final manuscript. funding information this study received no specific grant from any funding agency in the public, commercial or non-profit sectors. data availability the authors confirm that the data supporting the findings of this study are available within the article. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder or agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references aksenov, a.v., ladygina, e.b., kryukov, i.g. & grachikov, a.a., 2023, ‘technologies for testing relative indicators of physical fitness of disabled people in the format of the 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l.s., 1978, mind in society, harvard university press, cambridge, ma. wang, y.-s., liu l., wei, x.-w. & block, m.e., 2020, ‘the self-efficacy of preservice physical education teachers in disabilities education in china’, sustainability 12(18), 7283. https://doi.org/10.3390/su12187283 xu, s.q., cooper, p. & sin, k., 2018, ‘the “learning in regular classrooms” initiative for inclusive education in china’, international journal of inclusive education 22(1), 54–73. https://doi.org/10.1080/13603116.2017.1348547 xue, r., chai, h., zhu, d., yao, l., yan, w. & fu, w., 2023, ‘analysis of the factors influencing inclusive education competency of primary and secondary physical education teachers in china’, sustainability 15(1), 308. https://doi.org/10.3390/su15010308 abstract introduction research methods and design findings discussion strengths and limitations conclusion, recommendations and next steps acknowledgements references about the author(s) jerome p. fredericks division of occupational therapy, department of health and rehabilitation sciences, faculty of medicine and health sciences, stellenbosch university, cape town, south africa surona visagie centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lana van niekerk division of occupational therapy, department of health and rehabilitation sciences, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation fredericks, j.p., visagie, s. & van niekerk, l., 2024, ‘a qualitative exploration of community mobility experiences of wheelchair users’, african journal of disability 13(0), a1253. https://doi.org/10.4102/ajod.v13i0.1253 project research number: project id: 19117 original research a qualitative exploration of community mobility experiences of wheelchair users jerome p. fredericks, surona visagie, lana van niekerk received: 12 may 2023; accepted: 09 oct. 2023; published: 16 feb. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: freedom of movement, which is dependent on community mobility, is a key contributor to good quality of life and important in the establishment of a person’s community identity. objective: to describe the community mobility experiences of wheelchair users who lived in a socio-economically challenged setting. method: the study setting was paarl, a peri-urban area of the western cape province of south africa. this article reports findings from phase 1 (a reflection on past community mobility and minibus taxi use experiences) of cycle 1 of a co-operative inquiry. nine adult wheelchair users, eight caregivers, six minibus taxi drivers, and four community stakeholders participated. data were collected during a focus group discussion and analysed using inductive thematic analysis. results: four themes, ‘knowledge, attitudes, and actions’, ‘natural, manmade and mechanical environmental barriers’, ‘health and safety concerns’ and ‘poor community participation and quality of life’ were identified. the themes showed how difficult an everyday activity like moving around in the community were for wheelchair users, and how that limited their community involvement. conclusions: wheelchair users living in a low-income peri-urban area struggled to participate in community activities meaningful to them because various barriers hampered community wheelchair mobility and minibus taxi use. contribution: the findings regarding community mobility struggles and specifically minibus taxi access guided specific recommendations and the further phases and cycles of the co-operative inquiry. the purpose of the co-operative inquiry was to allow co-researchers to find their voice and develop solutions to minibus taxi access for wheelchair users. keywords: wheelchair users; minibus taxis; community mobility; barriers; experiences; taxi drivers; minibus taxi drivers; natural manmade and environmental barriers. introduction all people, including wheelchair users, have the right to freedom of movement, that is, moving freely in their own country and between countries as well as changing living and/or employment spaces (rosenfeld 2020). freedom of movement is a key contributor to good quality of life and important in the establishment of a person’s identity within their communities (pyer & tucker 2017). community mobility is essential to realising the right to freedom of movement. driving and community mobility are defined within the occupational therapy practice framework: domain and process, in the following way: [p]lanning and moving around in the community and using public or private transportation, such as driving, walking, bicycling, or accessing and riding in buses, taxi cabs, or other transportation systems. (american occupational therapy association [aota] 2014:s19) community mobility underpins many aspects of life as it is a prerequisite for community participation (poole et al. 2018). humans cannot connect with others, places of occupation, and contribute to community culture and functioning without community mobility (bezyak, sabella & gattis 2017). community mobility supports natural engagements in community-based contexts in different life domains, including domestic, interpersonal, education, employment, civic, religious, sport, leisure, and social life (world health organization [who] 2001). spending time in the community, participating in social, leisure, recreational and civic activities, all lead to a greater sense of fulfilment (seekins et al. 2007), and have a positive impact on quality of life. community mobility has a positive effect on physical and mental health (brusilovskiy et al. 2020; crabtree 2017; zhu & fan 2018) as it provides a sense of freedom, independence and self-worth (bourret et al. 2002; umstattd meyer et al. 2014). lower levels of community mobility lead to decreased social contact, lower levels of physical activity and social exclusion (church, frost & sullivan 2000; fristedt et al. 2014; umstattd meyer et al. 2014). a decrease in time spent outside the home has been connected to an increase in depressed mood and a greater prevalence of depressive symptoms (petersen et al. 2015; tsunoda et al. 2015). physical deterioration, increased utilisation of healthcare services and premature death have also been linked to lower levels of community mobility (gill et al. 2016). community participation by wheelchair users has been shown to be lower than that of ambulant persons (carpenter et al. 2007; harris 2007). decreased community participation has a negative effect on the physical and mental health of wheelchair users (strohle 2009; zabriskie, lundberg & groff 2005). without barrier-free access to their communities, wheelchair users might never be able to come out from their homes to transform resources into personal, social and professional achievements (raja, boyce & boyce 2008). they will remain invisible, unable to contribute to or benefit from services and commercial activities that are available to citizens. safe, affordable, physically accessible and acceptable community mobility options will enhance wheelchair users’ participation in society (bezyak et al. 2017), which can lead to more independent and economically productive lives. however, park et al. (2023) through a systematic review on disability and travel behaviour, have shown that persons with disabilities (including mobility impairments) make two to four fewer trips per week than their nondisabled peers. they also on average travel significantly shorter distances (park et al. 2023). inaccessibility of community settings, challenges to get to public transport stops, decreased vehicle access, attitudinal barriers from drivers and fellow commuters, fear of injury, unsafe spaces, anxiety about the trip, the need for careful planning as well as physical weakness and diminished stamina all interacted to limit independence, spontaneity, and freedom to access the community (park et al. 2023). an earlier systematic review by unsworth et al. (2019) focussed specifically on public transport access for persons with mobility impairments, showed similar findings. unsworth et al. (2019) found that travelling in a wheelchair was hampered by uneven pavements, no dropped kerbs, steps and pedestrian traffic light controls being too high. the review went on to focus on access to kneeling buses, a facility unavailable in the current study setting. the limited space to manoeuvre inside buses, trams and trains was also described. however, none of the 26 studies reviewed by unsworth et al. (2019) or the 115 reviewed by park et al. (2023) were done in africa. duri and luke (2022a) explored transport barriers experienced by africans with disabilities through a desktop literature review. they identified inaccessible transport infrastructure, poor maintenance of existing infrastructure as well as a lack and poor implementation of policy and legislation to be hampering transport access for persons with disabilities. they did not provide information on trip frequency or preferred means of transport. in a study conducted by visagie et al. (2023), in a town neighbouring the current study setting, wheelchair users indicated that they use their wheelchairs to access their communities in addition to minibus taxis and privately owned vehicles. some preferred their wheelchairs to other modes of community mobility, similar to findings in a nigerian study by bombom and abdullahi (2016) which specifically mentions road safety and that the disregard motorists showed them were hazardous. negative attitudes of drivers and fellow commuters were identified by all three reviews referred to above (duri & luke 2022a; park et al. 2023; unsworth et al. 2019). taxi drivers, wheelchair users, and their assistants might also lack the knowledge and skills related to getting into or out of taxis, which might lead to frustration, embarrassment and injuries of wheelchair users during transfers (duri & luke 2022a). in 1996, the white paper on national transport policy had already stipulated that transport for persons with disabilities must be addressed in south africa (department of transport 2000). similarly, the national land transport transition act 22 of 2000 advocates that public transport systems should cater to the accessibility requirements of persons with disabilities (department of transport 2000). more recently, the white paper on the rights of persons with disabilities stated that transport should be universally accessible in south africa to create a free and just society inclusive of persons with disabilities (department of social development 2016). however, despite policies and legislation advocating for inclusive transport, there is still a general neglect of the challenges confronting wheelchair users regarding public transport access in south africa (cawood & visagie 2015; lister & dhunpath 2016; vergunst et al. 2015). inaccessible public and private transportation across the travel value chain remains a major barrier to the right to equality for wheelchair users in south africa (department of social development 2016). factors that negatively impact access to minibus taxis for wheelchair users relate to physical access, safety, cost and acceptability (cawood & visagie 2015; lister & dhunpath 2016; vergunst et al. 2015; visagie et al. 2023). the design of minibus taxis, such as the height difference between the wheelchair and the seat, makes it difficult for wheelchair users to board and disembark (gudwana 2019; pretorius & steadman 2018; vanderschuren, baufeldt & phayane 2019; visagie et al. 2023). inside the taxi, there is little space to manoeuvre (vanderschuren et al. 2021) or store a wheelchair (gudwana 2019). lack of seat belts, reckless driving, overloading and an inability of the wheelchair user to maintain balance, all lead to a sense of feeling unsafe when using minibus taxis (gudwana 2019; kett, cole & turner 2020; lister & dhunpath 2016). it has been widely reported that taxi drivers’ attitudes, and their tendency not to stop for wheelchair users, are financially driven, because the taxi operators and owners’ attitudes are that ‘time is money’. taxi operators’ wages and the profits made by the taxi owner depend on the number of passengers transported per day. thus, overloading and exceeding the speed limit are common practices that are followed to increase income and profit (lister & dhunpath 2016). furthermore, elderly people, children and persons with disabilities might be disregarded as they might take longer to embark and ‘waste time’ thereby decreasing profit (lister & dhunpath 2016). when using minibus taxis, wheelchair users are required to pay an additional fee for their wheelchairs which take up space that could be used for paying customers (cawood & visagie 2015; grut et al. 2012; mudzi, stewart & musenge 2013; venter et al. 2002; vergunst et al. 2015). taxi drivers might be unwilling to assist wheelchair users and have an impatient attitude (bombom & abdullahi 2016; cawood & visagie 2015; gudwana 2019; lister & dhunpath 2016; visagie et al. 2023). similarly, fellow travellers are in a hurry and disinclined to assist a wheelchair user or to wait while a wheelchair user gets on or off a taxi (bombom & abdullahi 2016; duri & luke 2022a; visagie et al. 2023). sometimes, wheelchair users have to wait longer than ambulant passengers in inconvenient, unsafe circumstances at taxi ranks (venter mahendra & hidalgo 2019). both wheelchairs and vehicles, such as minibus taxis in the case of the current study, can provide community mobility. in both instances, an appropriate wheelchair plays a key role in ensuring mobility. a wheelchair unsuitable for the terrain or unsuitable to be loaded in a taxi will hamper community mobility. an appropriate wheelchair as defined by who (2008) and re-iterated in 2023 (who 2023) is one that: [m]eets the user’s needs and environmental conditions, provides proper fit and postural support, is safe and durable, is available in the country; and can be obtained and maintained and services sustained in the country at an affordable cost. (who 2008:11) the challenge is that an appropriate wheelchair for self-propulsion over peri-urban and rural terrain in south africa is not always suited to easy loading and unloading in vehicles (visagie et al. 2015). a lack of knowledge on the side of service providers further hampers prescription of appropriate wheelchairs (visagie, scheffler & schneider 2013). in addition, wheelchair provision in south africa is often dictated by available funding (visagie et al. 2013; visagie, duffield & unger 2015) rather than the four most appropriate wheelchairs. south africans in need of wheelchairs are often provided with a basic four-wheel folding frame wheelchair with little consideration of appropriateness beyond affordable costs (visagie et al. 2015). this model wheelchair should only be considered for temporary and short-term use as it is unsuitable for long term and/or active use in the community. this article aims to build on previous research and describe the community mobility experiences of a specific group of wheelchair users who live in a lower socio-economic setting. it draws from a larger study with the aim to develop strategies to enhance wheelchair users’ access to minibus taxis. the study followed a co-operative inquiry approach with a focus on social justice. as such it was underscored by the social approach to disability, which promotes inclusion and social change through the transformation of society and advocates for the removal of social barriers (shakespeare 2018). specifically, the current co-operative inquiry attempted to promote inclusion of the wheelchair users by facilitating social change and overcoming social barriers through developing strategies to enhance accessibility of minibus taxi services for wheelchair users. research methods and design study design the article reports on the first phase of the first cycle of a cooperative inquiry that was undertaken with wheelchair users and minibus taxi drivers as co-researchers. within a cooperative inquiry design, disempowered persons are given a voice and the power imbalance traditionally found between academic researchers and study participations from disadvantaged groups is reduced (wooltorton et al. 2020). co-operative inquiry typically entails four distinct phases, which together form one research cycle. each cycle starts with a reflective phase, followed by an active phase, a reflective review phase, and the fourth phase which is to plan the next action phase (figure 1) (wooltorton et al. 2020). in this study, co-researchers developed strategies on accessible minibus taxi services for wheelchair users over four cycles, at which time they were satisfied with the outcomes. figure 1: diagrammatic presentation of phase 1 co-operative inquiry cycle. the co-operative inquiry started with an introduction session where the study purpose and activities as well as the role of co-researchers were explained to potential participants. after this explanation, those interested to participate signed an informed consent form. those not interested left the meeting. co-researchers then introduced themselves to each other, discussed the co-operative inquiry purposes and processes, developed a group contract, and assigned roles such as scribes and timekeepers among themselves. in phase one of the cycle, one co-researchers shared experiences on using minibus taxis and providing transport to wheelchair users respectively. the current article reports on these findings (figure 1). a previous paper described the actual methods used, including the informed consent process, how co-researchers were introduced to each other and the study, role division, and the development of a contract among co-researchers as well as how co-operative inquiry can serve as a strategy to empower marginalised groups. the strategies that were developed will be described in a future paper. study setting the current study was done in paarl east, a low income, peri-urban area of the western cape province of south africa. the area is known for rising unemployment, economic downturn, job losses, crime, high rates of teenage pregnancies and high school dropouts. drug-related crimes that affect all aspects of society, for example, family structures, health, the work environment, and the economy, are common in the area (drakenstein municipality 2017). paarl east community members mainly walk or use minibus taxis to access their community. south african minibus taxi services are privately owned and operated, with little fixed infrastructure, such as routes and time schedules. services provided by these taxis are not as regulated as government-funded public transport, and taxi owners are not obligated by law to follow universal access principles (lister & dhunpath 2016; national department of transport 2000). they might choose not to provide services to persons with disabilities (lister & dunpath 2016). as far as the authors know no strategies to enhance accessibility of minibus taxis have been tried in the area. co-researchers also pointed out that the inquiry was a first for the paarl area because in the past nothing had been done to address this issue. paarl is situated among mountain ranges and thus the terrain is hilly with steep inclines. the town has a mediterranean climate with wet, cold winters and dry, hot summers. not all roads and pavements in the town are tarred. some of the tarred roads have potholes. untarred roads in the informal settlements are muddy with pools of water on rainy days. when dry, the ruts caused by vehicles driving on the wet dirt roads and potholes caused by puddles of water, remain. figure 2 provides visual information on the condition of roads and pavements in the study setting. figure 2: photos (a, b, c) showing the streets and pavements in the study setting in dry and wet weather. sampling and recruitment co-operative inquiry requires a substantial time commitment and high level of involvement from participants. therefore, adult wheelchair users, their caregivers and minibus taxi-drivers, living in the study setting, who were willing and able to make this commitment were sought. wheelchair users had to use or wanted to use minibus taxi services. wheelchair users included both those who were independent in the community and those who required assistance. minibus taxi drivers had to have a public transport licence and taxi permit to transport people. twenty-three wheelchair users were contacted, through disabled people’s organisations and by approaching wheelchair users in the community. nine consented to participate in the study. eight caregivers (one wheelchair user did not have a caregiver) also participated. the chairperson of the paarl taxi association group referred the lead researcher to 19 minibus taxi drivers of whom 7 provided consent to participate in the study. the other participants were the 4 stakeholders involved in disability matters in the area and consisted of a professional nurse, a disability activist, a wheelchair repairman and an interested community member, respectively. the co-operative inquiry group was completed by the lead researcher who is also the first author of this article and a research assistant. data collection the cooperative inquiry was done between june and december 2021. the reflection session reported on in this paper was held on 15 june 2021. participants were asked to reflect on the best and worst taxi services they had experienced as wheelchair users or provided to wheelchair users as taxi drivers. wheelchair users’ experiences of moving in the community using their wheelchairs were also explored. the session lasted 180 min and was conducted in afrikaans, the participants’ home language, and the preference of all group members. this and the other sessions were guided by the lead researcher, but all group members were treated as equals, and all had the opportunity to speak their mind. the group contract which addressed issues like cell phone use, timeliness, confidentiality and respect assisted in developing a sense of equality. so did sharing a free cooked meal after sessions. the sessions were digitally audio-recorded, and four sets of field notes were kept by volunteers from among the group. group members also communicated on the whatsapp platform. these messages were included as data with their permission. one of the group members was illiterate. his caregiver read the information to him. accommodations were further made by communicating on the whatsapp platform with voice notes. data management and analysis data were transcribed verbatim and analysed using the six steps of braun and clarke’s (2012) inductive thematic analysis approach. the first author coded the data manually, by reading the transcribed data line by line and assigning codes. codes described what was seen in the data, and the data were organised into meaningful groups such as stairs in house, distances, weather, dogs, violence and disrespect. the codes and all supporting quotes were organised into provisional themes. figure 3 shows the process followed from one group of codes to a category to a theme. this provisional analysis was shared with the second author who further developed the themes, and the two authors reached consensus on the final themes. figure 3: thematic presentation of move from codes to a theme during data analysis. trustworthiness sharing in a group, where co-researchers could affirm each other, enhanced the credibility of findings. a further strength of the study was the inclusion of a research assistant who was known to the community and skilled in qualitative research. his skilful facilitation enhanced participation of group members and the quality and richness of data as also described by flenady et al. (2022). the research assistant previously worked as a physiotherapist in the community. at the time of the co-operative inquiry, he was the chairperson of the foundation for the communities of excellence youth programme to prepare high school learners for tertiary education. to support transferability, a detailed description of the research setting, methods and participants’ demographics was provided. ethical considerations the health research ethics committee of stellenbosch university (s21/01/009) provided ethical approval. the amount of time and level of commitment required from participants were made clear in the informed consent form and during an introduction meeting. written consent was provided by all participants. participants were compensated for their time through cash payments. data were stored in a password-protected stellenbosch university’s sunscholar research repository, where it will be kept for 5 years. findings demographic details: the nine wheelchair user participants were mostly males aged between 32 and 67 years (table 1). all had acquired injuries at different times in their lifetimes, and used manual, four-wheel folding frame wheelchair without adjustability features. five out of the nine wheelchair users could propel themselves in the community. all nine wheelchair users were dependent on assistance when making use of minibus taxi services. some wheelchair users propelled with two hands, other used one hand and one foot to propel. the foot propellers were able to use their wheelchairs independently in the community. table 1: demographic details of wheelchair users. table 2 shows that caregivers’ ages varied between 28 and 67 years. six of them were women. taxi drivers were in their 30s or 40s. table 2: demographic details of other co-researchers. emergent themes four themes emerged for the data as shown in table 3. theme 1, ‘knowledge, attitudes, and actions’ shows that minibus taxi drivers lack the knowledge and skills to transfer wheelchair users into and out of a minibus taxi. it also presents a lack of mutual respect between drivers, wheelchair users and fellow commuters. theme 1 ends with describing how some minibus taxi drivers did provide transport to wheelchair users while others refused. theme 2, ‘natural, manmade, and mechanical environmental barriers’, shows that aspects related to the physical environment such as the hilly nature of the town, dirt roads, and the design of minibus taxis resulted in barriers. theme 3, ‘health and safety concerns’, illustrates how a seemingly everyday activity, like moving around in the community could be challenging, with a negative impact on health and wellbeing. theme 4, ‘poor community participation and quality of life’, shows how community mobility challenges prevented wheelchair users and some caregivers from participating in life roles in the community. table 3: themes and categories that emerged from the data. theme 1: knowledge, attitudes and actions insufficient knowledge and awareness on the side of minibus taxi drivers about the needs of wheelchair users and more specifically how to physically assist them could have possibly led to attitudinal barriers. knowledge minibus taxi drivers shared that they did not have adequate knowledge about how to transfer wheelchair users and how to manage the wheelchair itself. this caused fear among some of them and made them chose to ignore wheelchair users rather than pick them up. ‘my problem is that i am not trained to transfer wheelchair users and what will happen if i am responsible for hurting a wheelchair user? they will sue me, and i don’t want that type of complication.’ (td3 48, male) ‘the reasons why i don’t want to transport wheelchair users is that i don’t know how to transfer them. i also don’t know how to fold up a wheelchair. and some of their wheelchairs lack maintenance and i don’t want to struggle with their wheelchair which will take extra time if one has difficulty to get the wheelchair into the minibus taxis. as you know in our business time is money.’ (td2 32, male) wheelchair user 2 agreed that minibus taxi drivers did not have an adequate understanding of their abilities and what support they need. ‘minibus taxi drivers have no understanding when it comes to the transport of wheelchair users. it seems they lack insight into the medical condition of wheelchair users and will make statements like you can help yourself to get into the minibus taxi. it is disgraceful when you are being handled in such a negative way.’ (wcu2 49, female) wheelchair users experienced negative behaviour fuelled by lack of knowledge from fellow commuters. wheelchair user 9 explained: ‘fellow-commuters don’t have insight when it comes to wheelchair users. i am on medication for high blood pressure, consequently i need to use the bathroom frequently. on this day i wet my pants inside the minibus taxi, which was very embarrassing to me. the comments made by the co-commuters about me wetting my pants made it even more painful. i just wish they had better insight into my condition.’ (wcu9 37, male) the lack of disability-related knowledge might have negatively influenced the relationship between the wheelchair users and minibus taxi drivers and facilitated the development of negative attitudes. attitudes wheelchair users expressed their perception that taxi drivers did not respect them and showed little concern for them and their needs. this led to some choosing not to use minibus taxis for transport as explained by wheelchair user 1: ‘what makes me sad is when minibus taxi drivers don’t have an idea what i am going through to access my community and they make it difficult to get to places where i need to be. currently i need to rely on my daughter to push me where i need to be.’ (wcu1 50, male) wheelchair user 9 added that taxi drivers did not treat wheelchair users with respect. ‘…most minibus taxi drivers don’t handle us with respect. they don’t have passion for the work and are here just for the money. yes, some of them just feel nothing for us…most taxi drivers forgot they are here to deliver a service not only for the so-called normal people but for all of us including wheelchair users. so there needs to be no discrimination from minibus taxi drivers towards wheelchair users.’ (wcu9 37, male) disrespectful treatment led to despair. wheelchair user 6 stated: ‘some of my experiences with minibus taxi drivers were that a few of them swear and shout at me. i really feel hopeless because of my condition and what makes it worse is when minibus taxi drivers don’t want to assist with transport.’ (wcu6 32, male) one of the caregivers accused a minibus taxi driver of not providing his services for her parents: ‘i just want to make it clear or get it off my chest that there was a day that you refused to transport my parents. i was so disappointed in the way you treated us and let us down. i realised that day that you felt nothing for us and specifically for my parents who were so in need of transport. it’s these types of negative attitudes which let a person feel vulnerable and not valued. i saw the disappointment and hopelessness on my parents faces and it breaks my heart to see them like that.’ (c8 41, female) minibus taxi drivers acknowledged their need to make a living might influence their choice not to provide transport for wheelchair users. in the words of minibus taxi driver 7: ‘as you all know it is about making money and putting bread on the table so the easiest way or the less stress to make money works for me and if i don’t need to pick up wheelchair users so let it be it; sorry for sounding so insensitive but i need to take care of my family.’ (td7 37, male) minibus taxi drivers further argued that the attitudes of wheelchair users were part of the problem. they even claimed some wheelchair users are arrogant and rude: ‘wheelchair users and their caregivers should also work on their negative attitude. there are some wheelchair users who are also very rude and expect that we need to jump every time for them.’ (td2 32, male) he was supported by taxi driver 6 who said: ‘some wheelchair users are just too entitled, arrogant and rude and they wanted to be treated with respect but don’t show respect to me as a minibus taxi driver.’ (td 6 38, male) wheelchair users 5 and 8 agreed that respect was a two-way street: ‘to get a positive attitude from minibus taxi drivers the wheelchair users should also have a positive attitude. if the wheelchair user is going to be arrogant, i can guarantee you the minibus taxi driver will also be arrogant.’ (wcu5 55, male) ‘it is a give and take if you treat minibus taxi drivers with respect, they might handle us with respect.’ (wcu8 67, male) it seems that most of the fellow-commuters had negative attitudes towards wheelchair users and were unsure how to interact with wheelchair users. discomfort and fear might have driven the negative attitudes at least some of the time: ‘as a wheelchair user my experience with fellow-commuters is that they are not very friendly and will not assist me. it’s almost like they don’t know how to communicate with me and are very tense in some cases almost like they feel uncomfortable in my presence.’ (wcu4 57, male) ‘my experiences with follow-commuters were that they think that i am unable to talk or to communicate and act like i don’t exist. i also think some fellow-commuters believe the myths of wheelchair users like if they get to close to wheelchair users that they might become like one of us.’ (wcu1 50, male) wheelchair user 3 argued that the negative reactions from fellow commuters might be driven by an emotional reaction to what they perceive as the plight of the wheelchair user: ‘maybe some of the fellow-commuters they don’t want to engage with wheelchair users because maybe they might feel too emotional and will rather prefer not to interact with the wheelchair users.’ (wcu3 52, male) other wheelchair users like wheelchair user 8 experienced the opposite: ‘i had so far the totally opposite experience and the fellow-commuters with whom i have travelled with were very friendly and made me feel welcome in the minibus taxi.’ (wcu8 67, male) from the thoughts of wheelchair user 6 it seems that the attitude of the wheelchair user can influence that of fellow commuters: ‘my experiences as a wheelchair user were that most people will talk with me because i have a positive attitude so it seems if one has a positive attitude more people like in this case the fellow-commuters will communicate with you as wheelchair user.’ (wcu6 32, male) actions some minibus taxi drivers chose to provide transport to wheelchair users even if they felt unsure or unwilling, even to the point of dropping the person off at home rather than the usual drop off point: ‘…the day when i saw that all minibus taxi drivers unwillingness to transport one of the wheelchair users at a minibus taxi rank. something inside was just moved and i told myself if i am also just going to ignore this wheelchair users how will he get to his home and also what about his safety because it was getting late. so, i took him to his house. i had a feeling of sadness or guilt but when i dropped him at his house, i saw the happiness and relief on his face. he thanked me and i believed he was happy.’ (td2 32, male) others provided services with a more positive attitude but still describe the challenges related to it: ‘i told you the story about the wheelchair user and his mother i had to transport to their home. i have transported them with love and passion and did not think twice to assist them. it was very difficult for me to transport because his wheelchair was next to me and i struggled to shift the gears because the wheelchair was in the way. but we got safe to their home, and i think i handled the situation very well.’ (td5 48, male) for minibus taxi driver 3, a change of heart was facilitated by the health crises of a family member: ‘when one of my family members got a stroke, i realised the challenge we as a family had to transport him for his medical check-up and rehabilitation treatment. this have changed my mind set in so many ways when it comes to the transport of wheelchair users because i knew exactly what they have to go through.’ (td3 48, male) accidents that can be caused by loss of bowel and bladder control negatively impacted the use of minibus taxis. taxi driver 2 explained: ‘my reason for not providing services for wheelchair users was because of personal hygiene matters. my brother also a minibus taxi driver, once transported a wheelchair user who made a number two [bowel movement]. i don’t want to deal with these types of aspects because you can just think what it can mean to my business.’ (td2 32, male) theme 2: natural, manmade and mechanical environmental barriers propelling a wheelchair replaces walking for a wheelchair user. however, propelling the wheelchair in the community was difficult because of natural and manmade environmental barriers. making use of a wheelchair for community mobility is not the same and not as easy as walking. importantly, wheelchairs also did not provide a safe or comfortable means to get to minibus taxi pick-up points. natural environmental barriers when making use of taxis, the first obstacle participants had to overcome was getting to the pickup points. propelling the wheelchair on the roads and pavements was tough because wheelchair users did not have the required upper body muscle strength and sustained physical endurance necessary to propel the required distances in often hilly and uneven outdoor environments: ‘i live in an area which is very far from the minibus taxi rank, and i need to cover a great amount of distance to get to the taxi rank.’ (wcu8 67, male) the hilly nature of the environment also created wheelchair mobility barriers with steep inclines making it difficult for wheelchair users to move around in their communities and to get to the minibus taxi pick up points. most of them lacked the physical strength to push themselves up and down these steep hills: ‘in the area where i am staying is a very huge incline and because of my diagnosis i don’t have the physical strength to push myself up these inclines.’ (wcu6 32, male) ‘i am staying on a hill … i need to go downhill, and the incline is very steep. you can just imagine the fear i am experiencing when going down the hill. here you need to trust the person who is pushing you otherwise you might land up with some bad consequences.’ (wcu3 52, male) not all the roads in this community were tarred, and gravel roads meant mud and pools of water after the rains, in paarl’s wet winter season: ‘i live in an informal settlement, there are no tarred roads in these informal settlements. i need to push myself on surfaces which are not suitable for wheelchair users at all. i need to go over gravel, stones, and mud.’ (wcu5 55, male) ‘where i am staying the road is not tarred. after a rainy day i am fearful that my wheels can get stuck in the mud and that i can fall out of the wheelchair.’ (wcu4 57, male) manmade environmental barriers manmade environmental barriers included stairs, pavements, speedbumps and bridges. participants described not having ramps or lifts at their houses which prevented independent access to streets. wheelchair user 1 lived on the second floor of a flat with no lift. he was totally dependent on others to carry him down the flights of stairs to get out of the building. ‘i am staying in a flat where there is no lift. i am staying on the 2nd floor and are totally dependent on others to assist me to go down or up the stairs. my barrier starts right here at my home.’ (wcu1 50, male) once they leave their homes other barriers prevented or hampered wheelchair mobility and created safety issues. wheelchair users express their fear when they must push themselves in their wheelchair making use of the road and not the pavements: ‘my issue is the pavements; it is dangerous for us as wheelchair users to make use of the roads because we can be hit at any time by a motor vehicle. the pavements are not accessible because there are no ramps to get on and off the pavements. the municipality could have done these adaptations to the pavement to allow us to have access to the roads.’ (wcu3 52, male) others did propel their wheelchair on the road itself but were hindered by the configuration of traffic-calming speed bumps in the road: ‘my challenge is the speed bumps. with my spinal cord injury, i am just not able to push myself over these speed bumps. i tried several times to push myself over them, but the one in my street is just too big. i understand the idea behind the speed bumps so that cars can drive slower, and that people might not be hit by a speeding car, but it makes my life a nightmare.’ (wcu8 67, male) a specific bridge in the middle of town was also mentioned as a barrier: ‘then my other concern is the bridge at the main street of paarl … i have to push myself over that bridge to be in town … and this is my problem or barrier; i need to push myself over the lady grey bridge which is very steep. i don’t have the physical strength or the endurance to push myself over that bridge and need assistance from a caregiver of someone else.’ (wcu4 57, male) mechanical environmental barriers because of the physical and manmade barriers presented above, it was difficult for participants to access their community with their wheelchairs. taxis could help them access the community, but often they could not reach the closest taxi pick-up point without assistance, because of the environmental and manmade challenges described above. once at the pickup point, they faced mechanical barriers related to the taxi itself. they emphasised the difficulty they experienced during transferring into and out of the taxis. pointing out the absence of handles at specific, appropriate points inside the minibus taxis: ‘there are just no handrails inside the minibus taxi which makes transfer into and out of the taxi almost impossible.’ (wcu7 54, female) not having a handle to hold on during the transfer left the participants with the feeling that they had no control over the activity: ‘…when i am being transferred into the taxi the first thing i am looking or searching for is a handrail to keep my balance and when it is not there it makes me vulnerable getting into or out of the taxi because i don’t feel in control when doing the transfer.’ (wcu5 55, male) ‘it makes it very difficult for me to access the minibus taxi if there are no handles. imagine you can already not use your legs and now your arms have no handles to hold on which makes you totally dependent on others to assist you.’ (wcu2 49, female) the minibus taxis had no hydraulic lifts or ramps to assist wheelchair users during boarding: ‘minibus taxis are not modified to address the need of wheelchair users. minibus taxis are inaccessible for wheelchair users because it has no ramps or hydraulic lifts to transfer us as wheelchair users into and out of taxis.’ (wcu9 37, male) designated taxi ranks also do not have mobile ramps: ‘what i have noticed that at the minibus taxi pick up points there are no special ramps or even temporary ramps which can assist wheelchair users getting into and out of minibus taxis.’ (wcu4 57, male) participants felt restricted inside the taxi as they required space to transfer themselves into the taxi or move from one seat to another: ‘when i am inside the minibus taxi, i don’t feel independent or mobile because of the limited space inside the taxi. the space is not big enough to move around inside the minibus taxi. space is important and need to be considered when dealing with wheelchair users.’ (wcu3 52, male) physical impairments like paralysis, contractures, and/or spasticity makes it difficult for wheelchair users to sit inside minibus taxis: ‘because i have no control over my legs it makes it very difficult and uncomfortable sitting inside a minibus taxi when the space inside is not big enough to accommodate my leg room.’ (wcu6 32, male) ‘the same with me … i am unable to bend my legs, that is why i cannot sit in front seat next to the driver, i need more space for my legs to be accommodated inside the minibus taxi.’ (wcu4 57, male) theme 3: health and safety concerns weather conditions the setting is known to be cold, and wet with poor visibility during winter and very hot during summer. these climatic conditions made participants apprehensive about their health: ‘what is a safety concern for me is the weather conditions in the winter. it is very cold and wet and if you as a wheelchair user need to go to the taxi ranks in the rain it might lead to ‘flu. and especially we with comorbidities it is not a good idea to get sick because of getting wet. i am fearful that a cold can lead to other secondary sicknesses.’ (wcu7 54, female) ‘all that i can add in paarl it can become very hot. i heard of one of my friends who one day fell out of his wheelchair and there was no one to assist him getting back into his wheelchair. while he was lying on the hot tar waiting for assistance, he picked up 1st to 2nd degree burn wounds. this is the fear i have during summertime that something like this will happen to me.’ (wcu 1 50, male) participants also felt that the low visibility in the rain left them vulnerable and at risk. ‘during the wintertime on rainy days when it is dark it makes it very difficult for the traffic to see you if you don’t have reflectors on your wheelchair or reflective clothes.’ (wcu5 55, male) crime and violence another safety concern was related to violence. crime, violence and gang activities were common in the areas where participants lived: ‘i know how it feels to be mocked, robbed, and assaulted. i woke up inside the hospital. yes, it is not safe in my neighbourhood.’ (wcu5 55, male) gangster activities and shootings worried participants because they were unable to get away quickly when gang fights erupt: ‘i was on my way to the shop when i heard gun shots, everyone was running for their lives except me. i could not get away out of danger quickly. i realised my vulnerability, and hopelessness and that your life is just in the hands of god. i am just thankful i am still alive today, but it was very traumatic for me.’ (wcu4 57, male) ‘the area where i am living there are a lot of gangsters who are tik addicts. i don’t even want to leave my house because they show no mercy and will steal anything for a fix. in the past all my valuables have been stolen and i did not have any insurance on any of those valuables, so it was a total loss for me.’ (wcu7 54, female) ‘gangsters have no respect for anyone. they don’t discriminate when it comes to crime and will attack or rob you for no reason. this makes me feel very vulnerable; not safe because it will be difficult to defend myself as i am wheelchair bound.’ (wcu4 57, male) dangerous dogs participants further described how they had to deal with dangerous dogs on the streets: ‘my biggest fear is not the gangsters but the dogs. because the neighbourhood is so dangerous many people keep dogs to protect themselves, their properties, and valuables. this makes it very dangerous to move around in my community with the idea that a dog can come from nowhere and attack you.’ (wcu2 49, female) the challenges of environmental barriers and safety concerns could have been alleviated by taxis making house calls: ‘most taxi drivers are not prepared to pick you up or to drop you at your home. i had a very bad experience one day when i was on my way to the pickup point for a taxi when i was robbed and assaulted. this could have been prevented if minibus taxi drivers had considered my safety as a wheelchair user.’ (wcu1 50, male) reckless driving using minibus taxis to access the community came with its own safety concerns. participants had fears related to overloading and speeding which can cause loss of control and an accident: ‘the current minibus taxi services are literally and figuratively like that doom advert [well known household insecticide in south africa] “fast and deadly” [figure 4]. we are all aware that most minibus taxi drivers are reckless drivers putting all of our lives in danger … for minibus taxi drivers it is all about making money, so they don’t care when it comes to overloading the minibus taxis in some cases. i must say as a wheelchair user one feels so unsafe because to sit in an overloaded minibus taxi there are so many things that can go wrong if the driver makes an accident. this makes me feel very unsafe.’ (wcu2 49, female) figure 4: a picture of a taxi with the advertisement referred to by wheelchair user 2. the lack of handrails to hold on for stability and safety while in motion was also mentioned by some participants: ‘what troubles me the most is when drivers don’t stick to the speed limits. imagine you don’t have the adequate sitting balance and there are no handles to stabilise you. it is a plan for a disaster to travel in such unsafe conditions.’ (wcu9 37, male) ‘there are no handrails inside the minibus taxi…it makes it very difficult to keep your sitting balance when the taxi is in motion.’ (wcu7) erratic driving caused further reservations about safety: ‘before i was able to take my seat, the driver pulled away so fast that i fell backwards. luckily for me the seat was just behind me, and i fell unto the seat but what could have happened if the seat was not behind me? i could have hurt myself badly.’ (wcu 6 32, male) ‘some minibus taxi drivers don’t stop gently they stop at any time or moment to pick up passengers. we as wheelchair users cannot quickly respond to these unexpected ways they are driving.’ (wcu7 54, female) no seat belts another major safety issue mentioned was that not all taxis had seatbelts and where seatbelts were available almost no one used them. for wheelchair users who do not have adequate sitting balance, use of seatbelts is a must: ‘yes, i am also in agreement that with no seat belts and with no handles inside the minibus taxi it is a challenge to maintain your balance especially when the minibus taxis go around corners.’ (wcu1 50, male). theme 4: poor community participation and quality of life poor community mobility because of the interaction between impairments, inaccessible environments, seemingly inappropriate wheelchairs, and inaccessible minibus taxis led to limited participation in community activities. a caregiver indicated that her son, who is a wheelchair user hardly left the house. ‘my son is 45 years old … i would love to take him with me to the shops or sport fields or just get him away from home. the only time when he gets out of the house is when he needs to see a doctor at the hospital for his check-ups…i need to organise other family members or friends to carry him and hire transport which is very expensive.’ (c3 45, female) wheelchair user explained that he could not do basic activities that most people take for granted like managing his own money and doing his own shopping: ‘i am totally dependent on my daughter because there are no accessible minibus taxi services, i am no longer in a position to receive my own social grant at the paying points or buying my own groceries at shops.’ (wcu3 52, male) wheelchair user 7 mentioned spiritual suffering: ‘what i miss the most is to go to church and to be with my spiritual family and the social interaction i had being part of a spiritual family. the only connection i currently have is when the pastor does home visits, but it is not the same as to worship with your brothers and sisters at the church building.’ (wcu7 54, female) whereas, wheelchair user 8 noted his concerns about missing on family life: ‘i would like to see my grandkids when they participate in sport at the schools. now i only see photos and video clips of them participating in sport which is not the same as being next to the sport fields.’ (wcu8 67, male) discussion co-researchers mainly pointed out barriers that made it difficult for wheelchair users to achieve community mobility. these barriers included insufficient knowledge on the part of minibus taxi drivers, negative attitudes, the town’s geography, manmade environmental barriers, gravel roads, inappropriate wheelchairs, winter weather, danger from dogs, criminals and gangsters, as well as reckless driving. in various combinations, these barriers decreased community mobility of wheelchair users and hampered their participation in cherished community activities and thus their quality of life. unfortunately, many of the described challenges can be related to lawlessness in the study community. the study community is not an exception in this regard. south africa, with its famed constitution, protecting human rights and its numerous laws and policies that are supposed to protect and develop citizens, including those most vulnerable like wheelchair users, fails to uphold and enforce basic laws such as road traffic and dog control rules. more complex phenomena such as gangsterism coupled with crime, murder and drugs have been rife for decades in certain western cape communities with government seemingly unable to deal with it. when law enforcement does take a stance violence escalates as was seen in the recent 2023 taxi violence in the western cape (crises 24 2023). the reasons behind this are complex and related to historical inequalities in south african communities caused by apartheid, currently driven by ongoing corruption. countries like singapore and rwanda (oyamada 2017) have stopped corruption and are prospering. south africa needs to learn from these examples. the health and safety concerns raised pose risks to everyone in the community not only wheelchair users. however, wheelchair users are more vulnerable than most because of their impairment and physical limitations. they cannot run away or hide and often lack the physical strength to protect themselves. cawood and visagie (2015) showed similar findings, indicating that wheelchair users saw themselves as vulnerable and soft targets for criminals. community members have the right to protect themselves and their properties against crime by keeping guard dogs. however, fences can be in disrepair and dogs roam the streets freely; a situation that unfortunately often goes unchecked by local government officials, especially in poorer, more crowded areas of town. it is important that local government enforces regulations regarding dog ownership to ensure that community members are not at risk of being attacked by dogs when out in public. similar to, current findings duri and luke (2022b) found that drivers of buses and minibus taxis in tshwane lacked the knowledge to assist wheelchair users and were reluctant to assist them because of fear of hurting them and being sued; perhaps because minibus taxi drivers and fellow commuters have little knowledge of and interaction with wheelchair users. little understanding of the impairments of wheelchair users and how it affects functioning might have caused unrealistic expectations of what the wheelchair users can and cannot do to get into and out of taxis. knowledge on how to assist persons with various impairments with transfers and how to fold and store wheelchairs are not intuitive and must be taught (duri & luke 2022b). not knowing how to provide assistance coupled with the uncomfortable emotions disability often evoke, as eloquently described by hughes (2020), could have led to the decision of some taxi drivers not to provide transport to wheelchair users. one taxi driver in the current study who did provide transport to a wheelchair user, could not quite label his emotional discomfort, but described it as ‘sadness’ or ‘guilt’. hughes (2020) explains that emotions, like pity, guilt, fear or even disgust, and not knowing how to act or what to say are common occurrences among persons without disabilities, such as drivers and fellow commuters in the current study, when they encounter persons with disabilities. these uncomfortable emotions might result in people distancing themselves from the person with the disability (dohmen 2016). seeing a person with a disability might remind others of their own vulnerability and cause inner tension they would rather avoid (dohmen 2016). usually, these reactions can be remedied by education and awareness raising (dohmen 2016). if not remedied, these emotions can manifest through disrespect and rudeness towards wheelchair users as described in the current findings and shown by bezyak et al. (2017) and duri and luke (2022b). unfairly, the burden often falls on the person with the disability to reach out and put others at ease. identified environmental barriers were mostly manmade. norms applied in the planning and construction of roads, pavements, bridges and vehicles did not include consideration of universal design principles (duman & asilsoy 2022). poor visibility on cloudy days and at night can have serious consequences for wheelchair users if they do not wear reflectors and do not have access to the pavements. reckless driving that put pedestrians at risk was not reported by current participants, but is common in south african peri-urban areas. the disregard of universal design was probably not conscious but based on deep-seated ableist thought patterns in our societies (hamraie 2017). this excludes not only wheelchair users, but also others that use wheeled devices such as parents with strollers, persons with mobility impairments and people using shopping or other carts to transport goods (often used for activities related to livelihood creation) (duman & asilsoy 2022). continued disregard for universal design principles in urban planning and design thus created conditions for social and occupational injustice (duman & asilsoy 2022). seat belts are a requirement according to law, but most co-researchers indicated that seat belts are seldom or never used in minibus taxis. not wearing a seatbelt and erratic driving such as fast lane changing and cornering, quick stops and starts make wheelchair users more vulnerable to injury than their abled bodied peers because they are less unable to maintain their sitting balance because of paralysis or weakness of limbs. these experiences draw attention to risks experienced by all minibus taxi passengers. the toll that taxi accidents take in terms of lives lost and morbidity is widely reported in south african media, yet is seemingly not addressed by road traffic officials. the reasons are unclear and require further study. maleka et al. (2012) indicated that wheelchair users would rather stay at home because of fear in conjunction with the transport problems. it is important for stakeholders to advocate for community safety of wheelchair users and other vulnerable groups such as children and elderly people and explore ways in which the police and neighbourhood watch systems can assist to make the communities safer for all, including wheelchair users. travelling in a wheelchair on wet, muddy gravel roads poses additional challenges to the general health risks of cold wet winters. wheelchair users and those pushing them face slippery conditions, dirty hands and clothes as well as the risk of the wheelchair getting stuck, or tipping. this increased the risk of injuries, because of falling out of the wheelchair, or getting ill, on account of being exposed to wet and cold weather. bezyak et al. (2017) indicated similar concerns in a north american study. rainy weather also decreases visibility. but wheelchair users can increase their visibility to motorists with reflectors on the wheelchair, reflective clothing, as well as adding a small flagpole. none of the wheelchair users were issued with active use wheelchairs with an adjustable centre of gravity, or by centring weight over the rear wheel which enhances mobility and prevents castors from getting stuck. all-terrain models would have been the most appropriate wheelchair considering the physical environment. wheelchairs with a short wheelbase are not appropriate for negotiating dirt roads, and obstacles like kerbs and speed bumps (visagie et al. 2015). motorised wheelchairs should be considered (bearing in mind increased costs) for wheelchair users who lack the endurance and/or physical power and muscle control to master basic mobility skills to independently access the community (visagie et al. 2023). strengths and limitations co-operative group members were passionate about the topic and aligned themselves with the objectives of the study and shared ownership of the process. data were collected directly after south africa came out of a prolonged coronavirus disease 2019 (covid-19) lockdown. some wheelchair users, mostly those who were older, who were approached to participate in the study were afraid of contracting the disease and therefore chose not to participate. this decreased the age range of participants. however, those who did participate had a variety of diagnoses and thus differing abilities, which meant a spectrum of experiences could be explored. conclusion, recommendations and next steps recommendations recommendations are made keeping national and international policy such as to the united nations convention on the rights of persons with disabilities (uncrpd) in mind. as also recommended by duri and lake (2022b), workshops with minibus taxi drivers and wheelchair users together should be done to work on respect, understanding and communicating with each other and to explore optimal ways for wheelchair users to board and disembark as well as safety during transit. addressing stigma around disability through open dialogue both with taxi drivers and other community members may also be beneficial. it is important that wheelchair users together with other vulnerable groups and health workers emphasise to city planners that all roads especially those in informal settlements, where people move about on foot or in wheelchairs and/or bicycles, should be tarred, and pavements should be smooth with kerb cuts. accessible safe pedestrian crossings should be available. this study again highlights the need for universal design in transport infrastructure and that the roll-out therefore, which currently is limited to a few major south african cities, should be accelerated. placing sturdy rails or grab bars at strategic points throughout the taxi is something manufacturers can be made aware of. this will benefit wheelchair users as well as all commuters. minibus taxi drivers, wheelchair users and their caregivers should ensure that seatbelts are always secured when making use of minibus taxis. lobby for availability of a range of wheelchairs to enable wheelchair users to be fitted with the most appropriate wheelchair meeting their functional and environmental needs. this may include provision of more than one wheelchair to allow community access and upskilling therapists and education of procurement and finance teams. to enhance safety, it is recommended that wheelchair users always ensure someone knows their travel plans, have a cell phone that can be tracked and which is programmed with emergency numbers. if possible, they should not travel alone. existing legislation regarding road traffic laws, dog ownership, violence and crime must be enforced. conclusion this study provides a variation on a story often told, but no less important because of its familiarity. the challenges facing wheelchair users when accessing minibus taxis have been well described in literature; however, the views of minibus taxi drivers are not usually included. their reality can be further explored in future studies. additionally, the link between poor community mobility and community participation has not often been made in african research. finally, the unfortunate conclusion that several of the obstacles, danger, and emotional upheaval are caused by a general state of lawlessness in south african communities is an unpalatable truth that has become such an integral part of south african life that it is hardly noticed. next steps this article reports on the first step of the inquiry. in further phases, different strategies and cycles were planned, actively tried, and then reflected on to deal with some of the identified challenges. the findings included: transfer techniques, ways of storing the wheelchair in the minibus taxi, knowledge building and awareness raising, home pick-up and drop-off, as well as subsidising different access features such as ramps or a hoist and docking station in a few minibus taxis. these will be described in future articles. acknowledgements j.p.f acknowledge all the co-researchers for providing their consent and willingness to participate in the inquiry. rev j. pansegrouw for the availability of the venue. ms m. johnson for her support. mandy fredericks for assisting with the logistics. my supervisors surona visagie and lana van niekerk, and hamilton pharaoh, the research assistant. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.p.f. formulated the research aim and objectives with the primary study leader s.v, contributed to the conception and design of the work, collected the data, was involved in transcription, translation and analysis of the data, and 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community-based therapeutic recreation and adaptive sports program’, therapeutic recreation journal 39(3), 176–191, viewed 16 april 2018, from http://js.sagamorepub.com/trj/article/view/971. zhu, j. & fan, y., 2018, ‘daily travel behavior and emotional well-being: effects of trip mode, duration, purpose, and companionship’, transportation research part a: policy and practice 118, 360–373. https://doi.org/10.1016/j.tra.2018.09.019 abstract background research methods and design results discussion conclusion acknowledgements references about the author(s) aviwe s. mgibantaka division of epidemiology and biostatistics, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa department of rehabilitation medicine, faculty of medicine and health sciences, walter sisulu university, mthatha, south africa alfred musekiwa school of health systems and public health, faculty of health sciences, university of pretoria, pretoria, south africa moleen zunza department of global health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa citation mgibantaka, a.s., musekiwa, a. & zunza, m., 2024, ‘survival rate of diabetic-related lower extremity amputees in hospitals in the eastern cape’, african journal of disability 13(0), a1503. https://doi.org/10.4102/ajod.v13i0.1503 original research survival rate of diabetic-related lower extremity amputees in hospitals in the eastern cape aviwe s. mgibantaka, alfred musekiwa, moleen zunza received: 25 june 2024; accepted: 04 oct. 2024; published: 15 nov. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: diabetes mellitus (dm) is a global health concern that has greatly affected south africa. the gap in the current management of dm has resulted in complications such as lower extremity amputations (leas) and death. eastern cape province reflects this struggle, with disparities in access to healthcare and poor health outcomes. understanding survival rates and associated factors between the urban livingstone hospital and the rural nelson mandela academic hospital can improve health interventions and outcomes. objectives: this study compared the survival rate of patients in urban areas and those in rural areas. method: this retrospective cohort study was conducted in an urban and a rural hospital by reviewing existing medical records of diabetic patients who underwent an lea between 2016 and 2019. results: the retrospective cohort study examined 439 diabetic-related lea cases. this study found that residing in rural areas significantly decreased the risk of mortality by 62% compared with living in the urban areas. factors such as haemoglobin a1c (hba1c) levels, nephropathy, cardiovascular disease, human immunodeficiency virus (hiv), other comorbidities and level of amputation significantly influenced survival probabilities. conclusion: survival analysis indicated a significant difference in the 3-year survival probabilities of the two groups, favouring rural residency (p = 0.001). the biggest cause for concern between the two regions was uncontrolled blood glucose levels as this resulted in high mortality rates. contribution: insights from this study have shown that introducing podiatry and orthotics at primary healthcare (phc) could improve foot care and reduce diabetic-related leas and mortality. keywords: mortality; diabetes mellitus; diabetic foot; lower extremity amputations; comorbidities. background diabetes mellitus (dm) is a chronic condition that requires interminable medical care to hinder the development of its complications. in recent years, there has been a rapid upsurge in the prevalence of dm in underdeveloped and developing countries. in south africa, the prevalence of diabetes has almost tripled from 4.5% in 2010 to 12.7% in 2019 (grundlingh et al. 2022). diabetes-related mortality has increased in south africa, from 5.15% in 2014 to 5.5% in 2016 (mtshali & mahomed 2020). according to lee et al. (2020), the prevalence of diabetes is increasing because of the ageing population, lack of exercise, unhealthy diets, population growth and increased body mass index (bmi), thus resulting in a rising incidence of diabetic foot (df). results from the south african national health and nutrition examination survey (sanhanes-1, 2011–2012), the country’s first national survey on non-communicable diseases revealed that just half (51%) of patients with diabetes on treatment had controlled blood glucose (hba1c < 7%; mtshali & mahomed 2020). approximately 2.5% of patients with diabetes develop df annually, and 15% are predicted to be at risk of developing df during their lifespan (namgoong et al. 2016). diabetic foot is defined as infection, ulceration or destruction of tissues of the foot of a person with, or previously diagnosed with, diabetes (shabhay et al. 2021) and is the leading cause of infection, hospitalisation and diabetic-related lower extremity amputations (leas). furthermore, it is estimated that up to 80.6% of people living with diabetes (diagnosed and undiagnosed) in south africa have an unfulfilled foot care need, especially at the primary healthcare (phc) level (ntuli & letswalo 2023). diabetic patients need aggressive foot care and screening to avoid amputation and prevent the progression of the disease (khan et al. 2020; shabhay et al. 2021). patients with df are not only vulnerable to leas but also a reduced life expectancy, with both hospitaland community-based studies reporting a 5-year survival rate of approximately 55% (lin et al. 2021). the survival rate in diabetic patients who have developed leas is poorer than that of cancer patients (lin et al. 2021). the high number of patients with uncontrolled diabetes worsens the effects of the rapidly increasing diabetic burden on health systems (mtshali & mahomed 2020). management of diabetes and associated complications accounted for 12% of global healthcare expenditure in 2015, and it was forecasted that this figure would increase to 19% of the global healthcare expenditure by 2040 (mtshali & mahomed 2020). in south africa, 8.5% of the country’s gross domestic product (gdp) is allocated to healthcare, 3.5% more than the recommended healthcare expenditure per country by the world health organization (ntuli & letswalo 2023). there are many factors associated with diabetic-related leas. these include gender, duration of diabetes, age at diabetes diagnosis, poor glycaemic control, diabetes-related microvascular complications (neuropathy, nephropathy, retinopathy), insulin therapy, body mass index, smoking, lipid abnormalities and prior amputation. furthermore, diabetic-related leas are a major complication negatively affecting patient survival and quality of life (wiessman et al. 2015) and have significant health and socioeconomic consequences with unfavourable effects on the quality of life (namgoong et al. 2016). lower extremity amputations increase the economic burden on the healthcare system of a country, as they result in loss of income and independence of individuals and increase morbidity and mortality. south africa uses a referral healthcare system, with phc being first-level entry into the south african healthcare system. this is where patients receive standard care focussing on disease prevention, health promotion and referral to higher and more advanced levels of care, should the need arise (ntuli & letswalo 2023). people living with diabetes receive monthly chronic treatment and 6-month blood glucose monitoring at phc (ntuli & letswalo 2023). there are limited data on survival experiences of diabetic patients with leas. we conducted a retrospective study comparing the survival rates of patients with lea, at livingstone urban hospital and nelson mandela academic rural hospital (nmah) and explored factors associated with 3-year survival rates. study findings may inform allocation of medical resources and targeted management and monitoring of diabetic patients with leas at higher risk of mortality. research methods and design study design we conducted a retrospective cohort study reviewing medical records of adult patients who had undergone diabetic-related leas in livingstone hospital and nmah between 01 january 2016 and 31 december 2019. study setting the study was conducted at nmah in mthatha and livingstone hospital in port elizabeth (gqeberha). nmah is located in the eastern region of the eastern cape province (former transkei homeland) and provides services mainly to the rural parts of the province. livingstone hospital services the urban population of the western region of the province. the tertiary hospitals provide surgical, post-trauma counselling, physiotherapy and occupational services. sample size estimation the sample size calculation was done using stata version 17.0 statistical software (college station, tx: statacorp llc). a study by beeson et al. (2023) reported diabetic-related lower extremity amputee mortality rate in an urban setting of 19.15% at 5 years, and a study by brennan et al. (2022) recorded rural mortality rates to be at 28% at 5 years. we assumed similar mortality rates at 3 years to detect a mortality rate difference of 8.85% between the urban and rural hospitals. using the stata command, power two proportions 0.1915 0.28, test (chi-squared), a sample size of 360 in each group (total of n = 720) was required, to achieve power of 80% at the 5% significance level. to account for missing data, the sample size was inflated by 15%, 424 patients for each group. study population we included adult female and male patients (18 years and above) at livingstone hospital and nmah, with diabetic-related leas and surgical debridement. patients with amputation distal to and including disarticulation of the hip were included. patients with non-diabetic and traumatic-related amputations were excluded from the study. during the peak of the coronavirus disease 2019 (covid-19) pandemic, a lot of elective surgeries were rescheduled as the focus had shifted to the pandemic; therefore, we excluded patients presenting at the hospitals in year 2020. study procedures and measurements we retrospectively reviewed medical records of patients at two tertiary hospitals in the eastern cape province, south africa. we extracted data from 01 january 2016 to 31 december 2019 of patients meeting eligibility criteria, using discharge summaries and the health management system 2 (hms2) database. we extracted data of eligible patients with complete treatment data in discharge summaries. a discharge summary is a detailed report on the biographical details of the patient, referring practitioner details, hospital details, clinical diagnosis on admission, investigations (blood tests), imaging, final diagnosis during the patient’s stay at the hospital, patient management, complications suffered by the patient, procedure performed on the patient, treatment (medication) on discharge, condition of patient on discharge, future management with explanations for changes and final disposition. the eastern cape department of health uses the hms2 for electronic storage of patient clinical data. currently, the hms2 database records patient biographic information, all admissions at hospitals at different times, outpatient department visits and the status of each patient as being alive, unknown and died. unknowns are present when the final disposition has not been recorded on the discharge summary. patient statuses are updated every midnight. we extracted sociodemographic characteristics, including age in years, gender (male or female), marital status (single or married), employment status (employed or unemployed) and residence (rural or urban). clinical characteristics included hba1c percent (%) diabetic-related macrovascular and microvascular complications (neuropathy/nephropathy/retinopathy), insulin therapy, previous amputations and level of amputation, diagnosis on admission, length of hospital stays, transfer and/or referral of patients to other departments or specialities during admission, foot ulcer classification (meggit–wagner classification), surgical operation(s) and final disposition. the outcome variable was time to all-cause mortality, from the date of amputation. statistical analysis stata version 18.0 was used for statistical analysis. continuous variables were summarised using the mean (standard deviation [s.d.]) or median (range). categorical variables were summarised as count (percent). the chi-squared test or fisher’s exact test was used to test associations between categorical variables. the t-test was used to compare means between the two groups. the kaplan–meier method was used to estimate survival probabilities. the kaplan–meier curve was used for visual display of survival probabilities. we used the log-rank test to compare the survival distributions of diabetic-related lower extremity amputees in the urban livingstone hospital and the rural nmah. we explored factors associated with 3-year mortality using cox regression model, and geographical location was the exposure of primary interest. we reported hazard ratios as measures of association with corresponding 95% confidence interval (ci). variables with a p < 0.1 in the bivariate cox regression analysis were included in multivariate cox regression model. significance level was set at p < 0.05 in the multivariate cox regression. ethical considerations stellenbosch university health research ethics committee (hrec) approved the study (reference no: s23/06/144). eastern cape department of health granted permission to conduct the research at livingstone hospital and nmah (ec 202309_002). participants were assigned a unique identifier study number to protect the identity of the participants. results we included 396 patients from livingstone hospital and 43 patients from nmah, much less than the sample size estimated for this study because of medical files with incomplete data and missing patient files. sociodemographic characteristics the mean age of the participants was similar in both the groups, 60.9 years in livingstone hospital, 59.2 years at nmah and the overall mean age was 60.7 years. male participants were dominant (69.9%). many of the participants were married, divorced or widowed. more than 70% of participants were unemployed (table 1). table 1: sociodemographic characteristics of study participants (n = 439). clinical characteristics participants clinical characteristics are presented in table 2. the overall mean (s.d.) hba1c was 11.4% (3.8%). the mean hba1c in the livingstone hospital and nmah samples were 11.4% (3.9%) and 11.6% (3.2%), respectively. more participants had neuropathy in the livingstone hospital population (21%) than those in nmah (7%; p = 0.03). table 2: summary statistics for clinical profiles of patients and health system factors. approximately 56.7% of the participants were on insulin and oral medication and 43.3% on oral medication therapy. in livingstone hospital, 58.8% were on insulin therapy and oral medication, while in nmah sample, only 37.2% were on insulin therapy and oral medication (p = 0.01). the diagnoses at admission were gangrene (32.6%), infections (4.6%), sepsis (15.5%), critical limb threatening ischaemia (clti) (14.1%), non-healing ulcers (32.1%) and necrotising fasciitis (3.2%). in livingstone hospital, gangrene (31.1%) and non-healing ulcers (31.8%) were the most common diagnoses on admission, and in the nmah, the most common diagnoses on admission were gangrene (46.5%) and sepsis (32.6%, p ≤ 0.001). patients from both livingstone hospital and nmah had been referred to other departments within each hospital such as dietetics, physiotherapy, orthotics and prosthetics, occupational therapy and optometry for additional health services. the final disposition differed between livingstone hospital and nmah. in livingstone hospital, 71% of the patients were discharged to go home, while in the nmah sample, 15.7% were discharged to go home and the rest (83.3%) were sent back to the referring hospitals (p < 0.001). survival experiences of diabetic-related lower extremity amputation between livingstone hospital and nelson mandela academic rural hospital overall, 40% (173/429) patients died by year 3. at 1 year, 22% (86/386) of patients in the urban livingstone hospital had died compared to 12% (5/43) of patients at rural nmah. we found no difference in the 1-year survival experiences between diabetic-related lower extremity amputees in the urban livingstone hospital and the rural nmah (p = 0.10; figure 1). figure 1: kaplan–meier survival estimates of patients at livingstone hospital and nelson mandela academic rural hospital in year 1. at year 3, 43% (166/386) of the patients in the urban livingstone hospital had died compared to 16% (7/43) patients at rural nmah. we found a significant difference in the 3-year survival distributions of the two groups (p = 0.001; figure 2). figure 2: kaplan–meier survival estimates of patients at livingstone hospital and nelson mandela academic rural hospital in year 3. factors associated with 3-year survival among patients with diabetic-related lower extremity amputations three-year survival was significantly associated with geographical location, with an hr of 0.38 (95% ci: 0.18–0.83), which showed reduced mortality for nmah residents. a percent increase in hba1c increased the risk of mortality by 4%, hr 1.04 (95% ci: 1.00–1.09), and major amputation almost doubled the risk of mortality, hr 1.83 (95% ci: 1.18–2.87). the absence of nephropathy hr 0.50 (95% ci: 0.25–1.00), non-cardiovascular disease hr 0.45 (95% ci: 0.28–0.74), no human immunodeficiency virus (hiv) hr 0.49 (0.43 [95% ci: 0.26–0.90]) and absence of other comorbid hr 0.42 (95% ci: 0.26–0.67) reduced the risk mortality. patients at rural nmah hospital had a lower risk of death, with an hr of 0.38 (95% ci: 0.18–0.83; table 3). table 3: factors associated with 3-year survival experiences, cox regression model. discussion we found high 3-year mortality rate among diabetic patients with leas. similar mortality rates were reported in other studies (beeson et al. 2023; gök et al. 2016), which found high 5-year mortality rates following lea (beeson et al. 2023; gök et al. 2016). several studies compared diabetic-related complications between urban and rural diabetic populations (akinlotan et al. 2021; o’connor & wellenius 2012; tai et al. 2020). some studies compared the survival of diabetic patients and non-diabetic patients (eliasson et al. 2011; tayek 2012). our findings are contradictory to the results from studies in australia and in the united states, which indicated that people living in rural areas had double the incidence of dm and were highly likely to have poor health outcomes and mortality (andrus et al. 2004; rural, regional and remote health a study on mortality (2nd edition) phillips 2007). however, we also found that patients in the rural hospital had longer hospital stay compared to patients in the urban hospital. people living in rural areas often experience health disadvantages because of geographical barriers such as poor road infrastructure, lack of access to specialist care in local hospitals, poor self-management and lack of health education programmes (somasundram et al. 2019). the conflict in the study findings may be attributed to differences in geographical location and selection bias because of the limited number of patients from the rural hospital. not surprisingly, high blood glucose and major amputation were significantly associated with higher risk of mortality. patients free of comorbidities had a lower risk of mortality. we found a clinically significant reduction in mortality rate of 23% although not statistically significant among patients with no previous amputations than those with a previous amputation. uncontrolled hba1c have been associated with poor wound healing and poor surgical outcomes, high incidence of re-amputation and death (nayak & kirketerp-møller 2016). patients without nephropathy had reduced risk of mortality compared to those with a nephropathy. microvascular complications of dm are long-term high blood glucose conditions that affect the small blood vessels, resulting in neuropathy, retinopathy and nephropathy (lavery et al. 2010). previous studies have shown that the prevalence of nephropathy is high in diabetic patients residing in rural areas (chireshe, manyangadze & naidoo 2024). the risk of mortality was lower among hiv-negative patients. even with improvements of antiretroviral treatments in people living with hiv, the presence of diabetes and hiv greatly increases the risk of cardiovascular disease and mortality (chireshe et al. 2024). this suggests that healthcare providers should closely monitor people living with hiv and diabetes and other comorbidities that increase mortality. major amputation increased patient’s risk of mortality. perioperative mortality is largely influenced by the level of the amputation. a higher mortality rate has been shown for above knee amputation compared to below knee amputation. poor survival rates have been linked to factors such as ageing, multiple comorbidities, above knee amputations, post-operative amputation and post-amputation mobility and ambulation (kristensen et al. 2012). diabetic patients with major amputation are a high-risk population that require close monitoring and specialised care. study limitations the comparison of survival distribution between the rural nmah and urban livingstone hospital should be interpreted with caution because of a small number of patient’s medical files that were available in the rural hospital. we were cautious on drawing a definite conclusion on this comparison. rural hospitals have poor infrastructure and lack specialised care services and we therefore expected high mortality rates in the rural hospital. the small number of patient’s medical files in the rural hospital may have contributed to the unexpected study findings. incomplete data on comorbidities in the medical files and an unknown number of medical files that were at a storage space away from the hospital site we could not access limited the number of patients included in the study at the rural nmah hospital, and this may have introduced selection bias. this study used data collected retrospectively, bias limiting the number of variables to test association with mortality. study findings may not be generalised to other settings. more studies comparing survival experiences between rural and urban patients with diabetic-related leas are needed. conclusion the study compared survival rates and factors associated with 3-year mortality in patients with diabetic-related leas between livingstone urban hospital and nmah. establishing multidisciplinary care teams for patients with diabetic-related leas and other comorbidities and aggressive monitoring and management of blood glucose and comorbidities may reduce the risk of mortality. acknowledgements this article is partially based on the author’s thesis entitled ‘survival rate and factors associated with diabetic related lower extremity amputations between a rural and urban hospital in eastern cape province, south africa’, towards the degree of master of science in clinical epidemiology in the division of epidemiology and biostatistics, stellenbosch university, south africa on 12 december 2024, with supervisors dr moleen zunza and prof alfred musekiwa. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.s.m. and m.z. conceptualised the idea. a.s.m., m.z. and a.m. analysed the data, and a.s.m. and m.z. wrote the first draft. m.z. and a.m. edited the manuscript. all authors read and approved the final version of the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability raw data were generated at livingstone hospital and nelson mandela academic hospital. data will be made available upon request through the study supervisor dr moleen zunza, though all conditions stated in the stellenbosch university data sharing policy must be adhered to. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references akinlotan, m.a., primm, k., bolin, j.n., cheres, a.l.f., lee, j.s., callaghan, t. et al., 2021, ‘racial, rural, and regional disparities in diabetes-related lower-extremity amputation rates, 2009–2017’, diabetes care 44(9), 2053–2060. https://doi.org/10.2337/dc20-3135 andrus, m.r., kelley, k.w., murphey, l.m. & 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metabolism and diabetes of south africa 24(1), 32–36. https://doi.org/10.1080/16089677.2018.1550956 tai, s.y., he, j.s., kuo, c.t. & kawachi, i., 2020, ‘urban–rural disparities in the incidence of diabetes-related complications in taiwan: a propensity score matching analysis’, journal of clinical medicine 9(9), 1–12. https://doi.org/10.3390/jcm9093012 tayek, c.j., 2012, ‘diabetes patients and non-diabetic patients intensive care unit and hospital mortality risks associated with sepsis’, world journal of diabetes 3(2), 29. https://doi.org/10.4239/wjd.v3.i2.29 wiessman, m.p., liberty, i.f., wilkof segev, r., katz, t., tailakh, m.a. & novack, v., 2015, ‘clinical characteristics and survival of patients with diabetes mellitus following non-traumatic lower extremity amputation’, israel medical association journal 17(3), 145–149. abstract introduction perspectives on access to and use of assistive technology for disabilities why is assistive technology important for students with learning disabilities? theoretical framework: understanding assistive technology within the capability approach research methods and design findings and discussion conclusion acknowledgements references about the author(s) ndakaitei manase college of education, institute for open and distance learning, university of south africa, pretoria, south africa citation manase, n., 2023, ‘self-devised assistive techniques by university students with learning disabilities’, african journal of disability 12(0), a1106. https://doi.org/10.4102/ajod.v12i0.1106 original research self-devised assistive techniques by university students with learning disabilities ndakaitei manase received: 30 june 2022; accepted: 10 oct. 2022; published: 27 jan. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: access to assistive technology for disabilities is limited in low-resource settings. therefore, existing research focuses on accessibility challenges. this article focuses on how students with learning disabilities manage learning in the absence of assistive technology, a subject that receives less scholarly attention. objectives: this article aims to provide insights on how students with learning disabilities manage learning in the face of limited access to assistive technology. it explores conversion factors that influence access to assistive technology. method: this qualitative study used semistructured interviews to collect data from students with learning disabilities and respective university staff members who were recruited using convenience and snowballing techniques. data were analysed thematically and supported by thick descriptions of experiences. results: this study established that students have limited access to assistive technology, and they manage learning through self-devised means that are more socially than technologically or scientifically inspired such as self-affirmation, animal therapy, family support and prayer. conversion factors, which affect ability by either enabling or constraining access to assistive technology, were identified at personal and institutional or environmental levels. conclusion: the article concludes that even though students with learning disabilities devise unconventional assistive ways to manage learning, failure to access assistive technology is a capability deprivation that promotes inequalities. contribution: this article provides insights that shift perspectives that students with disabilities are passive recipients of support; rather, they can be active agents who innovate nontechnological ways to manage learning in the absence of assistive technology. keywords: assistive technology; low-resource settings; learning disabilities; agency; conversion factors; coping strategies. introduction people with disabilities often require augmentation to their functioning, considering that disability results from limited interaction between individuals with a health condition with personal and environmental factors (world health organization 2022). the international classification of functioning (icf) framework, from which this understanding of disability is derived, notes that the body can be limited in performing meaningful activities because of an impairment and the demands of the external environment. assistive technology systems, which the world health organization’s global cooperation on assistive technology defines as ‘the development and application of organised knowledge, skills, procedures, and policies relevant to the provision, use, and assessment of assistive products’ (khasnabis, mirza & maclachlan 2015) can improve the participation of people with disabilities. assistive products are: [a]ny product (including devices, equipment, instruments, and software), either specially designed and produced or generally available, whose primary purpose is to maintain or improve an individual’s functioning and independence and thereby promote their wellbeing. (p. 2229) such understandings of disability and assistive technology are both medically and socially framed to stress the role of the body and the external environment in limiting participation. as such, this conceptualisation stresses the fact that, in securing assistive technology, focus should not only be given to what the body cannot do or struggles to do but also how the external environment influences what a person can do. this article adopts the term assistive technology to refer to both assistive products and their application following the (2018) south african strategic framework on disability for post-school education and training that considers assistive technology ‘an umbrella term that includes assistive, adaptive and rehabilitative devices and services for persons with disabilities, which enable persons with disabilities and learning differences to attain independence’ (department of higher education and training [dhet] 2018:vii). this article further recognises the purpose of assistive technology as that of improving performance, productivity and independence while promoting students’ academic and general well-being. accordingly, assistive technology comprises external products that students with disabilities require to minimise the challenges they face in meeting their cognitive, perceptive, social and physical needs for them to fully display their potential and be successful in their academic endeavours. most importantly, assistive technology is useful in augmenting instructional arrangements, student engagement and student–teacher interaction for students with learning disabilities who face inflexible curricula, pedagogy, assessment and outcomes and learn under strenuous physical and psychological environments. the basic understanding is that learning disabilities can limit students’ potential, and therefore, they need supportive means to enhance their abilities. the aim of this article is to provide insights on how students with learning disabilities manage learning amidst challenges in accessing assistive technology. this study thus examines how students experience learning, explores students’ access to assistive technology and analyses students’ coping strategies. the research questions are theoretically framed within the capability approach as follows: ‘how do students with learning disabilities exercise agency to manage learning in the absence of assistive technology?’ and ‘what and how do conversion factors influence students with learning disabilities’ access and use of assistive technology?’ perspectives on access to and use of assistive technology for disabilities existing knowledge shows that not everyone who needs assistive technology can access it, highlighting discrepancies between need and provision, which maclachlan et al. (2018) view as rooted in social, demographic and structural factors. the world health organization (2021:1) highlights that only 1 in 10 people in need of assistive technology has access to it, with access more limited in low-resource contexts. eide and øderud (2009:152) allude to this fact by noting that only 5% – 15% of people who require assistive products in low-resource settings have access to them. the challenges are heightened for students with disabilities because many universities struggle to provide suitable assistive technology (ndlovu 2021:10). this article acknowledges accessibility challenges and broadens discussions to include the alternative means that students with learning disabilities adopt to manage learning without proper assistive technology. the main argument in this article is that in the absence of assistive technology, students exercise agency to achieve multidimensional success despite various constraining factors. access to assistive technology is more limited for those with invisible disabilities such as learning disabilities because they are given little attention in rehabilitation programmes. assistive technology is historically associated with physical and sensory disabilities (boot et al. 2018:901). high-end specialised assistive technology that is specifically designed for people with learning disabilities is not accessible to many who should benefit from them (fichten et al. 2020:29). various factors are attributed to the low use of assistive technology for disabilities. these include limited availability of specialised assistive technology, a lack of funding to purchase devices and suitable software (ndlovu 2021:10), a lack of knowledge on suitable assistive technology (coleman et al. 2015:655) and a lack of training on the use of assistive technology (judge & simms 2009:34). relatedly, in harniss, samant raja and matter’s (2015) special issue that focuses on access to and service delivery of assistive technology in resource-limited contexts, authors corroborate the fact that there are challenges in the provision of assistive technology owing to limited funds, weak policies and legislation, poor distribution and shortage of relevant expertise. hence, most challenges are systemic and beyond an individual’s control. most higher education institutions in south africa provide limited assistive technology and other support services to students with disabilities (vincent & chiwandire 2019:1). the south african apartheid regime that ended in 1994 contributed to some of these challenges because it limited funding to institutions that are now referred to as historically black universities. the regime’s discriminatory policies restricted budgets and expenditure for institutions of learning on the basis of colour, resulting in the unequal distribution of educational facilities and learning resources (motala 2006:85; sayed & kanjee 2013:7). these provisioning disparities extended to special schools for students with disabilities that catered for nonwhite children. the schools were under-resourced and offered inferior education (department of education [doe] 2001:9). the provisioning of assistive technology was thus affected by racially based budgetary restrictions, leaving many students with disabilities with unmet academic needs. in addressing these inequalities, funding arrangements improved post-1994 when the democratic government encouraged mainstreaming students with disabilities and introduced various bursary schemes for post-schooling, including the (1999) national student financial aid scheme (nsfas) for students from poorer backgrounds. the bursary also assists students with disabilities to purchase assistive devices, tuition, accommodation and meet other needs (nsfas 2019:1). however, the bursary is not utilised by all deserving students because the selection criteria are limiting. students qualify for the nsfas disability grant based on low household income, only first-time undergraduates are eligible, and the grant does not cater for students at private institutions (nsfas 2019:1). the criteria exclude most students from middle and upper-class backgrounds, those who get diagnosed after joining the university or those who register a disability way into the course. even though the government effected considerable developmental programmes, including student grants, most universities still have limited infrastructure and resources owing to the inequalities of the apartheid regime. access to assistive technology is thus limited by systemic factors that are beyond an individual’s control. financial constraints at a household or individual level also contribute to barriers in using assistive technology. ruswa and gore (2021:6) established that most higher education students in south africa experience different deprivations that range from a lack of basic needs to resources for learning. various factors contribute to such deprivation including the fact that 76% of the south african population lives in poverty and the unemployment rate is currently pegged at 34.4% (statistics south africa [stats. sa] 2021:7). the popular #feesmustfall protests in south africa (moloi, makgoba & ogutu miruka 2017:212), where students were fighting against rising tuition fees and low government funding, reflect students’ financial woes. high university drop-out rates in south africa are noted among students from low-income households who fail to secure funding (machika & johnson 2015:168). financial constraint is thus a major factor that interferes with students’ ability to acquire educational resources such as assistive technology that enhances success in higher education. students from low-income households are therefore likely to be deprived of the digital capital that is instrumental in making them technologically apt. literature also shows that psychosocial factors play a role in the use of assistive technology. writing in the context of physical disabilities, hemmingsson, lidstrom and nygård (2009:468) noted that some assistive technology can be markers of deviance among students. hemmingsson and colleagues established that some students with disabilities abandon assistive technology because it exposes them as different from others. desmond et al. (2018:439) stress the need for culturally and context-sensitive assistive technology that can meet one’s goals while accounting for the social environment in which one operates. as such, the culture on supporting students with disabilities is worth considering when purchasing assistive technology. its use should be understood by both students with and without disabilities so that support services for students with disabilities should not appear as unfair advantage (mullins & preyde 2013:155); neither should it expose students as different. bad experiences from negative attitudes towards students’ use of assistive technology can affect the utilisation of assistive technology, especially where learning disabilities are misconceived as being intellectually inferior. hence, inasmuch as assistive technology is functional, there are psychosocial factors that need to be accounted for to avoid the rejection of assistive technology. why is assistive technology important for students with learning disabilities? assistive technology is important to circumvent challenges that interfere with students with learning disabilities’ satisfactory undertaking of academic tasks. the demands of higher education, including reading high volumes of learning materials, excessive writing, long and busy lectures, conceptualising, executing and writing projects and many more, require assistive technology for students to cope (lyner-cleophas 2019:2). learning disabilities negatively affect how one processes, transmits, stores, receives and retrieves information, posing the risk of the underdevelopment of skills that are necessary to undertake and succeed in formal education. dyslexia, which mainly causes difficulties in understanding text (hulme & snowling 2016:731) and attention deficit hyperactivity disorder (adhd), which mainly affects executive functioning (brown 2009:37), are represented the most among this study’s participants and therefore get more attention in this article. the symptoms of dyslexia and adhd can be comorbid (lonergan et al. 2019:725), and they include, among others, a slow reading and writing pace, low reading comprehension capacity because of poor word recognition and decoding, slow articulation of tasks, poor organisation skills, forgetfulness, attention difficulties, hyperactivity, impulsivity, anxiety, difficulty and poor language output that include stammering and mind blanking (hulme & snowling 2016:731; khasawneh 2021:221; lonergan et al. 2019). challenges with executive functioning that most students with adhd experience can affect memory, causing one to struggle to prioritise and complete tasks timeously (weyandt & dupaul 2008:314). it also causes emotional distress that creates difficulties in coping with day-to-day demands (weyandt & dupaul 2008:314). the underdeveloped academic skills and the associated challenges can negatively affect academic performance and contribute to emotional distress. against this background, there is a need for students with learning disabilities to use assistive technology that eases the management of disability, studies and life in general. this article maintains that assistive technology is good for augmenting students’ strengths and potentials that might be limited by a learning disability, as it offers alternative modes of performing tasks that tend to bridge the gap between ability and the demands of the environment. this stance is supported by floyd and judge (2012:49), who noted that assistive technology improves reading, comprehension and the retention of information that also contributes to increased academic task performance. speech-to-text software is useful for students with a slow writing pace, as they can dictate rather than write down text. in a systematic review by shadiev et al. (2014:75) on how speech-to-text recognition can enhance learning, it was established that this technology improves comprehension, completion of homework and exam preparations. the programme is equally helpful for those with dyslexia who experience difficulties in expressing their thoughts on paper (khan 2020:3). learning disabilities can affect the coordination between what one thinks and what they end up writing down (hoover, kubina & mason 2012:33), such that one can have the correct answers in mind while the written script contains illogical responses. speech recognition software is therefore useful because it captures students’ thoughts and allows them to produce the kind of work that portrays their capabilities. in addition, speech synthesisers are useful for students with slow reading pace, perception challenges and poor comprehension that emanate from decoding challenges. the text-to-speech software can improve reading and comprehension. this technology enables students to get audible versions of on-screen text by matching written text with preprogrammed audio-recorded vocabulary. classmate reader (humanware group, drummondville, quebec, canada) and kurzweil 3000™ (kurzweil education, dallas, texas, united states) are examples of text reading programmes that enable students to listen to an audio version of text and thus circumvent specific phoneme–grapheme decoding deficits (floyd & judge 2012:50–51). screen readers read out text on the screen and have visual tools that highlight each word as it is read so that a student can hear and see what is read. the software uses speech synthesisers that convert scanned written documents into audible text where the scanned document can be read back to the user to reduce reading, comprehension or even sight challenges (southwell & slater 2013:35). the voice component in this software is useful for those with poor word recognition to listen with a better grasp, as noted by floyd and judge (2012:49) that reading assistive technology improves comprehension and the retention of information that also contributes to increased academic task performance. students can also benefit from the read-aloud function that is available on most documents that are saved in the portable document format. most university libraries now have audio-formatted electronic learning resources. however, some old documents are not compatible with digital formatting, making them inaccessible for learning (fichten et al. 2020:32). furthermore, there is a need for technology that aids planning and organising, as learning disabilities can affect executive functioning. appointments and notes can be computerised to remind students of important information such as names, dates and times for exams, appointments and assignment deadlines. personal data managers and free-form databases can allow students to store and retrieve information with ease and thus compensate for organising challenges (adebisi, liman & longpoe 2015:17). students can also benefit from mind-mapping technology, particularly those who struggle with the planning of assignments. inspiration (techedology ltd, pewsey, united kingdom) is one concept-making software that provides students with a framework to brainstorm, organise ideas, generate themes and formulate a workable storyline or outline that is useful when writing an assignment (forgrave 2002:124). students randomly brainstorm ideas on their assignments and input them in this organisational software that automatically rearranges them to create a logical outline that is useful in improving the quality of written assignments (forgrave 2002:124). these prewriting organisers serve as artificial and external working memory systems and are viewed as more effective than traditional ways (shah & naqeeb 2020:31) because they provide clues on how to organise information and improve the coherence of ideas when writing. poor spelling skills can be alleviated by spell checkers that are available on most word processors, where incorrectly spelt words can be highlighted and options for correct spellings are offered (adebisi et al. 2015:16). word processors also have a proof-reading facility that corrects grammar or predicts words while someone is typing a sentence (adebisi et al. 2015:16). this is helpful for students to produce presentable work and it eliminates dependence on scribes or human spell checkers. students can thus take shorter time to complete tasks and with less effort than without assistive technology. theoretical framework: understanding assistive technology within the capability approach amartya sen’s capability approach frames theoretical discussions in this article, using the concepts capability, conversion factors and agency. the capability approach is a normative framework for human development that stresses that people should have actual opportunities for them to function in ways that support the achievement of the things they have reason(s) to value, given their circumstances (sen 2014:527). capability is the central concept of the capability approach, and it refers to one’s freedom or a set of real opportunities to promote or achieve valued doings and beings (alkire 2005:121). assistive technology can be regarded as a capability that enhances students’ chances of succeeding in higher education by improving functioning. failure to avail the necessary technology is an inequality that contributes to the marginalisation of students with disabilities. assistive technology is recognised for its generative (capability input) and transformative (facilitates achievements) capacity (haenssgen & ariana 2018:99). inasmuch as technology is capabilityor freedom-enhancing, its instrumental value in improving functioning and enabling better performance is subject to different conversion factors such as computer literacy, the social norms, technological environment and infrastructure, which ahmed (2012:161) observes to be limiting in many developing countries. in this article, focus is given to conversion factors that interfere with the use of assistive technology and the achievement of academic goals. conversion factors stand between a resource, ability and achievement, meaning that they influence (positively or negatively) how students access and use assistive technology. existing literature notes that the role of technology can be limited by personal factors, where people fear to adopt it (ahmed 2012:161); by social factors where, for example, societal norms prohibit women to communicate with men on a mobile phone (haenssgen & ariana 2018:108) or where women cannot benefit fully from digitally-projected voice-based messages because they must leave the front seats to men (oosterlaken, grimshaw & janssen 2021:118); or by environmental factors, where governments control how assistive technology programmes should be implemented (oosterlaken et al. 2021:118). therefore, conversion factors are represented where people have limitations in benefiting from a resource or opportunity. the analysis of students’ experiences of assistive technology extends to their agentic role in managing learning. sen (1999:19) views an agent as ‘someone who acts and brings about change, and whose achievements can be judged in terms of her [sic] own values and objectives’. an agent therefore takes a participative role and actively works towards achieving what is valued. students’ agentic role is analysed based on what they do in pursuing valued academic goals considering barriers to accessing appropriate assistive technology. the strength of the capability approach lies in how it propels social justice and accounts for the process leading to achievements (grunfeld, hak & pin 2011:152). the capability approach stipulates that judgements on how well a person is doing cannot be solely based on availed resources or achievements but on the process leading to achievements, because there are conversion factors that interfere with the ability to achieve. therefore, judgements on the well-being of students cannot be entirely based on the availability of the disability unit (du) and the grades they achieve but also on the learning experience. this holistic approach to evaluating students’ experiences provides a broader informational base in the designing of educational and student support policies. however, the capability approach is just an evaluation approach that does not provide prescriptions of what to do but offers guidance by characterising capabilities and inequalities. the capability approach thus lacks operationalisation and is weak in prescribing ‘feasible procedures of application’ (gasper 2017:244). it requires complementary theories to apply it in specific contexts. therefore, the findings of this article should not be regarded as prescriptive but rather explanatory. research methods and design this study uses perspectives of 15 university students, eight lecturers and five staff members from the du and the centre for teaching and learning at a public university in south africa. all the students were registered and were on the du’s database as having learning disabilities and receiving disability support. the main aim of the study is to explore how students with learning disabilities manage learning. therefore, students were asked to narrate their university experiences in relation to the challenges they face and opportunities that support learning. students were asked questions on the nature of disability they have, the kind of support they receive from the university and how they manage learning. follow-up questions examined if students use any assistive technology, with further probing leading to examining the coping strategies they adopt. the main question directed at lecturers sought to examine their pedagogical practices, asking if they consider learning disabilities in teaching and assessing students with learning disabilities. follow-up questions sought to understand if and how the du engages them to meet the teaching and learning needs of students with disabilities. staff members from the du were asked about the university’s policy position on teaching, learning and supporting students with disabilities (general and specific) – the services they offer regarding disabilities, the challenges or limitations they face, challenges that are reported by students and lecturers and the measures taken to address them. the main question asked to the members from the centre for teaching and learning was focused on if and how they work with the du to ensure that students with disabilities are not disadvantaged in their academic endeavours. the study adopts a narrative inquiry research design, which is a form of qualitative inquiry that focuses on experiences of a specific phenomenon (polkinghorne 1995:5) – university learning with a learning disability in this case. participants were purposively selected using convenience and snowballing techniques since students with learning disabilities were hard to reach. the university’s du facilitated access to participants by allowing the researcher to approach students as they leave the facility, as students occasionally visit the unit for different purposes (convenience sampling). students were asked to approach other eligible participants and referred me to them once they agreed to participate in the study (snowball sampling). the participation criterion was stressed that eligible participants should be registered students at that particular university who had registered a learning disability. participants agreed to participate in the study by signing a written informed consent form after all the details about the study were explained and clarified to them. pseudonyms are used to identify students in all the publications that use data from these participants so that their actual identity remains hidden in respect of the confidentiality clause in this study’s information sheet and consent form. lecturers were approached individually either via e-mail or in person. their actual identities are also hidden as part of the confidentiality and anonymity considerations. members of staff who offer student support were identified according to the positions they hold. this qualitative study used audio-recorded face-to-face semistructured interviews as a tool to collect students’ narratives on how they experience university with a learning disability, lecturers’ perspectives on teaching students with learning disabilities and support staff’s insights on how the university caters for the needs of students with disabilities. data were collected in 2019 with telephonic coronavirus disease 2019 (covid-19)-related follow-up interviews in 2020. interviews with all participants were held in english, and there were no communication barriers since the study is situated within the higher education context where english is the primary medium of instruction. all interviews were transcribed and analysed manually by the researcher. the tape recorder used to record the interviews was kept safe during the data collection and analysis to prevent unnecessary data exposure to unintended audiences. the audio files were deleted from the tape recorder after all the interviews were transcribed and e-mailed to me. interview transcriptions were saved in a password-protected zip folder on my laptop. the researcher is the only individual with access to participants and interview details. data analysis thematic data analysis was adopted to make sense of students’ experiences of accessing and using assistive technology. inductive and deductive reasoning were applied to come up with themes and weave them with existing literature and theoretical concepts that frame the study. the analytic process involved reading the transcribed data, generating codes from the transcribed interviews, manually developing themes, interpreting themes within the existing knowledge and theoretical framework and presenting the findings descriptively. meanings from the collected data were inductively derived by categorising excerpts of transcribed narratives that are associated with accessing and using assistive technology. critical engagement with the data led to the generation of codes, where parts of the interviews were systematically colour-coded, matching sections with similar meanings. data were then categorised according to technology accessibility, associated challenges and coping techniques. further analysis involved matching which data fits or not under the capability approach concepts guiding the study, which are conversion factors and agency. from this deductive analytic process, personal, institutional and social conversion factors were identified. data excerpts that represent students’ agency were also identified. even though students had subjective assistive technology experiences, there are themes that were represented enough to be considered main findings. for example, the fact that almost all the participants indicated that they do not make use of assistive technology specific to alleviating the challenges imposed by learning disabilities qualified as a main finding. however, unique individual cases helped to uncover the essence of experiencing university with a learning disability since the study adopts a narrative framework that does not prioritise finding commonalities or quantifying experiences but deep meanings of lived experiences (thorne 2000:68). as such, most findings are not presented numerically but descriptively. ethical considerations ethical clearance was obtained from the university of the free state’s general and human research ethics committee (ref. no. ufs-hsd2019/0038/2903/2507). findings and discussion the study established that students’ access to and use of assistive technology is mainly hindered by financial constraints at the national, institutional and individual or household levels. it is also noted that some students do not seek assistive technology for learning disabilities because of the reasonable accommodations they receive during examinations. the findings expose students’ marginalisation through undiversified learning modes and poorly presented learning content that force students to adapt unconventional ways of managing learning such as self-affirmation, family support, animal therapy and prayer. these findings reflect that students are active agents in their studies, where agency is demonstrated through devising nonor low-tech ways of coping with learning in the absence of high-tech assistive technology. accessibility challenges are analysed within the capability approach as conversion factors. the identified conversion factors are personal (socio-economic status) and environmental (funding, low awareness and lack of inclusive teaching skills). ‘disabled’ access to assistive technology for university students with learning disabilities even though the phd study (manase 2020) from which this article is drawn did not directly focus on assistive technology, the researcher was interested in exploring how students cope with learning given the fact that they have learning disabilities. further probing on this subject provided insights on whether or what students use as assistive technology. from students’ narrated accounts, and consistent with fichten et al.’s (2020:29) findings, it was established that not many of the students use high-tech assistive technology, particularly that which is specifically designed to address the challenges posed by learning disabilities. assistive technology can be considered a capability input with both instrumental and intrinsic value for its contribution towards students’ independence, improved academic performance and good progress and ultimately well-being. therefore, limited or lack of access to the necessary assistive technology reflects a capability deprivation that constrains functionings or achievements and perpetuates inequalities in higher education. to note here is the fact that the university under study had not implemented its own disability policy at the point of conducting this study. the draft policy that was availed to the researcher had no definitions of assistive technology and disability. rather, it defined and explained impairments within the medical model of disability. such positions can contribute to the accessibility challenges faced by students with invisible disabilities (learning disabilities included), especially where impairment is strongly linked to loss of physical function. most telling from students’ accounts are remarks that they never considered sourcing assistive technology since they benefit from adjusted examination conditions at the university. students in this study are separated from others to write tests and examinations at a smaller and noise-proof venue. other adjusted exam conditions include extra time, scribes who read and write down students’ responses, spell checkers and individual cubicles for those who use scribes or those who experience severe symptoms of a disability. all students are from departments that require them to produce a hand-written exam script. they are not allowed to use any computer-based assistive technology during exams. the interview with the head of the du revealed that the university has limited financial resources, and there are disabilities that are not catered for fully because of inadequate assistive technology, as noted in this excerpt that: ‘we are committed to accommodating our students with disabilities, but we sometimes encounter financial limitations. right now, we are planning to get reading pens for our students with reading challenges, but we do not have enough funds for that … all this need financial resources that we currently do not have.’ (head of du) as the above quote suggests, lack of institutional funding can impede the provision of assistive technology to students with learning disabilities. this is consistent with lyner-cleopas (2019) and vincent and chiwandire’s (2019) assertions that there are funding challenges in south africa and dus struggle to meet students’ needs. a lack of a clear institutional policy position that delineates disability and assistive technology can be attributed to the university’s limited provision of assistive technology for other disabilities such as dyslexia that requires reading pens, as mentioned by the head of the du. financial constraints were also cited by students as a hindrance to accessing assistive technology, as illustrated in this excerpt that represents most of the students’ position: ‘it would be nice if i had something to help me with reading. i tend to be very slow at it … but those things are very expensive and some of the licenses need to be renewed now and then.’ (tess, 3rd-year female student) the sentiments noted above support views that most assistive technology is expensive and out of reach to many people in developing countries, as suggested by eide and øderud (2009:152). an effective reading pen can cost around r10 000, and one needs nothing less than r1500 to get an ordinary one. affordability is a factor in accessing assistive technology. only one student got a tablet through nsfas that he mainly uses to type notes because he does not write well. the rest of the students reported that they were not aware of the nsfas disability grant that can assist with the purchase of assistive technology. this reveals a lack of awareness and information on disability support services that can promote access to assistive technology. although all the students have access to computers (personal or university’s), only one has access to reading software that is specifically designed to alleviate the challenges posed by dyslexia. the student reported that he is fortunate that his parents secured the assistive software to aid reading and comprehension while studying. the assistive reading software provides independence and it enhances the student’s reading and comprehension skills. the usefulness of the reading software is demonstrated in how the students do not depend on someone else to read for him as is the norm when writing examinations. the student, who was diagnosed with dyslexia while in primary school pointed out that his ‘privileged’ background enabled him to have such personal arrangements, spotlighting a correlation between access to assistive technology and socio-economic status. another student with misophonia (a sound disorder) who is affected by any form of sound, uses personally sourced sound-blocking earphones during lectures. the earphones help her to follow the projected slides attentively since she cannot hear the lecturer’s voice. the student revealed that she puts extra effort to try and understand what is being taught because many lecturers use slides that are difficult to follow. other students complain of how they ‘take little’ from the lectures because of the poor instructional delivery. this reflects the marginalisation of students through a lack of suitable and effective inclusive assistive technology in the form of curriculum aids. the same concern was raised by students in their experiences of online and remote learning during the covid-19 pandemic, where most of them were digitally excluded through inaccessible and unusable learning content and resources. students complained of cluttered powerpoint slides and limited presentation of learning materials. it is problematic where diversity is not considered in instructional design and learning environments. accessible and useable learning content benefits many students with diverse needs and promotes the equalisation of opportunities for people with disabilities (united nations 1994:1). students’ coping strategies to manage learning student’s narratives reveal that they manage learning through self-initiated coping strategies such as self-affirmation, family support, animal therapy and prayer. students admitted that having a learning disability and learning without supportive technologies is challenging, to the extent of affecting both their academic and psychological well-being. what frustrates students the most is that their abilities are not fully reflected in the results they get. one major concern is that even though the adjusted conditions enable them to write examinations well, they struggle to learn and study for exams without the much-needed technological support. the heightened risk of failing induces anxiety and emotional distress that affect students’ class participation and exam preparations. therefore, most students adopt self-affirmation to overcome emotional challenges that emanate mainly from the difficulties encountered in trying to meet their valued goal of progressing well academically. one student with dyslexia practises self-talk and affirms that, ‘i am able, i am not a quitter and i have come this far because i can do this’. another participant, who acknowledged that she ‘struggles to understand lectures because they are fast-paced’ such that she ‘cannot do [academic] tasks effectively and as fast as others’, tells herself that: ‘i am normal. i understand everything even if i can’t get it now … if someone can do tasks in 30 minutes, it’s still fine if i do it in 45 minutes as long as i get the job done.’ (brenda, honour’s female student) self-affirmation is a survival tactic people adopt to deal with threats (sherman 2013:834). in this study, students practise self-affirmation to manage threats to academic success. even though brenda in the cited quote above tries to be positive, her narrative highlights the difficulties posed by an inherent health condition and exacerbated by teaching practices that are not inclusive. most students struggle in conventional lectures that are often administered under tight timetables and delivered with no conscious consideration for learning disabilities, as illustrated in this interview excerpt from a lecturer: ‘i never intentionally consider any special needs when teaching. i don’t think i need to adapt to any need because i don’t know what need is there to accommodate.’ (male, lecturer 4) the sentiments expressed by the lecturer in the quote above were common among the lecturers who reported that they are not made aware of any disabilities to consider when teaching. in addition, lecturers complained that they are not capacitated to teach in ways that consider learning disabilities. these findings reveal that students are taught and treated as a homogenous group, yet they are diverse. for example, most students with dyslexia decode and comprehend information slowly (snowling, hulme & nation 2020:503), making it difficult to acquire discipline knowledge or contribute meaningfully to debates during lectures if instruction is not diversified. one student puts it clearly that ‘[m]ost of the time lecturers rush information through’, such that ‘i am [physically] with the lecturer, but i have lost him’. nonetheless, practising self-talk or self-affirmation demonstrates agency that promotes emotional well-being to avoid giving up and dropping out of university. family social support is another form of managing learning that students adopt. love, care, acceptance and understanding were reported by students as valued kinds of support from their families, because some of these students find it very challenging to manage a disability, their everyday life and studies independently. one student who admitted that ‘i struggle to learn and i wanted to quit university and pursue archery’ appreciates how his mother encourages him to get a degree while pursuing his passion. family members also send reminders for exam dates and times, which students value as an important form of support in the absence of effective assistive technology to support planning and memory. animal therapy appeared as another form of support that students adopt to cope with the demands of university work and emotions. students use their pets, particularly dogs, as an audience when practising oral activities. to these students, dogs are not judgemental, so they can stammer, mispronounce words or have mind blanking moments without being teased or developing feelings of incompetency, which students reported as common experiences when presenting in front of their peers. in addition, those who experience periodic emotional difficulties depend on the companion of their pets to de-stress, as illustrated below: ‘i always call my dog my therapist. he is my natural support system. a dog doesn’t judge you the way people do. if i had a bad day here at the university, i grab my poor jack russell, hold it by its stomach, put it on my bed, close the door, sit there and then i start telling him all the horrible stuff that happened to me. so, my dog will be sitting there, coming closer to me if it sees that i am upset, lies next to me or lies on top of me because he is a small dog. he’s just supportive. i feel better afterwards.’ (cici, 3rd-year female student) emotional disorders are common among people with learning disabilities (nelson & liebel 2018:44), of which depression was a common condition that affects students in this study. students’ interaction with pets acts as a useful support system, and it has been proved to be beneficial where relationships with peers are threatened by fear or experiences of social ridicule (keefer, landau & sullivan 2014:524). several students who identify themselves as christians reported that they pray for strength, contentment, security and victory to overcome the challenges they face in performing academic activities. one student reported that ‘[b]elieving that god can enable me to do anything, motivates me’. praying before an exam was cited as the most common practice by these participants. they trust the spiritual power to enable them to tackle academic tasks, knowing that they have no assistive technology to rely on during the exams. accordingly, students’ agentic role is demonstrated through these means of managing learning. in fact, except for one student who took six years to complete a four year degree, others’ academic progress is good, and many had successfully completed their studies at the point of writing this article. in summary, most students adopt nonconventional measures to manage learning in the face of limited access to high-tech assistive technology. conversion factors that influence the use of enabling technologies conversion factors are analysed in terms of their effects on ability to access assistive technology – enabling or constraining. this article identified personal and environmental or institutional conversion factors that influence access to assistive technology, and all of them are constraining. students’ socio-economic status, which creates individual financial constraints that contribute to the unaffordability of assistive technology, is a personal conversion factor that negatively influences access to suitable assistive technology. another personal conversion factor is students’ reluctance to seek information on assistive technology for learning disabilities because of the concessions they receive to write examinations under adjusted conditions. the identified environmental conversion factors include a lack of disability funding that ranges from limited access to the nsfas grant to institutional budgetary constraints that limit the purchase of assistive technology for disabilities. institutional conversion factors also include low awareness on assistive technology for learning disabilities, pedagogical practices that encompass lack of inclusive and diversified presentation of learning content, curriculum aids or instructional support. instructional aids are assistive to students who struggle to access learning material that is presented through conventional modes. failure to access or use assistive technology stands as a conversion factor with a diminishing effect on learning. learning environments that do not support meaningful learning disable students, as disability entails not only inherent health conditions but limiting environments too. conclusion assistive technology designed specifically for learning disabilities, although valuable, is accessed by few students. the university contributes largely to students’ accessibility challenges because it fails to provide the necessary assistive technology. failure to provide assistive technology is a capability deprivation that promotes inequalities that disadvantage students with disabilities. students’ learning opportunities and academic performance can be negatively affected; so is their independence, as some rely on others to produce an answer script for marking. poor access to technological assistive elements compels students to adopt more social forms of support, which reveal that students are not passive recipients of support services but can be active agents who innovate ways to successfully manage learning. even though the use of social means to manage learning is commendable, it reflects marginalisation that, if not critically assessed, may ‘paint’ students with learning disabilities as intellectually inferior. yet there is no strong basis to suggest that students with learning disabilities have low intellectual abilities. rather, students perform well under supportive conditions (sarid, meltzer & raveh 2020:6). therefore, universities should adopt teaching and disability models that account for students’ health conditions and the environment they operate in when designing policies. therefore, the study recommends sustainable financial resources at the national and institutional levels to offer students with disabilities appropriate assistive technology. the study further recommends information and awareness-raising campaigns on assistive technology, particularly for invisible disabilities. the university should increase efforts to capacitate lecturers with inclusive instructional design skills to accommodate diversity of all forms. further research should evaluate the effectiveness and sustainability of the nonconventional assistive ways of coping with learning for university students with learning disabilities. acknowledgements the contribution of participants in this research is greatly appreciated. a special thank you to prof. s. ngubane for her mentorship. the author would also want to thank dr o. mutanga for his comments on the manuscript. competing interests the author declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contributions n.m. is the sole author of this article. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability the data that support the findings of this study are not openly available due to the sensitive information about participants’ 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munjanja, eleanor a. hendricks received: 12 aug. 2024; accepted: 07 apr. 2025; published: 29 may 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: students with disabilities in higher education continue to face significant challenges, including infrastructural barriers and stigma, which hinder their full participation. although disability and student counselling units have been established, their effectiveness may be questionable. objectives: our study explored the perceptions of students with disabilities (swds) at selected higher education institutions (heis) in raymond mhlaba, eastern cape, regarding the effectiveness of institutional support systems in shaping their academic experiences. method: a qualitative approach was employed, using semi-structured interviews to gather data from 15 swds at selected institutions. data were thematically analysed. results: findings revealed that institutional support systems played a crucial role in assisting students by providing counselling, wheelchair-accessible residences, food parcels and motorised wheelchairs. however, some participants noted that some services, such as assistive technology and academic accommodations, were not well advertised to students by disability offices. consequently, only students who disclosed their disabilities accessed these services, while those who did not disclose remained unaware and unsupported. conclusion: despite the crucial role of institutional support systems, there is a significant gap between students’ awareness of and ability to access or use the services. strengthening communication and encouraging students to disclose their disabilities through efforts by administrators, disability services and faculty staff could improve access to support. contribution: our study contributes to the understanding of how heis can create inclusive environments that promote academic and social integration for swds. keywords: students with disabilities; higher education; institutional support systems; disability unit; student counselling unit. introduction the global discourse on inclusivity and accessibility in education has gained significant momentum in recent decades. more recently, there has been a determined effort globally to overcome the challenges faced by students with disabilities (swds) in higher education (he) by establishing disability units (dus) and student counselling units (scus) adapted to the requirements of swds, and south africa is no exception (mbuvha 2019). however, the efficacy of these support systems in shaping the experiences of swds is a significant problem, as the support systems in place are not effective enough to positively impact these students’ experiences (mbuvha 2019). despite the efforts of institutional support systems, challenges persist in ensuring equal access and opportunities for swds in higher education institutions (heis) in south africa (munjanja & hendricks 2024). limited funds, inadequate infrastructure and a lack of understanding about disability concerns are still important impediments that must be addressed (mutanga 2017). according to mbuvha (2019), the dus and scus seek to help swds get access to and participate in university life. this includes implementing reasonable accommodations and supporting swds to ensure their full involvement in academic, social and extracurricular activities and equal opportunities as their peers, which is in line with the united nations convention on the rights of persons with disabilities (uncrpd 2006), which was ratified in south africa in 2007. students with disabilities who may require support and accommodations include students who have hearing disabilities, visual disabilities, physical disabilities, health conditions (such as chronic illnesses), specific learning disabilities, intellectual disabilities, developmental disabilities or psychosocial disabilities. our study explores how effectively institutional support systems foster full participation and inclusion of swds, ensuring that swds have equal opportunities to engage in all aspects of university life, including academics, social activities and support services, without facing barriers or discrimination. through highlighting the strengths, weaknesses and areas for improvement within these systems, our study provides actionable insights that may help to guide policy changes and resource allocation, fostering a more inclusive and supportive environment for swds in heis (munjanja & hendricks 2024). south african heis have set up dus and scus to assist swds in academic pursuits (mantsha 2016). these dus are vital in providing services, including offering study materials in accessible formats such as braille, allowing additional time for examinations and arranging for sign language interpreters (nsanja gunda 2015). the dus and scus offer student accommodations, emotional support and counselling services, respectively, tailored to the needs of swds. grigal et al. (2018) noted that transitioning to he can be challenging and that scus provide a safe space for swds to voice their concerns and difficulties. therefore, these units strive to create an inclusive and accessible atmosphere that promotes both academic and personal success for swds. on the contrary, sims (2022) stated that dus are not independent institutions; instead, they are merged into other departments, such as student affairs or counselling, which can restrict their effectiveness in supporting swds as they often lack the autonomy to offer specialised services to swds. however, it is essential to recognise that some swds may choose not to seek counselling services. hartrey, denieffe and wells (2017) identify several reasons for this hesitation, such as a preference for privacy, concerns and personal beliefs about the stigma surrounding mental health counselling or psychological support. the effectiveness of the institutional support systems at selected heis in raymond mhlaba, eastern cape, south africa, in shaping the experiences of swds raises significant apprehensions among swds themselves, as well as he administrators, educators and policymakers. this is because swds are still facing challenges in heis in south africa, regardless of the support they receive from their institutional support systems (munjanja & hendricks 2024). mutanga (2017) highlights many impediments in he that contribute to this predicament, including unfavourable attitudes about disability, gaps in academic courses, physical difficulties (inaccessible buildings and inadequate transportation), a lack of appropriate support services, such as tutors and personal assistants, and unequal distribution of resources, where institutions may prioritise students without disabilities, leaving swds inadequately resourced. gaps arise in academic courses as there is a lack of specialised or adapted educational programmes for swds, which affects their learning opportunities. as a result of these impediments, many swds drop out of university, and others cannot complete their tertiary education (mutanga 2017). according to the 2021 south african statistics on the causes of student absenteeism from university, the leading factors were classified as follows: health concerns and impairments at 22.7%, poor academic performance at 21.2% and inability to pay tuition fees at 19.6% (stats sa 2021). these figures indicate that health issues and disabilities are a central contributor to university dropout rates in south africa. these data suggest that the efficacy of institutional support systems may be questionable, although there are notable contributions. our study aimed to explore how institutional support systems shape the experiences of swds at selected heis in raymond mhlaba, eastern cape, south africa. research methods and design study design a qualitative study with an exploratory research design underpinned by an interpretivist paradigm was conducted (dannels 2018) at two south african heis such as university of fort hare (ufh) and lovedale college tvet (lc) in raymond mhlaba local municipality, eastern cape. study population and sampling strategy we used purposive and snowball sampling methods to find and recruit potential participants (parker, scott & geddes 2019). fifteen participants aged 20–56 years were purposefully sampled. the first author initially approached the du of the university of fort hare and the student support office of lovedale college tvet (lc), which serves as du and scu. lovedale college does not have an independent du and scu; hence, they use the student support office to assist swds and those without disabilities in requesting access to swds listed in their registers who were willing to participate in our study. the du communicated the purpose and goals of our study to potential participants and provided them with the first author’s contact information. interested students could then contact the first author via email or phone to express their willingness to participate. through this iterative snowball sampling process, individuals who were swds studying at the university of fort hare and lovedale college, as well as staff at the du, scu and student support office of these two institutions, were selected (munjanja & hendricks 2024). at lovedale college, seven participants volunteered to participate, and eight volunteered at the university of fort hare. the recruitment process took one month. it reached saturation after 15 participants, marking the conclusion of the recruitment process. we chose the university of fort hare and lovedale college tvet because they offer diverse study environments, from well-established universities to vocational and technical education institutions, ensuring comprehensive insights into support systems across various educational contexts. data collection face-to-face and online semi-structured interviews were conducted to collect data from participants. semi-structured interviews allowed participants to express their perspectives in depth and allowed the first author to obtain more information from the participants by asking follow-up questions (kallio et al. 2016). interviews were audio recorded. recording the participants’ responses allowed for additional information beyond what was written down during the interview and facilitated later transcription. a research assistant was responsible for recording face-to-face interviews and writing notes. because of impending examinations, some participants opted for virtual platforms like zoom and whatsapp for interviews. two students were interviewed via zoom meetings, four via whatsapp calls, and nine participants were interviewed face-to-face. the participants were interviewed in english; each interview lasted for approximately 30 min, and the interviews were held in private settings to ensure confidentiality (munjanja & hendricks 2024). data analysis the six steps of thematic data analysis by braun and clarke (2006) were used to analyse data. data were first transcribed, which involved attentive listening to recorded interview sessions and accurately typing the content into textual data. the first author and a research assistant created the first codes by categorising data related to the participants’ experiences, perceptions and interactions with institutional support systems, and comparable codes were compiled into themes for further analysis. following that, the findings were examined in relation to these coded themes. the concepts and conclusions were communicated through a narrative with supporting data quotes. to guarantee the quality and trustworthiness of the data, three critical criteria were considered such as credibility, transferability and dependability (nowell et al. 2017). following suggestions by anney (2014), credibility was ensured through ongoing participant engagement to validate findings and regular debriefing sessions between the first author and supervisor to address challenges. transferability was ensured by refining our study’s procedures and findings through multiple phases, including member checks, to achieve a detailed and comprehensive description. dependability was ensured by the researchers diligently recording decisions and activities throughout our study, keeping comprehensive records to ensure a clear audit trail (anney 2014, munjanja & hendricks 2024). ethical considerations ethical clearance to conduct this study was obtained from the university of fort hare research ethics committee (urec) (no. rec-270710-028-ra). participants signed informed consent. results our study explored how institutional support systems influence the experiences of swds in he. five key themes emerged: (1) students are aware of their institutional support systems, but are unsure of the services they provide; (2) services are available to students who have disclosed their disabilities; without disclosure, institutional support systems may not be able to reach students; (3) structural barriers to inclusion: the urgent need for university action and policy reform; (4) there is insufficient collaboration between the du, university departments and external support systems; and (5) the lack of independent dus hinders students from disclosing their disability and accessing services freely (munjanja & hendricks 2024). characteristics of the sample fifteen swds participated – nine men and six women. among them, 13 had physical disabilities, 1 had a psychosocial disability, and 1 had a partial vision impairment. the group comprised 4 postgraduate and 11 undergraduate students from different academic disciplines. the diverse backgrounds of the participants played a crucial role in shaping our findings, offering a comprehensive understanding of the experiences of swds in he. representing male and female students enabled a gender-sensitive exploration of institutional support systems. theme 1: students are aware of their institutional support systems, but are unsure of the services they provide twelve students were aware of their institutional support systems and informed by staff after first-year registration. two learned about them later through university staff and peers, while one discovered them after developing a disability. however, 7 of the 12 students remained uncertain about the services provided. a fourth-year human settlement student recalled their experience during registration in 2019 and shared: ‘the staff member who saw me on crutches during my first year at sports complex during registration informed me about the du and the scu. i have never visited these units because i am unsure of the services they offer.’ (student 1, ufh, 20 years, male) similarly, student 7, who has a psychosocial disability and physical disability, expressed: ‘during my first-year application, i disclosed my disability. the disability unit later contacted me and explained their services. even though they explained their services to me, i am still unsure what help i can get from them.’ (student 7, ufh, 23 years, female) student 15, who also has a physical disability, stated: ‘during my first-year orientation, du and scu staff explained their services and office locations. though it was clear, i had unanswered questions but was too shy to ask.’ (student 15, lc, 27 years, male) while some students learned about support systems early, others spent years at their institutions unaware of these services. student 13, a third-year student with a physical disability, shared: ‘i missed orientation in my first year and never heard of the du and scu. in my second year, my residence warden informed me, and i later registered with the du.’ (student 13, lc, 25 years, male) student 8, a fourth-year student of bachelor of social sciences, only learned about her institutional support systems after developing a disability. she said: ‘following a bone fracture and thumb amputation, her doctor provided a letter outlining her limitations. after giving it to her lecturer, she was referred to the du.’ (student 8, ufh, 24 years, female) unlike students 13 and 8, student 14, who has a physical disability and was a second-year student of bachelor of office administration, learned about support services from a fellow student: ‘another student with a disability mentioned the du when we were having a general conservation. that is when i got to know.’ (student 14, lc, 29 years, male) theme 2: services are available to students who have disclosed their disabilities; without disclosure, institutional support systems may not be able to reach students students reported receiving services from their institutional support systems only after registering with their dus. also, the students who got to know of their du later did not receive services in the early years of their studies until they disclosed their disabilities to their dus. student 1 stated: ‘i disclosed my disability at the du when i was a first-year during registration, and the du has been supporting me.’ (student 1, ufh, 20 years, male) student 12 similarly shared: ‘during orientation, i registered my name with the student support office, and i go there every time to print my assignments.’ (student 12, lc, 20 years, female) student 2, on the other hand, said: ‘i got to know of the du in my third year. i was surprised the day i registered my name and was informed about the services offered by our du.’ (student 2, ufh, 28 years, male) theme 3: structural barriers to inclusion: the urgent need for university action and policy reform participants emphasised the ongoing structural barriers that hinder their full inclusion in he. they highlighted that while some accommodations exist, they fail to address the broader systemic challenges. issues such as inaccessible infrastructure and outdated policies remain significant obstacles, requiring urgent intervention and comprehensive policy reform to ensure meaningful inclusion. many students faced significant barriers related to accommodation and mobility on campus. student 5, a fourth-year student and a wheelchair user, shared: ‘the du wrote a letter to the residence office on my behalf, and i was given a single room with an ensuite bathroom. however, i cannot visit my friend on the upper floor there are no lifts. our residences and classrooms should have lifts to move freely.’ (student 5, ufh, 24 years, female) similarly, student 2 stated: ‘the du arranged transport, but there are delays even when i book in advance. i wish i could move around like my peers. the institution should build accessible residences closer to classrooms.’ (student 2, ufh, 28 years, male) student 15 also noted: ‘although the institution provided a motorised wheelchair, the lack of sufficient ramps on campus and the stone-covered ground still makes it difficult for me to navigate on my own. ramps are very important; we should have more ramps in our institution.’ (student 15, lc, 27 years, male) beyond physical barriers, students also faced social challenges. student 9 shared their experience with stigma and how counselling helped: ‘when i arrived, i faced stigma from other students. i went to the scu. after six sessions, i learned to accept myself, but the stigma continues. the university should raise awareness to educate students about disabilities.’ (student 9, ufh, 30 years, female) participants expressed that they acknowledged that their institutions were trying to help them but were still facing challenges. for instance, although student 5 received a single room, their movement within the residence remained restricted because of the lack of lifts. similarly, student 15 was provided with a motorised wheelchair, while the campus infrastructure, such as inadequate ramps and rough terrain, still limited independent mobility. student 2 had access to institutional transport, but delays and the distance of disability-friendly residences from classrooms hindered their full participation. student 9 faced initial stigmatisation and sought support from the scu. while the counselling helped the students accept themselves and cope with stigma, the ongoing challenge of societal acceptance remained unresolved. the student suggested that the unit’s efforts could be more effective if they included broader awareness and education initiatives to address the root cause of stigmatisation of persons with disabilities. theme 4: there is insufficient collaboration between the disability unit, university departments, and external support systems participants expressed disappointment when they needed assistance from their dus that involved other university departments and external support systems like financial bursaries, university faculty and the administration office. the following are the verbatim expressions of the participants: student 14 shared that the student support office was always responsive whenever they sought assistance and expressed: ‘they respond quickly, but faculties and administration often delay. other departments should be educated to assist us on time.’ (student 14, lc, 29 years, male) similarly, student 7 expressed frustration with the system when encountering difficulties with their nsfas (national student financial aid scheme) meal allowance and explained: ‘as an nsfas beneficiary, i faced meal allowance delays. the du referred me to the bursary office, but both said it was beyond their control. i felt disappointed and stuck, losing trust in the du.’ (student 7, ufh, 23 years, female) student 12 also recounted a similar struggle in accessing financial assistance and shared: ‘i went to the student support office when i did not receive my meal allowance for october. they referred me to finance, and i was told to follow up with nsfas. nsfas said i was not in the system, even though this is my 4th year receiving allowances.’ (student 12, lc, 20 years, female) theme 5: the lack of independent disability units hinders students from disclosing their disability and accessing services freely participants from one of the selected institutions reported that their du is part of the student support office, which serves all students. they felt this setup discouraged them from seeking help and disclosing their disability. one participant shared: ‘i first visited the du when registering, but the office is for every student on campus. this makes me hesitant to go, especially with my invisible disability, as i have to disclose it to them repeatedly. they should have an office for swds only.’ (student 13, lc, 25 years, male). some swds indicated that they concealed their disabilities because the office responsible for supporting them lacked privacy, as it also served students without disabilities. student 10 shared: ‘i have friends who are in their third year, and they have invisible disabilities. they vowed not to step foot in that office; they feel there is no privacy.’ (student 10, lc, 22 years, male) discussion while swds may be aware of the existence of du at their institutions, there is a clear gap in their understanding of the full scope of services offered. this issue is critical because many students indicated that the du was their first point of contact for assistance, but many remained unsure about the exact nature of support available. this is like kim and crowley’s (2021) argument that heis often fail to effectively communicate the full range of available support services, leading to limited student awareness. this lack of outreach is especially evident when students miss crucial orientation events or fail to disclose their disabilities during registration. consequently, students may navigate their academic experiences with insufficient institutional support, fostering a sense of self-reliance because of the absence of clear communication (aithal & aithal 2023). to address this, institutions should prioritise proactive outreach initiatives and awareness campaigns to ensure that all students, especially new enrollees, are well-informed about the support services available to them (munjanja & hendricks 2024). a key issue highlighted in our study is the link between disability disclosure and access to institutional support services. higher education institutions are legally obligated to provide support, such as alternative learning materials and modified assessment methods, once students disclose their disabilities (cinarbas & hos 2022). however, to access these, students must first disclose their disability and engage with the du, which may also include benefits like stipends specifically for swds (brewer, urwin & witham 2023). while students who disclose their disabilities can access specialised services, including extended exam time and assistive technologies, those who do not disclose are often excluded from these provisions (becker & palladino 2016). the reluctance to disclose disabilities is rooted in several factors, such as the fear of stigma and negative labelling by lecturers and peers (grimes et al. 2019). the findings in grimes et al.’s (2019) study had similar findings, where some students chose not to disclose their disability out of fear of being stigmatised by both their peers and lecturers. furthermore, as observed by grimes et al. (2019), some swds may not consider themselves as having a disability or may prefer to navigate their education without additional support. however, this hesitancy to disclose significantly limits students’ access to vital institutional support, reinforcing the critical role of disclosure in ensuring that swds can access the accommodations necessary for their academic success. despite the presence of institutional support systems, the assistance provided to swds often lacks sustainability and fails to address the systemic barriers that hinder their full participation in he (mbuvha 2019). our participants highlighted infrastructural barriers and stigma as barriers to their learning. while some institutions implement disability support measures, these are often reactive and fragmented rather than part of a strategic, long-term commitment to inclusion (mutanga 2017). therefore, universities should adopt a twin-track approach, integrating mainstream support structures that accommodate all students while ensuring targeted interventions that address the specific needs of swds (united nations 2012). this means embedding considerations of disability, gender and other intersectional factors into all policies, planning and programme implementations, ensuring that institutional responses are not merely compensatory but transformative. as vincent and chiwandire (2017) argue, swds will continue to face challenges in equitably accessing education without addressing the structural barriers perpetuating exclusion (munjanja & hendricks, 2024). to achieve meaningful inclusion, universities must go beyond providing temporary accommodations and work towards systemic change that ensures that swds have equal access to education and opportunities for success (mbuvha 2019). this requires the integration of disability-specific interventions within mainstream services, ensuring that students receive support without feeling isolated or marginalised. institutions must actively address stigma and discrimination within the student body and in institutional culture by fostering environments that prioritise accessibility, equity and inclusivity (vincent & chiwandire 2017). another important issue is the lack of coordination and communication between the du and other university departments. although dus are intermediaries between swds and various university functions, this role was not always executed efficiently. for example, some students noted delays in accommodations because of poor communication between the faculty staff, the du and the facilities’ management teams. this issue is like kilpatrick et al. (2016), who reported that students and staff identified poor communication as a critical barrier to providing timely and effective support to swds. the failure to ensure that faculty staff were adequately informed about the necessary accommodations further exacerbated the challenges faced by swds, particularly when academic materials were inaccessible or when classroom settings were not adjusted to meet the students’ needs (kilpatrick et al. 2016). moreover, the collaboration between dus and external support systems, such as government funding programmes like the national student financial aid scheme (nsfas), remains insufficient. vincent and chiwandire (2019) noted that nsfas introduced a student loan plan in 1996 to assist underprivileged yet capable students in pursuing he. the nsfas programme aimed to provide opportunities for education and post-secondary training while offering additional support to help students overcome the challenges of disability (sokhweba 2022). however, many students reported difficulties in accessing nsfas funding and receiving timely support, which reflects broader issues of insufficient resources and poor communication, ultimately hindering the full inclusion of swds in academic life. this highlights the need for government intervention to address these barriers, specifically by ensuring that under-resourced students receive mainstreamed support through track 1 and swds are provided with additional assistive devices and targeted interventions through track 2 of the twin-track approach (dhanda 2020). higher education institutions must strengthen their partnerships with external agencies and improve internal communication to address students’ needs comprehensively and promptly. the absence of independent dus at some institutions remained a significant barrier to the students’ ability to disclose their disabilities and access the support services they needed. the du is a fully equipped entity that provides financial and human resources to swds (chiwandire 2020). many students prefer separate units as they offer a more discrete and supportive environment, reducing the perceived shame or judgement associated with disclosing a disability. our findings are similar to those of zhang (2024), who argued that independent dus are critical in creating an environment where students feel confident and empowered to disclose their disabilities. without a dedicated office, students may feel that their needs are secondary to the broader objectives of the other departments, thereby limiting their access to tailored support services (zhang 2024). the lack of an independent du also impeded the visibility of disability services, making it harder for students to navigate the system and understand the full range of support available. munjanja and hendricks (2024) recommended that institutions must prioritise the establishment of independent dus that can serve as central hubs for disability-related services, ensuring confidentiality and accessibility. de cesarei (2015) added that establishing independent dus would help create a more supportive and inclusive environment for swds, facilitating their academic success and social integration. this implies that the setting in which students decide to reveal their disability is important (de cesarei 2015). thus, institutional support systems should create a secure and independent environment and a trusting culture to encourage disability disclosure (potts 2017). many participants expressed a reluctance to engage with integrated services because of past experiences of discrimination, exclusion or being perceived as burdensome by their peers and staff. this preference for separate spaces may, in part, reflect the deep impact of stigma and self-stigma, where students internalise societal attitudes and seek to distance themselves from able-bodied peers to avoid further marginalisation (mutanga 2017). additionally, some students may have developed a sense of mistrust towards mainstream institutional services, perceiving them as inadequate in addressing their specific needs (nwangwu 2021). this suggests that beyond structural challenges, the emotional and psychological dimensions of disability experiences play a crucial role in shaping students’ preferences for independent support structures. while independent dus provide a safe and affirming environment, this raises critical questions about the effectiveness of broader institutional inclusivity efforts. makuwira (2022) added that universities must consider how to balance dedicated disability support with mainstreaming efforts in a way that both mitigate stigma and foster a truly inclusive campus culture. independent dus create an atmosphere where swds feel their needs are validated, fostering trust and openness. this approach supports the idea of track 2 of the twin-track approach, which targets the specific needs of swds while ensuring their inclusion in the broader academic system (united nations 2012). the potential for mainstreaming with dedicated support for disability-specific needs, as outlined by the twin-track approach, presents an interesting solution. the united nations (2012) noted that track 1 of the twin-track approach focuses on mainstreaming support for all students, including those under-resourced; meanwhile, track 2 provides targeted interventions, including assistive devices and tailored services for swds. this dual approach ensures that swds are fully included in their academic pursuits while receiving the specific support they require (nwangwu 2021). the challenge, however, lies in the practical implementation of the twin-track approach, especially in contexts where resources are limited and communication between departments is weak. however, when dus are isolated, it may limit the potential for swds to engage fully in mainstream activities. therefore, institutions should aim to strike a balance between independent dus and integrated support, ensuring that both specialised resources and inclusive mainstream systems work together to offer a holistic approach to student support (dhanda 2020; munjanja & hendricks 2024). limitations although we sought to collect extensive participant data to achieve our objectives, there were some limitations. interviews were conducted both face-to-face and virtually. however, virtual interviews posed challenges, particularly with network unreliability. the interruptions caused by poor network connectivity led to incomplete responses, resulting in rescheduled interviews, which could be viewed as a limitation because of potential delays in data collection and inconsistent communication. also, many participants were students with physical disabilities, with one participant having a psychosocial disability and one with partial vision disability. this limited range of disability types may not fully capture the diverse experiences of swds, such as sensory, intellectual or mental health disabilities. despite these obstacles, data collection was ultimately successful. recommendations recommendations for the study are as follows: future research should include a more diverse group of students with different disabilities to better understand the impact of institutional support systems across various experiences. based on the students’ perspectives, we suggest that support systems create and share a comprehensive guide on available services, in print and online, and promote it via orientation, emails, social media and campus posters. support systems should develop long-term programmes, including ongoing counselling, skill-building workshops, mentorship and tailored academic accommodations, to address students’ core challenges. heis are urged to build independent dus to create a safe space for students to disclose their disability. however, where resources do not currently allow for this or where universities aim to adopt a mainstreaming approach, institutions should implement measures to address key barriers, particularly stigma. this can include fostering a culture of inclusivity through awareness campaigns, staff training and clear policies that promote confidentiality and non-discrimination. conclusion institutional support systems foster inclusivity and accessibility in he for swds. while these systems provide essential services such as academic accommodations, emotional support and advocacy, their effectiveness is often hindered by structural limitations, resource constraints and a lack of independent dus. our study highlights the critical need for universities to strengthen these support mechanisms to ensure that they are accessible and sustainable. a key barrier to effective support is the requirement for students to disclose their disabilities to access services. many students choose not to disclose their disability due to stigma, a lack of trust or concerns about confidentiality, ultimately excluding them from the needed assistance. additionally, where dus are integrated within other departments, their visibility and effectiveness are compromised, making it harder for students to access timely and specialised support. moving forward, universities must prioritise strategies that promote both mainstreamed and targeted support, aligning with the twin-track approach. establishing independent dus, improving resource allocation and fostering a culture of inclusivity are essential steps to ensuring that swds receive the support necessary for their academic success. acknowledgements the authors would like to thank all research participants for their input, without whom this study would not have been possible. this article is partially based on the author e.c.m’s thesis titled ‘the effectiveness of the national disability policy in promoting the rights of students with disabilities in selected institutions of higher learning in raymond mhlaba, eastern cape, south africa’ towards the degree of master of social work in the department of social work, university of fort hare, south africa on 4 october 2024, with supervisor [prof eleanor hendricks. it is available here: [https://ideas.repec.org/a/ejn/ejssjr/v12y2024i2p47-65.html]. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions e.c.m. conducted data collection and data analysis for master’s degree purposes and drafted the first draft of the article. e.a.h. supervised e.c.m. during her master’s studies. all authors made conceptual contributions to the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the authors confirm that the data supporting the findings of this study are available within the article, however, further inquiries can be directed to the corresponding author, e.c.m. disclaimer the views and opinions expressed in this article are 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united nations, 2012, report of the secretary-general on mainstreaming disability in the development agenda, e/cn.5/2012/6, viewed 05 april 2025, from https://www.un.org/disabilities/documents/reports/e_cn5_2012_6.doc. vincent, l. & chiwandire, d., 2017, ‘wheelchair users, access and exclusion in south african higher education’, african journal of disability 6(1), 1–9. https://doi.org/10.4102/ajod.v6i0.353 vincent, l. & chiwandire, d., 2019, ‘funding and inclusion in higher education institutions for students with disabilities’, african journal of disability 8(1), 1–12. https://doi.org/10.4102/ajod.v8i0.336 zhang, n., 2024, rentz’s student affairs practice in higher education, charles c thomas publisher, springfield, illinois. abstract introduction the ‘young africa works: disability inclusive research partnership’ project considerations and benefits of youth involvement exploring experiences and data quality discussion conclusion acknowledgements references about the author(s) femke bannink mbazzi disability research group, mrc/uvri & lshtm uganda research group, entebbe, uganda international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom shaffa hameed international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom john k. ganle school of public health, university of ghana, accra, ghana tom shakespeare international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom sarah polack international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom citation bannink mbazzi, f., hameed, s., ganle, j.k., shakespeare, t. & polack, s., 2024, ‘participatory research with youth with disabilities: experiences from sub-saharan africa’, african journal of disability 13(0), a1491. https://doi.org/10.4102/ajod.v13i0.1491 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa,’ under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research participatory research with youth with disabilities: experiences from sub-saharan africa femke bannink mbazzi, shaffa hameed, john k. ganle, tom shakespeare, sarah polack received: 31 may 2024; accepted: 26 aug. 2024; published: 21 oct. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: disability inclusive youth research, involving youth with disabilities in the design, implementation and dissemination of study data, is still limited in africa. objectives: to describe and reflect on the experiences of involving youth with disabilities in an exploratory research study, focused on disability-inclusive education and employment in 7 african countries. method: 12 youths with different impairments, aged 18 to 35, were employed as researchers in ethiopia, ghana, kenya, nigeria, rwanda, senegal and uganda. youth researchers contributed to the data collection and analysis of interviews with 210 youth with disabilities. 24 youth advisors with disabilities formed two youth advisory groups (yag) of 12 advisors each in the regional hub countries ghana and uganda. the yags met 4 times during the project and contributed to the study design, data collection, data analysis and dissemination activities. in addition, 4 workshops were held with the ugandan yag to develop a participatory film. results: together with the youth participants, we reflected on the experiences of involving youth with disabilities and conducting research with, by and on youth with disabilities. we highlighted ethics and safeguarding, recruitment and representation, exploring experiences and data quality, participatory dissemination, accessibility, capacity building and networking as key areas of consideration and benefit in this project. conclusion: participatory research with youth with disabilities is feasible, enriching, and key to inclusive research that informs education and employment policy and practices. contribution: lessons learned from youth involvement in a disability inclusive research programme, focused on education and employment in 7 african countries. keywords: participatory research; youth; disability; employment; education; africa. introduction globally, young persons with disabilities are left behind in access to health care, education, social participation and employment (kuper et al. 2014; world health organization 2022). youth with disabilities are less likely to attend school and those who do attend have lower educational attainment compared to their without disability peers (united nations children’s fund 2021). the risk of unemployment for youth with disabilities is high, and even if they are employed, they are more likely to have irregular employment and lower earnings (banks, kuper & polack 2017; mactaggart et al. 2018). the coronavirus disease 2019 (covid-19) pandemic has further exacerbated the exclusion of youth with disabilities (shakespeare, ndagire & seketi 2021). over 70% of the population of sub-saharan africa is under 30 years old; approximately 12% of them have a disability (united nations 2022). to understand the experiences of young people with disabilities and develop contextually appropriate and effective strategies to promote participation, youth with disabilities need to be included throughout the research process (bailie et al. 2023; kuper et al. 2014; lundy, mcevoy & byrne 2011). participatory research with youth with disabilities in sub-saharan africa must be underpinned by respect, equitable partnerships, barrier removal and the use of appropriate tools (chappell et al. 2014; kuper et al. 2021; wickenden & kembhavi-tam 2014). this requires a shift in power from researchers from high-income countries to people with disabilities and researchers in low-income countries as well as researcher–subject power dynamics (kuper et al. 2021; njelesani et al. 2022), consideration of african research methods (mkabela 2005; owusu-ansah & mji 2013) and youth-friendly research processes (chappell et al. 2014; njelesani et al. 2022; wickenden & kembhavi-tam 2014). research with and by youth with disabilities rather than on youth with disabilities only, is key to avoid a tokenistic approach (kuper et al. 2021; njelesani et al. 2022). in the ‘young africa works: disability inclusive research partnership’ project, we designed a participatory research study with youth with disabilities in ethiopia, ghana, kenya, nigeria, rwanda, senegal and uganda. we recruited youth with disabilities as researchers, created youth advisory groups (yags) and asked youth participants with disabilities to co-create a participatory film to share study findings. participatory film has been used as a way to give voice to marginalised groups, in which participants use cameras to document, explore and engage with their environment and create a film that communicates information, reveals hidden information and stimulates community action (gubrium, harper & otañez 2015). participatory filmmaking is a co-creative flexible process, which uses preparatory, participatory and action phases (lorenz & kolb 2009). steps include brainstorming ideas, getting to know the equipment, storyboarding, shooting the films, watching, and reflecting on the films and the process and dissemination (benjamin-thomas et al. 2019). important aspects of participatory film in our research context are the interdependence between the youth and their family and communities, power relations and ethical considerations (bannink mbazzi et al. 2024). in this article, we describe our experiences and reflections on a participatory research project working with youth with disabilities as researchers, as advisory members (conducting research with) and as study participants (conducting research on) to explore the experiences of youth with disabilities in education and employment. the ‘young africa works: disability inclusive research partnership’ project the ‘young africa works: disability inclusive research partnership’ project had three different levels of representation of youth with disabilities to ensure inclusion. identifying and recruiting youth with disabilities as co-researchers firstly, a total number of 12 research team members with disabilities, from the level of team leader to research assistant were recruited in the seven countries. in the advertisement, which was made accessible for screen readers and circulated in networks of organisations of persons with disabilities through traditional methods such as newspaper adverts as well as social media, it was made clear that the project wished to recruit youth with disabilities as co-researchers. during the selection process, attention was paid to ensure barrier removal and reasonable accommodations were provided. the selected youth were offered reasonable accommodations at work. they received training on research ethics and study processes and were paid the organisation’s salary rate for their research position for the duration of employment (on average 1 year). the researchers interviewed approximately 30 youth with disabilities per country. we ensured that each research team had at least one or more researchers with a disability. establishing youth advisory groups with youth with disabilities secondly, two yags were created in ghana and uganda, each consisting of 12 female and male youth with different impairments under 35 years. youth advisory groups were established in collaboration with organisations of persons with disabilities in the respective countries with support from national disability organisations and networks of persons with disabilities. to ensure representation, organisations representing persons with different impairments were asked to nominate youth who could contribute to the advisory groups. based on individual discussions and the availability of each of the proposed youth, a selection was made in each hub to ensure representation of gender and impairment groups. the groups anchored the east and west african research hubs for the multi-country programme. the yag advised the study team at inception, during implementation and at dissemination on content and involvement of youth with disabilities and they co-led dissemination activities. in addition, yag members were provided with training which they expressed the need for as advisory team members. for example, the uganda group was interested in learning more about research ethics and received training on the same. the group in uganda had six female and six male members with different impairments, including spina bifida, spinal cord injury, cerebral palsy, hearing impairment, visual impairment, albinism, chronic mental health conditions and down syndrome. the ghanaian group consisted of five male and six female members with different impairments, including hearing impairment, spina bifida, spinal cord injury, visual impairment and albinism. the yags met on a quarterly basis. youth advisory group members received remuneration as per national guidelines for advisory committees. reasonable accommodations were provided and budgeted for in the project. the youth ensured that the young africa works study was conducted with youth with disabilities and ensured dissemination was carried out by youth with disabilities. involving youth with disabilities as research participants thirdly, a group of 210 youth with disabilities was purposively selected as study participants in the seven countries, taking into account impairment type, age, gender, rural and urban locations, education and employment status with the aim to ensure an equitable representation. similar to the selection of the youth researchers and advisors, we approached existing networks of persons with disabilities, as well as local leaders, rehabilitation centres, schools and employers to identify a wide range of participants. the research teams interviewed participants about their experiences in education and employment. while the research was mostly conducted on 210 youth, it was conducted by research teams that included researchers with disabilities. of the 210 youth, 10 purposively selected youth participants from ghana and uganda were asked to participate in the participatory filmmaking process together with the yag members, contributing to research with youth. we reflected on the youth participation during team meetings with research staff in each of the two hubs, as well as the two yags in study advisory meetings. we also asked the youth who contributed to the participatory filmmaking to reflect on their participation in an evaluation meeting at the end of the project. the reflections were guided by questions about the barriers and facilitators to youth involvement in the project and benefits that were derived from youth involvement. the analysis process was a reflexive and informal process of discussions between the research teams and yag members. it started from reflections which were made throughout the study and were woven into ongoing study activities such as regular team meetings, data analysis workshops and yag meetings. written reports of the discussions, study and advisory meetings, as well as individual country reports on the interview data from the 210 youths were reviewed by two members of the research team. they drafted a list of considerations and themes around participation and shared this with the youth advisory members and young research staff members for feedback. the key considerations and benefits included ethics and safeguarding, recruitment and representation, exploring experiences and data quality, participation in dissemination, accessibility and capacity building and networking, further discussed in the next section. reasonable accommodations were provided for research staff, yag members and research participants where needed, and included sign language interpretation, provision of braille prints, screen readers, easy-read and large prints, and allowances for personal aids. participants and persons providing aid received reimbursement for their time as well as a transport refund where meetings took place away from their home locations, following national guidelines for compensation. considerations and benefits of youth involvement ethical considerations a key consideration in conducting research on youth with disabilities is the ethics around meaningful and safe involvement. for the young africa works: disability inclusion partnership study, ethical clearance to conduct this study was obtained from ghana health service ethics review committee (no. ghs-erc: 009/08/21), addis ababa university institutional review board (no. 006/22/sph), uganda virus research institute ethics committee (no. gc/127/867), kenyatta national hospital university of nairobi ethics research committee (no. p7/01/2022), national health research ethics committee of nigeria (no. nhrec/01/01/2007), university of rwanda, college of medicine and health sciences (no. 43/cmhs irb/2022), global research and advocacy group, national ethics committee for health research (no. sen22/51) and the london school of hygiene and tropical medicine (no. 26513). all participants gave informed consent to participate in the study. youth who participated in the yags and the participatory film specifically agreed to the photo and film activities and sharing of outcomes in the public domain. where required, consent of a parent or guardian was received on behalf of youth with cognitive or communication impairments, while the youth gave consent to participate. the filmmakers obtained permission from the relevant authorities to film in public spaces, following ugandan and ghanaian local policies and guidelines. a safeguarding policy was developed for the project and all research staff were trained. each country had specific referral pathways in place, with a list of service providers that could be consulted in case of a safeguarding concern. in addition, debriefing meetings were held within the country teams to allow researchers to reflect on their experiences during the interview data collection. the yag members were asked to carefully reflect on their emotional well-being while participating in the meetings and more specifically the participatory filmmaking. recruitment and representation participant recruitment involved organisations of persons with disabilities, specialised health and education services for persons with disabilities, and contacts of yag members, as well as snowballing. having youth with disabilities contribute to the recruitment of study participants, enabled higher levels of representation of persons with different impairments. for example, in ghana, a young woman with albinism supported the recruitment of participants. as participants trusted her, she was able to invite individuals who may have been hard to find and recruit if approached by other researchers. youth with different types of disabilities, gender, and age with experiences in secondary and tertiary education as well as employment such as agriculture, tourism, information technology (it) and other sectors were selected to participate by the yags. youth with disabilities participating in the filmmaking reflected that the diversity of the yag ensured they made a film that was representative of a large group of youth with disabilities. there were limitations to the participant recruitment of youth with disabilities. for example, participants suggested by organisations of persons with disabilities (opd) and other organisations tended to be highly educated, come from urban areas and do not represent the most marginalised groups of youth with disabilities, even if they come from low-income households. in addition, some youth with impairments such as those with severe cognitive impairments and others who are deaf-blind, were not included. youth representatives felt that it would be important to identify strategies to include more marginalised youth in future programmes. these could include purposive selection and snowballing through rural community networks, seeking out persons with invisible impairments such as autism spectrum disorder, persons who are both deaf and blind, and persons with more severe neurological and speech impairments. exploring experiences and data quality having young persons with disabilities involved in conducting interviews with youth with disabilities gives in-depth information which explores disability experiences at a different level. for example, a young researcher with a hearing impairment conducted an interview with a youth with a hearing impairment and was able to engage and delve into more detail in the interview than a researcher with a sign language interpreter. some of the study participants mentioned that they felt at ease and could open up more as they felt their peer youth with a disability would understand their experiences better. youth participating in the interviews and film process mentioned that sharing their stories at times made them feel emotional. at the same time, their direct involvement in the film and continuous re-telling of their stories in the filmmaking process also allowed for genuine and in-depth sharing of lived experiences. the youth mentioned feeling heard and glad they were given a space to share their perspectives. participation in dissemination as part of the dissemination strategy, we co-created a participatory film with the yags, 10 study participants, and the research teams in ghana and uganda. in the first workshop, we worked with the existing yags and research teams to brainstorm about how best we could create a film that would narrate the experiences of youth with disabilities in education and employment in africa, based on the findings from the interviews. in the second workshop, we identified and prioritised the focus of the narrative and trained youth on storyboarding and camera use. the youth identified key participants for the film and started filming different youth stories both in ghana and uganda. rough footage was shared at the third workshop for feedback. in the fourth workshop, the semi-final film was shared. the groups discussed how to make the films as accessible as possible to all, and worked on captioning, audio narratives, music and text. youth advisory group members were also a central part of the final project workshop attended by representatives from all seven countries (including researchers, opds, non-governmental organisations [ngos] and policymakers). youth advisory group representatives presented their lived experiences, narrated the development of and presented the final version of the film and shared their experiences of making this. research team members with disabilities additionally gave oral presentations at the workshop. the research teams in each country also shared project findings and the film with local stakeholders in in-country dissemination meetings to elicit discussion and action. in addition, a delegation of the uganda yag presented findings and the film at the afrinead conference in south africa, and the end of the project webinar. it was also shared with mastercard foundation staff in an online capacity-building workshop. barrier removal and accessibility the presence of research team members with disabilities at the various research organisations resulted in some barrier removal and accessibility initiatives. for example, the ugandan partner organisation in the project built ramps and negotiated the use of accessible cars for the research staff with physical impairments. they also marked some entrances to enhance visibility for persons with visual impairments. the making of the film resulted in inclusive action in some of the youth’s education and employment institutions. for example, a youth representative in uganda who is a university student mentioned that his campus made immediate changes to the accessibility of buildings after he was filmed on campus as part of participatory filmmaking. capacity building and networking participation of youth in the study teams, either through direct involvement in data collection or in the youth advisory, built the capacity of youth in research and advocacy. the youth mentioned to have developed research, filmmaking and presentation skills. the youth advisory members mentioned the project had supported networking between research organisations and organisations of persons with disabilities, opened up opportunities for future disability research, and expanded relationships between youth organisations from different organisations of persons with disabilities. for example, the ugandan yag had a youth representative from the national youth association for the deaf. this youth was able to mobilise a large group of uganda’s deaf community for the study dissemination events and created further linkages between the research organisation and the ugandan national association for the deaf. four of the ugandan yag members were selected for an internship programme at two research institutions in uganda after their participation. another five of them were asked to co-facilitate disability inclusion training for the project funders’ staff. discussion in this article, we described the ‘young africa works: disability inclusive research partnership’ project and reflected on the experiences of involving youth with disabilities and conducting research with, by and on youth with disabilities. we discussed our experiences in ethics and safeguarding, recruitment and representation, exploring experiences and data quality, participatory dissemination, barrier removal and accessibility, capacity building and networking in the young africa works: disability inclusion research partnership. in our project, we conducted research by and with persons with disabilities with barrier removal, reasonable accommodations and intentional inclusion of youth with disabilities at all stages in the research project. by involving youth with disabilities as researchers and in yags, we were able to access a varied group of study participants, collect and share in-depth lived experiences, offer career development and training opportunities for those involved, and advocate for inclusion of youth with disabilities in education and employment. our approach tried to ensure culturally relevant and inclusive disability research (owusu-ansah & mji 2013), with youth with disabilities as ‘significant participants’ and ‘equals’ in the research and decision-making process, following an afrocentric approach (mkabela 2005; owusu-ansah & mji 2013). there is no structured framework or evaluation matrix for participatory research in the afrocentric approach (owusu-ansah & mji 2013), and a limitation of this article is that we only used a descriptive and informal approach to reflect on the process. future studies could consider structured evaluation approaches and evaluation frameworks such as the research quality plus for co-production (mclean et al. 2022) adapted to the local context in discussion with youth participants. conclusion participatory research with and by youth with disabilities is feasible and key to inclusive research that informs education and employment policy and practices. further participatory research studies rooted in african disability discourse with youth with disabilities are needed to establish culturally relevant evaluation practices and guidelines. acknowledgements our heartfelt appreciation goes out to all the young individuals and stakeholders who contributed to this study. we extend our gratitude to the yag members in uganda and ghana for their active participation and valuable input in this project. we would like to specifically thank ayub twalib, betty akwii, catherine nakanyiga, charles okello, jairus wanyera, naume tukasingular adong and richard luzinda for their contributions to the film and workshop presentations. furthermore, we express our sincere gratitude to our seven partners and country teams of the young africa work study: (1) medical research council (mrc), uganda virus research institute (uvri) and london school of hygiene and tropical medicine (lshtm) uganda research unit: dr agnes ssali, elizabeth kawesa shalom, ruth najjuuko, regina namuloki, aminah nambuusi and jackie akoth; (2) university of ghana: d charlotte ofori, daniel baah, appeadu anthony, akowuah manu and cosmos wuaka; (3) addis ababa university, ethiopia: dr eshetu girma ariam and hailemariam mohammedsani ali; (4) university of nairobi: emily nyariki, adrian sakwa, jamin orenge avugwi, prof. joyce olenja and paul mugambi; (5) university of abuja, nigeria: dr fatima kyari, rasak adekoya, omojo adaji and ebuka okonkwo; (6) life time consulting ltd, rwanda: david j. musendo, gatera fiston kitema, pierre irunga, beathe uwizeye, hosiane mushimiyimana, pontien uwamungu and theogene iyakaremye; and (7) global research and advocacy group, senegal: amadou moreau, ndeye gamo tounkara and salif camara. lastly, we would like to express our appreciation to xanthe hunt of the mastercard foundation for her support of the programme and her feedback on the article draft. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions f.b.m., s.h., t.s. and s.p. contributed to the conceptualisation; f.b.m., s.h. and s.p. contributed to the methodology; f.b.m., s.h., j.k.g. and s.p. contributed to the formal analysis; f.b.m. contributed to the writing – original draft; f.b.m., s.h., j.k.g., t.s. and s.p. contributed to the writing – review and editing; f.b.m., s.h., j.k.g. and t.s. contributed to the validation; s.h., j.k.g. and f.b.m. contributed to the data curation; f.b.m., s.h., j.k.g., t.s. and s.p. contributed to the supervision; s.h., t.s. and s.p. contributed to the project administration; and t.s. and s.p. contributed to the funding acquisition. funding information this article was produced in the context of the young africa works: disability inclusion research partnership with the mastercard foundation. the partnership was a 27-month initiative that took place between october 2021 and december 2023. its purpose was to understand the obstacles and opportunities related to education and employment for individuals with disabilities and to use this information to guide future initiatives on disability inclusion. the views expressed do not necessarily represent those of the foundation, its staff, or its board of directors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the authors are responsible for this article’s results, findings and content. references bailie, j., fortune, n., plunkett, k., gordon, j. & llewellyn, g., 2023, ‘a call to action for more disability-inclusive health policy and systems research’, bmj global health 8(3), e011561. https://doi.org/10.1136/bmjgh-2022-011561 bannink mbazzi, f., kawesa, e., nalugya, r. & seeley, j., 2024, ‘the “obuntu bulamu” visual narratives: participatory research and film making about inclusion of children with disabilities in uganda’, journal of participatory research methods, in press. banks, l.m., kuper, h. & polack, s., 2017, ‘poverty and disability in low-and middle-income countries: a systematic review’, plos one 12, 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people and the covid-19 pandemic’, lancet 397(10282), 1331–1333. https://doi.org/10.1016/s0140-6736(21)00625-5 united nations, 2022, ‘young people’s potential, the key to africa’s sustainable development’, in un (ed.), africa regional review, united nations, new york. united nations childrens’ fund, 2021, seen, counted, included. using data to shed light on the well-being of children with disabilities, unicef, new york, ny. wickenden, m. & kembhavi-tam, g., 2014, ‘ask us too! doing participatory research with disabled children in the global south’, childhood 21(3), 400–417. https://doi.org/10.1177/0907568214525426 world health organization, 2022, who global report on health equity for persons with disabilities, who, geneva. abstract introduction autoethnography as a research method and design satan, studying and shopping for cures: my personal journey discussion acknowledgements references about the author(s) dane h. isaacs department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa human and social capabilities division, human sciences research council, cape town, south africa citation isaacs, d.h., 2021, ‘“satan is holding your tongue back”: stuttering as moral failure’, african journal of disability 10(0), a773. https://doi.org/10.4102/ajod.v10i0.773 note: while the term ‘coloured’ was part of the oppressive system of racial classification under apartheid, it has also been adopted by a large community of south africans who self-identify as ‘coloured’ people. this community is concentrated in the western cape and northern cape provinces, and is largely afrikaans speaking. research project registration: project number: psy-2017-0468-528 original research ‘satan is holding your tongue back’: stuttering as moral failure dane h. isaacs received: 03 july 2020; accepted: 07 jan. 2021; published: 23 apr. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. joshua st. pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences. objectives: this article aimed to build on the work of st. pierre, exploring the liminal nature of people who stutter. method: drawing on my personal experiences of stuttering as a coloured south african man, i illuminated the liminal nature of stuttering. results: this analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter. conclusion: as long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed. keywords: autoethnography; disability; discrimination; oppression; liminal nature; moral failure; south africa; stuttering. introduction researchers and speech–language pathologists in the past decade have been employing and advocating for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals (boyle et al. 2016; campbell, constantino & simpson 2019; meredith 2019; meredith & packman 2015; meredith, packman & marks 2012; st. pierre 2018; watermeyer & kathard 2016; wylie et al. 2013). st. pierre (2012), one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature when describing the disabling experiences of people who stutter. with regards to the liminal nature of stuttering, st. pierre (2012) argued that stuttering is not a homogenous phenomenon, but the fluency level of people who stutter fluctuates across different social contexts. for example, in certain social situations people who stutter may project almost fluent speech, whilst in other situations they may show significant levels of dysfluency (st. pierre 2012). as a result, people who stutter possess what watermeyer and kathard (2016) termed as a spilt, complex disabled identity in society whereby they are neither clearly abled nor disabled. therefore, it is commonly assumed that stuttering is not absolute and can be voluntarily controlled. accordingly, expectations are often placed upon people who stutter to perform or communicate on the same level as able-bodied individuals (st. pierre 2012). these experiences frequently make people who stutter feel like ‘misfits’ (garland-thomson 2011). garland-thomson (2011) described misfitting as an incongruent relationship between the disabled individual and the expectations of the social environment. she argues that this incongruent relationship instantiates injustice and discrimination against disabled individuals (garland-thomson 2011). as a result of being ‘misfits’, people who stutter are typically unable to live up to the expectations of their social environment and face shame, embarrassment and oppression. for people who stutter, this oppression may also take the form of internalised oppression (bailey, simpson & harris 2015). bailey et al. (2015) argued that people who stutter commonly internalise the negative attitudes of stuttering that exists in society. as a consequence, individuals who stutter often harbour the most negative and harsh attitudes towards their dysfluent speech (bailey et al. 2015). disfluency ‘can thus be interpreted as a distinctly moral failure: the failure of a stutterer’s will and self-discipline which undercuts and threatens capitalistic virtues’ (st. pierre 2012:3). this research article builds on the work of st. pierre (2012). employing a methodology of analytic autoethnography, i reflect on different facets of my personal experiences as a person who stutters in order to shed light on the liminal nature of stuttering. i also illustrate how the interpretation of stuttering as the outcome of moral failure often leads to the discrimination and oppression of people who stutter by able-bodied individuals, as well as individuals who stutter. disability scholars, such as kittay (2019), lourens (2018), richards (2008) and swartz (2014), have emphasised the value of the insider position within disability studies. these scholars argue that the insider position can provide critical insights into the lived and cultural experiences of disabled individuals – specifically into those physical and social structures, ideas, norms and cultural practices that oppress such individuals (kittay 2019; lourens 2018; richards 2008; swartz 2014). autoethnography as a research method and design autoethnography can be defined as a form of research, writing or storytelling, which uses personal experiences to reveal the cultural, political and social aspects of phenomenon (adams & jones 2011; ellis & bochner 2000; fa‘avae 2018; maseti 2018). according to ngunjiri, hernandez and chang (2010), autoethnography has three distinct features: firstly, autoethnography is a qualitative research method that approaches data collection, analysis and interpretation of self and social phenomenon regarding the self in a systematic manner. secondly, autoethnography is self-focused: the researcher’s individual experience is the focus of the analysis. finally, autoethnography is context conscious. whilst there is strong focus on the self, autoethnography seeks to connect the self with the social context. more specifically, autoethnography seeks to understand the social context of the self and how the social context influences the construction of the self (ngunjiri et al. 2010). autoethnography can take on many different forms (ellis & bochner 2000; ngunjiri et al. 2010). anderson (2006) made a distinction between two forms of autoethnography, namely, evocative and analytic. evocative autoethnography involves the description of individual, emotional experiences. this form of autoethnography places great emphasis on the narrative and expressive skills which are demonstrated through art, such as poetry, prose and performances (anderson 2006). analytic autoethnography describes the researcher’s subjective experiences, with the aim of formulating theoretical understanding of wider social phenomena (anderson 2006). the autoethnography presented in this article is an analytic autoethnography, and i use retrospective recollection to illuminate key theoretical issues. i have suggested elsewhere that ‘a retrospective recollection is an explicitly subjective and qualitative approach that utilities the researcher’s personal memories and lived experience as material for analysis’ (isaacs 2020:60). in the current article, i recollect and examine my personal experiences of stuttering as a coloured south african man, across different stages of my life, through a disability studies lens. through this analysis, i seek to illuminate the liminal nature of stuttering, which results in an embodied experience of moral failure. as highlighted earlier is this article, the liminal nature of stuttering and its interpretation as moral failure are essential for understanding the disabling nature of stuttering (st. pierre 2012). satan, studying and shopping for cures: my personal journey it is suggested that stuttering does not start at birth, but that individuals begin to stutter during early childhood between 2 and 6 years of age (ezrati-vinacour, platzky & yair 2001; vanryckeghem, brutten & hernandez 2005; woolston 2019). my first conscious memory of stuttering was in sub a (now known as grade 1 in the south african schooling system, the first year of formal academic schooling). i was requested by my teacher to read aloud and i could not. i stuttered on a few words, but eventually i managed to read the text. i did not understand what was happening at the time. when i asked my mother why this had happened, she told me one of infamous myths commonly associated with stuttering (national stuttering association [nsa] 2020). she replied that i had imitated another child at crèche, and that was the reason why i started stuttering (nsa 2020). she eventually took me to a speech therapist. the therapist told my mother that i had a stutter, and that i should breathe slowly before i speak. because i grew up in an evangelical christian home, i was also taken up for prayer continuously to receive healing, but there was no improvement. i was told that i did not have enough faith to be healed. i was also told that although god wanted to heal me, he could not because satan was holding my tongue back. i needed to seek god and ask him what in my life allowed satan to gain control over my speech. even to this day, when i come into contact with evangelical christians, there is always the need (on their part) to pray for me or rebuke my stutter. this experience is not unique to my story, but is all too familiar for many disabled individuals, particularly those who form part of evangelical christian communities. for example, in recent studies conducted by sande (2019) and stanley (2019), they found that impairments are typically viewed as a test of faith that can be overcome through divine healing. therefore, disabled individuals are frequently encouraged to put their faith in action and receive the healing they desire. the disabled individual’s inability to receive healing is commonly interpreted as a consequence of unbelief, demonic influence or the presence of sin (sande 2019; stanley 2019). nevertheless, as the time progressed, the liminal nature of my stuttering became more apparent. st. pierre (2012) argued that because of the liminality of stuttering, individuals are not clearly identified as disabled or able-bodied. as a result, they are commonly expected to perform on the same level as abled-bodied individuals (st. pierre 2012). similar to many individuals who stutter, the liminal nature of stuttering caused my family to see my stutter as an invisible problem (butler 2013a; scharf 2017). i was continually told, ‘[t]here is nothing wrong with you’; ‘[s]peak slowly’; and ‘[t]ake a deep breath before you speak’. i was expected to perform at the same level of my two siblings who are fluent speakers. i was required to answer the house telephone and was expected to go to the neighbourhood shop despite spending most of the journey to the shop anxiously practising what i needed to say in order to avoid stuttering in front of the shop attendant. but for much of this stage of my life, my stutter was controllable and i could conceal it. throughout my primary school career, i could fulfil the role of an able-bodied person as my stutter was not severe. i managed to do what were termed ‘orals’, i read aloud in class without much difficulty, and i was quite the extrovert. when i started high school, the severity of my stutter started showing its ugly head. previous research has emphasised the harsh bullying children who stutter commonly endure during their schooling career (butler 2013a; davis, howell & cooke 2002; hughes 2014; kikuchi et al. 2019). as a result of bullying, children who stutter typically become withdrawn, feel isolated, have a reduced self-esteem and have poor peer relationships (butler 2013a; davis et al. 2002; hughes 2014; kikuchi et al. 2019). for me, the first semester term of high school went well, but in the second semester my stutter became severe because i became a victim of bullying. this bullying exacerbated my stutter to the extent that by the second year of high school (grade 9), i became completely withdrawn. i spent most of my intermission periods alone. i had a very low self-esteem. i was forced to tell my teachers about my stutter and request that i do my orals and reading after class. many of the teachers were accommodating, whilst others, concerned with my future success, encouraged me to go to a speech therapist again to get my stutter ‘under control’. i finally decided to go to a speech therapist in grade 11. whilst the last decade has seen speech–language pathologists develop interventions to address the psychosocial needs of people who stutter, scholars, such as watermeyer and kathard (2016) argue that at the centre of several intervention strategies, is the reduction of dysfluency and the promotion of fluency. watermeyer and kathard (2016) explain because of the intense experiences of oppression and discrimination, clients who stutter have a strong desire ‘to get better’ and end the cycle of oppression and discrimination. it is at times difficult for clinicians to remain mindful of the negative implication of this position. in response, they design intervention strategies to reduce dysfluency and promote fluency (watermeyer & kathard 2016). this was my experience of speech therapy. as my ultimate aim for attending speech therapy was to gain control over my stutter, the speech therapist taught me various breathing techniques, which i still use to try to exercise control over my stutter. i was encouraged to apply these techniques to any and every oral situation i was faced with. the application of these techniques were closely monitored by the speech therapist. after each session, my level of fluency was measured according to a fluency scale. if my fluency was not up to the standard, the speech therapist would at times scold me and encourage me to do better next time. once i mustered up enough confidence, i braved the fear of stuttering, and attempted an english oral, where i failed horribly and was deeply embarrassed. my teacher was supportive and commended my bravery, but some of my classmates felt that i had wasted their time. my life seemed to be a series of blocks – one after another. i became wary about doing orals in the future. eventually, i had to stop speech therapy because my academic commitments became too demanding. for the remainder of my schooling career, i was permitted to avoid doing all oral activities. during my undergraduate studies at university, i was also able to escape class presentations. the large size of the classes provided me with possibilities to skip classes where oral assessments would be carried out. so, i was able to keep up the performance as an able-bodied individual. this experience coincided with a study conducted by butler (2013a) on the progression of people who stutter into higher education. butler (2013a) found that participants enjoyed university in comparison with school. the large cohort of students removed the pressure for asking questions, to do presentations and participate in seminar discussions. however, my first year of postgraduate studies (my honours year) was the worst year of my academic life (see isaacs 2020). oral assessments were at the core of the course. owing to my stuttering being sporadic and not recognised as a disability, i was not allowed to be disabled. i felt that i was constantly moving between the identity of an abled man and that of a disabled man. whilst i navigated between both identities, the structure of the course required that i fulfil the role of an abled-bodied (fluent) individual. we were graded for class participation and were expected to run seminars. it was really difficult, but i had to try my utmost to be fluent. the more i tried to be fluent, the more severe my stutter became. many times, i felt like an invalid and experienced many depressive episodes. i attended counselling for these depressive episodes and sought christian counselling, but nothing seemed to help. at the end of my honours year, i had been rejected for both the master’s degrees in both clinical and research psychology, and i was not able to get a placement to do my counselling internship (see isaacs 2020). fortunately, i was accepted to carry out a research masters by thesis only at another university. before accepting the offer, i met my supervisor and explained my negative experiences of stuttering at the previous university. i asked my supervisor if my stutter would be a problem. she assured me that it would not be an issue. she tried to make the course as accommodating as possible. for instance, instead of me performing a conventional oral presentation of my masters’ research proposal in front of the admissions committee, she consulted the university’s disability unit about alternative techniques we could use to present my research. we decided that it would be best if i do not perform an oral presentation, but instead submitted my proposal electronically in written form to the committee and request that they email their questions to me, and i would respond in writing accordingly. also, because of my stutter being so severe at the time, she gave me the option of either performing a media analysis for my data collection or sending me for interview training if i wanted to use interviews as a method of data collection for my research. we decided that a media analysis would be a more suited option. a staff member in the department expressed reservations about me performing a media analysis, stating that conducting interviews is a much more valuable skill at master’s level. she attributed my stutter to anxiety. she said that she herself had struggled with anxiety during high school but had overcome this. she believed that it was important that i overcome my stutter, because fluency was an important requirement for success in academia. the 2 years i spent doing masters were fairly relaxed. there was no pressure to perform any oral assessment. shortly after i submitted my master’s thesis for examination, i applied for an internship at a science council in cape town. my application was successful. although i was excited about the internship, on entering the science council i was aware that fluency was central to achieving success and promotion in such a space. i had very supportive colleagues who tried to make the space as comfortable and accommodating for me as possible. however, the culture of the organisation did not allow that i position myself as a disabled man. as i was not physically impaired and my stutter allowed me to pass as a fluent speaker in certain situations, i was expected to carry out the same oral activities as the fluent interns. at times, colleagues would jokingly say, ‘[t]here’s nothing wrong with you – it’s all in your head. you can socialise and make jokes without stuttering. so, pull yourself together’. from the liminal nature of my stutter, listeners felt that i could attain fluency if i worked hard enough at it. some colleagues suggested that i attend speech therapy; others would share stories of people who put in the necessary hard work and overcame their stutter. these stories shared motivated me to work and eventually overcome my stutter. therefore, for the duration of my time spent at the science council, i worked hard to pass as fluent. at times, i succeeded, but many times i failed horribly. each time i failed, i would blame myself for not working hard enough. many colleagues would commend my bravery. some interpreted the stuttering as me still being stuck in what they termed as ‘victim mentality’. on one occasion, a colleague even questioned my suitability for the organisation, and suggested that i had chosen an incorrect career path. interestingly, this idea of stuttering as the outcome of moral failure has been held not only by fluent speakers but also reproduced by people who stutter. as stated previously, bailey et al. (2015) and colleagues noted that stuttering commonly attracts harsh and negative societal responses. these responses are typically absorbed by people who stutter. as a result, people who stutter may be particularly negative in their response to dysfluent speech (bailey et al. 2015). therefore, there typically exists a strong desire to gain control over stuttering, renounce the stigmatised identity of stuttering (butler 2013b) and, in turn, attain the identity of an abled-bodied, fluent individual (watermeyer & kathard 2016). several people i have met who have managed to gain control over their stutter through speech therapy and/or self-help groups have dissociated themselves from the disabling identity and disabling nature of stuttering. they have aligned themselves with cultural norms and ideas of fluency, arguing that exercising controlled speech is the only way to gain true acceptance in society. yes, they seem to say, you are encouraged to disclose that you are a person who stutters, and at times request extra time when you are expected to deliver a presentation in a professional setting; however, under no circumstances can society accept disfluency. similar sentiments were shared at a for-profit self-help course i attended for people who stutter. i was introduced into this course by men who stutter and who participated in my doctoral study. i received only good testimonials from the men who participated in the course. yet, i was sceptical about attending the course because of previous speech therapy sessions that did not yield the desired result of overcoming my stutter and becoming a fluent speaker, but i decided nevertheless to give it a try. attending the course was a good experience. as it was run by people who stutter, the course was designed to address the psychosocial needs of people who stutter. on the course we were assured that stuttering was not a disability. instead, we were introduced to specific techniques to help us gain control over our stutter, particularly during orally challenging situations. similar to other new students, i left the course feeling cured and in control of my stutter. as a way to ensure that we maintain the correct usage of speech, we were required to attend weekly support groups. during these sessions, we would share our successes using the techniques we learnt on the course during challenging social situations. in the same way, there were stories where participants lost control over their stutter. every time i heard these stories, i would be disappointed and witness how these men (the graduates predominately consist of men who stutter) would fight against this concealed weakness and vulnerability. however, they were determined to master the techniques learnt and combat the stigmatised identity of an individual who stutters (butler 2013b). discussion as outlined above, over the course of my life, the liminal nature of my stutter has been viewed as a speech problem i could and should exercise control over. the language of moralising in terms of lack of control has changed from ‘the work of satan’ to an appeal from teachers, lecturers, colleagues and a for-profit company that i exercise the kind of control over my life expected from what, in the contemporary neoliberal context, has been termed as the ‘responsibilized’ subject (chaudhry 2018; colvin, robin & leavens 2010; trnka & trundle 2014). there was an expectation that i reject the identity of a disabled person and perform on the same level as an able-bodied individual (st. pierre 2012). these experiences frequently made me feel like a ‘misfit’ in relation to my social environment (garland-thomson 2011), with much of my not fitting in being described in implicitly moral terms. whilst there were times, i could uphold the performance of an able-bodied individual; however, in many situations i would lose control over my stutter. this would be interpreted distinctly as moral failure, which led to recurring incidents of discrimination and oppression. as my stutter was viewed as the outcome of moral failure, there was a belief that with the correct self-help group and sufficient speech therapy, i could manage and gain control over my stutter. the issue of control and self-control, interesting enough, features in both the religious discourse and contemporary neoliberal social arrangements. furthermore, my personal experience of stuttering outlined how interventions for stuttering may sometimes also view and approach stuttering as moral failure, or a problem that can be fixed, controlled and managed (st. pierre 2012). this one-dimensional focus places the responsibility of stuttering completely on the individual. it defocuses from the oppression people who stutter experience in attempting to perform and maintain eloquent and fluent speech (st. pierre 2019). a consequence of adopting a moralistic approach in the design and implementation of interventions, is that people who stutter, may experience shame at not being able to exercise control over their stutter. the language of a popular stuttering intervention programme is instructive here. according to mcguire (2014): [y]ou [the person who stutters] will have certain sounds and words that trigger more fear than others, resulting in, you know fsd (freeze, struggle and distort). you must attack these (thereby the fear/panic) with the weapons you’ve just learned. not only attack but extinguish, kill, wipe out, etc. until you’re bored with it … bored means 100% confident – 0% fear. (p. 57) the language used here is prescriptive and militaristic. the expectation to combat dysfluency and to strive towards fluent speech in the light of the liminal nature of stuttering may lead to internalised oppression (watermeyer & görgens 2014). watermeyer and görgens (2014) explained that cultural ideas and attitudes shape disabled people’s own subjectivity and self-perceptions. as disabled people fear being stereotyped as dependent, weak or helpless, they may grow into assuming an in control public persona in order to obtain affirmation, which drives them away from self-discovery and self-acceptance. the strong need for upholding the accepted public persona may have negative implications for the psychological well-being of the disabled individual, leading to self-doubt, identity confusion, feelings of inferiority and mental health problems (watermeyer & kathard 2016). these issues, as watermeyer and görgens (2014) suggested, may affect all people with disabilities. in the case of stuttering, the effects may be even more impactful. as long as stuttering continues to be interpreted as the outcome of moral failure, the complexities associated with the disabling experience of stuttering, the stigma and oppression attached to it, continue to be concealed and left unaddressed. it is thus essential that the interpretation of stuttering should transform from viewing stuttering as a moral failure into understanding stuttering in its social and political context – in short, as using what is known theoretically about disability and disablism to understand the experience of disability. a transition towards a disability studies approach will help to unearth the social and disabling nature of stuttering (campbell et al. 2019). specifically, it is crucial to understand how individuals who stutter are disabled by their social environment – more importantly by those dominant ideas and practices of communication, and oppressive attitudes and stigmas of dysfluency (bailey et al. 2015; bricker-katz, lincoln & cumming 2013; st. pierre 2017). over and above this, adopting a disability studies approach is important for transformation (kafer 2013; st. pierre 2019). as illustrated in my autoethnography, spaces of basic and higher education, as well as spaces of employment, demand verbal fluency. this demand for verbal fluency is exclusionary and discriminatory for people who stutter. spaces such as those mentioned above need to approach and engage with stuttering through a disability studies lens. this would cultivate conversation and promote the social inclusion and the constitutional and human rights of individuals who stutter. however above this, it would challenge those ableist norms and ideas dominating these spaces, and allow for diversity and a place for disability (st. pierre 2019). in the same way, a disability studies approach is also likely to be beneficial in the design of intervention strategies for people who stutter. indeed, there has been concerted efforts by professionals to address the disabling needs of people who stutter through environmental, functional and biopsychosocial models of disability (boyle 2019). in a recent book, stammering pride and prejudice: difference not defect, boyle (2019) called for the collaborative work between professionals and disability rights advocates to further strengthen and design effective strategies in order to improve public attitudes and responses to people who stutter. according to boyle (2019), professionals commonly approach stuttering from a service agenda framework, which includes using therapy to address self-stigma. whilst therapy has been critical in addressing and reducing stigma amongst people who stutter, i, similar to boyle (2019), recommend that professionals and researchers extend their scope of focus and take a more active role in reducing stigma through advocacy at a political and institutional level. for instance, these include advocating for the formulation of policies that promote the social inclusion of people who stutter, and modifying environmental barriers to accommodate diversity and the equal participation of such individuals (boyle 2019). in addition, professionals and researchers could be instrumental in alerting and educating families, communities and the greater public about the prejudice, stigma and discrimination fashioned against people who stutter (boyle 2019). in this way, we may be closer to effectively responding to and opposing the prejudice, stigma, discrimination and oppression commonly faced by people who stutter. acknowledgements the author would like to thank professor leslie swartz for his valuable guidance and critical insight during the write-up of this article. competing interests the author declares that he has no financial or personal relationships that may have inappropriately influenced him in writing this article. author’s contributions d.h.i. declares that he is the sole author of this research article. ethical considerations approval to conduct the study was obtained from the research ethics committee: humanities at stellenbosch university, reference number: psy-2017-0468-528. funding information the work was supported by the national institute for the humanities and social sciences (grant number: sds16/1081). data availability the author confirms that the data supporting the findings of this study are available within the article. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of author. references adams, t.e. & jones, s.h., 2011, ‘telling stories: reflexivity, queer theory, and autoethnography’, cultural studies – critical methodologies 11(2), 108–116. https://doi.org/10.1177/1532708611401329 anderson, l., 2006, ‘analytic autoethnography’, journal of contemporary ethnography 35(4), 373–395. https://doi.org/10.1177/0891241605280449 bailey, k., simpson, s. & 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b. & marshall, j., 2013, ‘changing practice: implications of the world report on disability for responding to communication disability in under-served populations’, international journal of speech-language pathology, 15(1), 1–13. https://doi.org/10.3109/17549507.2012.745164 abstract introduction research methods and design findings and discussion conclusion acknowledgements references about the author(s) lumka magidigidi centre for interdisciplinary studies of children, families and society, faculty of community and health sciences, university of the western cape, cape town, south africa nicolette v. roman centre for interdisciplinary studies of children, families and society, faculty of community and health sciences, university of the western cape, cape town, south africa inge k. sonn centre for interdisciplinary studies of children, families and society, faculty of community and health sciences, university of the western cape, cape town, south africa citation magidigidi, l., roman, n.v. & sonn, i.k., 2023, ‘human capabilities of south african parents who have children with developmental disabilities’, african journal of disability 12(0), a1155. https://doi.org/10.4102/ajod.v12i0.1155 project research number: hs19/6/44 original research human capabilities of south african parents who have children with developmental disabilities lumka magidigidi, nicolette v. roman, inge k. sonn received: 10 oct. 2022; accepted: 04 may 2023; published: 19 june 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: parenting a child with a developmental disability (dd) has a substantial influence on the lives of the parents or caregivers, as well as on how the family operates. this is frequently because of the adjustments in some daily practices that are crucial for parents’ or caregivers’ human capabilities to provide for childcare. there is not enough research done on human capabilities of parents or children with dd in south africa. objectives: this study investigated the available support in improving the human capabilities of parents or caregivers with children with dd and the bodily health and bodily integrity human capabilities of parents or caregivers with children with dd. method: qualitative interviews were conducted with 11 parents or caregivers of children aged between 1 and 8 years old with dd. this study used snowball sampling. thematic data analysis was chosen to analyse the data collected. results: the results of the study indicate that participants have difficulties bringing up their children because of the emotional strain that goes along with parenting a child with dd. in addition, participants were not able to afford decent and satisfactory shelter and had limited access to good quality food because they could not afford it. conclusion: a lack of social support and care burden influences parents’ or caregivers’ ability to raise their child with developmental disability. contribution: the study contains helpful information about families of children with dd in under-resourced locations. the information may be of significance to policymakers who are accountable for designing and executing policies that are targeted at assisting parents or caregivers of children with dd. keywords: human capabilities; freedoms; opportunities; developmental disability; parents; children with disabilities; family; capabilities approach; south africa. introduction according to the world health organization (who) (2018), globally, around 1 billion people live with a disability and about 200 million children are likely to be living with some type of disability. under the who (2018), high-income countries have a child disability rate of 2.8%, which is higher than the global rate of 5.0%. as defined by olusanya et al. (2018), developmental disabilities are a group of conditions stemming from impairments that affect a child’s physical, learning, or developmental performance. affected children generally have sensory impairments such as epilepsy or seizures, intellectual disability, cerebral palsy, attention deficit hyperactivity disorder (adhd), autism spectrum disorder (asd), hearing and vision loss, or more learning disorders. findings from zablotsky et al. (2019) indicated that the prevalence of developmental disability (dd) among u.s. children aged 3–17 years increased between 2009 and 2017. the national health interview survey (nhis) indicated that from 2009 to 2017, there was a 9.5% increase in the prevalence of developmental disabilities among children aged 3–17. the prevalence of any dd increased significantly by 16.22% to 17.76%, which indicated a rise of 9.5% when comparing the years from 2009–2011 to 2015–2017. in this period, noteworthy increases were also observed for adhd (8.47% to 9.54%, with an increase of 12.6%), asd (1.12% to 2.49%, with an increase of 122.3%), and intellectual disability (id) (0.93% to 1.17%; with an increase of 25.8%), nevertheless, a considerable decrease was seen for the category of ‘other developmental delay’ (4.65% to 4.06%; a decrease of 12.7%). in addition, the international classification of functioning, disability, and health (icf) defines disability as impairments that limit the movement, activity, participation and engagement that result from the interaction between the environment of the person impacted by the health condition (schiariti, mahdi & bölte 2018). as a result of its icf, the who acknowledges that disability is not limited to a deviation from a basic standard; therefore, it is not an individual characteristic, but rather multilayered interaction among individuals with impairments and contextual circumstances such as poverty (moreno, bennett & ferrite 2022). for this article, poverty is defined as a condition characterized by severe scarcity of basic human needs, considering food, safe drinking water, sanitation facilities, health, housing, education and information. it depends not only on income but also on gaining access to services (united nations 1995). these aspects may have an impact on the bodily and emotional health of parents or caregivers and their capability to satisfy their child’s developmental requirements (benn et al. 2012). parents or caregivers of dd children may also suffer from poor health as a result of poverty and access to or unavailability of healthcare services and assistive devices (geere et al. 2013). it is also common for parents or caregivers with children with developmental disabilities to experience poverty and scarcity or lack of economic assistance, to lack reasonable access to the necessary information to provide appropriate maintenance to their children, and to have insufficient social support (dsd, dwcpd & unicef 2012). deprivation, such as poverty, overcrowded housing and unemployment, also affects parents’ ability to care for their children adequately (ward, brown & hyde-dryden 2014). moreover, gupta, featherstone and white (2016) added that children’s well-being can be promoted by government assistance to their parents or caregivers, and by improving the living standards of poor families, including improving public housing, schools and other services. in the light of this, the south african government has acknowledged that poverty has a significant effect on children with severe disabilities (dsd et al. 2012). assistive devices or physiotherapy may be needed for children with disabilities. they may also require special attention, medication and ongoing treatment. families already struggling to make ends meet could be further burdened by these additional costs (acpf 2011). to support the country’s overall growth, the government developed policies promoting political, social and economic transformation (acpf 2011). one of these policies was mentioned by tigere and makhubele (2019), who pointed out that to alleviate poverty, south africa heavily invests in policies that ensure that all parts of the population have access to basic care. in addition, they have access to appropriate facilities such as housing, sanitation and energy sources (richardson 2018). caregiving a child with a dd is therefore difficult because of the child’s impairments and comorbidities, social contexts, the child’s extensive presentation of disability, and the absence of support systems (zhao & fu 2022). in addition, children with impairments are particularly affected negatively by poor living conditions (mckinney et al. 2021). according to statistics south africa (statssa) community survey 2007, compared with their counterparts without disabilities, children with disabilities are less likely to have access to proper housing, water and sanitation (visser et al. 2016). contrary to those who live in traditional homes and informal settlements, children with disabilities are likely to have more opportunities and access to support in higher socioeconomic circumstances (mckinney et al. 2021). children with disabilities and their families are put under a great deal of stress by overcrowded living situations and outside public toilets (dsd & unicef 2012). this, however, has been identified by mörelius and hemmingsson (2014) to affect the parents or caregivers taking care of the child. therefore, this study used the human capabilities approach to explore the human capabilities of south african parents or caregivers of children with dd. nussbaum (2011) developed the notion of human capabilities to think about social justice and the fundamental duties of a state to its citizens. furthermore, the various circumstances that surround people’s lives have an impact on their ability to perform (nussbaum 2011). in this case, competent prospective parents who have completed their secondary or tertiary education may be more equipped to assist their children’s education at home and foster an environment that is conducive to their academic achievement (hartas 2014). disability and nusbaum’s capability approach disability, according to the who (2018), is a general term for impairments, movement restrictions and participation restrictions. the term is used to describe a person’s performance as well as bodily, intellectual, physical and mental health, as well as various forms of lifelong disabilities (who 2018). fredman (2017) defines disability as an impairment that affects the body (functioning and structure); activities and participation; and contextual factors (social factors that may affect performance). however, mitra (2017) defines a disability as a deprivation related to functioning and/or capability among persons who require good health. rather than taking into account merely the right or freedom of individuals to pursue their well-being, nussbaum (2011) defines a capability approach to human welfare as focusing on the actual capacity of individuals to achieve their well-being. as nussbaum explains, ‘capabilities’ are the conditions or states of accomplishment that enable people to accomplish things such as moving freely between places. it is also very important that people have the freedom to live the kind of lives they desire, to do what they want, and to be the individuals they desire because that is what makes them great. based on nussbaum’s (2000) capability approach, parents and caregivers with children with dd experience differing levels of functioning and interactions based on their living conditions and their ability to meet the needs of their children. according to the who (2012), children can become more serious and have lifelong effects, increase deprivation, and be more excluded from society if they are not offered early intervention, assistance and security, on time. a paucity of literature exists on parenting or caring for a child with dd based on human capabilities. as a result, a global research study by the united nations international children’s emergency fund (unicef 2011) suggested that states should offer assistance, support and services to parents of children with dd so they can care for and raise their children. similarly, unicef (2011) stated that developing nations have a responsibility to provide parents and carers of children with disabilities with the necessary support so that they can care for their children. unicef (2011) adds that nations should provide early knowledge, provisions and assistance to children with disabilities and their families to prevent repression, rejection, mistreatment and exclusion. according to unicef (2011), children with impairments continue to have equal rights in the home. because of this, people with disabilities frequently have more healthcare demands than others, such as those related to basic health disorders and impairments, disability screening and the treatment of infections (beurkens et al. 2013). as a result, the united nations (2018) said that people with disabilities incur costs for things such as healthcare, transportation, specialized aids or gadgets, and house modifications to accommodate the child’s condition, among other things. it has been established that having access to financial services is crucial for helping people escape poverty (mckinney et al. 2021). as a result of poverty or unemployment, parents may find it difficult to upgrade their skills, purchase a home or pay for their children’s education (united nations 2018). south african policies for children with disabilities as a co-signatory to both the united nations convention on the rights of the child (uncrc) in 1995 and the united nations convention on the rights of persons with disabilities (uncrpd) in 2007, south africa has some of the best policies for children with disabilities (tigere & makhubele 2019). however, statistics from statssa (2014) showed that children with disabilities continue to be less likely than their without disability counterparts to have access to decent housing, clean water, and sanitary conditions. furthermore, research shows that children with disabilities are more likely than their without disability peers to live in outmoded homes in unconstitutional neighbourhoods. families and people with disabilities are under a lot of stress because of overcrowded housing conditions and outdoor restrooms (dsd et al. 2012). as a result, it is crucial to take into account the parent’s ability to raise these children because they are so fundamental to the development of these kids. parenting children with a disability within capability’s approach as stated by gupta et al. (2016), functioning’s are identified as objects or activities that people are interested in as well as estimated states of being, such as prosperity and well-being of individuals. opportunities to carry out such functions are known as capabilities (mitra 2006). the person’s capabilities depend on factors that are under their control, such as their physical qualities, financial situation and degree of education, as well as their socio-political background, which can either increase or decrease their capabilities. in response to the capability approach, parents’ functioning that is what they accomplish in their interactions with children is constrained by their living circumstances and their capacity to turn opportunities into functioning (i.e. their access to and ability to take advantage of real opportunities) (hartas 2014). therefore, the study aimed to explore the human capabilities of parents or caregivers with children with dd. the two main objectives of the study are: (1) to explore the bodily health and bodily integrity capabilities of parents or caregivers of children with dd and (2) to explore how the government assists parents or caregivers of children with dd in enhancing the human capabilities of parents. research methods and design study design a qualitative research approach was employed to explore the human capabilities of parents or caregivers of children with developmental disabilities, between the ages of 1 and 8 years old. this method allowed the researcher to create a greater understanding of human capabilities, including parents or caregivers freedoms and their bodily health and bodily integrity (safe, joosten & molineux 2012). according to this study, parents or caregivers’ physical and mental well-being are related to their bodily health. contrarily, bodily integrity refers to parents or caregivers freedom to move around and the right to autonomy as well as the absence of outside prejudice. qualitative research was appropriate for this study because, as clarke and braun (2013) suggested, it illustrates the difficulty, confusion and contradiction that characterize reality while still enabling us to make sense of many types of meaning. an exploratory-descriptive research design was employed to explore new points of view or ideas, about the human capabilities of parents or caregivers with children with developmental disabilities (ali et al. 2017). the researcher was able to build interpretations from the perspectives of participants using this form of study design without having any preconceived notions and to gain a personal grasp of the research problem (krysik & finn 2010:309). as mentioned by ali et al. (2017), a descriptive research design is a technique that, after data have been gathered from a specific sample, provides details of the characteristics of the study population. an exploratory research approach reveals a topic’s key characteristics and its relevance to the study. therefore, in this study, the focus was on the human capabilities of parents or caregivers with children with developmental disabilities and explored the bodily health and bodily integrity capability of parents or caregivers of children with developmental disabilities. research setting the study was carried out in two distinct townships in the western province of cape town, namely the kraaifontein and fisantekraal locations. kraaifontein is a township of 154 615 citizens and just 5% of these people have a college degree. kraaifontein contains 40 169 homes, 33.2% of which are headed by women. kraaifontein consists of 49.8% of men and 50.2% of women make up the population. most of its residents (43.3%) are black african people. furthermore, a variety of races can be found in the area, including white people (14.4%), any other races (1.7%), and indian people and asian people (0.4%), according to statssa (2014). the second research setting area was fisantekraal location. fisantekraal is a township with a total population of 12 369 people, 50% of whom are men and 49% of whom are women. there are 3712 homes in this township and 35% of them are headed by women. a total of 1.1% of the population of fisantekraal has received higher education. the area consists of 52% of piped water inside a dwelling and 68.5% of the households in the area have electricity. black people make up 51.5% of the population followed by mixed-race people (46.9%), asian people and indian people (0.3%), and other races (0.8%). study population and sampling strategy the sample was drawn from a population that met the criteria of the study: (1) they are caregivers or parents of children with dd and (2) who reside in kraaifontein and fisantekraal locations in cape town. a non-probability purposive sampling of 11 parents or caregivers of children with dd who had been chosen to participate in the study was used in the study. snowball sampling, a kind of purposive sampling also known as chain referral sampling, was used in this investigation. using this method, the participants or informants who interacted with the researcher used their social connections to connect with more parents or caregivers of children with dd who participated in the study. participants in the study sample were more likely to be women than men. the ages of the 11 study participants who took part ranged from 20 to 59. the majority of participants mentioned that they were unemployed at the time of data collection. however, from the 11 participants, there were only two participants who were working or employed at the time of data collection. data collection semi-structured in-person interviews with the guidance of an interview guide were used to gather the data. with the participants’ consent, all of the interviews were audio recorded in their selected language. only one participant preferred an interview in english, while the majority of participants requested that their questions be answered in isixhosa. the interviews took place in the comfort of the interviewees’ homes and lasted between 30 and 40 min each. the researcher provided a brief overview of the study to all 11 participants while reading and expanding the informed consent form and the information sheet (world medical association 2001). depending on the participant’s preference, either xhosa or english was used for the reading. subsequently, the study was further explained, and participants signed a consent form to participate in the study. furthermore, the researcher notified the participants of their right to voluntarily participate in the study and to discontinue participation at any time. in addition, participants had the chance to ask the researcher any questions they had and the researcher responded. the confidentiality and anonymity of the participants in this study were taken into consideration and it was made extremely obvious to the participants. ritchie et al. (eds. 2013) put forward that anonymity means the identity of those taking part not being identified in the research group. data analysis the study used thematic analysis, as highlighted by nowell et al. (2017) that in qualitative research methods, thematic analysis can be mostly employed through a range of epistemologies and research questions. thematic data analysis was selected because it allowed the researcher to identify, analyse, categorize, describe and report themes identified in the data set, as alluded to by braun and clarke (2006). the study was analysed in six phases of the thematic analytic process: (1) familiarising with the data: field notes from interviews, participant observations, and a reflective notebook that was kept after each interview were all used as textual data in the study. to assure transparency and gather additional information to provide usable and consistent data, the researcher also applied the idea of triangulation, using a variety of sources of data (leedy & ormrod 2014). the study used field notes and interviews as its data collection methods. (2) creating themes: after familiarising themselves with the data, the researchers created themes based on the information gathered. (3) generating codes: the researchers in this case used all of the data that had been gathered, identifying and constructing the analytical building blocks. the approach used in this study was open coding to code sections. similar codes were joined in this method to create a new code with a wide range of applications. (4) reviewing potential themes: the researchers identified themes from the data that were acquired and ensured that they addressed the main goals and objectives of the investigation. (5) defining and naming themes: according to this perspective, the researcher created an overall narrative of all the data, making sure that each theme was consistent with the thesis’s main plot. (6) producing a report: each theme has been well supported by the researcher, who used specific examples from the used data when appropriate. ethical considerations permission to conduct the research was attained from the humanities and social science research ethics committee (hssrec) at the university of the western cape. an evaluation of ethical standards was performed to safeguard professional practice in the study. this means that the permission permitted the study to adhere to ethical principles designed to determine whether specified actions or developments are right or wrong and giving rules to professionals to avoid professional misconduct was considered (sarantakos 2012). findings and discussion the themes chosen for the study were: body health (physical, mental, and social health), bodily integrity (freedom of movement, freedom from acts of violence), and unrestricted access to healthcare and governmental assistance. the themes came about to better understand and explore the human capabilities and sub-themes across two different capabilities. each capability’s necessary information was divided into distinct sub-themes under each topic (see table 1). the three themes include: (1) the bodily health of parents or caregivers of children with dd, (2) the bodily integrity of parents or caregivers of children with dd, and lastly (3) the governmental assistance to parents and caregivers of children with developmental disabilities in enhancing the human capabilities of parents were presented as findings for the study. table 1: themes and sub-themes. theme 1: bodily health of parents or caregivers of children with developmental disability good health the study’s findings showed that the majority of parents or caregivers understood the value of physical health and had various strategies for ensuring their children’s physical well-being. the term ‘bodily health’ refers to a person’s whole well-being, taking into account all of their physical, mental, social, emotional and spiritual needs for them to thrive rather than just get by abma et al. (2019). nussbaum (2000) argues that maintaining physical health involves being able to live a healthy life, having access to medical care when it’s needed, eating a healthy diet, and being able to exercise. access to good food in a nutshell, nussbaum’s second capability is to be in good physical health and this capability advised sustaining health (magidigidi 2021). one of the participants thought that being healthy was: ‘… eat healthier food which includes fruits and vegetables and some of them have higher protein which will make us live a healthier life.’ (participant 5, 20-year-old, male) to sustain good health, participants stated that they: ‘… eat good food not food with too many fats … eating things that will be beneficial for my health.’ (participant 1, 38-year-old, female) ‘i walk as part of my exercises; walking is a good exercise.’ (participant 10, 51-year-old, female) ‘for mental health, i usually talk with my neighbor, we go to the same church.’ (participant 2, 56-year-old, female) the participants’ response shows that they are aware of what physical health entails. the responses reflect nussbaum’s (2000) discussion of the importance of eating well, being able to exercise and maintaining health. based on nussbaum’s (2011) capabilities approach, this indicates that by emphasising the benefits of being capable of performing healthy acts, the capacity approach may assist in bringing about this change towards healthy eating or active living. this indicates that parents are equipped with the knowledge they need to live healthy lives and utilize the healthy options at their disposal. this shows that parents or caregivers have the capability for physical health so that they can work to maintain the health of their bodies. participants in the study have acknowledged the importance of exercising this capability. access to healthy food, according to nussbaum (2000), is essential. participants demonstrated their awareness of healthy eating; however, many claimed that they are undernourished because good food is expensive. this study explored the bodily health capabilities of parents or caregivers of children with dd. furthermore, as stated by mörelius and hemmingsson (2014), parents of children with dd run the risk of having a lower quality of life in terms of their health, particularly regarding daily tasks, sleep, energy, stressful emotions and social interactions. emotional difficulties such as depression may have an impact on parents who are overseeing and managing the medical condition of their child. the incapability of the family to deal with the child’s impairment may have a greater impact on the parent’s health because emotional stress in the parent may result in emotional and psychiatric stress in the child (hung et al. 2010). the results are in line with those of a study by mörelius and hemmingsson (2014), which showed that when a child had sleeping issues, both parents or caregivers of a child with a physical disability reported decreased health, emotional exhaustion, staying up later and having interrupted sleep. for example, participant 2, indicated emotional and physical tiredness, she mentioned that she was: ‘[u]sually me alone who was taking care of her, so at times i needed help, even though it is scarce but i do need help like to sometimes help me lift him, you see now as he is laying there, i can’t even though i say i can feed him but i can’t lift him by myself. we end up falling together.’ (participant 2, 56-year-old, female) furthermore, when the child has sleep issues, the parents or caregivers reported more headaches. these incidents demonstrate how difficult it is for parents or caregivers of children with dd to raise their children because of the emotional strain that comes with raising a child with dd (mörelius & hemmingsson 2014). this means that participants are therefore subjected to stress and anxiety as some of them are not even fully knowledgeable regarding the disabilities their children have. therefore, it is crucial that the government and non-governmental organisations (ngos) create and strengthen initiatives to assist parents or other caregivers in the kraaifontein and fisantekraal locations in the western cape province. this will enable the caregivers to cope with their situations and consequently increase their capabilities. most of the participants stated that they are unemployed (see table 2). therefore, there is a need for sustainable livelihood projects in the area to give the participants a way to make money to support themselves and the children under them so they can afford to eat well, stay healthy, and have a place to live. table 2: demographics of parents or caregivers. the government as well as ngos working in the kraaifontein and fisantekraal areas need to develop and strengthen support groups for parents or caregivers of children with dd. this will assist the caregivers with emotional support from others with whom they share similar situations. evidence from a study by ignjatović (2019) also indicates that when parents or caregivers receive more outside support, they can experience some relief that could add to the advancement of social interactions between parents, as well as to their parenting. the parents or caregivers will learn and share their experiences with others. the support groups’ facilitators can also engage experts who can educate the parents or caregivers on how they can care for their children with a particular disability. as a result, the parent or caregiver will have a better understanding of the child’s disability and how to help their child live a more fulfilling life. psychologists, social workers and paediatricians can all provide expert assistance. adequate shelter the study’s findings further demonstrated that participants are unable to provide themselves and their children with an appropriate and adequate place to live. participants’ findings suggested that the parents or caregivers and children don’t have access to decent homes. this demonstrates that the living situation the participants rely on is not enough and suitable for them and their children. some participants share a room in a one-room apartment with the children. as a result, a participant clarified this by mentioning: ‘the condition of this house does not accommodate him because our space is small. because he is a person walking in a wheelchair [sic], he does not have space, so he stays in one place he roams in one place.’ (participant 9, 35-year-old, female) while parents were evaluated on their level of health, the majority of participants demonstrated a lack of capability for health, among them one said: ‘i am not emotionally fine. the life that i am living is very painful because other people who have children who do not have disabilities do not live the kind of life that i am living. i feel like i am not living a proper life because most of the time i do not get enough space to be. at times i do think about working but i can’t because of my son’s life. i must look after him. i also have arthritis and it is difficult for me to take my child to the hospital.’ (participant 1, 54-year-old, female) many study participants said they depend on renting a room for themselves and their kids because they do not own a home. gupta et al. (2016) state that it is obvious that social and environmental factors from both the past and the present have a significant impact on a person’s skills. theme 2: bodily integrity of parents or caregivers of children with developmental disability many of the participants argued that their children’s disability prevents them from moving freely from one place to another. freedom of movement most of the time because of difficulties with mobility concerns, they are unable to travel with their children. the participants also mentioned that they were typically at home all the time because they needed to check on their children frequently to make sure they were not injuring themselves. one of the participants said she was unable to go shopping with her 5-year-old autistic child because of her child’s behavioural problem. she went on to say: ‘… i use public transport because it’s accessible to me and affordable …, trains are not traveling properly in fisante, they travel badly and another thing is a taxi is quicker than a train, i am that mother that wherever i go i know i must quickly come back. i don’t have the liberty of staying and shopping around. at least a taxi is quicker, i am not saying it’s the best, it’s what is available to me but it is quicker than any other mode of transport that i can use.’ (participant 8, 47-year-old, female) according to nussbaum’s (2000) capabilities perspective, given that parents or caregivers of children with dd are unable to move freely from one location to another as a result of their children’s circumstances, it might be assumed that they lack bodily integrity. security against violence and discrimination as stated by nussbaum and sen (1993), maintaining one’s physical integrity involves being protected from assault, such as sexual or domestic violence. particularly, several of the participants claimed that because of the health of their children, they had never experienced abuse or any type of discrimination. only a small number of participants, although are protected from violence and discrimination. one participant said the following: ‘… many people always have something to say about my child’s disability, i was very young when i got pregnant with her. at first, i didn’t know that i was pregnant and that’s why i drank so much. people now always judge me because my child has this condition.’ (participant 4, 21-year-old, female) another participant indicated that: ‘when arguing with someone who insulted me about my child’s condition, i was pained because she insulted me about my child.’ (participant 9, 35-year-old, female) the majority of the participants have been made fun of and given harsh remarks. as an illustration, participant 1 disclosed that: ‘yes, i encounter discrimination so much, as a result, we have a case that is still pending in court again. people here in the community refer to him in a very painful manner saying that “that kid who is disabled.”’ (participant 1, 54-year-old, female) as a result, this demonstrates the necessity for programmes or awareness campaigns to promote social cohesiveness and lessen any ongoing danger, violence or prejudice (dsd et al. 2012; alter et al. 2013). theme 3: governmental assistance to parents or caregivers of children with developmental disability in enhancing the human capabilities of parents or caregivers under the capabilities approach, the government has a responsibility to care for its citizens (nussbaum 2000). when asked what kind of support they get from the government or their community, the participants were mostly able to describe the kind of support they get from their immediate surroundings and how it helps them. the majority of interviewees reported that their child’s disability grant was their only source of income or assistance. others referenced receiving free counselling and boxes of groceries as additional types of community help. one parent mentioned that she uses online support services in addition to the one-on-one assistance she receives from the community and governmental organisations to deal with the situation. given that parents’ needs differ, the government must find alternative assistance programmes. as an example, some people prefer financial support over others while others find psychological support to be more beneficial. in the light of this, the government needs a wide range of resources to meet the demands of various parents or caregivers. financial assistance as a result of the care obligations associated with caring for a child with disability, parents or caregivers may find it difficult to find employment, which could ultimately put them under further financial stress (muller-kluits & slabbert 2018). as a result, this section of the study shows the research findings about the community, governmental or non-governmental organisation (ngo) interventions that are available and intended to help the parents or caregivers of children with dd in the researched area. participants in the study reported that they are recipients of a disability allowance from the department of social development. the disability grant is designed to make it easier for parents and other carers of children with down syndrome to meet their needs. participant 1 remarked: ‘[crying], support? …. [tears roll down her face and crying more]. the only support i get from the government is his grant. mine is…. when i’m under a lot of pressure, i take a lot of medication you won’t like it when you see my pills (sobbing, talking with a shaky voice) you will not like it see all my pills. i do go to the doctors and they only give me six (6) months’ grant (voice becomes lower and nose blocked from crying) that period is short, and it ends quickly. i then become worried and hear things in my ears, sometimes it would be like i’m awake but i’m not, maybe it is thinking a lot. so it becomes easier when i get grant support for me, at least i know that money i take as my wages and buy food with it, and then the grant money i can buy all his stuff, clothe him, and feed him and his sister and then i can buy things like electricity so that they can both with hot water. with mine, i take it as my wages, when it is depleted like right now it becomes a problem. there is that month that they skip [sobbing], you see i become free when i have my grant but when i do not have it pains me a lot.’ (participant 3, 32-year-old, female) food support is one of the strategies or tactics used to help parents and carers of children with disability. this aid is frequently provided by the government through the department of social development. to make sure that the parents or caregivers can feed their children, nutritional assistance is provided. one more participant remarked: ‘sometimes they call us into the hall and social development will distribute food parcels although the food items are small and few. sometimes you find it will be only 2 kgs of mealie meal [south african moderately coarse flour made from maize or mealies]and 750 g of cooking oil but then it is not the same it closes a gap.’ (participant 8, 47-year-old, female) counselling the participants experience stress and worry because some of them are dissatisfied with the help that was given to them. results from the study conducted by ignjatović (2019) support the claim that parents of children with disabilities are not receiving the genuine assistance they require. therefore, the government has to provide ngos with funding and support so they can create and improve initiatives to help parents or other caregivers in the kraaifontein and fisantekraal locations in the western cape province. the parent’s or caregivers’ capability will be enhanced as a result of being able to manage their circumstances. the majority of individuals acknowledged being jobless. according to the who (2012), interventions including support groups, group conversations and one-on-one listening can give parents of children with similar disabilities time to share experiences and encourage one another. counselling is a different programme available to parents and carers of children with dd. according to one of the study participants, she seeks counselling anytime she feels overburdened by her circumstances. her response, which included the following, clarifies this: ‘i do go for counseling when i have a lot going on in my mind … finding out that i had a lot of diseases and the condition of my child made me fearful … but because of consistent counseling, here i am today. i go to kraaifontein day hospital and tygerberg hospital for counseling services when i am troubled emotionally.’ (participant 1, 54-year-old, female) to improve the well-being of the entire family, sammon (2018) contends that counselling is crucial for families with children who have difficulties. counselling is beneficial for parents or caregivers of children with dd, according to one study. according to published research (shandra et al. 2008), raising children with disabilities is stressful. to help the parents of children with developmental disabilities, it is necessary to establish effective support groups in the local communities. the national academies of sciences, engineering, and medicine (2016) also stressed the significance of support groups or programmes because they provide parents of children with disability a chance to come together to discuss shared struggles and worries. as a result, the parent or caregiver would be able to encourage one another by sharing their experiences with others who have children with the same impairment through these support groups. limitations a small sample of 11 participants, each of whom was interviewed once, made up this study. this implies that some crucial ideas might have been overlooked or improperly developed. the fact that the phenomenon studied cannot be applied to all groups is another drawback. this is so because just a small portion of people receiving disability care were included in the sample, which was also not chosen at random. limitations in the study were highlighted by the participants’ demographic data, which showed that none of them were both parents or mother and father figure caregivers. the limitations of this study were as follows: there was only one primary parent or caregiver (mother or father) accessible for the study; however, the study intended to interview both the mother and father. there would have been a range of knowledge and understanding regarding the human capabilities of parents or caregivers of children with dd had both parents and caregivers or more male parents or caregivers been present during the study. despite this, the data provided by the participants allowed for data saturation, which appears to adequately convey the human traits and experiences of these parents or caregivers. even though the study did not specifically aim to explore the experiences regarding social class, the findings have shown that almost all the participants were not formally employed because of the disability of the child. prior research has shown that disability is related to socioeconomic background (poverty), even though the study did not specifically aim to explore the experiences regarding social class. only parents or caregivers of children with dd were included in the study. this indicates that not all parents or caregivers of children with other forms of disabilities took part in the study. recommendations the survey found that many of the participants are jobless and unable to hunt for work because they must be constantly present at home to care for their dependent children. this study urges for the development of sustainable livelihood initiatives, such as support groups specifically for parents and caregivers of children with disabilities, which can be supported by local ngos, so that the parents or caregivers can have a reliable source of income to support themselves and their children. this might significantly reduce issues with insufficient food and ill health. as the parents or caregivers will have a source of money, it might help reduce emotional stress. conclusion the human capability of parents or caregivers of children with dd was investigated in this study. according to the study’s findings, parents or caregivers of children with dd are less capable than those of children without disabilities because of underlying reasons such as unemployment, the responsibility of providing for their needs, and higher levels of stress. the ability of the parents or caregivers to care for their children with disability is negatively impacted by this. given that people live independently and there is a great need to strengthen the support networks for parents or caregivers. the capabilities of parents or caregivers of children with dd are likely to be improved if there are strong family and community links. thus, this study comes to the conclusion that there is a need to move away from remedial or welfare assistance and instead put more emphasis on social or communal development methods. acknowledgements this article stems from a published thesis submitted in partial fulfilment of the requirements for the degree of masters in child and family studies in the centre for interdisciplinary studies of children, family, and society, faculty of community and health sciences, university of the western cape. supervisor: professor n. roman co-supervisor: ms. i. sonn. https://etd.uwc.ac.za/handle/11394/8917. the authors would like to acknowledge all participants for welcoming them with warm hands and sharing their stories with them. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors made significant contributions to this article. l.m. conceptualised the study. n.v.r. and i.k.s. supervised the article and l.m. wrote the first draft of the manuscript. duplications and minor changes were reviewed and discussed between n.r.v., i.k.s. l.m. contributed to editing and the final manuscript. all authors reviewed and approved the final manuscript. funding information this work was funded by the national research foundation 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accepted: 27 oct. 2025; published: 08 dec. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: motor neuron disease (mnd) is a progressive and fatal neurodegenerative condition that is increasingly impacting individuals and their families globally. despite being relatively rare, prevalence is rising because of an ageing population, with significant socio-economic consequences, particularly in countries with fragmented healthcare systems, financial challenges, and limited resources and skills. family members often assume the caregiving role, leading to substantial caregiver burden in a context where support is lacking. objectives: against this backdrop and given the scarcity of research on mnd within south african communities, this study aimed to investigate the challenges experienced by caregivers of individuals with mnd. method: we adopted an exploratory and qualitative approach to gain an in-depth understanding of lived experiences. semi-structured interviews were conducted with 17 informal caregivers of mnd patients across south africa. results: the data, transcribed and analysed using thematic analysis, revealed insights into caregiver burden. the objective burdens were physical and financial strain, the impact on caregivers’ social environments, and difficulties with healthcare services. the subjective burdens were perceived loss of love and self, guilt, and emotional impact. conclusion: these findings underscore the profound emotional, social, physical and financial burden of informal caregiving for individuals with mnd, and highlight the urgent need for improved support systems, policy responses and greater societal awareness. contribution: there is a need for further research focused on intervention development and policy reform to alleviate caregiver burden and enhance support services, grounded in caregivers’ lived experiences. keywords: motor neuron disease; informal caregiver; informal care; caregiver burden; lived experiences; thematic analysis; south africa. introduction motor neuron disease (mnd), or amyotrophic lateral sclerosis (als), is a debilitating neurodegenerative condition characterised by the degeneration of upper and lower motor neurons, leading to progressive muscle loss and eventual death (hobson et al. 2016). symptoms include muscle weakness, impaired mobility, speech difficulties and swallowing challenges. median survival ranges from 2 years to 5 years, though some individuals live significantly longer (hobson et al. 2016; verber et al. 2019). the incidence of mnd increases after age 40, with typical onset in the early 60s (bäumer, talbot & turner 2014; lerum, solbrække & frich 2016). as life expectancy continues to rise because of advancements in healthcare, the number of individuals affected by mnd is expected to grow. globally, mnd cases are projected to increase by 69% by 2040, with africa expected to experience a sharper rise of 116% (arthur et al. 2016; united nations department of economic and social affairs 2022). in south africa, those aged 60 and older may comprise 15.4% of the population by 2050 (gallant 2017; solanki et al. 2019). this demographic shift, coupled with limited data, raises concerns about an increase in age-related illnesses such as mnd. henning et al. (2021) identified 203 new mnd cases in the western cape between 2014 and 2018, indicating a growing concern. despite the complexity of care required, there is currently no cure for mnd, and management depends heavily on multidisciplinary teams. in low-resource settings, such care is often inaccessible, placing the burden on families for caregiving (bäumer et al. 2014; orrell & guiloff 2020). informal caregivers, usually relatives, often provide around-the-clock support with minimal professional assistance (thrush & hyder 2014). they face significant challenges, including insufficient medical, social and financial support, leading to strain on their well-being (breen et al. 2007; kipp et al. 2007). south africa’s public healthcare system remains under severe strain, hampered by budgetary constraints, staff shortages, poor infrastructure and long waiting periods (gallant 2017; harris et al. 2011). while private healthcare offers more comprehensive services, it is unaffordable for most, exacerbating healthcare disparities. consequently, informal caregiving remains central to mnd care in the country. informal caregivers of individuals with mnd face a multitude of burdens that are well-documented in international literature but are underexplored in lowand middle-income countries. the psychological burden is particularly severe. in a review of 51 studies, thrush and hyder (2014) found that 73% reported psychological distress as the most common caregiving burden, while trail et al. (2003) found that caregivers scored significantly higher on depression scales than the patients they cared for. financial hardship is another persistent challenge. many caregivers reduce work hours or leave employment entirely, increasing economic vulnerability. the burden is compounded by the high cost of care – estimated at $69 475 annually per als patient in the united states (gladman & zinman 2015) – and the lack of public support systems in countries such as south africa, where only 17.2% of the population have access to medical insurance (statistics south africa 2019). social isolation also emerges as a significant concern. aoun et al. (2012) found that most mnd caregivers provide over 12 h of care daily, often at the expense of relationships and social well-being. physical demands of caregiving – including assisting with mobility, managing equipment and coping with disrupted sleep – contribute to fatigue, illness and even elevated mortality risk, particularly among older caregivers (fredman et al. 2010). despite these intersecting challenges, caregivers in resource-limited settings remain largely invisible in healthcare planning and unsupported in practice (malakoane et al. 2020). understanding these layered burdens is essential to designing interventions that support both patients and those who care for them. it is within this context that the current study seeks to explore the multifaceted burdens – psychological, social, physical and financial – experienced by informal caregivers of mnd patients in south africa. to the best of our knowledge, this study represents the first qualitative inquiry of its kind focused on south african caregivers aged 18 and older, offering vital insights into a critically understudied area of care. research methods and design participants the study included 17 informal caregivers of people living with mnd, all of whom identified as white people. the sample was predominantly female (95%), aged 31–76 years (median: 53). most (94%) cared for male recipients and had a direct familial tie, including wives (n = 10), daughters (n = 2), a sister, a husband, a granddaughter, and two women who were in a relationship with the patient. regarding marital status, 11 were married or in a relationship, 4 were widowed and 2 were single. employment varied: 7 were employed, 3 self-employed, and 7 unemployed. 14 participants had children while caregiving. caregiving duration ranged from 7 months to 4 years (average: 2 years, 2 months). at data collection, 76.5% were still actively caregiving, while 23.5% had completed their role because of the care-recipient’s death. interviews interviews were conducted online because of caregiving demands, with one held in person. interviews lasted 45 to 90 min, were recorded digitally and transcribed verbatim. a semi-structured format was used. the first section invited participants to share their caregiving experiences, from diagnosis to daily challenges, while the interviewer ensured focus and opportunity for emotional expression. the second section addressed predefined topics such as emotional and physical burden, financial strain, social support, coping mechanisms and healthcare experiences. the guide was refined throughout to support comprehensive data collection. while it provided structure, interviews remained flexible to capture individual perspectives. data analysis the analysis followed a systematic approach, beginning with familiarisation through re-reading transcripts and revisiting recordings. braun and clarke’s six-step thematic analysis method was applied (braun & clarke 2006). in the initial phase, we generated codes by identifying key concepts. these were grouped into broader themes, which were reviewed and refined through multiple analysis rounds. redundant or irrelevant themes were discarded. in the final phase, themes were applied to the full dataset and validated by revisiting transcripts to ensure accurate representation of caregiver experiences. this process resulted in a refined set of themes presented in the final report. ethical considerations ethical clearance to conduct this study was obtained from the psychology departmental ethics screening committee (desc) and the health research ethics committee of stellenbosch university (no. s23/04/089). because of the study’s sensitive nature, ethical protocols ensured participant well-being and confidentiality. distressed participants were offered immediate termination of interviews and referred to no-cost support services, including lifeline and the south african depression and anxiety group (sadag). follow-up support was provided when consented to. participants were informed that pseudonyms would be used in all outputs, and detailed information was given regarding recording, transcription and data access procedures. results to interpret the patterns of caregiver burden identified in the data, we applied hoenig and hamilton’s (1966) framework of objective and subjective burden of care. lack of knowledge about motor neuron disease a notable challenge reported by informal caregivers was their limited understanding of mnd, compounded by broader community ignorance. for many, the initial diagnosis brought confusion and uncertainty. participants described the disease as very confusing and caregiving as new territory that they had to navigate with little preparation. several stressed the absence of formal instruction, saying they themselves: ‘… literally had to learn everything’. (p1, 63, female) ‘… there’s no textbook on how to care for an mnd patient, especially one on life support.’ (p1, 63, female) most caregivers relied on trial and error to manage complex needs; only one had the rare chance to attend a workshop. this knowledge gap contributed significantly to emotional distress, with one caregiver describing the experience as: ‘… becoming numb with the realisation that i really don’t know how to do this … what am i doing right, what am i doing wrong?’ (p2, 70, female) communication challenges with care recipients heightened feelings of isolation. beyond personal knowledge gaps, caregivers highlighted public misunderstanding of mnd as a major obstacle. one caregiver stated: ‘… people are sympathetic but not really understanding because there’s not much knowledge about what this is.’ (p3, 31, female) another participant described difficulties with institutions, yet staff often failed to accommodate these limitations, explaining that: ‘… when you have mnd, you can’t sign, and you can’t speak.’ (p4, 48, female) misidentification of mnd as other, more familiar conditions, such as multiple sclerosis, further demonstrated the widespread lack of awareness and contributed to caregiver frustration. participants strongly emphasised the need for increased public and professional education regarding mnd. these narratives illustrate not only the practical difficulties associated with caring for an individual with mnd but also the urgent need for greater societal awareness, professional training and systemic support to meet the unique demands of mnd caregiving. loadshedding another challenge experienced by informal caregivers of individuals with mnd in south africa was the persistent issue of loadshedding. loadshedding, often experienced in developing countries as a result of limitations in electricity generation capacity, involves scheduled power outages that disconnect large sections of the grid, leaving households without electricity for extended periods (oluwasuji et al. 2020). for mnd caregivers, this disruption posed life-threatening risks because of patients’ dependence on electricity-powered medical equipment. one such device is the bilevel positive airway pressure (bipap) machine, a non-invasive ventilation system essential for supporting the breathing of mnd patients. during outages, bipap machines become inoperable, triggering intense anxiety and panic among caregivers. one caregiver recalled: ‘he used to get suffocated with the bipap when the power went off. i’d be at the chemist and just freak out, calling home to make sure they’d taken it off in time.’ (p5, 76, female) the psychological burden of these outages was considerable, leaving caregivers in a constant state of hypervigilance and fear. even attempts to mitigate these risks by using inverters were often insufficient. one caregiver explained: ‘the inverter with all the machines only lasts under 2 h, but loadshedding can go on for six.’ (p6, 49, female) this unpredictability compounded psychological distress, forcing caregivers to manage both the physical consequences of outages and the ongoing emotional strain of being constantly on alert. caregivers unanimously felt that solar power was the only sustainable solution, offering reliable electricity and much-needed peace of mind amid the ongoing energy instability. difficulties with medical staff caregivers of individuals with mnd expressed deep frustration and emotional exhaustion over interactions with medical professionals. a common theme was a lack of empathy, guidance and understanding. doctors were often described as blunt and uncommunicative, with little regard for the emotional impact of a terminal diagnosis. one caregiver recounted the doctor’s detached delivery: ‘it is a terminal disease and he probably has 8 months to 5 years to live [before ending the consultation, leaving the family to] go and google this disease.’ (p7, 49, female) another likened the experience to being: ‘… dropped in the middle of the ocean and left for the sharks.’ (p1, 63, female) such encounters heightened distress and isolation. nurses, too, were often untrained in mnd care, adding to caregivers’ burdens. participants described having to guide staff on basic procedures, such as preventing pressure sores or communicating with non-verbal patients. one caregiver recalled a nurse asking her to spell ‘motor neuron’ to look it up online. misperceptions about patients’ cognition were common, with staff sometimes treating patients as ‘stupid’, despite their being cognitively intact. one caregiver shared how her sister, unable to speak, mouthed that she was hungry, only for nurses to ‘laugh and walk away’. these dismissive and dehumanising interactions fostered mistrust. in one instance, a caregiver’s concerns were dismissed until she reminded staff: ‘you’re not dealing with a dog that you wheel into theatre … she’s a human being with feelings and emotions.’ (p6, 49, female) another participant described the experience as ‘very robotic’ and lacking support, comfort and empathy. perceived loss caregivers reported that mnd profoundly disrupted spousal relationships, replacing emotional intimacy with clinical responsibility. many described the painful shift from partner to caregiver, feeling ‘cut off’ and emotionally estranged. fleeting moments of normalcy were overshadowed by caregiving demands: ‘you get a bit of normal when socialising, but then it’s back to the daily grind.’ (p8, 55, female) several participants noted that caregiving consumed their identity, creating role confusion and exhaustion. one explained: ‘some days you’re a caregiver, some days a friend, and some days maybe a partner – but it’s difficult.’ (p7, 49, female) intimacy eroded under the weight of daily care tasks: ‘when you’re dealing with poop and stuff, it does change things.’ (p8, 55, female) this burden extended to caregivers’ sense of self, with grief over lost interests and identities. one said: ‘i’ve lost interest in things i used to love … too many balls to juggle.’ (p6, 49, female) another added: ‘i don’t even get half an hour a day to myself.’ (p9, 60, female) former hobbies and self-care were sacrificed, leading to personal depletion: ‘i don’t feel like i’m 100% anymore.’ (p3, 31, female) collectively, these accounts highlight the psychological burden of caregiving: loss of intimacy, identity erosion, and ongoing emotional and physical strain, compounded by limited support. physical burden informal caregivers experienced significant physical strain, mainly because of disrupted sleep and constant nighttime caregiving demands. many described waking up hourly to assist with basic needs, leaving them exhausted during the day. one caregiver shared: ‘i’m literally awake every hour checking on him.’ (p1, 63, female) balancing work and caregiving compounded this fatigue: ‘by the time i drive an hour in traffic and start the evening routine, then i’m further drained.’ (p10, 38, female) in addition to fatigue, caregivers experienced physical strain from lifting and assisting their loved ones, often leading to back and neck problems. one caregiver noted: ‘i neglected my own health because of my husband’s illness.’ (p5, 76, female) poor posture over time aggravated these issues: ‘my head is always tilted because i have to maintain eye contact or observe him.’ (p1, 63, female) some participants received medical warnings about potential long-term health impacts, including autoimmune diseases, because of a lack of rest. despite this, finding time for self-care or medical attention was challenging. one caregiver explained: ‘i’ve had a bad knee for 2 years … i was more concerned about him.’ (p5, 76, female) while one male caregiver reported becoming fitter because of the physical demands, the overall toll on caregivers’ health and well-being was considerable. one concluded: ‘by the time i go to bed, there’s nothing left.’ (p10, 38, female) social burden caregivers of individuals with mnd experienced significant social burden, marked by isolation, strained relationships and emotional fatigue. all participants reported a decline in social life because of caregiving demands. even brief moments of socialisation were overshadowed by guilt and anxiety. one caregiver shared: ‘i always felt guilty because you didn’t know how much time you had left with them.’ (p5, 76, female) while another said: ‘it was difficult to socialise and pretend to be happy … it was more torture for me than enjoyment.’ (p6, 49, female) many described increasing isolation, both practical and emotional. one participant explained: ‘i literally go to spar, go to the chemist … and i’ll come home. so i don’t actually interact with anybody really.’ (p11, 70, female) others withdrew socially for extended periods: ‘i didn’t do anything for the 1st year because i cared for him on my own with the kids’ help.’ (p10, 38, female) time constraints and exhaustion left caregivers without energy or opportunity to engage socially. participants also expressed anxiety about emergencies occurring while away, stating: ‘nobody will know what to do if there’s a crisis.’ (p1, 63, female) furthermore, asking others for help often provoked guilt: ‘i just feel that i can’t burden everybody every time … it’s not fair.’ (p6, 49, female) physical accessibility also posed challenges with: ‘… not many places are wheelchair friendly.’ (p12, 53, female) even when socialising was possible, caregivers noted strict time limits: ‘everything’s got a maximum of 2 h … he gets way too tired after that.’ (p4, 48, female) the combined effects of isolation, fatigue and strained relationships left caregivers feeling detached from their communities. one participant concluded: ‘it is like we are just left alone to deal with this and make our own plan.’ (p7, 49, female) financial burden participants consistently reported severe financial strain following an mnd diagnosis. all care recipients had been employed before diagnosis, and the resulting loss of income placed immense pressure on families. this burden was worsened by the high cost of essential equipment and ongoing medical expenses. caregivers highlighted the unaffordability of medication, described as ‘exorbitantly expensive’, alongside specialised equipment required for care. financial strain was further compounded by emergency medical needs and limited medical aid coverage. one caregiver reflected: ‘it turns out that my mum saved every penny of her life for her life, in order to facilitate the end of her life. she didn’t get to enjoy her money at all.’ (p4, 48, female) medical aid schemes in south africa were widely seen as inadequate. participants reported being denied funding for essential items and services, including communication devices and home-based care. one caregiver remarked sarcastically with frustration: ‘communicating with your doctors and your family’s a luxury, hmm.’ (p6, 49, female) participants also expressed a sense of abandonment by the healthcare system and called for policy reform to better support families affected by mnd. emotional burden caregivers of individuals with mnd experienced a range of emotional burdens, including anxiety, depression, anger and guilt. anxiety was constant, driven by fear and uncertainty. one caregiver stated: ‘every phone call, you think, is this it?’ while another said, ‘i dread falling asleep because i’m afraid of waking up and what the next day will bring.’ (p11, 70, female) depression was also common, with caregivers describing persistent sadness and anticipatory grief: ‘it’s like physically watching your loved one slowly being eaten away.’ (p13, 49, male) anger and frustration arose as caregivers grappled with life changes. one said: ‘you want to really give the ***ing universe a finger. ‘ (p11, 70, female) while another admitted: ‘i can really lash out when i’m in an angry state.’ (p14, 48, female) though mentioned less often, guilt remained a burden. some participants felt torn between caregiving and other roles: ‘i often feel guilty because i can’t do many activities.’ (p14, 48, female) others questioned their adequacy: ‘i just don’t think i’m cut out to be a nurse.’ (p8, 55, female) together, these reflections highlight the psychological toll of caregiving: chronic emotional strain, grief and inner turmoil, underscoring the need for greater emotional support. discussion this study aimed to deepen the understanding of informal caregiving for individuals with mnd, aligning with prior research by kavanaugh, henning and mochan (2021). it revealed that caregivers experience diverse subjective and objective burdens shaped by contextual factors. this discussion compares the results with existing literature to enhance caregiving insights. circumstantial challenges caregiving for individuals with mnd is impacted by both the disease’s demands and caregivers’ personal and environmental circumstances. this study uses ‘circumstantial challenges’ to describe these burdens. most participants were women with a median age of 53, similar to international findings (conroy et al. 2021; galvin et al. 2018). younger caregivers balancing work and children reported higher stress, while older, often retired caregivers experienced less burden (chiao, wu & hsiao 2015). women described more emotional strain, reflecting previous research (revenson et al. 2016). these factors compound the challenges of mnd caregiving. limited knowledge about mnd added to emotional and practical strain. participants reported confusion about the disease, echoing international literature (tang et al. 2021). the lack of accessible information in south africa worsened this, highlighting the need for educational interventions (alankaya & karadakovan 2015). this knowledge gap led to self-doubt among caregivers, while poor community awareness created additional administrative challenges. a unique challenge was loadshedding, previously unexplored in caregiving research. power outages heightened anxiety, especially for those using power-dependent medical devices. this finding aligns with bentley (2023) and marchetti-mercer (2023), who noted loadshedding’s psychological distress. this study extends those findings by showing caregivers’ fear of life-threatening risks during outages. alternatives such as inverters were often unaffordable, underscoring the need for reliable power. experiences of objective burden the objective burden of care includes tangible demands such as time, physical effort and financial costs (jones 1996), which are central to the caregiving experience and linked to perceived burden (gallant 2017). schene, tessler and gamache (1994) identify four areas this burden manifests: (1) direct caregiving tasks, (2) indirect responsibilities, (3) managing emotional needs, and (4) daily life disruptions. this study’s findings reflect all four. physical strain was common, with caregivers reporting exhaustion, musculoskeletal pain and injuries, especially older women caring for larger male patients, consistent with mnd’s higher male prevalence (daude & chowdhury 2017; henning et al. 2021). sleep deprivation and stress worsened these issues, with women more vulnerable than men (revenson et al. 2016). social disruptions and indirect responsibilities were significant. caregivers experienced isolation because of a lack of time and energy for social life, avoiding events because of guilt, a lack of enjoyment and mental preoccupation (thrush & hyder 2014), all of which indicate the impact of caregiving on physical and social well-being. financial strain was another major burden. most caregivers lost income, with many leaving jobs for full-time care. medical and equipment costs were high, compounded by limited welfare support and exclusion of mnd from medical aid ‘dreaded disease’ lists, leaving caregivers unsupported (malakoane et al. 2020; statistics south africa 2019). healthcare difficulties further compounded the objective burden. caregivers described poor support from professionals at diagnosis and post-diagnosis (aoun et al. 2016; o’brien et al. 2011). limited resources and high patient load in south africa’s health system likely contribute to care gaps (kipp et al. 2007). untrained staff and occasional unprofessional conduct increased strain, with caregivers sometimes providing basic care themselves (kisorio & langley 2019). these findings highlight the urgent need for improved mnd training, communication and empathy among healthcare providers to support patients and caregivers. experiences of subjective burden subjective burden refers to caregivers’ personal evaluations of their circumstances and the perceived demands of caregiving (liu, heffernan & tan 2020). schene et al. (1994) describe subjective burden as distress, guilt, worry, shame and stigma, often triggered by caregiving’s physical and logistical demands. in this study, caregivers reported subjective burdens across daily life, encapsulated in three themes: loss of self and love, guilt, and emotional strain. the first theme was a perceived loss of self and love, especially among spousal caregivers. participants described sacrificing careers, social lives and interests, resulting in diminished identity. nearly half of those in relationships noted reduced affection as roles shifted from partner to caregiver. this loss of intimacy led to emotional fatigue and loneliness (oh, kim & chu 2021; thrush & hyder 2014). though not a traditional sub-theme, this loss regularly triggered distress and relational strain, thereby justifying its inclusion. guilt also emerged as a prevalent emotional response. caregivers stated that they felt guilty for prioritising their needs or comparing themselves to others. guilt, as defined by losada et al. (2010), arises from perceived failure to meet expectations. a lack of support intensified these feelings, increasing self-blame and exhaustion (muro pérez-aradros et al. 2023). evidence suggests that psycho-educational interventions that build confidence and knowledge may help reduce guilt and improve caregiver coping (gallego-alberto et al. 2021; theißen et al. 2024). the broader emotional impact included persistent worry, sadness and frustration, especially during diagnosis. notably, 88% experienced delayed diagnoses, higher than global averages, exacerbating distress and reducing trust in healthcare (donaghy et al. 2008). emotional strain remained high throughout the disease trajectory, with many caregivers describing symptoms of depression and psychological overwhelm (soundy & condon 2015; trail et al. 2003). these needs were often overlooked, reinforcing what adelman et al. (2014) call the ‘invisible patient’. worry was linked to mnd’s unpredictable progression (flemming et al. 2020). many caregivers also reported frustration with loss of autonomy, but often suppressed these feelings, intensifying distress. a thorough understanding of subjective burden is key to effective intervention. braithwaite (1992) argues that recognising internal experiences reveals stressors often overlooked by focusing on objective burden alone. themes such as loss of self, guilt and emotional fatigue should inform support strategies addressing both visible and hidden aspects of caregiving. strengths and limitations this study addresses a gap in south african research by exploring adult informal caregivers of individuals with mnd, a group often overlooked in favour of younger caregivers or high-income country populations. it provides local insights into caregivers’ emotional and practical challenges in a resource-limited context and lays a foundation for future intervention research. using interviews enabled rich, nuanced data, enhancing the authenticity of participants’ accounts. however, the small, mostly female and racially homogenous sample limits generalisability. the demographic composition of the participants, predominantly white, female caregivers, likely reflects a more resource-advantaged subgroup within the broader south african context, which may have influenced the perspectives and challenges reported. participants were self-selected, and most were from urban areas, which may not fully reflect the experiences of caregivers in rural regions. as the study focused solely on the perspectives of informal caregivers, data from other relevant stakeholders, such as healthcare professionals, policymakers and individuals living with mnd, were not collected. this limits the ability to capture a more holistic understanding of the caregiving experience. the lack of local mnd caregiving literature made contextualising findings challenging, and conducting interviews exclusively in english may have excluded some participants. additionally, most interviews were conducted virtually, which, while necessary for accessibility, may have influenced participant comfort and the depth of responses. recommendations further studies, including quantitative research and formal needs assessments, are urgently needed to better support informal mnd caregivers in south africa. given that this study was based on a small, relatively homogeneous sample of predominantly white, female caregivers, the recommendations below should be interpreted within this demographic context. the insights primarily reflect the experiences of caregivers with similar socio-economic and cultural backgrounds and therefore require validation across more diverse populations. this study revealed significant emotional, financial and systemic burdens, including inadequate post-diagnostic support, lack of empathetic healthcare and high isolation. findings highlight the need for psycho-educational interventions and accessible support groups to address caregivers’ distress and lack of guidance. to enhance the practical implementation of such initiatives, collaboration among key stakeholders, including the department of health, ngos, professional training institutions and community-based organisations, is recommended. improved healthcare professional training is recommended to raise awareness and responsiveness, as poor communication and mnd knowledge were common concerns. community awareness initiatives are needed to reduce stigma and exclusion. however, these proposed interventions should be viewed as preliminary and most applicable to caregivers similar to those represented in this study. broader research involving caregivers from varied racial, linguistic and socio-economic groups, as well as perspectives from other stakeholders, is essential to further refine and generalise these recommendations. furthermore, financial support, such as equipment subsidies and medical aid reforms, is essential to ease costs and employment sacrifices reported by many caregivers. future policy work should consider the feasibility and equity implications of these recommendations across the diverse south african caregiving population. conclusion informal caregiving for individuals with mnd has a profound emotional, social and financial impact. this study underscores the urgent need for improved support systems, policies and societal understanding to improve the well-being of caregivers. by addressing these gaps, we can work towards building a more inclusive and compassionate society for both caregivers and care recipients in south africa. acknowledgements this article is based on research originally conducted as part of bailey allan’s thesis entitled ‘caring for people living with motor neuron disease: a qualitative study of challenges and coping among informal caregivers in south africa’, submitted to the department of psychology, stellenbosch university, in 2024, with supervisor ashraf kagee. the manuscript has since been revised and adapted for journal publication. the original thesis is available at: https://scholar.sun.ac.za/items/bdf1e44d-70d2-4e38-97c5-5ac769b9c88c competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. credit authorship contribution bailey allan: conceptualisation, methodology, writing – original draft. ashraf kagee: methodology, writing – original draft, writing – review & editing. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are not openly available because of the sensitivity, and are available from the corresponding author, ashraf kagee, upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors 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introduction professor swartz’s influence on my entry into disability studies reflections on lessons from disabled children’s childhood studies and psychoanalytical approaches to disability exclusion conclusion acknowledgements references about the author(s) zara trafford institute for life course health research, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation trafford, z., 2025, ‘disabled children’s childhood studies in south africa: challenging deficit-centric perceptions’, african journal of disability 14(0), a1693. https://doi.org/10.4102/ajod.v14i0.1693 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper disabled children’s childhood studies in south africa: challenging deficit-centric perceptions zara trafford received: 19 feb. 2025; accepted: 23 may 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction in south africa, social assistance programming was originally instituted for only the white minority population. welfare benefits focused on poverty alleviation and support for disability and old age but functionally excluded most of the population. in 1992, as apartheid began to dismantle, eligibility for these programmes was extended to the whole population, and the number of people potentially eligible for support increased quickly and exponentially (delany et al. 2005). today, the population groups eligible for such social assistance cash transfers include war veterans, pensioners, children living in very low-income families, and adults and children with disabilities. the south african adult disability grant (dg) may be particularly familiar to scholars in african disability research, as it has been thoroughly investigated and reported on, including in publications in this journal (hanass-hancock & mckenzie 2017; hanass-hancock et al. 2017; hansen & sait 2011; kagee 2014; kelly 2013, 2016; knight, hosegood & timæus 2013; schneider et al. 2011; schnitzler 2020). also well-documented in a substantial literature is the child support grant (csg), which was first initiated in 1998 (granlund & hochfeld 2020; hajdu et al. 2020; oyenubi 2021; patel 2011; patel, hochfeld & chiba 2019; patel, knijn & van wel 2015; zembe-mkabile et al. 2015, 2022). much less prominent in the social protection literature, however, is the care dependency grant (cdg), the childhood counterpart of the adult dg. this gap motivated a central focus on the cdg for my doctoral research, which was a qualitative study of the perspectives of multiple stakeholders including south african social security agency officials, medical doctors who conduct eligibility assessments for the cdg, caregivers in receipt of the cdg and key informants from national government, academia and civil society. i used semi-structured in-depth interviewing to gain insight into varying understandings of the purpose of the cdg, as well as issues around access to and the administration of the cdg. these data were complemented with an extensive desk-based review of legislation and relevant literature from 1977 to date. i conducted all data collection, verbatim transcription and analysis myself. thematic analysis was supported by a combination of inductive and deductive coding. further details of the methodological and ethical procedures used in this study were documented in prior publications (trafford 2023a; trafford 2023b; trafford & swartz 2021, 2022). recipients of the cdg report its considerable value to the beneficiary child and their family (dimhairo 2013; letsie 2016; trafford 2023a). this seems an obvious area for urgent intervention and potentially, the expansion of benefits for this group, which could have a powerful effect on supporting disabled children’s developmental potential, as is well-documented for the csg. instead, research over the last three decades has consistently reflected comparatively very low beneficiary numbers and insufficient change in the prospects and circumstances of children with disabilities in south africa (chataika & mckenzie 2013; kleintjes et al. 2022; martin, proudlock & berry 2014; mckenzie & chataika 2017; philpott 2014; philpott & muthukrishna 2019; sadiki 2022; saloojee et al. 2007; shung-king et al. 2019, 2000; south african government 1996). in trying to understand details of the administration and distribution of the cdg, i also researched wider dynamics around this cash transfer including disability stigma, socialisation in disabled children’s lives, and the wider landscape of service provision, access and participation for these children and their families in south africa. these investigations raised an important question: why are disabled children and their caregivers in low-resource environments still so neglected and excluded, despite their obvious and relatively uncontroversial need for state support? next, i describe the role that leslie played in my professional development, before closing with a short discussion based on my doctoral research that reflects on why access is still so difficult, why necessary change has happened so slowly, and why disability-related service provision is still deeply exclusionary despite strong ideological commitments. professor swartz’s influence on my entry into disability studies i met prof. swartz in 2019, when i had decided to pursue a research career but felt uncertain about which direction to take in a saturated field. prof. swartz gave a ‘whistlestop’ introductory lecture on disability studies. through his linking together of diverse methodological and conceptual approaches to disability research, i realised that i could make a real contribution in this field. his lecture helped me to see that disability studies was an ideal place to deepen my persistent interest in equity and marginalisation, as well as social constructions of normality and abnormality, and investigations of the immense power these constructions have in shaping people’s lives and opportunities. in our early discussions about my doctoral work, prof. swartz suggested that the cdg would be an ideal focus for the exploration of my research interests at the intersection of childhood, wellbeing, disability and economic poverty. he understood that i wanted to use my professional research skillset to contribute directly to policy making, stronger implementation of policies and human rights advocacy, and knew that there was a notable gap in the social protection literature. he also realised that while pursuing a career in practical and applied research, i also wanted to think more deeply about the underpinnings of the patterns i observed. his detailed and long-term knowledge of the field of disability studies both globally and in south africa was an invaluable resource, and one which he shared graciously. the opportunity to rapidly produce findings on the cdg (including documenting its full legislative history), to translate this work into reflections and insights that are useful to people working in policy and to advocate for the increased visibility and recognition of this especially marginalised group, would not have been possible without prof. swartz’s perspicacious guidance. in the sub-section that follows, i present reflections from my doctoral research, which highlight the ways in which the narrow and inaccurate beliefs of non-disabled adults tasked with making decisions can limit the possibilities available to children with disabilities in contemporary south africa. these ideas were influenced by the field of disabled children’s childhood studies and psychoanalytical frameworks for unpacking disability stigma. reflections on lessons from disabled children’s childhood studies and psychoanalytical approaches to disability exclusion early in desk-based research towards the phd, it occurred to me that although the cdg represents a key opportunity for the state to ameliorate the excessive direct and indirect costs of disability, in-depth investigations of disabled children’s needs and situation were relatively absent from discourses in social protection policy, legislation and secondary literature. there is a body of research focused specifically on the rights of disabled children in south africa, particularly in relation to their healthcare needs. within the mainstream literature on education, health access, and social protection, however, disabled children usually only feature as one of a list of ‘vulnerable’ groups. in many instances, these investigations into areas relevant to all children’s lives do not engage more deeply with the experiences of disabled children beyond noting their need for additional support. the cdg has also been overlooked in quantitative assessments of the re-distributional effects of the overall cash transfer programme in south africa, with the rationale for this usually being its comparatively low beneficiary numbers. this pattern recurred during my data collection, when stakeholders from all groups commented on the systemic neglect of disabled children and a notable lack of progress in service delivery for this group. one key informant participant in my phd study who had worked in social protection in africa since the late 1980s reported that cdg recipients were ‘a largely invisible group in [social protection] debates [and] scholarship’. another key informant with a long history of working with government to support disability grant implementation and research commented that because beneficiary numbers were low and there was so much concern about high adult dg beneficiary numbers, ‘the conversation was never around the care dependency grant’. this participant further explained that the cdg ‘was always a little on the fringes’ of such discussions. these and other participants argued that disabled children do not appear to have received sufficient or sustained attention in social protection programming, especially when compared with economically marginalised non-disabled children and disabled adults. in most countries today, citizens’ access to their human rights are often contingent on a set of implicit or explicit ‘responsibilities’ that are defined by the ideological, historical, and socio-political landscape of that country. citizenship has traditionally been ‘universal for the minority rich, regulated according to market inception for the working class and middle class, and denied to the majority of poor and marginal populations’ (biehl 2001:136). when adults do not participate in the labour market, they can be framed as deviant or ‘irresponsible’, making their claim to state support tenuous in a pattern which has been documented in relation to disability in both india and south africa (chaudhry 2019; schnitzler 2020). the conscious or unconscious belief that disabled children may never be able to be ‘responsible’ citizens or join the economy ‘in exchange for’ their rights may contribute to the lack of public investment in opportunities for their support and development. in turn, both education and employment are profoundly disability-exclusionary. as key thinkers both internationally and in south africa have argued, these exclusions further fuel the perception that disabled children have little developmental potential, thereby denying their ‘imagined futures’ (chataika & mckenzie 2013; curran & runswick-cole 2014; goodley & lawthom 2013; mckenzie & mcleod 2012; runswick-cole & goodley 2018; runswick-cole, liddiard & curran 2018). the sharp distinction between the value of non-disabled and disabled children’s lives – and the resulting effects on service provision and investment – is not unique to south africa. in 2022, it was reported that ‘only 2% of the estimated us$79.1 billion invested [globally] in early childhood development [from 2007 to 2016] … was spent on [children with developmental] disabilities’ (the global research on developmental disabilities collaborators 2022). although the same report showed that the chance of a child being disabled is now ‘at least ten times higher than that of dying before the[ir] fifth birthday’, there appears to be little investment in what happens after these children are born. both globally and nationally, there appears to be more of an emphasis on ensuring disabled children’s survival at birth than on the quality of their lives once they are born (moodley 2021). these patterns are not necessarily intentional or malicious. however, when non-disabled adults who design and implement policy for disabled people look at (or ‘gaze upon’) children with disabilities and their families, their own projections of fear and fascination may prevent them seeing beyond the supposed tragedy of these children’s lives. one of my participants summarised this phenomenon well, sardonically explaining that ‘a disabled child is not a child’. when children with disabilities are only seen as inherently separate from non-disabled children, their child identity is obscured by their disabled identity – but both dimensions of their identity are important, and they are intertwined. when perceived only through the lens of the (still dominant) deficit model of disability, disabled children are looked at but never really seen (garland-thomson 2006, 2009; lourens & swartz 2016; watermeyer 2006, 2018; watermeyer & swartz 2008). perceptions of disabled children’s lives as exclusively tragic are informed by the widely-held societal belief that healthiness is necessary for living a good life, and conversely, that the lives of ‘people with “errant” bodies … are not worth living’ (watermeyer 2013:18). such beliefs may make it harder for decision-makers to see disabled children as whole people, to feel empathy for their experiences, and consequently, to mobilise sufficient resources for closing persistent gaps in access and inclusion. conclusion we need to think more deeply about how to improve the quality of the lives of disabled children and young people in south africa. viewing a disabled child only through a lens of assumed infirmity and tragedy, both their ‘child-ness’ and their ‘humanness’ are obscured. this distances the country from our stated goal of embedding awareness of environment, impairment, and life-stage into any view of disability, and particularly, any intervention aimed at equitable service provision. as goodley, runswick-cole and liddiard (2016) note in their ‘analysis of the affirmative possibilities given by attending to the lives of disabled children’ (p. 770), we must work to understand how structural forces constrain the optimal development of disabled children, especially those who are also living in low-resource environments. however, this can unintentionally lead to false binaries, as epitomised by dominant media and sociocultural portrayals of childhood disability. the latter tend toward so-called ‘pity porn’ or ‘inspiration porn’: exaggerated depictions of disabled children as either extremely and inescapably tragic, or superhuman in their capacity to transcend impairment ‘despite the odds’. obviously, there are many non-disabled people who do not engage with disabled people in homogenising and invisibilising ways. but while sociocultural phenomena may not apply to each person within a society, they will certainly affect general perceptions of marginalised or non-dominant groups. what is missing in these homogenised and binary representations of disabled children is what prof. swartz has called ‘[the reality] of disabled people leading ordinary lives … neither abject nor miraculous, but both complex and mundane – like the lives of most people’ (swartz 2018:282). with prof. swartz’s support, i tried to push back against the dominant deficit-centric narrative by presenting novel data in my final phd chapter that reflected the narratives of caregivers who had shared their experiences with me so generously. i asked questions about their best memories with their disabled child, their hopes for this child’s future and what they loved about being together. this revealed stories of close bonds, caregivers’ determination to communicate and connect despite rigid barriers, and children with clearly defined personalities and strong desires and opinions. seeking out and sharing these more diverse, real and human portrayals of children with disabilities (maronga-feshete, pilusa & dreyer 2024), while still sounding the alarm about their material deprivation, may help to challenge the over-simplified portrayals of their lives that dominate non-disabled people’s perceptions. in his own research and in the work he has supervised, prof. swartz has taken a clear ideological position on the importance of fairness and social justice (hlongwane et al. 2022; swartz 2012, 2023), and the value of locally specific, relevant research (keikelame & swartz 2019; ned, dube & swartz 2022; ned, johannah keikelame & swartz 2022; swartz 2014, 2018, 2022). he has centred the voices and experiences of disabled people themselves, at different life-stages and in different contexts (bantjes et al. 2015a, 2015b; lourens & swartz 2016; mcdougall et al. 2006; mkabile & swartz 2020; schneider et al. 2011; vergunst et al. 2015; watermeyer & swartz 2008). prof. swartz has pursued applied research, working closely with policymakers and those involved in implementing policy and developing programmes across the continent, but has balanced this with philosophical and psychoanalytical theorisation about the root causes of social exclusion and how we might address these. this volume will demonstrate the enormous breadth and depth of prof. swartz’s intellectual engagement, but his work has also been consistently honest, accessible and pragmatic. these qualities are uncommon and, to me, particularly impressive. as a supervisor and colleague, his thoughtfulness, efficiency and generosity of time and intellectual insight have been invaluable. i intend to build a long-term career in african disability research and in the process, try to emulate prof. swartz’s remarkable approach. halala, leslie, and thank you. acknowledgements the author would like to thank their phd supervisor, leslie swartz, for his guidance and support through all stages of the research reflected upon in this article. the author would also like to acknowledge the energy and openness of all of their participants, who gave generously of their time during the highly stressful coronavirus disease 2019 (covid-19) lockdowns and beyond. this article is partially based on the author’s thesis entitled ‘invisibility, informality and impropriety: multi-stakeholder perspectives on the implementation and administration of south africa’s care dependency grant for children with disabilities’ submitted in partial fulfilment of the requirements for the degree of doctor of philosophy in the faculty of arts and social sciences at stellenbosch university, south africa with supervisor prof. leslie swartz in december 2023. competing interests the author reported that they received funding from wellcome trust which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. the author, z.t., serves as an editorial board member of this journal. z.t. has no other competing interests to declare. author’s contribution z.t. is the sole author of this research article. ethical considerations ethical permission to conduct this study was obtained from the stellenbosch university research ethics committee for social, behavioural and education research (rec: sber) (project number: 13097). funding information the research that informed this reflective article was supported by the wellcome trust (grant number: 217821/z/19/z). data availability the data that support the findings of this study are available on request from the corresponding author, z.t. the data are not publicly available because of restrictions imposed during data collection, which guaranteed anonymity for participants. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder 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feeding my child”: foodways of primary caregivers of child support grant recipients in south africa’, global health action 15(1), 2014045. https://doi.org/10.1080/16549716.2021.2014045 zembe-mkabile, w., surrender, r., sanders, d., jackson, d. & doherty, t., 2015, ‘the experience of cash transfers in alleviating childhood poverty in south africa: mothers’ experiences of the child support grant’, global public health 10(7), 834–851. https://doi.org/10.1080/17441692.2015.1007471 abstract introduction research design and methodology findings discussion conclusion recommendations acknowledgements references about the author(s) jerome p. fredericks department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa surona visagie centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lana van niekerk division occupational therapy, department of health and rehabilitation; faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation fredericks, j.p., visagie, s. & van niekerk, l., 2025, ‘experience-based suggestions for improving accessibility of minibus taxis for wheelchair users’, african journal of disability 14(0), a1699. https://doi.org/10.4102/ajod.v14i0.1699 original research experience-based suggestions for improving accessibility of minibus taxis for wheelchair users jerome p. fredericks, surona visagie, lana van niekerk received: 20 feb. 2025; accepted: 08 june 2025; published: 30 aug. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: accessible transport is a prerequisite for the sustainable developmental goals (sdgs). without transport, sdgs dependent on community mobility such as health and well-being, education, work and economic growth cannot be achieved. objectives: presenting experience-based suggestions offered by stakeholders to facilitate accessible minibus taxi services for wheelchair users in the peri-urban setting. method: the study setting was paarl-east, western cape province of south africa. a cooperative inquiry methodology was used. adult wheelchair users (n = 9) and their caregivers (n = 8), minibus taxi drivers (n = 7) and stakeholders (n = 4) involved in disability matters in the setting participated. data were collected in 16 group sessions. inductive thematic analysis was performed. results: five themes emerged. theme 1: the ideal communication platform; the need and purpose of databases of wheelchair users and minibus taxi drivers; the use of social media as a communication platform. theme 2: fair economical fares focus on service affordability and payment options. theme 3: facilitating ideal behaviour patterns discusses the development of mutual respect. theme 4: customised minibus taxis highlight the need for a fleet of minibus taxis with different specifications to address different wheelchair users’ needs. theme 5: minibus taxi service delivery considerations describes practical strategies such as home pickups and drop-offs. conclusion: current suggestions for solutions need further refinement. accountability and funding are underexplored. contribution: presenting experience-based suggestions by stakeholders on facilitating accessible minibus taxi services for wheelchair users. keywords: wheelchair users; minibus taxi drivers, minibus taxis; caregivers; access; accessibility; transport; co-operative inquiry; peri-urban; marginalised. introduction accessible transport is an important prerequisite for achieving the sustainable developmental goals (sdgs) and key in fulfilling sdg 11.2 ‘affordable, and sustainable transport systems’ for all. without transport, other sdgs that are dependent on community mobility, such as health and well-being, education, work and economic growth cannot be achieved. the importance of accessible transport was first emphasised by the united nations convention on the rights of persons with disabilities (uncrpd) in 2006 (nizar 2011). accessible transport for all is also crucial to the south african national developmental plan as it can help to support economic growth, reduce inequality and improve the quality of life of all south africans (mohamad taghvaee et al. 2023). access to transport is one of the dimensions of pillar 1 of the white paper on the rights of persons with disabilities (department of social development [dsd] 2016). despite awareness of the need for inclusion of persons with disabilities as well as policy and legislation advocating for inclusive transport going back 20 years the transportation needs of south african wheelchair users are still neglected (duri & luke 2022; fredericks, visagie & van niekerk 2024a; lister & dhunpath 2016). wheelchair users are often unable to access their communities or various services because of transport and mobility challenges (duri & luke 2022; lister & dhunpath 2016; visagie, visagie & fredericks 2023). in seeking solutions for these challenges, the voices of wheelchair users have often gone unheard because of marginalisation that result from being a minority group affected by dual vulnerabilities of disability and poverty (makomborero 2022). minibus taxis are the most readily used mode of public transport in south africa’s sprawling peri-urban settings (venter 2011). previous research has shown that wheelchair users face multiple barriers when accessing minibus taxis. barriers include getting to pick up points, getting into and out of the vehicle, affordability, safety and negative attitudes of drivers and co-commuters alike (cawood & visagie 2015; duri & luke 2022; fredericks et al. 2024a; gudwana 2019; kett, cole & turner 2020; lister & dhunpath 2016; vergunst et al. 2015; visagie et al. 2023). research on possible solutions is limited. kett et al. (2020) summarised various strategies that could or have been used in middleand low-income countries (lmics) to enhance the accessibility of transport for persons with disabilities. transportation applications support flexible schedules and door-to-door services, which are more expensive compared to regular mass rapid transport (mrt) services. in some south african cities, people with disabilities can use a smart card to access state provided public transport systems (lister & dhunpath 2016). however, difficulty in locating the machines and impatient drivers has hampered its use (lister & dhunpath 2016). both mrt and special transport system (sts) are in use in the city of cape town, a metropolitan area, less than 100 kms from the current study setting. however, dial-a-ride, which is a sts, that provides door-to-door transport service to persons with disabilities (paquette et al. 2007), experiences multifaceted challenges related to registration, unresponsive call centres, scheduling, high demand, a lack of punctuality and little flexibility (morta-andrews 2018). in addition, sts are more costly and segregate compared to those that include persons with disabilities (grisé et al. 2019). regarding mrt, the myciti bus service, which was introduced in 2010 in cape town, is the only public transport system in cape town that adheres to the requirements of universal design and accommodates the needs of wheelchair users. the current study setting of paarl is not included in the geographical areas where this service has been rolled out (city of cape town 2013), or will be in the foreseeable future. as such, minibus taxis remain the most feasible public transport option for persons with disability in the paarl region. research design and methodology study design two groups which are often antagonistic towards each other, namely, wheelchair users and minibus taxi drivers, came together in this cooperative inquiry to identity resolutions advantageous to both groups. co-operative inquiry was chosen because it draws on the experience and knowledge of co-researchers to make meaning and develop interventions. co-operative inquiry is cyclic in nature with four phases in each research cycle (heron 2014; wooltorton et al. 2020). figure 1 illustrates the phases for each of the four cycles of this study. figure 1: an illustration of the co-operative inquiry phases. co-operative inquiry cycles built on each other to refine and improve the trustworthiness of the established knowledge (heron 2014; wooltorton et al. 2020). authentic knowledge can only be developed if the co-operative inquiry co-researchers and research team members are jointly responsible for the process and outcomes achieved. the voices of all co-researchers must carry equal weight (heron 2014). achieving this level of engagement among co-researchers depends on practical arrangements that are clearly communicated and acceptable, co-researchers’ understanding the steps to be followed and purpose of a specific co-operative inquiry, dealing with hostilities, bonding and developing mutual trust to form a cohesive group (fredericks et al. 2024b). the actual topics reflected and acted on during this co-operative inquiry are presented in figure 2. figure 2: a summary of the processes in the 16 sessions. setting paarl-east in the western cape province of south africa is a peri-urban area. the majority of paarl-east’s residents experience severe poverty. low educational levels and economic struggles have plagued the community. crime, teenage pregnancy and not completing school are common. drug-related crimes that negatively impact human development, through its corrosive effects on family structures, health, community economy and safety, reduces the quality of life in the area (drakenstein municipality 2017). the main modes of community mobility in paarl-east are minibus taxis and/or walking. the town is surrounded by mountains and steep inclines are common. winters in paarl are cold and wet, summers hot and dry. gravel roads and potholes in tarred roads are common in the setting. three minibus taxi unions operate in the paarl area. together they have formed the paarl taxi forum. minibus taxi drivers from unions outside paarl also want to provide their services in the paarl area, which has led to conflict and violence. population, sampling and recruitment co-operative inquiry involves a significant time and personal commitment from co-researchers. thus, persons who were prepared to commit were sought. the co-researchers who participated in the study came from five different groups: wheelchair users using or wanting to use minibus taxi services. care givers of wheelchair users. minibus taxi drivers. stakeholders involved in disability matters in the setting. the first author and the research assistant. the 30 co-researchers were identified and recruited as follows: nine wheelchair users were recruited. three of them were known to the first author. four were identified through disabled people’s organisations, and two were sampled following a street-based approach. eight carers of these nine wheelchair users. seven taxi drivers were approached and recruited through the paarl taxi associated group. four additional stakeholders, consisted of a professional nurse who provided orthopedic services to the community, a disability activist, an interested community member and a community member with technical knowledge pertaining to wheelchairs. the principal investigator (first author of this article) and the research assistant. data collection data were collected between june and december 2021 through 16 co-operative inquiry sessions in four cycles. each session lasted between 60 and 120 min. the planning and reflection sessions were digitally audio-recorded and four co-researchers (s2, c4, td4 and c5; see table 2) kept handwritten notes. the practical sessions were recorded by a professional videographer. after each session, a summary was prepared by the first author and shared with co-researchers. the whatsapp platform was used for communication. with the permission of the group, all whatsapp messages were included as data. the reflective journal of the first author also served as a further source of data (fredericks et al. 2024a). data management and analysis data were transcribed and provisionally analysed as the research unfolded to inform subsequent phases and cycles. video recordings assisted to identify participants, added depth, for example, facial expressions, and body language, as well as provide visual descriptions of physical activities such as boarding a taxi. in developing the themes, braun and clarke’s (2012) six step inductive thematic analysis approach was used. manual line-by-line coding was done by the first author. codes were organised into meaningful groups that represented provisional themes. the second author was provided with this provisional analysis of the data. together the authors further developed the themes through an iterative reviewing and refining process (fredericks et al. 2024a). trustworthiness of the study repetitious cycles, of reflection and action following each other, refined understanding and results. saturation was achieved after the third cycle. a fourth cycle was completed to further the credibility of the findings. triangulation of methods and data sources further supported credibility, confirmability and dependability. moreover, iterative analysis and consensus by two authors (jf & sv) further support credibility. to support transferability, the study context and methods were clearly described (fredericks et al. 2024a; nowell 2017). the first author kept a reflective diary to record the research process and capture feelings, thoughts, concern and questions to bracket his opinions and allow the findings to reflect the opinions of co-researchers. ethical considerations the health research ethics committee of stellenbosch university (s21/01/009) provided ethical approval on 22 april 2021. written informed consent was provided by all co-researchers. a first aid officer was on standby during the action phases in case any injuries occurred. his services were not needed. cash payments and hot meals were used to compensate co-researchers. transport to attend the sessions was provided. the transcriber signed a declaration safeguarding personal details of participants. for ethical reasons, no video recordings were made of the planning and reflection sessions. the video recordings were viewed by the first author only and some of the video material was shared with the supervisors. data are stored in the password-protected stellenbosch university’s sunscholar research repository (where it will be kept for five years). findings demographic details of co-researchers seven of the nine wheelchair users were men and their age ranged from 32 to 67 years (table 1). all of them used orthopaedic style folding frame wheelchairs with no modifiable features. while five of them could propel the wheelchair by themselves, outdoors they all needed assistance to access minibus taxis. six of the caregivers were women. they were aged between 28 and 67 years. all the taxi drivers were men and their age ranged between 32 and 48 years (table 2) (fredericks et al. 2024a). table 1: demographic details of wheelchair users (co-researchers). table 2: demographic details of other co-researchers. emerging themes five themes, shown in table 3, emerged from the analysis. theme 1: ‘the ideal communication platform’ explains the need and purpose of a database of wheelchair users and minibus taxi drivers. it also explores how social media can be used as a communication platform between wheelchair users and minibus taxi drivers. theme 2: ‘fair economical fares’ focuses on the ideal price wheelchair users should be paying for using minibus taxi services. theme 3: ‘facilitating ideal behaviour patterns’ centres on what can be done to develop a more positive attitude among minibus taxi drivers, wheelchair users and fellow commuters. theme 4: ‘customised minibus taxis’ presents the need for a fleet of minibus taxis with different specifications that can address different needs of wheelchair users. theme 5: ‘minibus taxis service delivery considerations’ focuses on practical strategies to ponder when providing minibus taxi services to wheelchair users, such as home pickups and drop-offs. table 3: themes and categories that emerged from the data. theme 1: the ideal communication platform co-researchers revealed the need for a database and a communication platform. they envisaged that improved communication would assist taxi drivers to better serve the market offered by wheelchair users. the database was foreseen to serve two purposes. it could provide information on the location, level of assistance required and accommodation needs of wheelchair users who will be using minibus taxi services. it could also offer information on minibus taxi drivers who are willing to transport wheelchair users, including contact and vehicle accessibility related information: ‘… identify the wheelchair users who use or want to use of minibus taxi services, as well as the minibus taxi operators and drivers that are willing to provide minibus taxi services for wheelchair users so that there can be a database of wheelchair users and minibus taxi drivers of the area.’ (s4, male, 34, employed) ‘i agree with the database because it will provide us minibus taxi drivers information on where the wheelchair users are located, what their transfer needs are and what assistance can be expected from us. the database for minibus taxi drivers should include their minibus taxi company or minibus taxi owner, the driver’s name and surname, cell phone contact details, and if the driver received training to transport wheelchair users.’ (td2, male, 32, employed) with regards to databases, it was not clear who should be responsible for the developing and maintaining these databases. suggestions included a local organisation for persons with disability as well as health authorities at provincial and municipal levels. with regards to communication platforms, the co-researchers expressed the need for this communication platform on which to book trips and share pick up times. this could reduce long waiting times that were associated with exposure to harsh weather conditions, safety risks and the possibility of bladder and bowel accidents: ‘there is a need to develop a mobile application or forming a whatsapp group to allow wheelchair users and minibus taxi drivers to communicate with one and another.’ (wcu6, male, 32, spinal cord injury) a dedicated application might have been useful, but concerns were raised about the challenges that come with designing and downloading applications: ‘the mobile app will have to be developed, which comes with its own challenges … in some instances people struggle to download applications.’ (td5, male, 48, employed) the group decided that a social media application platform can serve as communication platform because people are usually familiar with it. it provides a user friendly and cheap way to communicate: ‘the whatsapp platform will work best. it is practical and user friendly. most people are already using it.’ (wcu3, male, 52, cerebral vascular accident) ‘i am also in agreement with the whatsapp application group but regards confidentiality, wheelchair users don’t need to communicate on the group but can also communicate directly with the minibus taxi driver. because if we all are one group it is going to take too much data, and i don’t want everyone to see my coming and goings.’ (wcu7, female, 54, amputation of the lower limb) theme 1 focused on the need for communication strategies between wheelchair users and minibus taxi drivers. the discussion ranged from the need for databases to a mobile communication platform. co-researchers felt databases might help wheelchair users to identify taxi drivers willing to support them and equip taxi drivers with knowledge about the specific needs of the wheelchair users they will provide transport to. theme 2: fair economical fares the group discussed the challenges of an affordable service for wheelchair users versus the taxi driver’s need to make a decent wage: ‘the reality of the taxi driver’s economic needs remain […] the minibus taxi drivers also have families they must take care of.’ (wcu7, female, 54, amputation of the lower limb) co-researchers debated options including free services, no concession to wheelchair users, allowing the taxi driver to determine the price and subsidised services. free of charge services: some co-researchers argued that wheelchair users who receive a social grant should not pay for minibus taxi services. they equated this with not paying for medical services received at government institutions: ‘i would say that pensioners and persons who receives [a social grant] or a disability grant should not pay for minibus taxi services. this is based on the principle of the department of health that provide free services for pensioners and disabled people who received disability grants.’ (s1, male, 66, retired) same charges: some group members, especially the taxi drivers, reasoned that if wheelchair users wanted equal rights they should be treated as equals and therefore pay the same rates as other passengers: ‘wheelchair users should pay the same amount what other people are paying. so, if the fare is r15 to town, wheelchair users should pay their fare of r15 with no exception. because if you buy ice-cream you will have to pay for ice cream whether you are in a wheelchair or not.’ (td3, male, 48, employed) subsidies or contracts: it was clear from the opinions of taxi drivers that they will only transport wheelchair users for free if they are compensated in another manner such as with subsidies or through a contract. a practical suggestion was to provide wheelchair users with tokens, thus allowing them to choose which taxi they want to use: ‘maybe provide each one of them with 6 complimentary tickets for the month and they can decide what they want to use it for.’ (td1, male, 44, employed) instituting contracts was another suggestion: ‘a minibus taxi organization should get a contract for five years to transport wheelchair users […] the reason for suggesting a five-year contract is to keep the specific minibus taxi organization accountable for the delivery of accessible minibus taxi services for wheelchair users.’ (s1, male, 66, retired) however, co-researchers were worried that violence might ensue should such contracts be offered: ‘we are going to have a problem with minibus taxis drivers when it comes to a contract because when it comes to money, “why did you get and why did i not get?” i can already see the minibus taxi war when it comes to who should get the contract.’ (td5, male, 48, employed) ‘the co-researchers suggested that a tender process might reduce the risk of violence. the one solution to decide on who should get the contract is that there should be a tender process and the one who gets it is his job.’ (td4, male, 45, employed) drivers decide if and what wheelchair users pay: the option of taxi drivers and taxi owners determining the amount wheelchair users should pay was discussed: ‘i think that owner of the minibus taxi should decide if a wheelchair user should pay or not pay.’ (c4, male, 28, unemployed) several ideas were shared regarding payment for minibus taxi services, including the option of free access to minibus taxi services. however, no definite conclusion was reached. two main considerations were balanced during the discussion; on the one hand co-researchers recognised that minibus taxi drivers should be compensated for their services, on the other hand they called for financial assistance to make minibus taxi’s affordable for wheelchair users, especially those receiving social grants. theme 3: facilitating ideal behaviour patterns co-researchers recognised how the attitude of one person can spill over and influence attitudes of those around them. they discussed ways to foster a collective effort including drivers, wheelchair users and fellow commuters to treat one another with respect, compassion and understanding in order to enhance the travel experience for everybody: ‘a little bit of positivity from minibus taxi drivers and passengers towards us as wheelchair users can go a long way. if minibus taxi drivers can provide the example of a more positive attitude to us this can lead that more passengers also becoming more positive towards us as wheelchair users.’ (wcu2, female, 49, cerebral vascular accident) ‘as minibus taxi drivers, we should know that we are here to provide a service for everyone and that we need to have a passion for our job and a positive attitude. there should be no discrimination towards anyone we are transporting.’ (td4, male, 45, employed) ‘it should go both ways when it comes to positive attitude because when wheelchair users are positive and not arrogant, minibus taxi drivers and passengers will also be more positive and less arrogant.’ (td2, male, 32, employed) co-researchers recognised that attitudes are dependent on knowledge and understanding. they felt that people who do not talk to each other cannot understand one another because the feelings and experiences of others are not known: ‘some passengers believe a myth that if they get too close to wheelchair users or touch them, they might also end up in a wheelchair. education is key.’ (wcu6, male, 32, spinal cord injury) ‘after i have been involved in this inquiry, i have a clear understanding about the dilemma of wheelchair users, and it will be a pleasure to transport them in the future. i will also encourage other passengers to accept wheelchair users as part of my clientele.’ (td6, male, 38, employed) theme 3 emphasises the importance of respect between wheelchair users, passengers and minibus taxi drivers. respectful interaction can be facilitated by the minibus taxi drivers who can set the tone on how wheelchair users should be treated in their vehicle. according to the co-researchers, minibus taxi drivers can play a role in the education of passengers and set the norm that all passengers, including wheelchair users, must be treated with respect and dignity. theme 4: customised minibus taxis with regards to fleet with different specs, co-researchers felt that the ideal scenario would be that some minibus taxis are adjusted to meet diverse user needs. the modification of minibus taxis are for example that some minibus taxis carry removable ramps, while others have a hydraulic lift and wheelchair docking station. co-researchers also made design suggestions particularly focused on strategies for boarding and how best to secure wheelchairs during transit: ‘minibus taxis should be horses for courses. we as wheelchair users have different diagnoses, so our needs for minibus taxi services will also differ. that is why it is important that there should be a fleet of minibus taxis which can accommodate wheelchair users with different transport needs. an example will be that a wheelchair user who is unable to do any transfers make use of an advanced minibus taxi that is equipped with a hydraulic lift system.’ (wcu9, male, 37, spinal cord injury) ‘i think the best thing for the future is that the minibus taxi has an automatic ramp where the wheelchair user can drive himself onto the minibus taxi and secure himself or herself. the wheelchair user will be independent and need not wait for the minibus taxi driver or guard for assistance.’ (td1, male, 44, employed) with regards the storage of wheelchairs inside the minibus taxis it requires securely and safe storage. however, it was considered a problem if the wheelchair took up space that could have been used by a commuter, in which case wheelchair users would be expected to pay an additional fee for the transport of the wheelchair. one suggestion was storing space can be behind the seat of the driver: ‘the wheelchair should be placed between the front and first set of rear seats.’ (td2, male, 32, employed) another suggestion was a clip or frame at the back of the taxi: ‘i was just wondering if the wheelchair can be stored outside of minibus taxi at the back. similar to what people are using for their bicycles; those bike frames.’ (s3, male, 43, employed) yet another suggestion involved removing some seats: ‘what about at the back of the minibus taxi if one removes the back seats of the minibus taxi it creates more space that can be used as storage for wheelchairs.’ (td5, male, 48, employed) theme 4 shows that co-researchers felt that a fleet of minibus taxis with different specifications would best address the diverse transfer needs of wheelchair users. however, the cost implications and strategies to determine which modifications should be made by whom were not discussed. theme 5: minibus taxi service delivery considerations to ensure smooth use of minibus taxi services for wheelchair users, it is important that practical strategies are considered by minibus taxi drivers and wheelchair users alike. these include safe transfers, personal hygiene, suitable clothing, inclusiveness and home pickups and drop-offs. handling of wheelchair users during transfers: co-researchers felt that the wheelchair user should direct the transfer. the importance of asking the wheelchair user how much and what type of support he or she needs during transfer was emphasised: ‘before your transfer, any wheelchair user into or out of a minibus taxi you need to ask them permission if they need assistance and the type of assistance needed.’ (td1, male, 44, employed) co-researchers also stressed that doing a transfer requires training: ‘training and equipping minibus taxi driver and their guards is key.’ (wcu4, male, 57, cerebral vascular accident) the co-researchers further suggested that educational tools showing transfer strategies could be made available: ‘i would also suggest that a pamphlet with photos and instructions should be developed which demonstrates step by step how transfers should take place when transferring wheelchair users into and out of minibus taxis.’ (s2, female, 62, retired) ‘i even have a better suggestion why don’t we make a video clip of how the transfers should take place and distribute it among the minibus taxi drivers as a reference they can use if they are unable to attend the training.’ (s3, male, 43, employed) wheelchair users who are women should feel comfortable when being assisted by men. thus, co-researchers advised that training should include explicit guidance pertaining transferring women: ‘minibus taxi drivers should know how to handle female wheelchair users; for instance, where they can be touched so that female wheelchair users don’t feel uncomfortable.’ (wcu7, female, 54, amputation of the lower limb) conversely, the point was raised that female wheelchair users’ choice of clothing influence the ease with which transfers can be made while maintaining their modesty; as such, they were advised to select their clothing with care: ‘it is important that wheelchair users and especially female wheelchair users wear appropriate clothing like a tracksuit for instance when they will be making use of minibus taxi services.’ (wcu2, female, 49, cerebral vascular accident) personal hygiene: depending on the diagnosis of wheelchair users, some might not have bladder and/or bowel control. having a bladder or bowel accident is embarrassing for the user and might elicit adverse reactions from fellow commuters and taxi drivers. co-researchers felt trips should be organised with consideration of bladder and bowel schedules. in addition, precautions such as diapers and waterproof seat covers, were also proposed: ‘if possible, we need to prevent wheelchair users from these embarrassments, maybe wheelchair users should make use of diapers, or the minibus taxi seats should be covered with waterproof seats.’ (td5, male, 48, employed) inclusion of all stakeholders in planning of taxi services of wheelchair users: group members stressed the importance of involving all relevant stakeholders, including wheelchair users and caregivers, in planning of strategies for accessible minibus taxi services for wheelchair users: ‘as a minibus taxi driver, i realised again today the importance of inclusiveness or to communicate in a group like in this inquiry. if you as wheelchair users did not share your needs or bad experiences, i would never know the fear and anxiety you go through when using our services. i am very happy that you shared your transport needs with us, and i understand better how i can help you with transport […] more minibus taxi drivers and other stakeholders should be involved in discussions like these. meeting wheelchair users and seeing their need will change their minds.’ (td1, male, 44, employed) home pickups and drop-offs: for wheelchair users, the ideal scenario would be for minibus taxi services to pick them up and drop them off at their homes: ‘i had the most wonderful positive experience when the driver of a minibus taxi picked me up at my home. he was able to transfer me safely from my wheelchair into the minibus taxi and asked me if i am okay after he placed me on the seat.’ (wcu5, male, 55, spinal cord injury) theme 5 emphasised the need for collaboration in planning and executing of services, with wheelchair users guiding these processes. discussion this section explores the complexities that surround many of the proposed solutions. it also comments on the feasibility of the solutions based on available research evidence and current realities. of note was that the co-researchers were mostly silent about who should take responsibility for the implementation of the suggestions they made. furthermore, and of greater importance, they did not provide guidance on where the financial resources inherent to the success of many of the suggested solutions could be sourced from. suman and patel (2022) explored the use of web directories, search tools of online websites that are smaller than search engines, for databases such as those suggested under theme 1 ‘the ideal communication platform’. web directories are created and maintained by human editors who include selected information and resources that adhere to a certain quality standard. they allow users to browse relevant information that is organised and structured alphabetically or subject-wise (suman & patel 2022). databases, in the form of web directories, curated to contain the necessary information on taxi drivers (routes, accessibility features, training of driver, etc.) and wheelchair users (transfer needs, transit support needed, etc.) can help wheelchair users to identify and contact a minibus taxi driver of their choice. they can also provide minibus taxi drivers with information on the location of the wheelchair user and any specific accommodations they might require throughout the travel chain. in order to develop such a directory, information must be gathered through a census. following the initial development of a directory that is fit for purpose, the information must be updated regularly to ensure that new users and providers are added, address changes are noted and information of those who have moved or passed away is removed (suman & patel 2022). initial development of the directory can be done in a way where specialist programming skills are not required for maintaining the directory; as such, wheelchair users could take responsibility for this aspect. advocacy is required to convince local government or a local disabled people organisation to take responsibility for development and maintenance of a fit-for-purpose directory. co-researchers saw great benefit in being able to communicate with taxi drivers directly to secure pickup times and points. they initially proposed an online group for this purpose but reached consensus that their preference would be private communication. if cell phone numbers of minibus taxi drivers are made available to wheelchair users, both parties could communicate privately without the potential annoyances of higher data costs, unnecessary information, inappropriate postings and loss of privacy. it should, however, be noticed that this preference was strongly informed by the cohesion between taxi drivers and wheelchair users that developed through the cooperative inquiry process. as such, the preference for personal communication cannot be assumed to be transferable to other settings. establishing a system of communication between taxi drivers and wheelchair users to secure pickup times and points will reduce the health and safety risk associated with long waiting times (gudwana 2019; pretorius & steadman 2018; van biljon & van niekerk 2021; vincent & chiwandire 2017). a similar service – uber assist – is already in existence. this service has three tiers with the lowest being uber assist, and then two more advanced levels. however, there are no uber services available in the study area and uber is more expensive than minibus taxis. theme 2, ‘fair economical fares’, underscored the finding from previous studies that for minibus taxi drivers time is money and that ferrying as many people as quickly as possible remain their main concern (cawood & visagie 2015; grut et al. 2012; lister & dhunpath 2016; mudzi, stewart & musenge 2013; venter et al. 2002; vergunst et al. 2015). this has led to wheelchair users being left on the kerb or being exploited by having to pay for two or even three seats as their wheelchair takes up space. furthermore, some of them must be accompanied by a caregiver (chakwizira 2010; gudwana 2019; vergunst et al. 2015). the key message going forward is that wheelchair users must not be exploited, while minibus taxi drivers should not have to offer charity. the price for minibus taxi services is dependent on the price of fuel. in south africa, fuel prices are calculated monthly. at the time of the co-operative inquiry, the average minibus taxi prices for a return trip for commuters living in the study setting were as follows: r50 (or 2.75 usd or 2.46 eur) to the day hospital. r28 (or 1.55 usd or 1.38 eur) to the central business district. r28 (or 1.55 usd or 1.38 eur) to paarl mall. r80 (or 4.47 usd or 3.94 eur) inclusive of the travel fee for home pickups and drop-offs irrespective of where you wanted to go. table 4 provides a summary of costs if a wheelchair user from the study setting were to visit each of the above-stated places once a month. it shows that, depending on whether they paid for their wheelchair or not, as well as home pickups and/or drop-offs or not, they will need to budget between 10% and 69% of their monthly state disability grant of r2080 or 116.09 usd or 102.49eur to cover these three trips. it’s important to note that the wheelchair users in this study could not travel without a carer as shown by the demographic information. the disability grant does not provide sufficient money to meet the needs of persons with disabilities. it is also often used to support others in the households as well. thus, priorities are juggled to best balance expenses (trafford 2023). table 4: a summary of cost of trips. the reality is that in most cases wheelchair users cannot afford minibus taxi services (which is a cheap form of public transport) for meeting even the most basic transport needs (venter 2011). many suggestions were made by the co-researchers about how services could be made more affordable; however, they did not reach consensus. lister and dunpath (2016) recommended that minibus taxis owners should, such as buses, be provided with contracts with a route number, fixed times and a fixed fare system. such contracts provide the opportunity to stipulate service-level agreements that include a commitment to transport wheelchair users, accessibility specifications for vehicles, relevant subsidy mechanisms and the relevant training required for safely assisting wheelchair users. further investigation is required regarding the criteria used to issue such a contract. the caution that implementing a system that utilises contracts or subsidies may lead to violence is well founded. the paarl area is known for violence over minibus taxi routes and on several occasions the government had to intervene to stop fighting and killings over route turfs (larner 2017; lee 2012). implementing subsidies is also a suggestion supported by lister and dhunpath (2016). it is favourable because it allows individual wheelchair users a choice of driver and taxi. the establishment of a system using subsidies or contracts requires a dedicated budget, fair allocation processes and administration. experience in other areas of south africa has shown that putting these factors into place is fraught with challenges (govender 2016). one of the biggest challenges will be allocating responsibility for the costs. co-researchers suggested that the department of transport, department of social services, department of health and local government should be responsible for the budget. persuading these authorities to cover the budget will be challenging. poor administration and logistical issues can also lead to service breakdown as shown by the challenges experienced by an sts operating close to paarl in the city of cape town (morta-andrews 2018). another suggestion with regard to cost implications was that taxis should have different features to accommodate different physical needs of wheelchair users. the suggestion is supported by recommendations from gudwana (2006), and similar strategies have been implemented in other countries (park & chowdhury 2018). however, there is little possibility of recovering the expense of vehicle modification and a scheme that covers such cost will be required. conversely, minor modifications can be considered as a first step. a relatively minor modification that was strongly supported by co-researchers was the placement of handles at appropriate places inside the minibus taxi. these handles could give wheelchair users a secure place to stabilise themselves and thus decrease feelings of dependency, insecurity and anxiety during transfers and in transit, while simultaneously improving safety and the transit experience for all commuters. two of the suggestions made by co-researchers regarding the transit of wheelchairs are worth noting namely, securing the wheelchair at the rear of the taxi (such as a bicycle) or placing it behind the front seat. neither of these solutions would require seating space; thereby removing the rationale for charging an additional fee for the wheelchair. any negotiations or decisions regarding funding models for affordable access to taxi services for persons with disability (including wheelchair users) should include stakeholders with relevant power to affect the decisions made. when dealing with the taxi industry, the taxi owners are the relevant stakeholders. a less tangible, but no less severe, obstacle was the hurtful attitude of drivers and fellow commuters towards disability. lister and dhunpath (2016) as well as gudwana (2020) shared the opinion of co-researchers that workshops or awareness raising sessions should be a regular occurrence to educate the public at large on disability. they identified schools as starting points for education focused on disability inclusion. gudwana (2020) recommended that educational programmes be extended to include roadshows and informal awareness campaign programmes at the minibus taxi ranks. conversely, mashiri et al. (2005) found that pamphlets and press releases to raise disability awareness led to little change in behaviour. this suggests that the ways in which awareness raising campaigns are carried out needs to be modified and revised methods must be assessed, towards making them more effective. media campaigns on television, radio and advertisements have been used in some societies to facilitate behaviour change among fellow commuters and service providers (murphy et al. 2006). technologies such as persuasive design and game development have also been used to facilitate behaviour change among drivers and fellow commuters who discriminate against persons with disabilities (consolvo; mcdonald & landay 2009). assisted transfers into and out of the minibus taxi requires physical touch, and for people to be in close proximity to one another. co-researchers highlighted issues to consider during such transfers. the suggestion made included that users should direct the transfer process and indicate how and where they can be touched. in the united kingdom, training on disability awareness is provided by the disabled persons transport advisory committee (2000). the community transport association uk (cta) has organised a driver training programme for minibus drivers to assess their ability to drive a minibus, as well as training them how to use equipment to transport wheelchair users during boarding with the use of boarding devices and wheelchair restraint systems (cta 2000). the training is based on the social model of disability and covers aspects such as etiquette and language. the trainer in these sessions called disability equality training is often a person with a disability. in the netherlands, 3.5 hours of disability awareness training was provided to the staff of public transport companies by a person with disability with traveling experience. in scandinavian countries such as finland and sweden, disability awareness training is compulsory for taxi drivers and a code of practice has been issued for taxi drivers in northern ireland (galvin 2017). with regard to disability awareness training, the emphasis needs to be on changing negative attitudes, communication and raising awareness of environmental and organisation barriers experienced by persons with disabilities (fisher & purcal 2017). the co-researchers and previous research suggested that it is important that minibus taxi drivers should be equipped with knowledge and skills on how to handle wheelchair users (duri & luke 2022). in fact, all members of the travel chain such as the public, transport operators, passengers and the conductors need to be trained (lister & dhunpath 2016). some efforts were made on a voluntary basis to train south african taxi drivers, but it is unclear how and where this training happened (venter et al. 2002). the topic remains a complex one. no easy solutions come to mind. complex societal challenges, with solutions that require structural changes in key areas of society, can benefit from a socio-technical transition approach (geels 2002; kemp avelino & bressers 2011). socio-technical transition theory (stta) provides a framework to facilitate major, often resisted shifts in an existing socio-technical system – ‘a cluster of aligned elements including technology, regulations, consumer practices, cultural meanings, markets, infrastructure, scientific knowledge, supply and maintenance networks’ (schwanen, banister & anable 2011:1003). the stta has been used in diverse sectors such as in agriculture, mobility (transport), energy and water (geels 2019; whitmarsh 2012). because of lock-in mechanisms such as behavioural patterns, sunk investments, infrastructure and dominant regulations in fields such as transport, socio-technical transitions do not occur easily (geels 2010). such lock-in mechanisms are seen in the challenges the south african minibus taxi industry experience in rendering equitable services to wheelchair users. further work must be done to achieve a socio-technical transition during which the accessibility of minibus taxis for wheelchair users is transformed strength and limitations co-operative group members were passionate about the topic and shared ownership of the process. data were collected just after the lockdown for the coronavirus pandemic was ended in south africa. this caused some wheelchairs users in the community to decide not to participate to protect their health. consequently, the age range of the co-researchers was decreased. however, a spectrum of experiences was explored because of varying diagnosis and physical abilities among those who did participate. conclusion if governments want to achieve the goal of accessible transport for all, including wheelchair users, they should move away from vehicle-centred transport towards people-orientated mobility planning. the stta provides a framework that can facilitate this shift to improve the accessibility of minibus taxis for wheelchair users and through that assist their occupational participation. the guidance of wheelchair users and other persons with disabilities should be sought throughout the transport chain. current suggestions for solutions need further refinement. accountability and funding sources remained particularly underexplored. recommendations based on the findings of the study, following recommendations are proposed: development of a web directory with relevant information as discussed should be further explored. funding and subsidy models should be studied to determine the most suitable option for this and similar settings. wheelchair users and disabled people’s organisations should inform the adaptations made to minibuses to improve access, such as where to place handheld supports. a proportion of designated taxis should have portable ramps and/or hydraulic lifts as well as a wheelchair docking station. wheelchairs should be stored behind the front seat or at the back of the taxi and users should not incur extra costs for the wheelchair. all members of the travel chain should be trained with knowledge and skills regarding providing services and support to wheelchair users. occupational therapists and health workers working at disabled people’s organisations could be involved in providing information, training, guidance, on optimal transfer strategies. a training manual could be developed based on the outcomes of this co-operative inquiry. this manual could be piloted in actual training minibus taxi drivers at no cost. they would receive a certificate or competence if certain minimum requirements are met. acknowledgements this article is partially based on, j.p.f., the first author’s dissertation of the degree of doctor of philosophy in occupational therapy at the faculty of medicine and health sciences, stellenbosch university, south africa, with supervisor dr surona visagie and co-supervisor prof lana van niekerk, received march 2025, available here: https://scholar.sun.ac.za/server/api/core/bitstreams/747b73fb-b7f6-4e3d-bd4b-428bbd84809a/content. i acknowledge all the co-researchers for providing their consent and willingness to participate in the inquiry, rev j. pansegrouw for the availability of the venue, ms m. johnson for her support, mandy fredericks for assisting with logistics, my supervisors surona visagie and lana van niekerk and research assistant hamilton pharaoh. competing interests the author reported that they received funding from national research funds, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions j.p.f. formulated the research aim and objectives with the primary study leader j.p.f contributed to the conception and design of the work, collected the data, was involved in transcription, translation and analysis of the data and contributed to the writing of the manuscript. s.v. and l.v.n. provided academic guidance, mentorship, supervisions and editing contributions throughout the research including the formulation of the objectives, design of the work and data analysis; and contributed to the writing and editing of the manuscript. funding information the authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article. this work was supported by the national research foundation thuthuka grant (ttk200302507569). data availability the datasets generated and analysed to support the findings of this study are available from the corresponding author, j.p.f., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the 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http://digitalcommons.ilr.cornell.edu/gladnetcollect/257. vergunst, r., swartz, l., mji, g., maclachlan, m. & mannan, h., 2015, ‘“you must carry your wheelchair” – barriers to accessing healthcare in a south african rural area’, global health action 8(1), 29003. https://doi.org/10.3402/gha.v8.29003 vincent, l. & chiwandire, d., 2017, ‘wheelchair users, access and exclusion in south african higher education’, african journal of disability 6(1), 1–9. https://doi.org/10.4102/ajod.v6i0.353 visagie, w.b., visagie, s.j. & fredericks, j.p., 2023, ‘community mobility: psychosocial experiences of stroke survivors who use wheelchairs in worcester, south africa’, south african journal of occupational therapy 53(1), 81–91. https://doi.org/10.17159/2310-3383/2023/vol53n1a9 whitmarsh, l., 2012, ‘how useful is the multi-level perspective for transport and sustainability research?’, journal of transport geography 24, 483–487. https://doi.org/10.1016/j.jtrangeo.2012.01.022 wooltorton, s., collard, l., horwitz, p., poelina, a. & palmer, d., 2020, ‘sharing placebased indigenous methodology and learnings’, environmental education inquiry 26(7), 917–934. https://doi.org/10.1080/13504622.2020.1773407 introduction an overview concluding remarks references about the author(s) michelle botha department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa callista k. kahonde department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation botha, m. & kahonde, c.k., 2024, ‘towards evidence-informed action in promoting disability inclusion in africa’, african journal of disability 13(0), a1590. https://doi.org/10.4102/ajod.v13i0.1590 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa’, under the expert guidance of guest editors dr michelle botha and dr callista kahonde. editorial towards evidence-informed action in promoting disability inclusion in africa michelle botha, callista k. kahonde copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction african network for evidence to action in disability (afrinead) is a pan-african network promoting the implementation of disability research evidence into policy and practice through, among other activities, a triennial conference. the 7th afrinead conference took place in cape town from 29 november 2023 to 03 december 2023. the conference theme was: ‘positioning afrinead: rolling out disability research in africa’, which is particularly pertinent as the network moves towards two decades in existence. the conference also marked the retirement of long-standing chairperson and champion of afrinead, and mentor to many researchers, prof. gubela mji. this special issue, therefore, offers an opportunity to look back on the research contribution of afrinead to disability work in africa (see kahonde & mji 2024), as well as to look forward to the role that the network can play in nurturing emerging disability studies scholarship across the continent (see botha & ohajunwa 2024). the many disability-related research interests and disciplinary approaches represented at this conference evidence the interdisciplinary and intersectoral significance of disability research, and disability studies itself, in africa. this special issue offers a taste of the disability scholarship that is currently ongoing within afrinead, as well as recommendations on promoting the inclusion and empowerment of people with disabilities as stakeholders across several key spheres, including education, employment, health and rehabilitation, and, crucially, research itself. the call for submissions to this special issue was circulated to all conference presenters. fourteen manuscripts were received, which underwent a double blind peer review, after which 12 manuscripts were accepted. we are pleased to present this special issue of the african journal of disability (ajod) as a record of the 7th afrinead conference. an overview kahonde and mji (2024) present the trends in research emanating from researchers who have contributed over the course of the first six conferences of afrinead. this article acts as a valuable stock-taking of the foci of disability research undertaken within afrinead. however, they notice the lack of south-tosouth collaborations, finding that partnerships between institutions within countries, as well as with the global north, are more prevalent. they assert the need to develop trans-national collaborations in africa. we then turn to two articles in the realm of inclusive education in both basic and further education. firstly, kawesa et al. (2024) describe their adapting and testing of tools to measure disability inclusion in primary school classrooms in uganda. they highlight the importance of modifying existing tools in line with the cultural and philosophical context of africa, problematising a tendency to uncritically import interventions from other contexts. secondly, muzite and gasa (2024) present their work on the lived experiences of people with disabilities attending technical and vocational education and training (tvet) colleges in south africa. they centralise the voices of students through story exercises, presenting an intersectional analysis of barriers related to disability, socio-economic status, race and gender. our attention then shifts to the realm of employment. uiras et al. (2024) present their research on the challenges faced by persons with visual impairment to accessing employment in namibia. qualitative data presented in this article demonstrate the impact of challenges to employment on self-acceptance and psychological well-being. collaborations among different stakeholders are identified as crucial in promoting reasonable accommodation and optimal integration of persons with visual impairment into the labour market. four articles then consider experiences of people with disabilities in accessing health, rehabilitation and support services. firstly, watermeyer (2024) adopts a critical rehabilitation studies approach to consider the ways in which rehabilitative interventions may require people with impairments to engage in self-disciplining behaviours. using case examples, he suggests that rehabilitation’s tendency to require individuals to strive for improvement may have implications for personal psycho-emotional well-being and collective empowerment. secondly, nono et al. (2024) present a scoping review on the barriers and facilitators to the use of clean intermittent catheterisation in children with spina bifida. they consider these in low-resourced contexts, offering insight into the contextual specifics, which impact this essential practice for health and well-being. thirdly, davids and van staden (2024) focus on the experiences of women who are deaf in accessing gender-based violence (gbv) support services. this qualitative study asserts the need for targeted interventions strengthened through healthcare worker training. lastly, mugisha et al. explore the correlation between disability severity and knowledge of hiv prevention in uganda, providing much-needed data on this under-explored area. a further focus at the conference, cutting across the thematic areas, was the need to develop and promote participatory research where people with disabilities are positioned as knowledge-bearers. three articles provide useful examples and reflections. firstly, wickenden (2024) describes the process of conducting participatory and inclusive research into educational experiences in kenya and nigeria. she reflects on two projects, which employed peer researchers and utilised participatory workshops with youth with disabilities and their parents. she makes a case for the possibility of research where people with disabilities are not merely participants but directly involved as researchers. secondly, sikapa et al. (2024) discuss on their production of accessible digital stories on inclusive practice as a means to disseminate research evidence that is understandable for communities. this formed part of a broader study exploring the digital divide in inclusive research. thirdly, bannink mbazzi et al. (2024) reflect on a process of co-creating a film on educational and employment experiences with youth with disabilities as part of a research dissemination strategy in uganda and ghana. they illustrate how this approach may be used to involve youth with disabilities in knowledge transfer processes. some key recommendations emerged from the conference on strengthening disability studies researchers in africa. the article by botha and ohajunwa (2024) reports on the pre-conference event ‘towards strengthening african disability researchers’. they highlight that researchers in disability studies are engaged in both a scholarly endeavour and a personal process of conscientisation, with which they need support. existing afrinead structures are identified as holding potential to support emerging researchers with mentorship, networking and funding. concluding remarks this issue, although drawing together work in a variety of spheres, speaks strongly to the need to develop philosophical approaches, practices, tools and research methods that are grounded in the specifics of african socio-cultural contexts, which remains a core mission of afrinead. the imperative to continue to foster south-to-south partnerships is clear. it is exciting to see how researchers in africa are endeavouring to decolonise research methods and approaches. this shift brings hope of contextually relevant evidence-informed action in promoting disability inclusion in africa. references bannink mbazzi, f., hameed, s., ganle, j.k., shakespeare, t. & polack, s., 2024, ‘participatory research with youth with disabilities: experiences from subsaharan africa’, african journal of disability 13(0), a1491. https://doi.org/10.4102/ajod.v13i0.1491 botha, m. & ohajunwa, c., 2024, ‘seeing the human behind the research: strengthening emerging african disability researchers’, african journal of disability 13, a1494. https://doi.org/10.4102/ajod.v13i0.1494 davids, r. & van staden, m., 2024, ‘hear our voices: the perceptions and experiences of women who are deaf on gender-based violence’, african journal of disability 13(0), a1490. https://doi.org/10.4102/ajod.v13i0.1490 kahonde, c.k. & mji, g., 2024, ‘disability research in african network for evidence-to-action in disability affiliated countries: an upward trend’, african journal of disability 13(0), a1517. https://doi.org/10.4102/ajod.v13i0.1517 kawesa, e.s., nimusiima, c., seeley, j. & mbazzi, f.b., 2024, ‘selection of a classroom observation tool for disability inclusion in uganda’, african journal of disability 13(0), a1485. https://doi.org/10.4102/ajod.v13i0.1485 muzite, p. & gasa, v., 2024, ‘experiences of students with disabilities in technical vocational education and training colleges’, african journal of disability 13(0), a1477. https://doi.org/10.4102/ajod.v13i0.1477 mugisha, j.o., makanga, r., kimono, b. & kasamba, i., 2024, ‘leaving no one behind: disability and hiv prevention knowledge among adults in a population cohort in uganda’, african journal of disability 13(0), a1497. https://doi.org/10.4102/ajod.v13i0.1497 nono, d., sssemata, a.s., bannink mbazzi, f. & seeley, j., 2024, ‘practice of clean intermittent catheterisation in children with spina bifida: a scoping review’, african journal of disability 13(0), a1473. https://doi.org/10.4102/ajod.v13i0.1473 sikapa, l.l., dialo, h., ndi, v.n., neindefoh, l.s., nkemchap, c.d. & cockburn, l., 2024, ‘digital storytelling to promote disability-inclusive research in africa’, african journal of disability 13, a1495. https://doi.org/10.4102/ajod.v13i0.1495 uiras, k., paulse, n.a., murangi, a. & hlatywayo, c.k., 2024, ‘employment challenges for persons with visual impairment in windhoek, namibia’, african journal of disability 13(0), a1500. https://doi.org/10.4102/ajod.v13i0.1500 watermeyer, b.p., 2024, ‘rehabilitaton, the disciplining of the body and disability identty: refectons from psychotherapy of people with disability’, african journal of disability 13(0), a1505. https://doi.org/10.4102/ajod.v13i0.1505 wickenden, m., 2024, ‘using participatory and inclusive methodologies to explore inclusive education in africa’, african journal of disability 13(0), a1486. https://doi.org/10.4102/ajod.v13i0.1486 abstract introduction methodology findings ethical consideration discussion conclusion acknowledgements references footnotes about the author(s) oliver mutanga institute of health and society, faculty of medicine, university of oslo, norway melanie walker centre for research on higher education and development, university of the free state, south africa citation mutanga, o. & walker, m., 2017, ‘exploration of the academic lives of students with disabilities at south african universities: lecturers’ perspectives’, african journal of disability 6(0), a316. https://doi.org/10.4102/ajod.v6i0.316 original research exploration of the academic lives of students with disabilities at south african universities: lecturers’ perspectives oliver mutanga, melanie walker received: 16 sept. 2016; accepted: 19 dec. 2016; published: 30 mar. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: a decade has passed since south africa signed and ratified the convention on the rights of persons with disabilities, a human rights treaty that protects the rights and dignity of people with disabilities. however, not much have changed for students with disabilities. objectives: the aim of this study was to explore lecturers’ experiences with, and perspectives on, disability as well as with students with disabilities. it was hoped that this would contribute to the ongoing policy debates about diversity, inclusion and support for students with disabilities at universities. methods: in an effort to understand the lives of students with disabilities better, a study which included students with disabilities, lecturers and disability supporting staff was conducted at two south african universities – university of the free state and university of venda. the paper takes a snapshot view of four lecturers and their perceptions of the lives of students with disabilities at their respective universities. results and conclusion: although most disability literature report students with disabilities blaming lecturers for their failure to advance their needs, this paper highlights that the education system needs to be supportive to lecturers for the inclusive agenda to be realised. an argument is made for a more comprehensive approach towards a national disability policy in higher education involving many stakeholders. without a broader understanding of disability, it will be difficult to engage with the complex ways in which inequalities emerge and are sustained. introduction the aim of this paper is to understand lecturers’ thoughts and views on how the needs of students with disabilities1 are acted upon at these selected universities. insights from these lecturers provide data that are helpful in comprehending the experiences of students with disabilities in south african universities. this contributes to our understanding of lecturers’ roles in the lives of students with disabilities, the barriers they face and also the support they might need to enable them to deal with diversity in higher education. as of 2016, there has been no legislation that specifically looks at disability issues in south african higher education. with specific reference to disability, and to facilitate the inclusion and participation of people with disabilities in all spheres of the economy, the national commission on special education needs and training and the national committee on education support services were appointed in 1996. their findings (doe 1997), produced in 1997, stated that: the primary challenge to higher education institutions at present is to actively seek to admit learners with disabilities who have historically been marginalised at this level, providing them with opportunities to receive the education and training required to enter a variety of job markets. alongside this is the challenge to develop the institution’s capacity to address diverse needs and address barriers to learning and development. this includes not only learners with disabilities, but all learners. this requires that adequate enabling mechanisms be put in place to ensure that appropriate curriculum and institutional transformation occurs, and that additional support is provided where needed. (p. 126) this report pointed out that there was a need to admit more students with disabilities and to facilitate their full participation (matshedisho 2007). the integrated national disability strategy (inds) was introduced in 1997 with the intention to both guide and support increased employment of, and to some degree to serve, people with disabilities within government structures. former president, thabo mbeki (office of the deputy president [odp] 1997), acknowledged this: this white paper [inds] represents the government’s thinking about what it can contribute to the development of disabled people and to the promotion and protection of their rights. we believe in a partnership with disabled people. therefore, the furtherance of our joint objectives can only be met by the involvement of disabled people themselves. (p. 2) the government thus recognised both the need for the rights of disabled people to be protected as well as their involvement and participation in matters affecting their lives (howell 2005). in 2001, the government released the national plan for higher education (nphe). the nphe outlines the framework and mechanisms through which the policy goals and transformation imperatives of the white paper 3 and higher education act could be implemented (ministry of education [moe] 2001). among other things, the nphe established indicative targets for the size and shape of the higher education system. although there is no reference to students with disabilities, of particular relevance in the context of this study is the strong focus on equity issues through the identification of non-traditional students as a target group for inclusion in higher education.2 it also recommended that participation rates in higher education should increase from 15% to 20% by 2016 (moe 2001). in the same manner as the inds, the moe lamented a lack of data on the status of students with disabilities in south african higher education (moe 2001). again, in the same year, the education white paper 6 primarily covering the education of students with disabilities at the primary and secondary school level was released, stating that students with disabilities should have fair and equal opportunities to access and succeed in higher education.3 the paper provided guidelines to remove obstacles and challenges that hinder students with disabilities’ access and participation. it was also suggested that higher education institutions’ response to the needs of students with disabilities was important and regional collaboration among them was important in this regard. however, although it purports to cover inclusive education and participation of students with disabilities in higher education, some of its provisions seem to suggest otherwise. for instance, section 2.2.5.3 (doe 2001) states that: it will not be possible to provide relatively expensive equipment and other resources, particularly for blind and deaf students, at all higher education institutions. such facilities will therefore have to be organised on a regional basis. (p. 31) there are no details on how this can be implemented in practice. moreover, there are no legal sanctions for failure to comply with this duty. by insisting that it ‘will not be possible’ to provide equipment and resources to a section of the population, justifying this in economic terms, the paper arguably risks perpetuating inequalities. instead of the assurance of service provision, this paper places the burden on disabled students to justify their right to be included in higher education in such a way that does not place economic burdens on higher education institutions. in 2013, the white paper for post-school education and training was released. it states that higher education institutions need to accommodate students with diverse needs and remove barriers that hinder the development of all students. this is a positive move towards inclusive practices in higher education. the paper states that the government remains committed to improving access and success for ‘non-traditional students’ (disabled, black and female students). therefore, it prioritises increasing student participation rates and improving their performance, success and throughput rates. the paper (department of higher education and training [dhet] 2013) further says that it will develop a strategic policy framework to drive this initiative: the dhet will develop a strategic policy framework to guide the improvement of access to and success in post-school education and training for people with disabilities. the framework will require all post-school institutions to address policy within institutional contexts and to develop targeted institutional plans to address disability. (p. xv) this policy framework is problematic in that it fails to recognise heterogeneity within the persons with disabilities and lumps all ‘people with disabilities’ into one group. a one-size-fits-all approach has the danger of failing to meet the needs of individuals with certain impairments. in december 2014, a ministerial committee was set up by the minister of higher education and training to develop the strategic policy framework as articulated in the 2013 white paper. the committee is still working on that framework. even though certain elements require ongoing critical debate, inclusive initiatives in south african higher education as explicated in various policy documents are currently being pushed and action is evident. notwithstanding these significant policy initiatives, a number of challenges continue to confront higher education, including universities. for example, the responsibility of ensuring disability rights in higher education is relegated only to one department – dhet. furthermore, some goals and values are in tension with one another; for example, pursuing social equity and redress alongside the production of high-quality graduates in the context of inadequate public funding and initiatives to support underprepared students (who include students with disabilities). while the policies are impressive on paper, the real question is why there are still challenges within the south african higher education system. commenting on the issues of inclusion, carrim (2002) argues that: although it would be fair to state that south african education and training legislation and policies promote an expanded and rich use of the notion of inclusion, it cannot be assumed that this is reflective of current, and emerging, practices. instead, mounting evidence seems to suggest that various forms of exclusion still prevail throughout the system currently. (p. 14) this calls for more careful consideration of the equity issues and the barriers within universities which restricts full inclusion and participation of students with disabilities. the current policy momentum clears the way for a platform to contribute the findings from this study. students with disabilities’ perceptions of their lecturers few studies have investigated the experiences and perspectives of lecturers regarding the experiences of students with disabilities at south african universities. among these studies, a degree of scepticism about disability among able-bodied lecturers was identified, including concerns about the fairness of allowing students with disabilities greater access to materials and additional contact with staff and questions about whether some students with disabilities should be given university places at all (mayat & amosun 2011; riddell et al. 2007). most south african disability studies (engelbrecht & de beer 2014; ntombela & soobrayen 2013; ohajunwa et al. 2014; swart & greyling 2011; tugli et al. 2013) have explored the lives of students with disabilities by examining, and often exclusively, only their views and/or support staff. however, this approach leaves out other parties such as lecturers, family members, administrators and management involved in the lives of students with disabilities, whose experiences and perceptions are important for the improvement of disability policy and practice. some studies report that lecturers lack disability awareness. in one such study, crous (2004) found that 67% of students with disabilities believed that their lecturers had limited knowledge of disability. where lecturers thus seemed unhelpful, for example, in terms of time allocated to complete assignments, students often related it to their lack of awareness regarding disability, rather than their unwillingness to help them. the lack of awareness on the part of lecturers was also highlighted by mayat and amosun (2011) in their study, which explored the perceptions of academic staff of admission of students with disabilities, and their accommodation once accepted into a civil engineering programme at a south african university. mayat and amosun (2011) observed that students with disabilities in south africa are still excluded from certain academic fields like engineering and natural sciences. even though the five participating staff members expressed willingness to teach students with disabilities, they showed some reservations. the authors argue that staff members were concerned about the perceived limitations of students with disabilities. they expressed concern that students with disabilities would not be able to meet all the course requirements. one lecturer even wondered whether students with disabilities would not be an ‘embarrassment’ to their able-bodied peers (mayat & amosun 2011:55). although these unjustified perceptions will likely vary depending on the type and severity of impairment, the issues raised from these two studies makes a case for continued probing from the lecturers’ side on how they perceive disability matters at universities and work on possible avenues towards full academic inclusion and participation of students with disabilities. understanding lecturers’ views regarding disability at universities is important as the behaviour of some lecturers exclude students with disabilities. this was highlighted in a study by van jaarsveldt and ndeya-ndereya (2015) on the e-learning needs of students with disabilities at a south african university. lecturers’ responses in this study indicated that while some lecturers used their personal agency to respond to the needs of students with disabilities, some lecturers distanced themselves from the responsibility of providing support to students with disabilities. those who distanced themselves displayed a lack of involvement with the students and tended to refer them to the disability unit (du) at the institution. van jaarsveldt and ndeya-ndereya (2015) then argue that although higher education institutions’ disability policies are necessary, personal responsibility from lecturers is also essential in bringing about inclusive campuses. some students perceive that lecturers’ lack of disability awareness results in them failing to make necessary provisions (matshedisho 2010). swart and greyling (2011) found that students in the humanities and social sciences were more positive about the support they receive from lecturers than other students in the natural, economic and business sciences. focusing on one higher education institution, ohajunwa et al. (2014) investigated whether, and how, disability issues are included in the teaching and research of three faculties: health sciences, humanities, and engineering and the built environment at the university of cape town. similar to swart and greyling (2011), this study reveals low levels of disability inclusion and disability not being viewed as an issue of social justice. however, there were pockets of inclusion, the nature of which differed from faculty to faculty, for example, out of 35 participants across the three faculties, 31 indicated that they include disability issues in their teaching (ohajunwa et al. 2014:108). they went on to report that in the faculty of engineering and the built environment, disability was included as an issue of legislation, space and environment. at the faculty of humanities the focus was on the socio-cultural and economic impact of disability. the faculty of health sciences introduced disability with an emphasis on individual impairment, environmental effects, community-based rehabilitation and inclusive development, as well as the prevention and management of disability. the authors rightly proposed the creation of an institutional system that will build the capacity of lecturers to include disability in teaching and research across faculties, in line with the university’s transformation agenda. the fragmentation of how universities through their departments respond to disability, as shown in this study, calls for an urgent need to understand how different universities are addressing the needs of students with disabilities. these studies clearly show how lecturers from different departments and universities understand and view academic lives of students with disabilities. lecturers are often the first point of contact for students, especially in the first year of study (bierwert 2002). research cited above indicated that the learning attitudes and approaches of lecturers are likely to have an impact on students’ learning (cameron & nunkoosing 2012). these assertions made the exploration of lecturers’ experiences and perspectives justified at the universities in this study, as no such study as this has been undertaken before in south africa. we considered that the lecturers would provide insight given studies already done at other universities. this would further inform the debate about the inclusion of students with disabilities in higher education. methodology purposive sampling was employed to recruit participants into a qualitative study. participants included 14 students with various types of impairments (hearing, physical, visual and mobility), 4 able-bodied lecturers and 3 disabled du staff. this paper only reports the data from lecturers. they were recruited through their respective heads of departments. a hard copy information sheet was provided to every lecturer. this was accompanied by a conversation clarifying the objectives of the study before they signed the consent form. data were collected through in-depth interviews. findings from this paper are based on the narratives of four lecturers, two from university of the free state (ufs) and two from university of venda (univen), about their experiences with students with disabilities in higher education, how their socio-cultural backgrounds influence their perceptions regarding disability and their role in their university lives. their names have been anonymised. each interview lasted between 40 and 60 minutes and data were digitally recorded and transcribed. the transcribed interviews were then analysed with the help of nvivo software by coding themes to generate tentative descriptive labels. although this sample is not large enough to make generalisations, future studies that utilise mixed research methods might generate generalisable data. bassey (1981) makes a valuable point by stating that the relatability of a case study is as equally important as generalisability. in his opinion, an important criterion for judging the merit of a study is the extent to which data are sufficient and appropriate for someone working in a similar situation or condition to make policy decisions based on what is described in the study. it is our hope that this paper, with data from a sample of four lecturers, is valuable for inclusive policy and from which further studies can be developed. to set the scene and give this discussion a context, we provide the lecturer profiles in table 1. table 1: profile of lecturers. findings findings are organised into four themes: lectures’ attitudes towards students with disabilities; disability awareness training; institutional disability arrangements and the preparedness of students with disabilities for higher education. attitude of lecturers towards students with disabilities both negative and positive attitudes towards students with disabilities were found. below are some of the elements of negativity: ‘the only time that the faculty can know that a student has a disability is when we are informed about that. we cannot do anything if we don’t know that a certain student has a disability. i have been the teaching and learning manager within the faculty since last year but i have not seen any student coming to me saying that he/she has a disability and that he or she needs assistance…i think that disability issues should be dealt at the institutional level and not individually by each faculty or lecturer because it’s an issue that needs to be addressed at institutional level. something like that should come from the institutional policies.’ (dr h, male, lecturer) ‘how do i know that a student has a learning disability? if i just think of spellings, conceptualising and formulations, it’s a massive problem for most of our students.’ (prof. j, male, lecturer) these two lecturers are raising pertinent challenging issues faced by lecturers. however, underlying the above statements are features of shifting the blame from individual teaching staff to either the students with disabilities and/or their respective institutions. these lecturers’ views suggest a lack of understanding of diversity which leads to exclusion of students with disabilities in teaching and learning activities, and consequently to their failure at universities. while one can argue that the lecturers are referring to students with severe learning disabilities, this cannot be a justification for failing to attend to their needs. the fact that they would have succeeded in the pre-university education is a testimony that they have the potential of succeeding at the university. challenges faced by students with disabilities are individualised in the absence of an integrated approach which takes into account individual factors as well as other external factors. this, unfortunately, leads to lecturers failing to make necessary provisions for students with disabilities. dr h points to the fact that if the affected students do not disclose their disabilities, they cannot be offered help by the teaching and learning staff. prof j thinks that learning disability is difficult to detect as some of the symptoms are related to challenges that are also faced by non-disabled students. it might be true that in an environment like the south african education system which still grapples with the effects of the apartheid system, distinguishing students facing learning challenges as a result of disabilities from those having challenges as a result of an unfair pre-university background is difficult. however, it cannot be a justification not to respond to the needs of students with disabilities. it is also important for lecturers to make some effort to understand why students with disabilities do not disclose their status and to come with measures that distinguish challenges faced by students with learning disabilities and those faced by non-disabled students in class. some university teaching and learning practices that are not related to disability but which affect how they transmit knowledge to all the students, including students with disabilities, were also mentioned at both universities. large classes and limited resources were highlighted: ‘some lecturers do not want to spend much time on one or two students because of pressure and demands coming from huge classes. in some classes there are over 500 students. it becomes tough for one lecturer to provide individual attention.’ (prof. j, male, lecturer) ‘we only have two laboratory technicians who are supposed to help between 20 and 50 students daily. how can we work well under these conditions?’ (mr l, male, lecturer) this evidence from these lecturers shows areas of commonality regarding the challenges faced by students with disabilities and those faced by non-disabled students. these findings are important in challenging the idea of treating students with disabilities as a homogenous category as this overlooks the varied experiences among students. on a positive note, not everything about lecturers’ responses to the needs of students with disabilities is negative. some positive attitudes towards students with disabilities were reported and these resulted in positive outcomes for students with disabilities: ‘some of our practical exercises in class cannot be taken by other students e.g. partially sighted students because some of the instruments we use. an endoscope e.g. has too much light inside which is not good for the eyes. we also use laser which again is not good for the eyes and the vernier callipers which are very sharp. in instances like these we make alternative practical exercises for the partially sighted students. the reason for these adjustments is that we want fair assessment for everyone.’ (mr l, male, lecturer) ‘assessments should be varied according to the barriers a student is experiencing. we try to be sensitive by having alternative assessments.’ (prof. j, male, lecturer) it is refreshing to note that lecturers appreciate alternative teaching, learning and assessment methods that cater for the needs of the students. however, these are ad hoc individual initiatives which leave students with disabilities at the mercy of their individual lecturers. it is, therefore, important for institutions to be clear in their policy documents on how all lecturers are supposed to provide alternative teaching, learning and assessments for students with disabilities. disability awareness training the lecturers report a lack of professional training in dealing with diversity matters, and particularly disability issues. this contributes to the lack of awareness, and ultimately to their ignorance and negative attitude towards disability issues: ‘the issue is that as lecturers, we are not trained to handle [disability] matters e.g. we have to deal with the slowness [of some disabled students] while at the same time you have big classes and you are rushing to meet department and faculty deadlines.’ (prof j, male, lecturer) ‘i am a physics lecturer and all i want is my students to get the fundamentals of physics. i don’t think i am equipped to deal with disability matters.’ (mr l, male, lecturer) another striking finding from this study is the acknowledgement by the lecturers of their lack of awareness on how to react and act when confronted by students with disabilities or disability issues in their practice: ‘how do i know that a student has a learning disability? if i just think of spellings, conceptualising and formulations, it’s a massive problem for most of our students.’ (prof. j, male, lecturer) however, while there is an acknowledgement of not knowing how to respond to disability challenges by these lecturers, some of their statements point to the existence of subtle negative attitudes: ‘it’s a punishment. i have to change the font size in a lecture with visually challenged students, a lecture which is supposed to be one hour takes me two hours for those guys.’ (mr l, male, lecturer) mr l views his responsibilities as burdening. he seems not to view it as part of his job to make sure that all his students access teaching and learning in an equitable manner. while mr l might be trying to portray the challenges of heavy teaching load placed on the lecturers and lack of appreciation regarding the academic needs of students with disabilities, disability awareness workshops emphasising the need to attend to academic needs of students with disabilities might be helpful for the lecturers. institutional arrangements also negatively affect lecturers in attending to the needs of students with disabilities: ‘some buildings were built years ago without disabled students in mind. what can i do when i have classes in those buildings? students in wheelchairs are entirely excluded.’ (prof. m, male, lecturer) in case of physical buildings and other institutional arrangements, lecturers might have less influence to bring about positive change. however, together with other stakeholders like students with disabilities, university management and government and private sector players, alternative arrangements and solutions might be found. this points to the fact that although lecturers in their individual capacities can act to bring inclusion and access for students with disabilities at universities, full inclusion for the success of students with disabilities is possible when all the stakeholders are included and are working together. institutional disability arrangements at the time of our research, there was no formal disability policy at ufs, while at univen a one-page policy document was provided. this leads to different, inadequate and fragmented ways of responding to the needs of students with disabilities at these universities. lecturers highlight that the administration and the students have an important part to play in creating a good environment for students with disabilities in the university: ‘on the application forms students are asked to declare disability status. the administration captures the data but as the lecturers we never receive this information from them afterwards. the administration must tell us in advance about the specific students who need special attention.’ (mr l, male, lecturer) this is indicative of the fact that lecturers need information and support to build inclusive campuses. in order for lecturers to create inclusive environments, it is necessary for them to be aware of disability matters. the current situation might result in students with disabilities performing poorly in academics as a result of the lack of support from lecturers. although some lecturers are generally supportive of students with disabilities, they sometimes feel overwhelmed by requests for individualised support and are unsure how to balance maintaining academic standards and accommodating the needs of students with disabilities. however, this need not be an either–or situation as the needs of students with disabilities can be provided while academic standards are being kept. this finding is the same as reported by riddell, tinklin and wilson (2005) who suggest that not having enough time to pay attention to each student is one of the reasons lecturers are reluctant to change or adapt their teaching methods. this links to an increasing issue of pressure of increased workload raised by academics in south african higher education system. students with disabilities’ preparedness and their attitudes at universities it emerged from the interviews with lecturers that some students with disabilities display negative attitudes and a lack of preparedness for higher education. consequently, this affects their full inclusion in higher education. for example, some students with disabilities are exposed to new technology or ways of doing things, which are meant to help them, only after they have been admitted into university: ‘some students come here not knowing e.g. how to use braille materials. it’s a mountain to climb.’ (prof. m, male, lecturer) prof. m’s statement indicates the challenges faced by students with disabilities at universities in order for them to access teaching and learning. the same challenge of students with disabilities being exposed to different arrangements for the first time in the university was highlighted by prof. j also who complained that as university lecturers, ‘we cannot make them [students with disabilities] recover all that has been lost at school…’. there are interventions that have been put in place at the two case study universities to help students with disabilities. however, these interventions are discipline-focused, for example, having alternative practical exercises and assessment criteria in science and information technology subjects. existing interventions do not cover all aspects of students with disabilities’ lives and other departments do not have any interventions. besides a lack of preparedness, it is reported that some students with disabilities lack agency to take initiative that might help them to flourish in higher education: ‘if a student with disabilities experiences a barrier but communicates well with a lecturer things are likely to run smoothly but the student must come to the fore. it is very tough if there are invisible disabilities that are not reported and it’s not known by the lecturers.’ (prof. j, male, lecturer) ‘some students with disabilities have negative attitude towards learning. i expect my students to be at a certain level of competence in my course at a certain time regardless of one’s status but if someone wants to be treated in a special way in school work because of a disability, it becomes a challenge and definitely people like that fail.’ (mr l, male, lecturer) prof. j and mr l highlight important aspects which need to be examined. firstly, though they want students with disabilities to flourish, they seem not to be encouraging them by inviting them to discuss their needs. these lecturers seem to distance themselves from the responsibility of providing support to students with disabilities. secondly, their expressions convey an ‘us versus them’ discourse (van jaarsveldt & ndeya-ndereya 2015:207). this leads to poor academic performance among students with disabilities. as pointed out by morris (2001), social inclusion cannot be accomplished as long as conditions which maintain exclusion stay untouched. as such, we need to pay attention to the everyday language and how people with disabilities are represented. besides a lack of training on diversity matters, individual agency on the part of the lecturers to enhance their own understanding of disability is also vital. these will help foster disclosure of disability status among students with disabilities who fail to disclose because of stigma (de cesarei 2015). responsibility lies with the entire university population. moreover, concerned lecturers who are aware of, and take an interest in, students with disability issues make an effort to learn about disabilities. greyling’s (2008) claim is valuable. she says that although dus or divisions for student support services are crucial in providing individual support and addressing institutional barriers, they should not be seen as the exclusive providers of support to students with disabilities. not only are the universities supposed to remain responsible for the transformation of different departments, but all relevant players are responsible for creating an inclusive environment. ethical consideration ethical clearance was given at the two institutions. at the university of the free state, the reference number is ufs-hum-2014-46. discussion lecturers’ narratives highlight that in most cases, they are aware of the need for creating an inclusive atmosphere for all students. however, they face challenges in their quest to promote and create barrier-free environments for students with disabilities. some of these challenges are influenced by institutional policies and practices. this might be stemming from a concern or a belief that accommodating the needs of students with disabilities might lower academic integrity or is unfair to students who are not disabled (fuller, bradley & healey 2004). while previous studies (fuller et al. 2004; matshedisho 2010; moriña, cortés & melero 2014) portray students with disabilities as victims and lecturers as perpetrators of social injustices, these four lecturers highlight that teaching staff are also victims of a system that fails to equip them to deal with diversity challenges in higher education. they also point to the fact that in some instances, students with disabilities create barriers to learning by their attitudes towards learning. thus, disability policies need to be multi-focused – targeting students with disabilities as well as encouraging them to be an active agency in their own lives. with regard to teaching staff’s awareness of disability issues and their attitudes towards students with disabilities, data show that positive attitudes towards disability depend on the initiatives by the individual lecturers. this is not surprising considering how lecturers are appointed and promoted in these universities. in most cases, a lecturer is appointed into his or her field of expertise based on the academic record for the related courses and the ability to conduct research in his or her field. except for some programmes (e.g. education where subjects like classroom management, pedagogies and curriculum studies are taught), in other disciplines, this is left to the lecturer concerned to handle. this is contrary to the ufs’ mission of ‘advancing social justice by creating multiple opportunities for disadvantaged students to access the university’ (ufs 2016), or univen’s mission statement, ‘responsive to the development needs of the southern african region, using appropriate learning methodologies and research’ (univen 2016). in practice, the advancement of social justice and appropriate learning methods for all students are missing at these two universities. increased expectations on lecturers such as teaching large classes with around 700 students (ibid.) make it difficult to dedicate time to the needs of all students. lecturers highlighted another dilemma which confronts university teaching staff, that is, the need to balance classroom management and the need to reach the required departmental mandates, for example, taught modules delivered in a given timeframe. in some cases, this challenge is acknowledged and corrective measures are put in place. university staff are, among other performance measures, evaluated by the amount of hours spent delivering lectures to students. as such, the need to attend to pedagogical issues (e.g. paying individual attention to the needs of students with disabilities) is relegated as a secondary issue. the lack of a sound relationship between lecturers and students with disabilities has a negative effect on the inclusion and participation of students with disabilities. ginsberg and wlodkowski (2009) express this: …teaching methods and educational environments that motivationally favour particular learners to the exclusion of others are unfair and diminish the chances of success for those learners discounted or denied in this situation. (p. 32) it is, therefore, important to pay attention to these issues in an attempt to create inclusive environments. stojanovska-dzingovska and bilic (2012) report in their study that lecturers kept a distant from students with disabilities intentionally as they were afraid of offending their students by using inappropriate idiomatic expressions. furthermore, swart and pettipher (2011) argue that beliefs and attitudes are directly translated into actions and educational practices, and inform decision-making. they further state that attitudes about diversity can either be a barrier to or an enabler in the realisation of an inclusive environment. while participating lecturers did not show strong evidence of reflection behaviour, lecturers need to be aware and be reflective of their perspectives and behaviour. self-reflection, which involves deep inward looking into every action is critical for lecturers to become more aware and active in meeting the needs of all students. this is only possible if lecturers are willing to self-examine their own conceptions. however, short awareness seminars can help in this regard. lecturers in this study had varied backgrounds (race, institutional affiliation, fields of teaching and number of years in the teaching profession). although this was not the focus of this study, one cannot produce any link between lecturers’ biographic characteristics and their perceptions and attitudes regarding disability and students with disabilities in higher education. this differs from previous studies (rao 2002; rao & gartin 2003; vogel et al. 1999), which found a positive relationship between discipline (education, humanities and architecture), age (junior v senior lecturers) and experience with teaching students with disabilities, with the willingness to provide accommodations and support to students with disabilities. a possible explanation for this might be the limited number of lecturers involved in this study. as highlighted in this and other studies (hadjikakou & hartas 2008) that lecturers are not trained to deal with disability issues, it is important for lecturers to receive professional development through disability awareness workshops, emphasising, for example, different types of impairments, the importance of an inclusive environment, how to encourage disclosure among students with disabilities, how to teach and assess the progress of students with disabilities without excluding anyone. attending to identity, stigma, self-worth and self-awareness issues in these workshops will also be important. conclusion this paper examined the role, perceptions and experiences of lecturers regarding disability issues at two south african universities. in trying to create inclusive campuses, lecturers face challenges emanating from both internal and external factors. external factors include absence of a national disability policy for higher education in general and for universities, in particular. internal factors include the lack of knowledge, responsibility and skills in addressing the needs of students with disabilities. although different policy statements refer to the rights of students with disabilities in south africa, they do not completely spell out how to implement the imperatives raised. this lack of guiding frameworks results in universities approaching disability differently, resulting in ad hoc and uncoordinated efforts towards disability matters. while institutional policy frameworks are important, personal responsibility on the part of the lecturers in expanding the opportunities of all students is important. self-reflective curriculum is vital in this case for the creation of a student-centred approach that enhances learning for all students. collaborative efforts among all the stakeholders (academic staff, supporting staff, administration and students with disabilities) are required to create a supportive education system and make inclusion of students with disabilities in higher education a reality. inclusion agenda can succeed if interventions account for and address dominant barriers that lecturers face in their quest to create inclusive environments. more needs to be done to help lecturers in south africa to appreciate and deal with diversity issues, especially disability. there needs to be a shared sense of responsibility among all lecturers and other university stakeholders for meeting the needs of students with disabilities. acknowledgements this research was supported by the south african research chairs initiative of the department of science and technology and the national research foundation of south africa (grant number 86540). the authors are also grateful to the editor and the anonymous reviewers for their constructive input. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions this study was part of a phd project 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footnotes 1. in this paper, disability refers to disadvantages caused by multiple factors (social, economic, political, environmental and personal) on people with various impairments. 2. these include workers, mature students, female students and disabled students. 3. this paper is entitled ‘special needs education: building an inclusive education and training system’. abstract introduction methodology findings discussion limitations of the study conclusion acknowledgements references about the author(s) naomi likumbo division of nursing and midwifery, department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa tania de villiers division of nursing and midwifery, department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa una kyriacos division of nursing and midwifery, department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation likumbo, n., de villiers, t. & kyriacos, u., 2021, ‘malawian mothers’ experiences of raising children living with albinism: a qualitative descriptive study’, african journal of disability 10(0), a693. https://doi.org/10.4102/ajod.v10i0.693 original research malawian mothers’ experiences of raising children living with albinism: a qualitative descriptive study naomi likumbo, tania de villiers, una kyriacos received: 19 nov. 2019; accepted: 08 feb. 2021; published: 20 apr. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 malawians of all ages are affected. children with these features face extreme forms of human rights abuses, even death. objectives: this study aims to describe malawian mothers’ experiences, perceptions and understanding of raising children with albinism (cwa). methods: the study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. mothers, 18 years and older, who had given birth to a cwa and who attended the dermatology clinic of a local public hospital participated. an interview guide used during standardised, open-ended interviews was translated from english to chichewa using forward and backward translation. interviews were conducted in chichewa, audio recorded, transcribed and forward and back translated from english to chichewa. thematic data analysis was employed. results: the mean age of participants (n = 10) was 33 years; two had albinism. emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism. conclusion: in our limited study, mothers’ self-reported experiences of raising cwa in malawi highlight the need for educational programmes on albinism at national level, particularly for families with a cwa, health professionals and educators. keywords: albinism; albinism in africa; albinism in malawi; albinism killings; children living with albinism; maternal experiences; oculocutaneous albinism; stigma and albinism. introduction ‘albinism represents a group of inherited abnormalities of melanin synthesis’ (oetting, brilliant & king 1996:330) in the skin, hair follicles and parts of the eye responsible for vision. more melanin, resulting in darker skin colour, protects individuals from the harmful effects of ultraviolet (uv) light. people with albinism have a reduced amount of melanin or no melanin at all. in the group of conditions associated with albinism, only oculocutaneous albinism (oca) is relevant to the present study. oculocutaneous albinism is characterised by hypo-pigmentation or lack of pigmentation of the iris and retina of the eyes, hair follicles and skin (kromberg 2018a) when compared with others of the same ethnic and racial backgrounds. individuals who have oca have pathogenic variants in both copies of the relevant oca gene and inherit one of these from each parent, both of whom are carriers (national health service 2017). for persons with oca, exposure to intense sunlight puts them at risk of developing skin cancer, which can result in morbidity and mortality (kromberg 2018a) but in itself, albinism does not cause mortality (tandon 2016). although data are not current, a prevalence of albinism of 1/1000 is reported for a few specific ethnic group isolates in southern africa, and an overall estimate ranging from 1/5000–1/15 000 has been made for the general population (hong, zeeb & repacholi 2006). as albinism affects individuals and their families medically, socially and psychologically, access to healthcare and to a range of healthcare and disability practitioners is essential. the wide-ranging effects of albinism are associated with disability (who 2018b). in the context of albinism, disability is defined in terms of activity limitations (because of visual impairment which may require assistive devices such as low vision aids) and participation restrictions (in outdoor activities because of extreme sensitivity of the skin to uv radiation (who 2018a). the who’s overview of disability (2018b) confirms that presently the understanding of disability is not confined to a physical or medical perspective, but takes into consideration a person’s physical, social and political context. the medical model and definition of disability may be more commonly understood amongst healthcare practitioners (hcps) than viewing disability as a social constructionist paradigm (donoghue 2003). over time, the traditional medical approach to disability has been replaced by three types of inquiries into disability: the ontological, epistemological and the experiential (oliver 1996). persons living with albinism (plwa) primarily are social beings whose bodies may be afflicted with a medical disorder that makes them physically different from others, but who still need social support, a basic human need (chang & schaller 2000). in the context of african american ancestry and the association with hypertension, ‘[t]he hypothesis that skin colour is a marker of exposure to social stressors refers to the cultural significance of skin colour as a criterion of social classification’ (gravlee, dressler & bernard 2005:2191). the social and emotional impact of a skin condition can be considerable and can lead to social inequity (papadopoulos, bor & legg 1999), which might have implications for plwa. a person with poor vision who requires optical correction and may need special equipment to be employable, and who cannot work in a sun-exposed environment without costly protective clothing or a topical sunscreen, is often stigmatised (cruz-inigo, ladizinski & sethi 2011). if one’s physical features are very different from the rest of society, this can lead to discrimination and possibly preclude employment which can result in poverty (gravlee et al. 2005). when considering albinism, the concept of disability, in its broadest sense (oliver 1996), is more applicable and more useful than applying the medical model. parental guilt is sometimes associated with genetic conditions. in a south african study, guilt was less evident amongst parents with formal tertiary education (16/174, 6.3%) and amongst parents of children with visual impairment (cwvi) (14.3%) (useh 2008). of the parents of cwvi which included albinism, 82.1% displayed grief, 75% anger and 67.9% attributed their guilt to the double impairment of skin and sight and to societal prejudices and stigma associated with albinism (useh 2008). socio-demographic statistics indicate that landlocked malawi, located in southeast africa, with a population of 17 196 629 is one of the least developed and impoverished countries in the world (central intelligence agency 2020). of the population, 62.1% are 15 years of age and older and most can read and write (69.8% men; 55.2% women). the economy is predominately dependent on agriculture, with corn and tobacco being the staple crops, and 80% of the population living in rural areas are employed in agriculture. there are financial implications for plwa, in an impoverished agrarian society, who need employment and money for sun protective clothing, topical sunscreen and transportation to dermatology clinics. clinics provide not only free sunscreen lotions but also information on albinism, which is essential for parents of children with albinism (cwa). epidemiological studies are needed on malawian plwa who have ocular disorders and are employed in the agricultural sector, regardless of the harmful effects of uv rays on the eyes (who 2003). poverty, illiteracy and ignorance, problems found in many parts of africa, contribute to stigmatisation of people with albinism (cruz-inigo et al. 2011). in communities steeped in traditional myths and beliefs, where knowledge of albinism is lacking, as in malawi (braathen & ingstad 2006), plwa are ostracised and sometimes kidnapped, mutilated and killed (mwananyanda 2019). in one research project, individual in-depth interviews with 25 malawian plwa and their family members focussed on knowledge, beliefs and behaviour related to albinism (braathen & ingstad 2006). systematic reviews of oca and sun-induced adverse health effects on the skin and eyes of individuals with oca in sub-saharan africa excluded malawi (hong et al. 2006; wright et al. 2012). no studies could be found that have focused on the malawian context, specifically exploring the experiences, perceptions and understanding of albinism from the perspective of mothers of cwa, which is the focus of this study. methodology design of the study ‘a qualitative descriptive study was the method of choice because straight descriptions of phenomena were desired’ (sandelowski 2000:334). this design draws on the tenets of naturalistic inquiry to study something as it is (creswell & miller 2000). participants and setting the study population consisted of mothers of cwa who attended the dermatology outpatient clinic at the queen elizabeth central hospital (qech) in blantyre, malawi, a government institution for referrals from surrounding districts. the hospital is located along the main transport route, increasing accessibility for patients. one day a week, the dermatology clinic attends to plwa of all ages who have skin-related conditions and dispenses free topical sunscreen. those who also have ocular conditions are referred to the ophthalmology department. the nature of the study required responses from persons with experience of the study’s focus, and therefore, purposive sampling of participants was employed to ensure rich information to achieve the aim of the study (eds. denzin & lincoln 2000). the hcps at the clinic selected the participants according to the following criteria: birth mothers, with or without albinism, aged 18 years and older, of cwa up to 18 years of age, who attended the clinic. participants could speak english or chichewa fluently. an individual under the age of 18 is considered to be a child (unicef 1990). data collection and analysis a two-part interview guide was constructed (n.l.) in english from the existing literature and examined, by the second and third authors of this article (u.k., t.d.v.), for logical layout, adequacy of content and length. part 1 questions dealt with the mothers’ experiences and perceptions of having a cwa. part 2 questions explored the mothers’ understanding of albinism. the interview guide was translated from english to chichewa independently by a carefully screened school teacher and nurse, using forward and backward translation (tsang, royse & terkawi 2017). they did not have albinism. individual face-to-face interviews between the interviewer (n.l.) and the mothers were conducted between 28 june and 12 july 2018. data collection continued until no new data emerged from the interviews (malterud, siersma & guassora 2016). on the day of appointment, the interviewer (n.l.) would approach potential participants individually introducing herself and the study. participants would give written informed consent for voluntary participation after reading the contents of the participant information sheet or having it read to them. the information given covered: the purpose of the study, ethical clearance, time and setting needed for the interview (30 to 45 min), nature of the interview, measures to ensure confidentiality of data and anonymity, and freedom to discontinue participation without penalty or refusal of further healthcare treatment. refreshments were provided during the interview. the offer of a separate facility close by for participants’ own child minders was only taken up by one participant. pseudonyms of the participants’ choice are used. there is no fixed sample size in qualitative research but the number of participants is determined when ‘information power’ (malterud et al. 2016:1758) is achieved. in the present study, a sample of ten participants was adequate to reach data saturation. interviews were conducted in chichewa, audio recorded and transcribed, and transcriptions were forward translated into english and back-translated into chichewa (n.l.) (tsang et al. 2017). the standardised open-ended interview seemed the most suitable as participants were all asked identical questions ensuring a consistent approach (turner 2010). although the wording of questions was extremely structured, the questions allowed open-ended responses (gall, gall & borg 2003) permitting participants to volunteer as much detailed information as they were comfortable with. it also allowed the interviewer (n.l.) to ask probing questions as the need arose to obtain thick, rich data (creswell et al. 2007). weaknesses with open-ended interviewing techniques include the vast range of responses resulting in difficulty extracting similar themes from the interview transcripts and coding the data (creswell et al. 2007). however, the deep immersion in the data analysis process reduces researcher biases (gall et al. 2003). thematic data analysis involved preparing, coordinating and examining the data, identifying themes and interpreting results systematically after familiarisation with the data, yet allowing for an eclectic but reasonable approach to analysis (clarke & braun 2013; lewis 2015; sandelowski 2000). interview transcriptions were read and reread many times before extracting similar themes by manually colour coding the data (n.l.). files containing colour-coded english transcriptions, a table with significant statements, formulated meanings extracted from these statements, and initial themes were encrypted and sent electronically to the collaborating researchers (co-authors u.k. and t.d.v.) in south africa. each author independently examined the themes and suggested modifications; changes were accepted when consensus had been achieved. participants were then consulted telephonically by prior arrangement (n.l.), to confirm the final themes (and to achieve rigour of the findings by member checking) (trochim 2006); there was no disagreement. at the completion of the study, two checklists were completed (n.l.) to achieve transparency in reporting the study and its findings and to allow replication: a 32-item checklist, the consolidated criteria for reporting qualitative studies (coreq) (tong, sainsbury & craig 2007) and a 21-item checklist, the standards for reporting qualitative research (srqr), to evaluate the quality and strength of the completed study (o’brien et al. 2014). information in both checklists was found to be satisfactory (u.k., t.d.v.) and an accurate record was maintained. ethical considerations the study was approved by the human research ethics committee (hrec) of the faculty of health sciences of the university of cape town (hrec 828/2017) and the national committee on research in the social sciences and humanities in malawi (ncrsh p.05/18/271). findings information power (malterud et al. 2016) was achieved after interviewing 10 participants and their demographics are presented in table 1. table 1: demographic characteristics of study participants (n = 10 malawian mothers of a biological child with albinism). the mean age of the participants was 33 years. two participants had albinism: doreen, 43 years old, and linesi, 33 years old. both participants were still married, as were four others. the demographic characteristics of the cwa presented in table 1 refer only to the children who attended the clinic on the day of the interview. details of other siblings who may have had albinism were not requested but were referred to by some of the participants. themes that emerged from descriptions of mothers’ experiences related to the chronology of events (sandelowski 2000): how they felt after seeing their baby for the first time; reactions of nurses or midwives and family members to them and their child; raising a cwa in their community; and their lack of knowledge and understanding of albinism. how participants felt after seeing their baby for the first time sub-themes emerged from participants’ descriptions of their reactions to seeing their baby for the first time: (1) they expressed degrees of ownership or distancing, for example, using words such as ‘my child’: ida, catherine, clara; ‘the child’: fanny, linesi (who had albinism); ‘a child with albinism’: chrissy; ‘children of this kind’: martha, fatima; and ‘it’: agi, doreen (who had albinism); (2) acceptance of their child, which was immediate for ida, catherine, linesi, chrissy, clara and agi versus expressions of initial pain (doreen and fanny) and disappointment (martha), or being non-committal but anticipating skin problems in their child (fatima). the role played by their religious beliefs with regards to the participants’ acceptance of their children was clearly described by martha, agi, catherine, doreen and chrissy. in summary, responses towards their child with albinism ranged from immediate gratitude and happiness to initial emotional pain, disappointment and concern. participants’ perceptions of reactions of nurses or midwives and family members towards them and their baby descriptions were of initial surprise shown by some hcps and interpreted by clara, catherine and linesi as a phenomenon not often encountered. but in one case, the surprise was ‘because his skin was clear with no black spots nor rashes …’ (martha). some hcps expressed happiness, which ida surmised was probably intended not to disappoint the mother, and one reportedly advised agi to obtain supplies of topical sunscreen from the hospital. both chrissy and fatima who had had a caesarean section did not remember the hcps’ reactions. conversely, some hcps’ lack of patient education and vagueness resulted in confusion and the mothers’ distrust of their competence: ‘yes, there were doctors who told me that my child had no problems and that i must take care of the child. i just do not understand why things happen that way’. (fanny) ‘they … did not tell me anything. i was only told how to care for my child at a certain age at the under-five clinic. because of ignorance maybe.’ (doreen) ‘the midwives … said the child is a human being but different from other children.’ (linesi) one participant expressed a very real sense of fear and that harm was intended to her infant: ‘they did not say anything to me or show me my baby but went straight to my mother and asked what they should do with the baby … maybe some people ask midwives to kill their children when they are born with albinism’. (catherine) acceptance of a cwa by family members was either unconditional (ida, agi) or conditional: ‘… my husband’s family did not accept the child … my husband sent me home to my parents for six months till they got back to their senses. … because my husband does not have albinism’. (catherine) some paternal families made hurtful accusations (catherine, fanny and chrissy) that the participants must have slept with a man with albinism to have given birth to a cwa: ‘my family accepted my child and they love him but my husband and his family did not accept the child and their relationship with the child is not good. i … heard that they think i had slept with another man with albinism because the father is black in complexion’. (fanny) disappointment amongst relatives was linked to the participant being the first one in the family to have given birth to a cwa and to difficulties associated with caring for such children in protecting them from harmful effects of the sun (clara). three participants experienced mockery by their respective families, and this was painful. fatima attributed the mockery to lack of understanding, whereas chrissy thought that her sister-in-law may not have seen a cwa before: ‘some … mocked me … how could i give birth to a child who stinks or smells like the sun he is going to bring calamity to us. … because it was surprising and strange to them’. (martha) surprisingly, doreen, who had albinism, and two cwa reported that her family referred to her youngest child as ‘the white person’ and, whether in jest or not, said that they were going to sell her. remarkably, linesi, who also had albinism, made little contribution to this question. raising a child with albinism in the community some sub-themes described above re-emerged from the data for this section. themes included: beliefs and myths, social isolation and discrimination, mockery, the mothers’ fear of their children being abused and killed, divorce, financial deprivation and implications for educational opportunities. beliefs and myths ‘pregnant women also chase him, saying he will bring calamity … will make them deliver a child with albinism’. (martha) ‘… but other people spit and some parents tell their children to touch their hair when they see her. i think and i have heard that they do so to prevent their children from turning into a child with albinism’. (catherine) ‘…they think a person with albinism is not a human being, does not live long, just disappears’. (doreen) chrissy’s neighbours discouraged her from collecting sunscreen at the clinic, believing that the staff use this to entice plwa for evil purposes, but chrissy refuted this because during the 6 years she had attended the clinic no harm had come to her child. social isolation and discrimination martha, chrissy, linesi and doreen felt despised by family and community members. doreen’s 18-year-old daughter with albinism feared dating a ‘normal man’ out of distrust: ‘… his friends isolate him because of his appearance … some relatives and friends segregate the child sometimes …’ (clara) ‘…he is segregated by friends at school to the point that he refuses to go to school sometimes … friends refuse to play with him’. (martha) mockery and name calling the participants experienced mockery of their children and name calling as particularly painful because it entrenched their own sense of social isolation and humiliation caused by others who discriminated against their cwa: ‘his friends mock him, isolate him and call him a white person….’ (martha) ‘i have been despised that i and my children resemble a pig’. (doreen) ‘some relatives call her names such as napweri [dry pigeon peas], mzungu [white person]. people say that they stopped eating pork because of me, that i resemble a pig’. (doreen) fear fanny was especially fearful at night and slept fitfully because a plwa had told her that one night he had been stabbed whilst successfully warding off people trying to amputate his genitalia. fatima expressed awareness from a supposedly reliable source that cwa are at risk of disappearing or being killed. she recalled a recent incident when she could not find her son outside the house and was told that he had followed a man who summoned him. fatima and her neighbour ran after them, but the man suddenly disappeared and when asked, her son said that he had told him he is a ‘bwana’ [‘sir’], leaving fatima even more fearful: ‘i feel worried especially when i hear stories of people with albinism being abused and killed, i feel sorry for myself and scared …’ (clara) ‘people call my child makobiri [money]. they say my child can be a source of money if i sell her. some friends have suggested to me that hospital staff might have exchanged my child with the one i have’. (chrissy) ‘there are times when some people have said to me … why i did not kill the child when he was just born’. (agi) agi’s report above was supported by fanny who described how some of her friends have asked her directly why she does not kill her child. she dissociated herself from them. marital relationships catherine felt disgraced when her husband sent her to her parents for 6 months after the birth of her cwa. another participant stated that relatives made particularly unkind comments: ‘the main challenge i have gone through is losing my marriage. my ex-husband’s relatives were talking because my husband does not have albinism so i decided to get out of the marriage and take care of my child’. (ida) socio-economic and educational implications the economic challenges the mothers’ face because of the stigmatisation associated with albinism are far reaching. to ensure her child’s safety, catherine placed her in a private school close to home. despite having a malawi school certificate of education, doreen’s 18-year old daughter with albinism struggled to find a job. doreen could not afford to buy a hat or long-sleeved clothes and had no money for transport to the clinic to collect sunscreen for herself and her children. chrissy suggested that an adequate supply of topical sunscreen should be provided between clinic appointments to avoid having to make extra trips to the clinic. fatima, a first-time mother with financial problems had not been informed about the free supply of topical sunscreen at the qech and was paying between 82 and 164 south african rand (zar) for this from a plwa. fanny and linesi disclosed that their children had skin and eye problems. fanny’s parents supported her son financially because his father did not. to help him progress at school, she asked the teacher to write a little bigger on the chalkboard to enable him to read. linesi could not afford spectacles but the teacher moved her daughter to the front of the class to make reading from the board easier. positive experiences there were three accounts of cwa being totally accepted within their neighbourhoods (ida, fanny, fatima), for example: ‘… they help me to take care of the child and advise me not to leave the child alone. one of my neighbours has a child with albinism and she … informed me that free sun cream is provided at the [qech] dermatology clinic’. (fatima) mothers’ lack of knowledge and understanding of albinism themes emerged from participants’ descriptions of understanding of albinism related to the cause of albinism, information given by hcps (doctors, nurses or counsellors) after the birth of their child, reasons for the white appearance of the skin and their poor eyesight, their source of information and the type of information on albinism, their understanding of and response to this information. participants had inadequate or erroneous information on the cause of albinism. martha, doreen and chrissy reported that the malawi broadcasting corporation radio series had denounced the practice of stigmatising plwa but provided no information on the cause or management of the condition. most of our participants did not report actively seeking information to empower themselves, but did not elaborate on this. clara, for example, passively relied on others for information: ‘they did not say anything to me…; they did not tell me anything’. (clara) six participants were evasive; although their children looked different, they were no different to other sentient human beings. examples of some explanations: ‘… when genes are weak, a child fails to develop the top layer skin … i was given an example that if a normal person has an open wound, a white skin appears first before blood comes out’. (ida) ‘… paint in the abdomen [of men] but i have forgotten its name … i don’t know what happens but, it can cause albinism’. (chrissy) ‘… people say it is caused by “mwanamphepo” [an inborn illness]’. (fatima) six participants did not remember hospital staff giving them information about albinism. the remaining participants only recalled information given about the need for skin protection: ‘i was told that this child is different from any other child and needs to be protected from sun and they referred me to this hospital where i get a supply of sun burn cream’. (clara) ‘i was told that he should put on long-sleeved clothes, sun hat and i should apply sun burn cream from the hospital’. (agi) ‘i delivered through caesarean section … i was told nothing by the medical people, they just sent me to cotton weaving company where i got information on how to care for my child’. (chrissy) ‘i was not told why i gave birth to this kind of a child’. (fatima) the data generated from this small study suggest that the participants have little understanding of albinism. if hcps had adequate knowledge of the genetics and inheritance of albinism, considering that plwa are treated at a special dermatology clinic, this knowledge was not evident from the participants’ explanations. discussion lack of knowledge and understanding of albinism by society, but surprisingly also by plwa, is well documented (baker et al. 2010; cruz-inigo et al. 2011; phatoli, bila & ross 2015). this is also the case in malawi (braathen & ingstad 2006). our study findings, which aimed to describe mothers’ experiences, perceptions and understanding of having cwa in malawi, support the published data. lack of knowledge is at the core of the stigma and prejudice (pryor & reeder 2011) associated with albinism and its consequences. lack of knowledge and understanding of albinism mothers who give birth to children with genetic conditions should receive information and counselling from hcps (baker et al. 2010; rantanen et al. 2008) but malawian mothers reportedly had no understanding of the cause of albinism in their children (braathen & ingstad 2006). two participants in our study had albinism, one of whom was the oldest and had given birth to two cwa. surprisingly, she had very little knowledge and understanding of the condition. knowledge of the cause of albinism, before leaving the hospital with newborn children, empowers mothers to disabuse family members and the community of misunderstandings they may have about the condition, which may result in non-acceptance of the mother and/or the child when they go home (cruz-inigo et al. 2011). in venda, south africa, a woman who was ashamed of her baby with albinism hid her until she had received genetic counselling after which she ‘… was able to take her child out because she was able to explain the genetic cause of the condition’ (baker et al. 2010:171). nurses should be familiar with the genetic disorders seen in their communities, have knowledge of referral systems and be prepared to discuss how these conditions are inherited. all 10 cwa in our study had oca, with visual impairment, and had inherited a mutated gene from both parents. as far as the participants could remember, hcps gave them no information on the cause of albinism after the birth of their babies. had the three participants who were reportedly falsely accused of infidelity by their husbands, families and communities known about genetic inheritance in albinism, they would have had the knowledge and possibly the confidence to defend themselves. instead, lack of information resulted in feelings of shame, anger and emotional trauma in these mothers. some participants were given instructions by hcps on the need for skin protection, as in a previous malawian study about knowledge and beliefs from an african setting (braathen & ingstad 2006). in our study participants described the causes of albinism as ‘paint found in men’s abdomen’, ‘problems found in man and woman’ and, as described by tolhurst et al. (2008:89), ‘mwanamphepo’ [an inborn illness]. phatoli et al. (2015) found that three of 10 participants without albinism investigated in a south african student sample had no idea what albinism was, five had some information gleaned from the media but without fully understanding the cause of the condition, whilst two demonstrated knowledge of the condition. the level of understanding of albinism by the five plwa in their study was interpreted as being based on their personal experiences of having the condition, on how it affected their lives and their awareness of the stereotypes and beliefs around albinism (phatoli et al. 2015). of the five students, three understood the medical (hereditary) aspects of albinism. when extrapolated to our study, the difference is that the cwa were not interviewed. therefore, the mothers’ self-reported lack of knowledge could possibly be attributed to not having the condition and being personally removed from it to some extent, but it raises questions about the mothers who themselves had albinism. a survey conducted in zimbabwe found that many cwa did not know the cause of albinism. instead, they cited stories implicating witchcraft and god and they associated albinism with punishment and mockery (cruz-inigo et al. 2011). however, lack of awareness is not restricted to the public, as hcps often also lack understanding of albinism because of its relative infrequency (baker et al. 2010). this may account for the midwives’ shocked reactions reported by two of our participants when they saw their babies. our participants reported that the malawi broadcasting corporation radio series denounced the practice of stigmatising plwa but had provided no further helpful information. genetic nurses in northern south africa reportedly give radio talks on albinism (cruz-inigo et al. 2011). as patient engagement and education is core to nursing practice, information about albinism from nurses would presumably be more easily understood by the population than presentations by reporters. surprisingly, most of our participants did not report actively seeking information to empower themselves. this could be because of the unavailability of other sources of information about albinism as the only media mentioned by participants was the radio. the media have an important role to play in educating the public on inheritance of albinism, but instead have been awash with sensational stories of abductions and killings (mwiba 2018) which may entrench stigmatisation. stigmatisation and its consequences in the context of plwa and particularly cwa, stigmatisation has far reaching effects. cruz-inigo et al. (2011) found that poverty and illiteracy in many parts of africa may result in lack of awareness of the causes of albinism which contributes to stigma. researchers stand accused of not communicating study results adequately to society, resulting in misunderstandings and the formation of a stigma cycle (baker et al. 2010). one consequence of stigmatisation is social isolation and discrimination. because of male dominance in african countries, women are blamed for producing a child with albinism. as in our study, wan (2003) reported incidents of wrongful accusations of infidelity of some women who give birth to cwa, thereby dishonouring their intimate relationships. others may be cursed and their husbands may divorce them (cruz-inigo et al. 2011; franklin et al. 2018; masanjala, mvena & kayunze 2014). six of the participants in our study were still married at the time of the study, and four had been abandoned by their husbands because no one in the husband’s family had albinism. a study conducted in malawi reported that the very visible difference in appearance of plwa can lead to lack of acceptance and a poor social life (lynch, lund & massah 2014). baker et al. (2010) reported the case of a woman with albinism in zimbabwe who, despite having the proper qualifications, was not reportedly employed as she was considered unattractive. a study conducted in tanzania showed that plwa are considered disabled and marginalised (masanjala et al. 2014) and may be labelled as ‘other’ as a consequence of societal beliefs associated with albinism. such beliefs may be promoted by people in the community to justify protecting themselves from death, curses, suffering and evil (imafidon 2017). ‘the beliefs surrounding albinism in southern africa are often found to compensate for such a lack of knowledge’ (baker et al. 2010:170). in our study, four participants were shunned by their friends and felt isolated because of their children’s appearance. one child refused to go to school; such is the power of stigmatisation to affect academic progress, mental health and professional achievement (watson 2012). to be accepted fulfils a basic human need (chang & schaller 2000). our study confirmed findings from the braathen and ingstad’s (2006) malawian study of mothers of cwa who expressed love for their children, believing they are a gift from god. five participants used religion (god) as the reason for their acceptance of their child. brocco (2015) reported that many parents believed that albinism is the will of god, who is the primary source of creation and should not be questioned, which may account for none of the participants in our study expressing parental guilt. three of the mothers in our study (who did not have albinism) expressed immediate love and acceptance of their cwa after their birth, using words of ownership (‘my child’) which implied a sense of acceptance and relationship. for three mothers, including one with albinism, acceptance seemed somewhat delayed once they had come to terms with their self-reported disappointment and pain of having given birth to a cwa because of the implications for themselves and their children. surprisingly, two of the mothers, one of whom herself had albinism, referred to their children as ‘it’. bos et al. (2013) described internalised stigma as a feeling of loss of self-esteem, accompanied by psychological distress as a result of discrimination by society, which might account for these mothers apparent distancing of themselves from their cwa. the concept ‘maternal subjectivity’ best describes the mothers’ responses as ‘founded on both being for the self and for another – one’s child – and thus as something that is paradoxically connected and separate’ (harvey 2015:93). in a south african metropolitan study (kromberg 1987), significantly more mothers of cwa than controls reported postnatal headaches, feelings of depression and not wanting to hold or breast feed their babies, even making plans to return to their families in rural areas. reasons cited were complaints about the infants’ hair and skin colour. acceptance builds self-esteem and psychosocial well-being (kromberg 2018b). in our study, there were three accounts of cwa being totally accepted within their neighbourhoods. such acceptance is also reported by braathen and ingstad (2006). to be accepted by a black african community, when one has the facial features of that community but not the same inherited skin or hair colour, is challenging. one of the mothers with albinism (doreen) had an adolescent daughter who will need parental support to achieve her full potential because, despite having the required qualifications, she was unable to find employment because of her appearance. themes that emerged from a qualitative study investigating the perceptions of 12 adolescents with visual impairments on the social support they received from their parents illustrated processes related to emotional, informational and tangible support (chang & schaller 2000). doreen did not display any knowledge of the aetiology of albinism so her ability to provide informational support to her adolescent daughter is questionable. visual impairment associated with albinism is a potential impediment to socioeconomic advancement if no provision is made for efficient management of eye healthcare services. if there is ineffective intervention for visual impairment associated with albinism at a national level, targeted universal eye health objectives of the vision 2020: the right to sight project will not be achieved. the objectives are: (1) to eliminate causes of avoidable blindness, (2) the development of human resources and (3) the provision of appropriate technology and infrastructure (holland & resnikoff 2019; resnikoff 2000). if cwa are not educated, discrimination continues into adult life because they may be unemployable, in this way violating the following united nation’s sustainable development goals: no. 3 (good health and well-being), no. 4 (quality education), no. 8 (decent work and economic work) and no. 10 (reduced inequalities) (united nations 2019). educational institutions are an integral part of the formal social support system and should provide students who have visual impairments with special support to meet their educational needs in mainstream education in malawi and to ensure their efficient functioning within society (lynch et al. 2014). low vision aids are advocated for plwa who have more serious eye conditions than refractive errors that can be corrected with spectacles (minto & awan 2004). cwa are judged by their appearance, but when given the opportunity to realise their potential, they can succeed in life (baker et al. 2010). george and duquette (2006) described a case study of a grade 6 student with albinism who progressed academically in a rural school in ontario, canada, largely because of his mother’s support and the chance to explore his potential. in our study, one participant intervened on behalf of her son who could not see the teacher’s writing on the board. teachers should be trained to recognise poor vision, as reported by one participant in our study, and in basic eye testing techniques, particularly in cwa, in situations where school health nurses are not available. inadequate knowledge and understanding of albinism may result in mockery and even harm to cwa, thereby depriving them of opportunities to develop their potential. myths, resulting from lack of awareness and a misunderstanding of albinism in malawi and many other african countries, as found in our study, have led to plwa being mocked. name-calling such as ‘mizukwa’ (ghosts), ‘napweri’ (tomato with white spots) and ‘mzungu osauka’ (poor white person) is painful and results in social isolation and humiliation (baker et al. 2010; cruz-inigo et al. 2011; imafidon 2017; mwiba 2018). two participants in our study who had albinism alluded to the myth about ghosts: in zimbabwe, people with albinism have been considered to be water spirits (machoko 2013). baker et al. (2010:174) described the fear of contagion associated with albinism. cwa, in particular, have been attacked, kidnapped, mutilated and/or killed by people practising witchcraft or for the sale of body parts (cruz-inigo et al. 2011; mwiba 2018). two participants in our study were asked by community members why they allowed their children to live and one participant reported living in fear, especially at night after a man with albinism had been stabbed by people attempting to amputate his genitalia. interventions by the malawian government to protect the rights of plwa include a national disability policy, which was finalised in 2005 (braathen & ingstad 2006). in tanzania, such measures include the provision of mobile telephones, the nomination of a woman with albinism to parliament and burning witch doctors’ licences (kisanga & mbonile 2017). the high level of illiteracy in tanzanian communities, compounded by the low level of secondary and tertiary education, resulted in discrimination that perpetuated the disregard of human rights of plwa and unequal access to education (kisanga & mbonile 2017). the high level of illiteracy in malawi and tanzania may contribute to the reasons for the failure of these interventions in these countries but this has not been reported. for these reasons, a special boarding school was opened in tanzania to protect cwa who had been abused and abducted (brocco 2015). although no published evidence was found to support our participants’ perceptions that registered nurses and midwives in labour wards in malawi may be involved in killing newborns who have albinism, there are accounts of traditional midwives committing infanticide in instances of albinism and then reporting a stillbirth (cruz-inigo et al. 2011). journalists have risked their lives to report the occult-based killings of plwa (in parts of burundi and tanzania) for use as talismans to bring luck and wealth: a complete set of body parts; four limbs, genitals, ears, tongue and nose may earn the equivalent of 75 000 us dollars (international federation of red cross and red crescent societies 2009). in february 2019, amnesty international reported an escalation in the number of killings and other human rights abuses, including abductions and robberies against plwa in malawi since november 2014 (mwananyanda 2019). mwananyanda (2019) estimated the population of plwa in malawi to be between 7000 and 10 000, representing a ratio of 1 in every 1 800 persons and reported that two fatalities and three abductions had been reported since december 2018, two of whom were rescued by community members. living with constant fear is an infringement of the right to life of this population and does not only have psychosocial effects for the person involved (hong et al. 2006) but also for mothers of cwa (kisanga & mbonile 2017). torner, a tanzanian advocate for plwa, made a plea to local and international organisations to assist in protecting the rights of plwa as human beings (allawh & norton 2014). mothers of cwa face many challenges. lynch et al. (2014) recommended that governments should support parents in decision-making regarding their children’s education and future employment prospects. more research and funding are needed for awareness campaigns and workshops and for the establishment of counselling centres in health settings where mothers of cwa can be educated about the condition (cruz-inigo et al. 2011; imafidon 2017). limitations of the study a pilot study was not conducted to test the interview guide for flaws or other weaknesses and to allow for revision (brinkmann & kvale 2018; turner 2010). this omission resulted in little variation in participants’ responses to two questions. these questions could have been merged and more questions added. of more importance, a pilot study may also have shown the limitations of the research design. ‘researchers conducting qualitative descriptive studies stay close to their data and to the surface of words and events’ (sandelowski 2000:334). fidelity to this approach resulted in superficial descriptions and therefore ‘thin’ rather than thick, rich data (creswell et al. 2007). descriptions provided by two participants who had albinism, one of whom had two cwa, were particularly disappointing and lacking in substance. employment of a phenomenological design may have been a better match for a sensitive topic such as this study of mothers’ experiences of raising cwa. as none of the researchers have albinism or cwa in this study, the pain experienced by the mothers, particularly those who themselves had albinism, could not be underestimated. also, the participants’ fear of full disclosure to a stranger might not have been fully understood, and this may account for their perceived reticence. backward and forward translation (tsang et al. 2017) of the interview guide, participant information sheet and consent form and of the transcriptions between english and chichewa was fraught with logistical difficulties such as finding qualified translators. selection of participants by hcps at the dermatology clinic not familiar with qualitative research might have led to the exclusion of participants who were more able to provide thick, rich data (creswell et al. 2007) than those who were interviewed. limiting the collection of data to 3 weeks and including only mothers and not hcps or community members might have limited the scope, richness and usefulness of the study data. telephonic rather than face-to-face discussions for member checking may have limited dependability and credibility of the analysed data for emergence of themes. further, as the sample in this study was not a representative one, as it was small and collected from a hospital-based clinic, results cannot be generalised to the larger population of mothers with cwa and plwa living in malawi. conclusion a description of perceptions, experiences and understanding of a small sample of mothers of children living with albinism in malawi has revealed that they and their children are stigmatised and may be unsafe in their communities. nevertheless, these mothers were positive about accepting and loving their children and attempted to protect them from harm whatever the cost. overall, the mothers’ understanding of albinism was poor as they had reportedly been given inadequate information by hcps. these findings should lead to increased awareness and the provision of improved counselling by nurses and other hcps. to our knowledge, this is the first reported malawian study of mothers’ perceptions and experiences; it has begun to address a gap in the existing knowledge in this field and provides a foundation for further research, specific to the larger population of mothers with cwa and plwa in malawi. acknowledgements assistance provided by the queen elizabeth central hospital directors and staff of the dermatology clinic in facilitating the conduct of this study is gratefully acknowledged. we owe a debt of gratitude to all the study participants and the translators. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions n.l. in consultation with u.k. and t.d.v. conceived and designed the study. nl contributed to the data collection. n.l., t.d.v. and u.k. analysed the data. n.l. wrote the manuscript. u.k. and t.d.v. revised and critically reviewed the article for important intellectual content. n.l., t.d.v. and u.k. gave the final approval for the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability a privacy clause concluded with the participants prohibits data sharing from the interviews. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references allawh, r.m. & norton, s.a., 2014, ‘white shadows in a dark land’, jama dermatology 150(12), 1335–1335. https://doi.org/10.1001/jamadermatol.2014.2056 baker, c., lund, p., nyathi, r. & taylor, j., 2010, ‘the myths surrounding people with albinism in south africa and zimbabwe’, journal of african cultural studies 22(2), 169–181. https://doi.org/10.1080/13696815.2010.491412 bos, a.e., pryor, j.b., reeder, g.d. & stutterheim, s.e., 2013, ‘stigma: advances in theory and research’, basic and applied social psychology 35(1), 1–9. https://doi.org/10.1080/01973533.2012.746147 braathen, s.h. & ingstad, b., 2006, ‘albinism in malawi: knowledge and beliefs from an african setting’, disability & society 21(6), 599–611. https://doi.org/10.1080/09687590600918081 brinkmann, s. & kvale, s., 2018, doing interviews, 2nd edn., sage, los angeles, ca. brocco, g., 2015, ‘labeling albinism: language and discourse surrounding people with albinism in tanzania’, disability & society 30(8), 1143–1157.https://doi.org/10.1080/09687599.2015.1075869 central intelligence agency, 2020, ‘the world factbook’, africa: malawi, viewed 07 august 2020, from https://www.cia.gov/library/publications/resources/the-world-factbook/geos/mi.html chang, s.c.-h. & schaller, j., 2000, ‘perspectives of adolescents with visual impairments on social support from their parents’, journal of visual impairment & blindness 94(2), 69–84. https://doi.org/10.1177/0145482x0009400202 clarke, v. & braun, v., 2013, ‘teaching thematic analysis: overcoming challenges and developing strategies for effective learning’, the psychologist 26(2), 120–123. creswell, j.w., hanson, w.e., clark plano, v.l. & morales, a., 2007, ‘qualitative research designs:selection and implementation’, the counseling psychologist 35(2), 236–264. https://doi.org/10.1177/0011000006287390 creswell, j.w. & miller, d.l., 2000, ‘determining validity in qualitative inquiry’, theory into practice 39(3), 124–130. https://doi.org/10.1207/s15430421tip3903_2 cruz-inigo, a.e., ladizinski, b. & sethi, a., 2011, ‘albinism in africa: stigma, slaughter and awareness campaigns’, dermatologic clinics 29(1), 79–87. https://doi.org/10.1016/j.det.2010.08.015 denzin, n.k. & lincoln, y. 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https://www.who.int/news-room/fact-sheets/detail/disability-and-health who, 2018b, disability overview, viewed 10 october 2020, from https://www.who.int/health-topics/disability#tab=tab_1 wright, c.y., norval, m., summers, b., davids, l., coetzee, g. & oriowo, m.o., 2012, ‘the impact of solar ultraviolet radiation on human health in sub-saharan africa’, south african journal of science 108(11–12), 45–51. https://doi.org/10.4102/sajs.v108i11/12.1245 abstract introduction the comprehensive mobility support project method results discussion limitations conclusion recommendations acknowledgements references footnotes about the author(s) surona visagie centre for rehabilitation studies, stellenbosch university, south africa tecla mlambo department of rehabilitation, college of health sciences; university of zimbabwe, zimbabwe judith van der veen christian blind mission regional office, south africa clement nhunzvi department of rehabilitation, college of health sciences; university of zimbabwe, zimbabwe deborah tigere christian blind mission regional office, south africa elsje scheffler centre for rehabilitation studies, stellenbosch university, south africa citation visagie s., mlambo t., van der veen j., nhunzvi c., tigere d & scheffler e. 2016, impact of structured wheelchair services on satisfaction and function of wheelchair users in zimbabwe’, african journal of disability 5(1), a222. http://dx.doi.org/10.4102/ajod.v5i1.222 original research impact of structured wheelchair services on satisfaction and function of wheelchair users in zimbabwe surona visagie, tecla mlambo, judith van der veen, clement nhunzvi, deborah tigere, elsje scheffler received: 31 aug. 2015; accepted: 29 feb. 2016; published: 10 june 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: providing wheelchairs without comprehensive support services might be detrimental to user satisfaction and function. objectives: this paper compares wheelchair user satisfaction and function before and after implementation of comprehensive wheelchair services, based on the world health organization guidelines on wheelchair service provision in less resourced settings, in zimbabwe. method: a preand post-test study with a qualitative component was done. quantitative data were collected with the quebec user evaluation of satisfaction with assistive technology for adults and children and the ‘functioning every day with a wheelchair questionnaire’. data were collected from 55 consecutively sampled wheelchair users, who received a new wheelchair in the study period. qualitative data were collected through two audio recorded focus groups and two case studies and are presented through narrative examples. results: the proportion of adult users who were satisfied significantly increased for all wheelchair and service delivery aspects (p = 0.001 0.008), except follow-up (p = 0.128). the same was true for children’s post-test ratings on all variables assessed (p = 0.001 0.04), except training in the use of the device (p = 0.052). the biggest improvement in satisfaction figures were for comfort needs (44.3%), indoor mobility (43.2%), outdoor mobility (37.2%), safe and efficient, independent operation (33.5%) and transport (31.4%). the qualitative data illustrated user satisfaction with wheelchair features and services. conclusion: the wheelchair service programme resulted in significant positive changes in user satisfaction with the wheelchair, wheelchair services and function. it is recommended that the zimbabwean government and partner organisations continue to support and develop wheelchair services along these guidelines. introduction wheelchairs are often essential assistive devices for persons with mobility limitations. however, wheelchairs, like shoes, are available in different designs and sizes in order to meet different functional, posture support and environmental needs (borg, lindstrom & larsson 2011; pearlman et al. 2008; who 2008). an ill-fitting or inappropriate wheelchair which fails to meet the user’s posture support, functional and/or environmental needs leads to dissatisfaction, which may result in sub-optimal use or abandonment of these expensive devices (mukherjee & samanta 2005; toro et al. 2012). therefore assessment, prescription of an appropriate wheelchair, fitting, user training, maintenance and follow-up are as essential to wheelchair provision as the wheelchair itself (bergstrom & samuelson 2006; de groot et al. 2011; glumac et al. 2009; hansen, tresse & gunnarsson 2004; routhier et al. 2003; samuelsson & wressle 2008; toro et al. 2012; who 2008). wheelchair provision in southern africa and zimbabwe are often dependent on donations. unfortunately, in the past, many donor organisations have provided wheelchairs with no or little accompanying services. often, these donated wheelchairs were inappropriate for the user’s needs (øderud 2014; visagie et al. 2015). visagie et al. (2015) found that users in zimbabwe were much less satisfied with their wheelchairs, wheelchair services and function in their wheelchairs than wheelchair users in resourced settings. the world health organization published guidelines on wheelchair provision in less resourced settings (who wheelchair guidelines) (who 2008). while studies reporting on the implementation of and/or adherence to these guidelines could be identified (borg et al. 2011; visagie, scheffler & schneider 2013), no evidence of the impact of these guidelines on service delivery could be found. greer, brasure and wilt (2012) advocate for the development of an evidence base for wheelchair services focusing on users, interventions, comparisons and outcomes. this paper aims to contribute to this evidence base by comparing users’ satisfaction and function with their wheelchairs before and after implementation of comprehensive wheelchair services based on the who wheelchair guidelines. the comprehensive mobility support project in 2012 the comprehensive mobility support project (cmsp) was implemented in zimbabwe by the jairosi jiri association (jja) in partnership with christian blind mission (cbm) and the zimbabwean ministry of health and child care (mohcc) with financial support from united states agency for international development (usaid). the aim was to improve and professionalise wheelchair service delivery. the project was implemented in six zimbabwean provinces over 37 months (january 2012 to february 2015). by adopting the who wheelchair guidelines and the eight services steps presented in table 1 (who 2008:76) as service delivery model, the cmsp followed a user-centred and rights-based approach. table 1: world health organization guidelines for wheelchair provision in a less resourced setting. outcomes of the comprehensive mobility support project sixteen seating clinics were established in six provinces in zimbabwe. a total of 59 rehabilitation service providers1 were trained in basic wheelchair service delivery and 30 in intermediate wheelchair service delivery using the who basic and intermediate level wheelchair service training packages2 (wstp-b and wstp-i). the training was complemented with follow-up workshops, clinical mentoring and support, and peer support sessions. fifteen of the service providers attended a training of trainer’s programme as a first step towards them qualifying as trainers to provide the wstp-b in the future. twenty wheelchair workshop personnel3 were trained in wheelchair assembly, fabrication, modification, maintenance and repairs. tools, spares, consumables and materials to modify wheelchairs were provided to the six wheelchair workshops supporting the 16 seating clinics. a total of 1316 wheelchairs were procured, distributed between seating clinics and issued to users. rehabilitation service personnel conducted assessments, prescriptions, user training and follow-up. wheelchair technicians assisted with user fitting, made wheelchair modifications, fabricated low-cost posture support devices, refurbished second-hand wheelchairs, and offered repair and maintenance services. design of wheelchairs issued users primarily used basic folding or non-folding, four-wheel frame wheelchairs when they accessed the clinics for a new wheelchair as described by visagie et al. (2015). users were prescribed and fitted with one of the wheelchair designs listed and described in figure 1. these wheelchairs were manufactured in zimbabwe, or imported from kenya and south africa. all these wheelchairs, except the basic folding frame and the compact urban-use wheelchairs, had long wheelbases. all wheelchairs, except the basic folding frame and locally manufactured lorewo wheelchairs, had adjustable settings to optimise fit, posture support, function and propulsion. all wheelchair frames were manufactured from mild steel. the majority of lorewo wheelchairs, the association for the physically disabled, kenya (apdk) and the motivation products had pneumatic rear tyres while the south african products all had semi-solid tyres. figure 1: design and features of wheelchairs issued to study participants. wheelchair users presented with a range of posture support, functional and environmental needs. they were provided with the most appropriate wheelchair available and, where needed, locally made posture support devices were fitted to manual wheelchairs. the posture support wheelchairs were mostly reserved for children who needed all the posture support options of these wheelchairs. method a mixed method descriptive study design with a preand post-test component was done. qualitative data were collected to explore and contextualise quantitative findings through the experiences and perceptions of individual participants (kroll, neri & miller 2005). quantitative phase persons who accessed the 16 seating clinics where the cmsp was implemented, between 31 october 2013 and 28 february 2014, for a manual wheelchair, were consecutively sampled to participate in the study (n = 135). for this pre-test post-test component all who were not previous wheelchair users or did not get a new wheelchair in the study period were excluded. this resulted in 55 participants. quantitative data were collected through a self-designed demographic questionnaire and three standardised tools, that is, the quebec user evaluation of satisfaction with assistive technology (quest 2.0) for adults (demers et al. 2002), the quest 2.1 for children (murchland, kernot & parkyn 2011) and functioning everyday with a wheelchair questionnaire (few) (mills, holm & schmeler 2007; mills et al. 2002). the quest 2.0 and quest 2.1 assess user satisfaction with assistive devices and service provision processes. both tools were found valid and reliable in global north settings (demers et al 2002; murchland et al. 2011). the few assesses users’ perceptions of the impact of the wheelchair on their function through 10 items. the few has been found to capture 96.9%–99.7% of user’s goals in wheelchair use with moderate precision for test–retest reliability (mills et al. 2007). the tools were translated into shona and ndebele. the forward translations were done by two occupational therapists who were native shona and ndebele speakers. a multi-linguist from the medical research council of zimbabwe reviewed and compared both translations to the original english versions for correctness and consistency. pre-test data were collected when users first accessed the service (31 october 2013 to 28 february 2014). post-test data were collected between 3 and 5 months after they received a new wheelchair (1 march 2014 to 30 may 2014). data were coded and entered into microsoft excel before being imported into stata 13.0 for analysis. a two-sample test of proportions was carried out to determine whether there was a statistically significant difference in the percentage of satisfied participants between the preand post-test ratings. an alpha level of 0.05 was selected. qualitative phase the study population for this phase included all users, their family members and/or caregivers who accessed the 16 seating clinics as well as service providers at these clinics. through purposive sampling, 22 participants were identified to participate in two focus group discussions. a further two participants (a boy aged 9 and a woman aged 26) were identified in the same manner to participate in two case studies. the focus group discussions lasted 4 hours each. they were held in a rural setting of masvingo province (january 2014) and in an urban setting of harare province (april 2014). a focus group discussion guide was used. topics explored included: participants’ experiences and problems in life situations. satisfaction with their wheelchairs. how the experience of wheelchair users in zimbabwe can be improved. the focus group discussions and case study interviews were audio recorded and transcribed verbatim. findings relevant to this paper are included as narrative examples under the relevant quantitative sections. ethical considerations ethical approval was granted by the joint research ethics committee (jrec/323/13) of the university of zimbabwe, college of health sciences, and the medical research council of zimbabwe (mrcz/a/1813). written informed consent was obtained from all wheelchair users, parents, guardians and caregivers as appropriate, as well as assent for child participants. parents, guardians and/or caregivers became proxy respondents for participants who were not able to communicate or understand and answer the questions on their own because of the nature of their disabilities. participation was voluntary; participants could withdraw from the study without adverse consequences to them, and participant privacy and confidentiality were maintained. results demographic information the median age of the 55 study participants was 21 years (interquartile range 11–43). there were 29 (53%) adults and 26 (47%) children. the median age of the adults was 42.5 years with an interquartile range of 26.5–62, while that of the children was 11 years with an interquartile range 7–13. the majority (62%) were male and 38% were female. of the adults, one was formally employed and 11 were informally employed. sixteen (64%) of the 25 children whose school attendance was recorded were attending school. slightly more participants lived in urban areas (52.7%) than in rural (40%) areas, while 1.8% lived in peri-urban areas and 5.5% indicated they had to function in both urban and rural areas. the majority of participants used public transport (86.6%). the most common diagnosis was cerebral palsy (43.6%), followed by spinal cord injury/paraplegia (18.2%), polio myelitis (9%) and muscular dystrophy (5.4%). wheelchair services were mostly provided by rehabilitation technicians (62.5%) (table 2). therapists provided wheelchair services to 7.5% of participants. table 2: wheelchair service providers (n = 40) (15 participants could not answer this question). satisfaction of adult participants with wheelchair features and services quest 2.0 manual outlines that items in which between 25% and 33% or more users are ‘somewhat satisfied’, ‘dissatisfied’ or ‘very dissatisfied’ require attention (demers, weiss-lambrou & ska 2000). accordingly, the five-point scale of the quest 2.0 was collapsed into two categories (‘quite’ or ‘very satisfied’ in one category and somewhat satisfied’, ‘dissatisfied’ or ‘very dissatisfied’ in the other category). adult wheelchair users’ preand post-test quest 2.0 ratings are presented in table 3. table 3: comparison of adults’ satisfaction ratings (quest 2.0) with wheelchair features and wheelchair service delivery before and after implementation of cmsp (n = 29). pre-test ratings illustrate low levels of satisfaction (maximum 64.3%) with all wheelchair features and all wheelchair service aspects. in contrast, post-test ratings indicated high levels of satisfaction with 76% or more users satisfied with every aspect of their wheelchair and service delivery. the improvement in the proportion of participants satisfied with wheelchair features was statistically significant for all items (p ≤ 0.002) (table 3). the qualitative data further illustrate user satisfaction with wheelchair features. one of the case study participants described her new wheelchair as ‘a chair made for me’. she continued: ‘i am very satisfied with my wheelchair because they have given me exactly the right size’ (female, 26, user). qualitative data showed that users and providers concurred on the importance of appropriate wheelchair features to enhance safety, function and mobility: ‘… the right size with all safety features is important to me…i think it’s because i used to fall a lot (with previous wheelchair)…’ (male, 25, user) ‘…when i am safe i move faster and i am confident to do it…’ (male, 44, user and provider) according to focus group participants, non-folding wheelchairs and the bulkiness of the folding rigid frame4 design of some of the wheelchairs limited transport options. users preferred folding wheelchairs for easy transportation although they recognised the durability limitations of the basic folding frame wheelchairs with active use in harsh environments: ‘…foldable ones are not durable but they work best when it comes to transportation …i think it’s a 50-50 situation…’ (male, 44, user and provider) ‘… you cannot take it everywhere… it’s not foldable and that’s my problem with this one…’ (female, 33, user) as with wheelchair features, the improvement in satisfaction with wheelchair services was also statistically significant for all items (p ≤ 0.008) except for follow-up (p = 0.128) (table 3). users expressed satisfaction with having a dedicated service offering professional services, as well as the service delivery procedures and the length of time it took to receive their wheelchairs. they were concerned about losing this level of professional support: ‘…our greatest fear is that you may dump us and we will not be getting continued support…’ (male, 27, user) ‘it is much better when you know where to go and be helped on time. it worked well for me…’ (male, 41, user) ‘…they followed the dates they had told me…they were nice to me and the wheelchair is working well…’ (female, 26, user) having wheelchairs available at the clinic level improved service delivery by not only reducing waiting time but also by offering users the opportunity to trial chairs and experience the different features and designs. users were therefore directly involved and engaged with providers on their wheelchair prescription, thus further enhancing a user-centred approach: ‘…waiting period was short because we had the chairs at the clinic…’ (male, 33, provider) ‘when i got it, there were many chairs and i had to try them one by one until i got the right one.’ (male, 27, user) ‘…to provide the best, we need to present options and also hear from the user or caregiver about their surroundings… and they will get the right chair…’ (male, 33, provider) training and information on wheelchair features and functions as well as basic maintenance were provided: ‘we are doing it better and they seem happy, i think it’s because of the training…’ (female, 29, provider) the provision of service kits might have helped participants to maintain their own wheelchairs: ‘… it’s true, service kits will help us service our chairs rather than wait for the rehab centres to do it for us…’ (male, 41, user) a service provider raised concerns about providing follow-up in rural areas: ‘some of them we cannot follow them up, because they live too far from our centres and their areas are not easily accessible by road even in the few instances we get transport.’ (male, 30, service provider) satisfaction of child participants with wheelchair features and services similar to the adults, pre-test quest 2.1 ratings illustrate high levels of dissatisfaction with all wheelchair features and all but one of the wheelchair service aspects. post-test ratings illustrated significant improvement in satisfaction levels with between 79.2% and 100% of users satisfied with the various items (table 4). table 4: comparison of child quest 2.1 satisfaction ratings of child users with wheelchair features and wheelchair service delivery before and after implementation of cmsp (n = 26). all changes in satisfaction with wheelchair features and services were statistically significant (p ≤ 0.04), except for training in the use of the device, which showed acceptable satisfaction levels in the pre-test (77%) (table 4). the impact of appropriate wheelchair features on function, posture support, safety and comfort is illustrated by user feedback: ‘…i am safer and comfortable in this one… it’s the right size, i like it and its beautiful too…’ (female, 11, user) ‘… it’s not giving me problems, it’s not making me fall…’ (male, 9, user) ‘i have seen a great improvement especially that she can now sit upright in her chair… i am happy for now…’ (female, 39, caregiver) similar to adults, users and caregivers expressed satisfaction with services and being included in the decision-making process, but were concerned about future services. ‘…we were asked for our input, like what we preferred on this one. i am happy he is using it…he goes out to play with others…i think its light and it’s the right size for him…’ (female, 47, caregiver) ‘if [user’s name] outgrows the current wheelchair, is the programme going to help him get another one?’ (female, 47, caregiver) pneumatic tyres which required regular maintenance to fix punctures created problems for users. tubeless tyres were preferred in the prevalent rough terrains of both rural and urban settings: ‘… i like playing with my friends but my tyres usually give me a problem because they puncture easily. yes, our play areas are not good for inflatable tyres; maybe tubeless ones will help…’ (male, 9, user) function with wheelchair pre-test ratings show that between 41.8% and 74% of participants felt their previous wheelchair contributed to function, independence and mobility (table 5). the proportion of satisfied users improved to more than 75% through implementation of the cmsp. this improvement was statistically significant in all categories (p ≤ 0.005) with a small confidence interval range (table 5). the biggest improvement was shown in comfort needs (44.3%); indoor mobility (43.2%); outdoor mobility (37.2%); safe, efficient, independent operation (33.5%); and transport (31.4%). table 5: comparison of ‘functioning every day with a wheelchair questionnaire’ ratings before and after cmsp services (n = 55) user feedback from the qualitative data emphasised participants’ satisfaction with function in their wheelchairs. users reported improved independence, integration and participation, and many felt that they were now contributing to household activities rather than being a burden: ‘i can go play outside… that’s why i like this one…’ (male, 9, user) ‘i am very satisfied when i do my work in my wheelchair without asking for too much assistance. the thing is, i don`t want to be seen as using people to do my work just because of my disability…’ (male, 27, user) ‘i am very happy i can go where i want and can play with my friends in my wheelchair.’ (male, 9, user) ‘…when it helps me do what i want to do and go where i have to go…it’s like i am no longer a burden and that’s what i prefer…’ (female, 33, user) ‘my child is now able to do most things on her own including assisting with sweeping the house.’ (female, 35, caregiver) discussion satisfaction with wheelchair features and function a marked improvement between preand post-test scores in both satisfaction with wheelchair features and function were seen. the adult post-test satisfaction ratings with wheelchair features were similar to findings from resourced settings (figure 2) (bergstrom & samuelson 2006; de groot et al. 2011; samuelsson & wressle 2008). figure 2: comparing adult quest 2.0 satisfaction ratings with wheelchair features at baseline pre-cmsp, after implementation of the post-cmsp and other studies. significant improvement in indoor and outdoor mobility was reported (table 5). pre-test ratings demonstrated a large difference between satisfaction with performing functional tasks and indoor and outdoor mobility. post-test indoor mobility ratings are on par with functional tasks while outdoor mobility was slightly lower (table 5). as demonstrated by visagie et al. (2015), any wheelchair will facilitate independence and the ability to do functional tasks. however, if the wheelchair does not match the environmental needs, satisfaction with mobility is lower than for function (visagie et al. 2015). appropriate wheelchairs that match both functional and environmental needs led to a significant improvement in mobility and satisfaction with task performance. furthermore, satisfaction with safe and independent operation also improved significantly (table 5). key features such as adjustable centre of mass and rear wheel settings together with a longer wheelbase improved mobility, safety and function, particularly over rough terrain (karmarkar et al. 2009; medola et al. 2014; rispin & wee 2015). three of the wheelchairs were semi-lightweight (16 kg), which could have further contributed to improved function and mobility (karmarkar et al. 2009). all wheelchairs were available in a range of sizes which do not only facilitate fit, comfort and posture support but also allowed improved function and independence. comfort together with ease of use had been associated with a significant improvement in satisfaction (karmarkar et al. 2009). satisfaction with wheelchair features was strongly associated with satisfaction in function and participation in the qualitative data. users who were satisfied with their function, independence and participation in life roles were also satisfied with the wheelchair. similarly, other authors have found that satisfaction with wheelchair features is associated with improved participation (de groot et al. 2011) and quality of life (chan & chan 2007), and that an inappropriate wheelchair can limit participation more than the impairment and/or the environment (chaves et al. 2004). some features reportedly had a negative impact on function. the non-folding designs and the bulky components of folding rigid frames often resulted in transport challenges. in a south african study which reported similar transport challenges (visagie, duffield & unger 2015), further research in wheelchair design is advocated to improve foldability but maintain the benefits of a rigid design such as reduced weight and improved durability and ergonomics for mobility and stability. the second challenge was related to pneumatic rear tyres where punctures limited function and participation. the increased cost of flat-free solutions may be outweighed by the gains in independence, satisfaction and participation. all semi-lightweight wheelchairs provided through the cmsp were rigid frame wheelchairs. the only available folding frame active wheelchair was relatively heavy and available in four adult sizes only. there was no suitable alternative other than the basic folding frame for users who needed an active wheelchair with posture support options such as a higher backrest and armrests. the availability of an adjustable folding frame wheelchair would have effectively filled this gap. adult users reported a large improvement in comfort with the proportion of satisfied participants increasing from 26% to 96.7% (table 3). comfort in this study was also rated higher than in studies from resourced settings (figure 2). this might be because users in the current study after having mostly used wheelchairs with no adjustable posture support features have now for the first time received a wheelchair which fitted well, and was tailored to their posture support needs through the multiple posture support features of the available wheelchairs. their previous wheelchairs were often only available in limited sizes, had little posture support options or adjustments and were provided with no or fragmented accompanying services (visagie et al. 2015). it is unlikely that wheelchair users in european countries ever experienced the discomfort of these limitations in their wheelchairs and services. satisfaction with wheelchair services in the current study, post-test satisfaction ratings for wheelchair services surpassed that of studies in resourced settings (figure 3). rather than the services being exceptional, this is probably more a reflection of the immediate impact of structured services after a previous void. key service elements on which users reflected positively in the focus groups included having a service available, short waiting periods, timeliness, trained staff, a user-centred approach and user training. these factors ultimately culminated in ‘a chair made for me’. figure 3: comparing adult quest 2.0 satisfaction ratings with wheelchair services at baseline pre-cmsp, after implementation of the post-cmsp and other studies. all clinical wheelchair service providers in this study were trained in basic and intermediate wheelchair service delivery. wheelchair users commented positively on provider knowledge and associated this with improved satisfaction with wheelchair services. service providers in this study were primarily rehabilitation technicians, thus confirming that wheelchair service delivery is more dependent on appropriately trained staff than a specific category of staff (un 2006; who 2008). despite external funding support, service delivery was not without problems and/or limitations. shortcomings in available wheelchair design and technology was discussed before. follow-up was also flagged as a problem by users and service providers, particularly for those users from more remote areas because of distances, road infrastructure and transport challenges. these three challenges are not unique to the study setting and a very real concern in large parts of africa (porter 2014). while not statistically significant, the proportion of adult users that were satisfied with follow-up increased from 57% to 76%. the lack of statistical significance might be because the proportion of adult users who were satisfied by pre-test follow-up services was already above 50%. however, it is more likely that because of the short time period between receiving the wheelchair and post-test data collection (3 to 6 months), participants had not needed follow-up services other than for purposes of the study. as this project received specific funding, sustainability of the services in the current economic context is a concern and one which was flagged by users. according to riddel (2014), initial success of foreign aid projects does not necessarily translate into ongoing success, as sustainability challenges can develop over time, unless projects strengthen public institutions and encourage the retention of skilled staff. the cmsp was based on partnerships between the existing service providers, the government and non-government organisations (ngos). existing service providers received ongoing training and capacity building over an extended period to ensure adequate time for mentoring and support. although losing skilled staff always remains a risk, the high number of rehabilitation technicians trained might contribute to a stable, skilled workforce as this cadre has limited options for employment outside their current employment sector and country. it is expected that donations will remain the main vehicle for obtaining wheelchairs, and sustainability of wheelchair services will therefore be dependent on appropriate management, coordination and distribution of wheelchair donations. the main concern about sustainability remains the funding of spares, materials and consumables. without these items, follow-up, repair and maintenance services, as well as provision of posture support devices, will be severely hampered. limitations the following limitations must be kept in mind when interpreting and using study results. the study sample was small (n = 55). the focus groups included users and service providers which might have inhibited honest participation from either or both groups. some of the data collectors were also service providers at the seating clinics. even though the data collectors and the standard participant information sheet (translated into the two vernacular languages) emphasised that neither refusal nor honest opinions would negatively influence service provision, it could have caused bias as participants may have wanted to please service providers with their answers in order to gain favour and future services. furthermore the existing wheelchairs which were scored during pre-test evaluation might have been old or even broken and not in the same condition as when issued new. thus, these wheelchairs might have been compared unfavourably with the new wheelchairs of the post-test. users might not have been able to recall their initial satisfaction with and function in the pre-test wheelchair. users might also have struggled to recall their satisfaction with services provided a long time ago. based on the manufacturer warrantees of the majority of the wheelchairs issued, the lifespan of the wheelchairs should exceed 3 years. thus, assessing durability after 3 months will not provide a true reflection of the durability of the wheelchairs. reliability and validity of the measuring instruments in the study context were not assessed. context and culture can influence the way in which people understand and respond to questions. it can also influence user’s views on the relative importance of variables. thus, variables important to the current study population might not have been assessed by the tools. conclusion the post-test quest and few ratings following the implementation of the cmsp demonstrate statistically significant improvement in satisfaction with all except two categories (adult satisfaction with follow-up and child satisfaction with training) of wheelchair features, service delivery and function. the study findings also illustrate that wheelchair users in low-resource settings can experience similar satisfaction levels with wheelchairs, services and function as wheelchair users from resourced settings, despite fewer resources and using more basic technology. since the cmsp was based on the who wheelchair guidelines (who 2008), one might also conclude that service provision in accordance with these guidelines does result in satisfactory wheelchair services and improved user function in less resourced settings. this study further demonstrates that problems with sustainability, particularly related to funding and service providers, might be expected. recommendations it is recommended that the zimbabwean government together with the current partner organisations continue to support and further develop wheelchair services by specific policy, management and service guidelines, which could include a coordinated management approach for wheelchair donations. since sustainability is also dependent on trained personnel, the ongoing training and capacity building of existing service staff should be a key feature, together with integration of the who wstp-b into the training curriculum of service providers. finally, as implementation of the who wheelchair guidelines seems feasible, services in other low-resource settings should also implement and research the impact of the guidelines. acknowledgements the comprehensive mobility support programme and the research reported in this paper were funded by usaid (project number spans 025 cbm/zimbabwe). the authors thank jon pearlman, director, international society of wheelchair professionals, and assistant professor, department of rehab sciences & technology, university of pittsburgh, as well as dr johan borg, division of social medicine and global health, lund university, for peer reviewing and providing highly insightful comments on the manuscript. competing interests j.v.v developed the cmsp proposal and was responsible for implementation and management of the cmsp. d.t. was project manager, and supported and monitored the research. thus, they might have had an interest in positive outcomes. e.s. acted as master trainer for the cmsp and one might argue that she has an interest in seeing trainees implementing an improved service. however, she was not involved in the research itself and could thus not have influenced the results. authors’ contributions s.v. conceptualised and drafted the article, created tables and graphs, and coordinated feedback from co-authors. e.s. gave conceptual input into the research methodology, acted as master trainer for the cmsp, and provided conceptual comments and feedback on the article. t.m. was the principal investigator for the research project. she conceptualised and designed the study, collected and analysed data and wrote the research report. c.n. was a researcher in the project and managed and analysed qualitative data. j.v.v. developed the cmsp proposal and was responsible for implementation and management of the cmsp. d.t. was project manager, and supported and monitored the research. t.m., j.v.v., c.n. and d.t. provided input to various drafts of the article. references bergstrom, a.l. & samuelsson, k., 2006, ‘evaluation of manual 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satisfaction with mobility assistive devices: an important element in the rehabilitation process’, disability and rehabilitation 30(7), 551–558. http://dx.doi.org/10.1080/09638280701355777 toro, m.l., garcia, y., ojeda, a.m., dausey, d.j. & pearlman, j., 2012, ‘quantitative exploratory evaluation of the frequency, causes and consequences of rehabilitation wheelchair breakdowns delivered at a paediatric clinic in mexico’, disability, cbr & inclusive development 23(3), 48–64. http://dx.doi.org/10.5463/dcid.v23i3.167 united nations (un), 2006, convention on the rights of persons with disabilities, viewed 17 january 2011, from http://www.un.org/disabilities/convention/conventionfull.shtml visagie, s., duffield, s. & unger, m., 2015, ‘exploring the impact of wheelchair design on user function in a rural south african setting’, african journal of disability 4(1), art. #171, 8 pages. http://dx.doi.org/10.4102/ajod.v4i1.171 visagie, s., mlambo, t., van der veen, j., nhunzvi, c., tigere, d. & scheffler, e., 2015. ‘is any wheelchair better than no wheelchair? a zimbabwean perspective’, submitted for publication. african journal of disability 4(1), art. #201, pp. 10. http://dx.doi.org/10.4102/ajod.v4i1.201 visagie, s., scheffler, e. & schneider, m., 2013, ‘policy implementation in wheelchair service delivery in a rural south african setting’, african journal of disability 2(1), art. #63, pp. 9. http://dx.doi.org/10.4102/ajod.v2i1.63 world health organization (who), 2008, guidelines on the provision of manual wheelchairs in less resourced settings, world health organization, geneva. footnotes 1. occupational therapists, physiotherapists, orthopaedic technologists, orthotist/prosthetists and rehabilitation technicians. 2. the who wstps are based on evidence and international best practice guidelines and focus on universal skills and standards that are achievable within all service settings. 3. wheelchair technologists and technicians, orthotists/prosthetists and welders. 4. folding rigid frame refers to a wheelchair with a rigid frame design of which some components are removable or can fold, for example, quick-release rear wheels or a fold-down back rest. this allows the wheelchair to be broken down into smaller components for easier transport or storage. in contrast, a non-folding rigid frame has no removable or foldable components and the wheelchair must be transported as a complete unit. abstract introduction methods results discussion conclusions and policy implications acknowledgements references about the author(s) akwasi kumi-kyereme department of population and health, faculty of social sciences, university of cape coast, cape coast, ghana citation kumi-kyereme, a., 2021, ‘sexual and reproductive health services utilisation amongst in-school young people with disabilities in ghana’, african journal of disability 10(0), a671. https://doi.org/10.4102/ajod.v10i0.671 original research sexual and reproductive health services utilisation amongst in-school young people with disabilities in ghana akwasi kumi-kyereme received: 29 july 2019; accepted: 07 jan. 2021; published: 01 mar. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: sexual and reproductive health (srh) of young people including those with disabilities is a major public health concern globally. however, available evidence on their use of sexual and reproductive health services (srhs) is inconsistent. objective: this study investigated utilisation of srhs amongst the in-school young people with disabilities (ypwds) in ghana using the healthcare utilisation model. methods: guided by the cross-sectional study design, a questionnaire was used to obtain data from 2114 blind and deaf pupils or students in the age group 10-24 years, sampled from 15 purposively selected special schools for the deaf and the blind in ghana. results: about seven out of every 10 respondents had ever utilised srhs. the proportion was higher amongst the males (67.8%) compared with the females (62.8%). young persons with disabilities in the coastal (or = 0.03, 95% ci = 0.01–0.22) and middle (or = 0.06, 95% ci = 0.01–0.44) zones were less likely to have ever utilised srhs compared with those in the northern ecological zone. the blind pupils or students were more likely to have ever utilised srhs than the deaf (or = 1.45, 95% ci = 1.26–3.11). conclusions: generally, srhs utilisation amongst the in-school ypwds in ghana is high but significantly associated with some predisposing, need and enabling or disabling factors. this underscores the need for policymakers to consider in-school ypwds as a heterogeneous group in the design and implementation of srhs programmes. the ghana education service in collaboration with the ghana health service should adopt appropriate pragmatic measures and targeted interventions in the special schools to address the srh needs of the pupils or students. keywords: sexual and reproductive health services; young people; disabilities; ghana; utilisation. introduction globally, sexual and reproductive health (srh) of young people has been recognised as an important public health issue (odo et al. 2018). child marriage, unintended pregnancies and sexually transmitted infections (stis), including human immunodeficiency virus (hiv), constitute an enormous burden on the health of young people (world health organization [who] 2018a). the evidence suggests that more than 1 million curable stis are reported each day globally (who 2018b). according to global estimates of the who for 2016, there were approximately 376 million new infections of the four curable stis – chlamydia, gonorrhoea, syphilis and trichomoniasis. from this figure, those aged 20–24 years recorded the highest proportion followed by those within the age group of 15–19 years (who 2018b). trends of hiv suggest that one adolescent in the 15–19 years age group acquires hiv infection in every 2 minutes, and no decline in hiv-attributed death rates has been observed despite a reduction in the death rates in all population groups (fatusi 2016; shaw et al. 2016). in ghana, the overall mean prevalence of hiv infection peaked at 3.6% in 2003 and declined to 1.6% in 2014. for those in the age group of 15–24 years, the mean prevalence was 1.8% in 2014, and 8.0% of female respondents and 9.0% of male respondents reported to have contracted sti in the 12 months before the 2014 ghana demographic and health survey (gdhs) (ghana statistical service, ghana health service, icf macro 2015) notwithstanding the enormous burden of srh-related problems amongst young people (shrivastava, shrivastava & ramasamy 2017), there have been inconsistent findings in their use of sexual and reproductive health services (srhs). generally, low utilisation of healthcare services amongst persons with disabilities (pwd) has been attributed to several impediments, including physical barriers, transport challenges, long waiting times, lack of confidentiality, need for an escort and disability-related stigma (burke et al. 2017). although some of the challenges are common amongst the various disability groups, some are also peculiar to specific types of disability. for example, blind persons are confronted with challenges, such as persons to aid them in the facilities and inaccessible healthcare facilities (badu et al. 2018). with deaf persons, lack of privacy and confidentiality at srh centres, lack of knowledge of healthcare providers on how to communicate and poor interpretation skills of sign language interpreters have been reported as barriers to using srhs (mprah 2013). globally, the srh of young people has been given some attention (aninanya et al. 2015). for instance, in 1994, at the international conference on population and development (icpd), social inclusion, human rights, and the needs and development of young people were brought to limelight (jejeebhoy, zavier & santhya 2013). subsequently, governments, especially those in the developing countries, have adopted various strategies to address the srh needs of young people (mbizvo & zaidi 2010). the government of ghana passed the persons with disability act 715 in 2006 and ratified the convention on the rights of pwd in 2012. these are geared towards improvement in the social, economic and political well-being of pwds (badu et al. 2019). however, according to mprah, anafi and sekyere (2014), some of the srh policies in ghana do not pay any attention to the concerns of pwds, and in a few cases where attention is given, it is either often cursory or focused on the negative. evidence suggests that studies have been conducted on various aspects of srh amongst pwds in ghana over the last decade. recently, some empirical studies have focused on access (including financial) (badu et al. 2015, 2018), barriers to access (badu, agyeibaffour & opoku 2016a), challenges (ganle et al. 2016), perspectives of pwds on attitudes of health service providers (badu, opoku & appiah 2016b), utilisation and satisfaction with health services (abraham, agyei-baffour & yarfi 2018) and other srh-related issues (badu et al. 2019; karimu 2017). a few of the recent studies focused on srhs amongst adolescents and young people in special schools. for instance, obasi et al. (2019) discussed srhs amongst adolescents with disabilities, and kumi-kyereme, seidu and darteh (2020) assessed the challenges young people with disabilities (ypwds) face in accessing srhs. this article contributes to the discourse by investigating srhs utilisation amongst the in-school ypwds. conceptual framework the healthcare utilisation model has been adapted as the conceptual framework for this study (see figure 1). this model was propounded by andersen and newman (1973), but has subsequently been adapted (andersen 1995). the model has been applied in various fields such as sociology, medicine, public health and psychology. there are three main components of the model: predisposing, need, and enabling or disabling factors. the model describes how these factors come to play to influence the utilisation of health services (andersen 2008). figure 1: conceptual framework. according to the model, predisposing factors are the demographic characteristics of individuals, such as age, sex, religion, education and ethnicity (andersen 1995, 2008). the enabling or disabling factors are described as external to the individual, but they influence individuals’ decisions concerning the use of healthcare services. these factors include income or wealth, health insurance, travel time to health facilities, the means of transportation and waiting time (babitsch, gohl & von lengerke 2012). the need factors, according to the model, refer to perceptions of the seriousness of a disease or health condition (andersen & newman 1973; babitsch et al. 2012). these include self-rated health, disability status, functional state and illness symptoms (babitsch et al. 2012). there is evidence that some scholars have critiqued the model. for instance, wilson et al. (2005) were of the view that the model does not pay attention to cultural dimensions and social interactions. another limitation of the model is its emphasis on healthcare utilisation or adopting health outcomes as a dichotomous factor, that is, present or not present. the overemphasis of need at the expense of health beliefs and social structure has also been criticised. however, from andersen’s (2008) view, the model equally emphasises beliefs and social structure because need itself is a social construct. despite these limitations, the model has been adapted to guide this study because of its strengths. for instance, the model considers healthcare utilisation from both the micro(individual) and the macro-(community) level. this offers a better understanding of the demand and supply side opportunities and barriers rather than viewing health services utilisation as only a one-sided phenomenon. in this article, srhs utilisation is the dependent variable (figure 1). the independent variables include the predisposing factors (sex, age, religion, educational level and ecological zone), the need factors (disability type and self-rated health status) and the enabling or disabling factors (health insurance subscription, ever faced a challenge). factors, such as sex (surood & lai 2010), age, religion, ecological zone (babitsch et al. 2012) and educational level (dhingra et al. 2010), have proven to be significant in ascertaining the level of utilisation of healthcare services. health insurance subscription has been shown, in other studies, to be a strong predictor of utilisation of healthcare services (kyilleh, tabong & konlaan 2018). methods study setting and design the data for this study were collected as part of a nationwide research project titled: sexual and reproductive health and leisure needs of ypwd in ghana. using a cross-sectional study design, data were collected from the then 10 regions (now 16 regions) of ghana between 01 november and 22 december 2017. politically, ghana is a unitary state divided into 16 administrative regions and 260 districts. the administrative regions are located in three broad ecological zones, namely, the coastal, the middle (forest belt) and the northern (savannah). the results from the most recent population and housing census conducted in ghana show that the total population was 24 658 823 with a sex ratio of 95.2 men per 100 women. the population in the age group 10–24 years constituted 32.0% (7 849 520) of the total population. persons with disabilities accounted for 3.0% (737 743) of the total population (350 096 men and 387 647 women) and 2.0% of the population were young people. the main religious groups in ghana include christians (67%), muslims (17%) and traditionalists (9%). about 53.0% of the population aged 15 years and older were literate in either english or a local language, and 34.0% of the population were literate in both (ghana statistical service 2013). target population and sampling procedures there were 35 public and private special schools in ghana when the data were collected in 2017. the special schools are classified as school for the deaf, school for the blind and school for the intellectually disabled. however, some of the schools are for both the blind and the deaf. this research study targeted only the schools for the blind and the deaf. all the 16 schools for the blind, and the deaf, comprising 14 schools for the deaf (including one senior high school [shs]) and two schools for the blind were purposively selected but the authorities in one of the schools declined to participate in the study. this study targeted all the pupils and the students in the 15 special schools for the blind and the deaf who consented to participate in the study. the inclusion criteria for participation in the study included being a pupil or student, aged 10–24 years in the special schools for the blind and the deaf. however, pupils or students who had multiple disabilities, that is, both deaf and blind were excluded from the study. those who were eligible in the sampled schools at the time of the data collection and consented to participate were included in the study. there were a total of 4180 pupils or students in the 15 sampled special schools (table 1). in each of the sampled schools, a screener was used to select pupils or students who met the eligibility criteria. out of the total number of pupils or students screened, 2840 were eligible but 2114 (74.4%) of them consented to participate in the study. the number of male pupils or students who participated in the study was more (1163;55.0%) than the females (951;45.0%). the majority of the study participants (54.8%) were sampled from the special schools located in the middle ecological zone. table 1: distribution of study participants by sampled special schools. method of data collection the information present in the consent form was shared with all those who were eligible in a classroom. pupils or students who were not willing to take part in the study were allowed to leave. questionnaires (with a braille version for the blind) were administered to the blind and deaf pupils or students who had consented to participate in the study in different classrooms. in the schools with blind and deaf pupils or students, the questionnaires were administered to the blind and the deaf students in different classrooms. the participants were given time to respond to each question after it had been explained before the next question. the questionnaire that was adapted from an illustrative questionnaire for interview surveys was pre-tested in a special inclusive school in cape coast (www.who.int/reproductivehealth/topics/adolescence/questionnaire.pdf). the sections on the socio-demographic characteristics of the respondents and srhs utilisation were used for this study. three field assistants were engaged and trained before the pre-testing of the questionnaire and the actual data collection exercise. the selection of the field assistants was based on their speciality in special education and their knowledge of srh-related issues. one of them was a certified sign language interpreter, and two were master of philosophy students from the departments of population and health and special education, university of cape coast. data analysis the administered questionnaires were checked for completeness and entered into statistical product and service solutions (spss, chicago, il, usa) version 23 software and subsequently exported to stata (stata corporation, college station, tx, usa) version 14.2 for analyses. the study employed both descriptive and inferential statistics in the analysis. three sequential logistic regression models were constructed based on the categorisation of the independent variables into predisposing factors, need, and enabling or disabling factors after the descriptive analysis (see figure 1). the first model analysed the association between the utilisation of srhs and the predisposing factors (age, sex, educational level, religion and ecological zone). the second model assessed how the variables in model i reacted with the introduction of the need for care factors (disability type and self-rated health status). in the third model, the enabling or disabling factors (health insurance subscription, ever faced a challenge) were added to the two models to make it complete. the results were presented as odds ratios (ors), with their corresponding 95% confidence intervals (ci) signifying the level of precision. p-values less than 0.05 were considered to be statistically significant. the adapted conceptual framework for the study informed the choice of the inferential technique. ethical considerations the institutional review board of the university of cape coast granted ethical clearance (uccirb/ext/2017/13) for the study. young people with disabilities who were eligible for the survey were provided with the informed consent form (with a braille version for the visually impaired), which had information on the purpose of the study, confidentiality, anonymity, the right to participate or decline to participate or withdraw from participating at any stage. they were encouraged to ask questions about the study and their participation. the heads of the sampled schools consented for those who were minors (10-17 years) before they assented. written or verbal consent or assent was given by all those who took part in the study before they were enrolled. results socio-demographic characteristics of respondents as shown in table 2, the majority (61.7%) of the total respondents were in the age group 15-19 years (59.8% male and 63.9% female respondents). more than half (56.5%) of the respondents were from junior high school (jhs) (55.2% male and 58.2% female respondents). all the respondents who were in shs were deaf (6.3% male and 7.2% female respondents). the majority (81.3%) of the respondents include christians (80.2% male and 82.7% female respondents) and 55.0% (54.3% male and 55.8% female respondents) resided in the middle ecological zone of ghana. the percentage distribution of the characteristics by type of disability does not vary much from that of the total respondents. for instance, the majority of the deaf and the blind male (59.8%) and female (63.9%) respondents were in the age group 15–19 years. table 2: distribution of socio-demographic characteristics of respondents by sex and type of disability. utilisation of sexual and reproductive health services table 3 shows the proportions of the ypwds, who self-reported to have ever utilised srhs from a healthcare facility. the results reveal that about seven out of every 10 respondents had ever utilised srhs. the proportion was higher amongst the male (67.8%) than amongst the female (62.8%) respondents. also, the proportions varied by the type of disability and the socio-demographic characteristics. for instance, amongst the male respondents aged 15–19 years, 70.3% of the deaf compared with 61.8% of the blind students reported to have ever utilised srhs. similarly, amongst the female respondents who were located in the middle ecological zone, 71.4% and 54.7% of the deaf and the blind students, respectively, had ever utilised srhs. table 3: utilisation of sexual and reproductive health services by disability type and socio-demographic characteristics of respondents. sexual and reproductive health services utilised out of the 1300 pupils or students who reported to have ever utilised srhs, 1180 (90.8%) of them indicated the specific services accessed within the last 6 months preceding the survey (table 4). the main srhs received by both male and female respondents was the treatment for stis (26.8%). however, amongst the male respondents the main srhs received was contraceptives (42.7%) compared with sti treatment (29.0%) amongst the female respondents. the percentage distribution of the srhs received by the deaf and the blind male pupils or students was about the same but varied amongst the female students. for instance, 31.3% of the blind female students received gynaecological services compared with 17.6% of their deaf counterparts. about 17.1% of both male and female students reported to have ever tested for hiv (31.9% male and 15.6% female students). table 4: sexual and reproductive health services utilised by sex and disability type. multivariate analysis three sequential logistic regression models were built based on the conceptual framework employed for the study. as shown in table 5, the pseudo r2 values for the three models were 0.02 (model i), 0.04 (model ii) and 0.11 (model iii), suggesting that the models explain the variances in srhs utilisation amongst ypwds by 2.0%, 4.0% and 11.0%, respectively. sex, educational level and ecological zone were significantly associated with the utilisation of srhs in model i. in model ii, ecological zone, disability type and self-rated health status were statistically significant. ecological zone, disability type, self-rated health status, health insurance subscription and ever faced a challenge were also significantly associated with utilisation of srhs in the complete model (iii) (table 5). table 5: logistic regression analysis of sexual and reproductive health services utilisation. from table 5, ypwds in the coastal (or = 0.03, 95% ci = 0.01–0.25) and middle (or = 0.07, 95% ci = 0.01–0.51) ecological zones were less likely to have ever utilised srhs compared with those in the northern ecological zone. blind pupils or students were about two times more likely to have ever utilised srhs than deaf pupils or students (or = 1.94, 95% ci = 1.17–5.75). those who rated their health status as very bad were more likely to have ever utilised srhs (or = 1.54, 95% ci = 1.12–3.97) compared with those who rated their health status as very good. in addition, ypwds who had not subscribed for health insurance recorded a lower probability of having ever utilised srhs (or = 0.63, 95% ci = 0.32–0.95) compared with those who had subscribed. those who indicated that they never faced a challenge were less likely to use srhs (or = 0.58, 95% ci = 0.30–0.91) compared with those who ever faced a challenge (table 5). discussion whereas ypwds have the same range of srh needs and desires just like anyone else, they may encounter another layer of obstacle in assessing healthcare services as well as asserting their srh rights because of the disabilities they have. this study sought to investigate srhs utilisation amongst in-school young people who are blind and deaf in ghana. the results show high levels of srhs utilisation amongst the respondents studied. on the contrary, it was observed in a study conducted amongst pwds in accra that only one-fifth of them had utilised healthcare facilities (abraham et al. 2018). however, the present findings must be viewed in the context of the unique positioning of the ypwds in this study. they were all in-school young people and could be benefitting from school-based interventions and programmes on srh (jaleta, assefa & amentie 2017). therefore, the high utilisation of srhs could be because of a high level of awareness (ayehu, kassaw & hailu 2016) and good knowledge (obasi et al. 2019) about srh. young people with disabilities in the coastal and middle ecological zones were less likely to use srhs compared with those in the northern zone. there are existing north-south disparities in several development indicators in ghana, which tend to favour the latter generally. owing to this imbalance, several health interventions, including srh, are ongoing in many communities in the northern zone. there is evidence that the government is collaborating with some ngos to address the equity gaps in access to healthcare services, especially in the northern zone. notable amongst the ngos are catholic relief services, west africa aids foundation and alliance for reproductive health rights (hushie 2016). a recent review mapping of srh education programmes in ghana revealed that there were more of such interventions in the northern zone compared with the other parts of the country. some of these interventions specifically targeted vulnerable young people, including those with disabilities (amo-adjei 2020). these contextual dynamics perhaps account for the spatial differences in better srhs utilisation in the northern compared with the middle and coastal zones. the implication of this is that whilst affirmative action in srh programming is important, there must be a deliberate effort not to leave anyone group behind in ways that become counterproductive. the blind pupils or students were more likely to use srhs compared with the deaf students. even though persons with blindness may experience some physical accessibility challenges in seeking healthcare services, they are at an advantage in terms of effective communication with the providers. for the deaf, the space for communication is constricted, given the general lack of sign language experts in many healthcare facilities (mprah 2013; rugoho & maphosa 2017). amongst persons who reason that their needs may not be adequately served, they are not likely to utilise healthcare services and recommend the same to others in their networks or with people they share some major characteristics, even though geographical access may not be an obstacle. as asserted by donabedian (1988), quality of service is an important trigger of re-visit, as well as referral to others. for programming, it is important that service providers are equipped with the skills to deal with all people, including those with one or another form of disability. designating specific facilities to address the peculiar srh needs of ypwds may promote utilisation, especially amongst the deaf as shown in this study. self-rated health has been noted in the literature as a measure that predicts the utilisation of healthcare services (tamayo-fonseca et al. 2015). it was found that those who rated their health status as very bad were more likely to utilise srhs compared with those who rated their health status as very good. probably, the realisation of not being healthy served as a need factor for them to have their health screened, including srh. in order to address the srh needs of ypwds comprehensively, especially those who might rate their health status as good based on their subjective assessment, preventive and promotive aspects of health should be emphasised in programming. young people with disabilities who had subscribed to health insurance recorded a higher probability of srhs utilisation compared with those who had not subscribed. this finding confirms those of other previous studies, which revealed that ownership of health insurance affects utilisation of healthcare services (boachie 2017; kyilleh et al. 2018; van der wielen, channon & falkingham 2018). one of the key barriers to non-utilisation of healthcare services is the direct financial cost of healthcare (dhillon et al. 2012). it is this quest to remove or minimise the effect of cost that many countries have diverse health insurance policies and programmes. ghana introduced the national health insurance scheme (nhis) in 2003. amongst the srhs covered under the nhis are counselling, testing of stis and providing contraceptives. it is probably within this context that those insured used srhs more frequently than the uninsured. sexual and reproductive health services are critical for the well-being of ypwds and for the additional vulnerabilities associated with disabilities. it is imperative that interventions, such as subscription waivers, are granted by the government to this population in order to enable them to access srhs when needed. treatment of stis was the main srhs received by both the male and the female respondents, although the main srhs received amongst the males was contraceptives. probably, it is because ypwds are susceptible and vulnerable to such infections (suzanna et al. 2018). the fact that 13.2% of the young people reported ever testing for hiv might be a reflection of stigma associated with the virus in ghana (ogunbajo et al. 2018). that is, the fear of being stigmatised and victimised when their hiv status is known, young people may be discouraged from undergoing testing services. the extant literature recognises the misconceptions in many cultures, which tend to de-legitimise the sexuality of pwds, especially in young people. they are sometimes not expected to express their sexuality, and therefore, those found to have negative srh outcomes, such as stis and unintended pregnancies, are stigmatised and censured (manoj & suja 2017). strengths and limitations of the study the survey, with a sample size of 2114, was conducted in selected special schools across the country. however, some limitations need to be acknowledged. firstly, the study targeted in-school young people who are deaf or blind, and therefore, not representative of all ypwds in the country. secondly, the reporting of some behaviours could be biased in an attempt to provide culturally and socially desirable responses, despite the assurance of confidentiality and anonymity before the administration of the questionnaires. thirdly, as discussed by mprah (2013), there are various methodological concerns associated with the use of pwds as study participants. for instance, some srh-related concepts do not exist in the sign language (e.g. infection or contract and symptoms). these problems may have resulted in the mistranslation of some concepts and might have made the understanding of some of the survey items difficult for some participants. the research assistants minimised these possible challenges with translation by explaining the concepts with examples before the participants answered the questions. also, there is the possibility that some of the transcriptions of the braille version might be inaccurate, although the transcribed data were double checked with the original answers to the transcribed ones in order to ensure accuracy. despite these limitations, the findings of this study have policy implications on utilisation of srhs amongst the in-school ypwds in ghana. conclusions and policy implications generally, utilisation of srhs amongst the in-school ypwds in ghana is high but significantly associated with some factors. these included predisposing (ecological zone), need for care (type of disability and self-rated health status) and enabling or disabling (health insurance subscription and ever faced a challenge) factors. the main srhs received by ypwds was sti treatment. for both the deaf and the blind male pupils or students, the main srhs received was contraceptives compared with sti treatment amongst their female counterparts. the percentage distributions of the srhs received by the deaf and the blind male students were about the same but varied amongst the female students. the conclusion that srhs utilisation amongst the in-school ypwds is associated with some factors has policy implications. this underscores the need for policymakers to consider in-school ypwds as a heterogeneous group in the design and implementation of srh programmes. the range of srhs received by the ypwds suggests that they have srh needs. the ghana education service in collaboration with the ghana health service should adopt appropriate pragmatic measures and targeted interventions in the special schools to address the srh needs of all the pupils or students. these measures may include alerting pupils or students in the special schools about the range of srhs available in healthcare facilities. furthermore, healthcare providers could organise routine outreach srhs for pupils or students in the special schools. for service providers, people who identify strongly with ypwds may be drawn into frontline roles in the delivery of srhs in the special schools. acknowledgements the author would like to thank abdul-aziz seidu for his contribution towards data collection, data entry and processing. competing interests the author has declared that no competing interest exists. author’s contribution the author declares that he is the sole author for this article. funding information the data for this research study were collected under the project entitled sexual and reproductive health and leisure needs of young people with disabilities in ghana, which was supported by the directorate of research, innovation and consultancy (dric), university of cape coast. data availability statement data sharing is not applicable to this research article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of the author. references abraham, a.y., agyei-baffour, p. & yarfi, c., 2018, ‘utilisation and 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introduction literature review theoretical framework research questions aims of the study data analysis assumptions presentation and discussion of findings conclusion acknowledgements references about the author(s) moleli nthibeli faculty of humanities, wits school of education, university of the witwatersrand, johannesburg, south africa dominic griffiths faculty of humanities, wits school of education, university of the witwatersrand, johannesburg, south africa tanya bekker faculty of humanities, wits school of education, university of the witwatersrand, johannesburg, south africa citation nthibeli, m., griffiths, d. & bekker, t., 2022, ‘teaching learners with autism in the south african inclusive classroom: pedagogic strategies and possibilities’, african journal of disability 11(0), a979. https://doi.org/10.4102/ajod.v11i0.979 project research number: rec-2017-0724 original research teaching learners with autism in the south african inclusive classroom: pedagogic strategies and possibilities moleli nthibeli, dominic griffiths, tanya bekker received: 12 nov. 2021; accepted: 23 apr. 2022; published: 30 june 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: although inclusive education is widely discussed, its implementation has not, arguably, been far-reaching. there remains a lack of specific, targeted approaches towards fully including learners with physical and mental impairments in the educational space. objectives: this study investigated the extent of the inclusion of learners with autism spectrum disorder (asd) in three schools in johannesburg. method: a qualitative interpretivist design was adopted. teachers who work with learners with asd were interviewed using open-ended questions. the sampled data were analysed using thematic analysis, making use of both a priori codes and emergent codes that arose from the open-ended questions. results: the findings reveal numerous pedagogic strategies such as differentiation, scaffolding, use of visual cues, group work and collaboration that can include learners with asd in the classroom space. conclusion: teacher collaboration and teacher training are vital in ensuring that learners with asd are fully included in the classroom space. keywords: inclusive education; inclusive education policy; autism spectrum disorder; inclusive pedagogies; south african inclusive education. introduction since adopting the education white paper 6 on special needs education (ewp6) (department of education 2001), inclusive education in south africa has not made significant developments or seen significant implementation across the country (department of education 2016; kalinnikova magnusson & walton 2021; meiring et al. 2016). even though south african laws and policies favour inclusive education, the reality is that public, mainstream schools rarely show the will or have the capacity to provide equal educational opportunities to all learner citizens. engelbrecht et al. (2016:523) state that mainstream schools particularly lack physical facilities, and that there is limited ‘availability of appropriately educated teachers and effective and adequate teaching and learning resources’. this lowers the chances of fostering inclusive education in south africa in mainstream schools. mainstream schools are the first level of three types of schools described in ewp6 (department of education 2001) for education provisioning in south africa. they are intended to cater for the diversity of learners in their classrooms, including those with low to moderate support needs. however, without proper infrastructure and sufficient teaching skills, providing this support is challenging. the second type of school, full-service schools, are schools that are equipped with additional human and material resources to cater for the needs of learners with impairments and those without impairments who are considered to have moderate to high support needs (department of education 2010a). although government intends to convert more mainstream schools into full-service schools, it is not only the responsibility of full-service schools to implement inclusive education. special education schools are the third level of school placement in the education system for learners identified as having high-level support needs that cannot be accommodated in mainstream or full-service schools. however, despite this tiered schooling, there has been minimal progress in the implementation of inclusive education throughout the education system since the beginning of democracy in south africa in 1994. prompt action is necessary to introduce the changes pledged in legislation and policy (engelbrecht, smit & deventer, 2016). significantly, 2021 was the year in which, across the policy’s 20-year plan, major strides towards inclusive education were supposed to have been made (department of education 2001). however, it is evident and undeniable that the quest for inclusive education has fallen far short of its mark, as evidenced by the most recent official report on this objective, which highlights ‘persistent challenges that retard the progress that is being made in the development of an inclusive education and training system’ (department of education 2016:6). the lack of implementation of inclusive education in south africa is the result of a variety of factors. studies (du plessis 2013; engelbrecht et al. 2016) have shown that one of the reasons for the slow progress is that inclusive education policy differs markedly from the realities in schools. donohue and bornman (2015) point to the ewp6 as an idealistic framework that does not relate meaningfully to the south african context. moreover, the lack of teacher training is another hindrance to the advancement of inclusion. the transformation of an education system is largely dependent on teachers’ skills, as they are in a position of action where they can practically implement change. the salamanca statement (unesco 1994) affirms that a prerequisite of inclusive teaching is suitable training in catering for the needs of learners with disabilities. jansen (2001) explains that teachers prior to 1994 were controlled by a state-enforced, rigid curriculum and were unable to be creative and thorough in their approaches. regrettably, ‘pedagogies forged under the apartheid regime have not been fundamentally transformed’ (griffiths & prozesky 2020:5). south africa has therefore developed a policy without matching it with the practical aspect of teacher training, and this arguably renders the goal for inclusion unattainable, yet the ewp6 itself states that teachers are the prime stakeholders for the implementation of inclusive education. the national policy on inclusive education set an objective to reform teacher training and align it according to inclusive educational principles (department of education 2001), fulfilling the international recommendation for ‘teacher education programmes’ that ‘address the provision of special needs education in inclusive schools’ (unesco 1994:4). donohue and bornman (2014) rightly argue that inclusive education is not possible without appropriately trained and resourced teachers. this is crucial, as the neglect of teachers and the undermining of their role in enabling transformative education has, according to makhalemele and payne-van staden (2018), arguably been the most significant reason for the stagnation of the implementation of inclusive education in south africa. therefore, this article focuses on investigating the inclusive strategies used by teachers for the inclusion of learners, specifically those with disabilities such as autism spectrum disorder (asd), in inclusive settings. autism spectrum disorder research is lacking in south africa, and this study aims to contribute to this under-researched area. indeed, accurate statistics on the prevalence of asd in the country are still unavailable (meiring et al. 2016). autism spectrum disorder is the fastest-growing neurodevelopmental disorder worldwide (akhter et al. 2018), and it is important that it is more fully understood, especially in the context of teaching and learning because with increased prevalence rates, teachers can expect to encounter more learners with asd in their classrooms. the main addition that the study makes is to suggest ways in which some pedagogical strategies can be developed and used to ensure better outcomes for learners with asd in south africa. much of the knowledge of these pedagogical strategies was obtained from teachers, speaking from positions of experiences where their strategies have been tried and tested. literature review history of inclusive education in south africa the political history of south africa has radically transformed over the last 25 years, from a situation that denied the needs and rights of the majority, in favour of a minority, to a democracy that enshrines equal rights to all. however, this equality is still not reflected in the educational landscape. this pertains especially to learners with disabilities who, during and after apartheid, have remained on the fringes of the education system (naicker 2007; ntombela 2011). prior to 1994, aside from separation based on race, learners were also placed into separate schools because of mental and physical impairments and disabilities. this practice has continued in the ‘new’ south africa despite the emergence of official legislation (department of education 1996, 2001) mandating the equalisation of educational opportunities for all children in the country. education white paper 6 (department of education 2001) in particular represents the best legislative effort to date through which the government expresses its vision for inclusive education (du plessis 2013). thus, success in implementing this vision will translate into success in implementing inclusive education in south africa. unfortunately, there has been little meaningful progress, as the latest report on the government’s progress on implementing ewp6 indicates that the majority of learners with disabilities still attend special schools (chambers et al. 2017; department of education 2016). this demonstrates that the ‘paradigm shift’ in policies is not yet reflected in schools or in practice. according to engelbrecht et al. (2016), the essential paradigm shift needed is one from the medical model to the social model of disability. the medical model views disability as an individual and deficit problem, necessitating placing learners with disabilities into separate, special education institutions as they are not considered to be educable alongside their peers (naicker 2005). conversely, the social model explores how society itself creates and reinforces negative perceptions of physical and mental disability and advocates for inclusive educational institutions, where all children are taught together. it is evident that the south african educational landscape is still largely managed according to special education principles, given the placement of most disabled learners into special schools (department of education 2016). however, arguably both models are insufficient in fully conceptualising disability and in developing practical strategies to assist impaired learners. the medical model’s major shortfall is its narrowness in ascribing difficulties associated with disability to the individual, whilst the general social environment remains largely unchanged and marginalisation persists (dixon & verenikina 2007). although the social model primarily seeks to correct societal attitudes towards people with disabilities (oliver 1996), it does not give enough attention to the scientific aspects of impairment, which, if understood, can lead to more informed ways of assisting people in line with the specific needs they have. there is also clearly a need to explore and develop an understanding of inclusive pedagogy, and the need to empower teachers to respond appropriately to a diverse range of learning needs, including those specific to particular impairments, if paradigm and practice shifts are to be supported (walton & bekker 2016). the importance of teachers in the implementation of inclusive education cannot be ignored as ‘classroom educators will be our primary resource for achieving our goal of an inclusive education and training system’ (department of education 2001:18). south african teachers over decades have been mandated to follow policies and guidelines that were devised without their active involvement. for example, whilst the ewp6 development is said to have included the recommendations of teachers (lomofsky & lazarus 2001), subsequent policies were needed to give clearer classroom-based guidance. an attempt by government to meet this need was the introduction of the guidelines for inclusive teaching and learning (department of education 2010b) and the guidelines for full-service schools (department of education 2010a). these guidelines, however, remain generic and descriptive rather than providing practical strategies (du plessis 2013). hence, we argue that it is necessary to explore the strategies and approaches used by teachers themselves, in diverse contexts, to support the inclusion of learners and specifically for this study, those with asd, in order to understand how inclusive education may be better realised. thus, in this study, asd, a neurodevelopmental syndrome that mainly affects people’s social interaction (akhter et al. 2018), is the focus for exploring strategies and approaches used by teachers to support the specific learning needs of these learners. autism spectrum disorder research in south africa autism spectrum disorder rates have risen sharply in recent years, with north america, for example, having 1 in every 165 children diagnosed with autism (lindsay et al. 2014). dyer (2010) posits that the increase in diagnoses is partly because of improved technology and changes in the categorisation of children with asd. according to jick and kaye (2003), more comprehensive studies suggest that hereditary and prenatal conditions of parents are by far the most common causes of asd known to scientists. similarly, ametepee and chitiyo (2009) argue that scientists generally point to genetics as the main source for asd. however, most of this information has western origins, and the prevalence in african countries is largely unknown, as there is very little asd research originating from africa, and the rest of the developing world (ametepee & chitiyo 2009). springer et al. (2013) show that 94% of all articles published on asd have european and north american origins. chambers et al. (2017) argue that south african society in general lacks knowledge of asd, and that there is little specific locally generated knowledge on supporting learning for learners with asd because of the lack of research in the country, which strongly supports the need for studies like the present one to discuss asd in a local-centred context. majoko (2017) argues that the description of characteristics associated with asd is challenging, given the many individual differences amongst learners with asd. we support this argument and acknowledge that not all learners with asd can be described as experiencing identical challenges. however, some common challenges that may be experienced by learners with asd have been described in the literature. such challenges include difficulties in interacting with others, verbal and non-verbal communication challenges, a prevalence of repetitive behaviour and difficulties processing sensory input (majoko 2017; park, chitiyo & choi 2010). difficulties with sensory input and discomfort with changes in routine make navigating a classroom setting difficult for many learners with asd. for learners with asd fortunate enough to attend school, the challenge remains that many teachers struggle to support these learners to achieve reasonable educational outcomes, because of the lack of strategies and resources available for teaching learners with asd (van der linder, erasmus & kritzinger). teachers, especially in mainstream schools, face additional challenges as they are tasked with assisting learners with asd alongside typically developing children, who themselves still have diverse needs. in addition, despite ewp6 (department of education 2001) prioritising changing the attitudes and competencies of teachers towards teaching learners with disabilities, some negative attitudes towards teaching learners with disabilities persist (erasmus, kritzinger & van der linde 2019; nel et al. 2011; swart et al. 2002). research indicates, however, that whilst some negative attitudes still persist, many teachers in south africa support in principle the idea of catering for learners with disabilities in mainstream schools and have favourable attitudes towards inclusive education (donohue & bornman 2015; nel et al. 2011; swart et al. 2002). what concerns teachers however is that they lack the skills to teach increasingly diverse learner populations, most notably those including learners with disorders such as asd who present behavioural challenges (erasmus et al. 2019; tissot & evans 2003). given the lack of resources in developing countries (engelbrecht et al., 2016), cost-effective pedagogical approaches can contribute positively to assisting learners with autism. one technique is the use of visual aids such as placards. this is a relevant option given that most learners with autism learn best when observable materials are included (tissot & evans, 2003). apart from being used as learning materials, visual symbols can also be placed around the school indicating time slots for specific activities, so as to avoid informing learners about tasks suddenly, which can potentially cause anxiety in asd learners (hansen et al., 2014). furthermore, in order to enable teachers to effectively teach in diverse classes, ntombela (2011) suggests that teachers should be given sufficient training before they start their careers and still more in-service training to remain cognisant of emerging challenges. as already highlighted, asd is increasing in prevalence and is commonly assumed to require special education strategies and settings, and hence teachers need to know more about it and be equipped with strategies to teach learners effectively. this study aims to investigate how teachers adapt their teaching strategies for asd in inclusive settings. theoretical framework inclusive pedagogical approach in action in this article, the inclusive pedagogical approach in action (ipaa) framework (spratt & florian, 2015) is used as a theoretical framework. this framework originated from research into teachers’ inclusive responses to learners’ individual differences to enhance participation and avoid exclusion, marginalisation or stigmatisation (florian & black-hawkins 2011). three key principles that are considered essential to enacting inclusive pedagogy in the classroom underpin ipaa. the first of these principles is that difference must be accounted for as an essential aspect of human development in any conceptualisation of learning. inclusive pedagogy does not deny difference in learner learning but advocates responding to differences in a way that does not marginalise learners through teachers’ responses to meeting learner needs, by extending that which is ordinarily available to all (florian 2010b). teachers therefore need to reject deterministic views of ability, and the idea that the presence of some children will impede the progress of other children (florian 2015). deterministic views are associated with the belief that ability is predetermined and fixed and therefore unchangeable. this deterministic view of ability should be replaced by ‘transformability’, which is associated with a belief that all children can progress if provided with appropriate support and conditions. transformability suggests that ability is not static but can be influenced through the actions of teaching and learning (hart & drummond 2014). learners with asd are different in how they comprehend information and communicate, and the ipaa perspective acknowledges that the difference exists. nevertheless, the approach rejects the common hesitancy to teach them in inclusive settings because of assumptions of their lack of ability to learn the same content as non-asd children. inclusive pedagogical approach in action, rather, advocates for pragmatic steps, beginning with teacher beliefs, to ensure that the school environment transforms for all learners to participate meaningfully at school. the second ipaa principle is that teachers must believe that they can teach all learners, including learners with special educational needs, in their classroom. teacher efficacy for inclusive education has been shown to be a key factor in the successful implementation of inclusive education and a key factor in determining teacher attitudes towards learners with special educational needs (forlin, sharma & loreman 2014). a lack of teacher efficacy can have a negative impact on teacher acceptance of, and interaction with, learners with special educational needs. essential to developing teachers’ belief that they are capable of teaching all learners is the view that learning difficulties are not problems located within the learner but rather challenges for the teacher to respond to, thus seeing learning difficulties as a professional challenge. this means that the teacher is committed to the learning of all and views the learning of all as a professional responsibility for which they are accountable. in this way, teachers commit to support the learning of all (florian 2014). this contrasts with the traditional view that assumes that learning difficulties are located within the learners, and that they therefore require something else, from someone else, preferably somewhere else, to address their learning difficulties. moreover, studies have shown that south african teachers understand the importance of teaching all learners in an inclusive environment, but they are not particularly confident in their abilities to teach learners with disabilities (ravet 2018). this shows that a constraint to inclusive practice, when it comes to teachers, is their perception of their abilities, which needs to be supported by enhancing the development of pedagogical strategies that they feel confident drawing upon. the third ipaa principle stresses the importance of continual professional learning and developing new strategies for working with others. this acknowledges that teachers need support in developing their understanding of inclusive pedagogy and how to enact this in the classroom (florian 2010a). one such means of support is teacher collaboration, which is widely accepted as a key to inclusive practice (ainscow 2014). collaboration extends to the collaboration of teachers with parents, guardians and support professionals, as well as to encouraging collaboration amongst and between learners themselves and learners and teachers. this framework is thus relevant to the study’s objective of finding out how teachers, who have succeeded in including learners with asd in their classrooms, were able to do so and to suggest ways of facilitating the exchange of skills with their less-experienced colleagues. there has been some criticism of ipaa primarily regarding the complexity of considering levels of difference that may occur between learners. these levels of difference may present challenges to address individual learner differences within the whole class setting. lindsay et al. (2014) conducted a study of teachers’ practices for including learners with asd in mainstream classrooms and found that whilst teachers embraced inclusive pedagogy, they needed to use specific strategies for learners with asd to manage behaviours. this use of specific strategies, focused on specific learners, could be considered exclusionary. it has been argued that continued development of the ipaa is required in order to address concerns related to avoiding targeted approaches for specific learners whilst still being mindful of incorporating goals of individualised learning plans where these are required. despite this, we argue, however, that the ipaa provides a useful lens through which to consider teachers’ responses to learners with asd, which is the focus of this article. research questions the research questions posed for this study are as follows: what are teachers’ experiences of teaching learners with autism spectrum disorder inclusively in the classroom? what strategies have led to teachers’ success in teaching learners with autism spectrum disorder in the three schools included in the study? aims of the study the main objective of the study was to understand the experiences of teachers teaching learners with asd in the inclusive classroom. the study’s additional aim was to understand the strategies that teachers use to effectively include learners with asd in inclusive educational settings. these strategies are then collated in the article to address engelbrecht et al.’s (2016) concern that ewp6 (department of education 2001) is particularly lacking in specifying practical inclusive strategies, making it a policy with the right intent, but one that lacks direction on the practice of inclusive education in the classroom space. methodology research approach a qualitative interpretivist research methodology was used to give respondents the opportunity to explain their experiences and to give their views on the best educational provision for learners with asd. sampling: the aims of the study required narrow purposive sampling, namely, teachers who have experience in teaching learners with asd. purposive sampling is found to be appropriate for qualitative research because a qualitative study seeks depth of experience and asks carefully selected participants to share their views and motivations. merriam and tisdell (2015:96) add that qualitative researchers seek ‘to discover, understand, and gain insight and therefore must select a sample from which the most can be learned’. a purposive sample was therefore appropriate for collecting data from select sources that are most likely to possess the relevant knowledge (scott & morrison 2006). three schools were selected as research sites for this study. these include one mainstream school, one full-service school and one special school. the following description of the individual schools gives more context to the study and reflects the considerations made in choosing each. firstly, a mainstream secondary school located in a suburb, predominantly housing learners from middle to upper-income households, was selected. although the school uses a mainstream curriculum, it pays a great deal of attention to special needs learners, as reflected in the description on its website. secondly, a full-service school located in a township was chosen because it was transformed from a mainstream to a full-service school for the purpose of implementing inclusive education and is a good example of how far the advancement of inclusion has come. the neighbourhood surrounding this full-service school faces many socio-economic challenges, which compounds the difficulty that comes with teaching learners with impairments. finally, to properly capture the role of special schools in the inclusive education objectives, a special school for learners with asd was also included in the study. the sample size across the three selected schools comprised seven teachers. two teachers from the mainstream school, three teachers from the full-service school and two teachers from the special school were interviewed. initially the intention was to interview at least 10 teachers. however, the 2020 coronavirus disease 2019 (covid-19) pandemic, and strict lockdown measures, made it difficult to secure permission from principals to conduct research in their schools, despite virtual interviews being a possibility that was offered. the selection of teachers for interviews was contingent on them having taught learners with asd in the past, or that they were currently doing so. the actual selection was done by the principals in each school who were requested to specifically identify teachers who have regular interaction with learners with asd to be invited to participate in this study. data collection although the initial sample size was not secured, the objectives of this study were not significantly affected as it is a qualitative, interpretivist study concerned with understanding and exploring teachers’ experiences of, and strategies for, teaching learners with asd. here, meiring et al. (2016:2) assert that ‘the sampling strategy for qualitative research is less concerned with the size of the sample, but more with the relevance of the sample’. relevance, in this case, is determined by whether the interview structure allows for in-depth statements from the respondents, which provides comprehensive feedback that sheds light on their teaching experiences, along with their recommendations for policy development. the kind of interview format used was phenomenological interviews, which allow participants to detail their experiences regarding particular issues (moustakas 1994). this was an appropriate method because the aims of the study were to understand the viewpoints of the participants. open-ended questions were used in the interview to ensure that respondents would not be limited in giving their opinions and experiences. themes, based on the gap in south african research on asd, and on areas in which inclusive education has seen slow progress, were developed into interview questions. these included the lack of knowledge about asd, and concerns of teachers not having proper training to function in an inclusive education environment. teachers were given an opportunity to clarify whether they feel confident in teaching learners with asd, alongside typically developing children. ten questions were asked, and each interview lasted for 30 min to allow for a comprehensive and detailed response from each participant. the following is one of the combination questions included in the interview schedule for teachers in their special school: ‘are you confident in your abilities to attend to the needs of learners with autism? how do you think your confidence and ability levels would be affected if you taught them (asd learners) in a mainstream school?’ this question allows the respondent to discuss their teaching efficacy, the experience they have gained in the special school and whether they think this has an impact on their effectiveness in a mainstream setting. the question allows for a range of possible responses, supporting siedman’s (1998) assertion that open-ended questions enable the researcher to address key themes and also discuss other vital points, as they arise in the interview. an advantage of this approach is that commonalities in the responses of different teachers on themes that were not predetermined were noted, and the issues raised were then considered for further research. in essence, each question in the interviews would either shed light on any of the pre-set themes or allow the teacher to explore other issues and challenges that may not have been included amongst the initial themes. furthermore, open-ended questions meant that some of the themes emerged because of responses from the teachers. this supports siedman’s (1998) claim that open-ended questions can address key themes and also develop additional themes and issues as they arise in the interview. an additional advantage to using open-ended questions is that research subjects are able to bring in new points of consideration that were not part of the initial focus of the study, but that have significance to the participants. nind (2014) asserts that inclusive research should aim to give those who participate in the research enough control for them to determine what will be most meaningful and relevant to discuss. ethical considerations ethical clearance to conduct the study was obtained from the university of the witwatersrand research office human research ethics committee (non-medical) and the gauteng department of education as well as the principals of the schools and the interviewed teachers. furthermore, given the restrictions imposed by the south african government because of the pandemic, all data gathering activities strictly observed covid-19 protocols. participants were also given the option to participate virtually through online platforms if they did not want to be physically present for an interview. data analysis the interview data were processed through thematic analysis, which is defined as ‘the process of analysing data according to commonalities, relationships and differences across a data set’ (gibson & brown 2009:127). this process is also known as ‘coding’, which, according to gibson and brown (2009), involves forming categories that are used to describe general features of data in which different respondents raise similar views. under this method, there are two different domains of codes, which are a priori codes and emergent codes. a priori codes are developed before data collection takes place and anticipate themes the research seeks to explore (scott & morrison 2006). these themes guide the main questions in the interviews, as they are structured to respond directly to the research questions of the study, ensuring that the main objectives are addressed. emergent codes are constructs from the research participants; these emerge from the respondents during the interview, as they respond to the open-ended questions. importantly, they add the subjects’ own voices to the research findings. to show the broadness of the coding process, gibson and brown (2009:133) write that emergent codes ‘emerge through the exploration of data … as distinct interests that were unforeseen in the original formulation of interests’. numerous points emerged during the data collection process of this study. however, only emergent themes that held the most weight in terms of responding to the research questions are discussed in this article. assumptions as reflected in the a priori themes, the following assumptions were made prior to the collection of data. firstly, that all the teachers involved in the study had at least a basic knowledge of ewp6, as it is the national blueprint on teaching learners with disabilities who, according to their schools’ credentials, are part of their learner population. secondly, as the principals had affirmed, in the process of giving permission to conduct research in their schools, that they had learners with asd, it was reasonable to assume that all the teachers interviewed had some experience of teaching learners with asd. to ascertain this, the interview questions for the mainstream schools contained one question asking teachers to state whether they had any learners with asd in any of the classes they taught. in the case of the special school, no such enquiry was necessary, as it is a specialised institution specifically for children with asd. presentation and discussion of findings as stated in the methodology section, data analysis was conducted using thematic analysis, and the results are presented here under specified themes, namely (1) teachers’ understanding of asd and strategies, (2) teachers’ views on the inclusion of learners with asd and curriculum choices and (3) continuous development of teachers. as the data collection involved people, abbreviated pseudonyms were used as follows: each abbreviation signifies the kind of school the teacher was from (mainstream, full-service or special school), and the number in the abbreviation indicates the teacher in that institution: mainstream school teachers: mt1 and mt2 full-service school teachers: fst1, fst2 and fst3 special school teachers: se1 and se2 teachers’ understanding of autism spectrum disorder and strategies teachers understood asd as being a developmental disorder and as a personality type, such as being an introvert. ‘a developmental disorder affecting ability to effectively communicate and socialise.’ (fst3) ‘it is a situation or character of an individual human being who is an introvert, who fails to click well with others.’ (fst1) ‘if you will not talk to them, they will not talk to you … what happens when the child goes down the stairs, he is scared, locomotion, the whole system; it’s sensory disorder.’ (se1) ‘a disorder with problems communicating, structural problems in the brain that doesn’t allow the child to understand figurative language, sarcasm and things like that, and quite often an inability to look someone in the eye.’ (mt1) the explanations of asd provided by participants above included descriptions of particular challenges faced, such as problems communicating, which aligns with similar descriptions in the literature of social interaction and communication challenges (majoko 2017). some complexities that characterise asd were noted in teacher descriptions of asd including sensory sensitivity and experiencing difficulty with understanding figurative language and sarcasm. the teachers’ understanding of the complexities that characterise asd is an important step in implementing appropriate teaching strategies that will support learning for these learners. one of the highlighted strategies was to boost leaners’ strengths, which reflects a particular phenomenon related to asd. this is the observed phenomenon in children with asd that they each have a certain trait, or knowledge area, where they surpass the levels shown by most of their agemates. the reason for this advantage, according to timmons, brietenbach and macisaac (2006), is caused by their compulsive interest in certain forms of knowledge, skills or objects. in recognition of this, mt1 gives a fitting teaching strategy: ‘play to their strengths because you will find that quite often they have strengths that other learners do not have, and in a groupwork situation they become quite valuable.’ this strategy properly exemplifies the values of inclusion, as it enables the peers of learners with asd to not only see but also benefit from the skills of those with asd. an appropriate situation on which to embrace the strengths of asd learners is groupwork: ‘groupwork strategies also produce acceptance, excellency and understanding amongst learners at large.’ (fst3) acceptance is essential for inclusion, and the acknowledgement of each other’s strengths helps learners to function well collectively; therefore, groupwork as a strategy is vital and needs to be done with all the differences in the learner population in mind. differentiated instruction is another strategy that teachers use to ensure that the learning of all pupils runs smoothly, and that all have equitable opportunities to learn. this pedagogy is described by tomlinson (2005:263) as ‘a philosophy of teaching purporting that students learn best when their teachers effectively address variance in students’ readiness levels, interests, and learning profile preferences’: ‘… [y]ou cannot dwell on one pedagogical strategy, it depends on the topic of a day, differentiation helps a lot.’ (fst1) according to algozzine and anderson (2007:50), the priority ‘to the teacher who differentiates is providing a learning environment and opportunities that exclude no child’. importantly, inclusive education is not merely a philosophy that seeks to cater for the needs of learners with impairments or those that are marginalised in any way, but one that serves all learners. göransson and nilholm (2014:207) define the term ‘inclusive education’ as the ‘creation of communities’ and differentiated instruction, through its principle of ensuring that the learning preferences of all learners are considered, which leads to the classroom becoming a community in which all members are equal in opportunities to learn. the participant quote above (fst1) also points to the flexibility of pedagogical approach enabled when using differentiation in the classroom and the multiple ways of being responsive that this opens up for pedagogical choices (walton & bekker 2016). another element to differentiated instruction noted in the interviews was to involve learners in the planning of the lesson and to allow them to choose their preferred method of learning. this is also important in activities that are not confined to the classroom as demonstrated in the following example: ‘i also teach loe, which is like pe… the autistic kids are not necessarily team players, and if you were to force them to be there, it would be a challenge. they would tend to shy away and, you would be like that’s fine, do these exercises because you do need to get some exercise, but if you don’t want to play soccer, that’s fine.’ (mt2) this strategy is effective in that allowing the learner with asd a choice of activity does not bring about a different result from the one that the teacher intended, but through different means that are comfortable to each learner, the desired aim of getting exercise can be met. to involve learners in the planning and development of the lesson, scaffolding is seen to be a useful strategy as well: ‘the first thing is you need to scaffold the learning because of the inattention… they also want to know exactly what’s going to happen in this lesson… you need to explain the reason why this specific task and this specific lesson is important.’ (mt1) scaffolding, and other forms of making learners aware about what to expect in their lessons, is vital as it is done with the awareness that they can be anxious when abrupt changes are brought into their environments (hansen et al. 2014). along with these methods, there are pedagogical strategies that are based on the general challenge of learners with asd to understand messages that others might regard as simple. palko and frawley (2009) assert that the majority of learners with asd are visual learners, meaning that they understand communication better when it is presented to them in the form of visible depictions. research has shown that most learners generally (with or without asd) benefit from the use of visual aids (tissot & evans 2000). this means that the use of visual cues and teaching aids not only benefits learners with asd but also presents advantages to typically developing children. the following extract from the interviews supports this view: ‘this is something that we try to do as staff consistently, and it’s to have a single hand gesture to indicate to the young person that he or she must have a breath now and let the others answer as well.’ (mt1) because of their compulsive obsession on phenomena that interests them, learners with autism may talk for a long time and not let others talk. because of this behaviour, ntombela (2011) suggests that many teachers find learners with asd challenging as their behaviour may interfere with the learning of others. however, as seen in the example above using hand gestures as a visual cue, the behaviour can be regulated to maintain order in the lesson. teachers’ views on the inclusion of learners with autism spectrum disorder many studies have shown that there is generally a positive stance amongst teachers towards inclusive education, with many supporting the placement of learners with disabilities into mainstream schools. however, these studies tend to be general, without any specific impairment being highlighted. this applies especially to those conducted in south africa (see dalton, mckenzie & kahonde, 2012; donohue & bornman 2014; engelbrecht, nel & tlale, 2014; nel, tlale, engelbrecht & nel, 2016; ntombela 2011; swart et al. 2002). given this, it is important to understand from teachers themselves what placement they prefer for learners with specific challenges in the inclusive classroom to establish the teachers’ levels of readiness to assist such learners. teachers were therefore asked if they specifically support the inclusion of learners with asd into mainstream schools to establish whether this type of impairment has a bearing on teachers’ attitudes towards inclusion. nel et al. (2011:77) argue that the attitude of a professional has an impact on their ability to produce desired results and adds that attitudes are ‘based upon previous experiences’. learners with asd should not only be placed in mainstream schools because it aids them in societal integration. rather, schools need to undergo the necessary reforms before they practise inclusion. the most crucial transformation efforts will be those focused on changing the attitudes of those who are likely to interact with children with asd. this was found to be the case in the mainstream school, as revealed by the participants from that school. mainstream school teacher 2 attested both to the value of inclusion of learners with asd and the difficulty that comes with it: ‘i definitely think that there are advantages. however, there needs to be a sort of protected environment.’ (mt2) this speaks about the adaptation of the social environment by changing the attitudes of other learners and teachers, thus removing prejudices about learners with impairments (unesco, 1994). despite being in a mainstream school and having successfully taught learners with asd in that environment, mt2 went on to express a personal preference that is not necessarily supportive of inclusion: ‘i think you’d have greater success in putting an autistic child in a special school.’ (mt2) the teacher supported these remarks by pointing out the practical challenges of placement in most south african mainstream schools, which shows that the preference of special education is not a reflection on inclusive education being unrealistic, but that the south african context makes it so: ‘i think the reason for that is, i think when you go to really big mainstream schools, you’re looking at 1500 [number of learners in a school], you’re looking at 40–45 or more in a class. i think there is no teacher, amazing as they may be who’s going to help that child.’ (mt2) the situation of overpopulation is indeed dire in many schools in south africa, most notably in the most densely populated province of gauteng. it is conceivable that many learners with asd who are in school are not necessarily placed in special schools because their parents do not prefer mainstream education, but because the state of many mainstream schools in south african is not conducive for the education of their children. the issue of overcrowding was also pointed out by one of the full-service school (fst1) educators as a constraint on learning for children with asd: ‘[i]t is very difficult to come up with the positive results because of overcrowding….’ (fst1) the situation of large class size presents a challenge because it makes it difficult to assist learners individually, according to their needs. despite the challenge of overcrowding, fst1 still insisted that the full-service school is the ideal environment for learners with asd to learn in: ‘i think it is best to teach autistic learners together with mainstream learners because multi-learning will prevail for autistic learners. groupwork strategies also produce acceptance, excellency and understanding amongst learners at large.’ (fst1) not only does this response show positivity towards inclusion, but it also shows concern for typically developing learners. inclusive teaching is based primarily on this principle of conducting lessons in ways that benefit all learners, while at the same time avoiding their exclusion in the process of trying to include them (messiou 2006, 2012). of the three schools involved in the study, those from the private school showed a higher understanding and experience of this principle. mainstream school teacher 1 relates an exemplary success story: ‘we had a young person that came here at an advanced age already, and we had to physically get him from the dark corners of the buildings every now and then… it took a year and a half for him to start talking, and then we couldn’t have him quiet, and then by the end of matric year he stood up and made a little speech in front of the whole school.’ (mt1) the learner made significant improvements in communication, a social skill that is difficult for people with asd to attain. an important aspect in the narrative above is that the teacher does not attribute the success to personal effort but to the work of the collective staff, as indicated by the repeated use of the word ‘we’. this is how inclusive education can be exemplified; it begins with the belief that any child can learn despite being impaired in some way. the salamanca statement and the efforts of inclusion that stemmed from it are anchored on this premise that ‘every child has unique characteristics, interests and abilities and learning needs’ (unesco 1994:6), and that they have a right to education that caters to their unique needs. this kind of education requires the collaborative action of all stakeholders, as demonstrated in the above example. when all teachers in a school work together, along with other non-teaching staff, children with asd that would otherwise be seen as incapable of participating meaningfully can achieve satisfactory results (causton-theoharis et al. 2011). with regard to whether learners with asd should be taught a subject-specific curriculum or a skills-based curriculum, the answer is that for promoting inclusive education a flexible curriculum that covers both bases is needed. the need for a flexible curriculum to aid in the placement of learners with disabilities into mainstream schools was already proposed in 1994, as part of the united nations standard rules for the equalisation of opportunities for persons with disabilities (united nations disabled persons unit 1994). if implemented across the country, this principle will set a different course for educators in mainstream schools; shifting them from the medical model mindset of finding a curriculum that learners with autism can fit into to changing existing curriculum practices to complement the different learners’ personalities and needs. amongst the issues raised by the participants is the choice of what kind of curriculum is appropriate for learners with asd. the sector in which a child is educated has particular curriculum mandates that teachers follow, and this has a bearing on the results that can be attained in teaching learners with autism. in reality, one of the reasons that motivated the teachers’ choice of curriculum is the curriculum, which is taught in a school. as highlighted earlier, social awkwardness and slow development of communication skills are common amongst people with asd. as a result, special schools, in particular the one that was involved in this study, work on a curriculum that is centred on the improvement of social skills. the school, as its website states, offers a curriculum that equips learners with ‘life skills required to help them function as independently as possible in activities of daily living’. teachers interviewed at this school stated: ‘they can’t even do abcd, they don’t know because mainstream is mostly academic, and those kids would rather prepare for a skills background.’ (se1) ‘there is a different mainstream curriculum; it’s a challenge to transfer them… i don’t recommend learners with autism to be in mainstream.’ (se2) the first statement does not acknowledge the diversity that characterises the autism spectrum; in the array of syndromes that make up the autism spectrum, there are different levels of severity (tissot & evans 2003). some learners are high functioning, meaning that they have moderate to high intellectual comprehension despite having communication and language difficulties, so the generalisation of all asd learners as incapable of academic success is inaccurate. what needs to be acknowledged and maximised is the potential of each child and a subsequent placement in a school that offers a curriculum suited to their abilities. this shows the attempt of the ewp6 objective to keep special schools in operation in an inclusive education system because on the other end of the spectrum, opposite to high-functioning learners are low-functioning ones who, indeed, are highly unlikely to benefit from a mainstream curriculum. continuous development of teachers the education system of south africa, and by extension the world, is fluid, revealing different challenges at different times. this necessitates the training of teachers who are able to adjust their pedagogic strategies and respond to emerging issues in their field. appropriate teacher training, therefore, does not end at the university or college stage but must be an ongoing process (mcintyre 2009). the importance of this was observed during the interview process, as the teachers highlighted that continuous professional development has boosted their teaching efforts, and that more needs to be done to ensure it. experience was highlighted as a major contributor to teachers’ success in teaching learners with autism, as se1 testifies: ‘it’s an ongoing thing, you learn all the time.’ university education sets an important foundation for teachers, but it is not enough to enable teachers cope with the reality of the teaching environment. experience, as explained by the following responses, is vital for the development of teaching strategies: ‘i taught in private schools, and i taught in public schools, and i taught in public schools in very poor socio-economic environments… i think that has made me realise there is so many differences in each child in each class.’ (mt2) ‘i learned more here than i learned at university… i have worked here for 11 years if i don’t count this year. i did inclusive education in honours but also, i was a high school teacher at grade 8 to matric, but then i went to a special school. i’ve got the experience; the experience helps a lot… it’s an ongoing thing, you learn all the time.’ (se1) ‘teaching is a labour of love and tolerance, as a teacher i must build a good relationship with all my learners. national policies contributed positively on inclusion to my abilities because workshops were organised to implement development to my teaching skills.’ (fst1) these responses not only show the value of experience but also raise the question of how teachers without experience can thrive in an inclusive school with learners with asd. this is where skills sharing becomes vital, and more experienced teachers can assist newly graduated colleagues in adapting to the classroom situation. skills sharing is seldom highlighted in the ewp6 (department of education 2001) but was identified in this study as an effective tool for teaching learners with asd. special school teacher 2, for instance, suggested that teachers should train one another and share information about learners with asd, and how to properly assist them: ‘the other teachers, i will also develop them because at the end they [autistic learners] won’t be in my class only… the whole school will understand.’ (se2) this method has also been successful in the mainstream school, as revealed by mt1, who explained how communication with one asd learner is premeditated by all teaching staff in the school: ‘this is something that we try to do as staff consistently, and it’s to have a single hand gesture to indicate to the young person that he or she must have a breath now and let the others answer as well.’ (mt1) this is a good strategy as it directly addresses one of the challenges associated with asd. learners with asd are sensitive to slight changes in their surroundings, and this includes changes in how other people relate to them (hansen et al. 2014). this collective strategy demonstrates what inclusive education can achieve. here causton-theoharis et al. (2011) assert that children should not have to move to secluded learning spaces to learn but that regular learning changes should undergo the necessary changes to accommodate learners of all needs and backgrounds. this is important because teachers’ success does not only depend on their own change of attitude but also on the extent to which they can change the attitudes of typically developing learners. inclusive education is a whole school approach, and it is only by the collective effort of all members that it can be achieved. conclusion in investigating the experiences of teachers in teaching learners with asd, and the strategies they implemented, it becomes clear that in terms of ipaa principles many examples of good practice were evident. the first principle, that difference must be accounted for as an essential aspect of human development in any conceptualisation of learning, is clearly held by most teacher participants, as there is sensitivity in the descriptions of strategies utilised that indicate attention to including learners with asd in ways that do not marginalise them. the second ipaa principle, which teachers must believe they are capable of teaching all learners, is held somewhat variably by the teacher participants of this study. whilst there was a clear indication that these teachers viewed learning difficulties as a professional challenge and were committed to the learning of all, some still expressed views that learners with asd would be better supported in special school settings. however, there was a clear commitment to the third ipaa principle of collaboration, with multiple examples of collaboration between teachers and in terms of developing strategies for collaboration amongst learners. teachers’ experiences of teaching learners with asd have led to the use of strategies such as group work, differentiation, scaffolding and allowing for the choice of activity. challenges to these strategies include large class sizes and a need for continued professional development. teacher participants also felt that a flexible curriculum would support the ability to successfully enhance the participation of learners with asd, alongside their peers. in conclusion, we argue that the continued sharing of experiences and the ongoing development of collective pedagogic strategies that support the learning of all, including the learning of those with asd, is of greater value than ongoing debates on which educational settings are most appropriate. the focus on placements and arguments for and against special school placements can be counterproductive. supporting this sansosti (2008) argues that focusing on where learners should be educated detracts from considerations on how best to support learning for diverse groups of learners. the end goal for inclusive education is an inclusive society, one in which opportunities are open to all people. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.n. performed the investigation and wrote the original draft. d.g. supervised the project and reviewed and edited the original and final draft. t.b. re-conceptualised aspects of the draft and contributed to the final draft. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data for this study are available from the corresponding author upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references ainscow, m., 2014, struggling for equity in education: the legacy of salamanca, in, inclusive education twenty ears after salamanca, pp. 4156, peter lang, manchester. akhter, s., hussain, a.e., shefa, j., 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research political rights of persons with disability in the zimbabwean media priccilar vengesai received: 15 oct. 2024; accepted: 04 mar. 2025; published: 30 june 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: political rights are crucial for all individuals, especially marginalised groups such as people with disabilities (pwds). the constitution of zimbabwe specifically reserves two seats in the senate for pwds. while this is commendable, the current political climate in zimbabwe does not sufficiently address pwds’ political inclusion, necessitating further action. objectives: this study aimed to firstly describe diverging definitions of disability and highlight that persons with visual and hearing impairments are excluded from the media, thus affecting their political engagement. secondly, to build upon this assertion and elucidate the necessity of enhancing media access for pwds to improve their political engagement. method: a qualitative document-based methodology was utilised. results: people with visual and hearing impairments face considerable barriers in accessing media content during and following electoral processes, effectively constraining their political participation. conclusion: political parties should ensure the inclusion of sign language interpreters during election campaigns and provide their manifestos in braille to enhance media accessibility by people with visual and hearing impairments. additionally, the integration of sign language and braille into educational curricula may foster more effective political engagement through various media channels for pwds. furthermore, training journalists in sign language and braille may improve their communication for people with visual and hearing impairments. contribution: this study reveals significant challenges encountered by pwds in accessing media, which exposes barriers to their political participation. to address these obstacles to accessing media, practical solutions are proposed that may improve the representation of pwds in political roles. keywords: political rights; media; zimbabwe; disability; visual impairment; hearing impairment. introduction in this contemporary era, a democratic society is predicated on the principle that all citizens, including marginalised demographics, should be allowed to engage in the political process. according to maphosa, moyo and moyo (2019:113), this means, ‘equal access to the vote, stand for public office and participate in electoral processes as election officials or observers’. it is widely acknowledged that numerous ordinary citizens in zimbabwe face significant challenges, including resource limitations, political violence, restricted access to media and insufficient educational opportunities during electoral processes. marginalised groups, particularly people with disabilities (pwds), have exacerbated difficulties because of additional environmental, attitudinal and institutional barriers that hinder their ability to fully participate in the political arena (ndhlovu & mudzingwa 2022:270). it is broadly recognised that pwds represent a substantial segment of the global population. scholarly consensus indicates that the pwds’ community represents approximately 15% – 16% of the world’s populace, amounting to over one billion people (kołłątaj et al. 2023:595; department of public service, labour and social welfare 2021:19; pillay, saruchera & chivandire 2023:21). studies further indicate that over 80% of pwds reside in developing nations, with women comprising more than half of this demography (maphosa, moyo & moyo 2019:113; department of public service, labour and social welfare 2021:21; pillay et al. 2023:21). the available survey data estimate that pwds constitute 7% of the zimbabwean population (unicef zimbabwe, n.d.). people with disabilities are, therefore, part of zimbabwe’s diverse population and have an equal right to participate actively in the politics of the day with the rest of the society (pan & yaris 2023:147). despite constituting a significant proportion of the population, the political representation of pwds remains disproportionately low (zimbabwe electoral commission 2020:19; zimbabwe election support network 2018:55; zimbabwe situation 2015). in the 2018 zimbabwean harmonised election, out of 23 presidential candidates, only one candidate, elton mangoma, had declared a disability (zimbabwe election support network 2018:55; zimbabwe situation 2015). in the 2023 elections, among the 11 candidates vying for the presidency, there was no representative from pwds (herald 2023a). in contrast to the increased representation of previously marginalised groups, such as women in political institutions like parliaments and cabinets, pwds remain notably absent from the political sphere (maphosa, moyo & moyo 2019:117). the current state of zimbabwean politics, therefore, highlights a significant imbalance in political representation, with a lack of proportional participation from pwds. this status quo contradicts the human rights model of disability, which mandates equal access to human rights, for pwds, as enjoyed by the broader society (sedova 2024:2). numerous scholars focusing on the african perspective (oluchina 2015) and the zimbabwean context (dziva, shoko & zvobgo 2018; maphosa, moyo & moyo 2019; mtetwa 2016; peta & moyo 2019) have established that the political participation of pwds is a fundamental right that must be upheld. this article builds upon this assertion and elucidates the necessity of enhancing media access for pwds to improve their political engagement. it begins by offering a comprehensive understanding of disability, specifically highlighting that people with visual and hearing impairments represent the most marginalised groups within the media landscape. it then discusses the relationship between access to media and political participation. access to media by pwds is addressed in the context of identified sources of media in zimbabwe. this study also provides recommendations to enhance media access for pwds. disability concept in context scholars and several legal frameworks have suggested varying definitions of disability. maphosa, moyo and moyo (2019:115) pointed out that ‘there is no universally agreed definition of disability’. peta and moyo (2019:86) concur with this view as they note that defining disability is very complex because there is no globally accepted definition. furthermore, deciding on a precise definition of disability has proven to be futile because disability is intricate, multi-faceted, controversial and dynamic (kołłątaj et al. 2023:595). accordingly, mtetwa (2016:32) suggests that when discussing disability issues, it is initially important to clarify terms, hence the discussion of the meaning of disability in this section. in the constitution of zimbabwe (zimbabwe government 2013) (the constitution), disability has been conceptualised in various ways. section 22(1) of the constitution refers to pwds as ‘persons with physical and mental disabilities’, while section 22(4) employs the term ‘pwds’. the lack of uniformity in the terminological framework within the constitution presents a significant challenge, leading to potentially conflicting interpretations of the nation’s supreme law (mtetwa 2016:32). for example, when interpreting persons with physical and mental disabilities, it excludes sensory disabilities such as visual and hearing disabilities (mtetwa 2016:32). the following definition of disability is found in section 2 of the zimbabwean disabled persons act (zimbabwe government 1992): … a person with a physical, mental or sensory disability, including a visual, hearing or speech functional disability, which gives rise to physical, cultural or social barriers inhibiting him from participating at an equal level with other members of society in activities, undertakings or fields of employment that are open to other members of society. (p. 2) although this definition is more detailed than the one in the constitution, in that it acknowledges social barriers as constituting disabilities, it fails to acknowledge intellectual disabilities. given the fluid nature of definitions of disability and considering ongoing social, political and medical advancements (kołłątaj et al. 2023:595), it is necessary to establish a working definition for this article. to ensure clarity and coherence, this article adopted the definition from the national disability policy (department of public service, labour and social welfare 2021:16), which is similar to the one outlined in the convention on the rights of persons with disabilities (crpd) (united nations 2006). article 1 of the crpd provides that: persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. (p. 4) this definition is broad enough to include all forms of disabilities. however, common disabilities in zimbabwe are physical (31%), visual (24%), multiple (13%), hearing (11%), intellectual (8%) and mental (6%) (department of public service, labour and social welfare 2021:20). despite the diverse range of disabilities present in zimbabwe, access to media for individuals within this population is inconsistent. this disparity in media access is closely aligned with the specific nature of the impairment, as identified by virendrakumar et al. (2017:21). furthermore, the accessibility of different media sources varies, impacting the extent to which pwds can engage with information and communication platforms. in zimbabwe, the media landscape encompasses television, radio, print journalism and social media platforms (zirima 2020:1). because of the primary modalities of media, visual and auditory, people with visual and hearing impairments encounter greater barriers in accessing media sources than other forms of disability. according to naipal and rampersad (2018:1), ‘visual impairment is a condition of reduced visual performance that cannot be remedied by refractive correction (spectacles or contact lenses), surgery or medical methods’. hearing impairment is an inability to hear effectively (world health organization [who] 2024). while people with visual impairments often encounter significant barriers to accessing print media, people with hearing impairments frequently face challenges in engaging with auditory language from media sources (witsken 2011:774). consequently, people with visual and hearing impairments disproportionately experience restricted access to various media sources because of the distinctive challenges associated with these disabilities. human rights model approach the human rights model of disability was applied as the theoretical basis for this article, which necessitates the acknowledgement of the dignity of pwds by ensuring their equal enjoyment of rights at par with the rest of society (sedova 2024:2). the human rights model shifts the focus from regarding pwds as mere recipients of medical or charitable aid to acknowledging them as active agents within their communities (skarstad 2024:25). it regards them as ‘subjects with rights, capable of claiming those rights making decisions based on free consent and sufficient information and becoming active members of society’ (pan & yanis 2023:148). this paradigm shift indicates that pwds possess the same agency as other members of society. the human rights model is predicated on international human rights frameworks that transcend mere procedural democracy, emphasising the necessity of recognising and upholding the rights of pwds (pan & yanis 2023:148). consequently, ensuring access to media and political participation is essential for pwds, as these rights are intrinsic to their dignity and humanity. research methods and design this study utilised a qualitative document-based research method in gathering data. through the university of south africa’s e-resources (online library), several data sources were accessed, which include peer-reviewed journals, electronic books and book chapters. these data sources were accessed from electronic databases, including web science, pro quest and science direct. these data were supplemented through a google search of specific websites, including the zimbabwe electoral commission, united nations, world health organizations, african union, prominent zimbabwean newspapers, zimbabwe broadcasting corporation and veritaszim. these websites gave me access to online international conventions, case laws, zimbabwean legislation and the zimbabwean sources of media. the sources of data were purposively selected. a systematic analysis was employed to examine the data, focusing on the mechanisms through which individuals with disabilities engage with media to facilitate their political participation. the analysis covered the legal framework governing media from international, regional and zimbabwean perspectives. within this context, various media sources were identified in zimbabwe and drew extracts to exemplify how media were utilised for political engagement during past elections and subsequent periods. furthermore, the analysis detailed the identified media sources and highlighted the extent to which people with visual and hearing impairments are marginalised in the media discourse. media and political participation international and regional spectrum the evolution of the perception of pwds was heralded by the crpd (united nations 2006), which zimbabwe formally ratified on 23 september 2013. the crpd’s (united nations 2006) primary aim is to address the physical and social obstacles encountered by pwds in enjoying their rights (de beco 2019:49). the crpd (united nations 2006) reframed the understanding of pwds, shifting the perspective from one of charity to recognising them as holders of participatory human rights. this transition emphasises empowerment, autonomy and the obligation of states to ensure equal opportunities and inclusion in society. this shift transformed ‘pwds from passive recipients of aid to fully empowered citizens who enjoy equal rights and protection …’ (virendrakumar et al. 2017:4). these rights include access to media and political participation. in article 21 of the crpd (united nations 2006), it is stated that: state parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present convention. (p. 14) the crpd (united nations 2006) does not only mandate state parties to grant pwds access to information but also requires them to identify and remove barriers that hinder pwds from accessing information and communication (article 9(1)(b)). additionally, article 9(2) (f–g) of the crpd (united nations 2006) advocates for the facilitation of their access to new information and communication technologies and systems. article 4(1)(h) of crpd (united nations 2006) acknowledges the need for assistance for pwds to access information, thus placing an obligation on states to provide them with information mobility aids and any other necessary support and assistance for information access. at its core, the crpd underscores the necessity of accommodating the unique needs of pwds. this approach ensures that they can fully exercise their human rights at par with other members of society (degener & quinn 2002:13). the united nations crpd committee (2018:para 9) states that the human rights model of disability recognises that human rights are ‘interdependent, interrelated, and indivisible’. consequently, while access to media constitutes a fundamental human right in itself, it also facilitates the realisation of the right to political participation. among other rights, the crpd (united nations 2006) establishes the fundamental political rights of persons with disabilities, empowering them to assert their rights and actively participate in crucial decision-making processes. in essence, the crpd (united nations 2006) strives to provide pwds with a voice, agency and the means to effect positive change in their communities and societies (de beco 2019:49). relevant to the political rights of pwds is article 29 of the crpd (united nations 2006), which provides the following: states parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to: ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected, inter alia, by … (p. 21) the essence of article 29 of the crpd (united nations 2006) is that political participation for pwds enables them to voice their views on the governance of their country (oluchina 2015:311). political rights are exercised through various means, including voting and standing for political positions (maphosa, moyo & moyo 2019:117; oluchina 2015:312). accommodative measures in each respective mode of political participation are required to minimise the barriers experienced by pwds in their political participation (de beco 2019:49; oluchina 2015:313). media enhances democracy by providing citizens with essential tools for engaging in political processes (mathe & osunkunke 2019:1). in africa, there is a protocol to the african charter on human and people’s rights on the rights of persons with disabilities in africa (africa disability rights protocol) (african union 2018), which zimbabwe ratified as of may 2024. articles 23 and 24 of the africa disability rights protocol elucidate the rights of pwds to free expression and access to information, and there is a requirement for reasonable accommodation measures that are supposed to be taken, especially for people with hearing and visual disabilities. the african commission on human and people’s rights (african commission) clarified the importance of freedom of expression in political participation in the case of media rights, constitutional rights project v nigeria, (1996) which was adjudicated under the freedom of expression right in article 9 of the african charter on human and people’s rights (achpr) (african union 1981). in this case, the african commission determined that the nigerian government’s prohibition of two magazines constituted an infringement of article 9 of the achpr (african union 1981). the african commission in reaching this decision held that, concerning article 9 media rights agenda and constitutional rights project v nigeria (1996: par 54): this article reflects the fact that freedom of expression is a basic human right, vital to an individual’s personal development, his political consciousness, and participation in the conduct of public affairs in his country. zimbabwe was also found to have violated article 9 of the achpr (african union 1981) by the african commission in the case of zimbabwe lawyers for human rights v. republic of zimbabwe (2004). in this case, the african commission had to decide on the matter of a permanent resident of zimbabwe who had published information on the internet that the state did not appreciate. zimbabwe’s ministry of home affairs deported the permanent resident from the country, and his article was removed from the website. in paragraph 112 of the judgement, the african commission held that: it should be recalled that the victim’s deportation arose from the publication of an article that the respondent state did not appreciate. the respondent state resorted to deportation to silence him, despite a court order that he could stay in the country. admittedly, he is not prevented from expressing himself wherever he was deported to, but vis-à-vis his status in the respondent state, which is a state party to the african charter, his ability to express himself as guaranteed under article 9 was violated. in this respect, the african commission ordered the zimbabwean government to take measures to rectify this violation of, among other articles, article 9 of the achpr (african union 1981). the scope of zimbabwe’s media and political participation zimbabwe has domesticated the right to access information through sections 61 and 62 of the constitution. the dual nature of the media’s right to both access and disseminate information is addressed in section 61 of the constitution. section 62(1) guarantees every citizen, including those with disabilities, the right to access information, particularly regarding public accountability. however, section 62 does not explicitly address how individuals with visual or hearing impairments can exercise this right. nevertheless, when section 62 is interpreted in conjunction with section 6, which recognises sign language as an official language in zimbabwe, it may offer guidance on how people with hearing impairments can access information. the enforcement of media access rights in zimbabwe is done through the zimbabwe media commission (zimbabwe government 2020), in conjunction with provisions outlined in the constitution. section 248 of the constitution outlines the responsibilities of the media commission, which include upholding, promoting, and developing freedom of media, monitoring broadcasting in the public interest and ensuring fairness and diversity of views that broadly represent the zimbabwean society. with the implementation of the constitution, the media commission adopted a more liberal stance regarding the issuance of media licenses, facilitating the emergence of multiple media outlets. according to ndoma and moyo-nyede (2023:8), the current media landscape in zimbabwe encompasses a variety of sources, including print media, radio, television and social media. this is corroborated by zirima (2020) in table 1. table 1: registered and operational media outlets in zimbabwe. radio maintains its status as the primary media source, recognised for its extensive reach and influence (ndoma & moyo-nyede 2023:1). however, recent advancements in communication technologies have elevated social media’s role, not only because of its extensive reach but also owing to its capacity for audience engagement in the journalistic process (mathe & osunkule 2019:1). nonetheless, challenges to media access remain entrenched, particularly relating to censorship within state-owned media (smith 2020:388). as noted by ndoma and moyo-nyede (2023:1), although the constitution enshrines the rights to media freedom and expression, these rights are significantly undermined by the dominance of state-controlled outlets, with the herald newspaper serving as the principal player in print and the zimbabwe broadcasting corporation (zbc) being the primary television provider. furthermore, despite constitutional provisions safeguarding media access for pwds, resource limitations pose substantial barriers to fully realising the right to information access in zimbabwe (dziva et al. 2018:3). access to media is essential for enabling pwds to participate in all stages of the electoral process being, pre-election, during the voting and post-election and in their advocacy for political rights. pre-elections stage in the pre-election stages, media has been used in zimbabwe as a medium where people can campaign or where the electorate is kept informed about the campaign’s progress. political parties can also leverage the media to advance their campaigns. according to hove (2021:1), media can be used to campaign for some political parties, and it can also be used to denounce other political parties. however, equal access to media during campaigns for all interested parties is emphasised by murray (2019:349). as candidates and political parties engage with the electorate, providing manifestos, agendas and post-election plans, the media undoubtedly serves as a crucial campaign platform (the electoral knowledge network 2012). additionally, social media can also be utilised by both candidates and the electorate during election campaigns to foster positive engagement and discourse (bingisai 2024:183). the rise of social media has notably benefitted emerging political entities, such as the citizen’s coalition for change (ccc), particularly during the 2018 elections, facilitating rapid dissemination of their agenda (mutanda 2024:6). in the same manner, zanu pf engaged in social media to disseminate information about its 2018 annual conference agenda (marima 2019:3). however, social media information is not screened, verified or further researched before it is posted. rumours, lies and unsubstantiated information can be posted and may result in misinformation, leading to public confusion (mutanda 2024:9). additionally, the impact of social media in zimbabwe can be hampered by governmental interventions, such as internet shutdowns and surveillance, as experienced from 14 january 2019 to 18 january 2019 (tshabangu & salawu 2024:183). legal disputes may also arise during the pre-election stage, and the public gets to know about these developments through the media. in this regard, the media played a very important role in the pre-election phase during the 2023 elections, most importantly the update of the legal dispute of kasukuwere v mangwana and others (2023) (kasukuwere case). in this case, mr kasukuwere had filed his nomination papers to run for presidency during the 2023 harmonised elections. the first respondent learned from social media about mr kasukuwere’s candidature and approached the court for his removal from the list of candidates because he had not been in the country in the past 18 months as required by the constitution. the kasukuwere case originated from social media discourse, and subsequent updates on its progress were similarly disseminated through media channels. for instance, on 08 july 2023, the herald (2023b) reported on the status of the case following the high court judge’s decision to reserve judgement. this interaction between print media and social media is further exemplified by the inclusion of an excerpt from the twitter account of mr. kasukuwere’s election agent within the same article (herald 2023b). television plays a very significant role in the pre-election stage by broadcasting election campaigns. during the 2023 election campaigns, the zanu pf political party’s election campaigns were televised mostly on the main news bulletin (jogee, matava & zvemunyika 2023). it is unfortunate that in zimbabwe when it comes to the broadcast of election campaigns the ruling party enjoys this platform more than the opposition parties. the opposition political parties would, however, benefit from the international broadcast. for example, the al-jazeera on 17 july 2023 broadcasted the launch of the zimbabwe opposition political party’s election campaign (mutasa 2023). resorting to the use of international media or other sources of media that are not the mainstream media of the country is called alternative media by tshabangu & salawu (2024). alternative media helps to provide access to media on political matters, and they offer an opportunity to the zimbabweans to hear the other side of politics as they are not state censored. voting update the media also plays a crucial role in supporting democracy, especially during election periods, by acting as a watchdog during voting (alfandika & akpojivi 2020:34; the electoral knowledge network 2012). when the electorate is informed about political parties and candidates through the media, they can make informed decisions in choosing their representatives (alfandika & akpojivi 2020:34). additionally, the media can also be instrumental in updating the public about the election results. the newsday published an update on the 2023 election results (masau 2023) as evidenced by the following extract: the early results announced by the zimbabwe electoral commission (zec) highlight the continued dominance of the ruling zanu pf party in rural areas, while the citizens coalition for change (ccc) maintains its stronghold in urban centers. the opposition made significant inroads in matabeleland north, securing victories in lupane east, lupane west and nkayi south, among other constituencies. in bulawayo, the opposition ccc achieved a clean sweep of all the contested seats, according to early results released by zec. post-election stage the public gets to know of the updates on the post-election landscape and reflections through the media. the outcome of the post-election legal dispute of chamisa vs mnangagwa and 24 others (2018) was publicised through the media (hofisi 2019). political participation is an ongoing practice that transcends the boundaries of elections. in the post-election landscape, the media plays a crucial role in holding political officeholders accountable to the electorate, ensuring transparency and fostering informed public discourse about policy decisions and governance practices. in a survey conducted by ndoma and moyo-nyede (2023:1), it was discovered that the necessity for the media in zimbabwe is to function as a watchdog over executive actions, ensuring accountability and the exposure of corrupt practices. the media also warns the public of the twist of events in the political direction of the country. notably, recent media reports have shed light on president mnangagwa’s stated intentions regarding his future beyond the end of his second and final term. the following is an extract from the sunday mail newspaper (maphosa 2025): the push for president mnangagwa to remain in office beyond the end of his term in 2028 is unstoppable as it is the will of the people, zanu pf mashonaland east provincial chairperson cde daniel garwe has said. he made the remarks while addressing multitudes of zanu pf members at the party’s inter-district meeting at hurungwe primary school in murehwa yesterday. the herald corroborated this position in the following extract (madzimure 2025): the push for president mnangagwa to remain in office beyond the end of his term in 2028 is unstoppable as it is the will of the people, zanu pf mashonaland east provincial chairperson cde danniel garwe said. he made the remarks while addressing multitudes of zanu pf members at the party’s inter-district meeting at huringwe primary school in murehwa yesterday. having this kind of information is necessary for political participation as it prepares the public for the events that are to follow. this can also equip the public to respond and post their opinions through other sources of media such as social media. political rights advocacy according to rugoho (2024:84), there is a strong argument for the media to act as a conduit for marginalised communities, playing a pivotal role in alleviating their hardships. the national disability policy (department of public service, labour and social welfare, 2021:67) elaborates on the importance of freedom of expression for pwds and provides that ‘persons with disabilities must be free to express their opinions, to seek, receive and share information and ideas on an equal basis with others and through all forms, of communication of their choice’. the media has the potential to promote the political rights of pwds by influencing societal attitudes, beliefs and misconceptions about them (rugoho 2024:84). access to media by people with disabilities the above section has established that media is key to political participation. what remains to be analysed, which is at the core of the human rights model of disability, is the extent to which people with visual and hearing disabilities can access media so that they can participate fully like other citizens in the politics of the day. the following analysis will evaluate the accessibility of these media sources for people with visual and hearing disabilities. print media print media, encompassing newspapers, magazines and specialised publications such as gazettes and parliamentary records, serves as a vital communication medium for political participation that pwds must access and benefit from. print media offers greater diversity in ownership and content compared to monopolised television broadcasting (electoral knowledge network 2012). newspapers substantially cover political issues and thus contribute significantly to the informational landscape. tables 2 and 3 show coverage of newspapers on political issues (zirima 2020). table 2: percentage space dedicated to different news focus areas for national newspapers. table 3: percentage space dedicated to different news focus areas in weekly newspapers. print media has the advantage of affordability (electoral knowledge network 2012). for example, both the government-owned sunday mail and the privately owned standard are priced at one united states dollar (us$1) and its accessibility to pwds becomes cheap. in the context of zimbabwe, print media is predominantly available in urban areas, severely limiting access for pwds, particularly those in rural regions. this disparity is exacerbated by the fact that individuals without disabilities can more easily navigate urban transport systems, whereas people with visual and hearing disabilities may require assistance. although print media has the potential to improve communication access for people with visual and hearing loss, especially if made available in braille, current offerings are insufficient. no newspapers provide braille versions, indicating a failure to adhere to the human rights model of disability, which requires reasonable accommodation for inclusive access to information for all individuals. radio radio as a means of communication can be useful during election time. radio stations worldwide are important, and according to the electoral knowledge network (2012), in 2002, 95% of the world’s population was covered by at least one radio signal. zimbabwe has five categories of radio stations: national, provincial, commercial, community and campus radios (ncube 2021:66; zimfact 2024). the extensive reach of radio broadcasting can offer opportunities for political engagement. however, the circumstances in zimbabwe present a distinct scenario, where most radio stations are either state-owned or operated by state-affiliated entities (electoral knowledge network 2012). out of 37 radio stations in zimbabwe, only eighty are privately owned commercial radio stations (zimfact 2024). state-owned radios are susceptible to censorship, thereby limiting public access to unrestricted information. additionally, people with hearing impairments often cannot benefit from the information that is broadcast through radio without hearing aids. the inaccessibility of this media consequently infringes upon the media access rights of people with hearing impairments to engage in political participation. this situation is inconsistent with the human rights model of disability. television the zbc maintains a monopoly over terrestrial television in the country (ncube 2021:65; zirima 2020:6). while zbc holds two television licenses, only one station is currently operational. this station has played a significant role in disseminating election updates and informing the public about the political landscape in zimbabwe through its main news bulletin (zbc online news 2023). television serves an essential function in election campaigns. the zbc news incorporates sign language in its main newscasts to accommodate people with hearing disabilities. this practice allows people living with hearing impairments to access media and participate politically by receiving crucial updates related to politics. the zbc’s recognition of the rights of individuals with hearing impairments aligns with the human rights model of disability. however, there exists an inconsistency in the positioning of the sign language interpreter, who is displayed in a small frame at the corner of the screen, while the main newsreader occupies a significantly larger space (jogee, matava & zvemunyika 2023). this arrangement exemplifies the broader societal treatment of people with hearing disabilities. it is important to note that individuals who are blind cannot benefit from the visual component of this media format, resulting in varied effectiveness in reaching pwds based on the specific nature of their impairments. additionally, zbc’s coverage of political news is limited to only 24%, and there is a lack of sign language interpretation for other politically relevant programmes, such as current affairs (zirima 2020:24). in addition to terrestrial programming, satellite television enhances media access with its global reach (electoral knowledge network 2012). the role of satellite television in facilitating balanced political reporting is particularly important in countries like zimbabwe, where media freedom is restricted. for example, detailed reporting on the opposition party’s campaign launch, the ccc, was made accessible to the public through al jazeera broadcasts (mutasa 2023). nevertheless, despite the diversity offered by international media, they fall short of fully embracing the human rights disability model because of the absence of sign language interpreters for people with hearing disabilities. moreover, access to television media, particularly satellite programming, can be prohibitively expensive, thereby limiting the ability of pwds to benefit from such resources. the costs associated with acquiring a suitable television set and necessary licenses may be unattainable, especially for individuals living below the poverty line. the requirements for satellite programming, which include purchasing satellite equipment and maintaining periodic subscriptions, exacerbate these financial challenges. therefore, the realisation of a human rights model of disability necessitates a robust financial commitment dedicated to addressing these issues. social media mutanda (2024:1) defines social media as a ‘group of internet-based applications that allow the creation and exchange of user-created content’. internet-based applications, such as blogs, micro-blogs, facebook, whatsapp and twitter, have become instrumental in political campaigning and election-related communication (electoral knowledge network 2012; mututwa 2019:94). social media in zimbabwe is shaping to be a dominating source of media with some traditional sources of media also posting their content on social media platforms like facebook (star fm 2023; zbc online news 2023). leveraging social media for political campaigns and election communication aligns with the human rights model of disability by facilitating participation from people with visual and hearing impairments. these platforms are inherently interactive, fostering audience engagement and transcending geographical limitations, and help pwds overcome their physical limitations to access information (bingisai 2024:181). they offer time-efficient communication, resist government censorship and are broadly accessible to a wide demographic on mobile devices, while being cost effective (bingisai 2024:181; electoral knowledge network 2012). the role of social media as a key source of information for traditional journalists is increasingly important (electoral knowledge network 2012; herald 2023b). because social media is presented in print, audio and videos, it is therefore interactive to both people with visual and hearing disabilities. people with visual disabilities can benefit from the use of inscribed gadgets and built-in screen readers (baumgartner, rohrbach & schönhagen 2021:79). people with hearing disabilities can also participate in social media through typed messages and videos. social media therefore presents new opportunities for pwds to share their stories and experiences and to participate in the politics of the day. however, the dynamics of social media leave people with hearing disabilities not fully benefiting from social media because sign language interpretations do not back social media videos. people with visual and hearing impairments may also not fully engage with these social media platforms without adequate assistive technology, which may not be affordable to them as they occupy a lower socio-economic status and are more likely to be unemployed (world health organization 2011:10). additionally, challenges such as geographical disparities, economic barriers and inconsistent energy supplies further exacerbate inequitable internet access (electoral knowledge network 2012). ultimately, the core purpose of the human rights disability model remains inadequately met through social media. conclusions and recommendations the importance of political participation for pwds cannot be overstated. numerous national, regional and international legal frameworks affirm the entitlement to political engagement for this demographic. despite the unequivocal existence of this right, pwds remain conspicuously underrepresented in parliamentary and other decision-making roles. the unique challenges and limitations posed by their impairments often create barriers to accessing media on an equal footing with individuals without disabilities. this article has appreciated the link between the right to political participation and access to media. where there is no liberal access to media, people cannot effectively participate in the politics of the day. it is therefore concluded that unless access to media for people with visual and hearing disabilities is improved, their political participation cannot be substantially enhanced. the following recommendations are proposed to foster improved media accessibility and political engagement. legal framework the disabled persons act (zimbabwe government 1992) requires an amendment to integrate explicit provisions addressing the political rights and media access for individuals with disabilities, in alignment with the principles outlined in the crpd. furthermore, the constitution should establish consistent terminology and definitions when referring to pwds across all its provisions to ensure cohesion. improve usage of braille and sign language in the media the print media must endeavour to enhance accessibility by providing braille versions of their newspapers, particularly for political news. in the same vein, sign language should take precedence over verbal narration in news television broadcasts, as it is imperative for the content to be visually accessible to people with hearing disabilities. sign language may also be used in other television programmes, which are politically related. improve access to media technology access to social and online media requires the use of modern devices such as smartphones, laptops and internet connectivity. the zimbabwean government may facilitate such access for pwds by increasing their social assistance grants to enable them to acquire such gadgets. alternatively, the government may provide subsidised gadgets to pwds. liberal radio and television licences in zimbabwe, the absence of private entities in the television media sector is conspicuous, given that the exclusive ownership and control of the two available television licenses lie with state entities. this monopolistic control renders the media susceptible to manipulation to further the government’s agenda. the introduction of private players into this domain is important to foster diversity and expand the scope of political engagement, particularly for pwds. the licensing of private operators for radio and television broadcasting holds the potential to enhance inclusivity, with provisions for broadcasting in sign language and furnishing print materials in braille, thereby augmenting accessibility. introduction of sign language and braille in schools and teaching colleges to facilitate political participation, it is essential to foster interaction between pwds and those without. communication barriers between these groups can hinder political engagement. in zimbabwe, sign languages and braille are predominantly taught in specialised disability schools, limiting the ability of pwds to communicate beyond their immediate community. this presents a significant obstacle for pwds aspiring to hold political office, as they would need to engage with constituents who do not share their communication methods during campaigns, voting and post-election activities. to address this, zimbabwe should consider implementing initiatives to incorporate sign language and braille into mainstream education curricula. this integration would not only benefit pwds but also facilitate the inclusion of those without disabilities into the communication systems used by the disability community. such measures are crucial for fostering broader political participation among pwds. this will also enhance the use of sign language and braille in social media. training and awareness people with disabilities need to acquire media literacy skills through comprehensive training in the use of communication devices and familiarisation with available media gadgets. furthermore, disseminating information through awareness campaigns can play a pivotal role in equipping them with essential media knowledge. training can also be extended to media practitioners on communicating with sign language and braille. this will improve the interaction between journalists and pwds. journalists can resultantly improve the visibility of pwds in the media and enhance their political participation. acknowledgements this article was written during the author’s post-doctoral fellowship at the university of south africa in the department of jurisprudence, college of law under the mentorship of prof maureen mswela. competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. author’s contributions p.v. is the sole author of this research article. ethical considerations ethical clearance to conduct this study was obtained from the university of south africa, college of law (ref: 5363). funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author 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factsheet: what is the state of radio broadcasting in zimbabwe?, viewed 14 october 2024, from https://zimfact.org/factsheet-what-is-the-state-of-radio-broadcasting-in-zimbabwe/. zirima, p., 2020, a media landscape study’ unpacking the ownership in zimbabwe’s creation and delivery of news content: a report. media monitors friedrich-ebert-stifting, pp. 15, viewed 24 january 2020, from https://library.fes.de/pdf-files/bueros/simbabwe/19304.pdf abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) jose m. fernandes independent researcher, ladybrand, south africa monique de milander department of exercise and sport sciences, faculty of health sciences, university of the free state, bloemfontein, south africa elna van der merwe department of exercise and sport sciences, faculty of health sciences, university of the free state, bloemfontein, south africa citation fernandes, j.m., de milander, m. & van der merwe, e., 2024, ‘motor proficiency of learners with moderate to severe intellectual disabilities’, african journal of disability 13(0), a1262. https://doi.org/10.4102/ajod.v13i0.1262 original research motor proficiency of learners with moderate to severe intellectual disabilities jose m. fernandes, monique de milander, elna van der merwe received: 06 june 2023; accepted: 21 nov. 2023; published: 21 feb. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: intellectual disabilities refer to a permanent brain condition that interferes with a learner’s ability to perform basic living tasks, academic tasks and social interactions. by observing the motor proficiency levels of these learners, one can determine the extent of a learner’s possible physical motor proficiency barriers. objective: to determine the motor proficiency levels of learners with moderate to severe intellectual disabilities using the bruininks–oseretsky test of motor proficiency, second edition (bot-2) brief form. method: this quantitative descriptive study included 46 learners (17 girls and 29 boys) from a mangaung school for learners with special needs between the ages of 15 and 17 years. results: indicated that 31 learners (67.4%) out of 46 learners identified with moderate to severe intellectual disabilities had a well-below average; 11 learners (23.9%) had a below average and only 4 learners (8.7%) had average motor proficiency levels. conclusion: alarmingly, this indicates that the majority of learners have severe motor difficulties that may reduce these learners’ abilities to perform tasks using gross and fine motor skills. reported motor proficiency levels can be used as a guide to direct future motor intervention programmes. contribution: timely interventions are central to improving learners’ motor difficulties. this study focused on providing information regarding the motor proficiency levels of south african learners with id that was not previously explored. this was an attempt to bridge the gap in knowledge pertaining to the use of standardised motor proficiency tests for south african learners with id. keywords: bruininks–oseretsky test of motor proficiency; 2nd edition (bot-2) brief form; intellectual disabilities; motor proficiency; motor skill competence. introduction in the american psychiatric association (apa 2013), the diagnostic and statistical manual of mental disorders, fifth edition (dsm-v) categorises intellectual disabilities (id) as having a reduced mental ability in various skills such as reasoning, problem-solving, planning. furthermore this population struggles to think abstractly, make moral judgements, learn new skills as well as learn from the environment. intellectual disabilities also cause difficulties in intellectual (conceptual) functioning and social and practical adaptive behaviour (ashori, norouzi & jalil-abkenar 2018; schalock et al. 2007). although learners can either be identified with mild id, moderate id, severe id or profound id (apa 2013; barlow et al. 2017; roth et al. 2017), the focus will mainly be on moderate to severe id. learners with moderate id usually possess an intelligence quotient (iq) of between 35–40 and 50–55 (barlow et al. 2017). these learners have adequate skills to communicate and can perform independent skills with additional support; however, they require assistance in social interactions and decision-making (apa 2013; roth et al. 2017). learners with severe id have a lower iq score of between 20–25 and 35–40 (barlow et al. 2017). these learners require extensive support on a daily basis to perform basic self-care skills, constantly need supervision to ensure safety and have rudimentary communication skills (apa 2013; roth et al. 2017). didehdar and kharazinejad (2019) have indicated that the prevalence of id is rising and affects learners all around the world. the prevalence of id is estimated globally, in poor countries and in middle-income countries to be approximately 1.6%, whereas in wealthy countries it is 0.9% (elmasry, aladawy & abd-elhamid 2020). the literature indicates that males are diagnosed with id more often than females, with a male:female ratio of 3:2 (christianson et al. 2002), while other researchers reported a higher ratio of 2.3:1 (elmasry et al. 2020). while the prevalence of id is relatively low and affects only a small portion of the population, it is still important to help learners with id gain a better quality of life and improve their standards of living by improving their motor proficiency levels. motor proficiency refers to the ability to perform a wide range of motor skills with competency, including synchronising both fineand gross motor skills that are essential to perform daily living tasks in order to walk, run, jump, catch, throw, kick and roll (barnett et al. 2011, 2016; lopes, saraiva& rodriques 2018). in a study investigating the influence of intelligence levels on the motor coordination abilities of intellectually disabled learners, findings reported that the higher the degree of id, the greater the level of motor proficiency deficits was (lejcarova 2009). this notation has been evident by several studies (hartman et al. 2010; smits-engelsman & hill 2012; vuijk et al. 2010; westendorp et al. 2011). fine motor skills involve having control over objects using the arms and hands, that is the smaller muscle groups (ashori et al. 2018) and incorporate daily skills such as stringing or threading beads, pegging clothes, holding and griping a pencil and a pen in order to copy, trace, draw, paint and to transfer coins (niechwiej-szwedo, alramis & christian 2017). gross motor skills involve the large muscles groups (upper and lower extremities) to perform movement actions of jumping, walking, climbing, catching, throwing and striking (gallahue & ozmun 2006; goodway, ozmun & gallahue 2021; loprinzi, davis & fu 2015) and being able to use the hands and feet in harmony (ashori et al. 2018). capio, eguia and simons (2015) examined the gross motor proficiency by using the test of gross motor development, second edition (tgmd-2), for 81 learners with id (65 boys and 16 girls) between the ages of 5 and 14 years. these researchers found that boys performed better in manipulation skills (catching and throwing) than girls. however, findings also stated that none of the learners (boys and girls) could obtain the maximum score of the test, which would demonstrate mastery in motor skills (capio et al. 2015). other studies compared the motor proficiency of learners with id among typically developing learners. hartman et al. (2010) conducted a study to examine the motor proficiency skills (locomotor and object control skills) and adaptive functioning in learners with borderline id (n = 61) and mild id (n = 36) compared to typically developing learners (n = 97). the results of the study revealed that learners with borderline id and mild id scored poorer on the tgmd-2 compared to their typically developing peers (hartman et al. 2010). a study conducted by rintala and loovis (2013) examined the motor proficiency skills of 20 learners with mild id and 20 typical developing learners, aged 7–11 years old, using the tgmd-2. the study revealed that learners with mild id scored significantly lower in locomotor skills (running, leaping, jumping and sliding) and object control skills (kicking and overhead throwing) compared to typical developing learners (rintala & loovis 2013). these aforementioned studies suggest that learners with id have reduced motor proficiency levels, which makes participation in recreational and sporting activities less likely. although most of these studies focused on learners with borderline to moderate id, it is evident that learners with more severe levels of id were not well-represented in these studies. researchers further raised the issue that there is a lack of motor proficiency tests that are properly validated for learners in african countries, to screen for possible motor proficiency deficits (smits-engelsman et al. 2022). moreover, to the best of our knowledge, no studies could be found in south africa focusing on the motor proficiency levels of learners with moderate to severe id. additionally, no research had been conducted on the bot-2 brief form. therefore, the purpose of the current study was to examine the motor proficiency levels of learners identified with moderate to severe id (iq 20–55) using the bot-2 brief form. improved motor proficiency levels may lead learners with id in becoming more physically active, reduce sedentary behaviour and allow more successful participation in daily activities. research methods and design study design the study made use a quantitative descriptive study design to collect data pertaining to the motor proficiency levels of learners identified with moderate to severe id. motor proficiency levels were obtained by the primary researcher (a movement specialist) who had received formal training by a qualified kinderkineticist in the testing procedures of the relevant assessment tool, namely the bot-2 brief form. participants participants were recruited from one school for learners with special needs, situated in the mangaung metropolitan municipality, free state, south africa. the process to be admitted to the school was as follows: the free state department of education (doe) referred learners from mainstream schools because of the fact they have been identified with moderate to severe id. intellectual disabilities diagnosis is conducted by a state professional (psychologist employed by the doe) or medical doctor (either private or state-employed). the school then admits learners according to the criteria set by the doe with moderate id, severe id, profound id, low-functioning autism, cerebral palsy and down syndrome. learners had been diagnosed with an iq of ≤ 70 by private/public doctors or the relevant state professional. initially, 120 learners had been included to participate in the study. the schools based their identification on the doe criteria to identify these learners. only learners identified with moderate to severe id were considered for inclusion in this study. furthermore, the following exclusion criteria applied: (1) learners who fell outside the age bracket of 15–17 years or who were not identified with moderate to severe id; (2) learners who had been diagnosed by a medical physician with any related skeletal disorder, neurological dysfunction, cardiovascular problems or physical disabilities and (3) consent by parents or assent by learners had not been provided. a total population of 120 learners met the inclusion criteria and consent forms were sent to these parents/guardians. however, only 46 (response rate of 38.3%) agreed to participate in the study. the final study sample included 29 boys (63%) and 17 girls (37%), with a median age of 16 years and 8 months. the youngest participant was 15 years and 6 months and the oldest 17 years and 6 months. procedure the testing procedure was conducted for a period of 2 weeks during physical education and sport periods to prevent learners from missing any formal academic classes. the school screened learners daily for coronavirus disease 2019 (covid-19) symptoms. thus, if a learner presented any covid-19 symptoms, the school referred these learners to the relevant health authorities. testing was conducted in line with the national required covid-19 regulations, and strict adherence was maintained by the primary researcher and the learners. this preventative measure ensured that learners were not potentially exposed to the covid-19 virus. the primary researcher tested each learner individually in a quiet location and each subtest was laid out according to the guidelines prescribed in the bot-2 brief form manual. the assessment typically took 15–25 min to administer per learner. the primary researcher divided the learners into chronological age groups consisting of 15-, 16and 17-year-olds, respectively. all age groups were tested using the same testing procedure. testing took place in the school hall and upon arrival each learner had to sanitise their hands before starting the test. furthermore, the primary researcher ensured that the learners’ face mask/face shield was worn properly and that all equipments were sanitised after a learner completed the test. the assessment typically took 15–25 min to administer per learner. the testing areas were set up according to the guidelines prescribed in the bot-2 test manual and took approximately 10 min (bruininks & bruininks 2005). additionally, 2 min were required to sanitise the equipment and table. each learner was assigned a unique number for the duration of the study. the primary researcher fetched the respective learner from the classroom and escorted them to the school hall. each bot-2 brief form subtest was comprehensively explained to the learner and visually demonstrated. each learner was allowed a practice round to ensure that an understanding was achieved of what was required of them. once a learner completed the test, the primary researcher escorted the learner back to the classroom and collected the next learner. measuring instrument the bruininks–oseretsky test of motor proficiency, second edition (bot-2), uses motor-driven tasks to evaluate the motor proficiency levels of individuals between the ages of 4 and 21 years of age (bruininks & bruininks 2010; cools et al. 2009; deitz, kartin & kopp 2007). it is a standardised assessment tool that can be used to screen the motor proficiency of learners with mild to moderate motor proficiency problems (bruininks & bruininks 2010). the bot-2 has four administration options, namely the complete form, the short form, selected composites and the selected subtests (bruininks & bruininks 2005). in addition to the above-mentioned options, the brief form has recently been made available and has a separate record form, manual and interpretation norms (bruininks & bruininks 2010). motor proficiency is assessed in four main areas: fine manual control, manual coordination, body coordination and agility and strength. these composites can further be divided into the following eight subtests: (1) fine motor precision, (2) fine motor integration, (3) manual dexterity, (4) upper-limb coordination, (5) bilateral coordination, (6) balance, (7) speed and agility and finally (8) strength (bruininks & bruininks 2005). the bot-2 brief form was used as it takes less time to administer than the complete form. this characteristic is more accommodating to the current study population’s concentration span and abilities. the bot-2 brief form comprises 12 items, where at least one item of each of the mentioned subtests is included (bruininks & bruininks 2010). raw scores are awarded based on execution of each subtest and can then be converted into a single total point score (bruininks & bruininks 2010; gkotzia, venetsanou & kambas 2017). the total point score can be used to calculate standard scores (cools et al. 2009), percentile values and age equivalents. using these scores, descriptive categories can be derived for each subtest (if the complete form is used) and for the total motor proficiency score if the bot-2 brief form/short form is used (bruininks & bruininks 2005). the five descriptive categories include: well-below average, below-average, average, above-average and well-above average. the bot-2 test is a reliable and responsive tool to assess learners with id motor proficiency levels (wuang & su 2009). furthermore, it has inter-rater reliability of r ≥ 0.90, internal consistency of r ≥ 0.80 and the test–retest reliability of r ≥ 0.80 (deitz et al. 2007). the construct validity of the bot-2 test is r = 0.80, while a high correlation (0.80) between the short form and the complete form has also been reported (cools et al. 2009). statistical analysis descriptive statistics, such as frequencies, percentages for categorical data, means and standard deviations and/or medians, percentiles for numerical data were calculated to determine the motor proficiency levels of learners identified with moderate to severe id. the principal researcher used a microsoft excel 2016 spreadsheet to capture data from the bot-2 brief form electronically. the data were analysed by means of sas statistical software. ethical considerations learners were recruited after consent had been obtained from the department of education in the free state, and from the principal of the school, consenting for the research study to be conducted on the school premises. an application for full ethical approval was submitted to the health sciences research ethics committee and ethics consent was received on 07 july 2021. the ethics approval number is ufs-hsd2020/0242/2707. furthermore, parents or legal guardians had to complete an informed consent document to provide permission for their child to partake in the research study. the learners had to complete the assent form. all documents were written in english, as well as sesotho (native language) to ensure that parents or legal guardians and learners could have an option to read in a language that they understood. additionally, the assent forms were designed using picture sentences, so that learners could visually read the assent forms. participation in the study was completely voluntarily; in addition each participant was given a participant number to maintain the confidentiality of data. the study was overseen in agreement with the helsinki declaration as revised in 2013. learners received food that was provided daily as part of the schools’ national nutritional programme and testing commenced only after they had eaten. results in table 1, the descriptive statistics of the total point score, standard score and percentile rank according to the bot-2 brief form results can be observed. table 1: descriptive statistics of the participants’ motor proficiency levels. results in table 1 reflect performance on the lower end of possible total point scores, standard scores and percentile ranks, which could be obtained. minimum values are very low, whereas maximum values reach only average levels. table 2 presents the descriptive category, standard score and percentile for the group according to frequency. table 2: descriptive categories, standard score and percentile rank for the group (n = 46). when interpreting standard score and percentile values, table 2 indicates that the majority of the learners 67.4% (n = 31) were classified as having well-below average motor proficiency abilities. the below average motor proficiency category represented only 23.9% (n = 11) of the learners while a very small percentage of learners 8.7% (n = 4) obtained average motor proficiency. no learner portrayed motor proficiency abilities at the above average or well-above average levels. discussion according to our knowledge, this was the first study to establish the motor proficiency abilities of learners characterised with moderate to severe id, in a special school in the free state province of south africa using the bot-2 brief form. the findings of the current study are in agreement with bruininks & bruininks (2010) who discovered that learners with mild to moderate id had a mean standard score of 26.1. conversely, we did not use the mean standard score to verify the motor proficiency abilities of learners identified with moderate to severe id; instead we used the median standard score and established it to be 26. moreover, it should be noted that the study by bruininks and bruininks (2005) examined only learners with mild to moderate id and did not include any of the severe levels of id, for instance, moderate to severe id. a study led by wuang, ho and su (2013) using the bot-2 test among learners classified with mild id (n = 73) and fewer learners with moderate id (n = 41) in taiwan showed results similar to the current study. the baseline of motor ability of learners identified with mild to moderate id was established. the researchers found that 26.3% of the learners were in category 1 indicating well below average motor proficiency level, 47.4% fell in category 2 representing the below average and 26.3% showed an indication of an average motor proficiency level (wuang et al. 2013). similar results were obtained between the studies, indicating than none of the learners were in category 4 and 5, which is above average and average motor proficiency, which proves mastery of the skills (wuang et al. 2013). a reason that almost half of the participants in the study according to wuang et al. (2013) fell in the below average motor proficiency level may be ascribed to the sample having more participants with moderate id, compared to the current study. additionally, the current study was consistent, as the participants with id struggled to achieve categories 4 and 5, which is the high end of the motor proficiency spectrum. westendorp et al. (2011) conducted research on a dutch sample and indicated that the learners with mild as well as borderline id also have impaired gross motor proficiency abilities; specifically, locomotor and manipulation skills associated with typical developing learners. the findings of the current study were consistent with westendorp et al. (2011). conversely, we investigated the total motor proficiency that incorporated gross and fine motor activities and established that both these skills were impaired in learners identified with moderate to severe id. similar to our research, a korean sample studied by jeoung (2018) also indicated that low motor proficiency levels in all areas of development were observed in learners identified with moderate id. comparable results were also found in another study conducted in the netherlands, indicating that learners categorised with mild id had lower levels of motor proficiency compared to those categorised with borderline id (vuijk et al. 2010). a possible explanation for this occurrence is that learners with id demonstrate deficits in their adaptive functioning (hartman et al. 2010); thus, suitable performance in complex motor proficiency tasks may be difficult to achieve for learners with id (westendorp et al. 2011), especially among those with higher severity levels of id (lejcarova 2009). in south africa, a recent study was conducted by smits-engelsman et al. (2022) and the researcher examined the motor proficiency levels of 6–10 year old typical developing learners. the assessment tool used to measure their abilities was the movement assessment battery for children second edition (mabc-2) and the bot-2 short form. approximately a third of the learners from the study were at risk for motor proficiency deficits while using the mabc-2. furthermore, it is interesting to note that when the bot-2 short forms is used, around a tenth of learners were identified with motor proficiency levels deficits (smit-engelsman et al. 2022). even though the current study focused on id, we found conflicting results, where over two-thirds of the learners had motor proficiency problems. smits-engelsman and hill (2012) explored the relationship between motor proficiency levels and intelligence across various iq levels. these researchers established that motor proficiency levels decrease as iq scores declined or vice versa, indicating that there is a direct connection between intellectual performance and motor proficiency levels (smits-engelsman & hill 2012). consequently, vuijk et al. (2010) proposed that it is necessary for schools of special needs to acknowledge that learners’ motor proficiency levels are not a heterogeneous group and a physical education session should be adapted to cater for the learners’ existing level of motor proficiency. even though some studies have scrutinised the motor proficiency of learners with id, it becomes apparent that more studies are required to gain an all-inclusive understanding of motor proficiency barriers of these learners, especially for learners with more severe levels of id. likewise, the lack of information on the validity of motor proficiency tests for more severe levels of id, most definitely requires urgent consideration as results cannot be accurately compared. this certainly will cause an issue when selecting an intervention approach to correct possible motor proficiency deficits. conclusion to our knowledge, this is the first study in south africa to determine the motor proficiency levels among learners with moderate to severe id using the bot-2 brief form. the current study indicated that more than two-thirds of the learners categorised with moderate to severe id fell in the well-below average motor proficiency category. this suggests that motor proficiency delays are present in most of the learners categorised with moderate to severe id. deficits in motor proficiency levels can have an adverse impact on a learner’s health, academic progression and participation in sporting activities. moreover, research regarding the motor proficiency levels on severe levels of id is limited. hence, insufficient inferences could be made to the results of the current study, as most of the studies had focused on borderline to moderate id. therefore, it is suggested that more information should be obtained for learners with severe levels of id regarding their motor proficiency levels. consequently, the results of this study should be made accessible to ensure that the provincial and national departments of education may review the physical education curriculum and mediate as soon as possible by employing a motor intervention programme in order to assist these learners. limitations the current study made use of only one school in the free state province of south africa; thus, the results cannot be generalised to other south african special schools. it is therefore recommended that a larger sample be used in the free state as well as other parts of the country to further inspect the motor proficiency levels of learners identified with moderate to severe id. the study also made use of only the age category of 15–17 years. thus, it is recommended that research be conducted to determine the motor proficiency levels of younger learners identified with moderate to severe id. acknowledgements this article is partially based on the author’s dissertation of the degree of magister artium (ma) human movement science (sport science) at the department of exercise and sport sciences, university of the free state, south africa, with study leader dr monique de milander and co-study leader dr elna van der merwe, received april 2022, available here: https://scholar.ufs.ac.za/handle/11660/11669. the authors express their appreciation towards the principal and the learners. furthermore, thanks are because of the postgraduate school at the university of the free state for sponsoring a writing retreat. m.n. was the biostatistician involved in the study and provided input with the analysis of data. a.g. has done the critical reading of the article. no external funding was received for the research reported in this manuscript. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.m.f. was the primary researcher reporting the findings on his master’s study and the main author of the article. m.d.m. was the supervisor of the study and contributed to the article by providing guidance and advice regarding the structuring and content of the article. e.v.d.m. was the co-supervisor of the study and guided the writing of the manuscript. the final version of the article was approved by all the authors. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability raw data were generated at the school and are the property of the university of the free state. derived data supporting the findings of this study are available from the corresponding author m.d.m. on request. disclaimer the views and opinions expressed in this article are those of the author(s) and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the author(s) are responsible for this article’s results, findings, and content. references american psychiatric association, 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intelligence across the iq range’, pediatrics 130(4), e950–e956. https://doi.org/10.1542/peds.2011-3712 smits-engelsman, b., verbeque, e., denysschen, m. & coetzee, d., 2022, ‘exploring cultural bias in two different motor competence test batteries when used in african children’, international journal of environmental research and public health 19, 6788–6800. https://doi.org/10.3390/ijerph19116788 vuijk, p.j., hartman, e., scherder, e. & visscher, c., 2010, ‘motor performance of children with mild intellectual disability and borderline intellectual functioning’, journal of intellectual disability research 54(2), 955–965. https://doi.org/10.1111/j.1365-2788.2010.01318.x westendorp, m., houwen, s., hartman, e. & visscher, c., 2011, ‘are gross motor skills and sport participation related in children with intellectual disabilities?’, research in developmental disabilities 32(3), 1147–1153. https://doi.org/10.1016/j.ridd.2011.01.009 wuang, y.-p., ho, g.-s. & su, c.-y., 2013, ‘occupational therapy home program for children with intellectual disabilities: a randomized, controlled trial’, research in developmental disabilities 34(1), 528–537. https://doi.org/10.1016/j.ridd.2012.09.008 wuang, y.-p. & su, c.-y., 2009, ‘reliability and responsiveness of the bruininks-oseretsky test of motor proficiency-second edition in children with intellectual disability’, research in developmental disabilities 30(5), 847–855. https://doi.org/10.1016/j.ridd.2008.12.002 article information author: alexander m. phiri1 affiliation: 1ceo, southern african federation of the disabled (safod), bulawayo, zimbabwe correspondence to: leslie swartz postal address: private bag x1, matieland 7602, south africa how to cite this article: phiri, a.m., 2014, ‘building communities of trust: challenges for disability’, african journal of disability 3(2), art. #77, 3 pages. http://dx.doi.org/10.4102/ ajod.v3i2.77 note: this article is an adaptation of a previous news item on the safod website called ‘research support and development in africa – a view from civil society’. mr alexander mwanza phiri sadly passed away in may 2011. copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. building communities of trust: challenges for disability in this editorial... open access • abstract • the context for this posthumous contribution • questioning research on disability and development • researching as an interdependence entity • owning the african research agenda • challenging european agendas • disability rights and research participation • references abstract top ↑ this article asks questions about power and partnership in disability research in africa. research has been located too much in one type of organisation or another and not sufficiently in the interaction between a range of legitimate stakeholders. across africa and europe, and government and civil society dialogues, the african development research agenda must be owned by africans. fully inclusive national and international research partnerships are crucial, but they must be driven from africa. european constructions of and interventions concerning people with disability have often been inhumane, seeking to eliminate them from society. african cultures have also stigmatised people with disability. i call for a new african-driven research agenda that promotes the human rights of people with disability, and has people with disability not only participating in this research, but directing it. the southern african federation of the disabled (safod) research programme (srp) is breaking new ground in this regard by allowing ‘the researched’ to become ‘the researcher’. the context for this posthumous contribution top ↑ in november 2011, the third african network for evidence-to-action on disability (afrinead) symposium, with the theme ‘building communities of trust’, was held in zimbabwe. this afrinead symposium was hosted by the southern african federation of the disabled (safod). mr alexander mwanza phiri, the ceo of safod, was a critical role player in the preparations for hosting this symposium. he died in may 2011, however. we share this article as his legacy and an attempt to continue the dialogue of building communities of trust. all of the ideas in this article were expressed by mr phiri in his personal capacity and should not necessarily be taken to reflect the views of safod, past or present. this article has been revised and edited to make it suitable for this special issue by prof. mac maclachlan (trinity college dublin) and dr gubela mji (stellenbosch university). questioning research on disability and development top ↑ i want to consider the importance of research and its impact on the policy development agenda in africa. i also, at the outset, want to recognise that this raises some important and perhaps uncomfortable questions. who is and who should be driving the research agenda in africa? there are developed countries and developing countries; and the issue of race, class, tribes, minorities and the majority – who is leading the process? what about government and civil society – are they of any influence in setting the research agenda? do they work together or in separate ways? what about different sectors of civil society, the non-governmental organisation (ngo) sector, the private sector, and institutions of higher learning, et cetera; to what extent do they embrace each other when lobbying for relevant and appropriate laws governing human development? what about people with disability and people without – do we need each other? what caused the rise of disabled people’s organisations (dpos) when they walked out of a rehabilitation international conference in winnipeg in the early 1980s? people without disability may ask: ‘do we need people with disability to do research on disability?’ people with disability may equally ask: ‘do we need people without disability to do research on disability?’ and in all of this, just what is the role of civil society? researching as an interdependence entity top ↑ i can go on and on asking questions, which is, in fact, what most researchers spend their time doing, often writing volumes of text in the process but finding very few, and sometimes no useful, answers to their questions. i am not saying that people, or researchers for that matter, should not ask questions and try to find answers to these questions. researchers need to set questions and indeed work on the solutions; but as they do so, i believe they need to reach out and work together. we need to respect one another’s environment; we need to respect each other’s situation and position. there may be distinctions in terms of who we are, where we live or where we come from; what position we hold in society; whether we are in or outside government; whether we are black or white; have a disability or not – we need to find a way of working together because the essence of life is that every human being is important. each institution is important in its own way; hence the need for all of us to work together in our pursuit of the research agenda. we need to support one another. owning the african research agenda top ↑ unfortunately, the distinction between developed and developing societies, for example, is often that of one group of researchers or academics dominating the other (maclachlan, carr & mcauliffe 2010). i hate racism because it should not have any space in this modern world; but the issue of race is critical in theresearch agenda in africa and there is a need to address this issue. africa faces the greatest challenge of establishing and making use of its own research for effective decision-making in development programmes and policy-making. however, our budgets for research and development are not sufficient and can be augmented by those of our colleagues in developed countries. also, our own governments are not as committed as those in developed countries claim to be to evidence-based actions. we therefore require research staff from developed countries to support the development of the research evidence which is so critical for effective policy development and implementation in our countries. our research budgets in africa should be increased so that we generate our own data to back up our campaigns for meaningful development. we africans have for too long relied on external researchers, on externally generated data and externally driven research agendas that do not effectively address our issues. if we do not own the research how can we address our needs? african people must invest in home-grown research capacity and research solutions that will meet the specific needs of africa. this, however, does not mean that we are saying ‘no’ to international partnerships. yes, we want to work with our international partners, but they should allow us to drive the research agenda. our partnership should be genuine and based on the principle of equality. dr sindiso ngwenya (2009), secretary general of the common market for eastern and southern africa (comesa), maintains that there is a need for africans to collect their own data to tell the african story, and to benchmark themselves against development targets. ngwenya actually warns that if we do not collect our own data we will make plans using the wrong data. i agree with him. we need to promote a kind of research which is useful; research that solves daily problems and makes a positive impact on people’s lives, rather than research that is merely for academic purposes. we should not look only at researchers in universities in developed countries as the traditional research community, but also at the emerging research tools and initiatives in developing countries that are embedded in the rich, strong african culture, as being equally authentic for the work at hand. challenging european agendas top ↑ research on disability stemming from developed countries has developed a range of foci, some of which i am quite unhappy about as a person with a disability. for example, the forced sterilisation that girls with mental disabilities are sometimes subjected to is not an african practice but a european one. another example is the growing practice of encouraging pregnant women to terminate their pregnancies when it is found that the baby they are carrying has a disability (mitchell & snyder 2003). i am of the strong opinion that abortion, which has found its way in many african constitutions, is foreign to africa and should be rejected by our policy makers – more so when it denies innocent children with disability the opportunity to live. abortion, which has its roots in europe, is un-african. recent history tells of the campaign in europe to create and preserve a ‘master race’; a special type of people who needed to have the right eye colour, the correct height and so on. we all know what happened: that scientifically and politically driven campaign resulted in one of the world’s most tragic episodes of mass murder of men, women and children – many of them because of their disability. euthanasia is another campaign that appears to have thinking in common with forced sterilisation and abortion as ‘acceptable’ methods of reducing the population of people with disability. however, euthanasia is widely talked about and even practiced in europe and other developed countries. it has yet to take root in africa – and we have to stop it! one common feature of these anti-life practices is that they are targeting the elimination of people with disability as part of a solution to ‘the problem of’ disability. this is a sad development for both the disability movement and africa which, by the way, also has traditions of discriminating against people with disability through oppressive and stigmatising cultural and tribal beliefs (ingstad & whyte 1995). in many parts of africa people with disability were seen, and in many respects continue to be seen, as an abomination, as sub-standard human beings who are a result of sorcery and witchcraft. disability rights and research participation top ↑ africa still needs to make amends in promoting the rights of people with disability as full citizens who are entitled to all human rights. fortunately, through the rise and work of dpos there are strong indications and cases of communities that are beginning to embrace people with disability as human beings. for example, there are women and couples who refuse to accept prescribed abortion programmes by carrying pregnancies to full term even after being told of the disability of their unborn child, and who celebrate after giving birth to a child with disability. it is therefore critical that researchers who are part of civil society should take a lead in generating the evidence that will be used to craft effective development programmes and policies for supporting the rights of children, women and men with disability. without credible evidence our campaigns for an equitable world that includes both people without and people with disability as full citizens will be meaningless. recognising the important role of researchers, it is now the time to develop the capacity of researchers with disability. this is, in fact, what we are aiming to achieve through a new initiative that we have started with the support of the united kingdom’s department for international development (dfid). the safod research programme (srp) is teaching us that people with disability are the best to tell their own story and to drive their own research agenda. through the srp we have also learnt that collaboration in the research process is important not only for capacity building but also for effective engagement with academia and mainstream researchers. the idea is to not let people with disability continue as passengers on the research train; they must be in the engine room and steer that train. with regard to the srp, the criterion set by the technical advisory board (tab) that each bidder should have a person with disability as part of the research team is not merely to say people with disability should be used as window dressing. instead, we want them to participate fully because they will soon be driving this process. to achieve this, however, we need to ensure that collaborative efforts between organisations in developed and developing countries yield mutual benefits. this must be achieved through genuinely equal (but not necessarily equivalent) partnerships; even though much of africa does not have financial, technical and material resources, africa does have a wealth of talented people, and this resource does and should include people with disability. much more research on disability issues is needed for positive and effective policy development in africa. references top ↑ ingstad, b. & whyte, s.r., 1995, disability and culture, university of california press, los angeles. maclachlan, m., carr, s.c. & mcauliffe, e., 2010, the aid triangle: human dynamics of dominance, justice and identity, zed, london. mitchell, d. & snyder, s., 2003, ‘the eugenic atlantic: race, disability, and the making of an international eugenic science, 1800–1945’, disability & society 18, 843–864. http://dx.doi.org/10.1080/0968759032000127281 ngwenya, s., 2009, ‘remarks to the regional policy dialogue of the food agriculture and natural resources policy analysis network (fanrpan)’, regional policy dialogue and annual general meeting, maputo, mozambique, 31 august – 04 september. abstract introduction background information objectives research method and design ethical considerations findings of the study discussion of findings recommendations conclusion acknowledgements references about the author(s) brian tigere department of social work, university of limpopo, sovenga, south africa jabulani c. makhubele department of social work, university of limpopo, sovenga, south africa citation tigere, b. & makhubele, j.c., 2019, ‘the experiences of parents of children living with disabilities at lehlaba protective workshop in sekhukhune district of limpopo province’, african journal of disability 8(0), a528. https://doi.org/10.4102/ajod.v8i0.528 original research the experiences of parents of children living with disabilities at lehlaba protective workshop in sekhukhune district of limpopo province brian tigere, jabulani c. makhubele received: 23 may 2018; accepted: 20 june 2019; published: 19 sept. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. parents in sekhukhune district, a rural area in limpopo province of south africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal. objectives: this study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at lehlaba protective workshop in sekhukhune district of limpopo province, south africa. method: the study consisted of 14 participants who are parents of children living with disabilities. an interview guide with a set of questions was utilised to gather data. thematic analysis was used to analyse the data and themes that emerged were grouped together. results: themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. the participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional african medicine. the study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. stigmatisation of the parents was also a theme that the study revealed. the parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed. conclusion: parents of children with disabilities are in their own battle in raising their children. there is a lack of support structures available for parents of children living with disabilities. there is a lack of legislation available for protecting and promoting the rights of children with disabilities. the researchers concluded that raising a child with a disability is expensive, time-consuming and straining. keywords: experiences; parents; children; disabilities; attitudes. introduction disability is the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental or some combination of these, and it may be present from birth or may occur during a person’s lifetime (world health organization 2011). as a result, disability can affect not only those who are disabled but also those who are the primary caregivers. raising a child with a disability is a challenge to most parents. in other words, primary caregivers, more especially those in rural settings, require assistance from all stakeholders, be it government or the private sector. the experiences faced by the parents, either negative or positive, have made an impact on the well-being of children living with disabilities. primary caregivers include biological parents of the children or legal parents who include adoptive or foster parents. for most parents, the birth of their first child is a major transition in life that involves the new challenge of caring for an infant, and major changes in lifestyle and sense of identity (gupta 2011:74). the birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the parents or the family (brown, goodman & kupper 2014). with the arrival of each new child in the family, further changes will take place. when a child is diagnosed with a disability, the experience of parenthood is affected, and expectations with regard to the child and the future may have to be revised. like all other children, a disabled child is born into a family and remains a lifelong family member. among all the social institutions, for example the church, the school and the community, family is the most significant and is universally regarded as exerting the most influence on the child’s development as it provides care, love, support, protection, guidance and direction to children (monk & wee 2008:104). the way parents treat a disabled child is a reflection of attitudes they have towards disability. south africa has one of the best policies for children with disabilities, notably being a signatory to the united nations convention on the rights of the child (uncrc) in 1995 and the united nations convention on the rights of persons with disabilities (uncrpd) in 2007. this has however failed to change the lives and living conditions of children with disabilities in south africa in general and limpopo province in particular. in addition, significant knowledge gaps remain with regard to the situation of the parents of children living with disabilities, their families and the underlying causes of their situations. this study explored the experiences of parents of children living with disabilities at lehlaba protective workshop in sekhukhune district of limpopo province. lehlaba protective workshop is a rural community-based centre which provides day care stimulation services and protected work to children and adults with different kinds of disability. this is an important area of research to explore because available literature focuses on children with disabilities rather than their parents or guardians. all the problems faced by the children have an effect on their primary caregivers who are their parents and guardians. therefore, the researchers saw it fit to explore the topic so as to highlight the journey faced by parents in raising their children living with disabilities. background information in this study, the term ‘disability’ means a physical, mental or sensory impairment, whether permanent or temporary, which limits the capacity to perform one or more essential activities of daily life, and this can be caused or aggravated by the economic and social environment (schulze 2010). a parent is the caretaker of a child. physical disability is any impairment that limits the physical function of limbs and loss of motor ability (anastasiou 2013). according to crow (2010:77), the term ‘intellectual disability’ is used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of himself or herself and social skills. mitra, posarac and vick (2011) stated that there is no consensus on a definition and measurement of the controversial and complex phenomenon of disability. different conceptual models have been developed for definitional purposes, including the charity, medical, economic and social models (altman 2001:105). the charity model views persons with disabilities as elements of pity and, therefore, to be helped by welfare approaches. the medical model considers disability as a problem of the individual directly caused by a disease, an injury or some health condition and requiring medical care in the form of treatment and rehabilitation. individuals with any impairment are considered disabled, where ‘impairment’ is used for their condition, irrespective of whether the individuals experience limitations in their activities. the medical model is often opposed to the social model, which views disability purely as a social construct where the problems of the disabled are either caused or exacerbated by the society in which they live (mitra et al. 2011). the social assistance act no. 13 of 2004 of south africa defines a person with a disability as a person who is, owing to a physical or mental disability, unfit to obtain by virtue of any service, employment or profession the means needed to enable him or her to provide for his or her maintenance (government gazette 2004). in general, research of children with disabilities in south africa has been conducted. however, experiences of the parents of children with disabilities in rural areas, especially in limpopo province, have never been well documented. research has however been conducted with parents of children living with disabilities notably in developing countries, such as zimbabwe and india. in most parts of southern africa including zimbabwe, children born with albinism used to be killed immediately after birth. the parents had to endure the pain of watching their children being killed as they did not have power to stop the killings. furthermore, people with disabilities in zimbabwe were marginalised and treated as if they were not capable of functioning on their own. disability was equated with inability. in most parts of africa, including zimbabwe, disability is viewed as either a form of punishment or as a curse by angry ancestral spirits (chimedza & peters 2006:425). in zimbabwe and other african nations, the family has been responsible for taking care of its disabled members. however, pressures from urbanisation and changing patterns of employment leading to urban migration have resulted in the breakdown of the extended family system (chimedza & peters 2006:428). because of more limited family support, children with disabilities have been locked in houses and placed in institutions and are generally seen as burdensome (chimedza & peters 2006). tolerance of people with disabilities has also tended to diminish sharply during periods of economic hardship (choruma 2007). this has left the burden on the parents who have to bear the brunt of looking after the children with disabilities. parents of children with disabilities in india face the challenge of poverty associated with disability. a large number of children with disabilities live in families with income significantly below the poverty level. according to miles (2000:613), ‘while disability causes poverty, it is also possible that in a country like india, poverty causes disability’. the combination of poverty and disability results in a condition of simultaneous deprivation. the attitudes of the non-disabled are proving to be a major barrier in the social integration of children with disabilities. the more severe and visible the deformity is, the greater is the fear of contagion, and hence the attitudes of aversion and segregation towards the crippled (miles 2000:606). such attitudes reinforced by religious institutions may militate against any attempts to include students with disabilities into regular schools. hindus (who constitute 85% of the total population in india) believe that disability is a consequence of misdeeds performed in the previous life. many hindu religious institutions and temple trusts, therefore, do not think a part of their duty is to help children with disabilities because they consider disability to be the result of a person’s misdeeds in his or her previous life. parents of the children are left to suffer emotionally to this hostile society (hastings & beck 2004). in india, disability is still viewed in terms of a ‘tragedy’ with a ‘better dead than disabled’ approach, the idea being that it is not possible for disabled people to be happy or enjoy a good quality of life (padencheri & russell 2004:134). cultural beliefs about disability play an important role in determining the way in which the family perceives disability and the kind of measures it takes for prevention, treatment and rehabilitation. in rural india, parental expectations for their disabled child are mostly negative and unrealistic (gupta & singhal 2014:28). objectives the first objective of this study was to describe and explore the experiences faced by parents of children with disabilities at lehlaba protective workshop in sekhukhune district of limpopo province, south africa. the second objective was to identify resources available for parents of children with disabilities. research method and design to achieve the objectives of the research, the researchers employed a qualitative methodology. according to babbie, mouton and strydom (2011), social research can be conducted for explanatory, descriptive or exploratory purposes. explanatory studies aim to provide causal explanation of phenomena. an exploratory approach was appropriate for this research because the researchers’ purpose was to explore the experiences of parents of children living with disabilities at lehlaba protective workshop. as most studies have focused on children living with disabilities as subjects, there is little information available about parents with regard to their experiences in taking care of their children, especially in a rural setting. purposive sampling was used to collect data from 14 participants. out of these, nine were women and five were men. twelve of the participants were biological parents, being the father or the mother, while two were legal guardians, one being an aunt and another being a sister. the legal guidance was facilitated through the children’s act of 2008 (foster care). the population of the study comprised parents of children with disabilities attending lehlaba protective workshop of sekhukhune district of limpopo province. lehlaba protective workshop is a community-based disability centre that offers stimulation activities to children with disabilities. the biological profile of the participants is presented in table 1. for ethical reasons, pseudonyms were used to protect participants’ identifying details. table 1: biological profile of the study participants the age of the participants ranged from 24 to 43 years. a total number of 14 people participated in the study. seven of the parents were unemployed, while the other seven were employed. six of the respondents were married, while eight were single. of importance to note is that seven of the single parents are unemployed. the interview is a social relationship designed to exchange information between the participant and the researcher (de voset al. 2011). the study utilised in-depth interviews for individual participants and these were particularly useful for this study because they encouraged the participants to respond freely and for the researchers to probe for more information. the parents of children with disabilities were interviewed in offices at lehlaba protective workshop so as to make them relax and avoid nervousness among them. data analysis is a process of bringing order, structure and meaning to the mass of collected data (padgett 2016:68). qualitative data from in-depth interviews and observations were analysed according to themes that emerged during brief direct observations and from the discussions with the participants. the researchers transcribed all the interviews, a process that entailed listening to each interview and typing it. the researchers read the transcripts several times to become familiar with the information and during this process they made memos and looked at the similarities and differences emerging from the data. the researchers also made marginal notes on the transcripts, which helped in the initial process of exploring and analysing the data. the researchers went on to classify information by grouping together similar responses, a process described by rubin and babbie (2011) as taking apart text or qualitative information and looking for categories, themes or dimensions of information. this process is called coding. coding is the process of combing the data for themes, ideas and categories and then marking similar passages of text with a code label so that they can easily be retrieved at a later stage for further comparison and analysis (padgett 2016). in this study, data were coded using themes that emerged from the discussions. the researchers identified themes, categories and sub-categories that fell in line with the main research objectives. the researchers continuously examined the information, comparing and categorising the data, and breaking the categories down into fewer and more inclusive terms. this manual process enabled him to analyse the results as well as to develop an initial awareness of issues that came up in the interviews. the themes that emerged from the data analysis are presented in the ‘results’ section of this research report. ethical considerations permission to conduct the study was obtained from research and ethics committee of the university of limpopo (project number: trec/133/2016:pg). permission was also sought from the parents of children with disabilities and they consented for their participation through the signing of consent forms. the participants were also informed that participation was voluntary and that they could withdraw from the study voluntarily without any consequences. to ensure anonymity in the study, steps were taken to protect the identity of the participants by neither giving their actual names when presenting research results nor including any identifying details that could have revealed their identity, such as workplace, personal characteristics and occupation. the interview schedule also did not carry the actual names of the participants but rather tags in the form of numerical numbers and alphabetical letters. confidentiality was also preserved by conducting the interviews in private rooms. data collected from the study were kept confidential in a safe locker at the department of social work offices. trustworthiness trustworthiness in research is demonstration that the evidence for the results reported is sound and when the argument made based on the results is strong (denzin & lincoln 2008). four criteria to ensure valid interpretation of data were used in the study: truth value (credibility), applicability, consistency and neutrality. credibility in addressing credibility, investigators attempt to demonstrate that a true picture of the phenomenon under scrutiny is being presented (shenton 2004:66). credibility was ensured by using a qualitative approach to determine the experiences of parents of children with disabilities. the use of a purposive sample by the researcher ensured that the responses obtained are credible. the selection criteria used were that the respondents should be biological or foster parents of children living with disabilities. open-ended questions ensured that participants provide their opinions without the influence of the researcher. the interview also allowed the researcher to note non-verbal communication. credibility in the study was also ensured through investigator triangulation. a research assistant who was part of the team coded, analysed and made interpretations of the data from the recordings and notes that were written down. same themes, results and interpretations were yielded. transferability transferability relates to the extent to which the findings of one study can be applied to other situations (rubin & babbie 2011). in this regard, background data which include detailed information of the field area under study, which is sekhukhune district of limpopo province, have been given. dependability dependability entails that researchers should at least strive to enable a future investigator to repeat the study (shenton 2004). in this study, the researchers described in detail the research design, which is a framework for the collection and analysis of data. the researchers mentioned the method of data collection, which included in-depth interviews. to achieve this, the data collection instrument of an interview schedule was mentioned. such detailed description of the methods in the research provides information on how repeatable the study can be. conformability conformability refers to the fact that researchers must take steps to demonstrate that findings emerge from the data and not their own predispositions (shenton 2004). conformability was assured in this study by providing a detailed and informative research methodology. to achieve conformability, detailed records of data collected were kept for this study for peer review or outside audit if required. findings of the study three main themes that emanated from the study were: beliefs about disability resources for children with disabilities psychosocial experiences. cultural beliefs about disability cultural beliefs define who people are, how they interact with the world and how they behave in certain situations and can be considered a combination of religious beliefs, socially accepted norms and traditions. different cultural groups have different perceptions of the causes of disability (omu & reynolds 2012:124). this section will focus on the participants’ understanding of the causes of disability, cure for disability and their general understanding of the term ‘disability’. parents’ beliefs on the causes of disability the parents of children with disabilities had varied explanations on the causes of disability among their children. some parents voiced out that witchcraft (use of ‘black magic’) was the cause of their children’s disabilities. some echoed out that problems at birth (40%) were the cause, while some other attributed their children’s disabilities to motor vehicle accidents (30%). these findings on causes of disabilities were from the responses of the parents: ‘i suspect witchcraft because during my pregnancy one of my neighbours who i owed money told me she was going to fix me. i had prolonged labour and i suspect her for bewitching me.’ (parent j) ‘my husband was having another wife before she married me. the former wife told me she was going to curse me. it became a reality when i gave birth to my epileptic disabled child.’ (parent l) the above responses demonstrate that some of the parents believe that their children’s disabilities are a result of witchcraft. some of the parents however believed medical reasons to be the causal effect of disability in their children. ‘i got into labour when i was home and alone. my neighbours who came for assistance were not skilled in any way to assist me. when the ambulance came i had already delivered the baby. i was told by the nurses that my baby did not have enough oxygen during delivery.’ (parent i) this parent believes that the disability of her children was caused by a lack of qualified medical personnel to assist her in the safe delivery of her child. ‘my child had polio. i did not act quickly since i realized it late that my child was having difficulty in crawling and walking. when i went to the hospital for treatment it was too late.’ (parent k) the parent in the above response is acknowledging the fact that her son’s disability was caused by a medical condition, which is polio. one participant responded by saying a motor vehicle accident caused his son to be disabled and he does not believe in witchcraft. ‘my son was involved in a minibus taxi accident in 2011 when he was 5 years old when coming from holiday in pretoria. he sustained head injuries which caused brain damage. the doctors also said his spinal cord was disturbed.’ (parent h) the above responses point out that the child’s disability was caused by a motor vehicle accident. the participants thus had different views on the causes of disability to their children. some were of the opinion that witchcraft paid a part, while others noted medical reasons. parents’ beliefs on a cure for disability parents look for a cure for disability of their children in the early years. parents spent a great amount of money in trying both the western and african medicine for a cure of their children’s disability. the parents had different views and responses when it came to a cure of their children. ‘i believe one day the medicals will come up with a medical solution for my intellectually disabled son. i do get a drug called epilim every month at dilokong hospital. that drug helps my son to desist from aggression. i believe one day they will come up with a permanent drug to end his disability. just look at art therapy (anti-retroviral therapy). now they are going towards finding a drug to treat hiv/aids completely.’ (parent n) this guardian is of the belief that his son will be cured completely of his disability one day. ‘i have accepted that my son will spend his whole life in a wheelchair. i have tried by going to most churches even attending crusades of foreign preachers in gauteng but nothing has changed on the condition of my child. i do now believe that miracles happened during jesus times unless the son of god resurrects again. it is a hard decision to take but i have to accept the reality that my son is disabled for the rest of his life.’ (parent h) ‘i have been to prophets who come to gauteng from other african countries hoping that my child will be cured. i just have to admit that it has failed and i have to accept and live with the reality.’ (parent a) ‘i have gone from one traditional healer to the other, both locally and regionally to mozambique and zimbabwe but no ‘sangoma’ has cured the disability of my child.’ (parent f) it can be summed up that all the parents of children with disabilities searched for a cure of disability for their children. some are still hoping to find the cure, while some have accepted the disability of their children is lifelong. parents’ understanding of disability parents’ understanding about their children’s disability was surprising. all the parents did not understand their children’s disabilities well. they provided a general view about their understanding of disability. ‘i only know that my child has got a condition called cerebral palsy but i do not know what it means. after giving birth, no one (medical staff) bothered to inform me what i need to do in order to take care of my child. the experiences i am having are teaching and guiding me. it is like i am learning from the experiences i have.’ (parent j) ‘my child is autistic. he is 8 years. no one has ever informed me about handling a person with autism. sometimes you are not sure if you are doing the right thing. it is just scary not to know and understand your child.’ (parent l) ‘her abilities and limitations is what i do not know. this led me to underestimate her on her abilities sometimes. i was of the opinion that we should as a family do everything for her since she is on a wheelchair. one day she surprised us by saying she can make her bed alone. i felt guilty because i did not understand her disability.’ (parent m) these three participants’ expressions unearthed that they are not sure of their children’s disabilities. their understanding of disabilities is limited. this leads to unintentional harm to their children with disabilities. resources for children with disabilities assistive devices assistive devices include tools or equipment designed for the mobility of persons with disabilities. assistive devices can be in the form of wheelchairs (standard or motorised), crutches, walking frames and eating frames (who 2011). responses from the participants were as follows: ‘my child uses a specialised wheelchair known as the buggy. this buggy is more expensive than the standard wheelchair. this specialized wheelchair offers rehabilitation and avoids secondary disabilities. since it is expensive, i have to use a standard wheelchair and sometimes a wheelbarrow which is not suitable for my child and can cause secondary disabilities. i cannot afford the specialized wheelchair since i do not have any reliable source of income.’ (parent e) from the above discussion, it can be inferred that the parents are struggling to purchase assistive devices. some of the parents resort to using wheelbarrows as wheelchairs are scarce. this has got a negative effect as it causes secondary disabilities. professionals allied health professionals are paramount in the rehabilitation and upkeep of children with disabilities. they include social workers, psychologists, occupational therapists, physiotherapists and speech therapists. a guardian (foster parent) of a child with epilepsy reiterated that: ‘we do not have even a social worker. if we want the professionals, we go to dilokong hospital which is roughly 55 kilometres away. imagine travelling with a child with a disability for such long distances. and she really needs the services of a physiotherapist to rehabilitate her bodily movements.’ (parent i) the physically disabled require constant exercises from different therapists such as physiotherapists to avoid secondary disabilities. parent i (single unemployed mother) asserted that, ‘my child has never received any help from a physiotherapist or speech therapist as my child has problems with mobility and speech’. it can thus be noted that allied health professionals in the study area are not accessible to children with disabilities because of the distance. psychosocial experiences the social life of the family having a child with a disability tremendously affects everyone in the family. this includes the child’s immediate family members, who can be brothers or sisters. parents of children with disabilities brought to attention that isolation is now common in their life, as they no longer have a life other than looking after their disabled child. the following responses are in support of the above statements: ‘i always have a very busy day at home. i have to make sure that everything is in place.’ (parent j) ‘my other two children sometimes complain that i do not give them attention since most of the time i am always looking after their disabled young brother.’ (parent k) it should be noted that parents’ isolation is more evident in the mothers because the functions inherent to being a mother, housewife and permanent caregiver are time-consuming. the same does not apply to the fathers who are mostly breadwinners and at work most of the time. leisure activities for disabled people require an additional effort from parents, as society still does not recognise leisure as an essential right of disabled citizens (duncan, sherry & watson 2011:34). responses from the participants supported this notion that parents do not go out for leisure activities with their disabled children. ‘i do not go out with him since it is costly as i have to hire a private car.’ (parent c) ‘he spends the weekend at home, lying down or sitting in bed.’ (parent h) distress on time most parents spend most of their time taking care of their children living with disabilities. some of the responsibilities of the parents include bathing, preparing special dietary meals, feeding, toiletry duties and changing diapers or nappies. there was a sense of frustration in the amount of time devoted to caring for the children with disabilities. one parent was of the view that only death of the child is an end to the time spent on caring for the child. ‘actually all my time is spent on looking after her since i have to do almost everything for him: bathing, feeding, and changing clothes. almost everything. it means i do not have time for other things.’ (parent k) ‘all my time is now bound on taking care of my child with cerebral palsy, i have to do any little task for her as there will not be anyone to do it for her. i am scared to say it will be until god’s will but that is the reality.’ (parent c) fears of another child all the biological parents voiced their fears of having another child. both men and women were of the view that they will never try to conceive again as they are scared of having a second child with a disability. this is mainly because of the demands which are involved in taking care of a disabled child. ‘i am facing a lot of untold challenges in raising this child. this makes me reluctant to have another child. what if i conceive a disabled child again?’ (parent e) ‘this one who is disabled is the last born in a family of three children. i do not want to risk having another child who might turn out to be disabled.’ (parent h) ‘this is my first and last child. i do not want to end up having two disabled children. i have a disabled child now, what can stop me from conceiving another disabled child.’ (parent i) discussion of findings the study findings have noted negative aspects which are mainly encountered by parents of children living with disabilities at lehlaba protective workshop in sekhukhune district of limpopo province. the study has revealed that parents of children with disabilities have varying beliefs on the causes of their children with disabilities. the study noted that witchcraft is mainly to blame for disabilities of their children. these sentiments are echoed by omu and reymonds (2012:125), who are of the opinion that most african parents believe witchcraft as a cause of disability to their children. medical reasons were also noted in the study as having disabled their children. in support, anastasiou (2013:445) is of the same view that disability is a medical condition which requires medical means to resolve. findings from the study have highlighted that parents usually looked for a cure of their children’s disabilities. most of the parents looked for medical solutions, while others looked for divine interventions through religious means. some parents went a step further through the services of traditional healers and ‘sangomas’. in support of these claims, dillenburger and mckerr (2011:37) noted that parents usually spend a fortune in trying to find a cure and solution to their children’s disability. dowling and dolan (2001:31) also share the same sentiments in that most parents take much time looking for a cure and in doing that take time in accepting their child as disabled. the findings of the study have shown that parents are not usually aware of their children’s disabilities and this has negative effects on their upbringing. gupta and singhal (2014:34) also share the same sentiments in that in india parents of children with disabilities are not quite sure of the disability of their children. they just generalise which results in unintentional harm and secondary disabilities. results from the study have shown that resources for children with disabilities are problematic and scarce. assistive devices, for example wheelchairs, walking and eating frames, are always in short supply. wheelbarrows are used as an alternative, which can cause secondary disabilities. in support, visagie, scheffler and schneider (2013) opined that wheelchairs in rural areas are limited mainly because of the long process of application as well as lack of adequate funding. glumac et al. (2009:168) also noted that assistive technologies for rural children hinder their rehabilitation and progress in their livelihoods. services from professionals are critical in the field of disability rehabilitation. the study revealed that professionals such as audiologists, physiotherapists and occupational therapists are in short supply. this hinders their rehabilitation progress. in support, chitereka (2010:87) highlights that professionals who are pivotal for rehabilitations are in short supply in most rural areas. family disruptions have been seen in the study as negative implications of having a child with a disability. more attention is given to the child with special needs, and neglect takes centre stage from other children within the household. the study findings in this regard relate to legg and penn (2013:139), who are of the view that the presence of a disabled child affects each sibling individually, as well as the relationships between siblings. in short, the social life of the family is disrupted. having a disabled child also puts a strain on time of the parent or guardian. gona et al. (2011:181) also share the same sentiments in that for caregivers, mostly parents of children with disabilities, life is put on hold as they have to be available always for their children with special needs. a significant amount of time is spent on caregiving activities, such as feeding and changing diapers. thus, it can be concluded that parents of children living with disabilities are left without any time to do other activities, such as employment or leisure. problems associated with raising a disabled child have left many parents scared to have children altogether. the study findings noted that the burden associated with raising a disabled child made parents uncomfortable to have children. these sentiments are supported by hill and rose (2009:972) who postulated that stress of raising a child with disabilities is associated with fears of trying to have another child altogether. therefore, challenges associated with raising disabled children deter parents from trying to have children. recommendations the findings and literature review from this study have prompted the following strategic recommendations. care dependency grant the care dependency grant (cdg) needs to be awarded according to the nature of disability of the children. for instance, children with severe disabilities like cerebral palsy need to be awarded more financial resources as it is costly to look after those children. the department of development through its distributing agency, south african social security agency, needs to conduct a feasible study on the impact of cdg in relation to the nature of disabilities. healthcare and rehabilitation the department of health of limpopo province needs to come up with mobile clinics such that their services reach children with disabilities. the nearest health facility is approximately 55 km away and it makes it difficult for parents to transport their children for medical services. therapists (e.g. occupational, speech and physiotherapists) need to conduct fieldwork visits to centres for children with disabilities to foster community-based rehabilitation. legislation legislations available for children with disabilities include the constitution of south africa and the social security act. there is a need for a comprehensive disability act like other developed countries such that rights of children with disabilities can be advanced. support groups parents endure a great deal of emotional stress and burn-out when taking care of their children with disabilities. the department of social development needs to vigorously implement the formation of support groups for parents of children living with disabilities. these support groups will be instrumental in providing psychosocial support to parents of children living with disabilities. sharing ideas and meeting each other’s emotional needs help to remove the burden on the shoulders of the parents. the parents also need to start support groups through social media platforms such as whatsapp and facebook groups. this is less expensive and less time-consuming. conclusion the research study has made it clear that parents face negative experiences when raising their disabled children. parents demonstrated different views regarding the causes of their children’s disabilities. some were of the view that witchcraft was the cause of disabling their children. this finding supports those of mazibuko (2011), who urges that disability in the african context is mostly understood through african means, such as witchcraft and bad spirits. in support of this, gupta (2011) highlighted that most parents in developing countries do not have a clear understanding of their children’s disabilities. the researchers can conclude that parents of children with disabilities in the study area are in their own battle in raising their children. there are no available resources, both from the government and the private sector. it could also be concluded that there are varying conceptions about the causes of disabilities among children. some of the participants felt that they were left alone in the struggle of looking after their disabled children. some felt that they even do not have time for other activities, such as leisure and even employment. thus, in brief, it could be said that raising a child with a disability is time-consuming and straining. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.c.m. was the supervisor of the research project. b.t. was the student who conducted the research for the qualification of master of social work at the university of limpopo. funding this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. 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rosemary lysaght school of rehabilitation therapy, queen’s university, kingston, canada yetnayet s. yehuala institute of public health, university of gondar, gondar, ethiopia school of kinesiology and health studies, queen’s university, kingston, canada heather m. aldersey school of rehabilitation therapy, queen’s university, kingston, canada international centre for the advancement of community based rehabilitation, queen’s university, kingston, canada molalign b. adugna department of sociology, university of gondar, gondar, ethiopia dorothy kessler school of rehabilitation therapy, queen’s university, kingston, canada beata batorowicz school of rehabilitation therapy, queen’s university, kingston, canada jasmine montagnese international centre for the advancement of community based rehabilitation, queen’s university, kingston, canada klodiana kolomitro faculty of health sciences, queen’s university, kingston, canada citation krupa, t., lysaght, r., yehuala, y.s., aldersey, h.m., adugna, m.b., kessler, d., et al. 2022, ‘activity and participation experiences of people with disabilities in ethiopia’, african journal of disability 11(0), a1002. https://doi.org/10.4102/ajod.v11i0.1002 original research activity and participation experiences of people with disabilities in ethiopia terry krupa, rosemary lysaght, yetnayet s. yehuala, heather m. aldersey, molalign b. adugna, dorothy kessler, beata batorowicz, jasmine montagnese, klodiana kolomitro received: 22 dec. 2021; accepted: 29 may 2022; published: 16 sept. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: ethiopia, as a state party to the united nations convention on the rights of persons with disabilities (uncrpd), has committed to upholding the rights of people with disabilities in ethiopia. there is little evidence, however, reflecting the impact of this commitment on the lived experiences of people with disabilities in ethiopia. objectives: this study sought to uncover how the experiences of participation and activity shape the enactment of rights for ethiopians with disabilities as enshrined in the uncrpd. method: analysis of 25 qualitative interviews with people with disabilities and family members living in ethiopia used a reflexive thematic analysis approach to arrive at central themes. results: people with disabilities in ethiopia experience marginalisation, distress and practical challenges in both routine daily activities and participation in broader social roles and opportunities. these experiences affect their ability to claim many of the rights afforded by the uncrpd. conclusion: despite legislative efforts to bring about change in ethiopia, people with disabilities continue to live on the social margins. a meaningful change will require substantial allocation of needed resources by the ethiopian government to support national-level programmes and policy change. it is critical that people with disabilities and their families are engaged in receiving relevant support, and serve as change leaders. contribution: this study illustrates how marginalisation, distress and practical challenges in daily activities and social participation arise and are sustained for people with disabilities in ethiopia. the findings can help to inform the country’s efforts to enact the rights of ethiopians with disabilities as enshrined in the united nations convention on the rights of persons with disabilities. keywords: ethiopia; uncrpd; icf; capabilities approach; disability; inclusion; lived experience; qualitative research. introduction according to the world bank, 15% of the world population has experienced some form of disability, with most people with disabilities living in developing countries (world bank group 2018). the social status of people with disabilities in lowand middle-income countries has emerged as an international focus of interest, particularly since the release of the united nations convention on the rights of persons with disabilities (uncrpd) in 2007. the convention seeks to improve the life experience and opportunities for people with disabilities by codifying a variety of basic social, economic, cultural, political and civil rights. as of 2021, 164 united nations member states were signatories (united nations [un] treaty collection 2022). ethiopia ratified the uncrpd in 2010, meaning that it is legally binding in the country (un department of economic and social affairs disability 2022). the impact of the convention on the life experiences of people with disabilities is a central question underlying its practical importance. venkatapuram (2014) considered the influence of the uncrpd on both the legal changes observed in various countries in the aftermath of ratification, as well as the moral and ethical beliefs that foster such legislative change. what may be of greatest relevance, however, is how people with disabilities fare within local contexts. for example, a 2019 study conducted in three african countries (kenya, uganda and zambia) by the united kingdom (uk) economic and social research council and the uk department for international development aimed at examining the narratives of people with disabilities who experienced social and economic success, stories that they indicate are largely invisible from narratives about disability (shakespeare et al. 2019). the study found very different legislative responses to the uncrpd across these three nations, and a wide range of community assets in terms of educational opportunities, social supports and disability advocacy organisations. a key finding was that participants experienced many barriers and challenges, and because of limited assistance in the form of formal support structures, used their considerable personal resources (e.g. resilience, entrepreneurship and supportive social networks) towards successful participation outcomes (shakespeare et al. 2019). in ethiopia, efforts have been made to document the prevalence of disabilities through surveys and national censuses. however, clear and reliable data trends are not apparent because of variations in the definition of disability used, which may have resulted in overor under-reporting; moreover, prevalence is complicated by misconceptions about disability, lack of consistent data collection strategies across all regions of the country (especially rural areas) and unwillingness of families to reveal information about their children and family members (fms) during data collection (ministry of labour and social affairs 2012). the world health organization (who) (2018) estimates that 17.60% of the ethiopians live with some form of disability, suggesting that internal government estimates derived from ministry surveys and the national census (1.17% – 7.60%) have grossly underestimated its prevalence. based on the demographic profile of the nation, a large percentage of these people live in rural settings. the current life expectancy for the general population is estimated to be 67.81 years (united nations data, 2022), with projections for ongoing increases in that number, suggesting that age-related disability will become a relevant issue in the years to come. a number of factors challenge access to full social participation under the uncprd for people with disabilities in ethiopia, including poverty, negative attitudes and stigma, infrastructure, policy, communication, and barriers arising from the physical environment (getachew 2011; tefera et al. 2015; tekola et al. 2020). several barriers have proven particularly problematic, such as harmful cultural and traditional practices, lack of proper childcare, civil war, chronic drought and famine, and absence of early preventive actions (tefera et al.). ongoing political instability and violence in the country have created conditions for increased disability in the population, and pose a challenge for efforts towards addressing the rights enshrined in the uncrpd (tesfaye & mekuriya 2021). poverty is perhaps the most significant barrier (iyassu & mckinnon 2021), and coupled with rural living, leads to insufficient access to critical resources, including social services, health care and rehabilitation. people with disabilities are often expected to not only ensure an income for themselves but also provide for their families’ livelihoods (franck & joshi 2017). however, at the same time, they are believed to have little strength and to be unable to perform physical labour (getachew 2011) and other demands of working, and many depend on family support and begging for their livelihoods (franck & joshi). the latter condition leads many people with disabilities to migrate from rural to urban areas, where begging is more profitable (getachew 2011). disability is considered a highly taboo topic in ethiopia, with attitudes often deriving from supernatural interpretations, frequently resulting in blaming and avoidance (getachew 2011). similar to the neighbouring country of kenya, in ethiopia disability is perceived to occur because of missteps by the mother, such as infidelity, or the way the mother treats others while she is pregnant (bunning et al. 2017; franck & joshi 2017), thus, leading to the view that the child’s disability is a form of punishment or curse (bunning). despite the ethiopian government’s efforts towards inclusive education, stigma continues to create barriers for students with disabilities and their access to education (franck & joshi). however, there has been limited progress towards implementing legal instruments of disability and inclusive education that might counter these views (tefera et al. 2015). the rights and opportunities provided to people with disabilities in ethiopia vary in relation to several demographic factors. for example, individuals with mental disabilities can be restricted in exercising their legal rights to marriage, employment, property ownership and voting (marishet 2017). movements to challenge these restrictions are hampered by the lack of organised national advocacy efforts on behalf of, and including, people who live with mental disability (abayneh et al. 2017). disability experiences also intersect with gender. while generally more restricted in access to services and opportunities, the lived experiences of women with disabilities have only recently been a focus of the study (eds. baron & amerina 2007). a recent research study, for example, has demonstrated how the confidence, self-reliance and opportunities for women with disabilities who accessed higher education improved, but also had unintended consequences, such as dislocation from their places of birth and separation from their family (tefera & van engen 2016). ethiopia has ratified a number of international instruments and treaties in addition to the un conventions, and the constitution has made all international treaties ratified by the country ‘an integral part of the law of the land’ (federal democratic republic of ethiopia [fdre] 1995). the treaties themselves oblige the state to take legal, institutional and practical measures. in 2012, as part of its commitment to adopt these international conventions, the government of ethiopia introduced the national plan of action of persons with disabilities (ministry of labor and social affairs 2012). this is a comprehensive plan aimed at mitigating the challenges and barriers faced by people with disabilities in every aspect of their lives. ethiopia also launched a number of policies between 1994 and 2018, which address the needs for education, training, employment and building accessibility to improve the participation of ethiopians with disabilities and ensure their basic and civil rights. the constitution (art. 41 [3 and 5]) upholds the rights of every ethiopian national to equal access to publicly funded social services. it also articulates that support shall be provided to accommodate the needs of people with disabilities. despite the above efforts, the constitution itself positions people with disabilities as dependent on others and refers to them as recipients of charity, suggesting that they are incapable of contributing to the development of the country. art. 41(5) of the constitution states that: [t]he state shall, within available means, allocate resources to provide rehabilitation and assistance to the physically and mentally disabled, the aged, and to children who are left without parents or guardian. (fdre 1995) furthermore, the 2016 report of the committee on the rights of persons with disabilities highlighted a number of concerns in areas, such as employment, civil and legal rights, and the accessibility of public services (united nations, committee on the rights of persons with disabilities 2016). problems with the operational definitions of ‘disability’ impact practical implementation of policy, including decisions related to focused, informed disability policy development, resource distribution and lack of coordination between state and non-state actors and human resource development, to name a few. this study is grounded in two theoretical perspectives. the first is aligned with the international classification of functioning, disability and health (icf) (who 2007). as a classification of health, the icf identifies human activities and participation as important health-related states and recognises environmental and personal factors as contexts impacting health. in this way, the icf looks beyond bodily functions and associated illnesses and injuries as the primary indicators of health. the activity and participation categories of the icf identify many rights explicitly named within the uncrpd, for example, education, work and employment, health, mobility, participation in public life, and the cultural, sports, leisure and recreation life of the community. secondly, the study is grounded in the capabilities approach proposed by sen (1999) and refined by nussbaum (2003). this approach proposes that socio-economic development should advance human freedom. capabilities are a form of freedom (sen 1999), defined by ‘what people are actually able to do and to be’ (nussbaum 2003:33). stated simply, this approach focuses on the actions that support individuals to experience practical opportunities that they have reason to value. in this approach, the well-being and freedom of individuals are linked to the growth of human capital; the advancement of individual capabilities contributes to broader socio-economic well-being. nussbaum proposed 10 central human capabilities to serve as a focus for the quality of life and social justice measurement for societies, these beginning with life, health, emotion and integrity, and more socially embedded elements, such as the right to affiliate with others, have control over one’s environment and to play. sen (1999) observed that capabilities will vary by society, such that basic capabilities that should be guaranteed are determined within a local context. both the icf and the capabilities approach are concerned with human functioning; however, there are important distinctions. the icf offers a descriptive classification system of functioning and disability, while the capabilities approach focuses on capabilities as essential to human well-being and equity. disability scholars have suggested that there is a synergy between these two frameworks that may help to operationalise the capabilities approach (bickenbach 2014; mitra 2014). in this study, the researchers sought to lay the groundwork for actions that could advance the socio-economic position of people with disabilities in ethiopia. the study addressed the following research question: how do participation and activity experiences shape people with disabilities’ enactment of their rights as enshrined in the uncrpd? this study focuses on one aim of a needs assessment conducted in the fall of 2019 and the spring of 2020 to inform the development of a post-secondary occupational therapy education programme in northern ethiopia. the goals of the needs assessment were to understand: (1) the activity and participation experiences of people with disabilities and those vulnerable to disabilities in ethiopia, and (2) how occupational therapy as a profession might support presently unmet service needs related to disability in ethiopia. while these are two distinct goals, they are highly related. the goals were purposely constructed to move the needs assessment beyond the biomedical perspective and approaches that have characterised ethiopian health systems in order to enable understanding of the daily lived experiences of people with disabilities in relation to capabilities, functioning and practical opportunities as they are expressed within and influenced by the local context. research design and methods the full needs assessment involved surveys with 50 health service providers and stakeholders working in non-clinical roles (e.g. government and non-governmental organisation workers), and 44 interviews ith a range of stakeholders, including health service providers, non-clinical stakeholders, people with disabilities and their families. in order to study the activity and participation experiences of people with disabilities in ethiopia, which is the focus of this study, we analysed the data collected during the 25 qualitative interviews with people with disabilities and their families. ethical approval for the needs assessment, including both aims of the project, were received from the university of gondar, ethiopia (certificate #: o/v/p/rcs/05/354/2018) and queen’s university, canada (certificate #: reh-738-18). all participants provided informed consent, with consent forms and information about both goals of the project offered in their primary language. recruitment of participants people with disabilities and their families were recruited in two ways. firstly, the directors of selected hospitals in ethiopia accessed the hospital logbook of people with disabilities receiving services, and every other person listed in the logbook was invited to participate. secondly, a purposeful selection of people with disabilities involved in post-secondary studies and supported through an inclusive education programme were approached to participate. specifically, these participants were recruited with a view of ensuring a range of disabilities were included. participants were included if they were aged 18 years or older, self-identified as a person with a disability (or a fm of a person with a disability) and could speak amharic. data collection the interview questions were aligned with the icf, in which activities are defined as the execution of tasks or actions by an individual, while participation refers to involvement in life situations (world health organization [who] 2001). the interviews were conducted by staff associated with the university of gondar, who received training in qualitative interviewing and the goals of the needs assessment. interview questions for people with disabilities in the community asked participants to reflect upon general activities, self-care and home living, community mobility and access, productivity, and leisure-social-recreation activities. participants were also asked to reflect upon priority needs related to activity and participation, to identify barriers they face and to suggest solutions. the interview guide is presented in table 1. questions for fms asked them to reflect upon these topics specific to their fm with a disability, as well as for their family more generally. interviews lasted approximately 45 min – 60 min each and were conducted in amharic. interviews were transcribed in amharic, and subsequently translated into english. table 1: interview guide. data analysis in order to examine the activity and participation of people with disabilities in ethiopia (the focus of this study), analysis of the qualitative data followed braun and clarke’s (2006) six-phase reflexive approach to arrive at central themes. consistent with braun and clarke’s method, the lens of analysis was grounded in the selected theoretical frameworks (i.e. capabilities approach and icf) and immersion in the data (braun & clark 2021). three of the current authors completed this inductive analysis, and subsequently every member of the research team involved in the development of the current study met on several occasions to reach agreement on interpretations. themes were developed and integrated with direct quotes, and where differences in interpretation arose, investigators returned to the data. cross-cultural research is particularly vulnerable to difficulties in building the necessary rapport with participants and to misinterpreting the meanings of dialogue. in order to address these issues, translators were fluent in both languages, as well as with the key concepts and terms central to the focus of this study. issues related to translation were brought back to the full investigative team and with team members having familiarity with the language and local cultural context enabling interpretation. reflexivity was critical to analysis, with consideration provided to the extent to which interpretations were based on researcher assumptions. for example, where activities identified by participants were based in the local culture the research team expanded their understandings of the nature and context of these activities. participants all 25 transcripts conducted with people with disabilities and their families were analysed. these included 19 interviews with people with disabilities (8 females and 11 males) and six with fms of people with disabilities (all female). nine of the persons with disabilities experienced a physical disability-mobility impairment, six had a visual impairment, three lived with mental health issues and one had leprosy. all six fms had fms who experienced a physical disability or mobility impairment. a total of 10 out of the 19 persons with disabilities were university students, seven were unemployed (all formerly employed), one was retired and one was a homemaker. seven participants were from addis ababa and the surrounding areas, nine from gondar and the surrounding areas, two from debre markos town and the remaining from seven other geographical locations in ethiopia (rural areas near bahirdar, deberebrehan, telemet, sendafa, west harrerge, dessie and jimma). interviews were completed in each of these regions. the results are presented next with illustrative, direct quotes. the participants associated with each quote are identified by number and as either a person living with disability (plwd) or a fm. findings the data suggest that people with disabilities in ethiopia experience marginalisation, distress and practical challenges in both routine daily activities and broader social roles and opportunities. these challenges presented in various ways across the range of disability experiences, and thus differentially affected activity and participation patterns. for example, the study’s narratives included descriptions, such as this one, of people with disabilities who were largely disengaged from activities and participation, and idle and bored: ‘after i get sick [disabled], my leg, i could not move around because it was covered with jeso [a bandage] so i use crutches for movement. i only go for follow up. i stayed at home in the meantime. due to this i could not participate in other activities so i feel frustrated. well i still watch tv but i could not do any other voluntary activities. i perform all the activities through phone but not going out is what used to make me frustrated.’ (plwd-11) for those involved in social roles, such as being a student or parent, frustrations were common in response to both practical and social barriers to their full engagement in these roles. for example, plwd and fms alike spoke of having to give up employment when a disability was acquired. post-secondary students in this study provided examples of being subject both to the negative attitudes of others who assumed that their academic accommodations were a form of unfair advantage, and of their grades being impacted by limited resources and learning processes designed to support their participation. while there were many examples provided for receiving helpful instrumental and emotional support from others to enable activities and participation, the need for support could be experienced as a form of dependence and burden. for example, when fms gave up work to provide care, this posed an economic strain on families and could damage relational bonds between fms. one of the mothers stated: ‘since i am not working my families consider me as a dependent person and sometimes they say offending words about me. i sold my house to take care of my child, i become below everybody. i was supposed to have better life. now i am not working because i don’t have someone to look after my child.’ (fm-18) overall, the findings suggest that participants perceive a number of environmental barriers to full participation in activities fundamental to daily life. this situation was described as being sustained by several factors that ranged from a general lack of understanding of disability by the public to a lack of attention to the needs of people with disabilities in infrastructure planning to, at worst, discrediting the value of people with disabilities and their families. as a result, many people with disabilities and their families experienced feelings of shame, fear, unfairness and powerlessness. the situation also posed ongoing threats to subsistence that could lead to a choice to meet basic survival needs over activities that might provide meaningful and inclusive engagement. for example, participants spoke of needing to choose shelter over disability-related services and participating in begging as the only accessible way to earn an income. as a result of this marginalisation and distress, people with disabilities expressed not being able to experience the health and well-being benefits that are associated with common activities and participation. study participants observed the desire to contribute to personal well-being, their families and communities, particularly in the form of paid work. in addition to providing much needed income, the lack of access to work opportunities could result in a lack of structure to daily routines, and the loss of important social roles that provided identity and acceptance, and what one participant recalled as the ‘good life’. three themes emerged illustrating how marginalisation and distress arise and are sustained for people with disabilities: exclusion through attitudes about difference, disadvantage through infrastructure inequities and inhibited potential because of resource unavailability. exclusion through attitudes about difference perhaps, the most pervasive social processes associated with limitations in the activity and participation patterns of people with disabilities in ethiopia were those consistent with ‘othering’ – the casting of their roles in a society in damaging forms. this presented as disparaging people with disabilities through broadly held beliefs that disability is a form of supernatural curse. this belief, as illustrated by the following quotes, justifies marginalisation, shames the individual and the family, and damages social bonds: ‘but when i see the perception of others, even they do not think that disability is caused by different reasons. people think that disability is related to a curse or nature. for example, in our area, there are genes [devils] called “angote” and “eshetie.” that means “angote” genes are not allowed to marry with the “angote” themselves and the same goes for “eshetie.” they associate disability with this and they think that the problem of disability comes as a result of injustice or sin of the family.’ (plwd-42) a university student stated: ‘they relate your disability with god’s blame and bad belief. actually, in the beginning i also related it with bad belief before i came to this modern education. even this was the reason that i was separated with my family because they associate it with this bad belief.’ (plwd-14) the marginalised status of people with disabilities is further sustained by the lack of awareness and understanding of disability among the general public. the participants described a range of public misperceptions about disability, including assumptions that the idleness experienced in the context of disability was evidence of moral failure. a lack of understanding was reported to be pervasive; a student with visual impairment stated: ‘even educated people, including teachers, have a wrong view of disabled persons. as i’ve said, there is a problem that perceiving that all disabled people are the same.’ (plwd-41) lack of knowledge was also evident through beliefs that disability was contagious, such that people did not want to touch a person with disability. as participant 41 further observed: ‘in addition, there is a problem of understanding that if a person has a disability, they think that they will be exposed to other diseases. but i do not see blindness as exposing others to other disease.’ (plwd 41) with limited representation of people with disabilities fulfilling important social expectations and roles, such as earning an income, working and marrying, the prominent perception becomes one where individuals are viewed as incapable. one of the university students who had relocated from a rural to an urban area, for example, perceived that community members looked to participation in adult roles as evidence of capability: ‘there is lack of awareness in the society even if they see you can do it but they don’t want to admit it. it is actually better in the city but in the rural area they only say they can’t but not they can. even when they see me learning they think that i am not capable. i think they expect this till i get married or get money and they don’t think i am learning here.’ (plwd 15) participants also described societal attitudes that assumed that people with disabilities should not be expected to contribute and take on social responsibilities, and that this contributed to their segregation. one participant described how she became left out of her many previous community activities as a result of negative social responses to her disability: ‘well previously i used to strongly participate in the community but now i am asking for help. i could not serve, or hold a position in idir [i.e. an informal cultural community support network] or female’s association like i used to be. i used to participate on different community development committees but i am now excluded in such areas. even when there is election they say “please leave her, she is sick.” so, these things make me feel bad.’ (plwd-13) disadvantage through infrastructure inequities participants described how access to opportunities for activities and participation was made difficult in response to disabilities and observed a number of inequities in the social and physical infrastructure. inequities in access to education negatively influenced the development of the knowledge and skills needed to pursue future jobs. one of the participants stated, ‘[w]hen we see education in rural areas it may be better when compared in the past, but still it is not enough, it is very low’ (plwd 14). another stated: ‘for example if there were two candidates with a degree for job vacancy; one blind and the other not. i think they will give support for those without disability. actually now there is a thing to encourage people with disability on different medias, but i don’t think it is actually implemented so they give priority for healthy people with full potential. therefore there need to be specific criteria for them.’ (plwd 13) where work participation was impacted by disability, individuals and their families were highly vulnerable to economic insecurity, which, in turn, could lead to further limitations on work. for example, a farmer described how his inability to work as a result of a health condition led to the loss of farmland. there was a need for the affirmative development of work and income opportunities for people with disabilities in ethiopia. it was suggested that while advancements in higher education for people with disabilities had been made, efforts in this regard had a limited focus (i.e. advantaging those with physical and vision-related disability), and there was a lack of attention to job opportunities upon graduation. one of the participants suggested that this lack of opportunities had led to begging as the default occupation for people with disabilities: ‘as i see from other places such as abroad there is an opportunity for them to live the life they want by themselves. so having this kind of organization in ethiopia is good because there are a lot of people with disability who does not get support, some engaged in begging. so, if they get appropriate training on some jobs and get some skill, i am certain they can be independent.’ (plwd-11) some participants expressed their views that common activities and participation limitations were not explicitly and routinely considered in the design, planning and implementation of community infrastructure. an urban-dwelling participant stated: ‘there is construction of many roads, buildings and a mall so not considering people with disability is lack of awareness. for example, when someone constructs a building there needs to be ramps for those with disability. i don’t think it will cost that much money when compared to the entire building.’ (plwd-13) this lack of attention to accessibility included problems related to locating important spaces (e.g. classrooms) in inaccessible locations, failure to include ramps and lifts, and the design of toilet facilities. in education and work environments, this included limited attention to availability of the tools or resources that would support participation, such as access to braille books and other education and communication technologies: ‘[w]hen it comes to education there is a problem with materials. still the problem exists. this has caused me problems. not only for me but also for others. when you mention people with disability this problem is always mentioned. we cannot read any book we want. i still feel bad by this. the books are not prepared in braille, or you cannot find them by audio or by softcopy. this one is another challenge. when we want to develop our mind there is no accessibility to meet our needs.’ (plwd-14) participants observed the difficulties that the rural settlement patterns and rough terrain of ethiopia posed to the activities and participation patterns of citizens, in general. these difficulties are magnified when it comes to integration of accessibility and inclusion in community and infrastructure planning. for example, a student who lives with a disability described how a desire to work in a rural area was limited by geography and road access: ‘i want to go to the rural area to teach but the main challenge is the landscape, there is water, mountains, low lands and the roads. so, the road problem must be solved – not only that – other infrastructures should be fulfilled.’ (plwd-15) another participant perceived the extent to which she had to depend on the local community simply to leave her house because of the local climate and terrain: ‘i used to need support to move because my house’s landmark is very bad, it is downhill. therefore, i need someone to hold me because i could not hold it with my hands. i was in bed for four months. i don’t go out. i was planning to sell the house because of this. the house is downhill, there is rain and mud so to pass that you need to have someone to support you. i just wait for the people to come. i don’t go out or come in as i want.’ (plwd-13) inhibited potential because of resource unavailability the interview narratives provided descriptions of a range of factors that limit activity and participation, including unresolved issues with mobility, vision, strength, pain, stress and substance use management. such restrictions could impact the ability to carry out everyday activities, such as basic self-care, lifting, household tasks and transportation use. that said, a primary concern was that people with disabilities and their families had inadequate access to the rehabilitation services, technologies, other health services and government supports that could make a positive difference in their lives. consistent with the finding that disability is often afforded supernatural explanations, some participants described seeking cures through religious and traditional healing practices: ‘my son is now addicted to khat [psychoactive substance]. he is having a mental health problem. he simply talks by himself but he does not do any other harm. we have tried a lot for his health with medical service and tsiebel [holy water].’ (plwd-11) a participant from a rural area reported: ‘when i was a kid my rural family took me to a rural witch doctor and got me an operation to this [tumor on the right side of his face near to his eye]. then when i grew up the wound was changed to another thing.’ (plwd-12) where individuals did receive treatment from medical doctors and other health services, participants described limitations in the help they received. it was mentioned that they did not necessarily receive a clear explanation of their health condition and disability. furthermore, there was the perception that reliable information from the health sector about disability was not reaching the broader public, and thus having little impact on the view of disability as a curse for wrongdoing. there was a problem observed with the quality of equipment available in the health and rehabilitation sector, specifically the breakdown of technology. the need for money to access treatment and disability-related equipment was reported as a barrier. one participant with hemiplegia noted the need for a wheelchair and assistive footwear, and asked, ‘i don’t have money because i don’t work. how can i buy a wheelchair for 60 000.00 birr?’ (plwd-9). beyond treatments directed to the health condition, there was an identified need for organised community services focused on promoting agency and a sense of well-being. a fm commented: ‘i can see how well she feels when someone comes and has a conversation with her. therefore, it would be useful for us if we could get someone by our side who can visit us regularly and provide support and consult us about coping mechanisms that will make things easier.’ (fm-02) such health and rehabilitation services were considered important to the health and well-being of the family, as well as the individual with a disability: ‘it’s very important to know that people with disability are not the only one who need support and treatment; people who are giving care are also a victim for many things like stress, depression and discrimination. therefore, the government should have different rehabilitation centers that give full accommodation for people with disability and the caregivers.’ (fm-02) there was a significant need for agency and resourcefulness to advance their ability to engage in meaningful activities because of lack of community support: ‘actually, it’s to do with my dream and to support myself. i participate in different associations and i get some benefits. you may take training. there may be some money you get during the training. i am also a musician, amateur musician. i used to work in night club and get some benefits. there were also some wealthy people and people who saw my goal in [name] town who supported me til high school and then til i took my 12th entrance exam.’ (plwd-14) the role of government and non-governmental organisations in providing disability-related services and access to opportunities for activities and participation in the community was highlighted as fundamental to meaningful change across the ethiopian society. respondents identified advocacy as a necessary precursor to change. it was observed that people with disabilities needed to be advocates through demonstrating what was possible, particularly in rural areas: ‘you need to show them that you can eat together. you need to show them by playing, joking through drama or doing other things … as i mentioned earlier most of ethiopian population is found in rural area so we need to give awareness on that area, we people with disability.’ (plwd-14) it was noted that community members also need to help change attitudes: ‘even if we people with disability are the one who need to take the lead, other educated community members need to change the awareness by using literature or other things, written or orally. the problem is big and it still exists.’ (plwd-14) discussion the study findings highlight the barriers to activities and participation opportunities afforded to participants with disabilities in ethiopia. these participants described the difficulties they experienced in accessing opportunities they perceive as meaningful, including work, school, involvement in activity groups, parenting and moving about their communities. their experiences of these limitations include frustration, idleness and boredom, and a feeling of dependency. while their descriptions observed the deprivations they experience in activity and participation in relation to impairments associated with disability, they also highlight the extent to which these are experienced as emerging from broader societal forces of marginalisation and exclusion. these forces include attitudes about disability, restrictions created by infrastructure inequities, and limited support services and resources. it is important to note that these marginalising forces are present even when participants are engaged in important activities, such as education and parenting. for example, students with disabilities in post-secondary studies, while experiencing impairments, such as blindness and mobility restrictions, study in contexts where access to learning resources, such as braille books, is growing but still constrained; likewise, physical structures, such as stairs, continue to limit access to classrooms and deny access to other places where students and faculty might gather. these forces engender limitations in choice, lead to a focus on basic survival, and produce negative feelings, such as shame, fear, powerlessness and the sense of being infantilised. while there is the indication that such forces are perhaps stronger in rural communities, concerns were also raised that they were broadly relevant across the country. it is likely that such feelings of exclusion will be even more keenly felt in the post-war context based on the disproportionate impact of social unrest and regionalised disasters that is typically experienced by people with disabilities (pineda & corburn 2020). in addition, the population of people with disabilities has dramatically escalated because of the war, placing additional strain on existing resources (berhe 2017). from the perspective of the capabilities approach as developed by sen and nussbaum, the experiences of marginalisation and distress that were expressed provide evidence that people with disabilities in ethiopia experience deprivations with respect to freedom to be able to perform the things they value, to develop their identities and potential, and to contribute to their communities. while it can be argued that many of these deprivations are experienced by ethiopians more broadly, their impact on participation is perhaps more keenly felt in the context of disability. in fact, several participants with acquired disabilities reported how valued roles were lost as part of the transition to living with disability, and others described how they experienced deprivations even while engaging in valued social opportunities. nussbaum has suggested that jurisdictions can consider setting the minimal standards for capabilities, below which no citizen should fall, and thus identifying the rights to be ensured by governments and related institutions (nussbaum 2003) and developed by concrete policies and actions (comim 2014). in terms of physical accessibility, the ethiopian building proclamation (fdre 2009) seeks to regulate the construction industry in order to ensure that basic safety and quality standards are followed. part of this code asserts the need for public buildings to be fully accessible to people with physical disabilities. this type of attention to disability access in public documents is important – but it is evident that widespread infrastructure change is slow to arrive because resources are limited. attitudinal change may be particularly difficult to address when beliefs are deeply enculturated. stigma and discriminatory attitudes in africa have been found to be prevalent in sustaining the marginalisation and exclusion of people with disability. in this study, examples were provided on how these attitudes could lead to both exclusion and segregation while individuals engaged in personally important activities. it was observed how these attitudes could be held by those holding important positions of authority (such as teachers, religious figures and government personnel) who might be expected to be in a position to both support an individual’s engagement and advocate for positive social change. disability awareness and advocacy will be instrumental for fostering empowerment, inclusion and development of people with disabilities in ethiopia. education will play a critical role in addressing the misperceptions that feed stigma, but positive contact between the public and people with disabilities fulfilling meaningful and socially valued roles has been demonstrated to be particularly impactful in changing attitudes and promoting acceptance (e.g. chae, park & shin 2019; novak, feyes & christensen 2011). supports, legislation and opportunity structures will be needed to ensure that such contacts can happen. because of the economic constraints facing every system in ethiopia (e.g. education, government, health care and employment), change will require creative solutions that are made in ethiopia and draw on the strengths of the disability community itself. community-based rehabilitation (cbr), an approach that is endorsed by the who, is already established in this country to address the needs of people with disabilities (see, for example, asher et al. 2015; fentanew et al. 2021). the core pillars of cbr include health, education, livelihood, social and empowerment (who 2010). empowerment is perhaps the key element among these elements because of the apparent need for grassroots advocacy, and in order to address the sense of resignation that seemed present in many of our interviews. rehabilitation professionals can assist in the change process by promoting access to needed services and by engaging people with disabilities in the advocacy process. as noted by stevens et al. (2019:241), ‘rehabilitation professionals have the important job of allies and advocates for persons experiencing social restrictions in these domains as a result of stigma’. given the strong biomedical approach currently informing the ethiopian health system, it will be important to ensure that rehabilitation services are organised to champion participatory and empowerment-based approaches to service delivery. limitations this study was not without limitations. the study included a sample wherein a larger proportion of participants were university students and persons with visual impairments than in the general population of people with disabilities. while we made efforts to recruit across the country, most participants were from the northern region of ethiopia. readers are encouraged to take into account these participant demographics in considering the regional relevance of the findings of this study. finally, interviews were conducted in amharic. although the study used rigorous processes for translation and back translation of data, some concepts may not have a perfect equivalency across the two languages of amharic and english, and therefore, the study may have lost some of the original richness in description for an english language readership. we hope that the involvement of bilingual ethiopians in the research team has helped to reduce the likelihood of misinterpretations. despite these limitations, we believe that the study findings present valuable information on activities and participation as experienced by some people with disabilities in ethiopia and their families. conclusion this study sought to uncover how participation and activity experiences shape the enactment of rights for ethiopians with disabilities as enshrined in the uncrpd. in this study, we have viewed the uncrpd from the perspective of the activities and participation opportunities that people value, which have meaning in the local context. this may be useful in interpreting application of the convention, in that activity and participation experiences can inform official data concerning disability, and help identify environmental factors, such as resources, social processes and infrastructure, that require attention in order to improve accessibility and acceptance. the task of honouring the uncrpd articles is a difficult one, particularly in a low-to-middle income country with many challenges to socio-economic development, while operating in a context of a civil war and pandemic. while many advancements have been made in achieving basic human rights for people with disabilities in ethiopia since the country has become a signatory to the uncrpd, much work remains to support capabilities, fully realise full human rights and enable full participation. the study findings suggest a number of actions, which may assist in this transition, including the need for suitable physical and legislative infrastructure to ensure access to resources that support activity and participation, improved access to health and rehabilitation services, broad awareness raising to address social misperceptions of disability, and reinforcement and further development of disability organisations to support all of these actions, while also building empowering peer support networks for ethiopians with disabilities and their families. acknowledgements the authors express their appreciation to the full needs assessment committee who contributed to the design of the larger study from which this work is drawn: heather aldersey, beata batorowicz, vincent depaul, catherine donnelly, rylan egan, solomon fasika, setareh ghahari, abayneh girma, julia jansen-van vuuren, anushka joseph, dorothy kessler, klodiana kolomitro, terry krupa, rosemary lysaght, solomon mekonnen, nebiyu mesfin, carol mieras, jordan miller, nomusa mngoma and jasmine montagnese. competing interests the authors have declared no competing interests exist. authors’ contributions all authors worked collaboratively to conceive of the overall focus of this analysis and the approach to its presentation. r.l., m.b.a., y.s.y., t.k. and h.m.a. developed the background context and theoretical positioning. t.k., d.k., r.l. and b.b. conducted the detailed data analysis. y.s.y. and m.b.a. verified all translations and quotes presented. j.m., h.m.a., r.l., k.k. m.b.a and t.k. contributed to the initial discussion draft. all authors discussed the results and contributed to the final manuscript. ethical considerations this study received ethical clearance from the university of gondar, ethiopia (certificate #: o/v/p/rcs/05/354/2018) and queen’s university, canada (certificate #: reh-738-18). in order to protect the anonymity of the participants that took part in the study, limited participant identifiers have been provided. funding information this project was supported by funding from the mastercard foundation scholar’s programme, contract #1007054. data availability raw data for this study 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united nations treaty collection, 2022, united nations treaty collection, viewed 20 april 2022, from http://treaties.un.org/. venkatapuram, s., 2014, ‘mental disability, human rights and the capabilities approach: searching for the foundations’, international review of psychiatry 26(4), 408–414. https://doi.org/10.3109/09540261.2014.926867 world bank group, 2018, disability inclusion and accountability framework, world bank group, washington, dc, viewed 22 april 2022, from https://documents1.worldbank.org/curated/en/437451528442789278/pdf/126977-wp-public-disabilityinclusionaccountabilitydigital.pdf. world health organization (who), 2001, international classification of functioning, disability and health, who, geneva. world health organization (who), 2007, international classification of functioning, disability and health-children and youth version, who, geneva. world health organization (who), 2010, introductory booklet: cbr guidelines, pp. 1–70, who, geneva, viewed 16 april 2022, from https://www.who.int/publications/i/item/9789241548052. world health organization (who), 2018, country cooperation strategy at a glance – ethiopia, viewed 22 april 2022, from https://apps.who.int/iris/handle/10665/137170. book review interrogating the relevance of ubuntu philosophy for disabilities in sub-saharan africa book title: ubuntu philosophy and disabilities in sub-saharan africa author: oliver mutanga isbn: 978-1-032-38141-1 publisher: routledge, new york, 2024, price: r3088.35* *book price at time of review review title: interrogating the relevance of ubuntu philosophy for disabilities in sub-saharan africa reviewer: mapheyeledi motimele1 affiliation: 1department of occupational therapy, faculty of health sciences, university of cape town, cape town, south africa corresponding author: mapheyeledi motimele, maps.motimele@gmail.com how to cite this book review: motimele, m., 2025, ‘interrogating the relevance of ubuntu philosophy for disabilities in sub-saharan africa’, african journal of disability 14(0), a1619. https://doi.org/10.4102/ajod.v14i0.1619 copyright: © 2025. the author. licensee: aosis. this work is licensed under the creative commons attribution license. oliver mutanga (ed.) and the contributors to this book are applauded for their critical insights and authenticity expressed through deliberately and intentionally centring their work on the affirmation of a shared humanity (ubuntu) and the implications of centring this philosophy, for persons with disabilities, whose humanity remains in question and/or denied in society, despite legislation, policy and initiatives to address the status quo. from philosophy to practice the data, perspectives and critical arguments about the potential for ubuntu philosophy to promote critical disability scholarship and social inclusion in sub-saharan africa highlight education, governance and social development as sectors that are critical for social change at both the macro and micro levels. the authors’ contributions unpack how ubuntu philosophy has the potential to guide initiatives or practical implementations of this philosophy, in our daily lives as educators, researchers, students, activists, policymakers and community members. furthermore, the reader is challenged to critically reflect on the continued exclusion and underrepresentation of disability within everyday spaces where ‘humanity is enacted’ (kronenberg 2018), despite efforts towards the contrary. what is the continued cost(s) of this and what are the structural, relational and agentic changes required to shift ubuntu philosophy towards ubuntu practice? gore (2024), mbazzi (2024), and marovah and mutanga’s (2024) chapters are helpful for their critical descriptions and considerations of what this may look like within higher education in south africa, disability inclusive interventions in uganda, and broader research within the global south. disability as an expression of coloniality regardless of one’s discipline, we should all be deeply concerned with the question of humanity. more specifically, ‘what does it mean to be human?’ and ‘what are the structures, systems and social arrangements that dehumanise or deny the humanity of some, while ‘authorising’ and thereby privileging the humanity of others?’ (motimele 2024). from a decolonial perspective, the construct of ‘disability’ is deeply embedded within and impacted by coloniality, which continues to authorise and/or deny being through systems, structures and orientations that promote notions of inferiority and superiority, and therefore being/non-being (fanon 1967). we have to grapple with these foundational questions if we are to understand the ways in which we (as both individuals and collectives) impact each other’s experiences of being/non-being, and how these experiences are expressions and manifestations of geopolitical relations of power (grosfoguel 2006), especially as this relates to disability. chinangaidze et al.’s (2024) chapter is insightful for their interrogation of the social, political, economic, environmental and technological relevance of ubuntu philosophy towards disability inclusion across various sectors. their analysis reinforces the wide-spread need for ‘ubuntu-centred’ notions of disability and inclusion that support a collective duty of care. what of an ‘ubuntu-informed’ disability model? a common theme discussed by various authors in this book is the urgent need for a model of disability located within ubuntu as a central philosophy, highlighting the need for centring indigenous knowledge systems within education policy and curricula (ned 2019), especially as this relates to disability studies. such a model holds potential to foreground the notion of humanity as an interconnected and intersectional experience, despite configurations of context that focus on separateness and reinforce social stratification. i encourage the authors to collectively consider how an ubuntu-informed model of disability may look, thereby offering a critical tool for further engagement, interrogation and refinement. shandu-phetla, ngubane and adigun’s (2024) chapter is especially thought-provoking for its consideration of technology and assistive technology, which, although widely considered as a social advancement and disability inclusion tool, risks further perpetuating disability exclusion, should the impact of disabling contexts, systems, structures, and relations, remain overshadowed by issues of race and gender in terms of equitable access to higher education institutions. in conclusion, this book is highly recommended for disability scholars, educators, community leaders, health and social development practitioners and/or anyone concerned with social justice. this book encourages one to interrogate the ‘why’ and ‘how’ of their scholarship and/or practice and consider how they might anchor these in ubuntu philosophy, while simultaneously navigating the risk of perpetuating disability exclusion through dominant disability perspectives, frameworks, methods, methodologies and interventions. what i most appreciated about this book was the opportunity it provided to ‘gather’ with advocates for ubuntu-informed practice and scholarship in sub-saharan africa, through their research and critical insights. as a researcher, educator, occupational therapist and spiritual counsellor situated in the global south, this book offered opportunity to reflect on my core beliefs and values and reimagine how these may need to shift to prioritise contextual relevance, disability representation and intersectionality as considered within an ubuntu perspective, especially as this pertains to disability exclusion, marginalisation, erasure and dehumanisation. references chinangaidze, r.k., mafa, i.h., simago, t.g. & mudehwe, e., 2024, ‘the relevance of ubuntu in disability: a political, economic, social, technological, legal and environmental (pestle) analysis’, in o. mutanga (ed.), ubuntu philosophy and disabilities in sub-saharan africa, pp. 18–29, routledge, new york. fanon, f., 1967, black skins, white masks, grove press, new york, ny. gore, o.t., 2024, ‘disability and inclusion in south african higher education: an ubuntu philosophical perspective’, in o. mutanga (ed.), ubuntu philosophy and disabilities in sub-saharan africa, pp. 30–47, routledge, new york. grosfoguel, r., 2006, ‘world-systems analysis in the context of transmodernity, border thinking, and global coloniality’, review (fernand braudel center) 29(2), 167–187. kronenberg, f.c.w., 2018, ‘everyday enactments of humanity affirmations in post 1994 apartheid south africa: a phronetic case study of being human as occupation and health’, unpublished, phd thesis, university of cape town. marovah, t. & mutanga, o., 2024, ‘ubuntu philosophy: a pathway to decolonizing participatory research in the global south’, in o. mutanga (ed.), ubuntu philosophy and disabilities in sub-saharan africa, pp. 109–129, routledge, new york. mbazzi, f.b., 2024, ‘translating the ubuntu philosophy into practical disability inclusive interventions: the obuntu bulamu experience from uganda’, in o. mutanga (ed.), ubuntu philosophy and disabilities in sub-saharan africa, pp. 148–162, routledge, new york. motimele, m.r., 2024, ‘understanding “violence” within protest: a case study analysis of the rhodes must fall (rmf) movement at the university of cape town (uct), 2015–2016’, unpublished, phd thesis, university of cape town. ned, l.y., 2019, ‘reconnecting with indigenous knowledge in education: exploring possibilities for health and well-being in xhora, south africa’, unpublished, phd thesis, stellenbosch university. shandu-phetla, t., ngubane, s.a. & adigun, o.t., 2024, ‘injecting ubuntu in designing accessible virtual learning for students with disabilities’, in o. mutanga (ed.), ubuntu philosophy and disabilities in sub-saharan africa, pp. 98–108, routledge, new york. article information author: lekholokoe p. leshota1 affiliation: 1national university of lesotho, lesotho correspondence to: lekholokoe leshota postal address: po 180, roma, lesotho dates: received: 18 jul. 2012 accepted: 23 mar. 2013 published: 17 may 2013 how to cite this article: leshota, l.p., 2013, ‘reading the national disability and rehabilitation policy in the light of foucault’s technologies of power’, african journal of disability 2(1), art. #41, 7 pages. http://dx.doi.org/10.4102/ ajod.v2i1.41 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. reading the national disability and rehabilitation policy in the light of foucault’s technologies of power in this original research... open access • abstract • introduction • research methodology and framework    • disability and the welfare system       • the lesotho department of social welfare       • the ndrp foregrounded in the social model    • conflicting perspectives: social model and welfare agencies?    • assessment of needs: whose needs?    • rehabilitation of society or people with disabilities?    • rehabilitation language • ethical considerations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ in the area of disability studies, models have been at the centre of debates, influencing social policies, practices and legal frameworks. the former ministry of health and social welfare in the kingdom of lesotho was not an exception. in its efforts to tackle issues of disability, it produced the national disability and rehabilitation policy: mainstreaming persons with disabilities into society in 2011. this policy document is rooted in the social model and seeks to address long-standing problems and challenges of people with disabilities in the kingdom. using ideas from foucault, particularly the technologies and regimes of power, which work through language and practice, this article examined ways in which people with disabilities are constituted through state knowledge and government policies, and concluded that these constructions form the basis for alienation and marginalisation in society. introduction top ↑ issues surrounding disability and people with disabilities have gone through different phases of conceptualisation and re-conceptualisation by societies, from ancient to modern, in different ways and intensities. the 1970s saw a growing interest in the subject, reflected in the number of research articles and books across the spectrum of disciplines (calderbank 2000; tan 2004). the inclusion of people with disabilities into the mainstream of social life and academia changed the landscape of research on and ownership of issues of disability. this inclusion was further accompanied not only by diversification in research and advocacy on disability but also by campaigns and organisations spearheaded, run and controlled by people with disabilities (gabel & peters 2004; shakespeare & watson 1997). this has contributed to the dramatic change in perspectives on disability. the above notwithstanding, disability has remained a complex phenomenon. this complexity has been documented well (barton 1992; powell 2003) and the debates surrounding its culturally variable and highly contested nature have been appreciated (devlieger, rush & pfeiffer 2003). throughout the years, the conceptualisation of disability has been held together by the ‘passion for sameness’ at the expense of ‘love for difference’ (stiker 1999). according to stiker (1999:ix), a ‘passion for sameness’ has occasioned the segregation and marginalisation of people with disabilities and their exclusion from mainstream society. this marginalisation has been patent in how various institutions of state, particularly in developing countries, have handled the issues of disability and people with disabilities. the present article acknowledges that people with disabilities in lesotho have for years, since the foundation of disability people’s organisations (dpos), demanded a fair share in the opportunities that are afforded every citizen. but this demand has been met with a litany of broken promises which at the same time continued to construct people with disabilities as add-ons who can only be assisted when everybody else have been assisted. these constructions have influenced people’s perceptions about disability and people with disabilities and continue to do so. the policies that are formulated and their implementation are foregrounded in the perceptions that are informed by people’s constructions about disability and people with disabilities. research methodology and framework top ↑ this article is concerned with how lesotho’s former ministry of health and social welfare (mohsw), through the national disability and rehabilitation policy (ndrp) entitled mainstreaming persons with disabilities into society (mohsw 2011), constructs disability and people with disabilities through the language it employs. it is therefore a desktop study which comprises, for the most part, a review of existing published literature relating to issues of disability and people with disabilities. it examines the power valences inherent in the language used in the policy document, ministerial and departmental policies and other documents that bear on the issues under discussion. using ideas from foucault, particularly that of the technologies and regimes of power, which work through language and practice (foucault 1991; rose 1997), the article examines ways in which people with disabilities are constituted through state knowledge and government policies. disability and the welfare system globally, economic, social and political factors have influenced the development of welfare systems with the aim of examining the welfare of those citizens who do not meet the requirements of a militarily, industrially and economically viable human resource within a competing capitalist economy within countries and nations (drake 2001). social concerns such as poverty, suffering and proliferation of vulnerable groups have also played their role in the development of welfare systems. grönvik (2007:14) opines that the main task of the welfare state is to count the numbers in view of distributing support to some people, as well as providing justification for not giving it to others. it achieves that through delimiting categories of people eligible for certain grants and support through the process of assessment (swartz & schneider 2006). people with disabilities, worldwide, have always been regular clients of welfare systems. through diagnosis, labelling and ascription, which entitle them to what campbell (2003:167) calls an enumerative passport, they are rendered genuine people with disabilities through state apparatus. in that way they are classified as essentially disabled. while this may be seen by some as absolutely necessary to facilitate administration of disability through counting, it is seen by others as a re-invention of the medical model with a more sophisticated face (anderberg 2006). the lesotho department of social welfare in lesotho, the department of social welfare was first established in 1976, as a way of responding to increasing levels of poverty and other social problems (nyanguru 2003). it was first housed within the then ministries of internal affairs, justice and then employment, before being transferred, in 1993, to the ministry of health and social welfare (mohsw). according to nyanguru (2003), its six moves in 17 years are indicative of the low status afforded the department, which together with a long-standing lack of departmental policy has left its service provision fragmented, dispersed and lacking in focus. this consequently impacted negatively on the extent to which the department was able to deliver services to its intended clients. however, there are positive indications that point to a switch to improving the lot of people with disabilities. firstly, the draft national disability and rehabilitation policy of 2008 was made policy in 2011. secondly, the establishment of the new ministry of social development is a positive development and a realisation of an idea that was conceived in an effort to improve on the output of the department of social welfare. the national disability and rehabilitation policy 2011 (ndrp) read together with the draft disability and rehabilitation policy 2008 (dndrp) constitute the foci of the analysis below. the ndrp foregrounded in the social model one positive development is that the department of social welfare under the former ministry of health and social welfare spearheaded a formulation of a national disability and rehabilitation policy (ndrp 2011). this document serves as major resource in the ensuing discussions. it is a very ambitious document which serves to give direction to the delivery of services, creation of opportunities and inclusion of people with disabilities in mainstream society. in keeping with the international trends in disability, the policy aligns itself with the in-vogue social model of disability, which situates the problem away from the individual and towards society. it is further informed by the constitution of lesotho, various conventions, regional and international legal frameworks, as well as important national policies and legal structures such as the education act 1995, section 3; local government act 1997, section 5 (1) and (2); national assembly (amendment) act 2001; and children’s protection and welfare bill 2005, clause 12.the adoption of a social model marks an important theoretical and practical shift from the individualistic medical model (old paradigm) with its emphasis on diagnosis and treatment or elimination of a condition (gathiram 2008). instead it embraces a view that disability is a natural and normal part of human experience that in no way diminishes a person’s right to participate fully in all aspects of life (mohsw 2008, 2011). it works towards the elimination of the environmental, institutional, attitudinal and economic barriers that prevent people with disabilities from participating meaningfully in society (mohsw 2011). situating the policy formulation within the framework of the social model will also curb the temptation, inherent in the location of the dpos within the mohsw, to view disability as an exclusive preserve of the medical and welfare professions. the policy states clearly that disability is a human rights and developmental issue, a view that lends itself to sustainable and people-centred development (gathiram 2008). to buttress mechanisms for achieving objectives of this developmental approach, the community-based rehabilitation (cbr) strategy has been adopted, with the potential, if followed through well, to yield good results in the rehabilitation, equalisation of opportunities and social integration of people with disabilities (gathiram 2008). its community-based, participatory and action-oriented nature has made it better placed to enhance ownership, agency and accountability of programmes geared towards the integration of people with disabilities into society. mendis, kachingwe and khabele (2009:2) suggest, regarding lesotho, that with cooperation and partnership it could move towards a coherent rights-based framework, with the mohsw in a management role, the lesotho national federation of the disabled (lnfod) in advocacy and monitoring roles and local government structures in implementation roles. such cooperation and clarification of roles would also help to stem the duplication of efforts that threatens to derail the social integration of people with disabilities (mendis et al. 2009). it is the author’s opinion that even with this division of roles, people with disabilities have to participate at all levels, or at least be consulted at every stage. it would make absolutely no sense for management to conceive of ideas that are not informed by a lived experienced of people with disabilities only to be brought down to dpos for approval, implementation and monitoring. this would undermine the spirit and principle of self-representation by people with disabilities that underlies the policy. despite the positive developments evident in the tone and orientation of the disability policy, anxieties remain. gaps and rough edges of a theoretical and practical nature will always be there. these will be elaborated upon in the following sections. conflicting perspectives: social model and welfare agencies? though there is an obvious shift in perspective from the traditional medical model of disability and its paternalistic leanings in the ndrp (mohsw 2011), anxieties associated with this not-so-distant, entrenched legacy remain. this legacy shows itself in very subtle ways in the document. the issue of the provision of social services in the form of welfare and grants is conspicuous in the policy document. the latter issue has a legacy that binds it to the paternalistic and patronising attitudes that were common of the medical model of disability. the biggest challenge, therefore, is how to balance the assumptive clash in perspectives between the social model and the welfarist tendency that remains within the new policy despite the felt need to change from welfarist to developmental orientation. in fact, the new policy (mohsw 2011) has adopted a human rights and developmental approach within the framework of the social model of disability. this adoption marks an important break with not only the medical model, but also the long-standing tendency to forget people with disabilities through non-implementation of policies aimed at improving opportunities for them, only to patronise them through hand-outs and grants. the focus of the social model is to point away from an individual with impairment to the society which disables him or her through limitations imposed by the same society. it targets removal of disabling barriers and advocates equality in opportunities and rights for people with disabilities (albert 2004). in the concrete the social model advocates for removal of barriers, physical as well as attitudinal. it strives to enhance the educational opportunities of people with disabilities in order to maximise their ability and potential to compete equally with everybody else in the labour market. on the other hand, welfare agencies were founded on the realisation that citizens do not have equal access to the country’s resources. others, through no fault of their own, are vulnerable, poor and marginalised and therefore in need of some form of grant. if provision of social grants for individuals with disabilities, and who have been declared so through appropriate assessment procedures, is at the centre of machinations of the welfare state, the question is: how can this stance be reconciled with the social model stance which locates oppression in society and not in the individual? in other words, can the developmental approach, which aims at breaking economic dependency of people with disabilities (gathiram 2008), be reconciled with a service-based approach, which creates the same dependency it intends to break from? the dndrp (mohsw 2008:16) recognises this theoretical quandary: ‘there is a need therefore for government to provide social protection and disability grant to [people with disabilities] … changing the way people regard disability from a purely health and welfare issue to a primarily human rights and development issue has significant implications for the principles, objectives and goals of existing welfare services. it implies that welfare services need to be designed to facilitate independence in society, rather than dependence on welfare services’. could this indicate that the policy is tending towards adoption of a model that combines social security with social and community development in line with international disability policy, where the focus has shifted from guaranteed income security towards economic integration (mont 2004)? it appears that the policy balances theoretical considerations and pragmatic concerns. within the framework of a social model, in which disability is seen more as a human right and developmental issue than an individual issue (swartz & schneider 2006), skills provision and creation of job opportunities are more important than disability grants. for disability activists the catchphrase is ‘human dignity and not separate services’. swartz and schneider (2006:236) concur that the social model is founded on the assumption of a society that is as equal as possible for all. however, given gross poverty, inequality, inequitable distributions of resources, lack of skill development as well as high unemployment rates in lesotho, application of a social model with a focus on creation of equal opportunities alone becomes a mammoth task. a stark reality to contend with is that people with disabilities invariably bear the brunt of these adverse consequences and would therefore, at some point, need social services in the form of grants. assessment of needs: whose needs? the policy further foresees the need for the establishment of a multidisciplinary assessment team. the issue of assessment as regards people with disabilities has been regarded as given. the underlying assumption has always been that before a person can be said to qualify as authentically disabled some kind of a mechanism should be established to justify the selection of some and the rejection of others. the issue of an assessment of needs therefore is in order here. the true question is, however: whose needs?as noted above, disability is a fluid concept. its definition is dependent on who is attempting it and for what purpose. the department of social welfare in lesotho was founded with the purpose of attending to poverty and other social problems. that people with disabilities’ concerns are taken care of within this department suggest that disability is an issue that is in one way or the other associated with poverty or viewed as a social problem. lesotho is rated among the poorest economies with high rates of unemployment and poverty, as well as differential access to resources (may et al. 2002). although these needs are of a general nature, affecting the whole society, people with disabilities feel most the effects of poverty and marginal opportunities in the labour market. under these circumstances, their reasonable option is to wait for disability grants, but this is not as simple as identifying oneself as such and then receiving it. rather, it involves a normal welfare process of diagnosis, normally referred to as ‘assessment’, which seeks to answer the question whether an individual qualifies to be categorised as disabled, and therefore deserving of a welfare benefit or disability grant (swartz & schneider 2006). looked at very closely, the diagnostic assessment goes beyond serving only as a mechanism that helps administrators to distinguish ability from disability. however, the assessment cannot be made without an assessment tool, otherwise such an assessment would depend on the whims of the person in office. developing such a tool raises questions: would the development of such a tool depend on the state of being of a person with disability or on the complex and changing environment (swartz & schneider 2006)? who would have the last word on the development of such a tool and the criteria adopted in administratively identifying a person as disabled and therefore deserving of a disability grant? whose needs are met by the development of such an assessment tool: the welfare authorities or people with disabilities? the assessment tools are developed to ascertain the correctness of the decisions made about the welfare systems’ classification of ability and disability, so their purpose is to describe and classify. assessment is also about constructing that which is described and classified, but classification also leads to apprehensions about who qualifies and who does not. perhaps even more sensitive is the issue of who has the final say on who qualifies for a grant and who does not, on the basis of which norm is applied (soudien & baxen 2006). this sensitivity has to be understood in the light of the sentiment expressed by many people with disabilities and dpos that projects are often written in their name but they are the last to enjoy the benefits. this sentiment, whether real or unreal, is an issue of power relations and justice, and calls for the re-examination of the kind of ethics that drive the interaction. it calls for a review of power valences that create the hierarchy between ‘us’ and ‘them’, with the ‘us’ responsible for the setting of norms and standards, and for the administration of disability grants. the ‘them’, meanwhile, can only be thankful or else they are dubbed ‘ungrateful’. the tendency is nearly always to assume that the needs served are clearly those of people with disabilities, but this is not the case. there are two kinds of need here: those of the welfare authorities and those of people with disabilities. the welfare authority is interested in the proper administration of a welfare benefit, which can only be ascertained through an assessment procedure. a person with disability would like to be acknowledged as such and given his or her due. these needs do not have to clash, but they often do, and the people with disabilities usually benefit the least, if at all. through this procedure a person is labelled ‘administratively disabled’, which becomes a need that can be met by a welfare authority. thomas and loxley (2001:52) regard this case as one in which a welfare authority, ‘with a stroke of a wand’, is changed from assessor and labeller to benefactor and helper. not only is there a change of roles but also a play of power valences, the effects of which are ‘hierarchizing, and forever, pushing x above y’ (thomas & loxley 2001:84). what foucault (1991:308) terms a ‘disciplinary regime’ permeates ‘almost seamlessly and unquestionably the day to day workings of institutional life of people with disabilities’. the ndrp does not yet have an answer to many of the above questions, but anticipates guidelines that would provide for the assessment of those who do and do not qualify for a social security grant. rehabilitation of society or people with disabilities? community-based rehabilitation is adopted as a key strategy in achieving the objectives of the ndrp. though a tested strategy, especially within the health sector, its relevance and appropriateness within the context of a socially oriented policy on disability still needs to be run through. the adoption of the language of rehabilitation within the policy is quite problematic and needs to be teased out. the questions that guide our reflection in this section are: what does rehabilitation mean? who or what needs rehabilitation? who does the rehabilitation and who stands to benefit from such an exercise? are rehabilitation practices not a reconstitution of old discourses to resecure another centre from which to advance coercive practices in the government of disability? rehabilitation language the ndrp is replete with references to rehabilitation as an important modus operandi in addressing the plight of people with disabilities. the term ‘rehabilitation’, lexically, implies a return to a point or to a prior situation. stiker (1999:122) suggests that this is the situation that existed for the able, but one postulated for the others. the whole understanding is premised on the centre, on the norm which has to be re-inhabited through the process of rehabilitation. this way of thinking can be likened to a traditional catholic image of stages toward heaven, as represented in figure 1. figure 1: heavenward stages. the above diagram has three distinct stages. the first is life on earth, distinguished by its ephemeral nature, ambiguity and imperfection. in the middle is the stage of purgation (purgatory), a liminal stage where all dirt is eliminated before final incorporation or integration into the third stage, namely heaven. the latter represent the ideal, the norm and perfection in its purest sense. following upon this analogy, people with disabilities represent an imperfect humanity, in its physical and moral sense, which has to go through some form of purgation (rehabilitation) before they can be included into mainstream society. according to stiker (1999:136), this mainstream society sees itself as having the duty, mission and task of voiding disparities into its norm. disability, according to this analogy, is sustained by the desire to flee from itself towards the mainstream. until such a desire is fulfilled, disability cannot rest. if this is the understanding, as implied in the policy, then disability will forever remain the ‘different’ and the ‘alterity’ that must disappear (stiker 1999:xii).the language of rehabilitation is associated with the medical model of disability, stemming from the hospital (stiker 1999). the adoption of the rehabilitation language within the ndrp, consciously situated within the social model, the new paradigm, is evidence of this medical shadow and the dominance of the medical model. despite the intent to shift perspectives and nuances, the link between rehabilitation services and medicine is so glaring that any effort to divorce them becomes a futile exercise. the rehabilitation model as a substitute appellation for the medical model betrays this tendency. the trouble in shifting from one paradigm to the other is evident in this policy, and could create conceptualisation problems that are often part of working with and within models and paradigms. it begs the question as to whether one is working within the ‘new paradigm’ but with nostalgia for the ‘old paradigm’. the policy defines rehabilitation as a means to help people with disabilities to fully participate as members of society (mohsw 2008, 2011). one cannot fail to see the common power implications of helper (powerful) and helpee (vulnerable), doctor (powerful) and patient (vulnerable), which have been a subject of intense debate in the field of modern therapy (van wyk 2007). reading the definition of rehabilitation together with the objectives of rehabilitation as a priority policy area (mohsw 2011), it becomes clear that the focus of rehabilitation is not society but people with disabilities. the objectives of rehabilitation are stated as promoting availability of the necessary skills and services to all people with disabilities, and enabling them to achieve and maintain their optimum physical, sensory and functional level. nowhere under the objectives of rehabilitation is mention made of society as the object of the rehabilitation services. it is indisputable, therefore, that rehabilitation services are directed to people with disabilities, and that their accessibility and availability are made possible by the presence of rehabilitation professionals at all levels. mcnamee (1996:145) uses the term ‘identity adjustment’ – which is what the medical model seeks to achieve – to refer to the process of rehabilitation. this use of words evokes the relations of power between the rehabilitation service provider, who is skilled and equipped, and a person with disability, who is portrayed as lacking in something that must be filled by professional medical personnel (stiker 1999). this does not seem to square up well with the social model of disability. one of the objectives of rehabilitation as spelled out by the policy is to ‘enable [people with disabilities] to achieve and maintain their optimum physical, sensory, and social functional level’ (mohsw 2011:6). the word ‘achieve’, used together with ‘optimum’, has a sense of ‘not yet there’. what would be the ‘not yet there’ compared to the present condition? is it not suggestive of the undesirable state of disability compared to the desirable state of optimum physical, sensory and social functional level? on what basis does one measure that optimum and functional level, and who determines the achievement of that functional level? it evokes memories of the ideal, the normal into which the promise to restore an individual with disabilities comes alive. is the promise to restore an individual to the ideal not a reassertion of the binaries of abnormal and normal? if answering in the positive, as i think i should, the binary logic harbours workings of power. it is founded on the moral and political hierarchy of the normal over the abnormal. this hierarchy, as danforth and rhodes (1997:359) assert, can be seen in the way the abundant social value accorded the first term is negatively mirrored in the corresponding devaluation of the second term. by embracing this form of a rehabilitation discourse one is not far from the discourses of the late eighteenth and nineteenth centuries, in which restoring disabled people to a level of acceptable functionality was achieved through educational facilities and medical correction and technology (stiker 1999). the definition of disability in the ndrp only helps to entrench this nostalgia. it further underlines power valences between people with disabilities and rehabilitation professionals through the language used (stiker 1999). rehabilitation represents the medical gaze, as an eye of surveillance with immense power and an exclusive claim to knowledge, watching over and controlling people with disabilities (foucault 1978). in the view of oliver (1990), that is not appropriate because disability is not a medical condition but a social state, but i argue that it may not be necessary to pit one against the other in an either/or dichotomy. read within a postmodern context, disability surpasses the social medical dichotomy and represents a complex and contingent variable that ‘describe[s] different aspects of a single experience’ (shakespeare & watson 2002:24). care has to be taken therefore that the rehabilitation strategy embraced by the ndrp does not become a way of carting off the oppressive conditions of the medical model of disability through the front door only to bring them back through the back door. however, this is not to suggest that people with disabilities do not have medical needs, but rather that the situation of a rehabilitative language, which insinuates the medical model, within the social model of disability is problematic. at issue here is whether there is a role for rehabilitation language and practice within the social model of disability. if, according to the social model, society has to change and not individuals, why should the language and practice of rehabilitation that target people with disabilities be dominant in a policy that adopts the social model as its guidepost? perhaps, as derrida (1976) would have suggested, we should put the word ‘rehabilitation’ under erasure to underline both its necessity and its inadequacy. the ministry of health and social welfare, through its national disability and rehabilitation policy 2011, straddles two paradigms, having adopted the social model with its one foot in the deficit and medical model. in the process, people with disabilities are constructed as ambiguous. within the context of this research there is no intention to pit one model against the other, as both have their usefulness. the above discussion on the discourses within the ministry of health and social welfare in lesotho reflects what in liberation theology is termed ‘social analysis’ (lartey 2003:127). the aim is to explore ways in which power relations within different public institutions in lesotho hold sway over the human person, particularly one with disability. ethical considerations top ↑ as this article is a desk top critical reading of a policy document, the author did not have to do interviews which would have required ethical clearance. the views that are expressed are, therefore, the author’s own unless otherwise stated. conclusion top ↑ contesting notions and models of disability, informed by different theoretical underpinnings, have been at the centre of debates surrounding issues of disability. they have become a powerful force influencing social policies, practices and legal frameworks (dewsbury et al. 2004). the above discussion has examined the extent to which government machinery, particularly in the ministry of health and social welfare, is influenced, in a disabling or enabling way, by these models.the constitution of lesotho identifies the needs of people with disability as rehabilitation and resettlement (lesotho government 1993). it therefore identifies and constructs people with disabilities as ‘abnormal’ and in need of regularisation before they can be accepted into the fold of ‘the normal’. the mohsw, through its ndrp, embedded in the social model, puts people with disabilities at the mercy of professionals and medical experts. the nature of the language adopted and used without critique, specifically in the ndrp, has further constructed people with disabilities as institutional subjects whose lives depend on the policies, laws and protocols of the powerful. through the use of foucault’s ideas of governmentality and power, this paper has explored how policies and laws connive to create social meanings and power relations through language and models. foucault’s ideas have served to unwind the structural composition of the ministry of health and social welfare as a public institution in terms of power relations. power and knowledge combined in how health and welfare contributed to the construction of ambiguous but objectified disabled identities. foucault’s ideas have also revealed that disability is sustained by social practices which serve the interest of dominant groups in society (burr 2003), through constructing people with disabilities into ‘particular and shifting forms of objectification’ (jolly 2003:517). acknowledgements top ↑ the author would like to thank prof. francina moloi for sparing her time to go through this article and for the invaluable suggestions she made. furthermore, at the time of the writing of this article the present ministries of health and of social development of the kingdom of lesotho were both under the ministry of health and social welfare. the draft national disability and rehabilitation policy as well as the national disability and rehabilitation policy 2011 are products of the then ministry of health and social welfare. since the may 2012 elections things have changed. the new ministry of social development takes care of, amongst others, issues of disability and rehabilitation, which form the main content of the document under scrutiny. competing interests the author 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about the author(s) faheema mahomed-asmail department of speech language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa louise metcalfe department of speech language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa marien a. graham department of early childhood education, faculty of education, university of pretoria, pretoria, south africa renata eccles department of speech language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa citation mahomed-asmail, f., metcalfe, l., graham, m.a. & eccles, r., 2025, ‘factors influencing person-centred care: speech-language pathologists and audiologists perspective’, african journal of disability 14(0), a1589. https://doi.org/10.4102/ajod.v14i0.1589 note: additional supporting information may be found in the online version of this article as online appendix 1 and appendix 2. original research factors influencing person-centred care: speech-language pathologists and audiologists perspective faheema mahomed-asmail, louise metcalfe, marien a. graham, renata eccles received: 03 oct. 2024; accepted: 05 feb. 2025; published: 25 mar. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: person-centred care (pcc) is a fundamental aspect of healthcare, and its implementation is primarily based on clinicians’ initiation and sustained efforts and the availability of resources. recent pcc literature has primarily focused on high-income settings, raising concerns about the feasibility of pcc implementation in lowand middle-income countries. objectives: this study examined speech-language pathologists’ (slps) and audiologists’ (auds) perceptions of barriers and facilitators towards implementing pcc in the diverse south african context, particularly how their demographic factors influence these perceptions. method: a national cross-sectional e-survey pooled 103 clinicians who were providing speech-language pathology and audiological services in south africa. the e-survey included questions on participants’ demographics, working environment and a seven-point likert scale rating 10 components that influence pcc. results: clinicians scored personal factors (64.7%), followed by their relationships with different professionals (54.9%) as the most facilitating factors for achieving pcc. the most significant perceived barrier was resources, including time and finances (59.8%), followed by the client perspectives (53.9%). significant associations were found between the components influencing pcc and clinicians’ qualifications, work sectors and populations served. conclusion: the collective findings of this study highlighted the multifaceted nature of pcc implementation within a diverse healthcare context. client perspectives need to be considered while leveraging clinician attributes and fostering supportive workplace environments for the successful adoption of pcc. contribution: this study contributes to literature of pcc implementation and has captured how the perceptions of speech-language therapists (slps) and auds call for tailored approaches in diverse healthcare contexts. keywords: person-centred care; socioeconomically diverse; facilitators; barriers; speech-language pathology; audiology. introduction person-centred care (pcc) is a concept that describes a model of care that changes the role of the client within the healthcare system. person-centred care is the shift from a traditional biomedical model to a biopsychosocial model where more equitable power roles between clients and clinicians exist (american geriatrics society expert panel on person-centred care 2016). this results in management that is tailored to clients and, as such, has functional benefits to their lives (byrne, baldwin & harvey 2020). this shift is a global movement in response to the acknowledged improvement in safety and quality of service delivery for clients, clinicians and larger communities when pcc is implemented (engle et al. 2021). specific benefits of adopting a pcc approach include improved access to care, health literacy and higher client and staff satisfaction (world health organization [who] 2016). however, the implementation of pcc is dependent on various factors, including clinician, client and environmental factors (danermark 2014). among the key considerations in pcc is its role in addressing the needs of individuals with disabilities, who often face barriers to equitable healthcare access (wakeham et al. 2017). person-centred care emphasises tailoring services to individual needs, which is particularly relevant for people with disabilities, as it promotes inclusivity, shared decision-making and the provision of care that considers their functional abilities and social contexts (who 2016). although a collaborative model with clients, pcc initiation, implementation and adherence are dependent on the efforts of clinicians providing healthcare services. identified clinician-specific factors that facilitate the delivery of pcc-related services include training and education, access to measurement and evaluation tools and supportive work environments for health professionals (levey et al. 2019; mahomed-asmail et al. 2024; moore et al. 2016). clinicians providing healthcare services have mentioned that variations in what is considered pcc are a perceived barrier to its implementation (forsgren, åke & saldert 2022; grenness et al. 2014; moore et al. 2016). person-centred care is regarded by clinicians as challenging to define and implement, especially in diverse and demanding contexts (cooper, smith & hancock 2008; grenness et al. 2014; stewart et al. 2013). definitions exist, including an approach that respects clients’ preferences and values, involves family and friends, reinforces shared decision-making and goal setting and prioritises information exchanges (person-centred hearing network n.d.). there is, however, currently no universally accepted definition that leaves the concept open to interpretation by those tasked with implementing it, namely clinicians, management structures and policymakers (byrne et al. 2020). additional reported barriers that impede implementation are clinicians’ and professional team members’ adherence to the traditional biomedical model of care as well as clinicians’ own personal beliefs, values and culture (bolster & manias 2010; choy-brown 2021; manchaiah et al. 2014; moore et al. 2016; sladdin et al. 2017). time has also been noted to limit clinicians’ capacity to implement pcc. following a pcc approach is typically time intensive to allow clinicians to get to know their clients and determine specific needs and requirements (gluyas 2015; singh et al. 2017). current billing systems do not always cover the extended time spent with clients (choy-brown 2021). this situation gives rise to conflicts between financial interests and clients’ optimal well-being, as healthcare services, especially in the private sector, operate more as business entities (choy-brown 2021). limited time and capacity further impact the development of the therapeutic alliance between clinician and client. this component is essential for breaking down traditional and preconceived power roles within the dyadic relationship (beck & kulzer 2018). across current pcc research, high-income settings have been the primary focus, raising questions about the feasibility of its implementation in lowand middle-income countries (lmics). in lmics like south africa, clinicians have to overcome additional challenges that are rare in high-income settings when delivering services. an example of the complex challenges in south africa is the quadruple burden of disease (qbd) – a multidimensional challenge arising from biological, environmental and economic factors (black et al. 2017). the qbd includes a range of health issues prevalent in south africa, such as human immunodeficiency virus/acquired immunodeficiency syndrome (hiv/aids), tuberculosis, violence, injury, maternal and child health and the surge of non-communicable diseases (basu 2018). this adds additional pressure to an already complex socioeconomic and culturally diverse landscape. as a result, healthcare clinicians’ focus is not on implementing a pcc approach but managing clients’ health, access and safety. a recent investigation by mahomed-asmail et al. (2023) found that south african clinicians have a high preference towards person centredness. as part of a broader project investigating pcc implementation in south africa, the qualitative component of this research (mahomed-asmail et al. 2024) revealed that clinicians perceive sociodemographic factors – particularly language and cultural diversity, as well as resource constraints – as significant barriers to pcc. these findings highlight the need to further explore how such factors influence clinicians’ ability to adopt pcc in practice. building on this qualitative work, this article aimed to answer the following questions: how do speech-language pathologists and audiologists perceive the barriers and facilitators to implementing person-centred care (pcc) in the diverse south african context, and how do their demographic factors influence these perceptions? method study design and participants the study employed a cross-sectional survey design (wisdom & creswell 2013) and followed the checklist for reporting of survey studies (cross) (online appendix 1) (sharma et al. 2021). a part of the larger project, an e-survey (online appendix 2) was distributed to registered communication-related healthcare practitioners providing speech-language pathology and/or audiology services in south africa, including audiologists (auds), speech-language pathologists (slps), dually qualified slps and auds and acousticians. a convenience sampling method was used, whereby the survey was distributed through online social media platforms (facebook™, linkedin™, whatsapp™), professional associations (south african speech language and hearing association, south african association of audiologists) and by forwarding to the researchers’ networks of colleagues and collaborators practising in south africa (mahomed-asmail et al. 2024). instrument and procedures the e-survey was made available to participants using qualtrics™ (provo, ut) for 3 weeks between october and november 2022. the e-survey was set up to allow only one attempt. it consisted of (1) biographic information, (2) a 7-point likert scale to rate 10 components relating to possible barriers and facilitators involved in providing pcc (adapted from danermark 2014) and (3) four open-ended questions further probing their perspectives. results from the third section are not included in this article because of the quantitative nature and depth of analysis; the findings have been published in a parallel publication (mahomed-asmail et al. 2024). the demographic section of the e-survey collected data on age, sex, current profession, number of years working in the field, employee position, work sector (public, private or academic) and the linguistic and culture background of both clinician and their clients served. section two followed with 10 components related to barriers and facilitators clinicians face towards pcc. the 10 components were developed by danermark based on literature and surveyed clinicians’ experiences (danermark 2014). the barrier and facilitator factors detailed as part of the 10 components include personal (clinician-related), client perspectives, staff knowledge, workplace culture, resources, tools, relationships between different professions, regulations/rules, management and sales focus (online appendix 2). in order to ensure validity and reliability, pilot testing of the e-survey was conducted with five clinicians (one academic, one aud practising in private, one in the public sector, one speech-language therapist (slt) in private and one in the public sector). the survey was electronically shared with the five clinicians who completed the survey and provided feedback on aspects that need to be adjusted to improve the clarity and understanding of the survey. based on the feedback, definitions for each of the 10 components were adjusted to provide participants with better insight into each component. the likert scale was also expanded from a 5-point likert scale (a hinder and help scale ‘help++’, ‘hinder--’) (danermark 2014) to a modified 7-point likert scale, ranging from 1 (extreme barrier) to 7 (extreme facilitator). the same five clinicians were then asked to review the amended survey and provide any additional feedback, of which there was none. data analysis the data were analysed with the statistical package for social sciences (spss v.27.0) using descriptive and inferential statistics. descriptive statistics, including frequency distributions and percentages, were used to summarise the data. after investigating the frequency distributions of data collected from section 2 of the survey, it was decided to collapse the categories of the 7-point likert scale back to a 5-point likert scale because of sparse data in many of the categories. for cross-tabulations of nominal variables (with three or more categories), the independent columns proportions z-test was applied to detect significant differences between the categories of a variable (columns) in terms of participants’ perspectives of barriers and facilitators (rows). for example, when exploring the differences in the perspectives between (1) auds, (2) slps and (3) dually qualified clinicians, for a specific perspective (e.g. item is viewed to be an extreme barrier), the proportions z-test compared the responses between these categories, thus producing three p-values for these three pairwise comparisons. if the p-value was less than 0.05, the responses differed significantly between the pair being compared. correlations were also run, with spearman correlation (rs), when two variables were ordinal and the point-biserial correlation (rpb) when one variable was binary and the other ordinal. as an example of rs, clinicians’ age (ordinal) and whether tools were seen as a barrier or facilitator. if the correlation was negative, then the older clinicians (higher age) tended to view tools as a barrier (lower end of likert scale) and, if positive, the older the clinician (higher age) tended to view tools as a facilitator (upper end of likert scale). as an example of rpb, clinicians’ home language (binary, 0 = english, 1 = other) and tools. if the correlation was negative, then english-speaking clinicians (coded lowest) viewed tools more as a facilitator (higher end of likert scale) and, if positive, english-speaking clinicians (coded lowest) viewed tools more as a barrier (lower end of likert scale). ethical considerations the study received ethical approval from the institutional research board, research ethics committee (resethics), faculty of humanities, university of pretoria (no. hum024/0422). participants provided written informed consent prior to completing the e-survey, and no identifying information was collected in order to ensure anonymity. results participant demographics a total of 127 surveys were initially collected. after excluding responses lacking consent or those incomplete despite consent, 103 responses were retained. the removal of surveys with incomplete data was necessary as those respondents exited the survey prematurely, leaving substantial sections unanswered. of the 103 responses, 91.3% were females and 42.7% were auds (table 1). only one acoustician participated, and the data collected from this submission were included under the aud category because of sparsity. a few participants (14.6%) were based in academia and were involved in research, clinical training/supervision or teaching, with some participants completing their postgraduate studies full time. table 1: participants’ demographics and client population served (n = 103). most participants were between the ages of 26 and 35 years (35.0%), with just over half practising in the private sector (50.5%). the majority of clinicians’ daily caseload ranged between 6 and 10 clients (48.6%), seen predominantly as outpatients. the majority of the clinicians (60.2%) and their clients (61.2%) indicated english was not their home language, but rather one of the other 11 south african official languages, with afrikaans being the most common home language of clinicians (48.5%) and clients (27.2%) followed by isizulu for clients (12.6%). participants also indicated that their language (49.5%) and culture (32.0%) typically sometimes matched those of their clients. the number of clients seen daily, the home language and culture of the clinicians and the culture and language of clients showed no significant associations across the various factors. more than half (59.2%) of the participants indicated that they followed a pcc approach to service delivery. facilitators of person-centred care participating clinicians identified their personal factors (64.7%) as the most facilitating component to implementing pcc, followed by their relationships with different professionals (54.9%) (figure 1). figure 1: perceived facilitators and barriers towards person-centred care. point-biserial correlations showed that participants working in academia tended to view client perspectives (rpb = 0.20, p = 0.039) and workplace culture (rpb = 0.28, p = 0.004) significantly more as facilitators than barriers (table 2). clinicians who predominantly worked with adult populations significantly identified sales as a facilitator rather than a barrier (19–65 years, rpb = 0.25, p = 0.011). on the other hand, clinicians serving young clients (0–5 years) only had one significant correlation when considering all 10 factors; they perceived tools significantly more as a facilitator than a barrier (rpb = 0.21, p = 0.030). table 2: seven of the factors with correlations to demographic variables. barriers towards person-centred care the most significant perceived barrier was resources, which included time and finances (59.8%), followed by client perspectives (53.9%). the proportions z-test revealed that auds perceived client perspectives as ‘somewhat a barrier’ (62.8%) significantly more than slps (26.5%, z = 2.807, p = 0.005) and dually qualified participants (16.0%, z = 3.291, p = 0.001). dually qualified practitioners indicated regulations and rules as ‘somewhat a barrier’ (40.0%) significantly more than slps (29.4%, z = 2.005, p = 0.045) but not significantly more than auds (37.2%, z = 0.000, p = 1.000). point-biserial correlations showed that participants from the public sector tended to perceive client perspectives (rpb = −0.20, p = 0.047) and resources (rpb = −0.31, p = 0.002) significantly more as barriers rather than facilitators (table 2). older participants (rpb = −0.22, p = 0.025) and participants with less experience (rpb = −0.25, p = 0.011) identified rules and regulations significantly more as barriers rather than facilitators. when considering clients served, clinicians who indicated they served adults perceived client perspectives (19–65 years, rpb = −0.21, p = 0.036; > 65 years, rpb = −0.26, p = 0.007), workplace culture (19–65 years, rpb = −0.27, p = 0.005; > 65 years, rpb = −0.30, p = 0.002), resources (> 65 years, rpb = −0.27, p = 0.007) and management (19–65 years, rpb = −0.22, p = 0.026) significantly more as barriers than facilitators. discussion the present study provides an exploration of the perceptions of slps and auds in south africa regarding the facilitators and barriers associated with implementing pcc and the influence demographic factors had on these perceptions. the diverse sample of 103 clinicians, predominantly females (94.0%), shed light on factors influencing the delivery of pcc in a socioeconomically and linguistically diverse setting faced with the qbd. more than half of the respondents (59.2%) indicated their adherence to a pcc approach in service delivery, despite possible challenges to implementation, including that their home language and cultural background did not consistently align with those of their clients. the mismatch between clinician and client language and culture was a reported concern by clinicians (mahomed-asmail et al. 2024); however, contrary to expectations, there were no statistically significant associations found between home language, culture and the 10 components examined in this study. an association was expected, given the acknowledged and reported influence that cultural, linguistic and socioeconomic disparities can have on pcc implementation (anderson et al. 2003; mahomed-asmail et al. 2023, 2024). clinicians’ motivation to adopt a pcc approach in their service delivery has been substantiated by prior research (bellon-harn et al. 2017; laplante-lévesque et al. 2014; mahomed-asmail et al. 2023, 2024). consistent with this premise, clinicians’ personal factors emerged as the most influential facilitator of pcc implementation. these personal factors encompassed the clinicians’ passion, commitment, vision, courage and perseverance (danermark 2014), all of which are integral clinical attributes facilitating an understanding of clients’ emotional states, individual needs and readiness for change. these attributes foster a supportive environment that ensures a collaborative decision-making process (ekberg, grenness & hickson 2014; english 2022 grenness et al. 2014; moore et al. 2016). surprisingly, the reported adherence to providing pcc was not significantly associated with personal factors. clinician-related variables such as age and years of experience were, however, a significant influence on clinicians’ perceptions of rules and regulations, encompassing protocols, legislation, regulations, practice guidelines, position statements and standards. older participants (> 46 years) and those with limited experience (< 25 years) identified rules and regulations as a substantial barrier to pcc, which are in line with their qualitative responses (mahomed-asmail et al. 2024). this phenomenon may arise from younger and older clinicians, those with less and more experience, respectively, grappling with the tension between what they ‘should’ do and what they ‘must’ do, underscoring their constrained autonomy to practise pcc within the confines of the established system standards (byrne et al. 2020). notably, a significant association was also observed between dually qualified clinicians and their views of rules and regulations. this association can likely be attributed to the requirement for dually qualified clinicians to navigate and provide services within the frameworks of two distinct scopes of practice (health professional council of south africa [hpcsa] 2011, 2017). in a recent review by byrne et al. (2020), the theme of ‘the power to practise pcc’ emerged as a significant element within the field of nursing. this theme encompassed various factors, including workplace culture, leadership, policy and practice, organisational systems, environmental workload and ward culture, which either facilitated or hindered the implementation of pcc (byrne et al. 2020). when assessing workplace culture and management in this study, clinicians’ perceptions were evenly divided, with both aspects receiving slightly more positive evaluations than negative ones, particularly among academics, who regarded workplace culture as a significant facilitator for pcc implementation. academics also contributed to a heightened awareness of the evolving healthcare landscape that is increasingly oriented towards the principles of pcc (fernandes et al. 2022; who 2015). academic clinicians’ perspectives may also be attributed to their ability to have extended interactions with clients, related to guiding student learning. the opportunity to interact with clients for longer may have also contributed to academics experiencing client perspectives as a facilitator of pcc. there is extensive discourse in the healthcare literature surrounding the concept of power balance, which encompasses various fundamental components. a critical aspect of this balance is the active engagement of clients in the care process (castro et al. 2016; english 2022; kitson et al. 2013; lusk & fater 2013). the perspective of clients was identified as a significant barrier by participating clinicians. client perspectives encompass a multifaceted array of factors, including variations in educational backgrounds, language barriers, scepticism towards the medical healthcare system, sensitivity to specific healthcare issues, adherence to cultural taboos and alignment with traditional customs (southwood & van dulm 2015). audiologists more frequently rated client perspectives as a significant barrier as compared to slts, possibly because of the client population they serve. individuals with hearing loss often contend with stigma associated with hearing loss and hearing devices and often demonstrate limited enthusiasm for engaging in their healthcare, including the acquisition and utilisation of devices (ruusuvuori et al. 2019). notably, audiology demands a tailored approach to fitting technology to clients’ audiological and lifestyle requirements (timmer et al. 2023). in contrast, speech-language pathology follows a more iterative approach along an intervention continuum (alighieri et al. 2022; zebrowski et al. 2021), which may contribute to the differences in the perceived importance of client perspectives between these two healthcare professions. person-centred care is time intensive and requires clinicians to dedicate more time to understanding their clients’ specific needs and requirements (bennett et al. 2021; gluyas 2015). this was reflected in the responses of the participants, specifically those in the public sector and those working with geriatric populations (adult clients aged > 65 years old), where the scarcity of resources, including time and finances, was identified as a significant challenge to implementing pcc. the public sector often grapples with high client loads and inadequate financial government support, which adversely affect their capacity to deliver comprehensive pcc (bhamjee et al. 2022; khoza-shangase & mophosho 2021). participants working with geriatric populations may experience resources as a barrier to pcc because they are working with a population that no longer earns an income but has growing medical and health-related needs that require financial resources (souchon et al. 2020). additionally, adults in general have more capacity to play an active role in determining the approach to their care than paediatric populations, which may explain why client perspectives were also identified as a barrier to pcc for clinicians treating geriatric populations. interestingly, the availability of tools was noted as a barrier by most participants but was associated as a significant facilitator for clinicians working with paediatric populations. resources for younger populations from diverse backgrounds are more readily available in south africa than for geriatric client populations because of the push from government sectors to encourage early childhood development for improved long-term outcomes (national planning commission 2012). for clinicians managing adult populations in general (19 years and older), workplace and management factors may present as barriers to pcc because of the contexts where they receive services. adult populations are typically seen in hospital settings where management protocols and the areas that clients are seen in, for example, open wards, may restrict clinicians’ abilities to implement a pcc approach (moore et al. 2016). sales may also act as a barrier to pcc more so for adult populations than paediatric populations because of the acknowledged bias of individuals to be willing to incur costs for their children rather than for themselves (dickie & messman 2004; monheit, grafova & kumar 2020). it is evident that the personal attributes of clinicians play a vital role in fostering pcc, while age and experience influence perceptions of regulatory challenges. the time-intensive nature of pcc, coupled with resource constraints, however, poses significant challenges, especially in the public sector. client perspectives also emerged as a critical barrier, with distinct challenges faced by auds. these findings collectively emphasise the multifaceted nature of pcc implementation in diverse healthcare contexts, underscoring the importance of addressing client perspectives while leveraging clinician attributes and fostering supportive workplace environments to adopt pcc successfully. such insights into the facilitators and barriers faced by slps and auds serve as a self-reflection for clinicians, which may foster collaboration towards more effective and equitable care delivery. this introspection and acknowledgement may catalyse policy and systems changes for speech-language pathology and audiology, promoting equity and diversity in lmics. this study, however, has certain limitations. before data collection, the likert scale was expanded to 7 points, but because of the sparse data, categories collapsed back to a 5-point scale during data analysis. we acknowledge that although this could result in a loss of granularity in the data, for meaningful interpretation, it was important to ensure that the frequencies in the cells were not sparse (field 2018). another limitation is that the response rate was low (103/4194 = 2.5%), with the population size (4194) consisting of 1566 dually qualified clinicians (37.3%), 1548 slps (36.9%) and 1080 auds (25.8%) (hearing and acoustician professionals included), registered with the hpcsa. low response rates for e-surveys are common and attributed to various reasons, including the rise of online surveys and information requests overwhelming respondents causing them to ignore the requests (koen et al. 2018). furthermore, future research should endeavour to gather more responses from clinicians in the public sector, as almost half of the respondents in this study were from the private sector. clinicians working in public healthcare facilities experience additional factors, both facilitators and barriers, which can influence the application of a pcc approach (khoza-shangase & mophosho 2018; maphumulo & bhengu 2019). conclusion this study explored the perceptions of south african slps and auds on implementing pcc. clinicians’ attributes, notably age and experience, play a crucial role in fostering pcc. however, challenges arise because of the time-intensive nature of pcc and resource constraints, especially in the public sector. these findings emphasise the complex landscape of pcc implementation and the need for tailored approaches in diverse healthcare contexts. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions f.m.a. conceptualised the original idea. f.m.a. and l.m. carried out the experiment. m.a.g. conducted the analysis. f.m.a. and r.e. wrote the manuscript with support from m.a.g. funding information the authors acknowledge the financial support of the university capacity development programme and the nrf research development grants for y-rated researchers (137794). the funders had no role in the study design, data collection and analysis, decision to publish or preparation of the manuscript. data availability the data that support the findings of this study are available on request from the corresponding author, f.m-a. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional 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faculty of law, university of pretoria, pretoria, south africa citation bornman, j. & msipa, d., 2024, ‘accommodating persons with communication disabilities in court: perspectives of law students’, african journal of disability 13(0), a1385. https://doi.org/10.4102/ajod.v13i0.1385 original research accommodating persons with communication disabilities in court: perspectives of law students juan bornman, dianah msipa received: 27 nov. 2023; accepted: 21 may 2024; published: 08 july 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: individuals with communication disabilities encounter obstacles in attaining equal access to justice compared to others. despite experiencing widespread violence and abuse, they come across as challenges in seeking remedies through the legal system. one barrier is the lack of awareness among legal practitioners regarding suitable accommodations that would facilitate effective participation in court for individuals with communication disabilities. objectives: this study explores the awareness of final-year law students concerning court accommodations available for individuals with communication disabilities, allowing them to testify in a south african court. the findings can serve as inspiration for expanding the current curriculum for law students. method: this qualitative study used a modified six-step nominal group technique whereby participants (six law students identified through snowball sampling) generated, discussed and reached a consensus on accommodations needed by individuals with communication disabilities, enabling them to provide testimony in court. data were analysed using thematic analysis principles. results: the study found that although participants had not received any instruction on disability rights, access to justice or court accommodations during their legal training at the undergraduate level, they were able to perceive and learn about four main types of court accommodations for persons with communication disabilities to enable their testimony. conclusion: final-year law students are aware of court accommodations despite not having received formal instruction in disability law. contribution: the inclusion of disability rights and court accommodations is recommended at the undergraduate level to ensure that when in practice, lawyers have knowledge on ensuring access to justice for persons with communication disabilities. keywords: access; accommodations; communication; court; disability; education; justice. introduction sooner or later, most people will need a lawyer to help them navigate the legal system – be it to draft or review a contract or a will, to handle a divorce or a traffic offence, or for legal representation in court. this is even more true for persons with disabilities globally, as they typically face systemic exclusion and marginalisation that inhibit their equal participation in all major sectors of society, including the justice sector (kim, skinner & parish 2020). persons with disabilities face an elevated risk of encountering different forms of violence and abuse compared to their peers without disability (world health organization & world bank 2011). a recent meta-analysis that reported on 68 studies representing 12 427 participants showed that individuals with disabilities face a notably increased risk of sexual victimisation compared to their counterparts without disabilities (odd ratio = 2.27). moreover, sensory impairment (i.e. visual and hearing impairment) was the type of disability associated with the highest risk of sexual victimisation (mailhot amborski et al. 2021). this meta-analysis also showed that individuals with disabilities in african countries face significantly greater odds of sexual victimisation compared to those in all other countries. communication disability increases the risk of violence and abuse (badcock & sakellariou 2022; larson et al. 2023; marshall & barrett 2018). persons with communication disabilities have limited communication skills and cannot rely solely on speech to meet their communication needs (white et al. 2020). for some individuals, understanding language (receptive language) may be affected and for others, only the ability to express themselves verbally is affected. persons with communication disabilities may also have various coexisting disabilities, such as intellectual, physical, sensory or multiple disabilities (bornman 2017). additionally, the communication disability can be present from birth or acquired later in life, for example, through a stroke. these individuals can be of any age, gender or social background. their vulnerability to violence and abuse is heightened because communication barriers may hinder their ability to disclose and report violence and abuse (marshall & barrett 2018; saxton et al. 2001). in some cases, misinterpretation may occur when individuals lack comprehension of (sexual) assault or are unable to articulate refusal, leading to a potentially erroneous perception of consent (benedet & grant 2007). the intersectionality of communication disability, sexual or gender-based violence and poverty arguably make these victims some of life’s most vulnerable persons (atewologun, 2018; de beco 2017; ortoleva & lewis 2012), making it necessary for them to participate in the justice system, preferably with the assistance of a lawyer. crucially, research also indicates that without the right accommodations, persons with communication disabilities can struggle to participate effectively in the justice system (white & msipa 2018). effective communication, particularly verbal communication, is crucial in reporting human rights violations, seeking assistance and accessing legal, medical and psychosocial support (white et al. 2021). however, persons with communication disabilities may, for example, find it difficult to express themselves through speech, understand what others are saying and concentrate for long periods. persons with communication disabilities are often denied access to fair and equal treatment in the justice system because of the numerous barriers they experience, including being discredited, stigma, being perceived as vulnerable, encountering a lack of understanding from service providers and diminished capacity to report (marshall & barrett 2018). consequently, women with communication disabilities not only have an increased risk of experiencing sexual and gender-based violence, but they also run a higher risk of receiving inappropriate responses to it (ortoleva & lewis 2012; world bank 2012). a vast amount of research already exists on the nature of accommodations that may be provided to ensure that persons with communication disabilities participate effectively in the justice system. however, these accommodations can only be of practical benefit to persons with communication disabilities if the lawyers working in the justice system as prosecutors, defence counsels and magistrates are aware of them and ensure their provision. thus, this article aims to examine how much final-year law students – who represent the next generation of lawyers – know about court accommodations for individuals with communication disabilities. legal basis for the provision of accommodations to enable equal access to justice the right to access justice is a human right enshrined in international human rights law. at a global level, article 13 of the convention on the rights of persons with disabilities (crpd) provides for the right to access justice, making it the first global human rights instrument to expressly provide for a substantive right to access justice (united nations 2006). at a regional level, the right to access justice is enshrined in article 13 of the protocol to the african charter on human and peoples’ rights on the rights of persons with disabilities in africa (african union 2018). south africa has ratified both the crpd (30 november 2007) and the african disability protocol (01 february 2023) indicating its willingness to uphold and be bound by the norms and standards set out in these instruments, including the right to access justice. it should be noted, however, that there is no standard definition for the term ‘access to justice’ (nkhata 2022). nevertheless, the meaning of access to justice can be gleaned from these instruments and from literature. although the crpd and the african disability protocol do not define access to justice per se, they conceptualise access as a broad concept that includes social, intellectual, communicative, institutional, physical and economic accessibility while considering the diversity within disability. access to justice, therefore, includes access to facilities and access to services, systems and procedures. the term ‘justice’ encompasses the concepts of substantive, procedural and symbolic justice. substantive justice deals primarily with citizens and the government. in other words, it entails an assessment of the available claims or options citizens might have if they feel that their human rights have been violated because of discrimination rooted in their disability, resulting in, for example reduced employment or education opportunities (raj 2023). procedural justice centres on the opportunities and barriers individuals encounter when bringing their claims to institutions of justice such as the police and the courts. barriers include physical, structural (legal process), communicative and/or language barriers, obstacles related to information and advice, high costs, uncertainties regarding outcomes and the inadequacy of court or tribunal settings (flynn 2016). symbolic justice, the third component, emphasises how a specific legal system fosters a sense of belonging and empowerment among citizens. all three components of justice (namely substantive, procedural and symbolic justice) are essential and must be present to uphold the right to access justice. however, the focus of this article is on procedural justice as this is most pertinent for effective participation by persons with communication disabilities in the justice system. article 13(1) of the crpd and article 13(1) of the african disability protocol specifically require the provision of accommodations to ensure that persons with disabilities have equal access to justice. indeed, the provision of accommodations is one sure way of affording procedural justice to persons with communication disabilities. examples of accommodations that may be provided to persons with communication disabilities can be found in the crpd, which perceives ‘communication’ as a concept that is broader than spoken language. according to article 2 of the crpd, communication includes (united nations 2006): [l]anguages, display of text, braille, tactile communication, large print, accessible multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes, means and formats of communication, including accessible information and communication technology. (n.p.) therefore, if crime victims with a communication disability wish to report the incident and file charges against the alleged offender at a police station, accommodations should be put in place to ensure their effective participation. if they are denied accommodations and clear and effective communication with the police officer is not possible or if information is presented in a format that is inaccessible to the individual, then they will have been denied the right to access justice. ultimately, they would have been discriminated against based on disability, as the denial of reasonable accommodations constitutes disability discrimination (crpd, article 2; african disability protocol, article 1). moreover, because human rights are inseparable, interdependent and interconnected, the denial of access to justice also results in the denial of other human rights and fundamental freedoms (ortoleva 2011). for example, the right to equality and non-discrimination and the right to freedom from exploitation, violence and abuse may also be violated because of a denial of the right to access justice (crpd, articles 5 and 16). south africa has not yet domesticated the crpd and the african disability protocol through the enactment of disability-specific legislation despite having ratified both instruments. nevertheless, there are provisions in south african law that can be used to protect the right of persons with communication disabilities to access justice on an equal basis with others. the constitution of the republic of south africa (1996) upholds the right to equality before the law (section 9[1]) and prohibits discrimination on various grounds including disability in section 9(3). the prohibition of disability discrimination applies to all sectors, including the justice sector, providing a basis for overcoming barriers to accessing justice through the provision of reasonable accommodations. moreover, the promotion of equality and prevention of unfair discrimination act (pepuda, 2000) prohibits discrimination based on disability, which includes denial or removal of any supporting or enabling facility (section 9a), and the failure to eliminate obstacles and to reasonably accommodate (section 9[c]). promotion of equality and prevention of unfair discrimination act can therefore also be used as a basis for providing accommodations in the justice system. however, the constitution and pepuda do not state the exact provisions that can be provided to persons with communication disabilities. recent legal reforms are useful for bridging this gap. for example, in the past, witnesses in the south african justice system were typically expected to participate by giving oral testimony (i.e. ‘viva voce’) in open court (bekker 1994). as a result of the difficulties that persons with communication disabilities have with verbal communication, their participation in legal matters was restricted. fortunately, south african lawmakers demonstrated their commitment to correcting this violation of human rights through section 7 of the criminal and related matters (amendment) act 12 of 2021, which now allows any form of communication to be considered ‘viva voce’ should the person have disabilities that render them unable to speak. hence, this legislation closely aligns with the crpd, which directs state parties, including south africa, to establish suitable mechanisms for supporting individuals in exercising their rights. this involves facilitating their effective participation in court through the provision of appropriate accommodations (white 2021; white et al. 2020; white et al. 2021). furthermore, the criminal and related matters (amendment) act amends section 170a of the criminal procedure act to allow witnesses with physical, psychological or mental disabilities to testify through an intermediary, not just witnesses below the age of 18 years as was the case before. extending the use of intermediaries (communication facilitators) to persons with these disabilities may also benefit persons with communication disabilities. the 2021 amendment act also provides for the use of intermediaries in proceedings other than criminal proceedings, thereby extending the accommodation of testifying with communication facilitation through an intermediary to other proceedings including civil and administrative proceedings. cumulatively, these international and domestic instruments provide a legal basis for the provision of accommodations to persons with communication disabilities in south africa. conceptual framework for the provision of accommodations this article relies on two conceptual frameworks for the provision of accommodations for the purposes of upholding the right of persons with communication disabilities to access justice. firstly, the social model of disability informs the provision of accommodations by acknowledging that what prevents persons with communication disabilities from participating effectively in the justice system is not the impairment alone, but the interaction between impairment and environmental and attitudinal barriers (msipa 2021). therefore, to guarantee equal access to justice, it is crucial to offer accommodations to people with communication disabilities that address their specific needs (e.g. requesting frequent breaks; allowing communication systems) while also addressing environmental barriers (e.g. adjusting the lighting in court; considering the placement of communication system when providing testimony) as well as confronting attitudinal barriers (e.g. misconceptions about the ability of persons with communication disabilities to testify; use of intermediaries to rephrase questions). secondly, the article emphasises the fact that the provision of accommodations is a right to which all persons with communication disabilities are entitled, not a privilege. south africa, therefore, through its justice system, has a duty to uphold this right in court for all persons with communication disabilities. this position is informed by the human rights model of disability, which recognises the diversity of humanity and perceives disability as part of that human diversity. the human rights model emphasises the humanity of persons with disabilities and reiterates their entitlement to all human rights and fundamental freedoms based on that humanity. therefore, it comes as no surprise that by employing a rights-based approach to disability, there has been a consistent global rise in awareness of disability rights and the eradication of discrimination based on disability over the last two decades. this trend was galvanised when the united nations general assembly adopted the crpd and its optional protocol on 13 december 2006, which subsequently became the most rapidly negotiated human rights treaty to date (watson et al. 2022). accommodations are the best means of guaranteeing access to justice, and all persons with disabilities have the right to receive them. therefore, this study aimed to explore the awareness of final-year law students concerning court accommodations available for individuals with communication disabilities, allowing them to testify in a south african court. the results were used to gauge law students’ awareness of possible accommodations to inspire ideas for expanding the curriculum for undergraduate students. this knowledge could pave the way for legal practitioners to request these accommodations and ensure that the accommodations are aligned with the expectations of different members of the judicial system (e.g. lawyers, advocates, prosecutors, judges and magistrates). research methods and design study design a thoroughly established, multi-step, qualitative small-group interview method, namely the nominal group technique (ngt), was employed, as it facilitates a comprehensive understanding of underexplored phenomena. in this study, the unexplored phenomena were the accommodations needed by persons with communication disability to enable their testimony in court. the ngt technique employs a systematic approach to group brainstorming, aiming to attain consensus among participants (naudé & bornman 2021). it is valuable for systematically generating a diverse range of perspectives, as it integrates the interactive and exploratory nature of focus groups with the depth of individual reflection. consequently, it helps circumvent potential social pressures that may influence group-based approaches (hugé & mukherjee 2018). as such, it also promotes input from all members in the group while preventing one participant from dominating the discussion, as sometimes happens in focus group research (manera et al. 2019). in addition, it is a method that efficiently gathers insights and understanding regarding crucial considerations within a short timeframe. setting the study was conducted among final-year law students at one of south africa’s research-intensive (tier 1) universities. the times higher education world university rankings 2022 ranked this law school as one of the best law schools in africa and among the top law schools in the world for five consecutive years (exact ranking position withheld for confidentiality reasons). the specific law school was selected as it is considered to deliver well-trained pre-service legal practitioners who can cope with practice demands. study population and sampling strategy participants were recruited via a non-intrusive sampling method known as snowballing (leedy & ormrod 2020). the snowballing started with a final-year law student approaching a lecturer after having read in the mainstream media about a court case in which the victim testified using augmentative and alternative communication. this student was informed about a large ongoing research study that focussed on court accommodations for persons with communication disabilities (white 2021). when the purpose of the research was explained, the student volunteered to participate and suggested other potential participants from their network – that is a snowballing approach. this student was asked to disseminate the information letter to their networks, and if individuals in this network indicated a willingness to participate in the study, they were asked to contact one of the researchers via whatsapp. no pressure to participate was placed on any participant. an information letter was emailed directly to the potential participants to confirm their interest. as per the focus of the study, only one selection criterion was set: potential participants had to be in the final year of their undergraduate legal studies at this specific university. this ensured that all potential participants would have a broad understanding of the legal system in south africa and would not have studied any disability-specific modules at the undergraduate level. as the participants were recruited from the same network and were familiar with one another, rapport was quickly established. this resulted in honest and consistent responses being given despite the sensitive nature of the topic (horsfall et al. 2021). the sample included 6 final-year llb students: 4 ba (llb) students and 2 bcom (llb) students. these totals are in line with general ngt researchers who state that the goal for optimal participation in an ngt should be between 4 and 7 participants (olsen 2019). the participants included 4 males and 2 females – each of them 23 years old. the home languages of the participants included afrikaans (4), bilingual afrikaans and english (1) and bilingual english and isizulu (1). all had excellent proficiency in english (in reading, writing and speaking). no participants self-disclosed that they had a disability, but four indicated that they had a relative with a disability, for example, a brother diagnosed with asperger syndrome, a cousin with a severe intellectual and communication disability, a family member with autism (relationship not specified) or a family member with intellectual disability (relationship not specified). one participant indicated that her mother was a teacher at a school for learners with special educational needs. data collection this study formed part of a larger research study and ethical approval was obtained from the ethics committee in the faculty of humanities at the relevant university before recruitment began. prospective participants who reached out to the researchers were invited through a whatsapp communication group following a peer’s recommendation about the study. they were asked to indicate their availability to attend the ngt group. all participants were informed that the study’s primary aim was to identify court accommodations for persons with communication disability (regardless of their role, whether as a witness or an accused). although the ngt session was scheduled for 90 min, it lasted 130 min. before the ngt group started, participants were requested to complete a consent form. a modified six-step format was used for the nominal group. the first step involved introducing both participants and moderators, along with explaining the purpose and the sequential steps that would be undertaken to establish the context. in the second step, participants were allowed to respond to the moderator’s specific question by silently generating their own ideas. they were then instructed to independently write down their ideas without consulting or discussing them with other participants. in step 3, participants were asked to share one thought at a time in a round-robin style of feedback, which continued until all the participants had presented all their ideas. at this stage, no discussion or debate took place. step 4 entailed a group discussion where participants had the opportunity to ask each other to clarify their ideas and step 5 involved the voting process and a ranking of the ideas generated. nominal group techniques typically include these five steps (giuliani et al. 2023). however, in this modified ngt, a sixth step was included in which the ideas that had been identified were grouped into themes by the participants. there was consensus among them that the different accommodations could not be ranked. in this section of the article, we provide a detailed stepwise description of how the ngt was applied in our study. step 1: opening statement after welcoming all the participants to the group, the two moderators (a legal expert and a communication disability expert) introduced the concepts of communication disability and court accommodations. we used a short video clip focussed on autism spectrum disorder – ‘amazing things happen’ – written by alex arnelines and assisted by prof tony attwood as the asd advisor (https://www.youtube.com/watch?v=rbwrrvw-cro). the video is described as having: [t]he aim to raise autism awareness among non-autistic audiences to stimulate understanding and tolerance in future generations. it is intended to be viewed, discussed, and shared (for free) by anyone, but especially teachers and parents. thereafter, a presentation provided an overview of the study, emphasising the aim and the significance of each participant’s contribution. step 2: generating ideas in step 2, participants were encouraged to contemplate and document their responses to the following question on post-it notes of various colours: ‘what do you think could be court accommodations that could be requested for persons with communication disability, to allow their equal participation in court?’ participants were invited to do this individually and to refrain from discussing the question within the group. the reason for maintaining silence throughout this step was to guarantee that each participant could develop and articulate their individual thoughts without being unduly influenced by comments from fellow group members (naudé & bornman 2021). this step took approximately 5 min. step 3: recording ideas responses documented in step 2 enabled participants to capture their ideas, and moderators then affixed their post-it notes on the wall for the entire group to observe. participants were subsequently prompted to individually share their written responses using a ‘round-robin’ technique, without engaging in debate, and to provide clarification regarding their comments. for instance, if they had indicated ‘support person’, they were asked to explain exactly what they meant. the fact that each participant used a unique colour of post-it notes helped them to easily identify their own postings. post-it notes with similar ideas were stacked together to facilitate streamlined discussions based on each concept. some duplicates contained synonyms (e.g. ‘written statements’ and ‘statement in printed format’, while some had the exact same wording, e.g. ‘interpreter’). this also ensured that the number of potential options was reduced. step 4: discussing ideas discussing each idea documented on the post-it notes gave participants a chance to articulate their comprehension of the rationale and the relative significance of their ideas. they subsequently engaged in discussion and debate. all participants showed high levels of interest in the topic, attentiveness to each other’s comments and engagement throughout. they were willing to provide opinions, enter into debates and disagree respectfully. as the participants were not inhibited about disagreeing with each other and were eager to explain their opinions, the nominal group discussion took longer than planned (horsfall et al. 2021). after the discussion, participants were tasked with grouping related ideas and concepts to form the main topics. this resulted in six themes: (1) appropriate court environment, (2) physical accommodations, (3) facilitating communication, (4) questioning, (5) remote testifying and (6) other (see figure 1). each of these themes comprised several different ideas. figure 1: a depiction of the process to develop themes from original generated ideas. (a) step 2: generating ideas participants were invited to silently generate ideas (one idea per post-it note) and randomly place these notes on the wall. (b) step 4: discussing ideas after discussing ideas, participants were asked to group ideas into main categories. step 5: voting on ideas in step 5, participants were requested to vote to indicate whether any of the identified topics or concepts should be prioritised or removed. there was consensus among the group that all the accommodations mentioned were of importance and that none could be ranked more significant than the other. the nature of the accommodations would be determined on a case-by-case basis to ensure equality. step 6: thematic analysis in the final step, participants collaborated in brainstorming to categorise the generated ideas and topics into themes. the inductive approach to data analysis empowered participants to construct their own framework rooted in their individual ideas. on concluding the ngt, the researchers adopted a latent approach that involved unpacking and describing the themes underlying the generated data (naudé & bornman 2021). the study concluded by thanking all participants for their lively engagement and insightful answers. they were also requested to complete a short 10-question biographic questionnaire. ethical considerations an application for full ethical approval was made to the university of pretoria ethics committee in the faculty of humanities and ethics consent was received on 19 february 2020. the ethics approval number is gw20180718hs. individual consent was obtained from all the participants, emphasising that their participation was voluntary and that anyone could withdraw at any time without any penalty (mishra et al. 2018). as all participants were final-year law students, they had a full understanding of what informed consent entails. this had a positive impact on their autonomy (barrow, brannan & khandhar 2023). the information letter provided details regarding the length of time needed to participate, what the study’s aims were, the procedure that would be followed and how confidentiality would be maintained. the researchers reassured the participants that their identities would be protected by providing deidentified participant numbers during the reporting of the findings. it was also reiterated that there were no risks associated with this study. as the focus of the study is in line with the crpd – specifically (but not limited to) article 13 – the results may contribute to improving access to justice for persons with communication disabilities in south african courts (white et al. 2021). key findings data obtained from the short biographic questionnaire showed that none of the participants thought that disability was addressed during their studies. however, all agreed that it should be included. one stated that it should become a core module, and another stated that after participating in the nominal group, he realised that ‘disability issues impact procedural aspects in various ways, and students should be made aware of that’. another participant stated that ‘disability awareness is important for understanding and respecting every human being’, while another explained that ‘it is important to know how to work and accommodate individuals with disabilities to help give them access to justice’. the data obtained through the ngt provided a wealth of information about potential accommodations that could be used in court for persons with communication disabilities. this showed that students were aware of the possible accommodations that could be offered. initially, they grouped their ideas related to accommodations into six categories (see table 1), namely (1) appropriate court environment, (2) physical accommodations, (3) facilitating communication, (4) questioning, (5) remote testifying and (6) other. the first category generated the most ideas and included the theme of ensuring an appropriate court environment. here participants included accommodations such as holding proceedings in closed court and prohibiting media access to the courtroom. the former accommodation was featured five times, while the latter was featured only once. they also discussed aspects such as limiting the number of people present in court to only the parties who are directly involved and limiting spectator access. furthermore, they suggested holding court in a private or separate room in the court or that the person could testify outside of court – such as the accommodation that exists for children. table 1: key accommodations as identified, categorised and ranked by participants after removal of duplicate ideas (n = 6). the second theme concerned accommodations aimed at making the physical environment in the courtroom more sympathetic, for example by reducing the level of formalities, providing ramp access to the courtroom, allowing frequent breaks and using natural light instead of flickering fluorescent lights. accommodations relating to the reduction of the amount of light for persons with autism featured the most in this category. participants repeatedly mentioned that accommodations should not be treated as a ‘one-size-fits-all’ approach and that the accommodations should be requested on an individual basis, for example, some persons would need ramps while others would need braille. the third theme concerned accommodations that focus on facilitating communication. here, most of the participants’ suggestions related to making available ‘human resources’. these included a ‘communication translator’ (this person was described as somebody who could interpret the person’s communication attempts if the person had no means of verbal communication and not in the more commonly understood form of a language translator); intermediaries; interpreters where necessary (i.e. persons translating one language into another, which could also include sign language interpreters) and allowing a ‘close person’ to be present for support. these ‘close persons’ were described as caregivers, close friends, guardians or family members. under the category of questioning, the participants described several different accommodations such as avoiding leading questions, giving questions in written format, making use of closed questions that would only require a yes/no response and using easy-to-read materials. they also discussed how the cross-examination process could be adapted (e.g. by asking the court to be more lenient with victims with communication disabilities; to assist the victim during cross-examination; for the prosecutor to provide the questions to the judge in written format so that the judge could ask them in a way that would not traumatise the person). participants further stated that perhaps the questions (as well as the answers) could be presented in different formats (e.g. in electronic format) although they were not sure exactly what these alternative formats could be. the fifth theme related to making provision for remote testimony, including video testimony from a different location and conducting proceedings at a different location, such as the witness’s home. (the reader is reminded that this ngt was conducted in the aftermath of the global coronavirus disease 2019 [covid-19] pandemic.) the sixth and final theme addressed other accommodations that could be provided either before or after the court proceedings, including providing counselling before and after the court appearance, or where appropriate, alternative placement to prisons in the case of accused persons with disabilities who have been convicted. hereafter, the themes were further reduced, regrouped and renamed by the participants. after intensive discussion, the participants agreed on four main themes: human accommodations to facilitate communication (e.g. intermediaries, interpreters, support persons such as a family member and translators) environmental accommodations (e.g. closed court, in-camera proceedings in the judge’s chamber, ramp access, signage and restricted media access) procedural accommodations (e.g. relaxed questioning strategies, written statements) accommodations related to processes before (e.g. how bail hearings are conducted) and after the court appearance (e.g. sentencing and counselling). discussion the ngt discussion confirmed the findings from the biographic questionnaire as it became clear that the participants had not received any lectures about the provision of accommodations to guarantee equitable access to justice for individuals with communication disabilities. they expressed disappointment at not having received any lectures on the topic of accommodations and expressed a desire to learn more about disability. this is in line with a canadian study that found that law students were generally very receptive to learning about disability and that professors expressed a keen interest in broadening their understanding in this field and exposing students to it (lepofsky 2022). nevertheless, the number of post-it notes generated during the ngt indicated the richness of the participants’ voices. despite not having had specific lectures on disability, final-year students were able to draw on knowledge gleaned during their studies and provide a comprehensive range of different accommodations. as the students were familiar with one another, rapport was quickly established, thus creating a non-threatening environment, which yielded rich and diverse data. the students were eager to explain and justify their ideas, and being surprised that they were more aware of accommodations than they had initially anticipated, they suggested a comprehensive range of accommodations. furthermore, although none of the participants had yet been to court, this did not negatively impact their knowledge of accommodations. although the participants did not know much about disability, they had some knowledge about accommodations. they based this knowledge on having a family member with a disability or having watched popular television shows in which persons with disabilities are featured (such as the good doctor, which stars an autistic medical doctor). to conceptualise various accommodations, the participants also drew parallels with accommodations for children. furthermore, they asked questions about the various accommodations to relate this to existing knowledge, indicating that they were internalising the information (lepofsky 2022). they related the accommodations to the rules of criminal procedure and evidence taught in procedural law, which is commonly recognised as a fundamental element in the study of law (du plessis & welgemoed 2022). this led them to asking pertinent questions such as whether some of the accommodations they suggested, such as providing written testimony instead of oral testimony, would be permitted in court. the nominal group discussion also revealed that the participants’ knowledge was compartmentalised in terms of the modules they had studied. for instance, when in camera proceedings were mentioned, they immediately related this to their civil procedure module where the socratic pedagogy is applied. it is typically used during the training of undergraduate law students where, according to du plessis and welgemoed (2022), they compartmentalise their work into ‘neat and artificial categories’. crucially, the participants did not object to the provision of any of the accommodations, for example, on the basis of reasonableness. instead, they were accepting of the fact that accommodations need to be considered on a case-by-case basis, which is in line with best practices in disability (white et al. 2020). this finding highlights the fact that at an undergraduate level, students need to be taught how to view a law topic through a disability lens (lepofsky 2022). for instance, when addressing the bill of rights, students ought to learn that, for individuals with communication disabilities, the right to equality before the law includes acknowledging the right to access justice, particularly through the provision of various accommodations. universities should be encouraged to design an llb curriculum that provides the most comprehensive and professional preparation for law students in anticipation of legal practice. consistent with article 9 of the crpd, stakeholders should undergo training to address accessibility issues affecting individuals with disabilities (united nations 2006). not all law students will opt for a career in litigation after obtaining their llb degree. nonetheless, the fact that they have legal training may lead many to professions involving litigation, such as serving as legal advisers or corporate lawyers. in these roles, they may act as the primary interface between their employers and practising attorneys or advocates. the chances that they will encounter persons with communication disabilities are significant. the primary responsibility of universities should be to determine the essential knowledge that lawyers, as members of a privileged profession, must possess at a minimum. this necessitates knowledge about disability. students should at least be equipped with basic disability literacy skills, which refers to the fact that they should be educated about the components of disability etiquette, encompassing appropriate ways to address and engage with individuals who have disabilities (van niekerk, maguvhe & magano 2022). there should be an awareness of the need for physical accessibility (e.g. ramps at court buildings, chambers and bathrooms), as well as the techniques that guarantee effective communication with individuals with disabilities, both in face-to-face interactions and over the phone. law students should be made aware of the procedural accommodations that could be made available to support persons with communication disabilities (white & msipa 2018). this implies adequate internal and organisational capacity to provide accommodations when requested or needed. while disability literacy should be seen as a core skill for llb students, a disability curriculum should be provided to all law students, not exclusively to those who are enrolled in specialised disability courses (lepofsky 2022). within the legal context, disability literacy entails the ability to acknowledge the necessity for and pinpoint the distinct services and benefits that individuals with disabilities might need. it also involves developing the capability to assist them in evaluating and understanding their options for accessing justice. limitations small sample sizes are often critiqued for limited generalisability of the results, but using an ngt focusses on minimising the ‘participation paradox’ (that is where an increase in participants diminishes the role of the individual) by intentionally choosing a small sample and leveraging the strengths of both individual and group interviews (giuliani et al. 2023; naudé & bornman 2021). to contain minimal group studies and ensure an effective yet manageable process, the group was restricted to a maximum of seven participants (mcmillan et al. 2014). it should also be noted that the participants had strong personal experiences of disability in their own lives; hence they may have been more informed and thoughtful on the topic than their peers. conclusions students in their final year of undergraduate studies have a fundamental understanding of procedural law as the latter forms the basis of their law training in the years that preceded. expanding on that, they could be guided to understand and appreciate disability rights to know how to apply the procedural law principles to serve as a vehicle for understanding how accommodations can be provided in line with human rights law. making disability inclusion a focal point in the education of law students is essential. however, during undergraduate training, there is often little to no practical application as to how the laws and principles would manifest in a courtroom. the socratic method, which has been described as the signature training pedagogy for law students globally, focusses on classroom lectures with an emphasis on students solely engaging with theoretical concepts. at the core of these lectures lies discussion, complemented by the utilisation of textbooks, legislation and occasionally, authentic legal documents. questions, answers and discussions revolve around the topics addressed at a particular stage of the course (du plessis & welgemoed 2022). the socratic method additionally necessitates lecturers to craft and organise questions, along with their responses to students’ questions, intending to steer students towards solutions. this presupposes that such an approach fosters critical thinking and the proficient presentation of ideas and responses to the relevant questions. however, this approach incorporates minimal or no practical application to simulated or real-life situations (lepofsky 2022). hence, students enter legal practice without experience of how to consider – from a holistic perspective – all evidence in a particular case (e.g. from a witness with a communication disability). elevating disability rights to have a consistent, robust and equitable emphasis in undergraduate law education is critical, aligning with the principles of equity, diversity and inclusion emphasised in the constitution. it is critical that all personnel involved in the administration of justice, including police officers, lawyers, prosecutors, magistrates and judges, possess a certain understanding of how to promote and facilitate the effective participation of individuals with communication disabilities through the provision of accommodations throughout the legal process. ideally, the impartation of this knowledge should start at the undergraduate level when pre-service legal practitioners are receiving legal practice training (du plessis & welgemoed 2022). at present, the legal professionals in south africa lack adequate preparation to address the legal requirements of individuals with communication disabilities. this gap arises because legal education has predominantly, if not exclusively, concentrated on training undergraduate law students to cater to individuals without disabilities. in fact, law students can complete their legal studies without gaining any knowledge on how to fulfil the legal requirements of clients with disabilities by providing accommodations (lepofsky 2022). typically, disability rights and access to justice for persons with disabilities (and by implication communication disability) are taught at the master’s level at south african universities, and most practising lawyers in south africa do not hold a master’s degree. consequently, newly graduated lawyers entering the workforce possess minimal to no knowledge about offering accommodations to individuals with communication disabilities within the justice system. the plea in this article is therefore that law students should be exposed to disability challenges as part of their training, for example, through conducting tutorial sessions on disability, verbal arguments, mock trials and the presentation of evidence. mock trials can be in the format of brief class exercises or allocated dedicated time, for instance playing out a particular scenario about a person with a disability. in summary, the research objectives and discussed themes led to the following conclusions: the education on disability law at the university level should be designed to mould students into competent and professionally-minded legal practitioners capable of delivering high-quality legal services to all citizens, including persons with (communication) disability (du plessis & welgemoed 2022). this involves a solid understanding of the accommodations that can be offered to ensure substantive justice for these individuals. in recent times, the prominence of disability rights and the significance of ensuring access to justice for all have increased, particularly with the adoption of the crpd (united nations 2006), and in particular its article 13, which highlights the impact of international legislation. recommendations the following recommendations emerged from the findings of the ngt: disability rights must be included in the undergraduate llb curriculum because law students often graduate without fundamental practical skills in disability law, hindering their ability to ensure access to justice for all in their professional practice. there is a need to raise awareness about the importance of court accommodations, not only among undergraduate law students but also among those who are already in legal practice and persons from other sectors, including academia, organisations of persons with disabilities and law and policymakers. domestic legislation, which may not consistently offer accommodations in court for individuals with communication disabilities, should be reviewed and amended to ensure that it expressly mandates the provision of accommodations. in some jurisdictions, accommodations are included in practice bench books. it would be suitable to also include these in the south african context. acknowledgements the authors acknowledge and are thankful towards robyn white, responsible for the project administration, tracy gibbs for resources and the participants for their insights. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.b. and d.m. equally conceived the original idea during a broader discussion on court accommodations. they (j.b., d.m.) subsequently identified the research sample, carried out the nominal group technique and wrote the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of the study are available upon request from the corresponding author, j.b. the data are not publicly available because they contain 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disabilities’, african disabilities yearbook 6, 102–120. https://doi.org/10.29053/2413-7138/2018/v6a5 world bank, 2012, women with disability, viewed 06 november 2023, from http://web.worldbank.org/wbsite/ext. world health organization (who) & world bank, 2011, world report on disability, viewed 17 august 2021, from http://whqlibdoc.who.int/publications/2011/9789240685215_eng. article information authors: mac maclachlan1,2 mutamad amin3 gubela mji2 hasheem mannan1,4 joanne mcveigh1 eilish mcauliffe1 elina amadhila5 alister munthali6 arne h. eide7 a. kudakwashe dube8 affiliations: 1centre for global health and school of psychology, trinity college dublin, ireland2centre for rehabilitation studies, stellenbosch university, south africa 3research & grants, ahfad university for women, omdurman, sudan 4nossal institute for global health, university of melbourne, australia 5multidisciplinary research centre, university of namibia, namibia 6centre for social research, university of malawi, malawi 7sintef health, sintef, oslo, norway 8secretariat of the african decade of persons with disabilities, pretoria, south africa correspondence to: mac maclachlan postal address: centre for global health, university of dublin, trinity college, 7–9 leinster street south, dublin 2, ireland dates: received: 27 sept. 2013 accepted: 28 may 2014 published: 06 oct. 2014 how to cite this article: maclachlan, m., amin, m., mji, g., mannan, h., mcveigh, j., mcauliffe, e. et al., 2014, ‘learning from doing the equitable project: context and process in a multi-country research project on vulnerable populations in africa’, african journal of disability 3(2), art. #89, 12 pages. http://dx.doi.org/10.4102/ ajod.v3i2.89 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. learning from doing the equitable project: content, context, process, and impact of a multi-country research project on vulnerable populations in africa in this original research... open access • abstract • introduction    • background    • research proposal development    • work packages    • capacity building • method • results    • content    • context    • process    • impact    • future    • other comments • discussion • conclusion • acknowledgements    • competing interests    • authors’ contributions • referances • appendix 1 • appendix 2 • appendix 3 • footnotes abstract top ↑ background: the ‘equitable’ project carried out content analyses of policies and collected and analysed qualitative and quantitative data concerning access to health services in sudan, malawi, namibia and south africa. our particular concern was to address the situation of people with disabilities, although not in isolation from other marginalised or vulnerable groups.objectives: this article reports on the content, context, process and impact of project equitable, funded by the european commission seventh research framework programme, which brought together researchers from ireland, norway, south africa, namibia, sudan and malawi. method: after the 4-year project ended in february 2013, all members of the consortium were asked to anonymously complete a bespoke questionnaire designed by the coordinating team. the purpose of the questionnaire was to capture the views of those who collaborated on the research project in relation to issues of content, context, process and impact of the equitable project. results: our results indicated some of the successes and challenges encountered by our consortium. conclusion: we identified contextual and process learning points, factors often not discussed in papers, which typically focus on the reporting of the ‘content’ of results. introduction top ↑ ‘equitable’ is the acronym given to a project funded by the european commission seventh framework programme (fp7) with the full name: ‘enabling universal and equitable access to healthcare for vulnerable people in resource poor settings in africa’. whilst publications from equitable address the situation of people with disabilities and other marginalised or vulnerable groups with regards to access and quality of health services, this article is concerned with the content, context, process and impact of the research project from the perspective of the researchers’ consortium. the aim was to learn key lessons from this comprehensive collaboration that could be utilised in future complex international research studies. background equitable was classified as a ‘collaborative project’, the proposal being submitted in response to a call in 2007 by the name of ‘health – 2007 – 3.5–2’, under the subcategory of ‘universal and equitable access to health care and health financing’. the consortium was coordinated by trinity college dublin in ireland. the other european partner was a large independent research organisation, sintef (stiftelsen for industriell og teknisk forskning) in norway. african partners were ahfad university for women in sudan, the centre for social research (csr) at the university of malawi, the multidisciplinary research centre (mrc) at the university of namibia, the human sciences research council (hsrc) of south africa (which was a research agency rather than a funder), and the secretariat of the african decade of persons with disabilities (sadpd), a civil society organisation in south africa working across african countries and partnered with the african union, african governments, civil society organisations and disabled persons’ organisations, to promote inclusive development and human rights for people with disabilities. the department of psychology and centre for rehabilitation studies, both at stellenbosch university, south africa, were also included (see equitable project website: http:// www.equitableproject.org).the project was carried out from march 2009 until february 2013 with a particular focus on disability. people with disabilities were amongst its researchers, and organisations representing persons with disabilities were consulted. we also undertook extensive survey sampling of people with disabilities representing different cultures and contexts across 17 sites in the four project countries. research proposal development in order to develop a comprehensive research proposal involving eight distinct institutions, the members of the consortium were required to meet in person to discuss the core elements of the proposal. such a meeting was made possible by funding from the health research board networking grant and enterprise ireland networking grant. the first of the two meetings was convened in cape town in june 2007 and the second in dublin during july 2007. at the first meeting, participants were from trinity college dublin, stellenbosch university, sadpd, and sintef. in the subsequent meeting all members of the consortium gathered to assist the team at trinity college dublin to coordinate and host a meeting of likely partners. the members worked over 3 days to develop the concept that framed the proposal submission. in addition to the meetings in cape town and dublin, extensive electronic communication in relation to different versions of the proposal took place, providing the participants with further opportunities to influence the planned research study. all institutional members of the consortium had worked previously with at least one other institution in the consortium, and some with several institutions. established research relationships strengthened communication between partners and greatly contributed to creating a genuine collaborative working relationship during the development of the proposal.the crux of the consortium’s argument was that health care can neither be universal nor equitable if it is less accessible to some sections of society than to others. figure 1 illustrates schematically how we operationalised this: people with disabilities are distinguished by various activity limitations (including physical, social and psychological barriers). the extent to which these barriers impede access to health care is influenced by local contextual and health systems variables, and by characteristics of the individuals and the communities in which they live. figure 1: schematic summary of the theoretical model on which equitable was based. having identified and mutually agreed on partners who could work well together, we also sought to maximise the benefit of including the four african countries, where data collection was actually going to take place. why these four countries? what was it about this combination of countries that added value over any other group of countries? after teasing out distinguishing contextual factors in each country we recognised that these four countries allowed us to explore access to health care systems in contexts where a large proportion of the population has been displaced (sudan); where the population is highly dispersed (namibia); where chronic poverty and high disease burden compete for meagre resources (malawi); and where, despite relative wealth, universal and equitable access to healthcare is yet to be attained (south africa) (see maclachlan et al. 2012). we also sought to explore how activity limitations across the mentioned contexts interact with other factors that make people vulnerable to poor access to health care, such as age, gender, ethnicity and locality. work packages equitable comprised five work packages (wps): coordination (wp1), policy analyses (wp2), a comprehensive qualitative study (wp3), extensive household surveys (wp4), and dissemination (wp5). each of the methods chosen contributed different types of data that together yielded a more complete knowledge base (brannen 2005:182). data collection was carried out in all countries and, in principle, in the same way. the framework for the policy analyses, the guide for the interviews, the questionnaire, and the detailed design for the survey were consistent in all countries. country teams were responsible for data collection in their own country and worked in close collaboration with the respective wp leaders who were overseeing the exercise in each country, particularly to ensure fidelity to the agreed procedures. data analyses were led by wp leaders.figure 2 illustrates how we operationalised the management of the research programme into distinct wps. the rationale, operational details and leadership for each of the wps were discussed in detail and unanimously agreed upon. wps 1 and 5 were led by trinity college dublin, wp2 by ahfad university, wp3 by stellenbosch university, and wp4 by sintef. figure 2: schematic representation of the relationship between the five work packages in equitable the management structure provided a sound basis for shared responsibility and participation by assigning responsibility for the different wps to four different partners. all wps were organised under one lead person and institution with counterparts in each of the four countries where the research was carried out. the lead person in each of these countries joined the respective wp teams and led the country team for the specific wp. whilst intensive dialogue, including electronic, telephonic and face-to-face meetings aimed at establishing a ground for influence on the design in each wp, took place, the country teams also had sufficient flexibility to adapt to their own context and circumstances. the cost of such a flexible involvement approach may have been that some differences in research design and data collection were evident between the four project countries. however, the gain was assumed to be ownership, relevance and increased possibilities for utilisation of research results. capacity building capacity building within the project took place on different levels. firstly, country teams comprised both experienced senior researchers who led the project in their respective countries, and more junior researchers who acted as research assistants whilst working towards a masters or phd. their study research was supervised by the senior researchers with whom they were working. secondly, junior staff were involved in the publications of the different wps, including the drafting of manuscripts, and inclusion in the authorship of publications. thirdly, as mentioned previously, the wp leads were selected because of their particular experience and capacity, providing supervision to the country teams throughout the research process. finally, the four large annual meetings that took place during the research process, each in a different country, involved as many different country team members as possible, regardless of their seniority. this provided an excellent opportunity for mutual learning and exchange amongst the participants, including north-south, south-north, south-south and north-north. the research teams that included people with disabilities also afforded mutual learning from each other’s perspectives and experiences. this included transfer of cultural and context-specific knowledge, providing experience of great importance for both the overall design and methods. the coordinator, project manager and wp leads all put substantial effort into creating working relationships and an atmosphere of ‘valuing-all-perspectives’, which influenced the research process, the design, and the utilisation of results.the publication protocols and rules for joint publications, both of the overall project and in the country teams, were discussed extensively and were agreed upon by the team members. the publication protocol was first drafted at a meeting in sudan, with reference to the sudanese-led wp, and was subsequently adopted for all publications of the project in a meeting in norway. the project was officially launched in sudan in march 2009, following a year of financial and administrative negotiations with the european commission. in addition to its commencement in sudan, the consortium also held its annual and closing meetings in sudan, and also held annual meetings in norway, south africa, and zimbabwe. members of an external advisory board attended some of these meetings with participation by members from all of the countries and the institutional partners. method top ↑ on completion of the research, each of the 23 people who had participated in the consortium, including administrative, research, academic, and civil society staff, were emailed inviting them to complete anonymously a bespoke questionnaire designed by the coordinating team (m.m., h.m., and j.m.v.). the 30-item questionnaire was divided into six thematic sections: content issues (1), context issues (2), process issues (3), impact (4), future (5), and comments (6). the administered questionnaire is provided in appendix 1. anonymity was protected by asking participants in the survey to email their responses to a colleague at trinity college dublin who was not associated with the project. this person printed off the response sheets and gave them to the coordinating team without indicating which response belonged to whom. the maximum response time allowed was 5 days. results top ↑ ten women and ten men responded to the questionnaire. responses were from all countries and partners but were anonymous and could thus not be disaggregated in terms of countries or representative organisations. quantitative scores from the 20 respondents were tabulated, indicating scores to each quantitative question within each thematic group. all scores reported below were rated on a 5-point likert scale: strongly disagree (1), disagree (2), neither agree nor disagree (3), agree (4), and strongly agree (5). content mean and modal scores indicate a high level of satisfaction, although the range of scores regarding the number of good quality publications included a rating of 1 by one respondent (table 1). generally, respondents were satisfied that the project addressed its stated target and delivered on all contractual obligations (comparative analysis reports related to policy and summary analysis of qualitative and quantitative data) related to all wps, produced good peer-reviewed journal publications, and was relevant to people with disabilities. on content, the prevalent sentiment is captured by this comment provided by a project member who responded to the administered survey, ‘content issues of equitable were very pertinent to the continent [africa] and to the priorities worldwide’1. another respondent indicated that content not only focused on the ‘challenges facing people with disabilities, but also include[d] the broader issue of social inclusion for other marginalised or vulnerable groups’. strength of the content was signified by another respondent who emphasised that the project provided scientific evidence to support already-existing anecdotal evidence in the participating countries, in the comment ‘documented the evidence base of what was known more anecdotally in the countries participating’. table 1: equitable content issues. content areas that respondents considered partially fulfilled with room for improvement, included ‘the area of translation of the research evidence into practical feedback strategies’, and the ‘need to write papers that link the work packages of the study’. with regards to publications, many respondents felt that whilst publications from wp2, the policy wp, had been very satisfactory (see e.g. amadhila et al. 2013; amin et al. 2011; maclachlan et al. 2012), there were too few arising from wp3, the qualitative wp (braathen et al. 2013; van rooy et al. 2012). in relation to the publication protocol, one respondent indicated that its operationalisation was ‘unfair for researcher[s] at lower level [early career] in [their] country team’. other issues on publication related to a lack of time to analyse data from wp4, the quantitative wp, within the funding period. it was suggested that separate funding be secured to promote publication from the latter wp in particular, and also for dissemination and training on use of the policy analysis framework, ‘equiframe’, developed as part of wp2. context respondents indicated broad satisfaction concerning contextual sensitivity to socio-economic and cultural differences between and within countries, and that a multi-country collaboration was a satisfactory way to undertake the project (table 2). research was seen as contextually relevant and commended that the project did ‘not impose outside researchers on countries.’ this was seen as a key factor in upholding contextual sensitivity. the following response sums up this value-led approach: table 2: equitable context issues. a key feature of equitable research relates to the sourcing of locally available research resource persons, especially field research assistants (including persons with disabilities), and individualised training workshops to match the diverse talent pool (college graduates; diploma holders; school drop-outs) in each one of the project sites within the four countries. another widespread view on the nature and impact of the collaboration was summed up by one respondent who stated: the equitable project is an excellent example of how the north and south should work. the process involved all stakeholders from development of the proposal to implementation and publications. in all countries ethical approval was obtained from relevant irbs [institutional review boards]. collaboration amongst and between researchers from this south-north partnership was not without its complexities. the following statement provides a snapshot of some of the difficulties related to mutual respect and working relationships: i think the critical issue here is how to handle/tackle issues that undermines each other’s dignity. mixing north and south researchers offers us a window of opportunity to deal with some of these issue[s]/shortcomings of not handling each other appropriately. process in line with the focus of our interest, we asked relatively more questions about the process of working together than any other theme. by and large, respondents felt that their voices had been heard when they made a contribution, and that the perspective of persons with disabilities and their representative organisations was sought (table 3). recognising the complexities of south-north partnerships, relationships between country-team members, across country teams, and with the project coordinators and wp leaders, all scored highly. initial challenges of coordinating this multi-country and multidisciplinary study were overcome, as one respondent noted: table 3: equitable process issues. perception is that initially it was difficult to coordinate different voices that were relating to different needs and contextual issues – especially via e-mail without face-to-face discussions – this improved when the project team met as a whole group. the publication protocol was highlighted in terms of an enabling process with one respondent indicating that: establishing the publication protocol through consensus was a real strength of the process. also, country teams having direct access to both work package leaders and project coordinator[s] meant real time field challenges were addressed at once. respondents were however least satisfied with their experience in relation to research administration of the project, particularly liaising with the european commission’s seventh framework programme (fp7) office. in this regard one respondent stated: i think this has been a happy and productive project, with lots more yet to come from it. i don’t feel that the ec requirements are necessarily overly burdensome – i think we should be very accountable for the large sum of money entrusted to us – however, the continual moving of the ‘goalposts’ in terms of what is required by brussels, is really problematic and frustrating for all, including, i am sure, commission staff in brussels. two distinct research administration challenges were highlighted. they were: ‘the constant change of project officer in brussels is a challenge to maintain communications’, and ‘the constant change without automatic notification of the fp7 participants portal (on-line reporting mechanisms)’. impact respondents expressed greater satisfaction with publications than influencing behavioural changes in practitioners, influencing policy development or revision, or heightening the profile of disability for african governments (table 4). respondents however recognised the initiative that each team took in influencing policy development or revision. in particular in malawi the research team facilitated a policy workshop which resulted in developing malawi’s first national health policy, based on equitable policy analyses findings. table 4: equitable impact. future respondents felt that more time should be spent on publishing data, especially from wps 3 and 4, but enthusiasm for giving time to influencing policy and practice was also strong (table 5). no open questions were asked on this theme. table 5: equitable future. other comments on working together with the same consortium in the future, the vast majority gave a resounding ‘yes’ (19 out of 20). in relation to the following question, ‘what was the best thing about working in equitable?’, several participants mentioned as younger researchers the opportunity to complete a thesis as part of the equitable research project: but it was indicated that more experienced researchers also benefited. several respondents returned to process issues as the ‘best thing’, for instance: ‘the implementation of the project has been carried out in a participatory manner with all project partners being involved.’ finally, many respondents referred to being part of a multior interdisciplinary team, and several respondents referred to the enjoyment and benefit of the annual face-to-face meetings, which usually consisted of 20–30 participants across 2–3 days, each in beautiful and stimulating locations across different countries. in relation to the question, ‘what has been the worst thing about being involved in equitable?’, several respondents mentioned financial, administrative or reporting issues. some were concerned with missed opportunities with regards to using much of the collected data, whilst others noted the challenges of broad participation: ‘time consumed in reaching [con]census in different issues.’ see box 1 for further comments offered by respondents. box 1: equitable questionnaire comments [sic]. discussion top ↑ this study explored the content, context, process and impact of the research undertaken, and asked for general comments and ideas for the future. overall, it is clear that the 20 respondents felt that their participation in the project as members of the project team was a positive experience. most participants would be keen to work together again. of particular note was that respondents felt that the project successfully addressed its stated content targets, was conducted in a way appropriate to different cultural and socio-economic contexts, and engendered a process of participation and mutual learning.some specific issues are worth highlighting. given that large projects often end their funding period when much analyses, publication and dissemination remains to be carried out, one challenge will be to maintain motivation and coherence of activity between team members who may be working on new projects. equiframe has already been used to write new, and revise existing, health policies in sudan, malawi and south africa. we hope country teams will continue to monitor the impact of this framework on policy revision and development, and contribute to monitoring and evaluation of the real impact of policies. the impact of equiframe (mannan et al. 2014) already reaches beyond africa, with handicap international translating it into french for use by civil society organisations internationally, and the united nations educational, scientific and cultural organisation (unesco) organising a conference on its potential use in contributing to their social inclusion work in south-east asia. findings from equiframe have also been presented at leading regional and international fora such as the african union social affairs ministerial summit in khartoum (dube et al. 2010), and the united nations commission for social development in new york (maclachlan 2012). returning to our own capacity building within the research team, several participants undertook msc or phd degrees as part of the project and have indicated benefits from being part of a multi-country and multidisciplinary team. the project has thus presented students with the opportunity to participate in a large complex project and some of these students may go on to lead such projects in the future. whilst most participants felt that the research protocol was a strength of the project, it having been agreed in open discussion in project meetings (appendix 2), some suggested that this might be unfair to early career researchers. in particular, few of the early career researchers had experience of publishing prior to involvement in project equitable. despite this, namibia and south africa facilitated early career researchers to publish as lead authors on multi-authored papers (amadhila et al. 2013; braathen et al. 2013), and it has been made clear that any individual can be the lead of a publication if they initiate it. indeed, one of the team’s greatest challenges is to do justice to the enormous amount of data collected in wp4, the quantitative wp, as yet unpublished in peer-reviewed journals. whilst as per the contractual obligations to the european commission, a summary of the analyses has been submitted, the team has a moral responsibility to ‘make public’ (peer-reviewed submissions) data that has been provided to the team by thousands of participants. further funding support should be sought to facilitate detailed analyses for publishing in peer-review journals. the equitable research project has achieved many of its objectives in terms of enabling vulnerable individuals’ voices and those of researchers themselves to be heard. the inclusion of representatives of the sadpd in the consortium and in the project team provided a good grounding for dialogue between researchers and civil society. individuals’ voices from different communities and backgrounds were heard and communicated through the research team throughout data collection and dissemination. although the project had a full year of research analyses and the writing up of this data following data collection comprised in the schedule, it was still not enough, and much of the data from the project still awaits analyses and publication. more time for analyses and write up should be funded and more members of the team should be encouraged to lead the write up of data for dissemination. whilst writing workshops can empower less experienced researchers, the nature of their own contracts often means that they have insufficient time to give to the writing up of research, although many would like to do this, recognising that it would be advantageous for their own careers. the development of ‘research-writing mentors’, including outside the research team, could be one way of addressing this issue. the quest to gain understanding and solutions on issues of equitable access to health services for vulnerable groups was the core aim that brought together the equitable project partners. it is this quest that kept the group bonded together and ensured sustainability of the project despite our differences. conclusion top ↑ the equitable project was a multi-country and multidisciplinary project, which sought to identity factors influencing access to health care for vulnerable groups in four african countries. the project was seen as an enjoyable and appropriate process by the team who have an acute awareness that they have responsibilities to continue analysing, publishing and disseminating results, and who look forward to working together in the future.the authors are aware that in commenting on our own team processes in this article, we are both the image and the reflection. others may view our work differently. this article has attempted to be reflective in a structured way: a less structured approach may have highlighted different themes and allowed greater scope for individuals to express their distinct views. we hope that other perspectives may yet be forthcoming. if, in conducting social research, we are ‘to be the change we seek’, then this requires a variety of reflective methodologies, none of which can be expected to offer a complete image or to position itself in an impartial or neutral space. nonetheless, we hope that the willingness of our own consortium to engage in this reflexive analysis will encourage other research teams to undertake similar ‘learning from doing’ assessments, and by doing this, help to identify good practices that would help research partnerships to achieve their aims. whilst recognising that a broad range of learning about project context, process and impact can be drawn from this particular project, we conclude by synthesising and highlighting 10 primary points of recommendation that have been noted by members of our consortium (further recommendations for future research nor capacity building are provided in appendix 3): • engender and nurture a consciousness around establishing joint ownership and participation amongst all partners of a complex research project, and allow them to see how they are interdependent. • ensure to have proposal development meetings with all potential partners in attendance so that they feel that they are part of it from the start. • enable leadership opportunities for all participating consortium partner institutions so that each can lead on some aspects of the project. • establish agreement on a publication protocol and an effective implementation mechanism through clear and open discussion, and publish the protocol on the project website. • include disabled people’s organisations and related civil society organisations as active members of the research team, each with their own dedicated funding. • provide opportunities to develop consortium partners’ research and research administration skills to enable them to meet european commission or other funding agency requirements. • accept that even with clear and unanimously agreed protocols, not everyone will abide by them and there is little to be gained by engendering conflict over these instances. • promote dissemination and influencing opportunities by including research-users at an early stage of the research: we used ‘consultation workshops’, gaining much insight and authenticating our consultative processes. • build funding for research-writing workshops and research-writing mentors into research proposals, targeted especially at less experienced researchers. • be well-prepared for project meetings, anticipate and try to address difficulties in private, be diplomatic in public and strive to retain the trust and respect of team members for each other. acknowledgements top ↑ the equitable project was funded by the european commission seventh framework programme (fp7) with the project title: ‘enabling universal and equitable access to health care for vulnerable people in resource poor settings in africa; grant agreement no: 223501’. we would also like to thank all those who allowed us to interview them, our colleagues who participated in data collection, and the stakeholders who gave their expert advice during our consultative meetings. finally we acknowledge other members of the equitable consortium. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions m.m.l. (trinity college dublin and stellenbosch university) conceived the article, designed the questionnaire, interpreted the data and wrote the first and final draft of the article. j.m.v. (trinity college dublin) produced the questionnaire, undertook quantitative data analysis and recorded qualitative responses. h.m. (university of melbourne) contributed to writing the article. all other authors, m.a. (ahfad university for women), g.m. (stellenbosch university), e.m. (trinity college dublin), e.a. (university of namibia), a.m. (university of malawi), a.h.e. (sinteff) and a.k.d. (african decade of persons with disabilities) made comments on the article. referances top ↑ amadhila, e., van rooy, g., mcveigh, j., mannan, h., maclachlan, m. & amin, m., 2013, ‘equity and core concepts of human rights in namibian health policies’, africa policy journal 8, 34–45.amin, m., maclachlan, m., mannan, h., el tayeb, s., el khatim, a., swartz, l. et al., 2011, ‘equiframe: a framework for analysis of the inclusion of human rights and vulnerable groups in health policies’, health and human rights 13(2), 82–101. braathen, s.h., vergunst, r., mji, g., mannan, h. & swartz, l., 2013, ‘understanding the local context for the application of global mental health: a rural south african experience’, international health 5(1), 38–42. http://dx.doi.org/10.1093/inthealth/ihs016 brannen, j., 2005, ‘mixing methods: the entry of qualitative and quantitative approaches into the research process’, international journal of social research methodology 8, 173–184. http://dx.doi.org/10.1080/13645570500154642 dube, a.k., maclachlan, m., amin, m. & mannan, h., 2010, ‘equitable access to healthcare and persons with disabilities’, presentation at khartoum, african union social affairs ministerial summit, 21–23 november. maclachlan, m., 2012, ‘community based rehabilitation and inclusive global health: a way forward’ statement to the united nations commission for social development, new york, 02 february. maclachlan, m., amin, m., mannan, h., el tayeb, s., bedri, n., swartz, l. et al., 2012, ‘inclusion and human rights in health policies: comparative and benchmarking analysis of 51 policies from malawi, sudan, south africa and namibia’, plos one 7(5), e35864. http://dx.doi.org/10.1371/journal.pone.0035864 mannan, h., amin, m., maclachlan, m. & equitable consortium, 2014, the equiframe manual: an analytical tool for evaluating and facilitating the inclusion of core concepts of human rights and vulnerable groups in policy documents, 2nd edn.,global health press, dublin. van rooy, g., amadhila, e.m., mufune, p., swartz, l., mannan, h. & maclachlan, m., 2012, ‘perceived barriers to accessing health services among people with disabilities in rural northern namibia’, disability & society 27(6), 761–75. http://dx.doi.org/10.1080/09687599.2012.686877 appendix 1 top ↑ appendix 1: equitable project publication protocol appendix 2 top ↑ appendix 2: reflections on the experience of working as part of the equitable consortium appendix 3 top ↑ appendix 3: equitable: recommendations for future research and capacity building footnotes top ↑ 1.all participant responses to the survey were provided anonymously. participants’ comments are therefore outlined throughout this article within quotation marks without demographic information of respondents for individual comments. abstract background heightened risk persons with disabilities living in institutions are more likely to contract the virus and have higher rates of mortality triage triage types value and worth the current south african context of care south african triage tools development of triage policies and involvement of stakeholders conclusion acknowledgements references footnotes about the author(s) emma l. mckinney interdisciplinary centre for sports science and development, community and health sciences, university of the western cape, cape town, south africa victor mckinney department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa leslie swartz department of psychology, faculty of arts and social sciences, stellenbosch university, cape town, south africa citation mckinney, e.l., mckinney, v. & swartz, l., 2020, ‘covid-19, disability and the context of healthcare triage in south africa: notes in a time of pandemic’, african journal of disability 9(0), a766. https://doi.org/10.4102/ajod.v9i0.766 opinion paper covid-19, disability and the context of healthcare triage in south africa: notes in a time of pandemic emma l. mckinney, victor mckinney, leslie swartz received: 08 june 2020; accepted: 09 july 2020; published: 18 aug. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract during disasters, when resources and care are scarce, healthcare workers are required to make decisions and prioritise which patients receive life-saving resources over others. to assist healthcare workers in standardising resources and care, triage policies have been developed. however, the current covid-19 triage policies and practices in south africa may exclude or disadvantage many disabled people, especially people with physical and intellectual impairments, from gaining intensive care unit (icu) access and receiving ventilators if becoming ill. the exclusion of disabled people goes against the principles established in south africa’s constitution, in which all people are regarded as equal, have the right to life and inherent dignity, the right to access healthcare, as well as the protection of dignity. in addition, the triage policy contravenes the united nations convention on the rights of persons with disabilities, which the south african government has signed and ratified. this article raises debates about whose lives matter and whose lives are ‘worth’ saving over others, and although the focus is on south africa, the issues may be relevant to other countries where life-saving resources are being rationed. keywords: covid-19; disabled people; triage policies; ventilators; icu admission; ethics of care; accessibility; south africa. background disabled people experience discrimination and hardship in all spheres of life, including employment, education and access to healthcare. in addition, disabled people are more likely to experience increased health needs, worse health outcomes and discriminatory laws, as well as stigma. these issues are likely to be intensified during the covid-19 epidemic (armitage & nellums 2020; kittay 2020; kuper et al. 2020). according to the united nations (un), disabled people are ‘disproportionately impacted by the covid-19 outbreak’ (un 2020:4). during disasters and epidemics, demand for life-saving medical equipment and interventions increases significantly, and decisions as to who accesses these are crucial. in this article, we provide a rapid review of the key issues emerging in discussions about covid and disability and discuss their relevance for triage and other procedures in south africa. however, the issues arising in south africa may be broadly relevant to other countries, especially lowto medium-income countries. the un’s disability-inclusive response to covid-19, published in may 2020, states that disabled people should be included in covid-19 responses, which is in line with international commitments. these include the united nations convention of the rights of persons with disabilities (uncrpd), the 2030 agenda for sustainable development and the agenda for humanity (2016) and the united nations disability inclusion strategy. the un’s stance emphasises that non-discrimination is a fundamental right for all people, and for this reason covid-19 responses must ensure that they are not biased against disability (un 2020). according to the uncrpd, disabled people have equal rights to access to healthcare, and any denial of healthcare or health services on the basis of disability is discriminatory (article 25 read with article 2). it further highlights that disabled people should receive effective justice on an equal basis with others (article 13). this raises the question as to why disabled people should not be regarded as equal in terms of access to ventilators and intensive care unit (icu) admission. decisions may be influenced by how society and policymakers regard disability, specifically the worth and value they attach to the lives of disabled people (emanuel et al. 2020; kittay 2020). kittay (2020) shared her concerns: rationing and triage and isolation protocols aggravate my already stomach-churning fear. even in the absence of overt discrimination, i and others like me must be concerned about the many ways discrimination is baked into standard practices and protocols. there are poison pills in seeming rational recommendations. (p. 1) ne’eman (2020:1) indicates that there is a real fear amongst disabled people that they will be overlooked, and suggests that they should object to having ‘second-class medical status’. however, there is both a local and a global disconnect between those who work on disability issues and are familiar with disability policies such as the uncrpd and healthcare workers, who are often not trained in or familiar with these policies (liasidou & mavrou 2017). as a result, there was a lack of in-depth understanding of and training about disability and human rights even prior to the covid-19 pandemic. this results in critical time opportunities being lost when rapid responses and intervention plans are being put in place (qi & hu 2020). at the time of writing, south africa is the epicentre of the covid pandemic in africa, with a disproportionately high number of cases in the western cape province. in some african countries, very few people, if any at all, will gain access to life-saving care in the context of the epidemic. for example, the only african countries to have more than five icu beds per 100 000 population are south africa, seychelles and egypt (ma & vervoort 2020), with approximately 3450 icu beds available in south africa (population approximately 59 million) for covid patients (nichols et al. 2020). complicating this, south africa remains a deeply unequal society, as we discuss below, which may render triage considerations more complex; in south africa there are resources but these are maldistributed, with far greater expenditure on healthcare provision in the small private healthcare sector than in the public sector, which caters to the bulk of the population (harris et al. 2011; mcintyre 2019; mcintyre & klugman 2003; mofolo, heunis & kigozi 2019). a recent research project has explored the question of how relatively greater prosperity in african countries may widen a number of access gaps between disabled and non-disabled people (groce, kett, lang & trani 2011); south africa is an interesting case to consider because of its persistent and enduring high level of inequality. before we turn specifically to the south african case, we review key issues about covid and disability that are currently being discussed. heightened risk according to pineda and corburn (2020), disabled people living in cities during covid-19 may be four times more likely to be injured or die than non-disabled people. they credit this not to disabled people’s inherent vulnerabilities, but rather to health policies, planning and practice that do not take the specific needs of disabled people into account. disaggregated data by disability for covid-related deaths are not, as far as we have been able to ascertain, currently available; a recent study conducted by the office for national statistics, united kingdom, in england and wales estimates the risk of death from covid-19 for people with disabilities to be approximately double that of people without disabilities (https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabilitystatusenglandandwales/2marchto15may2020). disabled people are at an increased risk of contracting covid-19 for a number of reasons, including difficulty with using basic protection measures and adhering to requirements set for social distancing. these difficulties include a lack of accessibility to water, sanitation and hygiene facilities. for example, the majority of disabled people live in homes without access to running water (groce et al. 2011; grut et al. 2012). furthermore, many homes that do have running water have taps and basins that are inaccessible to the disabled people living there. for other disabled people, the act of handwashing as per covid-19 guidelines is simply physically difficult or impossible. some disabled people require frequent physical contact with others to obtain the support they require (such as carrying, lifting or feeding by care assistants), which becomes challenging in the context of social distancing and self-isolation (kuper et al. 2020; mulibana 2020). other disabled people are at a higher risk of contracting covid-19 because of a lack of access to information regarding transmission and prevention of the virus, for example, healthcare information being broadcast in inaccessible formats, such as a lack of sign language interpreter, or the level of information being too complicated for someone with a learning disability to follow (kuper et al. 2020; mulibana 2020). some disabled people are reliant on skin-to-surface touch for daily life, for instance, feeling the buttons on an elevator for someone with a visual impairment. others, including those with psychosocial impairments, may reside in overcrowded or unsanitary institutional settings, which can increase their risk of infection. in south africa, during the initial stages of strict lockdown, vital disability-specific health services were not regarded as ‘essential services’, and this placed disabled people at heightened risk (mulibana 2020). health services such as sign language interpretation services for people who were deaf, assistive device and technology services, rehabilitation services, and therapeutic and developmental interventions were not regarded as essential (mckinney, mckinney & swartz 2020; mulibana 2020). the issue of south african sign language interpretation during covid-19 has recently been raised: the medical challenges deaf people experience are usually due to the fact that hospitals, doctors and nurses don’t know or understand sign language. the deaf patient therefore needs to rely on an interpreter which isn’t always possible due to availability and cost. (huisman 2020:1) in addition, some care homes and institutions for disabled people were closed, and disabled people were sent home to reside with their families, many of whom did not have the skills or knowledge of how to care for and stimulate their family members with disabilities (mulibana 2020). as mentioned earlier, there is a strong link between disability and poverty, which leads to the majority of disabled people residing in informal settlements in south africa, where the risks of contracting covid-19 are amplified (armitage & nellums 2020; emmett 2006; landes, stevens & turk 2020; un 2020). although disabled people are at heightened risk of dying if they contract covid-19, they are also ‘in danger of being de-prioritised for care’ (kuper et al. 2020:79). on 26 march 2020, the world health organization (who 2020) developed a document, considerations for disabled people during covid-19, that includes actions that need to be taken to ensure that disabled people are able to access healthcare services, water and sanitation services and public health information. however, the majority of these are not fully feasible in countries such as south africa. for example, suggestions are made to make purchases online to buy essential items such as food and medicines (who 2020:3). this suggestion is not suitable for the majority of disabled people in south africa, who do not have access to resources. the majority of disabled people cannot make online purchases as they have no credit cards or funds available, cannot access online shopping platforms because of a lack of internet or devices, or reside in informal settlements where deliveries are not made (emmett 2006; groce et al. 2011). disabled people are also encouraged to ensure that assistive devices, such as wheelchairs, crutches, walkers, transfer boards, white canes or other personal devices that are used on a daily basis, and especially in public spaces, are disinfected frequently (who 2020:3). however, this is also not possible for the majority of disabled south africans, who continually struggle to find money for food and simply do not have the funds available, or the ability, to purchase expensive cleaning products (mulibana 2020). in a recent interview, a woman wheelchair user who was the sole breadwinner of a household of six stated: most people buy one bottle of hand sanitiser, that will last them so long. we have to buy twice as much to sanitize my chair, too. it is so much responsibility. (huisman 2020:1) additional challenges, besides regular safety and social distancing concerns, include not being able to buy essential products because of inaccessible public transport systems (groce et al. 2011; heap, lorenzo & thomas 2009). disabled children are encouraged to continue playing, reading, learning and connecting with friends using telephone calls, texts or social media (who 2020:4). however, such activities may be extremely challenging when households have numerous family members all sharing a one-roomed dwelling with no food or electricity, let alone books or data to connect with friends (emmett 2006; grut et al. 2012). persons with disabilities living in institutions are more likely to contract the virus and have higher rates of mortality disabled people, especially people with psychosocial and learning impairments, are at an increased risk of contracting covid-19 as they are more likely than any other population group of comparable age to be institutionalised in nursing homes, psychiatric facilities, group homes, social care centres and even within prison facilities (landes et al. 2020; un 2020). at such institutions, there is often a heightened risk of spread of diseases and viruses because of challenges relating to implementing basic hygiene routines and maintaining social distancing, as well as limited access to accessible healthcare information, testing and appropriate healthcare provision (armitage & nellums 2020; landes et al. 2020; mulibana 2020; un 2020). according to recent statistics, people residing in institutions are experiencing high numbers of covid-19 infection, complications such as pneumonia and death (comas-herrera et al. 2020; landes et al. 2020; un 2020). it is for these reasons that covid-19 policy responses, including triage protocols, need to be inclusive of disabled people in their design as well as implementation. in south africa, those disabled people residing in institutions still in operation during lockdown are isolated from their family. relatives have been prevented from visiting their disabled family members to protect them from the spread of the virus and are only permitted to make contact via the telephone, which is not suitable for some disabled people (mulibana 2020). in a recent interview, a representative of autism south africa stated: i know a mom who has not seen her teenage son since the lockdown because the residential facility will not allow her to visit. she can only phone. this is frustrating because her teenage son does not have a full functional speech. this really shows the lack of understanding because how are you expected to have a conversation when your child does not understand social communication? (mulibana 2020:1) triage during settings such as disasters, when resources are limited and medical intervention and care are significant, healthcare workers are required to make decisions as to who can and who cannot access life-saving medical treatment. the prioritisation decisions are known as ‘triage’ and are most commonly used in emergency medicine situations, where there are many patients and few resources. during disasters, it is important that triage procedures be carefully decided upon to guide healthcare workers and standardise care (sztajnkrycer, madsen & báez 2006; white & lo 2020). triage is a necessary process where need outstrips demand, and it is essential that triage decisions be based on the best available evidence (auriemma et al. 2020; joebges & biller-andorno 2020). researchers and ethicists have learned from disasters such as hurricane katrina in 2005 and the haiti earthquake in 2010 and ascertained that there is an urgent need to establish clear triage policies that are standardised and assist healthcare workers in making life-or-death decisions (klein et al. 2008; sztajnkrycer et al. 2006). these triage protocols need to balance a number of competing considerations: healthcare workforce issues, duty to care, equal distribution amongst a population with diverse health needs, accountability of public departments and healthcare systems to serve the public interest, and preserving healthcare systems so that, after a disaster, recovery remains possible (klein et al. 2008; savin & guidry-grimes 2020). however, the implications of rationing life-saving resources during covid-19 result in a situation where ‘the principle of “equals should be treated equally” may no longer be applicable’ (mannelli (2020:364). in other words, choices will have to be made amongst people who are notionally equal, with some gaining access and others not. while there exists a consensus that factors including a person’s gender, race and wealth should not play a role in determining inclusion criteria for accessing life-saving medical equipment and interventions, there remains a debate about whether disability should or should not be a consideration factor (armitage & nellums 2020; emanuel et al. 2020). disabled people and their families are concerned that triage policies may devalue disabled people and exacerbate entrenched ableism within healthcare policy and practice. this, in turn, may lead to structural discrimination in the form of policies that directly or indirectly discriminate against disabled people (kittay 2020; mckinney et al. 2020; savin & guidry-grime 2020). amongst the difficult triage decisions to be made in any scarce-resource context are questions about who is most likely to benefit from interventions that are not widely available. from a public health perspective, it makes no sense to offer expensive and scarce resources to those unlikely to benefit from them, and it is indeed the case that some disabled people, by reason of impairments and health conditions, may fall into this category, as would be the case for some non-disabled people. it is another matter, however, to assume that simply because a person has an impairment, it is automatically the case that that person would be less likely than others to benefit from scarce health resources. triage should ideally operate as far as possible on the basis of evidence, rather than on the basis of assumptions about who can benefit. in writing about healthcare access in general for people with disabilities, it has been noted that it is important to avoid what has been termed ‘diagnostic over-shadowing’ (shakespeare, bright & kuper 2018; solomon et al. 2016). this refers to an assumption on the part of healthcare providers when treating disabled people that all health conditions experienced by them should be attributable to their impairments. by analogy, to make explicit or implicit triage decisions on the basis of disability status rather than on the basis of potential to benefit from treatment is a different, and problematic, form of over-shadowing. triage types it is important that triage policies be developed to provide clarity, consistency and fairness to decision-making relating to covid-19 (huxtable 2020). regarding triage types, there are a number of triage guidelines, which are broadly based on four main models, namely, utilitarian (doing the greatest good for the greatest number of people), egalitarian (allocation based upon need), libertarian (protection of individual liberty and patient choice, including social benefit) and communitarian (respect for social and cultural values); the aspect of life cycle (fair innings or years life saved) is also considered (armitage & nellums 2020; emanuel et al. 2020; savin & guidry-grimes 2020). the most current covid-19 triage policies as used in a range of countries focus on the utilitarian view of saving more lives and more years of life (emanuel et al. 2020; savin & guidry-grimes 2020). although the utilitarian view concentrates on societal good, it may place a burden of unacceptable sacrifice on individuals or groups of people, such as disabled people (white & lo 2020). this triage framework deals with a key question: ‘whose lives matter?’ here, people with underlying comorbid conditions are excluded, as they may require more healthcare intervention and resources than those without. white and lo (2020) suggest that these frameworks are ethically flawed, as the exclusion criteria used are selectively applied only to a specific group of people, rather than to all people who need critical medical care. in addition, this approach violates the principle of justice, as it applies different allocation criteria to separate groups of people and does not make clear what is ethically different from one group to another (armitage & nellums 2020; savin & guidry-grimes 2020). as kittay (2020:1) puts it, ‘benefits are not free-floating goods to be readily counted. benefits attach to people’. a recently published paper noted that more lives may be saved if medical health professionals are permitted to exclude people who require more resources. however, no matter what triage type is used, some people will be excluded from receiving life-saving resources, which will result in them not surviving (qi & hu 2020; mannelli 2020). value and worth when it comes to value and worth as a basis of triage, careful examination needs to be made as to whether the concepts of value and worth, however well-intentioned, may discriminate against disabled people (armitage & nellums 2020; emanuel et al. 2020; huxtable 2020). for decades, disabled people have been viewed as being inferior and their lives seen as less valuable than those of non-disabled people. disabled people have been pitied, shamed and discriminated against on the basis of their disabilities (savin & guidry-grimes 2020). negative views towards disability have led to injustices in many forms, such as exclusion from education, employment and access to healthcare (mckinney, lourens & swartz 2018; shakespeare 2017). when it comes to categorising and excluding groups of people, this may lead to some decision-makers feeling that the lives of disabled people have less worth than others and that their lives are ‘not worth saving’ (white & lo 2020:1773). eugenic views towards disability state that the world would be a better place if disability could be eliminated, whereas in direct contrast those holding a bioethical view see disability as being inherent in the human condition (garland-thomson 2012, 2017; shakespeare 2017). garland-thomson states that disability affects all and ‘reflects the truth that we will all become disabled if we live long enough and that every life, every family has disability in it at some time’ (2012:339). from a bioethical view, disability is a natural part of humanity and of diversity. eva feder kittay (2020), a professor emerita of philosophy at stony brook university and the mother of a daughter with a significant cognitive disability, noted in a recent article that, although her doctors said that her daughter has ‘no measurable iq’: [s]he lights up my life and the lives of those who get to know her. she loves her life, which is filled with music and joy. her calm, steady loveliness makes the world a more beautiful place. (p. 1) the current south african context of care on 15 march 2020, a national lockdown was declared in south africa. since then, covid-19 positive cases have continued to rise on a daily basis. as of 10 july 2020, 238 339 positive cases of covid-19 have been identified, with 3720 deaths having been reported. the number of covid-19 recoveries is currently 113 061, translating to a recovery rate of 47.4%; however, south africa is moving into midwinter and the number of infections is forecasted to increase significantly (national institute for communicable diseases [nicd] 2020b). of these statistics, 31.4% of south africa’s positive cases, and 2229 of the 3720 deaths, have been located within the western cape province of south africa, where the triage policy tool that will be later discussed has been adopted (nicd 2020b). there is a significant risk that as the number of cases rise, the healthcare system could be overwhelmed (nicd 2020a). this will result in urgent critical care triaging decisions having to be made in both the government and private healthcare sectors. although these decisions are crucial, they also raise significant ethical issues around who is able to, and who should be able to, access care (kittay 2020; kuper et al. 2020; singh & moodley 2020). regarding policy responses to the covid-19 pandemic in south africa, there are numerous considerations that need to be taken into account. many of these stem from the inequalities that were created during the apartheid regime, especially socio-economic disparities that are still felt today. for example, it is estimated that 55% of south africans, or 30.4 million, live in poverty. as we have noted, there is a strong link between disability and poverty (eide & ingstad 2013; groce et al. 2011; statistics south africa 2017). moreover, research indicates that in addition to prevalent prejudice related to race, gender and socio-economic factors, disabled people experience discrimination based on their disabilities. this includes a lack of access to education or appropriate support within schools (fleisch, shindler & perry 2012), lack of access to employment opportunities (mckinney & swartz 2020) and a lack of access to healthcare (maart & jelsma 2014; mji et al. 2017). as a result of the multiple levels of inequality, covid-19 responses are likely to have an unequal impact within differing contexts and amongst a diverse range of south africans, and these issues need to be consciously addressed (law trust chair in social justice 2020). the majority of disabled people live from hand to mouth and often rely on other people for care as well as limited social grants. throughout the covid-19 epidemic in south africa, critical questions will be raised regarding what criteria should be used to guide rationing decisions when the demand for ventilators and icu beds far exceeds the supply. existing critical care resource recommendations, though carefully thought out, may remain ethically problematic as they involve prioritising certain groups of people over others. it is important that such factors be considered during the designing of triage policies (sztajnkrycer et al. 2006; white & lo 2020). in countries where all people have equal access to transport, first-come, first-served policy is seen as a ‘fairer’ system of triage. however, in a country like south africa, this would not be ‘fair’ for most south africans, especially those who depend on an unreliable public transportation system. furthermore, this model would be even more discriminatory against disabled people, who cannot access most public transport systems or move freely within the south african built environment. moreover, with the majority of disabled people being unemployed, they would not be able to afford to have their own private vehicles, hire transport from friends, family or community members or even pay for (unreliable) public transport. for example, minibus taxis are the most popular and common mode of transportation in south africa. however, most minibus taxi operators will not stop along their busy routes to collect wheelchair users, let alone assist them to board and disembark the minibus taxi. if and when they do let them on board, operators are prone to charge wheelchair users a double fee, which they ‘justify’ because a wheelchair occupies the space of an additional paying passenger (heap et al. 2009; sherry 2015). in a recently published article, a reporter interviewed a south african wheelchair user about her experiences of using minibus taxi transportation during the pandemic: ‘fellow passengers are loath to help her for fear of contracting the virus by touching her wheelchair’ (huisman 2020:1). in addition, the national rail service, which represents the other preferred form of commuting, has been suspended because of the lockdown, so at the time of writing nobody is able to travel by train. although specific covid-19 policy responses within south africa have been developed to guide healthcare workers, including the national infection prevention and control strategic framework (department of health [doh] 2020), allocation of scarce critical care resources during the covid-19 public health emergency in south africa (critical care society south africa [ccssa] 2020a) and the coronavirus disease 2019 (covid-19) quick reference for clinical health care workers (national institute for communicable diseases [nics] 2020a), none of these documents speaks directly to disability. south african triage tools to prioritise access to icu facilities and ventilator support, the western cape government published the covid critical care triage and decision tool (western cape government 2020a) and the covid-19 outbreak response guidelines in april 2020 (western cape government 2020b). these documents provide healthcare workers with helpful standardised guidelines on the approach to managing the outbreak of covid-19 in the western cape. we unfortunately do not have information on the extent to which these guidelines are followed in practice, and practices may change even within the same facility, but the way in which the guidelines are framed is instructive. however, our concern is shared by the south african disability alliance (sada), and an investigative report has recently been submitted to the ministry of health (sada 2020), raising urgent concerns that disabled people will not receive equal access to care. the guidelines express three main objectives: maintaining a standard of quality critical care, directing scarce critical care resources as efficiently and efficaciously as possible and providing a coordinated and consistent approach for public hospitals across the western cape. the document states that it conforms to the ethical duties of non-maleficence (duty to do no harm and to prevent harm), distributive justice (fair distribution of benefits and burdens) and autonomy (the ability to make one’s own decisions). the triage policy allocation of scarce critical care resources during the covid-19 public health emergency in south africa is based on the principles of ‘saving the most lives’ and ‘saving the most life years’. it uses the clinical frailty scale, which includes a scale from 1 to 9, with 1 being those who are very fit and 9 including people who are terminally ill (from other causes) and approaching the end of life (ccssa 2020a). however, disabled people may not be given priority or access to icu care or ventilators because of the triage criteria discussed below. certain disabled people may be classified under category 4, ‘vulnerable’,which includes people who are not dependent on others for daily assistance but often have symptoms that limit activities, such as being ‘slowed up’ or being tired during the day. those who fall under category 5, ‘mildly frail’ (in the ccssa document there is an image of a person using a walker), are described as being those who require help with higher order instrumental activities of daily living (iadl), including finances, transportation, heavy housework, medications that would impact their ability to shop and walk outdoors independently, as well as preparation of food. people who are ‘classified’ as falling into category 6, ‘moderately frail’, include those who ‘need help with all outside activities and with keeping house’. this will include many people with disabilities who may have ‘problems with stairs, require assistance when bathing and may need minimal assistance (cuing, standby) with dressing’ (ccssa 2020a:2). according to the sada, the criteria of the triage document are claimed to be based on the prognosis of a patient. however, they believe that the issue of prognosis (and the implicit key question of whether a patient is likely to benefit from care interventions) is not sufficiently addressed and remains ‘completely subjective, without any regard to an evidence-based decision making process’ (sada 2020:3). they further state that the use of the clinical frailty scale does not take into account people with disabilities who may have a life expectancy equal to that of an able-bodied person, be very fit and yet be classified as severely frail because of a physical impairment. in addition, they state that this would be the same for a patient with intellectual disability, who may require full-time care and who would also be classified as severely frail (sada 2020). while disabled people scoring less than six will not be immediately excluded, they are still required to be prioritised via a second triage system based on the sequential organ failure assessment (sofa) scale, which is based on the prognosis for short-term survival, as well as the comorbidity scores for long-term survival prognosis (ccssa 2020a:1). combined, these scores prioritise people as ‘red’ (scores of 1 to 3); ‘orange’ (scores of 4 and 5) and ‘yellow’ (scores of 6 to 8). if one follows the triage protocol, people classified as red would receive priority in accessing ventilator support, while a person with a priority score of yellow would have the lowest priority in accessing a ventilator and would receive resources only if they were still available after all patients classified as red and orange had been accommodated (ccssa 2020a). if there are ties within the same colour grouping, then priority would be given to those youngest in age or individuals whose work supports the provision of acute care to others, together with lower priority scores. although there is no specific mention of disability, category 7, ‘severely frail’, describes those who are completely dependent for personal care, from whatever cause (physical or cognitive). even so, people who seem stable and not at high risk of dying (within 6 months) are included in this category. also included in this description is a silhouetted image of a person being pushed in a wheelchair, a symbol strongly associated with disability worldwide, to illustrate what category of person would be included in this group (by contrast, under category 1, ‘very fit’, the associated image is an upright silhouette of a person running). these images and the accompanying descriptions raise the question as to how people who are wheelchair users are perceived, especially within emergency healthcare situations. furthermore, which assumptions do they express about those disabled people who are completely reliant on personal care but who are healthy and are not expected to die within 6 months (mckinney et al. 2020)? as mentioned above, people with a frailty assessment score of less than 6 will not receive ventilators or be able to access the icu. they will instead receive a management plan, which includes isolation in a covid-19 isolation ward and discussions of end-of-life issues with next of kin. if a person’s health deteriorates or no improvements are seen, the triage plan moves on to ‘end-of-life care where palliative care teams will provide additional support and consultation’ (ccssa 2020a:1). since earlier versions of this article were written, the ccssa guidelines have now been updated. there is now a note added, which reads ‘[t]he clinical frailty scale (cfs) [sic] is not applicable in patients with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism’ (ccssa 2020b:2). this is a very welcome addition and an important one. the fact that it is a late edition, though, does show the conflation of disability and frailty in the original version, and the changes may not be fully clear to all using the guidelines. it also uses the term ‘learning disabilities’, which in south africa is often used as a term distinct from ‘intellectual disability’, unlike in britain, where the terms are synonymous. south african users of the guidelines may still regard people with intellectual disabilities as covered by the cfs.1 development of triage policies and involvement of stakeholders it is important that covid-19 policies and responses, and the implementation of these, be monitored to ensure that they are inclusive of all people, especially those from vulnerable groups, including disabled people. to do this, policies and responses need to be developed with ethical and legal input via a collaborative team of experts as well as stakeholders from government, academia and civil society (huxtable 2020). these need to be ‘multidimensional, multifactorial matrix decision-making processes’ that can be used by healthcare workers (klein et al. 2008:2). in addition, two-way communication between government and society is highlighted as being essential during covid-19 to ensure accountability as well as public buy-in and trust, which is formed via inclusive participation. citizens need to feel that their concerns have been raised and that their voices are heard (huxtable 2020; kuper et al. 2020; law trust chair in social justice 2020). in south africa, a working group consisting of social justice practitioners and activists from civil society and the academic community, such as the law trust chair in social justice, stellenbosch university, has been established and aims to assist the government in monitoring the implementation of the covid-19 policies. this working group focuses on identifying, reviewing and assessing covid-19 policies and responses to these policies, ensuring that they reflect equal enjoyment of all rights and freedoms, as well as the rule of law and peace for all people. the group aims to ensure responsiveness to the lived experiences of the most vulnerable communities across south africa to make certain that implementation does not undermine the achievement of equality, human dignity and advancement of human rights and freedoms for all, which also assists in creating social accountability (law trust chair in social justice 2020). stakeholder participation, specifically from disability organisations, has thus far taken the following form, to the best of our knowledge. the presidential working group on disability, which is an existing advisory body to the president regarding the implementation of disability policy, together with two disabled people’s organisations, sada and disabled people south africa (dpsa), joined a webinar hosted by the ministry of women, youth, and persons with disabilities on 22 may 2020 regarding the implementation of policy relating to covid-19 and disabled people. in addition, disabled people have been represented in the government’s covid-19 crisis committee. however, although interaction between these organisations and the state is taking place, questions as to what impact has been made in the lives of disabled people, and whether their needs have been included, have been raised (blind sa 2020; mulibana 2020; sada 2020). it has been stated that although covid-19 disaster management committees were established prior to lockdown, no inclusion of disability rights coordinating mechanisms took place and that overall, disability issues have been neglected in covid-19 disaster management responses (mulibana 2020; sada 2020). during a media briefing responding to the webinar hosted by the ministry of women, youth and persons with disability, an umbrella organisation for people with visual impairments, blind sa, stated that many of the commitments made by south africa’s president, as well as the ministry, have not been realised and that during covid-19 these will be given even lower priority. blind sa (2020) further stated that they were disappointed at the ministry’s response, stating that there were incomplete proposals from government in terms of ensuring disability mainstreaming and support. they wanted these addressed as a matter of urgency. when it comes to the application and interpretation of western cape provincial critical care decision tool, the western cape network on disability recently submitted an enquiry to the sada. a sada task team was established to review the tool, and the following issues were raised for investigation: the interpretation of the tool, the wider applicability of the tool to other provinces in south africa and the availability of international instruments offering guidance in critical care decision-making processes. the investigatory report made a number of recommendations to the minister for health, including the need for mainstreaming disability in respect of all covid-19 responsive programmes; for information to be made available and facilities, services and programmes made accessible to all disabled people; for constant engagement with the organisations representing disabled people to ensure meaningful participation throughout the processes of covid-19 recovery; for government and the sector to develop an accountability mechanism to ensure monitoring of progress in response to covid-19 recovery plans; for institutionalised patients to be provided with maximum support through institution-specific programmes, including preventive measures and testing; and finally for a meeting with the minister to be held (sada 2020). however, currently no feedback has been given from the ministry. conclusion while some countries may use triage criteria that are based on the perceived worth of a person’s life and their ability to contribute to society, which may discriminate against disabled people if they are viewed from a medical perspective of being ‘less able’, some current south african triage policies, in our reading, completely exclude many disabled people, especially those with physical disabilities. we understand that triage is always difficult and that the reality is that in south africa many non-disabled people will also not gain access to care. however, this overall contextual reality does not make irrelevant the broader question of discrimination against disabled people, which has always, to varying degrees, been a life-and-death issue but is now much more acutely so. the bill of rights, which forms part of the constitution of the republic of south africa (1996), states that all people, including disabled people, are equal, that everyone has the right to access healthcare services, that everyone has inherent dignity and the right to have their dignity respected and protected, and that everyone has the right to life. although all individual rights are subject to limitations under certain circumstances,2 if many disabled people are excluded from receiving life-saving support during covid-19, what will south africa look like after the pandemic? as ne’eman (2020:1) states, ‘[t]he ranks of the survivors would look very different, biased toward those who lacked disabilities before the pandemic. equity would have been sacrificed in the name of efficiency’. we cannot and do not pretend to have all the answers for difficult triage decisions, some of which are likely to be made informally and on the spur of the moment. nonetheless, we do believe that at this time, it is important that people be aware of the issues at stake. acknowledgements the authors thank the editor of the journal, dr charlotte capri, for her help, encouragement and support. the authors are also grateful to the anonymous peer reviewers for providing incisive feedback within a very short time frame. professors helene combrinck, peter raubenheimer and dean gopalan provided very helpful specialist commentary, also in a very short time, and the authors also thank professors bonginkosi chiliza, jacqueline hoare and jonny peter for facilitating their contacts with experts. the authors extend their gratitude to elise varga for her encouragement to write this piece. jacqueline gamble provided much-needed technical support. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions e.l.m. conceived, drafted and edited the article, whereas v.m. assisted in the critical revisions. l.s. verified the methods and conducted the final edit. all authors discussed the results and contributed to the final manuscript. ethical consideration this article followed all ethical standards for research without direct contact with human or animal subjects. funding information the authors received no financial support for the research, authorship and/or publication of this article. data availability statement data sharing is not applicable to this article, as no new data were created or analysed in this study. disclaimer the views the authors express in this article, and the conclusions they reach, are their own and not those of any other person, organisation or institution with which the authors are affiliated, nor the african journal of disability. references armitage, r. & nellums, l.b., 2020, ‘the covid-19 response must be disability inclusive’, the lancet public health 5(5), e257. https://doi.org/10.1016/s2468-2667(20)30076-1 auriemma, c.l., molinero, a.m., houtrow, a.j., persad, g., white, d.b. & halpern, s.d., 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change to the guidelines may have been made in response to changes in the british nice guidelines covid-19 rapid guideline: critical care in adults (nice guideline [ng159]; https://www.nice.org.uk/guidance/ng159). this guideline has in its critical care admission algorithm (https://www.nice.org.uk/guidance/ng159/resources/critical-care-admission-algorithm-pdf-8708948893) the following text: ‘any patient aged under 65, or patient of any age with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism: do an individualised assessment of frailty. do not use cfs score’. in our reading of version 3 of the ccssa guidelines, the nice recommendation that an individualised assessment of frailty be undertaken is not reproduced. this may possibly also lead to some confusion. 2. in the case of soobramoney versus the minister of health (kzn), case no. cct32/97, the constitutional court asserted that in the case of use of scarce resources, the state must apply ‘apply a holistic approach to the larger needs of society rather than to focus on specific needs of particular individuals within society’ (paragraph 31). introduction and background the african network for evidence-to-action in disability brief background of the current situation of assistive devices in sub-saharan african countries major themes that emerged from the fifth african network for evidence-to-action in disability conference papers reviewed for the special issue in the african journal of disability a brief overview on the two papers that completed the review conclusion acknowledgements references about the author(s) gubela mji centre for rehabilitation studies, department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, cape town, south africa anthony edusei kwame nkrumah university of science and technology, kumasi, ghana citation mji, g. & edusei, a., 2019, ‘an introduction to a special issue on the role of assistive technology in social inclusion of persons with disabilities in africa: outcome of the fifth african network for evidence-to-action in disability conference’, african journal of disability 8(0), a681. https://doi.org/10.4102/ajod.v8i0.681 editorial an introduction to a special issue on the role of assistive technology in social inclusion of persons with disabilities in africa: outcome of the fifth african network for evidence-to-action in disability conference gubela mji, anthony edusei copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction and background this article introduces the african journal of disability (ajod)’s special issue on disability and inclusion in africa: the role of assistive technology. the special issue comprises papers presented at the fifth african network for evidence-to-action in disability (afrinead) conference which focused on the role of assistive technology (at) in social inclusion of persons with disabilities in africa. the conference was held at kwame nkrumah university of science and technology (knust) in kumasi, ghana, in august 2017. the conference was a collaboration between afrinead, based at the centre for rehabilitation studies (crs) at stellenbosch university, as well as the centre for disability and rehabilitation studies (cedres) and the college of health sciences at knust. the knust college of health sciences, which holds a biannual conference, decided in 2017 to combine their efforts with those of afrinead and cedres to table one unified conference. this joint venture gave an opportunity to raise awareness about disability-related issues to the college of health sciences. the intention was to facilitate and influence a response regarding disability issues at knust, at a national level in ghana and beyond. the theme for this combined conference was influenced by the fact that at is being prioritised by the world health organization (who) through the global cooperation on assistive technology (gate) project. also, afrinead is working on promoting contextually relevant research to inform policy and practice in this area. at the time of the conference, the ghanaian government was focusing on the development of inclusive education policies to address the needs of persons with disabilities. furthermore, the conference took place in ghana when the country had demonstrated serious commitment regarding the domestication of the united nations convention on the rights of persons with disabilities (uncrpd) (un 2006). a conference focusing on at was particularly relevant for the african continent as there is a general lack of research evidence regarding affordable, accessible, contextual and relevant at, although at is central to the well-being and livelihoods of people with disabilities. this lack of evidence undermines possible efforts that could assist the inclusion of many people with disabilities from participating fully in society, especially in lowand middle-income countries (lmics). although many african countries have ratified the uncrpd, it is not clear how governments of these countries plan to include the intention of the uncrpd articles into policy and practice. the theme of this special issue of ajod is appropriate for the advancement of knowledge of at. the issue of at is seen as a fundamental need for persons with disabilities in order to access other rights and needs, like health, education, employment, independent living and social participation. the special issue on at, which is the first of its kind on the african continent, addresses the knowledge gap and will also stimulate further research and dialogue. it will also serve to publicise the important work conducted by afrinead researchers and provide readers with more literature from an african context, as the papers are based on primary research conducted in different african countries. the african network for evidence-to-action in disability the african network for evidence-to-action in disability is a flagship programme of the crs at stellenbosch university. formed and inaugurated in november 2007, this regional research network was born out of the realisation that good disability research on its own cannot change the plight of people with disabilities in africa but needs to embrace and combine strategic efforts of advocacy and activism, including the development of sustainable partnerships. it is the first network on the african continent that has focused on the issue of how disability research is translated into policy and practice for the realisation of the rights of persons with disabilities in africa (mji et al. 2009). the african network for evidence-to-action in disability works towards the obliteration of the silo operation of different stakeholders by using research evidence as a tool in combining efforts of relevant sectors. from the standpoint of afrinead, the challenge is clear, namely, translating research into evidence-based advocacy, policy, practice and products, particularly in the pan-african context, needs to be addressed systematically in a collaborative, co-ordinated, coherent and consistent manner (mji et al. 2009). it is only when this happens that research evidence can act as a springboard for human rights instruments such as the uncrpd. the african network for evidence-to-action in disability is increasing the participation of universities, disabled peoples organisations (dpos), business and civil society in the area of disability research within the pan-african region (kachaje et al. 2014). at the core of the aims and objectives of afrinead is the investigation into how disability research evidence influenced government. it also shows how that translated into policies, and then into practice to improve the lives of people with disabilities. the network points to one of its instruments for guidance, the convention on the rights of persons with disabilities (uncrpd), which has now entered into international law and is perhaps the most significant – moral and practical – step towards realising the rights of persons with disabilities. the convention seeks to address discrimination, change perceptions and combat stereotypes and prejudices. assistive devices feature strongly in the uncrpd, with articles 9, 19, 20, 25 and 26 giving clear indications regarding how to respond to the area of at for people with disabilities. the afrinead conference is organised according to the 50 articles of the uncrpd. after the 2007 conference, a team of researchers met to discuss the design and structure of the scientific component of the conference. because afrinead’ s focus was on the realisation of the rights of people with disabilities in africa, and many african countries have ratified the uncrpd, it stands to reason that the uncrpd was the instrument of choice to guide researchers when preparing abstracts and papers for the conference. the 50 articles of the uncrpd were combined to form eight areas of research, envisaging that presenters, through their papers, would generate evidence for these areas and thereby generate evidence for the uncrpd. these areas are: children and youth with disabilities education: early to tertiary economic empowerment development processes in africa: poverty, politics and indigenous knowledge systems health and hiv and aids systems of community-based rehabilitation wellness, sports, recreation, sexuality and spirituality research evidence and utilisation. the outcome of presentations from these eight focus areas is synthesised into conference recommendations that are presented at a plenary session on the last day of the conference. brief background of the current situation of assistive devices in sub-saharan african countries in sub-saharan african countries and other lmics, there are minimal to non-existent accurate statistical estimates on the availability of ats for persons with disabilities (pwds). generally, in lmics, the provision of assistive products is inadequate, with poorly structured systems in place to improve and facilitate service delivery (borg, larsson & östergren 2011; visagie et al. 2016b). most often in such contexts, responses frequently exclude the intended beneficiaries, especially if indeed undertaken by consultants unfamiliar with the country in question (maclachlan & scherer 2018). recent studies in southern african countries have documented that only 15% – 25% of pwds who need at have access to it (matter et al. 2016). matter et al. (2016) further highlighted that studies carried out on ats are not evenly distributed across the range of all impairments. the full range of ats are often not available or evenly distributed to people who need them (matter et al. 2016). both the challenges and limited successes that are reported provided a backdrop for the who gate project of may 2016. one of the main aims of the gate program was to increase access to high-quality and affordable assistive products or technology (who 2017). the gate initiative describes its aim as to dramatically increase the historically appalling rates of access to at, while also meeting the obligations of the uncrpd and sustainable development goals (sdgs). in africa, although there are many individual organisations advocating for ats as part of their activities, these initiatives are often focussed regionally and/or on a specific impairment or disability. there is no joint african initiative which looks at comprehensive at service delivery and all the related facets. systemic and institution-based bottlenecks related to the area of at require a multifaceted approach such as that of afrinead (maclachlan et al. 2018). the inclusion of researchers, disability activists and advocates, as well as government and civil society, renders an inclusive forum to tackle some of these obstructions through constructive dialogue at tri-annual conferences (mji et al. 2011). some of the discussions in afrinead conferences are related to some of the stigmas towards disability, which is a worldwide problem. others put stress on culture and valuable innate indigenous resources that could be harnessed to promote at systems. bringing cultural resources such as the collective support of ubuntu philosophy, with its strength of fostering harmonious relationships, has proven to be a supportive, empowering approach to at services (mji et al. 2011). in line with the who programme on at, it is the right time for afrinead and ajod to publish research on at from the african continent, both to inform audiences and to stimulate further research and practice in this area. the special issue provides policymakers from different sectors (education, health, social development and others) with consolidated evidence on the status of at for persons with disabilities on the african continent. major themes that emerged from the fifth african network for evidence-to-action in disability conference the timing of the conference in relation to the attention given by who and the gate programme to the area of at, as well as the need for member countries to demonstrate to the un how they have responded to uncrpd, was opportune. the conference came as a special opportunity that brought together professionals from the medical, allied health, pharmacy, science, social science and engineering disciplines together with organisations of persons with disabilities, which significantly improved the perceptions of most of these professionals regarding disability issues. the centre for disability and rehabilitation studies expressed appreciation of the opportunity to facilitate the hosting of the fifth afrinead conference by knust. not only did it offer an opportunity for the young graduates from the disability and rehabilitation studies programme to experience the feel of an international conference, but also to participate as presenters of scientific papers from their original research work. there were many benefits that ghana, through knust and cedres, reaped from the conference (the conference was well-represented starting from the office of the asante king, as well as the office of the president of ghana and related ministers). one of the conference outcomes at knust was an advocacy group called ‘advocates for disability-friendly knust’ – a for d-knust. membership of the group comprises staff from cedres and other lecturers and administrators from knust. the group has created a whatsapp platform to promote effective communication among its members, and has already elected its executives (afrinead conference report 2018). the fifth afrinead conference generated 12 keynote addresses that came from researchers, people with disabilities, government representatives and non-governmental organisations. sixty-eight papers were presented in the eight research areas. while many of the speakers were rehabilitation and medical professionals, their presentations were generally made from a stance that acknowledged that the rehabilitative potential of many interventions is limited by the lack of opportunities for disabled people to be included, and to be meaningful participants, in society. this mixture of papers concerned with ‘individual’, ‘medical’, ‘social’ and ‘emancipatory’ models was perhaps greater than at conferences outside africa, where the lines of demarcation and engagement are more distinct, and perhaps less problematic. as mentioned earlier, at, which was the focus of this conference, is seen as a fundamental need for persons with disabilities to be able to access other rights and needs like health, education, employment, independent living and social participation. hence, abstracts that did not focus directly on research of at, but rather on issues of inclusion of people with disabilities, were also accepted. for this editorial, the focus will be on the outcome that covers issues on at. table 1 lists key themes related to at that emerged from the eight research areas. table 1: key themes related to at at the fifth african network for evidence-to-action in disability conference. in summary, themes from the eight research areas focussed on the need for governments to play a role in enabling universal access to essential and affordable assistive devices for people with disabilities. there was a general concern about the high cost of imported assistive devices. it also became clear that more research is needed to determine the role of at in disability-inclusive development in africa. papers reviewed for the special issue in the african journal of disability nine papers were reviewed for this special issue and only two papers finally completed the review process and were approved by the reviewers for publication. there were many reasons why some authors could not have their papers reach the point of being published, some of which were: poor writing and research skills high authorship fees authors taking too long to respond to reviewers’ comments. a brief overview on the two papers that completed the review the paper presented by lyner-cleophas focused on the value of at for students pursuing studies and the role played by the higher and further education disability services association (hedsa) in south africa. the positive gains and existing gaps in disability inclusion in the higher education sector in south africa are highlighted. the paper further highlights the important role of at in fostering inclusion. the value of at in education as facilitators for access to information cannot be underestimated as we strive towards social justice in south africa and disability inclusion, particularly in the educational setting. the paper also emphasises the important role of networking across institutions to improve institutional knowledge and support to staff and students, with reference to ways in which barriers to learning can be overcome. the second paper accepted for publication, written by visagie et al., focuses on users’ perspectives on the at-info-map, a mobile application that maps at sources in africa. the who disability report states that around 15% of africans are living with disability and experts estimate that the majority are in need of at least one assistive device. lack of information about at is one of the barriers that makes it difficult, if not impossible, to access at. the at-info-map aims to address this information gap with a mobile app that links at suppliers with consumers in 10 countries in southern africa. this 3-year project (2016–2019) is led by the southern africa federation of the disabled (safod), in collaboration with dimagi (technology partner), stellenbosch university and the university of washington. conclusion although only two papers were accepted for publication after the rigorous process of peer review, they are very relevant and instrumental in providing information about the challenges and successes in the area of at within the african continent. the two papers highlight gaps that research and practice on at should focus on. on the other hand, the lack of scientifically sound papers and the capacity of authors to complete their papers for publication is a reason for concern in this area, especially given how critical at is for participation and inclusion of people with disabilities in all spheres of life. there is a need for researchers to be supported with skills and resources to advance at research in africa. on the part of afrinead, there is a need to ensure that presenters come to present at the conference while already working on the draft of their papers to be further developed for publication. there is also a need for the network to table either preor post-conference research capacity-building workshops to improve the research, writing and publication skills of afrinead delegates, as many of them are novice researchers coming from under-resourced backgrounds. acknowledgements the authors would like to thank the conference organising committee at kwame nkrumah university of science and technology (knust) and the centre for rehabilitation studies at stellenbosch university. they are also grateful to the review team for the support and excellent work they did in reviewing the nine papers. references afrinead secretariat, 2018, afrinead conference report, centre for rehabilitation studies, stellenbosch university, tygerberg. borg, j., larsson, l. & östergren, p., 2011, ‘the right to assistive technology: for whom, for what, and by whom?’, disability & society 26(2), 151–167. https://doi.org/10.1080/09687599.2011.543862 maclachlan, m., banes, d., bell, d., borg, j., donnelly, b., fembek, m. et al., 2018, ‘assistive technology policy: a position paper from the first global research, innovation, and education on assistive technology (great) summit’, disability and rehabilitation: assistive technology 13(5), 454–466. https://doi.org/10.1080/17483107.2018.1468496 maclachlan, m. & scherer, m., 2018, ‘systems thinking for assistive technology: a commentary on the great summit’, disability and rehabilitation: assistive technology 13(5), 492–496. https://doi.org/10.1080/17483107.2018.1472306 mji, g., maclachlan, m., melling-williams, n. & gcaza, s., 2009, ‘realising the rights of disabled people in africa: an introduction to the special issue’, international journal of disability and rehabilitation 31(1), 1–6. https://doi.org/10.1080/09638280802280288 mji, g., gcaza, s., swartz, l., maclachlan, m. & hutton, b., 2011, ‘an african way of networking around disability’, disability and society 26(3), 365–368. https://doi.org/10.1080/09687599.2011.560419 matter, r., harniss, m., oderud, t., borg, j. & eide, a.h., 2016, ‘assistive technology in resource-limited environments: a scoping review’, disability and rehabilitation: assistive technology 12(2), 105–111. https://doi.org/10.1080/17483107.2016.1188170 kachaje, r., dube, k., maclachlan, m. & mji, g., 2014, ‘the african network for evidence-to-action on disability: a role player in the realisation of the uncrpd in africa’, african journal of disability 3(2), art.#86, 5 pages. https://doi.org/10.4012/ajod.v3i2.86 united nations (un), 2006, convention on the rights of persons with disabilities, viewed 17 july 2018, from https://www.un.org/disabilities/convention/conventionfull.shtml. visagie, s., mlambo, t., van der veen, j., nhunzvi, c., tigere, d. & scheffler, e., 2016a, ‘impact of structured wheelchair services on satisfaction and function of wheelchair users in zimbabwe’, african journal of disability 5(1), a222. https://doi.org/10.4102/ajod.v5i1.222 visagie, s., eide, a., mannan, h., schneider, m., swartz, l., mji, g. et al., 2016b, ‘a description of assistive technology sources, services and outcomes of use in a number of african settings’, disability and rehabilitation: assistive technology 12(1), 1–8. https://doi.org/10.1080/17483107.2016.1244293 world health organization, 2017, global priority research agenda for improving access to high-quality affordable assistive technology, world health organization, geneva, licence: cc by-nc-sa 3.0 igo. introduction reframing mental health through lived experience inclusion methodology of global mental health peer network’s function evolving in the changing mental health landscape operational structure honouring professor leslie swartz acknowledgements references about the author(s) charlene sunkel global office, global mental health peer network, cape town, south africa citation sunkel, c., 2025, ‘a best practice of developing a global lived experience organisation’, african journal of disability 14(0), a1740. https://doi.org/10.4102/ajod.v14i0.1740 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper a best practice of developing a global lived experience organisation charlene sunkel received: 07 may 2025; accepted: 02 sept. 2025; published: 30 nov. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). introduction the global mental health peer network (gmhpn) is an international non-profit organisation committed to empowering people with lived experience (pwle) of mental health conditions to become catalysts for change on a global scale. founded by its chief executive officer (ceo), who is living with schizophrenia, gmhpn was born out of a mission to strengthen the voices of those marginalised in conversations about mental health and what affects them directly or indirectly. global mental health peer network was officially launched at the movement for global mental health’s 5th global mental health summit in 2018 in south africa. despite being in its early stages, the organisation quickly evolved from a fledgling initiative into a respected international entity, recognised for its expertise in lived experience and its significant contributions to shaping the global mental health landscape. from its inception, gmhpn has been driven by a powerful vision: ‘to empower those with lived experience of mental health conditions to become influential advocates and change-makers, actively reshaping global mental health narratives and policies’. this unifying vision has been instrumental in rallying support and driving meaningful action within the mental health community worldwide. professor swartz has dedicated his work to influencing national and global mental health discourse, emphasising that effective mental health policy cannot be designed in a government office devoid of the voices of those it impacts. he strongly supports the inclusion of lived experience in policymaking to create more pragmatic, accessible and compassionate services. he stands by the notion that systems are built not just for people but with them. the impact of his lifelong advocacy is profound and has contributed to a growing movement in south africa where organisations led by pwle are gaining traction and respect. it has encouraged a generation of researchers and clinicians to approach their work with greater cultural humility and a deeper sense of ethical responsibility. professor swartz’s work reminds us that mental health is not a puzzle to be solved by experts alone, but a deeply human experience to be understood collectively. by advocating for the inclusion of lived experience, he has championed a more democratic, equitable and ultimately effective vision for mental health, one where every voice is heard, and every story is considered essential to the map. this is how gmhpn’s work has been grounded in strong principles and a solid foundation that supports and advocates for a human rights-based approach to mental health, dignity, rights and inclusion of all individuals. it stands firm in its commitment to advocate for an integrated and holistic approach to mental health care that combines medical, social and human rights models to address the complexity of mental health conditions. committed to upholding international treaties and human rights instruments, gmhpn holds governments and stakeholders accountable for protecting the rights of persons with lived experience. the key thread that calls for action in transforming mental health care is gmhpn’s emphasis on the value of lived experience expertise, recognising both its experiential and monetary significance in shaping effective, empathetic and cost-efficient mental health initiatives that truly reflect the needs of those affected. reframing mental health through lived experience inclusion literature supports the critical importance of forming strong partnerships between professionals, academic institutions and pwle to advance mental health research, policy and practice. such collaborations are essential for creating more effective, inclusive and sustainable mental health interventions. lived experience expertise provides unique insights that complement professional and academic knowledge, ensuring that solutions are grounded in the realities of those they aim to serve (slade et al. 2012). this partnership model fosters co-production, where all stakeholders contribute equally, leading to more relevant and impactful outcomes (gillard et al. 2010). professor swartz has consistently argued that knowledge about mental health does not flow one way, from the academy to the community. instead, he champions a model where knowledge is co-created. this means involving pwle not as passive ‘subjects’ of research, but as active collaborators, helping to define research questions, interpret data and implement findings. this approach transforms research from a potentially extractive process into a participatory and empowering one. research highlights that involving pwle in decision-making processes improves the quality and acceptability of mental health services. for instance, their participation in service design and delivery has been shown to enhance user satisfaction and engagement, as services become more aligned with the needs and preferences of those using them (simpson, house & barkham 2014). additionally, lived experience perspectives challenge stigma and promote a deeper understanding of mental health conditions, which is crucial for reducing discrimination and fostering social inclusion (corrigan et al. 2012). academic institutions benefit from these partnerships by gaining access to rich, real-world data that enhances the relevance and applicability of their research. collaborative projects that include lived experience voices are more likely to address gaps in knowledge and produce findings that can be effectively translated into practice (beresford 2013). furthermore, such partnerships promote capacity building and empowerment among pwle, enabling them to contribute meaningfully to the mental health field (faulkner & kalathil 2012). by creating platforms for lived experience stories and taking them seriously as a form of evidence, professor swartz directly challenges the stigma and silence that so often shroud mental health conditions. when a person’s lived experience is valued, their humanity is affirmed. through interaction with pwle, professionals gain a deeper understanding of the complexities of mental health conditions, which can improve their practice and foster more empathetic care. collaborative approaches also encourage reflective practice, where professionals critically evaluate their methods and assumptions, leading to continuous improvement in service delivery (russo & beresford 2015). literature confirms that strong partnerships between professionals, academic institutions and pwle are not only beneficial but necessary for advancing mental health outcomes. these collaborations ensure that interventions are evidence based, contextually relevant and person centred, ultimately leading to more equitable and effective mental health systems. methodology of global mental health peer network’s function global mental health peer network’s methodology focuses on empowerment and capacity-building through targeted activities, including peer-to-peer mentorship, knowledge sharing and support. this aims to cultivate and elevate a cohort of experts by experience. global mental health peer network goes a step further by incorporating pwle into its experts by experience consultancy service, creating an additional structure that not only empowers its members but also supports their economic development through consultancy opportunities. by harnessing the lived experience expertise, gmhpn cultivates active engagement of pwle as pivotal collaborators in advancing both local and global mental health objectives. the significance of lived experience expertise in shaping policy, practice and procedural change in global mental health is accepted without contention. supported by a strong evidence base, international human rights instruments and global health and development frameworks, there is a clear obligation to ensure the meaningful and authentic involvement of pwle. it is through this that gmhpn has positioned itself to establish sustainable partnerships with stakeholders and allies to support and guide efforts to meaningfully and authentically include pwle in global mental health. evolving in the changing mental health landscape in a rapidly evolving world and a mental health landscape that demands adaptation to ongoing advancements in science, policy and practice, it has been essential for gmhpn to stay ahead of the curve. global mental health peer network’s work aligns with professor swartz’s approach that is deeply rooted in the principles of social justice, recognising that a purely biomedical model, which frames mental health conditions solely as a brain-based disorder to be medicated, is insufficient. it risks erasing the person behind the diagnosis, ignoring the profound impact of context, culture, poverty and stigma. when gmhpn first emerged in 2018, its primary focus was on advocating for the inclusion of lived experience perspectives in mental health discourse. initially, the network sought to amplify the voices of pwle and promote their active participation in decision-making processes. over time, however, gmhpn expanded its advocacy efforts to highlight not only the experiential value but also the monetary worth of lived experience expertise in mental health initiatives. recognising the profound contributions and impact of pwle, the network shifted its focus towards advocating for fair and equitable compensation and recognition of their expertise (see figure 1). figure 1: methodology of global mental health peer network: an evolutionary approach. in january 2025, gmhpn co-produced a remuneration framework aimed at accelerating progress in the equitable and ethical remuneration of lived experience expertise in global mental health, with funding support generously provided by kokoro and vitol foundation. global mental health peer network’s remuneration framework offers a practical approach to ensuring ‘equal pay for work of equal value’ for lived experience roles, aligning with global laws, guidelines, strategies, and collective advocacy efforts. today, gmhpn stands as a critical resource for stakeholders seeking guidance on how to authentically and effectively integrate lived experience perspectives into mental health policies, programmes and practices. through its advisory role, gmhpn continues to champion the meaningful inclusion and empowerment of pwle, ensuring lived experience voices shape the future of the global mental health landscape. operational structure global mental health peer network embarked on its journey as an innovative concept, initially lacking a clearly defined operational framework. this required ongoing adjustments as the organisation progressed. through this process, the organisation identified its our strengths and areas of greatest influence, concentrating our efforts accordingly. seven units currently exist in the organisation: global mental health peer network units are crafted to optimise efficiency, enhance productivity and achieve high-quality outcomes that resonate with our overarching vision and objectives: experts by experience consultancy services (ebe): through our ebe unit, we harness the transformative power of lived experience expertise by collaborating with diverse sectors across society. together with our country leaders, we work to elevate mental health and well-being, driving meaningful change in policies and practices to create a more inclusive, empathetic and hopeful future. peer-to-peer mentorship, education, empowerment and development (p2p): the p2p unit is a dynamic platform to grow and lead in global mental health advocacy, through tailored mentorship programmes, educational initiatives and skill-building opportunities. by cultivating a supportive and enriching environment, the p2p unit aims to develop a network of empowered advocates who play a pivotal role in influencing mental health narratives and policies across the globe. benchwarmers peer support (ps): the ps unit promotes mental health and well-being within our lived experience community. through peer-to-peer support, this unit provides a safe and empathetic space where members can openly share their experiences, challenges and triumphs in navigating mental health journeys. rooted in solidarity and understanding, the ps unit is instrumental in building a supportive network within gmhpn, where people uplift and empower one another. together, we strengthen community bonds, cultivate resilience and adopt a culture of compassion and shared understanding. young agents for change (ya4c): global mental health peer network’s ya4c unit recognises the pivotal role of young people as catalysts for transformation in mental health. this unit is dedicated to empowering, developing and supporting its young change agents, ensuring they have a significant voice in both global and local discussions and decision-making platforms. we believe in encouraging young people to become the next generation of leaders who will contribute to positive shifts in mental health paradigms. communications and awareness (c&a): the c&a unit at gmhpn serves as a dynamic platform to elevate the voices of pwle in the public domain. through strategic communication, we strive to share authentic lived experience narratives, creating awareness, understanding and meaningful change in the mental health landscape. through the c&a unit, the organisation drives initiatives that highlight the power of social contact in combating stigma and discrimination, which continue to plague the mental health field. focused initiatives (fi): global mental health peer network’s fi unit is committed to spearheading high-impact initiatives that are innovative and advance mental health and promote the integration of lived experience expertise into policy and practice. by focusing on strategic projects, this unit works to create a lasting and transformative impact on the global mental health landscape: from recognition to realisation: equal pay for work of equal value – lived experience expertise in global mental health: global mental health peer network developed a remuneration framework to address the significant gaps in guidance on fair and equitable compensation for lived experience expertise in mental health policy, research and services. little to no publicly available, evidence-based structure that standardises remuneration for the contributions of pwle exists, despite their growing role in shaping mental health initiatives. additionally, global stakeholders often lack clear direction on how to integrate and fairly compensate lived experience engagement and consultation within their work and projects. this framework aims to provide a structured and equitable approach to recognising and valuing the impact of lived experience expertise, ensuring that individuals are compensated fairly for their contributions while supporting meaningful and authentic involvement in the mental health sector. countdown global mental health 2030: in partnership with stellenbosch university, through professor leslie swartz, gmhpn embarked on an initiative to conduct an annual global survey to track progress in key areas such as reducing stigma and discrimination, improving the availability, accessibility and quality of mental health services, integrating lived experience expertise into policy and service development and advancing legal frameworks and human rights in mental health. partnering with professor swartz is crucial as it lends immense academic rigour, credibility and global standing to the initiative. his decades of pioneering research on stigma, discrimination and the ethics of mental health ensure the survey is methodologically sound, and its findings are authoritative. furthermore, professor swartz’s lifelong advocacy for centring lived experience legitimises the gmhpn’s mission within academic and policy circles. operational development and sustainability (od&s): the od&s unit serves as a mechanical component of the organisation and is focused on ensuring transparency, sustainable growth and innovation. committed to maintaining its global reputation, gmhpn continuously adapts to emerging developments and evidence, ensuring that the organisation evolves in step with the ever-changing mental health landscape. one critical aspect of the structure of gmhpn, constituted by a large group of people from diverse backgrounds, is having a team that sees beyond people’s differences and sees the potential and value of each individual. to truly harness the best in every person, there cannot be any power imbalances within any structure of the organisation, regardless of anyone’s title within the organisation. based on this, gmhpn is a community for pwle that enables every member to thrive. strengths a key strength of gmhpn is its unwavering commitment to inclusivity. the organisation actively welcomes and celebrates individuals from diverse backgrounds, cultures and lived experiences. this inclusive approach cultivates a profound sense of belonging, ensuring that gmhpn authentically represents the global community it serves. the best part of being involved in gmhpn …: ‘being able to connect with peers globally for mutual learning and collaboration.’ ‘feeling that i belong to a special and precious family.’ ‘meeting peers who are doing amazing work and studying inspires me to be my best self.’ global mental health peer network is proud to be a 100% lived experience-led organisation, fully governed and operated by individuals living with mental health conditions. bringing together members from all world regions, gmhpn provides a platform for sharing insights and recommendations that drive meaningful change in global mental health. its expertise is rooted in firsthand experiences of navigating mental health difficulties and systems that often lack comprehensive, person-centric care. by leveraging this unique expertise, gmhpn and its members have the power to challenge and reshape the status quo. grounded in the proven value of lived experience, gmhpn integrates its expertise into research, policy, service development, stigma reduction and the training of current and future healthcare professionals. the impact of this approach is evident across multiple levels, reinforcing the vital role of lived experience in shaping mental health initiatives. with its presence across all world regions, gmhpn has established connections, partnerships and networks with pwle and key stakeholders dedicated to advancing national and global mental health agendas. this extensive reach enables the organisation to facilitate knowledge exchange, promote best practices and establish collaboration, driving progress in mental health worldwide. professor swartz is a highly regarded partner who has gained respect among the lived experience community for his persistent advocacy that has been less about a radical overthrow and more about a profound, necessary correction: the insistence that the expertise of lived experience is not merely an addendum to mental health work, but its very core. work and impact with a global reach extending across nearly 70 nations, the gmhpn connects a diverse international community of peers. the organisation utilises a strategic digital footprint, hosting peer-led webinars, targeted social media campaigns, online resources and virtual support networks to democratise access to peer expertise. this effort is central to addressing stigma and promoting person-centred care in countries of all income levels. the success of this approach is evidenced by its empowerment and mentorship programme, which has supported a cohort of nearly 200 pwle. the programme demonstrates a strong commitment to inclusion, with beneficiaries comprising 63% women, 14% youth, 25% who identify as lgbtqia+ and 68% from lowand middle-income countries. global mental health peer network places a strong emphasis on empowering pwle to step into leadership roles. this empowerment serves as a powerful catalyst for change and self-advocacy, equipping individuals with the skills and confidence to lead both within the organisation and in broader global contexts. an open-door policy and effective communication are crucial to establish trust, honesty and respect and to create a unity that is able to drive change together: ‘not only is the gmhpn family very helpful, but they are also tremendously responsive and supportive. our contributions are valued. i consider this community a safe community for growth. another point i want to add is that cross-cultural perspectives on mental health add value to our learning curve. they are a key asset for personal development and growth and definitely give me a sense of belonging.’ global mental health peer network encourages pwle to identify deficiencies in the mental health system and accessibility barriers in community living and to share their ideas and solutions on matters that affect their mental health and well-being. the principle of ‘nothing about us, without us’ is crucial to advancing inclusive, effective and person-centred approaches. the firsthand insights of pwle provide a unique and invaluable perspective that can inform policies, practices and services, ensuring they are more responsive, empathetic and impactful. by actively involving those with lived experience, gmhpn not only empowers individuals to take ownership of their narratives but also challenges stigma and promotes a culture of understanding and respect. this collaborative approach enriches innovation, drives meaningful change and ultimately leads to better mental health outcomes, as solutions are rooted in the real-life experiences and needs of those they aim to serve. collaboration is at the heart of gmhpn’s approach. over the past 3 years, the organisation has partnered with over 150 initiatives and projects, working alongside a diverse range of stakeholders, including international non-profits, civil society organisations, donors and philanthropic entities, academic and research institutions, large-scale research projects, private sector companies, governments and international agencies. these collaborations have centred on leveraging lived experience expertise, with gmhpn members actively contributing to these efforts. much of this collaborative work is conducted through the experts by experience consultancy services unit, which coordinates and facilitates lived experience engagement and consultation services to a range of sectors and in various domains across the mental health landscape. this includes hosting mental health workshops and lectures, informing research and research processes, as well as contributing to the development of international reports and strategic plans focused on mental health and human rights. global mental health peer network also provides a safe and inclusive platform for pwle to share their journeys, experiences and recommendations. this enhances resilience not only among those sharing their stories and perspectives but also among those who draw hope and inspiration from these narratives. together, these efforts create a solution-focused approach. the best part of being involved in gmhpn …: ‘opportunities that being in the network have arisen. it has increased my confidence beyond measure. i never thought i would ever be working with the who and writing research papers. being the chairperson for the last term has been an amazing opportunity. i am so happy to be part of the network.’ global mental health peer network has been actively involved in the creation of numerous publications, information materials, policies, guidelines and position statements, all developed in collaboration with its members. through these collaborative efforts, gmhpn has been able to amplify the voices of pwle of mental health conditions, ensuring that their perspectives are reflected in key mental health discussions and policy developments. these publications have not only contributed to the global mental health discourse but have also served as valuable resources for policymakers, mental health professionals and other stakeholders seeking to implement more inclusive and effective mental health practices. the routledge international handbook of disability and global health (sunkel et al. 2024), of which professor leslie swartz is one of the editors, commissioned a chapter that is titled ‘integrating persons with psychosocial disabilities across sectors: meaningful and authentic inclusion in global mental health’. this chapter was co-authored by members of gmhpn and discusses the integration of persons with psychosocial disabilities (lived experience) in global mental health, highlighting the importance of their inclusion in research, policy, service development and delivery. it further highlights that progress remains slow because of obstacles such as stigma, discrimination and inadequate policies. perspectives from south africa, india, denmark and indonesia illustrate these challenges and showcase some positive advances, such as government initiatives and advocacy efforts. the chapter emphasises the need for meaningful and authentic inclusion, culturally responsive programmes and collaboration across sectors to ensure the rights and well-being of persons with psychosocial disabilities. honouring professor leslie swartz professor leslie swartz has shown a profound dedication to the meaningful and authentic inclusion of pwle of mental health conditions. at stellenbosch university, he has pioneered an influential annual workshop that integrates people with mental health conditions into the psychology training curriculum. during his career at stellenbosch, he brought together individuals with different lived experiences, a family carer and a psychiatrist to address the students by sharing unique journeys and perspectives. this initiative creates a space for students to interact directly with these individuals, using social contact as an educational strategy to combat stigma and foster deeper understanding. professor swartz’s innovative approach not only enriches student education but also champions dignity, respect and genuine inclusion in mental health training. his work represents a forward-thinking model for reducing stigma through personal engagement and shared experiences. through his involvement as editor of the routledge international handbook of disability and global health, he continued to honour his dedication to ensuring inclusion of pwle by providing gmhpn and its members the opportunity to contribute to this publication. professor leslie swartz stands as a global icon whose career has been dedicated to advocating for and empowering individuals with disabilities, particularly those with mental health conditions. through his groundbreaking work, compassionate leadership and unwavering commitment to social justice, he has amplified the voices of marginalised communities and championed inclusive policies that have transformed countless lives. his work has not only advanced academic understanding but also encouraged practical, real-world changes, ensuring that people with disabilities are seen, heard and afforded opportunities to thrive. as an innovator in his field, professor swartz’s legacy will endure long after his well-deserved retirement, continuing to inspire future generations to pursue equity and dignity for all. his contributions have cemented his status as a beacon of hope and progress in the global fight for disability rights and mental health advocacy. acknowledgements competing interests the author is the founder and ceo of the global mental health peer network, on which this article is based. author’s contribution c.s. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. quotations used in this article, were sourced from gmhpn’s annual impact survey conducted among members. the survey is designed to be anonymous, in order to encourage participants to share their experiences and perspectives openly and honestly. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of the author or that of the publisher. the author is responsible for this article’s results, findings and content. references beresford, p., 2013, beyond the usual suspects: towards inclusive user involvement, shaping our lives, london. corrigan, p.w., morris, s.b., michaels, p.j., rafacz, j.d. & rüsch, n., 2012, ‘challenging the public stigma of mental illness: a meta-analysis of outcome studies’, psychiatric services 63(10), 963–973. https://doi.org/10.1176/appi.ps.201100529 faulkner, a. & kalathil, j., 2012, the freedom to be, the chance to dream: preserving user-led peer support in mental health, together for mental wellbeing, london. gillard, s., simons, l., turner, k., lucock, m. & edwards, c., 2010, ‘patient and public involvement in the coproduction of knowledge: reflection on the analysis of qualitative data in a mental health study’, qualitative health research 22(8), 1126–1137. https://doi.org/10.1177/1049732312448541 sunkel, c., sartor, c., vashisht, k., stjernegaard, k. & sugianto, a., 2024, integrating persons with psychosocial disabilities across sectors, the routledge international handbook of disability and global health, pp. 282–292, routledge, london. russo, j. & beresford, p., 2015, ‘between exclusion and colonisation: seeking a place for mad people’s knowledge in academia’, disability & society 30(1), 153–157. https://doi.org/10.1080/09687599.2014.957925 simpson, e.l., house, a.o. & barkham, m., 2014, ‘the impact of user involvement in mental health research: a case study’, health expectations 17(5), 638–648. slade, m., amering, m., farkas, m., hamilton, b., o’hagan, m., panther, g. et al., 2012, ‘uses and abuses of recovery: implementing recovery-oriented practices in mental health systems’, world psychiatry 11(1), 32–39. abstract introduction and background constitutional reform and implementation of the convention on the rights of persons with disabilities implementation of the convention on the rights of persons with disabilities by government ministries conclusion acknowledgements references about the author(s) cowen dziva nehanda centre for gender and cultural studies, great zimbabwe university, zimbabwe munatsi shoko nehanda centre for gender and cultural studies, great zimbabwe university, zimbabwe ellen f. zvobgo nehanda centre for gender and cultural studies, great zimbabwe university, zimbabwe citation dziva, c., shoko, m. & zvobgo, e.f., 2018, ‘implementation of the 2006 convention on the rights of persons with disabilities in zimbabwe: a review’, african journal of disability 7(0), a389. https://doi.org/10.4102/ajod.v7i0.389 review article implementation of the 2006 convention on the rights of persons with disabilities in zimbabwe: a review cowen dziva, munatsi shoko, ellen f. zvobgo received: 11 may 2017; accepted: 05 apr. 2018; published: 22 oct. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the convention on the rights of persons with disabilities came into place in 2006, as the main instrument for advancing the human rights of persons with disabilities. for many african states, the convention came amidst ubiquitous marginalisation and discrimination of persons with disabilities. as expected, the convention has been hailed as a landmark in the struggle to reframe the needs and concerns of persons with disabilities. objectives: this article reviews the implementation of the convention by the zimbabwean government. method: the study relies on reviews of extant literature on disability rights. reviewed documents include the convention, constitution and other related national laws, policies and measures pertaining to disability rights. results: this article lauds the state for promulgating a disability-friendly constitution that resembles the convention to effectuate a human rights approach to disability issues. relatedly, the state came up with institutions that collaborate with research institutes and disability organisations to conduct research, provide services to persons with disabilities, raise awareness and advocacy and litigate for disability rights. conclusion: in spite of these efforts, this article shows that zimbabwe has yet to close the gap on the ideals of the convention, mainly because of limited resources amongst state-funded institutions for advancing disability issues. the government of zimbabwe is challenged to domesticate all provisions of the convention and to provide resources to institutions for progressive realisation of the rights of persons with disabilities. introduction and background on 13 august 2006, the united nations general assembly adopted the convention on the rights of persons with disabilities (crpd) and its optional protocol to promote and protect the rights of people with disabilities (pwds) (un enable 2006). the framework entered into force on 03 may 2008, after receiving its 20th ratification (un enable 2006). the crpd was adopted after continuous participation by various stakeholders – state and civil society as well as pwds themselves. for this reason the crpd is regarded as the first treaty that provides for an ensemble approach to the protection and promotion of the rights of an estimated 15% of the world’s population living with varied forms of disability (who & world bank 2011). the majority of pwds are found in the global south, where they experience exclusion, vulnerability to abuse and violence, lack of access to health services, employment, education, income, social support and civic involvement (mandipa & manyatera 2014; who & world bank 2011) and are more likely to experience multiple deprivations as compared to their non-disabled peers (mitra et al. 2014). the crpd confirms a paradigm shift from viewing pwds as recipients of charity to bearers of human rights and partners for achieving sustainable development. in essence, the crpd plays a dual role: as a development and a human rights protection instrument. the human rights role of the crpd is reiterated by the preamble, which underscores that pwds must fully enjoy all human rights and fundamental freedoms on an equal basis with others (crpd 2016). the crpd further defines ‘disability’ in a broad and inclusive manner, which indicates a model shift in approaches to disability. for this reason the crpd: … constitutes a shift from traditional ways of looking at disability as individual impairment to focusing on state obligations to dismantle a disabling environment and, in its stead, create an enabling environment which is inclusive and accommodates all human beings in their diversity. (ngwena et al 2013:vii) thus, the crpd is a comprehensive and well–thought-out framework with clauses meant to deal with the main challenges of pwds. the components of the crpd include the introductory part (articles 1 to 9), which defines terms and explains the purpose of the convention. specific political, social, economic and cultural rights of pwds are explained in detail in articles 10–30. this part is followed with implementation and monitoring mechanisms (articles 31–40). the convention ends with articles 41–50, which govern the operations of the crpd. a closer look at this synopsis shows the extent to which the crpd recognises, reaffirms or guarantees existing rights in the universal declaration of human rights of 1948. by so doing, the crpd did not create a new set of rights for pwds but rather confirmed that pwds are human beings equal to others, as their rights under the crpd are the same as other instruments. as such, the ideals of the crpd become compelling norms to be implemented by every state. principles of humanity are indeed fundamental and must be respected, promoted and fulfilled by every state actor and non-state actor in the global south. for the aforementioned reasons, the crpd came as a beacon of hope for millions of pwds in africa, who are the most stigmatised, poorest and least educated citizens (shome & tataryn 2008). this explains why the crpd received overwhelming support both during conceptualisation and ratification in the african continent. the initial working group that developed the framework included delegates from seven african countries: morroco, mali, uganda, cameroon, south africa, comoros and sierra leone (lord & stein 2013; un enable 2006). likewise, 16 african countries signed the convention on 30 march 2007, the first day the crpd opened up for signature, and 34 african countries ratified the treaty, putting it into force (lord & stein 2013; un enable 2006). zimbabwe ratified the crpd and its optional protocol on 23 september 2013 (mandipa & manyatera 2014). although this was more than 5 years after the convention had entered into force, the move confirmed the country’s commitment to recognise and advance the rights of pwds. as a state party to the crpd, zimbabwe assumed the obligations to domesticate, promote, protect and enforce the rights of pwds. as good as the vision of the crpd seems to zimbabwe, its directives require actions that go beyond mere ratification to effective implementation. that is the only way the convention can become a progressive framework to transform societies and bring an end to rampant discrimination and violation of pwds’ rights. ngwena et al. (2013) noted that the crpd creates a new vision of disability and inclusive equality, which must find its expression not merely in policy and law-making but through effective implementation. in concurrence with such an assertion meekosha and soldatic (2011) stated: while the crpd is a critical standard setting instrument for upholding disability rights, neither its signing nor ratification by nation states is sufficient to ensure substantial or rapid change. indeed, the efficacy of any international treaty that a nation ratifies lies in domestication and devising of innovative ways for implementation at local level. (p. 1384) it remains to be seen how zimbabwe has fared with the obligation to implement the crpd’s provisions for progressive realisation of pwds’ rights. accordingly, this article: takes stock of the implementation of the crpd in zimbabwe, focusing on how the 2013 constitution domesticated the crpd and the best practices by state institutions to implement provisions of the crpd, unearths challenges faced by state actors in implementing provisions of the crpd, proffers recommendations for action by state actors toward effective implementation of the crpd in zimbabwe. the article is based on a literature review of the crpd, the constitution of zimbabwe, journal articles and reports on disability and development in zimbabwe. the article comprises four sections, including the introduction and background. this is followed with a review of the constitutional reform and how it domesticated the crpd. the third section comprises a review of efforts to implement the crpd by national institutions. the last section concludes the discussion and presents recommendations for action in zimbabwe. constitutional reform and implementation of the convention on the rights of persons with disabilities in 2013, zimbabwe promulgated a new constitution to replace the 1979 lancaster constitution. whilst the 1979 constitution condemned discrimination against pwds, it only recognised physical disability, to the express exclusion of all other forms of disability affecting people in society. unlike the lancaster constitution, the 2013 constitution includes disability as one of the grounds prohibited for discrimination under section 56. although the provisions of the new constitution are an improvement, in part, the new constitution follows in the footsteps of the old constitution by deploring the discrimination of persons with physical and mental disabilities whilst leaving out persons with intellectual and sensory disabilities. there is therefore a need for zimbabwe to adopt the meaning of disability as proffered by the crpd. however, by enacting the new constitution, the government of zimbabwe has in part implemented the provisions of the crpd. that is so because, under article 4(a), the crpd directs the adoption of appropriate legislative measures for the implementation of the rights recognised in the crpd, and in article 4(b) it directs state parties to take all appropriate measures to modify or abolish existing laws that discriminate against pwds. the constitution further recognises the dignity, equality and rights of all human beings, including pwds, under its founding provisions. the constitution thus confers the duty of every human being to respect the rights of everyone, including pwds. according to mandipa (2013), the recognition of inherent dignity and equal worth of all human beings is especially crucial for persons with sensory (especially those with albinism), mental and intellectual disabilities, who endure being viewed as inferior human beings in society. indeed, the recognition of inherent dignity and equal worth of all human beings in the constitution of zimbabwe reflects the general principles found under article 3 of the crpd. the constitution (2013) under section 22(4) calls for agencies to take measures to ensure accessibility by pwds to all buildings, environments and transportation to which other members of the public have access. by so doing, the constitution implements articles 9 and 19 of the crpd (2006), calling for states to ensure that pwds participate fully in community life and also live independently. environmental accessibility addresses the challenges faced by pwds in moving around and living independent lives in society. most public and private structures are not accessible to pwds in zimbabwe (mandipa 2013). this may hinder the participation of pwds in public life, including their employment. whilst inaccessible infrastructure may contribute to hindering pwds from securing employment in government and private companies, it may not be the paramount reason for the unemployment of pwds. zimbabwe is a low income country that is experiencing economic difficulties, which have resulted in very minimal functioning of the industry and an unemployment rate of over 90% (zimstats & unicef 2014). it is, however, important that a mandatory clause be included in local government laws to ensure the issuance of a certificate of completion to public and private structures after satisfying the accessibility of the structure by pwds. the constitution (2013) under section 22(3)(c) encourages ‘… the use and development of forms of communication suitable for persons with physical or mental disabilities’. this is supported by section 62 of the constitution, which guarantees access to information for all human beings. the inclusion of sections 22(3) and 62 implements articles 4(1)(h) and 9 of the crpd, which encourages accessible information for pwds in society. whilst this proclamation by the constitution is commendable, section 62 is criticised for being silent on how persons with visual and hearing impairments can exercise this right (mtetwa 2012). another important constitutional clause for ensuring access to information is section 16. this clause makes sign language one of the sixteen official languages for communication in zimbabwe. the inclusion of sign language by the constitution is commendable, as zimbabwe’s policy regarding official languages always excluded a huge portion of persons with hearing and speech disabilities (mugumbate 2016). this section answers the calls by article 9(1)(b) of the crpd for state parties to ensure access to information and communications. the inclusion of sign language in the constitution is likely to contribute towards the development of this mode of communication, thereby striving for meaningful inclusion and participation of persons with speech and hearing impairments in society (mandipa 2013). as hurskainen (2002) noted, language is an emblem that switches individuals from misery to plenty, from backwardness to progress and from backwaters to the centre of life. whilst the inclusion of this right remains important for its development, resource constraints remain a real threat to realisation of this noble idea. in the judiciary circles, access to justice in courts is still compromised for persons with hearing disabilities because of a lack of sign-language interpreters (lord & stein 2013; mandipa & manyatera 2014). the constitution, under section 83, provides for elaborate rights of pwds. section 83 directs the state to advance pwds’ issues by coming up with measures: to enable them to become self-reliant, to enable them to live with their families and participate in social, creative or recreational activities, to protect them from all forms of exploitation and abuse, to give them access to medical, psychological and functional treatment, to provide special educational facilities for their education, to provide state-funded education and training where they need it. the inclusion of pwds’ rights under the bill of rights in zimbabwe’s constitution is a positive step towards showing the importance accorded to pwds in society. the move resembles the commitment by zimbabwe to address some of the challenges of pwds in socio-economic participation. pwds are excluded in matters of concern to them in society owing to inadequate assistive devices and inaccessible structures and environments. section 83 further speaks to the main challenges of pwds, who often face widespread discrimination, exploitation, violence, maltreatment, limited access to health and employment opportunities, and unequal access to credit and other productive resources to become self-reliant. pwds, and women in particular, are at an increased risk of experiencing violence, as they depend heavily on well-wishers and family members for survival and personal assistance as a result of limited educational and employment opportunities in scenarios where those who appear to assist may turn out to be assailants. thus, the inclusion of section 83 largely embodies a constitutional commitment to articles 16, 24 and 25 of the crpd, which address pwds’ access to health facilities and empower them to be self-reliant so as to escape exploitation and abuse. above all, the inclusion of pwds’ rights under the bill of rights in zimbabwe’s constitution strengthens accountability and ensures that pwds have access to remedies, which is a fundamental concept of human rights law. in including section 83, the constitution was mindful of the fact that pwds face challenges to enjoy the right to education. in guaranteeing state-funded education, the constitution addresses the challenges of many children with disabilities dropping out of school because of inability to pay fees (moyo & manyatera 2014). access to education for pwds advocated by the constitution remains fundamental for students with disabilities, as it is both a human right in itself and an indispensable means for the realisation of other rights. various studies on education concur that education is a gateway to a better future, as it increases prospects for better employment opportunities and ultimately improves life outcomes (moyo & manyatera 2014). whilst section 83 of the constitution resembles the crpd in protecting and advancing the welfare of pwds, some clauses within the same section are not exhaustive and lack conceptual clarity. there exists a clause in section 83 (rights of pwd) that contradicts the spirit of the crpd for adequate resources and commitment to advancement of issues that concern pwds. the section in question calls upon the state to come up with appropriate measures, within the limits of the resources available to it, to ensure that pwds realise their full mental and physical potential (constitution 2013:39). apparently this clause only addresses the rights of pwds and the elderly (section 82) and does not apply for other vulnerable groups such as women (section 80) and children (section 81). this clause limits the effective implementation of pwds’ rights. amidst serious economic challenges in zimbabwe, it is highly expected that the clause on section 83 will become an excuse for non-implementation of the ideals of the crpd by government agencies, citing financial problems and lack of resources. whereas articles 6 and 7 of the crpd prioritise the rights of children and women with disabilities, the constitution (2013) failed to specifically provide for such groups of society. children and women with disabilities require specific rights and protection as they face multilayered forms of discrimination. women with disabilities face double discrimination – firstly as pwds and secondly as women in a patriarchal society (du plessis 2007; mandipa 2013; un 2006). the plight of women with disabilities is also exacerbated by resource constraints and being powerless in society. economic dependency and prevailing social norms continue to prevent women with disabilities from combating societal discrimination (us embassy 2014). regarding children with disabilities, there is persistent prejudice and discrimination against them, mostly in rural areas, because of entrenched cultural views that disability is a result of punishment from god and ancestors. ensuing from this misconception, children with disabilities are despised and hidden from the public by their relatives to evade shame and stigma. in extreme cases, some parents strangle children with disabilities to death after birth; others sometimes hide them away when visitors arrive in fear of ridicule (mandipa 2013). thus, the overlooking of such engrained discrimination faced by women and children with disabilities by the drafters of the constitution leads to a contrast from articles 6 and 7 of the crpd, which provides for specific protection for these disadvantaged groups. the constitution resembles the crpd by including section 120, which provides for the political representation of pwds in the senate. courtesy of section 20(1)(d), two out of the 80 senatorial positions are reserved for pwds, who are elected by pwds through their various formations. the senators are expected to influence policy and law making that protects and takes into consideration the challenges of pwds in society. however, the inclusion of senators with disabilities has had a limited impact in enhancing the lives of the people they represent. it is a rare case when one finds a motion moved by these senators for the plight of pwds. since their appointment in 2013, the senators have not done enough to lobby for a disability policy. in addition, they have failed to lobby for quick alignment of the 1992 disability persons act, which views pwds using the damaging medical and charity models of disability. even with the presence of senators with disabilities, the ministry responsible for pwds received paltry budgets in 2014 (kachembere 2014), 2015, 2016 and 2017, just like before 2013 when parliament had no senators with disabilities. similarly, section 4a of the urban councils act (2008) implements the crpd by allowing for the appointment of special councillors, which may bring in councillors with disabilities in local governance appointed by the minister responsible for local government. the inclusion of special needs councillors is expected to ensure adequate promotion of pwds’ rights and welfare in local governance. unlike the constitution, which clearly stipulates the election of two senators, there is no specific number of pwds who should make up the 25% ceiling of special councillors to be appointed into local governance. the failure to specifically mention the number of councillors with disabilities amongst the 25% special councillors may also result in the exclusion of this disadvantaged group. special groups are numerous, meaning the minister may select special councillors based on age, gender; linguistic, ethnic and religious grounds whilst paying no attention to pwds. therefore, the urban councils act must be amended to clearly state the number of councillors with disabilities to be appointed amongst the special councillors. also important is the amendment of the rural district councils act to introduce special appointments for pwds in rural councils. adequate representation of pwds in both rural and urban councils can go a long way to ensuring that local government policies and service delivery become sensitive to the needs of this disadvantaged group. the crpd under article 33(1–2) calls for the establishment of independent national institutions to advance pwds’ issues. in line with this provision, the constitution of zimbabwe established the zimbabwe human rights commission (zhrc) in terms of section 242 to promote awareness and respect for human rights and freedoms of all human beings, including pwds. the commission is empowered under section 243(k)(ii) of the constitution to visit and inspect places where pwds are kept or stay and to inspect the human rights situation in such places. upon its operationalisation in 2004, the zhrc established a special interest thematic working group in accordance with the zhrc act to help the commission in protecting, promoting and enforcing the human rights of vulnerable groups in society, including pwds. together with other departments within the zhrc, the working group implements articles 8 and 31(1) of the crpd through research on and raising awareness of pwd issues. in 2015, the zhrc commissioned a baseline study on the human rights situation in zimbabwe, which revealed negative societal perceptions and attitudes towards pwds (zhrc baseline report 2015a). together with other national institutions, the zhrc has become an important institution for the protection and promotion of pwds’ rights in zimbabwe. the capacity of the commission to effectively implement the crpd, however, remains limited by resource constraints, just like any other grant-aided institution in zimbabwe. in 2015, just a year after its operationalisation in 2014, the zhrc reported limited support from government and high staff turnover caused by uncompetitive remuneration and the failure to honour contractual obligations of timely remittance of wages by the end of the month (zhrc 2015b). implementation of the convention on the rights of persons with disabilities by government ministries various government ministries, including the ministry of public service labour and social welfare (mopslsw), have also been crucial in implementing the crpd through ensuring that pwds can access welfare and basic needs. this has seen the implementation of article 28 of the crpd, which mandates that stakeholders ensure comprehensive social protection mechanisms for pwds. in performing this role, the mopslsw works with research institutes, disabled person organisations, ngos and other government ministries such as the ministry of primary and secondary education, which strives to ensure access to education for children with disabilities in line with article 24 of the crpd, which provides for pwds’ equal access to education. together, the two ministries administer the basic education assistance module (beam), which is meant to ensure access to education for vulnerable children, including those with disabilities and those with parents with disabilities. through beam, many beneficiaries realise their lifetime dream of accessing education in zimbabwe. important as the scheme has become, it only provides bursaries for students in special schools, as opposed to those in inclusive schools. this is promoting the sending of children with disabilities to special institutions as opposed to the inclusive education system advocated by the crpd. moreover, the scheme is also affected by underfunding, which results in beneficiaries sometimes being sent back home from schools because of unpaid school fees. without adequate funding for beam, many children with disabilities drop out as a result of failure to raise money for fees. furthermore, the ministry of health and child welfare provides assistive devices to pwds, including wheelchairs, spectacles, crutches, artificial limbs for those pwds in need of them and treatment creams for albinism conditions. like other ministries, the ministry of health and child welfare is under-resourced and normally fails to adequately provide for these requirements by pwds. as noted by eide et al. (2006), only a quarter of pwds who apply for assistive devices receive them, whilst the majority do not get them. against this background, the ministry of health has fallen short of the standards under articles 4 and 20 of the crpd to provide assistive aids and devices to all pwds in need of them. without access to the much-needed assistive devices, pwds’ mobility and independent lives as called for by article 20 of the crpd are compromised and schoolchildren with disabilities are likely to drop out from school. the government of zimbabwe also created the office of the special advisor in 2007 to advise the president and cabinet on disability issues. the special advisor’s office is the focal point that mainstreams and implements disability-related issues within the government. although questions have been asked regarding its mandate and appointment criterion (mandipa 2013), the office has become a focal point for coordinating disability functions within government. between 2013 and 2016, the office coordinated an annual national disability expo in a bid to provide a platform for stakeholders involved in disability issues to interact and share their experiences (lang & charohwa 2007; mandipa 2013; mandipa & manyatera 2014). in 2016, the office in conjunction with other stakeholders brought together concerned stakeholders to share information on the relationship between health and disability. the expo provided a platform that has proved to be an avenue for advocacy and raising awareness of challenges and opportunities for implementation of article 8 of the crpd in zimbabwe. the first office bearer, brigadier felix muchemwa, was appointed by the then-president of zimbabwe, robert mugabe. brigadier muchemwa passed away in 2016, and the office lay idle until the new president of zimbabwe, emmerson mnangagwa, appointed joshua teke malinga in 2017. this was an answer to the calls by article 33 of the crpd for states to create focal points within government for close and effective implementation of disability issues. through lobbying and advocacy by mr malinga’s office, the new government of zimbabwe endorsed the african charter on human and peoples’ rights on the rights of pwds of january 2016 (moyo 2018). the government of zimbabwe also implements the crpd through research and documentation of disability issues. in 2013, the ministry of health and child welfare commissioned a survey in all 10 provinces of zimbabwe entitled ‘living conditions among persons with disability’ to provide a comprehensive mapping for the lives of pwds. together with the national census of 2012, the studies revealed the various challenges faced by pwds to participate in socio-economic and political development in society. however, it is concerning to note that the national census of 2012 did not bother to reveal the numbers of pwds, their disability features and geographical location. consequently, the available statistics on the prevalence of disability are outdated, and from past studies conducted before 2005. the failure by the zimbabwe statistical agency to collect up-to-date statistics on disability issues contradicts the spirit of article 31 of the crpd, which obligates state parties to ensure the collection of appropriate information, including statistical data about pwds. in addition, non-prioritisation of disability issues during national censuses makes it difficult for policymakers to get information about this disadvantaged group of society and may result in their marginalisation when it comes to social protection mechanisms. the government of zimbabwe also works with non-governmental organisations and state universities to conduct disability research to inform policy formulation and implementation as stated under articles 4(f–g) and 31 of the crpd. state universities, including the university of zimbabwe and midlands state university, have established specialised departments to teach and research disability issues. in 2015, the great zimbabwe university also established the jairos jiri centre for special needs education to spearhead disability-related studies and research. the centre aspires to be the hub for transferring cutting-edge research and knowledge in special needs education. through teaching, holding of research conferences and publication of results, the centre implements articles 4(f–g) and 31 of the crpd. on the other hand, midlands state university through its faculty of law established the disability legal aid clinic in 2012 to advance disability rights. with financial support from university management and the open society initiative of southern africa, the legal clinic aspires to become a citadel of disability advocacy and litigation through awareness raising, empirical research and publication of disability issues (msu website 2013). on 04 and 05 august 2016, the legal aid clinic hosted the first ever clinical legal education conference to advance justice for pwds (msu website 2016). further, the faculty of law at midlands state university introduced a disability rights module to equip law officers with contours in disability and law discourse (chadenga 2014). this is in line with article 13(2) of the crpd, which calls for effective justice for pwds through appropriate training for administrative justice personnel, including law officers. there is no doubt that law graduates from the law school are catalysts for effective disability litigation and advocacy in society. conclusion by ratifying the crpd, zimbabwe committed herself to advancing pwds’ rights and gave impetus to implementation of the provisions and to holding government accountable for compliance with the convention. against this background, this article reviewed the implementation of the crpd in zimbabwe, through evaluating the extent to which the 2013 constitution incorporated provisions of the crpd and the extent to which government ministries addressed the provisions of the convention on the ground. notably, the 2013 constitution is an improvement from the 1979 constitution in terms of disability rights protection. in the same human rights spirit of the crpd, section 83 of the constitution confers human rights on pwds like anyone else in society. to some extent the constitution strives to domesticate provisions of the crpd and at least recognises, promotes and protects the rights of pwds as called for by the crpd. the study also applauds the creation of the zhrc and the office of special advisor to the president and cabinet on disability for the purpose of advancing human rights issues, including those of pwds. within the limits of the resources available to these institutions, the zhrc together with government ministries have made strides in advancing pwds’ issues. although zimbabwe has taken de jure steps to realise its crpd commitments, there are major challenges in terms of realising these commitments de facto. laws, policies and institutional frameworks are strong foundational instruments for realisation of pwds rights if they are exhaustive of this disadvantaged group’s critical needs and are followed with effective implementation mechanisms. this is because of the existence of vague and weak clauses in the constitution in relation to pwds’ rights, which is something that limits effective policy enforcement. there is also the challenge of resource constraints and the aforementioned lack of will by the government to support pwds’ issues. as such, government and the donor community must show commitment to pwds’ issues and fully support the cause. this article calls for the urgent domestication of the crpd, as well as review and alignment of all disability related laws that predate the constitution and the crpd. constitutional bodies and other institutions advancing the rights of pwds should be strengthened through adequate budgets. by so doing, the institutions will be able to effectively execute their mandate and bring about change on the ground. it is clear that the crpd places the primary obligation for implementation on state actors. hence, the government should make efforts to strengthen coordination of these tasks and to work hand in glove with other interested players to meet the obligations of the crpd, through awareness raising, service provision and research. the researchers of this article believe that if government works together in good spirit and faith with non-state actors, zimbabwe will go a long way towards ensuring that the crpd is effectively implemented to ensure that the rights of pwds are protected, promoted and enforced. acknowledgements this article was presented at the international conference on responses to disability, co-hosted by the great zimbabwe university and the jairos jiri association, at elephant hills zimbabwe in 2016. the authors, therefore, thank panellists at the conference and ajod reviewers for their insightful comments that helped to sharpen their thinking whilst writing the article. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions each author equally contributed to the research and writing of this article. references chadenga, s., 2014, southern eye, viewed 30 september 2016, from southern eye newspaper www.southerneye.co.zw/2014/04/03/msu-law-school-holds-disability-rights-day/ constitution of zimbabwe, 2013, amendment (no. 20) act of 2013, fidelity printers and refiners, harare. crpd, 2006, convention on the rights of persons with disabilities, viewed 20 september 2016, from https://treaties.un.org/pages/viewdetails.aspx?src=treaty&mtdsg_no=iv-15&chapter=4&clang=_en eide, a. & loeb, m.e., 2006, living conditions among people with activity limitations in zambia: a national representative study, viewed 19 september 2016, from https://at:http://www.sintef.no/upload/helse/levekår%20og%20tjenester/zambialcweb.pdf grobbelaar-du plessis, i., 2007, ‘the 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(eds.), 2013, african disability rights yearbook, pretoria university law press, pretoria, pp. 375–385. shome, s. & tataryn, m., 2008, challenges and successes in addressing the exclusion of people with disabilities from hiv prevention, testing and treatment, aids free world, new york, viewed 15 september 2016, from http://aids-freeworld.org/ourissues/disability/challenges-and-successes-in-addressing-the-exclusion-of-peoplewith-disabilities-from-hiv-prevention.aspx un enable, 2006, promoting the rights of persons with disabilities: full participation and equality in social life and development, united nations, new york. us embassy harare, 2014, human rights report, us embassy, harare, viewed 10 september 2016, from http://harare.usembassy.gov/reports/human-rights-report-2014--zimbabwe.html who & world bank, 2011, world report on disability, who, geneva, viewed 30 august 2017, from http://www.who.int/disabilities/world_report/2011/report.pdf zimbabwe human rights commission (zhrc), 2015a, a baseline survey on perception, attitudes and understanding on human rights in zimbabwe, zhrc, harare. zimbabwe human rights commission (zhrc), 2015b, annual report 2015, zhrc, harare. zimstats & unicef, 2014, multiple indicator cluster survey – labour force survey, government of zimbabwe, harare. abstract background inclusive education policies and challenges potential solutions – universal design and universal design for learning universal access, inclusion and higher education higher education programmes – four examples of challenges and solutions ethical considerations discussion recommendations conclusion acknowledgements references about the author(s) elizabeth m. dalton department of communicative disorders, university of rhode island, kingston, united states dalton education services international, hope valley, rhode island, united states marcia lyner-cleophas disability unit, stellenbosch university, cape town, south africa britt t. ferguson special education, national university, san diego, united states judith mckenzie disability studies division, university of cape town, cape town, south africa citation dalton, e.m., lyner-cleophas, m., ferguson, b.t. & mckenzie, j., 2019, ‘inclusion, universal design and universal design for learning in higher education: south africa and the united states’, african journal of disability 8(0), a519. https://doi.org/10.4102/ajod.v8i0.519 opinion paper inclusion, universal design and universal design for learning in higher education: south africa and the united states elizabeth m. dalton, marcia lyner-cleophas, britt t. ferguson, judith mckenzie received: 22 mar. 2018; accepted: 27 dec. 2018; published: 29 july 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract around the world, institutions of higher education are recognising their responsibilities to achieve the full inclusion of individuals with differing needs and/or disabilities. the frameworks of universal design (ud) and universal design for learning (udl) offer unique ways to build inclusiveness in our systems. the role of ud and udl to strengthen successful inclusion of persons with differing needs in higher education programmes is presented from literature, inclusive of national and international policies and resources. examples from south african and us institutions of higher learning are shared. discussions of online accessibility, environmental issues, professional development, barriers to inclusion and recommendations for future development in an international context provide a vision for developing inclusive learning environments in higher education. keywords: universal design; universal design for learning; universal access; inclusion; inclusive education. background around the world, institutions of higher education are recognising their responsibilities to achieve the full inclusion of individuals with differing needs and/or disabilities. international treaties and conventions, such as the un convention on the rights of persons with disabilities (2006) and, prior to that, the universal declaration of human rights (1948), have largely given impetus to the recognition of this inclusion of all people in society. the frameworks of universal access (ua), universal design (ud) and universal design for learning (udl) offer unique ways to build inclusiveness especially in our educational systems. rethinking design for inclusiveness stems from pioneering ideas about design by marc harrison who, as a child, sustained traumatic brain injury. his experiences in interacting with the environment brought about this re-envisioning of physical space. he later became a professor of industrial engineering at rhode island school of design and challenged the way design was created for ability and function according to the average person. ‘universal design’ as a term came into use by ronald mace only in the 1970s. he also challenged average practices regarding design. the center for universal design at north carolina state university, which mace helped establish, became the home of research around ud. seven principles to guide ud were later identified (burgstahler 2015). the seven principles of ud for designing products or services in the environment are as follows: equitable use; flexibility in use; simple and intuitive use; perceptible information; tolerance for error; low physical effort and size; and space for approach and use. by applying these principles, the use of products and services will be equitable for most people. the concept of udl stemmed originally from the ud principles, as well as from research in neuroscience on how the brain learns (rose & meyer 2002). universal design for learning applies the concepts of accessibility and inclusion beyond physical environments, to design teaching and learning opportunities in ways that are varied, accessible and engaging for all students, including those with differing needs and/or disabilities. in this way, appealing to the broadest range of diversity in our student populations, the framework of udl strives to remove discriminatory practices, as the learning needs of most students are taken into account when instruction is designed, thereby seeking to eliminate the need to ‘retrofit’ teaching practices with specialised accommodations. at the heart of udl are its three core principles for instructional design: multiple means of engagement, multiple means of representation and multiple means of action and expression (rose & meyer 2002). the natural variation present within all classrooms is recognised and taken into account during the instructional design process and is periodically reviewed using udl guidelines to check for efficacy of inclusive design (cast 2018). since the development of the udl framework for instructional design by cast, inc., in the 1990s, udl has been increasingly influential on educational systems and policies in the usa (essa 2015; heoa 2008) and recently has been receiving attention internationally (dalton 2018; dalton & lawrence 2010; dalton, mcpherson & anderson 2011). since 1996, following investigation of discriminatory practices in south african (sa) education because of the apartheid system, a more inclusive system of education has been sought. stereotyped attitudes, problems with accessibility and other challenges have made implementation of inclusive education quite elusive. south african professionals must engage with others in the field to learn different models and resources for implementing inclusion at all levels of education. to do so, knowledge and experience on methods and strategies to achieve inclusive education need to be sought. the experience and resources available in the usa in the areas of ud and udl are significant, as the country of origin for these concepts. it is logical to build collaborative relationships between education professionals of the usa and sa to share challenges and develop solutions. every two years, the international association of special education (iase) holds an international conference. attracting hundreds of professionals from all corners of the globe and all levels of education, this forum shares research, information and resources to support students with diverse needs and disabilities around the world. this opinion paper is based upon the authors’ collaborative presentation at iase 2017 in perth, australia, ‘inclusion, universal design and universal design in higher education’. the intention is to present concepts and examples of ud and udl and to discuss issues of barriers and potential solutions to help teachers, professors and others envision how they can take steps to reduce barriers to education in their own educational settings and build a system that is universally accessible and inclusive for all. inclusive education policies and challenges worldwide since the world declaration on education for all (unesco 1990) and the salamanca statement (unesco 1994), inclusive education has been a major focus worldwide. the dakar framework for action (unesco 2000) and policy guidelines on inclusion in education (unesco 2009) added strength and urgency to this discussion. specific core issues driving development of these actions include the (1) recognised need for access to education for all persons around the world, (2) recognised need for equity in educational rights and opportunities and (3) recognised right to receive adequate and appropriate accommodation and support for all students. with education’s movement towards providing general education for all students in the most ‘normalised’ environment, acquiring knowledge of inclusive learning and actually implementing inclusive education policies and strategies are critical for success. it is important to recognise, however, that educators’ and policymakers’ personal and professional understanding of inclusion around the world can vary greatly, depending upon where and who they are. united states ‘inclusion’ is an educational term commonly used in the usa, primarily as the result of educational practices rather than policy. inclusion, specifically, is not referenced in us laws governing general or special education (us department of education 1975, 2004). the us individuals with disabilities education improvement act of 2004 requires school districts to place students in the least restrictive environment (lre) appropriate for their needs. in schools, general classroom settings are the least restrictive of all. two federal civil rights laws, section 504 of the rehabilitation act of 1973 and the americans with disabilities act of 1990, define equal rights and prohibit discrimination based on disability. in order to achieve equal rights in us education, the practice of inclusion is now widely supported throughout public education systems and beyond. in the usa, inclusive education is understood as having students of all varied needs and abilities educated together in general classroom settings (according to lre guidelines), with the supports and services necessary for every student to receive educational benefit. this same understanding of inclusion may not, however, be common in other countries. south africa inclusive education first appeared in sa education policy post-apartheid, after many years of race, colour and class inequalities. schools were divided by race, disability and resources. traditional conceptions of disability prevented children from attending school. the education white paper 6: special needs education. building an inclusive education and training system (sa department of education 2001) introduced a new inclusive system of education recognising that learning needs may arise out of negative attitudes, stereotyping, inaccessible environments, inadequate policies and support services, and several other factors. this paper provided a broader framework that moved beyond the implementation, support and resource plans for inclusive education existing in sa. fifteen years later, a study on teachers’ perceptions of the implementation of inclusive education in school systems in sa revealed clear challenges (nel et al. 2016). challenges cited include: (1) inadequate teacher training on inclusive education, (2) inefficient support in schools and (3) education department structures and the lack of community engagement. clearly, while policies state the desire and need for inclusive education in sa, the realities of implementation make it an elusive goal. in higher education, the need to put a framework in place for disability inclusion was recognised and was put in place in 2018. this framework is the first document of its kind based on disability support for students who have left the basic schooling system. the strategic disability policy framework in the post-school education and training (pset) system (department of higher education and training 2018) outlines three strategic objectives for the pset sector. firstly, striving to create a standardised enabling environment in the pset sector to ensure systemic support based on the social model of disability is envisaged. secondly, accessible teaching, learning, recreation and a supportive environment is envisioned. this framework acknowledges the need to foster ua and ud by removing barriers. lastly, this framework strives to ensure coordination and cooperation across the various pset systems. potential solutions – universal design and universal design for learning in order to best address the growing need, interest and dedication to developing more inclusive learning environments across the educational spectrum, two key guiding concepts have been identified. universal design and universal design for learning offer guidance in the development and maintenance of accessible physical and learning environments for all students. universal design’s foundation is based on seven principles for designing accessible environments: (1) equitable use, (2) flexibility in use, (3) simple and intuitive, (4) perceptible information, (5) tolerance for error, (6) low physical effort and (7) size and space for approach and use (center for universal design 1997). additional ud information is available at https://projects.ncsu.edu/ncsu/design/cud/. universal design for learning is a curriculum and instructional design framework based in neuroscientific research and focused on how the brain recognises, processes, organises, evaluates and responds to varied types of information (meyer, rose & gordon 2014). its three core principles, specifically multiple means of representation, multiple means of action and expression and multiple means of engagement, are enhanced and clarified by the udl guidelines (hall, strangman & meyer 2003). while udl was first developed primarily to address instructional design in k–12 education, most recently cast and the udl implementation and research network have focused on the challenges of equity and inclusion at higher education levels. additional information and materials on udl guidelines, research, resources and udl in higher education are available at http://www.cast.org/. together, the principles and guidelines for implementing ud and udl provide practical tools to aid professionals in designing universally accessible classroom and online environments wherever educators seek to expand and implement inclusive instructional systems. universal access, inclusion and higher education the sa national plan for higher education (sa department of education 2001) encouraged the increased intake of students with disabilities and its white paper on post-school education and training (2013) focused attention on the pset sector. despite these efforts, effective inclusion in higher education for those with disabilities has been inconsistent. while disability supports for physical issues (i.e. as text conversion, braille, sign language, etc.) exist in most sa higher education institutions and in some technical vocational education and training colleges, difficulties regarding disclosure based on psychological and ‘hidden’ factors (de cesarei 2015) are prevalent. it is therefore important to develop a more universal approach to disability support systems in higher education, in part as a result of lingering effects of inequalities built during apartheid, as well as the inherent natural diversity of disabilities overall. some universities are moving towards ua policies focused on function and not disability by applying the principles of ud and udl (burgstahler 2015; center for universal design 1997; dalton, mckenzie & kahonde 2012; howell 2005, 2015). digital access and online learning platforms may, however, exclude those with disabilities because of adaptive device costs, extensive support needs and inaccessible internet design (perez, grant & dalton 2016; watling 2011). in order to ensure equity of access in higher education, universities and other post-secondary institutions must consider physical and programmatic access, content readability, personal usability and appropriate individual and system-based supports in order to achieve the goal of inclusive education. higher education programmes – four examples of challenges and solutions university of cape town, south africa while the university of cape town (uct) has an active and responsive disability service, the challenge of equitable access to the online learning environment remains. the technology that holds so much promise for increased accessibility contains within it the possibility of further exclusion of students who access text in different ways, especially those with visual impairment (schmetzke 2001). in the uct postgraduate diploma programme in disability studies, students with visual impairments faced specific accessibility challenges, especially in relation to learning online. these included the need for: (1) print resources to be accessible and on time, (2) appropriate assistive technology software to support access to online materials, (3) tests and quizzes to be accessible in a timely manner and (4) the lack of adequate home internet connections to support access. while significant steps were taken to mitigate these barriers, academic staff believe that such issues could have been avoided if udl had been used in designing a learning programme with all students in mind. moreover, changes that would improve online accessibility would have positive effects for students beyond those with visual impairment in providing access to the curriculum (howell, mckenzie & chataika 2018). what is needed is a systemic change at university level rather than within specific programmes. this is now starting to happen as library, information technology and disability services as well as academic programmes are collaborating to address online accessibility within a udl framework. stellenbosch university, south africa research on the challenges of students with differing needs and/or disabilities in higher education settings outside of the usa is relatively rare. a study of students’ experiences of inclusion and exclusion in higher education at stellenbosch university (su) revealed both challenges and strengths in the disability support system (lyner-cleophas 2016). challenges at su include: (1) insufficient planning for inclusion from the start from a disability perspective, (2) the need for disability to be viewed as part of the transformation occurring in sa society, (3) faculty and staff are not always disability aware, (4) existing subtle disability exclusion, as disability may be viewed as a disability office matter only and (5) some people think ud and ua are ideal and too expensive (lyner-cleophas 2016). strengths identified include: (1) some staff had knowledge of ua design and its advantages over retrofitting, (2) access to some assistive technology is available through the su disability unit, (3) the disability unit support team actively engages students and staff when difficulties occur and (4) inclusion access is as good for staff as for students (lyner-cleophas 2016). efforts continue by disability support personnel to provide awareness training and supports to broaden ua implementation at su. recently, a new disability access policy was developed at su (stellenbosch university 2018). this policy is not for students alone but applicable to students, staff and visitors to campus. universal design elements are considered as well as the notion of ua. the principles of ud are incorporated at policy level and applicable to the teaching and learning environments. these principles are the same for those indicated as ud principles at the start. this also involves reasonable accommodation and the practicality of what is possible given physical and financial constraints in sa reality. designing for all (and not people with disabilities only) is an idea that is setting in, as this is cost-effective in the long run and engages the diversity of people in more ways than just race and language. stellenbosch university is a campus in town and closely engages with the stellenbosch municipality with reference to access in physical spaces such as pavements and parking, which are mainly municipal competencies. the municipality has also drafted a ua policy in line with ua principles as it strives towards the broader inclusivity of people (stellenbosch municipality 2015). incorporating good practices starts with the acknowledgement of what is good for most people as well as instituting good policy frameworks. a value added to the stellenbosch university vision 2040 is the well-being of its staff and students. to this end, su strives towards creating an environment that is accessible to the broadest range of students, staff and visitors to campus. national university, united states at national university (nu), educator training programmes are primarily or partially online and must integrate california standards for the teaching profession and teaching performance expectations (tpes). recently revised tpes reference and address the concepts of udl. national university’s teacher education (ted) and special education (sped) programmes are working together to include these udl concepts in their curricula. faculty from ted are learning about udl and are anxious to infuse udl core principles through co-planning with sped. the nature and depth of udl will need to be thoroughly discussed and internalised by faculty, as it is essential that agreement is reached on what the acquisition of udl knowledge and skills will involve and how best to prepare nu’s teacher candidates in these principles. identification of exemplary practices in ud and udl, especially for inclusion of students with severe disabilities, is needed. ongoing, in-depth discussion of udl and the ud principles by faculty will ensure both learning and application of these principles by novice teachers. students who have identified disabilities, and who qualify, may be afforded additional accommodations to support their success. candidates’ needs are addressed by student accessibility services and may include note takers, extra time on examinations and interpreters for the deaf. all online materials are compliant with federal law regarding accessibility and therefore can be viewed and/or heard. university of rhode island, united states blended learning, through both online and face-to-face instruction, is growing in us higher education, and along with it come the challenges of establishing and sustaining equity and accessibility in online environments. at university of rhode island (uri), the online learning system, sakai, integrates many features to improve the accessibility of online materials. features include ‘how to make images more accessible’, ‘how to make videos and audio files more accessible’, ‘how to make links accessible’, ‘use of background and text colour’, ‘how to structure a document for accessibility’ and others. the udl framework is used to address the diversity of student learning needs. in one example, the framework of udl is applied in preparing speech language pathology graduate students through their course in augmentative and alternative communication (aac). this blended learning experience, inspired by udl principles, is hosted through the open-source sakai learning management system (lms). it uses multimedia resources, open-source materials, online learning tools and face-to-face classes to offer students multiple means of content representation and multiple means for demonstration of content competence through project-based learning and various online discussion tools. online reflection journals demonstrate students’ engagement with course content and with assignments using varied materials and assessments. students evaluated overall course satisfaction as very high. all students achieved high levels of academic performance in the course, as well. across the usa, institutions are recognising that inclusion and equity of access are a priority, and these institutions continue to need support in achieving greater accessibility. cast developed the website udl on campus to provide connections, guidelines and resources for higher education. a rich collection of information is available at http://www.udloncampus.cast.org. ethical considerations this article followed all ethical standards for carrying out research without direct contact with human or animal subjects. discussion the inclusion of students with disabilities in the mainstream of education, together with their non-disabled peers, has been clearly shown to be preferred policy in both the usa and in sa, as evidenced by the wealth of policy statements and legislation in both countries, as well as in worldwide policies and educational equity-related guidelines (americans with disabilities act 1990; department of higher education and training [sa] 2018; essa 2015; heoa 2008; sa department of education 2001; unesco 2000, 2009). while such policies, laws and guidelines have existed in both the usa and in sa for at least 15 years or more, the degree of implementation within and between these countries varies greatly. some of the variation may likely be because of the differing histories of the two countries, the strong influence of apartheid in sa for so many years, and differences in development and implementation of federal guidance for inclusion. in the usa, the challenges of racial, ethnic and disability-related discrimination continue to emerge and impact the educational systems, even with more than 40 years having passed since the passage of the rehab act of 1973, which first required equal access to education facilities and programmes for students with disabilities. in sa, while education white paper 6 (2001) provided a new vision for the inclusion of students with disabilities in mainstream education, it was not until 2018, with passage of the strategic disability policy framework in the pset system, that inclusive educational policies were articulated for higher education. while both countries continue to face challenges to the achievement of equity for all, the programmatic examples shared here from four different higher education institutions bear both similarities and areas of significant difference. the us higher education institutions cited both have robust lmss that support broad online instruction systems. these systems are enabled with accessibility features and guidelines that can be activated in order to present materials and instruction in an accessible format. the sa universities are not widely using such systems yet and are challenged to make individual adjustments and accommodations for each student in need. there will always be some level of need for providing customised modifications and accommodations for students with complex and/or unique learning challenges; however implementation of systems that have been designed to offer options for variation and accommodation for both teachers and students can greatly reduce the barriers faced by students with disabilities in higher education. use of systems that integrate accessibility options is very much in line with the concepts and principles of udl. there is emerging research-based evidence that ud and udl can positively influence the level and experience of learning for students at various levels of education (black et al. 2015; burgstahler 2015; katz 2013). literature also reveals some scepticism about the sustainability of impact of udl on the field (edyburn 2010). at the institutions in the usa and sa referenced earlier, it is clear that the both ud and udl are being embraced to help guide to some extent the development of more inclusive learning environments for all students. through the use of technology at uct, individuals with visual impairments can access and participate in professional development programmes that would otherwise have been inaccessible. in response to research conducted at su, the campus environment is increasingly aware of and working to remove the physical and instructional barriers existing for students with disabilities, embracing the ideas of ‘designing for all’. at nu, faculty development integrates instruction and support to bring udl integration into the curriculum, and the challenge of addressing ud and udl in state and national standards is receiving great attention. through the embedded accessibility features of the sakai lms and using a blended learning model to maximise options for multiple means of representation of content, engagement in learning and expression of knowledge through varied means, students in the aac course at the uri use multimedia, face-to-face discussion, online reflection with peers and project-based learning to complete course requirements, which are designed through a udl-inspired lens. as more and more institutions of higher learning take to heart their responsibilities to offer inclusive, equitable and non-discriminatory learning opportunities for all students, they are finding that the frameworks of ud and udl provide helpful guidance for the design of physical environments and instructional opportunities that are accessible and engaging to a broad range of learners from the start. resources such as the cast (http://www.cast.org), universal design for learning implementation and research network (udl-irn) (http://www.udl-irn.org), the inclusive learning network of international society for technology in education (iste) (http://www.facebook.com/isteinclusivelearning/), the udl special interest group of site (http://www.facebook.com/groups/siteudlsig/) and the national center for accessible educational materials (http://www.aem.cast.org/) offer a wealth of information, publications and professional learning opportunities to expand professional understanding and integration of udl. recommendations based on their individual and shared professional work, the authors offer the following recommendations for higher education: focus on the functional needs of students, staff and campus visitors and do not judge based upon labels used. students vary greatly in the nature of their needs, even within a particular area of disability. make inclusion and accessibility a campus-wide dialogue. everyone needs to be included in identifying the needs and the solutions. it is not an endeavour for the disability units or teaching staff only. build a systemic foundation using inclusive models for educational design, such as ud and udl, applicable to facilities management, teaching faculty, support services and admission procedures. leverage technology to support inclusion, rather than letting it become a barrier. reach out to others for ideas and help in addressing challenges. there are many great resources and organisations that support inclusive education principles, and we recommend that higher education institutions use them. note to professionals in 2019, the 16th biennial iase conference took place at sebastian kolowa memorial university in magamba, tanzania, east africa, from 13 to 17 july 2019. the theme was ‘empowering persons with disabilities: developing resilience and inclusive sustainable development’. information about iase, membership and biennial conference registration is available at http://www.iase.org/. conclusion the challenges to achieving comprehensive inclusion in higher education for students with diverse needs and disabilities are significant; however, tools, strategies, examples and guidelines exist that can lead to success, if applied creatively and effectively. the four university examples, based on experience, highlight some of the challenges and potential solutions. physical and programmatic inaccessibility, lack of timeliness, equipment mismatches and excessive costs can keep students from being adequately supported in their studies. lack of awareness, misunderstandings, lack of knowledge and training, and lack of resources are some of the reasons why higher education institutions and faculty are not sufficiently or appropriately supportive of inclusion. however, models for success in designing and implementing inclusive educational systems in higher education are emerging. new digital resources can be leveraged, and diversity can be celebrated rather than feared. faculties of teacher preparation and professional service preparation programmes around the world must embrace the idea that all upcoming teachers need to recognise, understand and embrace inclusive education practices. sharing professional experiences and practical ideas for implementation is a good place to begin. acknowledgements the authors acknowledge the following universities as their workplaces: national university, university of cape town, stellenbosch university and the university of rhode island. the authors also acknowledge the iase and its biennial conference, the impetus for the authors to collaborate on the article’s focus. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions the article was developed collaboratively by all four authors. initial content was developed in preparation for their presentation at the 2017 iase conference in perth, australia. following this conference, the authors collaborated online, using google drive and google docs, to develop, revise and edit the article together. e.m.d. wrote the introduction and sections on udl. policy and university sections focused on south africa were written by m.l.-c. and j.m. policy and university sections focused on the usa were written by e.m.d. and b.t.f. conclusions, recommendations, and references were developed collaboratively by all authors. information on iase was organised by e.m.d. funding no grants, equipment, drugs, and/or other forms of tangible or monetary support facilitated the conduct of the work described in the article or the writing of the article itself. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views expressed in this article are solely the views of the authors and do not reflect an official position of the authors’ respective institutions or other institutions. references americans with disabilities act of 1990, pub. l. no. 101–336, 104 stat. 328. black, r.d., weinberg, l.a. & brodwin, m.g., 2015, ‘universal design for learning and instruction: perspectives of students with disabilities in higher education’, exceptionality education international 25, 1–16, viewed 08 september 2018, from https://ir.lib.uwo.ca/eei/vol25/iss2/2 burgstahler, s.e., 2015, universal design in 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& society 26(4), 491–495. https://doi.org/10.1080/09687599.2011.567802 abstract introduction theoretical framework study methodology study setting study sample findings discussion strengths and limitations implications and recommendations conclusion acknowledgements references about the author(s) chioma o. ohajunwa department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation ohajunwa, c.o., 2022, ‘local knowledge in inclusive education policies in africa: informing sustainable outcomes’, african journal of disability 11(0), a941. https://doi.org/10.4102/ajod.v11i0.941 research project registration: project number: 18 689 original research local knowledge in inclusive education policies in africa: informing sustainable outcomes chioma o. ohajunwa received: 06 sept. 2021; accepted: 24 nov. 2021; published: 31 jan. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: this article presents on the outcomes of a study that focused on an analysis of inclusive education (ie) policies in south africa, ghana and uganda. persons with disabilities live within communities and are raised by the values that apply within their communal context. policymaking is intricately linked to policy implementation, and the inclusion of local knowledge strengthens policy influence, impacting on implementation processes. objectives: this research study explored the definition and foci of inclusion, whether local knowledge is included and how it is represented within the national inclusive education policy in south africa, ghana and uganda. this study reports on the outcomes of the second objective on inclusion of local knowledge. method: a qualitative, critical, interpretative and constructivist approach was utilised for the study. data were gathered through a desktop review and in-depth, individual interviews. results: there is inclusion of some local knowledge within the national policies; however, this is minimal and insufficient. participants argue that even when it is included, it is often embedded or implied, that local knowledge should be made more prominent within inclusive education policies as local knowledge is a community resource that supports policy implementation. conclusion: the inclusion of local community knowledge and ways of knowing within inclusive education policies is viewed as a critical and an integral aspect of policymaking. it will help to address the challenges of stigma and negative attitudes, promoting a continuity of knowledge that supports local values and well-being of children with disabilities and their communities. keywords: inclusive education; africa; local knowledge; policy; community; inclusion; schooling; sustainable. introduction there is an established connection between education and health, as education is a social determinant of health (albert & davia 2011; fatima 2011; ross & wu 1995). the attainment of high levels of education directly enhances a person’s state of health and well-being positively. studies conducted in europe, africa and other parts of the world have revealed a direct impact of the educational level of a person on his or her capacity to access economic and social resources that affect their quality of life (jude, houeninvo & sossou 2015; shankar et al. 2013; telfair & shelton 2012). ross and wu (1995), proposed three key areas where education also indirectly has an impact on our health and well-being work and economic conditions, social-psychological resources and health lifestyle. whilst not excluding the psychosocial impact of work and economic resources of income, the attainment of education is the most critical socioeconomic status related to health (ross & wu 1995). education and health are crucial factors to human capital development (appleton 2000), which shape opportunities and lived experiences of individuals, locating people within a trajectory in life. education is a precursor to accessing our socioeconomic rights and should empower and support communities to participate as citizens (underwood 2005–2006). the psychosocial issues of self-worth and identity formation and such related concepts are also impacted by this experience and positioning. therefore, education impacts our quality of life. the quality of life of persons with disabilities (pwds) is equally impacted by their access or lack of access to education, and pwds have historically experienced high levels of health disparities when compared with the general population (krahn, walker & correa-de-araujo 2015). the world report on disability (united nations 2011) estimated 93–150 million children with disabilities globally. of these children, 6.4% reside in africa, with less than 10% of all children with disabilities under the age of 14 attending schools. this is a dire situation, as the resultant effect of exclusion in education and consequently economic resources exacerbate poverty and have far-reaching impact on countries in africa (kickbusch 2001). this challenge is beginning to gain the attention of policymakers as evidence points to the link between education, civic participation, and overall well-being. the united nations convention on the rights of pwd situates the educational sector as a fundamental area to explore for the full participation of pwd (uncrpd 2006). sustainable development goal (sdg)-4 on education refers to values of equity, inclusion, diversity, equal opportunity and non-discrimination, positing education as a tool for building a moral and just society (engsig & johnstone 2015; magnússon, göransson & lindqvist 2019; unesco 2020). it is concerned with issues of diversity, equity and the building of a moral and just society as stipulated by the sdg above that we argue for the relevance of including local or citizen-generated knowledge into policy development. the policy document is a space of politics, contested values and negotiations (rata 2014). the language, text and focus of the policy document reflect ideological contestations that showcase government intentions regarding any sector (nugroho, carden & antlov 2018). policy documents do not exist in a vacuum, and they are informed by existing policies and/or context. policies are influenced by different ideologies that may portray opposing objectives and reflect the understanding and definition given to the focus of the policy. it equally reflects political intent, aim, priorities and strategies for implementation of its focus (canagarajah 2002). government policies frequently straddle different knowledge paradigms. the one paradigm is linked to the global capitalist political economy, whilst the other relates to the country’s own ideals and identity that the nation-state enshrines within its constitutions (rata 2014). these ideals in the constitution often emanate and are equally influenced by the push for the achievement of democracy and equity within the country’s citizenry. therefore, the country tries to balance the interests of global forces that it must gratify to some extent, and at the same time, both serves and perpetuates its own ideals within its citizenry (rata 2014). education is the place where these ideals are negotiated. even within inclusive education (ie), there are different understandings and interpretations, which indicate different value systems and prevailing understandings within specific contexts (holmes & crossley 2004; jones 2009; magnússon et al. 2019). these challenges are evident within the policy document and context, and different actors in the development of the policy document are likely to be in favour of different ideologies. therefore, there is no concerted agreement on one singular definition of ie because the understanding given to the concept is influenced by cultures and contexts. inclusive education is traditionally about education for all (unicef 2012). inclusive education is defined in this study as embodying philosophical frameworks and distinct understandings of the purpose of education. this is more than a set of strategies for educating learners; however, it includes attitudes, values and beliefs that go beyond the school to include the wider community and their local ways of understanding the world around them. local knowledge is defined here as a ‘cultural system which becomes common sense for people who share a communal sensibility’ (geertz 1983). local knowledge is positioned as more sensitive to local realities (boossabong 2017; smalley 2020), which can support implementation more than the direct importation of foreign and global ideologies that are presented as scientific facts but might not be relevant or suitable for local realities. inclusive education is about belonging, membership and acceptance (singh 2009 cited in ciyer 2010). therefore, the exclusion of or insufficient inclusion of local knowledge within the ie policy belies the statement given above. the inclusion of local knowledge as a policy mandate supports a continuity of learning for the child across the school and home contexts, and acknowledges the partnership of the home, school and community in the education of a child as given within ie principles. therefore, this study explored whether local knowledge is included and how it is represented within ie policies in south africa, ghana and uganda. theoretical framework this research study is situated within post-positivism (fischer 2002; fuller 2009) and informed by a critical, interpretative, constructive paradigm (boossabong 2017; boossabong & chamchong 2019) within a social justice framework, as is the tenets of ie which speak to equal participation, equity, non-discrimination and social justice. the critical policy analysis advocates for the inclusion of local knowledge in policymaking, emphasising the value that local knowledge brings to policy development, and the interpretive, constructivist analysis framework encourages the merging of various kinds of knowledge in policymaking and asserts that knowledge is pluralistic. this framework further hypothesises that the technocratic approach that has been normalised within policymaking contributes to a generic approach to policymaking (boossabong 2017) that takes inadequate consideration of local, contextual socio-cultural knowledge, and advocates for the inclusion of varied knowledge in policy development. therefore, within constructivism we are not excluding other forms of knowledge, but arguing for a holistic approach that includes and represents different kinds of knowledge, especially contextually relevant knowledge (ohajunwa 2019). study methodology a qualitative, critical, interpretative and constructivist approach was utilised for the study, as aligned to the postpositivist values that inform this study (boossabong 2017; boossabong & chamchong 2019). data gathering was performed in two phases. the first phase is a document review and analysis of national government ie policy and government statements according to the unesco global education monitoring report (2020) priorities for national policies. however, this study is focused on an outcome from the second phase, related to local knowledge inclusion within ie policies in the three contexts chosen for the study. the second phase of data gathering was carried out by conducting interviews and/or storytelling (chilisa 2012; easby 2016) to elicit historical narratives of place and context as aligned to the critical approach (ohajunwa 2019). focus group discussions were initially included but had to be removed because of the covid-19 pandemic, as people could not travel to spaces where they could meet as a collective. there was an attempt to have an online focus group discussion; however, participants could only go online at different times, and some struggled with connectivity within their context. data were gathered through telephonic one-on-one interviews and whatsapp calls (lo iacono, symonds & brown 2016). zoom and microsoft teams were also used, according to participants’ preferences (archibald et al. 2019). the platform supported confidentiality and protection of participant information, as noted by researchers and participants who have used zoom as an interview platform (archibald et al. 2019). the data were secured and saved in the clouds with a password known only to the researcher. the study methodology aligns with the postpositivist philosophy of ensuring multiple sources of data from various participants to gain a holistic sense of the phenomena, as knowledge is positioned here as socially constructed. study setting the study setting included south africa, ghana and uganda, which were from three different regions of africa (southern, western and eastern) were intentionally chosen for representation. therefore, individuals from these three countries participated in this study. study sample purposeful sampling was carried out, and through snowballing, potential participants were identified (creswell 2013) by approaching and collaborating with the african network for evidence-to-action on disability (afrinead) country coordinators. afrinead is a flagship project of the centre for disability and rehabilitation studies at stellenbosch university. afrinead supports the much-needed translation of research into evidence-based advocacy, practice and policy, particularly in the pan-african context by facilitating dialogue across stakeholders through their network of disabled people’s organisations (dpos), non-governmental organisations (ngos), and various community-based practitioners, policymakers and academics (ohajunwa et al. 2017). with this reach, the afrinead country coordinators were able to direct the researcher to dpos, policymakers and other persons of interest who could give rich information regarding the study focus. the ngos or dpos selected needed to be involved in at least one or all the areas below: the promotion of access to education for children with disabilities collaborations with schools and teachers aimed at supporting the successful implementation of ie engagement and advocacy with parent organisations or communities on the relevance of ie and policies government advocacy on ie and policies. a thematic analysis of data sets was carried out manually, and the findings related to the theme on inclusion of local knowledge are presented below. each data set was analysed manually, and units of meaning that speak to the research question were identified. these units of meaning were then colour coded, copied and put on an excel spreadsheet in separate columns for each transcript. the units of meaning with similar colours were further analysed and given a code; this was performed first for each transcript, and then across all the transcripts. as cross analysis occurred, all codes were put into categories, and outliers were identified, and new categories created as needed; this was ongoing until all codes were categorised. the final themes emerged from the categories. during data analysis, the units of understanding that cut across and aligned both the document review and interview analysis are given below: understanding of inclusion the foci of inclusion identification of historical narrative and contextual knowledge local knowledge inclusion and how it is represented within the national education policy and government statements on ie. table 1 shows the participants in this study across the three countries. table 1: the study sample according to the country. findings all participants (n = 25) agreed that it is very important to include local community knowledge within the policy document. they also reiterated the relevance of including local knowledge and ways of understanding to inform policy processes: ‘absolutely vital! you cannot have it without community input, local knowledge. otherwise, it’s not going to be applicable to the teachers, to the learners, to the community if you don’t have that. we’ve learnt that this doesn’t work. if you import things from other countries that are not applicable to our context, it’s going to fail. it’s not relevant. so, absolutely, it’s vital to have local community knowledge. it’s from the resources we use, the images, the pictures we have in our workbooks for our kids, it’s the examples that are used. if those are relevant and applicable… your janet and john work readings and books, i mean [laughs]. it is scary.’ (sa p1, inclusive education practitioner, higher education, 12 february 2021) ‘as long as we want to address the local problems of our people, it means definitely, their perspective of things should also be addressed or understood, understood first, then we have to find a way of addressing them. because sometimes, diagnosis of problems can be different from different angle. because you have not diagnosed the correct problems, sometimes you can only diagnose the correct problems by coincidence. but it is better that you actually seek out the views and the perspectives of these people, if a policy is going to address their problems.’ (ug p4, person with disability, ngo and community practitioner, 21 february 2021) ‘it’s [local or indigenous knowledge] very, very important, this is what is missing. to me, if you ask, this is the missing link. between the numerous policies we have vis a vis, the indigenous knowledge, you know, everything we do in life must have a root and the root must be based on our belief systems. [policymakers] must look for the traditional knowledge, look for the way we live, the way we do our things. right? then our way of life could be translated into the policies. so that when we are able to achieve this, it doesn’t become something like an imposition, something created somewhere else, then it’s been imposed on you.’ (gh p6, person with a disability, higher education, 24 march 2021) some participants felt that certain local knowledge are embedded with their national ie policy; however, they agreed that it is insufficient and should be more emphasised: ‘i think i would say there is definitely a space for community knowledge in ie. i mean, if i look at our current policy, we have a very western view of the child in our policy. ideas from the uk, canada, and probably in the us, i think, obviously, maybe australia, there’s very little of africa, you know, when we use the word ubuntu and that is that. okay, cover that box. we covered africa, we used ubuntu.’ (sa p9, inclusive education practitioner, 15 march 2021) ‘indigenous knowledge should be included when fully formulating policies like i said, you cannot underrate indigenous knowledge. which i must say that this is a policy we have currently, even though we have few of their representatives, but that is not enough.’ (gh p4, policy maker, 27 april 2021) ‘policy being a small thing which does not talk about everything, but in some way, there are some of those statements where local knowledge is embedded. because when we talk about attitude change at local, at the family level so that your experience can accept the child and be with the siblings – because all those things are what are in our curriculum. so i think some of those things are embedded, although somebody may not be able to see them very straightforward. we are talking about local knowledge here, this is how the policy is going, but later on when we unpack those strategies, i think that we have embedded them because it is very important local knowledge.’ (ug p6, policy maker, 06 march 2021) there was an impression that policymakers can be far removed from the realities of the citizenry and communities on ground: ‘like i told you earlier, if you look at the reasons as to why certain children are not actually going to school, these are not reasons which you can sit in an office and think about sometimes you have to actually go down there and look at them. then triangulate your information and look at the kind of design your policy is going to take the kind of shape it will take. so, i definitely think that local knowledge should actually be the first thing we actually say incorporating our policy is going to actually address problems of those local people, because we are not designing policies to work for us at the top. no, we are designing policies that should work to change communities and the ground at the bottom.’ (ug p4, person with disability, ngo and community practitioner, 21 february 2021) ‘it should be central. so it’s the same as saying that learner voice should be central. it’s the whole idea of you can’t make policies for people without including people in the policymaking process. it’s essential for participatory democracy. so, learners, communities, should be an integral part of deciding how they want to live, and how they want to be governed and how they want policies to be developed…so then it becomes in my view, government obligation to realise that that’s what the people want.’ (sa p10, inclusive education policy analyst, 15 february 2021) participants provided various reasons why it is important to include local knowledge, stating that the implications can be far-reaching, influencing even the curriculum, school and community. they insisted that including local knowledge would support more buy in from the community and support a contextually relevant and diverse curriculum for children with disabilities: ‘but also the school can learn a lot from the home environment activities in the home, how the home communicates with this deaf blind child, etc. so we have taken care of this i hope that when the document comes out of cabinet that they maintained this. all this comes out from considering the kind of culture the people in a particular area have, the kind of practices, what is possible to include in the school curriculum, how the curriculum can cater for their way of life.’ (ug p7, person with a disability, higher education, 25 january 2021) ‘so, we basically mean, so for me, that would be and i would really include children’s knowledge in community knowledge, you know, what’s happening in that particular community? what happens in that way that child lives? what are the elders saying? and the elders can be the grandmothers or the neighbours, you know, what are your neighbours saying? what, what’s allowed? what isn’t allowed? well, you know, what’s the issue around violence? you know, we think children are not aware that violence is happening around them, they are aware. yeah. and to me, there’s a lot of we’re not allowing that that information. and it’s not information, it’s embodied knowledge, almost, it’s embodied, it’s part of who they are. we kind of leave that at the door at school, like, okay, can you leave that there now and come inside? and that’s problematic.’ (sa p9, inclusive education practitioner, 15 march 2021) ‘community knowledge for me is the credible source we have to actually rely on when it comes to changing attitude, changing characters, changing systems, because for me, when you involve the community from the beginning, don’t think for them, let them bring out the issue and let them bring out the solutions. so, when they bring out the issues, they bring out the solution like i indicated, then they are they are now they’re watchmen or the security men should protect what they want to realize.’ (gh p4, policy maker, 27 april 2021) participants referred to the challenge of the negative stereotyping of and attitudes to disability within some african communities as problematic: ‘it’s such a difficult one because all we have known in this country is segregation. our whole history has been a history of segregation. and then we also have the added complexity of a lot of traditional knowledge of disability in particular being sort of routed in… sort of cultural traditions of understanding disabilities as curses and… so you know.’ (sa p10, inclusive education policy analyst, 15 february 2021) ‘we will need to work more with the teachers and continue with the sensitization because as you know as africans disability issues we don’t like it. these are the negative side we don’t want it near us. so, it is always difficult for people to terms.’ (gh p2, policy maker, 17 february 2021) ‘and when they come out of their house where do they pass? they’re passing through the community. has the community really prepared that path or that road? the people they are meeting, if they are going to say “oh look at that hooligan,” “look at that moron,” if they use that language… transiting from his home to school and people are naming mean names, they’re beating me, throwing stones on me because i am either disabled or albino or whatever, then it will interfere with my learning. then after school, out to the outside. so it is very important, local knowledge, local understanding or whatever plays a big role.’ (ug p6, policy maker, 06 march 2021) however, they believed that despite these challenges, including local knowledge could only inform these challenges of stigma and would make policy implementation more achievable on ground: ‘this kind of local knowledge should actually be incorporated in the policy. and i think it will go a long way, in terms of facilitating education, ie for our children, because the problems you’re dealing with actually, coming from down there, those negative perceptions about why certain children may not be able to go to school, i think they should be incorporated [addressed]. but at the same time, when you talk about the local knowledge, it still goes down to even the other players, like the teachers, because i take teachers will also be from, from the local the localities, in our communities, what are the issues regarding how they’re able to teach these children.’ (ug p4, person with disability, ngo and community practitioner, 21 february 2021) ‘within our beliefs, and then what they believe in then, we include them in the whole policymaking. they [the community] feel part of it, and therefore, they will be able to help us implement this, because we have also considered them.’ (gh p1, inclusive school educator, 23 march 2021) ‘i just don’t think it will assist, i think it is essential [including local knowledge]. i think like really it is a huge gap. say for example, children with disabilities. we know that there are negative sides of it. lots of stigma and discrimination around children with disabilities. and that can affect children actually coming to the school and being part of the school because the parents don’t actually feel like they can bring the child to the school. so that is a negative impact of local knowledge and if one understands that, then one would be better able to do that.’ (sa p7, inclusive education practitioner, higher education, 12 february 2021) ‘there is an education that gives you skills to be able to get a living, sustain a living income, but there is an education for life that starts from the home, where your, your attitudes to life, your worldview is shaped by your parents, and the education at home. and the school can only build on the foundation of what your parents have laid in your life. yes, a crab doesn’t give birth to a bat.’ (gh p7, inclusive school educator, 24 march 2021) in uganda, participants confirmed that a stronger focus on the link between a school and home has been more emphasised within their current ie national policy, and all participants stated that there was wide consultation regarding ie policies in their respective countries. local communities were often represented through dpos, ngos, traditional leadership and religious leaders; however, still the local realities differ from policy directives: ‘one of the areas where reform emphasis has taken place in the national curriculum for education in uganda is use of indigenous cultural practices. in the process of developing the current draft of the special needs and ie policy, we made emphasis on participation of parents. so, we have emphasised the use of home-school partnerships in this policy.’ (ug p7, person with a disability, higher education, 25 january 2021) discussion value placement on local knowledge three types of knowledge influence policymaking, and this knowledge is not mutually exclusive as they often co-exist to varying degrees within the policy processes scientific knowledge (experimental, quasi-experimental, ethnographic and case study), professional knowledge (bureaucratic, intermediary and activist) and local knowledge (citizen, religious, cultural and experiential) (nugroho et al. 2018). knowledge is ranked according to certain categories. these are knowledge types: institutional arrangement of knowledge, methods in knowledge creation and forms of knowledge, local knowledge is always ranked lowest in comparison with other types of knowledge (nugroho et al. 2018). therefore, local knowledge is very often the least supported within the knowledge-to-policy realm, although it is critical as the knowledge ‘on ground’, which is traditionally the space for the experience of the gaps in policy implementation. local knowledge, also referred to as citizen knowledge (jones et al. 2013) or experiential knowledge, is concerned with the same issues as scholarly research but utilises a different lens and meaning making that are informed by context and human engagement with their context to approach policymaking. challenges to inclusion of local knowledge some challenges to the inclusion of local knowledge, however, are thatlocal knowledge is not easily generalisable as it is usually grounded in the context, while public policy would aim to address the needs of the general populace. local knowledge is also tacit knowledge, and this attribute has been cited as a reason for marginalising local knowledge. this speaks to the value placement on other ways of knowing within policy formation. the importance attached to ie, its guiding policies and the right of every child to education have grown, and most countries have adopted and created laws and policies to this effect (unicef 2012). however, the quality and applicability of these policies differ from between countries (hayes & bulat 2017), as every country will approach inclusive educational reforms as influenced by their current educational systems, needs and cultural contexts. this is because the meaning of ie within each country is subject to the priorities set by local policy actors, which are evidenced within the policy directives (magnússon et al. 2019). participants in this study express inadequate inclusion of local knowledge as an indication that it is not a government priority. evidence from the literature, however, agree with participants’ assertion that the inclusion of local, contextual knowledge will fill a gap. hayes and bulat (2017) stated that the ratification or localisation of international policies supports successful implementation. however, the way localisation, inclusion, and/or influence of local or social knowledge within policymaking (ciyer 2010; holmes & crossley 2004; nugroho et al. 2018; rata 2014) occurs is influenced by the country’s history and context (ciyer 2010). this reflects the ways that international and local knowledge patterns respond to global trends and discourses (openshaw 2009). this influence of history and context is evident in south africa, where participants often referred to their racialised history and its current impact on the inclusion of diverse knowledge within their ie policy. this remains a challenge within the policy landscape. relevance of including local knowledge within policies despite the above challenges, all participants in this study recognised the relevance of including local knowledge within policymaking. the importance and argument for including local knowledge within policymaking has been demonstrated in certain practices within policymaking (fischer 2002; magnússon et al. 2019; smalley 2020), demonstrating the legitimacy of local knowledge to strengthen and influence policy. unesco (2020) posited that inclusion cannot be enforced but should be informed by meaningful collaboration between the government and the communities they serve. participants felt that this sense of authentic collaboration is still missing, as pwds and their communities are still under-represented within ie policymaking. the inclusion of local knowledge into policies contribute to globally aware but locally relevant education policies (boossabong 2017; nugroho et al. 2018). if we aim to achieve long-term, sustainable goals, there is a need to ensure that local knowledge and cultural values inform policy development in africa. this alludes to whose knowledge and values are being prioritised within educational policies in africa? what does this mean for ie and pwd in africa? although international instruments related to the field of education (unesco 2020; united nations 2006) advocate that the understanding and implementation of educational policies should be influenced and grounded in the political, social and cultural philosophies of the local context, the reverse has often been the case with many countries in the global south, whose policies are still being guided mainly by outsider influences (holmes & crossley 2004). africa has an ecology of knowledge that can influence policy development within the continent. thus, an integration of knowledge is required for development, and ‘traditional wisdom should also be considered as a valuable part of the knowledge system’ (cetto et al. 1996:27). it becomes relevant that the ‘knowledge system’ in the context within which the ie policy is developed should influence what is foregrounded within the policy document and what is excluded (magnússon et al. 2019). policy, therefore, is ‘in the state of becoming, continually contested and interpreted by those initiating it, by those supposed to implement it and by external actors’ (magnússon 2015, cited in magnússon et al. 2019:68). policy documents are influenced by ideologies, and policies influence practice (taylor 1997). inclusive education is not different. the understanding provided to the term ‘inclusion’ should be informed by the prevailing contextual influences and contestations. it is interesting to note that in the current year (2021), all the three national policies within the three countries of this study were due for an evaluation, so the focus elicited critical issues about what participants would like to see revisited in the new policy, inclusion of local knowledge is one of those areas. i present that the inclusion of local knowledge within national education policies will support a more contextually relevant reality for inclusion of pwds in the area of education, health and well-being in their local context. strengths and limitations this study catered to certain strengths and demonstrated some limitations. firstly, the study is located and contextualised within three countries located within three different regions of africa. this context is a strength of the study, as it provided some triangulation in terms of data analysis and methodological rigor. secondly, data was collected via desktop review of national ie policy and government statements. although not fully reported in this article, (it is being written up in a different article) the outcomes of the desktop study further corroborated the responses of the study participants. thirdly, key participants with longstanding experience and engagement in the field of ie within their countries, were interviewed in south africa, ghana, and uganda. some study participants were involved in the crafting of the current national ie policy in their countries and were able to provide very relevant insight into the status of the national ie policy within their contexts. one of the key limitations of this study is that three main categories of participants could not be accessed in one or more of the study contexts. traditional rulers could not be accessed in any of the three countries because of the online mode of data collection because of covid-19 restrictions. the african network for evidence-to-action on disability coordinators could not physically go to these community and traditional rulers on my behalf, and therefore, this important voice is missing in the study. as a result of various levels of gatekeeping challenges, i could not access teachers to interview in all the countries; however, i could only access teachers in ghana. the south african education department granted permission to access teachers; however, the school principals i contacted declined and some schools did not respond to me. in uganda, i was unable to secure permission, so i could not interview teachers. the final important voice that is missing is only in one country south africa which is the voice of policymakers. i was able to access policymakers in ghana and uganda; however, in south africa, this was challenging. after approximately 4 weeks of emails and follow-up with two identified policymakers, i had to give up and conclude the study. implications and recommendations participants of this study have reiterated the importance of including local knowledge within ie policy to inform local realities. the three contexts of this study have formed very good written ie policies through wide consultations with partners and collaborators at different levels. however, participants insist that these policies have not yet fully met the goal of inclusion for all, as more knowledge on ground is needed to inform policy formation and fill the gap experienced in policy implementation related to the education of children with disabilities. this insufficient inclusion of local knowledge also speaks to the way the policy document is popularised, and the spaces of popularisation. governments should ensure that popularisation plans and strategies are not simply an ‘information’ session, but a sharing session, a conversation, a collaboration and opportunity to learn from their local communities and inform local communities about the intention of the governments regarding the ie policies. as stated earlier, this year, all three countries are scheduled for a policy overhaul, and therefore, these recommendations from this study are timeous and will hopefully inform these processes. policymakers need to engage more with local communities during the policy formation, and not only when it is time to implement policies. an authentic, meaningful engagement should be undertaken with communities to inform ie policy, not just as an additional checklist. conclusion persons with disabilities and their educators do not exist in isolation but emanate from communities with existing value systems that have an impact on their lived experiences and access to sustainable educational outcomes. the ie policy document can facilitate access and address the implementation gap that is often experienced by policy implementers through the inclusion of relevant local knowledge within the policy document. participants of this study across south africa, ghana and uganda reiterate the relevance of local knowledge for informing sustainable policy outcomes that cater to local realities. rather than imposing western-imported ideals of education, governments must ensure that these local realities inform educational outcomes within the african context, thus contributing to continuity of learning for children with disabilities and policy implementation within african communities. acknowledgements the author acknowledges the support of african network for evidence-to-action on disability (afrinead) country coordinators in south africa, ghana and uganda. competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. author’s contributions c.o.o. is the sole author of this article. ethical considerations ethical clearance to conduct this study was obtained from the health research ethics committee (ref. no.: x20/06/024). funding information the author would like to acknowledge the funding support from harry crossley. data availability the data from the study are available from the author upon reasonable request. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy 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https://sites.unicef.org/disabilities/files/unicef_right_to_education_children_disabilities_en_web.pdf. united nations, 2006, convention on the rights of persons with disabilities and optional protocol, new york, viewed n.d., from https://www.un.org/development/desa/disabilities/convention-on-the-rights-ofpersons-with-disabilities/optional-protocol-to-the-convention-on-the-rights-ofpersons-with-disabilities.html. united nations, 2011, world report on disability, who press, geneva. abstract introduction family-centred care workshop process workshop outcomes recommendations conclusion acknowledgements references about the author(s) pauline samia department of paediatrics and child health, aga khan university, nairobi, kenya brain and mind institute, aga khan university, nairobi, kenya susan wamithi department of paediatrics and child health, aga khan university, nairobi, kenya amina kassam department of paediatrics and child health, aga khan university, nairobi, kenya melissa tirkha department of paediatrics and child health, aga khan university, nairobi, kenya edward kija department of paediatrics, muhimbili university of health and allied sciences, dar es salaam, united republic of tanzania ayalew moges department of paediatrics, debre tabor hospital, debre tabor, ethiopia arnab seal department of paediatrics, leeds community healthcare nhs trust, leeds, united kingdom department of health research methods, evidence and impact, university of leeds, leeds, united kingdom peter rosenbaum department of paediatrics, mcmaster university, hamilton, canada robert armstrong department of paediatrics and child health, aga khan university, nairobi, kenya citation samia, p., wamithi, s., kassam, a., tirkha, m., kija, e., moges, a., et al. 2022, ‘child disability and family-centred care in east africa: perspectives from a workshop with stakeholders and health practitioners’, african journal of disability 11(0), a931. https://doi.org/10.4102/ajod.v11i0.931 conference report child disability and family-centred care in east africa: perspectives from a workshop with stakeholders and health practitioners pauline samia, susan wamithi, amina kassam, melissa tirkha, edward kija, ayalew moges, arnab seal, peter rosenbaum, robert armstrong received: 31 aug. 2021; accepted: 10 apr. 2022; published: 29 july 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: our understanding of child disability has undergone major changes over the last three decades transforming our approach to assessment and management. globally there are significant gaps in the application of these 21st century models of care. there is recognition that economic, cultural, and social factors influence transitions in care and there is need to consider contextual factors. objectives: a two-day workshop brought together key stakeholders to discuss current models of care and their application in the east african context. this article summarises workshop proceedings and identifies a broadly supported set of recommendations that serve to set a direction for health professionals, families, family-based disability organisations, communities and government. method: presentations followed by facilitated round-table sessions explored specific themes with participants reporting their responses communally. future actions were agreed upon by relevant stakeholders. results: many barriers exist to care for children with disabilities in east africa, including stigma and a lack of human and infrastructural resources. in addition, significant disparities exist with regard to access to medication and specialist care. the international classification of functioning framework needs to be translated to clinical practice within east africa, with due recognition of the importance of family-centred care and emphasis on the life course theory for disability care. family-centred care, educational initiatives, advocacy on the part of stakeholders and involvement of government policymakers are important avenues to improve outcomes. conclusion: further education and data are needed to inform family-centred care and multidisciplinary team implementation across east african care contexts for children with disabilities. keywords: cerebral palsy; rehabilitation; quality of life; africa; family-centred. introduction the world health organization (who) defines disability as an umbrella term that covers impairments, activity limitations and restrictions in participation (world health organization/the world bank 2011). disability is not considered a health problem, but rather an interaction between a person’s bodily functions and features of the environments in which they live (groce 2018; world health organization/the world bank 2011). the united nations children’s fund provides a global estimate of 230 million children, aged 0–17 years, having a disability, with 28.9 million children living in eastern and southern africa (unicef 2021). more than 50% of children with disabilities live in rural settings and only 39% of this population attend a primary school (world health organization/the world bank 2011). advances in the field of child development and disability create opportunities to impact the life course of children with disabilities, whether the child is living in high or low resource settings. the transition from a traditional treatment model approach to disability to a socio-cultural ability model has transformed the way professionals understand their role in relation to the family and broader societal influences. this transformation is aligned with professionals bringing a higher level of evidence-informed science to the therapeutic interventions that a child with a disability may benefit from at any given stage of their development. over the last three decades, two key conceptual shifts have occurred that create the opportunity to have greater impact on the lives of children with a disability. the first one is the fundamental role of the family, not the health professional, in understanding and supporting the development of their child. family-centred care means that providing effective care for a child includes attention to the immediate social structure within which the child lives and facilitating operations within that context. the child therefore is not managed singly and the unit of care is the family. historically the ‘answer’ was seen to be with the professional and hence families were dependent on the guidance of the professional. the growth of family-centred care has occurred through recognition that the family best understands their child and has the greatest investment of time and commitment for their child’s development and that they are key equal partners to the health professionals in understanding the needs of their child and the therapeutic interventions that can have an impact (makworo, bwibo & omoni 2016). equally important is the recognition that the family themselves are the greatest possible therapeutic intervention and that supporting and empowering families has enormous opportunity to impact their child’s development. the second important conceptual shift came with the introduction and evolution of the international classification of function (icf) by the world health organization in 2001 that shifted language from ‘impairment’, ‘disability’ and ‘handicap’ to neutral terms of ‘body function and structure’, ‘activity’ and ‘participation’ and emphasising an interaction amongst these components that defines the health and well-being of the individual. disability becomes a generic term that captures the individual in the context of their environment. the icf is intended to be a framework for classification, but the more powerful impact has been the conceptual shift in how we understand disability and the opportunities for supporting healthy development in children who have a disability. for children, this model has become a highly effective education tool with the development of the ‘f-words’ by the canchild centre for childhood disability research (rosenbaum & gorter 2012). the ‘f-words’ of ‘fitness’, ‘function’, ‘friendship’, ‘family factors’, ‘future’, ‘fun’ align with and operationalise the icf framework, helping families to understand the important role they play whilst enabling clinical providers to individualise interventions for each child based on their abilities (rosenbaum & gorter 2012). this model is illustrated in figure 1. figure 1: the international classification of function framework linked to the f-words. these conceptual shifts have changed how professional services are organised and delivered, reinforcing the central role of family and emphasis on participation (agarwal, scher & tilton 2021; kim et al. 2021, rao 2021). this has also aligned with the more vigorous effort to advance evidence-informed therapeutics, leading to the development of standardised guidelines, care pathways and better measures of benefit. over time there has been recognition of increasing disparity in uptake at a global level, particularly limited application and adaptation in low-resource settings. children and their families in these countries are not only at greatest risk but also have the greatest opportunity for impact in adoption of new approaches. three professional organisations (american academy of cerebral palsy and developmental medicine, european academy of child disability and the australasia academy of child disability) came together to create a global organisation (international alliance of academies of child disability [iaacd]) that is committed to advance the development of country or regional academies that can better support and build local contextually relevant programmes and services whilst drawing from and contributing to global knowledge developments in the field (forssberg, damiano & armstrong 2022). in 2014, the eastern africa academy of child disability (eaacd) was established and has become a member of the iaacd. the eaacd has held annual professional meetings in nairobi, mombasa, dar es salaam, kampala and addis ababa. in january 2020, eaacd and iaacd co-hosted a family-centred care workshop in nairobi with the goal of discussing the 21st-century vision for children with disabilities growing up in east africa with a specific focus on kenya. the content and outcome of this workshop are the subject of this report. family-centred care workshop process the workshop was structured around three thematic areas: (1) advances in understanding of child disability, (2) implementing family-centred care in low-resource settings and (3) planning care across the life course. the workshop used the ‘icf-f words’ model with kiswahili translation (figure 2) in the form of a large poster placed in the meeting room to allow participants visualise and understand the f-words. this is the first kiswahili translation of these terms and was made to contextualise the terms for easier assimilation into practice. during a session on the icf framework and the f-words under the theme ‘implementing family-centred care in low-resource settings’, the speaker referred to the poster to reinforce the message for the participants. the workshop promoted exploration of local perspectives on disability-related health care practices in east africa with the goal to make recommendations moving forward on (1) the development of global standards of practice, (2) strategies for dissemination and uptake of evidence-informed protocols and care pathways to guide health care worker practice and (3) strategies to foster more effective networking amongst organisations and promote multidisciplinary practice. figure 2: kiswahili translation of the f-words integrated into the international classification of function framework. invitations to the workshop were sent to health professionals, parents of children living with disabilities, parent-run disability organisations and government officials within kenya, as well as to eaacd members in other eastern african countries. participants from iaacd included peter rosenbaum, professor of paediatrics at mcmaster university, an international authority in the field of child disability and the co-creator of the ‘f-words’, and arnab seal, honorary senior lecturer at the university of leeds and chair of the education and training committee of iaacd. over 2 days, 64 participants attended the workshop. table 1 shows the distribution of participants at the workshop. table 1: distribution of workshop participants by cadre. the 2-day workshop comprised six sessions, each of which focussed on a unique sub-theme. during each session, four or five multidisciplinary speakers were invited to present on different aspects of the sub-theme. following these presentations, participants were provided with an opportunity to discuss the sub-theme and presentations in eight round tables groups each comprising eight members and report back on their deliberations to the main group through a rapporteur. workshop outcomes advances in understanding of child disability there was broad consensus for the value of a 21st-century vision of child disability that was ability and participation focused, although recognition that the concepts articulated still have not yet been fully accepted or integrated into professional practices or into community and government strategies for advancing the cultural and social understanding of disability. the current vision on child disability encourages governments, organisations and communities to put in place policies and/or processes that facilitate the possibility for young children with disability to have greater participation in society. this approach leads to better inclusivity and advocacy for children with disability and reduces barriers that negate provision for their rights and needs (leite, chagas & rosenbaum 2021). the role of parents and parent advocacy organisations in influencing community and government change was emphasised and working together with health professionals in approaching community or government would be important to advocate for this focus in practice. in the local setting, parent organisations, professional bodies and government agencies were observed to function ‘in silos’, leading to ineffective implementation of policies with potential exclusion of those in greatest need. educating parents, communities and policymakers on the need to have an ability and participatory approach to child disability was advanced as a way to overcome the existing scenario. the ‘f-words’ either in english or as translated into kiswahili were seen as a valuable communication tool, because they would enhance the understanding of a holistic, life course approach to management of disability and inform implementation of habilitation and re-habilitation-based interventions, education and practice (leite et al. 2021). family-centred care practitioners cautioned that the term ‘disability’ as understood in east africa is problematic because mainly severe forms receive attention. participants remarked that the medical model remains a dominant force and drives understanding of good health care for children, placing the family in the background and localising the problem to the individual. the role of the family in care is complex but necessary and transition to a true partnership relationship takes time. rosenbaum and colleagues embedded the ‘f-words’, including family factors into the icf framework (rosenbaum & gorter 2012) and this has achieved widespread endorsement with translation into 19 different languages. clinicians remarked that they incorporated components of the f-words framework into practice to varying degrees, highlighting not only the beneficial impact but also challenges because of family reluctance. for example, families would often not allow their child to participate in activities for fear of injury. this requires an active and sensitive negotiation process with the family as the care plan is developed. stigma continues to be of concern. parents and clinicians observed that whilst it is feasible for children with disabilities to have social relationships amongst themselves, it is much harder for them to form relationships with children without disabilities. this compromises the opportunities for participation and may be a common reason for exclusion of children with disabilities from being enrolled in school or fully participating even after enrolment. a general consensus was that optimal child functioning occurs within a supportive community as described by ohene, power and raghu (2020). participants remarked that the family input into care was critical; however, the family centered care (fcc) model, which considers family as partners in decision-making, is not encouraged in care locally (makworo et al. 2016). as a result of a lack of knowledge, data and structural support, participants remarked that it is challenging to incorporate fcc into practice. a system to support fcc collaboration is lacking between policymakers and health professionals and training for healthcare specialists is limited (makworo et al. 2016). other factors encumber fcc implementation including parental commitments – work, caring for others and travelling distance. participants also highlighted unaddressed mental health problems amongst parents as barriers. additional difficulties include a need for increased resources, including time required to engage parents because of disconnect in a region where appropriately trained health care workers are limited (bunning et al. 2020). structural limitations were also identified, including space, staffing, time restrictions and not having access to multidisciplinary teams. also, the culture of hospital care was cited because parents are acculturated to believe that care is strictly administered by physicians through hospitals (makworo et al. 2016). the benefits to fcc include a platform for supporting families as they work through emotions such as shame, guilt and anxiety (ohene et al. 2020). the fcc enables families to negotiate within the system, report incidents, provide feedback and create trust between families and care providers (ohene et al. 2020). in the end, advancing family-centred care provides the child who has a disability with the best opportunity for health development. planning care across the life course there was general agreement that the lack of countryor community-level data on disability and disability services continues to compromise a 21st-century focus on children with disabilities. policy documents are fine but without data gathered through health, education and social service systems there is no ability to measure progress, identify areas of need and define inequities in access. this lack of appropriate data was acknowledged by kenyan government officials attending the workshop and agreed that this should be an area of development. all children go through transitions and these periods are of special importance to children with disabilities because the access to and nature of services are often tied to specific periods of a child’s life. this is particularly true when children with disabilities turn 18 years of age and transition out of school. services that were available often end and an increased burden is placed on their families. in the current system, participants remarked that practitioners can improve the quality of transitions through early planning with family using resources available. for example, children known to require assistive devices for mobility would be able to participate much better with early access to wheelchairs. youth clinics or joint transition clinics were also proposed to affect a smooth transition to adult services. such clinics are currently not available in east africa. recommendations the following recommendations came from a very lively workshop that drew on multiple perspectives in the context of the communities in east africa: there are significant challenges to implementing culturally sensitive family-centred care in the current context, but individual institutions can use the ‘icf-f-words’ framework for moving towards fcc and serving as ‘lead’ agencies where implementation is possible. this might include strengthening existing measures and systems through provision of support such as social workers, facilitation of family participation during care by clinicians and family education beyond treatment. institutions need to review the capacity and structure of multidisciplinary teams in providing care, exploring strategies for more effective communication, co-location of key disciplines, allowing professionals greater ease of interaction amongst themselves and with families with respect to individual children. practitioners suggested refinement to an existing system where a family has one booklet where practitioners can add their input, so all care workers and families are aware of the different treatment plans provided. this would help foster continuity of care in lieu of a unified electronic system. professionals need to more frequently utilise evidence-informed guidelines for assessment and treatment, adjusted as necessary to the context of their community of practice. preand post-employment education reforms need to be explored to ensure professionals are current in their knowledge, practices and attitudes. government engagement is critical to advancing services for children with disabilities. professionals need to work with families and family-based organisations to develop a coordinated advocacy strategy to promote government action that is aligned to a national policy framework. policy makers need to pay attention to development of community and national level data on disability prevalence and the services and programmes available across the life span prioritised. conclusion the 21st-century understanding of disability creates an expectation to support the development of children with disabilities that is focused on ‘ability’ and participation with assessment, therapeutics and programmes or services that are evidence-informed and advanced in partnership with families. this vision can be achieved in low-resource settings where there is institutional leadership that models best practice and works effectively to influence community and government policy and practices. acknowledgements the authors would like to thank the following practitioners in the organisation for their input and support in conducting the workshop without whom this work would not have been possible: amina abubakar, alex bosire, alliya mohamed, elizabeth khaemba, grace m. thiong’o, mohamed shamshudin and sue murr. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions p.s., s.w., a.k., m.t., e.k., a.m., a.s., p. r. and r.a. all contributed to the conceptualisation, write-up and review of the manuscript. a.k. and m.t. in addition contributed to the initial evaluation of findings. p.s. and r.a. contributed to acquisition of funding to run the workshop and dissemination of findings. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. workshop and dissemination facilitation is partially provided by aga khan university. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references agarwal, s., scher, m.s. & tilton, a., 2021, ‘cerebral palsy and rehabilitative care: the role of home-based care and family-centered approach’, indian pediatrics 58(9), 813–814. https://doi.org/10.1007/s13312-021-2298-z bunning, k., gona, j.k., newton, c.r., andrews, f., blazey, c., ruddock, h. et al., 2020, ‘empowering self-help groups for caregivers of children with disabilities in kilifi, kenya: impacts and their underlying mechanisms’, plos one 15(3), e0229851. https://doi.org/10.1371/journal.pone.0229851 eastern africa academy of childhood disability (eaacd), welcome to eaacd transforming eastern africa, viewed n.d., from https://www.eaacdafrica.org forssberg, h., damiano, d.l. & armstrong, r., 2022, ‘“better together”: achieving a global professional network for childhood disability’, developmental medicine 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r., 2020, ‘health professionals’ perceptions and practice of family centred care for children injured in road traffic accidents: a qualitative study in ghana’, journal of pediatric nursing 53, e49–e56. https://doi.org/10.1016/j.pedn.2020.02.005 rao, p.t., 2021, ‘a paradigm shift in the delivery of physical therapy services for children with disabilities in the time of the covid-19 pandemic’, physical therapy 101(1), pzaa192. https://doi.org/10.1093/ptj/pzaa192 rosenbaum, p. & gorter, j.w., 2012, ‘the “f-words” in childhood disability: i swear this is how we should think!’, child: care health and development 38(4), 457–463. https://doi.org/10.1111/j.1365-2214.2011.01338.x united nations children’s fund (unicef), 2021, seen, counted, included: using data to shed light on the well-being of children with disabilities, unicef, viewed 09 april 2022, from https://data.unicef.org/resources/children-with-disabilities-report-2021/. world health organization, 2001, international classification of functioning, disability and health (icf), viewed n.d., from https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health world health organization (who), the world bank, 2011, world report on disability, world health organization, geneva. article information author: heather m. aldersey1 affiliation: 1university of kansas beach center on disability, university of kansas, lawrence, usa correspondence to: heather aldersey postal address: 1200 sunnyside drive, university of kansas, lawrence, ks, 66044, usa, 785-393-8595 dates: received: 01 may 2012 accepted: 15 july 2012 published: 04 oct. 2012 how to cite this article: aldersey, h.m., 2012, ‘family perceptions of intellectual disability: understanding and support in dar es salaam’, african journal of disability 1(1), art. #32, 12 pages. http://dx.doi.org/10.4102/ ajod.v1i1.32 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. family perceptions of intellectual disability: understanding and support in dar es salaam in this original research... open access • abstract • introduction    • statement of the problem    • family perceptions of and experiences with caregiving       • dar es salaam, tanzania       • contribution to the field    • literature review • methods    • material and setting    • data collection    • data analysis • results    • the search for meaning       • something is wrong… (problems in diagnosis)       • seeking a cure       • acceptance       • stigma       • life after us       • employment       • marriage       • whose responsibility?       • family       • the tanzanian and international community       • government • ethical considerations • discussion    • coping, spiritual wellbeing, and commitment       • implications for future interventions • conclusions, limitations, and suggestions for future research • acknowledgements    • competing interests    • author contributions • references abstract top ↑ when attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. this article outlines and discusses interviews that were conducted in dar es salaam, tanzania, with family members of children and adults with intellectual disabilities. these interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in dar es salaam. understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability. introduction top ↑ in most nations worldwide, the family is the first and most enduring unit of society and is usually the primary source of influence behind the formation of personality and the growth of an individual (macionis 2011). for the lives of people with intellectual disabilities, family members often continue to provide invaluable support throughout their lifespan (chou, lin, chang, and schalock 2007; hill and rose 2009; mcconkey 2005). when attempting to understand the construct of intellectual disability in various different contexts, speaking to family members, in addition to the individual with a disability, may provide different insight about understandings of and responses to intellectual disability in society. it may help to identify the supports that are available or needed to ensure the quality of life of the family member with a disability. statement of the problem in this study, my research questions were (a) how do families conceptualise and experience disability?; (b) what are families greatest support needs?; and (c) what are the unique strengths of each family? i aimed to expand upon mbwilo et al.’s (2010) important exploration of family and intellectual disability in dar es salaam by further probing family understanding of intellectual disability and identifying areas of family support needs while also providing a discussion of family strengths. after identification of family strengths, one can attempt to build upon those strengths to improve overall family quality of life. in this article, i discuss the results of interviews conducted with family members of children and adults with intellectual disabilities in dar es salaam, tanzania. these interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family needs, hopes, and dreams for the future. the data gathered through the interviews were a part of a wider exploratory study that gathered insight from individuals with disabilities (including intellectual, physical, and sensory disabilities), families, and other providers of support to explore understandings and perceptions of disability in dar es salaam. understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and support needs which can ultimately improve family quality of life and the quality of life of the member with a disability. family is an important aspect in the lives of people with disabilities because the perceptions of disability, as well as the roles assigned to individuals with a disability, are greatly informed by the family structure and the person’s place within the family (rao 2006). family comes to play an even more important role in countries without extensive professional services. turnbull and turnbull (2001) assert that when individuals with an intellectual disability are unable to make the decisions in their lives without assistance, that assistance should come from trusted allies – those people who are deeply committed and have genuine emotional relationships with the person. for this study, i defined a family member to be any person who is affiliated with the person with a disability by consanguinity, affinity, or coresidence. disability is a cultural creation: disability status depends less on the nature or degree of a person’s impairment and more on societal standards for normative bodies, minds, behaviours, and roles (armstrong and fitzgerald 1996; ingstad & whyte 1995). although the definition of intellectual disability in a specific tanzanian cultural context requires further research and investigation, for the purposes of this exploratory study, i used a commonly-accepted definition of intellectual disability: someone whose intellectual function and adaptive behaviour (everyday social and practical skills) differ significantly from what is normative in his or her society (aaidd 2011). finally, this study attempted to identify family strengths as well as needs. although researchers have begun to study family needs in tanzania (mbwilo, smide & aarts 2010), there has not yet been an extensive exploration of family strengths. even though there are limited data on family strengths in a tanzania-specific context, researchers such as those who developed the family strengths model (stinnett & defrain 1985) have identified family strengths which have proven to be more or less universally applicable worldwide. in this article, i define family strengths as ‘the set of relationships and processes that support and protect families and family members, especially during times of adversity and change [and that] help to maintain family cohesion while also supporting the development and well-being of individual family members’ (moore, chalk, scarpa, & vandivere 2002, p. 1). internationally-relevant examples of family strengths include commitment, appreciation and affection, positive communication, time together, spiritual wellbeing, and the ability to cope with stress and crisis (defrain 1999). support can often be provided to families in order to build or enhance their strengths. in the context of this study, support is ‘resources and strategies that aim to promote the development, education, interests, and personal well-being of a person’ (luckasson 1992:151). family support encompasses the individualised determination of each family's needs, strengths, and preferences as the basis for accessing resources (i.e., emotional, informational, financial, and instrumental) to enhance family quality of life. family perceptions of and experiences with caregiving although the key focus of this study was to identify family strengths and support in tanzania, the literature on family perceptions of and experiences with caregiving of family members with intellectual disabilities globally also adds useful context to a discussion of family responses to disability, family strengths, and family support needs. it should be noted that most of the literature on caregiving comes from minority (western) world contexts and may not be completely relevant to a tanzanian situation. in spite of this fact, this literature can still provide background into the caregiving experience in general to which one may begin to determine the ways in which the tanzanian experience is similar or different. until recently, research on caregiving of children and adults with intellectual disabilities tended to highlight the ‘burden’ of caregiving for parents (hassall, rose, & mcdonald 2005; kenny & mcgilloway 2007; salovita, italinna, & leinonen 2003). researchers have identified family conflict, exhaustion, guilt, financial strain, and constricted social lives as negative outcomes of caregiving (pearlin, mullin, semple, & skaff 1990; gona, mung’ala-odera, newton, & hartley 2010) and have identified support, respite care, and future planning as key areas of family concern (dillenburger &mckerr 2010). numerous studies have chronicled the stress and burnout associated with caring for a person with intellectual disability, with carers often presenting lower morale and greater levels of depression than the general population (blacher, neece, & paczkowski 2005; blacher & mcintyre 2006). in spite of the increased levels of stress shown in parents of children with these disabilities, many parents and families of such children are well-adapted and appear resilient in the face of challenges (gerstein et al. 2009) in recent years, researchers have shown that, in addition to the challenges, there can be many positive and rewarding aspects of providing care for family members with intellectual disabilities, such as an increased sense of psychological wellbeing (hong & seltzer 1995). moreover, when trying to understand the circumstances or meaning behind having a child with a disability, researchers report that many parents take comfort in their spirituality, which helps them view their child as a blessing or a test of their faith, rather than as a burden (blacher, neece, & paczkowski 2005). many discussions of caring for people with intellectual disabilities combine ideas of both the ‘burden’ or stress entailed as well as its positive aspects. for example, although kelly and mcgilloway (2007) found evidence of caregiver strain, they also found that most participants were satisfied with their lives, used positive coping strategies, and had realistic expectations for their children and their future. in addition to studying the effects on families (both positive and negative) of caring for a disabled family member, research has also explored certain family traits that may affect the outcome of a their experiences. for example, in a study of hope as a psychological resilience factor in parents of children with disabilities, lloyd & hastings (2009) found that hope predicted increased positive wellbeing of families and decreased their psychological distress. having outlined the nature of this study and discussed caregiving in general, i will now turn to a discussion of disability in tanzania. dar es salaam, tanzania a 2009 tanzania national bureau of statistics survey showed that, in 2008, approximately 2.4 million people (or 8% of the population) experienced some type of limitation of activity and that rates of school enrolment among children with disabilities were much lower than the national school enrolment for all children. in addition to national statistics on the situation of people with disabilities, non-governmental organisations have also begun to gather data on the experiences of people with disabilities in tanzania. for example, a 2010 assessment of the proportion of persons with disabilities in the workplace in dar es salaam, conducted by comprehensive community based rehabilitation in tanzania (ccbrt), radar development, and disability aid abroad found that of the 126 companies surveyed (with a total of 25 446 employees), only 186 or 0.7% of employees were persons with disabilities (kweka 2010). this percentage clearly falls far short of adequately representing the percentage of the tanzanian population living with disabilities. in spite of the somewhat depressing statistics about the inclusion of people with disabilities in such community areas as schools and the workplace, tanzania has an impressive history of including people with disabilities in national policy documents. indeed, the government of tanzania has affirmed the rights of people with disabilities since it passed the disabled persons employment act in 1982. disability groups under the umbrella of shivyawata, the disabled persons’ organizations federation, have often served as a positive catalyst and key advocates and advisors in the tanzanian disability policy process. although the tanzanian government stands out as an example in africa for public commitment to people with disabilities via policy, much of the tanzanian policy concerning rights and services for people with disabilities, such as the 2004 national policy on disability, have been problematic because it has typically lacked specific accountability measures that would ensure that national promises are actually carried out in practice (aldersey & turnbull 2011). recently, tanzania has taken a great step in the direction of increased accountability measures with the passing of the disability act of 2010 (united republic of tanzania 2010). as it relates to family, this act does not explicitly highlight the importance of providing support for the family. explicit references to family made in this act are in article 16 and 17, which affirm the collective obligation of relatives to provide social support to their family members with disabilities and enables a person with a disability to utilise legal mechanisms to require monthly financial payments from relatives to the individual with a disability if they do not provide support voluntarily. although provisions to support the entire family are absent in this act, the act does make provisions for healthcare, social support, accessibility, rehabilitation, education and vocational training, communication, employment or work protection, and promotion of basic rights for individuals with disabilities. these provisions are supplemented with such accountability measures that a 3% quota of persons with disabilities be employed in companies of 20 employees or more, the allotment of budget to a national fund for disabilities, and the creation of a national disability advisory council. the new disability act of 2010 holds great promise for improving the inclusion and quality of life of people with disabilities in tanzania, if it is implemented as promised. contribution to the field when attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with intellectual disabilities. this article reflects the shift from a deficit-based understanding of disability to a more positive, solutions-focused and strength-based understanding of disability. literature review the specific literature on family and intellectual disability in tanzania is nearly non-existent, and is sparse on the continent in general (njenga 2009). according to kisanji (1995), who studied tanzanian proverbs and what they reveal about society’s understanding of disability, although proverbs occasionally demonstrate negative attitudes towards people with disabilities, in general they demonstrate that society is tolerant, respectful, and in favour of care and assistance for such individuals. a recent study examining family perceptions of caring for children and adolescents with intellectual disabilities identified that areas of support required for families in dar es salaam were not only basic needs (e.g. daily activities and caregiving in the home such as feeding and toileting), but also education, healthcare, security, and economics (mbwilo, smide, & aarts 2010). this study by mbwilo et al. concludes by identifying issues that could primarily be defined as deficits: deficits in family knowledge, deficits in economic capacity, and deficits of community or home-based health care programmes. although identifying challenges, needs, and areas for improvement is important, researchers should also attempt to identify family strengths when conducting research on family responses to intellectual disability. as summers, behr, and turnbull (1989) argue, families who successfully meet the challenge of a child with a disability have much to teach others about what works and about society’s own attitudes toward people with disabilities; and by focusing on a family’s distress, we provide less opportunity to build on family strengths as an intervention strategy. methods top ↑ material and setting although my sample size of interview respondents was 13, it is also important to note that, similar to many activities occurring in a family home, during the interviews there were many other individuals (e.g., individuals with disabilities, aunts, adult siblings, grandparents, spouses, neighbours, and cousins) coming and going from the room, listening to the conversation, and occasionally corroborating the responses of the primary respondent (e.g. after a mother states that her daughter would like to be married one day, the daughter agrees that she would indeed like to be married). usually, two or three times in an interview session, these extra family members would also provide their own perspectives on questions after a respondent had the chance to answer (e.g. when a mother responds to a question about the individual with disabilities’ strengths by saying that she loves how well her daughter looks after the neighbours’ children, a grandfather adds that his granddaughter is also very neat and clean). these insights from surrounding family members enriched the data i gathered from my primary respondents and gave me greater insight into family and household dynamics. data collection with the exception of four family units (who preferred that the interviews be conducted elsewhere), i held all interviews in the respondents’ homes. the households represented a wide range of different family structures: single mothers, two-parent households, grandparent-headed households, and households comprising a number of family members (e.g. sisters, brothers, cousins, aunts, uncles) under one roof. i conducted interviews either in english or in kiswahili with the assistance of a translator. i chose the language in which i conducted the interview based upon interviewee’s preferences; approximately half of the participants chose to respond in part or entirely in kiswahili, but the majority of interviewees seemed to understand questions when posed in english and responded in kiswahili even before the question was translated. it is important to note that, due to my initial sampling procedures, which relied on the membership base of tamh, my sample is likely skewed toward (a) persons who are inclined toward self-advocacy and advocacy of the rights of persons with disabilities (in terms of education about rights/empowerment and/or the time and resources available for advocacy efforts and membership in tamh) and in some cases, (b) persons who are educated enough to converse in english (at least to secondary level but often to university level). interviews lasted between 30 minutes and an hour and 30 minutes. interview questions focussed upon general family characteristics and goals for the future; how the family came to understand that their member had an intellectual disability, and what, if any, difficulties they have faced, lessons they have learned, or needs they have that are unmet. these questions are presented in the full interview protocol (box 1). initially, although the interview protocol included specific questions addressing strengths (e.g. ‘what do you think your family does particularly well?’ ‘what could i learn from your family that i could use to help other families in my country?’), families did not explicitly identify their strengths, thus i modified the protocol to reflect what is described above, and decided that i would have to utilise a grounded-theory approach in a discussion of my findings to identify family strengths from general, life-history-type stories. box 1: interview protocol questions. i took detailed notes on a pre-established interview sheet and set aside time after each interview to type up these notes and fill in any further comments or observations about the interview into an electronic file. in my hand-written interview notes, when i took down a direct quote, i noted this with quotation marks. all other notes without direct quotes were close approximations of participant responses. in addition to participant responses to interview questions, i also kept field notes in which i entered detailed descriptions of the interview setting (typically of the home) and of the various family members present during my home visits and any notable family interactions (e.g. a grandfather affectionately pats his granddaughter’s leg as he proudly interjects his opinions about her strengths and accomplishments). data analysis my strategy for data analysis was consistent with warren and karner’s (2010:216) assertion that data analysis should begin during the data collection process: ‘[a] reading or relooking process should occur throughout the data collection process; preliminary analysis and analytic ideas should be noted at all phases’. i conducted the analysis concurrently and recursively within and across observations and interviews, using the constant comparative method (charmaz 2006; patton 2002) to identify themes as they emerged. throughout the data collection process, i engaged in reflection and preliminary analysis of data as i entered data into computer files. i entered any preliminary observations and analytical memos about both interviews and field notes as ‘comments’ inserted into a word document. i triangulated interview responses with observations and field notes and consciously searched for negative cases, or contradictory observations. upon leaving the field, i read and reread interview and observation notes twice before identifying tentative themes. i then grouped responses together under tentative themes for further analysis and identification of sub-themes. i was primarily interested in family interview question responses; however, i used my observations to supplement the data provided in interview responses. once themes and sub-themes were near finalised, i then coded my interviews and observations using a scheme of numbers and letters to designate the major categories and sub-categories in the data. i coded hard copies of all computer files of data using coloured pens to mark the margins with the appropriate numbers and letters. in between the coding of data and the writing of this paper, i made analytical memos which greatly assisted me in preparing to write a first draft, increasing the fluidity and depth of my writing, and enabling me to see how categories are connected in a larger, overall process (charmaz & mitchell 2001). results top ↑ having outlined my methods for data collection and analysis and potential limitations and areas of researcher bias, i will now turn to a discussion of research findings. these findings will be organised to align with the major themes and sub-categories identified: (a) ‘search for meaning’; (b) ‘life after us’; and (c) ‘whose responsibility?’. see figure 1 for a visual representation of key themes. following the presentation of findings, i will discuss the family strengths that can be drawn from these various themes. figure 1: results: three themes of dar es salaam family experiences with intellectual disabilities. the search for meaning in the early stages of finding that a family member has an intellectual disability, a number of themes arose amongst this study’s participants. with many of the families interviewed, during the early stages of understanding their family member’s disability, there was first a health crisis (e.g., seizures), or the notion that something was ‘different’ with the child. this was generally followed by a search to understand exactly what the health complication or ‘difference’ was. next, some families discussed their own process of searching for a way to reverse or minimise this difference. often, following this search, families were able to accept the person as they are. at the back of this search for meaning, there is often the sense of stigma surrounding the exceptional family member’s difference. something is wrong… (problems in diagnosis) the families identified two different ways in which they came to understand that their child had an intellectual disability. first, a number of families told me that their child had had a normal birth and that they attributed their child’s disability to being an after-effect of some sort of health condition, such as seizures or suffering from cerebral malaria at an early age. some families did not attribute their member’s disability to a particular illness. as one father stated, he went from hospital to hospital but nobody could tell him why his son was nonverbal and exhibiting challenging behaviours at the age of three. it was only after being seen by several doctors that the son was eventually diagnosed with autism. seeking a cure respondents often shared that in the early years, after learning about their child’s exceptionality, they searched for a ‘cure’. whereas one father told me that if parents are educated they will look for scientific and western cures and if they are not educated they will turn to traditional beliefs, witchcraft, and religion to search for a cure, this statement was contradicted by an interaction that i had with a mother who holds a master’s degree. she told me, ‘many parents opt for traditional healers, because it [finding out one has a child with an intellectual disability] is a spiritual and superstitious thing’. when i asked her if she personally went to a spiritual healer with her son, she replied: ‘of course! i am african! everything, you try! you try everything!’ in this sense, i found tanzanian discussions of a search for a cure not dissimilar from practices of medical pluralism found in western families who seek out a second opinion from a different doctor or employ nutrition advice (e.g., gluten-free diet as a cure for autism). acceptance all of the family members seemed to accept that their child had an intellectual disability and had stopped aggressively seeking a ‘cure’ (while still supporting their development through education, necessary healthcare, etc.). as one father stated, ‘it was a shock to my family, before. you are expecting that he will go to university and so you will worry that he will fail in life. but after time, you realise this is not such a big deal. it is normal.’ the theme of acceptance was also apparent when i asked respondents what they would tell parents who had just found out that their child had a disability similar to that of their own family member’s disability. for example, one aunt responded that she would tell the family that ‘it [the disability] is god’s plan, god’s wish,’ thus indicating that it was important to accept the child as they are. a mother in a different family responded, ‘first of all, it is acceptance. acceptance comes with knowledge.’ she went on to express that many of the people who are around at the birth (e.g., doctors, midwives) are not trained in how to counsel families when a child is born with a disability. she suggested that adequate counselling would provide parents with knowledge about the disability, which would then assist in fostering their acceptance of their child and their disability. stigma in addition to the sub-themes of ‘something is wrong’, ‘seeking a cure’, and ‘acceptance’, respondents discussed understanding their family member’s disability in a setting characterised by ‘stigma’. families discussed stigma in a number of ways. first, respondents asserted that tanzanians have a culture that looks negatively on people with disabilities and that characterises people with disabilities as a ‘bad omen’ for the family. on the individual level, parents discussed watching their children interact with others in the community. one father told me ‘people with mental disabilities live a subhuman life. they are not seen in the community’. another father described on a number of occasions that children with intellectual disabilities are targeted and killed by those practicing witchcraft in the community and thus he does not let his son wander on the streets on his own. other parents identified the stigma that was shown through the language used by people in the community, such as the use of the derogatory term talia for a person with an intellectual disability. whereas some families showed anger at community members who called their children names, other families reported that the community has also been a source of support for their members with disabilities: ‘many people in the neighbourhood accept him. they are very supportive. they have called him names and such, but they have been very supportive to him. they talk with him, and they assist him in crossing the street.’ another mother told me, ‘some people are accepting of aziza, and others are not. those who are accepting do not give us anything, but they talk to her; they have relationships with her. those who are not accepting, they do not beat her, but they speak bad words to her.’ stigma was also shown through discussions of abandonment, both of parents who abandoned children because of their disabilities and of fathers who abandoned their wife and family because of the birth of a child with a disability. a large number of families shared anecdotes about other mothers with children with disabilities that they knew who had been abandoned by their husbands because of the child with a disability. although my sample provides an overwhelming contradiction to stories of family (especially father) abandonment due to the stigma of having a child with a disability in dar es salaam, my respondents insisted that this practice was commonplace. in my sample, i only had two families who directly demonstrated instances of abandonment due to disability. in the first instance, the child with an intellectual disability lived with his grandparents who were the primary caregivers because, they said, the mother ‘dumped’ the child with them because of his disability. the father of the child (the grandparents’ son) comes to visit his son nearly every day. another respondent, a single mother, recounted her husband’s abandonment: ‘i was once married. […] i had two daughters when he left us. mary was two years old when she got cerebral malaria. when she got this, my husband got superstitious, and he abandoned me. due to the stigma of disability, my husband abandoned me completely. i have support only from my parents to take care of my children. i have small income-generating activities (selling clothes, ice-cream, and juice at the marketplace) but even this does not support my family.’ although families told me anecdotes of women left alone and destitute when their husbands abandoned them because of the stigma of having a child with a disability, wealthier families told me of stigma experienced in a different way. some of the wealthier families mentioned that they were accused of witchcraft because of their child’s intellectual disability. specifically, they are accused of sacrificing their child’s intellectual capacity or creating a child with an intellectual disability to gain riches in life. one mother identified a term, dondocha, which she said meant that a child started like any typical child, and then the parents take away the ‘normal’ traits of their child and use the child’s spirit to get rich. ‘often, even if i work hard and earn and have things to show for it, people say “it is because she has that child” and not because i have worked for it.’ life after us when i asked families about their dreams for the future, many family members expressed hope about a high quality life for their member with a disability. some families also expressed unease about the future, especially if they are no longer around to provide care and support for the individual with the disability. in this section i will discuss dreams and worries for the future, including dreams for employment and marriage of the member with a disability. what if we die? many primary caregivers voiced worry about what life will look like for their member with a disability in their absence. as one mother shared, ‘for parents of children with intellectual disabilities, you don’t know the future. my son is 32. he is living with me, and he is not married like his sister. we don’t know how his life will be. we don’t know.’ a small portion of respondents also mentioned worries that extended family and relatives may take advantage of their children with disabilities, especially if parents were planning to leave their children with an inheritance (e.g., putting the house in their name): ‘my son needs food, clothing, shelter. i am running a small restaurant, but what if we die? his future is uncertain without us parents. we don’t know if his relatives will support him in the way that we are doing. he would have the house, but who knows what people would do to him. they might kill him.’ interestingly, none of the persons i interviewed expressed the possibility of siblings as potential future caregivers following the death of the parents; however, had i probed this possibility more explicitly, perhaps parents would have also voiced the option of having siblings take over the caregiving responsibilities. employment one way in which parents saw a bright future for their children with disabilities was through the possibility of their child and family member holding gainful employment. a number of families had members with intellectual disabilities in young adulthood. all of these families disclosed that following completion of school, their member with an intellectual disability now just sits at the family home and does nothing. a number of these families noted that their members’ attitudes and abilities had been negatively affected after having been out of school for a number of months. families argued that in an ideal world, after school, their family members should get employment; however, this was never the reality for the adult individuals with disabilities i met during this study. as the following narratives indicate, when asked about their dreams for their future, a number of different families expressed the goal of employment: ‘my son is nonverbal, so i worry about this. if he could be independent, if he could wake up and go do some work, that would be enough for me.’ * * * ‘i see her able to work in a domestic environment, cleaning, cooking, etc. she helps me wash clothes and iron. she also looks after the other children.’ [note, the daughter of this mother told me that her employment dream was to be a fashion model.] * * * ‘my son, he can do physical work. he is very strong so as long as it is not dangerous (nothing sharp, no electrical wires) like stacking boxes or something, he could work, and the employer might not even know that he has a disability.’ finally, similar to the quotes above, as one father said of his son: ‘we would like for him to be a professional, have his own life, his own family.’ in addition to mentioning the importance of becoming employed, respondents also expressed that marriage of the family member with a disability was a dream for the future. a number of families mentioned marriage both to ensure that family member’s fulfilment of what is considered a ‘normal’ life in society, and, in some instances, to ensure that the member with a disability will have others to care for him or her. marriage at the conclusion of one interview, a family solicited my advice: what did i think about their daughter aziza marrying? they voiced concern that, although they would like aziza to get married, they worry that her husband may mistreat her due to her disability. they worry that they may not be able to protect her from a bad husband. a small number of families of persons with disabilities expressed a similar concern. however, based upon what the family members said in the interview, i had come to learn that, although there was worry about aziza’s wellbeing, marriage was an important dream, both for the family members and for aziza. aziza’s mother and her aunt shared: ‘our dream is that she should be married. so that when we die (the mother and the aunt), aziza will not be alone. she can have children to help her.’ when i followed up with aziza and asked her what she thought about marriage, she (in contrast to her shy and evasive manner toward me in general) happily and enthusiastically told me that she would, one day, like to be married.similarly, one father of a son with disabilities expressed his desire for his son to marry so that he might live a normal and dignified life, typical of any other person in tanzania. ‘i would like for him to get married. he is fond of girls and he understands what marriage is. i would like for him to find a wife so that he can live with respect and dignity.’ marriage seemed like a desired life goal for most families with members at or reaching adulthood. whose responsibility? a final theme that ran through the interviews was that of responsibility. whose responsibility was it to provide support, both to the individual with the disability in specific and to the family in general? in general, respondents seemed to attribute the responsibility for the wellbeing of individuals with disabilities to the entire society as a whole. however, often responses indicated that respondents attributed responsibility to various segments of society, specifically to the family unit, the tanzanian community, the government, and the international community. family it was a general sentiment that family is the most important support in the life of a person with a disability; thus, the family had an important responsibility to provide for their members with disabilities. as one parent noted: ‘parents are very involved in the lives of people with intellectual disability because parents are all these children have. if you are lucky, you also have siblings.’ in terms of assisting primary caregivers to support the individual with the disability, primary caregivers (usually mothers) often identified other family members as important sources of support in their lives. mothers who were still with their husbands (e.g. they were not divorced or widowed) often identified them as huge sources of support in fostering family quality of life. others identified other family members as important supports: ‘my young sister has stayed with my son when i travelled. she has been a big support. my son likes her a lot. he even calls her mama. even the maids have been a big support for me.’ two mothers told me that other families with children with disabilities have come to rely on them, as seasoned parents seen as having valuable experience, for sources of information and support: ‘because people know me, now they are coming to my house to ask for my advice and help with their children’ * * * ‘parents who come for advice are few. many just give up. but those who do come are interested in free medication. education. but most parents just give up. there was a neighbour who was hiding his child in the house. he saw mary and came and asked if she went to school and where. then he started to send his child to school.’ the data indicated that families had a number of responsibilities in terms of support for people with intellectual disabilities. first, parents had a responsibility to care for their child with disabilities. next, the extended family often provided support but with less of the ‘responsibility’ to provide support. finally, seasoned family members were also sometimes responsible for supporting other parents in fulfilling their role in providing for their children with disabilities. in addition to family responsibility to support the quality of life of people with disabilities, some families believed that the wider tanzanian society and even the international community had obligations to provide support. the tanzanian and international community in conversations, families often brought up the various tanzanian organisations which they expected to provide services for them. for example, families identified churches and religious organisations as responsible institutions for welcoming and supporting individuals with disabilities. families also identified national non-governmental organisations (ngos) and civil society organisations (csos) as key providers of economic and social support. one father lamented that, although everyone in tanzanian society has an obligation to support its most vulnerable members, most were not fulfilling this obligation: ‘the world over, civilisation is taking care of disabled people. if people with disabilities are eating from trash like dogs and cats, that’s not civilisation. we must organise our support for people with disabilities in tanzania.… we can learn from other countries and other examples, so that maybe we won’t make the same mistakes that they have.’ the last sentence of this father’s quote hints at the next sub-theme of responsibility: the international community. a number of families identified various forms of support provided by the international community that were important in their lives. these included the free healthcare provided in the comprehensive community based rehabilitation tanzania (ccbrt) disability hospital, and various income-generation and microfinance support programmes from international ngos. families spoke about these supports as if the international community had a responsibility to provide them and the families had a right to access them. for example, when talking about her son’s inclusion, one parent stated: ‘government, ngos, cbos, should make sure that people with disabilities have the opportunity to participate in all aspects of life-daily activities and economics as well. they [people with disabilities] can do it; they just need the opportunity for participation.’ finally, as the above quote indicates, a number of families asserted that the government had a great responsibility for providing for people with disabilities and their families. government in spite of various initiatives that the tanzanian government has implemented in support of people with disabilities, many family respondents felt abandoned by a government that had not fulfilled its responsibility. as one parent said: ‘there is a lack of government support. [tamh exists] because outside organisations are assisting us, but there is no government allotment of funds. we depend on begging for donors. for me, that is key because you can’t have an organisation without [funding].’ another parent argued that the government has an unfulfilled responsibility to provide disability prevention and parent education once an intellectual disability is identified. a great number of arguments were levelled that insisted the government was not fulfilling its civic responsibility: ‘when you listen to some government officials, they speak as if it is the responsibility of ngos and civil society to care for these groups, when this is not the case. it is too big for them. we also need government support.’ ( father of child with id) * * * ‘life in general, here in africa, especially for families … families of people with disabilities in your country, in canada, in america, they typically get support from the government. but here we get no support. here in tanzania, it is your own problem.’ (mother of adult with id) other families felt deceived that the government had promised them various forms of support but that they had so far been unable to access them: ‘my son, he takes medication morning and night for epilepsy. i spend 35 to 40 us dollars a month on his medication. i pay for it all. i have no support from the government. it says in the government policy that they should support us, but up to now, i have not seen any of this support. it says in the policy that they are supposed to do this, but i have not seen them do this.’ * * * ‘the local government, they said they would help, and that was six years ago and they have still not helped us. there has been no support from the government and we go and return and go and return to the municipal government office without any result.’ although a number of parents reported that the government does not provide promised supports (e.g., free health care/medication for individuals with disabilities), conversations with other families and healthcare providers indicated that the government did indeed provide its promised support. as one mother told me, ‘at temeke hospital, they are giving me service freely. the government pays for it.’ as this discrepancy demonstrates, the problem may not be that the government is not providing its promised support; it may be that families just did not know how to access this support. as previously mentioned, because respondents were a part of a self-advocacy organisation, many of them are inclined toward social movements and social action. it is likely that the above-described sense of being let down by the state plays a role in engendering social action. for example, the tanzanian association for the mentally handicapped (tamh) is part of a wider umbrella organisation of various dpos that engages in significant national lobbying and advocacy efforts for the rights of persons with disabilities. moreover, through their active involvement in the tamh, a number of parents interviewed had been directly involved in the consultation process for the creation of the new 2010 disabilities act. ethical considerations top ↑ before entering the field, i obtained ethics approval for this project from the university of kansas’ human subjects committee. one aspect of this approval was the guaranteed confidentiality of my informants, thus every name in this paper has been changed to reflect this commitment to confidentiality. once in the field, i recruited participants through the tamh. participant recruitment included anyone who self-identified as a family member of a person with an intellectual disability. because i relied on self-identification of participants, some participants had children or relatives with a formal diagnosis of an intellectual disability, whereas others had family members who did not hold a formal medical diagnosis of intellectual disability. tamh leadership identified 13 of its members who were willing to take part in home visits and interviews. this identification and selection of members to interview was based upon members who were active in the organisation, willing to welcome a foreign interviewer, and who had ability to provide an interview on short notice. additionally, i selected only those persons who self-identified as the primary caregiver or guardian of the individual with the disability to be the primary interview respondent. for all home visits, a representative of tamh accompanied me and facilitated introductions with the families. this study comprises data obtained from interviews with a total of 12 different family units with 12 individuals with disabilities (8 males, 4 females; ages 4–32). the interviews were arranged with individual caregivers or guardians of the person with the disability; these caregivers were the primary target of and responded to all interview questions. because in one family, a primary-caregiving couple (two individuals) participated in answering all questions together, this study’s sample size is 13 individuals from 12 households: 3 fathers, 8 mothers, and 1 grandparent couple. discussion top ↑ having outlined the key findings of the interview, i will now attempt to understand these responses by applying theories of family strengths to the various themes identified. finally, i will conclude by suggesting ways in which to expand upon these findings in future studies. defrain (1999) classifies family strengths in the following categories: commitment; appreciation and affection; positive communication; time together; spiritual wellbeing; and the ability to cope with stress and crisis. the data demonstrate a variety of such strengths, upon which i will expand. although many respondents demonstrated all of these strengths in subtle ways (i.e. enjoying spending a great deal of time together and verbally and non-verbally expressing appreciation and affection), this discussion will focus on three of the most salient strengths present in interview responses. these strengths include coping, spiritual wellbeing, and commitment. coping, spiritual wellbeing, and commitment a large number of families discussed their thought process in the early years of attempting to understand and negotiate intellectual disability. this process often fell into sub-categories of learning that ‘something is wrong’, seeking a cure for disability, and finally, acceptance. theory suggests that seeking out a causal attribution for situations of stress or for aversive experiences may help individuals to gain or re-establish a sense of control (taylor, lichtman & wood 1984) or a sense of orderliness or predictability within one’s environment (rothbaum, weisz, & snyder 1982). when participants described instances of searching for understanding what was ‘wrong’ for their child and seeking a ‘cure’ from numerous sources, family members were displaying behaviour that is aligned with positive coping and adaptation skills (summers, behr, & turnbull 1989). furthermore, family ability to cope with stress and crisis are shown when families eventually re-establish balance and accept their family member as he or she is, while still promoting that member’s positive development, as shown in the sub-theme of ‘acceptance’. defrain (1999:11) describes the elusive concept of ‘spiritual wellbeing’ as ‘connection to each other and connection to that which is sacred to us in life’. spiritual wellbeing can be manifested in religious terms, harmony, or ethics. perhaps most notably, the strength of spiritual wellbeing was shown when families discussed acceptance of their member with a disability. acceptance was sometimes spoken of in religious terms (e.g., ‘it is god’s will’) but was also spoken of in terms of love and connection to the family member with a disability. one may also identify spiritual wellbeing in those whose responses attributed responsibility of supporting an individual to the society as a whole. this sort of attribution of general societal responsibility to care for those in greatest need demonstrates a strong sense of ethics and of the interconnectedness of the community. the strength of commitment is demonstrated in a variety of ways in interview responses. when families are committed, they do not let outside influences (e.g., work, or other priorities) take away from family interactions. families with the strength of commitment view their life together as a family to be of utmost importance. commitment was most salient in interview responses in the ‘whose responsibility?’ theme. first, respondents viewed themselves as responsible for keeping the family together and for caring for their family member. fathers with whom i spoke provided examples of fathers who certainly had not abandoned their family as a result of having a child with a disability, even though a number of respondents reported that father abandonment is common for children with disabilities in tanzania. next, respondents’ identification of and advocacy for support needs hinted at commitment in a more subtle (but not less important) way. all of the families with whom i spoke were so committed to their family and their member with an intellectual disability that they went out of their way to become advocates for their family’s needs (e.g., first evidenced through their involvement in the parent advocacy organisation, tamh). some of the families had shown their commitment by being involved in and having a voice at national disability policy drafting efforts; one mother demonstrated her commitment by continuously going to the municipal government office in an attempt to gain support for her family member with a disability. thus, i conjecture that the family strength of commitment is not only manifested in vocal assertions of the importance of family but also in the specific actions of self-advocacy that members undertake in order to meet the unique needs of their family. in addition to understanding family strengths, it is also important to note that the issues of stigma, feelings of hopelessness, and lack of formal support that were presented in these interviews could be linked to the literature on caregiving burnout or stress. as mentioned in the introduction to this article, research on parental stress has noted that providing care for a family member with an intellectual disability often requires additional physical, emotional, social and financial resources and that it is necessary to coordinate the family member’s unique needs while balancing competing family needs (murphy, caplin, & young 2006; silver, westbrook, & stein 1998). caregiving, then, has been seen to contribute to parental stress and to lower caregivers’ sense of psychological wellbeing (cramm & nieboer 2011). but, knowledge of the ways in which families experience stress (in this case through stigma, feelings of hopelessness, and lack of support) can inform the utilisation of family strengths to create appropriate support. for example, it has been found that formal and informal support can act as a buffer, with parents reporting lower stress, anxiety and depression when they perceived greater support (blacher, neece, & paczkowski 2005). having discussed some of the potential strengths that may be identified from family discussions of their experiences with intellectual disability, and additional stressors, i will now identify some potential implications of these strengths on future interventions and identify areas for future research. implications for future interventions based upon the above discussion of family strengths, two immediate implications for future practice are apparent. firstly, healthcare providers and other practitioners should support and encourage families as they search for cause of their child’s exceptionality. rather than withhold all but ‘necessary’ knowledge about the nature of the child’s impairment or discourage ‘shopping around’ for solutions, practitioners should support families in their efforts to understand the nature of their child’s impairment. supporting this search for meaning may build upon and advance family strengths in coping with stress and crisis. next, practitioners might try to build upon the strength of commitment shown by many of the strong family advocates in dar es salaam, such as those who participated in this study. family advocates have the potential to serve as important resources for families of children with similar disabilities, such as the two mothers in this study who described already doing this on an informal basis by providing advice on such issues as education and healthcare to other families with children with disabilities in the neighbourhood. in capitalising upon the strength of commitment, seasoned family advocates may be able to provide information to new families to help them identify and access available resources. for example, although some parents were accessing free government healthcare and medication, others had heard of this support but had been unable to figure out how to access it. a more formalised system that facilitated the sharing of expertise of committed family advocates may help to alleviate problems due to lack of information. research has shown that families in africa have an important role to play through advocacy, education on human rights, empowerment, and development of policies about intellectual disability (ngatunga 2004), and i suggest that families who demonstrate this strength of commitment will be able to lead the way. conclusions, limitations, and suggestions for future research top ↑ in this study, i have attempted to probe family understandings of and experiences with intellectual disability in dar es salaam. the most salient themes that arose from this research included searching for meaning, life in the future, and responsibility to provide for people with disabilities. although it is important to identify family concerns, needs, and areas for improvement, it is also important to identify and value family strengths in order to respectfully support families and to identify effective solutions to problems. building upon the qualitative study of family experiences and support needs conducted by mbwilo et al. (2010), this study probed family responses to disability and family needs and applied defrain’s (1999) classification of family strengths to interview responses. across interview responses, i was unable to identify any systematic differences in responses based upon gender (of respondent or individual with a disability) or on socioeconomic status of the family; however, it is possible that these differences exist and my sample size was simply too small to enable this identification of systematic differences. future study may seek out specific examples of differences in gender or socioeconomic status and the implications this has for the disability experience or disability advocacy efforts in tanzania. future research may also examine the developmental considerations of a family’s experience: does the age of the child impact the family experience? what are the changing health, educational, and social needs of a family as a child develops? what is the role of families in each life stage or during transitions between life stages? additionally, future research that attempts to further probe specific family strengths and create interventions based upon these strengths will be important. for example, in this study, most of the families experienced stigma in various forms. it would be useful to adopt a family strengths approach to understand how parents are presently utilising their strengths to navigate this stigma or to initiate supports which aid families to draw from their unique strengths to navigate or even eliminate the stigma that they encounter in society. lastly, and perhaps most importantly, the voice of people with intellectual disabilities themselves is too often absent from literature on intellectual disability. one area of utmost importance in future research will be to increase involvement of people with intellectual disabilities themselves in intellectual disability research in tanzania. this study, which focused upon family response to id as opposed to individual response to id, cannot be exempt from critiques of representation and voice, and i acknowledge that future studies must strive to provide a voice to people with intellectual disabilities and to incorporate their viewpoints to describe how they understand their own disability and to identify and build upon their personal strengths. acknowledgements top ↑ the author would like to express appreciation to the university of kansas african studies center and the university of kansas beach center on disability for funding this research. the author would also like to thank the helpful contributions of ann and rud turnbull, shirley hill, and the two peer reviewers on earlier versions of this manuscript. competing interests the author declares that she has no financial or personal relationship(s) which may have inappropriately influenced her in writing this paper. author contributions h.a. was the primary author. references top ↑ american association of intellectual and developmental disabilities (aaidd), 2011, ‘definition of intellectual disability’, viewed 9 september 2012 from http://www.aaidd.org/content_100.cfm?navid=21aldersey, h.m. & turnbull, h.r., 2011, ‘the united republic of tanzania’s national policy on disability: a policy analysis’, journal of disability policy studies 22(3):162–171. armstrong, m.j. & fitzgerald, m.h., 1996, ‘culture and disability studies: an anthropological perspective’, rehabilitation education 10:247–304. blacher, j. & mcintyre, l.l., 2006, ‘syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact’, journal of intellectual disability research 50(3):184–198, viewed 24 june 2012 from http://dx.doi.org/10.1111/j.1365-2788.2005.00768.x, pmid:16430730 blacher, j., neece, c.l. & paczkowski, e., 2005, families and intellectual disability, current opinion in psychiatry 18:507–513, viewed 24 june 2012 from http://dx.doi.org/10.1097/01.yco.0000179488.92885.e8, pmid:16639109 cervinkova, h., 1996, ‘disability and the other in cultural anthropology’, human mosaic 30(1–2):56–63. charmaz, k. & mitchell, r.g., 2001, ‘grounded theory in ethnography’, in p. atkinson, a. coffey, s. delamont & j. lofland, (eds.), handbook of ethnograpy, sage, london, viewed 5 march 2012 from http://dx.doi.org/10.4135/9781848608337.n11 charmaz, k., 2006, constructing grounded theory: a practical guide through qualitative analysis, sage, london. chou, y.c., lin, l.c., chang, a.l. & schalock, r.l., 2007, ‘the quality of life of family caregivers of adults with intellectual disabilities in taiwan’, journal of applied research in intellectual disabilities 20:200–210, viewed 24 june 2012 from http://dx.doi.org/10.1111/j.1468-3148.2006.00318.x cramm, j.m. & nieboer, a.p., 2011, ‘psychological wellbeing of caregivers of children with intellectual disabilities: using parental stress as a mediating factor’, journal of intellectual disabilities 15:101–113, viewed 25 june 2012 from http://dx.doi.org/10.1177/1744629511410922, pmid:21750213 defrain, j., 1999, ‘strong families’, family matters 53:6–13. denzin, n.k. & lincoln, y.s., 2008, introduction: the discipline and practice of qualitative research, in denzin, n.k. & lincoln, y.s. 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definition of pastoral care theoretical framework and methodology an overview of the apostolic faith mission in zimbabwe apostolic faith mission in zimbabwe theology and the disability theology apostolic faith mission in zimbabwe liturgical praxis and disability conclusion acknowledgements references footnotes about the author(s) nomatter sande department of religion and social transformation, university of kwazulu-natal, south africa apostolic faith mission international ministries, leicester, united kingdom citation sande, n., 2019, ‘pastoral ministry and persons with disabilities: the case of the apostolic faith mission in zimbabwe’, african journal of disability 8(0), a431. https://doi.org/10.4102/ajod.v8i0.431 original research pastoral ministry and persons with disabilities: the case of the apostolic faith mission in zimbabwe nomatter sande received: 08 sept. 2017; accepted: 09 july 2018; published: 20 feb. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the persons with disability (pwd) are the minority group dehumanized in the church. the subject of disability is complicated because of the impact of the judeo-christian teachings. the apostolic faith mission (afm) in zimbabwe is a leading pentecostal church with a pastoral ministry theology which emphasises divine healing, miracles, signs and wonders. thus, the space of pwd and how the pwd either connects or benefits from this pentecostal heritage is a critical gap in this study. objectives: the objective of this study was to explore the construction of disability through the practices and processes of the pastoral ministry in the afm. method: this study followed qualitative research and used the social model of disability as theoretical framework. the data were collected from 26 participants who are pwd and pastors using in-depth interviews, focus groups and participant observations. results: the results showed the afm pastoral practices created invisible barriers that militate against pwd. thus, the pastoral ‘divine solutions’ and ‘triumphalist messages and teachings’ are ‘prescriptive’ and ineffective in reducing ‘the plight of pwd in zimbabwe’. conclusion: the study concludes that the pastoral ministry should be ‘one efficient vehicle’ with which the church can care for and ‘transform persons with disabilities’. pastors should break the glass ceiling by expecting pastors to minister better and more effectively creating a safe space for persons with disabilities. a caring community should be the nature of both the afm and the pastoral ministry responsible for meeting the needs of the persons with disabilities. introduction in the apostolic faith mission (afm) in zimbabwe, the pentecostal theology is perceived as having become a source of hope and refuge for the suffering populace in zimbabwe. although there are harmful elements such as fraud, fake miracles and gullibility attached to the pentecostal religious landscape in zimbabwe (chitando, gunda & kügler 2013; gunda 2012; maposa & marongwe 2015), pentecostalism has attempted to address the wants and needs of the suffering people of zimbabwe. as such, employing divine solutions to the challenges has been prescribed to those seeking help. the package and tools for breakthroughs include, but are not limited to, prayer, believing in the word of god, prophecy and financial giving or seeding to both the church and the pastors. the role and significance of the church and pastoral ministry has increased in the lives of the people. the afm in zimbabwe has been regarded by its adherence as a spiritual home for both non-disabled persons and persons with disabilities. regardless of this, persons with disabilities tend to experience exclusion and stigmatisation when it comes to integration into the mainstream of faith-based organisations. no significant, deliberate theologies are targeting the plight of persons with disabilities, and as such, churches have created invisible barriers and practices that disable persons with disabilities. accordingly, the purported ‘divine solutions’ and ‘triumphalist messages and teaching’ used are ‘prescriptive’ and ineffective in reducing ‘the disability prevalence’ in zimbabwe. statistics show that the disability prevalence in zimbabwe is at 7%, amounting to 900 000 individuals (unicef 2013). definition of pastoral care pastoral ministry is one of the most potent tools in the church, responsible for communicating ideas, perspectives and attitudes. pastors are respected and given a sacred position within the religious community. pembroke (2009:1) argued that personal ministry to individuals and family is a critical component of pastoral ministry and the focus of worship is theocentric, and god is both the object and subject of worship. as such, this article argues that pastoral ministry ‘is one efficient vehicle’ with which the church can care for and ‘help persons with disabilities’. a ‘caring community’ defines the nature of the afm in zimbabwe and pastoral ministry and is the condition for the proposed transformation. magezi (2016:1) defines pastoral care as a caring ministry of the religious community. pastoral ministry is broader than pastoral care and means ‘church or parish’ ministry. the term ‘pastoral’ signifies shepherding the vulnerable (mcclure 2012:269) and pastoral care helps in building relationships in the church. accordingly, this suggests that the pastors within the afm in zimbabwe are essential to meeting the needs of both the non-disabled and persons with disabilities. further, pastoral counselling is a helping relationship with an expressly concurred, firm encouragement of relationships. thus, pastoral ministry and care bring to the fore theological perspectives of the image of god, love, compassion and social justice concerning persons with disabilities. as such, this article connects vital themes responsible for the construction of disability through the practices and processes of the pastoral ministry in the afm in zimbabwe. theoretical framework and methodology this article uses the social model of disability as the theoretical framework. disability is trans-disciplinary, permeating through medicine and theology. the social model of disability defines disability as a social construct (devlieger & de coster 2009; haihambo & lightfoot 2010; wendell 1996). in this case, the social model of disability argues that disability is something that is created by barriers that exist within the society. accepting that disability is socially constructed automatically raises questions that will help this article to analyse how the afm in zimbabwe both constructs disability and responds to the needs of persons with disabilities. this article proposes that pastoral ministry in the afm disables the persons with disabilities. thus, this article uses the social model of disability to expose these social barriers. this article uses the social model of disability not only to aid in analysing the construction of disability within the afm in zimbabwe but also to point towards strategies for addressing the challenges. methodologically, this article falls under qualitative research. the content of this article is an excerpt from the author’s phd thesis, ‘pastoral ministry to persons with disabilities: a critical investigation of how afm church can be a safe space for meeting the needs of people with disabilities (pwd) in harare zimbabwe.’1 data collection was done from in-depth interviews, focus groups and participant observations. the total number of participants was 26, and the sample consisted of persons with disabilities and pastors. the variables for the recruitment strategy involved the nature of the disability, age, sex and place of residence. the author used three tools to gather information for this article: in-depth interviews, focus groups and participant observations. the in-depth interviews were with pastors (non-disabled). the interviews gathered information about the pastoral ministry’s response to the persons with disabilities in the afm. the sample for the focus groups consisted of persons with a physical disability. because of the complexity of the disability category, the author relied heavily on how the participants would describe the nature of their disability. the author used three focus groups: the first focus group consisted of the youths from 16 to 21 years; the second group consisted of both men and women from 21 to 40 years; and the third group consisted of elder men and women from 41 and above. the focus groups explored the lived experiences of the persons with disabilities within the afm in zimbabwe. the author used participant observation and maintained a professional distance to observe and record data. being an ordained pastor in the afm in zimbabwe for more than 10 years, the author used his experiential knowledge and critically observed three afm in zimbabwe national conferences. the author focused on how persons with disabilities were treated and made meaning of the pastors’ response to persons with disabilities during the afm corporate liturgy. ethical considerations ethical clearance was obtained from the university of kwazulu-natal and the afm gave permission to conduct the research. the author ensured that the participants participated willingly in the study, and from an informed position. permission was sought to publish the research results from the participants and the author ensured the participants aware of the purpose and objectives of the study. the author emphasised that participants could withdraw from the study at any time, should they feel to do so, without stating any reason for that choice. it was made clear to participants that there was no financial benefit from this study but the participants would benefit from the contribution this research will make towards transforming the lives of pwd. the author ensured confidentiality and protection from harm for each participant by using a coding system. an overview of the apostolic faith mission in zimbabwe the afm in zimbabwe falls within the african pentecostal landscape. the azusa street revival in los angeles, california, happened in 1906 and is believed to be the outburst for the pentecostal movement. the emergence of afm in zimbabwe is associated with the migrant worker who brought the movement from south africa in 1915 (hwata 2005). the afm in zimbabwe has about 2.3 million members in zimbabwe (machingura & chivasa 2016:13; togarasei, 2016; sande 2017a). the afm in zimbabwe is regarded as a home and spiritual hub for believers. the history, prominent beliefs and liturgy of the afm in zimbabwe help to put this article in context. musoni (2013:76) argued that pentecostals seek to re-establish the miracles and holy spirit baptisms of the new testament. pentecostalism relies on the holy spirit and gifts of the holy spirit, and a longing for remarkable encounters, healings and deliverances (anderson 2004). pentecostals yearn for the infilling of the holy spirit which is believed to bring the power of the holy ghost in the daily lives of the believers as attested by acts 2:8. pentecostals create room for divine manifestation and the ‘unexpected to happen’ (smith 2010:39). also, dayton (1994:26) argued that the pentecostal experience goes with the supernatural elements of the holy spirit, showing that divine healing is both a gift of god and sign of the presence of god in believer’s life. divine healing and restorative miracles are believed to be prominent in the afm in zimbabwe. the afm in zimbabwe believes that the blind receive sight, the lame will walk and the dumb will speak. burger et al. (1997:167) argued that one of the reasons people joined the afm in zimbabwe was because of healing they received or that was testified to them. as such, people give testimonies about how god will have performed miracles in their lives. thus, testimonies are pentecostalism’s most profound characteristics. testimonies of what god is doing in the life of the believers are key in afm in zimbabwe. hollenweger (1999:36–39) contends that ‘oral liturgy’ is a narrative theology that incorporates, dreams, visions, healings and the interests of the entire group in worship. thus, pentecostals have a culture that communicates orally to develop a theology. the roots of oral culture make testimonies prominent in pentecostalism, and these are formulated through stories and not abstract propositions (cartledge 2010:17). however, macchia (2003:1120) thinks that the word ‘oral’ does not encompass the written testimonies used by the early church at azusa street revival, so he prefers the term ‘non-academic theology’. therefore, to understand the pentecostal religious rhetoric, one needs to analyse the content of prayers, declarations, music and sermons. music is a powerful tool used by the afm in worship. singing and dancing for the lord are essential in the afm in zimbabwe. albrecht (1999:159) remarked that: ‘the tone and the words of the [more meditative] songs help to move the worshipers into a more “intimate communion”’. further, ‘the music of the pentecostal song service … seeks to help usher the congregation into the presence of god’ (p. 143). also, warrington (2008:219) argued that ‘pentecostals expect to experience an intimate relationship with god in which he is felt, and they are moved emotionally’. laying on of hands is essential, and the holy spirit gives directions for missions. the afm in zimbabwe focuses on the four-square gospel that emphasises that jesus saves, jesus heals, jesus baptises in the holy spirit, and jesus is coming back again. woodall (2016) argued that the early pentecostals embraced a fourfold gospel that emphasised jesus as saviour, sanctifier, healer and coming king. therefore, salvation in pentecostalism is satisfied when the believers participate in these four areas. additionally, in the afm in zimbabwe, there is a component of ‘spontaneity’ in the pentecostal spirituality. there is an assumption that the holy spirit directs the church and inspires the believers. as such, the believers wait on the holy spirit and desire to function under the spiritual gifts. speaking in tongues is vital to the afm in zimbabwe’s theology and praxis. chinyemba (1999:49) showed that speaking in tongues helps the believers to be healed and receive automatic blessing and joy. all bible students in the afm in zimbabwe must exhibit the ritual of speaking in tongues (machingura 2011:18). the prosperity gospel is prominent in the afm in zimbabwe, and this has attracted many people to come to church. the prophetic voice has led the pentecostal churches in zimbabwe to attract many followers (sande 2017b:49). apostolic faith mission in zimbabwe theology and the disability theology theologies, church doctrines, traditions and beliefs have a way of giving meaning to disability. analysing the famous theologies of the afm in zimbabwe helps to understand how they construct disability in the afm in zimbabwe. therefore, the use and interpretation of biblical texts that relate to disability provide links to how disability is constructed in the afm in zimbabwe. findings from this study showed that there is no clear theology about disability within the afm in zimbabwe. individuals approach issues of disability based on their convictions. one pastor argued that: ‘i rely on the bible and the leading of the holy spirit to judge a situation at hand. at times the holy spirit tells me that this disability is the work of the devil.’ the bible remains authoritative in the afm in zimbabwe, but the interpreters are ambivalent when it comes to disability issues. both the old testament and the new testament present the position and space of persons with disabilities differently. for instance, in the law (lv 21:18–20) the persons with disabilities are not allowed to reach the israelite congregation of worship. in the new testament, persons with disabilities were also marginalised and found outside the synagogues, like the blind man sitting at the beautiful gate (ac 3:2); it is after healing that the blind man went into the temple. accordingly, applying the social model of disability, such ambivalence is a barrier for persons with disabilities because pastors can interpret disability in any particular way. in this case, biblical interpretation is at the centre of denigrating persons with disabilities, if it is left open without an institutional position. all the pastors who participated in this study accepted that the subject of disability is difficult to deal with theologically. they highlighted that there is no subject at living waters theological seminary (lwts)2 pastoral training curriculum that deals with disability studies. i also conducted a documentary analysis of the afm in zimbabwe constitution and found out that they do not have any information relating to persons with disabilities. the lwts library has no braille bible, neither are there facilities like ramps for persons with disabilities to use. such absence of a curriculum, voluntary programmes for persons with disabilities and facilities is worrisome in this 21st century context. this study could not establish the reasons for such a status quo, but recalls the thrust of the social model of disability which explains that disability does not lie with the individual persons with disabilities, but it is the society that disables them. the afm in zimbabwe must empathise with persons with disabilities and deliberately develop structures, programmes and even policies that help them. the theology of exorcism and deliverance in the afm in zimbabwe has an impact on disability. from the author’s observations, many afm preachers in zimbabwe, who are predominantly pastors, and lay workers create an impression that disability is the work of the devil. there is a great deal of talk about the devil, and how the powers of darkness cannot rule the believers. one of the services during the conference was dedicated to ‘deliverance and breakthroughs’. what was topical in this preaching and teaching was that the devil is the source and author of all bad things in life. in fact, most of the sermons’ rhetoric reiterates that satan does not want believers to enjoy a good life and one must thank god because you are not disabled (you can walk, talk and see). the belief is that all life challenges that believers face, like poverty, barrenness, misfortunes and disability, are caused by demons. the preacher declared that any health condition or bad situation that is suspicious and may be the devil’s foul play warrants exorcism and deliverance; the preacher has served notice; and breakthrough is guaranteed for any congregants thus suffering. therefore, the afm in zimbabwe’s theology of exorcism and deliverance categorises disability as caused by evil spirits. sande (2017c:1) argued that victorious living, breaking poverty and stubborn spiritual vices are the marks of pentecostal theology in zimbabwe. consequently, the theology of exorcism and deliverance loosely links bad things to the devil, constructing meaning from disability in the afm in zimbabwe, and does not give room to explore the complexity of the categories of disability. so, the inference that pastors make during exorcism and deliverance sessions labels persons with disabilities. consequently, this coincides with the social model of disability viewpoint that society disables persons with disabilities by making them objects of deliverance. such hermeneutics are suspicious and cannot be tolerated in the community of those who are purported to have received salvation. using the social model of disability framework as a prescriptive framework, the afm in zimbabwe’s pastors need to reinterpret all negative biblical narratives about disability positively. amanze (2014:264) argued that the christian theology of disability should articulate that god is for and is on the side of persons with disabilities because they bear the image of god. on the contrary, the process of exorcism and deliverance has negative connotations. in a study from kenya, kabue (2011:14) lamented that some exorcisms are abusive, at times involving beating or lashing. psychologically, to treat persons with disabilities as needing deliverance and exorcism without establishing the causes of disability is spiritual abuse, and the persons with disabilities are at the receiving end. the theology of demonstration of the power of god is prevalent in the afm in zimbabwe. there is a belief that the ‘calling’ upon a pastor must be authenticated by the flow of the power of god during ministry. all the pastors who participated in this study believed that demonstration of power is when miracles happen, especially when the blind see, the lame walk and the deaf hear. hence, the objects for the demonstration in this case are persons with disabilities. the belief is that disability is an abnormality which needs correction. hull (2004:11) argued that the existence of persons with disabilities is a continual reminder of fallen humanity, which is imperfect and is hoping to be redeemed. so, in the afm in zimbabwe, the restoration of physical ability proves the existence of the power of god. a pastor passionately said: ‘we are a pentecostal church, we believe in miracles, in this church the blind, lame and deaf used to heal. where is that god, i tell you today such anointing is still available.’ he further elaborated about the miracles that purportedly followed the sekuru chihari ministry. such sentiments show that the afm in zimbabwe has the mandate to restore persons with disabilities and strives to satisfy today the reality of the new testament scriptures which demonstrate such restoration. the social model of disability helps in this article to see how the theology of ‘demonstration of power’ in a way reduces the human dignity of persons with disabilities. persons with disabilities are devalued to channels allowing the flow of god and his attestations. in as much as miracles are a reality in the afm in zimbabwe, targeting persons with disabilities becomes a snare. belser (2015:177) suggested that the goal of disability theology is to honour the dignity of persons with disabilities’ lives and to act in solidarity with activists striving for disability justice. the pastoral ministry must accept that the salvation of the souls of persons with disabilities is essential, more so than their conditions. so, this helps pastoral ministry not to approach disability from a position of pity or sympathy, but perhaps from pastoral care. as such, the afm in zimbabwe’s endless prayers towards restoring persons with disabilities and demonstrations of power denigrate the dignity of the persons with disabilities by excluding them from free participation in the religious worship. demonstrations of power must not disable persons with disabilities, as shown by the social model of disability. but an authentic theology of demonstration of power should foster a spirit of love and belonging, and create a caring community for persons with disabilities. a ‘caring community’ defines the nature of the church and pastoral ministry and is the condition for the proposed transformation. tools of pastoral care should empower persons with disabilities to experience the triune god and develop holiness and wholeness. by linking scriptural content with the everyday world and life, pastoral ministry can address the predicament of persons with disabilities and meet their needs. the pastors in the afm in zimbabwe, and perhaps the entire pentecostalism in zimbabwe, must be versatile in their approach to dealing with the issues surrounding disability. healing theology is at the centre of the afm in zimbabwe praxis. gaiser (2010:56) argued that in the bible, healing is both a communal and a social affair. over half of the participants from focus groups concurred that the church’s first reaction upon encountering persons with disabilities is anticipation for miraculous healings or eradication of their disabilities through divine intervention. such an attitude constructs disability as an illness needing treatment. the healing stories of jesus have served as proof of the moral imperfection of people with disabilities (grant 1998:77). during the afm in zimbabwe conference (august 2016), i heard the preacher calling categorically for persons with disabilities to come for healing prayer. such a ‘call’ leaves them with no options but to go to the front with others having different type of diseases. so, unconsciously, this practice makes the non-disabled feel that the persons with disabilities need healing. such biases enhance the marginalisation of persons with disabilities by violating their liturgical freedom. prayer lines and calls to persons with disabilities are internalised praxis barriers that render persons with disabilities second-class. a quarter of the persons with disabilities in this study said they feel embarrassed every time they go to the ‘healing line’, and they are not healed. therefore, formal spiritual declarations by the pastors that ‘today is your day’ of healing create a poor self-image in persons with disabilities. clifton (2014:213) argued that rather than helping persons with disabilities, ‘the way pentecostals preach and pray for healing, impacts negatively people who are not healed especially those with a disability’. the framework of the social model of disability provides clues about unjust structures, attitudes and perceptions that society holds against persons with disabilities. religion plays a significant role in shaping the identity of persons with disabilities (nzayabino 2005:27), and this practice creates a negative picture of persons with disabilities. the author also observed in the afm in zimbabwe that many of these healing prayers targeting the persons with disabilities did not bring about the healing that is claimed by the preacher before the prayer. in this vein, the social model of disability advocates that it is the society (pastorate) that has to change and not the conditions of persons with disabilities. woodall (2016) argued that in pentecostalism, while many may receive healing and miracles, other faithful believers remain sick despite much prayer. unfortunately, these individuals feel isolated and try to hide their disabilities because of embarrassment or the personal feeling of condemnation in a church environment which emphasises miracles and divine healing. apostolic faith mission in zimbabwe liturgical praxis and disability this section explores the afm in zimbabwe liturgical praxis like praying, altar calls and testimonies, songs and music, religious marketing, and how disability is constructed. most of the marginalisation of persons with disabilities in the afm in zimbabwe is secretly reinforced by the liturgical expression toward them in the church. from the author’s participatory observations, the church conferences are usually the most suitable playing fields or grounds in which the ‘us’ and ‘them’ dichotomy is played out in the afm in zimbabwe. typical rhetoric reiterated by the clergy at conferences, especially when praying for the sick and persons with disabilities, is that they should stir up their faith and expect a miracle because today is their day. a third of the focus group participants explained that when such miracles do not happen as preached and promised, they partly blame themselves. accordingly, this offers a very different and challenging view to the pastoral ministry, not just about the nature of the problem of praying for persons with disabilities, but also about how to integrate human agency and divine agency when miracles fail to happen. equally important, for today at least, it raises the question as to whether miracles have a role to play in dealing with disability. eiesland (1994) argued that the pentecostal churches make one feel they are responsible for the required ‘cure’ as the church’s aim is the ‘normalisation’ of persons with disabilities. in this light, and to correct it, it is vital for pastors to utilise extra-biblical materials as they engage with persons with disabilities – for sensitivity when preaching or doing pastoral duties in the context of persons with disabilities. pembroke (2009:21) argued that preachers must connect the theology of the text with experiences from scholarly debates coming from disciplines like anthropology, psychology, sociology or philosophy. instead, praying for persons with disabilities is either positive or negative, and that increases specific demands and responsibility on persons with disabilities and the congregation. the demand is that persons with disabilities accept prayers and ill-treatment/marginalisation. also, prayers increase the demand for congregation to accept persons with disabilities rather than a collective working together of pwd, believers and pastors. white (2014) argued that when it comes to the work of christ in the world and within our lives, there is no difference between the persons with disabilities and the non-disabled. therefore, pastoral ministry to the persons with disabilities must change and shift from the dichotomy of us (pastors) and them (persons with disabilities) to the position of ministering with the persons with disabilities. thus, besides the focusing of laying hands on persons with disabilities, the pastoral ministry needs to spend considerable time formulating strategies on how to minister meaningfully to persons with disabilities. such an approach would provide opportunities for creating safe spaces for persons with disabilities in the church. assuming responsibility for the persons with disabilities means that ‘the church should be open to the persons with disabilities, to fulfil its call to take care of the disadvantaged and vulnerable’ (basselin 2011:48). if basselin’s argument is anything to go by, then the responsibility of the pastors does not only involve the ‘altar call’ and ‘laying of hands’ on the lame, blind and deaf among others, but includes accepting and creating space, creating an enabling environment for persons with disabilities to feel secure and acknowledging them as ordinary human beings. testimonies are a crucial component in the afm in zimbabwe. they act as the tool for both missions and authenticating the presence of god in the church. burger et al. (1997:167) argued that most people join the afm in zimbabwe because of hearing testimonies. for example, the afm in zimbabwe named their national shrine as ‘rufaro’, meaning happiness. this was given as a result of how people witnessed the hand of god and testified publicly to the phenomena. in this study, many testimonies of deliverance and healing were given at the general conferences in august 2016. the candidates were awarded the time to describe their conditions and how the power of god had moved upon them and also healed them. the congregants would like to respond distinctly because it gives them a sense of serving a mighty god, and many people would cheer and glorify god. in this study, it was hard to explain how emotional testimonies impact persons with disabilities, but i would assume that they would like to receive such miracles and one day testify like the non-disabled. by understanding the implications of the social model of disability, testimonies of the non-disabled put a demand on persons with disabilities; persons with disabilities are pressured to participate in the faith and also to offer testimonies about themselves. one participant testified that the devil wanted to ‘cripple her’ and ‘make her a useless person’, but glory is to god who makes our triumph. of course, one could testify and praise god, but to equate disability and suffering, and that god hates it, is overstretching. therefore, testimonies of what god is doing in the lives of believers create a view that persons with disabilities are suffering because of their condition. thus, applying the social model of disability in this study, testimonies can be a barrier to persons with disabilities because they fail to account for the needs of persons with disabilities. further, the consequences of this failure not only apply to pastors – the congregation has a role to play in transforming pastoral ministry to persons with disabilities. by applying the social model of disability perspective, the way non-disabled people speak and explain experiences can form barriers to persons with disabilities. so, the testimonies in the afm in zimbabwe encourage persons with disabilities to participate in the church activities but at the same time stereotype persons with disabilities as weak. further, it may be entirely appropriate for pastors to have the responsibility to teach about and expose invisible barriers – such as unjust structures, attitudinal challenges, ideological issues, demeaning and superiority complexes – that militate against persons with disabilities. accordingly, there is a link between pastoral ministry and worship in the life of the persons with disabilities. in this case, pastoral care will be the help provided to persons with disabilities in times of emergency and the routine of day-to-day life by lay or ordained christians. the singing of certain hymns, using music and dancing are pillars of the afm in zimbabwe worship. one outstanding feature i observed during the conference is how the afm in zimbabwe use songs as an instrument to communicate their theology about their love for god. although the songs seemed to make the believers connect with the supernatural world, the content of the message was worth taking note of. the content of some hymns uses physical blindness as a metaphor for spiritual fault, an example being the following afm in zimbabwe hymn: mweyamustve wamwari [spirit of god] rega kundipfuura [do not pass me] ngandione ndiri bofu [let me see i am blind] taurai izwi rinesimba3 [speak a powerful word] …3 songs in the afm in zimbabwe create a mechanism of stigmatisation by describing ‘physical blindness as spiritual fault’ versus physical sight as spiritual maturity, darkness as abnormality versus light as normality. such liturgical expressions suggest that there are some actions the afm in zimbabwe performs without thinking deeply about the impact it may cause to the person with disability. this is in line with the finding of earey (2012:11) who contended that the language of some songs and hymns marginalises the persons with disabilities. for example, for persons with disabilities who live in darkness as a normal state, equating darkness with sin has a negative impact. another liturgical expression i observed during my participant observation is that their phrases, such as ‘lets us raise our hands to the lord’ and ‘let us close our eyes’, presuppose that everyone has hands, eyes, legs. the author observed that there were no facilities like ramps and sign language interpreters to help persons with disabilities. currently, at the time of doing this study in 2017, most churches in zimbabwe have embarked on religious branding and marketing. the demands for modernity and the information technology age have forced the afm in zimbabwe to advertise their spiritual product. as such, in a way, most afm in zimbabwe pentecostal conferences’ advertising has a bearing on disability. the central themes are advertised during the services. the church expects that the lame should walk, the deaf and dumb should speak, and the blind should receive their sight. the author observed that the pastors rhetorically feature the need for miracles in the bulk of their sermons. it would seem to imply that the frustration in the church, because it cannot ‘restore’ the persons with disabilities to what is held to be normal, is the source of the church’s adverse treatment of persons with disabilities in the church. although marketing the services and sermons for the people to attend, the conferences and service in the afm in zimbabwe are good, but the methods used fortify the negative attitudes and beliefs about disability. one participant who was a male, aged above 40 years, said that: ‘at church, persons with disabilities encounter problems they encounter outside; in fact, such a person will be having layers of disadvantage: from the family, the society and the church with discrimination constituting the most significant percentage of those drawbacks.’ accordingly, this finding agrees with that of wolfensberger (1988:15–16) who argued that the marginalisation of persons with disabilities comes when people view them as objects of charity needing healing. he further pointed out that the christian community devalues persons with disabilities by viewing the disabled as the ‘other’ or ‘alien’. therefore, that the christian community sees disability as a temporary affliction that must be endured to gain heavenly rewards. mutswanga, makoni and chivasa (2015:174) argued that ‘the mainstream thinking in the pentecostal circles in zimbabwe have turned a blind eye to the issues of stigma to the persons with disabilities’. it is problematic in this study to ascertain how much the societal perspectives outside the church affects the persons with disabilities. in describing the social model of disability, barnes and mercer (2010:163) explain that society is responsible for disabling persons with disabilities. perhaps the problem of adverse treatment is not limited to the afm in zimbabwe. in the context of the afm in zimbabwe, the social model of disability comprehends the effect of pastoral ministry and care of persons with disabilities. the implication is that the afm in zimbabwe should take a leading role in efforts to correct these negative attitudes towards persons with disabilities, because most of the attitudes and sentiments have their roots in religious doctrines. conclusion the intended goal of this article was to explore the afm in zimbabwe pastoral ministry’s response to disability. the article explored the practices and processes through which disability in the pastoral ministry of afm in zimbabwe is constructed. the findings from this article showed that there are invisible barriers that militate against persons with disabilities, and both the pastors and the congregation need to seriously consider the human rights of persons with disabilities and their divine worship space. inevitably, the pastoral ‘divine solutions’ and ‘triumphalist messages and teachings’ are ‘prescriptive’ and ineffective in reducing ‘the disability prevalence in zimbabwe’. thus, the pastoral ministry should be ‘one efficient vehicle’ with which the church can care for and ‘transform persons with disabilities’. pastors should break the glass ceiling by expecting pastors to minister better and more effectively, creating a safe space for persons with disabilities. a caring community should be the nature of both the afm and the pastoral ministry responsible for meeting the needs of the persons with disabilities. acknowledgements the author’s deepest gratitude and appreciation goes to his supervisors dr sibusiso masondo and dr beatrice okyere-manu. throughout the duration of his research work, they have patiently and diligently guided him with invaluable suggestions and helpful critique which enabled him to accomplish his research study. competing interests the author declares that he has 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woodall, j., 2016, ‘the pentecostal church: hospitality and disability inclusion. becoming an inclusive christian community by welcoming mutual vulnerability’, journal of the european pentecostal theological association 36(2), 131–144. footnotes 1. phd in religion and social transformation, university of kwazulu-natal, fieldwork data collected in harare, zimbabwe, in 2016. 2. living waters theological seminary is the afm training wing. it was established in 1974 and has attracted a considerable number of students from southern africa. 3. nziyo dze chipositori afm shona hymn: ishe ndinzwe nokufara. abstract introduction literature review social model of disability sen’s capability approach research methods and design findings and discussions conclusion acknowledgements references about the author(s) jayshree singh school of education, college of humanities, university of kwazulu-natal, durban, south africa sachin suknunan student services division, university of kwazulu-natal, durban, south africa citation singh, j. & suknunan, s., 2023, ‘universal design of instruction to enhance learning for university students with visual disabilities’, african journal of disability 12(0), a1156. https://doi.org/10.4102/ajod.v12i0.1156 original research universal design of instruction to enhance learning for university students with visual disabilities jayshree singh, sachin suknunan received: 11 oct. 2022; accepted: 09 oct. 2023; published: 20 dec. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there has been a steady increase in the number of students with disabilities (swd) in higher education institutions (heis) in south africa, with a significant number of students having visual disabilities. equal access remains a key challenge in the classroom setting, thus emphasising a significant gap. objectives: this paper capitalised on the significance of this gap and examined the potential of universal design of instruction (udi) to promote equal access for students with visual disabilities (swvds) in the classroom within a university setting in order to maximise learning outcomes. method: the study was conducted at the university of kwazulu-natal (ukzn), which had approximately 204 swvds. this paper draws primarily on the quantitative component of the study. data collection entailed distributing a questionnaire to all swvds. analysis was conducted using spss 21, which produced descriptive and inferential statistics. the theoretical framework of sen’s capability approach in line with the social model of disability was applied. results: findings indicated a lack of udi in the classroom with very little compliance to all principles, resulting in increased challenges in teaching and learning for swvds. the incorporation of udi in the classroom does have a positive correlation with learning outcomes. conclusion: the incorporation of udi principles can offer a potential design for easier access to teaching and learning to enhance and maximise learning outcomes; alleviate access challenges in the classroom; and address the negative experiences thereof for swvds. contribution: the study adds value to the scarce body of knowledge on udi in the classroom for university swvds from a learning enhancement perspective. keywords: disabilities; diversity; higher education; inclusion; students; university; visual disability; universal design of instruction. introduction the numbers of students with disabilities (swd) admitted to higher education institutions (heis) are increasing, thus complementing the social model of disability. however, while efforts are being made to increase accessibility from a physical access perspective, little is known about the potential of the universal design of instruction (udi) to improve access and achievement in the classroom for swd. in addition, globally, there is an abundance of research on udi for students with visual disabilities (swvds) in universities in developed countries, yet there remains a paucity of such research and practice within a south african setting. while limited south african research studies do focus on inclusive learning, not many of them focus on udi in the classroom, which is the essence of the study. although this is not specifically a study of inclusive education per se, it is an in-depth study to ascertain the applicability of udi to a higher education context. despite international, national and higher education legislation on anti-discriminatory practices, persons with disabilities continue to experience exposure to social and educational exclusion (subrayen & suknunan 2019; dutta 2013 and rahman 2019). universal design of instruction encourages resourceful and inclusive pedagogy by presenting curriculum design and learning environments which can be fully adapted to accommodate the diversity of swd at university (brandt 2011 and harbour & maudous 2011). this paper will contribute to the gap in the existing body of knowledge in a south african setting, and the implications of this can inform various policy and practice contributions from any stakeholders in south african heis. africa is a developing continent and it is imperative to identify the need to employ strategies that incorporate udi in higher education, thus placing the country at a competitive advantage in the global sphere. the findings and discussion presented in this article are based on part of the researcher’s phd study (singh 2022) that focused primarily on swvds in the classroom. the mixed-method study examined the potential of udi to enhance learning outcomes for swvds and counteract the challenges experienced in the classroom that hinder them from academic achievement and the capabilities thereof. because of the study being large and extensive in nature, this paper draws primarily on results from the quantitative components of the study. literature review the authors prefer to use the term ‘students with visual disabilities’ as it is more appropriate within the social model of disability. impairment refers to a problem with ‘physical organs’ and thus more aligned to the outdated medical model of disability. the social model of disability positively evolves from the preceding model whereby impairment is seen as a ‘disability’ that can be accommodated through reasonable accommodations that can be implemented for equal access. visual disability is a generic term used to describe a wide range of visual problems (rahman 2019). it includes categories such as total blindness, mild and severe cases of visual impairment. the manner in which the learner uses residual vision is the main concern of educators. based on the educational definition of visual impairment, completely blind refers to severely challenged students who must learn braille in order to read and write, and low-vision students use their residual vision as a primary sense to deal with visual demands concerning suitable assistive devices (rahman 2019). dutta (2013) rationalised that inclusive education should facilitate access to the same information, at the same time and possibly in the same way to promote the involvement of swvds in mainstream classroom settings. this paper strongly agrees with dutta (2013) that swvds face barriers to learning and that heis should break down these barriers through tactile resources to further promote inclusion. the centre for universal design (1997) defines the seven principles of udi as: equitable use: the design must be usable to swvds. flexibility in use: the design should accommodate a wide range of individual preferences and abilities. simple and intuitive use: the design must be user-friendly regardless of the user’s experience, knowledge or language skills. perceptible information: the design communicates necessary information effectively to the user, regardless of abilities. tolerance for error: the design caters to and minimises the adverse consequences of accidental or unintended actions. low physical effort: the design can be used efficiently and comfortably and without strain. size and space for approach and use: the design must allow use regardless of the person’s body size, posture, or mobility. according to ngubane-mokiwa (2016:2), the main objective of applying udi is to ‘promote access, participation and progress’ in the pedagogy for all learners, including swvds, by applying its seven principles in the classroom. in a global context, research that entails the possibility of implementation of udi in the classroom to enhance learning capabilities and outcomes for swvds abounds (haegele & hodge 2016; zajadacz 2015 and burgstahler 2015, 2017, 2018). a close examination of relevant literature depicted udi as a relatively new framework in higher education. this included studies by izzo, murray and novak (2008); embry, parker and scott (2005) and rickerson and deitz (2003). universal design of instruction motivates the development of teaching methods and strategies that are innovative, effective, and efficient (higher education opportunity act [heoa] 2008). the inclusion of such a definition in the first federal legislation of the united states (heoa 2008) demonstrated the escalating importance of the inclusion of udi at heis (izzo 2012). universal design of instruction is a catalyst in bringing about flexibility and creativity to instructional methods, thus allowing swvds to acquire knowledge by capitalising on their strengths. other studies consulted included those by singh (2017); brandt (2011); and harbour and maudous (2011), wherein the udi encouraged an innovative and inclusive pedagogy and valued the diverse range of learners. this was found to be consistent with the republic of south africa, department of higher education and training’s (rsa, dhet 2013) mandate. in addition, the study draws from universal design systems based on the higher education opportunity act (2008) and the united states’ department of education’s national education technology plan (2010), where it was emphasised that udi was a framework that benefited all learners. as such, adherence to the set principles of the universal design approach could propel the university to the next level in the transformation towards greater accessibility for swvds. organisations such as the association on higher education and disability (ahead) have recognised the importance of udi (roberts et al. 2011). the higher education opportunity act of 2008 described it as a ‘scientifically valid framework for guiding educational practise’ (roberts et al. 2011:7). the above legislation consulted supported the study in exploring the potential of the udi in promoting inclusive learning to enhance learning for swvds in the higher education classroom. several scientific research outcomes have suggested that progress has been achieved (bhattacharya 2017; de montfort university [dmu] 2019; munene 2017). inclusive education in high-income countries and many low and middle-income countries have adopted accessibility policies and are reaping the benefits. this study embarked on an extensive global search to improve current perspectives on how to introduce inclusive education practices for swvds in the classroom by focusing on the values of diverse societies and their logical co-existence with swds. it was observed in studies by dmu (2019), munene (2017), and bhattacharya (2017) that the implementation of accessibility standards evolved and they are well-implemented in some countries that appear to be beyond the reach of countries like south africa because of their limited resources and inadequate enforcement and adherence to policy. to increase the access and independence of swvds and all students within the classroom, udi implementation is appropriate in creating instructional goals, methods, materials, and assessments that work for everyone (black, weinberg & brodwin 2014). many universities in south africa, inclusive of university of kwazulu-natal (ukzn), still apply outdated teaching and learning methods where the presentation of the lecture is predominately through projector slides and the chalkboard, with the expectation that everybody understands. hence, universities need to adapt to change because the historic education systems did not meet the requirements for the diverse groups such as the swvds they support today. therefore, this study embarked on the exploration of a highly recognised model that has been implemented in other countries globally to tackle such a problem. the university of connecticut (harbour & maudous 2011) and the university of washington (burgstahler 2013) have successfully implemented udi. however, there is no supporting evidence as to whether or not universities such as ukzn are udi-compliant in the classroom. the potential of becoming compliant needs to be explored in order to facilitate or maximise learning outcomes for a growing number of swvds. there is an abundance of research on udi in higher education in developed countries, along with other developing countries around the world raising important questions about udi and its implementation in classrooms and educational systems (dalton, mckenzie & kahonde 2012). based on such studies, the researcher raises the general question of why there is such a paucity of universal design systems in heis within a south african context. based on various internet searches via the academic search engine strategies that incorporate udi in higher education in south africa, these factors have not been adequately researched nor are there similar studies of this nature across the continent of africa itself. this paper therefore exploited this gap from a quantitative perspective in terms of inclusive learning in the classroom through udi, with a particular focus on swvds. social model of disability the social model takes the view that if a certain disorder cannot be modified, then outside situations need to be adapted or else swvds may experience stigmatisation and feel of less value to society if seen only from the perspective of their dysfunction (zajadacz 2015). the social model of disability could provide possibilities to create an all-inclusive learning environment that promotes equivalent opportunities for all (shava 2008). accordingly, this study drew on the fundamental elements that the social model presents on the removal of barriers and its role in increasing the quality of life for swvds. the capability approach aligns with the social model in that the lack of resources can in itself be the catalyst of impairment and/or disability (mitra 2006). the lack of resources is what causes the disability, which draws similarities with the social model that sees disability as a social construct. disability is not centred on the individual but on the social environment that imposes disability by the way swvds are unnecessarily isolated and excluded from full participation in society (mitra 2006). sen’s capability approach sen’s capability approach was found to be a highly applicable model for the implementation of udi to maximise learning outcomes in the classroom as it focuses on promoting equal opportunities and equal participation in the classroom, increasing educational development and transformation, increasing autonomy and providing opportunities to achieve. according to sen’s capability approach, capability is understood as a practical opportunity and functioning is the actual achievement of the individual (mitra 2006). functionings are states of ‘being and doing’ such as being well-nourished, having shelter and education. in using the capability of education, swvds can achieve the function of being valued and contributing members of their society. as a result, experiencing educational equity and being granted the opportunity to participate equally in society lead to an improved quality of life, which is central to the capability approach (schiemer 2017). broderick (2018) explained that capabilities represent the innate potential of each individual to achieve various outcomes. if swvds are provided with the necessary resources, they will be able to function efficiently and produce the desired outcome or achievements such as reading, writing, or communication. this study proposes to enhance capabilities by introducing udi and embracing the view that human development was a ‘participatory and dynamic process’ that was not primarily concerned with basic need satisfaction (alkire 2010:5). respect for human diversity and equal opportunities are other central tenets of the capability approach as they focus on achieving justice by expanding an individual’s capabilities (broderick 2018). broderick (2018) and mitra (2006) share the view that deprivation of opportunities because of a failure to provide reasonable accommodation results in disability and constitutes a form of discrimination. furthermore, article 24 of the united nations convention on the rights of persons with disabilities (united nations convention on the rights of persons with disabilities [uncrpd] 2006) focused on system changes which involved reasonable accommodations and effective student-centred support for swvds (broderick 2018). therefore, this study finds the capability approach appropriate as it identifies that inclusive education and educational equity are leading approaches to empower swvds to live a life they value (schiemer 2017). research methods and design the ukzn became the chosen location for the study. the institution has the highest enrolled swd in the country and hence provided an ideal environment for a study of this nature to be conducted. at the time of the study, the institution had a total of 204 swvds (disability services unit 2019). the study adopted a mixed method approach, including both qualitative interviews and quantitative surveys. the quantitative approach involved all swvds across the university. the data-collection process involved the administration of questionnaires to these students in appropriate formats for increased accessibility and understandability. as such, questionnaires were made available to all swvds via an online tool known as google forms®. the response rate for the quantitative component was 21 respondents, which contributed to almost 10% of the total population of swvds at the institution. data-collection methods and instruments the research instruments were pilot tested by the disability information access officer, who is also blind. this added value to the process as he validated the research instruments and tested screen-reading capability. furthermore, it ensured that the questionnaire was accessible and readable via screen-reading software to swvds. the first page of the questionnaire provided swvds with an overview of udi which outlined the seven principles thereof. upon understanding the objectives of the study, swvds were encouraged to respond to the survey questionnaire. the same students also participated in the qualitative component of the study and were already familiarised with udi in conversations with the researcher/writer. data analysis the study instrument was developed around the research questions and theoretical frameworks. a questionnaire built on likert scales was used to extract data through closed-ended questions (zohrabi 2013). the data were analysed and interpreted using applicable quantitative techniques via spss version 21, such as reliability testing, descriptive statistics, and correlation analysis. ethical considerations all procedures performed in studies involving human participants are in accordance with the ethical standards of the institution. the research was conducted in line with ukzn’s ethical standards for research that involved obtaining ethical clearance from the humanities and social sciences research ethics committee. ethics consent was received on 03 april 2020. the ethics approval number is [hssrec/00000872/2019]. the gatekeeper’s letter was obtained, granting permission to conduct research at the ukzn. in addition, informed consent forms ensured voluntary participation. anonymity and confidentiality were strictly maintained during the data-collection process and the researcher ensured no physical, emotional, psychological, or reputational damage to the participants. findings and discussions reliability and validity were discussed as aspects of precision where cronbach alpha scores indicated a high degree of reliability. collectively, the overall cronbach alpha score was above 0.7, indicating a high degree of reliability (lakshmi & mohideen 2013). biographical attributes the biographical attributes of the respondents indicated 38% males and 62% females. this indicates a high number of female swvds embarking on their studies at the university, which complies with the women empowerment and gender equality bill (2013) (section 9 of the constitution of the republic of south africa 1996). the nature of disability there was an almost equal distribution of various disabilities related to visual impairment reported by all 21 students (figure 1). this added value thereby indicating the variety of visual disabilities experienced by students. hence these students would be able to provide a first-hand account of their experiences. figure 1: graphical presentation of the nature of disabilities at university of kwazulu-natal. campus and college there was good distribution across all campuses. however, the majority of participants were from the howard college and edgewood, which is in accordance with statistics from the ukzn disability support unit (2021). the majority of the students were from the college of humanities. this is a logical finding as according to the ukzn disability support unit (2021), the majority of swvds are from the humanities college. year of study there was a fair distribution in terms of year of study, thereby providing a multi-pronged perspective from respondents in various levels of study. the rate of university of kwazulu-natal’s compliance to the principles of universal design of instruction in their classroom environment on a scale of 1–10, where 1 is very poor/non-compliance and 10 is extremely compliant, respondents were asked to rate ukzn’s compliance with the principles of udi in their classroom environment. statistics indicate that 13 of 21 respondents gave a ranking of 5 and below for udi compliance in the classroom, thus indicating a lack of udi in the classroom. current learning experiences in the classroom figure 2 indicated that the current learning experiences of swvds were fraught with difficulties. figure 2: current learning experiences in the classroom. over 60% of swvds indicated a lack of udi compliance. baheta and rabenstein (2018) explained that udi principles provided multiple modes of learning to support students with and without disabilities in their learning experiences. the lack of udi in the classroom has resulted in various challenges and this contributes to the overall negative experiences of swvds, as reflected by an almost equal agreement and disagreement that the lecturer/instructor appropriately engages in learning content with swvds (figure 2). respondents primarily reflected uncertainty and disagreement with essential learning and reading materials being available to them in alternate formats or essential lecture content or information during lectures presented in multiple formats to accommodate their disability. assignments also did not make accommodations for different formats relevant to the needs of swvds, and neither were tests and exams conducted in a way that allowed them to express their comprehension in alternative ways. as udi implementation involved an adjustment to formats that can improve constraints and access to course content, embracing a new educational perspective aligned with the seven principles of udi will in turn promote an all-inclusive classroom environment that will increase the satisfaction of the needs of swvds and enhance academic achievements (dutta 2013; munene 2017). in addition to descriptive statistics, some inferential statistics showed positive relationships affiliated with udi and enhanced classroom learning for swvds. there was a positive correlation between ukzn’s compliance to the principles of udi and current learning experiences in the classroom (0.447*, p < 0.05). this implies that the more ukzn complies with the principles of udi, the better the learning experiences of swvds can be. the positive correlation revealed that udi compliance will allow for flexibility in instruction, thereby overcoming barriers and improving learning experiences in the classroom for swvds (heylighen 2014 and dutta 2013). current challenges in learning for students with visual disabilities in the classroom relating to the negative experiences mentioned above, this section described the current challenges experienced by swvds in the classroom. the majority of swvds were experiencing difficulty engaging with the lecturers, who do not understand, and have problems adapting to the course content and current support provided. furthermore, they were forced to learn like able-bodied students, lacked motivation, and found it difficult to engage with the lecture content because of a classroom climate that is not conducive to swvds (figure 3). black et al. (2014) agreed with heylighen (2014) that in order to increase access and the independence of swvds at university, the process was heavily reliant on accessible systems such as udi. this was because of the fact that udi provides a variety of instructional methods and learning techniques, as well as knowledge of how to properly include swvds through an understanding of how to provide appropriate accommodations, curriculum, and choices in instruction, in addition to traditional lectures, to create a more inclusive environment. figure 3: current challenges experienced by students with visual disabilities in the classroom. the inferential findings revealed an inverse relationship between compliance with udi and current challenges (–0.435*, p < 0.05). this implied that an increase in udi compliance will decrease challenges in the teaching and learning of swvds in the classroom. at present, figure 3 indicated a lack of udi compliance. hence the seven principles of udi are not being used to enhance classroom activities for swvds, nor is it used to make education more accessible. if udi is not effectively applied within the classroom, there can be no positive correlation or relationship and this will adversely impact on challenges that swvds experience in the current classroom environment. the rate at which the seven principles of universal design of instruction are being met in the classroom because of the current challenges and negative experiences listed earlier, it was clear that the seven principles of udi were not being met in the classroom at the university. this was further confirmed by students. the majority respondents indicated ‘somewhat to very little’ compliance for all principles (figure 4). hence, one can deduce that there was a lack of adaptable study materials, and the course design did not accommodate for the variety of needs of swvds and could not be used efficiently and effectively. this collectively indicates poor applicability of udi principles in the classroom for swvds, thereby creating a challenging learning environment. rahman (2019) and dutta (2013) concurred that there is no direct correlation between intelligence and visual impairment, and that swvds have the same range of intelligence and abilities as sighted students, except that they face additional barriers that may affect their learning. rahman (2019) argued that problems emerge because of limited opportunities and an education system that is not adapted to their needs. universal design of instruction strategies address these inequities by enhancing the quality of higher education by prioritising equity and the equitable participation of swvds in the classroom, as well as by exploring a new balance in teaching and curriculum development (majoko 2018; tomozii & topală 2014). figure 4: the rate at which the seven principles of universal design of instruction are being met in the classroom. there was a positive correlation between ukzn’s compliance with the principles of udi and current learning experiences in the classroom (0.447*, p < 0.05). this implied that the more ukzn complies with the principles of udi, the better the learning experiences of swvds can be. black et al. (2014) claimed that non-compliance with the udi principles was attributed to a lack of knowledge of how to properly include swvds through an understanding of how to provide appropriate accommodations, curriculum, class materials, and choices in instruction that create barriers to their education. compliance will allow for flexibility in instruction, overcoming barriers and improving learning experiences in the classroom that will aid in improving swvds’ learning experience and assist them to adapt to the different situations they may face at university. implementation of universal design of instruction to facilitate or maximise learning outcomes for students with visual disabilities in the classroom this section examined whether the implementation of udi will facilitate or maximise learning outcomes for swvds in the classroom. the majority of the respondents agreed that the implementation of udi will facilitate or maximise learning outcomes for swvds in the classroom (figure 5). respondents believed that they will be able to learn better in the classroom if the instructor created a class climate in which student diversity was respected. in addition, it would improve engagement with lecture content as udi will offer alternate formats in real-time, thus allowing swvds to work at their own pace independently. the udi does not require much effort to learn as udi-related assistive technology can facilitate communication and enhance learning in the classroom; offers alternate means to access learning needs in the classroom; and provides access to learning in living spaces appropriate to swvds’ individual needs as it adequately accommodates them according to their abilities (schiemer 2017). figure 5: universal design of instruction implementation and learning outcomes. there was a significant positive correlation between the implementation of udi versus facilitates or maximises learning outcomes for swvds. this revealed that the implementation of udi in the classroom can result in maximised learning outcomes for swvds (0.537*, p < 0.05). munene (2017) confirmed that the implementation of udi can be constructively used as a driving mechanism to uphold institutional values and contribute to combating the challenges that swvds face, thereby maximising learning outcomes. hence, it is evident that the implementation of udi is an appropriate strategy to be applied at the university to ensure that teaching styles, instructional materials, and educational goals are designed and modified to fit the student’s specific learning needs and enhance their visual learning experience (salleh & zainal 2010 and rahman 2019). factors to be considered for the implementation of universal design of instruction to promote inclusive learning for students with visual disabilities in the classroom for udi to be implementable in the classroom, it would be dependent on a variety of factors, as supported by respondents (figure 6). figure 6: factors that must be considered for the implementation of universal design of instruction. several important factors emerged through the study’s findings in conjunction with four highly ranked udi principles (equitable use, flexibility in use, size and space for approach, and tolerance for error). figure 6 showed how students rated important factors to be taken into consideration for the implementation of udi at the university. firstly, an institutional understanding of udi was pertinent. secondly, engagement with swvds to assess needs was significant to maximise learning outcomes and create a university-wide awareness that included all stakeholders. the majority were in favour of re-designing lecture rooms and re-evaluating courses in consideration of udi principles, as the flexibility of a design such as udi would enable swvds to participate in activities promoting interaction among students and instructors. in applying udi principles, one needs to be cognisant of the diversity of human abilities and conditions and choose the most appropriate design within the context of the classroom (heylighen 2014). in line with udi, these factors offer a simplified design for easier access to teaching and learning methods and ensure an adequate and appropriate workspace for students who may require specific arrangements within the classroom. hewett et al. (2018) expressed that the university needed to transform entrenched attitudes of traditional he systems and evolve by embracing a new educational perspective such as udi, which required a period of learning and knowledge acquisition by all stakeholders. results further indicated that there is a positive correlation between factors to be considered for the implementation of udi and implementation of udi facilitates or maximises learning outcomes (0.475*, p < 0.05). it was evident that factors considered for the implementation of udi to promote inclusive learning will facilitate or maximise learning outcomes for swvds in the classroom. factors may include the need for space to facilitate orientation and mobility, lighting, access to technology, and online access for students who are blind and partially sighted. to ensure that swvds will have opportunities to learn, participate and express what they know on an equal level as other students, udi is an appropriate strategy to be applied at the university (rahman 2019). sen’s capability approach in line with the social model of disability, sen’s capability approach provided favourable grounds for the implementation of udi, showing significantly higher levels of agreement graphically (figure 7). figure 7: applicable constructs of sen’s capability approach. based on the above statistical outcome, sen’s capability approach is a highly applicable model for the implementation of udi. the majority of students agreed that the application of udi in the classroom can maximise learning outcome for swvds and enable all stakeholders to work collaboratively in a system within the classroom, promoting shared responsibility through social interaction of swvds, lecturers, and other students and participation of swvds in all aspects of learning in the classroom. enhanced capabilities make people autonomous and autonomy leads to possibilities to achieve well-being, quality of life, equity, and equal opportunities for all people (schiemer 2017). figure 7 reflected a high level of agreement by swvds that enhanced capabilities increased autonomy in learning. the capability approach focuses on ensuring equality and developing human potential. this is aligned with the principles of udi to enhance the capabilities of swvds, thereby reducing the consequences of disability and increasing opportunities for swvds to satisfy their basic need for quality education (broderick 2018; dubois & trani 2009). results revealed a strong positive correlation between applying udi to enhance academic capabilities and the implementation of udi in the classroom (0.652**, p < 0.05). this indicates that applying udi in the classroom will enhance the academic capabilities of swvds. students with visual disabilities have existing capabilities that can be enhanced provided that the circumstances or the university environment enables swvds to use those capabilities to enhance their functions or actions. the implementation of udi encourages innovative teaching styles, instructional materials, and educational goals designed and modified to meet the needs of swvds. on the contrary, restrictions and limitations of functioning in the classroom that are not compensated for by adaptation of course materials and teaching strategies exacerbate their situation in a mainstream classroom (dubois & trani 2009). the results also indicated that the application of udi will enhance capabilities which will in turn foster good relationships within the classroom (0.646**, p < 0.05). the majority of participants agreed that udi will enhance capabilities in the classroom through collaborative and reciprocal relationships (give-and-take actions) with the disability coordinator, lecturer, other students, and all relevant stakeholders. godden and hsy (2015) agreed that the implementation of udi is necessary to merge swvds into the classroom with able-bodied students, encouraging mutually beneficial relationships. this can further enhance learning capabilities of swvds. conclusion this paper aimed to examine the potential of the udi in the classroom within a higher education setting to promote equal access for swvds in the classroom and facilitate or maximise learning outcomes. in relation to these findings, the study conveyed the potential for inclusive educational practices through the udi, which can alleviate access challenges in the classroom and address the negative experiences thereof for swvds. both descriptive and inferential findings support the need for the implementation of the udi in the classroom. correlations further imply that the increase in the use of the udi can have a directly proportional relationship towards enhancing and maximising learning outcomes for swvds. therefore, re-conceptualising current teaching and learning practices in line with udi principles is highly recommended. furthermore, a move towards udi will support sen’s capability model, which is in line with the social model of disability. acknowledgements this article is partially based on the author’s, j.s., thesis entitled “promoting inclusive learning through universal design of instruction (udi): exploring the potential of udi to enhance learning for students with visual disabilities in the classroom” towards the degree of doctor of education in the school of education, college of humanities, university of kwazulu-natal, south africa in 2022, with supervisor sachin suknunan. it is available here: https://researchspace.ukzn.ac.za/handle/10413/22339. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.s. developed the theoretical formalism, performed the analytic calculations, and performed the numerical simulations. the study was supervised by s.s. both j.s. and s.s. contributed to the final version of the manuscript. funding information the authors received no financial support 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to: anthea rhoda postal address: private bag x17, bellville 7535, south africa dates: received: 31 mar. 2014 accepted: 04 aug. 2014 published: 21 nov. 2014 how to cite this article: rhoda, a.j., 2014, ‘health-related quality of life of patients six months poststroke living in the western cape, south africa’, african journal of disability 3(1), art. #126, 6 pages. http://dx.doi.org/10.4102/ ajod.v3i1.126 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. health-related quality of life of patients six months poststroke living in the western cape, south africa in this original research... open access • abstract • background    • quality of life of stroke survivors    • materials and methods    • data collection instruments    • data analysis       • ethical considerations • results    • sociodemographic status of the participants    • functional levels of the participants at six months poststroke    • quality of life domains • discussion    • limitations • conclusion • acknowledgements    • competing interests • references abstract top ↑ background: the majority of individuals report a decline in health-related quality of life following a stroke. quality of life and factors predicting quality of life could differ in individuals from lower income countries. the aim of this study was therefore to determine the quality of life and factors influencing quality of life of community-dwelling stroke patients living in low-income, peri-urban areas in the western cape, south africa.method: an observational, longitudinal study was used to collect data from a conveniently selected sample of first-ever stroke patients. the rivermead motor assessment scale and the barthel index were used to determine functional outcome and the eq-5d was used to collect information relating to quality of life at two months and six months poststroke. descriptive and inferential statistics were used to analyse the data. results: the total sample of 100 participants consisted of 50% men and 50% women with a mean age of 61 and a standard deviation of 10.55 years. six-month quality of life data was analysed for 73 of the 100 participants. of the 27 who were lost to follow-up, nine participants died, four withdrew from the study after baseline data was collected and eleven could not be followed up as they had either moved or no follow-up telephone numbers were available. a further three participants were excluded from the analysis of the eq-5d as they were aphasic. of these, approximately 35% had problems with mobility and self-care, whilst 42% had severe problems with everyday activities and 37.8% expressed having anxiety and depression. quality of life at two months (p = 0.010) and urinary incontinence (p = 0.002) were significant predictors of quality of life at six months. conclusion: health-related quality of life was decreased in the south african stroke sample. functional ability and urinary incontinence were the factors affecting quality of life in the sample. these factors should be considered in the rehabilitation of stroke patients in these settings. background top ↑ stroke is an undisputed major cause of death and disability (kingley 2011). south african statistics indicate that 60% of stroke survivors are disabled and need assistance with the activities of daily living (southern african stroke prevention initiative project team 2004). this places a major burden on families and communities in south africa. patients with stroke may well experience a range of impairments that could impact on physical and psychological functioning, detract from the person’s ability to participate in work and leisure activities, as well as decreasing their quality of life (world health organization [who] 2001). there is evidence to suggest that patients in the acute stage who are treated in stroke units have better outcomes (stroke unit trialists’ collaboration 2007). this is not always possible in developing countries like south africa, due to a lack of resources (kengne & anderson 2006); for example, in developing countries, stroke patients are often referred for rehabilitation to primary level outpatient facilities that might not always be the most appropriate settings. the outcomes of stroke, including the quality of life of the individuals, could therefore be nonoptimal due to this lack of access to services. quality of life of stroke survivors the majority of individuals report a decline in health-related quality of life following a stroke (hacket et al. 2000; abubakar & isezuo 2012; visser-meily et al. 2009). health-related quality of life is seen as a broad multidimensional construct which includes physical, functional, psychological and social health (who 1995). it has been found that all of the above-mentioned dimensions are affected in individuals poststroke (owolabi 2011), with the emotional and social domains being more affected in certain groups (visser-meily et al. 2009).physical health refers to impairments as a result of the stroke which include motor, speech and sensory difficulties, whilst functional health includes the ability to conduct activities of daily living, mobility and maintain previous life roles. the psychological domain includes the cognitive and emotional challenges experienced by stroke patients. social support by family and others are included in the social domain (king 1996). in order to fully understand the quality of life of stroke patients, each of these domains needs to be assessed. a number of factors have been identified which determine the health-related quality of life of individuals after a stroke. depression and functional status have been repeatedly found to be factors that predict quality of life in stroke survivors (abubakar & isezuo 2012; carod-artal et al. 2000; howitt et al. 2011; raju, sarma & pandian 2010). stroke severity has also been identified as a factor affecting the quality of life of stroke survivors (owolabi 2010). perceived social support (carod-artal et al. 2000) and level of income (delcourt et al. 2011) have been less frequently reported as factors that could predict quality of life in these individuals. data relating to the quality of life in patients with stroke are limited in less resourced countries such as south africa. as a result of the difference in socioeconomic statuses, differences could be present in the quality of life domains in stroke patients from this low-income country. it has been reported in a south african study that people living in low socioeconomic communities, considered the environmental domain as the most important domain for quality of life (jelsma, mkoka & amosun 2008). aspects that affected quality of life included access to medical services, owning a brick home (with water, electricity and sanitation) and having sufficient food. the same authors also reported that socioeconomic factors such as income and unemployment were factors that predicted visual analogue scale (vas) scores as measured by the eq-5d. it should be noted that there are many other factors that could impact on the quality of life of individuals poststroke. these include factors relating to the stroke such as the severity, cause and side of the lesion in the brain. in addition, personal factors such as the ability of the individual to communicate effectively with others could also impact on their quality of life. other factors which could impact on the quality of life of individuals poststroke include the use of mobility assistive devices, adaptations made to the physical home environment and input provided by organisations that support individuals and families. however, these factors were not addressed in the current study. the majority of patients with stroke living in south africa come from low-income, poorly resourced areas (rhoda 2012; rouillard et al. 2012) and have limited access to rehabilitation interventions (kenge & anderson 2006; rhoda, mpofu & de weerdt 2011). it is not known whether the quality of life domains identified by these stroke patients are similar to those identified in previous populations of stroke patients from developed countries or whether they are similar to those of the general population living in the same environment. the aim of this study was therefore to determine the quality of life and factors influencing quality of life of community-dwelling stroke patients living in low-income peri-urban areas in the western cape, south africa. this information is important for planning of appropriate, effective rehabilitation services in countries where services for these patients are already limited. materials and methods this study formed part of a larger study that assessed stroke rehabilitation at community health centres (chcs). in this research, a longitudinal, observational study design was used to collect the data from a conveniently selected sample of first-ever stroke patients. data was collected at baseline, two and six-month poststroke intervals.the study was conducted at state-subsidised chcs in peri-urban, low-income to middle-income communities in the western cape. community health centres are outpatient facilities that offer comprehensive primary healthcare services, which include rehabilitative services. the rehabilitative services include physiotherapy and occupational therapy services on a part-time basis and speech therapy offered by students at only one of the centres. all patients who were consecutively admitted to the centres for therapy and those who met specific inclusion criteria were included in the main study. the inclusion criteria were patients who had experienced a first-ever stroke as defined by who (1989), were not more than six weeks poststroke, those who had rivermead motor assessment (rma) scores of: gross function (rma-g) ≤ 11; and/or leg and trunk function (rma-lt) ≤ 8; and/or arm function (rma-a) ≤ 12, between < 35 and > 85 years of age. patients who had suffered a previous stroke would be excluded as they could have impairments as a result of the previous stroke. patients were excluded if they had other neurological impairments with permanent damage, such as previous head injuries or spinal cord injuries, if they had stroke-like symptoms due to subdural haematoma, a brain tumour, encephalitis or trauma, if their stroke had occurred more than six weeks before, a prestroke barthel index score of < 50, and if no informed consent had been obtained from the patient or family. patients who had suffered a previous stroke were excluded as they could have impairments as a result of the previous stroke which could have impacted on their quality of life and other outcomes. before the study commenced, the necessary ethical clearance and permission were obtained. to inform the therapists working at the chcs about the study, the researcher attended one of the monthly meetings of the chc therapists at which the researcher presented the study proposal and highlighted the aims, objectives and significance of the study, as well as the ethical considerations that would be adhered to during the implementation of the study. the therapists were informed that they would be contacted on a weekly basis to enquire about new patients with stroke who had suffered a first-ever stroke and who had suffered their stroke not more than six weeks ago. once the names and contact details of eligible patients were obtained, they were contacted and an appointment was set up. in cases where telephone numbers were not available, the researcher or research assistants went to the patient’s home. the aim of the study was explained to the patient and, in some cases, to the patient’s family or caregiver. the patients were invited to participate in the study and were asked to give written informed consent. in cases where the patient was not able to give written informed consent, a family member was approached. where written informed consent was obtained, the patients were assessed to see whether they met the inclusion criteria. if the patient was eligible to be included in the study, the necessary baseline questionnaires were completed by the researcher or the research assistant, mostly in the participants’ homes or at the therapy departments at the chcs. once the researcher had finished collecting the baseline data, the participants were informed that they would be contacted for an appointment for the two-month and six-month follow-up assessments. these assessments were within a window period of seven working days either before or after the actual two-month or six-month poststroke date. quality of life data was collected from the participants who were able to verbally provide responses. data collection instruments data was collected by using a demographic questionnaire, the eq-5d for quality of life, the rivermead motor assessment scale (rma scale) and the barthel index. questionnaires for each participant were completed by the same researcher. the eq-5d is a generic index instrument that focuses on a set of health-related quality of life items to provide a broad assessment. it is a self-administered tool made up of two parts. the first part is designed to obtain an indication of the level of difficulty experienced in mobility, self-care and usual activities. the instrument also assesses the presence and severity of pain and discomfort, as well as anxiety and depression. the second part assesses the individual’s perception of their current health status using a vas where 0 indicates the worst imaginable health state and 100 the best possible health state (dorman et al. 1998). good intra-observer agreement (k > 0.60) was measured with the use of the eq-5d in all dimensions measured (pinto et al. 2011). the scale has been used to determine the quality of life of patients in a number of studies that were conducted in south africa to determine quality of life in patients living with hiv and/or aids (hughes et al. 2004), as well as in a local cape town community with diverse inhabitants (jelsma & ferguson 2004).the rma was used to measure motor performance of the participants (finch et al. 2002). the instrument consists of three subscales that measure gross motor function, leg and trunk impairment, as well as arm impairment. the scale is completed by direct observation. the observed activity is scored either as the patient’s ability to do the activity with a score = 1, or the patient’s inability to perform the activity, score = 0. the higher the final score for each subsection, the higher the level of functioning. finch et al. (2002) reported that the rma is a reliable and valid tool based on good to excellent psychometric properties; for example, excellent scalability coefficients reporting coefficients of scalability (cs), values of gross motor section (r = 0.91), leg and trunk section (r = 0.81), and arm section (r = 0.96). the inter-rater reliability of the scale has also been recorded as being good (lincoln & leadbitter 1979). a positive or negative difference of three points of the total on the scale indicates a clinically significant difference. the barthel index was used to determine the level of independence in the basic activities of daily living (mahoney & barthel 1965). the barthel index consists of 10 items including basic mobility, self-care activities and an assessment of bladder and bowel continence. the items are measured on a graded scale from independence to dependence. the scores range from 0 to 100 with each item being assigned a score of 0, 5, 10 or 15. the barthel index can be completed by self-report or by direct observation. an excellent test-retest reliability coefficient r = 0.98 has been found for this tool. shah, cooper and maas (1992) reported high correlations between the barthel index and the kenny self-care evaluation (r = 0.73). the barthel index has been widely used in a number of studies relating to stroke rehabilitation research both internationally (de wit et al. 2007) and locally (rouillard et al. 2012). data analysis descriptive statistics were used to analyse the data, which was captured and analysed using the statistical package for social sciences (version 17). descriptive frequencies were presented for different quality of life domains. the means and standard deviations were determined for the demographic variables, rma, barthel index and eq-5d data. multiple regression analysis was used to determine the factors predicting quality of life at the six-month poststroke interval as determined by the vas of the eq-5d. a model was fitted with variables which were found to be significant on univariate analysis (p < 0.05). the omnibus test using the enter method was used to determine interaction of the variables. variables that became non-significant were excluded from the model. ethical considerations a total of 100 participants were recruited into the study over an 18-month period. of these, 12 were lost to follow-up at two months, and an additional 12 at the six-month assessment period. of those who were lost to follow-up, nine participants died, four withdrew from the study after baseline data was collected and 11 could not be followed up as they had either moved or no follow-up telephone numbers were available. no significant differences existed between the participants who dropped out of the study and those who remained in the study (see table 1). a further three participants were not included in the data analysis of the eq-5d as they were aphasic. the median time to stroke onset was 21 days (q1; q3 15 days – 31 days). table 1: mean comparison tests between drop out and nondrop out groups. results top ↑ a total of 100 participants were recruited into the study over an 18-month period. of these, 12 were lost to follow-up at two months, and an additional 12 at the six-month assessment period. of those who were lost to follow-up, nine participants died, four withdrew from the study after baseline data was collected and 11 could not be followed up as they had either moved or no follow-up telephone numbers were available. no significant differences existed between the participants who dropped out of the study and those who remained in the study (see table 1). a further three participants were not included in the data analysis of the eq-5d as they were aphasic. the median time to stroke onset was 21 days (q1; q3 15 days – 31 days). sociodemographic status of the participants the study sample consisted of an equal number of men (50) and women (50). the mean age of the population was 61.0 with a standard deviation (sd) of 10.55 and ages ranged from 36 years to 85 years. a large percentage of the group had a primary school or lower level of education. in addition, a large percentage was unemployed with the majority earning a household income of ≤ r1000.00 per month. functional levels of the participants at six months poststroke out of a total score of 100, the participants had a mean barthel index score of 78.6 (sd 23.7) meaning that most were independent in conducting activities of daily living. the means scores for the rma subscales were as follows:• for gross motor function, out of a total of 13 the mean score was 9.09 (sd 3.3) • for lower limb motor function, out of a total of 10 the mean score was 6.66 (sd 2.60) • for the upper limb motor function, the mean score was 7.53 (sd 4.91) out of a total score of 15. the results indicate that the participants had better function with regard to gross motor and lower limb function than with upper limb function. quality of life domains the health-related quality of life of the participants was determined using the eq-5d. activities are scored according to a range, from participants having no problem with the activity to participants having a severe problem with performing the activity. the domains of quality of life presented are functional (which includes mobility, activities of daily living and usual activities), physical (which includes pain and discomfort) as well as psychological (which includes anxiety and depression). the results for these domains are illustrated in table 2. factors predicting the eq-5d at six months poststroke are presented in table 3. table 2: eq-5d results at six months poststroke (n = 73). table 3: regression coefficients for factors predicting eq-5d vas scores at six months poststroke. discussion top ↑ the aim of the current study was to present the quality of life of individuals with strokes who live in community dwellings. the aspect that was most severely affected in the study was usual activities, which is part of the functional domain of the participants as estimated by the eq-5d. quality of life outcomes are best interpreted when compared to a sample of individuals from a similar geographical setting, that is, a sample of nonstroke individuals living in a similar geographical setting. to this end, the findings of the present study were compared to those of previous studies (hughes et al. 2004; jelsma & ferguson 2004) conducted in the western cape using the same instrument. a larger percentage of participants in the present study (79.5%) experienced difficulty in the domain of usual activities compared with the nonstroke community samples (less than 20%) (jelsma & ferguson 2004). a lower percentage (31.7%) of participants living with hiv and/or aids in the western cape reported having problems with usual activity. this means that stroke patients are experiencing greater challenges in usual activities than those from a similar sample in the community who had not experienced a stroke. it should however be noted that the stroke population was much older than both the community sample mean 50 (sd 17.8) and the sample who had hiv and/or aids mean 33.8 (sd 7.8). even though the stroke patients are older, which could result in a decreased ability to perform usual activities, a similar decreased ability was also reported in a study conducted in a stroke sample in canada (pickard et al. 2004). it is therefore clear that a stroke impacts on the ability of individuals to continue doing the activities they had previously been doing, which also highlights the role changes that often occur as a result of a stroke (dowswell et al. 2000). the outcome of this study revealed that usual activity was the category most affected, as measured by the eq-5d. in the qualitative study conducted at by rhoda (2012) in south africa, the majority (61%) of the stroke patients also experienced problems conducting their usual activities. the usual activity domain includes activities such as work and caring for families. this result further supports the finding that the participants had problems with activities that were more difficult to perform than basic activities of daily living and which extended beyond the home environment. these activities could also be classified as part of the participation domain of the international classification of functioning disability and health (icf), which is a challenge to patients who have had a stroke (who 2001). the results obtained for the mobility construct of the functional domain, using the eq-5d, correlated well with the functional ability of the participants as determined by the barthel index. the mean barthel score of approximately 79 indicated that most of the participants were able to perform their basic activities of daily living independently (finch et al. 2002). pain and discomfort was experienced by a greater number of participants with stroke (49.7%) than the similar community (40.2%) but less than those living with hiv and/or aids (80.6%). a larger number of participants in the current study also reported having pain when compared to a stroke sample in the united kingdom. although pain has not been identified as a symptom impacting on quality of life, shoulder pain is a common occurrence in patients with stroke which impacts on the functional ability of these individuals (benlidayi & basaran 2013). thirty-eight percent of participants reported having problems with anxiety and depression, which was similar to the percentage reported in the woodstock community project (36.4%), and to the hiv sample (31.7%) which was part of the study conducted by hughes et al. (2004). the result for the woodstock community was high and could be attributed to the high stress levels that may be reported by people from lower socioeconomic parts of the community. these results could suggest that stroke patients living in low-income settings in the western cape were not experiencing more anxiety and depression than the general population or those living with hiv and/or aids. depressive symptoms in individuals with stroke should, however, be managed as they impact negatively on functional ability and recovery following a stroke, especially as pharmacological treatment has been found to be effective (gainotti & marra 2002). anxiety and depression have also previously been reported to be related to decreased quality of life in the netherlands (visser-meily et al. 2009) and an independent predictor of quality of life in a nigerian stroke sample (abubakar & isezuo 2012; gibri & akinpelu 2012). greater anxiety and depression is significantly correlated with lower physical and psychological health-related quality of life domains in tanzanian stroke survivors (howitt et al. 2011.). when measured using the anxiety and depression scales, jones et al. (2012) also reported higher levels of depression than what was reported elsewhere. activities such as gross motor function and functional activity of the lower limb as measured by the rma as well as impairments such as urinary incontinent and aphasia were factors that significantly predicted the quality of life two months after a stroke. urinary incontinence has been identified as a long-term problem following a stroke (patel et al. 2001), which needs to be addressed in rehabilitation of stroke patients. functional ability, which is encompassed in the rma and eq-5d, is a factor which clearly predicts quality of life in the sample even at the six-month interval. this finding concurs with findings of local, african and international studies (abubakar & isezuo 2012; delcourt et al. 2011; howitt et al. 2011; raju et al. 2010). the focus of rehabilitation of patients with stroke should therefore be to improve functional ability in order to improve quality of life of these individuals. limitations the large number of patients that were lost to follow-up is a limitation of this study. a larger sample size would have allowed an increased number of variables to be included in the regression analysis. conclusion top ↑ it can therefore be concluded that patients experienced a challenge in the domain of quality of life specifically relating to the ability to perform their usual activities, which relates to the functional domain of quality of life. these activities include returning to work and engaging in social activities which are the activities needed for re-integration into the community and society. in addition, factors that predict quality of life in the stroke population studied were similar to those of stroke patients from developed countries. acknowledgements top ↑ the author hereby wishes to acknowledge the university of the western cape research fund for providing financial assistance for the study and dr marion smith for assisting with statistical analysis. the 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conclusion acknowledgements references about the author(s) lebogang j. maseko department of occupational therapy, school of therapeutic sciences, faculty of health sciences, university of the witwatersrand, johannesburg, south africa fasloen adams department of health and rehabilitation sciences, division of occupational therapy, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa hellen myezwa department of physiotherapy, school of therapeutic sciences, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation maseko, l.j., adams, f. & myezwa, h., 2024, ‘primary healthcare rehabilitation users’ views on activity limitations and participation in south africa’, african journal of disability 13(0), a1391. https://doi.org/10.4102/ajod.v13i0.1391 original research primary healthcare rehabilitation users’ views on activity limitations and participation in south africa lebogang j. maseko, fasloen adams, hellen myezwa received: 12 dec. 2023; accepted: 22 may 2024; published: 21 oct. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: increasing functional limitations and disabilities have raised the need for comprehensive rehabilitation services at the primary healthcare (phc) level, particularly in lowand middle-income countries. to support the integration of these services into phc in south africa, assessing outcomes from the service users’ perspectives is essential. objectives: this study examined service users’ views on their phc rehabilitation outcomes in a metropolitan district of gauteng, south africa. the aim was to understand perceived changes in activity limitations and participation restrictions following the rehabilitation intervention. method: a quantitative survey design, including self-rating measurements and structured interviews, was employed. thirty-eight rehabilitation service users from eight clinics and community health centres were purposively sampled. participants rated their preand post-rehabilitation levels of difficulty in activity limitations and participation restrictions, with open-ended questions providing additional insights. data analysis used descriptive statistics, quantitative content analysis, and non-parametric tests. results: significant improvements in mobility, self-perception, and quality of life were reported by both adult and child service users. caregivers of child service users also noted positive experiences (p = 0.019) in community, social, and civic life. conclusion: this study highlights the perceived positive changes experienced by phc rehabilitation service users in addressing functional limitations and disabilities. it underscores the effectiveness of integrated rehabilitation service delivery in improving user outcomes. contribution: the findings offer valuable insights into how rehabilitation interventions enhance functional abilities, social participation, and overall well-being. by focusing on activity limitations and participation restrictions from service users’ perspectives, this study supports the priority of providing person-centred rehabilitation services at the phc level. keywords: rehabilitation service users; person-centred approach; integrated rehabilitation services, rehabilitation outcomes; primary healthcare; functional limitations; occupational therapy; physiotherapy, speech and language therapy; audiology. introduction the global increase in non-communicable diseases, neurological disorders, and traumatic injuries has led to a rise in functional limitations and disabilities, particularly in low and middle-income countries such as south africa. consequently, there is a growing demand for comprehensive rehabilitation services (stucki et al. 2017; world health organization 2019) to address this need. the who and the united nations children’s fund (2018) advocate for the provision of rehabilitation services at the primary healthcare (phc) level for individuals of all ages using a whole-society approach to address the determinants of health, and by bringing services closer to communities. however, despite the known importance of rehabilitation services, their integration at the phc level has been hindered globally by a lack of recognition by policy makers and service planners (joint learning network 2023). one potential reason for this limited integration may be the lack of consideration of rehabilitation in health systems planning and an insufficient understanding of the benefits of rehabilitation outcomes on health, disability and quality of life (qol) as defined by the who (2002). contrary to the medical model that underpins most health systems and focuses primarily on body structures and functions, rehabilitation adopts a biopsychosocial spiritual approach to health as defined in the international classification of functioning, disability and health (icf). this approach considers activity limitations, and participation restrictions as well as personal and environmental factors (stucki & höök 2016; who 2002). rehabilitation services aim to enhance not only physical and mental functioning but also to support the purposeful engagement in daily life, including the domains of self-care, communication, social, leisure, work and/or education (who 2019). therefore, it is important to establish the outcomes of rehabilitation services, based on the icf, determined by the individuals’ capacity or intrinsic ability to carry out actions in everyday activities across various domains in their physical, cultural, social, and economic environments (huus et al. 2021; stucki & höök 2016). the outcomes are further quantified through measures of qol and well-being (donnelly et al. 2023). it is essential to provide evidence of these outcomes to enhance the understanding and promotion of the integration of rehabilitation services in phc. to provide the best value to their users, health systems must first understand what is important to patients and carers, how to capture this information, and most importantly, how to use this information to improve the quality of care provided by healthcare systems (cadel et al. 2022). the south african health system shows apathy in integrating rehabilitation service delivery into their implementation of a re-engineered phc, a strategy aimed at achieving universal health coverage in preparation for the national health insurance (nhi) (louw et al. 2023). this is despite advocacy for the integration of rehabilitation into standard treatment guidelines for phc being in the framework and strategy for disability and rehabilitation services in south africa (fsdrsa) (national department of health 2015). the proposed phc multidisciplinary teams for the nhi primarily include nurses, community health workers, and doctors (mash et al. 2020), with limited mention of rehabilitation services. consequently, individuals with functional limitations and disabilities, or those at risk of disability could face limited access to rehabilitation services at the phc level in the proposed nhi, a single healthcare system financed by the government (morris et al. 2021). to support the integration of rehabilitation into phc, it is essential to provide evidence on the effectiveness of phc rehabilitation services delivered by interprofessional teams comprising personnel from physiotherapy, occupational therapy, speech and language therapy, and audiology, among others (who 2019). such evidence should support specific person-centred rehabilitation interventions delivered by rehabilitation professionals, which incorporate goal-setting to address impairments and compensate for disability, and provide environmental assessment, adaptation, as well as the prescription of specialised equipment (brown et al. 2021). the evidence should emphasise the inclusion of client experiences in the evaluation of services aimed at restoring, reclaiming, or maintaining function (meyer et al. 2014). measuring patient experience provides a more comprehensive picture of healthcare quality and can highlight areas for improvement (cadel et al. 2022). patient experience encompasses the range of interactions patients have with the healthcare system, which may include several aspects of care delivery such as patient-provider communication and appointment wait times, to name a few. additionally, emphasising community participation and health outcome evaluation are vital for providing clinical evidence, particularly in sub-saharan africa (mash et al. 2020). literature on the effectiveness of phc-level rehabilitation often focuses on specific diagnostic groups treated by a single rehabilitation discipline in high-income countries (gell, mroz & patel 2017). consequently, there is limited evidence regarding the effectiveness of such services on activity limitations and participation restrictions (abdel-malek, rosenbaum & gorter 2020). notable improvements in social activity, work productivity, and reduced healthcare admissions have only been reported following interdisciplinary phc rehabilitation interventions for chronic pain (stein & miclescu 2013). in profession-specific publications in sweden (matérne et al. 2022) and nigeria, physiotherapy interventions at the phc level for elderly clients and stroke survivors show positive changes in mobility, health-related qol, and reintegration into daily life (olaleye, hamzat & owolabi 2014). occupational therapy services in phc show promising results in countries such as sweden, the netherlands, and the usa. studies from these countries report improved occupational performance, return to work, and enhanced qol for individuals with conditions such as depression, stress-related ill-health, dementia, frailty, and parkinson’s disease (de coninck et al. 2017; eklund, erlandsson & wästberg 2015; erlandsson 2013; kjerstad & tuntland 2016; sturkenboom et al. 2014). donnelly et al. (2023) also report improved participation in work, and functional and community mobility, including driving and engaging in social activities for adults of various ages. in the netherlands, an online programme supporting adults with attention deficit hyperactivity disorder and autism has been successful in improving instrumental activities of daily living (bolt et al. 2019a). research on outcomes in paediatric phc rehabilitation services traditionally focuses on body functioning, but there is evidence of positive effects on activity limitations and participation restriction (tveten et al. 2020). although somewhat outdated, physiotherapy research indicates improvements in mobility and functional ability in children with cerebral palsy (smetana 2012). similarly, occupational therapy interventions for children with cerebral palsy show enhancements in occupational performance, self-care, play, and education, as assessed by caregivers (imms et al. 2010; kolit & ekici 2023) telehealth in paediatric phc occupational therapy also demonstrates benefits in communication, school participation, and self-care for daily activities (önal et al. 2021). however, no recent research reporting improvements in activity limitation and participation restrictions through speech and language therapy or audiology in phc was found, indicative of the shortage of these services at the primary level. despite the available literature, the evidence on the effectiveness of phc-level rehabilitation services remains inadequate, particularly for functional outcomes related to activity limitations and participation restrictions based on the icf framework. there is a significant gap in understanding the activity limitation and participation restriction changes experienced by phc rehabilitation service users, particularly in lowand middle-income countries. this study aimed to address this gap by exploring the change in activity limitations and participation restriction outcomes of phc rehabilitation services at eight phc clinics funded by the provincial health department in a metropolitan district in gauteng, south africa. research methods and design study design the study used a quantitative survey design with a subjective, self-rating measurement accompanied by open-ended questions where data were collected during structured interviews. the inclusion of open-ended questions allowed participants to provide qualitative insights into the changes experienced in activity limitations and participation restrictions (zhao & kwok 1999). study setting the study was conducted in a metropolitan health district in gauteng, south africa, which comprises 125 phc clinics and community health centres across seven regions (massyn et al. 2020). the facilities provide services to over 100 000 people (gauteng province co-operative governance and traditional affairs 2021). of these facilities, only nine offer rehabilitation services, including physiotherapy (22 staff members), occupational therapy (20 staff members), speech and language therapy (4 staff members), and audiology (2 staff members) (jhb metro rehab 2023). at the time of the study, one of the nine clinics had diverted their rehabilitation services to another clinic, thus only eight facilities were available for the study. study population and sampling strategy rehabilitation service users attending the clinics and community health centres in a metropolitan district that offer rehabilitation services were recruited for the study. purposive sampling was used at eight of nine provincial clinics and community health centres, where 80 rehabilitation service users, who met the inclusion criteria of receiving regular weekly or monthly services and being able to speak and understand english, were identified. those who attended fewer than three rehabilitation sessions were excluded to ensure participants had an adequate experience of rehabilitation services when reporting outcomes (maseko, myezwa & adams 2024). considering a 10% margin of error, as recommended by cochran’s formula for ordinal data, based on the 80 potential participants identified, 38 participants were included in the study (oribhabor & anyanwu 2020). the study collected data on the perceived outcomes for both adult and child service users from adults or their caregivers. these caregivers were either parents, legal guardians, or family members who provided the necessary care to adult service users. adults or the caregivers of children, most of whom were too young for interviews, reported on the changes in activity limitations and participation restrictions before and after rehabilitation. additionally, caregivers, with consent from adult service users with communication disorders, assisted or facilitated their participation in the interviews using strategies implemented in rehabilitation sessions. data were collected over a 4-month period between march and june 2021. the eight research assistants, who were rehabilitation professionals, conducted the interviews. they were trained by the principal researcher on the data collection process and had no prior knowledge of the participants or the treatment they received. data collection a researcher-developed survey, administered by research assistants in a structured interview, was used to gather data. the survey included structured interview questions with open-ended prompts that aimed to provide additional details about participants’ experiences or their caregivers’ observations of changes from preto post-rehabilitation. interviews were conducted in english and the interviewer and/or adult caregiver assisted participants when required. to ensure content validity, three rehabilitation professionals, one occupational therapist, one physiotherapist, and one speech and language therapist and audiologist with a dual qualification recognised as experts with over 30 years’ experience in public and private health systems in the field of rehabilitation, reviewed the survey questions. they assessed each question for relevance, clarity, ambiguity, and simplicity, rating them on a scale from 1 to 4 (polit & beck 2006). the final survey incorporated all relevant suggestions from their feedback. the survey consisted of three sections. section 1 included sociodemographic questions, medical history, and clinic visit information. section 2 consisted of 12 basic self-rated items aligned with the icf classification to assess difficulties in daily activities, mobility, employment, and schooling (zhao & kwok 1999). in section 2, participants were asked to rate their preand post-rehabilitation performance as independent with full participation, independent with some help, or limited participation verbally in reply to the questions. answers provided in this section were confirmed in open-ended structured interview questions, and patients were also asked to describe their own or their child’s feelings about themselves and their qol to gather more detailed information about changes experienced during rehabilitation. section 3 of the survey included questions that asked participants to rate their self-perception, including their physical, mental, or social attributes, and quality of life (qol) as ‘good,’ ‘neither good nor bad,’ or ‘bad’. this approach is based on the integrative theory of qol, as suggested by lindholt, ventegodt, and henneberg (2002), which considers both objective and subjective components. eight research assistants who were rehabilitation professionals employed at the clinics received training from the principal researcher in the survey administration and structured interview procedures. the rehabilitation professionals at the community health centres and clinics identified 80 eligible service users not previously treated by them, of which 38 were included in the study. participants were provided with an information sheet, which was explained, and the information discussed with them where necessary. written informed consent for study participation and audio recording was obtained from all adult participants and caregivers of the children. interviews were conducted with adult service users, assisted by caregivers where necessary, or with caregivers of child service users, to discuss changes in their own or their child’s activity limitations and participation restrictions before and after rehabilitation. these interviews occurred in a quiet room within the clinic and were audio recorded using a tablet. interview recordings were anonymised and transcribed verbatim. data analysis demographic data, participants’ self-rated levels of independence in different domains of activity limitation and participation restrictions before and after rehabilitation, feelings about oneself, and qol were analysed descriptively using frequencies based on the survey responses. perceived changes in activity limitations and participation restrictions before and after rehabilitation were analysed using a chi-squared test (sig 0.05) as a non-parametric statistical method. the qualitative data collected from the transcriptions of open-ended questions in responses to changes in activity limitations and participation restrictions, feelings about oneself, and qol were coded and analysed using quantitative content analysis (züll 2016). a categorisation scheme, using survey descriptors as coding categories, was developed. the scheme and categories underwent pilot testing by the two primary coders (the researcher and a colleague) and were revised until intercoder agreement was achieved (züll 2016). coding was completed using a microsoft excel spreadsheet. to confirm the quality of the coding, a third coder independently coded a sample of the responses (10% of all open-ended responses) for reliability. the findings were peer reviewed by two independent academic rehabilitation professionals with experience in phc and research to establish agreement on all scores. to ensure validity of the participants’ or their caregivers’ ratings of performance in the domains of activity limitations and participation restrictions, the descriptive ratings were triangulated with the coded data to confirm consistency for each domain (züll 2016). data pertaining to adult service users and information provided by caregivers regarding their children, who were also service users, were analysed separately. this approach was employed to accommodate age-related differences in activities and participation, utilising distinct spreadsheets and codebooks for each group. ethical considerations ethical clearance to conduct this study was obtained from the university of the witwatersrand, human research ethics committee (medical) (no. m190466). participants, adult service users and caregivers gave written informed consent to participate in the study and be audio recorded following explanation and discussion about the study, and understood that participation was voluntary, and they could withdraw at any stage in the research process. confidentiality during the data analysis, results and publication that would arise from the study was ensured through assigning participants a participant code and only the first author having access to the audio recordings of transcription. results sociodemographic information thirty-eight participants, including 21 adults and caregivers of 17 children, completed the survey (table 1). most adult participants were female (52.38%), and most children were boys (70.59%). the age distribution showed that most participants fell within middle childhood (3–7 years) and middle adulthood (41–60 years) age ranges. nearly half of the participants receive a social grant. additionally, 42.86% of adult participants had completed 12 years or more of education, but only one-third were employed and nearly a quarter were retired. physiotherapy had the highest attendance rate among adults (62.50%), but the lowest among children (26.67%). speech therapy had the lowest attendance among adults (12.50%), and audiology services were not routinely available at the community health centres (chcs) during the time of data collection, and were therefore referred to the higher level of care. table 1: sociodemographic information of rehabilitation service users in primary healthcare facilities in a metropolitan district (n = 38). factors related to attendance at rehabilitation services most participants attended clinic d in the metropolitan district (table 2). based on the who impairments (body function) codes (who 2002), all the adult participants presented with neuromusculoskeletal and movement-related functions disorders (b7). among the children, a small percentage had disorders in voice and speech function (b3) (5.9%), sensory function (b2) (11.8%), and mental function (b1) (17.7%). most adult participants were referred for rehabilitation at the phc level (38.1%), and most children were down referred from the tertiary level (53%). the majority of both adult and children service users attended rehabilitation sessions monthly (71.4% and 64.7%, respectively). table 2: factors related to attending rehabilitation in primary healthcare facilities in a metropolitan district (n = 38). change in activities and participation before and after rehabilitation in adults for adults, the activity limitations and participation restriction areas assessed included self-care, domestic life, mobility, community, social and civic life, and major life areas related to work (table 3). table 3: change in activities and participation before and after rehabilitation for adult participants (n = 21). notable changes were observed in two domains elaborated in the following subsections. self-care (eating, washing, dressing) participants showed a significant improvement (p = 0.032) in their independence in eating, dressing, and bathing after rehabilitation. some participants (28.57%) still required assistance with dressing and bathing, but overall, self-care abilities improved, as shown in the following comments: ‘after seeing [therapist x] … i was doing exercise that [therapist x] gave me … it … helps me … i was doing some of the things myself … not … helped by anyone.’ (p38, male, 37 years) ‘a lot of change because … i can dress by myself, and i can bath by myself, and i can eat by myself.’ (p05, male, 25 years) domestic life (cooking, cleaning) participants reported improved independence in household tasks, such as washing dishes and cleaning cupboards. cooking and cleaning were not differentiated, except by one participant who is unable to walk but could independently wash dishes. one participant indicated that she could cook and clean but was unable to do laundry. one participant described his experience, saying: ‘i always bring dishes to wash them sitting down. cleaning my cupboard, dishes inside, clean inside there … sitting down.’ (p30, male, 64 years) mobility a significant improvement (p = 0.006) in mobility was observed and participants reported increased ability to move around, walk, and perform activities. six participants indicated that they were unable to move around without help before rehabilitation. one participant described her experience as follows: ‘and for me it was very difficult to move and to do any type of activity. and my brother helped me to move at home, and without his help it was very difficult.’ (p25, female, 49 years) those using wheelchairs and crutches reported mild to moderate difficulty after rehabilitation, but one participant required assistance to push the wheelchair to move around. all the participants reported they had started to walk after intervention, even if only indoors. some continued to rely on a wheelchair for long distances. they described their situations as follows: ‘i can’t walk. i just started now … my house is too little … but i walk by myself … in the yard … not in the street.’ (p32, female, 67 years) ‘now she can walk around … she walks with a walker in the house, in the yard … but street is too far … we fetch the wheelchair.’ (p14, female, 56 years) community, social, and civic life most participants did not have trouble with socialising, visiting, or attending church after rehabilitation. one participant’s communication skills improved after intervention: ‘she’s much better … she can communicate with me … she talks to them [family members] … they obviously don’t understand her … family … she talks to them.’ (p24, female, 55 years) major life areas (work) a small percentage of participants were employed after rehabilitation and nearly 20% successfully returned to work. only two participants were not ready to return to work. the participants described their situation as follows: ‘not yet [ready to go back to work] … applied for a dg [disability grant].’ (p08, male, 37 years) ‘i’m working … i do everything at work … i’m back … at where i worked [before rehabilitation] … everything is fine … i’m getting my own income.’ (p29, female, 41 years) feelings about oneself (self-perception) and quality of life in adults participants reported a marked improvement in self-perception (47.61%) and qol after rehabilitation. many participants developed a more positive sense of self, and statistically significant positive changes were observed in their qol (42.85%; table 4). table 4: changes in feelings about self and quality of life before and after rehabilitation for adult participants (n = 21). the following quotes are examples of the participants’ experiences before rehabilitation: ‘i was feeling negative about myself because of the way i was … i thought … that’s the end of the story with me because … i couldn’t walk. i couldn’t do anything. i was crippled.’ (p07, male, 38 years) ‘poor … i couldn’t do anything for myself … even to take a bath for myself.’ (p38, male, 37 years) the following quotes are examples of the participants’ experiences after rehabilitation: ‘it’s very good … because i’m able to do some things … to wash, to go to the shop by myself, not asking somebody.’ (p30, male, 64 years) ‘positive … i’m moving better, and i can do the things that i was not able to do before.’ (p28, female, 42 years) change in activities and participation before and after rehabilitation in children for children, the activity limitations and participation restriction areas assessed included self-care, play, recreation and leisure, mobility, community, social and civic life, and major life areas related to school/education (table 5). table 5: changes in activities and participation before and after rehabilitation for child participants (n = 17). notable changes were observed in several domains that are elaborated in the following subsections. self-care (eating, washing, dressing) three caregivers noticed that their children showed improved independence in self-care such as eating and feeding themselves with some assistance or independently. however, they still require assistance with tasks such as dressing and bathing. while there was a statistically significant improvement (p = 0.011) in self-care after rehabilitation, most of the children still need some support from their caregivers as they were young. the following comments are examples of the participants’ experiences: ‘i just take the pyjamas and put it on the bed … he can take off … clothes … and wear … pyjamas.’ (caregiver, male child, 5 years) ‘i am bathing him … the head and the face. he can bath the body … i wipe him … give him the cloth … to wash himself … every day.’ (caregiver, female child, 6 years) rehabilitation services trained a mother on how to assist her child with feeding, and she said: ‘it’s helping a lot … some of things that i don’t know. they tell me that if you go home you can do like this.’ (caregiver, male child, 2 years) play, recreation, and leisure just over half of the participants mentioned playing. most children were able to play, but some limitations were reported in playing with others before rehabilitation. one participant said: ‘she was playing a little bit … but she likes sitting at home.’ (caregiver, female child, 3 years) most children (11.76%) play with others in different settings after rehabilitation, but three children still found it mildly difficult. only one child has severe to moderate difficulty while playing after rehabilitation and his caregiver described the situation as follows: ‘he seemed to be very angry. instead of getting a toy and play with a toy, he gets a toy and throw it away.’ (caregiver, male child, 5 years) mobility a statistically significant improvement in mobility was observed (p = 0.033), and most children achieved independence in moving within their homes after rehabilitation. prior to receiving rehabilitation, only 17.64% of children were able to move without difficulty, and 70.58% had mild to severe problems with mobility. the youngest child falling into this category was 21 months old. two caregivers explained it as follows: ‘he was still improving. he could move on his buttocks. he did it on that time when i was not coming here.’ (caregiver, male child, 5 years) ‘no balance [to enable walking]. she was only sitting.’ (caregiver, female child, 3 years) a statistically significant improvement (p = 0.033) was reported for mobility in the children after rehabilitation. none of the children were reported to have severe or complete difficulty in mobility after rehabilitation. even though some children had not reached the developmental milestone of walking, most were walking inside and outside the house. this was expressed as follows: ‘he’s improved … [he is] moving around everywhere … the movement started to improve, like kicking. he didn’t know how to use his leg.’ (caregiver, male child, 2 years) ‘he’s moving around. he can sit … in the chair …. he is able to move. he can get out of the chair and crawl.’ (caregiver, male child, 4 years) community, social, and civic life social participation was affected for most children (70.58%) because of inability to use language. many children showed statistically significant improvement (p = 0.019) in socialising and communicating with others, enabling them to participate more fully in social activities. visiting was rarely mentioned, but improvement after therapy was indicated for four children who were now able to communicate and whose behaviour improved, thus allowing them to socialise, as seen in the following comments: ‘he can communicate … can now say words … knows [his] sibling’s names … he can hear the song that he loves, he can sing, but not the lyrics.’ (caregiver, male child, 3 years) ‘he is … comfortable talking to others. he … participates. the behaviour started to change since i attended [rehabilitation].’ (caregiver, male child, 2 years) major life areas (school and education) some children faced difficulties with schooling because of communication difficulties and challenging behaviour, but improvements were observed in these two areas after rehabilitation. thirty-five per cent of the children were attending or had previously attended a crèche or school before rehabilitation. one child faced severe difficulties with schooling because of communication difficulties and challenging behaviour. his caregiver explained that: ‘he has problems at crèche, behaviour and can’t communicate. it was difficult because … he gets agitated and become angry … maybe he is crying … you grab him, he bites you.’ (caregiver, male child, 3 years) positive change after rehabilitation was noticed for all school-going children. all children at mainstream schools were reported to have no difficulty with learning, and an improvement in communication abilities allowed another to successfully attend school after rehabilitation. this was expressed as follows: ‘after … the help that we got from the rehab, she was able to go back to school and started writing again. she even got an award for being the first one in her grade, you know.’ (caregiver, female child, 6 years) ‘he is in school now. he is speaking with everybody … so people understand him … he understands them … his schooling days … it’s easier for him.’ (caregiver, male child, 2 years) feeling about self (self-perception) and quality of life in children overall, caregivers reported more positive self-perception and improved qol in children after receiving rehabilitation services. statistically significant improvements were observed in both aspects (p = 0.008 and p = 0.017, respectively), although some caregivers attributed these improvements to their own acceptance and adaptations to the issues rather than changes in function (table 6). table 6: change in feeling about self and quality of life before and after rehabilitation perceived by caregivers for child participants (n = 21). the following comments are examples of the different participants’ perceptions of their child’s experiences before rehabilitation: ‘i don’t know how to put this into perspective … some of his attitude or emotions … it’s only now that we can see it coming up.’ (caregiver, female child, 3 years) ‘his quality of life … i think … he’s in between … he is going to be fine … it’s difficult for me … his life is bad.’ (caregiver, male child, 4 years) the following comments are examples of the participants’ experiences after rehabilitation: ‘so now, she’s a very happy, playful child.’ (caregiver, female child, 6 years). ‘he is going to have a nice life.’ (caregiver, male child, 4 years) discussion the findings of this study provided valuable insights into the outcomes of rehabilitation services provided by an interprofessional team including physiotherapists, occupational therapists and speech and language therapists at the phc level. the study explored the perceived changes in activity limitations, participation restrictions, well-being and qol from the perspectives of service users. the results indicated that both adult and caregivers of child service users experienced statistically significant improvements in activity participation-specific domains. for adult participants, significant improvements were observed in the domains of self-care and mobility. over half of the adults achieved full independence in self-care, while others still required some assistance, leading to a reduced burden on half of the caregivers. similarly, with the exception of one adult, all participants reported improved mobility within their homes and yards, with over 40% being able to mobilise in the community. this change was also reported in another study on outcomes of phc rehabilitation in clients living with human immunodeficiency virus (hiv) in south africa (cobbing, hanass-hancock & myezwa 2017). these positive changes reflect the impact of rehabilitation services on individuals’ functional abilities and overall satisfaction with their participation. similarly, for children, significant improvements were found in self-care and mobility. while only a few children achieved complete independence, the assistance they required became more age-appropriate after receiving rehabilitation, leading to improved participation in daily activities. notably, communication improvements in children facilitated socialisation within the family and community, and some children were able to attend school successfully. the positive outcomes reported in this study align with previous research results that demonstrated the positive impact of rehabilitation interventions on functional outcomes and qol. global studies report similar improvements in mobility, self-care, and social participation following phc rehabilitation interventions (bolt et al. 2019b; de coninck et al. 2017; eklund et al. 2015; kjerstad & tuntland 2016; meisingset et al. 2021). these findings support the who’s (2019) emphasis on the provision of rehabilitation services at the phc level for individuals of all ages. however, it is essential to acknowledge that some domains, such as domestic, community, social, and civic life; major life areas related to work for adult participants; play, recreation, and leisure; and school/education for child participants did not show statistically significant positive changes. activity limitations in these domains are not easily addressed in the clinic environment. a possible explanation is that providing rehabilitation requires a more comprehensive approach and consideration of the specific environment in which the activities occur. addressing these activity limitations may involve incorporating service delivery models that move services out of the chcs, such as outreach through home visits and task shifting to community rehabilitation workers, to better integrate rehabilitation at the phc level (larsson-lund & nyman 2017). the study also reflected the perceptions of the users to realistically evaluate the outcomes of rehabilitation interventions. when the perceptions of service users are probed, it is important to consider a person-centred approach that is user-friendly and not influenced by power-dynamics. tailoring assessment tools to the specific population being assessed is crucial to obtain accurate and relevant information (dronavalli & thompson 2015). in this study, simple scales and structured interviews allowed participants to express their views on changes in activities and participation and considered caregivers’ feelings and qol in relation to caring for their child and the impact of rehabilitation on them (irwin et al. 2012). although the findings in this study showed that rehabilitation intervention has a positive effect, the authors are aware that the participants are the cohort who utilised rehabilitation services and that assessment and comparison with participants who did not engage in rehabilitation would be more reflective of the effect of rehabilitation. the sustainability of the positive rehabilitation outcomes is an important factor to consider, especially at phc level. outcomes can be enhanced by including other models, providing support for caregivers of children with disabilities, and creating community-based groups for adults with neuromusculoskeletal impairments (scheffler & mash 2019). limitations of the study the study sample was not heterogeneous in terms of disability because the participants presented predominantly with neuromusculoskeletal impairments, which may not fully represent the broader range of rehabilitation needs in the district. only participants who were able to access the clinics for rehabilitation over three sessions were included, and thus, the results cannot be generalised to those who had limited or no access to these services. the measure of qol in children was more of a representation of the caregivers’ perceptions than of the children themselves. conclusion the interprofessional phc rehabilitation services showed positive improvements in activities and participation, self-perception, and qol from the perspectives of service users. this study provides valuable insights into the outcomes of phc rehabilitation services and emphasises the importance of considering person-centred approaches and service-user perspectives when evaluating rehabilitation interventions. the following recommendations are proposed for future research and policy implementation: adapting services to varying environments: while clinic-based services or the clinic model proved effective in certain domains, it is important to explore alternative service delivery models beyond the clinic setting. for instance, home visits and task shifting should be considered to address domains such as domestic life, which may be better attended to in patients’ homes. addressing gaps in service provision: community-based support groups and self-help groups should be incorporated into interventions to address social activities and work-related challenges for adults. the self-help groups should explore self-employment opportunities in contexts with limited employment opportunities. exploring barriers to access: future research should focus on understanding the barriers that prevent individuals with disabilities from accessing rehabilitation services, particularly those who require rehabilitation but are not accessing these services. identifying these barriers will enable targeted strategies to improve access and inclusivity in rehabilitation service delivery. patient evaluation of service: longitudinal studies should be conducted to assess the sustainability of positive rehabilitation outcomes over an extended period. long-term evaluations will provide valuable insights into the lasting impact of phc-level rehabilitation interventions and guide efforts to integrate rehabilitation services into phc. strengthen service-user participation and involvement: the voice of the service user is important and must be incorporated when evaluating the effectiveness of phc rehabilitation in activity limitations, participation restrictions, and service planning. such evaluation measures should consider not only the functional abilities of service users but also the impact of rehabilitation on their caregivers and their qol. person-centred measures: develop and implement person-centred evaluation tools tailored to the specific population being assessed. service providers should routinely report on outcomes related to body functioning, activities, and participation based on standardised tools for each patient to support the effectiveness of rehabilitation. advocacy for education and employment opportunities: collaborative strategies between the health, disability, and education sectors to strengthen advocacy efforts are necessary to ensure children have access to inclusive and quality education in alignment with the sustainable development goals. by implementing these recommendations, rehabilitation services can become more effective, inclusive, and responsive to the needs of service users. furthermore, rehabilitation service providers can work collaboratively to influence policy through tangible outputs to demonstrate the impact of rehabilitation interventions and promote the overall well-being and social inclusion of individuals with disabilities. these measures can achieve recognition of rehabilitation services and effective integration of these services into phc. acknowledgements the authors would like to acknowledge prof. p. de witt and dr. d. franzsen for their role in the study and their contributions in the reviewing of this article. this article is partially based on the author’s thesis entitled “integrating rehabilitation services at primary healthcare levelin johannesburg, south africa” towards the degree of doctor of philosophy in the occupational therapy department at the university of the witwatersrand, south africa, with supervisors prof. helen myezwa and dr. fasloen adams. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.j.m. conceptualised and designed the study, collected data, carried out the initial analysis, secondary analysis, drafted, reviewed and revised the article. h.m. and f.a. coordinated and supervised the study including conceptualisation and critically reviewed the article for important intellectual content. funding information this research was supported by the consortium for advanced research training in africa (carta), which is jointly led by the african population and health research center and the university of the witwatersrand. it is funded by the carnegie corporation of new york (grant no: g-19-57145), sida (grant no: 54100113), uppsala monitoring center, norwegian agency for development cooperation (norad), the wellcome trust (no. 107768/z/15/z), and the uk foreign, commonwealth & development office, with support from the developing excellence in leadership, training and science in africa (deltas africa) programme. data availability the data that support the findings of this study are available from 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sciences, mannhein, germany. abstract introduction disability – changing paradigms disability versus linguistic minority research methodology ethical considerations research findings and interpretive discussion conclusion and recommendations acknowledgements references about the author(s) diane bell school of business, university of stellenbosch, south africa arend carl faculty of education, university of stellenbosch, south africa estelle swart faculty of education, university of stellenbosch, south africa citation bell, d., carl, a. & swart, e., 2016, ‘students with hearing impairment at a south african university: self-identity and disclosure’, african journal of disability 5(1), a229. http://dx.doi.org/10.4102/ajod.v5i1.229 original research students with hearing impairment at a south african university: self-identity and disclosure diane bell, arend carl, estelle swart received: 28 sept. 2015; accepted: 25 may 2016; published: 22 sept. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: a growing number of students with hearing loss are being granted access to higher education in south africa due to the adoption of inclusive educational policies. however, available statistics indicate that participation by students with hearing impairments in higher education remains low and research suggests that support provisioning for those who do gain access is inadequate. objectives: this article aims to illustrate that the assumed self-identity of students with hearing impairment influences their choice to disclose their disability. the choice not to disclose their hearing loss prevents them from accessing the necessary reasonable accommodations and this in turn may affect their eventual educational success. method: reported here is a qualitative descriptive case study at a south african university. purposive sampling methods were employed. data were gathered from in-depth interviews with seven students with hearing impairment ranging from moderate to profound, using spoken language. constructivist grounded theory was used as an approach to the process of generating and transforming the data, as well as the construction of theory. findings: all the student participants identified as having a hearing rather than a d/deaf identity cultural paradigm and viewed themselves as ‘normal’. linked to this was their unwillingness to disclose their hearing impairment and thus access support. conclusion: it is crucially important for academic, support and administrative staff to be aware of both the assumed ‘hearing’ identity and therefore subsequent non-disclosure practices of students with a hearing impairment using the oral method of communication. universities need to put measures in place to encourage students to voluntarily disclose their hearing impairment in order to provide more targeted teaching and learning support. this could lead to improved educational outcomes for students. introduction hearing impairment is recognised as a global pandemic (tucci, merson & wilson 2009) and it is also the most common congenital abnormality found in newborns (shemesh 2010). in south africa, stats sa, using the washington group model, estimates an impairment prevalence of 7.5% derived from the 2011 national census. the results from the same census (statistics south africa 2011) related to hearing impairment revealed that 0.1% of the population ‘cannot hear at all’, 0.5% experience ‘a lot of difficulty’, 2.9% experience ‘some difficulty’ and the balance 96.4% have ‘no difficulty’ hearing. since 1994, the south african government has been committed to the transformation of the entire education system with changes in global initiatives regarding inclusive education, also influencing the drive towards inclusion locally (naicker 2000; united nations convention on the rights of persons with disabilities 2006). therefore, higher education institutions (heis) have been encouraged to promote both equal access and participation to all students, irrespective of race, gender, language, age or disability (department of education 2001). more recently, the south african government has released the draft national disability rights policy (department of social development [dsd] 2015a), with the express purpose of establishing a policy framework that provides coherence to and guides government activity across disability-strategic areas of public policy and programmes as well as the white paper on the rights of persons with disabilities (wprpd) (dsd 2015b), which aims to accelerate transformation and redress by promoting full inclusion, integration and equality for persons with disabilities. the vision of the wprpd is the domestication of the united nations convention on the rights of persons with disabilities (uncrpd) and the creation of a free and just society, inclusive of all persons with disabilities (dsd 2015b). both these documents could serve to promote the rights of all students in higher education. despite students with disabilities being increasingly granted access to higher education, it is disturbing to note that, according to a survey conducted by crous (2004:228) at three universities in south africa, it was found that less than 0.5% of the student population was represented by students with disabilities. more recent data from 22 of the 23 public universities showed that 5 807 students with disabilities were enrolled in heis in 2011, accounting for only 1% of the total enrolment (foundation of tertiary institutes of the northern metropolis [fotim] 2011). it is also interesting to note that, although levels of support vary from university to university, the support is mainly provided to those students with mobility and visual impairments (fotim 2011). as per the wprpd (dsd 2015b), most young adults aged 20–24 years with severe difficulties across all functional domains were not attending any tertiary institution. the white paper further reports that only one-fifth of persons with severe difficulties were attending any tertiary institution. statistics in south africa regarding the numbers of students who have disclosed disabilities, and more specifically hearing impairment, are not readily available due to factors such as differing definitions of disability, misinterpretation of disability codes on university application forms and stigma associated with disclosure of a disability (de cesarei 2014). higher education management information system (hemis) data obtained from the department of higher education and training (dhet) for the period 2003–2010 indicated a growth in the prevalence of students with hearing impairment registered at heis in south africa from only 155 in 2003 to 326 in 2010. despite this growth, it is clear that students with hearing impairment remain completely under-represented and under-supported in higher education, in both developed and developing countries (brett 2010:5; higher educational statistical agency 2011). many reasons may be offered for this under-representation, such as the needs of students with hearing impairment being unique to each individual student, their support needs being complex due to communication barriers and the cost of support provisioning, such as for (human) note-takers and interpreters. little is known about how students with hearing impairment experience higher education (lang 2002; luckner, slike & johnson 2012). however, what is known is that of those students who do enter higher education, many do not graduate successfully due to a variety of factors, such as lack of support, specifically for students with hearing impairments. the academic achievement gap between students who hear and those with a hearing impairment is a frequently reported fact (marschark 2006; meadow-orleans 2001; moores 2003). in south africa, almost no research has been conducted concerning students with hearing impairment (using the oral method of communication) in higher education, especially regarding their teaching and learning needs (fotim 2011). previous south african studies have mostly focused on teacher training (of the deaf), early hearing detection and intervention, development of a deaf identity and sign language and deaf adults’ views on deaf education in south africa (mcilroy & storbeck 2011). note the use of terminology: hearing impairment refers to a condition in persons with varying degrees of hearing loss not using south african sign language (sasl) as a primary medium of communication, who use various means of communication and assistive hearing technologies. these include speech, speech/lip reading, hearing aid systems, cochlear implants, bone anchored hearing aid and applicable assistive listening devices, etc., or a combination thereof (nair 2015). the issue of identity is crucial for academic success as students’ self-perception and their perception of how others view them play a pivotal role in students’ interactions with both institutional processes and structures, which has important implications for accessing support through personal disclosure as well as teaching and learning experiences, and possibly educational outcomes. due to the invisibility of hearing impairment, the assumed identity of the student with a hearing impairment is open to perpetual negotiation (‘normal hearing’ versus having a disability). by avoiding confronting their hearing impairment through self-disclosure and seeking reasonable accommodations, these students may not be able to enjoy full and equal participation in academic life (hindhede 2011). this article aims to illustrate that the assumed self-identity of students with hearing impairment influences their choice to disclose their disability. this choice may in turn negatively affect their eventual educational success. it is important for academic, support and administrative staff to be aware of both the assumed identity and non-disclosure practices of students with a hearing impairment using the oral method of communication in order to put measures in place to encourage disclosure and to provide more targeted teaching and learning support. the next few sections of this article will focus firstly on the theoretical perspectives and then the empirical study. the theoretical aspects are: an exploration of the constructs of disability as these constructs tend to frame our thinking and thus our responses to persons with disabilities; the two main ways in which deafness is conceptualised; how the assumed identity of a student with a hearing impairment as either culturally deaf or hearing contributes to positive aspects of his or her social identity and finally; how this can be measured via the deaf identity development scale (dids) (glickman & carey 1993). disability – changing paradigms throughout history, changes in society have frequently been paralleled by new ways of thinking or new paradigms. over the last 20 years, there have been challenges to dominant perceptions of and attitudes to people with disabilities (council on higher education 2005) as well as a great deal of discussion about different theoretical approaches to disability. in the western world, the history of disability has been characterised by the progressive development of various models of disability, with the medical/genetic model (oliver 1996) and the social model (shakespeare 2006) (currently viewed as the dominant model by disability activists and academics within higher education globally) being most prominent. these models or constructs of disability have set the parameters for society’s response to people with disabilities, framing our thinking and way of living. in a recent article by luckner et al. (2012:59), five specific challenges that often occur as by-products of a hearing impairment and that interfere with typical ways of learning are presented, namely: language, vocabulary and literacy delays; gaps in background and domain knowledge; inadequate knowledge and use of learning strategies; social skills deficits; and reliance on assistive technologies. in south africa, students with hearing impairment face a multitude of barriers in higher education. there could be many reasons to explain why these barriers exist, such as lack of support, lack of awareness of the accommodation needs of these students, the ‘invisibility’ of their hearing impairment, the uniqueness of hearing impairment and therefore complex support needs, teaching faculty ignoring calls for attendance at disability-related professional development courses and lack of financial and human resources, to mention but a few. these factors make it ‘unattractive’ to universities to admit students with hearing impairments, resulting in under-representation in higher education. furthermore, these barriers, as reported by howell (2006:170), have a profound and sustained effect on the psychosocial well-being and functioning of the student. disabled people who have managed to attend heis argue that the energy, emotional resources and levels of stress involved in dealing with the overwhelming range of barriers that confront them are extremely undermining and place them at an ongoing disadvantage in terms of other students, and if they are unable to ‘deal with’ these issues, the prevailing attitudes and prejudices towards their abilities are reinforced. it is important to address these barriers to ensure educational success for students with hearing impairments. if not, these students are more likely to be excluded from participation, more likely to require services to enable their participation and more likely to self-identify in questions relating to disability status. in south africa, the very limited response by universities to students with hearing impairment occurs in the form of various types of teaching and learning support, such as preferential seating, extra writing time, hearing augmentation devices (e.g. hearing loops) and note-takers. as a move away from the previously dominant medical model (where disability could be medically ‘fixed’), the social model of disability (where persons with disabilities are ‘disabled’ by society) is firmly entrenched (more in words than in practice) in higher education in south africa (che 2005). although support services for students with disabilities are currently based on this model, it seems that reindal’s social-relational model (2008) could be more suited to inclusion as it retains the main tenets of the social model of disability, such as the effects of impairment and the phenomenon of disability, elaborated as a ‘social relational phenomenon’ but it also maintains the perspective of ‘oppression and discrimination’ in contrast to ‘disadvantage due to restriction of activity’ (reindal 2008:143). using this model, one can equally incorporate the personal experiences of persons living with reduced functions, both socially and without adopting the individualistic or medical model. in terms of this social-relational model, a person with reduced hearing function would be referred to as being ‘hearing impaired’ (in line with the social model), but additionally, his or her personal experiences of being a person living with reduced function plus discrimination and oppression would be encapsulated (bell 2013). the findings in the present study, with respect to identity, stigma and disclosure, were thus viewed through this model (as a lens) as the social-relational model works towards taking the ideals of inclusion forward, which could have a significant effect on educational attainment, especially for students with hearing impairment in south africa. the following section explores the two main ways in which deafness is conceptualised. disability versus linguistic minority in society, there are two main constructions of deafness: one construes ‘deaf’ as a category of disability while the other construes ‘deaf’ as being a member of a linguistic minority group with its associated culture (lane 1994). large disparities exist between these two groups, with the two constructions residing at opposite ends of a continuum. this, unfortunately, in the south african context, has been to the detriment of all persons who have a hearing impairment as there is no one organisation advocating for their rights and thus little progress has been made. each of the d/deaf constructions (‘deaf’ as a category of disability versus ‘deaf’ as linguistic minority group with their associated culture) has a core client group. the struggle between these two groups has endured for centuries (lane 1994), in part because there is no simple criterion for identifying most childhood candidates as clients of one position or the other. it is generally accepted that if a hearing adult becomes deaf from illness or aging (develops a hearing impairment), then that person has a disability and he or she is not regarded as a member of deaf culture (lane 1994). the same is true of deaf parents insisting that their deaf child is part of the linguistic minority group. however, if a child with a profound hearing impairment is born to hearing parents and they choose cochlear implantation, their choice and membership are rejected by the deaf community. in this study, the construction of ‘deafness’ was considered as a category of disability, which has an effect on the identity of the person with a hearing impairment who typically identifies as being ‘culturally hearing’. the next section explores social identity theory as it relates to the adoption of a specific type of identity by students with hearing impairment, which affects their choice to disclose their disability or not. social identity theory according to social identity theory (tajfel 1981), an individual will remain a member of a group if that group contributes to positive aspects of his or her social identity, such as self-esteem. bat-chava (2000:420) argues that, through the route of individual mobility, ‘deaf’ people may assume a culturally hearing identity, assimilating as much as possible into the hearing world by using their residual hearing (either through amplification or cochlear implants) and speech-reading often resulting in a positive social identity through academic and professional accomplishment. the selection of a culturally hearing identity is often evident when students with hearing impairments attempt to assimilate fully and push themselves to overachieve in mainstream environments (bat-chava 2000). they tend to work much harder than their hearing peers to perform, with successful achievement, which in turn builds their self-esteem (bat-chava 2000). it is my contention that one’s personal construction of disability is a multifarious phenomenon, resulting in people with disabilities often having complex identities, seeing themselves as ‘normal’ and with limited identification with their hearing impairment. the choice of cochlear implantation also affects identity. this is an emotive topic as some critics view the choice of surgical implantation as a cure – trying to become ‘normal’ and to being in denial concerning one’s disability (sparrow 2005). a key issue in the debate about the appropriateness of implantation for children with hearing impairments has been around the notion of identity – where the individual ‘fits in’. wald and knutson (2000:89) questioned a group of 45 adolescents with and without cochlear implants regarding issues of deaf identity and concluded that the groups were similar in many respects, but that the cochlear-implanted group rated hearing identity as a desirable goal more favourably than the non-implanted group. the authors attribute this to the audiological benefit that the implanted group received. in another study by wheeler et al. (2007:314), some participants commented on the fact that, because of their good spoken language skills, and in particular, speech intelligibility, they were sometimes perceived as hearing by people who did not know them well. wheeler et al. (2007) further found that the majority of the participants recognised themselves as intrinsically deaf (having a hearing impairment) in the sense that they could not hear without their implant but they did not demonstrate a culturally deaf identity. the following section explores the continuum of the dids. deaf identity development scale in 1993, glickman and carey developed an instrument, the dids to measure how deaf people identify with the deaf community and deaf culture. along the continuum, four kinds of deaf cultural identities, presumed to be developmentally related, are provided. the first kind of identity is called ‘culturally hearing’, which refers to the dominant ‘hearing’ understanding of deafness as a medical pathology or disability. the second kind of deaf cultural identity is called ‘culturally marginal’. this orientation is typical of people who experience themselves as fitting between the deaf and hearing worlds, comfortable in neither. the third kind of deaf cultural identity is called ‘immersion’. this is relevant to the period when deaf people immerse themselves in the deaf world. the last kind of deaf cultural identity is called ‘bicultural’, which means they are comfortable in both worlds. according to this scale, students with a hearing impairment and who make use of oral communication could be considered, in terms of identity, as ‘culturally hearing’ – their hearing loss seen as a disability. often, according to hindhede (2011), in order to avoid embarrassment, the culturally hearing group pretend that they have heard what has been said and in order to avoid any awkward exposure and in an attempt to ‘be normal’, they refrain from requesting any accommodations that would help facilitate communication. they also develop what they perceive, from their point of view, to be perfectly adequate coping strategies in an attempt to be viewed as hearing. the following section will describe the method used, provide a rational for the selection of the case and offer participant details. research methodology this research comprised a qualitative descriptive case study which sought to ensure that the topic of interest was well explored and that the essence of the phenomenon was revealed. the context was a south african university and the units of analysis were students with hearing impairment, their lecturers and the head of the disability unit. a constructivist paradigm was employed, which assumes that reality is socially constructed (charmaz 2006). this implies that there is no single reality, but that each single event is interpreted through multiple realities (merriam 2009:9). through the subjective experiences shared by participating students, an understanding of how they, as a ‘bounded system’ (merriam 2009), constructed their own meaning of their personal identity emerged. the present study was also descriptive in nature, describing the experiences of being students with a hearing impairment in a ‘hearing’ university. their social worlds were explored, using both the participants’ and the researchers’ understandings (ritchie & lewis 2003). as a case study researcher, i was also able to use my experiences as a mother of a daughter with a profound hearing impairment, a lecturer, my involvement in the disability sector, but most importantly, the contextual accounts of the participants to assist me in the construction of knowledge. one south african university was chosen as the context for the cases to be studied for the following reasons: hemis data (dhet 2010) indicated that the selected university had 43 students with disclosed hearing impairments in 2008 (from 15 in 2007) and was therefore selected on account of this high number of enrolments. this particular university has been supporting students with hearing impairment for the past few years and should therefore have gained some knowledge and experience in supporting them. only one university was selected as a single case, rather than multiple universities as multiple cases, as each institution brings with it its own identity, culture, historical context and varying support for students with disabilities, particularly students with hearing impairments. due to newborn screening and other active early identification programmes, children are fitted with hearing instruments (including cochlear implants) at a young age, which significantly impacts language development, but this is regionally dependent. thus, student communities from the different universities in south africa would differ significantly. selecting and describing the participants a purposeful sampling procedure (patton 2002; silverman 2010) was used to select the sample. the criteria for inclusion of students in the study were that participants: had to have hearing impairments, regardless of the degree of hearing impairment or the age of onset; needed to be registered students at the selected university (either undergraduate or postgraduate); and had to make use of spoken language (either english or afrikaans as their home language) rather than sign language. with the required permission obtained, students who had disclosed their hearing loss to the disability unit at the selected university were invited by email to participate in the research. seven out of a possible 13 students volunteered to participate in the study (refer to table 1). table 1: biographical data for each student participant. data generation methods in-depth interviews were used to generate the data. i arranged an initial meeting with each student, a ‘get-to-know-each-other’ session, to build a relationship. at this meeting, i explained the nature and aim of the research project, requested their participation and asked them to complete a biographical questionnaire, which provided a large amount of background information, for example, type of hearing loss, age of onset, use of assistive technologies. a follow-up meeting was scheduled with each student at which the individual in-depth interview took place. the interviews were conducted in a quiet location on campus, to facilitate barrier-free communication. an interview guide (refer to box 1) was designed to ensure that all relevant topics were covered during each discussion (patton 2002). this assisted to ensure that certain themes were explored in depth. participants were provided with a copy of the interview guide so that they could read the questions as well as listen to them being asked. the interviews were digitally audio-recorded with the written consent of the participants with the field notes taken during the interviews assisting the researcher in formulating new questions or returning to others that required more discussion during that session. box 1: interview guide. making meaning of the data interviews were transcribed and then atlas.ti was used to code the data, form categories and themes and build network views (charmaz 2006; friese 2012). i followed the grounded theory coding process as explained by charmaz (2006:46) as it allowed theory to be ‘built’ from the data. this process involved an: initial coding phase: involves naming each word, line or segment of data. focused coding phase: uses the most significant or frequent initial codes to sort, synthesise, integrate and organise large amounts of data. theoretical coding phase: a sophisticated level where the theoretical codes specify possible relationships between categories developed during the focused coding. memos (within atlas.ti) were used throughout the data transformation process to assist with data interpretation while transforming the data. the measures used to ensure trustworthiness of the data were crystallisation (richardson 2000:934), member checks (holloway 1997:160), peer review (merriam 2009:219–220) and an audit trail (silverman 2010). ethical considerations students with a hearing impairment, or any other type of disability, are regarded as a vulnerable group (shargorodsky et al. 2010). for this reason, utmost care was taken to comply with ethical procedures. in this study, the rights, needs, values and desires of the participants were fully respected. permission was obtained from the study university’s ethical clearance committee to conduct the research, and the following ethical arrangements were taken into consideration: informed consent, anonymity, and confidentiality and protecting the participants from any harm. research findings and interpretive discussion this section will present the findings and provide an interpretive discussion around each. findings although the research goal of the larger study (bell 2013) focused on the overall academic experiences of students with hearing impairment using oral communication at university, the focus of this article is on the most significant finding, namely that all student participants were identified as having a hearing impairment rather than a d/deaf identity, which formed part of their cultural paradigm. linked to this was their unwillingness to disclose their hearing loss, which impedes access to support and possibly affects their eventual academic success. the findings are thus discussed by centring on a hearing/deaf identity cultural paradigm and disclosure of hearing impairment. hearing/deaf identity cultural paradigm having a hearing or d/deaf identity cultural paradigm refers to how the participants in this study perceived their self-identity. as asserted by thomas (2002:72), there is a grey zone between a normal and a disabled bodily state, which raises the question of identity. all participants in this study identified strongly with having a hearing identity, taking the hearing world as their ‘reference point for normality and the deaf world for abnormality, disability and deviance’ (glickman & carey 1993:276). embracing a culturally hearing identity refers to the dominant hearing understanding of deafness as a medical pathology, as per glickman and carey’s (1993) dids. culturally hearing persons, such as the participants in this study, value oral means of communication such as speech-reading, lip reading, use of residual hearing as well as fitting comfortably within the larger hearing world. participants in this study claimed self-identities that shift the focus away from the disability. this is in line with johnstone’s (2004) view of disability as an identity being a personal construction or a purposive attempt to making meaning of oneself in the world. if forced to disclose their hearing impairment, they would assume an overcompensating identity in order to cope with the notion of being classified ‘disabled’. this is clearly evident as shared by astrid and merle, ‘with me having a disability in the first place, i don’t see myself as disabled, i don’t see myself as being part of … [disabled] society. it has always been like that so … i was never regarded as someone who was deaf … even though i was deaf, i still went to school normally, they treated me normally and it wasn’t that i was isolated from the rest of the world, so i was part of it, the teachers were supportive and the students also.’ (astrid) ‘i really don’t see myself as being disabled … i have never been treated as someone who is deaf … and with me they won’t see immediately, they will assume that i am a normal person. that is how it has always been.’ (merle) i would assert that there are three main reasons for the participants in this study assuming a hearing identity: oral communication tradition, previous experience and invisible nature of hearing equipment. the first reason could be that they come from an oral communication tradition where lipand speech-reading as well as the use of their residual hearing are valued. except for one student, all seven participants came from hearing families. the participants also only generally interacted with hearing friends and peers, feeling that their self-identity should depend on personal rather than audiological definitions, and consequently contact with hearing peers was valued (leigh 1999). in such an environment, the hearing world is taken as the reference point for normality and the participants therefore did not view themselves as abnormal or disabled in any way. this characteristic of normalisation was a recurring theme throughout the data. the participants did not want to be seen as ‘different’, but rather viewed themselves as normal hearing university students. noelene expressed her self-identity as follows: ‘… and with me they won’t see immediately, they will assume that i am a normal person. that is how it has always been … i have always been a normal student.’ (noelene) the stigma of being labelled as disabled was strongly rejected by the participants. astrid explained her experiences at school as positive as she was not viewed as being disabled, while paul shared how he tried to cope on his own without disclosing his hearing impairment as he did not want any special concessions. the comments of this participant illustrate the rejection of labels. ‘i had a lot of teachers that would never treat me as a disabled student in the first place, but they would also forget about it [my hearing impairment] sometimes and when i think back now that was really good – that you are not different from anyone else, so just get on with it [life].’ (astrid) part of their hearing identity was taking on the responsibility to fit in and cope in a hearing world in order to gain employment and eventually be economically independent. one of the participants (barry) mentioned that he viewed the use of oral communication as extremely important and that the use of sign language was severely limiting due to special schools being under-resourced and therefore often viewed as having lower academic standards than mainstream public and private schools. none of the seven participants had ever been exposed to deaf culture or deaf communities and felt that the use of sign language was not supported in higher education or society at large and was therefore never an option for consideration. it also seemed that in a ‘hearing’ academic setting, which does not support the use of sasl, students with hearing impairment do not have a choice, in any event, but to assume a deaf identity. the second possible reason for the participants having a hearing identity is previous experience, namely the fact that they all came through mainstream primary and secondary schools, except for one student who attended a special primary school for learners with hearing impairment. in the mainstream environment, they reported that they were not treated as learners with a disability. thirdly, because of the often ‘invisible’ nature of a hearing impairment, especially for girls with long hair covering their hearing aids (speech processors), students with hearing impairment are often seen as ‘normal’ as the sensory impairment is not easily visible. in some cases, participants reported that they purposefully hid their hearing instruments in order to avoid being labelled and stigmatised as ‘deaf’ or ‘disabled’. if is often for this same reason, namely to remain ‘invisible’, that students with hearing impairment refuse to make use of any assistive listening devices which could make them ‘identifiable’ or ‘extra-visible’ (goode 2007). the issue of identity is critical as students’ self-perception/self-identity and their perception of how others view them play a pivotal role in their interactions with both institutional processes and structures, and this may have important implications for their academic success. for example, if a student with hearing impairment has a self-perception of being ‘normal’ or non-disabled, then his or her interaction with the institutional processes will be as a hearing student, without disclosing or requesting any learning support, potentially resulting in poorer academic results. the outcomes of this study support the findings by hindhede (2011), indicating that due to the invisibility of hearing impairment, the hearing disability identity is open to perpetual negotiation and, by avoiding confronting their impairment, the students are not able to enjoy full and equal participation in academic life which has the potential to result in poor educational outcomes. disclosure of hearing impairment disclosure of hearing impairment refers to the willingness (department of labour n.d.) of students to disclose their type of disability either on their university application form, to their lecturers and/or to their peers. in this study, it was found that the willingness of the student participants to disclose their hearing impairment was either purely for administrative purposes or to solicit additional support when encountering specific barriers to learning such as not being able to lip-read when lecturers walk around in the class, noisy classroom environments, etc. similar reasons for disclosure were also reported in a study by getzel and thoma (2008). it seems that the only reason why student participants disclosed on the university application form was due to it being viewed as a ‘legal’ requirement. had they been given a choice, they would not have disclosed their hearing impairment freely (ignored the section) as clearly explained by astrid: ‘i had to because it was on the piece of paper obviously, what kind of disability do you have? are you deaf? so i ticked the ‘deaf’ one.’ (astrid) the participants also referred to their hearing impairment as being ‘not so visible’ and they reported that friends often did not realise that they have a hearing impairment due to its ‘invisibility’. as merle said: ‘very few of them [friends], because it is not so visible, many people don’t know, some of my friends don’t even know.’ (merle) some disclosed their hearing impairment to their lecturers, but generally only if compelled to do so through circumstances, and one of the participants deliberately used his ‘disabled’ status to secure a place in the university residence. disclosure at university seems to be a reactive action in most cases, as expressed by noelene: ‘i never went to tell them of my disability … i feel it is not necessary to tell them unless i have a problem.’ (noelene) this phenomenon also made it difficult in the early phases of the research study to identify the student participants for this investigation. the most logical explanation for participants’ non-disclosure could be linked to their ‘hearing identity’ and their rejection of being labelled or stigmatised as ‘disabled’ (watson 2002). in south africa, there are also no positive incentives to encourage disclosure such as the disabled student’s allowance, which is offered to students with disabilities in the united kingdom. a further reason for participants’ non-disclosure could be linked to the fact that at school it was not necessary to disclose their hearing impairment in order to solicit any particular support as none was available or the additional support was not required due to smaller class sizes or a lack of self-advocacy skills. it was clear that the participants in this study did not want to define themselves or their relationships with others based on their hearing impairment. they tried to assimilate as much as possible into the hearing world, identified as culturally hearing, and thus chose not to disclose their hearing loss. conclusion and recommendations despite increased access for students with hearing impairment into higher education, such students generally remain under-represented, unaccounted for and under-supported; experiencing many barriers and having to develop personalised coping strategies. one reason for this could be linked to their self-identity as the issue of assumed identity plays a crucial role in their personal choice to disclose (or not disclose) their disability which in turn affects their access to teaching and learning support. all the participants in this study came from hearing families and they made use of spoken language. factors such as choice of communication, family environment, attending mainstream schools and a focus on the person as opposed to the impairment led the students to assuming a hearing cultural identity rather than a d/deaf cultural identity and electing not to disclose their hearing loss for fear of stigmatisation. in this way, they believed that other people would see them as normal and not as disabled. in addition to assuming a hearing identity, the participants did not self-advocate in order to negotiate for their communication needs (full accessibility in the teaching and learning environment). this is directly related to their hearing self-identity and the level of importance they attached to being invisible as opposed to extra-visible and drawing attention to themselves. the need to blend in and to be seen as normal seemed to be high. their personal choice of non-disclosure may be detrimental to their academic success as it limits the extent to which the university/disability unit is able to provide appropriate support. if the communication barriers that they experience in the teaching and learning environment become insurmountable or if their personalised coping strategies are insufficient or ineffective, this may lead to poor academic outcomes, affecting their future economic well-being. these findings offer practical value for the individual, the disability unit staff and the university as a whole: suggestions for the individual with a hearing impairment: develop and make use of skills to self-advocate by informing significant role players in their university education of their hearing impairment and be able to negotiate for the necessary accommodations. build effective relationships with lecturers, peers and staff from the disability unit to be able to interact appropriately and confidently and negotiate communication access. suggestions for the disability unit staff and the university: communicate to students with hearing impairment the benefits of and reasons for disclosure. ensure that students are fully informed regarding all aspects of supporting the communication and accessibility needs of students with hearing impairment, including up-to-date knowledge of the latest available assistive technologies, and remain sensitive to their needs. ensure that students with hearing impairment have as much knowledge as possible (concerning their rights as students with disabilities and the availability of support) to assist them to make good decisions about their communication and other support needs. have in place clear institutional guidelines concerning disclosure and confidentiality. make available financial and human resources to support the access needs of students with hearing impairment. the education of students with hearing impairment, using the oral approach for communication at mainstream schools, colleges and universities in south africa is an under-researched area. the following recommendations for future research are suggested: to identify the skills, strategies and awareness necessary for increased disclosure and self-advocacy and to identify the specific types of support that students with hearing impairment are receiving at universities throughout south africa, as well as their experiences, both negative and positive, in relation to these. it is of vital importance that students with a hearing impairment who have a hearing cultural identity be taught the skill of self-advocacy and self-representation from an early age so that they become comfortable and confident in disclosing their disability and not feel ashamed or stigmatised. in this way, they also learn to self-advocate for their communication accessibility needs, not having to rely on their personal coping strategies but on the support (both technological and human) provided by the institution, the disability unit, their lecturers, their tutors and their peers, which could lead to improved 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deaf education 12, 303–316. http://dx.doi.org/10.1093/deafed/enm018 abstract introduction research methods and design results recommendations conclusion acknowledgements references about the author(s) madira matjeni department of humanities education, faculty of education, university of pretoria, pretoria, south africa sarina de jager department of humanities education, faculty of education, university of pretoria, pretoria, south africa citation matjeni, m. & de jager, s., 2025, ‘cultivating special education teacher well-being: nurturing connection in professional learning communities’, african journal of disability 14(0), a1547. https://doi.org/10.4102/ajod.v14i0.1547 original research cultivating special education teacher well-being: nurturing connection in professional learning communities madira matjeni, sarina de jager received: 05 aug. 2024; accepted: 03 apr. 2025; published: 05 aug. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: special education teachers, especially those working with learners with autism spectrum disorders (asd), often face significant stress and burnout, affecting their well-being. this study explores teacher well-being in special education, motivated by personal experiences as a novice teacher in a special educational needs school. objectives: the study aimed to provide special education teachers with an opportunity to collaboratively examine and address well-being challenges and opportunities within a professional learning community, focusing on belonging, competence, and autonomy in learners with special educational needs (lsen) settings. utilising a phenomenological research design, the study involved eight teachers working with learners with asd. method: data collection methods included observations, semi-structured interviews, and focus group discussions to comprehensively explore their lived experiences. the findings highlighted the profound impact of challenging experiences on teacher well-being and the lack of sufficient support structures. participants emphasised the critical role of social support in enhancing teacher well-being. results: participants defined well-being as emotional, physical, and holistic, including social and family aspects. while working with learners with asd was meaningful, it also caused significant stress due to their complex needs. daily challenges shaped teachers’ professional identity and competence. connections with colleagues were valued, but a lack of institutional support and a restrictive school culture hindered well-being. when given autonomy, participants creatively co-developed well-being interventions, though support from management was essential for implementation. conclusion: this research highlights the essential role of fostering a sense of belonging and connection within professional learning communities for special education teachers. it calls for increased accountability in developing well-being support structures and comprehensive training programmes tailored to the needs of novice educators in special education. by nurturing connections, fostering competence, and ensuring autonomy, the well-being of special education teachers, particularly those working with learners on the autism spectrum, can be significantly improved. contribution: this study contributes to enhancing well-being support structures and training programmes for special education professionals. keywords: professional learning communities; teacher well-being; connection; special education teacher; autism spectrum disorders. introduction the extensive body of research on teacher stress and burnout over the past two decades highlights the growing concern regarding educators’ well-being (bottiani et al. 2019; cancio et al. 2018; zhang, zhang & hua 2019). teaching is widely recognised as a high-stress profession and teachers in special education face additional challenges because of the complexity of working with students with disabilities. special educational needs educators often report emotional exhaustion, depersonalisation, and reduced personal accomplishment, leading to increased turnover rates and a diminished sense of professional identity (botha, de jager & evans 2023). internationally, studies have examined stress in teaching alongside other high-pressure professions such as nursing, policing, and firefighting. many teachers struggle to maintain their commitment, sometimes losing their sense of purpose (granevald, vinterek & strömsten 2024). in contrast, research on teacher stress and burnout in south africa and the broader global south is still developing. special education teachers in south africa experience significant work-related stress because of inadequate resources, overcrowded classrooms, and a lack of institutional support (murangi, rothmann & nel 2022). sessions et al. (2017) found that limited career progression and low salaries further exacerbate stress levels, contributing to high rates of attrition. multiple factors contribute to poor teacher well-being, particularly in special education. studies highlight the emotional and physical demands of working with children with disabilities, who often require significant support in daily routines, emotional regulation, and learning (chen et al. 2023). teachers working with students diagnosed with autism spectrum disorder (asd) face additional challenges, including behavioural management difficulties, increased workload, and lower self-efficacy (love et al. 2019). research also indicates that teachers in special education schools frequently experience frustration, isolation, and depression, leading to burnout and high turnover rates (fu et al. 2022). teacher stress negatively affects job satisfaction, health, and retention rates. studies indicate that many special education teachers leave the profession within the first 5 years, with at least 50% resigning because of burnout (fu et al. 2022). the impact of teacher attrition is evident in schools, where high turnover rates disrupt learning environments and affect student outcomes. in addition, teachers experiencing compromised well-being struggle to bring creativity into the classroom, ultimately harming learner engagement (turner 2016). recognising the critical role of teacher well-being, international and local efforts have been made to develop support systems for educators. the job demands-resources (jd-r) model suggests that increasing job resources – such as administrative support, professional development, and peer collaboration – can mitigate stress (bakker & demerouti 2017). south africa’s policy framework, including the bill of rights and education white paper 6 (department of education 2001), has attempted to promote inclusive education and support for special needs educators. however, challenges remain in implementing effective community-based interventions and mental health support programmes sessions et al. (2017). over the past decade, awareness and diagnosis of asd have increased, partly because of enhanced diagnostic criteria and global access to medical knowledge (solmi et al. 2022). despite growing awareness, public understanding of asd remains insufficient, and even healthcare professionals often lack adequate training (davin 2020; hayat et al. 2019). this knowledge gap affects educators, who frequently navigate the complexities of asd with limited resources and training, further contributing to stress and burnout. teacher well-being is a critical issue that directly impacts educational outcomes. while international research has extensively examined teacher stress and burnout, studies focusing on special needs educators in south africa and the global south remain limited. the existing literature highlights significant job demands, emotional exhaustion, and high attrition rates among special education teachers. research methods and design this study employed a qualitative phenomenological design to explore the subjective well-being of teachers working with learners diagnosed with asd within a professional learning community (plc). a plc is a group of educators who collaborate to improve teaching and student outcomes through continuous learning and shared practices, through ongoing reflective dialogue, shared leadership, and continuous professional development (dufour 2004). the plc was used in the study as a platform for teachers to engage in discussions about their well-being and their experiences in teaching learners with asd. the plc provided teachers with a safe space for emotional support, professional reflection, and shared learning. it fostered collaboration, trust, and collective problem-solving, helping participants normalise their challenges and develop strategies for coping with stress. data collection spanned from april to july 2022 and involved three primary methods: focus group discussions, semi-structured interviews, and observations. the use of multiple data sources ensured triangulation, enhancing the study’s credibility. four focus group discussions were conducted over a 2-month period at a learners with special educational needs (lsen) school in pretoria, south africa. each session was scheduled after school hours to accommodate participants’ availability. the focus groups involved eight teachers, including both novice and experienced educators, with the researcher participating as an active participant observer. sessions took place in a classroom at the school and were guided by a structured protocol aligned with the research questions. the discussions were designed to foster dynamic engagement on teachers’ subjective well-being and their experiences within the plc. the discussions focused on the following key areas: teachers’ experiences of working with learners with asd, institutional efforts to support teacher well-being, the impact of teaching on personal and professional well-being, and experiences and perceptions of plc participation. each session lasted between 23 and 56 min. the researcher facilitated and moderated the discussions, ensuring that all voices were heard. observations were recorded on participant engagement, body language, tone, and group dynamics to capture non-verbal cues that complemented the verbal data. all sessions were audio-recorded and transcribed verbatim for analysis. three semi-structured interviews were conducted with selected participants who had either missed a focus group session or had provided insights that required further elaboration. each interview was scheduled for after school hours, lasting approximately 45 min. the interviews followed a flexible format, allowing for open-ended responses while maintaining a structured flow based on pre-determined questions. the interview questions were guided by the following research objectives: how can a plc enhance the well-being of special education needs (sen) teachers, what challenges and support structures exist for teacher well-being, and how do sen teachers perceive their role in promoting well-being? additional follow-up questions were posed as needed to clarify or expand upon points raised in the focus group discussions. the interviews were audio-recorded with participants’ consent, transcribed, and cross-checked against recordings to ensure accuracy. observations were integrated as a third data collection method to provide contextual depth to the focus group and interview data. these took place during all four focus group discussions, with the researcher assuming the role of a participant observer. observational data focused on participants’ level of engagement and participation, interpersonal interactions and collaboration within the plc, and non-verbal cues such as facial expressions, gestures, and body language. field notes were taken during and immediately after each session to ensure accuracy. while observational data contributed to the broader understanding of teacher well-being, it was primarily used for triangulation and was not separately reported in the findings. given that the researcher was also a teacher at the research site, careful measures were taken to mitigate potential coercion. participation was entirely voluntary and all participants were explicitly informed that their decision to take part or withdraw at any time would have no impact on their professional standing. to further ensure openness, clear communication emphasised that there were no right or wrong responses, and participants were encouraged to share their experiences freely. confidentiality was strictly maintained and all data were anonymised to prevent any identification of individual responses. these steps helped establish an environment where participants felt comfortable expressing themselves without concern for undue influence. participants the study included seven teachers from an sen school in pretoria, south africa, all of whom taught in the asd phase. participants were purposefully selected based on their experience in teaching learners with asd. their qualifications ranged from postgraduate certificates in education to bachelor of education degrees, with specialisations in foundation phase, early childhood development, intermediate and senior phase, and further education and training phase. teaching experience varied, with participants having between 1 and 10 years in general teaching, while experience specifically in the asd phase ranged from less than a year to 5 years. the study aimed to capture the lived experiences of both novice and experienced teachers, ensuring a diverse perspective on well-being within this specialised teaching context. data analysis interpretative phenomenological analysis was employed during this study as a data analysis tool, allowing us to explore the participants’ personal experiences in depth (smith, flowers & larkin 2009). one of the key features of interpretative phenomenological analysis is that it enables researchers to gain an understanding of how participants make sense of their experiences. this was achieved using detailed, open-ended interviews, which were then analysed using a rigorous, step-by-step process: organisation: focus group discussions, in-depth interviews, and observations were used to collect data with the participants. we then transcribed the audio-recorded interviews and focus group discussions and analysed them in microsoft word. this allowed for the organisation of the data into smaller pieces, which made it easier to interpret and understand. perusal: we examined the collected data several times to understand what the data contained as a whole. we read and reread the data, ensuring accuracy between the audio-recorded interviews and focus group discussions and the transcripts. this process is known as data reduction, and it is an important step in data analysis. classification: we classified the data by dividing them into themes and sub-themes. themes refer to broad categories that provide a general overview of the subject matter, and sub-themes refer to narrower categories that offer more specific information about the theme. synthesis: we searched for connections across themes to create a more comprehensive understanding of the topic, aiding in creating a well-rounded argument. induction: we adopted a qualitative approach informed by both existing literature and empirical data. as researchers, we first reviewed relevant literature to frame our understanding of the topic, followed by the collection of primary data through interviews and focus group discussions to explore participants’ perspectives in depth. the data were then analysed using interpretative phenomenological analysis (ipa), which enabled us to examine how participants made sense of their experiences while allowing themes to emerge organically from the data.after thoroughly investigating the primary and secondary sources of information, we developed our findings, conclusions, and recommendations. ethical considerations ethical approval for this study was granted by the research ethics committee of the faculty of education at the university of pretoria (edu152/21). the research adhered to the three core ethical principles outlined in the belmont report: beneficence, respect for persons, and justice. these principles guided the study to ensure ethical integrity throughout the research process. beneficence was upheld by prioritising the well-being and safety of participants. measures were taken to minimise potential risks and protect their rights. respect for individuals was maintained through informed consent and the safeguarding of vulnerable groups. given that the study took place in a school setting with students with disabilities, additional precautions were implemented to protect participants. pseudonyms were assigned to participants, teachers, and the school itself to ensure anonymity. an asterisk (*) was placed after pseudonyms to indicate that they were not the individuals’ real names. justice was ensured by maintaining fairness in the distribution of benefits and burdens among participants. permissions were obtained from relevant stakeholders, and key ethical considerations – including informed consent, voluntary participation, anonymity, and confidentiality – were thoroughly explained and implemented. given the involvement of a school for learners with disabilities, extra care was taken to protect participants and uphold data accuracy and integrity. the application of ethical principles, participant protection, and data integrity remained a priority throughout the study, ensuring ethical rigour in research involving vulnerable populations. results this section presents key insights derived from focus groups and semi-structured interviews, employing thematic analysis to identify core themes. the findings explore participants’ conceptualisation of well-being, meaningful teaching experiences, challenges hindering well-being, and available support mechanisms. teachers’ perceptions of well-being participants described well-being as a multifaceted concept encompassing emotional, physical, and social dimensions. michael* explained, ‘it’s emotional and physical, like how you’re feeling … your body… and also emotional, on the inside’, while athambile* emphasised inner peace, stating, ‘well-being has to do with your inner being … your emotion, of course … your inner peace’. onu* suggested a holistic perspective, asserting, ‘it must be a holistic thing. the whole of you must be okay’. these reflections align with research on job satisfaction and emotional resilience (deci & ryan 2012; mertler 2016), reinforcing the need for supportive professional environments. meaningful experiences and well-being participants highlighted how positive teaching experiences contributed to their well-being, particularly through a sense of purpose and emotional connection with learners. anele* stated, ‘it gives you a sense of self-worth; you’re also contributing to your household’, while jessica* noted the stability employment provided, saying, ‘wow, i got a job! … i’m gonna get money monthly!’ small achievements among learners were deeply fulfilling, as leo* described, ‘with each little achievement these learners go through, for you, it’s a big hoo-ha’. the reciprocal nature of well-being was evident, where participants found emotional sustenance through meaningful teacher-student interactions. these insights align with basic psychological needs theory, which emphasises autonomy, competence, and relatedness as key motivators in professional fulfilment (ryan & deci 2000). challenges: emotional and physical exhaustion despite these positive experiences, teachers faced significant emotional and physical exhaustion. margaret* recalled, ‘back in 2018 … a child had a meltdown, and he fractured my carpals… they’ve attacked me with plastic knives … it just happens so quick’. michael* described the prolonged stress, ‘i’ve been sicker … constantly stressing about things the children do … i have to be aware of’. participants also noticed emotional exhaustion because of deep attachments with learners. leo* shared, ‘you tend to get too attached… you know each learner and their socio-economic background’. these findings align with previous research on compassion fatigue and burnout in special education (fu et al., 2022; lee, lee & jang, 2021), highlighting the urgent need for structured mental health support and stress management training. school culture and institutional support a prevalent theme was the disconnect between formal well-being initiatives and their practical implementation. participants described a culture of ‘window-dressing’, where surface-level efforts masked deeper structural issues. anele* noted, ‘by the time they come to our schools, the principal and hods always take them to the nicest classes and the nicest teacher’, while leo* added, ‘and the well-behaved learners’. although a wellness committee existed, it was perceived as ineffective. onu* stated, ‘there is a wellness committee, but… they are not featuring … for the well-being of teachers’. this mirrors broader concerns in educational research that emphasise the disparity between policy and practice in well-being frameworks (naidoo 2019; park & shin 2020). teacher identity, competency, and imposter syndrome many participants struggled with imposter syndrome, questioning their professional competence. leo* admitted, ‘you tend to also second guess yourself’, while jessica* noted, ‘i’m very anxious … about my personal growth’. the lack of sufficient professional development opportunities further exacerbated self-doubt. this aligns with literature on imposter syndrome, which identifies self-perceived inadequacy as a key stressor among educators (huecker et al. 2022). mentorship and structured peer support within plcs emerged as potential interventions to mitigate these concerns. professional learning communities as a support mechanism professional learning communities played a pivotal role in fostering emotional resilience and professional growth. participants valued the shared experiences, with margaret* describing it as ‘a safe space’ to express concerns without fear of judgement. the plc encouraged self-reflection, with onu* realising, ‘you need to look after yourself to be able to look after others’. jessica* highlighted the transformative potential of plcs, stating, ‘growth is not just academic; it’s also about inner peace and self-care’. these insights align with broader research advocating for plcs as essential tools for sustaining teacher engagement and professional resilience (molina & lopez 2019). facilitating teacher well-being participants proposed various strategies to enhance well-being, including recognition from school leadership, improved staffroom environments, and dedicated funds for well-being initiatives. jessica* suggested a peer support group, while michael* recommended creating a ‘chill corner’ for teachers to decompress. anele* emphasised the need for budget allocation, stating, ‘if we can maybe put in the extra amount of budget … i think it would go forward’. these recommendations align with research emphasising the role of institutional recognition, team-building, and support systems in enhancing teacher well-being (brodie 2021; gorman 2019). this study highlights the complexities of teacher well-being within special education, emphasising the interplay between meaningful experiences, emotional challenges, and institutional support. while plc emerged as a crucial support structure, systemic interventions – such as leadership accountability, structured mentorship, and dedicated mental health resources – are essential for long-term sustainability. addressing these factors holistically can create a more supportive and fulfilling work environment for educators, ultimately benefiting both teachers and learners. recommendations the findings revealed the need for sen education teachers who experienced limited opportunities to connect with colleagues to engage in critical conversations. therefore, we recommend opportunities for sen teachers to engage in critical conversations to explore the various issues that teachers face in this field. critical conversations open dialogue for teachers, offering different perspectives on an issue and allowing expansion and growth (harste 2000). the core values of critical conversations are engagement, learning opportunities, and resolving issues within a community. critical conversations should take place within plcs, opening paths for reflection on the part of teachers (cox et al. 2018). reflections alone do not suffice in these discussions; they also need to be critical, requiring teachers to be mindful or ‘critically conscious’. these discussions provide teachers with new ways of thinking about old problems and allow for innovative solutions (vetter, schieble & martin 2021; zúñiga, lopez & ford 2012). they also help build stronger relationships with colleagues. the data revealed that well-being support structures were in place but underutilised. this is concerning as it suggests that schools are not effectively measuring or taking accountability for teacher well-being. the study recommends that lsen schools monitor the effectiveness of support structures to track teacher retention rates. if retention rates increase after supports are put in place, then it is likely that the supports are adequate. another way to measure the effectiveness of support structures is to survey teachers before and after support is put in place. if there is an increase in satisfaction levels, the supports are likely adequate. another recommendation is for the school management team to acknowledge the emotional needs of sen teachers and support them adequately by making provision for professional support through the school’s budget. support from school management and the school governing body (sgb) is key to retaining well-trained, talented teachers. the study recommends training opportunities and team-building activities to foster connections among sen teachers. this will help teachers feel more supported and appreciated for their valuable contributions. in addition, giving sen teachers more autonomy will help improve job satisfaction levels. there is a lack of training for teachers who work with students with disabilities at all levels of education and teachers with special needs have little or no training in teaching and coping with learners with disabilities. we therefore recommend that the higher education sector aim to improve this gap, which results from burnout, stress, and a lack of experience, as it leads to detrimental health issues. the lack of training in this field fails sen teachers and learners. for this reason, we further recommend that all undergraduate teaching qualifications include modules based on learners with disabilities to open pathways for teachers, giving them future opportunities to work with learners with special needs. conclusion this study underscores the critical role of sen teacher well-being in shaping the overall health of schools and the quality of education provided to learners. the findings highlight both the meaningful aspects of teaching learners with asd and the substantial challenges, including emotional and physical exhaustion, inadequate institutional support, and impostor syndrome. while plcs offer a valuable space for emotional support, collaboration, and professional growth, systemic barriers continue to impact teacher retention and job satisfaction. given that sen teachers are particularly vulnerable to high levels of stress and burnout, it is imperative to establish and maintain strong support structures that prioritise their well-being. a unique contribution of this study lies in its application of plcs as tools to foster teacher well-being, offering a collective approach to stress management and professional resilience. ensuring teacher well-being has far-reaching implications. when teachers are happy and healthy, they are more effective in the classroom, fostering better learning outcomes. furthermore, well-supported teachers are more likely to remain in the profession, reducing turnover and promoting stability for both learners and schools. investing in teacher well-being can also attract and retain skilled professionals in special education, addressing the ongoing shortage of trained educators. in addition, creating a culture of support for teachers generates a positive ripple effect throughout the school community, enhancing engagement, collaboration, and overall morale. the study’s strengths lie in its qualitative approach, which captures the lived experiences of teachers and provides insight into the role of plcs in fostering well-being. however, limitations include the small sample size and the focus on a single school, which may limit broader applicability. moving forward, targeted professional development in special education, institutional accountability, and the integration of mental health support into school policies are necessary steps to sustain teacher well-being. future research should explore the long-term impact of plcs on teacher retention and job satisfaction across diverse educational settings. by prioritising teacher well-being at both school and policy levels, sustainable improvements in special education can be achieved, ultimately benefiting both educators and learners. acknowledgements this article is partially based on the author’s dissertation entitled ‘exploring teachers’ well-being through a professional learning community’ towards the degree of master’s in the exploring teachers’ well-being through a professional learning community in december 2022, with supervisor sarina de jager. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.m. conducted the research and writing for her master’s dissertation under the supervision of s.d.j., who provided conceptual guidance, methodological oversight, and critical review. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability data sharing is not applicable to this article, as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references bakker, a.b. & demerouti, e., 2017, ‘job demands–resources theory: taking stock and looking forward’, journal of occupational health psychology 22(3), 273. botha, m., de jager, s. & evans, r., 2023, ‘21st-century south african teachers in turbulent educational waters’, 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psychological capital and occupational stress on teacher burnout: mediating role of coping styles’, the asia-pacific education researcher 28, 339–349. https://link.springer.com/article/10.1007/s40299-019-00446-4 zúñiga, x., lopez, g.e. & ford, k.a., 2012, ‘intergroup dialogue: critical conversations about difference, social identities, and social justice: guest editors’ introduction’, equity & excellence in education 45(1), 1–13. https://doi.org/10.1080/10665684.2012.646903 abstract introduction research methods and design results discussion conclusion acknowledgements references footnote about the author(s) alister munthali centre for social research, school of social sciences and humanities, university of malawi, zomba, malawi arne eide department of health research, sintef digital, oslo, norway stine h. braathen department of health research, sintef digital, oslo, norway peter m. mvula palm consulting limited, zomba, malawi malcolm maclachlan department of psychology & assistive living and learning institute, maynooth university, maynooth, ireland olomouc university social health institute, palacky university, olomouc, czech republic department of psychology and mental health, university of cape town, cape town, south africa hasheem mannan health sciences centre, school of nursing, midwifery and health systems, university college dublin, dublin, ireland citation munthali, a., eide, a., braathen, s.h., mvula, p.m., maclachlan, m. & mannan, h., 2025, ‘exploring challenges experienced by older persons in accessing health services in malawi’, african journal of disability 14(0), a1712. https://doi.org/10.4102/ajod.v14i0.1712 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. original research exploring challenges experienced by older persons in accessing health services in malawi alister munthali, arne eide, stine h. braathen, peter m. mvula, malcolm maclachlan, hasheem mannan received: 27 mar. 2025; accepted: 21 july 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: malawi, like other developing countries, is not prepared to adequately address the health needs of older persons. objectives: this article explores challenges older persons experience in accessing health care. method: this article is based on data from two large. conducted in blantyre, phalombe, dowa and rumphi districts, the equitable study examined self-reported barriers. the geohealthaccess study examined geographical barriers, conducted in blantyre and phalombe. a sub-sample of 338 (17%) older persons of the 1991 respondents in the equitable study is used in this article. respondents were asked to identify factors that made it difficult for them to access health care. sixty-six in-depth interviews and two focus group discussions with older persons were conducted to obtain in-depth information about barriers to accessing health care. results: barriers experienced by older persons in accessing health care included being unable to pay to for services at fee paying health facilities; failure to pay for transportation; long distances to health centres; mountainous terrains; having severe rheumatism; living alone; poor attitudes of health workers; and shortage of staff, medicines and equipment. conclusion: to address these challenges, there is need to have adequate health workers with knowledge of diseases and conditions experienced by older persons and the introduction of outreach health services targeting them. contribution: poverty at individual level and health system factors are major barriers to accessing health care by older persons. there is a need for the development and implementation of strategies to better improve access for older persons. keywords: malawi; older persons; health care access; challenges; barriers; disability; poverty. introduction ageing is a global phenomenon that requires countries to address the health and care needs of older people, defined as persons 60+ years-old (un 2022). this is a particular challenge for lowand middle-income countries (lmics) struggling with lack of resources, insufficient and fragile health and care services (fanelli et al. 2020). to build sustainable health and care systems in lmics, data and knowledge are needed to ensure that the needs of older persons in lmics are met in ways that are adapted to context and not mere copies of existing health and care systems in other parts of the world (goodman-palmer et al. 2023). understanding older people’s needs and utilisation of health care is one important factor within this knowledge need. the ambition of this article is to contribute to building knowledge on challenges older people face in seeking health care in malawi, building on comprehensive cross-disciplinary research on access to health care in the country. the rapid increase in the population of healthy older people contributes to communities in many ways; for example, they can be employed or they can be involved in volunteer work (rowe & fried 2019). families with older people also benefit through financial support and being assisted with household chores, such as childcare (undesa 2017). while such contributions to society by older people are appreciated, the major challenge is that nearly all countries, regardless of their socio-economic status, are poorly prepared to effectively meet the increased health care needs of older people (helpage international 2017; rowe & fried 2019). in developing countries, including malawi, the general population already experiences various challenges in accessing health services, including the critical shortage of health workers, inadequate funding, shortage of medicines and equipment and long distances to health facilities (chukwudi et al. 2015; government of malawi 2017). long waiting times also characterise public health facilities with patients waiting for their turn to see the health provider. this is particularly challenging for older persons (hillbrom 2016). in general, older people experience a wide range of health problems, often resulting from chronic illnesses, with symptoms such as back and neck pain. while older people have equal rights to access health services for the health problems they experience, it has been observed that they use health services less frequently compared to younger people (world health organization [who] 2016). there is an urgent need to effectively plan how health needs of older people can best be addressed in africa’s health systems. the challenge, as argued by chukwudi et al. (2015), is that in sub-saharan africa the availability and utilisation of health services among older people is poorly reported, and existing health management information systems do not report access to health services by age. it is only in 2015 that malawi started paying greater attention to older persons with the development of the national policy for older persons (mogcdsw 2015). the vision for the current health sector strategic plan (hssp) for malawi 2023–2030 is to achieve a state of health for all the people of malawi [regardless of age] that would enable them to lead good and productive life (ministry of health 2023). malawi’s hssp therefore takes on board the sustainable development goals, especially goal 3 – ensure healthy lives and promote wellbeing for all ages. while the hssp targets all persons regardless of age, there are no specific interventions in the hssp targeting older persons. this article explores the challenges that older persons in malawi experience in accessing health services. there are a few studies that have been conducted among older persons in malawi, but these have not focused on access to health services. this article is based on data from two large studies, namely the equitable project and the geohealthaccess project, where qualitative and quantitative data were collected over the period 2009–2017. the overall objective of both projects was to explore the challenges that vulnerable populations, including older persons, experience when accessing health care. this article has been written in honour of prof. leslie swartz, who played a very important role in both the equitable and the geohealthaccess studies upon which the article is based. in the equitable study, prof. swartz was part of the team that conceptualised and developed the proposal, and after funding was obtained, he provided overall leadership of the qualitative component, including the training of research assistants and supporting country teams in malawi, namibia, south africa and sudan. he also supervised students, notably those who completed their phds using equitable data. thereafter, prof. swartz supported country teams on the equitable study to draft and finalise manuscripts, which were eventually published, ensuring that the data reach those who need it. besides this, in the geohealthaccess study, he was part of the project’s advisory board and contributed to the development of the qualitative methodology. we would like to thank prof. leslie swartz for his overall contribution to the field of disability studies research and, most importantly, for our collaboration and friendship with him over the past several decades. research methods and design context malawi is divided into three regions: northern, central and southern. across the regions, four districts were chosen for the equitable project: blantyre and phalombe districts in the southern region, ntchisi in the central region and rumphi in the northern region. blantyre is an urban area and the commercial capital of malawi with a projected population of 1 406 236 people in 2024 (national statistical office 2017). the poverty rate for blantyre is estimated at 40%. phalombe is a relatively poor district where 64.5% are poor. it has a projected population of 502 825 people in 2024 and is one of the districts with a very high population density at 225 persons per km2. phalombe is mostly inhabited by the lomwe people. ntchisi has a population of 376 921; 41.4% of the people are poor and it is mostly inhabited by the chewa people. rumphi’s population is estimated at 259 391 and 37.3% of the people in this district are poor. the tumbuka people are mostly found in rumphi. rumphi, ntchisi and phalombe are mostly rural areas, and their main source of livelihood is subsistence agriculture. these districts were chosen taking into consideration the cultural diversity prevailing in malawi. in each district, the district health office was the point of entry. within each district, two health facilities were chosen: one belonged to the ministry of health, while the other belonged to the christian health association in malawi (cham), a network of health facilities owned by churches. the ministry of health provides free health services in its health facilities, while cham charges user fees. there is no overlap in the catchment areas of cham and ministry of health facilities. in order to ensure that the payment of user fees does not constitute a barrier to accessing health services, the ministry of health has established service level agreements (slas), which have been signed between district health offices and cham facilities (ministry of health 2011). the slas aim at removing financial barriers in accessing health facilities, especially among the malawian poor (moh [mspa] 2014). eight health facilities were selected with the help of the district health offices as follows: nthenje and lura health centres in rumphi, mkhuzi and khuwi health centres in ntchisi, chitekesa and mwanga health centre in phalombe and chileka seventh day adventist (sda) hospital and chimembe health centre in blantyre (swartz et al. 2011). during the geohealthaccess study, two facilities where the equitable study was implemented, namely chimembe in blantyre and chitekesa in phalombe, were selected. data were collected in the catchment areas of these health facilities. study design the equitable study had three components, namely policy analysis using the equiframe, a comprehensive qualitative study and a large household survey. this article uses data from the qualitative and quantitative components of the equitable study. a total of 244 idis were conducted in the equitable study: 81 were carried out in blantyre, 63 in phalombe, 50 in ntchisi and another 50 in rumphi. more females (142) were interviewed than males (102). these idis were performed with a wide range of informants, namely users of health services, non-users of health services and providers of health services (munthali et al. 2019). of the 244 idis, 66 were conducted with older men and women whereof 45 were with females, and 21 with males. table 1 summarises the idis that were conducted in the equitable study with older persons aged 60-years-old and above. table 1: older persons interviewed in the equitable study. during these idis, older persons were asked whether they accessed health care in the same way as everyone else in their family or community, the factors that made it difficult for them to access health care and whether they experienced these factors.1 in the geohealthaccess study, two districts and two health facilities from the equitable sample were selected for further in-depth explorations through focus group discussions (fgds), of which two fgds were carried out, one with older women and the other with older men. the quantitative component of the equitable project involved a survey in the catchment areas of the eight sampled health facilities. ten research assistants, comprising six females and four males, were recruited and trained for 6 days. four of the research assistants were persons with disabilities. in each catchment area of the eight health facilities, five enumeration areas (eas) were randomly selected, and a listing of households was conducted. in each ea, the household listing involved screening for activity limitations using the washington group on disability statistics’ six questions on activity limitations, followed by a random selection of households. in each ea, 40 case households and 10 non-case households were randomly sampled. case households were those with members with disability, while controls were households without members with disability. three questionnaires were administered: one was for the household, and then the second one was for the individual with a disability and a control in the household who did not have a disability. for this article, we looked at one question that was contained in both the individual or case and control questionnaires: considering your own experience, tell me whether the following make it difficult for you to get health care [refer to table 2 for responses]: [read out the alternatives, and show card. circle only one code for each row]. (van rooy 2018) table 2: barriers included in the equitable survey. a total of 1991 respondents participated in the survey: 16.8% (338) of these respondents were aged 60 or more. just more than half of the respondents (53.9%) were older persons with disabilities, while the rest (46.1%) were without disabilities. scheppers et al. (2006) performed a study among ethnic minorities and classified the barriers they experience in accessing health care into three levels: (1) patient level, where factors related to patient characteristics such as sex, ethnicity and income play a role; (2) provider level, where factors such as sex, skills and attitudes of the provider play a role; and (3) system level, where characteristics such as policy, organisational and structural factors play a role (scheppers et al. 2006). this framework will be used because when barriers experienced by older persons in malawi are analysed, one finds that they are similar to those found by scheppers et al. (2006). ethical considerations both studies were approved by the national health sciences research committee, a local institutional review board whose secretariat is in malawi’s ministry of health. the equitable study was approved on 06 january 2009 by the national health sciences research committee, an ethics committee whose secretariat is in malawi’s ministry of health, with ethical clearance number 09/01/1011. the geohealthaccess study was approved on 01 november 2017 by the national committee for research in the social sciences and humanities of the national commission for science and technology with ethical clearance number p10/17/217. all the study participants provided consent before the interviews were conducted. participation in this study was voluntary: participants were told about the purpose of the study, and while their participation was important, they were also informed that they were free to withdraw at any time. results the results in this article will be presented using scheppers et al.’s framework. barriers to accessing health care among older persons this study found that most older persons suffered from general body and joint pains, which made it difficult for them to perform activities, including walking to health facilities for health care. some older persons reported accessing health care in the same way as other people: ‘i access health care the same way as everyone else in the family and as everyone in the community.’ (62-years-old, female, with mental illness, blantyre) however, most older persons reported that they experienced some challenges in accessing health care. we discuss the barriers that older persons experience when accessing health care according to scheppers et al.’s (2006) classification. patient -level factors patient-level factors that presented barriers for older people to access health care included being poor, long distances to health facilities, not being able to sit on a bicycle, living alone, not being sick enough and incompatibility with modern medicines. being poor most older people reported that they were poor; hence, they could not access health services at a facility belonging to cham, as such facilities charge user fees, unlike public facilities where services are provided free of charge: ‘when someone is sick and does not have money that means he cannot access health care services because the nearest [health facility] is a cham facility where patients can only access services after they have paid for them.’ (64-year-old, male, blantyre) this made some older persons, for example, a 61-year-old informant to just purchase medicines from local shops, and this was cheaper than seeking care at a cham facility. it is not only older persons who have problems paying for health care at the cham facilities, there are many people who experience this problem: ‘most people in the area are poor and this affects their lives more especially the people with disabilities when they don’t have money and are sick, it is hard for them to hire a car or oxcart to and from the facility.’ (88-years-old, male, visual impairment, blantyre) public health facilities in malawi also refer patients to cham facilities for further treatment. for example, older people reported that patients at lura heath centre in rumphi are referred to livingstonia mission hospital, which is a cham facility and situated very far. lura health centre does not provide an ambulance to take people to livingstonia mission hospital: livingstonia mission hospital provides ambulance services at mk5000 to transport a patient from lura health centre to livingstonia mission hospital. many people cannot afford to pay this for transport. table 3 [line 11] shows that 56% of older people without a disability mentioned that the cost of the visit to the health facility was not a problem for them to access health services. however, a much lower proportion of older persons with disabilities, at 49%, reported that the cost of the visit was not a problem. table 3 [line 18] also shows that 39% of older people with a disability and 30% of older people without a disability experienced problems affording transport costs. among older people with disabilities, 32.8% and 21.7% had serious or surmountable problems with the cost for accessing health care and transport cost, respectively. corresponding figures for people without disability were 16.5% and 8.8%. table 3: factors that make it a problem for older persons to get health care (n = 338). every patient is supposed to have a health passport where a doctor or medical assistant will record the diagnosis and treatment that has been given. this health passport is sold in public health facilities. some older persons reported that because they were poor, they could not afford to purchase a health passport; hence, they were sent back to look for money and buy a health passport: ‘some time back i had malaria and i went to the health facility for treatment. i was asked to buy a health passport since i did not have one. i had no money to buy a health passport and was sent back to look for the money for the health passport before being given treatment so that the doctor should record the details. i tried pleading with the health worker who was sending me back but she refused and told me to go away and come back if only i buy the healthy booklet …’ (70-year-old, female, no schooling, farmer, phalombe) the survey shows that there were slightly more older persons with a disability (72%) who reported that they had no problems with necessary or requisite documents than older persons without a disability at 68%. the necessary documents in this case meant having health passports. these results demonstrate that there is hardly any difference between older persons with and without disability. long distances to health facilities some older persons reported that they stayed very far from health facilities. these older persons found it difficult to walk to such distant health facilities during illness episodes because of numerous factors, including being disabled, experiencing a lot of pain because of conditions such as rheumatism and being weak because of old age: ‘… i am very old and have so many problems especially in walking. i cannot walk a long distance, i feel pain the whole body so when i am sick and with the long distance i cannot manage to walk so i just stay at home and find that another day i am able to wake up and life goes on like that. sometimes when my grandchildren have money they buy tablets for me from the groceries and i get well – when they have no money i just stay at home.’ (61-year-old, female, phalombe) a 90-year-old man in blantyre reported that together with his wife, they do not access health services although the health facility is nearby because they are very old. in some catchment areas, for example, around chimembe health centre in blantyre, older people, including those with disabilities, reported that the place is hilly, and this made it very difficult for them to go for health care services. one 83-year-old female informant in blantyre reported that older persons fail to access health care because of a lack of strength in their bodies and they cannot walk the 18 km distance to the facility to access health care. there is also no public transportation system in the area, which forces many older people to use locally available treatment options. some older persons reported that the long distances are exacerbated by the fact that transport is not provided for patients from the communities when they are going to health facilities. table 3 [line 1] shows that most older persons experienced the problem of transport from home to the health facility. furthermore, among this sample of elderly, more people with a disability (70%) than without a disability (59%) reported this. almost half of older respondents (49.5%) reported serious or surmountable problems in getting transport, while this figure was down to 35.6% for people without disability. in some cases, older people resort to using traditional medicines during illness episodes because these can easily be found within the community and are cheap, instead of walking long distances to health facilities: ‘[l]ong walking distances make it difficult for a person to access health care. because of old age, many older persons find it difficult to go to the health facility. instead, they prefer using traditional medicines because they are cheaper and easy to find’ (69-year-old, female, nthenje health centre, rumphi) not being able to sit on a bicycle bicycle is one of the common means of transport in the study sites. those who do not have bicycles often use bicycle taxis. however, numerous older people reported that they were non-users of modern health care because they could not sit on the bicycle: ‘transport is also one of the major problems the health facility has. there is no transport to fetch people who have difficulties in walking from their areas to the hospital. the only means of transport which is common in the area is bicycle taxis but with my condition i cannot use it.’ (80-year-old, female, informant, blantyre) ‘i have been experiencing body pains, but nobody escorts me to the hospital for healthcare services. the people around just buy for me some tablets from groceries because they cannot carry me on their back and on the bicycle because i have dizziness when on the bicycle so this makes it difficult for me to access healthcare services and for others to escort me to the hospital.’ (70-year-old, female, blind, phalombe) while people, including relatives, may want to take older people to health facilities, their failure to sit on a bicycle carrier makes it difficult for them to access health care. living alone some older people lived alone. many of them were not able to go to the health facility alone. the absence or unavailability of people who could take them to a health facility made it very difficult for them to access health care: ‘there was a certain time when i had malaria and i failed to go to the hospital because there was nobody to cycle me to the facility and i just bought some panadols at the nearest market just to kill the pain.’ (60-year-old, female, informant, phalombe) ‘i experience many problems … i have a financial problem, the health centre is very far about 15 km away and there is no one who can escort me to go to the health facility.’ (90-year-old, female, blantyre) some older persons could not travel to the health facility alone because of the disability they had. for example, a 70+ year old blind woman could not travel to the health facility alone without being escorted. another 85-year-old woman in phalombe reported that the health facility was very close, but she could not walk there because she suffered from severe rheumatism: ‘the main problem is old age and lacking somebody to carry me to the health facility for the services. rheumatism is the only problem that makes me to fail access the services because my legs pain me so much that i cannot manage walking to the facility besides being near. my eyes also have some problems and i am not able to see properly due to same old age.’ (85-year-old, female, phalombe) one 64-year-old man with epilepsy in phalombe reported that when he had seizures, people found him and took him to the health facility for help. he added that at one time, he fell on fire and his aunt found him still unconscious and shouted for help. his neighbours then took him to the hospital. he explained that although he stayed alone, he needed someone to escort him to the hospital because of his condition. while this 64-year-old man was helped by neighbours, there were others with disabilities who were not helped during illness episodes. a 73-year-old woman with mental illness in blantyre reported that when she was sick, her relatives left her in the house and they failed to send her to the hospital claiming that they were tired of her. provider-level factors poor treatment of elderly persons by health workers poor attitudes of health workers towards older people were the major barrier at the level of service providers. in most cases health workers treat their patients in a friendly manner. however, some older persons in this study reported that some health workers did not treat them all that well. for example, an 80+-year-old woman in phalombe reported that when elderly persons go to the hospital, they are treated in an unfavourable manner by health workers. as a result, some resort to traditional medicines during illness episodes instead of seeking care from the health workers. a woman older than 65 years (exact age not known) in ntchisi reported that whenever she was sick, she did not go to mkhuzi health centre, which is closer to her home village. she used the traditional medicines because of the attitude of the medical assistant, who she says is very rude in treating patients: ‘last year i suffered from malaria and went to mkhuzi health centre to seek treatment. when i got into the medical assistant’s office, i was disappointed to hear from the medical assistant that the medicines are for the youth not the elderly persons. despite this, i received the treatment but i decided to stop going to the hospital since that time up to now, i do not go.’ (65+ year-old, female, informant) ‘there are so many obstacles that i face when seeking health care. i went to the facility another time when i had abdominal pains. when i explained the problem, the doctor said that ndiukalamba umenewo [this is old age]. i felt sorry for being discriminated.’ (83-year-old, female, informant, ntchisi) ‘the minor obstacle [i face] is the behaviour of some health workers: they are rude and harsh, so the community is always not comfortable with such personnel. a few health workers at chitekesa health centre are rude and harsh and this is the obstacle i face at chitekesa.’ (60-year-old, male, phalombe) there were also some older people who reported that some health workers are rude and harsh, and this is an obstacle not only for older people but for other population groups as well. table 3 shows that 40% of the older people without a disability and 41% of the older people with a disability mentioned that they experienced negative attitudes from health workers, with 15% and 14%, respectively, reporting this as a serious problem. table 3 further shows that 24.1% and 17.1% of elderly without disability and 30% and 21.1% of elderly with disability had experienced being previously badly treated or having tried but been denied health care access. system-level factors shortage of staff the problem of shortage of staff does not affect older persons only, it is a problem that affects all the patients. in this study, older persons reported that there was in general a shortage of staff in health facilities, and this was reported in all the four districts where the equitable study was conducted: ‘there is shortage of staff. there are only two members of staff at lura health centre who serve a large population of patients. this results into congestion at the facility.’ (71-year-old, male informant, lura health centre, rumphi) ‘there are not enough members of staff and this makes patients wait on the benches for long hours because a lot of patients seek health services from the facility but health workers are just few of them …’ (64-year-old, male, with epilepsy, phalombe) a 70-year-old woman in rumphi in the catchment area of mzokoto health centre also reported that there is only one nurse and a medical assistant. she explained that sometimes the medical assistant goes to rumphi district hospital for a workshop: the nurse becomes very busy as she has to provide all the services. this makes the patients to take a long time to get the treatment. in some cases, the facility is closed; hence, the facility does not provide services. the non-availability of staff is one of the major problems experienced by older people, as can be seen in table 3: 58.9% of the older people without a disability and 68.9% of the older people with a disability reported this as something that made it difficult for them to access health care. shortage of medicines in all four districts, older persons reported that there was a shortage of medicines in the health facilities and this was especially in the public health facilities: ‘shortage of drugs at the facility make it difficult for a person to access health care because when one is suffering, he or she needs drugs to get cured and if there are no drugs, it means that a person may either die or continue suffering.’ (70-year-old, hearing impaired, ntchisi) the shortage of medicines in public health facilities made some older people to think of accessing private health facilities where medicines are available: ‘if only i had money, i could go to private clinics like malamulo [in blantyre] for treatment. this health centre [here] has inadequate drugs for several diseases. most of the people whose financial status is good do access health care there but i am failing to access.’ (90-year-old, male, blantyre) many informants reported that there is a shortage of medicines in the facility. one 60-year-old man in ntchisi reported that for him he does not experience a shortage of drugs because his medicine is always available. he reported that he was hiv+ and was on antiretrovirals (arvs), which are always available in the health facilities. at the community level, the ministry of health has deployed health surveillance assistants (hsas) whose work is mainly preventive and promotive in nature. they also provide treatment for minor illnesses. an older person in ntchisi reported that the hsa in her area used to provide medicines to her, but he was transferred, and hence she has problems accessing health care. ‘i do not have any means of transport to get to the facility to access health care. i used to get formal medication from a nearby hsa when i got sick but since the hsa moved, it is very difficult for me to access health care again. i used to access medication for malaria. my access to healthcare is now very poor because i do not access medication anymore. i would like to go to the health facility whenever i get sick but i fail to do so due to transport constraints.’ (77-year-old, female, informant, ntchisi) a 63-year-old female informant with a physical and mobility disability in ntchisi further explained that as the facilities run out of medicines quite often, some patients do not even go to the facility when they learn from others that there are no drugs: ‘sometimes due to inadequate drugs, medical assistants give the same drug for may be three different kinds of diseases. for example, one may have a headache or a dry cough and someone may have a backache but due to shortage of essential drugs all these patients might receive panadol. hence, shortage of essential drugs at the facility makes it difficult for a person to access health care.’ (63-year-old, female, mobility disability, ntchisi) table 3 shows that inadequate drugs and/or equipment is one of the factors that made it difficult for older people to get health care: only 40.5% among older people without disability and 41.9% among older people with disability reported not experiencing the problem of inadequate drugs or equipment. discussion this article demonstrates that poverty is at the core of the challenges experienced by older persons in accessing health care in malawi. this manifests itself among the older persons and their households as well as at the country level, where the health system has challenges in addressing the health care needs. older people experience challenges in accessing health care because of the cost associated with visits to the health facility during illness episodes. most older people described themselves as poor; hence, they could not pay user fees at cham facilities and could not afford the cost of transportation. world health organization (2016), helpage international (2017) and de carvalho (2017) also found that older people have problems paying for costs of health care and for transport to health facilities. the cost of transportation is also exacerbated by long distances to health facilities; hence, many older people have problems walking long distances because of old age, disability and limited availability of public transport, especially in rural areas (helpage international 2017). it can also be argued that the cost of health care for older persons is exacerbated by the fact that they require someone to accompany them to visit the health facility, which implies that they need to pay for an extra person on transport, as well as negatively affecting the productivity of that extra person. many older people also require health care more frequently than younger people and cost and distance make access to health care a huge challenge (helpage international 2017). in terms of transport, while bicycles are a common form of transport, some older people found it difficult to sit on bicycle carriers. helpage international (2017) also reports that bicycles may not be appropriate for transporting people who are unwell, frail or have mobility problems. the implementation of outreach clinics has led to improved coverage or utilisation of immunisation services, among other health services. for example, in order to ensure that distance is not the reason for non-vaccination of children under five, ministries of health in the developing world conduct outreach clinics in order to reach children living in remote and hard-to-reach communities, and this has led to many children being vaccinated (ashish et al. 2016; munthali 2018). there is, however, limited availability of outreach services targeting older people (helpage international 2017) or people with disabilities, which constitutes one of the factors that make it difficult for older persons to access health services. in malawi, the catchment areas for cham facilities and public health facilities do not overlap as mentioned earlier; hence, as this study found, older people find it difficult to access services at cham facilities. the implementation of cash transfers in some countries has helped older people to access health services, as they use the cash they have received to pay for transport to get to health facilities, consultation fees and treatment costs, health insurance and prescriptions (helpage international 2017). the lack of health insurance for older people has also been identified as a challenge that makes it difficult for this population group to access health care (fao & bsf 2007). the 2015/2016 malawi demographic and health survey found that there is low coverage of health insurance in the general population in malawi, with 99% and 98% of the women and men aged 15–49-years-old, respectively, reporting not having health insurance (national statistical office 2017). numerous other studies in malawi (jafry et al. 2016; mtonga et al. 2022; ritter et al. 2022) have also found that there are long queues in public health facilities; hence, long waiting times. this was also reported in this study. knight, schatz and mukumbang (2018) further reported that older people generally complain of tiredness, pain and hunger because of walking for a very long time or because of long waiting times at the health facility. while this problem is not unique to older people, it has been argued that this can be especially challenging for older people with physical or mobility challenges (kelly, mrengqwa & geffen 2019; who 2004, 2016) and is exacerbated by non-prioritisation of older people in the delivery of health services (kelly et al. 2019). this study has shown that some health workers have poor attitudes towards older people, including telling them that medicines are for younger people. such attitudes discourage older people from accessing health services. this finding is similar to studies conducted elsewhere (helpage international 2017; kelly et al. 2019; who 2004) where poor attitudes of health workers characterised by disinterest, rudeness and aggression negatively impacted access to health care services by older people. the humiliating experience of older people when they are seeking health care might be because of a lack of appropriately trained health workers (helpage international 2017; who 2004). older people may also require that they are accompanied when going to health facilities. the lack or absence of someone to accompany them tends to compromise seeking health care. older people, especially those who were blind, have arthritis or have other mobility challenges, said that they could not travel on their own without an assistant. helpage international (2017) further argues that the costs of transportation can be quite high, especially for older persons who require that someone accompany them to the health facility. these results generally demonstrate that more older persons with disabilities face barriers to accessing health care compared to those without disabilities, which is a great concern as they in general need more healthcare than persons without disability. currently, there are no special services available for older persons in malawi’s health sector. the health sector strategic plan 2022–2030 does not provide for special services or sections in the hospital for older persons. however, the national policy on older persons in malawi is committed to establishing older-person-friendly health services and lobbying for the inclusion of health services targeting older persons (mogcdsw 2015; nyasa, mwakikunga & chisati 2019). the 2024–2025 strategic plan for the malawi network of older persons organization (manepo) also aims at promoting age friendly health services in malawi and identifies two strategies aimed at improving access to health care by older persons. these are the sensitisation of health workers on the health rights of older persons and the provision of mobile health services targeting older people (manepo 2024). while the national health sector strategic plan 2022–2030 does not specifically provide for specific services for older persons, the availability of hsa (community health worker), the lowest cadre in malawi’s health sector based at community level, provides the potential for this cadre to provide services to older persons residing in communities, especially those who cannot walk to health facilities. however, this cadre has not been tapped to strategically provide services to older persons (nyasa et al. 2019). conclusion this study has shown that older people experience a wide range of challenges in accessing health care services, and this is particularly the case with older persons with disabilities. these various barriers explain why many older persons do not seek treatment or they delay in seeking care. there is an urgent need to address the problems faced by older persons while seeking health care. older people will resort to using herbal medicines because of barriers they experience in accessing health care at health facilities (hillbrom 2016). in order to address these challenges, as argued by rowe and fried (2019), there is a need for not only having adequate numbers of health workers but also ensuring that they have competencies in dealing with diseases and conditions experienced by older people. because most older people have mobility challenges because of old age and they are poor, there is an urgent need to develop community-based health and social services targeting older people (rowe & fried 2019). these services should not be discriminatory of age and should be close to where older people live (de carvalho 2017). there is therefore a need to have a health system which should target the most vulnerable populations, including older people, not at the expense of other population groups, but to ensure health care is available for all, in the spirit of the sdg’s vow to ‘leave no one behind’. acknowledgements competing interests the authors reported that they received funding from the norwegian research council and the eu, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions a.m. conceptualised and drafted the manuscript and contributed to formal analysis, conducted fieldwork, contributed to project administration for both equitable and geohealthaccess and reviewed and edited the manuscript. a.e. contributed to the training of research assistants, data analysis, was the work package leader for the quantitative component of the equitable project, led the administration of the geohealthaccess project, reviewed and edited the manuscript and led the process of getting funding from the norwegian research council. s.h.b. contributed to the training of research assistants, conducted fieldwork for the geohealthaccess study, contributed to the administration of the geohealthaccess study, reviewed and edited the manuscript and contributed to seeking funding for the geohealthaccess study. p.m.m. conducted fieldwork, contributed to formal analysis and reviewed and edited the manuscript. m.m. led the administration of the equitable project, contributed to formal analysis, reviewed and edited the manuscript, and led the process of applying for funding for the equitable project from the eu. h.m. was project manager for the equitable project, contributed to formal analysis, reviewed and edited the manuscript and trained research assistants for the equitable project. funding information the geohealthaccess was funded by the norwegian research council while the equitable study was funded by the eu. data availability the datasets from the equitable study and geohealthaccess studies are not publicly available, but requests for the data can be made to the principal investigators, namely prof. malcolm maclachlan and prof. arne eide of maynooth university and sintef, respectively. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references ashish, k.c., nelin, v., raaijmakers, h., kim, h.j., singh, c. & malqvist, m., 2016, ‘increased immunisation coverage addresses the equity gap in nepal’, bulletin of the world health organization 95(4), 261–269. https://doi.org/10.2471/blt.16.187617 chukwudi, o.n., uyilewhoma, i.m., chukwudi, i.e., ebi, e.j., emmanuel, o.m., kalu, o.o. et al., 2015, ‘determinants of health services utilisation among the elderly in calabar municipality, cross river state, nigeria’, european journal of preventive medicine 3(5), 129–136. https://doi.org/10.11648/j.ejpm.20150305.11 de carvalho, i.a., epping-jordan, j., pot, a.m., kelly, e., toro, n., thiyagarajan, j.a. et al., 2017, ‘organising health services to meet older people’s needs’, bulletin of the world health organization 95(11), 756–763. https://doi.org/10.2471/blt.16.187617 fanelli, s., salvatore, f.p., de pascal, d. & faccilongo, n., 2020, ‘insights for the future of health system partnerships in lowand middle-income countries: a systematic review’, bmc health services research 20(1), 571. https://doi.org/10.1186/s12913-020-05435-8 fao & bsf, 2007, population ageing in malawi: understanding challenges, responding to opportunities: proceedings of the meeting held in lilongwe, malawi on 28–29 november 2007, fao and bsf, lilongwe. goodman-palmer, d., ferriolli, 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experiences of primary health care in cape town, south africa’, bmc geriatrics 19(1), 98. https://doi.org/10.1186/s12877-019-1116-0 knight, l., schatz, e. & mukumbang, f.c., 2018, ‘“i attend at vanguard and i attend here as well”: barriers to accessing health care services among older south africans with hiv and non-communicable diseases’, international journal for equity in health 17(1), 147. https://doi.org/10.1186/s12939-018-0863-4 manepo, 2024, strategic plan for the malawi network of older persons (manepo) 2024–2025, manepo, blantyre. ministry of health (moh), 2023, health sector strategic plan iii 2023–2030: reforming for universal health coverage, moh, lilongwe. ministry of health, 2011, health sector strategic plan i 2011–2016, ministry of health, lilongwe. mogcdsw, 2015, national policy for older persons, mogcdsw, lilongwe. moh (mspa) & icf international, 2014, malawi service provision assessment survey (mspa) 2013–14, moh [mspa] & icf international, lilongwe & rockville, 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‘care for older people in malawi: a situation analysis’, social innovations journal 56, 1–13, viewed 15 december 2024, from https://socialinnovationsjournal.org/editions/issue-56/75-disruptive-innovations/3001-care-for-older-people-in-malawi-a-situation-analysis. ritter, r., nkhwalingwa, n., anthony, c. & kistemann, t., 2022, ‘coping with ill-health while lacking access to health care: acceptability of health service provision in rural malawi – a qualitative study’, global health action 15(1), 2062174. https://doi.org/10.1080/16549716.2022.2062174 rowe, j.w. & fried, l.p., 2019, ‘meeting the health care needs of aging societies’, brown journal of world affairs 20(1), 57–67. scheppers, e., van dongen, e., dekker, j., geertzen, j. & dekker, j., 2006, ‘potential barriers to the use of health services among ethnic minorities: a review’, family practice 23(3), 325–348. https://doi.org/10.1093/fampra/cmi113 swartz, l., schneider, m., mji, g., vergunst, r., visagie, s., braathen, s.h. et al., 2011, enabling universal and equitable access to healthcare for vulnerable people in resource poor settings in africa, consolidated report for work package 3 (phase 1): intensive qualitative studies, viewed 15 december 2024, from https://www.sintef.no/contentassets/b3cb90892df741f9b7b9ad65a892279a/equitable-wp3-integrated-report-august-2011.pdf. undesa, 2017, world population ageing 2017 highlights, undesa, new york, ny. united nations, 2022, world population prospects 2022, online edition, viewed 15 december 2024, from https://population.un.org/wpp/. van rooy, g., 2018, ‘equitable access to healthcare services for people with disability in the regions of khomas and kunene’, phd dissertation, university of namibia. vergunst, r., 2016, ‘access to health care for persons with disabilities in rural madwaleni, eastern cape, south africa’, phd thesis, faculty of arts and social sciences, stellenbosch university. world health organization (who), 2004, towards age-friendly primary health care, who, geneva. world health organization (who), 2016, world report on ageing and health, who, geneva. footnote 1. prof. leslie swartz who played a very important role in both studies upon which this article is based. in the equitable study, he provided overall leadership of the qualitative component, including the training of research assistants in malawi. in geohealthaccess, he formed part of the project’s advisory board and specifically contributed to the design of the qualitative study. abstract sexuality, assistive products list and assistive devices ethical consideration the assistive products list is silent on sexual assistive devices conclusion acknowledgements references about the author(s) christine peta centre for rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, south africa citation peta, c., 2018, ‘deafening silence on a vital issue: the world health organization has ignored the sexuality of persons with disabilities’, african journal of disability 7(0), a474. https://doi.org/10.4102/ajod.v7i0.474 opinion paper deafening silence on a vital issue: the world health organization has ignored the sexuality of persons with disabilities christine peta received: 12 dec. 2017; accepted: 22 mar. 2018; published: 16 july 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract in 2016, the world health organization, through the global cooperation on assistive technology initiative, issued the priority assistive products list which is meant to be a guide to member states of the 50 assistive products needed for a basic health care and/or social welfare system; it is also a model from which nations can develop their national priority assistive products lists. the aim of this opinion paper is to share my views about the priority assistive products list on the grounds that it makes no distinct mention of sexual assistive devices, yet research has indicated that sexuality is an area of great concern for persons with disabilities. in any case, sexuality forms a core part of being human, and it impacts on both the physical and mental well-being of all human beings. i conclude in part that, in its present format, the list perpetuates the myth that persons with disabilities are asexual beings who are innocent of sexual thoughts, feelings and experiences. the list also propagates the stereotype that sexuality is a sacred, private, bedroom matter that should be kept out of the public domain, to the detriment of the health and well-being of persons with disabilities. sexuality, assistive products list and assistive devices sexuality encompasses the total behaviour of who we are as human beings, from birth to death, including the growth of our bodies in relation to, among other things, puberty, menstruation and reproduction; it involves how a person feels about himself or herself, how he or she feels about others, as well as his or her interaction with society (makinwa-adebusoye & tiemoko 2007). people may explore their bodies through masturbation or personal fantasies at the individual level, but they may still want to choose persons with whom they address their sexuality with. however, the world health organization (who) assistive products list (apl) is devoid of sexual assistive devices, thereby ignoring the sexuality of persons with disabilities and reducing complex beings to a single social life attribute of disability. yet, the american occupational therapy association asserts that sexuality is part of every person’s life and therefore an activity of daily living along with eating, toileting and dressing (naphtali, machattie & elliott 2009); gomez (2012) and mckenzie (2012) also assert that no human being is asexual. nevertheless, the ability of persons with disabilities to engage in sexual activity can to a great extent be altered by motor, sensory and autonomic dysfunction (naphtali et al. 2009). motor dysfunction may relate to the movement of arms and legs, sensory dysfunction to temperature and touch sensations, and autonomic dysfunction to the regulation of blood pressure. however, persons with disabilities have commonly reported that gaining or regaining sexual functioning is one of their priorities (anderson 2004; peta 2017a). a study carried out by anderson (2004) in the united states revealed that recovering sexual function tops the list of priorities of persons with paraplegia. whilst the disability movement prioritises issues such as housing and transportation, waxman (1989:2) states that ‘many people with disabilities consider sexuality to be an area of their greatest oppression: we are more concerned with being loved and finding sexual fulfilment than getting on a bus’. the irony of the matter is that compared to other rehabilitative spheres, such as occupational therapy and physiotherapy, sexual rehabilitation receives the least attention, yet a part of the united nations convention on the rights of persons with disabilities in article 26 (united nations 2006), directs state parties to design and implement comprehensive rehabilitation services. some scholars have noted that the subject of sexuality is regarded as a very sensitive topic which is difficult to discuss even among clinicians (mall & swartz 2012); it is therefore not surprising that the stakeholders who participated in the formulation of the apl may have found it difficult to advocate for the inclusion of sexual assistive devices. however, in this opinion paper, the subject of sexuality is closely linked to assistive devices; hence, the meaning of assistive devices is explained below. under the who global cooperation on assistive technology (gate) initiative, a list of 50 assistive products, namely, the apl was published. the main goal of the gate project is to improve on the status quo, where currently only 1 person among 10 people of those in need is able to access assistive products. assistive devices or assistive products are defined as: any external product (including devices, equipment, instruments or software), especially produced or generally available, the primary purpose of which is to maintain or improve an individual’s functioning and independence, and thereby promote their well-being. assistive products are also used to prevent impairments and secondary health conditions. (who 2016:1) in line with the above definition, the significance of sexual assistive devices in preventing impairments and secondary health conditions as well as promoting the well-being of persons with disabilities is further discussed below. ethical consideration the confidentiality and anonymity of persons who took part in other studies that were undertaken by the author of this opinion paper and that are referenced in this publication are upheld. the assistive products list is silent on sexual assistive devices the most common examples of assistive devices that have been identified by who include hearing aids, communication boards, wheelchairs, canes, prosthetic and orthotic devices, spectacles, low vision aids, portable ramps and incontinence products (absorbent) (afrinead n.d.; who 2016). in canada, naphtali et al. (2009) illuminated examples of sexual assistive devices that may enhance the sexual expression of persons with disabilities; intimate riders, harnesses, leather cuffs, hands free kits, massagers and body bouncers. however, articulating a comprehensive list of such devices and the distinct ways in which they enhance the sexuality of persons with disabilities or promote their well-being would take this opinion paper beyond its requirements in terms of both scope and length. nevertheless, the intimate rider, which was designed by an individual with c6-7 quadriplegia to facilitate varied positions of sexual activities (naphtali et al. 2009), is an example of one of the sexual assistive devices that could have been included in the apl. the rider comprises accessible supports such as grab bars or counter tops; its use along with additional sexual assistive devices could promote the health and well-being of persons with disabilities as illustrated in the example below. a study carried out in zimbabwe by peta (2017a; 2017b) revealed that women who acquire physical impairment in the course of their marriages, particularly spinal cord–induced impairment, are often deserted by their husbands who castigate them for the ways that disability alters their sexual expression, thereby withdrawing all forms of support that would have been extended to the wife before the ‘arrival’ of the disability. the result is untold anguish, which among other impairments results in the occurrence of psychosocial impairments that include bipolar affective disorder or the occurrence of disease and impairments among children. the women struggle to economically fend for themselves and their minor children, whilst at the same time making efforts to adjust to the social and sexual challenges that are brought about by disability (peta 2017a; 2017b). the use of the intimate rider and additional assistive sexual devices could reduce sexual frustration, save marriages and keep nuclear families together within contexts where healthy children are likely to be raised. nevertheless, the omission of sexual assistive devices in the apl can be attributed to the five-stage strategy which guided the formulation of the apl (afrinead n.d.), as further discussed below. the apl emerged from a scoping review, pilot survey, delphi exercise, global survey and global consultation (afrinead n.d.). the process was also guided by an initial proposed breakdown of 155 ‘important’ assistive products that were from the onset solicited to fit in six pre-determined areas: (1) mobility, (2) vision, (3) hearing, (4) communication, (5) cognition and (6) environment. sexuality could have been included as a seventh area, considering that all human beings including persons with disabilities are sexual beings; disability intersects with sexuality which needs to be supported by appropriate assistive sexual devices. that is not to dispute the fact that the apl is a guide, but it is to say that as evidenced by the earlier example of women with disabilities in zimbabwe, a deafening silence about sexuality in such an original international list makes it easier to keep the subject of sexuality ‘hidden’ in subsequent national lists, thereby opening doors for sexuality to be used negatively in abuse, control, oppression, to cover up sexual scandals and to misinform one another (interesting interests 2009; peta 2017a); disability adds a rung to the ladder of such vulnerabilities. in any case, some studies undertaken in both the global north and the global south have confirmed the need for people with disabilities to have appropriate sexual assistive devices that enable them to have a positive sexual life, which ultimately enhances their health and well-being (mackelprang 2009; naphtali et al. 2009; peta 2017a; taylor 2011). in the united states, mackelprang (2009) points at vibrators and states that such sexual assistive devices are valuable because they enhance stimulation when there is reduced sensation and they can also be useful in instances where mobility is restricted. in the united kingdom, taylor (2011) calls upon occupational therapists to pay attention to the impact of assistive devices on sexual expression. a study carried out in zimbabwe by peta (2017a, 2017b) revealed emotional distress among women with disabilities if something goes wrong during intimate moments with their male partners, whilst the women are using inappropriate assistive devices or none at all owing to unavailability. the use of appropriate sexual assistive devices contributes to the promotion of safe sexual environments, safe sexual practices, keeping families together and the raising of healthy children whose survival, protection and development are prerequisites for future development and humanity. conclusion there is need to bring the subject of sexuality into the discourse of assistive devices; persons with disabilities are not asexual beings. i therefore call upon the architects of the apl to come to terms with the fact that people with disabilities have a right to sexual expression, and as noted by morris (2001) they should be allowed access to relevant entitlements (including sexual assistive devices), not only because they are human beings but also because they are equal citizens. the pledge that ‘no one will be left behind’ and that governments will endeavour to reach ‘the furthest behind first’ lies at the heart of the sustainable development goals (sdgs) (united nations development program 2018). to ensure that no one is left behind, architects of the apl should include sexual assistive devices that are not exclusionary but that embrace persons with disabilities of all sexual orientations, including lesbian, gay, bisexual, transgender and intersex (lgbt1). perpetual failure to openly name assistive devices that enhance the sexual expression of persons with disabilities may result in the apl sending a potent message which may be misconstrued to mean that the subject is an unimportant side issue. such distinct naming promises to go a long way in raising awareness of the sexual rights of persons with disabilities and to nurture receptiveness to their rights. whether we like it or not, sexuality is a major rehabilitation priority for persons with disabilities; hence, it should be respected, celebrated and be openly talked about (naphtali et al. 2009). sustainable development goal number 3 calls upon state parties to ‘ensure healthy lives and promote well-being for all at all ages’, but how can sdg number 3 be attained if the apl maintains a deafening silence on assistive devices that are directly related to sexual rehabilitation? the open inclusion of sexual language in international policy documents, legal instruments and guidelines can go a long way in dismantling myths that surround the sexuality of persons with disabilities, thereby enhancing their quality of life, health and well-being. acknowledgements competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. references afrinead, n.d., gate project (who) concept note: who model list of priority assistive products, viewed 21 november 2017, from http://blogs.sun.ac.za/afrinead/gate-project-who/ anderson, k., 2004, ‘targeting recovery: priorities of the spinal cord-injured population’, journal of neurotrauma 21(10), 1371–1383. https://doi.org/10.1089/neu.2004.21.1371 gomez, t.g., 2012, ‘the s words: sexuality, sensuality, sexual expression and people with intellectual disability’, sexuality & disability 30(2), 237–245. https://doi.org/10.1007/s11195-011-9250-4 interesting interests, 2009, sexuality as a private matter, viewed 28 june 2013, from http://interestingscs.blogspot.com/2009/08/sexuality-as-private-matter.html mackelprang, r.w., 2009, ‘a holistic social work approach to providing sexuality education and counseling for persons with severe disabilities’, in d.p. valentine & r.w. mackelprang (eds.), sexuality and disabilities: a guide for human service practitioners, pp. 66–86, harworth press, new york. makinwa-adebusoye, p. & tiemoko, r., 2007, ‘introduction: healthy sexuality discourses in east, west, north and southern africa’, in e. maticka-tyndale, r. tiemoko & p. makinwa-adebusoye (eds.), human sexuality in africa: beyond reproduction, pp.1–16, jacana media, auckland park. mall, s. & swartz, l., 2012, ‘sexuality, disability and human rights: strengthening healthcare for disabled people’, south african medical journal 102, 792–793. https://doi.org/10.7196/samj.6052 mckenzie, j.a., 2012, ‘disabled people in rural south africa talk about sexuality’, culture and sexuality: an international journal for research, intervention and care 15(3), 372–386. https://doi.org/10.1080/13691058.2012.748936 morris, j., 2001, ‘impairment and disability. constructing an ethics of care that promotes human rights’, hypatia 16(4), 1–16. https://doi.org/10.1111/j.1527-2001.2001.tb00750.x naphtali, k. & machattie, e., 2009, pleasurable: sexual device manual for persons with disability, disability health research network, vancouver, bc. peta, c., 2017a, disability and sexuality in zimbabwe: voices from the periphery, taylor and francis, london. peta, c., 2017b, ‘the sacred institution of marriage: the case of disabled women in zimbabwe’, sexuality and disability 35(1), 45–58. https://doi.org/10.1007/s11195-016-9463-7 taylor, b., 2011, ‘the impact of assistive equipment on intimacy and sexual expression’, british journal of occupational therapy 74(9), 435–442. https://doi.org/10.4276/030802211x13153015305637 united nations, 2006, convention on the rights of persons with disabilities (crpd), viewed 02 november 2017, from http://www.un.org/disabilities/convention/conventionfull.shtml united nations development program, 2018, sustainable development goals, viewed 22 january 2018, from http://www.undp.org/content/undp/en/home/sustainable-development-goals.html waxman, b.f., 1989, ‘the politics of sex and disability’, disability studies quarterly 9(3), 1–5. who, 2016, priority assistive products list: consensus meeting summary, who publications, geneva, viewed 21 november 2017, from http://apps.who.int/iris/bitstream/handle/10665/207694/who_emp_phi_2016.01_eng.pdf;jsessionid=dbafe3076f0f4dc21a4628845da9af14?sequence=1 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) yanga manxusa department of global health, division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa michelle botha department of global health, division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation manxusa, y. & botha, m., 2025, ‘disability inclusion and participation in mount frere, eastern cape: barriers and facilitators’, african journal of disability 14(0), a1735. https://doi.org/10.4102/ajod.v14i0.1735 original research disability inclusion and participation in mount frere, eastern cape: barriers and facilitators yanga manxusa, michelle botha received: 16 apr. 2025; accepted: 29 sept. 2025; published: 31 oct. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: rural settings may present particular challenges to the inclusion and participation of people with physical disabilities (pwpd). these relate to the physical environment, infrastructure and service delivery issues, socioeconomic constraints and specific traditional and cultural beliefs surrounding disability. targeted interventions require an understanding of these contextual specifics. objectives: this study investigated the lived experiences of people with disabilities in relation to social inclusion and participation in mount frere, a rural town in the eastern cape, south africa. method: a qualitative phenomenological approach was used to explore the barriers, facilitators and underlying cultural perceptions that shape the inclusion and participation experiences of pwpd in this community. five participants with paraplegia were interviewed using semi-structured interviews, and thematic analysis was employed. results: the findings reveal significant challenges, including societal stigma rooted in traditional beliefs, infrastructural inaccessibility and economic constraints, which collectively hinder social inclusion and participation. despite these barriers, the participants’ resilience, adaptability and agency were evident. the results illustrate the importance of a biopsychosocial approach to understanding the barriers and facilitators to inclusion and participation for pwpd in rural settings. conclusion: the study highlights the need for a holistic approach to disability interventions, emphasising development, community education to combat stigma and the promotion of economic empowerment for pwpd. contribution: these findings contribute to the broader discourse on disability rights in rural south african contexts and call for targeted, context-specific policies to enhance inclusion and participation. keywords: physical disabilities; rural communities; inclusion; participation; cultural beliefs; resilience. introduction in south african rural settings, people with disabilities face particular barriers to social inclusion and participation (dassah et al. 2018; vergunst et al. 2017). vergunst et al. (2017) highlight barriers to access to healthcare for people with disabilities in rural areas that include transportation challenges, accessibility challenges, discriminatory attitudes from health workers and communication challenges. similarly, vanderschuren and nnene (2021) document barriers to free movement in urban spaces, such as inaccessible public transportation to wheelchair users, the lack of kerb cuts and ramps in most places and poor maintenance of sidewalks – barriers compounded in rural settings. while much of the literature has focused on barriers to healthcare access in rural settings, there is a need to investigate access challenges more broadly, including access to social and cultural life, economic opportunities and leisure and recreation (cieza et al. 2018; who 2001; who et al. 2010). importantly, investigating inclusion and participation experiences across various social spheres must recognise how both systemic barriers and societal perceptions create disabling circumstances. social inclusion and participation are integral to mental health and well-being (chen et al. 2022; gokmen et al. 2023). yet, people with disabilities are often denied these opportunities – deemed unfit to participate by society based on a narrow and limiting understanding of the experience of impairments, capabilities and adaptations and people with disabilities’ interest to participate (martin 2013). this is defined as ableism – discrimination against people with disabilities, which can be in the form of a thought, speech and action (campbell 2009). ableist discrimination rests on assumptions on what constitutes ‘normal function’ and links this to social value (campbell 2009). in our societies, then, there is often an unspoken, underlying premise that the understandings of people without disabilities are more worthy or that those understandings are enough. this systemic silencing removes people with disabilities from the centre of conversations about disability access and inclusion, reinforcing narrow and often negative ideas about the nature, needs and capabilities of people with disabilities, including those with physical disabilities (botha & watermeyer 2024; jones & cheuk 2021). this article presents the lived experiences of people with physical disabilities (pwpd hereafter) residing in mount frere, a small rural town in the eastern cape, south africa. these experiences were gathered through a qualitative research study that explored how ableism operates in this rural setting, shaping the inclusion and participation of pwpd. the study acknowledges the impact of cultural beliefs, resource constraints and social structures as contextual factors in rural settings that intersect to strengthen or disrupt ableism. we hope to offer new insights into how ableism is lived and defied by pwpd. giving a platform to people with disabilities is not only about representation; it is an issue of recognition of their agency, the subjugation of their lived realities and taking apart the structures that have worked to keep them silent (smilges 2022). physical disability encompasses conditions that affect a person’s ability to perform activities, including walking, climbing stairs, lifting, reaching an object and carrying (mcdougall, wright & rosenbaum 2010). however, as noted, social stigma attached to physical disabilities is arguably the central disabling factor that affects the social inclusion and effective participation and, by extension, the well-being of pwpd (babik & gardner 2021). this group is also particularly visible in the community, and this may attract particular forms of stigma (garland-thomson 2009). below, we begin by providing some description of the cultural and material contexts that pwpd are likely to have to navigate in rural settings in africa, based on evidence from the literature. this is followed by a brief description of the conceptual lenses employed in this study, namely the biopsychosocial model of disability. here, we also define a crucial distinction between the concepts of ‘inclusion’ and ‘participation’. context: ableist barriers in rural settings customs, rituals and traditional beliefs form an integral part of indigenous rural communities in south africa. these may also include and intersect with beliefs grounded in christianity. reviewing the literature on how disability is factored into these belief systems reveals divergent knowledge, a dichotomy of positive and negative cultural perspectives that people with disabilities must navigate. the latter relates to the view of disability as a punishment for wrongdoing, connected to the strong belief in ancestors (donkor 2011; ngubane-mokiwa 2018), or as bewitchment, connected to anxieties about opposing spiritual forces (ennion & rhoda 2016). ideas of disability as punishment for sin are also found in christianity; for example, in deuteronomy 28:27–29, we find that bodily ailments are listed as curses for sinfulness, further affirming perceptions of disability as the wrath of god. these beliefs can negatively impact on health-seeking behaviours (ennion & rhoda 2016; mhalu et al. 2019) and the efficacy of awareness programmes to promote disability inclusion. moreover, communities may respond to anxieties about disability, curse and contagion by segregating community members with disabilities (edomwonyi & oniminya 2014). scholars argue that actively incorporating traditional beliefs and health practices, and including traditional healers as healthcare stakeholders, is essential to promoting health-seeking behaviour in culturally coherent settings (ohajunwa & sefotho 2024). on the other hand, scholars have noted the transformative potential of the concept of ubuntu, an ethic distinct to africa, for promoting disability inclusion and safeguarding the humanity and dignity of pwpd (dwadwa-henda, mji & ohajunwa 2025; ned 2022). ubuntu is premised on the notion that everyone is inherently valuable and interconnected with their community, challenging ableist perspectives (ohajunwa & mji 2021). marovah and mutanga (2023) further emphasise that ubuntu is not merely a cultural value but a regenerative african framework for disability that emanates from care, solidarity and recognition of one another, countering western individualism and reconceptualising inclusion grounded in interconnectedness. dwadwa-henda et al. (2025), for example, conducted a study in rural communities in south africa, finding that people with disabilities are actively included in rituals. this inclusion is based on the belief in inherent and mutually reinforcing humanity, which transcends ability and vulnerability – as reflected in their study title, ‘the soul has no disability’ (dwadwa-henda et al. 2025). while ubuntu offers a strong foundation for inclusion, scholars emphasise that it must be integrated with modern disability rights frameworks to ensure that individuals with disabilities can participate equally in all aspects of life (ned 2022). people with physical disabilities in rural contexts might be constrained in a world of contradictions, straddling malignant traditional views that connect disability to curse and contagion and supportive beliefs that safeguard humanity and dignity based on the ethic of ubuntu. evolving modernity and the colonial importation of western values to africa further complicate the scenario (grech 2016). materially, there are also resource constraints in rural areas that militate against inclusion. people with disabilities in rural areas are less likely to attend school, to be employed, to be attended by a healthcare professional and to own a cell phone and are more likely to be left behind in rural development initiatives (jonckheere 2020). conceptual framework: biopsychosocial model and the inclusion and participation distinction while this study adopted a phenomenological methodology to remain as close as possible to an individual’s experiences without directing the scalpel of the research agenda of the authors, ultimately the biopsychosocial model was used as a lens to read across the data. this was done to aid in the interpretation and discussion of the barriers and facilitators post-analysis. it is crucial to understand that these barriers and facilitators involve not only biological factors related to health and impairment but also psychological health and social factors. the biopsychosocial model was conceptualised in 1977 by george l. engel. engel recognised the deficiency of the biomedical model of health and illness, which focused solely on biological factors affecting health, and the need for a more holistic approach to understanding the causes and remedies of illness and disability (engel 1977). the resulting biopsychosocial approach emphasises how societal attitudes, physical environments and psycho-emotional well-being interface with biological conditions to promote or hinder good health and well-being outcomes (wade & halligan 2017). understanding this interplay enables a more holistic exploration of the constitution of barriers and facilitators to social inclusion and participation and the consequences of these for individual pwpd. both the biopsychosocial model as a strategy and as a philosophy provide a helpful, holistic framework by bringing together the biomedical, psychological and social aspects of disability. however, it is worth considering the contextualisation of the model within western epistemology. in rural african settings, where local knowledge systems, relational systems of belief and spirituality continue to shape the experiences of disability, such models may not necessarily reflect regional realities. the calls to decolonise african disability studies are, therefore, warranted, as they advance the acknowledgement and inclusion of african epistemologies, such as ubuntu, which highlight community, interdependence and dignity as ways of thinking about disability. this would enrich the applicability of the biopsychosocial model by integrating african perspectives, which provide an interpretation of barriers and facilitators based on culture and context. a further conceptual underpinning of this study relates to the distinction between ‘inclusion’ and ‘participation’. it continues to be difficult to define these terms independently, and inclusion is often cited in simplistic terms as the solution to exclusion (davey & gordon 2017). however, we cannot just replace exclusion with inclusion; we need to address the multi-layered barriers that people with disabilities face to ensure that they can participate (botha et al. 2023). ‘inclusion’ means the opportunity for all people to be welcomed into social spaces, free from unfair barriers and prejudice. it is the precursor for participation. ‘participation’, however, involves the actual engagement of people in activities in a meaningful manner. bowa (2024) asserts that disability inclusion in africa must be rooted in ubuntu and sustainable development based on the values of interdependence, dignity and addressing structural inequalities. it transcends mere physical presence and goes beyond issues of poverty and marginalisation, giving recognition to the engagement of those living with disabilities: inclusion makes participation possible, and participation completes the goal of inclusion (quick & feldman 2011). it is therefore not enough that people with disabilities are able to occupy a space; they need to be able to take part in all activities of life on an equal basis with others, as enshrined in the united nations convention on the rights of persons with disabilities (uncrpd) (united nations [un] 2007). bowa (2024) theorises the exercise of support for inclusion as a communal responsibility, which links the welfare of people with disabilities to the moral well-being of the entire community and questions an individualistic understanding of inclusion. research methods and design this study adopted a qualitative phenomenological approach. according to lester (1999), phenomenological design is a research approach that examines how participants think about, interpret and experience specific phenomena in their daily lives. phenomenological design is used in acquiring depth and critical understanding through focusing on participants’ understanding of a particular subject matter (qutoshi 2018) – in this case, lived experiences of inclusion and participation. sampling and recruitment mount frere is a small remote setting. in the field of disability, there is no literature for this region. to utilise a qualitative phenomenology seeking rich data, the first author used purposive sampling, later followed by snowball sampling, to identify a sample of five pwpd. though small, five participants can be a minimum for qualitative research (dworkin 2012). primarily, a purposive homogeneous sampling procedure was used. in this sampling method, participants must have similar traits or characteristics (taherodoost 2016). a snowball sampling strategy was also used because the first sampling strategy was not entirely successful. a snowball sampling method is used when participants assist the authors in acquiring participants that fit the criterion (taherodoost 2016). with their consent to act as intermediaries, initial contacts shared the study information with potential participants from their networks. participants were required to have the following characteristics for inclusion in the study: participants were all 18 years and above, as this is the legal age for adulthood decisions. all participants were residing or have for most of their lives resided in mount frere. all participants were persons who are paraplegic, as this study focused specifically on the experiences of pwpd. the exclusion criteria were as follows: people with multiple disabilities or other impairment types were excluded, as the study was focused on specific beliefs that surround pwpd and their resulting experiences of social inclusion and participation. people who have been living with a disability for less than 5 years were excluded, as they might not have in-depth experience in all aspects of life with regard to social inclusion and participation. recruitment was done from the first author’s network of contacts in the community, where he lives and works as a health professional. it is important to be clear that the potential participants were not the first author’s patients. he approached the participants in person and explained the study and asked if they were willing to consent as participants. some accepted and some declined, without explanation; however, in tight-knit communities, privacy might be a reason for such non-acceptance. in line with ethical research principles, care was taken to ensure voluntary participation without any form of coercion (nelson et al. 2011). potential participants were explicitly informed that their decision to participate or decline would have no impact on their relationship with the first author or their access to any services, and they were free to withdraw from the study at any time without consequences. participants the study included five participants, and each was assigned a pseudonym. the following section provides brief demographic and contextual profiles of each participant to help readers understand their diverse backgrounds and experiences while maintaining confidentiality. these descriptions offer an important context for interpreting their perspectives on disability and social inclusion and participation. mr. simon ceba (mid-50s) was employed in a senior management position prior to the accident, which rendered him paraplegic. he was a married man with several children. he was known to be tall, muscular and strong – a status that, coupled with his professional and social roles, commanded great respect. after the accident, his previous employment enabled him to retire comfortably, with medical aid schemes that continue to support his access to private healthcare, even if it is over 100 km from his residence. however, the accident damaged his personal life. his wife abandoned him and moved away, taking his grown-up children. mr. ali harrison (58 years old) became paraplegic at the age of 5. the cause has never been properly determined. his growing-up years in a rural area involved trying to navigate life in a wheelchair. although he enjoyed sporting and social activities, the necessity for being assisted discouraged him from taking part, as he never wanted to be a burden on other people. he has never had a romantic partner, and he has no children. he lives with his family and runs a small shop from their one-roomed residence. mr. kenny jojo (66 years old) was paralysed in an accident 8 years ago. he lives with his wife and grandchildren. though he never had formal employment, he used to provide for his family through manual labour. now, being unable to work, he relies on a state disability grant. ms. angelina sithole (24 years old) experienced a car accident when she was 18, which left her paralysed. prior to that, she had been a student and a content creator on social media with quite a bubbly personality. she transferred to a distance learning course to continue her studies, and she depends on a state disability grant. she shies away from friends inviting her out and says that her interest in social media has faded. ms. mqoqi (52 years old) was shot in the lumbar region, which left her paraplegic. she was married but got divorced after 15 years, on the day she received the news of being paraplegic. further to this, her ex-husband received 50% of her pension funds. she has medical aid for her medical needs, as she is working as an administrator. data collection semi-structured interviews were conducted, which enabled participants to expand on specific topics and explore areas that the first author may not have anticipated (gibson & brown 2009). the semi-structured interview guide that was developed was used to facilitate dialogue but left space for the participant to steer the flow and to be led by the passage of their own narratives. the guide, although based on the study’s aims and reviewed literature, served as a conversational aid only. as a result, participants’ lived experiences of ableism culture, material circumstances and social processes were made visible within a familiar rural context, in ways that we hope were respectful and organic. interviews were conducted in xhosa, the first language of the participants and the first author. interviews were recorded with participant consent, then transcribed in xhosa and finally translated into english. the first author used a research assistant to check and affirm his translations as a means to ensure accuracy. ethical considerations the study received ethical clearance from the stellenbosch university health research ethics committee on 26 march 2024 (hrec reference no: s23/10/259). in accordance with cultural respect and norms, permission to conduct the study was requested at kwabhaca royal kraal. all participants were briefed on the study and were asked to sign an informed consent form stating that their participation was voluntary, that they understood their right to withdraw and that the first author had permission to record and transcribe their interview. project information was provided in xhosa, the predominant local language in the area. in addition, the participants’ names were anonymised to protect their privacy. the recorded data were securely stored. participants were protected from any form of discomfort, be it physical or mental. interviews took place at their preferred time and place. in case of emotional distress, the first author arranged for local social workers to provide counselling support. this safeguard was, however, not required. a note on positionality the first author was born and grew up in this region. he is also a private practice managing director located in this small town. he is widely known in this neighbourhood as a healthcare provider and as a child, brother, friend and tutor to some potential participants. he is not related to them by blood, but he is part of this community with strong african values. the recruitment was done in the community by one of their own, who was brought up as they were. although the first author’s long-standing community presence helped establish rapport and trust in the recruitment and interview process, this dual role of the health professional and researcher may have also been a limitation. some potential participants might have felt that the study was too directly connected to their therapeutic or personal history, leading them to prefer not to participate (trondsen & sandaunet 2009). such tensions were considered in the study design, and the importance of stressing voluntary participation and confidentiality was taken into account. data analysis the study adopted inductive thematic analysis (braun & clarke 2006). this technique enabled the first author to allow the participants to narrate the stories of their inclusion and participation, bracketing his own ideas. six phases of analysis were undertaken, which are: familiarisation with the data through transcribing, translating and reading the transcripts identification of items of potential interest through re-reading the data starting to produce primary codes grouping data fragments with similar meanings generating initial themes from these primary codes and reviewing the initial themes to ensure their distinctness from each other naming and defining themes. several means were undertaken to enhance the trustworthiness of the analysis. firstly, the transcripts (which were translated) underwent back translations by a language translation expert to check for accuracy and cultural relevance. secondly, a second coder was trained on the initial coding and theme generation, who also served as the study supervisor. this supported checking interpretation slippage and extending the boundaries of the theme to achieve reliability. thirdly, transcripts were returned to the participants for validation to ensure that their views were indeed captured. this process of member checking provided credibility and confirmability to the data interpretation. results table 1 provides an overview of the themes and sub-themes that emerged in the analysis. table 1: themes and sub-themes. theme 1: social dynamics participant narratives demonstrated that community attitudes, influenced by traditional beliefs and sociocultural norms, act as barriers or facilitators to engagement in social activities. this is connected to the sense of belonging that individuals are able to foster, with emotional and psychological consequences. sub-theme 1.1: family dynamics the closest structure we have is the family. participant experiences illustrate the emotional and psychological effects that result when family dynamics are disrupted by the onset of impairment: ‘honestly, not that my marriage was perfect, but after the accident, things went worse’. (mr. ceba) similarly, one participant illustrated the dramatic change in family responses after the disability: ‘after the incident, no one cares for me’. (mr jojo) likewise, another participant shared: ‘my husband divorced when he discovered i will not walk again’. (ms mqoqi) these participants expressed a sense of abandonment and the loss of their familial roles, which has been identified as central to disability-related trauma (watermeyer & swartz 2016). another participant’s experience also reflects abandonment, but this time from her social circle, as she shared: ‘yes, my high school friends. i tried reaching out to them, but they just ignored me. very sad. ey, we were so close to each other.’ (ms sithole) in contrast to the older participants, ms sithole described receiving more familial support, which is very important to counteract the rejection she describes. she described feeling secure when at home. it may be the case that older people with more familial responsibility experience greater disruption of their familial belonging during the onset of impairment. sub-theme 1.2: cultural and social beliefs participants described the attitudes they encounter in the community, which appear to be based on a negative view of disability as holding no social value and as connected to moral transgressions (donkor 2011; ngubane-mokiwa 2018). one participant, for instance, said: ‘there are certain things that the birth of a disabled child is culturally associated with. if, for example, two related individuals slept together and conceived, there is a high likelihood that the child will bear a certain form of disability.’ (mr ceba) such beliefs can further the stigmatisation of people with disabilities, which, after all, is quite often seen through the lens of superstition instead of understanding and empathy (ennion & rhoda 2016). participants described being socially ignored and isolated: ‘in my view and experience, people without disability ignore people with disability’. (mr harrison) mr. harrison has been disabled from a young age and suggests here a lifetime of feeling overlooked in his community. similarly, another participant said: ‘it is the attitude, and it persists. people would want to be dissociated with you’. (mr jojo) interestingly, one participant gave a more optimistic account, saying: ‘i have never been discriminated in any form’. (ms sithole) this contradicts the negative experiences of the other participants. a factor here might be age and gender. the older and male participants arguably have more social status and power to lose, which might cause them to experience stigma more keenly. in addition, ms. sithole’s strong support and care within her family (as seen earlier) may contribute to her more positive experience. theme 2: physical barriers participants identified a key barrier to inclusion and participation as being the failure of the government to improve infrastructure, including roads, water and shelter. their accounts highlight not only physical barriers but also how these impact their well-being and sense of community belonging and cause economic constraints. additionally, respondents indicated that community perceptions also limit their involvement: ‘people will also want to disassociate with you and i am not seen at all with the state i am in’. (mr harrison) they point to a culture that too often ignores or stigmatises people living with disabilities. sub-theme 2.1: accessibility and mobility participants recognised that the environment is to blame for their access challenges. one participant explained: ‘i am on a wheelchair … the landscape does not allow this wheelchair to move around’. similarly, another participant shared how navigating the inaccessible landscape could leave him vulnerable and prohibited him from participating in enjoyable community events: ‘i would take the longest route because there is uneven terrain here, and the roads are not wheelchair friendly. so, i woke up early and took a longer route, which is sometimes unsafe because of the thieves who would see a vulnerable being. i love events. like i love music events, i enjoy many things but cannot attend because of the prohibiting factors.’ (mr harrison) furthermore, participants recognised that their rural setting also had implications for access to key services, as one participant shared: ‘the clinics are very far. they are not centralized’. (mr ceba) these experiences align with similar studies into rural access challenges of pwpd (dassah et al. 2018; vergunst et al. 2017). in addition, participants all shared the challenges they face in using public transport, specifically minibus taxis. these are similar to findings from other studies, which cite lack of space, and difficulty transferring from wheelchair to vehicle (vergunst et al. 2015). one of the participants described the following: ‘i use taxis. one of the challenges is getting off my wheelchair and into the taxi and where to fold and place my wheelchair’. (ms sithole) there are also social dynamics at play as participants navigate the inaccessible environment. for instance, one participant described being made to feel like a burden and an inconvenience by fellow commuters: ‘after the divorce, it was difficult for me to move around, especially using public transport; i would hear people complaining that they were late when the taxi stopped for me.’ (ms mqoqi) it is therefore necessary to recognise the reinforcing relationship between physical access and social attitudes in shaping the inclusion and participation possibilities of pwpd (martin 2013). sub-theme 2.2: economic implications or independence physical barriers cause economic constraints, which further limit opportunities for participation. one participant described the added cost he faces due to travelling with a wheelchair: ‘remember, it has financial implications; i will have to pay for three spaces – myself, my assistant, and the wheelchair’. (mr. jojo) similar experiences of accessing public transport have been captured by other studies (vergunst et al. 2015). inaccessible infrastructure also impacts on independence and autonomy in managing one’s finances. as one participant explained about his disability grant payments: ‘no, i do not [withdraw the money myself]; i send someone i trust to withdraw money for me’. (mr harrison) the physical inaccessibility of grant collection points creates a complex web of relational dependencies. when mr. harisson says he must ‘send someone i trust’, it reveals how infrastructure barriers force people with disabilities into potentially vulnerable situations. nevertheless, participants described pursuing economic and educational opportunities. one of the participants shared: ‘i have a small spaza shop selling chips and a few things. my challenge is the space i use, which is the same room i am sleeping in’. (mrs harrison) while the challenge of managing personal and public space might be shared by others in this community, we can assume that running a small business from their sleeping room presents unique challenges for pwpd. similarly, a participant’s sentiment shows the desperation for self-reliance despite physical and economic barriers: ‘so, even now, i force myself to do things for myself. i do not want to stay without doing anything. hence, i am studying against all odds.’ (ms sithole) while this kind of resilience is admirable, we must consider the physical and emotional toll that it might take. scholars argue that society’s expectation for disabled people to demonstrate strength and adaptability can deny them the right to process grief and acknowledge limitations (watermeyer & botha 2025). this emerges further in theme 3. theme 3: biopsychosocial implications the biopsychosocial model highlights the psychological toll of societal attitudes and physical exclusion on pwpd (wade & halligan 2017). it enables us to think beyond the material implications of ableism. sub-theme 3.1: preference for solitude several participants shared that they preferred to withdraw from social life: ‘i lost interest in life as a whole. i do not want to be seen in public anymore’. (mr ceba) recall mr. ceba’s status as a venerated community member before his accident in contrast to his desire not to be seen, perhaps as a diminished version of himself. similarly, another participant shared: ‘i wish i could disappear, and no one would see me’. (ms. mqoqi) these extracts demonstrate the damage that can be done to an individual’s sense of belonging and self, not due to impairment affects alone but due to encountering social stigma (watermeyer & swartz 2016). another participant demonstrated a similar sentiment, coupled with a striving towards independence: ‘i love living my life lonely and not burdening people. even now, i force myself to do things for myself’. (ms sithole) it is worth considering the shift from a bubbly student with an active presence on social media to a person who ‘loves’ loneliness. scholars have suggested that, to escape stigma, it is often necessary for people with disabilities to project maximum resilience and independence regardless of the physical or emotional cost this may demand (watermeyer & botha 2025). we should perhaps question to what extent isolation is a choice versus a necessity for these participants. sub-theme 3.2: personal loss, adaptation and self-reliance the participants spoke about the psycho-emotional adaptation that they needed to undergo after becoming disabled. one participant described a process of denying what was in reality his new norm: ‘i did not immediately accept that i am indeed permanently paralysed. i had hope that my functionality would be restored sometime in the near or distant future.’ (mr ceba) this is a common response to experiencing impairment (watermeyer & mckinney 2022). scholars suggest that newly impaired persons need to adapt not only to a new physical reality but also to a new sense of the world around them, their community and their place within that community (watermeyer & botha 2025). this is further demonstrated by mr. jojo, who reflected on finding himself in a ‘compromising and useless state’, in contrast to his former role as a provider for his family. one participant echoes a sense of loss and a process of grieving and remaking her self-concept: ‘sometimes i feel useless and helpless being unable to do things that i used to do and enjoy … knowing i cannot do what was once pleasurable hurts’. (ms sithole) this is counterbalanced with a demonstration of resilience and proactivity, as we have seen throughout ms sithole’s narrative, as she said: ‘hence, i am studying against all odds’. this implies that the experience of loss is profound, but individuals can find their own adjustments while navigating what she calls their ‘path in life’, thereby demonstrating that personal loss does not always have to spell complete disempowerment. discussion the participants’ accounts emphasise the intersection between physical and social barriers, which shape everyday personal experiences (martin 2013). they suggest that disability in rural contexts is complex and multifaceted due to context-specific societal attitudes, inadequate infrastructure and the lived experience of loss, which accompanies the destabilisation of social and familial roles (watermeyer & swartz 2016). these elements form intersecting systems that contribute to the ongoing marginalisation of pwpd. families often serve as the primary support system when individuals face distress, but disability can strain familial relationships, especially where pre-existing conflicts exist (watermeyer & swartz 2016). the entrance of disability can emotionally and psychologically strain family life, leading to feelings of betrayal and abandonment. however, ms. sithole’s narrative offers a more hopeful view of family dynamics. her emphasis on homecoming reflects a deep sense of belonging within her family, contrasting her feelings of exclusion from the broader society. these varied responses demonstrate that the impact of disability on family interactions is complex and contingent upon individual circumstances and roles. negative experiences in the family are often reproduced in broader community life where disability can be associated with moral failure (donkor 2011; ngubane-mokiwa 2018). such beliefs reinforce harmful stereotypes, perpetuating stigma and marginalisation and leading to isolation for pwpd (babik & gardner 2021). however, experiences of disability-related stigma are not uniform. ms. sithole, for instance, did not perceive any discrimination against her. experiences are therefore not monolithic and should not be assumed to be the same. physical barriers exist in a reinforcing relationship with these familial and social dynamics. in rural areas, there are particular access challenges due to the terrain, inadequate infrastructure and remoteness, meaning that facilities are often a distance away (dassah et al. 2018; vergunst et al. 2017). people with physical disabilities are often in vulnerable situations as a result, facing risks to their safety and health and encountering negative and belittling attitudes of the community that may view them as burdensome. physical barriers go beyond this, though, as they also have significant socioeconomic consequences. lack of accessible infrastructure exacerbates social isolation, limits participation in community activities and limits opportunities for income generation, both formal and informal (mitra & palmer 2023). the economic challenges associated with physical disabilities are pronounced. many pwpd face additional costs related to their disability, such as specialised transportation or home modifications. some extra expenses can be viewed as inherently ableist, such as the requirement to pay to take a wheelchair onto public transport (vergunst et al. 2015). despite these challenges, there are also examples of agency and resilience among pwpd. some, like mr. harrison, have developed strategies to achieve a degree of financial autonomy, illustrating the importance of self-dependence and flexibility in overcoming economic barriers. the impact of disability extends beyond the interaction of physical impairment with the environment to include psychological and social dimensions (wade & halligan 2017). each participant had undergone a social transition as a result of their impairment, causing them to make certain choices about how to interact with the community (watermeyer & botha 2025). several described seeking solitude to cope with this transition, to avoid stigma, pity and discomfort in social situations. for example, mr. ceba and ms. mqoqi described their desire to retreat from the public gaze. this response echoes engel’s (1977) view of the psychological cost of living with a disability in societies that are not fully accepting. isolation is often a rational response to stigma on the part of pwpd. however, coping strategies are influenced by factors such as the availability of social support networks and accessible facilities and services. gondwana and stewart (2013) emphasise that societal attitudes and environmental exclusion have a significant psychological impact, which aligns with the participants’ preference for solitude as a coping mechanism. part of providing social support may be to enable individuals to process personal loss (watermeyer & botha 2025; watermeyer & swartz 2016). participants shared the sense that the onset of their impairments represented a significant loss to them. loss is seldom discussed in ways that are transformative for pwpd (watermeyer 2013). it is suggested that to move through loss into life with disability, individuals need to be enabled to speak about and share their emotions related to impairment and disability (watermeyer & botha 2025). equally, people with disabilities’ right to inclusion and participation on an equal basis with others must be safeguarded. botha et al. (2023) assert that seeking to address disability inclusion without properly considering the root causes of exclusion, such as stigma and resource inequities based on ableist constructions of disability, is superficial. recommendations these are implications from the participant experiences that portray the challenges that pwpd in rural areas go through daily, physically, socially, economically and emotionally: infrastructure development: the need for better accessibility in public places emerged as a paramount concern among the participants. this finding reflects other studies (dassah et al. 2018; ennion & rhoda 2016; vergunst et al. 2017). targeted infrastructure improvements are urgently needed. local authorities should ensure infrastructure improvements, including wheelchair-friendly pathways and accessible public buildings. furthermore, accessible public transport should be developed. there is also a need to root infrastructure development in community awareness on the rights and community contribution of pwpd. community education: the study brought to light lingering negative cultural beliefs and stigma towards people with disabilities, causing experiences of isolation, abandonment, rejection and exclusion. this justifies the recommendations by ned (2019) and ohajunwa and sefotho (2024) on the need to infuse indigenous knowledge and culture into health-related curricula. given the cultural significance of traditional healers in rural areas, train them to advocate for inclusion and challenge harmful beliefs about disability, bridging traditional and modern approaches to inclusion. broader community awareness programmes, especially for the young, are also recommended to foster inclusive behaviour from an early age, breaking the cycle of stigma in future generations. these efforts should ideally involve collaboration among community leaders, health professionals, traditional healers and, crucially, pwpd. the ubuntu ethic should be utilised as a lens through which communities can view disability and the value of people with disabilities in community life (dwadwa-henda et al. 2025). family support: the family is a central pillar of support for pwpd but can experience strain. support for the whole family is required, and it is important for realising the rights of the pwpd (mji et al. 2009; naidoo & ennion 2018). family support services could include forming support groups, offering counselling services and providing practical skills training on caregiving, care for the carer and on disability and social justice. economic empowerment: programmes promoting economic independence are needed. naidoo and ennion (2018) note that in rural areas in south africa, pwpd are often held in a cycle of ‘disability, immobility and poverty’. interventions such as vocational training, microfinance initiatives, support for entrepreneurship and economic support for families are needed to break this cycle. it is important that these initiatives are responsive to local economic demand and contextual factors. they should be designed in collaboration with local business and pwpd to meet both market and individual needs. it is also important that existing rural economic development programmes include access for pwpd (grech 2016). intersectional factors related to gender, age, and community status and role should be considered (ohajunwa & mji 2021). it is also recommended that future studies be directed at assessing the effectiveness of such interventions and investigating their applicability in various rural contexts of south africa. conclusion this study portrays the serious challenges of infrastructural barriers, persistent cultural stigma and economic hardships in the way of full social inclusion and participation. yet, it simultaneously uncovers the resilience and adaptability of pwpd to surmount these hurdles with determination and, in many instances, find ways of asserting their independence and contributing to their communities. this study, therefore, shows the need for a holistic approach, which is essentially biopsychosocial, in understanding and addressing disability issues in rural settings in south africa. a central conclusion is that policies and interventions that affect the lives of people with disabilities in these settings must be anchored around their voices and experiences, as well as responsive to geographical, socioeconomic and cultural contexts (ohajunwa & mji 2021). these findings suggest that in the development of policies and interventions around disability, local cultural beliefs and practices are pivotal. the study indeed brought to light how such traditional beliefs of disability may firmly bear upon the level of social inclusion and participation, raising the need for culturally sensitive initiatives meant to raise awareness about and foster inclusivity towards pwpd. the results also affirm the applicability of the biopsychosocial model to research on disability in rural settings, as discussed by wade and halligan (2017). considering the interaction of physical barriers, social attitudes and personal psychological responses, this study has demonstrated how the experiences of people with disabilities can be complex and multifaceted. it further builds on the work of mitra and palmer (2023), who explored disability and labour market outcomes in developing countries. this study depicts how factors such as gender, age, economic status and geographical location intersect with disability to create uniquely different challenges and experiences for pwpd in mount frere. it reinforces the necessity of prioritising the individual voices and stories of people with disabilities in research and particularly in contextually diverse rural settings (sadiki, watermeyer & abrahams 2021). the limitations of the study include: while the study has given rich data on individual experiences in-depth, it cannot represent the complete experiences of pwpd in mount frere or other rural settings because of the small number of participants. this limitation is particularly relevant given the diverse nature of disabilities and the different socioeconomic backgrounds represented in the region. the fact that this study only focused on one rural town limits its universality. sadiki et al. (2021) clarify that experiences can vary significantly across rural settings. mount frere’s specific cultural, economic and infrastructural features may not be characteristic of other rural areas in and outside south africa. moreover, the absence of comparative data from urban settings or other rural areas raises limitations in distinguishing those aspects of experiences that are unique to mount frere and those that are more widely generalisable. these further raise the importance of multi-pronged investigations across different settings, rural and urban, as an attempt towards comprehensive insights into the experiences of pwpd in south africa. acknowledgements we wish to acknowledge those who participated in this research study. thank you for sharing your experiences with us. this article is partially based on the author’s thesis entitled “the experiences of inclusion and participation of people with physical disabilities in mount frere, eastern cape” towards the degree of mphil in human rehabilitation in the department of global health, stellenbosch university, south africa on 25 march 2025, with supervisor dr michelle botha. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. the author, m.b., serves as an editorial board member of this journal. the peer review process for this submission was handled independently, and the author had no involvement in the editorial decision-making process for this manuscript. the author has no other competing interests to declare. authors’ contributions y.m. conceptualised the project, gathered and analysed data and wrote the original draft with support from m.b. m.b. supervised the research project and provided support with the write-up and editing of the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data 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acknowledgements references about the author(s) bazondlile d. marimbe department of psychiatry, college of health sciences, university of zimbabwe, zimbabwe research department of infection and population health, university college london, united kingdom frances cowan research department of infection and population health, university college london, united kingdom centre for sexual health and hiv/aids research: zimbabwe, zimbabwe lazarus kajawu department of psychiatry, college of health sciences, university of zimbabwe, zimbabwe florence muchirahondo department of psychiatry, college of health sciences, university of zimbabwe, zimbabwe crick lund alan j flisher centre for public mental health, department of psychiatry and mental health, university of cape town, south africa citation marimbe, b. d., cowan, f., kajawu, l., muchirahondo, f. & lund, c., 2016 ‘perceived burden of care, and reported coping strategies and needs for family caregivers of people with mental disorders in zimbabwe’, african journal of disability 5(1), a209. http://dx.doi.org/10.4102/ajod.v5i1.209 original research perceived burden of care and reported coping strategies and needs for family caregivers of people with mental disorders in zimbabwe bazondlile d. marimbe, frances cowan, lazarus kajawu, florence muchirahondo, crick lund received: 31 july 2015; accepted: 23 mar. 2016; published: 24 aug. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: mental health service resources are inadequate in low-income countries, and families are frequently expected to provide care for their relative with a mental disorder. however, research on the consequences of caregiving has been limited in low-income countries, including zimbabwe. objective: the study explored the perceived impact of mental illness, reported coping strategies and reported needs of the family members of persons diagnosed with bipolar affective disorder or schizophrenia attending a psychiatric hospital in harare, zimbabwe. methods: a purposive sample of 31 family members participated in in-depth interviews and focus group discussions using standardised study guides. participants were also screened for common mental disorders (cmds) using the 14-item shona symptom questionnaire. qualitative data were analysed thematically using nvivo 8 qualitative data analysis software. statistical package for social sciences (spss version 16) was used for descriptive quantitative data analysis. results: caregivers experienced physical, psychological, emotional, social and financial burdens associated with caregiving. they used both emotion-focused and problem-focused coping strategies, depending on the ill family members’ behaviours. seeking spiritual assistance emerged as their most common way of coping. twenty-one (68%) of the caregivers were at risk of cmds (including three participants who were suicidal) and were referred to a psychiatrist for further management. caregivers required support from healthcare professionals to help them cope better. conclusion: caregivers of patients attending psychiatry hospitals in zimbabwe carry a substantial and frequently unrecognised burden of caring for a family member with a mental disorder. better support is needed from health professionals and social services to help them cope better. further research is required to quantitatively measure caregiver burden and evaluate potential interventions in zimbabwe. introduction problem statement caring for a family member with a mental disorder places an enormous burden on family caregivers and has been shown to have a significant impact on the family’s quality of life (hsiao et al. 2006; saunders 2003). however, the extent of this burden is often difficult to assess and, partly as a result of these measurement difficulties, is frequently ignored (who 2011a). mental health service resources are inadequate in lowto middle-income countries (lmics), in contrast with high-income countries (hics), where community-based resources such as halfway homes and day-care centres are relatively more available (who 2011b). zimbabwe follows the trend in many lmics, with major deficits in mental health services (ministry of health and child welfare 2005; osaka et al. 2010). trends whether due to the lack of mental health service resources in lmics or the history of deinstitutionalisation in many hics, the burden of care for people with severe mental disorders frequently falls on family members and the communities in which they live (hsiao et al. 2006; saunders 2003; yip 2004). families worldwide are inadequately supported to provide care and support for their relatives with a mental disorder and struggle to look after them (doornbos 2002; leung, au & lee 2010; magliano et al. 2005; yip 2004). in addition to the lack of resources, stigma forms an important part of the experience of people living with mental illness and their family caregivers, including in sub-saharan africa. seventy-five per cent of family members of individuals with schizophrenia reported being stigmatised in ethiopia, with over one-third (37%) wishing to hide a member with mental disorder (shibre et al. 2003). stigma has often resulted in strained relationships within the families themselves as well as affecting relationships with neighbours and the society at large (struening, perlick & link 2001; yang 2007) and this difficulty has been attributed to misunderstanding of mental illness aetiology (shibre et al. 2001). stigma is linked with depressive symptoms among the family caregivers of individuals with a mental disorder (perlick et al. 2001; phelan, bromet & link 1998). a review by steel et al. (2010) in the usa that sought to assess the psychiatric symptoms in caregivers of persons with bipolar affective disorder showed that 46% of them were depressed, and 32.4% reported using health services themselves. coping refers to cognitive and behavioural efforts aimed at managing a troubled person–environmental relationship (lazarus & folkman 1985). this includes any response to external life strains that serves to prevent, avoid or control emotional distress and keep an individual away from damage from life strains (lazarus & folkman 1985). coping is related to both the state of one’s inner emotional life and life strains; it depends on subjective well-being, social functioning and somatic health, as well as the relevance placed on these by an individual at any given time (lazarus & folkman 1985). coping is better explained using the transactional model of stress and coping, which emphasises the appraisal to evaluate harm, threats and challenges, resulting in the process of coping with stressful events (lazarus & folkman 1984). coping strategies are summarised under two broad patterns of coping, namely problem-focused and emotion-focused coping mechanisms. problem-focused coping aims at tackling a problem directly by changing an aspect of a situation, whereas emotion-focused coping attempts either to change the way the stressful environment is viewed or to change the personal meaning of the situation, resulting in separation from the event, escape-avoidance or seeking social approval (lazarus & folkman 1984). both emotion-focused and problem-focused coping strategies are used by caregivers of family members with a mental disorder, with the strategy being determined by demographic attributes of the ill members and caregivers (magliano et al. 1999). coping strategies can also be classified as being either positive or negative. positive thinking and the utilisation of appropriate social supports such as family, friends and the church are some of the aspects of positive coping strategies (perlick et al. 2004), whilst use of avoidance behaviours, negative thinking and substance abuse are some of the examples of negative coping strategies (menha 2005). in addition to the above coping strategies, caregivers of family members with either bipolar affective disorder or schizophrenia have been found to require emotional support, psychoeducation and information about the illness for them to effectively provide care and support to their mentally ill relatives (chakrabarti & gill 2002). support groups and counselling have also been found to be helpful in reducing caregiver burden (mittelman et al. 2006). although there is burgeoning literature on the impact of mental illness on families in hics, as indicated by aschbrenner, greenberg and seltzer (2009) and moller et al. (2009), there is still a paucity of published data from low-income countries such as zimbabwe. studies have been limited to describing the patient’s illness, such as depression (abas & broadhead 1997). aim of the study we therefore set out to assess the impact of caring for a family member with a mental disorder, as well as the coping strategies and needs among zimbabwean families of people with mental disorders. contribution to field such data would contribute towards designing culturally sensitive interventions to improve the well-being of caregivers and hence mentally ill people in zimbabwe. methods and design setting the study location was one of the two major referral psychiatry hospitals in harare, the capital city of zimbabwe. this unit caters for over 200 outpatients per week and has an admission capacity of 36 beds for adults. service users are referred to this hospital from primary healthcare facilities, regional hospitals and surrounding rural areas. it caters for half of the population of harare, which is 2 123 132 (population census office 2012). study design the study used mixed methods, combining both qualitative and quantitative techniques to allow for triangulation of the data, thereby increasing the validity of the findings. an exploratory qualitative approach was taken in an attempt to understand caregiver experiences of caring for a relative with a mental disorder, their coping mechanisms and needs. we adopted this approach as it allows for an opportunity to ‘see through the eyes’ of our participants, a viewpoint that has also been supported by hedegaard hakkarainen and engestrom (1984). participants were also screened for common mental disorders (cmds) using the 14-item shona symptom questionnaire (ssq 14) (patel et al. 1997). the quantitative data helped to ascertain the magnitude of the psychological morbidity among caregivers, which would have not otherwise come to light. recruitment procedure participants were purposively selected. they were adult family members who were the primary caregivers of persons diagnosed with schizophrenia or bipolar affective disorder and had accompanied their relatives for either review or admission. all provided written informed consent. we sampled for maximum variation, sampling for diversity across socio-demographic factors and relationship to the patient (sibling, parent, spouse, aunt and children). to recruit participants who met the inclusion criteria, psychiatric nurses working in the unit were asked to identify family members who were waiting in the outpatient clinic with their relative (with a diagnosis of either schizophrenia or bipolar affective disorder) and to refer them to the researcher. all participants were informed about the study and were recruited in line with good clinical practice and asked to sign informed consent. verbal consent was obtained from the family member with schizophrenia or bipolar affective disorder. instruments and procedure a structured in-depth interview guide was developed in shona and used during the individual in-depth interviews with follow-up probes. the questions were open-ended and explored the participants’ experiences of having a relative with a mental disorder; how the illness had affected the family in terms of finances, socialising and their general physical health; any stigma experienced; how they had been coping with the illness; and what kind of support they needed and from whom. interviews took place over a period of 2 months (august and september 2012). sampling was discontinued after nine in-depth individual interviews (idi), due to information saturation. three focus group discussions (fgds) were conducted using a structured topic guide to triangulate and further explore the findings from the in-depth interviews. the fgds lasted approximately 1 hour and had six to nine participants. the focus group topic guide explored similar themes to those in the in-depth interviews. all participants completed the self-administered ssq 14 after the interview. the ssq 14 was developed and validated as the first indigenous measure of cmds in the shona language in zimbabwe by patel et al. (1997). the specificity and sensitivity occurred at a cut-off point of 7/8. the 14-item ssq has a high level of internal consistency (cronbach’s alpha = 0.85). each positive response is given a score of 1, with a maximum score of up to 14. the cut-off point for caseness is a score of 7 or above, and those scoring below are considered to be at low risk for developing cmds. individuals who score > 8 are considered at risk of cmds; those who score 11 or above are at risk of severe cmds. the total score correlates strongly with patients’ self-assessment of the emotional nature of their illness. data management and analysis interviews were audio recorded and transcribed verbatim in shona and then translated into english. transcripts were entered into nvivo 8 (qsr international, melbourne australia), a qualitative data storage and retrieval program to facilitate analysis. data were analysed using a thematic approach (familiarisation, identifying a thematic framework, indexing, charting, mapping and interpretation) (smith & firth 2011). a constant comparative method was used to identify the domains and subthemes emerging from the transcripts. quantitative data obtained from the ssq was captured using epi info 7 and analysed using statistical package for social sciences (spss), version 16. the pearson correlation test for association was conducted at a significance level of α = 0.05. simple descriptive statistics were conducted using spss. ethical considerations ethical approval was obtained from the joint research ethics committee at the university of zimbabwe college of health sciences (ref: jrec/156/12), medical research council of zimbabwe (ref: mrcz/b/385/12) and the university of cape town faculty of health sciences human research ethics committee (ref: 262/2012). written permission was obtained from the matron in charge of the psychiatry unit. a private room was used for the interviews to ensure privacy and confidentiality. participants were allocated unique identifiers, which were used instead of names in order to maintain confidentiality. interview notes, consent forms and the audio recorder were kept in a locked cupboard for the entire study period to maintain confidentiality. data were stored on a password-protected computer. results thirty-one family members (9 in the in-depth interviews and 22 in the fgds) participated in the study. the mean age of the respondents was 44 years (range 22–69 years). twenty-one (68%) were female and of these 11 (35.5%) were mothers to the patients, as shown in figure 1 below. eighteen participants (68%) lived in townships whilst 13 (42%) lived in low-density suburbs. the socio-demographic characteristics of participants are shown in table 1. figure 1: relationship of caregiver to the patient. table 1: socio-demographic characteristics of the respondents. perceived impact of mental illness, coping strategies and needs six broad themes characterised the impact of mental illness on the family members. these were physical harm/illness, psychological and emotional impact, financial burden, material burden, social factors and stigma. the coping strategies used were seeking spiritual assistance, from the church and traditional healers; confrontation; resignation; and alcohol use. physical harm/illness participants reported caregiving to be a challenging experience, as some of their family members living with mental illness became both physically and verbally aggressive to their caregivers, particularly when psychotic. as one participant stated: ‘yes, it has affected us especially my husband he was assaulted and got injured. for me i was once assaulted by him but there is nothing to show but as for my husband he was really hurt.’ (idi, mother, age 45) another participant stated: ‘there was a time when he stopped his medication and got very ill, to the extent that he was very aggressive and would lift up hoes and axes wanting to murder someone.’ (fdg, mother, age 66) less direct physical harm occurred to caregivers as a result of the stress they lived under. caregivers described physical symptoms that they attributed to living with the daily burden of caring for the patient. one participant reported: ‘but now i realise that since i have been back here from the uk, i have lost a lot of weight, i can’t even wear my trousers, they are huge, they are now big, i just have lost so much weight because of the illness of my son and at times i can’t even eat it’s very difficult.’ (idi, mother, age 55) participants reported failing to cope with the demands of the caring process and becoming stressed to the extent that they developed physical illnesses that they attributed to the patient’s illness. as one participant said: ‘i felt as if my hearing was impaired by the constant noise and today my back is painful – i have problems standing up in the mornings. my legs and my body – it’s like they have been dismantled, and i am always alone when my son relapses and starts shouting and beating everyone.’ (fdg, mother, age 54) another participant also explained how she had developed high blood pressure. ‘i was really affected a lot, because when we were staying with him he was always threatening that he would murder someone, several times the whole night. this affected me and i started having high blood pressure.’ (fdg, mother, age 61) psychological/emotional impact the psychological impact evident among the participants was the frequently used shona idiom of distress: kufungisisa. this shona term is translated as ‘thinking too much’ and is frequently associated with depression (patel et al. 1997). as the following participant said: ‘now i am always thinking too much and thinking for how long i will carry on looking after an adult. this is really eating me inside; you can’t be happy as a family when someone is not feeling well within the family.’ (idi, mother, age 60) one participant mentioned that she had noticed her child not meeting the same milestones as her child’s peers: ‘i can’t stop thinking too much, like you were given a child by god and you see him grow nicely and all of a sudden the child changes; especially when i see his peers, i see that my child would be doing this and that, but now he can’t – it’s really painful … ’[starts crying] (fdg, mother, age 45) financial/material impact financial burden was expressed by many caregivers. it took several forms. for some, financial burden was experienced as a result of the caregivers having to leave their jobs in order to take on a caregiving role. ‘me, i used to do things on my own to get money and never used to stay at home. i would go out to my aunt, who has a tailoring business, but i left everything to come here and stand by my son’s side.’ (idi, mother, age 48) caregivers stated that, although treatment is free at government psychiatry hospitals, some had to buy medication for the patient, as it was frequently unavailable at the hospital. ‘money is a problem, but you struggle as a parent to buy medications – but it’s hard and the father says we should spend even if we don’t have if it is going to benefit our child’. (idi, mother, age 45) social factors participants reported rejection by relatives because of their family member’s illness. a mother described how she was rejected by her mother and her own siblings due to her son’s illness and related disruptive behaviour. some participants reported being unable to attend social gatherings because they had no one to leave the patient with, as relatives were not willing to assist with the care of the patient. stigma caregivers reported being ostracised and isolated. they expressed that there was a lot of stigma associated with mental illness, which they attributed to lack of knowledge on the part of their relatives and the community at large. people in their communities believed that if you had mental illness you were a sinner. women reported being blamed for the illness and being accused of bringing the illness into the home. one of the participants said: ‘from the time it started, my husband said: “this is from your family because in our family we have never encountered such things, and it’s you who brought it to the family.”’ (fdg, mother, age 55) coping strategies the most commonly used coping strategy was seeking spiritual assistance from both traditional healers and faith healers. this was frequently informed by the belief that the problem was linked to witchcraft. this was done to manage the patients’ symptoms and to allay the caregivers’ anxieties about the causes and progression of the illness. ‘it’s true we looked for help from prophets and ngangas [traditional healers], but it was her father who did that when he was still alive.’ (idi, mother, age 63) some participants reported using confrontation to cope, whereby they shouted at the patient. as one participant said: ‘i shouted at him twice to say shut up, and he says, “do you want to hit me?” and i was really fed up with his behaviour and useless talk.’ (idi, brother, age 36) in other instances, the carers would ignore or avoid the patient. as one participant said: ‘yes, i avoid the patient. i just go outside, because he doesn’t show respect to anyone, and i have come to a stage where i say i can’t live with him anymore – there is no peace. i am sorry, i cannot live with him anymore.’ (idi, mother, age 56) caregiver needs caregivers required financial assistance either from the government or donors (well-wishers). support groups some strongly felt that support groups for patients and caregivers would help them cope better. they went on to explain how support groups had been successful for people living with hiv/aids and felt that if they were to do the same for the mentally ill it would help. as one participant said: ‘if they do support groups like the one for people living with aids, it will be fine. those people with hiv support each other, so we can also support each other.’ (fdg, mother, age 61) training caregivers said they required training to deal with psychological problems. they expressed a lack of knowledge about the condition their relatives were suffering from, because it was never explained to them. they wanted written materials so that they would read and have knowledge of the signs and symptoms of the condition. one participant said: ‘written information is also helpful. there is someone who once gave me a book about this illness, and it helped me a lot; [now] we know that if [things] go this way, we do it this way.’ (fgd, brother, age 36) participants wanted doctors and nurses to have more time with them to explain the condition and explore the challenges they were facing in caring for their ill relative. as one participant said: ‘i think the time that we get with doctors and nurses is very limited, in such a way that you won’t understand what is going on. if you get into a session for 5 minutes, it becomes difficult to ask questions, and you are not told how you have to stay with the patient. i think that is a major challenge. i wish we could be given more time to be helped as carers and on how you are going to cope.’ (fdg, sister, age 22) provision of hope participants also wished to be given hope by the health professionals. they said that having someone talk to them and reassure them can allay their anxieties. ‘we want to be given hope just to say things will be better, things will be fine, don’t worry too much there are people with such conditions that have gone back to work, hope is important.’ (idi, mother, aged 49) of note, the majority of caregivers said that this was the first time that they had been asked about how caring for their relatives was affecting them. as one participant said: ‘i have never been asked about how i feel about caring for my child, this is the first time and i wish there could be more people doing this.’ (idi, mother, aged 58) shona symptom questionnaire results all 31 participants (100%) completed all 14 items of the ssq, as shown in table 2. twenty-nine (93.5%) reported having times at which they were thinking deeply or thinking about many things within the past week. three (9.7%) of the respondents had suicidal ideation and a score of between 10 and 12 for cmds. two were patients’ mothers, 53 and 54 years old, whilst the third was a sister aged 33 years. table 2: shona symptom questionnaire (ssq) results. ten participants (32.3%) were at a low risk of cmd, whilst 11 (35.4%) were at moderate risk and 10 (32.3%), including three with suicidal ideation, were at high risk of severe cmd, giving a total of 21 (67.7%) participants being at risk of cmds as shown in table 3. the participants at moderate and high risk were referred to the psychiatrist for further assessment and management. there was a significant positive association between female gender and being at risk of cmds (p = 0.023). table 3: shona symptom questionnaire (ssq) total cmd scores for participants (n = 31). discussion outline of the results this study highlighted the impact, coping strategies and needs of individuals caring for family members with bipolar affective disorder and schizophrenia in harare, zimbabwe. despite having interviewed caregivers for both schizophrenia and bipolar affective disorder, data suggested that overall the impact, coping and needs of the caregivers of these patients were similar. the majority (68%) of the participants were female and of these 35.5% were mothers. this supports the findings of mhaule and ntswane-lebang (2009) in mpumalanga province of south africa and nasser-hassan et al. (2011) in egypt, who found that most caregivers (67% and 75%, respectively) were female. the role of women as caregivers is deeply rooted in cultural gender roles and traditional concepts of family life (digiloramo & salgadode de snyder 2008). women’s caregiving is accepted as the norm in many cultures (chitayat 2009), although the caring process can be a challenging experience, as patients can be physically and verbally aggressive to their caregivers. caregivers in this study frequently used the shona term kufungisisa (‘thinking too much’) to describe the emotional or psychological impact of living with a relative with mental disorder. thinking too much (kufungisisa) was also reported by participants in a study by abas &broadhead (1997) in their zimbabwean study on depression. numerous studies in hics have shown that family caregiving causes stress and depression (awad & voruganti 2008; wancata et al. 2006). management of psychological distress among caregivers requires a multidisciplinary approach and consideration of the cultural context of the caregiver as well as the family member. there is an urgent need to come up with supportive interventions in the form of educating the family on the condition as well as exploring the potential impact of mental disorders on caregivers in resource-limited settings, a recommendation that was made by shibre et al. in 2003. group psychoeducation sessions could be helpful for maximising limited time and human resources. however, the limitations of family education need to be acknowledged; the findings from a study by sefasi et al. (2008) in malawi revealed that knowledge about the condition did not reduce caregiver burden. caregivers described financial burdens, which had a variety of forms and effects. this supports a finding by shibre (2003) in ethiopia that revealed that 74.4% of caregivers suffered financial burden and female relatives were more affected than males. eighteen (68%) of the participants lived in townships, which are associated with low-income earners in zimbabwe (nkomo 2003). the findings on financial burden indicate the way in which carers frequently forego economic opportunities in order to take on caregiving roles, a pattern that can further entrench the poverty of a given household. following the implementation of a community mental health programme by basic needs in rural kenya, caregivers were able to take on income-generating roles, which were associated with significant increases in mean household income (lund et al. 2013). this model could similarly be introduced in zimbabwe to ease the financial burden on caregivers. caregivers reported being socially ostracised and reported a great deal of stigma associated with mental illness, which they attributed to lack of knowledge among their relatives and the wider community. this supports the findings by shibre et al. (2003) in ethiopia, who found that stigma associated with mental illness results in strained relationships within the families themselves, as well as difficult relationships with neighbours and the society at large. this problem has been attributed to the misunderstanding of mental illness aetiology (shibre et al. 2003). stigma has been found to be linked with depressive symptoms among the families of patients with mental illness (lauber & rossler 2007; perlick et al. 2001), which is further supported by the findings of this study. there is a need to include other household members and community members more widely in health education about the causes of mental illness in order to reduce the stigma, blame and rejection that caregivers (and people suffering from mental illness) face in the community. the caregivers who participated in this study used both emotion-focused and problem-focused coping strategies. this supports the findings of ganguly, chadda and singh (2010) in their qualitative study, the results of which revealed that coping strategies were the same in caregivers of bipolar disorder and schizophrenia. the caregivers’ most commonly used coping strategy was seeking spiritual assistance from traditional healers and faith healers, because they believed that their relative’s mental disorder was linked to witchcraft. this supports the findings of the study by shibre et al. (2001) on the perceived causes of severe mental illness and preferred interventions in ethiopia, which revealed that mental illness was believed to be caused by witchcraft and that prayer was one of the interventions commonly used to cope with the conditions. although the lay public and some caregivers of people with mental illness in zimbabwe believe in witchcraft and supernatural powers as a cause of mental illness, biomedical models are now being considered. medical management is now believed by many to complement the indigenous healing methods (saravanan et al. 2008), as shown in this study. caregivers stated that support groups for both patients and caregivers could help them cope better. support groups have been found to provide an opportunity for caregivers to share their experiences with people who are facing the same challenges (mittelman et al. 2006). another helpful ingredient mentioned by study participants is the provision of hope. in recognising and embracing the value of hope in coping with adverse situations and managing the uncertainty inherent in many chronic illnesses, the nursing profession most notably have been charged with the responsibility to inspire and engender hope in patients (jevne & nekolaichuk 2003). mental health practitioners could be trained to impart hope in caregivers, as well as teaching caregivers appropriate coping skills as routine care. this will require practitioners to spend more time with both patients and caregivers. the findings of jonsson et al. (2010 in canada revealed that hope was crucial for family members living with a family member with mental illness, a finding also supported by bland and darlington (2002). of particular note is that the majority of caregivers in this study expressed that this was the first time they had been asked about how caring for their relatives was affecting them. this finding is likely an indication of their sense of isolation and lack of support. this may also indicate competition between the caregivers and the patients for care and attention from the healthcare professionals. the findings of this study point to a number of recommendations. firstly, healthcare workers need to pay more attention to the needs of caregivers by providing them with information and counselling as routine care. this recommendation was also made by shibre et al. (2003) in their cross-sectional study on caregiver burden in ethiopia. caregivers of patients with both bipolar affective disorder and schizophrenia have been found to require emotional support and psychoeducation for them to effectively provide care and support to their mentally ill relatives (jonsson et al. 2010; mangliano et al. 2000 mehra et al. 2005). psychoeducation has been shown to be effective for family support in schizophrenia in many other settings and could also be adapted to be culturally sensitive in zimbabwe, as well as potentially other countries in sub-saharan africa. a second broad recommendation pertains to broader health system changes. there is a critical shortage of mental health professionals in zimbabwe. task shifting may potentially be effective in alleviating this critical shortage of human resources in mental health (fulton et al. 2011). lay community workers have the potential to provide psychosocial and psychological interventions as part of the primary and secondary prevention of mental, neurological and substance use (mns) disorders in lmics (mutamba et al. 2013), and they can be used to support patients and caregivers in the community through identification of signs of relapse and providing psychoeducation, among other things. adequate training and supervision of these non-specialised cadres by specialised cadres is essential for them to effectively support mental health services. family caregivers can also be involved in detection of mental health disorders and to encourage their relatives to go for treatment early. this has been done successfully in india as well as in chile and has been shown to reduce caregiver burden (srinivasa et al. 2005). the strength of this study is that it presents new knowledge on the experiences of family caregivers of patients with mental disorders who are attended to in psychiatry hospitals and their coping strategies and needs in zimbabwe. this area has received very little prior research attention. furthermore, by combining qualitative and quantitative methods we were able to triangulate the data and validate our findings: the subjective qualitative reports regarding caregiver burden were clearly evident in the level of psychological distress measured on the ssq. there are a number of limitations to our study. firstly, the sample size was small and participants were purposefully selected; therefore their views may not reflect the views of all the caregivers of patients with mental disorders in zimbabwe. secondly, we did not collect information on the ages of the family members living with a mental illness. thirdly, we did not enquire about violent behaviour by caregivers towards their mentally ill relatives. fourthly, the study population was also that of a minority who had access to a psychiatry referral hospital, which might not reflect the challenges and needs of those who have no access to psychiatry services. the participants were the relatives of patients attending a referral centre, who might therefore have more severe illnesses, thereby increasing the caregiver burden. compared to the catchment area of the hospital, the number of beds and outpatients services is grossly inadequate for the needs of the population it serves. this might reflect that there could have been a number of patients in the community who were not able to access services in this hospital, which might increase the likelihood of their caregivers experiencing more burden. fifthly, the study was done in an urban setting, thereby affecting generalisability to rural settings. in light of these limitations, it is therefore recommended that future studies address these limitations and, among other approaches, quantitatively measure burden in more representative settings. despite the limitations, our findings indicate that it is critical to address the needs of caregivers in order to help them provide adequate support to their family members and prevent the occurrence of cmds. the findings have generated hypotheses for more research to quantify the impact of mental disorders on caregivers across zimbabwe, including those who are not able to get access to psychiatric hospitals. intervention studies with robust designs, such as randomised controlled trials, need to be conducted to assess the effectiveness of psychoeducation and other supportive interventions for caregivers in the care of family members with mental disorders in zimbabwe. task shifting through use of lay workers has been found to be potentially effective in the provision of mental health services in other countries and therefore may be effective as an intervention to support caregivers in the community in zimbabwe. conclusion caregivers of patients attending psychiatry hospitals in zimbabwe require support from healthcare professionals to help them cope with caring for their family members with a mental disorder. these findings are useful for policy formulation to redesign or resuscitate appropriate mental health intervention strategies for caregivers of patients with mental disorders in zimbabwe. acknowledgements we would like to acknowledge the africa focus on intervention research for mental health (affirm) for providing support for this research, and the university of cape town department of psychiatry and mental health and the university of zimbabwe college of health sciences for their support. we thank the caregivers and patients who participated in the study, as well as parirenyatwa hospital authorities for supporting this research, mr. webster mavhu for assisting with data analysis and helen jack for editing the paper. financial support the research reported in this publication was supported by the national institute of mental health of the national institutes of health under award number u19mh095699. the content is solely the responsibility of the authors and does not necessarily represent the official views of the national institutes of health. for more information on affirm, please visit the affirm website: www.affirm.uct.ac.za. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions b.m.d. drafted the protocol and data collection tools and was responsible for all the implementation and data analysis. f.m. and c.l. commented on the protocol, data collection tools and analysis and were involved in writing the paper. l.k. was involved in the data collection and transcription. f.m. was the study psychiatrist and managed all participants who were at risk of cmds. all authors approved the final manuscript. references abas, m. & broadhead, j., 1997, ‘depression and anxiety among women in an urban setting in zimbabwe’, journal of psychology and medicine 27, 59–71. http://dx.doi.org/10.1017/s0033291796004163 aschbrenner, k.a., greenberg, j.s. & seltzer, m., 2009, ‘parenting an adult child with bipolar disorder in later life’, 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switzerland. world health organization, 2011b, mental health atlas, who, geneva, switzerland. yang, l.h., 2007, ‘application of mental illness stigma theory to chinese societies: synthesis and new directions’, singapore medical journal 48, 977–985. yip, k.s., 2003, ‘gender differences in mental illness in hong kong’, administration and policy in mental health 30, 361–368. http://dx.doi.org/10.1023/a:1024093418538 abstract introduction research methods and design results discussion conclusions acknowledgements references appendix about the author(s) israt jahan csf global, dhaka, bangladesh asian institute of disability and development (aidd), university of south asia, dhaka, bangladesh central queensland university, school of health, medical and applied sciences, rockhampton, queensland, australia risad sultana csf global, dhaka, bangladesh asian institute of disability and development (aidd), university of south asia, dhaka, bangladesh francis laryea korlebu teaching hospital, accra, ghana samuel kofi amponsah health information department, christian health association of ghana, accra, ghana frederick inkum danquah st. john of god college of health, duayaw nkwanta, ghana mohammad muhit csf global, dhaka, bangladesh asian institute of disability and development (aidd), university of south asia, dhaka, bangladesh sk. md. kamrul bashar csf global, dhaka, bangladesh asian institute of disability and development (aidd), university of south asia, dhaka, bangladesh hayley smithers-sheedy cerebral palsy alliance research institute, specialty of child and adolescent health, sydney medical school, faculty of medicine and health, the university of sydney, camperdown, new south wales, australia sarah mcintyre cerebral palsy alliance research institute, specialty of child and adolescent health, sydney medical school, faculty of medicine and health, the university of sydney, camperdown, new south wales, australia nadia badawi cerebral palsy alliance research institute, specialty of child and adolescent health, sydney medical school, faculty of medicine and health, the university of sydney, camperdown, new south wales, australia grace centre for newborn intensive care, sydney children’s hospital network, westmead, new south wales, australia gulam khandaker csf global, dhaka, bangladesh asian institute of disability and development (aidd), university of south asia, dhaka, bangladesh central queensland university, school of health, medical and applied sciences, rockhampton, queensland, australia central queensland public health unit, central queensland hospital and health service, queensland, australia discipline of child and adolescent health, sydney medical school, the university of sydney, camperdown, new south wales, australia citation jahan, i., sultana, r., laryea, f., amponsah, s.k., danquah, f.i., muhit, m. et al., 2024, ‘nutritional status of children with cerebral palsy in ghana’, african journal of disability 13(0), a1335. https://doi.org/10.4102/ajod.v13i0.1335 original research nutritional status of children with cerebral palsy in ghana israt jahan, risad sultana, francis laryea, samuel kofi amponsah, frederick inkum danquah, mohammad muhit, sk. md. kamrul bashar, hayley smithers-sheedy, sarah mcintyre, nadia badawi, gulam khandaker received: 17 sept. 2023; accepted: 10 may 2024; published: 31 july 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: limited knowledge on nutritional epidemiology in ghanaian children with cerebral palsy (cp) necessitates a comprehensive investigation for an improved understanding of malnutrition in this population. objectives: we aimed to describe the epidemiology of malnutrition among children with cp in ghana. methods: the study used data collected as part of the ghana cp register (gcpr). the gcpr is an institution-based surveillance of children with cp aged < 18 years in ghana. between october 2018 and april 2020, n = 455 children with cp were registered. data were collected on (i) weight, length or height, mid-upper-arm-circumference of children with cp; (ii) socio-demographic characteristics; (iii) motor type and topography, gross motor function classification system level (gmfcs); (iv) associated impairments; (v) educational and rehabilitation status for each child. descriptive and bivariate analyses were performed. results: mean and standard deviation age of the registered children at assessment was 5.9 ± 4.1 years, and 42.1% were female. two-thirds of the children had ≥ one form of undernutrition (underweight or severely underweight: 38.9%, stunted or severely stunted: 51.2%, thin or severely thin: 23.8%). in the adjusted analysis, low maternal education, gmfcs-iv, speech impairment and epilepsy significantly increased the odds of undernutrition among participating children (aor: 2.6 [95% ci:1.3–5.4]; 2.2 [95% ci:1.0–4.8]; 2.0 [95% ci:1.1–3.6]; 2.9 [95% ci:1.1–7.5] respectively). conclusions: the high malnutrition rate indicates an urgent need for nutrition interventions and translational research to improve nutritional status and prevent adverse outcomes among children with cp in ghana. contribution: our study contributes important data and a framework to develop guidelines and evidence-based interventions for children with cp in ghana. keywords: malnutrition; stunting; underweight; cerebral palsy; disability; children; ghana. introduction nutritional management is complex for children with cerebral palsy (cp) as the motor impairment caused by damage or lesion to the developing brain can adversely affect their food intake, digestion and metabolism (aggarwal, chadha & pathak 2015), thus increasing their risk of malnutrition. cerebral palsy is the leading cause of childhood disability globally (kakooza-mwesige et al. 2017; khandaker et al. 2019). available data suggest that the prevalence of cp is two to three times higher among children in lowand middle-income countries (lmics) such as bangladesh and uganda compared to high-income countries (hics) such as australia and sweden (acpr 2018; kakooza-mwesige et al. 2017; khandaker et al. 2019). children with cp in lmics are susceptible to malnutrition as demonstrated by recent population-based data from bangladesh, indonesia, uganda and nigeria. more than half of the children with cp in those study cohorts were underweight and stunted (jahan et al. 2019b, 2021a; kakooza-mwesige et al. 2015; okunade 2018). a similar high prevalence was reported in one small-scale community-based intervention study in ghana (polack et al. 2018). the study also identified feeding difficulties and severe motor impairment as the predictors of undernutrition in that cohort (polack et al. 2018). nutritional status undoubtedly affects the health and well-being of children with cp. malnutrition was found to be significantly related to increased hospitalisation and decreased social participation in north american children (samson-fang et al. 2002). furthermore, an overrepresentation of severe undernutrition was observed among children with cp who died from infectious causes in bangladesh (jahan et al. 2019a). evidence-based nutrition interventions or support programmes could improve the conditions or prevent such adverse consequences of malnutrition (e.g. low survival probability, high risk of infection and hospitalisation, and low social participation). community-based nutrition interventions hold the potential to improve feeding skills, the nutritional status of children with cp and the quality of life of their caregivers as reported in tanzania and ghana (donkor et al. 2019; mlinda, leyna & massawe 2018). however, robust evidence regarding the epidemiology of malnutrition is crucial to appropriately identify children at the most risk and in need of nutrition intervention programmes for optimal resource use in lmics. there is a knowledge gap in our understanding of the severity and potentially manageable predictors of malnutrition (e.g. socio-demographic factors, gross motor function limitations, feeding difficulties and access to rehabilitation services) among children with cp in lmics from the west african region. in this study, we aimed to describe the epidemiology of malnutrition and identify the potential predictors of malnutrition among children with cp in ghana. research methods and design this study was conducted as part of the ghana cp register (gcpr), an institution-based surveillance of children with cp. participants and settings the study participants were children with confirmed cp aged < 18 years registered into the gcpr between october 2018 and april 2020 from selected tertiary healthcare facilities located in the eastern, ahafo, bono east and ashanti regions. these centres are: (1) salvation army rehabilitation centre in begoro, (2) st. john of god hospital, duayaw nkwanta, (3) holy family hospital in techiman, bono east and (4) komfo anokye teaching hospital in kumasi, ghana. these centres are the leading tertiary health care and rehabilitation facilities in the regions that cater to the service needs of patients from different parts of the country. during routine healthcare services (at the above-mentioned facilities), if health service providers identified a child aged < 18 years with confirmed or suspected cp, then they referred that child to the gcpr team for detailed assessment following a structured protocol (jahan et al. 2021b). a child was only registered in the cp register (i.e. gcpr) if he met the case definition of cp used in the gcpr (jahan et al. 2021b) and had a confirmed diagnosis. all children aged < 18 years with cp who visited the facilities (whether for their initial consultation or follow-up appointments) during the study period were eligible for registration in the gcpr, thus in this study. data collection each child registered in the gcpr underwent detailed neurodevelopmental assessment by a multidisciplinary assessment team including a doctor, physiotherapist, occupational therapist and research officer. during this assessment process, the team collected data on selected variables using a standard protocol and case record form adapted from the global lmic cp register (glm cpr) (jahan et al. 2021b; khandaker et al. 2015). information was collected on (1) socio-demographic characteristics; (2) commonly known risk factors of cp; (3) motor type and topography using a standard protocol (reid, carlin & reddihough 2011a, 2011b); (4) motor severity using the gross motor function classification level (gmfcs) (palisano et al. 2000). the gmfcs has five levels and higher levels indicate more severe motor function impairment. for example, a child with gmfcs level i could walk independently in all settings whereas a child with gmfcs level v would need a wheelchair or assistive device and have limited stability of head and trunk postures or control over leg and arm movements (palisano et al. 2000); (5) presence (yes or no) of associated impairments such as speech, hearing, intellectual, vision impairment and epilepsy; (6) anthropometric measurements and (7) education and rehabilitation status. anthropometric data at the time of registration in the gcpr, data on the following anthropometric measures were collected for each child: (1) weight in kilogram and (2) height or length in centimetres and (3) mid-upper arm circumference (muac) in centimetres for children aged < 5 years. additionally, (4) the date of birth, (5) the date of assessment and (6) gender were documented. three repeated measures (on the same day) were collected for all anthropometric measurements following the world health organization (who) guideline and the average was recorded (who 2008). weight was measured using a digital weighing scale. tared weight (i.e. child’s weight = [weight of caregiver and child together] – [weight of caregiver only]) was measured for very young children and children who could not stand independently because of severe motor impairment. length was measured for younger children (i.e. aged less than 24 months) and height was measured for children aged 24 months and older. furthermore, knee height was measured for children who had joint contracture or scoliosis or involuntary movement (e.g. children with dyskinesia), and the full length or height was estimated using the following formula: height = (2.69 x knee height) + 24.2 (stevenson 1995). mid-upper arm circumference was measured using the standard muac tape. interpretation of anthropometric data all anthropometric data (i.e. weight, height and muac) were compared to the who reference population, and z scores were calculated according to the gender of the child using who anthro and who anthroplus software. we used z scores for the following indices to assess the nutritional status of study participants: (1) weight-for-age (waz), (2) height-for-age (haz), (3) weight-for-height (whz), (4) bmi-for-age (baz) and (5) muac-for-age (muacz). the nutritional status of children was determined using the who standards (i.e. z score > +2sd = overnourished, −2sd to +2sd = normal, ≥ −3sd to < −2sd = undernourished and < −3sd = severely undernourished). children with waz, haz, baz and whz or muacz < −2sd were therefore considered underweight, stunted (chronic undernutrition), thin and wasted (acute undernutrition), respectively, in the bivariate analysis. statistical analysis kolmogorov–smirnov test was used to determine the distribution of continuous data (e.g. age, income and all z scores). furthermore, all continuous data were recoded into categories as needed. the age of the registered children was categorised into four groups, that is, 0–4, 5–9, 10–14 and 15–17 years. descriptive statistics (e.g. mean with standard deviation (sd), median with interquartile range (iqr) and frequency with valid percentages) were reported to describe the cohort. principal component analysis (pca) of selected socio-demographic variables was completed to generate a composite score indicating the socioeconomic status (ses) of participating children. the variables included in the pca were study participants’ household characteristics, number of household members, number of rooms used for sleeping in the house, household source of drinking water, type of toilet used, educational level of the mother, educational level of the father, employment status of the mother, employment status of the father and monthly family income. the composite scores from pca were then recoded into three groups using the following cut-offs (e.g. < 25th percentile = low ses, 25th to < 75th percentile = middle ses and ≥ 75th percentile = high ses). inferential statistics were used to identify the potential risk factors of malnutrition among participating children. cross tabulation with the chi-square test or fisher’s exact test was carried out to identify the significant differences in proportions. parametric tests (e.g. t-test and anova) were used to compare the mean waz and haz of children according to their socio-demographic and clinical characteristics. a p-value of < 0.05 was considered as significant. unadjusted odds ratio (or) and adjusted odds ratio (aor) were calculated with 95% ci to measure the association and identify potential predictors of undernutrition among children with cp registered in the gcpr. missing data for any variable was indicated using footnotes, and valid percentages were reported throughout the results. all data management and analyses were completed using spss version 26 (ibm corporation, chicago, il). ethical considerations ethical clearance to conduct the study was obtained from the ethics board of the christian health association of ghana (reference no.: chag-irb07022021) and the national catholic health service, st. john of god hospital (reference no.: sjogh/afsr/19). the study was conducted according to the guidelines of the declaration of helsinki. results between october 2018 and april 2020, 455 children with cp were registered from the study sites (mean (sd) age at recruitment 5.9 (4.1) years [95% ci: 5.5–6.3], 42.1% (n = 191) female). the overall nutritional status two-thirds of the children registered in the gcpr had at least one form of undernutrition. among the participating children, 38.9% [95% ci: 34.0–43.8] were underweight (waz: ≥ −3sd to < −2sd) or severely underweight (waz: < −3sd), 51.2% [95% ci: 46.6–55.9] were stunted (haz: ≥ −3sd to < −2sd) or severely stunted (haz: < −3sd) and 23.8% [95% ci: 20.0–27.9] were thin (baz: ≥ −3sd to < −2sd) or severely thin (baz: < −3sd). furthermore, among children aged < 5 years, 32.4% [95% ci: 26.6–39.1] and 41.2% [95% ci: 34.6–48.5] were wasted (≥ −3sd to < −2sd) or severely wasted (< −3sd) according to the whz and muacz, respectively. the mean (sd) and median [iqr] of the z scores have been summarised in table 1. table 1: the overall nutritional status of children with cerebral palsy (n = 455). factors related to undernutrition socio-demographic factors age: undernutrition was significantly higher among children aged 10–14 years (84.9%) and 15–17 years (86.4%) when compared to younger children (p < 0.001). the waz and haz gradually deteriorated among children with an increase in their age. the mean (sd) of waz and haz among children aged 0–4 years versus 10–14 years was −1.3 (2.4) and −1.8 (3.0) versus −2.3 (1.5) and −3.5 (2.1) (p = 0.09 and p < 0.001, respectively). gender: the presence of at least one form of undernutrition was more common among male children (72.3%) than females (59.4%) (p = 0.004). maternal and paternal educational level: a significant overrepresentation of undernutrition was observed among children whose mothers and fathers never received any formal schooling or completed primary education than others in the cohort (p < 0.001 and p = 0.018, respectively). the mean (sd) of waz and haz was −1.0 (2.3) and −1.7 (2.9) for children whose mothers had completed secondary or higher education level, which decreased to −1.7 (2.1) and −2.9 (2.7) among children whose mothers had no formal schooling (p < 0.001 and p = 0.001, respectively). a similar relationship was observed between fathers’ educational level and child’s nutritional status. maternal and paternal occupation, family income and ses: the undernutrition rate was significantly higher among children whose mothers or fathers were unemployed at the time of the child’s birth (p = 0.014 and p = 0.002, respectively). children from low and middle-ses families had significantly higher rates of undernutrition compared with children from high-ses families (p = 0.002) (table 2 and table 1-a1). table 2: socio-demographic characteristics and nutritional status of participating children (n = 455). clinical factors predominant motor type and topography overall, the presence of at least one form of undernutrition was significantly higher among children with spastic cp (p = 0.035), especially, those who had quadriplegia. the mean (sd) of waz and haz was significantly lower among children with spastic quadriplegia compared to others in the cohort (p = 0.015 and p = 0.015, respectively) (table 3, table 2-a1). table 3: clinical characteristics and nutritional status of participating children (n = 455). gross motor function classification system level the presence of at least one form of undernutrition was lowest among children with gmfcs level ii (54.2%) and highest among children with gmfcs level v (78.1%) (p < 0.001). timing of the brain injury and diagnosis age of cerebral palsy no significant relationship was observed between the timing of the brain injury that probably caused cp, the age of cp diagnosis and the nutritional status of the children registered in the gcpr (p = 0.399 and p = 0.065, respectively). associated impairments we observed a significant overrepresentation of undernutrition among children who had at least one impairment (70.3% – 78.2%) than those without any impairment (49.6%) (p < 0.001). when investigating specific types of impairments, the presence of undernutrition was significantly higher among those who had hearing impairment (p = 0.005), speech impairment (p < 0.001), intellectual impairment (p < 0.001) and epilepsy (p = 0.001). both the waz and haz indicated similar findings (table 3, table 2-a1). predictors of undernutrition among children with cerebral palsy using adjusted analysis based on findings from the bivariate analysis, we included variables in the adjusted model (i.e. logistic regression) to identify potential predictors of undernutrition among children with cp. when adjusted for age, gender and ses, we found that maternal educational level, gmfcs level, presence of speech impairment and epilepsy were significant predictors of undernutrition among participating children in the gcpr. children whose mothers had completed only primary education had 2.6 times (95% ci: 1.3–5.4) higher odds of having undernutrition compared to those whose mothers had completed at least secondary education level. moreover, having a gmfcs level iv, the presence of speech impairment and epilepsy increased the odds of undernutrition among children by 2.2 (95% ci: 1.0–4.8), 2.0 (95% ci: 1.1–3.6) and 2.9 (95% ci: 1.1–7.5) times, respectively, among children when adjusted for other covariates (table 4). table 4: predictors of undernutrition among participating children (adjusted analysis). presence of multiple forms of undernutrition the overlaps of different forms of undernutrition among children with cp have been illustrated in figure 1. in our cohort, n = 29 children aged < 10.1 years had all three forms of undernutrition (i.e. underweight, stunted and thinness). when investigated further, we observed most of them had spastic cp (69.0%), tri or quadriplegia (60.0%), gmfcs level iii-v (71.4%), speech impairment (79.3%) and intellectual impairment (50.0%). figure 1: the presence of multiple forms of undernutrition among participating children. discussion the proportion of malnutrition among children with cp attending the healthcare facilities included in this study was alarmingly high. two out of three children recruited in our study had at least one form of undernutrition. when compared with the national average, the proportion of underweight, stunting and wasting among under-five children with cp was substantially higher than the general population of the same age (40.6% vs. 11%; 46.4% vs. 19% and 32.5% vs. 5.0%, respectively) (ghana statistical service [gss], ghana health service [ghs] 2015). furthermore, the presence of multiple forms of undernutrition was commonly observed in our cohort. while the data presented here were collected from tertiary health care facilities and are not representative of the whole population, the burden of malnutrition observed in this group is still high when compared to other institution-based studies in different lmics such as uganda, vietnam and argentina (kakooza-mwesige et al. 2015; karim et al. 2019; ruiz brunner et al. 2020). the findings from this research clearly indicate the vulnerability of these children registered in the gcrp towards poor growth, diminished immune system and health, severe motor function impairment and low survival probability in the long run (aggarwal et al. 2015; donkervoort et al. 2007; jahan et al. 2019a; namaganda et al. 2020). to date, there has been very little research describing the epidemiology of malnutrition among children with cp in ghana (da silva et al. 2022). ghana cp register has enabled us to explore the potential factors that could be addressed in interventions. furthermore, the data generated could be used to design nutrition-sensitive and nutrition-specific interventions with immediate and long-term management to improve the health, motor function, social participation and survival of children with cp in ghana. our findings therefore contribute important epidemiological data to the current knowledge and understanding of malnutrition and the development of cost-effective strategies for nutritional management of children with cp in ghana. we observed an increasing trend in undernutrition among older children in our cohort. these findings are consistent with several institution-based studies in lmics (almuneef et al. 2019; kakooza-mwesige et al. 2015; karim et al. 2019). in lmics such as ghana, children with cp often lack access to any early intervention and rehabilitation services (al imam et al. 2021), which also increases their risk for severe impairment of motor function as they grow older. this consequently increases their risk for associated feeding difficulties and digestive complications interfering with their dietary intake in general (benfer et al. 2017; polack et al. 2018). interestingly our data suggest a higher rate of undernutrition among male children with cp than females in the cohort. we also observed a positive relationship between maternal educational level, the ses of the families and the nutritional status of children registered in the gcpr. a similar pattern was reported in the latest demographic and health survey in ghana (gss 2023). the nationwide survey found a comparatively higher rate of underweight and stunting among children from low or middle ses than high ses. similarly, malnutrition was more common among children whose mothers did not receive any formal education or had completed primary education when compared to those who had received higher education in ghana (gss 2023). although we have not been able to establish the causal relationship here, it is evident that these children could have benefited from early initiation of a nutrition intervention (e.g. feeding skill improvement, modification of food composition and tube-feeding) and rehabilitation services. access to early intervention and rehabilitation services could improve the functional outcome (e.g. gross and fine motor function) of children with cp, which directly and indirectly affects their food consumption and nutritional status (herrera-anaya et al. 2016; karim et al. 2021). in a recent study, children with higher muscle tone were reported to have significantly lower levels of fat mass, fat-free mass and muscle mass compared to children with lower muscle tone (więch et al. 2020). through rehabilitation, the nutritional status of those children could be improved. although we did not find any direct association between the age of cp diagnosis, the timing of brain injury and the nutritional status of children registered in the gcpr, delayed diagnosis and low rehabilitation service uptake are commonly observed in lmics (al imam et al. 2021; jahan et al. 2021b). this also reduces the opportunity for early intervention to improve functional and health outcomes (including nutrition). when adjusted for other variables, the severity of motor impairment, presence of epilepsy and speech impairment significantly increased the odds of undernutrition among participating children. severe gross motor functional limitation has previously been reported to significantly increase the risk of malnutrition among children with cp in several other institution-based studies in tanzania, vietnam and argentina, and community-based studies in bangladesh, indonesia and ghana (almuneef et al. 2019; herrera-anaya et al. 2016; huysentruyt et al. 2020; jahan et al. 2019b, 2021a; kakooza-mwesige et al. 2015; karim et al. 2019; polack et al. 2018). as in several literature, children with severe functional motor limitations often present with severe feeding difficulties and oropharyngeal dysphagia, which directly affects their nutritional status (benfer et al. 2017; polack et al. 2018). furthermore, the high burden of undernutrition among children with speech impairment can indicate issues with oro-motor function and cognition among children with cp, which likely increases their vulnerability to dysphagia. evidently, those children with severe forms of cp could have benefitted from direct nutritional support for instance via enteral feeding (ferluga et al. 2014). however, such nutritional interventions require careful monitoring to prevent any adverse outcome such as infection, especially among non-ambulant children. furthermore, overfeeding is also a risk if not managed properly. our findings also suggest a higher proportion of overweight or obesity among children with gmfcs level iii-v compared to children with gmfcs level i-ii, although we did not collect information regarding feeding intervention, such as tube feeding, in this cohort. although we generated crucial evidence essential to understanding the epidemiology of malnutrition and nutritional management among children with cp, our study has several limitations. firstly, the gcpr utilises an institution-based survey methodology, which imposes bias in participant recruitment and hence not generalisable to larger groups or population-based data. however, the recruitment sites do provide tertiary healthcare services across the country, providing an important snapshot of the status of children accessing these services. secondly, we used cross-sectional data and could not add a control group, for example, children without cp to compare the different clinical characteristics (e.g. eating disorders) and establish a causal relationship between cp and undernutrition among children in ghana. thirdly, there was a large number of missing data for the ‘presence of intellectual impairment’ (as diagnosis could not be confirmed for n = 186 children). in addition, several other variables had a few missing data. nevertheless, as mentioned in the statistical analysis section, we reported valid percentages throughout the results sections and added footnotes to indicate missing in respective tables. fourthly, as part of the gcpr, we did not collect information about the dietary intake pattern of participating children and thus could not relate the nutritional status of those children with cp to their current food consumption. lastly, because of resource constraints (e.g. equipment, trained personnel), we could not include advanced tools to measure nutritional status (e.g. bioelectrical impedance and skin-fold thickness to measure the body composition) although those provide a more precise indication of the nutritional status of children with cp (hardy et al. 2018). conclusions in conclusion, the rate of malnutrition is alarmingly high among children with cp attending tertiary health care facilities in ghana. urgent action should be taken to ensure that those children are brought under existing and target-based cp-specific nutrition intervention programmes to prevent any adverse outcomes. evidence-based nutritional guidelines and intervention strategies or programmes could be adopted at the healthcare facilities to support families in taking care of their children with cp. our data could serve as a baseline to develop such guidelines and for future population-based epidemiological studies in ghana. also, the gcpr cohort could provide a framework to pilot nutritional intervention programmes and conduct translational research to identify potential intervention strategies that are feasible and cost-effective in lmic settings such as ghana. acknowledgements the authors would like to thank all children with cp and their caregivers who participated in this study for their valuable time and information. they would also like to thank miss paulina nyakotey, occupational therapist, at the salvation army rehabilitation centre, begoro, ghana for her assistance in assessment and data collection. they also thank the physiotherapy technician team in ghana including mr ransford boadi from holy family hospital, techiman, mr sylvester kombien yekinam from anglogold ashanti hospital, obuasi, mrs alice gyekyebea asamoah and mrs josephine asamoah from komfo anokye teaching hospital, kumasi and prosthetist and orthotist officer, mr michael agyei-twum, from st. john of god hospital, duayaw nkwanta, ghana for their extensive support in the assessment, registration of children with cp in the gcpr and data collection process. they also thank mr iskander hossain, data management officer, csf global for his assistance in data entry and management. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions the project was conceptualized, and the methodology was developed by g.k., m.m. and n.b. implementation in ghana, including conducting investigations and data collection, was carried out by f.l., s.k.a. and f.i.d. these team members, along with i.j. and g.k., were responsible for data curation. formal analysis was completed by i.j., r.s. and g.k. using standard statistical software. i.j., with supervision from g.k., prepared the first draft of the article. all authors contributed to the revision and finalisation of the article. g.k. supervised the overall work and secured funding with support from n.b. funding information the study received funding from the cerebral palsy alliance research foundation (project grant: pg10017). data availability the data presented in this study are available on reasonable request from the corresponding author, g.k. the data are not publicly available because of privacy and ethical restrictions. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references aggarwal, s., 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rosenbaum, p. et al., 2002, ‘relationship of nutritional status to health and societal participation in children with cerebral palsy’, journal of pediatrics 141(5), 637–643. https://doi.org/10.1067/mpd.2002.129888 stevenson, r.d., 1995, ‘use of segmental measures to estimate stature in children with cerebral palsy’, archives of pediatrics & adolescent medicine 149(6), 658–662. https://doi.org/10.1001/archpedi.1995.02170190068012 więch, p., ćwirlej-sozańska, a., wiśniowska-szurlej, a., kilian, j., lenart-domka, e., bejer, a. et al., 2020, ‘the relationship between body composition and muscle tone in children with cerebral palsy: a case-control study’, nutrient 12(3), 1–12. https://doi.org/10.3390/nu12030864 world health organization (who), 2008, training course on child growth assessment, geneva. viewed 26 june 2024, from https://www.who.int/publications/i/item/9789241595070 appendix table 1-a1: mean (sd) score of waz, haz and baz of children according to their socio-demographic characteristics (n = 455). table 2-a1: mean (sd) score of waz, haz and baz of children according to their clinical characteristics (n = 455). abstract background ethical consideration method findings discussion recommendations of the study limitations of the study further research acknowledgements references about the author(s) nomfundo f. moroe department of speech pathology and audiology, school of human and community development, university of the witwatersrand, south africa victor de andrade department of speech pathology and audiology, school of human and community development, university of the witwatersrand, south africa citation moroe, n.f. & de andrade, v., 2018, ‘hearing children of deaf parents: gender and birth order in the delegation of the interpreter role in culturally deaf families’, african journal of disability 7(0), a365. https://doi.org/10.4102/ajod.v7i0.365 original research hearing children of deaf parents: gender and birth order in the delegation of the interpreter role in culturally deaf families nomfundo f. moroe, victor de andrade received: 08 feb. 2017; accepted: 26 feb. 2018; published: 30 apr. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: culturally, hearing children born to deaf parents may have to mediate two different positions within the hearing and deaf cultures. however, there appears to be little written about the experiences of hearing children born to deaf parents in the south african context. objective: this study sought to investigate the roles of children of deaf adults (codas) as interpreters in deaf-parented families, more specifically, the influence of gender and birth order in language brokering. method: two male and eight female participants between the ages of 21 and 40 years were recruited through purposive and snowball sampling strategies. a qualitative design was employed and data were collected using a semi-structured, open-ended interview format. themes which emerged were analysed using thematic analysis. results: the findings indicated that there was no formal assignment of the interpreter role; however, female children tended to assume the role of interpreter more often than the male children. also, it appeared as though the older children shifted the responsibility for interpreting to younger siblings. the participants in this study indicated that they interpreted in situations where they felt they were not developmentally or emotionally ready, or in situations which they felt were better suited for older siblings or for siblings of another gender. conclusion: this study highlights a need for the formalisation of interpreting services for deaf people in south africa in the form of professional interpreters rather than the reliance on hearing children as interpreters in order to mediate between deaf and hearing cultures. background globally, it is suggested that 90% of people with audiological deafness who have children have hearing children (christodoulou et al. 2009). international studies conducted on hearing children of deaf parents show that these children are raised in families where there appears to be unique dynamics in relation to hearing children born to hearing parents. authors such as preston (1995) report that hearing children of deaf parents are raised in unique, extraordinary family settings as they may be exposed to and interact with two differing cultural, social and linguistic systems: one of their deaf parents and the deaf community and one of hearing peers and adults. what makes these family settings unique is the fact that cultures differ in a sense that the deaf community uses sign language as a mode of communication, whereas the hearing community uses spoken language to communicate. therefore, the lives of hearing children of deaf adults (codas) may inherently incorporate the ambiguity of being culturally ‘deaf’ and yet functionally hearing. as a result, these families, more specifically the codas, may then need to bridge the gap between the hearing and deaf worlds and, therefore, may face unique communication and cultural challenges (clark 2003). in general, there is very limited research on the experiences of codas in south africa. therefore, this study seeks to capture and highlight the experiences of hearing children born to deaf parents in south africa. more specifically, this study aims to describe the delegation of the language broker role in deaf-parented families and to understand the dynamics that gender and birth order may play in the delegation of this role. ‘deaf’ versus ‘deaf’ a distinction is made between audiological deafness (‘deaf’) and cultural deafness (‘deaf’). the term ‘deaf’ refers to an audiological status, while ‘deaf’ refers to a cultural identity (lane, hoffmeister & bahan 1996; lucas & valli 1990). the uppercase ‘d’ in ‘deaf’ culture signifies cultural membership in a community with a shared language and experience (murray, klinger & mckinnon 2007). on the other hand, the lowercase ‘d’ in ‘deafness’ is a term that refers to an audiological concept relating to hearing difficulties (murray et al. 2007) as a response to what deaf persons perceive as oppressive attitudes conveyed by hearing society, members of the deaf community have preferred to write ‘deaf’ with a capital d instead of a lowercase letter. ‘deaf’ signifies a person who places pride in themselves being identified as a ‘deaf person’, a person who aligns himself or herself with deaf culture and sign language, and is accepted by the deaf community as a deaf person. on the other hand, the use of the term ‘deaf’ refers to the audiological dimension of the physical loss of a person’s hearing. an individual who identifies himself or herself as ‘deaf’ is considered by the deaf community to be an ‘outsider’ as he or she does not share the same language or culture as the deaf persons (mcilroy 2008:42). it is therefore important to note that not all audiologically deaf people belong to deaf culture, and hence the distinction between ‘deaf’ and ‘deaf’ (siple 1994). according to filer and filer (2000), in order to begin understanding the experience of hearing children of deaf parents, it is necessary to have a basic understanding of deaf culture. the next section briefly discusses some tenets of deaf culture. deaf culture and the deaf community similar to any culture, language is an important part of deaf people’s identity (clark 2003). although not all deaf people use sign language, it is still considered the single most important element that connects and binds the deaf community together (filer & filer 2000). resultantly, in the united states of america, deaf people created a community known as deaf-world, which has its own language and culture; a community that is based on ‘shared experiences of a particular human experience, that of deafness’, despite the fact that they are viewed as a minority group (singleton & tittle 2000:222). however, even though it seems exclusionary to the people outside of the deaf community, there are often specific criteria for inclusion in the deaf community: singleton and tittle (2000) state that one is either born into the deaf community or ‘one opts’ in when one realizes that despite one’s efforts and those of one’s hearing family, one simply cannot identify with the hearing world. (p. 222) according to cokely (1980), as cited by napier (2002:142), there are four spheres of life through which people can be members of the deaf community: through their audiological status, political support of the goals of the deaf community, social contact within the community and through linguistic fluency in the sign language of the community. furthermore, singleton and tittle (2000) note that in as much as these are the core prerequisites for entry into the deaf community, there is diversity in the membership, as this community may also include a range of people regardless of the degree of their physiological and measurable deafness. hearing people who identify with deaf culture, such as hearing children of deaf parents, may also form part of the deaf community. because of such diversity within the community, in order for one to gain entry into the deaf community, ‘one must adopt a cultural view of deafness and be proficient in sign language’ (singleton and tittle 2000:222). according to selzer (2010), the south african deaf community is relatively small and tends to keep to itself and appears very guarded about its culture and language. furthermore, very little is known about south african deaf culture (selzer 2010). acceptance and acculturation into the deaf community seem to be affirmed by one’s attitude and the use of sign language and not upon one’s audiometric status (singleton & tittle 2000). in addition to satisfying the criteria for membership into the deaf community, one may still need to possess the right ‘attitude toward deaf people, their language, culture, and minority status to be accepted into the community’ (napier 2002:142). deafness as a disability the hearing community is reported to generally view deafness as a disability and has little understanding or information about deaf culture (filer & filer 2000). in addition, hoffmeister (1996) states that many of the professionals involved in educating deaf people have viewed deafness as pathological by focusing on the physiological deafness. this disability perspective ought not to be seen as the authors’ perspective of deafness but is presented to provide an in-depth understanding of the position of deaf people and the position of codas in relation to the two worlds which they often inhabit and through which they have to navigate, especially considering the developing context within which this study was conducted. within this disability perspective, ‘deafness is considered to be one of the single largest prevailing disabilities in south africa’, eliciting growing local, national and international concerns (storbeck 2010:502). deafsa, the deaf federation of south africa, estimates that about 10% of the south african population are disabled in some way and that approximately 3.5% have some degree of deafness. furthermore, people with disabilities in south africa generally lack access to or knowledge of basic health and social services (barratt 2007), which may be attributed to the history of ‘apartheid’ (baker 2011), where the deaf community was often excluded from participation in the wider hearing society. because of these limitations, the onus seems to fall on hearing children to act as the communication link and language brokers between their deaf parents and the hearing community. the disability view of deafness is in stark contrast to the view of the deaf community where members consider themselves ‘neither isolated nor disabled, but rather a cultural and linguistic minority, disadvantaged by a language barrier rather than by a disability’ (murray et al. 2007:172). preston (1995) argues that ‘deafness is a particular human condition understood by outsiders as a profoundly devastating disability, by insiders as an incidental feature and cultural norm’ (p. 1462). also, power and leigh (2003:40) further elucidate that deafness is primarily ‘a communication disability’. deaf people would not be regarded as disabled if they were given access to information and the means to communicate with the hearing community (napier 2002). children of deaf adults the term ‘coda’ refers to any hearing person born to one or two deaf parents (bishop & hicks 2005; bull 1998; mand et al. 2009). being a coda means that there is a cultural and linguistic difference between deaf children born to hearing parents and hearing children born to hearing parents (bull 1998). according to bishop and hicks (2005), the term ‘coda’ is reserved for people who see themselves ‘as not quite fitting into the deaf/hearing categories; people who want to carve out a third niche for themselves’ (p. 192). it should be noted that a hearing child born to one deaf parent and one hearing parent is still referred to as a coda. quigley and paul (1990) estimate that approximately 5% of codas are born to two deaf parents and 10% of codas are born to one deaf parent and one hearing parent. mallory, schein, and zingle (1992) state that 10% of deaf people marry hearing people, and if these hearing people are fluent in sign language, the family language is likely to be sign language. these different family dynamics imply that children in such families will be raised in a deaf environment, even if they are themselves hearing. moreover, lane et al. (1996) assert that it is not the degree of audiological deafness that decides whether an individual is deaf or not, but the degree of identification with the deaf community. the deciding factor is usually ‘attitudinal deafness’ (napier 2002). hearing codas come from all ethnic, religious and economic backgrounds. the only common characteristic is having deaf parents (filer & filer 2000). children of deaf adults may share and live unique life experiences. they experience deafness as a typical part of their family life from childhood, and not as a shock or a foreign concept that they encounter in adulthood (mand et al. 2009). hoffmeister (2008) asserts that hearing children of deaf parents are typically the successive generation in the deaf community where deaf people have hearing children when they marry. they represent a relatively invisible linguistic and cultural minority (ladd 2003). generally, they grow up as a part of the deaf community and learn sign language as their first language (bishop & hicks 2005). children of deaf adults grow up in deaf families, but not all codas grow up in a deaf community (hoffmeister 2008). in as much as codas may be acculturated to deaf ways within their families, their ability to hear creates uncertainty as to whether they are true inheritors of deaf culture (bishop & hicks 2005; preston 1994; singleton & tittle 2000). initially, codas may not see themselves as hearing within their deaf family and may only realise this when they are older (bull 1998; hoffmeister 1996). understanding the life experiences of codas entails understanding that codas have an ongoing connection with the deaf community, often sharing their views, and the experiences of suffering emotionally as a part of that community when deafness is defined by some as a disability to be prevented where possible (mand et al. 2009). language brokering in deaf families language brokering in deaf-parented families arises from the fact that many deaf adults may or may not have a reasonable ability to read and write spoken language and also may not be able to communicate adequately through spoken language (hall & guéry 2010). as a result, their children often act as language brokers between their deaf parents and the hearing community (hall & guéry 2010). language brokering in these families ranges from sporadic to regular, and codas are often forced to start language brokering from a very young age (preston 1996). according to hall and guéry (2010), codas start language brokering much earlier than the other children who may act as language brokers in families, for example, where parents may be immigrants. codas usually become language brokers because of the difficulties in interactions which may be owing to the fact that hearing family members often do not share the same language of communication as the deaf parents, making access to social interactions difficult (henderson & hendershott 1991). as a result, in the presence of extended family or the hearing society at large, interactions may be affected as deaf parents may not be able to communicate effectively, which will then necessitate that codas act as language brokers. preston (1994) states that the oldest daughter often serves as the interpreter, even if she has an older brother and further asserts that female participants who did not consider themselves fluent in sign language still took on the interpreting responsibility. as a result, women were also more likely to become professional sign language interpreters than men, and men more likely to have poorly developed sign language skills in relation to female siblings (preston 1996). some codas’ responsibility for handling family communication and the possible exposure to inappropriate context may create unwanted pressure and burdens which they are too young to resist or negotiate, and in most cases, the children may become emotionally involved in these interactions (preston 1994; singleton & tittle 2000). however, despite some benefits, this interpreter role may place undue pressure on the hearing children of deaf parents. it is suggested that hearing children of deaf parents who act as language brokers may find themselves in a situation known as ‘role reversal’, which is a situation where a child feels responsible for the parents and the parents expect the child to be responsible for them (buchino 1993). literature suggests that in some cases parents are aware of their reliance on their hearing children (mallory et al. 1992; torres 2003). consequently, some parents opt not to use sign language with their children in order to prevent the possible overreliance on their children who are serving as interpreters (jones, strom & daniels 1989). furthermore, morales and hanson (2005) assert that children who served as language brokers also attempted to protect their parents from negative comments or embarrassment while interpreting. in an attempt to protect their deaf parents, children who act as language brokers may not interpret insensitive remarks made by a hearing person about the deaf parent as the hearing person may assume that all the family members are deaf because they are using sign language to communicate. also, within a confrontation between deaf parents and hearing people, to avoid escalating the situation, codas may not interpret all of the parents’ angry statements or those of the hearing people (filer & filer 2000). it is clear that such situations present a challenge for codas, as they may find themselves caught between two worlds: one of the hearing community and one of the deaf community. notwithstanding these challenges, some authors have highlighted that there are advantages for performing the roles of language and cultural brokers, as hearing children of deaf parents gain valuable information about the adult world that might assist them in their own development. furthermore, they also have an opportunity to develop a close relationship with their parents (filer & filer 2000). in addition, preston (1994) asserts that hearing children of deaf parents felt that their family experiences developed and encouraged their ability to empathise with others. an added bonus is that codas ‘enjoy a command of the languages and the cultural knowledge of two worlds’ and they benefit from that experience (lane et al. 1996:171). singleton and tittle (2000) suggest that if the role of the parent is clear and the interpreting is kept to appropriate contexts, the added responsibility of interpreting can result in maturity, independence and an opportunity to have rich experiences. these authors claim that children who learn to navigate and explore the hearing world independently ‘develop positive attributes such as adaptiveness, resourcefulness, curiosity and “worldliness”’ (p. 228). not much is known about hearing children of deaf parents in south africa. a review of the existing literature into the patterns of language brokering in deaf parents in a south african context yielded few results. for instance, locally, the sowetan newspaper (16 october 2012) published an article about a 3-year-old girl, sfundo, who is the communication link within her family as well as between her family and the outside world. the article illustrates how children take up the essential role of interpreting at a very young age and shows how a 3-year-old girl acts as indispensable ‘ears’ for her deaf parents. but when the parents are not at home, communication becomes harder and they have to rely on written notes to communicate. this article echoes the observations made by authors like preston (1994) who notes that hearing children of deaf parents start interpreting very early in life, shouldering responsibilities beyond their age. this 3-year-old girl is already interpreting for her family at a very young age. this is often the reality that many deaf-parented families face. as mentioned earlier, there is a dearth of knowledge regarding the experiences of codas in south africa, which solicits the following questions: do we know enough about codas? are codas not significant enough to demand the attention of professionals and researchers? the available data on the codas’ experiences from the united states and other contexts may not be applied easily into the south african context because of both linguistic and cultural diversity. most studies on codas refer to codas as being bicultural and bilingual. this may not be the case in south africa as some codas may view themselves as being both multicultural and multilingual. the above factors necessitated a study of this nature with the aim to explore the experiences of codas within the specific context of gauteng in south africa in order to contribute to the gap in local knowledge. more specifically, this study intends to provide these adult children an opportunity to share and voice their experiences of being language brokers in their families. authors internationally have shed some insights into the experiences of hearing children growing up in deaf families; however, their insight may not be readily applied to the south african population, and hence the need for this current study. objective to explore the influence of codas’ gender and birth order on language brokering in the culturally deaf family. ethical consideration before commencing the study, approval was obtained from the university of the witwatersrand’s human research ethics committee (non-medical) (protocol number: h110922). furthermore, ethical aspects such as confidentiality and rights to withdraw from the study were considered. anonymity, however, was not guaranteed as snowball sampling was utilised in this study. method research design the goal for this study was to gain an insight into the coda phenomenon in a south african context as experienced by codas, especially in relation to the influence of gender and birth order on language brokering in the family. therefore, this study adopted a qualitative research design to describe the lived experiences of a sample of codas. a qualitative research allows for a ‘naturalistic approach that seeks to understand phenomena in context-specific settings, such as real world setting, where the researcher does not attempt to manipulate the phenomenon of interest’ (patton 2005:39). more specifically, an interpretive phenomenological design was adopted to accurately capture the participants’ experiences and give them a voice to express these experiences (larkin, watts & clifton 2006). this approach allowed for in-depth descriptions and understanding of the participants’ lived experiences as told from their perspectives (babbie 2011). therefore, the participants’ own words were used to express their experiences. the experiences generated rich, detailed and valid process information that contributed to an in-depth understanding of their context. procedure consent forms were formulated for the codas to participate in the study and for the interviews to be recorded digitally. the consent forms were written in english, highlighting the aims and the nature of the study. also the participants were informed that participation was voluntary and that refusal to participate in or the decision to withdraw from the study carried no negative consequences. it was highlighted that anonymity was not guaranteed as this study relied on snowball sampling to obtain participants for the study. participants were made aware that all information provided to the researcher would be kept confidential. for inclusion in the study, participants had to meet the following criteria: must be codas between the ages of 18 and 40 years, would have been raised by their biological parent(s) as there may be different dynamics if the participants were raised by their extended family members and should be residents of gauteng province, an urban and, arguably, resourced province of south africa. sample size and sampling strategy a sample size of 10 hearing adult children of deaf parents was obtained and interviewed for the study. the researcher predefined adult children of deaf parents as a focus of this study. therefore, the sampling strategy that was employed in this study was purposive sampling because it is a type of non-probability sampling which allowed the researcher to collect a sample from a population that met the inclusion criteria and was accessible to the researcher (burns & grove 2009). in conjunction with purposive sampling, the researcher also used snowball sampling to identify some of the participants for the study. a snowball technique was necessary as this research sought to study a hidden population, for whom satisfactory lists and sampling frames are not readily available (sadler et al. 2010). snowball sampling method is defined as a sample design in which participants approach other people who meet the inclusion criteria defined by the researcher and request them to participate in the study. the technique enabled participants to put the researcher in touch with other possible participants (sadler et al. 2010). snowball sampling takes advantage of the social networks of identified participants to provide the researcher with an ever-expanding set of potential participants, allowing a series of referrals to be made within a circle of acquaintances (robinson 2014). it is particularly effective in locating members of special populations where the focus of the study is on a sensitive issue (sadler et al. 2010). as an audiologist working in the field, the principal researcher was familiar with codas. the codas known to the researcher were asked to act as gatekeepers and to approach other codas who could be interested in participating in the study and request them to participate. potential participants were then put in contact with the researcher. in the event that codas were willing to participate, the gatekeepers were requested to grant permission for their codas’ contact details to be given to the researcher. this technique was an effective way to recruit participants for the study. from this sampling procedure, 10 codas agreed to participate in the study and their details are summarised in table 1. table 1: demographic profile of participants. semi-structured interviews questions for the semi-structured interviews were formulated by the researcher based on the available literature on codas in other countries. furthermore, as per kerlinger and lee’s (2000) recommendation, similar questions were grouped together in order for cohesion and order. the interviews were conducted in a conversational manner, and the questions were not asked in any specific order; however, the first question was always used as the opening question. the other questions were asked in relation to the participant’s closing line. use of english language participants in this study were requested to indicate their language of preference for the interviews from the 12 south african languages, including south african sign language (sasl). all the participants preferred the use of english and as a result all the interviews were conducted primarily in english. nevertheless, code switching was observed particularly in certain words and phrases. code switching refers to a situation ‘wherein a person alternates between two languages within the same communicative event’ (shulman & capone 2010:361). this is often observed in individuals who are bilingual and in places where both languages are common in the environment (owens 2012). some participants occasionally used phrases from their home languages such as zulu or sotho to accurately capture or articulate their experiences. the interviewer is fluent in the participants’ home languages and so was able to maintain the conversation when such language switching occurred. overall the questions focused on five areas which were predefined by the researcher as being relevant to the study. the questions were based on the review of literature consulted for this study; the questions focused on the childhood experiences, interpreting experiences, occupational choices, support services and disability. more importantly, these questions were designed to answer or address the aims of the study and to answer the research questions posed. where necessary, the participants were asked to elaborate and clarify. generally, the questions were unambiguous and participants did not experience difficulties in answering the questions related to the gender and birth order as the portion of the study focused on that objective. data analysis the participants’ transcripts served as the raw data for this study and inductive thematic analysis was used as it allowed for the coding of data without trying to fit them into a pre-existing coding frame, or the researchers’ analytic preconceptions, and thereby allowing for themes to emerge from the data themselves (braun & clarke 2006). the themes were then analysed using the steps recommended by creswell (2012). representative verbatim quotations were used in the write-up of the study to support the findings. trustworthiness in order to deal with any bias or subjectivity in the handling and analysis of data, both as audiologists and non-codas, the authors had to acknowledge that ‘all research is subject to researcher bias’ (morrow 2005:254). therefore, reflexivity and bracketing were applied to guard against any bias from the authors. to achieve bracketing, a peer reviewer served as a mirror and assisted in reflecting on her responses to the interviews. also, the authors made use of the ‘community of practice’ (rossman & rallis 2003:69) to share the process and the findings of the study with a group of colleagues in the department who are experienced researchers and are familiar with the current issues involving professionals working in the field of deafness. after transcribing the interviews, the researcher realised the need to conduct member or participant checks through a focus group to ‘learn from the interviewee how well the researcher’s interpretations reflect the interviewee’s meaning’ (morrow 2005:254). furthermore, after transcribing the interviews, the researcher contacted some participants for more clarification where the researcher had misunderstood or sought extra information and such information was given. pilot study in order to ensure that the findings of this study yielded appropriate results, a pilot study was undertaken. the pilot study was conducted with one participant who was first to respond to the researcher’s request for participants for this study. the participant was a 22-year-old female who met the inclusion criteria of the current study. the interview was conducted in the researcher’s office as per the participant’s request. the interview was conducted in english and lasted for 45 min. the interview was audio recorded. the pilot study yielded no major changes to the interview guide; consequently, the data collected from the pilot study were included in the main study. generally, there is a common concern with the inclusion of the pilot study participants in the main study as those participants may already be exposed to an intervention and therefore may respond differently from other participants who were not included in the pilot sample. however, in some cases, ‘it may be impossible to exclude pilot-study participants because of small sample size’ (kim 2011). this was the case with the current study as the sample size of the participants was very limited and it became necessary to include the data gathered during the pilot study. also, the current study did not involve any intervention procedures or subsequent interviews. kim (2011) further states that contamination is less of a concern in qualitative research as researchers often use some or all of their pilot data as part of the main study. findings the analysis of the interviews suggested that there were no formal rules when it came to assigning the role of interpreter in the family because codas reported that they had had to interpret for their parents at some point in time, regardless of the codas’ birth order or gender. for example, participant 1 explained that, in her family, no one was formally asked to be the interpreter, ‘no one was given the role to interpret at home. we all interpret. whoever is there interprets. no one was chosen to do it’. furthermore, participants expressed that they would assume the role of interpreter out of necessity, without realising that this is what they are doing. participant 7 made this point salient when she said: ‘you become an interpreter from the age of whatever without you realizing, because nobody understands your mother or your father and then now you have to go to hospitals with them, to clinics with them blah blah blah and they be like, “what is your father saying? what is he saying?”’ birth order it appears as though the older children shifted the responsibility of interpreting to the younger siblings as exemplified by participant 8, who said, ‘well normally, it was the eldest in the house who would interpret, then as they moved out the next one would be the interpreter’. in this instance, it appears as though the shift in responsibility occurred when the older children moved out of the house and therefore passing the responsibility to the younger children. however, other participants indicated that the older children passed that responsibility on to younger ones, regardless of whether the older siblings were living in the house or not. this may be seen as normal progression where, when the older sibling leaves, the remaining ones take over the interpreter role. however, in this study, the results indicate that even when the older siblings were still at home, they still delegated this role to their younger siblings. in this study, five participants were last-born children in their families and they all served as interpreters for their parents. these five participants mentioned that their older female siblings, who are first-born children, did not want to interpret and they believe that this was mainly because of personality differences. participant 4 shared that her older sister, who is the first-born child in her family, preferred not to interpret for her family, as she explained: ‘my older sister was an introvert and she did not like interpreting as such. eventually i did the most of the interpreting’. similarly, participant 7 also reported that her first-born sister did not interpret for her family, even though she thought that it would have been a role better suited to the older child: ‘i’m the last born at home and i have no idea how i ended up being an interpreter at home. but for some reason, with the codas i know, it’s usually the babies that tend to sign, or the second born or the third born or something. not the first born. one would assume that the first born will take the responsibility. not all codas. like i said, the codas that i know, ja. but not all of them. it’s just like one or two codas that i know that are elderly at home would sign.’ this statement reinforces the notion that only a few of the older sibling codas are interpreters when they are living at home. the results also revealed that younger children were expected to interpret on topics that were not age appropriate; however, because of older siblings delegating the interpreter role to younger ones, these younger children had to engage in difficult conversations. for example, participant 8, the youngest child in the family, said: ‘the phone rang one time and it was my aunt saying that my grandfather has passed away. and you have to tell that to your parents. it’s awful. it’s awful telling your mom, ‘hey your dad just died’. she just started crying and i didn’t know what to do. i just turned around and walked away. you know, what do you do?’ participant 4, who has an older sibling, felt that she was expected to do things her older sibling may have been better suited to doing: ‘we were exposed to grown-up business at a young age because we are the mode of communication and having that responsibility already from a young age. answering the door. answering the phone. speaking to people, querying things, communicating for your parents towards someone else. you immediately assume responsibility. you need to focus and try and explain what they are trying to say and not be a child, if you don’t understand, you just can’t go on with your life. you know you have this responsibility; otherwise, miscommunication can affect you and so on.’ these findings highlight that interpreting goes beyond passing on information. the interpreter role necessitated that children guarded against miscommunications, as this will have a bearing on how the parents understand what was communicated to them. gender although the participants had said that there was no formal assignment of the interpreter role, they reported that female children tended to assume the role of interpreter more than the male children in their families. some of the participants speculated that this might have been because of being shy of having deaf parents or attracting attention to oneself when assuming the signing role, especially in public. one male participant in this study indicated that he is not fluent in sasl as he rarely signed for his parents. three participants mentioned that they have male siblings but these male siblings did not want to interpret for their deaf parents, so the female siblings took on that role. participant 6 reported that her brother did not interpret for the family and, more specifically, it seemed to her that he was embarrassed about having deaf parents: ‘my brother was never interested. my brother would run away very far, he’s not into it. he could sign very little, very limited. i wouldn’t classify my brother as a shy person but you know, we would walk in the street and he would tell my mother not to sign. he was shy of that aspect. i think he was shy of having deaf parents. so he just never did it and it was never … it just became the females’ job.’ participant 5, a male participant, reinforced this point when he said that he was constantly aware of the attention he was drawing from the hearing community and the embarrassment which accompanied it: ‘it’s almost like being ashamed of having deaf parents in a hearing place. they, you know the way they speak sometimes. their voicing is not a normal way of speaking. the noises (of disapproval from people around them) that you hear. need to check for tension (in that situation). so it depends on the situation. that can also make you feel self-aware; ‘oh people are looking at us’. that can also have an effect.’ female participants expressed the view that their male siblings would relegate the role of interpreter to them and that this role was not necessarily their choice, but was a role they assumed out of a sense of duty. for instance, participant 8 described how she and her siblings fought over who was going to interpret for their family because no one in her family wanted to interpret for the parents: ‘i don’t know. i remember that we used to fight about who is going to interpret. like you didn’t want to. it wasn’t really something that you wanted to do. it was like ‘not again’ but you had to do it.’ furthermore, female participants felt that because the interpreting role is often assumed by the female codas, they found themselves having to discuss topics which they, as females, found difficult to interpret with their fathers. participant 9 described a situation where she had to interpret about rape when she said: ‘i remember, when i was 10, i had to interpret ‘rape’, and i didn’t even know what rape was and because the news reader was also not explicit, i just spelled it and my father explained what rape was and for me it was such a shock.’ in other cases, female interpreter roles may have been better matched, as daughters, and as females, to interpret for their mothers, even if the topics were still difficult to discuss. participant 9 shared an event where she had to explain to her mom about hysterectomy, even though she found it difficult: ‘i have pictures (mental images) of my mother having a hysterectomy and i had to interpret when the doctor came in afterwards’. in this study, interpreting was voiced as one of the most sensitive and complex tasks for codas. all the codas in this study stated that they have at some point interpreted for their parents, even if they had not wanted to or not chosen to do so. in most cases, the codas’ reluctance to sign for their parents may have been because of the sensitive nature of the content and the situations they found themselves in. therefore, it seems as though gender and birth order considerations play out in codas communication experience. the discussion below provides some insights into these findings. discussion the objective of this study was to explore the influence of codas’ gender and birth order on language brokering in the culturally deaf family. from this study, it was apparent that all the participants interpreted for their deaf parents, even those who may have not wanted to do so because of the nature of the content, being shy and embarrassed of having deaf parents or not wanting to draw attention from the hearing community. more specifically, in this study, the role of a language broker was delegated to the youngest child, which is different from previous studies in the field where, for example, buchino (1993) and preston (1994) found that the oldest child interpreted for the parents. the difference in results of these studies conducted in the 1990s and the current study show that, although the research interest in codas may have waned, it still remains vital to conduct ongoing research in the area because it is apparent that there are changes in the pattern of coda interpreting roles across time and in different contexts. however, the findings of this study indicate that younger siblings may be assigned the role of taking care of the communication needs of the parents when the older siblings move out of home. this shift in responsibility may explain the difference between the studies conducted in the usa (buchino 1993; preston 1994) and this study conducted in south africa. this accentuates the need for ongoing and context-based research. this study revealed that female codas are more likely to interpret for their families and male children are less likely to do so, which appears to correlate with other studies (buriel et al. 1998; love 2003; mallory et al. 1992; preston 1994). also according buriel et al. (1998) and love (2003), female children are more likely to act as interpreters than male children. preston (1996) rationalises that females often assume the interpreter role as interpreting entails behaviours and skills often culturally ascribed to women such as helping, connecting, mediating, bridging and caretaking. the female participants in this study indicated that they embraced this role out of necessity as they did not have access to interpreting services. moreover, the participants in this study indicated that they have to interpret in some situations where they feel they are not developmentally or emotionally ready or in situations which they feel are better suited for older siblings or for siblings of another gender. furthermore, over and above interpreting, the codas in this study highlighted the importance of maintaining and facilitating communication so that there is no communication breakdown between the parties involved. therefore, they had to facilitate communication and not simply interpret or convey what was being said. dement and buriel (1999) and tse (1995) stated that the role of interpreters is to facilitate communication between two linguistically and/or culturally different communities, and not only conveying information, which the codas in this study seemed to have done. this added responsibility may place codas under pressure to ensure that communication is successful, even in situations that they feel are not ideal. recommendations of the study cognisant of the contextual constraints and resource limitations in south africa for people who are deaf, the recommendations may seem lofty and aspirational but are necessary in terms of planning and resource allocation. this study highlights the pressure placed on codas to interpret for their deaf parents, thereby highlighting the need for official and non-family member interpreters for deaf families. the availability of interpreters will alleviate the pressure placed on codas, who currently find themselves interpreting in situations that are not ideal emotionally, developmentally and psychosocially. in order to facilitate the availability of professional interpreters for deaf people, there is the need for formalisation of interpreting services for deaf people in south africa rather than the reliance on codas to interpret. however, as mentioned earlier, this aspiration is idealistic within the resource-constrained context of south africa and points to the need of exploring greater budget allocations for interpreting services, not as a nice-to-have but as an essential component of service provision and human rights. for example, the allocations made for interpreters of spoken languages such as afrikaans, isizulu, isixhosa and the other official languages need to account for the needs of people whose first language is sasl. these alternatives could offer support for codas while, admittedly, not resolving their challenges because it creates a space for freedom from the imposition upon them, especially for young females. the recommendation by the pan south african language board (pansalb) that sasl should be recognised as an official language may go a long way towards legitimising and formalising language services for people who are deaf, which, in turn, may have a positive spin-off on codas by alleviating them of their added, and often onerous, responsibility. therefore, this recommendation by pansalb is encouraged as this endorsement and recognition by government would have to provide for the training of interpreters and would also have to create opportunities for families from lower socio-economic backgrounds to access interpreter services. this right to interpreting services would then be entrenched in the people’s constitutional rights. moreover, in terms of family dynamics, it is recommended that strategies should be made available by professionals who interact with codas to provide strategic support. one such strategic support mechanism could be the use of the family systems perspective (fsp) as discussed by jackson and turnbull (2004). the fsp addresses the impact of deafness on the quality of life in the family. it identifies four crucial aspects of any family: family interactions, family resources, parenting and support for the child. also, the fsp ‘acknowledges the mutual impact of each member’s strengths and needs and recognises the importance of addressing issues related to family life’ (jackson & turnbull 2004:15): because the deaf person is a component of the family system, the deafness belongs not just to the affected individual but to the entire family. accepting this perspective makes it necessary for the family to seek ways to recognize itself so that all the components in the family system can participate, contribute, and draw on the family’s resources equally. (henderson & hendershott 1991:325) poston et al. (2003) state that implementing the model of family quality of life assists in embracing the overall degree to which the needs of each family member are met, the degree to which they enjoy family interactions and the degree to which they are able to participate in activities that are important to them as a family. families and service providers such as audiologists, psychologists, doctors and policymakers may need to evaluate working ‘hand-in hand’ to manage any barriers families may encounter. service providers may assist in arranging interpreting services, obtaining close captioning and securing funding for interpreting services at community events and activities (jackson & turnbull 2004). limitations of the study this current study sampled participants from gauteng, a more urban and economically active province in south africa; therefore, the participants’ experiences cannot be seen to be representative of all hearing children born to deaf parents across south africa, as the experiences of hearing children residing in other provinces may differ from the experiences of codas interviewed in this study. also in this study, the participants were asked to recount past events and childhood experiences and there is a possibility that recounting the experiences of growing up in deaf-parented families may result in restructured or altered memories where participants may not accurately recall the events as they occurred. however, some researchers have employed similar methods to collect data for their studies (christodoulou et al. 2009; preston 1994; 1996). a possible limitation may be the use of references which are not very recent. however, these references point to the hiatus in the research on codas and for updated research in the area as it is an area of importance. further research as not much is known about codas in south africa and the current study explored the experiences of a cohort of codas in gauteng only, it may be beneficial to conduct a similar study in other provinces of south africa. also, a larger sample of codas may add more richness and more information on the experiences of codas in all the provinces across south africa. notwithstanding that the first author and interviewer is herself black and female and her attempts to recruit participants from a range of different cultures and races, the majority of the participants in this study were white and females. conducting a similar study focusing on the experiences of black codas in south africa to capture the possible similarities and differences between the white and the black codas may add to understanding the interpreter role within a culturally diverse south africa. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions n.f.m. was responsible for the conceptualisation of the study, data collection and writing up of the 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persons with mobility impairments in cofimvaba, south africa babalwa tshaka, surona visagie, lieketseng y. ned african journal of disability | vol 12 | a1112 | 27 january 2023 original research obuntu bulamu: parental peer-to-peer support for inclusion of children with disabilities in central uganda ruth nalugya, harriet nambejja, claire nimusiima, elizabeth s. kawesa, geert van hove, janet seeley, femke bannink mbazzi african journal of disability | vol 12 | a948 | 30 january 2023 original research participation patterns of children with cerebral palsy: a caregiver’s perspective lethabo e. africa, anri human, muziwakhe d. tshabalala african journal of disability | vol 12 | a1058 | 31 january 2023 original research how did south africans with disabilities experience covid-19? results of an online survey mary wickenden, tim g.b. hart, stephen j. thompson, yul d. davids, mercy ngungu african journal of disability | vol 12 | a1119 | 09 february 2023 original research transfemoral amputation and prosthesis provision in tanzania: patient and provider perspectives mayur urva, claire a. donnelley, sravya t. challa, billy t. haonga, saam morshed, david w. shearer, nooshin razani african journal of disability | vol 12 | a1084 | 14 february 2023 original research family quality of life and children with disability in ethiopia: the role of support providers julia jansen-van vuuren, solomon dawud, rosemary lysaght, beata batorowicz, heather m. aldersey african journal of disability | vol 12 | a1124 | 16 february 2023 original research ‘people don’t understand what we go through!’: caregiver views on south africa’s care dependency grant zara trafford african journal of disability | vol 12 | a1114 | 20 february 2023 original research experiences of acquired brain injury one-month post-discharge from acute hospitalisation kirsten j. talbot, esedra krüger, bhavani s. pillay african journal of disability | vol 12 | a1037 | 28 february 2023 original research a stroke rehabilitation training program for community-based primary health care, south africa elsje scheffler, robert mash african journal of disability | vol 12 | a1135 | 06 march 2023 85 93 104 115 127 134 147 159 171 page i of iii table of contents i opinion paper a call to give a voice to people with intellectual disabilities in africa through inclusive research callista k. kahonde african journal of disability | vol 12 | a1127 | 25 april 2023 community paper parenting a child with disability: a mother’s reflection on the significance of social support marubini c. sadiki african journal of disability | vol 12 | a1157 | 19 may 2023 review article identity construction among deaf adolescents and young adults: a literature review lieketseng v. sekoto, vera-genevey hlayisi african journal of disability | vol 12 | a1168 | 02 may 2023 review article respite care models and practices for persons with intellectual disability: a scoping review toni abrahams, sharon kleintjes african journal of disability | vol 12 | a1115 | 25 july 2023 review article disability inclusion in african health systems’ responses during covid-19: a scoping review madri engelbrecht, yandisa ngqangashe, luphiwo mduzana, kate sherry, lieketseng ned african journal of disability | vol 12 | a1284 | 21 december 2023 original research social participation of individuals with spinal injury using wheelchairs in rural tanzania after peer training and entrepreneurial skills training annabelle de serreslafontaine, delphine labbé, charles s. batcho, lucy norris, krista l. best african journal of disability | vol 12 | a975 | 12 january 2023 original research restricted participation: drivers, experiences and implications of disability stigma in ethiopia esther breffka, caroline jagoe, susan p. murphy, belestie b. tsegaw african journal of disability | vol 12 | a1085 | 23 january 2023 original research self-devised assistive techniques by university students with learning disabilities ndakaitei manase african journal of disability | vol 12 | a1106 | 27 january 2023 original research third party disability of family members of adults with dysphagia kim coutts, bibi sayed african journal of disability | vol 12 | a1040 | 27 january 2023 1 6 9 16 28 40 52 65 75 vol 12 (2023) issn: 2223-9170 (print) | issn: 2226-7220 (online)african journal of disability http://www.ajod.org open access table of contents ii original research effects of institutional policies on employees with nonobvious disabilities anthony g. stacey african journal of disability | vol 12 | a1103 | 17 march 2023 original research overcoming barriers for people with disabilities participating in incomegenerating activities: a proposed development framework nokuthula tinta, unathi kolanisi african journal of disability | vol 12 | a1133 | 20 march 2023 original research ‘yebo, it was a great relief’: how mothers experience their children’s autism diagnoses mbalenhle n. manono, mary g. clasquin-johnson african journal of disability | vol 12 | a1101 | 28 march 2023 original research perceptions of health professionals on structure and process of stroke rehabilitation in ghana tawagidu mohammed, gifty g. nyante, joyce d. mothabeng african journal of disability | vol 12 | a1116 | 03 april 2023 original research growing resilience capacity for learners presenting with specific learning disability in learners with special education needs schools daphney mawila african journal of disability | vol 12 | a1045 | 18 april 2023 original research out-of-home life spaces valued by urban older adults with limited income hester m. van biljon, lana van niekerk, nicola a. plastow, lizette swanepoel african journal of disability | vol 12 | a1177 | 16 may 2023 original research inclusion of learners with learning disabilities in the vaal triangle mainstream classrooms nilford hove, nareadi t. phasha african journal of disability | vol 12 | a1163 | 12 june 2023 original research human capabilities of south african parents who have children with developmental disabilities lumka magidigidi, nicolette v. roman, inge k. sonn african journal of disability | vol 12 | a1155 | 19 june 2023 original research personal barriers to participation in chosen instrumental activities of daily living among community-dwelling persons with schizophrenia in rwanda pierre d. turikumana, lizahn g. cloete, jerome p. fredericks african journal of disability | vol 12 | a1063 | 28 june 2023 original research barriers to the employability of people with disabilities in the south african public service warren p. charles, liiza gie, rhodrick n. musakuro african journal of disability | vol 12 | a1178 | 17 july 2023 185 196 206 216 227 235 245 254 264 274 original research exploring employees’ coping with disability management practices at a south african university aletta m. moll african journal of disability | vol 12 | a1123 | 25 july 2023 original research a study of inclusive education provision in zambia: curriculum reform mbulaheni o. maguvhe, allan mutambo african journal of disability | vol 12 | a1067 | 31 july 2023 original research availability and use of assistive technologies at selected south african public libraries takalani m.m. mamafha, patrick ngulube, luyanda dube, sindile a. ngubane african journal of disability | vol 12 | a1141 | 31 august 2023 original research evaluation of a stroke rehabilitation training programme for communitybased primary healthcare elsje scheffler, robert mash african journal of disability | vol 12 | a1137 | 08 september 2023 original research developing a psychoeducational programme for caregivers of people with intellectual disability bonita k. gordon, nontembeko j. bila african journal of disability | vol 12 | a1195 | 22 september 2023 original research functioning among persons with lower limb amputation with or without prostheses in rwanda robert ngarambe, jean baptiste sagahutu, assuman nuhu, david k. tumusiime african journal of disability | vol 12 | a1193 | 17 october 2023 original research feeding children with autism in south africa: the teachers’ perspectives skye n. adams, nthabiseng matsimela african journal of disability | vol 12 | a1252 | 02 november 2023 original research a (mis)guidance of disabled youth: post-secondary schooling transition experiences in south africa armand bam, samantha kriger, zelda cottle african journal of disability | vol 12 | a1293 | 14 november 2023 original research south african single mothers’ experiences of raising a child with a disability siya mbanjwa, clare harvey african journal of disability | vol 12 | a1321 | 17 november 2023 original research disability inclusion in malaria services in western tanzania: a rapid barrier analysis elias c. nyanza, anthony kapesa, theresia maduka, monica t. madullu african journal of disability | vol 12 | a1270 | 28 november 2023 287 298 308 318 331 343 351 361 372 382 page ii of iii http://www.ajod.org open access table of contents iii original research leisure education to leadership: youth with physical disabilities’ experiences in south africa makhaya j. malema, marie e.m. young, lisa wegner african journal of disability | vol 12 | a1234 | 30 november 2023 original research supporting a tsonga learner living with bardet-biedl syndrome, a rare complex disability mfungana m. shikwambana, jean v. fourie african journal of disability | vol 12 | a1181 | 04 december 2023 original research factors affecting occupational therapy services for patients with traumatic brain injury melanie c.j.s. leyder, fiona breytenbach african journal of disability | vol 12 | a1203 | 06 december 2023 original research journeying with developmental coordination disorder: the family experience nicola l. o’kelly, jean v. fourie african journal of disability | vol 12 | a1210 | 19 december 2023 395 407 416 429 original research universal design of instruction to enhance learning for university students with visual disabilities jayshree singh, sachin suknunan african journal of disability | vol 12 | a1156 | 20 december 2023 original research affordability of an ngo-government partnership for community-based disability rehabilitation kelsey r. vaughan, ram k. thapa african journal of disability | vol 12 | a1283 | 22 december 2023 correction corrigendum: evaluating the awareness and knowledge of dyslexia among primary school teachers in tshwane district, south africa mary m. makgato, monicca leseyane-kgari, madoda cekiso, itani p. mandende, rose masha african journal of disability | vol 12 | a1079 | 09 may 2023 reviewer acknowledgement acknowledgement to reviewers editorial office african journal of disability | vol 12 | a1346 | 20 october 2023 439 450 458 459 page iii of iii introduction the beginning of my journey: seeking answers and finding none feeling helpless in the hands of healthcare professionals: power imbalances conclusions acknowledgements references about the author(s) marubini c. sadiki department of research administration and development, university of limpopo, polokwane, south africa citation sadiki, m.c., 2022, ‘parenting a child with disability in rural south africa: navigating the healthcare system’, african journal of disability 11(0), a942. https://doi.org/10.4102/ajod.v11i0.942 opinion paper parenting a child with disability in rural south africa: navigating the healthcare system marubini c. sadiki received: 07 sept. 2021; accepted: 11 may 2022; published: 25 oct. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction the united nations convention on the rights of persons with disabilities (uncrpd) recognises the family as the most ‘natural and fundamental’ unit and: that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities. (preamble:x [uncrpd], un 2006:3) disability stakeholders at different levels of society need to recognise the central role of the family in supporting a family member with disability. for children with disabilities, the parents or primary family caregivers usually assume the responsibility of caring for the child and providing all the necessary support (mckenzie & mcconkey 2016). evidence from research across the globe shows that the parents do not usually receive enough support, especially from healthcare services (which happen to be the first port of call when parents are seeking a diagnosis), therapeutic services and other necessary interventions (kyeremateng et al. 2019). in this article, i narrate my first-hand experience of caring for a child with cerebral palsy and navigating the healthcare system as a rural black african single mother from a poor background. i feel compelled to share this story from the vantage point of someone who has progressed from being a rural young mother to being a disability advocate, activist and emerging academic who is more aware of the exclusionary practices experienced by people with disabilities and their families. by sharing my story, i hope that the challenges faced by parents of children with disabilities in accessing health care services, particularly in a rural context, may be understood better by health service providers, policy makers and other relevant disability stakeholders. i acknowledge that my experience of parenting a child with disabilities is not a representation of all mothers of children with disabilities in south africa or in rural areas, because experiences of parenting a child with disabilities may vary depending on the parent’s contextual and personal factors and the child’s needs (duma, tshabalala & mji 2021). however, having worked with parents of children of disabilities over the last three decades and looking at evidence from literature, i found that there are many commonalities in parental experiences, some of which i shall expound upon later in this article. the beginning of my journey: seeking answers and finding none in 1988, i gave birth to my first child in the rural vhembe district, in the limpopo province of south africa. my child was born preterm and was in an incubator for a month. when we were discharged from the hospital, i did not know that my child was disabled. after a few months, i noticed that he was not reaching the expected physical developmental milestones like other children of his age. i suspected that something was amiss, and that the health professionals would be the right people to assist. i took him to the nearest hospital and explained the situation to the health professionals. i presented my child’s condition in my local language and the nurse translated for the doctor in english. they told me that all he needed was to do certain exercises and that with time he would be able to walk. i was advised to take him to physiotherapy and occupational therapy every fortnight, but no clear explanation was given of how the therapies were going to help my son. i tried inquiring about the cause of the disability, but i was told not to worry – ‘the child will be fine’ was the answer i received. at first, those words strengthened me, because i had trusted in the healthcare professionals whom i regarded as experts with solutions to my child’s problems. with time, i started feeling frustrated and hopeless because i was told the same thing repeatedly but noticed no progress with my child. he was always in hospital for therapy sessions without any noticeable improvement. my journey of raising a son with disability became a very lonely space for me as i could not find anyone who seemed to understand what i was going through at a personal and practical level. the staff at the hospital did not seem to have time to answer my questions or to explain things in a way that i could understand. i realised the challenge of being a non-english speaker in a system that did not try to provide information in languages and formats accessible to all. to make matters worse, the father of my child denied the pregnancy; neither was he interested in supporting me and my son after i gave birth. the pain of having to traverse the lonely space was excruciating. i experienced both emotional and physical strain, which i later learnt is a common reality of single mothers caring for children with disabilities (zuurmond et al. 2018). due to the absence of support and my lack of understanding of my child’s disability, i suffered from self-blame. i felt ashamed of myself, and i used to ask myself constantly, ‘why did i give birth to this kind of child? what was the cause? is it god’s punishment? am i bewitched?’ these were difficult questions to which i could not find answers. feeling helpless in the hands of healthcare professionals: power imbalances communicating with health care professionals was always a challenge due to the language barrier and the health care professionals’ unwillingness to involve me in my child’s treatment. this made me feel helpless. i was not given an opportunity to share my observations and experience of parenting my child and the knowledge i had gained from taking care of him. i felt i knew much more about his condition and i would have wanted to share my knowledge with the healthcare practitioners, but no room was given for that. i was also afraid to ask questions; i just had to take what i was told to do. gona et al. (2018) assert that health professionals underestimate the emotional distress and need for information experienced by parents and carers of children with disabilities. i remember when the physiotherapist gave me pamphlets to read that were written in english with pictures of children with disabilities. i could not read the pamphlet written in english, although i was stressed and desperately seeking for solutions for my child’s disability. the pamphlet was not helpful because i could not understand the language, neither did i have the courage to explain that i was not able to understand the information. i longed for a partnership with the healthcare service providers in which my voice as a mother and caregiver could be valued. such partnerships are of utmost importance for parent empowerment and to ensure optimal care for the child. when there is a communication barrier between the parent and the healthcare providers, the provision of healthcare proceeds with errors, poor quality and risks to patients’ safety (schyve 2007). kyeremateng et al. (2019) reported that almost all parents of children with disabilities in ghana visited health facilities to understand their children’s condition, and many were dissatisfied with the explanations given to them by health professionals. i had the same experience. i could not name my child’s condition until he was 3 years old, when i managed to learn this by chance. i was queuing with other parents of children with disabilities at the physiotherapy department when one of the staff members came outside and said, ‘parents of cp children should move from this queue and queue on the other side of the building’. i then knew that my child’s condition was cp. it was a big english word, and i was hearing it for the first time in my life. at that moment, i did not realise the two letters stood for ‘cerebral palsy’. every time when people asked me why i was carrying my child on my back going in and out of the hospital, my response was, ‘my child has “cp” problem’. it was the only answer i could give. i did not ask anything because i believed that professionals knew better. hemming and akhurst (2009) assert that parents are often faced with a dilemma as a result of the way professionals disclose a child’s condition and the period taken to support the parents in dealing with the challenges that come with having a child with a disability. i experienced this dilemma; for example, i was not sure whether to continue or stop attending therapy sessions because there was no progress. i developed mistrust towards health professionals which was exacerbated by the emotional pain and sadness of not receiving the support i needed. i felt unimportant in my child’s life and the false hope that i was given disempowered me. it was only later when my child was five years old that i started to seek support from other parents with children with disabilities. parental support orgnisations equipped me with knowledge and skills to advocate for my son and seek services for him and i am indebted to them until this day. conclusions this article presented my experiences of parenting a child with disability as a mother living in a rural context. i share this story with full knowledge of the changes that have occurred in south africa since the end of apartheid in 1994, which include the ushering in of new policies like the constitution of south africa’s section 24 which enshrines the right of everyone to an ‘environment that is not harmful to their health or well-being’ (republic of south africa 1996), the white paper on the rights of persons with disabilities (department of social development [dsd] 2016) and south africa’s signing and ratification of the uncrpd in 2007. there is, however, recent evidence from different rural south african settings reflecting the challenges of parenting a child with disabilities which have similarities with my own story (duma et.al. 2021; mudhovozi, maphula & mashamba 2012; tigere & makhubele 2019). tigere and makhubele (2019) interviewed parents of children with disabilities in sekhukhune district, a rural area in the limpopo province, and found that parents are not usually aware of their children’s disabilities, and this has negative effects on their caring responsibilities. research from other african contexts present similar findings; for example, a study conducted in the botswana, malawi and mpumalanga provinces of south africa by booyens, van pletzen and lorenzo (2015) reported that caregivers experienced difficulties in accessing information and services for children with disabilities. in ghana, zuurmond et al. (2019) reported that primary caregivers of children with cerebral palsy were unable to access health services, lacked information and were dissatisfied with the support they received from health professionals. it is imperative for healthcare professionals and parents to work together to support children with disabilities’ acquisition of functional abilities as emphasised by pedro and goldschmidt (2019). there is a need for combining parental knowledge and experiences and professional knowledge for the benefit of the child and the family. the lack of communication and partnership with healthcare professionals in my case led to poor progress in my son’s development, as i did not understand the healthcare professionals’ language. their approach did not motivate me to stimulate my child as i did not see my role in his therapy. ultimately, both my son and i were disadvantaged by the healthcare system. i cannot emphasise enough the importance of early diagnosis and early intervention and the provision of information to parents in the process of rehabilitation of their children with disabilities. appropriate counselling at a grassroots level – for example, at local clinics for those in rural areas – can minimise parents’ emotional challenges. counselling should be in the local language to ensure adequate and effective communication. parents also need to be informed about their rights as caregivers of children with disabilities and to be equipped with advocacy skills so that they do not see themselves as passive recipients of services and the professionals as experts who are not to be questioned. policy makers, healthcare service providers, disability organisations and all the other relevant stakeholders have a role to play in improving the lives of children with disabilities and their family caregivers, especially mothers, who in the south african context usually carry the burden of caring for these children (duma et al. 2021). more research on interaction of service providers with parents and the parents’ experiences in general is needed in driving the necessary change. acknowledgements competing interests the author declares that she has no financial or personal relationships which may have inappropriately influenced her in writing this article. author’s contributions m.c.s. is the sole author for this article. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability this article presented my experiences of parenting a child with disability as a mother living in a rural context. disclaimer the author acknowledges that any views expressed in the article are for her own and do not represent the official position of the university of limpopo or any funders related to the larger study. references booyens, m., van pletzen, 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https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-therights-of-persons-with-disabilities-2.html. zuurmond, m., nyante, g., baltussen, m., seeley, j., abanga, j., shakespeare, t. et al., 2019, ‘a support programme for caregivers of children with disabilities in ghana: understanding the impact on the wellbeing of caregivers’, child: care, health and development 45(1), 45–53. https://doi.org/10.1111/cch.12618 zuurmond, m., o’banion, d., gladstone, m., carsamar, s., kerac, m., baltussen, m. et al., 2018, ‘evaluating the impact of a community-based parent training programme for children with cerebral palsy in ghana’, plos one 13(9), 1–17. https://doi.org/10.1371/journal.pone.0202096 abstract introduction how south africa implemented primary healthcare challenges with implementation of primary healthcare in south africa the current rehabilitation status in south africa a case study of community service and related systemic challenges within the health system (a reflection of the first author’s experience) discussion acknowledging the existence of multiple options of healthcare conclusion: implications for disability acknowledgements references about the author(s) lieketseng ned centre for rehabilitation studies, department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, south africa lizahn cloete division of occupational therapy, department of interdisciplinary health sciences, faculty of medicine and health sciences, university of stellenbosch, south africa gubela mji centre for rehabilitation studies, department of interdisciplinary health sciences, faculty of medicine and health sciences, stellenbosch university, south africa citation ned, l., cloete, l. & mji, g., 2017, ‘the experiences and challenges faced by rehabilitation community service therapists within the south african primary healthcare health system’, african journal of disability 6(0), a311. https://doi.org/10.4102/ajod.v6i0.311 case studies the experiences and challenges faced by rehabilitation community service therapists within the south african primary healthcare health system lieketseng ned, lizahn cloete, gubela mji received: 13 sept. 2016; accepted: 23 may 2017; published: 26 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: twenty-two years after the promulgation of a plethora of progressive health policies since 1994, the south african public health system reflects a number of stumbling blocks regarding implementation. rehabilitation professionals are not sufficiently equipped nor allowed the opportunity to comprehensively implement primary healthcare (phc) from a bottom-up approach, thus engaging communities. training on addressing social health determinants and their impact on ill-health and health outcomes is inadequate. the inadequate understanding of the advocacy role that rehabilitation professionals could play in addressing social health determinants remains a challenge in healthcare. rehabilitation, a pillar of phc, remains poorly understood in terms of its role within the health system. aim: we argue for rehabilitation as a vehicle for addressing social determinants of health with community service practitioners playing a critical role in addressing the inequities within the healthcare package. setting: the article reflects the opportunities and challenges faced by rehabilitation community service therapists in the delivery of rehabilitation services in a rural area of the eastern cape province of south africa. methods: a single case study from the perspective of a researcher was used to explore the experience and reflection of the first author during her community service as an occupational therapist. results: the case study highlights some existing gaps within the delivery of rehabilitation services in the rural eastern cape. a community service package with a specific approach towards addressing social determinants of health for persons with disability at a community level is suggested. conclusion: advocating for a rehabilitation service package to shift to community-based levels is critical. it is envisaged that a community-based approach will facilitate an understanding of the barriers faced by persons with disabilities as constituting disability, thus facilitating learning about the disabling consequences of the rural environment coupled with the system as experienced by persons with disabilities. introduction in 1998, the south african department of health (doh), as a response to challenges associated with implementation of primary healthcare (phc), created a one-year period of community service, with focus on underserved, primarily rural, areas (doh 2000a). health professionals, initially doctors, dentists and pharmacists, were required to do community service on completion of their training. a further seven professional groups followed in 2003, including physiotherapists, occupational therapists, speech therapists, clinical psychologists, dieticians, radiographers and environmental health officers (doh 2000b). placing new graduates for community service has been (and still is) largely overshadowed by the lack of both human resources to supervise these new graduates and financial resources to enable efficient and effective delivery of appropriate services (hatcher et al. 2014). the gap between the newly qualified graduates’ skills set, the reality of service needs, context of service users and available resources of their services is a well-documented challenge (reid 2001). as the doh (2000, 2007) noted: ‘the main objective of community service internship by health professionals was to ensure improved provision of health services to all citizens of our country. in the process, this also provided our young professionals with an opportunity to develop skills, acquire knowledge, behaviour patterns and critical thinking that will help them in their professional development.’ (p. 1) with reference to district health institutions in particular, it was clear how this goal was aimed at bringing more services to the people and address insufficient human resources (reid 2001). however, south africa still faces shortages of human resources, especially within the public sector and in rural areas (doh 2011a). this shortage poses a challenge to the implementation of many health policies including the national health insurance (nhi) and undermines equity (doherty & couper 2016). hendricks et al. (2015) caution that inequities in health could be further exacerbated if the decentralisation proposed by the nhi gets poorly implemented. graduates placed in rural areas face inequities in health system and rehabilitation professionals such as occupational therapists and physiotherapists are often supervised by other professionals who have limited or no training in dealing with disability and rehabilitation (hatcher et al. 2014; reid & conco 1999). as the placement of more professionals is happening, new community-based training and service package models are required to equip graduates to serve in rural areas, be responsive to the needs and able to function in less resourced contexts (doherty & couper 2016; who 2010a). the process of creating a health system that is responsive to both disability and rehabilitation needs of people with physical, sensory, psychosocial and learning impairments is inevitably compromised by mediating differences in opinions for the identification of focus areas for service provision and resource allocation. professional development and supervision are crucial in order to build practitioner skills, equitably distribute and retain professionals in rural underserved areas (hatcher et al. 2014). worldwide, poverty and health disparities exist and are increasing (thomas 2014). poverty does not only exclude people from the healthcare systems’ health benefits but also restricts them from participating in decisions that affect their health (united nations 2013). despite some positive changes alluded to in the 2015 south african health review, south africa’s health outcomes remain below what is expected from the current health expenditure. there are existing gaps between policy imperatives and implementation of the healthcare system, and policy implementation is inefficient (mayosi et al. 2012; naledi, barron & schneider 2011). some of the reasons for the healthcare system’s ineffectiveness include (but are not limited to) inadequate implementation of phc and lack of contextual intersectoral action for social health determinants and indicators. healthcare workers are not sufficiently equipped to implement phc and have too little training on how to address the social health determinants of health and wellness. the advocacy role and actions that health and rehabilitation professionals could play to address social health determinants remain unrecognised within the healthcare system. for example, weeramanthri and bailie (2015) propose that the health status of communities could be addressed by providing basic needs of communities such as improvements in housing, sanitation, drinking water, education, employment, working conditions, food supply, transport infrastructure and other social health determinants. investing in these basic supports, as naledi et al. (2011) suggest, is critical in improving health outcomes. yet, such interventions remain poorly implemented within the current south african health system, resulting in a significant negative impact on the health sector (naledi et al. 2011). the reality of south africa is that the health system still operates in a context where the above-mentioned basic needs for health are still not present in many communities. this is especially relevant for a number of rural communities in the different provinces of south africa. the dominating focus of the health system on incidence and prevalence of diseases underestimates the importance of disease prevention, especially in resource-limited communities (dookie & singh 2012). naledi et al. (2011), for example, recount that different programmes within the national and local departments of health are working in parallel, particularly health promotion programmes which are often seen as the marginal players alongside bigger programmes such as hiv and tb. they also recount that in-service training is weak and often provided in programme-specific silos instead of holistically. these demonstrate a reductionist approach with its other limitations including limited interprofessional exposure, inadequate orientation in understanding the role of social determinants on health outcomes (diez roux 2012) and poor understanding of the advocacy role health and rehabilitation professionals could play in addressing social health determinants and limited capacity to effectively advocate (ng et al. 2015). the implication of the above-mentioned factors is a weak health system with professionals who continue to lean more towards an institution-based medical model and disease-specific ways of addressing ill-health, thereby failing to provide client-centred services that are contextually specific with focus on health promotion and disease prevention. reductionist approaches furthermore tend to perpetuate the notion of clients being passive receivers of services rather than proactively participating in the prevention of ill-health and promotion of health within their communities (naledi et al. 2011). reductionism may perpetuate a health system that is reliant on expert-driven and standardised approaches, which are central to biomedicine within the health system and hardly address the challenges of social health determinants that clients face at community level. hence, it is argued that south africa has failed to establish a strong district health system (dhs) and, particularly, to develop and manage human resource capacity at the district level (mayosi et al. 2012; naledi et al. 2011), which would connect with populations. during policy implementation, there is still no clear integrated plan in place for human resource support that will deal with health-related basic support challenges such as water, sanitation and food security (as main determinants of health and wellness) at community level. despite the efforts to manage human resources for health (doh 2011b), the resource allocation for implementation remains inadequate. provincial governments still control much of the financial resources and maintain decision making power. in addition, the institution-based medical model still dominates, making it difficult to act innovatively and implement new strategies that create bridges between health institutions and the communities they serve (dookie & singh 2012; world health organization 2007). infrastructure challenges in rural areas exacerbate these challenges, especially for the rehabilitation health service user (gaede & versteeg 2011; matsoso & strachan 2011; versteeg, du toit & couper 2013), with regard to achieving their rehabilitation goals. if the infrastructure at community level is not conducive, this can act as a barrier to health, wellness and community participation. this article uses first-hand experience contextualised by literature to highlight critical service issues and to advocate for rehabilitation as a vehicle for strengthening the health system to address social determinants of health. in this case, community service practitioners are positioned as critical human resources to potentially fill the highlighted gaps. how south africa implemented primary healthcare the 1994 political changes that moved south africa from an apartheid era to a democratic elected government brought a plethora of policies that were developed with the aim of bringing change in the lives of south africans, particularly vulnerable groups such as persons with disabilities in underserved and rural environments. the major focus of the change included developing a healthcare delivery system that is based on a decentralised phc district system. some of the fundamental improvements related to the health arena included an increase in basic infrastructure (which included housing, water and sanitation) as well as the implementation of the strategies for poverty alleviation (mji 2012). the 1997 white paper for the transformation of the health system ushered us into an era of health service transformation (doh 1997). the principles that were underpinned by the alma ata declaration were conceptualised and plans proposed for implementation by 2000. the shift was structurally focused on building and upgrading clinics as well as the overall establishment of the dhs. this comprehensive phc as envisioned at alma ata explicitly outlined a strategy that would respond equitably, appropriately and effectively to basic health needs and also address the underlying social, economic and political causes of poor health (county of los angeles public health 2013; magnussen, ehiri & jolly 2004). successful implementation of phc thus required a change in socioeconomic status, distribution of resources and a focus on responsive health systems with emphasis on basic health services. the approach was underpinned by all the factors key to the success of a public healthcare system such as universal accessibility, emphasis on disease prevention, health promotion, community participation, self-reliance, rehabilitation and intersectoral collaboration (dookie & singh 2012; magnussen et al. 2004). the dhs, as vehicle for phc, was formalised in 2003 (republic of south africa 2005). although phc, as social justice policy in itself was combined with other legislative policy and resource allocation measures, it has not been enough to meet transformation targets for the improvement of population health (rispel 2016). health systems’ activities and their outcomes are better obtained when people’s basic needs are met, first and foremost. a prerequisite for meeting basic health needs is that a health system’s infrastructure allows people to guide the process of responding to their health needs according to their context (matsoso & strachan 2011; world health organization 2010a). that was the health vision of the 1994 newly elected democratic government of south africa. it appeared that this vision was being driven by a deeper understanding that health is life (mji 2012) and any tangible success of the newly elected government stood on the premise that the area of health should be given priority. realistically, instead of implementing this comprehensive phc strategy of 1978, it appears that healthcare service provision focused mainly on providing selective primary care, instead of providing an integrated phc service that addresses social health determinants (dookie & singh 2012). challenges with implementation of primary healthcare in south africa considering the phc philosophy’s potential to contribute to improved community health, challenges exist relating to effective community participation, intersectoral collaboration and optimal use of available resources (dookie & singh 2012; morgan & ziglio 2007; naledi et al. 2011). such available resources include indigenous health knowledge that is lying dormant at the community level especially in rural areas. mji (2012) asserts that as much as the new government’s health agenda was geared towards shifting both human and financial resources from the large incumbent tertiary institutions to the district level, initially, there remained no clear plan regarding the percentage of shifts. this unclear plan could explain the inequities still experienced in human resources for health with rural areas being disadvantaged the most (hatcher et al. 2014). it was not clear how these sectors would relate to each other or to referral systems. when referral happens, there are no human resources to pick up these referrals at the community level. the most challenging area that was neglected at these service points of health delivery was health promotion and disease prevention information for both primary and secondary illness. provision of a limited range of phc services thus could perpetuate the revolving door syndrome for health conditions that could be prevented in the first place (mlenzana & mji 2010). the situation at the community healthcare level is difficult because of a shortage of human resources, resource allocation problems and the type of model used to deliver phc. overcrowding at these facilities is the order of the day (anc 1994; cook 2005; gessler, msuya & nkunya 1995; mash 2004; mlenzana & mji 2010; zonke 2005). the lack of proper planning on implementation of phc by the south african government resulted in a phc system that is still burdened with: absorbing most of the budget but failing to address inequities in health at ground level and a phc system that is predominantly used by the poor who remain sick as inequities persist (mji 2012). fragmentation, with little attempt at an integrated, interdisciplinary approach that links phc to health promotion and disease prevention (dookie & singh 2012; werner & sanders 1997). poor or inappropriate patient education and advice by healthcare providers and no referral to secondary levels of healthcare provision for patients with complex health conditions (mlenzana & mji 2010). lack of interprofessional research initiatives (mji 2012) and evidence on local phc models that have worked, or the moving of evidence to action. in africa specifically, much of the research has been concentrated in english-speaking countries. lack of commitment to infrastructure and human resources for the implementation of rehabilitation, thus denying health promotion, disease prevention and participation, which would facilitate wellness and quality of life, all critical elements of phc (mji 2012). unspent budgets because of poor planning and a lack of human resources. this exacerbates health inequalities and inadequate service delivery (mlenzana & mji 2010). the above-mentioned problems were a result of the insufficient attention given to disease prevention, health promotion and community participation as part of the implementation of phc (dookie & singh 2012; hess-april 2013; mji 2012; sherry 2015). following these failures, phc re-engineering which emphasised community-based services by reaching out to households (doh 2010) and nhi (doh 2011a) were introduced. in response to these developments, the western cape doh (2013) developed the healthcare 2030 draft, which also poorly defined rehabilitation services. part of the challenge is that none of these above-mentioned policies developed a service package for rehabilitation services (hess-april 2013). the shortcoming was then acknowledged and a national task team was constituted to formulate a rehabilitation service delivery strategy within the phc framework. to date, the framework and strategy for disability and rehabilitation (fsdrsa) (doh 2015) was developed. it is left to be seen how it will improve the challenges of implementing phc. the current rehabilitation status in south africa rehabilitation is a pillar of phc and has as its primary goal the integration of persons with disabilities within their environments. sherry (2015) notes that rehabilitation remains excluded and poorly understood in healthcare. as a component of healthcare, access to rehabilitation is limited in both poorly resourced and well-resourced provinces (with rural areas being far worse) with human resources for the provision of these services being subject to challenges, especially in the public sector (sherry 2015). the national rehabilitation policy suggested that rehabilitation services must be delivered as part of phc according to community-based rehabilitation (cbr) principles (doh 2000, 2010). cbr shared common principles with phc; however, the challenge has been the limited understanding that cbr not only refers to services provided outside of institutions but also refers to a general philosophy which aims at the inclusion and full participation of people with disabilities in all aspects of community life (sherry 2015). the existing fsdrsa appears to reflect this understanding (doh 2015). it is then critical for issues raised in this paper to be noted as provinces are tasked to develop the implementation plan for the fsdrsa (doh 2015). the phc approach, on which healthcare service delivery is based, highlights the need for these services to be comprehensive and transformative at the community level (doh 2013), regarding community members as active participants in determining steps that will influence their health (sherry 2016). a phc approach challenges societies to identify and address the causes of poor health in their communities, make provision for basic health needs and encourage communities to become empowered (dookie & singh 2012; sherry 2016). although rehabilitation is considered as one of the components of phc, it is rarely included in phc programmes (mpofu 1995; sherry 2015). the phc provision continues to be fragmented and uncoordinated with some rehabilitation services less accessible to some sections of society than to others. the quest to address inequities and improve health reveals a tendency to focus on identifying the problems and needs of populations who require professional resources, rather than on the assets that already exist within these populations. these neglected assets include the health-related indigenous knowledge (ik) that is lying dormant in communities. this deficit perspective creates a high level of dependency on hospital and welfare services (morgan & ziglio 2007). it (deficit approach) also differs substantially from an ik system way of addressing ill health, in which healers are merely facilitators, with healing being an interactive experience for clients, their families and the healer (moshabela, zuma & gaede 2016). in this system, the family plays an active participatory role in tracing the start of illness including the events that might have contributed. in this regard, for healthcare to not be conversant with the cultural ways of the community seems problematic and divides healthcare, leaving critical components such as rehabilitation on the margins. indigenous knowledge is a valuable resource, but has historically not been deployed for health gain in south africa and elsewhere in the world. health-related scientific knowledge has been and still is being prioritised over other forms of knowledge like ik, resulting in a hierarchical classification of knowledge (moshabela et al. 2016). in this case, ik is practised in secrecy in indigenous communities and is thus lost to society. for example, boneham and sixsmith (2005) found, in a northern town in the uk, that the voices of indigenous older women were rarely heard in debates about health. similarly, in south africa, a study by mji (2012) suggested the need for understanding health from the perspective of the users, especially the older members of indigenous communities as they most often give advice when a family member is ill. this study demonstrated the tensions, mistrust and conflict between the health system and the community as indigenous communities felt that the hospitals had brought ill health to their communities by not focusing on what they perceive as critical indicators of health, which are social health determinants. the who definition of health states that health is not merely the absence of disease or infirmity but a state of complete physical, mental and social well-being. in mji’s (2012) study, the older community members criticised this definition by highlighting the absence of critical aspects of health for their communities in this definition. mji (2012) shared a view of health, as described by older xhosa women in madwaleni (eastern cape), which includes (amongst other things) being able to participate in the key activities and functions of their villages, being able to produce food for the village as well as bringing up children from childhood to adulthood. when these social health determinants are incorporated into healthcare, they are effective at the level of disease prevention and health promotion (dookie & singh 2012; sherry 2015). though a promise was made of officially integrating traditional healers into the nhi landscape following the appointment of an interim traditional health practitioners council in pretoria on 12 february 2013, there is a glaring absence of both indigenous approaches to healthcare and indigenous healers in the white paper on the nhi. this raises questions with regard to whether such community-specific definitions of ik systems (moshabela et al. 2016) would ever be recognised for the critical contribution and role they could play in the implementation of re-engineering of phc, the new health plans on nhi and the implementation of the fsdrsa for policy aspirations to be realised at ground level. this is particularly critical as various studies still indicate challenges and tensions related to poor recognition of the indigenous health system (mji 2012; moshabela et al. 2016). its recognition remains symbolic on policy. the above indigenous understanding of health by mji (2012) reveals the notion of health as an active process of participation is often not made explicit by rehabilitation professionals. this definition strongly reinforces rehabilitation as a critical aspect of health. the different conceptualisations of what it means to be healthy within biomedicine and indigenous perspectives (moshabela et al. 2016) invite debate to clarify possible disjunctures in service planning and service provision. the neglect of the indigenous perspective explains sherry’s assertion that rehabilitation continues to be excluded and poorly understood within healthcare (2015). the above indigenous perspective on health has the potential to fill the gap as it situates rehabilitation within public healthcare. at phc level, appropriate and relevant rehabilitation services will facilitate engagement in functional activities that will enhance the quality of life and wellness of community members. we further posit rehabilitation as a necessary imperative for those who already have disabilities to assist with secondary prevention and facilitate their active engagement and participation, which will lead to successful community integration. this successful integration can only happen when cultural and contextual issues of that population are taken into consideration. below is a case study illustrating challenges within a health system as experienced by a graduate during her year of community service practice. a case study is very useful when seeking to explain the how and the why of social phenomena in context (yin 2014). case study, as a methodological design arises from a desire to understand complex social issues by allowing investigators to focus on a ‘case’ and retain a holistic and real-world view perspective. this method was appropriate to interrogate the complex issues brought forward in this paper. a case study of community service and related systemic challenges within the health system (a reflection of the first author’s experience) in 2010, the first author was placed in a rural area for her occupational therapy community service year in the eastern cape province of south africa. this area was and still is an under-resourced, rural context where geographical location is a huge barrier to accessing general services. the community is characterised by poor infrastructure and scattered villages in which the majority of households do not have access to potable water, electricity or proper sanitation. public transport is limited and the sub-standard gravel roads make travelling difficult, long and sometimes impossible when the weather is bad. when people travel to town in the morning or when they are referred by the clinic to the district hospital, they return late in the afternoon, leaving the home, its activities and often children unattended or watched by a neighbour. primary care clinics were available to surrounding villages and managed by nurses. no rehabilitation therapists were designated to these clinics because rehabilitation services are not currently included in the policies regulating re-engineered district health teams (pillay & barron 2011). many adults and children with physical, sensory and psychosocial disabilities were confined to their homes with no access to rehabilitation services, this despite the community service policy objective of ensuring accessible and equitable comprehensive healthcare. the majority of referrals for rehabilitation at the hospital were for patients with neurological conditions such as strokes in adults and cerebral palsy in children. the clinic statistics indicated health problems typical of a rural context with deep-rooted poverty and a high prevalence of major health issues, that is, tb, hiv or aids, high teenage pregnancy and chronic diseases of lifestyle (mainly hypertension, arthritis, diabetes and mental health disorders including substance-induced psychosis). a high unemployment rate was evident with many people sustaining their livelihood through selling products on the streets while others had left the community in search of work in the cities. the goal of our work was the provision of rehabilitation programmes that focused on health promotion, education and prevention and early identification at community level. it soon became evident that achieving this goal was challenging as it required skills that i was not sufficiently taught during my undergraduate training, particularly advocacy skills. i often felt ill-prepared for the task at hand. we had to be strategic about accessing transport and collaborated with other sectors like social development and the school nurses to access lifts from their transport. we became familiar with the other services provided by other sectors and collaborated in terms of referrals and case discussions. we received invitations to schools and clinics for health promotion and health education events. our work at community level, initiated by requests from the school nurses, was often disregarded by hospital management, despite the fact that it gave an increasing number of patients’ access to rehabilitation and care. our usual working day at the hospital involved sitting and waiting for clients. the aim to raise awareness of the availability of rehabilitation services and thus the health promotion and disease prevention benefits thereof could not be achieved. we felt that even within the institution, rehabilitation was dismissed by hospital management, nurses and doctors, with no prioritisation of resources for rehabilitation. this was exemplified by the refusal of the nurses and doctors to attend a seminar, which would have introduced them to our rehabilitation service, work out a referral system and how we could work more efficiently together as a team instead of silos. it was also demonstrated by limited or no budget allocation. they would say ‘we prioritise essential services (read medical services)’. this reflected a disregard for collaborative practice and highlighted challenges relating to professional superiority versus mutual respect. the lack of interest on a basic principle of teamwork undermined interdisciplinary and collaborative practice, referral pathways and continuum of care and resulted in poor utilisation of already limited resources. furthermore, service users are not aware of the services available to them and how they can access them. there is no community participation in the design of these services, and often, some of the accessibility barriers are the already mentioned ineffective systemic and structural issues. discussion there is no doubt that implementing a one-year community service programme for newly graduated health professionals does significantly improve the availability of human resources within the public health sector system. however, the ineffective structures and systems to support this community service initiative fail to yield an impact on the opportunities available to reach individuals in need of rehabilitation services. the inadequate impact may in turn compromise health outcomes of communities. institutionalisation, ineffective management, inaccessibility, lack of transport for professionals and clients and inequity in distribution of human and material resources continue to be barriers to the delivery of services at phc level by compulsory community service providers including medical doctors, dentists, speech language-and-hearing therapy professionals and dieticians in south africa (khan, knight & esterhuizen 2009; mostert-wentzel, frantz & van rooijen 2013; paterson, green & maunder 2007; penn, mupawose & stein 2009; ramklass 2009; reid 2001; reid & conco 1999). some of the implications presented by this case study include services that continue to be inaccessible while rehabilitation professionals wait in their consultation rooms in the institutions for persons with disabilities to come to them for services. these clients remain unaware of the services available to them (mji 2012; ned 2013) and when they receive these, they often feel patronised by inappropriate treatment that do not address the social determinants of health (mostert-wentzel et al. 2013). additionally, institution-bound providers may choose to leave the public sector or even the country because of low morale (mostert-wentzel et al. 2013). a single interpretive case study (hess-april 2013) on occupational therapy community service providers in under-resourced rural communities revealed these several challenges as posed by the settings of practice. the dominance of the medical model (we see this in the imposed institutionalised services approach instead of providing cbr) and lack of resources to a system of bureaucracy remain the biggest encountered challenges documented (hess-april 2013). hess-april (2013) also found that the health system was not ready to accommodate the community service providers’ practice, though they had been equipped to provide services as guided by the local needs thus resulting in hegemony in practice. as shown in the reflective case presented and that of hess-april (2013), this hegemonic encounter makes the community service providers display attitudes of defeatism, feelings of guilt, despondency and powerlessness. the skills to respond to power dynamics and interact with people in positions of power appear to be lacking (hess-april 2013). it is recognised that the system needs to change but rehabilitation professionals also need to consider how they could develop and implement actions to address the system in order for their practice to become more facilitative of change. skills such as advocacy, how to facilitate collaboration, negotiation, ability to influence decision making and conflict resolution could make a difference to the experienced situation (hess-april 2013). the content covered by undergraduate curricula in the health sciences limit students’ appreciation of health and how to address the underlying determinants of health. the dominating institutionalisation of services also hinders the providers from understanding these communities of practice. as a result, rehabilitation professionals fail to understand the health-related issues in the communities they are providing a service to. competence to respond to cultural and diverse contextual demands is fostered when professionals engage at community level (wentzel, frantz & van rooijen 2013). hess-april (2013) concludes that for community service providers to impact the contexts in which they practice, their education must ensure the development of competence to deal with the complexities of community service practice. this implies framing their preparation not just as learning but as a process of critical reflexivity that equips them to respond to power dynamics and intervene in matters as active agents of change. early discharge from tertiary and secondary levels of care and referral to primary level of care is still a problem experienced with no follow-up at community level, thereby impacting negatively on the community integration of persons with disabilities post-discharge as described by zonke (2005) more than 10 years back. as per the dhs, part of the role of district hospitals was (is) to give support to rehabilitation services in the clinics and community, conduct disability awareness programmes and support the reintegration of persons with disabilities into the community (doh 2002). however, insufficient attention had been given to the implementation of the phc approach, which includes taking comprehensive services to communities with emphasis on disease prevention, health promotion and community participation. hence, the later focus for phc re-engineering aimed at the delivery of such services (doh 2010) while the introduction of nhi aimed to ensure universal health coverage (doh 2011a). in response to these developments, the western cape doh (2013) developed the healthcare 2030 draft, which also poorly defined rehabilitation services. part of the challenge is that none of these above-mentioned policies developed a service package for rehabilitation services (hess-april 2013) while south africa is said to suffer from a quadruple burden of disease: maternal and child mortality, hiv and tb, non-communicable diseases and violence and injury (pillay & barron 2011). rehabilitation indeed remains to be excluded and poorly understood within healthcare as described by sherry (2015). furthermore, planned intervention programmes are not responsive and aligned to the actual needs of the community, resulting in poor continuum of care and secondary impairments. the result of this is a continued cycle of disease, ill health and disabilities in communities. the disjuncture between training and health system the experience narrated in this case study demonstrates that the operational systems within the facilities did not provide opportunities for newly graduated professionals to offer their rehabilitation skills. hence, in situations that required contextually relevant problem-solving, these rehabilitation professional felt ill-prepared. a consistent, strong advocacy strategy for cbr services is required at different levels in the hospital to ensure buy-in from management. a study on community service physiotherapists reveals that the compulsory community service provides opportunities for comprehensive care in a variety of settings, from homes, clinics and schools to hospitals (mostert-wentzel et al. 2013). despite this evidence, the majority of community service therapists are still systemically and structurally forced to offer institution-based services. as such, they are not able to provide comprehensive contextually relevant rehabilitation at community level. mostert-wentzel et al. (2013) posited the absence of service learning in authentic diverse contexts as a barrier that hinders professional development and cultural competence. furthermore, advocacy and community mobilisation components within rehabilitation remain underdeveloped. similarly, new graduates doing community service often experience the disjuncture between their training received and what the system allows for (frenk et al. 2010; hess-april 2013). thus, there is a need to facilitate alignment between higher education curricula and the operationalisation of health policies such as the fsdrsa (doh 2015). comprehensive phc should not be limited in theory but emphasis needs to be placed on upskilling graduates to meet the service needs of rural communities while the health system allows room for such to be provided. inadequate policy literacy there is also the issue of inadequate policy literacy amongst rehabilitation professionals, health service users as well as the managers of community service professionals (dube 2006; duncan et al. 2011; meyiwa 2010; sherry 2011). based on the first author’s experience, it seemed that managers were not aware of their obligation in terms of policies as well as the obligation of the staff they are supervising, leading to a lack of responsibility for implementation of current policies by rehabilitation professionals, especially in systems where red tape hampers service delivery. similarly, rispel (2016) refers to what reid and conco (1999) found as general management deficiencies in the public health system, unsatisfactory conditions of service and resource constraints as barriers to providing efficient and effective health and rehabilitation services. strengthening the health system through focusing on social health determinants the health system needs to start taking its rightful position by acknowledging the critical role of the social determinants of health in determining health outcomes and addressing equity issues in health. the health system should play a key role as an umbrella body driving intersectoral collaborations as one of its successes in achieving good health outcomes. this focus on social determinants drive relies heavily on partnerships with other sectors and communities to draw its indicators from the people it serves. the community service therapists could address these issues at community level, receiving and following up on clients to facilitate their integration. at community level, community service therapists would act as generalists intervening on a wide spectrum of issues that reflect the country’s quadruple burden of disease and disability (mostert-wentzel et al. 2013). in line with the national policies such as the re-engineering phc and the fsdrsa (doh 2015), addressing the burden of disease and disability includes addressing the social determinants of ill-health through prioritisation of disease prevention, health education and promotion. this implies that, in community service, the holistic rehabilitation team would address broader issues – specifically poverty. thus, more opportunities to work with other sectors as demonstrated by the cbr (who 2010b) as a community development strategy to understand and address the underlying determinants of health as well as equity issues. it is worth noting that the cbr has been included in the current fsdrsa (doh 2015). the community service therapists would play more of a role in facilitating, mediating between the community and sectors as well as assisting with advocacy work at community level. though rehabilitation professionals may feel that this falls outside their scope of practice, mostert-wentzel et al. (2013) argue that rehabilitation could play a significant role doing advocacy work and driving intersectoral collaboration that could improve referrals to the relevant people who may address some of these social determinants. often in these rural areas, other professionals and communities are unaware of the rehabilitation professionals and their services. rehabilitation professionals can facilitate community participation in food production as a way to address the poverty issues. these social determinants of health must be addressed as well in order to fully achieve issues related to access, equity, affordability and good quality of care within our current health system. the indicators drawn from the community could then be used to draw up intervention plans, inform policy development and identify possibilities for research needed. acknowledging the existence of multiple options of healthcare in critically analysing the institution-based healthcare system and the role of patients as passive recipients of healthcare services, the healthcare system perpetuates dependency in the expert-driven and standardised approach it follows without building on what communities have and how they have been addressing health in the absence of a health practitioner (flint 2015; moshabela et al. 2016). unlike biomedicine, indigenous ways of health are often communal with populations being actively engaged in the processes of promoting their health, and interventions are often tailored to the requirements of individuals and their families (flint 2015; mji 2012). hence mji (2012) calls for community engagement, which could be facilitated by these community service therapists in order to draw health and rehabilitation indicators, addressing health in a culturally, contextually relevant and equitable manner. this is particularly critical because of the existence of multiple options available to healthcare users in south africa. yet, existing healthcare systems do not collaborate because of conflicting paradigms. the conflict of values and interests, mistrust and tension has brought ill health to many communities by disturbing the harmony of communities and their own way of living and managing their health (mji 2012). the focus on ‘fixing’ health problems leads to communities wanting and lacking, thus the degeneration of structures and support already existing in communities. if the community-based health systems were non-existent all along, the question would be how were people surviving? indigenous healthcare recognises the significance of the person’s personal experiences in ill health; ill health has its origins in the spirit world, for example one may be unhappy, not at peace, facing conflict in the home because of broken relationships, fear, etc. in contrast, biomedicine has no explanation for this aspect of illness and appears to see diseases as randomly contracted (flint & payne 2013; mji 2012). thus, social determinants of illness are marginalised by biomedicine, whereas they are perceived as causal factors for disease in these indigenous communities. indigenous people are calling for a health system that does not separate them from their family and community in the intervention processes, and they are asking that their body, mind and spirit not be separated. we argue that the dominant healthcare system is still limited in terms of addressing the spiritual component of populations, thus threatening the future of healthcare (mji 2012; moshabela et al. 2016; wreford 2005). the health system cannot afford to regard diseases in isolation, but needs to look at the well-being of communities and at broader health indicators of participation, food production and the grooming of children (mji 2012) as we navigate the re-engineering of phc, introduction of nhi and implementation of the fsdrsa. these broader health indicators are what community service professionals could tap into at community level and bridge the widening gap between populations and rehabilitation services. while the intention of phc as implemented in south africa was to improve the health of public health system users as a main priority, this outcome seems to have failed (braathen et al. 2013; mlenzana & mji 2010; vergunst et al. 2015). but, how does rehabilitation fit into such an approach and does rehabilitation qualify as a strategy for addressing some of these social determinants of health? situating rehabilitation one of the key goals of rehabilitation is participation at all levels of community. this participation improves functionality and contributes to wellness and quality of life. it is proposed that access to rehabilitation services is a good strategy for building an effective health system that addresses social determinants for health and well-being. rehabilitation should be central to any public health approach and should not remain a privileged service for just a few clients who are in a position to pay for rehabilitation services. rehabilitation has to move out of the medical model and take its rightful position within the public health arena if it aims at fulfilling its role as proposed in the 1978 strategy of phc. for rehabilitation to achieve this, it needs to be guided by cultural and contextual issues of the people it renders services to and draw relevant and responsive programmes that will not focus only on a person with already existing impairments but will also cater for everybody, thereby engaging the community in disease prevention and health promotion programmes. this will build healthy empowered communities. kaseje et al. (2005) consider the notion of community empowerment as the involvement of community members in the design of their own health service provision, acknowledging existing assets which are incorporated into their conceptualisation of health. taking a citizen-centred approach to designing a dhs would facilitate the implementation of a responsive phc system (fryatti, hunteri & matsosoi 2014). citizen-centred service delivery ensures that clients ‘get what they want and that resources are allocated accordingly’ (pal 2006:230) by focusing on citizens first and assessing their needs and levels of satisfaction (baig, dua & riefberg 2014). in combination with the batho pele principles (khoza & du toit 2011) a citizen-centred approach may nurture accountability of the health system services to its users. the current re-engineering of phc could provide extraordinary opportunities for community service professionals, particularly rehabilitation professionals, to extend their scope of practice across the sectors as well as across the different levels of care, especially at a community level with the aim to strengthen the health service. however, the already mentioned barriers do need to receive serious attention and the scope of practice of community service professionals does need to be revised and interpreted within the tenets of the phc strategy. there is a need to look locally for innovations related to phc and debate about options of what works and what does not work while keeping a close watch on quality, access, equity and costs (fryatti et al. 2014). users of the public sector call for professionals to come to the communities to listen, learn and join hands with the users of health services at community level (ned 2013). responding to this call will assist in planning and providing services that are responsive to population needs as well as their contextual and cultural demands and would facilitate communities becoming active participants in the creation of their health and developing solutions for improving their health status. conclusion: implications for disability the reality is that, within this health system, persons with disabilities in rural areas continue to struggle with healthcare and rehabilitation. the extricable link between poverty, disability and rurality presents persons with disabilities with many other challenges for community integration. healthcare and rehabilitation need to prevent disabilities and the worsening of existing disabilities. free healthcare is not always free for persons with disabilities who live in rural areas as they incur transport (amongst others) expenses and difficulties getting to nearest facilities considering the poor infrastructure, high levels of unemployment and limited access to key services like healthcare and education (vergunst 2016). deconstructing the institutionalisation of services through a process of transversalism (advocating and shifting) is important for rehabilitation professionals to learn about the disabling consequences of the rural environment as experienced by persons with disabilities. professionals need to understand that daily struggles and barriers faced by persons with disabilities particularly in rural areas constitute the disability. this understanding would allow for reflexivity amongst the professionals and the facilitation of collaboration with persons with disabilities to inform contextually responsive health and rehabilitation services that address disability issues at community level and address the barriers hindering full community integration. collaboration between communities and the professionals would birth a comprehensive understanding of how to effectively address disability issues in context. it could also interrogate the design of the health system with regard to the different levels of care and availability of human and material resources for such services in all levels. it is worth highlighting that the community should be recognised and used effectively as the primary care level where persons with disabilities are to be successfully integrated. in the process of partnering with communities, this suggested process of rooting and shifting is important so that rehabilitation professionals are careful not to reproduce the same exclusion and marginalisation of persons with disabilities. rehabilitation professionals should be conscious of the hegemonies they maintain and the political dynamics (the institutionalisation as an oppressive space), therefore further silencing persons with disabilities and limiting their full integration into their communities. if we do not become conscious and analyse these oppressive forces embedded within the system and within which we are maintaining in the way we practise rehabilitation in rural areas, we will never understand why persons with disabilities either do not come back for follow-ups or why they do not find meaning in these services and why they constantly struggle to be integrated post-discharge from the institutions. more research in this regard is needed. this approach would promote a way of looking at rehabilitation from the user’s perspective, bringing the whole issue of participation and a way of living that arises from the users’ definitions of health. the rehabilitation service should be informed by the communities it serves and align itself with the service needs of these communities through drawing on the knowledge of the community. this would halt the promotion of sick communities and support communities in creating health for themselves. a true participatory sense of a population-centred approach would emerge and a true sense of ‘nothing about us without us’ will hold true. the social health determinant approach focusing on access to rehabilitation services as a preventative measure will indirectly address the quadruple burden of disease and disability as experienced by the most vulnerable populations in south africa. kaseje et al. (2005) proposed a dialogue spiral involving all citizens to contribute to service development. in the same way, persons with disabilities and their communities could be empowered to co-plan appropriate and relevant rehabilitation services and play an active role in maintaining their full integration. community service professionals could work with health workers from the health sector, development workers from social development, traditional leaders in their different levels and local government to assist communities to assert themselves and participate in activities that facilitate better integration of persons with disabilities in their villages. these other levels of care, such as the home-based carers and community-based workers, could be further explored in terms of how they can work together and complement the community service rehabilitation professionals in providing continuity of care, linking phc with existing community-based developments while also fostering reciprocal capacity building in the process (ned 2013). this includes exploring the health system already existing in communities, such as the traditional health system. it is believed that this teamwork approach could further strengthen the dhs and its decentralisation process, thereby fostering meaningful and dignified community participation of persons with disabilities. it would also strengthen the advocacy skills of community service therapists, with improved use of bottom-up approaches to connecting with populations. sherry (2016) concurs and suggests that the missing layer is empowered and empowering engagement between rural people with disabilities and phc workers in south africa. she asserts that rehabilitation professionals also constitute a resource for the broader phc team, providing both formal and informal training on disability and specific input on adapting health services to take account of disability. thus, persons with disabilities, when empowered, may also play a role as critical rehabilitation team players as peer supporters and community rehab workers (amongst other players). this teamwork would strengthen the advocacy work and mobilise resources to better facilitate full community integration of persons with disabilities. it is our role as rehabilitation and disability professionals to then facilitate the participation valued by persons with disabilities, participation that is empowering characterised by collaboration and shared understanding and power (sherry 2016). for this to effectively happen, rehabilitation professionals need to open up to unlearn old ways and relearn from communities they serve. they also need to understand that rehabilitation is a fluid entity that is influenced by both contextual and cultural aspects of the communities they serve. the best indicators for the rehabilitation of a population are those drawn at community level. acknowledgements the authors acknowledge the opportunity of community service which has been a platform to critically engage with the health system and highlight key issues for consideration as done in this article if we are to address inequities. the reviewers for the stimulating feedback are highly appreciated. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced the writing of this article. authors’ contributions l.n. provided the case study drawing from her community service experience. she conceptualised, wrote and prepared all drafts of the manuscript for publication. l.c. and g.m. assisted with conceptualisation and provided guidance and input in reworked drafts of this manuscript. all authors contributed substantially to the editorial work till completion. references african national congress (anc), 1994, a basic guide to the reconstruction and development programme, south africa: a policy (framework), umanyano publications, johannesburg. baig, a., dua, a. & riefberg, v., 2014, putting 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south africa. zühlke, l.j. & engel, m., 2013, ‘the importance of awareness and education in prevention and control of rhd’, global heart 8(3), 235–239. abstract introduction methods results discussion conclusion acknowledgements references appendix 1 about the author(s) ericka p. von kaeppler institute of global orthopaedics and traumatology, university of california san francisco, san francisco, united states of america alexander hetherington institute of global orthopaedics and traumatology, university of california san francisco, san francisco, united states of america claire a. donnelley institute of global orthopaedics and traumatology, university of california san francisco, san francisco, united states of america syed h. ali institute of global orthopaedics and traumatology, university of california san francisco, san francisco, united states of america corin shirley institute of global orthopaedics and traumatology, university of california san francisco, san francisco, united states of america sravya t. challa institute of global orthopaedics and traumatology, university of california san francisco, san francisco, united states of america emily lutyens legworks, inc., buffalo, united states of america billy t. haonga department of orthopaedic surgery, muhimbili orthopaedic institute, dar es salaam, tanzania saam morshed institute of global orthopaedics and traumatology, university of california san francisco, san francisco, united states of america jan andrysek legworks, inc., buffalo, united states of america bloorview research institute, holland bloorview kids rehabilitation hospital, toronto, canada david w. shearer institute of global orthopaedics and traumatology, university of california san francisco, san francisco, united states of america citation von kaeppler, e.p., hetherington, a., donnelley, c.a., ali, s.h., shirley, c., challa, s.t. et al., 2021, ‘impact of prostheses on quality of life and functional status of transfemoral amputees in tanzania’, african journal of disability 10(0), a839. https://doi.org/10.4102/ajod.v10i0.839 original research impact of prostheses on quality of life and functional status of transfemoral amputees in tanzania ericka p. von kaeppler, alexander hetherington, claire a. donnelley, syed h. ali, corin shirley, sravya t. challa, emily lutyens, billy t. haonga, saam morshed, jan andrysek, david w. shearer received: 23 dec. 2020; accepted: 24 may 2021; published: 07 sept. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the rise of diabetes and traumatic injury has increased limb loss-related morbidity in lowand middle-income countries (lmics). despite this, the majority of amputees in lmics have no access to prosthetic devices, and the magnitude of prosthesis impact on quality of life (qol ) and function has not been quantified. objectives: quantify the impact of prostheses on qol and function in tanzanian transfemoral amputees. method: a prospective cohort study was conducted. transfemoral amputees at muhimbili orthopaedic institute were assessed twice before and three times after prosthetic fitting using euroqol-5d-3l (eq-5d-3l), prosthetic limb users survey of mobility (plus-m), 2-minute walk test (2mwt) and physiologic cost index (pci). data were analysed for change over time. subgroup analysis was performed for amputation aetiology (vascular or non-vascular) and prosthesis use. results: amongst 30 patients, eq-5d, plus-m and 2mwt improved after prosthesis provision (p < 0.001). euroqol-5d increased from 0.48 to 0.85 at 1 year (p < 0.001). euroqol-5d and 2mwt were higher in non-vascular subgroup (p < 0.030). at 1-year, 84% of non-vascular and 44% of vascular subgroups reported using their prosthesis (p = 0.068). conclusion: prosthesis provision to transfemoral amputees in an lmic improved qol and function. this benefit was greater for non-vascular amputation aetiologies. quality of life and function returned to pre-prosthesis levels with discontinued use of prosthesis. keywords: lowand middle-income countries; transfemoral amputation; above-knee prosthesis; quality of life; functional status; tanzania. introduction limb loss is a devastating and debilitating condition that leads to dramatic changes in the lives of amputees. reports from high-income countries (hics) have documented that amputations negatively impact the quality of life (qol ), posing significant physical and psychosocial challenges on amputees (sinha, van den heuvel & arokiasamy 2011). in hics, the most common aetiologies of lower extremity amputation are peripheral vascular disease and diabetes, but in lowand middle-income countries (lmics), the most common aetiologies include trauma, infection, diabetes and malignancy (agu & ojiaku 2016; chalya et al. 2012; gebreslassie, gebreselassie & esayas 2018; grudziak et al. 2017; loro & franceschi 1999; ogeng’o, obimbo & king’ori 2009; thanni & tade 2007). in lmics, traumatic injuries now cause more death and disability than malaria, tuberculosis and hiv combined (james et al. 2018) because of wartime conflicts and the increase in road traffic accidents associated with rapid urbanisation (harkins, mcgarry & buis 2013). concurrently, as populations in lmics age, the impact of non-communicable diseases, such as obesity and diabetes, has grown (hossain, kawar & el nahas 2007). the net effect of this changing health burden in lmics is a growing number of amputees with severe disability and few resources allocated to manage their challenging condition (‘world report on disability’ n.d.). it is estimated that over 29 million individuals in resource-limited environments are in need of orthotic and prosthetic services (harkins et al. 2013). in hics, treatment for limb loss focuses on the physical and psychosocial effects of amputation and usually includes the provision of a prosthesis to improve mobility (wurdeman, stevens & campbell 2017). prosthesis usage is associated with higher levels of employment, higher qol and reduced secondary health issues (pasquina, carvalho & sheehan 2015), although patients with dysvascular amputations report worse function than those with traumatic amputations (amtmann et al. 2015). compared to the robust literature on the impact of limb loss and benefits of prostheses in hics, little has been done in lmics, and much of the hic-produced research is poorly applicable to the lmic environment (aluede et al. 2012; harkins et al. 2013). unique to lmic prosthetic needs is the importance of affordability, durability and repairability (wyss et al. 2015). therefore, the selection of context-appropriate prostheses is critical to achieving the benefits of improved function, aesthetics and productivity associated with qol. whilst some lmic studies describe the aetiologies of lower-extremity amputation and lack of prosthetic and rehabilitation services (agu & ojiaku 2016; chalya et al. 2012; cummings 1996; gebreslassie et al. 2018; grudziak et al. 2017; loro & franceschi 1999; maqsood et al. 2015; ogeng’o et al. 2009; thanni & tade 2007), literature fails to address post-amputation determinants of qol, function or impacts of prosthesis provision. whilst the need for greater access to prosthetic services in lmics is well established (cummings 1996), the actual provision of these services has yet to meet those stated needs because of factors including prohibitive costs to both patients and institutions, lack of trained local prosthetics professionals and poor infrastructure for post-amputation care (harkins et al. 2013; ibrahim et al. 2019; wyss et al. 2015). there remains a gap in the literature demonstrating the magnitude of qol and functional benefits before and after the provision prostheses. studies that further the understanding of the benefits of prostheses in lmics will add needed weight to advocacy efforts for increased access to prosthetic services for amputees. the objective of this study was to measure the impact of prostheses on qol and function in transfemoral (tf) amputees in tanzania. prosthesis provision was hypothesised to improve qol and function in tf amputees. methods we conducted a single-arm pre-post prospective cohort study enrolling tf amputees at muhimbili orthopaedic institute (moi) in dar es salaam, tanzania. study participants all patients presenting to moi prosthetics and orthotics workshop with tf amputation were screened for eligibility between june 2017 and july 2018 (see figure 1a for eligibility criteria). written informed consent was obtained. figure 1: eligibility criteria and schedule of data collection events: (a) the inclusion and exclusion criteria along with rationale used to generate the included cohort of patients and (b) the schedule of which assessments were performed at each timepoint throughout the study. the data collected at 12 months was dependent on whether the visit was conducted in-person or by telephone. sample size the study was powered to detect a difference in euroqol-5d-3l (eq-5d-3l) before and after the provision of a prosthesis. power calculations were performed based on a pilot study of 21 tf amputees (shaw et al. 2018) that reported a change in eq-5d of 0.3 (standard deviation [sd]: 0.25) with prosthesis use. to achieve 90% power and a bonferroni-corrected alpha of 0.0125 for four repeated measurements, the study required at least 10 patients. assuming a loss to follow-up rate of 20%, the minimum enrolment was 13 amputees. intervention all patients received a definitive modular endoskeletal transfemoral prosthesis, which is typical for the region and within the technical capabilities of local providers. the prosthesis included ottobock (germany) socket materials: stockinette, carbon fibre and lamination resin, the legworks (canada) all-terrain knee, ortpar ortopedi (turkey) alignable components and solid ankle cushion heel (sach) foot and local tanzanian supplies: cosmetic foams, stockings and plaster of paris. suspension of the prosthesis was achieved by skin fit suction methods. a silesian belt was added if needed. all components and materials were selected collaboratively with research partners and local providers. prostheses were provided at no cost to study participants, and all fitting and fabrication were performed by certified local prosthetists. gait training was performed by prosthetists during fitting and dynamic alignment, prior to application of the outer cosmetic foam. the quality of prosthetic fit and alignment was assessed via annual site visits by ucsf prosthetists. study timeline participants were assessed at baseline before receiving prostheses and followed for 1 year after fitting at 1, 6 and 12 months. quality of life and functional outcomes, including eq-5d-3l, prosthetic limb users survey of mobility 12-item short form (plus-m), 2-minute walk test (2mwt) and physiologic cost index (pci), were assessed and analysed for change over time (figure 1b). patients who were unable to attend the 12-month follow-up visit in person were contacted by telephone, and only eq-5d and plus-m data were collected. baseline data basic demographic data including age, sex, employment, tobacco and alcohol use and estimated pre-amputation health-related qol (hrqol ) and indication for amputation were obtained at the initial visit. patient-reported outcomes euroqol-5d and plus-m questionnaires were administered to assess hrqol and mobility, respectively. the eq-5d is a five-question validated, standardised, nondisease-specific instrument for describing and valuing hrqol based on five dimensions: mobility, self-care, usual activities, pain or discomfort and anxiety or depression (eds. szende, oppe & devlin 2007). the eq-5d swahili translation, a readily available and validated version, was converted to an index score ranging from −0.145 to 1 using weightings based on data from zimbabwe (eds. szende et al. 2007). the plus-m is a 12-question validated instrument used to measure mobility by assessing respondents’ perceived ability to carry out specific activities that require the use of both lower limbs (‘prosthetic limb users survey of mobility [plus-mtm] version 1.2 short forms users guide’ 2014). prosthetic limb users survey of mobility was translated to swahili using the method recommended by the instrument developer, which included both forwardand back-translation using professional translators. the survey responses were converted to an index score (t-score) ranging from 17.5 to 76.6 using the recommended algorithm (‘prosthetic limb users survey of mobility [plus-mtm] version 1.2 short forms users guide’ 2014). at the initial visit, patients were asked to recall eq-5d and plus-m for the period prior to amputation, (pre-amputation) although these data were not included in statistical analyses to avoid recall bias. the questionnaires were also administered at the following timepoints: at the casting visit before the provision of the prosthesis (pre-prosthesis) and at 1, 6 and 12 month follow-up visits after prosthesis fitting. functional outcomes function was assessed using 2mwt and pci at pre-prosthesis and each subsequent visit. 2-minute walk test and pci are functional metrics to assess patients’ mobility as a function of the distance a patient can ambulate in 2 min, including changes in heart rate (hr) during activity (guirao et al. 2017). patients walked along a corridor marked every 1.5 m, and the total distance ambulated within 2 min was recorded. time was measured using a stopwatch, and distance was measured according to the 1.5 m distance markings, to the nearest meter. heart rate was measured and recorded before and after the 2mwt using an hr monitor (polar ft7, polar electro, kempele, finland). physiologic cost index has been used as a simple, indirect measure of oxygen cost during exercise and is defined as (fredrickson, ruff & daly 2007): all measurements completed prior to prosthesis provision were assessed with patients using only their preferred assistive devices. data collection and statistical analysis data were collected by local research coordinators and certified prosthetists on laptop computers into research electronic data capture (redcap), a secure, web-based software platform designed to support data capture, hosted at ucsf (harris et al. 2009, 2019). amputation characteristics were assessed by prosthetists. baseline patient characteristics and eq-5d, plus-m, 2mwt and pci were collected by trained research coordinators. de-identified data were exported to stata 16.0 for analysis. one-way repeated measures analysis of variance (anova) and post hoc pairwise comparison with bonferroni correction were used for the analysis of continuous outcomes over time. for comparison between amputation etiology subgroups and prosthesis use subgroups, unpaired student’s t-test was used for continuous variables, and fisher’s exact test was used for categorical variables and p-value of 0.05 was used for significance. ethical considerations the study was approved by the ethical review board of the university of california, san francisco (irb#15-15804; ref#244759), holland bloorview kids rehabilitation hospital (reb#16-686) and the national institute for medical research in tanzania (ref. nimr/hq/r.8a/vol. ix/2122). results study population of the 38 tf amputees enrolled, 30 (78.9%) had complete eq-5d data at a minimum of 6 months after prosthesis fitting and were included in final data analysis (figure 2, table 2-a1). the mean age was 46 years (sd: 17.6), the meantime since amputation was 388 days (range 183–803) and the mean estimated eq-5d before amputation was 1.00 (sd: 0.03). at 1 year after fitting, 20 (71%) patients reported using their prosthesis (table 1). figure 2: flowchart demonstrating screening, enrolment and follow-up for study participants. table 1: patient demographic. we assessed the indications for amputation and found that 15 (50.0%) were because of trauma, seven (23.3%) diabetes, four (13.3%) tumour, three (10.0%) vascular disease and one (3.3%) chronic osteomyelitis. patients who received tf amputation for trauma, tumour or infection were significantly younger (38 years, sd: 13.4) than patients who received tf amputation for diabetes or vascular disease (62 years, sd: 13.5; p < 0.01). the trauma, tumour and infection amputees, 20 (66.7%), were categorised as the ‘non-vascular’ subgroup and the diabetes and vascular disease amputees, 10 (33.3%), were categorised as the ‘vascular’ subgroup. there was no difference between the subgroups in estimated pre-amputation eq-5d (p = 0.16). patient-reported outcomes euroqol-5d was higher than pre-prosthesis baseline (0.50) at 1 month (0.84, p < 0.001), 6 months (0.91, p < 0.001) and 12 months (0.86, p < 0.001) after prosthesis fitting (repeated-measures anova, p < 0.001; figure 3a , table 1-a1). at 12 months, -eq-5d was higher in patients who reported using their prostheses (0.96) than for those who reported not using their prostheses (0.60, p < 0.001). at 12 months, eq-5d in the non-vascular subgroup (0.99) was higher than the vascular subgroup (0.85, p < 0.001) (figure 3b, table 1-a1). figure 3: patient-reported outcomes before amputation, at the casting visit before prosthesis fitting, 1, 6 and 12 months after prosthesis fitting: (a) euroqol-5d (eq-5d) health status scores before amputation (pre-amputation), at the casting visit before prosthesis fitting (pre-prosthesis) and at 1 month (1 mo), 6 months (6 mo) and 12 months (12 mo) follow-up after prosthesis fitting; (b) eq-5d health status scores for patients separated by the reason for amputation at pre-amputation, pre-prosthesis, 1 mo, 6 mo and 12 mo for patients reported to be using their prosthesis; (c) prosthetic limb users survey of mobility (plus-m) scores at pre-amputation, pre-prosthesis, 1 mo, 6 mo and 12 mo; (d) plus-m scores for patients separated by the reason for amputation at pre-amputation, pre-prosthesis, 1 mo, 6 mo, and, 12 mo for patients reported to be using their prosthesis. prosthetic limb users survey of mobility was higher than pre-prosthesis baseline (39.94) at 6 months (54.04, p < 0.001) and 12 months (53.71, p < 0.001) after prosthesis fitting (repeated-measures anova, p < 0.001; figure 3c, table 1-a1). at 12 months, plus-m scores were higher for patients who reported using their prosthesis (60.12) than for those who reported not using their prosthesis (38.48, p < 0.001). at 12 months, plus-m for the non-vascular subgroup (62.50) trended higher than for the vascular subgroup (51.2, p = 0.052) (figure 3d, table 1-a1). functional outcomes the distance ambulated, in meters, during the 2mwt increased after prosthesis fitting (repeated-measures anova, p < 0.001), trending higher than pre-prosthesis baseline (68.26) at 6 months after prosthesis fitting (84.87, p = 0.059; figure 4a, table 1-a1). distance ambulated by the non-vascular subgroup was higher than the vascular subgroup at 1 month (66.81, p = 0.018) and 6 months (91.47, p = 0.024) after prosthesis fitting (33.25 and 50.20, respectively) (figure 4b, table 1-a1). figure 4: functional outcomes before amputation, at the casting visit before prosthesis fitting, 1, 6 and 12 months after prosthesis fitting: (a) 2-minute walk test scores at the casting visit before prosthesis fitting (pre-prosthesis) and at 1 month (1 mo), 6 months (6 mo) and 12 months (12 mo) follow-up after prosthesis fitting; (b) 2-minute walk test scores for patients separated by the reason for amputation at pre-prosthesis, 1 mo, 6 mo and 12 mo; (c) physiologic cost index (pci) at pre-prosthesis, 1 mo, 6 mo and 12 mo and (d) pci for patients separated by the reason for amputation at pre-prosthesis, 1 mo, 6 mo and 12 mo. physiologic cost index was never significantly different from pre-prosthesis baseline (repeated-measures anova p = 0.0623; figure 4c, table 1-a1). physiologic cost index was significantly lower in the non-vascular subgroup than in the vascular subgroup at pre-prosthesis baseline (0.90 vs. 2.98, p = 0.011), 1 month (1.03 vs. 5.11, p < 0.001) and 6 months (0.82 vs. 1.53, p = 0.010) after prosthesis fitting (figure 4d, table 1-a1). prosthesis use at 12 months after fitting at 1 and 6 months after fitting, all patients reported using their prosthesis. at 12 months after fitting, 16 (84%) patients in the non-vascular subgroup reported using their prosthesis whilst just four (44%) patients in the vascular subgroup reported using their prosthesis, although this difference did not reach statistical significance (p = 0.068). of the three patients in the non-vascular subgroup who reported not using their prosthesis, two described having fully abandoned their prosthesis, whilst the third expressed interest in resuming use after recovery from an unrelated illness. in contrast, all five patients in the vascular subgroup who reported not using their prosthesis described having fully abandoned the prosthesis. reasons provided for prosthesis abandonment in the vascular subgroup included socket loosening leading to poor fit and contralateral amputation leading to wheelchair use. discussion we prospectively followed 30 tf prosthesis recipients for 1 year after fitting to measure impacts of prostheses on qol and function. we found, as hypothesised, that hrqol and function improved significantly after prosthesis provision. whilst data are limited on impacts of prostheses in lmics, hic studies have reported improvements in qol , mobility and secondary health issues with prosthesis usage in lower limb amputees (pasquina et al. 2015). here, we demonstrate similarly that the provision of a prosthesis improves hrqol , mobility and function in tf amputees in tanzania. the demographics of the cohort captured are consistent with previously documented tanzanian amputee populations (chalya et al. 2012; shaw et al. 2018). our study showed that prosthesis benefits were greater for non-vascular compared to vascular amputation aetiologies. the non-vascular subgroup was found to be younger, likely representing a healthier subset of tf amputees with greater potential to benefit from prosthetic rehabilitation. in contrast, patients with amputations because of diabetes and vascular disease tended to be older with concurrent medical issues, leading to less overall benefit. the findings of these subgroup analyses mirror those reported in hics, where patients with dysvascular amputations were significantly older, with more comorbidities and worse functional status and qol than patients with amputations because of trauma (amtmann et al. 2015). dysvascular lower limb amputees in hics have also been documented to use their prostheses less than amputees with trauma-related amputations (raichle et al. 2008). whilst not statistically significant, our study similarly demonstrated a trend that vascular subgroup tf amputees had a higher rate of prosthesis abandonment. nonetheless, these dysvascular patients still experienced significant improvements in hrqol and function after receiving a prosthesis. when compared to qol benefits of health interventions in other medical fields, our study highlights the magnitude of the impact of amputation and subsequent prosthesis provision on hrqol. our results show that before receiving prostheses, tf amputees have eq-5d scores of 0.48, a score notably worse than eq-5d levels associated with other pathologies, such as 0.64 for chronic obstructive pulmonary disease or 0.51 for cerebral infarction (zhou et al. 2018). to our knowledge, the qol of an amputee without a prosthetic device has not been previously reported, particularly at the transfemoral level. we found the provision of a prosthesis dramatically improved this eq-5d score, with a hrqol increase of 0.37 amongst all patients and 0.58 in the non-vascular subgroup. these improvements are well above previously described minimal clinically important differences for eq-5d of 0.03–0.36 for musculoskeletal disorders and 0.074 for non-disease-specific (coretti, ruggeri & mcnamee 2014). in addition to the significant impacts on qol , the impacts on patient-reported mobility found in this study are supported by similar findings from hics. lower limb prosthesis users in hics reported a plus-m score of 50.3 (hafner et al. 2017), similar to the value (53.71) for prosthesis users 1 year after prosthesis provision measured in this study. there is limited literature available about 2mwt and pci in lower limb amputees, and the existing studies report considerable variability. the few studies of 2mwt in tf amputees in hics report distances ambulated ranging from 40 m (brooks et al. 2001) up to 135 m (gaunaurd et al. 2020), and normative 2mwt reference values for healthy individuals have been reported as 150 m – 217 m (bohannon 2017). our findings of over 80 m ambulated at 6 and 12 months after prosthesis fitting fall within published 2mwt ranges. published pci values of 0.23–0.42 for healthy individuals and 0.57 for tf amputees (vllasolli et al. 2015) are considerably lower than those found in our study. these differences likely stem from methodologic variation as the published studies primarily use five-minute walking tests and report higher walking speeds than found in our study. this study is limited by follow-up duration that represents a relatively short proportion of clinically relevant timeframe in the prosthesis life cycle. whilst clinical improvements in the cohort stabilised by 6 months after prosthesis provision, questions related to known long-term prosthesis concerns in lmics such as durability, structural failure, excessive wear and deterioration because of sunlight and other environmental exposures (wyss et al. 2015) can only be answered after longer periods of observation. an additional limitation is the inability to quantify fit and alignment of the prosthesis or provide adequate longitudinal gait training through the duration of the study. although gait training was done by local prosthetists during prosthesis fitting, participants did not undergo the formalised longitudinal outpatient physical therapy gait training as is the standard of care in hics. standardisation in the fitting process was achieved by providing additional training to local prosthetists, however, the standard of care in lmics does not include standardised assessment of fit, alignment or gait training. this limitation underscores the robustness of the studied intervention in that provision of a prosthesis significantly improved qol and function of amputees even in the absence of the prosthetic adjustments and rehabilitation that would be common in hics. we screened a larger number of patients than were ultimately included in the study because of the inability of some patients to complete the fitting process within the study timeline. even with the provision of a prosthesis at no cost to patients, challenges related to inconsistent availability of locally sourced materials, a limited number of trained providers and the need for patients to travel to the prosthetic workshop for multiple fitting visits contributed to the observed inefficiency of the fitting process in this resource-limited environment. considering the sample size needed to power the study and the limited resources available to extend the timeline of the study, the number of patients ultimately included in the study was considered sufficient. of note, regression analysis was not performed, so results should be interpreted with the understanding that there may be additional factors that contribute to observed improvements in qol and function. as self-reported survey instruments, the eq-5d and plus-m measurements are prone to subjectivity, although both have been extensively validated (hafner et al. 2017; eds. szende et al. 2007). further, as participants were enrolled following amputation, prospective data were not available for pre-amputation baseline, so participants were asked to recall this state. in order to avoid recall bias, these recalled values were provided for reference but were not used in the outcome analysis. the use of the plus-m for amputees without prostheses has not yet been validated, so the values reported pre-prosthesis should be interpreted as such with respect to participants’ self-reported mobility. finally, the generalisability of this study is limited by the use of only one type of prosthesis that may or may not produce results similar to other transfemoral prostheses. the prosthesis used in this study was selected based on the experience of local providers as well as the availability of the components and materials via manufacturer distribution and non-governmental organisation (ngo) programmes. thus, given the clinical improvements we observed, we believe it has the potential to be sustainably implemented broadly in low-resource settings. further, our findings are consistent with the benefits of prosthetics measured in hics (amtmann et al. 2015), which suggests that these results may be broadly applicable. conclusion our findings demonstrate that the provision of a prosthetic device to transfemoral amputees in an lmic improves both hrqol and function. to our knowledge, the magnitude of this impact has never before been quantified in resource-limited settings and will add needed data to advocacy efforts for prosthesis provision in overburdened health systems. additional investigations of long-term outcomes and cost-effectiveness of the observed health benefits are needed to more strongly advocate for universal prosthesis provision in lmics. acknowledgements the authors acknowledge the contributions of leah mamseri, geofrey mwakasungula and the moi orthopaedic workshop and the contributions of the local research coordinators joshua ngahyoma, ibrahim sasillo and justin kessy. the authors also acknowledge the contributions of brandon burke for technical support relating to the prosthetic knee. finally, the authors acknowledge the funder the d. keith macdonald foundation. competing interests j.a. currently serves as chief technology officer of legworks and is the designer of the all-terrain knee. e.l. is a cofounder and current member of the board of directors of legworks and served as founding chief executive officer of legworks from 2014 to 2019. they have disclosed those interests fully and have in place an approved plan for managing any potential conflicts arising from the stated disclosures. authors’ contributions e.p.v.k. contributed to data acquisition, data analysis and interpretation and manuscript preparation and revision. a.h. contributed to the conception and design of the study, data interpretation, critical manuscript revision and topical expertise. c.a.d. contributed to data analysis and interpretation and critical manuscript revision. s.h.a. contributed to data acquisition, data analysis and critical manuscript revision. c.s. contributed to the study design, data interpretation, critical manuscript revision and topical expertise. s.t.c. contributed to the study design, data acquisition and critical manuscript revision. e.l. contributed to the study conception, acquisition of funding and critical manuscript revision. b.t.h. contributed study design, supervision of data acquisition and critical manuscript revision. s.m. contributed to the study conception and design, interpretation of data and critical manuscript revision. j.a. contributed to the study conception and design, data interpretation and analysis, critical manuscript revision and topical expertise. d.w.s. contributed to the study conception and design, data interpretation and analysis, supervision of data acquisition and critical manuscript revision. funding information funding for this study was provided by the d. keith macdonald foundation. the funder provided the study award but had no role in study design, data acquisition, data analysis or manuscript preparation. data availability the authors confirm that the data supporting the findings of this study are available within the article. disclaimer the views expressed in this article are those of the authors and not an official position of the institution or funder. references agu, t.c. & ojiaku, m.e., 2016, ‘the indications for major limb amputations: 8 years retrospective study in a private orthopaedic and trauma centre in the south-east nigeria’, journal of clinical orthopaedics and trauma 7(4), 242–247. https://doi.org/10.1016/j.jcot.2016.03.006 aluede, e.e., phillips, j., bleyer, j., jergesen, h.e. & coughlin, r., 2012, ‘representation of developing countries in orthopaedic journals: a survey of four influential orthopaedic journals’, clinical orthopaedics and related research 470(8), 2313–2318. 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(eds.), 2007, eq-5d value sets: inventory, comparative review and user guide, springer netherlands (euroqol group monographs), dordrecht. https://doi.org/10.1007/1-4020-5511-0 thanni, l.o.a. & tade, a.o., 2007, ‘extremity amputation in nigeria – a review of indications and mortality’, the surgeon: journal of the royal colleges of surgeons of edinburgh and ireland 5(4), 213–217. https://doi.org/10.1016/s1479-666x(07)80006-0 vllasolli, t.o., orovcanec, n., zafirova, b., krasniqi, b., murtezani, a., krasniqi, v. et al., 2015, ‘physiological cost index and comfort walking speed in two level lower limb amputees having no vascular disease’, acta informatica medica 23(1), 12–17. https://doi.org/10.5455/aim.2015.23.12-17 world health organization (who), n.d., world report on disability 2011, p. 350, world health organization, geneva. wurdeman, s.r., stevens, p.m. & campbell, j.h., 2017, ‘mobility analysis of amputees (maat i): quality of life and satisfaction are strongly related to mobility for patients with a lower limb prosthesis’, prosthetics and orthotics international, viewed 04 february 2020, from https://journals.sagepub.com/doi/10.1177/0309364617736089. wyss, d., lindsay, s., cleghorn, w.l. & andrysek, j., 2015, ‘priorities in lower limb prosthetic service delivery based on an international survey of prosthetists in lowand high-income countries’, prosthetics and orthotics international 39(2), 102–111. https://doi.org/10.1177/0309364613513824 zhou, t., guan, h., yao, j., xiong, x. & ma, a., 2018, ‘the quality of life in chinese population with chronic non-communicable diseases according to eq-5d-3l: a systematic review’, quality of life research: an international journal of quality of life aspects of treatment, care and rehabilitation 27(11), 2799–2814. https://doi.org/10.1007/s11136-018-1928-y appendix 1 table 1-a1: patient-reported outcomes of health-related quality of life and mobility before amputation (pre-amputation), at the casting visit before prosthesis fitting (pre-prosthesis) and at 1 month (1 mo), 6 months (6 mo) and 12 months (12 mo) follow-up after prosthesis fitting. table 2-a1: data information for 12-month follow-up. abstract introduction methods findings discussion conclusion acknowledgements references footnotes about the author(s) marlene le roux inclusive practices africa, department of health and rehabilitation sciences, university of cape town, cape town, south africa division of disability studies, department of health and rehabilitation sciences, university of cape town, cape town, south africa harsha kathard inclusive practices africa, department of health and rehabilitation sciences, university of cape town, cape town, south africa division of communication sciences and disorders, department of health and rehabilitation sciences, university of cape town, cape town, south africa theresa lorenzo department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation le roux, m., kathard, h. & lorenzo, t., 2021, ‘creating inclusive performing arts practices for development of youth with disabilities: a critical ethnographic study’, african journal of disability 10(0), a753. https://doi.org/10.4102/ajod.v10i0.753 original research creating inclusive performing arts practices for development of youth with disabilities: a critical ethnographic study marlene le roux, harsha kathard, theresa lorenzo received: 30 apr. 2020; accepted: 30 apr. 2021; published: 30 june 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: youth with disabilities are a marginalised group in society. this marginalisation traps them and prevents their full participation in social and economic development. objective: this study sought to understand how exposure to the performing arts facilitates the inclusion of youth with disabilities. methods: the study adopted a qualitative research approach, utilising critical ethnography. primary data consisted of three focus group discussions with youth with disabilities, and an in-depth interview with a performer with disability. thematic data analysis was conducted. results: four themes emerged. theme 1, blown away, shares the experiences of youth who attended artscape theatre. theme 2, i can do it, you can do it, describes their career aspirations. theme 3, embracing hope, identifies the social and life skills learned through visited artscape. theme 4, long way to go, presents the factors that influence the participation of youth with disabilities in the performing arts. while their experiences are diverse, and their impairments are unique, contact with the performing arts supported social and economic inclusion, and triggered empowerment of youth with disabilities. insufficient accessible and available transportation is the most notable barrier to accessing development opportunities. conclusion: exposure to the performing arts provides important skills development and social opportunities for disabled youth. it is up to the ‘keepers’ of the performing arts – those in administration and management – to realign the performing arts in a way that can best benefit everyone. keywords: performing arts; social inclusion; livelihoods; community-based rehabilitation; inclusive development; disability; youth development. introduction the artscape theatre centre in the western cape province of south africa has an active audience development and education department housed in the inclusive arts unit (iau). the objective of the iau is to use the performing arts as a vehicle to facilitate social transformation and build bridges across the divides, which separate communities, and to enable new potential audiences to access the theatre and the performing arts. a further aim was to nurture future generations of patrons through school and youth programmes, offering them opportunities to participate in productions and training. it is important to acknowledge that artscape stands as a symbol of south africa’s apartheid legacy as it was originally designated as a space for white people only. the iau aims to undo the wrongs of the past by transforming artscape into a place of hope and a home for artists and patrons of all backgrounds. this transformation includes artists and patrons with disabilities. historically, arts in south africa have been used to give a voice to the voiceless. an example of this intention is the many underground ‘struggle plays’, which were written during the apartheid era. the lead author of this article also attests to the positive influence of involvement in the performing arts as a black woman with disability who grew up in a disadvantaged, rural community during apartheid. she describes her involvement in youth choirs as an experience of finding her voice. this experience boosted her confidence and helped to socialise her into society without the usual struggle and prejudice, which many persons with disabilities face. opportunities to participate in the performing arts also assisted in enhancing her world views and reducing her fears and anxieties, thus making the outside world a more liveable place for her. her involvement in performing arts enabled her to build relationships and helped her to make sense of both her disability and her unique abilities. this sense-making and relationship building may not be easy for youth with disabilities who continue to face complex challenges.1 max-neef (2009), a chilean economist, has pointed out that development is about people, not objects; in other words, it is people centred. he identified nine fundamental human needs, namely, subsistence as priority, identity, affection, protection, creation, understanding, participation, freedom and idleness. these needs are non-hierarchical and inter-related, and are the same in all cultures and across historical periods. any of these needs that are unmet may lead to deprivation, but they become a resource in themselves. for youth with disabilities, adequate care, medical equipment and rehabilitation, accessible buildings and transport, as well as emotional support are single or synergistic satisfiers of human needs for social and economic development (lorenzo et al. 2018). in addition, youth with disabilities need access to adequate education and services in order to develop intellectually (moyne 2012; oliver & sapey 2006). as one of the most marginalised groups in the society, their rights to economic opportunity and social development need to be vigorously protected through national policies and actively implemented in the local context. confronting human poverties through the maximisation of local resources and social spaces can facilitate friendships and networks that provide opportunities for relationship building, so that a person who is different from you can be seen as equal. this study focuses on the experiences of youth with disabilities of accessing the performing arts and explores the ways in which exposure to the performing arts creates opportunities for social and economic inclusion. art influences the society by changing opinions, instilling values and translating experiences across space and time. art can have an impact on an individual’s sense of self. the disability arts movement empowers persons with disabilities to claim the right to be ‘equal but different’, as expressed in the affirmative model of disability (swain & french 2000). this movement, which was initiated by activists, artists and creatives in the late 1970s, campaigned for the civil rights of people with disabilities and fought against their marginalisation in arts and culture. stöckl (2015:42) concluded that the disability arts movement ‘emphasises the pride that disabled people feel: a pride that is sometimes lacking because of the social stigma that still prevails’. the affirmative model of disability was suggested by swain and french (2000), who advocated for a: [n]on-tragic view of disability and impairment which encompasses positive social identities, both individual and collective … grounded in the benefits of lifestyle and life experience of being impaired and disabled. (p. 569) they further argued that the performing arts open up a space for expression and, at the same time, the creation of images of pride and strength, in contrast to ideas of helplessness and dependency. the performing arts is an integral part of culture, any culture, and remains a stalwart of change. methods this study explored how the youth with disabilities who were exposed to theatre performances, through visiting the theatre or attending a theatre workshop, were influenced in terms of becoming aware of possibilities for social and economic inclusion. a qualitative research approach was adopted using a critical ethnographic approach as a research design. critical ethnography investigates the culture, community and everyday circumstances of participants – what is and what could be (thomas 1993). it involves seeking to uncover not only sociocultural knowledge about a group but also patterns of social injustice. the apartheid system in south africa left many deep scars. there is a need to explore the role it played with regard to the social exclusion and marginalisation of specific communities, especially black youth with disabilities. boylorn and orbe (2014:15) asserted that critical ethnographers are interested in the ‘politics of positionality’, where researchers expose their own privileges, in addition to marginalisation, and ‘take responsibility for [their] subjective lenses through reflexivity’. as a researcher with a disability, the lead author of this study favoured critical ethnography as a means to address the past practices of discrimination and bias, and to develop new strategies to support the socio-economic inclusion of youth with disabilities. in her earlier role as development coordinator in iau, the lead author worked closely with disadvantaged persons. additionally, in her book entitled look at me (le roux 2008), she collaborated with 25 other south african women with disabilities, documenting their personal experiences, perspectives and aspirations. through the use of critical ethnographic approach, including the lead author’s proximity to youth with disabilities and to the theatre, as well as her positionality as a researcher with disability, she was able to critically analyse the experiences of youth with disabilities attending performances at the artscape theatre centre. sampling and participants participants in this study were recruited from poor, disadvantaged, black and coloured2 communities in the western cape province, south africa. these communities continue to be impacted in the aftermath of apartheid as evident in inadequate resources, a lack of affordable and accessible transport, poor service delivery and spatial inequality (le roux 2018; lorenzo 2008). the study involved three focus group discussions. group 1 included six learners from a tertiary training college for the deaf who attended a production of an afrikaans set work3 (see table 1). group 2 included seven grade 12 learners from a high school for the deaf who attended the same production (see table 2). these two institutions deal with similar challenges and opportunities related to disability inclusion, and to providing skills and education to these young learners with disabilities. group 3 included six audience members with a disability who attended an event at artscape (see table 3). in addition, an in-depth interview was conducted with a female dancer with disability to gain insights into her experiences of exposure to performing arts. a purposive sampling strategy was used to select participants. table 1: participant group 1: tertiary training college for the deaf. table 2: participant group 2: secondary high school for the deaf. table 3: participant group 3: artscape youth group. participants were youth, that is, their ages ranged from 18 to 35 years, as defined by south africa’s youth commission act of 1996. they self-identified as male or female; had self-described sensory, mobility, mental or psychosocial disabilities; and were willing to share their experiences. participants were from bilingual backgrounds with english as one of their languages. participant information is summarised in tables 1–3. the names provided in the table are pseudonyms that were used to protect the privacy of the participants. data gathering methods and data analysis the primary data gathering method involved three focus group discussions youth with disabilities, an in-depth interview with a performer with disability and reflective journaling by the researcher. the use of focus group discussions as a data gathering tool was an effective way for investigating the limiting factors affecting the youth with disabilities. a focus group is a relatively small gathering of individuals who assemble in one location to discuss topics specified by a researcher (smithson 2000). the focus group format effectively prompts discussion between participants, potentially generating a diverse blend of perspectives and suggestions (marshall & rossman 2006). the focus groups centred on the participants’ experiences of attending a performance, event or workshop at artscape. in addition, the focus groups explored participants’ views regarding the influence of the performing arts on their social and economic inclusion. although the researcher intended to recruit participants from diverse race, gender and impairment backgrounds for the focus groups, this was not logistically feasible. therefore, each focus group comprised participants who were from the same institution. the in-depth qualitative interview with the performer with disability explored her experiences of inclusion in the performing arts as a marginalised performer. as a critical ethnographer, the lead researcher used reflective journaling as a means to be self-reflexive through the research process. she documented her positionality, thoughts, emotions, critical incidents and learnings to strengthen the data collection and analysis process. data analysis began with the transcription of all digitally recorded data. creswell (2007) suggested that in reading through data and gaining familiarity, one can start the process of understanding it. thematic analysis, as described by bowen (2009) and braun and clarke (2006), was used to identify recurring themes and patterns in the focus group interactions, specifically focusing on a critical ethnographic concern with patterns of social injustice. braun and clarke (2006:78) viewed thematic analysis as a flexible tool for research, ‘which can potentially provide a rich and detailed, yet complex, account of data’. thematic analysis enables researchers to make sense of data in accordance with their specific interests and within a broader methodological framework (braun & clarke 2006). the researcher established a manual coding system to effectively categorise responses (bowen 2009; braun & clarke 2006). any additional comments were included as a means to contextualise focus group transcripts. review and constant comparison enabled the researcher to place codes into categories and subcategories, and the verification of themes and categories was carried out up to the point where saturation was reached. pseudonyms were used to identify participants and their responses, ensuring that confidentiality and privacy were not compromised. this research study adhered to lincoln and guba’s (1985) strategies of credibility as the author carried out member-checking with the participants. transferability was achieved through providing thick description of the context of the study participants. the researcher improved the dependability of the study by maintaining an audit trial of the research process and analysis. the researcher engaged in critical dialogue with her peers with disabilities and her supervisors to assist with confirming her analysis. the researcher ensured that the participants were informed of all the potential benefits and hazards of the study. findings the following four themes related to disability inclusive development emerged from the data: theme 1: ‘blown away’ reflects the amazement experienced by youth when they see a performance for the first time. theme 2: ‘i can do it; you can do it’ describes the career aspirations of youth with disabilities. theme 3: ‘embracing hope’ explores the social and life skills learned through exposure to the performing arts. theme 4: ‘long way to go’ outlines the factors that influence the participation of youth with disabilities in the performing arts. theme 1: blown away the first theme is blown away (samantha, interview, march 2017), which describes the experiences of youth with disabilities who attended a performance or an event at artscape. for the majority of the participants, regardless of whether it was their first visit to the artscape theatre centre, the mere fact of attending an event was an overwhelming experience that evoked numerous feelings: ‘when i entered artscape it was unbelievable for me to see how they were acting, how the characters were portrayed. i could fit into what was happening because there was an interpreter and so i could understand everything. also, with the changing of the lights i could feel it and be part of it. it was like being in a 4d movie.’ (howard, group 2, march 2017) the participants from groups 1 and 2 were truly astonished after attending a performance of a set work at the artscape theatre centre. they were able to understand what was unfolding and what the actors were actually saying as a sign language interpreter was present on the stage during the performance: ‘the best part was that there was an interpreter for all [deaf persons attending], that could contribute to helping all who attended understand the set work’ (nathan, group 2, march 2017). non-formal education through attending an event or performance allows for youth with disabilities to engage with others and learn new skills and abilities through participative interaction: ‘it’s a very fun and exciting space to be in because you interact with different people and you always leave with new friends’ (chidera, group 3, march 2017). additionally, the performance was educational: ‘you can always learn something new from every production. each production has a theme and that theme always provokes different emotions and ideas. it can either be something personal or something that’s out there, but you always leave with something that speaks to something else.’ (yinka, group 3, march 2017) the performance of a set work also acted as an assistive educational aid for educational institutions as learners are exposed to performances that portray texts that they are studying as part of their curriculum: ‘it is an extremely wonderful experience to take learners to artscape, especially when it’s to my advantage because it addressed work we need to do in class. so, it really is very valuable, to see something in writing and then be able to see it being performed.’ (educator, group 2, march 2017) performing arts offer a space for lifelong learning as one leaves each performance and event having learnt something. arts education is vital to ensure holistic development as it enhances an understanding of the world, exposing individuals to different views, the many personalities that make up the world, the many faces, forms, shapes and colours. this can show youth with disabilities that they are not alone and help them to make sense of their own abilities. theme 2: i can do it, you can do it this quote (brandon, group 1, 2017:21) reflects the second theme, which addresses how being at artscape may influence the career aspirations of youth with disabilities. there were two sub-themes, namely, ‘[c]reative possibilities and opportunities’ and ‘[i]nspired’. through exposure to new things outside of what they are normally used to, youth with disabilities are able to build not only their confidence but also resilience as they are encouraged to explore and discover their own unique personal abilities. one of the participants spoke very openly about how, if opportunities were not available, one should go out and create them. she mentioned how after an existing organisation she had joined closed down, she realised the need to form a new organisation for youth with disabilities, a place where they could come together and share experiences, network around possible employment opportunities and engage socially. prompted by this realisation, she went out and registered her own organisation and had the following to share with the group: ‘they need to face the challenges that’s out there. accepting the fact that you are disabled, you can’t go there, and you can’t do this because of all these stumbling blocks. it’s not gonna help, it’s just keeping you back. so, if we force our way in masses then that’s how we gonna change people’s mindsets, in living our lives the way we want to.’ (chidera, group 3, 2017:10) inspiring emerged as a category that revealed how youth took courage in pursuing their career dreams. performing arts creates opportunities for engagement and interaction that were inspirational and empowering on many levels. these contribute to the process of developing self-determination. many of the participants in group 3 already had employment. their main concern was how to retain employment in a career that they were passionate about, and which was economically viable. all of these young people came from disadvantaged areas in cape town and had careers within performing arts. some participants were unemployed, and they participated in informal arts-related activities in their communities: ‘i’m a singer by nature but the acting and everything i did with my friends in khayelitsha4’ (tariro, group 3, march 2017). theme 3: embracing hope this emerged as the third theme, which addressed the manner in which social and life skills are learnt by attending a performance or visiting the artscape theatre centre. two sub-themes, namely, connecting socially and gaining self-mastery, were identified. for all participants, social cohesion in a disability context meant being able to be like any young adult or teenager – to go out and enjoy life with their peers. coming to artscape was a whole new experience: ‘they think that is life and then when they come to the theatre it’s a whole new experience for them, it’s exciting, it’s a different experience, it’s something that they [have] never seen or experienced before. so, by creating opportunities like these for young people, i think it does start changing the way we live and our societies. it starts giving young people hope and it makes them realise that they have the skills, they have the tools but it’s just a matter of working on them and realising that “i am worthy” and “i can do anything i want” and then “where to from here”.’ (samantha, interview, march 2017) samantha expressed how attending an event or performance instilled a feeling in youth with disabilities that they could be part of the bigger world. they could see themselves enjoying an experience at the same event and venue as any other person. this finding suggests the importance of access to recreation as part of inclusive development. an inclusive development practice approach advocates for the artscape theatre centre, and other spaces of engagement, to develop systems that recognise a caregiver or personal assistant as integral to accessibility for the person with disability. for example, when purchasing tickets to an event, the caregiver needs to be allowed to enter free of charge. being amongst peers and with people without disabilities created a sense of belonging in youth with disabilities, and developed their confidence to branch out, disrupting the stereotyping and exclusion of people with disabilities. youth with disabilities develop confidence and self-esteem to overcome the fear and anxieties associated with life in a non-disabled world through interactive spaces. chidera commented: ‘for me, it’s a very fun and exciting space to be in because you interact with different people and you always leave with new friends’ (chidera, group 3. 2017:12). in order for a young person to be included and to contribute to the economy of life, they need support to take ownership of their circumstances, which enables them to make life choices (galvaan 2010). social participation, positive identity, life skills and creativity offered through exposure to the performing arts contribute to greater progress in the social and economic inclusion of youth, especially youth with disabilities. most of the participants clearly described how opportunities to interact socially have positively influenced their identity: ‘when i got involved with performing arts, meeting new people on a daily basis, working with different people all the time, i’ve become more confident and i’ve learnt that there’s more to life than just one way of doing things.’ (nonzuzu, group 3, 2017:15) through connecting socially within the interactive spaces provided by attending an event, youth with disabilities are given the opportunity to experience something new, whilst also learning and developing new skill sets that are vital for enhancing their chances for different forms of employment. opening up an exciting space for them to form new friendships and lasting networks could also potentially lead to avenues in exploring employment opportunities. theme 4: a long way to go exposure to the performing arts has clear benefits for youth with disabilities. in contrast, this fourth theme identifies the social and environmental factors that influence the participation of youth with a disability in the performing arts. one of the sub-themes, freedom to travel, was identified as essential to people-centred development. without accessible and flexible transport systems, youth with disabilities are not fully able to participate and engage in the society. difficulties in accessing public and private transport systems exclude youth with disabilities from the freedom of attending a performance and the opportunity to engage with others outside of restricted timeframes. public transport was a frequent issue raised in the focus group discussions and the in-depth interview. in order for youth with disabilities to be able to do anything – interact with society and environments, and have access to work or entertainment – transport plays a crucial role. samantha shared a story of an acquaintance as an example of just how challenging it was to make use of public transport for a person with a disability: ‘there was a boy in a wheelchair who lives in khayelitsha and he used a taxi one day to come to artscape, and he arrived two hours late. we asked him what the experience was like for him and he said that he had to wait for two hours to get into the taxi because, first of all, there was no one who was willing to help him. he had to wait until someone came along who was actually willing to assist him out of his wheelchair and into the taxi, and then having to pay another seat in the taxi. so ja, i think we still have a long way to go with public transport.’ (samantha, interview, 2017:3) youth with disabilities regularly require assistance from friends, family members and caregivers to travel on public transport, and often have to endure added challenges in the form of extra costs to be able to make use of different modes of transport. the participants in group 3 also expressed how difficult it was to access public transport routes within their communities. this is an issue directly linked to the apartheid legacy. they often require assistance as these public transport routes are frequently difficult, even impossible, to use, particularly because of the fact that their assistive devices (such as wheelchairs) do not allow them to easily manoeuvre within the built environment: ‘[t]he challenge is i can’t go alone to take the transport because of the roads and it’s also not wheelchair-friendly for me to be able to travel alone’ (chidera, group 3, 2017:19). some of the participants from the same focus group mentioned that the dial-a-ride taxi service, which specialises in offering transport to people with disabilities, is an extremely unreliable mode of transport: ‘my mode of transport is dial-a-ride, which means that i have to always have bookings in advance. so, if i want to go somewhere it has to be seven days in advance for me to make the booking. so, if there comes up an event tomorrow, i can’t attend because i haven’t made prior bookings to go to the event.’ (dylan, group 3, 2017:19) participants also pointed out that the operating hours of public transport systems in their areas were often not convenient, making it difficult for them to access opportunities, such as social functions and performances at the artscape theatre, which are often held in the evening. private transport revealed a different dimension to the transport issue. for the participants from groups 1 and 2, access to transport for attending social events at the artscape theatre centre and elsewhere was not problematic. these institutions have full-fledged transport systems to accommodate their learners within their secured learning environment structures. youth who attend special schools enjoy, for the limited years of their schooling, the conveniences of established infrastructure and accessible transport, as well as organised opportunities for development. we must consider what happens once they left the school, as the infrastructure and opportunities are no longer available to them. unfortunately, this translates into people with disabilities taking steps back instead of forward as these individuals no longer have facilitated access to theatres and other social spaces. access to privately owned modes of transport posed a problem for some of the participants, especially the black and coloured learners, whilst the majority of the white learners easily accessed privately owned modes of transport: ‘[c]urrently we are busy building up my own car, so that i will be able to drive here on my own next semester’ (koos, group 2, 2017). in this study, the continuous impact of the apartheid legacy is clearly visible, specifically linked to the issue of freedom of movement and access to spaces. discussion in this study, a critical ethnographic approach enabled the exploration of the specific experiences of youth with disabilities accessing the artscape theatre centre. it explored the efforts on the part of this post-apartheid institution to become a responsive and inclusive performing arts centre for patrons with disabilities. it also allowed for reflection on past injustices, and the manner in which persons with disabilities continue to be impacted by the apartheid legacy. whilst the experiences of youth with disabilities are diverse, and their impairments are unique, contact with the performing arts supported social and economic inclusion and triggered their empowerment. unfortunately, youth with disabilities, especially those further disadvantaged by the legacy of apartheid, experience barriers to accessing these opportunities, most notably insufficient transportation. education is a basic human right. an inclusive development practice approach to disability attempts to do away with attitudinal, physical and communication barriers by suggesting that the acquisition of knowledge is based on not only the numeric and literacy competence but also visual and artistic competences. similarly, in advocating for an inclusive approach that embraces disability, rehabilitation services should not focus exclusively on issues of health, but it needs to embrace social and arts interactions as well as political and economic inclusion. importantly, inclusion is more than integration, as it involves bringing previously neglected and under-represented persons into a participatory role and the decision-making process, effectively ensuring their ownership in the process and its results. this approach to inclusion enables people to find ways to build bridges together so that barriers to participation related to attitudes, the natural environment, services and systems, support structures, and products and technology (who 2001) are removed. these environmental factors are synergistic satisfiers of human needs (max-neef 2009). where they are not provided, the participation of youth with disabilities in the performing arts is limited, thus leading to deprivation and human poverties. the findings also reveal that emotional support is vital. it allows for a care-based ethic to develop where sharing can occur based on the notion of interdependence and connectedness (kittay 2011). it is not only the environment that needs to be conducive to participation by youth with disabilities but also the need for care has to be acknowledged. it is care that has potential to build the resilience of youth with disabilities. the lead author has developed a concept of inclusion as a ‘laslappies kombers’, which is an afrikaans term. it describes the multi-coloured blankets made from cut material (patchwork quilt) by the women in her rural town, wellington, in the western cape province of south africa. it is a term the lead author developed to expand the understanding of intersectionality in the disability inclusion workshops that she facilitates. it is a construct of interwoven identities, which makes up the fabric of society (le roux 2018). the blanket’s fabric is strong, beautiful and useful when it includes everyone. inclusion is a process of weaving together the fabric that makes up society, recognising the value of each thread. such an inclusive approach may provide a platform where youth both with and without disabilities get to know one another, where diversity is embraced and social anxieties are reduced. inclusion must be person centred, thus enabling persons with disabilities to resist social stereotypes, confront their fears, build a positive identity with creativity and curiosity, acquire skills and confidence, and experience social participation. such processes pave the way to greater social, political and economic inclusion. this approach is important for advancing south africa’s democracy. as the lead author states: ‘we were all brutalised by apartheid and colonisation – so we must all find a new way together. each of us has a story to tell, and in our story whether of being victim or perpetrator, we can both make sense of ourselves and with each other. we need to draw on our collective wisdom in africa to honour our humanity. we all need to find a way through which we can build inclusivity in our homes, communities, schools, universities and workplaces. we cannot isolate disability as a separate issue and think we are inclusive. we need a nuanced approach. there are so many ancestries across the world. we speak from our place and being in africa.’ (pers. comm., le roux 2018) in her thesis, she has also expanded on an african inclusive model of disability, which reflects the unique diversity of the languages, race, gender and cultures that persons with disabilities come from (le roux 2018). in south africa, there is a backlog when it comes to storytelling, whose stories are being told and by whom. we need to see the performing arts in the bigger picture of life and consider what exposure to the performing arts can do for a person, whether as a consumer or as a storyteller. we need to change the archaic narrative that performing arts is only for an elite group of people. in her role within the performing arts in south africa, the lead author has formulated strategies for providing universal access to the performing arts. in exploring the barriers to participation faced by youth with disabilities, she questions the pillars of authority that support the status quo and expresses the hope of moving beyond the current practices to inclusive practices (galvaan 2010; noblit, flores & murillo 2004). conclusion this study concludes that youth with disabilities experience benefits from being included in the performing arts. it also draws attention to how systemic exclusion occurs through the combined effects of social, economic, educational, institutional and political systems. inclusion is challenged in multiple ways. youth, particularly from disadvantaged communities, are trapped in their schools through poor curricula, as well as have limited access to resources and friendships to help them socially. they remain on the margins and are isolated through persistent apartheid-era design and practices. at a personal level, they become disempowered and urgently need a stepping stone through which to become engaged in society. however, the study reveals how changes can be effected by key actors in the performing arts, communities and youth with disabilities themselves to create opportunities, which facilitate social and economic inclusion. exposure to the performing arts can provide essential skills development and social opportunities for youth with disabilities. it is up to the ‘keepers’ of the performing arts – those in arts administration and management – to realign the performing arts in a way that can best benefit everyone. inclusion as an aspirational value can be imagined as a ‘laslappie kombers’, which represents the interwoven identities of individuals who make up the fabric of society. society will be strong, beautiful and useful when it recognises and values everyone that creates a cohesive society. in offering this view of inclusion, which values community connectedness, we provide a means to inspire authentic ways of engaging with disability inclusion. this view may have resonance in contexts where people experience oppression and marginalisation. study implications finally, based on the research presented, this article makes the following recommendations: promote flexible, affordable and accessible transport to enable youth with disabilities to participate in events, such as those in the performing arts. encourage special needs schools to liaise with mainstream schools to work on projects together, especially in the performing arts or by attending each other’s social and educational events. integrate performing arts studies into an inclusive teaching and learning training curriculum at special schools. adopt inclusive practices at performing arts institutions to practically facilitate the safe inclusion of youth with disabilities. this inclusion needs to ensure safe access, providing staff training on inclusion of persons with different types of impairments and fostering a culture of inclusion within the institution. acknowledgements this research study is based on the mphil thesis of the lead author (m.l.r.)., ‘there’s a place for people with disabilities within the performing arts: exploring how interaction with the performing arts may facilitate the social and economic inclusion of youth with disabilities’, unpublished mphil in disability studies, faculty of health sciences, university of cape town, available here: http://hdl.handle.net/11427/29276. we appreciate the critical comments of the reviewers that helped sharpen the focus of this article. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.l.r. completed the research for her mphil in disability studies. she reviewed the first draft prepared by t.l. and contributed to subsequent reviews based on the reviewers’ comments. h.k. and t.l. were supervisors of m.l.r., who contributed to the writing up of this article from her thesis and responded to reviewers’ comments. ethical considerations ethical approval to conduct the study was obtained from the human research ethics committee of the faculty of health sciences, university of cape town (clearance number: hrec 6001/2016). funding information this study was financially supported by a national research foundation scholarship for the lead author. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references bowen, a., 2009, ‘document analysis as qualitative research method’, qualitative research journal 9(2), 27–40. https://doi.org/10.3316/qrj0902027 boylorn, r. & orbe, m., 2014, critical autoethnography: intersecting cultural identities in everyday life, taylor and francis, london. braun, v. & clarke, v., 2006, ‘using thematic analysis in psychology’, qualitative research in psychology 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa creswell, j.w., 2007, qualitative inquiry and research design: choosing among five approaches, 2nd edn., sage, thousand oaks, ca. galvaan, r., 2010, ‘a critical ethnography of young adolescents’ occupational choices in a community in post-apartheid south africa’, phd dissertation, university of cape town (uct), cape town. kittay, e., 2011, ‘the ethics of care, dependence and disability’, ratio juris 24(1), 49–58. https://doi.org/10.1111/j.1467-9337.2010.00473.x le roux, m., 2008, look at me, genugtig publishers, cape town. le roux, m., 2018, ‘there is a place in the sun for people with disabilities within the arts: exploring how interaction with the performing arts may facilitate the social and economic inclusion of youth with disabilities’, unpublished mphil in disability studies thesis, faculty of health sciences, university of cape town, cape town. lincoln, y. & guba, e., 1985, naturalistic inquiry, sage, los angeles, ca. lorenzo, t., 2008, ‘“we are also travellers”: an action story about disabled women mobilising for an accessible public transport system in khayelitsha and nyanga, cape metropole, south africa’, south african 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palgrave macmillan, london. smithson, j., 2000, ‘using and analysing focus groups: limitations and possibilities’, international journal of social research methodology 3(2), 103–119. https://doi.org/10.1080/136455700405172 stockl, a., 2015, ‘common humanity and shared destinies: looking at the disability arts movement from an anthropological perspective’, anthropology in action 21(1), 36–43. https://doi.org/10.3167/aia.2014.210107 swain, j. & french, s., 2000, ‘towards an affirmative model of disability’, disability and society 15(4), 569–582. https://doi.org/10.1080/09687590050058189 thomas, j., 1993, doing critical ethnography, sage, los angeles, ca. world health organization (who), 2001, international classification of functioning, disability and health, world health assembly 54.21, viewed 02 june 2021, from https://unstats.un.org/unsd/disability/pdfs/ac.81-b4.pdf. united nations (un), 2006, convention on the rights of persons with disabilities, united nations, new york, viewed 02 june 2021, from https://www.un.org/disabilities/documents/convention/convention_accessible_pdf.pdf. footnotes 1. for the purposes of this study, the un convention on the rights of persons with disabilities’ definition of disability will be used. persons with disabilities include those who have … equal basis with others (un, 2006). 2. ‘coloured’ is a term used in south africa to refer to individuals of mixed parentage. whilst it was a racial category imposed under the apartheid regime, it remains used in positive terms – denoting a particular identity and referring to aspects of culture. 3. referring to a piece of literature studied as part of the language curriculum. 4. khayelitsha is referred to as a ‘township’ on the outskirts of the city of cape town. originally designated as an area for black persons during apartheid, it remains an area of extreme poverty, facing a lack of service delivery and infrastructure, large-scale unemployment and crime. page 1 of 1 reviewer acknowledgement http://www.ajod.org open access read online: scan this qr code with your smart phone or mobile device to read online. acknowledgement to reviewers in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on https://ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website and register as a user. in order to be considered, please email submissions@ajod.org indicating your intention to register as a reviewer for the journal. to access your details on the website, you will need to follow these steps: 1. log into the online journal at https://ajod.org 2. in your ‘user home’ [https://ajod.org/index. php/ajod/user] select ‘edit my profile’ under the heading ‘my account’ and insert all relevant details, bio statement 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recognise the following reviewers for their precious time and dedication, regardless of whether the papers they reviewed were finally published. we apologise for any names that have been inadvertently left out. these individuals provided their services to the journal as a reviewer from 01 october 2021 to 30 september 2022. adele ebrahim albert m. warnick alida de beer amani karisa anthony g. stacey anwynne kern armand bam arne h. eide auwal abdullahi bhekuzulu z. khumalo bianca birdsey bojan jorgic callista k. kahonde carme c. guerrero carmelita jacobs charles ngwena charles k. hammond charlotte capri chioma o. ohajunwa chrisma pretorius clare harvey dane h. isaacs daniel o. ashipala daphney mawila desire chiwandire dominique brand efua e. mantey eleanor ross elijah musenyente elizabeth i. smit ensa johnson eugene nizeyimana frances e. owusu-ansah gabrielle g. kelly gubela mji guy w. mcilroy hala a.e. sabah harold g. shangali hester m. van biljon hisayo katsui hyleen mariaye indumathi rao james r. aniyamuzaala janet m. wickenden jenna-lee procter joanne neille johan borg jonathan j. makuwira josh tolbert julia biermann kate a. sherry khameer kidia khetsiwe p. masuku kofi nseibo lana van niekerk lientjie van rensburg lisbet grut lizahn g. cloete lonwabo l. godlwana louise frenkel lucia a. hess-april luphiwo l. mduzana madoda p. cekiso madri engelbrecht magdalene simalalo makomborero a. bowa mapheyeledi motimele marcia lyner-cleophas margaret m. wazakili marguerite schneider maria berghs marie-lyne grenier mark harniss martha geiger martin musengi mary g. clasquin-johnson maryke geldenhuys maximus m. sefotho maxwell p. opoku md mahmudul hasan meghan s. white michal harty michelle botha minerva rivas verlade mpilo booi nadia marie de la v. souchon nicola a. plastow nicola m. deghaye nicole de wet-billings nosipho makhakhe ntsikelelo pefile nurul h. rofiah okechukwu v. nwokorie olufemi o. oyewole patricia lund paula sterkenburg peter ndaa phoebe runciman pierre damien turikumana rabbi abu-sadat rachel gartz ramesh poluru ronelle hewetson rose richards rosemary chimbala-kalenga rosemary j. luger roy mcconkey rugare j. mugumbate samantha adams sameera ayob-essop sandra makwembere sharifa moosa tayob sharon moonsamy sherpard nyaruwata shona mcdonald siwe toto sonti i. pilusa soraya maart stephanie c. pillay sthembiso blose suna verhoef sunita j. kathuria surona j. visagie tania de villiers tanya l. bekker tasneem hartley tawagidu mohammed tawanda makuyana terry j. ellapen theresa lorenzo thuli g. mthembu tom shakespeare tonderai w. shumba unati stemela-zali vesper chisumpa vic j. mckinney wisdom k. mprah zukiswa nzo http://www.ajod.org� https://ajod.org https://ajod.org https://ajod.org/index.php/ajod/user https://ajod.org/index.php/ajod/user mailto:publishing@aosis.co.za abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) toni abrahams department of psychiatry and mental health, faculty of health sciences, university of cape town, cape town, south africa western cape department of health, lentegeur psychiatric hospital, cape town, south africa sharon kleintjes department of psychiatry and mental health, faculty of health sciences, university of cape town, cape town, south africa western cape department of health and wellness, cape town, south africa citation abrahams, t. & kleintjes, s., 2023, ‘respite care models and practices for persons with intellectual disability: a scoping review’, african journal of disability 12(0), a1115. https://doi.org/10.4102/ajod.v12i0.1115 review article respite care models and practices for persons with intellectual disability: a scoping review toni abrahams, sharon kleintjes received: 18 july 2022; accepted: 20 june 2023; published: 25 july 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: families are the primary caregivers for persons with intellectual disability (id), offering informal support to ensure community living. ensuring families are adequately supported is key to reduce the financial, physical, mental and social toll which long-standing inadequately supported care giving may evoke. respite care is such a support service offered to caregivers and care-recipients with id. objective: part of a larger study aimed at developing a respite care service framework for persons with id for south africa, the review aimed to elucidate what principles and practices inform current respite care services for this population globally. method: the joanna briggs institute (jbi) scoping review framework guided the review. databases were searched using key and surrogate terms for relevant literature published from 2006 to 2021. results: thirty-one sources met the inclusion criteria from 417 screened sources of evidence. these were published between 2006 and 2020, and included grey and peer-reviewed articles, the latter mostly mixed design. information on respite care service characteristics, principles, practices, guidelines, evaluations and impacts were found for highbut not low-and-middle-income countries (lmics). conclusion: there is an existing knowledge base that can be drawn on to inform the development of quality respite care. the lack of published information on respite care in lmics necessitates further research to ensure contextually appropriate respite care developments in these settings. contribution: this study contributes to the knowledge base on respite care for persons with id and points out the research gap in lmics. keywords: intellectual disability; respite care; short break; support; family; services; culture; lmic. introduction intellectual disability (id) is understood as significant global impairment in intellectual and adaptive functioning presenting in early development (apa 2013). it is more prevalent in lowand middle-income countries (lmics) (maulik et al. 2011) and is a major disability grouping in africa (mckenzie, mcconkey & adnams 2013). families are usually primary caregivers for persons with id, offering informal or unpaid support (who 2011), so ensuring that they are supported is important (aldersey, turnball & turnball 2016). with inadequate support, caring can take an emotional, financial, physical, mental and social toll on caregivers (neely-barnes & dia 2008; sandy, kgole & mavundla 2013; yantzi, rosenberg & mckeever 2006), particularly for women who usually carry the burden of care (mckenzie et al. 2013). the toll can affect care-recipients with id who may experience neglect and abuse (reid, sholl & gore 2013; strunk 2010). respite care is defined as any service affording temporary relief to caregivers to preserve caregiving roles (chan et al. 2012), and accrues benefits to the person with id (guerin et al. 2021), caregivers and family (whitmore 2017). as an important component of disability support services, respite care models vary by location, provider, duration, frequency, setting, funding, choice and other supports offered, with different contexts requiring different models to offer appropriate services (who 2011). good quality respite care offers benefits such as sustained caregiving roles; improved mental health, physical health, coping, finances, family quality of life and relationships; reduced stress and decreased abuse and institutionalisation (masulani-mwale et al. 2016; reid et al. 2013). article 28 of the convention on the rights of persons with disabilities (crpd) obligates states to assist with respite care (un 2006); however, provision remains inadequate especially in lmics (who 2011). a scoping review is useful for identifying key characteristics related to topics of interest (peters et al. 2020). this review was conducted to identify global models, practices and principles that can inform respite care service development for persons with id. the scoping review is part of a larger study aimed at developing a service framework for respite care for persons with id for south africa. research methods and design the joanna briggs institute scoping review framework (peters et al. 2020) guided the review process. the preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (prisma-scr) (tricco et al. 2018) guided reporting. the population, concept and context framework was utilised to refine the review questions and inform the search strategy. the population included children and adults with id; the concepts were models, standards, norms, best practice, guidelines and service frameworks for respite care within the global context. the review questions were: what service models for respite care for children and adults with id are used globally? what standards, norms, best practice, guidelines and service delivery frameworks inform such services? what service evaluations are performed? what impacts are seen? a protocol was developed but not registered because of the short timeframe available within which to conduct the review. protocol databases were searched to avoid review duplication. covidence was used as the screening and data extraction tool. eligibility criteria inclusion criteria used to select the articles were: (1) referred to respite care and (2) referred to id (or surrogate terms), (3) peer reviewed and selected grey literature published between 01 january 2006 (coinciding with crpd adoption) and 31 december 2021, (4) provided details of the respite care service model and (5) provided detail on respite care service standards, norms, best practice, guidelines, service delivery frameworks or standards of care, and (6) english publications. search strategy an initial search strategy was developed by the first author, then refined with the faculty librarian for each database. the final search on 21 february 2021 was limited by date and language. the search string for pubmed, for example, was ‘(intellectual disability or mental retardation or development disability or intellectual development disorder) or (intellectual disability [medical subject headings {mesh}]) and (respite or short break or short-term break or short-term relief or relief care or outreach care) or (respite care [mesh]) and (model or standard or norm or best practice or guideline or framework) or (standard of care [mesh]) filters: from 2006 to 2021’. selection of sources of evidence the following databases were searched individually or via ebscohost: academic search premier, africa-wide info, cinahl, socindex with full text, apa psycinfo, apa psycarticles, healthsource: nursing/academic edition, scopus, pubmed, cochrane and web of science. primo and google scholar were searched for grey literature (filtered on conference proceedings and unpublished theses). the results were imported into endnote. two reviewers, the first author and a co-reviewer, independently screened initial sources (n = 366) on title and abstract, then on full text (n = 72), then hand-searched the references of the included sources (n = 27) and repeated the screen on the additional source set (n = 51) to arrive at an initial inclusion list of 47 articles. screening conflicts were discussed by the reviewers to come to consensus about inclusion or exclusion at each stage. although not required, for additional rigour as the reviewers were now fully familiar with the source content of the full set of included articles, an additional full text screen on the list of included sources was performed (n = 47), resulting in further sources being excluded (n = 16). the reason for exclusion at this point was that the sources were deemed to not sufficiently provide information on standards, norms, best practices, guidelines and service delivery frameworks to warrant inclusion in the final list (n = 31). figure 1 details the process, including reasons for exclusion used across the process. no critical appraisal or risk of bias assessment was conducted as these are not required for scoping reviews (munn et al. 2018). figure 1: flow diagram for the scoping review process. data charting process a data extraction template was developed based on an initial overview of the literature on respite care for persons with id (peters et al. 2020). the template included fields for characteristics of the included evidence, characteristics of the respite care services and users, details of the standards, norms, best practice, guidelines, principles and frameworks, and details on evaluation and impacts. the initial template was piloted on four articles. synthesis of results scoping reviews present and describe identified data, rather than synthesise the results of included sources as this method lacks formal methodological quality assessment and this review included grey literature. basic frequency counts were employed to describe the results (peters et al. 2020) while content analysis was used for the qualitative data. ethical considerations ethical approval was obtained from the university of cape town, faculty of health sciences, human research ethics committee (hrec ref: 721/2020). results publication year ranged from 2006 to 2020, with a near even split between grey literature (n = 16) and primary research (n = 15) literature. of the primary research, there were predominantly mixed study designs (n = 7), followed by qualitative (n = 5) and then quantitative designs (n = 3). all were from high-income countries (hics), the majority from united kingdom, or britain, and ireland (n = 18), followed by new zealand (n = 4), united states (n = 3), australia (n = 3), france (n = 1), japan (n = 1) and norway (n = 1). table 1 and table 2, respectively, lists the primary research and grey literature evidence sources. table 1: primary research evidence sources. table 2: grey literature evidence sources. characteristics of service models for respite care for persons with intellectual disability care recipients and caregivers respite care services catered for all ages groups (n = 11) or for children (n = 10) or adults (n = 9) separately. one did not specify this detail. more than half (n = 19) did not specify severity of id. behaviours that challenge (btc) was mentioned in about half the articles (n = 17). predominately family and parents accessed services. purpose caregiver respite was the sole purpose for almost a quarter (n = 8) of the services, while more than half the services had multiple purposes for respite (n = 21). purposes related to caregivers included respite (arch national respite network 2015; merriman & canavan 2007; southby 2017; spooner 2020), stress alleviation and burden reduction (chan 2008) and support (kelly et al. 2020; mcconkey et al. 2011). purposes for care-recipients included respite (department of health 2007; holmes et al. 2010; mcconkey et al. 2011; merriman & canavan 2007; southby 2017), a break from daily routine (kiernan 2019), skills and independence development (chan 2008; southby 2017; spooner 2020), social inclusion (department of treasury 2007; mcconkey et al. 2011, 2013; southby 2017), a place of safety (mcclean et al. 2007), prevention of institutionalisation, admission, placement breakdown or out-of-area placement (dilks-hopper et al. 2019; national health services 2017b), and access to enjoyable, stimulating, constructive and positive activities (mcconkey et al. 2011). purposes for other recipients included family respite (bigham et al. 2017; department of health 2007; department of treasury 2007; holmes et al. 2010; mcconkey et al. 2011), family skills development (mcconkey et al. 2011) and student learning opportunities (bigham et al. 2017). criteria and service terms less than a third (n = 9) indicated inclusion criteria and fewer indicated exclusion criteria (n = 4) to access the service. under half the articles (n = 13) used the term respite or respite care exclusively while the term short break was used exclusively in far fewer (n = 5). types of respite care offered both inand out-of-home respite care was offered (n = 24). the most frequently mentioned in-home respite care was provided by formal carers or workers in the home (arch national respite network 2015; cramer & carlin 2008; department of treasury 2007; dilks-hopper et al. 2019; goodhead & mcdonald 2007; holmes et al. 2010; kelly et al. 2020; merriman & canavan 2007; ministry of health 2018; nishigaki et al. 2017; roos & søndenaa 2020; southby 2017). specialist or professional support in the home was also offered where required (arch national respite network 2015; holmes et al. 2010; nishigaki et al. 2017). other examples of in-home respite care included emergency care in the home (chan 2008), home help and home care (department of treasury 2007; goodhead & mcdonald 2007; logiudice et al. 2012; nishigaki et al. 2017). a variety of out-of-home respite care was reported. table 3 provides examples and definitions of some of these. the most frequently reported location of out-of-home respite care was residential homes or care facilities (arch national respite network 2015; chan 2008; department of health 2007; department of treasury 2007; goodhead & mcdonald 2007; kelly et al. 2020; nhs england 2017a, 2017b; nicholson et al. 2019; roos & søndenaa 2020; southby 2017; staley 2008; stalker & moscardini 2012). this was followed by day-care centres (cramer & carlin 2008; kelly et al. 2020; merriman & canavan 2007; nhs england 2017b; nishigaki et al. 2017) and hospitals (arch national respite network 2015; batata et al. 2017; chan 2008; nhs england 2017b; nishigaki et al. 2017). out-of-home respite also included access to community activities (cramer & carlin 2008; mcconkey et al. 2011, 2013; national advisory committee on health and disability 2010; staley 2008), recreational and leisure activities (logiudice et al. 2012; roos & søndenaa 2020; southby 2017), creative activities (logiudice et al. 2012), and social activities (nicholson et al. 2019). table 3: examples of out-of-home respite care. duration and scheduling many (n = 21) offered overnight and day services. almost half (n = 14) offered a combination of short-, mediumand, in fewer instances, long-term stays. services were offered on weekdays, weekends and holidays. half (n = 16) offered emergency and planned use, with half of those (n = 8) offering scheduling flexibility. package of care about half (n = 17) indicated respite care was part of a package of care, while only a few (n = 2) offered respite care exclusively. over a third (n = 12) did not specify this detail. examples of other package components included medical and allied healthcare (dilks-hopper et al. 2019; merriman & canavan 2007), assessment, treatment, training, support, transition coordination and crisis response (national health services 2017b), regular reviews (department of health 2007), educational services (dilks-hopper et al. 2019), positive behaviour support (pbs) programmes (kiernan 2019), home visits (holmes et al. 2010) and respite funding (spooner 2020). over a third (n = 12) provided a combination of activities, including recreational, leisure, educational, social and skills development activities but only a few (n = 5) specified that they offered activity choices to care-recipients with id. service providers the state was the key provider in most sources (n = 25). most (n = 24) providers were formal (paid) providers, with a few services (n = 5) using a combination of informal (unpaid) and formal providers. approximately two thirds (n = 20) addressed staffing quality, which focused on experience, skills, training, qualification, supervision, cultural sensitivity, staff support, inclusion of experts by experience, competency assessment, trust, rapport, relationships with users, retention, continuity, remuneration and values and attitudes (e.g. department of health 2007; goodhead & macdonald 2007; mcconkey et al. 2013; ministry of health 2018; national health services 2017a, 2017b; southby 2017; spooner 2020). funding slightly more than half indicated state funding (n = 17), with very few (n = 3) indicating access to special and innovation funding. over half (n = 18) discussed service cost-effectiveness. responsiveness to need half (n = 16) based the respite care service on the needs of caregivers, family and the care-recipient, rather than only the needs of the caregiver. the range of needs assessment approaches included the biopsychosocial approach (national health services 2017b), person-centred approach (department of health 2007), risk taking assessments (hanrahan 2010), functional assessments and direct observation (dilks-hopper et al. 2019). these looked at, for example, family needs, behaviour, recipient needs and goals (bigham et al. 2017), caregiver burnout and exhaustion (batata et al. 2017), and family ability to provide support (mcconkey et al. 2011). assessments were performed by varied stakeholders such as individual professionals, multidisciplinary teams and panels, which assess needs and resource use (hanrahan 2010; holmes et al. 2010; mcconkey et al. 2011). standards, best-practices, guidelines, service delivery frameworks and principles for providing respite care to persons with intellectual disability two thirds of the sources mentioned principles (n = 21) and about half reported on best practices (n = 16), while service frameworks (n = 9), guidelines (n = 8), standards (n = 6) and norms (n = 1) were mentioned less frequently. table 4 summarises the data extracted on principles, best practice, service delivery frameworks, and guidelines for respite care. standards mentioned included national minimum standards for children’s homes (holmes et al. 2010), supporting people with profound and multiple learning disabilities core & essential service standards (spooner 2020) and nice guidelines for challenging behaviour and learning disabilities and autism (nhs england 2017b). care standards in the uk also offer a means to improve standards of practice and a way to evaluate services (cramer & carlin 2008), while national minimum standards are needed (hanrahan 2010). standards can also aid consistency of procedures in services for those with btc (mcconkey et al. 2011). only roos and søndenaa (2020) reported on norms, specifically guidelines on staffing norms for services for children with profound id. table 4: principles, best practice, service delivery frameworks and guidelines. under a quarter (n = 5) mentioned culture in guiding service offerings. for example, logiudice et al. (2012) referred to cultural protection and comfort, national health services (2017a) referred to cultural sensitivity, goodhead and mcdonald (2007) referred to cultural safety while nishigaki et al. (2017) suggested avenues to address caregiver guilt, which can be elicited by cultural norms when services are accessed. national advisory committee on health and disability (2010) found respite care was not viewed as a substitute for whaānau or family-provided care in new zealand. respite care evaluation and impact services were evaluated in slightly more than half (n = 17) of the sources. service evaluation methods included caregiver interviews (merriman & canavan 2007), satisfaction and evaluation surveys (chan 2008), service audits and developmental evaluations (national advisory committee on health and disability 2010), independent evaluations (logiudice et al. 2012), use of outcomes frameworks (national health services 2017b), teacher assisted interviews and online surveys (ministry of health 2018), a national id database (kelly et al. 2020), psychometric assessment, medication review, service review and revenue costs (mcclean et al. 2007). one source described formal 6-monthly service-led, multiagency home-based reviews (mcconkey et al. 2011). few studies (n = 3) used specific assessment tools. positive outcomes of respite care for parents were found using the parenting stress scale (bigham et al. 2017) and for care recipients with btc using the quality-of-life questionnaire (mcclean et al. 2007). nicholson et al. (2019) found no difference on self-report but differences in proxy measures of quality of life using the self-reported quality of life scale and the inico feaps to measure quality of life for persons with mild to moderate id. identified impacts included continued support and delayed out-of-home placement (dilks-hopper et al. 2019) and increased service provision, usage, improved service quality and access (logiudice et al. 2012). evaluation also demonstrated benefits to a range of recipients including caregivers, care-recipients with id and families (mcconkey et al. 2011, 2013) and respite providers (bigham et al. 2017; openden et al. 2006). discussion the review provides rich information on respite care models and practices albeit only from hics. the existence of these services coupled with the principles that inform these reinforces the importance of offering good quality respite care to caregivers of those with id, who have particular support needs (lee, burke & perkins 2022; lunsky et al. 2014), especially because informal caregivers represent a significant population of those who care for persons with id in the community (lunsky et al. 2014). the review results suggest that respite care is one important tool to actualise informal caregivers’ right to support, not only through its intended purposes and impacts but also through empowered provision, which the principles and practices espouse. while states rely on informal caregivers to care for citizens with disability, over-reliance on informal caregivers can have detrimental effects on caregivers and care-recipients (who 2011). service provisions should be aligned to enforce the right to respite care and other rights such as the right to participation as elaborated in the crpd, as has been conceptualised, for example, in respite care services in new zealand (ministry of health 2017). in contexts where this is less developed, great care should be taken in policy guidelines, service development designs and resourcing to guard against simplistic understanding of respite care as a mere break for family caregivers (chesson 2001), and instead to promote understanding that it is in service of the health and well-being of multiple stakeholders (aldersey et al. 2016; welch et al. 2012; whitmore 2017). the results provide clarity on how respite care services are delivered. respite care is a primary service offering, not an incidental benefit of another service, which reinforces the importance of explicitly offering this kind of this service (neece & lima 2016). that most of the formal services are focused on both family caregivers and care-recipients, and have multiple purposes beyond merely offering a caregiver break, is likely impacted by contemporaneous definitions of respite care. these definitions highlight that respite care should benefit caregivers, care-recipients with id and families (kirk & kagan 2015; robertson et al. 2011; whitmore 2017). the importance of a lifespan approach to respite care provision is documented (kirk & kagan 2015; remedios et al. 2015) and echoed in the findings of this review, which included an even spread of data on respite care services for both children and adults. children with id with inadequately supported caregivers are, for example, more likely than their peers without disability to be placed in out-of-home care and residential care where their attachment, social and emotional development can be negatively impacted and where they are more at risk for maltreatment (shannon, wilson & blythe 2023). the literature also suggests that respite care services for adults with id need further attention because of, for example, compound caring where older caregivers care for older adults with id (lee et al. 2022). the severity of id was not often specified, possibly because the services are based on individual support needs, not intelligence quotients, in accordance with best practices and current definitions of id. inclusion and exclusion criteria were not often specified; however, service users and referring providers need access to this information to know what services are accessible. this omission may result because clear policies exist in hics around respite care access to guide referral processes (mencap 2018; ministry of health 2017). the range of inand out-of-home offerings provide diverse and developmentally appropriate activities and elicit exciting possibilities for what could constitute respite care in different settings. murphy, begley and doyle (2021) reinforce the need to offer a range of responsive respite care services, while guerin et al. (2021) highlight the importance of alternative models of respite care. a focus on flexibility in duration, timing, and frequency of use, with emphasis on the need for crisis responses on a 24-h basis, especially for persons with id and btc seems underpinned by best practice and is supported in the literature (mccombe et al. 2022). long-term stays were minimally specified in line with the right to community living and deinstitutionalisation for persons with id (mansell 2006). the review highlights that respite care as a component of a package of care should be determined by need. the needs of both parties are considered; however, caregiver needs still dominate in the literature (nankervis et al. 2011). this is possibly exacerbated by service provider’s communication and training barriers to directly assess care-recipient’s needs (kittelsaa 2004). the results show that evaluations to identify service provision impacts are undertaken using multiple perspectives and varied tools; however, a specific tool to measure respite care benefits such as that developed by otsuki, fukui and sakaguchi (2020) may prove useful to provide quantitative evidence, which is lacking in this area (iassidd 2014). the implication of the review for service delivery considerations is as follows: that utilised definitions and terms need to be as contemporaneous and as uniform as possible, there needs to be clear policies that provide information about service access, the varied forms of respite care need to be embraced and further developed in different contexts, rights provisions should and can be upheld when providing quality respite care, and packages of care should be offered based on caregiver and care-recipient needs, with special effort to determine the needs of persons with id. the review also highlighted a significant sub-population, namely persons with id and btc, who require specialist intervention to protect their rights because they are at far greater risk of social exclusion (bigby et al. 2012). the presence of btc can have pervasive negative impacts on caregivers and care-recipients (kiernan et al. 2019). for persons with id especially, it can result in infringement of their rights to community living when placement breaks down and they are institutionalised in restrictive settings (reid et al. 2013). respite care is a necessary care package component for these individuals and their families, as is training, support, intervention and an intersectoral approach to care (mcconkey et al. 2011). for example, respite care and skills development may serve as preparation for independent living for older adults with id and btc (tilley et al. 2022). intervention should be offered as early as possible and based on individual and family needs (kiernan et al. 2019). evidence of good practice in hics with this subset of the id population can be used and informed by research on how to adapt the model to different settings without losing the essence of what works (coetzee et al. 2019). the review showed that hics’ state support systems play an important role in service provision to families of children with disabilities (nuri, batorowicz & aldersey 2020). states have a pivotal role in funding responsive formal public sector support services and in setting standards and regulating services (who 2011). state support enables the use of formal providers by empowering informal caregivers, for example when such caregivers are remunerated for their labour via us medicaid waivers for people with id (friedman & rizzolo 2016) or enabled to access respite care through medicaid home and community-based services (eskow, pineles & summers 2011). state support for respite care may also be mandated by legislation and policy in the countries included the review, which in turn allows respite care budget allocations to aid provision. for example, new zealand’s 2017–2022 respite strategy is founded on numerous legislative instruments and makes provision for varied forms of funding, framing respite as an investment in health and well-being of its citizens (ministry of health 2017). nuri et al. (2020) affirm the importance of policies that make provision for financial support to families who cannot afford the costs of raising children with disabilities in lmics. implications of these findings include the need for legislation and policy to support respite care provision and to open budgeting avenues, the latter of which can be supported by research into the cost-effectiveness of contextually appropriate respite care models in lmics settings. a significant finding was the lack of published research focused on respite care for persons with id in lmics. this mirrors the imbalance of published id research in general compared with hics (mckenzie et al. 2013). a similar picture exists for research on support for families of children with disabilities in lmics (nuri et al. 2020). while some literature touches on respite care in lmics (e.g. aldersey et al. 2016) it does not offer specific information on this kind of service provision. the lack of published research on respite care for those with id in lmics may result from services not being formally documented in research. a reason for this may be that mental health professionals in lmics and by extension other professionals involved in id care, have tended to respond to caregiver intervention needs with innovative approaches but without research to inform policy (murthy 2016). research funding for id also takes place in a competitive environment where other research priorities take precedence (holland 2010), and funds may not as yet be available to invest in such research. an implication is that published research on respite care for persons with id in lmics needs to be encouraged and funded. the lack of published research on respite care in lmics may also suggest a gap in formal respite care services. nuri et al. (2020) found that families still rely more on informal support, inclusive of respite care from family in lmics, in line with earlier findings that formal disability support services are more common in hics (who 2011). in africa, for example, formal respite care is not as readily available, with only 14% of african countries offering this service (who 2007), despite 65% of african countries ratifying the crpd (lord & stein 2013). nuri et al. (2020) argue that the difference in extent of formal supports, including respite care for those with disabilities, between hics and lmics results from economic, cultural and social contextual differences where increased poverty, limited health and social care systems, stigma and discrimination and cultural values play a role in lmics. some african studies reinforce this argument. for example, poverty presents significant challenges for family caregivers (mcnally & mannan 2013; mkabile & swartz 2020) as does stigma and discrimination (mkabile et al. 2021; tilahun et al. 2016). if efforts are made to correct the service imbalance in lmics, the information found in this review could be adapted for use; however, context influences provision (evans 2013) and the lack of lmic respite care research means that specific contextual factors and constraints are unknown. societal level culture, as a contextual factor, needs exploration because the review showed that culture plays a role in services, possibly underpinned by the right to cultural identity in the crpd (un 2006). culture informs access to and respite care use (durà-vilà & hodes 2009; neely-barnes & dia 2008; van den mark et al. 2019). culture also influences what is understood as respite (dysart-gale 2007), what constitutes acceptable approaches to and who is responsible for care (murthy 2016) as well as impacts on stigma experienced by caregivers (hussain & raihan 2022). it also remains to be seen how the identified best practices, which are funded to permit individually focused service offerings in many instances, may need to be adapted to align with the values, practices and funding envelopes of more collectivist, culturally different settings. for example, a best practice observed in this review is tailoring intervention to individual need. this might conflict with the needs of the family and community, considered equally important from an interdependence perspective or when family and service definitions of btc do not resonate with each other (hatton et al. 2010). understanding that caregivers value and need respite care (lunsky et al. 2014; nuri et al. 2020), an implication is that researchers should study the extent and provision of respite care services offered in lmics. researchers and service providers also need to establish if existing hics respite care offerings, practices and principles can meet the needs of service users in lmics contexts, and if not, how to setup services to run responsively, appropriately, cost-effectively and sustainably (coetzee et al. 2019). limitations while the search was as exhaustive as possible within the constraints of the scope of the study, there may have been further unpublished grey literature on respite care in lmics. a review of websites of organisations who offer respite care or inclusion of languages other than english may have revealed more literature on respite care in lmics. while the search may not have been exhaustive enough to ensure all country reports were included, those that were found were from the hand-search of the initially included sources, which met the inclusion criteria, and were thus relevant. that the protocol was not registered was a limitation; however, reviews that commence with a detailed protocol, registered or not, can meet the requirement of transparency and reporting bias (khalil et al. 2021). conclusion the review has shed light on how respite care services are offered, specifically in hics. the existence of a knowledge base of respite care principles and practices that draw on a rights perspective can be harnessed to ensure good quality respite care services are offered in other settings. the lack of respite care information for lmics, however means there is a gap in understanding the full extent and nature of respite care in these settings. this should be addressed to ensure development and provision of contextually appropriate id respite care, which is responsive, sustainable and effective. respite care research in lmics can bridge the identified gap and aid advocacy efforts for respite care policy and practice. acknowledgements the authors would like to acknowledge feroza cassim, an occupational therapist with id experience, who assisted as the co-reviewer. they would also like to thank dilshaad brey, senior faculty librarian at the university of cape town (uct) who assisted with the database search criteria development. this article is partially based on the author’s thesis of the degree of dphil in psychiatry and mental health at the university of cape town, south africa, with supervisor prof. s. kleintjes. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions t.a. undertook the conceptualisation of the review, review questions, methodology, analysis, write-up, administration, revisions and correspondence for the review. 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social care in the community 15(1), 45–55. https://doi.org/10.1111/j.1365-2524.2006.00663.x article information author: karen lazar1 affiliation: 1division of languages, literacies and literatures, school of education, university of the witwatersrand, south africa postal address: 1 jan smuts avenue, braamfontein 2000, johannesburg, south africa how to cite this article: lazar, k., 2014, ‘the other organs’, african journal of disability 3(1), art. #124, 1 page. http://dx.doi.org/10.4102/ ajod.v3i1.124 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. the other organs in this community paper... open access • crossroad • lung • sensate crossroad top ↑ i’m the right hemisphere of your brain i operate across the middle i issue commands to your left arm and it waves at me i call to your left knee and it flexes up a step. what mischief is this, what paradox of symmetry? my neighbour the left hemisphere is a stern chap good with numbers and logic, organised. i’m the one holding the paint brush and the flute i splash colour and i warble. sometimes we squabble, or quibble over turf. if he stores your first language, can i store your second? if the dam bursts if i drown in blood or gasp for oxygen when a clot blocks your highway, your waving arm and flexing knee surrender to weakness, or worse. i try, i really try, to bring what’s left of me to take over from what’s gone. resume my creating, my issuing of commands. but sometimes my sullen tissue wins out and, straining, i send you signals. they lie like post unread. i rail in frustration, hurl myself against the skull when he over the fence, my neighbour, gets clotted or washed into failure you grow mute, of limb and tongue. he twists and tries to scream at me: do something i try to help with his work but often i am blocked by the divide. we watch at the cross-roads, thwarted traffic officers, side by side, but sequestrated. lung top ↑ i’ve never understood why my neighbour your left arm doesn’t stir but here i am peacefully inflating and deflating in, out, in, out. the work of decades but i never grow bored does a tide at sea grow apathetic? your bossy heart booms at me, also working overtime but working nonetheless. yet limp is the arm, and useless the foot’s limp stricken into stillness. my willing bronchi, tiny trees or kelp wave at you in a soft gust, a ripple passing. wisps fly to the apex the base is panting my cage of ribs billows out again i fill again. in, out, in, out. the cage is pliable though the limbs are stone. how so? i think i believe in an officer who exempts. sergeant right hemisphere has frozen your arm and your leg but kept me warm and gusty. a miracle of exemption how selective illness is. sensate top ↑ funny thing, paralysis, you feel nothing but you feel everything. a symphony with the volume down heat comes at you, pain does, noise and light scream, in fact billions of nerves mumble, going nowhere, buzzing at you you feel pleasure, though the world thinks you’re no longer really a woman or a man, with longings, with a pulse in the groin a concentric heat a rippling depth a moist suppleness meeting an other’s sensation if they dare to meet yours this half-body this awkwardness, this yearning for wholes abstract introduction methods results discussion strengths and limitations recommendations for future research conclusion acknowledgements references footnotes about the author(s) dafne zuleima morgado ramirez interaction centre, department of computer science, faculty of engineering, university college london, london, united kingdom global disability innovation hub, london, united kingdom brenda nakandi biomedical engineering unit, department of physiology, school of biomedical sciences, college of health sciences, makerere university, kampala, uganda robert ssekitoleko biomedical engineering unit, department of physiology, school of biomedical sciences, college of health sciences, makerere university, kampala, uganda louise ackers school of health and society, university of salford, salford, united kingdom erisa mwaka department of anatomy, college of health sciences, makerere university, kampala, uganda laurence kenney centre for health sciences research, university of salford, salford, united kingdom cathy holloway interaction centre, department of computer science, faculty of engineering, university college london, london, united kingdomglobal disability innovation hub, london, united kingdom maggie donovan-hall school of health sciences, faculty of life and environmental sciences, university of southampton, southampton, united kingdom citation morgado ramirez, d.z., nakandi, b., ssekitoleko, r., ackers, l., mwaka, e., kenney, l., et al., 2022, ‘the lived experience of people with upper limb absence living in uganda: a qualitative study’, african journal of disability 11(0), a890. https://doi.org/10.4102/ajod.v11i0.890 note: additional supporting information may be found in the online version of this article as online appendix 1. original research the lived experience of people with upper limb absence living in uganda: a qualitative study dafne zuleima morgado ramirez, brenda nakandi, robert ssekitoleko, louise ackers, erisa mwaka, laurence kenney, cathy holloway, maggie donovan-hall received: 05 may 2021; accepted: 19 jan. 2022; published: 20 may 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the impact of upper limb absence on people’s lived experiences is understudied, particularly in african countries, with implications for policy and service design. objectives: the objective of this study was to explore the lived experiences of people with upper limb absence (pwula) living in uganda. method: informed by preliminary work, we designed a qualitative study employing semi-structured interviews to understand the experience of living with upper limb absence in uganda. seventeen adults with upper limb absence were individually interviewed and their interviews were analysed utilising thematic analysis. results: seven themes illustrating the impact on the individual’s life after amputation were identified and categorised into (1) living and adapting to life, (2) productivity and participation and (3) living within the wider environment. this study presents three main findings: (1) pwula need psychological and occupational support services which are not available in uganda, (2) pwula want to work, but face multiple barriers to employment and has limited support, combined with the complex parenting and caring responsibilities, (3) the local ugandan culture and social structures affect the everyday life of pwula, both in positive and negative ways. conclusion: this study provides information on the lived experiences of pwula in uganda which are lacking in the literature. people with upper limb absence face ableism and hardship underpinned by a lack of formal support structures and policies, which may in turn exacerbate the impact of upper limb absence on multiple facets of life. keywords: ableism; amputation; disability; lived experience; psychosocial; upper limb. introduction it is estimated that globally 65 million people live with limb amputations, and 1.5 million people undergo amputations every year, with 40% being upper limb amputations (lao et al. 2020). two thirds of people with amputation live in low resourced settings (lao et al. 2020) and it is estimated that 5 million of the amputee population live in africa, of which around 25% are upper limb amputees (lao et al. 2020). an upper limb amputation is a surgical procedure that removes a part of the upper limb (hand, forearm, upper arm, shoulder) following disease or trauma (maduri & akhondi 2020). in low resource settings, traumatic experiences such as road accidents and conflicts (war, civil conflicts) are common causes of upper limb amputation, as are poor access to acute medical care (commission on the social determinants of health 2008; kenney et al. 2019). in uganda, functional difficulties (which can lead to disability) have been measured, but have only focused on walking difficulties and sensory impairments (uganda bureau of statistics 2018, 2019). about 12.5% of the ugandan population has at least one form of walking or sensory disability (uganda bureau of statistics 2019). unfortunately, the percentage of people with physical disabilities related to the upper limbs in uganda is unknown, although by 1996 the number of people with limb loss was estimated to be over 5 000 (staats 1996). however, upper limb loss is known to be common, due in part to the 20 years of civil conflict in the north, north east and western regions in uganda that resulted in maiming of people with many ending up with limb amputations (dolan 2009). the number of people with amputation or upper limb absence (pwula) by 1996 was estimated to be over 5 000 (staats 1996). previous work has shown that there is no data published on the number of pwula and no amputee registry in uganda (kenney et al. 2019). however, in the last decade, trauma accounted for the highest number of incidents of upper limb amputation in uganda’s referral hospitals (muhumuza & bangirana 2015), with only two studies exploring aetiology, outcomes, experiences, challenges and prevalence of people with upper and lower limb amputation living in the acholi sub-region of northern uganda (atim et al. 2020; okello et al. 2019). amputees in northern uganda face inaccessible and inappropriate rehabilitation services, stigma and marginalisation (okello et al. 2019). the prevalence of major upper and/or lower limb loss was estimated to be 11 400 people out of 1.9 million in the acholi sub-region (atim et al. 2020). in addition, a consultation with various stakeholders in kampala (kenney et al. 2019) revealed that most of limb loss in uganda is currently due to trauma caused by road accidents, violence, fire, occupational accidents, congenital limb loss, illness and improper intravenous therapy practices. while in the acholi region, the most common reasons for amputation are malignancy, gangrene and diabetes complications (atim et al. 2020). limb loss or absence is a disability and thus the ugandan legislation on disability is relevant to people with upper limb absence (pwula). in 2010, a study comparing international and ugandan disability legislation noted that there was a need for more resources for disabled people, leadership and collaboration between government, funding bodies and disabled people’s organisations (dpos), disability awareness and training, representation from all types of disabilities, and further legislation to cater for disabled people in uganda (millward et al. 2005). following this, uganda ratified the united nations convention on the rights of persons with disabilities followed by a report in 2016 to the un committee that provided a list of concerns and recommendations (committee on the rights of persons with disabilities 2016). concerns included the prevalence of the use of derogatory language towards people with disabilities (pwds), absence of mechanisms to consult dpos beyond the national council for disability, insufficient legal protections for pwds against discrimination and lack of mechanisms to create public awareness of stigmatising cultural practises. in 2019, the african union analysed policy and strategy documents from uganda, kenya, sierra leone and zambia (lang et al. 2019) and showed that recognition of the rights of pwds is not integrated within implementation plans, budgetary allocations, enforcement mechanisms and disaggregated management information systems. this political context sets the scene for our study because pwula in uganda may be affected by that lack of legal protection within an environment that is psychosocially detrimental. about 75% of uganda’s population lives in rural areas where 80% of households are involved in agriculture and 69% depend on subsistence farming (uganda bureau of statistics 2019). activities of daily living in these settings are done manually, for example, personal care, childcare, collecting water and firewood, digging, laundry and dishwashing, among others. furthermore, most agriculture in uganda is non-mechanised and thus a majority use hand-held tools to tend gardens and farms. studies in other settings have shown that, with partial or full loss of one hand or both hands, pwula in uganda have difficulty performing daily life activities and thus their quality of life diminishes and their reintegration in society becomes challenging (shahsavari et al., 2020). additional challenges are pain (davidson, khor & jones 2010; desmond & maclachlan 2010), infections (ajibade, akinniyi, & okoye 2013), muscle contractures (baker & clouse 2016), social and economic discrimination (beisland & mersland 2014; murphy 2005; sood et al. 2020) and psychological issues such as post-traumatic stress disorder and depression (with women being more affected) (armstrong et al. 2019). barriers to economic participation are also intersectional1 with multidimensional poverty2 (eide, khupe & mannan 2014; united nations development programme and oxford poverty and human development initiative 2019), gender-based violence (guloba et al. 2018) and poor access to prosthetic devices (lao et al. 2020) further affecting people with disability. in the acholi region, people with major limb loss that participated in a study (atim et al. 2020) had no access to assistive technology (45.5%), had no access to rehabilitation services (46.6%) and 9.4% reported never having accessed any type of healthcare, only 1% of surveyed individuals with limb absence had been referred to rehabilitation (atim et al. 2020). research aimed at understanding the lived experience of people living with limb loss is fundamental in shaping and improving current prosthetics and orthotics services and directing future research (dillon et al. 2019). previous qualitative research aimed at understanding the lived experience of people with limb absence has focused mostly on lower limb and has been conducted in predominantly high resourced settings (europe and north america) (atim et al. 2020; johansen et al. 2018; ligthelm & wright 2014; stutts et al. 2015; vargas et al. 2014; woods et al. 2018). a study in the acholi region of uganda found that people with upper and/or lower limb absence experience stigma and marginalisation, which affect relationships and job prospects (atim et al. 2020). we came across only one other study that explored the living experiences of individuals living with upper limb loss from sub-saharan africa; and that was in the tswane region of south africa (ligthelm & wright 2014). studies from outside africa show that pwula have difficulty in engaging in work related activities (johansen et al. 2018), interacting with others for intimate relationships (stutts et al. 2015; woods et al. 2018) and they experience a lack of coordination among teams responsible for their rehabilitation (vargas et al. 2014). given the scarcity of data regarding the lived experience of pwula in uganda and the social value that such knowledge would have in shaping upper limb prosthetics services, this study aimed to explore the lived experiences of pwula living in uganda. this paper explores the experience of people living with limb loss in uganda, regardless of their time since their amputation, looking at their environment including psychosocial aspects, participation, and culture. it therefore does not just focus on acquiring a disability and adjusting to an amputation. methods this study is part of a research programme (kenney et al. 2018) aimed at creating fit-for-purpose upper-limb prostheses for use in low resource settings, underpinned by the user’s needs (hayes, buckland & tarpey 2012). this current study reported here involved two phases and was carried out in uganda with research partners based in kampala. phase 1 has been published elsewhere and consisted of scoping work adopting a ‘patient and public involvement and engagement’ (ppie) framework which is an approach used to ensure the engagement of stakeholders that the research is intended to benefit in the design and development of the research, so as to gain a clear understanding of the environment (kenney et al. 2019). this involved carrying out thorough scoping and exploratory work, and informal discussion visits at a range of settings in the kampala and regional areas, including public hospitals, non-governmental rehabilitation services, orthopaedic workshops, private clinics, and companies within the field of prosthetics and orthotics service delivery. phase 1 informed the development and design of the semi-structured qualitative study presented in this paper (phase 2). phase 2 consisted of an exploratory qualitative study employing a semi-structured interview approach to understand the experience of people living with upper limb absence in uganda. as there is limited previous research exploring the aims of people with upper limb loss in low resource settings taking a user-led approach, an approach independent of an epistemological or theoretical framework was taken to provide maximum flexibility (braun & clarke 2013). the completion of phase 1 provided the opportunity for ugandan and uk teams to work in collaboration and identify the needs for phase 2 in terms of co-design approaches and for the data to be more acceptable for participants and for the local team to have a much deeper understanding of uganda’s linguistic and cultural diversity and social issues. this involved identifying important issues regarding the need for researcher capacity building, working in collaboration to reduce appropriate written information for participants, a pragmatic recruitment approach and the development of a flexible interview schedule that could be tailored to each participant’s needs. to build capacity within the local team, a bespoke qualitative research methods’ training package was developed in collaboration with team members. this was delivered in person by a qualitative researcher, in a two day workshop for the four ugandan team members involved in the data collection. the first day theme was to understand the aims of this study and processes of qualitative research, which involved all aspects of the research process including gaining ethical approval, carrying out ethical and responsible research and the handling of data. during the second day, the semi-structured interview schedule was studied and practised for developing interview skills. the semi-structured interview questions were revised to be socially and culturally relevant. the full interview schedule is made available in appendix 1. study population and sampling strategy convenience sampling was used to select pwula who were registered with an orthopaedic clinic in kampala, which was already familiar with the participants and was outside of the clinic setting (neutral and private environment for open discussions). due to the exploratory nature of the research, a convenience sample of anyone with unilateral or bilateral limb absence, due to any cause, and any level beyond only digits (below elbow or above elbow), shoulder disarticulation and forequarter amputation, were included in this study. from phase 1, we learned that the most culturally appropriate way to inform pwula about the study was via a telephone call from members of the orthopaedic team that potential participants already knew through their attendance to the clinic. during the call, the aims of the study and what the participation would involve was explained to the participants. they were informed that their participation was completely voluntary, and that they had the right to withdraw from the study at any time. a convenient time for the face-to-face interviews was arranged and participants were informed that there would be reimbursement for their travel. data collection and analysis participants were provided with a copy of the participant information sheet prior to starting the interview. they either read the information themselves or had it read to them. there was an opportunity to ask questions and they were plainly informed that they did not need to continue with the study and had the right to withdraw at any time. to account for all levels of literacy, consent could be provided by completing and signing a written consent form or providing a thumbprint signature. due to the exploratory and sensitive nature of the research topic, the use of one-to-one and in-person interviews were felt the most appropriate approach as opposed to telephone or online methods [36]. following feedback from phase 1 regarding the importance of participants feeling comfortable with the person interviewing them, a team of four interviewers carried out the interviews (three males and one female with different cultural backgrounds) to provide participants with a choice of the gender and cultural background of their interviewer. the interviews lasted between 30 and 100 minutes, they were audio recorded with consent, transcribed verbatim and translated by a professional company into english followed by a revision performed by two ugandan members of the research team. interviews were carried out between february and may 2019. assisted by software (qsr international nvivo 12), data was processed and analysed using thematic analysis (braun & clarke 2006, 2013). the first stage involved detailed coding of the data to find categories of experiences. regular meetings allowed a collaborative interpretation of cultural aspects of the coding with the ugandan researchers. to optimise rigour and consensus, themes were drafted by hand collaboratively through regular online meetings and asynchronous comments on a shared file containing the thematic analysis. results we have used pseudonyms to protect the identities of the participants. seven participants identified as female and ten as male. the year of the amputation varied from the 1980’s up to 2018. the cause of the amputation was mostly due to road accidents (nine participants), followed by violence (four participants). two participants lost their upper limb in a fire and one preferred not to specify the traumatic experience of his limb loss (table 1). twelve participants had amputations above the elbow, three below the elbow, one at the elbow and one had amputations of both arms at different levels. most of the participants did not report to own land and a house, they either rented a house or stayed with family members. table 1: participants’ characteristics in the following order: pseudonyms, age, gender, cause of amputation, amputation level, amputation side, year of amputation, employment before and after amputation. thematic analysis to understand different aspects of the experience of people living with upper limb absence in uganda, the themes identified were categorised into core categories that illustrate the impact on the individual’s lives. figure 1 provides an overview of the categories of themes. figure 1: overview of the three categories of themes. category 1 living and adapting to life, category 2 participation and productivity and category 3 living with the wider environment. category 1: living and adapting to life participants discussed coping techniques after amputation and how it impacted on their personal and family relationships. this also led to descriptions of adjustments to the amputation at a psychological level. theme 1: coping and managing with upper limb loss participants described practical approaches they had developed to cope while having only one arm. coping techniques involved using the residual limb (remaining part of the limb on the amputated side), assistive technology, and the support of other people. learning to complete activities one-handed often involved learning to incorporate the residual limb: ‘i can sometimes use the remaining part of the limb or the broken side [amputated side] to support when it’s really necessary, but on a larger extent i use my left arm hand, which is okay.’ (opolot) other participants incorporated the use of an assistive device to help complete activities one-handed, for example, to help complete or speed up the task of using jerry cans for bathing. another means of coping was the use of help from someone else to complete activities. nakanjako described: ‘i can cook if they have chopped the onions and tomatoes for me, i can cook the sauce but then i can’t use one hand to chop the tomatoes and onions.’ and kakuru explained: ‘at home i don’t get a lot of challenges because my wife can help me washing my clothes.’ while megere had to hire someone: ‘i used to dig, i could dig, i could rear some pigs, i could keep some potatoes and give the pigs the green leaves, but now these days i no longer do it perfectly, so i have to hire people to do it for me.’ participants gave priority to being able to manage and find new ways of completing daily life activities with one hand. these activities ranged from personal care to holding a phone and farming activities: ‘i can hold a phone with this one and also chop stuff therefore if it can hold a hoe i can dig’ (matovu). for other participants, being able to carry out activities using only one hand was important for the purpose of employment. for example, matovu who works as a taxi conductor explained how he found a way to manage taking taxi fares using one hand. despite the innovative ways that participants described managing with their upper limb loss, it was clear that it was still very difficult, and activities took significantly more time to perform and plan, as described by musinguzi: ‘though i take much more time, that is what i have learnt, so i usually like to know in advance what i am going to do, to plan and then try to do it in time like everyone else.’ as a student at a university that advocates for pwds’ rights through having a university funded pwds organisation, tugume discusses how meeting fellow pwula enables him to cope: ‘we share experiences about how we live, about how we can improve our lives, because you may find i use some skill in doing something which my friend doesn’t know […] we share how we can live better in life.’ most participants did not know what to answer when asked if they needed changes in the social and built environment. having learned ways to do daily chores with one limb and facing challenges with balance while moving, kakande described that climbing staircases without handrails is a challenge: ‘there is no building hard for me even when i have one arm, as long as it has these stands [handrails] for climbing and sloping.’ in contrast, nakanjako wished her social environment would adjust to be able to express feelings of joy altogether without favouring persons with both hands such as during celebrations: ‘the challenge i get the most – i am catholic woman – even on sundays, i don’t want to eat food without praying so the challenge i get, we can be around one thousand people or something, my colleagues clap their hands like they do, and i say, “oh my god” me, why me, why?’ theme 2: impact on personal and family relationships participants felt that their upper limb loss had impacted on both personal and family relationships, in terms of the support that they required and their relationship roles. some descriptions of support were underpinned with a sense of reliance on family members and in some cases feeling a burden. for example, waiswa, describes feeling like a ‘child’: ‘because most of the time they just put food on the table, i have to bend myself to the plate to eat that food. dressing myself is also a challenge, i cannot do it myself. for real am just there like a child.’ for some participants the help received from family members led to feeling a burden or over dependence on families, regardless of them acknowledging that they were happy to help. these mixed feelings and perceptions about the care received from family members is captured by namuli: ‘… okay if they are just helping me, let them out of love and not out of being burdened … i was not used to saying things like “hey do this for me” so i get a hard time from that, it is hard, so i find myself very dependable on others.’ and ‘but there are times i feel like, i over burden him.’ in some cases, shifted family roles had an impact on the participant’s sense of identity; this was described by matovu, ‘it is very hard, we find it very hard to assure someone that you will be able to look after them when you have one hand.’ although several participants were concerned about the amount and impact of the support they were receiving, it was also clear that this support was often viewed positively as comforting and reassuring. musinguzi said: ‘what comforted me the most were the people around me, i didn’t tell people to come see me, they came, comforted me, supported me and that is one thing i have enjoyed, people around me.” batte expressed gratitude to both family and neighbours ‘she [daughter] has done so much to help me, i have many friends, my neighbours have been helping me if it is washing, i wash.’ in contrast, namuli seemed to want to be able to perform certain tasks without support ‘it was bothering us, me, and my husband, he says – but why don’t you no longer call me to scrub you? why don’t you no longer call?’ theme 3: psychological adjustment to living with upper limb loss this theme captures aspects of the psychological response underpinning participants’ ways of adjusting and coping with upper limb loss. this is captured in mbabazi’s reflections describing how she previously felt about her upper limb loss: ‘i would wake up with the hope of having my hand again, it would kill me every time i wake up […] because i would dream of having it.’ this process of adjustment seemed to be aided by the use of a prosthesis becoming part of her identity, in contrast with it initially being viewed as a burden: ‘it was really a burden, but as time went by, i got used to it, so i know that it is part of me, that is me, i cannot do without it, so i had just to put it in my mind that this is me, so the bad way i looked at has stopped.’ (mbabazi) from several participants’ perspectives, an important part of psychological adjustment to living with their limb loss, was the importance of a positive attitude. this was described as a sense of maintaining positive goals, hope and a positive mindset: ‘some need to know that what happened to them should not stop them from achieving their life goals, i would encourage them to keep their hopes high since life continues.’ (namara) and: ‘you know what kills us most is the mindset and if you do not have anything to build your mind in a positive way, you crush slowly’ and ‘the next day family and doctors encouraged me, and i was equally a person with a positive mind, i think i took up their advice.’ (opolot) some participants attributed enduring through the limb loss with the help of their god and friends, for example, namuli described ‘i have friends, i think this has helped me to move my life in a way, god has helped me when i am with people i am used to.’ whereas others like kakuru were able to access counselling from their church leaders: ‘i thought when i got one arm that i will be with one of them, which i see on kampala streets, begging, but eventually i found myself going to church, pastors helped me with counselling and other people, so as of now i can’t say i can beg.’ category 2: productivity and participation participants described productive and leisure occupations that included participation in culture, sports, community, and employment. theme 4: economic participation before the amputation, most participants had occupations with long working hours and physical in nature, for example, fuel tanker driver, banana seller, cleaner, street stall seller, farmer, taxi driver and mechanic. after the amputation, some participants were not able or allowed to continue doing the same job (table 1). the amputation has affected the professional desires of musinguzi: ‘i am learning to do much of the everyday chaos by myself, so i have put aside some professional goals for now.’ nabirye is learning tailoring and surviving the day is still tough: ‘i find it very difficult’, ‘i used that [sewing] machine plus my first-born to repair some people’s clothes and get money for rent and feedings.’ just as with nabirye, other participants also struggle to make ends meet daily. matovu gets on the safari track as a chaperon and said: ‘when we come back, they give like ten thousand and i take it home, that is how we survive, my wife and children.’ while kakande, being unemployed, reported that ‘when money is nowhere to be seen i buy halves [of medicine prescriptions] so that i can live’ and the living situation affecting his sleep ‘i don’t have peace even at night, i only sleep for four hours in my life.’ in contrast, mbabazi having had a difficult job of making and selling pancakes, after the amputation now has a job as a shop keeper with significantly better working conditions: ‘i am a bit relaxed because i sleep enough now [laughs] […] with a rested mind, […] not with a stressful mind whereby i know where am i going to be in the morning and who am i going to sell to, instead of will they be bought [pancakes]?, will they not be bought?’ some participants have experienced discrimination that has affected their employment opportunities. matovu has unstable employment for this reason: ‘sometimes i work sometimes i do not work, because some people despise you because you are lame, therefore, they cannot hire you.’ while namuli perceives employers as not wanting to hire her after recurrent messages of ‘we shall call you’, ‘we still need to finish some errands’ and ‘there was restructuring.’ as opposed to matovu’s friend who encouraged him to concentrate on driving the taxi: ‘we can work together. you can work as a conductor with that one hand. i do not see why you insist on working with the tracks [safari]. with a track, you make only 10 000 but with a taxi you can make 20 000 shillings every day.’ coping with caring for children and employment was a hardship before the amputation, as described by nabirye ‘i used to drive when i was pregnant […]. i used to move with her in the [truck] cabin, driving […] with my baby’. after the amputation, nabirye asked doctors ‘will i be able to support myself?’ and wanted to continue taking care of her children ‘i have young people – my children are still young, they still need my help.’ similarly, nakanjako cares for two children alone after her husband left her after the amputation: ‘i have to look for what they should eat […] i can’t get from my earnings for school fees for the kids, i am the mother and the father.’ in contrast, some participants are being cared for by their children, other family members and friends. waiswa has no wife, and his children help him to get dress in the morning before they leave for school. nalubowa stays with her sister who supports her to study. batte’s wife has employment and supports the household economically and kakande’s friends send him money and ‘the village […] where i grew up and where i work, collect money and send it to me when i am out of money.’ however, the uncertainty of the future caring circumstances is vivid in waiswa’s words ‘my children are growing older, and time will reach when they leave home and go. then who will take care of me?’ theme 5: culture and sport participants described positive and negative experiences of dance, sport, singing and community participation before and after the amputation. namuli sings and sees this activity as part of her social support system ‘so when i am with people, i am a singer […] gospel, i sing from the choir.’ having worked as a dancer in a traditional african dancing company, mbabazi missed dancing after the amputation, but felt inadequate and undesirable: ‘i really wanted to train because i felt losing my life, i needed my life back, so i went to the national theatre, at first i had it on [a cosmetic prosthetic] so everyone didn’t know what was up with me, then i look around at the kind of dances they do, and then i was like ‘no way’, i didn’t see myself dancing those dances without my limb, […] i realised no dance group is going take me on to dance in there group without a hand.’ participating in sport was a desirable activity, with some participants actively engaging in it after the amputation, describing sport as a source of wellbeing. mbabazi jogs in the evenings after work and practises badminton ‘i will stay in badminton forever because that’s where i feel peace of mind, people who understand me, but then out of badminton no one will understand me.’ for kakande, sport defines his life having been a professional soccer player before the amputation ‘when i wake up early in the morning, i go do exercise because i am a person of exercise.’ for musinguzi, amputation has not prevented him from participating in sports ‘i used to enjoy swimming and running, and i still do them.’ tugume practises amputee football and jogging, explaining a typical routine pleasantly ‘in the evening i go for jogging. or if i have match, i train amputee football.’ whereas nantume misses participating in netball ‘i really miss active sports participation and the most game that i miss is netball.’ apart from sport, dancing and singing being enablers of community participation. mbabazi described belonging to a rotary, explaining the positive impact ‘they don’t make me feel different, so it is one other thing that has made me grow and develop a high attitude of positive life.’ however, nabirye and batte described situations in which discrimination prevented them from participating in their communities. nabirye said ‘i am isolated in the family plus the community. i feel bad, but i have nothing to do with that’ and batte explained the contrasting behaviour of friends: ‘i lost some of my friends ever since i lost a limb, sometimes you try calling them and they make your calls busy, others keep telling you that they are not around, yet truthfully, they are dodging you. yet these were men who we used to socialise […] before i became an amputee.’ category 3: living within the wider environment this category captures the experiences of people living with limb loss in the physical and social environment. it includes descriptions of interactions and reactions to peoples responses to disability. theme 6: living in an ableist society with negative attitudes towards people with disabilities participants described a wide combination of experiences of ableist attitudes towards them. according to the un definition, ableism is a value system based on functioning, appearance and behaviours that are considered as standard to live a fulfilling life (special rapporteur on the rights of persons with disabilities 2019). ableism is the conception of ableness, of a perfect body with the implication that disability is the loss of ableness (campbell 2019). ableism lies in systems of life, personhood and liveability; it is not just a matter of ignorance and negative attitudes towards pwds (campbell 2019). in uganda, participants frequently described experiencing heightened pity; their family members denied their abilities and disregarded their ability to learn with the right support, for example, ‘he [father] presumed that i wouldn’t be able to write’ said nalubowa. there were also accounts of pwula being considered outcasts with people withdrawing in shock when greeted with a prosthetic hand and being laughed at. as musinguzi shared: ‘no matter what you lost, you are still alive and living well, but there are people who don’t want to get near you, who see you as sort of an outcast, but they are not so many, the majority mind their own business or they are just happy for me.’ participants persistently referred to ‘normality’ while describing their lived experiences. disabled and non-disabled have the perception that a ‘normal’ person is a non-disabled one, which further reinforces the stigma of disability. in one case the concept of ableism (campbell 2019) is echoed in a participant’s own view of what is ‘desirable’ in society ‘the strong make with all the capabilities is desirable you get it, it’s nature.’ this perception of normal led opolot to feel pressured to change the hook type of prosthesis (which is more functional) to a cosmetic one for the benefit of his family in terms of appearing ‘normal’. in addition, his family members were disturbed by the look of the prosthetic device and encouraged opolot to stop wearing the device. some pwula chose not to engage with other pwula, hinting possible self-stigma ‘i don’t want to feel i belong to the disabled’ (opolot) while others actively seek connection with pwds ‘at our village there is a group of disabled persons which i joined although these are people with different disabilities’ (batte) and are not afraid to say that they are disabled ‘i am disabled’ (kakande). elements of stigma were caused specifically by the association of amputation being a form of punishment, and so pwula were called names such as ‘thief’, as matovu explained: ‘everyone calls you what you are not, that you are a thief, your hand was amputated because you were stealing, that you are lame, all sorts of things like that. all the time you are feeling small.’ or name calling experienced by nantume ‘others say am a witch because men are so much interested in me regardless of my disability.’ the term ‘lame’ was associated with disability and used by people toward participants and by participants themselves: ‘even when you go to functions, they always pick on you, “oh there is a lame person”’ (matovu) and ‘to stay like in the community, they segregate me because now i am a lame person’ (nabirye). these experiences of discrimination could often be upsetting as nantume shared: ‘many discriminate me. such statements hurt me so much to the extent of asking myself whether for them they use different means of transport that are accident free from the one i used that led me to this.’ participants described specific interactions and how people reacted when they first noticed their limb absence: ‘there is coldness, there are scenarios when someone buys from you a couple of times but never notices and then when they see it, they ask shockingly “but how come i have never seen you like that?”’ (nakanjako) opolot described how people reacted when they realised that they were wearing a prosthesis leading to the need to persistently explain their limb loss to strangers: ‘it is not a real hand, so he withdraws in shock, then you try to explain, you say – this is a prothesis, i had an accident – and stuff like that, but it went on and on, each time that would happen you had to explain, imagine if you had 10 people like that in a day, it is quite cumbersome.’ it was found that children would often ask the participants about their limb loss and could range from being viewed as being ‘curious’ to a more difficult and distressing situation: ‘challenges that i got were from young kids, they would come not knowing, they call their other friend and stand staring’ (nakanjako). it was also described that some people even wanted to touch and feel the participant’s residual limb: ‘this part from the bottom above the elbow, when it is merely hanging, someone will see it as having no bone, they desire to touch it, they touch it, they feel it.’ (namuli) people’s assumptions that pwula are not fit, strong or able to work in paid employment were mentioned often. musinguzi described being asked to show his surgical scars to ‘prove his strength’: ‘they even ask me to remove my shirt, that i can show them what the surgery did, but in public it’s a different …, say most people are not used to seeing an old man very strong but without a limb.’ these assumptions impacted on where participants sought employment and revealed the prejudice by people who did not know them ‘they cannot hire you, therefore, most of the time you find that the people who hire you are those that know you already’ (matovu). even if not explicitly stated, there appeared to be a perception by participants themselves that other people would not think they were able to work. some pwula found it difficult to start and preserve intimate relationships. some participants avoided being in an intimate relationship to focus on themselves after the limb loss, for example musinguzi explains: ‘it’s very hard and i am focusing on is improving my own life, so i have shut the door to relationships for now. i would like to have a nice time if i ever marry. when you don’t have a piece of something to bring that strength, you are not so desirable.’ matovu also discussed how they had to assure a potential partner that their limb loss would not affect their ability to care for them: ‘it is very hard to assure someone that you will be able to look after them when you have one hand. to look after her in everything, that is the hardest thing.’ waiswa explained how his relationship had ended because of his limb loss, ‘when i got the accident, my wife ran away from me and left me with 6 children.’ some of the female participants described being eager to date but faced psychological insecurity or lack of self-confidence: ‘guys come to date you, and you have one limb, and you are putting on a long-sleeved shirt, he feels confident talking to you. however, much you fight for the right thing and rights, there are things you cannot take away from the mind, so that is why you see so many people that are physically challenged have kids, but they have no husbands.’ (mbabazi) other participants provided more specific details of the experiences and difficulties they had faced in maintaining relationships: ‘for the last 20 years since i lost my limb, several men have approached me intending just to sleep with me but not to marry, many of them, when you move out with them, they tend to keep a distance as if i am not of the class they should love. yet, behind doors they pretend to love me. whenever i witness that i also distance myself and get out of such relationships. others could even promise to recruit a housemaid to help me with housework, but i still refused after going through the experience of the first two men […]. so deep inside my mind, men do such to me because i am a person with an upper limb loss.’ (namara) theme 7: ways of dealing with social perceptions and reactions this theme presents the ways of reacting or changing behaviour to avoid or manage ableism (campbell 2019). for example, through self-segregation, attempting to hide their disability or seeking to empower their disabled identity despite the hurdle. a key part of managing social perceptions was self-segregation (voluntarily avoiding a range of social situations), as explained by batte ‘i used to go to my relatives and friends’ homes for social events, but i am no longer feeling comfortable to go there.’ this avoidance was also due to not being able to cope outside of their home without their typical sources of support, ‘because who will be there to feed me when that moment of eating food reaches? so, i rather not go there’ (waiswa). in contrast, mbabazi reacted with a positive and empowering approach: ‘especially for us, i wasn’t born this way, so i have to make sure i fight, that’s why i always have to put it on [the prosthesis], like to fight that stigma.’ participants described how they intentionally covered up their limb absence to avoid interactions. covering with a scarf or long sleeves was used regardless of gender. nabirye explains how she wore a scarf all the time regardless of the weather or time of the day: ‘it is difficult for me and at times i keep myself inside the house. even though i come outside like this, i can’t come outside without a scarf. even if it is summer or winter, i must cover myself, even if it’s night i have to cover myself because of that.’ nantume felt frustrated from having to cover her limb loss: ‘i am tired of wrapping up myself with this scarf on this side where i lost the limb.’ being a driver, batte covered his limb loss to try to make clients feel ‘safe’ and to hide the upper limb loss: ‘i drive using the remaining upper limb, but i try so much not for passengers to notice that the person driving them has one limb’ and added ‘passengers will also be feeling safe. i will only need to wear a long-sleeved shirt to cover the prosthesis properly, such that it cannot easily be identified by passengers.’ several participants believed that an important function of wearing a prosthesis was to cover up their limb absence or disability. namara discusses how having access to a prosthesis would hypothetically eliminate the need to wear a scarf to cover up her limb loss: ‘most people who do not know that i am missing a limb, keep asking why i need the scarf on. so, if i manage to get a prosthesis, i believe i will be able to look smart in public and will not need a scarf.’ mbabazi discussed hiding the disability as the main reason for wearing her prosthesis: ‘actually the biggest fear was the first time they were finding out that i don’t have my second hand, it really bothered me a lot, so i think that’s the biggest reason i had to put it on, whether it is hot or rainy or heavy or am sick. i had to put it on because i want them not to feel like they have to make me the centre of attention.’ participants emphasised the importance of being seen with having both arms, as explained by kiyimba ‘actually if you wear it on, someone will see as if you are, having two limbs.’ discussion the contribution of this study is addressing for the first time the lived experience of pwula living in kampala, uganda, which lacks in the literature. from the individual accounts, this paper contributes a picture of what it means to live with an upper limb amputation in uganda, a minority community with a disability that has remained mostly under supported and understudied by the disability research community and corresponding literature. this paper presents three main findings: (1) pwula need psychological and occupational support services which are not available in uganda, (2) pwula want to work but face multiple barriers to employment and limited support, this is combined with complex parenting and caring responsibilities (3) the local ugandan culture and social structures affect in both positive and negative ways the everyday life of pwula. participants described experiences of discrimination, stigma, stereotypes, and prejudice or feeling stereotyped, which has been discussed in an opinion paper and in a report within sub-saharan africa (etieyibo & omiegbe 2016; rohwerder 2018). in this qualitative work, participants shared experiences of discrimination, which appeared to be in favour of able-bodied people (ableism), ubiquitous notions of normality-abnormality. these verbal and non-verbal discriminatory behaviours and interrogative gestures were described as explicit forms of unwanted attention that pwula had experienced. although prosthetic provision is precarious and not necessarily fit for purpose, when pwula are able to access a prosthesis, it is mainly used to hide disability. although there is limited comparable research exploring the views of pwula in low and middle income countries (lmics), in this study the management of ableism by pwula is centred in evasive manoeuvres, such as evading socialising and seeking physical isolation. despite the detailed experiences of a wide range of events, it was found that none of the participants reported confronting responses to innocuous and hostile attitudes towards them nor attempting to affirm their minority identity. no participant reported actively seeking to dismantle the ableist customs. in this study, it was shown that discrimination appeared to impact on various lived experiences, including support post amputation, to preserve or find employment, to preserve family relationships, to establish intimate relationships, to obtain respectful recognition from the wider community and to participate in their community. this appears to be similar to a growing body of qualitative research exploring the experiences of individuals with lower limb absence, who described that the key function of wearing a lower prosthesis was to appear ‘non’ or ‘less-disabled’ and capable of being able to work, as the use of crutches would highlight their disability and affect being able to gain employment (ennion & manig 2019; kam et al. 2015; ramstrand et al. 2021; stuckey et al. 2020). in these studies that focussed on lower limb absence, it was shown that prosthesis use was related to increased self-worth and value in terms of being able to engage in society, which was compared to increased dependence on other people prior to prosthesis use (ennion & manig 2019; ramstrand et al. 2021). this perhaps links to the concept of ‘prosthetically enabled identities’ developed through a qualitative synthesis process (murray & forshaw 2013) and highlights the role of prosthesis in regaining identities, adjusting to limb loss and enabling new identities (järnhammer et al. 2018). experiencing hardship while making ends meet was expressed as a challenge by many participants in this study, especially those with dependants. past work has noted that with the right support such as a professional multidisciplinary team through the coping phase, a growth mindset and a strong supporting community could help to change the negative perception that pwula have of disability (mcdonald et al. 2020). within our study we saw examples of the power of belonging and positive identity traits when participants took part in sports, art, and worship. a study with pwds from three african countries, namely, kenya, uganda and zambia showed that empowering pwds through education and removing barriers such as discrimination at places of work promotes economic success (shakespeare et al. 2019) and that pwula can perceive their ability positively (mcdonald et al. 2020). various participants in this study are struggling to find and secure employment and they do not have access to support. this lack of support is contrary to the ugandan persons with disabilities act (the republic of uganda 2019) and against equity (united nations 2006). only a minority of participants have successful support networks for employment, found within their close social relations (close friends and family). some participants are struggling parents and have additional caring responsibilities (extended family). these participants highlighted the experience of viewing life as difficult and experiencing psychological stress when managing parenting and employment responsibilities. few participants have found suitable and/or healthy employment or someone to take care of them economically after their amputation. participants also reported taking time to cope with the life-changing event of limb loss, heal or adjust to both the physical and psychological trauma and adapt to their new bodies, echoing results from studies about the coping trajectory in pwds (caddick et al. 2019; horgan & maclachlan 2004). consistent with (daniele et al. 2004), we found that pwula who had lost their dominant hands found it particularly hard to adjust to the time it took them to perform tasks. a loss of a dominant hand correlates positively with the delay in response while examining the effect of limb loss during mental simulation of body-part movements (daniele et al. 2004). in addition, loss of a dominant limb increases the errors made while performing a task (daniele et al. 2004). various participants are actively engaging in recreational activities, which are important components for good health and an important domain of functioning in life that is relevant to health and disability (world health organization 2001, 2012). it has been identified that in uganda some women are reluctant to accept help from men and some men are ill-treated if they engage in domestic work (guloba et al. 2018). thus, if the female partner experiences an upper limb amputation, it directly affects the gender-based dynamic. even when male partners are willing and able to adapt, some female participants insisted on preserving the expected socio-cultural norm, regardless of how challenging this is with only one arm and no access to prosthetics or additional support at home. in this study, participants also highlighted the importance and impact of their prosthesis on establishing and maintaining intimate relationships. similar findings were reported in a systematic review of 11 studies exploring the relationship between sexuality and amputation, where it was found that there was an impact of the amputation of a limb on sexuality and sexual function to some degree across all studies (geertzen, van es & dijkstra 2009). however, it is important to note that some of the studies are quite dated now (for example, ranging from 1945 to 2002), were predominantly carried out in higher income settings, and relate mainly to lower limb loss. other than intimate relationships, pwula find motivation in friends, family members, religion, engaging in recreational or leisure activities and their own self-esteem. however, 15 out of 17 of our participants did not actively seek support from, or to support other pwds. previous research has highlighted the importance of psychosocial factors within the adjustment of pwula to limb loss (klarich & brueckner 2014; thomas & siller 1999; wald & alvaro 2004); many pwula seemed to not have undergone this important process of coping and adapting to living with their limb loss (murray & forshaw 2013). this was often described by some participants as a belief that socialising with pwds would make them disabled, indicating that some pwula have internalised ableism as explored by campbell (2008). the accounts of pwula in uganda seem accumulative and recurring experiences of ableism pervading their self-awareness, resulting in distancing pwds from each other while emulating the wider community’s ableist norms (campbell 2008). recommendations for pwula, non-governmental organisations and the ugandan government past work exploring specific social and cultural issues at end user and wider stakeholder levels exists for lower limb prosthetics and has been noted that such factors are often overlooked in the design of prosthetic devices (kam et al. 2015). this study is an invitation to the government and local organisations to help pwula to actively raise their voice through supporting the creation of dpos specific to pwula. without the transformative participation of pwds (white 1996) to gather evidence, policy and practice have no transformative impact. we also suggest that new partnerships are needed between the government and local organisations to help combat ableism through country wide unified activities that consider multiple religions, ethnicity, and tribalism. learnings from mental health and psychosocial support in culturally diverse ugandan refugee camps may be useful (musiimenta, miles & murakami 2020). in addition, past work has shown how academia and disabled people organisations can perform collaborative research in african countries like liberia, kenya, uganda and sierra leone (kett et al. 2019). academics and government staff who hold decision making powers would benefit from specialist knowledge on dpos on research methodologies to gather evidence (kett et al. 2019). implications for policy development uganda ratified the united nations convention on the rights of persons with disabilities and in 2016 reported to the un committee who gave a list of concerns and recommendations (committee on the rights of persons with disabilities 2016). some of the concerns relevant to the findings of this study were as follows: use of derogatory language towards pwds, absence of mechanisms to consult dpos beyond the national council for disability, insufficient legal measures to protect pwds against discrimination and lack of mechanisms to create public awareness of stigmatising cultural practises. another study in 2010 also made similar recommendations to improve legislation and services for pwds in uganda (millward et al. 2005). the experiences shared by pwula in this study indicate that many such concerns identified in 2010 and 2016 have not been resolved. furthermore, in 2019, policy and strategy documents produced by the african union were analysed (lang et al. 2019) and showed that recognition of the rights of pwds is not integrated within implementation plans, budgetary allocations, enforcement mechanisms and disaggregated management information systems. thus, we recommend ugandan stakeholders to increase the efforts to fulfilling the recommendations by the committee on the rights of persons with disabilities from 2016, especially those related to understanding pwds, in preparation for the next periodic report, due in october 2022. strengths and limitations consistent with literature from other lmics, road accidents was the leading cause for amputations among the participants engaged in this study (bezerra de sousa et al. 2017). the limb loss was violent and traumatic for some participants and the details of their experiences is beyond the scope of this article. the findings of this study are a unique insight into the lives of 17 participants and should be viewed as a starting point for future research and understanding of this issue. this study was focussed on kampala, which complements past research looking at the experiences of pwula living in northern uganda (atim et al. 2020; okello et al. 2019). one challenge of research in lmic’s settings is that the expectations of participants need to be managed throughout and after the study (chesser, porter & tuckett 2020). participants had high expectations that had to be clarified throughout this study. recommendations for future research the findings from both phases of this research programme will inform design requirements (kenney et al. 2018). we encourage other countries to perform similar studies to increase evidence of prosthetics needs, so policy makers can speak for pwula and help develop prosthetic services. conclusion the lived experience of people with upper limb absence has been understudied in the literature. the contribution of this study is the documentation of the experiences of pwula living in uganda. we found that those experiences are predominantly negative and are comparable to the concerns that the un committee on the rights of people with disabilities already brought with ugandan authorities in 2016. the recommendations of such a committee appear to have not been implemented or not impacted or not reached yet people with upper limb absence. complex challenges require partnerships and multiple stakeholders, including policymakers and action by the ministry of health. uganda would benefit from a wide campaign to dismantle ableism, support the formation of disabled peoples organisations and the establishment of appropriate services for people with upper limb absence. acknowledgements we, the authors, would like to thank all participants in this study, the department of mulago orthopaedics workshop, henry gizamba, yosiah muhindo, james kirabira, mark kalibbala, carolyn gribble and dilisha patel. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions d.z.m.r. and m.d.-h. conceived and planned the interviews with feedback from r.s., e.m., l.k., c.h. and m.d.-h. b.n. and r.s. carried out the interviews. b.n. led the transcription and translation of audio recorded interviews. d.z.m.r. performed low level coding of the interview transcripts. most of the thematic analysis was performed between m.d.-h. and d.z.m.r., supported by b.n. d.z.m.r. planned the structure of this article, managed its writing and submission. all authors provided feedback on two manuscript versions. m.d.-h., c.h., l.k. and l.a. provided critical feedback. l.k., r.s., c.h., m.d.-h., e.m., and l.a. were fundamental in gaining funding that enabled this study. ethical considerations ethical approval was granted by the university of college london (ucl) (uk) ethics committee (rec7181/005) in april 2019 and makerere university (uganda) school of biomedical sciences higher degrees research and ethics committee in october 2018 (sbshdrec–641). funding information we thank uk global challenges research fund through the engineering and physical sciences research council and national institute for health research (ep/r013985/1) for funding this research. data availability interview transcripts are not available publicly to maintain the anonymity of participants. disclaimer the views expressed in the submitted article are the authors’ own and not an official position of the institution or funder. references ajibade, a., akinniyi, o.t. & okoye, c.s., 2013, ‘indications and complications of major limb amputations in kano, nigeria’, ghana medical journal 47(4), 185–188. armstrong, t.w., williamson, m.l.c., elliott, t.r., jackson, w.t., kearns, 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a/res/70/1. abstract introduction research method ethical considerations findings discussion of findings conclusion acknowledgements references about the author(s) monicca leseyane department of applied languages, tshwane university of technology, south africa peter mandende department of applied languages, tshwane university of technology, south africa mary makgato department of applied languages, tshwane university of technology, south africa madoda cekiso department of applied languages, tshwane university of technology, south africa citation leseyane, m., mandende, p., makgato, m. & cekiso, m., 2018, ‘dyslexic learners’ experiences with their peers and teachers in special and mainstream primary schools in north-west province’, african journal of disability 7(0), a363. https://doi.org/10.4102/ajod.v7i0.363 original research dyslexic learners’ experiences with their peers and teachers in special and mainstream primary schools in north-west province monicca leseyane, peter mandende, mary makgato, madoda cekiso received: 01 feb. 2017; accepted: 06 nov. 2017; published: 05 mar. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: inclusive education requires that the framework within which education is delivered should be broad enough to accommodate equally the needs and circumstances of every learner in the society. this includes learners with disabilities like dyslexia who have been excluded from the formal education system. this article reports the findings of a qualitative study that explored and described the dyslexic learners’ experiences with their peers and teachers in special and public schools in north-west province of south africa. methods: the study adopted a qualitative methodology and used a phenomenology research design. the sample was purposively selected and comprised nine dyslexic learners. all the learners were in public schools previously and were later moved to a special school after being diagnosed as dyslexic. the participants were aged 9–12 years. the researchers conducted one-on-one interviews with the participants and content-analysed the data. findings: the findings revealed that in public schools the dyslexic learners were exposed to ill-treatment by other learners who despised, ridiculed, bullied and undermined them. the findings further revealed that teachers in public schools were not patient with dyslexic learners, did not give them extra attention and that some teachers used negative comments that embarrassed them. conclusion: the article spells out the barriers experienced by dyslexic learners in public schools and also recommends training of teachers so that they know how to deal with dyslexic learners, thereby eliminating the barriers. the study further recommended awareness campaigns among the student body about dyslexia. introduction south africa followed international trends in accordance with the social rights discourse and adopted inclusive education. subsequently, the policy document, education white paper no. 6 (2001), was developed, and it outlined and accepted its responsibility to provide a supportive inclusive education environment for learners with special needs (sukhraj 2006). in this context, inclusion is broadly understood as the process by which learners who previously might have been taught in a separate special education system because of the barriers to learning they experience would now be taught in regular schools (walton et al. 2009). similarly, olagboyega (2008) believes that inclusive learning states that learners with learning difficulties, such as dyslexia, do not necessarily require specialist additional support in order to gain access to the curriculum but the process of teaching and learning needs to be broadened so that such learners can be included within it. however, prinsloo (2001) and peters (2007) are of the view that despite the introduction of inclusive education policy in south africa, it is clear that a number of groups remain vulnerable. these include children with disability and those children who for a variety of reasons experience barriers to learning. this idea is echoed by selvan (2004) in mweli and kalenga (2009) who observes that the majority of learners who experience learning difficulties or are physically disabled have negative experiences within the school environment. selvan further states that these learners are being laughed at by their peers and are labelled and excluded in peer-group tasks and activities assigned in the classroom. moreover, bhengu (2006) found that children with disabilities are not easily accepted in regular classes. it is against this background that the current study seeks to explore and describe the dyslexic learners’ experiences with their peers and teachers in special and public schools. specifically, this study explores the classroom experiences of dyslexic learners with a view to establishing if the classroom environment in public schools is conducive for them to learn as stated in the inclusive education policy. it is assumed that having this knowledge would assist the inclusive education implementation strategy by identifying the needs of the dyslexic learners and therefore devise means to address them. in addition, hoskins (2015) points out that the results of research on dyslexic learners is likely to equip professionals such as psychologists, medical practitioners and therapists, researchers and adults who have dyslexic children. the vast amount of research on the implementation of inclusive education has focused on teacher preparation to teach the learners with disabilities (sukhraj 2008; walton et al. 2009) and the suitability of the schools’ infrastructure for such learners. hoskins (2015) believes that the bulk of research focuses on identification, causes and assessment (burden 2000), while others focus on the effects that dyslexia has on self-esteem (alexander-passe 2006; gibson & kendell 2010; glazzard 2010). however, davie in burden et al. (2005) is of the view that a neglected source of valuable information regarding the effectiveness of educational policies and interventions needed for learners with special needs has been the voices of these learners themselves. justifying the importance of the learners’ voice, burden et al. (2005) state that the importance of the voice of the learners being used has been indicated by many researchers, claiming that school experiences need to be told by the learners while still in school so that their emotions, challenges and needs are understood. in addition, glazzard (in hoskins 2015) points out that the voice of the learners with dyslexia can be used to discover the ways in which schools and teachers can more effectively meet their needs. few studies have focused on the classroom experiences of the dyslexic learners with their peers. among the few studies is the study conducted by hoskins (2015) on the experiences of grade 6–9 dyslexic school learners in south africa. definition of dyslexia there are numerous definitions of dyslexia by different authors. dyslexia is a specific learning disability that is neurobiological in origin. it is characterised by difficulties with accurate or fluent word recognition and by poor spelling and decoding abilities. these difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction (lyon et al. 2003). in addition, stanovich and siegel in o’brien, mansfield and legge (2005) state that a phonological processing deficit impedes a child’s ability to develop graphene-phoneme correspondence rules, and to decode words. the international dyslexia association (n.d.) is of the view that prior research has focused more on the reading than the spelling problems of learners with dyslexia. they point out that written spelling also poses problems to learners with dyslexia. olagboyega (2008) challenges the definitions that view dyslexia as just a problem and suggests that dyslexia be defined in terms of differences in cognition and learning rather than deficits. subsequently, olagboyega defines dyslexia as a complex neurological condition which is constitutional in origin and may affect oral language skills, motor function, organisational skills and numeracy. symptoms of dyslexia moats et al. (2010) identify the symptoms of dyslexia. they state that the primary symptoms of dyslexia are inaccurate or slow printed word recognition and poor spelling problems that in turn affect reading fluency, comprehension and written expression. they further point out that other types of reading disabilities include specific difficulties with reading comprehension or speed of processing (reading fluency). in contrast, olagboyega (2008) believes that the characteristics of dyslexia may include a discrepancy between ability and standard of work produced, a discrepancy between intelligence and ability to learn, a problem with memory and word retrieval, a problem with speed of reading and processing meaning often because of an inability to break down words morphologically. he also mentions the difficulties with spelling even of an easy word as one of the characteristics of dyslexia. he further points out that such spelling difficulties include misrepresentation of the sound, for example, ‘pad’ for ‘pat’; wrong word boundaries, for example, ‘firstones’ for ‘first ones’; wrong syllabification, for example, ‘rember’ for ‘remember’; wrong doubling of letters, for example, ‘eeg’ for ‘egg’; intrusive vowels, for example, ‘tewenty’ for ‘twenty’; ‘b’, ‘d’ confusion, for example, ‘bady’ for ‘baby’; and letter reversal, for example, ‘lentgh’ for ‘length’ or ‘tow’ for ‘two’. in addition, lynn (2000) is of the view that dyslexic learners sometimes feel very different from their peers simply because they may be unable to follow simple instruction, which for others seems easy. the impact of dyslexia on reading and writing the ability to read and write is recognised as being one of the most fundamental of the core skills contributing to academic achievement, lifelong learning and sustainable development (trudell et al. 2012). however, learners with dyslexia find it difficult to achieve or obtain this goal as every subject requires some reading and writing. specifically, the regents of the university of michigan (2016), in their recent research, are of the view that dyslexia makes it difficult for learners to master the following skills which are crucial to the learning process: access to written texts, reading fluency, spelling, organising information, following written directions and sequencing information. they further point out that as a consequence of their reading difficulties, learners with dyslexia are forced to compensate for their weaknesses by following their peers, verbally processing information, relying on rote memorisation and using hands-on or experiential learning contexts. accounting for the problems of dyslexia that are related to the learning process, asiko (n.d.) who is the chief executive of the non-profit strive international that seeks to improve the educational experience of learners with dyslexia in africa claims that in south africa 1 in 10 people are dyslexic. thus, approximately 5 million south africans are struggling with literacy problems in school or at the workplace. accounting on the problems of dyslexia to learning, lynn (2000) claims that with an ever increasing emphasis on education and literacy, more and more children and adults need help in learning to read, spell, express their thoughts on paper and acquire use of grammar. she further states that dyslexic children who find the acquisition of these literary skills difficult can also suffer much anguish and trauma when they may feel mentally abused by their peers within the school environment, because they have a learning difficulty. dyslexia affects the reading process at two levels, that is, decoding and reading comprehension (gough & turner in pirttimaa, takala & ladonlahti 2015). in addition, pirttimaa et al. (2015) argue that dyslexia is mainly caused by problems in phonological coding and the persistence of poor phonological skills. they further point out that problems with phonological decoding lead to difficulties in connecting spoken and written words. this idea is supported by elbro and scarborough (2004) who state that problems with phonological decoding and other challenges in phonological ability seem to be the core deficit in dyslexia. ransby and swanson in pirttimaa et al. claim that better reading achievement is associated with better phonological awareness and more fluent rapid naming. they further point out that problems with reading comprehension seem to include persistent deficits not only in word recognition skills but also in vocabulary, working memory and listening comprehension. the access ability centre (n.d.) believes that learners with dyslexia also experience problems with composition. they believe that this problem may be accompanied by difficulty with spelling and handwriting and as a result learners may choose words they can spell rather than those they want to use. the access ability centre further observed that learners with short-term memory problems may have difficulty transcribing a mentally composed sentence, thus much backtracking is required which disrupts the flow of thought. in a study conducted by hudson, high and otaiba (2007), they observed that children with dyslexia often show two obvious difficulties when asked to read text at their grade level. first, they will not be able to read as many of the words in a text by sight as average readers. they further state that there are always many words on which the dyslexic learners stumble, guess at or attempt to sound out. second, hudson et al. observed that writing letters and words backwards are common in the early stages of learning to read and write among average dyslexic learners. voices of dyslexic learners davie in hoskins (2015) believes that a neglected source of value information regarding the effectiveness of educational policies and interventions needed for learners with special needs has been the voices of these learners themselves. this view is supported by many researchers like bearne (2002), casserly (2011) and glazzard (2010). according to burden (2000) in hoskins (2015), the bulk of research focuses on identification, while other researchers focus on the effects that dyslexia has on self-esteem. however, gibson and kendall (2010) in hoskins (2015) are of the view that despite all the research that has already been carried out with dyslectic learners, literature using the voice of learners about their school experiences is scant and limited, hence the need for the current study. the scantiness of information about the experiences of the dyslexic learners is further supported by nugent (2008) and humphrey (2003). in addition, gunnel ingesson in hoskins (2015) believes that research on learners with dyslexia is frequently based on parent–teacher ratings and rarely based on accounts of the affected persons themselves. therefore, the current study seeks to answer the following research questions: how do dyslexic learners relate with their peers and teachers in public schools? how do dyslexic learners relate with their peers and teachers in special schools? which learning environment do dyslexic learners believe to be conducive between public and special schools? problem statement murungi (2015) points out that the salamanca statement and framework for action proclaimed that the regular schools with inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities, building on inclusive society and achieving education for all. however, the results of the study conducted by nugent (2008) reveal that learners in special schools and reading units seem to be happier and have more positive experiences than those in mainstream schools. this view is reiterated by riddick (2010) who observed that learners with special needs attending mainstream schools are more likely to experience bullying from their peers. in the current study, the focus is on the experiences of dyslexic learners about both their peers and teachers in special and mainstream schools. rationale of the study research has shown that dyslexic learners require a classroom environment which is predominantly a learning environment where they can feel comfortable and develop confidence and self-esteem (lynn 2000). therefore, such an important resource as learning environment should be left to the dyslexic learners to identify. subsequently, the current study sought to take the dyslexic learners’ voices into consideration in an attempt to understand and prescribe a learning environment for the dyslexic learners. having this valuable information is likely to assist policymakers in designing appropriate and informed policies, and the department of education could design appropriate interventions and also empower teachers on how to handle dyslexic learners in their classrooms. research method design the study was qualitative in nature, and it followed a phenomenological research design. cohen, manion and morrison (2007) define phenomenology as a theoretical point of view that advocates the study of direct experience taken at face value and one which sees behaviour as determined by the phenomena of experience, rather than by an external, objective and physically described reality. in addition, groenewold (2004) states that phenomenology aims to accurately describe the phenomenon, remain true to the evidence and understand it from the perspectives of the people involved. this research design was felt relevant for the current study as it allowed the researchers to focus on the subjectivity of the viewpoints and experiences of the dyslexic learners as they were viewed as being the best authorities of their lives. subjects the sample consisted of nine dyslexic learners. these learners were purposefully selected as they were formally diagnosed with dyslexia by psychologists in their previous schools before joining the special school and as such all the respondents were aware of their condition. the learners were enrolled for grades 3 and 4 at a special school together with learners with other challenges, including visually impaired learners and physically challenged learners who had learning challenges. the sample consisted of three girls and six boys and their ages ranged from 9 to 12 years. the mother tongue of all the respondents was setswana. instrumentation semi-structured interviews were used in order to get information from the respondents. according to hall (2017), semi-structured interviews use an interview guide with some questions developed in advance and also allow the interviewer to stray from the interview guide, asking follow-ups as the interviewer believes appropriate. this type of interview was chosen because it is an easy, reliable method; both persons can see one another and if the respondent finds it hard to understand the question, time and space allow the researcher to rephrase the question without both of them being under pressure. data analysis the recorded interviews were transcribed and translated into english. one of the researchers who spoke setswana translated the interviews back into setswana in order to eliminate inconsistencies. after the researchers had satisfied themselves that the transcript was accurate, they made four copies of it and independently coded the data. after coding the data, the researchers held a meeting where they discussed the themes and reached a consensus on five themes. ethical considerations the clearance certificate to conduct this study was granted by the tshwane university of technology’s (tut) faculty committee for research ethics-humanities (fcre-hum). this committee is a subcommittee of the senate committee for research ethics. the tut research ethics committee is registered with the national health research ethics council (rec-160509-21). the clearance certificate was submitted to the school principal who later granted permission to one of the researchers to conduct research at the identified school. as already mentioned, the respondents were aged between 9 and 12 years, which meant that the researchers had to seek permission from the parents or guardians. in the consent letter, the purpose of the study and the rights of the respondents were explained. after the parents or guardians had allowed learners to participate in the study, one of the researchers whose mother tongue is setswana scheduled an appointment with the school principal. the dyslexic learners were identified with the assistance of the educational psychologist based at the special school. the researcher interviewed each respondent for about 30 min in their mother tongue. the researcher explained the purpose of the study and sought permission from the respondents to record the interview, which was granted by all interviewees. all respondents were interviewed in a day. findings relationship between dyslexic learners and their peers in public schools the dyslexic learners painted a gloomy picture about the relationship with their peers in public schools. they indicated that many learners in public schools did not understand their problem as dyslexic learners. as a result, when they battle to read and write, they become the centre of attraction among the normal learners. the dyslexic learners mentioned that very few learners in the public school sympathised with them, but the majority teased and laughed at them. this attitude made them look inferior to other learners. the majority of the dyslexic learners felt embarrassed by the fact that they were different from other learners in terms of reading and writing performance. being different made them uncomfortable and they lost confidence in themselves. this negative attitude was facilitated by the negative comments they received from their peers emanating from the fact that they struggled a lot with reading and writing. they further mentioned that when they were grouped by their teachers in class they felt embarrassed as their peers sometimes would like them to give feedback on behalf of the group. in such situations, they felt that their failure to read and write properly did not only affect them but also their peers. they also mentioned that in public schools they were bullied by other learners as they looked inferior as far as their academic performance was concerned. one respondent said: ‘when i was at public school my peers used to make me feel stupid. when i struggle to read or mispronounce words they would laugh at me. this worried me a lot as i was the only one in class experiencing this problem. as a result i decided to isolate myself so as to avoid embarrassment. even at home i used to isolate myself from playing with other children since i had developed a very low self-esteem.’ (participant 4, male, grade 3) on the same question, another respondent mentioned the following: ‘other learners used to judge me because they did not understand my problem. they made me feel like blaming myself and yet i did not choose for myself to have these challenges. the situation was worse when it came to group work. my group members would force me to give feedback representing our group. this was a strategy to attract everybody’s attention to my challenges as the whole class would laugh at me.’ (participant 1, female, grade 4) another respondent said: ‘observing other learners reading properly was frustrating. this made me feel less than other learners in class. my major problem was with spelling, especially english words. my problem was better in the mother tongue.’ (participant 9, female, grade 3) relationship between dyslexic learners and educators in public schools the dyslexic learners complained about the manner in which they were treated by the majority of teachers in public schools. they mentioned that teachers were not patient with them. they felt that their teachers did not give them extra attention but treated them like other learners in the classroom. they felt that teachers in the public school did not understand that they have learning challenges and were different from other learners and therefore needed special attention. they further mentioned that some teachers used negative comments that embarrassed the dyslexic learners. one learner said: ‘in my previous school some teachers used to be angry and punish me when i failed to read and write properly. they seemed not to understand that i had a challenge. they thought that i was stupid in class and i was there to create problems for them. they also felt that i was holding back the class as they were no longer moving at their normal pace in an attempt to accommodate me.’ (participant 2, male, grade 4) on the same question another learner said: ‘teachers used to ridicule me in front of other learners. they would ask me to read alone while other learners were listening and this embarrassed me. what frustrated me most was to fail to imitate the teacher when she was modelling reading for me. as she was paying attention to me some learners would feel bored and tease me during break.’ (participant 8, female, grade 3) responding to the same question, one learner said: ‘i did not like the manner in which i was treated by the majority of teachers. they made me feel inferior and stupid. i did not receive any support from them. as a result i used to bunk school because i was not happy at all. at some stage i thought of dropping out but my parents promised to take me to a special school.’ (participant 6, male, grade 3) relationship between dyslexic learners and their peers in special schools dyslexic learners expressed satisfaction about their relationship with their peers in special schools. they emphasised that the very fact that there were many children like them in such schools made them feel comfortable. in special schools, they did not see themselves different from other learners as used to be the case in public schools. other students seemed to understand their challenge and did not ridicule them. instead, they received support from their peers. the fact that they were not different from other learners in their classroom made them feel normal. one learner said: ‘i have been here for 6 months and i am comfortable because my peers recognise me as a human being. that makes me feel comfortable and i have regained the confidence i lost when i was in a public school. other learners do not laugh at me here.’ (participant 8, female, grade 3) responding to the same question, another learner said: ‘other students are patient with me. they seem to understand what i am going through and the very fact that i am not the only one with this challenge makes me feel comfortable. there are many of us here who battle with reading and writing and that makes me feel not different.’ (participant 6, male, grade 3) on the same question, another learner said: ‘i am happy with the treatment and respect i receive from other learners here. they do not ridicule nor bully me as it used to be the case in public schools.’ (participant 2, male, grade 4) relationship between dyslexic learners and educators in special schools the respondents expressed satisfaction with the manner they were treated by their teachers in a special school. dyslexic learners felt that teachers in special schools understood their challenge and as such were patient with them. they also observed that teachers at a special school knew how to deal with their challenge as compared to teachers in public schools. responding to the question, one learner said the following: ‘teachers treat us well here. since i came to a special school i am feeling well and my academic performance has picked up because sometimes i receive extra lessons.’ (participant 3, male, grade 4) on the same question, another learner said: ‘in the current school educators treat me normal like other learners but in the previous school i did not receive good treatment and that was the reason why i ended up losing interest in school. another important thing is that teachers at special school do not see dyslexia as a challenge, they know how to deal with dyslexic learners. they make me feel welcome as i spend more hours with them than at home.’ (participant 7, male, grade 4) learning environment that dyslexic learners prefer the dyslexic learners preferred a special school environment to that of a public school. they explained that the public school environment was not friendly to them and did not allow them to prosper in their academic endeavours. they pointed out that the public school environment made them feel different from other learners, whereas the special school environment made them feel like normal human beings. they mentioned that in special schools they had the opportunity to interact with other dyslexic learners, something that did not exist in public schools. one learner said: ‘based on my experience with a public school, i feel that the special school provides a better learning environment because it recognises me as a human being who has potential to learn. moreover, the special school environment helps me develop a positive self-concept whereas the public school made me feel inferior to other human beings.’ (participant 5, male, grade 3) responding to the same question, another learner said: ‘i think special school environment provides a conducive learning environment than public learning environment. i am saying this because my academic performance improved while attending a special school. here, i feel confident and optimistic that i will be able to achieve the academic goals i have set for myself.’ (participant 7, male, grade 4) discussion of findings the results of the study revealed that the relationship between the dyslexic learners and their peers was negative in the public school. these learners were exposed to ill-treatment by other learners who despised, ridiculed, bullied and undermined them. when dyslectic learners failed to read and write properly, they became objects of ridicule by their classmates who could read and write better than them. this finding is supported by selvan (2004) in mweli and kalenga (2009) who observed that the majority of learners who experience learning difficulties or are physically disabled have negative experiences within the school environment. selvan in his study further observed that these learners were being laughed at by their peers and were labelled and excluded in peer-group tasks and activities assigned in the classroom. this finding is echoed by bhengu (2006) who found that children with disabilities were not easily accepted in regular classes. the finding on the negative relationship between dyslexic learners and their peers is further confirmed by nugent (2008) who observed that dyslexic learners were exposed to distress, failure and in many cases bullying. the results further revealed that because of the suffocating situation the dyslexic learners went through in public schools, they developed a negative self-concept. this finding is echoed by riddick (2010) who argued that as dyslexia affects self-esteem, learners with reading and writing difficulties may develop social and emotional problems, including psychiatric problems. this finding is also supported by burden (2000) who conducted a study with 50 dyslexic boys whose self-efficacy increased while attending a special school for children with dyslexia in comparison to the regular school they had previously attended. it is also noteworthy that dyslexic learners were not satisfied with the manner in which they were handled by teachers in public schools. specifically, they complained that teachers in public schools were not patient with them, did not give them extra attention and that some teachers used negative comments that embarrassed them. this finding is supported by thompson (2013) who claimed that the level of teacher awareness of special needs education and in particular dyslexia needs to be developed. the findings of the study further point to a positive relationship between dyslexic learners and their peers in a special school. this is partly owing to the fact that in special schools, the dyslexic learners interact with learners who are also dyslexic and therefore do not see themselves as different. this finding is echoed by nugent (2008) who observed that the relationship between dyslexic learners and their peers who attended public school was negative although those who were in a special school setting were likely to have positive experiences with friends and developed a feeling that they were all in it together. the results further revealed a positive relationship between dyslexic learners and their teachers in a special school setting. the dyslexic learners felt that teachers in a special school understood their challenges and as such were patient with them. they also observed that teachers at a special school knew how to deal with their challenges as compared to teachers in public schools. olagboyega (2008) is of the view that a general awareness of the dyslexic continuum of characteristics is essential to the teacher as these characteristics may include a discrepancy between ability and standard of work produced and discrepancy between intelligence and ability. the findings of this study further revealed that the dyslexic learners preferred a special school environment to that of a public school. they associated the special school environment with academic success. this finding is supported by lynn (2000) who argued that in a positive and encouraging environment, a dyslexic child will experience the feeling of success and self-value. this finding is further supported by nugent (2008) who observed that learners in special schools and reading units seemed to be happier and had more positive experiences than those in mainstream schools. a similar finding was observed by hellendoom and ruijssenaars (2000:233) in hoskins (2015) who noted that one learner said the special school gave him a sense of himself and some sense of who he could be. conclusion despite the fact that education and white paper 6 (2011) advocates the inclusion of learners with disability in regular schools, the findings of this study revealed that the existing public school conditions did not consider the needs of learners with disabilities, including dyslexic learners. based on the experiences of dyslexic learners, they find comfort and recognition in special schools rather than in public schools. the findings of the study revealed that dyslexic learners felt neglected and undermined in public schools by both their peers and teachers. paying attention to the voices of dyslexic learners, the study has revealed that the dyslexic learners prefer a special school environment to that of a public school. recommendations based on the findings of the study, the authors recommend that the government should play an important role in creating a learning environment in public schools that is conducive for learners with dyslexia. specifically, teachers should be equipped with sufficient skills, qualifications and competencies relevant to deal with dyslexic learners. another important requirement is to make other learners aware that although dyslexic learners have a challenge with reading and writing, they can also be successful academically, just like any learner. this is important so that they accept and support the dyslexic learners instead of ridiculing them. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.l. was responsible for the introduction and collected and analysed the data. p.m. was responsible for 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https://www.google.co.za/?8fe-rd=rc&ei=pukfwly6be-08wf2yzsoaw=q=the+reger thompson, l.s., 2013, dyslexia: an investigation of teacher awareness in mainstream high schools in the western cape, university of south africa, pretoria. trudell, b., dowd, a., piper, b. & bloch, c., 2012, early grade literacy in african classrooms: lessons learned and future directions, association for the development of education in africa, viewed 12 november 2016, from www.adeanet.org/triennale/triennalestudies/subtheme1/15 04 trudell_ en walton, e., nel, n., hugo, a. & mller, h., 2009, ‘the extent and practice of inclusion in independent schools in south africa’, south african journal of education 29, 105–123. https://doi.org/10.1590/s0256-01002009000100007 abstract introduction research methodology results discussion conclusion acknowledgements references about the author(s) lieketseng ned centre for rehabilitation studies, stellenbosch university, south africa theresa lorenzo department of health and rehabilitation sciences, university of cape town, south africa citation ned l., lorenzo t., 2016, ‘enhancing public sectors’ capacity for inclusive economic participation of disabled youth in rural communities’, african journal of disability 5(1), a189. http://dx.doi.org/10.4102/ajod.v5i1.189 research project no.: hrec ref 341/2013 original research enhancing the public sector’s capacity for inclusive economic participation of disabled youth in rural communities lieketseng ned, theresa lorenzo received: 13 apr. 2015; accepted: 15 feb. 2016; published: 22 july 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the capacity of service providers in the public sector to deliver inclusive services is essential to implement strategies that will allow the full participation of disabled youth in development opportunities in the rural context. objectives: this article sets out to describe the capacity of service providers in facilitating the participation of disabled youth in economic development opportunities. method: an instrumental, embedded single case study informed the research design. the sample consisted of five disabled youth, four family members and six service providers. data was gathered through in depth individual interviews and focus group discussions. data analysis was done inductively and thematically. in the discussion, the interpretation used organisational capacity elements as a framework. results: the findings indicate a perception of disability as a multifaceted and challenging issue with different orientations to service delivery, based on the understanding of the impairment and disability. there is a strong focus on impairment and negative attitudes. discussion: an asset-building approach could facilitate awareness of the capacities of disabled youth and thus shift negative attitudes to enabling attitudes. the vague strategies for youth and women reflect an organisational attitude that seems non-committal to its core agenda of inclusive development, which would ensure equal opportunities for participation by disabled youth. conclusion: an appreciative process of facilitating a deeper understanding of the needs of disabled youth would assist service providers to reconceptualise disability within an expansive framework of equal opportunities and active citizenship. introduction being young and poor in south africa is already tough. adding a disability to that equation multiplies the difficulties. apart from various practical challenges to mobility and accessibility, the prospects disabled youth have for skills development and finding work are often bleak (cramm, lorenzo & nieboer 2013). the world disability report states that disability affects as much as 15% of the world population (who 2011). whilst this figure is highly uncertain and clearly influenced by the prevailing definition of disability, it is nevertheless an important indication of the enormity and impact of disability on individuals, families, local communities and societies (eide, khupe & mannan 2014). the day-to-day experiences of disabled youth reinforce their sense of social exclusion and isolation. it has been found that lower rates of labour market participation are one of the important pathways through which disability may lead to poverty (braitwaite & mont 2009; hoogeveen 2005; scott & mete 2008). across the world, several studies indicate that working-age disabled people still experience significantly lower employment rates and much higher unemployment rates than persons without disabilities (lorenzo et al. 2013; mitra & sambamoorthi 2006; mete 2008). in south africa, the employment rate is very low. whilst youth are most affected by minimal employment opportunities (with a 25% unemployment rate in the fourth quarter of 2010; stats sa 2011), disabled youth – specifically those living in rural areas – suffer the most (with a 12.4% employment rate for disabled people; stats sa 2011). to address the low rates of employment for disabled people, many countries have laws prohibiting discrimination on the basis of disability, with the aim of improving access to the formal and informal economy and widening social benefits. policy context the south african government has developed legislation and policies that emphasise participation and inclusion of people with disabilities. firstly, the south african constitution identified the need for the integration of disabled persons, thereby acknowledging their rights to employment (howell, chalklen & alberts 2006). secondly, both the employment equity act and the skills development act of 1998 (department of labour 1998a, 1998b) advocate for work opportunities to be created for disabled people. the policies were established in recognition of the discriminatory employment practices that resulted in discrepancies in employment and income in south africa during the apartheid era. the aim of these acts was to promote the constitutional rights of equality, eliminate unfair discrimination in employment and achieve a diverse workforce broadly representative of the people. for example, the increase in access to employment in the open labour market, development of small, medium and micro-enterprises and entrepreneurship projects are employment strategies that should always be considered (lorenzo, van niekerk & mdlokolo 2007). furthermore, disabled youth should have the same access to social security measures as others in the community (maart et al. 2007; un 2006). other policies such as community-based rehabilitation (cbr) guidelines (who 2010) and the united nations convention on the rights of persons with disabilities (uncrpd) (un 2006) promote the participation and inclusion of disabled persons in employment opportunities, particularly in developing countries. embedded in these policies are the principles of participation and inclusion that should inform service providers when implementing these policies. to include disabled persons into mainstream society, an understanding of the mechanisms contributing to the disadvantaged situations of disabled people globally is needed (eide et al. 2014). barriers to inclusive economic empowerment across different provinces in south africa, the major barriers to employment for disabled youth include poor health, minimal financial resources, inadequate skills and lack of job opportunities (cramm et al. 2013; grut et al. 2009; lorenzo & cramm 2012; lorenzo, motau & chappell 2012; lorenzo et al. 2013). these studies also identified minimal provision of mobility technology, communication devices and self-care products; poor retention systems for education and training for skills development to ensure employability; poor dissemination of information and use of communication systems; and inadequate support from family, which was further compounded by the discriminatory attitudes of community and those in authority. capacity of service providers for service delivery the abilities and competencies of service providers in the public sector to deliver inclusive services are essential to ensure the full participation of disabled youth in the rural context. although some disabled people are supported by social security (a disability state grant provided by the government in the form of cash transfers), they still have limited economic empowerment opportunities. in seeking to address disabled people’s opportunities for participation, hess-april (2006) and philpott (2004) argued that networking and intersectoral collaboration are essential in ensuring successful disability awareness and inclusion and for strengthening referral systems. service delivery systems and structures remain fragmented, and available resources have limited impact because many service providers do not realise the need for systematic efforts to adequately prepare disabled persons for participation in the economy (duncan, sherry & watson 2011). several factors influencing service delivery have been reported, namely, insufficient training and teaching about disability concepts and policy, which would enable district staff to put policy into practice; a poor basis of learning and information from which service providers operate; insufficient knowledge to interpret policy at the level of service provision; limited provincial support and minimal resources; and poor cross-sector collaboration due to limited awareness of official counterparts in each of the sectors (duncan et al. 2011). in addition, some disabled youth have reported being turned away from facilities by practitioners and service providers who are not trained to deal with them, whilst service providers and support services fall short of their needs and often do not take cognisance of policy information (meyiwa 2010). saloojee et al. (2006) investigated the unmet health, welfare and education needs of disabled children in a poor part of south africa. their findings revealed that caregivers have limited money to access services due to distances and inadequate awareness and knowledge of the correct healthcare and available services as major reasons for not utilising these services. doctors and nurses have narrow awareness of the opportunities for referral to rehabilitation services where disabled youth could gain access to resources to promote their development (lorenzo & cramm 2012). these studies indicate that there has not been much change regarding economic inclusion for disabled youth. justification for the study despite government efforts to reintegrate disabled people into the economic environment, booth and ainscow (2002) reported that, globally, young adults with disabilities remain excluded from full participation in society and from economic independence. unemployed disabled people continue to struggle to engage equally and rightfully in society (howell et al. 2006). due to limited access to employment, disabled youth experience socio-economic exclusion (maart et al. 2007; lorenzo et al. 2013). moreover, despite the uncrpd’s positive influence on other international, regional and national policies integrating disability as a human rights issue, there are problems with implementation (eide et al. 2014). using kaplan’s (1999) intangible elements of organisational capacity, this article explores the capacity of service providers within the public sector to facilitate the economic participation of disabled youth in a rural village of cofimvaba in eastern cape, south africa, as one area needing attention. the intangible elements of capacity (kaplan 1999) are conceptual understanding; organisational attitudes; and the vision and strategies employed by service providers in promoting the inclusion of disabled youth in economic empowerment opportunities. research methodology a qualitative case study design was chosen. the case study approach provides a ‘systematic and in depth investigation of a particular instance in its context in order to generate knowledge’ (rule & john 2011:4), as it enables holistic and meaningful, context-related knowledge and understanding about real-life events (yin 2009). this tradition of qualitative inquiry was deemed appropriate, as it allowed the participants to be bounded as cases whilst situating each group in its historical, political, economic, as well as socio-cultural contexts, demanding multiple sources of data (stake 2008). the type of single case study adopted was an instrumental, embedded single case study approach (stake 2005), which has more than one unit or subunit of analysis. in this study, the service providers from the departments of education, agriculture, health and social development and local government (the municipality), disabled youth and their families within cofimvaba, intsika yethu municipality, were bounded as a single case to explore how the service providers facilitated the participation of disabled youth in economic opportunities. setting cofimvaba is a rural area in the intsika yethu municipality in the eastern cape, south africa. the village is 79 km east of queenstown on the route to butterworth, in thembuland. it has a high rate of unemployment. the district is comparatively poor, with 75% of its people living below the poverty line (department of provincial and local government 2003). the recent census (statistics south africa 2011) reported that there were 8783 disabled people (with various forms of impairment) in cofimvaba, constituting 7.6% of the total population. only 11% of disabled youth are employed and earning a salary, with approximately 62% considered as economically inactive (statistics south africa 2011). all the service providers are located in the town of cofimvaba. each service provider is allocated a surrounding village and is responsible for supporting and assessing the needs of the village and monitoring any projects initiated and supported by various organisations. service providers have to travel distances on gravel roads to access the communities using government transport. sample purposive sampling was used to select service providers, for their knowledge and insight of service delivery in this community, and disabled youth and their families as the users and beneficiaries of these services (rule & john 2011). this article focuses on the sample, which consisted of six service providers, five disabled youth and four family members. the service providers, all with two or more years’ experience, included three community workers, one social development practitioner, one health professional and one special unit manager of the local municipality. the findings on disabled youth and their families will be reported to communicate their perspectives of the capacity of service providers at ground level, as they are the beneficiaries of the services delivered by these service providers. the local councillors were invited but were not available to give their perspectives. initially, disabled youth were contacted from a database of disabled youth compiled from a phase 1 survey of disabled youth in rural areas (dyra) carried out in cofimvaba in 2011. due to difficulties locating most of the youth in the community, snowballing was then used: the two disabled youth located referred the researcher to other disabled youth they knew within the community. each disabled youth (two females and three males) then came with a family member (two mothers, one grandmother and one father) who volunteered to be part of the study. all disabled youth and family members were unemployed community members from one of the villages in cofimvaba. although the inclusion criteria of disabled youth was intended to permit examination of both employed and unemployed disabled youth in order to draw an analysis of barriers and facilitators from the success stories of employed youth and the stories of those who could not find working opportunities, those who were already working had moved out of cofimvaba. moreover, the majority of disabled youth had either an intellectual or sensory disability, implying that youth with mobility and psychosocial disabilities may be more transient, moving to other cities to look for employment. data generation methods multiple data generation methods were utilised to develop a thorough understanding of the case (yin 2003). this article reports data from the individual in depth interviews with service providers, focus groups interviews with the disabled youth and their families, and a reflective journal that was kept throughout the research process by the lead author as part of her postgraduate qualification in disability studies. the data generation process took approximately 3 months. the focus groups with disabled youth and family members took place in a community hall. a set of guiding questions were used to initiate the discussion. the interaction in the group allowed for observation of similarities and differences between families’ opinions and experiences (morgan 1997) in supporting their disabled daughters and sons in accessing development opportunities, as well as for understanding the support that they, as the families of disabled youth, required (and got) from service providers. the service providers chose individual interviews in preference to focus group discussions and were each interviewed in their own workplaces. the data gathered from these individual interviews were validated in follow-up meetings as well as in the combined member checking meeting, where all service providers, disabled youth and their families came together for member checking of findings. as a tool to trigger information-gathering in the focus groups and in the individual in depth interviews, the wheel of opportunities for participation (woop) incorporated the elements of the livelihood component from the cbr guidelines, namely, skills development, self-employment, wage employment, financial services and social protection (who 2010). in the interviews, the data gathered related to the service providers’ skills, knowledge, attitudes and approaches for facilitating the participation of disabled youth in economic opportunities linked to the five elements of the livelihood component. the interviews began with an open-ended question, and the participant’s response guided the researcher to further questions. in the focus groups, the data gathered related to the disabled youth’s participation in the opportunities (from the perspectives of the disabled youth and their families) and outlining the barriers and facilitators in relation to the services provided. they also reflected on the support they required from the service providers and their awareness of the current services (see figure 1). figure 1: wheel of opportunities for participation. all participants were asked to plot on the woop their perceived level of participation of the disabled youth for each element. they then gave reasons for plotting whether the participation was high, low or average and identified strategies for improving the low participation to high. all the participants gave permission for the interviews to be digitally recorded. the interviews were conducted in english for the service providers and isixhosa for the disabled youth and their families. all focus groups and interviews were 1.5 hours long, including rest breaks. a reflective journal was kept after each meeting with all the participants to record any critical incidences, as well as the lead author’s thoughts, experiences and learnings throughout the research process, especially the methodological aspects of the research. this tool was a useful reference point during the data analysis as it contributed to the interpretation of data and development of an argument. data analysis the analysis explored the understanding of the service providers, disabled youth and their families regarding disability and economic opportunities. it identified their visions and strategies, as well as challenges they experienced in developing disability-inclusive economic opportunities for disabled youth. these elements are more subtle and less easily quantifiable concepts, which are first and foremost critical when looking at organisational capacity (kaplan 1999). the perceptions of the service providers were explored alongside the perceptions of the disabled youth and families, which contributed significantly to comparing their perceptions on the skills and abilities of the public sector to support disabled youth, as well as what was happening at ground level. all isixhosa interviews were translated and transcribed simultaneously and verbatim. they employed thematic coding: firstly, the primary researcher familiarised herself with the data, to understand the overall meaning of the information (babbie & mouton 2001). then a preliminary analysis of each transcript was done, to identify codes that emerged from the raw data, which were grouped together to form categories. these categories were grouped, in turn, to form themes. a second level of analysis was done inductively across the different data sources, to verify categories and themes, until data saturation was reached. to ensure rigour and trustworthiness of the data analysis and interpretation processes, we followed up with the participants of both groups (service providers, disabled youth and their families) together for member checking of themes and categories (creswell 1994). ethical approval for this study was obtained from the faculty of health sciences human ethics research committee at the university of cape town. in the next section, pseudonyms are used to protect the anonymity and confidentiality of the participants. results two themes emerged related to the service providers’ capacity within the public sector to facilitate inclusive economic opportunities, namely 1) generating an understanding of disability, and 2) the competing visions and strategies. the views of the service providers are compared with those of the disabled youth and their families. generating an understanding of disability different understandings of disability by service providers revealed an impairment focus, which was multifaceted, coupled with a continuum of attitudes. the capability to participate was based on the type of impairment, with significantly more awareness of physical impairments and less of sensory or intellectual impairments. there was minimal recognition of the role of attitudinal, personal and environmental factors in the insufficient engagement and inclusion of disabled people. different views were shared by the services providers: ‘to be disabled does not mean that you cannot do ‘abc’ … if you just remove those barriers to show what these people are capable.’ (bonang, local municipality) ‘a person who has been injured, and [it has] affected a specific limb … some of them have the ability – like the paraplegics, because they can use their hands – but the quads cannot be employed.’ (beauty, health) ‘there are certain things they are not able to do because they struggle a lot … not to say he or she cannot do anything for herself or himself … our programmes include people who are basically coping, and you find out that they’re very good with handwork or hard labour; but you cannot put them in charge as part of the executive, as sometimes they lose it … i think even, not ‘physical’ per se, i think even mental; what i can say is that mostly we see physically disabled people, because we can relate.’ (cebo, social development) the disabled youth and their families felt that, in their context, they came across as people who were unable to do things and become productive and contributing members of the community. some disabled youth stated: ‘as people who are disabled, we are looked down upon, and only used for purposes of getting votes when it is voting time.’ (buhle, disabled youth) ‘i think that we come across as people who are unable to work productively, and we end up believing that. for instance, i once lost a job and i was just told that i will be phoned, but till today, that was a lie. it was because of my disability.’ (onke, disabled youth) the parents of disabled youth experienced discrimination and the negative attitudes of service providers as limitations of their capacity to support disabled youth from accessing skills development opportunities essential for work: ‘they are able to do handwork, but these skills need to be enhanced through further education and training, which is what we do not have here. they are discriminated against in schools and excluded from available opportunities.’ (nosiphiwo, mother) the attitudes of the service providers revealed that they recognised ability and productivity amongst disabled youth, but they also held stereotypes of disabled youth’s dependency on grants. these perceptions influenced how the service providers facilitated inclusion. they fluctuated between different views of perceiving disabled youth as being very positive and believing in their potential to doubting and blaming them for their exclusion. table 1 reflects the continuum of both disabling and enabling attitudes quoted from the service providers. table 1: continuum of attitudes. competing visions and strategies the service providers identified various visions and certain strategies for facilitating economic inclusion for the disabled youth. these ideas are reported in relation to those of the disabled youth and their families as well as their challenges. the categories being able and fighting poverty were the identified vision. being able to gain confidence, self-reliance, resilience, skills, as well as fighting poverty, were identified as contributing factors in promoting inclusion: ‘we are not just going to people and assisting them; there should be something that they are already doing. then they can come and apply for funding… [we] would like to see them believing in themselves, and being able to do things to gain that self-reliance and resilience; because you will find out that mostly, disabled people, they do not believe in themselves… the main objective of social development is to fight poverty, more especially in a sustainable project. we only fund projects that will assist communities – for instance, farming.’ (cebo, social development) ‘here at social development, we fund youth and women. we cover that they create their own businesses, which is self-employment. jobs are created in that they are given the money to work for themselves, so initiating the project and running it is a job, and they get money from the project, which is the earnings.’ (cebo, social development) ‘in siyazondla [‘we are nourishing’] they have gardens in their households – this is only to provide for themselves at home. siyakhula [‘we are developing’] is like an expansion of that, to producing more to sell.’ (akhona, agriculture) ‘as a municipality we have as a starting point selected one person per ward to build ramps in their households to those people who are wheelchair bound. to educate people, that after building your rondavel or a flat, do not just build the steps. there must be ramps even for people with disabilities, because we are not living alone, amongst family members or neighbours; we have got people who are wheelchair-bound.’ (bonang, municipality) the categories it is for youth in general, active in decision making and we move together were identified as the strategies of the service providers to achieve their vision for disabled youth: ‘we just provide service to everyone; there is nothing specific to disabled youth. and also, part of what we do, [it] does not emphasise involving disabled people to ensure that they participate.’ (cebo, social development) ‘there is no special treatment here which is specially designated for … although we need to absorb many people with disabilities; we have to be very careful to not discriminate. so i think some do require some degrees or diploma and some particular certificate.’ (bonang, municipality) ‘the type of approach we are using is to collect information from the people in terms of what they exactly want; and as the government of the people, we do exactly what the people really want.’ (bonang, municipality) in comparing these views, disabled youth and their families felt that they wanted to strive for themselves and be able to achieve ordinary aspirations but also recognised that service providers could be more supportive, advising and guiding them in this process: ‘they need to be motivated to strive for themselves…’ (nosakhile, mother) ‘there is no one to even advise us on how to start those initiatives; there is no one to advise us and enable us to succeed. there is a project here, but we do not know who is helping them, we just saw a project going on. we need people to advise and train us and that is what we need to empower ourselves as the families of disabled children. we need to be assisted.’ (bobisa, father) they also wanted to be economically self-empowered: ‘it is mainly the grant that is available here in cofimvaba, which is what helps people live.’ (ayanda, disabled youth) ‘we usually borrow money from other community members and return it on pay day … maybe if i had some capital, i could only take some money from the grants and then start a business … my wish is for them [disabled daughter and son] to be assisted by government to get bursaries for schooling.’ (nosakhile, mother) ‘i do not know where and how to get further assistance towards capital … we do not know about any other places that help financially for us to start businesses; no one has ever told us about that, which is why we do not know. we have not seen such places … we have not received any help or advice from there apart from the grant [clinics and hospitals].’ (nosakhile, mother) family members and disabled youth further shared some strategies for service providers to enable disabled youth to become economically self-empowered: ‘…find help and look for opportunities, and even open opportunities for themselves so that they can stay in their communities and develop.’ (nosakhile, mother) ‘there need to be people who specifically come to help and train youth on how to manage and start specific initiatives, so that the youth can carry on without outside help to develop them.’ (nosakhile, mother) ‘they must come to us and discuss with us, so that they can understand us better and our needs; in this way we can learn how to work together and empower each other.’ (onke, disabled youth) discussion it is evident from our findings that the understanding of disability still remains predominantly impairment-focused; often the functional capabilities and limitations of disabled youth are perceived to be a result of (and dependent on) the different types of impairment, rather than attitudinal and environmental factors. duncan et al.’s (2011) instrumental case study on service providers from the departments of health, education and social development in the eastern cape’s alfred nzo district found similar results. kaplan’s (1999) framework states that for an organisation to have capacity, it needs to have an understanding of its world and its role in it. within the context of the current study, this would ensure a common understanding of inclusive development as well as inform roles and strategies in meeting the development needs of disabled youth in this community. the findings highlight that although the represented departments aim at facilitating inclusive development of all people, they remain vague in their strategies to make this inclusive development a reality. this finding links to organisational intent; all participants showed awareness of having to include disabled youth, yet were not very knowledgeable about disability inclusion and the related policies, as well as aligning these processes with their work. there is a need for service providers to take a holistic approach, taking into account all aspects of a person’s lived experiences and their context, such as the individual needs related to their impairment, personal and environmental factors, as well as activity and participation restrictions that may impinge on their rights as active citizens. being inclusive then refers to ensuring that the voice of each person is part of the process of change. this study revealed that there is a difference between what service providers say they do and what they actually do related to the economic and social inclusion of disabled youth. this difference shows a clear disjuncture between the policy aspirations and the reality of minimal implementation. dube (2006) identified various reasons for poor implementation of disability-related policy at different levels of government, namely, limited conceptual understanding, poor championship, inadequate arrangements and general lack of capacity. it seems that programme managers do not have the capacity (conceptual understanding, which informs the attitudes and strategies) to mobilise disabled youth to participate in new or existing programmes nor a comprehensive understanding of how to monitor their economic and social inclusion, despite their understanding policy aspirations. the latter speaks to organisational attitude, which is an intangible element of capacity. our study further reveals that intellectually disabled youth were viewed as the most productive, particularly in handwork, but not in executive or managerial work. physically disabled youth were perceived as unemployable, particularly those who were quadriplegic. kumurenzi (2011) recorded similar findings in the western cape, where many disability and rehabilitation services seem to operate using an individual, impairment approach. some service providers in this study perceived disabled youth as not wanting to engage in community projects. the perception reinforces the individual model of disability, which states that disabled people are weak, helpless and dependent on charity or professionals, needing care all the time (terzi 2004). any restriction of activity or social disadvantage that the individual confronts is deemed to be the inevitable consequence of the impairment (thomas 2002, cited in hammell 2006). this perception was often the reason service providers did not mobilise disabled youth, thereby limiting participation in gaining skills. the impact of attitudinal barriers was also observed in a study on people with mental illness who experienced employment discrimination (stuart 2006). stuart argued that attitudinal barriers impact significantly on the participation of disabled people in the open labour market. similarly, johannsmeier (2007), lorenzo et al. (2013) and cramm et al. (2012) found that negative attitudes of teachers or parents may prevent a child from attending school, and the resulting lack of education will in turn affect employment prospects. this finding confirms the argument of eide et al. (2014) that a key to knowledge production necessary for disability-inclusive developments is a critical view of the dominant understandings of disability and development. it was shown that disabled youth and their families perceived disability as inability. this may be because the prevailing discriminatory attitudes, marginalisation and experiences of despair had led to occupational disengagement – the absence of engagement in occupations due to a loss of the meaning derived from previously enjoyed occupations (krupa et al. 2009). drawing from occupational science, occupations refers to the ordinary, everyday things that people do to meet their various needs, interests and aspirations (watson & fourie 2004). exclusion on the basis of disability has had a profound effect on the self-esteem and confidence of disabled youth and their families, making them think they are incapable and incompetent. disabled youth and their families have positive perceptions of disability grants; they view grants as positive enablers for entrepreneurship opportunities, as they provide seed funding for starting small businesses. similar findings were identified in studies conducted in informal settlements in cape town that revealed links between the disability grant and level of participation (lorenzo et al. 2007; van niekerk, lorenzo & mdlokolo 2006). service providers need to understand disabled youth’s choices and that decisions are shaped by the many factors that influence their lives. it is essential that service providers link their strategies for economic inclusion to what is perceived as important and needed by disabled youth and their families. this linkage can be achieved through providing support for and establishing relationships with the people benefiting from these services. it is not a matter of the individual person changing or adapting, but rather a need to address physical inaccessibility, attitudinal and informational barriers in communities through local service provision at the municipal level (grut et al. 2012). community development workers have been identified as well positioned to facilitate these shifts (lorenzo, van pletzen & booyens 2015). this enablement approach could be a catalyst for empowerment, so that disabled youth could become agents of their own change. the extension officers, community development workers and local government structures in cofimvaba need to play this role and be equipped with skills related to mobilising, organising and supporting disabled youth and their families in the planning and implementation of self-help projects (ned-matiwane 2013). seeing disabled youth engaged in productive work has been shown to increase public awareness of youth as capable and equally contributing members of society (lorenzo et al. 2007; van pletzen, booyens & lorenzo 2014). shaw et al. (2007) asserted that a supportive social context of team effort and meaningful partnership between service providers and disabled people is important to encourage equitable participation for disabled people. ramphele (2008) suggested that all south africans need to learn to work together. a feasible attitude-changing strategy would be to engage service providers in transformative processes to help heal divisions (ramphele 2012). transformative leadership is one approach to lead a change towards teamwork and collaboration, rather than viewing each other as competitors. this approach is particularly applicable to creating leadership for public service delivery for everyone in rural areas, including disabled youth and their families. additionally, an asset-building approach could facilitate awareness of the capacities of disabled youth and thus shift negative attitudes to an enabling attitude that realises that disabled youth do have something to contribute, as they also have skills and abilities to contribute to community development (mcknight & kretzmann 1996). this approach will also lay the foundation for service providers to recognise the skills that are lying dormant at the community level. it would assist with building collaboration and partnerships for community development. conclusion the cbr guidelines (who 2010) presented at the beginning of this article provide a critical framework and strategy for the adoption of disability-inclusive rural community development by all service providers and development workers. this strategy is intended to foster the participation of disabled youth and their families; to challenge existing inequalities, group identities and differences; to raise the self-esteem of currently devalued groups; and to build the confidence to act. it is essential that the service providers and development workers link the activities of the community to priorities for disabled youth. whilst many factors contribute to the gaps in integrating disabled youth, the capacity of service providers in rural areas needs to be strengthened to significantly impact on creating real service delivery outputs, in order to realise a truly inclusive society. the following are three recommendations for shifting the thinking about disability and encouraging a two-pronged approach to the social and economic inclusion of disabled youth by service providers: dialogue must happen between service providers and disabled youth and their families to recognise people’s potential and encourage the reciprocity of ideas related to building consensus on the visions and strategies to promote the social and economic inclusion of disabled youth. further training and workshops on monitoring disability inclusion are needed to promote a broader understanding of and sensitisation to disability, as well as an understanding of mainstreaming disability. inclusion of disability issues into government strategies for education, skills development and employment should be addressed systematically. a holistic understanding of the human rights needs of disabled people is necessary to assist service providers in recognising impairment and functional needs, whilst also being aware of the personal and environmental factors that could be both barriers and facilitators to meeting these needs. this focus will reconceptualise disability within an expansive framework, instead of the narrow views evident in this study, and may contribute to reducing injustices and exclusion based on disability discrimination. acknowledgements we thank all participants in the study and the chief of cofimvaba. we acknowledge the national research foundation (nrf) community engagement strategy for funding the study on dyra and thank dr khaya tshabalala for coordinating the study site and providing emotional and intellectual support throughout the study. we thank professor roy mcconkey and dr. gubela mji for insightful comments that helped sharpen our thinking throughout the project, as well as whilst writing the article. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.n. was the postgraduate student and conducted this research at the cofimvaba study site as part of an mphil in disability studies, university of cape town. t.l. was the principal investigator of a larger study on dyra and the supervisor of the postgraduate student. l.n. conceptualised, wrote and prepared all drafts of the manuscript for publication; 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accepted: 31 aug. 2022; published: 15 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction the coronavirus disease 2019 (covid-19) was declared as a global pandemic by the world health organization (who) in march 2020. to curtail the spread of the virus, governments implemented national lockdowns, restricting the movement of individuals. as the pandemic evolved and vaccine roll-out was implemented the lockdown measures were eased. however, even with the lowering of lockdown measures in south africa, access to public places was limited: beaches, gyms and recreational facilities were inaccessible to the public. this resulted in an immediate and general reduction in physical activity and participation in sport, both social and competitive, and a subsequent increase in anxiety and depression (taquet, holmes & harrison 2021). yet again, children and adolescents with disabilities were particularly vulnerable, as the already limited spaces where they had participated in physical activity were often not universally accessible. the benefits of physical activity for these young people are well known, and include an improvement in cardiovascular fitness, psychosocial and physical functioning and rehabilitation outcomes (kim et al. 2016). therefore, as part of a series of policy briefs to promote physical activity for health, during covid-19 and beyond, a specific brief was co-developed for this vulnerable population in december 2020. working in conjunction with disability advocates, along with academics and practitioners, this policy brief served to provide recommendations for physical activity and health in african children and adolescents with disabilities, with special reference to the covid-19 pandemic (naidoo et al. 2020). daily physical activity, mostly in the form of active play, is recommended for children and adolescents. the who recommends participation in moderate-to-vigorous physical activity for an average of 60 min per day. this should be composed predominantly of aerobic-type activities, integrated with some vigorous-intensity aerobic and strength activities, 3 days a week. the united kingdom’s physical activity recommendations highlight that even 20 min per day offers health benefits, especially for children and adolescents with disabilities (smith et al. 2022). given the growing recognition of the importance of reducing sedentary behaviour, it has also been recommended that recreational screen time be restricted to not more than 120 min each day. depending on the functional capabilities of children and adolescents with disabilities, supervision from a health professional may be required for the completion of certain regimens. physical activity policy briefs are not uncommon. however, as a direct result of the covid-19 pandemic, a gap exists on policy guiding physical activity participation and recommendations during covid-19, country-, culturallyand context-specific. the policy brief was to be used as a tool to present research and recommendations to non-specialised audiences. policy brief development a policy brief is a stand-alone, practical document focussing on a single topic, using an active voice, presented in clear and simple language, and providing little or no room for misinterpretation, as the target audience may not be familiar with the subject under discussion (lund 2010; mcivor 2018). the recommendations formed for a policy brief are based on research and evaluation relevant to the setting and context to which they are to be applied (bull et al. 2020). the most effective policy brief will present a clearly defined problem, backed up by clear evidence, and will offer realistic and cost-effective strategies to address the problem (lund 2010). perhaps the most important step in this process is the dissemination of the policy brief to its intended audience, through various social media platforms, the internet and/or conferences and workshops (jones & walsh 2008). a policy brief is equally important to both policymakers and the target audience. it encourages conceptual use of research to influence policies by redirecting discussions to important issues concerning the public, often raising an overlooked issue for policy consideration (mcivor 2018). policy briefs have the potential to change attitudes, social norms and behaviours, influencing both the public and government officials (jones & walsh 2008). policymakers are provided with information about the problem to help them make informed decisions, to develop policies that reflect the needs of the people and to ensure service delivery. similarly, through this process, the target audience is well informed (sajedinejad et al. 2021). it ensures that social movements are supported and that the target audiences’ voices are heard, as they participate in decision making and exercise their rights (mcivor 2018). this policy brief primarily focused on guiding decision makers at provincial or state, district and local levels in the development and subsequent implementation of policies and practices that promote physical activity for children and adolescents with disabilities, by creating an equitable, healthy and safe, home, school and community environment. the development process the present policy brief is the third in a series of four: (1) african physical activity network (afpan) and academic consortium, policy brief: physical activity for health in africa: guidance for during and beyond the covid-19 pandemic for the general public, september 2020; (2) naidoo r, chetty v, draper c, et al. policy brief: physical activity for health in children and adolescents in africa: covid and beyond-home, school and communities, 16 september 2020; (3) naidoo r, chetty v, smith b, et al. policy brief: physical activity and health in africa for children and adolescents with disabilities: covid-19 and beyond-home, school and communities, december 2020) and (4) christie cj, naidoo r, shung-king m, van gent m. et al. policy brief: organised school sport in south africa for children and adolescents: covid-19 and beyond, march 2021, which were developed by physical activity experts across the african continent. the briefs aimed to serve as a guide to decision makers, planners and programme leaders, both during the covid-19 pandemic and beyond. more than ever, the covid-19 pandemic has highlighted the need to prioritise physical activity as an imperative for public health awareness in africa, and in other lowerand middle-income countries. hence the need for the brief was established by a group of co-leaders in the field, including researchers, healthcare experts and disability advocates across africa, as well as partners from abroad (the united kingdom). a seven-step process was developed by the authors based on their previous experience when developing policy briefs one and two. step 1 the academic team was formed by the co-leaders (r.n., v.c., b.s. and e.l.) of this project. experts in this focused area were then invited to form the core writing group. an advisory group was also formed, comprising academics, researchers and stakeholders (some from the previous policy brief cohorts). step 2 the core writing group (the authors) then developed a draft version of the brief, based loosely on the international development research centre (idrc) policy brief toolkit (mcivor 2018). this was over a 4-week period. step 3 to gain further insights into content development, co-creators, including people with disabilities; non-governmental organisations (ngos); non-profit organisations (npos); athletes with disabilities; special needs teachers and parents and healthcare therapists working with children with disabilities, were involved in the co-creation of the document. this process was conducted over a 4-week period. step 4 the second draft was developed and then sent to the advisory group for feedback. the advisory group was given 2-weeks to provide feedback. step 5 the core writing group then developed the third draft of the brief over a 1-week period. this draft was then sent to a graphics company for formatting. this was completed within a week. step 6 the third draft was circulated to the co-creators and the advisory group for final comment. comments on the design; layout; visual appeal; understandability and importance were also requested. this was completed over a 2-week period. step 7 the final version was approved by co-leaders taking into consideration the final comments. this, together with working with the graphics company was completed over a 1-week period. the entire development process to complete the policy brief took approximately 15–16 weeks taking consideration the conceptualisation and planning times for the project. policy brief summary this policy brief can be seen in naidoo et al. (2020) and begins with information on the benefits of physical activity for the health of children and adolescents with a disability. general guidelines on the recommended amount of physical activity are briefly presented, with the primary focus on physical activity recommendations for children and adolescents with disabilities during covid-19, focusing on structured and unstructured lessons and play time. an infographic was developed, illustrating these recommendations, for wider dissemination. furthermore, we focused on the four-pillar approach: (1) protection and safety measures; (2) physical environment design; (3) physical activity and physical literacy practices and (4) physical activity sustainability, to promote healthy physical activity within healthy and safe home, school and community environments for children and adolescents with disabilities. additional information on how to minimise the risk of injury while participating in physical activity, incorporating the use of adapted apparatus and equipment is also presented in the policy brief. lastly, the document concludes with recommended actionable items to increase participation in safe and enjoyable physical activity, for children and adolescents with a disability. challenges during the policy development process the development of the brief was challenging during the covid-19 lockdown. the ideal scenario would have been to meet in person. however, due to restrictions on movement and social interaction, the information was compiled through remote collaboration due to the urgency of the document. the challenge was the turnaround time to respond and solicit feedback from collaborators. the co-leaders had the task of then considering all the comments and drafting a paper that was circulated a few times for approval. it should be noted that the collaborators were challenged by the changing work environment of higher education institutions, as well as personal matters such as dealing with the pandemic themselves. conclusion the ‘policy brief: physical activity and health in africa for children and adolescents with disabilities: covid-19 and beyond’ offers policymakers a sound roadmap on how to address inactivity during the present pandemic. although the brief has been distributed to both the public and private sectors, the ministries of sport and recreation, education and health now need to use it in the development of their policies. this policy brief must also be distributed to universities training students who will work with children with special needs and disabilities, so that this can be incorporated into their programme development. further dissemination of the policy brief is necessary, and public forum opportunities and conferences should be used as platforms in order to present the brief. given that the who’s stance stresses the prevention of disease through behaviour modification, future collaborative studies between african universities should explore ways to track and enhance physical activity, particularly among marginalised populations with disabilities. acknowledgements the authors would like to thank the academic consortium who contributed to the development of the policy brief. refer to naidoo et al. (2020) for detail of activities where these were reported. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions r.n. conceptualised and drafted the initial manuscript. r.n., v.c., p.j.g., s.m., m.e.m.y., p.e.m. and d.c. contributed the the writing of this manuscript. b.s. and e.l. critically reviewed the manuscript. ethical considerations this article does not contain any studies involving human participants performed by any of the authors. funding information this document was supported by the fogarty international centre (fic), national institutes of health (nih) common fund, office of strategic coordination, office of the director (cf/osc/od/nih), office of aids research, office of the director (oar/od/nih), national institute of mental health (nimh/nih), award number d43tw010131. the author is solely responsible of the content and does not necessarily represent the official views of the nih. data availability the policy brief that support the findings of this study are openly available in naidoo et al. (2020) and the corresponding author, r.n. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references bull, f.c., al-ansari, s.s., biddle, s., borodulin, k., buman, m.p., cardon, g. et al., 2020, ‘world health organisation 2020 guidelines on physical activity and sedentary behaviour’, british journal of sports medicine 54(24), 1451–1462. https://doi.org/10.1136/bjsports-2020-102955 jones, n. & walsh, c., 2008, policy briefs as a communication tool for development research, overseas development institute, london. kim, j., kim, m., malonebeach, e. & han, a., 2016, ‘a study of health perception, disability acceptance, and life satisfaction based on types of leisure activity among koreans with physical disability’, applied research quality of life 11(3), 791–804. https://doi.org/10.1007/s11482-015-9397-8 lund, j.f., 2010, a brief on policy briefs: forest & landscape, university of nairobi, nairobi. mcivor, m., 2018, how to write a policy brief, international development research center, viewed 08 february 2022, from https://www.idrc.ca/sites/default/files/idrcpolicybrieftoolkit.pdf. naidoo, r., chetty, v., smith, b., hanass-hancock, j., coetzee, d., young, m. et al., 2020, policy brief: physical activity and health in africa for children and adolescents with disabilities: covid-19 and beyond-home, school and communities, kwazulu-natal sports and recreation, kwazulu-natal, viewed n.d., from https://kinderkinetics.co.za/wp-content/uploads/2021/07/2020-physical-activity-and-health-in-africa-for-children-and-adolescents-with-disabilities-covid-19-and-beyond.pdf. sajedinejad, s., sansone, g., fallon, b., miller, s.p., gitterman, a., cohen, e. et al., 2021, from research to impact: a toolkit for developing effective policy briefs, cpolicy bench, fraser mustard institute of human development, university of toronto, toronto. smith, b., rigby, b., netherway, j., wang, w., dodd-reynolds, c., oliver, e. et al., 2022, physical activity for general health in disabled children and disabled young people: summary of a rapid evidence review for the uk chief medical officers’ update of the physical activity guidelines, department of health and social care, london. taquet, m., holmes, e.a. & harrison, p.j., 2021, ‘depression and anxiety disorders during the covid-19 pandemic: knowns and unknowns’, the lancet 398(10312), 1665–1666. https://doi.org/10.1016/s0140-6736(21)02221-2 abstract introduction method results discussion conclusion acknowledgements references about the author(s) getachew k. basha school of health science, university of kwazulu-natal, durban, south africa college of natural and computational science, university of wollega, nekemte, ethiopia hendrik j. van heerden school of health science, university of kwazulu-natal, durban, south africa citation basha, g.k. & van heerden, h.j., 2020, ‘profile and opinion of people with disability with respect to adapted physical activity participation in ethiopia’, african journal of disability 9(0), a657. https://doi.org/10.4102/ajod.v9i0.657 original research profile and opinion of people with disability with respect to adapted physical activity participation in ethiopia getachew k. basha, hendrik j. van heerden received: 06 june 2019; accepted: 18 may 2020; published: 16 sept. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: physical activity provides long-term health benefits for everyone and it is considered to play an important role in the deterioration of health predictors, such as overweight and the associated increase in cardiovascular and all-cause mortality. objective: to explore the profile and opinion of people with disability in ethiopia, with respect to physical activity participation. method: the study comprised a questionnaire survey among male and female participants (n = 334) with visual and limb impairment, aged 15–50 years, living in urban and sub-urban areas of ethiopia. the analyses entailed descriptive frequencies and percentages, with the chi-square statistic to test for significance between subsets of data at p ≤ 0.05. results: the profile showed participants were mostly male (n = 221, 66.2%; p ≤ 0.05), had completed secondary school (n = 204, 61.1%; p ≤ 0.05), were not formally employed with some being day-labourers (n = 92, 27.5%) and petty traders (n = 71, 21.3%). the majority (p ≤ 0.05) had limb disabilities (n = 190, 57%) as opposed to vision impairment. only 10% (n = 34; p ≤ 0.0001) confirmed participation in physical activity. more than half (n = 175, 52.7%; p ≤ 0.0001) were unsure whether exercise improves health but the majority (n = 175, 52.4%; p ≤ 0.0001) did agree that participation in adapted physical activity requires better facilities. conclusion: ethiopian persons with disabilities are physically inactive. there is need to raise awareness on the benefits of physical activity amongst people with disabilities and for disability friendly facilities to encourage physical activity. keywords: disability; adapted physical activity; opinion; participation; ethiopia. introduction physical activity had a vital role in the lives of ancient cultures of the greeks, romans and jewish people. the roman physician galen (129–210 ad) is credited as being the earliest source for describing benefits of exercise by condition and intervention details in his famous work de sanitate tuenda (translated by green 1951). in the middle ages, moses maimonides (rambam), the spanish physician, theologian and philosopher of the 12th century, who had a major impact on the jewish and arabic world at that time, praised exercise as a protective factor confronting illness (rosner 2002). the world health organisation (who 2018) defines physical activity as any bodily movement produced by skeletal muscles that requires energy expenditure – including activities undertaken whilst working, playing, carrying out household chores, travelling and engaging in recreational pursuits. given its various advantages, physical activity is now accepted universally as a human right adopted by the (united nations educational, scientific and cultural organization [unesco] 1978), through their international charter of physical education and sport (unesco 2018). so too, the united nations organization (uno) has established the (united nations office on sport for development and peace [unosdp] 2011), accountable for endorsing sport as a vehicle for attaining peace and development [united nations office on sport for development and peace (unosdp) 2016]. global initiatives, such as the world health organization’s health and development through physical activity and sport (who 2003), the international olympic committee adoption of the olympic charter on 07 july 2007 and the united nations organization’s 2009 convention on the rights of persons with disabilities (article 30.5), focus on enabling persons with disabilities to participate on an equal basis with others in recreational, leisure and sporting activities (uno 2018), and have all emphasised engaging in physical activity as a community-based rehabilitation method to maintain good health. individuals with disabilities who participate in sports have higher self-esteem, better body image and higher rates of academic success, and are more confident and more likely to graduate from high school and matriculate in college (lakowski & long 2011). physical activity and sports participation for individuals with disabilities prevent health problems by reducing the risk of developing heart disease, controlling weight, building lean muscle and reducing fat (manley 1996). it reduces the risk of developing secondary conditions that are related to a primary disability, such as fatigue, obesity, social isolation and deconditioning (lakowski & long 2011). in addition to the prevention of secondary conditions and the promotion of overall health and well-being, physical activity can be important in the day-to-day life of people with disabilities. the strength and stamina that is developed by participating in physical activity can help maintain a higher level of independence. moreover, just like able-bodied individuals, persons with disabilities have the potential to improve their physical abilities (peynot, chantereault & bouizid 2011). participation in physical activity is related to the relative importance attached to exercise and this is influenced strongly by the, often-negative, views regarding the capabilities of persons with disabilities. medical contra-indications to physical exercises for persons with disabilities are far less common than one might visualise. yet, despite the many known benefits of physical exercise, several people with disability are not involved in physical activity or disability sport. novak (2017) makes reference to ‘disability divide’ in international sport, where the increasing access to technology and sport assistance in the global north largely benefits privileged elite disability athletes, whereas resource-constrained societies with significant economic and cultural barriers in africa face major challenges in this respect. ethiopia was the first truly african sub-saharan country to participate at the 1968 paralympics, when it sent two male athletes to tel aviv to compete in table tennis and track and field (paralympic.org); however, in the period that followed african representation at the paralympics did not increase notably. in that respect, the ethiopian paralympic federation (2017) maintains that physical activity participation by most ethiopian people with disability is rare and remains constrained by barriers. there is a paucity of published information in this context. as such kentiba and asgedom (2017) considered elements contributing to limited participation of disabled ethiopian children (n = 12) in school-based extracurricular sport activities and mojtahedi and katsui (2018) looked at wheelchair basketball players (n = 31) as a case study in advocating the implementation of the ‘right to sport’ for persons with disabilities in ethiopia. however, that work is limited in inference, scope and in terms of sample populations; thus, the need for research on a broader scale in the ethiopian context has been evident. aim in cognisance of the above, this article reports on the profile and opinion of people with disability in ethiopia, with respect to adapted physical activity participation. method study design setting the study entailed a descriptive survey and was conducted in the regions of oromia & the southern nation and nationality people (snnp) ethiopia. these areas were purposively sampled from nine regions and two city administrations in the country due them reflecting the highest prevalence rates of people with disability, in comparison with the others part of the country. according to the federal democratic republic of ethiopia (fdre 2002) country profile on disability, the prevalence rate of people with disability in the regional states of ethiopia was as follows: oromia (n = 333 653), amhara (n = 281 291), snnp (n = 174 941), tigirayi (n = 90 742), addis ababa city administration (n = 45 936), somalia (n = 31 686), afar (n = 13 546), benishangul (n = 7341), dire dawa city administration (n = 4226), harari (n = 2909) and gambela (n = 2581). participants and sampling the participants of the study were people with a disability in ethiopia. the inclusion criteria were those with limb and vision impairment, aged between 15 and 50 years of age, of both genders living in urban and suburban areas, and not hospitalised. the purposive sample size was calculated by ‘raosoft’ software using single population proportion formula of using 95% confidence level, 0.5% degree of precision and 50% proportion of disability prevalence. the sample size was 384 which after adding 15–20 for non-response gave an overall sample size of 400 people with disability with additional inclusive and exclusive criteria from two regions (oromia & snnp). the report on the implementation of the convention on the right of persons with disabilities in ethiopia conducted by the fdre (2012), as referred to in the 3rd housing and population census (central statistical agency [csa] 2007), indicates that vision and limb impairment have the highest disability prevalence rate (approximately n = 225 816; 60%) compared with all types of disability in ethiopia within the specific age range of 15–50 years (n = 371 625). accordingly, the study focused on respondents (n = 334) with impairment of the lower and upper limbs (n = 190) and visual impairment (n = 144). ethical consideration ethics committee approval was sought from and granted by the humanities and social sciences ethics committee, university of kwazulu-natal (hss/0768/015d) as well as caregiver approval for participants below the age of 18 years, in addition to gatekeeper permission from the ethiopian paralympic federation. the study was conducted on the basis of ensuring the principles of privacy, confidentially, anonymity, informed consent, voluntary participation and the right to withdraw from the study. data collection tools the researcher utilised a questionnaire survey with two sections. the first section comprised a self-constructed demographic section. the second section of the questionnaire explored the opinion of participants, about adapted physical activity, using a 5-point likert scale with items drawn from the literature reviewed in general, and in particular, adapted from jackson (2004) and sharkey and gaskill (2007). the questionnaire was piloted with participants (n = 40) (people with disability) from one district, not included in the sampling process, with the support of one of the local sports officers. the pilot study served to determine the reliability and validity of the questionnaire. subsequently, the questionnaire was amended by eliminating ambiguities, unnecessarily repeated questions and by ensuring that the allotted time taken to complete the questionnaire (30 min) was sufficient, in particular, to accommodate responses from visually impaired participants using enumerators to complete the questionnaire on their behalf. data analysis after the data were collected, the researcher coded raw data for subsequent analysis using statistical packages for social science (version 25). for the purpose of analysis, the 5-point likert scale question responses were merged into three categories, namely, strongly disagree, undecided and strongly agree. frequency count and relative frequency percentage were used as a descriptive statistic and the chi-square statistic was used in the inferential analysis for sub-sets of categorical data, with p ≤ 0.05 to show significant differences between data sets. results to recap, this study sought to present the profile and opinion of people with disability with respect to adapted physical activity participation in ethiopia. the results are presented accordingly, in tabular form. profile of the respondents table 1 reflects the demographic profile of participants. table 1: demographic characteristics of participants (n = 334). of the total sample population, the significant (p ≤ 0.05) majority presented in the 15–25 years age category (n = 201, 60.2%), followed by 26–30 years (n = 103, 30.8%), with fewer in the 31–40 years (n = 19, 5.7%), 41–50 years age categories (n = 11, 3.3%). as indicated, the sample group consisted of both female (n = 113, 33.8%) and male (n = 221, 66.2%) participants. the marital status of the respondents indicated the majority were single (unmarried) (n = 246, 73.6%), some married (n = 79, 23.7%) and the minority divorced (n = 9, 2.7%), respectively. a small proportion of participants (n = 62, 18.5%) left school after primary education (age of 12 years), but the significant majority (n = 204, 61.1%; p ≤ 0.05) of participants concluded their education after secondary school level (age of 18 years). some participants had completed a diploma (n = 43, 12.9%), and a small proportion had attained a degree (n = 25, 7.5%). most participants were either day labourers (unemployed pieceworkers) (n = 92, 27.5%), followed by students (n = 87, 26%) and petty (informal) traders (n = 71, 21.3%). the minority were on early pension having been medically boarded (n = 42, 12.6%) and civil servants (n = 42, 12.6%), respectively, with none being employed in the private sector. disability types and causes amongst respondents table 2 reflects the disability type of the respondents and the causes. table 2: type and causes of disability (n = 334). from the total number of participants, significantly more (p ≤ 0.05) had limb disabilities (n = 190, 57%); comprising impairments of the lower limbs (n = 61, 32.1%) and upper limbs (n = 129, 67.9%), with fewer having vision impairment (n = 144, 43%); comprising blindness and low-vision. as for the causality of disability, the significant majority (p ≤ 0.05) was because of an accident (n = 154, 46.1%), followed by birth (before or during) (n = 81, 24.4%), disease (n = 71, 21.2%) and violence (n = 28, 8.3%) sequentially. practices and opinions towards physical activity participation table 3 indicates the responses of participants regarding physical activity participation, with the 5-point likert scale question responses merged into three categories, namely, strongly disagree – likert scale 1 and 2; unsure – midpoint likert scale 3; and agree – likert scale 4 and 5. table 3: physical activity participation practices (n = 334). in response to their practices in physical activity participation, the significant minority (10.0%; p ≤ 0.0001) of participants, irrespective of impairment, responded positively in terms of frequent participation in physical activity. similarly, the significant minority (p ≤ 0.0001) of participants confirmed doing exercise of a moderate frequency accumulating to 2–3 h per week. table 4 indicates the responses of participants regarding opinions and perceptions of physical activity participation, with the 5-point likert scale question responses merged into three categories, namely, strongly disagree – likert scale 1 and 2; unsure – midpoint likert scale 3; and agree – likert scale 4 and 5. table 4: opinions and perceptions of physical activity participation (n = 334). based on their limited experience in participating in physical activity (table 3), the significant majority (p ≤ 0.0001) of respondents were unsure whether they like doing physical activity and were not aware whether exercise improves health. the significant majority (p ≤ 0.0001) were, however, of the opinion that participation in physical activity required better facilities (table 4). discussion demographic profile the purpose of this study was to characterise ethiopian people with limb and vision disability in terms of their profile and opinion regarding physical activity participation. their demographic profile (table 1) showed a dominance of males and the majority fell into the relatively young 15–25 years age category. the gender and age profile reflects the good representivity of the sample, matching the national gender-specific disability demographic, which has a larger male proportional representation amongst ethiopians between the age of 15 and 50 years with limb and vision disabilities specifically (males: n = 123 333, 54.6%) and disabilities overall (males: n = 200 802, 54%) as documented by the unesco (2018). similarly, the participants matched the national age-specific disability demographic with the highest number of people in ethiopia, with limb and vision disabilities specifically (78 261) and disabilities overall (138 618), also falling into the age group of 15–25 years (unesco 2018). this is in contrast to some countries in west africa, where miszkurka et al. (2012) noted that mobility disability was more frequent at an older age category (35–44 years old) and more common in women than men, with a respective prevalence of 23% and 17% in burkina faso, 23% and 12% in mali and 34% versus 22% in senegal, with women having higher odds of mobility difficulty than men at every age group in the three countries. the male dominance and age differences for disability in ethiopia may reflect a different exposure profile for east african countries, in terms of occupational risk (table 1) and road traffic accident risk (table 2) found in our study. most participants were unmarried. this contrasts with the proportional married status amongst ethiopians without disability in the age group of 15–25 years (60.8%) and for the ethiopian population in general, including those older than 50 years (52.7%) of age (csa 2007). the basis for the larger number of single (unmarried) participants in our study of ethiopians with limb and vision disability is likely to be financial challenges and discrimination. anastasiou and kauffman (2011) have indicated that, because of socially constructed misunderstandings, members of a community in developing countries have a tendency to believe that disabled people, particularly women, cannot participate in relationships and have families. tefera et al. (2017) reported similar negative communal attitudes in ethiopia towards disabled women regarding relationships. however, this demographic is universal with the majority of disabled people worldwide, particularly women, being denied the likelihood of intimacy or marriage (frohmader & ortoleva 2013). in addition, individuals with a disability are not considered to be as productive as able-bodied persons in the community. this negative perception and marginalisation of people with disability in society makes it difficult to find a spouse, as typically, men do not marry a woman with a disability (mohajan 2013). in line with the result of this study, ethiopian children with disability are often excluded from mainstream educational services and, as a result, have limited opportunity to socialise with non-disabled children in the school setting (mohajan 2013). according to lasonen, kemppainen and raheem (2005), current ethiopian policy requires that compulsory education lasts 8 years from age 7 to 14, comprising primary school (ages 7–12 years) and the first 2 years (cycle 1) of high school (ages 13 and 14 years), which enables students to identify their interests in further education. thereafter, the second cycle of secondary education (ages 15–18 years) allows students to select subjects or areas of training, which will ready them sufficiently for the work place or higher education. accordingly, lasonen et al. (2005) indicate that of the school-aged and tertiary student population, primary school (39.9%) and secondary school (37%) enrolments make up the majority. although the transition rate from primary to secondary education completion is good (91.4%), close to 40% of the ethiopian population leave school after completing the last grade of primary school (lasonen et al. 2005). in our study, almost two-thirds of the participants had completed their secondary school education as a highest qualification. however, as mirrored in the general population (lasonen et al. 2005), only a quarter of the respondents had completed a tertiary diploma (12.9%) or degree (7.5%), although in comparison with the general population, fewer of the respondents left school prematurely after primary school (20%). it should be noted, however, as mohajan (2013) found that ethiopian children with disability are often excluded from mainstream education and thus their educational demographics will differ from the general population. as such, the ethiopian national association for the blind runs special elementary schools, organises training activities and aims to assist persons with visual disability in furthering their education and integration into ethiopian society. in terms of occupational status (table 1), whilst a quarter of the participants were scholars or students, less than two-thirds were economically active, primarily as day labourers (unemployed piece-workers) or petty traders, which is less than the national demographic of more than three-quarters of the general population in the same age-band, being economically active (csa 2007; lasonen et al. 2005). this confirms the who and world bank (2011) world report on disability, work and employment that in developing countries, like ethiopia, the educational level attained and employment opportunity is not good amongst persons with disabilities and that they are more likely to be poor compared with persons without disabilities. data from who and world bank (2011) for several african countries for the years 2003–2006 show that the average respective employment rate for people with disabilities is lower versus those without disability (zambia 42.2% vs. 56.5%, south africa 12.4% vs. 41.1% and malawi 42.2% vs. 46.2%). if one considers that only 12.6% of participants in our study were formally employed in the civil service, this figure corresponds with that for the disabled in south africa (12.4%). according to the international labour organization (ilo) (2013), an investigation conducted by the world bank found that 55% of persons with disability in ethiopia, particularly in oromia region, depend on friends, family and neighbours for their living, whilst others create a meagre income through self-employment. notwithstanding the efforts of the ethiopian national association of the physical handicapped (enaph) to provide for basic education courses and vocational rehabilitation in the areas of tailoring, agriculture, leather work and carpentry (ilo 2004), amongst the participants day labourers and petty traders together (48.8%) form part of the informal labourer sector and can, in essence, be considered as unemployed. by comparison, csa (2007) figures for the general economically inactive (unemployed) population of ethiopia (ages 15–51 years) reflect as being far less (22%) than that of respondents. more recent for ethiopia (trading economics 2018) confirms the situation, showing lower unemployment figures amongst the general population, with a rate of 17.40% in 2014 and 16.80% in 2015. this problem is made worse by the absence of social grants for individuals with a disability (desta 2018). moreover, employment segregation is still widespread in private organisations across ethiopia (ethiopian centre for disability and development 2017). advocates for human rights (2016), a non-governmental organisation in special consultative status with ethiopia’s compliance with the convention on the rights of persons with disabilities (economic and social council), declares that the laws against segregation founded on disability in the service sphere are ‘limited to civil service institutions’, and are non-existent in private organisations. according to this source, the government does not ‘take any measure against private institutions’ when they exclude workers or job seekers with disabilities. according to the advocates for human rights (2016), ethiopia’s labour proclamation legislation (article 27: work and employment) does not shield ethiopian persons with disabilities. on the contrary, the regulation permits disability as grounds for job cancellation and it does not permit for an appeal against separation and withdrawal. the regulation does not compel business owners to make realistic job accommodations for workers in posts where the nature of their disability makes it difficult to perform their tasks with (advocates for human rights 2016). thus, disabled persons are not suitably absorbed into the labour-force and according to the ilo, several people with disabilities in ethiopia sadly ‘depend on family funding and begging for their livelihoods’ (advocates for human rights 2016). disability type and causation with reference to the disability type and cause (table 2), category results show that vision impairment was less common than limb disability amongst participants and this strongly matched the proportional disability for vision (86.654; 42.5%) and limbs (117.157; 57.5%) for ethiopians in the age group of 15–50 years (csa 2017) but differs slightly when considering ages above 50 years, where more vision impairment (53%) is typically found (unesco 2018). when considering the higher relative proportion of upper versus lower limb impairments, respondents differed from limb disability profile amongst ethiopians in the age group of 15–50 years (csa 2017) and beyond (unesco 2018), where lower limb disabilities are in the majority. this could possibly be ascribed to a lack of wheelchairs and the burden of heavy, less-modern, crutches making lower-limb disability cases less mobile and less likely to present themselves for the research. pertaining to causes of the disability, findings amongst participants show that the majority were afflicted during an accident, including motor vehicle collisions, followed by congenital origin. the profile of the respondents differed somewhat from the aetiology of the ethiopian disability population between the ages of 15 and 50 years for limb and vision impairment and the general disability population, where disability was more common because of disease (58%) but less incurring their disability before or at birth (10%–14%). the disability aetiology amongst participants in this study has foundation, however, from a world report on road traffic injury prevention jointly prepared by who and world bank (2004), indicating that 90% of disability-adjusted life years are lost because of crashes (peden et al. 2004). similarly, the global status report on road safety (toroyan 2009), in collaboration with who, found that over 90% of the world’s fatalities on the road occur in low-income and middle-income countries, which have only 48% of the world’s registered vehicles. this is in line with the study conducted in ethiopia by tulu, washington and king (2013), which found that ethiopians are more likely to make use of commercial vehicles (37.8%), mini-buses (34.5%) and buses (18.22%) to support mobility needs and all of which are typically involved in road accidents. research conducted in ethiopia by mekonnen and teshager (2014) is congruent with the finding of this study and confirmed that road traffic accidents are a major but neglected public health challenge (mekonnen & teshager 2014). opinions and perceptions of physical activity involvement in sport, exercise and other forms of leisure-time physical activity (ltpa) produces several health advantages amongst people with physical disabilities. however, the mainstream of people living with a physical disability does not partake in adequate ltpa to attain health benefits (carroll et al. 2014). it is evident and concerning that respondents’ participation in physical activity (table 3) is very low and their understanding of physical activity and its perceived benefits (table 4) is vague, reflecting a knowledge gap and a lack of public education around this aspect for people with disability. neither limb-impaired or vision-impaired individuals were sure about their frequency, intensity and duration of exercise nor of the health benefits of physical activity. whilst only 20% indicated that they like doing physical activity, only half of those (10%) confirmed regular participation in physical activity. although just more than half (53%) agreed that improved facilities are required, clearly a lack of awareness of physical activity influenced their uninformed (< 5%) response relating to the realisation that physical activity improves health status. however, past reports, even from first world countries, found a smaller proportion of adults with a disability (37.7%) compared with adults without a disability (49.4%) met the national recommendations for physical activity (cdc 2007), whilst 25.6% of people with a disability reported being physically inactive during an average week compared with only 12.8% of those without a disability (lui & hui 2009). carroll et al. (2014) reported that over the period 2009–2012, inactivity was more prevalent amongst american adults with disability (47.1%) versus those without disability (26.1%). rimmer and marques (2012) pointed out in the lancet that a lack of exercise is a serious public health concern for all people, but that people with disabilities are at much greater risk of the serious health problems associated with physical inactivity. thus, there is a sense of urgency in the promotion of physical activity amongst people with disabilities worldwide and recently rimmer (2017) as a leading disability advocate called for ‘less talk and more action’ regarding equity in active living for people with disabilities. in an african context, a study conducted in kenya by frantz et al. (2011) noticeably also showed that non-disabled children were more active than disabled learners in physical activity and sport. although the disabled learners were interacting with non-disabled children at school, they still tended to be less active. consequently, a low participation rate in physical activity and the high prevalence of secondary conditions amongst adults and youth with disabilities appears to be the norm. the results of this study are congruent with the research done by knox et al. (2013), which emphasised that differences exist in knowledge of physical activity guidelines amongst marginalised disadvantaged population groups, with them being less knowledgeable about physical activity guidelines. in an overview, novak (2017) has emphasised that even though athletes with disabilities have joined mainstream sport at a rapid rate across the world, sub-saharan africa remains on the periphery of disability sports participation. as such, according to the ethiopian legal brief (2018), the revised ethiopian sports policy of 1994 reflects no statements that addressed physical activity participation, particularly amongst people with disabilities. amusa, toriola and onyewadume (1999) have remarked that the status of the micro-economic and macro-economic stability, as well as native politics of a country, may be blamed for its non-support of a sport. when a country is in a political crisis, such as in liberia, rwanda, ethiopia, burundi, somalia and south sudan, state expenditure will consistently be turned to military efforts at the cost of sports in a nation and the situation will adversely affect the participation of communities in physical activity. conclusion in summation, the sport and development organisation (2009) has reported that developing countries are largely absent in international disability sports competitions – overall, 23% of developing countries have not joined the deaf-olympics, paralympic or special olympics world games, with africa being the region with the lowest participation rate. a recent highlight for disability sport in ethiopia was one of their para-athletes winning the bronze medal in the 1500 m t46 (loss of a single upper-limb) race category, during the november 2019 world para-athletics championships held in dubai. all things considered this was an exceptional individual achievement because, as borne out in this study, the majority of ethiopian persons with vision and limb disabilities are physically inactive and ignorant about the facility requirements and health benefits of participating in physical activity. physical activity is, however, vital in the lifespan of human populations across the social spectrum irrespective of age, gender, religion, politics and disability. accordingly, the demographic profile of potential participants in adapted physical activity should assist stakeholders, such as the ethiopian paralympic and olympic committee, and government sectors, such as the ethiopian ministry of education, ministry of labour and social affairs and the ethiopian sport commission, to increase the level of awareness and participation in physical activity amongst people with disabilities. in addition, the need for improving the accessibility of the environment for this purpose is evident and research is required to assess the degree to which the built environment in ethiopia has been adapted for physical activity and to identify other potential barriers to physical activity participation amongst individuals with a limb or vision disability. acknowledgements the authors appreciatively acknowledge the ethiopian paralympic association and the participants for their support and dr b. tlou, epidemiology bio-tatistician in public health medicine, college of health science, university of kwazulu-natal. competing interests the authors have declared that no competing interests exist. authors’ contributions all authors contributed equally to this work. funding information this research was partly made possible through a scholarship from the ethiopian ministry of education. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references advocates for human rights, 2016, ethiopia’s compliance with the convention on the 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introduction methodology findings of the study conclusion acknowledgements references footnote about the author(s) jane harrison disability studies division, department of health and rehabilitation sciences, university of cape town, cape town, south africa brian watermeyer disability studies division, department of health and rehabilitation sciences, university of cape town, cape town, south africa citation harrison, j. & watermeyer, b., 2019, ‘views from the borderline: extracts from my life as a coloured child of deaf adults, growing up in apartheid south africa’, african journal of disability 8(0), a473. https://doi.org/10.4102/ajod.v8i0.473 original research views from the borderline: extracts from my life as a coloured child of deaf adults, growing up in apartheid south africa jane harrison, brian watermeyer received: 11 dec. 2017; accepted: 08 oct. 2018; published: 24 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: over 90% of deaf parents have hearing children, but there are very few, if any, studies that have explored the life worlds of hearing children of deaf adults (codas) in south africa. this article is an account of part of the life experiences of a female hearing child who was born and raised by her deaf parents in apartheid south africa in the 1980s. objectives: this study used auto-ethnography to explore the socialisation of a female coloured coda during the height of south africa’s apartheid era, in order to shed light on intersectional influences on identity and selfhood. the study was intended to contribute to the limited knowledge available on the life circumstances of codas in global south contexts. methods: evocative auto-ethnography under a qualitative research paradigm was used to explore the life world of a now adult female hearing child of deaf parents. her thoughts, observations, reflections and involvements are articulated in a first person written narrative that is presented in this article. a thematic analysis approach was used to analyse data, and the themes that emerged are: (1) codas as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. a discussion of these themes is interwoven with the literature, in an effort to provide a rich and robust analysis that contributes to the body of knowledge. results: multiple identity markers that include disability, gender, race, age, nationality, culture and language intersect to frame the life world of a hearing child of deaf parents who grew up in the apartheid era in south africa. the result is both positive and negative life experiences, arising from being located simultaneously in both a hearing and deaf world. conclusion: this study suggests that, in part, the life world of a hearing child of deaf parents is multi-layered, multidimensional and complex; hence, it cannot be presented with a single description. recommendations that inform policy and practice are outlined in the concluding section of the article. keywords: deaf parents; hearing child; coda; identity; apartheid; south africa. introduction there is a paucity of studies that explore either the childhood or adulthood experiences of children of deaf adults (codas), particularly within african contexts, including in south africa. one of the very few studies available, by moroe and de andrade (2018) set within the context of gauteng province in south africa, highlights the lack of knowledge on the interpreting roles of codas in deaf-parented families. arising from an auto-ethnographic study of her life and written with the support of her research supervisor, who is thus a co-author of this article, this article is framed around the biography of jane, a child of deaf parents. in this section, we start off by defining the terms that form a primary part of the discussion of this article, namely deaf, coda and identity. some writers state that ‘uppercase d’ in deaf is used to describe people who identify as culturally deaf and who are actively engaged in the deaf community where they use a shared sign language (padden & humphries 1998; reagan 1995). the same authors state that ‘lowercase d’ denotes the medical condition of having hearing loss, and people who identify as deaf with a lowercase ‘d’ do not commonly have a strong connection with the deaf community and they often do not use sign language, as they prefer to communicate orally. however, some people with moderate hearing loss may choose to identify themselves as deaf and to be actively involved in the deaf community, and people who have very limited or no hearing at all may prefer to identify themselves as deaf as opposed to deaf. as noted by marzina (2017), a person can be deaf without being deaf and vice versa. there is therefore no standard definition which practically relegates relevant people to one category or the other, and hence the best way is to go by the definition that a person chooses for him or herself. ‘children of deaf adult’ (coda) is an acronym that refers to a hearing child born to one or two deaf parents. although the term has widely been used in the global north, it is fairly new to south africa. statistics indicate that only 4.4% of children born to deaf parents are also deaf (mitchell & karchmer 2004); hence, a much larger percentage of children of deaf parents are hearing. another common phrase used by hearing children born to deaf parents in referring to themselves is ‘mother father deaf’ (clark 2003). the term seeks to affirm their identification with, and belongingness to, the deaf community. representing a linguistic and cultural minority group, codas often grow up as part of the deaf community, acquiring, among other things, sign language as a first language (bishop & hicks 2005). closely linked to codas is the issue of identity, which is articulated below. identity can be viewed as a multi-faceted and evolving phenomenon that a person develops over time about who they are. it includes aspects that they have no control over, such as the colour of their skin, as well as volitional aspects such as the choices that they make in life, including how they spend their time and what they believe in (ellis, adams & bochner 2010). the same authors state that it is not uncommon for people to wonder where they fit in and to ask themselves the questions: ‘who am i?’ and ‘do i matter?’. identity formation may be a complex experience for codas, as they are part of the large hearing community, and with their parents, they may be simultaneously part of a deaf community with different norms and standards. for codas, decisions about selecting behaviours and changing self-representations can be very challenging. in order to situate jane’s narrative in the context of the study, we discuss the sociopolitical setting of apartheid south africa in the following subsection. sociopolitical context south africa’s colonial history began in 1652 with the arrival of dutch settlers; the colony changed hands several times, before the establishment of british rule in 1806 (adhikari 2006a). embedded, structural racism became a legal stipulation with the introduction of the apartheid system under the national party in 1948 (trotter 2000). consequently, the multiplicity of laws separating racial groups into immensely unequal lifestyles required that all south africans be classified into defined racial categories. the apartheid regime created, for the purpose of segregation, the categories ‘white’, ‘black’, ‘coloured’1 and ‘indian’ (which later became ‘asian’), and laws that entrenched white supremacy over other races were promulgated (trotter 2000). one can argue that racial discrimination and the separation of communities also affected people with disabilities, including deaf people. laws such as the group areas act (no. 41 of 1950) (adhikari 2006b) and the so-called homelands policy (butler, rotberg & adams 1978) of restricting all but white people to designated rural areas led to a fragmentation of deaf communities along racial lines. the group areas act also meant that non-white people were relocated, often by force, out of urban areas into townships (adhikari 2006b). one of those areas where people deemed ‘coloured’ were relocated to was the cape flats, a wind-ravaged, sandy area outside cape town (trotter 2000). ‘coloureds’ in the cape descended from slaves, the indigenous khoisan people, and intermarriage between early white settlers, indigenous africans and asian slaves (adhikari 2006a). even after 23 years of non-racial democracy, apartheid categories still reflect in economic inequalities, and they also remain prominent in how south africans view themselves and one another. the following section outlines the methodology that was adopted in undertaking this study, including the data analysis approach. thereafter, ethical principles that were observed throughout the study are outlined, followed by a discussion of the five themes that emerged from a thematic analysis of jane’s reflexive journals: (1) codas as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. presented as interrelated segments of jane’s whole life narrative, the themes are embedded with thought-provoking zones of overlap which, as mentioned in the abstract, are interspersed with the literature in an effort to provide a rich and robust analysis that meaningfully contributes to the body of knowledge. methodology this study used a qualitative evocative auto-ethnographic approach, which represents a combination of elements of both autobiography and ethnography, to draw the life narrative of jane within a context of south africa. auto-ethnography is a research and writing approach that defines and analyses personal experience of the researcher and that also seeks to understand cultural experiences (ellis et al. 2010). when one is writing an autobiography, the author retrospectively selects and writes about his or her past experiences, thereby challenging traditional research approaches that often seek to speak on behalf of other people (ellis et al. 2010). when a researcher does ethnography, he or she studies a culture’s beliefs, values, relational practices and shared experiences, with the aim of assisting both cultural members and cultural outsiders to better understand the culture (maso 2001). auto-ethnography has also been defined as a personal narrative of one’s own location in relation to others within cultural, economic, political and social contexts (spry 2001). this study explored jane’s life experiences of being a coda within a ‘coloured’ community of apartheid south africa. to enhance the scientific rigour of this study, we have therefore used both emic and etic perspectives. we have taken jane’s own views about her own experiences into account (emic) as well as drawn upon external perspectives in the form of literature and theoretical frameworks to describe and interpret the data (etic). among the various forms of auto-ethnography, jane chose to use evocative auto-ethnography, thereby enabling her to self-introspect on the subject, and to allow the readers to connect with her experiences and feelings as both the researcher and participant. the heart of evocative auto-ethnography lies in the ability of the researcher to intimately narrate and analyse his or her own narrative in relation to a particular subject (mcllveen 2008). evocative auto-ethnography permits the author to view him or herself as the phenomenon and to write an evocative narrative which is distinctly focused on his or her academic study and personal life (ellis, adams & bochner 2011). that is not to say that the researcher just writes about his or her personal experiences, but it is to say that the researcher is critical about such experiences, in the context within which the study develops (méndez 2013). according to ellis (2007), evocative auto-ethnography involves a back-and-forth movement of the researcher between reporting his or her own experiences, examining his or her own vulnerabilities, and at the same time illuminating the wider context within which the experiences took place, in an almost therapeutic way, as further discussed below. data analysis auto-ethnographic writing is embedded with some kind of self-reflexive analysis (ellis et al. 2010); hence, by writing the narrative in the first person, as illuminated in the findings section, jane was at the same time engaged with data analysis. in addition, a thematic analysis of jane’s free writings over a period of 3 years (2015–2017), in a hard copy reflexive journal, was also conducted, through reading, re-reading and manually coding data that are relevant to the topic of the study, and pulling together the codes into themes. thematic analysis is a method of identifying, analysing and reporting themes and patterns within data (braun & clarke 2006). each of the five themes that emerged from an analysis of the writings in jane’s reflexive journals will be discussed later on in this article, under the section which presents and discusses the findings of the study. ethical considerations ethical approval was sought from the institution of study, the university of cape town (536/2017). informed consent was obtained from family members who feature in the biography, albeit without generating data from them. the principle of no harm to participants was considered for jane who is both the researcher and participant in the study, as well as additional persons who are mentioned in the story but are not participants. confidentiality was upheld by concealing names of additional characters who are ‘active’ or ‘passive’ in the story. considering that there is a paucity of studies of the life experiences of codas in south africa, this study represents a voice for other codas who did not participate in the study but who may share more or less similar experiences. in addition, the study makes a significant contribution to the body of knowledge and it offers recommendations that inform policy and practice. findings of the study the findings of this study are primarily the narrative of jane, which is presented and discussed below, beginning with the subheading ‘my life: an introduction’. thereafter, the story unfolds under five main themes that emerged from both jane’s reflexive analysis while writing the story and thematic analysis of her reflexive journals. we mention the five themes again, so as to refresh the memory of the reader on what they are: (1) codas as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. as previously mentioned, the narrative is written in the first person but it is also interwoven with the literature, in an effort to strengthen the analysis, thereby contributing to the existing body of knowledge. my life: an introduction i am the eldest of two children born to deaf parents in cape town, south africa, and just like my sister, i am hearing. we both sign and south african sign language (sasl) is our first language. on my father’s side of the family, a few relatives can sign, but most if not all of my mother’s family members cannot sign, meaning that her family is not able to communicate with her in appropriate ways that suit the nature of her impairment and that of her husband (my father), and that is where i, a coda, fit in. when i was below the age of 5, and when most toddlers were exploring their life worlds and playing with peers and toys, i was being trained to become the mouthpiece and ears of my parents. that meant assuming some form of adulthood roles and responsibilities in ways that affected my life in both positive and negative ways. remembering my early childhood years in south africa, i think about a drum magazine issue of september 1983, which carried a story of a young girl and her deaf parents, under the caption ‘a little happiness in a silent world’. the story depicts the girl as a ‘bouncing ball of happiness’, alongside comments that allude to the fact that while the parents live in a ‘world of silence’, they are ‘compensated’ by the birth of their ‘perfectly normal’ daughter. i feel that when i was a child, people had the same views about me, in a scenario where a coda often assumes the role of sign language interpreter at an early age. the narrative of the girl in the magazine indicates that she was also described by society as some form of ‘emotional support’ or ‘compensation’ to her ‘damaged’ parents – a depiction which carries both disablist ideas about deaf people, and a weighty emotional duty for their hearing children. coloured affairs, 1981 as an adult, i found myself walking along the long corridors of the civic centre in parow, a working class cape town neighbourhood, when a familiar stench penetrated my nostrils, awakening perplexing memories and emotions from decades before. suddenly, i was a small child walking down the corridor of the coloured affairs office. we approach a desk where a plump, stern-faced woman asks, ‘ja, hoe kan ek help?’ (‘yes, how can i help?’). i look at my mother who signs to me ‘tell her why here, need help why, problem with disability have’. i relay the message to the woman behind the desk and almost immediately the expression on her face changes, from stern to ‘oh shame!’ (a south african expression of sympathy). her voice is filled with pity as we are handed a piece of brown paper with our ‘unique’ number and shown to our seats. i could hear the murmuring voices of agitated people waiting to be helped, along with the subtle whispers of ‘shame’. everyone stares at us, rows and rows of coloured people waiting for their number to be called. the stench i recall is what i refer to as the ‘poor coloured smell’ – a mixture of poverty, stale tobacco and smouldering fire, coupled with the smell of weak tea and peanut butter. the smell brings emotions from a deep-rooted place, and that day in parow the smell left me feeling sick to the core. i stayed home from work for the next 3 days to avoid having to go back there. it became clear to me that this was one of the many distressing memories that i have tried to suppress over the years. from my own perspective, ‘procedures’ for ‘determining’ one’s race under apartheid were nonsensical. according to the infamous ‘pencil test’, if a pencil placed in one’s hair did not fall out when released, this was evidence of belonging to the ‘black’ race. despite the fact of this ‘in or out’ categorisation, the coloured identity itself has been associated with ambiguity (petrus & isaacs 2012). a discourse that classifies ethnicity and race has a great role to play in the production of certain kinds of identities, and when such identities are provided with everyday meanings, they become real (erasmus 2001a, 2001b). coloured-ness is viewed by some people who self-identify as coloured people as a coherent cultural identity, and not a social construction imposed by the apartheid regime, but to some individuals, the identity is imbued with shame and uneasiness about ethnicity (hendricks 2001). the same author states that whatever one’s stance, it seems fair to say that the history of coloured identity has been heavily shaped, on the one hand, by racial oppression imposed by the nationalist regime, and, on the other hand, by the cultural creativity shown (in part, as a response) by coloured people themselves. as an adult, i am constantly aware of how coloured people are perceived by society. on a recent trip to johannesburg, i was involved in a meeting with a group of students. on the second day, one of the students asked, ‘are you sure you are coloured and from cape town?’ i responded, ‘why?’ the person began to speak about a show performed by a popular south african comedian who is from a mixed-race family, and he even started to act out some of his sketches. i responded by saying that ‘we are not all like that…not all coloured people speak like that’. the exaggerated coloured stereotype often portrayed in the media is of people with no front teeth and a ‘funny’ accent. as i reflect on my early childhood years, which were characterised by rampant racial discrimination, i remember the following incident. ‘whites only’ i am 5 years old and we are standing on the train station on our way to hospital for my mom’s antenatal visit. a big maroon and yellow locomotive pulls into the platform. i indicate to my mom that i want to get into the carriage and she points to a board on the train that says ‘whites only/net blankes’. we walk to one end of the platform, to a carriage with a sign that says ‘non-whites/nie blankes’. always obedient, i take hold of my mom’s hand as we board the train. the train ride was uncomfortable; the plastic seats were hard. however, i was now looking forward to the outing with my mom, and had forgotten the sign, and that we were not able to enter the ‘whites only/net blankes’ carriage. but later, the experience sparked many questions in my mind – ‘why were we not allowed on the train? what did “whites only” mean?’ to this day, the memory of my experiences of that day is still vivid in my mind. in terms of identity, i see myself as a south african first, then a female and thereafter i am ‘statistically’ coloured. the colour of my skin in this democratic dispensation does not define me as a person, as i am free to assert my own humanity. however, as the reader of this article, you will recall that i said earlier on that i experience my coloured-ness as an unchangeable part of myself. all of the cultural meanings and stereotypes associated with the word ‘coloured’ imposed by the apartheid government are inescapable to me, as they are very much alive in my family and community. to me, being coloured is more than genetic makeup, racialised politics and culture; to me, it also signifies shame, poverty, exclusion and never having escaped the oppression of the apartheid regime. in 1983, marietjie de klerk, who would later be first lady to f.w. de klerk, described the coloured community as ‘the people that were left after the nations were sorted out. they are the rest’ (adendorf 2016). theme 1: children of deaf adults as language brokers more than describing who i am, the term ‘mother father deaf’ gives me access to the deaf world. recently, while passing a cell phone shop, i noticed a couple frantically signing away to the counter staff. i observed a need for assistance. approaching the couple, i drew their attention by tapping one of them on the shoulder and greeted them with ‘mother father deaf, me hearing’. they immediately responded with a smile and asked me the name of my parents and what school they attended. these are important details during such an introduction. thereafter, i asked if i could assist with interpreting and without hesitation they agreed. in this interaction, i was assuming the very familiar role of an interpreter and language broker, bridging a linguistic and cultural divide between the deaf and hearing worlds, a role that i have played since my early childhood. in a study of the life experiences of codas, preston (1994) found both positive and negative accounts of what it is like to share in deaf culture. in his analysis of gendered roles in codas, he identified that it is most often the eldest female child who takes on the role and responsibility of family interpreter. while my sister and i are both fluent signers, the role of interpreter was assumed by me. i presume that is what is common among codas; witnessing the breakdown of communication between deaf and hearing worlds virtually compels one to take up the role of interpreter. but while codas are being praised for their roles within the family, a key question is how they, themselves, experience this, and how it impacts on the trajectory of their lives – issues which are rarely explored, hence my quest to pursue this auto-ethnographic study. theme 2: being bilingual and trilingual my mother was my first teacher, and she exposed me to spoken language by using sasl and english together. she would mouth the english words, while also finger spelling, speaking and signing at the same time. i used sasl from early on in my life and i identify as a native signer. having equivalent proficiency in each, i see sasl and english both as first languages, but still, sasl is our home language, while english is the first language of my hearing identity. my vocabulary was further complicated as i progressed from being bilingual to trilingual, when my mom began teaching me to speak afrikaans, which was her family’s first language. it was also a language imposed on coloured people during the apartheid regime. hence, i acquired three languages as a child. my mother has always been proud of the fact that i am fluent in three languages, and that i am able to interpret everything that is said in her presence. some studies show that children who grow up in bilingual settings are able to navigate two languages before the age of 2 (deuchar & quay 2000; nicoladis & genesee 1996). napier, rohan and slayter (2005) suggest that the languages of bilinguals later alter with their evolving life circumstances. hearing children born to deaf parents are considered bilingual and bicultural, as they potentially share the language and culture of their deaf parents. singleton and tittle (2000) point out that codas are also hearing individuals, and will inevitably acquire the dominant, spoken mode of communication and become members of the hearing community. while i was growing up, my parents were referred to by others as ‘deaf and dumb’. i would often hear people refer to them as ‘dommies’ (dummies) – people who spoke broken english and had funny voices. consequently, my sister and i were seen to have speech problems, and our hearing was tested regularly. i knew that behind the scenes, i was also referred to as ‘dumb’ – after all, that is how my own parents were viewed. i do not believe that i had significant problems with my speech development, but i do recall having a lisp and being teased for it. this, and the fear of being called dumb, led me to start practising my speech each day. i began to make sure that i pronounced each word in my head first before i uttered it. this had a profoundly negative effect, as i could hardly answer any questions in class for fear of mispronunciation or lisping, but my grades were always good. i would always first need to visualise the sign in my head before being able to utter the word from my mouth. i often found it difficult to express myself and the same challenge has perpetuated into my adult years. i do not think my teachers ever noticed that i was fingerspelling words underneath my desk during tests. i would sign to myself, in order to make sense of what i was reading. knowing sign language, it seems, was good for my grades! but it also caused me to turn my confidence inwards, rather than expressing it openly. i might know the word in my head, but my mouth simply would not utter it. on reflection, i attribute this scenario to what burton (2015) describes as the presence of confidence but the absence of self-esteem, which in my case could have resulted from the stigma that i experienced because of the deafness of my parents. as an adult, i find it difficult not to speak with my hands, as i feel that using spoken language is not enough – that my words are not expressive enough. like a painter expressing myself on canvas, i need my audience to see what i am saying. frank (2014) states that, because hearing children in deaf families are typically visually oriented learners, processing information orally rather than visually may be a challenge for them. similar to the findings of a study undertaken by singleton and tittle (2000), from my early childhood years, my use of language has been changing along with a changing environment, or simply as the need arises. according to my mother, i was fluent in sasl by the age of 2, and by 4, i was a fully-fledged family interpreter, often filling the role of sole communicator with the outside world. i became the voice of the doctor, nurse, school teacher, social worker, grandparents and anyone else who could not communicate directly with my mother and father. because of this, i was regularly exposed to situations that exceeded my level of maturity at any given time, forcing me to function as an adult while still a child. my usefulness as an interpreter depended on my having achieved fluency in sasl. according to research, when codas do not become fluent signers, their communication with their own parents is likely to be limited and ‘superficial’ (hadjikakou et al. 2009). theme 3: being bicultural in my ‘bicultural’ positioning as a coda, i have had to recognise that i am not deaf, but i am also not hearing. in addition, my racial identity is located, to some at least, on a borderline. all who grew up under apartheid were subject to a cultural and legislated set of racial descriptors which determined who, what and where one ought to be. as a consequence, i live with a complex pattern of difference, and it is this difference which i now try to examine in this auto-ethnographic study. bull (1998) noted that the confirmation and acceptance of personal and cultural identity of codas may only occur in adulthood after encountering people with similar demographics. until that point, codas may remain confronted with a split between two worlds, and in their own identity. whether d/deafness is defined on the basis of hearing ability or cultural affiliation, both definitions set up a dichotomy between h/hearing and d/deaf, such that in some instances, being one means not being the other (pizer et al. 2015). preston (1994) noted that many codas only realise their difference at schoolgoing age – a realisation that probably signals the beginning of confusion or conflict regarding self-identity. singleton and tittle (2000) make the provocative statement that ‘deaf parents are essentially raising “foreign” children’ (p. 27). the implication here is that, while parents are part of the deaf community, their children are bicultural and bilingual, with access to cultural and community life outside of the ‘deaf world’. personally, i have always felt different, but the same. i grew up in two worlds – different to my parents, but bound by a culture which separated me from my peers, to whom i was, in turn, bound by hearing, and society’s definition of normalcy. preston (1994) found that most codas understand deafness as a negative experience, and a disability, besides being a cultural minority. having to traverse these different, and differently valued, worlds can create conflict and struggle in the children of deaf parents. theme 4: role reversal and ‘parentification’ always accompanying my mother wherever she went meant i seldom had the chance to be myself. my father converted the space in front of our door into a play area for me – that way, i was always nearby. i outline below the role reversal and parentification experiences i had with my mother; i reserve those that i shared with my father for another publication, in order not to take this article beyond its requirements in terms of length. fallopian tubes i am 5 years old and my mother and i are at the hospital after the birth of my sister. the issue was that she had the option of undergoing sterilisation, and i had to interpret the conversation. questions and answers flew, and while i also had to concentrate on allaying my mother’s fears, reassuring her that ‘it will all be ok’, some of the words were long, like ‘fallopian tubes’, and besides, i wanted to be playing with my dolls. but i had to focus – i was the only person my mother trusted. my role came with responsibility, but also with power, regardless of whether i wanted it or not. this reversal had a profound effect on my relationship with my parents. my parents played their role of providing well for my needs, but there were always situations in which i had to take charge, young as i was. ambulance i was 12, and my 7-year-old sister was playing at a neighbour’s house. i heard someone shouting at the gate, saying that my sister was hurt. her finger had been closed in a door, and was bleeding terribly. my first response was to tell my mother, then i ran to my sister’s side. crying and in shock, i asked the neighbours to call an ambulance, as we did not have our own car to take her to the day hospital. when the ambulance arrived, we were told that only one person could accompany my little sister. without hesitation, i climbed into the ambulance. there was no doubt that i had to be the mother; no doubt that it was my responsibility to make sure that my sister was taken care of. even if my mother was able to accompany her, there would still be the challenge of communication barriers. she would struggle to communicate with the nursing staff – resulting in frustration, or even humiliation, in a health care environment which is ridden with numerous barriers, including non-sign language using staff; i had to protect my mother from this. terrible news it is the weekend and our family home is unusually quiet. the mood is sombre; death is lurking on our doorstep. unbeknown to my mother, my grandfather has been admitted to hospital after his fishing vessel capsized and he had nearly drowned. my mind is racing with thoughts about how my mother will react. my mother’s father is everything to her, but it is my responsibility to tell her what has happened, that her beloved father is gravely ill. i consider a dozen different ways to tell her; ‘why must it be up to me? why can’t her siblings break the news?’ i think about lying, and saying that he is just in hospital and will be ok. but then that is deceiving her, and she relies on me for the truth. my grandfather and i have always been close – my confidante and counsellor, and an important parental figure in my life. inside, i am frantically praying that god will not take him away; there is no one who understands me like he does. but then i should not shed any tears, because any moment from now i could be called. as i enter the house, i look at my mother’s face, and i see she is looking confused and angry: ‘what is going on?’ she asks. i relay the message, my own emotions held at bay. my mother begins to cry hysterically, asking between sobs whether he will be ok, and saying that i have to tell her the truth. buchino (1993) describes role reversal as ‘when the child feels responsible for the parent and the parent expects them to be responsible’ (p. 44). however, it is important to note that parents are often concerned about the effect that the role of interpreter has on their hearing children (torres 2003). the role that i assume as a coda is one that silently speaks about protection and responsibility – i am constantly aware that nobody understands my parents. while codas are different to their parents in that they can hear and speak, respondents in a study undertaken in the usa among adult codas indicated that they are often disappointed by the common negative societal practices that marginalise them (preston 1994). in other words, respondents felt the need to protect their parents against insults and negative views about deaf people. preston described them as ‘repositories of their hearing grandparents’ and parents’ untold stories’ (p. 67). there is also evidence of codas taking on parental responsibilities, such as looking after the finances, health and everyday challenges that a family faces (orellana, dorner & pulido 2003), leading to opaque, co-dependent relationships and unclear family hierarchies. being a parental child in the face of apartheid returning to the issue of my coloured identity, my supervisor/co-author was curious about the interaction between caring for my parents’ vulnerabilities which are engendered by disablism, and those more based in apartheid’s structural racism. subjectively, othering based on these different personal aspects is likely to merge and become indistinguishable. at the coloured affairs office, one is both coloured – with all that it meant in the south africa of the 1980s – and disabled. in protecting my mother from the humiliations of disablist othering, i was also holding, for her, vulnerabilities to do with racism. my final anecdote brings these two devalued identities together. part of what codas do, it seems, is to hold their parents through oppression. in my case, that oppression took at least two forms, leaving me, as a child, to somehow respond to or repair the contradictions of our distorted society. theme 5: issues of identity raised in both hearing and deaf worlds, i was exposed to the politics and practices of both worlds. as i have said before, when introducing myself to deaf people using sasl, i often say ‘mother father deaf, me hearing’ in order to gain acceptance. by contrast, when meeting hearing people for the first time, i do not introduce myself as a hearing child of deaf parents. i just introduce myself as me – our shared normalcy, and our ‘fitting together’, is assumed. enculturated into the deaf world, i grew up part of the deaf community, but in relation to education, communication and a host of forms of exclusion and discrimination, i do not have the same experience. my experience is not that of deafness, but of having the experience of my parents of deafness being somehow imposed on my life. evidence shows that not all codas see themselves as being either hearing or deaf; some regard themselves as being deaf, even though they can hear (preston 1994). so… who am i? so am i a hearing person raised in a deaf community or a deaf person trapped in a hearing body? i am somewhere in-between, holding onto conflicted emotions. i have known from a young age that my family is different, but i never saw myself as being different to my parents. i always believed that i was special as that was the response from the hearing world. people would make comments such as: ‘what a special girl she is’ or ‘you are so lucky’. lucky to have deaf parents or lucky that i was born with normal hearing? are they suggesting that my parents are unlucky to not have normal hearing? i often wondered. in school and meetings between my parents and teachers, i was the only child who had to interpret the meeting and not just deal with my academic progress. and then i had to deal with sympathy, beginning with the repeated ‘oh shame!’ from parents of schoolmates. despite the fact that i would have a packed lunch every day, my teachers would often share their lunch with me, saying, ‘it’s important for you to have a good meal every day’. i could not say no! yes, we were poor and we lived in a wood and iron house without electricity, but the bottom line is that i was well taken care of. my understanding is that this ‘kindness’ was part of my family’s stigmatisation by the hearing community. we were seen as worthy of pity when, in fact, we were just like them, except we spoke with our hands. negative attitudes towards my parents were also directed at me. faced with this experience, i would wander between my two identities, feeling trapped on the periphery of both cultures. yes, i may be hearing, but i am proudly deaf, and then there is the little girl smothered inside. conclusion as noted above, the themes that emerged from this study are: (1) codas as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. the themes show that the life world of a female, coloured coda within a south african context is complex, multi-layered and multidimensional. the result is negative and positive experiences that are influenced at most by the intersection of various identity markers that include disability, gender, race, age, nationality, culture and language, within a synchronised hearing or deaf world. as shown in the themes discussed above, and from as early as the age of 5 and as a coda, jane manages far more than just communication in her mediating role, as diverse situations often call upon her to contain a host of vulnerabilities that are lived not only by her, but also by her deaf parents as well, in a scenario that is predominantly characterised by role reversal and parentification. she is charged with making sense of, or somehow digesting, the ills and inequalities of society, as these are channelled through the oppressive treatment of her deaf parents, including in their effort to gain access to health care and social services. as revealed by the discussion in theme 4, the department of health in south africa appears to offer blanket services that do not cater for the appropriate communication needs of deaf adults. consequently, codas who are as young as the age of 5 end up having to be interpreters and language brokers between their parents and health care staff, including in situations where sterilisation and fallopian tubes are discussed among adults. such a scenario can be burdensome to young children, to the detriment of their psychosocial and general well-being. there is need to formulate policies that direct adult sasl interpreters in the form of family or community members to accompany deaf people to service providers. but then again, some family members may be uninterested in learning to use sign language. the department of health should therefore consciously recruit and train deaf people, thereby enabling them to bring positive change to service provision. in any case, a health care practice which is not multidimensional is likely to fall far short of reaching all vulnerable groups, including deaf people. civil society, organisations for people with disabilities and adult codas need to work together to raise awareness regarding the complex location of codas within hearing or deaf communities, thereby reducing obliviousness or unresponsiveness to the subject. indifference may mean permissiveness or tolerance of ‘using’ minors as interpreters, language brokers and mediators in adult affairs, thereby sending a strong but inappropriate message to families, communities and various service sectors. honikman et al. (2012) argue that raising children is a serious matter; hence, ‘burdening’ children with responsibilities that are not in sync with their age may result in compromised childhood development of codas. in any case, today’s children are the citizens of tomorrow’s world; their survival, protection and development is the prerequisite for future development and humanity. we call upon other scholars to undertake further research which locates the experience of codas within particular social and political contexts, thereby further contributing to this body of knowledge. acknowledgements i dedicate this article to my parents – i am who i am because of them. thank you for teaching me the true meaning of being resilient, to persevere, to work hard and for showing me the beautiful way of deaf culture. thank you dr brian watermeyer and my family for your unwavering support, guidance, patience and encouragement on this journey. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions the article draws on the master’s research of j.h., which is an auto-ethnographic study of her experiences as a coda, growing up in apartheid south africa. b.w. is j.h.’s research supervisor, and the project was co-conceived. j.h. wrote the first draft of the article based on journals she has kept through the process, which was then enriched and elaborated in supervision discussions with b.w. j.h. then made additions to the article. b.w. then performed a full revision and edit in preparation for submission. funding we wish to acknowledge the south african national research foundation for supporting this research. references adendorf, l., 2016, ‘there’s no such thing as a coloured identity’, cape argus, viewed 20 october 2017, from https://www.iol.co.za/capeargus/theres-no-such-thing-as-a-coloured-identity-2058521 adhikari, m., 2006a, ‘hope, fear, shame, frustration: continuity and change in the expression of coloured identity in white supremacist south africa, 1910–1994’, journal of southern african studies 32(3), 467–487. https://doi.org/10.1080/03057070600829542 adhikari, m., 2006b, ‘“god made the white man, god made the black man…”: popular racial stereotyping of coloured people in apartheid south africa’, south african historical journal 55(1), 142–164, https://doi.org/10.1080/02582470609464935 bishop, m. & hicks, s., 2005, ‘orange eyes: bimodal bilingualism in hearing adults from deaf families’, sign language studies 5(2), 188–230. https://doi.org/10.1353/sls.2005.0001 braun, v. & clarke, v., 2006, ‘using thematic analysis in psychology’, qualitative research in psychology 3(2), 77–101, viewed 19 june 2018, from http://eprints.uwe.ac.uk/11735 buchino, m., 1993, ‘perceptions of the oldest hearing child of deaf parents: on interpreting, communicating, feelings and role reversal’, american annals of the deaf 138, 40–45. https://doi.org/10.1353/aad.2012.0598 bull, t., 1998, on the edge of deaf culture. hearing children/deaf parents (annotated bibliography), deaf family research press, alexandria, va. burton, n., 2015, self confidence vs self esteem, viewed 14 march 2018, from https://www.psychologytoday.com/intl/blog/hide-and-seek/201510/self-confidence-versus-self-esteem butler, j., rotberg, r. & adams, j., 1978, the blacks homelands of south africa: the political and economic development of bophuthatswana and kwa-zulu, university of california press, berkeley, ca. clark, k., 2003, children of deaf adults: communication and parenting issues in families with deaf parents and hearing children, viewed 17 november 2011, from http://www.lifeprint.com/asl101/pages-layout/codas.htm deuchar, m. & quay, s., 2000, bilingual acquisition: theoretical implications of a case study, oxford university press, new york. ellis, c., 2007, ‘telling secrets, revealing lives: relational ethics in research with intimate others’, qualitative inquiry 13(1), 3–29. https://doi.org/10.1177/1077800406294947 ellis, c., adams, t.e. & bochner, a.p., 2010, ‘autoethnography: an overview [40 paragraphs]’, forum qualitative sozialforschung / forum: qualitative social research 12(1), 1–13. ellis, c., adams, t.e. & bochner, a.p., 2011, ‘conventions and institutions from historischer perspective’, historical social research/historische sozialforschung 36(4), 138, 273–290. erasmus, z., 2001a, ‘introduction: re-imagining coloured identities in post-apartheid south africa’, in z. erasmus (ed.), coloured by history, shaped by place. new perspectives on coloured identities in cape town, pp. 3–23, kwela books, cape town. erasmus, z. 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an embodied methodological praxis’, qualitative inquiry 7(6), 706–732. https://doi.org/10.1177/107780040100700605 torres, m.t.w., 2003, ‘a phenomenological study of the parenting experiences of deaf adults’, phd thesis, our lady of the lake university. trotter, h., 2000, ‘“what is a coloured?”: definitions of coloured south african identity in the academy’, (unpublished paper in possession of the author, yale university), 11–12, 21. footnote 1. while the term ‘coloured’ was part of the oppressive system of racial classification under apartheid, it has also been adopted by a large community of south africans who self-identify as ‘coloured’ people. this community is concentrated in the western cape and northern cape provinces, and is largely afrikaans speaking. article information author: wisdom k. mprah1 affiliation: 1department of disability and human development, university of illinois at chicago, united states of america correspondence to: wisdom mprah postal address: 1640 west roosevelt road, chicago 60608, united states of america dates: received: 15 jan. 2013 accepted: 24 june 2013 published: 27 aug. 2013 how to cite this article: mprah, m.k., 2013, ‘knowledge and use of contraceptive methods amongst deaf people in ghana’, african journal of disability 2(1), art. #43, 9 pages. http://dx.doi.org/10.4102/ ajod.v2i1.43 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. knowledge and use of contraceptive methods amongst deaf people in ghana in this original research... open access • abstract • introduction • overview of deafness in ghana • methods    • study design    • population and sample    • sampling strategy    • reliability and validity of the data    • data collection and analysis       • focus groups       • survey    • ethical issues • results    • focus groups results    • survey results • discussion • policy and programmatic implicatio • conclusion • acknowledgements    • competing interests • references abstract top ↑ background: persons with disabilities in general face serious barriers to sexual and reproductive health (srh) information and services due to institutional and attitudinal barriers. however, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people. objectives: the objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in ghana with the aim of understanding their contraceptive behaviour and to improve access. method: the study was a participatory srh needs assessment utilising a two-phase, sequential, mixed methods design. the study included 179 participants, consisting of focus groups with seven executives of ghana national association of the deaf (gnad), 10 male deaf adults, and 9 deaf female adults. a total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant. results: the findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. level of knowledge of the remaining nine methods was low. conclusion: clear and effective policies are needed to guide the provision of srh information and services for deaf people in ghana. introduction top ↑ contraceptive knowledge and use are important indicators of access to sexual and reproductive health (srh) information and services (ghana statistical service, ghana health service & icf macro 2009). knowledge and usage of contraceptives are also important for determining attitudes towards and awareness about risks associated with pregnancies and sexually transmitted diseases (stds). many studies have established that knowledge of methods and sources is a key factor governing effective use of contraceptives (biney 2011; longwe, huisman & smits 2012; small et al. 2009). having good knowledge reduces misconceptions and fears about contraceptives and creates positive attitudes towards use; generally, the more knowledge people have, the more likely they would accept and use contraceptives (biney 2011; longwe et al. 2012; narzary 2009; small et al. 2009). for example, lindstrom and hernandez (2006) observed that lack of knowledge was commonly cited for unmet needs and limited choice of contraceptives amongst rural or urban migrants in guatemala. similarly, biney (2011) reported that a major reason for not using contraceptives amongst women in ghana was lack of knowledge or misunderstanding of contraceptives. it has also been established that engaging in risky sexual activities often led to unintended pregnancies, unsafe abortions, and sexually transmitted infections (stis) (biney 2011; poku 2008). the use of effective contraceptive methods is thus crucial for preventing unintended pregnancies and unsafe abortions. when used properly and consistently, the barrier methods (e.g. condoms) would serve the dual purposes of preventing unintended pregnancies and stis including hiv, whilst the non-barrier methods would prevent unintended pregnancies (poku 2008; small et al. 2009). although little is known about the level of knowledge and use of contraceptives amongst persons with disabilities, including deaf people, they are less likely to have knowledge of and use contraceptive methods than persons without disabilities. this is due to information barriers they encounter when accessing services on srh issues. these barriers are related to ignorance about the unique needs of persons with disabilities, negative attitudes, and lack of services tailored to accommodate their needs (groce 2004; wilson & monaghan 2006; world health organization [who] 2009). sexual and reproductive health information is often not provided in accessible formats or tailored to cater for the needs of people with disabilities. for example, the lack of information in accessible forms such as braille, large print, simple language, pictures, and sign languages, deprive access to those with visual, hearing, and intellectual disabilities (who 2009). low literacy levels amongst persons with disabilities compound the issue of access. many people with disabilities in developing nations have limited formal education, lack access to srh education in schools or/and inadequate health literacy after school (groce 2004; who 2009). in addition, their disabilities may limit their chances to interact with their peers, which would be an important opportunity for informal learning about reproduction and sexuality (haseltine, cole & gray 1993). moreover, they are rarely included in srh prevention and outreach programmes due to misconceptions about their sexuality (job 2004; wilson & monaghan 2006; who 2009). adolescents with disabilities face particularly severe challenges because it is often difficult for parents, educators, and counsellors to broach the subject or they are perceived as sexually inactive (job 2004; prilleltensky 2004). consequently, many young people with disabilities are not familiar with basic vocabularies about their bodies, cannot describe what is happening to them and are therefore at high risk of srh problems and sexual exploitation (groce 2004; who 2009). the available data in ghana indicate a wide gap between knowledge and practice on issues relating to srh amongst ghanaians (ghana statistical service, ghana health service & icf macro 2009). national and local surveys do not have data on persons with disabilities, including people who are deaf and hard of hearing. it is therefore impossible to determine the srh status amongst people who are deaf and hard of hearing in ghana. their situation is likely to be particularly bad as they have limited access to mainstream information (ministry of employment and social welfare 2000). not only is it difficult to access such information, it is very likely that informal sources such as friends and family members are inadequate and unreliable. due to the nature of ghanaian traditional values, issues of sex are shunned within the family, so families are seldom major sources of sexual and reproductive information (mensch et al. 1999). the government and various stakeholders have recently stepped up efforts to increase knowledge on srh issues. some key government strategies to address srh issues in ghana are the formulation of policies such as the ghana population policy, the adolescents reproductive health policy and the national hiv/aids and sti policy. research has also been done to identity groups at high risk for srh problems, poverty reduction and increased access to information (hessburg et al. 2007). the main aim of these strategies is to design effective policies, to better understand the srh behaviour of ghanaians and to empower individuals to make independent and informed decisions on their sexuality and reproduction. however, these efforts are unlikely to reach the deaf population in ghana as the general target is the hearing population. in addition, negative perceptions about deaf people and lack of societal understanding of their concerns have contributed to the disregard of deaf people’s needs in srh policies and service delivery. the few srh studies and programmes for deaf people have focused mainly on hiv and aids with little information on their level of knowledge or use of preventive measures such as contraception. understanding the level of knowledge and use of contraception is important for policy-making and programme designing for the deaf community. the objective of this study was therefore to investigate the level of knowledge and use of contraceptive methods amongst deaf people in ghana. the aim was to gain insights into the contraceptive behaviour of the deaf community so as to inform and redirect future action plans and policies. the study proposed the following question: what is the level of knowledge and use of contraceptive methods amongst deaf people in ghana? in answering this question, the study employed two data collection techniques: focus groups to allow an in-depth exploration of deaf people’s views on the subject and to develop a survey instrument, and then implementation of the survey for further exploration of views in the larger deaf community. overview of deafness in ghana top ↑ very little is known about the demographic characteristics of deaf people in ghana because population censuses and studies that collect demographic information do not separately identify deaf respondents. however, ghana national association of the deaf reported having 6000 registered members in 2007, of whom 2400 were females and 3600 were males. this number comprises only those who have voluntarily registered with gnad and presumably represents only a very small portion of the total deaf population in ghana (johnson mahama, pers. comm., 20 march 2010). generally, deaf people are distinguished from the hearing population not only by their hearing loss but by their distinct cultural and linguistic characteristics, which include a communication system that is different from spoken language, as well as cultural values that are different from those found amongst hearing people (sparrow 2005; tucker 1998). for example, whereas individualism is a dominant cultural pattern in the hearing population in the usa, collectivism is dominant amongst deaf people. members of the deaf community often consider themselves as a close-knit and interconnected group (ladd 2003). in some western countries such as the usa, there are two main deaf cultural perspectives: the medical and the cultural. whilst the medical refers to deafness as impairment, the cultural model defines deafness in terms of a cultural identity. a traditional impairment perspective would describe deaf persons who do not identify with a separate deaf cultural identity and have been acculturated and assimilated into hearing society (tucker 1998). they are deaf individuals who are considered clinically deaf and persons with disabilities (burch 2004; edwards 2005). deafness in this case is perceived primarily in terms of the underlying medical pathology (corker 1998; tucker 1998). on the other hand, deaf people, who subscribe to the cultural identity construction do not consider themselves as persons with disabilities and perceive deafness as a cultural phenomenon rather than a disability. in other words, they define deafness as a linguistic and cultural experience instead of impairment (padden & humphries 2005; tucker 1998). the inability to hear is essentially parallel to a hearing person’s ignorance of the sign language of the deaf community: a social disadvantage rather than a physical disability (crouch 1997; tucker 1998). there is very little documentation about deaf identity in ghana. my experience with the deaf community and the little that has been written on deaf people in ghana suggests that the concept of deaf identity is relatively new and limited to the few who have attained some formal education. in fact, the american notion of impairment versus cultural identity construction does not exist in ghana. generally, deaf people in ghana do not differentiate between those who view deafness as a clinical impairment and those who see it as a cultural group. all individuals who have some hearing difficulties are considered members of the deaf community irrespective of one’s ability to use the general sign language (gsl), age of onset of deafness, school attended, or family background. however, there are important categories of deaf people within ghana’s deaf community: the hard of hearing, those without formal education who are unable to use the gsl, and those who live in a village called adamrobe, a community with an unusually large number of deaf people caused by heredity deafness. deaf people in this community have developed their own sign language, the adamrobe sign language (adsl), which is different from the gsl. however, no effort has been made to date to differentiate these groups. whilst deaf people’s membership of ethnic minority has influenced their health status (jones, renger & firestone 2005) and may also influence their knowledge and use of contraceptives, the study did not investigate if and how this affected deaf people’s attitudes towards conceptive use. methods top ↑ study design the study was a participatory srh needs assessment targeting only deaf people who were fluent in the gsl in ghana. the study utilised a two-phase, sequential, mixed methods design, consisting of three focus groups to assist in the development of a survey and then the implementation of the survey for needs assessment data collection. review of documents, discussions with a srh worker, and observations helped to clarify data gathered from the focus groups and survey. the focus groups allowed an in-depth exploration of themes to identify srh issues that were important for the development of the quantitative (survey) instrument. the survey phase was conducted to document needs related to these themes within the deaf community. the mixed methods approach facilitates triangulation of data collected on the same issue, which often helps researchers develop a deeper understanding of the issue being investigated (creswell & plano clark 2007). triangulation allows the researcher to complement the differing strengths of quantitative and qualitative methods (creswell & plano clark 2007). for example, demarest, holey and leatherman (1984) used surveys, interviews, and records to assess the educational needs of hospital nursing staff. participants were randomly assigned to either survey or interviews. a key finding from the study was that the three data collection techniques resulted in different needs. according to the researchers, even though it was more expensive to collect data from multiple sources, they gained a fuller understanding and were better able to interpret the results than if they had relied on only one source. the complexity of srh issues in ghana presents similarly complex data collection and interpretation challenges. population and sample a total of 179 participants were recruited for the study, of which 26 were focus group participants, 152 survey respondents, and one person who served as a key informant. these were the people willing to participate in the study. also, it was difficult getting eligible volunteers (deaf people with formal education) for the study. all participants except the key informant were members of the deaf community and were considered well informed about issues in the community. participants comprised all persons who were deaf or hard of hearing and who were fluent in the gsl. lack of formal education was an exclusion criterion since formal education is required to use the gsl. communicating with this non-gsl group would have required learning the local language such persons developed to communicate within their communities; this would have been a serious logistical challenge since ghana is a multilingual society. moreover, users of gsl were more likely to have used or had attempted to utilise srh information from education programmes that disseminated material through magazines, posters, online materials, and brochures, and thus were more likely to have better understanding and experiences to explain challenges deaf people encounter when accessing srh information and services. participants were recruited from two communities in ghana: tamale, a city from the northern zone and accra from the southern zone of ghana. the intent in selecting these communities was to sample respondents with diverse characteristics so that views from people with different perspectives on the topic could be represented. tamale and accra represent the northern and southern sectors of the country, which reflect important differences in culture and socio-economic development. the northern sector is generally poor and characterised by poorly developed infrastructure and harsh climatic conditions as compared with the southern sector (berry 1995; national population council 1994). specific locations where participants were recruited from in the two cities were a deaf senior high school, deaf churches, and a deaf centre. whilst focus group participants were recruited from two deaf churches and a deaf centre in accra, recruitment of survey respondents was conducted in a deaf high school and three deaf churches. these locations were selected in order to increase the likelihood of identifying deaf people who had formal education and knowledge of the gsl. the key informant was recruited from one of the srh centres. the informant had done a study on hiv and aids with the deaf community and so he was familiar with the deaf community. recruitment was done through announcements that included information sessions about the study and eligibility requirements. informed consent was obtained from all participants before recruitment. of the 152 respondents who completed the survey, nearly two-thirds were from the deaf senior high school. respondents from accra and tamale represented 28% – 11.2% of the survey sample, respectively. more survey participants were chosen from the senior high school than from accra and tamale because it is the only public deaf senior high school in ghana. the senior high school admits students from all over the country and has a diverse deaf population in terms of economic and socio-cultural characteristics. as such, their views were likely to be representative of the adolescent deaf population in ghana. the inclusion of adolescents was important since this age group has been found to have more srh problems than other segments of the population (national population council 1994). moreover, it was difficult recruiting deaf people with formal education from tamale because many of the educated had migrated to the southern part of ghana in search of jobs and better educational opportunities. this is a longstanding problem for ghanaians generally; the poor conditions in the north have triggered a general migration of people from the north to the south (berry 1995). efforts were made to ensure that females were equally represented since young girls have been found to be more at risk for srh problems than boys (national population council 1994). of the students recruited from the senior high school, 44 were females, although female students constituted only 93 of the 343 student population. in the study, respondents from accra and tamale (aged 22 years and above) are referred to as the ‘adult population’ and those from the deaf senior high school (aged 18–22 years) as ‘students’ or ‘adolescents’ in the balance of reporting. sampling strategy the sampling procedure used for selecting participants for this study was purposive, targeting only persons considered knowledgeable of issues affecting the deaf community. focus group participants were recruited from a deaf high school, three deaf churches, and a deaf centre. prospective focus group participants were contacted through text messages and emails. written scripts of the recruitment announcements were developed in english but were communicated to participants via the gsl at introductory meetings. after contacting prospective participants, arrangements were made to meet the males and the females at two different locations to discuss the focus group procedures, their remuneration, and issues concerning their privacy and confidentiality. ten out of the 12 contacted agreed to participate. of the 15 females contacted, 9 agreed to participate. seven of 10 gnad executives agreed to participate. after obtaining permission from the srh unit head, the key informant was recruited. recruitment of survey respondents was conducted through announcements that included information about the study, eligibility requirements, and an invitation to volunteers to go through screening and the informed consent process at present dates and times. on the screening day, those who qualified to participate were asked to sign the informed consent forms. in the deaf high school, verbal permission was sought from the head of the school before recruitment began, and a notice was sent to teachers and students about the study. the students were met during their lunch where additional details about the study and eligibility requirements were provided. reliability and validity of the data as indicated previously, the sampling procedure used for selecting participants was purposive. one of the decisions guiding the use of purposive sampling was to sample participants who had adequate knowledge on srh issues affecting the deaf community and whose views could best represent the views of the community. using these participants maximised the utility of the data by minimising input from respondents lacking any perspectives on the concerns of the community.data from the focus groups, key informant interviews, personal observations, and survey were compared and combined. triangulating data from multiple sources thus increased the validity of conclusions and often provided a more sophisticated interpretation of the data. for example, the focus groups facilitated in-depth exploration of the contextual nuances that clarified the survey data. as creswell and plano clark (2007) observed, triangulation in mixed methods, which involves obtaining different but complementary data on the same issue, makes it possible for researchers to get a better understanding of the issue being investigated. the main aim of triangulation is to bring together the differing strengths of quantitative and qualitative methods in order to overcome the weaknesses of each of these methods (creswell & plano clark 2007). data collection and analysis focus groups three focus groups were conducted: (1) the executives group consisting of seven executive members of gnad, all of whom were males, (2) the adult male group with 10 members, and (3) the adult female group with nine members. members were selected based on their knowledge of issues that affect the deaf community – they were considered opinion leaders in the deaf community. those selected included current executives of gnad, past executives of gnad, and people serving on committees in the deaf churches. the focus group guide consisted of open-ended questions and elicited information on participants’ views concerning access to srh services and information. issues discussed were: (1) sources of information, (2) knowledge of srh problems in the deaf community, (3) srh experiences and needs of deaf people, (4) ways to correct problems deaf people encounter when accessing information and services on srh issues, (5) key related issues in the deaf community, and (6) the role of gnad in the provision of information and services on srh issues. video and audio recordings were used to record proceedings from the focus groups with participants’ permission. whilst the men’s and the executives’ focus groups were conducted by a male research assistant, the females’ focus group was conducted by a female research assistant. the researcher assisted the research assistants when probes were needed for clarification or when the discussions went off-topic. the research assistants and researcher were all native signers and so all the focus groups were conducted in the gsl. the transcribed data from the three focus groups were analysed separately in order to differentiate the responses of the three categories of participants: leaders of the deaf community, male participants, and female participants. focus group videotapes were converted to dvds using adobe premiere video software. both the dvds and the voice recordings were transcribed to text format. the transcription of the data from the dvds was done in two steps: ‘partial’ transcription and full transcription. the first step (‘partial’ transcription) involved viewing the dvds from all the focus groups to identify and transcribe into word documents concerns that were raised by participants. this was an abridged version of the discussions, consisting of only the group discussion material needed for the development of the survey. since a verbatim transcription of the dvds would require significant time and delay the development of the survey, an abbreviated procedure was employed. the second step was a ‘full’ transcription of the videotapes. the full transcription represented the data from the focus groups that were used to complement survey results from the final survey sample. survey transcripts from the focus groups video and audio, two existing surveys – the 2003 ghana demographic and health survey (gdhs) and a survey on srh status amongst persons with disabilities in ghana – and two reports on adolescent reproductive health in ghana were used to develop the survey.the issues included in the survey were problematic areas drawn from the literature and additional concerns identified in the analysis of the focus group transcripts: experiences of deaf persons with srh providers, the role of gnad in the provision of srh information and services, and suggestions on how to improve access to information and services on srh issues. the final survey explored issues relating to factors that influence visits to srh centres, organisations providing srh services, srh problems amongst deaf people, sources of information on srh issues, level of knowledge on stds and pregnancy, contraception knowledge and use, and importance and satisfaction ratings of srh issues and services. based on advice from the gnad, all the survey interviews were conducted in groups with the exception of the tamale participants who were interviewed individually. each interview session involved gathering participants in a single room, distributing surveys, and providing instructions. research staff provided assistance and answered questions. some of the items were written on blackboards and flip charts. writing items on the blackboards and flip charts made it easier to explain items to all the respondents at the same time without having to go round to assist each respondent who needed help. the survey was conducted by the researcher and his two research assistants in the gsl. basic descriptive statistics were used to analyse and summarise the survey data. responses to the survey items were entered into an statistical product and service solutions (spss) data file, and cross tabulations and chi-square statistics were computed to compare response differences across age and gender groups. ethical issues the study was approved by the university of illinois at chicago’s (uic) institutional review board (irb). as stated previously, verbal permission was sought from the head of the deaf high school before recruitment. informed consent was obtained from all participants using the gsl. in the case of the focus groups, the men were met twice prior to initiating the focus group sessions. during the first meeting, it was agreed that the informed consent process and the focus group should not be held on the same day in order to allow more time for the informed consent process. forms were distributed to the participants to study at home; 10 of the 12 who attended the first meeting returned the forms to the second meeting. the meeting with the female focus group was scheduled separately in another church. as with the men’s group, the informed consent process was completed prior to beginning the focus groups. informed consent and the focus group were scheduled on the same day for the executives since they were dispersed across different cities and holding multiple meetings was logistically difficult. informed consent for survey participants was conducted in groups. forms were distributed to prospective participants at meetings in the deaf churches, deaf centres, and a classroom (in the case of the students) when the study was being announced. prospective volunteers interested in participating returned the forms on the date scheduled for the consent process and recruitment. the key informant was also given the consent form for review in advance of a second meeting during which he was taken through the consent process and the consent subsequently given. the informed consent process included giving information about the expected duration of the survey, how much they would be paid, and confirming that participation was completely voluntary and their decision not to participate would not adversely affect their relationship with the investigator. in addition, they were assured that they were not obliged to answer all questions, had the right to withdraw from the study at any time, and that their names would not be identified in the data. focus group volunteers were told that the groups involved video and audio taping; whilst the male group agreed to be videotaped, they thought they would feel more comfortable if the deaf community were responsible for the recordings. thus the researcher did the videotaping and the group chose a pastor working with the deaf church to narrate and audio record what they signed. similarly, the women agreed to have a deaf person do the videotaping. the executives group was videotaped as well and one of the participants did the audiotape recording. results top ↑ a unique feature of the study was the use of the results from qualitative methods to develop the quantitative (survey) instrument. issues that were raised during the focus groups and had some bearing on the provision of accessible srh information and services for the deaf community were used to develop the survey. additionally, issues that generated disagreements or differing perspectives and required the gathering of additional information were included in the survey. focus groups results participants discussed the level of knowledge and use of contraceptive methods amongst deaf people in ghana. their responses suggest that contraceptive knowledge and use amongst deaf people were low. some of the participants claimed that deaf people lack knowledge about risks and therefore engaged in risky sexual behaviours, suggesting that deaf people engaged in unprotected sexual activities, that is, do not use contraceptive methods. for example, some participants from the executives’ group were of the view that deaf people were largely unaware about the consequences of unsafe sex, which according to them, has resulted in many srh problems amongst deaf people. teenage pregnancy, gonorrhea, syphilis, miscarriage, abortion, and hiv or aids were some of common srh problems identified by the participants. this perspective on deaf people’s lack of knowledge was largely consistent with views from the women’s and men’s groups. a female participant (31 years), for instance, claimed that ’deaf people engaged in risky sexual behaviors which often resulted in unintended pregnancies’, a claim which was supported by another female participant (43 years) who claimed the problem was particularly high amongst adolescents and those who had no formal education. this pessimistic position reflected in the comments of the women was corroborated by some of the male participants. a male participant (45 years) indicated that deaf people were more likely to engage in risky srh behaviours because of lack of information on how to protect themselves. another male participant (29 years), described how deaf people’s ignorance about the consequences of unsafe sex has resulted in deaf people engaging in practices that led to many srh problems: ‘there are many diseases and reproductive problems in the deaf community because deaf people are ignorant about safe sex. for example, deaf people suffer from hiv/aids, gonorrhea, teenage pregnancies, abortion, and unwanted pregnancies because they engage in risky sexual behaviour. deaf people do not also have knowledge on the use of condoms as a safe measure against stis and stds. so some deaf behave in a way that can lead to health problems, for example, some still share blades and engage in unprotected sex.’ however, this negative perception about deaf people’s level of knowledge was not widely accepted by two male focus group participants. for example, one participant (56 years) commented that ‘many deaf people know how to take care of themselves’, whilst another (48 years) stated that ‘some deaf people have knowledge on the use of condoms as a safe measure against stis and stds’. the level of disagreement suggested the importance of collecting additional data via surveys on the level of knowledge and use of contraception amongst deaf people. survey results a summary of the level of knowledge of contraceptive methods amongst the survey respondents was drawn up (table 1). as indicated in the table, knowledge of modern contraceptive methods was not widespread amongst respondents; for example, respondents tended not to be familiar with modern methods of contraception other than condoms, pills, and injections. however, knowledge of traditional methods was high. table 1: percentage indicating knowledge of contraceptive methods by age and gender. adults tended to have higher levels of familiarity than students and there was a tendency for knowledge to be gender specific, with males generally more familiar with male-oriented contraceptive methods and females more familiar with methods relevant to females. however, none of the chi-square tests were significant across age and gender for each method. the current use of contraceptives as reported by respondents was also analysed (figure 1). as expected, contraceptive usage was generally low for all respondents. there were no statistically significant gender differences in contraceptive use but there was an age effect, with adults reporting more contraceptive use than students (46.7% versus 35.9%, x2 = 10.125, df = 2, p = 007). however, the age effect might simply reflect the large proportion of students who chose ‘not applicable’ (30.1% students versus 12.5% adults, not shown in the diagram). the low contraceptive usage amongst respondents seems to be consistent with perspectives by focus group participants that deaf people engaged in unprotected sex. figure 1: percentage sample of current use of contraceptives by age and gender. regarding the reasons for using any contraceptive methods, fear of contracting stds, including hiv or aids seems to be the major reason amongst both adults and students, as seen in the summary of respondents’ reason for using contraceptives across gender and age (table 2). table 2: percentage of sample citing reasons for using contraceptives by age and gender. there were no age or gender effects for fear of hiv or aids or stds as a reason for contraceptive use. although the tendency to rate fear of pregnancy was highest amongst adult females, there was no statistically significant gender difference in the ratings. age was a more important factor in ratings of fear of pregnancy, with students (11.1%) less likely to rate it as an important reason compared to adults (24.5%) (x2 = 10.125, df  = 2, p = 006). female students were the least concerned about pregnancy, contradicting findings on a study on adolescent reproductive health in ghana, which reported that the primary motivation for contraceptive use amongst adolescents was fear of pregnancy, not of stds (hessburg et al. 2007). it should be noted that the survey had no items that elicited information on whether respondents were married or in a sexual relationship at the time of the survey. contraceptive use is unnecessary if the respondent was not married or not sexually active. thus the low rate of contraceptives usage amongst respondents, particularly amongst the students, cannot be construed as lack of access to contraceptive methods, having a negative attitude towards contraceptive methods, or fear of embarrassment for reporting contraceptive use. discussion top ↑ this study explored deaf people’s level of knowledge and use of contraceptive methods and found that whilst deaf people’s level of knowledge and use of contraceptives was generally low, contraceptive knowledge appeared to depend on the type of contraception, age and sex. this finding is somewhat consistent with findings from poku’s (2008) general survey, which found that the level of contraceptive knowledge amongst people with disabilities in ghana was low. a comparison between findings of the current study and findings of the gdhs, a national survey to provide a broad understanding of the demographic characteristics and health status of the general population in ghana (ghana statistical service, ghana health service & icf macro 2009), indicated that contraceptive knowledge amongst deaf people was generally lower than that of the general population in ghana. however, care must be taken when comparing the results of the current study with other groups in order not to harm any of the groups involved. for example, the low level of knowledge of contraceptive methods amongst deaf people in the current study compared to the general population should be interpreted with caution because the two populations are not the same. deaf people’s low level of knowledge should not be stereotyped and attributed to their hearing loss; rather it should be seen as resulting from barriers they encounter. comparing the two populations in the same study may provide a better picture, but the gdhs and other national studies do not report statistics on the deaf population, so it is impossible to make such comparisons. pollard (1992) warned of the need to insure that when differences are observed in comparing deaf and hearing people, such differences should not lead to conclusions that will be derogatory or demeaning to either group. the finding that knowledge on condoms, withdrawal method, and pills was high amongst deaf people is consistent with findings from some previous studies amongst deaf people. for example, job (2004) found that the most commonly reported type of contraception amongst deaf adolescents were withdrawal, condoms, and oral contraception. the finding in the current study is also somewhat consistent with findings in the general population in ghana. findings from the gdhs indicated that the level of knowledge of condoms, injectables and pills was higher than other methods. these findings suggest some similarities between the deaf population and hearing population in terms of contraceptive behaviour. however, deaf people have unique characteristics that will present unique challenges in addressing their contraceptive needs. for example, communication barriers present serious difficulties for deaf people when obtaining information from the major sources of information such as health professionals, media, and reading materials. it should be noted that the level of knowledge of these methods is high probably because they seem to be the most popular methods and obtaining them can be done easily from any pharmacy and chemist shop without prescription. survey data in the present study indicated that the motivation to use contraception was fear of contracting stds, including hiv or aids, rather than pregnancy. the finding is consistent with the general reproductive behaviour of ghanaians (ghana statistical service, ghana health service & icf macro 2009). the gdhs reported that the main reasons for not using contraceptive methods amongst married women in ghana was fertility related: the desired to have more children or infecundity (ghana statistical service, ghana health service & icf macro 2009). this, however, contradicts a study on adolescents’ reproductive health in ghana which indicated that adolescents would use contraceptives for preventing pregnancies rather than for preventing hiv or aids (hessburg et al. 2007). there are no obvious reasons for these differences. it might be that participants in the current study perceived hiv or aids as a greater personal danger than pregnancy. hessburg et al. (2007) study indicated that participants thought they could identify a person with hiv or aids by physical symptoms. this perception may have influenced their decision on contraceptive use; they probably thought they could easily identify a person with hiv or aids from the person’s physical appearance and then make a decision about whether to use any preventive methods. these findings suggest there are differences in perceptions and attitudes between hearing and deaf people, and thus the need for group-specific intervention strategies. a unique feature of the study was the use of the results from qualitative methods to develop the quantitative (survey) instrument. integrating two data collection techniques (focus groups and a survey) from two divergent research traditions in a single study presented opportunities for tapping the strengths of the two approaches, and at the same time, compensating for their weaknesses. it also presented some challenges. first, the focus groups facilitated the development of the survey instrument – it assisted in formulating survey questions. second, combining the two data collection techniques provided a better understanding of the topic under investigation and helped to overcome the complex data collection and interpretation challenges inherent in srh research. analysing deaf people’s level of knowledge and use of contraceptives from differing methodological perspectives provided better and deeper insights into the subject. third, the use of the two methods strengthened the validity of the findings; the fact that the findings of the focus groups and survey point to the same conclusion suggest that the findings are, to a large extent, valid. notwithstanding these benefits, integrating qualitative and quantitative methods has serious limitations, notably comparability of the results from the two research methods. the focus group data are necessarily interpretative and typically dependent on the context in which the actions take place and thus are not amenable to quantification which is the basis of quantitative (survey) data. this presented a methodological difficulty in reaching a common conclusion without some simplifications. policy and programmatic implications top ↑ the findings of the study have important implications for policy making and programme designing. deaf people have unique communication needs which are often ignored in srh policy making, programme designing, and service delivery. the neglect of these needs has created barriers and hindered accessibility to srh information and services to the deaf community. for example, most educational campaigns on srh issues in ghana are conducted primarily through the mass media and educational materials such as posters and brochures (awusabo-asare et al. 2006; ghana statistical service, ghana health service & icf macro 2009). there are, however, important limitations to media-based dissemination to the deaf community because television broadcasts are not captioned or translated in the gsl. more limiting is the fact that these programmes reach few people since many in the deaf community do not possess television sets. the print media and internet are likewise less accessible to the deaf because of their costs and the limited english reading skills in the population. this lack of accessible information is compounded by the high illiteracy rate in the deaf community which prevents access to commonly used print materials such as newspapers, magazines, leaflets, brochures, posters and billboards. thus any successful srh programme for the deaf community must address their communication concerns. possible solutions could include having the ghana national association of the deaf (gnad) appeal to all television stations to adapt their programmes with sign language interpretation or by providing subtitles. secondly, all srh education outreach programmes for the deaf community should be undertaken in collaboration with gnad so that gnad could provide technical assistance and help with the provision of sign language interpreters. finally, whilst the survey found that knowledge of some contraceptive methods such as pills, injectables and condoms was generally high, awareness of many other methods was not widespread. in particular, understanding of emergency contraceptives should be improved because it is an important method following unprotected sex (awusabo-asare et al. 2006). also, since the motivation to use contraceptive methods appears to come from fear of contracting hiv or aids rather than pregnancy, investing in hiv or aids campaigns can have indirect but far reaching effects on the reduction of unintended pregnancies. conclusion top ↑ the study findings highlighted key issues relating to deaf people’s level of knowledge and use of contraceptive methods, which are relevant for the design of deaf friendly policies and programmes. the study findings suggest that serious challenges lie ahead in the provision of deaf-friendly srh information and services for the deaf community in ghana. this demands clear and effective policies to guide the provision of information and services. moreover, to the extent that cultural considerations are fundamental to srh planning, the matter of deaf culture and its influence on the behaviour of deaf people must be considered. in other words, further research is needed to understand the relative importance of deaf people’s cultural identity and communication barriers for their vulnerability to srh problems. acknowledgements top ↑ i would like to thank the national association of the deaf, and the entire deaf community in ghana and individuals, who in diverse ways, contributed to the success of this project. the financial assistance from the international fellowships programme and the department of disability human development, university of illinois at chicago, contributed significantly to the completion of this project. my sincere thanks also go to my doctoral committee. competing interests the author declares that he has no financial or personal relationship(s) that may have inappropriately influenced him in writing this article. references top ↑ awusabo-asare, k., biddlecom, a., kumi-kyereme, k. & patterson, k., 2006, ‘adolescent sexual and reproductive health in ghana: results from the 2004 national survey of adolescents,’ occasional report 22, viewed 09 september 2008, from http://www.guttmacher.org/pubs/2006/06/08/or22.pdf biney, a.a.e., 2011, ‘exploring contraceptive knowledge and use among women experiencing induced abortion in the greater accra region, ghana’, viewed 24 may 2013, from http://www.ug.edu.gh/rips/pub/research_article_by_adriana_ae_biney.pdf berry, l.b., 1995, ghana, a country study, us government printing office, washington. burch, s., 2004, signs of resistance: american deaf cultural history, 1900 to world war ii, new york university press, new york. corker, m., 1998, deaf and disabled or deafness and disabled?, open 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clark, h.w. & binka, f., 1999, ‘changing nature of adolescence behavior in the kassena-nankana district of ghana’, studies in family planning 30(2), 95–111. http://dx.doi.org/10.1111/j.1728-4465.1999.00095.x, pmid:16617544 ministry of employment and social welfare, 2000, ghana national disability policy document, delaram, accra, ghana. national population council, 1994, ‘national population policy’, ghana national population council, accra, ghana. narzary, p.k., 2009, ‘knowledge and use of contraception among currently married, adolescent women in india’, studies on home community science 3(1), 43–49, viewed 29 may 2013, from http://www.krepublishers.com/02-journals/s-hcs/hcs-03-0-000-09-web/hcs-03-1-000-09-abst-pdf/hcs-03-1-043-09-067-narzary-p-k/hcs-03-1-043-09-067-narzary-p-k-tt.pdf padden, c. & humphries, t., 2005, inside deaf culture, harvard university press, cambridge. pmcid:pmc548320 poku, k.a., 2008, ‘sexual and reproductive health status and hiv/aids and sti-related 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‘deaf culture: the case of cochlear implants’, the journal of political philosophy 13(2), 135–152, viewed 12 june 2009, from http://www.neiu.edu/~gmoreno1/special_education_courses_with_dr._moreno/module_nine_files/activitysix.pdf tucker, p.b., 1998, ‘deaf culture, cochlear implants, and elective disability’, the hastings center report 28(4), 6–14, viewed 14 march 2009, from http://findarticles.com/p/articles/mi_go2103/is_n4_v28/ai_n28711241 wilson, a. & monaghan, l., 2006, ‘hiv/aids and the deaf community’, international journal of deaf studies 22(1), 1–10. world health organization, 2009, ‘promoting sexual and reproductive health for persons with disabilities: who/unfpa guidance note’, viewed 19 june 2010, from http://www.unfpa.org/webdav/site/global/shared/documents/publications/2009/srh_for_disabilities.pdf abstract introduction research method and design results discussion conclusions acknowledgements references appendix 1 footnotes about the author(s) karlien spangenberg children with severe and profound intellectual disabilities inclusive education outreach team, western cape department of education, south africa lieselotte corten department of health and rehabilitation sciences, university of cape town, south africa winnie van rensburg children with severe and profound intellectual disabilities inclusive education outreach team, western cape department of education, south africa elizma kilian children with severe and profound intellectual disabilities inclusive education outreach team, western cape department of education, south africa judith mckenzie department of health and rehabilitation sciences, university of cape town, south africa hein vorster children with severe and profound intellectual disabilities inclusive education outreach team, western cape department of education, south africa jennifer jelsma department of health and rehabilitation sciences, university of cape town, south africa citation spangenberg, k., corten, l., van rensburg, w., kilian, e., mckenzie, j., vorster, h., et al., 2016, ‘the validation of an educational database for children with profound intellectual disabilities’, african journal of disability 5(1), a237. http://dx.doi.org/10.4102/ajod.v5i1.237 original research the validation of an educational database for children with profound intellectual disabilities karlien spangenberg, lieselotte corten, winnie van rensburg, elizma kilian, judith mckenzie, hein vorster, jennifer jelsma received: 27 oct. 2015; accepted: 13 july 2016; published: 23 sept. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the western cape forum for intellectual disability took the south african government to court in 2010 on its failure to implement the right to education for children with severe and profound intellectual disability. subsequently, multidisciplinary teams were appointed by the western cape education department to deliver services to the special care centres (sccs). initially, minimal information was available on this population. objectives: the purpose is to document the process of developing and validating a database for the collection of routine data. method: a descriptive analytical study design was used. a sample of convenience was drawn from individuals under the age of 18 years, enrolled in sccs in the western cape. the team who entered and analysed the data reached consensus regarding the utility and feasibility of each item. results: data were collected on 134 children. the omission of certain items from the database was identified. some information was not reliable or readily available. of the instruments identified to assess function, the classification systems were found to be reliable and useful, as were the performance scales. the weefim, on the other hand, was lengthy and expensive, and was therefore discarded. discussion and conclusions: a list of items to be included was identified. apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed. introduction the second united nations (un) millennium development goals included the achievement of universal primary education (un) by 2015, which encompasses children with disabilities. yet for millions of children with physical and intellectual disability this goal may not be close to realisation, despite various un declarations affirming their rights to education. children with more severe and profound disabilities have been especially disadvantaged. within the western cape (wc), there are estimated to be approximately 3000 children with severe or profound intellectual disability (cspid) (kleintjies et al. 2006; mckenzie, mcconkey & adnams 2013a). in this study, kleintjies et al. defines profound intellectual disability as having iq levels below 30. the dsm-5 (american psychiatric association 2013) stipulates the following specifiers in terms of the severity of intellectual disability: the various levels of severity are defined on the basis of adaptive functioning, and not iq scores, because it is adaptive functioning that determines the level of supports required. moreover, iq measures are less valid in the lower end of the iq range. therefore, this population of children has both intellectual and adaptive functioning deficits in the domains of conceptual, social and practical domains. in the practical domain (american psychiatric association 2013), it means that: the individual requires support for all activities of daily living, including meals, dressing, bathing, and elimination. the individual requires supervision at all times. the individual cannot make responsible decisions regarding well-being of self or others. the prevalence of sensory impairments, visual and hearing, in people with intellectual disabilities is 10 and 40–100 times greater than in the general population (carvill 2001). prior to the court action described below, there was little recognition that these children had the right to educational services provided by the national department of basic education, a situation similar to most african countries (mckenzie, mcconkey & adnams 2013b). the western cape forum for intellectual disability, on behalf of its members, took the south african government to court on the matter of the rights of cspid in the wc in 2007 (south african legal information institute 2007). the application was successful, and the judgement required the western cape education department (wced) to take incremental steps to ensure that such children have affordable access to a basic education of an adequate quality and to report back on the progress made in implementing the judgement. implementation entailed supporting organisations and centres that provide education and care to cspid.1 as a consequence, four multidisciplinary educational teams were appointed to work with cspid in special care centres (sccs) in the wc. each team consists of a psychologist, a learning support educator, an occupational therapist, a physiotherapist, and a speech and language therapist. the teams supported approximately 35 sccs in six of the eight education districts in the wc by march 2013.2 this amounts to about 1050 children and about 120 care staff at the sccs. the four cspid teams have adopted a phased approach to the roll out of educational inclusion in the sccs, beginning with relationship building with the centre staff, identifying the children, consulting with parents, formalising the content and scope for programme development and teaching care staff to provide educational stimulation to the children. goals are set and prioritised for each child. centre caregiver training is done on site, and this is practical and interactive in nature. the various team members are consulted by a representative involved in developing a national curriculum for profound intellectual disability (pid), which links with the national curriculum framework for children birth to four years and the curriculum for severe intellectual disability, under development. at the commencement of the programme, there was very little information available with regard to the demographics, educational accomplishments or functional limitations of the children enrolled in the programme. as a result, there was no baseline information from which to map the progress of the children and little evidence to monitor the efficacy of the programmes. literature review on similar projects around the globe did not render satisfactory results. apparent inconsistencies in the definitions of disability hamper international comparison (robson & evans 2003), especially true in special education, in which different systems lead to even more controversy (robson & evans 2003). every typically developing child has their educational progress monitored by the national department of education, through the central education management information system (cemis). there was thus a need to develop a database appropriate for the needs of cspid. this database should form part of systems for assessing and monitoring changes in children’s physical, social, communication and cognitive competences as well as their health, personal care and emotional well-being. children attending these sccs are only the tip of the iceberg of cspid, as many children are still excluded from any form of education. however, due to the brief and logistical constraints of the multifunctional teams, this study could not include these children. aim of the study the purpose of this paper is to document the process of developing and validating a database for the collection of routine data for cspid. this could potentially form part of cemis and be administered centrally. it is hoped that the documentation of this process will assist other organisations wishing to develop similar databases. research method and design an iterative process, including group discussions, training sessions and online discussion, was utilised to reach consensus on suitable items for the database. a descriptive analytical study design was used to pilot the prototype database. participants the participants included eight to ten members. to objectify the development of the database, the representatives of the four cspid teams were joined by representatives from within the department of health and rehabilitation sciences of the university of cape town. the participants represented the disciplines of psychology, teaching, occupational therapy, speech and language therapy, and physiotherapy. information gained through the initial audit of the sccs and the subsequent findings of the original team were considered in this process.¹ the data collection form was rolled out to 12 centres in 3 of the rural districts by september 2014 to assess all children in these centres, as part of their routine management. the sample for the validation study was drawn from all individuals under the age of 18 years, who were enrolled in 10 of the 12 centres serviced by the rural team, as indicated on registers for september 2014. the exclusion of two of these centres was due to logistical constraints in service delivery at that time. as the purpose was to explore the feasibility and usefulness of the data collection form, the sample was one of convenience and not necessarily representative of all 273 individuals serviced by the rural team by september 2014. the results were then presented to the members of the small task team who reached consensus with regard to which items should be included in the definitive database. instrumentation the database items were identified through a series of consensus meetings. the multidisciplinary nature of the team contributed to the face validity of the instrument. there was considerable discussion as to which demographic and health condition items should be included, as well as items relating to medical management, provision of assistive devices and therapeutic interventions. all members were requested to identify standardised instruments that were valid and responsive for the measurement of the different aspects of functioning of each child. the criteria for inclusion were that the instrument should be able to be used by any member of the team, that it should be robust and that it would monitor important functional and educational skills in the target population. the standardised instruments considered included, amongst others, the gross motor function measure (mcdowell 2008), the alberta infant motor scale (piper et al. 1992), the bayley scales of infant development (milne, mcdonald, comino 2012), the vineland social emotional early childhood scale (van duijn et al. 2009) and the receptive one word vocab test (tafiadis et al. 2010). however, it was agreed that each of these tests required specialised, discipline specific skills to be used routinely by any member of the team. the instruments that were ultimately chosen included different classification systems: the gross motor function classification system (gmfcs) (mcdowell 2008), the manual ability classification system (macs) (eliasson et al. 2006) and the communication function classification system (cfcs) (hidecker et al. 2011). these were included to give a gross measurement of the level of functioning of the children and a summary can be found in tables 1–3. table 1: gross motor function classification system. table 2: manual ability function classification system. table 3: communication function classification system. in addition, the weefim (ottenbacher et al. 2000), which gathers data on self-care, mobility and cognition, was included to monitor the independent functioning of the children. the performance scales (p-scales), which are the national curriculum performance attainment targets for children with special education needs in the uk, were also included (department for education 2014). the attainment scales are differentiated performance criteria and give an idea of the child’s level of participation to structured activities throughout the day, hence measuring educational-oriented achievement. the p-scales use eight performance levels to illustrate learning. levels p1 to p3 show the earliest levels of general attainment. levels p4 to p8 show subject-related attainment, focusing on extending understanding and connecting knowledge. the extracts from the p-scale level descriptions 2009 in table 4 will assist in understanding the value and relevance of this tool (qualifications and curriculum authority 2009). table 4: extracts from p-scale level descriptors – english. in addition, the existing data collection forms, which included information related to demographic, medical and need for and availability of assistive devices, were expanded to include additional information. it is to be noted that the functional items are to be reassessed at regular intervals to monitor change in status. however, the repeated measurements were not tested as part of this pilot. procedure the process was started in november 2013 with the support of the wced. collaboration between members of the cspid team and the university of cape town was initiated. permission was obtained from the human research ethics committee of the university of cape town (hrec ref: 109/2016). the entire group met and agreed in principle that a database should be developed. approximately eight meetings were held in the course of the next 12 months including two training sessions on the use of the weefim and the p-scales. a smaller task team was then established to continue this work. an initial list of items was circulated to the larger group, and based on the responses a prototype database was developed and registered with the hrec of the university of cape town. the prototype was subjected to a feasibility study with 20 participants. based on these results, further amendments were made, including the use of drop-down boxes to ensure standardisation of responses under each item. all participating children had been admitted to the programme prior to the introduction of the database. they had an existing questionnaire, filled in for each child at the specific centre, with relevant data. additional information was then added to their records. based on information previously gathered at admission, as well as after the administration of the standardised instruments, a research assistant then collected all this data from the cspid files, using a survey instrument application, magpi (http://home.magpi.com/). since the inception of the database, consent for including the information of the children enrolled in the cspid programme and for auditing of procedures has been added to the admission forms. informed consent was obtained from the parents of all enrolled children. confidentiality was ensured by removing the names of the children and their centres from the data set prior to analysis. data analysis descriptive statistics were used throughout. the three therapists who had utilised the database discussed the statistical outcomes and the value of the information gained from each item until consensus was reached as to the utility and feasibility of each of these headings. results of the 134 children recruited, 58% were male. three quarters of the children spoke afrikaans, and with three exceptions the others spoke isixhosa. names, surnames and date of birth were 100% available at the time of the study and only one centre did not record home addresses. the mean age was 9.1 years (standard deviation [sd] = 3.2 years, range 2.7–17.6 years; see figure 1). table 5 shows the categories, in terms of grants received, found in the folders. the receipt of grants was unrecorded in 96 of the cases. other items, such as hospital folder numbers, parental income or socio-economic status were not found to be widely available. table 5: results on item – grants. figure 1: histogram of the ages of the children (n = 134). data on meeting the need in terms of transport were easily accessible. all children had access to transport arranged or supplied by the scc. where the diagnosis was available, it was entered into the database as written in the folder with cerebral palsy (cp), idiopathic intellectual disability and epilepsy being the most common. it was necessary to recode certain diagnoses (table 6) for the sake of standardisation; for example, hemiplegia, spastic cp and athetoid were recoded as cp. the results of the items related to the availability of appliances are given in table 7. only three children were identified as being in need of an appliance. table 6: results on item – health conditions. table 7: results on item – availability of appliances. the classification systems were applied only to those children who had been diagnosed with cp (figure 2), a sample of 63. peaks were observed at mild levels (levels i and ii) and unable to do (level v) for the macs and gmfcs. in contrast, a steadily increasing percentage of children had problems with communication, with two thirds falling in the most severe category. similar peaks were observed with the scores on the p-scales, with peaks at p1.ii and p4 and p5 (figure 3, presentation of p-scale scores of 122 children) figure 2: number of children (y-axis) scoring at the different macs, gmfcs and cfcs levels (x-axis). figure 3: frequency (y-axis) of p-scale scores (x-axis) across all subject areas. the weefim was administered to 27 children, with the results of the self-care domain recorded in table 8, as an example of the results obtained. because of the administrative burden, a small sample of convenience was used. table 8: weefim – self-care domain. due to logistical constraints, not all of the 134 children were tested using all of the instruments, resulting in the missing data reported in figures 2 and 3. the three therapists involved discussed the feasibility of each item and reached consensus regarding the utility, feasibility and possibility of standardisation thereof, to ensure future reliability. based on the results of the pilot testing, several items were altered. items deemed not to meet the criteria of these three constructs were deleted or amended. their conclusions and suggested amendments are listed below. the child’s home language was indicated in the centre folder. apart from afrikaans and xhosa as preferred language, the minor exceptions were french, tsonga or sotho. the use of the national identification (id) number rather than a yet-to-be-allocated cemis number is preferred. a unique number is necessary to ensure confidentiality, and it had been thought that a cemis number would be the most appropriate. identity documentation is available in the majority of centres and accompanied by birth certificates, in most cases. initially, it was thought that hospital numbers could assist with health-related queries. it became apparent that id numbers would best serve as the reference number in the attempt to align databases from different government departments as well. id numbers should be utilised as the unique identifying number, which could also be used for children not attending sccs. information with regard to the age of children is extremely important and was available for all. the results identified the need for early intervention and raises questions as to why there was a sudden drop in attendance after the age of 10 years. another useful finding was that there are several older children who are still attending the centres. age-related information will be useful both in terms of practical planning of age-appropriate programmes and interventions, as well as for monitoring and planning of future service delivery. it was agreed that the collection of socio-economic data was difficult to source and unreliable. it was decided to replace employment status with family structure. similarly, hospital payment scale, which did not render the desired information, was replaced with income category. the screening identification assessment and support (sias) document (department of basic education 2014) acknowledges the essential role of parents in the education and the development of an individual support plan for their child. after data collection, it became apparent that the term disability grant was used incorrectly, as it applies to adults. it was decided to specify the options as follow: child support, care dependency, foster care or combined foster and care dependency grants. although there were many missing entries, the team agreed that this was important information which should be gathered in future, as this indicates whether a child receives the appropriate support from the state or not. should the latter be found, the parent can be guided to the relevant authorities. the health conditions were available in the folders, but the coding was unstandardised. intellectual disability was only indicated on a number of folders, mainly those with no other condition. these children with no other diagnosis indicated in their folders are represented in table 3 as intellectual disability. the team therefore suggested that the international classification of disease (world health organization 2008) codes be utilised for the primary diagnosis. this diagnosis informs the medical, nursing and therapeutic interventions that might be required. in some cases, there was no clear diagnosis recorded, and the team suggested that there be a second health condition code titled ‘probable health condition’ which would be based on the clinical symptoms and the judgement of the team members. it is suggested that the third health condition code be related to the aetiology of the condition and that the global burden of disease categories should be utilised. it was agreed that although it might be difficult to gather accurate information, it was important to include the health condition as to inform prevention of conditions, progression of the conditions and management. the coding of the medication was also problematic (although not reported on above) as in some cases, it was coded under generic names, others under brand names and sometimes in terms of the indication for the medication. the final suggestion was that besides coding the name of the medication, the type of medication should be indicated. it was agreed that information relating to chronic medication should be gathered, as it would give an indication of the need for possible nursing support to the sccs. with regard to appliances, there was inconsistency between the number of children reported to have spectacles and hearing aids and the number of children reported to have visual or hearing impairments. this highlighted the need for screening of sensory impairments before judging the need of these assistive devices. the absence of an item related to alternative, augmented communication was also noted, and this was added to the list of assistive devices. the intervention that the child receives from sources other than cspid should be entered under the headings medical, therapeutic and other stimulation activities, instead of simply medical intervention. the classification systems, as standardised measures of gross motor, manual and communication ability, has a low administrative burden, is robust and can be used across disciplines. the functional abilities of the children have implications on how they can participate in stimulation activities. activities need to be adjusted, to accommodate for these functional limitations. the classification systems, thus aid in the easy identification of the children in need of therapeutic intervention to optimise their participation to classroom activities. rather than using all the p-scales, it was suggested that the most useful ‘subject areas’ be identified, renamed and implemented. ‘english’ were substituted with language – speaking and listening – to cover all other official languages used in the sccs. the home language of the child will thus be targeted, and not one specific, preselected language. ‘using and applying mathematics’ was chosen. these two represented priority areas and physical education was added to represent an additional skill, according to subject areas outlined in the uk guidelines (qualifications and curriculum authority 2001). these three were chosen, as they correlate to the domains of motor development, cognitive development as well as communication and language development. these were the areas stipulated in the draft framework for therapeutic and stimulation programme: children with severe to profound intellectual disability (cspid) developed by the provincial cspid team of wced in november 2012.3 personal and social health education (pshe) and citizenship (p-scales), representing social-emotional skills, formed part of the initial subject areas under investigation, but due to logistical reasons, not implemented to the same extent, and thus not incorporated into the data set. for feasibility of execution in the field, it was unrealistic to incorporate more subject areas. these items appeared to be sufficient to plan basic educational activities and monitor progress at this stage. the weefim was found to be too time consuming for routine collection and excluded from the final database, although it could be useful at an individual level. the final version of the database is presented in the appendix 1. discussion this paper has documented the development and pilot testing of a database of routinely collected data for cspid and explored the utility of this data. based on the results of the pilot testing, several items in the prototype database were altered. there were several lessons learned from the pilot and, as most of the information was relatively easy to access, the therapists expressed confidence in the results. however, where items, such as hospital folder numbers, parental income or socio-economic status, were not found to be available, the utility of having such an item was questioned. it was brought to the attention of the authors that access to data of the western cape department of health can be gained by the use of identity numbers or name and surname with date of birth. referrals are made to local clinics or district-based rehabilitation services. hospital numbers are thus not essential and in effect redundant. during the course of data collection, it came to the attention that a rare few children had access to private medical care. this elicited a debate about whether it can be assumed that all children in this population had similar socio-economic circumstances or whether this should form part of routine data collection. the learner profile as described in the sias document (department of basic education 2014) only includes information on family structure and type of social grant. it is therefore suggested to suffice with these two items, in line with sias documentation, as part of routine data collection for cspid at this stage. higgs, nt (higgs 2007) states that ‘self-reported income data in south africa is notoriously unreliable’. the inclusion of income category should therefore be reconsidered. in the support needs assessment part of the sias document (department of basic education 2014) the following other factors are mentioned as possible barriers to learning, namely: number of schools attended, refugee/immigrant status, substance abuse, domestic violence, divorce, neglect, disabled or ill parents and poverty stricken background. models, like the american association on intellectual and development disabilities conceptual framework for human functioning (buntinx & schalock 2010), propose an outline to integrate activities from different disciplines involved in service delivery to people with intellectual disability. context forms a crucial part of measuring human functioning, as proposed by buntinx and schalock. it is advised by the authors that role players draw from items suggested by higgs (2007) and berry et al. (2013). part three of south african child gauge 2013 also outlines vital pointers on the socio-economic rights of children, which are a subset selected from the website www.childrencount.ci.org.za. as the above mentioned factors have a high prevalence in people with intellectual disabilities (adnams 2010), future inclusion of these items might have to be considered by the relevant authorities. for other items, such as health condition and medication, the information was generally available although challenges remain. by default, all of the children admitted to a scc are because of intellectual disability and it should therefore be excluded from the list of conditions. it was also considered necessary to provide more details regarding the interventions that the children received. it became clear on analysis that such a database will collect much useful information that can inform the nature, content and extent of service delivery to cspid and monitor the impact of such service. for instance, the pilot revealed that there were very few children under the age of 4 years attending the centres. the percentage reflected in this study is lower than the 25% of cdg beneficiaries between 0–6 years of age, found to be attending early learning facilities in the local community (department of social development, dwcpd & unicef 2012). this raises the question as to whether young cspid are receiving early intervention, and if so, to what extent and of what nature? it is beyond the scope of this paper to really contemplate the reason for the sudden drop in numbers at the age of 10. however, appropriate school placement (department of social development et al. 2012) and severe behavioural challenges (carvill 2001) come to mind, but there will surely be other factors to consider. the number of older children who will be leaving the centres speaks to the need to have appropriate care centres for young adults, as well as improving the education of both younger children and adolescents. as so many children presented with health conditions, which would influence physical functioning and/or require medication, it is clear that a multidisciplinary team, including educationalists and allied health professionals such as therapists, is essential. the small numbers of children still in need of physical assistive devices indicates that delivery of appliances, such as wheelchairs and buggies, has been appropriate and successful. on the other hand, very few children with sensory impairments received aids such as spectacles, hearing aids and communication devices. this highlights the need for adequate screening of sensory impairments. given the high prevalence of sensory impairments (department of social development et al. 2012) and the resultant impact on learning, this should be prioritised. the language used by staff members in the centres did not get reflected in the original data set. the language of learning and teaching is important in terms of planning service delivery. the data on home language might appear to be in contrast to the figures for the whole of the wc, but is the reality for the rural parts of the province, which were included in the study. only one of the centres used xhosa as the language of instruction, one centre used both afrikaans and english and the others instructed mainly in afrikaans. as the focus of the team is on communication and not teaching a specific language, using the home language of the child is encouraged as far as possible. availability of transport is of utmost importance. most children cannot afford personal or public transport, which would result in non-attendance or a high degree of absenteeism. unfortunately, this database underestimates the need for transport as it does not reflect the number of children not gaining access to the scc because they reside outside the area covered by centre transport. the need in terms of transport, in reality, is thus bigger than reflected in these statistics. for many children the reason for not attending a scc is probably or partly due to inaccessibility of transport. the need is to expand the use of the data set for children on a waiting list at that particular centre. in doing so, it will be a start to account for children whose rights have not been met. it is beyond the logistical constraints of the multifunctional teams to venture further out into the community. in the metro areas, a non-profitable organisation (npo) is employed by the department of social development to develop home programs for children with no access to scc’s or schools. in the rural areas, due to the vast distances involved, the authors are of the opinion that if would be more feasible to strengthen the means of the rural cspid team, with the brief to support out of centre children as well. the need for therapeutic expertise, across the disciplines, is indicated by the large numbers of children with cp, classified at the most severe levels of the macs, gmfcs and the cfcs. although initially developed specifically for use in cp (bodkin, robinson & perales 2003), there is a need to utilise these systems with children with other diagnoses apart from cp. although the items appear to be sufficiently generic to apply to children with other diagnoses, the validity of this use will need to be established. the gross motor function classification system (gmfcs), although robust and suitable to describe how severe the child with cp is affected, it was not developed with the purpose of measuring difference over time or subsequent to intervention (adams 2009). the same is true for the other classification systems. each discipline will thus have to further investigate appropriate outcome measures within their respective scope of service delivery. this is a fragmentary approach, probable only possible to administer on a carefully selected few. although the vineland screener 0-12 years research version (van duijn et al. 2009) was discarded as a measurement for routine use, it is suggested that vineland adaptive behavior scales (2nd ed.) (sparrow, cicchetti & balla 2005) be reconsidered. it is standardised and has a more holistic approach which includes most of the domains applicable to cspid. the vineland adaptive behavior scales (2nd ed.) (sparrow, cicchetti & balla 2005) assesses adaptive behaviour, which determines severity and consequently the level of support required (american psychiatric association 2013). the dsm-5 defines the conceptual domain for pid as the following: conceptual skills generally involve the physical world rather than symbolic processes. the individual may use objects in goal-directed fashion for self-care, work, and recreation. certain visuospatial skills, such as matching and sorting based on physical characteristics, may be acquired. however, co-occurring motor and sensory impairments may prevent functional use of objects. the p-scales were found to be very useful not only as a measure of outcome but also to assist in planning the educational support and developing appropriate activities and can also support the implementation of a curriculum. it serves as a common tool shared by educators and health-care professionals. it became clear that this was the assessment tool of choice with which to measure educational progress, particularly as elements thereof will probably be integrated into the new national curriculum for children with intellectual impairments still being developed, by a task team for the national department of education.4 it is a low-cost high-relevance tool which can be implemented in the interim alongside the south african national curriculum framework (ncf) for children 0–4 years (department of basic education 2014). the content of this curriculum addresses the cognition of children 0–4 years and can partly address the learning needs of cspids of all ages. p-scales as an assessment tool can be implemented from the age of 5 years. yet the principles of exposure to stimulation, coactive exploration and supported participation can be applied to all, irrespective of age. to align with the subject areas outlined in the ncf, the terms communication and exploring mathematics are suggested until the final pid curriculum becomes available. it is imperative that the subject of pshe and citizenship become part of the base line data set. it is advised that thought should be given to the eventual inclusion of music as well as art and design as subject areas, addressing the priority area of sensory awareness and perception (qualifications and curriculum authority 2001). given the contextual constraints and the fact that the project is still being developed, the authors are of the opinion that the current inclusion of more subject areas is not currently advisable. the distribution of peaks, which indicates a substantial number of children are performing at a relatively high level, may be useful in identifying children who may be performing at higher levels and are thus inappropriately placed in centres for cspid. at an individual level, the results of the p-scales can be utilised to target specific areas of weakness. as case discussions with parents and care staff are part of routine work for cspid, it will be possible to integrate p-scales into this process. these guidelines thus give all those involved in the educational stimulation of the child a ‘small steps framework’ (mittler 2002) that responds to the diverse educational needs of cspid. it is a very practical guide to appropriately address learning challenges, which respond to diverse need in learning, facilitate inclusion and display ways to overcome barriers to learning. regular, routine p-scale assessments will enable charting of the learners’ progress. this information is useful to monitor progress over time, assess the effectiveness of intervention and to identify where further support is needed. at a policy level, an analysis of the differential performance on the different scales can inform curriculum development and lead to a greater understanding of the inter-relationship of the different skill categories (qualifications and curriculum authority 2001). in addition, those centres or intervention programmes that are associated with the greatest improvement in the learners’ functioning should be identified and should be emulated. the authors recommend that the p-scale results to be administered by cemis, just as the examination results of mainstream school children are retained and coordinated. in this way, each child will become visible to the relevant authorities. however, the appropriate use of the scales requires training to ensure standardisation of assessment across children, team members and centres. this training should be incorporated into capacity building and professional development of cspid team members. the use of the weefim is not recommended for the general routine assessment of cspid. although the weefim is a standardised assessment tool, it includes the term of maximal independence. children with profound disability will always be dependent in many areas of self-care and other activities of daily life. with the exclusion of the weefim due to cost and time implications, the database had a gap in the important area of self-care assessment. the authors identified the need to develop or identify an appropriate self-care classification system for children comparative to the other classification systems. this is a matter of urgency, as developing self-care skills is an essential component in educating cspid. it is advisable that this tool be developed within the contemporary framework of a support model (buntinx & schalock 2010) which takes into account not only the child’s abilities but contextual specific elements. the development of the database was supported by grant funding, and the collection and entry of the data onto a mobile tablet were done by a research assistant, supported by the grant. the analysis and reporting were done in collaboration with academic partners at the university of cape town. the process was enriching for both parties and demonstrated the value of academic and public partnerships. however, this model is not sustainable and there is a need to institutionalise the collection, storage, analysis and dissemination of reports and monitoring of the results. this would, in the light of the ruling of the high court, appear to be a responsibility of the education authorities who have the capacity and structure within cemis to perform these functions. hopefully, this initiative of the cspid team in identifying and piloting a viable database will inform the future integration of information relating to cspid into the system that collects and manages equivalent data for all children attending schools. this will go some way in ensuring that the educational and other needs of learners who have severe and profound cognitive impairments are adequately addressed, especially those that have not been enrolled in centres or accommodated in schools. in time, after implementation in the field, the resultant core data set has the potential to form a reference to other countries in southern africa, possibly even to more lowto middle-income countries. conclusions it is clear that the development of this database represents the first steps on a long road. in the near future, the use of the database can be rolled out in all the cspid districts, and repeated assessments of functioning at regular intervals can start. there is no doubt that the database will undergo many amendments as deficiencies and redundancies are identified with use. however, it is likely that a core set of information will be collected and over time, an overall picture of the needs and capabilities of cspid will emerge. this information will be useful for service planning and monitoring. at an individual level, regular assessment of the performance levels of the children will give parents, therapists and care workers useful information not only with regard to current performance, strengths and challenges but also in terms of the development and emerging needs of the children. the authors maintain that if a system of data collection is instated by the educational authorities, these most vulnerable of children will become visible and their right to education, as endorsed by the court ruling, will be adequately addressed. acknowledgements thanks are extended to all members of the wced cspid team who participated in this process. your dedication and commitment to the children in your care is commendable. the collaboration of parents, children and caregivers in the pilot study is also recognised. funding from the chec/wcg joint funding is gratefully acknowledged. the contribution of professor roy mcconkey to the conceptualisation of the database is gratefully acknowledged. competing interests several of the authors are employed by the wced and thus have an interest in the introduction of an appropriate database for collecting educational information on children with severe and pid. there are no other financial or personal competing interests. authors’ contributions k.s. conceptualised the paper, collected data and analysed the results. l.c. was involved in data collection and management. w.v.r. conceptualized the paper and analysed the results. e.k. collected data and analysed the results. j.m. and h.v. conceptualized the paper. j.j. conceptualized the paper and analysed the results. all of the above contributed to the final draft of the paper. references adams, j.v., 2009, ‘understanding function and other outcomes in cerebral palsy’, physical medicine and rehabilitation clinics of north america 20, 567–576. http://dx.doi.org/10.1016/j.pmr.2009.04.002 adnams, c.m., 2010, ‘perspectives of intellectual disability in south africa: epidemiology, policy, services for children and adults’, current opinion in psychiatry 23, 436–440. http://dx.doi.org/10.1097/yco.0b013e32833cfc2d american psychiatric association, 2013, diagnostic and statistical manual of mental disorders, 5th edn., american psychiatric association, arlington, washington, dc. berry, l., biersteker, l., dawes, a., lake, l. & smith, c., 2013, south african child gauge 2013, children’s institute, 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(a combine pilot study and validation of the tests’ in normal greek population – aged from 11 years till 11 years and 11 months)’, annals of general psychiatry 9, 1. united nations, 2015, united nations millennium goals, viewed 18 june 2015 from http://www.un.org/millenniumgoals/ van duijn, g., dijkxhoorn, y., noens, i., scholte, e. & van berckelaer-onnes, i., 2009, ‘vineland screener 0–12 years research version (nl). constructing a screening instrument to assess adaptive behaviour’, international journal of methods in psychiatric research 18(2), 110–117. http://dx.doi.org/10.1002/mpr.282 world health organization, 2008, the global burden of disease: 2004 update, who, geneva, switzerland. appendix 1 appendix: items included in the final database unique number surname name date of birth address centre cspid team linked to centre home language gender social circumstances home – family structure social economic status – family income category grant transport assistive devices – wheelchair buggy splints standing frame hearing aid glasses aac level of educational support icd11 diagnosis probable health condition co-morbid probable health condition aetiology chronic medical conditions outcome – what has happened to the child who left the centre chronic medication category chronic medication 1 chronic medication 2 medical intervention therapeutic intervention (non-cspid) other services available at the centre, for example, horse riding date of assessment of classification systems (gmfcs, macs and cfcs) (self-care) macs score gmfcs score cfcs score self-care classification score – feeding self-care classification score – drinking self-care classification score – dressing self-care classification score – tooth brushing self-care classification score – toileting self-care classification score – total date of assessment p-scales p-scale score communication – speaking p-scale score communication – listening p-scale score exploring mathematics p-scale score physical education cspid interventions date of reassessment of classification systems macs score gmfcs score cfcs score self-care classification score – feeding self-care classification score – drinking self-care classification score – dressing self-care classification score – tooth brushing self-care classification score – toileting self-care classification score – total date of reassessment p-scales p-scale score communication – speaking p-scale score communication – listening p-scale score exploring mathematics p-scale score physical education footnotes 1. this process is described in a paper by mckenzie j, pillay n, duvenhage cm, du plessis e and jelsma j: ‘implementation of educational provision for children with severe and profound intellectual disability in the western cape: from rights to reality which is in preparation’. 2. report on activities of the provincial teams for children with severe to profound intellectual disabilities (cspid), for the period april 2012 to march 2013, submitted to the wced. 3. draft framework for therapeutic and stimulation programme: children with severe to profound intellectual disability, developed by provincial cspid team november 2012, submitted to wced. 4. department of basic education (2015) the draft south african policy framework for the provision of quality education and support to children and youth with profound intellectual disability. abstract introduction and background aim of the investigation research method results of the investigation discussion of the results conclusion acknowledgements references about the author(s) aletta m. moll department of psychology of education, college of education, university of south africa, pretoria, south africa garfield bester department of psychology of education, college of education, university of south africa, pretoria, south africa citation moll, a.m. & bester, g., 2019, ‘factors that relate to sport participation of adolescents with a mobility impairment ’, african journal of disability 8(0), a614. https://doi.org/10.4102/ajod.v8i0.614 original research factors that relate to sport participation of adolescents with a mobility impairment aletta m. moll, garfield bester received: 24 jan. 2019; accepted: 24 june 2019; published: 23 sept. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there are multiple factors that make it difficult for learners with a mobility impairment to participate in sport, if not impossible. unfortunately, it is not known which of these factors can be considered as the most important ones. objectives: the main objective was to obtain clarity on the factors that differentiate best between learners who participate in sport and those learners who are not participating. method: in total, 140 boys and girls with different types of mobility impairments participated. information was obtained on inevitable factors such as age and gender, structure factors such as type of school and hostel dwelling and personal factors such as emotions and relationships with parents and peers. results: four factors emerged that explained 22% of the variance in the distinctive characteristics of the group that participates in sport and the non-participating group. age was the most important variable explaining 9% of the variance followed by trust (an emotional variable), gender and health. conclusion: children with a mobility impairment should be encouraged to start participating in sport at an early age. specific attention should be given to girls who are more reluctant to participate. health is a factor that can inhibit sports participation; however, it should not be overemphasised. the emphasis should rather be on the development of trust, which will help adolescents with an impairment to take responsible risks in an adaptive sports environment. keywords: mobility impairment; sports participation; adolescents; adaptive sport; disability. introduction and background the development of children incorporates a physical component that requires schools to involve children in a variety of physical activities, exercise programmes or sport participation initiatives. zourikian, jarock and mulder (2012:12-1) differentiate between physical activity, exercise and sport in the following manner: physical activity is defined as any activity that comprises some form of physical effort and voluntary movements that contribute to energy expenditure, for example walking, dancing or any activity causing a person’s body to work harder than normal. exercise also involves physical action, voluntary movements and energy expenditure. this form of physical activity is specifically planned, structured and repetitive. generally, it does not involve any kind of competition. according to zourikian et al. (2012:12-1) sport also involves physical activity and exercise but in sport, there are specific rules that should be adhered to and training programmes that should be followed to excel and reach particular goals (zourikian et al. 2012:12-1). participation in physical activity, exercise or sport has numerous benefits for individuals. the most positive outcomes are the improvement in physical health, strength building, enhanced coordination and motor skills, and improved cardiovascular health (allender, cowburn & foster 2006:826). virgilio (2012:5) identified the following physical benefits from being physically active: weight control, controlled blood pressure, reduced risk of heart diseases, avoidance of some cancers and type 2-diabetes, reduced cholesterol levels and the development of strong bones and muscles. another important aspect of sport participation or being involved in any kind of physical activity is the impact that it has on emotional healing and psychological wellbeing (coakley & dunning 2000:477). sports participation provides a positive outlet for aggression and stress and helps alleviate depression and anxiety. not only does it improve mental functioning and concentration but also facilitate self-confidence and a positive self-image (coakley & dunning 2000:477). athletes with a disability who participate in sport exhibit higher levels of positive mood, increased wheelchair mobility skills, show lower levels of tension and depression, and an improved state of health and wellbeing (groff, lundberg & zabriskie 2009:320, 324‒325). participation in sport also plays a significant role in healthy social development and interaction. allender et al. (2006:826) found that although most people recognised the health benefits, this was not their main reason for participation in sport. the factors such as enjoyment, social interaction and support were more common reasons for participation in sport. in light of the importance and benefits of sport, it is alarming to see that children in general are becoming less involved in sport. according to mcveigh and norris (2012:43), south african children show trends of obesity and overweight and less than one-third of the children participate in sufficient physical activity on a weekly basis. draper et al. (2014) also reported on the decline of physical activity and concluded as follows: south africa has moved from a c [grade] in 2010 to a d grade in terms of getting children physically active and eating healthily. the time has come for engaging parents and communities for advocacy and social mobilization. (p. s104) previous research indicates various reasons for non-participation in sport. crawford and godbey (1987:8) identified three categories of constraints: intrapersonal (a lack of self-confidence, encouragement or a lack of information about opportunities), interpersonal (lack of leisure partners or social interaction skills) and structural (lack of finances, transportation or lack of time). kirk and kirk (1993:86) established that certain internal factors such as low self-esteem, lack of confidence, lack of general information, conflict between personal values and athletic goals, fear of failure and lack of decision-making skills could be regarded as possible barriers. singer, hausenblas and janelle (2001:517) identified the following possible barriers with regard to sport participation: lack of physical skills, lack of confidence, unrealistically difficult goals and too many vague and conflicting goals. a number of external factors can also be identified as possible barriers which prevent sport participation. such factors are lack of role models and mentors, stereotyping, discrimination, admission criteria, socio-economic status, family expectations and peer pressure (kirk & kirk 1993:86). singer et al. (2001:517) identified barriers such as lack of time for proper training, personal and family responsibilities and lack of social support. the barriers mentioned may or may not apply to athletes with a mobility impairment. mobility impairment is a category of disability that includes people with varying types of physical disabilities. it specifically refers to the inability of a person to use one or more of his or her extremities, or a lack of strength to walk, grasp or lift objects (colorado state university 2016:1). mobility impairment can include an inability to move around as easily as others, limited movement of arms or legs, decrease in strength or control of the muscles and abnormal or impaired coordination. it is, thus, a disability that interferes with a person’s ability to perform tasks that require motor control and coordination. in some adolescents, the impairments are visible and evident and in other adolescents, the impairment may be less obvious. the use of mobility aids such as canes, crutches, walkers, wheelchairs and scooters is normally an indication of the severity of the disability (davis et al. 2011:80). to facilitate sport participation among adolescents with a mobility impairment, barriers should be eliminated as far as possible. moran and block (2010:2) mention four of the most common barriers. firstly, the coaches fear liability. they fear a player with a disability will get hurt, which may result in parents taking legal action or that the athlete’s adaptive equipment (crutch or artificial arm) would injure another athlete. secondly, many coaches agree that athletes with a disability deserve ‘the right to participate’ but they lack the knowledge to appropriately meet their needs. thirdly, parents are concerned regarding the remarks of other athletes about their own child’s disability. parents also fear for their child’s safety as they are concerned that their child might get hurt or harm other children. fourthly, there is a lack of appropriate programmes, especially in small rural areas. each form of disability and mobility impairment has different requirements, which complicate matters even more. skučas (2013:85) identified the reasons that spinal cord injured athletes gave for not participating in sport. the reasons were a lack of adapted sports facilities, limited independence, lack of time, financial problems, transport problems and lack of coaches and sports specialists. in a study conducted by stephens, neil and smith (2012:2067) among permanent wheelchair users, the following barriers to sport participation were identified; medical barriers, emotional barriers, a lack of information and stereotype views held by others. mainstreaming was one of the early models used to accommodate learners with a disability in the regular educational environment. mainstreaming is defined as the integration of learners with a disability into the ordinary school without changes in curriculum, organisation or teaching strategies (department of basic education 2011:51). mainstreaming, as well as the later approaches of integration, stems from the normalisation principle, which states that people with a disability have the right to life experiences that are the same as, or very similar to, those of others in society (landsberg, krüger & nel 2005:7). the goal with mainstreaming in an educational environment is to include learners with a disability in the mainstream as far as possible alongside normal developing peers. this also applies to a sports context. the implication of mainstreaming, according to pangrazi and beighle (2014:13), is that learners with a disability can participate in physical education and sporting events on an equal level with peers not having a disability, without any changes or adaption of the activities. however, it is not always possible to accommodate all learners successfully without any adaption. it is thus understandable that mainstreaming has been criticised for neglecting to provide for learners with a disability. aim of the investigation from the available literature, it seems that there are multiple factors that make it difficult, if not impossible for learners with a mobility impairment to participate in sports. unfortunately, it is not known which of these factors can be considered as the most important ones. to determine the importance of these factors it would be helpful to categorise the factors in some way or another. in the current investigation, the possibility of three categories is proposed. firstly, there are inevitable factors that cannot be changed, treated or manipulated such as age, gender, type of mobility impairment and the onset of the disability. secondly, there are factors related to structure (crawford & godbey 1987:8) such as the type of school, hostel dwelling, transportation, finance and the availability of mentors or coaches. thirdly, there are personal factors (crawford & godbey 1987:8) such as emotional stability, self-confidence, goal orientation, self-concept, fear of failure, depression, relationships with parents and relationships with friends. if the factors are categorised, the question arises as to the importance of these categories or the factors in each of the categories. the current investigation was, therefore, planned to obtain clarity on the factors that differentiate best between learners who are willing to participate in sport and those learners who are not interested. with this intention in mind, the first aim of the investigation was to establish how certain factors in each category facilitate or inhibit sports participation of adolescents with a mobility impairment. the second aim was to identify the most important factors in this regard. research method sampling procedure and ethical considerations certain conditions were set regarding the selection of the respondents. the respondents had to be adolescent boys and girls. there were two reasons for focusing on adolescents. firstly, sports involvement becomes more constructive and organised during adolescence, which compels adolescents to make a choice regarding their participation. secondly, some of the measuring instruments (such as the emotional profile index) need objective introspection that might be problematic for younger learners to answer. another condition was that the respondents had to be proficient in either afrikaans or english. the questionnaires used to gather the data were only available in the two languages since most learners in south africa are taught in either of the two languages. lastly, the respondents had to have a mobility impairment. it was decided that any form of mobility impairment could be included in the sample, ranging from the most severe disability to an almost unobtrusive impairment. learners who were mobility impaired but also suffered severe intellectual limitations, which would have made it impossible for them to understand the items in the questionnaire, were excluded from the sample. due to the conditions mentioned above, purposeful sampling had to be used. some of the schools that accommodate adolescents with a mobility impairment also accommodate adolescents who do not have a mobility impairment, which makes random sampling impossible. other schools accommodate adolescents with a mobility impairment and adolescents with intellectual challenges which again makes it difficult to conduct random sampling. schools that accommodate learners with special educational needs in the different provinces of south africa were included in the sample. these schools were identified from the databases provided by the respective provincial departments of education. once possible schools were identified, the respective departments of education were approached to obtain permission to conduct the research in their districts. most of the departments granted permission for the research. the school principals were then approached. once the principals granted permission, the parents were approached to seek their permission and finally the willingness of the learners to participate in the research was ensured. consent was obtained from all the participants who took part in the investigation. confidentiality was guaranteed and no identifiable information was made available. the only risk for the participants was the inconvenience for some of them to complete the questionnaire. every participant had the right to withdraw from the research at any time. ethical clearance was granted by the university under whose auspices the study was carried out. an attempt was made to include all the adolescents with a mobility impairment in each of the selected schools. a further attempt was made to assist selected learners to complete the questionnaires in order to keep the attrition of participants to the absolute minimum. in total, 140 (78 boys and 62 girls) learners participated. their age ranged from 14 to 20 with an average age of 16.81 and a standard deviation of 2.15. the provinces, the number of schools and the number of learners included in the final sample were: gauteng (8 schools, 74 learners), north west (1 school, 13 learners), northern cape (1 school, 11 learners), eastern cape (1 school, 14 learners) and free state (1 school, 28 learners). different types of mobility impairment were included in the sample. cerebral palsy, caused by abnormal development of the brain, was the most common mobility impairment among the respondents in the sample. the number of respondents in each category of mobility impairment was: hemiplegia (15), paraplegia (15), quadriplegia (6), cerebral palsy (44), spina bifida (and other bone deformities) (25), muscular dystrophy (and other muscle weaknesses) (22), amputee (5) and multiple sclerosis (8). the majority of the respondents (72%) had a congenital impairment compared to 28% who acquired the mobility impairment after they were born. measuring instruments the questionnaires used in the investigation correspond with the three categories previously identified. to measure inevitable factors respondents had to provide general information about themselves such as gender, age, school grade and home language. they were asked to indicate which mobility impairment they had and whether it was a congenital or an acquired impairment. respondents also had to rate their current state of health on a six-point scale ranging from good to bad. the respondents had to indicate whether they currently participate in sport. the term sport participation was explained to the learners and typical examples of sport offered by most of the schools were listed in the questionnaire. the learners also had the opportunity to add other sport types they engage in to the list. after the information on their sport participation was obtained, information on structure factors was required such as the environment in which they participate (at school or at a venue away from school; with other learners who have a disability and/or learners without a disability). information on the type of school (mainstream or special needs school) and hostel lodging were also obtained. to obtain information on personal factors, the emotional profile for each respondent was obtained. a questionnaire to measure the relationships with parents and peers was also conducted. emotional profile the emotions profile index (epi) is a measuring instrument developed by plutchik and kellerman (1974). they identified eight primary emotions which were coordinated in pairs of opposites. the index consists of 12 traits, which are paired in all possible permutations, through a 62-item forced-choice questionnaire. the 12 traits are adventurous, affectionate, brooding, cautious, gloomy, impulsive, obedient, quarrelsome, resentful, self-conscious, shy and sociable (kellerman & plutchik 1968:1109–1110). a definition for each trait is provided. the respondent is asked to indicate his or her preference for one of two traits. each time a trait is chosen, the score on one or more of the eight basic emotional dimensions increases (kline 2000:339). from the 12 traits, 8 basic bipolar emotional dimensions are derived (louw 2004:69). they are: timid (protection) versus aggression (destruction) trustful (incorporation) versus distrust (rejection) control (exploration) versus discontrol (orientation) gregarious (reproduction) versus depression (reintegration). the test-retest reliability of the epi provided a reliability coefficient 0.9 and the split-half reliabilities for the different dimensions were timid (0.80); aggression (0.77); trust (0.89); distrust (0.61); control (0.78); discontrol (0.75); gregarious (0.90) and depression (0.71) (louw 2004:75, 2015:34). relationships with parents and peers fourie (2001:178) compiled a parent-adolescent relationship questionnaire to obtain information from adolescents regarding their relationships with their parents. the questionnaire consists of 43 items. he also compiled a questionnaire to measure adolescents’ relationship with friends, how comfortable they are with their friends, how big their circle of friends is and to what extent adolescents prefer to be with their friends. the questionnaire consists of 25 items. both questionnaires were answered on a six-point scale ranging from ‘it is exactly how i experience it’ (6) to ‘it is definitely not how i experience it’ (1). the higher the obtained score, the better the relationship. the cronbach’s alpha reliability coefficient for the section on parent-adolescent relationship was 0.95 and 0.77 for the section on the relationship with friends. procedure the researchers visited all the respondents at their respective schools. arrangements had to be made to ensure that the visits did not interfere with the academic programme of the school. other factors, which had to be kept in mind, were fixed transport arrangements for the children, the daily routine of the parents, extra-curricular activities of the children and the house rules of the boarding school. the questionnaires were completed in the afternoon after the official school hours. at four of the schools, it was possible to administer the questionnaires to the respondents as a group, but at the remaining eight schools, individual sessions with respondents were necessary. most respondents were able to complete the questionnaire in 35 min but no time restriction for completing the questionnaires was set. verbal instructions were given to the respondents for the completion of the questionnaire. the exact same instructions were also provided on the questionnaire. one of the researchers was constantly present during the completion of the questionnaires to clarify any language uncertainties. four learners who spoke an african language at home voluntarily completed the developed questionnaire to identify possible language difficulties and uncertainties with regard to certain items in the questionnaire. any ambiguities that arose were explained to the respondents. the respondents were asked to indicate their answers on the questionnaire. in some cases, the researcher, teacher, occupational therapists and physiotherapists assisted the respondents who experienced difficulties in fine motor skills which impacted on their writing. the questionnaires were carefully checked to ensure that they were fully completed before the data was captured. results of the investigation the first aim of the investigation was to establish whether certain factors facilitate or inhibit sports participation of adolescents with a mobility impairment. for this purpose, two groups were created: learners who participate in sport and those who do not. the two groups were then compared with regard to the variables in the three categories (the inevitable, structure and personal factors). in some instances, the variables provided discrete data (e.g. boys/girls or mainstream/special school). in such instances a x2-value was calculated, which appears in table 1. other variables such as relationships with parents and friends provided continuous data, which enabled the calculation of a t-value to test for significant differences between the means of learners who participate in sport and those who do not. the results appear in table 2. table 1: differences with regard to gender, type of school, hostel dwelling, time of acquired impairment and type of mobility impairment of learners who participate in sport and those who do not participate. table 2: differences with regard to age, health, social relationships and emotions of learners who participate in sport and those who do not participate. from the results in table 1, gender showed a significant difference between the two groups. more boys participated in sport compared to girls. in total 58 of the 78 boys (74%) with a mobility impairment participated in sport compared to girls where 31 of the 62 (50%) participated. most of the boys in the sample participated in basketball and bowling followed by cycling. most of the girls participated in basketball followed by soccer and cycling. basketball and cycling seem to be popular sport types among boys and girls with a mobility impairment. no significant differences were obtained with regard to the type of school the learners attended. of the 8 learners in the sample who attended mainstream schools, 7 participated in sports (87%) while 82 of the 132 learners (62%) in special schools participated in sports. the observed difference was insignificant, probably because of the small number of learners in mainstream schools. likewise, no significant differences were obtained with regard to hostel dwelling, the type of mobility impairment or the onset of the disability. with regard to the results in table 2, age and health showed significant differences. learners with a mobility impairment who participate in sport were significantly younger compared to those who do not participate. as expected, those who participate in sport reported significantly better health conditions compared to the group that does not participate. no significant differences between the two groups were obtained regarding the support they enjoy from social relationships (relationship with parents and friends). with regard to the measured emotions, trust (and its opposite, distrust) showed a significant difference. those learners with a mobility impairment who participate in sport have a significantly higher level of trust and a significantly lower level of distrust compared to those who do not participate. learners who participate in sport also showed higher levels of gregariousness. no significant differences between the two groups could be shown with regard to timid, control, discontrol, aggression or depression. the second aim was to identify the most important factors that differentiate best between the group that participates in sport and the group that does not participate in sport. for this purpose, a stepwise forward discriminant analysis was performed. the following independent variables were used: gender, type of school, hostel dwelling, onset of the impairment, type of impairment, age, health, relationship with parents and friends as well as the emotional constructs. the results appear in table 3. table 3: discriminant analysis of learners with a mobility impairment who participate in sport and those who do not participate. in a discriminant analysis the independent variable that differs the most between the identified groups, enters the model first. in this instance, it was age that explained 9% of the variance in the distinctive characteristics of the group that participates in sport and the non-participating group. the proportion explained was significant: f(1,131) = 13.42; p < 0.01. the next variable to enter was trust explaining an additional 8% of the variance between the members of the two groups. this additional proportion was significant: f(2,130) = 13.70; p < 0.01. the third variable to enter the model was gender explaining 2% more of the differentiation not explained by age and trust: f(3,129) = 11.20; p < 0.01. health was the last variable to enter the model. it explained an additional 2% of the distinctive characteristics of the two groups with f(4,128) = 9.49; p < 0.01. none of the remaining independent variables could explain a significant larger proportion of the variance between members of the two identified groups. in total, age, trust, gender and health explained 22% of the variance in the distinctive characteristics of the group that participates in sport and the non-participating group. discussion of the results from the results of the current investigation, four factors emerged which, to some extent, explain the difference between a group of adolescent learners with a mobility impairment who participate in sport and a group that does not participate. three of the four factors fall in the inevitable category. no factor in the structure category (such as the type of school or hostel dwelling) made a significant contribution to the explained variance. only one factor in the personal category, namely trust, explained a significant proportion of the variance between the learners in the two groups. according to the results, age seems to be the most prominent differentiating factor, explaining 9% of the variance between the two identified groups. it seems that younger learners with a mobility impairment are more inclined to participate in sport than older learners. a possible reason might be that younger learners are less affected by negative comments and criticism on their sport participation compared to older learners. one of the manifestations of adolescent egocentrism is generally known as imaginary audience, which is an exaggeration of the attention adolescents believe other people are paying to them. they become preoccupied with how others may judge or evaluate them (lin 2016:393). this behavioural pattern increases with age (bester 2013:407; frankenberger 2000:343–354), which might explain the reluctance of older learners to participate in certain activities, including sport-related activities. although age has been identified as an important variable that contributes to the difference between learners who participate in sport and those who do not participate, the age when the disability occurred did not play any significant role. the onset of an individual’s mobility impairment causes great changes in all aspects of the individual’s life. individuals with an acquired physical disability experience loss of independence that they previously enjoyed; loss of body integrity and mobility; loss of pre-existent roles and often a loss of social relationships (psarra & kleftaras 2013:79–99). therefore, it is generally assumed that individuals with a congenital disability are in a better position to adapt to their circumstances (bogart 2015:107–109). based on this assumption it was expected that a difference in sport participation would exist between those learners who differ with regard to the onset of their disability. such a difference could, however, not be shown in the current investigation. trust explained an additional 8% of the variance over and above the 9% already explained by age. according to the measuring instrument that was used, the trait ‘trust’ is an indication of emotional stability. it refers to the ability to control your emotions and to respond to crises in a calm and responsible way. people who possess trust accept the course of their lives, demonstrate hope and show confidence in themselves and other people. trust is fundamental in any interpersonal relationship (rotenberg et al. 2010:1086). adolescents may not take a conscious decision to trust people, but they develop a sense of trust over time. the ability to trust other people is just as important as the feeling of being trusted by others (preble 2015:433). having opportunities to trust and to be trusted is, therefore, a crucial part of adolescents’ affective experiences and supports their capacity to enjoy a meaningful life (rooney 2010:347). this is also applicable to a sports context and might possibly explain the higher level of trust (table 2) for those who participate in sport, compared to those who do not participate. gender differences were also identified. more boys with a mobility impairment participated in sport compared to girls with a mobility impairment. this phenomenon also occurs in learners without a mobility impairment. according to vilhjalmsson and kristjansdottir (2003:370), studies have repeatedly shown that boys outnumber girls in team sports such as soccer and basketball, whereas girls outnumber boys in individual and medium to low-intensity sports such as gymnastics and swimming. more girls than boys engage in physical activity for appearance, health and fitness-related reasons and more boys for the sake of competition, demonstration of masculine ability, and the pursuit of victory (vilhjalmsson & kristjansdottir 2003:370). slater and tiggemann (2010:619–626) attempted to gain a deeper understanding of the reasons why girls ceased participation in sport and other physical activities. the girls in their sample provided a number of reasons, inter alia a loss of interest in the activity; sport interfering with social activities; competence; non-availability of sport at the school; injury; practical reasons such as transport arrangements; poor team relationships; conflict with other boys and girls; the coach and the influence of friends and family. one has to accept that health will inhibit the sport participation of adolescents with a mobility impairment and, therefore, it is not surprising that health was identified as a variable that distinguishes between participating and non-participating learners. however, it should be mentioned that health was not identified as the most important variable. health only explained an additional 2% of the variance that was not explained by age, trust and gender. having a mobility impairment does not always imply that adolescents experience additional health issues. while some types of mobility impairment result in extensive healthcare needs, other conditions do not. young et al. (2007:663–664) investigated health-related quality of life among children with cerebral palsy. some of the children experienced pain, discomfort and tiredness but some of these children were proud of their accomplishments despite the problems that accompany their disability. according to kostanjsek et al. (2011:1475–1482), adolescents may suffer from a variety of health conditions, but to obtain a full understanding of how they experience their health condition requires comprehensive information on the impact of the condition. krahn, walker and correa-de-araujo (2015:s198–s206) found that the impact of a mobility impairment varies according to the type of limitation and the condition underlying the impairment. some adolescents who acquire a mobility impairment through injury can more readily differentiate their disability from their health status. for other adolescents, their health status may directly lead to their disability (e.g. diabetes that can lead to the loss of a limb). many factors (e.g. socio-economic status, age, gender and quality of education) may affect the impact of the mobility impairment and may lead to even poorer health conditions. conclusion three of the four factors that contributed to the distinctive characteristics of participating and non-participating learners fell within the inevitable category. these factors cannot directly be manipulated but there are guidelines that can be considered when dealing with these factors. children with mobility impairment should be encouraged to start participating in sport at an early age. younger children are less sensitive about the mistakes they make or comments made by other people. older adolescents are more self-conscious, which may create resistance towards sport participation. the development of trust was the only manipulative variable which emerged as an important variable. this directs an appeal to parents, teachers and also sports coaches to support and encourage learners with a mobility impairment to foster trust in their lives. with more trust the possibility of taking responsible risks increases, which can facilitate their willingness to participate in sport. since girls are less inclined to participate in sport, specific attention should be given to address their reluctance in this regard. health is a factor that can inhibit sport participation; however, it should not be over emphasised. the emphasis should rather be on information regarding adaptive sport opportunities and encouragement to participate in an adaptive sport environment. the investigation has limitations that open new possibilities for future research. in the current investigation, no significant difference in sport participation could be obtained between mobility-impaired learners in mainstream schools and those in special schools. however, only eight learners in the current sample attended mainstream schools, which complicates a final conclusion in this regard. the sport participation of mobility-impaired learners in a mainstream school needs to be investigated in more detail. it was mentioned earlier that information regarding adaptive sport could enhance the participation of mobility-impaired learners. such information did not form part of the current investigation, which should be considered as a limitation. information on adaptive sport has to be incorporated in future research as a possible factor that may explain why some learners participate in sport and others not. only 22% of the variance between the two identified groups (participating and non-participating learners) could be explained with the independent variables used in the research project. that leaves 78% unexplained. there must be other variables that contribute to the proportion of the unexplained variance, which creates possibilities for future research. not only information on adaptive sport but also variables such as interest, attitude, self-confidence and motivation can be considered in this regard. acknowledgements the authors wish to thank the support received from academic qualification improvement programme (aqip), granted by the university of south africa. the manuscript originates from a doctoral study by the corresponding author under the supervision of the second author. the corresponding author, a.m.m., completed the qualification through the university of south africa. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.m.m. did the literature study, compiled the measuring instruments and did the field work. g.b. assisted with the development of measuring instruments and did the analysis of the data. ethical considerations ethical approval for this research was obtained from the ethics committee of the college of education at the university of south africa (ethics ref: 2015/11/18/07543840/55/mc). funding the research project received no specific grant from any funding agency in the public, commercial or non-profit sector. data availability statement data sharing is not applicable to this article as no other data sets were created or analysed in this study. disclaimer the views expressed in this article are our own and not an official 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canadian hemophilia society, viewed 14 may 2019, from https://www.hemophilia.ca/files/chaptr%2012.pdf. article information authors: frances e. owusu-ansah1 gubela mji2 affiliations: 1department of behavioural sciences, kwame nkrumah university of science and technology, ghana 2centre for rehabilitation studies, university of stellenbosch, south africa correspondence to: frances owusu-ansah postal address: school of medical sciences, kwame nkrumah university of science and technology, po box ks 99, kumasi, ghana, west africa dates: received: 13 apr. 2012 accepted: 05 oct. 2012 published: 16 jan. 2013 how to cite this article: owusu-ansah, f.e. & mji, g., 2013, ‘african indigenous knowledge and research’, african journal of disability 2(1), art. #30 5 pages. http://dx.doi.org/10.4102/ ajod.v2i1.30 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. african indigenous knowledge and research in this original research... open access • abstract • introduction • characteristics of african indigenous knowledge • afrocentric methodology and disability research in africa • conclusion • acknowledgments    • competing interests    • authors’ contributions: • references abstract top ↑ this paper seeks to heighten awareness about the need to include indigenous knowledge in the design and implementation of research, particularly disability research, in africa. it affirms the suitability of the afrocentric paradigm in african research and argues the necessity for an emancipatory and participatory type of research which values and includes indigenous knowledge and peoples. in the predominantly western-oriented academic circles and investigations, the african voice is either sidelined or suppressed because indigenous knowledge and methods are often ignored or not taken seriously. this paper posits that to be meaningful and empowering, african-based research must, of necessity, include african thought and ideas from inception through completion to the implementation of policies arising from the research. in this way the work is both empowering and meaningful for context-specific lasting impact. introduction top ↑ the thrust of this paper is to heighten awareness, stimulate new thoughts and generate discussion on the wealth of indigenous knowledge. african researchers need to persist in developing and using alternative methods of studying our reality and refrain from sticking to the research pathways mapped out by western methodologies, within which many have been trained. whilst it neither seeks to negate nor denigrate known western methods of investigation, it intends to challenge researchers and african scholars in particular into alternative methods of inquiry as far as the investigation and preservation of indigenous knowledge is concerned for the development and empowerment of african peoples and particularly persons with disabilities.knowledge or science, and its methods of investigation, cannot be divorced from a people’s history, cultural context and worldview. worldview shapes consciousness and forms the theoretical framework within which knowledge is sought, critiqued and or understood (sarpong 2002). almost all knowledge has cultural relevance and must be examined for its particular focus. from this perspective it is dangerous, if not oppressive, to hail any one method of investigation as universal (asante 1987). according to asante, the hallowed concepts and methods within western thought are inadequate to explain all of the ways of knowing because ‘universality can only be dreamed about when we have “slept” on truth based on specific cultural experiences’ (asante 1987:168). therefore, he argues that all cultures and the indigenous ways of knowing arising from them are to be respected and valued in their uniqueness. although still inchoate, it is most gratifying to see that some african scholars (tanyaniwa & chikwanha 2011; ntumngia 2009; pence & nsamenang 2008; nsamenang 2006; mkabela 2005; mpofu 2002; mpofu 1994) have taken on the important yet daunting task of making relevant to the african reality, western theories and constructs believing that african knowledge has much to enrich existing western knowledge and methodologies. african knowledge and methods of knowing have yielded results and contributions that have been discounted by many and even sometimes by the african scholars (nsamenang 1995). contributions made by africa and her people to history and civilisation are conspicuously missing from text books for formal education and generally remain unknown to many (ngara 2007). silenced contributions from ancient egyptian education to philosophy, mathematics, architecture, medicine (bargblor 2003) and library science (zulu 2008) are just a few. a quick review of the literature reveals that africa has historically made a host of contributions to world civilisation (asante 1990; derricourt 2011) which remain unknown and subliminally perpetuate the myth that african and or traditional african societies are incapable of rigorous scientific inquiry. characteristics of african indigenous knowledge top ↑ indigenous knowledge or african knowledge, here used interchangeably, is experiential knowledge based on a worldview and a culture that is basically relational. the spirit of the african worldview includes wholeness, community and harmony which are deeply embedded in cultural values. a person becomes human only in the midst of others and seeks both individual and collective harmony as the primary task in the process of becoming a true person (sarpong 2002; sarpong 1991). like its peoples, acquisition of knowledge is collective and community oriented. central to the african worldview is the strong orientation to collective values and harmony rooted in a collective sense of responsibility – a ‘collective ethic’ – which acknowledges that survival of the group derives from harmony through interdependence and interconnectedness (mkabela 2005; sarong 2002; sarpong 1991).a helpful example comes from a south african colleague who engaged rural indigenous women by means of focused group discussions in her quest to understand the concept of health from an indigenous perspective. she learned that for the rural indigenous women of southern africa health was basically about relationships! they believed that ill health occurred when relationships have broken down. in their indigenous thinking, even when restoration to health is sought through the biomedical approach, wholeness was possible only when broken relationships have been mended and restored because a person is most healthy when she or he is in harmony with others! (durie 2004). african knowledge, and its method of acquisition, has a practical, collective and social or interpersonal slant. the works of mpofu (2002) and nsamenang (2006) show that indigenous conceptions of intelligence, for example, emphasise the practical, interpersonal and social domains of functioning and are quite differentiated from the cognitive ‘academic’ intelligence that dominates western concepts of the construct. likewise, learning for the african child is mostly peer oriented and participatory with less adult instruction (nsamenang 1995; nsamenang 2006; pence & nsamenang 2008) which is consistent with a generally collective african self-concept (mpofu 1994). as a knowledge system, it is characteristically oral and passed on from generation to generation in the context of community living and activities (sarpong 1991; mkabela 2005). considering that culture is the ‘lens’ through which a person perceives, interprets and makes sense of his or her reality, if we speak of the inclusion of african indigenous knowledge in any investigation, we would be speaking about the examination of african reality from the perspective of the african and not with the african on the periphery. however, oral tradition, characteristic of indigenous knowledge systems is often, although erroneous, looked down upon relative to the written tradition. partly because indigenous knowledge is mainly oral and not written, and partly because it is people-centered and sometimes not so easily ‘measurable’ (emeagwali 2003), it has been mistaken by many as simplistic and not amenable to systematic scientific investigation. however, its rich complexities are found in the community ceremonies and rituals, namely, story-telling, proverbs, folktales, recitation, demonstration, sport, epic, poetry, reasoning, riddles, praise, songs, word games, puzzles, tongue-twisters, dance, music, and other education-centered activities (ngara 2007). it is prudent to say that african indigenous knowledge is not without limitations. some of these are the tenacious continuity of practices and beliefs that lack openness and flexibility to necessary or constructive changes. there is a tendency to forget that, just as any other type of knowledge, it is subject to change from economic, environmental and social forces (tanyanyiwa & chikwanha 2011) and therefore its acceptance must be subject to critical observation and analysis. however, limitations notwithstanding, before the advent of western methods of scientific inquiry african knowledge and methods have successfully guided its peoples in all spheres of functioning, including the spiritual, social, educational, agricultural, political and economic (tanyanyiwa & chikwanha 2011; ntumngia 2009; pence & nsamenang 2008; pence & marfo 2008; nsamenang 2006; mpofu 2006; zulu 2006; levers 2006; emeagwali 2003; sarpong 2002; nsamenang & lamb 1995; sarpong 1991; asante 1987). it is from this perspective that the authors are of the view that african knowledge and methods of knowing must drive african research if it is to be meaningful to its peoples. afrocentric methodology and disability research in africa top ↑ authors affirm that asante’s afrocentric method arising from his works (asante 1987; 1988; 1990), termed ‘afrocentricity’, would be an appropriate complement to qualitative methodology in disability research in an african context because the philosophical and theoretical paradigm underlying afrocentricity is consistent with the african worldview. afrocentricity is a paradigm that has at its core the understanding of the african identify as rooted, centred and located in the african culture in all aspects – spiritual, social, political and economic. it is the examination of the african reality from the perspective of the african; one that places the african experience at the core, recognises the african voice and reaffirms the centrality of cultural experience as the place to begin to create a dynamic multicultural approach to research (mkabela 2005).it is noteworthy that afrocentricity is not just about africa or the african culture. instead, its fundamental aim is that all cultural centres must be respected and not impaired by colour or geography. instead, to be ‘centred’ is to be located as an agent, not as ‘the other’ (mkabela 2005), the basis of which is equal and respectful mutual exchange and synthesis of information. to this end, afrocentricity encourages cultural and social immersion as opposed to scientific distance in research as well as the use of tools and methods indigenous to the people being studied. this way, indigenous peoples are active participants in the articulation of the views, wishes, concerns and research questions that they deem important to their cultural context and experience. social immersion would provide researcher knowledge about and familiarity with the history, language, philosophy, and myths of the people under study, and reduce misinterpretation, perpetuation of myths and researcher imposition (mkabela 2005). in effect, the afrocentric paradigm does not only advocate cultural immersion, indigenisation of tools and methods of investigation that african peoples can use to make sense of their own realities but also the interpretation of research data from an indigenous african perspective. succinctly put: this means that the method differs markedly in its reflexive sensitivity to its data and the manner in which it analytically explores the data. the aim is to be sufficiently detailed and sensitive to actual social contexts and to investigate the methodological bases or orderly character of ordinary social activities. this means that the researcher should understand that what s/he does and how s/he does it is specific to the culture (a situated response), the problem, and dynamics of the particular context. to achieve the understanding of this cultural framework requires indigenous african people’s involvement and control of research (mkabela 2005:181) this ‘participatory’ approach allows professionals to learn with, by and from indigenous communities and to create a working relationship in which people’s priorities and values become more fully expressed in research. the indigenous communities within which research is conducted are not treated as ‘informants’ but ‘significant participants’ and as ‘equals’ in both the process of research and the decision-making processes that bring about policy changes which affect their communities (mkabela 2005). more importantly, a research methodology that is collaborative emphasises and strengthens the african value of collective responsibility and affirms the centrality of african indigenous ideals and values as legitimate frames of reference for conducting research, from data collection to analysis and implementation. afrocentric and qualitative methods are similar and complementary as both assume the use of interpretative schemes that must be understood and have the character of the local context articulated. however, core to the afrocentric paradigm as already articulated, is the position that to be afrocentric, research must involve indigenous people in all aspects and stages, from beginning to the end, and must be unique to the social structure and cultural values of african indigenous communities. it encourages a spiral methodology of data collection – community, participants, researchers and decision-makers all interacting in a synergistic and bidirectional manner (mkabela 2005), consistent with the african value of oneness. therefore, for meaningful african-based disability research, it is important that the african view is not discounted because learning does not take place in a vacuum. true learning, and indeed adult learning, occurs when the learner relates new material to existing ones. the african culture, with its relational values and emphasis, is the milieu within which the african learns best and makes sense of her or his world. the african can make contributions to the world by understanding and being grounded in its own knowledge system vis-a-vis those of others because ‘true education’ is when one has learned one’s own as well as those of others. that is why it is important that the african scholar, researching in africa, particularly those trained outside of africa or trained in western-oriented methodologies, reacquaint themselves with their own african knowledge systems. the ‘western educated’ african, knowledgeable in western concepts and methods, may be alienated from self because of a lack of adequate knowledge about his or her own culture and indigenous knowledges and or self-imposed emulation of foreign ways of knowing and being. he or she may, therefore, be crippled in the ability to indigenise western acquired knowledges and skills within the african cultural context (nsamenang 1995). it is not surprising that a tendency to adhere to western tools and methodologies in african research is one hurdle in the process of the indigenisation and integration (azuma 1984) of disciplines from african perspectives (mpofu 2002; nsamenang 1995). undoubtedly, there are many challenges in the process of indigenising science and research in africa, given the predominance of western constructs in science (azuma 1984) and the lack of respect and recognition for indigenous methods as valid forms of knowledge (nsamenang 1995). in addition to this are the constraints and difficulties of publication in reputable international journals for african scholars and the general assumption that one form of knowledge is better than the other and that for indigenous knowledge to be true and relevant it has to follow western methods and ways of knowing. one may ask: is research in africa unique? why and how is the afrocentric method and its embedded process of indigenisation essential to disability research in africa? how can disability research in africa maintain its own unique identity whilst embracing western methodologies? the position of this paper is that research in africa, in general, is unique because of uniqueness of culture. that is not to say that it is so unique as to be completely divorced from all other human experiences and knowledge. uniqueness, as used here, is meaningful in the context of the african experience and worldview which is arguably different from those of the western world. if so, how do we preserve the endangered indigenous knowledge and the communal contexts within which this knowledge is nurtured and passed on? how, for example, can the african scholar return to her or his roots to facilitate the preservation of african knowledge systems, for the inclusion of african ways of knowing into existing ‘mainstream’ knowledge systems, the failure of which alienates the african from self and community? we acknowledge that these are questions with neither easy nor ready-made answers. they are raised to stimulate ideas and discussions on the way forward. basically, this paper affirms suitability of a participatory research methodology such as proposed in the afrocentric paradigm for disability research in africa because there are issues related to disability that are uniquely african. for example, the highest number of persons with disability is the poor and marginalised who are concentrated in low-income countries such as those on the african continent which also has the largest number of the world’s poorest peoples (mitra, posarac & vick 2011). therefore, poverty and disability are unfortunately home to africa. the notion of understanding disability has been an evolving concept in that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full participation in society on an equal basis with others (un 2006). from this perspective, disability is no longer viewed as an individual tragedy but rather as a form of oppression in which people with impairments are disabled by multiple barriers of discrimination and social exclusion (danso, owusu-ansah & alorwu 2012). albert & harrison (2006) quoting yeo (2001) reiterate this concern about disability research: traditional research often involves wealthy non-disabled outsiders questioning people about their lives. this is not a reliable way of getting information where there are big power differences and where questioners are not trusted friends. to get consent is not sufficient, as few people in situations of poverty and exclusion will refuse to be questioned by people with more power and authority. it is therefore essential that disabled people are fully involved in future research, including setting the agenda. (p. 14) with regard to disability research, african persons with disability carry a double burden of exclusion by virtue of the neglect of african ways of knowing and also by being persons with a disability. persons with disability are calling for society to stop perceiving them as objects of pity but as capable individuals who are contributing immensely to the development of society, including disability research. on the other hand, research within a social model of disability recognises the interaction of impairment with the social conditions that construct disability. modern african scholars have this perception about the response of society towards vulnerable groups and the person with disability mbeki 1997): among the yardsticks by which to measure a society’s respect for human rights, to evaluate the level of its maturity and its generosity, is by looking at the status that it accords to those members of society who are most vulnerable, disabled people, the senior citizens and its children (p. i). within this understanding, research that claims to be objective and neutral is inadequate if it does not challenge social oppression. rather, a participatory and emancipatory research paradigm, such as the afrocentric method, is called for with the goal being to: … understand how the [oppression] of disabled people happens and discover ways to challenge it. the key to unlocking this process of transformation lies in the knowledge and life experience of disabled people themselves. this is why like indigenous ways of knowing they need to take the lead at all stages of the research process (albert 2006:30). barnes (2008) identifies an emancipatory research agenda based on the social model as having the following features: • it exposes disabling barriers in society and points toward change. • it is accountable to disabled people through the research process, including the control and dissemination of the research product. within this framework, capacity building is seen as a two-way process whereby persons with disability expand researchers’ knowledge of disability and at the same time themselves acquire valuable research skills. more importantly, total inclusion of indigenous persons with disabilities in research based on mutual respect, such as suggested by the afrocentric method, solidifies participants’ own definition of self-determination and empowerment. fostering self-esteem and empowerment are particularly important in disability research because of the close link between disability and poverty (mitra et al. 2011). disability, made worse by poverty, robs people of their dignity and sense of self. in a situation such as this, research that simply treats participants as ‘outsiders’ can only fuel an already eroded and fragile sense of self. conclusion top ↑ in conclusion, reiterating earlier points, proposing the afrocentric methodology for disability research in a way that is both participatory and emancipatory does not by any means negate western methodology. instead, in the african wisdom of openness expressed in the proverb ‘the river is flooded by tributaries’, we dare say that to get a more complete and realistic understanding of the world we need to value all the available alternate ways of knowing and investigating (i.e. that of africa and those of others) to jumpstart the african intellect and imagination towards rich, indigenous african-centred research.the critical issue here for africans scholars, who have mostly been educated outside africa, is to find creative ways of using our rich cultural heritage and multilayered knowledge systems to understand our own reality and to empower our people; to pioneer and churn out african-centred research that empowers, liberates and reduces all shades of poverty, particularly the poverty of voicelessness amongst persons with disabilities. thus emboldened, we can take our rightful place in the globalised world, a world that would be challenged to accept that ‘one size does not fit all’ and that all forms of knowledge are valid and valuable. the world needs to revise its impression that one can only be a researcher if one has undergone formal education because: we were all born as researchers; research is the creating element that runs through our minds, bodies and feelings to guide, protect, and assist us to move to the next level of creation. without research, human beings would quickly or slowly approach their extinction (mji 2009:7). indigenous persons with disability in africa, even the illiterate, do have something to contribute to the process of knowledge acquisition. indigenous african knowledge is vulnerable because many of the carriers of this knowledge are dying without the documentation of these knowledges. to preserve such knowledges, a new path must be charted and a paradigm shift is imperative. it must be neither negating of existing western methods of investigation nor polarised in outlook because that would undermine opportunities for the creation and generation of new knowledge, but must seek to respect all forms and sources of knowledge. this paper advocates room for alternative ways of exploring and knowing so that there is no imposed one way to investigate. each methodology, however seemingly different, can add value and enhance the process of creation of new knowledge as each brings insights and tools on how to perceive and interpret the world. in effect, this paper is primarily calling that the african ways of enquiry be used as the cornerstone for the process of research within the african cosmology and secondarily for it to be integrated into the global stage as part of the knowledge of the people of the world because it is time for the african voice to be heard! acknowledgments top ↑ competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this article. authors’ contributions both authors conceptualised the paper. f.e.o.a. 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author(s) cindy wiggett-barnard changeability, stellenbosch, south africa citation wiggett-barnard, c., 2025, ‘integrating scholarship and practice: a journey in disability advocacy and community empowerment’, african journal of disability 14(0), a1677. https://doi.org/10.4102/ajod.v14i0.1677 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper integrating scholarship and practice: a journey in disability advocacy and community empowerment cindy wiggett-barnard received: 31 jan. 2025; accepted: 23 may 2025; published: 30 nov. 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction this article reflects on the intersection of disability scholarship and practice by examining how the academic contributions of leslie swartz have shaped – and been extended by – the work of changeability, a community-based organisation in south africa’s cape winelands. drawing on my dual role as disability activist and chief executive officer (ceo), this article explores how changeability’s initiatives operationalise swartz’s insights on systemic barriers, health inequality and participatory inclusion. it argues that non-profit organisations are not merely sites of implementation but are active contributors to theory, adapting and advancing academic frameworks in response to lived realities. when one explores the work of leslie swartz on google scholar (2024), it is clear just how influential his scholarship is. his work is cited in 21 616 other sources, and he has a prolific publishing record. in 2024 alone, a search on him yields 116 results. his work is primarily in the disability field, where he explores a variety of topics. swartz’s work is also complemented and expanded on by other disability scholars from the developing world, such as ghai’s (2015) insightful study on disability in the indian context, botha’s (2021) study on blindness and rehabilitation in south african non-profit organisations (npos) and schneider’s (2016) exploration of poverty and disability in south africa. swartz’s critical engagement with systemic barriers (e.g. lack of transport and cost-effective services, such as found for example by eide et al. 2015), his advocacy for integrated health approaches (e.g. van rooy et al. 2012:761–775) and his emphasis on participatory models of inclusion (e.g. swartz 2023:1–1) have shaped both my theoretical understanding and practical efforts in fostering disability rights and social change in the cape winelands of south africa. i am the ceo of changeability, a npo based in stellenbosch, south africa. changeability serves over 400 beneficiaries with disabilities in five impoverished communities of the cape winelands. changeability provides health, awareness, community and skills support through a variety of projects (changeability n.d.). i have served as ceo of changeability since completing my doctorate, under the supervision of swartz, in 2013. my dissertation explored disability employment attitudes and practices in south african companies (wiggett-barnard 2013). my role at changeability allows me to be a disability scholar, activist and non-profit leader. that being said, i will be remiss if i don’t take swartz’ advice that: [d]isability scholars need to appraise more carefully the investments of the more powerful (which includes us as non-disabled white south africans) in how the less powerful are presented and called upon to participate in the production of knowledge on disability. (swartz & marchetti-mercer 2018:485) the following paragraph will reflect on my positionality. as both the ceo of changeability and the author of this article, i occupy a dual position that offers unique insight but also presents the potential for bias. my close involvement in the organisation’s strategy and operations inevitably shapes my interpretations of its successes and challenges. while this proximity enables a nuanced and informed analysis, it also necessitates critical self-awareness. i acknowledge that my position as a leader and advocate may influence how i frame the impact of our work. in line with swartz’s caution regarding the influence of powerful actors, i recognise the responsibility to interrogate my own assumptions and to remain accountable to the voices and experiences of the communities we serve. this reflection is offered not to negate the value of insider knowledge but to show the importance of transparency, reflexivity, and humility in bridging scholarship and activism. this article reflects on the work of swartz and changeability, with specific reference to the intersection of addressing systemic barriers, promoting health and enabling participation and inclusion for people with disabilities. insights for this article were gathered through a combination of donor reports, in-person interviews, and group observations. donor reports provided valuable data on project outcomes, while interviews with staff, peer supporters and participants offered direct feedback on their experiences. observations during group sessions and peer support meetings allowed me to see first-hand how our initiatives are implemented and how role players engage with them. this approach provided a clear and practical understanding of how changeability’s work is shaping outcomes in the community. addressing employment barriers ‘people with disabilities experience barriers in the integration phase of employment’ (mckinney & swartz 2019:2298). the recommendations from this qualitative study on 72 people with disabilities includes ensuring that all phases of the employment process be accessible and appropriate for people with disabilities and that barriers to employment be addressed and acknowledged by human resources departments and employers. through changeability’s awareness and sensitisation campaigns, we actively challenge these barriers, working to dismantle employer stigma and promote meaningful workplace inclusion. our approach to sensitisation training, both with corporates and local government, adhere to the principle of ‘nothing about us without us’ (as explained by charlton 1998). when we engage with employers, we guide them through the phases of employment similar to mckinney and swartz (2019), by addressing job application forms, the interview protocol, selection and disclosure practices. we echo the conclusion that: [i]n order to successfully recruit and select people with disabilities, it is important that those responsible for the phase of employment be aware of the barriers facing people with disabilities. in addition, they should have knowledge, skills and understanding relating to disability and people with disabilities. (p. 2314) my own insights gained from my phd (wiggett-barnard 2013), under the supervision of swartz, informed us additionally on the employer perspective with regard to disability employment. with a clear understanding of opinions and attitudes from managers, the influence of company practices and policies and potential initiatives to enhance disability employment, as well as clear recommendation, research was able to inform the content of the sensitisation training performed by changeability. these insights were also incorporated into changeability’s latest online training offering to the hospitality industry, hosted on syteme.io from september 2024. in addition, our skills development programme has given people with disabilities skills and directly promoted employment opportunities while addressing the high levels of poverty and inequalities that swartz highlight for this population. ‘disabled south africans are, collectively, amongst the nation’s poorest, even within a country characterised broadly by atrocious levels of economic inequality’ (swartz & watermeyer 2006:1). against this backdrop, changeability recruits, trains and employs people with disabilities as peer supporters. over the past eight years, 23 people with disabilities have undergone accredited training, received a wage and gained work experience through this programme. these peer supporters are employed part-time to render support services to adults with disabilities and their families in the community in which they live and work. changeability’s peer support model equips individuals with disabilities to take on leadership roles and drive change within their communities. we use the world health organization’s community-based rehabilitation (cbr) model of service delivery (ilo, unesco & who 2004). this model dictates that people with disabilities, their families, their communities and service providers should form partnerships to improve opportunities and social inclusion. as such, we recruit, train and employ unemployed people with disabilities as peer supporters. each of these peer supporters is tasked with finding and performing needs analyses with people with disabilities in their own community. in just over three years, we have given peer-to-peer support to over a 1000 people with disabilities. we continue to provide ongoing training and guidance to our peer supporters, and they serve as our main community representatives. despite the success of our initiatives, there are challenges to the success in addressing employment barriers. one major barrier is the resistance and lack of motivation to change within some employers, where entrenched attitudes and misconceptions about disability slows progress. in addition, the ongoing need for resources to sustain our training and support for both employers and peer supporters remains a challenge. finally, ensuring that our peer supporters can maintain their roles while balancing their own needs and responsibilities within the community also presents a constant logistical and training challenge. nevertheless, we continue to adapt our approaches to overcome these barriers and drive meaningful change. health promotion strategies the following quote introduces the importance of promoting physical activity among marginalised groups, such as persons with disabilities: participation in regular physical activity promotes physical health and psychosocial well-being. interventions are thus needed to promote physical activity, particularly among groups of individuals, such as persons with disability, who are marginalised from physical activity. (conchar et al. 2016:152) swartz co-authored this qualitative study on factors that facilitate and hinder participation of 15 south african adolescents with cerebral palsy (cp) in physical activity. the study found four themes that influence physical activity participation. these were physiological factors (inherent to the individual’s own body), intra-psychological factors (inherent to the individual’s own thought processes), social factors (relationship influences) and macro-environmental factors (structural factors and environmental influences). the study concluded that: ‘… the development of programmes to increase participation in physical activity will need to be innovative and take careful account of these realities if they are to be effective and sustainable.’ (p. 162) while this qualitative study was limited to youths with cp only and can thus not provide a comprehensive picture of all the barriers and facilitators that participation of physical activity can address, it did provide very similar findings from our own experiences at changeability. changeability’s weekly community-based exercise groups, which support individuals with disabilities in improving mobility, health and social connections, exemplify how integrated programmes can transform lives and communities. in 2024, we had 261 people with disabilities participating in our five community-based exercise groups. from the start, we realised that we would need to address the multiple challenges to exercise that people with disabilities face. if we compare our experience with the themes identified by conchar et al. (2016), there is a very clear link between the research that swartz contributed and our approach. in order to address the physiological factors, we partner with stellenbosch university’s sport science department and conduct twice yearly health checks with exercise group participants. the department’s students also adapt the exercises to different abilities and take functional limitations into consideration. our exercise groups are regular and consistent, giving participants the peace of mind and safe spaces to address intra-psychological concerns. the group setting and regular contact with peers, as well as involvement of significant others is often the main reason that participants attend our group exercise. and finally, the provision of free, disability-friendly transport and accessible venues address the macro-environmental factors. in addition to the promotion of health, the work of swartz and colleagues also call for strategies to address inaccessible healthcare for persons with disabilities (pwds) (eide et al. 2015, as well as tomlinson et al. 2009). among the barriers identified by eide et al. (2015), a lack of transport and availability of health services was prominent. eide et al. (2015:12) calls for an equitable health services, ‘addressing the specific barriers that exist for different types of service users’. watermeyer and swartz (2023) also emphasised health discrimination and exclusion and that disability not only influences the quality of healthcare received but also that poor healthcare also causes disability. tomlinson et al. (2009), in their earlier study, also identified that barriers to accessing health services for people with disabilities should be a research priority. in two rural south african studies by swartz and colleagues (vergunst et al. 2015, 2019), the researchers ‘found that persons with disabilities have poorer health outcomes than persons with no disabilities’ (2019:2676), and that better access to healthcare is needed in south africa. the earlier study by vergunst et al. (2015) emphasised that both practical and attitudinal barriers to accessing healthcare in south africa must be addressed. a good illustration of how this can be achieved in practice took place in our macassar service area. our social workers and peer supporters were instrumental in identifying the barriers’ experiences by our beneficiaries at the local healthcare facility. they then went about building relationships with the health care facility manager in addressing these barriers, especially for wheelchair users. this led to the subsequent adoption by the local healthcare facility of a new protocol for health service delivery to wheelchair users specifically. this protocol was reviewed by the macassar disability forum and changeability staff and have been in place for the past two years. these initiatives mirror swartz’s argument that health interventions must address both individual and societal dimensions. enabling participation and inclusion in a co-authored article (mji et al. 2011), an ‘african way of networking around disability’ is explored. the article reports on the successes and challenges of the african network for evidence-to-action on disability (afrinead) network and applies the concept of ubuntu to encourage collaboration. the afrinead was created to translate research to real-world positive changes for pwds in africa by providing networking and collaboration opportunities among all stakeholders (stellenbosch university 2025). from the creation of afrinead in 2007, it became clear ‘that integral to the process of developing sustainable networks within an african cosmology is the need to pay close attention to the relationships amongst participants’ (i.e. all relevant stakeholders, from researchers to activists and those living with a disability themselves) (mji et al. 2011: 366). later in the article, the challenges for afrinead are mentioned, of which one is the central role that persons with disabilities themselves should play, both in informing research, but also in bringing about change in their communities. when one compares the work performed by swartz and colleagues in establishing afrinead, there are clear parallels with the work that changeability does via its awareness project. from the time that we established the awareness project at changeability in 2014, i was cognisant of the fact that we need to strengthen the voices of people with disabilities themselves, as well as form a collective voice for disabled persons organisations (dpos) in the cape winelands. the first network of this nature that we consequently established was the stellenbosch disability network (sdn). the sdn is a civil network and was established in october 2014. it is an open network for any organisation and members of the public and interested parties wishing to share information, raise awareness and ensure the inclusion of disability in local planning and service delivery in greater stellenbosch. the sdn works to advance the full inclusion of, and opportunities for, people with disabilities in all aspects of development, planning, learning, working and living. the sdn envisions a stellenbosch where all people with disabilities are acknowledged and enabled to thrive and participate fully in all aspects of public and private life. in 2018, changeability also established a similar network in the helderberg area, situated to the near south of stellenbosch. the helderberg disability network (hdn) was established to: share information and build a database on disability-related services and organisations, identify and record challenges faced by the disability sector and people with disabilities, ensure the inclusion of disability in local planning and services, avoid duplication of services and maximise the use of limited resources, raise awareness and sensitise the public on disability-related themes, build capacity within organisations to increase their efficacy and success and share responsibility for the betterment of people with disabilities in the community. in order to make information more readily available to those who work and live in the stellenbosch and helderberg area, changeability created a website to share the details of local dpos during 2020–2021 (mapping disability n.d.). it is crucial that when one does research for disability, even something as simple as gathering information from existing organisations, that it becomes readily accessible and available for all stakeholders to use. in addition to the sdn and hdn, changeability facilitated four forums for people with disabilities in the communities of macassar (city of cape town), groendal (franschhoek), cloetesville and kayamandi (stellenbosch). our main outcome for the forums was to create a system of collaboration and networking to identify needs and do creative problem solving for and by people with disabilities in their own communities. in the past year, we facilitated 16 forum meetings (one meeting per community per quarter). the ultimate goal of changeability’s awareness project is to promote inclusive planning, service delivery and recognition of people with disabilities in the communities that we serve, as well as developing the skills of people with disabilities to become activists themselves. this resonates with the work that swartz and colleagues have done via afrinead and beyond. in addition to advocacy and networking efforts towards disability inclusion, it is also stated that ‘persons with disabilities require a range of supports to be integrated into their communities, to participate in activities and to have access, on an equal basis to persons without disabilities’ (hunt et al. 2022:8269). again, swartz co-authored this scoping review on community support services in lowand middle-income countries. important topics covered by this scoping review, combining peer reviewed and grey literature, found key support structures needed under each ecological level (individual, family, community and policy and/or environmental level). the work of changeability reflects such a multi-level approach to community support for our beneficiaries. we have one-on-one support from trained social workers and peer supporters to address support needs on the individual and family level. we have community-based support and exercise groups, as well as partnerships with local service providers to address disability-related needs on a community level. finally, with our forums and our work on tender with stellenbosch municipality, we address the policy and environmental level of support. swartz’s commitment to participatory approaches is reflected in another co-authored article that explored the partnerships between academia and disabled persons’ organisations (kett et al. 2019). the article discusses how capacity is built, the advantages and disadvantages of collaboration, as well as the long-term outcomes of disability-inclusive research. changeability’s involvement with academia mirrors the findings for this article. we have people from academia on our volunteer management committee, as partners in our exercise groups and as researchers into our community work. from the kett et al. (2019) article, dpo members suggested: ‘… that one key learning provided through partnership with a dpo is the training they can provide around disability’. this benefit was also highlighted in another study by swartz and colleagues (rohleder et al. 2008). this study confirmed that the ‘community work’ that students do ‘achieve a broadening awareness among students from different backgrounds about the notion of community’ (p. 253) we have found this to be the case, especially in our work with students from stellenbosch university’s sport science department. we have also been able to, as the article found, be a bridge between researchers looking for participants and identifying potential participants, especially where there is a clear benefit to the community. finally, we have also found that our beneficiaries with disabilities welcome being photographed as part of our reporting and marketing, but that their dignity should be protected at all costs. this is similar to the findings of swartz and colleagues (mji et al. 2014) on whether people with disabilities in rural south africa mind being photographed in research. conclusion this article reflected how swartz’s theoretical insights have shaped changeability’s practical work. it reflected on the work of swartz and changeability, with specific reference to three areas, namely addressing employment barriers, promoting health and enabling participation and inclusion for people with disabilities. as far as addressing employment barriers, changeability’s peer support programme has provided skills training and employment opportunities for previously unemployed adults with disabilities while also engaging with employers and hospitality professionals. health promotion is also a priority for changeability and through our weekly exercise groups and collaboration with stellenbosch university, we systematically address the barriers to accessing healthcare that eide et al. (2015) and watermeyer and swartz (2023) highlighted. finally, our organisation is enabling participation and inclusion through the establishment and facilitation of the sdn and hdn, as well as a crucial online resource that share the details of local dpos. this echoes the work performed by swartz and colleagues in establishing afrinead. this article highlighted the intersection of academic scholarship and community work, demonstrating how the integration of both approaches can be instrumental in addressing the complex barriers that people with disabilities face. this synergy contributes to the ongoing efforts to create a more inclusive and equitable society. this commitment to disability activism is clearly stated by swartz (2018) as follows: i view my work on the african journal of disability as a form of academic activism; i believe i am playing a role in assisting a number of people who would not otherwise publish to express and disseminate their thoughts and experiences. (p. 124) the emphasis on participatory models of inclusion is promoted by swartz, as illustrated by the following quote: ‘the focus for disability inclusion should not be solely or primarily on bodily impairments but on barriers to participation’ (swartz 2023:1). he also calls on science to be more inclusive, not only in being included as a topic on social justice but also to become more accessible to people with disabilities themselves. as an activist leading changeability, i believe we showcase how the marriage between academic research and practical interventions can work. looking to the future, the integration of swartz’s theoretical insights with changeability’s community-based practice provides concrete opportunities for transforming how disability inclusion is approached in policy, research and service delivery. specifically, the model demonstrates that combining academic frameworks with practical interventions can lead to more sustainable employment for people with disabilities, improved access to health promotion activities and stronger, community-driven support systems. this suggests that inclusive development efforts must prioritise not only service provision but also the empowerment of people with disabilities as leaders and knowledge producers. swartz’s call for science to become more accessible underscores the importance of creating academic spaces where people with disabilities can actively participate – not just as subjects, but as co-researchers and contributors. finally, to further advance disability service-delivery goals, there is also a need for more formal, evidence-based research to be undertaken in collaboration with npos such as changeability, whose impact is often supported by anecdotal evidence, rather than systematically collected data. documenting and analysing the work of npos could produce better and more systematic outcomes, inform inclusive programme design across sectors and ensure that effective disability service delivery is embedded within broader national development strategies and policies. acknowledgements the author would like to thank all individuals and organisations that contributed to the development of this research. competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. author’s contribution c.w-b. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is 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stellenbosch university, viewed 11 december 2024, from http://hdl.handle.net/10019.1/79800. abstract introduction background research methods and design results discussion conclusion acknowledgements references appendix 1 about the author(s) nicola deghaye department of research on socioeconomic policy, faculty of economic and management sciences, stellenbosch university, stellenbosch, south africa health policy unit, department of public health, institute of tropical medicine antwerp, antwerpen, belgium grace leach department of research on socioeconomic policy, faculty of economic and management sciences, stellenbosch university, stellenbosch, south africa citation deghaye, n. & leach, g., 2025, ‘grade repetition among learners with and without disabilities in two provinces of south africa’, african journal of disability 14(0), a1676. https://doi.org/10.4102/ajod.v14i0.1676 original research grade repetition among learners with and without disabilities in two provinces of south africa nicola deghaye, grace leach received: 06 feb. 2025; accepted: 19 june 2025; published: 21 aug. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: it is critical that disability-disaggregated indicators of educational outcomes are developed and monitored in low-and middle-income countries (lmics) to demonstrate whether progress is being made towards educational equality. objectives: to design, test and analyse new indicators of grade progression for learners with disabilities relative to learners without disabilities in south africa. to determine which indicators are the most appropriate for future monitoring. method: we undertook the first-ever quantitative analysis of grade repetition and age-for-grade of learners with disabilities relative to learners without disabilities using student-level data collected in the new education management information system (emis). using a longitudinal student-level dataset extracted from emis, we conducted cohort analyses of grade progression from 2017 onwards, disaggregated by gender and disability category. results: on average, learners with disabilities experienced grade repetition more frequently than learners without disabilities and were older than their peers. grade repetition rates decreased from 2017 to 2023 in mainstream schools in kwazulu-natal (kzn) province but increased in special schools. comparatively, 54% of learners without disabilities who started grade 1 in 2017 progressed to grade 7 without repetition, versus 20% of learners with disabilities (gauteng) and only 12% of learners with disabilities (kzn). conclusion: the high rates of grade repetition among learners with disabilities suggest that reasonable accommodations and curriculum differentiation have not been fully implemented in schools. contribution: there has been a substantial decline in reporting of learner disability status in gauteng province since 2022 which warrants further investigation. keywords: learners with disabilities; grade progression; grade retention; inclusive education; education management information systems, lowand middle-income countries; disability. introduction in recent years, there has been an increased focus on achieving educational equality between learners with and without disabilities and an increasing awareness of the need for disability-disaggregated data to monitor the exclusion of learners with disabilities in education systems. in south africa, routine monitoring by the department of basic education (dbe) has focused on enrolment of learners with disabilities and monitoring of selected inputs (dbe 2014a, 2014b, 2018a, 2020, 2021). unfortunately, increased school enrolment in african countries is not translating into the expected learning outcomes (particularly reading proficiency) among primary school learners (bold et al. 2017). for learners with disabilities, there is an even greater risk that school enrolment will not translate into learning unless reasonable accommodations are provided and teachers are adequately trained in inclusive education (deghaye 2023). consequently, it is critical that disability-disaggregated indicators of educational outcomes are developed and regularly monitored. there are several ways to measure educational outcomes: learning outcomes (such as the proportion of learners who can read for meaning by age 10); educational attainment (highest level of education completed); and measures of school or grade progression, including rates of completion of primary or secondary schooling; rates of completion of school phases at an appropriate age; grade repetition rates (the percentage of learners who repeat a grade either over a period, a school phase or in a particular year); and proportions of children enrolled in school at an appropriate age. learning outcomes have been monitored in south africa for more than a decade in large standardised international studies. however, these studies explicitly exclude learners with disabilities (laroche & foy 2016; schuelka 2013). household surveys in south africa measure disability well but do not measure foundational reading and mathematical proficiency. thus, currently, it is impossible to evaluate learning outcomes, disaggregated by disability status, in south africa. there is evidence that educational attainment is worse among adults with disabilities (moodley 2017). however, measures of educational attainment are lagged variables and provide little information about the current generation of children with disabilities and the educational inequalities they face. researchers have called for monitoring of school progress of learners with disabilities (relative to learners without disabilities) in low-and middle-income countries (lmics). three sets of indicators have been proposed: (1) disability-disaggregated school drop-out; (2) disability-disaggregated grade repetition (kuper, saran & white 2020; office of the united nations high commissioner for human rights 2020; sprunt, marella & sharma 2016) and (3) the percentage of learners who are over-age for grade in primary and lower secondary schools, disaggregated by disability status (a sustainable development goal [sdg] indicator). household survey data indicate that rates of school drop-out among children with disabilities in south africa were almost 50% by age 13 in 2011 (mizunoya, mitra & yamasaki 2018:397). analysis of household survey data has shown that children with disabilities were over-represented among those who were currently repeating a grade in south africa between 2011 and 2017 (mckenzie 2022). household surveys, however, tend to underestimate grade repetition rates compared with school administrative data systems (education management information systems or emis). for example, grade 1 repetition rates in the general household survey from 2014 to 2018 underestimated rates calculated in emis in 2016 by more than 50% in the general school population (van der berg et al. 2019b). indicators which estimate disability-disaggregated age-for-grade, capture the effect of two phenomena: over-age initial enrolment and grade repetition among learners with disabilities. household survey data show that children with disabilities are more likely to be over-age for their current grade than children without disabilities. the only exceptions are children with some difficulty seeing or some difficulty with walking and climbing stairs (mckenzie 2022). in this article, we provide the first ever analysis of grade repetition and age-for-grade of learners with disabilities relative to learners without disabilities in south africa, using longitudinal student-level data collected in emis. this was made possible by the introduction of a student-level emis in south africa, which covers special and mainstream schools and collects data on learner disability status. high rates of grade repetition among learners with disabilities may indicate that the curriculum is not accessible or that reasonable accommodation of learners’ individual needs is not being adequately provided. we estimated various indicators of grade repetition, disaggregated by gender and disability category, as recommended by kuper et al. (2020). we discuss which of these indicators is most appropriate and accurate, and make recommendations as to which indicators should be regularly monitored. this is the first time that cohort analysis has been applied to grade progression among learners with disabilities in south africa. background inclusive education in south africa in south africa, learners with disabilities may enrol in either ordinary (mainstream) or special schools. the key policy documents regulating inclusive education in south africa are: white paper 6 (national department of education 2001) and the screening, identification, assessment and support policy (dbe, 2014a). according to these policy documents, all learners, including learners with disabilities, should have access to four support programmes: (1) curriculum differentiation; (2) specialist staff; (3) specialised or adapted learning, and teaching support material and assistive technology; and (4) training of school personnel. curriculum differentiation refers to the process of modifying, adapting, extending and varying teaching methods and strategies, assessment strategies and the content of the curriculum so that learners with different levels of functioning can learn effectively (dbe 2014; 2014a). the intensity and frequency of support would be higher in special schools, but learners enrolled in mainstream schools should also have access to low-frequency, low-intensity support from all four programmes. there is growing evidence of large gaps in provision of the four programmes of support (deghaye 2023; equal education law centre 2022; human rights watch 2015; kelly & mckenzie 2018; mckenzie et al. 2020, 2021; watermeyer et al. 2016). schooland district-based support teams provide critical support to class teachers in identifying learners with disabilities and in designing and delivering interventions for these learners (dbe 2014a). the services provided by the schooland district-based support teams and special school resource centres should enable learning environments in mainstream schools to become accessible and enable schools to provide reasonable accommodation for learners, where required (deghaye 2023). reasonable accommodation refers to: necessary and appropriate adjustments and modifications that do not impose a disproportionate or undue burden, where needed, in a particular case, to ensure that children with disabilities are able to enjoy their rights (to education) on an equal basis with others (deghaye 2023; united nations 2007). however, in 2017, school-based support teams existed in 99% of gauteng schools and 62% of kwazulu-natal (kzn) schools. comparatively, 81% of school-based support teams in gauteng province received support from the district versus 61% in kzn province (deghaye 2021). these gaps in support are likely to make identification of invisible learner disabilities difficult in many schools in kzn province. the screening, identification, assessment and support (sias) policy (2014) further lays out a process for identifying learners in need of extra support or reasonable accommodation. the first step in the process of either accessing reasonable accommodation (or obtaining a disability label in the school system) is the completion of a learner support-needs assessment by the school-based support team. while 80% of schools in gauteng were able to complete at least one support-needs assessment in 2017, only 43% of kzn schools were able to do so (author’s own calculations, school monitoring survey 2017). this suggests that, at the start of the analysis period (2017), more than half of kzn schools were not in a good position to undertake the process by which learners obtain access to reasonable accommodations or obtain a disability label in the school system. disability status may only be captured in emis once several additional steps are completed and a health professional has confirmed that the learner has a disability (as defined by a set of criteria that are outlined in the sias policy, which include level of functioning and medical criteria). as a result of the various implementation gaps outlined in this section, teachers are not being supported to provide reasonable accommodation of diverse learning needs. for example, the literature shows that the learning needs of learners with sensory disabilities and severe intellectual disability are not being accommodated adequately in schools (human rights watch 2015). there have been substantial developments in education policy for learners with intellectual disabilities (id) since 2017. the identification of id has improved substantially in special schools over the analysis period (personal communication, t. levin, dbe). two new (draft) curricula were released for public comment: a learning programme for children with severe to profound id (in 2016) and a differentiated curriculum (grade r to 5) for learners with mild to severe id who can manage primary school-level content. these curricula must be finalised before they can be fully rolled out. once implemented, there should be no grade repetition for learners who are following these curricula as each student should be following an individual support plan. severe id (sid) years were introduced from 2018 in gauteng province, and from 2020 in kzn province. severe id years have also been introduced in the eastern cape, mpumalanga and the north west province. overall, south africa has a fairly well-developed policy promoting education of learners with disabilities (grimes et al. 2023). unfortunately, except for learners with sid, these policies have not yet been funded (deghaye 2023; equal education law centre 2022; financial and fiscal commission 2020). grade repetition in south african schools grade repetition is meant to allow learners who have not met grade expectations a second opportunity to master the content of that grade and catch up with their peers (kika & kotze 2019). despite being widely used, the evidence of its effectiveness is mixed (kika & kotze 2019; van der berg et al. 2019b). recent evidence suggests that, in the general learner population in south africa, repetition of grade 1 is associated with some improvement in reading scores, but that grade 2 and grade 3 repetition are less effective. learners who repeat an early grade continue to have much flatter learning profiles than progressed learners (wills 2023). grade repetition rates in south africa are high relative to other lmics. in the general learner population, repetition rates are higher in grade 1 and grade 4 than in other primary school grades, and are higher in secondary than in primary school, reaching a peak in grade 10 (van der berg et al. 2019b). education policy stipulates that a learner may only repeat a grade once and only once within each schooling phase (grades 1 to 3; grades 4 to 6; grades 7 to 9 and grades 10 to 12) (dbe 2012; department of education 1998). while grade repetition rates among learners without disabilities have reduced over time, the progression policy has not been implemented universally. the progression policy emphasises that districts and schools must have clearly articulated intervention strategies including early identification of learners at-risk of grade repetition. the school, district and province must develop and implement additional learning opportunities targeted at these learners (kika & kotze 2019). in 2020 and 2021, grade repetition rates declined substantially, because of coronavirus disease 2019 (covid-19) policy decisions to reduce assessment, cancel examinations and trim the curriculum (van der berg et al. 2023a; wills & qvist 2023). in this analysis, we expected to find improved grade progression in 2020 and 2021 among learners with and without disabilities. research methods and design descriptive statistical analysis was used to estimate various indicators of grade repetition, and age-for-grade for learners with and without disabilities using school administrative data collected from all schools in gauteng and kzn provinces who reported in the south african school administration monitoring system (sa-sams) from 2017 to 2023. ethical considerations we received approval to conduct secondary analysis of longitudinal student data from stellenbosch university’s social, behavioural and education ethics committee (eco-2022-25130) and via an amendment (sbe-2024-25130). the project was classified as a low risk project as it involved analysis of secondary data and there was no interaction with any learners during the course of the research. details of any informed consent that was provided by learners were not available to the researchers. the dataset is managed by the michael and susan dell foundation (msdf). the raw data are collected quarterly from schools via sa-sams and is housed in the data driven districts (ddd) operational data store. the provincial departments of education provided written permission for msdf to release the anonymised data, for the purposes of this research project. data description in 2017, 81% of schools in gauteng (2535 schools) and 81% of schools in kzn (4910 schools) reported at least some data in ddd dataset. we are confident that the sample of schools in the dataset is representative of (public-sector) mainstream and special schools in the two provinces. the sample includes some independent schools but under-represents them. each learner is identified by an anonymised unique student identifier, which was used by msdf to link learner data from 2017 to 2023 to create a longitudinal student-level dataset, which we refer to as the ddd longitudinal dataset. the dataset includes student-level data on learner age, grade, gender and disability status. the dataset has previously been used to describe learner progression and grade repetition of learners in ordinary grades (regardless of disability status) (van der berg et al. 2019a). all implausible or incomplete duplicate student records were dropped from the dataset. remaining duplicate records were dropped at random. we combined sid years and ordinary grades to allow inclusion of all learners with id. for example, learners in sid year 1 and in ordinary grade 1 are grouped as grade 1 learners. because the dataset includes the grade of each student in each year, we could tag whether a student was repeating a grade in any year. we tagged the student identifier each time a learner repeated a grade. all analysis was conducted in rstudio 4.4.1 (r core team 2024). data on disability status a total of 40 categories of disability were recorded in the ddd longitudinal data. we grouped these categories into four broad disability categories to allow large enough sub-groups for meaningful analysis: learners with: (1) mild to moderate or (2) severe to profound intellectual disability; (3) specific learning disabilities (sld) and (4) other disabilities, as shown in table 1-a1. the other disabilities category is a very broad category which includes all learners whose primary disability is not an intellectual or learning disability. learners in this group may, in fact, have intellectual or learning disabilities in addition to their primary disability. the disability categories in the emis data do not match the domains of disability in the assessment forms used by district-based support teams and health professionals since 2014. the categories in emis are often based on the presence of a medical condition, while the process of identification in the school system is largely centred on functioning and is aligned with the biopsychosocial model of disability. this introduces a possible source of data error as there is no simple way of matching the categories of disability in emis with those on the assessment forms. in many cases, the data clerk must make a fairly random choice of disability type. mild to moderate id was the most frequently identified disability type in gauteng (43% of learners with disabilities or 18 429 learners in 2019), while other disabilities were most commonly identified in kzn (10 910 learners or 37% of learners with disabilities). in 2019, 69% and 66% of learners with disabilities in gauteng and kzn (respectively) were male. this aligns with trends previously observed in emis data and household surveys in south africa (deghaye 2023) and international evidence of higher rates of intellectual disability among male learners (maulik et al. 2011). completeness of data on disability status in kzn, 64% of schools (3895 schools) reported the enrolment of learners with disabilities each year from 2017 to 2023. in gauteng, from 2017 to 2021, between 58% and 61% of schools (approximately 1900 schools) reported enrolment of learners with disabilities. this declined to 53% in 2022 and 34% (or 1053 schools) in 2024. in the same period, the reported number of learners with disabilities in gauteng province declined sharply from approximately 44 000 learners in 2017 to approximately 28 000 in 2023. this decline was driven by a steady decline in reporting in mainstream schools (shown in table 1, column 1). special school enrolment, by contrast, was fairly stable over the period. in kzn, the reported number of learners with disabilities in mainstream primary schools in 2023 was low, as shown in table 1, but reporting was fairly stable for the rest of the period. table 1: percentage of learners with disabilities currently repeating a primary school grade, by school type. in gauteng province, the decline in reporting was particularly strong among learners with mild to moderate id (whose numbers showed a steady decline over the period, such that they almost halved from 2017 to 2023) and among grades 1 to 3 learners (shown in figure 1 and figure 2). figure 1: reported number of learners with disabilities, by grade: gauteng province. figure 2: reported number of learners with disabilities, by grade: kwazulu-natal province. the drastic decline in enrolment of learners with disabilities observed in gauteng province, particularly in the early grades, is not credible. the reporting problems identified in this study are reported in more detail elsewhere (deghaye et al. forthcoming) and deserve more investigation. from 2021 onwards, the data are unlikely to represent all learners with disabilities enrolled in schools in gauteng, but rather all those whose disability status has been identified and reported and should be interpreted as such. because of the reporting problems identified in gauteng province, we have largely focused on the results in kzn province. methodology our goal was to produce several new indicators of grade repetition, and age-for-grade for learners with and without disabilities which could be produced by the dbe in the future for internal monitoring and external reporting. descriptive statistics are better suited for this purpose than multivariate analysis. descriptive analysis we conducted student-level, cross-sectional analyses of overall grade repetition patterns for the entire population of learners (all learners, in all grades) over the full period of analysis (2017 to 2023) in kzn and gauteng provinces. the accuracy of the descriptive analysis may be biased by increasingly incomplete reporting of disability status in gauteng province from 2022 onwards. no statistical tests were conducted to determine whether the observed differences by disability status were statistically significant as the possible selection bias in the data may make these results misleading. cohort analysis we used cohort analysis techniques previously developed by van der berg et al. (2019a, 2021, 2023b) and applied these techniques (with some modification) to disability-disaggregated data to track learner flows through primary and secondary school. typically, disability status appears to be entered when the learners first enrolled in a school. we analysed one cohort who started grade 1 in 2017, and three cohorts who started grade 8 in 2017, 2018 and 2019, respectively. between 2017 and 2019, reporting of disability status appears to be more widespread in gauteng province than in 2022 and 2023. as the cohort analysis is limited to learners who were identified as disabled before 2019, it is unaffected by incomplete reporting observed in 2022 and 2023 (and thus more representative of the whole population of learners with disabilities). as the student identifier in sa-sams is unique within but not across schools, learners can only be tracked in the cohort analysis if they do not change schools in the analysis period (van der berg et al. 2019a). thus, the cohort analysis follows all learners who remain in the provincial school system and do not change schools during the analysis period (two thirds of students who started in grade 1 in 2017). this has two implications: (1) the cohort is not fully representative of the full student population in gauteng or kzn and (2) we cannot track learners from grade 1 to grade 9 as most learners change schools when they start secondary school (grade 8). this is unfortunate as school progression to the end of grade 9 is a key indicator for sdg 4.5. learners with disabilities change schools at roughly the same rate as learners without disabilities (roughly one in three students changed school in the 7-year period in which we observed them). thus, we believe that cohort analysis of school progression, disaggregated by disability status, is robust. to perform the grade 1 cohort analysis, we restricted the dataset to those children who started grade 1 in 2017. this year was selected as the starting point for the cohort analysis as by 2017, the new emis was in widespread use and most teething problems associated with the system change had been overcome. the period 2017 to 2023 represents the first 7-year period for which data was available to follow a cohort of learners from grade 1 to the point where they should have started the final year of primary school (grade 7) if they did not repeat a grade. it is unfortunate that this period includes 2 years where schooling was dramatically affected by covid-19. results descriptive statistics (full population of learners) the primary school grade distribution of learners with disabilities changed substantially from 2017 to 2023 in both the provinces (shown in figure 1 and figure 2). there is a consistent and substantial decline in the number of grade 1 to 3 learners with reported disabilities in gauteng province from 2017 to 2023 (shown in figure 1). in kzn, the same decline is seen in grade 1, but not in grades 2 or 3 (shown in figure 2). in kzn, there were strong increases in the number of learners with disabilities in grades 5, 6 and 7 after 2020. this suggests reduced dropout or improved grade promotion after 2020 in kzn, in line with the general learner population (van der berg et al. 2023). in gauteng province, some of the reduced enrolment in the early grades could be explained by the introduction of sid years from 2017 onwards. by 2023, up to 2000 learners were enrolled in sid years 4 or higher. many of these learners may previously have repeated grades 1 to 3 multiple times. the much lower number of learners with disabilities in grade 1 over time (shown in figure 1 and figure 2) is more likely the result of reduced identification of disability among newly-enrolled grade 1 learners in later years. alternatively, there could have been a slump in reporting of disability status in emis upon initial enrolment in school (grade 1) from 2020 as school administrators became overwhelmed by additional responsibilities brought about by the covid-19 epidemic. table 1 shows that the percentage of learners with disabilities who were currently repeating a primary school grade declined in mainstream schools in kzn from 2017 to 2023. improvements in progression in mainstream schools from 2020 were probably because of more lenient grade progression in 2020 and 2021 (van der berg et al. 2023a; wills & qvist 2023). however, rates of repetition increased substantially over time in special schools. approximately half of all learners in special schools in kzn (and gauteng) were currently repeating a grade each year from 2020 to 2023. this is alarming and suggests that the covid-19 disruption dramatically disrupted grade progression in special primary schools. grade repetition at this scale will lead to longer waiting times for admission into special schools and larger class sizes (which were already unacceptably large) (equal education law centre 2022). only learners with high-level support needs should be enrolled in special schools, while learners with disabilities who are enrolled in mainstream schools could have low-, moderateor high-level support needs. thus, the higher repetition rates in special schools are likely driven by the higher average level of support among learners with disabilities enrolled in that setting. even so, the current repetition rate in special schools appears to be excessively high. figure 3 demonstrates that, from 2017 to 2023, the average learner with disabilities experienced grade repetition more frequently than the average learner without disabilities. grade repetition rates differ substantially by disability category and the patterns are fairly consistent between provinces. on average, learners identified with sld repeated less frequently than learners with other disabilities. learners with severe to profound id experienced the highest average number of grade repetitions. figure 3: average number of grade repetitions per learner by disability category. the average number of grade repetitions over a period or the percentage of learners currently repeating a grade does not show how grade repetition changes as a child moves through the different levels of schooling. to address this, we examined the frequency of grade repetition for each primary school grade in the period 2017 to 2023. table 2 shows the number of learners who repeated each primary school grade once, twice and up to five times, and what proportion of repeaters are identified as having a disability. in both provinces, there is a tendency for learners with disabilities to be over-represented among learners who repeat grades multiple times. in kzn, learners with disabilities make up 1.2% of all learners, yet represent 5.0% to 6.0% of learners who repeat early grades twice and up to 19.0% of learners who repeat a grade 3 times. it is disturbing to find evidence of learners repeating a single grade four or five times. in gauteng, learners with disabilities make up a very high proportion of learners who repeat an early grade more than twice. table 2: frequency of grade repetition, disaggregated by grade of enrolment: kwazulu-natal. sustainable development goal indicator 4.5.1 calls for monitoring of the percentage of children who are over-age for grade in primary and lower secondary schools, disaggregated by disability status. this indicator captures the effect of late enrolment in school and grade repetition. to test whether this could be calculated in the ddd longitudinal dataset, we examined the age profile of learners with and without disabilities, by grade. figure 4 shows that in kzn in 2023, learners with reported disabilities were, on average, significantly older than learners without disabilities in the same grade. in 2023, the difference is greatest in grade 5 (12.2 months). the disability-related differences in age persist until grade 10. this suggests that over-age learners with disabilities tend to leave the school system in grade 9 or 10. thus, from grade 10 onwards this is not an appropriate disability-disaggregated indicator of educational outcomes. the sdg indicator’s focus on primary and lower secondary school is appropriate in south africa. the indicator was calculated for gauteng province, and the average age for grade was found to be increasing over time. for example, the average age in grade 1 (learners with disabilities) increased from 8.7 years in 2018 to 10.1 years in 2023. we suspect the average age of learners with disabilities is being skewed upwards by incomplete reporting of disability status in 2022 and 2023. as we are uncertain about the accuracy of these results, they are not shown. figure 4: average learner age by grade: kwazulu-natal, 2023. cohort analysis given that the reporting in gauteng province in 2017 was much more complete than in later years, we have reported the results of the cohort analysis in both provinces. figure 5 shows that 12% and 20% of learners with disabilities who started grade 1 in gauteng and kzn in 2017, respectively, progressed to grade 7 without repetition, compared with 54% of learners without disabilities in both the provinces. this is a substantial difference. in both provinces, fewer male learners progressed to grade 7 without repetition than females, regardless of disability status. figure 5 demonstrates that there are substantial differences in grade progression by disability category. a higher proportion of learners with sld progressed to grade 7 than learners with other disability types. an extremely low percentage of learners with severe to profound id progressed through primary school without repeating a grade. figure 5: percentage of learners progressing from grade 1 to grade 7 without grade repetition: 2017 to 2023. finally, we analysed grade progression in three secondary school cohorts. table 3 shows that, in gauteng province, only 10% of the learners with disabilities in the 2017 grade 8 cohort progressed to grade (or sid year) 12 by 2023, compared to 36% of learners without disabilities. in kzn, in the 2017 grade 8 cohort, the differences in progression rates between learners with and without disabilities are less pronounced, but still substantial (23% versus 32%). in both provinces, progression rates to grade 12 vary substantially between the 2017 and 2019 cohorts. grade progression improves in gauteng in later cohorts, for learners with and without disabilities. in kzn, however, grade progression worsens for learners with disabilities in the later cohorts, suggesting that they did not benefit from more lenient grade progression policies in response to the covid-19 crisis. table 3: percentage of learners progressing from grade 8 to 12 without (further) repetition. in kzn province, the subgroup of learners with severe to profound id is too small for meaningful analysis, and results are not shown. more fundamentally, many learners with id are likely to progress to technical or vocational education after grade 9, thus measuring progression to grade 12 is inappropriate. discussion this research provides the first-ever evidence of grade repetition among learners with disabilities in south africa and provides new school-level estimates of age-for-grade among learners with disabilities, relative to those without disabilities. we have shown that rates of grade repetition are higher among learners with reported disabilities than among learners without disabilities in kzn and gauteng provinces in the period 2017–2023. we have also shown that in kzn, in each grade up to grade 9, learners with reported disabilities are, on average, older than learners without disabilities. these results align with previous research which used household survey data from 2011 to 2017 (mckenzie 2022). incomplete reporting in gauteng in recent years meant that some of the full-sample indicators produced unreliable results. despite the flaws in the data on disability category in emis, the analysis shows that grade repetition is higher among learners with intellectual disabilities than among learners who are reported to have sld or other disabilities. again, this confirms mckenzie’s (2022) finding that there are differences in school progression by domain of disability. learners with reported disabilities (of any type) are over-represented among learners who repeat a grade more than once. this finding suggests a priority point for disability screening. every student who is repeating a grade and is still not meeting grade-level expectations must be screened using the processes outlined in dbe’s sias policy (2014). given that few childhood disability screeners have been validated for use by teachers, we suggest that the teacher version of the washington group child functioning module could be used as a screening tool to complement the existing screening process. the child functioning module guides teachers to consider and identify functional difficulties a child may be experiencing in seeing, hearing, mobility, fine motor skills, communicating, learning, remembering, concentrating, controlling their behaviour, coping with change, forming relationships and with anxiety and depression (cappa et al. 2018). this tool should be piloted among south african teachers. in some instances, grade repetition may be an appropriate remediation strategy. but to be successful, it must be linked with the provision of reasonable accommodation for learners with disabilities. the grade repetition rate among learners with disabilities is currently unacceptably high. these findings suggest that there has been over-reliance on grade repetition as a form of remediation among learners with disabilities. these results align with existing literature which suggest that many learners with disabilities are not receiving reasonable accommodation (human rights watch 2015) and that teachers are not receiving enough training or support to provide adequate accommodation to learners with disabilities (deghaye 2021; kelly & mckenzie 2018). over-reliance on grade repetition is likely linked to the south african government’s failure to fully fund and implement the four programmes of support outlined in the sias policy. for example, additional posts for specialist staff in district offices, which are promised in district norms, are only being created incrementally from 2024 onwards for reasons of affordability (dbe 2018b). creating the promised posts in district offices would enable additional support to be provided to school-based support teams and (indirectly) to learners at risk of grade repetition. according to the progression policy, districts and schools should have clear intervention strategies and provide additional learning opportunities for learners at risk of repetition. our findings suggest that learners with disabilities are not being fully considered in these strategies or are not receiving the reasonable accommodations they need. the progression policy may need to be better integrated with the sias policy to ensure that teachers consider reasonable accommodation and curriculum differentiation when developing intervention strategies to prevent grade repetition. grade repetition is costly as it increases the number of years that a student spends in school (van der berg et al. 2019b). the direct cost of an additional learner-year in 2024 is zar 1748 or usd 95 (the per-learner allocation paid to schools by government). the direct cost of an additional learner-year in a special school is much higher (zar 7021 or usd 426 per learner in 2020/1 as equal education law centre (2022). thus, even if one considers only the direct cost of repetition, repetition rates of nearly 50% in special schools are costly to the state. we suggest that additional teacher training on curriculum differentiation and provision of reasonable accommodations, especially during assessment, could reduce reliance on repetition. finalising and implementing the draft curricula for learners with id should also lead to improvements in grade progression. the cost of these interventions could be covered in part by cost savings realised through reduced grade repetition. these results suggest that, before the introduction of the new curricula, most learners with severe to profound id experienced multiple grade repetitions in primary school. this finding demonstrates the need for the new curricula proposed for this group of learners. the new curricula should result in reduced grade repetition among learners with id as learners would follow individual education plans. the differentiated curriculum for learners with mild to severe id must be finalised so that it can be widely implemented. once it is implemented, the 2017 cohort of grade 1 learners with id will form a useful baseline against which to measure the impact of the new curricula on grade progression. recommendations for future monitoring and research the research further aimed to determine which of the estimated indicators were most appropriate and accurate, and to make recommendations as to which indicators should be regularly monitored. as grade repetition is not uniform across grades, and grade-distribution of learners with reported disabilities was shown to be changing substantially over the analysis period, it is difficult to interpret indicators that summarise the experience of the average learner over time (such as the average number of grade repetitions per learner, shown in figure 3, or the percentage of primary school learners who are currently repeating a grade, as shown in table 1). further, because the data were only available for 7 years instead of the full 10 years of compulsory schooling, these two indicators may underestimate grade repetition over the whole compulsory school-going period. grade-specific indicators (such as the average learner age per grade, disaggregated by disability status, shown in figure 4, or the frequency of grade repetition per grade, shown in table 2) are more useful as they are unaffected by changes in the grade-distribution over time. however, these indicators were shown to be highly sensitive to incomplete reporting in the gauteng data. as discussed in the methodology section, the cohort analysis we conducted provides more accurate indicators of grade progression than other indicators presented in this article. therefore, we recommend cohort analysis as the best descriptive indicator of disability-disaggregated learner progress. given that just over half of all learners without disabilities are able to progress to grade 7 without grade repetition, it is unrealistic to expect learners with disabilities (who are often at a tremendous disadvantage to their peers) to do so. instead, we suggest that two modified indicators are regularly tracked: the proportion of learners with disabilities who progress from grade 1 to 7 with one (or zero) grade repetitions, relative to learners without disabilities. the proportion of learners with disabilities who progress from grade 1 to 7 with two (or fewer) grade repetitions, relative to learners without disabilities. these indicators could be estimated for the 2017 cohort using 2024 and 2025 emis data, once it becomes available. the indicator should be disaggregated by gender and category of disability and should ideally be reported separately for special and mainstream schools. this is important, as the very high rates of grade repetition found in special schools require close monitoring. the cohort analysis should be conducted in all provinces. we recommend that a foundation phase cohort analysis be undertaken to provide a timely assessment of how covid-19 impacted grade progression of early-grade learners with disabilities. the 2017 grade 1 cohort represents the last cohort to (potentially) complete foundation phase before the covid-19 disruption. a foundation phase cohort analysis is also critical for investigating whether reduced enrolment of learners with disabilities in grade 1 (shown in figure 1) is because of reduced repetition in the early grades after 2017. the grade 8 cohort analysis may not be appropriate for learners with id as it is often appropriate that learners with id move from the academic school curriculum to technical or vocational education after grade 9. average learner age at the beginning of grade 9 is the most appropriate indicator for monitoring grade progression for learners with id. sustainable development goal indicator 4.5.1 is thus an appropriate indicator at grade 9 level. for all other learners, we recommend that the secondary school cohort analysis be slightly adjusted to estimate: the proportion of learners who progress from grade 8 to 12 with one (or zero) grade repetitions, relative to learners without disabilities the proportion of learners who progress from grade 8 to 12 with two (or fewer) grade repetitions, relative to learners without disabilities. when interpreting the data on grade progression in secondary school, one must consider that learners with disabilities who progress to secondary school are a positively selected group. they may represent learners with disabilities who have the most supportive families, have attended the more inclusive schools or have the highest levels of functioning. these factors cannot be measured in emis and some of them cannot be influenced by the school system. unfortunately, incomplete reporting of student disability status in gauteng in recent years will reduce the accuracy of cohort analysis in cohorts that started grade 1 or 8 from 2021 onwards unless data quality is addressed. disability-disaggregated school drop-out has been recommended as a useful measure of educational outcomes (kuper et al. 2020). however, there is a risk of overestimating school drop-out rates in emis data. household survey data should be used to estimate school drop-out, as done previously by mizunoya et al. (2018). the grade-distribution of learners with disabilities is shown to be changing over the period, with intermediate phase enrolment trending upwards over time and foundation phase enrolment trending downwards in kzn. these trends align with census 2022 data which show that the percentage of people with disabilities over the age of 20 who had completed primary school trended upward from 2011 to 2022 (statistics south africa 2024). grade 1 enrolment of learners with disabilities has, however, been declining in kzn since 2018. the reasons for this are not yet clear and require more investigation. finally, we recommend that multivariate analysis of the kzn data be conducted to identify factors which interact with disability to make certain groups of learners particularly vulnerable to grade repetition. limitations the indicators estimated in this study are not internationally comparable as identification of disability in emis is different to that in all other school systems, except namibia (miet, africa disability alliance and differences 2014). the disability status indicator in emis is narrowlyand medically-defined, and is likely to under-identify student disability (deghaye 2023; dube & mont 2021). we suspect, for example, that there are a large number of learners with unidentified disabilities among those learners who repeat a grade twice or more (shown in table 2). further investigation of the gauteng data on learner disability status is needed. conclusion this study provides powerful new evidence that grade repetition continues to be widely used as a remediation strategy for learners with disabilities. at times, grade repetition may be appropriate and effective for learners with disabilities. however, the current rates of grade repetition among learners with reported disabilities are unacceptably high and suggest that reasonable accommodations and curriculum differentiation have not been fully implemented in schools. we propose that the proportion of learners with disabilities who progress from grade 1 to 7 with one or fewer grade repetitions and the proportion of learners with disabilities who progress from grade 1 to 7 with two or fewer grade repetitions should be adopted as indicators of disability inclusion in schooling. these indicators should be monitored annually relative to learners without disabilities. acknowledgements we would like to thank chris van wyk for assistance in extracting data from the data driven districts (ddd) dataset. this project builds on previous research conducted by servaas van der berg, chris van wyk and the team at research on socioeconomic policy (resep), stellenbosch university. it also builds on a doctoral thesis: ‘measuring enrolment and support for children with disabilities at the school level’ by nicola deghaye (phd, economics, stellenbosch university, 2023, available from https://scholar.sun.ac.za/handle/10019.1/712). competing interests the author reported that they received funding from epoch and optima trusts which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions n.d. and g.l. conceived and planned the analysis. g.l. conducted the analysis. n.d. and g.l. contributed to the interpretation of the results. n.d. took the lead in writing the manuscript. g.l. provided critical feedback and helped shape the research, analysis and manuscript. funding information the authors wish to thank the michael and susan dell foundation for making this data available for analysis and the epoch and optima trusts for funding the research under the auspices of the milaps project. data availability research groups may request access to the ddd-data directly from michael and susan dell foundation once written permission has been obtained from the relevant provincial department of education. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder or agency, or that of the publisher. the authors are responsible for this article’s results, findings and content. references bold, t., deon, f., gayle, m., ezequiel, m., brian, s., christophe, r. et al., 2017, ‘enrollment without learning: teacher effort, knowledge, and skill in primary schools in africa’, journal of economic perspectives 31(4), 185–204. https://doi.org/10.1257/jep.31.4.185 cappa, c., mont, d., loeb, m., misunas, c., madans, j., comic, t. et al., 2018, ‘the development and testing of a module on child functioning for identifying children with disabilities on surveys. iii: field 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persons with disabilities, viewed 20 december 2024, from https://static.pmg.org.za/170530report.pdf. wills, g. & qvist, j., 2023, repetition and dropout in south africa before, during and after covid-19, resep, stellenbosch university, stellenbosch. wills, g., 2023, early grade repetition in south africa: implications for reading, covid-generation working paper, covid-generation, stellenbosch. appendix 1 table 1-a1: grouping of education management information system disability categories used in analysis. abstract background aim of the article methodology results discussion conclusion acknowledgements references appendix 1 about the author(s) solfrid raknes department of health and social care, molde university college, molde, norway siv elin n. sæbjørnsen department of health and social care, molde university college, molde, norway hege c. aarlie department of welfare and participation, faculty of health and social sciences, western norway university of applied science, bergen, norway thrine marie n. bromstad department of health and social care, molde university college, molde, norway mariana j. makuu department of sociology and social work, faculty of arts and social sciences, the open university of tanzania, dar es salaam, tanzania caroline yamala uhuru mama collective, dar es salaam, tanzania sarah hean department of social studies, faculty of social sciences, university of stavanger, stavanger, norway citation raknes, s., sæbjørnsen, s.e.n., aarlie, h.c., bromstad, t.m.n., makuu, m.j., yamala, c. et al., 2024, ‘starting a cultural collective for mothers of children with disabilities: a case study’, african journal of disability 13(0), a1367. https://doi.org/10.4102/ajod.v13i0.1367 original research starting a cultural collective for mothers of children with disabilities: a case study solfrid raknes, siv elin n. sæbjørnsen, hege c. aarlie, thrine marie n. bromstad, mariana j. makuu, caroline yamala, sarah hean received: 08 nov. 2023; accepted: 03 nov. 2024; published: 18 dec. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: caring for children with disabilities in tanzania involves significant challenges, including stigma, limited support and mental health risks. a cultural collective for caretakers of children with disabilities enrolled at a primary school was established to address these issues. objectives: the study aims to explore the experiences of caregivers who started a cultural collective and to assess its impact on their lives in the short term. method: this study used a community-based participatory research (cbpr) approach with a sequential mixed-methods design. data were collected over a period of 8 weeks, while the participants in this study established a collective in dar es salaam. quantitative data were analysed using descriptive statistics, and qualitative data were analysed using braun and clarke’s method for thematic analysis. results: as assessed by a validated and normed questionnaire, patient health questionnaire-9 (phq-9), 63% of the caregivers showed signs of depression before starting work in the collective. economic needs, education and the desire for support were the primary motivations for joining. starting the collective improved social support, fostered agency and began to enhance caregivers’ financial conditions. conclusion: the collective addressed caregivers’ needs for economic improvement, social support and mental support, and the experience was vitalising for the caretakers. contribution: this study deepens our understanding of holistic interventions for children with disabilities and their families in urban africa. it offers valuable insights into a crucial stage of developing contextually relevant interventions for vulnerable, poverty-stricken populations. it provides a model that can be adapted for similar interventions in comparable contexts. keywords: africa; caretakers; children with disabilities; collective; community-based participatory research; peer support; tanzania. background caring for a child with special needs can be a highly demanding and an emotionally taxing experience. the caregivers of children with disabilities navigate many cultural, economic, educational and healthcare challenges (united nations 2019). african caregivers of children with disabilities often lack support structures (gordon & bila 2023; likumbo, de villiers & kyriacos 2021; mkabile et al. 2021). indigenous african beliefs view disabilities as abnormalities or disruptions in the natural order that require restoration. this condition is typically addressed with the help of religious specialists who attribute it to mystical or supernatural causes such as curses, witchcraft, ancestors or divine intervention (ndlovu 2016). hence, caregivers of children with disabilities often face internalised and external societal blame for supposedly bringing misfortune upon their families (mkabile et al. 2021). moreover, in the national context of tanzania, disability still often remains hidden and rarely enters mainstream societal discourse (aldersey 2012; unicef 2023). not surprisingly, against this backdrop, caregivers of children with disabilities are at an increased risk of mental health problems (chen et al. 2023), especially in african contexts (dawkins et al. 2021; greenwood et al. 2022; joel et al. 2018; trafford 2023). adequate support systems for caregivers of children with disabilities are essential to securing a brighter future for their children. research consistently demonstrates that caregivers’ economic stability and mental health are crucial to children’s future outcomes, especially in families dealing with poverty and social challenges (knifton & inglis 2020; wen, goh & de mol 2023). addressing stigma and discrimination by supporting caregivers of children with disabilities is essential for fostering inclusive communities where everyone is valued and respected regardless of ability. tanzania ratified the convention on the rights of the child (crc) in 1991 and enacted the law of the child act (2009) to align with its provisions. furthermore, the country ratified the convention on the rights of persons with disabilities (crpd) in 2009, leading to the establishment of the persons with disabilities act in 2010. this shows tanzania’s commitment to advancing the rights of children and persons with disabilities, although challenges persist in full implementation. in addition, tanzanian policies aim to protect the rights of children with disabilities (e.g., national strategy for inclusive education 2021/22–25/2026, and guidelines for homeschooling by the ministry of education, science, and technology 2023), and these have resulted in a significant increase in school enrolment for this vulnerable group. however, a lack of sufficient, accessible and culturally appropriate support structures and interventions means that children with disabilities in tanzania and their caregivers remain a group at risk of social exclusion, poverty, deprivation and stigma (knifton & inglis 2020; mkabile et al. 2021; sæbjørnsen, makuu & ødegård 2023, silván-ferrero et al. 2020; unicef tanzania 2021; unicef 2023; world bank 2022, 2023). the prevalence of disability among children and youth on the mainland of tanzania is 2.3%, translating to approximately 600 000 individuals. and alarmingly, only 9.4% of families with a member with disabilities are enrolled in any social security schemes (unicef 2023). a review of interventions aiming to support caregivers of children with disabilities suggests that structured parental training programmes can improve parental self-efficacy, especially for those with children under the age of five (hohlfeld, harty & engel 2018). however, none of these studies was conducted in africa, and the effectiveness of such interventions in the african context, including tanzania, is yet to be thoroughly examined (hohlfeld et al. 2018; kakoko, kigadye & hean 2023; mckenzie & mcconkey 2016). there is a notable lack of understanding and evidence base that documents the challenges and the characteristics of local and innovative approaches in place to support the caregivers of children with disabilities, especially in an african context. the scarcity of evidence does not mean that no innovations and initiatives are in place in the african context – quite the opposite, as innovation is often stimulated by crisis and need. low economic resources and a lack of support for children with disabilities and their parents in tanzania means, therefore, it is ripe for social entrepreneurship and the development of innovative and sustainable alternatives to traditional support models, and research on such initiatives (connor, tricia & bent-goodley 2016; teasdale et al. 2023). in summary, the critical challenges faced by caregivers of children with disabilities include stigma and the attribution of disabilities to supernatural causes, limited access to psychosocial support, insufficient implementation of policies aimed at protecting the rights of children with disabilities and scarcity of evidence-based and innovative approaches tailored the african context to caregivers of children with disabilities. this article aims to provide a deeper understanding of caregivers’ experiences of children with disabilities in dar es salaam. it explores the potential of an intervention based on traditional handicrafts and social entrepreneurship to address emotional, social and economic needs. the multidimensional impact of collectives empowerment is a transformative journey, moving from a state of powerlessness to one of empowerment. empowerment is a multidimensional concept that involves enhancing individual or collective abilities, rights and capacities to take control of one’s own life and circumstances. its conceptualisation can vary depending on the context, discipline and theoretical perspective; among these, some are more individual-centric, focusing on the enhancement of women’s abilities and the free exercise of their choices (e.g., kabeer 1999), and others more community-focused, emphasising group actions and upholding cultural norms that prioritise communal progress (e.g., budgeon 2015; kurtiş & adams 2015). social cognitive theory highlights the importance of collective efficacy in motivating groups and fostering resilience and performance (bandura 2000). collectives have emerged as catalysts for socio-economic and political change for vulnerable populations (huis et al. 2017; teasdale et al. 2023) and can have health benefits (orton et al. 2016). it is crucial to acknowledge the role of collective action facilitated by local social institutions, especially in poverty contexts in east africa, andersson and gabrielsson (2012) argue. examples of successful east-africa-based handcraft initiatives that have created better lives are neema craft in tanzania, which employs more than 300 people with disabilities (neema craft 2024), and muya in ethiopia (muya 2024). a ‘collective’ refers to a group formed around a common goal or set of goals, where members work together to achieve outcomes that would be difficult to accomplish individually. collectives can serve as platforms for mutual support, advocacy, economic cooperation and social change. by blending egalitarianism and feminine expression, contemporary challenges can be addressed (goss & heaney 2010). several models of collectives have evolved: advocacy collectives focus on social change; these groups engage in rights awareness, lobbying and advocacy. cultural collectives challenge societal norms, emphasising cultural preservation through the arts. self-help groups are grassroots entities, typically comprising 10–20 participants, which focus on helping each other through challenges, using mutual savings and borrowing, and accessing more considerable financial opportunities through uniting. cooperatives are often larger than self-help groups and involve mutual business ventures, ranging from marketing to production. they are registered and regulated entities under specific acts, making them more structured and legal. federations are formed by clustering self-help groups and cooperatives; federations amplify collective influence at broader geographical levels. enterprise collectives are centred on entrepreneurial activities; these groups enable collective production, marketing and sales. these initiatives can demonstrate, at different levels and forms, models of empowerment that focus on individual beliefs and actions (micro level), relational empowerment (meso level) and societal outcomes as markers of societal empowerment (macro level) (bronfenbrenner 1981; huis et al. 2017). a broader literature review (brody et al. 2015) found that self-help groups could positively impact participants’ economic, social and political empowerment. the timing of outcome assessments and the cultural context in which a study is conducted are crucial factors in evaluating the impact of a collective (huis et al. 2017). uhm and kim (2021) found that among caregivers managing children with special needs, revealing online social support alone had a limited role in caregiving self-efficacy and emphasised the need to prioritise collective empowerment in intervention development to strengthen self-efficacy in this population. studying disability and inclusion in resource-constrained settings requires integrating local knowledge, like the successful ‘obuntu bulamu’ intervention – a peer-to-peer support initiative rooted in local interpretations of belonging and humanity, co-created and successfully tested across ten communities in central uganda (bannink mbazzi et al. 2020; nalugya et al. 2023). likewise, brogan and dooley (2024) documented the impact of artisan cooperatives on women in sub-saharan africa for dignified and sustainable work to address gender equality and economic growth in the region. the uhuru mama collective the uhuru mama collective (umc) is a cultural collective that aims to empower caregivers of children with disabilities. learning from the ‘obuntu bulamu’ initiative in uganda (nalugya et al. 2023), this initiative was grounded in afrocentric perspectives, a viewpoint that centres on african cultural experiences and knowledge systems, emphasising the importance of african identity, heritage and empowerment (asante 1991), and tanzanian values (mayer, boness & louw 2008). the collective comprises 30 caregivers whose children are pupils at a primary school in dar es salaam. the school follows an inclusive education model, integrating children with mild disabilities into regular classrooms. meanwhile, children with more severe disabilities, such as severe intellectual disabilities and blind-deaf children, receive education in specialised classrooms but still share the schoolyard and participate in the broader school culture. like most public schools in tanzania, the school struggles with challenges such as overcrowded classrooms, outdated infrastructure, insufficient supplies and a lack of modern technology and specialised staff. the umc was established by dr. mariana makuu (the fifth author of this article), a well-connected tanzanian social worker, and dr. solfrid raknes (the first author of this article), a norwegian psychologist known for her mental health programmes across economic divides (raknes 2010a, 2010b, 2014, 2020, 2024). during an academic exchange between tanzanian and norwegian educational institutions, they observed that caregivers of children with disabilities were passively waiting in the schoolyard the whole day while their children were educated. triggered by the observation, they initiated the collective to provide healthy and income-generating activities for the caregivers while their children attended school. supported by the school’s principal, all caregivers of children with disabilities were invited to an information meeting about starting a cultural collective for caregivers. after a week, an auguration meeting occurred: on 07th july 2023, 30 female caregivers of children with disabilities at the primary school in dar es salaam started a cultural collective. they elected a chairperson, an executive secretary and a treasurer to become the leaders of the collective. they formed groups based on product types and began handcrafting items with an initial grant of 540 000 tzh (216 usd). within 6 weeks, they held their first sales exhibition and received product orders that showed them they could earn money by continuing the collaboration. dr. raknes met with the umc six times during the 8 weeks following the inaugural meeting, guiding the leaders in making informed decisions to create sustainable workplaces for caregivers. aim of the article this article aimed to explore the perceptions and experiences of caregivers of children with disabilities in dar es salaam who joined a cultural collective to gain insight into the potential impact of cultural collectives on marginalised groups in tanzania. more specifically, the objectives of the article were: to explore caregivers’ experiences of challenges and support as caregivers of children with disabilities in dar es salaam. to analyse the caregivers’ experiences of umc. to examine the short-term impact of participating in umc on the participants. methodology research design rooted in a community-based participatory research (cbpr) framework (israel et al. 2019; wallerstein et al. 2018), the study actively engaged caregivers of children with disabilities in planning, data collection and analysis. this collaboration included the researchers who facilitated the collective (first and fifth author), a researcher who is a parent of a child with disabilities herself (second author) and one of the umc participants (sixth author). the cbpr approach aimed to address power imbalances inherent in traditional research frameworks, as ocloo et al. (2021) emphasised, and to ensure that the research process was culturally sensitive and contextually relevant, thereby enhancing the depth and applicability of the findings. the study employed a sequential mixed-methods, case study design in line with yin’s (2018) criteria for addressing ‘how’ and ‘why’ questions. the case study design was chosen specifically to provide an in-depth exploration of the complex, contextual factors affecting caregivers of children with disabilities and the impact of a collective. this approach enabled each phase to serve a distinct purpose, resulting in an integrative study that capitalises on the strengths of both qualitative and quantitative methods (ivankova, creswell & stick 2006). data collection the study focused on the caretakers’ experiences during the first 8 weeks of the umc; data were collected in july and august 2023. to facilitate full participation for all participants in the study across literacy levels, assistance was provided by the collective’s secretary (sixth author) and a social worker (fifth author) for completing questionnaires. to maintain confidentiality, names were excluded from the collected questionnaire-based data. a list of names and identity numbers was compiled for internal tracking purposes. for the narratives, the secretary assisted those who wanted help with writing, to write. all data were collected in swahili, then translated to english by author 6 (the secretary in the collective), and validated by author 5 (researcher and social worker). trustworthiness, reliability and validity were carefully considered throughout the study to ensure its rigour and credibility, with each aspect systematically addressed to maintain the integrity of the cbpr process and outcomes. sample characteristics all the 30 caretakers in the collective were invited to participate in the study. they gave informed consent to participate, and 28 completed the questionnaires (n = 28). the average age of the participants was 40 years, and all were women. all were caretakers of a child with a disability, and most were the biological mother of that child. the participants reported a daily income for their household of between 0 and 10 000 tzh (equivalent to 3.8 usd). this range reflects the economic reality of many tanzanian lower-income households. given tanzania’s per capita income and the widespread economic challenges, this income range indicates that many of the participants in our sample fall below the poverty line. all were unemployed. at the same time, 59% were their family’s primary earners. most participants (68%) had 2–3 children, some had 1 child only and some had 4–5 children. education varied, with 16 attending primary school for 7 years, six for 4 years, two for 2 years, one for completing secondary school, one for 1 year of university and one never attending school. a total of 64% self-reported their literacy skills in swahili (which was explained to include writing and reading) to be quite good and 14% reported low swahili literacy skills. a total of 11% reported having quite good english skills (which was explained to focus on oral communication), while 60% reported having no english skills. the group represented a diverse tribal background. most lived less than two hours’ travel from the school. a total of 26% of the participants reported not feeling appreciated in the community. table 1 provides an overview of the demographic and socioeconomic characteristics of the participants in more detail. table 1: sample characteristics and descriptive statistics. first phase: questionnaires the paper-and-pen completed questionnaire-based data were collected during a workday at the collective. the questionnaire designed for this study was structured into seven content areas: demographics, family, economy, employment, support, needs and concerns and motivations for joining the collective. it concluded with an open-ended segment for additional comments. for more details, see appendix 1: questionnaire used for this study. furthermore, the level of depression was assessed by using a standardised and normed scale validated for use among adults in tanzania (fawzi et al. 2019), patient health questionnaire-9 (phq-9) (kroenke, spitzer & williams 2001). the phq-9 is a nine-item instrument where respondents are asked to indicate how frequently they have been bothered by specific problems over the past two weeks, with answer choices ranging from ‘not at all’ (scored as 0) to ‘nearly every day’ (scored as 3). the sum of scores from all nine questions results in a total score ranging from 0 to 27. this total score helps to classify depression severity: 1–4 indicates minimal depression, 5–9 indicates mild depression, 10–14 indicates moderate depression, 15–19 indicates moderately severe depression and a score of 20–27 indicates severe depression. second phase: narratives, products and observations this phase consisted of three main components: participants’ narratives, their handcrafted products accompanied by stories they wrote to accompany them and observations by the researchers who met the umc participants during and directly after the sales exhibition. narratives all participants were invited to share stories about themselves and their children, explaining why they joined the collective and their backgrounds, struggles and hopes. nineteen narratives, ranging from a half-page to three pages, were received and analysed. handcrafted products and associated stories the handcrafted products included batik dresses, woven wall decorations, handbags and mats woven in coconut leaves (mkeka). alongside these handmade products, stories were written by the participants about the products and what they represented. observations the psychologist and social worker conducted naturalistic observations of participants during their meetings with the collective and critical activities such as product planning, hand-crafting and sales. this naturalistic observational approach (mehl & conner 2012) aimed to capture authentic behaviours, interactions, emotions and insights into the caretakers’ genuine reactions and dynamics. by observing while working together, the researchers could document the participants’ experiences in a real-world context without the influence of structured guides or predefined criteria. this method aligns with central community-based participatory research principles (wallerstein et al. 2018), emphasising the importance of understanding participants’ lived experiences within their natural environment. data analyses analysis of quantitative data continuous variables’ measures of central tendency (mean) and dispersion (standard deviation, range) were calculated. the phq-9 scores were summed and analysed, and descriptive statistics were presented. frequent distributions and percentages were explored for categorical variables. analysis of qualitative data the narratives and the product stories were analysed utilising thematic analysis in line with braun and clark’s (2006) six-step method: (1) familiarising oneself with the data, (2) generating initial codes, (3) searching for themes, (4) reviewing themes, (5) defining and naming themes and (6) writing the article. the first author analysed the qualitative data and performed detailed thematic analyses. this preliminary analysis was then reviewed, refined and enhanced by the second author, who provided unique insights informed by her own experience as a parent of a child with disabilities and an experienced researcher on the theme of disabilities. the fifth author (tanzanian researcher and social worker) and the sixth author (umc secretary) then revised and validated the analysis, enhancing the findings’ reliability and cultural sensitivity. ethical considerations during the study’s planning phase, the three leaders of the umc – the treasurer, secretary and chairperson – were eager to participate in the research, and their enthusiasm was an initiative to develop this study. after sharing information about basic ethical research principles in studies on vulnerable human beings, ethical considerations were thoroughly discussed with umc leaders. participation was voluntary and the participants gave oral informed consent. withdrawal from the study participation at any time would have had no consequences for any participants. also, participants were free to skip any uncomfortable questions. the research was conducted as part of a collaboration governed by a memorandum of understanding (mou) between the ministry of education, science and technology of the government of the united republic of tanzania, molde university college and western norway university of applied science, valid until 18 november 2027. specific research clearance for this study was approved under reference no: mou 18.11.22–18.11.27. results questionnaire-based results, phase 1, from when they entered uhuru mama collective caregivers’ motivation to join the collective women gave four reasons for joining the collective, listing in decreasing order of frequency their needs and ideas on what is needed for better lives: economics, education and skills, achievement and receiving help. table 2 gives an overview of these themes and the associated sub-themes of concern, associated citations and how many caregivers reported each type of motivation. table 2: caregivers’ motivations for joining the collective. caregivers’ concerns four main themes were revealed, each with its sub-themes: (1) behavioural and social concerns for the child, (2) burden of care, (3) services for the child in the future and (4) economics (see table 3 for sub-themes, quotes, and frequency analyses). table 3: maternal concerns in caring for children with special needs. institutional support and communication technology access when questioned about non-governmental organisation (ngo) support, none of the participants reported receiving any. most participants used ‘normal’ phones; 1/3 used smartphones and one reported no access to the phone. most participants with smartphones used multiple social media accounts, including facebook (fb), instagram, whatsapp, tiktok and youtube. only a few indicated email usage. depression a total of 62.5% of the participants (n = 24) who completed phq-9 were found to be struggling with depression. the mean score for depression symptoms was 7.41 (standard deviation [s.d.] = 6.07) (table 1), significantly elevated compared to average values. as shown in figure 1, 37.5% showed no sign of depression, 37.5% showed signs of mild depression, 12.5% showed signs of moderate depression and 12.5% showed signs of severe depression, while none showed signs of very severe depression. figure 1: distribution of depression levels at the beginning of the uhuru mama collective. results based on narratives, handcrafted products and observations, phase 2 narratives from the narratives about caregivers and their children, six key themes were identified: (1) the child’s condition, (2) the child’s strengths and struggles, (3) family dynamics, (4) education of the child, (5) financial struggles and (6) future aspirations and community support. the child’s condition: significant health challenges at birth, including incomplete organs, neonatal pneumonia, jaundice and weight issues, were described in detail. these early health challenges set the stage for continued medical intervention and concerns about developmental milestones. ‘from the minute he was born, we knew we had a long road ahead. the neonatal icu became our second home’. most of the narratives indicated some form of developmental delay diagnosed in early childhood, including speech, mobility and cognitive development issues. this led to varying forms of intervention, ranging from physical and speech therapy to specialised medical surgeries, such as eye surgeries for vision impairment. ‘we were so excited for her first steps, but they came much later than expected. it was a celebration but also a reminder’. the child’s strengths and struggles: the caregivers noticed talents in their children, such as good mathematics, music or problem-solving skills. these strengths were focal points for family pride and hope for the future. ‘it is amazing; he can solve complex math problems but cannot tie his shoes. we focus on the math’. although many children struggled with social interaction because of their conditions, strong bonds were often formed within the immediate family. caregivers found that these bonds, although fulfilling, sometimes create challenges when the primary caregiver is absent, as others may struggle to understand the child’s unique communication needs. ‘he is not a “social butterfly”, but with us, he is a chatterbox. it is like he speaks his beautiful language’. family dynamics: family support was described in many of the narratives: ‘even on the worst days, her smile lights up the room. and somehow, we get through it as a family’. however, many were single caregivers and had become so after giving birth to a child with disabilities. the child’s father was absent in 15 of the 19 stories, either as not mentioned at all or as mentioned as a father who has left: ‘the challenges i face in raising my child include the fact that his father abandoned us and left the child in my care. i struggle economically to ensure i meet his essential needs in life, including medical care, clothing, bedding, food, and other safety-related care’. education: many participants reported experiencing rejection from multiple schools upon disclosing their child’s disability. this resulted in a quest to find the right educational environment for their child, which proved to be an emotional and logistical challenge for the family. ‘we tried three schools in two years. they kept saying they could not meet her “special” needs’. financial struggles: the financial strain of providing for a child with special needs was a common theme in most narratives. ‘i do not know how we are making ends meet’. future aspirations and community support: a recurring aspiration among the caregivers was to help their children and other families facing similar challenges. ‘i want to ensure no parent feels as lost as i did’. handcrafted products and associated stories each product embodied these caregivers’ challenges, coping strategies and hopes for their children. the products and the stories communicated the caregivers’ difficulties and joys. they offered a multidimensional understanding of what it meant to them to be a mother to a child with a disability, stories of hope, unity and how the collective gives support and new hope (see table 4). table 4: artistry and advocacy: products and their stories. observations at the establishing meeting, a song came up in the group that all the caregivers sang together while smiling and moving to the rhythm. it was a swahili activism song and goes like this when translated into english: ‘mothers are the ones expected to bring about change in their families. we are the ones who can bring about change in our society. mothers are expected to bring about change in our nation’. the caregivers repeated this song many times and in various settings, with improvised changes in the words used, including fathers, teachers, social workers and researchers. the song usually brought smiles and fostered a strong sense of togetherness. the products were well-received at the sales exhibition, which made one of the caretakers say, with tears in her eyes: ‘this collective, all of this… it makes me feel like coming up from a deep, dark hole’. the caregivers were happy and proud of their products and the money earned. altogether, they sold items for 1 605 000 tzh (643 usd) and received a big order that would provide them with another 6 000 000 tzh (2400 usd) if completed. this encouraged the group to continue to meet, learn new skills, make new products for sale and actively start looking for opportunities, raising awareness about children with disabilities through their products and stories. the caregivers seemed vitalised through what they said, the tone in their voices, their body language, how they sang and the energy they put into working at the collective. discussion this article explored the experiences of caregivers of children with disabilities who started a cultural collective in dar es salaam and aimed to gain insight into the potential impact of such collectives in the short term. several theoretical perspectives resonated with our findings, specifically hanna arendt’s concepts of labour, work and action (2018), the self-determination theory (sdt) framework of competence, autonomy and relatedness (ryan & deci 2000) and scarcity theory (mullainathan & shafir, 2013). challenges faced and support needed the fact that 62.5% struggled with depression at the time they started the collective emphasises the need for mental health interventions. our findings correspond with previous research showing a heightened prevalence of depression among caregivers of children with disabilities (chen et al. 2023; dawkins et al. 2021; demšar & bakracevic 2023; greenwood et al. 2022). these findings underscore the psychological toll of caregiving and highlight the importance of addressing mental health needs within this population. the caregivers’ reasons for joining the collective were economic, education and skills, achievement and receiving help; these are reasons that reflect the multidimensional needs and aspirations of caregivers caring for children with disabilities, emphasising the importance of holistic support initiatives. the most frequent reason for joining was economic, which aligns with the broader socioeconomic context in tanzania, where economic opportunities for marginalised groups, such as caregivers of children with disabilities, are often limited (world bank 2022). the fact that the caregivers focus on immediate financial needs aligns with de bruijn and antonides (2022) findings, and the focus on economic independence resonates with the autonomy concept in sdt (ryan & deci 2000). analysis revealed four main themes of concern among caregivers, including behavioural and social problems, the burden of care, future services for the child and economic worries. worries like ‘he is bullied and abused’ and ‘he frequently bites’ witness the caregivers’ deep empathy and awareness of the social challenges their children might face and are pained by the thought of their children being hurt, hurting others or being marginalised. our results align with mkabile et al. (2021) and sæbjørnsen et al. (2023), emphasising the societal challenges african caregivers of children with disabilities face. these findings underscore the complex challenges faced by caregivers in caring for children with disabilities and highlight the need for multifaceted support. the lack of institutional support reported by participants highlights a gap in external assistance for caregivers of children with disabilities within the community. the finding is in line with previous research (knifton & inglis 2020; mkabile et al. 2021; sæbjørnsen et al. 2023, unicef tanzania 2021; unicef 2023; world bank 2022, 2023). the lack of support underscores the importance of initiatives such as the umc in providing much-needed support and resources essential to protect children with disabilities and their families. the prevalence of smartphone usage among one-third of the participants suggests an opportunity for leveraging digital platforms to enhance communication and access to support services and, at the same time, raises concerns about digital equity and the potential exclusion of those with limited access to technology in line with findings by ronda,vasloo and grainne (2018). addressing these disparities will potentially strengthen inclusive participation and support within the collective. love and laborious caregiving qualitative analysis of narratives and observations revealed critical themes related to the challenges of caregivers caring for children with disabilities and what umc meant for them. the handcrafted products created by caregivers served as powerful symbols of resilience, love and advocacy, offering insights into the participants’ lived experiences and aspirations for their children’s future. the written narratives witnessed caregivers who, despite many challenges, were taking control of their lives, seeking the best for their children and navigating complex sociocultural terrains. arendt’s notion of labour is evident when the caregivers describe their and their children’s conditions. labour, as the cyclical process of sustaining life, is reflected in the caregivers’ ongoing efforts to address their children’s health conditions and education. it describes how they support their children to eat, dress and walk and have been carrying them for many years. also, the focus on education for their child witnesses focuses on competency, echoing the sdt theory. by emphasising their children’s abilities, caregivers foster a sense of capability and self-worth in their children and themselves as caregivers. previous research has found that caregivers with scarce financial resources often have concerns about being able to control or defend their mothering (elliott, powell & brenton 2015) and tend to attribute ‘poor’ parenting behaviours to themselves (cooper 2021). contrary to this, what is more evident in these caregivers’ narratives is the fighting spirit of the caregivers, the strength of caregivers who advocate for their children’s rights. despite challenges, caregivers in the collective seem better positioned than those depicted in other african studies (greenwood et al. 2022; manono & claquin-johnson 2023). in contrast to likumbo et al. (2021), who described how common it is to hide children with disabilities, these caregivers accompany their children to school and advocate for their rights. the caregivers have likely transitioned from wanting to shield their children with disabilities from the world to their current position of acceptance and advocacy and can find meaning in using their rough experiences to influence and create change among peers and increase awareness about disabilities in the broader community (szlamka et al. 2022). creating messages arguing for the value of their children preparing for and participating in the sales exhibition was a platform for these caregivers to advocate for their children’s rights and values. during the first 2 months of the collective, the caregivers argued that their imperfect children, who may never become independent adults, were still precious, and used their beautiful handcrafted bowls and mats to bring these messages. a mother’s relationship with her child with disabilities and a care-demanding child can be contradictory and complex (schmidt et al. 2023). however, the caregivers’ demonstrations of love can contribute to a ‘legitimisation’ of love for a child with disabilities so that caregivers who still hide away their child out of fear and shame can also gather the courage to accept, support integration, speak up and fight for their child. consistent with research highlighting the transformative power of women’s collectives in fostering socio-economic and political change (huis et al. 2017; teasdale et al. 2023), the activities of the collective served as powerful tools of empowerment and advocacy. their communal activities resonate with the community-focused model of empowerment, which emphasises group actions and challenging societal norms (budgeon 2015; kurtiş & adams 2015). caregivers on their way up the observations made by the social worker and the psychologist witnessed the fact that umc brought caregivers together around their challenges, the collective helped them to refocus on their skills, made them feel part of a group, less isolated and more everyday related and provided opportunities to develop their skills and competence and constructively use their energy and abilities to earn money. a metaphor used by a mother in the collective, ‘this collective, all of this… it makes me feel like i am coming up from a deep, dark hole’, told about a journey from poverty, pain and ignorance to knowledge, hope and relief. such a journey can be about a transition from experiencing long-term powerlessness, poverty, being overwhelmed by labour, depression and poor prospects to feeling less hopeless and more confident, using their skills to work, earn some money and increase their economic independence, and participate with their voices and handcrafting skills advocating for change. the transformation resonates with the sdt concepts of autonomy, competence and relatedness and arendt’s most central concepts. the transformative spirit of the collective was echoed in the swahili song the uhuru mamas often sang, emphasising the power and expectation to initiate change within their family and society. singing is expected in a country where propaganda songs have a long tradition and are still active as critical agents for change (waters & philhour 2019). the shift of roles from labour to work and action parallels studies in other contexts. the benefits of interventions for parents of children with disabilities of role transition from ‘caregivers’ to ‘educators’ to ‘right defenders’ were recently described in research on interventions for mothers of children with autism in china (wang et al. 2022). furthermore, the benefits and importance of participating in the community and using peer support initiatives also resonate with recent research on what is perceived as needed for providing change for children with disabilities in malawi (greenwood et al. 2022). short-term impact the umc led to a better economy for the participants in the first 2 months of the collective: normally they did not earn anything while waiting for their children at school, but now they earned a little. importantly, given the economic challenges associated with living and caring for children with disabilities when living in extreme poverty, initiatives that empower these caregivers economically, such as skill development and micro-financing to start a business, can be crucial for caregivers of children with disabilities and their families. furthermore, the collective seemed to lead to a sense of more support, agency and increased well-being for the participants, as well as less shame. as stigma and superstitions associated with disabilities remain strong in the tanzanian society (mkabile et al. 2021), community-based initiatives to change perceptions about disabilities are needed. grassroots initiatives, like the umc, can serve as powerful platforms for caregivers to advocate for their children’s rights and societal acceptance. in tanzania, where research emerging from local knowledge has substantially developed, it is essential to ensure social work curricula incorporate locally relevant practices, theories and understandings to serve the needs of communities better (nilsen et al. 2023). interventions that resonate with local culture and values are likely to be more effective and sustainable than interventions focusing on the individual. limitations and strengths small sample size, data collected from caregivers only, context specificity and the short intervention time, are limitations of the study. furthermore, depression was assessed with a self-completed questionnaire only, and there was no quantitative post-test of depression. the potential for inherent biases, such as confirmation and cultural biases from the researchers, could have influenced the interpretation of data and findings, emphasising the need for caution in generalising the results. future studies should delve deeper and broaden the research spectrum to validate and expand upon these findings. longitudinal studies with several assessment points are needed to learn more about the impact of collectives on caregivers of children with disabilities over time. however, examining the perceptions of caregivers of children with disabilities who had joined a newly created collective designed to support them, using a cbpr approach, ensured that the research was deeply rooted in the lived experiences of the community, enhancing the relevance of the findings. the likelihood of meaningful and actionable outcomes was increased by actively involving community members throughout the research process. the mixed-methods design also provided a comprehensive assessment of the collective’s impact, capturing both measurable changes in financial and psychological well-being and the nuanced personal experiences of the participants, offering valuable insights into understudied populations such as those in urban east africa. conclusion this study contributed to international discourses and frameworks around the rights and well-being of children with disabilities and their families. it highlights the urgent need for nuanced, culturally attuned, multi-dimensional interventions in an east african context. innovation is needed to increase access to relevant and impactful support and services for children with disabilities and their families. by weaving together our findings with previous research and empowerment perspectives, hannah arendt’s concepts of labour, work and action, and the self-determination theory, we argue that this study has deepened the insights into the psychological and social intricacies that caregivers of children with disabilities face in dar es salaam. hopefully, this study will stimulate more research on the impact of collectives on caretakers of children with disabilities. in line with previous research, this study highlights the significance of economic empowerment as a means to alleviate stressors (hohlfeld et al. 2018; huis et al. 2017). we hope this knowledge informs more impactful, accessible psychosocial interventions to assist caregivers of children with disabilities in tanzania and comparable settings. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.r. led questionnaire development, data collection and analysis. s.n.s. secured funding for the project, obtained research permits, assisted with questionnaire design and co-authored the article. h.c.a. and t.m.n.b. assisted in questionnaire development and writing. m.j.m. partnered locally in tanzania, assisted with data collection, and translations, ensured cultural sensitivity. c.y. collected narratives in swahili and validated results. s.h. contributed to writing with a special focus on methodology and theory. funding information this research 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educational background? 3. how well can you read and write swahili? a) not at all b) a little c) quite well d) fluently 4. how well can you speak english? a) not at all b) a little c) quite well d) fluently 5. what is your tribe? 6. how far away from the school do you live, and in what neighbourhood? theme 2: your family 7. who and how many are living in your household? 8. how many children do you have, and what are their ages? 9. what child(ren) has/has a disability, and what is their disability? 10. what thoughts and feelings did you get when you learned that your child has a disability? 11. how has your family reacted to the fact that you have a child with disability? theme 3: economy 12. are you the primary breadwinner of your family? a) yes b) no 13. your household income per day? theme 4: employment and work-related challenges 14. are you currently employed, and if so, what type of work do you do? 15. have you experienced any challenges or changes in your work because of being a mother of a child with a disability? theme 5: support systems and services 16. do you receive any support from government or non-government organisations? a) yes b) no 17. are there any areas where you feel your child is not receiving adequate support or services? theme 6: needs and concerns 18. what kind of support or assistance do you feel would be most beneficial to you and your child? 19. what are your main concerns and challenges in raising your child with disability? theme 7: social support and networks 20. are you connected to any support groups or community organisations related to disability care? a) no b) yes. if yes, how and what is your role there? 21. do you feel appreciated by your community? a) yes, most of the time b) sometimes c) no, very rarely. 22. i have a… a) smartphone b) normal phone c) i don’t have a phone 23. i have an account and can use it on… a) facebook b) instagram c) tiktok d) whatsapp e) mpesa f) other (specify)………………… theme 8: joining this woman’s collective complete the following sentence: for me the most important thing i hope to get from joining this women’s collective is…………. anything else you would like to add? abstract introduction research methods and design results shared themes to both individuals with acquired brain injuries and their significant others themes of participants with an acquired brain injury themes of significant others discussion conclusion acknowledgements references about the author(s) kirsten j. talbot department of speech-language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa esedra krüger department of speech-language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa bhavani s. pillay department of speech-language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa citation talbot, k.j., krüger, e. & pillay, b.s., 2023, ‘experiences of acquired brain injury one-month post-discharge from acute hospitalisation’, african journal of disability 12(0), a1037. https://doi.org/10.4102/ajod.v12i0.1037 original research experiences of acquired brain injury one-month post-discharge from acute hospitalisation kirsten j. talbot, esedra krüger, bhavani s. pillay received: 09 mar. 2022; accepted: 12 dec. 2022; published: 28 feb. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: healthcare professionals may have a preconceived idea about life after an acquired brain injury (abi). understanding lived experiences of individuals with abi and their significant others, post-hospitalisation, may improve communication between healthcare professionals and individuals directly influenced by the abi. objective: to describe perceived experiences of individuals with abi, and their significant others, regarding rehabilitation services and returning to daily activities, one-month post-discharge from acute hospitalisation. method: semi-structured interviews, via an online platform, expanded on the experiences of six dyads (individuals with an abi and their significant others). data were thematically analysed. results: six main themes emerged that best described participants’ experiences; two of which were shared between individuals with abi and their significant others (so). individuals with an abi acknowledged recovery as their priority and highlighted the importance of patience. the need for counselling and additional support from healthcare professionals and peers arose. the so expressed a need for written information, improved communication from healthcare professionals, and education regarding the implications of an abi. the coronavirus disease 2019 (covid-19) pandemic negatively influenced all participants’ overall experiences, mainly because of termination of visiting hours. psychosocial intervention would have been beneficial to all participants. faith influenced most participants’ attitudes towards recovery and adapting post-abi. conclusion: most participants accepted their new reality but required additional support to cope emotionally. individuals with an abi would benefit from opportunities to share experiences with and learn from others in a similar situation. streamlined services and improved communication may alleviate anxiety among families during this crucial transitional period. contribution: this article provides valuable information on the perspectives and experiences of individuals with abi and their significant others during the transition from acute hospitalisation. the findings can assist with the continuity of care, integrative health and supportive strategies during the transition period post-abi. keywords: acquired brain injury; experiences; acute care; post-hospitalisation; significant others; qualitative research; semi-structured interview. introduction acquired brain injuries (abi) include several conditions, most commonly, strokes and traumatic brain injuries (tbis), which are local and global health concerns (ntsiea 2019; menon & bryant 2019). strokes affect roughly 240 south africans daily and is the cause of 25 000 deaths annually (taylor & ntusi 2019; the heart and stroke foundation south africa 2020). globally, tbis are estimated to affect 69 million individuals annually, with the most proportion (56%) of tbi’s consequent to road traffic collisions occurring in south africa and south-east asia (dewan et al. 2018). an abi is diverse in consequence and severity, and can influence one’s motor, sensory and/or communicative functioning, hindering participation in daily activities (chembeni & nkomo 2017; webster, taylor & balchin 2015). individuals with an abi are treated by a healthcare team, in private and public care settings, to assist with education and understanding of the abi within the international classification of functioning, disability and health framework (icf) (degeneffe 2015; ntsiea 2019). the significant other (so), such as a family member, close relative or caregiver, who cares for the individual with an abi is unprepared and often feels ill-equipped to meet the resultant changes that occur in their loved one after an abi (degeneffe 2015; whitehead & baalbergen 2019). individuals with abi are likely to experience difficulties in all areas of the icf, especially interaction between themselves and their environment (kusambiza-kiingi, maleka & ntsiea 2017; ntsiea 2019). difficulties seen during the early phase of recovery may include loss of memory, loss of physical functioning and difficulty verbally communicating, hindering active participation in daily activities (kusambiza kiingi et al. 2017; stiekema et al. 2020). experiences within the first week until the first month post-abi are critical because of the transition periods from hospitalisation, rehabilitation, and reintegration into the community (ntsiea 2019). this includes access to information regarding education about an abi, caregiver education and discharge readiness before discharge from acute care and during the ongoing rehabilitation process (piccenna et al. 2016; stiekema et al. 2020). providing information to individuals with abi and their family is important; however, communication between healthcare professionals (hcp) and family members has been recorded as ‘inadequate’, resulting in poor understanding and implementation of health information (soeker & ganie 2019). in cases where sos have received information about an abi, they report pamphlets as difficult to understand and are hesitant to ask for further explanations (li et al. 2020; webster et al. 2015). there is a significant need for hcp to better understand the social context of individuals with abi while in the acute care setting and during the transition to their home environment with their so (legg & penn 2013). individuals with abi experience a loss of ‘pre-injury self’ which may involve a loss of independence, and loss of roles within the household (chembeni & nkomo 2017; who 2018). upon discharge, individuals with abi are likely to have inadequate activity and participation in their home and community because of physical or emotional limitations (kusambiza-kiingi et al. 2017). complex emotions are often exacerbated as families can find it difficult to accept a new reality (abrahamson et al. 2017; piccenna et al. 2016; villa, causer & riley 2020). loss of friendships are likely to be experienced upon returning home as individuals with abi express difficulty communicating with others (chembeni & nkomo 2017). this often leads to avoidance of familiar activities despite the need to participate within the home and community (villa et al. 2020; webster et al. 2015). social disconnect is another common experience as individuals with abi may feel a loss of social status and experience limitations within their community (soeker & ganie 2019; villa et al. 2020). strain can be worsened in families when the abi leads to communication difficulties (ntsiea 2019). families are often the most important support system while individuals with abi recover and develop a new sense of self, reintegrating into home and community settings (chembeni & nkomo 2017; villa et al. 2020; webster et al. 2015). understanding the lived experiences and emotional well-being in relation to the impact an abi has on the individual and their so has been continuously highlighted in research (andersson et al. 2016; harvey 2018). the need for quality information, communication and collaboration are emphasised as factors that reportedly would have improved an individual’s overall experience post-abi (andersson et al. 2016; harvey 2018). experiences within the first month post-abi are important because of various stages of rehabilitation to reinte-gration into communities (abrahamson et al. 2017; ntsiea 2019). two of the highest-ranked needs during hospitali-sation involve clear explanations of the abi and discussing realistic outcomes about recovery (mauss-clum & ryan 1981). these needs continue to align with recent findings where individuals with abi and sos experience similar difficulties regarding the impact an abi has on a family unit (chembeni & nkomo 2017; holloway, orr & clark-wilson 2019; masuku et al. 2018; villa et al. 2020). the average stay in a south african tertiary level hospital is 6 days, and individuals with abi are often discharged home too soon (kusambiza kiingi et al. 2017; mudzi et al. 2012). not all south africans are covered by private medical schemes and therefore do not have easy access to rehabilitation facilities (joosub 2019). in the public sector, few individuals with abi benefit from post-acute rehabilitation because of an overburdened healthcare system and inadequate number of hcp to manage this caseload, limiting opportunities for them to access, adapt and learn about their recently acquired brain injury (abrahamson et al. 2017; joosub 2019; taylor & ntusi 2019). transitioning into a home environment following abi in an upper-middle income country, such as south africa, has not been explored and further research is warranted. recent studies show that sos experience emotional and physical strain while caring for individuals with abi (abrahamson et al. 2017, masuku et al. 2018, webster et al. 2015). additionally, sos often experience a lack of support from family members, likely exacerbating feelings of uncertainty, loneliness, and increased burden of care (chembeni & nkomo 2017; webster et al. 2015.) education and necessary referrals, while in acute care, may support sos of individuals with abi during the transition period (harvey 2018; holloway et al. 2019). previous studies from upper-middle income countries found communities and hcp may benefit from addressing the loss of emotional and physical independence post abi (bellon et al. 2015; legg & penn 2013). home-based services are available in such cases, but referral pathways and implementation are not always adequate (ntsiea 2019). in addition to home-based services, all families should have adequate access to information before discharge from acute care and while considering ongoing rehabilitation needs (picenna et al. 2016). another challenge within the public sector is premature discharge of individuals with abi without adequate information about their recovery or available resources (liang et al. 2017). this may result in complete dependence on family members (ntsiea 2019). research of this nature, conducted qualitatively, has proven the importance of examining experiences post-abi (abrahamson et al. 2017; masuku, mophosho & tshabalala 2018; souchon et al. 2020). there are currently a few studies that focus on the transitioning periods from acute care to the community setting in upper-middle income countries, with low-income settings, such as south africa (kusambiza-kiingi et al. 2017; walker, schlebusch & gaede 2021; webster et al. 2015). it is important that hcp base their decisions on real needs that are relative to the setting. focusing on the current lived experiences of individuals with abi and their sos may highlight the importance of person-centered care and allow an easier transition to an adjusted way of living in future scenarios (andersson et al. 2016; harvey 2018). the aim of this study was to describe perceived experiences of individuals with abi, and their sos one-month post-discharge from acute hospitalisation. research methods and design the study aimed to achieve a deeper understanding of the direct perceptions or daily experiences of individuals with an abi and their so (leedy & ormrod 2015). describing individuals’ experiences tied in with the theory of realism, which claims there can be different realities that exist based on the same situation, its meaning, and interpretations held by people (creswell et al. 2016; rahman 2017). individuals’ contexts and experiences may influence their perceptions and beliefs (maxwell 2012; rahman 2017). this theory was appropriate for this study as it allowed for a better understanding of the relationship between individuals’ perspectives and their actual situations (leedy & ormrod 2015; maxwell 2012). research design and data collection the twelve participants of this study were identified in two private, acute care facilities through the referral of the private speech-language therapist (slt) practice where the first author (k.t.) was employed. these two hospitals are in a south african city and offer services to outlying, smaller communities who do not have access to private hospitals in their hometowns. participants were interviewed one-month post-discharge from acute hospitalisation, focusing on experiences during hospitalisation and post-discharge. informed consent was obtained by the first author (k.t.) during acute admission. where this was not possible, the author emailed the necessary documents to the treating slt at the rehabilitation facility. two sos who did not live nearby were also emailed consent and demographic forms for completion. purposive sampling was used to recruit six dyads of participants from each acute care facility (leedy & ormrod 2015). the first author made use of videoconferencing via whatsapp video call as the primary medium to conduct a once-off semi-structured interview. the interview schedule adapted from abrahamson and colleagues (2017) was used to probe detailed reasoning, making use of the real-time video, and audio feedback of the videoconference platform (leedy & ormrod 2015; nehls, smith & schneider 2015). minor adjustments were made to the previously published interview schedule to include questions about discharge from hospital and transfers to step-down and rehabilitation facilities (bellon, kelly & fisher 2021; liang et al. 2017; whitehead & baalbergen 2019). questions were also adapted to be open-ended and original questions were split into different parts to obtain more information from the participants (leedy & ormrod 2015; schonlau et al. 2019). a desktop computer (intel core i7-8700k cpu @ 3.70ghz, 32gb ram), apple ipad pro (3rd generation, 12.9”, 256gb, wi-fi) and webcam (trust spot light pro webcam) were used to conduct and audio-record interviews. the interviews were then uploaded to a website (otter.ai n.d.) for automatic transcription. transcripts were manually edited by the first author [kjt]. communication supports were not used during interviews as all participants could effectively verbalise opinions without external support. the interviews lasted an average of 30 minutes. one participant showed signs of fatigue as the first author made use of most of the guiding questions for more detailed responses. participants participants were only included once a diagnostic ct (computerised tomography) or mri (magnetic resonance imagery) scan confirmed the presence of a single abi and subsequent referral to slt services during acute hospitalisation. upon administering the cognitive-linguistic quick test (clqt) as a routine assessment, individuals with abi who scored between 2.5 – 4.0 on their overall composite severity rating (csr) and ‘mild’ or ‘within normal limits’ on their language abilities, were considered for inclusion (box 1). all participants had to be older than 18 years and have conversational english. once the individual with abi was invited to participate, their nominated so was also invited to take part, forming a dyad. the sos were only included if they were primarily responsible for caring for, and lived with or near, the individual with abi (box 2). participants were recruited between february and july 2021. a pilot study was conducted with one dyad, but these data were not included in the final sample because of changes that were made to the interview schedule subsequent to the pilot study. box 1: inclusion and exclusion criteria for participants with an abi. box 2: inclusion and exclusion criteria for so of the individual with an abi. the six participants with abi were aged between 19-57 years old, and the sos were 42-48 years of age. five participants were male and seven were female (table 1). the six sos were directly related to the individuals with abi and had familial roles of daughter, wife, husband, mother and sister. the youngest participant was a student who could not continue with her studies, and one participant opted for early retirement, aged 47 years old. as a result of their abi, the remaining four participants required assistance returning to work. ten participants were permanently employed. in addition to the sos’ own employment, there were demands to assist in running their family members’ business post-abi. table 1 further elaborates on participants’ employment. participants’ home languages included afrikaans, northern sotho, and southern sotho. none of the participants spoke english as their primary home-language but used it conversationally. interview questions were therefore repeated when necessary, simplified to use layman’s terms and the first author translated to obtain the appropriate english word from afrikaans participants, when asked. none of the individuals with abi could return to driving after their injuries. table 1: participant description – individuals with abi (n = 6) and their so (n = 6). data analysis data were analysed using inductive thematic analysis to allow for data to be coded without placing results into a pre-existing coding framework (braun & clarke 2013). thematic analysis aimed to examine participants’ experiences and perspectives in a direct manner, without assuming any other underlying meanings (braun & clarke 2013; leedy & ormrod 2015). the first author read through and manually corrected the transcriptions against the audio recordings. thematic analysis followed steps outlined by braun and clarke (2013). the first author initially read through the transcripts to identify common experiences, which was a key phase when interpreting the qualitative data set (bird 2005). experiences focused on preparation for discharge, services received during admission, adapting from acute care and transitioning back to social and home environments, one-month post-discharge from acute hospitalisation. the second phase involved using atlas.ti 9 software (scientific software development gmbh 2020) to establish codes and subsequently highlight similarities and differences between the data sets of individuals with abi and their sos (braun & clarke 2013). the common experiences were highlighted and grouped together. through revisiting the raw data and debriefing with co-authors, consensus on themes was reached in phase three (braun & clarke 2013; elliot 2018). sub-themes were created where similar ideas could be grouped and discussed together. discussion among the three authors contributed to credibility of the data and provided alternative suggestions where necessary (connelly 2016; leedy & ormrod 2015). this ensured that the interpretation and development of themes reflected the participants’ personal experiences and related to the aim of the study. ethical considerations ethical clearance to conduct this study was obtained from the university of pretoria faculty of humanities research ethics committee (no. hum039/0920). results six main themes were agreed upon after analysing the personal experiences of the individuals with abi as well as their respective sos (figure 1). between the two groups, two themes were shared. one of the shared themes developed three sub-themes. fictitious names were used for participants and hospitals. figure 1: themes that emerged based on participants’ personal experiences. interviews took place during the covid-19 pandemic, exacerbating existing stresses surrounding the onset of an abi. the pandemic negatively influenced all participants’ well-being because of the changes in hospital regulations and protocols. all dyads commented on the difficulties coping while not being able to visit family and see familiar faces regularly within the hospital and rehabilitation settings. the resultant themes discussed are thus reflective of the circumstances surrounding the covid-19 pandemic. shared themes to both individuals with acquired brain injuries and their significant others everything has changed the first shared theme discusses experiences of the individuals with abi adapting to a new reality, losing independence, and as a result, their sos now taking on the role of caregiver. all individuals with abi acknowledged changes to their physical abilities and anticipated changes to participation in everyday activities. p04 stated: “my whole life is going to change when i’m going back home.” although the mentioned consequences of the abis were mainly physical, emotional consequences were also perceived. emotional well-being was important to p03 as conveyed in this statement: “emotionally i want to be okay.” contrastingly, two of the six individuals with abi felt expectations from their sos and those around them: ‘everybody just expects me to be okay.’ (p03, age 19, female) sos had difficulty adjusting to the new role as caregiver towards their family member with abi and expressed a clear view on their increased burden of care and consequent emotions. so01 suggested the following as a result of her experience: ‘don’t take everything on one person because that’s a huge burden to carry.’ (so01, age 42, female) emotional challenges around coping with the changes post-abi in the loved ones of the six sos that were interviewed were highlighted: ‘well i had to get prescription drugs to keep me calm… taking it [effects of an abi] like literally day by day. ja, that’s how you do it. you [so] go day by day.’ (so01, age 42, female) in addition to emotional challenges, individuals with abi were disheartened that they could not return to their usual social activities such as singing lessons, golf and karate. three individuals with abi expressed concerns regarding their communication, ability to focus, and memory: ‘i cannot explain myself sometimes … just difficult for me to speak the words i’m used to speaking you know. even with english, afrikaans, it’s the same.’ (p01, age 56, male) ‘i struggled so much to concentrate. to focus.’ (p03, age 19, female) these difficulties directly influenced their experience within the workplace (p01) and progress within the rehabilitation hospital (p03). most individuals with abi expressed feelings of physical and cognitive fatigue, which was new to them. gratitude and support although the change post-injury brings challenges, individuals with abi expressed appreciation for what they could do prior to the injury and to have survived. p03 was grateful for the opportunity to share with other patients and learn from their experiences: ‘we also talked a lot about how grateful we are about where we are in our lives, alive… we learn from each other. we speak to each other. this is what i’m grateful for, this is what i’m going through, things like that. it’s also great to experience that [sense of community] because if you had to just lie there, you feel sorry for yourself.’ (p03, age 19, female) one participant expressed appreciation for previous abilities and the realisation of the loss thereof: ‘if somebody told me i can choose ten million rand or walking, i will take the walking.’ (p04, age 57, male) sos also reflected on their family member with an abi and the appreciation felt for what they have done for their family prior to the abi as mentioned by a participant: ‘i understand him better now, how busy he is on the farm … so yes, i’m appreciating him very much now.’ (so04, age 48, female) one participant discussed the importance of patience and education regarding abis. he was appreciative of the healthcare team that took time to explain the causes of stroke, and prevention thereof, which was important to share with those around him. as a result of the education, p06 chose to change his lifestyle as a precautionary measure: ‘the only thing is i have to take care of myself. and like i say i don’t want to drink anymore. i think it’s taking care [of himself] is the most [important] thing stroke has taught me.’ (p06, age 37, female) loss of independence all participants were disheartened as they became dependent on their so for at least one activity of daily living, such as driving, cooking, and bathing. one participant admitted to this by stating: ‘she’s [so] also doing things that she didn’t do before … she’s cooking, she’s doing everything for me.’ (p02, age 47, male) p02 and p03 reported difficulty with their vision and hearing at the time of their interview. these difficulties interfered with activities such as shopping, leisure activities and mealtimes: ‘my ears were so sensitive to noise … my mom was busy chewing an apple and i was busy filling in a wordsearch. i couldn’t concentrate.’ (p03, age 19, female) none of the six individuals with abi could drive post-discharge. the participants were concerned regarding their loss of independence: ‘they [medical doctor] told me for about six months that i won’t be able to drive. so that’s also gonna be a little bit of an adjustment because i’m used to being independent. i don’t normally ask someone to take me somewhere to do grocery shopping or things like that.’ (p06, age 37, female) p02 attempted driving but reported difficulties with his vision and did not resume driving thereafter: ‘when i’m driving [in the car] there are four [pictures] of the road. i can meet up in an accident very easily.’ (p02, age 47, male) regarding sos, three were already adapting to living with their family member with an abi, while the rest were awaiting their family member’s discharge from a rehabilitation facility. so01, so02 and so05 expressed challenges caring for someone who is no longer as independent as before. so02 experienced additional struggles when it came to bathing her family member: ‘i will go with him in the bath. i must get in the bath. i must sit by. i must give him the face cloth. it’s like i’m teaching a 6-year-old to wash. i’m struggling because we don’t know how long he is going to be like this [dependent].’ (so02, age 42, female) unlike the other dyads, so05 only expressed an increased role of driving her brother to appointments and for running errands as the major change: ‘that’s the only thing that has changed. i think i’m the chauffeurchauffeur.’ (so05, age 43, female) four of the six individuals with abi could not return to work post-discharge. these four participants understood the reasons for not returning to work and were willing to make necessary arrangements to ease into work settings as their recovery allowed. the other individual with abi (p03) was a student who could not return to her undergraduate studies, and the last participant was on early retirement. as a result of her abi, p03 was devastated that she could not return to her studies as planned: ‘i thought i would just rest the week and go back to bloemfontein and study again, and it was not the case. every time it [feedback from hcp] was just, okay you cannot do this, you cannot do that … and the saddest part for me was the fact that i couldn’t study this year again.’ (p03, age 19, female) work-related activities were also discussed as so01 spoke about loss of independence in the workplace: ‘he [family member with abi] still has his own business which he can’t manage, which i’m managing now … he has not very good short-term memory … and now somebody else must step in for everything that he did and is not doing now.’ (so01, age 42, female) all six sos anticipated or admitted to needing additional help at home because of the uncertainty of the abi. in addition to the increased burden of care, two sos expressed feelings of guilt regarding the abi of their family member. their statements were as follows: ‘nothing on earth will actually prepare you for this [abi] … if she [family member with abi] listened, this wouldn’t have happened. so now i’m asking you, how do we deal with this guilt?’ (so03, age 47, female) ‘it’s [caring for someone with abi] not easy. sometimes it feels as if you are the cause of that [challenges experienced since the abi].’ (so02, age 42, female) perspective on disability another concern among the sos was that of stigma associated with abis. so03 was comfortable sharing about the abi with others whereas the individuals with abi did not have similar feelings or attitudes: ‘she [family member with abi] is cross with me because she doesn’t want people to know that she had a brain injury. how must i lie about that?’ (so03, age 47, female) so02 acknowledged stigma and ways to overcome it, creating a positive environment for her and her husband with an abi: ‘he mustn’t feel like because now that he is having this injury, … he has this scar at the back of the head, now we don’t even want to take him to the people. like ‘you must always stay at home’, ‘you mustn’t come with us.’ no! you must comfort him. you must be the same with them [individuals with abi].’ (so02, age 42, female) a person’s culture may guide their overall experience. so05 recollected how the implications of the abi were more difficult based on how gender is perceived in her culture: ‘remember, in zulu culture, the male figure, they call them the prince. they’re the most important people in the family. so, it was a very tough situation when he was very sick.’ (so05, age 43, female) three family members experienced positive outcomes resulting from the abi, including their family member becoming motivated about leading a healthy lifestyle. one so expressed appreciation for her husband’s job and hard work since taking over his business, as is attested to in the following statement: ‘i understand him [husband with an abi] better now, how busy he is on the farm. really busy. and what he has and is doing for us. because it’s really a 24-hour job. he is the whole time busy… so yes, i’m appreciating him very much now. we are 29 years on the farm and now i know what he has done all these years.’ (so04, age 48, female) spiritual connection to recovery three individuals with abi acknowledged and were grateful for their spirituality during their recovery. p04 boldly shared: ‘but now god has given me a second chance and therefore i must rise for that… i have to fight for my wife and my kids,’ and remained motivated throughout treatment as a result. p03 commented on her “second chance” when discussing the severity of the car accident, ‘i couldn’t believe that i walked out of there alive. i got a second chance. i can’t even compare myself to the person i was a few weeks ago.’ spirituality was tied into experiences that involved healing: ‘after 24 hours, they were supposed to declare me dead. i got through the 24 hours to 33 days, and i woke up … my ancestors were with me.’ (p02, age 47, male) p02 further offered advice to other individuals with abi that involved trusting (higher power) and letting (this higher power) fight for you through the tribulations. it was evident that this participant found encouragement through spirituality. three of the six sos shared their spiritual beliefs and the reliance on faith as integral in managing day-to-day challenges. sos discussed how prayer helped them cope through the difficult period and the perceived premonition that warned them of something that was about to happen to their family member. sos appeared to be thankful for their spirituality as it helped their family member with abi through the healing process. sos were aware of medical intervention surrounding the abi, but still relied on their faith. the following attests to this: ‘even though they’re [hcp] not sure whether he [family member with abi] will be hundreds, but everything is going to be fine as we are hoping. all of us hope for the best. only god provides.’ (so05, age 43, female) themes of participants with an acquired brain injury healing takes time five of the six individuals with abi were transferred to a rehabilitation facility after discharge from their respective acute hospital. they acknowledged the effects of their abi as more serious than they expected and, consequently had extended hospital stays for rehabilitation: ‘the repercussions of this thing [head trauma] is like, giant … i didn’t know that this would take so long for everything [cognitive-communication skills] to come back and heal … i was in the hospital more than i was home this year.’ (p03, age 19, female) along with the consequences of the abis, all participants were aware of the time factor that partnered with healing and the patience to regain independence. p06 shared about her progress: ‘i know it might sound maybe cliché, but i think it’s better to be positive, than to be negative. and the quicker that you get into it, to accept that you need help, you will do better… like in the start, i couldn’t take a ball, just a small ball to put it from one bucket to another one. and now i’m using my toothbrush.’ (p06, age 37, female) two of the three individuals with abi (p01 and p05) who were discharged at the time of their interview were attending outpatient therapy. p01’s statement showed awareness of his additional therapy needs: ‘i was going out of the hospital, and i heard i’m coming back every second week. then i started realising that this [communication] is actually the main reasons.’ (p01, age 56, male) although p02 was not attending out-patient therapy, he continued to exercise at home to return to previous activities: ‘i must not stay in one place. i must go up and down just a little bit in the house so that i must get used to those things [exercise] again.’ (p02, age 47, male) an increased awareness of the individual with abi’s limitations appeared to be motivating and created a positive experience when noticing their own progress. perceptions of and need for support all individuals with abi expressed their emotions towards their injury were suppressed as they tried to cope and recover. while participants had differing opinions of how positive their hospitalisation was, they all expressed a need for specific support. the perception of their need for support may have been influenced by the context of the covid-19 pandemic and changes in hospital staffing patterns during the time of crisis. participants perceived a need to have a space for therapeutic sharing. they might have had difficulties with the abi itself, but the need that was expressed was one of sharing the experience that they have had, as is shown by p03: ‘everybody knows what i’ve been through, but nobody knows how i felt.’ (p03, age 19, female) two of the six abi survivors expressed benefits of sharing thoughts and feelings with others who had also experienced such an injury. services offered by social workers and psychologists were available to all individuals in this study, but only three made use of them. participants suggested that acute and rehabilitation facilities consider creating environments for individuals with abi to share experiences, such as support groups, which encourage emotional and psychological progress: ‘i was talking to everybody and i was starting to feel better’ (p01, age 56, male) ‘they [the rehabilitation facility] should implement something where they can help people to be more positive about their situation’ (p06, age 37, female) while some participants were positive about their encounters in the facility, others had negative experiences. some participants raised complaints regarding service provision and readiness for discharge. two individuals with abi expressed that nursing staff were not proactive in looking after them during acute hospitalisation. additionally, p04 was upset because he felt that he did not receive individualised care in the rehabilitation setting: ‘so, some days they [physiotherapists] leave you for a moment to take care of another patient. i don’t like that because i want them to finish with me before going on.’ (p04, age 57, male) this participant voiced a misalignment in the support he received and what he felt he required. the feeling of frustration was evident as p04 became flustered discussing care within the facilities, losing grip of his cellphone, and requiring assistance from care workers during the videoconference. despite the expressed need for improved support, there was also a perception that their experience was mostly favourable. three participants were still hospitalised in a rehabilitation unit, subsequent to discharge from an acute hospital, at the time of their interview and reported positive experiences regarding progress made. two of the three participants felt adequately prepared to return home despite challenges they may still face: ‘the therapists and the doctor are also giving me so much information. i feel better about all the anxiousness and … going home.’ (p06, age 37, female) participants acknowledged the impact of rehabilitation and took note of their own progress made during this time. two participants shared their experiences: ‘this place [rehabilitation facility] did wonders for me really.’ (p03, age 19, female) ‘my brain got better when i was here at hospital h.’ (p04, age 57, male) themes of significant others information needs among all sos, a clear need arose for streamlined services by hcp in the hospitals, as well as education and written information presented during the acute stage. as a result of poor coordination of services, there was limited guidance offered to sos at the time of discharge: ‘no one told me that [individual with abi] needs rehabilitation. no one’ (so03, age 47, female) another statement regarding realistic expectations was also made by so03, ‘sometimes she gets aggressive, and i don’t know why because they didn’t even tell me you must expect something like this.’ (so03, age 47, female) written information regarding various rehabilitation facilities and services would have been helpful in the case of so01 where she suggested: ‘i suggest brochures … because now everybody is phoning you with no concrete anything. i never took down anything over the phone. i told them, mail me, so i can read through it.’ (so01, age 42, female) it appears that participants preferred information in a written format, hard and/or electronic copies, to make informed choices. information being provided verbally or telephonically may have contributed to the overwhelming emotions felt at the time of transfer from the hospital to rehabilitation facilities. the covid-19 pandemic may have further contributed to this view as family members could not visit the hospital or rehabilitation facility and hcp may have relied on telephonic means of communication. the importance of information to guide decision making was highlighted in the following statement: ‘i did agree to anything they [hcp] were saying because i just assumed … they’re professionals, they won’t do something that was going to hurt him [family member with abi]’ (so02, age 42, female) when the opportunity arose for the sos to ask questions in the rehabilitation facilities, they felt informed and satisfied with what they were told. this opportunity only arose in the rehabilitation facilities when family meetings were held and not in the acute settings. improved communication between sos and hcp would have improved the overall experience transitioning from acute care. so01, so04 and so06 perceived communication with hcp in the acute setting as poor. the following statements attest to this finding: ‘nobody phoned us for about four days’ (so01, age 47, female) ‘it must be easier to communicate with them [hospital staff].’ (so04, age 48, female) ‘you don’t know what’s going on. really.’ (so06, age 43, male) coping and advice to other significant others who are caring for an individual with an acquired brain injury all sos offered advice or suggestions on how to cope when a family member has an abi. so06 and so02 respectively stated the following which portrays positivity and a sense of embracing their new situation: ‘you can totally change your life. it doesn’t mean it’s a life sentence. she [individual with abi] is going to be more motivated about her lifestyle than in the past.’ (so06, age 43, male) ‘we must accept the situation and they [families members caring for individual with abi] must also give the person [with an abi] love.’ (so02, age 42, female) two sos had an idea of what to expect and felt better prepared as they had previous experience caring for a family member with an abi: ‘i have a disabled sister … and i know what she does. and when i saw this, i could make the similarity.’ (so03, age 47, female) ‘my dad couldn’t speak … so, i know what is happening now.’ (so04, age 48, female) importance of family support was emphasised and reliance on family members was encouraged by so01, so02 and so05. there is a clear benefit in cases where other family members are also able to assist in full-time care: ‘she’s [individual with abi] staying at my mother-in-law at this stage. she’s [mother-in-law] always at home, and she can drive and everything … it’s helping me and her [individual with abi] because now she doesn’t feel she can’t do anything for herself, because she can still move like she wants to because her mom is with her … like i said, i’m working the whole time. if she was staying at home, she would get lonely.’ (so06, age 43, male) discussion the six main themes provide insight into the lived-experiences of a sample of individuals with abi and their sos one-month post-discharge from an acute facility. their experiences were largely influenced by the covid-19 pandemic. improved communication with staff, the need for written information, a lack of physical contact with loved ones, a need for support groups as well as more streamlined services, were factors that shaped participants’ experiences. all individuals with an abi expressed that emphasis was placed on making progress with physical abilities and minimal opportunities arose to work through their emotional trauma. feedback within peer support groups may be beneficial for individuals with abi to monitor their progress and emotional well-being (reese et al. 2009). support groups and psychosocial treatment can be encouraged in the early stages of care by allied hcps (nash et al. 2021; wijekoon 2020). not all participant experiences were negative. participants additionally offered advice to other individuals with abi in earlier stages of recovery, who may experience similar situations in the future. sharing experiences and making sense of recovery between fellow survivors with an abi may provide support in ways that are different to that of hcp and family members (kersten et al. 2018; wijekoon 2020). a loss of an individual’s idea of self, pre-injury, may alter how they perceive themselves within a familiar context, post-abi, as they can no longer participate in tasks as actively or independently as before (chembeni & nkomo 2017). counselling is important and likely provides means for individuals with abi and families to cope with stigma, loss and other emotional challenges post-abi (joosub 2019). although beneficial, psychosocial intervention may not always be available or affordable, in upper-middle income countries such as south africa (harrison et al. 2017; joosub 2019; pillay & barnes 2020). service provision, education and readiness for discharge were concerns raised by individuals with an abi. sufficient preparation and education around the time of discharge may ease anxiety and uncertainties felt post-discharge from acute hospitalisation (abrahamson et al. 2017; walker et al. 2021). unfortunately, the transition between acute and rehabilitation facilities has been reported as fragmented in some instances (piccenna et al. 2016). healthcare teams could improve their handover by including a written report to hcp at the receiving facilities for improved continuity of care. this may allow for better understanding of the individual’s current level of functioning and abilities transitioning from the acute hospital. readiness for discharge can be determined by a team of collaborative professionals to ensure the best outcomes for the individual with an abi and their family (walker et al. 2021). the two individuals with abi who felt adequately prepared for discharge had improved insight into their abi and were aware of ongoing rehabilitation needs. this reflects positively on patient education and person-centred care (berntsen, yaron, chetty et al. 2021). allied hcp, such as slts, can create opportunities for individuals with abi to ask questions, improving service provision along the continuum of care, through education (gauvreau & le dorze 2020; o’ connell et al. 2021). in addition to health education, participants appear to rely on their faith during challenging times. corroborated by other studies, individuals with abi also mentioned their belief being an important aspect of the recovery process (karpa et al. 2020; masuku & khoza-shangase 2018; souchon et al. 2020). faith and spirituality were the centre of most of participants’ motivation and recovery. emotional well-being was important to individuals with abi as they often felt misunderstood by their families and peers. although motivated by progress, individuals with abi remained anxious about activities such as driving and returning to work (kusambiza-kiingi et al. 2017; walker et al. 2021). there are recent reports of south african companies offering additional support to individuals with abi readjusting to the workplace (akbar & wissink 2018). an implication of this study would be for more companies to offer such benefits for individuals with abi easing back into the work setting. where this is not possible, psychosocial support and rehabilitation is re-emphasised (whitehead & baalbergen 2019). neuropsychological difficulties in certain areas of functioning may influence the return to productive work and consistent neuropsychological assessment is highlighted (fortune et al. 2021). a loss of function in individuals with abi may result in increased burden of care on the sos (bordonada 2017; kreutzer 2018). in this study, all participants were fortunate to have the option of both inand out-patient treatment, however this is not always the case for the general south african population (joosub 2019). high-caseloads and time pressures, with few qualified allied hcp, could have led to disparities in access to care (nash et al. 2021). sos try to navigate changes in their loved ones as well as their own new roles and responsibilities. hcp can be a vital source of support to sos at the beginning stages post-abi, and throughout the rehabilitative process (cheklin et al. 2020). trained caregivers who offer additional psychosocial support have been regularly researched and encouraged in the literature (karpa et al. 2020; kreutzer 2018). one of the sos caring for the individual with abi at home felt encouraged and empowered by the preparation received from the step-down facility. in this study sos were willing to share their knowledge about abis to their communities, utilising the opportunity for education. culture is likely an important factor that may influence how stigma is expressed and experienced by people living with disabilities and there is a need to move beyond traditional ideas to create awareness, but also encourage belonging within communities (jansen-van vuuren & aldersey 2020). sos expressed that being positive and embracing difficulties will help the family heal, as was found previously (lond & williamson 2019). on the contrary, the individuals with abi were more self-conscious of their diagnosis and its implications. increased self-awareness could be because of the stigma of an abi (villa et al. 2020). access to helpful and accurate information about various diagnoses may be hindered because of misinformation, or cultural beliefs and practices (villa et al. 2020). future research studies could investigate spirituality and culture and the influence on individuals’ attitudes to healing. healthcare professionals such as slts, can address this need for education through peer-based support groups. health literacy is important for families to better understand injuries and carry information into communities of any context (li et al. 2020). a finding of this study was the important role that the covid-19 pandemic played in shaping individuals’ experiences. the pandemic caused great upset despite the hcps attempts of consoling patients and families, while adapting to the hospitals’ changing protocols (aquila et al. 2020). emotional support and mental health of patients and hcps were important during this time, but the need may not have been addressed, possibly influencing the quality of engagement between hcp, individuals with abi and their families (o’connell et al. 2021). further research is warranted in this area. the most prominent difficulty caused by the pandemic was cancellation of hospital visiting hours. this likely resulted in hcp filling familial roles, simultaneously attempting to maintain a professional boundary (aquilia et al. 2020). visiting hours provide an opportunity for hcp to give feedback to families, subsequently benefiting the individual with an abi (silvera, wolf, stanowski et al. 2021). by terminating face-to-face interactions, hcp most likely adjusted to using electronic communication (boulton et al. 2021). this may have contributed to the negative experience regarding communication felt by sos in this study. limitations of current study although this study consisted of a small sample of 12 individuals, it yielded clinically relevant findings that could be useful for hcp during the acute stage of recovery. lived-experiences post-discharge have been widely explored, but there is limited research focusing on personal experiences one-month post-discharge from acute hospitalisation in settings such as south africa (souchon et al. 2020; van zyl et al. 2019). an interpreter was not used for this study, narrowing the responses to include only english, which was none of the participants’ first language. a longer time frame post-abi may allow for more experiences to be shared. the first author only included individuals with abi who had mild cognitive-communicative difficulties, excluding experiences of individuals with moderate to severe abi. to represent the diversity of the south african population, further large-scale studies in both public and private health sectors could be undertaken. conclusion effective communication, health education and handover between the healthcare team, individuals with abi, and their sos could improve individuals’ overall experiences in the acute stages of recovery post abi. as a result of subsequent emotional challenges, psychosocial intervention and support groups should be encouraged and made standard practice in acute and rehabilitation facilities (panday et al. 2021). improved person-centred intervention and an established continuum of care may assist individuals with abi and their families transition from hospital to their home environments (whitehead & baalbergen 2019). it may happen that individuals with abi are discharged and unable to return for follow-up services (joosub 2019). clear professional communication, teamwork, and collaboration is paramount during the acute stage of care. the slt and other hcp could therefore effectively use the time in hospital to ensure the most pertinent information is conveyed. research on the use of therapeutic support groups and counselling techniques should be further explored within healthcare systems similar to that of south africa such as botswana and namibia (legatum institute 2021). acknowledgements a heartfelt thanks to all participants in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions b.s.p. and e.k. conceptualised the project. k.t. collected and analysed the data, and co-wrote the article. b.s.p. and e.k. co-wrote the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references abrahamson, v., jensen, j., springett, k. & sakel, m., 2017, 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medical journal 109(2), 81–83. https://doi.org/10.7196/samj.2019.v109i2.00011 wijekoon, s., wilson, w., gowan, n., ferreira, l., phadke, c., udler, e. et al., 2020, ‘experiences of occupational performance in survivors of stroke attending peer support groups’, canadian journal of occupational therapy 87(3), 173–181. https://doi.org/10.1177/0008417420905707 world health organization (who), 2001, international classification of functioning, disability and health, icf, who library, geneva. abstract introduction methods results discussion conclusion acknowledgements references footnotes about the author(s) laura hartmann institute for life course health research, department of global health, faculty of medicine and health sciences, stellenbosch university, bellville, south africa alison hamilton department of psychiatry and biobehavioral sciences, faculty of health sciences, university of california los angeles, los angeles, ca, united states of america va center for the study of healthcare innovation implementation and policy, va greater los angeles health care system, los angeles, ca, united states of america amelia van der merwe institute for life course health research, department of global health, faculty of medicine and health sciences, stellenbosch university, bellville, south africa stefani du toit institute for life course health research, department of global health, faculty of medicine and health sciences, stellenbosch university, bellville, south africa wendy xakayi institute for life course health research, department of global health, faculty of medicine and health sciences, stellenbosch university, bellville, south africa xanthe hunt institute for life course health research, department of global health, faculty of medicine and health sciences, stellenbosch university, bellville, south africa citation hartmann, l., hamilton, a., van der merwe, a., du toit, s., xakayi, w. & hunt, x., 2022, ‘self-identified intervention priorities amongst women with road accident-acquired physical disabilities in south africa’, african journal of disability 11(0), a867. https://doi.org/10.4102/ajod.v11i0.867 research project registration: project number: 9371 original research self-identified intervention priorities amongst women with road accident-acquired physical disabilities in south africa laura hartmann, alison hamilton, amelia van der merwe, stefani du toit, wendy xakayi, xanthe hunt received: 26 mar. 2021; accepted: 19 dec. 2021; published: 25 feb. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: acquiring a physical disability in adulthood necessitates a range of adjustments, with past research suggesting that some challenges encountered are unique to women. moreover, several factors may complicate adjustment to an altered embodiment and difficulties in functioning after an accident, including insufficient rehabilitation and support services and problematic societal attitudes towards disability. in addition, women with disabilities are often excluded from health and social policy and programme development, an oversight that can result in support gaps. objectives: this article presents the self-identified priority interventions of women with road accident-acquired physical disabilities in south africa. methods: we conducted interviews with 18 women with road accident-acquired physical disabilities. the participants were recruited via snowball sampling. interviews were conducted by experienced interviewers, who were home language speakers of the participants’ preferred language of communication. the interview recordings were transcribed, translated, and coded by trained, independent researchers. results: study participants identified three key areas of intervention requiring consideration in supportive intervention planning: the acute post-injury environment and healthcare infrastructure, transitional services and social inclusion interventions. these were identified as overlooked areas in which they required support to successfully adapt to limitations in functioning. conclusion: to develop inclusive, accessible, and practical policy and programming for people with disabilities, exercises like those outlined in this research – eliciting intervention ideas from lived experience – should be conducted as they highlight actionable priorities for programming. keywords: acquired disability; intervention; lived experience; rehabilitation; sexual and reproductive health; women’s health. introduction road-traffic accidents and acquired disability in the south african context several 1000 people worldwide report significant injuries every day, some resulting in permanent disabilities (krug & sharma 2000). road traffic injuries are the number one cause of injury-related disability (world health organization 2013), and the who estimates that 20–50 million people are injured by road-traffic accidents each year (who 2018). in south africa, there are 25.1 road-accident-related deaths per 100 000 citizens reported annually (norman et al. 2007). there is little literature on non-fatal injuries in the country; however, extrapolation of global data suggests that south africa’s high road-traffic accident rate would imply a similar non-fatal injury and long-term impairment rate. this is supported by road safety campaign estimates, which propose that 20 south africans per day are involved in road-traffic accidents that leave them with a permanent impairment (arrive alive 2011). the prevalence rate of self-reported disability is 7.5% in south africa, of which 2.5% of them report physical disability (lehohla 2011). women (8.3%) are more likely to acquire a disability than men (6.5%) in south africa (lehohla 2011). acquiring a physical disability impacts numerous spheres of life, including employment opportunities (green et al. 2005), health care (browne & russell 2005), mental health (papadakaki et al. 2017), societal participation (west, luck & capps 2007), and personal relationships and sexual experience (hunt et al. 2018a; howland & rintala 2001; tellier & calleja 2017). acquiring a physical disability also creates barriers to accessing services, spaces and opportunities (sherry 2015). these barriers are both structural (inaccessible healthcare offices) and social (internalised prejudices held by healthcare providers) (hunt 2018a; lee & fenge 2016; o’dea, shuttleworth & wedgwood 2012; pebdani, johnson & amtmann 2014). in addition to their individual effects, the barriers influence each other, compounding the overall effect of exclusion experienced by people with physical disabilities in south africa (maart & jelsma 2014; vergunst et al. 2015). in the south african context, the lack of accommodating services and systems places limitations on participation and reduces opportunities for meaningful inclusion (sherry 2015). rehabilitation interventions for people with acquired disabilities in south africa historically, south african disability-focussed rehabilitation has operated in an institutional context and followed an approach rooted in a medical model (mji et al. 2013). in recent years, there have been efforts to move rehabilitation for people with disabilities from tertiary-level facility-based medical initiatives to ‘community-based rehabilitation’ (cbr) (sherry 2015). this encompasses not only the physical service of rehabilitation but also support for people with disabilities to participate actively in society (sherry 2015). yet, there are gaps between how cbr is envisaged, and the reality of what is delivered to people with disabilities in south african communities, leaving the majority of the population of people with disabilities without access to adequate rehabilitation or community support services (hanass-hancock et al. 2017; sherry 2015). even though rehabilitation, and services for people with disabilities more generally, are necessary to access education, healthcare and employment opportunities and to facilitate equitable participation in society, they are not only neglected in budget allocations but there is also a lack of human resources to deliver them (sherry 2015). significant delays in the planning and implementation of rehabilitation services remain (sherry 2015). in 2013, a task team was formed to revamp rehabilitation strategies in line with the re-engineering of primary health care (sherry 2015). despite the involvement of experts and successful proposals, the combination of lack of resources and synthesis with other healthcare developments impacted implementation (sherry 2015). aside from rehabilitation services – with its patchy implementation and low coverage – in south africa, the main form of intervention for people with disabilities are social protection initiatives (sherry 2015; zuurmond et al. 2019). these include tax rebates, subsidies for housing and targeted grants (such as the disability and care dependency [dcd] grant). the dcd grant is meant to compensate for income lost because of disability-related inability to work and to cover some of the costs associated with having a disability (kidd et al. 2018; zuurmond et al. 2019). whilst the grant provides some financial cushioning, it offers no assistance with other issues faced by persons with disabilities (hanass-hancock et al. 2017). although provisions are made to provide housing for people with disabilities, necessary home adaptations, such as wider doors, ramps and accessible toilets and kitchens are not covered (hanass-hancock et al. 2017). currently, there are only a few government programmes in south africa focussed on addressing common difficulties experienced by people with disabilities outside of economic vulnerability. overall, an ever-present paradox in the healthcare system remains, particularly in lowand middle-income countries, that despite elevated health risks, people with disabilities receive consistently less care (sherry 2015). despite the adoption of progressive disability policy, the coverage, quality and needs-responsiveness of interventions is limited. at the same time as services may be limited and access to those which do exist is low, the content of programmes may also not necessarily reflect service users’ priorities. historically, services – particularly those in the medical sector – were exclusively designed, delivered and evaluated by ‘experts’, the latter being narrowly defined as various categories of medical and other professionals. however, in past decades, there has been a growing recognition of the need to involve service users – experts with lived experience – in efforts to design, improve or re-design services (bate & robert 2006; bradshaw 2008; carman et al. 2013; crawford et al. 2002; johnson et al. 2008). and, evidence suggests, these efforts are fruitful, with a 2018 systematic review by bombard and colleagues of studies about engaging patients to improve services found that engaging service users could improve outcomes at the institutional and quality of care levels and was positively experienced by service users themselves. whilst this recognition has emerged in health services research, it certainly has precedent in the disability rights movement, the clarion call of which has been ‘nothing about us, without us’. this saying highlights the importance of including experts with lived experiences in every facet of planning, policymaking, programming and evaluation, which concerns them. this involvement can be enacted through the meaningful inclusion of people with disabilities in the design and delivery of programmes (qureshi 2020). however, whilst the ethos of ‘nothing about us, without us’ is foundational in the advocacy community, research suggests that stigma and misperceptions about the competency of people with disabilities to contribute meaningfully to programme design is a barrier to the inclusion of people with lived experience in intervention design (qureshi 2020). as qureshi (2020) observed, the majority of disability programming is still controlled by people who do not have a disability, and this may limit the degree to which such programming is representative of people with disabilities’ priorities (qureshi 2020). considering (1) the high rates of road traffic accidents and acquired disability in south africa, (2) the implications of acquiring a disability for women’s functioning, (3) the scarce resources available to fund supportive services, (4) the importance of centring service users’ voices in programme planning and (5) the historical exclusion of people with disabilities voices from intervention conceptualisation, this research explores south african women with acquired physical disabilities’ priorities for programming. methods the present article deals with findings from a subset of data drawn from a broader study on the sexual and reproductive health and relationship experiences of women with road accident-acquired physical disabilities. despite the broader study’s specific focus, the data analysed for this article cover responses to more general questions about healthcare and rehabilitation, including an exploration of women’s self-identified priorities for supportive interventions after an accident. study design we conducted a cross-sectional qualitative interview study with women with acquired disabilities. this design was chosen given the research team’s interest in developing an in-depth, nuanced understanding of women’s experiences of acquiring a physical disability and its impact on their lived experience across a range of domains, as well as their self-identified priorities for post-injury support and other interventions. setting the study was conducted in khayelitsha, a peri-urban settlement outside of cape town in south africa. according to governmental records, khayelitsha is home to 442 721 people, but unofficial estimates situate the total population at closer to two million (sikhula sonke n.d.; western cape government 2020). this discrepancy is in part driven by the large proportion of khayelitsha’s populace living in informal housing, or ‘shacks’, which make estimates of population size complicated. khayelitsha has one main hospital, three provincial government clinics and a number of small municipal clinics, some of which focus on service provision for specific subpopulations, such as men or youth. study population and sampling strategy in order to establish the participant sample, snowball sampling was used. this was accomplished by distributing flyers at a research centre located in the target community of the study. the advertisement was distributed to women with physical disabilities through the knowledge networks of research assistants at the centre. the inclusion criteria for participants were that they had an acquired physical disability resulting from a motor vehicle accident,1 were 18 years or older, identified as a woman (both cisand transgender women were eligible), held residence in the western cape, and were able to give informed consent. each potential participant was screened, via a phone call, in accordance with the inclusion criteria. those who met the criteria were then invited to participate and had further study information shared with them. in addition, the participants were requested to allow an hour and a half for the interview. a total of 19 women were recruited, of whom 18 went on to be interviewed.2 the age range of the participants was between 21 and 76 years. data collection the interviewers were selected from the research unit with which one of the lead researchers was affiliated. all interviewers included in the research process received training in disability, women’s health and principles of qualitative interviewing. the majority of the data collectors were experienced interviewers, and all were home language speakers of isixhosa – the language of preference of the participants assigned to them. before the interview, a sheet detailing the study information was re-shared. after the participant had given informed consent, the interview was conducted in the participant’s home language. each interview was audio-recorded. after completing the interview, each participant was given a voucher to a local grocery store chain as compensation for the time and effort given to the study. materials the interview guide outlined the questions participants were asked during their interviews. the questions generally covered participants’ experience of romantic relationships, sexual and reproductive health services, and their access to these services. the focus of this article is on self-identified priorities for healthcare intervention following an acquired physical disability. the question prompts used in the interview guide included the following: if you were a doctor and you wanted to set up a clinic to serve women with acquired disabilities, what would you focus on? what would you do to make your clinic and services useful to women with acquired physical disabilities? if you could design a programme for women who had just been in a road traffic accident and acquired a disability, what would your programme do? the guide was translated into isixhosa for use by interviewers. data analysis thematic analysis was used to analyse the data (braun & clarke 2006). this method was chosen for its ability to be applied to multiple data types ultimately resulting in a well-developed understanding of the reported narratives. each transcription was translated from isixhosa into english by a translation professional, and then back-translated and checked. transcripts carried no identifying information on participants, but rather were marked with a participant identifier (pid), which allowed for data units (such as sentences or stories) to be connected to a single speaker. the analysis proceeded in two stages: firstly, two independent researchers read all of the transcripts to familiarise themselves with the data set. then, the translated interviews were coded by two independent researchers – one english speaker and another isixhosa speaker. each researcher read the transcripts a second time, working to identifying important units of meaning (codes). these were flagged in the transcripts using the comment function in ms word. once the transcripts were coded, the researchers and the study lead discussed the codes. where there were disagreements between coders about the meaning of a specific section of the data, the isixhosa speaker reverted to the original isixhosa transcript and discussed the quoted text in question with the english coder and another isixhosa speaking research team member to allow the team to arrive at an accurate interpretation and coding of the text. based on the discussion of the codes, a preliminary sense of the data set’s main themes emerged amongst the research team. the lead author, who was responsible for the present article’s topic (self-identified priority interventions), then organised the codes into themes and developed an initial document detailing the rationale for attaching codes to specific sections of transcript, and the relationship between themes and codes. the inclusion of a native isixhosa speaker in the analysis was particularly valuable as isixhosa is a richly figurative language. the meaning behind some isixhosa figurative language can be lost in translation and thus not be coded. the researcher consulted with the data collectors and the transcribers in order to expand on the meaning included in the transcriptions. this practice of ‘cultural brokering’ can help to ensure that the participants’ experiences and contexts are correctly relayed and that meanings are preserved (gustafsson, norström & fioretos 2013). furthermore, it is important to engage oversight researchers and independent research assistants when conducting qualitative research. this is because the potential for impacted reliability is elevated if the interpretation of multiple coders is used in analysis, as emphasised by braun and clarke (2006). as outlined by lincoln and guba (1985), qualitative data can only be considered valuable if its trustworthiness can be confirmed. in order to maintain credibility of the data, the study utilised triangulation. as observed, both the translation and analysis processes involved a continuous feedback and revision process between multiple researchers. as a result of the nuanced nature of qualitative data, it is difficult to prove dependability and transferability. all research procedures were recorded, and demographic details about participants and the context of their experiences noted down to improve dependability of the findings and conclusions drawn and establish transferability of the study conclusions. ethical considerations a written informed consent was obtained from each participant, and the voluntary nature of the study was clearly explained. trained research staff experienced in qualitative interviewing conducted the informed consent process. all consent and information forms were given to the participants to read or read aloud in english, afrikaans or isixhosa. all participants were told that they have the right to decline to participate and could withdraw from the study any time without any adverse consequences. all results were kept confidential, except where participants disclosed significant harm to themselves or others, or requested help. the risks to participants included fatigue or emotional distress when asked about sexual violence or physical trauma. interviewers addressed these risks by reminding participants of the voluntary nature of participation and regularly checking whether they were happy to continue with the interview. in the case of emotional distress, a clear referral protocol was in place. ethical approval for this study was obtained from the stellenbosch university health research ethics committee (hrec) (approval #: n19/03/037). results amongst the issues discussed by the women, three major themes – corresponding to three different types of priority interventions – were identified. each theme contained subthemes, and the relationship between the major themes and subthemes is laid out in table 1. table 1: major themes and subthemes. healthcare infrastructure the first theme identified concerned desired supports characterised by their utility in the acute period following an accident, which resulted in a permanent impairment. this theme also concerned the accessibility of healthcare facilities to which the women required ongoing access because of their impairment and related health conditions. physically accessible infrastructure was central to participants’ accounts, with a particular emphasis being placed on the need to enable access to healthcare services in the form of ramps. the women raised concerns about the lack of ramps interfering with their ability to access medical care on an equal basis with non-disabled people. participants observed that ‘ramps for entrances [are important] because you would find that in some clinics it is not easy to get inside’ (p1) and ‘hospitals should have ramps you can get in easily’ (p18). women also related that at their hospital post-injury experience was marked by difficulty in accessing ablution facilities. a number of women expressed concerns surrounding scarcity or complete lack of accessible toilets in these settings. one woman stated, ‘… you would find that they only have one toilet for people with disabilities [sic]’(p1). she also reported that at the clinic she now visits for routine medical services, the only accessible toilet available, ‘… is always locked and it is a storeroom’ (p1). another woman shared: ‘[e]verywhere i go, before i can do anything i start by checking and go to the toilet and check if the toilet is designed [sic] for [me] who is on [a] wheelchair.’ (p8) another participant observed that in most healthcare facilities ‘toilets are not friendly for people with disabilities, so i would try to make them better so that [disabled people] can also feel comfortable’ (p12). a further area which participants identified as a priority domain for the provision of post-injury support was how to negotiate routine contacts with the healthcare system once they were discharged from tertiary care. utilising primary care facilities appeared to be an area of particular challenge, as clinics were not designed with accessibility in mind. the women found that their physical impairments simultaneously necessitated them to visit healthcare facilities more frequently than people without disabilities, and yet made waiting for extended periods of time difficult and uncomfortable. for these reasons, many participants made recommendations for post-injury support, which entailed the strengthening of primary healthcare systems to be more accessible, inclusive and accommodating of people with disabilities. for instance, some women recommended that clinics could prioritise persons with disabilities in queues. one woman suggested, ‘[people with disabilities] are the ones that the clinics should attend to first… because the clinics we go to are packed’ (p3), whilst another observed that she ‘would like people with disabilities to be given priority than those who went to the clinic for minor things’ (p14). participants’ desire to see long waiting times at clinics reduced and difficulties in navigating the built environment of healthcare facilities addressed, should also be seen within the broader context of difficulties in getting to healthcare facilities. many participants find it difficult to get transport facilities for going to clinics and hospitals. this led to the identification of an additional priority for intervention, with one woman suggesting that ‘… [it would help if] there can be a minibus service from the clinic… then again after check-up take them back home’. finally, a number of participants expressed the need for more empathic and informed service from healthcare workers. women noticed a desire for ‘[a] clinic that cares’ (p14), and the need to ‘make sure that [people with disabilities] are treated well’ in healthcare settings (p10). women referred to experiences of poor treatment and marginalisation within the healthcare system, both during the acute post-injury phase and in routine contacts, and call for more respectful services responsive to patients with disabilities. transition interventions the process of transition (adjustment to functioning as a person with a physical disability) was another area highlighted by the participants as full of opportunities for supportive interventions. transition interventions suggested by the participants focussed on assisting women with acquired disabilities to adjust to their new embodiment and functioning. a number of study participants reported a notable lack of support during this transition phase and made suggestions for how this could be addressed. one common recommendation regarded the need for widespread provision of wheelchairs and wheelchair support. women stated that ‘… mak[ing] sure that everybody has got a wheelchair that is in good condition’ (p8) was imperative, so that a lack of access to this assistive technology would not be a barrier to their participation. many of the participants in the study also stressed the need for support beyond assistive devices, most notably in the form of psychosocial support. some of the women suggested support groups, and: [h]av[ing] a centre whereby [women with physical disabilities] can meet all [together] to discuss things that concern such women.’ (p1) another participant shared the desire to spend time with other women who could mirror her own experience and with whom she shared a common ground. she said, ‘i wish sometimes that [i can spend time with] someone [who] feels what i feel… not to just come and talk about something you don’t know’ (p2). other women suggested that the introduction of support groups for women with physical disabilities in their communities would allow women to access needed information, for instance, how to do housework after acquiring a disability: ‘… as women that are living with disabilities [i would] like [to] talk about how [i could] help in house chores’ (p1). several respondents highlighted the need for empowerment-focussed programming, explaining: ‘i wish that [women with acquired physical disabilities] can learn to be independent not to depend [on] a partner you see. [i] wish that they can learn to be independent, if you have children just look after your children and be independent without depending on someone for your life to move on.’ (p2) another woman noticed the need for programmes focussed on building the self-esteem of women with acquired disabilities: ‘[a programme] would encourage the women with disability… you see it hurts to be undermined especially when you were born normal [sic] and see yourself people with disabilities it’s not easy to accept even for me – you see that crutch – i couldn’t use it, you see when i see people passing by me i would struggle and end up falling down, when you are walking with other people you forgot that crutch because you are not used to it you used to walk for yourself it’s not easy.’ (p3) the desire to impart encouragement and support the development of a positive identity and self-esteem as a women with an acquired disability was echoed by others, with one woman opining: ‘i would like to add by telling [women with acquired physical disabilities] that they need to be confident about their bodies’ (p8). another woman stated the desire for a more general type of support group here peers could share information. she said: ‘i [would suggest] a programme that gather[s] you together as women and [allows you to] advise each other that no when life is like this, this is what you need to do because some of us are still married or others got married after the disability. so that is the way that you can relate even with those who [have] not yet accepted [that they have difficulties in functioning] and all that, so that is what i can do.’ (p18) this need for information was seconded by another participant who observed the need for programming, which ‘teaches one to seek knowledge about being disabled’ (p6). a similar desire for improved knowledge underlay several participants who expressed the need for sexual education for women with physical disabilities. participants noticed that such programmes could not only serve an informational role, informing women with physical disabilities about matters of sexual health but also promote women’s autonomy in sexual relationships. as one participant stated, ‘i would teach them when they visited my clinic, teach them about sex’ (p12). social inclusion interventions there was a final cluster of suggested interventions, which were responses to the need for broader changes to be made to the participants’ economic, social and personal environment in order to facilitate their adjustment, functioning and participation. participants expressed need for employment and skill development for women with acquired physical disabilities. the main motivation for this request was economic security. one woman said: ‘i would try something like farming. so that people can have jobs and not rely on grant money. it must be owned by us, we must not have people who are not disabled helping us.’ (p17) furthermore, women emphasised the need for reasonable accommodation in employment. one of the participants said, ‘i was supposed to work at civil centre and at mitchell’s plain but there are stairs. so i couldn’t’ (p16). others echoed this sentiment regarding the need for economic opportunities to facilitate independence and – centrally – to allow women to continue to fulfil their roles as providers for their children. one woman explained: ‘[we need] things such as jobs, whether a person is doing a hand work or sewing but something that is going to keep her busy, so that she can also see that she is important not important by getting grant money no, but something that can also help her in future be able to work for her children like everyone else.’ (p16) another respondent called for ‘something that will make us money … so that those who have children can be able to take care of their children’ (p17). finally, participants highlighted the need for attitude change around disability. ‘teach people that people with disabilities are also humans, they can also do things that people without disability can do’ (p8), one woman explained, whilst another suggested the need for education, which would change the stigmatising behaviour of people without disabilities towards people with disabilities in the community: ‘the first thing is that when you see a disabled person, don’t be like you are seeing an animal or a strange thing. look at that person and put her closer to you, after that check what her problem is, sit down with her and ask her questions although you are also disabled. talk to that person because it might happen that as you are disabled also but maybe she is disabled more than you, understand.’ (p9) discussion the purpose of this research study was to identify priorities of south african women with physical disabilities for intervention after acquiring a physical impairment. firstly, the theme identified in this study concerned the quality and accessibility of health care. participants emphasised the need for ramps and accessible ablution facilities at healthcare facilities, shorter waiting times at clinics, and more informed and empathic treatment by healthcare professionals. secondly, participants identified challenges encountered whilst adjusting to an altered embodiment and difficulties in functioning. within this theme women emphasised the importance of assistive devices such as wheelchairs, and psychosocial support, as potential enablers of adjustment. in addition, participants pointed to the need for sexual and reproductive healthcare services and education to be strengthened. thirdly, women highlighted the need for broader changes to their environments to facilitate social inclusion, particularly the provision of economic opportunities, employment and skill development to enhance their independence. our findings echo a number of past qualitative studies on the experience of individuals with disabilities, many of which contain reports of discontent with the state of disability services, including in terms of health care (ganle et al. 2016; rugoho & maphosa 2017; who 2011; zuurmond et al. 2019). the need for accessible rehabilitation and health services, including assistive devices, is well documented (maart & jelsma 2014). individuals with physical disabilities have a significantly higher likelihood of having unmet healthcare needs, and like our participants, being female, experiencing poverty and being unable to access private health care, contribute to this risk (mahmoudi & meade 2015; sakellariou & rotarou 2017; smith 2008). equitable access to care is important as it has both individual and broader structural ramifications, which impact the person with the disability, including physical, social, psychological and economic well-being, as well as independence (neri & kroll 2003). the negative experience of healthcare and rehabilitation services, general healthcare services, and exposure to lack of knowledge and negative attitudes amongst healthcare providers found in this study have been reported elsewhere (maart & jelsma 2014; sakellariou & rotarou 2017). previous research studies support our findings that people with physical disabilities need more informed and empathic care from health professionals, and the results of this enquiry point to the need for strengthened training of health professionals to work with people with disabilities (au & man 2006; kirschner & curry 2009). it is notable that despite the present data being drawn from a study concerning sexual and reproductive health, the themes of sexual and reproductive health and sexuality did not feature prominently in women’s priorities. indeed, the kinds of interventions or supports that women wanted had more to do with enabling access to basic services and participation in their communities, including access to work, than they did with the kinds of things which usually comprise rehabilitation programming. however, this finding is supported by past work. in auger et al.’s (2020) study on the perceived priorities and needs regarding sexuality for individuals going through stroke rehabilitation, support for basic activities of daily living, such as eating, communicating and walking, was perceived as more important and a bigger priority than sexuality. however, similar to our findings, auger et al. (2020) also reported that – despite the prominence of basic needs such as access to work and health care – there was a desire to address sexuality in some form. the relative importance of sexual and reproductive health and sexuality may change over time, with its salience increasing after the acute and post-acute phases of acquiring a physical impairment. for instance, leibowitz (2005) reported that sexuality was not a priority soon after injury for a majority of the women interviewed in their study, but that it became more important later on in the women’s lives. a key strength of this study is the foregrounding of women’s experience of healthcare services for persons with disabilities, and the creation of a platform for the self-identification of programming in need of strengthening. a potential limitation of the study is that all of the participants reside in the same geographical area and were recruited using snowball sampling, thus limiting the transferability of the findings. in order to gain a more generalisable sense of south african women with disabilities’ intervention priorities, the same study could be repeated in other areas. however, it would likely be more impactful for the processes of this study to be taken up by national, subnational and private service providers for intervention planning and delivery. indeed, this study has demonstrated, in a small sample, that experts with lived experience of an acquired physical disability have clear ideas about the kinds of services and support, which would benefit them. bombard et al. (2018) observed that when service users are involved in intervention planning and design, it results in shifts in organisational culture promoting further patient participation, opportunities for collaboration and mutual learning between healthcare professionals and service users and could result in the correcting of power imbalances between providers and service users in healthcare settings. at the very least, this study has shown the potential for meaningfully including women with acquired physical disabilities in the design of post-injury programming to identify opportunities for intervention. conclusion the study findings point to the multiple barriers faced by women with disabilities in their attempts to access health care and adjust to difficulties in functioning after acquiring a physical disability. the supporting literature in this field shows that the risk of unmet healthcare needs is exponentially increased for those who are women, poorer and have greater difficulties in functioning. these women are an underserved population and need to be meaningfully included in programme planning, design, monitoring and evaluation so that their needs and priorities are adequately met. in this manner, we are more likely to have policies and intervention strategies that are representative of the community they serve, accessible to its users, and inclusive for all. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions x.h. was the principal investigator of the study and conceptualised the project methodology, data collection and article topics. she was involved in the data analysis and drafting of the manuscript. l.h. drafted the first draft of this manuscript, along with s.d.t. and a.v.d.m. w.x. assisted with coding of the data along with x.h. and carried out the project in khayelitsha along with s.d.t. a.h. was the 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to public health and the prevalence of motor vehicle accidents in the country. 2. the woman who opted out of the study after recruitment was advised by the administrator of the financial settlement from the accident in which she had acquired a physical impairment not to participate in the study. despite efforts made by the study lead – the last author of this article – to explain the purpose of the study to the woman and the administrator, he advised her not to take part. creatureness book title: left over author: kobus moolman isbn: 978-0-9869982-2-5 publisher: dye hard press, johannesburg, 2013, 61 pp., r125.00* *book price at time of review reviewer: rosamund (mindy) stanford1 affiliation: 1independent writer and editor how to cite this book review: african journal of disability 3(1), art. 127, 2 pages. http://dx.doi.org/10.4102/ajod.v3i1.127 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. book review open access left over (2013) is kobus moolman’s fourth collection of poetry. knowing the strength of his earlier work i entered this book tentatively, afraid of losing my balance. afraid of falling over emotionally. my fears were realised. i did not know anymore which was inside and which was outside. the words are stark and sparse. ordinary words, ordinary phrases a child would use. in the opening poem ‘back to school’, the air is ‘hot’ and ‘still’, the next door children are splashing with abandon: they have a swimming pool. a few lines on, ‘he remembers that his parents could only afford to buy the pack of six crayons – that did not have silver or gold or flesh’. the word ‘flesh’ stands out: a child hankering for novelty, an innocent longing (nevermind the presumptuousness of the manufacturer’s calling pale pink ‘flesh’). abruptly things slow to a standstill: ‘he stares at the table’. space looms between the lines. mastery of the reading pace is a feature of the book as a whole. in this second poem, the words are again ordinary, and the things are ordinary in ordinary relationship: ‘his elbows on the table/his book on the table/…/the light from the overhead lamp flat across the table’. then, slowly at first, the relationship between things shifts, the boundaries start to melt. among others, the line between animate and inanimate is obscured: ‘the table makes the humming sound of a refrigerator./the table with its dark underbelly./its secret place where legs go when they go underneath a table’. the viewer’s seeing of the table becomes an element of the table: ‘the table made out of weight and sight and ten scratches’. ‘weight’ and ‘sight’ listed along with the seeable and countable ‘ten scratches’, jolts the reader back to the concrete, back to earth – but not quite to the same earth. in later poems the line between the internal physical body and what is outside becomes permeable. and the sky is a tangible presence: ‘he wonders how much longer/he will be able to hold himself upright/against the sky’ (‘there is something’, p. 16). the more-than-oneness of some elements (such as the sky) is noticeable. apart from being a prop or holder, the sky is a mirror of incompleteness: ‘there is something missing from the sky. something his eyes should have seen. but did not have a name for’ (‘blood x 3 (1)’ p. 30). in ‘sitting again’ (p. 26), as the world begins to congeal, the sky becomes implacable: ‘air like a net without any holes in it’. the menace of the everyday in ‘he looks in the mirror’ (p. 13) is shocking: ‘and suddenly he thinks/how easy it would be/for the chair behind his desk/to plunge a sharpened slat into his back’. the fear is unrelenting, but there is a note of respite: ‘they come again, the dark birds of clamour.//… only the small chime of silver bells can hold off the clamour’. we meet hands and feet in unexpected places (and sometimes in unexpected numbers). in ‘and it seems to him’ (p. 12), the rain is ‘beating the world with/small silver hands and feet/beating it into the shape/of something that can be given a name’. then further on ‘with three hands/he beats back the distractedness/in his heart’. in ‘a warm wind’ (p. 19), we get ‘the smell of sleepless white walls and passages with hands’. or ‘he cannot understand his hands. they are just two loose things at the ends of his arms. he flaps them. they are heavy. he bites them. and they are hard’ (p. 41). hands in particular play multiple roles: sometimes agents of action and, as in the last example, near lifeless appendages. the idea of disembodiment goes a step further into dismemberment. in ‘he cannot understand his hands’, the ‘he’ of the poem follows a macabre line of thought: would chopping off his heavy and unfeeling hands liberate them? ‘would they bury themselves instantly into the ground like moles?’(p. 41) the ‘creatureness’ of being in a physical body, human or otherwise, is strong in this poem and in some others too. sometimes it is the inability to feel that is evoked through a creature: ‘the creature has no heart either. just a vacuum-pump that it manipulates with its huge hands’ (p. 21). the ‘he’ is a presence observed by the poet with clinical precision. it is ‘he’ whose inside and outside swap places or merge, whose experience of his own anatomy and of the physical world becomes transmogrified. so much so that ‘he’ reminds himself: that there was not just a front and a back to himself, but, more importantly, an outside. that he was standing up inside a sack of skin that went with him wherever he went, and this was what the rest of the house saw. (‘in the bathroom’, p. 50) but it is not only the poet (and the reader) and ‘the rest of the house’ observing (or scrutinising) the ‘he’. there is another observer: ‘something was always there with him, watching and listening, through the keyholes of his skin’. the struggle to hold on takes different forms. with the ‘three hands’ mentioned already, ‘he’ tries to haul himself back to some kind of faith: ‘he looks for a sturdy handhold,/one that will not come away from the wall/if he grabs it with his whole life//and pulls./pulls himself up/out of his unfaithfulness’. the poem, ‘hold just like that’, describing a photograph of the partially naked subject is chilling in its helplessness: ‘and the viewer is left with the question: what is the man going to do with the belt?’ (p. 42). then there is defiance: ‘an iron chain rattles/behind every sentence he stutters.//he steps out into the sun/and strips off all his clothes.// now god can see exactly/what kind of thing he’s dealing with’ (‘an open vice stands’, p. 53). the voice is consistent and the pared-down style has the confidence of a highly skilled writer, but the strongest feature is the absence of sentimentality: nobody is telling us what to feel. the poems are bleak and cleanly expressed. they are transformative in the way that butoh (the japanese dance form that emerged after hiroshima) is: they refuse to be trammeled by emotive or prettifying forms. they exist in an unidealised present: ‘an aloneness that was preparing itself for something. a quiet that had been separated from the rest of the house’ (‘in the bathroom’, p. 50). it is a privilege to read a book so seasoned in form and so naked in content. abstract introduction enabling the implementation of the convention on the rights of persons with disabilities methods results discussion acknowledgements references about the author(s) jill hanass-hancock medical research council south africa, south africa health economics hiv and aids research division, university of kwazulu-natal, south africa siphumelele nene health economics hiv and aids research division, university of kwazulu-natal, south africa nicola deghaye health economics hiv and aids research division, university of kwazulu-natal, south africa simmi pillay national department of social development, university of cape town, south africa citation hanass-hancock, j., nene, s., deghaye, n. & pillay, s., 2017, ‘“these are not luxuries, it is essential for access to life”: disability related out-of-pocket costs as a driver of economic vulnerability in south africa’, african journal of disability 6(0), a280. https://doi.org/10.4102/ajod.v6i0.280 original research ‘these are not luxuries, it is essential for access to life’: disability related out-of-pocket costs as a driver of economic vulnerability in south africa jill hanass-hancock, siphumelele nene, nicola deghaye, simmi pillay received: 28 apr. 2016; accepted: 20 dec. 2016; published: 31 may 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: with the dawn of the new sustainable development goals, we face not only a world that has seen great successes in alleviating poverty but also a world that has left some groups, such as persons with disabilities, behind. middle-income countries (mics) are home to a growing number of persons with disabilities. as these countries strive to achieve the new goals, we have ample opportunity to include persons with disabilities in the emerging poverty alleviation strategies. however, a lack of data and research on the linkages between economic vulnerability and disability in mics hampers our understanding of the factors increasing economic vulnerability in people with disabilities. methods: this article aims to present data related to elements of this vulnerability in one mic, south africa. focusing on out-of-pocket costs, it uses focus group discussions with 73 persons with disabilities and conventional content analysis to describe these costs. results: a complex and nuanced picture of disability-driven costs evolved on three different areas: care and support for survival and safety, accessibility of services and participation in community. costs varied depending on care and support needs, accessibility (physical and financial), availability, and knowledge of services and assistive devices. conclusions: the development of poverty alleviation and social protection mechanisms in mics like south africa needs to better consider diverse disability-related care and support needs not only to improve access to services such as education and health (national health insurance schemes, accessible clinics) but also to increase the effect of disability-specific benefits and employment equity policies. introduction the un 2015 report on the millennium development goals (mdgs) states that the mdgs have driven ‘the most successful anti-poverty movement in history’ (united nations 2015) and brought more than one billion people out of extreme poverty. nevertheless, some groups such as persons with disabilities have been left behind. acknowledging this and driven by the commitment to leave no one behind, the new sustainable development goals (sdgs) strive for a ‘world that is just, equitable and inclusive’ without discrimination based on any characteristic including disability (open working group of the general assembly on sustainable development goals 2015). persons with disabilities, who also account for one billion people or 15% of the world’s population (world health organisation 2011), are thought to live disproportionally (80%) in lowand middle-income countries (lmics), which also bear the burden of global poverty (ids 2010). amongst these countries, middle-income countries (mics) are home to three-quarters of the world’s population living in poverty (ids 2010; world bank 2015). hence, lmics and, in particular, mics bear the global burden of poverty and disability. although low-income countries, generally, have few or no mechanisms to counteract poverty or economic vulnerability, mics are currently developing mechanisms for social protection. this provides an ideal entry point to include persons with disabilities (international labour office & international disability alliance 2015). consequently, mitigating the risk of poverty for persons with disabilities in mics is not only essential but also well-timed and potentially achievable. literature suggests that disability and poverty are interrelated in a vicious cycle: with disability increasing the risk of poverty through a lack of opportunities and access, and poverty increasing the risk of disability through poor access to services (health and education) and safe water, risky environments and work conditions and food insecurity (banks & polack 2013; elwan 1999; graham, moodley & selipsky 2013; groce et al. 2011; world health organisation 2011). recent research indicates that this link is, however, more complex and nuanced than previously anticipated, particularly in mics (graham et al. 2013; groce et al. 2011; world health organisation 2011). these nuances are driven by the multidimensional aspects of poverty and disability-driven economic vulnerability which varies in relation to gender, disability type, environmental access and so on (mitra, posarac & vick 2013). as a result of this complexity, more research is needed to better understand economic vulnerability of diverse groups of persons with disabilities so that appropriate social protection mechanisms can be developed to mitigate disability-related economic vulnerability and through this the risk of poverty in these countries (banks & polack 2013; groce et al. 2011; palmer et al. 2015; world health organisation 2011). economic vulnerability can be driven by the costs (or resource changes) incurred by the individual or household as a result of disability. these costs can be divided into direct (additional out-of-pocket costs) and indirect costs (opportunity costs) (palmer et al. 2015). opportunity costs are understood as the value of the best alternative use of a resource (ucf, anova health institute & wrhi 2015). it is important to understand both sets of costs faced by persons with disabilities, in order to understand the economic vulnerability of these groups. in the context of disability research, opportunity cost on the individual level is, generally, understood as the income a person could have earned if they did not have a disability (which may reduce opportunities to earn an income). opportunity cost on a household level can also relate to a caregiver and will be equal to the income that this person could have earned if their family did not include a member with disability that required additional caregiving. literature on disability has described these disability-associated opportunity costs in lmics including south africa, usually in the form of educational outcomes, employment or days out of role (eide 2003; eide & kamaleri 2009; eide, khupe & mannan 2014; loeb et al. 2008; mall et al. 2014; mitra, posarac & vick 2011; mitra et al. 2013). these studies indicate that persons with disabilities are more likely to be amongst those out of school, have lower educational achievements, have less access to health services, have lower rates of employment and have more days out of role. all of these factors translate into lower personal income (banks & polack 2013). in addition, a few studies, in south africa and in other mics, have shown that opportunity costs are experienced by other household members, where these household members provide care and support at the expense of engaging in income-generating activities (banks & polack 2013; de koker, de waal & vorster 2006; dyson 2005). much less is known about the disability-driven out-of-pocket costs that persons with disabilities and their households experience in mics (banks & polack 2013; palmer et al. 2015; south african department of social development 2016). out-of-pocket costs are the additional expenses that an individual or household incurs as a result of disability. they can include the costs incurred to enable persons with disabilities to live (e.g. special food and day-to-day support), access services (such as health and education) and participate in society on an equal basis with others (e.g. costs to access employment and recreation) (banks & polack 2013). currently, we know very little about these costs as in population-based surveys only a small portion of these costs are prompted (e.g. some health expenditures). it is therefore currently impossible to estimate what costs need to be covered by social protection mechanisms to mitigate the economic vulnerability of this population in countries like south africa. hence, it is essential to better describe these disability-related out-of-pocket costs from the perspective of persons with disabilities and their household members. enabling the implementation of the convention on the rights of persons with disabilities understanding these costs is also essential to enable countries like south africa to implement obligations arising through the convention on the rights of persons with disabilities ([crpd]; see principles in box 1). as a signatory of this convention, south africa has made considerable steps to domesticate it into its legal framework. in south africa, the inclusion and equality of persons with disabilities is promoted through the constitution (constitutional assembly 1996; ngwena 2006; office of the deputy president south africa 1997), the white paper on the rights of persons with disabilities and the disability-disaggregated national development plan 2030 (south african department of social development 2016). box 1: convention on the rights of persons with disabilities principles. south africa has also developed a diverse system of social protection mechanisms to address inequality and poverty, which includes persons with disabilities through targeted grants (e.g. disability and care dependency grant), tax rebates, a housing subsidy and the employment equity act (1998/2016). in addition, south africa is currently developing a national health insurance (nhi) scheme as part of its plans to achieve universal health coverage (south african department of health 2015b) that highlights the prioritisation of addressing the needs of persons with disabilities. in addition, the country has developed a comprehensive framework and strategy for disability and rehabilitation services (south african department of health 2015a), which aims to provide a diverse set of disability and rehabilitation services. using this rights-based framework, the country also has to ensure that households with persons with disabilities do not experience higher opportunity or out-of-pockets costs related to their disability. the services that are provided by the state must enable them to participate on an equal basis with others. this is made difficult because of the limited understanding of the economic needs of persons with disabilities and the costs of disability in south africa and other mics. hence, evidence of these needs and of the costs experienced by households is essential for informing the development of inclusive social protection mechanisms, health care and education that are in line with the new legal obligations and frameworks. the work presented here was conceived within this context and informed south africa’s ‘project to accelerate the implementation of the convention on the rights of persons with disabilities’. this project was part of the first round of countries who were supported by the un programme on the rights of persons with disabilities (unprpd) to promote the rights of persons with disabilities. south africa focused in this process on the economic vulnerability of persons with disabilities and their households and needed ‘further understanding of the economic vulnerabilities’ (south african department of social development 2016) of this population. in order to inform this process, a study was conducted that investigated the economic vulnerability of households with persons with disabilities in south africa (south african department of social development 2016). as a global first in an mic, this study examined the disability-driven opportunity and out-of-pocket costs as well as the impact of social protection grants on households with persons with disabilities. the overall study included qualitative and quantitative methods of inquiry and a strong community engagement element and rights-based approach. the article presented here uses the qualitative component and describes the perceptions of persons with disabilities with regard to their disability-related out-of-pocket costs in contemporary south africa. methods based on existing literature (banks & polack 2013; groce et al. 2011; international labour office 2009; mitra et al. 2013), we conceptualise poverty within a multidimensional model (mitra et al. 2013), which takes account of economic deprivation based on access to health care, education, food and natural resources, as well as income-generating opportunities (such as employment). using this understanding, the study developed a guiding framework of economic vulnerability which embedded both direct and indirect costs, potential social protection mechanisms and contextual responses (south african department of social development 2016). a scoping review (hanass-hancock 2015) informed the development of this framework. we included a qualitative component in the study which aimed to describe out-of-pocket costs (related to accessing education, health, employment, housing, transport and care and support) from the perspective of persons with disabilities and their caregivers. within this investigation, we took cognisance of the diverse experiences of varied groups of persons with disabilities. in order to capture these varied experiences, we applied a participatory study design using focus group discussions (fgds) to develop a consensus of the typical costs that may be borne by households with persons with disabilities, for different types of disability. the study was conducted in close cooperation with the south african department of social development (dsd) and disability sector (department of social development 2016) and included a four-stage process: (1) consultative inception phase with dsd and disability sector, (2) primary data gathering (survey, two-hour fgd), (3) feedback summary and discussion of results with individual disabled people’s organisations (dpos) and (4) consultative validation phase with the dsd and disability sector. study participants for the fgd were identified in a two-stage process applying purposive sampling. firstly, the study approach was discussed with the dsd and disability sector during an inception phase and workshop. at the time of the study, disability programmes fell under the department of social development, which worked in close collaboration with a representative body of dpos. in the workshop, eight groups were identified for a more in-depth inquiry (figure 1). figure 1: sampling framework for focus group discussions. these groups included the representative organisation for persons with each disability type. participants were recruited from three provinces (gauteng, kwazulu-natal and western cape) through the leadership of the representative dpos. participants had to belong to one of the identified groups and included persons with disabilities (see figure 1) who were engaged in community outreach or held leadership positions within the representative dpos (hence were considered knowledgeable on issues of persons with disabilities). the overarching project also included groups representing children with disabilities, which are not described here. the article uses the terminology for these groups as identified by the disability sector in the inception workshop. each fgd, with the exception of the deaf-blind, included 3–14 people with disabilities. fgds were conducted in the participants’ first language (including sign language) by the researchers themselves and trained research assistants. persons who are deaf-blind were interviewed on a one-on-one basis to enable effective participation, which because of the nature of the impairment was difficult to enable in a discussion group. participation was voluntary and informed consent achieved in two stages. firstly, potential participants were approached through their respective dpo, and a written information sheet (or alternative, e.g. braille) explaining the purpose and nature of the study was provided. secondly, on the day of the fgd, verbal (alternative sign language) information was provided before informed consent was signed and fgd was conducted. participants were reimbursed for their time and transport. overall, 73 adults with disabilities participated in the qualitative part of the study (see table 1). each group discussion focused on the specific disability type experienced by the individuals in the group (accessing health care, work and transport) in either a mild or moderate form or a severe form. table 1: participants in focus group discussions. prior to the discussion group, participants had also completed the cross-sectional survey prompting their personal disability-related costs in the domains of education, work, housing, care and support, health care, transport and employment (south african department of social development 2016). this process stimulated reflection on potential costs, including hidden costs (such as maintenance of assistive devices, or transport costs associated with repeated health care visits), prior to the group discussion. this process helped to address some of the challenges reported in the literature which indicate difficulties in assessing out-of-pocket cost in lmics because of the lack of knowledge about potential services and assistive devices. during the discussions, participants were encouraged to find a consensus with regard to the cost experienced by a typical individual with their impairment or disability type (in both mild or moderate and severe form) and how this may differ in a rural and urban area. the fgd guide prompted cost of adult education, work, housing, care and support, health care (including assistive devices), transport and employment. data from the group discussions were translated into english and transcribed verbatim and analysed by the research team using conventional content analysis identifying themes as they emerged from the data. the quality of the analysis was checked through independent coding by two researchers for each interview. ethical considerations ethical approval for the study was provided by the department of social development, and the ethics committee of the university of kwazulu-natal (hss/0591/014). results the study revealed a diverse set of needs and costs that varied not only by degree and type of disability but also depending on the available infrastructure and accessibility of services. what people spent primarily depended on their household income level. considering the participants’ emphasis on differences between survival and participation, we structure costs in those (1) arising through increased care and support needs (survival), (2) accessing essential services (access) and (3) participating in home and community (participation and dignity). these themes do overlap. however, for the purpose of this article, this structure helps to highlight the participant’s perceptions of the difference between addressing disability-related out-of-pocket costs impacting on survival or access to essential services from those enabling participation on an equal basis to others as defined in the crpd. it also helped to highlight that some services, such as access to internet and mobile devices, are for some subgroups (e.g. deaf-blind) not a matter of luxury, but a matter of survival (instead of participation). costs related to increased care, support and assistance (survival) spending on care and support was discussed in all groups, as costs were unavoidable and essential for health and survival. these differ by disability type and depend on the specialised skills that are needed to provide care and support for the individual person. in general, persons with severe physical disabilities, dementia, low functioning autism and those who are deaf-blind required specialised and often full-time assistance (which was reported to be very costly), whereas persons with moderate intellectual disabilities or epilepsy needed assistance at particular times or for particular tasks (and the cost was relatively lower). participants reported that care and support costs mostly take the form of indirect costs, ‘costing’ the time of caregivers (usually a family member). however, if this assistance is provided by another person (not a family member), the direct costs depend on the skills required and time needed. ‘i suppose it will depend on the hours, probably let’s say unskilled person would be three [thousand rand] and probably more skilled person would be five or six [thousand rand, per month].’ (mother of person with autism, female, employed) participants with high care and support needs who are from lower income households reported that living in an institution is often the only financially feasible way of getting the care needed to stay alive and safe. care and support needs and the associated costs were closely linked to the available assistive devices and technology. in all discussion groups (except psychosocial disability), participants reported spending on acquiring assistive devices. for some groups such as the deaf-blind, access to communication technology, which is often seen as a luxury in mics, was seen as essential for communication, staying safe and participation. ‘but in terms of technology deaf-blind people also like a cell phone and ipad and people think, huh you want luxuries. but for blind people these are not luxuries trust me, it essential for access to life. … so it is just a problem technology is extremely important for everything.’ (person who is deaf-blind, male, employed) participants reported not only on the costs of acquiring appropriate assistive devices and technology but also on the cost of their maintenance. in some groups (physical and hearing), these were reported as an important element of disability-driven cost. those relying on public health care reported waiting long periods of up to three months for maintenance to be completed. participants elaborated that during this time they would have to live without the device, compromising their health and ability to participate in work and community activities. if they were able to, they would opt to pay for maintenance themselves (or from medical insurance, if available). participants also reported that persons who cannot afford the continued maintenance, particularly those in rural areas, would opt for other ‘inferior or inappropriate devices’ which could be harmful to their health or cause secondary complications. ‘yes, you see if you use a wheelchair on these bumpy surfaces of rural roads, wheels get bent easy. so if you are to be taken anywhere around through the wheelchair, expect difficulties ahead. physically disabled people in rural areas are normally carried away in a wheelbarrow because of the roughness of the land surface. if seriously ill, they may die on it.’ (person with physical disability, male, peer supporter and temporary employment) the participants’ descriptions highlight that some of the disability-related care and support costs, including assistance, assistive devices and technology, are essential for their safety and survival. they also shared their perception that the absence of care and support for some disability types such as quadraplegics was directly related to premature death. ‘quadriplegics die in rural areas. they are left in the bed and they die. maybe they might last three months.’ (person with physical disability, female, unemployed) they also explained that the inability of households to cover disability-related costs from their income threatens survival and increases costs related to access to services and participation in society. costs related to accessing essential services (access) in all seven fgds, the personal costs of accessing essential services such as health care, transport and adult education were described. the out-of-pocket costs of accessing health care services were related to increased frequency of medical consultations, specialised travel to health care facilities and additional care and support (while accessing health care services). these were described as increasing with the severity of disability. these costs were high amongst persons who needed more frequent health visits, in particular persons with physical disabilities, intellectual disabilities and epilepsy, and those who are blind or deaf-blind. reported costs were the lowest amongst those groups where the person with disability could travel to and use the clinic independently (without an assistant) and where there is less frequent need for health care. in addition, stock deficiencies and long queues were reported as causing unnecessary repeated health care visits and its associated costs. to circumvent these problems, in some cases, persons opt to acquire medication and care from the private sector at a higher cost. ‘it is also very time-consuming as public health care facilities are often characterised by long queues and unavoidable delays. in addition, people with epilepsy (especially in rural areas) rely on primary healthcare clinics/facilities for their medication and can be confronted by lack of stock, necessitating a second or even third trip to the clinic. some people just get told especially in the rural areas that if the clinic or hospital does not have the medication then they must buy it themselves. the person getting a disability grant ends up spending r400–r600 on the medication as they do not want their seizures to increase.’ (person with epilepsy, male, in learnership programme ) many groups discussed the use of assistants to allow them to use health care services effectively. spending on an assistant to support the health care visit was reported as potentially very high. in almost all groups, some participants reported paying for this assistance, even though (in most cases) it is a family member or friend who provides the assistance. those who do not pay the assistant directly reported providing food, drinks or a gift for the accompanying person. an exception was persons who have psychosocial disability and those who are deaf-blind. amongst these groups, there was little expectation of ‘donations’ for assistants. ‘people will need an assistant to get to the clinics, which can cost r200 a day …. if you don’t get dial-a-ride [subsidised transport] you have to use private transport up to r500… it would be r20 for the person and r20 for the assistant with dial-a-ride …’ (person with physical disabilities, male, unemployed) in addition, participants reported that patient transport vehicles (provided by the department of health) were not necessarily wheelchair-accessible and that there are no other accessible services that regularly service the hospital routes. in these cases, private cars had to be hired or the person was not able to use the health facility. participants reflected that in rural areas these costs would be even higher because of longer distances to health care facilities. ‘even hiring a car to take you to hospital costs higher. even calling for an ambulance can be challenging cause if you stay down the hill where can only be reached by foot, it is difficult. let me tell you something i haven’t been in a rural area because of such conditions.’ (person with physical disability, male, unemployed) transport to hospital was particularly costly, across most disability types. these costs were reported to be particularly high in emergency situations, when public services were not able to respond and when private sector ambulances had to be called. the cost of private ambulance services applied more to some disability groups (such as those with epilepsy) than others. considering that some disability groups may need to make use of emergency services more often than persons without disabilities, this may be considered an additional disability-related out-of-pocket cost. ‘i was very sick at home and everyone was still putting me in an ambulance, close to my house on the road and i was still getting seizures, number one, number two and the guy sitting with me inside just said [name withheld], relax you will be fine. so afterwards i rang to find out the price of when they came to pick me up and it was about r3000 or something.’ (person with disability, female, in learnership programme) use of health care was most frequent amongst persons with physical disabilities and those with psychosocial disability (where almost all are on chronic medication and where increased use of dentistry is reported). the study revealed that average monthly travel to health care facilities is highest amongst persons with moderate and severe physical disabilities. for other groups, these costs were ‘blurred’ through the use of family members as assistants who provide ‘professional services’ in the absence of affordable support and assistants. for instance, persons who are deaf-blind and those who are deaf emphasised the need for a sign language interpreter for health care consultations. often, these interpretations are provided by a family member or friend as formal interpretation services are prohibitively expensive (a rate of r2000–2500 per day). if the person with disabilities were to pay for such an assistant, the cost of accessing health care in these groups would be exorbitant. ‘if you hire an interpreter for one day it about r2500 for one day for two are r5000 for every day or per day… cheaper interpreter means skill is very low, you can get a cheaper interpreter but they have limit to the skill, the information that they give you and information that comes from me will not be to a good quality.’ (person who is deaf-blind, male, employed) three groups of participants, including caregivers and persons with intellectual disabilities, those with autism and those who are deaf-blind, commented on the high cost of adult education. for instance, participants revealed that education centres that accommodate the needs of persons with intellectual disabilities are often far away, hence associated with higher transport costs or costs for accommodation. similar information was provided by participants in the deaf-blind group and those with low functioning autism. participants also raised concerns about the quality of the education that learners with disabilities (more severe disabilities) receive in special schools. these caregivers elaborated that their ‘children’ were ‘just being kept busy’ in these schools and were not prepared for adult life. participants mentioned that they therefore make use of adult teaching centres for their ‘children’s’ education after the attendance of public schools. centres such as pave it, cateji and i-can were mentioned as useful adult education centres that offered training and learnerships for post-secondary schooling. these learnerships are supported through state funding or contributions from employers who support these programmes as part of their social development encouraged through the south african black economic empowerment (bee) strategies. again the transport to these scattered facilities was reported as an additional cost. some facilities tried to overcome this through providing transport, and others encouraged their learners to use subsidised or public transport. however, they experienced multiple challenges with this approach. ‘it [subsidised transport] is not reliable, so we as a company have been given three vehicles [a donation]… but the company has to provide by employing the driver and cover the petrol and insurance and it is a big cost … and who’s going to cover the cost of running the service?’ (caregiver of adult with intellectual disability, female, self-employed) hence in order to reduce the costs of accessibility, we need to provide better universal design within our mainstream services of health and education, but also adapted designs and assistance particularly in key related services such as transport. costs related to participation in the home and community (participation and dignity) participants reported that being able to access home and community depends on the accessibility of these environments. costs related to housing, transport and assistive devices and technology were discussed. these costs varied depending on the design of environments. for instance, where environments are physically inaccessible (e.g. no ramp and bumpy roads), alternative means of access have to be found. these result either in increased support costs or in the person not being able to access these environments. ‘i would love to just go out and go to the park, but once you have thought about what it cost for your transport, and for your assistant and for your wheelchair …, you rather decide to just stay at home.’ (person with physical disabilities, female, unemployed) similarly, accessible housing was mentioned as a necessity in the groups of persons with physical disabilities. participants revealed that this group needs adaptations in their houses (wider doors, accessible toilets, kitchens, ramps, etc.), and these can be expensive and are not covered by the state. again in the absence of these adaptations, care and support needs and costs were higher. participants reported that for those earning salaries above the income tax threshold, a portion (33%) of the costs for adaptation or support can be reclaimed in the form an income tax rebate. but this (partial) relief is not available to those whose income is below the income tax threshold or who are unemployed. some participants explained that some poorer households are able to access state-provided low-cost housing (known as rdp developments). although these rdp housing developments are meant to provide affordable accommodation to people from poorer households and policies include the provision of accessible housing, participants reported that in these housing estates basic infrastructure such as accessible toilets was still lacking. ‘yeah, since the government is improving infrastructure like building the rdp houses, some things are not accessible for us as the disabled. for instance those rdp toilets are not accessible for us disabled people especially the steps leading to the toilets.’ (person with physical disability, male, peer supporter and temporary employment) negative attitudes to adjusting these facilities in retrospect, or the absence of personal finance to do so, led to quite undignified situations. in particular, persons with physical disabilities and those ‘living with hiv who are getting worse’ were reported to have difficulties accessing these toilets because of the doors and steps leading to it. one participant further stated that requests for adjustments or modifications were refused, whereas another participant explained a similar situation and how persistent he had to be until an accessible toilet was provided. ‘while i approached the ward councillor regarding this matter and i explained to it as what sort of a toilet to be built for my condition and should be spacious. so if i needed to use the loo i had to stand outside while raining because of the size of the toilet.’ (person with physical disability, male, peer supporter and temporary employment participants highlighted that these issues are worse for people with physical disabilities in rural areas. non-tarred roads were reported as providing particular challenges to this group of people who ‘battle to walk on this terrain’. use of wheelchairs on these uneven surfaces results in damage to the wheelchair, leading to more frequent need for maintenance (which was reported as not always promptly provided by health facilities). participants reported that ‘because of the roughness of the land surface’ in these areas, people use their wheelchairs only at home and use a wheelbarrow outside the home or alternatively they stay indoors most of the time. hence, activities outside the home were perceived as very costly. these challenges were exacerbated when public transport was inaccessible, an issue that was raised in most discussion groups and affected all life spheres. participants with high support needs (and particularly those with physical disabilities or blindness) have to pay their own transport fares and an additional fare for their assistant or an additional fare for their assistive device (wheelchair, guide dog). in some urban areas, participants explained that accessible buses are available, but only at specific time or on limited routes. although this was acknowledged as a step forward, the scarcity of these accessible buses results in extra costs for the person with a disability. one participant explained that in order to make use of these buses, he had to leave early for an appointment and spend the whole day at his destination until the accessible transport was on its return trip. this would create costs related to time as well as care and support. within the group of persons with visual impairment, an interesting outlier was reported. some people in one of the urban settings had access to specialised and subsidised transport. this specific group of people was enjoying cheaper transport than the general population. this transport enabled them to get to work and back, which meant that they were able to work and did not need to spend money on an assistant. ‘i pay r10 from chatsworth to umbilo for dial-a-ride. they fetch me from my house and they stop right outside our building. the driver makes sure that you have got out safely before he drives away. if you need it, he will even assist you to walk all the way into the building. but i am quite independent; i don’t need help to get into the building.’ (person with visual impairment, female, employed) for some disability groups, the costs associated with transport overlapped with security issues. for instance, in the groups of people with epilepsy and intellectual disabilities, participants reported that the risk of violence and abuse while using (or waiting for) public transport meant they always had to travel with an assistant or in private cars (if they could afford to buy a car). further, the cost of adaptation of vehicles had to be borne by the household. for others, the need for a driver or assistant created extra costs. ‘i can also take a taxi but i first used a train and they pickpocketed me. so that is why i am not using a train anymore. we now all take a taxi or a bus.’ (person with epilepsy, male, in learnership programme) transport needs and the need for assistance greatly depended on the available assistive devices and technology. from the discussions, it emerged that access to assistive devices not only decreased the need for (and cost of) assistance and support, but also increased the level of participation and ability to earn a living. for some groups (such as those with severe physical disabilities, those with low functioning autism and those who are deaf-blind), access to assistive devices and communication technology was described as ‘essential for access to life’, hence turning ‘being lonely at home’ into being part of society as an active member that engages via social media with friends and work colleagues. ‘you see that is how deaf-blind works. … on facebook they were telling me that they [his peers & colleagues] need me to support them they were like shouting at me … because i support the blue bulls [a rugby team] … they were shouting ‘why are you supporting the blue bulls’. we can communicate as the blind-deaf people… you don’t have to feel you are so lonely. that is just an example of what technology can do … so it opens the world it makes the world smaller and brings us together. unlike the deaf and blind people who are sitting at home no technology at all, they live there and do nothing until they die...’ (person who is deaf-blind, male, unemployed) participants explained that this kind of communication technology requires particular software as well as mobile data packages, a cost that cannot be covered by households who are poor. hence, access to participation in life for this group is determined by the available technology and income of the household. the discussion groups also covered the costs of participation in the workplace (for those persons with disabilities who are employed). across discussion groups, there was agreement that, except for those who were self-employed or for those employed in smaller or informal businesses, the costs of reasonable accommodation were paid by the employer. some participants reported that the employer’s duty to provide accommodation could lead to employers favouring persons with disabilities who ‘were more independent’ as they want to avoid the ‘extra salary’ for a full-time assistant that may be required by persons with severe disabilities. others reported on positive changes and provision of employment, despite additional costs. ‘we got people with disabilities into our place it’s mainly because majority are intellectually disabled, it’s attitude, there aren’t many physical costs that are attached to people with intellectual disabilities in the workplace. … i got two people here with intellectual disability working as general workers and if money was not an issue i can do with one but i don’t want to do two people’s jobs.’ (caregiver of person with intellectual disability, female, employed) the group of persons with psychosocial disability (mental health) indicated that few persons with this disability type disclose their condition, for fear of losing their job. these groups also explained that accommodation for persons with ‘psychosocial disabilities’ may require reconfiguring the work environment and working hours. the participants explained that reasonable accommodation in the workplace needs to be supported, on the one hand, by better disclosure of individual needs and, on the other hand, by greater sensitisation of the employer. the main additional out-of-pocket costs that were reported by participants related to travel to work. many persons with more severe disabilities travel with an assistant, need specialised transport or make use of private transport. the use of an assistant is closely linked to the availability of accessible transport to places of work. where accessible transport or subsidised, specialised services such as dial-a-ride or sukuma were available, individuals experienced transport costs that were similar to the general population. in addition, participants reported cases of additional cost being incurred through inaccessibility of information about change in transport routes. ‘the problem is when the routes change. the driver asks all the passengers: if he can change his route on that day [for whatever reason] and the deaf person does not hear. only later do you realize that the route has changed and then you have to get off and catch another taxi and it takes long and you pay double fares.’ (person who is deaf, female, unemployed) in order to enable meaningful participation in home, community and the workplace, we need innovations for universal design and reasonable accommodation, which target major cost drivers related to communication, housing, road infrastructure and transport. discussion through using a participatory design, this article highlights the voices of persons with disabilities and their perception of disability-related out-of-pocket costs in south africa. the study design has a number of limitations. firstly, it was conducted in a very short period of time (three months), which allowed little time for data collection and restricted the researchers to interview persons only in three different areas of south africa (gauteng, western cape and kwazulu-natal) and those disability groups that were identified in the inception workshop. this allowed us to narrow down the investigation but also leaves out experiences of persons from other disability groups (e.g. albinism, dyslexia). secondly, this article reports only on the qualitative part of the study and therefore only describes possible costs and is not representative for south africa as a whole. furthermore, current spending on disability-related costs for poorer socio economic groups is strongly curtailed by available income as well as limited knowledge about available goods and services. hence, it is very likely that the cost of fulfilling actual needs is far greater than currently reported in this study. the study reaffirms previous conclusions (groce et al. 2011) that the link between disability and poverty in an mic such as south africa is more nuanced and complex than previously anticipated. it reiterates that persons with disabilities are a diverse group with households facing different costs related to care and support, accessibility of essential services and participation in home, community and workplace. the ‘borders’ between these needs are ‘blurred’ and interrelated which creates additional challenges for policy makers and programmes. similar to other studies (banks & polack 2013; graham et al. 2013; mall et al. 2014; mitra 2006; mitra et al. 2011; palmer et al. 2015), this study identified costs that need to be addressed by a variety of role players (e.g. education, health, transport and social development). however, the results also suggest that planning to address economic vulnerability of persons with disabilities needs to also consider three different interlinked levels of care and support: (1) provision of care and support to enable survival and safety such as assistance, essential medical items and assistive devices, (2) provision of physically and financially accessible essential services (education and health) and (3) development of inclusive work and home environments that enable participation, in particular in income-generating activities. firstly, in mics, interventions targeting survival (e.g. life-saving medication) are often prioritised before interventions that are perceived to improve quality of life only. needs of disability (e.g. the provision of appropriate assistive devices and rehabilitation) are often seen as affecting quality of life and not survival. yet, the voices of persons with disabilities highlight this as a misconception. as our examples highlighted, the absence of assistance and support for some conditions may be as life-threatening as the absence of medication (for conditions such as for tb or hiv). for instance, a quadriplegic person can die of pressure sore-related complications if they do not receive the necessary care and support. similarly, a deaf-blind person without a translator is not able to communicate about his or her health and therefore cannot seek health care, which can lead to life-threatening situations. hence, prioritising the needs of people with disabilities in national programmes is therefore a necessity to address economic vulnerability as well as to reinforce the right to live. secondly, the need to improve access to essential services fits within current developments of the south african national health insurance (nhi), which embraces the sdg idea of universal health care access (murnane et al. 2013). approaches like the one proposed through ‘the ideal clinic’ concept need to better include elements of disability. for instance, the 2015 draft version of the south african ideal clinics manual includes a checklist speaking to the physical accessibility of clinics leaving out any other cost such as transport, sign language interpretation, linkages to rehabilitative services or provision of repair of assistive devices (south african department of health 2015). the 2016 version of the ideal clinics manual does not include this list and does not mention disability (south african department of health 2016). this development is in disjunction with the introduction of the new framework and strategy on disability and rehabilitation services (south african department of health 2015a), which was released at the end of 2015. this framework clearly identifies, amongst other things, the inaccessibility of health services and school settings as well as the need to improve and integrate disability and rehabilitation services. it is, however, not speaking about issues of some subgroups such as those with learning or intellectual disabilities (south african department of health 2015a). a review of the new developed policies with regard to their inclusion of disability services and accessibility seems to be urgently needed. hence, these two developments should be taken up as an opportunity to review how care and support, rehabilitation and assistive devices are provided, maintained and financed within the public health care system. it is an opportunity to review and re-engineer health care and related services in light of the crpd concepts of ‘universal design’ and ‘reasonable accommodation’. this process needs to consider which products and services are needed for survival and access and whether these are included in the benefits package under the new nhi. thirdly, participation in society and, in particular, in income-generating activities is key to addressing economic vulnerability. in the context of high levels of unemployment, this may be neglected. however, recent research (banks & polack 2013; international labour office 2009) builds the argument that exclusion is costly to society at large and that exclusion reduces productivity and shifts costs to the person with disabilities and their households. our study reinforces this argument. hence, countries need to promote disability-inclusive work and home environments for their overall growth but also to economically protect households of persons with disability. this protection needs to be linked to individual care and support needs and includes a number of measures such as prioritisation in employment, accessible support services such as transport and housing. in order to reduce economic vulnerability, south africa has introduced a number of social protection mechanisms in the form of grants as well as a tax rebate system that accounts for disability-driven costs. the current grant system includes a disability grant and a care dependency grant. the disability grant currently includes two sets of eligibility criteria: the disability determination itself and an income threshold. a number of authors have reviewed the impact of the grant and identified that it reduces income poverty (but not to an equal level) for some groups but leaves out groups with less visible disabilities (jelsma et al. 2008; johannsmeier 2007; mitra 2010). authors have also described the use of the grant which covers costs of basic living for the whole family as well as costs specifically related to the person with disabilities (booysen 2004; case 2005; de koker et al. 2006; macgregor 2006). this literature also highlights that the grant is often not used for disability-specific out-of-pocket costs (de koker et al. 2006). hence, some authors highlight the need to discuss the purpose of the grant. in other words, if the disability grant is thought to be more than a poverty grant, it needs to respond to the opportunity costs (income poverty) as well as the increased care and support costs (for survival, access and participation). although previous studies particularly discuss who has (and has not) access to social protection mechanisms, such as the disability grant, and what the grant is being used for, our study suggests that the current ‘one size fits all’ approach (e.g. disability grant) does not respond to the diversity of needs and costs. this creates additional challenges for policy makers who need to design social protection mechanisms which are feasible to administer and which target diverse needs. how best to do this in an mic is even internationally still a matter of discussion (international labour office & international disability alliance 2015). much more research is needed to describe and identify the costs related to the diverse needs of care and support for the diverse group of persons with disabilities to inform how mics can move towards addressing disability related-poverty in line with the golden standard laid out in the crpd and new sdgs. acknowledgements the authors would like to acknowledge the support and efforts of the south african department of social development (dsd) and the un programme on the rights of persons with disabilities (unprpd) during this study. they would also like to thank unicef for their human as well as financial support. furthermore, they would like to thank all participants and support staff. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.h.h. contributed to the conceptualisation, fieldwork, analysis, and first and final draft. n.d. contributed to the conceptualisation, fieldwork, analysis and parts of the article. s.n. and s.p. contributed to the analysis and parts of the article. references banks, l.m. & polack, s., 2013, the 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from a pilot study, dsd, unicef, johannesburg. ucf, anova health institute & wrhi, 2015, south african health monitoring survey (sahms), final report, the integrated biological and behavioural survey among female sex workers, south africa 2013–2014, ucsp, san francisco, ca. united nations, 2015, the millennium development goals report, viewed 1 december 2015, from http://www.un.org/millenniumgoals/2015_mdg_report/pdf/mdg%202015%20rev%20(july%201).pdf united nations, 2008, convention on the rights of persons with disabilities united nations, new york, viewed 1 september 2016, from http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf world bank, 2015, middle income countries programme, viewed 12 november 2015, from http://www.worldbank.org/en/country/mic/overview world health organisation, 2011, world disability report, world health organisation, malta. abstract background research methods and design results discussion what is new about this study limitations conclusion acknowledgements references about the author(s) jc allen ingabire department of surgery, college of medicine and health sciences, university of rwanda, kigali, rwanda department of surgery, university teaching hospital of kigali, kigali, rwanda aimee stewart department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa jean baptiste sagahutu department of physiotherapy, college of medicine and health sciences, university of rwanda,kigali, rwanda gerard urimubenshi department of physiotherapy, college of medicine and health sciences, university of rwanda,kigali, rwanda georges bucyibaruta department of epidemiology and biostatistics, faculty of medicine, imperial college london, united kingdom sonti pilusa department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa carine uwakunda department of surgery, kibagabaga level ii teaching hospital, kigali, rwanda didace mugisha department of environmental, college of medicine and health sciences, university of rwanda, kigali, rwanda leontine ingabire department of nursing, college of medicine and health sciences, university of rwanda, kigali, rwanda david tumusiime department of physiotherapy, college of medicine and health sciences, university of rwanda,kigali, rwanda citation allen ingabire jc, stewart, a., sagahutu, j.b., urimubenshi, g., bucyibaruta, g., pilusa, s. et al., 2024, ‘prevalence and levels of disability post road traffic orthopaedic injuries in rwanda’, african journal of disability 13(0), a1251. https://doi.org/10.4102/ajod.v13i0.1251 original research prevalence and levels of disability post road traffic orthopaedic injuries in rwanda jc allen ingabire, aimee stewart, jean baptiste sagahutu, gerard urimubenshi, georges bucyibaruta, sonti pilusa, carine uwakunda, didace mugisha, leontine ingabire, david tumusiime received: 10 may 2023; accepted: 23 oct. 2023; published: 18 jan. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: prolonged disability resulting from road traffic injuries (rtis) contributes significantly to morbidity and disease burden. a good understanding of the prevalence and the level of disability of orthopaedic injuries in developing countries is crucial for improvement; however, such data are currently lacking in rwanda. objectives: to determine the prevalence and levels of disability of 2 years post-road traffic orthopaedic injuries in rwanda. method: a multicentre, cross-sectional study from five rwandan referral hospitals of 368 adult rti victims’ sustained from accidents in 2019. between 02 june 2022, and 31 august 2022, two years after the injury, participants completed the world health organization disability assessment schedule (whodas 2.0) questionnaire for the degree of impairment and the upper extremity functional scale and lower-extremity functional scale forms for limb functional evaluation. descriptive, inferential statistics chi-square and multinomial regression models were analysed using r studio. results: the study’s mean age of the rtoi victims was 37.5 (±11.26) years, with a sex ratio m: f:3: 1. the prevalence of disability following road traffic orthopedic injury (rtoi) after 2 years was 36.14%, with victims having whodas score > 25.0% and 36.31% were still unable to return to their usual activities. age group, severe kampala trauma score and lack of rehabilitation contributed to disability. the most affected whodas domains were participation in society (33%) and life activities (28%). conclusion: the prevalence and levels of disability because of rtoi in rwanda are high, with mobility and participation in life being more affected than other whodas domains. middle-aged and socio-economically underprivileged persons are the most affected. contribution: this study showed that a good rehabilitation approach and economic support for the rti victims would decrease their disabilities in rwanda. keywords: prevalence; disability; road traffic injuries; rehabilitation; whodas 2.0. background long-term disability post road traffic injury (rti) is a public health problem that devastates individuals, and has an enormous societal and economic impact in many countries (gathecha et al. 2018; world health organization 2018). each year 50 million people are injured, 1.2 million worldwide die from rtis, 30% live with a permanent disability, and 14% are unable to return to work (alemany, ayuso & guillén 2013; hyder, puvanachandra & allen 2013; oluwaseyi & gbadamosi 2017). limb injuries following road traffic crashes are more frequent than other injuries ranging from 36% to 48% (chichom-mefire et al. 2018). the international classification of functioning, disability and health (icf) framework defines disability as ‘difficulty in functioning at the body, person, or societal levels, in one or more life domains, as experienced by an individual with a health condition in interaction with contextual factors’ (perenboom & chorus 2003). the world health organization disability and health assessment schedule (whodhas 2.0) is the most widely accepted tool designed to evaluate disability from the icf and comprises 12 or 36 items scored over 100 svanborg et al. 2022). long-term disabilities mainly affect the working-age group in low and middle-income countries (lmics), impairing individual lives, society, and the economy (grimm & treibich 2010; selassie et al. 2008; üzümcüoǧlu et al. 2016). the prevalence of rti is much higher in lmics with complications than in developed countries (de jongh et al. 2017; world health organization 2018). these complications are mainly physical, social and cognitive, affecting the victims of rtis, their families, and society (oluwaseyi & gbadamosi 2017; sousa et al. 2016). a house survey carried out in sierra leone, rwanda, nepal, and uganda found that more than 38.5% of all rti victims had disabilities following these injuries, with head and extremity injuries being more predominant (nabeel et al. 2018). disabilities following rtis in developing countries are influenced by the severity of the injury and economic factors in the concerned country, especially for the victims’ families (gathecha et al. 2018). in many developing countries, the prevalence of road traffic disabilities depends on the country, ranging from 1.2% to 14.0% of all the victims mostly from modest-income families (glèlè-ahanhanzo et al. 2018; hoang et al. 2020; lin et al. 2013; sousa et al. 2016). even though the prevalence and pattern of long-term disabilities in lmics are known in some countries, some are still without data (banks, kuper & polack 2017). rwanda is in sub-saharan africa with a population of more than 13 million; the capital is kigali. the rwanda national institute of statistics 2022 census estimated that the prevalence of disability in rwanda was 5%, comprising congenital, genocide against the tutsi victims, and other disabilities, including rtis national institute of statistics of rwanda. (2023). in 2019, the rwanda national police reported 4661 rtis, with 700 fatalities. still, no data exist on the prevalence and level of disability of long-term disabilities attributed to rti. studies have shown that better outcomes for these injuries depend on medical care, rehabilitation, and social and economic support, which are still challenging in many lmics (grimm & treibich 2010). inadequate immediate and rehabilitative care post-injury negatively impacts the victims’ functional outcome and social reintegration and is a challenge in lmics (faux et al. 2015; neagu 2020; üzümcüoǧlu et al. 2016). in rwanda, there are many rti victims (nabeel et al. 2018), a low number of rehabilitation centres, and insufficient rehabilitation personnel at health facilities affecting the outcome of the victims (locke et al. 2020). to develop appropriate interventions and compensations for long-term disabilities post-rtois, we must understand the prevalence and the level of disabilities following road traffic orthopaedic injuries (elrud et al. 2019). this study aims to determine the prevalence and levels of disability of 2 years post rtoi in rwanda. research methods and design study design and study settings a multicentre cross-sectional study was undertaken to analyse the hospital-based data on road traffic orthopaedic injuries that occurred in 2019, and were treated at the five rwandan referral hospitals. these hospitals are referral and teaching hospitals with emergency, orthopaedic, and rehabilitation departments. data were collected between 02 june 2022 and 31 august 2022 from the centre hospitalier universitaire de kigali (chuk), the rwanda military hospital (rmh) and king faisal hospital (kfh), all located in kigali city but which receive patients from across rwanda. the two other hospitals are: centre hospitalier universitaire (chub) in the southern province and ruhengeri hospital (rh) in the northern province. study population and sample size the study population comprised 2019 rtoi survivors aged 18 years and above admitted to the above-mentioned five hospitals for both upper and lower limbs injuries. we used krejcie and morgan’s formula (fincham & draugalis 2013) for sample calculation and random sampling for sample size. according to the records of these five hospitals, around 4600 cases post-rtis with 1986 orthopaedic injuries were admitted during the selected study period. the sample size representative of these rtoi victims was 368. we consulted the hospital records from the emergency departments, outpatients and admission for patients’ demographics and contacts, details of the injury pattern, and the length of stay in the hospital. we excluded participants who were not oriented to time and space, and could not respond to the questionnaire and patients with injuries other than orthopaedic injuries. those fulfilling the inclusion criteria of being above 18 years and having an orthopaedic traffic injury in 2019 were contacted via telephone for their demographic details and requested to come to the hospital for further evaluation. psychometric properties of the instruments in this study, we used three instruments upper extremity functional scale (uefs), lower-extremity functional scale (lefs), and whodas 2.0, known as patients reported outcomes. using the who guidelines of translation (tietschert et al. 2022), the questionnaires were translated from english to kinyarwanda by two language experts and back to english by two other language experts to address the cultural and linguistic equivalence. thereafter, the questionnaires were sent to experts in orthopaedic and rehabilitation for their opinion on the quality of translation, clarity, and suitability for the rwandan participants. uefs was used in the evaluation of the upper extremity functional impairment with 20 questions, which demonstrated excellent psychometric properties, including good internal consistency (cronbach’s alpha > 0.83) and has been validated in many languages (pransky et al. 1997). lefs assesses the subjective functional activity performance of daily living in the lower extremities. it was developed and validated for various lower extremity conditions based on the who model of impairment, disability and handicap. the lefs is expected to accurately measure even minor effects of impaired activity performance experienced by participants with lower extremity musculoskeletal dysfunction and has been validated in the kinyarwanda language (tumusiime et al. 2014). uefs scale and lefs are self-reported patient questionnaires containing 20 questions about a person’s ability to perform everyday tasks and grade the severity level. the total score is 80 points for all 20 activities computed to 100, where the minimum score is 0, and the maximum score is 100 – the lower the score, the more significant the disability. the classification of functionality level is 0% to 25% – trace functional, 26% to 50% – very poor, 51% to 75% – poor, 76% to 89% – partial functional, and 90% to 100% – fully functional. the whodas 2.0 is a standard multidimensional questionnaire applicable to measure the level of disability across many conditions and has been validated in several languages. therefore, this schedule has been translated into 16 languages in 14 countries, and has been reported to have adequate internal consistency, construct and discriminate validity (svanborg et al. 2022). the patient’s overall disability was evaluated using whodas 2.0, an assessment tool developed by the who to measure disability and functional impairment under the international classification of functioning, disability and health (icf) (svanborg et al. 2022). the whodas 2.0 is a self-reported tool, administered to participants aged 18 years and above. the severity of impairment is determined based on the highest qualifier of body functions and structural components of the icf (no disability: 0% – 4%, mild: 5% – 24% impairment, moderate: 25% – 49% impairment, severe: 50% – 95% impairment, complete: 96% – 100%). the kampala trauma score (kts) (weeks, juillard & monono 2014), which was computed as part of the clinical examination to forecast the patient’s prognosis at the time of admission, was used to assess the extent of the injury. the patient’s age, systolic blood pressure, respiration rate, neurological condition, and existence of significant injuries are added up to determine this score. the kts was then categorised as mild, moderate, or severe, and used to forecast the patient’s prognosis (haac et al. 2015). procedure among 1986 orthopaedic injuries, we reached out to 1721 on the phone, where some have died, or their phones are out of line. after sampling, participants were invited to the hospital to assess their current status after almost 2 years post-rtois. the severity of the injury was evaluated using the kts, which is classified as mild, moderate and severe. for limb function outcome evaluation, we used the uefs (pransky et al. 1997) and lefs (binkley et al. 1999). we asked the participants to consider how much their impairments interfered with their lives in the last 30 days and to answer on a 5-point response scale from 0 to 4 (no difficulty-extreme difficulty). the data collectors helped the participants to fill in the questionnaire if they could not write. we calculated the average score of each whodas 2.0 domain, understanding and communicating, getting around, self-care, getting along with others, life activities, and social participation. the participant’s socioeconomic status (ubudehe) was collected according to the rwandan government classification, where category i includes impoverished and vulnerable citizens. category ii includes citizens who can afford some form of rented or owned accommodation but are not gainfully employed and can only afford to eat once or twice a day. category iii includes citizens who were gainfully employed or employers of labour. category iv are citizens who are chief executive officers of big businesses, full-time employees with organisations, industries or companies, government employees, owners of shops or markets and owners of commercial transport vehicles or trucks (sabates-wheeler et al. 2015). this study has three outcome variables: the prevalence of long-term disabilities, the severity of the disability, and the level of functionality 2 years after rtoi. the explanatory variables include: demographic data, injury category, length of hospital stay, and type of road user (cyclists, drivers, motorcyclists, passengers, and pedestrians) and return to work and rehabilitation. data management and analyses data were collected using the questionnaires, entered into the computer by a google form data entry mode, and analysed using the r studio. we performed a descriptive analysis of the patient-reported outcome measure scale (whodas 2.0, uefs, lefs). categorical variables were summarised using counts and percentages, continuous variables with means and standard deviations (sd). we used the kruskal–wallis and wilcoxon–mann whitney tests to compare three or more and two independent categories, respectively. to evaluate the association between independent variables and whodas 2.0 scores, we constructed a multinomial regression model to assess the odds ratio between whodas 2.0 scores. we considered p < 0.05 to be statistically significant. ethical considerations we obtained the ethical approval to conduct the study from the university of rwanda, college of medicine and health sciences institutional review board (18/cmhs irb/2022). the rwanda national research committee operating in the ministry of health approved this study (nhrc/2022/prot/014) and the collaboration with the rwanda biomedical center (5535/rbc/2022) injury department. we obtained the local ethical approvals from the five hospitals’ ethics committees; chuk (ec/chuk/051/2022), chub (rec/uthb/089/2022), rh (313/rrh/dg/2022), kfh (ec/kfh/015/2022), rmh (rmh irb/027/2022). all participants signed the consent form before enrolment into the study, and all data were kept confidential for only the study’s purposes. results demographic characteristics of the participants in total, there was 4661 rtis in 2019, 1986 patients sustained orthopaedic injuries, and we analysed 368 participants. of these, 64.5% (238 cases) were recruited from chuk. the mean age of our participants was 37.5 ± 11.26 years, predominant in the age group of 31–50 years, and age was associated with the whodas score (p = 0.005). males were predominant at 74.25% (sex ratio m: f:3: 1), and sex was not associated with the disability level (p = 0.478). the prevalence of disability was 35.8% (132/368), with the whodas score from 25% – 100% in the total sample size, with 63.2% of no disability (0% – 24%). only 7.58% had no education level and were found to be associated with the level of disability (p = 0.005). most of our participants resided in kigali city (46.34%), and the residence is statistically significant towards the disability level (p = 0.041). occupations of the rtoi survivors were also associated with their recovery (0.001); 154 (41.73%) of them were in business, and 107 (29%) were in the informal sector (no fixed job). most of our participants were in category iii of socioeconomic class 227 (61.52), followed by category ii (33.06%), and 64.66% of injuries involved motorcycles as cause where the socioeconomic class is associated with disability outcome (p = 0.005) (table 1). table 1: demographics profile of participants versus whodas score. clinical factors in post-rtois, half of our participants were managed within 1 day (49.32%), with a mean of 30 days and 42.01% were treated by open reduction and internal fixation (orif). the majority were discharged within 14 days (40.38%). our findings show that kts is associated with the patient’s outcome after the accident (p = 0.041), and 246/368 (66.84%) patients had moderate kts. after injury management, 37.13% of the victims could not undergo any rehabilitation management, and this was associated with the patient outcome (p < 0.001) (table 2). the uefs score had a mean of 93, and the lefs score had a mean of 75 in the total sample size. comparing the lefs and the level of disability according to whodas total score, it is statistically significant (p < 0.001)) and also significant for uefs (p = 0.006). table 2: clinical factors versus whodas. level of disability considering the whodas score, the minimum score was 0, maximum of 90, with a mean of 22.91. most participants had mild impairment (38.31%). the overall disability was at 35.86%, combining moderate and severe (table 3). table 3: level of functionality upper extremity functional scale, lower-extremity functional scale versus whodas. among the 368 patients, the overall disability score of all domains was mild (22.9), the most affected domain was life activities with 26.46 and participation in life with 23.8. all participants were doing well in terms of cognition (6.2) and getting along with people around (5.9) (table 4). the mean days in the past 30 days that the participants had difficulties in their daily life was 16.5, and the mean days that they could not carry out usual activities or work because of any health condition was 2. we also recorded 2.5 days of reduced usual activities or work because of injury complications. after 2 years of the injury, 134/368 (36.31%) victims of the rtis were still unable to return to work or perform everyday activities. table 4: average score of domains and whodas 2.0. factors associated with disability we used a multinomial regression model for the relationship between whodas 2.0 scores and associated factors. all associated factors were independent variables of disability: age group, sex, socioeconomic status, kts, rehabilitation and length of hospital stay. among these factors, age groups and rehabilitation were significant predictors of disability, with a high odds ratio. the group of > 50 years tends to have 12 times more severe disabilities than the rest. the patients who did not undergo rehabilitation were exposed to severe disability 5.7 times more than the other group (table 5). we have found that among those younger than 30, the probability of having no disability is 36.9%, mild 49.0%, moderate 9.8% and severe 4.3%. contrary to a disability, the probability increases in the age group of 30–50 years to > 50 years from 0% to 20% (figure 2). table 5: odd ratio (multinomial logistic regression/ref level: no disability). the probability of the disability is 20% in socio-economic category i, decreasing to 10% for socio-economic category ii and almost 5% for socio-economic category iii (figure 1). the probability of getting the disability increases with the kts from 0 when there are mild kts to 20% when the patient has severe kts. also, the probability of no disability decreases from 80% for patients with minor injuries to 20% for ones with severe kts (figure 1). the patients who had some rehabilitation sessions improved for moderate and severe disabilities, with almost 10% of probability in the non-rehabilitation group (figure 1). figure 1: probability of disability versus age group, socioeconomic status, kampala trauma score (kts) and rehabilitation. according to the whodas domains, the majority of our participants were not disabled 2 years after a road traffic accident for getting along with people (83%), understanding and communication (81%), self-care (66%), and getting around or mobility (53%). some whodas domains were more affected than others, such as participation in society, where 33% were severely disabled and life activities (28%) (figure 2). figure 2: disability level according to the whodas 2.0 domains. discussion our study highlights the magnitude of orthopaedic injuries among rti victims in rwanda 2 years after the trauma, where a third of them sustained long-term disabilities. we showed that half of the rtis in rwanda are limb trauma, as shown in other studies from lmics (access 2018; mousazadeh et al. 2021). many factors were associated with disability among the survivors, including demographics, the clinical status of the patient post-injuries, and environmental factors. age was found to be a contributing factor to the disability level, and one-third of the victims were male. worldwide rtis victims are in the working age group (gheshlaghi & shari 2020; gopinath et al. 2015; marquez 2013), and this was the same finding in our study, where the mean age of our participants was 37.5 years, predominantly in the age group of 31–50 years. in most studies, especially in sub-saharan africa, males are the most involved in rtis, explained by their high level of mobility (ingabire et al. 2015; kim et al. 2016; lugo et al. 2013; o’hara et al. 2018). many studies have shown that the working age group is the most affected by rtis, which was confirmed in our study, with less than 5% being unemployed (davey et al. 2019; gane et al. 2019; herrera-escobar et al. 2018). more than half of the participants were in the socioeconomic class category iii, composed of people who were gainfully employed or were even employers of labour. these figures explain how accidents are associated with a high rate of movements the victims perform. the leading cause of accidents was motorcycles, followed by a motorcar. in 2012, rwanda accounted for more than 47,622 motorcycles, more than a half operating as moto-taxi nickenig vissoci jr et al. 2020. lower limb injuries and polytrauma patients dominated our sample, which is consistent with lmic studies showing higher rates of lower limb injuries in rtis (chauhan et al. 2017; mahdian et al. 2017). of these orthopaedic injuries, more than half were managed by operation, either open reduction and internal fixation or external fixation, and the mean hospital stay was 30 days. we observed extended hospital stay for polytrauma patients who required more interventions. injuries to the upper extremities evaluated by the uefs had good outcomes compared with those of the lower extremities evaluated by the lefs. in their systematic review, rissanen, berg and hasselberg (2017) found the same as our findings, where patients with lower limbs do poorly compared with the upper extremities. this was explained by the lower limb injuries’ severity and management (rissanen et al. 2017). the literature stipulates that the goal of each orthopaedic injury management is to restore the functional outcome, which is achieved by rehabilitation (heathcote, wullschleger & sun 2018). for our study, 37% of the prescribed rehabilitation was not performed after injury management, primarily because of the long distance between their homes and the district hospitals, and financial issues. the same findings were observed in other studies from lmics where access to rehabilitation ranges from 5% to 59%, and in many countries, rehabilitation centres are lacking (chatukuta et al. 2022; joiner et al. 2022; odland et al. 2022). conducting the univariate analysis for both the demographic (age, level of education, residence, occupation) and clinical factors (kts, diagnosis at admission, time before management, intervention, rehabilitation, uefs, lefs), most of the variables independently contributed to the level of disability p < 0.05 apart from gender. in their study, haider et al. (2018) in the united states found almost the same results where demographics (female sex, low education level) play a significant role in the long-term outcome of rti victims (haider et al. 2018). many studies in lmics share the same picture as our results, with sex, advanced age, rural domicile, and low education level being the independent variables to the disability post-rti (glèlè-ahanhanzo et al. 2018; lin et al. 2013; locke et al. 2020; mannocci et al. 2019). the multivariate analysis for this study showed that age group, injury severity score and rehabilitation were highly associated with disability. pélissier et al. (2017) found that age, injury severity, and post-hospital follow-up are the main predictors of patients’ recovery after 3 years of injury (pélissier et al. 2017). glèlè-ahanhanzo et al. (2018) in their study in benin, identified the same factors with lower limb injuries and rural domicile being among them (glèlè-ahanhanzo et al. 2018), similar to what alharbi et al. (2019) have identified in their review. the prevalence of long-term disabilities post-rtoi is poorly known or under-reported in developing countries. our study’s overall prevalence of disability was 35.8%, according to the whodas categorisation from moderate to extreme disability, but we did not find extreme disability (95% – 100%). these figures are higher than what was reported by who report estimating the worldwide disability (15%) and other studies from high-income countries such as european countries ranging from 2.2% to 15.0% (faux et al. 2015; who 2004). our findings were similar to data from a study conducted in india (rocha et al. 2016) with 50% of disabilities. chauhan et al. (2017) in their study from india, found that the prevalence of disability was 13.5% eight months after the injury. glèlè-ahanhanzo et al. (2018) reported a disability of 10.0% in benin post-rtis. even though the method of disability evaluation differs from study to study, many studies show that the disabilities post rtis are high in lmics. considering the different domains, our participants were most affected in their participation in life, life activities and mobility, where the level of impairment ranged between 19% and 36%. our study highlights the magnitude of long-term disabilities following road traffic orthopaedic injuries affecting the victim’s daily activities. gray et al. (2018) in a study performed in australia, reported 10% of failure to return to work 2 years after the accident, and gabbe et al. (2017) in a cameroun study, reported 83% of the return to work (gabbe et al. 2017; gray et al. 2018). our results are higher than those of these studies, where 36.31% of the rti victims were still unable to return to work or perform everyday activities after 2 years of the injury. even for the ones who joined their everyday activities, the mean days in the past 30 days that the participants had difficulties in their daily life was 16.5. the mean days they could not carry out usual activities or work because of any health condition was 2 and 2.5 days of reduced usual activities or work because of injury complications. what is new about this study our study has determined the prevalence and the level of disability of long-term disability following road traffic orthopaedic injury rtoi in rwanda. our findings revealed that the working age is more affected and that a large number lack a rehabilitation follow-up, and a significant number are unable to return to their daily activities after the injuries. this study will serve as the basis for further studies determining the participation in the life of people living with long-term disability following road traffic orthopaedic injuries in rwanda and their quality of life after 2 years of the accident. these figures will help the stakeholders develop a policy to improve post-rtis functional outcomes, especially a rehabilitation approach that can quicken post-rtoi functional outcomes. limitations our study has shown several limitations, including 2 years between the injury and patient outcome assessment, where some patients were not reached by phone. using secondary data for baseline also was a challenge. some missing information in the recording was a limitation that limited the generalisability of our findings. conducting a cross-sectional study later than a cohort study has also caused missed steps in the patient’s follow-up. we recruited patients involved in the accident in 2019, the year before the coronavirus disease 2019 (covid-19) pandemic, which limited the regular follow-up of the patients, especially those recruited at the end of 2019. centre differences also can be a limitation in terms of the homogeneity of the sample size. conclusion the 2-year prevalence and level of disability because of rtoi in rwanda is higher than other reported data from high-income countries but comparable to lmics. middle-aged and socioeconomically underprivileged persons are the most affected. disability because of road traffic accidents is related to a greater demand for social and/or healthcare support, problems of accessibility and/or commuting, and significant changes in economic activity. this study has shown that earlier management and rehabilitation are critical for better functional outcomes. we recommend further studies exploring clinical and socioeconomic factors at each patient treatment stage. furthermore, prospective, and randomised clinical trials can find more about the cause of disabilities and influencing factors. acknowledgements the authors would like to acknowledge everyone who supported and contributed to this study, especially the participants and research assistants from the five referral hospitals especially joel nshumuyiki, the chief research assistant. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.a.i., j.b.s., a.s., d.t., g.u., and g.b. participated in all stages of this article, from the study design, methodology, grant writing, data collection, analysis and article writing. s.p., c.u., d.m. and l.i. participated in the study design, methodology, grant writing, data collection, and article writing. funding information this research (or intial of the fellow) by j.a.i was supported by the consortium for advanced research training in africa (carta). consortium for advanced research training in africa is jointly led by the african population and health research center and the university of the witwatersrand and funded by the carnegie corporation of new york (grant no. g-19-57145), sida (grant no.: 54100113), uppsala monitoring center, norwegian agency for development cooperation (norad), and by the wellcome trust [reference no. 107768/z/15/z] and the uk foreign, commonwealth & development office, supported by the developing excellence in leadership, training and science in africa (deltas africa) programme. the statements made and views expressed are solely the responsibility of the fellow. this research also was funded by the university of rwanda through the sida open grant 2021–2023. data availability data supporting the study’s findings are available on request from the corresponding author j.a.i the data are not publicly available because of ethical data transfer restrictions of irb that could compromise the privacy of research participants. disclaimer the views and opinions expressed in this article 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traffic crash: a literature review’, transportation research part f: traffic psychology and behaviour 40, 1–13. https://doi.org/10.1016/j.trf.2016.02.002 weeks, s.r., juillard, c.j. & monono, m.e., 2014, ‘is the kampala trauma score an effective predictor of mortality in low-resource settings? a comparison of multiple trauma severity scores’, world journal of surgery 38(8), 1905–1911. https://doi.org/10.1007/s00268-014-2496-0 world health organization (who), 2004, disability and rehabilitation. status review of disability issues and rehabilitation services in 29 african countries, pp. 1–76, world health organization, geneva. world health organization, 2018, global status report on road safety 2018: summary, world health organization, geneva. abstract introduction methods results discussion limitations future studies conclusion acknowledgements references about the author(s) karen h. fung school of rehabilitation, université de montréal, canada marie enfant rehabilitation center, sainte-justine university hospital research center, canada paula w. rushton school of rehabilitation, université de montréal, canada marie enfant rehabilitation center, sainte-justine university hospital research center, canada rachel gartz rehabilitation science & technology, university of pittsburgh, united states mary goldberg rehabilitation science & technology, university of pittsburgh, united states human engineering research laboratories, va pittsburgh healthcare system, united states maria l. toro department of physiotherapy, universidad ces, colombia nicky seymour motivation charitable trust, south africa jonathan pearlman rehabilitation science & technology, university of pittsburgh, united states human engineering research laboratories, va pittsburgh healthcare system, united states citation fung, k.h., rushton, p.w., gartz, r., goldberg, m., toro, m.l., seymour, n. & pearlman, j., 2017, ‘wheelchair service provision education in academia’, african journal of disability 6(0), a340. https://doi.org/10.4102/ajod.v6i0.340 original research wheelchair service provision education in academia karen h. fung, paula w. rushton, rachel gartz, mary goldberg, maria l. toro, nicky seymour, jonathan pearlman received: 15 nov. 2016; accepted: 21 june 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: an estimated 70 million people with disabilities need wheelchairs. to address this global crisis, the world health organization (who) proposed an eight-step wheelchair service provision model to ensure service quality regardless of resource setting. the international society of wheelchair professionals (iswp) aims to facilitate the integration of the who eight-step model into professional rehabilitation programmes. objective: to develop an enhanced understanding of the current wheelchair service provision education provided in professional rehabilitation programmes worldwide. methods: in a cross-sectional design, an online survey was distributed to iswp contacts of educational institutions. quantitative responses were analysed through summary statistics and qualitative answers were analysed by content analyses. when relevant, educational institutions were stratified into resource settings. results: seventy-two representatives of educational institutions in 21 countries completed the survey. wheelchair content was taught in 79% of represented institutions, of which 75% of respondents reported using original course material, 10% of respondents used who wheelchair service training packages and 15% of respondents used other available resources. the majority of educational institutions teaching with their own wheelchair-related course material taught ≤ 20 hours. fourteen of the 15 respondents without wheelchair education, expressed an interest in integrating wheelchair education into their academic curricula. conclusion: the majority of the educational institutions teach wheelchair education; however, there is great variability in what and how it is taught and evaluated. the results demonstrate the need for more in-depth investigation regarding the integration process of wheelchair education in educational institutions, with the ultimate goal of improving wheelchair service provision worldwide. introduction the world health organization (who) estimates that there are 70 million people worldwide who require a wheelchair for mobility (world health organization 2008). according to the jhpiego corporation, the percentage of demand met for wheelchairs in low-resourced countries is often below 5% (jhpiego corporation 2015). even for the people who do have wheelchairs, a significant number use poorly fitting or inappropriate wheelchairs, which may lead to secondary injuries and to a high likelihood of abandoning the technology (jhpiego corporation 2015). the wheelchair service provider is tasked with providing a wheelchair that meets the needs of the user in relation to the user’s environment and daily activities, which often includes complex postural support and pressure relief. according to the world report on disability, many countries have an unequal geographic distribution of rehabilitation professionals (world health organization 2011), and thus, the profession of wheelchair service providers may vary geographically. to accommodate for the lack of rehabilitation professionals in less-resourced settings, the who has suggested using existing personnel to deliver wheelchair services, including community healthcare workers, community-based rehabilitation workers, nurses, physical therapists, occupational therapists, orthotists and prosthetists (world health organization 2011). depending upon the profession and the setting, wheelchair service provision education may be provided by non-governmental organisations or by health professional academic programmes, with variations among educational programmes. indeed, lack of adequate training has been identified as a major factor in the lack of appropriate wheelchair provision in less-resourced settings (world health organization 2011) and also high-resourced settings (hrss) (fifield & fifield 1997; kanny & anson 1998; lenker 1998). university professional programmes in occupational therapy, physical therapy, prosthetics and orthotics are governed by organisations at various levels. for example, occupational therapy programmes at canadian universities are approved at an international level by the world federation of occupational therapists (2016) and are supported nationally by the association of canadian occupational therapy university programs (2016) who work in conjunction with the canadian association of occupational therapists (2012) to achieve and uphold education standards. scope of practice is determined by provincial acts and guided in part by the profile of occupational therapy practice in canada (canadian association of occupational therapists 2012). the need to navigate organisations at various levels when developing curricula is similar across occupational therapy, physical therapy and orthotics and prosthetics and scope of practice regarding a profession’s role in the wheelchair service delivery process is often influenced by the geographic location of the university. one of the challenges with respect to curriculum development is the scope of each of these professions, where wheelchair service delivery is only one of many content areas that need to be included within the university programmes. even within occupational therapy alone, the inclusion of wheelchair content in curricula is mandated in some countries (e.g. the united states), but not in others (e.g. canada). the recent who recommendation of an eight-step wheelchair service provision process (world health organization 2008) has the potential to guide university curriculum development in this area of practice. the eight steps, including (1) referral and appointment, (2) assessment, (3) prescription, (4) funding and ordering, (5) product preparation, (6) fitting, (7) user training and (8) maintenance, repairs and follow-up, were developed to ensure appropriate wheelchair service provision to any person in any setting. the who has subsequently developed wheelchair service training packages (who wstp) at the basic, intermediate, manager and stakeholder levels, of which various components are available in multiple languages (world health organization 2012, 2013, 2015). these packages include open-access training materials with resources such as training manuals, participant workbooks, presentations, videos and posters. use of the who eight-step wheelchair service provision model has demonstrated positive outcomes (toro, eke & pearlman 2016). other resources may be used to complement the who’s eight-step process, including the rehabilitation engineering & assistive technology society of north america practice guidelines that reflect these eight steps (arledge et al. 2011), the wheelchair skills program, which focuses on wheelchair skills testing and training (components of steps 2 and 7) (kirby et al. 2016a) and the wheelchair maintenance program (steps 7 and 8) (toro et al. 2017). recognising the multifaceted challenges associated with integrating new content into academic curricula (i.e. the who eight-step wheelchair service provision model), the international society of wheelchair professionals (iswp 2016) has formed a committee dedicated to supporting the integration of wheelchair service provision content into educational programmes across highand low-resourced settings (lrss). the ultimate goal is to ensure that everyone who needs a wheelchair receives an appropriate one and is trained to use it and maintain it. increasing the number of professionals trained in appropriate wheelchair service provision will help to achieve this goal. at present, there is a paucity of knowledge regarding education provided in curricula in this area of practice. as a first step towards accomplishing this goal, the objective of this study was to describe the current wheelchair service provision education offered in professional rehabilitation programmes in different resource settings across the world. methods design this project used a cross-sectional survey design, in order to acquire data regarding the current situation in wheelchair service provision education from educational programmes worldwide in a cost-effective manner (hall 2011). the data were collected as part of a larger study, which surveyed respondents from both educational and non-educational institutions worldwide. recruitment and sample a geographically diverse convenience sample of respondents was recruited through the iswp listserv (e.g. individual university contacts and world confederation for physical therapy’s network for physical therapy educators) and snowball sampling. the invitation to participate and the survey link were sent via email with recruitment beginning on 05 august 2015 and remaining open until 02 september 2015. respondents were not reimbursed for their time. measurement the iswp developed the survey content based on committee members’ knowledge of the wheelchair service provision process. it was formatted using survey monkey (www.surveymonkey.com). the final version was based on iterative feedback from committee members and pilot testing of the online version by two committee members. to ensure that responses were based on shared definitions, the survey defined ‘basic’ wheelchair content as including core knowledge and the who eight-step model and the ‘intermediate’ level of education was defined as including information beyond the basic level, such as information regarding postural support for wheelchair users and supplementary-advanced wheelchair provision for children (world health organization 2012, 2013). the final survey included 27 questions in total. respondents were first asked a series of demographic questions (n = 9) followed by a question about current wheelchair service provision education (n = 1). depending on the response to this question, each respondent was led to one of three possible sets of questions pertaining to: (1) original wheelchair material (n = 5) for those developing and teaching their own content, (2) use of who wstp (n = 7) for those using existing materials or resources and (3) interest in teaching wheelchair service provision content (n = 5) for those who have not yet integrated wheelchair content into their curriculum. each set was composed of mandatory and optional questions. thus, the number of respondents varied per question (i.e. the sum of respondents per question was not equivalent to the number of respondents directed to the set of questions). the response formats included yes or no dichotomous choices (e.g. awareness of who wstp and inclusion of wheelchair service provision content in curriculum), check boxes for lists (e.g. programmes offered in your institution and level of teaching material), typing boxes for individualised responses (e.g. name of institution and time spent teaching wheelchair service education) and large typing boxes for optional qualitative comments for elaboration (e.g. types of wheelchair service education practicum and testing). analyses raw data were downloaded from survey monkey and exported into microsoft excel 2011 (microsoft corporation, redmond, wa). quantitative responses were combined and summary statistics calculated (when appropriate) using microsoft excel 2011. frequencies were presented as percentages and fractions, such that the denominator represented only the number of respondents who answered each question. educational institutions were stratified into low income, lower middle income, upper middle income and high income according to the world bank definitions (the world bank group 2016). respondents from low income and lower middle income countries were collapsed into a ‘low-resourced’ category because of low participation rates in these two categories. qualitative comments were analysed by frequency for each topic, with the most frequent comments reported in the results as examples. the flow chart of figure 1 was created with cmaptools version 6.01.01 (florida institute for human and machine cognition, pensacola, fl). mapping of the geographic distribution of respondents as shown in figure 2 was created using amcharts.com. the following page was accessed on 09 may 2016: https://www.amcharts.com/visited_countries/. figure 1: flow chart of the survey pathway and the sample sizes. figure 2: countries of educational institutions respondents (n = 72). ethical consideration this survey was approved through the institutional review board (exempt pro15060076) at the university of pittsburgh. results demographic information a total of 72 representatives from educational institutions responded to the survey (table 1). the respondents’ progression through the survey consisted of 43, 14 and 15 respondents directed into the set of questions regarding original wheelchair material, use of who wstp and interest in teaching wheelchair service provision content, respectively (figure 1). of the respondents, 11/72 (15.3%) were from lrss, 12/72 (16.7%) from upper middle-resourced settings (umrss) and 49/72 (68.1%) from hrss (figure 2). the majority of the 72 educational institutions were a university type of institution. in addition to the professional programmes listed in table 1, other related programmes offered in lrss and umrss included rehabilitation care (n = 5) and, in hrss, occupational therapy assistants (otas) programme (n = 4). table 1: professional rehabilitation programmes offered by types of educational institutions and resourced settings. current wheelchair service provision content education provided the majority of respondents (57/72, 79.2%) reported an incorporation of wheelchair service provision content in their curricula. regardless of the type of educational institution or resource level, respondents primarily used material developed by their own institutions as part of the teaching methods (43/57, 75.4%) (table 2). of the educational institutions that teach wheelchair service provision using the who wstp content, whether they also used original material or not, 3/8 (37.5%) were from lrss, 3/10 (30%) were from umrss and 1/39 (2.56%) was from hrs. additionally, 2/39 (5.1%) from hrss indicated the use of the wheelchair skills program (kirby et al. 2016a) in the ‘others’ answer box and four other respondents also reported doing so in the typing comments boxes at the end of the survey. table 2: frequency of wheelchair service content taught by resource settings. original wheelchair service provision content of the 43 respondents who reported development of original wheelchair service provision content, 6/8 (75%) were from lrss, 6/10 (60%) from umrss and 31/39 (79.5%) from hrss. of the 42/43 (97.7%) responses to the question regarding level of education, it was reported that basic (19/42, 45.2%), intermediate (7/42, 16.7%) and a combination of basic and intermediate (14/42, 33.3%) were taught. one respondent did not answer this question and two respondents provided qualitative information only. although 10 respondents did not provide a response, 33/43 (76.7%) respondents reported the number of hours spent teaching original wheelchair service provision content. the range per setting was 2–45 h for hrss (mean: 13 h, standard deviation: 10.1 h) (n = 25), 6–32 h for umrss (n = 4) and 3–35 h for lrss (n = 4). at 27/33 (81.8%) educational institutions, wheelchair service provision content was taught for 20 h or less. of 42 responses to the question on pedagogical methods, 28 (66.7%) reported the inclusion of practical sessions. for 3/5 (60%) educational institutions from lrss and 2/4 (50%) educational institutions from umrss, practical involved wheelchair provision to actual wheelchair users, as per qualitative comments. of the 19 educational institutions from hrss that responded, wheelchair service provision simulations (6/19, 31.6%), ‘a day in a wheelchair’ (3/19, 15.8%) and wheelchair service provision at a seating clinic (2/19, 10.5%), including an outreach clinic on a mission trip to haiti, were examples of practical experiences provided via qualitative comments. thirty-seven of these 42 respondents (88.1%) also reported that their curricula included student evaluations on wheelchair content. for those respondents who elaborated on their testing processes via qualitative comments, it was reported that written (n = 17) and practical exams (n = 25) were used. world health organization wheelchair service training packages of the 72 survey respondents, 33 (45.8%) were aware of the who wstp, including 9/11 (81.8%) from lrss, 11/12 (91.7%) from umrss and 13/49 (26.5%) from hrss (figure 3). seven of these respondents reported using the who wstp (lrss: n = 3; umrss: n = 3; hrs: n = 1). while 2/7 (28.6%) did not respond, 5/7 (71.4%) provided insight regarding which who wstp packages were used: 4/5 (80%) respondents reported that they used the basic package and 1/5 (20%) (from umrs) reported that they used both the basic and intermediate packages. the packages were used in their entirety by 4/5 (80%) respondents. in response to the time frame during which the who wstp was taught, 3/4 (75%) respondents taught the basic package in a continuous block, while one respondent taught the basic package throughout the programme. the who wstp was taught by either a professor in the department (2/4, 50%) or a local service provider (2/4, 50%). the who wstp was integrated towards the end of the curriculum for the three respondents who answered this question. five respondents provided additional comments regarding the universal applicability of the who wstp with the understanding that adaptations may be required to accommodate specific contexts, as recommended in the who wstp. figure 3: awareness of world health organization wheelchair service training packages in educational institutions based on level of resources. comments provided additional insights into respondents’ opinions regarding the who wstp. the respondents from educational institutions that offered an ota programme commented that many of the tasks in the who eight-step model were beyond the role of an ota. other respondents (n = 2) would like to see wheelchair service provision content integrated into programmes such as community-based rehabilitation work, medics and paramedics. two additional respondents would like to see the who eight-step model adopted as the educational standard by the national accrediting bodies (e.g. association of canadian occupational therapy university programs) and by the world federations of rehabilitation professionals (e.g. federation of occupational therapists and world confederation for physical therapy). finally, three respondents noted their hopes of seeing iswp change international policies on wheelchair service provision by establishing the who eight-step model as the educational standard. interested in teaching fifteen of 72 respondents (20.8%) reported that they did not currently teach wheelchair service provision content, most (10/15, 66.7%) from hrss. an interest in integrating wheelchair service provision content, however, was expressed by 14 of these 15 respondents (93.3%), 5 (35.7%) of whom were aware of the who wstp as an existing resource. of these 14 respondents, two participants (14.3%) did not answer the following question, but 5/12 (41.7%) reported that they had previously contacted an organisation or an individual to obtain information on the integration of wheelchair service provision content into their curriculum. nine respondents predicted that an average of 12.4 ± 12.0 h (range: 1–35 h) could be potentially reserved for wheelchair service provision education at their institutions, where 2/9 (22.2%) were from lrss, 2/9 (22.2%) from umrss and 5/9 (55.5%) from hrss. ultimately, 10/12 (83.3%) respondents expressed interest in the who wstp, with four of these respondents specifically interested in integrating who wstp material into their curriculum. discussion we achieved our goal of developing a more comprehensive understanding of the current state of wheelchair service provision education provided in academic curricula around the world. with responses from 72 educational institutions from 21 countries of all resource settings, this is one of the first studies to investigate this situation on a global scale. this survey expands on previous studies that examined only partial aspects of the wheelchair service provision education offered in professional rehabilitation programme curricula, such as wheelchair assessment and skills training (best, miller & routhier 2015; coolen et al. 2004; kirby et al. 2011; white 2003) or wheelchair prescription (silcox 1995). most educational institutions taught original wheelchair service provision education at a basic level, which includes topics from the who eight-step model, or content at an intermediate level. however, the commonly reported duration of wheelchair-related education is well under the 35–40 h recommended to teach the who eight-step model using the tool of who wstp that was developed by a team of experts around the world and represents the minimum standard from the perspective of who. from our findings, the difference in time spent teaching is perhaps an indication that not all topics from the who eight-step model were covered in original wheelchair service provision content. consequently, students receiving training through these programmes may not acquire the knowledge or skills necessary to provide basic wheelchair service. most original wheelchair service provision education included practical training and testing developed in-house. in lieu of an institution-developed written test, an alternative could be the iswp wheelchair service provision – basic test, a tool developed and validated by the iswp to measure the basic competency of wheelchair professionals worldwide (gartz et al. 2017). a small portion of education institutions, mostly from lrss and umrss, used the who wstp to teach wheelchair service provision education. one possible reason for the regional bias of who wstp use is that the initial efforts by the who targeted lrss, that is, when it first published the who eight-step model for wheelchair service provision (world health organization 2008). additionally, a previously identified barrier in the integration of new topics in rehabilitation programme curricula is the lack of faculty interest and expertise (kanny, smith & dudgeon 2005). in our study, a lack of knowledge was found, such that 36/49 (73.5%) respondents from hrss were unaware of this resource. to date, the who wstp is the only readily available training tool that focuses on the who eight-step model. building on the survey results, other possible methods to teach the who eight-step model are in development, such as the iswp hybrid course that combines online self-study and face-to-face practical training. additionally, the iswp has launched an outreach campaign to raise global awareness about quality wheelchair products and services, and the variety of available resources, including the who wstp, to improve the situation. our results suggest that a new target of these awareness campaigns should be educational institutions in hrss, while ascertaining the awareness and maintaining the interest of educational institutions from lrss and umrss. although not explicitly asked in the survey, the wheelchair skills program was identified as a wheelchair education tool in four curricula in hrss. the wheelchair skills program is another resource that concentrates on and enhances two steps of the who eight-step model: assessment and user training. the wheelchair skills program is shown to be efficient in different contexts in the world, including turkey (ozturk & ucsular 2011), india (kirby & cooper 2007), united states (kirby et al. 2016b) and canada (best et al. 2005; macphee et al. 2004). a recent systematic review of 10 randomised controlled trials has confirmed the safety and effectiveness of wheelchair skills training (tu et al. 2017). this trait of universal applicability in training tools is crucial for the global standardisation of wheelchair service provision education. respondents from educational institutions that did not currently teach wheelchair service content expressed an interest to do so. with this group of respondents, we saw the opportunity to show them the available resources, specifically the who wstp, through a series of questions. before participating in this survey study, less than half of this respondent group were aware of the who wstp, but the majority indicated an interest in integrating the who wstp into their programme curricula. this interest also aligns with students’ enthusiasm in wheelchair education as demonstrated in previous studies (giesbrecht et al. 2015; kirby et al. 2011). in these studies, students volunteered to attend wheelchair skills testing and training workshops (based on the wheelchair skills program) offered on an extracurricular basis without promise of credit (giesbrecht et al. 2015; kirby et al. 2011). this voluntary choice may reflect the importance of wheelchair service provision education as perceived by students in health professional programmes. five of the 12 (41.7%) educational institutions interested in teaching wheelchair content have already reached out to begin the development of a wheelchair service provision course. this finding suggests an opportunity for iswp to initiate partnerships for the integration of wheelchair service provision education. the inconsistency found in current wheelchair service provision education highlights an opportunity to integrate all who eight steps of wheelchair service provision. our study found that some educational institutions acknowledged this need for a universal programme with flexibility to adapt a variety of considerations. one consideration is the physical environment, for example the type of cushion material needs to be suitable for the local climate. another aspect to consider is the scope of practice of different rehabilitation professionals. for example, programmes such as ota reported offering wheelchair-related education, but highlighted that only parts of the who eight-step model applied to the scope of ota. on the other hand, in lrss where access to rehabilitation service is a challenge (world health organization 2011), any health workers trained in wheelchair provision would increase appropriate wheelchair service provision. the emergence of community-based rehabilitation training presents an opportunity to explore training non-rehabilitation professionals who can then assist in wheelchair provision (seymour 2016). limitations this study had several limitations. the volunteer sample captured using this cross-sectional research design may have consisted of individuals who prioritise and had pre-existing interest in wheelchair service provision education. thus, the results cannot be generalised to all educational institutions that may or may not include wheelchair service provision education. additionally, the sample was underrepresented in respondents from lrss. as the survey was internet-based and written in english, these factors may have limited the participation to respondents who were comfortable responding in english. finally, each respondent answered on behalf of his or her entire institution, possibly masking the differences between each professional programme offered. future studies future studies need to address the limitations by including translated, low-bandwidth and paper options to reduce bias in the recruitment. a follow-up survey will further investigate the topics in original wheelchair service provision education to see if and how they reflect the who eight-step model. additional detail on wheelchair service provision content in curricula specific to each professional programme will be collected directly from stakeholders in academia who participate in the development of curricula, such as programme directors. information on pedagogic methods (e.g. in class lectures or distance education programmes) of current and prospective wheelchair service provision content will also enlighten the situation. other initiatives include qualitative interviews and partnerships with pilot sites that will enhance the iswp’s understanding of barriers and facilitators faced by educational institutions currently integrating the who eight-step model into their curricula. despite the limitations, this study is the first to describe current wheelchair service provision education in professional rehabilitation programme curricula on a global scale. conclusion although the majority of the educational institutions reported teaching wheelchair-related content, there is great variability in what and how it is taught and evaluated. the who eight-step model and other readily available resources could serve as guides for wheelchair service provision education. the survey results inform the development of integration tools to guide educational curricula development, with the ultimate goal of improving the quality of wheelchair service provision worldwide. acknowledgements the authors are grateful to lauren flaherty (motivation australia) for her work in the development of the survey. funding was provided by grant number apc-gm-0068 provided through jsi research and training institute and the us agency for international development. competing interests the authors declare that they have no financial 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wheelchair service training package – intermediate level, world health organization, geneva, viewed 15 june 2017, from http://www.who.int/disabilities/technology/wheelchairpackage/wstpintermediate/en/ world health organization, 2015, who wheelchair service training package for managers and stakeholders, world health organization, geneva, viewed 15 june 2017, from http://www.who.int/disabilities/technology/wheelchairpackage/wstpmanagers/en/ reviewer acknowledgement open accesshttp://www.ajod.org page 1 of 1 the editorial team of the african journal of disability recognises the value and importance of the peer reviewer in the overall publication process – not only in shaping the individual manuscript, but also in shaping the credibility and reputation of our journal. we are committed to the timely publication of all original, innovative contributions submitted for publication. as such, the identification and selection of reviewers who have expertise and interest in the topics appropriate to each manuscript are essential elements in ensuring a timely, productive peer review process. we would like to take this opportunity to thank all reviewers who participated in shaping this issue of the african journal of disability: annie synnot arvin bhana brian watermeyer catherine ward diana rose graham lindegger janieke van nugteren jason r. bantjes johan malan juliet r.h. wakefield karen lazar kees van der waal lana van niekerk marguerite schneider michelle botha patrick devlieger quinette louw richard walker romy parker rose richards sandro vento seana gall sharon kleintjes simate simate siri wormnaes stine braathen surona visagie vic mckinney 117 we appreciate the time taken to perform your review successfully. in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on http://www.ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website and register as a reviewer. to access your details on the website, you will need to follow these steps: 1. log into the online journal at http://www. ajod.org 2. in your ‘user home’ [http://www.ajod.org/ index.php/ajod/user] select ‘edit my profile’ under the heading ‘my account’ and insert all relevant details, bio statement and reviewing interest. 3. it is good practice as a reviewer to update your personal details regularly to ensure contact with you throughout your professional term as reviewer to the african journal of disability. please do not hesitate to contact me if you require assistance in performing this task. rochelle flint submissions@ajod.org tel: +27 21 975 2602 fax: +27 21 975 4635 african journal of disability abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) aditya d. pratama department of physiotherapy, faculty of vocational education program, university of indonesia, depok, indonesia haunan n. izdihar department of physiotherapy, faculty of vocational education program, university of indonesia, depok, indonesia marilyn moffat department of physical therapy, graduate school of education, new york university, new york, united states department of physical therapy, institute of health professions, massachusetts general hospital, boston, united states department of health and physiology, graduate school of arts and science, new york university, new york, united states citation pratama, a.d., izdihar, h.n. & moffat, m., 2025, ‘effect of neurodevelopmental treatment on gross motor function and daily living in children with cerebral palsy’, african journal of disability 14(0), a1758. https://doi.org/10.4102/ajod.v14i0.1758 original research effect of neurodevelopmental treatment on gross motor function and daily living in children with cerebral palsy aditya d. pratama, haunan n. izdihar, marilyn moffat received: 24 may 2025; accepted: 25 aug. 2025; published: 15 oct. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: daily tasks can be challenging for young individuals with motor impairments caused by brain disorders. neurodevelopmental treatment (ndt) aims to enhance motor function by concentrating on the central nerve and neuromuscular systems. however, research on the effectiveness of ndt for children with spastic diplegia in indonesia, particularly regarding gross motor skills and daily activities, is limited. objectives: this study aimed to investigate the effects of ndt on activities of daily living (adl) and gross motor skills in children with spastic diplegia. methods: this study utilised a pre-test–post-test experimental design. twenty children diagnosed with spastic diplegia were recruited via purposive sampling from a specialised paediatric rehabilitation centre. the modified weefim was used to assess adl, and the gmfm-88 was utilised to measure gross motor abilities. the ndt intervention was administered over the course of 8 weeks, twice a week. results: activities of daily living (p < 0.001, mean improvement of 13.6) and gross motor abilities (all gmfm-88 tests, p < 0.05) showed significant improvements. a substantial favourable association (r = 0.702; p < 0.001) was observed between gmfm-88 and weefim scores, suggesting that improvements in motor skills were associated with better daily functioning. conclusion: neurodevelopmental treatment helped children with spastic diplegia with their everyday activities and motor function, supporting its role in promoting independence. contribution: this study fills a gap in research by evaluating ndt’s impact on daily activities and indonesian children with cerebral palsy and their motor function, contributing to a deeper understanding of its benefits. keywords: neurodevelopmental treatment; cerebral palsy; gross motor function; activities of daily living; spastic diplegia; rehabilitation; physiotherapy; indonesia. introduction the most frequent reason why children have long-term physical disabilities, namely cerebral palsy (cp), affects 17 million individuals globally and is present in one out of every 500 infants (khan et al. 2022). according to upadhyay et al. (2020), cp is a collection of non-progressive, irreversible problems of movement and posture development that are caused by abnormalities in the growing foetus or newborn brain. along with epilepsy and secondary musculoskeletal issues, these main motor abnormalities are frequently accompanied by related deficits in sensation, cognition, communication and behaviour (upadhyay et al. 2020). motor impairments in cp occur because of brain damage that affects the child’s coordination, balance and movement patterns (upadhyay, tiwari & ansari 2020). being born prematurely and having a low birthweight are among the primary factors that elevate a newborn’s risk of developing cp. additional variables that raise the chance of cp include multiple pregnancies, certain genetic conditions (such as specific gene mutations), maternal infections passed to the infant, lack of oxygen to the brain, perinatal stroke, neonatal seizures and severe infections like meningitis (pavone et al. 2021). the prevalence of cp shows substantial variation across different countries and regions, influenced largely by economic status. in high-income countries, approximately 1.5 to 3 out of every 1000 live births are affected by cp (patel et al. 2020; sadowska et al. 2020). in contrast, estimates in indonesia suggest that between one and five children per 1000 live births are impacted by this condition (salfi, sahorso & atika 2019; das & ganesh 2019). as of 2023, west java province reported the highest number of children with developmental delays in the country, totalling 154 476 cases. within this context, cp was reported to have a prevalence rate of 0.1%, a figure at the lower end of national estimates (bkpk 2023). spastic diplegia, a common subtype of cp, primarily affects motor control in the legs more than the arms and is often characterised by central hypotonia and related muscle weakness in the trunk (abbas et al. 2024). this lack of trunk control is a primary reason for the challenges with gross motor abilities, including movement and walking, commonly observed in these children (wang et al. 2024). these motor skill deficits have cascading consequences on a child’s daily life, which is comprehensible using the international classification of functioning, disability, and health (icf) framework (karmomyanan et al. 2023). delays in the development of gross motor skills (an impairment of body function) are closely linked to limitations in performing daily functional tasks (activity limitations) (emara 2015). ultimately, these limitations restrict a child’s involvement in social, educational and community roles, an issue defined as participation restriction (khanna et al. 2023). such severe restrictions in participation can negatively impact their health-related quality of life (lucas et al. 2016), as underlying movement impairments make it harder for them to perform everyday tasks independently (karmomyanan et al. 2023). neurodevelopmental therapy (ndt), developed by berta and karel bobath, has been a widely recognised treatment modality for children with cp since the 1940s (tekin et al. 2018). this therapeutic approach is a problem-solving strategy that targets motor and postural abnormalities resulting from lesions inside the central nervous system (primadasa & widodo 2022). the core of ndt involves direct therapeutic handling to inhibit atypical movement patterns while facilitating more typical ones. therapists use specific ‘key points of control’ on the trunk and limbs to influence muscle tone and guide the child through functional activities like sitting, reaching or transitioning between positions. targeting the neuromuscular and central neural systems, this therapy aims to maximise functional independence and improve gross motor efficiency (sah, balaji & agrahara 2018). the ultimate goal is the habituation of these new motor patterns, where the child learns to automatically incorporate them into daily routines, leading to improved overall function and participation. based on existing evidence, ndt appears to contribute to enhancing gross motor performance and everyday capabilities among paediatric patients with cp (novak et al. 2020). however, more focused research is required. to yield specific findings, this study concentrated on youngsters who suffer from spastic diplegia, a common form of cp whose characteristic impairments in trunk control and lower limb function are key targets for the ndt approach. for children with cp in indonesia, this study aims to thoroughly explore the impact of ndt on both gross motor skills and independence in daily activities (e.g. self-care, mobility). it is hypothesised that ndt has a significant, positive impact on these outcomes. furthermore, the study will assess if an association exists between gains in gross motor function and improvements in daily activity performance following the intervention. research methods and design sample size this quantitative study utilised a pre-experimental, pre-test-post-test design conducted without a control group (adiputra et al. 2021). it took place from february 2025 to march 2025 at a private, specialised paediatric rehabilitation centre located in a major urban area in indonesia. a total of 20 participants were recruited via purposive sampling based on detailed eligibility criteria. inclusion criteria for participants were as follows: (1) a spastic diplegia diagnosis verified by a paediatric neurologist at least 1 year prior to the study; (2) an age range of 5–12 years. this range was selected as children in this developmental stage are typically able to participate actively in therapy and assessments, while their motor patterns are still adaptable to intervention; and (3) children with cp who are actively undergoing therapy at ramah cerebral palsy (rcp) bogor. all participants were actively undergoing regular therapy at the centre. children were excluded if they had undergone orthopaedic surgery during the previous 12 months or had received injections of botulinum toxin, which could confound the results. prior to participation, the parents or legal guardians of every child provided written, informed consent. outcome measures two standardised instruments were employed to evaluate therapy outcomes: ‘gmfm-88’ and ‘weefim’. the gmfm-88 is a criterion-referenced test designed to measure motor function in children with cp. walking, sprinting, leaping, crawling, kneeling, sitting, rolling over and standing are the five domains into which its 88 tasks are divided. the gmfm-88 is acknowledged for its good construct validity for this demographic and its strong test-retest and inter-rater reliability (intra-class correlation coefficient [icc] > 0.98), providing statistical justification for its use (alotaibi et al. 2013; anggoro et al. 2012). to evaluate functional independence in daily activities, this study utilised a 25-item modified weefim. this specific version was previously adapted and validated for use in children with developmental disorders in indonesia (kim et al. 2022). the instrument assesses two domains: self-care and mobility, with item scores ranging from 1 (completely dependent) to 5 (fully independent). in its validation study, this modified instrument demonstrated high test-retest reliability (icc = 0.89), as well as internal consistency (cronbach’s alpha = 0.92) (kim et al. 2022). this established psychometric evidence ensures its appropriateness and justifies its application in this study. intervention the intervention was delivered by two certified neurodevelopmental treatment (ndt) physiotherapists, each possessing more than 5 years of clinical experience in paediatric rehabilitation. all participants attended 60-min individual therapy sessions twice weekly over an 8-week period, for a total of 16 sessions. the physiotherapy programme was based on ndt principles and individually designed to meet the unique requirements of children suffering from spastic diplegia, focusing on improving trunk control, modulating muscle tone and facilitating more typical movement patterns. key treatment strategies involved the facilitation of postural control by utilising therapeutic balls and bolsters to activate core musculature; the inhibition of atypical tone through specific handling techniques like slow, rhythmic rotation of the trunk over the pelvis; and the guidance of functional movements such as sit-to-stand using key points of control to ensure proper alignment and weight-bearing. these techniques were integrated into task-oriented practice, such as reaching for objects or practising stepping patterns, to enhance motor learning and functional carryover into daily life. research procedure at the start of the study, parents or guardians provided written consent and participated in interviews to gather basic demographic information, including the child’s identity, age range and sex classification. during the week prior to the intervention, pre-assessments were conducted by the two certified ndt physiotherapists involved in the study. the modified weefim was administered via structured interviews with parents or guardians, and the gmfm-88 was assessed by seeing the child’s performance up close. after the 8-week intervention, post-intervention assessments using the same instruments and procedures were administered to evaluate changes in motor and functional performance. statistical analysis spss (version 26.0) software was used for statistical analysis. to ascertain if the data distribution was normal, the shapiro-wilk test was employed. respondent characteristics were described using descriptive statistics; measures of central tendency were presented as the median for data that are not normally distributed and the mean and standard deviation for data that are normally distributed. the selection of inferential statistical tests was based on the outcome of the normality test. the data for the modified weefim scores were found to be normally distributed; therefore, the preand post-intervention scores were suitably compared using the paired t-test. conversely, the gmfm-88 scores were not normally distributed, which necessitated using the wilcoxon signed-rank test, which is non-parametric. to look at the relationship between gross motor skills (gmfm-88 scores) and daily activities (modified weefim scores), the correlation between spearman’s rank and order was employed. this test is non-parametric and was chosen because the gmfm-88 data did not meet the assumption of normality required for a pearson correlation test. ethical considerations this study involving human subjects was carried out in compliance with national regulations and institutional policies, following the declaration of helsinki’s ethical guidelines (world medical association 2013). this study was approved ethically by the ethics committee of the vocational education programme, universitas indonesia, on 14 february 2025 (approval no.: kes-53/01/2025). results participant characteristics table 1 presents a summary of participants’ characteristics, including age, sex and their scores on the gmfm-88 and modified weefim assessments, both before and after the intervention. table 1: demographic and baseline characteristics of participants. the age distribution revealed that most participants (40%) were 5 years old. other age groups, such as 6 years, 7 years and 12 years old, represented between 10% and 20% of the total sample. although the age range varied, children aged 5 made up the largest group. the composition of participants showed a difference in the proportion of responders who were male and female. among the 20 participants, 11 were male (55%) and 9 were female (45%). the results of the pre-test and post-test for (gmfm-88) and (modified weefim) showed an increase across all dimensions, demonstrating an overall improvement. in gmfm-88, the average scores across all dimensions increased from pre-test to post-test. similarly, the average modified weefim score rose from 67.1 during the pre-test to 80.7 in the post-test. tables 2 and 3 summarise the preand post-intervention scores for gmfm-88 and weefim. table 2: pre-test and post-test distribution of gmfm-88. table 3: pre-test and post-test distribution of modified weefim scores. normality test in order to determine how the independent variable affects the dependent one, the shapiro–wilk test was utilised to first ascertain if the data distribution was normal. in light of the test’s outcome, the authors employed the wilcoxon signed-rank test for data that were not normally distributed and the paired samples t-test for data that were normally distributed. the relationships between the variables were also investigated using the pearson correlation test. for all inferential tests, the threshold for statistical significance was set at p < 0.05. the wilcoxon signed-rank test, which was used to evaluate the gmfm-88 scores, revealed an increase in scores following the intervention, and are summarised in table 4. results demonstrated an increase in the mean scores across all five dimensions (a–e) following the intervention, suggesting improvement. table 4: wilcoxon signed-rank test for gmfm-88 scores. additionally, a paired t-test was performed to compare the modified weefim scores both before and following the intervention. table 5 displays the paired t-test outcomes for the modified weefim. table 5: paired t-test for modified weefim scores. the analysis of the modified weefim scores revealed a significant improvement in the participants’ daily living abilities following the intervention (p < 0.001). the mean increase of 13.600 points indicates a substantial and clinically meaningful gain in functional independence. these findings strongly suggest that the ndt protocol was effective in enhancing the participants’ ability to carry out daily activities. the relationship between neurodevelopmental therapy administration and gross motor skills and activities of daily living to assess the connection between ndt intervention and progress in motor abilities and daily functioning, a pearson correlation analysis was conducted between total gmfm-88 and modified weefim scores. these findings are summarised in table 6, which presents the detailed results of the pearson correlation analysis. table 6: correlation between gmfm-88 and modified weefim post-intervention scores. table 6 presents the results of paired t-tests comparing preand post-intervention scores. significant improvements were observed in gmfm-88 and weefim scores (p < 0.05), indicating that ndt positively impacted both gross motor function and daily living activities. the analysis showed a noteworthy positive correlation (p < 0.001, r = 0.702), suggesting that improvements in motor function are closely associated with increased independence in daily tasks. discussion this study demonstrated that an 8-week ndt intervention yielded statistically notable gains in children with spastic diplegia in terms of their independence in everyday activities and gross motor skills. the findings suggest that a structured ndt programme can be an effective modality for this specific population (ahmed et al. 2025; khanna et al. 2023). the gmfm-88’s measurement of gross motor function improvement aligns with existing evidence. the results of this investigation are similar to the findings of iftikhar et al.’s study 2024, which reported significant gmfm-88 improvements in children with spastic diplegia in pakistan after an 8-week ndt intervention. other studies, such as labaf et al. (2015) and tsorlakis et al. (2004), also demonstrated that ndt could significantly improve gross motor outcomes in children with cp, strengthening the consistency of our findings. the positive outcome in this study can likely be attributed to ndt’s emphasis on inhibiting atypical tone and facilitating postural control, which directly addresses the core motor impairments of spastic diplegia, particularly trunk weakness and challenges in motor planning (macwilliams et al. 2022; zahra et al. 2024). similarly, the enhanced independence in daily activities, reflected by a mean increase of 13.6 points on the modified weefim, highlights the functional impact of the therapy. this result reinforces tekin et al.’s (2018) findings, which showed comparable gains in weefim scores among children with spastic diplegia and hemiplegia in turkey, using a similar intervention frequency. given that the upper limb function of children with spastic diplegia is often less affected, the improvements in activities of daily living (adl) may stem primarily from enhanced postural stability and mobility, allowing for greater independence in tasks such as dressing and transferring. similarly, park and kim (2018) and chokshi et al. (2021) also reported that higher therapy frequency and improved postural control were positively correlated with better adl performance, supporting our finding (kim et al. 2022). furthermore, this study found a strong, favourable relationship between enhancements in freedom in daily tasks and gross motor function (r = 0.702, p < 0.001). this finding empirically supports the icf that posits that improvements in body function (e.g. motor skills) can lead to increased activity and participation in daily life (emara 2015). despite the positive findings of this study, it is crucial to acknowledge the ongoing scientific debate surrounding ndt’s efficacy. a meta-analysis by te velde et al. (2022) concluded that ndt may have limited superiority over other task-specific interventions. similarly, novak and damiano (2024) argue that although ndt remains widely used, stronger empirical validation is needed compared with more evidence-based, activity-focused approaches. zanon (2018), in a cochrane review, also emphasised the need for higher-quality trials to establish ndt’s clinical effectiveness. therefore, while this study supports the use of ndt for specific goals in a targeted population, clinicians should consider integrating its principles with other evidence-based approaches to optimise outcomes for children who have cp. in conclusion, the findings suggest that ndt is a valuable intervention for enhancing motor skills and functional autonomy in everyday tasks for children with spastic diplegia. limitations it is crucial to consider this study’s several limitations. firstly, the pre-post experimental design lacked a control group, making it difficult to attribute the observed improvements solely to the ndt intervention. secondly, generalisability is constrained by the tiny sample size as well as the fact that it was drawn from one private paediatric rehabilitation centre in an urban context in indonesia; these results may not be applicable to children in public or rural healthcare settings. thirdly, the study focused exclusively on children with spastic diplegia, which restricts the applicability of the findings to other forms of cp. the brief 8-week duration of the intervention made it difficult to observe any long-term clinical changes. the preand post-intervention tests were not done by independent researchers but by the same therapists who undertook the intervention. conclusion the findings from this small-sample study suggest that an 8-week ndt intervention was associated with improved gross motor abilities and daily task independence in children with spastic diplegia. within this specific context, significant progress was observed in gmfm-88 and modified weefim scores. while these findings are positive, the study’s shortcomings, such as the lack of a reference group, the limited sample size and the lack of independent measurements, mean that any possible advantages of ndt in improving motor development and everyday functioning must be viewed cautiously. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.d.p., h.n.i. and m.m. were responsible for data collection and analysis, as well as for drafting the manuscript. additionally, a.d.p. and m.m. conducted the critical revision of the manuscript and provided overall supervision. all authors, a.d.p., h.n.i. and m.m., actively participated in discussions of the research findings and contributed throughout the entire writing process. funding information this research received no specific grant from any funding agency in the public, commercial or not for profit sectors. data availability the supporting data for the results of this research are available from the corresponding author, a.d.p., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s findings and content. references abbas, z.u., ahmed, u., sharif, f., siddique, k., fatima, s.s. & ajmal, m., 2024, ‘effects of routine physical therapy with and without kinesio taping in improving gross motor function in sitting and standing in spastic diplegic cerebral palsy children’, journal of bodywork and movement therapies 39, 666–672. https://doi.org/10.1016/j.jbmt.2023.11.049 adiputra, i.m.s., wibawa, i.n., sudarma, k., putra, a.w., dewi, n.l. & mahendra, i.g., et al., 2021, 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88–96. https://doi.org/10.35451/jkf.v7i1.2263 zanon, m., 2018, ‘neurodevelopmental treatment approaches for children with cerebral palsy’, cochrane database of systematic reviews 2018(8), cd011937. https://doi.org/10.1002/14651858.cd011937.pub2 abstract introduction methods results discussion conclusion acknowledgements references about the author(s) tasneem hartley division of physiotherapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa marlette burger division of physiotherapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa tonya m. esterhuizen division of epidemiology and biostatistics, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa gakeemah inglis-jassiem division of physiotherapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation hartley, t., burger, m., esterhuizen, t.m. & inglis-jassiem, g., 2020, ‘functional outcome of stroke inpatients according to human immunodeficiency virus status: a feasibility study’, african journal of disability 9(0), a618. https://doi.org/10.4102/ajod.v9i0.618 original research functional outcome of stroke inpatients according to human immunodeficiency virus status: a feasibility study tasneem hartley, marlette burger, tonya m. esterhuizen, gakeemah inglis-jassiem received: 01 feb. 2019; accepted: 27 jan. 2020; published: 30 mar. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: stroke in human immunodeficiency virus positive (hiv+) individuals is becoming an increasing concern. being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent. objectives: this feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying hiv status. method: all stroke patients meeting the inclusion criteria were recruited over a 6-month period at a south african inpatient rehabilitation centre. data were collected on admission and discharge using outcome measures including the barthel index (bi), berg balance scale (bbs) and the use of assistive devices used to describe independence with activities of daily living (adl), mobility and safety post-stroke. statistical analysis was performed using stata version 14.2. results: the feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant hiv status. an appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding. conclusion: to increase generalisability and the understanding of the unique hiv+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with hiv status confirmation are recommended. keywords: stroke; hiv; function; activities of daily living; mobility. introduction functional outcomes may differ between stroke patients who are human immunodeficiency virus-negative (hiv−) and those who are hiv-positive (hiv+) because of differences in demographic characteristics, risk factors and disease manifestations (heikinheimo et al. 2012; tipping et al. 2007; verma et al. 2012). lowto middle-income countries, particularly in sub-saharan africa, have seen a rise in stroke prevalence (benjamin et al. 2012; zimba et al. 2017). other than the rise in non-communicable diseases, such as hypertension and diabetes, which have been linked to an increased risk of stroke, hiv-related stroke in this region is becoming a concern (chin 2012; modi, modi & mochan 2008). sub-saharan africa is said to have 52% of the global hiv+ population (unaids 2016). this disproportionate amount weighs heavily on its healthcare system (mochan, modi & modi 2003; zimba et al. 2017). furthermore, it is concerning that those with hiv-related strokes are found to be significantly younger than the typical stroke population (heikinheimo et al. 2012; mlay & bakari 2012). this may pose a greater burden in sub-saharan africa as 34% of hiv+ people are aged between 15 and 24 years, whereas globally only 22% of the hiv population are in this age range (unaids 2016). a previous study predicted that cardiovascular diseases, including stroke, are set to surpass infectious diseases as the major cause of morbidity and mortality in sub-saharan africa by the year 2020 (yusuf et al. 2004). however, little is known about the mortality and, more specifically, the morbidity of hiv+ stroke patients in this region. in addition, information on the functional outcomes of hiv+ people with stroke who reside in sub-saharan africa and how much they differ from their typical stroke counterparts is still sparse. studies show that 40% – 66% of people with stroke still require assistance with activities of daily living (adl) and mobility (connor et al. 2004; verma et al. 2012). people with stroke may have varying degrees of severity and symptoms of stroke, depending on the area of the brain affected. some of the common symptoms include hemiparesis, hemisensory loss, hemineglect, dysphasia, dysarthria, ataxia, visual impairments, hearing impairments and vertigo (markus 2012). these impairments affect function, adl and ultimately the quality of life (markus 2012). the inability to perform adl impairs work ability, including the ability to remain a functional member of society, placing further strain on the sub-saharan economy (mochan et al. 2003). human immunodeficiency virus itself can negatively affect a person’s physical and cognitive well-being (dudgeon et al. 2006; moore et al. 2011; woods et al. 2009). the added neurological impairments caused by conditions such as stroke may make the afflicted more dependent and thereby less productive members of society (mochan et al. 2003). more importantly, stroke or neurological conditions, in addition to the consequences of hiv, can further be detrimental to the quality of life of the affected individuals (hughes et al. 2004; rouillard et al. 2012). it is therefore postulated that hiv+ stroke patients may differ from typical stroke patients. rehabilitation post-stroke is aimed at improving the quality of life of those affected by enhancing their physical and cognitive well-being (kitzman et al. 2017; langhorne, bernhardt & kwakkel 2011). it is aimed at attaining the highest possible level of functional independence, so that patients may be reintegrated into their communities (kitzman et al. 2017; langhorne et al. 2011). previous studies reporting on the function of hiv+ patients post-stroke focussed on mortality rather than their morbidity (heikinheimo et al. 2012; hoffmann et al. 2000; tipping et al. 2007). furthermore, the outcome measures used to assess function were often global in nature and lacked specificity and sensitivity to describe all aspects of function adequately (schepers et al. 2007). previous african studies in malawi (heikinheimo et al. 2012) and cameroon (mapoure et al. 2019) compared the functional outcome of hiv+ and hiv− stroke inpatients. these studies, as other international studies, used the modified rankin scale and reported no significant difference in function between the groups. the modified rankin scale may, however, not be sensitive enough to detect a clinically important change in functional outcomes or reflect the complexities of daily activities as outlined in the world health organization’s (who) international classification of health and functioning (banks & marotta 2007; who 2001). a more recent study by janse van rensberg, mduzi and ntsisea (2018), conducted in a rehabilitation centre in south africa, compared the functional outcome of hiv+ and hiv− stroke patients admitted for inpatient rehabilitation. the researchers used the locally developed beta assessment tool, which is based on the american version of the functional independence measure. the beta assessment tool has not yet been validated in a south african stroke cohort, and this study also found no significant difference between hiv+ and hiv− stroke patients. hence, the aim of this feasibility study was to describe the appropriate methodology for assessing functional outcomes between people with stroke, presenting with varied hiv status in the western cape of south africa. the objectives of this feasibility study, therefore, were to determine appropriate procedures and potential barriers to participant recruitment, study logistics, data collection and testing procedures, as well as generating preliminary comparative findings in a south african rehabilitation context: recruitment: the willingness of clinicians to recruit participants, number of eligible patients, follow-up and drop-out rates, and recommendations for additional strategies. logistics: communication with recruitment assistants and clinicians, scheduling testing dates and times, as well as how to decrease the impact of data collection on each participant’s rehabilitation programme and functioning of the rehabilitation centre. data collection and testing procedures: requirements in terms of space to conduct tests, equipment required for testing, outcome measure utility and documentation. generate preliminary findings on comparisons between the functional challenges of stroke patients with different hiv status. methods setting the western cape rehabilitation centre (wcrc) is a specialised rehabilitation centre for persons with physical disabilities. the wcrc is located in cape town, and its catchment area comprises the western cape and surrounding provinces, including the northern and eastern provinces of south africa. patients are also referred from surrounding countries such as lesotho, zimbabwe and namibia. the rehabilitation centre treats a range of conditions including stroke. rehabilitation services include physiotherapy, occupational therapy and speech therapy. site negotiations in the planning phase, meetings were scheduled with the wcrc management and clinicians. the main outcomes of these meetings were to identify their interest and willingness to participate in the envisaged study and to gain an understanding of the wcrc patient profile, the potential number of stroke patient admissions based on the previous 6 months, as well as the logistics and internal processes needed to successfully recruit and test participants over the study period. in addition, negotiations were made with regard to recruitment and data collection procedures to minimise the impact on clinician administrative tasks. recruitment recruitment took place at the wcrc over a 6-month period in 2016. inclusion criteria were patients aged 18 years and older; who had experienced their first ever stroke; and who were able to respond to verbal cues or commands in english, afrikaans or isixhosa. exclusion criteria were cardiac, renal or liver problems; systemic infection; psychiatric disorders; and previous stroke. an employee at wcrc was identified as a recruitment assistant and acted as a liaison between the clinicians and the primary investigator (pi). clinicians would identify potential participants and inform the recruitment assistant. the recruitment assistant would then relay this information to the pi. data collection data collection occurred twice a week. the pi would screen patient folders; if all criteria were met, written informed consent was obtained. a data collection sheet was designed and used to retrieve the relevant demographic information and medical history, and a customised scoring sheet was used to collect information for all the functional outcome measures used. outcome measures included the barthel index (bi) along with the use of assistive devices to assess independence in adl and mobility. the berg balance scale (bbs) was used to assess balance and to determine safety with mobilisation. the bi is considered the gold standard in measuring functional disability in stroke patients and has excellent validity and reliability (collin et al. 1988; hsueh et al. 2002; salter et al. 2013; wolfe et al. 1991). the 10-item bi was utilised as a self-report measure in this study, with a maximum score of 100 indicating a higher degree of independence in adl (salter et al. 2013). assistive devices issued were also considered a good indicator of function as they provided information on how dependent participants were in terms of mobility. berg balance scale is considered a strong indicator of independence in adl (braun et al. 2016). the bbs was originally designed to measure balance in the elderly but also has good validity and reliability in the stroke population (berg, wood-dauphinee & williams 1995; salter et al. 2013). it provides a quantitative assessment of balance and risk of falling with a maximum ideal score of 56, indicating a low risk of falling (berg et al. 1992). sample size as this was a feasibility study, a target sample was not an objective. however, for the main study, the sample size was calculated by comparing the distributions of the total score for the bi between the three groups (using wilcoxon rank-sum test). assuming a medium effect size of 0.5, power of 80% and a level of significance of 5%, we would need 222 sample participants (74 per group) (cohen 1969). testing procedures a separate testing area was made available by the rehabilitation centre. other than the space and examination table required for testing, the bbs required basic everyday items such as a small step and a ruler. the bi was used as a self-reported measure, and hence, these outcome measures could be considered suitable measures for a low-resource setting. this feasibility study had a preand post-design where participants were assessed on admission and reassessed on discharge. to ensure testing did not cause any inconvenience to participants’ rehabilitation schedule, testing times were scheduled once clinicians had set up their daily treatment sessions for all participants. this required the pi to accommodate potential waiting periods between participants’ treatment sessions. planned analysis and evaluation recruitment and retention of participants were analysed using methods described by walters et al. (2017), which determined recruitment rate by dividing the total sample size by months in the recruitment period. once all data were coded and captured in ms excel, statistical analysis was conducted. descriptive statistics were done on demographics and medical history. continuous data, including bi and bbs, were summarised using median, range and empirical 95% confidence intervals. statistical analysis was performed using stata version 14.2 (statacorp, 2015). association between categorical variables was assessed using the chi-squared or fisher’s exact test. differences in the distribution of continuous variables over different levels of a categorical variable were evaluated using the kruskal–wallis (k-w) test, and where differences were detected, the dunn’s test was used for pairwise comparisons. statistical significance was assessed at the 5% level. ethical considerations approval for the study was obtained from the health research ethics committee (hrec) at stellenbosch university (s15/10/232), and permission was also granted by the western cape department of health. the process of negotiating with the respective site and approval for the study took approximately 10 months prior to the commencement of data collection. to maintain the confidentiality of the hiv status of participants, all stroke patients meeting the inclusion criteria admitted during the data collection period were included in the study. hence, participants were separated into three subgroups post hoc for analysis: (1) hiv+, (2) hiv− and (3) hiv status unknown. results evaluating feasibility: recruitment and data collection after 6 months of data collection, 54 potential participants were identified. figure 1 depicts the flow chart of participation. a total of 49 participants were recruited based on inclusion and exclusion criteria. the recruitment rate was eight participants per month, which was lower than expected, particularly for the hiv+ subgroup, in relation to preceding months’ admission statistics and communication with therapists and management of the wcrc. participants were then separated into their respective subgroups. table 1 describes participant characteristics in each subgroup to enable further analysis on functional differences. figure 1: preliminary findings. table 1: demographic and stroke-related characteristics. demographics and medical history the only notable demographic difference between groups was age (p = 0.0046), with the median in the hiv+ group at 30 years, in contrast to 50 and 51 years for the hiv− and hiv status unknown groups, respectively (table 1). with regard to clinical presentation, all those in the hiv+ group sustained an infarction stroke, whereas some incidence of haemorrhagic strokes was noted in other groups (hiv−: n = 3 [17.65%] and hiv status unknown: n = 2 [8.7%]). typical risk factors for stroke such as hypertension (p < 0.001) and diabetes (p = 0.042) were most prevalent in the hiv− and hiv status unknown groups. the hiv+ group, however, had substance abuse (p = 0.038) and opportunistic infections (p = 0.005) as their more common risk factors (see table 1). as documented in table 1, the subgroups were similar with regard to all other characteristics. functional ability and safety the functional outcome measures utilised have been closely linked to the international classification of functioning (icf) (stucki, ewert & cieza 2003). the icf is a classification system, which has multiple uses in various sectors and disciplines (who 2001). in addition, it describes function at various levels, including activity. the combination of outcome measures utilised in this study gave an adequate description of function with regard to the safety and independence in performing adl including mobility. even though there were no significant functional differences between groups on admission or discharge for any of the functional outcomes (adl, independence and mobility, with p = 0.886 [k-w = 0.243]; use of assistive devices, with p = 0.300 [k-w = 2.885]; and balance with risk of falling, with p = 0.417 [k-w = 1.75]), all groups showed significant improvements. participants who were hiv+, however, tended to score in the higher percentiles for each functional outcome measure on discharge. the median bi scores at admission and discharge were similar for all groups (table 2), but it was smaller for the hiv+ group. on discharge, 17.07% (n = 7) of the sample participants were categorised as severely dependent (a score of 21–60), indicative of requiring maximal assistance with self-care and mobility. these participants tended to be older and presented with multiple risk factors. the minimal detectable change (mdc) for the bi is an increase or decrease of 4.02 points (hsieh et al. 2007). all three groups demonstrated improvement in independence in function after rehabilitation, although the hiv+ group showed less of a median change (table 2). in contrast, the median difference scores for the hiv− and hiv status unknown groups were more than double the hiv+ group (table 2). table 2: independence in activities of daily living, mobility and balance. on admission, the median score for assistive devices issued (median: 5wheelchair) indicated that majority of participants required wheelchairs as it was not safe for them to mobilise independently; however, no statistical significant difference was found among the groups (p = 0.236). on discharge, more than half of the hiv+ group did not require assistive devices as seen in the median discharge score (median: 1 – no aid required) and were able to mobilise unaided, whereas in the hiv− group, 41.67% required a walking stick (median: 2 – walking stick) and 33.33% required a wheelchair. even though the hiv+ group included participants mostly able to mobilise unaided on discharge (85.71%; n = 6), no statistical significant difference was found among the groups with regard to mobility assistive devices at the end of rehabilitation (p = 0.300). overall, the bbs scores on admission indicated a medium risk of falling (21–40) for the total sample and individual groups alike (table 2). on discharge, the median bbs score improved with rehabilitation and moved participants into the low risk of falling category (41–56) for both the total sample and the individual groups. the mdc for the bbs is 6.9 points and was surpassed by all groups (hiengkaew, jitaree & chaiyawat 2012). no minimal clinically important difference has been established in the literature as yet (hiengkaew et al. 2012). even though the median difference for the hiv− and hiv status unknown groups were double the median difference score of the hiv+ group, no difference was found among groups (p = 0.417). previous studies have developed bbs cut-off scores associated with independence in various adl (fujita et al. 2016, 2017). these studies suggest that a bbs score of 40 indicates independence in functional walking ability in strokes; 41 indicates independent transfers; 42 indicates independent toileting; 44 indicates independent dressing; and 54 indicates independence in stair climbing (fujita et al. 2016, 2017). on admission, median scores suggest that few participants in each group were independent in these adl (table 2). on discharge, all groups improved significantly, as indicated in their median change in score. the hiv+ and hiv− groups had a median score of 54, indicating independence in stair climbing. however, the hiv status unknown group had a median score of 45, indicating independence in dressing, but this may indicate that majority of these participants may not have been independent in stair climbing. nonetheless, this was not significant (p = 0.417). discussion barriers to successful study completion the challenge with ethical approval was ensuring that participant’s hiv status remained unknown to other participants. in addition, if hiv status was at the forefront of the study, potential participants would be reluctant to participate because of the stigma associated with the disease. hence, all potential participants were included regardless of their hiv status being unknown. the research team was required to budget for travel costs, printing of consent and data collection forms, use of an isi-xhosa translator when needed and employment of a research assistant. however, to achieve the required number of participants for generalisable results, longer data collection periods and multiple sites would be required. hence, future researchers should factor in the costing of additional research assistants. consideration would therefore be needed for the addition of multiple recruitment officers, research assistants and translators at all sites, which would increase the cost involved. in addition, the pi who conducted the testing was not blinded to hiv status, and thus, potential bias was introduced. there was a disproportionate amount of participants in each subgroup. the drop-out rate was mainly affected by participants being discharged earlier than expected. the pi viewed discharge plans as documented in weekly planning by clinicians; these often changed, and the documented plans were sometimes not updated. because of the dynamic nature of clinical practice and discharge planning, it is recommended that the recruitment assistant be informed of participant discharge planning, or new information should be entered digitally, so that any change in discharge dates are sent via alerts to the research team. potential barriers and preliminary comparative findings this feasibility study demonstrated objective-function-related description for the larger prospective longitudinal study and also identified challenges future studies would need to accommodate. with regard to recruitment, multiple sites and longer data collection periods are advised to ensure that a suitable sample size is reached. with a recruitment rate of eight participants per month, future studies should prepare for a data collection period of approximately 2 years to achieve an adequate sample size. the selected recruitment sites should be similar in nature. in an inpatient rehabilitation centre, majority of patients were eager to participate as their day-to-day activities consisted of rehabilitation, which is outcome based, making the setting more conducive for this type of research. future studies should accommodate expected disproportionate amount of hiv+ participants. the hiv+ group was significantly younger and presented with lower rates of typical risk factors such as diabetes and hypertension associated with ageing, which has been a common trend throughout stroke literature (heikinheimo et al. 2012; hu et al. 2005; jowi, mativo & musoke 2007; mlay & bakari 2012). functional recovery time after a neurological injury such as stroke is dependent on neural plasticity, which decreases with age. this is the ability of the brain to learn and relearn function by the adaption of neurons and development of new neural synapses. this in turn expands the amount of motor cortex involved in movement and function (kleim 2011). as in janse van rensburg et al. (2018), the hiv+ group in this study achieved similar outcomes in a shorter amount of time, with a median length of stay of 45 days, compared to 55 and 53 days in the hiv− and hiv status unknown groups, respectively (p = 0.0671). thus, future studies should look at age-matched subgroups to reduce the heterogeneity between subgroups. once the hiv+ participants were medically stable, they made good recovery and scored in the higher percentiles, compared to other groups (see table 2). however, as in previous studies, this study showed no significant functional differences between groups on admission, or on discharge, for any of the functional outcome measures (see table 2) (heikinheimo et al. 2012; kumwenda et al. 2005; mapoure et al. 2019; mlay & bakari 2012). with previous studies based at acute care facilities and researchers utilising global outcome measures, an appropriate comparison could not be made. the combination of outcome measures used in this study described functional mobility and identified participants’ independence, or assistance required, in performing adl (salter et al. 2013). thus, an adequate description of function with regard to instrumented activities could be produced with these outcome measures. the data collection procedure and combination of measures reported here could easily be utilised in diverse contexts and low-resource settings. conclusion the combination of outcome measures used in this study provided a good indication of function in terms of adl, safety and indoor mobility for people with stroke and varying hiv status. these outcome measures provided a good insight into their functional needs and abilities. future studies should include measures for community re-integration and productive activity to describe the long-term functional outcome of the younger hiv+ stroke population. even though hiv status seemed not to negatively affect the functional outcome of some stroke patients, results were not generalisable. keeping in mind the budget and resource implications, future studies should look at larger cohorts with age-matched groups, multiple recruitment sites and longer data collection periods that are required for more generalisable results and to provide a better understanding of the unique functional needs and outcomes of hiv+ stroke patients. acknowledgements the authors thank dr maxwell chirehwa, a biostatistics consultant within the division of epidemiology and biostatistics, department of global health, stellenbosch university, for assisting with the design and analysis of this study through support from the faculty of medicine and health science’s dean’s fund. competing interests the authors have no competing interests that would interfere with the publication of the manuscript. authors’ contributions t.h. was the main author and was responsible for data collection. t.h., g.i.-j. and m.b. were responsible for the conceptualisation of the study design as well as for writing and editing of the manuscript. t.h. and t.m.e. were responsible for data analysis and interpretation. funding information this study was funded by harry crossley foundation, professor quinette a. louw and ms. gakeemah inglisjassiem. during the completion of this manuscript, ms. marlette burger was funded by the south african medical research council through its division of research capacity development under the national health scholarship programme from funding received from the public health enhancement fund/south african national department of health. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer this manuscript describes original work and is not under consideration by any other journal. all authors approved the manuscript and this submission. the content hereof is the sole responsibility of the authors and does not necessarily represent the official views of the samrc. references banks, j.l. & marotta, 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and retention of participants in randomised controlled trials: a review of trials funded and published by the united kingdom health technology assessment programme’, bmj open 7(3), 1–10. https://doi.org/10.1136/bmjopen-2016-015276 wolfe, c.d.a., taub, n.a., woodrow, e.j. & burney, p.g.j., 1991, ‘assessment of scales of disability and handicap for stroke patients’, stroke 22(10), 1242–1244. https://doi.org/10.1161/01.str.22.10.1242 woods, s.p., moore, d.j., weber, e. & grant, i., 2009, ‘cognitive neuropsychology of hiv-associated neurocognitive disorders’, neuropsychology review 19(2), 152–168. https://doi.org/10.1007/s11065-009-9102-5 world health organization, 2001, international classification of functioning, disability and health: icf, world health organization, geneva. yusuf, s., hawken, s., ounpuu, s., dans, t., avezum, a., lanas, f. et al., 2004, ‘effect of potentially modifiable risk factors associated with myocardial infarction in 52 countries (the interheart study): case-control study’, lancet 364(9438), 937–952. https://doi.org/10.1016/s0140-6736(04)17018-9 zimba, s., ntanda, p.m., lakhi, s. & atadzhanov, m., 2017, ‘hiv infection, hypercoagulability and ischaemic stroke in adults at the university teaching hospital in zambia: a case control study’, bmc infectious diseases 17(1), 354. https://doi.org/10.1186/s12879-017-2455-0 abstract background methods ethical consideration results discussion conclusion acknowledgements references about the author(s) tonderai w. shumba discipline of public health medicine, university of kwazulu-natal, south africa indres moodley discipline of public health medicine, university of kwazulu-natal, south africa citation shumba, t.w. & moodley, i., 2018, ‘part 1: a review of using photovoice as a disability research method: implications for eliciting the experiences of persons with disabilities on the community based rehabilitation programme in namibia’, african journal of disability 7(0), a418. https://doi.org/10.4102/ajod.v7i0.418 review article part 1: a review of using photovoice as a disability research method: implications for eliciting the experiences of persons with disabilities on the community based rehabilitation programme in namibia tonderai w. shumba, indres moodley received: 07 aug. 2017; accepted: 21 june 2018; published: 01 nov. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: although the community based rehabilitation (cbr) programme in namibia was formally adopted in 1997, the effectiveness of the programme, including the experiences of persons with disabilities on the programme, has not been assessed to date. objectives: to explore the need for a qualitative evaluation tool for the cbr programme that can elicit the experiences of persons with disabilities. methods: a scoping review was conducted on the use of photovoice as a disability research method and its potential use in eliciting the experiences of persons with disabilities participating in the cbr programme. a comprehensive literature search was conducted on electronic databases as a part of the scoping review. results: twenty-one studies were selected for review. six studies followed the exact steps of the traditional photovoice process, and the remaining 15 studies modified the process. seventeen studies used photovoice as the only research method, 3 combined photovoice with a qualitative method and only one study combined photovoice with a quantitative method. seven studies had a sample size ranging from 6 to 10 participants as suggested by the traditional photovoice process. the duration of the studies ranged from 2 weeks to 2 years. thirteen studies investigated life experiences of persons with various disabilities and 17 studies suggested that the photovoice process increases empowerment. conclusion: photovoice is a versatile research method and has the potential to be utilised in effectively eliciting the experiences of persons with disabilities on the cbr programme in namibia. background community based rehabilitation (cbr) was initiated by the world health organization (who) in the early 1980s to improve service delivery for persons with disabilities through providing equal opportunities, social integration, promotion and protection of their human rights (who & world bank 2011). over the years, cbr has evolved and has been valued as a development approach (madden et al. 2015). to date, cbr has been implemented in over 90 countries globally (who & world bank 2011). community based rehabilitation is recommended as one of the best strategies for promoting access to services for persons with disabilities in developing countries (helander 2007). further, it has been adopted as a response, in both developed and developing countries, and as a strategy to make available sufficient and appropriate rehabilitation services to a greater number of persons with disabilities (m’kumbuzi & myezwa 2016). over the past three decades, cbr has been an effective way of providing care at a local level with integration into primary health care (phc) for persons with disabilities, particularly those living in remote rural areas. despite cbr being in existence for over three decades, its effectiveness from the perspective of persons with disabilities has not been widely assessed. an assessment of the implementation of disability programmes in namibia from the point of view of both implementers and recipients of services noted that the cbr programme in namibia is dominated by quantitative data including number of people with disabilities, number of assistive devices distributed, number of persons with disabilities receiving physiotherapy and occupational therapy (shumba & moodley 2017). thus, this study (shumba & moodley 2017) recommended the need for a qualitative evaluation tool for the cbr programme that can elicit the experiences of persons with disabilities. these results are consistent with the world report on disability that recommended the need for the utilisation of more qualitative methods to investigate the lived experiences of persons with disabilities (who & world bank 2011). community based rehabilitation evaluation has been conducted at three main levels including community, intermediate and national. at community level, the family plays an important role in providing support and rehabilitation to the person with disability. the intermediate level has professionals linked to government providing support, specialised interventions, training and technical supervision to the community (m’kumbuzi & myezwa 2016). the government offers the overall planning, coordination and evaluation role to cbr at the national level (helander 2007). over the years, at all the levels mentioned above, quantitative methods have allowed for breadth and generalisation of cbr effectiveness. however, quantitative methods are criticised for only providing medically oriented data such as number of persons with disabilities participating in cbr programme, disability types, and assistive devices distributed, but fail to collect data on personal experiences of persons with disabilities. further, the adoption of positivism in quantitative methods has been criticised for generating findings that are descriptive and lack in-depth analysis of issues. some researchers proposed the use of various qualitative methods to investigate the experiences of persons with disabilities including focus groups, interviews, document review, questionnaires and nominal groups (sharma 2004; who & idc 1996). however, these methods have been criticised for relying on the assumptions and judgements of the researcher, and this often results in information which may not reveal the true picture of respondents’ views (wang & pies 2004). further, these conventional methods of data collection may also have the effect of instilling a sense of inferiority and resentment in participants as they often view the researcher as the one processing their thoughts (wang 1999). it is essential to utilise a tool or process that reflects the unadulterated views and opinions of the individuals with disabilities. one of the challenges met by the current cbr evaluation frameworks is the low literacy rate amongst persons with disabilities. low literacy rates amongst persons with disabilities have been revealed in both low-income and high-income countries, with more pronounced patterns in poorer countries (who & world bank 2011). further, the world report on disability revealed that in southern african countries (malawi, namibia, zambia, zimbabwe), between 24% and 39% of children of 5 years and older with disabilities have never attended school. to this end, there is a need to explore the possibility of using other tools that are more suited to persons with low literacy levels and are participatory in nature. participation of persons with disabilities in cbr evaluations can be informative to implementers and policy-makers and can have relevant practical outcomes from the point of view of cbr users. under the aegis of article 32 of the uncrpd, persons with disabilities should be consulted in services in which they are involved (un 2006). similarly, madden et al. (2015) advocated for monitoring systems that are participatory and community owned to ensure programme quality and sustainability. cbr evaluation tools should include persons with disabilities and their community as a central part of the evaluation (boyce & ballantyne 2000; price & kuipers 2000; who & idc 1996). the researchers’ preliminary review of literature identified the photovoice method as embracing participatory principles that include persons with disabilities as the central part of the evaluation and as suited for persons with low literacy rates. in this respect, the photovoice method developed by wang and burris (1997) appears to have the potential to offer a practical qualitative evaluation tool to elicit the experiences of persons with disabilities on a cbr programme. on the premise that mixed methods allow for triangulation of data in cbr programme evaluation, photovoice can be applied as a qualitative data collection method as well as being incorporated in the monitoring and evaluation frameworks of cbr. photovoice is a participatory evaluative tool, commonly used in health research to promote personal and community change for community-based participatory research (cbpr) because of its accuracy in gathering information (graziano 2004). furthermore, photographs captured in photovoice facilitate interpretation of concerns and enable promotion of change (wang & burris 1997). however, photovoice has evolved since its initial conceptualisation as a community-based health promotion tool. photovoice is used as a qualitative research tool for many purposes, including as a participatory evaluation tool (wang & burris 1997), a retrospective evaluation method (kramer et al. 2010) and a needs assessment tool (findholt, michael & davis 2011). it is therefore important to review the use of photovoice as a disability research method and consider how it can be used for eliciting experiences of persons with disabilities and its role in evaluating the effectiveness of the current cbr programme in namibia. methods this scoping review was guided by some aspects of systematic reviews which stipulate that there should be a thorough and transparent process throughout all stages (mays, roberts & popay 2001) and adopted the framework proposed by arksey and o’malley (2005). the scoping framework has five stages: identification of the research question identification of relevant studies selecting studies charting data collating, summarising and reporting results. we used these stages to guide our scoping review, and the details of each stage are outlined below. identification of the research question to what extent can published literature provide evidence that photovoice has the potential to effectively elicit the experiences of persons with disabilities? further, what role can photovoice play in the monitoring and evaluation of a cbr programme? identification of relevant studies using the keyword ‘photovoice’ to answer the research question, a search was made in english for all peer-reviewed literature in the following electronic bibliographic databases: pubmed, ebscohost (medline, psychinfo, academic search, education source, health source), sage publication, science direct and web of science. reference lists of all included studies were checked to select studies. as some electronic databases may be incomplete, not up-to-date or because abstracting services can vary in coverage, indexing and depth of information (arksey & o’malley 2005), hand-searching was also done to identify any unpublished work in local university libraries of namibia (university of namibia, national university of science and technology, international university of management), relevant government ministries (ministry of health and social services, ministry of basic education, ministry of poverty eradication, ministry of justice, office of the vice president, office of the prime minister) and other relevant agencies (national disability council, office of the ombudsman). selection of studies initially, the key search word was limited to ‘photovoice’ to exclude other types of visual-based methodologies. the researchers were aware that the term ‘photovoice’ was broad and could include a lot of bibliographic references. however, this was important as a starting point to obtain a sense of the volume of literature. secondly, to narrow down the search and include the relevant articles, the following search words and phrases were used: ‘photovoice and disability, and research methods, and community based rehabilitation’. to eliminate studies that did not address the research questions, the scoping review adopted the inclusion and exclusion criteria indicated below. inclusion and exclusion criteria both researchers reviewed the titles and abstracts and selected articles that provided an indication of where the application of photovoice included persons with disabilities. where the researchers were in doubt of relevancy, they would review the full articles. disagreements regarding inclusion were resolved through discussion. the inclusion criteria were original research articles (1) that apply photovoice as a disability research method, (2) that were written in english, (3) that were published between 1997 and 2016, (4) that include all types of study designs (e.g. qualitative, quantitative and mixed methods) to get a broad sense of methodologies that can be combined with photovoice and (5) that used photovoice as a research method with various disability topics that are related to cbr. preference was given to published articles over dissertations, conference proceedings, organisational reports or manuals when there was duplication of research. the exclusion criteria included (1) articles describing the main use of photovoice for purposes other than research, such as a pedagogical tool or a health promotion intervention (without a research component), (2) original articles that primarily contained descriptive, methodological or conceptual content (vs. empirical) and (3) articles whose photovoice content is duplicated in another source, for example, conference proceedings or theses. the search was conducted in may 2016 and yielded 6518 articles of which 21 met the inclusion criteria. where a full article was not available, the main author of the article was contacted through email to obtain a reprint of the full article as abstracts may not capture the full scope of an article (badger et al. 2000). the results of the search and those finally included are shown in figure 1. figure 1: flow chart for the selection of articles. charting the data the final selection of the 21 original research articles was then reviewed and information was compiled on a ‘data charting form’ using an excel spread sheet. initially, the following categories of information for each study were recorded: authors, number of studies per year, geographic distribution, research method, sample size, socio-demographic profile, duration of study and types of disability. a limited number of articles had a few of the categories missing. the second author did a blind verification of a random sample of 20% (4) of the articles to check the quality of the categorisation of the charting process. inconsistencies in the charting process were discussed and resolved. secondly, a conventional content analysis (namey et al. 2008) was undertaken to analyse the purposes, main modifications, methodological challenges and outcomes. this was performed by carefully reviewing the articles, highlighting text that appeared to describe these four areas. these data were extracted verbatim and added to an excel sheet for coding. the final codes (themes) were examined, followed by a tabulation of frequencies of each theme. thirdly, direct content analysis utilising the who cbr matrix (who et al. 2010) as a framework to analyse the subject areas addressed by the studies was undertaken. the data were extracted verbatim and added to an excel sheet for coding using the five components of the who cbr matrix (who et al. 2010) as the themes and the corresponding elements as the sub-themes. the five components of the who cbr matrix are health, education, livelihood, social and empowerment. each component has five elements which represent the focal areas of implementation. the frequencies of these themes and sub-themes were then tabulated. ethical consideration ethical approval was obtained from the human sciences research ethics committee at the university of kwazulu-natal (ref no. hss/0646/015d) and approval to collect data was obtained from the research committee at the ministry of health and social services in namibia (ref no. 17/3/3). results collating, summarising and reporting the results a narrative presentation of the results was completed. the numerical analysis of studies included sample size, socio-demographic data, geographical distribution, research methods, types of disability and duration of study. the tables and graphs that were compiled depicted the following: the number of studies published per year, purposes of studies, outcomes and photovoice modifications. this analysis gave a rapid overview and a sense of the main areas of interest and enabled identification of any significant gaps in research. number of studies per year a total of 21 studies were finally selected. from january 1997 to may 2016, the results showed that there was a small but increasing interest in the use of photovoice as a disability research method (figure 2). figure 2: number of studies per year. geographical distribution the majority of the studies were conducted in north america (15), with the balance in africa (3), europe (2) and australia (1). research design photovoice was used as the sole research design in 17 studies. four studies (jurkowski 2008; ottmann & crosbie 2013; russinova et al. 2014; schleien et al. 2013) combined photovoice with another qualitative method (focus group discussion, diary interview, questionnaire, semi-structured interview, observation, care proxy response). only one study (russinova et al. 2014) combined photovoice with mixed-effects regression models. sampling and sample size in 20 of the 21 studies, participants were purposively selected and only one utilised random selection (russinova et al. 2014). the sample size ranged from one participant (bishop, robillard & moxley 2013) to 82 participants (russinova et al. 2014). seven studies had sample sizes in the range of 6–10 participants (agarwal et al. 2015; akkerman et al. 2014; ladonna & venance 2015; newman 2010; schleien et al. 2013; shumba, kloppers & van der westhuizen 2012; tijm, cornielje & kwaku 2011). socio-demographic profile thirteen studies involved mixed genders, one study (booth & booth 2003) had only female participants and one study (clements 2012) had only male participants. four studies did not define gender. there were 14 studies which used adults over the age of 18 years. only one study clearly defined using children with ages below 18 years, whereas four studies did not clearly define the age ranges. two studies had mixed age ranges, that is, adults and children both below and above 18 years old. types of disabilities photovoice was used with a range of persons with various disabilities; 10 studies included persons with physical disabilities and eight studies included persons with intellectual disabilities or autism. photovoice was primarily used directly to elicit the responses of persons with disabilities; however, in one study (lassetter, mandleco & roper 2007), it was used with parents of children with down’s syndrome and in another (rampton et al. 2007) with siblings of children with down’s syndrome. it was also used in one study with persons with visual and speech impairment (lassetter et al. 2007). although photovoice relies heavily on visual perception, three studies included persons with visual impairments (agarwal et al. 2015; bishop et al. 2013; cordova et al. 2015). duration of studies the duration of the reviewed studies ranged from 2 weeks to 2 years. the majority of studies (11) were conducted in periods ranging from 2 weeks to 3 months. six studies did not define the duration. purpose addressed the studies had various purposes that they addressed as shown in table 1. thirteen of the studies investigated life experiences of persons with different types of disabilities. however, some of studies addressed more than one purpose. table 1: purposes addressed by studies. application and modification of wang and burris’ (1997) original photovoice methodology the modifications of the photovoice method that were utilised and corresponding reasons are shown in table 2. all 21 studies used the methodologies proposed by wang and burris (1997) with or without modification. of the 21 studies, 6 studies followed wang and burris’ (1997) traditional photovoice method without any modifications, and the remaining 15 studies modified the method. the main modification implemented was substituting collective group interviewing with individual interviewing of participants. table 2: application and modification of original photovoice methodology. methodological limitations and challenges the studies encountered various methodological challenges as shown in table 3. almost all studies (18) revealed small sample size as the greatest limitation in allowing for generalisation of results. other main challenges encountered were as follows: need for assistive technology or assistants for those with more severe disabilities (8 studies), ethics of taking photographs of human subjects (6 studies), communication skills (5 studies), verbal articulation skills in explaining the meaning of photographs (4 studies) and need for sign language interpreters for the deaf (4 studies). table 3: methodological challenges. outcomes of using photovoice with persons with disabilities figure 3 shows the range of outcomes achieved by studies and this confirmed consistency with the view that photovoice is an effective tool to be used with persons with disabilities and caregivers for eliciting concerns and communicating these to relevant stakeholders. seventeen studies revealed that photovoice had a positive effect on empowering persons with disabilities. figure 3: research outcomes. subject areas addressed the studies addressed a range of subject areas as shown in table 4. when the subject areas were analysed using the cbr matrix (who et al. 2010), the studies investigated subject areas that were in line with all the cbr components and corresponding elements. only two elements were not investigated, including prevention under the health component and culture and arts under the social component. noteworthy is that all studies addressed the empowerment component with particular focus on communication and social mobilisation. other study areas that were addressed consistently were personal assistance (11 studies), rehabilitation (8 studies), social protection (7 studies) and self-help groups (5 studies). table 4: subject areas addressed in line with community based rehabilitation matrix (who et al. 2010). discussion the review provided insights on the use of photovoice as a disability research method, the value of utilising it for eliciting the experiences of persons with disabilities and its role in monitoring and evaluating cbr. a search of original studies on the use of photovoice as a disability research method yielded only 3 studies in africa, with only one study in southern africa. a majority of the articles reviewed were from north america, a similar finding with previous two scoping reviews (hergenrather et al. 2009; lal, jarus & suto 2012). further, the review indicated a small but increasing interest in the use of photovoice as a disability research method between 2003 and 2016. the limited use of photovoice as a disability research method in africa and, in particular, southern africa can possibly be attributed to lack of knowledge on the application of the method. we further attribute this to limited research funding allocated to graduate and research programmes in africa and limited value placed on monitoring and evaluation of disability programmes. despite limited use of photovoice in the disability field, it is important to note that there is extensive utilisation of photovoice as a research method with many other populations in southern africa including hiv and aids, maternal health and gender-based violence. a majority of the studies reviewed (17) utilised photovoice as the only data collection method with only four studies (jurkowski 2008; ottmann & crosbie 2013; russinova et al. 2014; schleien et al. 2013) combining photovoice with another qualitative data collection methods (focus group discussion, diary interview, questionnaire, semi-structured interview, observation, care proxy response). two studies used a mixed method approach with one (russinova et al. 2014) combining photovoice and quantitative design and the other (cordova et al. 2015) combining photovoice with cbpr design. the use of photovoice as the only qualitative approach by most studies reviewed in this study seems to be a ‘one-size-fits-all’ approach that is not congruent with the diversity of persons with disabilities and evaluation standards. to this end, evaluation of the cbr programme in namibia can be enhanced through adding the photovoice method to the already existing quantitative monitoring and evaluation methods. given that the current quantitative data collection for cbr in namibia is not comprehensive (shumba & moodley 2017), photovoice can potentially enhance the end result of monitoring and evaluation of the cbr programme. non-probability (purposive) sampling dominated in most studies reviewed. notwithstanding the value of purposive sampling, it potentially falls short on selection bias and this may create a threat to the generalisability of the findings. further purposive sampling does not provide a sample that is representative of the population and thus does not allow transportability of results. to this end, combining purposive sampling and random sampling in a mixed method approach (russinova et al. 2014) has the potential of enhancing the quality of results in evaluation frameworks. sample size ranged from one participant (bishop et al. 2013) to 82 participants (russinova et al. 2014). only seven studies had sample sizes in the range of 6–10 participants (agarwal et al. 2015; akkerman et al. 2014; ladonna & venance 2015; newman 2010; schleien et al. 2013; shumba et al. 2012; tijm et al. 2011). the sample size of 6–10 participants is consistent with the sample size originally proposed by wang and burris (1997). this flexibility in sample size indicates that photovoice has evolved as a flexible method that can be applied with any sample size depending on the context. the nature of cbr programmes in small communities of namibia naturally limits the sample size in relation to socio-demographic variables including gender, age groups and disability types, and thus, photovoice is an appropriate research method of choice. another insight revealed by this review is that photovoice was used with a range of disabilities. although photovoice relies heavily on visual perception, three studies included persons with visual impairments (agarwal et al. 2015; bishop et al. 2013; cordova et al. 2015) given that visual impairment covers a spectrum of impairments from low vision to blindness. these studies proved that photovoice is not discriminatory and thus suitable for cbr evaluation that promotes principles of diversity and inclusion. the duration of the study is usually critical to detect trends in data. this review did not identify a consensus on the desired duration for a photovoice project with the duration of studies ranging from 2 weeks to 2 years. thus, the duration may be determined by the establishment of set objectives of the study. with the evolution of photovoice, modifications were suggested to meet the specific aims of different studies. in this review, 15 studies had modifications to the original photovoice process. the main modification in these studies was the replacement of collective group discussion with one-on-one interviews in photovoice analysis, when required. this was to provide participants with confidentiality and freedom of expression when providing narratives regarding their photos without being influenced by others (newman 2010). free expression of views by persons with disabilities is one of the principles of the cbr programme (who et al. 2010). furthermore, interviewing persons with disabilities in their homes potentially creates a safe environment that does not only ensure free expression but also enhance confidentiality. notwithstanding the potential of utilising photovoice for eliciting the experiences of persons with disabilities, there are some methodological challenges that need to be noted (table 3). the photovoice process is complex and involves in-depth investigation that validates the use of a small sample. however, small sample sizes have major challenges and limitations of not allowing generalisation of findings. other critical challenges to address include assistive technology or assistants for those with more severe disabilities, ethics of taking photographs of human subjects, advocacy skills training and the need for sign language interpreters for the deaf. the conventional content analysis (namey et al. 2008) of the purposes and outcomes of the studies indicated the value in the use of photovoice method in eliciting the experiences of persons with disabilities. of the 21 studies reviewed, 13 studies investigated life experiences of persons with various types of disabilities in subject areas of rehabilitation services, community accessibility and caregiver care (table 1). further, direct content analysis using the cbr matrix (who et al. 2010) as the framework of analysis indicated that photovoice may be used with persons with disabilities to elicit their experiences regarding education, health, livelihood, social and empowerment (table 4), which are consistent with the who cbr guidelines (who et al. 2010). to this end, photovoice has the potential to be utilised for eliciting the experiences of persons with disabilities with respect to these five components of the cbr matrix. thus, these results, though they were not from direct cbr evaluations, indicate the opportunity for using photovoice in monitoring and evaluating cbr in line with the cbr matrix. the cbr matrix has the potential of empowering persons with disabilities as they are resolutely underpinned by the uncrpd (united nations [un] 2006) that promotes the social and human rights model of disability. under the aegis of article 31 of the uncrpd (un 2006), rehabilitation programmes, including cbr, should be evaluated to determine their effectiveness and relevance. cbr evaluation should not only include quantitative measures such as types of disabilities and number of assistive devises distributed but also include qualitative measures that include the experiences of the beneficiaries of the cbr programme. however, the discourse surrounding evaluating cbr programmes has largely been influenced by the evolution of the concept of disability. the medical model viewed persons with disabilities as patients or recipients of services and their concerns were not solicited or considered to have any merit. with the emergence of social and human rights models, cbr practitioners are required to consult persons with disabilities regarding their opinions and needs. further, the refrain by persons with disabilities of ‘nothing about us without us’ and article 32 of the uncrpd also stipulates that persons with disabilities should be consulted in services in which they are involved (un 2006). of the various evaluation tools, photovoice is an appropriate method to elicit qualitative experiences of persons with disabilities to adequately represent the benefits, shortcomings and challenges of cbr programmes. building on this premise, this study demonstrated that photovoice has the potential to meet the cbr principles of participation, inclusion, sustainability and self-advocacy (who et al. 2010) as illustrated in figure 3. as cbr is the main strategy for delivery of rehabilitation services in namibia (government republic of namibia 2007), it is essential to have an effective monitoring and evaluation tool and photovoice can meet this requirement. photovoice with the suggested modifications to suit specific requirements of disability groups is a practical qualitative evaluation tool that can record the social realities of persons with disabilities that are often not accessible and revealed to cbr evaluators or researchers and are sometimes disregarded by family and community members. disability data gathered in most health information systems are mostly quantitative and fall short on extracting the true essence of the concerns of persons with disabilities. thus, findings from photovoice can be used as cbr qualitative indicators that can potentially improve the provision of services and be included in reporting to relevant national and international agencies. qualitative data complementing quantitative data can lead to the development or evolution of disability policy and legal framework, increasing opportunities of providing policy-makers with evidence of the real concerns of persons with disabilities. many persons with disabilities have not benefited from equal educational opportunities and as a result are not as literate as their able-bodied counterparts, thus making use of questionnaires poses a challenge for monitoring and evaluation. thus, photovoice can help alleviate this challenge especially in areas with a low literacy rate amongst persons with disabilities. further, photovoice equips persons with disabilities who have limited verbal or expressive abilities with an alternative form of expression, thereby increasing opportunities to engage in the evaluation process (levin et al. 2007). cbr programmes aim to empower all persons with disabilities. historically, persons with disabilities, as many in the apartheid and post-apartheid environment, were not used to having a voice and sharing concerns. photovoice helps persons with disabilities to identify their concerns, potentially building their confidence through linking them with their peers. various disability groups benefitting from the cbr programme can possibly have diverse concerns, and photovoice has the potential to help them to come up with a consolidated viewpoint on shared or cross-cutting concerns, as well as identifying those which are specific to their disability. wang and burris (1997) argued that photovoice has a framework that embodies participatory principles. participatory principles are one of the cornerstones to cbr programming and evaluation. this study mainly focused on the potential role of photovoice as a research method in eliciting the experiences of persons with disabilities. future studies can investigate the extent to which photovoice can be situated in the context of community participation and/or community-based research including engagement of the participants in the identification of the research purpose or question or problem. under the aegis of article 32 of the uncrpd, persons with disabilities should be consulted in services in which they are involved (un 2006). this coincides with the vision of the national policy on disability (government republic of namibia 1997) that advocates for a ‘society for all’ that promotes participation and human diversity in one economy. despite this study adopting aspects of systematic reviews, there was no attention given to the quality of data. future research can potentially focus on systematically reviewing the use of photovoice as a disability research tool to strengthen its effectiveness. conclusion it appears to be clear that cbr practitioners need to explore best practises in cbr for monitoring and evaluation in order to show evidence of the effectiveness of this strategy and to identify areas for improvement. for the cbr programme in namibia to grow and evolve, the monitoring and evaluation process needs to be adapted to the needs of persons with different disabilities. photovoice creates an opportunity for persons with disabilities in namibia to have their concerns heard and documented and ultimately reach policy-makers. further, photovoice can help alleviate the challenge and inefficiency in utilising the current questionnaire-based monitoring and evaluation of the cbr programme in namibia, especially in areas with a low literacy rate amongst persons with disabilities. future research can potentially focus on outcomes of photovoice as a change agent. additionally, research is needed to establish the conditions under which photovoice can be used to elicit the experiences of persons with disabilities on the cbr programme. the insights proposed in this review may provide guidance on how to use photovoice as a disability research tool and its potential use in cbr monitoring and evaluation utilising the who cbr matrix (who et al. 2010). acknowledgements the authors would like to thank the journal reviewers of this article and mr. david hughes, a disability consultant in namibia, for his invaluable contributions. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.w.s. was the project leader responsible for project design, data collection, data analysis and preparation of final report. i.m. made conceptual contributions and contributed to the preparation of the final report. references agarwal, n., moya, e.m., naoko, y.y. & seymour, c., 2015, ‘participatory action research with college students with 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haunting story 2: thirst, a vampire story story 3: constitutional closing remark acknowledgements references about the author(s) rose richards language centre, division for teaching and learning enhancement, stellenbosch university, stellenbosch, south africa citation richards, r., 2025, ‘three short stories of kidney disease in south africa’, african journal of disability 14(0), a1683. https://doi.org/10.4102/ajod.v14i0.1683 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper three short stories of kidney disease in south africa rose richards received: 14 feb. 2025; accepted: 14 aug. 2025; published: 30 nov. 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. everyone has three lives: a public life, a private life and a secret life. (gabriel garcía márquez quoted in martin 2010) introduction leslie’s mentorship and influence in my research cannot be underestimated. he was the person who urged me to undertake a doctoral study instead of only writing a short piece regarding my experience of kidney disease. he became my doctoral supervisor and the many conversations we had over the years about the theoretical and practical aspects of my work helped me to shape and refine my ideas. he gave me free rein to be creative, to discover and to play with ideas, something for which i cannot thank him enough – for this allowed me to find my voice and my self-belief. thanks to him my phd was exciting, enriching and opened intellectual doors for me. i started using autoethnography as a methodology during my phd on my own experience of narrative and identity in kidney transplantation (richards 2012). autoethnography is a qualitative research methodology where the researcher uses their lived experiences as part or all of the research. this is particularly useful for advocacy research about the experience of disability and other circumstances where the ‘subjects’ of research are often othered or silenced in different ways (denshire 2010; spieldenner 2014). they are seldom heard to speak or seen to act, but instead are spoken about and acted on. seeing the complexity of marginalised people’s experiences humanises them to mainstream people and this can help mainstream people with access to resources and power to change situations or to change how they treat those others (ellis, adams & bochner 2010; richards 2012; sparkes 1996; spieldenner 2014). it changes the power relationship (pratt 1992). as people learn to understand each other better, this creates an environment where the chance for hermeneutic and testimonial justice (fricker 2007) becomes possible. furthermore, as a person with an education and training in research, i have a voice that other researchers may listen to. autoethnography can be conducted through different media, such as performance, visual art or creative writing. in autoethnography, the use of creative writing is called evocative autoethnography (ellis et al. 2010); and this is what i chose to use. its value lies in that it makes the narrator’s experience emotionally and imaginatively accessible and immediate for readers (ellis et al. 2010). through this, readers may be able to imagine how they themselves could experience such a situation. evocative autoethnography can also play with narrative constructs and narrative forms to change or trouble meanings and identities (richards 2012). the use and value of creative writing methods in dealing with issues of health experiences and access also includes presenting information in a novel way that can be thought-provoking to a reader. i had wanted to write about my own life-long experience of kidney disease to provide an insider perspective of a person living with kidney disease to counterbalance and enhance the more traditional research studies. for instance, my dissertation was written from the perspective of a long-term kidney transplant recipient reading literature on kidney disease and navigating the long-term vicissitudes of her condition. many of the transplantation studies i read concerned the experiences of people who had received transplants a year to 5 years before. long-term was considered to be 9 years. at the time, i had had my transplant for 20 years. following the completion of my phd i wrote articles about different aspects of living with chronic illness and disability, for instance, the hidden shame and hardship of having an invisible condition that cannot be cured while working in academia (richards 2019). my work always used autoethnographic approaches and blended personal writing with more traditional research writing to create a hybrid voice that represented my experience and understanding of a complex situation that has both an external appearance and an internal experience. my piece of writing in this special issue differs from my previous work in that it is entirely creative writing, with no analysis. it also alludes to some recent changes in my condition. i chose to write it this way because i want to capture how i experience living with an incurable condition in a country that is medically under-resourced and where people every day die from a disease that cannot be cured but can be treated (abd elhafeez et al. 2018; barsoum, kahlil & arogundade 2015; davids et al. 2021). i consider the impact of the soobramoney case (constitutional court south africa 1997, 1998) through my personal, human response to it. this case was a landmark south african case where a man in kidney failure was denied dialysis because of constrained resources (davis 2004). in my piece, i play off the gut-punch this outcome caused me, a person living with kidney disease, against the cold, emotionless legal documents about the case. the legal documents show how ‘the problem’ was ‘solved’ and assert that ‘everyone’ found this fair and satisfactory. but these types of decisions have terrible consequences for real people. here are three parts of my story. story 1: ghost body a haunting my story is written on my flesh. it’s in my bones and in my blood. it’s on my face; in my bushy eyebrows and my puffy cheeks. the signs are there for all to read, but most don’t know how to. when i’ve told my story or written about it in academic terms, i have talked about how kidney disease made me feel and what i feared but my body has seldom been part of the story. it’s always remained a dull haunting presence in the background just out of range. how could i tell the story of my chronic kidney disease without talking about what it did to my body? after all, who are you without your body? and yet i have been doing it for years. my story has been a story of interpretation – how i understand what happened to me – and somehow in all of this thinking, i made my body disappear. but which body? my body is doubled. not like a matryoshka doll, but as if a different half-remembered body self was infused through my limbs, occupying the same space, eating the same food, breathing the same air, flinching with cold and trembling with fatigue when the stronger more corporeal body does not, shying away from needles that should no longer bother it, feeling that unquenchable ghostly renal thirst even though mine is long slaked. blood, sweat and tears the disease, you see, was in my blood. it came from the outside, they said. but we never found out how. i was too young to remember, and my mother told me stories and i’ve read about it in medical reports. but my body remembers. my body leaks its story through its own orifices and through those made from outside. needles have left pits in arms, in neck, dents in thighs where the muscles atrophied from the jabs. it shies away from the needles still. my body cries, not always from grief. my right eye waters because of a faulty tear duct. both tear up in the sun, the cold, the heat. that might be because of the measles i had when i was nine. whatever the cause, the salt tears always taste the same. my body oozes life. it’s always leaked. i replace the fluid all the time. you’ve got to keep the balance. fluid out, fluid in – the opposite of what we were taught on dialysis to protect our hearts from drowning. i’ve bled through my wounds, both big and small. i’ve bled from my nose. my bowels have bled. i’ve bled on my brain (twice). i’ve bled in the month. i’ve bled so much, i had to have surgery to stop it. my nose blood vessels had to be cauterised. once a pinprick blood test took 20 min to stop bleeding. for the first 2 days after my transplant, i had to be packed with wadding and bandages to stop my operation site from bleeding. i could feel warm blood trickling down my right flank under the packing and seeping into the incontinence sheet. this was because of vitamin k to prevent clotting because i had a small stroke in theatre, a tiny blood clot in the part of my brain that controls the right side of my face. thirty years later, the right side of my face is still weaker than my left when i get tired. i can feel it sag, like a silk bag with syrup in it, or melting like lukewarm wax down my bones. i can feel my blood pounding in my throat, see my heart beating on the wall of my chest. remember me, it warns. remember my injuries. the hole that blew through my heart’s wall when i was a baby. the virus that burned through me after transplant. my heart skips a beat sometimes, like a hiccup. sometimes like the sea drawing back before a big wave. usually it murmurs, but i can’t feel that unless i have too much tea. blood in, blood out. blood out, blood in. i’ve had three transfusions, but i only remember the last one. it was very slow, and the blood prickled as it oozed into me. i speeded up the flow and my skin erupted in bumps. my body didn’t recognise the blood and shunned it. i’ve leaked urine too. for samples, through a catheter and all by myself when my muscles grew too weak to keep it in. it flowed out if i laughed too hard or jumped too much. it was pale, like water. and i’ve drained fluid from my gut cavity through a catheter for almost a year, four times a day, every day. i’ve run it in, and i’ve drained it out. it would run in transparent but bending light and would run out stained yellow with waste and garlanded with swirling egg white protein strands. i would cut the bag open and splash it into the toilet to flush it away. but i still peed water. i’d flush that away too. blood, bones and skin my body hates blades. it has scars that run from left to right, up and down. there is a large z across its stomach from 4 scars – my zayin, my weapon of the spirit. there is a sun boat, a mandjet, on its throat from where its thyroid used to be. there are tiny pockets from chicken pox and short snips from skin biopsies. inside are gummy adhesions and a large scoop on the lower left abdomen from a surgery unrelated to my kidneys. in some places near my dialysis catheter site my fingertips can feel the membrane edges under the skin, scarified sharp and hard. my skin is thin. my veins show silver-green beneath it. my capillaries show red. my bruises show in purple, grey, green and yellow. small cuts bleed a lot. my bones are thin too, after years of prednisone. some are a third thinner than they should be at my age. they haven’t all thinned at the same rate. some of their honeycombs have bigger spaces. i’ve never broken anything. yet. but they used to be like lead, too heavy to drag around, a heavy metal clotheshorse that had little on it, that lost the clothes it was supposed to keep safe. if i could have parked my skeleton somewhere on campus i might have moved around more easily. my joints ached. it started with my ankles – the left one to be precise. gout when i was nine. i could feel it burning through my skin. ten years later just aching in my large joints, no heat. just a coldness that made me want to sit down and not get up. after the transplant and after the rejection episodes and after the massive cortisone blasts that went with them, my knees swelled so much that i couldn’t bend them past 30 degrees. they felt like coals on fire. they still ache. i imagine that the bones swelled as they heated up and then cooled like lava into wrong shapes. skin and blood different shades of red. reds. metallic smell. meaty smell. the last nosebleed i had made everything smell like a butchery. my blood got darker with time and (to me) more sluggish. crimson to ruby to wine. it was clotted currant jam. it dried burnt brick. carmine or scarlet. not hot enough for cinnabar. not cool enough for mahogany. red is life and death, love and hate, passion. it is the colour of danger. in ancient egypt, it meant life, and also chaos. sekhmet’s blood lust turned by wine to slumber. seth’s rage against his brother, osiris. red is the colour of magic. my inner ocean is red. my heart is the moon that controls its tides. blood in, blood out. no. my kidneys are the moons, all three of them. they control the tide. or is it my lungs? breath in, breath out. i used to fear falling asleep as a child in case i stopped breathing. for a while i controlled the tide with dialysis: fluid in, fluid out. four sterile bag changes every day for almost a year. the ritual for tide-controlling: heat the bag, but not too much. after washing up to the elbows, anoint hands with pink hibitane. prepare the table and marble slab with acrid hydrogen peroxide, take the bag out of its sterile cover and place the bag on the slab. hibitane hands. open the bag. hibitane hands. undo the old bag and attach it. hibitane hands. run in the bag of clean solution. it takes about half an hour. lie on the bed and watch it run in while i read. control the flow with the catheter’s v-track controller. not too fast (burning), not too slow (cramps). five or 6 hours later, drain out the fluid, now yellow and stringy with albumen. it takes about an hour and a half. lie on the bed and watch it run in while i read. fluid in, fluid out. skin and bone over the years i have become solid, from a faded, yellow ghost girl with dark rings under her eyes and ribs to count up into her armpits, to an ample, flowing woman, doughy arms, rolling stomach, milky skin. from hair that didn’t grow for a year and nails that flaked to curly hair that i cut myself in lockdown surprisingly often. my nails still flake and tear. i should diet. i have become quite overweight. and yet i don’t. i eat as much as i can, of all the things i couldn’t eat growing up. i’ve done it for nearly 30 years. energy in – but little energy out. who knows when i might need it? i feel stronger in my heavy body, rooted to the ground, not afraid of the wind. i can use my weight to push things. inside my fat body is a thin woman who can never get enough food. i was once so thin that i could have sworn i could see through my hands if i held them up to the light. i couldn’t taste food. it had no flavour. i forced myself to eat, but i could not eat enough to prevent my flesh wasting away. my skin sank into the furrows of my hand bones. the knuckles bulged and the flesh withered. my collar bones pitched tents underneath my shoulders. i bruised if i sat on hard surfaces. i dressed from the children’s department. i can feel that ghost girl’s eyes on me when i eat, hear her saying, ‘i wish i could eat prawns. they are full of cholesterol, you know’. my arteries know. life and death what will happen if my haunting body and haunted body become aware of each other? will the solar and lunar barques collide or were they always the same boat? will one of me die? or will i descend like the green god, osiris, to the underworld, re-membered, re-embodied, put back together again? since i was 2 years old i have often thought of how it will be when you die. will you rot away, burn away, melt into the earth? will your body become a home for beetles and worms and your bones a shelter for birds? or will you be ash and dust? i know how decomposition works. i’ve known for years. it used to disgust me, but i had to find out. i used to want to be cremated to avoid the swelling, the oozing and the putrefying. now i think i’d like to lie down in the earth and go back to her, become part of the world again, seeping into the soil, feeding the creatures, helping make things grow. story 2: thirst, a vampire story go down in the twilight. go down to your room, to your bed in the quiet. in the cold shadows keep still. lie down on your bed. sleep again. dream of blood. dream of drinking blood, warm and thick, flowing over your tongue and down your chin. gulp it down. it warms you up and makes you live again. feel it on your palate and in your throat. feel it hitting your stomach like a blessing. watch the people, but don’t walk among them. you – the real you – can’t be seen in daylight. you have learned only to be seen from a distance so that you still look normal and alive. you are not alive. not dead, but not alive. you are undead now. it has been coming for some time. who do you see in the mirror when you look? you cannot see yourself. do you see who you once were or who you will become? you learn to cover up the shadows under your eyes and to dust on the rouge for living colour. things don’t taste like themselves anymore. everything tastes of metal. your throat doesn’t want to swallow them. you feed off the memories of tastes and the dreams of blood. your legs swell with water and the fluid creeps up to your lungs. you can’t wake up in the daytime and you are cold, so cold, even on summer days. your flesh has melted off your bones. your gossamer muscles are too weak to drag your leaden bones around. you are tired, so tired. your skin is pale powder yellow now, shiny with sweat, and the insides of your eyelids and your gums are white. your gums bleed often, so your mouth always tastes bloody, but not with the joyfulness of dream blood. your heart hiccups. when it does this the adrenalin spike makes you sweat, like a memory of fear, dimly remembered down a tunnel. there are bruises on your arms and legs. some from bumps and some from needles. the veins in your arms are scarred. some scars are small, needle pricks in clusters. different sizes because over the years your nurses and doctors have hit the same marks. one of your veins is sclerosed. it looks distended, perfect for puncturing, but it isn’t. you know how to read veins. you know yours from the inside. the medics always think they are helping you by picking it, because it’s on your left arm and they see you are right-handed. but they aren’t helping you and you know that having your blood taken from your right arm doesn’t affect your writing. it’s your hand that gets tired, not your arm. the fog in your brain is like the twilight in your heart and the shadows under your eyes. everything is grey. you sleep like the dead, on your back, unmoving for up to 14 hours at a time. you used to want to fight to live, but now you realise that death is natural. sometimes you look forward to it. your body knows that it’s dying. and yet, you remain stuck in the twilight. you tell your mother and your friends that you are fine – but you’re not fine. do you smell like death? you can’t tell. your mother says your breath smells like rotting fruit. you carry mothballs in your pockets because you can smell them and you like the smell. it’s interesting to your starved senses – faint, but interesting. you dream of giant writhing maggots. they emerge from two septic-coloured yams on your bed. you fight the maggots with a sword, but each time you cut them they grow a new head. you get smaller as they get bigger. you can’t win, but you keep on fighting. sometimes you sleepwalk. sometimes you don’t. you awake on your back, freezing cold, with your hands folded on your concave stomach, like a church effigy. story 3: constitutional i was sitting on the couch next to my mother one evening in 1997 watching the news on television (tv). our living room was a cheerful yellow, with blue couches and five sets of bright windows looking out onto a warm evening where the sun hadn’t set yet. birds were roosting in the trees. cars were coming home to their garages. neighbours walked their dogs and greeted each other in the street. workers were walking home down the hill to the taxi rank, calling to each other. it was the end of a long, hot day of this and that, some casual work, some social things, grocery shopping, household chores. mom and i were working in a supermarket. she was manager and i did back-office admin. in 1997 national aeronautics and space administration’s (nasa) pathfinder space probe had landed on mars, princess diana had died and the kyoto protocol had been adopted by a united nations (un) committee to establish a global legal framework on climate change. south africa had a new constitution and a new national anthem. the truth and reconciliation commission was in full swing. but there was one news item i had followed religiously through several months – the case of thiagraj soobramoney versus the minister of health. mr soobramoney, who lived in kwazulu-natal (kzn), was petitioning the constitutional court for the right to receive dialysis in the state medical system. he could not afford to pay for dialysis, and he did not have sufficient medical cover to allow him private care. his plea for help had reached the highest court in the land and made it onto national news. today his case is known as the first socio-economic rights case in the country. i never met mr soobramoney. i learned from tv that he was a 41-year-old father of three teenagers. i learn today from the constitution’s webpage that he was ‘a diabetic, unemployed man’ who had ‘suffered a stroke’. the page further observes that he was ‘in the final stages of chronic renal failure and his condition was irreversible’. we are very proud of our constitution; it has its own website. the webpage devoted to his case asks: ‘in a constitutional democracy where the right to access healthcare is protected, can a hospital refuse a seriously ill patient treatment because of a lack of resources?’ after months of deliberation, it did. mr soobramoney had gone from the local state hospital to the high court to the constitutional court. the arduous process had taken too long. in the end mr soobramoney had to be trundled into court in a wheelchair, where he drooped as the proceedings droned on around him. he was a terrible greyish colour and looked to me as if he was swelling from fluid retention and struggling to breathe. the news broadcast reported that mr soobramoney had accepted the verdict and that the outcome was a satisfactory one. when i heard the verdict, i felt sick to my stomach. although it was a hot evening, i went cold like years before when i was anaemic on dialysis. my stomach clenched into a ball of fear. south africa was supposed to be a new country where all lives were valuable and everyone mattered. mr soobramoney was sent home to die and 2 weeks later he did die. the news anchor reported with a tinge of dignified melancholy that he had ‘passed away’. what would that passing have been like? a slow and terrifying death over 14 days as he drowned in his own toxins and body fluids. after that, his story did not make the news again. there was no follow up on how his three children were coping or whether there would be an attempt to address the inequity that had caused his death. instead, i heard a series of bland rationalisations about the public sector not having enough funds and that the constitution ‘must go on trying to resolve these problems’. various parties expressed views that they were not responsible for changing the situation. then radio silence. a quarter of a century later, i see no evidence that the problems have been resolved. i know that the vast majority of people in end-stage kidney failure are denied treatment in the south african state sector because of insufficient resources – not enough money, not enough equipment and not enough dialysis technicians. most people in south africa only seek treatment when they are going into kidney failure because of insufficient access to medical care in the earlier stages and late-stage diagnoses. on the constitution’s webpage i read that ‘the court felt his anguish’. did it though? i am certain that the people involved felt some anguish and regret, but i am equally certain they did not feel mr soobramoney’s anguish. how could they? if the only adjectives they used to describe him were ‘diabetic’ and ‘unemployed’ i doubt they really saw him. i can hear in how they describe his condition that they must not have had personal experience of kidney disease. after all, kidney disease is generally irreversible. it cannot be cured, only treated. and time is of the essence. it took months for him to be heard in the constitutional court, during which i doubt he was receiving any treatment. but back to 1997. it was, as i mentioned, a warm evening. the windows were open, and a slight breeze fluttered the edges of the cream-coloured curtains. i had been well for 6 years. i had moved to the other end of the country away from johannesburg and the years of struggling to survive. i looked normal. down in the western cape no one i met knew that i had had a transplant. they just treated me like a normal person. i worked, i spent time with family, took french classes, walked around town to the shops, to the library, with ease. when mr soobramoney had been denied treatment, i hoped a benefactor would take pity and step in – but none did. i knew, when i saw him slumped in his wheelchair, that it was too late. but still i hoped. for the months that i had followed the case in the media my stomach had been clenching tighter and tighter. now it was a screwed-up ball of aluminium foil. fear trickled through all my blood vessels and ran chilly fingers down my spine. it knotted my muscles in my arms and clenched my fists. i could hardly breathe. the summer evening had grown cold and dark. would that be me? six years before, a doctor had told me that the transplant would likely buy me another 10 years. he seemed impressed by the extra decade; i had hoped for longer. now, some years later and off dialysis after the transplant, i didn’t have medical insurance because my job didn’t pay enough. i was a state patient. i calculated my age in 4 years: 31. i weighed the odds: no other medical conditions. maybe i could get back on the transplant list. it could take years, but i could do it. i’d have to move to cape town though because there was no dialysis centre where i lived. the calculating and weighing helped stop the ghostly fingers, but my stomach stayed knotted in a ball. and inside me i felt the ghost girl unfurl, like a dry leaf in water, stretch out her bony fingers into my warm ones, her heavy bones settled into my living bones, her cold pale flesh infused through my flesh and whisper a song through my blood that tingled through each of my scars, pocks and needle marks. my zayin was no defence against her. my sun boat sunk. ‘let us sleep’, she said, our hands clasping over our cold bellies. closing remark in 2024, after 33 years, my transplanted kidney failed suddenly and unexpectedly. i am now on haemodialysis three times a week for the foreseeable future. at present, my life revolves around dialysis. i am on disability leave from work and i seldom have the energy to do more than basic things. i have access to dialysis because i work in a job where i earn a salary that allows me to afford medical aid. i would not be able to afford dialysis otherwise. it’s very expensive. how do i feel about my condition now? it’s too soon to say how i feel, after the thing i always dreaded happened. in an online dialysis group i belong to, people are sad and angry about being on dialysis. they define dialysis as the problem. i, however, am grateful that i have access to it in a country where so many people don’t. i have a chance to live, however peripheral and limited that life may be. i am no more valuable or important than any other person, but my life is saved because i have resources. there is something fundamentally wrong with the idea that you get to live because you have resources, while someone less fortunate does not. we no longer have the death penalty in south africa, but routinely people are sentenced to death because they are poor. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution r.r. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s results, findings and content. references abd elhafeez, s., bolignano d, d’arrigo, g., dounousi, e., tripepi, g. & zoccali, c., 2018, ‘prevalence and burden of chronic kidney disease among the general population and high-risk groups in africa: a systematic review’, bmj open 8(1), e015069. https://doi.org/10.1136/bmjopen-2016-015069 barsoum, r., kahlil, s. & arogundade, f., 2015, ‘fifty years of dialysis in africa: challenges and progress’, american journal of kidney disease 65(3), 502–512. https://doi.org/10.1053/j.ajkd.2014.11.014 davids, r., jardine, t., marais, n., sebastian, s., davids, t. & jacobs, j.c., 2021, ‘south african renal registry annual report 2019’, african journal of nephrology 24(1), 95–106. https://doi.org/10.21804/24-1-4980 davis, d., 2004, ‘socio-economic rights in south africa: the record of the constitutional court after ten years’, esr review 5(5), 3–7, viewed n.d., from https://journals.co.za/doi/pdf/10.10520/aja1684260x_137#:~:text=record%20of%20the-,constitutional%20court,resources%20and%20compelling%20medical%20demands. denshire, s., 2010, ‘the art of “writing in” the hospital under-life: auto-ethnographic reflections on subjugated knowledges in everyday practice’, reflective practice 11(4), 529–544. https://doi.org/10.1080/14623943.2010.505721 ellis, c., adams, t. & bochner, a., 2010, ‘autoethnography: an overview’, forum qualitative sozialforschung/forum: qualitative social research 12(1), a10. https://doi.org/10.17169/fqs-12.1.1589 fricker, m., 2007, epistemic injustice: power and the ethics of knowing, oxford university press, oxford. martin, g., 2010, gabriel garcía márquez: a life, vintage, new york, ny. pratt, m.l., 1992, imperial eyes: travel writing and transculturation, routledge, london. richards, r., 2012, ‘“you look very well for a transplant”: autoethnographic narrative and identity in organ failure, transplantation and recovery’, unpublished phd dissertation, stellenbosch university, south africa. richards, r., 2019, ‘shame, silence and resistance: how my narratives of academia and kidney disease entwine’, feminism & psychology 29(2), 269–285. https://doi.org/10.1177/0959353518786757 constitutional court of south africa, 1997, soobramoney v. minister of health, kwazulu-natal (cct32/97) [1997] zacc 17, viewed n.d., from https://www.saflii.org/za/cases/zacc/1997/17.pdf. constitutional court of south africa, 1998, soobramoney v. minister of health, kwazulu-natal 1998 (1) sa 765 (cc), viewed n.d., from https://www.saflii.org/za/cases/zacc/1997/17.html. sparkes, a., 1996, ‘the fatal flaw: a narrative of the fragile body-self’, qualitative inquiry 2(4), 463–494. https://doi.org/10.1177/107780049600200405 spieldenner, a.r., 2014, ‘statement of ownership: an autoethnography of living with hiv’, journal of men’s studies 22(1), 12–27. https://doi.org/10.3149/jms.2201.12 abstract introduction methods identifying relevant studies implications and recommendations discussion conclusion acknowledgements references footnotes about the author(s) naomi w. kingau department of orthopedics and rehabilitation, moi university, eldoret, kenya quinette a. louw department of physiotherapy, faculty of community and health sciences (chs), stellenbosch university, cape town, south africa maria y. charumbira department of physiotherapy, faculty of community and health sciences (chs), stellenbosch university, cape town, south africa citation kingau, n.w., louw, q.a. & charumbira, m.y., 2025, ‘impact of health conditions on daily functioning in kenyan populations: a scoping review’, african journal of disability 14(0), a1456. https://doi.org/10.4102/ajod.v14i0.1456 review article impact of health conditions on daily functioning in kenyan populations: a scoping review naomi w. kingau, quinette a. louw, maria y. charumbira received: 02 may 2024; accepted: 14 feb. 2025; published: 24 apr. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: kenya faces significant challenges in addressing the impact of various health conditions. understanding the functioning problems associated with these conditions is crucial for informing targeted interventions and improving overall healthcare outcomes. objectives: this study aimed to determine the prevalence and types of functioning problems associated with health conditions contributing most to years lived with disability in the adult kenyan population and to identify the international classification of functioning, disability, and health (icf) domains and categories most affected. method: a scoping review was conducted. searches were performed across multiple databases using relevant keywords and inclusion criteria. studies published between january 2006 and december 2023 were eligible. data were extracted from 39 eligible studies using a web-based software application (rehab4all). results: major depressive disorder, human immunodeficiency virus, low back pain and fractures were identified as the leading conditions contributing to functioning problems in kenya. the most prevalent problems included walking difficulties, paraesthesia, various forms of pain and depression. the most affected icf domains were mobility (d4), sensory function and pain (b2) and mental (b1). conclusion: the comprehensive description of functioning problems associated with priority health conditions in kenya can be used to develop targeted interventions to improve health outcomes across affected domains. contribution: this research enhances comprehension of disability burden guiding intervention development and policy formulation for improved rehabilitation and offers a platform for further evidence-based strategies to tackle the country’s complex health challenges. keywords: activity limitation; functional impairment; functional loss; disability; participation restriction. introduction the capacity to engage in daily tasks and actively participate in personal and community activities serves as a crucial indicator of overall population health and well-being (stucki et al. 2018). long-term, short-term, or occasional impairment in functioning (ability to perform activities or tasks in their daily life) resulting from non-communicable diseases (ncds), trauma, ageing and other conditions can significantly impact individuals’ ability to carry out these activities (gyasi, aboderin & asiki 2022). reduced functioning has a negative influence on individuals’ perceptions of their health status (duntava, borisova & mäkinen 2021). consequently, challenges in functioning exacerbate the impact on the perception of health and overall quality of life, particularly for individuals already dealing with morbidity associated with chronic conditions (duntava et al. 2021). morbidity at a national level is often described using global burden of disease (gbd) metrics such as years lived with disability (ylds) (murray & scola 2010). the ylds reflect the total years lived with a chronic condition disease (global health matrics 2018). years lived with disability is on the rise at a faster rate in lowand middle-income countries (lmics), compared to high-income countries (hics) (jesus, landry & hoenig 2019). according to gbd compare (a data visualization tool by the institute for health metrics and evaluation [ihme]), the 2019 gbd in kenya included depression, lower back pain (lbp), hearing problems, gynaecological conditions, headaches, human immunodeficiency virus (hiv), anxiety, iron deficiency, musculoskeletal conditions and oral health. similarly, kenyan population report of 2020 shows that about 1 million people are living with a disability, constituting 1.95% of the kenyan population (kenya national bureau of statistics 2022). therefore, health systems in lmics must adapt to the changing epidemiological landscape characterised by elevated levels of morbidity and problems related to functioning (madden et al. 2012). to equip lmics, the world health organization (who) has initiated efforts to strengthen rehabilitation as a primary health strategy aimed at addressing functioning problems (stucki et al. 2018). these who initiatives include a set of evidence-based rehabilitation interventions that should be given priority for integration into health systems (rauch, negrini & cieza 2019). in addition, the who has introduced the rehabilitation competency framework (rcf) to ensure that the rehabilitation workforce possesses the necessary skills and capabilities to address the rehabilitation needs of their respective populations (mills et al. 2021). recognising the diverse healthcare experiences and rehabilitation requirements across different countries, it is important to develop country-specific functioning profiles to effectively plan and integrate rehabilitation services into local health systems. prioritisation is essential because of the limitations of resources, making data crucial in the decision-making process. integrating rehabilitation into the health systems of lmics poses significant challenges. using kenya as an illustrative case, despite being classified as a middle-income country, it grapples with a substantial disease impact, including both communicable and ncds (ministry of health 2021). the health system in kenya faces constraints and fragmentation, with rehabilitation services being available mainly in national, county, and some sub-county hospitals (ministry of health 2021). a 2019 survey conducted by the ministry of health on rehabilitative services revealed that kenya has less than 1500 rehabilitative professionals spread across national, county and some sub-county hospitals, despite the population reaching approximately 54 million (who 2019). this shortage significantly impacts the quality and accessibility of rehabilitative services, leading to unmet needs. the private health sector provides healthcare services to a very small percentage of the population in kenya (world bank 2022). the majority of the kenyans living in poverty receive healthcare from the public sector. which uses 9.5% of the allocated national healthcare budget (world bank 2022). the limited public sector resources have to fund many competing health needs considering the high burden of disease (charumbira et al. 2022a). kenya’s prevalence of multimorbidity is at 28.7% of the 54 million and is associated with varying degrees of disability and functioning problems (kenya national bureau of statistics 2022; mohamed et al. 2019). disability and issues with functioning often go unaddressed, particularly within primary healthcare settings where there is either a limited or non-existent rehabilitation workforce (ministry of health 2020). thus, integrating rehabilitation services will require strong advocacy supported by appropriate national-level data on functioning needs to inform cost-effective and contextually relevant service planning. kenya is currently reforming towards a universal health coverage (ministry of health 2020). the rehabilitative and assistive technology strategic plan 2022–2026 within universal health coverage promises that disability and rehabilitation services will be fully integrated into national, county and sub-county hospitals with a view to enhancing access to care (ministry of health 2020). the international classification of functioning, disability and health (icf) framework provides standard terminology for describing functioning (who 2013). this framework serves as a tool to identify functioning problems, including body impairments, activity limitations or participation restrictions that arise from an individual with a health condition interacting with contextual factors such as environmental and personal factors (charumbira et al. 2022a; who 2013). the focus is removed from the health condition an individual presents with, to what they have difficulty doing – for example, being more concerned with whether a person has difficulty walking rather than whether the person has diabetes. the icf framework is aetiologically neutral and serves to classify data on functioning across health conditions (charumbira et al. 2022b; who 2013). comprehensive and comparable data on functioning in lmics, especially in kenya, is limited. existing literature utilising the minimal generic icf set (cieza et al. 2014) is predominantly derived from hics. this potentially lacks generalisability to kenya’s context with constrained access to quality healthcare and unique profiles of conditions leading to disabilities (jesus et al. 2019). instruments such as the washington group short set on functioning may not cover all critical icf domains, potentially resulting in underreporting of functioning problems (mitra et al. 2022). the world bank model disability survey, although more comprehensive, has not been implemented in kenya. current country-level planning often relies on gbd studies (who 2023), revealing a gap in detailed descriptions of functioning problems crucial for planning rehabilitation services. currently, there is a lack of clinical data estimates on the functioning problems of adult populations in kenya. conducting a comprehensive mapping of this data, compared across various health conditions, would offer valuable country-level insights, aiding in the planning of rehabilitation services (gutenbrunner et al. 2018). therefore, objectives of the review were to: (1) determine the prevalence and types of functioning problems (impairments, activity limitations and participation restrictions) associated with health conditions contributing most to ylds in the adult kenyan population and (2) identify the icf domains and categories most affected. this process involved identifying the top 10 conditions contributing the most to yld in kenya using the gbd compare tool and for which evidence-based rehabilitation interventions exist (cieza et al. 2019). thus, existing peer-reviewed studies reporting on the prevalence of functioning problems in kenyan adults diagnosed with any of the top 10 health conditions were searched. the most prevalent functioning problems reported in the studies were subsequently mapped to the icf framework. methods a scoping review was conducted using an adapted framework by arksey & o’malley (2005), with updates from hasanoff et al. (2024), to examine evidence on functioning problems related to priority conditions in kenya. the icf framework guided the review for standardised analysis of impairments, activity limitations and participation restrictions associated with common conditions. the review followed the preferred reporting items for systematic reviews and meta-analyses for scoping reviews (prisma-scr) guidelines (tricco et al. 2018) for reporting scoping reviews. review findings this provides a guideline for the entire review process, to clearly define the the extent of the literature scoping process. in line with the purpose of scoping reviews, our approach was broad, with emphasis on studies that reported on functioning problems in kenya. the review questions what is the prevalence and type of functioning problems associated with health conditions contributing most to ylds in kenya? which are the icf domains and categories affected by the most prevalent functioning problems in adult kenya? eligibility of the research questions was informed by the population, exposure, context, outcome design (pecod) framework (peters et al. 2020). this included the following: population (p) of patients 18+ years exposure to at least one of the conditions contributing to the greatest yld, as indicated by gbd 2019 data context of kenya outcomes (o) was the functioning problems investigated all peer-reviewed study designs (d). (charumbira et al. 2022a). identifying relevant studies search strategy a comprehensive search was conducted between 01 january 2006 and 31 december 2023, across multiple electronic databases, reference lists and key journals, following the approach of a similar study in south africa (charumbira et al. 2022b). databases searched included pubmed/medline, scopus, web of science, ebscohost (cinahl and africawide information), springerlink, cochrane library, science direct, embase and sabinet. the search strategy targeted titles and abstracts. key search terms are as follows: ‘activity limitation’, ‘functional impairment’, ‘functional loss’, ‘disability’ and ‘participation restriction’ used in different combinations alongside the search terms for the specified health conditions. additional terms were added after analysing titles and abstracts, and the reference lists of eligible studies were manually reviewed to ensure thorough coverage. eligibility criteria inclusion criteria literature reported in english; the most common languages for scholarly communication in kenya. availability of full texts. reporting information regarding functioning problems associated with conditions contributing most to ylds in kenya. exclusion criteria the study excluded impairments that were not indicated for rehabilitation such as health-related quality of life studies (focus on the individual’s values and expectations following disease or injury rather than functioning problems in terms of impairments, activity limitations and participation restrictions [charumbira et al. 2022b]). studies lacking prevalence information on functioning problems were excluded. the study did not consider grey literature1 (exclusively sought peer-reviewed published data and). all database search results were transferred to rayyan reference management software. deduplication of all retrieved articles was performed in rayyan prior to the initial phase of screening by title and abstract (charumbira et al. 2022b). screening process the study selection process involved a two-step approach: a single reviewer (n.w.) with the assistance of the librarian evaluated all titles and abstracts of retrieved articles using predetermined criteria to assess their potential eligibility. a second reviewer (m.c.) was consulted for additional input. the initial reviewer (n.w.) conducted a more in-depth assessment by reviewing the full texts of eligible articles to ensure that they contained the necessary information. in instances of disagreement, decisions were reached through discussion and consensus. data charting process and data items data were extracted from all eligible studies through the use of a web-based software application (rehab4all). rehab4all is a customised application that automates the visualisation of functioning problems, facilitating comparisons within and across conditions at the country level. the application enables the electronic entry of information extracted from eligible peer-reviewed publications (secondary data) on functioning problems. the application incorporates automated data synthesis functions, offering real-time outputs on the most prevalent functioning problems within and across health conditions. this feature permits regular updates as more peer-reviewed studies become available. in addition, the application automates the mapping of functioning problems to the icf framework, ensuring consistent terminology for describing function (charumbira et al. 2022a) data extracted included article title, first author, publication year, study design (quantitative studies), age (average or a range), sample population, location (rural, urban, semi-urban), care level (specialised hospital, hospital, primary healthcare, community, rehabilitation facility), gender, health condition (using the international classification of diseases 11th revision (icd-11) and gbd institute for health metrics), multimorbidity, and outcome measures for assessing function, types, and prevalence of functioning problems. synonyms representing the same functioning problem were consolidated by selecting the most common term. for instance, ‘tingling’, ‘pins and needles’ and ‘numbness’ were represented as ‘paraesthesia’. data on the most common functioning problems at distinct recall periods (point, annual or lifetime) were extracted. in longitudinal studies reporting both baseline and post-intervention prevalence, the baseline was defined as the point at which the patient potentially initiates rehabilitation (vollmar, ostermann & redaèlli 2015). this approach was even applied to conditions where rehabilitation follows medical interventions, to provide the worst-case scenario for strategic planning. no author contact was necessary to clarify or complete the data. quality assessment a methodological appraisal to assess the quality or risk of bias in the included studies was not conducted, in accordance with the scoping review methodological framework outlined by levac, colquhoun and o’brien (2010) and supported by hasanoff et al. (2024). data analysis data analysis was facilitated by rehab4all application. this application analysed health conditions, the level of care, the health setting and the study design. furthermore, it analysed the prevalence of functioning problems and the number of articles related to them at the country level. the rehab4all application presented the data through bar graphs and tables, while also mapping functioning problems onto the icf domains in a spider web format. type of functioning problems the types of functioning problems presented in the included articles were classified using the icf framework, with assistance from the rehab4all application. in the icf framework, first-level classifications are represented by letters: ‘b’ for body functions (eight domains), ‘d’ for activities and participation (nine domains), ‘e’ environmental factors (five domains) and ‘s’ for body structures (eight domains). components were coded using icf numbers corresponding to second-level domains, third-level categories and fourth-level qualifiers. the icf classification system categorises different aspects of functioning and disability into various domains and qualifiers. these domains include body functions, body structures, activities, participation and environmental factors. the qualifiers used in the icf include level qualifiers, performance qualifiers and contextual factors. the rehab4all application helped reduce human coding errors. when instances arose where direct coding of the reported functional issue was not feasible, essential concepts from the assessment tool or outcome measures employed for appraising functionality and vulnerability were employed to deduce activity limitation or impairment, following icf guidelines (de moura et al. 2019). ethical considerations this article does not contain any studies involving human participants performed by any of the authors. implications and recommendations after conducting searches across multiple databases, a total of 3665 articles were identified. subsequent removal of duplicate and screening of titles and abstracts resulted in 73 potentially relevant articles. after full text retrieval, 21 additional articles were excluded. a further 13 articles were excluded because of a lack of prevalence information on functioning problems. finally, 39 studies met the criteria for inclusion in our review. the prisma flow diagram (figure 1) comprehensively outlines the selection process for articles at each phase, including specific reasons for exclusion. figure 1: prisma flow diagram. study characteristics sample size totalled to 15620 study participants. the mean age for the sample could not be calculated as some studies did not report age as a mean; instead, they reported either the median or ranges within specific age groups. the studies were distributed across various settings: 26% (n = 10) were conducted at the community settings, 26% (n = 10) in primary healthcare units, 26% (n = 10) in specialised hospitals, and 7% (n = 3) at the hospital level. regarding geographical location, 69% (n = 27) of the studies were conducted in urban area, 23% (n = 9) in rural settings, while 8% (n = 3) did not report on geographical location. a total of 74% (n = 29) of the studies were cross-sectional, 13% (n = 5) surveys, 3% (n = 1) cohort studies, while quasi-experimental studies constituted the remaining 2% (n = 27). conditions associated with functioning problems within the global burden of disease in kenya the scoping review identifies the following top five conditions: major depressive disorder, hiv, low back pain, fractures and osteoarthritis as the main conditions significantly contributing to functioning problems in kenya, as depicted in table 1. the study considered conditions contributing the most to ylds, that were reported in three articles and beyond because of the limited number of articles available for review. table 1: conditions associated with functioning problems. functioning problems the rehab4all application identified 19 different functioning problems through a literature review, irrespective of the prevalence or the number of articles discussing them. these documented problems included mobility, such as walking difficulties (unspecified, long distance), sensory problems including numbness/paraesthesia, as well as various types of pain (back pain, unspecified pain, joint pain) among others (table 2). table 2: functioning problems and the corresponding number of articles. conditions and their associated functioning problems the scoping review articles identified the following top four conditions: (1) major depressive disorder (n = 7), hiv (n = 6) and low back pain and fractures (n = 5 for both). figure 2 illustrates these conditions along with their corresponding functioning problems. figure 2: common health conditions and associated functioning problems. prevalence of functioning problems scoping review identified eight functioning problems characterised by nature and/or body area, mainly associated with major depressive disorder, hiv, low back pain and fractures. the reported prevalence of these functioning problems exhibited a range spanning from 9.9% to 78.1%. in figure 3, an overview of the prevalence is presented, focusing on functioning problems where prevalence data from at least three articles were available. three articles and beyond were considered because of the limited number of studies that were available for review. figure 3: prevalence of 5 top main functioning problems. the most prevalent problems were back pain (78.1%), pain unspecified (56.3%), and significant prevalence was also noticed in numbness/paraesthesia (51.8%). breakdown of the functioning problems into international classification of functioning, disability and health domains sensory and pain problems sensory and pain problems were identified. the highest prevalence of 78.1% was reported for back pain in five articles, and the prevalence for problems associated with numbness and paraesthesia was reported at 51.8% in four articles. mobility problems the most prevalent mobility problems were walking difficulties (45.8%) reported by 15 articles while walking difficulties and long distances (16%) were reported by 6 articles. mapping to the international classification of functioning, disability and health framework functioning problems were mapped by the rehab4all tool to the icf domains and categories using the outcome measures used in the studies (table 3). different articles used different outcome measures to assess functioning problems; for instance, cresswell et al. (2020) used world health organization disability assessment schedule (whodas-12), for functional assessment, while kwobah et al. (2021) used generalised anxiety disorder 7 (gad 7) for assessment of mental disorders. the identified functioning problems covered four of the eight body function domains, one of the eight body structure domains and four of the nine activity limitation and participation domains (charumbira et al. 2022b). table 3: functioning problems mapped into international classification of functioning, disability and health and related outcome measures. mapping of functioning problems among all the functioning problems (n = 80) identified, the majority involved mobility (n = 19), sensory functions and pain 24% (n = 19) and mental 24% (n = 18). likewise, domestic life was also affected 5% (n = 4) and general tasks and demand 1% (n = 1) (figure 4). certain functioning problems extended across multiple icf domains; for instance, housework difficulties spanned across four domains, while dependencies in mobility and joint pain each spanned across two domains. most studies provided ample information, enabling the coding of identified functioning problems up to the fourth level. fourth-level qualifiers were used to specify the exact degree of impairment in functioning, from complete absence of difficulty to a full extent of disability. to illustrate, for added specificity on mobility problems, the activity of lifting and carrying objects was further categorised, such as d4300 lifting. figure 4: mapping of functioning problems. discussion the aim of the current scoping review was to identify and summarise the existing body of evidence from peer-reviewed literature with regard to functioning problems associated with health conditions with greatest disease burden in kenya. when mapped to the icf, the most prevalent functioning problems were related to mobility, sensory and pain, and mental health. the articles included in the review presented environments in both rural and urban settings, offering valuable insights into how functioning problems are influenced by the environment. this highlights the widespread nature of these problems and reinforces the evidence presented by braveman and gottlieb (2014) on the role environmental factors play in health outcomes. similar to the findings of natarajan et al. (2023), poorly planned or maintained infrastructure such as a lack of ramps, uneven sidewalks or limited public transportation can worsen mobility challenges. these findings should be considered when developing interventions and policies aimed at addressing the diverse barriers individuals face in different environments. the articles included in the review had a notable focus on densely populated areas and accessible tertiary health facilities. this suggests potential disparities in the healthcare research infrastructure, highlighting limited resources particularly at the primary healthcare level in kenya, which supports maclellan, turnbull and pope (2022), in a study on infrastructural research barriers. the lack of health research infrastructure including technological resources, human resources and funding mechanisms may negatively impact the conduct of high-quality research in primary healthcare settings (zakaria, grant & luff 2021). the deficiency in our study causes skewed representation of health data, limiting the applicability of research findings to the entire populations. it also leads to a disproportionate reliance on external sources for health data and interventions. this dependency can contribute to a lack of autonomy in addressing local health challenges and tailoring interventions to the unique socio-cultural contexts. however, the results have the potential to inform policy decisions, funding allocation strategies and capacity-building initiatives aimed at reducing disparities in health research infrastructure. our main finding aligns with charumbira et al. (2022a), where mobility, pain and mental health-related problems were identified as the most prevalent functioning problems. likewise, matter and eide (2018) reported walking difficulties and stair climbing problems in botswana and swaziland, respectively. identifying specific functioning problems in kenya may enable policymakers and healthcare providers to prioritise resources for interventions. this may lead to funding allocation and programmes improving access to mobility aids, pain management and mental health support. mobility issues and pain can hinder individuals’ work and daily activities, impacting productivity. addressing these problems could enhance economic participation and yield broader socioeconomic benefits. recognising mental health prevalence highlights the need to support social support systems, expand services, and provide healthcare professional training. our findings can also drive research and innovation for tailored interventions as well as policy development aimed at enhancing health outcomes and quality of life for kenyan citizens, integrating strategies into broader healthcare initiatives. this review identified 19 distinct functioning problems requiring rehabilitation. however, rehabilitation faces challenges in providing services across the various health system levels and in sectors beyond healthcare. neill et al. (2023), in a study on prioritising rehabilitation in lmics, found that rehabilitation is affected by fragmented governance across various sectors and stakeholders, as well as weak health systems. this negatively affects patient engagement, leading to suboptimal rehabilitation care and lower levels of care satisfaction (maphumulo & bhengu 2019). literature has highlighted the need for a novel approach to effectively manage functioning problems associated with health conditions (coulter & oldham 2016). ekman and swedberg (2022) propose a person-oriented care model to comprehensively address the diverse range of functioning problems. the majority of functioning problems identified in the present review mapped within the icf framework demonstrated interconnectedness and spiralling, where a single condition can manifest various functioning problems spanning across different domains and categories. as a result, targeting a particular functional problem has the capacity to concurrently mitigate the corresponding impact on other affected domains. for example, addressing reduced range of motion in the lower limbs can enhance walking ability, which may in turn alleviate challenges related to domestic life. this interconnectedness reflects the holistic nature of rehabilitation interventions, as discussed by jasemi et al. (2017). therefore, challenges or improvements in one aspect of functioning may set off a chain reaction, either exacerbating or alleviating difficulties in other domains. this aligns with the icf’s biopsychosocial model, where body functions, activities and participation are dynamically interconnected. as suggested by cadel et al. (2022), adopting a comprehensive approach to rehabilitation, addressing both specific impairments and broader life challenges, can significantly enhance overall function and quality of life. stucki et al. (2018) suggests that rehabilitation is becoming a key health strategy in the 21st century, although it may fall short if conducted in isolation. the effectiveness of rehabilitation is enhanced when it is part of a multidisciplinary approach that addresses the complex, multifaceted nature of functioning problems related to different health conditions (bøgdal et al. 2021; builova & marchenkova 2020; who 2021). isolated rehabilitation may lack the broader perspective needed to address underlying issues contributing to functioning problems, such as psychosocial factors, environmental considerations and individualised patient needs. the limited number of identified problems in our study can serve as a snapshot, providing valuable insights to raise awareness among rehabilitation professionals regarding the contextual presentation of functioning problems. this can assist clinicians in the recognition, assessment and development of targeted, patient-centred rehabilitation plan as suggested by gonzalez–suarez et al. (2015). understanding functioning provides a clearer insight into the burden associated with a health condition and its impact on a person’s life roles (seger, grotkamp & cibis 2017). this enhanced awareness contributes to a more comprehensive and informed approach to rehabilitation strategies, ultimately improving the overall effectiveness of patient care. informed patients are empowered to participate in healthcare decisions, aligning treatments with their preferences, which leads to better engagement in rehabilitation and improved quality of life (coulter & oldham 2016; van der laag et al. 2021). integrating rehabilitation into a comprehensive healthcare framework improves functional outcomes by addressing the multifaceted nature of patient conditions (who 2021). evidence shows that rehabilitation plays a critical role not only in restoring function but also in prevention, curative and palliative care (conradie et al. 2022; janerka, leslie & gill 2023; lee & lee 2021; rauch et al. 2019). in kenya, the integration of rehabilitation into primary healthcare could better address the underlying functioning problems in rural populations, where 64% of the population resides, yet access to rehabilitative services is extremely limited (oyugi 2019). with 3.5% of the population living with a disability (owino 2020), the scope for rehabilitation services is vast, especially given the underreporting of these figures (united nations 2019). this evidence suggests that by embedding rehabilitation services into a broader system, kenya can improve access and outcomes for those in resource-limited settings. the ministry of health in kenya has committed to improving rehabilitation services, but barriers remain, particularly in rural and primary healthcare settings (owino 2020; oyugi 2019). to enhance service quality and access, the development of rehabilitation professionals is crucial. evidence supports that the effectiveness of rehabilitation depends on the competency of healthcare personnel, particularly in terms of tailored knowledge, skills and attitudes suited to resource-constrained settings (heine, derman & hanekom 2022; who 2021). the introduction of bachelor of science programmes in rehabilitation fields is vital for building this workforce, ensuring professionals are equipped to meet kenya’s rehabilitation needs, especially in primary healthcare (ministry of health 2023). investments in education and skill development will help address the country’s rehabilitation gap and improve overall healthcare outcomes. strengths the research leveraged the icf as a standardised framework. it provides a structured and internationally recognised approach for describing functioning problems among adults in low-resource settings and enhances the reliability and comparability of the findings. the use of the web-based application rehab4all facilitated a clear process for extracting data. it streamlined data collection, enhanced efficiency and allowed updates. limitations there is a scarcity of articles reporting on functioning problems within the gbd in kenya. the available literature may not sufficiently cover the topic, impacting the depth of understanding of functioning problems in the context of the gbd. because of the scarcity of articles, the generalisability and comprehensiveness of the research findings regarding functioning problems in the kenyan population may be constrained. this limitation highlights a potential gap in knowledge and raises questions about the extent to which the findings can be applied broadly. need for further research the limitation identified in the scoping review emphasised the necessity for further research to address the lack of information. while acknowledging this limitation is important, it also serves as a call to action, indicating the importance of future studies to fill the gaps and provide a more understanding of the impact of functioning problems on the overall burden of disease in kenya. conclusion this scoping review identifies prevalent functioning problems associated with health conditions leading to disability, mainly observed in primary healthcare and community settings in kenya. when mapped to the icf, the most prevalent functioning problems were related to mobility, sensory and pain, and mental health. this highlights the necessity for innovative strategies to improve rehabilitation services, especially in areas lacking professionals. county-level health departments can be reformed to provide health promotion and prevention services addressing these problems. early detection through routine screening in primary healthcare and community settings is crucial, using accessible tools. disseminating knowledge and implementing self-management strategies within communities, utilising the existing healthcare workers, can be effective. these adjustments can improve population health outcomes and support universal health coverage goals. acknowledgements the authors would like to thank alvina matthee of the faculty of medicine and health sciences library, stellenbosch university and george miller of moi university for guidance in literature search strategy. they would also like to thank denric blaauw for the development of the rehab4all application. competing interests the authors reported that they received funding from department of health and rehabilitative science at stellenbosch university, which may be affected by the research reported in the enclosed publication. the authors have disclosed those interests fully and have implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions n.w.k. was the major contributor in drafting, writing, review and editing the article as part of her post-doctoral fellowship. q.a.l. was involved in conceptualisation, software, validation, funding and acquisition. q.a.l. and m.y.c. performed methodology, supervision and visualisation. n.w.k. and q.a.l. were responsible for formal analysis, investigation, data curation, visualisation. all authors have read and agreed to the published version of the article. funding information this research was funded by the department of health and rehabilitative science at stellenbosch university. data availability the data underlying this article will be available from the corresponding author, n.w.k., upon request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references arksey, h. & o’malley, l., 2005, ‘scoping studies: towards a methodological 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practice. abstract introduction methods results discussion limitations conclusion acknowledgements references about the author(s) terry j. ellapen department of sport and dental therapy, tshwane university of technology, tshwane, south africa yvonne paul department of sport, rehabilitation and dental therapy, health science, tshwane university of technology, tshwane, south africa henriëtte v. hammill school of human movement science, faculty of health science, north-west university, potchefstroom, south africa mariëtte swanepoel school of human movement science, faculty of health science, north-west university, potchefstroom, south africa citation ellapen, t.j., paul, y., hammill, h.v. & swanepoel, m., 2021, ‘altered cervical posture kinematics imposed by heavy school backpack loading: a literature synopsis (2009–2019)’, african journal of disability 10(0), a687. https://doi.org/10.4102/ajod.v10i0.687 original research altered cervical posture kinematics imposed by heavy school backpack loading: a literature synopsis (2009–2019) terry j. ellapen, yvonne paul, henriëtte v. hammill, mariëtte swanepoel received: 12 nov. 2019; accepted: 05 oct. 2020; published: 22 jan. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: habitual school backpack carriage causes neuro-musculoskeletal vertebral, shoulder and hand pain; deviated posture compromised cardiopulmonary function and proprioception. objective: present a novel literature summary of the influence of backpack carriage associated with deviated cervical posture and compromised pulmonary function. method: an electronic literature appraisal adopting the preferred reporting items for systematic reviews, using google scholar, science direct, embase, amed, ovid, pubmed and sabinet search engines, was instituted during 2009–2019. key search words: schoolbag, backpack, carriage, cervical posture and children. the quality of the studies was assessed using the downs and black appraisal scale. results: 583 records were initially identified which was reduced to 14 experimental and observational studies. a total of 1061 participants were included across the 14 studies, with an average age of 11.5 ± 1.3 years, body mass of 37.8 ± 6.6 kilograms (kg), height of 1.41 ± 0.05 meters (m), backpack mass of 5.2 ± 0.9 kg and percentage backpack mass to child’s body mass of 13.75%. the studies mean rating according to the downs and black appraisal scale was 76.3%. the average craniovertebral angle (cva) was 53.9° ± 14.6° whilst standing without carrying a backpack was reduced to 50.4° ± 16.4° when loaded (p < 0.05). backpack loads carried varied from 5% – 30% of the participant’s body mass that produced a mean cva decline of 3.5°. conclusion: backpack carriage alters cervical posture, resulting in smaller cva and compromised pulmonary function. there is no consensus of the precise backpack mass that initiates postural changes. girls’ posture begin changes when carrying lighter backpacks as compared to boys of the same age strata. keywords: cervical posture; compromised cardiopulmonary function; neuro-musculoskeletal; vertebral; proprioception; school backpack carriage. introduction numerous investigations have been conducted in order to determine the effect of carrying school backpacks on children’s health and well-being (dockrell, blake & simms 2016; milanese & grimmer-somers 2010; sharan et al. 2015). research surveillance found that carrying a school backpack produces deviant posture, neuro-musculoskeletal and vertebral disorders (cervical and lumbar), shoulder and hand pain (pant, kaur & sidhu 2016; walikca-cuprys et al. 2015), diminished cardiopulmonary function due to the compressive pressure of the schoolbag onto the thoracic region (alaa & baiee 2016; chow et al. 2009; veirria & ribeiro 2014) and decreased proprioception (mosaad & abdel-aziem 2018) which subsequently increases the risk of falls and injuries. subsequent research attempted to determine safe school backpack loads, defining weights at which negligible pain, discomfort and cervical and postural deviations were produced (arghavani et al. 2014; dockrell, simms & blake 2015; khallaf et al. 2016). at present there is no consensus regarding what is a safe backpack load that produces trivial side effects in children between the ages of 10–14 years. safe carriage loading guidelines vary from 5% to 20% relative to a child’s body mass (dockrell et al. 2016; hammill, ellapen & swanepoel 2017). the american occupational therapy association recommends a load of 15% relative to the child’s body mass, whilst the american academy of pediatrics supports voll and klimt’s (1977) 10% load guideline prescription (dockrell et al. 2016). another factor influencing schoolbag carriage load pertains to childhood obesity and the body mass index (bmi) of the child. overweight and obese children have larger body masses than lean children, but their muscle strength and endurance may be similar and/or even less developed (thivel et al. 2016). in these cases, the adoption of loading guidelines, expressed as percentages (varying from 5% to 20%), may prove to be problematic as the overweight child may not have the adequate muscle strength and endurance required to carry such a load, as compared to his or her age-matched peers (adeyemi, rohani & rani 2015; de paula et al. 2012). this burden is further amplified when one takes the high prevalence of physical inactivity amongst children into account, resulting in poor musculoskeletal strength and endurance, and limited cardiopulmonary conditioning that cannot manage the load imposed by hefty school backpacks (adeyemi et al. 2015; de paula et al. 2012). hammill et al. (2017) recommended that the kinematic load carrying posture of children compared to their unloaded posture should be reviewed in order to provide biomechanical insights into determining safe loading guidelines; the present commentary is motivated by this recommendation (hammill et al. 2017). it is a novel review of the literature pertaining to the impact of school backpack carriage on the cervical posture of children, reviewing studies published during the period 2009–2019, with specific regards to sagittal plane kinematic changes. whilst the authors are aware that schoolbag backpack carriage influences the child’s entire vertebral column, the focus of this article is nevertheless on cervical and thoracic vertebral deviation, when viewed in the sagittal plane. hammill et al. (2017) have already described the lower lumbar vertebrae and pelvic re-alignment induced by carrying school books, and there is therefore no need to revisit these studies. when the child carries a backpack, the weight of the load alters the incumbent’s posture in the sagittal, frontal and transverse planes because of the closed-kinetic chain interaction of all the planes (mansfield & neumann 2009). however, the major observable postural change is in the sagittal plane. backpack-induced, frontal plane posture changes primarily occur when the incumbent carries the backpack on a single shoulder (unilateral carrying method) (hammill et al. 2017). walking is a cascade of biomechanical changes in all three planes, collectively resulting in anterior or posterior translation of the human body in the sagittal plane. backpack-induced, static, sagittal plane postural changes can be considered as the precursory phase of the subsequent kinematic and kinetic anterior translation changes as a child walks. therefore, this article will review backpack-induced sagittal plane postural changes amongst children, which can be used in subsequent gait kinematic research. although a number of tangentially related systematic reviews were completed during the aforementioned period, none of them reviewed this particular theme. dockrell, simms and blake (2013) reviewed the association between prescribed backpack load guidelines and the onset of musculoskeletal pain during the period from 1984 to 2009, whilst abdullah, mcdonald and jaberzadeh (2012) reviewed the literature related to the impact of schoolbag carriage and load placement on postural deviation amongst scholars from the 1900s until 2012. abdullah et al. (2012) did not however review the specific changes to cervical and lumbar vertebral kinematics because of backpack loading. hammill et al. (2017) reviewed the common anatomical sites of musculoskeletal pain induced by schoolbag carriage, methods of carrying school backpacks, the change in pelvic tilt angle and the consensus regarding the accepted safe backpack mass that can be carried by school children. however, hammill et al. (2017) did not describe the altered cervical postural kinematics induced by carrying heavy school backpacks. there is a paucity of literature summarising the kinematic effects of school backpack loading on cervical posture. therefore, the authors pose the central overarching question as to whether cervical postures change when children aged 10–14 years old carry school backpacks as compared to when they do not carry backpacks. this central question was broken down into three more specific questions: what was the cascade of kinematic events, which resulted in cervical postural deviations when school children carry backpacks? what is the specific percent mass of backpack load that initiates changes in craniovertebral angle (cva)? what is the strength of the clinical evidence supporting the ill effects of backpack loads which produce altered cervical posture amongst children? this article presents a concise summary of the impact of heavy school backpack carriage on a child’s cervical posture by inter-relating biomechanical cascade of events occurring at the craniohorizontal angle (cha), craniovertebral angle (cva), shoulder sagittal angle (ssa) and anterior head alignment (aha), which has hitherto not been undertaken. the article also reviewed the kinematic association of the altered backpack load-induced cervical posture that changes thoracic alignment, and its influence on pulmonary function. furthermore, this is the only commentary that presents clinical evidence as per mill’s canons of epidemiology. methods protocol an electronic, narrative literature surveillance adopting the preferred reporting items for systematic reviews and meta-analyses (prisma) benchmarks was followed (moher et al. 2009). the definitions were guided by the primsa checklist for participants, interventions, comparisons, outcomes and study designs (picos) (miller 2001). the participants were the research articles pertaining to the change in cervical posture amongst 10–14-year-old school children that carried backpack; the intervention was not necessarily a therapeutic intervention but is interpreted as an exposure, namely, the change in cervical posture of 10–14-year-old school children who carry backpacks. the outcomes of interest included (1) a cascade of kinematic events resulted in cervical postural deviations when school children carried backpacks, (2) specific percent mass of backpack loads that initiate change in craniovertebral angles and (3) gender-specific variations with regard to differing backpack mass loads relative to girls’ and boys’ body mass that can be carried without producing deviations in cervical posture. participants, interventions, comparisons, outcomes and study search strategy protocol patient/problem: cervical postural changes amongst children aged 10–14 years old, who carry school backpacks. intervention: change in cva when carrying school backpacks. comparison: the change in children’s cva when carrying backpacks as compared to when not carrying backpacks. outcome: altered cervical posture manifested through reduced cva, which is associated with cervical postural syndrome and thoracic kyphosis. research question: does cervical posture change when children aged 10–14 years old carry school backpacks as compared to when they do not carry backpacks. the study design of this review involved pre-test and post-test assessments information sources an electronic exploration of peer-reviewed literature using the google scholar, science direct, pubmed, embase, amed, cinahl, ovid and sabinet search engines was completed for papers published during the period 2009–2019 (figure 1). figure 1: conceptualisation of the review process. study selection processes the primary keyword in the literature search included ‘schoolbag carriage’; then subsequent words such as ‘backpack’, ‘cervical posture’ and ‘children’ were added. the review and selection criterion for the documents was accomplished in three phases: title review, followed by abstract review and full text review. literature search was conducted from december 2018 until august 2019, and the records were screened by the authors (m.s., t.j.e. and h.v.h.). each of the authors completed the three phases, resulting in a list of studies to be synthesised into the commentary. divergent views amongst the authors whether to include or exclude a study was resolved by holding a joint review and it was put to vote whether the study should be included, based on the application of the inclusion and exclusion criteria (majority vote dictated decision). inclusion criteria participants were records pertaining to the impact of schoolbag backpack carriage on the student’s cervical posture. participants of the studies had to be within the age strata of 10–14 years and included both genders. the types of studies that were included in this evaluation were empirical articles and randomised control studies. relevant themes that emerged included altered cha, cva and ssa because of schoolbag carriage and rehabilitative exercises were formulated to resolve the altered cervical posture of children carrying heavy schoolbags. exclusion criteria records and articles preceding to the period prior to 2009, relating to the altered cervical posture of adults carrying backpacks, and those of children older than 15 years were not included in the study. similarly, backpack studies relating to non-cervical posture, electromyography studies (emg), non-english papers, meta-analyses, systematic reviews and case reports were excluded, as the authors’ primary aim was to synthesise empirical articles pertaining to the aforementioned topic. quality of assessment (risk biasness) the value of each record was assessed by adopting a modified downs and black appraisal scale, which examines the merit of randomised controlled trials and non-randomised papers (downs & black 1998) (table 1). a modified downs and black appraisal scale was applied as not all of the questions on the original checklist were related to this study, as underlined by gorber et al. (2007). these practices were employed in order to avoid any researcher bias. the modified checklist comprises 13 questions, with a maximum of 13 points. a score of either 0 (no) or 1 (yes) was given for each answer. the questions adopted from the modified downs and black appraisal scale are 1, 2, 3, 4, 6, 10, 11, 12, 13, 14, 18, 20 and 27 (table 1). these questions are classified into four sections, which evaluate the whole merit of each record (table 1). the classification considered the reporting prowess (n = 6 questions), external validity (n = 3 questions), internal validity (n = 3 questions) and power of significance (n = 1 question) of each publication (downs & blacks 1998). the reporting sub-section reviews the studies’ aims, sample characteristics and the outcome measures. the external validity reviews the representativeness of findings, and whether they can be generalised from the population the subjects were recruited from (downs & black 1998). the internal validity reviews whether subjects were blind to interventions used, and whether the statistical analyses were appropriate. the power of significance reviews whether the statistical tests used were adequate to determine clinically important findings (downs & black 1998). in the event of any disagreements amongst the authors (m.s., t.j.e. and h.v.h.) regarding the score of the selected records or articles, the authors were able to query the scoring of each record and would then discuss the scores adopting the jointly accepted score. the cumulative score of each record was subsequently converted into a percentage, thereby appraising the overall merit of the individual records (downs & black 1998). the overall merits of the records were further classified into the following scale: less than 50% (weak), 50% – 69% (fair), 70% – 79% (good) and less than 80% (very good) (li, khoo & adnan 2017). the mean rating of the selected papers was 76.3% (good). table 1: the questions in the modified downs and black appraisal scale. data extraction the following data were extracted from 14 articles: sample: reported on the size, gender, age, height, body mass of participants and mass of backpack (expressed as a percent of the student’s relative body mass). research design: studies were classified as randomised control trial, experimental group with concurrent control, and experimental group without control group. aim: described the aims of the individual studies. protocols: reported on how sagittal plane posture was analysed, how measurements of cva, and in some studies cha and ssa, were carried out. intervention: the carrying of school backpack. findings: reported on the change in sagittal plane posture when children carried school backpacks (loaded phase) versus not loaded phase. one search the authors completed a search in the sabinet database under the categorisation medicine and health. the preliminary search word used was ‘schoolbag’ that yielded 40 records. then the subsequent word ‘schoolbag carriage’ was entered that yielded nine records. these records were then reviewed for relevance with respect to title and year of publication and it yielded two records. a similar search strategy was completed with regard to the other search engines. synthesis of results descriptive statistical analyses including mean and percentages were performed. an inferential statistical paired t-test that compared the change in cva during the unloaded versus loaded phases of the 14 studies was also completed (with the probability factor set at 0.05). the descriptive analyses involved calculating the sum of the participants in the 14 studies, then calculating their mean age, body mass, height and backpack mass. the backpack mass was then expressed as a percentage relative to the average body mass of the participants. the mean cva of the participants when loaded (carrying traditional type backpacks) and unloaded (not carrying backpacks) was calculated and compared to determine changes in sagittal plane posture. the studies that employed an exercise intervention to combat the effect of heavy backpack post-test cva results were omitted from the above calculation of the mean cva and its subsequent comparison. definitions of biomechanical terminology in order to completely comprehend the cascade of sagittal plane kinematics (deviated cervical posture) when carrying school backpacks, a number of terms will need to be defined. the cha is created by drawing a horizontal line bisecting the tragus of ear and another line drawn from the tragus to the external canthus of the eye (hande et al. 2012). hande et al. (2012) further recommended that this is an approximation of the head on neck angle, which is established in relation to the upper cervical spine. the cva is created at the juncture between the horizontal line drawn through the spinous process of cervical vertebra seven (c7) and a subsequent line drawn to the tragus of the ear. it is an approximation of neck on cervical vertebrae and head alignment in relation to the thoracic vertebrae. a small cva is suggestive of a forward head posture (hande et al. 2012). the ssa is the angle created at the juncture between the horizontal line drawn through c7 and a corresponding line drawn between the mid-point of the greater tuberosity of the humerus and posterior aspect of the acromion (hande et al. 2012). hande et al. (2012) reported that this angle identifies a forward shoulder position with a smaller angle, suggesting that the shoulder is positioned further anterior than c7 (rounded shoulder). ethical consideration this article followed all ethical standards for research without direct contact with human or animal subjects. results study characteristics the 14 studies comprised 13 experimental, observational and cross-sectional studies, without concurrent controls (abrahams et al. 2011; goswami, sarkar & mishra 2017; hande et al. 2012; hundekari et al. 2013; khallaf et al. 2016; kistner et al. 2013; leman, idris & murdana 2013; malik, vinay & pandey 2017; mo et al. 2013; mosaad & abdel-aziem 2018; pahwa 2013; ramprasad, alias & raghuveer 2009; vaghela et al. 2019) and one experimental study with a concurrent control (misra, nigm & alagesan 2012). whilst all studies (n = 14) reviewed the effects of backpack loading on cervical posture, four included interventions (leman et al. 2013; misra et al. 2012; mo et al. 2013; mosaad & abdel-aziem 2018) (table 2). one study reviewed the effects of exercise rehabilitation in order to resolve deviated cervical posture caused by backpack carriage (misra et al. 2012), whilst another study compared traditional backpack loading with modified bag carriage (leman et al. 2013). mosaad and abdel-aziem (2018) compared the impact of carrying a traditional style bag with that of a double-sided bag on children’s posture and proprioception. mo et al. (2013) and goswami et al. (2017) reported on the association between altered cervical posture, gait analyses and backpack loading. of the 14 studies considered, eight studies were conducted in india (57.1%), two studies in egypt (14.2%) and one in each of the following: south africa (7.1%), united states of america (7.1%), canada (7.1%) and indonesia (7.1%). table 2: results of individual studies (n = 14) pertaining to the influence of school backpack carriage on children’s cervical posture (2009–2019). table 2 (continues...): results of individual studies (n = 14) pertaining to the influence of school backpack carriage on children’s cervical posture (2009–2019). risk of bias assessment the measures of the risk of bias assessment are described in table 3. the reporting sub-section mean was 5.07, whilst the external validity sub-section mean was 1.85. the mean of the sub-sections of internal validity and power of significance was 2.0 and 1.0, respectively. the overall mean merit rating of the 14 records as a percentage was 76.3%, which was classified as good according to the li et al. (2017) scale. table 3: results of the evaluation of records pertaining to schoolbag carriage cervical posture amongst students during the period of 2009–2019 (n = 14). data synthesis a total of 1061 participants were recorded across the 14 studies, with an average age of 11.5 years (± 1.3), which yielded an average of 13.75% backpack mass relative to the child’s body mass. the average cva was 53.9° ± 14.6°, whilst standing without carrying a backpack (unloaded phase) was reduced to 50.4° ± 16.4° when loaded (p < 0.05) (table 4). backpack loads carried by subjects varied from 5% to 30% of the participant’s average body mass and produced a mean cva decline of 3.5°. the participants’ average body mass was 37.8 kilograms (kg) ± 6.6 kg, height was 1.41 metres (m) ± 0.05 m and backpack mass was 5.2 kg ± 0.9 kg. table 4: comparative analyses of craniovertebral angle during unloaded versus loaded phases of the 14 studies. research themes the following themes evolved from the literature review: the cascade of kinematic events that result in cervical postural deviation, manifested through diminished cva. the need to identify the specific percent mass of backpack load that initiates changes in cva. the strength of the clinical evidence supporting the ill effects of backpack loads which produce altered cervical posture amongst children. discussion the similarity of significant changes observed in the cervical curvature when viewed in the sagittal plane was clearly established because of the uniform adoption of fundamental test to measure the cva change. this helped to improve the validity of the findings. the primary biomechanical objective was to determine through the measurement of cva whether the carrying school backpacks alter sagittal plane cervical posture. empirical literature subsequently revealed that altered cva is accompanied with altered cha and ssa. however, a common biomechanical explanation of how these altered cervical angles combined to produce a deviated cervical posture is conspicuously missing in the literature. individual studies have identified changes in the aforementioned sagittal plane angles, but none of them explain the phenomenon holistically. the current discussion will concentrate on the following three themes: the cascade of kinematic events that result in cervical postural deviations, specific percent mass of backpack loads that initiate change in cva, and the strength of clinical evidence supporting the ill effects of backpack loads, resulting in altered cervical posture amongst children. the cascade of kinematic events that lead to cervical postural deviations children’s sagittal plane posture was altered when they carried backpacks weighing between 5% – 20% of their relative body mass (hande et al. 2012; khallaf et al. 2016; pahwa 2013; vaghela et al. 2019). the deviation in posture was indicated by the change in cva, cha, and ssa. the cva and ssa decreased progressively as backpack loads increased, whilst the cha increased progressively (hundekari et al. 2013). the cva decreased in order to maintain balance within the anterior-posterior vertebral curves. the normal anterior-posture vertebral curves include marginal cervical lordosis, thoracic kyphosis and lumbar lordosis, which are responsible for aiding the vertebral column in supporting an upright posture (mansfield & neumann 2014). when the child carries a backpack load which is beyond the muscular strength of the erector spinae, a forward lean away from the medial-lateral axis is adopted (kistner et al. 2013), resulting in the forward movement of their centre of gravity (anteroposterior index) (mosaad & abdel-aziem 2018), thereby increasing the risk of falling forward. in an attempt to avoid falling and simultaneously securing the backpack, the child compensates by hyper-extending their lumbar vertebrae (excessive lordosis), then hyper-flexing their thoracic vertebrae (excessive kyphosis) and anteriorly protruding their cervical vertebrae (diminished cva, resulting in cervical postural syndrome). when the child’s cva decreases, the child’s cha increases so as to maintain the head in an upright position, producing altered kinetic chain affects which ripple down the lower vertebrae. this kinematic vertebral change decreases cva and ssa, but simultaneously increases cha (hande et al. 2012; hundekari et al. 2013). the spontaneous re-alignment of vertebrae in order to maintain balance and an upright standing posture is known as serial distortion of the kinetic chain (prentice 2011). habitual carrying of heavy backpacks produces a kypholordotic posture with cervical postural syndrome (decreased cva and ssa, coupled with increased cha). furthermore, the posterior kyphosis produces an anterior sunken chest (pes cavus) that may impact the child’s ventilation. clinical literature has confirmed that carrying hefty school backpacks reduces the subject’s lung volume (alaa & baiee 2016; ramadan & ali-shayea 2013; veirria & ribiero 2014). the sunken chest produces a decrease in the intra-rib spacing, bringing the superior ribs closer to the inferior ribs (hammill et al. 2017). this action asymmetrically strengthens the internal intercostal muscles (responsible for expiration), whilst simultaneously elongating the external intercostal muscles (responsible for inspiration) (mansfield & neumann 2009). the asymmetrical alteration of the resting length tension relationship of these force-couple muscles produces a negative impact on the child’s inspiration, producing chronic restrictive pulmonary disorder, thereby diminishing their forced vital capacity and inspiratory lung volumes (mansfield & neumann 2009; mcardle, katch & katch 2015). however, misra et al. (2012) reported that specific muscle strengthening and endurance conditioning help to resolve habitual cervical postural syndrome amongst children carrying heavy backpacks. similarly, prentice (2011) advocated that therapeutic resistance strengthening of the thoracic erector spinae muscles can reduce the presence of kyphosis, whilst simultaneously stretching the anterior chest muscles (pectoralis major and minor, serratus anterior and the internal intercostals). the impact of the improved muscle strength, endurance and posture garnered from the exercise therapy in association with its influence on the child’s pulmonary functioning has however not being measured. it is recommended that this gap in the literature should be measured with specific investigations. specific percent mass of backpack loads that initiate change in craniovertebral angles pahwa (2013), khallaf et al. (2016) and goswami et al. (2017) noted significantly decreased cva once backpack loads exceeded 9%, 10% and 12% of the boys’ relative body mass, respectively. the mean age of the cohort in these studies was 10.7–14.1 years, referring to a cervical postural, change-specific age strata of 10–14 years. these findings suggest that a critical safe backpack load might be set at 8% relative to boys’ body mass for boys aged 10–14 years (if one adopts the lower percent load relative to the child’s body mass). the critical limitations of these studies were the small sample size: pahwa (2013) (n = 10 boys), khallaf et al. (2016) (n = 50 boys) and goswami et al. (2017) (n = 6 boys). a larger sample is needed in order to validate their findings. the empirical evidence indicates that cva changes occur when a child carries a backpack, but they differ in opinions as to what percent mass of the backpack load produces a significant cva change. chansirinukor et al. (2001) reported that backpack loads from 15% produce significant cva changes, whilst pahwa (2013) reported that loads exceeding 8% produce altered cva. pahwa (2013) concurs with ramprasad et al.’s (2009) findings. these findings are conflicting in their precise percentage load value. therefore, the authors recommend that further empirical investigations should be conducted to determine the precise percentage of backpack load that produces a significantly altered cva, cha and ssa, which are also associated with neuro-musculoskeletal discomfort and pain. gender variations were also identified. khallaf et al. (2016) reported that girls’ cva started to change with loads of 5% relative to their body mass. they suggest that girls’ cervical posture begins to change earlier in order to accommodate carrying heavy backpacks well before the prescribed guidelines adopted by the american occupational therapy association (15%) and the american academy of paediatrics (10%). khallaf et al.’s (2016) findings concur with hammill et al.’s (2017) recommendation that boys and girls should have different safe mass loads per age strata in so far as their muscle strength and endurance differ. boys and girls during their anatomical and physiological development possess different muscle strength and endurance capacities, which will impact their ability to carry different relative, percent body mass backpack loads, as well as being able to maintain anatomically correct and neuro-musculoskeletal discomfort-free, and/or pain-free posture. males are generally stronger than females within their age-specific strata (hammill et al. 2017; khallaf et al. 2016) that may allow them to carry relatively greater/heavier backpack loads in relation to their body mass and adopting pain-free postures. this aforementioned evidence warrants the international paediatric health associations to prescribe independent gender-specific safe backpack mass loads for boys and girls. strength of evidence supporting the ill effects of backpack loads producing altered cervical posture amongst children it is a common practice to adopt mill’s canons (dishman, heath & lee 2013) to determine the vigour of the evidence supporting casual inferences. as such, the authors embraced mill’s canons in order to establish the strength of evidence supporting the causal inference that carrying heavy backpacks produces cervical posture deviation amongst children: temporal sequence refers to the order of exposure of the intervention, which must precede the change of the diseased condition (deviated cervical postural) within a sufficient time frame to make a plausible conclusion. a total of 11 studies reported a change in children’s cervical posture once backpacks were carried (refer to table 4). strength of association refers to the clinical significance between the disease (deviated cervical posture) and the intervention (carrying backpacks). eleven studies indicated a strong association between deviated cervical postures when carrying backpacks (table 4), where the intervention is regarded as the carrying of the school backpack and posture is regarded as the dependant variable. consistency of results refers to the consistent observation of the association between the consequence of the intervention (carrying backpacks) and the disease (deviated cervical posture). the 11 empirical studies reported changes in children’s cervical posture when they carried backpacks (table 4). the aforementioned studies indicated a decrease in cva and ssa and a concurrent increase in cha. biological plausibility refers to the clinical explanation of the observed outcome of the intervention regarding diseases. the 11 studies also reported altered cva, cha, and ssa, indicating altered cervical posture because of carrying backpacks (table 4). studies have confirmed that habitual backpack loading compromises pulmonary functioning. dose response refers to the volume of intervention required to produce a specific outcome on the disease. evidence indicates that a backpack mass greater than 8% for boys and 4% for girls within the 10–14 years age group produces altered cervical posture. limitations this review was not registered with the the international prospective register of systematic reviews (prospero) website. the review has identified that heavy schoolbag backpack loads alter the sagittal plane cervical posture, reflected by a diminished cva. however, this altered cervical posture also impacts the ssa and cha. there were only four studies that measured ssa and cha, which reflected altered cervical posture. more investigations need to be conducted to document the changes in these associated kinematic angles. although literature has identified gender variations relating to the extent of percent backpack mass loads that boys and girls can carry, more investigations are needed to guide international paediatric health associations to draft specific independent gender-specific safe backpack mass loads for boys and girls. conclusion children carrying backpacks experience a change in their cervical posture, which might alter their normal day-to-day living and wellness. the child’s cva and ssa diminish, whilst their cha increases, thus altering the anterior-posterior curvature of the vertebrae, producing a kypholordotic posture and cervical postural syndrome. the empirical evidence indicates that cva, cha and ssa changes occur when a child carries a backpack but they differ in opinions as to what relative percent mass of the backpack loads produce significant cva, cha and ssa changes. the relatively precise percent backpack load that produces altered cva, cha and ssa associated with neuro-musculoskeletal discomfort and/or pain needs to be identified. it is well established that boys are usually stronger than girls within their age-specific strata, which enables them to carry relatively greater backpack loads in relation to their body mass. the altered cervical posture also poses a threat to the child ventilation. parents, educators and healthcare professionals should consider the aforementioned literature that limits the percent mass load when children carry backpacks. this aforementioned evidence warrants the international paediatric health associations to prescribe independent gender-specific safe backpack mass loads for boys and girls. acknowledgements competing interests the authors have declared that no competing interest exists. authors’ contributions all co-authors contributed to the literature surveillance and drafting of the article. funding information this research 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and primary care 8, 1076–1081. https://doi.org/10.4103/jfmpc.jfmpc_367_18 veirria, a.c. & ribeiro, f., 2014, ‘impact of backpack type on respiratory muscle strength and lung function in children’, ergonomics 58(6), 1005–1011. https://doi.org/10.1080/00140139.2014.997803 voll, h. & klimt, f., 1977, ‘strain in children caused by schoolbags’, offentliche gesundheitswesen 39, 369–378. walikca-cuprys, k., shalska-izdebska, r., rachwal, m. & truszcynska, a., 2015, ‘influence of weight of a school backpack on spinal curvature in the sagittal plane of seven year old children’, bio-medical research international 2015, 817913. https://doi.org/10.1155/2015/817913 abstract introduction research methodology findings and discussion: parental support and ‘forms of capital’ conclusion acknowledgements references about the author(s) princess t. duma department of human resource management, mangosuthu university of technology, umlazi, south africa lester b. shawa higher education studies, university of kwazulu-natal, durban, south africa citation duma, p.t. & shawa, l.b., 2019, ‘including parents in inclusive practice: supporting students with disabilities in higher education’, african journal of disability 8(0), a592. https://doi.org/10.4102/ajod.v8i0.592 original research including parents in inclusive practice: supporting students with disabilities in higher education princess t. duma, lester b. shawa received: 05 nov. 2018; accepted: 07 aug. 2019; published: 21 oct. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: while a number of research studies have endeavoured to understand students with disabilities’ experience in higher education and have recommended ways to effectively support student success, the role of parental support has been neglected. many studies have been hampered by a limited understanding of students with disabilities and have, in particular, underestimated students’ ‘access to economic, social and cultural forms of capital’ that caring parents provide. objectives: this article seeks to explore students with disabilities’ experiences of parental support in the south african higher education context. the research question guiding this article is: what forms of economic, social and cultural capital do parents and extended families provide to students with disabilities to enable them to succeed in higher education? method: in-depth semi-structured individual and focus group interviews were conducted with 17 students with disabilities at two universities of technology. the interview transcripts were thematically analysed with a view to understanding pierre bourdieu’s forms of capital that parents provided. results: the study found that while parents are not always able to provide material support, they offered rich and varied forms of social and cultural capital that enabled students with disabilities’ academic success. conclusion: given that parental support plays an important role in the success of students with disabilities, and this role changes as these students become more independent, this study recommends the need for universities to also pay more attention to involving parents in the education of the former. it is hoped that putting in place appropriate forms of parental involvement can create a conducive environment for universities to provide inclusive education holistically. keywords: family support; disability; south african universities of technology; inclusive education; forms of capital. introduction the transition from a basic schooling system to a tertiary institution often comes with mixed emotions for both students and parents. for students, it may mean independence as they emerge from the familiar home and school environment into the wider world of the higher education and experiencing the freedom of making one’s own decisions. according to lane (2017), all students both those with disability and those without, experience transitioning to higher education as stressful – new environments, new ways of learning and meeting new people is a rite of passage for millions of young people every year. (p. 18) however, it has been widely reported that many students are underprepared academically for higher education studies, and this is associated with the high attrition and failure rate in south african universities. the dhet (2019) report reveals that some students take about a decade to complete a qualification as ‘68.8% (graduate) after 6 years of study and 78.8% (graduate) after 10 years of study’ (p. 30). according to bannink, idro and van geert (2016), some students become overwhelmed by academic demands and a sense of personal autonomy when they are away from their parents and a familiar environment. pressure and confusion manifests itself among first-year students in particular when they need to acquaint themselves with the new environment, where they have to negotiate their social and academic spaces in an attempt to become productive members of the tertiary environment (bonnani 2015). in this setting, the role of parents is relegated to a secondary position as students are expected to take charge of their studies and non-academic activities and this precludes parents (bonanni 2015; coccarelli 2010). the institution enters into a contractual agreement with the student, regardless of whether the student understands it or not. some students (first year in particular) may not understand several important issues, such as the manner in which the higher education system functions, for example how to deregister formally or what a fee increase entails. these processes deviate from their school experiences where parents were typically consulted. moreover, universities’ operations and fees are sanctioned by the university council and not with parents (edelman 2013). many students with disabilities come from special schools where environments are conducive for their particular conditions and needs (bonanni 2015; kelepouris 2014; mcgregor et al. 2016). this is not the case at universities, as the extract from daily maverick (van der merve 2017) below reveals: [in special schools] you have your teachers, just a few in the class, receive individual attention, and then you get to university and there are hundreds of you and nobody cares about you. (p. 1) leaving supportive learning environments in special schools behind is fraught with challenges for both students with disabilities and their parents. these challenges, with a specific focus on the role of parental support, are the focus of this article. it was pertinent and timeous to explore students with disabilities’ experiences of parental support in higher education, as their experiences could inform policy and practice within universities. thus, the concern of the article is to explore the forms of economic, social and cultural capital that families provide which enable students with disabilities to succeed in their endeavours in a higher education setting. a brief overview of the literature on parental support for students with disabilities the role of parents in higher education has attracted interest globally, and this has become evident in a growing body of literature (see bethke 2011; chadwick 2015; edelman 2013; garret 2015; wong 2008). currently, there are contradictory understandings on the importance of parental support to students. for example, bethke (2011) and chadwick (2015) found that parents’ involvement in the basic education of their children can be inappropriate if it is sustained in a higher education setting, although there are cases in which such support can have positive outcomes on student performance. while there is a large body of literature on the role of parents in the lives of children with disabilities in basic education in south africa, there seems to be a dearth of literature on the significant influence of parental support on students with disabilities’ academic performance at university level (esau 2018). the literature suggests that there are appropriate and inappropriate forms of parental involvement (touchette 2013). wartman and savage (2008) describe parental support as: parents showing interest in the lives of their students in college, gaining more information about college, knowing when and how to appropriately provide encouragement and guidance to their student connecting with the institution, and potentially retaining that institutional connection beyond the college years, (p. 5) this description suggests that if parents are willing to work with universities, they could assist both their child and the university. it is natural for parents to care about the well-being of their children emotionally, financially, socially, academically and even spiritually (chen & ho 2012). religion and spirituality are considered as another form of identity, which link to the cultural capital (blanks & smith 2009), as care is provided regardless of disability status of the child. moreover, parents continue this support even when the child is enrolled at a tertiary institution (edelman 2013; garret 2015). in some instances, parents become ‘career counsellors’ who decide on the ‘perfect career’ and the appropriate institution for their children. many children resent this kind of support, but it is difficult to negate parental decisions as parents may have experiences of tertiary institutions (bethke 2011). parental support is thus associated with a dependency effect which has merits and demerits, like in any other relationship (edelman 2013; garret 2015). university structures tend to be intimidating and complex for new students; therefore, parental support in the selection of appropriate academic courses and registration processes are helpful (edelman 2013). it is a common practice in south african universities to invite parents to an orientation briefing at the beginning of the year, but after this encounter there is no or little communication with parents. moreover, the potential for a parent–university partnership has not yet been explored, probably because universities may wish to avoid parental interference at all costs (kiyama et al. 2015). one view is that the influence of ‘helicopter parents’ needs to be eradicated in the interest of the students. in this regard, vinson (2013) contends: helicopter parents hover from the prospective admissions stage to graduation and the job market beyond – contacting presidents of universities, deans, and professors, disputing their child’s grade; requesting an extension for their child; complaining their child does not receive as much praise as the parent would like; completing assignments for their child; requesting notification of grades their child received; and even attending job fairs and interviews with their child… (p. 423) ‘helicopter parents’ tend to influence every stage of their children’s progress socially, pedagogically, and legally which is perceived as unprofessional, unfavourable and disruptive (edelman 2013; garret 2015; haines 2017; segrin et al. 2012). cullaty (2011) suggests that the role of parents should remain peripheral, where they should be supportive without meddling or intervening in their children’s university lives as students need to develop into responsible adults who can make their own decisions. this is because extreme parental support may have adverse effects on the development of students, thereby prolonging their transition to adulthood (garret 2015). touchette (2013) and kelepouris (2014) argue that given the dynamics of global economics, the current generation of parents is more concerned with the future of their children compared with parents of the 20th century. therefore, in response to the demand by parents for stronger involvement and support, some universities have launched programmes such as family weekends, parent orientations, family events on move-in day, parent newsletters, parent handbooks, parent associations and fundraising as an attempt to enhance parental involvement (haines 2017). well-designed programmes assist in building partnership between universities and parents for the benefit of the students and the university while also demarking the boundaries of parental support. parental support parents of students with disabilities tend to be more involved with their children’s university life than most other parents as the challenges of the transition from high school to higher education are more demanding for these students (lane 2017; swart & greyling 2011). entry into higher education includes finding access to information (i.e. applying, finding an institution that best accommodates a specific disability and registering), finding suitable accommodation and choosing appropriate courses (tugli et al. 2013). adapting to a university’s demands depends on a number of factors such as character, social skills, nature of a disability, attitude, background and motivation (strydom & mentz 2010). various authors describe the barriers that students with disabilities encounter at university (kendall 2016; matshedisho 2010; mutanga 2017). lane (2017) broadly categorises these barriers as physical, attitudinal, social, cultural and political. central to the challenges these students face are attitudinal barriers (swart & greyling 2011). for example, there seems to be a general lack of willingness on the part of some lecturers to provide the necessary support required by students with disabilities. such an attitudinal position has an adverse impact on the academic performance of these students and, in some instances, even leads to failure or high dropout rate (riddell, wilson & tinklin 2002). it is thus important that students, institutions of higher learning, parents and service providers co-operate and honour their responsibility of providing appropriate support to students with disabilities (eckes & ochoa 2005; lang 2013). several recent studies have identified a number of specific areas in which parental support in the form of economic capital is of particular importance. for example, a recent study on the financial implications of disability identified three main areas in which students need financial support: (1) care and support for survival and safety, (2) accessibility of services and (3) participation in community activities (hanass-hancock et al. 2017). the latter study found that costs varied depending on the required care and support for the students as well as mandatory assistive devices such students need. students with disabilities in south africa are eligible as recipients of funds supplied by the national student financial aid scheme (nsfas). however, accessing such funds is fraught with challenges (bawa 2013; lourens 2015; ndlovu & walton 2016). parents and the families of students with disabilities may thus have to carry the financial burden to close the gaps when the funding scheme is lacking. a strong cultural form of capital is prevalent among africans that is associated with the spirit of ubuntu (taderera & hall 2017; walton 2018). ubuntu is when people are not only concerned with their own well-being but help to address the needs of others too. extended families are common in african culture, thus the absence of biological parents or their inability to adequately fund a child’s needs does not mean a student with disability will lack support, as family or siblings will often step in to ensure that the student is provided for (williams 2011). as a supplementary supportive system, grandparents often become the caregivers when parents are busy, absent or deceased, although this support is not without challenges. among the challenges that grandparents are likely to face are limited financial means, illiteracy and poor health (bulanda & jendrek 2016; sampson 2015). to date, the available literature reveals that there is a paucity of studies on parents’ and families’ support for students with disabilities in universities. the studies that could be traced tended to emphasise the role of the mother and generally find that ‘support provided by the biological fathers was minimal’ (taderera & hall 2017:8). studies also found that students whose parents had received a university education had an advantage over ‘first generation’ in terms of support (lorenzo & cramm 2012; williams 2011). the former group of students thus seems to be more likely to follow in their parents’ footsteps, as they understand the challenges that might be encountered in higher education settings. moreover, these parents will have a better knowledge of social services and nongovernmental organisations (ngos) that their children could access for additional support as they know that their families have aspirations for them (gatlin & wilson 2016). most students view academic success as a way of ‘paying back’ the investment made by parents. according to chen and ho (2012:317), it is a reciprocal relationship when ‘parents show their love by offering possible financial, material, and psychological support for learning, while the children return love by striving for academic excellence’. fuller et al. (2004) argue that both emotional and social forms of support were important for the academic success of students with disabilities. many such students have a strong family culture that relies on prayer to support their academic endeavours (kaye & raghavan 2002). the literature suggests that while disability and student counselling units provide useful resources, emotional or spiritual support is more valued when it is obtained from those with whom students have a personal connection and who understand their backgrounds and personalities (martinez 2015). students with disabilities, like most other students, create new images of themselves at university as they transform their self-images of vulnerability and dependency to that of capability independence and maturity. they soon view themselves as adults and soon-to-be professionals as they prepare themselves for the world of work (darling 2013). students tend to progress through various transitional stages towards emerging adulthood (garret 2015), and they thus want to be viewed as capable, responsible and independent persons who can make their own decisions, regardless of their disability status. as their independence increases, they will no longer wish to be as dependent on parental support as before, and many even reject some forms of support (kiyama et al. 2015). what parents should understand is that as their children reach new levels of independence and self-confidence, they should step back and engage in ‘less control and more communication’ (fernández-alonso et al. 2017:456). research methodology conceptual framework: pierre bourdieu’s forms of capital the conceptual framework for this study draws from bourdieu’s (1986) forms of capital as applied to higher education practices (crozier et al. 2008; yosso 2005) as well as to health and disability (mithen et al. 2015; pinxten & lievens 2014). bourdieu proposes three forms of capital: social, cultural and economic capital, and all three were deemed pertinent to university students with disabilities and the roles of their parents. portes (1998:7) argues that ‘economic capital is in people’s bank accounts, cultural capital is inside their heads, and social capital [is] in the structure of their relationships’. the term ‘capital’ is typically understood as the financial resources that are available for purchasing goods and services; however, for bourdieu there are additional symbolic forms of capital. for example, among the social groups that he studied, many valued strong neighbourhood ties, family bonds and social status as forms of capital or ‘wealth’. bourdieu terms these elements ‘social capital’, and argues that some societies value social capital above economic capital. cultural capital is another form of symbolic capital and describes the knowledge resources that an individual or group has accumulated. cultural capital may also extend to religious beliefs and spirituality, which are seen as a symbol of hope across all communities (blanks & smith 2009). such symbolic and abstract connections are likely to engender strong relationships, for instance between parents, children or between siblings. people attend university to acquire particular forms of cultural capital, such as a professional knowledge and skills that can, in turn, be exchanged for economic capital. bourdieu (1986:24) argues that the concept of capital is not necessarily limited to monetary value, but that ‘the forms of capital can be converted into other forms’, as in using cultural capital to acquire economic capital, using economic capital to buy books and thus gain cultural capital, or using social capital to progress in a workplace (and thus enhance economic capital). it is often more difficult for students with disabilities to acquire or ‘convert’ the social and cultural capital associated in higher education settings, and this can exacerbate the socio-economic disadvantage as they may find it difficult to acquire gainful employment (mithen et al. 2015). it is thus all the more important for students with disabilities to draw on what yosso (2005) calls ‘community [of] cultural knowledge, skills, abilities and contacts possessed by socially marginalised groups that often go unrecognised and acknowledged’ (2005:69). therefore, by using these symbolic forms of capital, students with disabilities will gain maximum benefits from their higher education studies. unfortunately, a lack of application of bourdieu’s forms of capital in education had the inadvertent consequences of making academic staff and administrators believe that disadvantaged students lack necessary forms of capital required for academic success, and this has, in some instances, encouraged ‘deficit thinking’ (yosso 2005:69). deficit thinking is the belief that students who do not succeed in their studies have personal deficiencies, that they are not intellectually capable of advancing or that they lack the motivation to learn. however, the application of bourdieu’s theory could emphasise the resources that people have and not resources they lack (pinxten & livens 2014). against this background, this article utilises bourdieu’s theory as appropriate theoretical lens for exploring the issue of parental and extended family support for students with disabilities in the south african higher education context. researchers who draw on bourdieu’s forms of capital make use of many different research approaches and methods, such as surveys, questionnaires, observations and interviews. bourdieu himself used predominantly ‘ethnomethodology’ (bourdieu 1986), which is an approach that included participant observation methods and extended in-depth interviews with research participants. these methods have enabled researchers to understand the life-worlds of the groups and individuals they have studied. central to bourdieu’s own research studies was a theorised understanding of the social groups and practices that he studied. thus, his research was not ‘grounded’, but rather theoretically motivated and informed by forms of capital. for the purposes of the present study, individual and focus group interviews were conducted with a view to understanding the support that student participants received from their parents. drawing on bourdieu’s theory, the interview transcripts were thematically analysed and clustered according to the ‘forms of capital’ that emerged from the data. sampling seventeen final-year students with disabilities participated in this study: 11 students participated in individual, semi-structured interviews and six participated in a focus group discussion. the final-year students were purposively sampled (creswell 2013) with the assistance of the student counselling unit and disability unit at the two higher education institutions in kwazulu-natal province. the type of disability and programme of study were not the foci of the study as it concentrated on disability regardless of the type and intensity. the students were initially invited using emails and whatsapp messages. the group was quite diverse in terms of gender and nature of their disabilities. semi-structured interviews and focus group as data collection methods semi-structured interviews are commonly used in qualitative research for their strength in allowing the researcher to gain in-depth understanding of a phenomenon (blandford 2013), which in this case was parental support for students with disabilities. to generate thick information and enhance the credibility of the study, a focus group discussion was also used to collect data. six students with various forms of disabilities were invited to participate in the focus group. all ethical considerations for research of this nature were rigorously adhered to (creswell 2009, 2013). both data collection methods were aimed at exploring the students’ experiences of parental support, and the analysis of the data was underpinned by bourdieu’s forms of capital. ethical consideration it is essential to adhere to ethical considerations when conducting research using representatives of a vulnerable group such as people with disabilities (creswell 2013; ramrathan, le grange & shawa 2017; ritchie & lewis 2003; yin 2011). the researcher thus adhered to the process for ethical approval as required by the selected universities of technology, and both granted permission for the study to proceed. the selected participants’ rights to confidentiality and to withdraw from the study at any point were explained to them, voluntary nature of their participation was emphasised and signed consent forms were procured. to adhere to confidentiality requirement, pseudonyms are used, while real names can only be accessed by the researcher. findings and discussion: parental support and ‘forms of capital’ the findings revealed that students had access to rich and diverse forms of capital as their parents and extended families were generally supportive of and committed to them. the findings are grouped in categories of (1) economic capital, (2) social capital and (3) cultural capital. there was considerable overlap across these groups, but the data findings are separated for analysis purposes. economic capital the first, and most obvious, form of capital that parents offered their children was economic capital in the form of financial support for their daily needs as well as for various other expenses such as a wheelchair or a motorcar. most parents supplemented government disability grants and student bursaries. economic capital thus includes all kinds of material resources that the students required. from daily needs to major expenses the data reveal how some students were financially dependent on their parents for their daily needs. student 1 explained: ‘they [parents] support me in every way possible. i always lose my glasses and they would buy them for me and my glasses are very expensive.’ (student 1, mangosuthu university of technology [mut], female) student 2 mentioned: ‘after the accident my family bought me a car to make it easier for me to attend [classes] because i needed to heal completely before i could stay in the residence. also, i did not qualify for nsfas before the accident and it took time to get it after i became disabled.’ (student 2, durban university of technology [dut], male) while non-disabled students generally find part-time employment in industries that typically employ students such as restaurants and shops, students with disabilities find it difficult to obtain part-time employment, either because of transport challenges or because of the physical nature of part-time work. a study by majola and dhunpath (2016) highlights the difficulty that people with disabilities face when they seek gainful employment. most students were thus dependent on their parents for their everyday expenses as well as for the more expensive items. supplementing state-sponsored financial support most of the participants had access to economic capital through bursaries, study loans and disability grants like nsfas. however, these funds were insufficient to cover the cost of living and needed to be supplemented by parents and families. student 3 averred: ‘my mom and i had to put money together because i get a disability grant from the government. the university didn’t assist me, they knew about the situation from my first year. i’ve never been assisted with devices for my disability.’ (student 3, dut, female) a student who participated in the focus group also found that the allocated budget was not sufficient: ‘due to my visual challenge i have to change my glasses sometimes more than twice, my uncle assist me with this hence my parents cannot afford it. i tried to enquire from nsfas office but could not be assisted in this regard.’ (focus group, mut, female) some students needed to use their bursary funds to buy medication or buy supportive devices, such as a wheelchair. the participants found that funding from nsfas was helpful, but there were many delays in the system that retarded payment of the funds to the students, and this caused financial hardships. bawa (2013) recorded a similar finding. in such cases parents had to make considerable sacrifices to assist their children. most participants felt that automated wheelchairs would make their lives easier because they needed to move from their respective residence to other buildings just like any other student. therefore, automated wheelchairs were considered to be a basic need. unfortunately, many students were not able to afford a wheelchair as they are very expensive. very few people can afford a device that costs about r30 000.00, and for these students this dream was unattainable. parents who lacked economic capital because of low paying jobs or unemployment could not assist their children in this regard. the financial contributions made by their parents were highly appreciated by the students, and they understood that without this economic capital support, they would have experienced even more difficulties in the pursuit of their studies. several studies have also highlighted the impact of socio-economic status of parents on their children’s career (ali et al. 2013; esau 2018). one of the participants explained that his parents looked forward with great interest to his graduation ceremony; he understood that his academic success was his way of repaying the cost of his parents’ investment in his studies. student 4 thus defined his graduation as follows: ‘the day when the investment matures.’ (student 4, mut, male) cultural capital bourdieu (1986) proposes three kinds of cultural capital: (1) the institutionalised state (which refers to educational attainment), (2) the objectified cultural capital (this concerns the possession of cultural goods) and (3) the embodied or incorporated state capital (which refers to people’s values, skills, knowledge and tastes). it appeared from the participants that they benefited from the cultural capital that their parents had instilled in them, particularly in terms of spirituality and their sense of independence. spiritual support from parents spiritual support emerged as a very important aspect of support that the students had embraced. they revealed that spiritual support that their parents had instilled in them played an important role in sustaining their lives and therefore their studies. student 3 explained: ‘i come from a prayerful family … parents always pray that their children become better people.’ (student 3, dut, female) one participant in the focus group agreed with the importance of spiritual support: ‘when i finished high school in 2012. i was supposed to start university in 2013 and 2014 but unfortunately i felt very ill and could not start. so somewhere, somehow i lost hope and thought that may be education is not for me. but my mom prays a lot and encourages us to do so and she was like i shouldn’t give up because i’m still young and i can still do it.’ (focus group, dut, female) the data revealed that these students had strong faith in god and believed that through their parents’ prayers, life would be better. they felt connected to their parents all the time. prayer in this instance strengthened faith and hope so that the student felt secure and comforted, even in the face of adversity. rule and mncwango (2010 in schoeman 2017) also found that around 63% of south africans prayed several times a day. however, blanks and smith (2009) and hartely (2004) found that religion and spirituality were not actively encouraged in higher education because of the wide diversity of religions that exist. nonetheless, prayer was used as a motivating factor that propelled these students to work hard and succeed not only academically, but as courageous young people who had faced and were still facing many challenges. this finding resonates strongly with bourdieu’s forms of cultural capital. while religion and spirituality are not directly actively encouraged by universities as observed by blanks and smith (2009) and hartely (2004), students’ religious societies are allowed in most universities and students have a right to practise their religion of choice. parental aspiration as motivation for students to achieve there are many ways of encouraging children to do well. some need not to be conveyed verbally, but may be portrayed through the lifestyle standard that the family set, which could guide and motivate their children to do well in life. student 9 described his family background as follows: ‘i think the standards they have set are too high both are educated, they are graduates. my mom has a degree in social science or social work i think. my dad has a master’s degree in philosophy and had a red gown. they both graduated from the university of kwazulu natal.’ (student 9, mut, female) participants from the focus group also shared similar sentiments: ‘i grew up in a family that i can say everyone is highly educated, being that mom and aunt are teachers…’ (student 5, dut, male) another participant also mentioned: ‘i come from a home where people are studying even my mom is, my cousins and i also have a sister who was at durban university of technology in 2014.’ (student 4, dut, male) parental aspiration and educational level play a crucial role in academic performance of children (chen & ho 2012). furthermore, chen and ho (2012:317) highlight the reciprocal relationship between the parents and their children. however, all or most parents have a vested interest in their children’s education and wish for them to succeed, especially when they will be the first in the family to achieve a university qualification. in this study, the majority of the participants came from households where the parents were well educated and worked as professionals. this status encouraged the students because their parents and other family members are their role models. in most cases parents understood the machinations of university life. according to bourdieu (1986:244), ‘the scholastic yield from educational action depends on the cultural capital previously invested by the family.’ this kind of relationship is reciprocal as chen and ho (2012:317) mention that ‘parents show their love by offering possible financial, material, and psychological support for learning, while the children return love by striving for academic excellence.’ students’ sense of independence some of the students seemed to have developed a very strong sense of independence and confidence in their own being. they agreed that all forms of support their parents wanted to give were welcome; however, their territory needed to be respected. student 10 stated: ‘my independency has taken over my whole life. i do not like people doing things for me. no matter how sick i am i always find a way to do something.’ (student 10, mut, female) this was echoed by student 7: ‘we all have it in our minds that we can do things on our own but how if my parents starts coming to the university with me. then it’s going to make me feel like different from other people.’ (student 7, mut, male) student 8 also cherished independence: ‘you know i did not involve anyone in the whole process of application and registration. at the beginning of the year i came here alone since i had a provisional offer. i was up and down trying to get information like anybody else until i was accepted. i went back home to take my stuff and i could not expect my granny to come with me from all the way from home to the university, as much as she wanted to. i assured her that i would be ok. i was just phoning her about everything because i knew she was worried.’ (student 8, mut, female) it emerged from the data that some students did not want their parents to accompany them to university (bethke 2011), as it might create the impression that they were struggling and were different from other students. these independent students wanted to eradicate the stereotypical thinking that people with disabilities are unfit to do things on their own. a previous study also found that the self-confidence and self-image of students with disabilities improved as they become more independent (darling 2013). at this level, students want to build a new image of themselves by changing their image of vulnerability to being perceived as capable, independent individuals as they prepare for the world of work. it is also important to acknowledge that these students are at a transitional stage, that of emerging adulthood (garret 2015). they thus insisted that their own mode of understanding disability should change from charity model to social model. they did not want their parents to hover over their spaces as ‘helicopter parents’ who want to take over and lives of their children (kiyama et al. 2015). communicating progress to parents although students felt that they needed space to manage their lives, they also had a sense of responsibility as they updated their parents on their progress. the data showed that they were willing to share their academic progress reports with their parents. one participant from the focus group said: ‘unfortunately i cannot send the results to her [my granny] because she is not educated. but when its holidays she does ask about how school was and whether i have passed or not.’ (focus group, dut, male student) student 4 stated: ‘i just usually screengrab my results for my mom because she lives very far and i only get to see her in december. however she is updated with everything for instance when i write tests or do presentation she knows. i have even given her my student portal password.’ (student 4, mut, male) student 2 offered the following: ‘my parents are supportive and always call to check how my exams went and the results. my results are posted and they do not wait for me to open it and i am happy with that since there is nothing to hide. they deserve to know anyway.’ (student 2, dut, male) the communication channels described above seemed important in strengthening the support the students required. one participant even mentioned that he would be happy if the university had direct communication with the parents. the students were transparent and wanted to be trusted and supported, but from a distance. this not only ensured important social connections but also gave them the freedom to manage their lives. social capital parents are generally key members of the social network and play a prominent academic role in the lives of all students (ferrara 2015). while they might not always be able to assist their children financially or academically, they can offer forms of social support. although some parents of participants did not have extensive business or professional networks, they were nevertheless able to provide considerable material care and moral support to their children. commitment and sacrifice: the wealth of mothers mothers played a particular role in ensuring the well-being of their children. the following extract describes the support and care student 3 received from her mother: ‘in my first year she [my mother] used to come here to make sure i could attend classes. you know we attend in 3 different campuses steve biko, ritson and ml sultan campus. the challenge was i did not have an automated wheelchair, and could not wheel myself whole day. so she would come all the way from inanda to push me around wherever my lesson was at the time. as you may know lessons are separated by 10 min if we started at steve biko in 10min we have to be at ml sultan. again sometimes there are intervals, where you don’t have a lesson in between or the lecturer is absent, she will wait with me. she did this for three months until she could afford to buy me a second hand [automated] wheelchair.’ (student 3, dut, female) not only did student 3’s mother support her child by literally ensuring that she was able to get to her classes, but she managed to accumulate funds to purchase an automated wheelchair that helped her child to become more independent. such extensive and compassionate maternal support was not uncommon among the interviewees. student 6 shared the following: ‘my mom had to take a month leave in order to support me after the accident to see to it that i was adjusting well to my new status of disability.’ (student 6, dut, male) student 8 explained how her mother assisted her with childcare: ‘my mom has done a lot for me, she is even looking after my two year old son whilst i am at varsity. she takes him to a day care without which i would not be here.’ (student 8, mut, female) the care and support offered by mothers is a rich source of social capital, and it was valued by the students, and without it, they would not have been able to succeed in their studies. the participants did not refer much to the role their fathers provided; in some cases the father was referred to as deceased or not taking responsibility, which is consistent with the finding by taderera and hall (2017). the extended family: a support network many students had access to a wider social network comprising family members and friends, and the latter included residence roommates and peers. some participants’ parents were deceased or not able to support them because of poor health. in such instances other family members supported them, as student 6 explained: ‘since my mom is not well; my brother has been a pillar of support. … he is my mentor we talk about everything more especially as i am at the university since he understands university life and challenges. he always give me good advices and sometimes i call him if something i do not understand happens or may be when i feel pressure with my tests. he always listens and sometimes just laughs at me.’ (student 10, mut, female) student 9 had a grandmother to offered unstinting support: ‘for me it is quite complicated. both my parents have passed on, my grandmother is not educated but she tries everything within her capability to assist me.’ (student 9, mut, female) the spirit of ubuntu was clear in cases where orphans were able to pursue their studies with the assistance of grandmothers (sampson 2015) and extended families. this spirit is based on a culture of taking care of others, and not only of blood relatives. the significance of the interplay of bourdieu’s ‘forms of capital’ becomes evident when helping an orphan; it has a social capital, economic and cultural capital impacts. emotional and practical support most of the students admitted that it would have been difficult to cope without the emotional and practical support of their parents (or supportive others). knowing that your parents were consistently supportive and were always available was important for student 5. ‘my parents are supportive and always call to check how my exams went and the results. i remember one day i was panicking because my duly performed (permission to write exams) was very low for a certain subject. i had explained that to my mom because we talk about everything. on the day of examination she called in the morning she could feel that i was crying. i was much stressed she calmed me down and encouraged me, saying that i have worked so hard thus far and this time around i will make it again. you know what, i passed that module with 60 per cent!’ (student 5 dut, male) some focus group participants confirmed that while the emotional support of parents was important, they sometimes needed to be ‘selective’ in what they shared: ‘i would say emotional support is very important, especially when it comes to your academics. in varsity we go through a lot, you meet a lot of different people, from different backgrounds and you might want to tell your parent about all the stuff you are going through. but they might not understand so you then become selective in what you share with them. and it may become difficult to cope when you do not have any emotional support from parents.’ (focus group, mut, female) while students appreciated the support they received from their parents and acknowledged their contribution to their academic success, it also became clear that they preferred not to completely share all of their challenges with their parents. the students wanted to protect their parents from some of the distress that they were experiencing, but they also did not want their parents to feel that they were not coping with university life. it underscored the reciprocal nature of social capital. the students also did not refer to support offered by disability or student counselling units. this finding is supported by the findings of martinez (2015), who found that students with disabilities benefited more from personal and familial contacts than from institutional support. conclusion drawing on bourdieu’s forms of capital as theoretical lens, this article has reported on a study that explored forms of economic, social and cultural capitals that parents and extended families provide to students with disabilities to enable them to succeed in two higher education settings. the study found that while parents struggled in the economic capital sphere as it was costly to provide expensive items such as automated wheelchairs and other assistive technologies, they were often able to assist with more basic requirements and to supplement state provisions. the study also found that parents and extended families were able to provide rich and varied forms of cultural and social capital. for example, while economic capital was necessary for these students with disabilities to cope with the challenges they faced, it was generally the cultural and social capital that their mothers provided that formed the basis of their of their support. this article also suggests that universities of technology in south africa should explore the potential of parental support for students with disabilities. acknowledgements competing interests the authors have declared that no competing interests 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methods and design results discussion conclusion acknowledgements references about the author(s) talia opperman division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa michelle botha division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation opperman, t. & botha, m., 2025, ‘the potential and challenges of an online bible study group for persons with disabilities’, african journal of disability 14(0), a1721. https://doi.org/10.4102/ajod.v14i0.1721 note: the manuscript is a contribution to the topical collection titled ‘disability, spirituality, and belonging,’ under the expert guidance of guest editors, dr chioma ogochukwu ohajunwa, dr nafisa mayat and dr adele ebrahim. original research the potential and challenges of an online bible study group for persons with disabilities talia opperman, michelle botha received: 19 mar. 2025; accepted: 28 july 2025; published: 06 sept. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: research shows that persons with disabilities can derive significant benefits from participating in religious communities and activities. however, they often face significant physical and attitudinal barriers to participation. the use of digital platforms for religious gatherings has increased since the coronavirus disease 2019 (covid-19) pandemic and may hold potential to promote accessible religious participation. objectives: this study explored the benefits and challenges of an online bible study group for persons with disabilities hosted within a christian pentecostal congregation in cape town, south africa. method: a phenomenological study design was adopted, and data were gathered from four participants using semi-structured interviews. thematic analysis was employed. results: although some components of the online environment were found to be beneficial for participants’ spiritual well-being, other components were shown to be challenging, such as technological barriers, a lack of direct physical interaction and feelings of isolation. the digital space provided only partial inclusion and does not represent a full solution to exclusionary religious spaces. conclusion: church leadership must engage more rigorously with strategies of disability inclusion, which may include digital components. contribution: this research contributes to the fields of disability studies, religious inclusion and digital engagement. recommendations include the use of adaptable technologies, leadership training in disability inclusion within a religious space and developing more engaging platforms to foster inclusion within these religious spaces. keywords: disability; spirituality; digital access; well-being; inclusion; christianity; fellowship; support. introduction scholars have pointed out that, despite a theological focus and moral imperative towards inclusivity in christianity, there is a lack of strategies to effectively include persons with disabilities in church and other religious gatherings (carter et al. 2023; retief 2016). hardwick (2021) offers insight into church planning, asserting that the needs of persons with disabilities are frequently regarded as secondary issues, handled only after the fulfilment of the church’s perceived fundamental purposes of preaching and outreach. this lack of inclusion is unfortunate as research by lorenzo and duncan (2020) and carter (2024) highlights the potential benefits of spiritual well-being derived from religious practices for persons with disabilities, including promoting coping, social inclusion and better quality of life. through spiritual frameworks, persons with disabilities receive profound sources of belonging, identity and meaning (imhoff 2017). however, when religious communities do not make intentional efforts to include persons with disabilities, they may face physical barriers (such as inaccessible buildings) and attitudinal barriers (rooted in stigma related to religious discourse) to participating in church. regarding the latter, the moral or religious model of disability, as seen in several faiths including christianity, has been associated with the potential for discriminatory practices, as it claims that disability is a result of a moral failing on the part of an individual, family or community (andrews 2016). further, christian beliefs have been criticised for prioritising the healing of disabled bodies, which supports a normalising drive rather than the acceptance of diversity in the church (botha in press; imhoff 2017). while some religious interpretations may associate disability with sin, a contrary belief holds that each person is made in the likeness of god and has inherent value and divine purpose regardless of ability (yong 2007). for instance, isaac, who is blind, and moses, who stutters, are protagonists in sacred texts, showing that individuals with disabilities are not just subjects of charity but vital to the holy narrative (imhoff 2017). similarly, scholars have challenged limiting perspectives through promoting the idea of an accessible god, who is familiar with and present in the midst of suffering, which is viewed not as punishment but as an opportunity for spiritual growth and fulfilment (creamer 2012). therefore, fostering an inclusive church environment that upholds the rights and dignity of persons with disabilities requires a multi-level approach. the united nations convention on the rights of persons with disabilities (uncrpd) sets forth the objective of complete inclusion for persons with disabilities, which refers not merely to accessible surroundings but also to the acknowledgment of persons with disabilities as equal participants in social and economic spheres (un 2007). genuine inclusion, therefore, goes beyond the mere elimination of physical barriers, such as stairs or inaccessible seating; it also requires dismantling social and relational barriers that impede full participation (thomas 2004). churches should endeavour to become more inclusive places by reevaluating their policies, values and ways in which persons with disabilities are involved and by actively addressing the physical and attitudinal barriers they experience (yong 2010; zondi 2020). it is essential that the perspectives of persons with disabilities are held at the centre of this process. this study explored a measure to promote disability inclusion in a local church congregation, namely, an online bible study group. the group was started during the coronavirus disease 2019 (covid-19) lockdowns by a member of the church congregation (a person with a disability) who had identified a gap in terms of opportunities for persons with disabilities to participate in church activities because of access challenges. the covid-19 pandemic, which started in march 2020, had a substantial influence on regular church attendance while also causing one in five individuals throughout the world to become housebound (bryson, andres & davies 2020). a hurdle was faced by many believers because of the closing of physical church facilities and the cessation of in-person services. while societies faced the limiting of their movement through lockdown measures, some persons with disabilities drew attention to the fact that such limitations have been and remain part of their daily reality (lourens & watermeyer 2023). this was the case for the participants in this study. despite its challenges, covid-19 provided an opportunity as persons began to explore what remote platforms could offer in terms of maintaining participation in spiritual activities (bryson et al. 2020). however, considerations on the potential and operation of the ‘online church’ far pre-date the pandemic, as seen in hutchings (2011). hutchings (2011) states that online churches can serve as digital equivalents to physical congregations, providing opportunities for worship, fellowship and support. virtual space provides a distinct opportunity for establishing connections and experiencing a sense of belonging. hutchings (2011) examines the substantial transformations in religious engagement that the development and increasing use of online platforms has brought about. in addition to making it easier for religious teachings to be conveyed, these platforms help to build communities around common values and beliefs. others consider that the sick, aged and individuals with disabilities may be isolated from spiritual connection and have accepted that the online church may be credible and helpful to their ability to share a fulfilling religious experience (russell 2016). however, while virtual attendance may help persons stay connected to their faith, it cannot replace the physical experiences that come with worshiping in-person. according to the research, traditional religious practices, which often include group ceremonies and physical contact, are important for mental health and social support (upenieks et al. 2023). in addition, a lot of religious activities stress fellowship, which is usually thought to be better when people are physically together (hutchings 2011). while the embracing of remote platforms holds potential for developing the spiritual well-being of persons with disabilities, there are undoubtedly tensions between inclusion and exclusion in the digital realm, especially as lockdown restrictions were lifted and traditional in-person church services resumed. understanding the expectations and experiences of individuals with disabilities in the digital religious realm is therefore important to provide valuable insights into the effectiveness of virtual religious practices in meeting the spiritual needs of persons with disabilities. to this end, this study sought to comprehend the experiences of participants in an online bible study group, including positive and negative experiences, feelings of belonging or exclusion within the online community, and their expectations and intended outcomes with a view to make recommendations for how churches can promote greater inclusion of persons with disabilities both online and offline. the study aims to explore the experiences of persons with disabilities of participation in an online bible study group hosted by a pentecostal church in cape town, south africa. research methods and design research design a phenomenological methodology was employed for this research. phenomenology, as a qualitative approach, aims to comprehend the fundamental elements of individuals’ lived experiences through focusing on individuals’ interpretations of specific occurrences (van manen & van manen 2021). consistent with phenomenological methodology, semi-structured interviews were selected as the preferred method for data collection. this enables the researcher and participants to pursue a topic in a more fluid way than with structured approaches, making it possible to raise and explore emerging insights (adams 2015). the decision to employ semi-structured interviews was supported by o’leary and hunt (2017), who state that the research topic should dictate the selection of methodologies and procedures. research setting the bible study group is hosted under the auspices of a christian pentecostal church in cape town, south africa. the pentecostal movement forms part of a broader christian renewal movement. it places strong emphasis on the presence of the holy spirit – understood as god’s spirit who indwells, and operates among, believers in jesus christ to provide direction, comfort and discernment (retief 2016; yong 2010). scholars such as yong (2010) and sande and ringson (2021) critically examine the theological stance on disability within the renewal movement, particularly the strong emphasis it places on miraculous healing. it often rests on the presumption that disability is a deficit or a sign of spiritual brokenness requiring divine intervention. such a focus can inadvertently reinforce an assumption that life with disability holds no spiritual value and, consequently, hinder the inclusion of persons with disabilities who may feel marginalised or pressured to seek healing, contrary to their own desires or beliefs (sande & ringson 2021; yong 2010). the church includes around 1500 members who meet regularly for church services and other activities in-person. the bible study group was started by a member of the church, a person with a disability, to address access barriers faced by persons with disabilities to attending in-person church activities, notably related to inaccessible transport and church infrastructure. the bible study meets online to study the bible, pray and socialise together. it is also important to state here that the researcher (the first author) is a member of the larger congregation. as someone who has experienced personal growth through weekly attendance of a bible study group, the researcher was motivated to study an online bible study for persons with disabilities to understand what role this form of engagement with scripture can play in their lives. her positionality as an insider researcher will be discussed in more detail below. sampling and recruitment total population sampling was used, as advised by o’leary and hunt (2017). for small, data-rich groups, total population sampling remains an effective method because it involves including every member of the population who meets the study criteria, thereby maximising the depth and breadth of information collected. for inclusion in this research, participants were required to be over 18 years old, be active members of the bible study group and self-identify as a person with a disability. anyone under the age of 18 years or who did not self-identify as having a disability was excluded. after applying these criteria to the total population of the bible study group, four participants were identified as eligible. patton (2002) says that information-rich cases are important for getting a deep understanding of what people go through every day. larger samples are not necessarily required for generating rich descriptions (palinkas et al. 2015). the final group of four people in this research is thought to be sufficient to obtain useful details about the phenomenon being examined. the recruitment process began with seeking permission to conduct the study from church leadership. a letter was sent via email describing the project’s aim and objectives. upon receiving approval, the researcher requested an opportunity to address the group at one of their regular meetings. this session enabled the researcher to introduce the project, talk about the research goals and answer any questions that possible participants might have. the participants were given the contact details of the researcher during this meeting so they could contact her privately if they had any more questions and to consent to participate. each participant received the project information sheet and consent form before data collection took place. participants participants come from different backgrounds and are persons with various disabilities. table 1 describes the participant demographics. the names provided are pseudonyms, which the participants chose to maintain confidentiality. table 1: participants’ demographics. data collection semi-structured interviews were conducted remotely using voice and video calling via whatsapp – the same platform used for the bible study group. this approach was used to guarantee accessibility and inclusivity, considering the many physical and geographical limits the participants identified. an interview guide with semi-structured questions was developed to facilitate the interviews. interviews took place in english, which is the primary language used in the group, though participants were given the option to conduct the interview in afrikaans, another predominant language in the church congregation. the length of the interviews ranged from 45 min to 60 min. the fact that the interviews were semi-structured allowed for flexibility in the conversation while ensuring that the primary themes relating to the research question were maintained (bryman 2008). interviews were arranged at convenient times for the participants. interviews were staggered into multiple shorter sessions where needed, allowing participants to take breaks. being new to interviewing methods, the researcher prepared by doing a mock interview with the supervisor (the second author) where she received feedback on her approach. pseudonyms were allocated to participants during the transcription phase to safeguard their identities. the participants themselves selected these pseudonyms, which added a dimension of personal engagement. the pseudonyms were chosen to reflect positive qualities, with names such as ‘love’, ‘peace’, ‘kindness’ and ‘courage’ being inspired by the ‘fruit of the spirit’ from galatians 5:22–23. the church organisation is also not identified in this research. recorded interviews were transcribed and anonymised, and both the digital recordings and physical copies of the transcripts were securely stored. hard copies of the data and consent forms were stored in a file cabinet secured with a lock. digital files were password-protected in a folder on the researcher’s laptop and backed up in case of loss or theft. data will be retained and destroyed after 5 years. data analysis inductive thematic analysis was used in this study, meaning that themes were not predetermined (clarke & braun 2014). the phenomenological paradigm emphasises the comprehension of participants’ lived experiences, and, to this end, thematic analysis was used to carefully examine the data, looking for common themes or patterns in participants’ answers. this method helps organise detailed and sometimes complicated narratives into clear categories, showing what is similar and different in participants’ experiences. interviews were transcribed and the researcher read and re-read the transcripts to familiarise herself with the data (clarke & braun 2014). the researcher then began to code the transcripts, involving identifying recurring ideas and experiences in the dataset (clarke & braun 2014). codes were then organised into themes, which involved re-reading transcripts to make sure that the themes accurately caught the main ideas and feelings of the participants. each theme was given a descriptive title and was supported by direct quotations and instances from the interviews, anchoring the research in the participants’ own expressions (clarke & braun 2014). rigour and trustworthiness ensuring rigour and trustworthiness is a criterion for promoting quality and minimising biases in qualitative work. rigorous research must guarantee that the results as closely as possible represent the meanings that participants produce in relation to the phenomenon of interest (murphy & yielder 2010). to this end, open-ended research questions facilitated participants to express their thoughts and opinions without any restrictions, thereby yielding comprehensive and elaborate insights into their experiences (creswell & poth 2016). moreover, after conducting the initial analysis and identifying preliminary themes, member checking was conducted with participants via whatsapp. this was to confirm that participants comprehended and concurred with the interpretations derived from their responses (shenton 2004). if discrepancies or misunderstandings were identified during member checking, the researcher revisited the data and revised the interpretations to ensure accuracy. further, this study maintained trustworthiness by regular discussions with a research supervisor, who offered an external perspective that could challenge and refine emerging themes. debriefing with the supervisor provided an important safeguard against subjectivity, critically questioning potential biases and ensuring the research adhered to ethical and methodological standards. positionality a researcher’s positionality, including their background, beliefs and experiences, can influence how data are collected and interpreted in qualitative research. the researcher in this study was careful to reflect consistently on her status as an insider to the pentecostal faith and to this church community. as someone who shared a common faith with the participants, the researcher was able to build rapport and trust through a common language, which facilitated more open and candid responses. however, the researcher was also keenly aware of the potential for bias, particularly when facing critique of the church from the participants. in this regard, discussions with the research supervisor and reflective journalling were useful to unpick conscious bias and to bring unconscious bias to the surface (denzin & lincoln 2011). journalling was also valuable to ensure the dependability of the research, referring to transparency concerning study design, data collection and analysis procedures. by maintaining detailed field notes in her journal, as well as interview transcriptions and analytical memos, the researcher ensured that each step was transparent and traceable. ethical considerations the research received ethics approval from the health research ethics committee of stellenbosch university (s23/10/258) for the period 11 march 2024 to 10 march 2025. informed consent from the church leadership and then from all participants prior to their interviews was sought. each participant was informed of the research purpose, their role and their rights, which included the ability to withdraw from the research at any time without penalty. informed consent was not only verbal but also documented to guarantee that all participants had a comprehensive understanding of the research objectives. the potential emotional distress that participants could have experienced when discussing their personal experiences was considered. it was important that the participants felt safe and at ease during the entire process. they did not have any emotional distress, and interviews could all be conducted and completed. however, contingencies (such as referral to local, free counselling services) were in place to support participants if they had become distressed. the research was conducted with empathy and respect as a result of the contemplation of the emotional well-being of the participants. results four themes emerged from the data analysis. firstly, ‘physical barriers to participation’ demonstrates the challenges that persons with disabilities encounter to accessing and participating in church activities in-person. secondly, ‘emotional and spiritual support’ forms a contrast with the barriers and frustrations described in theme 1 as participants describe the space of safety, support and spiritual upliftment which the online bible study has provided. thirdly, ‘role of technology’ explores the benefits for access, as well as the frustrations, that technology holds. finally, ‘critical issues of voice, silence and exclusion’ considers the nuances of inclusion and exclusion as participants recognise the online space as valuable but still desire inclusion and a voice within the main church congregation. physical barriers to participation participants described encountering barriers to participating in church services in-person, namely, mobility issues and difficulties in accessing transportation. the online bible study group was formed to meet these challenges. mobility issues participants noted the struggle they face in attending in-person church services. they attribute this struggle to their impairments in combination with environments that do not accommodate their impairments. for instance, kindness said: ‘due to my mobility issues, i wasn’t able to attend church’. but later they added: ‘in our church building, there’s no accommodation made for persons with mobility disabilities’. courage similarly shared: ‘ok. the one thing i would say is make it more accommodating, like in my case … i can hardly walk. i’ve got to make use of a crutch, or a walker and it is so frustrating … when i can’t even go to church honest with you, i do not attend the church anymore … because of the stairs i cannot do the stairs.’ (courage) these issues could be avoided if universal design principles were applied, ensuring buildings are accessible to everyone (carter 2023). these results align with the social model of disability, which asserts that disability stems from the social relationships that marginalise and disadvantage persons with impairments (thomas 2004). according to carter (2023), congregational attitudes shape the accessibility and inclusiveness of physical venues. if a congregation does not anticipate or expect persons with disabilities to actively participate, they may unintentionally exclude them by neglecting to provide the appropriate accommodations. transport difficulties access to transport is a widely cited barrier to participation for persons with disabilities, especially in lowand middle-income countries (duri & luke 2022; maart et al. 2007; vergunst et al. 2015). beyond physical access challenges, participants mentioned issues of safety: ‘traveling with public transport wasn’t safe or confident for me … i didn’t attend church for many months due to travel difficulties.’ (peace) even where specialised transport systems exist, these frequently fail to satisfy user requirements, whether because of restricted availability, prolonged wait times or insufficient reliability. dial-a-ride, for example, is a specialist transportation service that offers door-to-door transit for persons with mobility and other impairments. kindness said of this service: ‘dial-a-ride is a huge let down for anybody with mobility issues’. these barriers form a contrast with the ways in which participants describe the online bible study group as a supportive and safe environment. emotional and spiritual support in contrast to the challenges, frustrations and insecurity described by participants in the previous section, they describe feeling encouraged, safe and valued within the online bible study group. the support and care from fellow group members were often mentioned as creating a sense of belonging and community and spiritual well-being. supportive and safe environment participants describe the relationships in the group as reciprocal where they both give and receive support, fostering a sense of mutual care and belonging. kindness said: ‘we do life together’. this highlights how the group functions as a close-knit community beyond just studying the bible. the phrase ‘do life together’ implies a deeper and broader relationship. this group can be seen to play a key role in combating the isolation that characterises the experience of many persons with disabilities, due in large part to the inaccessibility of the physical environment that limits their social participation (macdonald et al. 2018; watermeyer & swartz 2016). another positive aspect of the group is safety from the fear of being judged. love described this as the freedom that members felt to ‘be themselves’. other participants shared that the group made space for them to share difficult experiences while feeling safe: ‘yes, we in this group … you’re safe to express how your family may have hurt you.’ (peace) ‘there’s no fear of thinking, ‘what are they going to think of me?’ … we do not judge each other in this group. we are open. we are free-spirited. it is amazing.’ (courage) these experiences align with work that shows positive correlations between improved mental health and disability group membership (zapata 2022). these experiences also demonstrate an important contrast with the ways in which persons with disabilities can often feel pressured to silence certain experiences in favour of portraying an image of capability or stoicism (watermeyer 2009; watermeyer & botha 2023) or may feel prohibited from expressing dissatisfaction or complaint (lourens 2018). this can be particularly so in faith-based spaces where persons with disabilities may feel that admitting struggle will be misconstrued as a failure of their faith (botha in press). spiritual growth and guidance alongside the emotional support, participants describe the spiritual growth they experienced in the group, particularly how, through the group, the holy spirit had helped them to grow closer to god. in christian faith, ‘the holy spirit’ is seen as a guide that plays a crucial part in a believer’s spiritual life by guiding them toward a fuller understanding and realisation of god’s truth, especially as revealed in the scriptures (yong 2010). peace mentioned how, in moments of personal anguish and prayer, ‘the more the holy spirit is leading me to scripture, and now i understand … i have an assignment from the lord’. this corresponds with jesus’ statement in john 14:26: ‘but the advocate, the holy spirit, whom the father will send in my name, will teach you all things and will remind you of everything i have said to you’ (niv). in this scripture, the holy spirit presents as a guide to christians in understanding their purpose, particularly when going through times of spiritual adversity. similarly, courage talks about their experience of being taken to ‘the next level with the lord’. this presents the holy spirit’s influence as reflected in romans 8:26: in the same way, the spirit helps us in our weakness. we do not know what we ought to pray for, but the spirit himself intercedes for us through wordless groans. (niv) this demonstrates that persons with disabilities may still have a fulfilling spiritual life even if they are unable to attend typical church services, fostering a sense of belonging and inclusion online (carter 2024). another central aspect of the group’s gatherings is the provision of consistent spiritual encouragement. as courage observes, ‘every wednesday morning, you feel so uplifted spiritually’. peace added: ‘this group is so, so very important for me because we really encourage one another’. by giving god’s love, hope and guidance, the church can help people get to know each other and build relationships (zondi 2020). the church pulls its members up through shared faith, fellowship and support, giving them the tools they need to build a strong, united base that can withstand hardship and promote peace and unity. hutchings (2011) and russell (2016) provide added evidence for this by underlining the fact that fellowship within religious communities plays a vital role in the transmission of religious identity and gives crucial support, particularly during times of difficulty. this positive influence is clear in participants’ experiences within the bible study group. role of technology technology takes centre stage in supporting connections and enabling participation in this setting. while there are clear advantages, participants’ accounts also reveal challenges with access to technology. accessibility through technology smartphones and other devices bridge the gap caused by physical barriers. peace said: ‘if it wasn’t for smartphones, we would be disconnected from the world of information’. similarly, love shared: ‘with modern technology, we do video calls. it’s almost like we are right in each other’s company physically’. these participants describe engaging in fellowship in a way which suggests that this vital spiritual component need not be compromised in the online space (hutchings 2011). technology also enables comfort and safety, which is particularly beneficial to persons with chronic health conditions or severe mobility impairments. love shared: ‘technology allows us to participate even from our beds’. again, this forms a stark contrast with the struggles described in theme 1 and strengthens the view of this online group as a safe and non-judgemental space. this supports the notion that the online church holds potential to promote the spiritual and emotional well-being of persons with disabilities (russell 2016). technology barriers although technology offers many benefits, barriers remain for persons with disabilities. even when they have access to assistive devices, as peace advises, ‘love has to often help me and log me into the chat as i don’t always have help’. technology can perpetuate exclusion. online platforms are often inaccessible or not user-friendly, offering limited support for those who may live alone with no help or may not have an appropriate assistive device to access the platform (smit 2021). socio-economic constraints to accessing assistive technology are also a factor. participants shared that they often needed support to engage with technology. courage, for example, said: ‘luckily, i’ve got my children around me, and they help me a lot’. kindness described how they attempt to help other group members with the technology, ‘i provide step-by-step guides on using whatsapp calls’. these potential barriers and challenges must be taken into account when churches consider online alternatives as access measures. it is important to avoid the assumption that technology presents a seamless solution. rather, the collaboration between the church and its members, which includes persons with disabilities, should be ongoing in looking for ways to be more inclusive (amenyedzi 2024). the church should use the ability of both members and specialised organisations to make informed decisions about digital platforms and devices to use. critical issues of voice, silence and exclusion while participants were technically included in the online, disability accessible bible study group, many found themselves having to advocate for their inclusion within the broader church community. the concerns of voice and silence are important to evaluate the true efficacy of inclusive measures. alhuzail and levinger (2022) note that ableist cultural norms not only silence the voices of persons with disabilities but also limit their visibility in public spaces, resulting in a form of enforced silence around their identities and needs. the bible study group members expressed feeling that they had to ‘speak up’ for themselves in relation to the rest of the church congregation. kindness said: ‘i make sure that the special needs group gets heard’. the sense here is that, if they did not make sure they were heard, they would be at risk of being forgotten. kindness also underscored the significance of accommodating persons with disabilities, emphasising that their meaningful engagement is dependent upon thoughtful modifications: ‘our group would like to be involved, and of course, our involvement would require accommodation in order to help’. in this, the desire for involvement in the main church is clearly expressed. this prompts the question of whether a segregated group is truly an access and inclusion solution, or whether it might in fact perpetuate isolation, invisibility and silence. on the contrary, peace shared an experience of inclusion in the broader church congregation that was positive and affirming. although initially anxious to participate in a church outreach, simple adjustments and care from the congregation made this a good experience: ‘the evangelism group? i’m like, wow, you can’t put me in the evangelism group. how am i going to get around? … people at my church said, “no, sister. you can. you can stand, you can take the mic, and you can bring hope to others.”’ (peace) here, peace is recognised as being able to make a contribution and as having a divine purpose. simple adjustments and support can help persons with disabilities use their voices effectively in the church’s physical spaces, as shown by this case. while some churches are actively working to eliminate barriers to full participation, others have not yet made accessibility a priority (carter et al. 2023). the lived experiences of persons with disabilities can offer valuable insights on how churches can become more inclusive. their recommendations can be an important factor for church leaders to ensure that the church environment is both physically and socially accommodating. moreover, the tension between purported societal openness to inclusion of persons with disabilities and the persistence of exclusionary practices highlights the need for continued advocacy to ensure that inclusion is not merely a legal formality but a lived reality. discussion the research findings demonstrate the potential of online spaces to enable spiritual connection, growth and support for persons with disabilities. participants identified the physical inaccessibility of traditional church structures as a significant challenge. these barriers demonstrate both the physical restrictions imposed by particular impairments and the larger cultural apathy towards providing accessible environments leading to disability (shakespeare 2013). the lack of accessible design not only makes it impossible for persons with disabilities to get into the building but also supports social exclusion by making them feel like they don’t belong to the community and religious spaces (watermeyer & swartz 2016). these barriers are also indicative of the relationship of the church to disability as an expected and valued aspect of a diverse congregation (carter et al. 2023). reliance on inadequate specialists or public transport further separates persons with disabilities from access to spaces of spiritual development and well-being, meaning that efforts towards inclusivity must think beyond the bounds of the church building (duri & luke 2022; maart et al. 2007; vergunst et al. 2015). in contrast to these challenges encountered in conventional church settings, participants describe receiving emotional and spiritual support in the online space. participants frequently talked about the sense of community and encouragement they experienced within the group, characterising it as a ‘prayer answered’. participants felt enabled to openly and without fear of judgement discuss personal challenges, family issues, pain and spiritual issues. this supportive environment is in stark contrast to the isolation that often characterises persons with disabilities’ experiences in societies where disability is frequently stigmatised and sharing personal struggles may be met with misunderstanding or silence (lourens 2018; watermeyer 2009; watermeyer & swartz 2016). this fear of being misunderstood may be exacerbated in religious settings because of beliefs such as an imperative for christians to demonstrate long suffering with christ (botha in press). the participants’ accounts suggest that the bible study group counteracted a societal pressure to behave with stoicism, enabling them to embrace and share vulnerability. scholars have suggested that the ability to ‘be real’ about lived experiences, which may include struggle or pain, is essential to promote belonging and well-being for persons with disabilities (lourens 2021; watermeyer & botha 2023; watermeyer & swartz 2008). the spiritual lives of participants were also enriched through attending the online group. they described growing closer to god and receiving guidance from the holy spirit during difficult times, consistent with biblical teachings on the holy spirit’s role in guiding christians towards spiritual awareness and resilience. consistent spiritual encouragement emerged as one of the group’s primary benefits. this strengthens the members’ sense of purpose and allows them to keep a strong connection to their faith, supporting the assertion that persons with disabilities can experience profound spiritual joy outside traditional church settings (carter 2024). according to zondi (2020), the church’s role in showing god’s love and establishing fellowship is critical to develop unity and resilience, which is consistent with the experiences shared by group members. technology is key to enabling these emotional and spiritual benefits. that a participant described joining the group from her bed shows how technology can be enabling and speaks to the openness of the group to meet people where they are at. however, technology also introduces barriers, and hence, it should not be viewed as a seamless solution. issues such as usability, affordability and accessible design, which have been identified as issues in promoting inclusive digital participation, resonate (smit 2021). similarly, the online group in itself should not be viewed as a complete solution to the exclusion of persons with disabilities from conventional in-person gatherings of this congregation. although members are welcome and supported in the online bible study, which has been designed with inclusion as its aim, true inclusion in the larger church remains a challenge. this must encourage us to take a critical view of inclusive measures to question both their benefits and their limits, and perhaps even the ways in which they may re-inscribe segregation (botha et al. 2023). in contrast, even minor changes may empower persons with disabilities to offer their voices in unexpected ways, as seen in the story shared by peace. the bible study participants’ experiences might give us a significant insight for church leaders looking to establish a more inclusive environment in which persons with disabilities are valued and actively encouraged to engage. recommendations based on the results, the following recommendations are made: improving accessibility: faith-based organisations should consider creating accessible online platforms for remote engagement with church activities, but not view these as a complete solution to disability inclusion in their congregations. training for leaders: church and other faith leaders should be equipped with knowledge on disabling barriers, the design of inclusive spaces and the ways in which religious discourses can negatively impact on inclusion of persons with disabilities in church and faith-based organisations. fostering community and belonging: churches and other faith-based organisations should develop intentional programmes to build communities that recognise and include disability as diversity. this could involve mentorship programmes, integrated social events and consulting with members with disabilities on ways to be more inclusive. ongoing research and evaluation: establishing a feedback loop will assist faith-based organisations to develop inclusive planning and programming. collaboration with disability advocacy groups: faith-based organisations should form collaborations with disability advocacy groups as information resources on assistive technology, digital inclusion and inclusive design of physical spaces and programmes. incorporating diverse perspectives: involve persons with disabilities in decision-making, planning and leadership structures of the church or other faith-based organisations to ensure that their needs and perspectives are represented. limitations we acknowledge the limits of this research as a small qualitative study. although we cannot make generalisable claims on experiences of persons with disabilities in accessing spiritual spaces, we believe that the perspectives of the participants in this study offer some insight into the complexities of inclusion and exclusion, and the potential and challenges of the digital realm for fostering spiritual connection, growth and well-being in the lives of persons with disabilities. conclusion this article presented results from a study that investigated the experiences of persons with disabilities participating in an online bible study group hosted by a pentecostal christian church in cape town, south africa. the study found that the group promotes spiritual growth, provides a secure environment and uses technology to meet accessibility needs. however, societal barriers still present challenges to full participation and inclusion in the community of the larger church congregation. the digital realm offers only partial inclusion and may not adequately provide persons with disabilities with the sense that they are welcome and that they belong within the church community. this research illustrates the complexity surrounding the experiences of persons with disabilities in faith-based environments. the stories that participants have revealed highlight the need for a change in viewpoint inside the church community, one that stresses acceptance, support and empowerment, rather than only healing or normalising. church communities need to anticipate that persons with disabilities will form part of their congregations and make efforts to review their practices and programming with universal access and inclusive care in mind. here, care is understood not as a help or medical intervention, it should underpin a commitment to design environments and build relationships that remove participation barriers and promote equity (evans, hsu & boerma 2013). this is particularly needed as engagement in faith activities holds significant benefits for persons with disabilities, providing hope, purpose and a secure sense of identity. in the end, the demand for inclusion reflects the conviction that every person is formed in the image of god and is deserving of love and acceptance. universal inclusion complements the essential principles of christianity and should therefore not be seen as a purely legal requirement within church communities. acknowledgements this article is based on the author’s thesis entitled ‘a qualitative exploration of the lived experiences of people with disabilities participating in an online bible study group hosted by a christian pentecostal church in cape town, south africa’ towards the degree of masters in human rehabilitation in the department of global health, stellenbosch university, south africa, on 25 march 2025, with supervisor dr michelle botha. competing interests the author, m.b., serves as an editorial board member of this journal. m.b. has no other competing interests to declare. authors’ contributions t.o. conceptualised the research, conducted the research and co-authored the manuscript. m.b. supervised the research and co-authored the manuscript. all authors contributed to the study, discussed the results and approved the final version for submission and publication. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article, as no new data were 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identified obstacles encountered and recommendations conclusion acknowledgements references footnote about the author(s) surona j. visagie centre for rehabilitation studies, stellenbosch university, south africa rebecca matter school of public health and family medicine, university of cape town, south africa international program on disability, technology and rehabilitation, university of washington, united states george m. kayange southern africa federation of the disabled (safod), gaborone, botswana mussa chiwaula southern africa federation of the disabled (safod), gaborone, botswana mark harniss rehabilitation medicine, university of washington, united states gubela mji centre for rehabilitation studies, stellenbosch university, south africa elsje scheffler centre for rehabilitation studies, stellenbosch university, south africa citation visagie, s.j., matter, r., kayange, g.m., chiwaula, m., harniss, m., mji, g. & scheffler, e., 2018, ‘lessons from the pilot of a mobile application to map assistive technology suppliers in africa’, african journal of disability 7(0), a422. https://doi.org/10.4102/ajod.v7i0.422 case study lessons from the pilot of a mobile application to map assistive technology suppliers in africa surona j. visagie, rebecca matter, george m. kayange, mussa chiwaula, mark harniss, gubela mji, elsje scheffler received: 15 aug. 2017; accepted: 19 dec. 2017; published: 29 mar. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract a pilot project to develop and implement a mobile smartphone application (app) that tracks and maps assistive technology (at) availability in southern africa was launched in botswana in 2016. the app was developed and tested through an iterative process. the concept of the app (at-info-map) was well received by most stakeholders within the pilot country, and broader networks. several technical and logistical obstacles were encountered. these included high data costs; difficulty in accessing at information from the public healthcare sector, the largest supplier of at; and the high human resource demand of collecting and keeping up-to-date device-level information within a complex and fragmented supply sector that spans private, public and civil society entities. the challenges were dealt with by keeping the data burden low and eliminating product-level tracking. the app design was expanded to include disability services, contextually specific at categories and make navigation more intuitive. long-term sustainability strategies like generating funding through advertisements on the app or supplier usage fees must be explored. outreach and sensitisation programmes about both the app and at in general must be intensified. the project team must continually strengthen partnerships with private and public stakeholders to ensure ongoing project engagement. the lessons learnt might be of value to others who wish to embark on initiatives in at and/or implement apps in health or disability in southern africa and in low-resourced settings around the world. background the unmet need for assistive technology (at) in developing countries is around 85% and is growing because of the changing demographics of disease (harniss, raja & matter 2008; matter et al. 2017). in sub-saharan africa, critical issues for persons with disabilities1 are lack of information and knowledge on the availability of at products and services, lack of funds and a shortage of service providers. these challenges result in low acquisition rates of at (matter et al. 2017), which affect function and community integration negatively [borg, larsson & östergren 2011; world health organization (who) 2014]. the leadership of the southern african federation for the disabled (safod) determined a broad project concept – locating at suppliers in southern africa. this concept was crafted into a proposal to create a user-friendly mechanism to efficiently track and map at availability, so that those seeking at can easily locate what they need, and to illuminate the gaps in at availability. in december 2015, the project was selected as one of 29 grantees in the google impact challenge – disabilities (https://www.google.org/impactchallenge/disabilities/) and funded for a 3-year period (march 2016–april 2019). commcare (www.commcarehq.org/solutions/) based on the open data kit was selected as the data platform to map at availability because of its unique features designed for low-resourced settings such as offline use once installed. dimagi (https://www.dimagi.com/) led the scoping and design process, with guidance from at experts at the university of washington, usa, and stellenbosch university, south africa, to ensure a design both accessible to users with different disabilities and aligned with global at standards. safod, the primary implementing partner, which includes 10 national federations representing disability organisations (dpos) in member states, is based in botswana where the pilot phase of the project was rolled out. this case study describes the lessons learnt from the pilot phase, provides recommendations for scaling up of the at-info-map to other safod countries and might provide some guidance to others who wish to embark on similar projects in southern africa and other low-resourced settings. roll-out the project was officially launched by safod in gaborone on 19 april 2016, after a preliminary meeting at stellenbosch university in cape town (http://assistivetechmap.org/wp-content/uploads/2017/08/at-info-map_capetown_summary_final.pdf). presentations to introduce the project were followed by an open discussion about the project and at in general. key stakeholders involved in at provision including government, non-governmental organisations (ngos), dpos and private sector at suppliers were invited. the launch was followed by meetings with the stakeholders to further gather reactions to and feedback on the project. this space afforded the project leaders with valuable guidance on how to proceed. the launch, development process and roll-out continued throughout 2016 and into 2017 as shown in figure 1. figure 1: timeline of the launch, development process and pilot roll-out. during the scoping phase, the project team identified information gaps for each of the major stakeholder groups within the at sector and evaluated the likelihood of these groups to engage in the project. achieving the original use case of the application (app), that is, to provide end users of at with information about the location and availability of at products, showed low feasibility owing to challenges in engaging the public sector. given that the majority of end users obtained at through the public sector, involvement of relevant government ministries was required to gather at availability information. therefore, the use case was revised to target public, private and civil society intermediaries who were positioned to purchase directly from at suppliers and then provide at to end users. bridging the information gap between people/groups that are likely to purchase at and at suppliers was determined to be the necessary and feasible use case for the app. in the pilot phase, stakeholders could only obtain the app through safod trainings or outreach. thirty stakeholders were reached during the first round in april to july 2016, and 40 in november and december 2016. persons with sensory (hearing, vision and albinism), physical and intellectual and/or developmental impairments were included among stakeholders. the app testing process for both v1 and v2 was started by providing instructions for downloading the app on participants’ phones. participants would then login on their phone or on a demonstration phone offered by safod and begin navigating through different sections of the app. depending on the composition of stakeholder groups, instructions were provided on how to enter and save content (portal app) and/or how to view at suppliers and disability services records (consumer app). data collected from both at suppliers and disability service providers included contact information, map information (latitude and longitude) and fields that describe the type of at or services provided. the project team addressed and documented technical and content questions that emerged during the testing sessions, and asked for specific recommendations for improvements. all feedback was synthesised to inform subsequent app revisions. the taxonomy used in the app was based on iso 9999 (2016). the final plain-language categories were informed through an iterative process of testing and user feedback. eight of the twelve iso 9999 at classes with select subclasses were initially included. in response to feedback from dpos in botswana, two further subclasses, that is, skin and eye protection (important for people with albinism) and reproduction and sexuality were included. these two aspects reflect critical advocacy areas in southern africa that are often overlooked. user feedback further showed that the eight iso 9999 classes were not intuitive/user-friendly enough to constitute first-level categories for the app. however, the 60 subclasses were too many. thus, a plain language list of 18 categories was created by combining subclasses into broad functional groups as shown in table 1. the who essential assistive devices list of 50 items (who 2016) is included in these categories. table 1: the 18 plain-language categories as developed from iso 9999 classes and subclasses. benefits identified including persons with disabilities and other stakeholder groups in the design and testing process of the app was seen as positive by participants and safod. developing a mobile application with specific focus to benefit persons with disabilities, an often neglected minority (visagie & swartz 2017), was also hailed as empowering. persons with disabilities, service providers and representatives from ngos and dpos were enthusiastic about the app and indicated that they would use it and would raise further awareness on it among their networks. they felt that the app addressed a gap in their current knowledge and would assist them to identify at and suppliers in a quick and efficient manner. they enthused about the simplicity of the app and the location feature, which could assist them in determining the proximity of suppliers. they also mentioned that with the app they can order directly from suppliers and thus save the cost of distribution intermediaries. finally bringing together at stakeholders through the project has helped to shine light on access to at in botswana. obstacles encountered and recommendations the majority of persons with disabilities are not buying at directly from suppliers. they are connected to at through a private, public or civil society sector intermediary. persons with disabilities, who are often severely affected by unemployment and poverty (hanass-hancock et al. 2017), were also less likely to own or have access to smart phones and mobile data, which is costly in botswana. apart from data cost, some people could not download the app because they did not have enough space on their phones. the cost and availability of data may be the largest risk to overall project success and sustainability. betjeman, soghoian and foran (2013) warned against the challenges of using mobile applications in sub-saharan africa where communication technology is relatively undeveloped. that commcare can be accessed offline is a step in the right direction, but further solutions are needed. data cost will limit the usage and uptake among the most underserved regions and populations, where persons with disability might be most highly represented (hanass-hancock et al. 2017). in the final version of the app, at categories were reduced from 23 to 18, and all product photos and select filtering features were removed, in a bid to keep the data burden low. icons were well received and helped communicate the meaning of many categories. however, categories were occasionally perceived as broad and not intuitive. as an example, some participants were unsure what ‘pressure care’ referred to; and some thought ‘eating and drinking’ referred to eateries or restaurants. decreasing categories to keep the data burden low led to categories being broad. however, categories could also have been perceived as non-intuitive owing to insufficient familiarity with at. a general lack of awareness on different types of at and how at can benefit users was identified as a major challenge. this project can help raise awareness and increase knowledge through exposure. it exposes people to at through the scoping visits and training workshops, as the app is tested and rolled out, and through using the app. furthermore, outreach and training, as well as the development of educational resources (videos, factsheets) for the project website, is suggested to increase general awareness of at and its impact on function, participation and quality of life. while collecting updated product-level data was not feasible owing to data burden and human resource demands, both suppliers and consumers requested that this level of information is included. the proposed solution is to develop a web-based database, which is integrated with the app. in the web system, the taxonomy will be expanded by adding another level so that users can find suppliers that offer a desired product type (e.g. crutches), not just at category (e.g. mobility). more advanced search features, product photos and specifications as well as links to educational resources will also be included. central government representatives have expressed support for the project and are allowing employees to participate but were not willing to provide public sector at supply information for the app. public at provision systems are complex, involve multiple government departments, with many points of provision and supply channels that vary by type of at. as signatories of the uncrpd, the governments of southern african countries are required to provide persons with disabilities access to appropriate at and client-centred at service delivery. the app and the global cooperation on assistive technology (gate) initiative could assist the relevant ministries to achieve that requirement. a final challenge revolves around project sustainability and the long-term covering of operating costs. staff will be required to maintain the app and app-related activities. strategies for generating funding through the app such as advertisements or supplier usage fees must be explored. conclusion while not a complete solution, this app may assist in linking at users and suppliers in a more efficient manner. the initial plan of developing an app that can be used to track stock in real time was not feasible. however, the simple directory of at that was developed is of value to at users, buyers and suppliers and is easier to maintain and therefore more sustainable. the project and app might also assist in the development of a broader and deeper knowledge base on at in southern africa. financial sustainability is a challenge that should be focused on from the very start in planning projects of this nature. acknowledgements the authors thank google impact challenge for funding this project. competing interests g.m.k. and m.c. are working for safod in botswana. authors’ contributions s.j.v. was involved in the overall planning and monitoring of the project and drafted the paper. r.m. drafted the proposal, drove the implementation process and provided input into the paper. m.h., e.s. and m.c. assisted with development of terminology, and they along with g.m. and g.m.k. provided input into the proposal, implementation process and the paper. references betjeman, t.j., soghoian, s.e. & foran, m.p., 2013, ‘mhealth in sub-saharan africa’, international journal of telemedicine and applications 2013, article id 482324, 1–7. https://doi.org/10.1155/2013/482324epub borg, j., larsson, s. & östergren, p., 2011, ‘the right to assistive technology: for whom, for what, and by whom?’, disability & society 26(2), 151–167. https://doi.org/10.1080/09687599.2011.543862 hanass-hancock, j., nene, s., deghaye, n. & pillay, s., 2017, ‘“these are not luxuries, it is essential for access to life”: disability related out-of pocket costs as a driver of economic vulnerability in south africa’, african journal of disability 6, a280. https://doi.org/10.4102/ajod.v6i0.280 harniss, m., raja, m. & matter, r., 2015, ‘assistive technology access and service delivery in resource-limited environments’, disability and rehabilitation: assistive technology 10(4), 267–270. https://doi.org/10.3109/17483107.2015.1039607 iso 9999, 2016, assistive products for persons with disability – classification and terminology, reference number iso 9999:2016(e), 6th edn., geneva, switzerland. matter, r., harniss, m., oderud, t., borg, j. & eide, a.h., 2017, ‘assistive technology in resource-limited environments: a scoping review’, disability and rehabilitation: assistive technology 12(2), 105–114. https://doi.org/10.1080/17483107.2016.1188170 visagie, s. & swartz, l., 2017, ‘“there is nothing wrong with me”: disability invisibility in a rural south african town’, disability and rehabilitation, 1–12. https://doi.org/10.1080/09638288.2017.1313909 world health organization (who), 2014, concept note: opening the gate for assistive health technology: shifting the paradigm, viewed 10 august 2015, from http://www.who.int/phi/implementation/assistive_technology/concept_note.pdf world health organization (who), 2016, priority assistive devices product list, geneva, viewed 19 july 2017, from http://www.who.int footnote 1. in this paper, persons with disabilities include all those who might need at such as elderly people and people with various impairments. abstract introduction the policy landscape: rights of persons with disabilities literature review context and background theoretical orientation research methodology results and discussion factors contributing to access and participation concluding observations acknowledgements references footnotes about the author(s) roshanthni subrayen disability support unit, school of education, university of kwazulu-natal, durban, south africa rubby dhunpath teaching and learning office, university of kwazulu-natal, durban, south africa citation subrayen, r. & dhunpath, r., 2019, ‘a snapshot of the chalkboard writing experiences of bachelor of education students with visual disabilities in south africa’, african journal of disability 8(0), a523. https://doi.org/10.4102/ajod.v8i0.523 original research a snapshot of the chalkboard writing experiences of bachelor of education students with visual disabilities in south africa roshanthni subrayen, rubby dhunpath received: 05 apr. 2018; accepted: 07 feb. 2019; published: 24 july 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: south african higher education policy frameworks highlight renewed interest in equity, access and participation imperatives for students with disabilities (swds). however, students with visual disabilities continue to face barriers in their teaching practice school placements. objectives: this article aims, firstly, to provide early insights into the barriers experienced by students with visual disabilities in their teaching practice school placements in under-resourced schools in kwazulu-natal, south africa. secondly, it introduces learning communities and a teaching practice pre-placement booklet to enhance equity, access and participation in teaching practice school placements. method: this study adopted a qualitative methodology using semi-structured interviews to elicit data from two bachelor of education students with visual disabilities, who were part of a teaching practice learning community managed by the disability unit at the university. thematic analysis was used, using tinto’s learning community model which generated valuable evidence to argue for institutional commitment to achieve equity, access and participation for students with visual disabilities. results: through engagement with a teaching practice learning community and a teaching practice pre-placement booklet, two students with visual disabilities responded to and managed the chalkboard in ways that promoted teaching and learning in the classroom. these retention support trajectories provide evidence to support enhanced equity, access and participation. given the stigma associated with disability and the need for equity at policy level, higher education institutions should seriously consider systemic mechanisms for access, participation and success outcomes in the teaching practice school placements of students with visual disabilities. conclusion: barriers to participation signal the need for accessible teaching and learning strategies for use by students with visual disabilities in their teaching practice school placements. teaching practice assessors should be alerted to contextual differences in resourced and under-resourced school settings and the diverse ways in which swds navigate these differences. keywords: visual disabilities; teaching practice school placements; higher education; student retention; bachelor of education; teaching practice learning communities; stigma; chalkboard arrangements. introduction the united nations convention on the rights of persons with disabilities (uncrpd 2006) foregrounds the systemic discrimination experienced by people with disabilities and calls for equity, broadened access and participation1 in higher education (uncrpd 2006). this injunction is mirrored in south african higher education policy frameworks (republic of south africa 1997a, 2001, 2018) with regard to broadening access and participation for students with disabilities (swds). regrettably, these policy provisions do not resonate with the current experiences of individuals with disabilities. to explore this slippage, this article focuses on data derived from a qualitative research study with two bachelor of education students with visual disabilities, who were part of a teaching practice learning community managed by the disability unit at the university. the research focussed on their chalkboard experiences and how these influenced equity, access and participation as trainee teachers in their teaching practice school placements. we begin by scanning the policy terrain on inclusion of swds in higher education in the united kingdom (uk) and south africa, followed by a review of the literature on the practice learning experiences of swds in these two countries. thereafter, the context and background of this research study is documented. we move on to elucidate the theoretical orientation, which is informed by tinto’s (2003, 2004) learning community model for student retention and success. following an overview of the research methodology, the results, discussion and conclusions are presented. the policy landscape: rights of persons with disabilities foregrounding inclusion and the right to education for all, policy frameworks underscore equity and broadening access to enable the inclusion and participation of swds in higher education (republic of south africa 1997b, 2001, 2018; uncrpd 2006). this is increasingly advanced as a basic human right and a social justice concern. the earnestness of these imperatives is reflected in equity, access and participation being included in institutional performance indicators to support social change and transformation. however, despite these policy advances, swds continue to experience complexities and tensions in negotiating fair and inclusive higher education. it has been suggested that these emerge because of control, hegemony and exclusion of persons with disabilities by social institutions (terzi 2005). the uncrpd and the constitution of the republic of south africa (1996) recognise disability as a human rights and social justice concern, denouncing all forms of oppression, exclusion and discrimination arising from disability. the uncrpd’s (2006) assertion on higher education inclusion and participation for persons with disabilities provides for reform by stating in article 24 (e) that ‘effective individualised support measures are provided in environments that maximize academic and social development, consistent with the goal of inclusion’. in south africa, disability is considered as a system of discrimination requiring social redress and transformation through the imperatives of equity, access and participation in higher education (republic of south africa 1997b, 2001, 2018). furthermore, the integrated national disability strategy (1997c) and the sustainable development goals (2016) draw our attention to the need for equity and inclusion in higher education for persons with disabilities. a more recent south african policy pronouncement, the strategic policy framework on disability for the post-school education and training system (republic of south africa 2018), draws attention to the social inclusion of swds in higher education. this translates to the promise of universal design and curriculum accessibility; attention to violence, abuse and hiv and aids; inclusion of disability in higher education policies; access to sports, recreational and cultural activities; disability responsive retention and success outcomes and extensive disability sensitisation. this study aligns to and acknowledges the distinctiveness of the social model of disability. this relates to the removal of social, attitudinal and universal design barriers and the importance of the individual and collective agencies of persons with disabilities to inform the design of inclusive social arrangements (barnes 2007). literature review studies have documented the challenges experienced by swds in higher education in accessing resources designed for able-bodied students (gibson 2012; opini 2012). these studies found that a complex and problematic relationship exists between swds and access to such resources. our review of this literature found no international data on students with visual disabilities’ experiences of chalkboard access and participation. however, in south africa, subrayen’s (2018) study showed that the chalkboard produced complex and multi-dimensional power hierarchies, leading to the production of stigma. much rigorous research has been undertaken in the uk on the practice learning placements of swds. these studies highlight good practice models (ashcroft et al. 2008; botham & nicholson 2014; glazzard & dale 2015; griffiths 2012; griffiths, worth, sculliard & gilbert 2010), stereotyping and disempowerment (glazzard & dale 2015) and stigma and challenges arising from disability disclosure (botham & nicholson 2014). interestingly, the country’s equality act (2010) provides guidelines for the preparation and design of practice learning placements for swds, and studies suggest that such models enhance retention, access and participation. griffiths et al.’s (2010) case study of nursing swds argues for a comprehensive student-centric approach that supports collaboration with practice partners; disability disclosure; support systems; review of placement practices and institutional arrangements, all of which form the six-phase tripartite model. this model provides reflective learning, continuous assessment and evaluation suitable to individual student’s needs (griffiths et al. 2010). botham and nicholson’s (2014) modified action research study with physiotherapy swds corroborates griffith et al.’s (2010) findings on practice partner engagement and on-going communication for open and early disability disclosure to support a structured practice placement procedure for evaluating and assessing clinical practice placements. this good practice model is also supported in a discussion paper by ashcroft et al. (2008). these scholars assert that prior clinical training in simulated patient care laboratories for nursing swds improved clinical skills and enhanced readiness and confidence for clinical practice placements. furthermore, glazzard and dale (2015) and griffiths (2012) advocate for the use of specialised technology for trainee teachers with dyslexia. their findings show improved retention and success rates in the trainee teachers’ teaching practice school placements. as noted by glazzard and dale (2015), tutors trained in dyslexia and support plans for teaching practice reduced barriers in such placements. glazzard and dale (2015) and botham and nicholson (2014) agree that inequities and complexities exist in practice learning placements for swds in the uk. the results of glazzard and dale’s (2015) study show that trainee teachers with dyslexia experienced stereotyping, stigma and disempowerment by school mentors and tutors in their teaching practice school placements. this negatively influenced teaching and learning in the classroom context. another important finding was that swds delayed disability disclosure in singular or multiple practice learning placements for fear of discrimination leading to stigma (botham & nicholson 2014; stanley et al. 2011). hence, disability disclosure is fraught with tensions and complexities where swds have to consistently negotiate and re-negotiate decision-making related to the timing of disability disclosure (botham & nicholson 2014; stanley et al. 2011). however, despite this rigorous research on practice learning placements in the uk, these studies do not offer directions on strategies to enhance equity, access and participation for bachelor of education students with visual disabilities in their teaching practice school placements. in comparison to the uk, little progress has been made in south africa on the practice learning arrangements for swds in higher education. ndlovu and walton (2015) recently noted that there is a paucity of evidence to highlight the unique experiences of swds in their practice learning placements. this presents a challenge in critically understanding and analysing the practice learning experiences of swds in south african higher education. there is, thus, a need for a critical examination of the ways in which swds negotiate their teaching practice learning experiences in the school context. small-scale data sets suggest that south african swds are experiencing tensions in these placements (ndlovu & walton 2015; ntombela & subrayen 2013; subrayen 2011, 2018). van den heever’s (2017) study at a higher education institution in south africa highlights the clinical experiences of final year able-bodied nursing students. these students acquired psycho-social disabilities, such as continuous stress and anxiety, chronic physical and emotional fatigue and personal identity detachment, while in their clinical training with young traumatised children in hospitals. these acted as barriers to access and participation in these students’ clinical nursing practice placements (van den heever 2017). a qualitative study in kwazulu-natal found that academic staff’s lack of awareness of students with visual disabilities and unique chalkboard access trajectories led to the exclusion of a student with a visual disability from entering a bachelor of education programme (subrayen 2011). this constrained retention and success of students with visual disabilities, hence violating their freedom and agency (sen 1999) to do and be what they have ‘reason to value’ (p. 87). two other studies found that bachelor of education students with visual disabilities experienced constraints in their teaching practice school placements. ntombela and subrayen’s (2013) situational analysis concluded that blind students experienced barriers related to the lack of human support and specialised assistive technologies to navigate their teaching practice school placements. this impacted on their retention and success outcomes. the authors argued that these exclusions provide evidence to support the argument that students with visual disabilities experience barriers to chalkboard access. institutional commitment is, thus, required to consider visual disability as human diversity in the apportionment of accessible resources for teaching practice school placements. more recently, subrayen’s (2018) sociological analysis of the experiences of bachelor of education students with visual and physical disabilities found that these students experienced many inequities in their teaching practice school placements. complex and multiple power hierarchies lead to the production and reproduction of stigma, and a lack of freedom and agency to make decisions about teaching practice, environmental barriers in the teaching practice context and the chalkboard as a normative resource prevented the achievement of equity for eventual equality. as observed by terzi (2005), normative resources are designed by social institutions without accounting for the social realities of persons with disabilities. these resources serve to exclude persons with disabilities (terzi 2005) and constrain individuals’ human development and expansion of their capabilities (sen 1999). these south african studies highlight that despite the invocation of equity, access and participation imperatives in higher education policy frameworks (republic of south africa 1997b, 2001), swds continue to experience systemic institutional constraints relating to stigma, inadequate student funding, marginalisation and a lack of human support and specialised technological software (ndlovu & walton 2015; ntombela & subrayen 2013; subrayen 2018). however, subrayen’s (2018) study also demonstrated that learning communities (tinto 2003, 2004) for student engagement supported equity, access and participation in teaching practice placements. this section has demonstrated that, in both the uk and south africa, there is documented evidence on the constraints confronting swds in their practice learning placements. however, there remains a need for a deeper sociological understanding of the redress and transformative measures relating to the chalkboard experiences of students with visual disabilities. context and background the school of education at the university was the site for the research. the core teacher education curriculum requires trainee teachers to participate in a compulsory 16-week practice teaching experience in a school setting. this practical exposure is intended as a catalyst for nuanced and diversified school-based experiences to enable trainee teachers to become reflective practitioners. the school of education’s disability support unit’s primary mission is to ensure academic integration and support for swds. a student group programme undertaken by the unit involves group collaboration and sharing experiences of access and participation in teaching practice school placements. arising from these programmes, the lead author, in her capacity as the university’s disability coordinator at its school of education, developed a booklet entitled ‘management strategies for effective teaching practice placement for students with visual disabilities’. the booklet was formulated through the voices of swds on their teaching practice school placement experiences and is used as a critical pre-placement teaching practice tool. prior to embarking on his or her teaching practice school placement, a copy of this booklet is provided to each swd to guide their access, participation and retention in their placement. it is presented in the requisite print accessibility format such as large print in the required font size, braille or through voice synthesised software. the first part of the booklet details the challenges swds experience in their teaching practice school placement. these include personal barriers; the lack of reasonable accommodations at the placement schools; universal design barriers; attitudinal challenges emanating from learners and school staff; challenges arising from the disclosure or non-disclosure of disability and chalkboard inaccessibility. in the second part of the booklet, the ways in which swds navigate their teaching practice school placement to ensure retention and success are documented. intervention strategies related to social skills training; classroom management; learner engagement; specialised technological software and reworking traditional methods of the chalkboard; consultations with teaching practice assessors and school mentors and the advantages of disability disclosure are also documented. furthermore, the booklet provides advice from a professor who is blind on the requisite psychological processes for effective teaching and learning in the classroom. ideas such as collaborative and cooperative learning; sharing of knowledge; engagement with common themes; mutual connectedness and the co-construction of skills and competencies from tinto’s (2003, 2004) learning community model are used during the teaching practice school placement programmes. within-group collaboration, support and sharing of experiences and students’ engagement with the booklet are underpinned by tinto’s (2003, 2004) learning community model for student perseverance, retention and success, as explicated below. theoretical orientation tinto (2003, 2004) defines learning communities as a structure for beginning, undecided and academically developing students. we draw on tinto’s theoretical framework to emphasise the potential of appropriate support for retention and success for swds, particularly in the context of promoting collaborative and cooperative learning through linked courses, sharing and discussion of curriculum content. furthermore, he argues that learning communities are structured in ways that connect students with one another by organising common themes which gives meaning to their mutual connectedness. importantly, tinto (2003) posits that learning communities share three commonalities. the first is sharing knowledge in a focussed and coherent manner to establish deep levels of dialogue. the second commonality relates to shared knowing through the enrolment of the same students in the learning communities to facilitate their involvement and engagement, and co-construction of academic skills and knowledge to enhance deep levels of dialogue and the development of their cognitive abilities. the third commonality is shared responsibility, wherein there is a responsibility to every voice, hence enhancing collaboration and co-operation to improve and develop the entire learning community collectively. although tinto’s (2003, 2004) learning community model does not provide explanations on shared knowledge, shared knowing and collaborative and cooperative strategies as they relate to visual disabilities in the context of teaching practice school placements, his work highlights sustained academic engagement and integration. hence, tinto’s (2003, 2004) model has the potential to promote critical engagement in broadening access and participation for students with visual disabilities. this theoretical lens is valuable as it stimulates arguments for institutional commitment. however, tinto (2003) claims that the value of learning communities is based largely on anecdotal evidence, self-reports and assessments resulting in institutions working without any clear direction. the few available sociological studies that are positioned in tinto’s model tend to focus on able-bodied students in relation to socio-economic status and curriculum concerns. as will be demonstrated later, we use requisite evidence to argue that learning communities do promote and enhance retention and success for students with visual disabilities. research methodology the enquiry aimed to explore two key research questions: (1) what are the chalkboard experiences of bachelor of education students with visual disabilities in their teaching practice school placements? (2) how do these students negotiate their chalkboard access to enable teaching and learning in the classroom? a qualitative approach provided tools to deepen our understanding and interpretation of the unique experiences of students with visual disabilities in their teaching practice school placements at the university. data were obtained through qualitative research instruments, as the researchers were interested in capturing the participants’ authentic voices (denzin & lincoln 2005). non-probability sampling was used because the lead researcher is the disability coordinator at the said university and is the only staff member responsible for the support and management of all swds. this sampling strategy allowed for what bryman (2012) considers ease of ‘accessibility’ of the participants to the researcher (p. 201). the sample comprised two female third-year bachelor of education students with visual disabilities who acquired vision loss in early adulthood. one participant was 21 and the other was 23. for one of the participants, the dust from the chalkboard exacerbated her visual challenges, while with the other, her challenges commenced with mild hearing loss followed by visual challenges. this participant used spectacles as a blending-in strategy (goffman 1963) to conceal redness and swelling of the eyes. only 2 of the 11 students in the learning community had visual disabilities. as an equity measure, both participants required print and electronic material in font size 14. we selected the sample primarily because the participants were part of a teaching practice learning community, where swds receive support, guidance and skills for retention and success outcomes in their teaching practice school placements. data were generated through semi-structured interviews to allow for rich understanding of the chalkboard experiences of students with visual disabilities. prompts and probes were used to elicit relevant information and to extend conversations relevant to their experiences. this allowed the participants to narrate from their subjective positions rather than the researcher imposing meaning on their narration (chase 2005). the interviews lasted approximately 60 min each which was sufficient to generate the required data. to ensure the transferability of the findings, detailed rich and thick descriptions of the participants’ voices are presented in the form of direct quotes (denzin & lincoln 2005). both the participants consented to their interviews being audio recorded. data were transcribed verbatim from the original transcripts and audio recordings. themes were derived using thematic analysis, which was prepared according to the procedures used by braun and clarke (2006). this involves familiarising oneself with the data; generating codes; searching for themes through the codes; reviewing and refining the themes; defining and naming them; and, finally, production of the research report. the benefit of using this method of analysis is that interpretation of the themes is supported by the data (guest 2012). although this method allowed categories to emerge from the data (saldana 2009), it also runs the risk of missing nuanced data (guest 2012). ethical considerations prior to commencing this study, ethical consent was obtained from the relevant university (ethical clearance no.: hss/0108/014). in addition, gatekeeper’s permission was sought from the institution to undertake this study with students with visual disabilities. in noting the participant’s visual disabilities, consideration was accorded to print access in relation to reading the informed consent form and written feedback for member checking. the enquiry followed a rigorous process to uphold the trustworthiness and confidence of this investigation, including member checking, peer debriefing and thick descriptions of themes with direct quotations from the interviews (denzin & lincoln 2005). given the representation of third-year bachelor of education students with visual disabilities in the research site, as well as their representation in the general demographic of the student population, it must be emphasised that as authors, we make no claim to generalisability of the emerging findings, but we hope that useful indicators will be generated to influence the policy process for trainee teachers with visual disabilities. the purpose of this article is to highlight how structural constraints may be addressed pragmatically to enable student teachers with visual disabilities to experience equity of access, participation, inclusion and retention in their teaching practice school placements. results and discussion based on the analysis of the data generated, the following experiences emerged. barriers experienced in negotiating the chalkboard are considered, followed by the factors contributing to access. we use tinto’s theoretical framework as an analytical lens to demonstrate that in the absence of adequate institutional support, both by the university and host institution, students resorted to shared knowledge, shared knowing, collaborative and cooperative learning as offered by learning communities and a teaching practice pre-placement booklet, as a hedge against the cultivation of ablest identities. in this study, the constructs of shared knowledge, shared knowing, collaborative and cooperative learning (tinto 2003, 2004) stimulated claims for both barriers and factors contributing to access. barriers to chalkboard access despite the support provided in teaching practice learning communities, students with visual disabilities experienced barriers to chalkboard accessibility and participation. these related to inadequate or no reasonable accommodations in under-resourced schools and imposing ablist2 identities on trainee teachers with disabilities. inadequate or no reasonable accommodations in under-resourced schools in the absence of electricity, chalkboard access and participation were hindered because of visual disability intersecting with darkness in the classroom. furthermore, overhead projectors or data projectors could not be used as a substitute for the chalkboard. a further complication related to the lack of resource materials such as chart paper to design posters as a substitute for the chalkboard. this is highlighted in the voices below. ‘in under resourced schools i only use the chalkboard. there are no lights there. what do you do? it is not easy to teach [in under resourced schools]. there are no lights. you cannot use the overhead projector or the data projector…’ (thandi, 21 years old, visual challenges) ‘in under resourced schools …here you have to use the chalkboard and textbook. more often there is no lights so the class is dark this makes it difficult to write on the board… also under resourced schools do not have chart paper to do posters, this becomes a further challenge.’ (nellie, 23 years old, mild hearing loss and visual challenges) the participants reported that these challenges limited their capability to perform effectively as trainee teachers. this is echoed by glazzard and dale (2015), who argue for specialised resources to improve retention and success in teaching practice school placements for students with dyslexia. given that south african higher education policy frameworks commit to broadening access and participation (republic of south africa 1997b, 2001, 2018), why have swds not been considered for the provisioning of equitable arrangements? the united nations convention on the rights of persons with disabilities (crpd 2006) draws attention to article 2 on reasonable accommodation as a means of modifying or adjusting the environment to allow persons with disabilities to exercise their agency, human rights and individual freedoms on an equal basis with others. on the one hand, as a human rights and social justice concern, policy initiatives call for inclusion, equal participation and the right to education for all. on the other, the current reality is that the absence or lack of reasonable accommodations in under-resourced schools remains a barrier to broadening access and participation in higher education for swds. this form of higher education disablist gaze marginalises students with visual disabilities in their teaching practice school placements and prevents the transformation and social change articulated in south african higher education policy frameworks (republic of south africa 1997a, 1997b, 2001, 2018). creating an ablest identity for chalkboard access inappropriate provisioning in under-resourced schools imposes an ablist identity on swds. under the culture of ablism, discrimination against persons with disabilities is institutionalised, as they are assigned or denied skills and attributes. in order for the participants to negotiate the chalkboard, they downplayed their disability, to allow a sense of normalcy to prevail. they reported that they used large print prepared notes on a4 paper or spectacles to conceal their visual disability. this is highlighted in the following: ‘i do large print work sheets in preparation for class. learners do not know my preparation is in large print. i do all this on a4 paper to create normality.’ (nellie, 23 years old, mild hearing loss and visual challenges) ‘even if learners laugh about your chalkboard writing, still be confident, be firm and serious. don’t allow people to feel sorry for you. do not look for sympathy, try and fit in. use spectacles … so they think i am normal.’ (thandi, 21 years old, visual challenges) assuming the normalist gaze within the context of disability discourses creates (a form of) disablism, where, through cultural, social and institutional norms and values, dominant groups impose a false identity to which sdws must subscribe for acceptance and inclusion. goffman (1963) claims that the structuring of persons with disabilities by ablist social structures creates the belief that they do not fit and are termed deviant. hence, persons with disabilities have to blend in, to avoid stigma production (goffman 1963). the participants in this study assumed false identities to ensure acceptance, inclusion and belonging in the classroom. subrayen’s (2018) study also found that students with visual disabilities used blending-in strategies in their teaching practice school placements to reduce or avoid stigma production. these include, for example the use of spectacles to create an ablist identity. this finding resonates with the current study, as spectacles were used as a blending-in strategy to create a sense of normality. however, despite these barriers, through teaching practice learning community support, positive outcomes were achieved, as detailed below. factors contributing to access and participation reworking traditional methods of chalkboard access and participation through learning community support the following voices summarise how the participants negotiated their visual disabilities by reworking the chalkboard to enhance retention and success. this finding points to the opportunities and potential offered by learning communities (tinto 2003, 2004) to enhance retention and success in teaching practice. as a strategy to broaden access and inclusion, the participants reworked traditional ways of accessing the chalkboard. for instance, one participant made use of the ‘half-and-half’ method to engage with the chalkboard. one half was used to stick large print posters from which the lesson was taught, while the other was used to write learner responses. this participant reported the use of different coloured chalk to negotiate chalkboard access. in this way, diverse aspects of the lesson were taught to the learners and the participant could also map out the entire lesson from beginning to end. the other participant reported that for the purpose of interactive and collaborative classroom activity, the learners were asked to read her chalkboard writing. ‘i use the half and half method. i stick my prepared posters on the chalkboard and on the remaining part of the chalkboard i write the learners’ responses.’ (thandi, 21 years old, visual challenges) ‘using different coloured chalk helps me… yellow [chalk] helps me because it is bright… i use yellow chalk for subheadings…i use white chalk for the content. using different colour chalk for the content helps because it helps to know the beginning and the end of the unit. yellow and white helps with my organisational ability on the chalkboard.’ (thandi, 21 years old, visual challenges) ‘i write on the chalkboard and ask the learners to read. i tell the learners that i am here as a teacher so you can read for me so that you can understand what i wrote on the chalkboard.’ (nellie, 23 years old, mild hearing loss and visual challenges) tinto (1975) claims that the nature of academic integration determines students’ retention and success or drop out. although teaching practice learning communities are among the factors that contribute to retention and success of swds, the results of this study also suggest that such communities serve as a transition support structure. this allowed for the transportation of chalkboard access skills and strategies that included the participants’ visual disability skills. as social actors in teaching practice learning communities, students with visual disabilities bring with them specialised skills and knowledge about disability management and interventions required for retention and success in practice learning sites, which then become institutionalised in these sites. in learning community student group programmes, students typically share experiences relating to school visits; adaptation to the school environment; professional relationships and interventions to support teaching practice learning experiences. these engagements are used to orientate and socialise students before their teaching practice placements. this allows for inclusion, retention and success. the somewhat negative outlook for teacher trainees with visual disabilities presented earlier, particularly with regard to the use of visual teaching aids, is mitigated by shared knowing, shared knowledge and the collaborative and cooperative learning afforded by learning communities. finally, we also found the teaching practice pre-placement booklet (itself a product of the learning community) to be a useful resource to support transition, retention and success in teaching practice school placements, as elucidated below. teaching practice booklet for an effective teaching practice school placement amidst the generally pessimistic outlook for swds, the findings of this study highlight an effective strategy, particularly in the absence of substantive support structures for swds. the participants viewed the booklet on ‘management strategies for an effective teaching practice placement for students with visual disabilities’ as a retention tool that enabled them to use disability specific trajectories from the booklet in teaching practice school contexts. this enhanced their chalkboard access and participation, hence achieving successful chalkboard experiences, as revealed in the following extracts from the interviews with the research participants ‘… the booklet developed by the disability unit also helped and made me confident. this booklet made me ready for teaching practice in a way that if a challenge happens then i will know what to do. you manage your challenges because of support.’ (nellie, 23 years old, mild hearing loss and visual challenges) ‘i also used the booklet…it has all the strategies i need to use. i put all in place resulting in an effective teaching practice placement. this creates a positive learning experience. this makes me confident to manage my challenges.’ (thandi, 21 years old, visual challenges) these excerpts show that the booklet improved confidence, planning and preparedness and assertiveness, which promoted positive learning experiences. participants’ strategies contributed to a pedagogy of nuanced possibilities in their teaching practice school placements. other studies also highlight good practice measures to enhance the practice learning placements of swds, including the six-phase tripartite model developed by griffiths et al. (2010); structured pre-practice placement meetings between all practice partners and the student (ashcroft et al. 2008); and technological aids to support trainee teachers with dyslexia (glazzard & dale 2015). more recently, good practice measures were documented in subrayen’s (2018) study that supports tinto’s (2003, 2004) learning community model as an institutional framework to enhance equity, access and participation in teaching practice school placements of swds. this was found to be critical for the achievement of equality. concluding observations the study from which this article derives examined the chalkboard experiences of bachelor of education students with visual disabilities in their teaching practice school placements. several themes emerged which signalled overt and covert barriers to access and participation. aside from these barriers, this study also signals that reworking traditional methods of chalkboard access together with a pre-placement teaching practice booklet for swds enhanced the retention and success outcomes of trainee teachers with visual disabilities. the findings also demonstrate the value of transition and retention support trajectories such as teaching practice school placement learning communities. one of the more significant findings relates to flexible chalkboard teaching and learning designs such as large print posters, using the chalkboard and posters simultaneously, and using different coloured chalk. in addition to teaching practice school placement learning communities for students with visual disabilities, the teaching practice booklet served as a resource or toolkit to minimise barriers to chalkboard access and participation. taken together, the findings suggest that despite redesigning access and participation in relation to the chalkboard, complexities and challenges persist. this raises the need for policy review and for the higher education sector to consider systemic structures for retention and success. as tinto (2006–2007:5) argues, we need to look at ‘what works’ to enhance retention and success for diversified student cohorts. there must be a call for deeper structural connections with institutional climates and, through systemic transformation of higher education policy frameworks, there is a need to develop structured teaching practice learning communities for swds. although the data and analysis provide snapshots of the participants’ accounts of their experiences, these were not corroborated by observations or other methods and sources. what the participants say may or may not be very different from the way they actually ‘negotiate’ the chalkboard in the classroom, especially as trainee teachers. additional methods and sources would have enhanced the trustworthiness of the research. this is acknowledged as a limitation, and it is hoped that subsequent studies will embrace a wider range of research methods and instruments to corroborate the findings and analyses offered here. finally, higher education institutions have an obligation to ensure that teaching practice school placement assessors undergo formal and extended learning in relation to disability in higher education and non-traditional teaching and learning strategies and interventions used by swds in their teaching practice school placements. assessors are also advised to be cognisant of contextual differences in resourced and under-resourced schools and the diverse ways in which swds navigate these differences in their teaching practice school placements. acknowledgements competing interests the authors declare that they have no financial and or personal affiliation that may have inappropriately influenced them in writing this article. authors’ contributions r.s. made contributions to this article in respect of literature reviews, theoretical orientations to this study, research methodology, data collection, discussion and conclusions. r.d. made contributions to this article related to academic writing 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development program, 2016, sustainable development goals, viewed 03 january 2017, from http://www.undp.org/content/undp/en/home/sustainable-developmentalgoals.html. van den heever, a.e., 2017, ‘the thing with non-physical fatigue is that you can’t get rid of it with rest: psycho social nursing students reflected on their clinical placement’, journal of nursing & care 6(1), 1–6. footnotes 1. a substantive discussion of the constructs of equity, access and participation can be found at: http://unesdoc.unesco.org/images/0024/002482/248254e.pdf. 2. ablism refers to discrimination against people with disabilities who are considered inferior to the non-disabled. article information authors: mandi broodryk1 chrisma pretorius1 affiliations: 1department of psychology, stellenbosch university, south africa correspondence to: chrisma pretorius email: chrismapretorius@sun.ac.za postal address: private bag x1, department of psychology, stellenbosch university, stellenbosch 7600, south africa dates: received: 21 oct. 2014 accepted: 20 may 2015 published: 11 aug. 2015 how to cite this article: broodryk, m. & pretorius, c., 2015, ‘initial experiences of family caregivers of survivors of a traumatic brain injury’, african journal of disability 4(1), art. #165, 7 pages. http://dx.doi.org/10.4102/ajod.v4i1.165 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. initial experiences of family caregivers of survivors of a traumatic brain injury in this original research... open access • abstract • introduction and background • method    • research question    • research design    • participants    • data collection    • data analysis    • trustworthiness       • ethical considerations • results    • ‘shock’ at hearing the news    • negative experiences in hospital    • frustrating interactions with healthcare professionals • discussion • conclusion    • limitations and future directions • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: there seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (tbi). objective: to explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a tbi. methods: thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a tbi. results: family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s tbi, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. conclusion: the findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a tbi. practical and physical needs with regard to admission to and care in the hospital were also highlighted. this research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study. introduction and background top ↑ several studies have been conducted on family caregivers in the context of traumatic brain injuries (tbis) (arango-lasprilla et al. 2010; gan et al. 2010; livingston et al. 2010; phelan et al. 2011; vangel, rapport & hanks 2011). traumatic brain injuries (tbi) are regarded as a global public health problem, with research showing that tbis affect an estimated 10 million people worldwide every year (hyder et al. 2007). in the united states of america alone 1.7 million individuals sustain tbis each year (faul et al. 2010). an estimate of 30 000 people die due to a tbi annually and 125 000 people survive and live with disabilities as a result of tbi each year in india (sudarsanan et al. 2007). in south africa the national health laboratory service (2014) reported that 89 000 new cases of tbis are diagnosed per year. the high number of new cases of tbis each year in south africa and the problems within south africa’s healthcare system, such as shortages of hospital beds, lack of healthcare staff in the public sector, low quality of care, lack of resources for treatment or medication and high cost of institutional care (coetzee et al. 2013; department of health 2003; george et al. 2012), contribute to the need for relatives to take on the caregiving role. traditionally relatives that take on this role are generally more likely to be women (watson 2013), and therefore most studies on caregivers tend to focus on female caregivers (navaie-waliser, spriggs & feldman 2002). a tbi can be defined as: a nondegenerative, noncongenital insult to the brain from an external mechanical force, possibly leading to permanent or temporary impairment of cognitive, physical, and psychosocial functions, with an associated diminished or altered state of consciousness. (dawodu 2011:1) the severity of tbis is generally classified as either mild, moderate or severe, which is measured using the glasgow coma scale (gcs) (sbordone, saul & purisch 2007). a gcs score of 8 or below represents a severe tbi, a score of 9–12 indicates a moderate tbi, and a score of 13–15 indicates a mild tbi (sbordone et al. 2007). individuals who sustain a tbi can present with a variety of physiological (seizures, headaches, sleep disturbances, dizziness), psychological (anxiety, depression, personality changes, psychosis) and neurobehavioural problems (retrograde and anterograde amnesia, psychiatric disorders) (kreutzer et al. 2009; trevena & cameron 2011) that affect the relatives’ ability to function as they did before they sustained the tbi. as a result of the consequences of sustaining a tbi the relatives will most likely need intensive rehabilitation. rehabilitation often ranges in duration from months to a few years, and may sometimes last a lifetime (rotondi et al. 2007). this may suggest that the person with the tbi will often need continued care after being discharged from hospital (livingston et al. 2010), and this responsibility is then placed on relatives of these patients. caregivers with relatives who sustained a tbi have been found to face many challenges in the caregiving role (arango-lasprilla et al. 2010; gan et al. 2010; jumisko, lexell & söderberg 2007). challenges that have been reported by relatives of patients who sustained a tbi include the impact of the physiological, psychological and neurobehavioural consequences, financial strain, insufficient time for themselves, lack of information on the consequences of sustaining a tbi, lack of understanding or empathy from others, emotional distress, stress, anxiety, depression, shock, uncertainty and a lack of resources (braine 2011; coco et al. 2011; ergh et al. 2002; gan et al. 2010; jumisko et al. 2007; lefebvre, cloutier & levert 2008; man 2002; marsh et al. 2002; mcallister 2008; norup, siert & mortensen 2013; phelan et al. 2011; rotondi et al. 2007; verhaeghe, defloor & grypdonck 2005). most research on this topic includes the long-term challenges that caregivers of patients with tbi face. there is therefore a paucity of research on the initial experiences of caregivers after a relative has sustained a tbi. a study was conducted on the post-traumatic stress symptoms in relatives within the first weeks of their relative acquiring a tbi (pielmaier et al. 2011).however, this study did not investigate the subjective experiences of the family members within this time frame. to address this paucity of research the aim of this study was to explore the initial experiences of family caregivers after a relative sustained a tbi. method top ↑ research question the research question was formulated as follows: what are the challenges that family caregivers experience during the initial stages of recovery when a relative has sustained a tbi? research design an exploratory qualitative research design was used. a qualitative approach was chosen as the most appropriate methodology to explore the challenges of family caregivers of persons who have sustained a tbi, as it enabled the researcher to make an in-depth inquiry and to incorporate complex and rich insights from individuals’ personal experiences (coenen et al. 2011). participants a purposefully selected sample of participants who were caring for a relative that has sustained a tbi was selected for this study. according to crabtree and miller (1999) five to eight participants is usually sufficient to provide rich information for qualitative research. participants were only included in this study if the following two inclusion criteria were met: firstly, they had to be caregivers of a person with a tbi, meaning that a fairly large amount of their time is allocated to caring for the person who has sustained a tbi; and secondly, these caregivers had to be a relative of the person who sustained a tbi. a total of 12 participants was included in this study. as seen in table 1, all of these participants were female and their ages ranged between 47 and 69 (mean 57) years. more than half of the participants (58.3%) reported their home language as afrikaans. the relatives of the participants who had sustained the tbi were a daughter (58.3%), a son (25%), a husband (8.3%) or a granddaughter (8.3%). more than half of the participants were mixed-race individuals (58.3%) and the remaining participants were white. the duration of time since the relative had sustained the tbi ranged between 1 and 10 years (mean 4 years). it is important to note that participants were asked to recall their experiences of the beginning stage of their relative’s diagnosis with a tbi, and that they were not interviewed during the initial stages of tbi recovery. table 1: participant characteristics. data collection data were collected at the western cape rehabilitation centre (wcrc) at lentegeur psychiatric hospital in the western cape, south africa. potential participants were identified by the clinical psychologist from her contact with tbi patients’ relatives. they were initially contacted by the clinical psychologist from the institution and informed about this study. they were invited to take part in the study and were told that the aim of the study is to explore their initial experiences when their relative sustained a tbi. meetings were arranged with participants who indicated that they were interested in participating in the study. individual semi-structured interviews with 12 female caregivers were conducted; data collection was discontinued after 12 interviews, when data saturation was reached (bowen 2008). more than half of the interviews (58.3%) were conducted at the wcrc when participants brought their relatives for check-ups or visited them in hospital, which ensured that they did not need to make additional plans for transportation. the clinical psychologist at the wcrc assisted with providing rooms to ensure that the interviews could be conducted privately in the hospital. the remaining participants were interviewed at their homes. the interviews were voice recorded for transcription purposes, with the permission of the participants. data analysis thematic analysis was used to analyse the data. this involved the interpretation of data through identification, analysis and reporting of themes or patterns within the data set (braun & clarke 2006). the guidelines provided by braun and clarke (2006) were used by the primary researcher. first the data were transcribed whilst the primary researcher familiarised herself with them. notes were made whilst listening to the interviews to make the coding process easier. codes were then identified within the data set and the search for themes began. themes and codes were reviewed and refined to ensure that nothing was left out. the software program atlas.ti was used to help with the data analysis process (atlas.ti, 7.1.3). this software was helpful in the identification of codes and translating these codes into specific themes. the last process included defining and naming of themes and subthemes. a report was written to explain and discuss the themes further and the relation between them (braun & clarke 2006). trustworthiness peer examination (krefting 1991) was implemented in this study and was pursued by discussing emergent findings at regular intervals with knowledgeable colleagues. this stimulated exploration and consideration of additional explanations and perspectives at different stages of data collection and analysis. the primary researcher used this method by discussing and comparing ideas, methods and findings with the project leader throughout the research process. reflexivity was also implemented in this study, and necessitates carefully reflecting on the phenomenon which is being studied and also ensuring that the researcher’s own behaviour and ideologies do not affect the study (forman et al. 2008; sharts-hopko 2002), which might have an impact on development of an accurate emic viewpoint. the primary researcher enhanced reflexivity by keeping a journal throughout the process and reflecting on it with the project leader. emergent findings were also discussed on a regular basis with the project leader, who has extensive knowledge of tbi and experience of qualitative research. ethical considerations ethical approval to conduct this study was obtained from the health research ethics committee at stellenbosch university (ethics reference number s12/06/155). informed consent was also obtained from each participant before data collection proceeded. it was explained to each participant that their participation was completely voluntary and that they could withdraw at any time without any negative consequences. results top ↑ three main themes that relate to the experiences of caregivers during the initial stages of their relative’s recovery emerged through data analysis. these themes were: (1) ‘shock’ at hearing the news; (2) negative experiences in hospital; and (3) frustrating interactions with healthcare professionals. all the participants reported that the accident that caused their relative to sustain a tbi was a traumatic experience for them. nine participants reported that their relative’s tbi was caused by a motor vehicle accident; this included relatives as passengers in a motor vehicle or as a pedestrian crossing the road. three participants reported that their relative sustained a tbi after falling; one relative fell from a moving train, one fell during a fire and another fell whilst working. names in the participants’ extracts have been replaced with pseudonyms throughout, and coding has been used, e.g. p8 refers to participant number 8. ‘shock’ at hearing the news most of the participants (90%) received the news of their relative’s accident either from family, friends or healthcare professionals who contacted them telephonically. this news was unexpected and involved very vague descriptions of what had happened to their relative and how serious their injuries were. one participant said she received a phone call from her son about her other son’s accident: ‘my son phoned and said, “mommy, brandon was in an accident. we don’t know how bad it is yet. i will phone you back’” (p8). another participant received text messages from several people during a meeting with a colleague, which stated that they were urgently trying to get hold of her. she phoned her one friend back: ‘so i phoned and she’s screaming and they said, “come”. i went to the accident scene’ (p10). the sudden nature of hearing the news of a relative who was in a serious accident left most of the participants shocked. the experience of the participants is illustrated by the following: ’see that very day of the accident was, like i said, very traumatic … so yes, that to me was the most traumatic experience of my whole life. i’ve never been in a situation like that.’ (p4) negative experiences in hospital participants reported a number of challenges relating to their experiences at hospital when they visited their relative who had sustained a tbi. challenges included seeing their relative in the hospital after the accident, a lack of hospital beds and the type of care received in public hospitals. all of the family caregivers reported that their relative was in a coma after the accident occurred. they reported that it was distressing to see their relative in the hospital after the accident. one of the participants described her experience as follows: ’i was in shock, because it was just tubes and stuff‘ (p5). another participant shared this experience: ’my son looked like a dead person and all the machines on him. it gave me a fright when i got to the hospital, to see him lying there like that‘. (p9) several participants (40%) reported that there was a lack of open hospital beds and their relative had to be transferred to another hospital or rehabilitation centre. the experience of helplessness is evident in the following account by participant 12: ’for some reason, the hospital transferred my husband to another hospital and there wasn’t even a bed for him. i had to take him home that night in his condition.’ participant 5 decided to check for herself if there was in fact an open hospital bed for her son after being told by the doctor that he was being transferred. this participant reported that when she got there she was told the following: ’they told me there was no bed for him, there was no opening for my son‘ (p5). several participants (60%) also reported experiencing disappointment in the type of care their relative received in the hospital. one participant described her anger and frustration as follows: ’at that stage i didn’t even want to talk to them. i was very upset with them. and i am angry because his bum was burning, you get there and you tell the nurses that he pooped and then you wait and wait, you know. and then his bum was burning, so i was very angry and his genitals also burned … i told them i would take better care of him, you know’. (p5) similarly, another participant reported: ’she was not bathed in hospital, and when i bathed her at home she felt better‘ (p1). participants seem to have experienced frustration and hopelessness regarding the perceived neglect their relatives experienced in the hospital. frustrating interactions with healthcare professionals the caregivers described their initial experiences with the healthcare professionals as predominantly negative. the following extract summarises the experiences of most (80%) of the participants: ‘the biggest problem with our experience is that the medical profession do not listen… i was called neurotic, and she was called a drama queen’ (p2). another participant reported that her daughter was discharged from the hospital five days following her accident after sustaining a severe tbi: ‘the final words of the neurosurgeon to me were ‘’take her home, she’ll be absolutely fine’’’ (p7). several participants (70%) reported that a lack of interest, support and empathy from healthcare professionals in the hospital contributed to their challenging experiences. the experiences of participants 6 and 7 emphasise the need expressed by many of the participants: ‘when we were at the hospital, to have somebody possibly who could say ‘’you know, this is my field and i’m here for you if you need me. here’s my card, contact me’’’. (p6) ‘it would have taken a lot less of a toll on me if i had some back-up and not necessarily even just somebody to talk to, somebody to say ‘’you know what, it’s ok. this is the next step in the process you know’’’. (p7) the participants clearly expressed a great need for guidance from the healthcare professionals about what to expect and about the recovery process. discussion top ↑ several studies have found that caring for an individual who has sustained a tbi involves many challenges (arango-lasprilla et al. 2010; ergh et al. 2002; gan et al. 2010; jumisko et al. 2007; lefebvre et al. 2008). most studies on this topic focus on caregiving experiences from six months to several years post–injury. there have only been a few studies conducted on the initial experiences and challenges that family caregivers faced in the caregiving role. the research that is available regarding the initial stages of recovery and family caregivers’ experiences mainly include psychometric assessments of experiences and caregiver burden during this time. there is a paucity of research that focuses on caregivers’ subjective experiences in order to gain better insight into their needs and challenges during this time. it was therefore the aim of this study to examine the challenges that family caregivers face during the period during the initial stages of recovery, when a relative has sustained a tbi. it should be noted that only female family caregivers participated in this study, which is no surprise due to women in general being more likely to take on the caregiving role (watson 2013). the initial shock that accompanied hearing the news about the tbi of a relative was identified as a significant challenge for family caregivers. a tbi always occurs unexpectedly and suddenly (coco et al. 2011). it is therefore not surprising that upon hearing the news about their relatives’ accident, family caregivers reported experiencing feelings of shock, which is commonly reported immediately after exposure to a traumatic event (american psychological association 2014). furthermore, admission to the intensive care unit (icu) and specifically coma produce strong emotions in relatives such as shock, denial, anger, despair, guilt, devastation and fear (verhaeghe et al. 2005). all of the family caregivers that participated in this study reported that their relative was in a coma after the accident occurred. seeing their relative in a coma could also have contributed to the feelings of shock, distress and devastation that they experienced. it is possible that the experiences of the caregivers can be described as a kind of ‘ambiguous loss’ as defined by boss (boss 2007; boss & couden 2002). according to boss ambiguous loss has two dimensions: (1) a loss that relates to the physical absence but psychological presence of the relative; and (2) a loss that refers to the psychological absence but physical presence of the relative (boss 2007; boss & couden 2002). the shock of hearing that a relative has suffered a tbi is an example of the second type of ambiguous loss, as the person is not dead but there is no certainty that they will ever be the same again. according to boss and couden (2002): when people are unable to obtain clarity about the status of a family member, they are often immobilized: decisions are put on hold; roles remain unclear; relationship boundaries are confusing; celebrations and rituals are cancelled. (p. 1352) healthcare professionals in particular should therefore be aware of the possible impact that ambiguous loss can have on family caregivers during the initial stages of tbi recovery, because their relative is often in a coma and the progress and outcome of their condition is often very uncertain. this can be an interesting avenue to be investigated more closely in future research. these speculations suggest that there is a need for support and interventions that focus on the psychological needs of the caregivers during the early stages of recovery for relatives of survivors of tbis (norup et al. 2013). the experiences of caregivers with the hospital in general are reported to be negative. the experiences of family caregivers with healthcare providers in particular were identified as a major challenge during the initial hospital admission of their relative. apart from the physical needs of their relatives that were not addressed (such as the availability of a hospital bed and taking care of the personal hygiene of their relative), family caregivers experienced healthcare professionals as lacking interest, support and empathy during this time. similar to the findings of this study, jumisko et al. (2007) reported that healthcare professionals often pay insufficient attention to family caregivers’ needs. there could be several reasons why healthcare professionals often do not pay sufficient attention to relatives of these patients. it might be that south africa’s shortage of healthcare staff and therefore an increased workload makes it difficult for staff to attend to everybody’s needs (george et al. 2012). dissatisfactory working conditions and low quality of care could be another reason (coetzee et al. 2013). this topic could be researched further in future studies. whether in the form of providing information or guidance about what to expect or in the form of support to deal with their experiences of shock and trauma, family caregivers have a psychological need for support from healthcare professionals. according to coco et al. (2011) it is common for relatives of survivors of a tbi to long for information from healthcare professionals. prior research on relatives’ experiences with healthcare professionals in the icu in general suggests that the need for accurate and comprehensible information is very important to relatives visiting their relatives in the icu (verhaeghe et al. 2005). nurses and doctors often fail to appreciate the needs of relatives visiting their family in the icu (verhaeghe et al. 2005). it was also reported that nurses seem to underestimate their own role in satisfying the needs of relatives concerning the need for information (verhaeghe et al. 2005). conclusion top ↑ the findings of this study highlight the challenging experiences that family caregivers of a relative who has sustained a tbi endure from the outset and emphasise the need for support from the very beginning stages of recovery. no prior studies have investigated and reported on the early experiences of family caregivers and the challenges associated with hearing the news about their relative’s accident, diagnosis of tbi and negative experiences related to seeing their relative in the hospital. the paucity of research relating to these initial experiences might be due to the perception that family caregivers only take on the caregiving role at a later stage, when the relative with the tbi is discharged from the hospital. in this study caregivers seem to describe their experiences as filled with shock when they first heard the news about the accident, followed by negative experiences in hospital and frustrating interactions with healthcare professionals. interventions focusing on the provision of information and psycho-education, especially from healthcare professionals, could be beneficial to family caregivers in the initial stages of tbi recovery, as family caregivers become empowered when they gain more knowledge about their relatives’ condition (man 2002). an increased awareness from healthcare professionals about the possible impact of ambiguous loss on the family caregivers could also contribute positively to the caregiving experience. in conclusion, this study created a picture of the challenging experiences of caregivers during the initial stages of recovery of a relative who sustained a tbi. this research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to the improvement of the services provided by the healthcare system, based on the experiences of the caregivers who participated in this study. limitations and future directions although participants reported their subjective experiences of the acute phase of tbi recovery, for most it had been more than two years post-injury. time that has passed could affect their ability to recall their experiences accurately, and therefore it could be beneficial to conduct future qualitative research during the initial stages rather than interviewing participants about it years thereafter. the role of healthcare professionals not only with regard to providing guidance, empathy and information to the caregivers, but also with regard to physical care (i.e. looking after the personal hygiene of their relative) was emphasised. it seems as if the caregivers view the relationship between themselves and the healthcare professionals who are involved in the treatment of their relative who sustained a tbi as very important. it was, however, evident from the findings of this study that the caregivers are generally not satisfied with the quality of the interaction between the healthcare professionals, themselves and their relatives. it might be worthwhile to explore the experiences of healthcare professionals from their perspective, in order not only to compare experiences but also to attempt to address the challenges that caregivers experience. acknowledgements top ↑ the financial assistance of the national research foundation (nrf) towards this research is hereby acknowledged. opinions expressed and conclusions arrived at are those of the authors and are not necessarily to be attributed to the nrf. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions m.b. 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in the caregiving experience’, master’s thesis, middle tennessee state university, tennessee. abstract introduction pain in cerebral palsy pain management intervention strategies in south african school settings state of the evidence of interventions for children with cerebral palsy aim research methods and design setting participants data collection data analysis results and discussion current intervention options additional resources perceived as missing action or reaction approaches limitations conclusion acknowledgements references appendix 1 about the author(s) ensa johnson centre for augmentative and alternative communication, faculty of humanities, university of pretoria, pretoria, south africa stefan nilsson children, health, intervention, learning and development (child), jönköping university, jönköping, sweden institute of health and care sciences, university of gothenburg, gothenburg, sweden margareta adolfsson centre for augmentative and alternative communication, faculty of humanities, university of pretoria, pretoria, south africa school of education and communication, jönköping university, jönköping, sweden swedish institute of disability research, jönköping university, jönköping, sweden citation johnson, e., nilsson, s. & adolfsson, m., 2019, ‘how pain management for children with cerebral palsy in south african schools complies with up-to-date knowledge’, african journal of disability 8(0), a575. https://doi.org/10.4102/ajod.v8i0.575 original research how pain management for children with cerebral palsy in south african schools complies with up-to-date knowledge ensa johnson, stefan nilsson, margareta adolfsson received: 19 sept. 2018; accepted: 19 sept. 2019; published: 22 nov. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: pain in children with cerebral palsy (cp) has its sources in musculoskeletal problems that can influence learning in a school setting. best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. therefore, staff’s perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions. objectives: this study investigated how pain management intervention for children with cp in south african schools complied with international scientific knowledge about evidence-based interventions. the intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers). method: five focus groups were conducted with staff members at five schools for children with special educational needs in south africa. manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection. results: most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered. conclusion: a discrepancy between published evidence and clinical practice for pain management in children with cp in south african school settings was noted. suggestions for improved early intervention to identify children’s hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in south african children with cp. keywords: evidence-based practice; intervention; clinicians; children with cerebral palsy; pain management. introduction for children with disability, it is essential to provide current and evidence-based interventions to ensure best treatment. professionals may find it difficult to keep up to date with the latest developments in cerebral palsy (cp) intervention because of the substantial increase of systematic reviews published on cp intervention in the last decade (anttila et al. 2008; donald et al. 2014; novak et al. 2013; reedman, boyd & sakzewski 2017; thomason & graham 2014; wiart, darrah & kembhavi 2008). novak and her australian colleagues reported on the state of evidence for interventions to specifically support children with cp (novak 2014; novak et al. 2013). even though the results of novak’s comprehensive systematic review were questioned by some australian experts as these experts were of the opinion that the majority of the studies included in the review seemed to be sponsored by industry (thomason & graham 2014), it is important to consider effective evidence-based cp interventions apart from surgery. in school settings, pain management could contribute to children with cp’s optimal learning opportunities and participation in classroom activities. this study, which is part of a larger project that aims to facilitate discussions about best practices (adolfsson, johnson & nilsson 2018; johnson, nilsson & adolfsson 2015; nilsson, johnson & adolfsson 2016), explores how professionals working in south african schools for children with special educational needs perceive pain management intervention for children with cp, and how their ideas about interventions comply with knowledge about evidence-based interventions as reported by novak et al. (2013). pain in cerebral palsy cerebral palsy includes a group of permanent disorders of the development of movement and posture (rosenbaum, paneth & leviton 2007) that could limit persons with cp to participate in activities of daily living (such as eating, sleeping and walking), physical activities (such as gross and fine motor activities), communication, learning and social engagement (breau 2011; johnson et al. 2015; lauruschkus et al. 2017). in addition to individual factors, environmental factors may further impact the independence of a child living with cp, such as physical accessibility, lack of assistive materials or support networks (novak et al. 2013). the focus of this article will be on the classification of chronic nociceptive musculoskeletal pain according to the international classification of diseases 11th revision (icd-11; world health organization 2019). chronic nociceptive musculoskeletal pain is often under-recognised even though it is the most common comorbidity in children with cp (novak 2014; westbom, rimstedt & nordmark 2017). causes of pain may be multi-factorial and could be attributed to spasticity (occurring in 75% of children with cp), contractures (in 80% of children with cp) and/or inability to walk (in 33% of children with cp) (novak 2014). children with spasticity are largely at risk of contractures. contractures may lead to hip displacement and further progress into painful hip dislocation. hip dislocation means that the femoral head is completely displaced laterally out of the acetabulum (hägglund et al. 2016). displacement and/or dislocation of the hip is a major hindrance for children with cp. it is present in one out of three children with cp, manifesting itself from 2 to 3 years of age (huser, mo & hosseinzadeh 2018; novak et al. 2013). children with bilateral involvement who cannot walk have the highest risk of hip displacement or dislocation. in severe cases, a windswept syndrome may occur, sometimes combined with scoliosis (hägglund et al. 2016). the windswept hip deformity usually starts from the lower extremities with abduction and external rotation of one hip, with the opposite hip in adduction and internal rotation (hägglund et al. 2016). windswept syndrome is difficult to treat and could affect a child’s ability to stand or make sitting and any lying down uncomfortable. pain management research in recent years has proven that prevention approaches could manage a child’s pain and other comorbidities, such as hip displacement, epilepsy or sleep disorders, as well as lessen the development of contractures that could worsen the child’s health outcome (donald et al. 2014; hägglund et al. 2014). one means of prevention is to systematically follow-up the health status of children with cp, with a focus on the hip displacement and muscle contractures. systematic hip surveillances have been created by orthopaedic surgeons in collaboration with therapists and used successfully in, for example, nordic countries, scotland and australia (hägglund et al. 2014; wynter et al. 2014). however, no such systematic management process or preventive pharmacological treatment is available in south africa (donald et al. 2014; nilsson et al. 2016). intervention strategies in south african school settings in recent studies, professionals (teachers and therapists) working with children with cp in school settings in south africa and sweden were asked about the intervention strategies they used to manage the children’s recurrent pain in school settings (adolfsson et al. 2018; johnson et al. 2015; nilsson et al. 2016). the professionals in the said studies reported on a variety of intervention strategies. subsequently, action-and-reaction approaches followed by healthcare professionals during pain management were identified (adolfsson et al. 2018). action refers to strategies professionals use to prevent pain, while reaction refers to professionals’ strategies to intervene when a child is already experiencing pain. a difference was noted between strategies employed by south african and swedish professionals, as a reaction approach was more commonly used in south africa (adolfsson et al. 2018). reasons for this finding could be that the swedish health professionals (who are typically consultants in school settings) had access to interventions to prevent children’s pain. such interventions are a systematic follow-up surveillance programme for children with cp – also referred to as the cerebral palsy follow-up programme (cpup) (degerstedt, wiklund & enberg 2017), as well as pharmacological pain management strategies, for example, botulinum toxin (bont) and baclofen intended for the reduction of spasticity and recurrent pain (hägglund et al. 2014). in contrast, in south africa, pain management strategies are based on traditional analgesics, that is, paracetamol and non-steroidal anti-inflammatory agents. these drugs are mostly used for acute pain (wren et al. 2019). in the south african schools where the study was conducted, teachers or nurses sometimes only offered children a glass of water as an alternative to pain medication (adolfsson et al. 2018; nilsson et al. 2016). possible explanations for strategies used by south africa professionals working in school settings are (1) legislation stipulating that only doctors can prescribe pharmacological treatment, (2) caregivers (e.g. participants in the said study) avoiding analgesics because of potential side effects, (3) medical doctors and orthopaedic surgeons who are only available outside school settings and (4) patients (e.g. children with cp) who have to wait very long periods to get appointments with specialists in public hospitals (nilsson et al. 2016). in comparison with swedish healthcare professionals, the school-based south african health professionals were able to provide ‘hands-on’ or immediate pain management when a child experienced pain. these action–reaction approach differences may also be the reason why there is a higher incidence of children with severely affected cp (gross motor function classification system [gmfcs] levels iv and v) reported in africa compared to those in european countries (such as sweden) and north america (donald et al. 2014, 2015). nevertheless, one previous study in this project (adolfsson et al. 2018) found that the south african participants valued other action interventions implemented globally to support the well-being of children with cp. they suggested additional resources needed to secure a satisfactory pain management intervention for these children. state of the evidence of interventions for children with cerebral palsy a comprehensive systematic meta-review was conducted by novak et al. (2013) to obtain current knowledge about the best available published intervention evidence for children with cp. data in the current study have been sorted and analysed based on the results and recommendations by novak (2014) and novak et al. (2013). interventions by outcome novak et al. (2013) reported intervention options for 10 categories of outcomes. only three of the categories that focused on pain management were considered relevant for the current study (1) spasticity management, (2) contracture management and (3) improved motor activities and function (see appendix 1). the other seven categories mentioned by novak et al. (2013) that were not within the scope of this manuscript included mealtime management, improved muscle strength, self-care, communication, behaviour and social skills, parent coping and bone density. evidence of interventions evidence of a variety of interventions was reported in the meta-review by novak et al. (2013). however, all intervention options did not necessarily focus on pain management. for example, constraint-induced movement therapy (cimt), bimanual training and occupational training following bont aim to improve functioning in the upper limbs rather than to reduce pain. the effectiveness of interventions was based on the framework of grading of recommendations assessment, development and evaluation (grade). grading of recommendations assessment, development and evaluation is developed to assess efficiency and formulate recommendations along a four-part continuum: s+. strong evidence for (‘do it’) w+. conditional for (‘probably do it’) w-. conditional against (‘probably don’t do it’) s-. strong evidence against (‘don’t do it’). table 1 explains the levels of evidence for intervention options relevant for pain management related to the three selected categories of outcomes from novak et al. (2013). for a more detailed explanation of these interventions, refer to appendix 1. table 1: levels of evidence for a sample of pain management intervention options related to the three categories of expected outcomes from novak et al. (2013). from table 1, it is clear that interventions such as neurodevelopmental therapy (ndt), casting or hip bracing to reduce spasticity do not have sufficient levels of evidence (wand s-) to prove them to be beneficial interventions to treat pain in children with cp (novak et al. 2013) as some healthcare professionals tend to believe (nilsson et al. 2016). it is further important to mention that according to novak et al.’s (2013) level of evidence, lower limb casting has s+ evidence for contracture management but wfor spasticity management – it is this kind of discrepancy that makes it difficult for healthcare professionals to discern treatment choices. therefore, it is important for researchers and healthcare professionals to determine if the current intervention practices used are evidence based and could, in fact, support pain management in children with cp. aim this study focused on pain management for children with cp in south african schools for children with special educational needs. the aim was to investigate how interventions that the professionals reported as beneficial for the child’s pain management complied with published international evidence-based interventions for children with cp, as reported by novak et al. (2013) at the time of data collection. another aim was to reflect on the participants’ perceptions about interventions or resources perceived missing to obtain and secure a satisfactory pain management strategy for children with cp. the intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers). research methods and design the study followed a descriptive with a directed, qualitative approach (hsieh & shannon 2005). using a combination of manifest and latent content analyses (graneheim & lundman 2004), professional statements from focus groups were analysed and reflected against published interventions for cp reported as effective by novak et al. (2013, 2014). the study is limited to pain management in children with cp even though the larger project, of which this study is a part, addressed pain assessment and pain management (adolfsson et al. 2018; johnson et al. 2015; nilsson et al. 2016). ethics approval was obtained from the research ethics committee of the university (gw20140201hs) and permission was granted from the gauteng department of education (d2014/226), south africa. setting principals from five public schools for children with special educational needs which accommodate children with cp in the gauteng area of south africa gave permission for focus groups to be conducted with staff at their schools in february 2014. the school principals (or a designated person appointed by the principal) completed a short questionnaire to provide the investigators with detailed information on the school, for example, the ages of the children accommodated in the school, the number of children in the school, the number of children with cp in the school as well as whether the school has a hostel facility (see table 2). the participating schools accommodated children with various types of disabilities, including cp. three of the five schools were boarding schools where children from rural areas were accommodated in hostels. as the children from rural areas had to attend a boarding school, they typically start schooling at the age of seven. it was reported by some of the participants that these children received limited to no early intervention (ei) services, resulting in hip displacement or dislocations and chronic nociceptive musculoskeletal pain already present. table 2: background information of schools included in the study. participants upon consent, 38 staff members from the five schools participated in five separate focus groups. criteria for inclusion were follows: any staff member (e.g. teachers, therapists, psychologists, social workers and personal assistants) who worked at the five schools with children with cp (see table 3). all participants were women except for one who was the sibling and personal assistant of a child with severe cp. the age range of the participants was 22–64 years, with an average age of 44.4 years. in total, 76% of the 11 teacher participants had at least 4 years of university education with an average of 11.8 years experience in working with children with cp, attesting to their knowledge of this condition. the 26 participating clinicians represented six professions: nursing (n = 5), occupational therapy (ot; n = 8), physiotherapy (pt; n = 6), psychology (n = 1), social work (n = 1) and speech-language therapy (n = 5). therapists worked in therapy rooms and school classrooms with the children. table 3: background information of the focus group participants at each school. data collection the five focus group interview sessions included two identically applied parts, focusing on pain assessment and pain management, respectively. in the beginning of each part, one main question was presented, followed by three supporting sub-questions (table 4). piloted interview guides in english directed the introduction of the topic and the performance of the focus groups. three researchers, of whom two were swedish and one south african, conducted the focus group interviews that lasted between 70 and 110 min per session. the third investigator (a physiotherapist [pt] having experience with children with cp as well as conducting focus groups) acted as the moderator (wibeck et al. 2007). the first investigator (a special needs teacher who specialises in pain communication) typed all statements on a laptop and assisted the participants in afrikaans where necessary. the second investigator (a paediatric nurse with specialisation in pain management) reflected on the statements and asked for more information when needed. the statements were projected onto a wall as they were typed, and the discussions were audio-recorded to be used as a reference for the researchers’ data analysis. at the end of the sessions, a member check was performed. all statements were jointly reviewed and revised or extended where necessary. to validate the data and enable participants to determine that the statements truly represented their experiences, two final questions were asked (white & verhoef 2005): (1) do these findings accurately represent your experiences? and (2) is there anything we have missed that you feel should be included? for the purpose of this study, statements considered included professionals’ information about their use of methods, knowledge about methods that would be beneficial in their opinion and information about interventions or resources they perceived missing to address pain management of children with cp. table 4: questions and supporting sub-questions used during focus group interviews. data analysis the statements (mostly equal to one meaning unit) were entered on separate spreadsheets for the five focus groups. a few comprehensive statements included two meaning units (graneheim & lundman 2004). for analyses in this study, all statements related to pain management were merged onto one spreadsheet, that is, both statements related to current strategies and requested additional resources. reductions were made because of duplications and statements not related to cp or pain experiences. all statements were initially reviewed and interpreted together by all investigators. because the strategies about pain management often included several underlying meanings, the statements had to be interpreted according to the context, which is why a manifest approach was not sufficient. statements about interventions that focused directly on pain management were linked to one of the categories of evidence-based intervention options for children with cp, as identified by novak et al. (2013), and for the purpose of this study determined as most relevant, that is, spasticity management, contracture management or improved motor activities and function. in the next step, the statements were condensed, labelled with a code and sorted into two categories that had previously been identified in the larger project by nilsson et al. (2016): treatment strategies (i.e. ‘hands-on’ or immediate treatment strategies and medication to relieve pain) and environmental strategies (i.e. interventions influencing a child’s environment). to be clear about the underlying latent content in statements, all three investigators reviewed the linkages and jointly discussed professional interpretations. thereby, the interpretation could lean on a multidisciplinary background knowledge. finally, identified interventions were analysed and related to the updated knowledge reported in the contemporary meta-review by novak et al. (2013). before the discussion of results, the four levels of evidence were dichotomised into higher and lower levels to indicate intervention options that should be used (s+ and w+) and that should not be used (wand s-) for pain management. ethical considerations ethics approval was obtained from the research ethics committee of the faculty of humanities at the university of pretoria (gw20140201hs) and permission from the gauteng department of education (d2014/226) in south africa. results and discussion the five focus groups generated 164 statements that included information about available intervention options and 47 statements on the perceived need for additional interventions or resources. for the analysis, 21 of the statements about additional resources were excluded as they did not focus on pain management but rather on the need for extended resources. examples of such resources were emotional support and speech training, help with self-care and schoolwork, or support at home that were not the focus of this article. from one of the statements, one could understand how a child in pain might affect everyone around: keeping mind off the pain – she will smile and relax (gets quite tense when she is in pain) – peers in classroom also struggle to attend to their work – they feel sorry for them. (teacher in fg4, statement 49) another statement indicated the breadth of the problems that could exist for the children with cp and that could be taken into consideration in a school setting: constipation – put them on a mat or standing frame helps with constipation – work in a standing frame they are active participants, tables on different levels (basic standing frame). (pt in fg5, statement 12) these comments showed that not only musculoskeletal problems but also gastrointestinal dysfunction may cause pain in children with cp (engel & kartin 2006). novak et al. (2012) also reported that constipation is a problem in more than 25% of children with cp. findings showed that the participants’ ideas about strategies beneficial for pain management of children with cp could fit into the three categories of outcomes as identified by novak et al. (2013) and relevant for pain management (see table 1). the subsequent discussion of the results will thus reflect participants’ concerns of their compliance with up-to-date knowledge as reported by novak et al. (2013) (table 5). table 5: treatment and environmental strategies as reported by participants as beneficial for children’s pain management based on novak et al.’s (2013) levels of the evidence of interventions for children with cerebral palsy. current intervention options treatment strategies with higher-level evidence most of the treatment strategies discussed during the focus groups concerned motor activities and functioning (see table 1). not all statements really explained what it was about, but typically physiotherapy plays a central role in managing cp (anttila et al. 2008). motor activities focus on gross motor functioning and mobility and pts use a variety of physical approaches to promote the well-being of a child. the role of a pt is related to that of an occupational therapist, who mostly focuses on fine motor functioning. both of these professions teach caregivers how to handle their child at home and recommend mobility devices when needed. many interventions mentioned by the participants fell within the framework of these two professions, and teachers seemed to lean against them as they often referred a child in pain to a therapist or asked the therapist to come to the classroom to support the child. early intervention, that is, child rehabilitation, and orthopaedic management must be prioritised because even if it cannot lessen the severity of the condition, it can stop the worsening of the status of cp and improve the child’s well-being (herskind, greisen & nielsen 2015; novak et al. 2017). because of musculoskeletal problems, a child with cp can become progressively worse without intervention that could lead to nociceptive musculoskeletal pain. therefore, early special care should be provided to children with cp in south africa as cp cannot be cured. in addition, ei may have the potential to prevent chronic nociceptive musculoskeletal pain arising from non-treatment at an early age. to become effective, novak (2014) reports that ei should be child-active, repetitive and structured, including gross and fine motor functions. even though the meta-review by novak et al. (2013) does not specifically focus on pain-related interventions, it is well known that pain in children with cp has its sources in hip dislocation, scoliosis, spasticity, tension, short muscles (i.e. contractures) and posture (novak 2014; stähle-öberg & fjellman-wiklund 2009). therefore, one can assume that improved mobility affects pain favourably. for example, because the child can load the skeleton to reduce spasticity, perform movements that prevent contractures, and adjust the position in sitting and standing. it is further suggested that goal-directed functional training to improve motor activities should be included in the standard care of children with cp (novak et al. 2013) to prevent chronic nociceptive musculoskeletal pain. the goals are set together with the family to make them meaningful and realistic, while the performance of interventions is simultaneously discussed. tasks that are considered important enhance the child’s motivation and lead to more frequent training, especially if they are experienced as fun and mean improved participation in desired contexts (novak 2014; rosenbaum & gorte 2012). three specific intervention options with higher level of evidence were mentioned by the participants: hydrotherapy, electrical stimulation and hippotherapy. however, it was not obvious to what extent they were available. context-focused therapy is another compensatory approach that could be used from early age. it is compensatory but not focused on the child. instead, the task or the environment is changed to promote the child’s successful task performance. in school settings, training could be integrated during classes by using standing positions, arranging materials to force reaching movements or short walks (adolfsson et al. 2018). seating and positioning (including pressure care) were frequently mentioned by both teachers and therapists who seemed aware of its importance. in addition to preventing or reducing pain, correct seating and positioning could prevent contractures or scoliosis (novak et al. 2017), improve hand and arm functioning (cans, de-la-cruz & mermet 2008) or reduce the risk of pressure ulcers. it was a positive fact that all participants seemed to understand the importance of this intervention option. home programmes and parent training generally aim to improve the motor activity performance of children with cp (novak et al. 2013). to achieve a high level of evidence, such programmes and training should be child-active, repetitive and structured with functional tasks meaningful for the child (novak 2014). most often, caregivers have the task of initiating the training in home settings and therefore they should be trained to understand how important it is to regularly exercise. the participants expressed an ambition to share their inter-professional knowledge with the caregivers: ‘home visits – whole team go together to the home to assist caregivers how to help the child at home’ (fg5, statement 26). it could, for example, be ‘not to leave the child in wheelchair the whole day [but in] different positions’ (fg3, statement 8). frequent positioning could prevent children from developing contractures and thus attend classroom activities with less pain. to enable regular training for pain management in addition to general developmental training, parent support activities such as parent evenings, support groups or newsletters had previously been offered by the schools. among the topics discussed were the following: ‘what type of shoes to buy for the child (ankle boot rather than slipper); perceptual development of the child, and what games parent could play with child and why’ (ot, fg3, statement 7). enhancing caregivers’ competence in pain management could positively influence their self-worth and own feelings of being in control (dunst & dempsey 2007). regrettably, the implementation of parent activities had met many obstacles, such as caregivers’ low level of education, their poor literacy skills, lack of transportation or finances to travel to the school (adolfsson et al. 2018). as such, none of the participating schools offered courses for caregivers during the time of data collection, although it is regarded as a recommended high-level evidence intervention option. it is recommended that school-based therapists should become creative in their support to caregivers. the possibility of using mobile phones to provide parent training could be investigated, as reports indicate that 51% of south africans own smartphones (silver & johnson 2018). treatment strategies with lower-level evidence all of the treatment strategies discussed so far were recommended by novak et al. (2013). other strategies mentioned during the focus groups could be reconsidered because of their low levels of evidence. even though the statements were interpreted according to the context, the specific intervention was sometimes not clarified. for example, stretching could be described as child-active: ‘pain can’t be an excuse – in class, stretch, get the muscles moving, get muscles warm – the way to get children involved = moving around a lot, moving around will help with pain, stretch muscles, children are active in class, move around’ (ot, fg5, statement 4). it could also be interpreted as a use of casting constant stretching, but most often it was understood as manual: ‘when she tells her leg is sore, he will pull her’ (pt, fg4, statement 4). contracture prevention via manual stretching is a child-passive intervention with rather weak evidence that it can increase the range of movement, reduce spasticity or improve walking efficiency in children with spasticity (novak et al. 2013). passive (manual) stretching means that a child moves the targeted joint to the available end range of motion supported by a therapist or other person (gorter et al. 2007). according to pin, dyke and chan (2006), sustained stretching of longer duration would be preferable to improve range of movement and to reduce spasticity of muscles. in addition to passive stretching, three more categories can be distinguished (gorter et al. 2007): (1) active stretching, that is, without support and preferably within daily activities, (2) therapeutic stretching with techniques based on proprioceptive neuromuscular facilitation and (3) sustained passive stretching supported by mechanical means, such as standing table or equipment such as orthoses, splinting or casting. decisions on the most relevant stretching technique could be guided by questions (gorter et al. 2007). if the child is able to actively move the joint to the available end range of motion, active stretching within daily activities is recommended. if not, one should focus on the child’s ability to move the joint actively. if the child lacks this ability, sustained passive stretching is recommended. if the child is able to actively move the joint, the pt can choose between, or combine, all the alternative stretching options. mechanisms of muscle contracture in children with cp are not clarified and evaluations of the effectiveness of different stretching techniques are unresolved, mainly because of methodological flaws in many studies, the samples studied being too small or that there are too few studies in the evaluations. wiart et al. (2008) conclude that more research is needed to explore the structural changes that occur in the shortened muscles of children with cp and the effects of stretching practices. they recommend that pts should consider innovative alternatives and strategies to integrate therapy with fun, everyday physical activities that the children like. during the focus groups, therapists regularly mentioned ndt and asked for education to increase their skill levels. neurodevelopmental therapy is a child-passive, time-consuming, widely spread motor therapy. during the past 50 years, ndt has influenced physical, occupational and speech therapies but has been evaluated as less effective in movement and functioning (butler & darrah 2001). although ndt includes positioning presented as ‘reflex-inhibiting’ postures, it does not carry over into movement or function, and based on strong evidence it does not improve contracture and tone (butler & darrah 2001; novak et al. 2013). novak et al. (2013) recommend casting as a better intervention for contracture management, bont as more effective for tone reduction and motor learning as better for functional motor gains to help children to take control over their own movement, including balance. therefore, and compared to ndt, it is better to identify functional, meaningful tasks to treat the children in their daily settings where they live, play and learn. environmental strategies with higher-level evidence casting is an alternative and merely preventive intervention that is best used in new contractures (novak 2014). it means that individually adapted plaster casts are applied to limbs in a stretched position, aiming to entail muscle lengthening, that is, sustained passive stretching supported by mechanical means. the fact that no statements were made about pain in upper limbs could be a proof that pain in children with cp is more often located in the legs than in arms and the discussion is limited to lower limbs. casting is less effective than surgery, while ‘standing frames’, which were frequently mentioned by participants as being used for a similar purpose, are even less effective than casting. ‘position with open hips in standing frames to develop the joint’ (ot, fg3, statement 8). however, standing frames are beneficial in the sense that they can be used by more than one child. even though they are not individualised, standing frames could be useful for patients with low bone density or constipation (novak et al. 2013). additional resources perceived as missing treatment resources medication for spasticity reduction (bont, baclofen, etc.): it is essential to conduct pain screening to identify pain prevalence, localisations and patterns of distribution to classify pain and consider the multiple mechanisms which may contribute to pain. however, it is also necessary that healthcare professionals immediately acknowledge pain and focus on pain reduction (westbom et al. 2017). botulinum toxin treatment has most often been used in 4–6-year olds to reduce spasticity (franzen, hägglund & alriksson-schmidt 2017). healthcare professionals should offer evidence-based intervention, such as bont, although it is necessary to carry out intervention in a comfortable way (nilsson et al. 2017). the children with cp in south african schools lacked medical treatment in terms of evidence-based medicine (nilsson et al. 2016). it was reported that it is difficult for children with cp to access effective pharmacological agents such as bont and baclofen, as professionals at schools are not allowed to provide children with medicine without a medical doctor’s prescription. other challenges reported were related to, for example, financial constraints, long waiting times for medical appointments or nurses’ understanding that these pharmaceuticals caused negative side effects, such as drowsiness (table 6). the availability of medical doctors in the school teams to better institute evidence-based care for pain management and hip surveillance programmes for children should thus be explored. table 6: additional treatment and environmental resources that professionals perceived as needed to obtain and secure a satisfactory pain management for children with cerebral palsy related to the levels of the evidence of interventions for children with cerebral palsy as reported by novak et al. (2013). surgery and postoperative therapy: many children with cp may benefit from orthopaedic hip or other surgery. single-event multilevel surgery (semls) is explained by novak et al. (2013) as: [a] series of simultaneous orthopaedic procedures at different levels of the lower limb to manage contractures, optimise skeletal alignment, improve gait, and prevent ambulation deterioration or postural deterioration secondary to musculoskeletal deformities. (p. 895) novak et al. (2013) state that semls could avoid multiple surgeries. findings from an interview study with caregivers added that hip and scoliosis surgery reduced the children’s pain (stähle-öberg & fjellmanwiklund 2009). child-active physiotherapy during at least 1 year after orthopaedic surgeries is recommended to improve functioning, for example, the child’s gait level (table 6). environmental resources statements concerned the availability of external medical facilities (table 6), such as hospital care for children with cp from a young age, perceived to prevent deformities and unnecessary suffering: ‘children were never managed and picked up from early on (primary healthcare) – deformities’ (fg1, statement 26). participants wanted the children to get what they need on time, such as faster access to surgery, postoperative care facilities and access to rehabilitation. in addition, statements involved improved hospital care for children whose caregivers did not have medical aid and giving priority to the disabled – especially children. the statements suggested that – aside from orthopaedic surgeons – children in south africa may not have sufficient access to orthotics and prosthetics services and reinforced the challenge of gaining access to external specialists (e.g. orthopaedic professionals in public hospitals) for the children’s orthopaedic needs. according to a recent report, there is no shortage of orthopaedic professionals in south africa (ramstrand 2018). this report stated that 793 educated prosthetics and orthotics professionals (pops) were available, a number that is estimated as sufficient. compared to developing countries where the recommendation is set to 5–10 pops per 1 million citizens, a sufficient number for south africa’s 56 million citizens should be 560 pops. as health professionals at schools for special educational needs treat the children with cp, the opportunity for them to refer the children to external resources without the long waiting times at public hospitals (as mentioned during the focus groups) should be investigated. other resources perceived as missing the participants expressed that they needed education in pain management to improve their opportunities to help the children. one such topic could be the use of evidence-based medicine. action or reaction approaches most of the strategies in south african schools had a reaction approach, that is, strategies to intervene when a child is already experiencing pain (adolfsson et al. 2018). in all focus groups, hip pain was mentioned as a main cause of pain, which might explain the participants’ focus on positioning. a transition to an action approach would most likely help by reducing the children’s spasticity and prevent severe contractures leading to hip displacement progressing into dislocation. hip dislocation is preventable through early identification and intervention. as hip displacement is directly related to the level of gmfcs and most children remain at the same level from 2 years of age, this system could be used to identify hips at risk and indicate the need for interventions and systematic follow-ups in terms of hip surveillance programmes (hägglund, lauge-pedersen & wagner 2007). positive outcomes of hip surveillance programmes have been reported by researchers (hägglund et al. 2007, 2014; wynter et al. 2011). such programmes include a standardised individual follow-up of gross motor function, clinical assessment and radiological review. it is an ongoing process that is jointly followed by pt, ot and orthopaedic surgeons and should continue until skeletal maturity so that the right interventions can be provided in a timely manner. intervention plans include first non-surgical strategies, such as positioning, use of orthotics and assistive devices and spasticity-reducing pharmaceuticals. in addition, reconstructive hip surgery and/or semls might be necessary. preventive surgery can include adductor-psoas tenotomy, various osteotomies of the proximal femur or pelvic reconstruction (hägglund et al. 2014). thomason and graham (2014) pinpoint surgery as essential, providing very good outcomes and an improved quality of life for many children with cp. novak (2014) refers to alternatives for effective rehabilitation intervention programmes that could also include pain management intervention. these should ‘include child-active learning-based interventions for motor and functional skill performance gains’ (novak 2014:1151). examples were given as bimanual therapy, cimt, goal-directed training, home programmes and occupational therapy after bont. other alternatives were orthopaedic and therapy interventions such as bisphosphonates, bont, casting, diazepam, fitness training and active hip surveillance, as well as compensatory and environmental interventions, such as context-focused therapy. in south african school settings, all the elements of recommended interventions are not relevant in addition to learning tasks. however, healthcare professionals who are working in the schools could keep the alternatives in mind and work for an enhanced focus on preventive pain interventions, implementation of a hip surveillance programme and improved collaboration with external doctors, such as orthopaedic surgeons. limitations the fact that the data collection was conducted 5 years ago is one of the limitations of the study. evidence of pain management in children with cp may have changed over these past 5 years but up-to-date universal pain management strategies have been described and discussed in the article. nonetheless, this study clearly showed a discrepancy between published guidelines and clinical practice within school settings. as a more recent meta-review has not been found, the scientific knowledge is deemed valuable even today. another possible change during the years concerns the intervention options in the schools. therefore, a follow-up of this study with new data collection evaluating whether the conditions may have changed since data collection is proposed. as the study was limited to the gauteng province of south africa, the results cannot be generalised for the whole country. conclusion this study showed a discrepancy between published evidence and clinical practice for the management of chronic nociceptive musculoskeletal pain in children with cp as reported by professionals working in south african school settings. the results showed that even if evidence of best practice in pain management exists, it may not guarantee that children with cp receive this management in their daily care within school settings. if chronic nociceptive musculoskeletal pain is not acknowledged and treated, it might affect the children’s learning and development. recommendations for implementation in practice improved knowledge about and accessibility to pain management interventions are needed, such as: education about evidence-based practice for interventions of children with cp systematic follow-ups of the health status of children with cp, focusing on the hip displacement and muscle contractures orthopaedic resources such as surgeons, prosthetics/orthotics professionals and individually adapted orthotic devices shorter waiting times for doctors’ appointments medication for spasticity reduction, for example, bont and baclofen better opportunities for collaboration with caregivers treatment integrated in daily settings where children live, play and learn. acknowledgements the authors wish to thank the participants who generously shared their experiences. they also thank the principals of the schools involved in this study, who gave permission for their staff to participate in the focus groups. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions all authors agree to be accountable for the content of the work. they all collaborated in the planning, data analyses and writing of this article. as notified in the ‘method’ section, the three authors had different professional backgrounds and their involvement in the different steps of the data collection process and analysis was essential and therefore explained. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views expressed in this article are the authors’ own and not an official position of any of the institutions. references adolfsson, m., johnson, e. & nilsson, s., 2018, ‘pain management for children with cerebral palsy in school settings in two cultures: action and reaction approaches’, disability and rehabilitation 40(18), 2152–2162. https://doi.org/10.1080/09638288.2017.1327987 alagesan, j. & shetty, a., 2010, ‘effect of modified suit 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cerebral palsy, viewed n.d., from https://ausacpdm.org.au/wp-content/uploads/sites/10/2015/06/140070thomason-hips-booklet-a5_web.pdf. appendix 1 table 1-a1: levels of evidence (grade†) for intervention options relevant for pain management. descriptions from novak et al. (2013:888–897) or novak (2014:1148–1151). abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) robert ngarambe department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda department of rehabilitation, centre of excellence in biomedical engineering and e-health, university of rwanda, kigali, rwanda jean baptiste sagahutu department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda assuman nuhu department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda david k. tumusiime department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda department of rehabilitation, centre of excellence in biomedical engineering and e-health, university of rwanda, kigali, rwanda citation ngarambe, r., sagahutu, j.b., nuhu, a. & tumusiime, d.k., 2023, ‘functioning among persons with lower limb amputation with or without prostheses in rwanda’, african journal of disability 12(0), a1193. https://doi.org/10.4102/ajod.v12i0.1193 original research functioning among persons with lower limb amputation with or without prostheses in rwanda robert ngarambe, jean baptiste sagahutu, assuman nuhu, david k. tumusiime received: 23 jan. 2023; accepted: 28 aug. 2023; published: 17 oct. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: limb loss limits functioning and restricts participation in various environments. persons with lower limb amputations (plla) experience challenges ranging from self-care and independence to psychological disorders that negatively impact their functioning. objectives: to assess the functioning and the level of disability of plla with or without prostheses in rwanda. method: a descriptive, cross-sectional study was conducted among pllas aged 18 years and above in 10 districts of rwanda. a total of 247 participants were purposively selected to fill the questionnaires. descriptive and inferential statistics using t-test and binary logistic regression were performed to analyse data using statistical package for social sciences (spss) (version 21.0). results: out of 247 plla, 99 (40.1%) had prostheses and remaining 148 (59.9%) did not. majority of plla without prostheses reported having more difficulties in mobility (s.d. 3.98), participation (s.d. 5.18) and life activities (s.d. 3.87). the majority of plla reported mild and moderate functioning in the domains of cognitive (odds ratio [or] 8.842, 5.384 with 95% confidence interval [ci]) mobility (or 16.154, 2.485 with 95% ci) and participation (or 13.299, 15.282 with 95% ci). conclusion: persons without prostheses demonstrated reduced level of functioning and high levels of disability compared to those with prostheses in all domains. however, the mobility, self-activities and the participation domains were the mainly affected. contribution: the study helps to understand the needs of the plla and emphasises that not only having prostheses can improve functioning but also emphasises the psychosocial aspects to reduce disability. keywords: functioning; disability; mobility; participation; persons with lower limb amputation; prosthesis. introduction persons with lower limb amputation (plla) experience reduced mobility, which leads to a number of difficulties ranging from self-care, independence and psychological well-being (alessa et al. 2022). lower limb amputation (lla) highly leads to physical disability because of the loss of a body part (limb) that limits activity and restricts participation in various environments (kostanjsek 2011). decline in functioning leads to increase disability among persons with lla and is further exacerbated by limited access to prostheses in low-middle income countries (mattick et al. 2022). although persons with lla may use other assistive technologies (at), prostheses are the most appropriate for mobility for an optimum functioning (batten et al. 2019). in low-income countries such as rwanda, the availability, accessibility and affordability of prostheses are challenges. therefore, without prostheses, the functioning and well-being of persons with lla are highly affected (de witte et al. 2018). with limited functioning, plla face challenges in education or finding employment, thus being among the most vulnerable in the society. without employment and a source of income, plla become a burden to the family and society in general (van twillert et al. 2014). improved functioning of persons with lla can be enhanced through the use of prostheses, in addition to other rehabilitation interventions such as gait training and improving mental health to reduce the level of disability (batten et al. 2019). the livelihood of persons with lla may depend on having prostheses to enable them to contribute dynamically and effectively in their community, as well as to engage in income-generating activities (zidarov, swaine & gauthier-gagnon 2009). the disability of persons with lla is not only caused by reduced functioning as a result of limb loss, but may rather be aggravated by both environmental and personal factors (biggeri et al. 2014). environmental factors such as a lack of basic infrastructure are the major hindrance to the use of prostheses in lowand middle-income countries; hence, reduced functioning. more so, individual factors such as psychological and emotional stress caused by the loss of limb are also key factors in functioning and participation (von kaeppler et al. 2021). the use of prostheses by persons with lla is associated with a comprehensive rehabilitation programme which is aimed ultimately towards achieving functioning independence within the psychosocial, physical, as well as vocational aspects (järnhammer et al. 2018; layton & steel 2015; van twillert et al. 2014). in rwanda, not much is known about the level of disability and functioning of person with lla the aim of the study therefore was to compare the levels of functioning and disability in people with and without prostheses in rwanda. research methods and design the study was conducted in 10 out of 30 districts in the 4 provinces and the city of kigali in rwanda. a random sampling of two districts were selected from the four provinces and the city of kigali in rwanda. these were rusizi and nyamashake in the western province, huye and nyanza in the southern province, musanze and rulindo in the northern province, kayonza and kirehe in the eastern province, and kicukiro and nyarugenge in the city of kigali. a cross-sectional, descriptive study design was used to assess the functioning and disability levels of persons with lla. the population sample was retrieved from the database of the national council of people with disabilities (ncpd) in the 10 districts which was 362 persons with lla. the ncpd is a government agency gazetted by law to oversee all activities of persons with disability in rwanda. a total of 247 persons with lla participated in the study from the 362 persons with lla in the 10 districts. the study included participants with lla who were 18 years and above, and excluded plla with spinal cord injuries or any other lower limb impairments that might impact on the use of prostheses. the participants in the study were recruited through the ncpd at the district; thereafter, the research assistant contacted the participants from their villages and met them at the sector administration office for data collection. the researcher explained in detail the purpose of the study to the participants, requested their voluntary participation, and then collected information from them by filling the questionnaires, while addressing and clarifying any concerns the participants had about the questionnaire. the research assistant also administered the questionnaires to participants who did not know how to read and write. the 36-item world health organization disability assessment schedule 2.0 (whodas 2.0) has been endorsed by the world health organization (who) to measure physical, mental, social and functioning disability (üstün et al. 2010). the whodas 2.0 assesses the functioning and disability in six domains – cognitive, mobility, self-care, getting along, daily life activities and participation in society (garin et al. 2010). the domains assess different dimensions of activities in communication and thinking activities, movement challenges, taking care of oneself, socialising with others, difficulties in the everyday activities and difficulties in participation in society. the whodas 2.0 version follows a five-point likert scale (0 = none, 1 = mild, 2 = moderate, 3 = severe, 4 = extreme/cannot do anything) regarding difficulties for each item faced in the past 30 days (available from the who website: https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health/who-disability-assessment-schedule). the whodas 2.0 has proved to be reliable since it has been used and compared in different context including sub-saharan african countries like rwanda among children, ethiopia and tanzania (cronbach alpha = 0.82) (habtamu et al. 2017; mwanyangala et al. 2010; scorza et al. 2013; silveira et al. 2013). the validity is also high since it has been validated in both lowand high-income countries, and has shown a high concurrent validity among specific domain correlations after concurrent administration in comparison to the international classification of functioning (icf) domain (üstün et al. 2010). the questionnaire was translated from english language to kinyarwanda language. both forward and backward translations were performed by two professional translators to address the cultural and linguistic equivalence. regarding the opinion on the clarity, quality of translation and suitability of the study, the questionnaire was sent to two specialists in the field of rehabilitation. the study was approved for the ethical clearance by the institution review board (irb) of the university of rwanda, college of medicine and health sciences; n°369/cmhsirb/2020. permission was obtained from the ncpd n°485/ncpd/2021. permission was granted by the district authorities to meet persons with llas from their communities. descriptive statistics were performed to summarise the demographic data using statistical package for social sciences (spss) (version 21.0). the whodas domain scores were summed to overall whodas score, then transformed into a 0–100 scale, with 0 representing no disability and 100 representing the highest disability. the chi-square was performed to determine the association between persons with lla with or without prostheses and demographic data. the t-test was performed to compare means of functioning between persons with and without prostheses. binary logistic regression analysis was carried out to determine the association between persons with or without prostheses and functioning domains among participants. the level of significance was set at (p < 0.05). ethical considerations the study was approved for the ethical clearance by the institution review board (irb) of the university of rwanda, college of medicine and health sciences with (ethical clearance number n°369/cmhsirb/2020). permission was obtained from the ncpd; n°485/ncpd/2021. permission was granted by the district authorities to meet persons with llas from their communities. signed informed consent was obtained from all individual participants. results sociodemographic characteristics of persons with lower limb amputations a total number of 247/362 (68.2%) persons with lla participated in this study from the 10 selected districts of rwanda. the low turnout may have been as a result of the inclusion and exclusion criteria or participants felt not comfortable to participate in the study. the age of the participants ranged from 18 to 79 years, with a mean age of 43.4 years (standard deviation [s.d.] = 14.1). among the participants, males accounted for 171/247 (69.2%) and females 76/247 (30.8%). the characteristics of the participants are highlighted in table 1. among the participants, 109/247 (44.1%) males and 39/247(15.8%) female did not have prostheses. there was no statistically significant association between gender and possession of prostheses among persons with lla (p = 0.066). among the participants, the 38–47 year age group had the most prostheses at 25/247 (10.1%), followed by the 28–37 age group at 24/247 (9.7%). majority 166/247 (67.2%) of persons with lla lived in the rural area, of which the 95/247 (38.5%) did not have any prostheses, while among the participants in urban areas 28/247(11.3%) had prostheses. table 1: sociodemographic characteristics of persons with lower limb amputations. function and disability scores among persons with lower limb amputations with or without prostheses the results indicated that persons with lla without prosthesis significantly scored generally higher disability levels (mean 84.32, s.d. 15.67) compared to persons with prosthesis (mean 62.03, s.d. 12.34) (table 2). participants without prostheses were more affected in the physical domains such as participation in society domain (mean 21.14, s.d. 5.18), mobility domain (mean 19.76, s.d. 3.98) and life activities domain (mean 19.50, s.d. 3.22) as compared to persons with prostheses in the same domains of society (mean 18.12, s.d. 3.74), mobility (mean 16.00, s.d. 3.21) and life activities (mean 15.97, s.d. 3.22). although persons with lla reported more difficulties in mobility, life activities and participation, the psychosocial domains such as the understanding and communication and getting along with people domains were equally affected. however, the results further portrayed that there was significant change between participants with prostheses in the domains of understanding and communication (mean 2.04, s.d. 1.62), getting along with people (mean 5.34, s.d. 2.55) and participants without prostheses in the same domains of understanding and communication (mean 6.35, s.d. 3.97) and getting along with people domains (mean 8.36, s.d. 3.11). there was a statistically significant difference in all domains between participants having or not having prostheses (p < 0.001). table 2: functioning domain mean scores of persons with lower limb amputations with or without prostheses. functioning and disability among persons with lower limb amputations the study findings indicated that persons with prostheses in employment had 15 times more chances of better functioning compared to the persons without prostheses (odds ratio [or] 15.477 with 95% confidence interval [ci] of 1.265 to189.83). the difference in functioning within employment was seen in other categories also such as self-employed, volunteers, students and house-keeping among plla with or without prostheses. the study findings show that having a prosthesis among participants had more chances of better functioning among the understanding and communication domain (or 8.842 with a 95% ci of 1.041 to 75.140, 5.384 with a 95% c.i of 0.461 to 62.840). the results from the study revealed that functioning increased in the mobility domain among participants with prostheses (or 16.154 with a 95% ci of 5.595 to 46.637, 2.485 with a 95 %ci of 1.009 to 6.118) (see table 3). there was statistically significant association between having prostheses and level of functioning in mobility domain (p < 0.001). table 3: logistic regression of functioning in domains of persons with lower limb amputations. the study findings indicated that persons with prostheses had increased functioning in the participation domain compared to the persons without prostheses (or 13.299 with a 95% ci of 1.889 to 93.648, 15.282 with a 95% ci of 1.841 to 126.879. there was a statistically significant association between having prostheses and the level of functioning in participation in society domain (p = 0.031). the results further underscored that the level of functioning among participants with prostheses was more likely not to change in the self-care domains. the findings from the study indicated that the level of disability from the overall score showed that participants with prostheses had mild disability (or 3.538 with a 95% ci of 0.535 to 23.395 and moderate disability at or 2.412 with a 95% ci of 0.262 to 22.249). discussion the study assessed the functioning and disability levels of persons with lla with or without prostheses in rwanda. persons with lla are considered as having limited functioning because of the loss of body structure; hence, increased levels of disability (ng et al. 2020). the study findings highlighted that 148/247 (59.9%) of the participants did not have prostheses. the findings are similar to the studies in lowand middle-income countries (lmics) that hinted at a gap in the provision of assistive technologies (visagie et al. 2017). this evidently means with the low provision of prostheses to plla, persons without prostheses will have minimum functioning henceforth causing disability (von kaeppler et al. 2021). furthermore, wyss et al. (2015) argued that limited access to prostheses in lmics is largely because of the lack of components such as knees and feet for fabricating the prosthesis. in addition, limited training of professionals in prosthetic fabrication and limited resources may also contribute to the inaccessibility (järnhammer et al. 2018). among the participants of this study, the age groups 28 years–37 years and 38 years–47 years had the most prostheses than the rest of other age groups and was followed by the 48 years–57 years age group. persons with lla in these age groups may have more access to prostheses because of the fact that they have families to take care of, and therefore have to find a way of improving their mobility to take care of their families through finding employment or other source of income to improve their well-being. as reported in a study conducted in india on the quality of life among persons with lla, prosthetic use increases the chances of employment hence improving livelihood (sinha, van den heuvel & arokiasamy 2011). more so, the same observation has been underscored in a systemic review by hunt et al. (2022) on the effectiveness of interventions to improve the livelihood of persons with disabilities. therefore, more efforts are needed to improve access to prostheses in other age groups in lmics which will lead to increasing level of functioning and resultantly reducing the level of disability. the results of this study indicated that the majority of participants without prostheses were unemployed against the majority of participants with prostheses. however, this also means that without a prosthesis it is hard to engage in income-generating activities, can thus it is hard to afford to prostheses. the findings of this study are similar to a study done in nepal, which indicated that though persons with lla had prostheses, they still had difficulties using the devices because of poor prosthetic technology that could enable them to use prostheses to walk and work in the challenging landscape of the mountainous regions of western nepal (järnhammer et al. 2018) which is similar to that in rwanda. the findings from this study further accentuated that participants with prostheses were more likely to be employed than those without prostheses, which is likely the result of increased functioning afforded by having a prosthesis. the results concur with the findings from the study conducted among patients with schizophrenia, and this severe disability was reported to contribute to their unemployment because of limited functioning (lu et al. 2018). furthermore, the results from this study revealed that participants with prostheses had improved functioning and low levels of disability. von kaeppler et al. (2021) underscored that having prostheses tremendously improves functioning and reduces the severity of disability through enhanced mobility. the findings from this study indicated severity of disability did not depend on either gender or place of residence when using prostheses. however, mobility, life activities and participation in society were dependent on having or not having prostheses among persons with lla in this study. these findings concur with the study done in bangladesh among people with spinal cord injuries that reported environmental and physical barriers that often contributed to activity limitations and participation restrictions, more especially in rural areas (kader 2018). findings from this study also revealed that the female participants were more likely to have high level of difficulties in functioning than the male participants. the results from this study agree with a study done in tanzania that found that men had less physical disability compared to women (mwanyangala et al. 2010). moreover, the findings from this study have revealed that older persons with lla hardly had prostheses compared to the younger ones, and they are therefore likely to have reduced functioning and increased levels of disabilities. the results are in agreement with a study done on persons with lla in india by sihna et al. (2011), who reported that older age and comorbidity were a greater hindrance to functioning and therefore increased levels of disability. although the findings in this study show that severity of disability and reduced functioning among persons with lla may be attributed to age and gender since majority of older and female participants had more disability, this may not be true because these findings differ from a study conducted in lmics – south africa, ghana indonesia, tanzania, kenya, bangladesh, india and vietnam – that did not show any relationship between level of disability, age and gender. though the authors concluded that such a relationship may depend on individual countries, the level of disability is the same across all genders and sociocultural context (gomez-olive et al. 2017). the study findings uncovered that participants had less difficulties in the three domains (cognitive, self-care and getting along with people) than the domains of mobility, life activities and the participation in society. furthermore, the cognitive domain was reported to have the least participants with impairments. this signifies that amputation, being a physical impairment, may not severely affect the mental aspect. however, some may be affected at a certain degree as revealed in this study. the current results differ from the study conducted by amosun, mutimura and frantz (2005) that disclosed that the persons with lla had emotional effects that resulted into secondary level of disabilities, and that further led them into more dependence. the results in study further emphasised that participants in the domains of mobility, life activity and participation in society have more reduced functioning and higher disability levels. literature underscores that limitation to functioning is a result of both intrinsic factors which are directly from the individual and extrinsic factors which are from the environment (reitzel et al. 2021). although this study was conducted in a different setting with different characteristics, the findings were similar to the study conducted by gallagher et al. (2011) which reported that environmental barriers are among the restrictions to participation and hence affecting these domains. furthermore, the study results pointed out that persons with prostheses had less difficulties in the mobility and participation in society domains than their counterparts without prostheses. the results are in agreement with the study done in tanzania that stressed that provision of prostheses improves the functioning as well as the quality of life (von kaeppler et al. 2021) more so, a systematic review done by davie-smith et al. (2017) agrees with the findings in this study that provision of assistive technology such as prostheses may improve activity limitation and participation restriction of persons with lla. prostheses alone cannot improve functioning and reduce the level of disabilities unless personal, environmental and infrastructural challenges are considered to facilitate the mobility of persons with lla in both private and public areas. it is in this regard that the rwandan government enacted policies to improve the accessibility of prostheses such as law on subsidising the cost of healthcare through community health insurance where persons with lla can get prostheses at subsidised cost (kidd & kabare 2019). implications the study findings help to understand the needs of the persons with lla with or without prostheses. the findings emphasise not only the importance of having prostheses but also that environmental and infrastructural barriers should be well-thought-of during the rehabilitation process in order to improve the functioning. the inclusion of psychosocial rehabilitation of persons with lla is considered to improve functioning and reduce disability. thus, initiatives that focus on improving functioning and general welfare of persons with lla are recommended. limitations this study may be the first to assess the functioning of persons with lla in rwanda. the whodas 2.0 questionnaire primarily measures functioning and disability, yet persons with lla may have diverse disabilities that may not all be exhausted with whodas 2.0. however, it was more suitable since the study was mostly looking at functioning of persons with lla. another limitation was that the study being a cross-sectional design may not have exhausted all causes that limits the functioning of persons with lla. a longitudinal design that would follow up with the participants for some time to exhaust the challenges to functioning, was likely the best approach. it is also possible that prostheses may have increased functioning and reduced the levels of disability of the participants. lastly, the study did not find out from the participants if there were other comorbidity factors that could influence functioning of persons with lla. comorbidity factors such as illnesses like diabetes may weaken the body and hence limit the functioning. further research is therefore needed to examine the influence of comorbidities on persons with or without prostheses. conclusion persons without prostheses demonstrated reduced level of functioning and high levels of disability compared to those with prostheses in all domains. the mobility, self-activities and the participation domains were mainly affected. however, the psychosocial domains were equally affected and plla with prostheses were less affected more so, gender and advancing age were highlighted to increase difficulties in functioning and disability among persons with lla. acknowledgements the authors would like to acknowledge all the people who supported and contributed to this study, especially the participants and the research assistants. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions r.n. was responsible for conceptualisation of the study, methods, data collection, analysis, and manuscript writing. d.k.t. supported in conceptualisation of the study and manuscript writing. j.b.s. supported in study methods, manuscript writing and editing. n.a. supported in study methods, analysis and manuscript writing. funding information the study was funded by the east african regional centre of excellence in biomedical engineering and e-health (cebe), at the university of rwanda as a phd scholarship and this paper is requirement to the phd. data availability data supporting the study findings are available on request from the corresponding author (r.n.). the data are not publicly available 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al., 2010, ‘developing the world health organization disability assessment schedule 2.0’, bulletin of the world health organization 88(11), 815–823. https://doi.org/10.2471/blt.09.067231 van twillert, s., stuive, i., geertzen, j.h.b., postema, k. & lettinga, a.t., 2014, ‘functional performance, participation and autonomy after discharge from prosthetic rehabilitation: barriers, facilitators and outcomes’, journal of rehabilitation medicine 46(9), 915–923. https://doi.org/10.2340/16501977-1846 visagie, s., eide, a.h., mannan, h., schneider, m., swartz, l., mji, g. et al., 2017, ‘a description of assistive technology sources, services and outcomes of use in a number of african settings’, disability and rehabilitation: assistive technology 12(7), 705–712. https://doi.org/10.1080/17483107.2016.1244293 von kaeppler, e.p., hetherington, a., donnelley, c.a., ali, s.h., shirley, c., challa, s.t. et al., 2021, ‘impact of prostheses on quality of life and functional status of transfemoral amputees in tanzania’, african journal of disability 10, 1–10. https://doi.org/10.4102/ajod.v10i0.839 wyss, d., lindsay, s., cleghorn, w. & andrysek, j., 2015, ‘priorities in lower limb prosthetic service delivery based on an international survey of prosthetists in lowand high-income countries’, prosthetics and orthotics international 39(2), 102–111. https://doi.org/10.1177/0309364613513824 zidarov, d., swaine, b. & gauthier-gagnon, c., 2009, ‘life habits and prosthetic profile of persons with lower-limb amputation during rehabilitation and at 3-month follow-up’, archives of physical medicine and rehabilitation 90(11), 1953–1959. https://doi.org/10.1016/j.apmr.2009.06.011 abstract background objectives method limitations of the study findings and discussion conclusion acknowledgements references about the author(s) rosemary luger centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa the chaeli campaign, cape town, south africa martha geiger centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa olwethu nqevu the chaeli campaign, cape town, south africa ann bullen the chaeli campaign, cape town, south africa faizah toefy the chaeli campaign, cape town, south africa citation luger, r., geiger, m., nqevu, o., bullen, a. & toefy, f., 2022, ‘the chaeli campaign journal club: strengthening evidence-based practice and contributing to practice-based evidence in under-resourced south african communities’, african journal of disability 11(0), a943. https://doi.org/10.4102/ajod.v11i0.943 review article the chaeli campaign journal club: strengthening evidence-based practice and contributing to practice-based evidence in under-resourced south african communities rosemary luger, martha geiger, olwethu nqevu, ann bullen, faizah toefy received: 08 sept. 2021; accepted: 28 mar. 2022; published: 18 may 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the chaeli campaign is a cape town based non-profit organisation offering programmes largely for children and youth with disabilities in diverse under-resourced communities in south africa. their therapy team established a health professions council of south africa accredited interdisciplinary journal club in january 2012, with the aim to improve the team’s service to the community. objectives: our first objective was to make our practice more evidence-based through reading systematically and critically in our field. our second objective was to write up and share some of our practices to contribute to the generation of practice-based evidence. method: first-person action research was applied. the core group of participants over time comprised two occupational therapists, one physiotherapist, two speech therapists, two teachers and four community development workers. nine iterative cycles of planning, action, review and revised planning have been implemented on an annual basis in this non-formal, long-term action research project. results: for over nine and a half years we have pre-read, discussed and completed evaluation questionnaires on 54 peer-reviewed journal articles, conducted 12 conference presentations and published three articles in accredited journals. participants reported a broadened understanding of issues around disability, more reflective, contextually and culturally appropriate practice and improved interdisciplinary teamwork. conclusion: the chaeli campaign journal club has built the capacity of therapists, teachers and community development workers to find, read, evaluate and use research evidence to improve their practice. it has also given participants the opportunity to ethically research, present and write up their grass roots interventions, thus contributing to locally applicable practise-based evidence. it is hoped that the sharing of our experience will assist and encourage other teams to start interdisciplinary journal clubs as a step towards facilitating two-way knowledge translation from evidence to practice and from practice to evidence. keywords: journal club; interdisciplinary; evidence-based practice; practice-based evidence first person action research; community rehabilitation; under-resourced communities. background evidence-based practice is a fundamental underpinning of professional ethics in the rehabilitation field (buchanan 2011; chabon, morris & lemoncello 2011; olsen et al. 2013). therapists registered with the health professions council of south africa (hpcsa) are required to accumulate continuing professional development (cpd) points to ensure that their clinical skills and knowledge is up to date (hpcsa 2017). the chaeli campaign therapists and teachers established an hpcsa accredited interdisciplinary journal club in january 2012 to improve the service offered to communities. the chaeli campaign is a cape town based, non-profit organisation (npo) striving to optimise the inclusion and participation of children and youth with disabilities in context and age-appropriate activities. the therapy team, which in 2022 includes four community development workers (cdws), an occupational therapist, a physiotherapist, a speech therapist and two teachers work collaboratively and meet formally on a quarterly basis. we have worked in a variety of under-resourced communities, largely in the western cape province of south africa with a focus on the interdisciplinary rehabilitation of children with severe disabilities, carer training, situation-specific inclusive education support where we work alongside children, their families, schools and communities and preventative early childhood development (ecd) stimulation programmes with ecd teachers, classes of children and their parents. across the health and rehabilitation sciences, the gap between clinical practice and theoretical developments has been a concern for some time, as evidenced by both earlier and more recent sources (duncanson, webster & schmidt 2018; frantz & smith 2013; zipoli & kennedy 2005). journal clubs have been identified as a successful means to enhance evidence-based practice and thus close this gap (davis et al. 2014; phillips & glasziou 2004). there is also a need for more practice-based evidence, that is, research and publications about interventions, programmes and case studies in the actual contexts that practitioners work (department of health 2011; murray & newton 2008; straus & haynes 2009). the main aim of starting a journal club was to improve the team’s services to children and youth with disabilities. objectives our first objective was to make our practice more evidence-based through systematically and critically reading and discussing practical applications of published peer-reviewed journal articles in our fields. our second objective was to contribute contextually generated and locally applicable evidence by sharing and writing up some of our grassroots practices (figure 1). figure 1: diagrammatic presentation of our two interdependent objectives. method first-person action research (marshall 2016) was applied as we, the practitioner-participants became the researchers. the choice of the first-person action learning approach was determined as participants became the reflexive researchers in the iterative cycles of planning, implementing and revised planning (marshall 2016; zuber-skerritt 2015). whilst there have been a few changes in participating staff members over the years and students and guests are included at times, the core group of participants over almost 10 years have comprised two occupational therapists, one physiotherapist, two speech therapists, two teachers and four cdws, all of whom are female and whose ages range from 25 to 60 years. nine iterative cycles of reflective and participatory planning, action, review and revised planning have been implemented and are reflected on during the final meeting of each year to ensure that our journal club remains responsive to the changing needs of the therapy team. ethical considerations as a first-person action research project, the researchers were the participants themselves and formal consent was waived. the authors had obtained formal prior permission from their employer to conduct this journal club and the therapy team was invited by the therapy coordinator and expected to participate in the journal club as part of staff development. the cpd accreditation of the journal club meetings (which carries no cost to the participants) and the learning value of the discussions appear to motivate regular attendance with very few exceptions, only in cases of emergency. it is encouraged, but optional, whether staff facilitates sessions or involves themselves in article writing and presentations. praxis the initial cycle in 2012 was facilitated by the speech therapist-academic and therapy team coordinator and included registering as an hpcsa interdisciplinary journal club. since 2013 therapists have taken turns to facilitate discussion meetings and compile the evaluation questionnaire, which consists of 10 questions (multiple choice, true–false and open ended). to upskill themselves the authors participated in in-house tutorials and/or mentoring sessions on sourcing and evaluating articles, basic research methods, principles of ethics and questionnaire design (as required for the evaluation of reading in the journal club meetings for cpd points for the hpcsa-registered therapists). the chaeli campaign’s cdws joined the journal club in 2015. to accommodate varying levels of academic literacy amongst our team, the facilitating therapist provides a summary of the main points at the start of sessions and those not needing cpd points can choose to complete the evaluation questionnaires in pairs to reduce any unnecessary stress. community development workers have played an active role in preparing for and co-facilitating journal club meetings with therapists since 2018. prior to the covid-19 pandemic the authors met face-to-face (indoors) six times per year. more recently we have continued to meet six times per year, either remotely through zoom and whatsapp or in-person outdoors with masks on and physical distancing, depending on the fluctuating lockdown restrictions. all team members are supported to choose relevant articles. at the end-of-year meeting the authors explore topics and articles they would like to discuss at future meetings. the authors choose six articles for the following year, which meet the hpcsa accreditation criteria (e.g. not older than 5 years) and which are preferably south african or related to our grassroots work in a relevant way. thus, regular topics include inclusive education, ethical issues, community participation of children with disabilities, the impact of therapy programmes, the lived experience of families with children with various disabilities (intellectual disability, foetal alcohol syndrome, autism spectrum disorder, communication impairment, spina bifida, cerebral palsy), cultural issues, south african health systems, disability studies, sexuality, the impact of poverty and youth development. at the end of each journal club session, the three open-ended questions in the evaluation questionnaire compiled by the presenting therapist encourage application of learning into their current work to ensure that they have contextualised the articles and can leave with the new knowledge translated into practical skills and competencies to use in their work. it was a huge learning curve for the therapists and teacher involved in writing and getting articles recording some of our collaborative learnings from grassroots work in various under-resourced communities published, as only one member of the team had academic work experience at the beginning. the authors began with areas of work familiar to the whole team and often they first shared their work at a conference as a poster or oral presentation. then, the article writing task was divided into individual small steps, possible target journals were explored and ethical requirements were carefully considered before writing, submitting and refining the articles based on reviewer comments. the authors persisted with this process as they had struggled to find simple, practical peer-reviewed articles in open access journals, which is essential considering that the vast majority of people who work alongside persons with disabilities do not have high academic and research literacy levels. our most recent reflective review took place in the form of a request by the therapy team coordinator in april 2020 to the current therapy team comprising three therapists, two teachers and four cdws to send written replies to three questions, that is: what are some of your highs and lows of taking part in the journal club? how has this journal club influenced your work? has the experience of being part of the journal club led to anything further for you? three therapists (therapist 1, 2 and 3), one teacher (teacher 1) and two cdws (cdw 1 and 2) chose to respond and excerpts from their verbatim quotes are included in the findings and discussion section following a process of thematic analysis by the interdisciplinary team of authors. limitations of the study this was primarily a long-term learning and collaborative capacity development activity and expectations of rigorous research could not be applied. however, recommendations for future research can be made. findings and discussion for over nine and a half years, participants have pre-read, discussed and completed evaluation questionnaires on 54 peer-reviewed journal articles related to our work. the authors have made 12 conference presentations and published 3 articles in accredited journals. ‘a journey towards inclusive education: a case study from a “township” in south africa’ (luger et al. 2012) focuses on two young boys with physical impairment. the authors worked alongside their families and local schools. this was considered important to publish as the creation of facilitating environments and development of open-minded communities is often neglected and results in failed attempts at inclusive education. ‘parents as partners: building collaborations to support the development of school-readiness skills in under-resourced communities’ (pitt et al. 2013) shares a programme that was developed and is still running. it evolved from a need expressed by teachers to have better working relationships with parents and our acknowledgement of how crucial parents are in addressing barriers to learning early on. ‘simple ideas that work: celebrating development in persons with profound and multiple disabilities’ (bullen et al. 2018) outlines some practical suggestions, which were well-received by this usually under-represented population and their caregivers. the simple ideas can be mixed and matched in home and residential settings with children or adults and are all doable in low-resourced environments. participants noted some challenges related to participating in journal club, which are important to be aware of and to mitigate against: ‘an initial low was how daunting it was to read more than the abstract and a more recent low is around not always being able to make journal club a place that everyone feels comfortable and wants to be a part of.’ (therapist 1, female, 40 years old) ‘when i started at the chaeli campaign, journal club was the most scary thing for me. the name i think is quite intimidating and the thought of drawing up the questions was very scary for me. then the first journal club that i had to facilitate was quite daunting.’ (therapist 2, female, 51 years old) however, encouragingly, participants report a broadened understanding of issues around disability: ‘somewhere somehow the topic that we discuss does match with some of the challenges that i come across with my clients. they help me to respond better to the challenges and they also expand my knowledge and understanding on disability matters.’ (community development worker [cdw] 2, female, 35 years old) ‘my work has been influenced as we have covered numerous relevant topics, which have expanded my skill set and i feel confident to look for and read journal articles that relate to a topic of interest after much graded guidance over many years from [speech therapist-academic].’ (therapist 1, female, 40 years old) another benefit reported by participants was of more reflective and contextually relevant practice: ‘it has influenced my work in the way that i am more aware of best practice elsewhere and that there is usually a whole lot more than just therapy per se. whether it is community entry, working with specific communities, development, context in different situations. i often remember something that we spoke about in a journal club when i am planning something new or revisiting what i am already doing.’ (therapist 3, female, 56 years) ‘it really has made me think deeply about things that i do automatically which is not necessarily relevant anymore. it is not an easy process to shift one’s thinking, habits and way of doing things, but journal club has given me the opportunity to do this. journal club has also made me shift my way ofapproaching therapy. i was trained many moons ago from a very top-down western medicine approach. many of our journal articles have challenged this old traditional way. so, i have been reminded that my approach to therapy must be more centred around the needs of the child and family andfor it to be culturally relevant.’ (therapist 2, female, 51 years old) improved interdisciplinary team work was also highlighted by participants: ‘the people in the journal club selflessly share skills i don’t have and directly and indirectly, have moulded me into a better community worker. during journal club meetings over the years, we’ve shared challenges and the therapists, teachers and other community workers always help by figuring out ways, in a discussion that includes me, how my work challenges can be resolved. during these meetings i’ve also been exposed to other people’s field experiences, which even if i don’t particularly need to learn them at the time of discussing, i can always go back to and retrieve if/when the challenges arise.’ (cdw 1, female, 34 years old) ‘i think my high is how the journal club in many ways has cemented our relationships with each other. we learn about how other members of the team approach their work in the context of what is being discussed even if we are not directly involved in the same project.’ (therapist 3, female, 56 years old) ‘it always surprises me how snippets from every article can be related to work at [school] even if at first it seems very academic and not really to do with ecd. it’s when we start discussing it that you see how it can be put into practice.’ (teacher 1, female, 60 years old) conclusion the chaeli campaign journal club has built the capacity of therapists, teachers and cdws to find, read, evaluate and use research evidence to improve their practice and to ethically research, present and write up grass roots interventions. participants report a broadened understanding of issues around disability, more reflective, contextually and culturally appropriate practice and improved interdisciplinary teamwork. it is hoped that the sharing of our experience will assist and encourage other teams, whether at npos, community healthcare centres or rehabilitation centres in under-resourced communities, to start interdisciplinary journal clubs as a step towards facilitating two-way knowledge translation from evidence to practice and from practice to evidence with the ultimate aim being to improve the services offered to communities. furthermore, more formal and rigorous research into action learning methodology and the impact of such a journal club and writing project is recommended. acknowledgements the authors thank the chaeli campaign therapy team for their valuable ongoing contribution to our journal club. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions r.l. drafted the manuscript, o.n. contributed to the conception of the manuscript, a.b., f.t. and m.g. critically revised the manuscript and all were participants and approved the final version to be published. funding information the co-ordination of this project was made possible with funding assistance from the centre for disability and rehabilitation studies, department of global health, stellenbosch university and the chaeli campaign has funded time and other support for therapists, teachers and community development workers to conduct research and to write. data availability the data that support the findings of this study can by made available by the corresponding author, r.l., upon reasonable request. disclaimer the views expressed in the submitted article are our own and not an official position of the institution or funder. references buchanan, h., 2011, ‘the uptake of evidence-based practice by occupational therapists in south africa’, wfot bulletin 64(1), 29–38. https://doi.org/10.1179/otb.2011.64.1.008 bullen, a., luger, r., prudhomme, d. & geiger, m., 2018, ‘simple ideas that work: celebrating development in persons with profound intellectual and multiple disabilities’, african journal of disability 7, 273. https://doi.org/10.4102/ajod.v7i0.273 chabon, s., morris, j. & lemoncello, r., 2011, ‘ethical deliberation: a foundation for evidence-based practice’, seminars in speech and language 32(4), 298–308. https://doi.org/10.1055/s-0031-1292755 davis, c., hendry, i., barlow, h., leonard, a., white, l-a. & coetzee, m., 2014, ‘journal club: integrating research awareness into postgraduate nurse training’, curationis 37(2), art. #1244, 1–9. https://doi.org/10.4102/curationis.v37i2.1244 department of health, 2011, 2011 national health research summit report, national department of health, republic of south africa, pretoria. duncanson, k., webster, e.l. & schmidt, d.d., 2018, ‘impact of a remotely delivered, writing for publication program on publication outcomes of novice researchers’, rural and remote health 18(2), 4468. https://doi.org/10.22605/rrh4468 frantz, j.m. & smith, m.r., 2013, ‘exploring the subjective experiences of allied health professionals in their transition from clinical educators to academia: barriers and facilitators to successful transition’, african journal of health professions education 5(1), 37–41. https://doi.org/10.7196/ajhpe.224 geiger, m., bullen, a., luger, r. & phillips, d., 2016, ‘practitioner to researcher-writer: it’s working! rehabilitation practitioners developing evidence informed practice & contributing to practice based evidence’, in iced & heltasa combined conference poster presentation, cape town, south africa, november 22–25, 2016. hpcsa, 2017, continuing professional development guidelines for the health practitioners, viewed 10 january 2018, from https://www.hpcsa.co.za/uploads/professionalpractice/cpd/cpd%20guidelines%20sept%202017.pdf. luger, r., prudhomme, d., bullen, a., pitt, c. & geiger, m., 2012, ‘a journey towards inclusive education; a case study from a “township” in south africa’, african journal of disability 1(1), 15. https://doi.org/10.4102/ajod.v1i1.15 marshall, j., 2016, first person action research: living life as inquiry, sage, london. murray, r. & newton, m., 2008, ‘facilitating writing for publication’, physiotherapy 94(1), 29–34. https://doi.org/10.1016/j.physio.2007.06.004 olsen, n.r., bradley, p.k., lomborg, k. & nordtvedt, m.w., 2013, ‘evidence-based practice in clinical physiotherapy education: a qualitative, interpretive description’, bmc medical education 13, 52. https://doi.org/10.1186/1472-6920-13-52 phillips, r.s. & glasziou, p., 2004, ‘what makes evidence-based journal clubs succeed?’, bmj evidence-based medicine 9(2), 36–37. https://doi.org/10.1136/ebm.9.2.36 pitt, c., luger, r., bullen, a., phillips, d. & geiger, m., 2013, ‘parents as partners: building collaborations to support the development of school-readiness skills in under-resourced communities’, south african journal of education 33(4), 774. https://doi.org/10.15700/201412171334 straus, s. & haynes, r.b., 2009, ‘managing evidence-based knowledge: the need for reliable, relevant and readable resources’, canadian medical association journal 180(9), 942–945. https://doi.org/10.1503/cmaj.081697 zipoli, r.p. & kennedy, m., 2005, ‘evidence-based practice among speech-language pathologists: attitudes, utilization, and barriers’, american journal of speech-language pathology 14(3), 208–220. https://doi.org/10.1044/1058-0360(2005/021) zuber-skerritt, o., 2015, ‘participatory action learning and action research (palar) for community engagement: a theoretical framework’, educational research for social change 4(1), 5–25. abstract introduction and background methodology findings discussion limitations and future directions conclusion acknowledgements references about the author(s) lauren boyd department of psychology, stellenbosch university, south africa marieanna le roux department of psychology, stellenbosch university, south africa citation boyd, l. & le roux, m., 2017, ‘“when he’s up there he’s just happy and content”: parents’ perceptions of therapeutic horseback riding’, african journal of disability 6(0), a307. https://doi.org/10.4102/ajod.v6i0.307 original research ‘when he’s up there he’s just happy and content’: parents’ perceptions of therapeutic horseback riding lauren boyd, marieanna le roux received: 17 aug. 2016; accepted: 18 may 2017; published: 26 july 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is limited global and south african research on parents’ perceptions of therapeutic horseback riding (thr), as well as their perceptions of the effect of the activity on their children with disabilities. objective: to explore and describe parents’ perceptions and experiences of thr as an activity for their children with disabilities. method: twelve parents whose children attend thr lessons at the south african riding for the disabled association in cape town were asked to participate in a semi-structured interview. the qualitative data obtained from the interviews were first transcribed and then analysed using thematic analysis to establish parents’ perceptions of the thr activity. results: the main themes that emerged included parental perceived effects of thr on children, parents’ personal experiences of the services, and parents’ perceived reasons for improvements in the children. the participating parents indicated that thr had had a positive psychological, social and physical effect both on the children participating in the riding, as well as on the parents themselves. conclusion: according to parents, thr plays an important role in the lives of children with various disabilities and in the lives of their parents. the results of the study address the gap in the literature regarding parents’ perceptions of thr. introduction and background the domestication of animals occurred more than 12 000 years ago (all, loving & crane 1999), and since then humans and animals have had a longstanding beneficial relationship. from allowing psychiatric patients to care for animals as a replacement for restraints and drugs (jalongo, astorino & bomboy 2004), to using as companion animals upon recommendation by florence nightingale for chronically ill patients (all et al. 1999), animals have shown enormous potential to help humans. these benefits have led to the use of animals in two main types of interventions: animal-assisted activities (aaa) and animal-assisted therapy (aat) (lentini & knox 2009). the use of horses falls into both of these types of interventions, namely equine-assisted psychotherapy (eap, a form of aat), hippotherapy (ht, a form of aat), and therapeutic horseback riding (thr, a form of aaa). eap uses horses to obtain psychotherapeutic outcomes (lentini & knox 2009; schultz, remick-barlow & robbins 2007), which include improved self-esteem and self-confidence (kersten & thomas, as cited in schultz et al. 2007). to facilitate eap, a mental health professional and an equine professional are required to be present and involved in the therapy (kruger & serpell 2006). with ht, a horse’s movement is used to rehabilitate a person’s physical or movement disorder, and a human services practitioner facilitates the process (silkwood-sherer et al. 2012). although the main focus is on the physical effects (all et al. 1999; kruger & serpell 2006; silkwood-sherer et al. 2012; tseng, chen & tam 2013), it does have psychological benefits for the client (le roux & kemp 2009; zadnikar & kastrin 2011). thr takes place during a riding lesson taught by a riding instructor to a person with a disability or a chronic illness. the aim is to establish a therapeutic bond between the rider and the horse and to improve the quality of life of the rider (all et al. 1999; bass, duchowny & llabre 2009; silkwood-sherer et al. 2012). change takes place through interaction with the horse and by improving the functioning of the person with disabilities through the riding activity. thr was the focus of this study. why therapeutic horseback riding? globally as well as within the south african context, literature on parents’ perceptions of thr and its effect on their disabled children, as well as their own personal experiences of the activity, is limited. the available literature, however, reveals beneficial experiences and effects of thr on children with disabilities (davis et al. 2009; miller & alston 2004; scialli 2002; surujlal & rufus 2011). there is limited south african research on parents’ perceptions of thr as an activity for their children with disabilities (surujlal & rufus 2011; van wyk 2014). thr has multiple physical, psychological and social effects, while at the same time disguising a therapeutic activity as an enjoyable experience. it brings together exercise and focus in a way that disguises its actual intention of assisting people with disabilities. thr has the potential to positively affect disabled children’s abilities to perform certain functions. the effects on certain physical, psychological and social functions are supported by bream and spangler (2001) and scialli (2002) who stated that riding benefits people with disabilities mainly in these three areas. britton (as cited in all et al. 1999) also stated that horseback riding for people with disabilities promotes physical, social and emotional healing. physical effects of thr include improvements in participants’ abilities to walk, run and jump (cherng et al. 2009; drnach, o’brien & kreger 2010; low et al. 2005; sterba et al. 2002). gross motor function also improves following thr (cuypers, de ridder & strandheim 2011; scialli 2002; winchester et al. 2002), and improvement is sustained following the end of participation in the activity. postural control and balance (bertoti 1988; land, errington & paul 2002; scialli 2002) as well as coordination (brock 1990; scialli 2002) is another set of physical functions that have been reported to improve following thr. psychological functions, like a sense of accomplishment and achievement (all et al. 1999; davis et al. 2009; elliott, funderburk & holland 2008), resulting in increased self-confidence self-esteem, and self-worth, occurred following thr (all et al. 1999; bass et al. 2009; drnach et al. 2010; lessick et al. 2004; scialli 2002; surujlal & rufus 2011). riding gives people with disabilities a chance to participate in and succeed at something that many people without a disability may hesitate to try (all et al. 1999; lessick et al. 2004). these psychological effects may in turn affect social functioning. a boost in confidence may lead to an increase in social participation (debuse, gibb & chandler 2009). the participative environment and opportunity to interact with other children with similar disabilities also have a positive effect on social functioning (lessick et al. 2004). riding is a multisensory experience in which the participant is interacting with the horse as well as riding it (bass et al. 2009), and communication with a horse may be less threatening as horses cannot speak back (elliott et al. 2008). hence, it was found that participants with autism spectrum disorders had improved communication skills following thr (grandin, fine & bowers 2010). the majority of the literature reviewed focuses on the effect of thr on separate domains of functioning (i.e. physical, psychological or social), and only a few focus on the effect of thr on all domains of functioning (davis et al. 2009; elliott et al. 2008; scialli 2002). this study did not focus on any specific effects of thr but rather aimed to gauge a general overview of the activity and its effects from the perspective of participating children’s parents. methodology research question the following question guided the research and the data collection: what are parents’ perceptions and experiences of thr lessons for their children with disabilities? research design an exploratory qualitative research design was chosen for this study. it is appropriate as the aim was to explore parents’ perceptions of thr and not to restrict their answers and thoughts to a predefined set of experiences and views. a qualitative design provides a space for the investigation of an individual’s personal accounts of experiences and perceptions of themselves and the world around them (merriam 2009). participants the research participants were parents of children with disabilities who participated in thr lessons at the south african riding for the disabled association (sarda) in constantia, cape town. convenience sampling was first chosen, as sarda is an organisation that provides thr lessons to children with disabilities. purposive sampling was then employed, which was based on the intended outcomes for the research (lunenburg & irby 2008). the participants had to meet the following criteria for inclusion in the study: a participant had to be a parent of a child who participated in thr lessons. the child had to be between the ages of 6 and 18 years. sarda also teaches lessons to young adults over the age of 18. the wide age range was employed due to the small sample of parents who agreed to participate. the thr lessons had to take place at sarda. parents of children who did vaulting (movement on a stationary horse or barrel) were not included. the literature emphasised the importance of the movement of the horse and interaction with the live animal. the first author spent the first week of the third school term of 2013 at sarda, as well as another week in august. every lesson was attended to obtain a large enough sample, and parents were invited to participate in the study if they so wished. letters requesting participation from the parents, with the contact details of the author, were also given to the teachers to take home with them. this was done for those parents whose children come to the riding lessons by means of school transport. twelve parents agreed to participate in an interview. of the 12 participants, 11 were females and one was male. see table 1 for demographic information on the parents, their children, the reasons for participation in thr and the length of time in the programme. table 1: demographic information of participants. data collection data were collected at sarda in constantia, cape town. twelve parents volunteered to participate in a 30–45 min semi-structured interview at a time and place of their convenience. the interviews were completed over the period of december 2013–june 2014. the interviews lasted for about 15–70 min. a guide that was used in the interviews is included in box 1. all interviews were audio-recorded with permission from the participants. box 1: questions used in the qualitative interviews. data analysis the audio-recordings were used to transcribe the interviews, and the transcriptions were analysed using thematic analysis and inductive reasoning. thematic analysis searches for and analyses themes that occur more than once in the data set, and braun and clarke’s (2006) guidelines for thematic analysis were used by the author. the transcripts were thoroughly and repeatedly read and the author made notes to identify potentially important sections of the data. the data were then coded manually by identifying similar codes and patterns that could potentially make up a theme. broad themes were narrowed down to more refined themes with different subthemes that were given names. trustworthiness to increase the trustworthiness of the study, a few strategies were followed. peer examination by the first author’s supervisor as well as by external professionals with a background in psychology and research allowed for a fresh set of perspectives to be obtained (shenton 2004). following the peer examination, debriefing occurred in which the first author received feedback regarding vague sections in the research and potential biases to be aware of. because of the first author being a horse rider, as well as having done personal research in the area previously, she needed to remain aware of her subjectivity in the study. to achieve reflexivity, self-awareness and reflection were consistently employed during the data collection and data analysis processes. a research journal was kept on days that the first author was physically at sarda and approaching parents during lessons, and also on days that interviews were conducted with parents. this helped the first author to channel any personal experiences into the journal so as to not project them onto the research. previous research findings on the topic were also reviewed to assess the congruency between the current results and previous results (morrow 2005). ethical consideration ethical approval was obtained from the research ethics committee at stellenbosch university (ethics reference number desc_boyd2013). signed informed consent from the parents involved in the study was also obtained before any data collection took place. only parents were asked to participate in an interview. all participants and their children remained anonymous. participation was voluntary, and the interviewees had the right to withdraw from the study at any time. findings three main themes emerged from the data: (1) parents’ perceived effects of thr on their children with disabilities, (2) parents’ personal experiences of the service itself and (3) parents’ perceived reasons for improvements in their children. parents’ perceived effects of therapeutic horseback riding on the children therapeutic horseback riding is a programme that brings about different perceived effects on the children participating – and not in one domain only. most of the parents reported thr as an activity that has beneficial physical, psychological and social effects on their children, and no parents reported any negative effects of thr on their children. physical effects physical effects are potentially the most noticeable effects on these children. parents reported that thr had a big effect on their children’s posture and core stability. most of the children with physical disabilities were initially unstable and limp on the horse and following involvement in the programme they could sit upright. as one participant described: ‘…with his physical, the physical side of it you can see. he’s more erect on the horse, he was quite floppy at first. so you can see that there’s …with the posture, his posture, there’s a significant improvement. he’s erect, he can control his body more.’ (rachel, parent of aaron, 6 years old, diagnosed with cerebral palsy) effects on the children’s muscles were also described. lindy reported that her son had very tight muscles in his legs and was unable to walk ‘so it widens his legs up, which is great, which we wouldn’t normally be able to do at home’. another parent had a child with low muscle tone and the thr had improved his muscle tone: ‘he had low muscle tone for a long time, and that’s improved enormously.’ (stella, parent of cara, 16 years old, diagnosed with cerebral palsy) strengthening of muscles leads to improvement in balance and the ability to ride alone. one mother reported that her child had begun thr lessons with two side walkers and now he no longer needs side walkers. ‘and you know, obviously, going from a leader and two side-walkers to just someone who’s leading the horse now, you know, all of that has been remarkable.’ (stella, parent of cara, 16 years old, diagnosed with cerebral palsy) improvement in the children’s muscles also leads to improvements in their walking abilities. two parents reported that because of the thr there had been an improvement in their children’s abilities to walk: ‘like my friends, and they see him, and they’re so shocked because he’s walking more, he can he used to take one, two steps. now he … he can walk across this field.’ (rachel, parent of aaron, 6 years old, diagnosed with cerebral palsy) ‘we’ve gone from a child who’s not walking to a child who is … and gained some independence.’ (miriam, parent of nancy, 7 years old, diagnosed with cerebral palsy) psychological effects an important psychological aspect that the parents reported was the increase in confidence and independence of their children. ‘it gives them confidence and a sense of that they can control this big animal.’ (derek, parent of ben, 6 years old, diagnosed with autism) ‘i think the horseriding gives him a lot of independence. he can crawl so he does have a bit of independence, but … um … at horseriding i think he just. … i get the impression that he just feels like such a big boy.’ (lindy, parent of fred, 7 years old, diagnosed with cockayne syndrome) pride and increased self-esteem were also reported by some of the parents: ‘academically she can’t compete with any of them, her family members, but with the horseriding it gives her an edge. cuz at least this is for her, it’s her own thing. so she’s special, cuz she’s the only one that does horseriding, and she’s doing well at it.’ (rita, parent of gemma, 16 years old, with left hemiplegia) the children’s involvement in thr activities also brought about noticeable cognitive effects, such as skill-building, increased focus, and academic improvement. ‘and she is actually learning a skill, you know, she’s learning to master a skill. … so ya, i mean i would say it’s a big positive.’ (kate, parent of lily, 6 years old, diagnosed with prader–willi syndrome) the involved nature of the activity, which requires the participants to concentrate and follow instructions, also noticeably led to improved focus, academic abilities, and comprehension, according to two parents. ‘she does become more focused.’ (caitlin, parent of jenny, 9 years old, with a hearing and intellectual disability) ‘it used to be quite difficult to explain stuff to her because her ability to her comprehension is so bad. and her comprehension has improved and… this is especially challenging to her because she’s having to comprehend from so many different people. … and i think that [her ability to follow instructions and do them] has definitely improved over the year.’ (kate, parent of lily, 6 years old, diagnosed with prader–willi syndrome) a huge motivating factor in starting thr as well as continuing it was the joy and happiness parents had noticed their children receive from the activity. parents mentioned the build-up to the riding lesson each week, and the happiness they saw in their children when at sarda and around the horses. ‘she recognises where she’s going, and when she does she squeals with pleasure. and i generally have a squeal of pleasure as we drive up to sarda, and so i know she’s looking forward to it.’ (miriam, parent of nancy, 7 years old, diagnosed with cerebral palsy) the happiness was described as continuing once on the horse and riding: ‘when he’s up there he’s just happy and content.’ (derek, parent of ben, 6 years old, diagnosed with autism) ‘i mean she gets an absolute smile on her face as she gets on the horse, you know, most times, 9 out of 10 times.’ (sarah, parent of cindy, 17 years old, with an intellectual and physical disability) it was also emphasised that the parents understood their children, and that they would definitely know if they were not enjoying the thr: ‘now if she wasn’t … now i know enough that if she wasn’t interested in something, couldn’t care less, couldn’t exist. and it’s not like that; she’s definitely interested in it.’ (hannah, parent of angela, 15 years old, diagnosed with tuberous sclerosis) enrichment of their children’s lives in the form of a unique activity that benefited them in many different ways was an important aspect that many parents perceived as occurring as a result of thr. the parents interviewed regarded thr as an enjoyable activity for their children, spreading the joy and happiness into other aspects of their lives. they mentioned the fact that through thr their children were also spending time outdoors, exercising, and benefiting psychologically and physically: ‘i think for me the most important thing is that it’s a therapy she can benefit from, but she can relax while she’s doing it. she doesn’t realise it’s a therapy. because you know these special needs kids, we sometimes forget about it but they have to work incredibly hard.’ (caitlin, parent of jenny, 9 years old, with a hearing and intellectual disability) thr also places no limits on who can participate. parents liked the fact that their children can participate in the activity, no matter what their disability: ‘i think … you know, the most noticeable thing is that there’s something that she does that she absolutely loves. … and also for her i think it’s so valuable because there’s not a lot of things that she can do that she’s gonna really be able to love, you know.’ (kate, parent of lily, 6 years old, diagnosed with prader–willi syndrome) ‘there’s not a lot of things that he can do so this is the one thing that he can do, so we’ll definitely carry on for as long as we can. … i think if he could horse ride everyday he would [laughs].’ (lindy, parent of fred, 7 years old, diagnosed with cockayne syndrome) the bond between the horses and the children was perceived as aiding the children in obtaining more benefit out of the activity: ‘if they can connect with the horse, love the horse, feel for the horse … it’s just a different dimension to the physiotherapy.’ (rita, parent of gemma, 16 years old, with left hemiplegia) social effects the involved nature of the activity encourages the development of social and behavioural skills, as mentioned by the parents. parents expressed how their children’s speech has improved as well as their social confidence and ability to interact with other people. ‘um … for people like with autism, it helps them with interacting with other individuals, even if that other individual is a horse.’ (derek, parent of ben, 6 years old, diagnosed with autism) ‘building up a relationship with an animal is also something important for a child to learn i think, and also my daughter’s the only child so … i think that’s also nice for her to have that’ (caitlin parent of jenny, 9 years old, with a hearing and intellectual disability) ‘um, then he started getting to a point of, um, social interaction, and it was all about the people that he was meeting, um and interacting with.’ (stella, parent of cara, 16 years old, diagnosed with cerebral palsy) calming effects the movement of the horse as a calming mechanism was mentioned by some parents. some of their children had actually fallen asleep on the horse because the motion had been so relaxing. this effect was mentioned positively in relation to the children who have autism, attention-deficit hyperactivity disorder or sensory issues: ‘i recently once said to someone, if jenny* could do everything she does on a horse she wouldn’t need ritalin. it’s the only time of the week where she’s actually calm.’ (caitlin, parent of jenny, 9 years old, with a hearing and intellectual disability) ‘i think it’s also what they like, um, the kids with sensory issues like predictability, they don’t want sharp sudden sounds, they want something that’s predictable. and the movement of the horse is predictable, you know, it’s kind of calming.’ (sarah, parent of cindy, 17 years old, with an intellectual and physical disability) parents’ experiences of the service itself parents commented not just on the perceived effects of thr on their children, but also on their own experiences of the service itself. they spoke about the environment, being given the opportunity of participating in the service, their satisfaction with the activity, as well as general feedback that they had. uplifting environment parents acknowledged the uplifting and friendly environment in which the riding takes place, paying special mention to the actual environment, the staff, and the other parents who are in similar situations: ‘for me it was really a very safe haven as a parent with a disabled child.’ (caitlin, parent of jenny, 9 years old, with a hearing and intellectual disability) ‘so it’s nice when you are around other people in the same situation. you almost feel free.’ (hannah, parent of angela, 15 years old, diagnosed with tuberous sclerosis) relief for the service for many of the parents the thr service is one that helped them realise that they were not alone and options and opportunities existed for their children. ‘i was in the dark about everything cuz there was no-one to advise me, you know, except for the paediatrician. … so when i saw her on the horse that day i was so excited.’ (sarah, parent of cindy, 17 years old, with an intellectual and physical disability) ‘we’ve been rejected through a lot of things and they accept you. and they accept her [daughter].’ (hannah, parent of angela, 15 years old, diagnosed with tuberous sclerosis) satisfaction for the parent the happiness that the children gain from participating in the thr activity in turn brings about happiness in their parents. as one parent mentioned: ‘before you know the time is up and we’re coming home, you know. and she’s happy. and then i know i’ve done good, you know.’ (sarah, parent of cindy, 17 years old, with an intellectual and physical disability) feedback feedback from the parents during the course of the interviews related to participation in group classes, the number of times that their children were able to ride per week, and networking opportunities. some parents felt that the group riding classes hindered their children’s abilities to improve their riding skills, and that the pace of getting the children ready to ride was quite slow: ‘so then as the instructor … you know, addressing the class, so michael* and one girl got it in one [clicks fingers], and for the others, you know, the blinds come down. … too much instruction.’ (megan, parent of diana, 17 years old, diagnosed with down’s syndrome) ‘cuz obviously with the group class everybody’s disabilities… they can’t really go ahead.’ (rita, parent of gemma, 16 years old, with left hemiplegia) ‘i used to get upset cuz you know, she takes forever to get the kids on, but you know, when she’s doing what … i mean she knows what she’s doing. you can’t hurry these things.’ (sarah, parent of cindy, 17 years old, with an intellectual and physical disability) some parents also mentioned that they would prefer if their children could ride more than once a week, as their children enjoyed it and it would be more effective. constraints such as time, the number of volunteers, and the number of horses meant children were only able to ride once a week: ‘look, riding once a week i think is not as effective as riding five times a week would be.’ (miriam, parent of nancy, 7 years old, diagnosed with cerebral palsy) ‘i mean if it was possible i would have taken her twice a week because also she’s good at it and because she likes it so much.’ (caitlin, parent of jenny, 9 years old, with a hearing and intellectual disability) the parents emphasised their view that sarda needed more networking. they spoke about how important the opportunity to ride at sarda was for many children and families, and the fact that it was a free service. they mentioned that people wasted the opportunity and did not appreciate it: ‘i would say, if possible, sarda need to network a lot more, and go and speak to all those therapists and … um … specialists, and tell them what they can do for their patients.’ (stella, parent of cara, 16 years old, diagnosed with cerebral palsy) ‘and i mean if it wasn’t for them a lot of kids wouldn’t have this opportunity. but there’s a lot of kids that have the opportunity and they’re not prepared to take it. … nobody pays, you don’t pay a cent. not one cent. and people waste it.’ (rita, parent of gemma, 16 years old, with left hemiplegia) parents’ perceived reasons for improvement in their children parents differed about the reasons for their children’s improvement. some parents felt there was a direct relationship between the improvements in their children and the thr activity. other parents witnessed improvements in their children since participating in thr; however, they were not inclined to say it was a direct result of thr as they could not prove anything. improvements due to a combination of circumstances and factors parents who were more inclined to say the improvements they had seen in their children were due to a combination of circumstances were referring to age-appropriate development and their children’s participation in a range of different therapies. ‘how do i measure the results? you can’t. … you can’t say that it’s necessarily because of speech therapy you know, or because of riding, but you know that there is improvement.’ (sarah, parent of cindy, 17 years old, with an intellectual and physical disability) improvements due to therapeutic horseback riding despite believing that a combination of factors had led to improvements in their children, many parents emphasised their belief that thr had beneficial effects on their children. ‘so that’s how i know that the horseriding helps, because in between he’s getting his physio and that, but if he misses out on a big chunk of horseriding then, um, he definitely is stiffer and you battle to get his legs over the horse.’ (lindy, parent of fred, 7 years old, diagnosed with cockayne syndrome) discussion the aim of the current study was to explore parents’ perceptions and experiences of their children’s involvement in thr. twelve parents, each with a child participating in thr activities at sarda, participated in this study. three main themes emerged from the analysis of the interviews. parents’ perceived effects of therapeutic horseback riding on children most parents reported on the noticeable physical effects the thr programme had had on their children. some of the effects that were mentioned were improvement of posture, strengthening of muscles, changes in muscle tone, improvement in balance, and a change in walking abilities. the improvement in posture is supported by a study by land et al. (2002) which showed via motion analysis equipment that after an 8–10-week riding programme, children involved showed improvement in their postural control. the children involved in land et al.’s (2002) study had various disabilities. the parents in the present study reported strengthening of their children’s muscles, muscle tone and an improvement in balance, which confirmed the results of bertoti (1988), who looked at the effects of thr on posture in children with cerebral palsy. two of the parents interviewed in the present study stated that their children had improved walking abilities as a result of the thr programme. cherng et al. (2009), low et al. (2005), and sterba et al. (2002), who studied thr and its effect on children with cerebral palsy, all reported improvements in participants’ abilities to walk, run and jump following thr. parents also reported on the changes in their children’s confidence, independence and pride following participation in the thr programme. the children’s confidence improved after being in contact with the large animal, which confirmed the results of lessick et al. (2004) who found that controlling an animal of approximately 600 kg has a noticeable effect on improving confidence in the rider. increased confidence, which leads to less fear of potentially painful movements for children with physical disabilities, is also reported in studies by bertoti (1988), davis et al. (2009), drnach et al. (2010) and sterba et al. (2002). in other south african studies, parents reported increased confidence in their children with disabilities, which led to more independence (naidoo 2009; surujlal & rufus 2011). children were able to communicate with the horse and they moved from a sense of powerlessness to experiencing success (schultz et al. 2007). children’s sense of achievement increases their motivation, which in turn benefits their motor abilities (bartlett & palisano 2002). the participants achieve success in an activity that is unique and challenging, even for many people who do not have disabilities (all et al. 1999). cognitively, children became more focused and directional as a result of thr. in a study by bass et al. (2009) autistic children displayed more focus and attention after participating in a 12-week thr intervention. when riding, the children are confronted with constant instructions and activities that they need to complete. children in the current study also displayed improvements in speech and planning skills, confirming the results of gabriels et al. (2012) who found significant improvements in children’s language and planning skills following a 10-week thr programme. parents reported an improvement in their children’s social functioning since attending the thr programme at sarda. one parent reported that following interaction with the horse his autistic child was able to better interact with other individuals. this finding confirms that of elliott et al. (2008) who asserted that communication with a horse might be easier for children with disabilities as the animal is non-judgmental. the bond that develops between the children and the horses allows them to develop qualities such as empathy, affection and confidence. children in the thr programme improved their social confidence and enjoyed interaction with other children, as reported by their parents. this confirms results by scialli (2002), surujlal and rufus (2011) and weideman (2007) who all reported that the children in their studies (with a wide range of disabilities) were more engaging and interactive with other children following thr. parents mentioned that the movement of the horse relaxed and calmed their children, with some children so relaxed that they fell asleep. according to stoner (as cited in gabriels et al. 2012), as well as all et al. (1999), it is the warmth of the horse that brings about calm and relaxation for the children. the parents in the current study described their children as calmer, less anxious, and more positive on the days that they had their thr sessions. parents in the current study also described their children as displaying joy leading up to their lessons at sarda. they enjoyed being around the horses, and being part of the thr programme gave them the opportunity to do so. other studies reported the same excitement and enjoyment of the children (drnach et al. 2010; scialli 2002). enjoyment assists the children in pushing past barriers and discomfort caused by their disabilities (lessick et al. 2004). according to the parents, the thr programme not only helped their children’s functional development but also their quality of life. most of these children were involved in other therapies such as physiotherapy, speech therapy and occupational therapy. with thr, however, they could enjoy the activity (elliott et al. 2008) which brings about an increase in interest and enjoyment in their lives (all et al. 1999). according to grandin et al. (2010), thr is therapeutic due to the interaction with the horses and other people as opposed to interacting with just one person. interactions with animals, as reported by holen (2012), also lead to increased happiness, in turn raising the quality of a person’s life. parents’ experiences of the service most parents spoke optimistically about the thr programme and being at sarda. they had a good experience with the environment, the staff and other parents with whom they have built relationships. these results confirm those of scialli (2002) in that parents whose children were participating in thr reported on the environment being peaceful. the parents in the current study praised the staff and the volunteers, as echoed by the parents in the study by elliot et al. (2008). parents have formed relationships with other parents and described sarda as a place where they can relate to each other and make new friends in similar situations. parents were also grateful for the service from sarda, which is a free service. they indicated that they would pay for such a service, as sarda had been an invaluable part of their and their children’s lives. parents in a study by sterba et al. (2002) also confirmed that they would pay for a service like thr. most parents were happy and excited about the thr programme. they as well as the parents in the studies done by miller and alston (2004) and surujlal and rufus (2011) expressed satisfaction and positivity about the thr programme. in the feedback about the thr programme itself, specific mention was made of the group classes, the amount of time that the children are able to ride per week, and networking of sarda. this type of feedback is important for the improvement of programmes (elliot et al. 2008; scialli 2002) as well as for potentially gaining funding (scialli 2002). the gaining of funding is especially important for non-profit organisations such as sarda and could potentially allow for more horses, more lessons and in turn the ability to assist more children with disabilities. parents’ perceived reasons for improvements the parents were divided in their opinions about the changes in their children. some parents believed that it is a combination of factors and circumstances alongside thr that helped their children. the children were growing up, and developmental changes occurred. this comment is supported by ntshangase (2008) who stated that from the age of 6 to 12 important cognitive, social and emotional developments occur. furthermore, physical, cognitive and emotional developments occur from age 12 to adulthood (shefer 2008). the children were also participating in additional therapeutic activities such as physiotherapy and speech therapy. smith-osborne and selby (2010) presented the idea of thr as a complementary form of intervention, alongside conventional therapeutic activities, in assisting in the rehabilitation of disabilities, specifically in children and adolescents. many parents still believed the thr had some effect on their children. one child was not involved in any other form of therapy while participating in thr, and some children showed adverse effects when they had a break from thr but still continued with other therapies. these findings confirmed those of ward et al. (2013) who had found that the beneficial effects of thr in autistic children were not maintained after a break of six weeks from thr but returned once the riding began again. limitations and future directions the sample of the present study was homogenous, which could have limited the richness of the perceptions of the parents. only parents whose children attended lessons at sarda in the afternoon and parents who could receive the emailed request for participation from the stable manager were included. this, therefore, excluded potential economically disadvantaged participants. the sample size was also not large enough to reflect the south african population. only 1 man and 11 women participated. these limitations need to be attended to in future research. a longitudinal study of children who have been participating in the riding programme for more than one year is advised. as mentioned in the study, participants’ children had been part of the riding programme for between 6 months and 13 years. a longitudinal study would potentially show that an extended period in the programme yields more beneficial and more specific outcomes than a shorter stint. a set of questions may also be too restrictive in eliciting parents’ experiences of thr for their children; it is advised that one or two open-ended questions guide future interviews in studies of this nature, allowing for more free flow of conversations, thoughts and experiences. conclusion the findings of the current study highlight the perceptions of parents whose children are involved in a thr programme at sarda, a therapeutic riding association in south africa. as seen from the results, parents perceived the thr programme as having played an important role in the lives of their children. the parents reported on the favourable effects in the physical, psychological and social domains. furthermore, the parents believed their children gained enjoyment and that their quality of life improved. the results are supported by the existing literature. the study also contributed to narrow the gap in the literature on parents’ perceptions of their children’s involvement in thr – in south africa as well as globally. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.b. and m.l. contributed equally to the writing of this article. references all, a.c., loving, g.l. & crane, l.l., 1999, ‘animals, horseback riding, and implications for rehabilitation therapy’, journal of rehabilitation 65, 49–57, viewed 19 february 2014, from http://equineassistedinterventions.org/pdf_dwn.php?tbl=papers&id=69&redir=/paper_display.php?page=15&order=author2&sec=desc. bartlett, d.r. & palisano, f., 2002, ‘physical therapists perceptions of factors influencing the acquisition of motor abilities of children with cerebral palsy: implications for clinical reasoning’, physical therapy 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http://dspace.nwu.ac.za/handle/10394/9. winchester, p., kendall, k., peters, h., sears, n. & winkley, t., 2002, ‘the effect of therapeutic horseback riding on gross motor function and gait speed in children who are developmentally delayed’, physical and occupation therapy in pediatrics 22, 37–50. https://doi.org/10.1080/j006v22n03_04 zadnikar, m. & kastrin, a., 2011, ‘effects of hippotherapy and therapeutic horseback riding in postural control or balance in children with cerebral palsy: a meta-analysis’, developmental medicine and child neurology 53, 684–691. https://doi.org/10.1111/j.1469-8743.2011.03951.x abstract introduction method results discussion limitations conclusion acknowledgements references about the author(s) janke van der walt department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa nicola a. plastow department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa marianne unger department of physiotherapy, faculty of medicine and heath sciences, stellenbosch university, cape town, south africa citation van der walt, j., plastow, n.a. & unger, m., 2020, ‘motor skill intervention for pre-school children: a scoping review’, african journal of disability 9(0), a747. https://doi.org/10.4102/ajod.v9i0.747 note: additional supporting information may be found in the online version of this article as online appendix 1 and online appendix 2. review article motor skill intervention for pre-school children: a scoping review janke van der walt, nicola a. plastow, marianne unger received: 17 apr. 2020; accepted: 05 oct. 2020; published: 10 dec. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is a high prevalence of motor skill difficulties amongst pre-school children living in low socio-economic areas. motor skill impairment can affect these children’s school readiness and academic progress, social skills, play and general independence. objectives: this scoping review investigates the key elements of existing motor skill interventions for pre-school children. method: we gathered information through structured database searches from cinahl, eric, pubmed, cochrane, proquest, psych net, pedro and scopus, using a keyword string. the prisma-scr design was used to identify 45 eligible studies. all included studies investigated a motor skill intervention with well-defined outcome measures for children aged 4–7 years with motor skill difficulties. studies that exclusively focused on children with neurological conditions such as cerebral palsy, physical disabilities or medical/physical deteriorating conditions were excluded. information was charted on ms excel spreadsheets. fundamental concepts were categorised into common key themes and were converted into a proposed framework. results: fifteen intervention approaches were identified. treatment is mostly managed by occupational therapists and physiotherapists. evidence supports individual and group treatment with a child-centred, playful approach in a school or therapeutic setting. whilst session information varied, there is moderate evidence to suggest that a 15-week programme, with two weekly sessions, may be feasible. conclusion: children with motor skill difficulties need therapeutic intervention. this study identified the key elements of existing therapy intervention methods and converted it into a proposed framework for intervention planning. it is a first step towards addressing motor skill difficulties amongst pre-school children in low socio-economic areas. keywords: motor skill difficulties; intervention methods; pre-school children; low socio-economic area; framework; scoping review. introduction motor skills development refers to the acquisition of gross and fine motor skills. impairment in areas such as balance, coordination and eye–hand coordination may impact on play (cairney et al. 2010), peer relationships (wagner et al. 2012), independence skills (van der linde et al. 2015) and academic progress (cameron et al. 2012). these difficulties persist into primary and secondary school (harrowell et al. 2018), and therapeutic input is essential as children do not just grow out of these difficulties (hillier 2007). early support and intervention could help to prevent children failing and reduce the dropout rates throughout the school years (wills 2016). unfortunately, motor skill impairment is an often hidden disability.in developmental disorders such as developmental coordination disorder (dcd), attention deficit and hyperactivity disorder (adhd), autism spectrum disorder (asd) and language disorders. children with foetal alcohol syndrome (fas) and human immunodeficiency virus (hiv)/acquired immune deficiency syndrome (aids) also experience motor impairments. these two conditions have a high prevalence in lowand middle-income countries (lmic) (garrib et al. 2006; van rie, mupuala & dow 2008; olivier, curfs & viljoen 2016). low socio-economic status increases the risk of motor skill impairment amongst children. a brazilian study used the movement assessment battery for children (mabc) and found a prevalence of 33% of dcd/probable dcd amongst socially disadvantaged children (4–10 years) (valentini, clark & whitall 2015). a prevalence study in south africa’s west coast indicated a prevalence of 14.5% of motor skill difficulties amongst pre-school children (van der walt, plastow & unger 2020). valentini et al.’s study (2015) catagorised children who scored below the 15th percentile on the mabc as having probable dcd or being at risk of dcd, whilst van der walt et al. (2020) acknowledged a wider range of possible causes under the umbrella term of motor skill difficulties (scores < 15%). these prevalence figures are high when compared to high-income countries (hic). a population-based study in the united kingdom using the dsm-iv criteria indicated dcd prevalence of 1.7% at age 7 (lingam et al. 2009), whilst a recent dcd overview reports that up to 7% of school-aged children have dcd (caçola & lage 2019). morley et al.’s uk-based study (2015) assessed the motor proficiency of children (4–7 years) using the bruininks-oseretsky test of motor proficiency-2. results indicated that low socio-economic status in hic also significantly affects the development of movement skills (p < 0.001). the motor skills of children living in poverty can further be affected by nutrition, relationships and play opportunities (worku et al. 2018; van der walt et al. 2020). for example, a cross-sectional descriptive prevalence study, using multi-stage clustering by van der walt et al. (2020), found that pre-school children with limited access to a playground scored significantly lower on fine motor skill subtests of the mabc-2 than peers who had access to a playground (p = 0.009). scores on balance subtests were also lower. however, scores for ball skills were on par or in some individuals better than their peers who did have playground access (p = 0.36). we believe that this is most likely because balls are readily available in these settings, despite poverty. literature on motor skill interventions mainly focuses on treatment approaches and programmes used to address difficulties associated with dcd (camden et al. 2014; case-smith, frolek clark & schlabach 2013; hillier 2007; mandich et al. 2001; smits-engelsman et al. 2018). other studies focus on fundamental movement skills interventions, which are interventions geared at developing the foundation skills needed for sport participation in school and in later years (jones et al. 2011; pope et al. 2011). a systematic review (veldman, jones & okely 2016) investigated the efficacy of gross motor skill interventions in early childhood settings, but excluded studies that included children with health problems or with certain diagnoses, for example, autism, where motor skill difficulties may be co-morbid. the studies highlighted the importance of therapist, teacher and parent involvement as well as methodological sound interventions, whilst also emphasising the lack of quantity and quality interventions aimed at addressing motor skill difficulties. a recent systematic review by eddy et al. (2019) focussed specifically on the effectiveness of school-based interventions for children aged 3–12 years. the study concluded that, although school-based interventions overall had positive outcomes, the level of benefit depended on the type of intervention. the authors recommend further research to determine dosage and intensity of interventions, and comparison between targeted and universal interventions. nevertheless, this systematic review only included case-control and randomised studies published between 2012 and 2017. this scoping review investigates the key characteristics and features of motor skill interventions for pre-school children conducted in any setting, up to may 2019, to inform a best practice model that can be adapted for specific communities. because of the wide range of diagnoses, types of interventions, disciplines treating motor skill impairment and intervention settings, a scoping review was the preferred methodology (mckinstry et al. 2014; pham et al. 2014). this review may inform future studies focused on specific interventions or intervention characteristics. method the aim of this scoping review was to identify the key features of interventions for improving motor proficiency in pre-school children. the study followed the prisma-scr guidelines (tricco et al. 2018) and the six stages of planning a scoping review as described by levac et al. (2010). the following research questions were considered: what interventions exist aimed at improving motor skills in pre-school children? how are these interventions provided in terms of frequency, duration, method, intervention provider and treatment setting? what is the level of evidence for these interventions? and what are the recommendations for implementation of these interventions? relevant studies were identified by searching through the following database accessible through stellenbosch university’s library – cinahl, eric, pubmed, cochrane, proquest, psych net, pedro and scopus – using the keywords motor skills, motor impairment, gross motor skills, fine motor skills, treatment, intervention and children. filters were applied for database searches – an example of a database search is available (online appendix 1). records were included when available in english or translated to english. any outcome-based method of intervention aimed at improving motor skills in children between 4 and 7 years of age was included. these included randomised controlled trials (rcts), case-controlled studies and quasi-experimental studies that aimed to determine the effect of an intervention to improve motor skills and using standardised outcomes to measure effect. study participants had to present with a motor skill delay or at least a risk of motor skill delay at the onset of a study. studies investigating only typically developing children and studies that exclusively focused on a neurological condition, physical disability or physical/medical deteriorating condition were excluded. literature reviews, systematic reviews and meta-analyses were also considered. grey literature was considered; however, none of these studies adhered to the inclusion criteria. additional articles/studies were also found using snowballing and pearling (hadfield 2019) by searching through the references of included studies and following up on alerts from database. search results were saved and organised in the reference manager software database of mendeley (elsevier 2020). the latest database search was completed in april 2019. records were screened by title and abstract first and then by full articles. the main screening process was carried out by the primary researcher. the records were sent to two co-researchers to review where there was any uncertainty and were included in the study when agreed by both as suitable. refer to figure 1 for a description of the search strategy (liberati et al. 2009). figure 1: flow diagram of search strategy. the researchers developed an ms excel custom spreadsheet for data capturing. the primary researcher piloted the spreadsheet, which was then reviewed by two secondary reviewers. the final spreadsheet contained 18 main headings. included studies were classified according to the national health and medical research council (nhmrc) hierarchy of evidence (merlin, weston & tooher 2009), which grades studies from level i (highest level) to iv (lowest level) – see online appendix 2. critical appraisal of included studies was not done as these are not typically completed in scoping reviews (arksey & o’malley 2005; pham et al. 2014). the nature of each study was analysed by type (research method) and theme (main idea of the study). numeric coding was used to assign each study to a category by deductive analysis. demographic information was charted according to numeric codes developed as records were analysed. the same process was used to plot data relating to interventions (venue, facilitator, structure and equipment required). for diagnoses and treatment approaches, inductive reasoning was applied to list all possible options to incorporate the possibility for several approaches/diagnoses in a study. this was a fluid and progressive process until all records were analysed. nominal data were input directly for age, group size and session information. data were analysed by calculating either the total, percentage, mean, median or range according to data sets. programme duration and session information (quantity, duration and frequency) were calculated across approaches by mean, standard deviation, median and range as can be seen in online appendix 2. additional important information was summarised for each study, categorised and coded accordingly to create a summary of evidence-based recommendations (box 1). box 1: evidence-based recommendations for motor skill interventions. results description of included studies database searches identified 2564 records with 89 added through snowballing and alerts. thirty-two duplicates were removed. title and abstract screening reduced the number for full article review to 130. a final number of 45 articles were included in this scoping review (figure 1). according to the nhmrc hierarchy of evidence (merlin et al. 2009), there were no studies included in this scoping review that qualified as a level 1 study given the absence of systematic reviews of only rcts. eight studies were graded as level ii with evidence from at least one properly designed rct. thirty-four studies were classified as level iii (1–3) studies, using pseudo-rcts, cohort studies and outcome-based studies with non-randomised allocation of concurrent controls, comparative studies with a historical control or interrupted time series without a parallel control group. a literature review that included only level iii studies was classified at level iii. three studies were case series, with pre-post or post testing, and were classified at level iv. a complete description of studies with assigned quality levels is available in online appendix 2. only two studies included in this review were conducted in lmic, namely south africa (ferguson et al. 2013) and iran (najafabadi et al. 2018). twenty-four studies were conducted in the united states of america, four studies each in canada and israel and three in the netherlands. the remaining studies were from japan (2), belgium (2), australia (2), and one each from finland and sweden. studies referred to a specific diagnosis or included more than one diagnosis. the diagnostic group most frequently referred to was dcd (14 studies). in 11 studies, children were described as having problems with motor skills, but not diagnosed, and the label of motor skill difficulties was assigned. studies including children with asd (10) and adhd (2) as well as those with developmental delay (11) or being at risk of developmental delay (6) were also described. other diagnoses included: down’s syndrome (2), sensory processing disorder (1), learning difficulties (1) and developmental language disorder (1). description of data relating to treatment interventions studies often referred to more than one intervention approach. the most common approach described was a visual-perceptual motor approach investigated in 30 studies. fifteen studies referred to a sensory integration approach and 13 to task-specific training. an indirect approach through training, advice, contributing to individual education plans and physical education (pe) was investigated in eight studies and a cognitive-motor approach in another seven studies. mastery and neuro-motor task training were investigated in four studies. the remaining studies included virtual gaming (3), direct instruction (2), approaches focusing on rhythm and timing (2), pharmaceutical intervention (2), equestrian therapy (1) and body function-orientated input (1). approaches are described in online appendix 2. all included studies reported to have had a positive influence on motor skills through means of various study designs. sixteen of the studies explored the effect of a specific approach or programme on the motor skills of children. eight studies investigated the effectiveness of services or programmes and focussed mainly on positive contributing factors. five studies investigated the effect of instructional and motivational aspects when implementing a programme. studies often reported on one approach to be more effective than another according to intervention implementation models or structural elements (6). one study investigated the effect of gender on motor skill intervention. one meta-analysis, three systematic reviews, two combined systematic reviews and meta-analyses and two other comprehensive reviews compared studies for a variety of reasons and described both positive and negative outcomes. intervention parameters such as timing and frequency of inputs according to each approach are described in online appendix 2. the total number of sessions over all named approaches varied significantly and ranged from 3 to 130 sessions with a mean of 24 and sd of 17 (24 ± 17). the duration of the intervention also varied and ranged from 3 to 40 weeks (15 ± 6). the number of sessions per week ranged from one to five sessions per week (2 ± 1). the session duration varied from 10 to 240 min per session (46 ± 17). the main facilitators of treatment in these studies were occupational therapists (ots) (16), followed by physiotherapists (pt) (5) or combined ot and pt input (4). in four studies ots/pts and teachers were co-facilitators. kinesiologists facilitated the treatment in three studies, educators (pe and class teachers) in seven and specialised therapists (e.g. equestrian or hippotherapy) in four. three studies did not mention who facilitated the sessions. intervention programmes were typically carried out in the school environment (17 studies), therapeutic setting (13) or at both (4). three studies mentioned home programmes as part of an intervention, whilst eight studies did not mention therapy venues. there was poor description of activities used in the interventions and authors were contacted through email to provide more detail (bazyk 2017). refer to online appendix 2 for detail of activities where these were reported. the data as described above was summarised in a proposed framework focussing on common features of motor skill interventions for pre-school children (figure 2). the framework enables one to find and plan motor skill intervention for a specific service or area by ‘filtering’ location, environment and resources. location refers to the geographical area (e.g. rural vs urban), environment to the conditions under which intervention is planned (educational vs therapeutic, diagnoses or identified difficulties, time, age group, etc.) and resources to funding, equipment and staff available. important additional information was categorised into the three areas of therapeutic input, interpersonal/social approaches and components of therapy input (box 1). figure 2: a proposed framework of components to consider for motor skill interventions planning for pre-school children. discussion to address the hidden disability of motor skills impairment that is experienced by young children with a range of other health conditions, we need to have a framework to inform the choice of approaches that will work best within their own context. this is particularly important when resources, including professional expertise, are limited. the proposed framework, as seen in figure 2, gives guidance on service and programme development in different contexts, whilst promoting evidence-based practice. we recommend that when developing programmes to address motor skill impairment in young children, professionals consider the treatment approach(es) to be used, the key role players available, how and where services will be delivered, the structure of the intervention programme and the contextually relevant activities that will be used during intervention. approaches used in the studies identified in this review varied, but results suggested some positive outcomes in all the studies. this correlates with three systematic reviews (eddy et al. 2019; hillier 2007; logan et al. 2012) that indicated that most interventions have positive outcomes. when looking at specific populations however, certain approaches may be more effective than others. sensory integration is shown to be effective for children with asd (iwanaga et al. 2014), whilst medication may benefit children who experience both motor skill difficulties and attention and concentration deficits (bart, podoly & bar-haim 2010). a systematic review of high-quality rcts investigating motor skill interventions for school-going children with dcd found that all effective interventions had a task-orientated approach, but also stated that even within the diagnoses of dcd, heterogeneity should be considered (preston et al. 2017). a playful, child-centred approach may have a positive influence on motor skill therapy outcomes (case-smith 2000; kirk & rhodes 2011; lahav, apter & ratzon 2008). for a diverse population with motor skill difficulties, the researchers theorised that a more eclectic approach is recommended to accommodate individual needs (mandich et al. 2001). occupational therapists, followed by pts and kinesiologists, were found to be the most prominent providers of therapeutic input. it seems to remain a specialist area of care involving a range of specific assessment and treatment approaches. teachers are often involved together with a therapist, dependent on the service delivery model. in this study, four main service delivery models are described, namely comprehensive ot services; integrated ot services in a school environment; ot consultation services to schools and service delivery by school assistants under supervision of pts. the level of resources regarding therapists, time and funding is important to consider when implementing best practice. in a low socio-economic area, a task shifting approach (world health organization 2008) may be indicated, where teachers are trained to facilitate an intervention with guidance and support from therapists. it should be kept in mind that not all role players in the treatment of motor skill difficulties were included in the review as studies are not available or not fitting the inclusion criteria. other factors that significantly impact on child development should also be considered (worku et al. 2018). for example, in areas with a high incidence of alcohol and drug use amongst adults, and high unemployment figures, the involvement of social workers may be beneficial. in rural communities, clinic nurses and doctors may also play a valuable role, whilst pediatricians and child psychiatrists play a role where medication is required (bart et al. 2010). from this review, it seems that most interventions occurred either in school settings or at therapeutic centers. programmes may also include home activities (hillier 2007). socio-economic factors, accessibility and therapeutic resources were influencing factors. therapeutic activities varied from general arts and crafts (parush & hahn-markowitz 1997), games, sport and gross motor apparatus (pless et al. 2000) to specialised sensory integration equipment (iwanaga et al. 2014) and virtual gaming (salem et al. 2012). one should also consider evidence from a study that suggests that a gross motor programme could have the same effect on fine motor skill development than a programme focusing on fine motor tasks (parush & hahn-markowitz 1997). although more evidence is needed, such a gross motor skill intervention may simplify the process whilst still offering the same benefits. looking at dosage parameters, evidence suggests that an intervention programme of 45 min twice a week for 3 to 4 months may be effective. the country where the studies were conducted should also be considered. conditions such as dcd, adhd and asd are, for example, clearly defined, and diagnostic pathways and treatment regimens are well mapped out within the unique health and education systems in countries such as the united states (cdc 2020) and the united kingdom (nice 2020). diagnostic and intervention pathways in lmic are less clearly defined and very little statistical information is available regarding developmental diagnostic groups. for example, no prevalence statistics are available regarding dcd or asd in south africa (lamb 2017). it is therefore difficult to focus an intervention programme to a specific diagnostic group when many children with dcd and asd remain undiagnosed, and many others may have comorbidities such as hiv and fas affecting motor skills development (olivier et al. 2016; smith et al. 2002). in lmic countries, the term ‘motor skill difficulties’ is also likely to include a wide range of difficulties that may differ from those reported in hics and thus the outcome of studies from hics should be interpreted with caution. the lack of levels i and ii studies (refer to online appendix 2) suggests a lack of strong evidence. more rcts and/or systematic reviews of rcts, concerning treatment interventions aimed at improving motor skills for pre-school aged children, are recommended to enable more informed decisions regarding best practice interventions for various settings. limitations research to date concerning motor skill performance in pre-school children and the effectiveness of treatment methods stems predominantly from hic. as only english published data were included from limited database in this review, unknown valuable data concerning interventions from developing countries not formally or yet published may exist. there is also little known about the effect of multidisciplinary early intervention collaboration. although the occupational therapy process seems to be crossing borders with physiotherapy and education, there is even less documented data about other supportive role players such as dieticians, speech and language therapists and psychology services. conclusion this study identified key concepts that may be associated with successful interventions for improving motor skills in pre-school children. the key concepts were used to assist in developing a proposed framework for intervention design and implementation in a variety of settings. this review and framework may be useful to guide the development of new intervention strategies specific to the needs of a community. the review highlights the need for further research within lmic and also with regard to other role players as part of the multidisciplinary team. acknowledgements the authors would like to acknowledge the librarians at the stellenbsoch univerity library for their assistance to track and obtain records competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions mrs van der walt conceptualised and designed the study, collected data and carried out the initial analyses, drafted the initial manuscript and reviewed and revised the manuscript. drs plastow and unger coordinated and supervised the study including conceptualisation and data collection and critically reviewed the manuscript for important intellectual content and reviewed and revised the manuscript. all authors approved the final manuscript submitted and agreed to be accountable for all aspects of the work. funding information the authors received no financial support for the research. data availability the data that support the findings of this study are available from the corresponding author, janke van der walt, upon reasonable request. disclaimer the authors hereby declare that the views expressed in the submitted article are their own and not an official position of stellenbosch university. references ajzenman, h.f., standeven, j.w. & shurtleff, t.l., 2013, ‘effect of hippotherapy on motor control, adaptive behaviors, and participation in children with autism spectrum disorder: a pilot study’, the american journal of occupational therapy 67(6), 653–663, viewed 27 november 2020, from: 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[p]aramount to a human rights perspective’, we can neither learn how intellectually impaired individuals experience the care quality, resources, and services they receive if not allowed to tell us; nor help raise these expert voices (london et al. 2011:3). we see that kittay (2009) finds it morally abusive when policies impacting intellectually impaired individuals are ‘formulated on the basis of the denial of the moral personhood of individuals who do not have a place at the table where their fates may be decided’ (2009:620). individuals may be intellectually or physically impaired, but it is their political and social environments that do the disabling. swartz (2010) explains that in the social model of disability, the impairment alone ‘is not sufficient for disablement to occur. what disables people – what makes people disabled – is how society responds to the impairments’ [my italics for emphasis] (swartz 2010:27-28; see also walmsley 2001). not being allowed to ask the opinion of intellectually impaired individuals on matters that affect them directly can be construed as disabling, and may amount to disablist practice. if located in emancipatory research, disability studies must explore ways in which individuals living with intellectual impairment can, as co-researchers, have some measure of control over studies that affect them directly (barton 2006; walmsley & johnson 2003; walmsley 2001). although the fundamental ethical principle of anonymising data might serve to protect the ‘welfare and dignity’ of participants (marzano 2007:418), not documenting their perception of dignifying experiences could silence a possible lack of these and constitute a disavowal of living and working with intellectual disability – an unacknowledgement that raises further ethical concerns (nussbaum 2010). how can lived experiences on the continuum of intellectual disability become known and knowable if the bodies these experiences are lived in cannot be named? what if unilaterally deciding to protect participant identities is not in their best interest...too ashamed to be named? shouldn’t anonymity be negotiated with participants as a power issue, something intersubjective work enables (swartz, van der merwe, buckland, & mcdougall 2011)? assuming that, because of weaker cognitive functioning, intellectually disabled adults lack the capacity to agree or decline to participate in research negates the right they have to inclusion and acknowledgement, and the right to claim the time and thinking of the enabled researcher (kittay 2009; sinason 2010). benefits of participation disability researchers emphasise the importance of moving studies about impaired persons from a third-person reporting style that continues to disable intellectually impaired voices as subaltern, toward counter-hegemonic discursive texts where the experience and expert voice of impaired individuals are at the core (dye et al. 2004; french & swain 1997; swartz et al. 2011; swartz 2010; walmsley 2004a, 2001). by continuing to take a ‘speaking for’ position rather than one of ‘speaking with’, well-meaning enabled researchers may unwittingly contribute to scientific silencing – further incapacitating already subdued voices. by co-creating counter-hegemonic disability texts, intellectually impaired individuals could ensure that disability studies are not dominated by enabled researchers and their agendas, or by issues that are only important to professionals (french & swain 1997; inglis & cook 2011; swartz et al. 2011). in helping to locate novel aspects within disability studies, intellectually impaired coresearchers could assist in preventing inclusive disability research from becoming marginalised (gilbert 2004; walmsley 2001). inclusive research could add depth and strength to data collection; involve participants in effecting political and social processes of change; acknowledge and credit participant opinions, ideas, and insights; and contribute to facilitating participant confidence and self-esteem (barton 2006; dye et al. 2004; gilbert 2004; inglis & cook 2011; stone & priestly 1996). excluding intellectually impaired individuals from research projects might deny them indirect benefits of pride in having their contributions credited; a sense of achievement and worth gained as coresearchers; intellectual stimulation; additional attention from various professionals; and gaining awareness of their capabilities (inglis & cook 2011; sinason 2010). obstacles to participation from the outset, the burden of the consent process must be formalised in a research proposal – the onus to obtain consent is on the researcher, not on the participant to provide it. obtaining participant consent from intellectually impaired individuals presents particular ethical challenges. a significant tension exists between ensuring that participants understand the nature and implications of their research involvement, while avoiding any form of coercion. iacano and murray (2003:49) note that there is ‘a need to protect vulnerable participant groups’, but that there also need to be ways of ensuring that ‘demands placed on researchers are not so restrictive as to preclude valuable research’ (see also marzano 2007). london and colleagues (2011) highlight the dilemma of restrictive ethical approval processes on research in their example of how various regulatory frameworks specify the nature of information that must be included and understood in a consent form (see also gilbert 2004). although understandable from the perspective of political and human rights redress, ‘south african regulatory requirements [department of health 2004] specify 27 elements that must be included in a consent document ... [i]n the usa, federal regulations require a minimum of eight items. given these disparate criteria, it is ... difficult to establish an acceptable minimum standard of understanding’ (london et al. 2011:3). a reviewer of an earlier draft of this article pondered the need to educate ethics committee personnel on conceptualising intellectual disability and on current thinking around capacity. consent to participate in a research project ‘is only binding if it was given freely, voluntarily, and without undue influence [coercion]...[p]sychologists must ensure that the information is offered at a level which is in accordance with the client’s cognitive ... abilities’ (allan 2011:75). the world over, consent is valid if research participants have adequate information to make an informed decision; understand the information at a cognitive level; appreciate the situation and the consequences of the decision at an emotional level; have the ability to make a rational decision; make the decision freely and voluntarily; and can communicate their decision (allan 2011; carr, o’reilly, walsh, & mcevoy 2010). meeting these requirements might pose significant challenges to the inclusion of intellectually impaired adults – even if such participation might be emancipatory and empowering (barton, 2006; french & swain 1997; london et al. 2011). but if we read this correctly, criteria relating to providing consent need not exclusively be measured by (a lack of) capacity, nor by verbal ability. the current concept of consent is based on a dichotomous categorisation: people either have or do not have capacity to consent (dye et al., 2004). a primary concern in the context of intellectual disability research is that participants may not understand what their involvement in a study entails, and are then unable to meet the criteria for providing informed consent (allan 2011; dye et al., 2004; london et al., 2011). individuals with intellectual impairment may find it difficult to understand what research means, as well as the consequences of consenting or declining to participate. one reviewer of an earlier draft of this article brought to our attention, with helpful examples, the view that capacity to consent can vary according to the issue being addressed. for some research topics, a person could be deemed as having capacity to consent (e.g. regarding their views on where they live) whereas for other topics this is not possible (e.g. participating in the trial of an experimental drug). in research involving child participants, good practice implies gaining children’s assent to participate in addition to the requirement of parental legal consent. to avoid the exclusion of potential participants with lower levels of comprehension and poorer ability to understand their involvement in research, and without referring to such persons as children, assent procedures can be initiated once consent is obtained from an authorised proxy or legal guardian. although obtaining consent from intellectually impaired participants should always be attempted first, the process can be conceptualised as being on a ‘sliding scale’ relative to the nature of impairment. participants able to consent might be of ‘lesser’ intellectual impairment than participants able to assent (ockert coetzee, personal communication at alexandra hospital, 2012 march 2). this can be illustrated as follows: process of participation begins here consent assent mild moderate severe profound level of intellectual impairment as far as the argument for informed consent goes, it needs to be recognised that ‘information alone is an inadequate predicate to meaningful choice’ (grisso & appelbaum 1998:14, in cameron & murphy 2006). ill-explained options can be disabling – perhaps it is not so much the patient’s ability to consent that is most pertinent, but the researcher’s ability to explain options in a way that facilitates opportunities for making autonomous choices. it remains the researcher’s task to ensure that participants have been fully informed, that they know they have a choice to decline participation, are giving informed consent to participate, and understand the consequences of deciding on non-participation (allan 2011; inglis & cook 2011). obtaining consent from intellectually impaired research participants should be a careful and lengthy process. allan (2011) informs that, in order to communicate with participants about their involvement at a level that is non-discriminating and understandable without being derogatory, participants must have ‘enough time to make the decision’ and be afforded opportunities to ask questions and consult other people if they wish to (2011:75). in a similar vein to the ongoing monitoring of research ethicality post-approval by ethics committees as posited by marzano (2007), cameron and murphy (2006) explain that consented participation is an ongoing process and not something established only at the beginning of contact. the greater participant control over consent at any point in the research process, the less likely it would be that research infringes the rights of participants with intellectual impairment (cameron & murphy 2006; stone & priestly 1996). but if one takes a position that it is unethical to exclude intellectually impaired individuals from participating in research, the formulation of solutions to difficulties regarding inclusion remains the researcher’s responsibility. significance of work excluding intellectually impaired individuals from participating in research based on the argument of limited capacity can be unethical and a human rights violation. as coconstructors of studies that may affect them directly, adults living with intellectual impairment need not be excluded as coresearchers. by virtue of their expertise on the topic, their voice may stand in public and scientific service on disability matters. conclusion top ↑ excluding intellectually impaired individuals from participating in research based on the argument of limited capacity can be unethical and a human rights violation, especially in cases where effective measures have been put in place to assist eager individuals meet criteria for informed consent (cameron & murphy 2006; gilbert 2004; inglis & cook 2011).in upholding ethicality when considering intellectually impaired participants as coresearchers, there are a number of criteria to be mindful of. these include planning for a prolonged and continuous process of obtaining consent and assent; adapting information sheets and consent procedures appropriately whilst avoiding deprecating use of language; assessing each potential participant’s language skills in order to gauge individual levels of understanding; and communicating in participants’ home language(s), or having present a person familiar to the participant who can assist with translation and communication. of further importance would be the ongoing conceptualisation and documentation of consent (and refusal); and establishing ways of initiating, maintaining, and terminating the research relationship. care workers’ awareness of the research relationship also needs to be considered. ultimately, the voluntary nature of participation and the participant’s right to make an autonomous decision about continuing or terminating involvement is paramount. apart from the core ethical principles of anonymity, confidentiality, and informed consent (swartz et al. 2011), kittay’s (2009) ‘fundamental ethical precepts’ of epistemic responsibility or empirical adequacy (know the subject participating in the research), and epistemic modesty (know, and admit to, what you don’t know) should also be considered. refreshingly, researchers might do well to acknowledge and tolerate their own ignorance and lack of knowledge (see walmsley 2004b). every researcher ‘is still a person with [an own] stock of moral values and norms to be safeguarded’ and, for that matter, to be guarded against in harmony with established ethical principles (marzano 2007:430). ethical research practice should include peer and research supervision in addition to following relevant professional and statutory ethical codes (e.g. ethical rules of conduct for practitioners registered under the health professions act [no. 56 of 1974]). but despite containing codes, professional spaces, and guidelines, disability researchers will be required to embrace their ‘fear associated with the unknown and [be] willing to be vulnerable – not all-knowing [or] propped up by rules ...’ (swartz et al. 2011:4). a disability research space will, as marzano (2007) notes, always force researchers to come to terms with their own identity, to reflect on the nature of the social relations that they construct in the field, on the distribution of power within these, and especially on the legitimacy of their observations. acknowledgements top ↑ the authors acknowledge the outside reviewers and editors for their helpful suggestions. this paper did not rely on any sources of funding. competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this article. authors’ contributions c.c. (lentegeur psychiatric hospital, university of stellenbosch and intellectual disability services) principal author, o.c. 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l., 2010, able-bodied: scenes from a curious life, zebra press, cape town. swartz, l., van der merwe, a., buckland, a. & mcdougall, k., 2011, ‘producing boundary-breaking texts on disability issues: the politics of collaboration’, disability & rehabilitation 2011, 1–8. tronto, j. c., 2010, ‘creating caring institutions: politics, plurality, and purpose’, ethics and social welfare 4, 158–171, viewed 6 january 2012, from http://dx.doi.org/10.1080/17496535.2010.484259 walmsley, j., 2001, ‘normalisation, emancipatory research and inclusive research in learning disability’, disability & society 16, 187–205, viewed 5 june 2012, from http://dx.doi.org/10.1080/09687590120035807 walmsley, j., 2004a, ‘involving users with learning difficulties in health improvement: lessons from inclusive learning disability research’, nursing inquiry 11, 54–64, viewed 5 june 2012, from http://dx.doi.org/10.1111/j.1440-1800.2004.00197.x walmsley, j., 2004b, ‘inclusive learning disability research: the (nondisabled) researcher's role’, british journal of learning disabilities 32, 65–71, viewed 5 june 2012, from http://dx.doi.org/10.1111/j.1468-3156.2004.00281.x walmsley, j. & johnson, k., 2003, inclusive research with people with learning disabilities: past, present, and futures, jessica kingsley publishers, london. footnotes top ↑ 1.no person, nor the state, may unfairly discriminate directly or indirectly against anyone on one or more grounds including ... disability (rsa 1996).2.everyone has the right to freedom of expression, which includes freedom to receive or impart information or ideas and academic freedom and freedom of scientific research (rsa 1996). 3.everyone has the right to have access to health care services (rsa 1996). 4.everyone has the right to bodily and psychological integrity, which includes the right not to be subjected to medical or scientific experiments without their informed consent (rsa 1996). abstract introduction methods results discussion conclusion and way forward acknowledgements references about the author(s) surona visagie centre for rehabilitation studies, stellenbosch university, cape town, south africa rebecca matter school of public health and family medicine, university of cape town, cape town, south africa george kayange southern africa federation of the disabled (safod), gaborone, botswana mussa chiwaula southern africa federation of the disabled (safod), gaborone, botswana mark harniss department of rehabilitation medicine, university of washington, washington, united states callista kahonde centre for rehabilitation studies, stellenbosch university, cape town, south africa citation visagie, s., matter, r., kayange, g., chiwaula, m., harniss, m. & kahonde, c., 2019, ‘perspectives on a mobile application that maps assistive technology resources in africa’, african journal of disability 8(0), a567. https://doi.org/10.4102/ajod.v8i0.567 original research perspectives on a mobile application that maps assistive technology resources in africa surona visagie, rebecca matter, george kayange, mussa chiwaula, mark harniss, callista kahonde received: 30 aug. 2018; accepted: 02 feb. 2019; published: 22 aug. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: access to assistive technology (at) is poor in african countries because of a lack of knowledge, resources, services and products. a mobile application (app), the at-info-map, was developed to map at availability in southern africa. objectives: this article aimed to describe users’ and suppliers’ perceptions of the at-info-map app. method: qualitative data were collected in zambia, botswana, malawi and lesotho, through nine focus group discussions with 72 participants. participants included at users, at suppliers and representatives of disability organisations. data were thematically analysed. results: two broad themes, that is, usefulness of the at-info-map application and technical issues and content, emerged from the data analysis. subthemes under usefulness focused on the importance of using current technology, convenience of the app, the need for accuracy, responsiveness of supplier to user’s needs, influence on at market and how the app creates an opportunity for networking. challenges to download and navigate the app, the need for training in its use, exclusion of those not literate in english and those with visual impairments were subthemes under technical issues and content. conclusion: the app was perceived as an important step to increase access to at for persons with disabilities in less resourced settings. the challenges that emerged from the data analysis have led to the development of a web-based system that will complement or replace the app and improve at information provision. however, the information provided by the app and website is still only a partial solution to improve at access in southern africa. keywords: assistive products; assistive technology, disability; mobile application; low resourced settings. introduction assistive technology (at) is defined as: any item, piece of equipment or product, whether it is acquired commercially, modified or customized, that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities. (world health organization [who] 2011:101) assistive technology can compensate for loss of function caused by various impairments, for example sensory deficits, cognitive impairment and paralysis. it can enhance participation in social roles and ultimately quality of life (who 2018). as shown by tebbutt et al. (2016), at has a crucial role to play in ensuring that persons with disabilities are not left behind in the quest to achieve the sustainable development goals. internationally, the who is placing a strong focus on the provision of appropriate at services and products through the global cooperation on assistive technology (gate) initiative (who 2018) and the inclusion of at in the rehabilitation in health systems document (who 2017). however, the majority of people from developing countries who need at do not have access to it (matter et al. 2017). for those who do have access, the at is often not a lasting solution because of the lack of repair and replacement services (visagie et al. 2016). the need for at in africa is also on the increase as population aging occurs (garçon et al. 2016), non-communicable diseases increase in prevalence (mayosi et al. 2012), people live longer with the sequela of hiv (brothers et al. 2014) and trauma is still ever present (mayosi et al. 2012). in africa, specifically, a myriad of challenges related to a lack of funding, knowledge and awareness, resources, services and products hamper access to at (harniss, raja & matter 2015; matter et al. 2017; visagie et al. 2016). mhealth, ‘the use of mobile technologies for health related activities’, is rapidly expanding throughout the world (vesel et al. 2015:1684). service provision and management of complex conditions, such as non-communicable diseases (opoku, stephani & quentin 2017) and palliative care (allsop, namisango & powell 2018), benefited from mhealth applications in africa. mobile phone applications or mhealth applications have the advantage of reaching large populations in different geographical areas across gender and social divides (vesel et al. 2015). it connects users to services that were previously unavailable to them or were only available through substantial effort in terms of travel, expenses and waiting times (abaza & marschollek 2017; opoku et al. 2017; vesel et al. 2015; watkins et al. 2018). mhealth applications can have various purposes, including self-diagnosis and diagnostic support (abaza & marschollek 2017; vesel et al. 2015), marketing of services (vesel et al. 2015), exercises, education and counselling (abaza & marschollek 2017; allsop et al. 2018; vesel et al. 2015), health status monitoring (abaza & marschollek 2017) and adherence to management regimes (abaza & marschollek 2017; allsop et al. 2018; vesel et al. 2015). further applications include emergency medical response (abaza & marschollek 2017; vesel et al. 2015), drug supply chain monitoring (vesel et al. 2015), transfer of funds (vesel et al. 2015), maintaining medical databases (abaza & marschollek 2017; allsop et al. 2018; vesel et al. 2015) and consultations between healthcare providers (abaza & marschollek 2017; allsop et al. 2018; opoku et al. 2017; vesel et al. 2015; watkins et al. 2018). even so, mhealth does face a number of challenges. this includes network fees (allsop et al. 2018; vesel et al. 2015; watkins et al. 2018), low literacy levels of users (krah & de kruijf 2016; watkins et al. 2018), lack of evidence of its long-term impact on health indicators (opoku et al. 2017; vesel et al. 2015), poor infrastructure (low ownership of smart phones and poor internet access) in developing countries (allsop et al. 2018; vesel et al. 2015; watkins et al. 2018), privacy (allsop et al. 2018; krah & de kruijf 2016; vesel et al. 2015; watkins et al. 2018), security (allsop et al. 2018; vesel et al. 2015) and challenges with interoperability between systems (vesel et al. 2015). in addition, sustainability of programmes was also flagged as a challenge. this was especially true for programmes that were initiated through external donor funding without involvement of government in developing countries (allsop et al. 2018; vesel et al. 2015). in 2016, the southern african federation for the disabled (safod) in conjunction with partners from the university of washington (usa), stellenbosch university (south africa) and dimagi (https://www.dimagi.com/) received funding from the google impact challenge: disabilities (https://www.google.org/impactchallenge/disabilities/) to develop an mhealth smart phone application (app) to map at availability in southern africa. the purpose of the at-info-map app was to assist users and providers of at in locating sources of at such as private companies and non-governmental organisations (ngos), and to show gaps in the availability of at in southern africa (visagie et al. 2018). the app had the capacity to be used offline once installed, an advantage in settings, such as southern africa, where resources and infrastructure are limited (allsop et al. 2018; vesel et al. 2015; watkins et al. 2018). scoping and design, led by dimagi (https://www.dimagi.com/), found that data in the app should include information about at suppliers and disability service organisations (visagie et al. 2018). the app was first piloted and refined in botswana in 2016 and early 2017 (visagie et al. 2018). after refinement the app was implemented in four other countries in 2017 (zambia, south africa, malawi and lesotho). implementation in the last five safod countries (angola, mozambique, namibia, swaziland and zimbabwe) started in april 2018. implementation involved hiring and training local administrators within each country, who then identified and entered data about at suppliers and disability service providers. the southern african federation for the disabled provided training and monitoring of country-level data entry by administrators. data collection and validation are ongoing to ensure that at supplier and service information is accurate and coverage is comprehensive in all 10 countries. lack of monitoring and evaluation was flagged as a major issue in many mhealth programmes (vesel et al. 2015). to partially address this challenge within the current programme (at-info-map), user feedback was sought through focus group discussions. this article aims to describe perceptions of the use of the at-info-map app through information that was gathered from key at stakeholders during routine monitoring after rollout in the first five countries: botswana, zambia, south africa, malawi and lesotho. methods data collection and analysis were done according to a qualitative descriptive design. data were collected using nine focus group discussions in the five southern african countries where the app has been implemented in 2016–2017, that is, zambia, botswana, malawi, south africa and lesotho. data from the south african focus group had to be excluded as challenges were experienced with collaboration with safod representors in that country that resulted in insufficient information on the data collection process. (no records were kept of the focus group participants’ demographic details, and quotes were not linked to individual participants in the transcript.) focus group participants were conveniently selected from those who received training in the use of the app during the implementation of the at-info-map in each country. the southern african federation for the disabled and their affiliates within each of the four countries identified and recruited at stakeholders to participate in the implementation trainings, totalling 352 individuals (zambia: 112, botswana: 67, malawi: 86, lesotho: 87). assistive technology stakeholders included people with disabilities who used at, suppliers of at and representatives from ngos that advocate for and/or serve people with disabilities. data were collected in english as that is the official medium of communication in all five countries and the language used in the app. the focus group discussions were guided by a schedule developed by the programme’s leadership team. the schedule included the following main concepts: feasibility of the app (usefulness, challenges, benefits, accuracy and completeness). technical issues (downloading and installation, instructions, data access). possible outcomes of the app (awareness, at demand, at supply). general dis/satisfaction with the app. suggestions for change. general at information (awareness and knowledge, policy implementation, supply chain, procurement and provision, opportunities, interventions). the southern african federation for the disabled took the lead in the monitoring process and employed and trained focus group discussion facilitators, who were members of safod. focus group discussions were audio recorded and transcribed by a member of safod. inductive thematic analysis was done by the first author. she familiarised herself with the data through multiple readings of printed copies of the transcriptions. through notes in the margins she started to identify like codes. these codes were then organised into meaningful groups that became subthemes or an overarching theme that encompasses various subthemes. these themes were reviewed by co-authors to ensure clarity, and were then finalised, defined and named (braun & clarke 2006). trustworthiness convenient sampling negatively impacted credibility of the findings. however, the large number and heterogeneousness of participants should offset this and enhance credibility. in addition, data saturation was achieved. furthermore, both positive and negative findings were presented. confirmability is strengthened by basing themes on the perceptions of participants and supporting them with narrative examples as done in this article. the article provides information on the methods used and should allow other researchers to replicate the study. the information on methods and the setting should also guide an informed decision on whether findings can be transferred to other similar settings (given 2008). ethical considerations the monitoring process received ethics approval through university of washington human subjects division (hsd) (study00003701). there were no risks to participants. participation in the focus groups was voluntary in nature, and verbal informed consent was obtained. this included consent to the use of an audio recording device. participants of individual focus groups entered into a group contract. all information is treated as confidential, was anonymised and encrypted data storage was used. data were stored on password-protected computers. during dissemination no identifying particulars will be used. participants were reimbursed for travel expenses, and refreshments were provided. results participants nine focus group discussions took place in the four countries from december 2017 to january 2018, including 72 participants in total (see table 1). table 1: characteristics of focus group participants per country. table 2 shows that focus group participants had experience with a wide range of at types, both as users of at and organisations or companies that supply at. the majority of participants (n = 29) had experience with at for physical or mobility impairments. table 2: background information related to impairments and assistive technology experience of participants. themes data were analysed across the different focus groups and are presented across groups and countries. opposing opinions are brought to the fore, and suggestions for improvement are presented in an integrated fashion as relevant to each subtheme. two broad themes emerged from the data: usefulness of the at-info-map application technical issues and content subthemes were identified through an inductive process under each of the two main themes and are presented in table 3. table 3: themes and subthemes from the data. theme i: usefulness of the at-info-map application focus group participants from all four countries were enthusiastic about the app. provision of information for persons with disabilities, who are often excluded or marginalised, through the use of current technology was seen as a progressive step. ‘i think the coming of this app is quite revolutionary because in the past we had no digital platform where suppliers of various ats and devices can advertise and display their products and services.’ (participant 1, zambia, man, supplier of at for vision) ‘…it’s quite amazing that even here in botswana people are up to date with modern technology.’ (participant 1, botswana, man, physical disability) the provision of information on different at all on a single platform on your phone was seen as very convenient. ‘for persons with disabilities, movement and transportation is a challenge, the app will minimize their movement while they have access to information on their phones. this will be convenient, to call service providers and suppliers and ask them directly what you are looking for.’ (participant 11, botswana, man, albinism) having all products on a single platform will save time and money because it reduces the need to travel. ‘this will ease mobility and reduce time wastage in search for suppliers and services in as far as helping people with disabilities is concerned.’ (participant 17, malawi, woman, ngo representing children with disabilities) ‘…it will help me in getting quotations easily without having to go to suppliers one by one. i will just call and enquire and it will reduce the cost associated with travelling from one supplier to supplier.’ (participant 3, botswana; man, physical disability) in this regard, the information on location of suppliers is valuable as that shows the user where devices can be secured closest to him or her. ‘…it also makes it easier to locate and determine the actual distance between where the person is and where service provider is. so i think that part particularly is great innovation.’ (participant 4, zambia, man, supplier of mobility devices) participants from lesotho had challenges in identifying locations on the app because it is not a common practice in lesotho to name streets. ‘the challenge we face is the unknown streets in lesotho, most streets are not seen within the country [on the app].’ (participant 14, lesotho, man, physical disability) participants were adamant that the information provided must be accurate and complete, a quality that some participants felt the app showed. ‘i believe it’s accurate because earlier on we noticed the cheshire foundation botswana and ambrose academy they are just nearby and the location that they were showing they are approximately correct…even that ones that are outside botswana the kilometers that we are getting here are exact.’ (participant 9, botswana, man, physical disability) however, a participant from lesotho differed. ‘there are many companies that are left behind in lesotho. i have realized that organisations and institutions that i already know are not in the app.’ (participant 11, lesotho, man, physical disability) participants emphasised the importance of regular updating of the app to keep information current. they felt that dated information will quickly limit the use and positive experience of the app. ‘sometimes you may lose trust in using them for example if you search for a product which you wanted you find it there and then you go to the suppliers you find that they don’t have it you might lose interest of using the application because you will be thinking that even the next time when you pick a product when you go there you won’t find it.’ (participant 15, zambia, woman, physical disability) participants felt that another advantage of the app is that it might improve the responsiveness of suppliers as it may facilitate opportunities for suppliers to receive feedback from the users. suppliers thought that through the app they will become more sensitive to demands and what specific devices are needed and that they can use this information to provide more appropriate services. ‘on the supplier side, the app i think will be able to provide information on the demand for different products so that the supplier can be able to position themselves in a way that whenever the products are needed the supplier will be able to meet the demand.’ (participant 8, zambia, man, supplier of mobility devices) the app might also assist with sourcing components and thus enhance supply. ‘it will really help us to be able to access information on the mapping from other stakeholders…you find that certain components will not be found here in zambia but you can get these components maybe in the nearest countries. but in the previous days, we used to fly all the way from zambia to kenya just to go and get caster wheels. but as it is i’ve just seen from the information which has just been provided that almost the whole southern region here is covered.’ (participant 6, zambia, man, supplier of mobility devices) the app will allow travellers with disabilities to source services as needed. ‘as the app is in southern african countries, this gives people with disabilities travelling to these countries a much greater access to information of where they can find services and supplies when they need it.’ (participant 8, botswana, woman, health promotion and education provider) many participants thought the app will facilitate growth in the at market through increasing awareness on available at and the demand for at. ‘as more people learn more about the app and start using it, finding information about different kinds of at, the demand of at will increase.’ (participant 9, botswana, man, physical disability) ‘for the suppliers, it will increase the market share…once your market share has increased, meaning even your income has to increase. again, once your products are selling like hot cakes, there is a likelihood that you have to expand for instance; you have to expand to other provinces or districts…even increase employment opportunities in our respective organisations or companies.’ (participant 5, zambia, man, supplier of mobility devices) the app creates a platform for networking between suppliers and users as well as suppliers with each other. ‘the app will bring organisations, suppliers and service providers together and this will make it easier for a local malawian.’ (participant 18, malawi, man, supplier of at) ‘i think this platform will also help service providers to be also interacting in between themselves. that will also help national development because they will be exchanging ideas of which i’m sure more services will be coming in and more other devices which may be ordered or made available to our service beneficiaries.’ (participant 9, zambia, man, supplier of at for vision) ‘it’s going to benefit our organization in so many ways. through this app, there is a possibility that we can identify other organizations outside the country that work on raising awareness and chances of networking and collaborating. the app basically is a platform to find networks and partners.’ (participant 9, botswana, man, physical disability) users made some suggestions for improvements to the app. the first was the inclusion of a toll-free phone number with other supplier information. ‘also those providers if they can provide us maybe with a toll free line… because if we have a toll free line it will be easy for us to access this even if you don’t have talk time.’ (participant 11, zambia, woman, physical disability) participants also felt information could be enhanced through the addition of approximate prices and pictures. ‘what is important there is that they need to indicate the approximate prices so that you can also start budgeting before you even go there or you start even calling them.’ (participant 17, zambia, man, sensory disability) ‘i think they need to work around on the interface of the application, i like the icons they are quite simple and to the point, but maybe if they could add a little colour to the interface.’ (participant 18, zambia, man, caregiver of person with physical disability) a search function that will show all services in a specific country was suggested. ‘so it would be far much better if these organizations can be categorized in countries e.g. botswana, zambia, etc. another point is that, when maybe i want to go to zambia for a visit, and i want to access the orthopedic and prosthetics services, how will i know if the orthopedic and prosthetics services information is from zambia because they are not categorized according to country.’ (participant 9, botswana, man, physical disability) theme ii: technical issues and content technical issues caused major challenges. some participants felt the app was easy to download and install. ‘it’s easily installed and easily accessible despite the fact that it asks some usernames and password to be use but those is very short usernames and password… it’s just easy password, all in all, easily installed, easily accessed and it’s not complicated, you just get what you want easily.’ (participant 9, botswana, man, physical disability) however, many had trouble with this. ‘i failed to install the app easily especially the code.’ (participant 11, lesotho, man physical disability) participants questioned the need for a password. ‘after downloading the app, it needs a code and a password to be running. this is a challenge since many people are not well at remembering everything. these two should be removed for easy access.’ (participant 16, malawi, man, ngo) ‘the main challenge is the installation codes and username and passwords that are already preconfigured. though the username and password are easy, simple and quick to remember it will be difficult to encourage others to download and install the app as it will require the installation codes which are not accessible on google playstore. this will discourage more people to download and install the app.’ (participant 8, botswana, woman, health promotion and education provider) once downloaded some participants felt the icons and navigation were intuitive. ‘the instructions are very clear, very clear indeed. the app itself is quite easy to use. everything is quite clear, for as long as somebody is literate. you just follow instructions.’ (participant 1, zambia, man, supplier of at for vision) however, not all participants could navigate and use the app without challenges. ‘after that [remembering the password] now the problem again is to review where you can enter the information. that’s the challenge which i’m facing because i tried last week, the whole week i haven’t got anything up to now, then the system tells me its corrupt.’ (participant 4, zambia, man, supplier of mobility devices) ‘the only challenge is that the app is advanced and needs people who are highly literate who have the technical knowhow on how phone applications work.’ (participant 1 malawi, man, journalist focussing on disability issues) participants agreed that training on the app should continue. ‘we need frequent trainings on the app, and almost the whole country should be reached by such trainings.’ (participant 12, malawi, women, student who used the app) participants felt persons with disabilities have an important role to play in ensuring that the app is useful and sustainable. ‘the way it can be sustainable is to engage more dpos to take part in the project. for the app to be able to be sustained, there is need to be an awareness and education regarding at. when embarking on the awareness phase, collaborating and including people with disabilities is very important, because they will be the one to able to speak better on it because they will be the frequent users.’ (participant 9, botswana, man, physical disability) terminology used seemed easier to follow than in earlier versions because much fewer challenges were identified in this area than with the pilot study (visagie et al. 2018). ‘it easy and understandable.’ (participant 11, botswana, man, albinism) two participants still mentioned that ‘eating and drinking’ can be confusing as people might think it refers to eating places instead of adaptive eating and drinking devices. ‘when entering data into the app we might see so many information like eating and drinking, which does not mean we are going to find food and drinks but all the facilities (devices) that can help persons with disabilities to eat and drink if in need of that.’ (participant 3, lesotho, woman, intellectual disability) the inclusiveness of the app was criticised. participants felt that people who are not fluent in english were excluded. ‘language barrier when using the app, i sometimes need someone who understand the english language to help me.’ (participant 15, lesotho, man, physical disability) they suggested that the app is translated into african languages. ‘the information and the questions are fair to understand but since many malawians understand their mother tongue language if the app should translated into chichewa the language every malawian understands clearly.’ (participant 6, malawi, woman, disability) ‘we think we have to add our language so that we can use it easily. we propose that google must translate english to african languages.’ (participant 19, lesotho, man, hearing impairment) those with visual impairments were also excluded. ‘however, as a person with visual impairment, like when it comes to the device, like the phone which accepts this application is not user friendly to me hence it poses a challenge that i can be able to use because these phones are using touch screen they don’t have keys that i will be able to use. then, what makes it more difficult is because icons and dialogue boxes, these are graphics hence i will not be able to see them so i can click maybe on delete when i am not supposed to delete. if it can be made easier even the phones that have keys can be able to accept the product itself. then like it was said on these other icons where you just have a person on a wheelchair without the wordings it becomes a challenge even when you’re able to use a computer, as persons with visual impairment we use key strokes or shortcut keys. so for me to locate that particular picture where the software maybe which i may be using on that particular phone cannot even read or describe the picture which is appearing on that particular icon, it will not be user friendly but it’s a very good product what we need to have is it being made more accessible that it breaks the barriers which are there.’ (participant 17, zambia, man, sensory disability) some participants felt that not all could afford android phones and that a similar app for phones with keypads and/or computers will enhance access. this will also allow better access for persons with visual impairments. ‘looking at our status in botswana mostly for people living with disabilities, most of us are not working, most of us are not well educated, meaning most of us don’t have smartphones, if you looking people living in rural areas they only have simple phones which is not compatible with commcare [platform of at-info-map app].’ (participant 11, botswana, man, supplier of mobility devices) ‘malawi is a developing country and many people don’t own smart phones and this is a big challenge for the app to work in the country.’ (participant 4, malawi, man, disability) it was further suggested that mobile service companies could help by providing smart phones in exchange for marketing. ‘how are you working with for instance the mobile service providers and the shops that are selling these phones, maybe we can have some of the phones that can accommodate this same software and make their phones advertised on this same platform so that we can know that maybe its mobile city that is selling a mobile phone of this nature, we can rush there as quick as possible so that we can be able to access this application because without a phone i will not access these services easily. so if those people who are this particular business are informed and educated about this product they will also want to market to us and go into a program where we can maybe make it flexible to those who can be able to pay for such kind of phones.’ (participant 17, zambia, man, sensory disability) the fact that the app can be used offline once downloaded was seen as a big advantage and cost saving. ‘something i like the most about this application is you can use it offline most of the times once installed. all you need is interval updates maybe every after a week or two just to be updated with the new information being uploaded.’ (participant 19, zambia, man, intern at zambian federation for the disabled) however, some still felt that even the data needed to download the app might be too much. ‘data in botswana is very expensive, it will be a very big challenge and it will be problematic in using the app.’ (participant 7, botswana, woman, social worker) ‘on the issue of data consumption, app developers should think outside the box in coming up with possible solutions for the app to be downloaded for free. many malawians are poor and earn as low as less than a dollar a day and can’t afford buying a bundle for the app download.’ (participant 7, malawi, man, supplier of at) discussion findings showed an overall positive response to the at-info-map app, and usefulness for at users, suppliers and ngos. however, improvements to the app design and continual system maintenance are required to ensure broad uptake and sustainability. similar to previous studies (allsop et al. 2018; vesel et al. 2015; watkins et al. 2018), focus group participants identified current and potential future challenges with the at-info-map app, and barriers to using mobile applications in southern africa like the cost of smart phones and data. app challenges, such as difficulty logging in, clarity of some at icons, lack of full accessibility by people with visual impairments and lack of translated versions in multiple languages, were consistent with the findings in the evaluation of the pilot phase of the project (visagie et al. 2018). while many issues identified during the pilot phase were addressed in the final version of the app, these findings showed that improvements were not sufficient to ameliorate usability and technical issues for all users. improvements implemented by safod included (1) developing a portuguese version of the app; (2) testing with talkback, a built in screen reader on android phones, to ensure data entry and data searching were accessible to persons with visual impairments; (3) reducing data demand of the app and (4) creating training resources such as manuals and online videos to assist app access and usage, and educate the general public about at. shortcomings include that the app is not translated for any indigenous language within southern africa, and that not all contents (i.e. icons) are fully accessible to people with visual impairments. in addition, some focus group participants pointed out they still experienced technical challenges such as installing and navigating the app, after having received in-person training on the app. the cost of phones and data will continue to be a major challenge to broader uptake. the cost of data is indeed high in the study countries and southern africa in general, varying from $6.6 (us) in malawi to $12.6 (us) in zambia for 1 gb (ramp index 2017; https://businesstech.co.za/news/mobile/185941). furthermore, in agreement with current findings, access to smart phones and stable internet connections are not given in southern africa (opoku et al. 2017). the two major interrelated concerns expressed by participants about the future of the at-info-map app were ensuring accuracy of data and sustainability. those concerns are not unique to this project, and ongoing funding is required to address these issues. the caution that information provided on the app must be accurate and regularly updated is an important one that must be heeded as opoku et al. (2017) found accuracy of information to tie in with sustainability of apps. currently, verifying the correctness of data on the app is achieved through contacting suppliers or service organisations via phone, email or in person. verifying records is a time-intensive process that will be costly in the long term. therefore, safod is exploring ways to incentivise suppliers and organisations to update their own information annually. sustainability of the app and web-based system also involves ongoing maintenance and possible further iterations in response to a wide range of user needs. some focus group participants had the expectation that specific products could be sourced directly through the app (i.e. the reference to finding products, and the suggestions that pictures and prices are added). currently, the app cannot support this level of detailed information. it is not clear if these participants did not understand the type of information available in the app, or if their feedback solely aimed to inform future improvements. another expectation of participants was that the app will provide at suppliers with information on what products are in demand and that this aggregated information will increase sales of at. however, users of at often do not purchase directly from suppliers because at services or rehabilitation specialists are required to access many types of at (e.g. hearing aids, wheelchairs, prosthetics) (smith et al. 2018). furthermore, there is an overall lack of funding for at in southern africa, through inadequate public financing and inability of users to pay. lack of financial resources among people with disabilities in developing countries has been well documented (hanass-hancock et al. 2017; mitra, posarac & vick 2011), and the limited at available is often subsidised through governments and ngos (visagie et al. 2016). for these reasons, the estimates of at demand generated through the app will not automatically translate into increased sales. despite the challenges and limitations with the current app, many focus group participants found value in the data collected and were enthusiastic about the potential for this information system to facilitate networking and growth in the at sector in southern africa. participant feedback validated the first objective of the at-info-map – to assist users and providers of at to locate at. for example, some participants found the geographical mapping feature useful in saving time and money in locating at suppliers of closer proximity. the second objective – to show gaps in the availability of at in southern africa – was mentioned in focus group discussions in terms of assessing unmet demand for suppliers, but not as a tool for informing advocacy or policy-making. as the first attempt to create a regional information system that compiles data on at suppliers and disability service organisation, the enthusiasm may also reflect approval of, and the broader vision of, the at-info-map to increase access to at through mapping availability. however, the app itself has much room for improvement, and ongoing funding is required to ensure sustainability of the system. it is worth noting that similar country-level or regional at data systems, such as assistive technology data-denmark (https://hmi-basen.dk/en/) or european assistive technology information network (http://www.eastin.eu/en/searches/products/index), are government funded and integrated into the public at systems. these more developed and publicly supported systems offer more detailed at information such as product specifications and pricing, a few of the features desired by participants. while safod and their affiliates have conducted the time-intensive task of compiling at supplier information within a 10-country region into one searchable platform, the information system is unlikely to achieve its full potential without public investment from national governments and/or the southern african development community (sadc) (vesel et al. 2015). limitations the findings presented in this article report on the implementation of the at-info-map app. while the app developers and authors strived to implement ethical and sound methodological processes during monitoring, some limitations are evident. focus group participants were conveniently sampled rather than purposively. data were collected from several facilitators by persons who were safod employees, with different professional backgrounds. these factors could have led to bias in findings as a convenient sample negatively impacts credibility of findings and participants might have been aware of safod’s involvement with the app, and thus less willing to share negative experiences or thoughts. including different facilitators could have led to a variety in the quality of data between countries, and with that an unequal representation of countries in the narrative examples. although data from south africa had to be excluded, the transcripts from south africa showed no different themes to those identified in the other countries. however, by giving country branches of safod control over the data collection process in their respective countries, they were affirmed and skills were developed among their members. conclusion and way forward the information on at as presented on the app is only a partial solution to at access in southern africa, even if all technical problems were addressed. lack of policy and poor policy implementation, lack of at awareness, supply chain challenges, lack of trained service providers and lack of money all hamper access to at in the setting. at the same time, as the first attempt to map availability of at across 10 countries it is an important step in the right direction. looking forward, participants encouraged safod to sustain the at-info-map data, continually improve the app and ensure that data are accurate and up-to-date, a task that might not be possible without government support. while safod was able to address some technical and programmatic challenges through app modifications and training, the app challenges motivated safod to develop a web-based system that will complement the app, and re-develop the app on a more user-friendly platform. the web-based system allows for more detailed product-level information, greater access for persons with visual impairments and the option to use google translate (https://assistivetechmap.org/). both the web system and the new app will reduce many barriers to access and use, but will remain out of reach to those without internet access. to mitigate marginalisation of those not formally educated and people residing in rural areas, regular outreach programmes where organisations for persons with disabilities gather people and share information from the app are recommended. both outreach programmes and the web-based system must be evaluated at a later stage. acknowledgements the authors thank google impact challenge for funding this project, and also thank all the participants and members of safod who facilitated and transcribed the focus group discussions. competing interests g.k. and m.c. are working for safod in botswana. authors’ contributions s.v. was involved in the overall planning and monitoring of the project, and analysed the data and drafted the article. r.m. drafted the proposal, drove the implementation process and provided input into the article. g.k. and m.c. facilitated data collection and together with m.h. and c.k. provided input into the proposal, implementation process and the article. funding the project received financial assistance from google impact challenge: disabilities programme (https://www.google.org/impactchallenge/disabilities/). data availability statement new data were generated and can be made available by the first author on request. disclaimer the views expressed in the article are those of the authors and not an official position of the institutions they work at or the 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s.j., matter, r., kayange, g.m., chiwaula, m., harniss, m., mji, g. et al., 2018, ‘lessons from the pilot of a mobile application to map assistive technology suppliers in africa’, african journal of disability (online) 7, 1–4. https://doi.org/10.4102/ajod.v7i0.422 watkins, j.o.t.a., goudge, j., gómez-olivé, f.x. & griffiths, f., 2018, ‘mobile phone use among patients and health workers to enhance primary healthcare: a qualitative study in rural south africa’, social science & medicine 198, 139–147. https://doi.org/10.1016/j.socscimed.2018.01.011 world health organization (who), 2011, world report on disability, who, geneva. world health organization (who), 2017, rehabilitation in health systems, who, geneva. licence: cc by-nc-sa 3.0 igo. world health organization (who), 2018, global cooperation on assistive technology (gate), viewed 19 july 2018, from http://www.who.int/phi/implementation/assistive_technology/phi_gate/en/. abstract introduction research methods and design findings discussion conclusion and recommendations acknowledgements references about the author(s) jerome p. fredericks division of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa surona visagie centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lana van niekerk division of occupational therapy, department of health and rehabilitation science, faculty of medicine and health sciences, stellenbosch university, cape town, south africa hamilton g. pharaoh communities of excellence and chairman founder, cape town, south africa citation fredericks, j.p., visagie, s., van niekerk, l. & pharaoh, h.g., 2024, ‘empowering marginalised groups through co-operative inquiry: illustrated by a practical example’, african journal of disability 13(0), a1205. https://doi.org/10.4102/ajod.v13i0.1205 research project registration: project research number: project id: 19117. original research empowering marginalised groups through co-operative inquiry: illustrated by a practical example jerome p. fredericks, surona visagie, lana van niekerk, hamilton g. pharaoh received: 22 may 2023; accepted: 23 oct. 2023; published: 26 feb. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: cooperative inquiry gives a voice to marginalised groups and breaks down power imbalances which makes it suitable for researching practical issues at community level. objectives: the objective of this article is to illustrate how cooperative inquiry can be utilised to empower members of marginalised communities in facilitating social change. method: the study setting is in paarl, western cape, south africa. a cooperative inquiry methodology was used. the inquiry group consisted of wheelchair users (9), their care givers (8), taxi drivers (7) and stakeholders (4). data collection comprised 16 sessions, alternating between action and reflection. inductive thematic analysis of data of all the phases was done to ensure that cooperative inquiry gives voice to marginalised communities. results: the four themes that is, practical arrangements, understanding process, purpose, bonding and a cohesive group were identified. the themes showed progress from logistics, through individual understanding, to the group becoming one, and working together. each of these phases is important in the development of a cooperative inquiry. conclusion: cooperative inquiry methodology can bring people together in a positive way to facilitate social change, and developing practical solutions to challenges. contribution: making use of a cooperative inquiry methodology to bring social change, minibus taxi services can be made accessible for wheelchair users. concepts of social justice and decolonisation were imbued in the methodology. keywords: wheelchair users; minibus taxis drivers, caregivers; access; accessibility; transport. introduction drawing from a study that sought to develop strategies that can assist wheelchair users to access minibus taxis, this article illustrates how cooperative inquiry can be utilised for the empowerment of members of marginalised groups. the focus of this article, however, is not to share the actual strategies that were developed. it focusses on sharing the processes followed to ensure buy-in and authentic engagement of two diverse groups who have a history of an uneasy relationship in south africa (kahonde, mlenzana & rhoda 2010; lister & dunpath 2016; venter et al. 2002; vergunst et al. 2015; visagie, visagie & fredericks 2022) that is, wheelchair users and minibus taxi drivers. the cooperative inquiry formed part of the lead researcher’s doctor of philosophy (phd). it was done in a semi-rural south african town, paarl, where minibus taxis are the main mode of public transport. the cooperative inquiry facilitated empowerment and unlocked knowledge in a marginalised, global south community. a social justice ethos and decolonisation approach were imbued in the study’s methodology. research underpinned by a social justice ethos can give minority groups a voice. eliciting these voices is important in culturally responsive research, counteracting the domination of oppressive narratives and conventional positivist research (chilisa 2012). marginalised groups, such as persons with disabilities, are excluded from mainstream social, economic, educational and/or cultural life. they are subjected to systematic injustice and inequity (parrish 2018). members from marginalised groups are often seen as the objects of research rather than equal thinkers and knowledge bearers (ned 2022). when researchers do not collaborate and partner with marginalised groups to create new ways of knowing, being and doing, injustice is perpetuated (ohajunwa & mji 2021). because of colonialisation, one knowledge set is considered superior while others, often indigenous knowledge sets, are ignored or ridiculed as being inferior (ned 2022; wooltorton et al. 2020), thereby disadvantaging and disempowering indigenous groups (waldron 2010). decolonisation supports the visibility of difference and diversity. it focusses on the knowledge of indigenous people as well as on their being and their doing. it normalises othered narratives and questions the dominance of a single perspective or worldview (ohajunwa & mji 2021). decolonisation is about respectful engagement with members of communities rather than the linear top-down approaches that dominated in the past (wooltorton et al. 2020). research with indigenous people should therefore start by acknowledging their culture and practices, and consciously affirming their knowledge and ability to solve their own problems (ohajunwa & mji 2021). the indigenous group in the current inquiry is the so-called ‘coloured’ people who emerged as uniquely south african with ancestors from different ethnic groups including san, khoekhoe, khoe-san, black african, european and asian populations. cooperative inquiry inherently supports social justice and decolonisation as study participants become co-researchers and infuse research methods and findings with their value systems, worldviews and unique contextual realities. co-researchers draw on indigenous knowledge and strengths to frame objectives, develop theoretical knowledge and/or solutions to practical problems regarding issues concerning them (wooltorton et al. 2020). they are provided an opportunity to share their lived experiences, tell their stories and experience empowerment with the belief that their worldview is valid (ohajunwa & mji 2021). it is crucial that the voices and narratives of those living on the margins are heard and that they contribute to the construction of knowledge. when researchers do not collaborate with marginalised people, ill-advised and inappropriate solutions might be developed and implemented on issues relevant to them. their involvement enhances community buy-in and thus the success and sustainability of interventions (ohajunwa & mji 2021). cooperative inquiry cooperative inquiry is a form of action research that seeks meaning and develops knowledge in four distinct phases during a research cycle; it usually comprises four or more cycles (heron 2014; wooltorton et al. 2020). each cycle starts with a reflective planning phase, then moves to an action phase which is followed by a reflective review, and finally further planning of the next action phase, as presented in figure 1. figure 1: schematic presentation of the four phases of the cooperative inquiry. different forms of knowledge are built in each phase of cooperative inquiry (figure 2). after the first cycle, knowledge is usually tentative and not well-founded. with repetition of cycles, depth of knowledge and credibility are developed. the inquiry is stopped when the group is satisfied with the outcome (heron 2014; wooltorton et al. 2020). figure 2: the four types of knowledge sought in cooperative inquiry. in cooperative inquiry, participants and research team members share power and take joint responsibility for the processes and decisions. all parties act as co-researchers in the planning phases and co-participants in the action phases (heron 2014). all co-researchers and co-participants are equal. co-researchers must be extensively and authentically engaged, completely expressive, wholly heard and fully influential in decision-making. the process, the outcomes and the knowledge created belong to all who contributed to the inquiry (heron 2014). the integration of the four forms of knowing and the empowerment of participants as co-researchers make this methodology suitable for research in disadvantaged communities and/or indigenous groups. cooperative inquiry counteracts views that might have developed over time, namely that disadvantaged groups’ knowledge is of lesser value and that their opinions count for nothing (ohajunwa & mji 2021; wooltorton et al. 2020). cooperative inquiry thus helps to give voice to disempowered persons and to level the power imbalance traditionally found between researchers from academia and study participants from disadvantaged groups. reflection, storytelling and the use of drawing can build on disadvantaged groups strengths and help them find their voices. reflection, together with various creative techniques such as storytelling and drawing, can help identify co-researchers strengths and facilitate them finding their voices. the cyclic process and pace determined by the group help ensure all participants and/or co-researchers remain together in developing wisdom (wooltorton et al. 2020). cooperative inquiry predicates that the answer to challenges can be found within communities and that all humans have useful knowledge and experiences on topics relevant to their lives. cooperative inquiry provides a platform for exploring this knowledge and their experiences. furthermore, it facilitates social justice as it allows participants to inform decisions about the methods, contribute to findings generated and interpret conclusions drawn in research involving them. as such they shape how the knowledge that concerns them should be formulated (heron 2014). a cooperative inquiry method comprising four cycles, each with four phases, is reported on in this article. the specific focus of this article is on the conditions that fostered empowerment of co-researchers, and thus allowed true participation and co-construction of knowledge. study findings generated in the process will be presented in future articles. the study context this study took place in paarl, a peri-urban area of south africa’s western cape province. compared to adjacent communities, paarl east is a marginalised area. most people living in paarl east have low education levels and experience poverty. the area was further affected by an economic downturn, job losses and a rising unemployment rate, with a resultant decrease in household income. high rates of teenage pregnancy, high school dropouts and crime have been common in the area. with rising inflation, many families were forced into poverty. quality of life has been reduced by drug-related crimes, which has negatively impacted human development as it affects all aspects of society, such as family structures, health, the work environment and the community’s economy. within the paarl community, as in other south african communities, wheelchair users live on the margins because of attitudinal barriers, stigmatisation and exclusion from services such as public transport (lorenzo, van pletzen & booyens 2015; vergunst et al. 2017; visagie & swartz 2017). persons with disabilities are often unemployed and survive on a disability grant of zar2080 (±us$104) per month in south africa (government of south africa 2023). the combined barriers imposed by disability and poverty reduce access to education, healthcare, employment and other socio-economic opportunities (parrish 2018). a lack of access to transport contributes to the inability to commute in the community and makes it difficult for wheelchair users to access shops, churches and other services (visagie et al. 2023). in the western cape province, wheelchair users who do not have their own vehicle or access to a family vehicle have indicated several transportation options each with advantages and disadvantages (north & visagie 2020; visagie et al. 2023). none of these options were ideal. some wheelchair users were assisted by a neighbour or a friend with a vehicle (car or pickup). they preferred this option because of the convenience of being picked up at home and dropped off at their destination. transferring into and out of the vehicle was often easier than getting into and out of minibus taxis. however, they were dependent on the time schedule of the vehicle owner. costs were dependent on individual vehicle owners and varied between having to contribute to fuel costs, to being charged fees up to 10 times more than the cost of a minibus taxi trip or a bus ticket (north & visagie 2020; visagie et al. 2023). regarding public transport, except for a few routes in urban south africa, train and bus services are inaccessible. uber and other similar services have the same advantages as paying for a private car, but are too expensive for most wheelchair users (north & visagie 2020; visagie et al. 2023). minibus taxis are affordable, but wheelchair users find it challenging to embark and disembark. and are often hurried by impatient drivers and fellow commuters (fredericks & visagie 2013; kahonde et al. 2010; lister & dunpath 2016; venter et al. 2002; vergunst et al. 2015; visagie et al. 2023). minibus taxis are one of the most important features in the south african public transport industry. being both the most available and the most affordable form of public transport, it ferries millions of south african commuters to and from work and other essential activities. they are especially indispensable in low socio-economic peri urban areas (fobosi 2013). minibus taxi drivers earn between zar6000 (us$386.8) and zar7000 (us$449.6) per month. their earnings are dependent on the number of trips and the number of passengers they transport per day. more trips and passengers mean more money in their pockets. therefore, they have a tendency not to stop for wheelchair users and other groups who are slow to get into and out of the taxi as well as to charge for the wheelchair as it takes the space that a paying customer could have occupied. minibus taxi drivers have an image as aggressors and antagonists on south african roads. they are often stereotyped as aggressive, dangerous and unlawful road users (sinclair & imaniranzi 2015). minibus taxi drivers are generally expected to display negative behaviours that include vulgar language, speeding, disregard for traffic lights, obstructing the flow of traffic, drifting into the safety lane, reckless driving and illegal turns, stops or parking. members of the public associate minibus taxi drivers with taxi-related violence, which is characterised by threats, corruption, brutal attacks, illegal dealings, assaults and even assassinations (ngubane, mkhize & olofinbiyi 2020). conversely, minibus taxi drivers are confronted with rude and/or abusive passengers who put them under pressure to speed to make up time, causing conflict that can escalate to intense arguments within the taxi (ngubane et al. 2020). the described challenges that wheelchair users experienced to access transport coupled with the importance of community mobility provided the topic of the cooperative inquiry this article draws from. it was also clear to the lead researcher that the inquiry needed to include both wheelchair users and minibus taxi drivers as co-researchers as solutions acceptable to both groups had to be sought. research methods and design study design a cooperative inquiry design was implemented to bring together two opposing groups: wheelchair users and minibus taxi drivers, to seek solutions beneficial to both. the wheelchair users were also a marginalised group. the four sessions were divided into two reflective sessions, a planning session and action sessions or practical activities. the meetings were facilitated by the lead researcher and the research assistant. sampling and recruitment five distinct groups of co-researchers participated in the study: wheelchair users who were using or wanted to start using minibus taxi services. care givers of participating wheelchair users. minibus taxi drivers. stakeholders involved in disability matters in the study setting. the lead researcher and first author for this article (hereafter referred to as the lead researcher) and the research assistant. co-researchers had to be 18 years of age or older (the age of legal consent in south africa). minibus taxi drivers had to have a public transport licence with a taxi permit for transporting people. taxi drivers who drove metered taxis were excluded from the study as the focus was on minibus taxis. co-researchers were recruited as follows (see table 1 for details): nine wheelchair users were identified through a combination of contacting disabled people’s organisations (n = 4), approaching known wheelchair users in the community (n = 3), a street-based approach (n = 2). a street-based approach can be used by researchers to access vulnerable groups that are hard to reach as they are not formally associated with organisations, points of service delivery, workplaces or other societies from which research participants are often sampled (ellard-gray et al. 2015). therefore, where wheelchair users were seen in the community they were respectfully approached and after introductions and explanations were asked if they would be interested to participate in the research. incorporating a street-based approach increased the likelihood of recruiting hard-to-reach participants. eight caregivers of wheelchair users participated. the ninth wheelchair user had no carer. during recruitment, wheelchair users and carers were visited at their homes. the study was explained to them, and they were asked to attend the introductory meeting if they were interested to participate in the study. written informed consent was obtained after the introductory meeting. seven minibus taxi drivers: the lead researcher explained the study to the chairperson of the paarl taxi association group. he provided the endorsement of the association, expressed his interest in the study, and provided names and contact information of 19 minibus taxi drivers who might want to participate (after obtaining their permission to share personal information). on contacting them, seven gave consent and participated in the study. four stakeholders involved in disability matters: a professional nurse who provided orthopaedic aftercare services to the community. a disability activist who was diagnosed with polio as a child. a member of the community who is interested in disability issues. a member of the public who has technical knowledge pertaining to wheelchairs. table 1: number of co-researchers per category. data collection data were collected during the 16 cooperative inquiry sessions, organised into four cycles, between june and december 2021, as per figure 1. the sessions lasted between 60 and 120 min each. it was not always possible for all 30 co-researchers to attend sessions. attendance varied between 75% and 100% per session. attendance lists were kept for compensation purposes and as part of coronavirus disease 2019 (covid-19) protocol. the covid-19 protocols were wearing of facial masks, taking body temperature and recorded it in a register, sanitising of hands, participants had to sign attendance list next to their contact number and physical address, maintaining social distance of 1.5-m, sanitising of all equipment such as the microphone. the larger group of 30 co-researchers was divided into smaller groups for certain sessions, such brainstorming on strategies that might enhance wheelchair users’ access to minibus taxis and physically tying out these strategies during action phases. the smaller groups typically contained five to six co-researchers. each small group consisted of wheelchair users, caregivers, minibus taxi drivers, and a stakeholder involved in disability matters. planning and reflection sessions were digitally audio-recorded, and handwritten notes were kept by four co-researchers (s2, c4, td4 and c5 – table 2). the practical sessions (figure 1) were video recorded by a professional videographer supported by three co-researchers (wcu6, td3 and td4 – table 2) who recorded proceedings with their cell phones. table 2: co-researchers demographic details. to assist co-researchers with preparation and to enhance the richness of data, a summary of previous work and points to be addressed during the next session were sent to all via whatsapp or in hard copy (depending on their choice) before every session. the group decided when to discuss a point in more detail and when to move on to the next point. all data were transcribed and provisionally analysed after each session. data saturation that is, the group felt that they have identified suitable strategies that might help wheelchair users access minibus taxis, was reached at the end of the third cycle. a fourth cycle was included to reflect deeper on the experiences of the co-researchers and enhance the credibility of the developed strategies. co-researchers communicated using whatsapp, which is an instant messaging application. all whatsapp messages were included as data with the permission of the co-researchers. the lead researcher kept a reflective journal, which also formed part of the data. data management and analysis data were transcribed and analysed immediately following collection to inform subsequent phases and cycles. video recordings added detail to transcripts, for example, to identify individual speakers, facial expressions, and body language as well as descriptions of physical activities such as boarding a taxi. braun and clarke’s (2012) six-step inductive thematic analysis approach was used to develop themes (braun & clarke 2012). an iterative reviewing and refining process was followed during which the authors reached consensus on themes. data were collected and analysed in afrikaans. quotes used for reporting purposes were translated into english. the second author of this article verified the correctness of the translations from afrikaans to english. trustworthiness of the study trustworthiness was sought through conventional strategies used in qualitative research as well as specific strategies suggested for cooperative inquiry. data from different sources and data collection methods were triangulated to enhance credibility, confirmability and dependability. a detailed description of the research setting and methods was done (nowell et al., 2017) to support transferability. repeating phases and cycles as well as movement between reflection and action phases allowed for development of deeper insights and refinement of solutions and thus enhanced credibility. trustworthiness was also supported by the researcher’s reflection. ethical considerations ethical approval was obtained from the health research ethics committee of stellenbosch university (s21/01/009). informed consent included providing information pertaining to the amount of time and level of commitment required. all co-researchers gave written consent. a first aid officer was present during the practical sessions, which included minibus taxi transfers. the first aid officer ensured safety and was on standby to provide emergency treatment should any injuries occur. no one was injured during the inquiry. co-researchers were compensated for the time they invested by means of cash payments. the transcriber signed a declaration safeguarding personal details of the co-researchers. to support confidentiality and privacy, no video recordings were made of the planning and reflection sessions. only the lead researcher viewed the video recordings of the practical sessions and some of the video material was shared with the supervisors. the data were stored in the password-protected stellenbosch university’s sun scholar research repository (where they will be kept for 5 years). findings in line with the purpose of this article, the findings report on all cooperative inquiry process-related aspects from all the datasets of the 16 sessions, rather than the actual study outcomes. demographic details the demographic details of the 30 co-researchers are presented in table 2. key processes that supported the development of cooperative engagement four emerging themes captured the elements that were deemed critical to working together to develop cooperative solutions. these were ‘practical arrangements for a cooperative inquiry’, ‘understanding process and purpose of a cooperative inquiry’, ‘bonding of co-researchers’ and ‘formation of a cohesive group’. the categories comprising these themes are depicted in table 3. table 3: themes and categories that emerged from the data. theme 1: practical arrangements for a cooperative inquiry theme 1 demonstrated that careful consideration of practical arrangements is required because they provide the structure for the inquiry and mirror the nature of relationships and level of participation that can be expected. co-researchers seemed to take their cue from the respectful engagement and attention to detail which was experienced during their enrolment into the study. six categories, as shown in table 3, captured the range of practical arrangements that fostered participation which are discussed below. venue: the size, accessibility and suitability of the venue in terms of socio-cultural-spiritual connotations required consideration. the venue had to have enough space for practical sessions and had to be wheelchair accessible. the cost of the venue and lock-down restrictions during the covid-19 pandemic also had to be considered. a church was offered by a pastor and church council as venue. while it met the study requirements in terms of accessibility and size, sensitivity had to be shown to the fact that co-researchers, who had diverse religious affiliations, might have reservations about meeting in a church. co-researchers were invited to share any concerns about the church venue during initial home visits as part of recruitment but in the introductory meeting none were voiced. one co-researcher who is muslim said that: ‘i have no objections meeting at a church venue. all that i am requesting is to wear my taqiyah [a rounded skullcap] because we as muslims normally wear it during the day and especially when we pray.’ (td6, 38, male) this request was honoured. breaking bread: eating together addressed practical, social and psychological aspects. sessions ran over dinner time; thus, co-researchers were provided with a cooked meal at the end of each session. a community member known for making delicious food cooked the meals. the lead researcher bought the ingredients and delivered them at her house. she prepared the meals such as curry chicken, biryani, or chicken pie, salads and desserts (small, sweet treats). cold and hot beverages were available. the food was placed in serving dishes and co-researchers dished their own food and assisted those who needed help. money for catering was included in the cooperative inquiry budget and careful records were kept ensuring accountability. any leftover food was placed in ‘doggy bags’ and co-researchers could take them home to share with family members. because eating together on special occasions forms part of the culture of the community, it facilitated trust and social bonding. being served a specially prepared meal signalled to the co-researchers that they were valued as people and for their contribution to the inquiry. sharing a meal together allowed relationships to develop naturally and fostered a kinship between co-researchers, as wcu 9 told the group: ‘you are a wonderful group of people, the jokes we share with each other; we do not know whom among us talks most and who eats most, but i want to say to you, “you are a wonderful, wonderful group of people”. (wcu 9, 37, male) individual needs (such as halal food for muslim co-researchers) were met, and milestones (like birthdays) were celebrated during this social time. time: it was imperative that meeting times suited all co-researchers because of the goal to have all co-researchers present at every meeting. the group agreed to meet in the evening as minibus taxi drivers worked during the day. to ensure consistency, the group decided on mid-week meetings on thursday and, if required, an additional meeting on sundays. to avoid confusion or miscommunication, the date and time for the next meeting were set at the end of each meeting: ‘on the day of the introductory meeting, a valuable lesson was learnt regarding communicating times clearly. around 05:15 in the morning i received a phone call from one of the co-researchers who was waiting for me to pick him up. i realised that i should have explained to him groups will be in the afternoons and not in the mornings. the effort he had to go through with his wheelchair to get to the pick-up point moved my heart because the surfaces were uneven, the area was dangerous, it was cold, he was waiting for me in the dark and i was not there to pick him up. i apologised and assured him it will never happened again. he in turn felt that it was his mistake due to his excitement to attend the groups. we laughed about the incident and put it behind us.’ (lead researcher: reflective journal, 45, male) transport: access to transport was at the core of this study and, as already described, it is a complex matter for wheelchair users. as people were approached to participate in the study, their first concern was how they would get to the venue. it was important to ensure everyone could attend every meeting without anxiety about transport. to this end, the logistics included ensuring that all co-researchers had transport to all meetings and that transport costs were covered by the inquiry. knowing that transport costs were covered and that a designated person would pick them up at a specific point meant that co-researchers could relax and focus on the inquiry. group communication: clear and timeous communication among co-researchers was essential to the success of the inquiry. two communication groups (one for minibus taxi drivers and one for wheelchair users and carers) were created on whatsapp. telephonic and in-person communication served as back up when the co-researchers did not have data to use whatsapp. initially, two whatsapp groups were deemed feasible as some initial information was relevant only to the wheelchair users and other only to the minibus taxi drivers. however, only one group would have been better and assisted further in creating a unified group. language choice: the group collectively decided to use afrikaans as medium of communication because afrikaans was their mother tongue and the language they preferred. it was important to select a language for group communication by group consensus early in the process, as it affirmed co-researchers’ preferences, and it showed that the lead researcher was serious about the process being consultative and that the co-researchers’ opinions were being valued and acted on. theme 2: understanding process and purpose of the cooperative inquiry theme 2 captured requirements that enabled study participants to perform their role as co-researchers. the theme demonstrated how home visits during participant recruitment, an introductory meeting, and development of a group contract assisted in creating the necessary understanding of processes to be followed and the purpose of the cooperative inquiry among co-researchers. home visits: cooperative inquiry is built on relationships characterised by respect and trust. in this study, time was taken to visit potential participants in their homes in order to explain the study process and purpose, and to address their questions and concerns individually and in private. this action showed potential participants that they were respected and considered important. the potential participants were not asked to decide whether or not they would participate in the study during the visit to their homes. instead, they were left with an invitation to attend an introductory meeting. this strategy was used to emphasise and protect their autonomy. spending time in participants’ homes and meeting their families also helped the lead researcher to get to know the participants and to develop an understanding of their individual contexts. the lead researcher reflected about these home visits the following way: ‘doing home visits is one of the best ways to establish trust. you enter their [potential participants] homes. being humble. showing that you need their help and that they are important. they were provided with information about the study and could ask questions in private. without any peer pressure. it seemed to the lead researcher that connecting with people in their homes helped them to better understand the study and their roles and they were more willing to participate in the study.’ (lead researcher: reflective journal, 45, male) home visits and spending time explaining the purpose of study clarified misunderstandings, as shown by the explanation provided by wcu 4 on his initial thoughts about the reason for the visit: ‘i thought this man is coming to win votes. since i was busy, i quickly said i vote for no one. i am not going to vote. he then said, ‘no i am not here about voting.’ then he explained what it was about, and i said, ‘that is something good and good to get out of the house.’ (wcu4, 57, male) introductory meeting: individual explanations were followed by explanations and discussions in the group. therefore, the first meeting served as a formal introduction to the study. co-researchers had time to get to know each other, to discuss the inquiry purpose and process among themselves, and to seek further clarity from the lead researcher or the research assistant. the study aim, the process of cooperative inquiry, and the role of co-researchers were introduced by means of a powerpoint presentation. following the presentation, the co-researchers divided themselves into pairs to discuss the information. they were encouraged to think of aspects they found concerning and to share their thoughts on the proposed study. questions related to practical considerations and group logistics (e.g. number and time of meetings, compensation for time and refreshments) as well as ethical concerns and justice (e.g. ownership and use of the information, how the study will benefit co-researchers, and what will happen on completion of the study). this is reflected by the question quoted below that td3 asked the lead researcher: ‘what is the purpose of us having these meetings and what will be done with the information provided by us.’ (td3, 48, male) during the introductory meeting, the co-researchers decided on practical logistics such as language use, meeting times and allocation of specific roles. they also discussed issues pertaining to the significance of the study and its possible benefits. lastly, the co-researchers jointly developed a group contract and provided written consent. group contract: the inquiry was owned by the co-researchers who developed a contract to explicate and guide practical issues, behaviour, confidentiality and respect. the purpose of the group contract was explained as follows by the research assistant: ‘as you all know with any group engagement we need to adhere to the rules and regulations of the group and specifically when it comes to each other’s personal information. the purpose of the group contract is to talk about the do’s and the don’ts or what is acceptable or not acceptable or with what you are comfortable or not comfortable.’ (ra, 50, male) confidentiality, respect and equality were important to co-researchers, as illustrated by the following quotes: ‘all information should be treated as confidential and not be shared outside the group without permission.’ (wcu1, 50, male) ‘all group members must be treated with respect. everyone must be encouraged to contribute to the discussion. all must have a fair opportunity to express their opinions. no one should laugh at another’s contribution. when one person is talking, others should listen.’ (td2, 32, male) ‘no private side conversations while someone is speaking should be allowed and cell phones should be switched off, on silent, or vibration mode and lastly consent from the group is required to take photos and post it on social media like on whatsapp groups.’ (s2, 62, female) important elements were reinforced by the research assistant as shown in the example below: ‘inappropriate language like swearing or making inappropriate comments to each other or the opposite sex are not permissible.’ (ra, 50, male) theme 3: bonding of co-researchers co-researchers ascribed the success of the inquiry reported here to the development of an emotional bond among co-researchers. this required the building of mutual trust, coming together in the group, authentic collaboration and dealing with hostility. building trust: developing mutual trust was especially important in this study because of existing power imbalances between wheelchair users and minibus taxi drivers, as well as between wheelchair users and minibus taxi drivers on one hand and the lead researcher and research assistant on the other. some co-researchers shared doubts about their participation in the study: ‘i am sceptic to participate because there is no political vote in this country for wheelchair users. nothing! nothing! all the ministers at the president’s office knows about all of our challenges but still they are doing nothing to assist us. they don’t want to do anything for us. so what is the use to participate and you know nothing, nothing is about to happen.’ (s1, 66, male) they feared disappointment and being misused: ‘in the past we had so many meetings and so many promises have been made and still today nothing has changed so what will be the difference with these types of meetings?.’ (s1, 66, male) the research assistant acknowledged the co-researchers’ fears and helped create a safe and trusting space where knowledge could be shared and developed. the research assistant shared that: ‘we live in a community where everybody is always in crises. our community is continually in trauma, our people experience trauma, but there is no one to assist them through the trauma. every one of us walk with pain every day. we need deliverance and we need to be there for one another and support each other. tonight, we can make the choice about all our pain and decide we want to make something beautiful from it. i think that is what the future holds for us, whatever develops from this [the inquiry], the next time when it is not inquiry, can we get together and say, “what can we build from here?” that is part of the work that jerome and i want to do … that is why we are together, it is not about inquiry, not about a doctoral degree. it is about how can we make a difference in our community to give more hope to someone else.’ (ra, 50, male) the lead researcher shared his vision for the study: ‘think of those who don’t have transport to go and see their loved one participating in sport events or receiving academic awards at school, who is unable to make use of services within their communities or who is unable to participate in leisure activities. my vison is that we as co-researchers can ultimately contribute to improved quality of life for wheelchair users.’ (lead researcher, 45, male) the lead researcher also shared his emotions and perspective on the importance of the study while affirming the essential contribution of co-researchers without whom the inquiry could not be done. having recently lost his mother, who required a wheelchair in later life, he made the link between his personal aspirations and the rationale for the inquiry: ‘looking at the wheelchair, i see my mom in it and that motivates me to continue with the study … every time i look at that chair, i experience inner strength. that chair of hers is like her saying to me, “here is the empty chair, go and fill it, finish your phd”.’ (lead researcher, 45, male) coming together: for successful cooperative inquiry, people must be together in mind and spirit, not only physically. co-researchers believed in the importance of the study and that helped to unite the group. a key moment, when the group started to discuss the need for the study, illustrated the importance of letting co-researchers express their thoughts and feelings instead of providing them with answers; co-researchers started power-sharing and a cooperative process. wheelchair users and caregivers united in their realisation that participation in the inquiry could be the platform they had been looking for to raise their voices regarding inaccessible minibus taxi services: ‘… taxi drivers and wheelchair users don’t have an understanding with each other when making use of taxi services … this platform will assist them to raise their voices to have a better understanding for each other as well as regards to accessible minibus taxi services.’ (s1, 66, male) the feeling, that someone was really listening to their challenges, seemed to bolster and motivate them. the group became a source of information and co-researchers grew together. as shown by the statements of appreciation made by c7 and td6 to the group: ‘uncle and i stayed with the group. we came to love the process we went through. this is a lovely group of people. we communicate, we learn that we must respect people in wheelchairs. i have been educated in that. i am glad i have met jerome and that i could attend the sessions.’ (c7, 55, female) ‘i had a sense of belonging because no one judged each other. all just want to make a difference or adding value for a better circumstance for themselves as wheelchair users.’ (td6, 38, male) authentic collaboration: it was important that everybody felt welcome to participate and know that their opinions were valued and important. the foundation for authentic participation was created through group consensus on practical issues such as the timing, duration and frequency of sessions. co-researchers also steered the development of the group contract and picked roles that suited them. making these decisions helped to develop a sense of autonomy and ownership among all. the discussions were not dominated by one or two co-researchers. everyone had the opportunity to raise their voices and share their thoughts and experiences. no voices were silenced, and all contributions were appreciated as worthy. the lead researcher explicitly reinforced co-researchers to contribute to the cooperative inquiry through statements like: ‘there is no right or wrong answer; just say it just as it is.’ (lead researcher, 45, male) affirmative responses were used to facilitate participation: ‘thank you very much for sharing that information with us. it is valuable and insightful.’ (lead researcher, 45, male) not all are equally comfortable to speak in a large group. to facilitate authentic collaboration, smaller group (five co-researchers) discussions were included in the process. the research assistant also encouraged co-researchers to commit themselves to the study, cooperate and speak out: ‘we can make a difference with the study and in our community so that another person and specifically wheelchair users can have hope in the future.’ (ra, 50, male) dealing with hostility: wheelchair users and minibus taxi drivers have generally been considered antagonists, with little cooperation and regular hostility between them (kahonde et al. 2010; lister & dhunpath 2016; lorenzo 2008; venter et al. 2002; vergunst et al. 2015; visagie et al. 2023). however, in the current study, it was essential that both parties were present and working together towards a common goal. at the start of the inquiry, the relationship between the two groups was strained. the wheelchair users and caregivers made it clear that they were not happy with the treatment they received from minibus taxi drivers in the past and that it affected them in a negative way. they generalised experiences of being treated poorly by minibus taxi drivers to all the minibus taxi drivers, including those participating in the inquiry. in one incident, a caregiver expressed emotional distress because of poor services and unfair treatment of her loved ones. she strongly expressed her dissatisfaction and disappointment towards a specific minibus taxi driver: ‘taxi drivers don’t feel anything for wheelchair users they are all the same just to make money and they don’t care for wheelchair users. i want to say to the taxi driver most of you taxi drivers are the same. you do not care about people that use wheelchairs. both my mother and father use wheelchairs and we cannot depend on taxis for transport. i know it will not happen. you do not have any feelings towards us; and nobody will be able to convince me differently … we know you must make money … but you will lose nothing by being a little friendlier and more helpful.’ (c8, 41, female) the atmosphere in the group was very tense, but all co-researchers empathised with her pain. the group encouraged her to express her emotions and confirmed that she had the right to her feelings. after being gently calmed down, she felt relieved and at ease with her emotions and realised she never had the opportunity to express the grief, which she carried with her all these years. the co-researchers were validated for the decision to spend time and provide the space the caregiver needed to identify and deal with her emotional disturbance. the minibus taxi driver was also provided with the opportunity to share his views and thoughts. he made it clear that it was not his intention to hurt the emotions of anyone and that the group assisted him to understand the challenges wheelchair users face: ‘i am very sorry if i hurt anybody’s feelings. it was not my intention. we, taxi drivers, including myself, needs training so that we can be friendlier and provide more help to wheelchair users. drivers must go for training. and a hundred percent their mindsets must change. how you approach your passenger. i think the wheelchair thing shocked me to reality tonight. never before, have i talked with people in a group. i now realise how difficult it is. personally, i am going to try to assist the guy in the wheelchair to get around.’ (td5, 48, male) in general, the minibus taxi drivers acknowledged the frustrations of wheelchair users and pointed out that they were unaware of the struggles and how difficult it was for wheelchair users to use minibus taxis. it was also pointed out that the attitudes of wheelchair users can determine the support they get from minibus taxi drivers: ‘as taxi drivers we must realise we are here to provide a service. but if the attitude of wheelchair users is arrogant it will determine whether we will assist them and how we will act towards the wheelchair user. i can say honestly no taxi driver will assist an arrogant wheelchair user.’ (td3, 48, male) the conversation helped both groups to develop a better understanding of the other’s situation. this sharing brought the realisation that they needed to join hands and work together in harmony to address the challenges with appropriate and suitable strategies: ‘it is very important that we as wheelchair users and taxi drivers respect and appreciate each other and that we have patience with each other.’ (wcu4, 57, male) ‘there needs to be training for us as taxi drivers so that we can have a better understanding of the needs of wheelchair users and how we as taxi drivers can handle them and provide a better taxi service.’ (td5, 48, male) theme 4: forming of a cohesive group after the forming, storming and norming stages captured in the previous themes, the final theme comprised the performing stage of the cooperative inquiry and adjourning the process. this theme consists of four categories which are: connectedness, believing, coming-to-an-end and moving on. connectedness: the connectedness among the co-researchers became stronger towards the middle of the study and a sense of community developed: ‘the groups are very important to me. the first time when i walked in, i felt the atmosphere, it is my family. not in flesh, but spiritual. when people ask me about the group … i respond, “those people are like my own family, i feel at home with them like with the family in my house”.’ (wcu3, 52, male) ‘in the beginning when [lead researcher] approached me to be part of this group, i did not want to come at first. but i am not sorry that i am here. i learnt a lot. things i did not know, and it was informative, the friends, the small group that i was a part of was lovely.’ (c6, 67, female) ‘i have a sense of belonging because no one judged each other. all just want to make a difference or adding value for a better circumstance for themselves as wheelchair users.’ (td6, 38, male) their engagement moved beyond the study requirements co-researchers’ roles and responsibilities with regards to the cooperative inquiry, as social relationships were developed. co-researchers communicated electronically, visited each other, showed concern for each other’s well-being, and provided support to each other. wheelchair user number 6 sourced funding and organised a valentine’s ball for the co-researchers, their partners and other wheelchair users in the community: ‘i am so empowered with what we have done and achieved with the inquiry that it inspired me to do more. i would like to know if i can contact members who are part of the inquiry to ask them if they are interested to attend a valentine ball for wheelchair users free of charge.’ (wcu6, 32, male) believe: being from marginalised communities, co-researchers might have felt they have little to offer. however, through the inquiry process they developed confidence in their ability to find solutions to problems faced; something they took pride in. for instance, wcu7 expressed that: ‘i am happy and believe god will provide a way. in the future wheelchair users will have better way to ride about in taxis.’ (wcu7, 54, female) the lead researcher, on the other hand, shared that: ‘every time i come to a group meeting and stand in front of you … and talk with you, i ask myself, “goodness, we are all from [names of three suburbs] can anything good come from [first suburb], can anything good come from [second suburb], can anything good come from [third suburb]? these are usually the neighbourhoods that nobody wants to be associated with” then i look at this group and i can say proudly, “yes, good things can come out of these neighbourhoods”.’ (lead researcher, 45 male) coming-to-an-end: terminating the inquiry process came with many emotions because co-researchers valued attending weekly group discussions, experienced a growth in knowledge and confidence, developed trust, and started caring for each other as shown by statements from wcu7, c5, td6 and c3: ‘i feel unhappy, unsure, disappointed and angry because it is almost a piece of me is taken away.’ (wcu7, 54, female) ‘i am a bit emotional now that we are getting to the end of our meetings because i have learned so much about assisting wheelchair users and people with disabilities. yes, it is sad because i enjoy the discussions a lot.’ (c5, 48, female) ‘i will be missing the group sessions and interaction with the everyone. i met wheelchair users with disabilities who want to make a positive impact in life. i can learn from each one and was looking forward to seeing everyone at the group sessions.’ (td6, 38, male) ‘i am happy to have been part of the group. i met new people whom i did not know before. i have learned so much … before i came to the group, i was shy. i could not talk in front of people. the group changed me a lot.’ (c3, 45, female) the co-researchers were reminded that they could visit a counsellor of their choice and that the cost of counselling would be covered by the current inquiry project budget. moving on: the cooperative inquiry process has equipped co-researchers with the belief that they can make a difference going forward: ‘i want to take what i have learned and not keep it for myself. i want to go out and talk about what i have received here. i want to share it with people.’ (c3, 45, female) some of the co-researchers started to envisage broader opportunities for persons with disabilities, for example, a driving school specifically for persons with disabilities and persons with disabilities obtaining ownership of a taxi service. wheelchair user number 6 shared that: ‘i do not know how realistic this sounds, but i am thinking of starting my own driving school for people with disabilities and specifically wheelchair users who have the need to drive their cars again. i know a lot of planning and logistics will need to go into this idea of mine, but i would like to explore this area.’ (wcu6, 32, male) wheelchair user number 1 similarly expressed: ‘what if one of the wheelchair users get hold of his own taxi for wheelchair users in the paarl area?’ (wcu1, 50, male) participation in the inquiry had positive spin-offs with potential community building initiatives beyond the inquiry, as captured by s2: ‘we learned so much from each other and about our needs. no one should be underestimated despite your age, culture, race, status in life or how many degrees you have. we can learn from each other. so, coming to an end it is just amazing to be part of this process and that this process should not be temporary because there are so many other aspects that still can be addressed.’ (s2, 51, male) the minibus taxi drivers who participated in the cooperative inquiry developed an understanding of the challenges faced by wheelchair users when using minibus taxis. they expressed how the inquiry has changed their perceptions towards wheelchair users and that they would gladly assist wheelchair users with transport in future. as indicated by td4: ‘seeing that i have not yet transported wheelchairs users, but i have already gained experience here in the few sessions we had, it will be a pleasure for me to transport someone in a wheelchair. i have learned a lot here and i have motivated myself from the beginning until now and i would prefer to do it with communication and love for the people. i now understand the dilemma of the people with wheelchairs and for me it will not be difficult at all, on the contrary, it will be a pleasure for me to be able to transport people with wheelchairs.’ (td4, 45, male) minibus taxi drivers have kept this promise and sent video clips and photos of how they are transporting wheelchair users after attending the cooperative inquiry to the lead researcher. the minibus taxi drivers used the transfer strategies developed during the inquiry to assist wheelchair users into and out of the minibus taxi. co-researchers felt similar inquiries can be used in future in paarl to address other disability matters for instance facilitating the incorporation of universal design principles of buildings. wheelchair user number 3 stated: ‘from my side after we have covered this accessible minibus taxi for wheelchair users, and we are now able to get to the shops, but the problem is look at centre point shop for instance it is not wheelchair accessible. i think the group should look at what can be done to make all buildings accessible for wheelchair users as well.’ (wcu3, 52, male) the lead researcher had the opportunity to share about the cooperative inquiry at public events, churches, on local radio stations and on national television. discussion the themes captured the progression of the inquiry from practical arrangements for a cooperative inquiry to individual understanding of the process and purpose of a cooperative inquiry, the bonding of co-researchers to the formation of cohesive group, and finally becoming one, and working together, and moving on. each of these phases is important in the development of a cooperative inquiry. practical arrangements for a cooperative inquiry paying attention to, and deliberating on, practical and logistical aspects are essential components of a successful cooperative inquiry. ensuring that practical arrangements were well organised, inclusive and welcoming set the platform for the inquiry. giving attention to the practical arrangements is important for the success of the inquiry. it affirms co researchers and shows respect for them, their time and contributions. it provides co-researchers with a sense of organisation and peace of mind. following a clear structure for logistical arrangements meant everybody knew exactly how the process would unfold and left little room for confusion and misunderstandings. with these basics in place, the co-researchers could focus their energy on the inquiry rather than logistical issues like transport, meeting times or what they would eat when they got home after the sessions. it is part of south african culture to provide food during engagements. eating together is associated with laughter and happiness; it provides an opportunity for people to interact in a relaxed manner, share jokes and enjoy one another’s company. sharing a meal means that stressors are put aside for the moment and the opportunity is created for building trust and relationships are built. according to dunbar (2017), people tend to feel closer to one another when eating together. furthermore, it widens an individual’s social networks and the possibility for social and emotional support. in this study, eating together created a safe space for co-researchers to share their deeper feelings of concerns and worries with other co-researchers around the table. language choice is important in south africa with its 12 official languages and the potentially divisive forces when people do not understand each other or are forced to speak a language which they are not comfortable with. forcing a language on the group could have made some members feel unwelcome, thus stifling their opinions. conversely, speaking in your home language facilitates spontaneity as you can express yourself without fear of using incorrect grammar or difficulty finding the exact word to clarify your thoughts. people tend to feel shy and limit their engagement in a language they are less comfortable with, because they might be worried about embarrassing themselves (tanveer 2007). letting co-researchers express themselves in a language that they were comfortable with, afrikaans in this instance, allowed them to better share their views and experiences, an aspect also reported by williams (2019). understanding processes and purpose of cooperative inquiry for members of the inquiry group to participate actively as co-researchers, they had to have a clear understanding of the purpose of the study and their roles in it. the level of involvement expected from co-researchers might have been a new experience to some co-researchers. therefore, time had to be spent in the initial stages of the inquiry to ensure that all co-researchers understood the study processes and their possible contribution to it. the nature of cooperative inquiry, with its phases and cycles, can be confusing. to prevent confusion, the workings of each phase and cycle had to be explained repeatedly. facilitating understanding of the processes and purpose of the inquiry started with home visits, was reinforced at an introductory meeting, and further supported by information as the inquiry unfolded. it was important to focus on only one phase per session. providing co-researchers with session topics in advance allowed them to come prepared and contribute meaningfully to the discussions. furthermore, they understood what was being done in each phase and could organise their thoughts and responses. community entry and researchers building relationships with community members in general, and study participants specifically has been shown to be critical aspects of any research process (chilisa 2012). visiting potential participants in their homes affirmed the co-researchers’ worth and helped the lead researcher to understand them better through observing them in context; this finding was previously described by kawulich (2005). for the co-researchers in the current research, concrete activities such as breaking into small groups, discussing what they have heard and bringing that back to the larger group enhanced understanding of the methods and expectations. bonding of co-researchers it is important that intersubjective dialogue should manifest through authentic collaboration since it is a key component in refining knowing in cooperative inquiry (heron 2014). for cooperative inquiry to succeed, co-researchers must collaborate. in this study, collaboration was premised on development of genuine empathy with each other. empathy requires that people make themselves vulnerable and share traumatic lived experiences relevant to the topic (day, lawson & burge 2017). people can only share when there is trust in the group and when they feel the space is safe (kolbe et al. 2020). in their vulnerability, the strength and resilience of co-researchers could be seen regarding the challenges around the topic. hesitance and distrust, as was shown initially by co-researchers, was not surprising as researchers had in the past abused the trust of marginalised groups through disempowering research practices and the misrepresentation of their stories (ohajunwa & mji 2021). it is not known whether current study co-researchers had past experiences of such practices, and they might have been exposed to or heard of these practices. when participants take part in research, an expectation is being created by the researchers that the situation will change, but sadly in some cases their situation remains the same (cook & cox 2022). mc donald (2020) warned that the academic members of a cooperative inquiry group must remain aware of the power imbalances and the undercurrents of mistrust and abuse. they should never force their opinions on the group. their engagement with participants is not to dominate but to seek collaboration and learn (ohajunwa & mji 2021). it is important to ensure an equilibrium in power between the co-researchers (mcdonald 2020). through being honest with participants and sharing emotions and dreams for the study, the lead researcher showed his vulnerability. this could have assisted in breaking down distrust and helped facilitate authentic participation on the part of the co-researchers. people want to work with real people with integrity and morals who can provide hope to inspire, to empower but most of all who are making a positive change within the community (page & wong 2000). in this study, there was a second power dynamic to be managed; that between wheelchair users and minibus taxi drivers. for these two parties to develop cohesion, dialogue was required at a level of sharing emotion. both parties’ views had to be heard and the group had to collectively solve issues in order to work towards a common goal. the inquiry process lends itself towards opportunities for people to unpack and express past hurts; and then move forward collectively. past hurt and frustration can be projected onto other members of the group as was shown in the current study findings. the natural response might be to defend oneself; a situation that might harm or even derail the inquiry (heron 2014). in this study, it was deemed necessary to allow space for sharing pain, but then also to give everybody an opportunity to share their feelings, clear the air, and move forward as a collective. the caregiver could openly accuse minibus taxi drivers of being uncaring when it comes to wheelchair users, and the minibus taxi driver had the opportunity to respond. the group supported both of them and they could resolve the animosity and move forward collectively. every co-researcher had to feel valued, and co-researchers trusted each other with personal and, sometimes painful, information. for optimal results, the group had to work together as a cohesive unit instead of against each other or in smaller subunits that do not trust each other. in the current inquiry, small groups were used, but these were never in opposition to each other. the smaller groups functioned as subsets of the larger group who always had the success of the larger group at heart. a sense of belonging and pride to be involved in something important such as access to minibus taxis was fostered. when reflecting on past experiences, there is a tendency to disclose things which were avoided in the past which can produce strong emotions (heron 2014). the findings presented under dealing with hostility demonstrated how the co-researchers’ willingness to provide space for and pay attention to the distress shown by others led to authentic sharing and fostered true participation. if distress and strong emotions were ignored, the suggestions of this inquiry, as described in another article, could have been distorted by the buried emotions (heron 2014). formation of a cohesive group the co-researchers have never before had a platform or opportunity to share their experiences and be part of a formal process for developing solutions to a common problem. coming-to-an-end for co-researchers came with many emotions because they felt that they will be missing out on the social interaction they had together, which included group discussions, eating together, supporting each other, learning from each other and making a positive contribution to an inquiry. discussing the actual contribution made in this inquiry falls outside the scope of this article as the focus here is on the cooperative inquiry process. suffice to say that co-researchers developed strategies that can be further explored and hopefully implemented to assist wheelchair users to access minibus taxis in the paarl community, and to guide minibus taxi drivers in accepting wheelchair users as members of their consumer body. these strategies will be presented in detail in another article. the cooked meals members received allowed some of the members to share it with the rest of their families at home. one should also take note of how the compensation has assisted the co-researchers to buy some of their basic needs for themselves and their households. coming-to-an-end and losing out on what one could call benefits to members can be seen as lost opportunities or resources. part of the lost opportunity was that members will not come together in the future to meet, to support, and learn from each other. lastly, cooperative inquiry provided a platform where members felt valued, a platform where growth has taken place, and they were contributing in a positive manner to the inquiry. while co-researchers were sad about the ending of the process, some of them were empowered to take on new challenges in the future as described under ‘moving on’. the practical activities or the active phases were the most effective because they provided the co-researchers the opportunity to apply and implement the strategies they have reflected on and planned. for instance, manual transfers were planned and then in the action phase a minibus taxi was available, and the minibus taxi drivers had to transfer a wheelchair user into and out of the minibus taxi based on what was decided on by the group. furthermore, the co-researchers observed and made notes of what worked and what did not work. they looked at facial expressions and non-verbal communication when the wheelchair users were transferred into and out of the minibus taxi and shared their observations with each other. this led to further suggestions to improve the transfer technique. regarding the aim of the inquiry, outcomes included communication strategies, different cost and payment options, awareness-raising, home pick up and drop off, a few minibus taxis with different access features such as ramps or hoists and docking stations, transfer techniques, and suggestions for wheelchair storage during transit. these will be described in detail in future articles. strengths and limitations making use of a research assistant that was known to the community and skilled in qualitative research was one of the strengths of this study, as also described by flenady et al. (2022). the research assistant’s knowledge of the context and research methods meant he could support co-researchers in an appropriate manner. conducting home visits as part of the recruitment process created a firm foundation for building rapport, which fostered authentic participation on behalf of co-researchers. having two whatsapp communication groups instead of one might have been a limitation as greater group cohesion might have been achieved with all participants sharing the same group. conclusion and recommendations cooperative inquiry methodology can bring people together in a positive way to facilitate social change. the ability of cooperative inquiry to give voice to marginalised groups and break down power imbalances, as shown in this inquiry where wheelchair users and minibus taxi drivers became co-researchers, makes it suitable for researching practical issues, such as access to minibus taxis for wheelchair users, at community level. it provides an opportunity for people with differing viewpoints to collaborate in a non-threatening space. co-researchers can develop an understanding of one another’s perspective and jointly create practical solutions that are agreeable to all. true collaboration, knowledge sharing and co-construction of knowledge require explicit facilitation throughout the inquiry. it is key to develop the belief among co-researchers that everyone has meaningful contributions to make. each member in the group should have confidence in their own opinion and be spontaneous in sharing their views. at the same time, everyone should be open to consider differing opinions. cooperative inquiry is recommended as a strategy that can be used in research and projects to assist marginalised groups to develop practical solutions to the challenges they face. acknowledgements the corresponding author, j.p.f., acknowledges all the co-researchers for providing their consent and willingness to participate in the inquiry. the author also acknowledges rev j. pansegrouw for the availability of the venue, ms m. johnson for her support, and mandy fredericks for assisting with logistics. the author would also like to show his gratitude to his supervisors surona visagie and lana van niekerk, and research assistant hamilton pharaoh. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.p.f. formulated the research aim and objectives with the primary study leader s.v. j.pf. also contributed to the conception and design of the work, collected the data, was involved in transcription, translation and analysis of the data, and contributed to the writing of the manuscript. s.v. and l.n. provided academic guidance, mentorship, supervisions and editing contributions throughout the research including the formulation of the objectives, design of the work, and data analysis; they contributed to the writing and editing 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poelina, a. & palmer, d., 2020, ‘sharing a place-based indigenous methodology and learnings’, environmental education research 26(7), 917–934. https://doi.org/10.1080/13504622.2020.1773407 abstract background methods results discussion conclusion acknowledgements references addendum: themes of the first six afrinead conferences and hosting countries footnotes about the author(s) callista k. kahonde department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa gubela mji department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation kahonde, c.k. & mji, g., 2024, ‘disability research in african network for evidence-to-action in disability affiliated countries’, african journal of disability 13(0), a1517. https://doi.org/10.4102/ajod.v13i0.1517 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa’, under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research disability research in african network for evidence-to-action in disability affiliated countries callista k. kahonde, gubela mji received: 08 july 2024; accepted: 02 oct. 2024; published: 08 nov. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the african network for evidence-to-action in disability (afrinead) is a leading role player in africa promoting evidence-informed policies and practices for disability inclusion on the continent. this article presents findings of a desktop review that explored trends of disability research in the afrinead affiliated countries. objectives: the review explored trends of research that has been published by members of the disability research community who are contributing to afrinead conferences. method: a google scholar search was conducted using names of researchers who presented articles at the first six afrinead conferences, recording peer-reviewed journal publications by each author according to the eight afrinead research focus areas. this was followed by a hand search of all articles published in the african journal of disability from afrinead affiliated countries. results: there is an exponential increase in the number of peer reviewed journal publications from afrinead affiliated countries over the last two decades. collaborations are common among authors within the same african country. international collaborations are common among authors from africa with authors from the global north. conclusion: african researchers need to network and collaborate more across africa, to promote disability research in countries where research is scarce and to focus more on research areas that are not receiving attention. contribution: the desktop exploration is a first step for afrinead to get a baseline understanding of published disability research in the countries affiliated to the network. further research is required to understand these trends and to provide evidence necessary to address the identified gaps. keywords: disability research; africa; african network for evidence-to-action in disability; afrinead; collaborations. background persons with disabilities experience marginalisation and discrimination globally (grue 2019; world health organization [who] 2022). the advent of disability rights and advocacy discourses and frameworks such as the united nations convention on the rights of persons with disabilities (uncrpd), which is the major treaty that guides disability practice in the world, has raised society’s consciousness of the need for disability-inclusive practices and policy frameworks (united nations [un] 2006). however, this shift still needs to be supported by more research evidence to inform policies and their accompanying practices globally and more so on the african continent where disability has been at the bottom rung of the development agenda (grech & soldatic 2016). the african network for evidence-to-action in disability (afrinead) is a prominent role player on the continent, working to promote evidence-informed policies and practices for disability inclusion in africa (kachaje et al. 2014). african network for evidence-to-action in disability, based at the division of disability and rehabilitation studies (ddrs) at stellenbosch university, was incepted in november 2007. the network seeks solutions to remove obstacles and barriers faced by persons with disabilities. it focusses on bridging the practical ‘know-how’ of persons with disabilities and research evidence by bringing together a broad range of relevant stakeholders to facilitate translation of disability research evidence into policy and practice for the realisation of the rights of persons with disabilities in the african continent. it uses networking as a channel to facilitate sharing and development of disability research among researchers and persons with disabilities on the continent. we refer the reader to past articles that outline the foundations of the network for more information on the history of the network (kachaje et al. 2014; mji et al. 2009, 2011). at its core, afrinead strives to promote the realisation of the uncrpd principles in africa through its four main pillars, namely, triennial conferences, the african journal of disability (ajod), ongoing networking and disability research country working groups (drcwgs; see afrinead website: https://blogs.sun.ac.za/afrinead/). this article presents findings of an exploratory desktop study that was conducted to establish the trends of disability research in countries that are affiliated1 to afrinead. the countries include cameroon, lesotho, democratic republic of congo (drc), south africa, malawi, ghana, zimbabwe, botswana, ethiopia, kenya, namibia, nigeria, rwanda, sierra leone, sudan, tanzania, uganda and zambia. before presenting the focus of the study and its results, a snapshot of the different activities of the network, which are closely related to the research activities, is presented. african network for evidence-to-action in disability triennial conferences african network for evidence-to-action in disability tables conferences every 3 years where academic researchers and other relevant stakeholders come together to share evidence from their research activities and deliberate on practical ways by which the research evidence can be used to promote the rights of persons with disabilities in africa. at the time of conducting this desktop study, the network had managed to table six2 conferences since its inauguration in 2007. the presentations and discussions were guided by eight research areas that the network established and refined over the 17 years of its existence. the articles of the uncrpd (un 2006) were used as the guiding framework to establish these eight research areas pertinent to the african context. these areas are not directly linked to each specific article of the unrcpd, but they were identified as themes that the network can use to address the different uncrpd articles. the eight areas are listed as follows: assistive technology. children and youth with disabilities. systems of community-based rehabilitation (cbr). development process in africa: poverty, politics, and indigenous knowledge systems. economic empowerment. education: early childhood to tertiary. health and human immunodeficiency virus (hiv) and acquired immunodeficiency syndrome (aids). holistic wellness: sport, recreation, sexuality and spirituality. the african journal of disability a need for a platform to publish research presented at each conference and other research conducted in africa was identified at the 2009 conference. african network for evidence-to-action in disability then partnered with kwame nkrumah national university of technology (knust) and the ddrs stellenbosch university to establish the ajod. the journal has since become an important vehicle for sharing research evidence among african scholars and others from various regions interested in advancing disability research in africa. african network for evidence-to-action in disability successfully publishes an issue every year since 2012, and it is now indexed in more than 10 databases. following each conference, a special issue dedicated to the conference is published and the special issue editorials present an overview of the conference proceedings and the outcome and resolutions in terms of research evidence. networking among disability researchers in africa and partners in other regions members of afrinead have established working relationships and they engage in ongoing networking in between the conferences and at the conferences. networks formed at conferences sometimes contribute to research and advocacy collaborations. the secretariat sends regular updates on the network’s activities via a monthly newsletter and meets with members of disability research country working groups (drcwgs) on a regular basis. between conferences, there is ongoing networking between disability researchers, organisations for persons with disabilities (opds) and civil society on how disability research evidence can be better translated into policy to enhance the well-being of persons with disabilities. disability research country working groups disability research country working groups are local groups within afrinead-affiliated countries that mimic the concept of the main network by bringing together disability researchers and other stakeholders to promote disability research and its implementation within their country. the drcwgs are tasked with packaging the evidence and recommendations from the conferences as relevant to their local contexts and also work on identifying evidence gaps in their countries as well as potential role players in disability research and policy implementation. they receive regular support from the afrinead secretariat and get space to share the status of disability research in their countries at the triennial conferences and to network with other groups. at the time of writing this manuscript, there are eight drcwgs that have been established. these are in the democratic republic of congo, ghana, kenya, south africa, tanzania, uganda, zambia and zimbabwe. through all the activities described earlier, afrinead is a leading role player in africa, promoting the establishment of strong networks and conducting of research and its implementation to ultimately achieve inclusion and realisation of human rights by persons with disabilities. understanding of research trends enables the network and its members to see developments and progress in different countries and across the region and identify gaps that the disability research community needs to focus on. methods data collection data collection was conducted from april to june 2023, following two criteria. firstly, a hand search of names of all the authors who presented at afrinead conferences since its inception in 2007 was conducted. these names were retrieved from the six conferences’ abstract booklets. articles published by these authors were then retrieved from google scholar while recording each article on a microsoft (ms) excel spreadsheet. the details recorded on the spreadsheet were author name and affiliation, year of publication and country of publication or where the study was conducted. secondly, a hand search of all the articles published in the ajod from afrinead-affiliated countries was conducted, starting with the first issue published in 2012 up to june 2023 publications. data were recorded on the same spreadsheet as in the initial phase of data collection. for both stages of data collection, some articles included were written by authors outside africa, but the research was conducted in africa, in one of the afrinead-affiliated countries. for an article to be included to the list, it had to be based on research conducted in at least one of the afrinead-affiliated countries or written by authors from at least one of these countries and had to be published in english. the articles also had to have disability as an issue of human rights, inclusion and social justice as its main focus and not focussed solely on medical and/or therapeutic interventions and practices for persons with disabilities. the study was an exploratory exercise for afrinead to get a baseline understanding of the research trends and did not follow specific standards for reviews. the nature of the study also did not require it to go through ethics approval. the data were categorised into eight ms excel workbooks according to the eight research focus areas developed by afrinead, which were listed earlier. although there are overlaps across the different research focus areas, an article was classified according to what was deemed as the main area of focus of the research. for example, an article could be about children and youth but with a main focus of access to education. such an article would be placed under education. data analysis duplicates were removed before analysis. the articles in each research focus area were analysed using three themes, namely, the country or region where the studies were conducted, years of publication and author affiliations. the sort and filter function in ms excel was used to sort the articles and count number of articles in each category; for example, when looking at year of publication, the number of articles published in each year was filtered for each of the eight focus areas and totals recorded. results the first phase of data collection revealed that there are many researchers who present at afrinead conferences, but their research is not published in peer-reviewed journals as the name searches did not retrieve publications by many of these researchers. in this section, the results are presented under each of the eight focus areas using tables as shown in the following section. theme 1: country/region of publication table 1 shows that south africa has produced a disproportionate number of articles when compared to all the other countries affiliated to afrinead. this is the case across all the focus areas. countries like ghana, malawi, zambia and zimbabwe follow behind south africa, although their total number of publications are still less than a quarter of the contribution from south africa. the region named lmic covers articles that had a focus on lowand low-middle income countries with others outside africa and the region named africa refers to a focus spanning across multiple african countries. table 1: distribution of articles according to country/region of publication. assistive technology has a wide range of geographical spread in terms of the country or region where research was conducted and/or published. unlike the other research focus areas, more articles focussed on more than one country and approached the area of assistive technology with a broader and global perspective. only just about a third of the articles came from a single african country (botswana, ghana, kenya, lesotho, malawi, tanzania, uganda, zimbabwe) followed by those published with a focus spanning multiple continents. the focus area of children and youth has articles published from a wide range of african countries. more than half of these articles came from a single african country (cameroon, ethiopia, ghana, kenya, malawi, namibia, nigeria, south africa, tanzania, uganda, zambia, zimbabwe), followed by a few that had an lmic or african focus or were systematic reviews. articles published on systems of cbr are mostly based on research conducted in a single african country, with a few multi-country studies that are mostly reviews. development processes in africa is one of the focus areas with the highest number of publications retrieved with a total of 158, second to education with a total of 189. countries like zambia, malawi and ghana have at least 10 publications per each country under development processes in africa, which is unusual in other focus areas, although they are way behind south africa, which has a high total of 58. research on economic empowerment is not popular in the retrieved publications. multiple country studies are also scarce under this focus area. education with its 189 articles is the most popular focus area, with more than triple the number of publications in other focus areas. south africa also contributes a disproportionately high number of publications in this area, with zambia and zimbabwe trailing behind south africa with at least 20 articles each. the focus area of health and hiv and aids has more articles focussing on multiple countries in africa than in other areas, coming second after development processes in africa in this row. the research focus area of holistic wellness mostly shows publications from a single african country (ethiopia, ghana, nigeria, rwanda, south africa, uganda, zambia, zimbabwe), with no articles from countries like malawi and cameroon, which are popular in other focus areas. generally, the focus area also tends to have fewer publications in comparison with the other areas. theme 2: year of publication publications started surfacing since the late eighties, and the numbers for a few of the focus areas have continued to rise, especially after 2006. the last phase that the review focussed on from january 2021 to june 2023 also showed a high number of articles across most of the focus areas, although the period is only two and half years. a total of 218 articles were recorded during this two-and-a-half-year period. published assistive technology research happens to be a late comer on the disability research platform in afrinead-affiliated countries, with the first article identified having been published in 2013. since then, there has been a steady increase in research outputs in this area with at least five articles published each year since 2018. children and youth research also started to surface relatively later than other focus areas. there has also been a steady increase in publications over the years although the trends are not consistent as shown by the trends in table 2. table 2: distribution of articles according to year of publication. unlike most of the focus areas, articles on systems of cbr that were retrieved date back to the 1980s and there has been an exponential increase in publications over the years with a more marked increase between 2011 and 2020. thirty articles were published during this period out of the total of 73. development processes in africa has had an exponential increase in number of publications since 1993. it is also one of the focus areas with an early entry onto the research publication platform, but it only started to receive more attention from researchers from 2006. economic empowerment came relatively late on the disability research platform in the countries of focus with articles found only dating from 2004. although the publications are still few, there has been an encouraging steady increase in number of publications focussing on this area from 2004 to 2023. there is also a steep increase in number of publications on education, especially from the year 2011 to date, a period during which 170 were published out of the total of 189. education, across all levels from early to tertiary, is receiving more and more attention from african researchers in afrinead-affiliated countries. publications on health and hiv and aids are increasing, with three times more publications during period 2015–2019 than those recorded for 2005–2009. lastly, of all the eight research focus areas, holistic wellness does not show consistent increase in publications over the years. there is an upward and downward trend in the number of publications over the years since 2006. theme 3: author affiliations most articles were published by authors from a single african country, either at the same institution or in collaboration with others from different institutions in the same country. collaborations between authors with affiliations in africa (see table 3) and those in europe have the second highest number of articles followed by collaborations across different african countries except for the focus area of education. there are few articles whose authors do not have an african affiliation, although the research focussed on an african context. table 3: distribution of articles according to the authors’ affiliations. the same trends shown in the geographical distribution of assistive technology articles are shown in the affiliations of the authors publishing those articles. unlike other research focus areas that have a higher number of articles authored by researchers within the same african country, most of the published assistive technology research is based on collaborations among authors from africa and those from countries in other continents. the collaborations among african countries on their own are minimal. children and youth author affiliations are mostly from within a single african country. articles published by authors from africa and europe collaborating together are more than those co-authored by researchers from different african countries. there are very few articles written jointly by authors from africa and those from australia or united states (us) and/or canada. although most of the studies on systems of cbr retrieved were conducted in african countries, author affiliations show a geographical spread that spans across continents. european affiliations dominate as co-authors of articles with authors from africa within this focus area. more than two-thirds of the articles were written by authors within one african country, and africa to africa collaborations are minimal. there is a higher proportion of authors with affiliations outside africa in development processes in africa, although authors with affiliations from a single african country make almost half the total number of authors. european authors are the most dominant among non-african affiliations within this theme. collaborations across african countries are fewer when compared to african researchers’ collaborations with authors from the global north. more than three quarters of articles under economic empowerment were published by authors within a single african country. the focus area has low numbers of collaborations across different countries both in africa and between african researchers and researchers from other regions of the world. the focus area of education also has more than three quarters of the articles published by authors with an affiliation within a single african country. this is followed by publications where authors from different african countries co-authored. a few articles were published by authors from africa collaborating with authors based in the us, canada, europe or australia, with combinations of africa and us and africa and europe affiliations being more common. health and hiv and aids has a wide range of author affiliation combinations showing collaborations across africa. like most of the other focus areas, collaborations among african countries are scarce. africa with europe and africa with us and/or canada are the most common collaborations combining african authors with non-african authors. holistic wellness has mostly authors from a single african country followed by authors from africa and europe and very few other categories of collaborations. discussion although the results presented in this article are based on an exploratory desktop study, they present a good picture of the current research trends in afrinead-affiliated countries, especially those published by researchers who attend afrinead conferences. across the eight research focus areas, the number of publications is increasing exponentially, except for one area of holistic wellness. the upward trend is more prominent from 2006–2007, coinciding with the period when the uncrpd was adopted (un 2006). it was also around the same time when afrinead was established with an agenda to promote uncrpd principles in africa using research as a vehicle to inform policy and practice (kachaje et al. 2014). we envisage that both the adoption of the uncrpd and the inception of afrinead contributed to the increased focus on disability research in african countries. the launching of the ajod later in 2011 and publication of special issues following each conference also seem to be contributing factors to the upward trend in the number of publications. african network for evidence-to-action in disability also contributed to big collaborative international disability research in countries such as sudan, malawi, namibia and south africa (maclachlan et al. 2014a) and uganda, malawi, ethiopia and sierra leone (maclachlan et al. 2014b). several articles were published from these studies. the different research focus areas are not receiving equal attention from researchers. education and development processes in africa are the two focus areas with large numbers of publications, followed by health and hiv and aids. economic empowerment is the least popular focus area in the research articles retrieved. we acknowledge that it is not possible to explain these trends solely based on the methods used in this desktop exploration. however, we imagine that the increasingly strong focus on inclusive education in many countries (ohajunwa 2022; united nations educational, scientific and cultural organization [unesco] 2020) and the impact of the uncrpd could be major factors pushing research in the two areas with the highest number of publications, respectively. the lack of focus on economic empowerment could reflect the negative attitudes of society towards the right of persons with disabilities to occupy space in the labour market. it could also be that disability researchers focus on areas related to their professional backgrounds and there are not many professions like occupational therapy that are employment-specific. to understand these trends better, we recommend research that explores factors that determine the reasons researchers tend to focus on certain areas of the lives of persons with disabilities and not others. assistive technology, although a latecomer in disability research and only included as a standalone research focus area at afrinead conferences from 2017, shows significant increase in the number of published articles. it however shows less of single african or africa to africa authored articles when compared to other focus areas. the launching of the global cooperation on assistive technology (gate) project (who 2013) seems to have elicited strong international collaborations in this area. this initiative by the who followed global concerns that have risen in recent years pertaining to assistive technology for persons with disabilities and its pivotal role in enabling access to all the other rights and services (mji & edusei 2019; visagie et al. 2022). while drawing from the lessons learned from the international research community, african researchers need to prioritise context relevant issues like adaptation of assistive technology and products and production of technology and products that are suitable and acceptable in the local and indigenous contexts. it is also important that assistive technology should be geared towards improving functionality, participation and social integration of persons with disabilities in africa to ensure that they are not left behind (panda 2024). this requires more collaboration and shared experiences among researchers within africa who live and work in these contexts. collaborations are common among authors within the same african country and seldom across different african countries. international collaborations are common among authors from an african country co-authoring with authors from the global north. one would expect to see more collaborations between african countries compared to the north-south collaborations given the opportunities for networking that afrinead provides (bezzina 2018; dwadwa-henda 2023) but this is not the case. the fact that most academic institutions offering disability studies are in the global north suggests that younger african researchers who study abroad write their articles with supervisors and other colleagues from that region, which might be one plausible explanation to these findings. additionally, the fact that african researchers usually rely on research funding bodies from the global north might mean that the north-south collaborations are preferred better than south-south collaborations. these north-south collaborations can be beneficial as the researchers share knowledge and expertise from the different contexts, but they might perpetuate the power imbalances of global south researchers being passive recipients of theories and research methodologies from the north as argued by previous scholars (ned, dube & swartz 2022). african governments, businesses and research funders need to prioritise funding disability research to promote more independence among african researchers (bezzina 2018). there is also a need for south-south collaborations, which seem to be absent from the findings of this review. south–south collaborations have the potential to encourage and promote ‘sharing of problems and sharing of solutions’ (kerr-muir, lehasa & zondervan 2017), given some of the contextual similarities among countries located within the global south. south africa is by far the highest contributor of articles across the eight research focus areas. the fact that it is a country with two academic institutions with units focussing on disability research coupled with the advancement of disability policy in this country makes disability research a priority. furthermore, having the afrinead secretariat located at an academic institution in south africa with more conferences having been hosted in this country also gives the country an advantage over the other countries. established south african disability researchers should be more active in supporting and strengthening the capacity of researchers in other african countries as afrinead is currently doing via drcwgs. the support should include mentoring novice researchers from other contexts who present at afrinead conferences to write their articles for peer-reviewed publications. currently, as established by this study, many articles that have been presented at the afrinead conferences have not been published in peer-reviewed journals. although the reasons why these authors are not publishing have not been established, it is possible that they lack the skills to write peer-reviewed publications, especially the younger, first-time presenters. countries like malawi, ghana and zimbabwe also show more disability research being published compared to other afrinead-affiliated countries. these countries have also hosted afrinead conferences. it is important to note that ghana also has a disability and rehabilitation programme at knust. as afrinead conferences are tabled in more countries, it is hoped that the presence and influence of the network through its presence in the planning and running of the conferences will encourage more published research conducted in these countries. limitations the use of afrinead conference abstract booklets, google scholar and ajod could have limited the number of articles identified for the exploration. this was because of the limited time available to conduct the review. a more systematic search covering other databases might have yielded more results. however, we believe that the results give a good indication of the trends, which was the main aim of the desktop exploration. we also acknowledge that there are blurry boundaries across afrinead’s research focus areas and some articles would have been suitable for more than one research focus area. we recommend rethinking the focus areas and breaking down of focus areas that are too broad into more focussed sub-areas. we also recommend reviews that conduct a critical analysis of the research evidence, including other types of research like prevalence studies so that the trends of what is known and what is not known can become apparent to inform future research and policy and practice. conclusion this article has shed light on the trends of disability research in countries that have membership in afrinead, especially research published by authors attending afrinead conferences. although we did not employ rigorous systematic review methods, we can conclude that at the level at which this desktop study was conducted, there are few things that are apparent; there is a constant increase in the number of publications, especially in the past two decades; south africa is by far the biggest contributor of disability research articles in afrinead-affiliated countries. other countries like ghana, malawi, zimbabwe and zambia are contributing more than the rest of the other countries. collaborations are more in-country and with countries from the global north and less across african countries. south-south collaborations are rare. some research focus areas are more popular than others, particularly, education and development processes in africa. we see this desktop exploration as a first step for afrinead to get a baseline understanding of disability research in the countries affiliated to the network. further research is required to understand these trends, to do critical analysis of the current research evidence and to provide evidence necessary to address the identified gaps. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions c.k.k. conceptualised the idea, searched for literature sources, drafted the article and reviewed and edited the article. g.m. conceptualised the idea, supervised the project and contributed to the writing of original draft and ongoing editing. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the excel spreadsheet containing data is available from the corresponding author, c.k.k. upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references bezzina, l., 2018, ‘the role of indigenous and external knowledge in development interventions with disabled people in burkina faso: the implications of engaging with lived experiences’, disability and the global south 5(2), 1488–1507. dwadwa-henda, n., 2023, experiences of persons with disabilities of xhosa rituals and traditions, which contribute to health and wellbeing, phd thesis, department of global health, stellenbosch university. grech, s. & soldatic, k., 2016, ‘introduction: disability in the global south’, in s. grech & k. soldatic (eds.), disability in the global south: the critical handbook (pp. xiii–xxviii), springer, cham. grue, j., 2019, ‘inclusive marginalisation? a critical analysis of the concept of disability, its framings and their implications in the united nations convention on the rights of persons with disabilities’, nordic journal of human rights 37(1), 3–17. https://doi.org/10.1080/18918131.2019.1589165 kachaje, r., dube, k., maclachlan, m. & mji, g., 2014, ‘the african network for evidence-to-action on disability: a role player in the realisation of the uncrpd in africa’, african journal of disability 3(2), a86. https://doi.org/10.4102/ajod.v3i2.86 kerr-muir, m., lehasa, a. & zondervan, m., 2017, ‘south-south collaboration for the treatment of avoidable blindness in botswana’, eye news 24(4), 1–4. maclachlan, m., amin, m., mji, g., mannan, h., mcveigh, j., mcauliffe, e. et al., 2014a, ‘learning from doing the equitable project: content, context, process, and impact of a multi-country research project on vulnerable populations in africa’, african journal of disability 3(2), 1–12. https://doi.org/10.4102/ajod.v3i2.89 maclachlan, m., mji, g., chataika, t., wazakili, m., dube, a.k., mulumba, m. et al., 2014b, ‘facilitating disability inclusion in poverty reduction processes: group consensus perspectives from disability stakeholders in uganda, malawi, ethiopia, and sierra leone’, disability and the global south 1(1), 107–127. mji, g. & edusei a., 2019, ‘an introduction to a special issue on the role of assistive technology in social inclusion of persons with disabilities in africa: outcome of the fifth african network for evidence-to-action in disability conference’, african journal of disability 8(1), 1–4. https://doi.org/10.4102/ajod.v8i0.681 mji, g., gcaza, s., swartz, l., maclachlan, m. & hutton, b., 2011, ‘an african way of networking around disability’, disability & society 26(3), 365–368. https://doi.org/10.1080/09687599.2011.560419 mji, g., maclachlan, m., melling-williams, n. & gcaza, s., 2009, ‘realising the rights of disabled people in africa: an introduction to the special issue’, disability and rehabilitation 31(1), 1–6. https://doi.org/10.1080/09638280802280288 ned, l.y., dube, k. & swartz, l., 2022, ‘challenges and opportunities of centring the african voice in disability research’, african journal of disability 11, a1089. https://doi.org/10.4102/ajod.v11i0.1089 ohajunwa, c.o., 2022, ‘local knowledge in inclusive education policies in africa: informing sustainable outcomes’, african journal of disability 11, a941. https://doi.org/10.4102/ajod.v11i0.941 panda, s., 2024, ‘leaving no one behind: achieving the sustainable development goals through accessibility for people with disabilities’, international journal of educational communications and technology 4(1), 16–26. united nations, 2006, convention on the rights of persons with disabilities, viewed 02 february 2024, from https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities. united nations educational, scientific and cultural organization (unesco), 2020, global education monitoring report 2020: inclusion and education: all means all, 92310038, unesco digital library. visagie, s.j., maclachlan, m., scheffler, e. & seymour, n., 2022, ‘promoting regional coherence and cohesion amidst multiple assistive technology initiatives in africa’, african journal of disability 11, 1–7. https://doi.org/10.4102/ajod.v11i0.937 world health organization, 2013, global cooperation on assistive technology (gate), viewed 05 june 2024, from https://www.who.int/initiatives/global-cooperation-on-assistive-technology-(gate). world health organization, 2022, global report on health equity for persons with disabilities, world health organization. addendum: themes of the first six afrinead conferences and hosting countries 2007: ‘realising the rights of disabled people in africa’: cape town, south africa. 2009: ‘the abc of research evidence-to-action: putting united nations convention on the rights of persons with disabilities (uncrpd) principles into action for a rights-based change’: cape town, south africa. 2011: ‘building communities of trust: evidence–to-action in disability research’: victoria falls, zimbabwe. 2014: ‘intensifying disability research and practice to achieve mdgs (millennium development goals) in africa: our experience and aspirations for the future’: mangochi, malawi. 2017: ‘disability and inclusion in africa: the role of assistive technology’: kumasi, ghana. 2020: virtual: ‘disability unplugged-beyond conventions and charters: what really matters to persons with disabilities in africa’: cape town, south africa. footnotes 1. these are countries that have people who are members of afrinead in their own capacity as individuals or as members of organisations focussing on disability issues. 2. see addendum for details of the six conferences. http://www.ajod.org open access page 1 of 2 reviewer acknowledgement acknowledgement to reviewers in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on https://ajod.org for our files, allowing us better access to your areas 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toto siyabulela mkabile soraya maart stephanie c. pillay stephen nhuta sthembiso blose sue statham surona j. visagie talia mayson tamara chansa-kabali tanya l. bekker tarek m. nasrallah tawagidu mohammed terry j. ellapen theresa lorenzo tonderai w. shumba tongai f. chichaya tron v. tronstad vanessa abrahamson victor de andrade vuyokazi singapi william nketsia wisdom k. mprah zara trafford zimbini ogle http://www.ajod.org� acknowledgement to reviewers article information authors: marcia lyner-cleophas1 estelle swart2 tsitsi chataika3 diane bell4 affiliations: 1centre for student counselling and development, stellenbosch university, south africa2department of educational psychology, stellenbosch university, south africa 3department of educational foundations, university of zimbabwe, zimbabwe 4academic affairs, stellenbosch university business school, south africa correspondence to: marcia lyner-cleophas postal address: centre for student counselling and development, private bag x1, matieland 7602, south africa dates: received: 18 july 2013 accepted: 29 nov. 2013 published: 04 june 2014 how to cite this article: lyner-cleophas, m., swart, e., chataika, t. & bell, d., 2014, ‘increasing access into higher education: insights from the 2011 african network on evidence-to-action on disability symposium – education commission’, african journal of disability 3(2), art. #78, 3 pages. http://dx.doi.org/10.4102/ ajod.v3i2.78 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. increasing access into higher education: insights from the 2011 african network on evidence-to-action on disability symposium – education commission in this original research... open access • abstract • introduction • increasing access of students with disabilities in higher education • realigning the educational psychologist’s role to promote access into higher education • struggles and coping mechanisms of students with disabilities in higher education • conclusion • acknowledgements    • competing interests    • authors' contributions • references abstract top ↑ this article provides some insights into the challenges regarding inclusion in higher education of students with disabilities. it does this by elucidating aspects of the proceedings of the education commission at the african network on evidence-to-action on disability (afrinead) symposium, which took place in zimbabwe in november 2011. the presentations specifically focused on the education of people with disabilities from early childhood through to higher education. this article, however, is informed by presentations focusing on increasing access to higher education. the article is focused on the implementation of evidence in practice, research and policies stemming from rigorous debate and scientific foundations, whilst taking into account the dynamic realities of the higher education context. themes such as the systemic approach needed for inclusion to be successful, increasing access and the dynamic role of students with disabilities are highlighted. introduction top ↑ access to higher education for people with disabilities presents opportunities as well as challenges. since the move towards inclusion after the introduction of the salamanca statement and framework for action on special needs education (united nations educational, scientific and cultural organization [unesco] 1994), higher education has had to grapple with a range of new developments on national and local levels to meet the increasing influx of students continuing into the tertiary education sector. higher education endeavours to promote inclusion and the participation of a diverse student group, but faces several challenges. the onset of the global human rights discourse during the latter part of the 20th century has brought about new ways of having to address marginalised communities, such as people with disabilities. it has become necessary to review current educational practices; hence the call for inclusivity and participation, which are vital for human dignity and human rights. the south african white paper on post-school education and training (department of higher education and training 2013) notes that despite national attempts at policies that include people with disabilities, higher education still manages disability support in a fragmented way, as if it is separate from existing transformation and diversity programmes. this policy notes the importance of including support staff, management and lecturers in the process of disability inclusion, thus pointing to a systemic approach to inclusion.research shows that education is a major determinant of an individual’s societal status and social mobility, as it influences career prospects, and that higher education is considered a gateway to a better future (chataika 2010). however, for social mobility to be realised, society and its range of systems need to be galvanised to think and act inclusively. the presentations discussed in this article highlight four themes: the promotion of inclusive practices; the importance of a systemic approach to facilitate inclusive practices; ways of increasing access to higher education; and the dynamic role of the individual in interaction with the systems. the authors share ways of increasing access for students with disabilities in higher education by highlighting the systems involved in the process. they also point out that the facilitation of such access involves a range of role players in the various systems, including the changed role of educational psychologists. the authors also emphasise the resilience of individuals in the process of inclusion, but caution against students having to battle against the many systems in higher education to achieve inclusion. the kind of integration of support that fosters inclusion with a focus on the range of systems is conceptualised well within bronfenbrenner’s bio-ecological model (ceci 2006). bronfenbrenner highlights four dimensions when contextualising a person; according to him, people’s experiences are influenced by the context of time, space, processes and personal characteristics. these have a dynamic effect on each other and take place on various levels in society. the micro-level involves the person, whilst the meso-level involves other systems such as education. at the macro-level, policies influence what happens on the other levels. the four themes noted in the previous paragraph are well placed within this model as these are impacted by the range of ecological systems within which people function. increasing access of students with disabilities in higher education top ↑ traditionally, limited attention has been placed on addressing issues of access, retention, progression and participation of students with disabilities within higher education institutions (heis). the disability in higher education project, conducted by the foundation of tertiary institutions of the northern metropolis (fotim) from 2009 until 2011, therefore focused on describing and analysing the role and functioning of specialised disability units at various universities in south africa and how they interact with the various systems within the universities to foster inclusive practices (bell 2011). the fotim research project included data from 15 disability units at 23 heis in south africa. a key finding of this project was that disability units in most universities formed part of student counselling services or the student affairs department, which made their autonomous functioning difficult. this influenced their effectiveness as they were not given sufficient independence to develop relevant programmes. the association with student counselling services often reinforces the medical model of disability which seeks to pathologise, rehabilitate and remediate people with disabilities without focusing on disabling environments. more autonomous functioning could foster better campus-wide communication and more interaction with other departments and systems that students interact with, given the cross-cutting nature of disability. other important insights included the continued inaccessibility of key buildings such as the library, the lack of awareness of university staff regarding disability policies and practices, and inadequate funding from the department of higher education and training to promote access and inclusion (fotim 2011:45). these are some of the critical systems within which successful inclusion can take place. one of the project’s recommendations was that functional independent disability units were essential in order to facilitate the inclusion of students with disabilities since faculties and departments struggle to deal with this in isolation. autonomous disability units, with a direct reporting line to the registrar or deputy vice-chancellor, would allow for the participation of academics at a higher level of negotiation for necessary resources and awareness, which could help to effect meaningful inclusion of students in the various faculties. the department of higher education and training should explore appropriate funding mechanisms to financially assist universities to enable the promotion of disability inclusion through accommodating and including students (and staff) with disabilities. although there is a strong legislative and policy framework in south africa, implementation is slow. a further recommendation based on international experience speaks to the need for a specific disability anti-discriminatory act, which should be enacted at a national level in order to raise the profile of disability issues and bring them to the fore as a compliance imperative (fotim 2011:21). the fotim research report concludes that it is critical that the disability agenda needs to be entrenched in the way in which heis function as a whole. also, in order to promote access to higher education, disability inclusion must be fully embedded in the overall functioning of the university at all levels. realigning the educational psychologist’s role to promote access into higher education top ↑ lyner-cleophas and swart (2011) examined the role of the educational psychologist as a role-player in the promotion of human rights and inclusion, guided by the revised practice framework of the health professions council of south africa (hpcsa) (department of health 2011). they argue that educational psychologists can play an important role in developing inclusive practices in education. traditionally, the role of educational psychologists was mainly to diagnose learning problems, facilitate educational placements and to assist with ‘remedies’ so that learners would fit into the system. these roles were embedded in the medical model of disability referred to earlier, which is deficit-based and exclusionary (oliver 2009; swartz & watermeyer 2006). educational psychologists are currently realigning their role to work within a bio-ecological model where the focus is within the range of systems and the dynamic interaction between these systems and its impact on persons with disabilities. these professionals work with learners across their life-span, and can therefore support the transitioning of learners with disabilities from secondary school to higher education from a bio-ecological perspective. their role within bronfenbrenner’s bio-ecological framework (ceci 2006) involves preparing the learner as well as the various systems in higher education, at a micro-, mesoand macro-level. educational psychologists are strategic role-players in developing support and inclusive practices in higher education, together with campus departments (academic, support and administrative staff). they can also influence strategies and policy at a national level by way of bodies like the higher education disability services association (hedsa 2010) and the hpcsa. these play a strong advisory and developmental role in the transformative and inclusive way of working, which aims at re-conceptualising values and beliefs that celebrate diversity. advocacy and community education have become very important as well as the development role when transitioning into the various educational phases, including higher education. educational psychologists can also play a vital role in the training of staff regarding inclusion in higher education. struggles and coping mechanisms of students with disabilities in higher education top ↑ part of the bio-ecological framework framing our thinking is the position of the individual at a micro-level, which should not be underestimated. chataika (2010) studied personal experiences of students with disabilities in higher education in zimbabwe. she established that they continue to face attitudinal, physical and institutional barriers. the study further revealed that the students have the ability to develop coping mechanisms that help them reach their educational goals. a positive attitude and self-advocacy skills were seen as the most important factors in determining the success of students with disabilities in higher education. similarly, self-determination or self-belief was seen as a vehicle to success. however, chataika (2011) calls for improved policy and practice to ensure meaningful disability inclusion in education, without students with disabilities becoming ‘superheroes’ who spend most of their time trying to surmount a myriad of barriers that are common in most universities. conclusion top ↑ in this article, we briefly presented some of the insights gained from the education commission at the 2011 afrinead symposium. evidence of challenges in implementing inclusive practices systemically in higher education, ranging from a policy environment without monitoring and oversight functions, the under-involvement of disability units, to challenges with physical infrastructure and funding, were shared. recommendations for improving inclusive practices and access to higher education for students with disabilities included improved policy development and practices across bio-ecological systems such as government, university support departments and faculties. there is also a need to monitor policy implementation across university campuses in africa. the various systems need to work together to promote an inclusive higher education experience for students that is accessible on a range of levels. the process of inclusion takes time, and the resilience of students who engage in self-advocacy in the process cannot be underestimated. however, they may not serve as a reason for stalling inclusivity across campuses. inclusion can be realised effectively when policy-makers and universities develop related policies by including relevant stakeholders to ensure campus-wide inclusive practices. our hope is to see policy-makers, people with disabilities, academics, researchers and other stakeholders earnestly engage with issues raised in this article. this will subsequently contribute to the theoretical concept, increased access and meaningful inclusion and participation of students with disabilities in higher education through the development and enactment of inclusive legislation in africa. ultimately, we hope that increased enrolment of students with disabilities in higher education will be realised. acknowledgements top ↑ the authors wish to thank prof. leslie swartz for his financial contribution to this article from research funds. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions m.l.-c. (stellenbosch university) was the project leader in writing the article, whilst e.s. (stellenbosch university), t.c. (university of zimbabwe) and d.b. (stellenbosch university business school) served as co-contributors to the article. references top ↑ bell, d., 2011, ‘disability in higher education: the role of disability units, student experiences and beyond 2011 (fotim project)’, paper presented at the third biennial afrinead symposium, elephant hills, victoria falls, zimbabwe, 29 november 2011. ceci, s.j., 2006, ‘urie bronfenbrenner (1917–2005): obituary’, american psychologist 61(2), 173–174. http://dx.doi.org/10.1037/0003-066x.61.2.173 chataika, t., 2010, ‘inclusion of disabled students in higher education in zimbabwe’, in j. lavia & m. moore (eds.), cross-cultural perspectives on policy and practice: decolonizing community contexts, pp. 116–131, routledge, new york. chataika, t., 2011, ‘voices of disabled students in higher education in zimbabwe: struggles and coping mechanisms’, paper presented at the third biennial afrinead symposium, elephant hills, victoria falls, zimbabwe, 29 november 2011. department of higher education and training, 2013, white paper on post-school education and training, viewed 22 august 2013, from http://www.info.gov.za/view/downloadfileaction?id=157779 department of health, 2011, ‘regulations defining the scope of the profession of psychology (regulation 704)’, government gazette 34581, pretoria. foundation of tertiary institutions of the northern metropolis (fotim), 2011, disability in higher education project report, viewed 24 october 2011, from http://www.uct.ac.za/usr/disability/reports/progress_report10_11.pdf higher and further education disability services association (hedsa), 2010, about hedsa, viewed 17 july 2013, from http://www.hedsa.org.za lyner-cleophas, m. & swart, e., 2011, ‘the educational psychologist in the social model: changes and challenges’, paper presented at the third biennial afrinead symposium, elephant hills, victoria falls, zimbabwe, 29 november 2011. oliver, m., 2009, understanding disability – from theory to practice, palgrave macmillan, hampshire. swartz, l. & watermeyer, b., 2006, ‘introduction and overview’, in b. watermeyer, l. swartz, t. lorenzo, m. schneider & m. priestley (eds.), disability and social change – a south african agenda, pp. 1–6, hsrc press, cape town. united nations educational, scientific and cultural organization (unesco), 1994, the salamanca statement and framework for action on special needs education, viewed 24 october 2013, from http://www.unesco.org/education/pdf/salama_e article information authors: surona visagie1 tecla mlambo2 judith van der veen3 clement nhunzvi2 deborah tigere3 elsje scheffler1 affiliations: 1centre for rehabilitation studies, stellenbosch university, south africa 2college of health sciences, university of zimbabwe, zimbabwe 3cbm africa, east london, south africa correspondence to: surona visagie email: surona@telkomsa.net postal address: po box 40, fraserburg 6960, south africa dates: received: 30 jun. 2015 accepted: 26 sep. 2015 published: 20 nov. 2015 how to cite this article: visagie, s., mlambo, t., van der veen, j., nhunzvi, c., tigere, d. & scheffler, e., 2015, ‘is any wheelchair better than no wheelchair? a zimbabwean perspective’, african journal of disability 4(1), art. #201, 10 pages. http://dx.doi.org/10.4102/ajod.v4i1.201 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. is any wheelchair better than no wheelchair? a zimbabwean perspective in this original research... open access • abstract • introduction • zimbabwean context • methods    • quantitative phase    • qualitative phase       • ethical considerations • results    • demographic information    • wheelchair provision    • satisfaction of adult users    • satisfaction of child users    • function • discussion    • limitations • recommendations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references • footnotes abstract top ↑ background: within a rights-based paradigm, wheelchairs are essential in the promotion of user autonomy, dignity, freedom, inclusion and participation. objectives: this paper aimed to describe a group of zimbabwean wheelchair users’ satisfaction with wheelchairs, wheelchair services and wheelchair function. method: a mixed method, descriptive study was done. quantitative data was collected from 94 consecutively sampled wheelchair users, who accessed wheelchair services at 16 clinics in five zimbabwean provinces between october 2013 and february 2014, using the quebec user evaluation of satisfaction with assistive technology for adults and children and functioning every day with a wheelchair questionnaire. qualitative data were collected through two focus group discussions (22 participants) and two case studies with participants purposively sampled from those who participated in the quantitative phase. results: more than 60% of participants were dissatisfied with the following wheelchair features: durability (78.6%), weight (75.6%), ease of adjustment (69.1%), effectiveness (69.0%), safety (66.7%), reliability (66.7%), and meeting user needs (60.6%). similarly, more than 66% of participants were dissatisfied with various services aspects: professional services (69.0%), follow-up (67.0%), and service delivery (68.3%). although 60% of participants agreed that the wheelchair contributed to specific functions, more than 50% of participants indicated that the features of the wheelchair did not allow in(53.2%) and outdoor (52.7%) mobility. conclusion: findings indicate high levels of dissatisfaction with wheelchair features and services, as well as mobility. it is recommended that policy and minimum service standards which incorporate evidence and good practice guidelines for wheelchair services and management of wheelchair donations are developed for zimbabwe. introduction top ↑ according to borg, larsson and ö stergren (2011:165), assistive technology, which includes wheelchairs, ‘has been a missing bridge along the road to human rights and development … for many people, particularly in low-income countries’. the united nations convention on the rights of persons with disabilities (uncrpd) (un 2006) specifically refers to the provision of assistive technology in five articles (borg et al. 2011), with article 20 focusing on personal mobility (un 2006). for people with no or limited ability to walk, wheelchairs can enhance function and independence and may open opportunities for work and leisure which otherwise might have been impossible. within a rights-based paradigm, wheelchairs are therefore essential tools in the promotion of user autonomy, dignity, freedom, inclusion and participation (borg et al. 2011). function in a wheelchair is, however, dependent on a complex interaction between user characteristics, activities and social roles, the environment, wheelchair features as well as user assessment and training (routhier et al. 2003). thus wheelchairs should be appropriate to the users’ functional, environmental, posture support and durability needs (pearlman et al. 2008; who 2008). comprehensive rehabilitation and wheelchair services, as well as trained personnel are instrumental in providing appropriate wheelchairs and achieving right-based outcomes (who 2008). persons with mobility impairments in southern africa have limited access to appropriate wheelchairs and wheelchair services (eide & ø derud 2009; eide et al. 2011; visagie, scheffler & schneider 2013) with demand surpassing supply. donor organisations often attempt to fill this void by donating wheelchairs in bulk, mostly basic folding and basic non-folding frame designs as shown in the examples in figure 1. figure 1: examples of the basic folding (left) and non-folding (right) wheelchairs provided by donor organisations.source: figure provided by elsje scheffler. the basic folding frame design is essentially for temporary or low active indoor use. apart from height adjustable footplates, it lacks adjustability to optimise fit, posture support and function and is not appropriate for active use in less resourced settings (eide & ø derud 2009; mukherjee & samanta 2005; pearlman et al. 2008; toro et al. 2012). the non-folding wheelchair has a solid seat system, offers no adjustability and has a similar ergonomic design and thus shortcomings as the basic folding frame wheelchair (mukherjee & samanta 2005). despite the limited gains in function and independence offered by these wheelchairs as described by shore and juillerat (2012), the limitations of these designs fuel the longstanding and ongoing debate on whether 'something is better than nothing’ (pearlman et al. 2008; rotary international 2014; who 2006). in january 2012 the comprehensive mobility support project (cmsp) was implemented in zimbabwe by the jairos jiri association in partnership with christian blind mission (cbm) and the ministry of health and child welfare (mohcw n.d.). financial support was provided by usaid. the aim of the project was to improve the quality of life of persons with mobility impairments in zimbabwe by developing capacity and providing appropriate comprehensive wheelchair services. this paper presents baseline data collected during the cmsp and aims to add to the debate on whether any wheelchair is better than no wheelchair by describing satisfaction with wheelchairs, wheelchair services and wheelchair function of a group of zimbabwean wheelchair users of primarily basic folding and rigid frame wheelchairs. zimbabwean context top ↑ zimbabwe is a landlocked country in southern africa covering 390 757 km2. it is divided into 10 provinces of which two, bulawayo and harare, are cities with provincial status (figure 2). zimbabwe has a population of 13 million with a population density of 33 persons per square kilometre. sixty-seven percent of the population live in rural areas. the life expectancy at birth is 38 years. approximately 6% of the population live with a disability, of these 35.9% have difficulty moving and might require a wheelchair (zimstat 2013). figure 2: a map of zimbabwe and its provinces. the majority of zimbabweans are dependent on public healthcare provided by the mohcw, complemented by non-governmental organisations and a small private sector (mohcw n.d.). rehabilitation services are provided by occupational and physiotherapists in urban centres, as well as rehabilitation technicians who are the primary providers in rural areas at the district hospitals and community-based rehabilitation (cbr) programmes. rehabilitation technicians outnumber therapists at a ratio of approximately 2:1 (personal communication with medical rehabilitation practitioners’ council of zimbabwe, 09/04/2015). a situational analysis by the cmsp team found that zimbabwe had no policy on wheelchair service provision and that wheelchair services were fragmented and poorly integrated in rehabilitation services. limited numbers of wheelchairs were provided by hospitals as part of rehabilitation services, or purchased directly from retail shops. however, many wheelchairs were donated by non-governmental organisations, churches and politicians without any clinical or follow-up support services. methods top ↑ the study comprised a descriptive design with a quantitative and qualitative phase and is part of a larger mixed method descriptive study with a pre-test post-test component. a sequential explanatory strategy where qualitative data were collected after quantitative data in order to explore and contextualise quantitative findings through the experiences and perceptions of individual participants (kroll, neri & miller 2005) was used. the larger study commenced in october 2013 and was completed in may 2014. this paper focuses on wheelchair users’ experiences prior to the implementation of the comprehensive mobility support project (cmsp) in 16 clinics. data presented in this paper were collected between 30 october 2013 and 28 february 2014 at the 16 clinics in the zimbabwean provinces of harare, mashonaland east, matabeleland south, bulawayo and masvingo where the cmsp was to be implemented. quantitative phase all 135 persons who accessed the selected clinics for a wheelchair between 30 october 2013 and 28 february 2014 were consecutively recruited to participate in the study. in order to be included in the study users had to be basic1 or intermediate2 level manual wheelchair users and they were to have accessed services at one of the cmsp seating clinics during the study period. only the findings of the 94 existing wheelchair users are presented in this paper, since they were the only participants with previous experience of wheelchair use and wheelchair service delivery. data collection tools included a self-designed demographic questionnaire and three standardised questionnaires: the quebec user evaluation of satisfaction with assistive technology (quest 2.0) for adults (demers, weiss-lambrou & ska 2000), the quest 2.1 for children (murchland, kernot & parkyn 2011) and functioning every day with a wheelchair (few) questionnaire (mills, holm & schmeler 2007). the self-designed demographic questionnaire was used to gather socio-demographic and clinical information. the quest 2.0 assesses user satisfaction with assistive technology. of the 12 questions, eight address satisfaction with the device (dimensions, weight, adjustments, safety, durability, simplicity of use, comfort, and effectiveness) and four address satisfaction with the service provision process (service delivery, repairs/servicing, professional service and follow-up services). the quest 2.0 was found valid and reliable in global north settings (demers et al. 2002). the children`s version (quest 2.1) was derived from the quest 2.0 and validated for use with children in a global north setting (murchland et al. 2011). three features, namely ease of adjustment, safety and comfort, are not included in the quest 2.1 for children. instead, it includes ease to move, appearance and time required to set up the device. adult users rate their satisfaction with various features of the device on a 5-point likert scale. according to the quest 2.0, manual, items which require attention are those where ’at least 25% to 33% of users report that they are only “somewhat satisfied”, ”dissatisfied”, or ”very dissatisfied”’ (demers et al. 2000:28). the 5-point rating scale of the quest 2.0 was therefore collapsed into two categories, that is, ‘quite or very satisfied’, and ‘somewhat satisfied’, ‘dissatisfied’, or ‘very dissatisfied’ as was done by previous authors (bergstrom & samuelsson 2006; samuelsson & wressle 2008). children use a 7-point pictorial likert scale. users also select the three features they consider most important. the few assesses users’ perceptions of the impact of the wheelchair on their function. ten items are rated on a 6-point likert scale with an additional ‘does not apply’ option. the few has been found to capture 96.9% to 99.7% of users’ goals in wheelchair use with moderate precision for test-retest reliability (mills et al. 2007). the data collection tools were translated into shona and ndebele, the main local languages in zimbabwe. the forward translations were done by two qualified occupational therapists who were native shona and ndebele speakers. a multi-linguist from the medical research council of zimbabwe reviewed and compared both translations to the original english versions for correctness and consistency. twenty-five trained research assistants collected the data. of these, 17 were also service providers at the clinics. quantitative data were coded and entered into microsoft excel. data are presented in percentages and summarised in figures and graphs. qualitative phase qualitative data on user satisfaction and function were collected through two focus group discussions and two case studies. the participants were purposively selected by the research team based on perceptions formed about the richness of information they could offer. discussion guides were used in both focus groups and case study interviews to ensure in-depth exploration of the issues under study. the main topics explored were: participants’ experiences and problems as wheelchair users in life situations satisfaction with their wheelchairs how the experience of wheelchair users in zimbabwe can be improved. focus group participants included users, family members/caregivers, and service providers. one focus group discussion was held in a rural setting in masvingo province in january 2014 with ten participants and the other in an urban setting in harare province in april 2014 with 12 participants. each focus group lasted about four hours. the two case study participants included a nine-year-old boy and a 26-year-old woman. data collection included participant observation and in-depth interviews over a number of visits during the study period. the focus group discussions and case study interviews were audio-recorded and transcribed verbatim. as the purpose of the qualitative data was to explore and contextualise quantitative findings narrative examples from the transcripts are presented with the quantitative results. ethical considerations ethical approval was granted by the joint research ethics committee (jrec/323/13) of the university of zimbabwe, college of health sciences and by the medical research council of zimbabwe (mrcz/a/1813). written informed consent from wheelchair users, parents, guardians or caregivers, as appropriate, as well as assent from child participants was sought. parents, guardians and/or caregivers became proxy respondents for adult and child participants who were unable to communicate or understand due to the nature of their disabilities. the informed consent documents included permission to audio record focus group and case study interviews. participation was voluntary and participant privacy and confidentiality were maintained. results top ↑ demographic information fifty (53%) of the participants were children and 44 (47%) adults. the median age of the study participants was 16 years (interquartile range: 11 to 42). the majority (57%) were men. forty-nine percent of the participants had cerebral palsy (table 1). sixteen percent of adult participants were either formally or informally employed. of the 50 children, 29 (58%) were attending school. reasons for not attending school included no suitable school or resources to accommodate learners using wheelchairs, a lack of transport, the nature of the disability, parents not seeing the need for schooling, and financial challenges. the majority of users 47 (50%) were living in rural areas with 39 (42%) living in urban areas and the rest living in peri-urban areas. table 1: health conditions necessitating the use of a wheelchair (n = 94). the majority (79%) of participants was dependent on public transport, whilst 9% used private transport and 12% used both modalities. the qualitative data particularly highlighted how non-folding wheelchair designs resulted in users being excluded from community participation through transport challenges. … if you cannot fold it … they (transport crew) won`t allow you in … they don`t have space for it … you are then forced not to travel … (woman, 26, user) … with the non-foldable, my major challenge is with transportation … when the chair can`t fit in the commuter-omnibus, i am forced to leave it when travelling … travelling without the wheelchair … you can just imagine! (man, 27, user) folding designs were more readily transported: … and the fact that it's foldable is very important for us … it means we can put it in a ’combi’ (commuter omnibus) and we can go to church with her … (woman, 39, caregiver) wheelchair provision wheelchairs were primarily (45%) supplied by rehabilitation technicians, followed by wheelchair technicians (5%) and therapists (5%) (table 2). others included two doctors, a headmistress, a carpenter and relatives/family/friends. twenty-seven percent of participants did not know who supplied their wheelchair. the majority of participants used a wheelchair with a basic folding and non-folding design (figure 1). as the impact of these wheelchairs on user satisfaction and function was studied, the global effect of these common wheelchair features are presented, rather than information related to numbers and types of wheelchairs. table 2: : profession of person supplying the wheelchair as reported by users (n = 94). the majority of the study participants (89.7%) had received their wheelchair as a donation, 8% had bought it from a retailer, and 2.3% had borrowed a wheelchair. although challenges of fit, posture support, function and safety were often mentioned, users expressed gratitude and satisfaction at being offered mobility. 9-year-old jay's (case study participant) mother explained her satisfaction with a donated wheelchair despite needing someone almost full time to frequently reposition jay and to assist him to move around: ‘satisfaction with the wheelchair was high, maybe because we didn’t know what to expect from it other than to ferry jay around’ (woman, 47, caregiver). according to focus group participants, wheelchair provision was not supported by a comprehensive wheelchair service. they received no formal assessment, prescription, fitting or training, and both maintenance and follow-up services were limited. … to function well … you need proper training in real life settings, even advice given at the clinic is not enough … with my donated wheelchair, i didn`t get any training and it was not easy to use it … (man, 35, user) satisfaction of adult users more than 60% of adults were dissatisfied with every feature of their wheelchair, except for comfort, which 51% found satisfactory. dissatisfaction was especially high with durability (78.6%), weight (75.6%), ease of adjustment (69.1%), effectiveness (69%) and safety (66.7%) (figure 3). figure 3: percentage of adult users who were very or quite satisfied with their wheelchair and wheelchair services according to the quest 2.0 (n = 44). qualitative data highlighted the effect of poor durability on function: ‘inflatable tyres lose pressure easily and you don`t get where you want to go or do what you want to do …’ (man, 41, user). poor durability, combined with limited repair services and knowledge in maintenance may have safety implications: ‘my wheelchair broke down some time back and i was tying it with rags’ (woman, 63, user). users associated wheelchair design with durability, albeit limited to rigidity only: ‘… foldable ones are not durable, but they work best when it comes to transportation and access …’ (man, 44, user and provider). the fixed footand armrests on some wheelchairs limited certain functions, whilst the limited size ranges affected fit, comfort and posture support: ‘my wheelchair was inappropriate for me’; ‘it was too small and i could hardly endure sitting in it for long’. (woman, 39, user); ‘… the right size with all safety features is important to me … i think it's because i used to fall a lot …’ (man, 25, user). although half the participants were satisfied with repair services, more than two-thirds were not satisfied with service delivery, professional services and follow-up (figure 3). qualitative data showed that users were not consulted about their needs, nor did they receive appropriate training; ‘we need to be asked about our environments so that we get what works there …’ (man, 27, user); ‘mine was sent from outside and i was not taught how it worked’. (woman, 63, user). satisfaction of child users compared to adults, the child and caregiver quest 2.1 scores demonstrate similar dissatisfaction with wheelchair features but higher satisfaction with wheelchair services (figure 4). however, apart from training, more than 25% of users were not satisfied with services. the two wheelchair features most children and caregivers were satisfied with were the ease of using (53.8%) and moving (53.9%) the wheelchair, whilst 52% were satisfied with how much time it took to set up the wheelchair. narrative examples underscore this: i am happy that the wheelchair is not difficult to propel but it's too big for my child’ (woman, caregiver). figure 4: percentage of child users who were very or quite satisfied with their wheelchair and wheelchair services according to the children's quest 2.1 (n = 50). however, child users who independently propelled reported that they found their wheelchairs clumsy, heavy and difficult to use. the highest levels of dissatisfaction were reported for reliability (66.7%), meeting user needs (60.6%), appearance (53.9%) and size (53.8%). the wheelchairs were generally too big for the children. inappropriate wheelchairs and size affected posture support, comfort, function and safety. most of the children had only basic wheelchairs, with no posture support: ‘i am not happy at all with this wheelchair, it is too big and my child keeps slipping out and falls often’ (woman, 30, caregiver). the impact of the environment and wheelchair design on durability was recognised as qualitative data show and, similar to the adults, was associated with rigidity of the frame only: ‘… at times it's not about how strong the chair is … its damaged more from where we use it … the environment is just bad … (woman, 30, caregiver); ‘… although the non-foldable one has its problems in transportation … i prefer that it's strong …’ (woman, 37, caregiver). although not satisfied with how long it took to receive the wheelchair, child users and their caregivers were generally satisfied with service delivery and professionalism, with 68.8% satisfied with advice and 76.5% satisfied with training provided. their dissatisfaction with repair services was similar to that of adults (figures 3 and 4). they qualified their expectations in the qualitative data; ‘… the places for repairs and service should be brought closer to us and should be for free …’ (woman, 30, caregiver). adult users identified durability (55%), comfort (40%) and safety (40%) as priorities for the wheelchair; whereas children/caregivers identified dimensions (56%), ease of use (52%) and meeting their needs (42%) as the most important aspects. function the extent to which both child and adult participants agreed that the wheelchair facilitates function is presented in table 3. scores were collapsed into agree (completely, mostly, slightly agree) and disagree (completely, mostly and slightly disagree). the majority of users (82%) agreed that the wheelchair allowed them to reach and carry out activities at different surface heights. approximately two-thirds of users felt the wheelchair contributed to daily routines and matched their health needs, and just over 60% agreed that it allowed them to do transfers and personal care tasks. however, fewer than 50% of users indicated that the wheelchair matched their comfort needs, assisted indoor and outdoor mobility or allowed use of transport. frequent falls were reported for both children and adults. users prioritised mobility, safety and function: ‘… when i am safe i move faster and i am confident to do it …’ (man, 44, user and provider). table 3: : functioning every day with a wheelchair (few) scores (n = 94). ill-matched wheelchair features not only impact on durability, function and safety, but may also impact on the users’ basic human rights, dignity and inclusion, as illustrated by qualitative data: ‘what is important is for my sister to get a chair with tubeless tyres so that we can bring her here (clinic) without having to put her in a wheelbarrow’. (focus group participant, caregiver) some providers reported on the impact of the environment on function, safety and outdoor mobility in the focus groups without considering the impact of the wheelchair design and features, whilst others erroneously associated rigidity, rather than wheelchair design features such as rear wheel adjustability or wheelbase with improved performance and safety. ‘… generally the outdoor environment is not ready for users. you will see … that most can’t even use their wheelchair in their own yard’. (man, 34, provider) ‘… the environment is just not user friendly and to talk of full functional independence in this context … i just don’t know …’ (woman, 40, provider) ‘… although the rigid one is not preferred by many, we prescribe it often because safety and posture support are a priority for us …’ (referring to local rigid frame three-wheeler) (man, 33, provider) discussion top ↑ although more than 60% of wheelchair users agreed that the wheelchair contributed to specific functions such as reaching and doing tasks at different heights, carrying out daily routines and personal care tasks as well as doing transfers, less than 50% agreed that it allowed them appropriate indoor and outdoor mobility (few scores). this finding was echoed in the respective adult and child quest items rating on satisfaction with wheelchair performance, namely effectiveness (figure 3) and meeting user needs (fig 4), where only 31% of adults and 39.4% of children were satisfied. most everyday tasks, although performed in various settings, do not require much mobility in the wheelchair, and just being able to sit might assist in performing the tasks. shore and juillerat (2012) reported similar improvements in function with a basic non-folding wheelchair for users from vietnam, india and chile, whilst mukherjee and samanta (2005) reported similar mobility restrictions in a group of indian wheelchair users of basic non-folding wheelchairs. considering that a wheelchair is primarily a mobility aid, it should not only promote functional activities in sitting, but also promote inand outdoor mobility. in contrast with current study findings on satisfaction on wheelchair mobility, bergstrom and samuelsson (2006) found that 98% of swedish users with sci were satisfied with their indoor mobility and 80% with outdoor mobility. more than 60% of users in a regional study from south africa agreed that the wheelchair allowed satisfactory indoor and outdoor mobility (visagie, duffield & unger 2015). environmental barriers were not explored in any one of the studies. the swedish setting was presumably more urban and accessible and may have enhanced the performance of and satisfaction with the wheelchair and explain the higher satisfaction scores in the swedish study. in contrast, the south african study had higher satisfaction scores than the current study, despite having a similar setting. several features that directly impact on mobility were rated in the quest 2.0 and 2.1. figure 5 shows that, compared to adult users from other studies, users in this study were less satisfied with every wheelchair feature. although study populations and settings differ, user satisfaction can be compared across these studies, as irrespective of contextual differences, a comprehensive wheelchair service should result in an appropriate wheelchair for each user which meets their functional, posture support, environmental and durability needs. figure 5: comparison of quest 2.0 wheelchair feature item scores across four studies. one explanation for the poor satisfaction with the wheelchair and the challenges with indoor and outdoor mobility found in the current study may be the features of both basic folding and non-folding frame wheelchairs (figure 1). in these designs the user is positioned relatively high above and in front of the rear wheel axle, compromising efficient propulsion ergonomics, which together with a short wheelbase loads the front castors (medola et al. 2014). the subsequent increase in rolling resistance requires more energy to propel the wheelchair (medola et al. 2014; mukherjee & samanta 2005). the loaded castors also get stuck easily against obstacles and in holes or ruts and are difficult to lift when trying to clear these obstacles (medola et al. 2014). eventually users might lose the ability to push themselves (ø derud 2014). wheelchairs with longer wheelbases which reduce the weight on the front castors and ease propulsion on uneven or rough terrain may have increased user satisfaction. furthermore, neither wheelchair offers adjustability to optimise propulsion ergonomics. wheelchairs with adjustable settings, particularly adjustable rear axle positions (figure 6), contribute to higher levels of satisfaction and function (bergstrom & samuelsson 2006; karmarkar et al. 2009; medola et al. 2014; rispin & wee 2015; samuelsson & wressle 2008). figure 6: examples of design options with adjustable rear wheel axle settings. source: figure provided by elsje scheffler. the higher satisfaction levels for outdoor mobility reported by visagie et al. (2015) might be attributable to the features of the particular wheelchair designs used. in their study 43% of users used adjustable wheelchairs with features designed for outdoor environments (figure 7). rispin and wee (2015) demonstrated the superiority of wheelchairs with a long wheelbase and adjustable rear wheel axle settings (figure 7) in distance travelled, user satisfaction and physiological cost over basic folding frame wheelchairs when tested on rough, uneven tracks. both users and service providers in the current study ascribed outdoor mobility challenges to only environmental barriers and seemingly failed to recognise the impact that appropriate wheelchair design and features may have on function and mobility. similarly, they associated improved durability, safety and function of the local three-wheel wheelchairs with rigidity rather than the features such as a long wheelbase and lessened load on the front castors. these findings highlight the need for training of both groups on wheelchair design and how this relates to environment and user needs. figure 7: examples of wheelchair designs referred to in the studies by visagie et al. (2015) and rispin and wee (2015). source: figure provided by elsje scheffler; © motivation comfort is an essential wheelchair feature and was ranked as one of the three key features by adults in the current study and other studies (bergstrom & samuelsson 2006; samuelsson & wressle 2008). although comfort achieved the highest satisfaction rate (51.2%) in the current study, the percentage of satisfied users was still at least 10 percentage points below that of other studies (figure 5) (bergstrom & samuelsson 2006; de groot et al. 2011; samuelsson & wressle 2008). mukherjee and samanta (2005) found that comfort was ignored in the distribution of donated wheelchairs in india, resulting in higher dissatisfaction and contributed to wheelchairs being abandoned. only one previous study reported very high levels of satisfaction with comfort (90%) (samuelsson & wressle 2008). in their study 80% of users were satisfied with all wheelchair features reflecting the impact of highly adjustable wheelchairs. the high levels of discomfort reported in the current study may be explained by the wheelchair designs that lack adjustability and an inadequate size range (ø derud 2014), resulting in poor fit and posture support. adult users in the current study ranked durability as the most important feature of the wheelchair. almost 80% of adults (figure 3) and 70% of children (figure 4) experienced durability and reliability problems, which may again be attributable to the use of wheelchairs with basic folding frame (pearlman et al. 2008) and basic non-folding frame designs (mukherjee & samanta 2005). this design is not appropriate for active use on uneven terrain such as broken pavement, sand, dirt and mud commonly found in less resourced settings, resulting in undue stress and higher needs for repairs and replacement (mukherjee & samanta 2005; ø derud 2014; pearlman et al. 2008). disrepair and safety considerations are common reasons for abandoning wheelchairs (mukherjee & samanta 2005; toro et al. 2012). durable wheelchairs have been associated with user satisfaction (bergstrom & samuelsson 2006; visagie et al. 2015). similar to users in a south african study (visagie et al. 2015), users in the current study were mainly dependent on minibus taxis for transport and experienced challenges related to attitudes, embarking and disembarking, as well as space. taxi operators often either do not stop for wheelchair users or charge them extra (cawood 2012; chakwiriza et al. 2010), emphasising the need to consider specific wheelchair features for transport, together with an intersectoral approach to finding solutions for transport challenges. the poor satisfaction rates and user comments on service delivery may reflect inadequate training of service providers. both the un convention (un 2006) and the who wheelchair guidelines (who 2008) promote comprehensive service delivery by trained service providers. wheelchair services delivered by well-trained providers have been associated with increased satisfaction amongst wheelchair users (bergstrom & samuelsson 2006; glumac et al. 2009; routhier et al. 2003; samuelsson & wressle 2008). users in the current study expressed more dissatisfaction with services compared to other studies (figure 8). varying and sometimes conflicting user needs (bergstrom & samuelsson 2006; visagie et al. 2015) contribute to the complexity of wheelchair assessment, prescription, fitting and training; thus service personnel require adequate knowledge on wheelchair design, as well as the physical, environmental and psychological needs of the user (bergstrom & samuelsson 2006; glumac et al. 2009; routhier et al. 2003; samuelsson & wressle 2008; un 2006; who 2008). although occupational and/or physiotherapists commonly provide wheelchair services in resourced settings (greer, brasure & wilt 2012; samuelsson & wressle 2008), rehabilitation technicians were the primary service providers in this study. the who wheelchair guidelines (who 2008) emphasise suitable training of wheelchair service providers rather than occupation and promote training of other categories of service providers such as community health care workers, community based rehabilitation workers, prosthetists, technicians and craftsmen. figure 8: comparison of quest 2.0 wheelchair services item scores across four studies. users were not consulted on their needs, received limited training, and little information. inadequate service provision in this study negatively impacted on assessment, fit, user training, function and user rights. visagie et al. (2013) demonstrated the negative impact that fragmented services may have on user outcomes. similarly, mukherjee and samanta (2005) and ø derud (2014) describes how in the absence of comprehensive service delivery, little if any user assessment is done and wheelchairs are provided without consideration of fit, posture support, functional and environmental needs. the subsequent poor match between the wheelchair features and user needs contribute to discomfort, poor mobility, loss of function and stability, poor durability, as well as safety challenges found in the current study and by mukherjee and samanta (2005) and toro et al (2012). adult users in this study ranked safety as one of the top three priorities for their wheelchair. poor fit and posture support may compromise health needs and can cause secondary complications such as pelvic and trunk deformities and pressure ulcers, a common cause of mortality amongst wheelchair users (ø derud 2014; toro et al. 2012). the high mechanical wheelchair failure reported (see durability and reliability items in figures 3 and 4) necessitates adequate repair services, yet satisfaction with repair services was considerably lower compared to resourced settings (bergstrom & samuelsson 2006; de groot et al. 2011; samuelsson & wressle 2008) (figure 8). this may be due to a lack of technical knowledge and spare parts, which are common in less resourced settings (mukherjee & samanta 2005; ø derud 2014; toro et al. 2012). most accidents in wheelchairs are due to technical malfunction and can be prevented by regular maintenance (hansen, tresse & gunnarsson 2004). follow-up services were limited in this study. the 33% satisfaction with follow-up services is again much lower than the rates reported by de groot et al. (2011), samuelsson and wressle (2008) and bergstrom and samuelsson (2006). changing user needs, growth or changes in the health conditions make follow-up essential to ensure that problems with fit, posture support, function, durability and safety are identified and addressed (hansen et al. 2004; samuelsson & wressle 2008; toro et al. 2012; who 2008). findings of this study illustrate that donated wheelchairs provided without the necessary comprehensive support services can lead to poor user outcomes. whilst outside the scope of this study, it is also important to mention that donations provided through a charity model can disempower users rather than promote their rights. considering the cost of and the need for wheelchairs, many low-resourced settings like zimbabwe will require donor assistance in its wheelchair service delivery. donated wheelchairs, if appropriately managed by trained staff and through comprehensive services, can result in satisfactory user outcomes (glumac et al. 2009). limitations the results of this study must be interpreted with caution due to limitations in the methodology and possible bias. bias may have been introduced by sampling users who accessed the services, as the extent of the problems they experienced may have been greater than those not accessing the services, culminating into lower levels of satisfaction and function. drawing a sample from participants who accessed services may have excluded those who could not access services due to contextual barriers. the standardised tools were not tested for validity and reliability in the study setting or a similar context. context and culture can influence users’ opinions about what aspects of a device, services or function are important and how people interpret questions and answer options. thus aspects important to the current study population might have been left unexplored through the tools used. as some of the data collectors were wheelchair service providers as well, users might have wanted to please data collectors with their answers in order to ensure goodwill for future services or to secure a new wheelchair. both data collectors and the standard participant information sheet (translated into the two vernacular languages) emphasised that neither refusal nor honest opinions would negatively influence service provision. in all few items some users selected the ’does not apply’ option (table 3). according to data collectors, users chose this option mainly when they were completely dependent in performing the activity or were not full-time wheelchair users. even so, it is difficult to see how aspects such as comfort and health needs do not apply. recommendations top ↑ in light of the challenges identified in zimbabwe and the discussed positive impact of comprehensive services, trained staff and appropriate wheelchairs on user function and satisfaction, it is recommended that policy and minimum service standards based on evidence and good practice are developed to guide training of wheelchair service providers, wheelchair provision and wheelchair service delivery in zimbabwe. wheelchair services in zimbabwe are heavily dependent on donations. to optimise the outcomes of the impact of these donations it is recommended that these guidelines include management strategies to source and distribute appropriate wheelchair donations through existing service networks. monitoring and evaluation should form an integral part of the service standards and programme management at service, provincial and national level. the findings also showed a need for access to a wider range of wheelchair design options in order to meet different user functional, posture support and environmental needs. further studies on the impact of the who guidelines (who 2008) on wheelchair service delivery, user satisfaction and function are recommended, as is studies on the impact on environmental factors on access to wheelchair services in less resourced settings. a systematic review of studies reporting adult satisfaction with wheelchairs using the quest 2.0 is also recommended. conclusion top ↑ the study contributes to the body of knowledge on wheelchair user satisfaction and function in less resourced settings. compared to users from resourced countries, zimbabwean users were on the whole much less satisfied with their wheelchairs and in particular with their overall mobility, wheelchair durability and comfort as well as wheelchair services. users were excluded as active participants in the process and, subsequently, were not adequately informed and empowered about wheelchairs and their rights. the study found that, despite high levels of dissatisfaction, inappropriate wheelchairs contributed to some autonomy, freedom and independence in everyday tasks, but simultaneously emphasised the extent to which users` mobility impairment was perpetuated, particularly by failing to meet their environmental, mobility and durability needs. these factors will ultimately limit the users’ inclusion, participation, freedom and independence, whilst simultaneously increasing the risk for injury due to mechanical malfunction. faced with something versus nothing, or an inappropriate rather than an appropriate wheelchair, users will always be grudgingly grateful: ‘you cannot expect much from a donation, but for you to be thankful’ (man, 41, user). but from a rights-based and mobility perspective, wheelchairs, wheelchair services and wheelchair donations should meet the objectives of article 20 on personal mobility (un 2006), and place the same value on wheelchairs that users do: ‘the value you put on your legs i place on my wheelchair’ (woman, 26, user). acknowledgements top ↑ the authors thank jon pearlman, director: international society of wheelchair professionals and assistant professor: department of rehab sciences & technology, university of pittsburgh, as well as dr johan borg, division of social medicine and global health, lund university, for peer reviewing and providing highly insightful comments on the manuscript. the comprehensive mobility support programme and the research reported on in this paper were made possible by the generous support of the american people through the united states agency for international development (usaid). the contents are the responsibility of the authors and do not necessarily reflect the views of usaid or the united states government. (project number spans 025 cbm/zimbabwe). competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions s.v. (stellenbosch university) conceptualised and drafted the article, created tables and graphs, and co-ordinated feedback from co-authors. e.s. (university of zimbabwe) gave conceptual input into the research methodology, acted as master trainer for the cmsp, and provided conceptual comments and feedback on the article. t.m. (university of zimbabwe) was the principal investigator for the research project. she conceptualised and designed the study, collected and analysed data and wrote the research report. c.m. was a researcher in the project and managed and analysed qualitative data. j.v.v. (cbm, africa) developed the cmsp proposal and was responsible for implementation and management of the cmsp. d.t. 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visagie, s., duffield, s. & unger, m., 2015, ‘exploring the impact of wheelchair design on user function in a rural south african setting’, african journal of disability 4(1), art. #171, 8 pages. http://dx.doi.org/10.4102/ajod.v4i1.171 visagie, s., scheffler, e. & schneider, m., 2013, ‘policy implementation in wheelchair service delivery in a rural south african setting’, african journal of disability 2(1), art. #63, 9 pages. http://dx.doi.org/10.4102/ajod.v2i1.63 united nations (un), 2006, convention on the rights of persons with disabilities, viewed 17 january 2011, from http://www.un.org/disabilities/convention/conventionfull.shtml world health organization (who), 2006, report of a consensus conference on wheelchairs for developing countries, viewed from http://www.who.int/disabilities/technology/wheelchair%20consensus%20conference%20report_jan08.pdf world health organization (who), 2008, guidelines on the provision of manual wheelchairs in less resourced settings, world health organization, geneva. zimstat, 2013, zimbabwe population census 2012 national report, viewed from http://www.zimstat.co.zw footnotes top ↑ 1. users who can maintain neutral, upright sitting posture without support and need wheelchairs without modification (who 2008). 2. users with mild to moderate postural deviations who need wheelchairs with modifications and supportive seating (who 2008). abstract introduction findings concluding remarks acknowledgements references footnotes about the author(s) desire chiwandire department of political and international studies, rhodes university, south africa louise vincent department of political and international studies, rhodes university, south africa citation chiwandire, d. & vincent, l., 2017, ‘wheelchair users, access and exclusion in south african higher education’, african journal of disability 6(0), a353. https://doi.org/10.4102/ajod.v6i0.353 original research wheelchair users, access and exclusion in south african higher education desire chiwandire, louise vincent received: 24 nov. 2016; accepted: 02 may 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: south africa’s constitution guarantees everyone, including persons with disabilities, the right to education. a variety of laws are in place obliging higher education institutions to provide appropriate physical access to education sites for all. in practice, however, many buildings remain inaccessible to people with physical disabilities. objectives: to describe what measures south african universities are taking to make their built environments more accessible to students with diverse types of disabilities, and to assess the adequacy of such measures. method: we conducted semi-structured in-depth face-to-face interviews with disability unit staff members (dusms) based at 10 different public universities in south africa. results: challenges with promoting higher education accessibility for wheelchair users include the preservation and heritage justification for failing to modify older buildings, ad hoc approaches to creating accessible environments and failure to address access to toilets, libraries and transport facilities for wheelchair users. conclusion: south african universities are still not places where all students are equally able to integrate socially. dusms know what ought to be done to make campuses more accessible and welcoming to students with disabilities and should be empowered to play a leading role in sensitising non-disabled members of universities, to create greater awareness of, and appreciation for, the multiple ways in which wheelchair user students continue to be excluded from full participation in university life. south african universities need to adopt a systemic approach to inclusion, which fosters an understanding of inclusion as a fundamental right rather than as a luxury. introduction accessibility must be at the front and centre of student politics. when we say we need to make our universities more accessible to students we’re including race, social status, disability and a host of things that comprise our identity. last year we saw the rhodes must fall, fees must fall and patriarchy must fall movements, challenging things like racism, classism and sexism. but i don’t think we’ve seen a radical or a strong conversation about ableism or about disability. … that means we have not addressed the issue in totality. (university of cape town student activist busi mkhumbuzi, cited in hendricks 2016) poorly designed physical environments exclude persons with disabilities (pwds) from participating in mainstream society (dsd, dwcpd & unicef 2012:20). wolanin and steele (2004), for example, point to ‘curbs and stairs that cannot be navigated by wheelchairs or mounted by the physically frail; [the unavailability of] tactile maps for the blind, and no tty1 phones for the deaf’ (p. 53). lack of elevators, ramps, automatic doors, braille signage and telecommunication devices are among the more obvious factors that deter and restrict the equal participation in various spheres of public life of pwds (gal et al. 2010:91). as howell and lazarus (2003:68) have argued, it is a central requirement of respect for diversity that ‘physical barriers that limit mobility and thus access to institutional services for some disabled students, especially physically disabled and blind students’ be eliminated. in apartheid south africa, the education of students with disabilities (swds) was low on the priority list of the national party government. little attention was paid to developing the built environments of educational institutions in such a way as to include swds – particularly students with physical disabilities (swpds). post-1994 saw the advent of democracy and the enactment of a new constitution (section 29[1][a]) that guaranteed everyone, including pwds, the right to education, and inclusive education policies such as the education white paper 6, special needs education: building an inclusive education and training system impose an obligation upon all higher education institutions (heis) to ensure that there is appropriate physical access for all learners. south africa’s 2008 national building regulations and building standards act provides for minimum standards of accessibility to be applied in the design of new buildings. south africa is also a signatory to the united nations convention on the rights of persons with disabilities (uncrpd) 2006 (see dsd et al. 2012:19), which entails ‘an obligation to take proactive measures to ensure that the rights of persons with disabilities are promoted and protected’ both in higher education (he) and work environments (south african human rights commission 2012:1). among other things, this should take the form of ‘ensur[ing] an inclusive education system at all levels’ including heis, which should be in line with the provisions of article 24 of the uncrpd.2 article 24 also obliges states to provide reasonable accommodations and appropriate support services tailored to individuals’ educational needs as a measure of ensuring that pwds can participate effectively in a free society. in 2007, the south african government ratified the uncrpd. article 9 of the uncrpd obliges heis to be physically accessible to pwds by applying the accessibility principles of ‘universal design’ and ‘inclusive design’. accessibility refers to ‘the degree to which an environment, service, or product allows access by as many people as possible, in particular people with disabilities’ (world health organization [who]; world bank 2011:303). ‘accessibility’ entails making it possible for ‘persons with disabilities to live independently and participate fully in all aspects of life’. signatories to the convention are thus obliged to take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open to or provided to the public. obstacles and barriers to accessibility – for example, in relation to buildings, roads, transportation, housing and outdoor facilities – must be identified and eliminated. in many countries, many social spaces are inaccessible to wheelchair users; however, the passage of article 9 on accessibility of the 2006 uncrpd has imposed obligations on signatory countries with respect to accessibility for wheelchair users including the accessibility of social spaces such as cafeterias and restaurants. the post-apartheid government encouraged universities to conduct access audits ‘wherein the existing facilities are assessed and suggestions provided for further improvement’ (agarwal 2012:56). in its green paper of 2012, the department of higher education and training (dhet) made a commitment to determine the financial needs of various disability units and to allocate resources based on the needs of each unit (dhet 2013, cited in lourens 2015:116). the following year, in the white paper of 2013 it became clear that this commitment was not empty with the provision of funding for infrastructure audits at each of the country’s 23 public universities and an allocated r130 million for improving accessibility on campuses (dhet 2013, cited in lourens 2015:116). in practice, however, south africa’s progressive legislation has had minimal impact on improving campus access for swds with many buildings remaining inaccessible and in principle commitments to accessibility and inclusivity remain unrealised. howell and lazarus (2003), for instance, have pointed out that whilst new buildings and facilities must now meet the requirements of the national building regulations of 1986, these regulations are not sufficiently enforced and many new buildings built on campuses since 1986 remain inaccessible, particularly to wheelchair users. (p. 69; see also fotim 2011:11) there have been numerous instances of admission to public universities in south africa being denied to swds on the grounds that they do not have appropriate facilities to accommodate these students. for example, in november 2013 nelson mandela metropolitan university denied admission to three visually impaired students. in january 2015, a wheelchair user’s application was turned down by tshwane university of technology on the grounds that the university was not physically accessible to wheelchair users. in losinsky et al.’s (2003) study that investigated the physical accessibility to wheelchair users of one south african university, participants expressed concerns over the inaccessibility of some campus buildings, including facilities such as toilets (see also matshedisho 2010:732). most south african universities have disability units that are charged with the responsibility of protecting and promoting the interests and rights of swds. for the purpose of this study, we interviewed 28 disability unit staff members (dusms) at 10 different south african universities to gain an insight into why so little progress has been made with regard to reconfiguring south african university campus environments in order to ensure equal and full access for swds. the participants described a range of challenges that they face with calling universities to account for failing to promote full access and participation in he for swds. initial coding of these interviews revealed commonalities in the way in which dusms based at 7 of the 10 universities in the larger study spoke at length about challenges faced by wheelchair user students (wuss) in particular on their campuses because of the physical inaccessibility of the built environment and a lack of wheelchair-adjusted transport. the data were therefore disaggregated and for the purpose of the present paper, the interviews with the 13 dusms who focused on issues such as ramps, railings, stairs, staircases, curbs, sidewalks, narrow passages, pathways and parking spaces – all of which are particularly relevant to wheelchair users – formed the focus. ethical consideration ethical clearance was obtained from all sampled institutions. findings south african universities have a long way to go with regard to putting into practice the on-paper commitments that the country has made to creating educational environments that are accessible and universally inclusive. the principle of universal design (ud) enjoins building planners, engineers, architects and the like to design ‘buildings that are suitable for all users’ (imrie & hall 2001:335) rather than taking the approach of adding to or adapting physical spaces designed for non-disabled people (chard & couch 1998:605). environments must, as david mitchell (2010) has argued, ‘be usable by the greatest possible range of people, to the greatest extent possible, without the need for subsequent adaptation or specialised design’ (p. 13). the principle of ‘inclusive design’ (chard & couch 1998:607) moreover points to the need to make physical environments accessible not only to students of one type of disability but rather to those with diverse disabilities. inclusive design has to do with designing environments in such a way that diverse people will benefit and have their quality of life enhanced by living and working in such environments (see chard & couch 1998:607). the dusms interviewed for this study identified a number of stumbling blocks preventing full and equal access to buildings, facilities and other campus spaces for wheelchair users in particular. these include appeals to the preservation and heritage as a justification for failing to modify older buildings, ad hoc and quick fix approaches to creating accessible environments with a lack of consultation with pwds, the failure to address and prioritise issues such as access to toilets, libraries and transport facilities for wheelchair users, the failure on the part of universities to proactively create welcoming environments where all students feel they belong and are able to integrate socially and the relative powerlessness of dus to call those in authority to account for failing to take steps to make progress towards overcoming these challenges. the preservation of historical heritage as a justification for exclusion ‘one of the critical challenges will be our facilities, this university actually was built 49 years ago so at that stage in terms of the building regulations there was never actually any urgency to make our facilities you know to be accessible. so, as a result, of that then, to comply, you need huge injection of resources so that you make your facilities accommodating you know your lifts, your access to offices, access to ablution facilities, your steps, your ramps, your parking bays, you know your stairs. so, there needs to be a huge amount of resources that needs to go into this now. it’s better here because some of our inaccessible building are not heritage sites. it becomes very difficult if you have that kind of buildings because then there is the heritage act that you need to preserve the building on the other hand and you know there are also those kinds of challenges.’ (participant 1, male, 52 years) the south african heritage resources agency and national heritage council3 govern the conservation, protection and promotion of heritage resources (parliamentary monitoring group 2015). older buildings on some university campuses are considered as falling within the ambit of cultural heritage requiring protection and preservation. dusms pointed out that the idea of preservation was frequently used as an excuse to justify the failure on the part of universities to commit funds to making older buildings accessible to wheelchair users. ‘i would say protecting the historical heritage is partly one of the reasons why our buildings are inaccessible. i submitted a report saying this building and this building, there needs to be a lift or a ramp, so the first thing they would say is like it’s a ‘historical building’, but they don’t know that historical buildings can also be adjusted in some way, so that’s part of the problem.’ (participant 2, female, 36 years) ‘old buildings should be renovated in such a way to make them more accessible. … this campus is over 100 years old so we have old buildings … and 70s and they are not accessible at all and the problem being, so you see this building [showing me the picture] it was built in the 1930s so it’s a national heritage building so we cannot do anything at the front of the building, … now we must do something, make plans to do something at the back. so we are working with the new building regulations which guides you in how an accessible bathroom must look like. they have specifications on heights, lengths and breadths and everything. so we are looking at that. slowly, but surely, it’s difficult because we [are] wanting things done as quickly as possible, but your guys on the other side of physical and infrastructural planning – there are other things that they are focusing on then disability gets forgotten.’ (participant 3, male, 36 years) ‘if people keep on using excuses of historical buildings, and denying them access because of history, it will get to a point where disabled students demand the breakdown of historical building because you are not giving them access because that’s where we gonna go to at the end if they keep on using that excuse. so, negotiate and find a solution together with them otherwise you gonna get a rhodes must fall type of situation where the disabled students will say we are fed up now you saying it’s because of this historical building, what is more important, the fact that historical building or the fact that as a wheelchair user i can’t get to my class.’ (participant 4, female, 46 years) the cost of universal access as a justification for exclusion as participant 5’s comments make clear, the heritage argument is often tied closely to arguments about competing resources and resource constraints and without clear commitments to universal access on the part of university management dusms often find it difficult to ensure that disability policies are implemented in practice. ‘making universities accessible can be done, but there has got to be a political will, there has got to be the will to spend money. because you know at the university there is always competing claims there is never enough money for anything, everybody always think that they deserve that money whether it’s for their nuclear programme, or their medical transplant programme, or their african language programme so disability access … has to fight with all those other kind of competing claims on the university’s resources and of course nobody, it’s very difficult to persuade people that disability is that [loud voice] disability access is that important … and that is a real problem. because if you are not disabled you don’t really get, until you have sat at the bottom of stairs in a wheelchair and thought how am i am i gonna get up these stairs … that’s only when it becomes something that people only get, but if you can run up the steps it’s easy to look around you and say where are these disabled people you are talking about, i don’t see anybody around. you know we often found that, they aren’t in a wheelchair where are they? should we spend million making this place accessible for two people, you know and people say there are much more important things that we need to be doing. for instance, a movie theatre, it’s gonna cost me 10 million rands to make this movie theatre accessible, but how many wheelchair users will have to buy tickets before i get my money back. those are the kinds of arguments that ordinary people use. and you know disabled people aren’t that very visible sometimes.’ (participant 5, female, 63 years) ‘e.g. the former director of finances did not want to put the lift in our building which was inaccessible for staff and students with disabilities … because he is one of those guys who squeezes a rand until it starts to cry. … the other problem is budgeting. say for instance, i submit a report for a building to be adjusted and maybe it’s not a building to be prioritized by our or according to our management, they prioritize building whose reports or audits were submitted five years back [they will priorities this building after 5 years] so now i come with a different building for them to see where to fit it, so it’s a whole prioritising thing.’ (participant 2, female, 36 years) ‘there is no money lying around for things like that, if we see an urgent need then it’s a joint effort and we then try to get the money together, but there is not. for example, there is not each year, let’s say 5 million budget budgeted for the upgrade of infrastructure for disability access, that is not there so we do it as we see the need arise.’ (participant 3, male, 36 years) costs are often seen as a reason to justify university management’s reluctance to make the built environment accessible for wuss. research disputes this contention (policy paper 2011:10). ‘despite perceptions to the contrary, accessible design is inexpensive, with one study stating that making buildings accessible represents less than 1% of total construction costs’ (unesco 2009, cited in policy paper 2011:10). participants in the present study pointed out that what makes accessible design become more costly is the fact that improper ramps and other amendments are built rather than doing things correctly in the first place in consultation with pwds. howell and lazarus have criticised the association of rehabilitation or alterations and adaptations to the built environment of south african campuses with high costs as not grounded on valid evidence (howell & lazarus 2003:69). howell and lazarus (2003) argue that whilst there are obviously some cost implications for developing accessible facilities, both local and international experiences indicate that the creation of barrier-free environments are more about appropriate and informed planning and design than they are about costly additions and adaptations. (p. 69) therefore, in order to achieve this ‘it’s a matter of building in the right way from the start, so that everyone gets to contribute their different perspectives’ (national property board of sweden [sfv] 2014:4). expertise in ud is required as ‘without sensible decisions and intelligent procurement, nothing will change, which means the results are not up to scratch and mistakes are costly to fix afterwards’ (national property board of sweden [sfv] 2014:4). as katsui has argued, rather than a focus on the cost of accessibility and the ‘costly problems of individuals’, a reorientation is required to view accessibility as ‘an added value for the university rather than costly problems of individuals’ (katsui 2009). core facilities and services: libraries, toilets and transport proponents of inclusive education have highlighted the importance of prioritising the accessibility of facilities such as lecture theatres, libraries, toilets and modes of transport (thomas 2012:58–59). libraries are often prioritised when it comes to inclusive educational practice for wheelchair users. apart from providing curb cuts, ramps and lifts which are central for wuss to access buildings, it is also important that library interiors are accessible and easy to navigate, so that once inside a library, for instance, ‘aisles between the bookshelves’ are wide enough for a wheelchair user to browse books (hall and tinklin 1998:47). in the 2014 the south african libraries 20 years review, the south african minister of arts and culture, emmanuel nkosinathi mthethwa stressed that: libraries are places that must be open for everyone, catering for people with disabilities, rural citizens, the jobless and the incarcerated. our society will only move forward when all our people experience an ever-increasing access to information in different kinds of formats. it is a challenge to keep up with the demand. (department of arts and culture 2014:4) the dusms interviewed for the present study pointed out that although funds might not be available to make every corner of a campus accessible immediately, universities were failing even to prioritise facilities that are of fundamental importance to being a student such as libraries. participant 6 pointed out that often libraries are among the oldest of a campus’s buildings, which then means that the heritage argument comes into play even though this might mean that a wheelchair user’s access to the library is limited. ‘now we are sitting with that problem for instance, our library, we cannot make changes in our library because it’s a heritage site, it was designed and won a world prize for its architecture, we are sitting with that thorny issue, we have to get permission and it does not have a lift even though we would like to make it more accessible, but it must not damage or impinge the fact that it won this prize for design which makes me very annoyed because, it won a prize for design yes, but that design did not accommodate persons with disabilities. there is a ramp, but nobody can use it, it’s too steep. there is a lift, but the lift only goes to the third floor. that’s one of the things we are sitting on, how we can provide more access to the library.’ (participant 6, female, 63 years) equally fundamental to any human being’s ability to function in a public institution without having their dignity compromised is the need for accessible toilet facilities. under south africa’s national building regulations, provisions 4.12.1 to 4.12.4 provide for toilet facilities in public buildings and educational and workplace environments that are accessible to wheelchair users. despite these provisions, most educational institutions in south africa still do not provide toilets that are accessible to wheelchair users (department of education 2007; losinsky et al. 2003). our participants criticised the poor design and construction of toilet facilities on campuses that make it hard for wuss to have access to dignified use of toilet facilities. ‘and the most important thing is that if … a person can’t get to the toilet, then nothing is accessible in a hotel or in a dormitory or anywhere else and that is universal accessibility. to change or to build a wheelchair accessible toilet is a battle, like a battle from hell. even if you go to your university you will see if there is a ramp most students will walk on the ramp. you go to a hotel there are only 4 rooms that are wheelchair accessible. it is so stupid to have that because if i have a team of 8 wheelchair tennis players or 12 now i have to put them in different hotels because only 4 can stay in one hotel. nobody understands, oh no i can’t say nobody understands, but very few understand universal accessibility. you don’t have to build a toilet for a person with a disability, a wheelchair accessible toilet with a room that’s 3 by 3 metres. you can take that 3 by 3 metres and every toilet you build instead of making it 90 cm and 1 and half meter so that any wheelchair person and any person who can walk can use that toilet for disabled people. why do you have one toilet for disabled people? why can’t you have 10 toilets for everybody and anybody to use?’ (participant 7, female, 52 years) as noted by agarwal ‘access is the key to inclusion’ (2012:56). without access to appropriate facilities, wuss face being inconvenienced by having to wait for a long time to use the one accessible toilet that might be on offer, which would not be the case if universities adopted the principle of ud that toilets are accessible to both wheelchair users and non-wheelchair users as a matter of principle. ‘old buildings should be renovated in such a way to make them more accessible like ramps, enough parking, rest rooms facilities and really accessible rest rooms facilities, not stupid stuff because sometimes [laughs] i’ve seen in some places that they take a normal bathroom and they stick a disability thing on it and put a railing or something and it’s not accessible at all.’ (participant 3, male, 36 years) transport is another core service that participants in the present study emphasised as central to fostering greater access for swds and for wheelchair users in particular. the accessibility to adapted transport for wheelchair users is provided for in article 9 of the uncrpd. south africa’s national student financial aid scheme (nsfas) caters for swds by providing non-means tested financial support to swds to study at one of the country’s 23 public heis (nsfas 2012:3). included are transport costs to and from campus (nsfas 2013 cited in ndlovu & walton 2016:4). however, dusms pointed out that in many cases flexible and suitable transportation simply does not exist, which makes it difficult for wuss to socialise with other students or to access campus at all after hours. ‘our students are not on campus … a lot of our students are in private accommodation and that makes it very difficult for them to be part of the university’s social clubs because you know transport for them is quite a challenge. therefore, if you want to have an event with all students from various campuses, you can’t. the transport is coming to pick them up at the specific time of the day and therefore they are not here in the evenings. if they can’t socialise, they can only socialise between breaks of classes, that is a problem. and we don’t have a shuttle service you know, we don’t have that. the other thing is that i agree, you know, we have a challenge to start a social group you know and get them involved. oh no because of the transport because of the different locations.’ (participant 8, female, 64 years) as participant 6 pointed out, wuss cannot simply ‘hop onto’ public transport as they require transport that is suitable. lack of appropriate transport can leave these students socially isolated and unable to access basic services that others take for granted such as shops and entertainment. ‘look the challenge is not only for swds, but it’s the same for our swds as it is for our non-disabled students at the residences. they are far from any, ok it’s even worse for our swds because they can’t hop a public transport, taxis because we are far and isolated from shopping areas centers and cbd, so we are isolated. … so, for them to get to those areas, accessible transport is a problem. it just makes it difficult for our swds to get out there and go to a movie, or to go shopping. the other students can hop a taxi to go out. swds might find it difficult because we don’t have accessible transport for wheelchair users and that’s also something we are looking at.’ (participant 6, female, 63 years) access to transport moreover is not simply a matter of being able to socialise but has wider implications for swds’ sense of autonomy and choice, which came through in participant 8’s comments: ‘i think it happens most at residence life, so it’s very important that we communicate to the residences where students are involved to include them in activities because they do a lot of cultural and social events and those kind of things, but i do know that sometimes for our students it might feel like more effort. for example, if you take a blind student who goes to a residence function or maybe a formal or something that happens at a different venue. a blind student needs transport to get there. ok, while it does not mean that a blind student has a friend who gives them a ride or and maybe, they do. they get to the function and maybe they are not enjoying themselves and they want to leave but they are dependent on somebody else to take them, so it might be beneficial to have a transport arrangement on campus for students who are blind. for example, after you have been to a function there is a driver to take them when they want to go home. so, they don’t really have a choice, they are forced to be stuck there until somebody takes them home.’ (participant 8, female, 39 years) in contrast, participants from campuses where flexible and appropriate transportation does exist commented on how significant this is as a feature of being able to foster inclusion in practice of swds. ‘even ensuring that there is accessible transport for swds because we have four sites, swds may wish to visit other students on other sites just, just like any other student would do. so, we have transport system a little shuttle service that is able to provide them access with that. it’s for any academic related activities so if they have interviews or internship placements. our students even if they want to go shopping to our nearest shopping centre or they have to go hospital for physiotherapy or chemo.’ (participant 9, female, 37 years) ‘whatever we plan on campus it’s open to them, we have the bus that transports swds, not very far, but around different campuses.’ (participant 10, female, 49 years) in addition to the provision of services like these themselves, which have the potential to significantly assist swds, as participant 11 made clear, universities need to work to raise awareness, conscientise and sensitise the non-disabled campus community to questions of diversity and inclusion. ‘on a daily basis, the parking outside that is marked for disabled people, we usually clearly go and ask them personally to remove his car, i actually at one stage went and put the notice on the windscreen to tell him that he is not allowed to park there. that’s the obstacle, the barrier that we have to deal with everyday, parking space. people park there because they don’t realise, there is not enough awareness, i mean, it’s like the moment that you have experienced the thing [being disabled], you understand better.’ (participant 11, female, 43 years) ad hoc and ‘quick fix’ approaches and a lack of systematic consultation with persons with disabilities when designing built environments one of the criticisms that dusms have of south african universities’ approaches to making campus environments accessible to pwds is that the approach is often what they termed ‘ad hoc’ – responding on a case-by-case basis rather than taking a systematic and principled approach to inclusion. moreover, existing approaches often fail to take into account the full range of disabilities with, for example, university personnel equating disability with ‘someone in a wheelchair’ at the cost of ‘awareness of the needs of people with other impairments’ (chard & couch 1998:608–621). when approaches to inclusion are ad hoc, they can prioritise what singal (2005:6) refers to as that which is ‘easy to accommodate’ – focusing on physical access, distribution of aids and appliances, or infrastructure such as ramps, rather than more difficult to achieve change in processes like pedagogy, curriculum or attitudes. likewise, thomas (2005) argues that ‘money is thrown at very visible and easy areas. shiny new ramps and rails are a suitable quick fix’ (p. 45). and as some of our participants pointed out, these interventions are often made with little proper consultation with pwds themselves and the result is poorly designed facilities that do not really improve quality of access. ‘our new residences that should take into account the new building regulations, and if there is a problem like we had at one new residence built two years back, they installed the ramp to get into the first floor where there is a lift and everything, but the ramp gradient was incorrect, it was too narrow, it was basically [laugh] a service ramp, it was good for [laugh, laugh] getting fridges ups and downs. we put in a complaint and they had to build a new one, we were like now you see what happened, in future see to it that if you do something do it right the first time otherwise you waste money.’ (participant 3, male, 36 years) rather than ad hoc or quick fix approaches that address only the most visible aspects of inaccessibility, participants stressed the need for systematic consultation with users in order to ensure that processes of designing, building or rehabilitating old buildings serve pwds appropriately. ‘there should have been a clause that accommodated the fact that the building should have been built from the first brick that was laid accessible for swds, for pwds but it is not there still because there are areas that are not accessible. so, there is still things that needs to be done from top management so that when we contract a guy to come and do the building there must be one of the things must already say, you must get a consultant that will consult you and give them advice on how to make this building accessible. i have been there, my colleague mitchell [who is one of the dusms who uses a wheelchair] … went there one day and she couldn’t even go in. that is not acceptable for me and i mean the builders could not have built an inaccessible place if there was a stipulation in the contract which came from policies which says all buildings must be accessible.’ (participant 11, female, 43 years) failure to create a sense of belonging for students with disabilities in recent years, several scholars (see, for example, allman 2013:3; fredericks 2010) have highlighted the concept of belonging as an important need for students in universities if they are to be fully included. following manja klemencic’s (2016) definition, belonging refers to a student’s perceptions of intimate association with the university: to feel a central and important part of the university and a sense of ownership of their university, each of which fulfils their human need for inclusion, acceptance and efficacy. as argued by klemencic, students’ sense of belonging to their universities is central to their ‘academic success and, more generally, for a student’s subjective sense of well-being, intellectual achievement, motivation and even health’ (klemencic 2016). south african scholars engelbrecht and green (2011) define ‘inclusive education as educational policies and practices that uphold the right of learners with disabilities to belong and to learn in mainstream education’ (p. 4). moriña and colleagues have argued that learning environments should be as inclusive as possible not only for the purposes of fostering a sense of belonging for all learners, including swds, but also for fostering full participation in the learning process and offering equal opportunities and quality learning for all these students (moriña, cortés & melero 2013, cited in van jaarsveldt & ndeya-ndereya 2015:2). our participants pointed to the need to achieve a sense of belonging for wuss as one of the inclusion challenges that universities are not being vigorous enough in confronting. ‘for me, commitment is very important because you need leadership on this one because without leadership it becomes a challenge and so you need what i call home away from home… everything needs to be accessible to swds every time, whenever, even if you are going to town, it must be easier going everywhere, you must or he or she must feel being able to do everything with the support from the university. the toilet, the study room, the library, everywhere. he must not feel like i’m disabled, he must feel like part of the university community.’ (participant 1, male, 52 years) as participant 12 pointed out, often accessibility and questions of belonging are closely related. where a person does not have ready access to social and educational settings, a sense of isolation and shying away from being involved in campus activities results and fostering belonging thus becomes difficult. ‘i don’t know why our swds don’t want to be involved in things on campus. i think it’s accessibility, accessibility to the buildings for those who are in a wheelchair.’ (participant 12, female, 36 years) for participant 6 the location of the disability unit on the top floor makes it unlikely that wuss will feel a sense of belonging and having their needs acknowledged and respected. ‘and first of all [raising the voice] we are in the second floor, i mean really. second floor, lift broken, how do my students get to me, how can they come and write exams? if it’s first week of orientation, how can i get to them? i have to walk downstairs to meet with the students. because of my disability i’m not allowed to climb stairs. one of my staff members also has a disability, she is not allowed to climb stairs too. then what do we do? i can’t foresee us moving downstairs, but we have to.’ (participant 6, female, 63 years) according to ginsberg and wlodkowski (2009), an accessible university-built environment gives swds a sense of belonging in the form of ‘welcome[ing] a diversity of learners and cause them to feel safe, capable and accepted, thus enhancing their overall learning experience’ (cited in van jaarsveldt & ndeya-ndereya 2015:2). it is perhaps the opposite of being wholeheartedly welcomed into a place to be forced to enter or exit an educational or residential building from the back. ‘inclusive education means that you reach all your students in your classroom. outside the classroom, inclusive education is about creating a space where everybody feels welcome, so if you have the residence and you have the first floor accessible and there is not a lift to the second floor a student with a wheelchair won’t be able to, will never be able to visit his friends on the second floor, so his friends must come and visit him in his room all the time. and what also happens is that you have the first floor, the step and then have the dining hall. so now when a student in a wheelchair wants to move to the dining hall he has to go from the outside, so do you feel welcome there? if you have to use the back door, so to make them aware of removing that step to make the student move within a residence, to put in a lift or whatever, but it will cost money. and also, structural barriers that you have to remove and also attitudes.’ (participant 8, female, 39 years) ‘don’t make their entrance or exit from the building far from others. they must always make sure that they feel special. the same entrance that others are using, just next to it. make sure that there is inclusion. don’t put it there at the back or something, it’s another element of discrimination according to me. make them feel at home. it’s like you are hiding them. make sure that also the inclusion its where others will acknowledge them. it’s in a way that will give them dignity, some level of dignity to say that i’m also a human being. that’s why even here we don’t even think of them as differently abled.’ (participant 13, male, 32 years) for claudine sherill (2004), social inclusion has to do with, for example, students with and without disabilities interacting with one another reciprocally. physical barriers compromise the prospect of these forms of reciprocal friendships flourishing, confining, for instance, wuss to specific areas and spheres of movement and interaction. concluding remarks dusms know what ought to be done to make campuses accessible and welcoming to wuss among other swds. however, their structural position in universities often means that they are powerless to influence policy implementation in practice. the goal of inclusive education is ‘supporting students with disabilities to be involved with their non-disabled peers to the maximum extent possible’ (dalton et al. 2012:2). however, wuss are still not being afforded full membership status at many south african universities and a lack of adequate access to such basic services as libraries, toilets and transportation makes it difficult for these students to participate fully in both the academic and social aspects of campus life and to reach their full potential. often, resource constraints are invoked as the reason for why this is the case but, as tania burchardt (2004) has pointed out, ‘provisions necessary to meet the needs of people with impairments are demanded as a matter of right, rather than being handed out as charity to supposedly passive, grateful recipients’ (pp. 736–737). the concept of ‘design for all’ when building new buildings or when rehabilitating old buildings ‘is an approach that means all products, environments and services are designed to function for as many people as possible’ (sfv 2014:4). the concept of design for all requires all key stakeholders such as architects, designers and accessibility officers and other experts to work in collaboration and consultation with pwds in order to arrive at innovative solutions and achieve optimal results. south african universities are not yet at this point. although some do collaborate with or consult with dusms in the building of new buildings or rehabilitating old buildings, dusms often occupy a marginal position in these consultations. their relative powerlessness in the overall university hierarchy often means that their voice is occluded by other considerations such as heritage preservation or cost. as a result, commitments to ud and full inclusion often remain unrealised in practice. there is a lack of consultation with, and taking seriously the views of, end users of core university facilities – such as libraries, toilets and transportation – without full access to which wuss cannot flourish at university or feel welcomed in these environments. in order for heis to effectively identify factors that enable or hinder wuss’ use of facilities, greater involvement and participation of the latter in decision making is critical: ‘greater focus must be placed on listening to the voices of people with disabilities, to enable the development, implementation and evaluation of truly disabled friendly policies and programmes’ (singal & jeffery 2009:16; see also imrie & hall 2001:337). those responsible for the planning, designing, adapting or upgrading of the built environment of campuses, especially architects, need to consult with swds for their input regarding their views, experiences and ideas, which are an essential component of creating genuine accessibility. rather than fully embracing ud and access as non-negotiable principles, we find south african universities framing access as one among a variety of competing interests in a context of scarce resources. this makes it difficult for dusms to have their voices heard or taken seriously in the implementation of practices that would result in universities’ built environments being truly accessible to wuss. what we often see are quick fix solutions and ad hoc approaches rather than the systematic implementation of ud aimed at full access for all. non-compliance with legal obligations attracts little in the way of sanction, and management routinely cite heritage preservation and cost implications as reasons for failing to take the necessary steps to make universities universally accessible and achieve the goal of full inclusion. dusms can play a leading role in sensitising the non-disabled members of universities, both staff and students, in order to create greater awareness of, and appreciation for, the multiple ways in which wuss continue to be excluded from full participation in university life. south african universities need to adopt a systemic approach to inclusion, which includes support staff, management and lecturers in the process of disability inclusion and fosters an understanding of inclusion as a fundamental right rather than as a luxury, which is dependent on affordability. inclusion, moreover, must extend not only to the academic aspects of student life but all areas of campus life including socialising. although there is a need to prioritise fundamental services such as libraries, toilets and transportation, student life is also about sports, recreation, cafeterias, shopping and cinemas and wuss are as entitled to full participation in these aspects of life as any other person. respect for diversity requires that barriers to such full participation be removed, regardless of competing interests of the costs involved. approaches to attaining this goal, moreover, need to be systematic, proactive rather than reactive and require a commitment on the part of the management and leadership of universities rather than relegating the sole responsibility for speaking up on behalf of swds to dusms who often occupy a position on the margins of power and influence in universities. acknowledgements we would like to acknowledge and express that we are grateful for the financial support received from the national institute for the humanities and social sciences (nihss) towards this study. competing interests i declare that i have no financial or personal relationship(s) that may have inappropriately influenced me in writing this paper. authors’ contributions this study draws on d.c.’s current phd research project at rhodes university of which l.v. is the supervisor. references agarwal, a., 2012, ‘steps towards inclusion: access for 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wolanin, t.r. & steele, p.e., 2004, higher education opportunities for students with disabilities, the institute for higher education policy, washington, dc, viewed 4 november 2016, from http://www.ihep.org world health organization (who) & the world bank, 2011, world report on disability, viewed 8 august 2016, from http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf footnotes 1. teletype device allows deaf people to type their messages instead of speaking, often abbreviated as tty. 2. convention on the rights of persons with disabilities, 2006. 3. ‘the national heritage council of south africa is a statutory body that is responsible for the preservation of the country’s heritage. since its existence on 26 february 2004, it has managed to place heritage as a priority for nation building and national identity’ (national heritage council, 2016). abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) jerome p. fredericks division of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa surona visagie division for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lana van niekerk division occupational therapy, department of health and rehabilitation sciences, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation fredericks, j.p., visagie, s. & van niekerk, l., 2025, ‘barriers and facilitators experienced by wheelchair users when using minibus taxis in africa: a scoping review’, african journal of disability 14(0), a1701. https://doi.org/10.4102/ajod.v14i0.1701 original research barriers and facilitators experienced by wheelchair users when using minibus taxis in africa: a scoping review jerome p. fredericks, surona visagie, lana van niekerk received: 25 feb. 2025; accepted: 17 oct. 2025; published: 10 dec. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: accessible transport is essential for achieving the sustainable development goals. persons with disabilities often struggle to access public transport with different impairments leading to unique access barriers. wheelchair users face physical and attitudinal challenges when accessing minibus taxis, a common mode of public transport in africa. objectives: the objective of this review was to explore the barriers and facilitators that wheelchair users in african countries experience when using minibus taxi services. method: the scoping review followed the preferred reporting items for systematic reviews and meta-analysis guidelines for reporting on scoping reviews as well as the joanna briggs institute scoping review guidelines. eight databases were searched. two reviewers screened articles in rayyan. data were analysed and synergised through a convergent integrated approach. results: the literature search yielded 236 titles, of which 20 were included after further review. studies were from four african countries, mostly south africa (n = 14), ghana (n = 4), sierra leone (n = 1) and zimbabwe (n = 1). key findings such as structural (obstructed sidewalks, potholes), mechanical (vehicle design), economic (paying for wheelchairs and carers), attitudinal (impatience, rudeness) and institutional (ableism, lack of political will) barriers and facilitators were identified. conclusion: despite minibuses having evolved into a cheap mode of public transport in most african countries, their design and operating practices still prevent wheelchair users from using them with ease and dignity. contribution: this review presents barriers and facilitators that wheelchair users experience when using minibus taxi services. future research should focus on reconfiguring transport services offered by minibus taxis to provide equal access for wheelchair users in africa and beyond. keywords: access; wheelchair users; transportation; minibus taxis; barriers; facilitators; low-income countries; universal access. introduction it is estimated that more than 80 million people in africa are living with some form of disability. this number constitutes between 10% and 20% of the general population of africa (disabled world 2022). persons with disabilities often face inequality, exclusion, a lack of opportunities, unemployment and poverty. they are often relegated to the margins of society (bjerkan & øvstedal 2020; tennakoon et al. 2020). among the complex causes of inequality and exclusion related to disability are challenges regarding community mobility, which includes the use of public transport (bekiaris et al. 2018; mindell et al. 2025; park, chowdhury & wilson 2020). being able to negotiate public transport systems independently facilitates a feeling of belonging and dignity among persons with disabilities (chapman et al. 2024). achieving many of the sustainable development goals, such as good health and well-being, quality education, decent work and economic growth as well as sustainable cities and communities, requires, among other things, investment in inclusive, sustainable, accessible and safe public transport (united nations 2015). in addition, the right to health, education, employment and other basic human rights as ensconced by the united nations convention on the rights of persons with disabilities (united nations 2006) is dependent on access to transport. community mobility opportunities must be created for all, especially for people considered most vulnerable such as women, children, persons with disabilities and older persons (united nations 2015). however, vanderschuren and nene (2021) found that except for ghana and south africa, persons with disabilities are omitted from or superficially included in transport policies of african countries. international and south african policies and legislation such as the disability inclusive public transport brief (frye 2019) supported by the united kingdom department for international development and the transformative urban mobility initiative (tumi) and the south african white paper on the rights of persons with disabilities (department of social development [dosd] 2016) advocate for inclusive public transport. even with these policies, there is a general neglect of the barriers confronting persons with disabilities when wanting to access public transport (fredericks, visagie & van niekerk 2024a, 2025a, 2025b) across the globe (mindell et al. 2025; unsworth et al. 2021), but more so in middleand low-income countries (kett, cole & turner 2020), including africa (duri & luke 2025; fredericks et al. 2024a, 2025b; lister & dhunpath 2016; ndebele 2020; odame et al. 2023a). wheelchair users are a subgroup of persons with disabilities with unique transport needs. the impairments that necessitate the use of a wheelchair also hinder mobility and the physical ability to access various transport modes (kett et al. 2020). the focus of this scoping review is specifically on the accessibility of minibus taxis for wheelchair users, a common mode of public transport in south africa and other african countries (neumann, röder & joubert 2015). accessibility can be defined in various ways, but definitions usually recognise the interdependence of physical, political, economic and social factors (antipova et al. 2020). wheelchair users face multiple, interrelated access barriers that impact the physical accessibility, affordability, safety and acceptability of minibus taxi services (cawood & visagie 2015; lister & dhunpath 2016; vergunst et al. 2015; visagie, visagie & fredericks 2023). barriers affecting physical access include the height at the entrance to minibus taxis and the distance between the wheelchair and seat that prevents independent transfer to and from minibus taxis for most wheelchair users (chiwandire & vincent 2017; gudwana 2019; pretorius & steadman 2018; vanderschuren, baufeldt & phayane 2015; visagie et al. 2023). while minibus taxi fares are relatively low, affordability is reduced when wheelchair users are charged additional fares for their caregivers and wheelchairs (duri & luke 2022c). the lack of seat belts, reckless driving, overloading and wheelchair users being unable to maintain their balance all cause a sense of feeling unsafe (gudwana 2019; kett et al. 2020; lister & dhunpath 2016). some minibus taxi drivers have a negative attitude towards wheelchair users and do not always stop to pick them up or are impatient and rude when they do stop. the main reason for not picking up wheelchair users is because wheelchair users are slower to embark and disembark, leading to a loss of time and thus money (lister & dhunpath 2016). research have focused on wheelchair users’ access to minibus taxis, either as the primary focus of the study (gudwana 2019; lister & dhunpath 2016) or as a theme that emerged when exploring access to services such as health care (cawood, visagie & mji 2016; north & visagie 2020; vergunst et al. 2015). the aim of this scoping review was to identify research in the field and describe the barriers and facilitators experienced by wheelchair users in african countries when making use of minibus taxis. the review focused on the question: what are the barriers and facilitators wheelchair users in africa experience when using minibus taxi services? research methods and design design the scoping review followed the preferred reporting items for systematic reviews and meta-analysis guideline for reporting on scoping reviews (prisma-scr) (tricco et al. 2018) as well as the updated joanna briggs institute (jbi) guideline for conducting the scoping reviews (peters et al. 2020). the scoping review was conducted to explore existing literature on the experiences of african wheelchair users utilising minibus taxis, with specific attention to the barriers and facilitators influencing their accessibility, to provide background information against which possible solutions could be explored in a further study. the updated jbi guideline (peters et al. 2020) ensures that scoping reviews are methodologically rigorous, transparent and reproducible, helping researchers to map existing knowledge, identify evidence gaps and inform future research, practice and policy. the five steps that were followed included: developing a review question searching studies selecting studies data extraction data analysis, synthesis, and presenting findings. search strategy the search was done between 01 february 2024 and august 2024 by fredericks et al. (2025a), supported by a librarian from stellenbosch university library. the following databases were searched: medline (pubmed), ebscohost (academic search premier, africawide information, cinahl, health source: nursing/academic), scopus, web of science, proquest and sabinet. reference lists of the included articles were searched manually for further articles. a systematic review accelerator was used with the help of a librarian for the development of the search string contained in box 1 (databases search strategy). box 1: databases search strategy. eligibility criteria in accordance with the jbi guidelines, the population, concept and context framework (pcc) were used to define the review parameters (peters et al. 2020): population: wheelchair users. studies were eligible if the participants were wheelchair users or the study focuses on wheelchair users. studies focusing on transport access for persons with disabilities who did not use wheelchairs were excluded. concept: to be included, studies had to focus on accessing minibus taxis as a means of public transport and community mobility. all barriers experienced regarding natural, manufactured or structural, mechanical, environmental, financial, health and safety concerns, attitudinal, psychosocial and institutional as well as all facilitators used to overcome the barriers were included. studies that focused on accessing other modes of public transport and/or private transport were excluded. context: studies from african settings were included. article selection and description references were imported into rayyan, a free online tool (ouzzani, hammady & fedorowicz 2016), that was used for the screening of titles, abstracts and full texts by two independent reviewers (first and second authors). disagreement between the reviewers were resolved through discussion, and no mediation by a third party was needed. as indicated in figure 1, the literature search yielded 236 titles, of which 54 were duplicates. a total of 209 titles and abstracts were screened, of which 171 were irrelevant. a total of 38 full texts were reviewed, and 20 of these were included in the scoping review. figure 1: literature search process. data extraction, analysis and synthesis an excel spreadsheet was created for data extraction that was undertaken by the first two authors. the following data fields were mapped: name of journal, year of publication, first author, aim of the study, study setting, study design, population, number of participants, sampling strategy used, gender, and age range. barriers and facilitators that influenced the accessibility of minibus taxis for wheelchair users were identified across studies and summarised, along with the trends and gaps in the research. both quantitative and qualitative studies were included as research in both paradigms produced findings that answered the review question (cerigo & quesnel-vallée 2020). data were analysed and synergised through a convergent integrated approach. the review question guided inductive coding (zaman 2018). the first and second authors coded the data independently and then reached consensus based on the relevance of codes to the review question. codes were conceptualised into sub-themes using an iterative and consultative process. the sub-themes responded to two deductive themes, that is, barriers and facilitators. the methodological quality of the included articles was not analysed in keeping with scoping review methodology (peters et al. 2017). ethical considerations an application for full ethical approval was made to the health research ethics committee of stellenbosch university, and ethics consent was received on 22 april 2021 (no. s21/01/009). results table 1 shows that of the 20 articles, 19 reported on research and one was an opinion piece. of the 19 research articles, 16 used a qualitive descriptive or explorative design. two studies used a mixed methods design, and two used cross-sectional surveys. one of the surveys included an audit of a central business district (owusu-ansah, baisie & oduro-ofori 2019). most of the studies (n = 14) were conducted in south africa, while four were conducted in ghana and one in sierra leone. of the south african studies, nine were conducted in metropolitan areas and five in rural areas. participant groups included wheelchair users, their caregivers, minibus taxi drivers, healthcare service providers and other experts. table 1: summary of included articles. barriers to minibus taxi use structural environmental barriers structural environmental barriers refer to aspects of the built environment that prevent wheelchair users from accessing minibus taxi services (amin, razak & akhir 2021; bezyak, sabella & gattis 2017). these included factors such as unpaved surfaces, open drains, lack of or uneven pavements without kerb cuttings, street crossings and street furniture (duri & luke 2022c). fourteen of the 20 articles reported on structural environmental factors (aenishänslin, amara & magnusson 2020; duri & luke 2022a, 2022b, 2022c, 2022d; gudwana 2019; lister & dhunpath 2016; ndebele 2020; odame et al. 2023a, 2023b; owusu-ansah et al. 2019; pilusa et al. 2021; tshaka et al. 2023; vergunst et al. 2015). vivid descriptions of structural barriers in urban and rural areas were provided. some reviewed studies found that in urban areas, structural environmental barriers included congested traffic, unpaved, uneven roads and pavements, potholes in roads and pavements, open maintenance holes and drains, rubbish as well as high pavements with no ramps (duri & luke 2022d; ndebele 2020; owusu-ansah et al. 2019; pilusa et al. 2021). traffic lights at street crossings lacked push buttons to ensure sufficient time for safe crossing of pedestrians (and wheelchair users). minibus taxi ranks were often unpaved with uneven, muddy or dusty surfaces. owusu-ansah et al. (2019) and ndebele (2020a) found that street vendors obstructed pavements and access points like ramps and bridges. these barriers, together with congested foot, vehicular and sometimes animal traffic, made wheelchair mobility difficult or impossible and restricted or prevented access to minibus taxi pick-up points (duri & luke 2022c). odame et al. (2023b) reported on inadequate or no shelter at minibus taxi pick-up points. in rural african contexts, the terrain was commonly described by previous studies as rough, with unpaved roads that are narrow, steep and uneven (gudwana 2019; pilusa et al. 2021; tshaka et al. 2023; vergunst et al. 2015). vergunst et al. (2015) showed that hills, valleys, river crossings without bridges and forest areas had to be negotiated by wheelchair, often over long distances, to reach taxi pick-up points. wheelchair users were sometimes unable to leave their yards because of rough terrain and an absence of paths or roads (pilusa et al. 2021). some studies described participants using single-track, uneven, rocky footpaths to reach the actual dirt road (tshaka et al. 2023; vergunst et al. 2015). surfaces of unpaved roads were generally covered with loose gravel or sand in the dry season and slippery mud in the rainy season, making them unsuitable for wheelchair users (vergunst et al. 2015). these findings show that universal access principles were not applied during design and construction of roads, pavements and minibus taxi ranks. mechanical barriers mechanical barriers refer to aspects related to the design of the minibus taxi, such as its height off the ground, seating arrangements, grab handles and seatbelts. five of the studies reported on the mechanical barriers (duri & luke 2022c; odame et al. 2023b; savill et al. 2003; tijm et al. 2011; visagie et al. 2023). one of the most common findings, and arguably the biggest barrier for wheelchair users, related to the height differences during transfers into and out of minibus taxis; distances from the ground to the taxi floor and between the taxi floor and seat were reported to pose challenges (odame et al. 2023b; tijm et al. 2011). because wheelchair users generally have impairments affecting their musculoskeletal systems, standing and/or climbing in and out with such height differentials is impossible (visagie et al. 2023). in addition, commonly used minibus taxis in african settings have no special boarding equipment such as ramps or hoists (duri & luke 2022c). thus, taxi drivers, guards, caregivers or fellow commuters often physically pick wheelchair users up and place them in the minibus taxi; in the process, the wheelchair users are pulled and pushed by persons who have not been trained to do transfers safely and with sensitivity (visagie et al. 2023). because minibus taxi drivers and guards are not trained to physically transfer wheelchair users (duri & luke 2022c; fredericks et al. 2024a; savill et al. 2003), they and wheelchair users alike are at risk of injury during transfers (duri & luke 2022c; north & visagie 2020). duri and luke (2022a) found that minibus taxi drivers sometimes refuse to assist wheelchair users because of a fear of being held accountable if a wheelchair user is injured. the transfer is even more of an ordeal for female wheelchair users who must endure being touched by male strangers (gudwana 2019). in addition, grab handles were not available or not positioned optimally for wheelchair users to use during transfers or for balance during transit (duri & luke 2022a, 2022b, 2022c). alarmingly, most minibus taxis were reported not to have seatbelts (duri & luke 2022a, 2022b). this compromised everybody’s safety and meant wheelchair users with reduced functional balance because of leg and trunk impairments could not rely on the external stability a safety belt would provide (duri & luke 2022a, 2022b; gudwana 2019). fredericks et al. (2024a) described that the limited space inside minibus taxis, with narrow aisles and small seats, leaves little place for movement or to store a wheelchair (north & visagie 2020). owusu-ansah et al. (2019) agreed and pointed out that space limitations were even worse in minibus taxis that were reconfigured to carry more passengers. the already limited space is further reduced resulting in decreased space to manoeuvre, thus making it impossible for those who need transfer assistance and/or space to accommodate their legs because of impairments (owusu-ansah et al. 2019). the described mechanical barriers created a serious access barrier and fed into economic barriers. economic barriers the second biggest barrier to access described in the studies was the perceived reduction in earnings brought about by additional time and space requirements associated with serving wheelchair users. the money a minibus taxi owner and driver earns is dependent on the number of trips made per day and the number of passengers per trip. expressive narrative examples by lister and dhunpath (2016) showed that both taxi drivers and owners saw wheelchair users as reducing their income on both scores. wheelchair users take longer to transfer in and out of the minibus taxi (kahonde et al. 2010; lister & dhunpath 2016; north & visagie 2020), and time is lost (fredericks et al. 2024a; north & visagie 2020), which might mean one less trip at the end of the day. lister and dhunpath (2016) and visagie et al. (2023) described this as the main reason why minibus taxi drivers did not stop to pick up wheelchair users, most especially not during peak hours (kahonde et al. 2010; lister & dhunpath 2016; ndebele 2020; rivasplata & le roux 2018). the wheelchair also takes up space that a paying customer could have occupied; therefore, income is lost if that space is not paid for. if wheelchair users cannot transfer by themselves or depend on the taxi driver and guard for assistance, someone must accompany them, at extra cost. these two factors escalate the taxi fare for wheelchair users, making a trip unaffordable for many (kabia et al. 2019; kirabo, carter & steinfeld 2020; north & visagie 2020). these economic barriers experienced by wheelchair users show that this group is still negatively constructed as a burden or an inconvenience by impatient minibus drivers who do not want to pick up wheelchair users, especially during peak hours. attitudinal barriers the studies reported that wheelchair users were also experiencing insurmountable attitudinal barriers. among others, attitudinal barriers composed of negative beliefs of minibus taxi drivers and co-commuters towards persons with disability, such as impatience, fear and stigma. negative beliefs fuel negative attitudes (visagie et al. 2023). thus, it was no surprise that 12 studies reported on attitudinal barriers (duri & luke 2022c; gudwana 2019; kahonde et al. 2010; lister & dhunpath 2016; ndebele 2020; north & visagie 2020; pilusa et al. 2021; rivasplata & le roux 2018; tijm et al. 2011; visagie et al. 2023). wheelchair users, on the other hand, also experienced a range of negative emotions from social anxiety and feelings of shame and belittling (gudwana 2019; visagie et al. 2023) to being unhappy and angry (duri & luke 2022a, 2022c; north & visagie 2020; tijm et al. 2011) when using minibus taxis. these attitudinal barriers result in an unacceptable level of service that negatively affects the self-esteem and confidence of wheelchair users. when combined with other existing barriers, they often cause wheelchair users to avoid using minibus taxis, even though this mode of transport is one of the most affordable options available. institutional barriers the findings also reported that wheelchair users were experiencing institutional barriers, which included lack of political will among politicians and local government officials, leading to poor implementation or non-existent legislation, policies and strategic planning (vanderschuren & nnene 2021). however, according to duri and luke (2022c) and rivasplata and le roux (2018), it is one of the main reasons of inequitable access to minibus taxis services. four studies reported on institutional barriers (duri & luke 2022c; lister & dhunpath 2016; odame et al. 2023a; rivasplata & le roux 2018). findings indicated little collaboration between stakeholders in transport systems with different groups operating in silos. studies reported that wheelchair users were not involved in the planning of minibus taxi services. without hearing their voice, their needs cannot be addressed (duri & luke 2022a, 2022c; rivasplata & le roux 2018). odame et al. (2023a) indicated that no one takes the responsibility or leadership to drive the agenda with regard to accessible minibus taxi transport for wheelchair users. without policies and the political will to enforce implementation, wheelchair users might continue to struggle to access minibus taxis. structural, mechanical, economic, attitudinal, and institutional facilitators to minibus taxi use facilitators to minibus taxi access for wheelchair users were less of a focus than barriers in the reviewed studies. only five of the studies addressed facilitators. the facilitators identified in the five studies primarily focused on recommending potential solutions to existing barriers, rather than empirically evaluating the feasibility or effectiveness of those proposed solutions. duri and luke (2022d) indicated that local authorities should do periodic infrastructure audits of pedestrian environments and sidewalks. these audits should provide guidance on the need for maintenance, repair and upgrading. similarly, regular audits of the conditions of minibus taxi ranks should be conducted, and wheelchair users should be involved in these audits (duri & luke 2022d). finally, duri and luke (2022d) recommended that universal access principles are applied during planning and development of new minibus taxi ranks. three studies reported on mechanical facilitators. duri and luke (2022a) recommended regulations for the manufacturing of minibus taxis that include the placement of grab handles at suitable places for wheelchair users, seatbelts on all seats and more leg-room. they further stated that minibus taxis should be compliant with universal access principles. a recommendation by odame et al. (2023b) was that minibus taxi drivers should consider reserving or prioritising some seats for wheelchair users. tijm et al. (2011) recommended specially modified minibus taxis for wheelchair users. lister and dhunpath (2016) suggested that subsidies, coupons, or contracts to provide transport for wheelchair users on specific routes might help reduce the cost of taxi services for individual wheelchair users and ensure that taxi drivers do not lose money when providing services to wheelchair users. contract services hold the additional advantage that wheelchair users and local government can keep minibus taxi drivers accountable for rendering services. it will also ensure minibus taxi services will be available for wheelchair users on a regular basis (lister & dhunpath 2016). duri and luke (2022c) suggested that private capital is found, and the private sector be asked for financial assistance to address the economic barriers. duri and luke (2022c), lister and dhunpath (2016) and gudwana (2019) addressed attitudinal facilitators. they suggested broad education and awareness-raising on disability starting at schools and in homes to reduce attitudinal barriers. furthermore, they suggested training and education for minibus taxi drivers on the transport needs of wheelchair users as well as how to communicate with and assist wheelchair users during transfers. lister and dhunpath (2016) suggested that vouchers be made available to cover the cost of the education and skills training of taxi drivers. it is hoped that with training, taxi drivers will have a more positive attitude towards wheelchair users and that wheelchair users will experience less stress and anxiety when using minibus taxi services (lister & dhunpath 2016). three studies reported on institutional facilitators (duri & luke 2022a; odame et al. 2023a; lister & dhunpath 2016). the focus was on including the voice of the wheelchair users in planning and a stronger political will to drive implementation of policy and legislation. the only way for policymakers and service providers to understand the experience of wheelchair users is to hear their voice through making them part of the planning processes. odame et al. (2023a) highlighted the importance of establishing a wheelchair user-inclined transport policy with actionable penalties, including that minibus taxi drivers who do not comply with policy requirements face fines or possible prison terms. as indicated, these suggestions might act as facilitators to minibus taxi access for wheelchair users, but they must be explored in future research. discussion the aim of this scoping review was to identify and describe the barriers and facilitators experienced by wheelchair users in africa when making use of minibus taxis. while the use of minibus taxis for public transport seems to be rather unique to the african context, the barriers experienced by current participants are echoed in studies and reviews that focus on public transport (bus, train, taxi, ferry, streetcar) access for persons with mobility impairments or wheelchair users from around the world (chapman et al. 2024; hernandez & rodriguez 2024; liu et al. 2023; miller et al. 2025; park et al. 2023; unsworth et al. 2021). what was heartening was the sentiment shared by unsworth et al. (2021) that despite numerous barriers, public transport access for people using wheeled mobility devices is constantly improving worldwide. however, africa was notably missing from the world regions mentioned by them. current results showed that wheelchair users’ difficulties started when leaving their homes with structural barriers in what park et al. (2023:189) call the ‘out of vehicle environment’, preventing them from reaching and manoeuvring around minibus taxi pick-up points. infrastructure barriers such as the absence of or poorly maintained sidewalks and inaccessible stations limited access to public transport for wheelchair users globally (liu et al. 2023; mindell et al. 2025; unsworth et al. 2021). as structural barriers are often human-made (duman & asilsoy 2022), they are avoidable and should not occur in equitable societies. barriers like potholes, occupied pavements and no bridges over rivers are a few of the visible consequences of deep-rooted inequality and disregard for vulnerable members of society. in their systematic review study on pavement accessibility, soares müller et al. (2023) highlighted that the entire segment of a sidewalk must be free of barriers for it to be considered accessible for persons with disabilities. one obstacle along the way can prevent access to the entire route. they argue that the importance of accessible sidewalks is not always acknowledged in global south countries, as could be seen in this study as well. for safe wheelchair use, sidewalks must be wide enough, not overly sloped, well maintained and free of obstacles with regular kerb cuts (soares müller et al. 2023). structural barriers link closely to institutional barriers, which explains why legalisation and policies are not being implemented (duri & luke 2022b; kett et al. 2020; lister & dhunpath 2016). limited financial resources are often blamed for poor policy implementation in african settings (hoeyi & makgari 2021; mhazo & maponga 2022). however, insufficient recognition is given to contributing factors, such as a lack of political will, other priorities, widespread corruption and disregard for vulnerable persons that are endemic in south africa. in addition, seeking the input of persons with disabilities during planning and development of transport infrastructure is a necessity if they are to use the infrastructure autonomously and safely (hernandez & rodrigues 2024; soares müller et al. 2023). however, they are not always consulted in the development and implementation of community mobility planning (hernandez & rodrigues 2024; soares müller et al. 2023). disregard can be driven by unfamiliarity and a lack of understanding of the other’s position. in the context of the current review, decision-makers might have little knowledge and understanding of the ground-level pressures and expectations of drivers, fellow commuters and wheelchair users. thus, awareness-raising and education are called for. at the same time, participative processes of planning and action are essential (duri & luke 2022a; kett et al. 2020; lister & dhunpath 2016; savill et al. 2003; vanderschuren & nnene 2021). the transformative power of participatory processes in which taxi drivers and persons with disability shared experiences and planned together has been illustrated (fredericks et al. 2024b). should government fail in this responsibility, private enterprise and non-governmental organisations (ngos) can take it up, as was done by shonaquip social enterprises with the development of the let’s talk mobile application for parents (trafford et al. 2020), which provides an opportunity for parents of children with disabilities to help monitor implementation of the white paper on the inclusion of persons with disabilities (dosd 2016). the identified barriers often revolved around the attitudes and actions of taxi drivers. they were seen as disrespectful, rude, unwilling to stop, unwilling to help, in a hurry and focused on making money. chapman et al. (2024) found that being treated with disrespect and as a burden negatively impacted the self-worth of wheelchair users in australia. a systematic review by park et al. (2023) confirms that negative attitudes and negative encounters with service providers and fellow commuters reduce self-confidence and increase anxiety among persons with disabilities when using public transport. however, current results also acknowledged the predicament minibus taxi drivers face in safeguarding their incomes and/or businesses. it was suggested that taxi drivers be trained on communicating with wheelchair users and assisting them into and out of the taxi (duri & luke 2022c; lister & dhunpath 2016). unsworth et al. (2021) also recommended training of transport vehicle operators. familiarity and understanding foster empathy and break down fear and anxiety, which means that training might also change taxi drivers’ attitudes towards wheelchair users (savill et al. 2003). however, the recommendation is difficult to enact as minibus taxi drivers are not required to complete a formal training course (department of transport 2020). such courses would have provided an opportunity for training on assisting wheelchair users. even so, it remains an important possible facilitator that needs further exploration. persons with disabilities, including wheelchair users, often live in poverty. because of little income and competing needs, wheelchair users struggle to afford minibus taxi fees even while it is the cheapest form of public transport (aenishänslin et al. 2020; duri & luke 2022c; fredericks et al. 2024; magaqa et al. 2021; ndebele 2020; north & visagie 2020; odame et al. 2023a; vergunst et al. 2015; visagie et al. 2023). transport cost as a barrier to access and a reason for cutting down on travelling was found around the globe for different types of transport, such as trains and buses (fredericks et al. 2024a; park et al. 2023); (fredericks et al. 2025b; mindell et al. 2025). wheelchair users do not get special rates when using minibus taxis (odame et al. 2023b). they also do not receive financial support to specifically compensate for minibus taxi costs. the money must come from the social grant that also pays for food, medication and other costs of living. in addition, having to pay for caregivers and wheelchairs means they might pay three times the going rate per trip (fredericks et al. 2024a). the financial burden on wheelchair users can be alleviated through subsidies, coupons or contracts facilitated by local government. by providing taxi drivers with contracts to transport wheelchair users, the government will be able to stipulate agreements regarding routes, accessibility of vehicles and training of minibus taxi drivers on interacting with persons with disabilities and assisting wheelchair users safely into and out of minibus taxis. wheelchair users must have a voice in the planning and budget allocation of such services to ensure that their needs are met (morta-andrews 2018). as in this study, inaccessibility of public transit vehicles was also described by liu et al (2023) referring to buses in the united states, and park et al. (2023) in a systematic review. minibuses became taxis by default and were never designed with the needs of wheelchair users in mind (duri & luke 2022a, 2022b). they are manufactured in bulk on assembly lines; thus, individual modifications are costly. changing their design or retrofitting vehicles currently in use will also be expensive and not easy to do (park & chowdhury 2022). unsworth et al. (2021) indicated that further research is necessary to determine optional vehicle design to facilitate access for persons with mobility impairments. the use of ramps for boarding and research on optimal ramp design was also mentioned by unsworth et al. (2021). in the meantime, stakeholders can engage with minibus taxi designers regarding the position of design features such as grab handles. the number of grab handles can be increased, and they should be placed where they can be of maximum benefit to wheelchair users. adding more grab handles at strategic places inside the minibus taxis will assist wheelchair users and the general public alike. most of the other mechanical barriers can only be addressed through costly changes, such as modifying individual vehicles or reducing the passenger-carrying capacity. odame et al.’s (2023b) suggestion for a dedicated seat with priority access given to vulnerable commuters is strongly supported as a starting point. that way, if a wheelchair user is transported, they get that seat, but if not, other commuters can use it. other commuters know that should a wheelchair user be picked up, they must vacate the seat if it is in use. across african countries, similar barriers impacted the accessibility of minibus taxi services and wheelchair users’ experiences to such an extent that their combined effect made it difficult for most, and impossible for some, to use the services. international authors concur that if the identified barriers are not mediated, wheelchair users’ freedom of movement will remain restricted, and they will continue to be excluded from community participation (bjerkan & øvstedal 2020; cepeda, galilea & raveau 2018; tennakoon et al. 2020). at societal level, many sustainable development goals (sdgs), such as no poverty, good health and wellbeing, quality education, sustainable economic growth and productive employment, reduced inequalities, sustainable cities and communities will not be achieved (united nations 2015). universal design principles have been in existence since the 1960s and should underpin the development and maintenance of manmade spaces. current application of universal design principles is often inconsistent (chapman et al. 2024). unsworth et al. (2021) recommended that universal design principles be promoted in the public transport sector. however, social and occupational injustice will prevail when the political and communal will to implement mitigating strategies is lacking, as was shown in this review and supported by zallio and clarkson (2021) as well as stafford and volz (2016). limitations limited findings on facilitators for accessible minibus taxis for wheelchair users were identified. the lack of analytical studies was also a limitation and indicates a need for future research. the inclusion of only wheelchair users from the african continent was another limitation. conclusion minibuses were not designed to be used as taxis or as a means of transport for wheelchair users. their versatility, the dire transport needs in south africa and other african countries and entrepreneurship have meant they evolved into taxis. non-disabled commuters can get in and out, tolerate the cramped space and even take the safety risks – often because alternatives are limited and minibus taxis offer cheap and convenient services. conversely, wheelchair users are excluded from what would be, for many, their only form of public transport because they are hampered getting in and out, need more room to manoeuvre, are faced with rudeness and disrespect and lose the advantage of the fare being low, as they must pay double or triple fares. the question that remains for future investigation is: ‘how can transport services offered by minibus taxis be reconfigured to be accessible for wheelchair users?’ recommendations the findings of this scoping review can assist with future planning of public transport services in general and minibus taxi services specifically for wheelchair users in the african context and other similar settings. the identified barriers and suggestions for facilitators can assist researchers and other interested parties in developing and researching focused strategies to overcome specific structural, mechanical, economic, attitudinal and institutional barriers. the results provide policymakers and local governments with specific areas of concern that they can address to facilitate accessible minibus taxi services for wheelchair users. wheelchair users and taxi drivers must be active participants in planning and design of services they respectively provide and use. universal design principles should be included in all future public transport planning and implementation. acknowledgements the author, jerome p. fredericks, would like to acknowledge all the co-researchers for providing their consent and willingness to participate in the inquiry, rev. j. pansegrouw for the availability of the venue; ms m. johnson for her support; mandy fredericks for assisting with logistics, the supervisors surona visagie and lana van niekerk and research assistant hamilton pharaoh. this article is based on research originally conducted as part of jerome p. fredericks’s doctoral thesis entitled ‘minibus taxis as a means of transport for wheelchair users: a co-operative inquiry in a low-income peri-urban setting in the western cape, south africa’, faculty of medicine and health sciences, stellenbosch university, in 2025 with supervisors surona visagie and lana van niekerk. the manuscript has since been revised and adapted for journal publication. the original thesis is available at: https://scholar.sun.ac.za/server/api/core/bitstreams/747b73fb-b7f6-4e3d-bd4b-428bbd84809a/content. competing interests the authors reported that he received funding from the national research funds which may be affected by the research reported in the enclosed publication. the authors have disclosed those interests fully and have implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions jerome p. fredericks formulated the research aim and objectives with the primary study leader surona visagie. surona visagie and lana van niekerk provided academic guidance, mentorship, supervision and editing contributions throughout the research, including the formulation of the objectives, design of the work and data analysis, and contributed to the writing and editing of the manuscript. funding information this article was supported by the national research foundation (no. ttk240408212856). data availability the datasets generated and analysed to support the findings of this study are available from the corresponding author, jerome p. fredericks, upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors or that of the publisher. the authors are responsible for this article’s results, findings and content. references aenishänslin, 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building and environment 206, 108352. https://doi.org/10.1016/j.buildenv.2021.108352 zaman, r., 2018, ‘an integrated approach to corporate governance and corporate social responsibility: the case of new zealand’, phd thesis submitted in partial fulfilment of the requirements for the degree of doctor of philosophy, lincoln university. abstract introduction research methods and design results discussion conclusion acknowledgements references appendix 1: results from the pure tine audiometry for all test subjects. about the author(s) tron v. tronstad digital department, sintef, trondheim, norway bjørn gjessing department of neuromedicine and movement science, faculty of medicine and health sciences, norwegian university of science and technology, trondheim, norway department of otorhinolaryngology, lovisenberg diaconal hospital, oslo, norway ingvild ørland department of neuromedicine and movement science, faculty of medicine and health sciences, norwegian university of science and technology, trondheim, norway tone øderud digital department, sintef, trondheim, norway cosmas mnyanyi department of psychology and special education, faculty of education, open university of tanzania, dar es salaam, tanzania isaack myovela department of hearing impairment, patandi college of special needs and inclusive setting, arusha, tanzania jon øygarden digital department, sintef, trondheim, norway citation tronstad, t.v., gjessing, b., ørland, i., øderud, t., mnyanyi, c., myovela, i. et al., 2022, ‘a case study of interventions to facilitate learning for pupils with hearing impairment in tanzania’, african journal of disability 11(0), a974. https://doi.org/10.4102/ajod.v11i0.974 original research a case study of interventions to facilitate learning for pupils with hearing impairment in tanzania tron v. tronstad, bjørn gjessing, ingvild ørland, tone øderud, cosmas mnyanyi, isaack myovela, jon øygarden received: 08 nov. 2021; accepted: 15 july 2022; published: 10 nov. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: hearing is essential for learning in school, and untreated hearing loss may hinder quality education and equal opportunities. detection of children with hearing loss is the first step in improving the learning situation, but effective interventions must also be provided. hearing aids can provide great benefit for children with hearing impairment, but this may not be a realistic alternative in many lowand middle-income countries because of the shortage of hearing aids and hearing care service providers. objective: in this study, alternative solutions were tested to investigate the potential to improve the learning situation for children with hearing impairment. method: two technical solutions (a personal amplifier with and without remote microphone) were tested, in addition to an approach where the children with hearing impairment were moved closer to the teacher. a swahili speech-in-noise test was developed and used to assess the effect of the interventions. results: the personal sound amplifier with wireless transmission of sound from the teacher to the child gave the best results in the speech-in-noise test. the amplifier with directive microphone had limited effect and was outperformed by the intervention where the child was moved closer to the teacher. conclusion: this study, although small in sample size, showed that personal amplification with directive microphones did little to assist children with hearing impairment. it also indicated that simple actions can be used to improve the learning situation for children with hearing impairment but that the context (e.g. room acoustical parameters) must be taken into account when implementing interventions. contribution: the study gives insight into how to improve the learning situation for school children with hearing impairment and raises concerns about some of the known technical solutions currently being used. keywords: hearing impairment; personal sound amplification system; speech-in-noise test; hearing interventions; school children. introduction globally, there are about 466 million people (6.1% of the world’s population) with hearing loss (hl), of which approximately 34 million are children (world health organization 2020). nearly 90% of people with hl live in lowand middle-income countries (lmics), often lacking the resources and services to address hl (world health organization 2018). hearing loss may be mild, moderate, severe or profound and can affect one or both ears. without a systematic approach of detecting hl, only those with more severe hl are detected, often by the community (guardians, teachers, health workers and peers). this means that persons with mild to moderate hl often go undetected, even if such hl still leads to difficulty in hearing conversational speech (world health organization 2020). as listening is a main form of learning, children with hl often have lower school performance than children without hl (flexer, millin & brown 1990; lieu et al. 2010). in many lmics, children with hl and deafness are vulnerable to dropping out of school, not achieving expected learning goals or never going to school, with girls being more at risk of dropping out or never attending (njelesani et al. 2018; unicef n.d.; world health organization 2020). lack of education affects adult life with respect to obtaining and maintaining employment. public awareness about childhood hl in lmics is often poor and often aggravated by negative attitudes, superstition, traditional customs and cultural beliefs (swanepoel, störbeck & friedland 2009). children with disabilities, including hl, are therefore more vulnerable to physical, social, emotional and sexual abuse and even murder (njelesani et al. 2018; olusanya, neumann & saunders 2014). as undetected hl is an ‘invisible’ impairment, children are often misunderstood as slow learners or impudent when they do not respond to questions or requests. this was exemplified by dr olusanya in an interview given in 2019. she was born in nigeria with a mid-frequency hl that was not detected until she was an adult. she remembered growing up angry because of frequent and unjustified punishment for not doing as she was told, even though she always did everything that she could hear (cousins 2019). in an ongoing project in tanzania, the prevalence of hl among school children was assessed. in 2019, the prevalence was found to be between 7% and 17% of school children in kilimanjaro, tanzania (solvang et al. 2020). a review of prevalence studies from 1993 to 2012 in a range of african countries reported similar numbers (3% – 21%), indicating that the situation had not changed for decades (mulwafu, kuper & ensink 2016). the prevalence of hl in children in lmics is substantial, and establishing hearing care services for these children can help millions to achieve a better education. an estimated 75% of hl in children under 15 living in lmics is preventable (world health organization 2020). this was supported by the kilimanjaro study mentioned here, where 58% of the children with hl had impacted earwax or foreign bodies in their ears and 31% had ear infections (solvang et al. 2020). the literature review by mulwafu et al. (2016) also reported that the most common cause of hl was middle ear disease (36%), followed by undetermined causes (35%) and earwax blocking the ear canal (24%). unfortunately, in most lmics, including tanzania, children are not screened for hl and preventive measures are rarely accessible. in the ongoing project reported in this article, the goal is to develop a sustainable hearing screening programme for school children in tanzania. identifying children with hl is the first step towards improving their learning situation. however, it is important to observe that detection alone is not sufficient to solve the problem. a study in malawi found that only 3% of the children found with hl attended their referral appointment with an ear and hearing service (bright et al. 2017). the most common causes for not attending were found to be transport difficulties, lack of information regarding the referral and financial constraints. the indirect cost associated with, for example, transport and food has been found to be a substantial barrier to persons attending healthcare sessions, even in countries with free medical care (bright et al. 2017; mahande et al. 2007). a follow-up of the malawi study found that counselling by a trained community health worker and an ‘expert mother’ (i.e. a mother of a child who had previously attended a referral appointment), using information booklets and sms reminders, was effective in improving the uptake (baum et al. 2019). it is known that children with permanent hl may benefit from assistive hearing technology, for instance hearing aids, personal sound amplifiers or other ‘over-the-counter’ amplification products. hearing aids are the best solution but need to be fitted properly to the user’s ears and hearing. the user must also be followed up with counselling and adjustment during the first period of use, and the hearing aid might need technical servicing, including change of batteries. all these components are known to be important for a successful introduction to wearing a hearing aid; thus, it is essential that hearing centres are readily available to achieve a good implementation. this is not the case in most lmics; hence, hearing aids are not the most suitable technology. personal sound amplifiers do not need to be fitted individually, and therefore do not need the availability of local hearing centres to the same extent. some studies also indicate that persons with mild to moderate hl might benefit from such equipment, even though an individually fitted hearing aid outperforms most personal sound amplifiers (brody, wu & stangl 2018; cho et al. 2019; choi et al. 2020). it is known, however, that long reverberation times (rts) and high background noise can compromise the sound quality from such devices (wilson et al. 2011). bad classroom acoustics have also been reported for several decades (berg, blair & benson 1996; fidêncio, moret & jacob 2014; nábělek & pickett 1974; saravanan, selvarajan & mcpherson 2019; wilson et al. 2020), and especially in lmics, there is a lack of regulations and resources to improve the situation. if treatment of common causes of hl (e.g. ear wax and infections) and simple interventions can be provided locally, either at the schools or in distributed centres, this could improve the situation for the children with preventable hl. the children with non-preventable hl will not benefit from such interventions and need other actions. to shed light on this, a study has been performed looking at three low-cost interventions to improve the learning situation for children where hearing aids are not a realistic alternative. this project supports the united nations (un) sustainable development goals: 1 (poverty), 3 (good health), 4 (quality education), 10 (reduce inequality) and 17 (partnerships for the goals). it also ensures user involvement and promotes the philosophies of ‘leave no one behind’ and ‘nothing about us without us’. research methods and design this study aimed to measure speech reception abilities in children with mild to moderate hl in their ordinary learning environments. as a result of the limited sample size, the study used a quasi-experimental design with within-group comparison of interventions. the study took place in the kilimanjaro region in north-east tanzania during two weeks in march 2020. three schools (school a, b and c) were selected based on previous collaboration in the project. to gather sufficient information, each of these children were given a speech reception-in-noise test in a classroom with and without assistive hearing devices and in different positions in the classroom, according to the placement of a loudspeaker. participants a total of eight children participated, four girls and four boys, with mild to moderately severe hl from the three schools. these comprised all the children with permanent hearing impairment in the classes included in the study. the children were selected through a basic hearing screening that consisted of otoscopy and air conducted pure tone audiometry. children with impacted earwax or foreign bodies (e.g. insects, impacted sand and pebbles) in the ear canal and children with visible acute middle ear pathologies or pain were excluded from the study and referred to an ear specialist. all children had to be able to interpret and write numbers on a form to be included. thresholds exceeding 25 hearing loss in decibels (db hl) were considered a hl and both unilateral and bilateral losses were included. the children with hearing impairment had no previous experience with assistive hearing devices. the pure tone average (pta4) for the eight children included in this study can be seen in table 1. the audiograms for each child can be seen in appendix 1. table 1: pure tone average for the frequencies 500 hz, 1 khz, 2 khz and 4 khz. control group in addition to the children with hearing impairment, the teachers were asked to gather a control group of students at each school to fill the classrooms. the criteria for these students were to have no report of hearing problems and to be from the same academic year as the children with hearing impairment. in addition, they also had to be able to interpret and write numbers on a form to be included. these children were included in creating a situation closer to a normal class session, to normalise the acoustics and to be able to study how these students performed on the speech-reception test. these groups consisted of 40, 25 and 35 children at the three respective schools (a, b and c). all children were year 5 students, but their ages varied between 9 and 15 years. testing environment school a was a public school with approximately 400 boys and 360 girls. school b was a private catholic school with approximately 150 boys and 130 girls. school c was a public school with approximately 260 boys and 290 girls and differed from the others by not having any electricity. the classroom construction was very similar in all schools, where the walls were made of cement blocks with a rendered paint finish and the floors were made of concrete. the roofing of all schools was angled, with corrugated iron sheets. two of the schools (a and b) had flat ceilings made of fibreboard material, while one (school c) had corrugated iron roofing that had been left bare without any ceiling material. technical interventions two assistive listening devices were used in this study where both had a simple volume and tone control. the first device was a mino from bellman & symfon (called personal amplifier in this article), used with a pair of supra-aural headphones. it is possible to switch between omnidirectional and a directional microphone-mode with this device, but only the directional mode was used in this study because it is assumed to work best in reverberant conditions. the amplifier with the built-in microphone was placed on the child’s desk pointing at the speaker. the second device was a domino classic from bellman & symfon (called rm-system in this article), which consists of a transmitter with a microphone that is worn by the teacher and a receiver with a pair of supra-aural headphones worn by the student. for the speech reception testing the microphone was hung around the loudspeaker and bags filled with fabrics were used to simulate a torso. this was carried out because the microphone is meant to be hung around the neck of the user. the children were given the equipment the day before the speech-reception testing to try out and become familiar with the equipment. all children were given instructions on how to use it and could freely adjust the controls during the testing. speech recognition in noise-test the children’s speech reception in the classroom was assessed using a beta-version of the digit triplet test (dtt) in swahili. this test was developed during a bachelor thesis (gjessing, glesnes & ørland 2020). the dtt is a closed-set audiometric speech test where digit triplets (e.g. 2-5-1) are presented in speech-shaped noise. a loudspeaker that is designed to simulate a human talker was used to play the test signal (nti talkbox). the loudspeaker was placed in the middle of the front wall on a loudspeaker-stand about 1.5 m from the blackboard and 1.35 m above the ground pointing away from the blackboard. the speech-shaped noise was played back through a consumer radio (musicbaby ipa-318) positioned on the floor pointing towards the blackboard. this was performed to let the noise signal be distributed as evenly as possible in the classroom. the calibration of the loudspeakers was carried out with the sound level meter in one position, 1 m in front of the speech-signal loudspeaker. the dtt speech material, with silent intervals edited out, was used to calibrate the speech-signal loudspeaker. calibration of the speech-noise loudspeaker was performed using the noise itself. the speech signal was fixed at 65 dba, which is a level between ‘normal’ (60 dba) and ‘raised’ (66 db) vocal effort, according to iso 9921 (2003). this is in line with the results found by sato and bradley (2008) and astolfi and pallerey (2008), who investigated both female and male teachers’ vocal effort over a working day and found the average level to be 65.3 dba. bottalico and astolfi (2012) found the level to be 62.1 dba for female teachers. two sound levels were used for the speech-shaped noise. half of the dtts used a noise level of 65 dba and the second half used 70 dba. this was carried out to avoid flooring and ceiling effects. the children with hearing impairment performed one test list (22 digit triplets) while sitting in the front row centre in front of the loudspeaker without any personal hearing devices. next, they all moved to the outermost seats in the classroom, either to the front row right or in the back row centre or left. in this position they performed one test list with the personal amplifier, the rm-system and without any amplification. the children with normal hearing also participated in the testing and were used as a control group – one group in each classroom. these children were sitting in the same position for the whole test except for the children who swapped seats with the participants with hearing impairment. all participants responded nonverbally by writing down all the digits in the digit triplet that they could perceive on an answer sheet. measurement of the room acoustics acoustical variables measured in the classrooms included rt, background noise and speech transmission index (sti). the rt was measured following the guidelines of the engineering method described in iso 3382-2 (2008). six different combinations of microphone and speaker placements were recorded and used to calculate mean rt for all frequencies. to get a single value for each classroom, a mean was calculated using the six 1/3 octave bands between 400 hz and 1250 hz. the background noise was measured using a norsonic nor-140 sound level meter placed in the middle of the classrooms. the measurements were performed in empty classrooms during a normal school day while normal classes were being held in the rest of the school. the speech transmission index was measured following the recommendations in the standard iec 60268-16 (2020) for measurements using the speech transmission index for public address systems (stipa) method. the loudspeaker was placed in the same position as in the speech recognition in noise-test. four positions in each classroom were measured: front row right and centre and back row left and centre, viewed from the teacher’s perspective. a mean was calculated using the results from these four measurements. the classroom was empty during the measurements. with the physical measurements of the rooms and the results from the rt measurements, each classroom’s critical distance was calculated. the critical distance is the point in a room where the level of the direct sound from the sound source and the level of the reflected, reverberant sound is equal (crandell & smaldino 2000). data analysis the statistical analysis was performed using the statistics and machine learning toolbox in matlab (mathworks 2021). a paired t-test was used to compare the results from the dtt for the different interventions. a bonferroni correction was applied to the p-value limit. ethical considerations this study was approved by norwegian centre for research data (reference number 58283) and the national institute for medical research (nimr) in tanzania (reference number nimr/hq/r.8a/vol.ix/3009). the head of school at each school was introduced to the project and signed a consent form on behalf of the participating children’s guardians. the mandate to do this was given by the district’s education officer. it was voluntary to participate and the children were free to withdraw from the project at any given time. results a description of the classrooms in the study can be found in table 2, including dimensions and the acoustical parameters. table 2: classroom description. table 3 shows the mean dtt scores for the students with normal hearing (two sequential desk-rows with two students at each desk) in different positions in the classrooms. as expected, the mean srt score for the front row centre position had the highest mean with the smallest spread of scores in all three schools. a less obvious finding was that front row right position had a lower mean than the back row centre position in schools b and c. the distance between the loudspeaker and the student’s desk in the back row centre position was longer than between the loudspeaker and the front row right position in all three schools, which highlights that the angle between the talker and the listener influences the speech perception. in both schools b and c, the back row left position had the lowest mean score. table 3: digit triplet test scores for students with normal hearing in different positions in the classrooms at the different schools. the results are the mean value of four children in each position, with standard deviations in brackets. because of differences in the room acoustics between the classrooms used in the experiments, the dtt results collected at the different schools were analysed separately. figure 1 shows the dtt score for each of the eight students with hearing impairment. with the rm-system, all test subjects scored 100%, except one who scored 97% on the test, regardless of the position in the classroom. because of this saturation, the rm-system was removed from the statistical comparison of groups, but this intervention outperforms all the others with close to full score for all the children with hearing impairment. figure 1: digit triplets test scores for the eight students with hearing impairment at the three schools. a paired t-test showed that when the students were seated in the outermost seats in the classroom, the use of personal amplifier (m = 54.0, s.d.= 16.52) did not improve the results from the situation without an assistive listening device (m = 50.9, s.d.= 22.62); t(7) = –0.6434, p = 0.54. when the student moved closer to the speaker (m = 85.6 s.d.= 20.02), there was a significant improvement compared with no personal amplifier: t(7) = –11.50, p < 0.001 and compared with personal amplifier: t(7) = –8.28, p < 0.001. limitations even though this study aimed at preserving an ecologically valid situation, where the children performed a speech reception test in a familiar context of the classroom surrounded by their classmates, there are several limitations. firstly, the number of participants with hearing impairment was small (only eight children). this makes it difficult to draw any strong conclusions, and the results should be viewed as indications. nonetheless, the statistical analysis did show significant improvements of the speech recognition for two of the interventions. next, all the children with hearing impairment had the possibility to adjust the volume and tone control of the devices during the test. the settings were not inspected, so it is possible that some of the children had misadjusted their devices. this is, however, a realistic scenario for these devices. both devices were also found to have at least 5 db – 10 db amplification (not shown here), even on the lowest volume setting, so all children had at least some amplification during the testing. furthermore, inclusion of the children with hearing impairment’s classmates who participated was based on self-report and no audiologic testing. this means that the children in the control group could also have some degree of hl without knowing it. if so, the dtt scores for the control group could be somewhat higher. finally, the acoustical differences in the testing environments make it difficult to compare data collected in the different classrooms. however, the acoustical properties of the classrooms were measured and are reported. discussion in this study, speech recognition using a dtt in swahili was used to measure the effect of different interventions that can be implemented in schools to improve the learning situation for children with hearing impairment. the three interventions studied are presented here. firstly, the simplest measure, where the student is moved closer to the teacher, can improve speech perception and therefore can lead to a better learning environment. all the children improved their results with this intervention, and six out of eight got a score above 90%. this will, however, only work if the teacher is aware of the challenge and tries to be close to the student(s) with hearing impairment during teaching. a challenge is that teachers often have to move around in the classroom and therefore cannot maintain a close distance all the time. another challenge is that it can be difficult for the students with hearing impairment to hear the other students who are not sitting close to them; this can lead to exclusion from dialogues. secondly, the use of a simple personal amplifier has clear limitations in classroom settings with bad room acoustics. as a result of the long rts, the amplifier will only work when the user is within the critical distance to the speaker. this distance was calculated to be from approximately 0.91 m – 1.23 m, which is very short. as we found that moving closer to the speaker will improve the situation by itself, it is not obvious that a personal amplifier will give any additional benefit. this is something that should be studied further. thirdly, the rm-system gave the best speech recognition among the interventions that was tested. that an rm-system outperforms personal amplifiers, hearing aids and cochlear implants in gaining increased speech perception in classroom situations has been demonstrated previously (zanin & rance 2016); this indicates that rm-systems also can provide benefit to children with mild to moderate hl. because of the wireless transmission of the speech, the student will hear the teacher regardless of where they are seated in the classroom. the teacher must, however, use the microphone for this system to work, and both the teacher and the user must also have the competence to use the device. rekkedal (2014) has looked at factors affecting the use of technical interventions and found that the teachers’ attitude towards microphones was most important. she also found that the teachers in her study felt they needed more knowledge about hearing impairment. this means that training is essential and knowledge of the significant benefit this can give must be clearly stated to promote usage. there are also some challenges associated with rm-systems. as the signal is provided to the user using a microphone, other students in the class also must have microphones to be heard. this can be solved by having one or more handheld microphones that can be passed around the classroom to the talker, but this further complicates both the use and the technical competence needed. even if some of the rm-systems also have microphones in the device that can be switched on if needed (for instance when other students are talking), the long rt in the classroom will also affect these. this is the same challenge as with the personal amplifier mentioned here. common for all the interventions is that education must be given to ensure that they are implemented in the best way. this information must contain both general information about the challenges associated with hl and also guidance on how the people around (i.e. teachers, other students, guardians) can accommodate it. for the technical devices, training of both the user and the technical staff providing service of the devices is also necessary. it must also be observed that only mild to moderate hearing impairments were looked at in this study and that the hl was quite different among the children. the speech recognition results also had little correlation with the severity of the hl. a reason could be that some of the children had other disabilities, such as cognitive impairment, but this was neither screened for nor investigated any further. two of the eight participants did not achieve the same benefit as the others. these two children were those who scored the lowest on all tests, indicating that they had greater challenges with speech perception than the others. even if this could be related to other impairments, these children came from school b, where the control group also scored lower than the other schools. this could indicate that the room was more challenging than the other rooms. the study did not look at personal amplifier use in the position close to the speaker, and therefore it is not possible to say if this could further improve the listening situation for the children. it does, however, show that if personal amplifiers are introduced in a school setting, the teachers must be given knowledge on how to best utilise these devices. if the children were provided with such a device and seated in the back or at the side of the classroom, these results indicate that there is a chance that the students will hear better without the equipment. mealings (2016) reviewed national and international standards and recommendations of classroom acoustic conditions and found recommended noise levels ranging from 25 dba to 50 dba, recommended rts ranging from 0.3 s to 0.9 s and sti values ranging 0.6–0.75 for developing children. for children with hearing impairments and language delays, the recommended values were noise levels lower than 20 dba – 35 dba and rts shorter than 0.3 s – 0.7 s. the room acoustical measurements in this study showed that none of the classrooms met recommendations from international standard. two of the classrooms had rts above 1.3 s and clearly show a major challenge for learning in these schools. this affects all students, not only those with hearing impairment, but those who also have hearing challenges will suffer more. an observation made from the control group results is that school b did worse than school a on the dtt, even though the acoustical conditions were measured to be better in school b. if this observation is true, it might be a challenge for acoustical treatments of classrooms and something that should be studied further. to further elucidate the potential in these low-cost interventions, more research is needed on the effect. student performance after different interventions should be studied and cost–benefit analysis should be performed to appraise them. conclusion this study, although small in sample size, showed that personal amplification with directive microphones gave little to no effect in assisting the children with hearing impairment. one of the main reasons is the challenging acoustical conditions in the classrooms that compromise the sound quality in such equipment. the best speech perception was achieved using an rm-system that circumvents the bad acoustical conditions by using microphones close to the speaker and transmitting the sound wirelessly to the user. interestingly, the results also indicate that the children with hearing impairment could get good benefit simply by moving closer to the teacher. this is a low-cost alternative but will require proper training of both the child with hearing impairment, the teacher, the other students and the guardians in order to work. the effect of such intervention must, however, be studied further. acknowledgements the authors would like to give special thanks to prof. hamisi m. malebo from the national commission for unesco of the united republic of tanzania for assisting in the process of getting the ethical approval. they also want to thank mr lucian e. segesela, the principal at patandi teachers’ college for special needs education, tanzania, in addition to his teachers and staff. tov glesnes is also acknowledged for his contribution to the bachelor’s thesis that laid the groundwork for this article and prof. vinay swarnalatha nagaraj from the norwegian university of science and technology (ntnu) for his supervision. finally, they also like to express their gratitude to the teachers and the children at the three schools involved in the study. without their assistance and participation this study could not have been carried out. competing interests the authors have declared that no competing interest exists. authors’ contributions t.v.t. was responsible for the conceptualisation of the study and writing of the manuscript. b.g. was responsible for the conceptualisation of the study, data collection and writing of the manuscript. i.ø. was responsible for the conceptualisation of the study data collection and writing of the manuscript. t.ø. was responsible for the conceptualisation of the study and writing of the manuscript. c.m. was the principal investigator in tanzania and responsible for the conceptualisation of the study and planning of the data collection and review of the manuscript. i.m. was the project coordinator at patandi teachers’ college and responsible for planning and implementing the data collection and review of the manuscript. j.ø. was the study supervisor and responsible for the writing of the manuscript. all authors provided critical feedback and helped to shape the research, analysis and manuscript. funding information the fieldwork in this study was carried out in collaboration with sintef’s project ‘i hear you’. ‘i hear you’ is a tablet-based application that is still under development in a project funded by the research council of norway (grant no. 267527 nrc) as part of the vision 2030 programme. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views expressed in this article are solely the authors’ and not an official position of the institutions associated or the research council of norway. references astolfi, a. & pellerey, f., 2008, ‘subjective 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https://doi.org/10.1080/14992027.2016.1225991 appendix 1: results from the pure tine audiometry for all test subjects. abstract introduction research design and methodology findings of the study discussion way-forward: a step towards intervention conclusion acknowledgements references footnote about the author(s) sibonokuhle ndlovu ali mazrui centre for higher education studies, university of johannesburg, johannesburg, south africa citation ndlovu, s., 2019, ‘access into professional degrees by students with disabilities in south african higher learning: a decolonial perspective’, african journal of disability 8(0), a514. https://doi.org/10.4102/ajod.v8i0.514 original research access into professional degrees by students with disabilities in south african higher learning: a decolonial perspective sibonokuhle ndlovu received: 07 mar. 2018; accepted: 15 feb. 2019; published: 10 june 2019 copyright: © 2019. the author. licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: former historically disadvantaged social groups such as women, black people and those with disabilities are expected to participate in the skilled labour force that south africa has pledged to produce for the 21st century. however, in the south african context, research widely neglects access of those into professional degrees in higher learning. there is a need for such an exploration because people with disabilities have been found to be excluded from professional employment. objectives: using decolonial theory, this empirical study sought to explore obstacles confronted by students with disabilities at entry in a specific institution of higher learning in south africa. the aim was to unveil the invisible obstacles and their causes for an effective intervention. method: a qualitative research design was adopted and in-depth interviews were conducted to collect data from the participants. this particular dimension of research method was chosen to enable dialogue and development of partnership, which is important for collecting rich data. results: while policies of inclusion still enabled access of all students into professional degrees, there were however inequitable practices, alienation and inequality that excluded students with disabilities at entry. obstacles seen at surface level were not the real ones; the real ones were the deep-seated issues of coloniality. conclusion: if the underlying causes of obstacles at entry are not visible to students with disabilities themselves and the responsible stakeholders, students might continue to be oppressed on entry into the professional degrees and in higher learning generally. obstacles can only be dismantled when there is an awareness about their deep-seated causes. keywords: students with disabilities; higher learning; access; decolonial theory; specific impairments; professional degrees. introduction access of students with disabilities into higher learning has shown a general increase globally. the united kingdom, for example, has well-developed policies of inclusion (fotim project report 2011) (rb, 2a), which enhance access to higher education for students with disabilities, through established support, services, processes and structures (chataika 2007). in turkey, the limitations are imposed by poor resources (arsian-ari & inan 2010). for example, students with disabilities in particular do not have access to assistive and internet technologies (ozel, inan & sezer 2004). in canada, it is the structural barriers that are limiting, namely, while efforts are made for physical structures to be accessible, those with disabilities receive less attention and remain excluded (mullin & preyde 2013). the united states of america has good policies, but poor implementation presents barriers for the inclusion of students with disabilities in the curriculum (mosia & phasha 2017). in the african context, all students are expected to have access to higher learning, and their voices to be heard because of the philosophy of ubuntu (shanyanana & waghid 2016) where everyone is ‘supposedly’ included. however, it has been revealed in a number of studies that in developing countries in africa, access to higher learning is still limited. in zimbabwe (chataika 2007), namibia (hugo 2012) and lesotho (mosia & phasha 2017) although students with disabilities access higher learning, they are excluded from curricula because of the lack of adequate funding, and structural and attitudinal barriers. in the south african context, studies by carrim and wangenge-ouma (2012), the council of higher education (2013) and the information shared at the second national higher education summit (2015) reveal an increased access into higher education of diverse students. ‘diverse’ in this context refers to different social groups of students, defined in terms of ethnicity, religion, race, gender, sexual orientation and disability, in both historically disadvantaged and advantaged institutions of higher education. howell (2005) remarks that in basic education (i.e. in schools) the government has made remarkable improvements to enable diverse learners to gain access. however, although there has been increased access into higher education, students with disabilities still confront obstacles in accessing higher learning generally, and professional degrees specifically. the problems of access for students with disabilities have generally been found to start from schooling. this fact is mirrored through very few people with disabilities being engaged in professional employment (ramutloa 2010), and obstacles at entry to professional degrees could be the reason why people with disabilities are typically found in non-professional employment (swartz & schneider 2006). in this article, decolonial theory is used as a theoretical lens to explain the underlying causes of the obstacles confronted by students with disabilities when entering professional degrees. the articles seeks to make the invisible visible so that when obstacles are revealed from this perspective, along with their causes, an effective intervention aimed at the underlying causes can be planned. it further seeks to contribute to the issues of persons with disabilities also being afforded the opportunity to access professional degrees in higher education and, consequently, participate in the professional labour force that south africa seeks to produce for the global market of the 21st century (carrim & wangenge-ouma 2012). as professional employment and participation in the professional labour force start from entry into the professional degrees, this article first outlines what is required to enter professional degrees in the south african higher learning context. it then expounds extensively on decolonial theory for its potential to illuminate that which might be invisible and to bring it to the fore (dastile & ndlovu-gatsheni 2013). the main themes perceived by the participants as obstacles to enter the specific professional degrees are then reported, which are specifically access and alienation, equality and inequality, intersectionality and the tension of impairment and disability. decolonial theory is then applied to discuss the specific themes, in the process making visible what could be actual obstacles and their underlying causes. access to professional degrees in south africa entry requirements for professional degrees vary from one degree programme to another. the variance is in terms of academic marks obtained at school, compulsory subject requirements and/or admission procedures. the requirements may also vary from one institution to another. access to professional degrees for all students, including those with disabilities, is backed by policy. broadly speaking, the present democratic south africa has a constitution (republic of south africa [rsa] 1996) and legislation, such as the equality and prevention of unfair discrimination act (rsa 2000) and the employment equity act no. 55 of 1998 (rsa 1998), that prevent unfair discrimination and promote equity and equal opportunity and representation in terms of employment. it also has inclusive education policies, like the education white paper 6: special needs education (ewp6) (department of education [doe] 2001) and the education white paper 3: a programme for the transformation on higher education (doe 1997). these policies were developed to enable all students to access basic education and higher learning in general, and to enter professional degrees and, consequently, professional employment. with such policies, i argue that without delving deep into the empirical exploration, it can be assumed that access into professional degrees might be without obstacles for all students, including those with disabilities. this article focuses on entry into three specific professional degrees: law, medicine and education. these degrees were chosen because the department of higher education and training reported an imbalance between the higher learning output of specific professions and national skills. because of limited entry into specific professional degree programmes, there has been a shortage of these professional skills in the country (department of higher education and training [dhet] 2011). it is important therefore to focus on the particular degree programmes to understand whether diverse students, including those with disabilities, have access into them at entry. at the institution where the research was conducted, medicine and law degrees require higher marks in matriculation than an education degree. medicine specifically requires science subjects as compulsory for entry. the institution of higher learning does not deny students with disabilities entry into law, medicine, education or any other professional degree. students with disabilities are merely advised on the difficulties they might experience in taking a particular programme, looking at the demand of the programme versus the impairment of the student and its severity. for example, severe communication disorders and dyslexia might hinder entry into law. while all students confront obstacles at entry, there are additional ones specifically faced by students with disabilities because their needs are unique (ndlovu & walton 2016). theoretical perspective several theories provide a lens which might have informed the focus of the current study. for example, scholars in the disability field often employ the framework provided by critical disability studies (cds) to understand issues of disability and oppression of people with disabilities (meekosha & shuttleworth 2009; tremain 2005). furthermore, cds includes a number of theoretical positions (spagnuolo 2016), and it draws together works produced in different studies to better understand disability issues across the world (shildrick 2012). it constructively critiques and problematises specific disability issues so as to generate new ways of understanding. one of the aims of cds is to improve the living conditions of all diverse persons, including those with disabilities who are undervalued and discriminated (meekosha & shuttleworth 2009). the proponents of cds comprise a range of post-conventionalists, post-structuralists and post-colonialists, who include, among others, meekosha and shuttleworth (2009), shildrick (2012) and goodley (2014). they critique, among other issues, ableism and disablism and seek to create a new understanding of disability in light of intraand/or intersectionality, suppressed voices and acknowledgement of difference. most striking is the work of post-colonialists like grech (2015) and soldatic (2015) who sought to shift the understanding of disability from a eurocentric global west perspective to include voices from the south. understanding of disability from this perspective could result in decolonisation of disability. the social model of disability as a theoretical framework proposes that disability is a social construct. gallagher, connor and ferri (2014) argue that the social model does not emphasise biological determinism, which reinforces that disability does not result from impairments but from a social construct. this results in some quadrants of society remaining out of reach for some people. when considering the importance of cds and social model of disability as theories for a disability study, they could have been the ones informing this study. however, i chose to apply decolonial theory because it not only explains oppression but goes further to expose the structure of coloniality, which is an invisible underlying cause of the oppression of the ‘other’. the article is premised on the specific concepts of coloniality of power and coloniality of being. the proponents of decolonial theory, among others, are grosfougel (2007, 2011), quijano (2000, 2007), mignolo (2000, 2007, 2011), maldonado-torres (2007) and prominent scholars such as ndlovu-gatsheni (2001, 2013). among other things, these scholars have the common agenda of exposing the ills of coloniality and eurocentrism. mignolo (2007:56) describes the decolonial theory as ‘an-other thought that seeks to inaugurate, “an-other logic”, “an-other language” and “an-other thinking” that has the potential to liberate’. in essence, decolonial theory is ‘an-another’ theory that comes from a different angle from cds. it aims to bring awareness, liberation and agency for the oppressed social groups, such as people with disabilities, who are ‘othered’. decolonial theory does not specifically explain disability issues, rather it explains issues of oppression of the ‘other’ which also include people with disabilities. barton (2001) argues that we urgently need a political analysis and a theory of political action which is inspired by transformative change. furthermore, rose (2004) explains that decolonial theory does not only oppose coloniality, but it also proposes ways of overcoming oppression and prejudice. thus, decolonial theory befits barton’s (2001) and rose’s (2004) descriptions of the social theory required in disability to change the oppression of persons with disabilities. it is not only radical against oppression but also offers a method of overcoming it. as many social theories have failed to bring change for persons with disabilities in terms of oppression (oliver 1996), i therefore bring the decolonial perspective to understand obstacles for students with disabilities, in entry into professional degrees, and the underlying invisible causes by exposing the hidden structure of coloniality. issues of coloniality decolonial theory seeks to create an understanding of oppression through understanding coloniality and its effects. it is an important premise when focus is on africa in general, and in south africa specifically, because humanity within this context has experienced flagrant colonialism and consequent oppression by colonisers. this particular theory helps to understand that although people in africa live as ex-colonised people, they still live and breathe coloniality as global modern subjects (maldonado-torres 2007; ndlovu-gatsheni 2013). quijano (2000:342) expresses a sentiment that ‘coloniality operates on every level, every arena and dimension of everyday human social existence’. according to maldonado-torres (2007), coloniality refers to: … long standing patterns of power that emerged as a result of colonialism and have survived it. it defines culture, labour, intersubjectivity, relations and knowledge production. it is maintained in books, in criteria for academic performance, in cultural patterns, in common sense, in self-images of people, in aspiration of self and in so many aspects of our modern experience. in a way, modern subjects breathe coloniality all the time and every day. (p. 243) as quijano (2000) argues, it needs not to be overemphasised that some individuals in the context of africa still live under coloniality. although democracy has been achieved, some people are still subjected to coloniality, particularly in the south african context. former disadvantaged social groups, like people with disabilities, have experienced gross oppression through the system of apartheid. this is why the present government wants to empower former disadvantaged social groups to access higher learning in general and professional degrees in particular. as such, it is therefore important to use decolonial theory to understand why students with disabilities are still hindered from entry into professional degrees. there are specific concepts of decolonial theory, which are important in terms of understanding access in this article. the theory has four constructs: coloniality of power, being, knowledge and nature (dastile & ndlovu-gatsheni 2013). all the four constructs are important because they unveil how the structure of coloniality oppresses the other within a specific criterion. however, for the purposes of focus and scope of this particular article, the last two have been excluded and only the first two have been used to underpin this article. the first two specifically illuminate obstacles at entry for students with disabilities and the invisible underlying causes (rb, 3). coloniality of power and zones of location coloniality of power proposes that despite freedom from colonialism in african countries, there are still networks of relations of exploitation, domination, control of labour, nature and its productive resources, knowledge and authority by the dominant powers (quijano 2007). the existing colonial matrix of power affects all dimensions of social existence, ranging from sexuality, authority, politics, economy, subjectivity, language and race (quijano 2000). this is why the south continues to be dominated by western influences, and why oppression still continues for other social groups, despite democracy and proposed transformation. further to coloniality of power is the issue of social location of individuals within coloniality. it is explained in terms of zones, in which humanity is placed through what santos (2007) terms the western ‘abyssal thinking’. as santos explains, this is a way of thinking by the west, which considers the social reality as divided into two realms. on ‘this side of the line’ is the zone of being, which is the metropolitan zone occupied by the west. the zone on the ‘other side of the line’ is the colonial zone, referred to as the zone of non-being, occupied by the ‘other’ (santos 2007:45–46). the abyssal line is invisible but divides the two zones into differential power relations. grosfougel (2011) explains that what is found in the two zones in terms of human race are two groups. in the zone of being, there are superior beings who are the ‘i’. the oppressors are found there. in the zone of non-being, there is the inferior being who is the ‘other’, the oppressed social group who exists as inferior beings. the humanity of the ‘other’ is denied. knowledge and theories produced in the zone of being are claimed to be legitimate and universal. dominant universities are located in this zone. in the zone of non-being, no credible and legitimate knowledge is produced; theories from this zone are discredited, including critical thinkers, critical theorists and critical scholars. in the zone of being, equality and freedom are considered rights, while conflicts are mediated through treaties, negotiation and law. in the zone of non-being, conflict and human relations are mediated and resolved through violence (ndlovu-gatsheni 2013). grosfougel (2011) clarifies that the zones are the west, the zone of being, and the south, the zone of non-being. the two zones should not however be understood in neatly formed, permanent categories. a zone of being can be created in the south through western influence and education in general, and it produces the dominant society. such people are socially located in the zone of non-being but epistemically located with the west. grosfougel (2011) explains that they reproduce coloniality through confining themselves to a particular ethnic group in the zone of non-being, while they think and act like the oppressor in the zone of being. i argue that persons with disabilities could also be influenced by such positionality and location. by virtue of people with disabilities having the potential to oppress, they might be understood as oppressors rather than the oppressed. the concept of zoning, its complexities and dynamics are thus important to help not to over-generalise the obstacles for students with disabilities at entry. all students with disabilities might confront obstacles, but with diverse experiences of such obstacles because of the students’ epistemic location in terms of zones. coloniality of being the concept of coloniality of being derives from oppression of the way of being. it results from the categorisation of humanity into different social groups which are then labelled (dastile & ndlovu-gatsheni 2013; grosfougel 2007, 2011; maldonado-torres 2007; mignolo 2007; ndlovu-gatsheni 2001, 2013; quijano 2000, 2007). this categorisation is based on ideas of ‘normalcy’ and a binary view of abnormality and normality. this oppressive way in which humanity is categorised has resulted in the social construction of disability because persons with disabilities deviate from the standard of normalcy used in the process (reddy 2011). they have been categorised and labelled as ‘the disabled’ because their bodies and minds deviate from the ‘normal’ body. the normative body is being used as a yardstick by the dominant powers responsible for social ordering of society, to name and discriminate people. the concept of ‘coloniality of being’ therefore brings an understanding to the issue of disability as a socially constructed phenomenon. it is in this way that although decolonial theory does not specifically explain the issues of disability, it brings to the fore the invisible underlying causes of oppression of persons who are ‘othered’. the theory of coloniality of being therefore situates the construction of disability in a wider theoretical account of othering. in the process of categorisation and producing normative standards, difference, multiplicity and diversity are denied (ndlovu-gatsheni 2012). the global population is thus ordered and differentiated by the dominant society into bipolar binaries of ‘inferior and superior, irrational and rational, primitive, civilised, traditional and modern’ (quijano 2000:343). thus, disability is a social construct produced through coloniality of being. however, the decolonial scholars (grosfougel 2007, 2011; maldonado-torres 2007; mignolo 2007; quijano 2000, 2007) argue that all people are human. differences in bodies, minds, race, gender, ethnicity and sexual orientation are all diversity in human beings, which should be celebrated and not denied. from the argument of decolonial scholars, it implies that ‘the disabled’ do not exist, neither do ‘the normal’. however, that the concept of disability has been constructed by society, and that people with disabilities socially exist, cannot be ignored. people with disabilities find themselves in the lower hierarchy of categorisation and susceptible to oppression; hence, there is the need to examine the obstacles they confront in terms of entering specific professional degrees in higher learning in south africa. decolonial theory would therefore not only promote the understanding of specific obstacles to students with disabilities at entry into higher learning, but also the obscured underlying causes of such obstacles. the theory is thus offered to address the social problem of exclusion or denial of access to students with disabilities. problem and rationale of the study the problem that was studied is that students with disabilities encounter obstacles to access. this fact remains despite the agenda of transformation and inclusion of diverse students in education in higher learning in a democratic south africa. as such, prospective students with disabilities have been, and still continue to be, excluded from entering professional degree programmes. the obstacles that are seen at surface level may not be the real obstacles, or the only obstacles to entry for students with disabilities. this article proposes that the invisible, deep-seated results of coloniality can be viewed as contributory to the obstacles at entry for students with disabilities. the rationale of the study was, thus, to use decolonial theory to illuminate and expose the actual obstacles, which can consequently influence an effective intervention. without such an exposure, oppression could be perpetuated (rb, 4). research design and methodology a qualitative research design was used in the study. this particular research paradigm was chosen to enable dialogue and development of partnership with research participants (mertens 2009), which is important for collecting rich data. qualitative research is philosophically hinged on the methodological assumptions of the transformative paradigm (guba & lincoln 1994), which allows the participants’ version of reality to emerge (mertens 2010). the social contexts of participants, as defined by their schooling backgrounds, gender, race, socio-economic class, disability category and age, were taken into account, as these could influence how participants constructed reality. the voice of students with disabilities was privileged (hosking 2008) to counteract the differential access to power in which the powerful’s version of reality is privileged (mertens 2007). privileging the voices of students with disabilities also allowed for the silenced voices to emerge. participants were given an opportunity to state how they wanted entry to be improved. the opportunity to express their opinions in terms of improvement was important because their voices could be listened to, and heard, by stakeholders with authority when this research will be disseminated. this will be important because students with disabilities have the lived experiences of disability and its reality. the ethical and cultural values of the participants were respected (mertens 2012), and to develop mutual trust and cooperation expected between the two parties, the researcher spent time in socialising with the participants before conducting the interviews. two meetings were scheduled with each student before data collection commenced. one meeting was conducted at each student’s residence and the second at another agreed location. during these preliminary meetings, informal conversations were struck with participants to allow for a rapport to develop. participants twelve students with disabilities and seven disability unit (du) staff members (n = 19) participated in the study. eight students were in their final year of study at undergraduate level and four were postgraduate students. three students had hearing impairments, four had vision loss and five had physical disabilities and were using wheelchairs. sampling of participants was purposive. the particular students were selected because they had a lived experience of entering specific professional degrees at the institution. there were three members of the du who were not disabled and four members with disabilities. the du staff members were selected for their involvement and experiences with entry into specific programmes for students with disabilities. a letter of invitation was sent to du members and those who volunteered to participate in the study responded. students with disabilities were recruited through snowballing technique. access to the first student was gained through a du member who introduced the researcher to her. the researcher explained the study to the student and consent for participation was obtained. the student then referred the researcher to other students who could be interested to participate and provided their names. the researcher then introduced herself and the study to each one of them. participants of different races, gender, ages and schooling background were included in the sample, resulting in maximum variation being attained. data collection qualitative data were collected through in-depth individual interviews by the researcher. the interviews were unstructured, which gubrium and holstein (2002) argue are more flexibility, and were conducted on a one to one basis. although frith (2000) argues that participants talk more freely on sensitive issues in focus group interviews, for students with various disabilities to be interviewed in a group was viewed less likely to yield rich data. they would, as kitzinger (1994) observed, question each other and try to persuade each other to one’s point of view. a semi-structured interview guide, developed from the research questions of the study, was used. the interviews were conducted at one formerly advantaged institution of higher education, with a du anecdotally regarded as one of the best units in the country associated with the institution. interviews were conducted during 2015. five students with disabilities and four du staff members were first language english speakers, and seven students and three staff members were second language english speakers. all participants were, however, interviewed in english because it was a common language understood by the interviewer and all participants. there were no communication barriers between the interviewer and participants with hearing impairments because all of them used oral communication. each interview was conducted at a place and time convenient to the individual participant. interview data were audio-recorded with the permission of the participants and transcribed and the verbatim transcripts were returned to participants for verification. data were analysed thematically (byrne 2001; creswell 2008; leedy 1997), and at different levels, by the researcher. at each level, similar responses were aggregated and collapsed into themes. similar views and contradicting views were grouped together, and trends were analysed. the first stage of analysis involved the researcher analysing data for minor themes. they were grouped together and abstracted to major themes (braun & clarke 2006; miles & huberman 1994). access and alienation, intersectionality, equality and inequality, and tensions of disability and impairment were abstracted as major themes. cross-checking of data, which ndhlovu (2014) refers to as ‘constant comparative analysis’, was extensively used during the study. it helped to identify contradictions and consistencies in the data. responses from students with disabilities were constantly compared with those of the du staff members. as students with disabilities are not a homogeneous social group, their responses from the context of different schooling backgrounds, economic class, race, gender and disability categories were also compared. it was important for understanding intersectionality among students with disabilities as a factor in shaping their experience of gaining entry into the institution (rb, 5). peer reviews and member checks with colleagues in the field were also used to validate the analyses. triangulation (carter et al. 2014) was used to validate data from different sources. data from the du staff members were triangulated against that from students with disabilities. data from students with disabilities from different schooling backgrounds were also triangulated. reflexivity as the researcher had more control of the study and was the one who gathered and analysed the data, there could have been researcher biases. i identify strongly with students with disabilities because of my personal experiences of exclusion. thus, i had a vested emotional interest in the study because of shared experience of segregation and being discriminated. there could be a possibility of my being more attuned to experiences of exclusion than to those of inclusion in the process of collecting and analysing the data. i, however, made an effort to be neutral by recording all interviews using a digital recorder. use of mechanical methods reduces researcher bias (breakwell, hammond & fife-shaw 1995) because recorded data can be transcribed verbatim. recording the interviews reduced the insider effects. however, subjectivity is also acknowledged as a researcher effect. perfect neutrality and objectivity are simply not possible, given the human element of such a study. knowledge production cannot be totally value-free, as it cannot be independent of the researcher producing it (berger 2015). thus, there could be researcher effects in the results of the study as subjectivity cannot be totally avoided. ethical considerations ethical considerations were strictly followed to limit the vulnerability of students with disabilities, as much as possible. permission to conduct the study was obtained from the institution of higher learning, which was also the site of research, and ethics clearance was granted by the ethics committee (clearance number 2013ce106d). informed consent was sought from all the participants and the nature, purpose and aim of the study were explained to them. participants were made aware that their participation was voluntary and that they had the right to withdraw from the study should they feel unwilling to continue. findings of the study contradictory views were expressed by the participants on ease of entry of students into the specific professional degrees at the institution. the contradictions were revealed between students with disabilities having access to entry into professional degrees and those having experiences of alienation. experiences of both equality and inequality were shared, and the influence of intersectionality became apparent as a theme in the findings. the final theme depicts the tension that was found between the presence of impairment and the experience of disability, as these impacted the entry of students with disabilities into professional degrees. access and alienation at entry students with disabilities had contradictory views on their entry into specific professional degrees. all 12 students with disabilities across the three programmes agreed with du members that academic merit was the primary criterion for access. they stated that all students had to meet the entry requirements in order to enter. they also shared the same view as du staff members that policy afforded them an opportunity equal to that of students without disabilities. one of them said: ‘i did not experience any problems myself to enter into education because i had the entry requirements they needed. i did not struggle to get in. i had all the subjects and the points and so it was easy for me to enter.’ (student of education: 4, female, 19 years old) although students with disabilities had initially said that access was possible with the required marks and subjects, an experience of alienation was reflected in their reports about the challenges in their school careers, which they feel were not encountered by students without disabilities, and culminated in barriers or challenges to entry at the level of higher learning. eight out of the 12 students stated that special schools limited their likelihood of gaining entry to the higher degree they wanted to pursue because some schools did not offer subjects specifically required for medicine. those who were studying medicine and law stated that had they not gone to mainstream schools, they would not have entered those programmes. one of them said: ‘special schools and disadvantaged schools have no prospect of bringing disabled students who qualify to do medicine at this university. so the barrier can be the school that you come from.’ (student of medicine: 1, male, 26 years old) contrary to their initial statements that they also had equal opportunity to enter a professional degree, students with disabilities stated that they needed special concessions so that they also had equal opportunities at entry. one of them stated: ‘i want them to make special consideration in entry requirements and admissions because you can’t pretend you don’t have a disability.’ (student of education: 5, male, 23 years old) disability unit members said that the specific professional degrees were accessible to students with disabilities at entry because the policy did not allow discrimination on the grounds of disability. they stated that if students with disabilities provided prerequisite entry qualifications, they had the same opportunity of entry as that of any other student. one staff member commented: ‘since i have been here for 16 years to be precise, i have never had an experience of a student who is discriminated against because he has a disability.’ (disability unit member: 4, male, 46 years old) while they had said access was equal, du members also agreed that entry into professional degrees, and medicine specifically, was difficult for students with disabilities at the institution, as captured by the following statement: ‘from my experience, students with disabilities are the ones who struggle very much to get into the professional degrees at this institution. the subjects they have do not fit the entry requirements for professional degrees as medicine.’ (disability unit member: 2, male, 24 years old) another member of the du presented a perception of alienation at entry: ‘students with disabilities have problems entering professional degrees because they might not be doing the required subjects in their matric. even teachers have low expectation that those students can do challenging subjects.’ (disability unit staff member: 3, female, 29years) intersectionality because of issues of class and privilege, there were students with disabilities who did not encounter any obstacles in entering professional programmes of their choice at the institution. despite their disabilities, they attended mainstream schools and obtained the prerequisite marks and subjects, which enabled their entry into the specific programme they wanted. a medical student stated: ‘i had always wanted to be a doctor and i went to a normal school. i studied maths, biology and chemistry. i did this subject integration because medicine is the only degree i ever wanted.’ (student of medicine: 1, male, 26 years old) intersectionality also manifested in different special schools attended by students with disabilities. the participants stated that it was specifically those from special schools for the deaf who did not meet the entry requirements in terms of marks and subjects for specific professional programmes. they said that other special schools offered the same subjects as mainstream schools, and hence afforded opportunity for students with disabilities to enter their degree programme of choice, just like any other student. three out of the 12 students said they had not encountered any obstacle in entering professional programmes of their choice, although they had attended special schools. one of them stated: ‘you find that in many special schools, they are not doing maths. at our school, which is a special school, the one i matriculated from, i did every subject that is offered in the mainstream.’ (student of education: 6, female, 21 years old) the above statements show that experiences of students with disabilities cannot be generalised as there are factors that intersect with the presence of a disability and influence different students’ experiences differently. thus, we find some students with disabilities enter the programme of their choice, despite their disabilities, because of high socio-economic class, privileged position and the type of special schools the students attended,. equality and inequality at entry students with disabilities reported that they were afforded equal access into the professional degrees for which they qualified. this was shown in the below statement:‘ the university values your personal ability in terms of intellectual self. just the necessary points, i did not have any problems because i had the points they wanted.’ (student of education: 1, female, 23 years old) the perceptions of students with disabilities were that there was equality because they could also meet the requirements like all other students, as expressed by one participant: ‘i was not treated like a disabled student. i met the academic requirements so that i could get into law. it would be unfair for me to enter law because i am on wheelchair. there was no special consideration for me to come in.’ (student of law: 3, female, 26 years old) the above statement suggests that the student thinks there is equality in the same entry requirements because he or she is also capable. while it could be seen that way, students with disabilities encounter the obstacle of inequality because they presumably have disadvantages stemming from their school careers, which other students do not have. students with disabilities from some special schools, for example, are already denied entry into medicine and law specifically, because of high entry points and the requisite subjects of sciences. this is inequality because the playground is uneven for students with disabilities. the inequality is invisible but it prevents access at the point of entry. an observation was made in this regard: ‘you find that in many special schools they don’t do maths and science subjects. definitely you would not enter medicine. you end up doing the degree you don’t want.’ (student of law: 2, male, 20 years old) this statement confirms an issue of inequality that is invisible because students with disabilities are limited in terms of entry to the professional degrees of medicine. thus, while at surface level, all students seem included and there is equality in terms of entry requirements and policy, students with disabilities are not fully included. from the du staff members’ perspective, there seemed to be equal access to the specific degrees because entry requirements were the same for all students, those with and without disabilities. there was no special consideration for students with disabilities. the tension of impairment and disability the perception at the institution was that specific impairments limit entry into particular programmes. for example, the perception of the du staff and students with disabilities was that an individual with visual and hearing impairments could not enter the programme of medicine. a student with a hearing impairment in medicine stated: ‘how am i supposed to use a stethoscope, how am i supposed to interview patients, it kept ringing in my mind, a doctor has to hear, hear, hear, i can’t be a doctor.’ (student of medicine: 2, male, 26 years old) a student with a visual impairment in the programme also stated: ‘i cannot operate on a patient with this vision. i cannot do procedures that really need good sight.’ (student of medicine: 1, male, 24 years old) the student had started his medical degree at a university in latin america, and he stated that had he started at the institution under study, he might not have entered medicine. the utterances of the two students with hearing and vision loss suggest that they were convinced that their impairments limited entry into the programme. furthermore, dyslexia and communication disorders were viewed as impairments that hindered entry into an education degree. they stated that a student with communication, reading and writing limitations might not be able to teach those same skills to learners in schools and might not be able to write reports, letters to parents and speak clearly to learners and parents. students with disabilities also perceived a speech disorder as an obstacle to entry into law because the profession required someone who was articulate and fluent to represent clients well. they also viewed physical disability as limiting at entry because of the dress code that was required in law. one of them said: ‘law is appearance driven (rb, 6), you have to dress in a certain manner, you can’t come with a leg brace over your jeans and you can’t afford not to wear suits and stuff.’ (student of law: 3, male, 21 years old) discussion this study has found that although efforts are being made for students with disabilities to enter higher education, there are inequitable structures and practices that limit their entry to professional degrees at the institution under study. when illuminated by decolonial theory, the opportunity of access that students with disabilities have through policy can be explained in terms of efforts of transformation and inclusion. dastile and ndlovu-gatsheni (2013) argue that the importation of human rights and democracy from the west has resulted in a shift towards transformation and inclusion in the neo-colonial present. as south africa has attained independence and democracy, it could be argued that the country is making an effort through inclusive legislation and policies to transform its higher learning institutions to include diverse students. to redress the inequalities of the past, the institution abides by the policy of non-discrimination and inclusion (equality and prevention of unfair discrimination act 2000), and education white paper 6: special needs education (ewp6) (doe 2001). thus, non-discrimination and equal access in terms of academic merit seem to promote equal access to professional degrees for all students, including those with disabilities. evidence from this study reflects that students with disabilities think that they are afforded equal access into the professional degrees that they qualify for. dastile and ndlovu-gatsheni (2013), however, argue that inclusion of all is illusionary at present. alienation of students with disabilities who come from special schools can be understood in light of location in different zones, as explained by santos (2007) and grosfougel (2011). special schools are located in the zone of non-being, while the institution of higher learning, by virtue of being previously advantaged, is in the zone of being. thus, students with disabilities are alienated by the invisible ‘abyssal line’ (santos 2007), which distinguishes special schools, designed for the other, from a dominant university (an institution on the zone of being and understood as elite). it is nevertheless expected that students with disabilities achieve the same entry requirements as students without disabilities to enter medicine at the institution, while their schooling background is different from students without disabilities. ndlovu (2015) argues that coloniality thrives on alienating the other. dominant universities are also used as power structures to sustain coloniality and to oppress the other (dastile & ndlovu-gatsheni 2013). the alienation of students with disabilities could thus be explained in light of coloniality sustaining itself. i argue that, while at surface levels the same entry level requirements seem to provide equal opportunity to all students, at deeper unseen levels the invisible underlying cause of alienation of students with disabilities is the zone of non-being, in which they are located. although howell (2005, 2006) argues that there has been improvement in schooling to promote access to higher learning by students with disabilities, i argue that entry into the specific professional programme at the particular institution is still limited by virtue of alienation caused by limitations in the special schooling system. as revealed in the data, some special schools do not offer subjects that are prerequisites to enter specific professional degrees in higher learning. from the american context, trow (2000) argues that alienation is experienced because of incomplete transformation from systems of dominant universities to systems of mass higher education that provide universal access. i argue that access into higher learning by diverse students has indeed increased in south africa; however, students with disabilities in particular are still limited in entering specific professional degrees. intersectionality had a different influence on the entry of students with disabilities into the three programmes. when the influence of intersectionality in obstacles confronted by students at entry is illuminated by decolonial theory, it could be understood in terms of fluidity of zones of location (grosfougel 2011). not all students with disabilities are rigidly confined to the zone of non-being. there are some students who by virtue of socio-economic class, race and impairment category and its level of severity are socially located in the zone of being. such students may not be hindered in terms of access into specific professional degrees at the institution, and may be privileged rather than oppressed. as mertens (2009) states, intersectionality can also privilege and does not always yield double oppression. access and alienation are therefore experienced differently by students with different disabilities and thus it should not be generalised to all students with disabilities that they are alienated at entry. issues of equality and inequality are revealed at the point of entry, but inequality seems to be invisible to the participants. when decolonial theory is used as a lens to illuminate the invisible inequality at entry, it could be explained in terms of coloniality of power. as already highlighted, the dominant ethos used at the universities sustain the oppressive structure of coloniality, and to continue to oppress ‘the other’ (grosfougel 2011). powerful programmes and powerful knowledge are being offered to the powerful. at surface level, the exclusion to enter medicine by students with disabilities from special schools and disadvantaged mainstream schools could be seen as resulting from not having the required subjects and marks. however, beneath the surface level, it can be seen as a way of keeping the powerless from powerful knowledge. those who have access to powerful knowledge are the powerful, and not the oppressed in the zone of non-being. dominant universities have the obligation to maintain this status quo. while the same entry requirements and admission procedures for all students may seemingly afford equal opportunity to all, indeed it does not. it is an issue of maintaining power, that power remains with the powerful and the oppressed remain powerless. it is therefore important that the issues of obstacles to the access of students with disabilities into professional degrees are analysed deeply. another obstacle at entry for students with disabilities is the tension of impairment and disabilities. the two are taken together as a social construct by critical disability scholars, such as tremain (2005), while they are actually different. decolonial theory helps us understand the tension between impairment and disability in light of the organisation of society using ‘normalcy’ as the standard (quijano 2000). physical structures, practices and the general order of society are organised for ‘normal’ people, hence excluding those with different categories of impairment. for example, the perception of students with disabilities is that speech disorder is an obstacle to entry into law because the profession requires someone who is articulate and fluent to represent clients well. by virtue of being excluded by inaccessible structures, some students with disabilities think their entry is limited because of their impairments, not realising that it is society that excludes them. for example, the dress code which excludes those with physical disabilities is conceived as an issue of impairment by a law student. maldonado-torres (2007) explains that there are oppressed social groups who are and have been living under oppressive powers and have accepted them as realities of modernity. the participants’ view that specific impairment hinders entry could be seen in light of internalised oppression (hall 1990; mason 1990; reeves 2014; thomas 2007). i argue that there is a reproduction of the understanding that impairments result in disability and, consequently, disability is seen as inability. students with hearing and visual impairments studying medicine perceived that fulfilling the requirements of the profession would be impossible for them because of their impairments. while at surface level it makes sense, a question could be asked as follows: who said doctors should be hearing or seeing people because humanity is diverse, plural and different? (ndlovu-gatsheni 2001; quijano 2000). it must be understood that impairment and disability are not the same. from the social model of disability perspective, it is society that disables and limits, and not impairments. the tension between impairment and disability was evident across the three programmes when students described how exclusionary the designs and demands of the specific programme were for them. however, they continued to emphasise their own specific impairments as the restrictors to entry in particular programmes. crow (1996) in agreement with shakespeare (2010) argues that when an impairment, rather than a disabling condition, is emphasised as limitation, it is an obstacle in itself. the focus of the responsible authorities will shift from transforming an exclusive context of learning to transforming the students to suit the context. oliver (1990) views this perspective as individually oriented. i concur with shakespeare and oliver by arguing that it is not the impairments of the students but the structure of the specific professions and the designs of the programmes that pose obstacles that limit students with particular impairments to enter specific programmes. the view of specific impairments as a hindrance to entry into specific professional degrees could be seen as a reproduction of individualised understanding of self (devlin & potheir 2006) that has been internalised. students with disabilities could therefore unconsciously exclude themselves from entering the specific professional degrees at the institution by pre-judging themselves before they are judged by others. the tension of impairment and disability is reflected in the students because they appear to conceptualise disability and impairment as the same. way-forward: a step towards intervention the real obstacles, which include the effects of coloniality as categorisation and hierarchisation of people, denial of difference and use of normative standards for all diversity, are much broader and deeper than what could be seen by ‘a naked eye!’ specific interventions are therefore suggested to improve entry of students with disabilities into professional degrees in higher learning broadly. with specific reference to botswana, habulezi and phasha (2012) suggest adaptations to teaching approaches as an intervention at school level to counter the alienation and inequality confronted by students with disabilities. in the south african context, i suggest levelling the playing field at the point of entry for people with disabilities should rather entail reasonable accommodation measures, which are already described in policy but not yet implemented adequately and effectively. the implementation of equity of access stipulated in the policy of transformation in higher learning (doe 1997) is one measure that could increase the access of students with disabilities at entry (rb, 7). there is also a need to improve special schools. it has been confirmed from the data that students with disabilities from such schools are denied access to higher education in general and professional degrees specifically. mckinney and swartz (2016) revealed that during the apartheid era, special schools were also divided according to race, with white schools receiving better education. it suggests that special schools differ in the way students with disabilities are educated. an attempt has been made to improve formerly black special schools by the democratic government through the inclusive education policy. it is recommended, as mckinney and swartz (2016) extrapolated, that the principles of inclusive education (ewp6, 2001) should be effectively implemented for the improvement of special schools that are disadvantaged (ra, 1). there is also a need to work together because the war of coloniality is far too great to be won single-handedly by a single social group. oliver and barnes (2012: 176) also argue: oppression of disabled people will only end when the oppression of all is overcome and that will happen with major structural, economic, political and cultural transformation as well as resistance. (p. 176) oliver and barnes’s proposition of a transformation, in which students with disabilities could access professional degrees, is broad and might take very long to accomplish, taking into account the resistance that could also be encountered in the process. i suggest that dismantling coloniality should start at the institution, that there is a total institutional transformation in terms of structures, culture and practices, in which all diverse students are included at entry. it could be an intervention which could see even students with disabilities having a wider access to the three programmes specifically, and any professional degree of choice broadly, in the south african higher education sector. furthermore, intersectionality should not be glossed over because obstacles at entry into professional degrees are not the same for all students with disabilities. thus, when stakeholders at institutions of higher learning and students with disabilities become aware and conscious of coloniality, they can begin to reveal its ills and spearhead resistance and transformation (rb, 8).1 conclusion if the invisible underlying causes of obstacles at entry are not visible to students with disabilities themselves and those involved in access issues, they might continue to be excluded from entering the specific professional degrees at the institution. the inequitable practices and structures can only be dismantled when there is awareness and consciousness that the deep-seated cause of the obstacles confronted at entry has to do with coloniality. consequently, ‘treating the underlying cause’ would be the coming together of all oppressed social groups and non-disabled persons who are also fighting oppression to engage coloniality. intervention at national level (rb, 9) would be a drive to a total overhaul of the tertiary education system and complete institutional transformation to include all diverse students to access professional degrees, learn and graduate. graduates with disabilities could thus also enter professional employment and contribute to professional skills for a global, diverse market as expected in a democratic country (rb, 10). acknowledgements the author acknowledges ali mazrui centre for higher education studies and the faculty of education at the university of johannesburg for their support in conducting this study. competing interests the author has declared that no competing interests exist for this article. authors’ contributions i declare that i am the sole author of this research article. funding this research is funded through the university research council and the faculty of education at the university of johannesburg. references arsian-ari, i. & inan, f.a., 2010, ‘assistive technologies for students with disabilities: a survey of access and use in turkish universities’, the turkish online journal of educational technology 9(2), 40–45. barton, l., 2001, disability, politics and the struggle for change, david fulton, london. 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studies and medical sociology, palgrave macmillan, basingstoke. tremain, s., 2005, foucault and the government of disability, the university of michigan press, ann arbor, mi. trow, m., 2000, ‘from mass higher education to universal access: the american advantage’, minerva 37, 303–328. https://doi.org/10.1023/a:1004708520977 footnote 1. equity of access is addressed in a number of clauses in policy. it states that the goal of transformation in higher education is to give fair chances of access to all students who have the potential. furthermore, it states that there should be eradication of all forms of unfair discrimination (doe 1997). it implies therefore that all diverse students including those with disabilities cannot be denied access into higher education generally. if there could be an effective implementation of this clause, students with disabilities could have an equal opportunity of access into professional degrees in higher education. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) robert ngarambe department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda jean baptiste sagahutu department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda assuman nuhu department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda david k. tumusiime department of physiotherapy, faculty of health sciences, university of rwanda, kigali, rwanda department of rehabilitation, the regional centre of excellence in biomedical engineering and ehealth, university of rwanda, kigali, rwanda citation ngarambe, r., sagahutu, j.b., nuhu, a. & tumusiime, d.k., 2022, ‘the status and use of prosthetic devices by persons with lower limb amputation in rwanda’, african journal of disability 11(0), a1081. https://doi.org/10.4102/ajod.v11i0.1081 original research the status and use of prosthetic devices by persons with lower limb amputation in rwanda robert ngarambe, jean baptiste sagahutu, assuman nuhu, david k. tumusiime received: 21 may 2022; accepted: 12 sept. 2022; published: 09 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: amputation is one of the leading causes of disabilities because of reduced mobility. without assistive devices specifically prostheses, the quality of life of persons with lower limb amputation (plla) further deteriorates. therefore, prostheses are fundamental to improving their quality of life. objectives: this study aimed to establish the number of plla with or without prosthesis and to determine their socio-economic profile in rwanda. method: a descriptive, cross-sectional study was conducted in all sectors of rwanda. as a result of coronavirus disease 2019 movement restrictions, data collection was carried out through telephone calls with participants to complete the questionnaires. descriptive, inferential statistics and chi-square test were performed to analyse data using statistical package for social science (spss) 21.0. results: of the 3026 participants identified countrywide, 68.8% were males and 60.3% of them did not have any prosthesis (p = 0.003). the majority (62.4%) of those who had prosthetic devices needed repair of their prostheses while 14.8% of participants reported that their prosthetic devices were completely broken and/or damaged (p = 0.604). among the participants, 63.7% had no source of income and 66.7% had dependents (p ≤ 0.001). conclusion: the majority of the plla in rwanda did not have prosthetic devices and even those with prostheses did not fully function and thus required repair. therefore, it adversely affects their livelihood. contribution: the government should collaborate with stakeholders working with persons with disabilities and implement mechanisms and/or strategies to make prosthetic devices accessible and affordable. keywords: admitted; experiences; family members; relative; state patient; qualitative. introduction loss of a body limb leads to reduced functioning that restricts the individual’s participation in the community (van twillert et al. 2014). amputation of a part or whole limb causes permanent disability leading to changes in functioning in life (knežević et al. 2015). it is estimated, globally, that approximately 73.5% of limb amputations are lower limbs. the major causes of amputation are traumatic injuries and vascular disorders (asano et al. 2008). in high-income countries, vascular disorders are the main cause of amputations, while in low-income countries, traumatic injuries are the major cause of amputation (sinha, van den heuvel & arokiasamy 2011). diabetes and vascular disorders are increasingly becoming a health concern in low-income countries, hence leading to amputation (agu & ojiaku 2016; ahmad et al. 2019; sangam et al. 2015). in rwanda, the number of persons with physical disabilities, including those with lower limb amputation (lla) is estimated at about 5% of the general population, of which 1.6% had lla according to the national census of 2012 (national institute of statistics of rwanda 2014). according to the disability categorisation process of 2016 findings, approximately 88% of persons with lower limb amputation (plla) needed prostheses (kidd & kabare 2019). however, the provision of prostheses to plla seems to be costly because of the high cost of production and procurement of raw materials, as well as additional costs of transport to rehabilitation centres (matter & eide 2018; rhoda & eide 2009). lower limb amputees without prostheses as mobility assistive devices have increasingly had an impact on their lives, such as the decline of physical functioning and quality of life at the individual, family and society levels (ng et al. 2020). without lower limb prostheses, plla are often excluded and locked into persistent poverty and isolation (anderson, kaiser gladwin & mayo 2016). however, if plla are given prosthetic devices and rehabilitated back to full functional capacity to carry out daily activities and participate actively and productively in community life (smith et al. 2018a), this may reduce dependence on both community and their families, hence improving quality of life. the aim of this study was to establish the number of plla with or without mobility assistive devices or prosthesis and to determine their socio-economic profile in rwanda. research methods and design a cross-sectional and descriptive study design was conducted in rwanda. the accumulative census on plla was carried out in the 416 sectors across the country. participants were contacted through the local authorities at the cell level, to request them to participate in the survey. regarding the inclusion criterion for participating in this survey any person with lla with or without a prosthesis at any age was eligible. prior to data collection, research assistants were trained by the researcher on the data collection instrument, the aim of the study, the data collection procedure, as well as ethical considerations. data from the participants were collected by research assistants through telephone interviews to complete the questionnaire. the questionnaire was an adapted section of the trinity amputation and prosthetic experiences scale (tapes-r), and another section from the world health organization disability assessment schedule (whodas-02-demographic and background information) used in a similar setting in rwanda (scorza et al. 2013). both are standardised instruments and their validity and reliability were tested. world health organization disability assessment schedule 2.0: cronbach’s α coefficient was 0.96 and pearson’s correlation coefficient was 0.98 (üstün et al. 2010). trinity amputation and prosthetic experiences scale-r: test–retest reliability ranged from 0.66 to 0.87 (gallagher & maclachlan 2000). these questionnaires were adapted, in this study, to suit the rwandan context. the questionnaires were translated from english to kinyarwanda by two language experts and back to english by two other language experts to address the cultural and linguistic equivalence. then, the questionnaire was sent to experts in the field of rehabilitation for their opinion on the quality of translation, clarity and suitability for the rwandan participants. the questionnaire was composed of 18 items divided into three sections (demographic, amputation profile and socio-economic sections). the national council of persons with disabilities, in rwanda, has a formal structure from the national to the community level. therefore, the researcher contacted the in charge of persons with disabilities at the district level, who then consulted with the coordinator of persons with disabilities in the community to get cell phone numbers for all plla or their caregivers. after getting the contact numbers, the participants were first approached on their cell phones by research assistants who explained to them in detail the purpose of the study and requested their voluntary participation. then, data were collected through phone calls from all those who verbally consented to complete the questionnaire. data were analysed using the statistical package for social science (spss) version 21.0. descriptive statistics were performed to summarise the demographic data. chi-square tests were performed to determine the association between amputation profiles and other variables such as demographic data, the status of a prosthesis and socio-economic sections (source of income, social-economic category and dependents). the level of significance was set at p < 0.05. ethical considerations the study was approved for ethical clearance by the institution review board (irb) of the university of rwanda, college of medicine and health sciences; n°369/cmhsirb/2020. results socio-demographic characteristics of participants of the 3362 persons with lla, 3026 persons participated in this study, which was equivalent to 1.6% among persons with disabilities in rwanda (national institute of statistics of rwanda 2014). the participants’ age ranged from 3 to 101 years, with a mean age of 49.1 years (standard deviation [sd] = 18.5). among the participants, males accounted for 68.8% (n = 2081) and 31.2% (n = 945) females (p = 0.003). among the participants, 39.7% (n = 1202) had prosthetic devices and 60.3% (n = 1824) did not have prosthetic devices. as highlighted in table 1, a statistically significant association was found between gender and possession of prosthetic devices among persons with lla (p = 0.003). table 1: socio-demographic characteristics of participants. regarding participants’ level of education, those with primary level were 48.7%; (n = 1473), of which 19.5% (n = 589) reported that they had prosthetic devices. the education level with the least participants was university level, 2.4% (n = 73) from which 2%; (n = 60) had prosthetic devices (p ≤ 0.001). there was a statistically significant association between the level of education and possession of prosthetic devices (p ≤ 0.001). findings on participants’ marital status revealed that 53% (n = 1603) were married of which 22.3% (n = 675) had prosthetic devices and the divorced were 3.4% (n = 103) of which 1% had prosthetic devices. there was a statistically significant association between marital status and possession of prosthetic devices (p ≤ 0.001). the majority (81.5%; n = 2467) of plla lived in a rural area, of which 30.7% (n = 929) had prosthetic devices. participants in urban areas 9.0% (n = 273) had prosthetic devices. there was a statistically significant association between possession of a prosthetic device and area of residence (p ≤ 0.001). among the participants, 61.7% (n = 1868) were in category 1 of the social-economic status, of which 20.1% (n = 607) had prosthetic devices, 5.6% (n = 169) of the participants were in category 3 of which 4.0% (n = 122) had prosthetic devices. a statistically significant association was found between the socio-economic status (ubudehe categories) and possession of prosthetic devices (p ≤ 0.001) (table 1). the ubudehe category is a rwanda government classification method of the population according to socio-economic status. the categories are divided into four parts: category 1 is for the very poor, category 2 is for the relatively poor, category 3 is for the relatively wealthy and category 4 is for the wealthy population. socio-economic characteristics of participants with or without prosthetic devices furthermore, 46.4% (n = 1405) of participants were unemployed, of whom 14.7% (n = 445) had prosthetic devices and 4.8% (n = 145) of the participants had paid work, of whom 3.3% (n = 99) had prosthetic devices (table 2). a statistically significant association was found between employment and possession of prosthetic devices (p ≤ 0.001). the study shows that 47.1% (n = 1426) of the participants had below the knee amputation; among these participants 22% (n = 667) had prosthetic devices while above the knee amputations were 45.7% (n = 1383) of whom 16.6% (n = 503) had prosthetic devices. there is a statistically significant association between the level of amputation and possession of prosthetic devices. among participants with lla, 62.9% (n = 1903) had dependents and among them, 26.9% (n = 814) had prosthetic devices. a total of 67.2% (n = 2032) of the participants did not have financial assistance; however, 29% (n = 879) of them had prosthetic devices. of the 32.8% (n = 994) with financial assistance, only 10.7% had prosthetic devices. a statistically significant association was also found between access to financial assistance and possession of prosthetic devices (p ≤ 0.001). the majority (62.8%; n = 1899) of participants had no source of income and only 3.3% (n = 101) of the participants had a regular source of income. possession of prosthesis and a source of income were significantly associated (p ≤ 0.001). table 2: socio-economic characteristics of participants with or without prosthetic devices. status of the prosthetic device the functional status of participants’ prosthetic devices (table 3) was highlighted as follows: 20.1% (n = 242) of them were in a good condition; among them, those with the transtibial 11.1% (n = 134) were in the majority. the study also found that 62.4% (n = 705) of the prosthetic devices needed repair and that 14.8% (n = 178) of prosthetic devices were completely damaged. there was no statistically significant association between the type of prosthesis and the status of the prosthesis (p = 0.604). a total of 3.5% (n = 162) of the prosthetic devices that were in good condition had been used for more than 12 months. furthermore, 58.7% (n = 706) of those in need of repair had been also used for more than 12 months. a statistically significant association between the duration of using a prosthesis and the status of the prosthesis was found (p ≤ 0.001). a total of 41.8% (n = 502) of participants with dependents had the most prosthetic devices that needed repair, although there was no statistically significant association between having dependents and the status of the prosthesis (p = 0.857). table 3: status of prosthetic devices of participants. the study further revealed that 39.7% (n = 477) of participants with no source of income had prosthetic devices that needed repair, while participants with an irregular source of income with prosthetic devices that needed repair were 20.5% (n = 247). a total of 35.4% (n = 425) and 22.2% (n = 267) of the prosthetic devices that needed repair were from ubudehe category 1 and 2, respectively. category 1 had the most broken and/or damaged prosthetic devices; however, there was no statistically significant association between socio-economic status and the status of the prosthesis (p = 0.921). discussion the purpose of this study was to establish the number of plla possessing or not prosthesis and/or mobility assistive devices and to determine their socio-economic profile in rwanda. studies have revealed that in low-income countries, the majority of plla have no mobility assistive devices such as prosthetic devices (de witte et al. 2018). this was in line with findings from this study, which showed that 60.3% of plla did not have lower limb prosthetic devices. almost similar results were also reported by the national council of persons with disability in rwanda, which indicated that 88% of persons with amputation needed prosthetic devices (kidd & kabare 2019). the findings in this study further highlighted that among the persons with prosthetic devices 62.4% of the participants’ prosthetic devices were damaged, and therefore needed repair while 14.8% were completely damaged and needed replacement. these findings concur with the study carried out by amosun, mutimura and frantz (2005) in rwanda and by magnusson and ahlstrom (2017) in malawi and sierra leone. this further demonstrates the increasing gap of service delivery for prosthetic devices, which may however also be worsened by the low socio-economic levels of plla, because they cannot afford the cost of repairing their devices. the low socio-economic levels of plla and the inability to afford the cost of repairing their prosthetic devices were highlighted in this study for rwandans as well as in other low-income countries as indicated by desmond et al. (2018). in rwanda, repairs of the prosthesis are carried out at a cost although they are less expensive compared with manufacturing, and the process of repair goes through the same system because the devices are repaired at the same health facility where they are made and sometimes health facilities are not near their homes; therefore, this increases the cost and time. this therefore emphasises that there is gap in acquiring prosthetic devices among person with lla in rwanda. a lack of mobility assistive devices or prosthesis has been highlighted elsewhere in low-income countries such as a study carried out in nepal where prospects of independent lifestyle are minimum (järnhammer et al. 2018; wyss et al. 2015). the world health organization (who) is therefore advocating for countries to provide assistive mobility devices such as prosthesis to all those in need, and it goes further to request all countries to include assistive mobility devices on their list of essential products (smith et al. 2018). while it is still a challenge, efforts have been made to put policies in place by both the government of rwanda and other stakeholders such as charity and non-government organisations working with persons with disabilities in rwanda to include prosthetic services on the insurance schemes, the government pays 90% of the cost of the assistive devices within government health facilities and the beneficially pays 10%. however, challenges in accessing prosthetic services are also linked to poverty among plla because the majority cannot afford the 10% cost of the prosthesis as well as the transport to these health facilities as highlighted in this study where the majority did not have any source of income or any financial assistance. even though plla have other types of assistive devices such as crutches, it is thus obvious that without prosthetic devices, a person with lla will have mobility challenges, hence leading to low socio-economic status highlighted by a number of studies (lin & wu 2014; smith et al. 2018; von kaeppler et al. 2021). the findings of this study found that males were in the majority with lla (68.8%) compared with females. this study agrees with a systematic review by godlwana et al. that there are high incidences of lla among males than females (godlwana, nadasan & puckree 2008). a systematic review carried out by davie-smith et al. highlighted that high rates of amputations in high-income countries may be because of risk factors such as smoking and severe peripheral arterial disease (pad) among males than in females (davie-smith et al. 2017) compared with traumatic injuries in low-income countries, for example, in a study carried out in pakistan (ahmad et al. 2019). more so, this may be attributed to the type of daily activities performed by men compared with women. males in low income countries, rwanda inclusive, are mostly engaged in hard labour such as farming, mining, cycling motorist as highlighted in the study carried out in rwanda on road traffic accidents were male constituted 78% of the total accidents (ahmad et al. 2019; twagirayezu et al. 2008). rwanda is a low-income country with low literacy levels, and similar to many other low-income countries, the situation is the same for plla (kidd & kabare 2019). the majority of participants in this study either never attended school or attained primary-level education. however, the study conducted in tanzania indicated different results from the current findings in rwanda where the majority of participants had attained a high school level of education but still their level of education was lower compared with those in the developed countries (von kaeppler et al. 2021). the minimal formal education in low income countries affects plla in accessing employment the most because of limited employment skills, therefore they work as hard labourers. this study confirms that the majority of the participants were unemployed with no source of income to sustain their families. consequently, without a source of income, plla were more likely to become poorer than other people in their communities, this is in agreement with the study carried out in rwanda where persons with disability have less source of income (kiregu et al. 2016; sinha et al. 2011). however, this may also be because of a number of other factors other than the education level only. factors, such as a lack of prosthesis, and many others can be explored more deeply in future studies in rwanda. although the majority of participants reported that they were married and had families to take care of, most of them did not have prosthetic devices in addition to being unemployed. therefore, this puts more burden on their well-being as well as that of their families, hence lowering their socio-economic status (kiregu et al. 2016). the lack of prosthetic devices coupled with a lack of education is a limitation to the acquisition of the right skills for gainful employment. findings from this study further show that 81.5% of participants live in rural areas. this is different from the study performed in india where the majority of the amputees were living in towns and metropolitans (sinha et al. 2011). the likely reason is that when individuals are amputated they find it costly to live in urban areas where the cost of living is higher compared with the rural areas, and therefore prefer to live in the rural areas where the cost of living is low (kidd & kabare 2019; wekesa et al. 2013). generally, the living conditions in rural areas are lower than urban areas in rwanda however there are no basic services and infrastructure (ayalon & tesch-römer 2018). furthermore, this study highlighted that 47.1% of participants had below the knee amputation. the results concur with two other studies, one carried out in rwanda and the other in malaysia, where there were more below the knee amputations than above the knee amputations and other types of lower amputations (kidd & kabare 2019; razak et al. 2016). however, these findings were different from the study carried out in nigeria where the majority were above the knee amputation (agu & ojiaku 2016). studies have shown that when persons with below the knee amputations are given prosthetic devices, they get a quick recovery and re-integration into the community, therefore have high chances of improving their quality of life as compared to the ones with above the knee amputation (knežević et al. 2015; matos, naves & de araujo 2020). however, a study performed by ng et al. in brunei emphasised that below knee prosthesis guarantees physical functioning than the emotional well-being of plla (ng et al. 2020). furthermore, from the results, 62.8% of participants had no source of income yet had families and dependents to take care of. the findings concur with the study carried out in malaysia where the majority of participants were in low-income classes (razak et al. 2016). however, the number of participants who had prostheses and a source of income were slightly higher than the participants with no source of income. this may be the reason why there was a statistically significant association between possession of a prosthesis and a source of income. the results complement other studies that have highlighted that possession of prostheses contributed to a better quality of life for plla than those without prosthesis (razak et al. 2016). the majority of participants’ lack of a source of income in this study was the reason for most of them to be in categories 1 and 2 of ‘ubudehe’ social classification. this shows that plla are among the poorest. although the majority did not have any source of income, a small number of 32.8% of participants were given financial assistance by the government for their daily upkeep but still the assistance was not enough to meet their needs. the universal health insurances cover 90% of the cost of the devices. yet, most of the plla are not able to afford the remaining 10% of the cost of the prosthetic device because they have no source of income and no government assistance, hence making their living conditions worse and their socio-economic status poorer. this research has highlighted that for plla to improve their quality of life, they must have mobility assistive devices such as prosthesis (magnusson & ahlstrom 2017). generally, prosthetic devices are more expensive in rwanda, but the government of rwanda has included them on the list of medical equipment that is covered by all health insurances in rwanda. however, not everybody can afford to pay for the individual contribution. therefore, it is argued that stakeholders such as faith-based organisations and charity non-government organisations (ngos) should work hand in hand with the government to provide affordable prosthetic devices to plla (maclachlan et al. 2018). implications the study’s findings have highlighted the gap in accessibility and affordability of prosthetic devices to plla in rwanda as the majority of participants in the study did not have them. regarding the socio-economic status of plla, it was highlighted that the majority of them were among the poorest, in category 1 as classified by the ‘ubudehe’ classification in rwanda. the findings may provide evidence to the government and stakeholders that may contribute to better planning and decision making towards the improvement of the welfare of plla. the study’s findings may inform policymakers and other stakeholders to formulate policies that may improve the accessibility and affordability of prosthetic devices for plla. this will be a basis for the improvement of their mobility and addressing their socio-economic challenges, hence influencing their socio-economic status. the study’s findings may also be a basis for further research on the quality of life for plla and re-integration into the community. limitation the limitations of this study were the following: the coronavirus disease 2019 pandemic led to travel restrictions in the country and limited funding during data collection. the coronavirus disease 2019 covid-19 standard operating procedures (sops) limited personal contacts with the participants as well as paperwork like the use of questionnaires. conclusion based on the findings from this study, it is evident that the majority of plla in rwanda do not have prosthetic devices, or even those who have them, are damaged and in need of repair to remain functional. as the majority of plla do not have a source of income and are poor, hence worsening their socio-economic status, it is therefore difficult to afford prosthetic devices. therefore, the government’s collaboration with other stakeholders such as charity and faith-based ngos working with persons with disabilities should put up mechanisms and/or strategies to make the devices accessible and affordable to plla. acknowledgements the authors acknowledge all people who supported and contributed to this study, especially the participants and the research assistants from the respective local administrative sectors. competing interests the authors declare that there are no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions r.n. was involved in conceptualisation of the study, methods, data collection, analysis and manuscript writing. d.k.t. supported the conceptualisation of the study, methods and manuscript writing. j.b.s. was responsible for study, methods, manuscript writing and editing. n.a. was involved in study methods, analysis and manuscript writing. funding information the study was funded by the east african regional centre of excellence in biomedical engineering and e-health (cebe), at the university of rwanda as a phd scholarship and this article is a requirement to the phd. data availability data supporting the study findings are available on request from the corresponding author, r.n. the data are not publicly 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67–70. wyss, d., lindsay, s., cleghorn, w. & andrysek, j., 2015, ‘priorities in lower limb prosthetic service delivery based on an international survey of prosthetists in lowand high-income countries’, prosthetics and orthotics international 39(2), 102–111. https://doi.org/10.1177/0309364613513824 abstract introduction background methodology ethical considerations findings discussion conclusion acknowledgements references about the author(s) micah m. simpamba department of physiotherapy, university of the western cape, south africa patricia m. struthers school of public health, university of the western cape, south africa margaret m. mweshi physiotherapy department, university of zambia, south africa citation simpamba, m.m., struthers, p.m., & mweshi, m.m., 2016, ‘access to health care for children with neural tube defects: experiences of mothers in zambia’, african journal of disability 5(1), a267. http://dx.doi.org/10.4102/ajod.v5i1.267 research project no.: 11/5/14 original research access to health care for children with neural tube defects: experiences of mothers in zambia micah m. simpamba, patricia m. struthers, margaret m. mweshi received: 26 feb. 2016; accepted: 13 july 2016; published: 02 dec. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract introduction: in zambia, all children born with neural tube defects requiring surgery need to be referred to a tertiary level hospital in lusaka, the capital city, where the specialists are based. the aim of this study was to explore the experiences of mothers accessing health care who had recently given birth to a child with a neural tube defect. methods and analysis: in-depth interviews were conducted with a purposively selected sample of 20 mothers at the tertiary level hospital. the interviews were audiotaped, transcribed verbatim and translated. content analysis was used to identify codes, which were later collapsed into categories and themes. findings: five themes emerged: access to health care, access to transport, access to information, concerns about family and support needs. discussion: barriers to access to health care included geographical barriers and barriers linked to availability. geographical barriers were related to distance between home and the health centre, and referral between health facilities. barriers to availability included the lack of specialist health workers at various levels, and insufficient hospital vehicles to transport mothers and children to the tertiary level hospital. the main barrier to affordability was the cost of transport, which was alleviated by either family or government support. acceptability of the health services was affected by a lack of information, incorrect advice, the attitude of health workers and the beliefs of the family. conclusion: access to health care by mothers of children with neural tube defects in zambia is affected by geographical accessibility, availability, affordability and acceptability. the supply-side barriers and demand-side barriers require different interventions to address them. this suggests that health policy is needed which ensures access to surgery and follow-up care. introduction global estimates of birth defects indicate that 7.9 million children are born with birth defects each year and of these 90% are born in lowand middle-income countries (christianson, howson & modell 2006). neural tube defects (ntds) are the second most common group of serious birth defects, following cardiac abnormalities, which result in infant mortality and severe disability (rofail et al. 2012). they are a group of congenital defects of the central nervous system, resulting from failure of the neural tube to close during the first few weeks of foetal development (padmanabhan 2006). ntds are classified according to the anatomical structures affected: the cranial structures, anencephaly (major part of the brain is absent) or encephalocele (protrusion out of the skull of sac-like meninges and brain tissue), or the spinal structures (spina bifida), meningocele (sac protrudes out of the spine) or myelomeningocele (sac contains spinal cord and nerves) (bussuk & kibar 2009). the defect is classified as closed if skin covers the defect, and it is classified as open if skin does not cover the defect. children with ntds, especially spina bifida, may survive with lifelong neuromuscular, orthopaedic and sometimes cognitive and language disabilities (wallingford et al. 2013). background the prevalence of ntds varies between and within countries and may depend on geographical location, genetics or race (lumley et al. 2001; mitchell 2005). the worldwide incidence of ntds is estimated to range between 1.0 and 10.0 per 1000 births (au, ashley-koch & northrup 2010). a systematic literature review on ntds (1990–2014) by zaganjor et al. (2016) found that the reported incidence of ntds varied greatly between and within regions. the regional incidence per 10 000 births was 11.7 in africa, 21.9 in the eastern mediterranean, 9 in europe, 11.5 in the americas, 15.8 in south-east asia and 6.9 in the western pacific. in hospital-based retrospective studies, an incidence of 7.5 per 1000 births was reported in algeria (2004–2006) (houcher et al. 2008), 3.5/1000 births in sudan (2003–2004) (elsheikh & ibrahim 2009) and 2.2/1000 births in nigeria (2011–2013) (nnadi & singh 2016). a retrospective study at a paediatric neurosurgical centre in kenya (2005–2010) reported the incidence of spina bifida and encephalocele as 3.3/10 000 live births (githuku et al. 2014). there is a paucity of data on the prevalence of ntds in most african countries, with information only from hospital-based studies, thus not reflecting the actual prevalence (rabiu & adeleye 2013). in most high-income countries, there has been a decline in the prevalence of ntds arising from advancement in prenatal diagnosis, serum alpha-fetoprotein tests, termination of affected pregnancies and folic acid supplementation amongst women of childbearing age (fletcher & brei 2010). despite overwhelming evidence from high-income countries on prevention of ntds, most countries in sub-saharan africa do not have policies on the prevention of ntds (adeleye, dairo & olowookere 2010; de paul djientcheu et al. 2008; lumley et al. 2001). south africa is the only country in africa which has reported the implementation of food fortification and the subsequent reduction in the prevalence of ntds after fortification of maize meal, the staple food (sayed et al. 2008). besides making advances in the prevention of ntds, high-income countries have also made advances in the management of ntds and their complications, leading to more children surviving into adulthood (bowman & mclone 2010). in high-income countries, in utero surgical repair for the unborn child with myelomeningocele reduces the incidence of hydrocephalus, and results in significant improvements in neurological function (copp, stanier & greene 2013). when a child is born with an open ntd, surgical closure is recommended within the first 24 h (lazareff 2011). however, in lowand middle-income countries, specialised surgery is only available in the biggest cities. this is a challenge for parents of children with ntds who are usually from lower socio-economic background and living in rural areas (adeleye et al. 2010; farmer & kim 2008). late presentation for surgery leads to high mortality rates and severe impairments for those who survive (lazareff 2011; miles 2006). there are many barriers to surgical care in lowand middle-income countries. a systematic review by grimes et al. (2011) identified the following barriers: the distance to hospital, poor roads, a lack of suitable transport, the lack of local resources and expertise at health facilities; direct and indirect costs related to surgical care; and fear of undergoing surgery and anaesthesia. a study in nepal reported the limited availability of services, financial difficulties, and fear or distrust of service providers as barriers to surgical care (nagarajan et al. 2015). in cameroon, de paul djientcheu et al. (2008) found poverty and cultural beliefs of family members to be barriers to accessing health care. the barriers faced by people in lowand middle-income countries in gaining access to health care can be explained using the four dimensions of the access to care framework, namely, availability, accessibility, affordability and acceptability (jacobs et al. 2012; penchansky & thomas 1981; peters et al. 2008; ricketts & goldsmith 2005). the definition of ‘access’ used in this study is the one adopted by jacobs et al. (2012 289), from peters et al. (2008), which describes access to health services as ‘the timely use of service according to need’. these authors describe the four dimensions of access to care as availability (the existence of health care personnel and resources), accessibility (the geographical relationship between the health facility and the location of the user), affordability (the costs involved) and acceptability (attitudes of users towards providers and vice versa). statement of the problem in zambia, all children born with ntds and in need of surgery have to be transported to lusaka for surgical management because specialist surgery is only available at the university teaching hospital (uth) and beit cure hospital, both of which are in lusaka, the capital city of zambia. there has been no study carried out in zambia to explore the experiences of mothers of children with ntds in relation to accessing health care services. aim the aim of this study was to explore the challenges faced by mothers of children with ntds in accessing specialised health care services at uth. methodology study site uth is the biggest hospital in zambia, situated approximately 4 km east of the centre of lusaka. this hospital receives referrals from all the nine provinces in the country and, as the country’s specialist centre, also acts as the principal training institution for all health and allied disciplines. this study was conducted in the paediatric surgical ward at uth, namely, ward d01. population and sampling the study population consisted of mothers of children with ntds who were admitted to ward d01 between september and december 2011 (the period of data collection). the study sample included 20 mothers who were selected using purposive sampling so that mothers from all of the nine provinces could be represented. sample size was based on data saturation, which was considered reached if interviews with two mothers from the same province yielded similar codes during analysis. however, if different codes emerged from the data, a third mother from that province was interviewed. using these criteria, two mothers were interviewed from each of five provinces, three mothers from each of three provinces and one mother from one of the provinces, constituting a total of 20 mothers. data collection in-depth, face-to-face interviews were conducted in a private room in the ward, using a semi-structured interview guide (ryan, coughlan & cronin 2009). the interview guide had two broad open-ended questions. the first question was asked to the mother to narrate, in the form of a story, what she experienced from the birth of the baby through to the baby’s admission to uth. the second question was related to access to services following discharge. the interviews were conducted in four local zambian languages, namely, chi bemba, chi tonga, chi nyanja and si lozi, and one interview was conducted in english. over the period of data collection, new admissions of children with ntds were identified through the ward’s admission register. data analysis the audiotaped data from the interviews were transcribed verbatim. the interviews conducted in local zambian languages were transcribed and translated into english by a professional translator. the analysis approach was thematic analysis as described by green and thorogood (2009). using a deductive approach, codes were identified, which were subsequently grouped into categories (graneheim & lundman 2004) from which themes were generated (bradley, curry & devers 2007; graneheim & lundman 2004). trustworthiness member checking was undertaken to strengthen credibility, by returning to the mothers whose children were still in the ward after the initial analysis of their interviews. they could verify whether the interpretations, and subsequent codes and themes, accurately represented their views (green & thorogood 2009). prolonged engagement with participants was possible because the mothers were present in the ward for lengthy periods. the detailed descriptions of the context, participant characteristics, data collection methods and process of analysis are provided to support transferability, facilitating the repetition of the study in similar context (bhattacherjee 2012; morrow 2005; zhang & wildemuth 2009). ethical considerations ethical clearance was obtained through written permission from the senate research ethics committee of the university of the western cape (research project no: 11/5/11) and the university of zambia research ethics committee (research permission no: 013-07-11). written permission to conduct the study at uth was granted by the hospital management and the nursing officer in charge of ward d01. the purpose of the study was explained to the mothers, using an information sheet translated into their home languages, and informed written consent was obtained from those who agreed to participate and have the interview audiotaped. the mothers were assured of confidentiality and that the information from audiotapes would only be used for this study, and that audiotapes would be destroyed after finalisation of the study. findings demographic characteristics a total of 20 mothers participated in this study. they were aged 19–36 years (mean = 26 years). of the mothers, 15 were from rural areas and dependent on subsistence farming. four of the mothers were self-employed, selling vegetables at the market, making tablecloths, and one making a ‘home-brew’. fifteen mothers were married; 11 husbands were subsistence farmers; four others were employed: a taxi driver, a gardener, a plumber and one self-employed person making basins. the five other mothers included in the study were divorced or widowed women and one was a 19-year-old school student. all mothers and most husbands would have had a very low income. the children were aged between 1 day old and 9 months on date of admission. there was a predominance of male (n = 14) children in comparison to female (n = 6) children. the children’s ntds included myelomeningocele (n = 10), meningocele (n = 6) and encephalocele (n = 4). emerging themes five themes emerged from the analysis related to the experiences of the mothers in accessing health care: access to health facilities access to transport access to information concerns about family support needs. access to health facilities mothers indicated that their experiences of accessing health facilities were a challenge, especially factors related to the birth of the child and the referral system. seven mothers had given birth at home (six from rural areas and one from lusaka) and 11 mothers in a health facility (two in a clinic, eight at a primary level hospital and one at a secondary level hospital). two mothers had given birth on the way to the health facility: one in a stranger’s home in the urban area and the other in the bush in the rural area. ‘we were walking from home on our way to the hospital, then i felt that i could not manage to reach the hospital … we asked for assistance from one of the houses on the way and i delivered there.’ (mother 28 years, child with lumbar meningocele) ‘as we were walking, i just felt my legs were heavy and i could not walk so my sister in-law just put the chitenge [cloth wrap women wear] on the ground and i delivered there … yes, in the bush … home was very far away and the clinic was also far away … after the baby was born, we continued walking to the clinic.’ (mother 23 years, child with occipital encephalocele) all the children needed to be referred to the next level of health facility until they reached the tertiary level hospital, as hospital staff at lower levels did not have the skills to work with children with ntds. these facilities included the local health clinic (the health centre in an urban area or the health post in a rural area), the primary or first level hospital, the secondary level hospital and the tertiary level hospital (uth) in lusaka. ‘so they [nurses] said, this problem, we can’t do anything here, so you will go with other patients to ndola [secondary level hospital] using the hospital vehicle.’ (mother 28 years, child with lumbar meningocele) ‘the person at the clinic sent a radio message to [name of hospital] and the ambulance came to pick us. i asked if i could go home to pick up clothes for the baby but they said no.’ (mother 23 years, child with occipital encephalocele) although all the children were immediately referred from the local health clinic to a primary level hospital, eight mothers reported that doctors at this hospital subsequently sent them home. some needed to go home to find transport money: ‘i was admitted and after two days, i was given a letter to take to lusaka … so we had to go back [to the village] to look for transport money to go to lusaka.’ (mother 21 years, child with encephalocele) one mother was told she must go home, as her child was too small to be transported to lusaka. some children were sent home despite having unstable lesions: ‘so we went home and we stayed there. then we noticed that the head of the baby was getting bigger. so we went back to the hospital … when i went back, they told me “we advised you to go to lusaka”.’ (mother 25 years, child with lumbar meningocele) access to transport transport was one of the greatest challenges that most of the mothers experienced. they talked about difficulties with finding transport from home to the local health facility. while some mothers used public transport, others walked or were given a lift on a bicycle: ‘i was carried on a bicycle from home to the hospital.’ (mother 20 years, child with large encephalocele died a few days after surgery) it was costly to find transport from the local clinic to the primary level hospital to the secondary level hospital and, subsequently, to the tertiary level hospital (uth). although some mothers were given free transport by the health facility, one mother paid for the fuel for the hospital vehicle: ‘the hospital staff said that they didn’t have money for fuel … they told us to put fuel in … the hospital vehicle so that we could travel in it to lusaka. so we gave them some money.’ (mother 19 years, child with lumbosacral myelomeningocele and hydrocephalus) the staff at two facilities contributed their own money to enable two mothers travel to lusaka with the children: ‘the doctor said that where you are going, you will need some money. so the staff at the hospital contributed some money.’ (mother 36 years, child with lumbar myelomeningocele) at other health facilities, mothers were not given any help with transport and were told to find their own transport to the referral hospital. one of these mothers went to the local authority in the town, where a vehicle was provided to transport the baby and her husband with her to lusaka. ‘after three days, the [baby’s] condition was just getting worse. i said this head is becoming worse, so i went back … so i left home and i said to myself “let me just go to the dc [district commissioner]”.’ (mother 25 years, child with lumbar meningocele and hydrocephalus) one mother went home and stayed there until some strangers, visiting the village, gave her some money for transport: ‘we did not have money to go to lusaka so we went back home and stayed for three months. later some white people came to our area and they gave us some money to take the child to lusaka.’ (mother 21 years, child with occipital encephalocele) one mother had to sell the family’s cash crop of maize to obtain the transport money. another mother had travelled by bicycle to the neighbouring country, hoping that she could have easier access to appropriate health care. ‘someone advised us to go to malawi … and there they told us to go to lilongwe [the capital city] … we had to come back because we didn’t have money to go there.’ (mother 25 years, child with lumbar meningocele) almost all mothers were concerned about how they would afford transport to go home when the child was discharged from uth. even the mothers who had been assisted with getting transport to lusaka were worried about how they would go home, not knowing whether the referring hospital would send an ambulance to take them home or whether those who had assisted them (for example, the mother who was assisted by the district commissioner) would send transport to fetch them: ‘so they said you should call but each time we call they are outside coverage area [no telephone reception] … so now we are worried because we don’t know where we will find money to go back when the baby gets better.’ (mother 24 years, child with myelomeningocele and hydrocephalus) when asked about accessibility of health care services near their homes, mothers who lived near the first or second level hospitals indicated that they would not have any problems with access, but mothers who lived far from these hospitals expressed concerns about transport to these facilities. the majority of mothers indicated that they would experience transport difficulties if they were expected to return to lusaka for a follow-up appointment. ‘… but if they operate and say we should come back to lusaka for review, then there will be a problem with transport.’ (mother 22 years, child with myelomeningocele) ‘i cannot afford to move from mansa (town in luapula province) to this place. it is just too much [she laughs].’ (mother 24 years, child with nasal encephalocele) access to information most of the mothers expressed concern about the lack of information and uncertainty they were experiencing concerning their child’s lesion. despite attending antenatal care, the mothers were not aware that they were going to give birth to a child with an ntd; therefore, learning about their child’s neurological condition was a shock. ‘the time i was pregnant they thought i had twins, but when i delivered that is when they discovered the problem … i delivered well without any problems but when the child came out, i noticed this thing on the head.’ (mother 20 years, child with large occipital encephalocele who died few days after surgery) ‘i used to go for antenatal checks but they never mentioned about it … so i had little knowledge about this and it is very difficult, very distressing when you are going through this.’ (mother 28 years, child with lumbosacral myelomeningocele) mothers were concerned that the health workers were not explaining things to them. the mothers said they had no prior knowledge about ntds and wanted to know the cause. while some mothers wanted to know what kind of surgery their children would have, those whose children had not had surgery could not understand why children with similar conditions were already having surgery: ‘i have noticed that all of my friends’ babies with this problem are being operated on and i thought that even my baby will be okay if they operate.’ (mother 34 years old, child with myelomeningocele) some mothers also talked about the need to improve their own skills, and for more information on how to take care of the children. most mothers were concerned about the future of their children, as they wanted to know whether the child would be able to sit or walk: ‘i just want to find out if the baby will be able to sit because the wound is somewhere here where he’s supposed to sit, so i’m wondering how he can sit.’ (mother 25 years, child with lumbar meningocele) concerns about family mothers expressed concerns related to their families. unaware of the unborn baby’s neural lesion and that they would need to go to the tertiary level hospital in lusaka immediately after the birth, mothers went to the usual health facility to give birth. they had made no provision for someone to care for their other children for a lengthy period. while some mothers had left their other children in the care of relatives, some were worried, as they had not had the opportunity to make such arrangements: ‘i just left the other children with no one to take care of them.’ (mother of two other children, 23 years old, whose child with occipital encephalocele was born in the bush on the way to hospital) the tertiary level hospital allowed only one person to spend the night next to the child’s bed: in general, it was the mother who was breastfeeding. when a husband had accompanied the mother to lusaka, he would have to find his own place to sleep and food to eat. this increased the mother’s anxiety. ‘my husband is suffering a lot and sometimes he sleeps outside and sometimes they chase him. he has nowhere to stay … yesterday i don’t know where he slept. the watchman took him … yes, they just took him outside, so he went and slept there.’ (mother 25 years, child with lumbar meningocele and hydrocephalus) ‘he just comes to see me, then he goes to the inter-city bus station to sleep, then he comes back in the morning.’ (mother 20 years, child with large occipital encephalocele who died few days after surgery) some mothers were concerned about their families’ beliefs about the child having an ntd. one 25 year-old mother from the eastern province gave birth at home to a child with a lumbar meningocele (not an open lesion). her husband and her in-laws refused to let her go to the hospital, instead applying traditional herbs to the lump on the child’s back. it was only after a week, having convinced the family, that she could take the baby to the clinic where she was referred to the hospital. the nature of the family’s beliefs and the herbs used were not investigated. support needs mothers described the need for both family support and government support. a number of mothers received support from their families prior to admission at uth. when financially possible, the extended family assisted mothers who needed to pay for transport to lusaka. ‘so my relatives said that since this baby is supposed to go to lusaka, we are going back to the village to look for money so that we can travel well to lusaka.’ (mother 19 years, child with lumbosacral myelomeningocele) most mothers from rural areas had a family member, frequently the husband, who accompanied them to the primary and secondary level facilities and then to lusaka, to give them support. however, some mothers whose relatives stayed a long way from lusaka said they received no family support. during their stay at uth, some mothers received support from relatives in lusaka, including being visited by them, given food and help with taking care of the baby. ‘my sister in-law is helping me. at night i go home [to her relative’s house] and wash the wound [had c-section], then i come back early in the morning.’ (mother 28 years, child with lumbosacral myelomeningocele) despite having relatives in lusaka, some mothers did not have any support from them as these relatives were unwell or the family relationship was difficult. ‘you know i was so heart-broken because this is the person i thought was going to keep me … so i can’t stay with her.’ (mother 36 years, child with lumbar myelomeningocele) additionally, family members played an important role in taking care of the mothers’ other children who had been left at home. some health facilities had supported the mothers by organizing transport for them. at the uth, both the mothers and those who had escorted them were provided with lunch and supper. when asked how the government should help other mothers who are in a similar situation, the mothers said the government needs to ensure that children with ntds are transported to the referral hospitals as soon after birth as possible. hospitals needed to provide transport, or the social welfare should provide transport money, to those who could not afford it. ‘but there must be social welfare to assist with transport money so that the baby is quickly taken to the hospital … but you know in our areas, such services, they say they don’t have enough money.’ (mother 36 years, child with lumbar myelomeningocele) furthermore, one mother wanted the government to provide wheelchairs for children who were unable to walk. discussion the demographic characteristics of mothers in the current study are similar to those in other studies in africa. the mean age of mothers in the current study was 26 years, and most of them were from poor socio-economic communities dependent on subsistence farming. a record review at the two hospitals in zambia providing surgery for children with ntds indicated that the most common age group was 1–6 months old, with 61% of children having myelomeningocele (mweshi et al. 2011). a study in kenya reported a mean age of 8.5 months at the time of the initial operation (margaron et al. 2010). similar findings were reported in nigeria by adeleye et al. (2010), who found that the mean age of mothers of children with ntds was 28 years and that most of them were from poor socio-economic backgrounds. the findings of this study are discussed using the four dimensions of the access to care framework, accessibility, availability, affordability and acceptability, as described by jacobs et al. (2012) and peters et al. (2008) and the supplyand demand-side barriers affecting access, as described by jacobs et al. (2012). accessibility in rural areas of zambia, the geographical distance is a barrier for poor people to access health care, including at local health centres. as described by jacobs et al. (2008), this is a supply-side barrier to access, as the locations of services are too far from the population served. in zambia, it is estimated that about 99% of people in urban areas live within 5 km of a health facility, while in rural areas only 50% are within this range (moh [zambia] n.d.). in this study, mothers were not aware that their child had an ndt; therefore, this was not a factor in deciding where to deliver. eight of the nine mothers who did not deliver at a health facility lived in the rural areas. seven mothers delivered at home and two mothers delivered on their way to the health facility. three of the mothers who did not deliver at a health facility gave birth to children with myelomeningocele, predisposing their babies to infection. according to shehu and ameh (2004), in sub-saharan african countries, most babies with ntds are delivered at home with risk of infection as a result of rupture of the myelomeningocele. those with hydrocephalus may experience asphyxia arising from obstructed labour and risk of brain damage. according to the zambia demographic and health survey (cso, moh & icf international 2014), an estimated 67% of all deliveries in zambia are at a health facility. however, when comparing urban and rural areas, it is found that 89% of urban births in zambia take place in a health facility, while only 56% of rural births occur at a health facility. houweling et al. (2007) add that home deliveries are common in lowand middle-income countries, especially amongst women from poor socio-economic backgrounds. according to de groot (2008), the main reasons for home deliveries are the distance required to walk or the time required to travel to the facility. geographical distance from home to health facility has been identified as a major barrier to health care in lowand middle-income countries (al-taiar et al. 2010). a study in south africa by harris et al. (2011) reported that this was a greater barrier in rural areas and in poorly resourced provinces. similarly, a systematic review of studies conducted in lowand middle-income countries (1990–2006) identified the place of residence, distance and transport to the health facilities as the main factors affecting the use of antenatal care services in lowand middle-income countries (simkhada et al. 2008). a systematic review of socio-economic differences in morbidity and access to health in uganda found that many studies identified distance from a health facility as one of the most common barriers to access (kiwanuka et al. 2008). although distance to the health facility has been found to be a major reason for home delivery, according to a study in zambia by sialubanje et al. (2015), there are other reasons which include a lack of money for transport and the requirement to bring baby clothes and food while in hospital. similarly, a study in tanzania reported that the most common reasons given for home deliveries were the distance to the health facility and a lack of money, including a fear of caesarean section and a lack of privacy in the labour room (mrisho et al. 2009). accessibility is also determined by transport, which is essential when a pregnant woman is unable to walk to the health facility to give birth. jacobs et al. (2012) described this difficulty with transport, including both the distance between the home and the health facility and the public transport available, as a demand-side barrier to access. unlike all the mothers from rural areas, the three mothers in this study who were living in lusaka where surgery could take place reported that their child was referred to uth within 24 h of birth. follow-up visits after surgery are important for children with ntds, especially those with myelomeningocele and hydrocephalus, because it increases their chances of survival (warf 2011). in uganda, where children with myelomeningocele were followed up postoperatively by a community-based support person, the children had a higher 5-year survival compared to those who were not observed by the programme (warf, wright & kulkarni 2011). in this study, most mothers from rural areas said that it would be difficult to return to lusaka for a follow-up appointment because of the distance to the hospital and the cost of transport. these reasons are consistent with what has been found in other studies in lowand middle-income countries where follow-up visits are deterred by distance and transport costs (de paul djientcheu et al. 2008; pirani et al. 2009). availability the inequitable distribution of health workers and physical infrastructure and the consequent lack of capacity to provide quality health care have been reported on by the zambian government (moh [zambia] n.d.). at each level, access to health care is affected by the availability of skilled health workers, essential drugs and medical equipment. none of the mothers in this study had a prenatal diagnosis of ntd. according to reports from other african countries, even where prenatal testing is performed, it frequently fails to identify congenital anomalies (adeleye et al. 2010; de paul djientcheu et al. 2008; rabiu & adeleye 2013). a prospective study of central nervous system anomalies in nigeria reported that although 80% of the mothers had prenatal ultrasound, the anomaly was only diagnosed in 14% (adeleye et al. 2010). a similar study in nigeria reported that although 97% of the mothers of children with central nervous system anomalies had prenatal ultrasound, the detection rate was only 24.5% (idowu & olawehinmi 2012). the shortage of skilled health workers, who are able to make a correct prenatal diagnosis, is a supply-side barrier to access to health care (jacobs et al. 2012). in general, after referral, hospital transport was not available for the mothers at the primary level health facility, but was available at the secondary level facility. this was a supply-side barrier. the mothers wanted all the health facilities (as government institutions) to provide this transport on referral. having hospital transport available is an important factor in accessing health care, particularly in rural areas. furthermore, the mothers, including those who had been transported in a hospital vehicle to the tertiary level hospital, were very worried that there would be no hospital transport provided for them to return to the rural areas. affordability peters et al. (2008) describe affordability, which is directly associated with poverty, as one of the most important determinants of access. affordability relates to financial barriers to access, including both direct and indirect costs. a systematic review on barriers to surgical care in lowand middle-income countries identified the direct costs as those that are related to care: transport, hospital stay, surgery, drugs, laboratory tests and medical supplies. indirect costs included the loss in productivity and income, and the cost of a caregiver (grimes et al. 2011). although health care services for children are free in zambia, the direct and indirect costs can be demanding, especially for those from rural areas. according to the world bank (2016), zambia, a lower middle-income country, has a very unequal income distribution, with 60% of the population living below the poverty line and 42% considered to be in extreme poverty. the zambia national health strategic plan (2011-2015) states that poor people from rural areas face access barriers, including transport costs, time costs, and food and accommodation for in-patients and relatives (moh [zambia] n.d.). transport costs are a major barrier to access health care services amongst the poor and those in rural areas (goudge et al. 2009; harris et al. 2011). in this study, the major direct cost was transport, including the initial transport to the local health clinics and subsequent transport costs when the child was referred to the secondary and tertiary level hospitals. as described by peters et al. (2008), this cost was related to the distance to the health facilities, in particular affecting mothers from rural areas and those who were not assisted with hospital transport. most of the mothers in this study had no source of cash income and relied on subsistence farming. one mother sold the maize, which the family expected to use as food in the coming months, to pay for her transport to lusaka. selling household assets or borrowing to pay for health care services is common in lowand middle-income countries where people, mostly the poor, use out of pocket money to finance health care services (alam & mahal 2014). when mothers were accompanied by their husbands, there was no one to work in the fields, thus affecting income and food for their families, which is an indirect cost. health service utilisation is the lowest amongst poor populations (o’donnell 2007; peters et al. 2008). a systematic review of socio-economic differences in morbidity and access to health in uganda found that many studies identified distance from a health facility as one of the most common barriers to access (kiwanuka et al. 2008). the cost of transport for the mothers is a demand-side factor related to affordability that is directly associated with distance from a health facility (jacobs et al. 2012). because of private transport costs, mothers rarely had any expectation of being able to return to uth for follow-up visits. mothers who received transport support from the referring hospitals were able to reach lusaka in good time despite coming from poor socio-economic backgrounds. similarly, penny et al. (2007) reported that in uganda many children with motor impairments from poor rural populations were able to access the health services when they received financial and transport support. as thiede and mcintyre (2008) noted, health care financing can have a significant effect on affordability by giving poor communities the opportunity to access health care without incurring any costs. acceptability the cultural practices in a particular society can be demand-side barriers affecting access to health care. women’s lack of decision-making power has been found to delay access to health services, and may contribute to the high mortality rate amongst children in poor areas (bronsard et al. 2008; fantahun et al. 2007). in a study in rural zambia, sialubanje et al. (2015) found that women’s lack of decision-making autonomy and their dependence on their husband and other family members for the final decision were reasons for home deliveries. home births are common in zambia despite attempts to phase out traditional birth attendants. regardless of the mother’s choice, many traditional families insist that a traditional birth attendant delivers the baby at home. in a study on access to and utilisation of health services for the poor in uganda, kiwanuka et al. (2008) reported that most poor women used traditional and untrained health personnel to assist their delivery. in this study, in addition to the home births, one mother reported that her husband’s family delayed her taking the child to the health facility as they wanted to apply herbs directly onto the lesion on the child’s back. most studies exploring the needs of parents of children with disabilities have reported access to information as one of the most important aspects mentioned by parents (palisano et al. 2010; resch et al. 2010). in this study, after delivery mothers did not have any understanding of what was wrong with their child. in a systematic review to understand the burden of spina bifida on caregivers, it was reported that at the time of the initial diagnosis, about 53.3% of mothers of children with spina bifida did not know that, in the future, their children would have bowel problems (rofail et al. 2012). according to resch et al. (2010), providing information to parents on the type of disability and services available at the time of diagnosis helps reduce parental stress. in a study conducted in south africa, caregivers of children with learning disabilities reported that their lack of knowledge about their child’s condition was one of the main causes of their experiences of distress and anxiety when caring for their children (sandy, kgole & mavundla 2013). giving information during the initial diagnosis helps families to plan for their child’s future, learn of the services available and understand the long-term implications of their child’s condition (jeglinsky, autti-rämö & carlberg 2012; palisano et al. 2010). provision of information is a supply-side factor that can be used to facilitate acceptability of health care services amongst mothers of children with disabilities, and to increase utilisation of health care services for their children. limited education may be a demand-side factor affecting access when mothers do not recognise illness or the potential benefits of getting health care (o’donnell 2007). the mothers’ social responsibilities, or the cultural and social distance between health care services and users, as described by simon (2008), are another factor that can affect acceptability of the service. in this study, most of the mothers were concerned about the children who remained at home, while those women who were escorted by spouses were worried about the living conditions of their spouses in terms of accommodation and food. this is in line with the findings of peters et al. (2008), who noted that, apart from worrying about the condition of the child, parents of hospitalised children in lowand middle-income countries also worry about other things such as cost of food and accommodation during the child’s hospitalisation. furthermore, a systematic review on barriers to surgical care in lowand middle-income countries reported that the absence of a person to escort the family member to the hospital was a stronger factor in preventing access to surgical care than fear of surgery (grimes et al. 2011). in lowand middle-income countries where some hospitals do not provide meals or accommodation for patients and caregivers, family support is an important factor in terms of acceptability (gyasi, amoaku & asamany 2007). although the hospital provided meals for the mother and the person who escorted her, some mothers in this study who were accompanied by their husbands to lusaka experienced an additional concern about their spouse’s living conditions. thus, the absence of relatives near the urban referral hospitals may be considered a demand-side factor that affects access to health services by reducing compliance to referral. at times the attitude of the health care workers, which is a supply-side factor, may have affected referral in this study. while some health workers recognised children born with ntds require immediate referral to specialised services, at other hospitals health workers sent the children home. whether or not this incorrect advice resulted from inadequate knowledge or negative attitude, a delay in receiving specialised treatment may lead to a deterioration of the condition, and increased operative and mortality risks (komolafe, komolafe & adeolu 2008). despite this, there were occasions where the attitude of the health personnel was a facilitator, for example, when they contributed money to pay for the mother and child’s transport to the tertiary level facility for surgery. although every attempt was made to ensure trustworthiness of the data, there were some limitations including the language barrier between the researcher and four of the participants whose languages the researcher was unable to speak. research assistants, who were able to speak the mother’s language, conducted the interviews. however, this would have affected the depth of the data collected as well as the interpretation of nuances within the data. the second limitation was the study sample, which only included mothers who had managed to report to the tertiary level hospital. this introduced a sample bias into the findings, as there may be mothers who found difficulties with access to the tertiary facility were too great. a study that includes mothers at primary and secondary level facilities might provide additional information on their experiences. conclusion through the use of qualitative methodology, this study has given voice to mothers of children with ntds in zambia by describing their experiences of getting access to health care and the tertiary level health services for their children. ensor and cooper (2004) have argued that the demand-side barriers may be a greater factor in reducing access to health care in poor and vulnerable populations than the supply-side barriers; however, effective methods for reducing them have not been evident. important demand-side barriers for rural mothers included geographical inaccessibility or distance between home and the health facility and limited public transport to health facilities. other demand-side barriers that affected the acceptability of the service included the inability of mothers, who were subsistence farmers, to afford public transport, and the attitudes and cultural practices of the mother and father’s families concerning the health services and an absence of supportive relatives near the health facility. supply-side barriers included the distance between health clinics and homes in rural areas, the absence of health workers with appropriate knowledge, skills and a caring attitude at each health facility level, information not being provided to mothers and the lack of hospital transport affecting access to the next facility level, following referral. interventions to improve access to health facilities in zambia need to differentiate between supply-side and demand-side factors in order to ensure that newborn babies with ntds have access to quality health care. a holistic approach is needed. the mothers recommended that the government should make transport a priority. while some factors can be addressed by the zambian ministry of health, other government departments such as the transport department need to become involved. furthermore, the training institutions need to take note of the findings and use them to inform their curricula. the development of such policies in other african countries with similar gross domestic products might facilitate access to health care for children born with ndts. access to tertiary level facilities for surgical intervention is essential for babies born with ntds. if closure of an open lesion is to be performed within 24 h, as advised by lazareff (2011), there is an urgent need for an effective referral system and the provision of transport. furthermore, as warf (2011) has argued, following studies in uganda, not only is surgery important, but also follow-up through programmes such as community-based rehabilitation have been found to significantly increase the chances of survival. as mcqueen et al. (2010) state, essential surgical care needs to be considered as a basic human right. this study helps to emphasise that governments in sub-saharan africa, including zambia, must develop health and other policies to ensure equal access to health care, including surgery and follow-up care. acknowledgements thanks to the mothers who gave so freely of their time, generously sharing their experiences, without whom this study would not have been possible. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions this article draws on the thesis of m.m.s. for the masters of science degree at the university of the western cape. p.m.s. was the main research supervisor. m.m.m. was the co-supervisor based in zambia. all three authors have contributed towards various drafts of the article. references adeleye, a.o., dairo, m.d. & olowookere, k.g., 2010, ‘central nervous 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methods to questions in information and library science, pp. 308–319, libraries, westport, ct. abstract introduction the state of disability in higher education methodology ethical and validity considerations results and discussions conclusions and recommendations acknowledgements references footnotes about the author(s) paul emong department of community and disability studies, kyambogo university, uganda lawrence eron department of special needs studies, kyambogo university, uganda citation emong, p., eron, l., 2016, ‘disability inclusion in higher education in uganda: status and strategies’, african journal of disability 5(1), a193. http://dx.doi.org/10.4102/ajod.v5i1.193 original research disability inclusion in higher education in uganda: status and strategies paul emong, lawrence eron received: 29 apr. 2015; accepted: 04 mar. 2016; published: 02 dec. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: uganda has embraced inclusive education and evidently committed itself to bringing about disability inclusion at every level of education. both legal and non-legal frameworks have been adopted and arguably are in line with the intent of the convention on the rights of persons with disabilities (crpd) on education. the crpd, in article 24, requires states to attain a right to education for persons with disabilities without discrimination and on the basis of equal opportunities at all levels of education. objectives: despite uganda’s robust disability legal and policy framework on education, there is evidence of exclusion and discrimination of students with disabilities in the higher education institutions. the main objective of this article is to explore the status of disability inclusion in higher education and strategies for its realisation, using evidence from emong’s study, workshop proceedings where the authors facilitated and additional individual interviews with four students with disabilities by the authors. results: the results show that there are discrimination and exclusion tendencies in matters related to admissions, access to lectures, assessment and examinations, access to library services, halls of residence and other disability support services. conclusion: the article recommends that institutional policies and guidelines on support services for students with disabilities and special needs in higher education be developed, data on students with disabilities collected to help planning, collaboration between disabled peoples organisations (dpo’s) strengthened to ensure disability inclusion and the establishment of disability support centres. introduction1 uganda has embraced inclusive education and evidently committed itself to bringing about disability inclusion at every level of education. the commitment is demonstrated by the legal and non-legal frameworks on education and the establishment of educational infrastructure aimed at mainstreaming disability. the infrastructures include a department of special needs education at the ministry of education, science, technology and sports, a special needs education section at the uganda national examinations board, a department at the national curriculum development centre, a section at the education standards agency, representation of persons with disabilities at the national council for higher education board, public universities councils and training of teachers for special needs education. the bulk of these infrastructures are visible in promoting inclusive education at primary and secondary levels of education. the impact of the above developments is the increasing enrolment of students with disabilities in higher education being experienced recently. however similar infrastructures are not evident in higher education. there is however, affirmative action on admission of students with disabilities and other marginalized groups to public universities. although this affirmative action is seen to be widening opportunities for students with disabilities to higher education, the law providing for it appears not to compel private universities2 to comply. the right to education for students with disabilities in uganda is still suffering from discrimination. disability rights are often honoured in the breach (lang, et al 2011), which leads to failure to achieve equal opportunities particularly in higher education. this article examines the status of disability inclusion in higher education and strategies for its realisation in uganda. specifically, it explores experiences about disability inclusion in higher education, pointing out how discrimination and exclusion is demonstrated in admission, support services provided, access to libraries and halls of residence, lecture rooms, mode of delivery and mode of assessment. the right to education the un human rights law framework recognises education as a universal right and as enabling right to the attainment of other rights3. denying an individual a right to education is arguably condemning such an individual to a denial or limitation in the enjoyment of fundamental rights. in general terms, the un human rights law framework outlaws discrimination in education at all levels4 and comprehensively requires states to make educational services available, accessible, acceptable and adaptable,5 including to set minimum standards and to improve quality.6 these standards apply to people with disabilities as well by the principle of equality and non-discrimination, the cornerstone of the human rights law,7 based on the philosophy of inherent dignity and of the equal and inalienable rights of all human beings (lauren, 2003).8 in examining the status and strategies for disability inclusion in higher education in uganda, this article uses the foundation principles of inclusive education of equality, access and equal participation for all in every level of education (source). the critical question is what does each of these principles mean in regards to disability inclusion in education. this article provides an exploration of that using the social model of disability, the notion of non-discrimination and the intent of article 24 of the convention on the rights of people with disabilities (crpd) as benchmarks informing inclusive education in regards to disability. a social model of disability is a theoretical understanding of the concept of disablement from a socio-political perspective (oliver 2009:57). the argument is that disability is something imposed on people with disabilities on top of their impairment by an oppressive and discriminating social and institutional structure (upias 1976:3–4). the social model of disability mostly explains the relationship between people with impairments and their participation in society (oliver 1990:22). the model is premised on the principles that impairment and disability are distinctively different (upias 1976 and oliver 1996:4–5). the argument is that disability is a social oppression, not impairment, and that disability is a social construction, and to a large extent is culturally produced and culturally structured (oliver 1996:22). for equal participation for people with disabilities, the model demands for the removal of the society’s economic, environmental, cultural and other barriers against people with disabilities (barnes and mercer 2010:30). the understanding of the social model of disability, in this article, brings about the operationalisation of the right to education for persons with disabilities without discrimination and on the basis of equal opportunities as enshrined in article 24 of the crpd. the aim of article 24 of the crpd is to bring about an inclusive education system at all levels of education, with emphasis on understating the relationship between the learning environment and the impairment needs of a person with disability and the notion of non-discrimination. based on article 2 paragraph 3 of the crpd the meaning of discrimination is wide enough to prohibit both intentional (direct) and non-intentional (indirect) discrimination or exclusion experienced by people with disabilities in society, including in education. direct discrimination is discrimination which is intentional or overtly directed to particular individuals or groups. direct discrimination is grounded on prejudices or stereotypes labeled on those group(s) of individuals. indirect discrimination concerns non-intentional discrimination arising from practices which are neutral in nature but discriminatory in effect. usually, these practices are embedded in institutional policies, norms and standards. in some jurisdictions, the concept indirect discrimination has since been developed to provide a broad scope of protection based on provision, criterion or practice (monaghan, 2007:338). arguably, the concepts ‘provisions, criterion or practice’ provide wide interpretation in relation to how higher education provides all arrangements for the students with disabilities. indirect discrimination acknowledges the fact that problems of inequality are both systemic and simply individual in nature and therefore provides a picture of how groups are affected. the development of protection under indirect discrimination is arguably the major milestone towards achieving substantive equality (meenan, 2007). in the perspective of disability, providing reasonable accommodation is one of the fundamental requirements for achieving substantive equality and is now a legal requirement of the crpd. reasonable accommodation means an essential practice to alleviate the disadvantage that arises for people with disabilities in the application of conventional requirements or systems (schiek and bell, 2007). the aim of reasonable accommodation is to bring about adaptation and change of the environment in order to remedy the detriment associated with the interaction between environment and impairment. in this article, the potential impact of reasonable accommodation is for institutions to adopt a proactive approach of avoiding discrimination against students with disabilities. arguably, reasonable accommodation requires dismantling of systemic barriers in educational institutions arising from accessibility related challenges, ignorance of staff about specific disability needs, provisions and practices which are historically embedded in educational exclusion. it requires matching the needs to the appropriate support that brings about equal participation of students with disabilities in learning, participation and development. the ugandan legal frameworks9 are largely in line with the requirements of attaining the right to education provided by the united nations human rights framework and fundamental principles of inclusive education. the constitution of the republic of uganda (1995), art 30 guarantees that all persons have a right to education. the intent of the constitution on higher education is reflected in the universities and other tertiary institutions act (2001) (as amended) and the persons with disability act (2006). the universities and other tertiary institutions act (2001) establishes the national council for higher education (nche) of uganda and details its mandates. the act confers upon nche the responsibilities / functions of monitoring, evaluating, regulating and guiding the establishment of institutions of higher learning.10 the function of guiding obligates nche with the responsibility to ensure disability inclusion in institutions of higher learning. it also requires that nche certify that an institution of higher education has adequate and accessible physical structures.11 this function mandates nche to ascertain the extent to which physical accessibility of the institution’s facilities is ensured, in regards to disability12. indeed, the act empowers the nche to revoke a provisional license to an institution if it finds it not meeting the minimum requirements pertaining to physical infrastructure13. unfortunately, in the act, section 110revocation of a charter, there is no mention about universal design and accessible facilities among the set grounds for such revocation. failure by an institution to provide universal design, accessible facilities, reasonable accommodation, appropriate instruction or teaching methods and qualified staff for special needs students is a path to the exclusion of students with disabilities in the institution’s programmes. on the composition of national council for higher education (nche), the act in section 7(1) (i) provides for representation on the council by, among others, a person with disability appointed by, the minister. similarly, on composition of a university council of a public university, the act provides that such a council must be comprised of, among others, 2 representatives of persons with disabilities, one elected by members of staff and another by national organisations of persons with disabilities.14 definitely, such representation is aimed at creating awareness about disability inclusion to nche so that, in its regulatory role, nche ensures disability mainstream. on admission to public universities, section 28 of the act provides for affirmative action for marginalized groups, including persons with disabilities. this is evidence that the act gives the opportunity of acquiring higher education to all people wishing to do so, including persons with disabilities.15 in addition, the act requires institutions to provide accessible physical facilities to the users of the public university.16 these are very noble objectives that expressly recognise persons with disabilities as among those who may wish to acquire higher education. however, the language in the act is specific to public universities. this implies that the act does not confer these obligations on private universities and other categories of institutions of higher learning. it is important to note, though, that some private universities admit students with disabilities based on their personal good will. the persons with disability act (2006), part ii guarantees a right to quality education to all learners with disabilities and special needs. it does this by conferring an obligation on government to promote educational development of persons with disabilities17 and prohibits their discrimination by all categories of educational institutions18. the act imposes duties on bodies including institutions of higher learning to eliminate barriers to accessibility19 and prohibits discrimination in the provisions of goods, services and facilities of which higher education is a provider.20 the act aims to develop an educational infrastructure that would guarantee an inclusive educational environment for all categories of people with disabilities21 through, among others, training of special needs teachers or personnel, formulation of and designing educational policies and programmes on inclusive education, providing structural and other adaptations in all educational institutions appropriate for the needs of persons with disabilities, committing not less than 10% of all educational expenditure to the educational needs of persons with disabilities, providing assistive devices suitable for students with special needs during examinations, including giving extra time. the act explains discrimination against persons with disabilities in education as refusal or failure to accept an application for admission in an educational institution by a qualified person because of that person’s disability; or setting terms or conditions that exclude persons with disabilities; or by denying or limiting access to any benefits or service provided by the educational institution to a student with a disability; or expelling a student because of his or her disability; or by subjecting a student with disability to any other unfair treatment relating to his or her disability. the meaning of discrimination provided for by the act prohibits either intentional or non-intentional discrimination as earlier discussed. however, the act’s meaning of discrimination is short of requiring institutions to provide reasonable accommodation. the state of disability in higher education ugandan higher education has undergone reforms accruing from the structural adjustments economic policies experienced around the mid-1980s. the reforms saw the liberalization and privatization of the economy, including education, in the 1990s. the detailed discussions about these reforms and their effects on education are outside the scope of this article. however, suffice to state here that these reforms were aimed at fulfilling the critical need to meet the growing demand for higher education. the number of applicants at that time was estimated to be three times more than the available places (kasozi, 2003) and there was need to reform the higher education sector to be relevant to the development needs of uganda (kasozi, 2005). these reforms have brought significant changes to higher education (mamdani, 2007, musisi & muwanga, 2003, kasozi, 2003). quantitatively, there has been a rapid expansion of institutions of higher learning within two decades from less than 34 institutions22 to 164 institutions (32 universities and 132 tertiary institutions of education) by 2012 (ubos, 2012) and increased number of students joining higher education (bloom, canning and chan, 2006), including students with disabilities. at the time of the reform, government had insufficient resources to provide for both basic and higher education, yet higher education in uganda was largely financed and managed by the state. the government of uganda then prioritised providing basic education and reduced its funding to higher education as a response to the global call for every state to ensure that every child’s right to basic education is met (un, 1993). this largely contributed towards achieving an inclusive education at primary and secondary levels of education. the training of teachers in special needs education at kyambogo university, a special educational needs unit at the uganda national examinations board (uneb), national curriculum development centre (ncdc) and the inclusion of special needs education component in the primary teachers’ college (ptc) curriculum were infrastructures put in place to ensure inclusive education. in higher education, similar infrastructures are lacking. moreover, as a result of improved education environment for learners with disabilities at primary and secondary levels of education, over 1000 students with disabilities are joining higher education annually23. although higher education opened its doors for students with disabilities, little was done to incorporate the aspect of disability inclusion and reasonable accommodation at the initial stages of the reforms. other than admitting students with disabilities through affirmative action by public universities, there is limited evidence of applying equal opportunities measures in other institutions of higher learning. these actions contravene the crpd requirement which obliges states to ensure that institutions of higher learning adopt reasonable accommodation for persons with disabilities in all matters and arrangements an institution makes. for students with disabilities, reasonable accommodation implies arrangements necessary for their admissions, teaching, learning and assessment, library, accommodation, disability support provision, participation in sports and recreation. according to emong (2014) it appears that the overall higher education environment is not changing in response to access requirements for admitted students with disabilities. he argues that institutions of higher learning lack disability policies, provide limited opportunities for admissions of candidates with disabilities, lack support services for students with disabilities and the libraries, accommodation, lectures, mode of delivery and mode of assessment are not easily accessible. methodology design and setting this research was undertaken over a period of six months. the overall methodological design is descriptive qualitative study. the focus of the design is on the scope, implementation and impact of disability legislations in higher education in uganda. the emphasis of this exploratory study is to gain insights (denzin & lincoln, 2000; patton, 2002) and document voices and subjective human experiences (silverman, 2010) of uganda disability law in the text, as well as on various ideological and policy factors in respect of disability inclusion in higher education. the study involved two levels. the first level was desk review of a study undertaken by paul emong on a similar topic in four universities (2 governments and 2 private) in uganda, analysis of education policies with a focus on higher education and statistical data on students with disabilities and other special needs at all levels. the second level gathered experiences on disability inclusion in higher education generated from two national workshops where the authors were facilitators and position papers drafted for ugandan national council for higher education, vice chancellors forum and the ministry of education, science, technology and sports of uganda. participants and procedure participants were drawn from among university staff and students with disabilities in emong’s study. altogether 46 university staff members from both science/medicine and humanities related faculties (n = 35 academic and 11 administrative staff) participated. a total of 121 students with disabilities were involved in the study. there were 5 focus group discussions of 10 student participants each, 14 student participants involved in in-depth interviews and 57 student participants filled questionnaires. the students with disabilities were drawn from the common disabilities in uganda of physical disability, hearing impairment, visual impairment and other health related problems. the participants in the national workshops were leaders of the national disabled peoples organisations (n = 10), members of university top management (n = 3), representatives from national council for higher education (n = 1), national council for disability (n = 1), ministry of gender, labour and social development where the docket of disability lies (n = 1) and students with disabilities (n = 10). a mixture of stratified, purposive and simple random sampling was used to draw participants in emong’s study. the universities were purposively selected, drawing from both public and private universities known to have students with disabilities. a stratified sample of one university, kyambogo university, was because of its specialty in disability, special needs education and rehabilitation training. the basis for purposively selecting university staff was their experience in working with students with disabilities. the teaching staff were at the rank of senior lecturers, heads of departments and deans of faculties. the administrative staff were particularly hall wardens who have direct interaction with students with disabilities. sampled students were drawn from the five disability groups mentioned earlier. a simple random sample was thereafter used to select students with disabilities that filled in the questionnaire and those who participated in the focus group discussions. purposive sampling of other students with disabilities helped to identify those who participated in in-depth interviews, picking from each category mild to severe disabling conditions. the national workshop participants were purposively selected based on their roles in the organisations and what they expressed about exclusion and discrimination of students with disabilities in higher education. instruments four types of tools were used for data collection, namely focus group discussions, survey questionnaire, in-depth interview and workshop (presentation and feedback). they were designed to capture information based on key themes related to admissions, provision of support services, access to library services, access to lectures, mode of delivery and assessment, participation in sports and recreation, and physical environment accessibility by students with disabilities in universities. a total of 117 questionnaires were sent out to students with disabilities in the four universities in emong’s study; 57 were filled and returned. in-depth interviews were held with 14 students with disabilities and 46 university staff in emong’s study. another in-depth interview was held with 4 persons with disabilities identified during the workshop in the second level of the study. in emong’s study 5 focus group discussions of 10 participants with disabilities each were held. each focus group was composed of students with the same disability. a workshop approach was used by the authors to attain information as mentioned earlier from the other participants in level two of the study. presentations of papers relating to disability inclusion in higher education were followed by discussions and recommended actions needed to bring about disability inclusion in higher education in uganda. data analysis information obtained from each of the instruments was analysed based on the themes. closed ended and open ended questions in the questionnaire were coded and analysed using statistical package for social science (spss) to generate descriptive data in emong’s study. the information generated from the open ended questions was grouped based on the key issues it represents. the key issues were clustered according to themes as presented in the present article. information obtained from focus group discussions, in-depth interviews and the workshop proceedings were recorded, transcribed into text, grouped into issues and themes generated. for purposes of strongly expressing issues on disability inclusion voices of participants are recorded. ethical and validity considerations ethical issues are present in all kind of research and arise at any stage. effort was made to seek informed consent, assurance of confidentiality and privacy (cottell & dowine, 2000). while names of institutions and organisations are included in the study, there has been anonymity of the individual participants involved in the study. validity does not belong to a separate stage in an investigation but permeates the entire research process (kvale & brinkmann, 2009). the process of control and rigour (lincoln & guba, 1985) was established by employing strict selection criteria, adequate sample size based on the population and data was double checked and returned to over and over again to see if the constructs, categories, explanations and interpretations make senses as presented in the excerpts of individual statements. results and discussions four themes were identified to inform this article. the themes document experiences of the opportunities and challenges in admissions, support services, access to library and access to lectures, mode of delivery and assessment. admission to higher education data indicated that students with disabilities were increasingly being admitted into institutions of higher education through different admission avenues. students with disabilities and other special needs can access higher education on merit through the advanced level (high school) results commonly referred to as direct entry, the mature age entry scheme, the diploma/certificate scheme and the 64 slots government provides for admission of persons with disabilities (pwds) to public universities on affirmative action. this section describes experiences related to admission of students with disabilities to higher education. admission in this paper refers to acceptance to enroll on a programme of study either through government sponsorship or on private sponsorship. although education is guaranteed as a right (gou, 1995), it is differentiated in this study for the purpose of who meets the costs of the study. admitted students are expected to receive a range of support services and systems to facilitate their academic and social inclusion. the outcome of this study indicated however that more students with disabilities experienced limited access to the academic programme of their first choice, office premises of the staff who should attend to their needs, information, auxiliary aids or systems and support services. it also appears that private universities and other government higher education institutions such as uganda colleges of commerce (uccs) and national teachers colleges (ntcs) rarely admit students with disabilities and other special needs through affirmative action. when these institutions have prior knowledge that the candidate has a disability the candidate is also not admitted. these limitations in the provisions are an obvious lack of reasonable accommodation necessary to enable students with disabilities and other special needs to manage learning and participation in different activities during their time in higher education. emong’s study reveals that, generally, a private university would only admit a student with disability on condition that it is able to meet the requirements of such a student. as noted by one private university official: ‘with the current facilities the university has and the existing staff knowledge on disabilities, we would not admit a blind or a deaf student. if they apply, they would be advised to join a university that has facilities catering for their needs.’ the argument for a university not to accept a student with disability when it does not have the required facilities would appear logically acceptable and realistic. whereas the actions by the universities to fail or refuse to admit qualified candidates with disability amounts to direct discrimination of students with disabilities and contravenes section 6(2a) of the uganda persons with disabilities act (2006) and the spirit within the international human rights law. these scenarios point out that institutions of higher learning have inaccessible educational infrastructure, have not thought of support systems and services to enable students with disabilities to access learning like other students if admitted into the university and are not aware of the implications of the lack disability inclusion. findings also indicate that universities rarely consider admitting students with disabilities to specific programmes of their choices, especially purely science based or medicine disciplines. as noted by one of the officials responsible for admissions: ‘a person should be capable of physically doing a practical. one should be able to physically see and hear what is being examined during a practical. thus, because of those conditions it is not advisable for a person with physical disability, visual impairment or hearing impairment to be enrolled for those courses as such a candidate cannot pass practical examinations.’ the opinion above depicts the understanding of disability by the official interviewed and its implications on the way disability inclusion in academic programmes in higher education is interpreted and can be attained. the opinion therefore merits analysis in relation to the meaning of disability. according to barnes and mercer (2010: 14-16) the treatment people with disabilities experience in society is informed by the meaning a given society or a service provider attaches to a disability. as shakespeare (2006:272) points out, disability appears to refer ‘to limitation and incapacity, or to oppression and exclusion, or to both dimensions’. if the opinion of the official above connotes disability to be a limitation or incapacity to perform a view that implies that impairment and a disability are the same, a medical / individual model understanding of disability (barnes and mercer, 2010: 30-33) then such a view potentially leads to exclusive discrimination of candidates with disabilities in some academic programmes. if the opinion considers disability as a result of barriers erected against students with impairments a view that implies impairment and disability are distinct, a social model understanding of disability (oliver, 2009) then it calls for provisions of measures to eliminate barriers to participation by students with disabilities who qualify to join higher education. these measures are widely known as the provision of reasonable accommodation to people with disabilities (lawson, 2008; waddington, 2007) and are legally mandatory in accordance with the un convention on the rights of persons with disabilities (crpd) art. 24(5). whereas the provision of reasonable accommodation to people with disabilities is seen as a plausible solution to their exclusion in society, there are situations whereby their exclusion is largely arising from the intrinsic limitations associated with impairment. in other words, there are impairments in relation to some academic courses where no amount of environment change would eliminate a disadvantage associated with the impairment. this kind of scenario raises the case of disability inclusion in higher education beyond the arguments of the social model of disability to concur with its critics who argue that, in some instances, impairment can be real in the exclusion of people with disability (crow, 1996; abberley, 1987; terzi, 2004; bury, 2000; thomas, 2002). it is important to note therefore, that, while the opinion of the academic participant quoted above might be true of particular academic programmes, interpreting it as broadly as it is presented may cause institutions of higher learning generally to discriminate against people with disability in some programmes, mainly science related and medical disciplines. thus, the consideration of qualified people with disability to enroll in some academic programmes should be under case to case basis, taking into account how provision of reasonable accommodation as appropriate individualised support measures can facilitate their learning. support services for students with disabilities the study outcomes show that only public universities are providing support services to students with disabilities. however, the support services are only being provided to those students funded by government. while naami (2015) found that pwds who work experience problems at work, irrespective of their sex, disability type and employment sector, these challenges at work place can be equated to the experiences of lack of support needed at a study environment. some of the support provided to students with disability is mainly personal assistance related support such as sighted guides for the blind, sign language interpreters for the deaf, helpers for those with physical disabilities and funds to purchase disability related devices, such as wheelchairs and braille material. the mode of providing these supports is reported to differ in the public institutions. the variance could arise from the lack of institutional disability policy, the silence in the persons with disability act (2006), lack of guidelines by the national council for higher education on the required support students with disabilities and special needs in higher education should benefit from and lack of supervision on the support provided by each institution. as stated by one institutions of higher learning: ‘this university has no written policy on provision of support to students with disabilities. the current practice is based on the minutes of the university council meetings on the welfare of students with disabilities adopted at least 8 years ago.’ arguably, if the said acts had these provisions, then both public and private institutions of higher learning would be compelled to comply with the requirements. without a policy on supporting students with disabilities, the support provided would be at the discretion of the officers of the institutions or any existing understanding for the support to these students. the implication is that the support is largely dependent on the good will of staff rather than on institutional policy. literature available indicates that prevailing practices regarding disability in institutions of higher education are entrenched in medical rather than social frameworks (collins & o’mahony, 2001, borland & james, 1999, riddell, 1998, reindal, 1995). such individualised perspective and tendency makes support services and systems limited, making staff favour one impairment at the expense of the others, students fearing to be singled out and discriminated against or for students to negotiate their needs and services with individual staff. the implication is making the extent to which this support is provided inadequate. as expressed by one leader of students with disabilities: ‘the monetary value of the basic requirements for a blind student to effectively study exceeds far much the financial support he/she receives from the university. a blind student receives during the first year of his/her studies, 1,400,000/= uganda shillings (ugx). he/she is expected to buy; a perkins machine which is 2,000,000/= ugx, a carton of braille paper at 94,000/= ugx, jaws computer software which is 2,300,000/= ugx, and a laptop computer which is at least 1,200,000/= ugx. for the student of limited mobility using a wheel chair, the cost of a new wheelchair is 400,000/= ugx and the university provides him/her 200,000/= ugx.’ privately sponsored students, in particular those with hearing impairment, are unable financially to employ a sign language interpreter. as such, they either share such services with a student funded by government or study without. as noted by one student with hearing impairment: ‘am told that the institution does not admit deaf people and that there are not provisions for interpreters. the lecturers claim they have no idea of how to help deaf students. we also miss out on group discussions. lecturers for ict are not considerate to us as explanations are made from any corner of the room and yet ict is critical for our learning. i am likely to take longer on my masters programme because of lack of accommodation.’ data indicate that in one university, the plight of students who are deaf going without an interpreter attracted the intervention of one lecturer. the lecturer threatened to take legal action against the university over what he termed as ‘a gross violation of the rights of students with disabilities to education’. the lecturer noted: ‘it came to my attention that a privately sponsored student was attending lectures without the services of sign language interpreter. the university does not see it as its obligation to provide disability related support services to privately sponsored students. but the student had no money to employ the sign language interpreter and attending lectures without the sign interpreter was a disadvantage to him. i felt bad about this situation so i informed the university that i will secede from the university and take the university to court over violation of rights of the deaf students. that is when the university employed a sign language interpreter to the deaf student.’ considering the cost of paying for an interpreter in addition to the tuition and recognising that an interpreter is the ear of the deaf student, the cost should be borne by the university in line with the requirement for reasonable accommodation. it is possible that students with deafness may be coming from poor families who can only pay for tuition, food and accommodation as a private student. this assumption is consistent with literature indicating that pwds are more likely to be poor, especially in developing countries (who, 2011, mitra et al, 2011, kassah, 2008). it is important to note that 19.7% of ugandans are poor and 42% of households earn their living from subsistence farming (ubos, 2014). in addition, opinions on attitudes of the society towards people with disabilities was still negative (masasa et al, 2005). thus, this study suggest that institutional policy needs to take into consideration provisions that are accommodative to private students taking cognisance of the fees that they pay, their family background and the right to education as enshrined in the international and national legislative documents. physical accessibility access to physical facilities describes how students were reaching to and benefitting from library facilities and services, lectures, mode of delivery and mode of assessment. generally, data indicated that physical accessibility was an overall impediment in all institutions of higher learning. responses from all participants indicated that other than the recently constructed buildings, all the old buildings which are the bulk of lecture rooms in institutions of higher learning are to some extent inaccessible to people with mobility difficulties and other disabilities. they agreed that libraries have limited books and other publications. because of the limited materials, restrictions are imposed on borrowing some of the library materials. there was acknowledgement of underdeveloped technological infrastructure, including internet services, in these institutions, which makes access to online materials very much limited. participants argue that access to online academic resources in all universities is still being developed. data indicate that all students with disabilities find the libraries inaccessible in one way or another. for example, students with visual impairments find the materials in the libraries uniquely inaccessible. first, the restrictions on borrowing books pose greater challenges to blind students than other students, especially for books which are on the reserve selves. a blind student referring to this book has to braille the material within the library, which is also an inconvenience to other library users arising from the condition that there must be silence in the library and the noise the brailing machine makes. a student with visual impairment recounts an experience: ‘i am not allowed to borrow a book and told to read in the library. i am not allowed to go in with my guide because she is not a student. in case i am allowed in with a guide, i am told the library is a quiet place and being read to by the guide is making noise to other readers. there is completely not consideration to my needs and yet am expected to perform at the same pace to other students.’ second, the modifications being undertaken in some libraries such as the provision of ramps target mainly people with physical disabilities. no consideration is made to other impairments save to a limited extent, the faculty of special needs and rehabilitation library of kyambogo university. modifications could be done if students with disabilities were involved in decision making and proposing how such modifications can be made. the lack of involvement and accommodation in decision making is consistent with naami’s (2015) study and world health organisation report on disability (2011). thirdly, neither the institutions’ main libraries nor the departmental libraries have accessible publications such as brailed books and periodicals, audio recorded publications in tapes, cds or accessible online journals. data indicate that institutions recognise their obligation to provide equal library access to all library users and blame the failure of provision on lack of resources. although, though this claim could be true it is possible to argue that the institutions may be lacking priority to disability inclusion. access to lectures, mode of delivery and assessment most storied buildings have never been modified. as experienced by a student with physical disability: ‘fellow students are more aware of our disabilities and are prepared to help than the lecturers. a lecturer finds you struggling to climb the stairs and just passes by you and does not even show concern. when lecturer reaches the lecture room, he/she begins lecturing without bothering to wait for you to reach.’ another student with physical disability states: ‘this semester i have missed 4 lectures because each time i went late, i felt it embarrassing and inconveniencing calling down my colleagues to carry me up. a class coordinator raised my concern to the head of the department during the first semester but to this end of the year, no response has been received.’ section 26 of the persons with disabilities act (2006) places a duty on the provider of a facility to make adjustments or to provide an alternative method of making the facility available to pwds in cases where a physical feature such as one arising from the design or construction of a building or access to premises makes it impossible for pwds to use that facility. while this does not require a provider to do anything which would fundamentally alter the nature of the service provided, the trade, profession or business, it is the inaccessibility that creates exclusion. on learning and in assessment, data indicate that most institutions lack the facilities to support students with disabilities and other special needs. for example, lecture handouts which are mostly preferred by students with hearing impairment and students with physical disabilities were not easily available. for those lecturers who provide no braille copies or put other accessible format were provided. students with visual impairments feel lecture handouts can be a double cost in terms of time and money. students with visual impairment have to braille the handouts by themselves. brailing requires a proficient reader which, most often, their guides are not, and as a result students with visual impairments rely on other students to read for them the print notes as they braille. an experience of a visually impaired student shows that: ‘one lecturer gave out notes for his module covering the whole semester, which was 300 pages. to transcribe that hand-out into braille; means producing almost 1000 braille papers of the notes. this requires a lot of time to do it and over relying on other students.’ while hearing students can get information informally from friends, students with hearing impairment need an interpreter or visual / print notices. late posting and inaccessible notices limit information access of particularly deaf students. while dictation of notes is more favoured by the students with visual impairments, it is a great impediment for students with hearing impairment. the challenge arises when the lecturer talks and writes on the board at the same time. in this a way, a deaf student would have to balance between looking at the interpreter and the written work. there is often a lag in time which is not considered. to those who use a hearing aid, it may not be beneficial either. from the experiences of one student with hearing impairment: ‘the hearing aid is useless. it captures every sound in the hall. i have failed to determine a suitable position for myself to sit in the lecture halls, in order to hear lectures properly. every side i try i cannot properly hear the lectures. the worst part is, even the height of a lecturer sometimes makes it difficult for me to hear the lecture. more so i do not even copy notes as most of the time lecturers dictate notes. i rely on photocopying notes from other students. in that respect, i spend a lot of money in photocopying.’ another student with hearing impairment stated: ‘i feel the lecturers have not understood our constraints. for me i don’t get information through dictation but that is the order of the day and that is what the lecturers are used to. in one of the assessment tests, the lecturer made corrections verbally as such i did not get the correctionshe informed the students that in number…, a zero is missing so please add it in front of that figure…. the other was when another lecturer gave us course work of 2 numbers. the verbal instructions were, “one number was to be done there and then as test; the other number was a take home course work.” because it was verbal instructions i did not hear it, as a result i did both numbers as a test. in some lectures, when i beg for pardon, the response is “i do not repeat.”’ section 21 of the pwda lays a duty on the responsible government authority to promote the rights of persons with disabilities to access information through the development and use of sign language, tactile and sign language interpreters, in all public institutions and at public functions, and brailling of public information, such as government documents, government newspapers and other publications. although the act is silent on providing relevant information like government documents electronically to those who cannot read braille, the demand is an international obligation that uganda is a signatory to. a similar challenge extends to examination as most examinations are mostly in print and institutions find it challenging transcribing brailed work into print for marking. the setting of questions takes limited consideration for the varying special needs of students. a visually impaired student recounts: ‘in one semester, i was forced to do only questions in section 1 as most questions in section 2 were mainly practical. i felt the examinations were hard for me. i felt again that my former secondary school is better than this university in understanding my disability as it was brailing examinations for me. this university finds it challenging to transcribe brailed works into print as a result; blind students do exams for the second semester when they have not known the results for the first semester examination including course work results. examinations are not brailed. i feel it is unethical. during examination we are asked to braille paper before doing it.’ section 20 of the pwda requires all public buildings to be accessible to all sections of the public who are invited to it and places a duty on the owners of public buildings to ensure this. the public buildings should have an accessible entrance, accessible pathways and accessible elevators. they should also have accessible toilets for diverse disabilities, and well-dimensioned staircases and ramps for people with mobility difficulty or in wheelchairs. the pwda requires that adequate railing should be provided around stairs, ramps and raised platforms. multi-storied buildings must have well-dimensioned elevators for convenient use by people with disabilities. the elevators should have embossed numerals on selector buttons and arrival signals to cater for visually impaired and deaf passengers simultaneously. the law also demands that ‘where it is difficult or unfeasible to install a ramp or an elevator to an existing building the owner of building shall provide platform lifts to provide accessibility’. although the experiences of students with disabilities in higher education depict generally their exclusion in the institutions, there are positive efforts to help the situation, which need to be enhanced. first, there is willingness among some staff to promote disability inclusion. second, there are some internal initiatives to support students with disabilities at faculty level in some universities. however, such support is mainly reactive ‘reasonable accommodation’ and appears to be dependent on the good will of the individual lecturers and not structurally framed within a formal policy. the experience at faculty level is that each faculty determines what to do when confronted with the needs of a student with disability; a practical faculty acknowledged a challenge to implementation, as seen from this excerpt: nothing special offered to students with disabilities, except we are considerate when setting level of achievement for practical activities. students with disabilities though not officially given concessions during practical classes and during assessment of practical are considered differently depending on their disability. section 27 of the act specifies that it shall be the duty of the providers of services to provide auxiliary aid or service where it enables or facilitates pwds to make use of a service. such services include sign language interpreters, sighted guides, wheelchair guides, readers and transcribers. it is arguable that lack of proactive planning for students with disabilities is attributed to the overall limited resources within which institutions of higher learning operate. we shall deal with barriers affecting students with disabilities as we receive students with disabilities. it is difficult to anticipate the barrier and plan for its removal within the limited resource environment we operate. overall, lack of equal opportunities on pwds and limited knowledge about disability in higher education has disadvantaging effects to some students with disabilities in some programmes. in some cases, some are forced to terminate their studies. kwesiga and ahikire (2006), cite a student whose studies were terminated due to prejudices about the cause of disability stating: there was also a case of a lame student who had to drop out of medicine at the third year because the instructors demanded so. according to one deputy registrar the student progressed well until she reached the stage for clinicals, and the lectures were of the view that clinicals and crutches could not go together. conclusions and recommendations the findings in this article, although they cannot be generalised, are expected to contribute to the theoretical discourse on disability inclusion in higher education in uganda. the experiences and voices presented herein have implications on informing institutional policies and practices, not only in uganda but regionally, in relation to including students with disabilities in higher education. disability inclusion in higher education will contribute to achieving the sustainable development goals, particularly goals 1, 3, 4, 5 and 8, and other international and national policy provisions aimed at contributing towards poverty alleviation that the government of uganda advances. cognisant that institutions are providing some support to students with disabilities, it can be argued in this article that there is some level of awareness by institutions of higher learning in uganda on the matter of disability inclusion. this awareness has however not been enhanced, probably due to the lack of established mechanisms for mainstreaming disability in higher education. the lack of established mechanisms can be attributed to the lack of guidelines or directives on disability inclusion for higher education. as such, there is need for policy directives requiring institutions to adopt reasonable accommodation and other equality of opportunities measures for students with disabilities. the uganda national council of higher education and the ministry of education, science, technology and sports are mandated to come up with guidelines on support services that institutions of higher education should provide to students with disabilities and other special educational needs. these guidelines should arise from the national and institutional policy provisions on disability inclusion in higher education. institutions of higher learning, as a matter of quality assurance, should be required to develop a institutional disability policy and strategic plans to implement it. government should include in her funding provisions a vote on disability inclusion. disability awareness should be a strategy that is created across all units, including among students, staff and visitors to the institutions. effecting disability inclusion will require that higher education institutions are compelled to collect data on students with disability and other special educational needs, and document their experiences to facilitate planning. collaboration with dpos and the equal opportunities commission on matters of data collection and creating disability awareness in institutions of higher learning is a necessity. the involvement of dpos is in line with the slogan ‘nothing for us without us’ and the stronger principle of the proposed sustainable development goals -‘leave no one behind’, the expertise and experience they have and the requirements of the crpd. the equal opportunities commission (eoc) is mandated to bring about equal opportunities in all institutions and organisations. as a sustainable strategy for disability inclusion in higher education, universities and other institutions of higher learning should establish a disability support centre. a disability support centre is a critical and an important infrastructure of the institutions in bringing about disability equality in the institution. the disability support centre will be a disability think tank for the institutions regarding disability inclusion and advising on disability mainstreaming. the support center also becomes a focal point for collaboration with stakeholders; a place for assessment of disability and providing advice to respective units within the university accordingly. the center should therefore be managed by staff with the requisite professional background, knowledge, skills and attitude. acknowledgements the authors would like to appreciate the constructive input made by the disability partners in the consultative workshops organised by action for youth with disabilities uganda (aydu), national union of disabled people of uganda (nudipu) and specific comments by victor locoro of kyambogo university. competing interests the research was funded by action for youth with disabilities uganda (aydu). the authors declare that they own any errors by 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for persons with disabilities, adopted by the united nations general assembly, forty-eighth session, resolution 48/96, viewed from http://www.un.org/esa/socdev/enable/dissre00.htm un, 1999, committee on economic, social and cultural rights (cescr), general comment no. 13: the right to education (art. 13 of the covenant), 8 december, e/c.12/1999/10, para. 6. unfpa, 2013, the state of uganda population report, ministry of finance, planning and economic development, kampala, viewed from http://www.countryoffice.upfpa.org/uganda upias, 1976, fundamental principles of disability, union of the physically impaired against segregation, london. waddington, l., 2007, ‘reasonable accommodation’, in d. schiek & m. bell (eds.), cases, materials and text on national, supranational and international non-discrimination law, hart publishing, oxford. footnotes 1. an earlier version of this article was presented to the ministry of education and sports and the national council for higher education, uganda. 2. see the wording of section 28 of the universities and other tertiary institutions act 2001 (as amended). 3. see un committee on economic, social and cultural rights (cescr), general comment no. 11: plans of action for primary education (art. 14 of the covenant), 10 may 1999, e/1992/23, available at: http://www.refworld.org/docid/4538838c0.html [accessed 1 may 2016]. 4. see the universal declaration of human rights (udhr), art 26(1). 5. un committee on economic, social and cultural rights (cescr), general comment no. 13: the right to education (art. 13 of the covenant), 8 december 1999, e/c.12/1999/10, para. 6. 6. see article 13 of the international covenant on economic, social and cultural rights (icescr). 7. see the un charter art 1(3) and 55 (3) and un bill of human rights i.e. the universal declaration of human rights (udhr) art 2, the international covenant on civil and political rights (iccpr) art 2(1) and the international covenant on economic, social and cultural rights (icescr) art 2(2). 8. see also the preamble of the universal declaration of human rights (udhr) art 1. 9. other legal instruments of the draft special needs and inclusive education policy (2011). 10. universities and other institutions act (2011) s. 5(g); 11. s. 5(l); 12. s. 112(2)(e) and (i); 13. s. 117/ 14. s. 38(1)(r); 15. utia s 24(1) (b). 16. ibid s 24(1) (c). 17. ibid s 5. 18. ibid s 6. 19. ibid part iv. 20. ibid, second schedule parts 7 and 8. 21. ibid s.6. 22. prior to the structural adjustments to economic policies, there was only one state university, makerere university, and 33 other tertiary institutions of education. see the national council for higher education, ‘recognised universities 2010’. http://www.unche.or.ug/page2.php?nid=27 23. the author estimates this number from table 2.2.8: secondary school students with special needs, (2007-2010) of the uganda statistical abstract 2013. it is indicated that in 2010, there were 843 students with special needs in s.6. abstract introduction challenges and enablers of caregiving within the south african context methods findings challenges to caregiving for mothers of cwds enablers of caregiving discussion factors supporting healthcare access conclusion limitations acknowledgements references about the author(s) marcia a. torres division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa chioma o. ohajunwa division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa africa centre for inclusive health management, faculty of economic and management sciences, stellenbosch university, cape town, south africa citation torres, m.a. & ohajunwa, c.o., 2025, ‘care perspectives: mothers of children with disabilities in a peri-urban setting in south africa’, african journal of disability 14(0), a1463. https://doi.org/10.4102/ajod.v14i0.1463 original research care perspectives: mothers of children with disabilities in a peri-urban setting in south africa marcia a. torres, chioma o. ohajunwa received: 10 may 2024; accepted: 03 feb. 2025; published: 21 mar. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: within lowerto middle-income countries, mothers of children with disabilities often bear the burden of caregiving for their children, and experience various familial, systemic, structural and sociocultural challenges to the fulfilment of this role. objectives: this article discusses the barriers and enablers to caregiving experienced by mothers of children with disabilities living in a peri-urban setting in south africa. method: a qualitative study using in-depth interviews was implemented with six mothers of children with disabilities, recruited through total population sampling. interviews were conducted in three south african languages – english, isixhosa and afrikaans. the interviews were translated, transcribed and analysed thematically. results: key challenges experienced in care giving include poverty, a sense of abandonment and communal stigma. despite the challenges, the mothers identify spirituality and empathetic healthcare workers as a support for caregiving. conclusion: mothers of children with disabilities experience isolation and stigmatisation, are often alienated from accessing community structures on an equal basis with others, creating a barrier to caregiving for these mothers. an inclusive and targeted approach is needed to raise awareness and create peer support groups for mothers of children with disabilities. contribution: a sense of isolation, financial challenges and familial abandonment are significant challenges for mothers of children with disabilities, but they find strength in spirituality. spiritual belief systems and collaboration with community and spiritual leaders are advocated for ongoing communal support for mothers of children with disabilities. an inclusive, authentic intersectoral collaboration is needed to enhance caregiving capacity for mothers of children with disabilities. keywords: children with disabilities; mothers; caregiving; community; families. introduction globally, caregivers of children with disabilities (cwds) face many challenges. studies conducted in various parts of the world reflect this narrative (bahry et al. 2019; dababnah et al. 2018; pretorius & steadman 2018). lower-to-middle income countries (lmics) face even more unique, contextually influenced challenges in terms of access to resources and holistic support for caregiving for families of cwds (pretorius & steadman 2018; zuurmond et al. 2019). family caregivers comprise relatives, friends, partners or neighbours who provide assistance, typically unpaid, to someone who has limitations in their physical, mental or cognitive functioning (schulz et al. 2020:1). family caregivers provide holistic care — emotional, financial, physical and spiritual care, often forming an entire social system that supports their loved ones with a disability, playing a crucial support role (schultz et al. 2020; swartz & collins 2019). studies in various parts of the globe reflect that women and mothers of cwd experience more care challenges (masefield et al. 2022; mc aulliffe et al. 2018; schultz et al. 2020; zahaika et al. 2021), also revealing how the female gender is a risk factor within caregiving (schultz et al. 2020). therefore, being a female caregiver, can be a challenge, in and of itself, to the care giving experience. furthermore, certain cultural influences and beliefs perpetuate stigma and blame, on the mothers of cwd (öztürk & alemdar 2023; sevgi & ayran 2024; sibel et al. 2012; tsai et al. 2018). in many sub-saharan african contexts, poverty, disability stigma (adugna et al. 2020; smythe et al. 2022) the absence of social support (hussain & raihan 2022), socioeconomic challenges (brewer 2018; kamiya 2021; njoroge & murenga 2023), challenges to access to healthcare services (asa et al. 2021; adugna et al. 2020; khan et al. 2020; kwabena 2021; schichlindi et al. 2020) are some of the challenges faced by mothers of cwd within the region. despite these challenges, studies show that some mothers of cwd are developing skills to become activists, support each other and fight for the interests of their children (ebrahim et al. 2014; hepperlen et al. 2021). alternatively, the capacity to advocate and access resources is often influenced by the context within which the mothers reside. challenges and enablers of caregiving within the south african context in south africa, the development of inclusive policies, public disability awareness and sensitivity training has supported (adugna et al. 2020) and contributed to a positive experience of caregiving generally, but with specific differences based on context. eliciting narratives of caregiving experiences of mothers of cwd from all contexts is relevant for targeted interventions and support systems that are contextually relevant for addressing their unique challenges, as well as identifying suitable support. while the experiences of mothers of cwd from many regions of the world have been researched as presented here, this is not the same within the african continent, and even less so within peri-urban south african communities. this above-stated situation is exacerbated by the residue of south africa’s apartheid history of racialised healthcare provision; therefore, access to resources that support caregiving has been a challenge within certain contexts, for instance the rural and peri-urban contexts, where poverty is rife (van der mark et al. 2019b). studies on disability experiences have been conducted in other peri-urban areas of cape town, but the researcher has not found any study that explored disability and caregiving in lwandle. therefore, this study aims to contribute to the knowledge on how mothers of cwd within the peri-urban contexts of lwandle experience caregiving for their cwd. this is aimed at hopefully supporting targeted support for these mothers. relatedly, the study will also contribute to the discourse of caregiving within africa, from the viewpoint of mothers of cwd within a peri-urban setting. methods the study setting and methodology is presented in this section. setting lwandle, a township (peri-urban area) in strand, is in the western cape province of south africa. this area has different types of mainly low cost housing, including government-funded reconstruction and development programme (rdp) houses, and also shack dwellings. the ikwezi clinic is the nearest health facility. there are several churches, crèches, schools and informal businesses in this township, as well as one police station. at the beginning of the 21st century, lwandle was identified by the well-known lwandle migrant museum — a structure of significance. the museum highlights the experiences of the past migrant labour system and hostel life (murray et al. 2013), which today still has implications for the people living there. the community health workers (chws) of masincedane community service (a non-profit organisation) routinely visit mothers of cwds in lwandle to provide support. the idea for this study emanated from conversations held with one of the mother who is a healthcare professional and who managed health programmes in the community. one of the authors is also a mother of a child with a disability, hence the personal interest in this study, beyond the professional interest. research design a qualitative study was conducted using in-depth interviews, which were analysed thematically. the use of a qualitative methodology assisted the researcher to elicit relevant narratives of the experiences of seeking healthcare access for their children from the participants (creswell & poth 2018). the study population consisted of mothers of cwds who access healthcare services by masincedane community service in lwandle. the participants were recruited with the assistance of chws. consent forms were downloaded from the university’s human research ethics website in english, isixhosa and afrikaans; thereafter, information specific to the study was included and disseminated accordingly. data gathering six mothers of cwds were interviewed. four mothers were isixhosa speaking mothers. all the mothers were living with their children, mostly relying on the grant they received for their children from the government. only one mother was employed on a part-time basis, and the majority of the other mothers were single mothers, one mother was married and one was a widow. semi-structured face-to-face interviews were conducted in the homes of the participants. this was the preferred mode of data gathering for most of the participants. the study population consisted of mothers of cwd who had access to healthcare services provided by masincedane community service in lwandle, as the place where the research was located. this research was only open to participants who received services from masincedane community service. other potential participants in the area who did not receive services by this npo were excluded. the participants were recruited with the assistance of chws working for masincedane community service in lwandle. the chws were made aware of the study, after gaining permission from this npo. with home visits performed routinely in the community, the study population was informed by the chws who were known to them about the study and of these six were willing to participate in the study. the initial aim was 10 participants, but consent was received from only 6 mothers; therefore, we went with these 6 mothers who were available and willing to participate. in addition, since the focus of the study was their subjective experience of this phenomena, we were satisfied that saturation was achieved with the 6 participants. table 1 presents the demographics of the selected participants. table 1: participants’ demographics. the pilot interview was carried out to further scrutinise the interview tool and ensure that it supports the study intent and focus. after gaining consent, the participants were contacted in order to schedule the interviews in advance at a time and place of their choice with the assistance of the chw. one participant chose to do the interview at the npo office, while other participants chose to do the interview in their homes. thematic analysis of data was carried out (braun & clarke 2006; creswell & poth 2018; maguire & delahunt 2017) within six, step-by-step procedure for data analysis (nowell 2017). firstly, the researcher cleaned the transcribed data by deleting all irrelevant background sounds during interview as data were transcribed verbatim and read the transcripts while listening to the recording to ensure that nothing was left out. secondly, the researcher began to identify units of meaning within the transcribed data that respond to the study focus and lifted them out of the transcripts onto an excel spreadsheet. thirdly, units of meaning were categorised and given initial codes. corresponding quotes from the data where the units of meaning were lifted, were colour-coded for reference. fourthly, the researcher thereafter analysed all initial recurrent codes from the transcripts and re-grouped them accordingly into sub-themes under appropriate columns. after further assessing the sub-themes, and ongoing immersion with the data, emerging patterns were identified and grouped into themes. all emerging themes were reviewed again, identifying all outliers in the data, which were re-analysed and either included in an existing theme or new themes were generated as needed. this was done for each transcript first, and then across all transcripts. following the aforesaid, all final themes were defined and agreed upon through a debriefing process. to ensure rich data, the researcher included direct quotes from the participants in the findings to provide evidence from the data. the study outcomes were written up in a relevant manner, with the supporting quotes. ethical considerations permission for this study was granted by the health research ethics committee at stellenbosch university on 28 april 2022 with the ethical clearance number s21/11/247. participation in the study was voluntary and participants gave informed consent before data collection began. the form was explained to the participants and their questions were addressed by the researcher. participants were assured of confidentiality of their identity and that pseudonyms would be used when writing the study. the study has been disseminated to the participants, masincedane community service staff and the clinics involved. findings the study’s findings reveal several challenges and facilitators to caregiving that mothers of cwds within this study context experience. we begin with the challenges (table 2). table 2: challenges and enablers to caregiving for mothers of children with disabilities. challenges to caregiving for mothers of cwds living in the water this theme speaks to the unfavourable living conditions of these mothers with their children, with the sub-theme on poor living conditions. poor living conditions an example of these harsh conditions is the challenge to gain even the most basic amenities such as adequate housing for them and their children. they are unable to even maintain their shacks, which often leak when it rains. one mother captured this feeling very well by stating that she often feels like she is living in the water. this lack of resources has implications for their capacity to give adequate care to their cwd: ‘and i need, uh, the house. the house, you see, because i’m staying in the water. the water is coming. the water even now it’s wet. the water comes inside.’ (ina) ‘like when it rains, i do not feel right because i get rain, i do not have someone that can help me or someone i can go to when in need of something at home. i just stay at home. those are the things that i deal with.’ (sophi) ‘like now that it’s going to rain, i do not have a place inside or covered area like a veranda where i can hang his [cwd] clothes and so then he runs out of clothes to wear.’ (sophi) the poor living conditions put a lot of stress on the mothers, as it also impedes their capacity to plan and function within their own homes. the lack of resource is a constant challenge to caregiving, and often keeps them inside, in further isolation, which worsens the challenges. alone and isolated this theme expresses the experience of a lack of support for these mothers nurturing their cwds and how they feel isolated and lonely in the community. a sense of abandonment this sub-theme recognises the lonely journey most of the mothers as primary care-givers face with their children. the mothers expressed feeling abandoned by family, with only themselves to rely on: ‘i have not received any help from the family. i do everything myself.’ (pat) ‘so, there is no one who helps me. no one like, when i do not have money to buy her nappies, that can help me. so, i end up going to loan sharks [high interest lenders] so that i can get her nappies because her nappies are expensive, and they are only 40 inside. so those are the challenges i experience.’ (sophi) ‘one day i will die and i need to know what will happen with my children. because i do not have family, no mother, aunt, there is no one helping me. my problem is my problem, and it ends there. only me know what to do with it because now i live with my children. even the family from my husband’s side do not care for me. because only my husband loved me in his family.’ (bea) stigmatisation the mothers also experience stigma and negative attitudes from the community members causing further isolation, as highlighted in the following narrative. the attitudes of their neighbours against their cwd increased their burden of care: ‘i am happy, but my husband is not happy.’ (hayli) ‘there are times where there are challenges when the neighbours get to quarrel then you get people insulting you about your disabled child.’ (maria) the next theme that emerged strongly was related to financial struggles that the mothers face. financial challenges financial challenges were narrated across all participants. one mother explained how trying to meet the financial demands of raising her child with a disability while battling with the cost of her own health condition is very challenging: ‘i am a mother who is not well, i take high blood pressure, arthritis and diabetes tablets. so i do not work, i am always here at home. so x relies on the r450 child support grant. we also depend on that here at home. from that we have to eat, i buy him clothes, items for school.’ (pat) two of the mothers described how their financial struggles impact healthcare access for their children, because of the cost of transportation. they often rely on the disability grant they receive from the government or save money to be able to access healthcare: ‘when i need to go the clinic, i also struggle there. i need to save money, for instance, i cannot take her to the clinic on the wheelchair. it is far. we use nomzamo clinic. so i need to save money for the taxi fare.’ (maria) ‘my challenge is that, when i take her to the hospital or clinic, i need to drive her. i do not have transport to take her because the wheelchair that she has does not fit in the taxi. i have to uber when i need to give her some rest, i then need to uber for a car that can fit in the wheelchair then going to the clinic i pay. also when we get there, it [uber] needs to wait for us. i am also struggling because i am not working. i have no source of income except her grant and a grant that i made for having her.’ (sophi) the health challenges of these mothers accompanied by financial constraints and transport issues are all highlighted within these findings. these challenges all impact on their capacity to provide the care needed for their cwd. enablers of caregiving this theme highlights the factors that support caregiving for the mothers of cwds. spiritual belief systems the mothers described how their faith made a difference in their lives in these challenging situations. finding practical support spirituality for half of the mothers in this study was a supportive and a positive factor in their lives. it was not only about the internal strength but also about finding practical help within the faith community. one mother stated how someone at church was able to give her a helpful referral: ‘i got in contact with a doctor at nomzamo through a friend i attended church with who advised that i take him to that doctor. one of the ears could not hear at all, the other could partly hear. now he was already older about 11–12 years old and was able to tell that this side mama cannot hear and this side i can hear a little bit. so, at nomzamo they gave me a letter to tygerberg [hospital] where we got a date booked to take him there. at tygerberg they then did lots of tests and confirmed that one ear cannot hear and the other partly hears.’ (pat) spirituality as empowerment and consolation spirituality is seen as an encouragement, so that they do not give up and continue to care for their children. however, even the capacity to always attend church is affected by the need to constantly tend to their child. one of the mother stated the following in this context: ‘yes, i get to see and feel encouraged by prayer.’ (maria) ‘i used to go with her when she was still small, put her on my back and just sit with her and just sing at church. so now that she’s grown, i do not afford to go because when i leave her on this wheelchair, i have to stay an hour and keep checking how she’s doing because there is no older person.’ (sophi) in addition, the presence of helpful healthcare professionals within the clinic space was a strong facilitator to caregiving. supportive attitudes this theme speaks of the benefits of having a supportive community that contributes to their capacity to give care to their children. helpful healthcare professionals this sub-theme showcases the importance of healthcare professionals in the lives of mothers of cwds, and how the assistance of these professionals impacts on the lives of the mothers and their capacity to care for their children. the mothers highlight how the positive attitude of the physiotherapist at the clinic they attend meant that they were able to receive help immediately when they arrived at the clinic. this help and kindness are deeply appreciated by the mothers: ‘yes, i get help immediately as i usually go to the physio. like when i need to change the chair.’ (sophi) ‘recently i like nomzamo clinic. i never got any problem at nomzamo clinic. i never had any query. when i get there, i get attended to. i wait like everyone does until i get called and i get satisfied. there is nothing, i can complain about.’ (bea) the value of the community health worker in accessing healthcare for their children was highlighted in the following dialogue: ‘she’s a nice lady. uh, every time if i have a problem, she helped me. she asked me, uh, x, you need something? i said yes. i need something. i have a problem. she said, okay, okay, it’s fine. i’m gonna help you.’ (ina) supportive family and helpful neighbours made a positive difference, as discussed next. helpful neighbours and supportive family members two participants had positive experiences of family members who played an important role in their lives by supporting them to be able to provide adequate care for their cwds. the following participant has family members who assist and support her in caring for her child with cerebral palsy. this support is an enabling factor influencing her provision of care to her cwd: ‘ok my family helps at times when i need to go somewhere then someone would come and help with x. also with feeding.’ (maria) another example is the participant who confirmed financial assistance from her sister: ‘yes, my sister, is working by, uh, staying there by free state. she is sending me [money].’ (ina) the neighbour of a participant assists and enables her with the storage of her food for her family: ‘i do not have a fridge and the microwave since january that they broke. i do not have any other way. when i buy meat, i ask the next-door neighbour to keep for us. it’s not easy. my problem is that, i do not like that people know about what happens in our home. my fridge is a cupboard it’s not a lie.’ (bea) this theme highlights the supportive role family and neighbours can play as important enablers of caregiving for mothers of cwds in the community. discussion the specific influences of the caregiving experience that emanated from the study for mothers of cwds are presented and discussed is this section. challenges to caregiving inherent challenges there are mental and inherent factors that influence caregiving for mothers of cwds. these are factors immanent in individuals, their mindsets, and the personal challenges that they have which may act as a challenge to caregiving. these factors form part of the social determinants of health. in 2001, the world health organization (who) highlighted 10 social co-determinants for health, namely: class; stress; early life; social exclusion; work; unemployment; social support; addiction; food; and transport (marmot & wilkonson 2005 in mc nair 2017). these overlapping categories determine one’s health and are issues of human rights. some inherent factors are enablers, while some are challenges to caregiving. the mothers carry a great deal of anxiety about their home and family, which subsequently impacts their own health and well-being (gilson et al. 2018). concurring with the study outcomes, literature highlights the high levels of stress, anxiety and depression caregivers of cwds experience when compared to other mothers of ordinary developing children (masefield et al. 2022). mothers spend a significant amount of time on caregiving and enabling the participation of their children in life on a daily basis (harris et al. 2022). caring for a child with special needs is very demanding for the parents (rani, gupta & anand 2022), leaving them constantly exhausted (ndirangu & midigo 2019). caregivers often report that less time is spent on self-care, relaxation, sleep and access to healthcare for themselves (harris et al. 2022). the mothers in this study often focus on caregiving as their priority, while neglecting themselves. the flip side of ignoring their own need for support is that this will eventually impact on their own capacity to care for their children. the demands placed on these mothers make them quite vulnerable (gilson et al. 2018). mothers of cwds will benefit from mental health literacy training that will facilitate their caregiving process (gilson et al. 2018) by giving them the required skills to cope with the great demand caregiving puts on them. financial constraints and unemployment the mothers of cwds are financially constrained constantly as it costs more to care for a child with a disability, than a regular child (jansen-van vuuren et al. 2022). social grants they receive are not enough, and they have to go to loan sharks and have to borrow money at exorbitant interest rates, which means that some of them may remain so indebted that they are unable to afford transport to take themselves and their children to the clinics. research shows that because of the amount of time given to take care of their child with a disability, these mothers struggle to find gainful employment, as they cannot afford daycare. scott (2018), argues for a reorganisation of the workspace, and current understanding of work, to include and accommodate the specific challenges of caregivers, especially mothers of cwd. in this context, there is a need to rethink of the world of work. to create spaces for informal or negotiated, flexible employment opportunities, and skills development to support the capacity of these mothers to be able to work and earn an income, while taking care of their cwds. stigma is still a dominant challenge the study found that stigma remains one of the biggest challenges for mothers of cwds in africa (jansen-van vuuren et al. 2022). stigma comes from family, healthcare professionals, the community among others. stigma is a complex phenomenon, which coupled with negative attitudes, can lead to social and economic exclusion (smythe, adelson & polack 2020). the authors categorise stigma into ‘anticipated stigma’ (the expectation of encountering stigma), ‘internalised (or self) stigma’ (a sense of shame, guilt and fear) and ‘experienced stigma’ (discrimination). sources of stigma can include the community, health staff, teachers, laws and policies, and this includes ‘enacted stigma’ (which refers to discrimination) and ‘negative attitudes and prejudice’ perpetuated by others, social processes or structures (smythe et al. 2020:509). the study outcomes reported on most types of above-stated stigmas identified, aside from the enacted stigma, as there wasn’t a focus on policies. participants in this study experienced ‘anticipated stigma’ because they often expected to encounter stigma, and one can see how their narratives of ‘experienced stigma’ (discrimination), within their immediate environments could inform these expectations. literature shows that stigma is still one of the biggest influencers of the disability experience within the continent, and often leading to internalised (or self) stigma’ (a sense of shame, guilt and fear) (smythe et al. 2020). it is, however, noteworthy that the mothers here, did not display a sense of shame or guilt, but rather fear. fear of the unknown, fear for the future of their children, after they have passed. rather than displaying shame or guilt, some of them seemed to have accepted their situation, and rather hoped for some helpful intervention to be able to take care of their children. this acceptance may be informed by their personal spiritual belief systems. a general sense of isolation and the lack of personal and/or familial support systems participants refer to staying indoors to avoid dealing with the negative attitudes of neighbours, and the insults and stigmatisation of their cwds. there is often a sense of abandonment from family as breakdown of the family is very common and isolation from friends and family is experienced (masefield 2022). mothers of cwds experience spousal abuse, with high absenteeism of fathers in their lives, leaving the mothers to become sole carers of their cwds (mc aulliffe et al. 2018). there is a gendered view to the discrimination that these mothers face, that is informed by some pervasive community culture and negative attitudes (jansen-van vuuren et al. 2021; van der mark et al. 2019b). mothers are often blamed for the disability their child have (bani & lach 2024). the dominant belief system of disability within the african context is still often linked to spiritual and socio-cultural issues, and the mother is often blamed for the situation (chirwa 2017). this situation informs issues of negative attitudes and subsequent abandonment that follows, facilitating a lack of support and disruption in their lives that often impact on their caregiving capacity or quality of care they give to their children. factors supporting healthcare access spirituality and personal beliefs a scoping review of 15 african countries, related to the factors that impact the quality of life of families of cwds within the african context, revealed that there is a strong influence of spirituality as both a positive and negative facilitator of well-being for these families (jansen-van vuuren et al. 2022). the study’s outcomes posit spirituality as a positive factor. mothers who participated in this study say spirituality supports their well-being. spirituality plays a significant role in the way mothers of cwds experience the disability of their child. being aware of, and inculcating the spiritual paradigm, while utilising effective communication methods is vital to the mothers, will help them to support their children more effectively (smith & blamires 2022). mothers of cwds highlight the role of spirituality in providing them with hope, solace and confidence through the challenges (yilmaz et al. 2019). in the african context, spirituality is perceived to be crucial to improving the quality of life of cwds and their families (jansen van vuuren et al. 2021). spirituality provides purpose (ohajunwa & mji 2018) builds internal support and strength for these mothers to continue with their care duties for their children, despite the challenges experienced. inclusive healthcare practices the inclusive healthcare practices and helpful professionals have great significance for the experience of well-being in the lives cwd and their mothers (yu et al. 2024). the implementation of inclusive healthcare by health professionals and managers potentially decreases health inequalities. inclusive health practices do not only refer to the healthcare professional in the facilities alone but also include the chws who often come to the homes to administer healthcare support. parents of cwds identify home and community based services (hcbs) as important to the well-being of their children (bruton et al. 2024). the hcbs bring healthcare support closer to the mothers, especially as the mothers’ struggle with financial constraints and stigmatisation of their children, rather choosing sometimes, to stay indoors in avoidance. research from uganda equally reflects the use of healthcare planners in prioritising at community and health facility levels for the improvement of prevention, management and rehabilitation programmes for cwds (katongole 2024). social workers are also encouraged to integrate their services with health professionals in order to improve care for mothers, and to work closely with policymakers to improve support provided to families with special needs (jafree & burhan 2020). healthcare services as implemented by npos such as masincedane community service are also important in the community to support mothers of cwd in their bid to provide the best caregiving to their cwds. conclusion mothers of cwds are often the primary caregivers or the only caregiver, and certain factors influence their capacity to care for their cwd; the main influencers being poverty and stigma as challenges, and spirituality and inclusive and helpful healthcare professionals as a support system. although the mothers of cwds in this study struggled with poverty and financial constraints, the sense of isolation and abandonment caused by stigmatisation is clearly evident. some mothers stay indoors to avoid dealing with the negative attitudes of neighbours. hence, disability advocacy is encouraged to continue educating the community about the value of people with disabilities and supporting the rights of cwds (hepperlen et al. 2021). one can safely argue that any support given to mothers of cwds will ultimately enhance their capacity to care for their children. the mothers carry a lot of anxiety and worry about their children, which creates some inherent challenges that can impact their ability to support their children’s healthcare needs. one recommended way to support mothers is the utilisation of their personal spiritual belief systems to create a community of support. involving spiritual and religious leaderships in initiatives that focus on non-discrimination and disability-related support will be helpful. a more inclusive community would reduce their sense of isolation and abandonment, enabling them further towards caregiving for their children. we also advocate for the healthcare system to implement a dual support system that supports mothers of cwds as well as their children. the focus must be on providing optimal healthcare for mothers together with their cwds. it should be priority to have a dual care programme that simultaneously assesses the mental health of mothers at community healthcare facilities, whenever they seek medical care for their children. this is because of the heavy burden of stress they carry. the role of chws in providing support and education to the mothers of cwds at their homes on a regular basis is very important to address the isolation and stigma these mothers face in the community. limitations this research is limited to a small geographical area of lwandle. therefore, the findings may not be transferable to other populations from different contexts. another limitation is that this research was only open to participants who received services from masincedane community service. other potential participants in the area who did not receive services from this npo were thus excluded. because of this being a master’s thesis, the scope of the study and time constraints meant that only a small sample of participants could take part in this study. acknowledgements competing interests the authors have reported that they received funding from south african medical research council self-initiated research grants which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions m.a.t. conceptualised the study and article and conducted the data gathering, data analysis and the writing of the article. c.o.o. contributed to the conceptualisation of the study and article, data analysis, supervision of the research investigation and the writing of the article. funding information this research was funded by the south african medical research council self-initiated research. data availability the data that support the findings of this study are available on reasonable request from the author, c.o.o. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references adugna, m.b., nabbouh, f., shehata, s. & ghahari, s., 2020, ‘barriers and facilitators to healthcare access for children with disabilities in low and middle income 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research & design journal 17(2), 309–325. https://doi.org/10.1177/19375867231218035 zahaika, d., daraweesh, d., shqerat, s., arameen, d. & halaweh, h., 2021, ‘challenges facing family caregivers of children with disabilities during covid-19 pandemic in palestine’, journal of primary care & community health 12, 21501327211043039. https://doi.org/10.1177/21501327211043039 zuurmond, m., nyante, g., baltussen, m., seeley, j., abanga, j., shakespeare, t. et al., 2019, ‘a support programme for caregivers of children with disabilities in ghana: understanding the impact on the wellbeing of caregivers’, child: care, health and development 45(1), 45–53. https://doi.org/10.1111/cch.12618 abstract introduction method results findings and discussion conclusion recommendations acknowledgements references about the author(s) mary m. makgato department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa monicca leseyane-kgari department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa madoda cekiso department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa itani p. mandende department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa rose masha department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa citation makgato, m.m., leseyane-kgari, m., cekiso, m., mandende, i.p. & masha, r., 2022, ‘evaluating the awareness and knowledge of dyslexia among primary school teachers in tshwane district, south africa’, african journal of disability 11(0), a807. https://doi.org/10.4102/ajod.v11i0.807 original research evaluating the awareness and knowledge of dyslexia among primary school teachers in tshwane district, south africa mary m. makgato, monicca leseyane-kgari, madoda cekiso, itani p. mandende, rose masha received: 06 oct. 2020; accepted: 05 feb. 2022; published: 28 apr. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: many developed countries have made rapid strides in addressing issues related to dyslexia but in the developing countries like south africa, it has not received adequate attention. objectives: the study therefore sought to evaluate awareness and knowledge of dyslexia among primary school teachers working in the government sector. methods: a phenomenological design was used and the study followed a mixed methods approach. the sample included 30 purposively selected primary school teachers. a questionnaire that consisted of true and false questions, closed-ended questions and open-ended questions was used to collect data. spss version 22 and excel data analyser 4 were used to analyse the quantitative data whereas the qualitative data was analysed thematically. results: the results indicated that the primary school teachers had a basic awareness and knowledge of dyslexia. many of them were found to be using limited strategies in order to teach learners with dyslexia in their classrooms. conclusion: based on the findings, recommendations such as early diagnoses through testing, parental involvement, conducive learning environment and teachers’ professional development regarding dyslexia were made. keywords: dyslexia; reading; dyslexic learner; reading instruction; teacher knowledge. introduction dyslexia is a common term which refers to specific reading difficulties which can be classified as a specific learning disorder (sld) (according to the american psychiatric association 2013). american psychiatric association considers sld to be a type of neurodevelopmental disorder that impedes the ability to learn or use specific academic skills such as reading, writing or arithmetic. however, an sld in reading is still commonly referred to as dyslexia in the literature. as such, the authors in this article make reference to dyslexia instead of sld. dyslexia is a specific neurobiological disorder characterised by difficulties in reading fluency, decoding and spelling skills resulting from a deficit in the phonological component of a language despite having received adequate instruction and having average intellectual level (lonigan et al. 2013). in addition, fawcett, nicolson and dean (1996) point out that: [c]hildren with dyslexia often have associated deficits in certain related domains such as oral language acquisition, writing abilities, mathematical abilities, motor coordination, postural stability and dexterity, temporal orientation, visuospatial abilities and dexterity, and attention abilities. (p. 273) previous studies indicated that dyslexia is the most common learning disorder in children, but it has not received adequate attention in developing countries (shetty & sanjeev rai 2014). this view is worrying in a south african context where the white paper 6 (department of education 2001) seeks to establish ‘an education and training system that ensures that all learners with and without disabilities, pursue their learning potential to the fullest’. because south africa has introduced the policy of inclusive education, our main concern is how far the government has gone in developing public school teachers to cope with a diversity of learning and teaching to accommodate learners with learning disabilities such as dyslexia. according to artiles, dorn and christensen (2006:65), inclusive education is understood to refer to the placement of learners with special educational needs in mainstream settings, along with other learners without learning challenges. however, in the south african context, inclusive education refers to the capacity of ordinary local schools and early childhood developmental centres to respond to the needs of all learners (booth 2015:2). in addition, mcleskey et al. (2004) are of the view that inclusive education establishes acceptable educational practices in general education schools by providing a range of educational services to assist all learners with special needs to learn to their fullest potential. in order to achieve this goal, teacher training for primary school teachers becomes paramount. swanson and hsieh (2009:1362) are of the view that primary school teachers play ‘an important role in the early identification of learners with dyslexia, and their awareness on dyslexia would be of assistance in the management of learners with dyslexia’. therefore, teachers’ awareness and knowledge of dyslexia is contextually significant because any challenge with reading is likely to negatively affect the learner’s academic success. there is considerable research supporting the claim that south africa has a reading crisis (howie et al. 2011; rule & land 2017; spaull 2016; willenberg 2018). for example, the poor performance by south african grade 6 learners in the southern and eastern africa consortium for monitoring education quality (sacmeq) (2007) is a cause for serious concern. southern and eastern africa consortium for monitoring education quality is a cross-national initiative consisting of 14 countries in southern and eastern africa and it tests the numeracy and literacy skills of grade 6 learners in each of the participating countries. the results of the sacmeq study (2007) show that of the 15 countries that participated, south africa came 10th in reading. this shows that south africa was lagging behind much poorer african countries such as tanzania and zimbabwe (rule & land 2017; van der berg 2007). however, the focus of this study is on dyslexia as it pertains to reading and not mathematics. the recent results of the 2016 progress in international reading literacy study (pirls) do not show any improvement as far as the reading ability of grade 4 south african learners is concerned. the results indicate that 8 out of 10 south african grade 4 learners cannot read. for example, south african grade 4 learners could not locate and retrieve explicitly stated information or make straightforward inferences about events and reasons for actions (spaull 2016; willenberg 2018). although the authors of this study do not have any scholarly evidence linking the reading crisis in south africa to dyslexia as a challenge, most international bodies such as the international dyslexia association and the british dyslexia association claim that about 10% to 15% of the population is affected by dyslexia. this claim is supported by knight (2018) who declares that an estimated 5% to 10% of the worldwide population is said to have dyslexia and, accordingly, it is important that teachers understand what dyslexia is and how it affects their learners. these international bodies further claim that many more learners with dyslexia are not getting the help they need and worst of it all are not assessed by schools. the situation is made worse by the claim made by khaliq, ramsan and aslam (2017:2) that ‘too often, learners with dyslexia remain undiagnosed throughout their school careers, labelled instead as lazy or disruptive learners’. khaliq et al. (2017:3) further state that such ‘learners face the misery of failure, depression and an increased risk of suicide, delinquency and reoffending’. similarly, delany (2017:97) states, ‘many students in the mainstream schools do not receive optimum academic support and, as a result, struggle to keep up with their non-dyslexic peers’. in the south african context, the authors have observed that many learners who have reading challenges have not been assessed for dyslexia. abd rauf et al. (2018) as well as silva do nascimento, carneiro rosal and manchester de queiroge (2018) allude to the fact that learners with dyslexia need specialised teachers. the important question to ask is whether such specialised teachers exist in south africa. hence the authors decided to investigate primary school teachers’ awareness and knowledge of dyslexia. this is an important question to as against the background that if not diagnosed and relevant interventions provided accordingly at the early levels of schooling, dyslexia is likely to pose reading challenges to learners (nalavany, carawan & brown 2011). as already indicated above, despite dyslexia being recognised as a major educational challenge, it has not received sufficient support in developing countries like south africa (shetty & sanjeev rai 2014). few studies that have been conducted in this regard reveal that teachers held a basic understanding of dyslexia and lacked the knowledge of the biological and cognitive aspects of dyslexia (knight 2018; shari & narasimha 2015). subsequently, knight (2018) argues that: [e]vidence-based teacher training, which informs teachers of the up-to-date research on the biological, cognitive, and behavioural aspects of dyslexia, is essential to combat misconceptions and ensure that teachers have more nuanced and informed understandings of dyslexia. (p. 207) khaliq et al. (2017) conducted a study in pakistan and the findings revealed that teachers of the elementary schools from lahore were not aware of the term dyslexia and only few of them were able to identify and manage it in their classrooms. this is a serious situation because teachers are supposed to be trained to screen for dyslexia so that appropriate referrals can be made. teachers also play a significant role in early identification of such disorders in children. although many studies have been conducted in the developed countries such as united kingdom (uk) and united states of america (usa), which have policies on dyslexia, few studies have been conducted in south africa on the learners with dyslexia. the most similar study conducted in a south african context was conducted by thompson (2013). the aim of thompson’s study was to ‘assess teachers’ awareness levels of dyslexia, their perceptions of their ability to identify and manage dyslexia, and their perceptions of the adequacy of their pre-service and in-service training in dyslexia’. the results of the study indicated that teachers had adequate knowledge of dyslexia, and they believed they were able to identify and manage dyslexia and that they received little or no pre-service and in-service training in dyslexia. the authors of this article found contradictions in the findings of thompson’s study. for example, if teachers believed that they received little or no pre-service and in-service training in dyslexia, then, on what academic grounds do they claim to have enough knowledge of dyslexia and able to identify and manage learners with dyslexia? thompson’s study does not provide answers in this regard. in the current study, there is a little difference between awareness and knowledge. on the one hand, awareness refers to perceiving, feeling or being conscious of events, thoughts, emotions or sensory patterns while on the other hand, knowledge refers to facts, information and skills acquired through experience or education. we believe that awareness leads to knowledge or that there is no knowledge without awareness. subsequently, the current study sought to provide answers to the following questions: research question 1: what is the public primary school teachers’ level of awareness of the concept ‘dyslexia’? research question 2: what is the teachers’ understanding of limitations brought about by dyslexia in teaching and learning? research question 3: how do teachers navigate teaching and learning within reading difficulties brought about by dyslexia? research question 4: to what extent are the teachers interested in dyslexia training? what is dyslexia? according to mattke (2021), dyslexia is a learning disorder that involves difficulty in reading due to problems in identifying speech sounds and learning how they relate to letters and words (decoding). the international dyslexia association and national institutes of child health and human development offers a current definition of dyslexia as a specific learning disability that is neurological in origin. the international dyslexia association and national institutes of child health and human development argue that dyslexia is not a disorder but a sld. many authors come to a consensus that dyslexia is linked to genes, which is why the condition often runs in families (international dyslexia association and national institutes of child health and human development 2017; shroff 2021; the international dyslexia association n.d.). shroff (2017) is of the view that one is likely to have dyslexia if one’s other family members have it. it appears to be genetic and affects how the brain processes reading and language. the clinic guide to raising a healthy child (2017) declares that the symptoms of some early clues of dyslexia may include late talking, learning new words slowly, challenges in forming sounds correctly, such as, reversing sounds alike, challenges in remembering or naming letters, numbers and colours, learning nursery rhymes as well as playing rhyme games. according to the international dyslexia association (n.d.), diagnostic evaluations of dyslexia often cover background information, including family history and early development, intelligence, oral language skills, word recognition, fluency skills, reading comprehension, vocabulary knowledge, decoding and phonological processing. shroff (2021) states that the brain of learners with dyslexia has a hard time connecting letters to the sounds they make, and then blending those sounds into words. according to shroff, to someone with dyslexia, the word ‘cat’ might read as ‘tac’ and because of these mix-ups, reading can be a slow and difficult process. the importance of teacher awareness and knowledge of dyslexia in many countries, the role and functioning of schools are changing and so is what is expected of teachers (davis & watson 2000). in this regard, south africa is no exception, especially with the introduction of inclusive education policy. in 2001, south africa developed inclusive education in line with international trends and the social rights discourse. as a result, the policy document, education white paper no: 6 (2001) was established. this outlined and embraced the government’s obligation to provide a supportive inclusive education environment for learners with special needs (sukhraj 2006). in the context of this study, inclusion is broadly defined as the process through which learners who might have previously been taught in a separate special education system due to learning challenges are now taught in an ordinary classroom. despite the adoption of an inclusive education policy in south africa, peters (2007) believes that learners with dyslexia continue to be vulnerable. donohue and bornman (2014) concluded that the implementation challenges of inclusive education are attributable to two main factors, namely, the apparent lack of clarity in the policy and various issues around the poor implementation of the policy. at the heart of the poor implementation of inclusive education is the lack of teachers’ skills and knowledge in differentiating the curriculum to address a wide range of learning needed (donohue & bornman 2014). however, there are contradictions in the literature concerning the implementation efforts of inclusive education in south africa. for example, adewumi, mosito and agosto (2019) conducted a study on the experiences of teachers in implementing inclusion of learners with special education needs in fort beaufort district (south africa). their findings revealed that teachers accommodated learners with special education needs like dyslexia, despite the fact that some of them did not have the needed qualifications or training on learners with special education needs. despite the contradictions in the findings, consensus is that there is a need to develop teachers in ordinary schools so that they can cope with the learners with dyslexia in their classrooms. supporting the idea of teacher development in south africa, lessing and de witt (2007) point out that since 1994, a year in which south africa transitioned from the system of apartheid to one of democracy, major changes have occurred in education policy. they further state that teachers have been challenged to attend to learners with barriers to learning in an inclusive classroom. according to coetzer (2001), inclusive education, will only be effective if teachers are adequately prepared and equipped by means of professional development. anderson, case and lam (2001) believe that during the moments of change in an education system, it is necessary to help teachers update their knowledge and skills to deal with change, on the one hand, and manage human resources better, on the other hand. however, findings of studies conducted by prinsloo (2001) and peters (2007) revealed that despite the introduction of an inclusive education policy in south africa, learners with disabilities such as dyslexia remain vulnerable. it has already been mentioned hitherto that many studies on learners with dyslexia have been conducted in developed countries like the uk and the usa. subsequently, such countries have policies on dyslexia. few studies have been conducted in the developing countries like south africa on learners with dyslexia. therefore, the authors separate reporting literature from developed and developing countries. literature on dyslexia in the developed countries reveals that such countries are at an advanced stage about addressing dyslexia. for example, the department for education and skills (2004) in the uk developed a framework for understanding dyslexia. this framework addressed the definition of dyslexia, theories of dyslexia, approaches, and programmes used by specialists. in addition to the foregoing, several studies have examined teacher knowledge and awareness of dyslexia and generally found weaknesses in some areas of awareness and knowledge and strength in others (elias 2014; furnham 2013; knight 2018). these studies come to a consensus that teachers’ awareness and knowledge of dyslexia is significant in developed countries for them to be able to help learners with dyslexia most effectively by implementing the best methods to help these learners. according to dyslexic action (2012:7), teachers who lack understanding of the nature of dyslexia run the risk of being unhelpful and use damaging comments that have long-lasting detrimental effects to the learners with dyslexia. it is thus important that teachers and schools have adequate understanding of dyslexia, as this understanding is likely to affect teachers’ practice. knight (2018) is of the view that teachers’ awareness and knowledge about dyslexia is significant so that teachers could identify those learners at risk and can develop relevant interventions. the results of a study conducted by furnham (2013) on teachers’ understanding of dyslexia revealed that teachers were unsure about the neurobiological aspects of dyslexia. in a study conducted by knight (2018), it was identified that there were 12 teachers who had been trained in special education, while only five teachers out of 143 indicated having experience in teaching learners with dyslexia. knight (2018:4) observed that ‘teachers had basic awareness on dyslexia yet lacked the awareness on specific symptoms of dyslexia which are crucial in early identification of learners with dyslexia’. moreover, the teachers were found lacking the ability to make adaptation in teaching materials and assessment to suit the needs of learners with dyslexia. furnham (2013) conducted a study in the united kingdom and the findings revealed that although the participants provided a relevant definition of dyslexia, they were not sure about the neurobiological aspects of dyslexia. also commenting on the importance of teachers’ awareness and knowledge of dyslexia, tailor and coyne (2014:2) are of the view that ‘the awareness and knowledge held by teachers about dyslexia does affect their ability to help a learner in the classroom’. another study was conducted by elias (2014) in new zealand that sought to examine the nature of teacher knowledge about dyslexic learners. the results further revealed the teachers’ lack of knowledge on what modality of teaching should be employed and resources that should be used. as already indicated above, few studies have been conducted in the developing countries on the learning challenges faced by learners with dyslexia. one of the prominent studies is a study conducted by shetty and sanjeev rai (2014) in india. the results of their study concluded that only 1 in 3 teachers had adequate knowledge of dyslexia. alawadh (2016) conducted a similar study on teachers’ perceptions of the challenges related to provision of services for learners with specific learning difficulty (dyslexia) in kuwait. the results of this study revealed that dyslexia was conceptualised differently by teachers in kuwait as compared to their counterparts in the developed countries. the overall conclusion was that teachers were disempowered, lacked training and did not have sufficient knowledge of dyslexia or how to provide suitable early interventions. a number of studies conducted in the developing countries reveal that teachers have minimal readiness to identify learners with dyslexia (abraham 2014: peires et al. 2021). in the south african context, the department of basic education (2011:2) states that teachers must have a clear understanding of the needs of all learners, including those with special educational needs and be able to use and evaluate distinctive teaching approaches to engage and support them. however, as mentioned earlier, inadequate teacher training may leave teachers ill-equipped to meet this requirement. literature identifies early interventions to strengthen the language foundations for reading as important. the key aspects related to early interventions are that they require trained practitioners (hulme & snowling 2016), that interventions should occur in the early years of primary schooling (khaliq et al. 2017; sako 2016; torgesen, foorman & wagner 2007) and that interventions should include issues related to learning styles (mortimore 2008). based on the literature cited above, the authors of this article are of the view that the developed countries seem to have made progress as far as addressing the learning challenges faced by learners with dyslexia. the development of policies and frameworks for understanding dyslexia bears testimony to this claim. however, in the developing countries, the literature reviewed does not demonstrate such efforts by governments. method research design this research employed both the quantitative and qualitative research methods, which is also known as mixed methods research. creswell (2014:40) states that ‘mixed methods employ strategies of inquiry that involve gathering data either simultaneously or sequentially to best understand research problems’. the mixed methods approach was deemed relevant for this study because it allowed the researchers to understand contradictions between quantitative and qualitative findings. one method complements the other. the qualitative method allowed the data to be collected deeply as it allows clarity seeking to be asked at the place with the participants. quantitative data brings in a more balanced view to the study by present quantitative data. the primary reason for combining quantitative and qualitative approaches is that it allows for more comprehensive and synergistic use of data in offering a better understanding of research problems and complex phenomena than either approach could provide on its own (fetters & freshwater 2015:44). because the study relied on the teachers’ awareness and knowledge of dyslexia, the phenomenological design was deemed relevant. according to cohen, manion and morrison (2007), phenomenology is a: [t]heoretical point of view that advocates the study of direct experience taken at face value and one, which sees behaviour as, determined by the phenomena of experience, rather than by an external, objective and physically described reality. (p. 22) therefore, phenomenology allowed the participants to present their voices about their awareness and knowledge of dyslexia. participants the sample consisted of 30 government school primary teachers from two schools in gauteng province, south africa. these teachers were purposively selected, as language teaching was one of their subjects. in addition, these teachers were selected on the basis that they had learners who experienced reading difficulties in their classrooms, not necessarily in the year in which the study was conducted but even in the previous years. the teachers were teaching grade 1 to grade 5. the sample of teachers consisted of 25 woman and 5 men with their ages ranging from 23 to 63 years. the mother tongues of the respondents were afrikaans, setswana, isizulu and sepedi. these teachers were teaching their mother tongues as well as english first additional language (efal) and their qualifications ranged from a diploma to an honours degree. instrumentation a questionnaire was used to collect data in this study. nduku (2020:295) defines a questionnaire as ‘a research device or instrument that is made up of a series of questions which are closed-ended or open-ended’. the questionnaire for this study consisted of 20 true or false statements, 10 closed-ended questions and 12 open-ended questions that were used to gather data from the respondents. with regard to closed-ended questions, a 5-point likert-type scale was used in which respondents specified their level of agreement to a statement typically in the following five points: (1) strongly disagree or sd, (2) disagree or d, (3) not sure or ns, (4) agree or a, and (5) strongly agree or sa. this was adopted to suit the purpose of this study, which addresses a sensitive topic, whereby cohen, marion and morrison (2011) assert that a questionnaire has the ability to preserve anonymity and deal with sensitive areas of study. as already mentioned, the open-ended aspect of the questionnaire consisted of 10 open-ended questions. in this study, the researchers collected quantitative data by asking closed-ended questions and qualitative data by asking open-ended questions. the reason for combining open-ended questions with closed-ended questions is that the closed-ended questions have a limited set of possible answers like true or false. the open-ended questions allowed the participants to answer in any manner they chose. moreover, the open-ended questions afforded respondents the ability to give longer answers and yielded more insights because respondents were able to elaborate their responses. data analysis after the quantitative data were collected from the sample participants, the researchers employed descriptive statistics to analyse, interpret the data, and give meaningful analysis and discussions. descriptive statistical tools such as percentages, tables, graphs and figures were employed to strengthen the findings of the study through spss version 22 and excel data analyser 4. according to maree (2007), qualitative data analysis involves working with data, organising them, categorising them into manageable units, synthesising them, searching for patterns, and discovering what is important and coming up to reliable conclusions. in this study, the researchers used content analysis to analyse the qualitative data solicited by open-ended questions. columbia university (2019) defines content analysis as a research tool that is used to determine the presence of certain words, themes, or concepts within some given qualitative data. they further point out that sources of data for content analysis could be from interviews, open-ended questions, field notes, and so on. the researchers sifted through the open-ended responses one by one and decided what codes were the best fit. this was followed by coding the data into manageable code categories for analysis. in the context of this study, coding is the process of assigning codes to the open-ended answers. individual responses were assigned a numerical code. each code represented a segment consisting of similar responses. ethical considerations ethical clearance to conduct this study was obtained from the research ethics committee of the tswane university of technology, reference number: 2013.09/008. results quantitative data question one enquired about the teachers’ general level of awareness and understanding of the concept ‘dyslexia’. below are the quantitative findings that seek to provide answers to this question. items in table 1: (items 1, 3, 13 and 19) show broad definitions of the concept ‘dyslexia’ and these responses answer question 1. this is depicted by the word ‘is’ which acts to define a concept in response to the question: what is dyslexia or what causes dyslexia? table 1: teachers’ broad understanding of the concept ‘dyslexia’. this question sought to gauge how much the participants knew about dyslexia on a general level. their responses were anticipated to form a build-up to questions 2, 3 and 4. the assumption was that if the participants had some basic knowledge about dyslexia, they would be able to apply such knowledge when dealing with learners with dyslexia. this question was also anticipated to check how much misinformation or myths the participants had about dyslexia as this would inform their prejudice against learners with dyslexia. table 1 shows these responses. for example, table 1 shows that 77% of the participants knew that dyslexia was a neurological disorder. eighty-seven per cent of the participants dismissed the myth that dyslexia was limited to the english-speaking population. however, the researchers were concerned about 13% of the participants who accepted this myth as reality. table 1 further reveals that 70% of the participants were aware that dyslexia was hereditary. this information is important for the participants because it might facilitate collaboration between the school and the learner’s home to collectively find a strategy that might assist the learners with dyslexia. table 1 also revealed that 87% of the participants knew that dyslexia was a lifelong condition that made it difficult for people to read. this awareness was important so that the participants did not give up hope on the learners with dyslexia when they did not master reading as other learners did. this was also likely to assist participants so as to not set unobtainable goals for themselves. for ease of reading table 1, items 2, 5–12, 16–18, and 20 show the participants’ understanding of how dyslexia affects teaching and learning. the researchers observed that 30% of the participants were not aware that dyslexic readers demonstrated weak phonological processing skills. table 1, items 4, 14 and 15 further shows the participants’ understanding of solutions that could be undertaken to support learners with dyslexia. in summary, the findings showed that most participants were clear about the reading difficulties that learners with dyslexia had, in terms of language learning. the responses were as follows: readers with dyslexia demonstrated weak phonological processing skills (70%), struggled to read (90%); had problems in learning letters of alphabet (97%); experience repeated erratic spelling errors (97%); had trouble recognising letters and matching letters to sounds (97%); avoided reading, both aloud and to themselves (90%) and that they did not read at the expected level (97%). to show the participants’ understanding of dyslexia 90% of them disagreed with the false statements that ‘giving learners enough time would allow them to outgrow dyslexia’. ninety-three per cent of the teachers also did not agree ‘medication can help learners with dyslexia’. ninety per cent agreed that multi-sensory instruction could assist learners with dyslexia during the process of learning. all these statements prove that most participants had a clear awareness and understanding of dyslexia. question two of the study focused on the participants’ understanding of limitations brought about by dyslexia in teaching and learning and the possible solutions thereof. figure 1 reveals that the majority of participants demonstrated an understanding of solutions on how to support learners with dyslexia in the classroom. moreover, the participants’ responses depicted their understanding of reading difficulties that learners with dyslexia had and perhaps their own limited skills as teachers, in teaching such learners. this, in turn, showed how the participants were able or unable to cope with teaching learners with such reading difficulties and available solutions. in addition, responses to this question show teachers’ understanding of how difficult or easy it is to resolve reading difficulties brought about by dyslexia. figure 2 shows the participants’ responses regarding such solutions. figure 1: teachers’ understanding of the limitations caused by dyslexia to learners. the way teachers navigate teaching and learning within reading difficulties brought about by dyslexia question three of the study focused on the way teachers navigated teaching and learning within reading difficulties brought by dyslexia. this question sought to understand the participants’ daily practices and support when dealing with dyslexia in their classrooms. this was depicted by the letter ‘i’ and ‘my’. the analysis is shown in table 2. table 2: interest in further training on dyslexia. the findings showed that only 17% of the participants had learners with dyslexia in their classes, 50% currently did not have such learners in their classes while 10% did not respond to the question. this, however, refers to the year of the research but does not mean that these participants had never had or never would have learners with dyslexia in their classrooms. the findings further show that 7% of the participants were aware about the symptoms of dyslexia, while 93% said that they were not aware and/or not sure. the majority of participants (57%) indicated that they had received training on the topic of dyslexia; 40% could manage learners with dyslexia in their classes; 47% understood the possible teaching strategies to accommodate learners with dyslexia (47%); 47% said that teachers in their schools came together and shared ideas, strategies, and materials to support learners with dyslexia. for further support, a low 33% said they consulted resources regarding readers with dyslexia while the majority (40%) were neutral. only 23% said they knew whom to consult when they had questions about dyslexia and learners with dyslexia; 33% responded that they did not know whom to consult while 43% were neutral. figure 2 shows that the majority of participants were aware of the symptoms of dyslexia and had received training on dyslexia. figure 2: the way teachers navigate teaching and learning within reading difficulties brought about by dyslexia. the teachers’ interest in being skilled to cope with dyslexia in their classrooms this fourth question sought to gauge the level of interest that participants had in acquiring further skills in dealing with dyslexia in their classes. table 2 reveals that all the participants indicated that they were willing to have additional dyslexic training. the responses to this question showed how the participants were proactive in addressing their shortfalls in a class with learners with dyslexia. this question may even point towards a vital gap that the department of basic education needs to address in alternative education. qualitative data the first question focused on the level of teachers’ general awareness of the concept ‘dyslexia’. as already mentioned above, 30 participants responded to the closed-ended questions as well as the open-ended questions. generally, the participants showed that they were aware and had some knowledge about dyslexia. some participants mentioned that although they did not have such learners in their classrooms at the time the study was conducted, in the previous years they used to have learners with dyslexia and therefore had experience about them. to substantiate this, teacher 4 said the following: ‘a learner with dyslexia is a learner who struggles with reading. they cannot remember the words; they will spell it every time. this is a learning disfunction. there is no medicine for this. they cannot spell, they struggle with spaces between words. everything is in one sentence from the top of the page till the last word on the page.’ (grade 1 teacher, female, 42 years) responding to the same question, teacher 1 said: ‘for learners with dyslexia, letters and words look like they are moving/jumping/turning. the learner struggles to make sense of it. it takes a lot of effort and concentration to make sense of the word. because of the letters moving, in their brain, it gives a lot more possibilities of what the word can look like. then the learner has to find/identify the correct word. after this process, the learner can only then read/pronounce it or write it.’ (grade 3 teacher, female, 38 years) on the same question, teacher 3 responded this way: ‘it is a disorder that affects a person’s ability to write and read. this is because of constant letter movement. for example, the reader finds that words “flow”; “move” or blur on the paper. sometimes when writing they will experience letter confusion (n/u; b/d). they often feel shy about their situation although there is nothing wrong with their abilities.’ (grade 2 teacher, female, 44 years) the second question focused on the teachers’ understanding of reading difficulties brought about by dyslexia in teaching and learning. in this regard, the participants showed some experience in teaching learners with dyslexia in the classrooms. some participants emphasised that as far as intelligence is concerned, these learners are not different from other learners but struggle to read and write. responding to this question, teacher 1 mentioned: ‘their work speed is very slow. they can come across as disorganised. sometimes are quiet learners. they do not want to read aloud or give answers in front of other learners. some of these learners can have behavioural problems due to frustration or feeling “dumb/stupid”. they are also not able to follow the instructions.’ (grade 3 teacher, female, 38 years) teacher 6 mentioned the following: ‘the learners with dyslexia have a challenge with the writing of letters or numbers e.g. d instead of b. they can have below average to above average intelligence. they do not look different from other learners.’ (grade 5 teacher, male, 32 years) responding to the same question, teacher 5 said: ‘these learners feel frustrated and unsure of themselves. they view themselves as people who fail to perform to expectations especially on written platform but could excel on verbal platform. these children miss out on things that their peers enjoy in life.’ (grade 4 teacher, female, 54 years) the third question focused on how the participants navigate teaching and learning within the reading difficulties brought about by dyslexia. some participants’ responses indicated that they were doing something to assist the learners with dyslexia. some respondents indicated that they used visual materials while others pointed out that they used clay to develop the letters of the alphabet together with the learners with dyslexia. these participants believed that learners with dyslexia performed better in hands-on activities. they believed that learners with dyslexia were kinaesthetic and therefore, using a teaching style that matches their learning style would facilitate their learning potential. responding to this question, teacher 4 said: ‘i do my best to be as concrete and visual as possible. i use verbal cues or pictures that can help the learner with dyslexia understand. sometimes, i build words with clay and also write in the sand. what i have observed through experience is that these learners learn better when they are doing something with their own hands. educators and parents need to educate themselves about how to provide support to dyslexic learners as some form of intervention.’ (grade 1 teacher, female, 42 years) teacher 2 provided a similar response when she mentioned that: ‘we have to help the learners with dyslexia by giving them the necessary support. all learning material on cds and reader and scribe for all formal assessments. these learners should be allowed to take reading material home so that their parents can also play a role in teaching them reading.’ (grade 4 teacher, male, 31 years) the final research question sought to know if the participants were interested in dyslexia training. all participants indicated their willingness to receive training to support learners with dyslexia. many of them indicated that they never had pre-service training on dyslexia but had some in-service training. therefore, they concluded that their training on dyslexia was limited. one of their reasons to need more training on dyslexia was that they wanted to be able to distinguish a learner with dyslexia from other learners who have normal reading challenges. the participants also indicated that it was difficult for them to identify the learners with dyslexia and they would appreciate any support in this regard. to this end, teacher 2 said: ‘i am willing to receive training on learners with dyslexia to broaden my knowledge and be able to assist the learners with dyslexia. i want to help them to reach their optimal potential.’ (grade 4 teacher, male, 31 years) responding to the same question, teacher 7 said the following: ‘i would like to learn how to identify these learners. maybe alternative test methods can assist us because when they write tests, they do not finish within the duration of the test given to all the learners. they always need more time. in our school, we have many learners who are dyslexic. therefore, any opportunity, such as training would assist us.’ (grade 5 teacher, male, 47 years) also responding to the same question, teacher 3 pointed out: ‘yes, i need training to be able to distinguish between whether the reading challenge is dyslexia or another reading challenge. secondly, i want to be better equipped to help the learner achieve his/her potential.’ (grade 2 teacher, female, 44 years) findings and discussion the study sought to evaluate the awareness and knowledge of dyslexia among public primary school teachers in gauteng. the study was triggered by the government’s adoption of the inclusive education policy in order to address the barriers to learning in the education system. this move has been viewed as not practical in the south african classrooms because some scholars, such as prinsloo (2008) and peters (2007) argue that learners with disability such as learners with dyslexia remain vulnerable. as indicated earlier, this study is linked to the implementation of the inclusive education policy. we highlighted the importance of the role of teachers’ empowerment or development in order to realise the dream of inclusive education as well as effective management of learners with disability. specifically, the first question focused on the level of teachers’ general awareness of the concept ‘dyslexia’. generally, the teachers showed that they were aware and had some knowledge about dyslexia. some teachers mentioned that although they had not received any pre-service training, they managed to teach learners with special education needs. although it was highlighted in the literature review section that teachers’ awareness and knowledge of dyslexia is significant for teachers, several studies have examined teacher awareness and knowledge of dyslexia and generally found weaknesses in some areas of awareness and knowledge and strengths in others (joshi, washburn & kahn-horwitz 2016; elias 2014; furnham 2013; knight 2018). another study that contradicted the findings of the current study about teachers’ awareness and knowledge of dyslexia is the one conducted by khaliq et al. (2017) in pakistan. their findings revealed that teachers of the elementary schools from lahore were not aware of the term dyslexia and only few of them were able to identify and manage it in their classrooms. these studies contradict the findings of the current study. this can be attributed, perhaps, to the different contexts and methodologies implemented. the second research question focused on the participants’ understanding of reading difficulties brought about by dyslexia in teaching and learning. in this regard, the participants showed some experience in teaching learners with dyslexia in the classrooms. some participants emphasised the fact that as far as intelligence is concerned, the learners with dyslexia were not different from other learners but struggled to read and write. the majority of participants demonstrated an understanding of solutions on how to teach learners with dyslexia in the classroom. moreover, the participants’ responses depicted their understanding of reading difficulties that learners with dyslexia had and perhaps their own limited skills as teachers, in teaching such learners. the fact that teachers had limited skills to cope with learners with disabilities in an inclusive classroom has been observed by various authors. for example, dalton, mackenzie and kahonde (2012) discovered that in south africa, the implementation of inclusive education is limited by a lack of teachers’ skills and experience in customising the curriculum to suit a wide range of learning needs. this could be one of the reasons why all teachers in the current study yearned for training on how to cope with learners with special education needs. the third question focused on how the participants navigated teaching and learning within reading difficulties brought about by dyslexia. some participants’ responses indicated that they were doing something to assist the learners with dyslexia. some participants indicated that they used visual materials while others mentioned that they used clay to develop the letters of alphabet together with the learners with dyslexia. these participants observed that learners with dyslexia performed better in hands-on activities. they believed that learners with dyslexia were kinaesthetic and therefore, using a teaching style that matches their learning style would facilitate their learning potential. this finding supports adewumi et al. (2019) who concluded that teachers claimed to assist the learners with special education needs despite the fact that they did not receive any pre-service training. in this situation, it could be that the in-service workshops conducted yielded positive results. chiappetta-swanson and watt (2011:4) also mentioned instances in which teachers manage the situation without any proper training when they refer to supervisors who are not trained as ‘muddling through’. similarly, in this case teachers manage to cope more or less satisfactorily despite the lack of expertise and/or equipment. the final research question sought to know if participants were interested in dyslexia training. all the participants indicated their willingness to receive training in dyslexia. many of them indicated that they never had pre-service training on dyslexia but had some in-service training. therefore, they concluded that their training on dyslexia was limited. this finding is in line with knight’s (2018) finding that declared that evidence-based teacher training, which informs teachers of the up-to-date research on the biological, cognitive, and behavioural aspects of dyslexia, is essential to combat misconceptions and ensure that teachers have more nuanced and informed understandings of dyslexia. abd rauf et al. (2018) have also highlighted the importance of teacher training on dyslexia. they alluded to the fact that learners with dyslexia needed trained teachers as well as a supportive school community teacher training is important for the early diagnosis of learners with dyslexia. also, while highlighting the importance of teacher training to understand dyslexia, hulme and snowling (2016) argued that educational interventions for reading and related learning disorders are effective when delivered by trained practitioners. conclusion this article has raised several matters related to evaluating the awareness and knowledge of dyslexia among public primary school teachers. to this end, it was mentioned in the introduction that learners with dyslexia needed trained teachers as well as a supportive school community. regarding the teachers’ awareness and knowledge of dyslexia, it is evident that the teachers participated in this study were aware and had some knowledge about dyslexia although they did not receive any information about dyslexia in their pre-service training. however, this finding did not imply that the teachers were totally oblivious to the classroom practice that may be helpful to dyslexic learners. as such, we concluded that there is room for improvement as far as learning how to teach learners with dyslexia in the classroom is concerned. the findings of the study further revealed that most teachers demonstrated some understanding of the solutions on how to deal with learners with dyslexia in the classroom although their coping strategies with these learners were, in many instances, limited. the findings also revealed that the teachers navigated teaching and learning within reading difficulties brought about by dyslexia. to this end, some teachers indicated that, informed by their experience, the learners with dyslexia found learning, especially, reading better, when they used clay to develop the letters of alphabet together with the dyslexic learners. thus, some teachers observed that the learners with dyslexia preferred a kinaesthetic learning style. it means that they learn by doing something with their hands. finally, the study revealed that all the teachers were interested in dyslexia training. the willingness of the teachers to receive training could be motivated by their passion to assist the leaners with dyslexia and their understanding that they need more specialised training in order to be specialised teachers necessary for inclusive education. recommendations in the context of the data collected and the findings made, the researchers recommend that, in order to enhance teachers’ awareness and understanding of dyslexia in the public primary schools, teacher training institutions in south africa should provide adequate and relevant preand in-service training courses on the pedagogy of teaching learners with dyslexia. we felt that dyslexia should form part of the reading component of the teacher training tertiary institutions. no participants in the study mentioned the relationship between the teachers and the parents of learners with dyslexia. we felt that a strong bond between the two parties should exist so that teachers report the progress and challenges faced by learners with dyslexia to their parents. in return, the parents should play their role by assisting and motivating these learners to read at home. the literature review section pointed that early identification of dyslexia could improve the learning opportunities for the learners with dyslexia. once the teachers and the parents identify the challenge at an early stage, other stakeholders like speech therapists and psychologists should also be involved at an early stage. the participants in the study complained about their lack of skills on how to identify and assess the learners with dyslexia. this is a cause for concern because these learners do not take the time taken by the ‘normal learners’ when it comes to classroom activities and examinations. therefore, the teachers should be made aware that these learners need extra time in order to finish their tasks. we also recommend that teachers give the remedial support to assist learners according to their identified reading difficulties. this move is likely to allow the learners with dyslexia to catch up with their peers. finally, we recommend a collaborative effort among all stakeholders and adequate training of teachers to ensure effective support for learners with dyslexia. acknowledgements the authors would like to acknowledge the role played by the participants in agreeing to participate in the data collection process. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors contributed to the design and implementation of the research, analysis of the results and writing of the manuscript. funding information this research 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www.theconversation.co. article information authors: chrisma pretorius1 gretha cronje1 affiliation: 1department of psychology, stellenbosch university, south africa correspondence to: chrisma pretorius email: chrismapretorius@sun.ac.za postal address: private bag x1, matieland, stellenbosch, south africa 7602, south africa dates: received: 12 dec. 2014 accepted: 20 apr. 2015 published: 10 july 2015 how to cite this article: pretorius, c. & cronje, g., 2015, ‘people with psychogenic non-epileptic seizures: a south african perspective’, african journal of disability 4(1), art. #176, 7 pages. http://dx.doi.org/10.4102/ajod.v4i1.176 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. people with psychogenic non-epileptic seizures: a south african perspective in this original research... open access • abstract • introduction • research method and design    • participants, procedure, data analysis and ethical considerations • results • discussion    • limitations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: psychogenic non-epileptic seizures (pnes) is a disabling disorder which has a negative effect on the quality of life of individuals with pnes. a clear understanding of the disorder is necessary, however, to date, research about pnes in south africa is limited. objectives: the aims of this study were to explore the demographic variables of individuals with pnes in south africa, to review the available body of research on pnes, and to compare it with our results. method: twenty-two people with pnes, with confirmed video eeg, were recruited by means of convenience sampling from two hospitals. descriptive statistics were used to describe the demographic variables of the participants. results: internationally comparable results revealed misdiagnoses and low treatment delivery amongst a primarily female population. conclusion: this study provided greater insight into individuals with pnes in south africa, highlighting the need for more information, support, effective treatment and accurate diagnosis of pnes. introduction top ↑ psychogenic non-epileptic seizures (pnes) is described as paroxysmal behaviour patterns that mimic epileptic seizures (es) but are not associated with abnormal electrical discharges in the brain (bodde et al. 2009). these episodes are seen as ‘a response to psychological or social distress, which occurs when alternative coping mechanisms are inadequate or have been exhausted’ (plug, sharrack & reuber 2009:994). it is also believed that pnes arises from an unconscious process and that these individuals do not deliberately fake the seizures (goldstein & mellers 2006). for this reason, it cannot be regarded as malingering (gross 1983). pnes is more commonly (e.g., 80%) observed in women (bora et al. 2011; deveci et al. 2007; reuber et al. 2003; szaflarski et al. 2000; uliaszek, prensky & baslet 2012). the occurrence of pnes appears to peak during the second and third decade of life (deveci et al. 2007; strutt et al. 2011). studies focussing on children and adolescents with pnes indicated a mean age of 14 years (hempel, doss & adams 2010). rare incidences of pnes have been identified in individuals younger than 4 years (reuber 2008) and older than 65 years (szaflarski et al. 2000). people with pnes typically have an older age of onset than people with epilepsy (es) (cragar et al. 2005). the prevalence rate of pnes in the us and western europe is estimated to be between two to 33 per 100 000 (benbadis & hauser 2000). data from epilepsy centres report a much higher prevalence rate of pnes (woollacott et al. 2009), because of the general misdiagnosis of pnes as es and the resistance of people with pnes to anti-epileptic drugs (aeds) (bodde et al. 2009). research indicates that 20% to 30% of people referred to epilepsy centres for examination of seizure disorders have pnes (benbadis & hauser 2000; griffith & szaflarski 2010; martin et al. 1998). the incidence and prevalence rates of pnes in south africa are still unknown because no epidemiological studies on this condition have been conducted in south africa. however, according to a neurologist at the epilepsy unit of the constantiaberg medi-clinic in south africa, several individuals per month are diagnosed with pnes at their facilities (j. butler, pers. comm., 09 march 2011). despite the increase in published knowledge about pnes, the average period between the manifestation of the first seizure and a correct diagnosis remains unacceptably long at approximately seven years (cragar et al. 2002; jones et al. 2010; lafrance jr. 2008). diagnosing pnes is difficult (reuber & elger 2003). abnormal electroencephalogram (eeg) patterns during the inter-ictal phase of seizures have been reported to be unhelpful in distinguishing pnes from es (benbadis & lafrance jr. 2010). according to brown et al. (2011), the main reason for this is: over-interpretation of non-specific eeg changes (it is worth noting that this is specific to practice in the usa) the fact that a normal inter-ictal eeg does not exclude epilepsy, limiting the diagnostic usefulness of outpatient eeg. however, the introduction of new diagnostic techniques such as the simultaneous video eeg (veeg) in the late 20th century enabled physicians to rule out cardiac or neurological causes of seizure-like events (hamilton et al. 2010). therefore, proper knowledge of pnes symptomatology is important for early screening of these individuals for veeg recording and the correct interpretation following the examination (mostacci et al. 2011). although no single clinical feature or observation is pathogenic of pnes (hoerth et al. 2008; reuber & elge 2003) certain behaviours are associated strongly with pnes (benbadis & lafrance jr. 2010). the following features are clinically useful to raise the question of whether the nature of a seizure may not be epileptic, but rather psychogenic: longer seizure duration (cragar et al. 2002; reuber & elger 2003) resistance to aeds high frequency of seizures (e.g., daily) (benbadis & lafrance jr. 2010) ictal stuttering (benbadis & lafrance jr. 2010; hoerth et al. 2008) pelvic thrusting (benbadis & lafrance jr. 2010; cragar et al. 2002; hoerth et al. 2008; mostacci et al. 2011) preserved consciousness (benbadis & lafrance jr. 2010; mostacci et al. 2011). complicating the diagnosis is the fact that in 10% to 20% of people with pnes, es and pnes coexist (griffith & szaflarski 2010; lezak, howieson & loring 2004), and also the fact that veeg monitoring is expensive and not always available (hoerth et al. 2008; reuber & elger 2003). however, pnes, when misdiagnosed, is costly to people with pnes, the health care system and society. it may lead to: prolonged treatment with aeds for what is mistakenly thought to be epilepsy (jones et al. 2010; reuber et al. 2003) a delay of appropriate psychological treatment (bodde et al. 2009; hoerth et al. 2008) unnecessary hospitalisation frequent use of health care resources (asmussen et al. 2009) unemployment (hamilton et al. 2010) a negative effect on social development (bodde et al. 2007). people with pnes, as a group, are very heterogeneous and pnes does not have a single psychological aetiology (bodde et al. 2009; lezak et al. 2004; reuber et al. 2007). differences with regard to psychosocial, psychological, and organic factors have been identified (baslet, roiko & prensky 2010; lezak et al. 2004). the most common predisposing factors of pnes reported are: trauma family dysfunction psychiatric comorbidity coping mechanisms. traumatic events most commonly reported are: childhood sexual or physical abuse (bowman 2010) stressful life events severe physical illness (turner et al. 2011) bereavement (bora et al. 2011). people with pnes viewed their families as being more dysfunctional than did people with es, particularly with regard to communication, affective involvement, and conflict (bowman 2010; lafrance jr. 2008; reuber et al. 2007). most of the people with pnes have comorbid psychiatric disorders of which depression and anxiety are the most commonly reported (asmussen et al. 2009; goldstein & mellers 2006; mercer, martin & reuber 2010). people with pnes also generally make use of avoidance coping strategies to deal with everyday problems (cronje & pretorius 2013; reuber 2008). the literature suggests that sociocultural factors that are strongly associated with the development of pnes in western countries include sexual or physical abuse (bowman 2010), trauma (hingray et al. 2011), and conflict in the family (lafrance jr. 2008; reuber et al. 2007). in eastern countries, however, research reveals that gender-specific inequalities (bora et al. 2011; deveci et al. 2007), education (bora et al. 2011; hingray et al. 2011), socioeconomic status (deveci et al. 2007), and dysfunctional family structures (dhanaraj et al. 2005) are the sociocultural factors that play the greatest role in the development of pnes. however, research that focuses more specifically on these cultural differences is still needed. south africa is a multicultural country with numerous ethnic groups. several of the abovementioned sociocultural factors might, therefore, play a role in the development of pnes in south african individuals. although different predisposing factors for the development of pnes have been reported, researchers are in agreement that pnes does have a negative effect on the health-related quality of life (hrqol) of individuals (cronje & pretorius 2013; mercer et al. 2010). previous research indicates that hrqol is significantly lower in people with pnes than it is in people with es (al marzooqi et al. 2004; testa et al. 2007) and in the general population (cronje & pretorius 2013; mercer et al. 2010; uliaszek et al. 2012). strutt et al. (2011) reported that the individuals, with pnes, in their study believed that their low physical, emotional and social functioning was a direct result of their pnes condition. these findings highlight the psychological and physical problems (e.g., difficulties with daily activities or work) that people with pnes experience. according to brown et al. (2011), one of the benchmarks for epilepsy research of the national institute of neurological disorders and stroke (ninds) is to develop treatments for pnes, because of the incidence and prevalence of the disorder and the lack of treatment efficacy data. the most common treatment plans, based on the pnes aetiology, include: cognitive-behavioural therapy (cbt) psychodynamic orientated psychotherapy group psychotherapy family therapy a multidisciplinary approach (lafrance jr. & bjørnaes 2010; lafrance jr. et al. 2014). in the literature, no consensus exists about the types of treatment that may be most effective for treating pnes (zaroff et al. 2004). it also does not seem possible to develop a ‘one-size fits all’ treatment, because of the multifactorial aetiology of this group (reuber 2008). however, in a pilot randomised controlled trial study in the united kingdom, it has been found the frequency of seizures in people with pnes were reduced more effectively with treatment with cognitive-behavioural therapy than standard medical care on its own. (goldstein et al. 2010). these findings are forming the basis for a major multicentre trial now underway in the united kingdom. furthermore, a recent study of la france et al. (2014) indicated that pnes can be effectively treated with manualised cbt. although people with pnes are some of the most challenging to treat in medical practice (jones et al. 2010), research demonstrates that pnes is a treatable disorder (lafrance jr. & bjørnaes 2010; lafrance jr. et al. 2014). although limited research has been undertaken on long-term prognosis, studies consistently report that a third to a fourth of people with pnes become chronic pnes sufferers (bodde et al. 2009). possible reasons for this may be the differences in psychopathology; for some people with pnes intensive and prolonged therapy is necessary for a favourable prognosis (bodde et al. 2009; cragar et al. 2005). however, it should be noted that information about more global measures of outcomes in people with pnes is lacking (martin et al. 1998). pnes is as disabling as epilepsy (al marzooqi et al. 2004; lafrance jr. et al. 2014; testa et al. 2007) and has a negative effect on the hrqol of individuals in south africa (cronje & pretorius 2013). although the prevalence rate of pnes is unknown in south africa, pnes is commonly diagnosed at epilepsy-monitoring units, according to a neurologist at the epilepsy unit of the constantiaberg medi-clinic in south africa (j. butler, pers. comm., 09 march 2011). new investigatory techniques make it possible to distinguish between epileptic and non-epileptic seizures. however, access to appropriate diagnostic facilities and health care workers capable of making the diagnosis is limited, resulting in misdiagnosis that is costly to the patient and also to the health care system. from the literature reviewed, it is clear that an understanding of the disorder is necessary for people with pnes to accept the diagnosis and for health care workers to treat these patients successfully. however, to date research about pnes in south africa is limited. therefore, the primary aim of this study was to explore the demographic variables of people with pnes in order to gain a better understanding of people with pnes in the south african context. research method and design top ↑ participants, procedure, data analysis and ethical considerations by means of convenience sampling, 22 participants were recruited to participate in this study. the participants had to be south african citizens and 14 years of age or older. the eligibility criterion for each pnes participant was a confirmed diagnosis of pnes by an experienced neurologist, based on the results of veeg. people with pnes and comorbid epilepsy were excluded from the study. data collection took place over a period of nine months. people with pnes attending the epilepsy unit at the constantiaberg medi-clinic, or the department of neurology at the tygerberg hospital, for assessment or treatment were informed by the neurologist of the opportunity to participate in the study. these hospitals were selected because access to participants in both these regions is convenient, and both hospitals have specialised veeg equipment to diagnose people with pnes. a demographic questionnaire was used to obtain the information required for descriptive purposes and to determine demographical variables of the participants. the demographic questionnaire was developed by reviewing demographic information from previous studies and compiling a questionnaire with the typical questions. descriptive statistics were used to describe the basic features of the data in this study, and provide simple summaries about the sample and about the observations that have been made. participants had to give written informed consent to participate in this study. this research was explorative and formed part of a larger study. ethical approval for this study was obtained from the health research ethics committee at stellenbosch university (protocol number: n11/08/267). results top ↑ in total, 25 individuals with a confirmed veeg diagnosis of pnes were referred to the researcher during the data collection period. most of the people with pnes (n = 21) were referred by the neurologist at the epilepsy unit of the constantiaberg medi-clinic. of the 25 people with pnes that were referred to the researcher, only three people chose not to participate in the study, which means that the study had a participation rate of 88%. most of the pnes participants (77%) were female, whereas only 23% (5 of the 22) were male. the mean age of the pnes group was 32.77 years (with a sd of 14.40). the age distribution of this sample was bimodal, where 32% of the sample was between the ages of 10 and 20 years and 27% of the sample was between 40 and 50 years. one of the reasons for this distribution may be that the sample consisted of a combination of adolescents and adults (people of 14 years in age and older). half of the participants’ home language was afrikaans, and the remainder were english speaking. most of the people with pnes in this study (68%) were caucasian, and the remainder of the sample was mixed-race (32%). the ethnicity categories were included in this study only as a control measure to determine how closely the distribution of the participants reflects the diverse population of south africa in general. however, the sample size of this study is too small to draw any conclusion about the population distribution of people with pnes in south africa. it is important to note that the social and ethnic mix of the study sample is certainly not representative of the general south african population. a possible reason for this may be because the majority of the sample (84%) was recruited from private health care services. the rest of the demographic information of the pnes group is summarised in table 1. table 1: demographic information of people with psychogenic non-epileptic seizures (n = 22). table 1 reflects that the majority of the participants were married (50%). seven of the pnes participants were still at school. of the pnes participants that were not at school or studying, only 53% were employed full-time, whereas 40% were either unemployed or medically retired. most of the pnes participants viewed their household income to fall within the middle-income group. only 32% (7 of 22) of the participants had been diagnosed with epilepsy before. for half of the pnes participants, it took less than a year before they were diagnosed with pnes. for 32% of the pnes group, it took between one and four years. only 14% of the pnes participants indicated that it had taken more than seven years to be diagnosed with pnes. half of the pnes group had one or more than one seizure per day. most of the pnes participants indicated that they were not receiving any psychological treatment. those who were receiving treatment were mostly receiving psychodynamic therapy. more than half of the pnes participants indicated that they would like to be part of a support group and receive support from someone who has previously been diagnosed with pnes. discussion top ↑ the majority of the pnes sample of this study consisted of women. this tendency is in line with other studies that reported that pnes is gender related and more commonly observed in women (bora et al. 2011; deveci et al. 2007). the exact nature of the close relationship between females and pnes is not yet well understood (schmitz 2010). oto et al. (2005) found no significant gender differences between social and aetiological factors in their study of people with pnes. congruent with other reports in the literature, the pnes participants in our sample had low education levels. most of the pnes participants in our study (excluding the seven participants that were still at school) had an education level of grade 12 or lower. previous research indicates that sociocultural factors such as poor education (bora et al. 2011; deveci et al. 2007) may play a role in the development of pnes. in contrast to deveci et al. (2007), who indicate that low socioeconomic status may play a role in the development of pnes, most of the pnes participants in our study (82%) viewed themselves as being within the middle or high income bracket. one of the reasons for the relatively high socioeconomic status of our pnes group may be that most (84%) of the participants were recruited from a private hospital (the constantiaberg medi-clinic). therefore, these results should be interpreted with care and not be seen as an indication of the general pnes population in south africa. most of the south african population does not have access to private health care or medical aid funds and is, therefore, incapable of affording access to private hospitals with the necessary veeg equipment. at the time of the study the tygerberg hospital had only one veeg monitoring unit, whereas the epilepsy unit at the constantiaberg medi-clinic had several veeg monitoring units. studies indicate that the average period between seizure manifestation and correct diagnosis is about seven years (cragar et al. 2002; jones et al. 2010; lafrance jr. 2008). however, in this study, only 14% of the pnes participants indicated that it took seven years or more, after their first seizure manifestation, before they were diagnosed with pnes. most of the pnes participants (55%) received the correct diagnosis of pnes within one year of their first seizure. for the rest of the participants (31%), it took between one to four years before they received the correct diagnosis. a possible reason for the earlier diagnosis in our study may be that the hospital where most of the participants were recruited (the constantiaberg medi-clinic) has several veeg monitoring units with sufficient equipment to confirm a correct diagnosis of pnes. it may not be the case at other hospitals or epilepsy units in south africa as veeg monitoring is costly and not available countrywide (hoerth et al. 2008; reuber & elger 2003). it is also possible that there may be people with pnes in south africa for whom a longer period (more than seven years) has lapsed before a correct diagnosis was made, as our study made no provision for people with pnes who were not referred to epilepsy units (i.e., they only saw a general practitioner, because of travel difficulties or financial limitations). research found that, without a veeg, the possibility of a definite diagnosis of pnes is only 50%, because certain seizure types (e.g., frontal lobe seizures) may mimic pnes symptoms (lafrance jr. 2008). therefore, an epilepsy-monitoring unit is usually necessary to distinguish epilepsy from pnes (szaflarski et al. 2000). although our results indicate a shorter period between seizure manifestation and the diagnosis of pnes than previous studies, a third of the pnes participants were initially misdiagnosed with epilepsy. researchers indicate that the misdiagnosis of pnes (hamilton et al. 2010; martin et al. 1998) increases the medical burden of pnes on society. almost half of the pnes group (45%) only received the correct diagnosis more than one year after their first seizure. the early diagnosis of pnes is not only important to reduce unnecessary medication costs (such as aeds). it is also important because a proper diagnosis is the first step in pnes treatment and the outcome is better in people with a shorter history of pnes (cragar et al. 2002; jones et al. 2010). in line with previous research (jones et al. 2010), only a third of the pnes participants indicated that they were receiving psychological treatment at the time of completing the research survey. possible barriers to appropriate psychological treatment may result from the following factors: a patient's refusal to accept the diagnosis (bodde et al. 2007) poor understanding of pnes by health care workers over emphasis on the seizures limited recognition of the psychological aspects transportation limitations lack of resources in rural areas (jones et al. 2010; lafrance jr. 2008; lafrance et al. 2014). the pnes participants in our study showed a high frequency of events which are typical of pnes, as reported in previous literature (benbadis & lafrance jr. 2010). half of the participants had one or more than one seizure per day, whilst 36% had at least one seizure per week. high pnes frequency does have a negative influence on hrqol (lawton et al. 2008). people with pnes experience bodily pain, and difficulties with daily and work related activities because of the high frequency of seizures. in our study 40% of the people with pnes were unemployed or medically retired when they were diagnosed with pnes. research indicates that psycho-education and a clear understanding of the disorder is necessary for people with pnes to accept the diagnosis and to treat these people successfully (bodde et al. 2007; duncan, razvi & mulhern 2011; zaroff et al. 2004). a third of the pnes participants indicated that they would like more information about pnes. most of the pnes participants (68%) also indicated that they would like to be part of a support group. from these results, it seems that there is a need for people with pnes to feel part of a group. zaroff et al. (2004) reported that placing people with pnes in a group allowed them to feel that pnes is not as uncommon as they might think. to provide these people with appropriate support, it may be beneficial for the neurologist or psychiatrist to provide them with enough information and the contact details of a pnes support group (if available) when the diagnosis is communicated to the person. limitations although the sample size seems to correspond with the low prevalence rate of pnes, and sample sizes in previous pnes research that generally vary between 20 and 30 participants (bodde et al. 2009), the results of the study need to be interpreted with caution. the current sample consisted of a convenience sample of people with pnes. consequently, the findings of the study cannot be generalised validly beyond this particular population. the fact that the results represent the experience of people with pnes from only two epilepsy centres (both of which are in the western cape region of south africa) may reflect biases of the epilepsy practices involved at these centres, and can be seen as a limitation of the study. furthermore, it is important to note that the social and ethnic mix of the study sample is not representative of the general south african population. this may be because the majority of the sample was recruited from private health care services. thus, generalising the results of the current study to the general south african population of people with pnes would be inappropriate, because this study is more reflective of a particular niche within the south african health care system, than representative of the south african health care system in general. however, the researchers would like to note that the people with pnes recruited from the epilepsy unit of the constantiaberg medi-clinic were from across the country, as that unit is the best equipped in south africa to diagnose pnes. it should furthermore be noted that there are very few epilepsy centres available in south africa. conclusion top ↑ in general this study supports the demographic results of previous international studies. it is evident from this study that pnes has a severe, negative effect on all emotional, social and physical aspects of the individual. it also highlights that people with pnes represent a public health problem resulting from the diagnostic difficulty, the poor prognosis and their unemployment status. the average medical cost in the south african context is unknown, but given that these individuals represent a proportion of people seen for seizure disorders by general practitioners, psychiatrists, psychologists, and in particular neurologists, and taking into account the average length of time before a patient is diagnosed with pnes, the burden of pnes on these individuals, medical aids and, also, the health care system of the country, may be substantial and a research avenue worth investigating. few research funding initiatives have been directed towards understanding and treating pnes in south africa. it is expected that this study will contribute to raising more awareness amongst clinicians in south africa about considering pnes as a differential diagnosis when individuals are diagnosed with seizure disorders, in order to ensure that these individuals are diagnosed correctly at an earlier stage and start treatment as soon as possible. there is also a need for adequately designed controlled studies to evaluate the effectiveness of available methods of treatment of pnes in the south african context. acknowledgements top ↑ prof martin kidd, stellenbosch university, department of statistics and actuarial sciences, for assistance with the statistical analysis. dr james butler, neurologist at constantiaberg medi-clinic, for his referrals and assistance with the data collection process. prof jonathon carr and the staff at the division of neurology at tygerberg hospital for their referrals. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions both c.p. 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recommendations conclusion acknowledgements references about the author(s) ermien van pletzen academic development programme, centre for higher education development, university of cape town, cape town, south africa bryson kabaso division of disability studies, department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa department of prosthetics and orthotics, princess marina referral hospital, gaberone, botswana theresa lorenzo division of disability studies, department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation van pletzen, e., kabaso, b. & lorenzo, t., 2021, ‘community-based workers’ capacity to develop inclusive livelihoods for youth with disabilities in botswana’, african journal of disability 10(0), a851. https://doi.org/10.4102/ajod.v10i0.851 original research community-based workers’ capacity to develop inclusive livelihoods for youth with disabilities in botswana ermien van pletzen, bryson kabaso, theresa lorenzo received: 10 feb. 2021; accepted: 08 oct. 2021; published: 09 dec. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: youth with disabilities encounter multiple barriers to livelihood opportunities and socio-economic inclusion. research focusing on identifying and evaluating evidence-based strategies that may facilitate their transition into socio-economic participation is limited. objectives: the study undertook to contribute knowledge and evidence to inform inclusive socio-economic development of youth with disabilities and capacitation of community-based workers engaged in implementing the livelihood component of community-based rehabilitation programmes advocating for inclusive development. method: this qualitative exploratory case study used the international classification of functioning, disability and health: children & youth version to analyse community-based workers’ knowledge and experience of the rural and peri-urban communities in which they worked in botswana. it further analysed their activities, strategies and recommendations in response to environmental factors impacting the livelihood opportunities of youth with disabilities. data were generated through semi-structured interviews, following a life history and phenomenological approach. data were analysed inductively using thematic content analysis. results: community-based workers showed sufficient knowledge and experience of barriers and enablers in health, education and training, social development, employment and governance that facilitated or obstructed access to livelihood opportunities for youth with disability. identifying more barriers than enablers, community-based workers adopted innovative strategies to sustain and strengthen their practices and activities in the livelihoods domain. they contributed recommendations, mainly aimed at government. conclusion: community-based workers have the capacity to provide valuable evidence and design strategy to facilitate the socio-economic inclusion of youth with disabilities. they are particularly adept at intervening at local levels but do not have sufficient confidence or capacity to mobilise supportive community structures or to exert influence at the level of policy formulation, decision-making and implementation. keywords: disability; youth; livelihoods; sustainable development; community-based rehabilitation; community development workers; environmental factors; africa. introduction disability and poverty are intertwined in complex ways, flowing from and feeding into each other (braithwaite & mont 2009:230). facilitating access to inclusive livelihoods is a powerful strategy to disrupt this cycle, which is especially effective if it enables youth with disabilities to establish a degree of socio-economic security early on in life (chappell & lorenzo 2012:20). however, research conducted in south africa indicates that youth with disabilities are likely to experience multiple environmental barriers to accessing education and training, employment opportunities, support systems and leisure activities, all of which carry livelihood benefits (lorenzo & cramm 2012:581). this situation also exists in botswana despite its growing economy and relatively high per capita gross domestic product (eide & mattli 2016:16). poverty rates remain high, whilst general income inequality (african economic outlook 2012:181) and high youth unemployment (keetile 2014:340) persist. these conditions are far more severe for the 59 103 people with disabilities (2.9% of the overall population), particularly the 15 701 youth in the 15–34 year category (mmatli, kebotsamang & lesetedi 2014:204–208). researchers acknowledge the existence of policy and structures in botswana that recognise the rights of persons with disabilities, such as the 1996 national policy on care for people with disabilities and the coordinating office for people with disabilities established in 2010 in the office of the president (mukhopadhyay & moswela 2020:46–48; omotoye 2018:1–9). however, researchers also point out that the country does not have disability-specific legislation entrenching equal opportunities in policies across all sectors of government. this makes it difficult to enforce the implementation of policy. the government has also not signed or ratified the united nations convention on the rights of persons with disabilities (un-crpd 2006), which provides a framework for foregrounding the dignity and basic human rights of people with disabilities as equal members of society and for systematically mainstreaming disability issues as integral to strategies for sustainable development (mukhopadhyay & moswela 2020:46–47; omotoye 2018:7; un-crpd 2006). policy development has furthermore stalled in botswana – revised disability policy drafted in 2011 to remove structural limitations to the meaningful integration of people with disabilities into social, economic, political and cultural aspects of life (dinokopila & mmatli 2014:22) has still not been accepted (omotoye 2018:1). within this context, research indicates that youth with disabilities continue to encounter multiple barriers to social inclusion and livelihood opportunities in botswana, for instance, barriers to accessing education, vocational training and employment (mmatli et al. 2014:204–208), whilst in the workplace attitudes of employers, peers and even family members hamper socio-economic inclusion (mmatli 2007:283–284). it has been shown that the adverse effect of disability on the well-being of youth can be mediated by employment and social support (cramm, lorenzo & nieboer 2013:523). for this reason, providing evidence of methods and strategies including youth with disabilities in socio-economic development plans would be of significant social value. such research would also strengthen the implementation and impact of community-based rehabilitation (cbr), the broad inclusive developmental strategy espoused by the world health organization that aims at providing equal opportunities to people with disabilities to access health services, education, livelihoods and social inclusion (who 2010a:11). the central role played by community-based workers in the implementation of cbr has been widely acknowledged in research reporting on their practices, strategies and achievements. researchers have shown the impact that they have on the lives of people with disabilities by creating support networks for the empowerment of individuals and their families in their communities (chappell & johannsmeier 2009). the strong alignment between their activities in diverse sectors and the who’s cbr guidelines has been highlighted (deepak et al. 2011; jansen-van vuuren & aldersey 2018). their potential to alleviate poverty by increasing the levels of social, educational, economic and political inclusion of people with disabilities, their families and communities has been shown (van pletzen, booyens & lorenzo 2014), as well as their ability to harness their knowledge of complex rural contexts to improve the lives of people with disabilities (booyens, van pletzen & lorenzo 2015) and their competencies to make a contribution to social justice for persons with disabilities and their families by advocating on behalf of them (lorenzo, van pletzen & booyens 2015). however, there is limited research focusing specifically on identifying and evaluating evidence-based methods and pathways that may facilitate the transition of youth with disability into socio-economic participation, which has a negative impact on designing appropriate developmental measures and strategies (engelbrecht, shaw & van niekerk 2017:6). developing a clearer understanding of the conceptual complexity of disability and the diverse needs of youth with disabilities have been identified as a key requirement for improving public service providers’ capacity to design and implement targeted strategies that make inclusive development a reality, especially in resource-limited settings (ned & lorenzo 2016:6). our study undertakes to help fill these gaps. the who’s international classification of functioning, disability and health: children & youth version (icf-cy 2007) provides our study with a conceptual framework for interpreting community-based workers’ knowledge and experience, activities and practices, strategies and recommendations related to the socio-economic inclusion of youth with disabilities. the icf-cy reinforces the social model of disability, which underlies the shift in cbr programmes in the past 30 years. this involves a shift from primarily focusing on physical impairments and medical treatment to a focus on the social and environmental barriers that restrict a person’s functioning and the intersectoral strategies that could be adopted to equalise opportunities through rehabilitation, poverty reduction and social inclusion of people with disabilities (who & world bank 2011:13). further conceptual substance was provided by the five components of the who’s cbr guidelines (who 2010a:24–25), which detail the areas of inclusion for people with disabilities in health, education, livelihoods, social and empowerment domains. the livelihood component, the focus of this study, in turn comprises five elements: skills development, self-employment, wage-employment, financial services and social protection (who 2010b:7–8). with reference to the livelihoods component, lorenzo, motau and chappell (2012:46) refer to community-based workers as ‘critical catalysts’ facilitating access to mainstream livelihood opportunities for youth with disabilities. the community-based workers who participated in this study were mid-level workers based in botswana who have several years’ accredited training (jansen-van vuuren & aldersey 2018:7; kabaso 2015). the research question posed in this study is whether community-based workers have the capacity to provide evidence (to higher education institutions, government, researchers and service providers) that could contribute to improved measures and concrete strategies for facilitating inclusive livelihoods for youth with disabilities within mainstream sustainable development plans. such evidence could also be used to capacitate community-based workers engaged in the livelihood component of cbr. the objectives of the study were to capture, analyse, interpret and evaluate community-based workers’ knowledge and experience of the rural and peri-urban communities they worked in; their activities, practices and strategies in response to the barriers and enablers that impact on the socio-economic inclusion of youth with disabilities and their recommendations to improve the socio-economic inclusion of youth with disabilities. methodology the study was nested in a larger research project that collected data from community-based workers (2011–2013) in botswana, malawi and south africa (booyens et al. 2015; lorenzo et al. 2015; van pletzen et al. 2014). the nested study analysed data collected by a botswana-based postgraduate student for a project which formed part of his masters in philosophy in disability studies from which a description of this methodology was drawn (kabaso 2015). like the larger study, the nested study had an exploratory case study design and adopted a qualitative, interpretive approach informed by life history research and phenomenology (plummer 2001). data for the nested study were collected from three districts close to gaberone in botswana (kabaso 2015). districts were purposively selected for sharing characteristics of rural and peri-urban environments, also called ‘urban village’ environments by eide and mmatli (2016:8). purposive sampling was used to select community-based workers from these districts. initially, four participants were selected. selection criteria were that participants should be conversant in english and have at least 5 years of experience working for government or non-governmental organisations (ngos) addressing social and economic challenges facing people with disabilities in rural or ‘urban village’ environments. the same selection criteria were used at a later stage to select three further information-rich participants, with the added criterion that they should have specific experience addressing economic and livelihood challenges facing youth with disabilities in these environments. the overall sample of seven participants thus constituted two males and five females, one of whom had a disability. data were gathered through semi-structured individual interviews consisting of open-ended questions, with exploratory probes. the four participants selected initially were interviewed following a life-story approach focusing on participants’ experience of disability, career choice and key moments from their professional lives. interviews focusing specifically on participants’ experience of facilitating livelihoods for youth with disabilities were subsequently conducted with two of the participants selected initially and the three participants selected at a later stage. these five participants all had rich experience of facilitating livelihoods for youth with disabilities. all seven participants were informed of the purpose of the study, participation was voluntary, and they all gave informed consent. interviews were conducted in english, and permission was requested to digitally record interviews. all interviews were transcribed verbatim. confidentiality was protected by using pseudonyms to avoid revealing participants’ names or other identifiable aspects. interviews were analysed inductively using thematic content analysis. themes related to community-based workers’ understanding and facilitation of the socio-economic inclusion of youth with disabilities were observed as they emerged, and further themes were identified until data saturation was reached. the data and themes were further interpreted using the icf-cy (who 2007) and the five domains of the cbr livelihood component (who 2010b) as conceptual frameworks. to verify the data, member checks were performed, either face to face or via e-mail and phone. this process provided the opportunity to ask for additional information and to ensure the credibility of the data. the authors conducted a joint participant and stakeholder workshop after data analysis was completed, allowing for further verification. ethical considerations ethical approval was granted by the health research unit of the botswana ministry of health (ref. no. ppme-13/18/1 vol. viii, 215) and by the university of cape town’s faculty of health sciences human research ethics committee (ref. no. hrec ref: 301/2013). findings the findings are presented in four themes: community-based workers’ knowledge and experience of the rural and ‘urban village’ environments in which they worked, their activities and practices related to facilitating the socio-economic inclusion of youth with disabilities, their strategies and their recommendations. the key findings categorised under each of the four themes are presented in figure 1. figure 1: key findings categorised in themes. community-based workers’ knowledge and experience of rural and ‘urban village’ environments participants showed substantial knowledge and experience of the enablers and barriers impacting on the socio-economic inclusion of youth with disabilities in rural and ‘urban village’ communities. overcoming physical barriers through assistive devices and technology participants showed awareness of the physical barriers that inaccessible infrastructure posed to youth with disabilities. malebogo referred to a student who could not get to an upstairs venue and could therefore not ‘benefit like other students’ from the lecturer’s attention. several participants, for this reason, stressed the importance of access to assistive devices and technology as a first step in overcoming physical barriers and facilitating socio-economic inclusion. gil described a client who became a self-employed taxi driver after receiving a prosthesis, whilst naledi illustrated how using rudimentary sign language became a bridge between her and youth who were deaf: ‘i haven’t received any training in sign language, but the little that i know, when i am with them, conversing with them, it’s nice because they will even joke or try to mimic what you are doing!’ (naledi, female, 32 years old) they are ‘part of your life’: support and relationships participants displayed an understanding of traditions in rural and ‘urban village’ communities that could lead to supportive relationships and closeness – ‘if there is someone with a disability… he or she is part of your life’ (gil, male, 36 years old). traditions could however also become barriers to inclusivity: kgomotso (female, 45 years old) referred to stigmatising ‘beliefs that if you get in touch with them you will get children with disabilities’. lefika showed that excessively close family relationships could lead to over-protectiveness, which could become a barrier in itself: ‘you would find a disabled child is not involved in the household chores. even if they are able to they are not being sent. either it’s overprotection … but the basic thing is they become excluded from family activities.’ (lefika, male, 42 years old) naledi described the exclusion experienced by some of her deaf clients within their families: ‘there are also barriers with the parents, with the siblings….. they just want to be sitting there as a family chatting, not taking into consideration what this one is doing or thinking. they will not even do it in signs….’ (naledi, female, 32 years old) participants identified inadequate support for youth with disabilities also in the workplace. lefika stated that ‘we end up losing people because they have not been properly supported within the system’. he further observed that: ‘some of the companies also will definitely be underpaying, looking at the person and saying, “this is not going to be too much because i am doing this person a favour anyway,” and they pay little.’ (lefika, male, 42 years old) ‘you know the culture’: perceptions and attitudes participants illustrated how vague perceptions and blurred definitions of disability fed into negative attitudes, including stereotypes and stigma. lefika expressed frustration with a blanket misunderstanding of disability: ‘people with disabilities are treated as people with special educational needs, special learning needs. so no matter [if] you are just in a wheelchair, looking to do academic things, they will feel you are a burden. (lefika, male, 42 years old) he further pointed out stereotypes prevalent in the workplace: ‘sometimes the reception work can be performed by someone with disabilities but … you know the culture, they want to put a nice looking lady at the reception and … where would they put these ones who maybe are in a wheelchair with deformity? they say the image of the organisation will be like that one….’ (lefika, male, 42 years old) ‘most of them are on paper really’: inadequate services, systems and policies participants were particularly vocal in this category, mentioning enablers and barriers. on the positive side, they clearly recognised the potential of a well-functioning inclusive education system to facilitate socio-economic inclusion of youth with disabilities. gil told success stories of youth with disabilities who had attained high levels of education and found employment in social work and accountancy. malebogo remarked that several technical colleges and universities had started admitting youth with disabilities and that some institutions provided disability services. she described a government system that broadened young people’s access by reducing standard admissions points. on the whole, however, participants experienced many barriers to socio-economic inclusion in the public education and training system. at the broadest level, they found absence of information about disability a particularly pervasive problem: ‘people really … lack information, starting … from the councillors, schools … parents … they do lack information as far as disability ….is concerned’ (gil, male, 36 years old). they further highlighted the barrier posed by inaccessible and unavailable public transport services. lefika (male, 42 years old) found that successful placement of young people in educational institutions was undermined by the ‘problem of transport for people with disabilities. i have to struggle to take these people … to schools’. limited resources were frequently identified as a barrier. malebogo (female, 40 years old) observed that ‘even at primary level, most of these schools don’t have special education units’. kgomotso (female, 45 years old) explained that they had ‘only one unit’ for ‘over 80 children’ and no ‘qualified specialist teacher in this area’. the few post-primary institutions in existence were almost all run by ngos, which hampered country-wide regulation of education and skills development. centres were furthermore concentrated in urban districts. as a result, young people from rural areas were losing out on family contact (malebogo, female, 40 years old). referring to children as young as three, gil (male, 36 years old) commented: ‘we are sort of killing … the social growth of a child. a child is now growing in an institute [rather] than growing with the family’. the low levels and restrictive types of available education and training were mentioned. kgomotso (female, 45 years old) explained that youth with disabilities could often not ‘proceed to higher levels’ and experienced problems with ‘marketing themselves’. naledi (female, 32 years old) referred to the very limited skills development opportunities available at post-primary level to youth with intellectual disabilities: ‘they will just be sent to the community without anything’. available vocational training was found to be poorly aligned with the current socio-economic needs of the country: ‘the courses that they are offering are … almost the same for the whole country’ (malebogo, female, 40 years old). for this reason, participants struggled to find appropriate work placements for young people: ‘they have done textile in institutions … gardening, leather works. but now you see they are employed in a totally different area of operation’ (kgomotso, female, 45 years old). when commenting on disability structures in botswana, participants acknowledged some positives, but with many reservations. masego expressed cautious appreciation of the ‘office that is advocating for people with disabilities in the office of the president’. lefika (male, 42 years old) praised the government’s adoption of ‘[the] millennium development goals’ including ‘universal primary education’, but pointed out that ‘the majority of our ex-students here … are not part of the 100%’. he also referred to ‘a policy on inclusive education’, which was, however, still at ‘policy level, implementation has not started’. all participants were outspoken about the absence of clear policies and poor coordination of disability structures and services. malebogo pointed to a problem at the highest political level: ‘as a country we have not signed the un convention [on the rights of people with disabilities] …. i think … if the country can sign that, then a lot of things will be in place … but for now everything is offered from different corners.’ (malebogo, female, 40 years old) naledi blamed confused government structures for weaknesses in service delivery. she ascribed social workers’ reluctance to engage with disability issues to general structural confusion: ‘at our district, the programme was with dhmt first [the district health management team], then it was transferred, i think it’s 3 years back, to social and community development. so they still have that problem with assisting the youths with disabilities.’ (naledi, female, 32 years old) gil (male, 36 years old) referred to the government’s instruction to ‘all departments to have a disability committee’, adding: ‘the thing is the committees are not functional, they are not doing the work that they are supposed to do’. participants, for instance, kefilwe, were vocal about the failure of policies to translate into practice: ‘there are policies and there are structures, they are there, but it’s just written in black and white…. there isn’t any law enforcement…. you will have a policy saying that this ministry should do this or these particular people should do this, but even if they don’t do it there wouldn’t be any legal … actions taken against them.’ (kefilwe, female, 31 years old) even though participants critiqued the failure of policy, they were also prepared to admit that they did not have high levels of policy literacy and were often ignorant about current policy. kgomotso acknowledged community-based workers’ responsibility to translate policy into practice: ‘most of them are on paper really…. we still need to go out there in the kgotla [traditional community council] meetings and … talk to people about these policies because … people are not very much aware of or sensitised about the policies that we are talking about.’ (kgomotso, female, 45 years old) gil (male, 36 years old) confessed, ‘i have realised that policies are there but … [they] are in the shelves’. community-based workers’ extensive knowledge and experience of rural and ‘urban village’ communities informed and shaped their activities and practices, as will be shown in the second theme. activities and practices to facilitate the socio-economic inclusion of youth with disabilities enhancing mobility and facilitating physical access participants saw enhancing mobility and facilitating physical access to health and educational services as important pre-conditions for socio-economic inclusion. naledi advocated for ramps at government facilities to ensure access to general social and community development services. gil described collaborating with social workers, who provided lifts for children needing to undergo assessment for educational placement. facilitating access to education and training participants further described multiple activities and practices related to facilitating access to education and training. kgomotso outlined steps in multi-layered referral and placement processes: identifying youth with potential, assessing the nature and level of their disability and investigating appropriate educational opportunities. they would assist the few who qualified for tertiary education by helping prospective students with application and admission procedures. for those who had not ‘gone that far’, they would gather information and assist with placement procedures at appropriate brigades (colleges providing technical and in-service training) or rehabilitation centres offering basic training. for youth with more severe disabilities, usually involving intellectual disabilities, they would ‘liaise with our colleagues at social and community development’ for places on short courses in areas such as ‘textile, crocheting … bead making and so forth’. developing databases of youth with disabilities for placement purposes naledi mentioned a successful practice of matching a list of available opportunities with a database of people with disabilities for speeding up verification: ‘if … there is a disabled person maybe who is applying for an empowerment scheme or a project, maybe at the youth department, they will want clarification from my office that … in fact this is a person with disability.’ (naledi, female, 32 years old) collaborating with partners and stakeholders several participants described the collaboration with a government initiative encouraging the private sector to employ people with disabilities. malebogo (female, 40 years old) explained: ‘they will ask us, “who are the people with disabilities around … that we can employ?” then we send their cvs … and they screen them’. kgomotso described moving between government and prospective employers to secure wage employment for promising candidates: ‘so what we have done, we have applied with them [the youth], they have submitted their names to office of the president, and office of the president has a liaising officer or human resources officer at [name of supermarket] headquarters. so after submitting, what we do is we keep phoning them: “have you not secured a place somewhere where you can put our clients who have applied with your office?” so that’s the little that we have managed so far.’ (kgomotso, female, 45 years old) showcasing success participants realised that showcasing successful employees with disabilities could counteract stereotypes. lefika mentioned that some employers had ‘tested’ the potential of youth with disabilities and found that they were ‘more productive than the … able bodied ones’. he recalled placing some youth with disabilities at a local industry, where ‘despite … challenges’ they were found to be ‘more honest and it was better productivity than before’. one of them was even ‘chosen to be the workers’ steward … because … they saw the passion, they saw the interest’. lefika felt that ‘contrary to people’s beliefs, [this youth] proved them wrong’. after such experience, employers would ‘actually request: “we want people with disabilities to come and work in our establishment”’. counteracting stereotypes could open up new types of opportunities. lefika mentioned that ‘when these diamond polishing companies were being established, they would say “we want so many people with visual, with hearing impairment, to be part of our team”’. he recalled a young person missing upper limbs who was employed at a company as an administrator: he could ‘write faster than most of these able bodied’. when he moved to the united states of america to study for a degree, the company ‘insisted on looking for someone with disabilities’, saying ‘we have never seen productivitiy of this magnitude’. disseminating information about training and livelihood opportunities despite limited social protection measures in botswana, participants were active in disseminating information and connecting disabled youth with the few available opportunities. gil arranged for the national youth council to ‘educate the people with disabilities about the programmes that they give so that at least they could benefit from the government’. he further described using donor grants to finance the start-up of micro-businesses for five young people with visual impairment who had only primary level education. they were provided with chickens, basic equipment and feed. apart from gaining in ‘confidence’, ‘esteem’ and ‘morale’, ‘some are even saying they are willing to go back to school’. the practices and activities presented in this section are sustained by systemic strategies that community-based workers devised, as can be seen in the third theme. strategies to facilitate livelihood opportunities for youth with disabilities five systemic strategies were mentioned by participants to facilitate the socio-economic inclusion of youth with disabilities. finding ‘people that can help us’: networking and intersectoral approaches participants described intersectoral approaches as key strategies in facilitating livelihood opportunities for youth with disabilities. they described themselves engaging in internal and external networking, liaising across multiple sectors and levels of practice. gil described how an intersectoral approach routinely shapes his daily activities: working directly with disabled youth and their families, assessing their ‘economic potential’ and ‘situation’, educating them about available government programmes, helping them to ‘come up with income generation projects’, liaising with government departments to organise workshops, calling on the national youth council to provide education on available opportunities and at a more practical level, assisting young people ‘to write business proposals’ and then to e-mail proposals ‘to people that can help us’ (various stakeholders such as donors, employers, government institutions or ngos). ‘you should know which office or which door to knock [on]’: advocacy and communication participants’ accounts of their practice showed the importance of advocacy as a strategy, as for instance in gil’s case: ‘as a community-based worker, you should be able to advocate… you should know which office or which door to knock [on]…’. he further mentioned using inventive, multi-layered approaches to strengthen advocacy and disseminate information, for instance, by working through kgotlas (traditional councils) and community chiefs to present educational workshops and information sessions on disability issues. he harnessed the power of the media, appearing on botswana television, which ‘was really an eye opener’ for the public, resulting in a flood of phone calls and visits from people needing information about education and livelihood opportunities for disabled youth. he also successfully promoted education and training centres for disabled children by using radio botswana to cover a wide geographic area. this resulted in 75 children joining their rehabilitation centre. creating hope: using role models to empower youth and promote employability role modelling was highlighted as a strategy to empower youth with disabilities and to promote their employability. lefika explained how community-based workers used role modelling to ‘create hope’: when youth with disabilities see the success of peers, they start thinking: ‘well, we have something to look forward to’. successful peers were a source of inspiration: ‘to some extent it has created a platform for people to be brave, daring’. role models could also convince employers to give more youth with disabilities employment opportunities: ‘some have really opened their eyes to say, “well, this is the right thing to do”’. creating follow-up pathways malebogo described a careful process of integrating young employees with disabilities into the work environment by getting employers to agree to ‘try’ one or two candidates, who are then supported through follow-up visits: ‘then you coach those two time and again, and also visit them time and again, to see whether they are doing the right thing, and also try to talk to the manager time and again until they are stable at work.’ (malebogo, female, 40 years old) in this way, community-based workers kept in touch with former clients and projects whilst creating the opportunity of steering the development of youth with disabilities, as well as giving advice and support to them and their employers. the final theme draws together community-based workers’ expertise in a set of recommendations, which are based on the evidence presented by the previous themes. community-based workers’ recommendations for enhancing disability-inclusive livelihood opportunities participants made a number of recommendations that they felt would support the socio-economic participation of disabled youth. address the educational and skills development needs of youth with disabilities the scarcity of specialised government-run training institutions was seen as a major obstacle in securing livelihoods for disabled youth. one of the recommendations was for more government institutions. participants also recommended the development of a cohort of specialised, qualified teachers. malebogo stated: ‘we … need personnel, people who are trained to work with people with disabilities, and we need centres’. gil emphasised the importance of providing decentralised training. there was also a recommendation for the government to provide more relevant forms of vocational skills training for youth with disabilities, and malebogo recommended that young people should be consulted on their choice of training: ‘look at their interests … you just take them and say, “go and do leather work!” after that they are not interested in leather work!’ sensitise and mobilise communities the importance of sensitising communities as a way of empowering youth with disabilities was observed. malebogo spoke of the need to ‘build their self-esteem’ and showed how this required community awareness of environmental factors: ‘we … need the whole community, for everybody, to be aware of the problems that people with disabilities have, the barriers that make them not to achieve like other able-bodied person.’ (malebogo, female, 40 years old) participants recommended putting youth with disabilities and their communities at the centre of developmental planning. in the first place, ‘you will learn a lot when you go into the community’, for instance, that ‘people with disabilities can even teach you, they are [the] best teachers, they will tell you their experiences’. lefika argued that: ‘you need to find out what it is the community there really needs, and plan with the community…. that is very important. if you don’t plan with the community … and [merely] take yours [plans] there, it becomes your programme and they won’t support it much…. you need community involvement.’ (lefika, male, 42 years old) develop up-to-date disability-inclusive policy, appropriate definitions and coherent structures participants emphasised the need for up-to-date disability-inclusive policy. whilst malebogo appreciated that there was a new disability policy in draft form, she pointed out that the country’s 1996 disability policy was outdated. she further asked for clearer bench marking and definition: ‘we are registering people with disabilities and issuing them with a card, [but] there is no standard…. when we say a person is disabled, what is disability and what are the types, categories of disability?’ (malebogo, female, 40 years old) she mentioned that as community-based workers they had ‘advised on bench-marking’, but the process was allocated to sweden, instead of a country that more resembled conditions in botswana, like south africa. several participants highlighted the need for more coherent government structures. naledi expressed frustration with fragmentation: ‘at the health ministry there is something about disability, at local government ministry there is something about disability’. malebogo observed: ‘we need to be in one ministry and speak with one voice and know … the services that we are offering to people with disabilities’. make government accountable for developing livelihood opportunities for youth with disabilities several participants were in favour of government endorsing a quota system for employment of youth with disabilities. kgomotso proposed ‘a clause’ that would bind ‘both government and non-governmental organisations to … employ maybe 5% of people with disabilities’. naledi recommended ‘that affirmative action be fully utilised’, because ‘disability is hampering the livelihood’ of this group. for youth with severe disability, kgomotso recommended the introduction of sheltered employment. salaries would never be as high as in the open market, ‘but it’s still better, you know, they will still get something’. in summary, the findings present multifaceted evidence about community-based workers’ knowledge and experience, their activities and practices, as well as the strategies that they devised to remove environmental barriers and enhance environmental enablers. they further suggested useful recommendations to facilitate inclusive socio-economic development of youth with disabilities. discussion the data show that community-based workers in this study had sufficient knowledge and experience of the rural and ‘urban village’ communities that they worked in to be able to identify key environmental factors that enabled and obstructed disabled youth’s access to livelihood opportunities. identifying more barriers than enablers, community-based workers adopted innovative strategies to sustain and strengthen their work in the livelihoods domain. their recommendations were mainly aimed at government although they acknowledged that they themselves needed to acquaint themselves with relevant policy developments and challenges of implementation. the icf-cy’s five categories of environmental factors (who 2007:28) provide a framework for returning to the research question whether community-based workers have the capacity to provide evidence that could contribute to improved measures and concrete strategies for facilitating inclusive livelihoods for youth with disabilities within mainstream sustainable development plans. these factors include the ‘physical, social and attitudinal environment in which people live and conduct their lives’, which could either obstruct or facilitate individuals’ functioning (who 2007:xviii; 9). figure 2 provides a visual summary of measures and strategies linked to the icf-cy’s categories of environmental factors that emerged from the evidence. figure 2: measures and strategies linked to the international classification of functioning, disability and health: children & youth version categories of environmental factors. making assistive devices and technology available and accessible community-based workers realised the potential of assistive devices to improve the chances of youth with disabilities to become socio-economically active. community-based workers played an important role in identifying young people who would benefit from assistive devices, provided information and networked with donors and professionals to improve access. in this respect, they were aided by the botswana government’s relatively good performance in providing assistive devices mainly through the public health service and mostly free of charge (matter & eide 2018:3–4). however, research also shows that the need for assistive devices in botswana remains largely unmet (matter & eide 2018:7) and that, as in many lowto middle-income countries (lmics), the availability of mobility devices (such as wheelchairs, crutches and prostheses) predominates, with much less access for people with impairments in hearing, seeing, communication or cognition (eide & mmatli 2016; matter & eide 2018). the literature also points to the need for holistic national plans regulating equitable access to assistive devices and technology (borg, lindström & larsson 2011:26). the study data reflect this situation. only one community-based worker spoke of the inclusive value of sign language and regretted not having received any training in it. other participants focused exclusively on facilitating mobility. this finding indicates that community-based workers’ knowledge and practice relating to providing equitable access to a range of assistive devices and technology urgently need to be expanded and regulated. advocating for making the natural and human-made environment accessible community-based workers showed awareness of the roles played by the natural and human-made environment in either facilitating or obstructing inclusion in educational and employment opportunities for youth with disabilities. in botswana, as in many other resource-restricted countries, the design of educational buildings does not accommodate disability (mukhopadhyay et al. 2012:6), whilst the built environment also becomes a major obstacle to inclusion in the workplace (mmatli 2007:280). there was evidence in the study of participants advocating for more accessible environments on the ground. however, community-based workers in the study did not seem to have the confidence or competency to interact with planners or political decision-makers at higher levels. this barrier echoes a finding by chappell and johannsmeier (2009:9–10; 12) that community-based workers’ impact was mainly at the private, individual level. in this respect, it becomes evident that community-based workers’ low levels of policy literacy and ignorance about current policy have the effect of hampering their ability and confidence to enforce inclusive policy in the public and political spheres. building support and relationships community-based workers were able to broker supportive relationships in families, communities and the workplace by offering assistance, information and counselling and by advocating for youth with disabilities. their first-hand knowledge and experience of rural and ‘urban village’ communities equipped them well for this task. they focused not only on creating multilayered support networks but also on counteracting stigmatising or other obstructive attitudes. their experiences and practices are in line with research, which indicates that whilst families are a fundamental source of strength and support, they can also be limiting and obstructive when family members undermine the confidence of youth with disabilities or doubt their effectiveness in the workplace (singal & jain 2012:171). employers’ attitudes could further be discouraging because they often expect and accept poor performance from employees with disabilities and do not support their progression (mmatli 2007:284). changing public attitudes to facilitate participation community-based workers in the study can be seen working across multiple sectors – health, education, transport, the private and public labour market – to counteract negative attitudes that create barriers to socio-economic inclusion. their strategy of show-casing the strengths and abilities (rather than the difficulties) of youth with disabilities was particularly successful in this respect, opening up new forms of employment and demand in the open labour market and contributing towards dismantling employment discrimination and negative attitudes from employers, supervisors and peers (stuart 2006). other studies likewise show the impact of beliefs about the causes of disability and how they could erect barriers to participation for people with disabilities (maart et al. 2007:366). studies also show how community-based workers could counteract such barriers, for instance, by recognising that taxi drivers’ stigmatising beliefs could be significant barriers to accessible public transport, which in turn could influence livelihood opportunities (lorenzo & cramm 2012:580). advocating for inclusive policies, services and systems community-based workers showed awareness of the challenges experienced by youth with disabilities across various sectors of service and government. they grappled with the limitations of policy, insufficient mainstreaming of disability issues and difficulties encountered in the coordination of disability services. participants acknowledged education, at all levels, as an important factor impacting the socio-economic participation of youth with disabilities. children and youth with disabilities have worse access to education and attain far lower levels of education than the non-disabled, whilst the quality of education that they receive is also almost always inferior (dinokopila & mmatli 2014:1). in combating these challenges, participants tended to advocate for more schools and training centres specifically targeting young people with disabilities, rather than for more widespread availability of inclusive education. research shows that inclusive education remains available to only small numbers of learners with disabilities, and that there are serious limitations to implementing inclusive models, especially in resource-restricted settings (mukhopadhyay, johnson nenty & okechukwu 2012:6–9; zwane & malale 2018:8–11). community-based workers could benefit from developing a better understanding of the potential gains of inclusive education (kuper, saran & white 2018:15–16). they could play a role in strengthening inclusive education by raising awareness of different educational options and assisting youth with disabilities to navigate between options (howgego, miles & myers 2014:12). responding to the challenge of under-employment or unemployment amongst youth with disabilities, community-based workers liaised with representatives from the private sector and the office for people with disabilities to open up new employment opportunities on the open job market. an area where community-based workers in the study seemed to have less capacity was in strengthening and collaborating with disabled people’s organisations (dpos) to empower youth with disabilities and strengthen their ability to advocate for themselves (mmatli 2007:288). whilst community-based workers were vocal in expressing their frustrations with policy and systemic weaknesses, their knowledge of policy issues and the importance of mainstreaming disability across multiple sectors tended to be vague and mainly theoretical, whilst their capacity for action at policy level was generally weak. one participant (naledi) expressed frustration with fragmentation of disability services across multiple ministries. however, another participant’s (malebogo’s) desire for locating all disability services in ‘one ministry’ would undermine integration and inclusion, which are key concepts in rights based and equal opportunities approaches to disability that emphasise the importance of mainstreaming disability issues as integral to strategies for sustainable development (un 2006). more consistent and legally enforced implementation of a human rights-based approach and stronger coordination of disability services across the sectors would better resolve the policy and structural difficulties experienced by community-based workers than the centralisation of specialised disability services. whilst botswana is not a signatory of the crpd (un 2006), the country’s disability policy recognises and protects the disability rights and dignity of individuals (mukhopadhyay & moswela 2020:47). however, few of the country’s policies make specific provision for disability or define disability clearly. there is also no specific legislation offering comprehensive legal protection for people with disabilities (dinokopila & mmatli 2014:33), a situation that puts people with disabilities at the mercy of service providers (mukhopadhyay & moswela 2020:46). translation of policy into practice has moreover been slow (omotoye 2018:10–11), suggesting that several of the factors characterising ‘policy evaporation’ (alfred & harrison 2006:6) could be at play in botswana: insufficient political commitment, complexities presented by mainstreaming, inadequate funding and insufficient guidance during implementation. an important step in implementation has been disability coordinating committees established at district level by the office for people with disabilities to improve intersectoral collaboration amongst stakeholders and develop partnerships with businesses to facilitate employment opportunities for people with disabilities (omotoye 2018:11). however, the coordinating office and district committees lack authority and capacity, again pointing to an urgent need for legislation that would empower the office to enforce its mandate of monitoring whether government departments and other stakeholders are playing their respective roles in ensuring the socio-economic inclusion of people with disabilities (omotoye 2018:50). whilst these represent challenges that community-based workers commented on, or even opportunities that they exploited, they seemed to lack confidence and skill to exert pressure on policymakers and implementers. research in neighbouring countries points to similar challenges experienced at the level of policy formation, implementation, enforcement and service coordination (chichaya, joubert & mccoll 2018; dziva, shoko & zvobgo 2018). equipping community-based workers with a more nuanced understanding of complex policy and systemic issues, as well as the skills necessary to engage in these environments, could strengthen their advocacy role in mainstreaming disability and their capacity to facilitate more systemic access to livelihood opportunities for youth with disabilities. recommendations our study prompts a number of recommendations. firstly, community-based workers’ knowledge of the range of assistive devices and technology available, their understanding of how these could facilitate the functioning of youth with disabilities and their ability to assess and refer children and youth to specialised services need to be expanded beyond the current focus on supporting mobility. training should be adjusted to include more information on assistive devices and technology supporting impairments in hearing, seeing, communication, self-care and cognition. community-based workers should also be trained to identify and respond to the large unmet need for assistive devices and technology across different types of impairments. secondly, community-based workers’ understanding of the barriers posed by the natural and human-made environment and possible interventions need to be expanded similarly to extend beyond a focus on mobility restriction. thirdly, community-based workers should receive more training in sensitising and mobilising the public and systematically expanding and collaborating with support and empowerment networks for youth with disabilities. such networks should include dpos and should make provision for special interest groups focusing particularly on the socio-economic participation of youth with disabilities. this empowerment would strengthen capacity to advocate for more disability-inclusive resources, policy, legislation and implementation, at both local and national levels. finally, community-based workers need to become more informed about existing policies, systems, services and regulatory mechanisms, which need to be disability inclusive, with the intention of assessing and identifying gaps and then prioritising responses. they should also be capacitated to develop an understanding of the governance structures related to disability services and support systems, particularly those related to the ability to grasp the types of governance structures and requirements for coordination that facilitates disability inclusion in national strategies and programmes. accessible disability-inclusive research and policy translation toolkits should be designed by teams of community-based workers, members of dpos and disability researchers, drawing on local and international research. these toolkits should be disseminated widely through print and digital means. conclusion our analysis of the viewpoints and experiences of a cadre of community-based workers active in rural and ‘urban village’ environments in botswana demonstrates their capacity to influence the socio-economic inclusion of youth with disabilities. the study reveals that through training and practice community-based workers in resource-constrained environments can develop the capacity to act as ‘catalysts’ (lorenzo et al. 2012) in facilitating the socioeconomic inclusion of disabled youth. the findings further suggest that community-based workers are particularly adept at intervening at local levels, which max-neef (1991) argues is where people-centred development will achieve poverty reduction and social inclusion. a number of challenges emerged from the study. whilst participants show that they have some knowledge of the policy environment and sufficient understanding of implementation challenges to make pertinent recommendations on how to improve livelihood opportunities for youth with disabilities, the study reveals that community-based workers themselves do not currently have confidence or capacity to mobilise supportive community structures (such as dpos or faith-based organisations) or to exert influence at the level of policy formulation, decision-making or implementation. this is an area that requires further investigation and needs to be addressed in the basic and further professional training of community-based workers. acknowledgements we wish to thank the multi-disciplinary collaborative team involved in the larger research project that this study was nested in, the community-based workers who were willing to be participants in the nested study and those who participated in the joint participant and stakeholder workshop. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.l. conceptualised and was the principal investigator of the overall multi-disciplinary research project in which this study was nested. all three authors were involved in the overall research project. t.l. further conceptualised and was the main supervisor of the nested study, which was conducted by b.k., who collected data and completed a thesis, which formed part of his masters in philosophy in disability studies at the university of cape town. the corresponding author, e.v.p., was a co-supervisor of the nested study and contributed to its conceptualisation and completion. she drafted the current article from the data collected and parts of the thesis produced by b.k. whilst drawing on some of the original material in the thesis, e.v.p. compiled a more comprehensive literature review, performed additional data analysis and reworked all sections of the article to accommodate the extra desk top research and data analysis. all three authors participated in commenting on and reformulating the article for publication. funding information funding and intellectual support were provided by the programme for enhancing research capacity (perc), research office, university of cape town and the national research foundation community engagement strategy. data availability the data that support the findings of this study are not publicly available because of their containing information that could compromise the privacy of research participants. data availability was not covered in the two ethics approval processes and documents and not negotiated with participants when they completed their informed consent forms. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references african economic outlook: promoting youth employment, 2012, african development bank, united nations development programme, united nations economic commission for africa, viewed 12 march 2017, from http://www.undp.org/content/dam/rba/docs/reports/african%20economic%20outlook%202012%20en.pdf. alfred, a. & harrison, m., 2006, ‘lessons from the disability knowledge and 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2019, from https://apps.who.int/iris/handle/10665/44575. zwane, s.l. & malale, m.m., 2018, ‘investigating barriers teachers face in the implementation of inclusive education in high schools in gege branch, swaziland’, african journal of disability 7(0), a391. https://doi.org/10.4102/ajod.v7i0.39 article information authors: rachel kachaje1 kudakwashe dube2 malcolm maclachlan3,4 gubela mji4 affiliations: 1southern africa federation of the disabled, bulawayo, zimbabwe2african decade for persons with disabilities, pretoria, south africa 3centre for global health and school of psychology, trinity college, university of dublin, ireland 4centre for rehabilitation studies, stellenbosch university, south africa correspondence to: rachel kachaje postal address: po box 2009, lilongwe, malawi dates: received: 27 aug. 2013 accepted: 19 nov. 2013 published: 04 june 2014 how to cite this article: kachaje, r., dube, k. & maclachlan, m. & mji, g., 2014, ‘the african network for evidence-to-action on disability: a role player in the realisation of the uncrpd in africa’, african journal of disability 3(2), art. #86, 5 pages. http://dx.doi.org/10.4102/ ajod.v3i2.86 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. the african network for evidence-to-action on disability: a role player in the realisation of the uncrpd in africa in this introduction... open access • abstract • introduction • specific afrinead objectives • develop a network to facilitate and coordinate research dialogue from evidence-to-action    • establish afrinead working groups to produce best evidence-to-action practice guidelines    • implement read for africa    • host a tri-annual afrinead symposium    • develop a dabgc consortium • using the uncrpd as a framework for afrinead research activities • 2011 afrinead symposium recommendations    • children and youth with disabilities    • education: early to tertiary    • the development process in africa: politics, poverty and indigenous knowledge systems    • economic empowerment    • health, hiv and aids and community-based rehabilitation    • holistic wellness: spirituality, sport and recreation    • research evidence and utilisation • discussion • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ this african journal of disability supplement focuses on papers presented at the third afrinead symposium in 2011. in this closing editorial, we want to give an overview of the rationale and major modes of operation of the african network for evidence-to-action on disability (afrinead) with special focus on recommendations made at the 2011 afrinead symposium. afrinead is guided and informed by the united nations convention on the rights of persons with disabilities (uncrpd) for its research themes. the issues that emerged from afrinead 2011 ranged from children and youth with disabilities; education across the lifespan; economic empowerment; the development process in africa; health, hiv and aids and community-based rehabilitation; holistic wellness; to research evidence and utilisation. disability-related stigma, the value of emancipatory research and the need to recognise a broader scope of valid methodologies were also highlighted. introduction top ↑ people with disabilities in africa are not yet experiencing meaningful change in their quality of life, access to equal rights and level of community integration, despite a favourable policy environment in some countries and a supportive research evidence base. real change and social development are still required to realise a truly inclusive society (mji et al. 2009). inclusive policies that facilitate all people to access equal human rights will assist in unlocking the potential of people with disabilities to make contributions to the development agenda in their various countries. the vision of the african network for evidence-to-action on disability (afrinead) is premised on the need to utilise existing and new knowledge and evidence from a diverse range of research topics and sources. afrinead facilitates a multidimensional, intersectoral, interactive forum that focuses on how the evidence that is generated by disability researchers is translated to action (mji et al. 2011). afrinead also affords disability researchers exposure to the complexities of the issues of equity within the disability field and the need to see disability as a social and developmental issue. afrinead is a forum that builds and sustains relationships, partnerships and cooperation between researchers and users of research evidence and knowledge. the forum provides a platform where research results are better able to target and influence policy and practice – afrinead lives in the research-policy-practice ‘gaps’ seen as ‘problems’ in other fora. realising that such ‘problems’ present the greatest opportunities for learning and enacting learning is the driving force behind afrinead. specific afrinead objectives top ↑ afrinead was inaugurated at the 2007 symposium, where five objectives were tabled to achieve its goal: 1. develop a network to facilitate and coordinate research dialogue from evidence-to-action 2. establish afrinead working groups that will identify action pathways and produce best evidence-to-action practice guidelines 3. implement research on evidence-to-action in disability (read) for africa, a methodological profiling of own local situation regarding disabled people 4. hold the afrinead symposium, a platform essential for the dissemination and utilisation of research, at least once every three years 5. link disability, academia, business, government and civil society to develop a dabgc (disability, academics, business, government and civil society) consortium. each of these objectives is briefly reviewed below before considering recommendations made at the 2011 symposium. develop a network to facilitate and coordinate research dialogue from evidence-to-action top ↑ afrinead provides space for dialogue. dialogue has been facilitated by establishing a network whose primary objective is to explore effective ways of utilising knowledge as a basis for planning action. the dialogue takes place between disabled people organisations (dpos), academics, activists, practitioners, employers and civil servants from different parts of the african continent – all focused on the need to effect positive change in the quality of lives of people with disabilities. in this space, unlike in formal debates, we do not look for winners and losers; rather, it provides a medium for finding common ground, sometimes by addressing mistrust and misconceptions. whilst the symposium indeed sought to make recommendations and decisions, dialogue provided the means to achieve consensus. importantly, afrinead is not responsible for doing research itself but rather for facilitating and coordinating an enabling environment for others to do research in relevant areas, helping to identify gaps and to fill them with useable ideas. establish afrinead working groups to produce best evidence-to-action practice guidelines afrinead’s aim was to establish interdisciplinary and multiperspective ‘working groups’ tasked with identifying action pathways and producing best evidence-to-action practice guidelines which would be published on the afrinead webpage. work groups are essential platforms for dialogue and debates, thus engendering change processes with principles of participation, consensus building and joint decision making within afrinead. the approach allows ‘cross-fertilisation’ of ideas, reduced bias, increased risk taking, high commitment, improved communication and overall, we hope, achievement of better solutions. implement read for africa the afrinead network will work with member countries to develop a methodology for profiling their own local situation regarding persons with disabilities, the services available to them, the research being conducted and areas needing investigation, and to identify facilitators and barriers for turning evidence into action. it is anticipated that countries will submit their ‘state of our nation’ analysis for publication in an e-book available on the afrinead webpage. this publication, entitled research on evidence-to-action in disability for africa (read for africa), will be an important advocacy document. the publication will act as a dissemination tool for the network’s activities, will provide opportunities for researchers to contribute to a reputable forum of high status and will act as a mechanism to link with research support. host a tri-annual afrinead symposium another platform that is essential for dissemination and utilisation of research is the afrinead symposium, held at least once every three years. this three-day africa-wide symposium focuses on specified themes of interest to network members in order to assess progress on evidence-to-action and to consolidate and strengthen dialogue the symposium is hosted on a rotation basis by member countries, with each event producing a collection of papers to be published as a special issue of a suitable international journal. the first special issue focusing on the 2007 afrinead symposium was published by the well-established international journal disability and rehabilitation. a paper in the respected disability and society subsequently outlined the outcomes of the 2009 afrinead symposium (mji et al. 2011). the african journal of disability is the second journal since the inauguration of afrinead in 2007 to table a special issue focusing on the afrinead symposium. indeed the impetus for this journal – african journal of disability – comes, at least in part, from the enthusiasm generated by energetic researchers meeting through afrinead. develop a dabgc consortium there is a need to bridge the gap between all critical stakeholders of afrinead. the desire for a mutual exchange of skills, knowledge and resources led to the development of a dabgc consortium, linking disability, academia, business, government and civil society, proposed as a platform for engaging sectors of the consortium that have a direct impact on and association with the world of people with disabilities. the proposed focus of the dabgc consortium will be to address the gaps that exist between the stakeholders’ worlds, especially those of business and people with disabilities – for instance by developing plans to facilitate the entry of qualified people with disabilities into the workplace, and supporting the vision and goals of afrinead through use of combined resources. using the uncrpd as a framework for afrinead research activities top ↑ the united nations convention on the rights of persons with disabilities (the convention or uncrpd hereafter) obligates state parties to bring people with disabilities into the mainstream of society and development. it is a legally binding document for those countries that have ratified it, and provides a universal standard of human rights for all persons with disabilities regardless of the country in which they are in (dube 2009).during preparations for the second symposium, the coordination committee resolved that to improve its relevance to its key stakeholders (people with disabilities), afrinead will use the convention as a framework that will guide the network on how to organise presentations and discussions for the symposium. the articles of the uncrpd were compressed into seven themes. the calls for abstracts have been based on these themes, with a scientific committee allocating the abstracts into these seven themes. they are: • children and youth with disabilities • education: early to tertiary • economic empowerment • development process in africa: poverty, politics and indigenous knowledge systems • health, hiv/aids and community-based rehabilitation • holistic wellness: sport, recreation, sexuality and spirituality • research evidence and utilisation and making clear recommendations for policy and practice. below we present the recommendations made at the 2011 afrinead symposium relating to these seven themes. 2011 afrinead symposium recommendations top ↑ the 2011 symposium comprised representatives from 18 african countries and seven countries beyond africa, all incorporating government, researchers, dpos, civil society and non-governmental organisations (ngo), and business. based on the seven themes extrapolated from the uncrpd, the following recommendations were made at the 2011 afrinead symposium. children and youth with disabilities presenters from this theme highlighted the value of conducting needs assessment for children with disabilities in africa. where possible, children should be included and informed (ensure appropriate informed consent and assent) in most of the decisions that affect them. at all times and where possible, self-representation of children should be encouraged. a communication freeway between parents and service providers, as well as researchers and policy makers, should be developed. parents’ experiences should be valued. capacity building needs to be done across all levels. there should be knowledge translation processes between researchers, parents and children with disabilities underpinned by the principle of family centredness. education: early to tertiary this theme focused on three critical areas: • educator training (teachers and lecturers), with emphasis on curriculum adaptation and inclusive assessment, policy awareness, and a paradigm shift from focus on only early childhood education to focus on continuing higher/life-long learning. • inclusion of disability issues in the curriculum across disciplines in higher education, including training all future professionals, policy makers and researchers in disability issues so that they can include disability at all levels, including the classroom. • responsive research, including defining a research agenda according to practical needs and best practice, children’s and families’ experiences, implementing policy, developing reliable databases (and knowledge management systems) and highlighting education as a gateway to success. three strategies were tabled to address the above: • following up on issues of discrimination and exploring ways of taking legal action • advocacy and lobbying – working with policy makers, dpos and other relevant stakeholders • writing papers based on the three key issues listed above. the development process in africa: politics, poverty and indigenous knowledge systems in this theme, issues of poverty and access – though relevant to everyone in society – were highlighted as relevant to people with disabilities in particular as they are more likely to be excluded. evidence demonstrates a significant association between poverty and disability. when addressing needs of people with disabilities, african methods of governance, such as tribal authority and imbizo, should be considered versus ‘modern’ government structures. however, traditional leaders must also be convinced that some cultural beliefs about people with disabilities are simply myths, stigmatising and negatively impacting those with disabilities. there is a need for specifically designed advocacy programmes targeting traditional leaders in rural areas to combat culture-based violent discrimination against people with disabilities. health service providers need to understand the barriers that people with disabilities face if service delivery is to be equitable and inclusive. on the other hand, people with disabilities should demand their health rights as enshrined in different statutes. dpos should link with service providers and form networks with the law fraternity to investigate policies and legal frameworks that will ensure inclusion of people with disabilities in policy development processes. afrinead needs to work with research institutes and national bureaux of statistics to make disability visible in the monitoring of national development plans and the millennium development goals. economic empowerment three recommendations were made relating to this theme: • there is an urgent need for a paradigm shift from traditional career guidance to career construction in the way persons with disabilities perceive lifelong career choices by utilising the concept of entrepreneurship. • there is a need to decentralise the provision, design, repair and maintenance of assistive devices and empower disabled people to be the custodians of this process through support from government and other stakeholders. • there is a need for african governments to domesticate the uncrpd to ensure the right to equal access to transportation, information, services and facilities. equal access can be achieved through the engagement of professionals and experts in the development of legislation, access guidelines and operationalising policy in making the environment accessible for all. health, hiv and aids and community-based rehabilitation the following three recommendations were made with regard to this theme: • building a critical mass within mainstream society on disability issues, including mainstream human rights organisations such as amnesty international and human rights watch. • investigating the discrepancy between policies and their implementation, and using this evidence supported by key quantitative data to advocate at government level. • motivating and lobbying governments to adopt community-based rehabilitation as part of their national rehabilitation policy. holistic wellness: spirituality, sport and recreation the focus for this theme was improved accessibility to all support systems that will facilitate people with disabilities to engage in activities that enhance holistic wellness, such as sport, recreation and spiritual activities. appropriate assistive devices (e.g. wheelchairs, prostheses, orthotics, hearing aids and accessible transport) are essential to achieve success in this regard. disability is not necessarily a hindrance; rather, it can it can illustrate to society how people can successfully cope with challenges. however, it is essential to improve public education on disability issues and adaptation, and develop human resources to support people with disabilities. in all of this it is important to understand the context and take into consideration indigenous knowledge systems, including local and global issues. research evidence and utilisation three key issues were highlighted for this theme: • evidence-based practice requires an alignment between research, participation and feedback from the community, for effective intervention and/or practice to flourish. • there is a need to explicitly recognise and value alternative forms of gathering information, to complement the more established and rigorous scientific methodologies. there is a plethora of rich information that needs to be collected and structured for recognition by academic circles so that it too can inform policy and be used to address identified gaps. • once research is put into action, there needs to be ongoing monitoring and evaluation to ensure that practice remains linked to evidence, informed by and appropriate to the cultural setting, to promote continued effective outcomes. discussion top ↑ afrinead is a network that has managed to bring key stakeholders to the table to discuss how research evidence can be used as a tool to facilitate the realisation of rights for people with disabilities in africa. the recommendations made at the 2011 symposium outlined above are the collective and consensual products of participants in the meeting, not just the authors of this paper. aligning research themes with the uncrpd adds credibility to afrinead in its quest for using the network as a platform to debate the impact of research evidence on realising the rights of people with disabilities in africa. the papers presented in this supplement also emerged from the seven themes extrapolated from the uncrpd. afrinead represents local research capability which finds expression when the researcher can facilitate public debate amongst researchers, non-researchers, policy makers and other end-users, highlighting the multiple interests and positions of power in society (nair & menon 2002) and also in international aid efforts (maclachlan, carr & mcauliffe 2010). afrinead has thus based its modus operandi on research that is both emancipatory and demand-led. the advantages that flowed from this approach are that it: • facilitates active participation of both demand-side and supply-side entities • provides an opportunity to work with the real needs of people with disabilities • makes it possible to vigorously interrogate the policy formulation and implementation processes • provides real opportunities for political and administrative buy-in and implementation. in reporting on the 2011 symposium it strikes us that one of the greatest barriers to equalisation of opportunities for people with disabilities are negative attitudes. symposium delegates recommended that governments develop and implement programmes to address negative attitudes, myths, beliefs and discrimination at all levels associated with the stigma of being disabled. holistic programmes such as community-based rehabilitation strategies and hiv and aids programmes, developed and funded by governments, could be used as platforms to address such attitudes. such programmes should be based on the principles of inclusion, empowerment and sustainability. finally, ignored and hidden impairments, such as intellectual disability, should be made a priority within an inclusive holistic approach to disability. conclusion top ↑ this closing editorial provides a review of some of the recommendations of the 2011afrinead symposium. a key focal point in the recommendations of the symposium is the need for a paradigm shift regarding the way researchers and research users have traditionally interacted. for people with disabilities, active participation in research and its resultant utilisation is crucial as historically they were simply perceived as ‘research subjects’. thus the 2011 symposium placed emphasis on building the capacity and confidence of people both with and without disabilities, who are researchers themselves or are participants in various stages of the disability research cycle. acknowledgements top ↑ afrinead activities have been supported by many individuals, organisations and donors. we would particularly like to acknowledge the initial and continuing support of stellenbosch university, as well as irish aid, sintef and the norwegian agency for development cooperation (norad), the southern federation for the disabled (safod), the government of the western cape african decade for persons with disability, disabled people south africa (dpsa) and the department of social services of the government of the western cape province. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions all authors were involved and shared equally in the conceptualisation and writing of the article. references top ↑ dube, k., 2009, ‘proposal for the implementation of a programme on the un convention on the rights of persons with disabilities (uncprd) 2009–2011’, unpublished report.maclachlan m., carr s.c. & mcauliffe, e., 2010, the aid triangle: recognizing the human dynamics of dominance, justice and identity, zed, london. mji, g., gcaza, s., swartz, l., maclachlan, m. & hutton, b., 2011, ‘an african way of networking around disability’, disability and society 26(3), 365–368. http://dx.doi.org/10.1080/09687599.2011.560419 mji, g., maclachlan, m., melling-williams, n. & gcaza, s., 2009, ‘realising the rights of disabled people in africa: an introduction to the special issue’, international journal of disability and rehabilitation 31(1), 1–6. http://dx.doi.org/10.1080/09638280802280288 nair, k.n. & menon, v., 2002, capacity building for demand-led research: issues and priorities, policy management brief no. 14, ecdpm, maastricht, available from http://www.ecdpm.org/web_ecdpm/web/content/content.nsf/0/af171d40dee75593c1256db00029b363?opendocument#sthash.2liwipxl.dpuf introduction method discussion conclusion acknowledgements references about the author(s) nurul h. rofiah the institute for diversity and inclusion, hiroshima university, higashi-hiroshima, japan center of disability studies and service, ahmad dahlan university, yogyakarta, indonesia norimune kawai the institute for diversity and inclusion, hiroshima university, higashi-hiroshima, japan dara sudiraharja department of islamic education, uin sunan kalijaga, yogyakarta, indonesia citation rofiah, n.h., kawai, n. & sudiraharja, d., 2025, ‘pesantren and inclusion: bridging religion and disability in islamic education in indonesia’, african journal of disability 14(0), a1741. https://doi.org/10.4102/ajod.v14i0.1741 note: the manuscript is a contribution to the topical collection titled ‘disability, spirituality, and belonging’, under the expert guidance of guest editors, dr chioma ogochukwu ohajunwa, dr nafisa mayat and dr adele ebrahim. opinion paper pesantren and inclusion: bridging religion and disability in islamic education in indonesia nurul h. rofiah, norimune kawai, dara sudiraharja received: 09 may 2025; accepted: 19 aug. 2025; published: 25 sept. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction pesantrens are a cornerstone of islamic education in indonesia, functioning as residential learning institutions where students [santri] live and study under the guidance of religious scholars [kyai]. characterised by distinctive features such as communal living, intensive study of classical islamic texts [kitab kuning] and an emphasis on moral and spiritual formation, pesantrens have been established for multiple generations and remain deeply embedded in the country’s educational landscape (iqbal & akram 2020; islam & aziz 2020; hefner 2021; kadir & umiarso 2023). in recent decades, pesantrens have undergone significant transformations, expanding beyond their traditional role to incorporate formal and vocational education, community outreach and social development initiatives. they have increasingly played a crucial role in advancing inclusive islamic education by adapting curricula, facilities and teaching methods to accommodate students from diverse ethnic, cultural, social and ability backgrounds (afrianty 2019; yusak, madrah & ardi 2023). these adaptations reflect the broader influence of pesantrens on indonesian muslim communities, shaping both religious identity and societal values (ali 2011; van wichelen 2010). as a result, pesantrens today are not only religious institutions but also dynamic centres of learning that bridge faith, education and inclusion (nilan 2009; pohl 2006). while pesantrens have long served as religious and moral education centres, their evolving role in accommodating persons with disabilities (pwd) marks a significant step towards inclusive islamic education. this connection between pesantrens and disability inclusion is central to this article, ensuring that the discussion integrates both religious tradition and the rights of pwd from the outset. islamic education is a significant component of indonesian society because it is responsible for shaping the character and religious values of individuals and offering both fundamental and advanced educational guidance using an islamic framework (chanifah et al. 2021). pesantrens, as islamic educational institutions, have a history dating back thousands of years in indonesia (suyatno et al. 2022). they offer comprehensive education (anshori & pohl 2022). furthermore, pesantrens in indonesia’s multicultural setting contribute to preserving islamic traditions and principles that have been developed for generations (chaerunisa, rizkia & firdaus 2019; mujahid 2021). pesantrens accomplish this by incorporating native cultural elements into their islamic teaching methods and offering education concerning the core principles of islam, memorisation of the quran [tahfiz], interpretation of the quran [tafsir], hadith, islamic history and other aspects of the religion (ma’arif 2018; syukur 2019). additionally, pesantrens also prioritise the cultivation of their pupils’ character and morals through the instruction of islamic principles, such as integrity, self-control, accountability and empathy (sulhan & hakim 2023). pesantrens promote social inclusivity by admitting students from many origins, including those who are impoverished, and contribute to the national education system by providing instruction in secular disciplines, such as social sciences, natural sciences and languages (latif & hafid 2021). pesantren institutions actively engage in social initiatives and community empowerment, fostering student involvement in community and public services and local economic growth (saifulloh 2021). this contributes to promoting social inclusion and sustainable development. however, it is worth mentioning that there are various types of pesantrens with different approaches and areas of emphasis. certain pesantrens adhere more strictly to traditional practices, whereas others are more receptive to educational advancement or are modern pesantrens (hadi 2022). nevertheless, pesantrens continue to be a significant component of the islamic education system in indonesia, generally fostering inclusion and religious principles. in 1997, indonesia enacted its first legislation to safeguard the rights of pwd – ensuring equal access to education, employment, healthcare and public facilities, as well as protection from discrimination – and to outline the obligations of relevant stakeholders to uphold these rights (afrianty 2020; ediyanto et al. 2019; nurhayati 2020). this legislation, which facilitates the implementation of inclusive education, consists of law no. 4 of 1997 on pwd. however, this law was invalidated and replaced by law no. 8 of 2016 and law no. 19 of 2011, which ratified the convention on the rights of pwd (rofiah & suhendri 2023). numerous parties, including pesantren institutions, began actively supporting these concerns, because many individuals with disabilities expressed a keen desire to pursue studies at these institutions. additionally, the latest regulation, the minister of religious affairs regulation number 1 of 2024, concerning adequate accommodation for students with disabilities in educational institutions under the ministry of religious affairs, strengthens these efforts. article 2, paragraph 2 of this regulation mandates that the minister provide adequate accommodation for students with disabilities in madrasahs, religious higher education institutions, religious education units and pesantrens. this article examines pesantren’s contribution to fostering inclusive islamic education in indonesia. it explores their historical background, place within the national education system and guiding principles, as well as the role of the kyai in shaping inclusive practices. the article further analyses opportunities for education for all, including pwd, focusing on religious participation, adequate accommodations in education and worship and modifications in learning methods. method this study’s research method is a narrative literature review. it summarises existing literature and offers a rich and nuanced interpretation. this approach allows the researcher to develop a comprehensive understanding of the role of pesantren in supporting inclusive education for pwd. this method was chosen to gather, analyse and synthesise relevant material on religion and disability in islamic education in indonesia. the narrative literature review enables a thorough study of current literature while also considering the historical, social and cultural contexts that shape inclusive education in pesantren. this method was selected for its adaptability to different forms of literature and its capacity to review a complex topic comprehensively. the literature gathering procedure involved searching multiple academic databases, such as google scholar, jstor and university libraries, to identify pertinent sources. the study utilised keywords such as ‘inclusive education in islamic boarding schools’, ‘disability in islamic education’ and ‘pesantren practices in inclusivity’ to locate relevant publications, books and research reports. the selected literature explicitly examines the concept of inclusion in islamic education, particularly in pesantren, and explores the correlation between religion and disability. the literature analysis was conducted by identifying prominent themes that emerged from the diverse sources. the material was classified according to themes. discussion pesantren in the indonesian education system pondok, dayah, kobong, surau, meunasah and other similar terms – collectively known as pesantren – are communal establishments founded by individuals, foundations, islamic community organisations or the community itself (isbah 2016). pesantrens aim to foster devotion and reverence towards allah swt., develop virtuous behaviour and uphold the teachings of islam as a source of compassion for all beings [rahmatan lil’alamin] (masrukhin & supaat 2018; na’imah & nurdin 2017). the cultivation of humility, tolerance, balance, moderation and other noble values in indonesia reflects this vision (mashuri, futaqi & sulhan 2024). these objectives are achieved through education, islamic preaching [da’wah], role modelling and community empowerment within the indonesian context. pesantren education refers to the educational system implemented in these specialised islamic boarding schools (lathifah, setyaningsih & wulandari 2022). conducted within the pesantren environment, the curriculum is tailored to the institution’s unique character (ekaningrum et al. 2018), primarily based on traditional islamic texts [kitab kuning] and focused on islamic studies [dirasah islamiah]. the educational model revolves around the muallimin [islamic teachers] who guide students in their learning. santri are students who pursue religious knowledge in pesantrens (karim et al. 2022), while kiai – also referred to as tuan guru, anre gurutta, inyiak, syekh, ajengan, buya, nyai and other regional titles – are respected islamic scholars who serve as educators, role models and custodians of pesantren traditions (sari & dawud faza 2024; mukri & tamam 2021). as educators, kiai play a central role in preserving pesantren culture and distinctiveness (dian et al. 2024; yusuf & taufiq 2020). this cultural identity includes nurturing islamic principles such as benevolence towards all beings [rahmatan lil’alamin], tolerance, balance and moderation, anchored in nationalism and guided by pancasila and the 1945 constitution of the republic of indonesia. within each pesantren, the kiai holds authority over institutional governance, including educational policies, curriculum direction and community rules – resulting in variations in policies and practices across pesantrens (dakir, fauzi & anwar 2020). in indonesia’s national education system, pesantrens play a crucial role in providing islamic education (sulhan & hakim 2023). their distinctive attributes include a curriculum rooted in classical islamic literature, the use of arabic as a medium of instruction and pedagogical approaches that prioritise character and moral formation (yaqin, rozi & sham 2020). according to the ministry of religious affairs, there are approximately 22 115 pesantrens in indonesia, with over 3 778 083 santri and 412 720 teachers (kiai or ustadz) (indonesian ministry of religious affairs 2022). historically, pesantrens have functioned not only as educational institutions but also as centres for da’wah and community empowerment. in recognition of these three core functions, the ministry promotes the policy slogan ‘preserving tradition, guarding innovation’. over time, many pesantrens have integrated non-religious subjects such as mathematics, english and science into their curricula (azizah, muchtar & putra 2022; isbah 2020). some also operate government-recognised formal education programmes, including vocational and senior high schools (maulida & ali 2023; yusuf & taufiq 2020). for many indonesians, pesantrens provide an alternative for deeper, specialised religious instruction (a’la & rahman 2022) and offer educational access in rural or underserved areas (al idrus, herlina & ibrahim 2023). acknowledging their importance, the indonesian government has introduced initiatives such as the ‘empowered pesantren’ programme to improve their educational standards (hudaefi & heryani 2019). to remain relevant in the modern era, pesantrens must continue to innovate while preserving their cultural and religious heritage, ensuring that they meet both contemporary educational demands and societal needs. these distinctive characteristics not only preserve pesantren traditions but also create opportunities to adapt their practices to meet the needs of students with disabilities, making them potential leaders in advancing disability-inclusive education in indonesia. principles of pesantren pesantrens are established based on core concepts that serve as the conceptual basis and approach for educating and fostering students. geertz (1976) coined the term ‘santri’ to designate a socio-cultural group within the muslim community, contrasting it with other groups such as ‘abangan’ and ‘priyayi’. geertz identifies two primary distinctions between the santri and abangan factions (nashir & jinan 2018). firstly, they differ in their adherence to the fundamental teachings of islam as outlined in the quran and hadith. secondly, they diverge in perspectives on social structures and their respective roles in society. the santri group prioritises the everyday practice of islamic teachings as its core principle, while the abangan group places greater emphasis on the traditional traditions of their community with less regard for religious ideas. currently, the term santri is used to denote individuals who engage in religious studies within pesantren institutions (halid et al. 2024; iqbal 2023). the primary tenet of pesantrens is to enhance the comprehension of islamic doctrines and mould pupils into pious individuals. in pesantrens, teaching follows a conventional approach that relies on classical islamic sources. in addition to enhancing islamic teachings, pesantrens cultivate moral values and character in students through everyday education and practical encounters (akmaliyah et al. 2021; azra et al. 2007). their lifestyles and activities demonstrate a strong emphasis on discipline and high independence, as seen in their ordered and structured approach. pesantrens also facilitate the development of pupils’ social skills in diverse settings, instructing them to value diversity and engage in cooperative efforts (nawas, darmawan & maadad 2024). additionally, pesantrens offer cost-effective education to the community, typically at modest prices and often with subsidies (duncan 2020). they provide educational opportunities for communities in rural areas as substitutes for conventional schools, delivering easily accessible religious education to people from all social strata (maunah 2009). pesantren education offers explicit guidance in moulding pupils into individuals with virtuous character, religious instruction and constructive societal contributions (budiharso, bakri & sujito 2023). indonesian pesantrens possess various characteristics that differentiate them from other institutions. madrasas are traditional islamic educational institutions that focus on teaching classical islamic books using arabic as the language of instruction and employing a teaching technique that prioritises character and moral development (akmaliyah et al. 2021). furthermore, the milieu of pesantrens is highly islamic, characterised by prevalent religious practices such as collective prayers, the adhan [call to prayer] and adherence to islamic dress codes. additionally, pesantren institutions feature a robust religious curriculum that consistently prioritises the study of foundational islamic writings, such as the quran, hadith, fiqh and tafsir. pesantrens foster moral values and character development through everyday education and practical encounters, imparting lessons on proper conduct, discipline and the importance of respecting others (sulhan & hakim 2023). students must demonstrate a strong sense of self-reliance and self-control, as seen in their well-organised and disciplined ways of life and pursuits. pesantrens foster the acquisition of social skills in diverse settings, instruct children to value diversity and collaborate effectively in groups (maunah 2009). by embedding these principles within their educational philosophy, pesantrens can ensure that inclusivity – especially for pwd – is a natural extension of their core values. role of a kyai in pesantrens a kyai is an educator with expertise in islamic religious knowledge who serves as a figure, role model and caretaker of pesantrens (futaqi & mashuri 2022). kyais are highly respected by students, the community and the pesantren environment (kurniawan et al. 2022). the presence of a kyai in the pesantren is crucial to its success in producing a generation of young people who are faithful, morally upright and prepared to face future challenges (arif 2016; kastamin et al. 2021). to manage a pesantren, a kyai must meet certain qualifications, as stipulated in the law of the republic of indonesia number 18 of 2019 concerning pesantren article 5, paragraph 2, letter [a]. these qualifications include pesantren education, higher islamic religious education and expertise in islamic knowledge. as the highest leader of pesantrens, kyais serve as a caretaker, figures and role models in the administration. in carrying out his duties, a kyai can be assisted by educators and educational staff with competencies according to the needs of the pesantren and pesantren administrators who support the kyai’s role in administrative management. a kyai functions as a teacher responsible for instructing students in islamic teachings and other knowledge, such as arabic, the quran, hadith, fiqh, tafsir and islamic history, as well as for instilling islamic moral and ethical values (roslan mohd nor & malim 2014). kyais also serves as spiritual leaders, guiding students on matters related to islamic teaching, helping them deal with spiritual issues and providing advice and motivation (khoirunnisa & atabik 2024; yaqin et al. 2020). additionally, kyais act as a social guide, assisting students in developing positive attitudes such as independence, discipline and responsibility and helping address social issues both within and outside pesantrens (islam & aziz 2020). kyais also preserve pesantren traditions by maintaining and upholding long-established values and cultures while developing and adapting the pesantren to modern advancements (sakai & isbah 2014). finally, kyais serve as the leader and manager of pesantrens and are responsible for running them effectively and efficiently, organising educational activities and fostering cooperation with the surrounding community to support inclusive environment (stewart-ginsburg et al. 2020). the kyai’s authority and leadership are therefore critical not only for maintaining religious traditions but also for initiating and sustaining inclusive practices that welcome and support students with disabilities. pesantren and disability inclusion pesantrens have great potential to support the government in expanding access to education for all indonesian children, including those with disabilities, through deliberate disability inclusion initiatives. these initiatives go beyond simply allowing enrolment; they involve adapting teaching methods, curricula, facilities and social attitudes so that students with disabilities can participate fully in both learning and community life. most pesantrens in indonesia offer education free of charge or at a very affordable cost, enabling children from underprivileged families – and particularly those with disabilities, who often face additional barriers – to pursue their studies without significant financial burden (rohman & muhtamiroh 2022; subaidi et al. 2023). in addition to widening access, pesantrens implement character-based education and moral values that align with the government’s goal of building strong character and moral integrity among the younger generation while also nurturing empathy, respect and inclusion for all learners. beyond religious education, pesantrens equip students with practical skills such as writing, reading and speaking in arabic and english (pohl 2006; rohman, 2022). these competencies enhance future opportunities for all students, including pwd, by enabling them to participate more fully in society and the workforce. government support through programmes such as the pesantren development program and operational education assistance has further strengthened pesantren capacity, ensuring that quality education is more widely available, even in rural and underserved areas. partnerships between pesantrens and formal schools can further expand inclusive educational opportunities (budiharso et al. 2023). collaboration like student-teacher exchanges, joint training, and curriculum sharing – can help pesantrens adopt more inclusive teaching practices that respond to the diverse needs of learners. with sustained cooperation between pesantrens and the government (kosim 2015; safiudin, qurtubi & masfu’ah 2023), pesantrens can transform into fully inclusive educational institutions that welcome and support students with disabilities. recognising these opportunities, pesantrens can make a range of contributions that directly support the inclusion and empowerment of students with disabilities. socially, pesantrens can foster inclusive interactions by integrating students with disabilities into all aspects of daily life, reducing stigma and building a strong sense of belonging through shared living and communal activities. psychologically, a supportive pesantren environment can help strengthen confidence, resilience and self-esteem among students with disabilities, supported by the moral and spiritual guidance of kyais and teachers as well as encouragement from peers. educationally, pesantrens can adapt curricula, teaching strategies and assessment methods to meet diverse learning needs, employing differentiated instruction, assistive technology and flexible learning schedules so that students with disabilities can achieve their learning goals. physically, they can provide accessible infrastructure such as ramps, disability-friendly toilets, safe transportation and appropriate classroom layouts, as well as assistive devices to support participation in all activities. spiritually, pesantrens can ensure full participation in religious practices by providing braille qurans, sign language interpretation and physical assistance for ablution and prayer, enabling students with disabilities to engage meaningfully in the spiritual life of the institution. to implement these contributions effectively, pesantrens can invest in training and professional development for teachers and administrators to strengthen their capacity in inclusive education. collaborations with social work organisations that focus on disability empowerment can further enhance resources and support systems (maftuhin 2023). additionally, designing specialised curricula tailored to the needs and characteristics of students with disabilities will ensure that their education is both relevant and meaningful. by fostering inclusive values and modelling equitable practices for the wider community, pesantrens can raise awareness of the importance of disability inclusion in education. in doing so, they not only fulfil their traditional role as centres of faith and learning but also contribute significantly to the indonesian government’s vision of inclusive education that provides equitable access for all children. worship for people with disabilities in pesantren worship is a central element of life in pesantrens, and ensuring that pwd can participate fully in religious activities is a key component of disability inclusion. pesantrens must provide access and opportunities for people with disabilities to worship appropriately and without obstacles. one important step is to provide adequate accessibility facilities, such as ramps, lifts and toilets, that people with disabilities can use (badawy, jawabrah & jarada 2020; petersen & piletic 2006). these facilities are essential for ensuring that all students, regardless of their physical condition, can easily and comfortably access various areas of the pesantren (amin, zuki & akhir 2019). additionally, pesantrens should provide explanations and guidance to students, especially those who memorise the quran, so that they can perform worship well and understand the meaning of each verse they read (kosim 2015; sauri, nursyamsiah & nurbayan 2018). detailed explanations and directed guidance will help pwd to feel more confident about their worship. it is also crucial for pesantrens to have adequate facilities and infrastructure to support people with disabilities in performing worship (nakua et al. 2017). these include wheelchairs, braille qurans and audio qurans. these resources will greatly assist people with disabilities in participating in worship activities independently and comfortably. moreover, the active involvement of pesantren staff and administrators in providing support and assistance to people with disabilities who wish to worship is essential (rusmini et al. 2023). this support can include helping them reach the place of worship, preparing the necessary equipment and ensuring they can worship without obstacles. pesantrens also need to teach and guide other students in supporting and assisting people with disabilities in performing worship, such as helping to carry and assist people with disabilities in performing ablutions or prayers. this guidance builds student empathy and cooperation and creates a more inclusive environment. in addition to physical support, pesantrens must provide psychological and social support to people with disabilities (shikarpurya & singh 2021). this includes helping them overcome their lack of confidence or self-esteem in performing worship. such support can be provided through counselling, mentoring and specially designed motivational programmes. with comprehensive support, pesantrens can become inclusive institutions that provide opportunities for everyone, including people with disabilities, to worship without obstacles. for example, pesantrens can provide seating for persons with mobility disabilities, ensuring that they can easily perform ablution (riwanto et al. 2023). these steps can ensure that all the students, regardless of their physical condition, can perform worship with full devotion and without difficulty. by combining accessible facilities, inclusive worship resources and a culture of mutual support, pesantrens can ensure that spiritual life is accessible to all, strengthening their role as inclusive religious institutions. adequate accommodations and learning modifications in pesantren providing adequate accommodations and learning modifications is essential for achieving disability inclusion in pesantrens. this means ensuring that pwd have equitable access to both educational and religious activities, free from physical, social and instructional barriers. as part of an inclusive approach, pesantrens must go beyond basic compliance and intentionally design their environments, curricula and teaching practices to support the diverse needs of all learners (riwanto et al. 2023). physical accessibility is the foundation of inclusion. pesantrens can provide disability-friendly facilities such as ramps, lifts, accessible toilets and dedicated ablution areas for pwd, ensuring that they can move freely and comfortably throughout the campus (aji, suhardi & iftadi 2022; lestari & raodah 2020). for students with visual impairments, braille qurans and tactile learning materials are crucial (taufik et al. 2024), while environmental modifications such as adjustable seating, sufficient lighting and contrasting colours can improve orientation and comfort for all (amandhila et al. 2023; wright et al. 2019). these modifications not only assist people with disabilities but also provide comfort for all users. technology is another valuable tool for helping people with disabilities to access education and worship (riwanto et al. 2023). using braille devices, hearing aids and screen reader software enables students to learn and worship more effectively and independently. this helps people with disabilities overcome the barriers they may face in learning and worship. the use of sign language is a crucial step in creating an inclusive environment (murray, de meulder & le maire 2018). providing sign language interpretation to persons with hearing disabilities ensures that they can follow lessons and worship activities without communication barriers. this respects and facilitates their communication needs. by providing appropriate accommodations, everyone, including those with special needs, can fully access and benefit from education and worship without barriers (sango & forrester-jones 2017). these accommodations and modifications do not only benefit pwd; they enhance the learning environment for all students by fostering empathy, collaboration and respect for diversity. in line with the national education goals and the role of pesantrens as institutions that embody rahmatan lil’alamin [a mercy to all worlds] values, such inclusive practices strengthen pesantrens’ contribution to building an equitable education system (maksum, asy’arie & aly 2020). by embedding these measures into their daily operations, pesantrens can position themselves as leaders in advancing disability-inclusive education in indonesia. conclusion pesantrens are key institutions in advancing inclusive islamic education in indonesia, increasingly bridging the gap between religion and disability by welcoming students from diverse backgrounds, including those with disabilities. central to this transformation is the role of kyais, who preserve religious traditions as educators and spiritual leaders while guiding adaptations that foster empathy, cooperation and inclusion. their leadership ensures pesantrens remain both relevant and responsive to contemporary needs. this commitment is reflected in various accommodations, such as accessible facilities, adaptive teaching methods and supportive technologies, that enable full participation of pwd in educational and religious activities. through these efforts, pesantrens not only enhance the learning experiences of pwd but also promote broader values of social cohesion and mutual respect. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. the author, n.h.r., serves as an editorial board member of this journal. n.h.r. has no other competing interests to declare. authors’ contributions n.h.r. contributed to the conceptualisation, methodology, writing the original draft, review, and editing, supervision and funding acquisition. n.k. contributed to the conceptualisation and supervision. d.s. contributed to writing, review, editing, and funding acquisition. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated 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ardi, m.n., 2021, ‘islamic education for a resilient faith communities: a study of religious literacy practices in pesantren’, indonesian journal of islamic literature and muslim society 6(2), 39–57. https://doi.org/10.22515/islimus.v6i2.5949 yusuf, m.a., & taufiq, a., 2020, ‘the dynamic views of kiais in response to the government regulations for the development of pesantren’, qijis: qudus international journal of islamic studies 8(1), 1–32. https://doi.org/10.21043/qijis.v8i1.6716 abstract introduction method results and discussion barriers to physical activity facilitators to physical activity strengths and limitations implications conclusion acknowledgements references about the author(s) candace vermaak division of biokinetics, department of sport science, faculty of medicine and health sciences, stellenbosch university, cape town, south africa suzanne ferreira institute of sport and exercise medicine, department of sport science, faculty of health sciences, stellenbosch university, cape town, south africa elmarie terblanche division of sport science, department of sport science, faculty of medicine and health sciences, stellenbosch university, cape town, south africa wayne derman institute of sport and exercise medicine, department of sport science, faculty of health sciences, stellenbosch university, cape town, south africa international olympic committee research center, cape town, south africa citation vermaak, c., ferreira, s., terblanche, e. & derman, w., 2022, ‘physical activity promotion in persons with spinal cord injuries: barriers and facilitators in low-resource communities’, african journal of disability 11(0), a988. https://doi.org/10.4102/ajod.v11i0.988 research project regestration: project research number: hs1028/2014 original research physical activity promotion in persons with spinal cord injuries: barriers and facilitators in low-resource communities candace vermaak, suzanne ferreira, elmarie terblanche, wayne derman received: 10 dec. 2021; accepted: 10 apr. 2022; published: 09 june 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: a spinal cord injury is a devastating and life-changing event that presents the affected individual with multiple challenges throughout life. physical activity can help mitigate some of these challenges; however, in low-resource communities where opportunities for physical activity are scarce, these challenges are often exacerbated and multiple. objective: this study aimed to identify the barriers and facilitators to physical activity, specifically in individuals with spinal cord injuries, in low-resourced communities. methods: a total of 57 adults (> 20 years) with a spinal cord injury living in the western cape, south africa completed the self-developed research questionnaire. results: a total of 289 barriers and 290 facilitators were reported. the most frequently reported barriers were lack of transport (n = 35), impairment type (n = 32), lack of trained volunteers and appropriate programmes (n = 19 each) and lack of information received from therapists following discharge (n = 10). the most frequently reported facilitators were support from family (n = 38), the ‘enjoyment’ of physical activity and the fact that ‘it made me feel good’ (n = 37); safe and accessible facilities were reported by 25 participants and 12 participants reported that higher-quality programmes and better-trained staff would help them to be more physically active. conclusion: individuals with a spinal cord injury face many barriers in being physically active. yet it is evident that people with spinal cord injuries in low-resourced communities are eager to participate and improve their health and physical function. however, this will only realise if practitioners reduce the barriers to access, provide relevant training to staff and volunteers, educate their patients about the importance of physical activity post discharge, and create tailored programmes in safe and accessible community facilities. keywords: physical activity; spinal cord injury; barriers; facilitators; low resource communities. introduction a spinal cord injury (sci) is a devastating and life-changing neurological event with far-reaching impact on the lives of the patient, their family and caregivers (livecchi 2011; mothabeng 2011). physical activity (pa) has the potential to mitigate the detrimental effects of a sci, for example, by reducing musculoskeletal and neuropathic pain, increasing functional capacity and decreasing incidence of cardiovascular disease (williams, smith & papathomas 2014). in addition, participation in pa alleviates the stigma experienced by persons with disabilities (pwds) regarding competence (martin 2013). despite the benefits, people with a sci (pwsci) remain the most physically inactive segment of society (williams et al. 2014). it is therefore imperative that the factors that play a role in the promotion of a physically active lifestyle in pwsci be fully understood. people with a sci require the supportive environment of a multidisciplinary team to guide them whilst they adapt to their disability. whilst this supportive environment is usually present during inpatient rehabilitation and the early stages of postdischarge, there is a gap in the provision of services that can assist individuals with community reintegration, health and well-being (vermaak 2016). this is particularly true in low-resource communities. in south africa, limited research has been conducted on pa in pwds and specifically, in pwsci. spinal cord injuries are increasing in south africa and are mainly caused by assault (60%) (joseph≈et al. 2017). with the rise in incidence, there is also an improved rate of survival because of medical and technological advances; thus, there is an increased need for exercise rehabilitation services. however, south africa has a limited number of rehabilitation facilities catering for pwsci to facilitate the final phase of rehabilitation, namely community reintegration (joseph et al. 2017). health and fitness professionals have the potential to impact a large sector of the south african population that is underserved in terms of exercise rehabilitation or pa programmes. an important first step is to understand the barriers and facilitators of pa. this is important not only in programme design and development but also in appropriate facility and community design that allows for the inclusion of pwsci. the barriers to pa amongst pwd have been researched extensively; however, the majority of research has been conducted in developed countries (kehn & kroll 2009; martin ginis et al. 2008; rimmer et al. 2004; shakespeare & kleine 2013; vissers et al. 2008; wright et al. 2019), yet 80% of the world’s population live in developing countries. furthermore, research on the facilitators of pa is limited as data are derived from developed countries (united states of america and europe) and not necessarily translatable to the low-resourced environments in developing countries. the aim of this study was thus to identify the barriers and facilitators of pa in pwsci within a low-resourced south african context. to our knowledge, not much research has been conducted on the topic in africa. in addition, the perspectives from the participants contribute to the existing body of knowledge available within this population. moreover, the newly acquired knowledge can be applied in the development of strategies for future partnerships and programme development in an effort to ease the burden on an already pressurised healthcare system (joseph et al. 2017) and contribute to a more inclusive society informed by the social model of disability. method study design a descriptive research survey on pwsci was conducted in the western cape province of south africa. a questionnaire was designed based on an extensive review of the literature regarding barriers and facilitators to pa, as identified by pwsci and pwd. the review included studies utilising focus groups (rimmer et al. 2004), semi-structured interviews (conchar et al. 2014), surveys (scelza et al. 2005) and questionnaires (jaarsma et al. 2014). the research instrument and method of analysis were based on and developed from the theory of planned behaviour (tpb). whilst many theories have been utilised within the context of pa participation and health behaviours to explain motivation and adherence (gulley & boggs 2014; mcneil, kreuter & subramanian 2006; prochaska & velicer 1997; ryan & patrick 2009), tpb was chosen for this study based on previous studies using similar categories. the tbp involves two parts, namely consideration of the individual’s own attitudes towards the behaviour and consideration of relevant behavioural norms (bozionelos & bennett 1999). personal attitudes are the measures of beliefs about the behaviour under consideration and the influence on those beliefs (bozionelos & bennett 1999). factors that influence behaviour in this regard include obstacles or hindrances, experience, resources and opportunities. behavioural norms refer to the influence of others on a particular behaviour and the individual’s wish to comply with the expectations of others. this includes the opinions of family members and healthcare professionals, who both play an important role, as illustrated in the results and discussion section. these aspects have been taken into consideration when grouping the barriers and facilitators in the development of the research questionnaire and the data analysis. the research questionnaire included sections on personal history, chronic and secondary conditions, injury, rehabilitation history and previous (prior to injury) and current pa levels, as well as reasons for being physically active (facilitators) and inactive (barriers). the majority of the questions were multiple choice, with some requiring ‘yes’ and ‘no’ answers. to solicit individual experiences and perspectives, space was provided on the questionnaire to capture any additional information regarding the barriers and facilitators identified by participants. study population, research setting and data collection the study population included pwscis residing in three low-to-middle-income communities within the western cape, namely strand, macassar and mitchells plain. the study participants were recruited from the western cape rehabilitation centre (a formal government rehabilitation setting) and senecio (a nonprofit organisation) operating in low-to-moderate-income communities. the questionnaire was piloted in four pwscis from different ethnic backgrounds. minor changes were implemented based on the experience and feedback to the research team. participants were recruited on a voluntary basis through identified agents, using convenience sampling. the exclusion criteria were persons with motor or sensory loss who had not been diagnosed with a sci, participants who had not completed the informed consent form and participants who were younger than 18 years. a total of 57 participants completed the questionnaire. data analysis the data were captured on a spreadsheet and analysed using excel 2007. descriptive statistics regarding the sociodemographic and injury profile data were reported as frequencies and percentages. the data on the barriers and facilitators were also reported as frequencies and percentages of the total number of barriers or facilitators selected by the participants. the results were grouped according to the tpb into personal, environmental, social and programme or policy barriers and facilitators. ethical considerations the protocol was approved by the institutional ethics committee for human research (humanoria hs1028/2014). all participants were required to provide informed consent. information gathered from the questionnaires was kept confidential to protect participants’ identities. hard copies of the completed questionnaires were scanned and saved in a password-protected file. access to these questionnaires was only granted to the research team. ethical clearance to conduct this study was obtained from the institutional ethics committee for human research (humanities), stellenbosch university (no. rec-050411-032). results and discussion the sex distribution of the 57 participants was 49 men and 8 women (ratio 6:1). the average age of the participants was 38 (± 13) years, with the youngest participant being 20 and the oldest 84 years old. most of the participants were between 20 and 30 years old (n = 15). the majority of the participants were paraplegic (35/61%) and most of the participants sustained their injuries through violence (44%). gunshot or stab wounds (total 37%) represented most of the reported violent crimes. the causes for gunshot or stab wounds ranged from personal assault to robberies and gang violence. the remaining 7% were caused by blunt trauma. motor vehicle accidents accounted for 19% of the injuries. eleven percent of the injuries were caused by sporting accidents, including a diving incident, and 9% resulted from tuberculosis of the spine. most of the participants were hospitalised within the western cape after their injury, with only 4% being hospitalised in the eastern cape. a total of 55 of the participants were hospitalised in government hospitals and only two pwsci in a private hospital. barriers to physical activity a total of 289 barriers to pa were reported in this study and are shown in table 1. the most common barriers were environmental (n = 101), followed by personal barriers (n = 95), programme or policy barriers (n = 73) and lastly social barriers (n = 20). table 1: number and nature of reported barriers to physical activity. environmental barriers environmental barriers constituted the largest group in this study (n = 101), of which lack of transport was identified as the most common barrier (35%). another important barrier was the lack of suitable facilities for physical activities (32%), as well as inaccessibility of facilities (9%). the findings of this study are consistent with the international research from both adequately resourced (developed) and low-resourced (developing) environments. lack of transport is consistently indicated as the primary barrier, followed by lack of accessibility or lack of facilities across all types of environments (crawford & stodolska 2008; scelza 2005; silver et al. 2012:105; the life group 2011). south africa, in general, lacks an extensive, efficient and safe public transport system. this affects pwd to a large extent and more specifically pwsci, who are dependent on their wheelchairs for transport. this has an important ‘knock-on’ effect with respect to other variables becoming barriers to pa, such as the weather (17%), which is especially problematic during the rainy season and during summertime when day temperatures regularly exceed 30°c. furthermore, adverse environmental conditions expose pwsci to illnesses such as respiratory tract infections and skin conditions, for example, pressure sores over insensate areas, which are aggravated or infected by wet clothing. inconvenient location of the facilities where programmes are offered was identified as a less important environmental barrier (7%); however, the lack of transport compounds this problem, as few individuals have the means to reach these locations independently. these challenges highlight the importance of adequate and accessible transport for pwsci and further emphasise the additional barriers that pwsci face, especially in low-resourced communities. personal barriers according to the study participants, the extent of their impairment was the primary personal barrier to participating in pa (34%). most of the participants were paraplegics, which explains why this was the most reported barrier (22%). this finding is inconsistent with the literature, as, to our knowledge, no previous study reported impairment type as a barrier to pa (tawashy et al. 2009). perhaps our finding can be attributed to the participants’ perceptions and lack of knowledge about their abilities. furthermore, it is possible that in a developing country, people perceive their own injury, rather than society and the environment, as a barrier, a view that emphasises the influence of the medical model of disability as compared with the social model. other reported barriers were lack of finances, lack of skill or fitness and lack of knowledge about pa, which are consistent with that reported in previous research (crawford & stodolska 2008; rimmer et al. 2004; shakespeare & kleine 2013; tasiemski et al. 2004). interestingly, able-bodied adults in south africa reported similar barriers to pa, namely lack of time, health issues and lack of knowledge (jaarsma et al. 2014; louw, van biljon & mugandani 2012). despite these common personal barriers, pwd face additional barriers, which should be taken into consideration when planning and implementing pa programmes. secondary medical conditions made up 17% of the reported personal barriers and included bladder infections (50%), pressure sores (31%) and pain (19%). these findings are consistent with the literature (silver et al. 2012; van den berg-emons et al. 2008). secondary conditions are often the cause of rehospitalisation, subsequent bed rest and further physical inactivity. it is therefore important that these barriers be eliminated to improve health and well-being of pwsci (silver et al. 2012). in this study, lack of time was considered the least important personal barrier (5%). this finding is in contrast with observations in the uninjured population in south africa (jaarsma et al. 2014) and in pwsci in countries with better resources. conceivably, our finding may be a reflection of the high unemployment rate amongst the participants, which is a testament to the low labour market absorption of pwd in south africa (census 2011). o’neil and dyson-hudson (2020) reported high variability in the employment rates of pwd. for example, in the united states of america, postinjury employment rates ranged from 21% to 67% (lidal, huynh & biering-sørensen 2007). although none of the participants indicated employment as a barrier to pa, various barriers prevent pwsci from working (o’neil & dyson-hudson 2020). programme or policy barriers the most common reported programme barrier in this study related to human interaction (41%). this included lack of trained volunteers (26%), lack of staff capacity (11%), lack of guidance by staff (3%) and negative attitudes by staff (1%). other barriers mentioned were lack of appropriate programmes (26%), lack of adaptive equipment (19%) and cost of programmes (14%). most of the literature reports similar barriers, namely the cost of an exercise programme (malone, barfield & brasher 2012; scelza et al. 2005), lack of experience amongst fitness centre staff in working with pwds (scelza et al. 2005), lack of adaptive equipment (crawford & stodolska 2008; rimmer & henley 2013; the life group 2011), lack of training of coaches and community-based instructors (johnson 2009), negative attitudes of healthcare professionals (shakespeare & kleine 2013) and the qualification of individuals who are responsible for supervision (jaarsma et al. 2014). although programme or policy barriers were the least reported barriers (13%), they remain important because pwsci cannot participate safely in pa without suitable programmes, equipment and trained staff. many buildings and pa programmes in south africa remain inaccessible to pwd and thus prohibit individuals from engaging in activities of daily living and being included in society. unfortunately, the onus is on pwd rather than on society to seek alternatives or solutions. many health disparities faced by pwd are not necessarily directly associated with the disability itself; rather, they reflect a lack of good health promotion practices, as well as environmental and social barriers (social model of disability) (rimmer & rowland 2008). within the social model of disability, the following holds true: ‘[w]e were not disabled by our impairments but by the disabling barriers we faced in society’ (oliver 2013:1024). social barriers the social barriers to pa identified in this study included lack of information (50%), lack of friend or family support (20%) and lack of role models (15%). this is consistent with previous research, which documented that participants do not receive adequate information regarding sporting opportunities post injury (malone et al. 2012; stephens, neil & smith 2012). limited social support and family role functioning also contribute to the barriers (magasi, heinemann & whiteneck 2008). in addition, many people do not believe that they may benefit from pa, because their doctors did not encourage them to be active (scelza et al. 2005). thus, health professionals should exploit their trusted positions as sources of information and discuss the importance of pa participation and its effect on overall well-being (putnam et al. 2003) with their patients. negative societal attitudes were mentioned by 10% of the participants in this study and were also identified as one of the barriers in promoting health in pwd (rimmer et al. 2008). the relatively low rate in this study can be ascribed to the fact that most of the participants were already physically active in areas that cater specifically for pwd. therefore, they did not need to interact much with society around them when they were physically active and as a result did not experience negative societal attitudes. facilitators to physical activity although pwsci face many barriers to pa, many facilitators (n = 290) were also identified in the study and are summarised in table 2. table 2: reported facilitators to physical activity. in this study, personal (37%) and social facilitators (29%) were the primary reasons for the participants’ pa participation. these facilitators concern the human aspect, involving the person directly or his or her social environment. the identified personal facilitators are associated with internal motivation, such as a desire to be active or to improve self-esteem. the social facilitators that emerged mainly concerned the people who supported them in being physically active. although all facilitators are relevant, without a personal drive to be physically active or the necessary family support, pwsci might not even leave their homes, much less attend a pa session. personal facilitators personal facilitators were reported by participants (37%) as the main driver for being physically active. this group of factors is important, as it determines the person’s motivation to remain physically active. in this study, the most reported personal facilitator was firstly that people enjoyed exercise and that it made them feel good (35%). secondly, they had a desire to be physically active (33%). some of the participants also declared that they were physically active to improve their self-confidence (26%). these facilitators correspond with those reported in previous research (bailey et al. 2013; stephens et al. 2012). similar facilitators were also identified in the able-bodied population, where the participants agreed that feeling good motivated them to continue to or want to be physically active (louw et al. 2012). similar to an able-bodied population (louw et al. 2012), the participants in this study expressed the desire to improve general health and strength as a facilitator. in sci participants, researchers found that having fun and improving physical fitness and strength were great motivators in well-resourced environments (kehn & kroll 2009; wu & williams 2001), which is consistent with the results of this study. whilst the prevention of secondary health conditions is an important facilitator in well-resourced environments, especially in the sci community (kehn & kroll 2009), it was not mentioned by participants in this study as one of the facilitators. yet, the majority of the participants acknowledged in the questionnaire that pa helps to prevent secondary conditions. previous research also identified that participants felt they had to prove themselves (stephens et al. 2012). this is frequently mentioned in the literature as a reason why pwd participate in competitive sports (huang & brittain 2006; page, o’connor & peterson 2001). however, this did not emerge as a facilitator in this study. it is evident that people engage in pa for various reasons and that for some, early engagement is necessary for a positive self-identity and for others, it only becomes important at a later stage (levins, redenbach & dyck 2014). regardless of the timing, pwsci want to be physically active and should be afforded opportunities to do so. social facilitators most of the participants in this study (45%) highlighted family and friend support as a facilitator. this was also a key facilitator in previous literature from well-resourced environments (keegan et al. 2012; stephens et al. 2012), as it facilitates personal commitment (keegan et al. 2012). in addition, support from peers with disabilities was also identified as a facilitator, which encourages commitment to pa (jaarsma et al. 2014). this also includes having role models amongst physically active people (page et al. 2001; stephens et al. 2012). in this study, these factors were reported by 27% (peers) and 13% (role models) of the participants. as the first point of contact after acquiring an injury, rehabilitation and medical staff are considered as a crucial facilitator, as pwsci highly depend on information they receive from the professionals. surprisingly, this facilitator accounted for merely 7% of the social facilitators identified in the study, indicating that pwsci are not receiving adequate information regarding their health and pa opportunities before they are discharged from hospital. another infrequently reported facilitator of pa behaviour was positive societal attitudes (7%). this low percentage possibly indicates that there may still be a stigma associated with pwd in south africa, which is consistent with the findings from well-resourced environments (rimmer & rowland 2008). environmental facilitators environmental facilitators are important, especially since they are associated with accessibility. for the majority of pwd, including pwsci, accessibility is a major issue because of their decreased or limited mobility. unsurprisingly, therefore, accessible facilities were the most frequently reported facilitator in this study (44%). even though people with health disparities associated with a disability, such as a sci, have a tendency to live hypoactive lifestyles, they have the right to be physically active (riley et al. 2008), and for this they require accessible facilities. many secondary health conditions can be prevented or minimised through pa, whilst lack of access to facilities exacerbates the disability through its effect on a person’s health status. the latter predisposes pwd to remain homebound, which may exacerbate sedentary behaviour and caloric intake (rimmer & rowland 2008). these behaviours can ultimately lead to obesity and additional or other secondary conditions, which further intensifies the barriers they face. safe locations (33%) also emerged as an important environmental facilitator. this is understandable because pwd, including pwsci, are vulnerable and easy targets for crime, especially in south africa. according to the national crime victims’ rights week (ncvrw) resource guide (2015) and the world health organisation (who) department of violence and injury prevention and disability (2015), pwd are far more often victims of crimes than the rest of the population. hence, safe locations of facilities are essential when catering for pwsci. whilst transport was another facilitator reported to increase pa participation, it was less frequently indicated in this study. most pwsci in south africa do not drive themselves, have a vehicle or have access to public transport in comparison to well-resourced environments. programme or policy facilitators most of the facilitators identified in the programme or policy section were related to people being available and competent to assist, such as skilled staff (28%), enough staff (19%) and sufficient number of trained volunteers (23%). having sufficient and skilled staff is important as some pwsci need assistance with wheelchair transfers, stretching and guidance by staff in order to execute exercises correctly. lastly, the availability of more and better-quality programmes that are tailored to individual needs (28%) was also highlighted. although only a few studies reported on programme or policy facilitators, it was found that individually tailored programmes, a facility that supports people with similar conditions and disabilities and an exercise programme that considers individual motivators (the life group 2011) are considered facilitators in well-resourced environments. surprisingly, very few researchers reported on this vital facilitator, yet without trained staff and appropriate programmes, pwsci will not be able to partake in safe and healthy behaviours, which includes pa. nevertheless, this might be a differentiating factor between well-resourced and under-resourced environments because under-resourced environments have fewer opportunities for pwd in comparison to developed countries, where trained staff and appropriate programmes are almost guaranteed. strengths and limitations the results of this study must be interpreted in the context of its limitations. the limitations include the small number of participants that completed the questionnaire. moreover, participants were limited to individuals living within the western cape, one of nine provinces in south africa. additional or other barriers may be experienced by pwsci living in other parts of the country, requiring alternative interventions and different facilitators. another aspect to consider is sampling bias. the majority of the participants were either involved or were previously involved in some form of pa, thus their perspectives towards pa participation may be biased and not representative of the entire population of pwd in the western cape. it is, however, of great concern that the majority of the pwd, including pwsci, do not have any access to facilities and programmes that provide pa opportunities and therefore the barriers (and facilitators) reported could be underestimated in terms of both importance and impact. implications physical activity for pwsci is a multifaceted issue and further research needs to be conducted to understand the predictors of pa participation (tawashy et al. 2009) and continued participation. this study needs to be replicated in a larger and more diverse sample. this includes pwsci from all nine provinces within south africa. subsequent to the proposed expanded study, the design of a national intervention should be tailored to the specific needs of pwsci and implemented within different communities in order to determine what is still required for community-based health and wellness. therefore, future research is also encouraged to better understand the change in barriers that takes place once an intervention has been implemented and to determine whether a community-based pa programme is sustainable over a long period of time (> 12 months). furthermore, future research might be supplemented by qualitative studies that focus on the lived experiences of pwsci regarding the barriers and facilitators in order to add depth to this study. a better understanding is required for the development and implementation of pa programmes promoting health and wellness within pwsci by reducing the identified barriers and enhancing the facilitators. lastly, the study can be replicated in groups of people who have acquired other disabilities. conclusion it is evident that pwsci face various obstacles in being physically active. however, in low-resource environments, these barriers are often multiple and include a combination of personal, environmental, social and programme barriers. when physical inactivity is not addressed within pwsci, health and wellness are not achieved, quality of life is affected and affected individuals are predisposed to many other comorbidities and secondary health conditions. the latter place a strain not only on the individual and family but also on national economies, especially in low-income to middle-income countries. physical activity is a modifiable risk factor with many health benefits which all are entitled to experience and ought to have access to. acknowledgements this article is partially based on the author’s doctoral thesis for the faculty of education at stellenbosch university with supervisors dr s. ferreira and prof. e. terblanche, received december 2016, available here: http://scholar.sun.ac.za/handle/10019.1/100037 competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.f. was the supervisor during c.v.’s phd, contributing to the original research and offering guidance in the write-up of the article. e.t. was copromoter on the original research, providing editing and feedback on current submission. w.d. provided much feedback and guidance on the write-up of the current submission. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data that support the study can be found here: 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references footnotes about the author(s) patrick ojok department of community and disability studies, kyambogo university, kampala, uganda junior b. musenze department of community and disability studies, kyambogo university, kampala, uganda citation ojok, p. & musenze, j.b., 2019, ‘a defence of identity for persons with disability: reflections from religion and philosophy versus ancient african culture’, african journal of disability 8(0), a490. https://doi.org/10.4102/ajod.v8i0.490 review article a defence of identity for persons with disability: reflections from religion and philosophy versus ancient african culture patrick ojok, junior b. musenze received: 14 jan. 2018; accepted: 29 aug. 2018; published: 23 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: religion and philosophy follow the hegelian dialectic, man as thesis, evil as antithesis and ideal man or god the final synthesis, locking out persons with disability stating that they don’t meet the criteria of being human persons. in contrast, persons with disability were accepted in ancient africa and their disorder was not shown as a physical handicap. objectives: the objective of this article was to critically examine how disability is constructed in philosophy and religion in comparison with african culture, in the shaping of disability identity as a form of humanity. method: this article undertook a document review of both grey and peer reviewed literature. the papers reviewed were identified and screened for relevance, then analysed with the aim of comparing the portrayal of disability in philosophy, religion and ancient africa. results: our analysis revealed that african cultures revered the disability identity, as opposed to philosophy and religion that portrayed it as abnormal. a person with disability was accepted in ancient africa and given a visible role in society suggesting their integration in daily life activities while their disability was believed to be a blessing from the gods. conclusion: religion and philosophy have incredibly alienated persons with disabilities with linguistic and derogative identities. whereas african spiritualism inherently glorified and/or approved disability, in today’s africa, persons with disability are increasingly objectified and abused because of ignorance and harsh economic conditions. nevertheless, the contemporary mistreatment of people with disabilities (pwds) does not reflect a true african culture but is a symptom and a consequence of the material and economic injustice that pwds encounter. keywords: disability; identity; philosophy; african; religion. introduction human identity even in contemporary philosophical logic and metaphysics brims with controversy. definitions of identity have caused racism, institutionalisation and denial of rights. most saddening is the linguistic and situational identity atoned to persons with disabilities by two traditional disability models, the ‘social and medical models’, exhibiting great reliance on the utopian image of man that philosophy and religion historically have constructed as a measure for human identity. the medical model views disability as a defect or sickness that must be cured through medical intervention (kaplan 1999). this perspective assumes that the function of intervention or treatment is to fix, cure or ameliorate the disability so that the individual will be better able to function in society (susan 1996). however, such categorisations create social class systems where some humans are seen as less human than others, and as a consequence persons with disability are embroiled in the fracas of identifying with normalcy. the social model creates a social position for an individual that is constructed in response to widely held notions of normalcy, in that ‘disability is the attribution of corporeal difference – not so much a property of bodies, as a product of the cultural rules about what bodies should be or do’ (garland 1997; oliver 1990). byrne (2000) states that persons with disabilities remain philosophically marginalised as such individuals may fail to live up to the strict philosophical standards associated with human nature as rational and able-bodied. disability studies continues the task of defining man’s identity that fits contemporary conceptions of human identity. philosophical discussion whereas philosophy did not initially matter in greece and the roman world, all life experiences of antiquity were guided by myths and legends (kerenyi 1974). these gave tales about gods, their appearance, occupation and man–god intercessors. hamilton (1942) in her book mythology described a scene in which oedipus the king of thebes consults tiresias, the old blind prophet of thebes, to find out who had killed king laius, as his kingdom was facing tragedy as a consequence of the king’s death. furthermore, the god hephaestus, one of the multitude of greek deities, was himself perceived as lame, although he did not stand as a symbol of disability. he was the god of the forge, a skilled artisan who is said to have created some of the wonders of greek mythology such as the shield of achilles (hard 2004). it is tempting to believe that, given their contemplative abilities, the ancient greeks had a similar conception of disability identity based on contemporary terminology; however, it was much different for if they did, there would be so many persons with disability. martha rose (2003) in the staff of oedipus stated that persons with disability in ancient greece were not a clearly defined subcategory of human beings and it would be archaic to investigate the phenomenon of disability in greece from the perspective of a contemporary disability model. it was common to account for a lost body part with an increased ability of the use of another sense or bodily feature. for example, a greek philosopher named dio chrysostom, who was banished from rome by emperor domitian, thought that blindness was not unique to homer, but that all poets should be blind. he said, ‘moreover, all the poets are blind, and they do not believe it is possible for anyone to become a poet otherwise’ (hartsock 2008). indubitably, plato sits at the foundation of philosophical discourse of the west, and contemporary authors still turn to his writings when attempting to support argumentation about ancient greek culture. the republic, one of his dialogues, detailed the nature of traditional scholarship and how it rendered people with disability in ancient greece inconsequential and invisible (rist 1986). it was one of the first philosophical texts to specifically argue that an ideal city governed by reasonableness should actively kill individuals with intellectual and physical disabilities because such individuals embody injustice as the lack of order (jowett 1986). in book iv of the republic, socrates argues that: to produce health is to establish the elements in a body in the natural relation of dominating and being dominated by one another, while to cause disease is to bring it about that one rules or is ruled by the other contrary to nature. (kromm 2002:3) health is thus an objective good associated with order, beauty and proper functionality as a type of harmony, and disease and dysfunction are associated directly with disorder, ugliness, the bad condition of the soul and, most importantly for the republic, injustice as a type of disharmony (broad 1953). socrates’ argumentation pioneered a philosophical conception of disability as a type of deficiency while setting off the neoplatonic movement that preceded plato’s academy. a neoplatonist, john scotus erigena, theorised that the universal (the ideal) is the essence of reality and that each particular object is contained within the universal and is a product of the universal (carabine 2000). according to macfarlane and roland (2004), scotus meant that the more universal an object is, the more real it is; the more of humanity a particular person possesses, the more real ‘he or she’ is and problems of material existence such as disease and disability are a consequence of deprivation of a higher good – the complete reality of perfection. the charity model of disability is traceable to medieval times. the medieval period was a moment for development of beliefs and most explicitly was the development of christianity. the church particularly refused to ordain any person with disability into ministry. the canon law and theological books accorded persons with disability the title sinners. however, with the presence of monasteries and churches in the medieval period, charity was always offered to these groups of people, and in particular saint louis granted blind people a rare legal right to beg on the streets of paris (wheatley 2002). in being and essence, st. thomas aquinas, a medieval philosopher using aristotelian metaphysics, devoted much thought to the question, ‘what does it mean to be?’ and using the process called hylomorphism (the doctrine that physical objects result from the combination of matter and form), he specified that for humans, matter is substance and is corporeal, extended and has a desire for form, but the moment is deprived of form; it causes instability (gilson 1955). matter first receives universal form, that is, substance and substantial form individuates matter. it receives further perfections from other forms, so that there is a plurality of forms in any given body that make up one universal form, so that if any of the plural form is devoid, then matter defaults in that universal form and leads to disability (o’daly 1987). in other words, when one lacks a leg, he has deprived his substance of the form of the leg and such a person is a pseudo human. rené descartes, a modern philosopher, is well known for having ascertained the soul’s existence and doubted bodily knowledge by the statement cogito, ergo sum, that is, ‘i think, therefore i am’. he assumed that the soul was in the body akin to a captain piloting a ship, giving the soul the primacy of existence with a mechanical body whose essence was to obey the soul while performing the activities of the soul when in its ‘normal state’. while reflecting on the relationship between the body and soul, sen (1992) noted that: the mathematical precision that descartes’ ‘soul’ would possess would be faulty if a disabled body transmitted empirical knowledge to the soul, since the soul would not have the idea of a normal human body. (pp. 14–17) in relation to the darwinian theory of evolution, the story of survival of the fittest indicates that persons with disabilities were an impure race who by the act of natural selection was not suitable for existence and competition with persons with no disability. social darwinism portrayed evolution as a struggle for existence in which superior races survived and inferior ones perished, which among others included people with disability and non-european races, a fact that the nazi germany used to exterminate many persons with disabilities as well as jews, as they were considered non-human (galton 1998). darwinism and the eugenics movement (paul 2008) provided: a simple solution to the complex issues of physical disorders, mental illness, developmental disabilities and changing social conditions, by eliminating what the movement supporters considered to be hereditary flaws through selective reproduction at many camps in germany, where thousands of disabled people and other ‘undesirables’ or ‘useless eaters’ were exterminated during the nazi regime. (pp. 57–80) in conclusion, philosophy discourse attempts to use rational and substance principles to derive an intelligible basis for human identity that deny those individuals (e.g. persons with disability) who lie outside of, and beyond, reason in its strict sense. symmetrical conceptions of disability identity cannot be fully deduced from philosophical principles alone without incompleteness, but only empirical to rational rather than a priori rational considerations can adequately address the individuality and contingency of a concrete disability identity. religious discussion african societies have been largely inhabited in the realm of the judeo-christian religions (i.e. islam, christianity and judaism) and yet we cannot forego the fact that religious beliefs greatly influence perceptions of persons with disabilities, of themselves, others and the world (ahmad 2015). religion has its etymology from the latin word religare, which means ‘to tie, to bind’, and spirituality is a relationship between an individual and what excites him or her with which she or he has an emotional connection (donald 2006). we would say that spirituality and religion are not synonymous with each other: although spirituality is necessary for religion, religion is not necessary for spirituality. religion has huge psychological acceptance, given its use of spirituality and the fear that comes with its negation, and it is very clear that humans are afraid of what they cannot see coming. just like the philosophers, religions figuratively use disability to foster their views. for example (ahmad 2015:4), the qur’an states: have they, then, never journeyed about the earth, letting their hearts gain wisdom, and causing their ears to hear? yet, verily, it is not their eyes that have become blind – but blind have become the hearts that are in their breasts! (22:46). the word ‘blind’ is used here to refer to the loss of spiritual insight and not the loss of vision or eyesight in the physiological sense. such verses regarding the blind, the deaf and the mute leave us with the conclusion that the words in the qur’an are intended to signify one who is spiritually or morally bereft and not one who is physically disabled. in the same manner, the bible frequently uses disabling language or imagery while discussing topics unrelated to persons with disability. for example, in isiah 56:10, the prophet declares, ‘israel’s lookouts are blind, all of them do not know; all of them are mute dogs that are not able to bark; dreaming, lying down, loving to be drowsy’ (olyan 2008). as olyan points out, this verse does not discuss the persons with disability themselves; it uses the words ‘blind’ and ‘mute’ as metaphors to criticise the ineffective efforts of israel’s leadership. similarly, several other biblical prophesies or curses use disability imagery to describe the moral or ethical conditions of presumably an audience of persons without disability (cf. dt 28:28–29;1 is 29:9; 59:102). such passages may tell us what a particular prophet thought about how the israelites conducted themselves. they tell us very little, however, about the actual living conditions or everyday experiences of people with disability in ancient israel. instead, these passages frequently use language and imagery of disability to describe the experiences and struggles of, presumably, the persons without disability (dorman 2007). judeo-christianity chooses a certain vulnerable and presumed voiceless part of society (e.g. persons with disability) that then becomes a scapegoat for all tragedy and mischief. they become the basis of explanation of sin, and all atonements that project a lack of faith in those religions. the identity of persons with disability is henceforth created after such undesirable conditions are outlined. through faith and prayer, there are allegations of healings where it is said that ‘the blind see and the deaf hear’; hence persons with disability are presumed to go to church only for healing (boaz 2015). there is however scanty scientific literature on how these people have their bodies restored, if at all; it is not theatrical play and whereas these healings do happen occasionally, a person who does not get healed is usually said to be a seasoned sinner. in fact, boaz challenges the dominant belief that persons with disabilities need a healing miracle and posits that they go to church to primarily seek counsel, comfort and company. in conclusion, the implication of religion and philosophy in the use of stigmatising vocabulary, figuratively or imagined, whether used to refer directly to members of stigmatised groups or derivatively to things associated with such groups, exemplifies discrimination and social stigma not so much in how the group in question is being distinguished but in how language and other associations are being used in reference to their identity (routledge 1998). ancient african discussion african societies are deeply rooted in spirituality as opposed to religion, but western-educated african scholars tend to confuse religion with spiritualism, thereby misrepresenting traditional africans as religious. mbiti is credited with some of east africa’s great literary works in the colonial and postcolonial periods, and in one of his major works, introduction to african religion, he claimed that ‘africans are notoriously religious people’ (mbiti 1991), meaning that africans, like other religious sects, have uniquely scripted forms of worship, but this is not the case. africans have spiritual systems that coexist within their traditional cultures, which are not religions but emotive connections (kasomo 2010). ancient african spiritual systems that existed were based on the reverence of nature and environment. these systems in antiquity revered the object of humans, equating humans with the status of a deity. for example, most archaeological artefacts in egypt and sudan on temple walls depicted humans as divine and their bodies as holy, including the body that was said to be disabled (kozma 2006). western anthropologists did not understand african spiritual hermeneutics and equated it to evil while labelling it as animism because they came from backgrounds of scripted religions, which was not the case with africa. the magnificent past of egypt, recorded with iconic art and preserved on many temple walls, tombs and artefacts, witnesses to ancient egypt as the convergence of the multicultural systems of africa (trigger 1993). many artistic impressions, generally realistic, opted to explain the real situation of africans. the triangular shape of the tombs, most being pyramids, were all over africa. it is most likely that the present burial of royals, nobles and distinguished personalities in pyramid-like structures even currently in uganda is an affirmation of the african experience in a smaller egypt (lucas & haris 1999). according to smith (1949), ancient egyptian art in general adopted certain rules and principles, among which was the representation of the kings and tomb owners in an idealistic body in certain postures and situations. this was not the case when dealing with minor figures. minor figures were represented in various postures, performing different jobs. this practice was probably responsible for depicting some of these figures with actual disabilities and deformities in ways that expressed cultural and social acceptance of people with disability in general. african spiritualism inherently glorified and/or approved disability (lawal 2005). in ancient kemit, physical disabilities or body deformities were considered as divine spiritual attributes granted to humans by the gods. this was expressed in representing certain gods with misshapen bodies or as dwarfs, like the gods bes, hapi, forms of ptah and ptah-sokar-osiris (ebeid 1999). ancient egypt accommodated disability and these groups of people always made up households of the kings and high officials. some of those persons with disability attained high positions in the ancient egyptian courts, for example the dwarfs seneb and khnumhotep, as well as roma, the doorkeeper who had a shortened leg (cody 2004). in ancient africa, the artistic sources provide a rich legacy and documentation of individuals with physical disabilites positions and engagement in the context of daily life activities in ancient egypt. all classes of people with physical disability were likely accepted in ancient egypt and were given a visible role in society (weeks 1970). moreover their disorder was not shown as a physical handicap but a blessing from the gods. several high-ranking dwarfs, especially from the old kingdom, achieved important status and had lavish burial places close to the royal cemetery. their costly tombs and statutes carved with hieroglyphs indicate their high-ranking position (smith 1949). the acceptance of disability is reflected in myths from other parts of africa as well. the yorùbá population of west and central africa narrate that obatala [god the creator], tired of just his cat as a companion, decided to create humans to share the earth with him. working tirelessly, he moulded figures of men and women shaped like himself. eventually, he grew exhausted and drank some palm wine to refresh himself, which got him drunk, and he was unable to model the clay properly, resulting in the creation of persons with disability (e.g. dwarfs and albinos) (ford 2000). waking up from his drunk state, he saw the malformed beings. filled with compassion and remorse, he swore never again to drink palm wine and would be the protector of those who have been created with deformities and imperfections. (p. 16) according to wole soyinka, a nobel laureate and a yorùbá, this story brings the god firmly within the human attribute of fallibility: … since human fallibility is known to entail certain disharmonious consequences for society, it also requires a search for remedial activities, and it is this cycle which ensures the constant regenerative process of the universe (ford 2000, p. 16). by bringing the gods within this cycle, a continuity of cosmic regulation is guaranteed in africa (linton 1998). to support the argument that (ancient) african beliefs about disability are not always negative (e.g. the representation of certain kemit gods as disabled), the yorùbá folklore similarly identifies a limping trickster god (èshù), whose impairment gives him access to multiple realities of both the natural world and that of the gods. the yorùbá èshù therefore represents a character with disability or god who provides superior insights into the phenomenal or supernatural world (quayson 2012). this example of the powers of èshù fits quayson’s categorisation of the representation of disability as ritual insight. in contemporary africa, persons with disability are being hunted for magical potions, discriminated against and their accessibility in society made difficult (tanner 2010). nonetheless this has not stopped the vadoma people of zimbabwe – also known as the ‘ostrich people’, who have a rare condition of their feet – from perpetuating a positive spiritual symbolism related to persons with disabilities. according to farrell (1984), these people have a condition known as ‘ectrodactyly’ in which the middle three toes are absent and the two outer ones are turned in. this condition makes it difficult for them to run or even wear conventional shoes. however, the condition is regarded with pride among the vadoma people, and they forbid members to marry outside the group. the story of the vadoma people is a vivid example that affirms ancient african sentiments about disability amidst the change that we now see. in contrast, in today’s africa, persons with disability are increasingly becoming objects of pity and abuse because of ignorance and harsh economic conditions. evidence of denying the identity of persons with disability abounds in churches where pastors exercise miraculous healing (boaz 2015). as well, certain persons with disabilities, particularly albinos, are being killed because of the false belief that burying their heads in the foundation of a building makes the house owner rich. in uganda, a local newspaper carried a story of the gruesome murder of two children with disabilities by their own mothers. the mothers allegedly cited strong negative stigma and being divorced for giving birth to ‘abnormal children’ as the (inexcusable) reasons for killing their own babies (gerald & luk 2018). conclusion we have attempted to show that ancient african cultures revered the disability identity, unlike philosophy and western religion that portray it as cursed or abnormal. philosophy and religion have created enough damage for persons with disability by creating imagery and figurative compositions to alienate them from humanity. artistic sources provide a rich legacy and documentation of the positions of persons with disability in daily life in ancient africa and in particular egypt. a person with disability was accepted in ancient africa and given a visible role in the society, witnessed in present time among the vadoma people. furthermore, their daily activities suggested integration in daily life and their disorder was not shown as a physical handicap but a blessing from the gods; no one worried over a disability as the identity of all was of humanity. and yet in the contemporary situation, religion and philosophy have done much to alienate persons with disabilities with linguistic and situational derogative identities. the modern disavowal of persons with disability does not reflect the true african culture but is symptomatic and a consequence of the material hardships and economic injustices that persons with disability face. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions p.o. is the corresponding author; he provided overall technical guidance throughout the writing, submission and review processes. p.o. was responsible for critical reading of the paper for coherence, correctness, disability studies fit of the philosophy, religious and ancient african discussions. he was also responsible for coordinating responses to reviewers and proofreading the paper prior to submission. j.b.m. was responsible for conducting the literature search, making summaries of literature, drafting the article, incorporating changes after reviews and discussion, formatting and referencing. references ahmad, h., 2015, inclusion, disability and culture, sense publishers, rotterdam. 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economics and hiv and aids research division, university of kwazulu-natal, south africa correspondence to: verusia chetty email: chettyve@ukzn.ac.za postal address: private bag x54001, discipline of physiotherapy, university of kwazulu-natal, durban 4000, south africa dates: received: 06 june 2014 accepted: 16 feb. 2015 published: 08 june 2015 how to cite this article: chetty, v. & hanass-hancock, j., 2015, ‘the need for a rehabilitation model to address the disparities of public healthcare for people living with hiv in south africa’, african journal of disability 4(1), art. #137, 6 pages. http://dx.doi.org/10.4102/ajod.v4i1.137 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. the need for a rehabilitation model to address the disparities of public healthcare for people living with hiv in south africa in this opinion papers... open access • abstract • introduction    • ethical clearance    • emerging evidence of rehabilitation in the context of hiv    • elements in developing a model of care in the context of rehabilitation    • steps in the development of a model of care • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ rehabilitation in the context of hiv management in africa is still a neglected field which holds great promise for the improvement of the quality of life as well as integration of people living with hiv back into their communities and homes. however, rehabilitation has not been incorporated into hiv care despite the fact that a large number of people living with hiv experience disability. the dearth of literature and lack of models of care to roll out rehabilitation for people living with hiv in africa are astounding. well-resourced countries have emerging approaches on the management of disability in the context of hiv. however, epidemic countries are still lacking such an approach neglecting the devastating effects of disability on individual livelihoods and antiretroviral treatment adherence. thus, rehabilitation needs to be integrated into the response to hiv. this article advocates for the development and implementation of a model of care to guide rehabilitation of people living with hiv in south africa. introduction top ↑ south africa is the epicentre of the global hiv epidemic with more than 6.4 million people living with hiv in this part of the world (shisana et al. 2014). although the country shows initial successes in reduction of hiv incidence, the overall number of people living with hiv will still rise in years to come. for instance, the 2012 human sciences research council (hsrc) household survey reveals that hiv prevalence increased from 10.6% in 2008 to 12.3% in 2012 with 2 million people on antiretroviral treatment (art) (shisana et al. 2014). with the up scaling of the arts people are now surviving, however they experience new challenges related to a life with chronic illness which may include disablement related to hiv, its co-morbidities and their treatments (hanass-hancock, regondi & nixon 2013; meintjies et al. 2012; nixon et al. 2011a). a recent scoping review on hiv-related disability in hyper-endemic countries revealed that people living with hiv experience a range of impairments affecting the body function (mental, sensory, cardiovascular, respiratory, digestive, metabolic, reproductive and muscle functions), activity and participation levels leading to disability (hanass-hancock et al. 2013). these disabilities impact quality of life, livelihoods and adherences to arts and provide an increased burden to health care (cobbing et al. 2013; hanass-hancock et al. 2013). consequently, adherence to arts is becoming the focus of attention in health care research as great investment is put into south africa to roll-out arts. mental health impairments and its disabling effects on people living with hiv directly impact adherence and pose a threat to health care (petersen et al. 2014). furthermore, unemployment of people living with hiv affects adherence to arts as people cannot afford treatment and being unemployed may also result in depression which has a ripple effect on adherence to treatment regimen (international labor organisation report 2013). emerging literature argues that hiv, like other chronic diseases, needs to be accompanied by a continuum of care including rehabilitation and mental health services (cobbing et al. 2013; hanass-hancock et al. 2013; nixon et al. 2011b). however, in africa there is a gap of conceptualising hiv as a chronic disease that involves disability and the development and implementation of rehabilitation approaches that are feasible and prevent or reduce the disabling effects of living with hiv. rehabilitation professionals in africa (chetty & maharaj 2013; cobbing et al. 2013; hanass-hancock et al. 2012; hughes et al. 2004; jelsma et al. 2002) argue that there is a need for rehabilitation within health care systems to offer a continuum of coordinated, multi-levelled, multi-discipline and evidence-based service to address the dynamic nature of the disease. however, there has been no consensus related to the extent to which rehabilitation approaches or strategies have been effectively integrated into hiv management in the general context of health nor has there been discussion related to what strategies or approaches to rehabilitation would be more feasible in a holistic model of hiv care in a country like south africa (cobbing, hanass-hancock & deane 2014). in south africa, rehabilitation of people living with hiv differs from the public to the private sector. there is a disparity with regard to resources available to individuals accessing the public health sector compared to individuals who can afford private care. public health care lacks the infrastructure and funding to manage the health care demands of the large number of people accessing its services and this is confounded by poor governance and shortages of health care workers (world health organisation bulletin 2015). for the purposes of this article, emphasis is maintained on rehabilitation offered within the public health sector. the article provides an overview of the current models of rehabilitative care in different settings and discusses how these can inform the inclusion of rehabilitation into a model of care for people living with hiv within a public health care south african framework. ethical clearance full ethical clearance to conduct this phd research in health science's under the supervision of dr jill hanass hancock. (ethical clearance no. hss/1319/012d). the protocol submitted is a phd in health sciences (university of kwazulu-natal). emerging evidence of rehabilitation in the context of hiv the world health organization's international classification of functioning, disability and health (icf) has changed the disability paradigm from unilateral into multidimensional, in that disability is not only seen to affect an individual's body but their social being as well (world health organisation 2002). the interactions between health conditions, intrinsic contextual features of the individual and extrinsic contextual features of the social and physical environment make this framework suitable to understand the novel challenges posing resource limited settings such as south africa. the icf framework has lent itself to studies in a south african context (hanass-hancock et al. 2013), which allows for better understanding of hiv, disability and rehabilitation (myezwa et al. 2009, van as et al. 2009). worthington et al. (2005) used qualitative means to develop an insightful rehabilitation framework to improve the service for people living with hiv in canada. this hiv conceptual rehabilitation framework was developed in consultation with various stakeholders including people living with hiv and rehabilitation professionals. it offered a broader understanding of rehabilitation including psychological, social and vocational dimensions but remained client-focused and goal oriented. the rehabilitation framework took route in the icf which propagates rehabilitation as a ‘dynamic process, including all prevention and/or treatment activities and/or services that address body impairments, activity limitations and participation restrictions for an individual’ (worthington et al. 2005). worthington et al. (2009) explored and developed the rehabilitation needs of people with hiv living in canada through a national survey of health professionals as providing tools and support to do what is meaningful to them. these tools extend beyond health care and include vocational and fiscal support in addressing the rehabilitation needs of people living with hiv (worthington et al. 2009). as an imperative in the rehabilitation of people living with hiv, the authors of this article identified three concepts to be included in the rehabilitation framework for a south african setting bearing in mind the icf and worthington et al.’s (2005, 2009) contribution into understanding disability and rehabilitation. firstly, the setting in which rehabilitation occurs needs to address varying degree of demands on resources and rehabilitation services that is available and this must be tailored into a rehabilitation framework (new south wales department of health 2010). secondly, people living with hiv require different levels of care and rehabilitation at different points in their life. disability may also be experienced episodically and this will impact the service delivery as people living with hiv may experience shifting levels of disablement and require more or less rehabilitation intervention depending on their needs at a point in time of care (o’ brien et al. 2011). thirdly, the flow of people living with hiv may include the movement from the acute care setting to the sub-acute care setting and from the sub-acute care setting back into the community and home (new south wales department of health 2010) and a rehabilitation framework needs to ensure that these links work efficiently. community-based rehabilitation which utilises local resources in areas with limited infrastructure (iemmi et al., 2014) and home-based care taking rehabilitation to people living with hiv are two working rehabilitation approaches in south africa. these approaches are well suited contextually taking into consideration lack of resources but still there lacks a model of care that brings together these existing practices and approaches. canada is amongst the leading countries addressing rehabilitation of people living with hiv and for over 15 years has mobilised a working group of stakeholders forming the canadian working group on hiv and rehabilitation (cwghr 2013). cwghr has established pristine educational material informing the rehabilitation of people living with hiv in canada some of which is being adapted with contextual variance in sub-saharan africa to inform and aid in rehabilitation practice (nixon et al. 2014). the module proposes to bridge the existing knowledge gap with regard to rehabilitation at a local level in lowto middle-income contexts. adapting and developing such guidelines will aim to offer a feasible approach of providing holistic and multidisciplinary service for people living with hiv in these settings. for instance, a discussion around task-shifting and usage of lay personal to deliver rehabilitation may not be necessary in the canadian context but might be one of the few feasible approaches to include in rehabilitation in the context of resource poor settings such as south africa. elements in developing a model of care in the context of rehabilitation a model of care ‘is a multifaceted concept, broadly defining the way in which health care is delivered including the values and principles; the roles and structures; and the care management and referral processes. where possible the elements should be based on best practice evidence and defined standards and provide structure for the delivery of health services and a framework for subsequent evaluation of care’ (davidson et al. 2006; queensland 2000). many shortfalls in the delivery of care in varied health settings such as poor infrastructure lend to the development of novel models by health care professionals as they respond to these demands on health care services (davidson et al. 2006). these shortfalls often promote a convergence between research and the health care setting (davidson et al. 2006). in well-resourced countries such as australia this has led to the development and implementation of models of care in rehabilitation of patients with various conditions. these include cardiac, orthopaedic, neurological fields as well as high impact conditions like amputees (new south wales department of health 2010; south australia department of health 2011a; south australia department of health 2011b; western australia department of health 2007; western australia department of health 2008). during evaluation of the development of these models a number of strategies have been identified as crucial for a meaningful process and development of a working model in rehabilitation. the strategies involved in the development of the australian rehabilitation models of care have been summarised and presented in a synthesis of australian models of care in rehabilitation (figure 1) (new south wales department of health 2010; south australia department of health 2011a; south australia department of health 2011b; western australia department of health 2007; western australia department of health 2008). the models synthesis is explicit in addressing the rehabilitation needs identified to be lacking in a south african context. the trajectory of care for people living with hiv is linked with the care setting and underpinned by principles and critical enablers. the framework emphasises that the process of model development needs to include objectives (new south wales department of health 2010). for instance the synthesised framework identifies the improvement of access to care, reducing inequality in health status, providing safe, high-quality health care; promoting a patient centred continuum of care; ensuring value for money and optimising health services as being part of the objectives driving the development of a model of care (new south wales department of health 2010; south australia department of health 2011a; south australia department of health 2011b; western australia department of health 2007; western australia department of health 2008). at the same time this process needs to consider a number of principles such as leadership and collaboration of the multidisciplinary team, the specific setting is essential in providing appropriate timeous intervention. furthermore, factors that will enable the implementation of a revised or new model such as data systems and education and training must be established during conceptualisation. figure 1: a synthesis of australian models of care in rehabilitation. reflections on working models enable researchers and health practitioners to identify gaps and causes of challenges within the system. for instance, the south australia department of health (2011a) identified the need to develop a model of care for cardiac rehabilitation. it was evident that patients significantly benefited from rehabilitation programmes but many barriers existed that resulted in low participation such as local resource limitations (south australia department of health 2011a), such resource limitations also impose themselves in our context, and these include fiscal challenges (cobbing et al. 2014), which need to be factored into the development of a south african model. likewise, a model of care for children with acquired brain injuries in paris was implemented and although the evaluation rated the system to be organised, it lost a significant amount of children to follow up. it was discovered that the referral from the acute care hospital to long-term facilities such as outreach programmes and vocational guidance clinics was not always operational. in response informative documents were developed in order to strengthen adequate referral and follow-up (chevignard et al. 2009). in south africa, there is no model guiding rehabilitation of people living with hiv. the development of such a model could use elements of the australian's guiding framework (see figure 1) as a guiding tool. drawing on the guiding framework will assist in identifying objectives, principles and the support needed in the south african context. steps in the development of a model of care in order to guide the process of model development one has to identify logical steps and processes (davidson et al. 2006). for instance, the department of health, western australia describes the process of developing a model of care in five major phases: phase 1: understanding the health policy context, phase 2: definition and understanding the current state of play, phase 3: translating evidence-based research and expert opinion into best practice, phase 4: consulting broadly with stakeholders and incorporating feedback, as appropriate to produce a finalised model of care, phase 5: endorsement of the model of care by advisory group and health networks (western australia department of health 2007). these steps can also be used for the development of a rehabilitation model needed for people living with hiv in south africa as it is explicit and provides comprehensive guidelines throughout the process of development. propitiously, the current state of rehabilitation in public health care in south africa fits into the framework and provides steps that can be adopted as the way forward in our paradigm. initial steps towards the development of such a model have commenced. for example, phase 1: understanding the health policy context in south africa is explored in preliminary work on hiv and disability. evidence has been provided by hanass-hancock, strode and grant (2011) and hanass-hancock and nixon (2010) revealing that current health policy does not include the disabling effects of hiv and its rehabilitation redress in hiv care in south africa as yet. however, south africa has developed a new national strategic plan (nsp) for sexually transmitted infections (stis), hiv and tb for 2012–2016. the nsp‘s goals and strategic objectives are guided by evidence from various reports (south africa 2012; south african national aids council disability sector 2009; south african national aids council 2011) and now includes the disability sector. the disability sector has responded to the challenge in developing disability specific hiv and aids programmes and established the need for mobilisation of resources for disability and prioritising persons with disabilities in the aids response (south african national aids council disability sector 2009). the new nsp includes persons with disabilities as a vulnerable group and lists a number of services in relation to access, prevention, treatment care and support. this new plan is also dedicated to the management of hiv and aids and mentions the prevention of disability in the title of objective 3. although, initial efforts are underway to integrate issues related to disability and hiv more needs to be carried out to concretely integrate a rehabilitation model to guide delivery of care. the plan does not include rehabilitation strategies such as physical, vocational and social approaches. measurable outcomes need to be agreed upon and evaluated in order to assess the impact of these efforts on the broader goals of the nsp. in order to achieve integration rehabilitation has to be realised as a crucial component of hiv management in reducing disability (south african national aids council 2011). secondly, phase 2: definition and understanding the current state of play: nixon (2011a) clearly describe the current state of rehabilitation in the context of hiv in south africa highlighting the increasing disablement experienced by people living with hiv and association to the roll-out of arts in the mid-2000s. cobbing et al. (2013), hanass-hancock et al. (2013) and van as et al. (2009) concede and explain that as the number of people living with hiv increases in south africa, the need to address their disabilities becomes an imperative on health care and health care professionals. however, strategies on streamlining intervention into the health structures remain a challenge. thirdly, phase 3: translating evidence-based research and expert opinion into best practice: although south africa is effectual in research pertaining to hiv and disability (cobbing et al. 2013), much can be drawn from global contexts on the best practices and rehabilitation guidelines, such as the cwhgr (2013) e-module. this guide could be tailored to a south african context factoring in task shifting and a greater focus on community-based rehabilitation and home-based care. consequently, some pilot projects (cobbing et al. 2014; petersen et al. 2014) indicate that rehabilitation (including mental health interventions) in the context of hiv in south africa might need to go beyond standard of rehabilitation care which is often clinic based and limited because of a lack of qualified staff. community-based rehabilitation and task shifting possibly provide a more feasible approach but this has not been discussed in the context of hiv and rehabilitation. hence a broader consultative process working towards the development of feasible interventions is currently needed. such a process needs to be discussed as possible models of care and feasible approaches for the south african context with experts and key stakeholders in the field. these experts and stakeholders should include the multidisciplinary health care team (doctors, physiotherapists, occupational therapists, dieticians, speech and language therapists, social workers, midlevel workers, community health care workers), department of health representative(s), site affiliated non-governmental organisation representative(s) and service users (people living with hiv receiving rehabilitation). consequently phases 4 and 5: consulting broadly with stakeholders and incorporating feedback, as appropriate to produce a finalised model of care and endorsement of the model of care by advisory group and health networks are not yet initiated in south africa. however, with expert opinions and reflection we will be able to develop evidence-based and feasible interventions. only after this process, we will be able to agree on a model of care that is suitable to south africa and that will be able to feed into the broader health agenda in south africa. such a model should involve communication both formal and informal in repetitive meetings to share information and solicit feedback regarding the sustainability and the running of the model. furthermore, evaluation is often achieved by involving key stakeholders to give feedback on the progress and impact of the model (cormack et al. 2007). this alludes to the pinnacle of this article, the way forward. the researchers highlight the necessity for a model of care in the rehabilitation in the context of hiv and that the process of developing this model needs to include consultative meetings with people living with hiv and service providers as well as consensus in feedback from experts in the field (davidson et al. 2006). conclusion top ↑ the need to develop a model to guide rehabilitation of people living with hiv in south africa is essential as we address the cumulative disabling effects of the virus and its treatment. the process of development of the model needs to adhere to key processes that have already been tested in resource-rich contexts and now need to be further tailored to meet the needs of a resource poor context. a framework as in figure 1 provides clarity on the elements that need to be considered in the development of such a model. furthermore, the evidence shows that working models need phased development (davidson et al. 2006; western australia department of health 2007). the example taken from the western australian department of health (2007) process of model development articulates seamlessly the phases that have consequently and ideally begun in south africa through fundamental research (cobbing et al. 2013). the upcoming processes will involve engagement with rehabilitation experts in the field of hiv and key stakeholders in order to obtain a guiding model of care in tackling the disabling effects of hiv on people living with the virus in south africa. acknowledgements top ↑ thanks to pragashnie naidoo and the late professor rati mpofu for assisting with conceptualising the article. competing interests this study is supported by the medical research council of south africa in terms of the national health scholars programme from funds provided for this purpose by the national department of health. authors’ contributions v.c. (university of kwazulu-natal) was the lead author and the article forms part of her ph.d. research. j.h-h. 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http://dx.doi.org/10.1080/09540120902883101 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) jabulani mpofu department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa maximus m. sefotho department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa citation mpofu, j. & sefotho, m.m., 2025, ‘autism paradigms in a developing country setting: results and implications of a zimbabwean study’, african journal of disability 14(0), a1638. https://doi.org/10.4102/ajod.v14i0.1638 original research autism paradigms in a developing country setting: results and implications of a zimbabwean study jabulani mpofu, maximus m. sefotho received: 09 dec. 2024; accepted: 11 may 2025; published: 18 july 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: autism spectrum disorders (asd) are an evolving concept in the neurodiversity community. there is a continuum of views ranging from biological to social models, of which the medical model views asd as pathological rather than atypical. how people live with their diversity attributes may depend on how they understand their own diversity attribute. objectives: this study explored self-perceptions of young people with mild-to-moderate asd within their cultural context. method: participants included an equal number of males and females with mild-to-moderate asd (five each). they participated in two focus group discussions on self-perceptions of life situations in young people with asd and whether they are considered as neurodiversity or pathology paradigms. data analysis was done using the thematic content analysis approach. results: participants viewed asd as: (1) a human neurological variation, (2) were not disordered, (3) had sense of friendship and belonging, and (4) had natural and normal social emotional development. conclusion: young people with asd perceive asd from a neurodiversity approach. a neurodiversity approach to asd is primarily a social justice movement aiming to end what proponents see as the default pathologisation of neurodivergence and promoting the acceptance and accommodation of human neurodiversity. contribution: this study enhances understanding of self-perceptions among young people with asd in zimbabwe, revealing challenges and strengths unique to their experiences. it may inform educators and policymakers, promoting inclusive practices and tailored interventions, ultimately fostering empowerment, acceptance, and improved quality of life for young people within this community. keywords: autism spectrum disorders; paradigms; diversity; human variation; neurodiversity; pathology; young people; social justice. introduction people’s perceptions of diversity attributes may depend on various frames of reference. this is true for people with neurodevelopmental disabilities, such as autism spectrum disorders (asd). traditionally, studies on abnormal development have been carried out inside the confines of a medical model that sees disability as a condition that can, and more importantly, ought to be treated so that the person can get better and resume a ‘normal life’ (who 2016). put differently, the medical paradigm attends to an individual with a neurodevelopmental disorder as someone who has a disease (e.g. measles). the medical model sees people with disabilities like asd as helpless victims and dependents who need expert assistance and monitoring. due to this, people with asd have attempted to ‘camouflage’ their condition by making themselves seem more neurotypical (mandy 2019). this has led to feelings of burnout, weariness, anxiety, sadness, stress, decreased well-being and suicidality (cage & troxell-whitman 2019; livingston, shah & happé 2019). the medical model perspective of disability seems to raise important concerns about its primary objectives, and this has led to the development of more communally accepted views of disabilities from inclusion movement groups. inclusion movement groups are groups that aim to secure equity and rights for people with disabilities. the medical model of disability was questioned by inclusion movements, who suggested replacing it with a neurodiversity approach to see asd from a neurodiversity perspective as an alternative to the medical model. the neurodiversity approach to asd is more related to an ‘ecological society’ where minority minds are valued according to their own niche (cage & troxell-whitman 2019). the neurodiversity perspective model integrates elements of the social and medical models that are beneficial and blends diagnostic data with psychosocial elements of life, such as resilience. rather than discounting the medical or social perspectives of disability, the neurodiversity perspective combines them with modern ideas of disability, health and function and is consistent with inclusive community practices (mpofu 2024). the medical model is nevertheless essential to expanding knowledge of asd, notwithstanding these critiques. new diagnostic instruments and biomarkers are being investigated as part of ongoing research in an effort to identify asd more precisely (cage & troxell-whitman 2019). studies on single nucleotide polymorphisms and copy number variations are among other genetic advancements that are helping to clarify asd’s hereditary components and providing guidance for possible future treatments (livingston et al. 2019). moreover, a thorough understanding of broad-spectrum illnesses associated with asd and related disorders increasingly depends on interdisciplinary approaches that integrate knowledge from genetics, neurology, psychology and social sciences. according to the american psychiatric association (apa 2013), asd are chronic neurodevelopmental disorders marked by communication and social interaction deficits and limited behaviours, interests and activities beginning within the first 3 years of life. autism spectrum disorders are typically diagnosed in childhood, with many noticeable symptoms emerging between the ages of 2 years and 3 years (kenny et al. 2016). the social model of disability has completely changed how society views and understands disability. the social model stresses how societal constraints contribute to disablement, unlike the medical model that considers conditions like asd to be a personal tragedy or individual handicap (dunn & andrews 2015) it holds that barriers related to social, environmental and attitude are what cause impairment rather than being a feature of the person alone (happé & frith 2020). to accommodate a range of talents and promote inclusion, the emphasis should move from repairing the individual to changing social institutions (silberman & neuro 2015). the social model requires a distinction between disability and impairment. the social model advances that disability arises from the obstacles faced by individuals in societies, impairment refers to any physical, sensory, intellectual or psychological differences that an individual may have (silberman & neuro 2015) and emphasises that impediments to communication, mobility and attitude all contribute to the construction of disability within society (happé & frith 2020). the social model of disability emphasises that rather than being a product of personal failings, asd results from society’s inability to accept variety (happé & frith 2020). this perspective shifts the focus from ‘fixing’ or ‘curing’ people with asd to society’s need to provide accessible settings and opportunities. a culture of acceptance and respect is fostered by encouraging people to see those with asd as an identity that is as legitimate as any other identity (happé & frith 2020). through acknowledging and appreciating the abilities and qualities of people with asd, society may progress toward a future that is fairer and more inclusive, empowering young people to develop a positive self-perception. autism spectrum disorder paradigms in african contexts the asd paradigm provides a cogent ‘story’ of a meaningful, functional, yet culturally subjective reality (ugwu, ekere & ohoh 2021). autism spectrum disorders paradigms are discrete and culture-specific (mohajan 2018; ntuli 2018) and are affected by an individual’s background information, like occupation and orientation towards culture (ugwu et al. 2021). the asd paradigm as recognised in western nations is not unique to any african country, nor do any african languages have words similar in meaning. however, most african cultures share the same paradigm of asd with western culture in that they perceive it as an illness, but they differ in how it is treated (bakare & munir 2011). autism spectrum disorders are known as usonji in kiswahili (bakare & munir 2011), meaning ‘disorders’. the causes of these disorders are witchcraft-related, but people from kiswahili-speaking cultures believe it is curable by just having more and more interaction of the diagnosed with many people via frequent conversations. the kiswahili perception of asd borrows a lot from the social model of disability. it emphasises social functioning rather than pathological deficits (bakare & munir 2011). in malawi, the chewa people refer to people with asd as osatha kukamba bwino, meaning ‘someone who can’t speak properly’ (mcfall 2016). the cause of asd in chewa culture is genetic or witchcraft. in isizulu, asd are known as ukungashintshiswa (mcfall 2016). its literal english translation is ‘not being changed’ implying a condition or state that cannot be altered or modified. like in most african cultures, the zulus believe that asd are attributed to various factors such as ancestral spirits or curses. in zulu culture, the treatment approaches for asd include traditional healing, such as spiritual rituals to address the perceived underlying spiritual causes. the maasai of kenya do not have a term for asd but the closest maasai word almodai corresponds to the western understanding of asd, which means ‘stupid’ (mpofu 2020). also, in zimbabwe, there are no terms in shona, ndebele or kalanga that correspond to the western definition of asd (mpofu 2020). the term ‘haana kukwana’ in shona that most closely resembles asd is ‘not enough’. a person who is inadequate could find it difficult to participate in social activities and could require assistance. autism spectrum disorders have a substantial impact on a young person’s development, leading to a range of social, emotional and cognitive difficulties, often with unique social deficits that affect their capacity to build relationships with their peers and disruptions in their emotional development (chapman 2019, 2020). among many issues, young people with asd tend to have less developed social skills than their neurotypical peers, which might exacerbate feelings of loneliness and anxiety (kasari et al. 2012) and may also have cognitive abnormalities, which are frequently typified by uneven cognitive profiles (brown 2014; ozonoff et al. 2015). some of these developmental implications can be lessened by early intervention, specialised teaching methods and social skills training (kasari et al. 2012). therefore, creating successful intervention programmes that can promote the development and well-being of young people with asd requires an understanding of the complex developmental effects of asd (lubin 2015). our study investigated self-perceptions of zimbabwean young people with mild to moderate asd in the context of their culture. research methods and design study design this qualitative study (kekeya 2019; kivunja & kuyini 2017) facilitated the exploration of self-perceptions of zimbabwean young people with asd in their cultural context using a variety of data sources (creswell 2014; dewi 2021; kekeya 2019). participants and setting participants included an equal number of males and females with mild-to-moderate asd (five each). table 1 provides additional demographic details. pseudonyms were used to protect identity and ensure confidentiality. table 1: demographic information of research participants. sampling procedure snowball sampling was used to recruit participants (kekeya 2019). as participants referred others within the asd community, we effectively expanded our sample size while maintaining relevance and diversity in experiences, resulting in rich qualitative data that accurately reflects the self-perceptions of youths with asd (creswell 2014). data collection participants responded to one question based on how young people with asd constructed their views and experiences of their self-perceptions. two focus group discussions consisted of five participants each. the focus group discussant (first author) recorded the discussions. to increase the credibility of our study, we extended participant involvement by including them in focus group discussions that lasted for 2 h (alharahsheh & pius 2020; roestenburg, strydom & fouche 2021). to get a fuller view of the phenomenon we were studying, we also triangulated the two focus groups’ information (roestenburg et al. 2021). the verbatim recordings were read to the participants to ensure that they were accurately recorded and that the participants were satisfied with the recordings (roestenburg et al. 2021). data analysis strategies thematic content analysis was employed to systematically analyse the data (kleinheksel, rockich-winston, tawfik & wyatt 2020). initially, the transcripts from the two focus groups were coded using an inductive approach, identifying salient themes and patterns related to self-perception (creswell 2014). each segment of data was scrutinised for recurring concepts, leading to the development of initial codes. these codes were then organised into broader themes that encapsulated the lived experiences of the participants (creswell 2014). the rigorous application of the constant comparative method facilitated the refinement of these themes, ensuring they were representative of the diverse perspectives within the sample. this coding process highlighted the nuanced complexities of self-perception formation among young people with asd. ethical considerations the study received ethical approval from the zimbabwe open university on 05 april 2023 (ref no. 6009/23). informed consent, from parents for participants below 18 years, was obtained and assent from these participants. results through their story-telling, the participants expressed that asd represents: (1) human variation, (2) it is not a disorder, (3) have a sense of friendship and belonging, and (4) normal and natural social emotional development. the themes are presented and supported by the participants’ verbatim accounts. theme 1: autism spectrum disorder is a human neurological variation the participants perceived that they look similar to their peers without asd. they explained that all people were different and they expressed that individual differences are normal human variations not something which can be classified as an adverse condition. they also reported that being different was normal. however, the participants expressed that asd was a handicapping condition. participants reflected that asd is not a disability and people with asd must be seen like any other person without a disability. the following example explains participants’ reflections on asd as a human neurological variation. some of the participants said: ‘i have asd. it’s a condition i live with it. it gives me some challenges here and there. i was born with this condition. every person has some form of conditions and people respond differently to environmental stimuli … my condition is just like other conditions including those without disabilities. thus, how i was created by god.’ (munetsi, male, 21 years, mild, not working, single parent) ‘i have asd it’s in my body. i was created like this and people must accept me like this. people are different.’ (taurai, female, 19 years, mild, not working, both parents) ‘i am a person first. i am not feeling any pain as a result of asd and i am comfortable with it the way susan, peter or sarah live without asd. we are human and humans are different.’ (lister, female, 15 years, mild, school, both parents) ‘asd is a condition like any other different conditions in our communities john is different to peter and so on that’s what’s in the world. i am not denying that it is not disabling but i want you to take note that people are different in this community.’ (taku, male, 19 years, mild, school, both parents) ‘a i see it asd is real. i was diagnosed of asd when i was young. the condition has its short comings but not in all facets, i can do other things perfectly better than my siblings without asd or any other youths in our community and need help in others.’ (pride, female, 18 years, mild, school, both parents) theme 2: autism spectrum disorder is not a disordered condition participants revealed that young people with asd are not a disordered population. they explained that asd is a disabling condition not a natural disorder. one of the participants, munetsi, said that he does not receive special treatment in his community because of having asd meaning he has order and not disorders. they reflected that asd is better defined as a unique way of seeing the world rather than a disorder. this position is then consistent with the neurodiversity movement, which maintains that neurological variances, including asd, are natural components of the human experience rather than pathological deficits. participants said they look like any other young people in their communities and go along well with them. the following are quotes supporting this theme: ‘i have order i am not a disorder. i only have asd and it’s not a disorder. i am not given special treatment at hospital because of asd but i’m treated like any other person not a person who is disordered.’ (munetsi, male, 21 years, mild, not working, single parent) a participant said the following, while laughing: ‘kkkkkkk [laughing] i think i am fine. i look like any other youth in our community. i’m not disabled. i’m just different to susan my friend but we go along very well.’ (takudzwa, male, 17 years, mild, school, both parents) one also said: ‘i think asd is like any other condition.’ (tatenda, male, 18 years, moderate, school, single parent) another nodded and said: ‘i have nothing to add what they all said is true.’ (marble, female, 17 years, moderate, school, both parents) theme 3: sense of friendship and belonging participants revealed that young people with asd have a sense of friendship and belonging. they narrated that they have friends at home and school like any other youth in their communities. they also said that they belong to various organisations in their communities, and the decision to have only a few friends rests with them. however, they also said some members of their communities were not willing to befriend them because of having asd. at a family level, they revealed that they are sources of joy. they also said they were learning a lot from their affiliate organisations, and their contribution to them makes them proud. these quotes support this theme: ‘my best friend is my little sister we play a lot together. my other family members are friends too but not as close as my sister. i go to school mix with friends and this gives me opportunities to learn from others.’ (takudzwa, male, 17 years, mild, school, both parents) ‘i have few friends but they are enough. i don’t need a lot of them … i’m a committee member of asd youth organisation. in this group i learn a lot and this is good to me and others.’ (taurai, female, 19 years, mild, not working, both parents) one participant contributed by saying: ‘my friends are few the reason is others don’t like me because i am having asd.’ (shamiso, female, 14 years, moderate, school, single parent) another echoed: ‘i am a source of joy in my family. i always act in a manner that attract attention from every member of our family. i’m loved. i love all of them too.’ (nyasha, female, 20 years, mild, not working, both parents) theme 4: natural and normal social emotional development the participants revealed that their social emotional development is natural and normal. they explained that like neurotypical persons, people with asd are capable of feeling negative social emotions, but they may choose to communicate those feelings in various ways. however, they revealed that persons with asd have normal social emotional conditions. they also explained that people have different emotional states and that is natural and normal. they elaborated that when people with asd experience negative emotions or feelings, communities view them as abnormal. the following are extracts from their narratives: ‘just like neurotypical persons, people with are capable of feeling emotions, but they may choose to communicate those feelings in various ways.’ (taku, male, 19 years, mild, school, both parents) ‘my social emotional development is stable. i react to social issues like any other person in my community.’ (tatenda, male, 18 years, moderate, school, single parent) another participant added: ‘asd is natural and normal, but when people with asd experience emotions or feelings, they struggle to change their feelings because they often feel them so strongly and it makes them viewed abnormal.’ (nyasha, female, 20 years, mild, not working, both parents) discussion young people with asd perceived themselves as having a human neurological variation. they explained that people are different and individual differences are normal. these findings suggest that instead of considering asd as a disease the condition must be seen as a neurological variant, highlighting its unique neurobiological foundation. autism spectrum disorders being seen as one of many human variations rather than strictly as a deficit has significant implications for young people with asd in africa. according to odom et al. (2021), reframing asd as a variation allows for a more inclusive approach that emphasises the strengths and capabilities of individuals with asd. this perspective fosters a more accepting community, promoting the idea that neurodiversity is a vital aspect of human experiences and identities (odom et al. 2021). in an african context, where cultural perceptions of disability can sometimes lean towards stigma and exclusion, this shift in viewpoint can lead to improved social integration and support systems for young people with asd. a study by agyei and owusu (2022) highlights that when young people with asd are viewed as part of the diverse spectrum of human variation, they are more likely to experience supportive environments that acknowledge their unique strengths. in this paradigm, educational interventions that celebrate diversity rather than focusing solely on remediation become essential. furthermore, embracing asd as a variation can positively influence self-perception among young people, contributing to higher self-esteem and reduced internalised stigma. these shifting views facilitate a greater sense of belonging and community engagement for young people with asd in africa. thus, there is a pressing need for advocacy that focuses on educating communities about asd as a natural human variation, which in turn could lead to transformative change in policies and practices that affect the lives of young people with asd in african contexts. such efforts are likened to a ripple effect, generating wider societal acceptance and paving the way for better integration of neurodiverse individuals into everyday life, ultimately enhancing their quality of life and sense of agency. the discourse surrounding asd in africa is gradually evolving, and embracing the neurodiversity paradigm holds promise for significant positive outcomes for young people with asd. young people with asd do not see themselves as being a disordered population. although asd is a disabling condition, it is a natural condition and not a disorder. autism spectrum disorders is better defined as a unique way of seeing the world rather than a disorder. this position is consistent with the neurodiversity movement, which maintains that neurological variances, including asd, are natural components of the human experience rather than pathological deficits. autism spectrum disorders is better defined as a unique way of seeing the world rather than a disorder. autism spectrum disorders as a nondisorder poses significant implications for societal attitudes, personal identity and policy development. studies indicate that individuals with asd who perceive their condition as neurodiversity rather than a disorder report heightened self-esteem and better mental health outcomes (milo et al. 2020). tewolde et al. (2021) highlight that when young people with asd are framed as part of a diverse cognitive spectrum, they feel empowered to embrace their identities, countering stigma and fostering a sense of community. this reframing challenge prevailing narratives that often depict asd solely in terms of deficits and limitations. furthermore, it encourages more supportive environments; young people with asd who view asd positively exhibit increased social engagement and improved adaptive skills, suggesting a correlation between self-perception and social outcomes (o’grady et al. 2019). in many african contexts, cultural perceptions play a crucial role in how asd is understood. for instance, in nigeria, brand et al. (2022) found that families who align their understanding of asd with the neurodiversity paradigm often become advocates for inclusive education policies. this advocacy not only leads to better educational opportunities for individuals with asd but also raises awareness about asd in broader societal contexts, thus challenging misconceptions. young people with asd have a normal sense of friendship and belonging. they belong to various organisations in their communities and learn a lot from their affiliate organisations and their contribution to them makes them proud. however, some members of their communities were not willing to befriend them because of having asd, although asd does not seem to be a barrier to friendship and belonging. communities need to understand that young people with asd should be allowed to take part in community activities and to develop genuine relationships with people without disabilities. studies on asd in africa highlight the profound implications of viewing asd as possessing normal senses of friendship and belonging. in many african societies, asd has historically been stigmatised, leading to significant challenges for individuals and families (siddiqi, ahmed & banerjee 2019). however, a growing body of literature suggests that reframing asd as a social asset can foster acceptance and promote inclusivity. olusanya et al. (2021) found that approximately 70% of participants with asd expressed a desire for community engagement when provided with supportive environments. this desire underscores the importance of integrating social value into perceptions of asd, advocating for the recognition of the unique skills and perspectives that young people with asd can contribute to society (davis & smith 2020). when communities in africa begin to embrace this perspective, it enhances the self-perception and social participation of young people with asd and challenges ingrained stereotypes that detract from their abilities. chibanda, cowan and moosa (2022) revealed that, in communities where asd is viewed positively, young people report increased participation in social activities, leading to improved mental health outcomes and a stronger sense of belonging. the notion of social value encourages collaborative efforts between families, educational institutions and government agencies to create inclusive policies and programmes. for instance, initiatives like inclusive education models have gained traction, providing tailored support that empowers youths with asd to thrive academically and socially (mokoena & lewis 2023). young people with asd perceive their social emotional development as natural and normal. like neurotypical persons, people with asd can feel emotional disturbances, and likewise they communicate these feelings in various ways which must not be misconstrued as being abnormal. the findings suggest that the concept of ‘a normal’ does not exist and people’s brains work differently, and there are differences in neurological development and function among individuals. this suggests that people should acknowledge, tolerate and accept a range of social emotional development variations. viewing social emotional development in young people with asd as natural and normal rather than as disorders requiring intervention can have significant implications for young people with asd in africa (rowley 2020). this perspective fosters acceptance and reduces stigma, which is particularly critical in cultures where disability is often misunderstood. nwokolo et al. (2018) emphasise that reframing asd as a natural variation in human neurodiversity allows for a more inclusive societal approach. when young people with asd perceive their condition as a unique aspect of their identity, it enhances their self-esteem and psychological well-being (nwokolo et al. 2018). in many african countries, there exists a gap in understanding asd, often compounded by cultural beliefs that can demonise or romanticise disability (abubakar et al. 2020). promoting an understanding of asd as a natural condition can empower young people with asd to challenge prevalent stereotypes and advocate for their rights (gabriel et al. 2022). additionally, when young people view their asd as part of natural human diversity, they are more likely to engage with peers and build social networks, which has been shown to mitigate feelings of isolation (murray et al. 2021). a greater change in focus of the professional and research community from observing the pathology of asd to the previously discussed neurodiversity paradigms has enormous implications for asd. further exploration of the impact of neurodiversity paradigm on the lives of young people with asd may lead to the development of broader social and community resources for people with asd. at the same time, a deeper understanding of neurodiversity paradigm can change how existing services are currently provided to people with asd. in addition, analysing how the neurodiversity paradigm affects the lives of persons with asd may aid in the development of strategies to enhance public comprehension of asd and dispel preconceived notions and historical stigma. consequently, this may contribute to the well-being of young people with asd. limitations a major limitation of this qualitative study was the small sample size and geographical restriction. with only two focus groups of five participants each, the findings may not be representative of the broader population of young people with asd, limiting generalisability. additionally, the focus on a single geographical location may overlook cultural and socioeconomic factors that influence self-perception in diverse contexts. conclusion our results showed that these young people with asd are highly influenced by a neurodiversity approach to asd. they see asd as a human difference, that is natural. these findings suggest that, in addition to other sociodemographic variables, self-identity of the individual is important when evaluating the living situation of people with disabilities. acknowledgements the authors wish to express gratitude to the study participants and some artificial intelligence used in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.m. conceptualised the study, carried out literature review, contributed to the design, data collection and analysis and wrote the first and final drafts. m.m.s. discussed the study layout, reviewed the study, assisted with study results, reviewed the final draft and supervised the study. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available from the corresponding author, j.m., upon reasonable request. the data are not publicly available due to privacy restrictions. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references abubakar, a., ssewanyana, g., de vries, p. & newton, c., 2020, ‘understanding autism in africa: cultural constructions and implications’, journal 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neurodiversity, avery, london. ugwu, c., ekere, j. & onoh, c., 2021, ‘research paradigms and methodological choices in the research process’, journal of applied information science and technology 14(2), 116–124. world health organization, 2016, pervasive developmental disorders, icd-10 version: 2016, viewed 28 november 2024, from http://apps.who.int/classifications/icd10/browse/2016/en#/f84. abstract introduction theoretical framework research methods and design results discussion conclusion acknowledgements references about the author(s) siyabulela mkabile department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa department of psychiatry and mental health, faculty of health sciences, university of cape town, cape town, south africa kathrine l. garrun department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa mary shelton faculty of health sciences, university of cape town, cape town, south africa leslie swartz department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa citation mkabile, s., garrun, k.l., shelton, m. & swartz, l., 2021, ‘african families’ and caregivers’ experiences of raising a child with intellectual disability: a narrative synthesis of qualitative studies’, african journal of disability 10(0), a827. https://doi.org/10.4102/ajod.v10i0.827 research project regestration: project research number: rec-2017-0724 review article african families’ and caregivers’ experiences of raising a child with intellectual disability: a narrative synthesis of qualitative studies siyabulela mkabile, kathrine l. garrun, mary shelton, leslie swartz received: 15 nov. 2020; accepted: 05 feb. 2021; published: 30 apr. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the prevalence of intellectual disability was high in africa, particularly amongst low socio-economic communities. despite this, there was limited literature on primary caregivers and parents of people with intellectual disabilities regarding their experience raising an individual with the condition, especially within the african context. objectives: the aim of the current systematic review was to investigate experiences of caregivers and parents of children with intellectual disability in africa. method: we used strict eligibility criteria to identify suitable studies. we identified medical subject headings (mesh) terms and other keyword terms and, after conducting searches in electronic databases, identified articles that met the inclusion criteria for articles published between 1975 and the end of 2019. results: 164 articles were assessed for eligibility. nine studies met the review’s criteria. six major themes emerged: understanding of intellectual disability (id), worries about the future, burden of care, lack of services, coping strategies and stigma and discrimination. conclusion: caregivers of children with intellectual disability in africa faced substantial challenges. current findings suggested that there was the need for both formal and alternative healthcare workers to work together towards an understanding and management of intellectual disability in africa. keywords: intellectual disability; children, families; africa; caring; experience; culture; services. introduction despite the higher prevalence rate of intellectual disability (id) in lowand middle-income countries (lmic) compared with high-income countries (maulik et al. 2011), there has been limited research in lmic and in africa specifically (adnams 2010; mckenzie, mcconkey & adnams 2013). a number of studies have reported that parents and caregivers of children with id report negative experiences compared with those raising children without id (bristol, gallagher & schopler 1988; dyson 1997; hayes & watson 2013; lloyd & hastings 2009; olsson & hwang 2001). some studies reported that parents of children with id may experience anxiety, post-traumatic stress disorder (ptsd) and even depression when told about the diagnosis of their children. other studies have demonstrated that parents may experience high levels of stress during the caring process, especially when a child presents with a challenging behaviour (hassall, rose & mcdonald 2005). this situation is exacerbated for parents and caregivers living in low-income countries, with parents reporting more severe levels of stress, severe sadness, family difficulties, financial difficulties, stigma, shame and discrimination (azar & badr 2010; mckenzie & mcconkey 2016; sen & yurtsever 2007; tilahun et al. 2016). some studies have demonstrated the role played by culture and religious beliefs in shaping caregiver and parental experiences in caring for a child with id. whilst significant contributions and strides have been made in the literature on caregivers’ and parents’ experiences in various contexts, little is known about the experiences of black african caregivers and parents of children with id in africa, where specialised services for people with intellectual disability (pwid) and their families are limited or non-existent. a scoping review on services for children with disabilities in lmic (magnusson, sweeney & landry 2019) indicates the paucity of services and consequent impact on families. it is clear that access to rehabilitation services in africa is a challenge (morris et al. 2019). for african caregivers and parents, experiences and outcomes of raising or caring for pwid are expected to be worse, in part because of the legacies of colonialism (and in some countries, apartheid), poverty and poor living conditions in africa. in addition to other challenges, these families have been reported to have high rates of single parenthood, child-headed households, fatherlessness, alcohol abuse and domestic violence (scior et al. 2015). in southern africa and other parts of the continent, the effects of migrant labour, where men have to leave their wives and children to seek employment, usually in the cities, have also significantly affected black african families. the displacement of family members during political struggles in a number of countries might have also contributed to the current functioning and structure of the african family system (siwella 2011). most work in the field of id in africa has been conducted in south africa. however, important publications from the continent at large do exist. gona et al. (2015) write about the perceptions of professionals and parents on the causes and treatment options for autism in kenya. the authors conducted a qualitative study in a multicultural context and found that, regardless of culture, participants held similar perceptions regarding the causes of, and treatment options for, autism. similar to that what has been found in other contexts (mckenzie & mcconkey 2016), in kenya, caregiver perceptions about the causes of autism ranged from supernatural beliefs, such as evil spirits, witchcraft and curses, to biomedical causes related to infections, drug abuse, birth complications, malnutrition and hereditary conditions (gona et al. 2015). perceptions regarding treatment options encompassed both biomedical and traditional and spiritual methods of healing (gona et al. 2015). indeed, across the continent, it has been reported that it is common in african cultures to use both western and traditional healing systems (kromberg et al. 2008). whilst it has been suggested that, in different cultural contexts, negative reactions may be moderated by cultural support systems or may be exacerbated by cultural beliefs and taboos (empson 2015; serpell, mariga & harvey 1993), the evidence, either in favour of or against this view in urban settings, is sparse in urban african settings (empson 2015). one country where african cultural beliefs were found to be associated with negative reactions in some instances, but promoted the social inclusion of people with disabilities in others, is swaziland (ndlovu 2016). a global review on stigma and awareness raising by scior et al. (2015) reported that in lmic, including countries in africa, children and adults with id continue to experience high levels of stigma and are denied many rights and freedoms enjoyed by people without id. scior et al. (2015) observed the invisibility of pwid: [i]s accompanied by low expectations of people with intellectual disabilities, in many countries they are still widely viewed as incapable, unable to live independently or contribute to society. respondents noted that in many parts of africa and asia, in russia, and in some parts of south and central america there is often still an active desire to segregate people with intellectual disabilities from society due to deep rooted prejudice or stigmatising beliefs about the causes of intellectual disability. (p. 4) these studies indicate that cultural beliefs, as well as religious belief systems, may offer important contributions to our understanding of how people with id are perceived in africa. when considering the south african context (the african country with the highest research output), specifically with regard to the question of disability, it becomes clear that, despite the fact that south africa is an upper middle-income country, serious challenges resulting from lack of resources and inherent socio-economic inequalities continue to prevail in black african communities (makiwane 2010). in addition, the majority of black africans remain trapped in extreme poverty, with many still lacking access to basic resources and infrastructure (pillay 2008). furthermore, broader studies on mental health on the continent suggest that mental health services for children are extremely limited in some african countries (yoder et al. 2016). these challenges further complicate and frustrate parental efforts to provide care and support for their child with id (ataguba, akazili & mcintyre 2011). as such, raising a child in a black african family that experiences an overwhelming psychological reaction associated with discovering that the child has id, in a context of widespread poverty and deprivation, may be complex (mbazima 2016). some studies on african families have reported strong traditional belief systems and it is important to understand how these beliefs are shaped or challenged by the birth of a child with id. it is also important to understand how african families cope with the reported stigma associated with the birth of a child with id (unicef 2012). in light of the above discussion, it is imperative that we understand how the birth of a child with id affects the family system in a complex low-income african context. in order to address this need, we conducted a narrative synthesis of qualitative studies on the subjective experiences of caregivers and parents of children with id regarding their caregiving experiences in order to identify gaps in the literature regarding caregiver or parent and family experiences in africa. we chose to focus on qualitative research owing to the paucity of information and the lack of validated quantitative instruments in the african context (christianson et al. 2002). qualitative research is likely to provide detailed in-depth descriptions on which further work can be based. our primary aim in this article is to review what is known about the experience of being a family caregiver for a child with id in africa. we believe that the imbalance of knowledge between wealthier and less wealthy countries regarding disability and specifically caring for a child with disabilityrequires more careful and thoughtful consideration, especially given the fact that disability is more prevalent in low-income contexts (swartz 2014; swartz & marchetti-mercer 2018). theoretical framework to our knowledge, there is no review that has attempted to examine the experiences of caregivers and parents of children with id in africa. a review from africa examined human rights of individuals with intellectual disabilities in south africa. although in their review (swartz & marchetti-mercer 2018), they make a distinction between a social and a medical model of disability, the review does not apply a socio-ecological approach. in the current review, we examine the experiences of caregivers and parents of children with id in africa using the socio-ecological model (bronfenbrenner 1992) in order to identify potential targets for change in the provision of id services in africa across various systems. evidence suggests that most caregivers and parents of children with id report a number of negative experiences across all levels of care. bronfenbrenner’s socio-ecological model is helpful in exploring experiences of various sectors of care and support (bronfenbrenner 1992). in line with this framework, caregivers and parents may have both positive and negative experiences of caring for a child with id through their day-to-day interactions with different levels of healthcare and other systems. bronfenbrenner (1992) describes the social context as characterised by five dynamic interdependent and interrelated systems. these are the micro-, meso-, exo-, macroand chrono-systems. our key interest in this review is on the micro-system at the family or household level, but as bronfenbrenner (1992) observed individuals have continuous interactions across different levels of the social context. individuals might be influenced by, or might have influence through their continuous interaction with various systems. in order to develop a nuanced understanding of the caregivers’ and parents’ experiences, it is important to gain a deeper insight into the types of individuals’ lived experiences, the level of the social context at which experiences occurred and the consequent impact. bronfenbrenner’s (1992) framework takes due account of both material and cultural factors and facilitates an understanding of caregivers’ experiences of id and its management at various levels and within different healthcare systems (swartz 1998). although our own approach to the field is influenced by a contextual understanding of local explanatory models and practices (mkabile & swartz 2020), we did not select articles based on any specific theoretical orientation. indeed, we show here that there is a paucity of research on our topic of interest; an aspect of our motivation for undertaking the review is to demonstrate the scant state of current knowledge in the area and to encourage further research. research methods and design search strategy we followed the preferred reporting items for systematic review and meta-analysis (prisma) guidelines to conduct our study. we searched ebscohost, pubmed, web of science and scopus. we searched for studies from 1975 to 2019, a longer period than is common, in order to access as many articles as possible from what we perceived would be a sparse field. a shorter time frame might have severely limited the number of eligible studies (meline 2006) on experiences of raising a child with id in africa. the search terms used are presented in box 1. box 1: search by medical subject headings (mesh) terms. we used braun and clarke’s (2006) thematic analysis for the synthesis of studies selected for review; thematic analysis was the dominant mode of analysis in the reviewed studies. thematic synthesis, based on braun and clarke’s (2006) approach, was used to combine results from all nine studies on caregivers’ experiences of raising a child with id in africa. this was a three-stage process involving: (1) the initial line-by-line coding of the results of all nine studies, (2) organisation of codes to construct descriptive themes and (3) the development of analytical themes (braun & clarke 2006). although there are few studies that have used this approach for systematic reviews (thomas & harden 2008), thematic analysis is flexible and uses an inductive approach, which allows for the generation of themes. seven studies that we reviewed (aldersey 2012; aldersey, turnbull & turnbull 2014; gona et al. 2011; lamptey 2019; masulani-mwale et al. 2016; nkhosi & menon 2015; ntswane & van rhyn 2007) used qualitative methods and two studies (ajuwon & brown 2012; tilahun et al. 2016) used mixed methods with a substantial qualitative component, providing sufficient qualitative material for this synthesis. screening and study selection there were initially 3428 articles identified through database searching (see figure 1). after removing 1374 duplicates, 2054 articles remained and the abstracts perused. of these, 720 articles, which clearly did not fall within our review’s area of concern, were removed based on exclusion criteria such as having been conducted on animal, not human, subjects and being conference papers, reviews, books and other grey literature, rather than journal articles. a further 1318 were then systematically removed during a process of screening abstract titles. subsequently, 164 full articles were screened, leaving the final nine, which met all identified criteria. figure 1: prisma diagram. eligibility criteria studies included in the review met the following criteria: (1) contained empirical research utilising qualitative research methodology, (2) focused on caregiver, parents or family experiences of raising a child with id and (3) articles focused on african countries or africa. table 1 details the inclusion and exclusion criteria. table 1: eligibility inclusion and exclusion criteria. data extraction for full extraction of data, all duplicates were identified and removed. following the removal of all duplicates, the remaining studies were screened for the full text. we then assessed the full text articles for eligibility by perusal of the abstracts. all full text articles that did not meet the eligibility criteria were excluded. all the articles that were obtained following assessment were then appraised by the three authors to ensure that they met the criteria for inclusion. all disagreements were resolved through discussion. finally, the results from the eligible studies were systematically recorded on a summary sheet (see table 2, for the articles extracted). table 2: data extraction. risk of bias nine studies met the inclusion criteria and were assessed for risk of bias (rob). the joanna briggs institute (jbi) critical appraisal checklist for qualitative research (cac) (joanna briggs institute 2017) was used for this purpose. the cac focuses on the design, conduct and analysis. the rob assessments were administered to select studies for the analysis. s.m. conducted the rob assessments and these were followed by discussions between s.m. and l.s. until consensus was reached. the details of quality assessment are provided in the supplementary material. ethical considerations approval to conduct the study was obtained from stellenbosch university rec: humanities – reference number: rec-2017-0724. results characteristics of identified studies the nine studies included in the review described the experiences of participants who have some form of relationship with, or have experience in caring for, a person with id. participants included families who have a family member or members with id, caregivers and community members. the study samples for all nine studies were attained from a wide range of sources. these included homes of the pwid, children’s development centers, open doors for special learners, on the streets, special schools, vocational centres for people with intellectual developmental disorder (idd), parental meetings and outings with the children. with the exception of two studies, all studies were qualitative. the two exceptions were studies that applied mixed methods and offered sufficient qualitative data to be included in the final nine articles. data collection consisted of interviews, questionnaires, in-depth interviews, standardised methods (e.g. family quality of life survey), observation methods and focus group discussions. using braun and clarke’s (2006) thematic analysis, we identified six themes (see box 2) across the articles. these were understanding of id, focussing on issues such as the meaning of id, cultural beliefs, cure-seeking behaviour, stigma and discrimination; worries about the future, including death concerns, employment concerns, concerns about marriage and concerns about substitute caregivers; burden of care, referring largely to mental health concerns and depression in caregivers; lack of services, including gaps in education, health and social services; coping strategies and stigma and discrimination. box 2: major themes identified. quality ratings of identified articles based on the jbi critical appraisal checklist for qualitative research assessment results based on cac for qualitative research indicate that the quality of the nine studies was generally high. however, a source of possible bias was the lack of documented reflection on the possible influence of the researcher and the participants (see table 2). experiences of caregivers and parents living with children with intellectual disability nine studies were extracted and table 2 shows an overview thereof. next, these studies are discussed by theme. understanding and meaning of intellectual disability three studies sought to understand the causes and meaning participants gave to the diagnosis of id (aldersey 2012; aldersey et al. 2014; tilahun et al. 2016). all three studies looked at perceptions, understandings and explanations that caregivers and parents attribute to their children’s id. results show that various explanations were used in various communities across africa depending on various cultural backgrounds. one qualitative study conducted participant observation and semi-structured interviews with family members of pwid and community members in kinshasa, republic of congo (aldersey et al. 2014), and reported that causes and meanings of id in this population were founded on the belief that everything, including the occurrence of id, happens for a reason. reasons attributed to id include superstition and mysticism, exemplified in the beliefs that the disability is a result of punishment from god, superstition about bewitchment and demon possession. the authors note that: [u]nderstanding distinctions around the visible and invisible worlds is important in understanding the construction of meaning regarding id in kinshasa. in general, participants understood the causation of id in biomedical (visible) or metaphysical (invisible) terms or a combination of both. (aldersey et al. 2014:226) similarly, a study in ethiopia, which utilised a mixed methodology approach to examining caregivers’ explanatory models of id, reported that caregivers cited a combination of biomedical and supernatural factors as the cause of id (tilahun et al. 2016). biomedical factors included head injuries, birth complications, pathogens, epilepsy and family history. supernatural factors included the belief that id was a form of punishment from god, demon possession and bewitchment. in this study, caregivers also admitted seeking cure from traditional practitioners as the first form of treatment following a diagnosis of id, whilst others indicated seeking help from a biomedical practitioner, and across both groups, many had additionally sought help from other alternative sources such as religious healing centres, churches, priests and traditional healers (tilahun et al. 2016). worries about the future the future for the individual with id was a common concern identified in some of the studies in the review (ajuwon & brown 2012; aldersey et al. 2014; gona et al. 2011). future concerns varied from death of a primary caregiver, having one’s own family and finding employment. death of a primary caregiver emerged as a major concern across the studies reviewed. some studies perceived the importance of equipping individuals with id with skills through education and training in order that pwid would be capable of looking after themselves should their caregiver pass away. without these skills, caregivers reported that individuals with id may struggle to contribute to meaningful social interactions (nkhosi & menon 2015). in addition, certain caregivers in some studies were concerned about who would replace them as primary caregivers should they die (masulani-mwale et al. 2016). furthermore, there were concerns about difficulty in finding employment for individuals with id. these caregivers expressed disappointment that even post-school, the individual with id would not be able to find work and gain independence, given the level of competency society expects of school-leavers (gona et al. 2011). challenges of caregivers of children with intellectual disability: burden of care all reviewed studies explored challenges faced by caregivers of children with id and reported that families experienced challenges with attaining support from services and from others or both. in particular, challenges were experienced with accessing disability and psychological services (masulani-mwale et al. 2016). caregivers also talked about how an id diagnosis shattered their dreams for their children (gona et al. 2011). in the study by tilahun et al. (2016), other challenges caregivers talked about included special needs educational services for their children, lack of treatment by a health professional, financial support to meet basic needs such as food and access to support from professionals in the management of a child with id. access to healthcare was also identified as a challenge by lamptey (2019). most of these studies reported that there is a significant lack of specialised education centres for children with id and, in those countries, where they do exist, they are privately owned and very expensive. caregivers and parents are then forced to resign from their jobs to provide full-time care for their children with id. other studies also reported a lack of specialised id treatment services in some countries in africa and these contributed to mental health difficulties experienced by both caregivers and children with id themselves (masulani-mwale et al. 2016). in addition, one of the studies assessed quality of life for families of children with id (ajuwon & brown 2012). results from this study revealed that challenges experienced by caregivers and parents significantly compromised their quality of life. most caregivers in the studies reviewed expressed concerns about their own mental health. they described caring for an individual with special needs as being very stressful and, at times, traumatic. most difficulties were attributed to the general presentation of the person with special needs. problems were reported when there were challenging behaviours and a lack of basic skills (masulani-mwale et al. 2016; nkhosi & menon 2015). types of challenging behaviours reported in these studies included physical aggression and inappropriate urination and defecating in public spaces. caregivers reported that managing these difficulties was extremely stressful, evoking humiliation and embarrassment. interestingly, none of the participants questioned the fact that the burden of care falls almost exclusively on women, and only one study (masulani-mwale et al. 2016) raised the issue of possible respite opportunities for caregivers. lack of specialised intellectual disability services concerns regarding the lack of specialised id services for pwid and their caregivers presented as a significant concern for most participants in all studies reviewed, especially for those who expressed an interest in utilising such services. the review shows that pwid present with various difficulties requiring specialised clinical care from trained specialists. although the caregivers’ help-seeking behaviours are generally determined by their belief systems, some participants in the reviewed studies expressed frustration regarding the lack of specialised services for pwid in their countries. these services include education, health and social services. in countries such as nigeria, government policies on id reportedly do not exist (kagee et al. 2013). in two studies, participants who needed these services reported numerous attempts at trying to access government services without success (masulani-mwale et al. 2016; nkhosi & menon 2015). data reveal that in some countries in africa such services were terminated and were never established in others. in some countries, services such as specialised education or training are private and very expensive. as a result, most participants could not afford them. participants also believed that they could benefit from specialised mental health services for themselves and for the individuals for whom they were caring, but these services were not available in their communities. most participants reported that they needed mental health services, not only for their own psychological difficulties but also for their children’s behavioural and skills training. most caregivers reported symptoms of depression and anxiety, which often overwhelm them and make it difficult to cope. for this, psychological services were identified as an urgent need to help them in dealing with these feelings. coping strategies a number of studies reviewed described coping mechanisms of caregivers of children with id. findings from the majority of studies show that most participants used spirituality to cope with stress related to caring for a child with id (aldersey et al. 2014; masulani-mwale et al. 2016; tilahun et al. 2016). some studies in the review reported that most caregivers adopted spiritual interventions to cope with their situations. relying on spiritual beliefs, some accepted that giving birth to, or caring for a child with, id was god’s will. these caregivers would then take their children to churches to pray for deliverance. in addition, caregivers have reportedly used prayer as a coping mechanism even when at home. however, not all caregivers were fortunate enough to receive support from their churches; some were scared of going to church, fearing discrimination. masulani-mwale et al. (2016) reported on how some caregivers abandoned their faith because they were not fully accepted by their communities. on the other hand, gona et al. (2011) highlighted two coping strategies used by caregivers, with these strategies being problem focused and emotion focused. caregivers reported empowering themselves by learning new home-based skills to better manage individuals with id in their home environments. the authors describe how the caregivers trained their children to acquire basic skills such as walking and sitting. for them, this was necessary as access to professional services was scarce. caregivers in this study also reported using emotion focused interventions to cope with the difficulties of caring for a child with id. they indicated seeking spiritual support by going to church. some also reported taking their children with id to priests for deliverance. in addition, caregivers gathered together to share their experiences of caring for a child with special needs. through this, they learned from each other’s experiences and advised each other on various issues. these findings were similar to those reported by tilahun et al. (2016) who found that participant coping mechanisms included talking to a supportive adult and seeking religious guidance. for a minority of participants, coping involved the use of substances. stigma and discrimination most of the communities in which the studies in the reviews were conducted have proven to have very strong cultural beliefs. in most of the reviewed studies, caregivers and parents of pwid have reported being stigmatised because of others’ negative cultural beliefs and most of them reported having been subjected to high levels of stigma by their communities for caring for an individual with id (ajuwon & brown 2012; lamptey 2019; masulani-mwale et al. 2016; tilahun et al. 2016). some were called derogatory names and accused of intentionally causing their child’s id as a way of gaining wealth because of their child’s disability (masulani-mwale et al. 2016). in addition, studies have reported that some communities within the african context perceive individuals with id to be cursed or spirit possessed, resulting from sinful actions or punishment from god (tilahun et al. 2016). in addition, masulani-mwale et al. (2016) found that certain caregivers and parents reported having been advised by some members of the community to kill their children with id, advice which was rejected by the caregivers. tilahun et al. (2016) further reported that participants worried ‘sometimes’, ‘often’ or ‘a lot’ about being treated differently. furthermore, in this study, many participants worried about taking their child out of the house; felt ashamed or embarrassed about their child’s condition; felt a need to hide the problem from people in the community; made an effort to keep their child’s condition a secret and worried that people would be reluctant to marry into their family. discussion the results demonstrate both positive and negative experiences of those caring for pwid in africa across all levels of the social system. the studies reveal the poignant reality of the daily struggles faced by pwid and their families. in terms of bronfenbrenner’s ecological framework, it is clear that caregivers and parents’ experiences are generally negative across a number of levels, from the micro-level of the family, through community and religious levels, to issues of care provision in african economies, all within the framework of global inequality. themes associated with the micro-level included worries about the future and the burden of care having negatively affected their life experiences. most participants across all nine studies expressed concerns about the future of their children with id in the event that they should pass away. others complained about not being supported by their extended family members, thus increasing the burden of care. studies investigating parenting in the context of a family member with id have reported similar findings where caregivers and parents of children with id had to rely on their internal attributes, such as resilience, to cope rather than relying on others (breitkreuz 2014). in addition, at the micro-level, caregivers and parents struggled with mental health difficulties, including anxiety and stress, again in common with studies elsewhere. perhaps more in the african context than elsewhere, given lack of access to resources and lack of custodial care, caregivers’ anxieties seem to be rooted in their perceived treatment by society, especially as this relates to society’s beliefs regarding the causes of id. lack of residential and day-care facilities result in pwid being cared for at home and in the community, thus unable to hide away from stigma, whereas some families, as in wealthier contexts, hide their family members with id from the public eye (aldersey et al. 2014; haley & perkins 2004; macdonald & hastings 2010). themes identified within the meso-system associated with services for pwid reveal the plight of caregivers and families of pwid in relation to accessing specialised services for their loved ones, as well as supportive services for themselves. the majority of studies reviewed have reported on the underdevelopment of id and mental health services in africa in general. it is also clear from the articles we reviewed that the macro-system has a significant influence on caregivers’ and parents’ experiences of raising a child with id. most of the studies we reviewed reported on cultural or spiritual beliefs and the local resource context. there is a risk that beliefs that are viewed as superstitions are overemphasised in the literature, with more practical concerns being given less attention. in this regard, it is interesting that most recent of the articles reviewed (lamptey 2019) open with a discussion of superstition and reliance on religious interventions, but the primary focus of the article is on the lack of access to resources, including healthcare resources. if people have not had access to all that biomedicine has to offer, then it is not surprising that their beliefs centre on explanations from other paradigms. in other words, what is presented as a difference in world view or belief system may in part be attributable to a difference in terms of access to resources. in this regard, it is interesting that in the studies cited, there was a general understanding that the causation of id was both supernatural and biomedical. it is clear that beliefs regarding the causes of id, such as punishment from god, bewitchment, witchcraft and demon possession, do occur and need to be taken seriously; however, these are not the only views held in africa. these findings are consonant with those from previous studies from various parts of the world, showing, in multiple contexts, that there are a range of explanations for the causes of id (aldersey et al. 2014; scior & furnham 2011; scior et al. 2015; treloar 2002). participants in the studies we reviewed used both western and indigenous health systems, but this is not a feature of african parents in particular – throughout the world, people seek to understand id in a range of ways and may make use of a range of help, including services based on spiritual beliefs quite at odds with biomedical services (sango & forrester-jones 2017). perhaps what is most striking, then, in our review, is not that parents relied on many systems of belief and help (this is in fact universal), but that the issues that parents and caregivers face are so similar to those reported in the literature in other parts of the world. the studies we reviewed showed evidence, which is common in the literature, of issues of shattered expectations, difficulties in adjustment and search for meaning in the context of the diagnosis of id. what was strikingly different from the rest of the literature is the impoverished context of these parents and lack of access to the kinds of resources sometimes taken for granted elsewhere. religion and spiritual beliefs are relied on heavily in this context, not necessarily because these are inherently more important here, but possibly because there is in reality little else on which people can rely. an important implication of our study is that for the field of id research to move forward globally, it is important to pay close attention to contextual and social factors. the experiences of caregivers in africa are profoundly influenced by context and especially by lack of resources. for id research to move forward, it is important to understand that the challenges faced by african parents are the rule rather than the exception in the global context. the findings of this review present a number of practical implications for service provision in the field of id. in particular, the review highlights the need for support services for caregivers of children with id. support services can be in the form of counselling and practical guidance from professionalised id services. there is also a need to understand and leverage the informal forms of support caregivers identified as crucial support systems. these include spiritual and faith healers, prayer groups and churches. finally, this review has identified the lack of specialised health, education and social services for pwid. it is clear from our study that much research is urgently needed on this topic, paying due regard to contextual issues and cross-cutting themes. given the paucity of research, it is difficult to make arguments for policy changes, but accessibility of services and stigma are two clear emergent policy concerns. a limitation of the review is that it does not provide a detailed in-depth analysis of the experiences of caregivers of children with id, as there were very few studies, conducted in vastly different settings, employing different methodologies. however, it does provide an important starting point to understanding this topic within the african context. the paucity of research on this topic is a major problem; with hindsight, conducting a grey literature search on this topic might have provided a more in-depth analysis. conclusion a particular strength of this review is that it is the first of its kind in the african context, exploring caregivers’ experiences of raising and caring for a child with id and thus addressing a gap in research into pwid and their caregivers. findings of the review reveal that caregivers of children with id in africa face challenges regarding the lack of critically required specialised services for pwid in their countries. these services include education, health and social services. findings indicate a need for formal and alternative healthcare sectors to work together in the understanding and management of id in africa. furthermore, these findings raise important implications for research. too few studies on id have been conducted in the african context. even fewer have been conducted on the particular experiences of those living with id or caring for someone with id. only nine studies were suitable for inclusion in this review and even these studies did not demonstrate a uniform methodology, which is a key feature of a rigorous systematic review. thus, a key implication for research is the need for more studies, particularly qualitative studies, to be conducted in the field of id in different african contexts, exploring the role of culture, cultural beliefs, informal support systems and coping in the management of id. what is also noteworthy is that despite the focus on cultural issues in the research that are on id in africa, there is relatively little engagement with questions related to the implications for african people of collectivist rather than individualist ideology and patterns of care. in disability studies more generally, there is increasing discussion of questions of africanisation and decolonisation of knowledges (mbazzi et al. 2020; mji 2019; owusu-ansah & mji 2013), but there has been less discussion of this in id and family research. future studies may well explore whether this is a fruitful line of research, helpful to children with id in africa and those who care for them. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all the authors were involved in the development and writing up of this article. s.m. was involved with the idea, conceptualisation, research question, methodology, investigation, writing up, data analysis, administration, revisions and correspondance. k.l.g. is a librarian and spent a significant amount of time with the investigation that included database searches, validation and data curation. m.s. is a senior librarian who also spent a significant amount of time on search words, database searches, methodology, investigation and validation. l.s. as a senior researcher has provided a supervisory role, involved in conceptualisation, methodology and formal analysis and assisted in writing and reviewing this article. funding information this research received no specific grant from any funding agency in the commercial or not-for-profit sectors. data availability this is a systematic review of literature. any database related to the reviewed studies will be made available on request. disclaimer the views and opinions 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notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. impact of inaccessible spaces on community participation of people with mobility limitations in zambia in this original research... open access • abstract • introduction • purpose • methods    • study design    • study locations    • participants    • ethical considerations    • data collection procedure    • focus groups    • nominal group technique • data analysis • results    • study participants    • ranking of public buildings identified as inaccessible    • experiences of participation restrictions and impact       • the built environment       • perception of inaccessibility       • coping with inaccessibility experiences    • similarities and differences between urban and rural areas • discussion    • study limitations and future research • conclusion • acknowledgements    • competing interests    • authors’ contributions • references • appendix 1 abstract top ↑ background: the study investigated the perspective of people with mobility limitations (pwml) in zambia, firstly of their accessibility to public buildings and spaces, and secondly of how their capacity to participate in a preferred lifestyle has been affected.objectives: firstly to provide insight into the participation experiences of pwml in the social, cultural, economic, political and civic life areas and the relationship of these with disability in zambia. secondly to establish how the zambian disability context shape the experiences of participation by pwml. method: a qualitative design was used to gather data from 75 pwml in five of the nine provinces of zambia. focus group discussions and personal interviews were used to examine the accessibility of the built environment and how this impacted on the whole family’s participation experiences. the nominal group technique was utilised to rank inaccessible buildings and facilities which posed barriers to opportunities in life areas and how this interfered with the whole family’s lifestyle. results: inaccessibility of education institutions, workplaces and spaces have contributed to reduced participation with negative implications for personal, family, social and economic aspects of the lives of participants. government buildings, service buildings, and transportation were universally identified as most important but least accessible. conclusion: zambians with mobility limitations have been disadvantaged in accessing services and facilities provided to the public, depriving them and their dependants of full and equitable life participation because of reduced economic capacity. this study will assist in informing government of the need to improve environmental access to enable equal rights for all citizens. introduction top ↑ accessibility of the built environment is regarded as being pivotal to ensuring equity of participation for people with disabilities and has evolved internationally as a topic for concern over recent decades. the built environment can either facilitate or hinder full participation in mainstream society and is considered fundamental to integration, inclusiveness and equality for all as reflected in the united nations convention on the rights of persons with disabilities (un crpd) (un convention 2006; un 1993; who 2001). specifically, an inaccessible built environment gives an individual with mobility limitation fewer opportunities to participate in education, training and employment, and, limits their experience of positive life situations (imrie & hall 2001d; resnik & plow 2009; wee & paterson 2009). of particular importance in this article is the relationship between the individual’s limited participation in consequent education, training and employment opportunities and economic status due to inaccessible built environments and the long-term effects on the family. there is indisputable evidence in many parts of the world (barnes 1991a; barnes 2002; evcil 2009; fange, iwarsson & persson 2002; imrie & hall 2001d), that an inaccessible built environment limits the chances for opportunities for people with mobility limitations (pwml) (imrie & kumar 2010), making the family less likely to attain a desired economic status. despite many studies conducted in other countries, to date information is lacking on how participation is influenced by environmental barriers in a developing country such as zambia. to understand the influence of environmental barriers on participation by pwml, experiences of people with disability (pwd) themselves need to be explored, as relying on proxies to gain this information leads to incomplete data (bromley, matthews & thomas 2007; hammel et al. 2008; imrie & kumar 2010 ). access to the built environment is a right for every citizen (un convention 2006), regardless of their physical abilities, as it connects the individual to the environment and affords him or her the freedom to participate in different activities of life with ease (evcil 2009; iwarsson & stahl 2003). the international classification of functioning disability and health (icf) (who 2001), article 9 of the un convention on the rights of persons with disabilities (crpd) (un convention 2006) and rule 5 of the standard rules on the equalisation of opportunities for pwd (un 1993) all advocate for the inclusion of pwd through an accessible environment. understanding how the built environment affects the participation of people who use mobility devices such as wheelchairs and crutches is important in understanding why an inaccessible built environment should be made accessible. in most parts of the world, there is ample evidence that the environment negatively affects the participation of people with disabilities, hence efforts to reduce the barriers for example in education and employment (riddell, tinklin & wilson 2004; rogan et al. 2007). having a paid job is a powerful catalyst for changing other areas of one’s life, for example in social, political, civic and leisure situations, making employment an anchor of a meaningful participation in life (rogan et al. 2007). rogan and colleagues argue that a paid job would allow an individual to have financial resources to take care of family needs, pay for transport and membership at a social club or political and civic engagements which require finances. however, in most developing countries, zambia inclusive, the majority of pwd are unemployable due to lack of education opportunities perpetuated by poverty (eide & loeb 2006; filmer 2005; mitra, posarac & vick 2011; safod 2008). the work of eide and loeb (2006) on the living conditions of people with activity limitations in zambia indicated that there are higher percentages in the lower income categories for households with disabled members than households without a disabled member. their study also indicated that the earnings of most people with disabilities were from unstable income sources and thus indicative of non-formal employment. for example, in the western province there were significantly more households with a disabled family member who had no one employed (39%) compared to 32% amongst households without a disabled family member. a country profile on promoting the employability and employment of people with disabilities through effective legislation revealed that most disabled persons are not in employment because of inadequate education and training due to the inaccessible built environment and stigma (ilo 2006). these findings are consistent with the available data from the central statistical office in the 2000 national census, which revealed that 43.2% of the  256 690 people with disabilities (2.7% of the total population) had no education and only 1.3% had attained a high level of education (central statistical office 2000). in addition, the census also revealed that 69.2% of them were in self-employment compared to 15.6% in formal employment, and 14.7% were engaged as unpaid family workers. unfortunately, in zambia explicit figures to indicate definite employment rates of pwd in comparison to non-disabled populations are scarce. thus, for the majority of pwd, poverty continues to affect their capacity to educate their children and support their families, and thus their poverty continues in a vicious cycle (metts 2004; mitra et al. 2011). there are no known studies in zambia that have investigated the perspective of pwml regarding accessibility of public buildings and spaces to determine how their capacity to participate in a preferred lifestyle has been affected. two studies have attempted to include accessibility in their inquiry although, in both cases, accessibility was not their main focus. one was a qualitative study in lusaka of 24 women with disabilities who reported considerable physical barriers in accessing safe motherhood and reproductive health (rh) services (smith et al. 2004). the other was a cross-sectional study conducted in the nine provinces of zambia comparing the living conditions of 2885 households (individuals = 15 210) with a family member with a disability (n = 2898 pwd) and 2866 households (individuals = 12 979) without a family member with a disability (eide &loeb 2006). this study reported a mixed picture of access to different services, facilities and institutions. for example, less than 40% of pwd who needed banking and hotel services were actually able to access these services. the sample size in this study was large and comprehended all categories of impairments, including sight and hearing. this could have influenced the results, which showed that places of worship, schools, health care clinics and shops were accessible to the majority of those with a disability. additionally, the results indicated that 65% of pwd accessed public transport and 68% were able to access workplaces. these results could be misleading because of the heterogeneous nature of the sample. therefore, identifying the built environments that are important in the day-to-day life experiences of pwml for economic development (on pwml and their families) prioritised in this study could reflect more specific outcomes for this group. hence, this study focused specifically on experiences of accessibility of public buildings in zambia by pwml and their perception of how inaccessibility affects their participation in their preferred lifestyle. to fully understand how accessibility of the built environment affects participation of mobility device users, it is critical to identify which environmental features are important in influencing participation (banda-chalwe, nitz & de jonge 2012b). if participation is a lived experience, then mobility device users may not fully experience participation if they are not able to access life situations such as education, employment, shopping, church services or medical services that form part of this lived experience. thus, the phenomenological context of the lived experiences of exclusion from participation due to an inaccessible built environment directs the emphasis to the importance of removal of barriers to participation (patton 2002; un 2010a; un 1994). this conceptual understanding of disability, accessibility and participation is lacking in zambia, despite the zambian government’s ratification of the un crpd, which includes article 9 on accessibility (un convention 2006). however, positive action by government has been demonstrated by the enactment of the persons with disabilities act no. 6 of 2012, replacing the persons with disabilities act no. 17 of 1996 and reflecting the aspirations of the un convention for persons with disabilities. this article provides an insight into the participation experiences of pwml in the social, cultural and political areas of life. the article will also demonstrate how these life areas are affected by access barriers which may ultimately lead to them ceasing to participate in the community. purpose top ↑ this zambian study investigates the perspective of pwml regarding accessibility of public buildings and spaces and determines the importance that they place on accessing these areas followed by how their capacity to participate in a preferred lifestyle has been affected due to this inaccessibility. methods top ↑ study design a qualitative approach via focus groups and individual interview swas utilised to collect data based on the participants’ own experiences of accessibility (denzin & lincoln 2000). study locations data were obtained from participants living in five of the nine provinces of zambia. a stratified, purposive sampling method was utilised to select the five provinces, based on the statistics of pwd and the geographical locations. physical impairments recorded the highest percentage (38.8%) compared to other impairments (blind, partially sighted, deaf, hearing impairment, mental illness and intellectual impairment) in the 2000 national census of population. the provinces which recorded the highest percentages of people with physical impairment were selected and these were north-western (46.6%), southern (43.5%), eastern (40.3%), copperbelt (39.1%). however, as the capital city of zambia as well as the most populous district, lusaka city (district) in lusaka province was selected despite having the lowest percentage of pwd (33.8%). the other four provinces were excluded, based on the low percentage of people with physical impairment, namely central (38.0%), luapula (37.8%), northern (36.9%), and western (35.9%) (central statistical office 2003b). each of the selected provinces also had unique geographic and socio-economic characteristics; ndola is the capital city of the copperbelt mining province, whilst solwezi is the major rural mining town in the north-western province. livingstone is the tourist capital of the country, whilst chipata is predominantly a major agricultural rural town in the eastern province. the selection of five study locations was motivated by the fact that this was the first exploratory investigation on the impact of inaccessibility on the lives of people with mobility limitations. participants participants included pwml using a wheelchair or crutches for ambulation, aged between 17 and 55 years. participants were excluded if they were under 12 years (secondary school entry age) and over 55 years (national retirement age), if they presented with cognitive impairment or were unable to provide informed consent to participate. all participants provided informed consent prior to data collection. most participants understood english even though it was not their first language. however, interpretation of some content of the information sheet was provided by the research assistant for those who were unable to understand the document. confidentiality was ensured throughout the process of data collection, management, analysis and publication. the study sought to obtain 100 participants (20 from each identified province) via registers of associations for pwd and government-funded institutions providing services to people with disabilities, aiming for equal representation of gender, age and location. however, communication and transportation difficulties impacted on recruitment numbers in all locations outside lusaka, particularly chipata. participants could not be reached for confirmation of participation and some expressed lack of transport to travel to the interview venue chosen by the disabled peoples organisation (dpo) in that area. some participants reported their inability to participate due to problems with mobility devices which were either worn out or not repaired because of lack of resources. thus, participant numbers were augmented with more participants recruited in lusaka. the distribution of participants in the five locations was: lusaka 45, ndola 10, livingstone 6, solwezi 11, and chipata 3. a list of organisations and institutions where the participants were sourced is provided in appendix 1. the details of the recruitment approach used are described elsewhere (banda-chalwe et al. 2012b). it should be noted that only 25 individuals who participated in the earlier part of this study contributed data relating to this report. this accounts for the differences in participant numbers between the reports but it did not change the composition or the representativeness of the cohort. five provinces out of nine were utilised in this study to identify and establish any differences or confirm similarities in experience of barriers in a rural or urban setting, based on the type of buildings or other issues which could be predominant in the different locations. ethical considerations ethics approval was sought and obtained from the medical research ethics committee of the university of queensland and the biomedical research ethics committee of the university of zambia. data collection procedure after an initial trial conducted in lusaka to refine the procedure, data collection was undertaken in all five locations between march 2010 and september 2010 comprising ten focus group discussions and seven personal interviews. personal interviews were utilised to accommodate participants who were unable to attend focus groups due to work commitments and those who felt uncomfortable expressing their views and discussing personal experiences in the presence of other people, especially of the opposite gender. thus, some preferred to participate in the same gender focus groups whilst others felt it was an opportunity to learn how the other gender experienced barriers of inaccessibility and how it affected them. the data collection process was conducted by the first author with two research assistants who received one day’s training on how to conduct focus group discussions and the use of the nominal group technique. the focus groups and personal interviewees were given unique identifier codes. all focus group discussions and personal interviews were audio recorded in english. video and photo cameras were also utilised to capture data.prior to commencing, demographic data were gathered, including, age, gender, marital status, location, onset of impairment, nature of impairment, years with disability, education level, work, years in employment, support, mobility device and living arrangements. being guided by the research question, the following open-ended research questions guided the methodology in this study by asking participants: 1. is accessibility for participation by pwml really a problem in zambia? 2. which public buildings do you as pwml regard as important to be accessed? 3. what are the barriers in the built environment that affect your preferred lifestyle participation? 4. how do the barriers you have identified in the built environment affect your participation and your whole family? 5. what accessibility experiences have affected your participation in life areas such as education, training, employment and family responsibilities? focus groups the focus groups consisted of not more than 15 participants. each group was constructed according to age and gender to promote belonging and trust, although some groups preferred to be mixed. the questions were asked in the order above. nominal group technique the nominal group technique (ngt) was originally developed, applied and tested in the late 1960s in the united states of america (usa) by van de ven and delbecq (gallagher et al. 1993; sample 1984) to generate ideas which are then discussed and ranked by a group. the process in the current research comprised six steps. public buildings and spaces that were perceived as important to the participants’ day-to-day life experiences were identified. these were then ranked by the participants into three groups, universally identified as important (on a day-to-day basis), frequently identified as important, and least often identified as important. during the process, each participant was given an opportunity to explain to others in their own words (claxton, ritchie & zaichkowsky 1980) how that building was inaccessible. to satisfy the second part of this study, participants were also encouraged to explain how the inaccessibility of that particular building affected their lives and the whole family’s participation in the community. the process was repeated in a round-robin fashion, ensuring that all participants had an opportunity to identify all the buildings of importance and exhausted their lists. discussion was encouraged over the rankings accorded to the various public buildings and spaces to permit individuals’ evaluation and to gain consensus (gallagher et al. 1993). data analysis top ↑ simple descriptive statistics were used to analyse participants’ demographic data. participants were assigned identification numbers, which were applied to audio recorded data from the interviews and focus group discussions. firstly, recorded data were transcribed in full by the researcher and checked for accuracy and edited by the second and third authors. these transcriptions were entered into the data management program nvivo 10.0 (qsr international 2011) after each interview to store, organise and retrieve data. secondly, after all interviews were transcribed, codes were developed from emerging issues which represented content descriptors, categories, concepts and themes. the coding of data was conducted by the researcher and two assistants to identify common themes through triangulation of the findings. the codes were examined in order to identify related concepts and stem codes were formed to create a hierarchical structure of issues that had common themes (bazeley 2007). lastly, a constant comparative approach between descriptors, categories and concepts of the phenomena was used to obtain common themes. comparative analysis between focus groups in each location and between the five research locations was also conducted. comparison was conducted between each theme to identify similarities and differences in descriptions of categories and concepts (hammel et al. 2008). transcriptions of participants’ interviews from all the five provinces showed no disagreements when compared. the concept of deductive reasoning was utilised in data analysis (figure 1). deductive reasoning provides a means of understanding, organising phenomena and drawing conclusions from the data itself (portney & watkins 2009). in this case, the generalised inaccessibility experience of the built environment by pwml in western countries might not necessarily represent the experiences of pwml in developing countries (such as zambia) with different social, political and cultural backgrounds (marks 1999). thus, the deductive concept was useful in understanding inaccessibility experiences, organising the data and drawing conclusions on what these experiences mean to pwml in their lives. figure 1: deductive reasoning in relation to data collection using focus groups. the validity of the material reported was ensured through cross examination and comparison of data by the author and assistants to identify common descriptors, categories, concepts and themes between groups and across locations. validation of data was also conducted by the second and third authors. results top ↑ study participants seventy-five participants were recruited from the five locations in zambia. the mean age was 36 (sd = 8.7) and 60% were male. the average years with a mobility limitation was 28.3 (sd = 10.5) and a mean of 8.5 (sd = 7.3) years in employment. wheelchairs were used for mobility by 38.7% and 25.3% lived alone. only 28% were in full or part time employment, with 50% self-employed (table 1). table 1a: demographic characteristics of respondents (n = 75). table 1b: respondents average age, duration of impairment and employment (n = 75). ranking of public buildings identified as inaccessible participants from the 10 focus groups and 7 personal interviews identified public buildings which they needed to access and ranked them as described (table 2). even though a home is not a public place, pwml identified it as an important aspect of an individual’s life experiences which also needed to have accessible facilities. experiences of participation restrictions and impact themes describing participation restrictions and their impact were derived from the recounted experiences of inaccessibility of public buildings and spaces by participants by a process of cross examination and comparison (figure 2). figure 2: outcome of focus group responses using the reductive analysis process. participants identified a number of issues in the built environment, including barriers within society (figure 2). these are reported under three main sections: • the built environment, described under »»physical inaccessibility • perception of the inaccessibility situation by pwml, described under »»mobility limitation »»health and safety risks • coping with inaccessibility, described under »»attitudinal barriers and discrimination »»participation restriction leading to ceasing participation. however, experiences in each of these different sections interact with each other at various levels, as is evident in the transcribed data contained in this study. finally, a comparative analysis of the inaccessibility experiences between rural towns and urban cities indicated some differences and similarities. the built environment the built environment (public buildings and spaces) was described as a critical aspect of promoting and facilitating participation for pwml. the pursuit of participation opportunities is greatly hindered by barriers encountered in the physical environment (figure 3 – figure 6). figure 3: parked cars obstruct ramp access. barriers in the physical environment: accessibility to the built (physical) environment was described by participants as a right. people with mobility limitations have as much right as other citizens to access business places, facilities and seek services of their choice and experience socialisation. in the process of socialisation, experiences of personal comfort are preferable to struggles in overcoming obstacles and hindrances in the environment. according to the participants, socialisation contributes to an individual’s development, family and to society and this was lacking in their lives. the need for an accessible built environment – particularly public buildings including homes and houses, sidewalks, open spaces around buildings, roads and parks and transport services – was identified as critical to their participation in life. comparison of participants’ experiences of barriers encountered in the built environment in urban and rural areas indicated that more buildings in rural areas are at ground level than in urban areas, where many are built with more than one level. illustrations of these issues have been included in figure 3 to figure 6 to allow more understanding of the extent of the problems. examples from participants describing how they struggle to navigate and wheel their wheelchairs in outdoor areas follow: ‘these obstacles are found everywhere, open drainages along the roads, no designated tarred pathways and high pavements. mostly i do not go shopping or an outing to a restaurant, even church, i rarely attend.’ (male aged 46, unemployed but seeking employment) ‘it is too far to wheel myself to and from town on gravel rough pathways and it is also difficult to cross the roads because of high pavements. too much to think about, so i just stay at home!’ (male aged 45, self-employed) ‘[n]avigating and overcoming obstacles around the school … no paved pathways, uneven surfaces and open drainages i get frustrated and exhausted …’ (male aged 23, in grade 12) these statements illustrate that attempts are made to engage in activities such as attending school, visiting business places, shops, leisure and religious facilities, but that the obstacles encountered frustrate the desired efforts. participants reported different situations which restrict their participation, rendering them unable to fulfil their desired lifestyle. for example, participants wondered why an individual would park a car in front of a ramp, preventing use of the ramp to enable access to a building (figure 3): ‘you find a car parked in front of a ramp, how do you use it? it means the person who has parked the car has no disability! the use of the international symbol for accessibility is not widely known and utilised in our country. enforcement mechanisms to protect our right to access are also lacking.’ (male aged 46, full time employed) participants viewed blocking an accessibility enabler such as a ramp and disregarding signage indicated disrespect of the person for whom the facility was intended, disregard of the law and reflected ignorance and lack of understanding of the accessibility needs of pwml. as regards inaccessibility of the physical environment, participants also expressed the general lack of knowledge within the community about the international symbol for accessibility and that it was not widely known and used in zambia. they felt that lack of knowledge about the use of the international symbol for accessibility could significantly contribute to the general public not taking recognisance of its use and importance: ‘[n]o one seems to be serious about the international symbol for accessibility; few people know it exists, what it means and its importance …’ (male aged 50, self-employed) participants blamed government for not committing itself through dissemination of information about disability rights, developing policies and standards and enacting legislation, to initiate the removal of barriers in public buildings and spaces, homes or houses, and transportation services to protect the rights of pwml: ‘i use stairs when i am entering a building because i have no other choice. i crawl up while pulling the wheelchair along or i leave it downstairs and crawl up.’ (male aged 50, self-employed) crawling up and down the stairs of buildings (figure 4) was identified as an embarrassing experience. as one participant shared his experiences: figure 4: the indignity of crawling up stairs. ‘i crawl up and down stairs of buildings when i want to buy school requirements for my children and the shop where i can find what my children need is upstairs at a shopping complex. i feel embarrassed crawling and my children also feel embarrassed. my wife does not usually accompany me when i am with the children in the city, she feels embarrassed too. what is more critical is the risk that i get exposed to using my bare hands on the floor. sometimes i am forced to crawl up stairs when i want to attend an interview for a job. unfortunately, even with all that effort, i do not get the job because i am disabled. asking me how i would be managing going to the 4th floor crawling if i am offered the job is an insult to my integrity, dignity and respect!’ (female aged 42, unemployed but seeking employment) perception of inaccessibility mobility limitation: mobility was closely linked by participants to their right to social inclusion. mobility was expressed as being in pursuit of opportunities for survival, to experience life, and have control of one’s life choices. participants discussed their experiences of choice and control as lacking in the lives of most pwml in zambia, as society continues to regard disability as a personal tragedy without relating it to societal discriminatory practices and socio-cultural norms. mobility was also related to acquisition, use and repair of mobility devices in pursuit of participation and social inclusion. they stated that mobility devices allowed them to move to places of choice and engage in activities of choice, giving them control of what they wanted to do. without mobility devices, participation was restricted even within the home. participants viewed mobility as a matter of life or death. one participant summarised: ‘if you are able to move out and about, you are alive but if you are stationary in your home or bedroom because you cannot move out, then you are as well as dead! the wheelchair provides me with an opportunity to move out and socialise, explore opportunities with dignity and identifying myself as an individual with an impairment and proud the way i am.’ (female aged 45, unemployed but seeking employment) participants expressed determination to take responsibility for their lives and providing family support but that process could only be achieved if they were able to move and not depend on others to do things for them. however, some situations pose a threat to their health and risks are experienced as pwml are determined to pursue participation opportunities. health and safety risks: health and safety was discussed regarding health risks, safety and security when pursuing participation activities. examples related to health risks were outlined as inappropriate architecture (figure 5), narrow toilet doors, absence of grab rails in toilet rooms and pit latrines in public places. participants described the necessity to crawl into the toilet area owing to narrow doorways, the small cubicle space, and lack of privacy as they are unable to close the door. health risk experiences were identified as: figure 5: inaccessible toilet facility. ‘crawling into the toilet room leaving my wheelchair outside is a risk to my health but sometimes i use the inaccessible toilet facility available.’ (male aged 39, self-employed) ‘“do you really have to use this dirty toilet?” i am asked a lot of times.’ (male aged 21, unemployed but seeking employment) ‘i use public toilets without closing the door … the toilet doors and space inside are so small for the wheelchair, no privacy!’ (female aged 34, full-time employment) participants voiced disquiet about how society would expect pwml not to use inaccessible dirty toilets when there is no provision for accessible toilets. lack of rails to assist with transfers was seen as additional health risks: ‘because of having no rails in the toilet room, you have to hold onto the dirty toilet seat to transfer yourself’ (male aged 43, full-time employment). participants also indicated that pit latrines at many schools and churches were barriers to opportunities in these life areas. in addition to crawling into the toilet room, participants described that having to sit on a pit latrine poses a high health risk and may require being lifted by colleagues. participants described a feeling of embarrassment which may lead pwml to cease pursuing opportunities for participation in areas such as education, employment and religious activities. risks were also identified regarding safety issues arising from ramps that were too steep and that lacked rails (figure 6). participants described unsafe ramp facilities as creating restrictions for pwml to engage in activities of choice such as using banking facilities: figure 6: steep ramp without rails leading to an automated teller machine at a bank. ‘the ramp at the automatic teller machine is so steep, i fail to wheel myself on it and the bank entrance has stairs too. i have closed my bank account! steep and inappropriate ramps are found not only at bank facilities but even in some schools or churches’. (male aged 25, training at a college) participants related safety risks as contributing to fear of falling, which may result in ceasing interaction and relationships, education and employment. the feeling of insecurity on a steep ramp without rails for support increased the fear of falling. coping with inaccessibility experiences various situations were described as leading to feelings such as anger, frustration, desperation and insecurity. on the other hand, some participants developed motivation and determination to carry on and confront inaccessibility with the assistance of family members such as their children.attitudinal barriers and discrimination: attitudinal barriers were common in all five study locations. the attitude of bus conductors and drivers force pwml to abandon travelling. participants discussed experiences of discrimination based on their impairment and the mobility device they use. the majority of participants indicated that they abandoned school, work, civic and social life events such as cultural ceremonies or sports due to such experiences: ‘it’s how to get to town! minibus conductors refuse me to get on the bus because of my wheelchair. they say there is no place to put it and i waste time for them. they also charge me for my wheelchair.’ (female aged 40, unemployed but seeking employment) ‘minibus drivers leave us at the bus stop/stations because of our wheelchairs and crutches.’ (female aged 29, unemployed but seeking employment) in addition, participants felt that society had little or no regard for pwd, reflected in the lack of legislation and policies to protect their rights. they referred to the negative attitudes of society toward pwml leading to discriminatory practices such as denying the right to access opportunities for employment. these discriminatory tendencies could be described by such expressions and comments from participants: ‘when you go looking for a job, mostly you are denied entry to the premises by the security at the gate. in the offices, the negative attitudes of secretaries who will tell you that the interviews are not for persons with disabilities. they really make you feel you are nothing!’ (female aged 38, unemployed but seeking employment) ‘you cannot perform experiments in the laboratory. it is difficult for you because of your wheelchair.’ (male aged 21, in grade 12) ‘people don’t see me, they see my wheelchair and judge me because of that!’ (male aged 34, self-employed) participants also experienced people being outspoken about what they should and should not do with their lives, as reflected in the following comments that they recounted from health professionals: ‘“you know that you are disabled, why do you get pregnant?”’ (female aged 45, unemployed but seeking employment) ‘“disabled people should not have children, why are you pregnant? you shouldn’t even get married!”’ (female aged 36, in part-time employment) attitudinal barriers were related to inadequate support from family, society and government. participants told how families hide children with disabilities based on traditional beliefs in ancestral curses and cultural practices of consulting traditional healers. a medical-diagnostic perception of disability, for example, by most health professionals was blamed for the belief that a pwml should neither get married nor have children. health professionals were blamed for the diagnostic and labelling attitude which locates disability within humans and defines it as an anomalous medical condition of long term or permanent duration. even though some impairment may be long term, participants disliked being labelled and prescribed to by health professionals what they should and should not do due to the impairment. participants felt that negative comments build in them a sense of low self-esteem, loss of dignity, lack of autonomy of choice, loss of control of one’s life and an experience of inequality (figure 7). despite all the negative aspects of coping with inaccessibility, some participants stated that determination to achieve keeps them going: figure 7: model of factors that have contributed to ceasing participation by people with mobility limitation. ‘every day i am lifted up the stairs. it is so embarrassing to be lifted daily … at my work place. there is no ramp leading to where the lift is. i struggle, but i am determined to work’ (male aged 35, full-time employment). participation restriction–ceasing participation: participants emphasised that inaccessibility of the physical environment exposed them to health and safety risks, attitudinal barriers and discrimination, leading to restriction in participation. experiences of limited mobility were also expressed as leading to ceasing participation as a consequence of inter-related factors such as those identified under perception of inaccessibility (figure 2). they related participation as a right and experiences of restrictions denied them the right to participate in the lifestyle of their choice. participation restrictions were also framed as resulting from medical and cultural views of impairment and disability, leading to discriminatory attitudes and practices. the absence of legislation, policies and access standards were identified as a reflection of lack of political recognition on the part of government that perpetuated negative cultural practices from society. participants emphasised that participation was closely related to the right to social inclusion based on choice and control. in the absence of participation, restrictions pushed pwml into ceasing participation in most areas of life such as education, employment and relationships, leading to isolation, sense of loss and despair, and inability to support their families. at the stage of participation restriction, pwml discussed the sequence of events and experiences prior to ceasing participation. participants described factors which contribute to ceasing participation, including, (1) lack of autonomy of choice, (2) dependence on others, particularly children, (3) lack of control, (4) loss of dignity, respect and human values and (5) sense of inequality. ceasing participation was described as an outcome of the other factors listed above. the complex interaction of these observations regarding cessation of participation by pwml reflected experiences common amongst all participants (figure 7). lack of autonomy of choice: all participants acknowledged that inaccessibility had created negative attitudes in society which impacted on their autonomy of choice of lifestyle, dignity, privacy and preferences: ‘[n]ot much choice of science subjects because laboratories, including the library, are upstairs. no hope of achieving my dreams of becoming an electronic engineer. i know education is my only hope for economic survival …’ (male aged 18, in grade 11) ‘as for me, society chooses things for me because i cannot access opportunities of my choice on my own … i will always live the dream!’ (male aged 23, in grade 12) dependence on children: the use of children as helpers to overcome barriers and obstacles experienced in the built environment was identified as impacting negatively on the education of their children as they spend much of the time meeting their parents’ mobility needs instead of attending school: ‘i always ask my children to push me along on steep slopes or lift me up the stairs and down. my children cannot go to school … the government should make these public buildings accessible so that i can move on our [sic] own and my children can also go to school like other children and not be pushing my wheelchair.’ (male aged 50, unemployed but seeking employment) lack of control: little control of one’s own life connected to lack of choice for personal and economic advancement was another critical area identified by participants: ‘i rarely go to the bank. i send my colleagues, sometimes students, to withdraw or bank money for me.’ (male aged 45, in full-time employment) loss of dignity, respect and human values: the extent of the impact of negative attitudes of society towards pwd also greatly impacted on the respect, dignity and self-worth and the human values which determine society and how people are viewed and treated: ‘a disabled person has no dignity in life. people do not respect us. they do not think we are human beings.’ (p-group 1) ‘they look at you as if you don’t need god as they do! others want to show pity. i don’t like it. i have stopped going to church. wherever you go it is the same!’ (male aged 30, unemployed and seeking employment) sense of inequality: inequality in life situations related to personal economic advancement further affected their families and wider community, resulting in diminished self-worth due to the inability to contribute economically: ‘where is equality? discrimination is seen everywhere! for example, stairs tell you this place is not for you, you don’t belong here!’ (male aged 44, unemployed but seeking employment) ‘equality in this country is a dream which i can only imagine when i will be able to go anywhere i want to at any time like everybody else.’ (male aged 32, unemployed but seeking employment) ‘society regards us as nothing worth of anything good out of our lives, but more a burden.’ (group 6) ‘my employers have not provided a ramp for me at the building entrance to access the lift to my office on the fourth floor, yet before i joined the ministry, a ramp was provided for a senior officer. despite reporting that i needed a ramp to facilitate access to the location of the lift, the administration has not acted upon my request. i have been here over two years.’ (male aged 35, full-time employment) ceasing participation: ceasing participation altogether was reported as an outcome of the inaccessible built environment, attitudinal barriers and discriminatory tendencies from society: ‘i had to stop engineering because of the inaccessibility of the infrastructure around the university. i could not manage to access the labs, lecture theatres, library and other facilities … there are no ramps or lifts. also, some comments from people were unpleasant.’ (male aged 30, in full-time employment) ‘i stopped work because i could not cope being lifted up through the stairs everyday by male security guards. i used to feel embarrassed and humiliated!’ (female aged 41, self-employed) ‘i don’t go to town most often, because of difficulties in moving on gravel side-road foot paths, up high curbs and corridors along shop buildings, including banks. so i ask my wife to do things for me, even to buy clothes but i would also wish to go myself but …’ (male aged 40, unemployed but seeking employment) similarities and differences between urban and rural areas these results reflect common trends across the participants from the five provinces although some differences exist in the types of barriers and how these affected their participation. similarities in barriers in accessing the physical environment (such as the presence of stairs, inaccessible roads and transportation services) expressed common experiences in all the five locations (rural and urban). differences were indicated as rural areas having fewer upper storey buildings than urban areas, but more severe transport barriers were reported in rural areas due to rough and uneven terrain on undesignated walkways. barriers to transport due to negative attitudes of transporters were reported in all locations, but rural transport costs are higher than urban due to long distances between provincial rural towns and remote villages. although there are transport services to various locations within cities, people in rural towns walk to most destinations within town unless they use hired taxi, which is unaffordable. in urban cities, transport services are provided using minibuses, while rural towns have few minibuses and instead open vans are used to transport people. transporters in urban areas are more likely to charge for a wheelchair than in rural areas, even though there are longer distances to travel in rural areas. also, there was an indication that the negative attitude towards impairment in rural areas was associated more with cultural views than in urban areas, which showed both cultural and spiritual perspective of disability. scarcity of cheap, affordable but durable mobility aids is common in all locations. if available, they are donated mobility aids (especially wheelchairs) that are mostly unsuitable for the rough zambian terrain. whilst it is difficult to get a wheelchair suitable for individual needs amongst the donated ones, not every pwml even gets a chance to receive a wheelchair. participants expressed that donated wheelchairs are mostly in urban areas and rarely reach pwml in rural areas except occasionally through the church. participants in rural areas expressed that the wear and tear of mobility devices was faster due to the rough terrain compared to urban areas which negatively affected their desire to travel. discussion top ↑ the purpose of this study was to investigate the perspective of pwml regarding accessibility of public buildings and spaces and to determine how their capacity to participate in a preferred lifestyle had been affected. it was revealed that pwml in zambia experience accessibility problems related to the buildings as well as transport and public thoroughfares. inaccessibility affected their ability to make personal lifestyle decisions. mobility limitation, physical inaccessibility, health and safety risks and attitudinal barriers and discrimination have contributed to participation restrictions for pwml in zambia. factors such as lack of autonomy of choice; dependence on children for mobility; lack of control; loss of dignity and respect; and sense of inequality have forced many pwml to cease participation altogether. inaccessibility of public buildings resulting in limited choices has impacted negatively on the individual economic development and independence of pwml, hence their inability to contribute effectively to the national economy and their families. in addition to inaccessibility experiences, pwml expressed issues which pertain to personal factors, such as personal perceptions and mechanisms to cope with various external factors, which were not originally the focus of this paper. however, the issues highlighted above are pertinent to the way pwml perceive government’s response and involvement in their wellbeing and how they perceive themselves as overcoming these challenges. participants identified mostly government buildings (ministries and departments), public institutions such as police stations, post offices and civic buildings and public service providers such as education institutions (schools, colleges and universities), and shopping malls as being public buildings important to their daily life. despite experiencing mobility limitations, pwml expressed the desire to move out of the confines of home to explore the environment in pursuit of opportunities. mobility is described as fundamental to the liberty of the human body, and existence and a right to move freely and independently is critical in an individual’s life (imrie & hall 2001d). additionally, in this study, mobility was described as a means of survival and signifies life. inability to move from one place to another rendered an individual ‘a dead person’. movement was aided by the use of mobility devices such as wheelchairs or crutches, which are not readily available in zambia and, if available, are unaffordable (handeland, joelsdottir & brodtkorb 2008). for example, some potential participants were unable to attend focus group discussions due to having no mobility device for ambulation. some individuals reported having broken wheelchairs which were beyond repair whilst others were unable to repair their wheelchairs or crutches due to lack of financial resources. unlike zimbabwe and south africa, zambia has no government-aided wheelchair manufacturing company which can help cushion the cost of a wheelchair. the cost of crutches is equally high for a pwml who is not employed and has no regular income. crutches are made by community carpenters who charge any desired amount. other sources are faith-based services such as the cheshire homes society, which mainly provides assistance to children with disabilities within their residential cheshire homes through their own sources from the cross international catholic outreach (cross international 2009). the cheshire homes society receives no funding from government to supply these mobility devices to the general public. the cost of a wheelchair at disacare (disability care) wheelchair centre is about $300. disacare, established in 1991 through an initiative of zambians with disabilities, is the only local ngo aimed at producing durable wheelchairs which are locally built and repairable using locally available raw materials. however, it is not supported by government to cushion the cost (howard 2003). most pwd in zambia are unable to afford the cost of a wheelchair as most of them are unemployed or dependent on small incomes from self-employed activities (ramsey 2012). the inability to access appropriate and affordable mobility devices also forces pwml to abandon or delay seeking services such as health care (smith et al. 2004), education, training and employment (lawson 2007; hurst 1995). linked to mobility, the cost and scarcity of appropriate mobility devices, and inaccessible public buildings is the inaccessible transportation services previously reported in zambia (eide & loeb 2006; smith et al. 2004) and other countries (bennett, lee kirby & macdonald 2009; imrie & hall 2001d; metts 2004; venter, rickert & maunder 2003). despite the government’s acknowledgement of the importance of accessible transportation services, no strategies have been developed to address this need (ministry of communications and transport 2002). in zambia, transportation services are owned by the private sector, and lack of protective regulations to guide the conduct of transporters renders pwml most vulnerable and subject to abuse by bus drivers and conductors. participants expressed displeasure at government’s failure to protect their right to access transport, as pwml are being exploited by minibus drivers and conductors who charge for the wheelchair when they are travelling. deep concern was expressed that the right to mobility was denied to pwml in zambia due to the inaccessible physical environment and transport. in addition to inaccessible public transport and transportation services, expressions of despair exist amongst pwml in zambia regarding the inaccessibility of footpaths and walkways and having to move using their wheelchair and crutches over long distances to various destinations. in rural towns, lack of transport services within the town locations posed more hardships compared to urban cities where minibuses transported people to various locations. in rural towns, people have no option of minibuses, and instead have to walk or travel on wheelchairs to various destinations across the locations or hire a taxi which is unaffordable. as such, the durability of mobility devices was greatly reduced in rural towns compared to urban areas. safety concerns were regularly experienced when attempting to access and use public facilities due to obstructions, and poorly constructed elements in the built environment such as high curbs and steep ramps where available. accessibility issues such as high curbs and a lack of cut-out curbs on road crossings, and rough, uneven and undesignated pathways all posed safety risks. gravel pathways along roads and within institutional premises such as schools posed major obstacles to accessing services as the provision of paved pedestrian pathways was not part of general construction practice in zambia. open drains were also identified as barriers to progression encountered on footpaths. similar studies conducted in an urban area in canada (bennett et al. 2009) and a city centre in the uk (bromley et al. 2007) reported the importance of curb-ramps to facilitate easy and safe road crossing. in zambia, the absence of ramps or inappropriate ones force pwml to use children as assistants for safety to enable them to overcome obstacles. for example, steep ramps without rails render them functionally inadequate and unsafe and stop pwml visiting places of choice. the practice of using children denies them the opportunity to attend school and poses the risk of illiteracy and future poverty. from a feminist perspective, the rights of both the persons with disabilities and their children are being violated (morris 2001) in depriving these children of the right to education because of the caring role they assume. by not providing accessible environments, society projects an assumption that pwml are not as important as able bodied people (imrie & kumar 2010). the fact that children are providing this care, resulting in the interruption of education and their subsequent earning capacity, has not been hitherto recognised in zambia. equally, the consequences of children with mobility impairment leaving school because of inaccessible toilets will perpetuate poverty in adult life for them and their families. illiteracy has been reported elsewhere as indisputably linked to poverty amongst persons with disabilities (filmer 2005; hurst 1995; lawson 2007; metts 2004; trani & loeb 2010 ). however, until this study, the link between an inaccessible environment and illiteracy amongst pwml has not been identified in zambia. non-disabled people parking their cars at the end of a ramp, blocking wheelchair access to the building, have been experienced and pwml have been dismayed by this common practice in zambia. it may be attributed to general lack of knowledge about the needs of pwml by society, lack of accessibility standards and regulations and laws for enforcement. the united nations has advocated the use of the international symbol for accessibility to indicate accessible facilities and services to pwd (un 2004; un convention 2006). this practice has not been promoted and encouraged in zambia when disseminating information about the needs for pwd. barriers within buildings such as narrow doors leading to offices, high reception desks, narrow toilet doors and absence of rails in toilets made facilities in these places inaccessible. high reception facilities in public places such as banks and offices were experienced and this projected a negative perception of society towards wheelchair users (hurst 1995; imrie & kumar 2010), who would be disadvantaged because of height. more importantly, in zambia, narrow doorways leading to offices or toilet rooms give pwml no option but to crawl into the rooms to use the services. one implication of this is the health risk that the individual is exposed to, which forces pwml to abandon visiting these places altogether. public knowledge about the need to have accessible toilet facilities was universally expressed as obviously lacking. the lack of knowledge is evident from public reactions when they see an individual with mobility limitations crawling in mostly dirty public toilets. approaching a solution for better toilet access suitable for pwml through the ministry of health under disease prevention might facilitate change since it appears that utilising the perspective of equity of access has not been understood. inaccessibility to education and training institutions and employment premises is likely to contribute amongst other factors to the low levels of pwml enrolled in the education system. for example, the living conditions survey reported that disabled children are three times (23.9% of 2885 pwd households with a disabled member) more likely to drop out of school than their non-disabled peers (8.8% of 2866 households without a disabled member) (eide & loeb 2006). these results are consistent with the 2004 ministry of science, technology and vocational training enrolment in tertiary education system, which recorded only 3% (973/32 841) pwd, comprising 56 who were deaf, 169 with mental impairment, 693 with physical impairment and 55 with visual impairment (mstvt 2005). the study also indicated that unemployment in zambia was high and the difference between those with and without disabilities appears to be large, with a significantly higher proportion of people with disabilities (54.5%) not working than amongst people without disabilities (42.0%). these statistics indicate that pwd are disadvantaged from education to employment and hence their living conditions would not be expected to be at the same level as non-disabled individuals. inaccessible education and employment environments have been identified elsewhere as contributing to unemployment of pwd (barnartt 1992; braithwaite & mont 2009; chima 2005; hurst 1995; hammel et al. 2008; lawson 2007). amongst those participants who had managed to gain education, few were employed. most had been forced into self-employment because inaccessible offices and work environments made formal employment impossible to attain. the inability of an employer or even government ministries to include the provision of an appropriate ramp at the entrance has forced pwml to abandon seeking employment, cease work or resort to self-employment. this situation as well as inaccessible automatic teller machines and banks has interfered with personal control of finances that are necessary components for life participation but denied to pwml in zambia. the impact due to lack of financial autonomy on participation by pwml has not been reported previously in the literature in zambia. accessibility to premises, facilities and services was described as a right by pwml. therefore, inaccessibility of the physical environment is a violation of that right. swain and french (2008) observe that exclusion is the denial of rights and responsibilities of an individual expressed in oppression which shapes the personal and collective experiences and expectations of pwd. further, it is argued that barriers to participation are the socially constructed oppression through which pwd have to continuously negotiate to gain their rights of access to participation (swain & french 2008). the un convention on the rights of persons with disabilities (uncrpd) mandates nations to take appropriate measures to identify and eliminate obstacles and barriers to accessibility and ensure that pwd participate fully in all aspects of life (un convention 2006) but this has not been embraced by the zambian government. according to the uncrpd, it is government’s responsibility to develop all-inclusive policies and regulations to promote accessible public environments. however, stereotypical and negative attitudes towards pwml pervade government departments. despite government’s appointment of disability focal point persons (dfpp), negative attitudes have not improved as dissemination of positive information about pwd is lacking as the dfpp have not been trained in disability. due to their lack of knowledge of disability issues, dfpp have not adequately disseminated information to educate colleagues in government about the needs of pwd, particularly the need for accessibility of the built environment. professionals such as architects, engineers, lawyers, planners, occupational health officers and physiotherapists (useh, moyo & munyonga 2001), who are viewed as experts on the accessibility needs for all (church & marston 2003; evcil 2009), also have a responsibility to promote accessibility. architectural design problems were identified here in various areas of the built environment: roads, bus stations, office buildings, churches, sports clubs, shops, banks, educational and health institutions, where the needs of pwml were not met. architectural considerations in the design of buildings have been identified elsewhere as one critical factor in ensuring accessible public buildings for the participation of pwml within the community (barnes 1991b; bromley et al. 2007; hurst 1995; imrie & hall 2001c; imrie & hall 2001e). participation was expressed as an outcome of an accessible built environment which benefits the individual, family and society through collective efforts from government, society, professionals and pwd themselves. it was felt that government had not adequately explored the accessibility needs of pwml to promote participation in zambia. stereotypical attitudes of pre-judging an individual with a disability regardless of academic qualifications and skills, the perception by potential employers that a person with a disability could not be productive or attend an interview were prejudices which had contributed to pwml in zambia not gaining or seeking employment. an example of a participant working for government, denied the provision of a ramp when previously a ramp was provided to a senior government official is a clear indication of government’s failure to take serious action on accessibility. the absence of a system of reporting such violations of disability rights is another failure by government. by allowing a disabled person to be lifted by security guards instead of providing a ramp at the entrance leading to the location of a lift demonstrates how government views pwd. the desire to be seen as human beings and not the disability or the wheelchair or crutches exists amongst pwml in zambia and, such prejudices may imply that it is the impairment which defines and determines the life chances of an individual (bromley et al. 2007; morris 2001). to overcome negative attitudes and prejudiced practices from society, most pwml have developed self-determination as the force which has been motivating them to engage in some participation opportunities despite numerous barriers, as has been reported elsewhere (hammel et al. 2008; gray et al. 2008; wee & paterson 2009). for example, being told not to get pregnant because of the disability was a clear reflection of how pwml are viewed in zambia (smith et al. 2004). the negative attitudes are also reflected in the government’s inability to take a leadership role in identifying the needs of pwml or to institute measures to ensure the provision of an accessible built environment as acknowledged by government (ministry of communications and transport 2002). this situation, if left unchanged, will continue to perpetuate the marginalisation of pwml in zambia – a sentiment that has been reported elsewhere (hurst 1995; lawson 2007; peat 1997; venter et al. 2003; wee & paterson 2009). going about ones’ own life, doing what one chooses to do, where one wants to go and doing what one wants to do within the environment depends on an accessible built environment (hammel et al. 2006; imrie & kumar 2010). this was lacking in experiences of pwml in zambia. much as the attitude of society is critical in initiating change regarding disability concerns, the attitude of pwd toward themselves is equally important. there are several disabled peoples’ organisations (dpos) in zambia, but their strength is limited and fragmented due to disunity and limited capacity to lobby government to initiate change (badley 2008; handeland et al. 2008; zafod 2009). the dpos in zambia can learn from similar organisations in other countries – activists such as the union of the physically impaired against segregation (upias) and the liberation network, and sisters against disability (sad) in the uk, which were formed to offer powerful mutual support, education and to campaign against discrimination and the oppression of pwd (barnes & mercer 2006). in a similar manner, the disabled action in new york, usa, was formed in the 1970s, which was also a disability movement with the purpose of engaging in political campaigns and which made a great impact on society towards self-organisation (barnes & mercer 2006). from this study, there was an indication that even though pwml in zambia may know about some of their rights, the capacity to lobby government and society to provide protection of those rights remains with a few educated individuals, some of whom are employed by government and find it difficult to speak against their employers. participants expressed disappointment at some educated colleagues who are in strategic positions in government ministries but have not shown any indication of advancing the plight of the majority of pwd in the country. however, with the evidence from this study, the dpos in zambia could learn from the activities of similar organisations in other countries as disability rights advocacy groups engaging in vigorous campaigns to initiate change of policies on accessibility. study limitations and future research a limitation of this study is the size of the sample, which translates to 0.08% out of  104 912 persons with physical impairment recorded in the 2000 zambia national census (central statistical office 2003a). however, owing to the lack of accurate data regarding pwml, a comparative data consideration of 0.08% in a similar study in the usa that utilised 25 individuals in one location out of a total population of 6.8 million pwml (stark et al. 2007) could justify the sample size, which was supported by the purposive recruitment utilised in this study. the method of recruitment posed a limitation regarding, for example, more participants being in full-time employment (24.0%) compared to those unemployed but seeking employment (12.0%). this could mean that only those who were able to pay for transport to the interview venue managed to attend the focus groups. these results could also indicate that the individuals who possessed communication devices and were reached by the dpos during the recruitment process were able to come to the focus groups, and excluded potential participants who had no means of communication. the commonality of the experiences of all participants in this study, regardless of their location, suggests that pwml are universally disadvantaged in zambia by inaccessible environments and negative attitudes. this study has highlighted a need to establish the extent to which the inaccessible built environment has affected participation in society by pwml. there is a need to quantify the impact of inaccessibility on their life areas and preferred lifestyle to support the claims reported in this study. also a comparison between public buildings and spaces in rural and urban areas would be essential to establish any differences in the types of buildings and barriers encountered. such a study is recommended to strengthen this qualitative evidence of inaccessibility of the public buildings and spaces in zambia. in addition, future research could focus on a quantitative representative sample on employment and accessibility situation across zambia. similar collaborative studies could be conducted in african countries to compare accessibility situations in those nations and establish the magnitude of the problem, as evidence to advance rigorous advocacy across african governments and to political and economic groupings such as the common market for eastern and sothern africa (comesa), southern african development community (sadc) and economic community of west african states (ecowas). the impact of accessibility in enhancing the achievement of the millennium development goals could also be investigated to establish the level of contribution of pwd participating or not participating in socio-economic development in various countries. conclusion top ↑ this study has shown that pwml experience considerable challenges in pursuing opportunities for participation in zambia. some of the reported implications from the inaccessible built environment were anger, desperation, dependency, inadequacy, loss of dignity and respect, lack of control of own life, limited choices and inequality in social and family roles, and responsibility. whilst some of these experiences by pwd have also been reported by the united nations (un 2010b) and other studies (bromley et al. 2007; chima 2005; hammel et al. 2008; gray et al. 2008; stark et al. 2007; wee & paterson 2009), this study highlights the dire situation of pwml in zambia. the acknowledgement by pwml of the country’s limited resources in meeting all the needs of its citizenry was a positive aspect of their high expectation of the government’s role in including accessibility as part of the national agenda and development. the government’s failure in meeting these expectations was expressed in anger, displeasure and desperation. government is encouraged to take responsibility in meeting the needs of pwml by providing an accessible built environment and initiating measures to ensure equality for all (un convention 2006; un 2010b; imrie & hall 2001b; lutz & bowers 2005). drawing from the experiences of inaccessible public buildings by pwml reported in this study, lessons also could be learnt from other countries regarding strategies to improve accessibility and promote participation (imrie & hall 2001a; un 2010a), and this also calls for considerations in systems planning and development (banda-chalwe, nitz & de jonge 2012a). acknowledgements top ↑ the authors would like to acknowledge the research assistants mwiya muya and jenala phiri for their assistance in the data collection exercise. we would also like to thank all individuals with mobility limitations for their participation in providing data and their precious time. the authors are grateful for the financial and material resources from the school of health and rehabilitation sciences, the university of queensland to enable the successful completion of this study. we are equally thankful to the school of medicine, the university of zambia for their material support during data collection in zambia. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions m.b-c. (university of queensland) was responsible for contributing the study design, reviewing the literature, collecting data, analysing the data, and writing and editing the manuscript. j.c.n. (university of queensland) and d.d.j. 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association for women with disabilities (znadwo) in lusaka • zambia paralympics committee in lusaka • zambia national association for the physically handicapped (znaph) wheelchair centre, ndola • discare zambia, lusaka • livingstone network of persons with disability organisation • people living with disabilities support group, chipata • holland disabled association, solwezi • disability youth group, lusaka. abstract introduction key findings lessons learned and limitations conclusion acknowledgements references about the author(s) lucy k. norris programme development department, motivation charitable trust, united kingdom citation norris, l.k., 2017, ‘motivation peer training – bridging the gap for people with mobility disabilities’, african journal of disability 6(0), a350. https://doi.org/10.4102/ajod.v6i0.350 original research motivation peer training – bridging the gap for people with mobility disabilities lucy k. norris received: 17 nov. 2016; accepted: 20 mar. 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: only 2% of people with disabilities in developing countries have access to basic services and rehabilitation. objectives: to bridge this gap, motivation has been running peer training activities since 1993 and has identified that there is a growing need for peer training. the overall aim of peer training is for wheelchair users (peer trainers) to provide others (with similar disabilities) with the relevant knowledge on health issues, rights and skills to achieve a basic level of independence and greater quality of life. method: to test the impact of peer training, motivation created a knowledge, skills and well-being questionnaire, which has been trialled in two locations: kenya and malawi. results: overall, motivation found that most participants reported an increase in knowledge, skills and well-being, supporting their experience that this training provides vital information and support mechanisms for wheelchair users in lowand middle-income countries. further work is needed to ensure this tool measures the impact of peer training and lessons learnt have been identified to strengthen the methodology. conclusion: although peer training is not a replacement for rehabilitation services, motivation believes it is an effective way to not only increase knowledge and skills of persons with disabilities but also reduce the sense of social isolation that can often be a result of disability. introduction only 2% of people with disabilities in developing countries have access to basic services and rehabilitation (despouy 1993). to bridge this gap, motivation has been running peer training activities since 1993 and has identified that there is a growing need for peer training. the overall aim of peer training is for wheelchair users (peer trainers) to provide others (with similar disabilities) with the relevant knowledge on health issues, rights and skills to achieve a basic level of independence and greater quality of life. to test the impact of peer training, motivation created a knowledge, skills and well-being questionnaire, which has been trialled in two locations: kenya and malawi. overall, motivation found that most participants reported an increase in knowledge, skills and well-being, supporting their experience that this training provides vital information and support mechanisms for wheelchair users in lowand middle-income countries. further work is needed to ensure this tool measures the impact of peer training and lessons learnt have been identified to strengthen the methodology. background: what is peer training? in this context, peer training refers to wheelchair users training other wheelchair users with similar mobility disabilities in skills and knowledge that will enable them to carry out everyday activities and achieve an improved quality of life. the history of motivations’ peer training work twenty-five years ago, motivation’s co-founders realised that simply prescribing a wheelchair for someone was not enough to enable independence and increase quality of life. motivation found that there was very limited knowledge about the specific needs of people with disabilities, especially people with spinal cord injury (sci). this is suggested by the fact that survival rates remain poor for people with sci. in lowand middle-income countries, survival rates can be as low as 1–2 years after injury (gosselin & coppotelli 2005:330–332). this can often be as a result of fatal infections from untreated pressure ulcers because of the absence of adequate medical care (gosselin & coppotelli 2005). in addition, there is often a social stigma associated with disability which results in marginalisation and isolation (turk 2009:425–429). this can have a negative psychological impact. for example, 20% – 30% of people with sci show clinically significant symptoms of depression, substantially higher than the general population (post & van leeuwen 2012:382–389). in response to this, motivation has delivered a range of peer training activities including one-to-one hospital and home visit sessions and five-day training courses. initially, peer training started out as informal support (i.e. another wheelchair user sharing their experiences). however, recognising that there was a huge gap in rehabilitation for people with disabilities, motivation decided that a more formal approach was required to reach more people and ensure that good quality training could be delivered consistently in a range of countries. in 2006, a workshop was held in tanzania to develop motivation’s first peer training package. experienced wheelchair users from kenya, zimbabwe, south africa, uganda, tanzania and zambia were invited to review and modify the existing peer resources. the package included a trainer’s guide, posters and handouts focusing on three key areas: disability awareness (e.g. knowledge on sci and other disabilities, approach to assistants, rights, sexuality and relationships), health (e.g. bladder, bowel and skin care) and mobility (e.g. wheelchair skills, transfers and sports). the package was not targeted at replacing medical professional support, but was created to supplement the support persons with disabilities had already received. to date, 11 500 wheelchair users have participated in motivation peer training (mpt) activities in 22 countries. in addition to the peer training package, a training of trainer’s package was also created to support the development of local peer trainers to cascade training. so far, over 100 people have been trained as peer trainers, aiming to meet the growing need for peer training work. scope the updated package in 2016, motivation updated the peer training package based on feedback from trainers and trainees in the field through e-mail correspondence and via skype. the revised mpt package now includes a new participant handbook as well as additional wheelchair skills and sessions on hiv and aids and appropriate wheelchairs. participants in mpt identified that there needed to be basic information available on the topic of hiv and aids but also on the link with disability. this is because people with disabilities are more vulnerable and are frequently forgotten in hiv initiatives. they may be turned away from hiv education forums because of assumptions that they are not sexually active, or do not engage in other risk behaviours (groce 2004: 1663–1664). there are also physical access barriers for wheelchair users (opolot 2005). people with disabilities may also feel less empowered to negotiate for safer sex and a large percentage of people with disabilities will experience sexual assault or abuse during their lifetime (american academy of pediatrics 2007:1018–1025), which means that people with disabilities are at a greater risk of exposure to hiv. with this revised package, motivation hopes to reach more people with disabilities who have limited access to rehabilitation services as it is easier to use and can be accessed upon request. monitoring the impact of peer training as part of ongoing monitoring and evaluation systems and to meet donor requirements, motivation’s uk programme officer and africa peer training coordinator developed the knowledge, skills and well-being questionnaire to measure the impact of peer training on individual’s lives. so far, the questionnaire has been trialled in two locations: kenya and malawi. ethical considerations motivation is a nongovernmental organisation (ngo), not an academic institution. information gathered was not intended for academic publication but for organisational learning and was therefore not submitted for ethical review. however, informed consent to share anonymised information was sought from all participants involved in the peer training in accordance with motivation’s data and child and vulnerable adult protection policies. key findings in 2014 and 2015, four mpt courses were run in malawi, with 13 women and 17 men using the original trial questionnaire – participants either had a sci or cerebral palsy. in kenya, the questionnaires were tested during two mpt courses (held in 2016), with 11 women and 12 men – all had sci, except one person who had spina bifida. two different versions of the questionnaire were used in kenya. in the first mpt course, a trial version was used, which was updated based on feedback from trainers and trainees; the updated version was then used in the second mpt course. in both locations, a baseline and an ‘after training’ questionnaire were carried out to analyse the impact of the training (i.e. using average score differentials). the questionnaire was divided into three sections: knowledge, skills and well-being. the knowledge section looked at three areas: health (e.g. ‘do you understand the main causes of your disability?’, ‘do you feel confident in how to care for yourself?’), hiv and aids (e.g. ‘do you know where to receive information, advice and medical treatment on hiv or aids?’) and disability rights (e.g. ‘do you understand your rights as a person with a disability?’). for this section, it was found that average scores improved from the respondents’ baseline in both kenya and malawi, suggesting an improvement in knowledge across all areas. in kenya, the highest average score increase was for understanding rights; participants listed rights to education, access to public facilities and relationships as a key learning. in contrast, in malawi, the highest average score change was seen in confidence in caring for themselves. the mobility skills section of the questionnaire focused on transfers and wheelchair skills such as pushing (e.g. forward/backward/turning), how to get over obstacles and wheelies. in kenya and malawi, average score differentials show improvements, specifically in pushing in the community over rough ground. however, other scores such as pushing forward showed little or no change. in addition to the quantitative scoring, qualitative comments demonstrated a change – after the training one participant highlighted ‘wheelchair skills such as obstacles and slopes are valuable – i can now get about more independently’. the section on well-being looked at a range of factors. in kenya, average scores improved in most areas, apart from feeling hopeless, which remained the same. more score improvements were seen in malawi. the well-being questions on social functioning showed a positive average score change in both kenya and malawi. for example, most people suggested they felt less isolated after peer training. one of the greatest score improvements was related to people’s perspective on access to recreational activities, as confirmed by comments such as: ‘i feel able to do games and sport.’ (francis, male, 35 years) in addition, perceived ability to access religious, political or cultural activities improved; this is substantiated by one person stating: ‘i was scared to go out [before the training]; now i feel confident.’ (mercy, female, 30 years) in malawi, one person stated the training improved her social life, establishing new friendships and invitations to social events (lewins 2016). some of the well-being questions on access to school or work were not applicable to participants. however, those who responded showed an improved average score on whether they felt they could access education or employment. this improvement was supported by the qualitative feedback collected, with one participant stating after the training: ‘i will now attend a school for disability.’ (marina, female, 23 years) in malawi, the external evaluator for this project stated there are successful stories of participants returning to school or some form of education after attending motivation’s peer training (lewins 2016). one woman stated she was previously unable to live independently but after the training she can go to work and support her family independently (lewins 2016). additional examples of people setting up their own businesses were also identified. lessons learned and limitations at present, the data from the questionnaires are limited because of small sample sizes, modifications, missing data and lack of reliability. it is important to note that although this questionnaire drew on the experience of other validated tests (such as the wheelchair skills test, dalhousie university 2015), the knowledge, skills and well-being questionnaire was developed for motivation’s internal use as part of monitoring and evaluation and tailored to meet the needs of users in developing countries. motivation has identified areas that may contribute to difficulty in gathering data. for example, peer training residential courses are very time sensitive as there are a lot of sessions to cover during a five-day course. questionnaires can therefore only be carried out when participants arrive and some may need to depart early. motivation has now changed the questionnaire to be carried out at the end of training. it asks participants to think back to before the training and after the training. although this approach is not ideal, it should ensure all data are collected and give a general idea of participants’ knowledge, skills and well-being before and after the training. it must also be recognised that the baseline questionnaire is usually carried out the day before training. participants may only just have met the peer trainer and may not feel comfortable answering questions. in addition, they may feel that they have to give inaccurate responses to please the interviewer. for example, in the kenya baseline, some participants stated that they felt they had ‘no difficulty’ with some of the wheelchair skills (despite peer trainers identifying that not all participants were able to perform some of the skills) – this meant that for some respondents no score change was seen. this demonstrates another flaw in the questionnaire, as participants may feel they are able to do a skill (or try to impress the peer trainer), when in fact they may not have been taught to carry it out effectively. conclusion motivation’s findings show that, for this sample, there was a positive increase in some domains for people with mobility disabilities. however, the methodology for demonstrating this impact needs further work, based on lessons learned. it has also been established that while quantifiable evidence is valuable to demonstrate impact of peer training, equal value should be placed on qualitative information as this is likely to provide a richer picture of the impact of peer training. a participant from kenya demonstrates this: ‘overall, peer training has improved my quality of life. i am happy now. i will now be able to give back to the community … knowledge is power.’ (jane, female, 27 years) although peer training is not a replacement for rehabilitation services, motivation believes it is an effective way to not only increase knowledge and skills of persons with disabilities but also reduce the sense of social isolation that can often be a result of disability. motivation will continue to deliver mpt courses to ensure that the needs of people with disabilities are met. acknowledgements the author would like to thank the following people: astrid jenkinson, tamsin langford and sarah frost (motivation uk); charles kanyi, nancy mbuguah and peter kiragu (motivation kenya); faustina urassa and abdullah munish (motivation tanzania); fredrick semakula (motivation uganda); annie yassin, bartholomew maida, billy chilumbuto, berner kaliko, scader louis, chauncy namalawa, esther chavula, christopher tathera and margaret zagwazatha (spinal injury association of malawi); and harry makumbe (peer trainer, malawi). competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. references american academy of pediatrics, 2007, assessment of maltreatment of children with disabilities, pediatrics 119(5), 1018–1025. https://doi.org/10.1542/peds.2007-0565 dalhousie university, 2015, wheelchair skills test 4.3 form for manual wheelchairs operated by their users, halifax, nova. despouy, l., 1993, human rights and disabled persons, study series 6, centre for human rights, geneva. gosselin, r.a. & coppotelli c., 2005, ‘a follow-up study of patients with spinal cord injury in sierra leone’, international orthopaedics 29, 330–332. https://doi.org/10.1007/s00264-005-0665-3 groce, n.e. & trasi, r., 2004, rape of individuals with disability: aids and the folk belief of virgin cleansing, the lancet 363, 1663–1664. https://doi.org/10.1016/s0140-6736(04)16288-0 lewins, r., 2016, final evaluation on ‘increasing survival and reducing poverty of disabled children and adults in malawi’ project. report unpublished. opolot, s.j., 2005, challenges faced by people with disabilities in utilizing hiv/aids communication and related health services in uganda, action on disability and development (add), kampala, uganda. post, m.w.m. & van leeuwen, c.m.c., 2012, ‘psychosocial issues in spinal cord injury: a review’, spinal cord 50, 382–389. https://doi.org/10.1038/sc.2011.182 turk, m.a., 2009, ‘health, mortality and wellness issues in adults with cerebral palsy’, developmental medicine and child neurology 51: suppl, 424–29. https://doi.org/10.1111/j.1469-8749.2009.03429.x pmid: 19740207 abstract introduction research methods and design results discussion recommendations conclusion acknowledgements references about the author(s) gsakani o. sumbane school of medicine, faculty of health sciences, university of limpopo, polokwane, south africa citation sumbane, g.o., 2024, ‘coping strategies adopted by caregivers of children with autism in the limpopo province, south africa’, african journal of disability 13(0), a1384. https://doi.org/10.4102/ajod.v13i0.1384 original research coping strategies adopted by caregivers of children with autism in the limpopo province, south africa gsakani o. sumbane received: 25 nov. 2023; accepted: 04 july 2024; published: 30 sept. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: emotionand problem-focused coping strategies are frequently employed by caregivers of autistic children to increase their general well-being and resilience to the stress of raising the child. although these strategies cannot directly address the situation, it is useful for handling stressful situations that cannot change. objectives: the study seeks to explore and understand the emotionand problem-focused strategies that caregivers use to cope with the challenges of raising a child with autism. method: this was a qualitative, exploratory and descriptive research study. twenty-eight caregivers were purposive-convenient sampled from the public special schools where their autism spectrum disorder (asd) children are schooling. semi-structured interviews were used to gather data, which were then transcribed and subjected to thematic analysis. results: positive emotion-focused strategies include positive reappraisal, reframing and acceptance. negative emotion-focused strategies include denial, emotional release, cognitive distortion, self-isolation, overprotection, negative self-talk, punishment and religion. problem-focused coping strategies include active and adaptive coping, peer group, professional support and social support. conclusion: the coping methods that have been identified can be integrated into intervention programmes and serve as a guide for specialised institutions that offer more extensive knowledge and assistance to families who are caring for children with asd. contribution: the study contributes to understanding the emotionand problem-focused strategies adopted by rural caregivers in managing their emotions, interpretation of the situation and adjusting to the demands of raising an autistic child. keywords: autism spectrum disorders; caregivers; emotion-focused coping; problem-focused coping; strategies. introduction caregivers of children with autism spectrum disorder (asd) experienced elevated levels of stress and frequent physical and mental burnout (harris 2021). the asd literature shows that caregivers’ stress is influenced by the child’s behavioural problems and deficits in socialisation and communication (amireh 2019). caregivers of children with autism take on excessive responsibilities such as meeting social, physical, emotional and learning needs of a child (marsack-topolewski & wilson 2021), and this situation causes stress, despair and anxiety (ishtiaq, mumtaz & saqulain 2020). to deal with stress, caregivers of children with asd use coping strategies that help to tackle the challenging situations of raising the child (ismail mohd et al. 2022; megreya et al. 2020). two dimensions of coping strategies mostly used include problem-focused coping, and the purpose is to solve the problem or take action to change the status quo (ghanouni & hood 2021). the other one is an emotion-focused coping, which aims to reduce the emotional distress associated with stressful situations (vernhet et al. 2019). the literature showed that female caregivers, like mothers of the asd children, used emotion-focused coping more than fathers (haytham et al. 2022). the most commonly used strategies include crying, spiritual behaviours and acceptance, which are reported to be the most crucial elements of female caregivers coping strategies (balubaid & sahab 2017; wei-chih, chang & kuo-yu 2023). however, the emotion-focused strategy such as denial, avoidance and social withdrawal have generally been found to be associated with higher levels of psychological distress on the caregivers (manicacci et al. 2019; salimi et al. 2019). using problem-focused coping strategies, such as seeking information, seeking social support, seeking professional help and taking action to address the problem, has been linked to better mental health outcomes (harris 2021; ishtiaq et al. 2020). according to haytham et al. (2022), positive coping strategies increase the likelihood of smoother interactions between asd children and their caregivers, as well as increased acceptance and less rejection from society. caregivers of children with asd, however, differ in how they cope with perceived stressors based on a variety of factors (gagat-matuła 2022; vanmeter, handley & cicchetti 2020), including the circumstance or threat being faced, personality traits, positive beliefs, culture, social support networks, problem-solving skills and religion (pisula & banasiak 2020; yaacob et al. 2022). on the other hand, it has also been proposed that having an asd child may impact the quality of life for the caregiver in addition to being associated with emotional stress and several social, physical and financial factors (wei-chih et al. 2023). the study was guided by lazarus and folkman’s transactional model of stress and coping. the framework illustrates how major life events affect human emotions and help people cope with stressful situations by using cognitive appraisal and coping strategies (obbarius et al. 2021). the focus of the theory lies on cognitive assessment and dealing with stress and coping. the three major concepts of the model include stress, appraisal and coping (lim et al. 2023) as illustrated in figure 1. according to the transactional model, people experience stress when the demands of a situation exceed their capacity to deal with it (furrukh & anjum 2020). the amount of stress people experience is based on their assessment of two factors: the assessment of the stressors (called primary appraisal) and the assessment of the resources they must cope with (called secondary appraisal) (bhattacharya et al. 2019). the model has identified two general coping strategies (loewenstein, barroso & phillips 2019): one is a problem-focused coping, the purpose is to solve the problem or take action to change the status quo; the other is an emotion-focused coping, which aims to reduce the emotional distress associated with stressful situations. when effective coping strategies are adopted, the individual will overcome, adjust and learn from the stressful situation (lim et al. 2023). however, the ineffective coping strategies will affect the adjustment to the situation and the situation will be perceived as a threat or dangerous (rosli et al. 2020). caregivers of children with asd are faced with a major life event of raising a child with asd which might affect their emotions or adjustment. the framework will guide on the assessment of the coping strategies adopted in managing the emotional distress associated with raising a child with asd. figure 1 summaries the main concepts of the theory. figure 1: transactional model of stress and coping. to date, most of the studies that have targeted caregivers of children with asd were conducted in western or developed eastern countries (reddy, fewster & gurayah 2019). no studies have investigated the coping strategies of caregivers providing care to children with asd in the limpopo province. different cultural ideas held by caregivers in the limpopo province have influenced how they interpret asd and make decisions (numisi et al. 2020). it is noted in the article written by mojela (2020) and sumbane et al. (2023) that the lack of resources associated with asd, a higher level of stigma in society and inadequate knowledge could result in psychosocial stress to parents and caregivers. the lack of local literature and data about coping strategies makes this study essential. it might serve as a strong foundation for upcoming studies. research methods and design research design an exploratory and descriptive research methodology was employed to better understand how caregivers of asd children coped with the stressful aspects of their child by collecting data directly from the caregivers themselves. therefore, the researcher described participants’ spoken and written words and interpretation of observed behaviour in a way the participants explained them during data collection. setting the study was conducted in eight public special school in the deep rural areas of the limpopo province. special schools are separate schools or classes, specifically designed for students categorised as having special educational needs. the three schools were selected from the capricorn district, two from the waterberg and vhembe districts, respectively, and one each from the sekhukhune and mopani districts. children in these schools require additional support and adaptive pedagogical methods to participate and meet learning objectives in an educational programme. the selected schools admit around 288 to 380 learners with different physical, behavioural, intellectual, emotional and social capacities. the schools were chosen because they had the highest number of learners with asd in the limpopo province. the number of children with asd from these school were between 6 and 23. only caregivers of children with asd participated in the study. sampling of participants participants were recruited though the special schools where their asd children are admitted. appointments were made with the school principals whereby the researcher presented her study by explaining what the study entailed and its purpose. the school principals arranged a meeting with the school governing bodies and caregivers for the researcher to inform them about the study and explain its purpose. english or xitsonga, sepedi and tshivenda information sheets were provided to the caregivers together with consent forms. those who were willing to participate were requested to sign the consent form. for those who were unable to attend the meeting, their asd children were handed the informed consent form and information sheet to present to their caregivers, asking them to indicate whether they would like to participate or not and returning the form to the school with the child. twenty-eight caregivers were selected through the purposive-convenient sampling method. the participants consisted of eighteen mothers, two grandmothers, one uncle, one aunt, one helper, one brother and five fathers. the selected participants had experience in caregiving for children with asd, were staying with the child in the same household and engaged in the child’s day-to-day care. eighteen participants were mothers of children with asd, followed by five fathers, two grandparents and one aunt, brother and uncle, respectively. most of the participants were of middle age, and all grandparents were pensioners above 60 years. majority rely on small-scale farming, social grants and lowest paying jobs for survival. their asd children were between 7 and 17 years of age of which most of them were boys. table 1 summaries the participants’ characteristics. table 1: participants characteristics. data collection data were collected by the researcher at the venue that was convenient for the participant either at the selected special school during school hours in a private room or at their homes. the selected venue was spacious and comfortable for participants. face-to-face semi-structured interviews were chosen to address this study’s research questions and objectives. to explore the participants’ experiences, the researcher started with a general question, ‘can you share with me the strategies that you use to cope with raising a child with autism’. the researcher used probing to understand better how this phenomenon was experienced. the probing question used was: ‘regarding the situations that were particularly stressful what steps did you take then?’ a notebook and pen were used to record and keep field notes during the observations and watch verbal and non-verbal communication. a tape-recording device audio-recorded the conversation during individual interviews. the researcher sought the participant’s permission to take notes and record the interviews. data were collected until data saturation. after the 20th interview, the data became saturated; however, eight more interviews were conducted by the researcher to validate the saturation of the data. data analysis the initial step in data analysis was to transcribe the unprocessed interview data. after every interview was finished, audio-recorded interviews were transcribed verbatim. in this study, thematic analysis was utilised. to get a sense of the caregivers’ viewpoints and overall meaning, the researcher and the supervisor first critically reread the first five transcripts (creswell 2014). after that, we coded the transcripts, and the researcher produced an initial list of nodes in the nvivo®. prior to evaluating the themes to create an overall group analysis, we individually examined each transcript. then, we arranged the themes into interconnected hierarchies (i.e., themes, subthemes and categories). after that, a meeting is scheduled to decide on the codes. this triangulation procedure produced the necessary codes that the researcher could use to continue the data analysis process, hence reducing the inter-rater difference. to enhance trustworthiness and verify coding precision, the research supervisors examined the initial units of the meaning code for every interview transcript. they discussed any discrepancies after comparing the data analysis and themes to a consistency check. furthermore, following a review of the coding units for five transcripts and the themes or subjects for the entire sample, the co-supervisor, a skilled qualitative researcher, offered general remarks and recommendations. once the data analysis was finished, the research team met once more to decide on the final codes as well as the themes, subthemes and categories. the co-corder validated and confirmed the themes by reading and evaluating each transcript, looking over the themes, supporting information and transcripts again. the theme was excluded if the co-corder and the researcher discovered data or information that did not support the themes or the experiences of the caregivers. after reaching a consensus, the ultimate themes were determined. ethical considerations ethical clearance to conduct this study was obtained from the university of limpopo, turfloop research ethics committee (no. trec/232/2016:pg). the department of basic education and the special school principals granted permission for the data collection. the researcher first visited the selected special schools to request permission from the principals of the schools and to explain the outline of the study and its purpose. the school principals organised the caregivers on a set date for the researcher to inform them regarding the study. the researcher outlined the purpose, objectives and importance of the study and invited them to participate in the study. the date and time for the interviews were set for those who gave consent. prior to the interviews, study participants signed an informed consent form, indicating that their participation was voluntary. the researcher had no relationship with the study setting. results two themes and fourteen subthemes emerged from the results as illustrated on table 2. the study showed that the caregivers use strategies that were mostly likely to be positive and negative to cope with the caring and raising of a child with asd. below is the description of themes and subthemes: table 2: study findings. theme 1: negative emotion-focused coping strategies the negative emotion-focused coping strategies according to this study were those strategies that negatively influence the caregiver’s adaptation to the situation. some of these strategies encourage them to refuse to accept the reality, view the situation as a threat, isolate themselves from others and release their emotions as discussed below. denial the caregivers expressed that when they first learned that their children had autism, they were upset and doubted themselves. several caregivers admitted that they initially refused to accept the fact that their children had autism. they expressed that they had frequently questioned why they have this child. while others expressed to have spent sleepless nights, others used to lock themselves in their homes. they felt this way because none of their families had a child with autism; some even claimed to be in denial because they were unaware of the condition. as evidenced by: ‘at the beginning i could not believe it, i use to wake up at night and ask myself why god gave me this child, i could not accept him. i used to lock myself in the house and ask myself too many questions because number one i did not even understand what autism is.’ (p3, widow, 64 years old, capricorn) ‘i used to ask myself “why me” why am i having a child like this one, because we do not have a child who is like this in my family, i could not believe it.’ (p1, married, 50 years old, capricorn) emotional release the study found some caregivers, specifically mothers of children with asd, reported to cope with the stress of raising a child with asd by expressing their emotions through releasing emotions such as crying. some caregivers highlighted that they cried because they cannot cope with the burden of caring a child who needs special attention, supervision and strict monitoring. caregivers reported that crying helps them feel better, reduces stress and keeps them calm. three participants expressed how crying relieves their stress, as evidenced by the following quotations: ‘crying also helps a lot it makes you become calm and digest things well.’ (p5, married, 35 years old, capricorn) ‘whenever [i] am stressed i just keep it to myself i do not like sharing my problems with anyone. sometimes i would just cry alone until i become fine.’ (p10, widow, 46 years old, waterberg) ‘i just go to my room and lock [the door] then i would cry to feel better once [i] am fine then i can be able to talk.’ (p8, single, 29 years old, capricorn) cognitive distortions autism spectrum disorder children tend to do best when they have a highly structured schedule or routine; these include regular times for meals, therapy, school and bedtime. in this study, some of the caregivers highlighted that therapy and school are ineffective for their children. they expressed that they have been taking their children for therapy or school; however, there is no progress. as a result, some caregivers are thinking of switching schools, while others gave up on the therapy. this coping strategy makes them more stressed and makes it more challenging to resolve their situation. a female caregiver of a 7-year-old boy expressed how she gave up on the therapy, because she thought that it was not working: ‘since we started taking him for speech therapy and physiotherapy when he was five years old, i did not notice any progress, they didn’t help him with anything, we ended up giving up everything thinking that nothing was working.’ (p17, single, 44 years old, sekhukhune) a male caregiver of a 9-year-old boy expressed that the special school is making his son’s condition worse rather than better, and the situation makes the family to be more stressed: ‘we think that the school is not working for our child, when we took him home during school holidays his progress is slowing down rather than improving. when he is at school, he is shockingly quiet and appears to be lost. we are frustrated as a family because he is not improving, but if he returns home, you will find him engaged and he improves steadily. even though we have not decided yet, we even thought about changing his school.’ (p5, married, 35 years old, capricorn) overprotection seven caregivers expressed that they have an intense fear of being separated from their asd children. however, they coped very well when they are with their children every day. they made it clear that they did not want their asd children to attend boarding school. they also feel uncomfortable leaving their children with others if they needed to go somewhere, because other people would not understand their children’s behavioural problems and how to manage it. instead, they preferred to bring their children everywhere they went. as evidenced by: ‘we do not want her to stay in hostel, we want to take care of her ourselves. we want her to go to school and come back every day, so that even when she is not feeling well, we will be able to see her and take her to the doctor.’ (p16, single, 49 years old, sekhukhune) ‘i don’t like to leave him with other people because they won’t understand his needs, like the type of food that he eats.’ (p4, married, 65 years old, capricorn) self-isolation the caregivers emphasised that because asd children require continuous care, they are forced to live alone and have no opportunity to see friends or family. a few mentioned that their children are hyperactive and enjoy touching, pressing and damaging objects, which makes them uncomfortable when they visit other people. some were concerned that their children may become irritated and uncontrollable when they visited others because of unfamiliar surroundings. additionally, caregivers noted that because of the caregiving responsibilities, it is extremely difficult for them to attend funerals or other family gatherings. others choose not to attend family gatherings because they worry that the children with asd may be mistreated there. a few mentioned that they would need to return as soon as possible if they happened to go anywhere. therefore, caregivers are under pressure because they have to live in isolation to cope with the continual care that children with asd demand. an 8-year-old boy’s mother described how she coped with the situation: ‘i cannot visit my friends or anyone because when we arrived there he will touch and breaks other people things. if i left him at home with his aunt, i made sure that i come back as soon as possible, and i told them that they must guard him so that he does not destroy a lot of things while i am away.’ (p14, single, 43 years old, waterberg) an 8-year-old boy’s mother expressed that she uses self-isolation because the community does not treat his son well because of his behavioural problems: ‘it affects me because i do not even attend to family social functions anymore, because of the way they are treating him, and there is no way that i will leave him with other people because of his behaviour. i am used to it; i do not go anywhere.’ (p20, married, 36 years old, vhembe) child isolation some caregivers have discovered that the best way to manage raising a child with asd is to keep the children locked away to prevent them from injuring themselves or others because of their behavioural issues. the caregivers emphasised that they are forced to employ this approach, even though it is not the ideal approach. the mother of a 10-year-old boy who attends a boarding school explained her need to keep the boy hidden during school holidays: ‘i am compelled to put him under lock and key as everyone is terrified of him. he is not allowed to play with other kids. we are not welcomed where we live, which makes the situation challenging. people keep their kids away from him because he used to beat them, but things are much better today. three of the tenants in our rental rooms left last month because they were terrified of him at home.’ (p9, married, 48 years old, waterberg) another mother of a 17-year-old girl expressed her situation that forced her to keep the child under lock and key: ‘i do not allow her to get out of the yard because her behaviour is unacceptable and our neighbours, they do not like her. she will open our neighbours’ refrigerator and consume whatever is inside while she is there. that is why i bought a fence so that i will always lock the gate for her. she watches other children playing over the fence and she feels happy by seeing them running up and down.’ (p1, married, 50 years old, capricorn) a mother of a 12-year-old boy expressed how she deals with the situation of taking her child for a follow up at the hospital: ‘when i took her for [a] follow up at the hospital, i hire a private transport as she will touch everyone in the taxi and other people, they don’t like it. some other people will hurt you with their words, which is the reason i am using this strategy.’ (p16, single, 49 years old, sekhukhune) negative self-talk the study found that the caregivers sometimes experienced an endless stream of unspoken thoughts that ran through their heads. the most negative self-talk was about who will raise their children if they pass away. caregivers of children with asd also had ongoing concerns about what would happen to them during puberty or the teenage years because of their low iqs and lack of understanding of what is truly happening. caregivers of girls with asd voiced concern that their children might be abused and end up pregnant. some caregivers were always concerned that having a child with asd and death are the same thing because it hurts so much. most of the caregivers expressed their negative self-talk that really affects their coping skills; one participant who is a mother of a 17-year-old child with asd highlighted that: ‘having a child with asd is just like death is painful’. (p13, single, 35 years old, waterberg) another participant who was also a mother said that: ‘what will happen to our children when we die, because if we die, they will experience a big problem on their own? (p9, married, 48 years old, waterberg) a 37 old participant who was also a mother of an 8-year gild with asd expressed the following: “i have got a fear because my child is a girl, i am just afraid of her puberty and adolescent stage as i don’t know what will happen to her as she doesn’t understand the consequences of sex”.’ (p6, single, 47 years old, capricorn) corporal punishment few caregivers said it was challenging to control their children’s behavioural issues; as a result, they end up disciplining them: ‘one day i decided to follow him next door and discipline him, i beat him and then he said, “i am sorry mama”. since that day he has never behave[d] the way, he uses to behaved, i taught him a lesson’. (p8, single, 29 years old, capricorn) ‘is not did you know that children with autism 90% of them are boys sometimes they experience seizures, i used to hit my child during seizures because it was childish behaviour, not realizing that it was an epileptic seizure. i thought that he is just throwing himself down for attention seeking. after the seizure i will scold on the child. however, i felt bad after i was told that it is an epileptic seizure.’ (p3, widow, 64 years old, capricorn) theme 2: positive emotion-focused coping strategies the results of the study demonstrated that some participants perceived their circumstance as a learning opportunity and analysed it constructively. this allowed them to employ coping mechanisms that lessen the stress associated with raising an autistic child. the following describes the positive emotion-focused coping mechanisms that the caregivers use. reframe the caregivers further explained that after dealing with their denial stage, as time went on, they later adopted a more positive outlook on the situation. they emphasised how having a child with asd had been a benefit for them, as it had allowed them to gain insights and understanding from the circumstance. mothers of children with asd who were also teachers at the special school were given the first preference for receiving autism training at work, which benefited their dual roles. the caregivers used the information and experience they had gained from their asd children to help other parents of asd children in their communities. a mother of a 17-year-old autistic child expressed how she chose to see the bright side of the situation and how she helps other women in her neighbourhood who are in similar circumstances. she considered this to be a blessing: ‘at first, it was extremely painful, and i was upset that my child has autism. however, i have since realized that i am fortunate that my child has taught me something new and that i am experiencing something that others are not. although my knowledge of autism is still limited, however, i will be able to counsel others in need of guidance regarding autistic children. i am glad that because i have a child with autism, the school used to take me to more workshops, specifically on autism. i discovered that my son was doing exactly what they were teaching at the workshops. if they can say, “write a book about your child”, i will, as it is something i go through every day. i was invited to visit the clinic one day so that i could speak with the mothers of autistic children.’ (p28, married, 43 years old, mopani) another mother of a 14-year-old autistic child mentioned how his son, who solely speaks english that he has acquired from television, has helped her get better at the language: ‘although my child could not speak, then i would put him in the tv room and turn on the cartoon channel. it was now that he trained himself to speak english. as for his language, it is solely english. because i had to speak english with him, my ability to speak in english has therefore improved. given that some of my family does not speak english, i even translate for them.’ (p21, married, 54 years old, vhembe) acceptance the study also found that loving and accepting the asd children was the common strategy that was utilised by the caregivers to cope with the stress of having and raising a child with asd. caregivers expressed that even though it takes time to love and accept the child, this strategy is reported to be one of the most important strategies: ‘it took time for me to accept her i started accepting her when she started grade r at the special school when another teacher set me down and explained to me and i started accepting her. it affected me but now i think am fine because whenever i do not see her, i get worried i just want her close to me. i think the first thing that other parents can do is to accept, if you accept your child the way they are it is a start and know that it is not something that will change.’ (p11, single, 25 years old, waterberg) ‘the first thing in coping is to love your child; i love him a lot that’s why i can cope.’ (p4, married, 65 years old, capricorn) ‘the first thing to cope with is to accept your child. i have accepted my child and even here at home they call him mommy’s child. if he can be out and i do not see him playing outside i get worried.’ (p23, married, 53 years old, vhembe) however, there are caregivers who expressed that it is not easy to accept the situation: ‘[i]t is so painful when i start talking about her, even if is its long that she has been there, but the situation is not simple to accept, is just like death is painful.’ (p24, single, 37 years old, vhembe) positive re-interpretation or re-appraisal the study also found that other caregivers cope by using various positive perspectives to reaffirm or instil hope in their children’s situations such as complementing the children when they help with the house chores, allowing their children interact with other autistic people, motivating asd children by those who have succeeded in life, perceiving the situation positively despite the negative public attitude and taking the asd child for an outing to celebrate their birthdays. all these strategies were reported to instil hope in their situation: ‘i always praise her whenever she assists with house chores.’ (p27, married, 48 years old, mopani) ’when coming to house chores he doesn’t have a problem because he helps a lot.’ (p13, single, 35 years old, waterberg) ‘we even tried taking her to relatives in polokwane where they have children with autism so that she can learn to accept herself and that there are people like her because she used to believe she is the only one like that. since she came to this school even when people call her by names she does not get bothered.’ (p7, single, 30 years old, capricorn) ‘whether or not he is autistic, i am free to take him wherever i want for socializing on occasion, i took him to mcdonald’s and bela mall. i make each of my children feel extra special by going to each of their birthday celebrations.’ (p10, widow, 46 years old, waterberg) religious coping the study found that most of the participants cope by believing and finding comfort in god and through praying to god. most of the caregivers even if they are not strongly religious have adopted this method in coping with the asd situation. most of the caregivers, who are also mothers of children with asd, explained how religion assisted them to cope: ‘you also must accept what god has given you because that is the first step to coping. what made me cope was praying telling god all my problems day and night. my friend is a bible i do not run to someone for help or solutions i just kneel and pray. my knees will bring me solutions.’ (p2, single, 27 years old, capricorn) ‘whenever i face any challenge in my life i just kneel and pray. my knees are my weapons so in any stressful situation i just trust in god.’ (p5, married, 35 years old, capricorn) ‘i am a christian, so i do know that god will not give you something that is not suitable for you. if we had to choose no one would choose something bad, we would all choose the good one. i believe in god so whatever challenge i come across i give it to god. i pray and tell him about my troubles or problems. i also know that god will not give you a problem without a solution.’ (p17, single, 44 years old, sekhukhune) theme 3: problem-focused strategies the caregivers were also found to be utilising the problem-focused coping strategies to handle the stressful situation by tackling the problem that causes the stressful situation. the problem-focused coping strategies include peer group support, professional support, social emotional support, adaptive coping and active coping. adaptive coping or skills the study found that parents cope by learning how to live better with their children with special needs. the participants expressed various adaptive skills that they use to cope with their children such as learning sign language to communicate with their asd children with impaired speech, continuous monitoring, supervision, learning about their behavioural problems and how to manage them, being patient, giving the child attention and teaching the children certain skills as evidenced from the following quotations: when she hugs me, i always make sure to pay attention to her so i can figure out what she wants. to improve our communication, i’m also attempting to learn sign language.’ (p16, single, 49 years old, sekhukhune) ‘i saw his behaviour and knew that if i got into a confrontation with him, he would leave the house and not come back. he won’t have somewhere to go if i pursue him from my house’ (p18, single, 31 years old, vhembe) he needs to be watched closely since he will leave everything behind if you give him a task and walk away.’ (p4, married, 65 years old, capricorn) ‘at home, we can relate to him when he needs to use the restroom because there are certain words that he uses that a stranger would not understand. we also take care not to overfeed him dairy products because we know that would cause issues for him. since my son eats a lot – he may even eat all day – we make sure to restrict items like milk and mayonnaise.’ (p7, single, 30 years old, capricon) ‘when i’m at home, i try to teach him how to read and write. he is slow, so i simply make sure i’m patient enough with him.’ (p9, married, 48 years old, waterberg) active coping it has been discovered that caregivers of children with asd cope by speaking out for their children and addressing the issue at hand. the following are examples of active coping strategies highlighted by the participants: parent–teacher conferences to discuss potty training, adjusting the surroundings to match the needs of the child and asking for help from neighbours and community leaders to address concerns of rejection of the child. it is evident from the following quotations: ‘“i even took my grievances to the local leaders, and they called a community meeting to let the parents know that their kids shouldn’t be making fun of her at home. because of his speech impediment, he used to even pass stools on himself in the classroom because his teachers couldn’t understand him. but now that i’ve had to sit down and explain it to his class teacher, i believe the issue is resolved” when he first started coming to this school, i was contacted, and we went to sit down with the instructor to go over the language he uses to ask to use the restroom.’ (p19, single, 32, vhembe) ‘there was a time i was called at school when he first attended school here and they and we sat down with the teacher to explain to her the words he uses when he wants to go to the toilet.’ (p20, married, 36, vhembe) peer-group emotional support the caregivers highlighted that sharing problems with people with the same problems is important to assist each other with the solutions. nonetheless, every caregiver noted that there are no support groups available for caregivers of children with asd at special schools or in their local communities. the caregivers stressed how crucial it is for special schools or communities to establish support groups where parents may gather to share their experiences to cope successfully with raising a child with asd. it is evident from the following quotations: ‘another important thing is to have parents’ support groups according to their children’s asd so that we can share their problems and coping strategies.’ (p20, married, 36 years old, vhembe) ‘at this school, there is no support group for parents of children with asd, ever since my child came here, we have never had a meeting as parents where we share our problems, challenges, and our coping strategies with each other according to our children’s asd. i tried mentioning it and i ended up fighting with the teachers here because of that.’ (p21, married, 54 years old, vhembe) ‘i think a quarterly support group meeting for parents of children with asd.’ (p23, married, 53 years old, vhembe) professional emotional support every caregiver emphasised that after learning of their children’s diagnosis, they had not been advised to seek professional counselling. it was discovered that most caregivers were using alternate coping mechanisms in the absence of professional counselling. even though they have never been referred, some stressed how much they would like to talk to the psychologist. very few caregivers of children with asd reported having gotten counselling from nurses or school teachers, which assisted them a lot with coping: ‘another teacher at this school helped me a lot to understand my child because it was hard, and she told me that we don’t get to choose which children we want, and god won’t give you a challenge that he knows you won’t be able to deal with. she also told me that god had a purpose by giving her a child like her and a psychologist also helped.’ (p17, single, 44 years old, sekhukhune) ‘another professional nurse tried to console me and said she will be a human being. i went for counselling three times until a time came and i decided to take my child home, but i knew that she will not be a child-like other.’ (p12, single, 40 years old, waterberg) ‘the psychologist should be available because it will help other parents who can’t cope well.’ (p15, single, 27 years old, sekhukhune) social emotional support the study found that caregivers also coped emotionally by getting support from family, friends, spouse and the community at large. most participants emphasised how supportive their mothers and spouses are at all times, and how this helps them manage the stress and caregiving responsibilities that come with raising a child with asd. some said that the other children always help and support them with their caregiving responsibilities, which makes them feel so supported at home. some emphasised how accepting their neighbours and communities have been of their asd children. as their families, spouses and neighbours are always there for them, they stressed that it is simpler for them to share their problems with them. it is evident from the following quotations: ‘i cope because, i stay with my husband and children, they support me, they don’t have a problem.’ (p8, single, 29 years old, capricorn) ‘in the community where we stay, i do not see a problem they do accept her. to be honest my mom is my support system, she helped me a lot with my child when i could not accept that my child is autistic. whenever am stressed with anything she is the first person i talk to.’ (p14, single, 43 years old, waterberg) ‘we sat down as a family and her father is someone who loves his children a lot and he was so supportive. what made me cope was the family support they supported us a lot.’ (p11, single, 25 years old, waterberg) ‘the support that we provide to each other as the family keeps me going. my other children help take care of the child with asd and they understood her condition.’ (p19, single, 32 years old, vhembe) ‘my brother is the one person i can talk to when i have problems, he helps me come up with solutions and he gives me advice regarding any situation i would be facing at that time, my brother is my support system.’ (p26, married, 43 years old, vhembe) discussion this research explored and described the coping strategies adopted by the caregivers of children with asd in the limpopo province, south africa. the study found that caregivers of children with asd perceived raising or having a child with asd as a threat, challenge and loss, and this generated emotions. they describe their situation as a stressful one because there are limited integrated social support services focusing on caregivers or families of children with asd. as a result, the caregivers employed various strategies that have positive and negative effects to overcome their stressful situation. the strategies include the positive and negative emotion-focused strategies as well as the problem-focused strategies. the negative coping mechanisms include denial, release of emotions, isolation of self and the child, overprotection, cognitive distortion, punishment and negative self-talk, whereas the positive coping mechanisms include reframing, acceptance, positive appraisals, religious and self-talk. the problem-focused coping strategies include adaptive coping, active coping and acquiring professional, social and peer emotional support. in this study, the negative emotion-focused coping techniques negatively influence the caregivers’ ability to adjust to the situation. the emotional distress of the caregivers was not lessened by using these negative coping mechanisms. despite having raised the child for many years, several caregivers were still becoming emotional when describing their circumstances. this is in line with the previous studies that questioned the effectiveness of emotion-focused strategies in parents of children with asd (side & kumar 2022; miranda, et al. 2019; zhou et al. 2019). similarly, emotion coping strategies such as denial are reported to have a negative impact on caregivers’ stress (amireh 2019; bozkurt, uysal & düzkaya 2019). asd children are deprived of the opportunity to explore the outside world because of negative coping mechanisms adopted by their caregivers such as overprotection, punishment and isolation. these strategies may lower the self-esteem of the child which can result in a lifetime of underachievement and failure to reach their full potential (berjot & gillet 2011; ishtiaq et al. 2020; obbarius et al. 2021). the study’s setting and the participants’ socioeconomic background may have had a role in their adoption of these strategies. most of the participants came from deeply rural areas, were less educated and have less access to or understanding of psychotherapy. however, other caregivers maintained hope and optimism by using the positive emotion-focused coping mechanisms, which reduced their emotional distress (ang & loh 2019). the participants with dual roles of being a mother and a teacher of children with asd adopted these strategies. caregivers who were using the positive emotionand problem-focused coping techniques were found to have positive stress. it is possible that their in-depth understanding and passion for asd led to the adoption of these strategies. all the caregivers emphasised that although it was initially difficult, however, accepting the child was the most important and crucial step in learning to deal with the situation effectively. similarly, the previous studies reported acceptance as one of the more effective mechanisms in coping with stress (brown et al. 2020; balubaid & sahab 2017), and this is associated with increased life satisfaction (havighurst et al. 2020). only after awareness and acceptance that a child has asd, the caregiver would proceed to the next stage of training and skill development (pisula & banasiak 2020). the belief in or support of religion was another strategy that was frequently cited as providing caregivers with hope and courage to deal with the situation like the previous studies (craig et al. 2020; davis iii & kiang 2020; furrukh & anjum 2020). this is in line with the previous research religious coping was seen to be more commonly employed as compared to other coping styles (selvakumar & panicker 2020; side & kumar 2022; wei-chih et al. 2023). the religious practice was reported to give them peace of mind and helped them to endure the caregiving situation (loewenstein et al. 2019). the caregivers who were using a coping mechanism such as reframing spoke openly about their circumstances with confidence and showed no evidence of emotional strain. similarly, the use of positive reframing and positive reinterpretation assisted in overcoming and adapting to the current difficult situation (demšar & bakracevic 2023; loewenstein et al. 2019; selvakumar & panicker 2020). in this study, the caregivers adopted positive strategies to convince themselves about the actual conditions of raising a child with asd so they could see the situation as non-threatening rather than threatening. recommendations according to the study, caregivers of children with asd in limpopo province are not given enough support to help them deal with the stress of raising an asd child. however, the national mental health policy framework and strategic plan 2013–2020 (department of health 2012), highlighted that maximum support should be provided to families and caregivers of those with mental illness to broaden the network of support and care. a ministerial task team, therefore, should be established to oversee the policy’s implementation. integrated services and social support for families of children with asd are the most crucial elements that need to be closely observed in a rural area like limpopo province. health care facilities and special schools shall be monitored and assessed by the department of health, basic education and social development at the district level for their ability to provide integrated services and social support to families and caregivers of individuals with asd. semi-structured interviews and situation analysis with the key stakeholders, such as parents, caregivers, families, religious leaders, nurses, social workers, psychologists and special education teachers, might be used to accomplish these. furthermore, to provide caregivers with the most social support possible, coordination and collaboration across various community resources such as social services, health and religious groups are required. conclusion this study utilised lazarus and folkman’s transactional model of stress and coping theoretical framework and qualitative methods to determine and characterise the distinct coping strategies employed by caregivers of children with asd. this study showed that most caregivers have been able to cope, adjust and often grow up to fulfil the demands of these children, even though there is a peek at the everyday stress they suffer. in conclusion, the coping methods that have been identified can be integrated into intervention programmes and serve as a guide for specialised institutions that offer more extensive knowledge and assistance to families who are caring for children with asd. this study will assist mental health care providers in giving caregivers greater care and support through counselling and education on coping mechanisms and adaptation techniques. acknowledgements the author would like to thank the department of basic education in the limpopo province, along with special schools, for being the entry points for accessing the caregivers of children with asd. the author appreciates the caregivers who shared their experiences with children on the autistic spectrum and a special thank you to my late supervisor prof. j.c. kgole, who provided unwavering support over the entire study. competing interests the author declares that he has no financial or personal relationship(s) that may have inappropriately influenced him in writing this article. author’s contributions g.o.s. declares that they are the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available on reasonable request from the corresponding author, g.o.s. as the data may contain information that jeopardises research participants’ privacy, they are not publicly accessible. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this study’s results, 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muhamad, r., 2022, ‘a journey towards resilience: coping strategies adopted by parents with children having autism spectrum disorder in northeast malaysia’, international journal of environmental research and public health 19(4), 2458. https://doi.org/10.3390/ijerph19042458 zhou, y., yin, h., wang, m. & wang, j., 2019, ‘the effect of family-focused psychoeducational therapy for autism spectrum disorder children’s parents on parenting self-efficacy and emotion’, archives of psychiatric nursing 33(1), 17–22. https://doi.org/10.1016/j.apnu.2018.08.002 abstract introduction literature review research method and design results ethical considerations discussion limitations of the study conclusion acknowledgements references about the author(s) karen wylie ent department, korle bu teaching hospital, ghana work integrated learning department, faculty of health sciences, university of sydney, australia department of audiology, speech & language therapy, university of ghana, ghana lindy mcallister work integrated learning department, faculty of health sciences, university of sydney, australia bronwyn davidson department of audiology & speech pathology, the university of melbourne, australia julie marshall health professions department, manchester metropolitan university, united kingdom citation wylie, k., mcallister, l., davidson, b. & marshall, j., 2018, ‘communication rehabilitation in sub-saharan africa: the role of speech and language therapists’, african journal of disability 7(0), a338. https://doi.org/10.4102/ajod.v7i0.338 original research communication rehabilitation in sub-saharan africa: the role of speech and language therapists karen wylie, lindy mcallister, bronwyn davidson, julie marshall received: 06 nov. 2016; accepted: 25 jul. 2017; published: 12 apr. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: workforce factors present a significant barrier to the development of rehabilitation services for people with communication disabilities in sub-saharan africa (ssa). exploring how the work of speech and language therapists (slts) in the region is organised and delivered can provide insight into existing services, areas for future workforce development and improved rehabilitation access for people with communication disability. objectives: this paper describes the employment and service provision patterns and work roles of a sample of slts in ssa. method: a broad, purpose-designed, mixed-methods survey was designed to collect data from slts living in anglophone countries of ssa. descriptive statistics and qualitative content analysis were undertaken. this paper reports on a subset of data from the wider survey. results: a description of the employment and work roles of the 33 respondents to the survey and characteristics of their service users is presented. slts were commonly employed within private and not-for-profit sectors and frequently worked in temporary jobs. slts engaged in a range of work roles, including capacity building and training others. services were provided by slts across age ranges, health conditions and settings, with paediatric, urban services commonly reported. costs for service users and urban-centred services give indications of barriers to service access. conclusion: knowledge of the way in which speech and language therapy services are organised and provided has the potential to shape the development of communication disability rehabilitation in ssa. this research has identified a range of issues requiring consideration as the profession develops and grows. introduction despite an increasing global focus on inclusion and the rights of people with disabilities (pwd), rehabilitation services continue to be extremely limited in countries of the majority world, including in sub-saharan africa (ssa). many pwd report limited access to rehabilitation services (eide & loeb 2006; eide & kamaleri 2009; loeb & eide 2004; world bank & world health organization 2011). increasing the availability of rehabilitation and habilitation services for pwd is critical and forms one of the three objectives of the world health organization’s disability action plan 2014–2021 (2015). (note: in this paper the terms majority and minority world are used to replace the terminology ‘developed’ and ‘developing’ countries.) this paper focuses on workforce factors limiting the development of rehabilitation services for people with communication disability (pwcd) in ssa. pwcd have been described as: a population whose ability to communicate is affected by their response to an impairment and/or social and contextual factors which interrelate with each other and with the person themselves, resulting in impaired communication skills. (hartley 1998:277) two alternate paradigms have commonly been used to conceptualise disability. historically, the medical model of disability was the dominant approach and considered impairment to be the causative factor in disability, while more recently the social model of disability attributed societal and environmental factors as the sole cause of disability. while debates about disability theory continue (shakespeare & watson 2002), in practice the biopsychosocial model of disability (world health organization 2001) has become widely adopted in rehabilitation. this model is represented in the international classification of functioning disability and health (world health organization 2001) and represents disability as a result of the inter-relationship between a health condition, personal and contextual factors, subsequently impacting a person’s activities and participation. responding effectively to the diverse rehabilitation needs of pwcd requires a workforce with a suitable mix of skills; however, there are recognised global shortages in the rehabilitation workforce, particularly in the majority world (world health organization 2017). in ssa, speech and language therapists (slts) are rarely available (fagan & jacobs 2009) and community-based rehabilitation (cbr) workers frequently lack training in communication disability (nganwa, batesaki & mallya 2013; world bank & world health organization 2011). indicative figures for the availability of slts in ssa are broadly suggestive of a workforce density of between 0 and 6 slt per million population (fagan & jacobs 2009; wylie et al. 2012). (figures exclude south africa where the profession of slt is well established [pillay & kathard 2015].) however, there are indications of growth in the slt profession in ssa across recent years, with the development of training programmes in a number of african countries, including ghana, togo, kenya, mozambique and uganda (wylie et al. 2016). currently, there is limited documented information about the nature and organisation of the work of slts in ssa. understanding the characteristics of the existing speech and language therapy workforce, including the scope of practice, has potential to assist in the planning and strengthening of services (gupta, castillo-laborde & landry 2011) and allow consideration of how this emerging profession contributes to rehabilitation services for pwcd in the region. a previous paper (wylie et al. 2016) described survey results from a sample of the slt workforce in ssa, including their demographic composition, training and experience, and identified patterns suggestive of increasing localisation of the slt workforce (i.e. more african nationals rather than foreigners working as slts). in light of the recent growth in training of slts (wylie et al. 2016), there is an imperative to ensure the direction of the emerging profession and services are both appropriate and responsive to the needs in communities they serve. this paper contributes to the debate about the most appropriate way to develop services for communication disability rehabilitation in ssa by describing the employment patterns, roles and characteristics of service users of a sample of the slt workforce in the region. literature review many people with communication disabilities may seek rehabilitation across their lifetime. in this paper, the term rehabilitation is used to represent: a set of measures that assist individuals who experience, or are likely to experience disability, to achieve and maintain optimal functioning in interaction with their environments. (world bank & world health organization 2011:96) rehabilitation is cross-sectoral and may involve a wide range of workers in service delivery, including volunteers, cbr workers, allied health staff, doctors and family members. it is vital that an appropriate range of rehabilitation services are available, in order to promote participation in work, education and community engagement (world health organization 2015). in the majority world, including ssa, cbr services and medical rehabilitation services frequently coexist (world health organization 2015). medical rehabilitation is often associated with health care systems, with services provided by professionals with skills in a particular area of rehabilitation (haig 2013), including rehabilitation physicians, occupational therapists, physiotherapists and slts. in countries of the minority world, medical rehabilitation services are frequently well developed. in contrast, cbr is widely adopted in majority world including ssa (hartley et al. 2010) and offers a broad approach to rehabilitation, using five interrelated components: health, education, livelihood, social and empowerment (international labour organization, unesco & world health organization 2010). cbr services are typically delivered by community workers with general and limited training. there is now increasing recognition that a range of rehabilitation approaches, including a mix of cbr and more specialised medical rehabilitation services, are essential to provide a holistic model of rehabilitation in the region (nganwa et al. 2013). this includes increasing the availability of more specialised rehabilitation professionals, including slts (nganwa et al. 2013; world bank & world health organization 2011; world health organization 2017). slt is a western profession that has evolved within the rehabilitation frameworks and belief systems of europe and north america (pillay & kathard 2015; sherry 2007) and is historically associated with medical rehabilitation. slts have specialised skills in the rehabilitation of communication and swallowing. in the minority world, slts typically work with both children and adults with a range of communication and swallowing disabilities including primary communication disabilities such as speech and language delays or disorders, or those secondary to developmental disabilities, such as cerebral palsy, autism and hearing loss. individuals may also seek communication rehabilitation services for acquired communication disabilities following a range of health events such as stroke, head injury or head and neck cancer. slt services are commonly integrated within multidisciplinary rehabilitation teams in the minority world countries. slts, with their specialised knowledge in the field of communication disability, are likely to have key roles to play in communication disability rehabilitation in majority world countries. these roles may include both providing communication disability rehabilitation for people with acute and complex communication needs and supporting and training cbr workers and others in providing basic rehabilitation services for pwcd (wylie et al. 2016). however, it is unclear how slts currently work in majority world contexts, where cbr and medical rehabilitation services may coexist. human resources for rehabilitation are a significant issue globally (gupta et al. 2011; world bank & world health organization 2011; world health organization 2017). one of the identified objectives of the who disability action plan (2014–2021) (world health organization 2015) is to strengthen and extend rehabilitation services, through development and maintenance of a sustainable rehabilitation workforce. it is not the size of the workforce alone that is critical to improving rehabilitation services. the ways in which the workforce is organised and supported directly impacts the performance of the health system (chen et al. 2004). issues including difficulties achieving a suitable mix of skills in health workers, inappropriate distribution of workers, poor working environments and a lack of ongoing training may impact the effectiveness of services (chen et al. 2004). there is little documented information on how the profession of slt is organised and supported and the challenges faced by this profession in the delivery of services in ssa. this paper reports on initial exploratory research into the profession of slt in ssa. it presents data describing a sample of slts in ssa and provides an overview of their employment patterns, work roles and work-related activities undertaken by slts. the paper then explores the characteristics of groups of pwcd who receive services provided by the slts surveyed. this paper is the second in a series of two. its companion paper (wylie et al. 2016) previously described the demographics, education, professional experience and geographical stability of the 33 slts who completed the survey. research method and design survey research was undertaken to investigate the characteristics, work and employment of slts across english-speaking countries in ssa. the methodology for this research has been described in more detail in a previous complementary article (wylie et al. 2016). the current paper reports on a subset of data from the survey reporting on employment conditions, work roles of the respondents and characteristics of the pwcd to whom they provide rehabilitation services. materials this research used a purpose-designed survey instrument, developed in line with the process described by punch (2003). survey aims were established across five domains: workforce characteristics, slt education, language and culture, employment and work activities, and continuing education. survey items were developed, reviewed and revised by the research team who had significant experience as slts in majority world settings. because of resource limitations, the survey was provided only in english. piloting of the survey was undertaken with six slts who each had experience working in the majority world. participants were requested to provide feedback on the content and structure of the survey, including the readability of each item. the survey was subsequently modified based on feedback from pilot participants. the final survey contained 186 items and contained both open and closed questions. the survey took between 45 and 60 min to complete, a significant time commitment for participants. in order to improve recruitment and response opportunities, multiple modes of delivery of the survey were offered: online (survey monkey), emailed attachment (form) in microsoft word, paper copy or via a telephone or callback service. setting this research was undertaken between april 2012 and march 2013 and sought to recruit slts within anglophone countries of ssa. twenty anglophone or partially anglophone countries were included in the research. south africa was excluded from the research because of its long history of slt education (pillay & kathard 2015). selection criteria included self-identifying as an slt and being resident in one of the target countries for 6 months or longer during the study period. because of a lack of regional workplace statistics or listings of professionals, snowball sampling was utilised so that the researchers could draw on local knowledge of slts and other networks in the region to locate potential participants. when probability sampling methods are not possible, snowball sampling can be used to access the population under study (handcock & gile 2011). the inherent risk of bias of this sampling methodology is acknowledged. procedure initial contact was made with a range of potential informants who had contact with or knowledge of communication disability services in target countries. contacts included slts, disability workers, voluntary organisations, professional bodies and academics. contacts were either known personally to the research team or located through internet searches and they, in turn, were asked to forward information about the research to potential respondents. general information, survey resources, links for completion of the survey and contact information were provided to potential participants. paper-based surveys were distributed to eligible slts at the east african conference on communication disability in uganda in 2012. analyses raw data from completed surveys were entered into a microsoft excel spreadsheet. text-based categorical responses were numerically coded according to a priori categories where relevant (e.g. identification of african or non-african nationality). quantitative data were analysed using descriptive statistics. small sample sizes precluded use of inferential statistical analysis. data are presented descriptively and must be interpreted with caution. open-ended survey responses were analysed using qualitative content analysis as described by shreier (2012). following a period of immersion and key word identification, codes were developed inductively from the data and reviewed during first-pass coding; a coding frame was developed and applied to the data from each open question. data within each code were reviewed to ensure internal consistency. the coding frame and coding were reviewed by a second researcher experienced in qualitative research. final codes were organised into hierarchies. results thirty-three completed surveys were received from slts working across nine countries. the demographic mix of respondents is reported in wylie et al. (2016). two-thirds of the sample (n = 22) identified as african nationals while the remaining one-third (n = 11) were non-african nationals, predominantly from european countries. employment and funding sector all respondents reported currently working, holding at least one job (mean 1.45, range 1–3, mode 1). thirty-three respondents reported on a total of 44 jobs. thirty-two jobs were held by 22 african nationality slts and 12 jobs were held by non-african nationality slts. the majority of respondents held one job only, but one-third (n = 11, 33%) of the respondents held more than one job. the term ‘funding sector’ was used to describe in which sectors slts were employed and included government, private and not-for-profit (e.g. non-government organisations and voluntary services) sectors. the largest proportion of slt jobs were in the private sector (n = 20, 45%), followed by the not-for-profit sector (n = 15, 34%) and the government sector (n = 9, 20%). (note: percentages rounded to the nearest percentage point.) qualitative content analysis confirmed this data. in response to an open-ended question asking respondents to describe each job, slts frequently identified their funding sector, including government, private and not-for-profit groups. descriptions of organisations that were considered not-for-profit included: non-government organisation, not-for-profit, consumer group, international voluntary organisation and christian mission. when considered by nationality grouping, the largest proportion of jobs held by african nationals (n = 15, 47%) were in the private sector, with similar proportions observed in the government (n = 9, 28%) and not-for-profit (n = 8, 25%) funding sectors. the largest proportion of jobs reported by non-african nationality respondents was in the not-for-profit sector (n = 7, 58%), followed by the private sector (n = 5, 42%) (figure 1). no non-african national in this sample reported holding a government-funded job. small sample size precluded statistical analysis. figure 1: funding sector of speech and language therapy jobs, by nationality grouping. employment setting employment settings indicated the type of service in which the respondent provided services. as an example, a slt working in a government school would have been considered to be employed by the government (funding sector) but employed to offer services in schools (employment setting). slts were employed in the following settings: non-government organisations (n = 15, 34%); private practice (n = 13, 30%); health services and hospitals (n = 8, 18%); education or schools (n = 6, 14%); and tertiary education (n = 2, 5%). results organised by funding sector and employment setting are presented in table 1. table 1: speech and language therapy jobs by funding sector and employment setting. in an open-ended question about job descriptions, respondents described the location of their workplace, including hospitals, schools, special schools, preschools, client homes, private clinics, universities, rehabilitation centres and disability centres. employment patterns overall, less than half (18 of 44 jobs, 41%) of all jobs were reported as fulltime. participants were asked to identify if roles they held were permanent or temporary or to identify if the type of role made this irrelevant (i.e. independent volunteering or self-owned private practice). overall, of the 44 jobs, 27% (n = 12) fell into the not relevant category. the permanency of applicable jobs, by funding sector, is reported in table 2. table 2: permanency (applicable roles), overall and by funding sector. respondents were asked if there was someone else within the organisation doing similar work (i.e. a professional peer in slt or communication disability). thirty-eight per cent (n = 16) of respondents indicated that they worked alongside a professional peer. the remaining 62% (n = 26) indicated that they did not have a professional peer within their work context. recipients of speech and language therapy services respondents were asked to indicate if their job was ‘clinical’, involving direct service provision to individuals or groups of people with communication disabilities, or had a ‘non-clinical’ (education, community development or programme) focus, where they did not work directly with pwcd. the following section reports on the 33 ‘clinical’ jobs described in the sample. geography slts were predominantly located in urban areas including capital cities and other towns and cities (94%), with the majority of slts (73%) based in the capital city (table 3). table 3: location of speech and language therapists. of the jobs described in this study, two urban-based therapists mentioned visits to rural areas within their job descriptions. ‘i work in a project which visits rural and remote areas on development and integration for people with disabilities, especially communication.’ (id t001, nongovernmental organisation (ngo)/voluntary) ‘i work all over the country, both in urban and rural environments.’ (id e002, ngo/voluntary) within the qualitative content analysis of job descriptions, there was evidence that pwcd travel to receive services and that travel had an impact on service delivery. ‘since my clients come from for like 300km i assess, psycho-educate parents and give advice on further management at home, since they can’t stay at the centre.’ (id pb11, ngo/voluntary) age respondents were asked to rate the frequency in which they worked with people of various ages, using a five-point likert scale. responses were aggregated to represent age groups more and less frequently seen and presented in table 4. more than half of the respondents (n = 18, 55%) indicated that they regularly worked with people across the age ranges – from children to adults (sometimes, always or often). table 4: frequency: age range of speech and language therapy service users. within the open-ended job description, respondents frequently referred to the age of people using slt services, with a dominance of paediatric clients reported, consistent with the descriptive data. health-related conditions respondents were asked to consider the types of health-related conditions experienced by pwcd accessing slt services and to rank how commonly people with these conditions accessed services on a five-point likert scale. the range of conditions included in the survey were based on the observations and clinical experience of the researchers working in the region and explored during pilot testing. open categories were included to allow respondents to represent conditions that were not covered by predetermined categories in the survey. results are ranked in table 5 indicating the eight most frequently reported conditions of people accessing clinical slt services and the proportion of slts who reported seeing people with this condition ‘always or often’. while the list is unlikely to be comprehensive, because of the diverse range of clients seen by slts, it provides an indication of common issues that are experienced by people who seek rehabilitation from slts in the sample. table 5: most frequently reported health-related conditions of people accessing speech and language therapy services. within the open-ended job description, respondents frequently reported seeing people with a variety of different health-related conditions. ‘i see all patient groups as they come, cannot afford to specialize in this kind of work setting where the service is limited.’ (id e004, ngo/voluntary) economics of services respondents were asked to indicate if direct payment was required for clients to receive slt services or if services were free at the point of use. respondents indicated that almost two-thirds (64%) of clients directly paid for slt services at a level perceived by the therapist to be commensurate with private or commercial rates. the remainder were noted to pay either a small or subsidised fee (18%) or to receive a service free at point of use (18%). payment levels, by funding sector, are outlined in table 6. table 6: perceived rates of payment, by funding sector. roles of speech and language therapists a broad range of work-related roles were described by respondents within the open-ended job descriptions. the categories of roles following qualitative content analysis and examples of the types of activities described are provided in table 7. table 7: speech and language therapists: role categories and examples. training others respondents were asked to specify the amount of time they spent training people who were not parents, carers or relatives of clients. of the 27 responses, the largest proportion (n = 12) estimated they spent less than 10% of their time on training others (44%). however, over one-quarter of respondents (n = 7) indicated they spent 25% or more of their time training in the workplace (figure 2). within the open-ended descriptions of training, participants indicated that they had trained a variety of workers across sectors in the previous 12 months (table 8). figure 2: proportion of time at work spent training others. table 8: examples of groups trained by speech and language therapists. ethical considerations the university of queensland, australia, where the first author was enrolled as a doctoral student at the time of the study development, granted ethical approval for this project (reference number 2011-somilre-0018). informed consent was inferred via survey response. secure sockets layer technology was used to protect online survey data. discussion this paper reports data from a survey of the work of slts in ssa on employment patterns, position funding, characteristics of clients and activities undertaken by slts. overall, private and not-for-profit sectors were the largest employers of slts in this sample. african nationality respondents were most frequently employed within the private sector, while non-african nationals were most frequently employed in the not-for-profit sector. as the profession of slt grows in ssa, not-for-profit organisations may consider recruiting slts differently from current models of volunteerism (see hickey et al. 2012). rather than importing foreign volunteers, they may have capacity to offer longer term employment to locally based slts, which improves potential for service stability and language mix needed for culturally appropriate services (wylie et al. 2016). part-time and temporary roles dominated the sample. less than half of roles described (41%) were fulltime and less than half of relevant jobs (39%) were reported as permanent. while government jobs were limited, they appeared to offer more stability, with the majority of these roles reported as permanent. further investigation around whether employment patterns reflect job availability or employee preference is required. the dominance of part-time and temporary roles prompts questions about service sustainability. workforce stability has been shown to benefit both the service and the client as it contributes to both improved productivity and skills (auer, berg & coulibaly 2005; buchan 2010). the high rate of temporary roles, coupled with use of a foreign (non-african) workforce with high turnover (wylie et al. 2016), indicates that many of the slt services available may not be stable. establishment of stable, permanent jobs for the growing local workforce is essential if slt is to contribute meaningfully to communication disability services in the region. the availability of stable jobs for slts is particularly important with the increasing number of training programmes for slt in ssa (wylie et al. 2016). unless a system of stable jobs is available for slts who train in ssa, training programmes may produce graduates who remain unemployed in the field, migrate out of the region to seek stable employment, change profession, or self-employ through private practice. governments have a key role to play in disability, including strategy, policy, regulation, resourcing and delivery of rehabilitation services (world bank & world health organization 2011). the lack of slt roles in the government sector is multifactorial. historically, because of a range of policy and economic issues, african governments have struggled to employ and retain health workers or invest sufficiently in health infrastructure (anyangwe & mtonga 2007). with recent growth in local slt training (wylie et al. 2016) increasing the size of the workforce for communication disability rehabilitation, it is unsurprising that positions are lagging behind in government services. if governments in ssa are to ensure a stable, equitable and accessible range of rehabilitation services for communication disability, then it is important to consider how the workforce with skills in communication disability, including slts, should be employed and what it will take to drive such a change. substantial activism may be required to produce policy shifts that prioritise communication disability and establish slt roles in the government sector (wickenden 2013; wylie et al. 2013). the majority of slts (62%) reported that they did not have a slt colleague within their workplace. as the profession grows, how slts are supervised, mentored and supported to enable continuous learning and service quality requires consideration. slts reported working in multidisciplinary contexts and reported a wide range of multidisciplinary team members, which may provide some level of generic support in continuous learning. lack of professional support and supervision has implications for performance of the workforce (mathauer & imhoff 2006; willis-shattuck et al. 2008). potential for career progression into more senior positions has also been shown to impact the motivation of the workforce (willis-shattuck et al. 2008). the development of appropriate support systems and career pathways may contribute to a robust and motivated workforce. slts reported engaging in a wide variety of roles within their work, including the provision of direct therapy as well as roles including inclusion support, capacity building and awareness raising, which may reflect a broader role than traditionally seen in slt (wickenden 2013). one of the most common categories in the description of work roles was training others. respondents reported training a diverse range of people across sectors. the sector in which slts are employed may influence the type of roles slts undertake, including working in areas such as training others, advocacy and awareness raising. broader roles for slt may be more constrained in the private sector, where the focus is likely to be on the provision of treatment to individuals. training appeared to be a key role for the slts in this sample. widespread training by slts in ssa has the potential to support models of rehabilitation that use less specialised service providers, such as mid-tier health workers and cbr workers. the ability of slts to train and capacity build with others has been recognised in the literature on development of services for communication disability in the majority world as essential (hartley & wirz 2002; robinson et al. 2003; winterton 1998). calls to improve the formal training systems for cbr workers (mannan, maclachlan & mcauliffe 2012) offer a timely opportunity to reconsider the roles for a profession such as slt in majority world contexts, which may differ from those in the minority world. the dominance of training in job descriptions of slts suggests that they may be well placed (and already engaging) in supporting training in communication disability. this is critical in light of the recognition of the lack of training for cbr workers in this area (world bank & world health organization 2011). using slts – who possess specialist skills in communication and swallowing disabilities – to train and support cbr workers, and other health and education workers, has the potential to both increase the coverage of communication disability rehabilitation and improve networks between health-related rehabilitation and cbr (maclachlan, mannan & mcauliffe 2011; mannan et al. 2012; nganwa et al. 2013; world bank & world health organization 2011). slts reported providing services to a range of people with communication disabilities, including people across the lifespan and with a range of health-related conditions. the focus of services appeared to be predominantly in paediatrics, although respondents reported seeing clients across the age ranges. the most frequently reported health-related conditions of people seeking slt services were speech or language delay or disorders, autism spectrum disorder, physical disabilities and intellectual disabilities. the data indicated that many of the slts sampled work across a range of areas in a generalist approach, in contrast to countries of the minority world, where services and systems are well developed and therapists often work in specialised or specific areas of practice. the generalist nature of the roles described in this sample, with slts working in both adult and paediatric populations, and across different health-related conditions, indicate that slts require a diverse range of support to maintain and grow skills through continued professional education. creating alternative networks of support and supervision to meet the needs of slts working with diverse caseloads is particularly important as the majority of respondents reported being the only slt in their workplace. services provided by slts in the sample were largely provided in urban areas with limited services in rural communities. this is consistent with the maldistribution of the health workforce between rural and urban settings in ssa (anyangwe & mtonga 2007) and represents a geographical barrier to slt service access (peters et al. 2008). the cost of services has been shown to be one of a range of barriers to accessing health services (commission on social determinants of health 2008; mills et al. 2012; peters et al. 2008), particularly when repeated or expensive treatments are required (ansah et al. 2009; james et al. 2006), such as in the case of rehabilitation services. almost two-thirds of slt service users were reported to pay fees commensurate with a private level of service. payments at this level were reported across private, government and not-for-profit employment sectors; however, the small amount of data was suggestive of government slt services levying lower direct costs to pwcd. this requires further exploration as costs of services may present an economic barrier to equitable rehabilitation (peters et al. 2008). while governments in majority world countries are challenged in financing rehabilitation (world bank & world health organization 2011), creation of slt roles in sectors with free or low-cost services or models of coverage for pwcd is essential to promote equity of access to rehabilitation. as slt training programmes develop, if graduate slts are siphoned into a system of private practice, possibly contributed to by a lack of government jobs, there is a risk of further promoting inequality, where more affluent urban residents are disproportionately able to access slt services. lack of access to rehabilitation may have long-term implications for people with communication disabilities as communication disability may limit the ability of an individual to maximise his or her social and economic independence (ruben 2000). limitations of the study this is an initial exploration of the slt workforce with limited data. non-probability sampling methods and a small sample size limit the ability to generalise results. selection bias was likely, as despite the use of multiple response modalities, respondents may have been more likely to respond if they had access to technology or were more connected in the international or local communication disability networks. however, this study offers an early exploration of a sample of the workforce and consideration of important factors of relevance to the profession in the region. conclusion speech and language therapy is beginning to grow in ssa with the development of local slt training programmes (wylie et al. 2016). it is timely to reflect on how the profession of slt could and should be organised in ssa, particularly if the aim of expanding the profession is the development of sustainable and equitable communication disability rehabilitation services. this research presents the workforce profile of a sample of slts in ssa by describing their employment patterns, selected characteristics of people receiving slt services and work roles. services provided by slts were provided to pwcd across age ranges, health conditions and settings, with paediatric, urban services commonly reported. training was a commonly reported role for slts in the sample. consideration of employment, work and service factors has raised a number of issues around how slts are employed and work in the region, which may impact service sustainability and accessibility. while this research has provided initial insights into the role and employment of slts and indications of who receives services in the region, much more extensive debate and research is required to consider how the work of slts in ssa should be structured and supported. reconsideration of the role of slts is needed to ensure that slts contribute to sustainable and accessible communication rehabilitation in a way that is responsive to the rehabilitation needs of people in ssa. acknowledgements the authors thank the participants for their generous commitment of time in contributing to the lengthy survey. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions k.w. was the principal researcher on the project as 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geneva. wylie, k., mcallister, l., davidson, b. & marshall, j., 2013, ‘changing practice: implications of the world report on disability for responding to communication disability in under-served populations’, international journal of speech-language pathology 15, 1–13. https://doi.org/10.3109/17549507.2012.745164 wylie, k., mcallister, l., davidson, b. & marshall, j., 2016, ‘communication rehabilitation in sub-saharan africa. a workforce profile of speech and language therapists’, african journal of disability 5, 13. https://doi.org/10.4102/ajod.v5i1.227 wylie, k., mcallister, l., davidson, b., marshall, j. & wickenden, m., 2012, ‘overview of issues and needs for new slp university programs in developing countries’, paper presented to the east african conference on communication disability, kampala, uganda, 12–15 january. abstract introduction methods ethical considerations results treatment effects discussion conclusion acknowledgements references about the author(s) ameer s.j. hohlfeld cochrane south africa, south african medical research council, south africa michal harty department of health and rehabilitation sciences, university of cape town, south africa mark e. engel department of medicine, university of cape town, south africa citation hohlfeld, a.s.j., harty, m. & engel, m.e., 2018, ‘parents of children with disabilities: a systematic review of parenting interventions and self-efficacy’, african journal of disability 7(0), a437. https://doi.org/10.4102/ajod.v7i0.437 note: this article is based on my mini-dissertation submitted to the health science faculty of the university of cape town in partial fulfilment of the requirements for the degree of master in public health. review article parents of children with disabilities: a systematic review of parenting interventions and self-efficacy ameer s.j. hohlfeld, michal harty, mark e. engel received: 22 sept. 2017; accepted: 23 mar. 2018; published: 17 oct. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: an increasing body of empirical evidence suggests that early intervention has positive outcomes for parents of children with neurodevelopmental disabilities. parental self-efficacy has been used as an outcome measure in some empirical studies; however, there is a lack of evidence of the impact of parent training programmes on parenting self-efficacy beliefs. objectives: this systematic review sought to assess the effectiveness of parenting interventions to increase parental self-efficacy levels in parents of young children with neurodevelopmental disabilities. method: we conducted a broad literature search, which included grey literature, such as dissertations and unpublished conference presentations, to identify all relevant prospective studies reporting on our study objective. articles were selected for inclusion using predefined criteria and data were extracted onto a purposely designed data extraction form. twenty-five articles met our search criteria. we extracted parenting self-efficacy scores before, and on, completion of parenting interventions and performed a meta-analysis using standardised mean difference. we also conducted a risk of bias assessment for all the included studies. results: parent training programmes resulted in a statistically significant increase in parental self-efficacy levels (standardised mean difference, 0.60 [95% confidence interval {ci}, 0.38–0.83]; i2, 74%) relative to baseline measurements. parents of children younger than 5 years demonstrated the highest increase in levels of parental self-efficacy after parenting interventions. furthermore, this review showed that psychologists and other healthcare practitioners are successfully able to implement training programmes that enhance parenting self-efficacy. conclusion: parent training programmes are effective in increasing parental self-efficacy in parents of children with neurodevelopmental disabilities. introduction an increasing body of empirical evidence suggests that early intervention has positive outcomes for parents of children with neurodevelopmental disabilities (guralnick 2017). early intervention leads to an increase in developmental, social and functional outcomes for children (dunst 2007; guralnick 2017). furthermore, there are numerous psychosocial benefits for parents, including an increase in parental empowerment, a decrease in parental stress and the improvement of parental self-efficacy (pse) levels (barlow, coren & stewart-brown 2002). consequently, lack of access to early intervention has been proposed as one explanation for why lowand middle-income (lami) countries have fallen short of effectively addressing millennium development goals relating to child health (samuels, slemming & balton 2012). in addition, many lami countries lack sufficiently skilled health practitioners to initiate and sustain such early interventions (einfeld et al. 2012; samuels et al. 2012). parents have an important role to play in a child’s psychosocial development (kagan 1999). consequently, a number of parenting interventions for families of young children with neurodevelopmental disabilities have been designed and evaluated globally over the past few decades (kaminski et al. 2008; salas & cannon-bowers 2001). these interventions are designed to improve a parent’s ability to successfully parent their children, through training, support or education, and the main goal is to influence the parent’s psychosocial well-being (mejia, calam & sanders 2012). the majority of these programmes consist of skills training, parent education, parent support and/or parent coaching, and as a result they are said to be focused on the provision of knowledge (parent support) or techniques (parent-mediated intervention) (bearss et al. 2015). the primary aims of these interventions are to reduce the impact of the challenges faced by the family of children with disabilities through teaching parents new knowledge and skills to reduce the child’s behavioural, emotional and developmental difficulties (reichow et al. 2013). the methods of delivery of such training may include large seminar delivery, small group programmes and individual coaching sessions. the formats include telephone-assisted programmes, face-to-face programmes, self-directed programmes and online parenting programmes. the effectiveness of these programmes is not solely reliant on the delivery methods utilised, or content taught, but rather on the types of activities that are incorporated into the programmes (kaminski et al. 2008; woods et al. 2011). according to kaminski et al. (2008), intervention teaching methods that included practising new skills with their own child and role play demonstrated the greatest effect size. through these types of teaching activities, parents are taught intervention techniques that can be incorporated into their daily routines. this makes the impact of the intervention more sustainable compared to clinician-implemented interventions (sanders & kirby 2012; strauss et al. 2013). researchers with a focus on the psychosocial development of children with developmental disorders indicate that pse may have an important role to play in the development of a child (coleman & karraker 2003; jones & prinz 2005; kendall & bloomfield 2005; montigny & lacharité 2005). the pse construct is primarily grounded in bandura’s social-cognitive theory and has been defined as the belief in one’s own abilities to arrange and carry out tasks or actions to yield a specific achievement (bandura 1977; 1989; 1997; bandura & walters 1977). a high level of pse will cause parents to think and act in ways that will optimise the developmental outcomes of their children (reichow et al. 2013). in other words, parents who face numerous stressors, but have high levels of pse, are still able to facilitate positive developmental experiences for their children (elder 1995). consequently, developers of parenting interventions have paid considerable attention to the mechanisms whereby pse beliefs can be enhanced (bloomfield & kendall 2007; hudson et al. 2003; jones & prinz 2005; sanders & woolley 2005). there are four primary methods in which self-efficacy can be modified (bandura 1989). these methods serve to either enhance or decrease perceived levels of pse. the first and most important method is that of enactive mastery (personal) experience. this results from prior accomplishment in certain activities. enhancing pse levels is thus achieved by allowing parents to experience success in situations that they previously found challenging (bandura 1977). a second, likely method for improving personal self-efficacy is through the use of vicarious experiences. the individuals learn by observing challenging activities carried out by competent models, allowing them to re-evaluate their own mastery capabilities in relation to similar challenges they would encounter. it is especially useful when individuals see themselves as being similar to the observed model (bandura 1997). thus, having group discussions with other parents facing similar challenges, or watching videos or live parent models carrying out challenging tasks, are activities that may enhance pse levels. a third mechanism to improve self-efficacy beliefs is the use of verbal and social persuasion, whereby others provide informed verbal feedback of an individual’s capabilities pertaining to a certain task (bandura 1997; woods et al. 2011). encouragement from others is believed to be useful in improving self-efficacy and skill, whereas discouragement has the opposite effect (bandura 1986). within parenting programmes, feedback or coaching from the interventionists may provide this source of modification. the fourth way self-efficacy beliefs can be modified is through emotional and physiological arousal. parents may experience stressful physiological responses that include increased stress, anxiety and/or fatigue, which make it harder to experience success (bandura 1986). therefore, reducing negative emotional arousal to subjective fears (through increased knowledge or skills, or access to necessary formal and informal support) would subsequently enhance performance and improve perceived self-efficacy (bandura 1986). figure 1 is a visual representation of common intervention activities and how they may influence self-efficacy beliefs. however, as programmes typically aim to decrease stress as an outcome for their intervention, based on the cumulative benefits of the other activities rather than the inclusion of a specific intervention activity (like mindfulness), this modifier is not included in figure 1. figure 1: parental self-efficacy sources frequently used in parent training programmes. to our knowledge, there have been no systematic reviews of randomised controlled trials (rcts) to assess the effects of parent training interventions on pse for parents with young children that have neurodevelopmental disabilities. through a systematic review of existing studies the primary objective was to assess the immediate change in pse levels following parent training programmes for parents in the intervention arms of the included studies. the secondary objectives were to compare the change in pse levels: for interventions directed at parents of children younger than the age of 5 years and studies directed at parents of children 5 years and older, for trademarked or copyrighted interventions and those without licencing, for studies administered by a psychologist and those that were implemented by other healthcare practitioners, and to conduct a moderator analysis (assess heterogeneity) and risk of bias assessment to compare the treatment effects across the different kinds of parent training programmes. hypotheses we hypothesised that there would be a significant positive effect size for pse levels when combining all included studies. furthermore, we predicted a larger effect size associated with licenced interventions than non-licenced interventions, as well as greater gains in pse levels in studies targeting parents of children younger than 5 years of age compared to those targeting parents of children older than 5 years. typical developmental milestones are well documented for children from 0 to 5 years. consequently, skills-based parent training for parents of children with neurodevelopmental disabilities typically focus on teaching parents to facilitate their child’s development, using these milestones as guidelines. however, from age 5, many children in developed country contexts will be following a more academic curriculum in their educational context rather than a developmental curriculum. parent training for this group of parents often targets a wider range of topics. consequently, we hypothesised that the more focused programmes targeting parents of young children under five would have a greater impact on pse than the programmes for parents of school-aged children, which are more heterogeneous in content. given the multidisciplinary nature of early intervention services in developed country contexts and the nature of the activities that enhance pse (see figure 1), we hypothesised that any member of a multidisciplinary team should be able to implement a parent intervention that would enhance pse. methods eligibility criteria studies selected for this review needed to meet the following inclusion criteria: the study needed to be an rct using parent training interventions for parents with children diagnosed with neurodevelopmental disabilities. caregivers needed to be biological parents of children (aged between 0 and 10 years) with established neurodevelopmental disabilities, including, but not limited to, an autism spectrum disorder (asd), cerebral palsy, down syndrome, multiple and/or significant disabilities and attention deficit hyperactivity disorder (adhd), which is now included in the dsm-5 as a neurodevelopmental disability). the parenting skills needed to parent a young child will differ from those needed to parent a preadolescent. preadolescence is generally defined as the period between 10 and 13 years of age. consequently, we set the upper limit for child’s age to 10 years. interventions needed to address elements of a child’s psychosocial development through parent support, training, education and/or coaching. the control groups needed to receive either no intervention or care as usual. programmes needed to report on parental outcomes that fell under the pse construct (we included the terms ‘parental competence’ and ‘parental confidence’ under this construct). the study needed to state the means, standard deviations and sample sizes in the publication or in response to a request made to the corresponding author of the publication. studies were excluded if: pse levels were not measured, wrong study design, children were too old, wrong or no neurodevelopmental disability, intervention not described, full-text articles were not accessible to the researchers and/or corresponding authors were unable to provide data in time. search strategy relevant studies were obtained using various strategies; an example of the search strategy used can be found in the appendix. two authors, ameer hohlfeld (a.h.) and michal harty (m.h.), extensively searched databases, without any language or time limitations. an updated search was conducted in august 2017. the databases searched were embase, psycinfo, pubmed, academic search premier, africa-wide information, cumulative index to nursing and allied health, education resources information center, health source (consumer edition), psycarticles, google scholar, dissertation abstracts international, and the cochrane library (cochrane database of systematic reviews, cochrane central register of controlled trials and cochrane methodology register). using unlimited truncation characters for each database, we used the following search strategy after determining key medical subject heading terms for each of the inclusion criteria. we supplemented the above searches with a manual search of google scholar and other grey literature sites. in addition, we searched reference lists of included studies to identify any missing articles, abstracts and conference proceedings, which we then requested from the authors. a.h. then revised all relevant material obtained from the search. after reading the titles and abstracts of the identified studies, we retrieved the full-text studies for every citation potentially meeting inclusion criteria. both a.h. and m.h. revised the full-text articles using a predesigned study eligibility form to decide on the inclusion status (figure 2). figure 2: preferred reporting items for systematic review and meta-analyses (prisma) flow chart presenting the documentation and selection of included studies in the systematic review. data extraction a.h. and m.h. independently extracted the data using a homogenous data extraction form, which they then cross-checked. m.e. settled discrepancies through discussion where necessary. information extracted from the studies included country in which the study was conducted, study design, sample size, child diagnosis, mean age of the child in years and standard deviation, target parent participating in the intervention, name of the parenting intervention programme, coach or trainer administering the intervention and the tool used to measure pse. we extracted means, standard deviations and sample sizes for each relevant intervention group measuring pse for the analysis. only the baseline scores and first recorded post-intervention pse scores were extracted. where possible we only extracted pse scores from studies using standardised interventions if the study also tested modified or enhanced versions of the interventions. data analysis the standardised mean difference (smd) was used to assess the overall change in pse levels because studies used different scales to measure the mean change in pse levels (higgins 2009). we calculated the i2 statistic for each analysis as a measure of the proportion of the overall variation that is attributable to between-study heterogeneity (hozo, djulbegovic & hozo 2005). data were analysed using review manager 5.3 (the cochrane collaboration 2014). the outcomes (pse, parenting competence, parenting confidence) were considered as continuous variables. in addition, meta-analyses were performed on each of the subgroups. where significant heterogeneity was found, the random-effects model was used. for the pse measures, some studies combined the subscales scores producing a parenting sense of competence (psoc) total score (n = 7), while others reported the scores on the psoc efficacy subscale separately (n = 9). for the self-efficacy tools (such as the psoc and the parenting tasks checklist, ptc) that summed separate subscale scores into a total score, only the efficacy subscale scores were extracted. where these subscale scores were not provided, we used the total score for the scale. where studies evaluated more than one format of the intervention, we extracted data from the standard interventions and not the adapted formats. risk of bias the preferred reporting items for systematic review and meta-analyses (prisma) statement suggests that methods describing the assessment for risk of bias be included in meta-analyses or systematic reviews (moher et al. 2009). we individually inspected specific components in each included study for risk of bias: selection of participants for each study, sequence generation and randomisation, allocation concealment, blinding, incomplete outcome data or missing data (attrition bias), selective outcome reporting and other sources of bias. each component of the risk of bias assessment was scored as having a high, low or unclear risk of bias according to established methods (higgins & altman 2008). in the event of a disagreement between a.h. and m.h., consensus was determined through consultation and discussion with m.e. ethical considerations ethics approval is not required for this study, given that systematic reviews draw on secondary publicly available data from published studies. results description of studies we obtained 1624 titles and abstracts from electronic databases and trial registries. an additional 53 references were found through manually searching the reference lists of included studies. for two of these the full-text version could not be accessed and the authors were thus contacted. therefore, a total of 1677 studies were retrieved and, once duplicate studies were removed, 456 studies remained. a further 356 articles were excluded based on examination of title and abstracts, after which 100 articles were potentially eligible for inclusion, pending full-text assessment. a native french speaker translated a french language article. finally, 25 articles met our inclusion criteria, of which 3 studies were not published. figure 2 depicts a flow diagram of the literature search results. table 1 summarises the characteristics of the included studies. there were 1697 families who participated in the studies; the sample sizes ranged from 11 to 305. of the 25 studies, the majority of child diagnoses included adhd and/or conduct disorder or non-compliant behaviour problems (13 studies) and asd (8 studies). the remainder consisted of non-specific developmental disorders (3 studies) and cerebral palsy (1 study). it is interesting to note the lack of rcts measuring pse for conditions such as cerebral palsy, which is fairly prevalent, particularly in lami countries. table 1: characteristics of randomised controlled trials conducted globally meeting inclusion criteria. the majority of studies were conducted in australia (n = 12), with three studies conducted in the uk, two studies each in hong kong, usa and new zealand, while one study was conducted in each of the following countries: portugal, canada, netherlands and israel. the children’s ages ranged from 1 to 10 years. eighteen studies had a mean children’s age younger than 5 years, while seven studies reported a mean age older than 5 years. seven studies specifically recorded pse scores of mothers; of these, six studies directed their interventions solely at mothers. the remaining 18 studies did not specify who received the intervention and they reported combined pse scores, without stratifying the outcomes for mothers and fathers. parent training programmes were not standardised across studies. of the better-known programmes, 15 studies assessed different forms of the triple p-positive parenting program©, two studies assessed the incredible years basic parent training programme, one tested the parent-administered version of the early start denver model and one tested project impact (improving parents as communication teachers). the remaining six studies trialled less commonly known interventions. twenty-three studies had copyright or trademark licences for the interventions employed in the study. furthermore, the interventions were administered either by psychologists (n = 12) or by healthcare or education practitioners (n = 13). these professionals included nurses, special education teachers and allied health professionals (such as speech and language therapists, occupational therapists and social workers). the pse levels were assessed using different measures: 17 studies used the psoc, four studies used different formats of the ptc and the remaining four studies employed less commonly utilised pse assessment tools. treatment effects summative parental self-efficacy measures (25 studies) as displayed in figure 3, compared to baseline measurements, parent training programmes resulted in a statistically significant increase in pse levels across all studies, irrespective of assessment tool employed (n = 683; smd, 0.60 [95% confidence interval {ci}, 0.38; 0.83]; i2 = 74%). table 2 displays the summative results including those from the subgroup analyses. figure 3: random effects meta-analysis of the summative effects of parent training programmes on parental self-efficacy levels. table 2: summative parental self-efficacy outcomes and the subgroup analyses. subgroup analysis parental self-efficacy according to children’s ages studies were stratified according to the mean ages of children in each study (figure 4). parents of children aged 5 years and older showed that the intervention had no statistically significant effect on pse (n = 160; smd, 0.34 [95% ci, –0.35; 1.03]; i2 = 88%). by contrast, parents of children younger than 5 years showed a statistically significant increase in pse levels, thus favouring the intervention (n = 523; smd, 0.70 [95% ci, 0.50; 0.89]; i2 = 54%). figure 4: random effects meta-analysis of the summative effects of parent training programmes according to child age. intervention type studies were stratified according to whether they incorporated copyright or trademark interventions compared to non-licenced interventions (figure 5). copyright or trademark interventions showed a statistically significant effect for enhancing pse levels (n = 669; smd, 0.65 [95% ci, 0.43; 0.88]; i2 = 74%). in contrast, non-licenced interventions were ineffective for enhancing pse levels and had an effect that was non-significant (n = 14; smd, –0.26 [95% ci, –0.99; 0.46]; i2 = 0%). figure 5: random effects meta-analysis of the summative effects of parent training programmes according to programme type. qualification of programme administrator we considered whether studies implemented by healthcare practitioners other than psychologists showed variability in the effectiveness of the pse outcomes compared to those that were facilitated by psychologists (figure 6). healthcare practitioners administering parent training programmes showed a statistically significant effect favouring the intervention (n = 298; smd, 0.72 [95% ci, 0.49; 0.95]; i2 = 41%). where psychologists administered parent training programmes, results also showed a statistically significant effect favouring the intervention (n = 385; smd, 0.53 [95% ci, 0.16; 0.90]; i2 = 84%). figure 6: random effects meta-analysis of the summative effects of parent training programmes according to professional delivering the intervention. we used moderator analyses to assess the percentage of variability in the effect sizes across the parent training programmes for pse in each subgroup analysis that was present. when exploring heterogeneity of the summative assessment for pse measures, a substantial percentage of heterogeneity was present (i2 = 74%). removing the study by whittingham et al. (2009) reduced the heterogeneity to i2 = 52% and resulted in an increase in the effect size (n = 654; smd, 0.70 [95% ci, 0.53; 0.87]; i² = 52%). in this study, 12 of the 29 children were diagnosed with asperger’s syndrome, which may have resulted in children in this sample possessing relatively strong language abilities and milder difficulties with social interaction as compared to children with a diagnosis of asd. furthermore, 17 of the 29 parents did not seek help for their child’s emotional or behavioural problems, which suggests that these parents may have experienced relatively less stress than parents of children with asd. removing this study from the analysis meant that the remaining parents were a more homogenous group. a graphical representation of the risk of bias assessments is presented in figure 7. components assessing bias included blinding, allocation, incomplete outcome data, selective reporting and other potential sources of bias. the components were rated as being adequate, inadequate or unclear (higgins 2008). the majority of the studies provided limited information regarding aspects of selection [specifically allocation concealment and sequence generation (randomisation)]. all of the included studies had a control group that consisted of no treatment or treatment as usual; therefore, blinding of participants to group allocation was not possible. consequently, blinding of participants and personnel was the aspect that carried the highest risk of bias in the studies included in this review. figure 7: risk of bias assessment for included studies according to cochrane risk of bias tool. discussion this systematic review found evidence for parent training programmes being effective in enhancing parental pse levels. this finding was statistically significant and thus we are able to conclude that pse is a robust parent outcome measure to evaluate the effectiveness of parenting programmes. parental self-efficacy levels had a significant increase and large effect size (d = 0.60) for parents of children younger than 5 years of age, irrespective of the children’s diagnosis in the studies. thus, data suggest that training parents of younger children are more beneficial in improving pse outcomes than training initiated after the child is 5 years of age. the authors think that this may be because the skills taught to parents of younger children are based on developmental principles and consequently have a more direct impact on the developmental outcomes of children than skills taught to older parents. parents who can see the positive impact that their newly acquired skill has on child outcomes would potentially be more likely to increase their belief (pse) that they are able to provide the support that their child needs. these findings corroborate the increasing body of empirical evidence documenting the beneficial effects of early intervention on both parents’ and children’s outcomes (guralnick 2017). these findings correspond to an earlier model that shows that heightened levels of pse lead to subsequent heightened levels of success in the child (ardelt & eccles 2001). thus, parenting programmes that increase pse levels may also indirectly promote positive child outcomes (ardelt & eccles 2001; coleman & karraker 2003). parent training programmes were shown to be effective irrespective of whether they were administered by psychologists or other healthcare professionals. this finding may be of particular relevance in certain developing country contexts that do not have well-established professional training programmes for medical and allied health professionals and consequently may graduate a limited number of healthcare professionals on an annual basis. task shifting has been suggested as a way to maximise access to interventions in contexts where there is a scarcity of trained professionals (flisher et al. 2010; rahman et al. 2008). in addition, there is an emerging body of evidence to suggest that alternative cadre professionals, such as rehabilitation care workers or community-based carers, are also able to effectively deliver parent training programmes (flisher et al. 2010; rahman et al. 2008; reichow et al. 2013). finally, we wish to discuss the substantial amount of heterogeneity for the primary outcome measure. we employed the random-effects model throughout the analyses to account for this; however, in this meta-analysis, heterogeneity was particularly affected by one study. when removing the study by whittingham et al. (2009), heterogeneity decreased considerably (the i2 value decreased from 74% to 52%) and the effect size increased. heterogeneity in this study may also have been attributable to the high risk of performance and detection bias present in this study. alternatively, we propose that the high number of children with asperger’s syndrome (12 out of 29) included in this study compared to the other included studies may have affected the heterogeneity. characteristics of children with asperger’s syndrome include relatively strong language abilities and milder difficulties with social interaction relative to children with a diagnosis of autism. we used the risk of bias tool as per prisma recommendation (moher et al. 2009). areas of bias that were underreported included performance bias, detection and attrition bias, including allocation concealment. authors should pay attention to how they report participant selection and randomisation procedures, as well as how they report incomplete outcome data. these biases should be carefully considered in the design and implementation of future rcts involving parent training programmes. while there have been systematic reviews supporting the effectiveness of parent training programmes for parents of children with neurodevelopmental disorders, such as skotarczak and lee (2015) as well as tellegen and sanders (2013), this review is the first to evaluate the effect these interventions have in changing the pse levels. no language limitations were set and articles not written in english were translated and included if they met the inclusion criteria. furthermore, when investigating parent training programmes we chose to include all forms of parent training, rather than selecting specific programmes as other systematic reviews, such as tellegen and sanders (2013), have previously done. it is interesting to note that non-licensed interventions were ineffective in enhancing pse levels. the authors postulate that licenced interventions have undergone a more rigorous development process than non-licensed interventions. this may result in stronger theoretical underpinning relating to both the development of the content and intervention activities, as well as a more detailed process of stakeholder engagement. this finding creates an interesting tension for researchers in lami settings interested in designing parent training programmes. licensed interventions may be better at enhancing pse, but they are not always contextually relevant and may need to be adapted to be socially acceptable in developing country contexts. limitations of the study one limitation of this review was the challenge we experienced in our efforts to provide summative estimates of the effectiveness of parent-based interventions, because of the varied nature (and poor description) of the different parenting interventions. in addition, numerous sources of bias were identified such as the fact that intention-to-treat analysis was not regularly used, which resulted in high levels of heterogeneity. we also acknowledge that these results only include pse changes directly after intervention and do not include follow-up measurements of pse. furthermore, we acknowledge that our decision to include adhd in this analysis of children with neurodevelopmental disabilities may receive criticism. however, recent research continues to highlight that adhd and asd share over 50% of their genetic factors (van steijn et al. 2012) and that two-thirds of individuals with adhd display features of asd (mulligan et al. 2009). in this review, we collected pse data that was measured subjectively using self-administered questionnaires. nevertheless, self-report is typically the way in which this construct is measured in the field (wittkowski et al. 2017). lastly, it is still evident that none of the included studies was conducted in a lami country. as researchers in a developing country context, we view this as a significant constraint given the number of families in lami countries who have a child with a neurodevelopmental disability. einfeld et al. (2012) conducted a review of interventions provided by parents. however, the authors feel that a systematic review of all of the caregiver skills-based interventions available in lami country contexts (irrespective of study design) would be helpful to obtain a clearer understanding of the existing evidence base and future research directions. implications for practice the results of the current systematic review present evidence that parent training programmes have a significant effect on the enhancement of self-efficacy levels for parents of children with neurodevelopmental disabilities. the data offers three insights for healthcare providers who provide parent training. this review suggests that parents of children younger than 5 years of age are most likely to report a change in pse levels following parent training. secondly, data from this review confirm licenced interventions to have greater benefits to pse than non-licenced interventions. this is not surprising as interventions with copyrights or trademark licencing have traditionally been developed and refined over several years, and their development is usually supported by published evidence of their efficacy. the final clinical implication is that healthcare practitioners other than psychologists are successfully able to implement training programmes that enhance pse. for those researchers who are interested in service delivery in developing country contexts, this finding is particularly important, given the dearth of suitably trained healthcare practitioners in lami settings able to provide children diagnosed with neurodevelopmental disorders, and their families, with appropriate care. conclusion as researchers within an african context, we recognise the need to pilot the efficacy of parenting interventions to change pse levels in a lami context since, by the middle of this century, 40% of the world’s population of children will live in africa (you et al. 2014). it is well known that africa, as a continent, has limited access to resources and services to promote the health and development of its children. therefore, it is important to consider how to reach the families of children with neurodevelopmental disabilities in these resource-constrained contexts. consequently, we suggest that future research builds on this evidence base, which indicates that parents can be effectively trained by psychologists and allied health practitioners, by examining the effects of parent training provided by alternative cadre professionals. acknowledgements the authors gratefully acknowledge the contributions of ms. anke rohwer and ms. syntia nchangwi in translating non-english articles to english. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.h. conceptualised the study and all authors were responsible for designing the protocol. a.s.j.h. and m.h. 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child psychology 37, 469–480. https://doi.org/10.1007/s10802-008-9285-x wittkowski, a., garrett, c., calam, r. & weisberg, d., 2017, ‘self-report measures of parental self-efficacy: a systematic review of the current literature’, journal of child and family studies 26, 2960–2978. https://doi.org/10.1007/s10826-017-0830-5 woods, j.j., wilcox, m.j., friedman, m. & murch, t., 2011, ‘collaborative consultation in natural environments: strategies to enhance family-centered supports and services’, language speech and hearing services in schools 42, 379. https://doi.org/10.1044/0161-1461(2011/10-0016) you, d., hug, l. & anthony, d., 2014, generation 2030/africa, unicef, new york. abstract introduction research method and design results discussion recommendations and conclusion acknowledgements references about the author(s) nicola l. o’kelly department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa jean v. fourie department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa citation o’kelly, n.l. & fourie, j.v., 2023, ‘journeying with developmental coordination disorder: the family experience’, african journal of disability 12(0), a1210. https://doi.org/10.4102/ajod.v12i0.1210 original research journeying with developmental coordination disorder: the family experience nicola l. o’kelly, jean v. fourie received: 20 mar. 2023; accepted: 25 oct. 2023; published: 19 dec. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: developmental coordination disorder (dcd) is a neurodevelopmental disorder impacting 5% – 6% of children and continues into adulthood for 50% – 70% of cases. despite the multidomain and lifelong influence of this disorder, little consideration has been given to the experiences of the family. post-diagnostic support has been recommended however, the specific areas requiring support remain vague. objectives: this study described the familial experiences of living with a member diagnosed with dcd. method: a qualitative descriptive study using a phenomenological approach allowed insight into the lived experiences of families journeying with dcd. forty-four participants representing 8 countries participated in an online questionnaire with 12 participating in an online semi-structured interview. results: themes generated reveal that obtaining a diagnosis and navigating the healthcare and education systems can be troublesome. upon diagnosis, families tend to experience positive emotions such as relief. however, the daily challenges soon result in dominant negative emotional responses. dcd places significant financial burdens on families and impacts marital, parental and sibling relationships. families often feel isolated from their communities as dcd is poorly understood. conclusion: dcd places families at risk as daily struggles require support which targets identified motor, cognitive, academic and emotional challenges. creating awareness in society, education and healthcare would alleviate continual frustrations. contribution: this study provides insight into the wide-ranging impact that dcd has on families so that individualised support can be tailored, and general awareness raised. keywords: developmental coordination disorder; dyspraxia; neurodevelopmental disorder; family support; phenomenological study; qualitative research; family burden; occupational therapy; educational psychology. introduction developmental coordination disorder (dcd), often referred to as dyspraxia, is a neurodevelopmental disorder (american psychiatric association [apa] 2022). despite the 5% – 6% prevalence among school-going children (apa 2013), children with dcd often find themselves overlooked or misdiagnosed (farmer, echenne & bentourkia 2016; missiuna et al. 2007). although dcd is classified as a neurodevelopmental disorder, it is estimated that 50% – 70% of children with dcd continue to experience difficulties into adolescence and adulthood (blank et al. 2019). the aetiology of this disorder remains unclear (brown-lum & zwicker 2015). developmental coordination disorder was first included in the diagnostic and statistical manual of mental disorders (dsm) in 1987 (dsm-iii-r) (apa 1987). the diagnostic criteria were refined in 1994 (dsm-iv) and again in the dsm-5 in 2013. the current diagnostic criteria include challenges with the acquisition and execution of motor skills that are well below what would be expected, given the individual’s chronological age and the provision of opportunity to develop the skills. these difficulties with motor coordination significantly and persistently interfere with activities of daily living, academic or vocational productivity, leisure and play. the dcd is not acquired but rather, the challenges can be tracked back to the early developmental period. it is a diagnosis of exclusion in that the motor skills deficits are not better explained by an intellectual disability, visual impairment or other neurological conditions (apa 2022). the dcd has a multidomain impact (meachon 2023) where fine and gross motor, cognitive and academic, social, emotional and behavioural challenges may be present (winson 2018). fine motor challenges may result in difficulties with dexterity, hand-eye coordination and balance (prunty et al. 2016; sadock, sadock & ruiz 2015). challenges with activities such as handwriting, cutting, eating with utensils, fastening buttons and tying shoelaces may be evident (case-smith 2005; farmer et al. 2016). deficits with motor coordination may impact speech (gaines & missiuna 2007) and result in ophthalmological abnormalities, for example, difficulty in tracking text across a page (creavin et al. 2014; rafique & northway 2015). challenges with gross motor coordination may result in difficulties perceiving, sequencing, planning and actioning movements, which may cause clumsiness (kranowitz 2005). maintaining an appropriate posture and participating in sporting activities is difficult (speedtsberg et al. 2017). the motor skill deficits may negatively impact the individual’s academic performance and social, emotional and behavioural functioning. fine motor challenges, especially those associated with handwriting and speech, may negatively impact the individual’s academic output and may result in the presentation of written or spoken work, which is not an accurate reflection of the individual’s cognitive capabilities (prunty et al. 2016). children with dcd tend to experience greater challenges with executive functioning when compared with typically developing peers (bernard et al. 2018; lachambre et al. 2021; meachon, zemp & alpers 2022). concentration challenges may also be present and appear to be related to the amount of energy required for gross and fine motor control (cermak & larkin 2002; dewey et al. 2002; farmer et al. 2016). individuals with dcd seem to be at greater risk of psychosocial challenges. this is because of dcd acting as a primary stressor, which places the individual at risk of exposure to secondary stressors as a result of interpersonal and intrapersonal difficulties (blank et al. 2019; meachon et al. 2022; sadock et al. 2015). children with dcd may find tasks challenging, which their peers find easy. as a result, each school day may be filled with frustration and disappointments, which culminate in emotional outbursts (missiuna et al. 2007). teachers identified children with dcd as displaying more emotional and behavioural challenges when compared with their typically developing peers (crane, sumner & hill 2017; van den heuvel et al. 2016). heightened levels of anxiety may also exacerbate the motor challenges (harris, purcell & wilmut 2022). as a result of the deficits applying motor and verbal skills, the playing of games is challenging, which negatively impacts the individual’s ability to participate in social leisure activities (winson 2018). children with dcd tend to rely less on technology to socialise with peers (izadi-najafabadi et al. 2019). although dcd itself does not cause social difficulties, the interpersonal challenges experienced over a prolonged time may result in decreased self-competence, anxiety and depression (saban & kirby 2019). the impact of dcd on the individual has been studied and little consideration has been given to the influence of dcd on the family (stephenson & chesson 2008) despite the challenges impacting the individual also affecting the family unit (blank et al. 2019; cleaton, lorgelly & kirby 2019; stephenson & chesson 2008). even before embarking on the diagnostic journey, parents may begin to recognise subtle differences between their child and typically developing peers (missiuna et al. 2006). unfortunately, when these suspicions are shared with medical professionals, they are often dismissed (missiuna et al. 2006). general awareness of clinicians and experience in working with dcd is low when compared with adhd (meachon, melching & alpers 2023). this may be exacerbated by the various scopes of practice, which allow for only some healthcare professionals, medical doctors and psychologists to diagnose dcd, while others such as speech and occupational therapists are not allowed to diagnose (department of health [doh] 1974, 2017, 2021; health professions council of south africa [hpcsa] 2019). however, even when a dcd diagnosis has been obtained, attempts to activate support, especially within the education systems, may be challenging (missiuna et al. 2006; winson & fourie 2020). advocating for a family member with dcd can be a time-consuming process (missiuna et al. 2006). as a result, primarily mothers may be faced with the decision to reduce their work hours or transition to a different career path with more flexibility to support their child with dcd (cleaton et al. 2019). assisting family members with motor tasks can also be time-consuming (stephenson & chesson 2008). parents may find it difficult to identify when to provide the child with dcd the opportunity to attempt the motor skill themselves or when they should support the child in the process (missiuna et al. 2006). a study that considered mothers of children with dcd found elevated levels of worry, stress, anger and frustration resulting in emotional fatigue (cleaton et al. 2019). however, fathers and siblings are also influenced (stephenson & chesson 2008). siblings may receive less parental time and attention and may experience frustration, jealousy, embarrassment or worry (cleaton et al. 2019). the individual with dcd and the family unit participate less in social activities. up to a third of families journeying with dcd find the dcd impacts on their family activity choices, holiday plans and social gatherings (cleaton et al. 2019). a parent organisation participating in the development of the clinical practice recommendations on the definition, diagnosis, assessment, intervention and psychosocial aspects of dcd identified five key areas, which would be beneficial to families. these areas included greater awareness and recognition of dcd by healthcare professions, the education system and public; improved access to services; a clear diagnostic pathway; greater information regarding therapeutic options and the effectiveness of these options (blank et al. 2019). the multidomain and lifelong impact of dcd influences not only the individual diagnosed with the condition but also the family unit. therefore, this study explored the familial experiences of journeying with dcd. research method and design a qualitative descriptive study using a phenomenological approach was utilised in order to gain greater understanding of the lived experiences of families journeying with dcd. purposeful sampling took place. parents raising children with dcd were included in the study as were adults with dcd who were able to reflect on their family’s journey with dcd. participants were not excluded if their family structure did not conform to historical views of a typical family nor were participants excluded based on the presence of co-occurring conditions. the data collection phase of this study took place during the coronavirus disease 2019 (covid-19) global pandemic while restrictions were placed on personal interactions. as a result, participants were recruited through online means. after ethical clearance was gained from the university of johannesburg, research ethics committee, an online advertisement requesting participants was placed on six social media groups, which specified that they were related to dcd or dyspraxia. the participant recruitment advertisement was shared with two social media groups associated with allied health professionals and psychologists in south africa. the online research participant advertisement included the background to the research as well as a qr code and live link to the online questionnaire. a total of 44 participants from 8 countries responded to the recruitment and completed the online questionnaire. countries represented were south africa (n = 6), the united kingdom (n = 14), the united states (n = 12), canada (n = 4), australia (n = 3), new zealand (n = 1), egypt (n = 1) and indonesia (n = 1). the questionnaire contained both forced-choice and open-ended items. the forced-choice items included questions pertaining to demographic information, the nature of the dcd within the family, the type of healthcare professional through whom a diagnosis was obtained, and the level of expertise observed in the healthcare professional. open-ended items included a description of the diagnostic process, the impact of the dcd on different family members, and the skills required to navigate the journey. participants who after completing the questionnaire desired to share further insight into their family’s journey with dcd were asked to leave their contact details so that an in-depth interview could be arranged, and 12 participants agreed to participate. the initial analysis of the online questionnaire questions provided the opportunity to make use of the semi-structured online interview to probe further issues raised through the analysis of the online questionnaires. this allowed for some key questions to be asked during all interviews as well as to ask individualised questions. the online interviews lasted approximately half an hour each. the 12 participants were numbered p1–p12 based on the order in which the interviews were conducted. an ‘i’ was used to distinguish the interview information from the questionnaire data ‘q’ during the data analysis process. the additional 32 participants were numbered p13–p44. all the 12 participants who participated in the questionnaire and interview were diagnosed with dcd, 8 had a biological son with dcd, 1 had a biological daughter with dcd and 2 had dcd themselves. one family had two members diagnosed with dcd. of the additional 32 participants who participated in the questionnaire, 26 had received a dcd diagnosis, 9 suspected dcd, 12 had biological sons with dcd, 6 biological daughters and 1 adopted daughter had dcd, and 2 fathers. twelve individuals had dcd themself. three of the families had more than one member with suspected or diagnosed dcd. during the data analysis phase, themes were developed and meaning sought from the raw data (mann 2016). the data analysis process progressed through five stages (yin 2016), which took place in a cyclic rather than a linear manner (taylor et al. 2016). the data analysis process began as soon as the data were collected. questionnaires completed via google forms were stored in excel format while the online interviews were audio-recorded and transcribed verbatim. the open-ended items from the questionnaires and the transcribed interviews were uploaded into atlas.ti (https://atlasti.com/) to assist with the disassembly and coding. codes such as ‘diagnostic process’, ‘emotional impact’ and ‘siblings’ were used to identify patterns in the data so that the unique viewpoints of the participants could be contrasted and compared (richards 2015). the data, disassembled into coded units, were then reassembled into themes (yin 2016). the coded data from each participant were pooled together according to code to analyse and synthesise the subjective views and experiences shared by the participants (morse 2017). this allowed for the interpretation of the data to occur. ethical considerations this study was approved by the university of johannesburg, faculty of education research ethics committee (nhrec no.: rec-110613-036) with ethical clearance number 2020019. a participant information sheet that included the background to the study, aims of the research, participant selection requirements and information about the researcher was produced and shared with participants. the participants were made aware of their voluntary participation in the study as well as their right to withdraw from the study at any time. audio-recorded verbal consent was obtained from participants in the online interviews, and written consent was obtained for those participating in the questionnaire. a pseudonym was used to protect the identity of each participant. results three main themes concerning the familial experience of journeying with dcd emerged through the data analysis (figure 1), namely, difficulties experienced during the diagnosis and search for support, the specific impact of the journey with dcd on the family unit, and a sense of isolation. figure 1: experiences of families journeying with developmental coordination disorder. theme 1: diagnosis and support frustrations family members usually identified symptomatic difficulties their child was experiencing before embarking on the diagnostic journey. families saw delayed milestones, challenges with fine and gross motor skill development, delayed speech development or clumsiness as the first signs of concern. however, once these concerns were raised, a common theme was ‘the experience of frustrations in the diagnostic process’. the length of time taken to obtain a diagnosis ranged from 2 to over 7 years – 2 years for 45% of the participants; 21% of the participants were only diagnosed after 5 years or longer. the length of time taken to obtain a diagnosis appeared to be related to the healthcare professional’s knowledge of dcd. one family explained that: ‘it’s bizarre to me, because we had been seeing medical professionals, since [child with dcd] was five, people who should have known. i mean, i diagnosed him off information from the internet, when he was probably seven. and then it still took another five years because they wouldn’t listen.’ (p6i1, female, usa) another parent simply stated that, ‘the health professionals have got no clue’ (p8i31, female, canada). many families found their concerns being dismissed by healthcare professionals. ‘i asked our paediatrician about it …and he kinda blew me off. he was like, “you know he’s just a laid-back kid”…’ (p1i5, female, usa). ‘so initially, they wrote it off to the fact that he is a boy, he’s a bit slower, etc.’ (p3i2, female, za). this often resulted in families feeling unheard and unsure of the next steps to take. a parent complained that ‘no one was making referrals. no one thought there was an actual diagnosable problem … only that he was “delayed” and would eventually catch up’ (p6q3, female, usa). another parent added that: ‘there seem to be few or no local experts with specific insights into the condition, so it was always a case of taking one suggested diagnosis at a time and seeing if that fit symptoms and behaviour, rather than having the condition clearly diagnosed and given steps to move forward.’ (p41q1, male, za) in addition to the frustration, parents often experienced the diagnostic process to be a period of immense stress and worry. one family stated that, ‘one of the worst feelings is knowing there is something not right with your child and, despite your best efforts, remaining undiagnosed, i worried a lot’ (p21q3, female, australia). parents were often unsure of which healthcare professional to consult. for example, ‘i wish we were sent to the developmental paediatrician first. we went to a genetics doctor first, then on our own started ot who recommended seeing the developmental paediatrician’ (p43q9, female, usa). another parent described the diagnostic process like ‘going from a to z to get to b’ (p4i21, female, uk). parents pursued the diagnostic process in the hopes that obtaining an official diagnosis would lead to the provision of much required support. however, although some families received support, the majority were unsupported as a parent stated, ‘i received a report and that was it’ (p17q2, female, uk). after receiving a diagnosis of dcd, families often found themselves having to identify the relevant support for themselves and approach the various healthcare professionals. ‘we have independently sought help from therapists, physio [physiotherapist], ot [occupational therapist], speech, audiology, psychology’ (p29q10, female, za). navigating the diagnostic process takes a toll on the family with one parent explaining: ‘a lot of these medical professionals focus on the patient but fail to take into account the family environment and what impact this has on the patient, as well as the impact of the patient’s disability on the family’ (p2q14, female, au). in addition, parents also often find themselves having to educate the healthcare professionals on the condition of dcd. one parent explained that: ‘after i got the dcd diagnosis from the behavioural therapist, i went to the paediatric neurologist. i needed to get a letter for the school to officially give him the diagnosis. i went in and i talked to the guy, and i told him, this is what i need to give to the school so we can have accommodations and it can be documented. and he says, “what’s dcd?” i say, “developmental coordination disorder”. he said, “that’s not a thing. that’s not a thing”. i was like, “it’s in the dsm 5”. i had to show him the pages. i had the pages with me’ (p6i26, female, usa). another parent explained that, ‘the amount of medical professionals i have told, “[child with dcd] has got dcd”, “oh, what’s that?” and i think well, shouldn’t you know that?’ (p2i7, female, au). instead of practitioners offering support and understanding to families, parents are educating the practitioner. furthermore, families also encounter hurdles while attempting to obtain support in the education systems. ‘even with the diagnosis the schools will very often tell you, “we won’t let them have special education or any accommodations”’ (p6i44, female, usa). these challenges with obtaining support from school tend to be associated with a lack of understanding. ‘it is not a well understood disorder, especially in schools’ (p3q11, female, za). although the diagnostic criteria for dcd (apa 2022) allude to academic challenges, focus tends to be placed on the motor coordination difficulties resulting in families finding difficulty obtaining the necessary support regarding schoolwork: ‘it was hard to make it clear with teachers and … with the school especially, that the help he needed was not just in pe with his motor skills.’ (p5i11, female, usa) another parent opined: ‘it was a struggle to get the iep because they didn’t really associate it with things they can help with at school. it was like, “you have outside occupational therapy, so what do you want us to do?”’ (p5i9, female, usa). the challenges faced by individuals with dcd in the classroom may reduce the opportunities for reaching their academic potential, ‘academically my son is gifted. but he cannot go to a school (for the gifted) because of his challenges. this frustrates him immensely’ (p32q4, female, za). some parents reported that the school did not believe the dcd diagnosis, ‘the school didn’t believe me or the ot that my daughter has dyspraxia’ (p16q, female, za). a parent explained dcd to the teachers, advocating on behalf of the child and even providing the support suggestions: ‘none of them (teachers) had any idea what dyspraxia was. a lot of times they were like, “oh, you mean dysgraphia?” well, no… once i explained that it was more motor, and not just the idea of nice handwriting. once they saw him in their classroom, and realised that it wasn’t him being lazy, he just couldn’t do it they were a little more understanding, but i was still the one who had to do the research behind it, and then give them all the prompts like, “hey, this is what we do at home?” or “how about you try this? this is what worked last year”’ (p7i7, female, usa). another parent explained: ‘the majority of teachers have no clue what it is, absolutely no idea. and i have to provide them with information about dcd. even resource teachers when it first was diagnosed, i had to get information online. i gave them websites that they could access to know what it was and what it meant for them in the classroom.’ (p11i1, female, ca) having identified their child’s symptoms associated with dcd, many families found the diagnostic process time-consuming and frustrating. thereafter, acquiring of relevant support from healthcare and education practitioners required continual advocacy and explanation. theme 2: financial, emotional and relational stress participants identified a wide-ranging impact of dcd on the family unit with significant financial stress, time spent, emotional strain and impacts on family relations. while some of the participants live in countries where education and healthcare are free, for 21 of the 44 participants, dcd and the support required as a result of the associated challenges has been a significant financial burden for the family. the cost of the supportive interventions and the extended amount of time required for implementation was reported, ‘financial (cost) has been the biggest impact’ (p5q6, female, usa). ‘we’ve spent thousands on ot and speech for over a decade’ (p12q9, female, za). a mother from australia added that, ‘with paediatric physio, ot, behavioural optometrists, paediatrician, speech pathologists – it cost a lot of money for about 10 years’ (p20q11, female, au). some families were in the fortunate position to have a parent primarily staying at home and able to provide the focused time required; for example, ‘i’m mostly a stay-at-home parent so most of the appointments and working with the iep (individual education plan) team and all of that has been me’ (p5i28, female, usa). others have chosen their career paths in order to have the flexibility to be able to provide the necessary support, ‘i’ve always structured the kind of work i’ve done around my kids’ (p8i13, female, ca). however, this can further impact the financial burden experienced by families as the amount of work hours available is decreased. some families indicate that the ability of a parent to work has been reduced by the time spent at consultations. ‘therapy sessions are multiple times per week impacting my ability to work’ (p21q10, female, au), while another stated that, ‘it has impacted me professionally, not able to work as much while trying to find help and has impacted our family financially’ (p39q4, female, usa). other families have chosen to self-support a child, which is also time-consuming and affects the availability to work, ‘financially we are committed to home-schooling… so that is a real struggle with one income’ (p28q5, female, nz). with the provision of financial support through healthcare and education, some countries have mitigated the financial burden experienced by families journeying with dcd; however, the emotional impact of this disorder on the family is draining. one mother explained that: ‘as a mum with a family that is not coping with [child with dcd’s] needs, i feel like we’re doing this solo. while the funding is amazing, i just want someone to hold my hand and help me along this extremely difficult journey.’ (p2i10, female, au) a variety of emotional responses to the dcd diagnosis were shared by the participants (figure 2). frequently, the diagnosis was met with a positive response such as understanding, relief and acceptance. the greatest negative emotion shared was associated with family members dismissing the severity of the diagnosis. figure 2: frequency of emotional responses to the diagnosis of dcd. the positive emotional responses to the diagnosis may result from the frustration and stress experienced during the diagnosis process, for example, ‘we were glad to have a diagnosis that might help inform our path to supporting our son’ (p1q2, male, usa). the positive response to the diagnosis tended to be associated with immediate and maternal family members, ‘my mother was relieved because my struggles could finally be attributed to a specific condition’ (p9q2, female, usa). while fathers and extended family tended to have higher levels of negative emotional response to the diagnosis of the condition, ‘father doesn’t really care. that’s a man thing’ (p18q4, female, ca), ‘mother: accepting. father: denial and doesn’t understand the illness’ (p31q2, female, egypt), ‘my husband doesn’t really want to believe it as my daughter does extremely well≈academically’ (p16q3, female, za), and ‘grandma dismissive, believes it’s a label for the sake of a label’ (p10q3, female, uk). although generally positive rather than negative emotional response to the diagnosis was identified, some families may experience concern regarding the negative impact that a diagnostic label may have on the family member. for example, ‘all (parents and sister) with mixed relief having something to work with going forward and trepidation as to the limits the condition places on those who have it’ (p41q20, female, za). the generally positive response to the diagnosis may be attributed to the active pursuit of the diagnosis by the participants in this study with the hope that a diagnosis may result in support. however, as the families journeyed on from the diagnosis, understanding, relief and supportiveness were replaced with frustration, anxiety and sadness during the day-to-day living experiences (figure 3). the development of empathy, hope and a sense of liberation were overshadowed by worry, depression and poor self-concept. this may be associated with the realisation that the diagnosis did not provide the level of support hoped for or the realisation of the multidomain and lifelong impact of this condition on the family. figure 3: frequency of emotional responses on the impact of dcd on the family. as the family navigates daily life with dcd, the realities of the lifelong difficulties become apparent resulting in grieving emotional responses. one mother explained: ‘there’s this real grief of like, i don’t have this, normal neurotypical kid, i have this little bundle of something called … complexity. and that just means that i have to adapt, and that’s hard.’ (p2i26, female, au) as the journey with dcd continues, families see the developmental delays between their child and the peer group widening, as a parent observed: ‘friends two years his junior and younger are overtaking him in some spheres and now commenting on his functioning, and it hurts to see him beginning to stand out more because of his delays.’ (p12q8, female, za) another parent lamented that, ‘it’s hard to watch his younger brother easily do things he struggles with’ (p43q5, female, usa). for individuals with a dcd diagnosis, their self-esteem and self-concept were influenced, as a participant stated, ‘i grew up believing i was broken and weird. teachers, family, and my peers never expected me to achieve anything’ (p4q2, female, uk). another participant explained that dcd was the root cause of their challenges with mental health: ‘i will say it’s had a significant impact on my mental health because i never had a lot of self-esteem. and i think a lot of that i can attribute to the dcd because i struggled in school, and i never felt like i belonged or was intelligent enough to go to university, or to even be in main line high school. and then i also struggled with employment, and it takes a toll on your self-esteem…. and while i don’t want to say it’s all because of dcd, i feel like that kind of underpins all of my self-esteem issues.’ (p9i41, female, usa) parents also observed their children’s mental health difficulties, ‘he thinks he’s dumb, stupid, weird and no one wants to be his friend. this isn’t true but it’s his perception’ (p6q16, female, usa). another mother added: ‘through the years with the hardship of school, being picked on in pe lessons, always coming last at everything he does, it takes a toll. he is 18 and is now clinically depressed and on medication.’ (p20q9, female, au) a parent expressed, ‘i get angry with myself for losing my patience and temper with him when his difficulties make situations stressful’ (p12q7, female, za). one mother highlighted that dcd is only one of the challenges faced by the family: ‘i think i’m still in the survival stages. and that might be more than just the dcd, you know, when you add all the different balls that i’m kind of juggling for the whole family. that’s where i think my daily survival is kind of coming from.’ (p2i27, female, au) another mother commented that she experiences ‘emotional challenges particularly around trying to balance the siblings, and my anxiety’ (p29q8, female, za). behavioural challenges associated with schoolwork were reported, ‘he has difficulties with reading and writing especially… so, when school started again, he started acting out’ (p5i7, female, usa). the dcd had some positive influences as one participant explained: ‘i know that i wouldn’t be who i am and i wouldn’t have the insights i have without my dyspraxia, and i wouldn’t be able to think about things and come up with solutions if i was neurotypical. so, i’ve actually found myself quite grateful that i am. despite all the challenges, i am finding that i don’t actually think i would swap it.’ (p4i25-26, female, uk) one participant, although not diminishing the challenges, highlighted the positive aspects of living with dcd, ‘living with this sucks, but i feel like it has made me a very empathetic person and it has contributed to my creativity’ (p23q8, female, usa). parenting a child with a disorder that is generally not well understood by healthcare or society can result in self-doubt regarding the ability to parent effectively. one family explained, ‘you start to feel like a bad parent. “what am i doing wrong? why isn’t this working?” (p6i8, female, usa). one parent shared that the family was now a closer unit: ‘that was really stressful because my husband didn’t understand at that point. but i think now, we’re probably closer for it because we’re a team and we’re working with my son, to help him grow and to help him learn, and we work on strategies together.’ (p11i30, female, ca) another mother explained: ‘i think my biggest challenge with his father is he was a sportsman … he wants his son to do rugby, he wants his son to do this, that, and the next thing … he wants this perfect son that can follow in his footsteps, and he can’t actually have it … that does also put a strain on the relationship because you have to acknowledge that he’s got special needs that we have to take care of.’ (p3i34-40, za) the importance of speaking openly about dcd as a family was mentioned, ‘i think it would be very bad for the whole family dynamic if we weren’t talking about it’ (p6i32, female, usa). the dcd influences the everyday experiences in which the family engages as parents explained, ‘we rearrange our family trips and outings based on abilities at the time’ (p7q6, female, usa); ‘socially it limits how much we can do without overwhelming our son’ (p28q4, female, new zealand); and ‘outings are limited by the physical disability. we cannot hike as a family and when traveling, assisted passage must always be booked for airports’ (p29q6, female, za). the sibling relationship and relationship between typically developing siblings and parents can also be impacted by dcd. a parent family explained that ‘therapy and doctor visits are very time-consuming, and the older sister feels neglected’ (p29q5, female, za). some families recognise the amount of attention given to family member with dcd but attempt to provide time for each family member and the family as a unit: ‘invariably he [sibling with dcd] does get a lot of extra attention. so, we try to balance it out. she’s [neurotypical sibling] got things that she does. he’s got things that he does and then there are things we try and do together.’ (p5i25, female, usa) while some siblings readily accept their sibling with dcd and may even appear to not notice the condition, others experience a range of negative emotions. for example, ‘frustration and anger from his sister as she perceives him to get special/more lenient treatment from us as parents’ (p12q3, female, za). another family commented on the frustration and irritation experienced by an elder sibling: ‘even though she understands his limitations, she still gets frustrated and mad that he “gets away” with things that i would never have let her “get away” with. she also gets irritated that i don’t make him do the same level or number of chores that she has.’ (p6q9, female, usa) a parent explained the sibling’s emotional experiences: ‘my younger daughter gets upset when [child with dcd] gets sad when he is struggling with something. he is 18 and struggling to learn to drive. my daughter is 16 and will start soon but she doesn’t want to start until he has his driver’s license. she doesn’t want to get it before he does.’ (p20i5, female, au) worry can also be experienced by siblings, as a parent noted, ‘my daughter has had to grow up fast and is always worried about him’ (p20q7, female, au). the dcd can impact all areas of family functioning from ‘getting ready for anything on time’ (p2q7, female, au) to difficulties with organisation as the individual tends to ‘create chaos and mess everywhere’ (p36q4, female, uk). a participant summed up the impact of dcd on family life simply as, ‘we are being challenged in every aspect of life’ (p24q3, female, usa). the dcd influences the family’s financial, emotional and relational well-being with both positive and negative aspects reported. theme 3: isolation many participants indicated a sense of isolation related to the lack of understanding of this condition within healthcare, education and society in general. families may find themselves isolated from social settings as a parent explained, ‘socially we are somewhat isolated because people don’t understand [child with dcd’s] unique personality and the physical challenges he lives with every day’ (p6q11, female, usa). another parent explained that the dcd symptoms can be misinterpreted by family members and friends, ‘friends and family often ascribe his difficulties to permissive and bad parenting’ (p12q11, female, za). the social isolation because of a lack of social understanding may in turn exacerbate the emotional challenges experienced by the family. as a result of the lack of understanding of dcd in society, families often have to explain the condition to others which is challenging, ‘i think that’s probably one of the biggest challenges we have is trying to actually communicate what he has to others’ (p3i44, female, za). another parent added that, ‘it’s hard to explain to people who don’t understand’ (p9i16, usa). the ‘invisibility’ of the disorder contributes to difficulties providing explanations, ‘my family had never heard of dcd so trying to explain an invisible thing is quite hard to do’ (p20q4, au). increased awareness would support families in being confident to participate in society without fear of rejection or misunderstanding: ‘i would like to have more social awareness of this. often in our social circles people expect my son to behave as typical children do, and when he gets frustrated, they often perceive this as misbehaviour.’ (p32q8, female, za) for some families, the lack of understanding can result in envy for those conditions, which carry greater awareness, ‘i used to almost wish he was autistic because there’s like tons of support for that and tons of reading and tons of information’ (p1i48, usa). another parent explained that ‘autism, they understand, they’ve seen it in the movies, dyspraxia they haven’t yet. so that’s a challenge’ (p3i44, female, za). a participant pointed out that the lack of understanding of dcd by healthcare professionals delegitimises the disorder: ‘i feel like it kind of like delegitimises it, when you have the diagnosis of autism, or even adhd, they know about it, and they have services established for it.’ (p5i13, female, usa) discussion developmental coordination disorder is a pervasive condition that influences every aspect of the individual’s life and the family unit, thus greater awareness of dcd, and an understanding of the family’s everyday experiences could assist healthcare and educational professionals to better support families journeying with this condition. this study highlighted the difficulties of obtaining a clear diagnosis and then navigating the healthcare system. these difficulties were commonly reported in first world and developing countries. in this study a parent from australia reported that although medical funding was available, she would have appreciated support along the difficult way. south africa has public and private medical facilities, however parents still struggled with the diagnosis visiting various medical professionals, such as the general doctor, physiotherapist, occupational therapist, speech therapist, audiologist and psychologist. although all health professionals should know the diagnostic criteria of dcd, the condition’s motor coordination difficulties are often subtle in their manifestation and thus not overtly obvious in the consultation room. even though the symptoms are visible if practitioners know what to observe, the symptoms are often dismissed or overlooked. south african parents in this study could afford access to the private healthcare system, but there was no pathway with clearly defined symptom recognition for the practitioners to follow. we surmise that difficulties with the diagnostic process will be exacerbated for the majority of parents in south africa who only have access to the public primary healthcare system. the length of time spent in search of a diagnosis was similarly reported by soriano, hill and crane (2015) who found that, on average, a dcd diagnosis was confirmed after two and a half years. a lack of understanding during the diagnostic process was similarly reported by the participants in the study by missiuna et al. (2006). in addition, 43% of the families in soriano et al.’s (2015) study were not offered any practical support during the diagnostic process. as in this study, these healthcare professionals tended to minimise the concerns described by the parents with the assumption that the child would outgrow the challenges. in this study, challenges navigating the education system were also raised. parents reported that few teachers in schools are aware of the condition, and even with a clear diagnosis, one parent in south africa reported that the school would not believe the diagnosis. parents then inform teachers of their child’s condition and mobilise supportive interventions as found in a similar study by missiuna et al. (2006). developmental coordination disorder affects planning of schoolwork (kranowitz 2005), and the symptoms related to impaired fine motor coordination influence skills of manual dexterity related to writing, cutting, dressing, doing puzzles and playing sport which are onerous and frustrating to execute quickly and neatly (winson & fourie 2020). upon diagnosis, families tend to experience positive emotions such as relief, understanding and acceptance. however, as the journey with the disorder continues the daily challenges realised, a negative emotional response tends to develop with frustration, sadness and anxiety overshadowing the previous positive emotions. with the high levels of negative emotion experienced by families, it is unsurprising that cleaton et al. (2019) found that nearly three-quarters of the participants were at risk of depression. in addition to the emotional response, families are often faced with the financial burden of paying out of pocket for supportive interventions and specialised schooling. the time spent in doctors’ appointments, therapies and support can reduce the availability of a parent to participate in the workforce creating a further financial burden. these time constraints result in reduced capacity for a parent to follow a career of their choice as previously reported (cleaton et al. 2019; stephenson & chesson 2008). a parent in south africa reported spending thousands on medical interventions in the past decade. it is unfortunate that only a minority of south african parents could afford such expenditure, whereas most parents would be reliant on accessing the overburdened public healthcare system. the challenges faced as a family can influence the relations between parents and siblings. similarly, stephenson and chesson (2008) found that while some families experienced marital breakdown, others grew closer together. challenges faced by siblings have been previously identified (cleaton et al. 2019). although the disorder can unify a family, it can also contribute towards conflict, jealousy and misunderstanding. finally, families often feel isolated from their communities and social sphere because of a general lack of understanding of dcd. families are often faced with explaining the condition to the public. this sense of isolation was attributed to a lack of social awareness and the avoidance of certain activities. similarly, cleaton et al. (2019) reported that a third of the participants made changes to family activities to accommodate the family member with dcd. further research into the specific support that can be provided to parents is required to better support these families, particularly regarding the unequal public and private healthcare and education systems in south africa. recommendations and conclusion this study highlights the significant impact that dcd has on the family unit despite only one member of the family being diagnosed with the condition. healthcare professionals and educators should consider the individual with dcd within the context of their family so that holistic support can be provided. this may include the provision of location-specific, practical support suggestions for the family, options of family-based and individual therapy for the different members of the family to process their emotions and responses to the diagnosis of dcd. the training programmes of healthcare and education practitioners should include dcd in the curriculum. the development of protocols with clear pathways for diagnosis and post-diagnostic support could be developed to assist families with the diagnostic frustrations. healthcare professionals should make relevant referrals and work in multidisciplinary contexts, which include occupational therapists and educators so that families can be effectively guided through both the healthcare and education systems. education and developing awareness of this ‘invisible thing’ would greatly facilitate integration and acceptance for families journeying with the frustrating condition of dcd. acknowledgements the authors would like to acknowledge and thank the participants in this study. this article is partially based on the author’s, n.l.o., thesis entitled “from invisibility to invincibility: guidelines for supporting families through the diagnosis and journey with developmental coordination disorder” towards the degree of doctor of education in the faculty of education, university of johannesburg, south africa in 2023, with supervisor j.v. fourie. competing interests the authors have declared that no competing interest exists. authors’ contributions n.l.o. conducted the data collection, analysis and wrote the original draft of the article. j.v.f. sourced funding, acted as a supervisor and revised the manuscript. funding information the study was supported by a merit bursary from the university of johannesburg and the faculty of education research funding. data availability the raw data collected for this study are available on request from the authors. disclaimer the views and opinions expressed in this article are those of the author(s) and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the author(s) are responsible for this article’s results, findings, and content. references american psychiatric association (apa), 1987, diagnostic and statistical manual of mental disorders, 3rd edn., rev. revision. washington dc. american psychiatric association (apa), 2013, diagnostic and statistical manual of mental disorders, 5th edn., washington dc. https://doi.org/10.1176/appi.books.9780890425596 american psychiatric association (apa), 2022, diagnostic and statistical manual of mental disorders, 5th edn., text revision. washington dc. https://doi.org/10.1176/appi.books.9780890425787 bernard, m., leonard, h.c., hills, e.l., botting, n. & henry, l.a., 2018, ‘executive functions in children with developmental coordination disorder: a 2-year follow-up study’, developmental medicine and child neurology 60(3), 306–313. https://doi.org/10.1111/dmcn.13640 blank, r., barnett, a.l., cairney, j., green, d., kirby, a., polatajko, h. et al., 2019, ‘international clinical practice recommendations on the definition, diagnosis, assessment, intervention, and psychosocial aspects of developmental coordination disorder’, developmental medicine and child neurology 61(3), 242–285. https://doi.org/10.1111/dmcn.14132 brown-lum, m. & zwicker, j.g., 2015, ‘brain imaging increases our understanding of developmental coordination disorder: a review of literature and future directions’, current developmental disorders reports 2015(2), 131–140. https://doi.org/10.1007/s40474-015-0046-6 case-smith, j., 2005, occupational therapy for children, elsevier mosby, st. louis. cermak, s. & larkin, d. 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research methods and design results discussion conclusion acknowledgements references about the author(s) daphney mawila department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa citation mawila, d., 2022, ‘the resilience of learners with specific learning disability in unequally resourced learners with special education needs schools in diverse contexts’, african journal of disability 11(0), a1044. https://doi.org/10.4102/ajod.v11i0.1044 original research the resilience of learners with specific learning disability in unequally resourced learners with special education needs schools in diverse contexts daphney mawila received: 18 mar. 2022; accepted: 15 aug. 2022; published: 29 nov. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite the inequality of resources in south africa, learners in less-resourced schools and contexts can be resilient in the face of adversities. objectives: this study sought to investigate the impact of unequal resources in diverse contexts and schools on the resilience of learners with specific learning disability (sld) in learners with special education needs (lsen) schools in south africa. method: a quantitative explanatory design was adopted and respondents were selected using a purposive sampling technique. a sample of 217 learners with slds across four lsen schools located in diverse contexts in the gauteng province, was selected. data were collected using the child and youth resilience measure (cyrm-28). the spss software was used to analyse the data and one-way analysis of variance was used as a statistical technique. results: the results showed that resilience scores did not yield a significant statistical difference among learners from unequally resourced schools (p = 0.300 > 0.05) and diverse contexts (p = 0.173 > 0.05). these results suggest that resilience was the same across unequally resourced schools and diverse contexts; thus, all learners are capable of resilience regardless of these contexts. conclusion: resilience of learners with sld was not necessarily associated with the accessibility of resources in their contexts but with their agency in identifying them and using them meaningfully to combat their learning disabilities. contribution: the study contributes to the limited body of knowledge on the resilience of learners with sld in unequally resourced contexts and lsen schools. keywords: learners with educational special needs; less resourced; resilience; resilience enabling; specific learning disability; social-ecological; well resourced; unequal opportunities. introduction an increasing concern about what makes individuals cope with adversity in diverse contexts is growing globally. prior resilience studies (masten 2014; theron 2016; van breda 2018; van rensburg, theron & ungar 2019) primarily focused on the socio-ecological processes and resources that predict resilience in individuals exposed to hardships. ungar (2011) stated that building available and accessible physical and social resources for individuals enables their resilience to cope well with severe stressors. zautra, hall and murray (2010) affirmed that development, recovery and sustainability are probable and are extremely reliant on the resources available in a specific context. in alignment with this, resilience is defined as an individual’s capability to bounce back from hardship and their ability to access available resources in their context to sustain and enhance well-being and the capability of communities to avail meaningful resources (ungar 2011). thus, resilience depends on the individual’s ability to navigate their environments and access resources to foster their resilience when faced with risk factors. equity of resilience resources in south african schools and communities is a matter of concern; some schools, especially in most urban areas, are well resourced while others in rural areas and townships are less resourced. some studies (e.g. theron 2016; van breda & theron 2018) showed that well-resourced schools and contexts are more resilience-enabling compared with the less-resourced settings. a study by johnson and lazarus (2008) showed that resourced schools and contexts have fewer students presenting with risky behaviours. the authors add that these schools have sufficient support structures to build students’ resilience despite adversity. among south african youth in less-resourced schools and contexts, adversities are common and prominent (van breda & theron 2018). dickens (2018) described that south africans face several socio-economic challenges, such as unemployment and poverty, which result in millions of students struggling to complete their studies and get employment. a study by theron (2016) stated that a black woman raised in single-parenting families in a poor context with limited resources is likely to receive inferior schooling and poor support from caregivers and experience violence, which will complicate her life path. theron added that these adversities and co-occurring risks will probably lead to a lack of opportunities to defeat the odds that work against her, especially if socio-ecological stakeholders do not intervene. moreover, the country’s socio-economic profile hinders south african learners’ capability to effectively deal with the adversities they face (van breda & theron 2018). theron and theron (2010) stipulated that a supportive and safe school environment tends to buffer the effect of risks by providing protective factors and promoting resilience for its learners. as most of the schools in rural areas and townships have limited resources, are they able to support or develop the resilience of their learners, considering the challenges and their troublesome environments? in adverse environments such as those where these schools are located, van breda and theron (2018) questioned how some learners demonstrate better-than-expected competency and do well. contrary to expectations, the study on south african youth resilience by van breda (2017a) asserted that the highest levels of resilience were found in children’s homes in poorer communities. this study argues that everyone, whether in resourced or less-resourced schools and contexts, is capable of resilience. resilience is enabled by the individuals’ capacity to access and utilise coping resources in their environment. van breda (2017a) found that young people’s resilience was not associated with the accessibility of resources in their social context but with their agency to recognise these resources as prospects to mobilise them to cope with unfavourable circumstances. this study supports the notion that every learner is capable of resilience regardless of unequal resources presented to them at school and within their contexts. limited research has been conducted on resilience and unequal resources in different contexts and learners with special education needs (lsen) schools. thus, the novelty of this study lies in its intention to investigate whether unequal opportunities in diverse contexts and lsen schools influence the resilience of learners with specific learning disability (sld). the study sought to add to the growing body of knowledge regarding the resilience of learners with sld in diverse schools and contexts. furthermore, the study could offer insights into the support needs of sld learners’ resilience development in lsen schools. specific learning disability specific learning disability is defined by the american psychiatric association (2013:32) as a neurodevelopmental disorder ‘diagnosed when there are specific deficits in an individual’s ability to perceive or process information efficiently and accurately’. specific learning disability’s origins can be traced to biology and the interaction between genetics and environmental factors. american psychiatric association (2013) stated that this interaction negatively impacts an individual’s brain capacity to perceive and process information efficiently. gow, mostert and dreyer (2020) stated that an individual’s basic cognitive processing in written and spoken language is negatively affected by sld. bandla, mandadi and bhogaraju (2017) indicated that the manifestation of sld occurs during the individual’s early years of formal education and results in challenges in learning basic foundational scholastic skills such as writing (dysgraphia), mathematics (dyscalculia) and reading (dyslexia) and co-exists. thus, these difficulties have a devastating long-term impact on the individual’s capacity to function daily, especially in tasks that include written words, mastery of numbers, written expression and reading (american psychiatric association 2013). as a result of these difficulties, an sld is considered a risk factor for individuals’ development. similarly, harðardóttir, júlíusdóttir and guðmundsson (2015) pointed out that sld is regarded as a risk factor that predicts adverse outcomes. although sld is adversity, resources within their social ecology can promote their resilience, which could be used to conquer the challenges that accompany the presence of sld (lance et al. 2015). venkatesan (2017) reported that the diagnosis of sld is not as simple as noting the list of signs and symptoms an individual presents with. several factors, including academic achievement level and cognitive, sensory, adaptive, social and emotional functioning, should be considered before diagnosing an individual with sld. in multilingual and cultural contexts such as south africa, the diagnosis of sld is complex because several assessment tools used to assess sld were not developed for south african populations and lack appropriate norms. a study conducted in india by kohli, sharma and padhy (2018) revealed that various batteries used to assess slds lacked well-established norms and are based on a limited sample, making diagnosing individuals with sld difficult. in south africa, where a high number of learners are first-generation learners with limited home support, the limited infrastructure, poorly trained teachers, inadequate teaching aids and controversies on learning in a second and third language should also be considered before making such a diagnosis. the respondents of this study were already diagnosed with sld and were in lsen schools. based on the aforementioned diagnosis difficulties, the author acknowledges that there is a possibility that the respondents of this study may have been misdiagnosed with sld; however, the scope of this study is not investigating the appropriateness of their diagnosis but the resilience of learners with sld in diverse schools and contexts. socio-ecological framework of resilience this study employed insights from the socio-ecological framework of resilience. ungar (2011) stipulated that this framework traces its origin to the ecological system theory proposed by bronfenbrenner in 1979. for decades, the socio-ecological framework of resilience gained popularity and it has been used to understand the reasons as to why certain people resile from adversity whereas others do not (van breda 2017b). the socio-ecological framework of resilience is defined as ‘the ability of individuals, families and communities to navigate and seek out meaningful social and ecological resources that provide protective factors in times of stress’ (höltge et al. 2020:19). theron (2018) posited that this framework emphasises individuals’ social ecologies in enhancing and promoting their resilience. within this framework, ungar (2011) stated that resilience is: [t]he child’s ability to navigate their way to social, psychological, and physical resources that sustain their well-being amid adversity and their ability to negotiate for these resources to be provided to them in culturally meaningful ways. (p. 225) in addition, wang, liu and qi (2014) asserted that multiple factors (such as individual, relationships and contextual) influence the resilience development process, thus making the concept of resilience complex. aldwin and igarashi (2012) stated that these factors interrelate at the individual, environmental and socio-cultural levels. the levels provide resources for an individual’s resilience. studies (e.g. masten 2014; ungar 2013) have pointed out that socio-ecological stakeholders, such as caregivers, practitioners, community leaders, policymakers and service providers, are jointly responsible for individuals’ attainment of desirable outcomes. a study by theron (2016) contended that the stakeholders need to avail the resources necessary for individuals with unfavourable life circumstances. in this way they can help individuals combat negative life outcomes in different contexts. even though south africa’s contextual challenges hamper the capacity of individuals to deal effectively with challenges (van breda & theron 2018), resilience research demonstrates that individuals overcome hardships and become competent, resilient and successful individuals (malindi 2014; ungar 2011). this applies to learners in less-resourced schools and contexts as every community has protective factors that enable individuals to cope with adversity. it is, thus, the individual’s duty to identify and utilise these factors to overcome hardships. stakeholders (such as caregivers, schools, teachers and community members) must capacitate learners in navigating their respective contexts and search for resilience-enabling resources. this study intended to investigate the impact of unequal resources in diverse contexts and schools on the resilience of learners with sld in lsen schools in south africa. the specific research question was as follows: do unequal resources in diverse lsen schools impact learners’ resilience with sld? the findings would effectively reveal that all learners with sld can develop resilience irrespective of the unequal resources in their environment. the insights of this study would also assist stakeholders in realising that limited resources should not hinder them from enabling the resilience of learners with sld. the formulated hypotheses for this study are stated as follows: h0: there is no significant difference in resilience across different contexts and schools with unequal resources. h1: there is a significant difference in resilience across different contexts and schools with unequal resources. research methods and design approach and design an exploratory quantitative research design was employed in this study as it permits comparisons among learners in lsen schools and diverse contexts. this research is exploratory because it attempted to investigate the less researched area. data were collected over a limited time, making this study cross-sectional. setting the study participants were selected from four lsen schools located in johannesburg north, soweto, west rand and elspark. compared with the three schools, the lsen school in soweto is situated in a township where most residents face socio-economic challenges, with contextual adversities and elevated unemployment levels. the residents in this context are black african individuals, previously disadvantaged and fall within a low socio-economic status. therefore, the school in soweto has restricting infrastructures and few resources. services such as occupational, psychological and remedial services are not offered at the school. psychological services are sought from the gauteng department of education (gde) experts, who are not always readily available because of numerous schools needing services in this specific district. the lsen schools in johannesburg north, west rand and elspark are located in urban areas. most of the inhabitants are in the middle to upper socio-economic status. unlike the lsen school in soweto, learners pay school fees in these contexts. as these are public schools, the exemption policy applies to parents who cannot afford the school fees. parents must apply to the schools to receive an exemption from paying school fees. as a result of the limited lsen schools for learners with sld across the gauteng province in south africa, learners are not limited to attending schools close to their homes as stipulated in the guidelines for public mainstream schools. in these urban schools, few numbers of learners in a class permit specialised teaching by competent teachers and individualised attention. these schools have adequate infrastructure and various supportive resources, including occupational and speech therapists, remedial support, social workers and learning support experts, psychologists and nurses. this study comprised a sample of 69 learners from elspark, 96 learners from the west rand, 42 learners from soweto and 10 learners from johannesburg north. study population and sampling strategy learners presenting with sld were purposefully selected to partake in this study because they were best suited for the purpose of the study (townsend & de la rey 2016). in line with the focus of the study, the sampling criteria included learners already diagnosed with sld and who were placed in lsen schools. learners were selected based on their interest in participating in this study and participants were drawn from four lsen combined schools. combined schools cater for both primary and secondary school-going learners. the sample consisted of 217 learners with sld in lsen schools, boys and girls aged between 9 and 19 years. research tool the child and youth resilience measure (cyrm-28) was used to collect quantitative data. the cyrm-28 is an existing questionnaire, which has been used across cultures and countries (e.g. amirsardari et al. 2016; langham et al. 2018; sanders et al. 2015; zand, liebenberg & shamloo 2016). in south africa, studies (e.g. govender et al. 2017; van rensburg, theron & ungar 2017) also found that cyrm-28 is a reliable and valid measure of resilience. ‘crym-28 seeks to provide a more comprehensive understanding of the processes of resilience across culture and context, accounting for the heterogeneity of culture and experiences of youth’ (liebenberg et al. 2012:87). the cyrm-28 items provide a reliable and accurate measure of resilience across cultures as it was developed by multicultural research teams across different countries (ungar & liebenberg 2011). the cyrm-28 is a self-report paper-based measure comprising 28 items on a five-point likert scale (1 = not at all, 5 = a lot). it takes 20 min to complete the measure. however, in this study, learners were given more time (40 min) to complete the measure because of the nature of their diagnosis. three multilingual university of johannesburg master’s student psychologists were employed as field workers whom the researcher trained. the focus of the study was discussed with them so that they could be familiar with the study. their role included reading the cyrm-28 to learners and assisting with completing the items. cronbach’s alpha coefficient was used to analyse the reliability of the cyrm-28. internal consistency of a measure ranges between 0 and 1, where 0.0 means no consistency and 1.0 is a perfect consistency in measurement (tavakol & dennick 2011). in this study, the cyrm-28 had a high internal consistency as the cronbach’s alpha value was 0.867. data collection as mentioned in the previous section, three multilingual field workers were employed to assist with data collection. learners, especially in soweto, struggled with reading the questionnaire. some translation was required because of language barriers, which could have impacted the measure’s reliability and results thereof. to ensure a precise understanding of the cyrm-28, items were translated for 42 learners (in the school based in soweto) as most did not understand english. as a result, data collection was prolonged because of difficulty in translating instructions to african languages. translations are likely to have compromised the reliability of the cyrm-28. however, as stated earlier, a cronbach’s alpha of 0.867 suggested that the cyrm-28 was a reliable measure of resilience for learners with sld. thus, cyrm-28 appropriately measures the resilience of learners who present with sld in the gauteng province, south africa. data analysis the statistical package for the social science (spss) software (version 25) was used to analyse the data collected using the cyrm-28. one-way analysis of variance (anova) statistical technique was utilised to investigate whether a statistically significant difference existed across unequal resources in four lsen schools and contexts. one-way anova compares the means of the study’s sample, and it is an extension of two independent t-test samples to more than two groups (ostertagova & ostertag 2013). ethical considerations the university of johannesburg ethics committee at the faculty of education granted ethical clearance (sem 2 2018-007) to conduct this study. the gde and school headmasters also gave permission to collect data. parents of learners consented for their children to be part of the study and learners signed informed assent forms. results demographic characteristics table 1 illustrates the frequency distribution of the respondent’s demographic characteristics. the sample comprised respondents aged 9–19 years; 153 (70.5%) of the participants were boys and 64 (29.5%) were girls. most respondents were between the ages of 12 and 14 years, demonstrating 77 (35.5%) of the sample. a total of 76 (35%) respondents were aged between 9 and 11 years and the smallest number of respondents, 16 (7.4%), were between 18 and 19 years of age. the majority of respondents’ home language was english (89; 41.0%), followed by isizulu (43; 19.8%) and setswana (29; 13.4%), while xitsonga, siswati, tshivenda and other (portuguese) languages had the least number of participants, respectively. the majority of the respondents were in grade 5, signified by 44 (20.3%), followed by 39 (18.0%) in grade 6 and 32 (14.7%) in grade 4. the lowest number of respondents were in grades 12 (1.4%) and 8 (4.1%), respectively. table 1: demographic characteristics. one-way analysis of variance on the impact of different contexts on resilience one-way anova was used to examine the impact of different contexts on resilience. respondents in this study were divided into three contexts: urban, rural and township. as the study focused on learners in diverse contexts with unequal resources, this demarcation was necessary. table 2 presents the percentage breakdown distribution according to respondents’ residence area. table 2: area of residence. table 2 shows that most of the respondents in this study lived in a township area, representing 118 (54.4%), followed by those in an urban area, described by 87 (40.1%) and lastly, 12 (5.5%) in the rural area. table 3 presents the results of the impact of different contexts on resilience. table 3: analysis of variance resilience across different contexts. as evident in table 3, the p-value = 0.173 > 0.05 significance level reveals no statistically significant difference in resilience scores among learners with sld from diverse contexts. thus,across contexts, resilience is the same. this result suggests that resilience is not reliant on the area where an individual resides and existing in a particular environment does not guarantee an ability to resile. one-way analysis of variance on the impact of different schools on resilience one-way anova was also performed to investigate the impact of different schools on resilience. table 4 illustrates the frequency distribution of the respondents’ schools. table 4: distribution of respondents per school. most of the participants were from a school based in west rand, represented 96 (42.2%) participants, followed by 69 (31.8%) in elspark and 42 (19.4%) in soweto. a school in johannesburg north had the least number of participants, 10 (4.6%). table 5 demonstrates the study’s results on the impact of different schools on resilience. table 5: analysis of variance resilience across different schools. table 5 shows no statistically significant difference in resilience scores among learners from different schools, as revealed by the p-value = 0.300 > 0.05 significance level. this study found that resilience was the same across different schools. therefore, resilience was the same across schools in diverse lsen schools. the study hypothesised that ‘there is no statistically significant difference in resilience across different contexts and schools with unequal resources’; this hypothesis was therefore accepted. discussion learners with sld face numerous adversities in life; thus, resilience can help them navigate these adversities towards positive life outcomes. learners in under-resourced contexts and schools have added contextual challenges such as poverty and a lack of or limited resources, making them more vulnerable. the need for resilience resources is highly critical in such contexts. unlike studies such as theron (2018) and van breda and theron (2018) that found that well-resourced schools and contexts are linked to greater resilience, the results of this study show that resilience is the same across unequally resourced contexts and lsen schools. learners presenting with sld can develop resilience, regardless of being in a well-resourced or less-resourced environment. the results of this study contest the perception that well-resourced schools and contexts predict higher resilience levels than less-resourced ones. in correlation with this result, researchers such as mampane (2014), theron and theron (2010) and van rensburg et al. (2019) have shown that even the poorest communities have resilience resources to draw soothing factors in the face of hardships. van breda (2017a) also found that regardless of social contexts, children from impoverished communities can be resilient and their resilience could equal or exceed that of children from better-resourced or wealthier neighbourhoods. studies focusing on resilience have consistently confirmed that children and youths with unequal resources overcome debilitating adversity in their contexts and develop into resilient individuals (malindi 2014; masten 2014; ungar 2013; van breda 2017b; van rensburg et al. 2019). in addition, a study by mampane (2014) showed that township school learners displayed resilience despite the contextual factors that serve as hurdles in their development. as this study rules out that learners with sld can develop resilience irrespective of their unequal resource contexts, what could be attributed to their resilience? the researcher argues that the capacity of learners with sld to navigate their unequally resourced contexts and search for socio-emotional, physical and psychological resources that maintain their functioning amid adversity explains this resilience (ungar 2015). despite residing in unequal-resourced contexts and lsen schools, this study contends that learners with sld should navigate their social ecology to find accessible and meaningful resources. their resilience is thus entirely reliant on their capability to use the accessible resources to flourish and persist regardless of their sld. thus, capacitating learners presenting with sld to navigate their environments and identify and use accessible resilience resources is imperative. moreover, ungar (2006) affirmed that individuals should exercise their agency in navigating pathways towards resilience resources. the results of this study highlight that it is not the number of resources that enable learners with sld to resile but their ability to draw from available socio-ecological resources within their unequally resourced contexts and lsen schools. in line with the given discussion on the social-ecological framework of resilience, navigating and identifying these resources in their unequally resourced contexts and lsen schools accounts for their resilience. the researcher notes that similar studies have been performed; however, none of the studies has been carried out on lsen schools and their contexts. the results of this study are unique as it challenges learners with sld with limited resources not to give in to feelings of helplessness or incapability. this study also acknowledges that learners with sld need to optimise the little or limited resources in their contexts to enhance their resilience. conclusion this study investigated the impact of unequal resources on learners’ resilience with sld in south african lsen schools and diverse contexts. the results revealed no significant difference in resilience across different contexts and schools with unequal resources. thus, learners with sld can develop resilience despite the unequal resilience resources they are presented within their schools and contexts. this study further pointed out that it is not necessarily the quantity of the resilience resources a learner with sld is presented with, but their ability to navigate their contexts in search of these resources and utilise them for their optimal development that enables their resilience. equity of resources within lsen schools and diverse contexts will not be attained any time soon, and the reality may be that equity may not be possible at all. this difficulty calls for research to uncover resilience-promoting resources in different contexts and lsen schools in south africa. prior studies have shown that in different contexts, even with fewer resources, resilience is prevalent, indicating that everyone is capable of resilience regardless of the limiting circumstances they find themselves in. the communities and lsen schools may be less resourced; however, the little resources the contexts have can be used meaningfully to enable the resilience of learners with sld. it is, thus, important that learners with sld should be capacitated with the ability to navigate their environments for resilience enablers. this study calls on stakeholders (such as parents, school personnel and community members) to capacitate learners with sld with skills to navigate their contexts and search for resources that promote resilience. these skills include planning tasks to identify resources and interviewing community members about any available resources. this study emphasises the individual’s capacity to navigate resilience-enabling resources, which could be integrated into school lessons. the curriculum at school needs to consider empowering learners with sld with life and resilience skills, such as effective ways to handle unfavourable life circumstances. school tasks could include community mapping and the purpose will be to explore available and accessible services and structures in their respective contexts. social-ecology stakeholders, such as parents, family members, peers, teachers, neighbours and community members, should collaborate to build learners’ capacity to navigate their contexts. one of the limitations observed in this study was that some of the learners in soweto struggled with reading the questionnaire and presented with english language difficulties. the limitation was addressed by reading for them and on-the-spot translation of the cyrm-28 into their mother tongue to ensure accurate comprehension of the items. the reliability of the results could have been compromised. further research on the topic can be considered using a qualitative research approach. in addition, similar research can be replicated in other contexts in south african and lsen schools outside the gauteng province. acknowledgements this article constitutes a part of the author’s large-scale doctoral study. the author appreciates her promoter dr helen dunbar-krige from the university of johannesburg for contributions towards her professional development. competing interests the author has declared that s no competing interests exist. authors’ contributions i declare that i am the sole author of this research article. funding information this study was supported through an earmarked grant allocated as part of the teaching and learning development capacity improvement programme implemented through a partnership between the department of higher education and training and the european union. data availability the data used in this study would be made available upon reasonable request to the author. the study was quantitative in nature and participants cannot be identified. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of the author. references amirsardari, m., 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university, south africa 3physiotherapy department, university of the western cape, south africa 4karolinski health institute, stockholm, sweden correspondence to: anthea rhoda email: arhoda@uwc.ac.za postal address: private bag x17, bellville western cape 7535, south africa dates: received: 19 oct. 2014 accepted: 20 may 2015 published: 10 dec. 2015 how to cite this article: kumurenzi, a., goliath, c., mji, g., mlenzana, n., joseph, c., stathum, s. et al., 2015, experiences of patients and service providers with out-patient rehabilitation services in a rehabilitation centre in the western cape province, african journal of disability 4(1), art. #164, 7 pages. http://dx.doi.org/10.4102/ajod.v4i1.164 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. experiences of patients and service providers with out-patient rehabilitation services in a rehabilitation centre in the western cape province in this original research... open access • abstract • background and literature review • research method and design    • setting    • population and sampling    • design    • data collection    • data analysis    • trustworthiness    • ethical considerations • results    • theme 1: perceptions of participants regarding service providers’ knowledge and skills    • theme 2: participants’ experiences with accessibility to and within rehabilitation centres    • theme 3: participants’ experiences with the interaction of service providers with patients    • theme 4: participants’ experiences with participation and involvement in rehabilitation    • theme 5: participants’ experiences with provision of information    • theme 6: participants’ experiences with structure and organisation of rehabilitation sessions • discussion    • limitations of the study • recommendations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: rehabilitation is important for persons with disabilities as it contributes to their sense of autonomy, self-worth and social participation, and improves their quality of life. improving the quality of rehabilitation services requires the dialogue of patients’ perceptions with those of service providers, in order to recommend informed reform. objective: the objective was to explore the experiences of persons with physical disabilities and service providers, regarding the multi-disciplinary rehabilitation services provided at a community-based out-patient rehabilitation centre. methods: a qualitative, exploratory study design was used to collect the data. a focus group was conducted with conveniently selected persons with physical disabilities. three in-depth interviews were conducted with purposively selected key informants. all ethical considerations were adhered to during the implementation of the study. results: patients and service providers had different experiences regarding accessibility to rehabilitation services, and similar experiences with patient education and intensity of rehabilitation. although the patients experienced that the service providers had sufficient knowledge and skills to manage them, services providers expressed that they lacked certain skills. conclusions: the experiences expressed highlighted the need to improve rehabilitation services in terms of increasing the capacity of service providers and providing transport services for persons with disabilities. background and literature review top ↑ the number of people living with a disability is increasing. the rate of disability ranges from 11.8% in higher income countries to 18.0% in lower income countries, in those aged 18 years and older (world health organisation 2011). disability impacts negatively on the physical, psychological, mental, economic, and social well-being of individuals (anderson et al. 2000; mont 2007). in south africa, the impact of disability is vast, which negatively affects persons with disabilities (pwds), their families, communities and health services (mont 2007). rehabilitation is a vehicle that can be used to address the impact of disability as it is a process that assists with addressing the impact of disability on the lives of pwds, by contributing to their sense of autonomy, self-worth and social participation (eva & wee 2010). furthermore, rehabilitation is a concept that is aimed at enabling pwds, allowing them to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels (united nations 2007). although rehabilitation is reported to improve the quality of life of pwds, it has been estimated that amongst the 16% of people living with disabilities in africa, only 2% have access to rehabilitation services (un 2007). in contexts where rehabilitation services are lacking or inadequate, the life style of pwds could be negatively affected. seeking to ascertain patients’ perceptions regarding rehabilitation programmes and services, is important for advocating change (doh 2000). this is also important as clinicians and patients could have different views on outcomes, post-illness (hewlett 2003). patients’ experiences of a rehabilitation centre revealed that a relaxed environment, friendly and understanding staff and the presence of other patients contributes to a positive rehabilitation experience (wain, kneebone & billings 2005). individuals with disabilities have also reported that there is a lack of rehabilitation programmes that focus on facilitation of income-generating activities and access to schools or vocational training (dusaberurema 2009). service providers had also previously reported that they found it difficult to reach certain areas to provide community-based services to people with disabilities, resulting from geographical constraints (dusaberurema 2009). poor referral systems, a shortage of staff, long travelling distances and a lack of support were highlighted as the major challenges identified by mothers in the management of their children with a clubfoot (kingau, rhoda & mlenzana 2015). in south africa, rehabilitation can be provided at in-patient settings, out-patient settings and, to a lesser extent, in the patients’ homes and communities. a few studies have reported on the pwds’ experiences regarding rehabilitation services in the western cape, south africa (de la cornillere 2007; kahonde, mlenzana & rhoda 2010). de la cornillere (2007) reported on stroke patients’ experiences regarding stroke groups, whilst kahonde et al. (2010) explored the experiences of persons with physical disabilities of rehabilitation services, at a number of community health centres. a consistent theme across these studies is that patients still encounter problems in accessing rehabilitation services in terms of transport, a shortage of resources and a lack of information provision regarding programmes and services of pwds. although there were studies conducted at some community health centres in the western cape, the information is based only on patients’ experiences. according to wottrich et al. (2004), exploring the perceptions of both service providers and patients proved to be crucial in improving physiotherapy services. perceptions of service providers regarding experiences of rehabilitation are limited in the literature. accessing persons with disabilities in the community has been highlighted as a factor-limiting rehabilitation identified by service providers (dusaberurema 2009). in addition the local studies did not report on community-based rehabilitation services provided by a fulltime physiotherapist and occupational therapist with speech therapy services offered mainly by students. the rehabilitation services were, therefore, provided by a multidisciplinary team on a regular basis, as other community-based settings might have locally based fulltime physiotherapists, with part time or sessional occupational therapists and no speech therapist. students can be seen as a vital component of the team, as rehabilitation services provided by students are rated as being high (stiller, sorich & roberts 2013). this paper provides the findings of a study that focused on the experiences of both the patients and the service providers to rehabilitation services, currently provided by a multi-disciplinary team at a rehabilitation centre in the western cape. the objectives of the study were to explore the perceptions and opinions of persons with physical disabilities, as well as services providers’ experiences regarding the following: service providers’ knowledge of the disability treatment and skills training interaction with service providers information obtained from the service providers accessibility to rehabilitation services patient participation and involvement in the rehabilitation the structure of rehabilitation sessions. the objectives of the study are based on certain principles of community-based rehabilitation. an important goal of community-based rehabilitation is to empower people with disabilities, their families and communities. in doing so rehabilitation services need to be accessible and involve people with disabilities and their families in the rehabilitation process (who 2011). research method and design top ↑ setting the study was conducted at an outpatient rehabilitation centre in the cape town metro health district. rehabilitation services at this centre are provided by one full-time physiotherapist and one occupational therapist respectively. part-time speech and language therapy services are also provided to patients with physical and psychosocial impairments and disabilities. the services rendered at this centre include preventive, promotive, curative and rehabilitation services. health conditions that are treated at this centre include: orthopaedic neurological surgical gynaecology and obstetrics paediatric respiratory. the occupational therapy department commonly provides services to between 59–154 patients, whereas physiotherapy services are rendered to between 65–325 patients per month. at the centre, speech therapy services are provided by students and between 20–120 patients utilise this service per month. population and sampling the study population consisted of patients with physical disabilities and service providers working at the out-patient rehabilitation centre. patient records of those aged 18 years and above who received rehabilitation during 2009, were divided into groups and, thus, stratified according to the seven most common physical health conditions managed at the specific rehabilitation centre. the study was carried out during 2010, which means that the population of patients that received rehabilitation services during the preceding year (2009) was eligible for participation, as they had completed their respective programmes. this was also undertaken to limit the degree of recall bias, which is inherent to qualitative studies. the conditions were: spinal cord injuries head injuries strokes amputees fractures and dislocations osteoarthritis neuromuscular afflictions. from the most common health conditions, three patients were conveniently selected to take part in the study. a total of 21 conveniently-selected patients were telephonically informed about the study and their consent was sought. in total, 11 consented to participate in a focus group discussion (fgd) which was later held at the rehabilitation centre. of those, six were female and the mean of age of the participants was 54.82 years. participants’ characteristics are presented in table 1. concerning the service providers, all three employees at the centre participated in one-on one in-depth interviews. all were female and their years of working experience ranged from seven months to 15 years. table 1: patients’ characteristics. design an exploratory descriptive qualitative methodology was used to collect the data. this design provides a comprehensive summarisation of experiences that deal with the ‘why’, ‘how’ and ‘what’ questions surrounding the experiences of rehabilitation of service users and providers. further, this design is useful for hypothesis generation and theory development, as it leans toward the naturalistic approach of studying a particular phenomenon within contextual constraints (neergaard et al. 2009; sandelowski 2000). data collection in both the fgd and the in-depth interviews that lasted for approximately 45 minutes to an hour, the researcher used an interview guide to explore the experiences regarding rehabilitation services. the fgd with the patients explored the following: the service providers’ knowledge and skills training interaction between patients and service providers information obtained by patients accessibility to rehabilitation services patient participation and involvement in rehabilitation structure of rehabilitation services. the focus group was only conducted once and lasted for approximately 45 minutes. the same semi-structured guide was used for the in-depth interviews with the service providers. the service providers were interviewed at the rehabilitation centre at a time convenient for them. the interviews ranged from 45 minutes to one hour, the researcher conducted the interviews and took the field notes. two trained research assistants assisted in conducting interviews in afrikaans. data analysis the focus group discussion and the interviews were tape-recorded and transcribed verbatim. the data were thematically analysed, using content analysis as the strategy. the transcripts in afrikaans were professionally translated from afrikaans to english. the english transcripts were translated back into afrikaans to verify accuracy of the information. the data were coded into pre-determined themes according to the objectives of the study and related literature. initially, the transcripts were read a few times for familiarisation, to obtain a sense of the whole, and to become increasingly immersed in the data. during the first reading, open coding was applied to elicit all possible meanings of the texts. after open coding, sub-themes were created using patient-characteristic words (in-vivo) in order to stay close to the data and to fulfil the inductive approach of ensuring that the experiences of participants emerged from the data (sandelowski & barroso 2007). at this point, the lead author compared the main concepts, and identified sub-themes, with the findings of the contributing author (project leader), in order to cross-check the main findings. trustworthiness four qualitative criteria for trustworthiness were applied in this study: credibility, transferability, dependability and confirmability (lincoln & guba 1985) for quality of the data (shenton 2004). member-checking for this study was undertaken to ensure credibility of the information obtained from the fgd and in-depth interviews. this was achieved by summarising the information from the field notes of the participants at the end of the in-depth interviews, and that of the fgd, to ensure the clarity of the information provided by the participants. a code-recode procedure of analysing the data were used to ensure the dependability of this study. peer checks were conducted by the project leader, who had conducted qualitative studies herself and presented qualitative studies in seminars, at all stages of the analysis. the recorded interviews and discussions and their analyses were given to the project leader to ensure confirmability. ethical considerations written informed consent was obtained from each participant prior to the fgd and in-depth interviews, and they were ensured of their right to withdraw from the study at any time. the information sheet and consent form were translated from english to afrikaans for participants who were not fluent in speaking and reading english. in addition, the fgd participants verbally agreed that any information discussed in the focus group would be kept confidential. this made them conscious in advance of their ethical responsibilities. at the end of the fgd and in-depth interviews participants were again given the option to consent or to withdraw from the study. to preserve the anonymity of the participants’ information, the researcher used pseudonyms to identify participants p1–p11, and service providers sp 1–3, throughout the study, thus, concealing the participants’ names and other personal information provided. all participants consented to have their interview recorded. results top ↑ the themes were based on the participants’ experiences on the pre-determined thematic domains, such as: the service providers’ knowledge and skills training accessibility of services the interaction of patients with their service providers patients’ involvement and participation in rehabilitation provision of information structure and organisation of rehabilitation sessions. theme 1: perceptions of participants regarding service providers’ knowledge and skills knowledge regarding disability and treatment, as well as skills training amongst service providers, were the primary issues that arose under this theme. the findings of the study revealed that some participants expressed the view that the service providers always knew what they were doing and the conditions they dealt with. they also expressed that at times service providers managed patients based on the diagnosis made by the doctor; ‘the people treating us here are well educated, they are very good’ (p2); ‘i have not been here for a while but i experienced they knew what was wrong with me’ (p6); ‘i always knew i would be fine, because i felt these people [service providers] knew what they were dealing with’ (p7). although most participants trusted the service providers’ knowledge, the service providers experienced that they were not knowledgeable enough to deal with all types of disabilities, as expressed by one of the service providers in the following quote: ‘i lack some knowledge on certain conditions, like paediatrics, stroke, that we normally see here at this centre’ (sp1); ‘we do not have the expertise in all domains, so sometimes we may refer the patients because of this’ (sp2). in addition, some participants in the study experienced that their service providers were adequately skilled to deal with their conditions. whilst others revealed that their service providers misdiagnosed their conditions, which influenced the treatment. ‘i came to be treated for my back. when i started doing the exercises i felt it was not my back, but my hip. then i had to go back for x-rays’. (p9) ‘the same thing happened to me, they treated me for rheumatoid arthritis but it was not, it was osteoarthritis’. (p6) theme 2: participants’ experiences with accessibility to and within rehabilitation centres in both the fgd and in-depth interviews, there were some key issues that arose within this pre-determined theme. a lack of accessibility to suitable transport to attend the rehabilitation centre was expressed by both patients and service providers. although the service providers thought that the rehabilitation was accessible resulting from the presence of ramps and rails patients still experienced having problems with accessibility at the centre. participants in the current study expressed their concerns that were related to delayed and inaccessible transport to the rehabilitation facility, as expressed by participants: ‘the bus takes long to come. when it comes, we are already late for our appointments’. (p7) ‘… we don’t want to get wet during winter … if there was a car from the rehabilitation centre it would be a lot more comfortable and easier … then we would always make it to the appointment’ (p4) ‘... those benches in the waiting room are too low for patients to sit on’ (p9) ‘i don’t think patients struggle while accessing the centre because the gate is not far from the building. there is a ramp that wheelchair-users can use when coming in and out of the building. there is also a toilet handle for wheelchair-users while using the toilet’ (sp1) theme 3: participants’ experiences with the interaction of service providers with patients the participants’ experiences regarding their interaction with service providers were related to their being respected, appreciated and cared for. this was resulting from the fact that the service providers were able to provide time to relate to and communicate with them. the experiences of the participants in the current study were confirmed by their service providers’ responses when asked about their relationship with patients. this is illustrated in the quotations below. ‘… they are loving people and show respect towards the patients’ (p8) ‘they are always aware when you have pain and they react positively and loving throughout the treatment’ (p2) ‘i usually make sure that i am not only treating the patients throughout the session. i make time to relate to my patients so that i may avoid them seeing me as someone superior’ (sp1) ‘we make time for the patients, despite the workload. we try to see a patient as an individual and try to assist the patient the best we can. we talk to them regarding their disabilities’ (sp2) theme 4: participants’ experiences with participation and involvement in rehabilitation the participants and the service providers reported positive experiences with the patients’ participation and involvement in rehabilitation. the participants expressed that service providers gave them the opportunities to express personal goals for rehabilitation and also explained treatment procedures. the following quotations illustrate these experiences: ‘i had to sit with my therapist and tell her i want to be able to use my hand and build another room on to my house’ (p7) ‘… whenever i came here she (service provider) would ask me what i want to do’ (p10). ‘the first thing i do is that i ask my patients what they want to achieve before we start the treatment. both the patient and i work to achieve what he/she wants’ (spa). ‘i encourage patients to keep on exercising to keep them engaged in their rehabilitation, so that they can be able to do what they used to do before’ (sp3) theme 5: participants’ experiences with provision of information there was agreement between the services providers and participants’ experiences regarding the provision of information. both reported that information was provided using visual aids. the participants also expressed experiencing information provided by the service providers as detailed and relevant to their condition. ‘the service provider talked and explained to me, using the x-ray, exactly what was the problem i had and where it was in the body’. (p1) ‘… before i started my treatment here, which is very good compared to other places (other facilities), the therapist explained to me what was wrong with me. i received a form which explained my problem’. (p10) ‘… a stroke patient, he/she will be provided with information regarding his/her condition and the exercises that he/she needs to do at home’. (sp2) ‘there are different posters up in the rehab centre where they can get more information. they ask for any other information they need. we usually help them. we also have health promotion talks. we invite different health promoters to come and teach our patients about different health risks like hiv/aids’. (sp) theme 6: participants’ experiences with structure and organisation of rehabilitation sessions the main aspects that were highlighted by both the patients and the service providers within this theme were length of sessions and appointment schedules. the participants wanted longer treatment sessions, whilst the service providers highlighted that they could not increase frequency and length of rehabilitation sessions resulting from a lack of staff. ‘i just want slightly longer sessions with them [service providers] (p4) ‘… and we need them [service providers] to add more days to see us because i have also heard other patients complaining about it’. (p7) ‘i sometimes need more time and capacity to book them (patients) in because we are under staffed’. (sp2) ‘… but during november and december … there are waiting lists for patients. there no students at the centre to help, but we try our best to accommodate all the patients even though it’s not easy’. (sp3) discussion top ↑ the aim of the study was to explore the experiences of both patients and service providers with multi-disciplinary rehabilitation services at a community-based rehabilitation centre. the current study findings revealed that some participants expressed that the service providers were knowledgeable in regard to the conditions they managed. these findings are consistent with those in a qualitative study conducted in sweden by wottrich et al. (2004) which reported that patients trusted their physiotherapists’ competencies. whilst service providers reported that they lacked knowledge and training in some disabilities, their patients demonstrated a level of trust in the competency and knowledge of their service providers. it is not unusual that service providers could develop some gaps in their scope of practice. a lack of knowledge by service providers about the patients’ disabilities could be the result of inadequate knowledge (wottrich et al. 2004) and training (darrah, magil-evans & adkins 2002). hence, training is one of the ways of developing service providers’ skills and competencies regarding patients’ conditions and treatment (morrison, george & mosqueda 2008). the appropriate, accountable and ethical response to this mandates that these service providers seek some remedial steps to address the gaps they have in their knowledge. the health professionals council of south africa requires health professionals to identify areas that require some improvement in their scope of practice, and to yearly renew their licences, which is linked to their attendance at refresher courses. it is important that service providers are knowledgeable and trained to manage patients, as this would affect the outcomes of the patients’ treatment (al-abdulwahab & al-gain 2003). both services providers and patients agreed that challenges existed with accessing the centre resulting from a lack of appropriate transport. the participants expressed that they had challenges related to limited availability and inaccessibility of transport. these findings are consistent with those of kahonde et al. (2010) and de la cornillere (2007), who reported that patients in the western cape, south africa, encountered problems of inaccessible and inefficient transportation services to attend rehabilitation appointments. the lack of transport could lead to patients not attending appointments (un 2007). the issue of transport points to a need for a coordinated response between the departments of health and transport. a difference of opinion existed between the patients and service providers regarding accessibility within the facility. service providers expressed the opinion that the centre was accessible but patients experienced transportation to the rehabilitation centre as a challenge. the presence of ramps and toilet handles could have resulted in service providers thinking that the centre was accessible. rehabilitation service providers are required to make an audit of the accessibility of the environment. this audit should be conducted in consultation with persons with disabilities to ensure that their needs are met. both patients and service providers reported that a positive relationship existed between patients and service providers at the centre. the findings regarding the interaction of service providers with patients are consistent to those of darrah et al. (2002) who reported on the perceptions of adults and adolescents and their families regarding service delivery. the findings of darrah et al.’s (2002) study reported that patients were respected, cared for and supported across all service areas. previous literature has reported that patients expressed experiencing service providers as unfriendly when they were not prepared to invest time to relate and have a conversation with them (hills & kitchen 2007). patients and service providers had positive opinions regarding the patients’ participation and involvement in rehabilitation. patients in fgd reported that their service providers gave them opportunities to identify their goals and explained the procedures of the treatment. this was confirmed by the service providers in their interviews. this finding was in contradiction to findings in a study conducted by (wottrich et al. 2004) who reported that physiotherapists claimed that patients were actively involved in the physiotherapy sessions, whilst the patients denied their involvement. both patients and service provides concurred that visual aids were used to provide patients with information about certain conditions. in addition participants also reported that they received most of the information they needed from their service providers. the information regarding the patients’ disability and the treatment provided was well explained by the service providers. the inclusion of education is an important component of patient management as it facilitates adherence to treatment and also decreases mortality and morbidity (lynggaard et al. 2014). a lack of patient education could result in patients being misinformed and lacking knowledge about their disabilities (leith, phillips & sample 2004). both patients and service providers expressed the need to increase time spent in rehabilitation. these findings are similar to those of lopopolo (2001) and wottrich et al. (2004), who reported that patients were concerned with the limited time they spent in therapy. in a study conducted in the uk, patients also encountered problems of long waiting periods. this affected both the patients’ health and their satisfaction with the rehabilitation services (tod, lacey & mcneill 2002). in south africa primary healthcare services have been available to public health care users. access to rehabilitation services, however, eludes the majority of disabled south africans as it is characterised by congestion, long waiting times and staff who are overwhelmed by the congestion. it is in this regard that future rehabilitation research should focus on exploring the impact of family training and home based rehabilitation programmes, in alleviating patient load and improving patient care. limitations of the study this study presents some limitations. the study adopted focus group discussions which involved groups of people gathering the data related to the patients’ experiences regarding the rehabilitation services. the data were, therefore, not collected in a participant’s natural setting, which could have curtailed the freedom to speak freely. furthermore, the targeted selection excluded those with speech and hearing impairments. for this reason the current study information cannot be generalised beyond the boundaries of the out-patient rehabilitation centres and the specific diagnostic groups. future studies should include all representative diagnostic groups. recommendations top ↑ based on the design and limitations of the study, we identified the need for health-policy makers to improve the means of ensuring that rehabilitation facilities are adequately resourced to provide appropriate levels of quality care. on a macro-level, the results indicate that the government sectors in south africa need to develop public transport systems that are accessible and affordable to persons with disabilities, to assist them to attend rehabilitation sessions. increased home-based programmes could also be implemented to increase access to rehabilitation services. conclusion top ↑ patients and service providers had similar experiences regarding accessibility of rehabilitation services, patient education and intensity of rehabilitation. they differed with regards to knowledge and skills of service providers and accessibility within the rehabilitation centre. the experiences expressed highlighted the need to improve rehabilitation services in terms of increasing the capacity of service providers, and providing transport services for persons with disabilities. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions the study was part of a.k.’s (university of rwanda) master’s thesis, which was part of a bigger study. the bigger study evaluated the rehabilitation at four sites in the western cape. all the authors: c.g. (stellenbosch university), g.m. (stellenbosch university), n.m. (university of the western cape), c.j. (karolinski health institute), s.s. (stellenbosch university), a.k. (university of the western cape) were researchers on the bigger project and were therefore involved in the conceptualisation of the study and developing of instruments. n.m. and a.r. 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c.h., engardt, m., tham, k. & koch, l.v., 2004, ‘characteristics of physiotherapy sessions from the patient’s and therapist’s perceptive’, disability and rehabilitation 26(20), 1198–1205. http://dx.doi.org/10.1080/09638280410001724889 abstract introduction methodology results discussion clinical implications conclusion acknowledgements references about the author(s) olaitan j. balogun department of health and rehabilitation sciences, physiotherapy division, stellenbosch university, cape town, south africa oyeronke o. bello division of pediatrics, college of medicine, university of ibadan, ibadan, nigeria loveness a. nkhata department of health and rehabilitation sciences, physiotherapy division, stellenbosch university, cape town, south africa joseph conran department of health and rehabilitation sciences, physiotherapy division, stellenbosch university, cape town, south africa citation balogun, o.j., bello, o.o., nkhata, l.a. & conran, j., 2025, ‘maternal knowledge and attitude towards unintentional childhood injury among children under five’, african journal of disability 14(0), a1617. https://doi.org/10.4102/ajod.v14i0.1617 original research maternal knowledge and attitude towards unintentional childhood injury among children under five olaitan j. balogun, oyeronke o. bello, loveness a. nkhata, joseph conran received: 15 nov. 2024; accepted: 06 mar. 2025; published: 15 may 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: childhood injuries resulting in disability represent a critical global health challenge, particularly for children under five and their families. unintentional injuries, including falls, fractures, burns, scalds, and poisoning, pose significant risks. in oyo state, nigeria, limited maternal knowledge about these injuries potentially contributes to inadequate prevention strategies. objectives: the study examined unintentional childhood injuries among children under five by identifying nature of injury, assessing maternal knowledge and attitudes, and exploring associations between socio-demographic factors and their knowledge and attitude. method: a cross-sectional survey was conducted across two hospitals, employing a structured questionnaire to collect data on injury characteristics, maternal knowledge, and attitudes. statistical analysis using spss version 23.0 involved percentage calculations, standard deviation, fisher’s exact test and chi-square test to evaluate demographic variable associations at a 5% significance level. results: findings revealed falls, scalds, soft tissue damage, poisoning, and burns as the most frequent unintentional injuries necessitating hospitalisation. the research uncovered a significant deficit in maternal knowledge about childhood injuries, accompanied by predominantly negative preventive attitudes. mothers’ age, religious background, and educational attainment demonstrated statistically significant correlations with knowledge scores. conclusion: the study exposes critical gaps in understanding and preventing childhood injuries, emphasising the urgent need for targeted educational interventions across community stakeholders to mitigate risks and improve child health outcomes. contribution: the study contributes to the existing literature, identified specific knowledge deficits regarding childhood injury prevention and factors that influence preventive knowledge and attitude. it also provides an evidence-base for developing appropriate educational interventions targeting vulnerable population. keywords: unintentional injury; maternal; knowledge; attitude; under-fives; nature of injuries. introduction childhood injuries are an escalating global health concern, particularly affecting children from the age of one, contributing significantly to disability and mortality rates (who & unicef 2005). unintentional injuries encompass a range of incidents, with falls resulting in fractures and trauma being the most prevalent, followed by road traffic accidents, drowning, poisoning and burns (jullien 2021). among children under five, these injuries pose a particular concern, with the unintentional injury mortality rate reaching 73 per 100 000, resulting in 3654 years of life lost per 100 000 population. falls resulting in fractures and trauma represent the most common form of unintentional injury in this age group, accounting for approximately 40% of all emergency department visits for children under five (world health organization [who] 2020). the risk of severe injury from falls is particularly high during developmental stages when children are learning to walk and climb, with the potential for long-term disabilities including traumatic brain injuries and permanent physical impairments. these injuries can be intentional or unintentional, with the latter including incidents such as road traffic accidents, drowning, poisoning, burns and falls (jullien 2021). in children under five, the unintentional injury mortality rate is alarmingly high, at 73 per 100 000, resulting in a loss of 3654 years of life per 100 000 population. in industrialised nations, these injuries are the leading cause of death and disability for this age group (who 2015). the who reports that child injury death rates are 3.4 times higher in lowand middle-income countries (lmics) compared to high-income countries, with significant variations based on injury type. unintentional injuries are typically classified into categories: poisoning, burns, drowning, falls and transport-related incidents (who 2020). these injuries occur because of excessive exposure to various forms of energy, including mechanical, thermal, electrical, chemical or radiant (centers for disease control and prevention [cdc] 2012). they are often predictable and preventable through proper safety measures (global burden of diseases 2020). children’s natural curiosity and lack of awareness of risks make them particularly vulnerable to injuries, which place a significant burden on families and communities and can hinder development. parents and caregivers play a crucial role in preventing these injuries, but a lack of knowledge often heightens the risk, contributing to rising mortality rates among children under five (jullien 2021). common accidents include vehicle-related incidents, poisoning, falls, thermal injuries and drowning. despite improvements in child health care leading to a decline in infectious disease-related mortality (mortality and causes of death collaborators 2015), unintentional injuries remain a critical concern. in nigeria, poisoning is a significant cause of morbidity and mortality among children, often resulting from the ingestion of harmful substances. it accounts for 10% of unintentional injuries in children in lmics, with 15% occurring in those under five, though many cases go unreported (kavinda chandimal dayasiri, jayamanne & jayasinghe 2017). factors contributing to childhood poisoning include children’s impulsiveness and curiosity, as well as environmental risks such as proximity to harmful substances. addressing childhood injuries is essential for achieving the sustainable development goal (sdg 3) related to good health and well-being. this includes enhancing parental education and awareness regarding injury prevention strategies (united nations bulletin 2023). poor supervision and a lack of knowledge among mothers significantly increase the risk of unintentional injuries, highlighting the need for improved education and practices (siu et al. 2019). research indicates that maternal education, age and knowledge are critical factors influencing childhood injury prevention (inbaraj et al. 2020). in addition, the number of siblings, or parity, can affect the level of supervision children receive, though it does not significantly correlate with the incidence of home accidents (shinde, partel & chavan 2022). this study aims to explore maternal knowledge and attitudes towards unintentional childhood injuries among children under five in ogbomoso, oyo state, nigeria. the objectives include identifying common types of unintentional injuries, assessing maternal knowledge and attitudes regarding these injuries, and examining the association between socio-demographic characteristics and respondents’ knowledge scores. theoretical framework protection motivation theory (pmt), developed by rogers in 1975 and revised in 1983, explains how persuasive communication influences behaviour by focussing on the cognitive mechanisms that determine whether individuals adopt recommended protective behaviours. in the context of this study, pmt provides a framework for understanding how mothers’ perceptions of injury risks and their ability to prevent them influence their protective behaviours. the theory’s key components directly inform our research objectives. perceived severity of threat refers to mothers’ understanding of the consequences of injuries, while perceived vulnerability relates to their assessment of the likelihood of such injuries occurring. response efficacy reflects their belief in the effectiveness of preventive measures, and self-efficacy represents their confidence in their ability to implement these strategies successfully. this theoretical framework guided our methodology, particularly in developing survey instruments that assess both knowledge (threat appraisal) and attitudes (coping appraisal) regarding unintentional childhood injuries. protection motivation theory evolved from the health belief model that rogers initially proposed and serves as a framework for understanding health behaviour change in response to perceived risks. according to pmt, individuals are more likely to engage in protective behaviours when faced with threats. the theory emphasises the concept of ‘protection motivation’, suggesting that fear-inducing messages can effectively encourage individuals to take preventive action against potential harm. the theory posits that four key beliefs enhance an individual’s intention to protect themselves. these beliefs include the perceived seriousness of the threat, the belief in one’s likelihood of experiencing the threat, confidence in the effectiveness of the protective behaviour and the belief in one’s capability to successfully perform the recommended behaviour. conversely, pmt also states that perceived costs associated with adopting risk-reduction behaviours and perceived benefits of engaging in risk-enhancing behaviours can weaken protective intentions. in the context of unintentional childhood injuries, pmt suggests that information about the potential consequences of such injuries, like falls or poisoning, could heighten fear and amplify mothers’ perceptions of the severity and likelihood of these injuries affecting their children. if mothers feel confident in their ability to prevent these injuries and believe that changing their protective behaviours will lead to positive outcomes, they are likely to express a stronger intention to adopt more protective behaviours. methodology research design a descriptive cross-sectional survey research design was employed in this study to establish a baseline understanding of the nature of unintentional injuries and the knowledge and attitudes of mothers with children under the age of five. this design is appropriate as a foundational step towards developing targeted primary and secondary prevention programmes. study population the target population for this study comprised all mothers of children under five attending two infant welfare hospitals in ogbomoso, oyo state, nigeria, from november 2023 to december 2023. hospital records indicate that approximately 600 children with unintentional injuries received care in the general outpatient department, accident and emergency unit between 01 january 2023 and 30 september 2023. study setting the research was conducted at two teaching hospitals in ogbomoso: bowen university teaching hospital (buth) and lautech teaching hospital. these institutions serve as referral centres, providing comprehensive health care services including family medicine, diagnostic imaging, cancer care, emergency services, dialysis, physiotherapy, nursing education, rehabilitation and paediatric intensive care. sample size and sampling technique a purposive, convenient sampling technique was employed to select two teaching hospitals as referral centres for unintentional childhood injuries (uci) within the locality. this approach, consistent with methodological recommendations by patton (2015) for targeted research in health care settings, ensured that the sample included mothers directly affected by such injuries. a total of 200 mothers of children under five participated in the study, providing a representative sample for analysing knowledge and attitudes towards unintentional childhood injuries. the sample size of 200 was determined based on several factors, including the prevalence of unintentional childhood injuries in the target population, resource availability and the need for statistical power (peden et al. 2008). hospital records indicated that approximately 600 children with unintentional injuries were treated between january and september 2023, informing estimates of likely participant numbers. this sample size was chosen to ensure sufficient power for detecting significant differences and associations while being practical given the available time and resources for data collection and analysis. ultimately, it achieved a balance between statistical relevance and manageability and was calculated to maintain an acceptable margin of error, ensuring the reliability of the survey results (dillman et al. 2014). instruments for data collection researchers developed the knowledge of unintentional childhood injuries scale (kuci) based on a review of relevant literature, including guidelines from the cdc (2012) and the national center for injury prevention and control’s action plan for child injury prevention. this scale was designed to gather information on mothers’ knowledge regarding unintentional childhood injuries. respondents were provided with three response options: ‘yes’, ‘no’ and ‘i do not know’. in addition, the attitude towards unintentional childhood injuries (atuci) questionnaire was employed to assess mothers’ attitudes. responses were scored on a 4-point modified likert scale, with the following options: strongly agree (sa), agree (a), disagree (d) and strongly disagree (sd). points were allocated as follows: sa = 4, a = 3, d = 2 and sd = 1. the initial scale was tested for validity and reliability, with coefficients ranging from r = 0.75 (p < 0.001) for the kuci and r = 0.80 (p < 0.001) for the atuci. in terms of validity, factor analysis, which aims to test the dimensionality of the scale, revealed that the kuci and atuci demonstrated strong construct validity. procedure for data collection to ensure data accuracy, the questionnaire was administered by the researchers along with four trained assistants who were health attendants familiar with the study. prior to data collection, appropriate permissions were obtained from relevant authorities, including heads of units, supervising doctors, nurses and health attendants. the data collection process began with a briefing session for the research team and assistants to review the study objectives, ethical considerations and the administration of the questionnaires. this ensured that all team members were well prepared to address participants’ questions and provide clear instructions. the questionnaires were distributed in a private setting to maintain participant confidentiality and encourage honest responses. each participant received a brief explanation of the study’s purpose, the nature of the questions and their right to withdraw at any time. to facilitate a high response rate, the questionnaires were self-administered, and research assistants were available to assist participants with any difficulties they encountered while completing the forms. after completion, the questionnaires were collected immediately to ensure a high retrieval rate. the researchers monitored the collection process closely to address any potential issues and to verify that all ethical protocols were followed throughout the data collection process. ethical considerations the study adhered strictly to ethical guidelines for research involving human subjects, as outlined in the declaration of helsinki, ethical approval to conduct this study was obtained from lautech teaching hospital and lautech teaching hospital research ethics committee on 29 october 2023 (no. 12-07/2023), ensuring the protection of participants’ rights, confidentiality and well-being throughout the research process. informed consent was secured from all participants, with both written and oral consent obtained prior to their involvement in the study. this comprehensive approach ensured that participants were fully aware of the study’s purpose, procedures, potential risks and their right to withdraw at any time without any repercussions. data analysis data analysis was conducted using frequency counts, simple percentages, pie charts, means, standard deviations and chi-square tests (fisher’s exact test) to assess associations between variables. these statistical methods facilitated a comprehensive understanding of the knowledge and attitudes of mothers regarding unintentional childhood injuries. results participants’ demographic descriptions this demographic overview highlights the characteristics of mothers with children under five, providing insights into their age, parity, religious affiliation and educational background. table 1 shows that many respondents (50%) were aged between 30 years and 39 years, indicating a trend towards older mothers in this demographic. among the participants, 33% were primiparas (first-time mothers), while 67% were multiparas (those with more than one child). in addition, a significant portion of the mothers (81%) were identified as christians. notably, the majority (59%) had not attained formal education. table 1: participants’ demographic descriptions. common types of unintentional injuries among under-five children in ogbomoso, oyo state figure 1 shows that falls, particularly those causing multiple fractures and trauma, are the most common unintentional injuries among under-five children in oyo state, with 110 respondents (55.0%) reporting such incidents. in addition, 40 respondents (20.0%) reported cases of burns requiring treatment and hospitalisation, while another 40 respondents (20.0%) noted severe falls leading to scalds and soft tissue damage. figure 1: common types of unintentional injuries among under-five children. maternal levels of knowledge about unintentional childhood injuries as shown in table 2, the overall weighted mean value of 1.614 falls below the criterion mean of 2.0, indicating a low level of knowledge regarding unintentional childhood injuries among this demographic. the results reveal trends in the knowledge of unintentional childhood injuries among mothers of children under five in ogbomoso, oyo state. a significant number of respondents, 99 (45.0%), were unaware that unintentional childhood injuries are preventable. furthermore, 116 (58.0%) respondents did not recognise common examples of these injuries, such as falls, poisoning, burns and drowning. more than half of the mothers (55.0%) disagreed that a lack of parental supervision is a major risk factor contributing to childhood injuries. in addition, a troubling 70.0% of respondents were not aware that childhood injuries can sometimes be fatal. about 80.0% of mothers did not believe that medications should be kept out of children’s reach, highlighting a critical gap in safety awareness. table 2: maternal levels of knowledge about unintentional childhood injuries. maternal attitudes towards unintentional childhood injuries the analysis of maternal attitudes towards unintentional childhood injuries reveals troubling trends among mothers of children under five in ogbomoso, oyo state. the data in table 3 indicate a strong belief in divine protection, with over half of the respondents (59.5%) agreeing that only god can safeguard children, which leads to a diminished focus on injury prevention. in addition, more than two-thirds (69.5%) believe that no amount of supervision can prevent injuries, reflecting a fatalistic view of child safety. furthermore, 70% of mothers reported that they pray for their children’s safety each morning, suggesting a reliance on spiritual intervention over proactive measures. the overall weighted mean of 1.399, falling below the criterion mean of 2.5, indicates a negative attitude towards preventing unintentional childhood injuries. table 3: maternal attitudes towards unintentional childhood injuries. association between knowledge scores and socio-demographic characteristics the association between respondents’ knowledge scores regarding unintentional childhood injuries and their socio-demographic characteristics is summarised in table 4. the analysis indicates that significant associations were found between knowledge scores and age, religion and level of education (p ≤ 0.05). table 4: association between knowledge scores and socio-demographic characteristics. discussion the findings of this study, analysed through the pmt framework, provide critical insights into maternal knowledge, attitudes and behaviours concerning unintentional childhood injuries. this discussion integrates our findings with current literature and theoretical perspectives to highlight key themes and intervention strategies. our study identified falls resulting in fractures and trauma as the most common unintentional injuries, accounting for 55% of cases, followed by burns and scalds with soft tissue damage, each representing 20%. this distribution aligns with global epidemiological data from the who global injury report of 2024 and reflects developmental vulnerabilities and environmental risk factors prevalent in lowand middle-income countries, as highlighted by kumar et al. (2019), as well as kopits and cropper (2005). several factors contribute to the high prevalence of falls, including the developmental stages of young children, hazardous residential environments, limited awareness of preventive measures and inadequate supervision, as documented by thompson et al. (2013), adeniran et al. (2008), rahman, andersson and svanström (1998), abd el-aty et al. (2005), and chen et al. (2005). despite the high incidence of falls, only 40.5% of mothers recognised that falls could lead to permanent disabilities. this gap in risk assessment suggests a misalignment between actual threats and perceived severity, a pattern also observed in studies conducted in other developing nations by rahman et al. (2023) and xiang et al. (2019); addressing this misperception is essential for improving protective behaviours. a significant association was found between maternal knowledge scores and socio-demographic characteristics, with a statistical significance of p ≤ 0.05. this finding supports research by ibrahim et al. (2024) and ahmed et al. (2022), which indicates that maternal education significantly influences injury prevention awareness and practices. educated mothers demonstrated higher awareness of injury risks, with 72% showing understanding compared to 28% among those with lower educational attainment. formal education also correlated with better preventive behaviours, with a statistical significance of p ≤ 0.01, and 65% of educated mothers demonstrated greater proficiency in first aid knowledge compared to 35% among less-educated mothers, aligning with findings by aktürk (2016). this correlation underscores the need for targeted education programmes to enhance threat awareness and response efficacy. religious and cultural beliefs emerged as significant influences on injury prevention attitudes. most mothers, accounting for 59.5%, prioritised divine protection overactive preventive measures. this finding aligns with research by okonkwo et al. (2023) and nduagubam et al. (2022), who documented similar patterns in west african contexts. within the pmt framework, this perspective impacts response efficacy, as mothers may perceive spiritual protection as more effective than tangible preventive measures. culturally sensitive interventions are needed to integrate traditional beliefs with evidence-based safety practices. burns and scalds accounted for 20% of reported injuries, presenting severe long-term health risks. alarmingly, 80% of mothers demonstrated poor knowledge regarding burn prevention, particularly the importance of keeping hazardous materials out of children’s reach. this finding aligns with research by farzan et al. (2023) and el-sabely, yassin and zaher (2014), which reported similar knowledge gaps in developing countries. the combination of limited awareness and unsafe household practices, as also noted by riyadh et al. (2013), underscores the need for targeted burn prevention programmes that emphasise both risk identification and behavioural change. applying pmt to our findings highlights critical aspects of maternal risk perception and protective behaviours. regarding threat appraisal, only 30% of mothers recognised the potential severity of injuries, and 45% acknowledged their children’s susceptibility to harm, consistent with findings by lee, walia and forbes (2012). concerning coping appraisal, response efficacy remained low, with only 40% believing in the effectiveness of preventive measures, while self-efficacy was even lower at 35%, indicating limited confidence in injury prevention strategies, as similarly reported by isaac et al. (2022). given these insights, a multi-faceted intervention approach is necessary. educational programmes should focus on structured knowledge enhancement initiatives that emphasise injury prevention strategies, culturally adapted training materials, and hands-on skills development, as recommended by rabiu and ogundipe (2022). community-based support should involve the formation of local support networks for mothers, collaborative safety initiatives and active engagement of community health workers. policy recommendations should include strengthened safety regulations, improved healthcare accessibility, and the integration of mandatory safety education in maternal and child health programmes, as suggested by samah (2022). clinical implications findings from this study suggest several key areas for clinical intervention. health care provider training should be enhanced to include assessment of household safety risks, culturally competent counselling and integration of religious perspectives in safety education. preventive care programmes should incorporate routine safety assessments during well-child visits, targeted interventions for high-risk groups and expanded community outreach programmes. resource development should focus on the creation of culturally appropriate safety education materials, multilingual safety guides and visual aids to enhance injury prevention awareness. based on our findings, several recommendations are proposed. educational initiatives should prioritise the development of comprehensive safety education programmes, integration of cultural and religious perspectives and ongoing evaluation of intervention effectiveness. health care improvements should focus on enhanced injury surveillance systems, improved emergency response protocols and better documentation of injury patterns. community engagement should involve the establishment of mother support groups, local safety awareness campaigns and collaborative community-based prevention programmes. conclusion this study highlights falls, burns and scalds as the predominant unintentional injuries among under-five children in ogbomoso, nigeria. using the pmt framework, critical gaps in both threat awareness and coping strategies among mothers were identified. the significant associations between maternal education, knowledge and attitudes towards injury prevention underscore the need for targeted interventions addressing both cognitive and behavioural aspects of injury prevention. future efforts should focus on developing structured education programmes tailored to different sociocultural contexts, integrating religious beliefs with evidence-based prevention strategies and fostering community support systems. a combination of educational, clinical and policy-driven interventions is essential to enhance maternal protective behaviours and reduce the burden of childhood injuries in nigeria and similar settings. acknowledgements appreciation to the nursing mothers in oyo state, nigeria, for their willing participation and valuable contributions to this study. special thanks are extended to the staff of ladoke akintola university of technology (lautech) and bowen university teaching hospital (buth). competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all the authors were instrumental in the effective implementation of this project. the initial draft of this manuscript was prepared by o.j.b. the conceptualisation and strategic planning of our research were conducted jointly by o.o.b., l.a.n. and j.c. the final version of the manuscript underwent a thorough evaluation and received the approval of all the authors. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data are available from the corresponding author, o.j.b., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references abd el-aty, n.s., moftah, f.m., fahmy, h.d. & hassanen, r.h., 2005, ‘assessment of knowledge and practice of mothers toward home accidents among children under six years in rural areas in assiut governorate’, assiut university bulletin for environmental researches 8.2(8), 11–29. https://doi.org/10.21608/auber.2005.150563 adeniran, j.o., taiwo, j.o., yusuf, a.s. & abdur rahman, l.o., 2008, ‘childhood intussusception in ilorin: a revisit’, african journal of paediatric surgery 2, 4–7. ahmed, a., hasanul, b.s.m., shojon, m., mahdi, h., enayetur, r. & mohammad, s.h., 2022, ‘accidental poisoning in 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organization press, geneva. world health organization, 2020, global status report on child injury prevention, who publications, geneva. world health organization, 2021, stakeholders wade in to contain road accidents and attendant effects on nigeria, world health organization press, geneva. xiang, l., wang, k., miao, l., kang, l., li, x., zhu, j. et al., 2019, ‘injury-related mortality among children younger than 5 years in china during 2009–2016: an analysis from national surveillance system’, injury prevention 25(1), 60–66. https://doi.org/10.1136/injuryprev-2018-042853 abstract introduction literature review research method conclusion acknowledgements references about the author(s) johanna c. janse van rensburg-welling national institution for development and training npc, worcester, south africa department of post graduate studies, faculty of education, the da vinci institute for technology management, johannesburg, south africa jean e. mitchell department of post graduate studies, faculty of education, the da vinci institute for technology management, johannesburg, south africa department of research, national institution for development and training, worcester, south africa citation janse van rensburg-welling, j.c. & mitchell, j.e., 2022, ‘the development of a suitable training model for students with disabilities at a training institution in south africa’, african journal of disability 11(0), a949. https://doi.org/10.4102/ajod.v11i0.949 original research the development of a suitable training model for students with disabilities at a training institution in south africa johanna c. janse van rensburg-welling, jean e. mitchell received: 14 sept. 2021; accepted: 13 aug. 2022; published: 09 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the large south african population of people with disabilities presents unique challenges for training organisations because there is no training model that accommodates the demands of all disabilities. the site of the research was a private, nonprofit training institution with disability-friendly infrastructure which did not adequately prepare students for employment. objectives: the intention was to interrogate training models used at the institution, from the perspectives of students, facilitators and prospective employers. as there was no suitable assessment instrument, one that was fit for purpose was developed. the adaptable component-based assessment model (aca model) was the result. method: a case study using mixed methods was employed. the interpretive research paradigm allowed for purposive sampling. this article reports on the qualitative first phase of the study. the aca model was developed, and iterative applications provided information about areas that needed improvement before the second phase was initiated. results: the results all indicated that the existing programmes needed to be evaluated with the view for improvement. various training models can be used to train students with disabilities, but they need to be assessed to ensure that they are integrated, holistic and student centred. because different accommodations need to be taken into account for various disabilities, the ideal assessment model needs to be adaptable. conclusion: the aca model is an appropriate assessment model as it is based on individual learner affordances, workplace affordances, the holistic development of students and workplace absorption. contribution: the research contributes to knowledge and practice as the resultant aca model can be used to the benefit of students and education institutions. the model can be tailored to the needs of all groups of students, especially those with disabilities. keywords: training; assessment; training models; student-centred; accommodation; south africa. introduction globally, persons with disabilities have limited access to education, training and employment (maart, amosun & jelsma 2019). this is an important issue because it influences the achievement of a number of the united nations sustainable development goals that aim to eradicate poverty (vornholt et al. 2018). the bill of rights, enshrined in the south african constitution (rsa 1996) and the national skills development strategy (rsa 2016) are just two of many strategies and laws that govern education, training and employment in south africa. unfortunately, the acts, regulations and codes of best practice have not yet been implemented extensively enough for their impact to be measured (human rights watch 2019, 2020). in south africa, as in many other developing countries, being disabled increases a person’s chance of being unor under-educated, unemployed and extremely poor (rsa 2018, 2019). while it is accepted that disabilities are very complex and worthy of research (bolt 2015), the purpose of the research reported here was to create a way to analyse training programmes offered by training institutions that cater for students with various disabilities. the information gained from this investigation informed the development of a model to analyse programmes offered not only at the target institution but also at other institutions that offer training programmes to people with disabilities. all programmes should meet the vision and mission of a training institution. at the same time, they should meet the complex demands and costs of providing education to people with disabilities effectively and efficiently while ensuring equal opportunities, economic growth and innovation (unesco 2020). implementing training assessment or evaluation models are ways to achieve these goals. the site of the research was a private, non-profit institution registered as a public benefit organisation; its disability-friendly infrastructure made it ideal to train and support students with disabilities. it also acknowledged and respected disability culture (bedoin 2019). most enrolled students came from needy households who depended on social grants and could not afford to pay fees; thus, the institution needed to operate in an educationally and financially responsible manner, without succumbing to a culture of mcdonaldisation where efficiency, calculability, predictability and, particularly, standardisation (ritzer 2013) are the benchmarks. at the time of the research, the programmes offered by the training department at the institution did not serve all the education and employment needs of students and were not financially sustainable. the actual needs of industries for which students were trained were not known. it also became evident that the training model in use did not adequately prepare students to enter employment in nondisabled situations in the 21st century. it was imperative to interrogate training models used at the institution and to find a way to provide training that would best suit students with disabilities, the training department and prospective employers. the main research question asked how the training department could change the way in which it offered programmes to provide training that would lead to students gaining meaningful access to workplaces. unfortunately, there was no suitable evaluation tool to assess the programmes. in this article, we focus on an analysing instrument that was developed for this purpose. literature review in south africa, there are many people with disabilities who have limited access to education and training. their chances of access to employment are lower than those of nondisabled people (human rights watch 2020; rathmann 2019). each disability presents a unique challenge to the person affected and to those who provide appropriate training and support (camarata et al. 2018). achieving and sustaining post-school education of high quality for students with disabilities needs the input from many stakeholders, including education institutions, students and prospective employers. curricula should not reflect the homogenisation suggested by mcdonaldisation (crossman 2021) but should be responsive to social contexts (lubbe, wolvaardt & turner 2020). the focus should move from learning ‘for work’, to ‘learning at work’ and even ‘learning through work’ (garwe 2020:193). businesses that employ persons with disabilities require them to have the necessary skills and competencies to do their work (garwe 2020). in addition, employers usually expect employees to have intangible, meta competencies like being able to self-regulate, being flexible and able to adapt to various work and social environments, anticipating and learning (heery & noon 2017). yet despite advances in diversity and inclusion practices in the workplace, the entry and progression of people with disabilities in the workforce remain problematic and employers have negative opinions of their work-related abilities (bonaccio et al. 2020). indeed, vornholt et al. (2018) argue that most employers hold unsupported stereotypical beliefs. it seems as if employers often lack the values that lead to respecting democratic, professional, ethical and people values. thus, they fail to build respectful, diverse and inclusive workplaces where they hold themselves and their employees accountable for their actions (western cape government 2020). it seems that when employers do employ persons with disabilities, they tend to focus on providing physical and structural accommodations or affordances but ignore the emotional and psychological well-being of their employees (vornholt et al. 2018). in addition, it seems as if prospective employers are often not considered in training programmes; thus, the needs of future employers are unknown. the challenge in the present research was to find an instrument that could serve as a benchmark by which to analyse and assess the success of the training models used at the institution so that informed decisions would guide future programme adjustments. the instrument needed to provide consistent information and be applicable to future programme development. in addition, the instrument had to include all the components needed in the training and work placement competencies while providing adequate accommodations for students with disabilities. the benchmark instrument also had to comply with the laws of the land, offer meaningful education, prepare students for the world of work and prepare workplaces to welcome and accommodate students and employees with disabilities (lubbe et al. 2020). when reference is made to affordances or accommodations for disabled employees in the workplace, it usually means modifications that have been made to adapt to the special needs of an individual or group. it can also refer to adaptations made in workplaces to afford employees opportunities for learning (dokumaci 2020). the aim of education for employment of students with disabilities should include a practical approach to a comprehensive learning system where physical, social, emotional, intellectual and spiritual growth are taken into account. students should also be encouraged to be reflective learners. in other words, they should be encouraged to review their own learning in relation to their own lives and work environments to make meaning of the experience (brockbank, mcgill & beech 2017). training ecosystems consist of the people, procedures and instruments used by an organisation to develop and support learning of theory and subject content and performance in the workplace (benedicks 2018). training ecosystems also allow participants (facilitators and students) to select the most appropriate technologies to help them accommodate their individual disabilities (carlson 2019). at the same time, evaluation of formal, informal, work-based and performance-supported training and post-training is necessary for the continued success of an institution. such evaluation can determine the effectiveness of various components of the training and development programmes on offer (alsalamah & callinan 2021). such an ecosystem supports learning and performance through social learning and knowledge sharing, performance support and repeated reinforcement of training and learning (benedicks 2018), in fact, all the important elements in the education of students with disabilities. models that are meant to evaluate training are frameworks that provide a system or method to analyse training. they tend to focus on the success of the training and learning that has taken place, applicability to available employment, impact of the training, return on investment and improvements that can be made (deller 2021). while there are several training models used in formal and informal education and training settings (aquino 2016; deller 2021), none of them was found to be suitable to address the complexities of the education of disabled persons at the institution or within the south african education and training system. thus, other education and industry models were consulted. the new world kirkpatrick model was regarded as the most suitable for this research and was selected to guide the development of components against which the existing training could be assessed (alsalamah & callinan 2021). this decision was made after other models and theories had been interrogated. the researchers did not find the context, input, reaction, outcome (ciro) model of warr, bird and rackham to be useful in this instance because it focuses on assessing the training of businesses managers and not training of unemployed people with disabilities (harapa 2021). in the same way, the success case method (scm) of brinkerhoff (2005) was regarded as inappropriate because it was too wide for the purpose of the research. while the phillips model is similar to that of kirkpatrick, it was also regarded as unsuitable because it includes a cost–benefit aspect that was not necessary under the circumstances. the four levels of criteria in kirkpatrick’s model, namely reaction, learning, behaviour and results, were regarded as a valid starting point. thus, the model enabled the focus to move from assessment of training to assessment of results achieved and the relevance the training had to individual workplaces. research method data used for this article are based on a larger study conducted. the study was interpretive and used mixed methods within a case study design. this approach was selected because of the extensive nature of the research. the researchers were encouraged by christ (2018), who suggests that a mixed methods approach is feasible in research concerning special education or education of people with disabilities. qualitative data were collected through reviewing literature, conducting document reviews, as well as semistructured interviews with information-rich groups of participants. quantitative data were collected through analysis of attendance registers of registered students and kirkpatrick level 1 student satisfaction feedback forms. the problem of devising an appropriate research method was complex, as it involved the training department, students, alumni and employers. a case study using a mixed methods approach was selected to investigate how students could be trained and helped to find and keep employment in disability-sensitised work environments (corrigan & onwuegbuzie 2020). the research paradigm was interpretive, and purposeful sampling allowed for information-rich participants (rout 2019). there were elements of action research in the investigation; that is, after an investigation of needs, certain actions are planned and implemented in cycles to determine success. cycles consist of action (or involvement), evaluation of and reflection on results, repeated cycles in which some elements are changed, results are assessed, some more changes are made and the process is repeated. however, the method used in this research did not repeat similar processes. christ (2018) claims that mixed methods research and action research are comparable because both can use qualitative as well as quantitative data in one study. the research took place in five phases. the first phase was qualitative and included a review of documents and a literature review, in addition to semistructured interviews. six small groups participated, namely students studying on-campus, students studying off-campus but enrolled at the institution, alumni who had been part of previous work placement initiatives, facilitators, support staff and employers of alumni. the two streams of literature review provided information and underpinned the mixed methods used in the research. the questions asked in semistructured interviews stemmed from the literature study, while the document review of various government acts, regulations and codes of best practice, minutes of meetings and other official documents, led to the framework used to analyse the training models. both types of literature study indicated the need to include the views of students; thus, in the second phase, two quantitative methods were applied, namely a student satisfaction questionnaire and the analysis of student attendance (corrigan & onwuegbuzie 2020). as no suitable assessment instrument was available, it was necessary to develop one that was fit for purpose. an assessment instrument or model, namely the adaptable component-based assessment model (aca model), was developed by the researchers to provide consistent analyses of training models at the institution. as the name suggests, it is adaptable so that it can be used in other training environments. this article reports on the aca model that was developed. first phase of research each component of the aca model has students as its focus. the relevance to job creation, student satisfaction and class attendance are important because they indicate how future-focused the programme is and also whether students feel they are benefitting from the educational opportunity (dennis et al. 2016). the rest of the components indicate the institution’s responsibilities to ensure the success of the programme. the aca model is structured in the form of a matrix with four vertical and eight horizontal axes. the content of each of the intersecting blocks is selected so that individual elements can be assessed. the list of model descriptors is comprehensive but not prescriptive, and components that meet the needs of an individual institution can be added. the core components are identified according to the programme and the environment in which it is offered. the selection of the components must be considered with care to ensure that only those that are essential are selected, and they must be used consistently during an analysis. examples of core components are meta-competencies, cognitive abilities and methodological knowledge, functional and technical competencies, personal competence, values and ethics competence, individual affordances and workplace affordances, holistic development, the context of the workplace and reflective learning. the competencies reflected in the model enable an assessor to evaluate a programme from the point of view of a training organisation, students and prospective employers. meta-competencies are seen as relevant, overarching competencies like adapting, anticipating, learning and creating changes that generate flexibility in various work environments (heery & noon 2017). cognitive competencies include the ability to apply knowledge and skills in real-life situations, and methodological knowledge refers to theoretical knowledge of learnt skills and their methods. functional competencies are often technical or operational in nature and reflect the competencies required to perform a task effectively (garwe 2020). on the other hand, essential skills for building respectful, diverse and inclusive workplaces where employers hold themselves and their employees accountable for their actions are more personal than organisational. personal competence refers to emotional intelligence and the ability individuals have to manage their lives and emotions. social competence is behavioural in nature and refers to self-regulation, positive self-identity and social adaptation, while values and ethics competency means that personal and organisational practices are performed with integrity and respect (vornholt et al. 2018). the individual affordances included in the model are those that regulate human behaviour and are formed between an individual and an environment. holistic development includes physical, social, emotional, mind and spiritual learning and growth. workplace affordances focus on whether and how employers provide opportunities for learning. it is important to incorporate the context of the workplace because it includes awareness, acceptance, respect and understanding in an environment where everyone is valued for their unique skills, experiences and perspectives (vornholt et al. 2018). reflective learning is an intentional process in which students make meaning of the learning experience and think about what they have learned (brockbank et al. 2017). this helps them to develop critical and creative thinking skills and encourage active engagement in learning (brockbank et al. 2017). as can be seen from above, the core competencies evaluate the learning experience from a 360° perspective. table 1 provides the basic components of the aca model as a matrix. these components are not obligatory, as only those that are applicable need to be included in an assessment. table 1: basic components of the adaptable component-based assessment model. adaptability of the adaptable component-based assessment model the adaptability of the aca model allows an organisation to select the most appropriate model descriptors, core components, core competencies and success indicators once it has defined their own scope of work as well as the aims and objectives of the programme. the model descriptors should be as extensive as possible and must include the aspects that will allow the organisation to reach the goals of the programme when implementing its envisioned strategies. the core components focus on ‘unpacking’ the model descriptors to describe the most essential elements. in the research reported here, the mode of training delivery was identified as the most crucial core component, as it deals directly with the training and workplace preparation of students for the rapidly changing world of work (keengwe & byamukama 2019). mode of operation, mode of funding and identified risks and mitigating actions were also regarded as core components. the competencies expected of students when they have completed a programme flow from the model descriptors and core components. as the programmes offered by the organisation where the research was conducted focused on work-related practice, the evaluation instrument included meta-competencies, cognitive abilities and methodological knowledge, functional, technical and personal competencies, values and ethics, individual and workplace affordances, as well as development and reflective learning to analyse the mode of delivery. success indicators that were selected in the research have not been included here, but suffice it to say that assessing success in any programme must reflect the aims and objectives identified at the beginning of the assessment process. as each element is assessed, it is inevitable that more elements will be added. thus, the assessment matrix can become flexible and even elastic. in this way, it is made fit for purpose for individual organisations. in the present research, the aca model was first applied to the original training model of the organisation. as a result of the assessment, certain changes were made and applied in programmes the following semester. the adapted programme was then assessed using the same elements to ensure consistency and to assess which of the adaptations were successful and which were not. the two assessments are presented in table 2. as this is an example, only the expanded elements of mode of training delivery are shown. it is evident from the matrix that once the elements are decided upon, the actual assessment is fairly uncomplicated. as in the example below, if the same elements are used to assess an adapted programme, successes and failures become clear. table 2: application of adaptable component-based assessment model. conclusion training programmes for persons with disabilities should be future focused and provide choices at different national qualifications framework (nqf) levels so that appropriate career choices can be made available. various training models can be used to train students with disabilities, but they must be integrated, holistic and student centred. in order to achieve and maintain these standards, programmes need to be evaluated at the outset and at regular intervals. thus, an adaptable, structured assessment tool, namely the aca model, has potential to facilitate such programme evaluations. the aca training assessment model includes predetermined project aims and objectives, resources, roles and responsibilities of role players, as well as a cycle of programme assessments and adaptations. it enables ongoing evaluation of individual programmes, as well as complete courses. using the aca assessment model can potentially add value to the development of all programmes. acknowledgements the authors wish to thank the national institute for the deaf for allowing the analysis of their training programmes and da vinci institute for technology management for the opportunity to conduct the research as part of a doctoral program. competing interests the authors have declared that no competing interest exists. authors’ contributions the main author, j.c.j.v.r.-w., conducted the research as part of a phd qualification and wrote the article. j.e.m. was the supervisor of the research, helped to find resources and reviewed, edited and revised the manuscript. j.c.j.v.r-w. and j.e.m. were involved in conceptualising this article that has emanated from the research. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific funding grant from any public, commercial or nonprofit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references alsalamah, a. & callinan, c., 2021, ‘adaptation of kirkpatrick’s four-level model of training criteria to evaluate training programmes for head teachers’, education sciences 11, 116. 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preprocessing’, international conference on global technology initiatives 7(1), a29–a43. unesco, 2020, innovating technical and vocational education and training – a framework for institutions, unesco, paris. vornholt, k., villottib, p., muschalla, b., bauerd, j., colellae, a., zijlstra, f. et al., 2018, ‘disability and employment – overview and highlights’, european journal of work and organizational psychology 27(1), 40–55. https://doi.org/10.1080/1359432x.2017.1387536 western cape government, 2020, employ people with disabilities, viewed 01 july 2022, from https://www.westerncape.gov.za/general-publication/employ-people-disabilities. abstract introduction objectives research method and design analysis ethical considerations results the impact of pain the role of the healthcare provider the acceptance of pain discussion limitations conclusion acknowledgements references about the author(s) dawn ernstzen division physiotherapy, stellenbosch university, south africa quinette louw division physiotherapy, stellenbosch university, south africa susan hillier division physiotherapy, stellenbosch university, south africa international centre for allied health evidence, school of health sciences, university of south australia, australia citation ernstzen, d., louw, q.a. & hillier, s., 2016, ‘patient perspectives about the healthcare of chronic musculoskeletal pain: three patient cases’, african journal of disability 5(1), a216. http://dx.doi.org/10.4102/ajod.v5i1.216 original research patient perspectives about the healthcare of chronic musculoskeletal pain: three patient cases dawn ernstzen, quinette louw, susan hillier received: 17 aug. 2015; accepted: 07 oct. 2015; published: 18 may 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: consideration of the patient’s perspective in healthcare is important because it may inform holistic and contextually relevant management strategies. objectives: the purpose of this study was to explore patients’ experiences and perspectives about their chronic musculoskeletal (cmsk) pain and its management in the private healthcare sector in south africa. this work was done as a pilot study to test, adapt and finalize an interview schedule. methods: a descriptive, qualitative study was conducted. the sampling was purposive. three patients with cmsk pain were recruited to participate in in-depth individual interviews. the interviews were recorded and transcribed ensuring confidentiality. inductive, thematic content analyses of the transcripts were undertaken. initial codes were assigned and a code book developed, which was applied to the transcripts to develop categories and themes. results: four themes emerged from the data: (1) the participants sought understanding about the pain’s origin and the reason for pain persistence; (2) pain impacted their lives in multiple ways; (3) the participants depended on healthcare providers (hcp) for guidance and support; and (4) they had the option of acceptance of chronic pain. conclusion: the participants’ knowledge about their health condition had important implications as it influenced their perspectives on pain and its management. the pain presented the participants with several challenges, which included developing an understanding about pain and coping with the impact of pain in their lives. hcps were perceived to play an important role in empowering or disempowering the participants. introduction chronic musculoskeletal (cmsk) pain and its management present a challenge to patients, healthcare providers (hcps) and communities. the condition is classified as part of chronic non-malignant pain, which includes musculoskeletal, neuropathic visceral pain and pain from sickle cell disease (world health organization [who] 2007). cmsk pain comprises of pain associated with joints, muscles, tendons and nerves that persists for longer than 12 weeks, and thus beyond the expected healing time (blyth et al. 2001). it has been recognised as a global healthcare concern and affects many societies, including sub-saharan africa, where cmsk is a major cause of disability and morbidity (who 2003; furlan, reardon & weppler 2010; rauf et al. 2014). the condition has a significant impact on physical and psychological health and functions, participation in life roles, and thus ultimately on the quality of life of the individual (foster et al. 2003; furlan et al. 2010). foster et al. (2003:402) call for a patient-centred approach to the problem of cmsk pain, to ‘illuminate the long neglected patient’s perception of their problem and its management; and thus the dynamic interaction between the condition, the patient’s perception and the practitioner’s influence’. individuals with chronic pain often perceive their condition to be neglected (upshur, bacigalupe & luckmann 2010), therefore a patient-centred approach is essential. understanding the patient as a person and the individual experience of illness is a core aspect of a patient-centred approach (mead & bower 2000). kidd, bond & bell (2011) describe patient-centred healthcare as the patient being central within the consulting relationship, resulting in understanding from the patient’s perspective, which may ultimately influence healthcare utilisation (wagner et al. 2005). furthermore, understanding the patient’s perspectives may inform management strategies that are contextually relevant and acceptable to the patient, thus providing for a holistic and patient-centred management plan as a part of quality healthcare. several studies on patient perspectives about the healthcare management of chronic pain in well-established healthcare systems have been conducted internationally. the findings of these studies focus on patients’ understanding of their pain, their perspectives regarding treatment received, barriers and facilitators to care, patient–provider relationships and patient-centredness (allegrettia et al. 2010; kidd et al. 2011; potter, gordon & hamer 2003; upshur et al. 2010). little information is available on the process of coming to terms with chronic pain. skuladottir & halldorsdottir (2008) addressed this gap in the literature by developing a theory on women’s processes of making sense of chronic pain. in their theory, women are challenged to cope with pain, to live with pain and to find meaning in their suffering. according to this theory, hcps are seen as playing a powerful role assisting women in regaining control and sense in their lives. studies on patient perspectives regarding chronic pain care in africa are scarce. one study in south africa investigated the satisfaction of patients with a chronic pain management group (parker et al. 2009). the current study builds on the knowledge base on patient perspectives and experiences in the south african (sa) healthcare context. the sa healthcare context is characterised by a private as well as a public healthcare system (rowe & moodley 2013). this study focuses on private healthcare. this work is an essential start to identifying the contextual factors that might impact patient perspectives and healthcare delivery. objectives the objective of this study was to explore patients’ experiences and perspectives of their cmsk pain and its management in the private healthcare sector in south africa. this pilot study was done to test, adapt and finalise an interview schedule for a larger study on clinical guidelines for the management of cmsk pain. research method and design study design a descriptive, qualitative study was conducted, using an interpretive research paradigm, to study the lived experience of chronic pain. britten (2006) postulates that qualitative research investigations focus on individuals in their natural setting and are concerned with the participants’ perception of their world. in this study, semi-structured individual interviews were conducted to discover the participants’ experiences, understanding and framework regarding their cmsk pain and its management. study setting the study was conducted in the western cape, south africa, and involved patients who received healthcare in the private healthcare sector. sampling purposive (strategic) sampling in the form of criterion sampling was used (palys 2008). the key criteria linked to the study objectives included that the participants had to have chronic pain (constant pain for longer than three months) and the pain had to be musculoskeletal in origin. persons with chronic pain of non-musculoskeletal origin, for example, cancer pain, neuropathic pain and chronic pain from sickle cell anaemia, were not eligible to participate. this exclusion criterion was set as these types of chronic pain have different pathological processes, clinical symptoms and management processes, which could lead to different patient perspectives. male or female adults were eligible to participate. furthermore, eligible participants should have received healthcare for their condition in the sa private healthcare setting. starks & trinidad (2007) advise that a typical sample size for a phenomenological study should range from 1–10 participants to identify the core element of the phenomenon. for the purpose of this pilot study, three patients with cmsk pain were recruited from three healthcare practices (one patient per practice). instrumentation in-depth individual interviews were conducted, because of the possibly sensitive nature of the information. the principal investigator (pi) developed an interview schedule (box 1) based on similar research, and its content was evaluated by the co-researchers and by two external auditors who were familiar with the research objectives. the interview schedule was designed to elicit the participants’ narrative and perspectives regarding their pain and consequential healthcare management. box 1: main interview schedule. research procedures hcps, which assessed patients, were requested to identify eligible patients, inform them about the study and ask permission to refer them to the pi. the pi contacted the eligible patients and arranged to conduct the interviews in the participants’ home or work setting to allow for a natural milieu, as advocated by britten (2006). prior to the interview, the pi explained the purpose of the research. informed consent was obtained, and the participants completed a short questionnaire to provide their socio-demographic information. each interview lasted approximately 30 min – 40 min. the interviews were conducted in afrikaans, which was the home language of the participants. interviews were recorded on a digital voice recorder, then downloaded to the pi’s personal computer and allocated a unique serial number. the positionality of the researcher forms an integral part of the research process. the personal characteristics of the interviewer (age, occupation, gender) can influence the data collection and analysis (karnieli–miller, strier & pessach 2009). the pi was a female physiotherapist who did not have chronic pain but has been involved in the healthcare of patients with cmsk pain. the participants knew that the researcher was a physiotherapist, and this aspect could have influenced the participants’ responses about hcps. the researcher has worked in private and public healthcare settings, including at the primary and tertiary healthcare levels, and has experience in the academic setting. this background could have influenced her interpretation of the data. the participants as well as the researcher were female, and this aspect could have eased communication, resulting in openness and approachability. the researcher has experience in qualitative research and has undergone training in qualitative methods, including interviewing, to prepare for the data collection and analysis. analysis the interviews were transcribed verbatim by the pi. inductive, thematic content analysis of the interview transcripts were done, as described in pope, ziebland and mays (2006). data analysis involved an iterative process of immersion in the data, familiarising oneself with the data, highlighting significant statements (quotes), creating a code book, coding the data, developing clusters of meaning (categories), establishing themes and, finally, interpretation and validation of the data. the pi independently assigned initial codes, then revisited the data to check accuracy as part of validity checking. the initial analysis was done using the afrikaans texts. the quotes were translated by the pi to enable external auditing. the two external auditors, who were familiar with the research objectives and the interview schedule, evaluated the data coding of two transcripts as part of validation. the external auditors provided comments on the accuracy of the categories assigned to the quotes and the themes that arose from the categories. the co-researchers approved the final themes. a summary of the findings was communicated to the participants to aid validation. ethical considerations the study protocol was approved by the health research ethics committee of stellenbosch university, south africa (s14/01/018). informed consent was obtained from participants. participation was voluntary, and the participant could withdraw from the study at any point. the participants’ personal information was kept confidential. it is acknowledged that qualitative research involves power relations (karnieli–miller et al. 2009). the researcher and the participant are involved in the process of power sharing, which entails continuous establishing of boundaries and negotiation of power. the researcher thus requested the participants’ consent to participate in the interview. the interviews were done in the participants’ natural setting (home or work), which was an unfamiliar setting for the researcher. at the start of the interview, the researcher built rapport by creating an atmosphere of trust, emphasising that the researcher wanted to learn from the participant by listening to the participant’s story. the researcher thus acknowledged the participant’s contribution. results description of participants three female patients with cmsk pain participated in the study. all three were married and had two or three adult children. pseudonyms will be used to discuss the participants’ responses. anne and sarah had obtained a tertiary education and were working full-time in management positions. delia had previously worked as a manager in retail but was unemployed at the time of the interview. anne had chronic bilateral posterior lower limb pain for 15 months with no specific precipitating event. she rated her average pain as 6/10 on the visual analogue scale (vas). sarah had chronic widespread pain, which started about two years earlier without any precipitating event. she rated her average pain as 4/10 on the vas. delia had chronic low back pain and leg pain for 15 months, after she sustained an injury at work. she had a lumbar fusion one year after the incident. she rated her average pain as 7–8/10 on the vas. main findings four major themes emerged from the data, the (1) search for understanding, (2) impact of pain, (3) role of the healthcare provider, and (4) acceptance of pain. below, the data are described in their context according to each theme, followed by substantiating quotes. all quotes have been translated from afrikaans to english by the pi for the purpose of this article. the search for understanding although the pain features of anne, sarah and delia were different, their narratives were strongly focussed on their pursuit of understanding the origin of the pain and the reason for its persistence. understanding pain was important to them to make sense of the pain and to complete their pain puzzle. ‘it is not as if i am fabricating [sic] the pain. … i live with it everyday. the pain can’t come from out of nowhere; it has to originate somewhere’. (anne) ‘you are uncertain … and you keep searching, and you start wondering’. (sarah) delia’s narrative focussed less on the search for the source of the pain and more on the reasons for its persistence. she started blaming herself for the persistent pain: ‘i think it is because i am an impatient person. i don’t give this thing time to heal. i must stick to the rules’. (delia) anne consulted several hcps in her search for the source of her pain. this process left her feeling despondent: ‘no one really has an answer. you go back to that person, but he cannot find anything faulty in the area that he tests. next time you go to a different person. later, you ask yourself: what is wrong with me?’ (anne) the above quote also represents the participants’ experience of a lack of communication and collaboration between hcps, which hindered continuity of care and the understanding of her condition. these perspectives about the lack of collaboration between hcps were authenticated when analysing the care pathway that the participants followed. the participants were referred to and consulted several hcps through an inconsistent healthcare pathway. this disconnected care pathway further strengthened sarah’s fears and uncertainty about the origin of her pain: ‘they send you around, and later they also don’t know where-to next. the medication is not effective. what should you do next? what do you do now?’ (sarah). in seeking for understanding, anne and delia also consulted the internet for information on their condition. the impact of pain emotional impact fear, worry and uncertainty about the pain, its origin, and its effects on their lives were expressed as dominant emotions during the process of finding answers for the pain. the pain affected their very being, which was reflected in the following statements: ‘and then the uncertainty … maybe it [the pain] is going to persist. … is this your future or what?’ (sarah) ‘in my head, i wondered if it is cancer or something and nobody picks it up’. (anne) ‘now i am very worried – what went wrong? i really cannot face another operation. i told my husband, this pain is driving me crazy, from one day to the other …’ (delia) delia kept a diary in which she recorded the behaviour of her pain, which emphasises her vigilance about finding a pain pattern: ‘you need to monitor yourself – make notes of what you do, and then you can find out: what did i do yesterday that makes me feel this way today?’ (delia) functional impact pain interfered with the participants’ functional abilities, including self-care, work and limited participation in leisure activities. the unpredictability of the occurrence of pain was a particular concern for sarah: ‘there were times i decided to go for a slow stroll, but then everything got worse. and you can’t go on. i used to like going for hikes on the mountain; now i can’t do what i used to do, i can’t do easy walks’. (sarah) ‘i could not sit, i could not work. i walked with great difficulty. it just got worse’. (sarah) ‘the thing that restricts me the most is that i can’t be active as a result of the pain. i can’t be myself’. (anne) ‘i cannot be disabled? i walk from the car to the entrance of the mall, and then i am tired. not only tired, but also sore on top of it. you know, the pain restricts me a lot. i can’t use public transport’. (delia) ‘now the pain is not there, and then suddenly, tomorrow or the day after, the pain is back!’ (delia) delia also lost her job after the incident; however, she chooses to focus on the positive aspects: ‘and my employer decided that they do not need my services any more. i was unfortunate to be dismissed from work, but i am fortunate that i can be at home. i am not going to stress about work. we work together as a family’. (delia) impact on family the participants were thankful about the support they received from their family. however, only delia commented on the impact of her suffering on her family: ‘the drama that i put my family through! … yes, they are my support system; my husband is wonderful’. (delia) the role of the healthcare provider the search for understanding pain, as well as the immense impact of pain, left the participants vulnerable. each participant acknowledged that she turned to hcps for guidance, care and support. anne appreciated the support she received from her hcp: ‘my doctor went through a lot of trouble for me, to go through all the elements and to eliminate that which is not causing the pain. she phoned the specialist and got the information for me’. (anne) however, sarah was referred to a specialist and had to wait three months. she felt that more could have been done to support her during this time of uncertainty. ‘what would have been good for me is not only to refer me to the specialist, and not be worried that i can only get an appointment in three months’ time, but rather to help me to decide what i should do in the meantime, while i have to wait …’ (sarah) sarah later identified the characteristics of an hcp who supported her: ‘and it is good for me. you feel you can talk to him. he does not let you feel that you are asking stupid questions. it is important, because you are unsure. the way he approaches it, is good and important’. (sarah) delia also mentioned aspects that she valued during her journey: ‘they were good; although they did not really understand the pain, they were sympathetic. they showed empathy, and they listened’. (delia) the participants valued a collaborative relationship between the patient and the hcp and expressed a desire to be part of the solution. the collaborative relationship was described as open communication between the patient and the hcp and approachability of the hcp. ‘what is good about dr x is that he consults me and provides me with thorough information about decisions’. (sarah) the participants mentioned several attributes of the hcp that fostered patient-centred care and positively influenced the participants’ coping mechanisms. these attributes included approachability, good communication skills, a caring nature, genuineness, trustworthiness and guidance. however, some features of hcps frustrated the participants, and this formed a barrier to care. particular instances mentioned by the participants included a lack of understanding of the pain, the hcp’s not believing that the patient’s pain was real, and statements that the pain was in the patient’s head: ‘nobody understands your pain, hey. they would not know what you are talking about’. (delia) ‘they told me that i must get my head right, that i must manage the pain in my head, but the pain is not in my head! they must try and understand that the pain is not in your head. it is not the origin of the pain. stop saying to the patients to get your head right – it is very frustrating to hear that’. (delia) the acceptance of pain sarah started a process of accepting pain as a constant companion in her life when her condition was diagnosed, and she thus found a credible explanation for the pain’s persistence. once she received this explanation, she felt as if her life could continue: ‘also, the fact that you can now put a name to the condition … you are not fabricating the pain’. (sarah) ‘i had to adapt and realize there are certain things that i cannot do. the fact that i walk in the mountains again is good for me. and yes, i accepted long ago that i cannot do now what i did earlier. that is it. other people struggle with worse things. you learn to manage it’. (sarah) however, anne, at the time of the interview, had not yet found a credible explanation for her persistent pain. she remained actively seeking an answer for the pain, and her quest to complete the puzzle of her pain continues: ‘i feel satisfied with all the tests done, but i am dissatisfied that i still don’t have an answer. i can’t pinpoint it [the pain’s origin]’. (anne) delia also remains hopeful for an improvement: ‘but it will never go completely away, but he said the pain would get about 80% better, and that is what i would want. it is never going to be the same again’. (delia) discussion the primary aim of this study was to discover patients’ experiences and perspectives regarding the healthcare management of their cmsk pain. the findings indicate that the participants were faced with several challenges, as identified in their narratives about their pain. the first challenge was seeking to understand the origin of the pain, as well as the reasons for its persistence. the pain left the participants vulnerable and dependent on the guidance and support from hcps. the next challenge was the participants having to come to terms with the immense impact of chronic pain on their lives. and finally, there was the challenge of accepting pain as a part of their lives. the participants reported the dominant emotions of fear, anxiety and worry accompanying their realisation of the significant impact of pain in their lives. under these circumstances, the participants relied not only on family support but also on support and guidance from hcps. it could be deduced that there is a strong impetus for hcps to address patients’ concerns about their pain. the participants were actively seeking information and reassurance about their condition. hayes & hodson (2011) advocate early educational interventions for people in pain, to assist patients in making informed choices about the pain and limit its effects. the notion relates to education as therapy. one such educational approach, namely pain neurophysiology education (pne), was found to be beneficial to aiding the patient’s understanding of cmsk pain (clarke, ryan & martin 2011; louw et al. 2011). pne focusses on explaining the biology of nociception and the reasons for pain becoming persistent, to enable patients to re-conceptualise their pain experience. when patients understand their pain experience, it might alleviate their worries about the pain and in return decrease the disability associated with chronic pain. the findings indicate that hcps may play a central role in the patient’s journey towards understanding and acceptance of pain. this is congruent with the theory of skuladottir & halldorsdottir (2008) that hcps play a powerful role in empowering or disempowering the patient. the participants identified several elements that were important to them in the healthcare management process and can be seen as empowering. these elements include a collaborative relationship between the patient and the hcp, where communication, approachability, empathy and trust are central. this collaboration is necessary to achieve shared decision making, empowerment and a therapeutic alliance between the patient and the hcp. upshur et al. (2010) contend that the attributes of the hcp play an important role in forming a therapeutic alliance, to enhance the patient–provider relationship, and contribute to patient satisfaction with chronic pain care. however, disempowering elements were also noted, such as hcps not believing or understanding the participants’ pain experience. egeli et al. (2008) also noted that patients with chronic pain could be disempowered by hcps. one participant was particularly disempowered by comments that the pain was in her head, whereas the patient was convinced that the pain was in her back. this may be an example of the negative effect that inadequate communication has on the patient–practitioner relationship. it is thus important that hcps be attentive to any form of miscommunication between them and their patients, which could be detrimental to patients’ coping ability. the participants identified two healthcare system factors that acted as barriers to optimal pain care, namely the lack of communication and collaboration between different hcps, which in turn led to the second system factor, a disconnected care pathway in private practice. the participants became discouraged as they were depending on guidance from the hcp but often had to make their own decisions about their pathway of care. these system factors could be addressed by interdisciplinary care through a team approach. hayes & hodson (2011) also identified a lack of collaborative practice in pain care in a healthcare setting in australia, and they reported on several changes they made to develop a systems approach for chronic pain care. hayes and hodson (2011) and wagner et al. (2005) advocate a systems approach that focusses on patient-centred and interdisciplinary care as necessary to address chronic pain. there are different factors that may play a role in establishing such a patient-centred and interdisciplinary system in the sa private healthcare sector. they include interdisciplinary versus solo practices, information technology options to improve communication, cost, patient advocates and patient preferences. a thorough analysis of the barriers and facilitators is needed to determine how different factors would enable interdisciplinary care. the sa healthcare system is currently a system in transition (rowe & moodley 2013). the introduction of the national health insurance could play an important role in establishing a systems approach that emphasises interdisciplinary collaboration. the participants in this study went beyond a narrative of their pain to introduce the concept of acceptance of pain. their willingness to accept pain was related to their understanding of the basis of their pain, whilst their coping strategies were positively influenced by empowerment by hcps. acceptance of chronic pain has been defined as living with pain without attempts to reduce or avoid it; engaging in functions and daily activity regardless of the pain and the willingness to continue with enjoyable activities despite having pain (mccracken & eccleston 2003). acceptance of pain thus requires an active approach. preliminary evidence from descriptive studies indicates that acceptance-based rehabilitation may lead to positive results in pain, disability, depression, anxiety and quality of life (mccracken & eccleston 2003; mccracken, vowles & eccleston 2005). this study, albeit small and non-generalisable, raises several thoughts and questions that could be further investigated. these include the several challenges that patients face in their personal journey of realisation to acceptance of cmsk pain. the study expands on patient expectations about healthcare management of cmsk pain and emphasises the powerful role of the hcp as a source of support and guidance. the participants had definite and strong expectations about their healthcare management, which is congruent with the notion of patient-centeredness as described by mead & bower (2000). the findings strengthen the need for interdisciplinary collaboration to effectively address chronic pain. as a result of this pilot study, we adapted our interview schedule to include more specific probing questions regarding contextual factors as well as coping strategies, specifically relating to question 3 and question 5 (box 1). in our search for uniquely contextual elements in the sa context, only two aspects could be identified. the first is the participants’ experience of a lack of collaboration between different hcps in private practice. the second contextual factor concerns contextualisation of educational interventions to ensure that it is appropriate en relevant to the patient and to optimise communication between the patient and the hcp. limitations there are several limitations that need to be taken into account when interpreting the results of this pilot study. the sample size is small, and the lived experiences of three female participants with cmsk pain are investigated in this study. the findings of the study cannot be generalised as a more diverse sample might provide a broader range of perspectives. as a next step in the research process, more patients in different healthcare contexts need to be interviewed to obtain theoretical data saturation. furthermore, it is acknowledged that the personal characteristics of the interviewer (age, occupation, gender) might have influenced interviewee responses. the researcher is a physiotherapist and thus could have influenced the participant responses toward hcps. however, the open responses and feedback provided by the participants suggest that this was not a barrier to them sharing their experiences. the interviews and initial analysis were done in afrikaans and later translated to english by the pi. this translation might have impacted the richness of the quotations. conclusion the narratives of the three participants with cmsk pain indicate that their journey with chronic pain presented several challenges. the participants were actively seeking an understanding about the source of pain and the reason for its persistence in order to make sense of the pain. a disconnected healthcare pathway was barrier to understanding pain. hcps played an important role in empowering or disempowering the participants in their journey with chronic pain. addressing the above factors may enhance the quality of care for patients with cmsk pain. acknowledgements this work is based on research supported in part by the national research foundation of south africa through grant 85086. any opinions, findings and conclusions or recommendations expressed in this material are those of the authors, and the national research foundation does not accept any liability in this regard. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all the authors contributed to the conception and design of the study and interpretation of data. d.e. drafted the manuscript. d.e., q.l. and s.h. provided critical revision and approval of the manuscript version to be published. references allegrettia, a., borkana, j., reisa, s. & griffiths, f., 2010, ‘paired interviews of shared experiences around chronic low back pain: classic mismatch between patients and their doctors’, family practice 27, 676–683. blyth, f.m., march, l.m., brnabic, a.j., jorm, l.r., williamson, m. & cousins, m.j., 2001, ‘chronic pain in australia: a prevalence study’, pain 89, 127–134. britten, n., 2006, ‘qualitative interviews’, in c. pope & n. mays (eds.), qualitative research in health care, 3rd edn., 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anything to do with you”: patient views of primary care management of chronic pain’, pain medicine 11, 1791–1798. wagner, e.h., bennet, s.m., austin, b.t., greene, s.m., schaefer, j.k. & vonkorf, m., 2005, ‘finding common ground: patient-centeredness and evidence-based chronic illness care’, the journal of alternative and complementary medicine 11(1), s7–s15. world health organisation (who) scientific group on the burden of musculoskeletal conditions of the start of the new millennium, 2003, the burden of musculoskeletal conditions at the start of the new millennium. world health organization technical report series, geneva, 919:i-x,1–218. world health organisation (who) (2007) normative guidelines on pain management: report of a delphi study to determine the need for guidelines and to identify the number and topics of guidelines that should be developed by who. geneva report prepared by prof neeta kumar, who geneva. article information author: wisdom k. mprah1 affiliation: 1department of disability and human development, university of illinois at chicago, united states of america correspondence to: wisdom mprah postal address: po box 27, mampong-akwapim, ghana dates: received: 12 jan. 2013 accepted: 08 july 2013 published: 06 sept. 2013 how to cite this article: mprah, w.k., 2013, ‘sexual and reproductive health needs assessment with deaf people in ghana: methodological challenges and ethical concerns’, african journal of disability 2(1), art. #55, 7 pages. http://dx.doi.org/10.4102/ ajod.v2i1.55 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. sexual and reproductive health needs assessment with deaf people in ghana: methodological challenges and ethical concerns in this original research... open access • abstract • introduction    • sexual and reproductive health and deaf people    • being deaf • methods of data collection and analysis    • study design    • population and sample    • sampling strategy    • criteria for exclusion • data collection and analysis    • focus groups    • survey    • findings • methodological issues    • transcribing focus group    • conducting surveys    • comparing research findings • ethical consideration    • obtaining informed consent    • confidentiality and anonymity of focus group participants • conclusion • acknowledgements    • competing interests • references abstract top ↑ background: deafness is a complex and multifaceted phenomenon. the different ways of perceiving and understanding deafness have practical implications for research with deaf people. whilst the deaf community is not homogenous, it is generally distinct from the hearing population. consequently, the appropriateness of applying research methods and informed concern processes designed for the hearing population in research with deaf people has been questioned. objectives: this article reflected on some methodological challenges and ethical concerns arising from conducting a sexual and reproductive health needs assessment with deaf people in ghana. the aim was to provide some perspectives on some of the challenges associated with doing research with deaf people. method: the study was a two phase, sequential, mixed methods design, consisting of three focus groups to assist in the development of a survey and then the implementation of the survey for needs assessment data collection. the number of participants in the study was 179, consisting of 26 focus group participants: 7 executives of the ghana national association of the deaf (gnad), 10 male adults, and 9 female adults. there were 152 survey respondents (students, women and men) and one key informant. all participants, except the key informant, were deaf people. results: the application of traditional research methods to studies involving deaf participants presents numerous methodological and ethical dilemmas associated mainly with deaf people’s unique cultural and linguistic characteristics. conclusion: research methods should not be taken as universal guidelines for conducting research in all settings because of differences in settings. introduction top ↑ sexual and reproductive health and deaf people sexual and reproductive health (srh) problems remain the leading causes of ill health and death worldwide, especially amongst women of reproductive age. the situation is worse in developing countries where millions of women suffer from long-term disabilities and premature death as a result of child-birth and pregnancy-related complications (glasier et al. 2006). governments and other stakeholders are increasing their efforts to alleviate the consequences of poor srh for individuals, families and society at large. a major landmark in this endeavour was the unites nations sponsored conference on population and development in cairo in 1994, where a common course of action was taken to find solutions to the problem (united nations department of public information 1995). in ghana, the formulation of policies (e.g. the ghana population policy, the adolescents reproductive health policy and the national hiv/aids and sti policy), research to identify groups at high risk, poverty reduction, and increasing access to information are key government strategies to address srh problems (ghana statistical service, noguchi memorial institute for medical research & orc macro 2004; hessburg et al. 2007). however, people who are deaf and hard of hearing are unlikely to benefit from policies and programmes intended to address srh problems. negative perceptions about deafness and lack of societal understanding of their concerns have contributed to the neglect of deaf people in srh policies and service delivery (world health organization [who] 2009). for example, available data suggest that deaf people are more likely to face difficulties utilising common sources of information than their hearing counterparts (fedorowicz 2006; groce, yousafzai & maas 2007; heyederick 2006; roberts 2006; wilson & monaghan 2006). they encounter communication barriers in the healthcare system because healthcare providers typically cannot communicate with them (mottram 1999). in addition, healthcare providers often underestimate the difficulties of speech reading and overestimate deaf people’s ability to understand written notes (margellos-anast et al. 2005). the few studies conducted on deaf people in ghana indicated that they have limited access to mainstream information, and thus, have limited knowledge on srh issues (poku 2008; tsiboe-darko 2008). however, these studies do not provide comprehensive srh data directly relevant to the deaf community. the purpose of this study therefore was to complement knowledge generated by these studies to provide a better explanation of the srh needs of the deaf population in ghana. being deaf generally, deaf people are distinguished from the hearing population not only by their hearing loss, but by having distinct cultural and linguistic characteristics, which include a communication system that is different from the spoken language, as well as cultural values that are different from those found amongst hearing people (sparrow 2005; tucker 1998). in addition, whereas individualism is generally a dominant cultural feature in the hearing population (with some exception), collectivism is dominant amongst deaf people, and members of the deaf community often consider themselves as a close-knit and interconnected group (ladd 2003). in some western countries such as the usa, there are two main deaf cultural identities or perspectives: the medical, represented by a lowercase ‘d’, and the cultural or ethnic minority model, represented by a capitalised ‘d’. the distinction between d/deaf formulation points to different perspectives of deaf individuals who are considered clinically deaf and those who are members of a linguistic-cultural group (burch 2004; padden & humphries 2005). deafness is perceived primarily in terms of the underlying medical pathology (corker 1998; tucker 1998). on the other hand, deaf people who subscribe to the cultural identity construction do not consider themselves as persons with disabilities and perceive deafness as a cultural phenomenon rather than a disability (padden & humphries 2005; tucker 1998). the inability to hear, according to the cultural model, is essentially parallel to a hearing person’s ignorance of the sign language of the deaf community: a social disadvantage rather than a physical disability (crouch 1997; tucker 1998). it should be noted that the distinction between ‘deaf’ and ‘deaf’ identities is not so easy as it is a matter of perspective – there are deaf people who do not consider themselves part of deaf culture and hearing people who do. thus deafness is not a singular, monolithic entity; neither is it merely d/deaf binary identities (leigh 2009; young & hunt 2011). there are more substantial differences within the d/deaf community than just the d/deaf identities; for example, there are deaf people with varying degrees of hearing losses, fluency in sign language, literacy and level of integration in the community, all of whom have different life experiences and relate differently to their deafness (leigh 2009; young & hunt 2011). however, even though there are several ways of being deaf and several distinct deaf communities around the world, deaf people have many values in common, and these values are different from those of the hearing population. these differences have caused some people to question the appropriateness of applying traditional data collection methods, usually designed for the hearing population, in research with deaf people. some researchers have suggested that research with deaf people should be considered cross-cultural. for example, pollard (1992) argued that if it is acknowledged that there is the existence of a distinct deaf community and culture, which sometimes becomes the focus of research, then framing some research with deaf people as cross-cultural is appropriate. this article is based on a srh needs assessment with d/deaf people in ghana. the article discusses some of the critical issues and challenges involved in applying traditional research data collection methods and ethical principles in research involving deaf subjects. the intent is to provide insights into the possible challenges researchers working with d/deaf subjects are likely to encounter if they ignore variability in the deaf community and presuppose a singular deaf identity. for the sake of convenience, the lowercase ‘deaf’ is used in this write-up. methods of data collection and analysis top ↑ study design the study was a participatory srh needs assessment targeting only deaf people who were fluent in ghanaian sign language (gsl) in ghana. the study utilised a two-phase, sequential, mixed-methods design, consisting of three focus groups to assist in the development of a survey and then the implementation of the survey for needs assessment data collection. the focus groups allowed an in-depth exploration of themes to identify srh issues that were important for the development of the quantitative (survey) instrument. the survey phase was conducted to document needs related to these themes within the deaf community.mixed methods research involves integrating two data collection techniques from two divergent research traditions in a single study. this approach presented opportunities for tapping the strengths of two methods, whilst at the same time compensating for their weaknesses. the qualitative component provides detailed perspectives or descriptions of processes, thus ensuring a better understanding of the phenomenon of interest, whilst the quantitative component highlights the potential causal mechanisms associated with a given outcome (creswell & plano clark 2007; curry, nembhard & bradle 2009). also, a mixed methods approach facilitates triangulation of data collected on the same issue, which often helps researchers develop a deeper understanding of the issue being investigated (creswell & plano clark 2007). triangulation allows the researcher to complement the differing strengths of quantitative and qualitative methods (creswell & plano clark 2007). mixed methods research is therefore appropriate for investigating complex social problems that involve the needs of deprived communities. issues concerning such communities are very complex and require research approaches that can contextualise and provide a comprehensive explanation of these issues. data from multiple sources can help to provide a fuller understanding and to better interpret the results than relying on data from only one source. the complexity of srh issues in ghana presents similarly complex data collection and interpretation challenges, and thus makes mixed methods appropriate for this study. population and sample a total of 179 participants were recruited for the study, 26 of whom were focus group participants, 152 were survey respondents, and one person served as a key informant. all participants, except the key informant, were members of the deaf community and were considered well informed about issues in the community. sample size was a function of the available resources, time constraints and the difficulty of locating deaf people. the latter factor was an important limitation since deaf people do not form a homogenous population and do not normally reside in clustered localities. in addition, recruitment was limited to those with formal education who were fluent in gsl. participants were recruited from two communities in ghana, namely tamale, a city in the northern zone, and accra, in the southern zone of ghana. the intent in selecting these communities was to sample respondents with diverse characteristics so that views from people with different perspectives on the topic could be represented. tamale and accra represent the northern and southern sectors of the country, which reflect important differences in culture and socio-economic development. the northern sector is generally poor and characterised by poorly developed infrastructure and harsh climatic conditions as compared with the southern sector (berry 1995; national population council 2000). specific locations where participants were recruited from the two cities were a senior high school for the deaf, churches for the deaf and a centre for the deaf. efforts were made to ensure that women were equally represented since young girls have been found to be more at risk for srh problems than boys (national population council 2000). of the students recruited from the senior high school, 44 were female, although female students constituted only 93 of the 343 student population. in the study, respondents from accra and tamale (aged 22 years and above) are referred to as the ‘adult population’ and those from the senior high school for the deaf (aged 18–22 years) as ‘students’ or ‘adolescents’. sampling strategy the sampling procedure used for selecting participants for this study was purposive, targeting only persons considered knowledgeable of issues affecting the deaf community. members were selected based on their knowledge of issues that affect the deaf community; they were considered opinion leaders in the deaf community. those selected include current executives of gnad, past executives of gnad, and people serving on committees in churches for the deaf. whilst focus group participants were recruited from two churches for the deaf and a centre for the deaf in accra, recruitment of survey respondents was conducted in a high school for the deaf and three churches for the deaf. these locations were selected in order to increase the likelihood of identifying deaf people who had formal education and knowledge of gsl. recruitment was done through announcements that included information about the study and eligibility requirements. informed consent was obtained from all participants before recruitment. with the focus groups, prospective participants were contacted through text messages and emails. written scripts of the recruitment announcements were developed in english and signed in gsl at introductory meetings. after contacting prospective participants, arrangements were made to meet the men and the women at two different locations to discuss the focus group procedures, their remuneration, and issues concerning their privacy and confidentiality. ten out of the 12 men contacted agreed to participate, whilst 9 out of the 15 women contacted agreed to participate. seven of the 10 gnad executives agreed to participate. the key informant was recruited from one of the srh centres. recruitment of survey respondents was conducted through announcements that included information about the study, eligibility requirements, and an invitation to volunteers to undergo screening and the informed consent process at predetermined dates and times. on the screening day, those who qualified to participate were asked to sign the informed consent forms. in the high school for the deaf, verbal permission was sought from the head of the school before recruitment began, and a notice was sent to teachers and students about the study. based on advice from gnad, one key informant was interviewed to seek his views on his experiences working with deaf people. he also helped to clarify information gathered from the focus groups and survey. the key informant had done a study on hiv and aids with the deaf community so he was familiar with that community. criteria for exclusion participants comprised people who were deaf or hard of hearing, fluent in gsl, resident in ghana and aged between 18 and 61 years. lack of formal education was an exclusion criterion since formal education is required to use gsl. communicating with this non-gsl group would have required learning the local language such persons developed to communicate within their communities – a serious logistical challenge since ghana is a multilingual society. users of gsl were more likely to have utilised or had attempted to utilise srh information from education programmes that disseminated material through magazines, posters, online material and brochures. this category of deaf people were more likely to have better understanding and experiences to explain the challenges deaf people face when accessing srh information and services. data collection and analysis top ↑ focus groups three focus groups were conducted, (1) the executive group consisting of 7 executive members of gnad, all of whom were men, (2) the adult male group with 10 members and (3) the adult female group with 9 members. the focus group guide consisted of open-ended questions and elicited information on participants’ views concerning access to srh services and information. issues discussed were: • sources of information • knowledge of srh problems in the deaf community • srh experiences and needs of deaf people • ways to correct problems deaf people encounter when accessing information and services relating to srh issues • key related issues in the deaf community • the role of gnad in the provision of information and services relating to srh issues. video tapes and audio recorders were used with participants’ permission to record proceedings in the focus group sessions. whilst the men’s and the executives’ focus group sessions were conducted by a male research assistant, the women’s focus group session was conducted by a female research assistant. the researcher helped the assistants when probes were needed for clarification or when the discussions went off-topic. the men’s focus group session was the first to be conducted, followed by the women’s and then the executives’ sessions. both the men’s and women’s focus group sessions were conducted on church premises whilst the executives’ was held at the gnad head office. the researcher and the research assistants were all native signers, so all focus group sessions were conducted in gsl. being native signers and members of the deaf community in ghana facilitated the establishment of rapport with the participants and created a comfortable environment to discuss issues relating to a sensitive topic in ghana. in addition, resolving issues relating to the video recording of focus group participants and obtaining informed consent were made much easier by virtue of being members of the community. the transcribed data from the three focus groups were analysed separately in order to differentiate the responses of the three categories of participants: leaders of the deaf community, male participants, and female participants. focus group video tapes were converted to dvds using adobe premiere pro cs4 4.0.1 video software. both the dvds and the voice recordings were transcribed to text format. the transcription of the data from the dvds was done in two steps, namely ‘partial’ transcription and full transcription. the first step (‘partial’ transcription) involved viewing the dvds from all the focus groups to identify and transcribe into text format concerns that were raised by participants. this was an abridged version of the discussions, consisting of only the group discussion material needed for the development of the survey. since a verbatim transcription of the dvds would require significant time and delay the development of the survey, an abbreviated procedure was employed. the second step was a ‘full’ transcription of the video tapes. the full transcription represented the data from the focus groups that were used to complement survey results from the final survey sample. survey transcripts from the focus group video and audio, two existing surveys – the 2003 ghana demographic and health survey (gdhs) and a survey on srh status amongst people with disabilities in ghana – and two reports on adolescent reproductive health in ghana were used to develop the survey.the issues included in the survey were problematic areas drawn from the literature and additional concerns identified in the analysis of the focus groups transcripts. the final survey explored issues relating to factors influencing visits to srh centres, organisations providing srh services, srh problems amongst deaf people, sources of information on srh issues, level of knowledge on stis and pregnancy, contraception knowledge and use, and importance and satisfaction ratings of srh issues and services. based on advice from the gnad, all the survey interviews were conducted in groups with the exception of the tamale participants, who were interviewed individually. each interview session involved gathering participants in a single room, distributing surveys and providing instructions. research staff provided assistance and answered questions. some of the items were written on blackboards and flip charts, which made it easier to explain items to all the respondents at the same time. the survey was conducted by the researcher and his two research assistants in gsl. basic descriptive statistics were used to analyse and summarise the survey data. responses to the survey items were entered into a statistical package for the social sciences (spss) data file, and cross-tabulations and chi-square statistics were computed to compare response differences across age and gender groups. findings this study was undertaken to assess the srh needs of the deaf community in ghana, specifically those who use gsl, in order to find ways of improving access to srh information and services. the findings from the study revealed that a wide range of factors limited access to vital srh information and services to the deaf population in ghana. for example, focus group findings indicated that deaf people encounter numerous obstacles when accessing srh information and services. the obstacles are primarily associated with communication, but issues such as privacy and confidentiality at srh centres, illiteracy amongst deaf people, ignorance of deaf people‘s needs, negative attitude towards deaf people, interpreters’ competence, and limited time for consultation have also contributed significantly in making health information and services inaccessible to the deaf community. findings from the survey indicated that the level of knowledge on srh issues amongst deaf people, particularly amongst adolescents, was low, possibly due to limited access to professional sources of information. this finding seems to support focus group findings about the difficulties deaf people face in accessing information from srh centres. findings of the study were consistent with previous evaluations of general disability in ghana and show many similarities between the deaf community in ghana and the general population regarding knowledge and practice of srh issues – knowledge of srh issues is high but practice is low (ghana statistical service, noguchi memorial institute for medical research & orc macro 2004). the study findings also corroborated findings from other studies which indicate that health professionals were unable to communicate effectively with their deaf clients, with a negative impact on the quality of healthcare (margellos-anast et al. 2005; mottram 1999). whilst the main aim of the study was to provide information to guide policy development, programme design and service provision for the deaf community in ghana, it also has important methodological and ethical implications for conducting research with deaf people. these include the suitability of applying traditional data collection methods such as focus groups and surveys in research with deaf respondents and issues concerning obtaining informed consent and protecting the privacy and confidentiality of participants. these issues are discussed in the following sections. methodological issues top ↑ transcribing focus group the major methodological issue relating to the focus groups concerns transcribing and translating the video and audio recordings from sign language to word format. in the case of focus groups with hearing participants, audio recordings are transcribed verbatim, so that the ‘voices’ of participants are captured verbatim. with deaf participants, who use sign language, transcripts from video tapes may not represent the ‘voices’ of the participants because transcription will not be in sign language, but rather in english; as such, quotes will not be in the original language, which is sign language. this may affect the original meaning of the statements in sign language. the difficulty of transcribing sign language video tapes to text has been discussed by ladd (2003). according to ladd (2003:209) there are difficulties ‘… whenever the responses from deaf participants required more than a “flat” english rendering of what was signed.’ this is more so in the current study because discussions in the focus groups were exclusively in the sign language, and there were difficulties making direct quotes from what has been signed. conducting surveys issues relating to the survey concern the most appropriate approach to administer surveys with deaf respondents with diverse characteristics and the ability of respondents to understand survey items. in the present study, the survey respondents were interviewed in groups. each interview session involved gathering participants in a single room, distributing surveys and providing instructions, whilst research staff went round to provide assistance and answered questions. the group interview sessions made it easier to administer the surveys because deaf people do not live in clustered locations, making it difficult to identify and recruit deaf subjects for individual interview sessions. however, this group interview strategy was not without difficulties. the main challenge was the difficult to manage the group interview sessions due to differences in the level of comprehension of survey items. although some of the items were written on blackboards to make explanation easier – it made it possible to explain items to all the respondents at the same time without having to go round to assist each respondent who needed help – it was still difficult to handle the group effectively. the group interviews required more research assistants to assist respondents as almost every respondent wanted help because of the difficulty understanding survey items. there can be no universal rules on this issue; the best approach depends on many factors, including the time available for the study and the deaf subjects involved. researchers should have adequate knowledge of the composition of their deaf subjects, and be flexible when designing and implementing research methods with deaf people. related to the above is respondents’ difficulty reading and understanding survey items. it has been noted that when surveys are written in respondents’ second language, their ability to understand and respond accurately to the survey items in order to reflect their real opinion or attitude may be inhibited (turner 1993). as such, understanding survey items written in english can be challenging for deaf respondents whose english reading skill is low. indeed, many respondents in the current study had difficulties understanding the survey items. the low reading skills of respondents is compounded by the sensitive nature of srh issues in the ghanaian culture, as well as the fact that gsl has fewer concepts related to the topic; there are concepts in the english language that do not exist in the gsl, such as ‘infection/contract’, ‘symptoms’, ‘uid’, ‘implant’, ‘female sterilisation’, and ‘male sterilisation’. these semantic differences and the general low literacy level amongst participants made it difficult to communicate these concepts. these problems may have resulted in the mistranslation of some concepts and may have made understanding survey items difficult for some participants. researchers writing survey items should therefore take into consideration the linguistic barriers and communication preferences of the deaf participants and ensure that options with regard to communication exist for all participants in the study. comparing research findings although comparing research findings drawn from one population with another population is a common strategy in contemporary research, comparisons between deaf people and hearing people may be inappropriate (pollard 1992). hence, the suitability of comparing study findings involving deaf subjects with those involving hearing subjects can be challenged because of differences in population and setting. this is particularly so in ghana because deafness is viewed as a medical pathology and not a cultural phenomenon. pollard (1992) warned of the need to make sure that, when differences are observed in comparing deaf and hearing people, such differences should not lead to conclusions that will be derogatory or demeaning to either group. notwithstanding the diversity in the deaf community, there are significant differences between deaf and hearing people that should be taken into account when comparing research findings from one of the populations with the other. ethical consideration top ↑ obtaining informed consent obtaining informed consent from research participants forms a vital part of the research process, and demands more than requesting signatures from participants. investigators must ensure that potential subjects made informed decisions about whether or not they would want to participate in the research. this decision must be made freely, without coercion, and must be based on a clear understanding of what participation involves (pedroni & pimple 2001). this requires that research subjects are able to read and understand the consent forms in order to make informed decisions about their participation in the study.there are therefore concerns about the appropriateness of using informed consent forms not written in the first language of the participants. thus using informed consent forms written in english with deaf participants lead to some ethnical concerns. the current study used informed consent forms written in english; however, english is a second language for many deaf people. as a result, many of participants had difficulty understanding the informed consent forms. consequently, informed consent in english may not be appropriate for some deaf subjects. pollard (2002) observes that the low literacy level amongst deaf people can make it difficult for them to understand informed consent forms. even the most accurate translation of the consent forms may still deprive some deaf people of vital information they need to make informed decisions about their involvement in a research study. signing the informed consent form therefore does not necessarily imply that a deaf subject has made an informed decision to participate in the study (pollard 2002). overcoming these concerns require adopting options that are linguistically and culturally suitable for all deaf subjects. confidentiality and anonymity of focus group participants researchers adopt various strategies to accurately capture feelings, experiences and reactions during focus group interactions. with hearing populations, the use of both video and audio recordings of focus group sessions is optional. in the case of focus groups with deaf participants, however, only video can be employed and sign interpreters may be needed to record and interpret what participants sign. if an investigator cannot do these tasks independently, then hiring video operators and sign language interpreters is necessary – people who are deeply involved in the discussion yet are not true participants. the presence of these ancillary staff compromises the anonymity and confidentiality of the data collection process (pollard 2002). indeed, in the present study participants in the focus groups were not comfortable with an ‘outsider’ doing the video tape recording because they thought their privacy would be compromised. videos create additional privacy concerns since images are more readily identified than voice alone. disguising the faces of participants in order to hide their identity is impossible without distorting or obscuring what was signed. and because the deaf community is closely knitted, extreme care must be taken in order to preserve the anonymity and confidentiality of participants (ladd 2003; pollard 2002). this is particularly so for users of gsl, since the majority attended the only senior high for the deaf in ghana and so almost everyone knows everyone else. conclusion top ↑ the purpose of the study was to identify the srh needs of the deaf community in ghana in order to identify concerns, and then make these visible for subsequent policy interventions. since not much is known about the srh status of the deaf community in ghana, the study findings were also to complement existing knowledge on the topic so as to better explain the srh experiences of the deaf population in ghana. the study findings indicated that the application of traditional research methods to studies involving deaf participants presents many methodological challenges, which include respondents’ inability to understand survey items, the best way of administering surveys to deaf respondents, and transcribing focus group video tapes. there were also ethical concerns relating to protecting the privacy and confidentially of participants and obtaining informed consent. in addition, there were challenges arising from misconceptions and the sensitive nature of srh issues in the ghanaian culture, the limited english reading skills of respondents, and the fact that ghanaian sign language has fewer concepts relating to the topic of srh. the study thus highlighted the methodological and ethical complexities in conducting srh research with deaf people. it should be noted that although the focus of the discussion was the deaf population in ghana, the issues discussed extend beyond this population; the study has wider implications for research with deaf people in general. in order words, the study provides important background knowledge concerning the diversity of deaf identities and its implications, that is, how what it is to be deaf influences research and how it can complicate research with deaf people for many researchers, especially those unfamiliar with the nature of deaf identities. finally, whilst efforts were made to avoid sweeping generalisations, it may happen, and therefore it is essential to acknowledge this limitation. the significance of the study lies in alerting researchers about the importance of acknowledging the different ways of being deaf and how these influence research. any research endeavour with deaf people that ignores the implications of diversity in the deaf community and the fluid deaf identity risks undermining the rigor and validity of the findings. researchers should endeavour to establish good relationships with and acquire a good knowledge of the diverse groups in the deaf community. in this way, they will better understand the cultural values and the different categories of deaf identities. acknowledgements top ↑ i would like to thank the national association of the deaf, the entire deaf community in ghana and individuals who in diverse ways contributed to the success of this project. the financial assistance by the international fellowships programme and the department of disability and human development, university of illinois at chicago, usa contributed significantly to the completion of this project. my sincere thanks also go to my doctoral committee and all those who read through the draft manuscript. competing interests the author declares that she has no financial or personal relationship(s) that may have inappropriately 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social care research, viewed 06 january 2013, from http://www.sscr.nihr.ac.uk abstract introduction research methods and design findings discussion implications limitations conclusion acknowledgements references about the author(s) lior blumenthal department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa maximus m. sefotho department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa citation blumenthal, l. & sefotho, m.m., 2022, ‘the effects of cognitive effort on academic performance of learners with cochlear implants in a private mainstream school in gauteng’, african journal of disability 11(0), a886. https://doi.org/10.4102/ajod.v11i0.886 original research the effects of cognitive effort on academic performance of learners with cochlear implants in a private mainstream school in gauteng lior blumenthal, maximus m. sefotho received: 20 apr. 2021; accepted: 09 june 2022; published: 28 oct. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: this research investigated the phenomenon of learners with cochlear implants and their challenges with cognitive effort in private mainstream schools in gauteng. many learners with cochlear implants encounter academic and social challenges at school, despite the advanced technology. objectives: this study aimed to explore how learners with cochlear implants experience cognitive effort and whether it impacts their academic potential. methods: research was conducted using a phenomenological design. phenomenography was used as theoretical framework to perceive, interpret and understand experiences of the cochlear implant recipients. the six former learners who were recipients of cochlear implants were selected using purposive sampling. semistructured interviews were utilised to gather information, which was analysed using thematic content analysis. results: five themes emerged from the analysis, namely auditory challenges, cognitive functioning, peer interactions, emotional health and concealed disability. this article only presents the first theme of cognitive functioning and highlights three subthemes related to cognitive effort. findings show that many learners struggled with their concentration span and fatigue, as a result of their cognitive effort difficulties. conclusion: this study demonstrated how learners with cochlear implants face challenges with cognitive effort at their mainstream schools. it indicates the need for awareness of and training on educating learners with cochlear implants to help them reach their academic potential. contribution: this study contributes a unique focus on learners with cochlear implants in mainstream schools in south africa. the study highlights that cognitive effort of learners with cochlear implants influenced their capabilities to multitask and retain information, despite the effort they have to put into listening. further research should be conducted to develop interventions that could lesson cognitive effort while increasing learner productivity. the article responds to disability studies and inclusive education. keywords: auditory challenges; cognitive effort; cochlear implants; cognitive effort fatigue; disability; phenomenology. introduction this article investigated gaps in the literature on mainstream education for learners with cochlear implants regarding cognitive effort. the objective was to obtain insight into the experiences and challenges of cognitive effort, which learners with cochlear implants experience in south african mainstream schools. furthermore, this article sought out to explore the various factors that contribute to the challenges of cognitive effort for these learners. globally, there is limited research on the cognitive effort of learners with cochlear implants. there is a gap in literature on the challenges that learners with cochlear implants face with cognitive effort in south africa. this lack of data highlights the significance of this study because it examines the reasons for the cognitive effort challenges that learners with cochlear implants experience. cognitive effort refers to the amount of thinking and interpretation required in order to decipher verbal information (van trijp 2016). westbrook and braver (2015:395), equated cognitive effort with ‘effort-based decision-making’ on the auditory information received in class for effective meaning-making. cognitive effort assists with optimisation of the information received in order to allow learners with cochlear implants to succeed in their studies (kuldas et al. 2014). learners with cochlear implants communicate that they need additional cognitive effort to interpret spoken information, and therefore, this impacts their capacity to do more tasks at one time and hold onto information (purdy et al. 2017). more effort is required to decode spoken information in the classroom. when their cognitive effort is compromised, it is harder to concentrate in class. this therefore affects their academic capabilities. this study set out to establish the impact of cognitive effort on learners with cochlear implants. cognitive effort manifests itself in various ways. this study investigated ways to ascertain that learners have the support and guidance they require to achieve their academic potential. hearing impairments and their effect on the academic potential of learners in mainstream schools is the main focus of south african literature (kemp, skrebneva & krüger 2011; skrebneva 2010). this research attempted to bridge the gap regarding understanding of the challenges with cognitive effort that learners with cochlear implants experience. the study aligns with the inclusion mandate of south africa through focused projects such as the centre for deaf studies at the university of witwatersrand. the centre advocates for ‘moving beyond hearing screening’ (störbeck & pittman 2008:36) to inclusion of learners with disabilities from early childhood development (ecd) (storbeck & moodley 2011). this addresses the national policy on inclusion, the education white paper 6 (du plessis 2013) and the sustainable development goals: (1) goal 3, good health and well-being; (2) goal 4, quality education; and (3) goal 10, reduced inequalities (haywood et al. 2019), with a view to specifically include learners with cochlear implants. the cochlear implant is an advanced and sophisticated technology that is used to provide hearing abilities for individuals who are profoundly hearing impaired. it is an artificial device that improves hearing by utilising electrical stimulations (piotrowska, paradowska-stankiewicz & skarżyński 2017). it consists of an external device (briggs 2011) and internal components that operate in the inner ear (hainarosie, zainea & hainarosie 2014). the cochlear implant provides enough sounds and frequencies for the recipient to hear language, speech and environmental sounds for the recipient, but it does not restore the auditory sense (joseph & lassen 2013). the aim and purpose of the cochlear implant is to increase the hearing sense. cochlear implants have been available for learners who are hearing impaired since the 1990s, and many opportunities that were unavailable to them have now become accessible to them (fitzpatrick & olds 2015). as a result of this technology, many learners with cochlear implants are able to experience the realm of the auditory sense and can also learn and establish spoken language (vermeulen et al. 2012). cochlear implants have generally enabled learners who are hearing impaired to access mainstream schooling (de raeve 2014). in south africa at present, many learners with cochlear implants are enrolled at mainstream schools rather than attending specialised schools for learners who are hearing impaired (takala & sume 2018). however, many learners with cochlear implants face difficulties within their mainstream schools (diaz et al. 2019; punch & hyde 2010). learners with cochlear implants still encounter challenges of maintaining a similar pace to their hearing peers at school, despite the advancement in their hearing and speech. (marschark et al. 2019; punch & hyde 2010). these challenges include extended demands on their listening skills and working harder than their hearing peers to decode spoken information, especially when their teachers have accents different from their own. a factor that influences learners with cochlear implants in mainstream schools is cognitive effort. theoretical orientation phenomenology was used as a theoretical framework that oriented this study (larsen & adu 2021). the phenomenological framework guided the study in the interpretation and understanding of lived experiences of the cochlear implant recipients (yüksel & yıldırım 2015). phenomenology as a theoretical framework in this study served to anchor the investigation firmly in literature and linking to the results. marton (1981:180) described phenomenology as the ‘description, analysis and understanding of experiences, that is, research which is directed towards experiential description’. as a theoretical framework in this study, phenomenology helped to frame the researchers’ understanding of ‘ways in which people experience, interpret, understand, perceive or conceptualise a certain cognitive effort of learners with cochlear implants’ (orgill 2012:2608). as listening becomes a demanding cognitive task for learners with cochlear implants, cognitive effort can be perceived to alleviate probable cognitive dissonance (vaidis & bran 2019). in agreement with grant and osanloo (2014), phenomenology could be considered a theoretical framework or blueprint that ontologically, philosophically, epistemologically and methodologically resonates with the interpretive paradigm and phenomenological design of this study. research methods and design this study utilised a qualitative research method based on the phenomenological design (kafle 2011; khan 2014; ratislavová & ratislav 2014). according to busetto, wick and gumbinger (2020), qualitative research can be defined as the study of the nature of phenomena. in this study, phenomena studies centred on exploring how learners with cochlear implants experience cognitive effort and whether it impacts their academic potential. this provided the opportunity for the research process to be investigative and analytical (campbell 2014). in addition, the study utilised the phenomenological research design (kafle 2011) to investigate the cognitive effort of learners with cochlear implants at mainstream schools. the phenomenological design is described as flexible and adapted to suit the phenomena under investigation. in this study, it is the cognitive effort of learners with cochlear implants (holroyd 2001). the phenomenological design focuses on the experience in relation to what is under investigation. interpretative phenomenological analysis was used to deeply explore and analyse the participants’ viewpoints and perceptions (mole et al. 2019). phenomenology was utilised as a theoretical framework found appropriate to the study as it provides the researchers with the opportunities to explore the unique psychological considerations of the research participants’ perceptions of cognitive effort (murray & holmes 2014). participants the participants were contacted through the johannesburg cochlear implant centre (jcic). purposive sampling was utilised to sample participants required for the study (etikan, musa & alkassim 2016). to sample, the researcher selected certain participants who had the specific criteria for the study (acharya et al. 2013; etikan et al. 2016; jawale 2012). the criteria included participants who were cochlear implant recipients, over 18 years of age and who must have already graduated from mainstream high schools. participants younger than 18 years were excluded from the study. the participants included six cochlear implant recipients who attended mainstream schools in south africa. all participants had graduated from their schools over the last eight years. participants were former learners with cochlear implants at mainstream schools. there were six participants. three of them were female and between the ages of 21 and 25. the other three participants were male and between the ages of 24 and 27. the jcic provided the researchers with a list of the participants who fit the criteria. the researchers then contacted the participants and each of them replied confirming their willingness to participate in the study. the researchers then asked them for personal details and requested that they read and sign the consent form. after consent was granted, semistructured interviews were conducted at convenient times. data collection qualitative data collection methods supported the researchers to concentrate on the connotations of the data and to analyse through a critical and analytical approach (noble & smith 2014). to gather information on the experiences of the participants, semistructured interviews, which are qualitative data collection methods, were used (guest, namey & mitchell 2013; khan 2014; noble & smith 2014; tolley et al. 2016). a total of six individual interviews were conducted from june 2020 to july 2020. participants signed a consent form before the commencement of the interviews. all interviews were conducted through zoom, an online communication platform, which was necessary as a result of the coronavirus disease 2019 (covid-19) pandemic. the interviews lasted for 40 min – 55 min, depending on the participants’ responses. during the interviews, both the interviewer and interviewee enabled their camera functions so that they were able to view each other in order to make lip-reading possible, and the interviews were conducted in quiet spaces to avoid background noises. the interview guide was developed by the researchers beforehand, and it was used to gain information on the participants’ perspectives, as learners with cochlear implants, on the role of cognitive effort in their mainstream education. with consent acquired from the participants, the researchers utilised an audio-recorder to record the interviews. data analysis the researchers analysed the data according to the six phases of thematic analysis (braun, clarke & weate 2016; crowe, inder & porter 2015). firstly, the researchers engaged deeply with the data and immersed themselves by reading it repeatedly. they read it several times to isolate the foundational connotations and trends. then the researchers produced codes to identify the trends and themes and were proactive in searching for foundational and noteworthy ideas (braun et al. 2016). secondly, the researchers generated codes for the data. the researchers identified similarities and trends within the data (braun et al. 2016). thirdly, the researchers constructed themes from the data and categorised the data according to their respective themes (braun et al. 2016; crowe et al. 2015). fourthly, the researchers reviewed the potential themes (terry et al. 2017) and refined them. fifthly, the researchers defined and named the themes. the significance and focus of the themes were clearly identified and discussed (braun et al. 2016). sixthly, the researchers produced a report based on the data (terry et al. 2017). the discussions in the themes are linked to the interview transcripts (braun et al. 2016) and specific events are chosen to display themes and connect the study to the data in the literature review (braun et al. 2016). five themes emerged from the analysis, namely auditory challenges, cognitive functioning, peer interactions, emotional health and concealed disability. in this study, we only present the theme of cognitive functioning, highlighting the experiences of cognitive effort and how it impacts learners with cochlear implants’ academic potential. findings five themes emerged from the analysis. the themes were auditory challenges, cognitive functioning, peer interactions, emotional health and concealed disability. in the next section, we present data on cognitive effort of learners with cochlear implants in mainstream schools, as subthemes presented under the theme of cognitive functioning. these are experiences of cognitive effort, attention and cognitive effort and cognitive effort fatigue. participants’ responses that related to the research objective were presented verbatim. experiences of cognitive effort when one is required to consciously engage in mental work, it is known as cognitive effort. participants vocalised that they faced challenges with cognitive effort at their mainstream schools. they found themselves working harder than their hearing peers to decode spoken information. some of the participants spoke about the extra effort it required for them to listen at school. the extra effort that they put into listening to the spoken information influenced their capabilities to multitask and retain information. the understanding of this role was apparent in the following extracts from research participants: ‘i think because you have to, like, obviously listen a bit harder, whereas another person will just quickly pick up on the words that [are] being said and you have to actually concentrate harder to try and make out what the person is saying. and it can be, i do feel you have to concentrate a lot harder.’ (jill, graduated in 2013, mainstream school) ‘i just think it comes naturally to deaf people or hard of hearing people that they will listen harder and concentrate a bit harder, even though it doesn’t show that they are doing it, but i think your internal is working harder.’ (matthew, graduated in 2013, mainstream school) amy, a participant who graduated form her mainstream school in 2017 said that she frequently did additional schoolwork at home to make up for what she did not hear in the classroom. she reported, ‘i actually found myself in the end studying more than actually listening in class, a lot of times. sometimes i have to self-study if i didn’t know what was going on’. she had to put in more effort to grasp spoken information, whereas her hearing peers needed to put in less effort in the same circumstance. matthew, a participant who graduated from a mainstream school in 2013 also commented, ‘because obviously i have to listen extra hard’. he expressed further that learners with cochlear implants are required to put in more cognitive effort to hear in class and it becomes natural for them to put in that additional cognitive effort. he said that it may not be noticeable to others, but internally, learners with cochlear implants work harder just to comprehend spoken language. attention and cognitive effort after rigorous analysis of the interview transcripts, two major themes emerged, namely attention and fatigue. the first major theme from this study was the role of attention in cognitive effort of learners with cochlear implants in mainstream schools. attention is an integral part of learning at school. it provides the learners with the ability to focus on the task at hand. the participants found that they were encountering challenges in maintaining their attention in their mainstream classrooms. one of the participants stated ‘i tend to get distracted quite easily sometimes’ (peter, graduated in 2013, mainstream school). another participant reported that his ‘attention just goes out of the window’ (gary, graduated in 2013, mainstream school). one of the participants was provided with prescribed medication in high school to assist her challenges with concentration. she stated, ‘well, only later on in my life did i go on concerta’. she described her attention span as ‘definitely in and out’. (amy, graduated in 2017, mainstream school). another participant, iris, said that she would easily lose focus in class when her attention was diverted by other noises and sounds: ‘i would definitely get distracted quite easily in class. like i said earlier, i would hear all these different noises and then i would, you know, try and listen to that instead of listening to my teacher.’ (iris, graduated in 2013, mainstream school). one of the participants jill, who graduated from a mainstream school in 2013 said: ‘my concentration span was pretty short. even in a 30 min lesson, i wouldn’t be able to listen to the entire lesson’. cognitive effort fatigue the second major theme to emerge from this study was fatigue. energy levels are an important factor for success at school. this is because good energy levels can assist learners in completing their required tasks and putting effort into their education. some participants reported that they experienced additional exhaustion at their mainstream schools. as learners with cochlear implants, they found that they were more tired than their hearing peers. a participant stated: ‘i definitely found that i was a lot more tired than my friends, and especially because, like, you have to concentrate to listen, whereas for them it’s like a natural thing.’ (amy, graduated in 2017, mainstream school). she said, ‘i had no energy or willpower to want to do homework, ever. yeah, so that’s why i actually got the tutor, because i was feeling that [i can’t do anything]’. she explained, ‘i just felt i was getting a lot more tired because i wasn’t just concentrating on the work; i was concentrating to hear’. another participant named jill and also graduated a main stream school in 2013 said, ‘i think my energy levels are generally quite low in school, compared with what they are now, for example’. she said that she ‘was tired a lot’. she expressed that having to apply additional effort in order to grasp everything said at school was a tiring experience. she explained it by saying, ‘it can be like exhausting, you know, having to really utilise your cochlear implants then’. one of the participants, matthew who graduated from a mainstream school in 2013 communicated. ‘i might be tired at the end of the day from listening’. this section summarised and discussed the results of the thematic analysis. two themes emerged. the themes were demonstrated by verbatim quotes of the participants. the results revealed that attention and fatigue contributed to the challenges that learners with cochlear implants encounter with cognitive effort at their mainstream schools. the participants discussed their challenges with cognitive effort and how they were required to put in more effort than their peers to understand verbal data. participants often found themselves struggling to focus and also experienced fatigue in class. discussion cognitive effort refers to conscious intellectual effort required to complete certain tasks. effort refers to the amount one has to engage with tasks that are demanding in nature (westbrook & braver 2015). cognitive effort is required from learners at school. many situations in the classroom need high-level cognitive effort on the part of the learners (jorgensen & messersmith 2015). they need to put in a certain amount of cognitive effort to engage with the learning material and tasks. this study found that learners with cochlear implants encounter challenges with cognitive effort in their mainstream schools. these learners, despite having sophisticated hearing technology, still face challenges with their hearing. learners with cochlear implants obtain auditory stimulation from their cochlear implant devices, but not completely at the level that is considered normal (nakeva von mentzer 2014). some challenges include noisy classrooms, as they find it difficult to isolate individual sounds (dammeyer 2010; hoffman et al. 2016). another challenge is difficulty following when their teachers have accents different from their own. in order to manage these challenging listening demands, learners with cochlear implants may be required to rely more on controlled cognitive effort towards the goal of understanding spoken information (pichora-fuller et al. 2016). the reason for this could be that they have to use additional cognitive effort to decode spoken information because the auditory information is not processed naturally for them. cognitive effort is a limited-capacity resource that is used with the intention of overcoming difficult listening demands (pichora-fuller et al. 2016). when one task becomes more demanding or challenging, in this case trying to comprehend speech, more cognitive effort is required to maintain scholastic achievements (faulkner & pisoni 2013). an increase in cognitive effort related to performing the primary task causes lower performance on the secondary task (gosselin & gagné 2010). this can compromise and challenge their cognitive effort capacities in the classroom, which in turn could impact their academic potential. from the interviews with the participants, two major themes emerged, namely attention and fatigue. attention was striking, as most of the participants reported to have faced challenges with their concentration span at their mainstream schools. these participants claimed that they struggled with maintaining their focus in the classroom and they were easily distracted. regarding attention and concentration, findings from studies by quittner et al. (2014) and spencer and marschark (2003) confirmed that learners with cochlear implants perform lower than average. the participants communicated that they were often unable to maintain their concentration in class and therefore they would miss some of the lesson content. this could be because of the extra effort required by learners with cochlear implants to grasp spoken information at their mainstream schools. the reason for this could be that because their cognitive effort was already being overused and overworked, their concentration span was compromised. mehrkian et al. (2019) stated that this causes attention and focus challenges. this affects learners with cochlear implants at school because they do not grasp information in class when they are not focused. this increases the pressure on them to catch up on what they missed. the requirement for additional cognitive effort also frequently causes exhaustion and lower energy levels. fatigue was another theme that emerged from the data. watson, verschuur and lathlean (2016) stated that learners with cochlear implants often tend to feel tired and experience lower energy levels. learners with cochlear implants, because of the additional cognitive effort they need to use in order to process spoken information, get tired easier and more quickly. learners with cochlear implants seem to be at greater risk for experiencing fatigue and low energy levels (hornsby & kipp 2016). this may be caused by their challenges in processing auditory signals, including spoken language (hornsby & kipp 2016). purdy et al. (2017) and mehrkian et al. (2019) stated that learners with cochlear implants need additional cognitive effort to decode auditory data, and more energy is utilised to decipher it. some of the participants reported that it was very tiring for them to put in the extra effort to listen all day at school. they experienced more exhaustion than their fellow hearing peers. the additional cognitive effort that was needed by these learners to hear information in class and to decode spoken information fatigued them during and after school. this impacts learners with cochlear implants at school because it is more difficult for them to work and complete tasks effectively with lower energy levels. this may lead these learners to not reaching their academic potential to the fullest (mehrkian et al. 2019). the effects of cognitive effort on academic performance could manifest in increased self-motivation of the learners with cochlear implants (kuldas et al. 2014). increased cognitive effort is expected to positively impact academic performance (bircan & sungur 2016). although it may be strenuous for students with cochlear implants to increase their cognitive effort in order to achieve their learning goals, it appears imperative that they do. academic performance that is positively influenced by cognitive effort depends mainly on the motivation to succeed. techniques such as self-study add to the effort to succeed. to conclude, learners with cochlear implants are required to use more cognitive effort to listen to and to grasp spoken information in their mainstream classrooms. this causes them to face challenges with their attention and focus (mehrkian et al. 2019). in addition, these learners also end up feeling more fatigued than their peers (watson et al. 2016). implications this study provides insights that would be an asset and advantage for teachers of learners with cochlear implants and other stakeholders. the studies that have been conducted in south africa so far have mainly concentrated on hearing-impaired learners’ experiences at school. research that has focused directly on learners with cochlear implants in mainstream schools in south africa is very limited. furthermore, the research on the cognitive effort, attention span and fatigue experienced by learners with cochlear implants is also generally limited. recommendations for practice in order to address the cognitive effort challenges of learners with cochlear implants, the following strategies are recommended: it would be beneficial for the learner with cochlear implants to be provided with the teacher’s notes in written form, even if summarised beforehand. this could be done instead of these students having to listen and write down the dictated information. whilst the hearing peers take down the dictated information, the learners with cochlear implants can follow and highlight the printed notes. this helps the learners because not much cognitive effort will be expended rapidly. if the option of printed notes is not available or possible, the teacher could scan and check the lesson notes taken by the learner with cochlear implants to confirm their completeness and correctness. this would help the learners in case their cognitive effort, energy levels or attention dwindled during the class. teachers should be conscious that the learner with cochlear implants may experience fatigue. it would be useful to reduce the time the learners attend school or participate in class. this would assist their energy levels. during the lesson, the teacher could make subtle checks on the learner and maintain awareness and understanding of the learners’ concentration, energy levels and management of the lesson’s content. it is recommended that a buddy system be established for the learners with cochlear implants. another learner could be selected to help in each subject. the buddy should be seated next to the learner to give support during class. it is recommended that various buddies be selected and spread over different subjects to reduce the responsibility being overwhelming. this would decrease the pressure on the teachers and provide the learner with cochlear implants with the additional support. recommendations for policy learners with cochlear implants have been educated in mainstream schools despite their hearing impairment. despite this, teachers in mainstream schools have usually not been trained specifically to help and assist these learners: it is recommended that policies incorporate the training needed for teachers and educators of learners with cochlear implants. school policies should encompass and implement the necessary support for these learners. mainstream schools should be familiar with the cognitive effort challenges that learners with cochlear implants face in the classroom. they should also understand the challenges these learners face regarding attention and fatigue. all educators should have sufficient knowledge of policies that support these learners so that they are able to reach their full academic potential. recommendations for research this research explored how cochlear implant recipients experienced cognitive effort challenges whilst attending their mainstream schools. each participant in this study graduated from their mainstream schools within the last eight years. the technical advances in the cochlear implant technology have not been as many since then. therefore, research could direct its focus on participants who have completed their mainstream schooling more recently. researchers could also aim to direct their research to recipients of cochlear implants who are students at mainstream schools currently. the participants of this study were recipients of cochlear implants who were learners who graduated from mainstream schools. future research could focus on other participants. some examples would be health professionals who work directly with these learners, such as audiologists and speech therapists. ear, nose and throat (ent) doctors who perform cochlear implant surgeries could also be incorporated in research. researchers could also involve the parents and families of these learners in the research to obtain more information. research could focus on the coping mechanisms of learners with cochlear implants. frequently, learners with cochlear implants are not aware of how to manage in their mainstream schools regarding cognitive effort, attention and fatigue. they are also frequently unaware of the accommodations from which they can benefit. various health professionals (such as audiologists, speech therapists and educational psychologists), trained educators and previous graduates who are recipients of cochlear implants could give these learners the required assistance and tools. limitations this study had a small sample size of six participants. furthermore, only one data collection method, the semistructured interviews, was utilised. therefore, this study cannot be generalised to other contexts and circumstances. however, qualitative studies are not supposed to have large samples (holloway & galvin 2016). in addition, they provide in-depth information (given 2015) by utilising the perceptions and observations of the participants through the interpretive paradigm and method. conclusion learners with cochlear implants encounter challenges with cognitive effort in mainstream schools. cognitive effort impacts these learners in two different ways. the first is their attention. learners with cochlear implants lose focus and get distracted easily. this is because their cognitive effort is compromised by having to constantly decode spoken information, which they do not do naturally. the second is fatigue. as a result of the additional cognitive effort that learners with cochlear implants need to put into listening in class, learners become exhausted. this study showed that in order to assist learners with cochlear implants at mainstream schools, they require interventions that help them manage the cognitive effort they are using in their classrooms. the findings of this study could contribute to general awareness of the challenges that learners with cochlear implants encounter in mainstream schools. it is recommended that teachers of learners with cochlear implants receive training on assisting these learners in managing challenges with cognitive effort. this study could also be used as a guide for the learners themselves to manage the cognitive effort challenges that they encounter. they would also find value and assistance from the recommendations provided in the study. this study is a crucial advancement towards the inclusion of learners with cochlear implants in south africa. it is desired that it will be a small contribution towards the acknowledgement and understanding of the academic potential of learners with cochlear implants and how to support them in mainstream schools. acknowledgements the authors are grateful for the support provided by the faculty of education research office in supporting the publication of this article. competing interests the authors have declared that no competing interests exist. authors’ contributions l.b. conceptualised and composed the manuscript under the guidance of the second author. m.m.s. supervised the research from which the manuscript was developed, provided guidance in article writing, reviewed and edited the manuscript. ethical considerations the faculty of education research ethics committee of the university of johannesburg approved of the study protocol (ref. no. sem 1-2020-045). permission was obtained from the participants for the johannesburg cochlear implant centre (jcic) to release their contact details to the researcher. most importantly, the participants signed consent forms before data collection. the consent form consisted of information about the research, the purpose of their participation and their rights to confidentiality and to withdraw at any time during the research. the form was sent to the participants electronically. they printed, scanned and sent the signed form back to the researcher electronically. funding information the research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article, as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references acharya, a.s., prakash, a., saxena, p. & nigam, a., 2013, ‘sampling: why and how of it’, indian journal of medical specialties 4(2), 330–333. https://doi.org/10.7713/ijms.2013.0032 bircan, h. & sungur, s., 2016, ‘the role of motivation and cognitive engagement in science achievement’, science education international 27(4), 509–529. briggs, r.j., 2011, ‘future technology in cochlear implants: assessing the benefit’, 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gasa african journal of disability | vol 13 | a1477 | 27 november 2024 original research leaving no one behind: disability and hiv prevention, knowledge among adults in a population cohort in uganda joseph o. mugisha, ronald makanga, beatrice w. kimono, ivan kasamba african journal of disability | vol 13 | a1497 | 05 december 2024 497 506 513 521 532 542 http://www.ajod.org open access table of contents reviewer acknowledgement african journal of disability | vol 13 | a1598 | 12 november 2024 550 vol 13 (2024) page iv of iv abstract introduction literature review main aim of study research question research design data collection methods description of instruments interview of adolescents interview of health professionals results discussion conclusion acknowledgements references about the author(s) monica araujo department of speech pathology and audiology, faculty of humanities, university of the witwatersrand, johannesburg, south africa munyane mophosho department of speech therapy and audiology, faculty of humanities, university of the witwatersrand, johannesburg, south africa sharon moonsamy department of speech therapy and audiology, faculty of humanities, university of the witwatersrand, johannesburg, south africa citation araujo, m., mophosho, m. & moonsamy, s., 2022, ‘communication strategies used by adolescents with autism spectrum disorder and health professionals during treatment’, african journal of disability 11(0), a811. https://doi.org/10.4102/ajod.v11i0.811 original research communication strategies used by adolescents with autism spectrum disorder and health professionals during treatment monica araujo, munyane mophosho, sharon moonsamy received: 12 oct. 2020; accepted: 24 nov. 2021; published: 31 mar. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: autism spectrum disorder (asd) is a developmental disorder, which affects social communicative capabilities. the research study has shown that asd studies are focused on young children, excluding adolescents and adults: and it is understudied in the context of south africa. objective: this study examined the interactional communication strategies of adolescents with asd and health professionals during different treatment consultations to identify the interactional styles and communication strategies utilised by adolescents with asd and their respective healthcare professionals in a variety of scenarios in order to generate management strategies for future healthcare professional communication training. method: a multi-case study design with a qualitative research approach has been used. four adolescents with a moderate form of asd and four health practitioners were interviewed. participants were chosen by purpose and snowball sampling. semi-structured, open-ended interviews were used for health professionals to collect information on the various interaction types and communication methods used, as well as their interpretations of these methods. conversely, adapted face-to-face interviews were used to collect similar knowledge from adolescents themselves. the findings were qualitatively analysed on a case-by-case and cross-case basis by thematic analysis techniques. results: the findings indicated that asd adolescents have interaction types that influence intervention to various degrees. in comparison to motor therapies such as occupational therapy and physiotherapy, interaction types have a greater impact on psychiatry and psychology, which depend mainly on verbal communication. intuitively, to promote contact with these teens, all health practitioners changed their own interaction styles. they used techniques of clarification and repair. the therapists shared the intention to learn a range of successful ways to strengthen future experiences with asd between themselves and adolescents. conclusion: the findings indicate that practitioners can benefit from altering their interaction styles, and that approaches for promoting successful interactions and in establishing rapport could be shared with other professionals in the future. keywords: asd; adolescents; health professionals; interactional styles; communication breakdowns; effective interactional strategies. introduction individuals with autism spectrum disorder (asd) exhibit both social, interactional and communication breakdowns (mody & belliveau 2013). as a result of the complex communication needs of these individuals, many of them require social skills training and effective communication support through the use of beneficial communication strategies and possibly even augmentative and alternative communication (aac) (trembath et al. 2014). moreover, many of these individuals require specialised and individualised care (sicile-kira & sicile-kira 2012), and as a result, they normally consult a combination of health professionals who take on different roles and responsibilities in addressing the interactional breakdowns experienced by individuals with asd. these professionals include physicians, psychologists, speech language therapists (slts), physical therapists and occupational therapists (ots) (sicile-kira & sicile-kira 2012). engagements between the healthcare practitioners and the individual with asd hinge on their communication interactions. buller and buller (1987), indicated that patients who believe that their physicians’ communication style is relationship-oriented are more likely to be satisfied with their medical care. many studies on communication and interactional styles between patients and healthcare practitioners often reflect interactions amongst medical doctors and their patients, as well as between nurses and their patients (levin 2005; macdonald, carnevale & razack 2007). limited evidence of published studies between healthcare professions (slts, ots, physiotherapists) and individuals with asd have been observed. hence, this study examined the interactional styles and communication strategies used by adolescents with asd and their health professionals, as well as perspectives of their parents, within gauteng, south africa. for the purpose of this article, the interactional styles and communication strategies used by adolescents with asd and their health professionals are highlighted. literature review in south africa, the prevalence of asd is still unknown. according to springer et al. (2013), there were over 270 000 individuals with asd in south africa and a predicted 5000 new cases of asd each year, with this number increasing yearly (springer et al. 2013). despite the growing rate of asd, local and international research on autism lags behind that of other medical conditions and psychiatric disorders (thurm & swedo 2012). in addition, the research on asd that exists focuses mainly on young children. thus, there remains substantial gap in the literature on the communication, participation and overall life challenges experienced by individuals with asd beyond childhood, including adolescents and adults (howlin & taylor 2015; miller et al. 2014). the popular areas of focus in asd research have explored the effects of asd on the individual’s activities of daily living, well-being, and aspects of friendship, loneliness, stigma, general social challenges, independence, parent perceptions and distress. however, fewer studies are currently available on the interactional styles and communication breakdowns experienced by adolescents with asd in their therapy interactions with their health professionals. as individuals with asd interact with multiple health professionals throughout their lifetime, understanding the common interactional styles and breakdowns would have implications for the success of various interventions. thus, communication styles and interactions between health professionals and patients are explored so that communication breakdowns can be identified, as communication has implications for health behaviours. when young typically developing (td) children’s communication breaks down, they create repair strategies. it’s an important aspect of the language learning process. repair mechanisms are still in the early stages of development and begins without instruction at a young age. children with sentences with mean length utterance (mlu) of 1.5 to 2.9 repeat or revise their message in response to requests for clarification. when prompted to clarify, 4-year-olds respond positively and are sensitive to signs that the clarification satisfied the listener. children from 34 to 67 months react to various forms of clarification requests at least 80% of the time. so language learners who are relatively inexperienced are sensitive to criticism that their messages are not being comprehended. they have the ability to change in order to be understood during interactions (anderson 2013). however, one of the most challenging problems for children with communication challenges such as asd is learning how to communicate appropriately and to repair communication breakdowns. their conversation is comparable to that of younger td children whose language is in the process of developing (e.g. reach for food or vocalise to gain attention). these alternative techniques are usually misconstrued by others who hear them; therefore, providing children with tools to repair misunderstandings is critical if they are to effectively influence the behaviour of others. when the first communication attempt fails, the ability to continue communicating whilst also changing, repeating or revising a signal may be defined as a communicative repair (wetherby & prizant 1993). brady et al. (2002), halle et al. (2004), keen (2003) and wetherby et al. (1998) have suggested a link between communication breakdowns, repairs and problem behaviour in children. keen (2003) proposed two theories on behaviours in the context of broken communication, that is, a type of protest or frustration after a failed attempt to express a need. scudder and tremain (1992) discovered that children with cognitive delays become more frustrated as the request sequence advanced. according to keen, a second explanation for challenging behaviour during breakdowns is that it may be a form of repair strategy. halle et al. (2004) claimed that behaviourally, repairs happening in response to breakdowns are analogous to behaviour extinction. if the ‘new’ repair topography succeeds (e.g. the child gets the desired object), the previously reinforced topography weakens and the more problematic behaviour strengthens. if the problem conduct is reinforced regularly, it may become an initial request topography as well. communication repair strategies are therefore important in client and practitioner interactions. the type of communication between practitioner and patient or client has been found to influence health behaviour of individuals. patients and practitioners frequently have divergent viewpoints on therapeutic encounters, with patients placing a value on the practitioner’s ability to comprehend and accept their status. whilst patients’ perceptions are critical to clinical outcome, they may not accurately reflect all relevant aspects of treatment delivery (larsson et al. 2014), as a result, a thorough analysis of practitioner and patient reflections, is deemed important. according to research on doctor–patient communication, poor communication contributes to poor health outcomes, poor patient compliance and poor patient commitment to the intervention and treatment regimens (levin 2005; macdonald et al. 2007). despite some research investigating nurses and individuals with asd, research has not focused on interactional styles and breakdowns between adolescents with asd and other health professionals. this study is, therefore, foundational in identifying communication breakdowns between adolescents with asd and their respective healthcare professionals. morrison et al. (2020) found that when comparing td adults and adults with asd, the adults with asd were more awkward, less attractive and socially less warm. in addition, td adults expressed an interest in future interactions with other td adults, whilst adults with asd preferred interactions with adults with asd rather than with td persons. these findings suggest that when adults with asd are matched with other persons with asd, social connection may develop. furthermore, theory of mind (tom), which is the ability to see another’s perspective is important in communication interactions (levey 2019), especially in communication interaction of individuals with asd. research has argued that asd is characterised by tom deficiencies, with empirical evidence to support (baron-cohen 1995). impairment in tom results in a number of challenges in social interaction and communication. in a medical consultation, the healthcare professional must be able to understand their patient’s thinking, as well as communicate, effectively. this is significant because the patient may, on occasion, express the genuine issues that the doctor needs to know about, during the consultation, whether purposefully or accidentally. thus, an inability to gauge a person’s thinking is socially hampering. when conversational partners have different social norms and expectations (as is typically the case for persons with asd); there is a tendency for a ‘disjuncture in reciprocity’, or a lack of empathy, according to milton (2012:883). he called this a ‘double empathy problem’, in which people with asd face challenges in social connection because of bidirectional failures in understanding what is the other person’s thinking. recent data reveal that people with asd (edey et al. 2016) demonstrate thinking patterns that are difficult for their communication partners to perceive. these communication behaviours of individuals with asd will influence their interventions, thereby impacting their quality of life. we argue that it is pivotal to gain awareness of the possible interactional styles and communication breakdowns that exist in sessions between health professionals and adolescents with asd. the findings of this study should make a relevant contribution to the knowledge on asd in the south african context and globally. this knowledge will provide insight into (1) how to navigate communication barriers between individuals with asd and health professionals, (2) emphasising the overlooked voice of adolescents with asd in the context of asd research, (3) developing new strategies for health professionals, which enhance interactions with their patients with asd and those close to them (cesa & mota 2017). the necessity for training of health professionals will also be identified, regarding effective interactional and communication strategies that can be utilised when consulting adolescents with asd. this study, thus, provides an analysis of communication and interactional styles during consultations, as reported by healthcare professionals and adolescents with asd. main aim of study this study aimed to determine the interactional styles and communication strategies used by adolescents with asd and their respective health professionals in various contexts in order to develop management strategies when providing future training to related health professionals. objectives of the study to determine the interactional styles and communication breakdowns of adolescents with asd in general life, as stated by the adolescents (and their parents). to establish the interactional styles and communication breakdowns of adolescents with asd when communicating with their respective health professionals. to determine the interactional styles and communication breakdowns experienced by health professionals when communicating with adolescent clients with asd. research question what are the interactional styles and communication strategies used by adolescents with asd and their respective health professionals? research paradigm the interpretive paradigm was selected for this study, as the primary goal was to interpret the subjective understanding of the participants and to describe the participants’ real-life experiences without imposing a theoretical standpoint. thanh and thanh (2015) indicated that health professionals attempt to assign meaning to their experience of interacting with an adolescent with asd based on their personal beliefs and understandings. the interpretive paradigm was, therefore, selected as appropriate to avoid such researcher bias. research design a qualitative, multiple-case study research design was implemented with four adolescents on the autism spectrum and the health professional that they currently see or have seen within the past 6 months. the multiple-case study design provides the reader with a vivid experience, as opposed to other stringent analytical research methods (zach 2006). in addition, qualitative research offers a more detailed exploration of the topic (creswell & creswell 2012), as there are limited research studies regarding adolescents with asd and their interactions with health professionals. triangulation was also utilised in this study to capture diverse dimensions of the same phenomena and to foster a widespread understanding of these phenomena (carter et al. 2014). the use of multiple data sources fosters a wider understanding of the research subject and increases the confidence in results obtained. researcher reflexivity the researcher practised reflexivity. her observations, thoughts and interpretations were observed in a journal after each interview before the data were analysed. patnaik (2013) stated that reflexivity keeps biases, attitudes, values and views of the world in check, thereby reducing potential influence in the analysis of data. context the research study was conducted at two schools. school a provides individuals on the autism spectrum, with a safe environment for learning, whilst being cognisant of their distinctive breakdowns; assisting them to gain a specific level of independence and to develop essential life skills. school b is an inclusive and encouraging environment that provides support for remedial and special needs students. within school b, there is a team of support staff, professional educators and therapists who work in a holistic manner to provide differentiated learning opportunities, suitable for their students. both schools include adolescents on the autism spectrum, which is the target population for this research study. the students saw their health professionals, privately and on site in school b. data collection methods semi-structured, open-ended interviews were conducted with the health professionals at the school (adolescents 1 and 4) and at their respective practices (adolescents 2 and 3). the researcher also attempted to interview the health professionals before the adolescents themselves; however, this was not always possible. interviewing the health professionals before the adolescents would have allowed the researcher to gain more information on the adolescents, as well as how they communicate with the health professional and what breakdowns are experienced in the interactions. the adolescents with asd were interviewed at their respective schools. however, because of their social interaction and communication challenges, certain adjustments and support systems often needed to be implemented when conducting the interviews with some of the adolescents. the adaptations included rephrasing or simplifying of specific questions, asking close-ended questions and using an adapted version of talking mats (a visual tool where picture symbols related to the topic of discussion are placed on a mat) to supplement their responses (murphy et al. 2010). the researcher adapted the communication style and used questions that were concrete as opposed to abstract, to facilitate ease of processing for individuals with asd. open-ended questions were used when the participants were able to cope with them. credibility the following strategies were incorporated to increase credibility, trustworthiness and rigour of the findings (noble & smith 2015): accounting for personal biases, which could have impacted the findings, careful record keeping, signifying a clear decision path, and guaranteeing that interpretations of data are both reliable and transparent and inclusion of thick and rich verbatim explanations of participants’ accounts, to support results. description of instruments the response format for this study was face-to-face interviews, as this allowed the interviewer to pose questions to the participants and encourage open discussion, whilst providing prompts where necessary (mcmillan & schumacher 2010). each of the interviews first included questions to attain each participant’s demographic information. some of the topics of discussion that were used with adolescents and the health professionals are included here. interview of adolescents feelings towards their respective health professional, attending therapy sessions or consultations, and the activities in therapy, as well as communication and interaction with health professionals. perceived breakdowns in communicating or interacting with health professionals. whether or not the health professional communicates effectively with the adolescent with asd. the duration of the interviews with the adolescents with asd varied and depended on their attention, focus and motivation. the interviews were also audio recorded, with the permission of all participants involved. interview of health professionals describe the interactional style experienced with the adolescent during therapy. describe your communication with him or her. describe the challenges that you experience when communicating or interacting with this adolescent. how do you manage or overcome these challenges? participants the demographics of the participants are presented in table 1. table 1: demographics of the participants. data analysis according to braun and clarke (2013), six phases of thematic analyses were implemented when analysing the data obtained from the various interviews within each case and across the cases. the broad themes reflected the following: interactional styles, management of interactional breakdowns and enhancement of effective strategies (see table 2). the results are presented in line with the objectives of the study. table 2: a cross-analysis review of emerging themes in adolescents with autism spectrum disorder’s communication. ethical considerations ethical clearance to conduct this study was obtained from the school of human & community development sppa human research ethics internal committee (reference number: no-sta_2018_02) before the study commenced. in adherence, all ethical principles were maintained. special considerations were made for the adolescents with asd as they form part of a vulnerable population, hence, assent and participation information forms were adapted, accordingly. results objective 1: to determine the interactional styles and communication breakdown of adolescents with autism spectrum disorder in general life, as stated by the adolescents (and their parents) interactional styles and challenges in therapy sessions or consultations were a prevalent feature in all four cases, with some noteworthy similarities and contrasts identified. all four adolescent participants stated that they employed the approach of talking when dealing with their health professional, despite their diverse feelings and difficulties with communicating. they appeared to use primarily verbal communication during sessions. when the researcher asked p3 the question: ‘do you like talking to the therapist? if so, why, or why not?’ he responded: ‘i like talking.’ there were both similarities and variances in the attitudes of health professionals and parents regarding therapy sessions or consultations. according to their health professionals, p1 and p2 did utilise gestures on occasions. furthermore, p2 and p4 appeared to articulate single word utterances. three of the adolescents, notably p2, p3 and p4, appeared to mumble, rendering their speech inaudible at times. in terms of interactional styles, all the health professionals interacted with their adolescent clients primarily through verbal communication. several parallels were discovered when examining the interactional issues encountered by these adolescents. the adolescents’ vocabulary was limited, according to the neuro-physiotherapist, and this was also mentioned by p2’s mother and ot. furthermore, three adolescents displayed poor eye contact, but p1 reacted differently. initially, p1 struggled with eye contact but as he became more familiar and comfortable in engaging with his therapist, this improved noticeably. it was also discovered that social functioning and related worry or stress were emphasised for the two teenagers who had been diagnosed with asperger’s syndrome (p3 and p4). as a result, p3’s mother observed that her son can verbalise, understand and articulate sentences together. she stated: ‘he has problems socially, as well as severe anxiety, which is his greatest hurdle, and this frequently functions as a barrier to interactions’. similarly, when p4’s mother was asked about communication challenges her son experiences socially, she stated that: ‘…if he needs to be in a social environment, it makes him very uncomfortable and very stressed’. the psychiatrist confirmed p4’s mother’s claim by noting that this adolescent lacks the social value of conversing and engaging with others. within treatment sessions and consultations with these adolescents, different interaction styles and challenges are evident, and these variations are addressed in the within case analysis. this theme was present across all four cases in the across-case analyses and similarities exist. in conclusion, this shows that parents and healthcare professionals are aware of the adolescents’ unique styles of interactions and are able to respond appropriately. however, the adolescents with asd, seem to prefer using spoken language despite their challenges with communication. the insistence on spoken language maybe an outcome of having prolonged speech-language intervention. objective 2: to determine the interactional styles and communication breakdown of adolescents with autism spectrum disorder when communicating with their respective health professionals interactional challenges were experienced by the adolescents with asd when communicating with their health professionals. p1, p3 and p4 utilised techniques to deal with interactional challenges, but p2 did not. when p1’s neuro-physiotherapist did not understand him, he kept talking until she did understand. p3 and p4’s strategy for dealing with their inability to understand what their health professional said was to request the health professional to repeat themselves. the strategy of requesting repetition could be a form of asking for clarification, as well as providing time for processing of information. requesting clarification is an expected strategy use by p3 and p4, as they were on the higher cognitive level of the spectrum. similarities and variances in how the health professionals handled interactional challenges that arose during therapy sessions or consultations were observed. the neuro-physiotherapist, ot and psychologist used repetition as a tactic, when requesting information from the adolescents. the neuro-physiotherapist kept asking the youngster to repeat what he had said, and then she repeated what he had said to make sure that she had heard him correctly. the ot emphasised that she needed to repeat herself frequently, because of the adolescent’s poor attentiveness. furthermore, the psychologist asked the adolescent to repeat himself, as the adolescent’s speech was mumbled, with little clarity. in addition, the neuro-physiotherapist, ot and psychologist used a similar strategy of shortening phrases and in general, speaking more simply. for example: the ot reported: ‘they need to have stuff repeated constantly, else basic communication skills slip away’. the neuro-physiotherapist: ‘when the adolescent said something ‘i’d say to him’, ‘okay, is this what you said to me?’ and then repeat it back to him and then he would either correct it or say no’. although the neuro-physiotherapist used basic terms, she also had to recommend that the adolescent speak more simply because he wanted to use more advanced language and complex words, which made it difficult to hear and understand him because he was not always able to explain clearly. it can be concluded that adolescents have some communication repair strategies, such as repetition, however, these strategies are not always successful when there is a breakdown. the communication partners in this study were able to provide support in repair strategies such as asking the adolescents to repeat their messages. objective 3: to determine the interactional styles and communication breakdown experienced by health professionals when communicating with adolescent clients with autism spectrum disorder the ot and psychologist both acknowledged their use of simple sentences regarding this style. furthermore, these two health professionals expressed concerns regarding the sensory overload of verbal communication on youngsters, resulting in the use of less speech at times. according to the father of p1, the health professional frequently explains what will happen in the session and why they are doing various activities, which is part of what the ot also does. in terms of explanations, the health professionals, according to the parents of p1 and p4, provide good explanations to the adolescents in a way that they comprehend. furthermore, both the health professionals and parents of p2 and p3 explained that these teenagers had trouble grasping and applying complex concepts. p2’s ot stated that his poor concentration had a detrimental impact on his relationships in treatment, which aligns with what p4’s mother stated: ‘he has a tremendous problem with focus’. the psychiatrist summed up the different approaches by stating: ‘… they don’t always present the same in everybody but i think that is key to understand that and then to understand that individual because everybody is different and i think you can’t have a blanket way of treating everybody with autism’. in conclusion, the healthcare professionals (hcp) provided repair strategies that aided the adolescents’ comprehension of instructions or messages. use of simplified instructions aided receptive language of the adolescents. discussion one of the main features of asd is impaired verbal and non-verbal communicative capabilities that hinder interactions at home, school, social and therapy environments (mody & belliveau 2013). therefore, the interactional styles and common interactional difficulties demonstrated during sessions between adolescents with asd and their respective health professionals, impact the success of their treatment. the adolescents with asd do not always improve as expected in terms of health, rapport between the adolescent and health professional, as well as the feelings and emotions brought on by these interactional difficulties. this study’s findings raise several challenges concerning future knowledge of hcp interactional styles and applied research efforts with adolescents with asd. firstly, the findings imply that investigations of hcp interactional techniques with adolescents with asd should be planned to take into consideration the effects of the co-verbal interactant’s conduct. the findings of research comparing the communication breakdowns of adolescent or children with asd with different conversational partners are frequently reported and interpreted in terms of fundamental differences such as age, gender and iq score in either the children or their partners. however, the teenagers’ interpersonal and communication problems, as well as hcp communication challenges, are rarely considered. the findings of this study imply that the interactional styles and communication breakdowns of adolescents with asd may be a crucial component influencing the outcomes of such research. the adolescents with asd who have complex communication difficulties including initiating topics, asking questions and producing topical comments when communicating with their healthcare providers were able to demonstrate reasonable competence in these areas when their healthcarers understood their difficulties. secondly, the findings of this research study imply that to effectively understand the communicative breakdowns and interactional styles throughout therapy sessions, the adolescents need to be allowed to reflect and have insights into their communication challenges. according to larsson et al. (2014), an adolescent’s perspective of his or her communication breakdowns is crucial to success in therapy, as this has implications for the type of intervention. such analyses and comparison of communication breakdowns and interactional styles during therapy sessions will aid in reducing the inaccuracies and underestimation of the communication needs of adolescents with asd. analysis of communication is pivotal as it places a value on the practitioner’s ability to comprehend the adolescent and for the adolescent to accept his or her current asd outcomes. health professionals in this study have interacted with their adolescent clients mainly through verbal communication; however, gestures, body language, modelling, physical demonstrations, direct questions and simple guidance were introduced by health professionals as a means of enhancing interactions. thirdly, the findings of this study are significant as the research studies have shown that poor communication is associated with poor health outcomes, poor patient compliance, and low patient commitment to intervention and treatment regimens (levin 2005; macdonald et al. 2007). a supportive professional interaction style in this study seemed to encourage the adolescent to participate and cooperate positively in therapy. in addition, the professionals were able to intuitively understand what their clients were thinking or feeling, which allowed and encouraged spontaneous comments and use of gestures and other augmentative strategies. the adolescents were then able to formulate and produce a relatively understandable utterance. on the contrary, recent data reveal that it is difficult to intuitively understand what people with asd are thinking or feeling (edey et al. 2016). communication breakdowns experienced by health professionals ranged from impaired comprehension when communicating to difficulty maintaining the presence and focus of the adolescents with asd. therefore, analyses of interactional styles are fundamental to developing strategies that would improve communication and rapport between the adolescents with asd and their healthcare professionals. furthermore, effective communication and good rapport will develop confidence in the adolescents with asd. conclusion positive results and significant contribution to knowledge, regarding the interaction styles and communication challenges of adolescents with asd and their respective health professionals, have been established in this study. the key interactional styles used in therapy sessions or consultations by adolescents with asd included verbal communication, with some diversity amongst the various cases. however, these interactive styles remain unchanged in all conditions of their lives. conversely, all health professionals in this study adapted their style for their adolescent clients with asd. health professionals therefore used verbal contact to gain interaction and reduce the social anxiety faced by teenagers. their verbal communication was simplified, more direct and straightforward. it was also clear that there were relationship challenges between health practitioners and adolescents with asd. for some of these teens, especially those diagnosed with asperger’s syndrome, anxiety about social interactions tends to greatly hamper interaction skills. although the interaction breakdowns varied, most adolescents, parents and health professionals used methods to manage these breakdowns. not only did health practitioners change their interaction styles, but there was also an eagerness to learn about and establish techniques that would strengthen the experiences they had with adolescents with asd in a way that would improve the results of therapy sessions and daily life positively. when communicating and engaging with patients with asd, there is a need for more training that will ensure successful consultation, learning and social results that support not only youth but also health professionals, parents and teachers. training sessions for healthcare professionals, parents and professionals from cognate fields are essential for improved communication with adolescents with asd. speech-language therapists could be part of a team in organising these workshops and training programmes. collaboration amongst professionals is important in finding effective solutions to mutually experienced communication challenges. the cognitive behavioural therapy (cbt) approach, which began in the mental health community, is steadily gaining support as a viable treatment method for individuals with asds who have strong verbal communication abilities, as is the case of individuals with asperger’s syndrome (attwood 2012). the cbt provides a concrete method through which social expectations (perceptions, thoughts and emotions) can be discussed and then social-behavioural adaptations, better known as social skills can be defined. other programmes can also be designed and tested that promote effective pragmatic communication skills. in addition, recent studies have called for further research on asd in adolescence and adulthood, as there is a lack of research on autism from teen years to adulthood, especially on knowledge from adolescence to adulthood (sarris 2013). this study answers this call for asd research with adolescence. this research study yielded results that inform knowledge on interaction types and coping methods used by adolescents with asd and their respective health professionals in the south african context. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.a. conceptualised the topic and design, collected the data and wrote the first draft. m.m. and s.m. supervised this research project, contributed from the beginning to the end of the study; including critical input on data analysis, interpretation, revisions and 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library trends 55(1), 4–21. https://doi.org/10.1353/lib.2006.0055 article information authors: lisa visagie1 helene loxton1 wendy k. silverman2 affiliations: 1department of psychology, stellenbosch university, south africa 2yale child study centre, yale university school of medicine, united states of america correspondence to: helene loxton email: hsl@sun.ac.za postal address: private bag x1, matieland, stellenbosch 7602, south africa dates: received: 16 sept. 2014 accepted: 08 apr. 2015 published: 03 july 2015 how to cite this article: visagie, l., loxton, h. & silverman, w.k., 2015, ‘research protocol: development, implementation and evaluation of a cognitive behavioural therapy-based intervention programme for the management of anxiety symptoms in south african children with visual impairments’, african journal of disability 4(1), art. #160, 10 pages. http://dx.doi.org/10.4102/ajod.v4i1.160 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. research protocol: development, implementation and evaluation of a cognitive behavioural therapy-based intervention programme for the management of anxiety symptoms in south african children with visual impairments in this original research... open access • abstract • introduction • method    • participants    • inclusion criteria    • randomisation • programme intervention    • immediate intervention group (iig)    • delayed intervention group (dig)    • group leader (trainer) • programme evaluation    • between group effects    • within group effects • data collection    • participant outcomes    • teacher outcomes    • qualitative outcomes    • statistical analyses • discussion    • strengths and limitations    • implications for practice • conclusion • acknowledgements    • competing interests    • authors' contributions • references abstract top ↑ background: childhood anxiety presents a serious mental health problem, and it is one of the most common forms of psychological distress reported by youth worldwide. the prevalence of anxiety symptoms amongst south african youth is reported to be significantly higher than in other parts of the world. these high prevalence rates become even more significant when viewed in terms of children with visual impairments, as it is suggested that children with physical disabilities may be more prone, than their non-disabled peers, for the development of psychological difficulties. objectives: the main aim of this study is to develop, implement and evaluate a specifically tailored anxiety intervention programme for use with south african children with visual impairments. method: a specifically tailored cognitive-behavioural therapy-based anxiety intervention, for 9–13 year old south african children with visual impairments, will be evaluated in two special schools. the study will employ a randomised wait-list control group design with prepostand follow-up intervention measures, with two groups each receiving a 10 session anxiety intervention programme. the main outcome measure relates to the participants’ symptoms of anxiety as indicated on the revised child anxiety and depression scale. conclusion: if the anxiety intervention programme is found to be effective in reducing symptoms of anxiety, this universal intervention will lay down the foundation upon which future contextually sensitive (south african) anxiety intervention programmes can be built. introduction top ↑ a substantial body of literature indicating that childhood anxiety presents a serious mental health problem has now been amassed (barrett & turner 2001). firstly, the literature indicates that anxiety is one of the most common forms of psychological distress reported by youth (barrett & sonderegger 2005; dadds et al. 1997). a recent meta analytic prevalence study indicated that an average of 12.3% of school-aged children (ages 6–12) experience significant symptoms of anxiety (e.g., costello et al. 2011, 2003; heiervang et al. 2007; mcardle, prosser & kolvin 2004; mullick & goodman 2005; petersen et al. 2006). secondly, although experiencing transient fears and anxieties is deemed to be a normal part of development for most children; for some these experiences may intensify and persist over time, causing interferences in daily functioning (barrett, lock & farrell 2005; silverman 2011). thirdly, the experience of childhood anxiety has been associated with a number of somatic difficulties such as fatigue, restlessness, irritability, and sleep disturbances (beidel, christ & long 1991; pina & silverman 2004) and psychosocial impairments such as problems with peer relations, low self-esteem, immaturity, impaired academic functioning, and concentration problems (cooley, boyd & gratos 2004; farrell & barrett 2007; messer & beidel 1994; motoca, williams & silverman 2012). fourthly, if left untreated, severe symptoms of anxiety can take on a chronic and unremitting course (barrett & turner 2004; cole et al. 1998; weems & silverman 2013), and many adults who are diagnosed with an anxiety disorder can trace the onset of symptoms back to their childhood (rapee & barlow 1993). given this suggested relationship between childhood anxiety and adult psychopathology, it is essential for symptoms of anxiety to be addressed as early as possible (cobham 2003), and promising in this regard is the increased evidence pointing to the amenability of childhood anxiety symptoms to brief psychosocial interventions (lowry-webster, barrett & dadds 2001; silverman, pina & viswesvaran 2008). yet, despite these promising results, research indicates that less than 20% of children who require treatment for anxiety will receive clinical intervention (day & roberts 1991; olfsen et al. 2003), and of those who do, a large number will terminate prematurely (kazden 1996; pina et al. 2003), fail to respond (donovan & spence 2000; rey, marin & silverman 2011) or, despite treatment, continue to experience recurrent difficulties (last et al. 1996). in addition, long waiting lists, high costs, high instances of family drop outs, and no show rates also influence access to treatment (weist 1999). as a result, health policies across the world increasingly promote prevention as the most important direction in which mental health services should move (barrett & turner 2004; lowry-webster, barrett & lock 2003). prevention offers a positive adjunct to treatment, as prevention programmes can reach a large number of individuals over a shorter period of time; avoid high levels of personal distress for children and their families; and offer a cost-effective and efficient means of intervention prior to the onset of psychopathology (farrell & barrett 2007). the south african prevalence rates of anxiety symptoms are even higher than the above-mentioned international estimates suggest, with muris and his colleagues (muris et al. 2002) reporting prevalence rates of anxiety symptomology between 22% – 25.6% in children aged 7 to 13 years. these findings were confirmed in subsequent south african studies (burkhardt, loxton & muris 2003; muris et al. 2006). mostert and loxton (2008) noted these high prevalence rates and identified the need for a suitable anxiety intervention programme which could be implemented within the south african context. previous international studies and also the world health organization (who 2004) had identified barrett’s (2004) cognitive behavioural therapy (cbt) based friends programme to be an efficacious intervention for the reduction of anxiety symptoms in youth (see briesch, hagermoser sanetti & briesch [2010] for an overview). as a result, mostert and loxton (2008) conducted a pilot study to explore the effectiveness and suitability of the friends programme for use with south african children. this study reported promising results and its outcomes were in line with the government's white paper on the transformation of the south african health care system, as the study promoted prevention as an important strategy for the enhancement of the mental and physical health of the nation (doh 1997). the above-mentioned anxiety factors, their high prevalence rates, and identified need for a suitable intervention programme, become even more significant when viewed in terms of the population of children with visual impairments, who are often marginalised, as previous research involving children with physical disabilities suggests that they are at increased risk of developing psychological difficulties when compared to their non-disabled peers (see gullone [1996] for an overview). despite this identified risk, this population has been neglected in previous fear and anxiety research. the last international study to touch on this topic was conducted by weimer and kratochwill more than two decades ago (1991) in wisconsin (usa). identifying this gap in the literature, the authors (visagie et al. 2013) conducted an exploratory (baseline) study with south african children with visual impairments. results indicated that the overall fear profiles of children with visual impairments, and children with normal sight, did not differ significantly (visagie et al. 2013). this similarity indicates that the two populations (children with and children without visual impairments) have similar needs. as the need for a suitable anxiety intervention programme was highlighted in the general south african population (children without visual impairments) (burkhardt et al. 2003; mostert & loxton 2008; muris et al. 2006), the same can be said for this specific group. children with visual impairments also require a suitable and accessible anxiety intervention programme (loxton, visagie & ollendick 2012; visagie et al. 2013). on closer evaluation of the study by visagie et al. (2013), the need for a suitable anxiety intervention programme was noted to be especially prominent for a specific sub-group of children with visual impairments (i.e. children with severe visual impairment). in their 2012 paper loxton, visagie and ollendick (2012) highlighted significant differences in fearfulness between three groups of visually impaired children who had varying levels of sight (i.e. partially sighted, severely visually impaired and totally blind). these levels of vision can be viewed on a sliding scale (i.e. children who are partially sighted have the most vision; children with severe visual impairment have less vision, but they are not totally blind; and the totally blind children have no level of measureable vision). children with severe visual impairment (i.e. children who have a degree of light perception and movement detection, but who cannot function optimally without assistance and cannot read print material (who 2000), were more fearful than the partially sighted and totally blind children. this group reported the highest number (m = 42.09, sd = 17.84) and also level (m = 171.63, sd = 28.60) of fear. this reported number of fears is almost double the number reported by the children with normal sight (m = 24.66, sd = 13.12). the level of fear in children with normal sight was also lower (m = 146.15, sd = 25.33). thus, children with severe visual impairment can be identified as a high-risk sub-group within the broader population of children with visual impairments, for the possible development of later anxiety disorders. a possible suggestion for this sub-group's greater instance of fearfulness could relate to the fact that the visual difficulties, of this group of children, are the most differentiated and difficult to understand. the totally blind children can see nothing; therefore, they need assistance in most unfamiliar situations. on the other hand, partially sighted children usually have enough sight to help themselves and move around independently, and the children with severe visual impairment are in the middle, this group's visual difficulties may be the most complex and most disabling. although children with severe visual impairments have a degree of measurable vision, they may find it difficult to function independently in an unfamiliar environment. therefore, the uncertainty when they are faced with new situations and possibilities may contribute directly to their higher fear reactivity (bensch 2010; loxton et al. 2012; sacks et al. 2006; visagie et al. 2013). therefore, it is essential for these children to have access to suitable intervention programmes focused on the development of appropriate coping strategies and problem solving skills to enable them to deal competently with anxiety symptoms when they arise. although mostert and loxton (2008) obtained favourable outcomes with the friends programme with a group of south african children, their study did incur some limitations. it was noted that the friends acronym (f for feeling worried?, r for relax and feel good, i for inner thoughts, e for explore plans of action, n for nice work, reward yourself!, d for do not forget to practise, and lastly s for stay cool and calm! (barrett 2004, cited in mostert 2007), which is aimed to aid children in remembering the coping steps to take when faced with a problem, was difficult for some south african children to remember and problematic to translate into afrikaans (mostert & loxton 2008). furthermore, mostert and loxton (2008) concluded that although the friends programme has been used successfully in other countries, south african socio-contextual issues (the high incidence of crime and poverty) should not be ignored – research should in addition be focused on constructing a socially relevant anxiety intervention programme that considers the impact of these factors (mostert & loxton 2008). in addition, the friends programme is not suitable for use with children with visual impairments, as its content (i.e. cartoons, colouring-in pictures, workbook and visual-based activities) is not very accessible to this specific population. to summarise, the following six factors motivated the proposed study: the high prevalence rates of anxiety symptomology in the general population (especially in south africa) the suggestion that visually impaired children are at increased risk for the development of anxiety disorders when compared to their sighted counterparts the lack of anxiety research involving children with visual impairments the unique south african socio-cultural context the benefits associated with prevention and early intervention with regards to childhood anxiety the inaccessibility and appropriateness of existing anxiety intervention programmes. as a result, the proposed study will aim to develop, implement and evaluate an anxiety prevention or early intervention programme (from here on referred to as an anxiety intervention programme), which is specifically tailored to meet the needs of children with visual impairments within the south african context. as far as the researchers can ascertain, no studies focussed on anxiety prevention and early intervention programmes, for children with visual impairments, have been conducted previously. thus, the primary aim of the study is to develop, implement and evaluate a specifically tailored anxiety intervention programme for use with south african children with visual impairments. this aim will unfold in the following three steps: develop an accessible anxiety intervention programme which can be used with south african children with visual impairments (programme development phase). implement this anxiety intervention programme successfully (programme implementation phase). evaluate the effectiveness of this anxiety intervention programme in maintaining emotional health (i.e. preventing an increase in symptoms of anxiety as measured on the revised child anxiety and depression scale [rcads] [chorpita et al. 2000] [programme evaluation phase]). specifically, it is expected that firstly, there will be a significant reduction in anxiety scores on the rcads from time 1 (t1) to time 2 (t2) for the immediate intervention group (iig), and secondly, there will be a significant reduction in anxiety scores on the rcads from t2 to t3 for the delayed intervention group (dig). method top ↑ a specifically tailored cbt-based anxiety intervention for south african children with visual impairments will be evaluated in two special schools that cater for children with visual impairments. this study is set up as a randomised wait-list control group design with pre-, post-and follow-up intervention measures, with 60 participants randomly assigned to an iig (n = 30) and a dig (n = 30). before implementation of the programme 10 participants from each group will be randomly selected to take part in a focus group. the focus group will be aimed at obtaining the participants’ personal inputs and to pilot certain sections of the programme before final implementation. both of the programme's groups will receive the 10 session anxiety intervention programme. the participants will complete baseline (t1), post intervention (t2 for iig and t3 for dig) and 3 month (t3 for iig and t4 for dig) or 6 month (t4 only for iig) follow-up assessments. the research design can be represented as follows: r  iig t1   x  iig t2     iig t3  iig t4 r  dig t1     dig t2  x  dig t3   dig t4 r = randomisation x = intervention participants it is envisaged that the final sample will consist of approximately 60 children; 30 children in the iig and 30 children in the dig who attend grades 4–7 (aged 9–13 years) at two schools (school 1 and school 2), for children with visual impairments in the western cape province of south africa. letters explaining the study will be sent to the two identified schools, and the necessary written consent for participation will be requested from the school principals and school governing bodies. parents or guardians of the identified participants (children attending grades 4–7) will be provided with an information letter explaining the study and a consent form giving their child permission to take part. identified participants will also be provided with information about the study and they will be required to give written assent before they are delivered the programme. thus, dual parent-child consent and assent will be required for inclusion. this study received approval (hs888/2013) from the research ethics committee: human research (humaniora) at the stellenbosch university (institutional review board number: irb0005239), and the western cape education department in south africa (reference: 20130507–10635). inclusion criteria the criterion for inclusion in the study will be one of universal prevention where children will be included in the programme regardless of their anxiety status. universal prevention is a positive approach to social-emotional learning as it aims to build strengths in all children through the enhancement of known skills and protective factors (farrell & barrett 2007). however, a distinction about the programme description can be made. based on each participants t-score on the rcads (chorpita et al. 2000) at t1, the programme can be described as either an early intervention (t-score above 65) or prevention programme (absence of significant symptoms of anxiety). furthermore, participants should be aged between 9 and 13 (attend grades 4–7), and be able to read and write. the reason for this requirement is that the measuring instruments are self-report surveys and participants must read the questions and complete these themselves. lastly, with the exception of visual impairment, participants included in the study should have no other disability. randomisation randomisation will be applied within schools with an immediate intervention and delayed intervention group within each school. participants will be assigned to either the iig or the dig at their respective schools. the iigs from school 1 and school 2 will be combined to form one large iig, and the digs from school 1 and school 2 will be combined to form one large dig. programme intervention top ↑ a specifically tailored, group-based, anxiety intervention programme for children with visual impairments will be implemented as a universal intervention. the anxiety intervention programme, which is based on a cbt model, was developed over a period of six months. cbt-based interventions employ both cognitive (e.g. positive self-talk) and behavioural (e.g. relaxation) techniques to modify cognitions, behaviour and affect (kendall 1993; nevid, rathus & green 2000; silverman & kurtines 1996). thus, cbt-based interventions aim to teach children to identify maladaptive thoughts and to replace these thoughts with more positive ones (mash & wolf 2005). in addition, one of the greatest benefits of cbt is its longevity, as cbt is focussed on equipping people with a set of coping skills that can be used both now and in the future. furthermore, cbt-based interventions are usually shorter-term interventions, making them more cost-effective and appealing (farrell & barrett 2007; ollendick & king 1998; silverman et al. 2008). for these reasons, cbt was the intervention modality of choice for the study. the eight key concepts of cbt as described by barrett and turner (2001) are central to the anxiety intervention programme's theoretical base, and include: recognition of the link between thoughts and feelings identifying feelings relaxation strategies cognitive restructuring attention training problem-solving self-reward relapse prevention. the programme's core theme relates to the enhancement and development of skills or competencies which can be employed when confronted with difficult situations, whether they relate to fears or worries, daily hassles (e.g. struggling with a difficult homework assignment), or stressful and aversive life events (e.g. moving to a different school or facing family conflict) (barrett & turner 2001). in addition to incorporating the eight key concepts of cbt, the anxiety intervention programme lent and built on ideas and concepts adapted from already existing cbt-based approaches and programmes, such as: kendall's coping cat programme (kendall 1990) barrett's coping koala programme (barrett 1995) silverman and kurtine's transfer of control approach (silverman & kurtines 1996) stallard's think good-feel good programme (stallard 2002) barrett's friends for life programme (barrett 2004) rapee's cool kids® programme (rapee et al. 2006). the challenge in this adaptation was not only to translate the eight key concepts of cbt into a child-friendly and age-appropriate programme, aimed at combating anxiety symptoms, but also to present the programme in a format that is accessible and appealing to children with visual impairments. as an alternative to reading and colouring in pictures (which is the norm in most of the programmes to date) the adapted programme makes use of clay (and other tactile media), toys, role-plays, games, songs, narratives and other creative techniques as alternative forms of engagement. as the friends acronym is not suitable for use in the proposed study the title for the adapted intervention programme is the p& m programme (pam = positive & motivating, and in afrikaans positief & motiverend). activities in the p& m programme are aimed at teaching children with visual impairments practical skills, such as: identifying feelings; relaxation skills; identifying unhelpful and helpful thoughts; and how to deal with daily problems and challenges (stallard et al. 2007). immediate intervention group (iig) all assenting children in the iig will receive a 10–session cbt-based, group programme, each session will last approximately 60 minutes. the sessions will take place twice a week for five weeks. groups consist of 8–10 participants. the programme will be delivered at schools during a time negotiated with the school. the programme will start with activities that promote group cohesion and teamwork (session 1). in sessions 2 and 3 psycho-education, regarding emotions and thoughts, is given, and in session 4 bodily reactions to anxiety are addressed and relaxation exercises are introduced. group participants are encouraged to practice these relaxation exercises throughout the duration of the programme. the next step (session 5) relates to recognising inner thoughts and the promotion of positive thinking. session 6 introduces the concept of cognitive restructuring and introduces participants to problem solving skills. self-evaluation and reinforcement is introduced in session 7. sessions 8 and 9 allow for group participants to repeat and practice the new skills they have learnt, and session 10 covers relapse prevention and there is a party to celebrate the completion of the programme. at the start of the programme, parents or guardians and teachers will also be invited to attend an additional psycho-educational information session. this information session will provide an overview of the anxiety intervention programme, discuss the rationale underlying cbt-based programmes and explain the skills that children will be taught. delayed intervention group (dig) participants in the dig will be delivered the same intervention programme straight after the programme has been delivered to participants in the immediate intervention group, and they will also be asked to complete three questionnaires on four occasions, together with the children in the iig. group leader (trainer) the programme will be delivered by the first author and a research facilitator (a post-graduate student in psychology) in either english or afrikaans, depending on the children's language of schooling. the first author is a registered counselling psychologist with ample experience and knowledge relating to developmental psychology and cbt. the group leader will be blind to all assessment measures. the reason the first author herself will conduct the intervention is that there are no other qualified psychologists available who are visually impaired, and who are attuned to the social and cultural context of the participants. programme evaluation top ↑ as mentioned above, all assenting children from school 1 and school 2 will randomly be assigned to 1 of 2 groups at their respective school (an iig or a dig). the iig groups from school 1 and school 2 will be combined to form one large iig, whilst the dig groups from school 1 and school 2 will be combined to form one large dig. the evaluation phase will comprise both a quantitative and qualitative component (more information about the qualitative component is given below). for the quantitative evaluation, all assenting children in the iig and dig (approximately 60 participants) will be administered a short biographical questionnaire (only at t1) and three self-report questionnaires at pre (t1), post (t2), and follow-up (t3 and t4) intervention. children in the iig will receive the intervention programme before the children in the dig. it is envisaged that the programme will be delivered to the two groups (the iig and dig) of children according to the following outline: initial assessment of all children, iig and dig (t1) children in the iig receive the anxiety intervention programme (5 weeks) re-assessment of all children, iig and dig (t2) children in the dig receive the anxiety intervention programme (5 weeks) re-assessment of all children, iig and dig (t3) final assessment of all children, iig and dig (t4 – it will be 6 months after the children in the iig received the intervention and 3 months after the children in the dig received the intervention). resulting from time constraints, where all assessments should be conducted within one academic year, there will be no 6 month follow-up for the dig, and no wait period for the iig. it will be possible to measure: the stability of the measures when untreated over time (the dig will act as a wait-list control group using t1 and t2 comparisons) the impact of the anxiety intervention programme immediately after completion (using immediate pre and post-data from both groups – iig [t1 and t2]; and dig [t2 and t3]) the maintenance of the effects of the anxiety intervention programme over time following intervention (iig using t2, t3 [3 month] and t4 [6 month] comparisons, and dig using t3 and t4 [3 month] comparisons) the following six hypotheses are to be tested during the evaluation phase of the proposed study (four hypotheses pertain to between group effects and two hypotheses pertain to within group effects). between group effects firstly, it is hypothesised that there will be no significant differences between the scores obtained by the iig and dig on the rcads at t1. secondly, anxiety scores obtained by the iig on the rcads (post intervention) will be significantly lower than the anxiety scores obtained by the dig on the rcads at t2. thirdly, there will be no significant differences in the anxiety scores of the iig at t2 and dig on the rcads at t3. fourthly, results obtained on the rcads at post-intervention (t3) will be retained at the three (dig) and six month (iig) follow-ups (t4). within group effects within the iig there will be a significant reduction in anxiety scores on the rcads from t1 to t2. within the dig there will be a significant reduction in anxiety scores on the rcads from t2 to t3. for the qualitative process evaluation of the programme, all ten intervention sessions will be video recorded, and the verbal content of the recordings will be transcribed verbatim. the transcriptions will be analysed to identify recurring themes (thematic content analyses). after completion of the ten sessions participants will also be asked to complete a series of short questions compiled by the researcher. in addition, the researcher and the research assistant (observer) will also keep a detailed record (in the form of process notes) of all sessions. the intervention programme will be completely manualised and a quantifiable measure, to measure adherence to the treatment protocol, will be developed and implemented. these qualitative components will be included in the research to ensure fidelity and to provide as many pointers as possible to aid in the understanding of an under-researched problem, namely anxiety experienced by children with visual impairments. hartley and muhit (2003) state that the inclusion of a qualitative component in research can help bridge the gap between scientific study and clinical practice, and may assist in gaining a better understanding of the phenomena under investigation. they further argue that qualitative methodology is needed to collect cultural and disability specific data which may not be easily obtained through quantitative methods, as the low prevalence rates of some disabilities make it very difficult to draw statistically significant conclusions from quantitative data (philander 2007). hartley and muhit (2003:103) further emphasise that qualitative sources of data provide an opportunity not only to listen, but also to include the voices of vulnerable populations in programme planning. they stated this as follows: ‘it [qualitative data] educates quantitative researchers about the people and their perceptions, beliefs and practices’. data collection top ↑ questionnaires will be made available in four different input modes relating to the individual participant's specific needs and degree of visual impairment. in some cases the original print versions of the questionnaires will be provided and read by means of a magnifying aid, questionnaires will also be put in a large print format (a3), and for those participants who cannot read print, the questionnaires will be made available in braille or in an audio format. the modes of response will also be adapted to suit the individual participant's communication needs. participants who are able to read the standard or large print copies of the questionnaires can indicate their answers in the spaces provided, and for the participants using braille or recorded versions of the questionnaires, specially prepared answer sheets will be made available. in previous studies (king, gullone & stafford 1990; matson et al. 1986; ollendick, matson & helsel 1985; wilhelm 1989) where the fears and anxieties of visually impaired children were assessed using self-report measures (e.g. the revised fear survey schedule for children, fssc-r; the south african fear survey schedule for children, fssc-sa; and the revised children's manifest anxiety scale, rcmas) similar adaptations were made with great success. children will complete the questionnaires at their school with the help of the research facilitators. guidelines put forth by visagie and loxton (2014) about the child-friendly assessment and the accomodations needed for children with visual impairments to complete self-report surveys, will be implemented and followed throughout the process of data collection. the questionnaires will be administered to all participants (iig and dig) on four occasions: immediately before delivering the anxiety intervention programme to the iig (t1) (baseline) immediately after delivering the anxiety intervention programme to the iig, and before delivering the anxiety intervention programme to the dig (t2) immediately after delivering the anxiety intervention programme to the dig (t3) at follow-up, six months after delivering the programme to the iig, and three months after delivering the programme to the dig (t4) participant outcomes the primary outcome measure in the study relates to changes in levels of symptoms of anxiety and depression on the revised child anxiety and depression scale (rcads) (chorpita et al. 2000). the 30 items of the rcads assess symptoms across six domains of anxiety and depression in children (aged 6–18), including: social phobia separation anxiety obsessive compulsive disorder panic disorder generalised anxiety disorder major depressive disorder. items are rated on a four-point likert scale. psychometric properties of the rcads are good; the six rcads scales were found to have adequate internal consistency (with all alphas in the .70 and .80 range) and test-retest stability (with one-week test-retest correlation coefficients ranging from .65 to .80) (chorpita et al. 2000; muris, meesters & schouten 2002). the rcads is freely available on the internet for download, and permission to translate the questionnaire into afrikaans was obtained from the authors. translations were written by a registered clinical psychologist who is fluent in both english and afrikaans in accordance with the brislin (1980) back-translation method. secondary outcome measures relate to children's worry and self-efficacy measured by the penn state worry questionnaire for children (pswq-c) (chorpita et al. 1997) and self-efficacy questionnaire for children (seq-c) (muris 2001) respectively. the pswq-c (chorpita et al. 1997) is an 11–item questionnaire which assesses the tendency of children (aged 7–17) to engage in excessive generalised and uncontrolled worry. respondents are asked how often each item applies to them by indicating answer options on a four-point likert scale. chorpita et al. (1997) found the pswq-c to have favourable psychometric properties, reporting good internal consistency (a = .88) and test-retest reliability (r = .92) (over a one-week interval). the pswq-c is freely available on the internet for download, and permission was obtained from the authors to translate the questionnaire into afrikaans. once again translations were written in accordance with the brislin (1980) back-translation method. muris’s (2001) seq-c is a 24 item self-report scale. the seq-c measures children's self-efficacy across three domains including: social, academic and emotional self-efficacy. respondents are required to rate each of the 24 items on a five-point likert scale. the reliability of the scale ranges from .88 for total self-efficacy and between .85 and .88 for the three sub-scales (muris 2001). the seq-c has been translated into afrikaans and has been used successfully in previous studies (le roux 2013; muris 2001). teacher outcomes an additional outcome relates to emotional and behavioural difficulties experienced by group participants. the strengths and difficulties questionnaire (sdq) is a widely used, brief behavioural screening questionnaire aimed at detecting behavioural and emotional difficulties in youth (aged 3–16 years) (mostert 2007). the sdq consists of 25 items which can be divided into five sub-scales of five items each. four sub-scales comprise the most important domains of child psychopathology, including: emotional symptoms conduct problems hyperactivity and inattention peer relationship problems. scores on these sub-scales add up to a total difficulties score. the remaining subscale (pro-social behaviour) measures the child's strengths in social interactions (goodman 1997). items are scored on a three-point likert scale (goodman et al. 2003). class teachers will be asked to complete the informant version of the sdq (mostert 2007) on two occasions for each participant, before and directly after implementation of the anxiety intervention programme. the informant version of the sdq assesses the teacher's perception of whether a child has a problem or not. focus is given to chronicity, distress, social impairment and burden. the sdq has been found to have favourable psychometric properties and the questionnaire was deemed to have good construct validity, as it was found to have substantial correlations with other indices of psychopathology (goodman, meltzer & bailey 1998; goodman, renfrew & mullick 2000; goodman et al. 2003). qualitative outcomes the final outcome measure relates to the qualitative evaluation of the programme. it is not only important to determine whether a programme works, but also whether the participants consider the programme to be beneficial and worthwhile (barrett & turner 2001). for this reason, after completion of the 10 sessions, oral instructions will be given to participants to complete a series of short questions compiled by the researcher. these questions provide an opportunity to obtain qualitative feedback from the participants relating to their experience of, and satisfaction with, the anxiety intervention programme. statistical analyses the statistical package for the social sciences (spss) (van leeuwen et al. 2006) will be used to calculate descriptive and non-parametric statistics. as a result of the envisaged small sample size (n = 60), a mann-whitney test will be used to determine the significance of differences between the quantitative pre-and-post intervention measures (george & mallery 2006). pre-intervention (t1) scores will be analysed to determine the equivalence of the iig and the dig, before the intervention and change scores (difference between the pre-and post-intervention scores) for the iig and dig will be compared to evaluate change as a result of the intervention programme. qualitative data will be analysed by means of thematic content analyses. discussion top ↑ this study will employ a randomised wait-list control group design with pre and post-intervention measures to evaluate the effectiveness of a specifically tailored, group-based, cbt anxiety intervention programme for 9–13 year old south african children with visual impairments. it is hypothesised that children in the iig will experience significantly reduced symptoms of anxiety when compared to children in the dig. strengths and limitations the major strength of this study is that it is the first of its kind, with no studies focussed on anxiety prevention and early intervention programmes for children with visual impairments having been conducted previously. thus, this research has a novel methodology and it will fill an important gap in the literature by developing and promoting critically needed, specifically tailored anxiety prevention strategies which can be used by children with visual impairments. expected advantages for participants include: a reduction in anxiety symptomology an increase in self-efficacy the acquisition of helpful problem solving skills and coping strategies. thus, the programme is aimed at optimising human development and, in this way, contributing to future wellbeing and potentially reducing the prevalence of anxiety in the population of children with visual impairments. rather unique to the study's design is the qualitative feedback from the participants and facilitators relating to their experience of and satisfaction with the anxiety intervention programme. these qualitative data will provide much-needed information to aid in the understanding of an under-researched problem, namely anxiety experienced by children with visual impairments. one limitation is the study's small sample size. this is the result of logistical and geographical constraints. south africa is a large country and schools for children with visual impairments are widely dispersed which, thus, limits the author's capacity to travel to numerous schools on a week-by-week basis. implications for practice if it is found that this anxiety intervention programme is effective in reducing symptoms of anxiety in south african children with visual impairments, this group-based universal intervention will lay down the foundation upon which future contextually sensitive (south african) anxiety intervention programmes can be built. furthermore, a recent article by lyner-cleophas et al. (2014) highlighted the importance of developing coping skills at an early age for academic success later in life. conclusion top ↑ this study will evaluate the effectiveness of a specifically tailored, group-based, cbt anxiety intervention programme for south african children with visual impairments, and the results rendered by the study will provide insights into the effectiveness of the anxiety intervention, and determine its suitability for future use within the south african context. acknowledgements top ↑ the authors would like to thank professors leslie swartz (stellenbosch university) and prof paul stallard (bath university) for their invaluable comments and insights throughout the process of drafting this manuscript with regard to the proposed study. the financial assistance of the national research foundation (nrf), south africa as well as the fulbright scholarship program towards this research is hereby acknowledged. opinions expressed and conclusions arrived at, are those of the authors and are not necessarily to be attributed to the nrf or the fulbright scholarship program. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors' contributions l.v. (stellenbosch university) will carry out the study and she drafted the initial manuscript. both l.v., h.l. (stellenbosch university) and w.k.s. 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clinical psychology review 19(2), 131–135. http://dx.doi.org/10.1016/s0272-7358(98)00068-3 wilhelm, j.g., 1989, ‘fear and anxiety in low vision and totally blind children’, education of the visually handicapped 20, 163–172. world health organization, 2000, preventing blindness in children, report of a who/iapb scientific meeting, viewed 11 february 2009, from http://www.uniteforsight.org/eye_stats.php world health organization, 2004, prevention of mental disorders: effective interventions and policy options, geneva, viewed 08 november 2012, from http://www.who.int/entity/mental_health/evidence/prevention_of_mental_disorders_sr.pdf abstract introduction methods results discussion conclusion acknowledgements references about the author(s) terry j. ellapen school of biokinetics recreation and sport, physical activity sport and recreation (phasrec), north-west university, south africa henriëtte v. hammill school of biokinetics recreation and sport, physical activity sport and recreation (phasrec), north-west university, south africa mariëtte swanepoel school of biokinetics recreation and sport, physical activity sport and recreation (phasrec), north-west university, south africa gert l. strydom school of biokinetics recreation and sport, physical activity sport and recreation (phasrec), north-west university, south africa citation ellapen, t.j., hammill, h.v., swanepoel, m. & strydom, g.l., 2018, ‘the benefits of hydrotherapy to patients with spinal cord injuries’, african journal of disability 7(0), a450. https://doi.org/10.4102/ajod.v7i0.450 review article the benefits of hydrotherapy to patients with spinal cord injuries terry j. ellapen, henriëtte v. hammill, mariëtte swanepoel, gert l. strydom received: 10 nov. 2017; accepted: 04 apr. 2018; published: 16 may 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: many patients with spinal cord injury (pwsci) lead sedentary lifestyles, experiencing poor quality of life and medical challenges. pwsci don’t like to participate in land-based-exercises because it’s tedious to perform the same exercises, decreasing their rehabilitative compliance and negatively impacting their well-being. an alternative exercise environment and exercises may alleviate boredom, enhancing compliance. objectives: discuss the benefits of hydrotherapy to pwsci concerning underwater gait-kinematics, thermoregulatory and cardiovascular responses and spasticity. methodology: a literature surveillance was conducted between 1998 and 2017, through the crossref meta-database and google scholar, according to the prisma procedures. key search words were water-therapy, aquatic-therapy, hydrotherapy, spinal cord injury, rehabilitation, human, kinematics, underwater gait, cardiorespiratory, thermoregulation and spasticity. the quality of each paper was evaluated using a modified downs and black appraisal scale. the participants were records pertaining to pwsci and hydrotherapy. the outcomes of interest were: hydrotherapy interventions, the impact of hydrotherapy on gait-kinematics, thermoregulation during water submersion and cardiorespiratory function of pwsci. omitted records included: non-english publications from before 1998 or unrelated to hydrotherapy and pwsci. the record screening admissibility was performed as follows: the title screen, the abstract screen and the full text screen. results: literature search identified 1080 records. upon application of the exclusion criteria, 92 titles, 29 abstracts and 17 full text records were eligible. only 15 records were selected to be included in this clinical commentary. evidence shows a paucity of randomised control trials (rct) conducted in this field. conclusion: hydrotherapy improves pwsci underwater gait-kinematics, cardiorespiratory and thermoregulatory responses and reduces spasticity. introduction hydrotherapy, also known as aquatic or water therapy, has long been perceived as an effective, yet underutilised, therapeutic modality (kesiktas et al. 2004). the benefits of hydrotherapy include enhanced aerobic capacity, improved muscle strength and endurance, increased joint range of motion (anti-spasticity), as well as decreased muscle fatigue and joint pain, enhanced cardiorespiratory functioning and a reduced cardiometabolic risk profile (kesiktas et al. 2004). the majority of patients with spinal cord injury (pwsci) lead sedentary lives, associated with a poor cardiometabolic profile (diabetes mellitus, increased insulin resistance, decreased insulin sensitivity, increased adiposity, obesity and body mass index as well as poor cardiorespiratory function) (nooijen et al. 2016). attempts to combat the poor cardiometabolic risk profile of pwsci usually involve upper limb land-based exercises (tweedy et al. 2016). la fountaine et al. (2015) reported that these upper limb exercises are not as effective as lower limb exercises with regard to expending energy. a primary goal of exercising is to increase pwsci’s energy expenditure, thereby improving their poor cardiometabolic risk profile (la fountaine et al. 2015). in order to increase energy expenditure, the rehabilitation programme’s frequency, intensity and duration are increased, so that in turn it often leads to more upper limb injuries (ellapen et al. 2017). ellapen et al. (2017) reported that habitual use of the same upper body exercises leads to overuse orthopaedic injuries and boredom, resulting in poor rehabilitative exercise adherence. strydom et al. (2009) reported that variation in habitual exercise and rehabilitative regimes increases patient adherence and subsequently is able to positively impact the realisation of the programme objectives. hydrotherapy provides the following alternative options to land-based exercises: (1) a different rehabilitative environment, (2) the prescription of different upper limb and core exercises and (3) the opportunities for group and/or individual rehabilitation sessions with the exercise therapist (thereby increasing social interaction) (kesiktas et al. 2004). the therapeutic benefits of hydrotherapy relate to the following fundamental principles of hydrodynamics: (1) density, (2) drag, (3) buoyancy, (4) hydrostatic pressure and (5) thermodynamics. density is explained using archimedes’ law of buoyancy, that the upward buoyant force exerted on an object immersed in water is equal to the weight of the water (or fluid) that the object displaces. this means that the human body, being of lower density than water, is subjected to a buoyant force (bringing the body to the surface) equal to the weight of the water that is displaced by the body’s immersion (becker 2009). thus, buoyancy occurs when a person is immersed in water, producing water displacement and progressively offloading the force of gravity on the immersed joints. by immersing the patient in water up to the cervical, thoracic (xiphoid process) and hip (pubic symphysis) joints, the therapist is able to offload 85%, 60% and 40%, respectively, of the patient’s individual body weight (gravity) that would normally weigh down on the submersed joints (becker 2009). buoyancy has great therapeutic value by allowing pwsci to become mobile in the water without the resistance of gravity. the water becomes a dynamic fluid medium that allows pwsci to safely, spontaneously and independently exercise and stabilises their lumbopelvic hip, thoracic and cervical muscles without relying on the use of their upper limbs in order to support their posture during the exercise, as is often the case during land-based exercises. this can be the key in the prevention of upper limb overuse injuries. drag force refers to the size of the internal resistive friction against movement in the fluid medium (water) (poyhonen et al. 2000). the magnitude of drag increases as more force is exerted by the person, but is immediately neutralised (returning to zero) upon the cessation of movement, thereby providing accommodative hydro-resistance and thus preventing injuries in a similar manner to land-based isokinetic accommodative resistance (poyhonen et al. 2000). hydrostatic pressure is the pressure exerted by the water during equilibrium at a given point during submersion, caused by gravity. hydrostatic pressure is directly influenced by the density of water and by the depth of submersion. hydrostatic pressure assists in the dissipation of oedema, in the gradual increase in joint range of motion and in combatting spasticity (becker 2009). thermodynamics refers to water’s ability to transfer heat. a significant therapeutic value of hydrotherapy depends on its ability to retain heat, as well as the transfer thereof. fortunately, water is an efficient conductor, transferring heat 25 times faster than that of an equivalent volume of air (bailey et al. 2007). hydrotherapy can be used at a variety of temperatures: ice water baths are often used post-training by athletes to reduce the effect of delayed-onset muscle soreness, to promote the dissipation of inflammation and to quicken their recovery from training (bailey et al. 2007). warm water immersion decreases muscle pain, increases vasodilation and blood circulation, lowers heart rate and enhances thermoregulatory responses (munguia-izquierdo & legaz_arrese 2007; ingram et al. 2009). the temperatures of typical hydrotherapy pools range from 33.5 °c to 35.5 °c (bailey et al. 2007). heat transmission starts immediately upon initial water submersion primarily because the human body has a lower heat capacity than water (bailey et al. 2007). over and above the benefits regarding heat conduction, water has further benefits related to respiration: boyle’s law suggests that the volume of any gas varies inversely with the pressure exerted upon it. greater submersion depth, therefore, increases the hydrostatic pressure against the thoracic cage, thereby inversely impacting its lung volume. the therapeutic benefit is the increased respiratory cost during water submersion, which expends more calories and improves respiratory efficiency, positively impacting one’s cardiometabolic profile (becker 2009). according to the authors’ knowledge, there have been two reviews published on aquatic therapy in relation to pwsci (li, khoo & adan 2017; recio, stiens & kubrova 2017). li et al. (2017) is the only systematic review that evaluates the quality of the research of aquatic therapy and exercise prescribed to pwsci. however, li et al. (2017) did not discuss the rehabilitation and exercise physiology mechanisms, but highlights the value of hydrotherapy. recio et al. (2017) only describe the clinical anti-spasticity and ventilatory benefits of hydrotherapy for pwsci; they neither describe the methodology used to find the papers nor the pwsci’s underwater gait kinematics, thermoregulatory and cardiorespiratory responses to aquatic therapy. this commentary combines the elements of rigorous methodology undertaken by li et al. (2017) in their systematic review and the discussion of the therapeutic benefits of hydrotherapy for pwsci. further, the novelty of this commentary lies in the biomechanical discussion of hydrotherapy, specifically considering pwsci’s gait kinematics, cardiorespiratory, spasticity and thermoregulatory responses. the aim of this commentary is to determine the effect of hydrotherapy on pwsci’s gait kinematics, muscle spasticity, cardiorespiratory and thermoregulatory responses. methods the authors followed the standard practices for systematic reviews: preferred reporting items for systematic reviews and meta-analyses (prisma). information sources and searches: a literature search of peer-reviewed records was conducted using the following search engine: crossref meta-database, which is an academic database comprising of the following search engines: pubmed, medline, science direct, ebscohost, cinahl and google scholar (figure 1). the keywords used in the literature search were water therapy, aquatic therapy, hydrotherapy, spinal cord injury, rehabilitation, human, kinematics, underwater gait, cardiorespiratory, thermoregulation and spasticity. the screening eligibility of records was performed in the following three steps: (1) the title screen, (2) the abstract screen and (3) the full text screen. the records were screened by tje, hvh, ms and gls. figure 1: flow chart of the review process. eligibility criteria: the participants in this study were records pertaining to pwsci and hydrotherapy; the intervention was not necessarily a therapeutic intervention but is interpreted as an exposure, namely the effect of hydrotherapy on the well-being of pwsci. the outcomes of interest were (1) hydrotherapy interventions for pwsci, (2) the impact of hydrotherapy on pwsci gait kinematics, (3) the effect of hydrotherapy on pwsci thermoregulation during water submersion and (4) the impact of hydrotherapy on pwsci cardiorespiratory function. the exclusion criteria were (1) publications prior to 1998, (2) literature pertaining to hydrotherapy and animals, (3) literature related to hydrotherapy as an ergogenic aid among able-bodied athletes, (4) the impact of hydrotherapy on the health and well-being of able-bodied athletes and (5) non-english papers. study selection: the appraisal of the quality of records all records were filtered based on the appropriateness of their title and the inclusion criteria. the quality of each record was appraised using a modified downs and black appraisal scale, which examines the quality of randomised controlled trials and non-randomised papers (downs & black 1998) (table 1). the evaluation of the quality of each record reduced the risk of researcher biasness. the modified downs and black checklist was adopted as not all the items on the original checklist were related to this paper, as similarly cited in ellapen et al. (2017). the modified checklist comprises 16 questions with a maximum of 16 points. answers were given a score of either 0 (no) or 1 (yes). the questions adopted from the downs and black appraisal scale were questions number 1, 3, 4, 5, 6, 10, 11, 12, 13, 14, 18, 20, 21, 22, 23 and 27. these questions are categorised into four sections in order to assess the overall quality of each paper (table 2). the sections include reporting prowess (n = 5 questions), external validity (n = 3 questions), internal validity (n = 3 questions) and power of significance (n = 5 questions) (downs & blacks 1998). all authors were allowed to dispute the scoring of each record. the authors would then discuss scores and adopted the mutually accepted score. the sum of these scores was then converted to a percentage so as to rate the overall quality of the individual papers (downs & black 1998). the overall quality of the papers was graded using a scale defined as follows: < 50% (weak), 50% – 69% (fair), 70% – 79% (good) and < 80% (very good) (downs & black 1998). table 1: appraisal of records according to the modified downs and black appraisal scale. table 2: chronological overview of the characteristics and findings of the records (n = 15). table 2 (continues...): chronological overview of the characteristics and findings of the records (n = 15). results the literature review identified 1080 records by the use of the key search words (water therapy, aquatic therapy, hydrotherapy, spinal cord injury, rehabilitation and human). the application of additional key words (kinematics underwater gait, cardiorespiratory, thermoregulation and spasticity) resulted in 92 records. all the titles of each record were screened (n = 92); however, only 29 abstracts were screened. thirty-seven animal records, 26 duplicate records, 10 records pertaining to non-pwsci and 2 non-english records were excluded. the remaining 17 full text records were reviewed. two full text records comprised of one animal record and the other that pertained to the adoption of hydrotherapy as an ergogenic aid. the remaining 15 records comprised of 4 systematic reviews pertaining to pwsci (but 2 specific to hydrotherapy), 7 non-randomised control trials, 2 randomised control and 2 case studies (table 2). table 1 assesses the quality of each record according to the modified downs and black appraisal scale (in an attempt to eliminate risk of biasness). a descriptive overview of the characteristics and findings of the studies is found in table 2. a total of 142 participants were reported (but 83 pwsci), with sample sizes varying from 1 to 30 and participant age varying from 5 to 70 years. five studies provided kinanthropometric characteristics, whereas 5 studies considered the number of years injured, and 10 studies described the aquatic exercise intervention. the overall quality of the studies was rated as fair (62.0%) (table 1). discussion the discussion will focus on the empirical findings of the impact of hydrotherapy on the gait kinematics of pwsci as well as their thermoregulatory, spasticity and cardiorespiratory responses. kinematic gait analyses the kinematic gait analysis studies involved the review of the form or technique of pwsci underwater walking. zamparo and pagliaro (1998), prosser (2007) and tamburella et al. (2013) all concur that the patients’ gait kinematics, walking speed and stride length improved after the completion of hydrotherapy. however, the aforementioned authors failed to describe the biomechanical mechanism facilitating pwsci-enhanced gait kinematics. it was postulated that hydrostatic pressure combined with the effects of buoyancy enhanced the patients’ lumbopelvic hip complex form and force closure, thereby enhancing their underwater gait kinematics. buoyancy helped elevate the contralateral hip during the stance phase, thereby decreasing the muscle contraction force required to elevate the contralateral hip. furthermore, buoyancy negated the effects of gravity, enhancing the swing phase of the ipsilateral hip. zamparo and pagliaro (1998) also reported that pwsci energy expenditure was lower during underwater walking as compared to land-based walking at specific speeds, which allowed them to walk for longer. however, zamparo and pagliaro’s (1998) study was limited by their research design (experimental, non-rct and without concurrent controls). therefore, zamparo and pagliaro (1998) recommended future empirical investigations adopting experimental rct procedures with comparative concurrent controls in order to validate the findings of the prospective studies. however, lucksch et al. (2013) and jung et al. (2014) heeded to zamparo and pagliaro’s (1998) recommendations. this computes into two rct out of 92 records (2.1%) published during the period of 1998 to 2017 pertaining to human pwsci and hydrotherapy. the authors of this article strongly encourage more rct examining the effects of hydrotherapy on pwsci needs to be completed and published. this empirical evidence will help to encourage exercise therapists to prescribe hydrotherapy as a supplement to other management practices of pwsci. gass and gass (2001) and gass et al. (2002) confirmed zamparo and pagliaro’s (1998) postulation that increased exercise duration will augment energy expenditure of paraplegic patients in a manner that will positively impact their cardiometabolic profile. tweedy et al. (2016) and ellapen et al. (2017) both concur that lower limb exercises (i.e. walking and strengthening) expend more energy than upper limb exercises. therefore, lower limb exercises are needed to increase pwsci energy expenditure to help improve their cardiometabolic risk profile. the authors of this study recommend that pwsci should engage in hydrotherapeutic walking before land walking. the hydrotherapeutic walking will serve to condition the pwsci lower limb neuromuscular system, preparing them for land walking and simultaneously increasing energy expenditure, lowering their cardiometabolic risk profile. thermoregulatory response to exercising in warm water submersion exercising while submerged in warm water lowers the heart rate and enhances thermoregulatory responses, thereby prolonging the pwsci’s ability to exercise and thus increasing their aerobic capacity (gass & gass 2001; gass et al. 2002). the prolonged exercising during water submersion increases the patient’s energy expenditure, thereby lowering their cardiometabolic risk profile. water is an excellent conductor of heat, which enhances patients’ ability to effectively thermoregulate their bodies when exercising and maintains a low core temperature (becker 2009). this further physiological adaptation also contributes to the ability of patients to exercise for longer, thereby improving their cardiorespiratory function and energy expenditure (gass et al. 2002; becker 2009). decreased spasticity response to hydrotherapy kesiktas et al. (2004) reported that pwsci experienced a significant reduction in muscle spasticity with a reduced dosage of oral baclofen because of hydrotherapy. this is the only study, among numerous clinical reports of reduced muscle soreness, spasticity and increased joint range of motion among arthritic patients, who also experience spasticity (eversden et al. 2007), to report this result. becker (2009) reported that the physiological rationale behind the efficacy of hydrotherapy on spasticity, muscle soreness and joint range of motion is enigmatic. therefore, further clinical investigation should be undertaken so as to unravel the physiological mechanism of the efficacy of hydrotherapy in relation to the aforementioned maladies. cardiorespiratory benefits the patient’s cardiorespiratory adaptations are based on boyle’s law. when a person is submersed in water, the hydrostatic pressure against the body increases, thereby decreasing their lung volume (becker 2009). greater submersion depth increases the hydrostatic pressure, making breathing more costly. becker (2009) reported that the patient’s vital capacity is reduced by 6% – 9% because of compression by external hydrostatic pressure which counteracts inspiratory muscle action. energy expenditure at rest increases by 60% during neck-level submersion which in turn enhances inspiratory muscle strength and endurance, serving as an effective respiratory rehabilitative exercise medium able to counteract respiratory diseases (taylor & morrison 1999; becker 2009). pachalski and mekraski (1980) reported that pwsci gained a greater cardiorespiratory fitness improvement by following an aquatic exercise programme as compared to land-based exercises. van houtte, vanlandewijck and gosselink (2006) and jung et al. (2014) reported that respiratory muscle rehabilitation conditioning programmes increase the expiratory muscle strength, vital capacity and residual volumes of pwsci. when a person is submerged in water, blood is displaced towards the heart, thereby enhancing central venous return, which in turn increases arterial and ventricular filling and results in a subsequent decrease in heart rate (becker 2009). there is a significant increase in end-diastolic volume, producing a larger stroke volume. during aquatic exercising, maximal oxygen consumption is greater than that of land-based exercise, allowing for greater energy expenditure at slower speeds and prolonged activity (becker 2009). during neck-level submersion, there is a decrease in sympathetic nervous activity which reduces peripheral resistances, thereby allowing greater venous return (becker 2009). stevens and morgan (2015) reported that habitual underwater treadmill walking reduces pwsci heart rate, suggesting enhanced cardiorespiratory function. it is hypothesised that the lower exercise heart rate experienced during underwater walking combined with effective thermoregulatory response will increase exercise duration or walking distance, thereby increasing energy expenditure, which in turn will positively impact on the cardiometabolic profile of pwsci. it should, however, be noted that these suppositions require clinical validation. conclusion hydrotherapy aids in reducing pwsci muscle spasticity and cardiometabolic risk profiles, while favourably enhancing underwater gait kinematics and cardiorespiratory capacity. however, more rct should be undertaken to increase the present body of knowledge. acknowledgements the authors would like to acknowledge the paper by ellapen et al. 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persons with spinal cord injury: a systematic review’, respiratory medicine 100(11), 1886–1895. https://doi.org/10.1016/j.rmed.2006.02.029 wall, t., falvo, l. & kesten, a., 2017, ‘activity specific aquatic therapy targeting gait for a patient with incomplete spinal cord injury’, physiotherapy theory and practice 33(4), 331–344. https://doi.org/10.1080/09593985.2017.1302026 zamparo, p. & pagliaro, p., 1998, ‘the energy cost of level walking before and after hydro-kinesi therapy in patients with spastic paresis’, scandinavian journal of medicine in science and sport 8(4), 228–28. https://doi.org/10.1111/j.1600-0838.1998.tb00196.x abstract background methodology findings discussion and conclusions acknowledgements references about the author(s) tom shakespeare norwich medical school, university of east anglia, norwich, united kingdom anthony mugeere department of sociology and anthropology, makerere university, kampala, uganda emily nyariki school of public health, university of nairobi, nairobi, kenya joseph simbaya institute of economic and social research, university of zambia, lusaka, zambia citation shakespeare, t., mugeere, a., nyariki, e. & simbaya, j., 2019, ‘success in africa: people with disabilities share their stories’, african journal of disability 8(0), a522. https://doi.org/10.4102/ajod.v8i0.522 original research success in africa: people with disabilities share their stories tom shakespeare, anthony mugeere, emily nyariki, joseph simbaya received: 05 apr. 2018; accepted: 27 sept. 2018; published: 25 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: whereas most narratives of disability in sub-saharan africa stress barriers and exclusion, africans with disabilities appear to show resilience and some appear to achieve success. in order to promote inclusion in development efforts, there is a need to challenge narratives of failure. objectives: to gather life histories of people with disabilities in three sub-saharan african countries (kenya, uganda and sierra leone) who have achieved economic success in their lives and to analyse factors that explain how this success has been achieved. methods: qualitative research study of economic success involving life history interviews with 105 participants with disabilities from both urban and rural settings recruited through disabled people’s organisations and non-governmental organisation partners, framework analysis of transcripts to chart success and success factors. results: participants had faced barriers in education, employment and family life. they had largely surmounted these barriers to achieve success on an equal basis with others. they were working in private and public sectors and were self-employed farmers, shopkeepers and craftspeople. conclusion: the findings of this study suggest that, given the right support, disabled people can achieve economic success, with the implication being that investment in education or training of disabled people can be productive and should be part of overall development efforts for economic reasons, not solely to achieve social justice goals. keywords: disability; education; employment; africa; achievement. background in understanding the experience of disability in africa, particularly in terms of poverty and livelihoods, there appears to be a paradox. disabled africans face structural factors such as barriers in the environment, in education and in employment, as well as widespread discriminatory attitudes, that limit their chances of achieving success on an equal basis with others (banda-chalwe, nitz & de jonge 2013; groce et al. 2011; who 2011). for example, eide and ingstad (2013) summarise the findings of the 2002–2013 series of seven sintef surveys on disability in africa: key indicators on education, mental and physical health, employment, socio-economic status, access to information, social participation, et cetera all point in the same direction: there are substantial gaps in services to disabled people, disability is associated with a lower level of living when compared to non-disabled persons, women with disabilities are worse off than males, and the rural disabled have a lower level of living than their urban counterparts. (p. 2) the sintef data are confirmed by other studies across the african continent (trani & loeb 2012; trani et al. 2010). international data confirm that this situation is general for people with disabilities in lowand middle-income settings. from filmer (2008), it is evident that adults with disabilities are more likely to live in poorer households. mitra, posarac and vick (2011) analyse multidimensional poverty among people with disabilities in lowand middle-income countries. persons with disabilities are disproportionately unemployed or economically inactive. a detailed study of access barriers for people with mobility impairment in zambia shows some of the reasons why people with disabilities are so often excluded from education, employment, transport and other social goods (banda-chalwe et al. 2013). similarly, there are barriers to participation for deaf people, as was found in uganda (mugeere et al. 2015). as a consequence of this exclusion from public life, and the worlds of education and employment, at first glance prevailing cultural representations of disability in africa appear overwhelmingly negative, featuring discourse of people with disabilities as ‘economically invalid and economically dependent’ (tsemma 2014:145). even in uganda, negative attitudes are common, despite the vigour of the disability rights movement (abimanyi-ochom & mannan 2014). as in most developing countries, a person with disability is more likely to be seen begging at the traffic lights than to be encountered as a teacher or doctor or shopkeeper (groce et al. 2013). faced with these barriers to achievement, it is no surprise that research finds deep cultural beliefs about disability and incapacity across the african continent (munsaka & charnley 2013; swartz & marchetti-mercer 2017). yet at the same time, anyone who spends time working with people with disabilities in africa – or many other low-income settings – has encountered dozens of successful, assertive, proud persons with disabilities. often, these folk are associated with vibrant disabled people’s organisations (dpos), but increasingly they have moved on into mainstream roles in society. in reviewing qualitative studies, eide and ingstad (2013) point to the importance of capturing the agency of people with disabilities, while balancing that with an awareness of the structural forces that make it so difficult for people with disabilities and their households to survive, let alone thrive. hearing the voices of people with disabilities living in poor conditions is emphasised: they suggest that while disability and poverty are linked, some people with disabilities do manage: individuals with disabilities living in poverty do struggle to survive and to make the best out of their situation – and there are encouraging examples of individuals who have used their disability as a resource for themselves and for others in the community. (eide & ingstad 2013:6) the danger could be that the achievement of these more successful persons with disabilities remains largely invisible, which could mean that investment in disabled people by national governments or international donors – whether in education, vocational rehabilitation, employment, or social protection – might be considered to be a waste. funding participation of people with disabilities might thus be considered to be more of a charitable or humanitarian response, rather than a development priority. yet this thinking risks excluding 15% of the population (who 2011). this is not simply a moral problem; it could also be an economic mistake: for example, buckup (2009) argued, in a study for international labour organisation which included zambia, that exclusion of people with disabilities from the world of work causes economic losses of 3.7% of gdp. kenya, uganda and zambia have all ratified the convention on the rights of persons with disabilities, as well as domestic civil rights legislation. for example, in 2012, zambia passed the persons with disabilities act no. 6, aimed at promoting equal participation by persons with disabilities. in uganda, the 2006 persons with disabilities act offers tax credits on employers who take on 10 or more persons with disabilities, as well as obliging workplaces to make modifications, a similar approach to kenya’s 2003 persons with disabilities act (tsemma 2014). there is still, however, a long way to go before everyone understands disability to be a human rights issue, not a charitable issue (abimanyi-ochom & mannan 2014; tsemma 2014); there is an implementation gap between the positive legislative picture and the situation on the ground (abimanyi-ochom & mannan 2014; owens & torrance 2016). world bank data, where available, casts light on the situation in these three countries. kenya, uganda and zambia are comparable on health indicators. life expectancy is reported to be 61.3 for zambia and 59.5 for uganda. the contrasting role of government health services is indicated by data on out-of-pocket health expenditure, which comprises 26.1% of healthcare costs in kenya, 30% of healthcare costs in zambia and 41% of healthcare costs in uganda. of note is the fact that 11% of zambian children and 6.2% of ugandan children are out of school. zambia, thanks to copper exports, has the highest gdp per capita at $1627, followed by kenya at $1143 and uganda at $662. in each setting, most people live in rural areas and a minority live in urban areas (2013: 25% of kenyans, 15% of ugandans and 40% zambians). the complexity of trying to understand individual disability successes within the backdrop of disadvantage fuelled the department for international development/economic and social research council-funded research project reported in this paper, which had the aim of exploring factors that explained the success of some persons with disabilities on the african continent. success was not firmly defined in advance by the researchers, but was defined locally. success was predominantly understood in economic terms. to be successful was to enjoy economic prosperity on an equal basis with others, to use the language of the un convention on the rights of persons with disabilities. in this project, the researchers were looking for persons with disabilities who were either working as self-employed people or employed in mainstream, dpo or non-governmental organisation (ngo) settings. very few of them could be classified as wealthy, but all of them were getting by, and most of them were able to have their own home and start a family. in order to home in on this criterion of economic independence, for the purposes of this study people with intellectual disabilities were excluded because they were considered to be less likely to have achieved this goal, although it was recognised that some people with intellectual disabilities were contributing to their households. people with mental health conditions were also excluded because these are often fluctuating situations, with complex impacts on livelihood. in limiting the study to people with physical and sensory impairments, the researchers did not negate the difficulties of these other population groups, nor the fact that some of them could be considered successful on the same or different terms. they aspired to study these experiences in a future project. the current paper reports on the findings about the extent and nature of success experienced by these participants, whereas a subsequent paper will analyse the factors that might explain this success. methodology this study was conducted in kenya, sierra leone, uganda and zambia, although data from sierra leone are not reported in this paper. the aim is to complete transcription and publish the sierra leone data in a subsequent publication. this study entailed conducting in-depth life story interviews with persons with disabilities in both urban and rural settings who had experienced success in their lives. the research team did not attempt to define what success was precisely, although the recruitment material was explicit about economic success being the main criterion. the researchers did not seek those who were remarkable – for example, paralympians or millionaires – but instead sought out everyday life stories of individuals who had succeeded on an equal basis with others. the ambition was to recruit approximately equal numbers of men and women. recruitment was via dpos, such as national union of disabled persons of uganda, association of disabled persons of kenya; as well as through ngos, such as leonard cheshire disability; and also, government agencies such as zambia agency for persons with disabilities. efforts were made to recruit half of the participants in urban and half in rural settings. in uganda and zambia, participants were purposefully recruited from different regions of the country, as well as the capital cities, using existing networks. the kenyan team also recruited from both nairobi and a rural district. it was not at all difficult to recruit people with disabilities who were perceived to be successful in their communities, drawing on existing ngo and dpo networks. however, although the team set out to conduct 40 interviews in each setting, the final data set comprised only 104 participants, which was mainly because of constraints on staff time. there are a further 12 transcripts from sierra leone, although 40 interviews have been conducted there. all authors were responsible for the interviews. all interviews were recorded and then transcribed. analysis was conducted using the framework analysis approach (ritchie & spencer 1994). after reading and rereading the transcripts, a framework was constructed according to the themes which emerged from the stories. a separate framework was created for each country, using excel. a separate section of the framework was created to cover individual, family education, employment, attitudes and help received. the next stage was charting, where each transcript was analysed according to the framework, and summaries were added to the excel spreadsheet. for each country, at least three different coders created, added or revised the framework, reaching a consensus as to how to analyse the data most completely and accurately. use of the framework analysis approach, based on excel spreadsheets, made it easy to compare participants and also to share the data analysis across the three african countries as well as uk and south africa. ethical considerations information about the study was provided to all participants, each of whom gave written or in a few cases oral consent. all data were anonymised after transcription. ethics review was conducted by the ethics committee of the university and local research ethics committees and permissions were granted. this study received ethical clearance from the ethics committee of university college london (1661/007), as well as from relevant ethics committees in kenya (nacosti/p/16/92785/12347), uganda (ss4207) and zambia (2016-mar-011). findings impairment this was an opportunity sample, and the breakdown of respondents reflects the local activities of leonard cheshire disability and the relevant dpos who distributed the request for participants, as well as the personal networks of the researchers and other individuals involved in the bridging the gap research programme (table 1). table 1: impairments of participants in study. in general, the distribution of impairments among the participants was similar across the three settings. the majority of impairments were either congenital – such as albinism or restricted growth – or else resulted from illness or trauma which occurred before the age of 18. the impact of polio was disaggregated from the other mobility impairments because it was so dominant, although it should be noted that polio is no longer endemic to these three countries. in general, it was interesting to note that the majority of the impairments were preventable: for example, blindness resulting from measles, cerebral palsy resulting from malaria, paralysis resulting from polio or a road traffic injury, and impairments resulting from violence. perhaps because the intention was to sample persons with disabilities of working age, there was no one who was primarily affected by the typical late-onset conditions which are familiar from high-income settings, such as diabetes, or stroke, although there was one individual with arthritis. education between a tenth and a third of participants had failed to complete school, mainly owing to barriers. with these exceptions, the remaining participants were well educated, whether they had attended special schools or mainstream schools. while they came from diverse socio-economic backgrounds, the participants generally appeared to have very good intelligence and emotional intelligence, meaning that they were better able to benefit from their education and overcome the obstacles they faced, whether around travel to school or in the classroom itself. it should be noted that according to the psychological literature, intelligence has been found to be one of the key factors underlying resilience. because they showed individual promise, several participants were successful in attracting interest from relatives or benefactors who were willing to pay school or university fees. those who had been lucky enough to reach university often had their fees paid by the government (table 2). table 2: highest educational level of study participants. those who did not complete secondary schooling were more likely to be in rural areas, where factors like lack of money to pay school fees explain the lack of formal qualifications. some individuals who did not complete school had gone on to undertake vocational rehabilitation courses, for example, as a cobbler or as a knitter. individuals attaining diplomas tended to have undergone teacher training or attended agricultural college or become accountants. uganda in particular had astounding educational achievements, with nearly two-thirds of participants achieving university degrees, twice the success of kenya and zambia. two ugandans had studied at kenyan universities, one at a netherlands university. one kenyan participant had gone to university in rome, another had studied in canada. this evident success masks the barriers that participants had overcome in order to complete their education. for example, a kenyan woman with mobility impairment had been unable to attend a school which was 3 km away, until her grandfather made her walking sticks and so from age 10 she could manage the journey. she reported that ‘you had to be tough’ in the face of an unfriendly educational environment’ (respondent 301). another kenyan (respondent 326) reported losing 8 years of schooling after becoming disabled. those who attended school (e.g. respondent 318) faced neglect, problems in accessing the toilet and in having to queue for long periods. but the biggest challenge was the attitudes of others who might mock the disabled person (response 322) or ostracise them (respondent 312) or bully them, such as the mobility-impaired ugandan child whose school peers used to take away his walking stick ‘to test him on how he would walk without them’ (respondent 205). one ugandan woman with restricted growth reported that teachers as well as pupils would mock her (respondent 206). some deaf participants reported being so frustrated at the communication and information barriers they faced that they dropped out of school for periods of time (e.g. respondent 214). others had changed schools, sometimes more than once, so as to avoid difficulties. where they faced barriers, these participants used ingenuity to overcome those barriers. for example, one kenyan deaf woman described how she had attended mainstream school. when asked how she coped in a big class, where she could not hear and there was no sign language interpreter, she explained that she copied the notes of the cleverest pupil. where she did not understand the notes, she looked at another schoolmate’s notes, until she had learned the lesson. in a rote-learning system, she was successful because she worked hard and memorised the notes, and thus passed her examinations. she went on to attend teacher training, and then obtained an education degree and finally postgraduate education. these achievements are more remarkable when it is known that she came from an impoverished background – her parents were uneducated agricultural workers – and faced prejudice – neighbours had told her father that she would never amount to anything and that her deafness was the result of witchcraft. she reported being the only member of her family to have finished school, let alone having tertiary education, and she was now supporting the education of her siblings. similar stories were heard from many participants. a regular refrain was the proud participant who said, ‘i was the only member of my family to finish school’, such as the zambian who told me: ‘it’s like each time i reach a certain stage, i realize i can still do something else’ (respondent 104). it was common for participants to be sponsoring the education of other siblings or younger relatives. these achievements highlight the comparative success of these disabled respondents when compared with non-disabled family members and the impact of their success on their entire families. employment in this study, individuals were specifically recruited on the basis of their economic success, so it is not surprising that almost all were employed in the public or private sector or earning a living as farmers or traders. many individuals who reported, for example, working for a dpo as their main job, also mentioned that they supplemented their salary by subsistence farming, or via commercial activities such as owning and hiring out motorcycles, or tailoring or trading (table 3). table 3: livelihood outcomes for participants. people had had to adapt to different and changing opportunities: for example, the man with visual impairment who had started out as a teacher in a mainstream school, then worked at a special school, then ran a braille press, then worked for a church organisation. as has been noted, in uganda, dpos are very strong. disability rights issues have a high profile, and disabled people have reserved places at all levels of government: for example, several individuals reported their employment as ‘politician’. conversely, dpos appear weaker in zambia. this may be why very able people with disabilities in zambia were working as professionals – teachers, accountants etc. – whereas in uganda these very able people might be working for dpos. participants discussed various barriers in mainstream employment. some had faced discrimination from employers or from co-workers: for example, this was mentioned by half of the kenyan participants. this had either barred access to mainstream employment entirely or hindered further promotion for those who had been successful in getting jobs. people tried hard to be independent, for example the kenyan participant who strived to cope for work, not asking for help ‘unless it is very necessary’ (respondent 333). the negative attitudes towards people with disabilities also affected some participants who needed capital, such as the ugandan woman who sought a loan from a microfinance institution and was asked ‘but will you manage to pay us back our money?’ (respondent 229). a common response to limited employment options was to resort to farming or other self-employment. some respondents worked in the garment industry – as tailors, embroiderers, knitters or cobblers. in rural areas, respondents kept pigs, bees, or chickens or had a fish farm or produced fruit or peanut butter. for those who had not even completed school, there were few other options – although one ugandan (respondent 234) had taught himself photography and made a living as a photographer, supplemented by farming. for example, one zambian participant (respondent 108) had experienced a t4 spinal cord injury while at college, completing most of his education from hospital. he was not aware of any relevant dpo. however, as he said, ‘ok this is just a disability, i can still use my hands and i can still use my brains, let me see what i can do’. facing discrimination in the open job market, he saved money to start his own business. he ran a grocery shop (retail and wholesale) and employed two people. furthermore, he was sponsoring the education of his late sister’s child and another unrelated child. ugandans working in the dpo sector often mentioned they had taken this career path after facing discrimination in mainstream roles, for example, the legal assistant who co-founded a dpo in response to her limited employment options (respondent 241). however, a number of other participants stated they had not experienced discrimination or that they had been well supported in the workplace. above all, the clear thread that runs through the stories of people who were disabled in childhood is the vital importance of education (lamichhane & okubo 2014). for those who become impaired as adults, the key is to ensure they can gain relevant vocational skills for the local market and where necessary achieve access to the unconditional cash transfers (handa et al. 2018) or microfinance loans which are required to set up a business or in farming or to improve productivity of these economic strategies. again, participants who lacked education were sometimes disadvantaged when they developed disability in midlife and could no longer work the land and had no or few other economic options (e.g. respondent 232). family life the birth family of these participants could be both a hindrance and a support. for example, many participants reported negative attitudes or ignorance among relatives. for example, a birth mother left because she could not cope with her son’s needs (respondent 320); a grandmother initially encouraged the parents to leave the child to die (respondent 319); a father walked out on the family because he thought educating the disabled child was a waste of time (respondent 318). similarly, an older brother ‘does not accept or respect me’ (respondent 312), or in other cases (e.g. respondent 311) children went away to boarding school to gain an education, but then struggled to reintegrate into their birth family. yet this was not the whole story. many other participants highlighted the love and support of the mother, father, uncle, aunt, brother, sister or grandparent who enabled them to believe in themselves and fight for inclusion. sometimes the support was very practical, such as the young man whose brothers would carry him 5 km to get to school, and then carry him between classes and to the toilet (respondent 234). other participants told us ‘i cannot even begin to think of how my life would have been without family support’ (respondent 305) or ‘my parents love me, and they show the others that i am a child to them just like the others’ (respondent 330). the mother who told her blind son ‘you, of all my children, must finish school’ echoed the importance with which education was regarded by many parents of disabled children. true acceptance for many disabled people means not just getting an education and finding a job, so as to achieve self-sufficiency, but also finding a partner and having a family. of the 31 kenyan participants, 23 were married or in long-term relationships, and in all, they had 54 biological children. of the 39 ugandan participants, 22 were married or in long-term relationships, with a total of 84 biological children from this cohort. of the 34 zambian participants, 26 were married or widowed, with a total of 110 biological children. in addition, it was a very common theme to hear participants proudly mention that they were supporting their siblings through education or they were looking after their elderly parents. forming a family also added to economic security, for example through having another, often non-disabled, person to assist in farming and other livelihood activities, as well as in household and parenting tasks, and having children or siblings who grow up as economically active family members able to support the disabled individual in old age. people did face difficulties in having a family. several men and women reported that partners left them after they developed a disability (e.g. respondent 204, 223, 228). others had to overcome the prejudices of their partners’ families (e.g. respondent 299). although their economic success could make men eligible as partners, despite disability, this seemed less possible for women. for example, a kenyan woman who made a living as a hawker blamed the prejudice of her mother-in-law for her divorce. a kenyan participant (respondent 302) with phocomelia (missing arms) had gained a bachelor’s degree and then a master’s degree from the uk and had subsequently flourished in the civil service. she said: ‘you do what you can, at least to change the mind of those negative ones, and there are also positive ones who come to embrace you.’ she was now looking forward to retiring to a property with land that she had invested in. although impairment had curtailed romantic relationships, this had enabled her to focus on her career. after all, as she reported: ‘for a disabled person … sometimes having those relationships, they make you more sad.’ at the time of interview, the zambian participant (respondent 108) whose economic success is reported above remained unmarried, lived alone and reported that he was keen to start a relationship. this theme of gender inequalities was taken up by a ugandan woman with restricted growth who told us that she was determined to avoid men. she had other women friends with restricted growth who had been befriended by non-disabled men, who would visit them in the night for sex and who then leave them when they became pregnant. the same story was also told to us by people with albinism and other visible impairments: it appeared that certain unscrupulous non-disabled men were only interested in experimenting with sex with ‘exotic’ women but had no intentions of marrying them. as one woman from uganda reported, non-disabled men ‘use and discard’ women with disabilities (respondent 225). discussion and conclusions the intention of this paper was to report on the evidence of success among some people with disabilities in africa. the data shared here challenge the negative assumptions that imply people with disabilities can never do well, or always need hand-outs. the participants in this study had become extremely self-directed, resilient and positive individuals, who were contributing not just to the well-being of their families but also to the economic development of their society. for example, the kenyan disabled man (respondent 314) who said: ‘i want to show my fellow pwds that we can make it, and when i fully recover i have a vision that i want to create job opportunities for others’. begging was not the only option for persons with disabilities (groce et al. 2013). in the absence of government support, these individuals were overcoming obstacles and making progress on their own. another participant said: ‘if i start pitying myself i will fail, and nobody is caring about me and nobody is willing to help me, so i have to cope with whatever comes ahead of me’. this highlighted how, in the absence of a welfare state or other supports, many individuals with disabilities in developing countries have no choice but to rely on their own resources if they want to survive, let alone thrive. this study adds to our knowledge about persons with disabilities in kenya, uganda and zambia, joining other grassroots studies but expanding our understanding of the circumstances in which people with disabilities can achieve success on an equal basis to others. grassroots qualitative studies add richness to the picture of disability in sub-saharan africa. this qualitative study was not representative of all persons with disabilities. to follow up these findings, a larger quantitative study, representative of adults with disabilities, could adopt a case–control methodology to understand the differences between those individuals who achieve success and those who are unable to overcome barriers. it is urgently important to understand what factors make the difference, and where the levers of success are amenable to government or donor interventions. moreover, this study only included people with sensory and physical impairments. it would be important to conduct specific studies of people with mental health conditions and people with intellectual disabilities who are flourishing, in order to reveal what factors account for their success. there are risks associated with reporting these success stories. for example, the stereotype of failing africans with disabilities could be replaced by contrasting stereotype of ‘super crip’ courageous africans with disabilities overcoming adversity. a reaction could also be: if these individuals are succeeding thanks to their own efforts, why cannot other individuals with disabilities do likewise? this is why it is important to understand success not just in terms of individual resilience but also in terms of structural factors that enable individuals to achieve. rather than shallow stereotypes, offering the full range of complex stories of real individuals counters this one-dimensional representation. the stories shared here suggest that investing in people with disabilities, and in barrier removal efforts in education, employment and the wider environment makes good sense, in terms of economic development. for example, the ugandan government policy of financing university enrolment of students with disabilities appears to have increased the likelihood of ugandans with disabilities having degrees, as compared to persons with disabilities from neighbouring countries. just as other evidence from the non-disabled population shows individuals and families succeeding in escaping poverty (krishna et al. 2006; lawson, mckay & okidi 2006). it was also evident from these data that some determined people with disabilities in kenya, uganda and zambia were succeeding, against considerable odds, in enjoying success on an equal basis with others. these success stories may still be minority experiences, but they can contribute to challenging the negativity and prejudice that surrounds disability in africa, and indeed other developing countries. the goal of governments and other development actors should now be to implement interventions that address the many barriers that prevent more people with disabilities achieving success. acknowledgements this research project was part of ucl/leonard cheshire disability ‘bridging the gap: disability and development in southern africa’ programme, led by prof. nora groce at the leonard cheshire disability-inclusive development centre at ucl, with support from maria kett and ellie cole. the authors thank all of them, particularly mary wickenden for support with ethics clearance and advice on analysis. they also thank richard bwalya, joyce olenja, julius omona and andrew state for supporting the research. the authors are also very grateful to anna horton for her invaluable help with the analysis. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.s. devised the project and conducted the first 33 interviews alongside colleagues. a.m., e.n. and j.s. conducted the remaining interviews in uganda, kenya and zambia, respectively. t.s. led the analysis and drafted the article; other 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n., browne, j., groce, n., kett, m. et al., 2010, disability in and around urban areas of sierra leone, leonard cheshire disability,london. trani, j.f. & loeb, m., 2012, ‘poverty and disability: a vicious circle? evidence from afghanistan and zambia’, journal of international development 24(suppl 1), s19–s52. https://doi.org/10.1002/jid.1709 tsemma, s.t., 2014, ‘economic discourses of disability in africa: an overview of lay and legislative narratives’, african disability rights yearbook 2, 121–147. world health organization, 2011, world report on disability, who, geneva. background conference presentation conclusions acknowledgements references about the author(s) sarah n. whitehead department of health sciences education, faculty of health sciences, university of cape town, cape town, south africa seyi l. amosun department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa theresa lorenzo department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa harsha kathard department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa citation whitehead, s.n., amosun, s.l., lorenzo, t. & kathard, h., 2025, ‘how can you be a doctor? ableism in the workplace’, african journal of disability 14(0), a1588. https://doi.org/10.4102/ajod.v14i0.1588 opinion paper how can you be a doctor? ableism in the workplace sarah n. whitehead, seyi l. amosun, theresa lorenzo, harsha kathard received: 30 sept. 2024; accepted: 14 feb. 2025; published: 31 mar. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. background meeting the challenges of disability inclusion is the collective responsibility of society, including medical doctors (battalova et al. 2020; lindsay et al. 2023; thomson & murray 2023). the shift to a more diverse workforce that includes physicians with disabilities is gaining considerable international traction (singh & meeks 2023), and communities are becoming receptive to engaging with medical doctors with disabilities (jarus et al. 2020; mogensen & hu 2019). to strengthen these achievements, the philosophy of disability inclusion must be adjusted from one where students and practitioners with disabilities are viewed as problematic and having to ‘overcome’ disability to one where institutions anticipate and welcome them in recognition of a diverse community (fitzpatrick & barrett 2023; singh & meeks 2023). medical professionals with disabilities still face challenges in the workplace (jarus et al. 2023; lindsay et al. 2023; rimmer 2020), and some medical associations have taken steps to ensure appropriate accommodation is provided. for example, the canadian society of physician leaders (munro, quon & gartke 2021), the american medical association (waliany 2016), the british medical association (rimmer 2020) and the general medical council of the united kingdom (mogensen & hu 2019) are developing principles that value these practitioners with recommendations that promote their reasonable accommodation and provide them with equitable opportunities. the south african medical association (sama) represents the interests of medical doctors, yet how this commitment enhances the provision of reasonable accommodation to their members with disabilities is unclear (suich & schneider 2022). ‘is ableism still entrenched in the medical profession in south africa?’ (whitehead et al. 2024) is the title of an article in which dr whitehead (a qualified and registered medical practitioner) described some of her experiences as a student and a practitioner. this publication triggered an invitation to present at an ethics conference for medical practitioners in south africa, hoping to raise awareness about disability among fellow medical practitioners. conference presentation in this opinion paper the authors share the presentation prepared by dr whitehead for the ethics symposium, held at the centre for diabetes and endocrinology on 23 august 2024, johannesburg to assist sama and the general society in understanding and becoming more aware of disability. when i was first asked to talk today, i knew it was a huge honour to be asked but i was not sure it was something i could practically do. i took some time to think about it. i realised it was a golden opportunity to raise awareness about disability inclusion and hopefully cause some shifts in the behaviour and attitudes of those of you here today. so here i am, ready to give this a go. as a person with a disability, i think that in many instances members of the medical profession struggle in interactions with patients with disability. as a doctor with a disability, though aware that doctors may feel overwhelmed by the demands of practising medicine in general (lagu et al. 2022), i feel that the medical profession still fails to maintain an unbiased and non-judgmental attitude towards colleagues with disabilities. these additional demands include improving the education of clinicians about the care of persons with disabilities and removing structural barriers in the health care delivery system. i do not make these statements lightly. i have plenty of lived experience to legitimise my concerns about my profession. whilst i was doing my phd, i came across multiple pieces of evidence emphasising that medicine, at its core, is meant to be a caring profession devoid of bias and judgment towards the members of society with whom the profession interacts (trzeciak, mazzarelli & booker 2019). as a doctor, i believe that i have a right to be very honest about my profession. as professionals, we generally do well in following the ideals mentioned by trzeciak et al (2019) when it comes to our interactions with most of our patients. i am aware that some doctors try to practise disability-inclusive medicine. i also know that in almost all of the cases where doctors fail to practise disability-inclusive medicine with both patients and colleagues with disabilities, there is no malicious intent. their inability to be fully inclusive stems more from a lack of awareness and from deep-seated unconscious bias which is rooted in a phenomenon termed ableism. ableism is the discrimination of and social prejudice against people with disabilities based on the belief that able-bodied people are superior, that disabled people require ‘fixing’, and defines people by their disability (dekker 2022; lindsay et al. 2023). as a person with a disability, i have experienced my fair share of ableism from many people within society but perhaps the harshest forms of ableism that i have encountered have come from within the medical profession. i want to again stress that this is not meant to be a pity party, nor am i setting out to unfairly lambast the profession. being on the receiving end of ableism is tough and can be hurtful but as i have said, most ableist behaviour is not done with any conscious malice. through sharing some of my experiences, i’m trying to raise everyone’s conscious awareness about such behaviour and the negative impact it can have. i have been a doctor for 14 years and i have never had to deal with the exact words of the question in the title of my talk, ‘how can you be a doctor?’ i have however had to manage situations where my ability to be a doctor has been questioned in other ways. one such situation happened roughly 7 years after i qualified. i remember walking into the ward of the rehab unit where i worked. i was using my walker and had my stethoscope around my neck. there was a man with one of my rehab patients who i had never met but i heard my patient call him a doctor. this doctor saw me talking to a nurse, came towards me, put his hands on my stethoscope that was around my neck, and said ‘what are you doing with this?’ when that doctor grabbed my stethoscope and asked what i was doing with it, he immediately defined me by the disability he saw the walking challenges and that i was using a walker. he was essentially placing me in a box with one label of disability on it and saying that i belong in the confines of that box only. his actions neglected to take into account that my disability is just one aspect of the multiple aspects that make up the person that i am. i would love to say that i fired off a witty and sharp response to this question, but the reality is that i was completely shocked and speechless. i managed to get out, ‘i am a doctor’. i kept my emotions in check until he left my ward and then i collapsed in tears. i remember thinking, ‘even if i was a confused patient who had somehow found a stethoscope and thought that i was a doctor, you do not treat another human being like that’. it wasn’t until a few years after this incident when i was writing my phd thesis, that i developed the skills and vocabulary to consider the impact of this behaviour and the other forms of ableism in the workplace that i have experienced. i think i am quite a mentally and emotionally strong person, but that incident did knock my confidence in being a doctor. i’m incredibly lucky to have established a wonderful support structure, that affirmed my being a doctor. my rehab medicine doctor colleague defended me in an email to this doctor who questioned my identity in this rather inhumane manner saying amongst other things, ‘don’t forget that dr whitehead earned her medical degree in the same way you did!’ the e-mail statement speaks to the belief that many people have about disability. the belief is that if a disability is present regardless of the type then the individual must be intellectually challenged as well. this belief along with other forms of ableist behaviour is based on predetermined beliefs and assumptions about disability. the limiting effects of ableism are bidirectional. it limits the expression of the identity of the person with a disability beyond their disability, but it is also limiting to the person enacting the ableism, in terms of interpersonal growth and introspection. medical professionals deal with human beings from all walks of life, which includes people with disabilities. my phd research showed that there is a global call for healthcare to find ways to ensure better inclusion of people with disabilities and to afford them quality healthcare. this inclusion should not be limited to patients with disabilities. that in itself is ableism. we should be actively seeking out ways to include people with disabilities as our medical professional colleagues as well. in closing, if you focus only on the disability, you become blind to the potential abilities of the individual with the disability. in my case, i have the same theoretical knowledge that a medical degree gives any graduate, but i have a lived experience of disability which sets me apart from many of my medical colleagues. this lived experience allows me to develop a quick, honest and very real rapport with my patients. recognition and celebration of this ability by my physical rehabilitation medicine colleagues helped me find a field of medicine where i felt accepted and valued. so, i ask that you become more aware of your behaviour towards people with disabilities. don’t be so quick to judge or assume anything. take a bit of time to get to know the person with a disability and their abilities. don’t define them based on their disability. rather encourage and allow their abilities to define them. conclusions this opinion paper describes dr whitehead’s experiences as a medical practitioner, confirming that ableism is still a challenge that persons with disabilities face in general. the sama’s efforts to improve the knowledge and attitudes of doctors about disability should be intentional in manifesting empathy and respect to ensure appropriate accommodation is provided to their patients and colleagues. acknowledgements this opinion paper is based on an article that was presented at the centre for diabetes and endocrinology, ethics symposium 2024. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.n.w., s.l.a., t.l. and h.k. conceptualised the idea. s.n.w. and s.l. drafted the article. t.l. and h.k. made substantial contributions to the article. s.n.w., s.l.a., t.l. and h.k. assisted with editing and finalising. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the author declares that all data that support this research article and findings are available in this article and its references. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s results, findings, and content. references battalova, a., bulk, l., nimmon, l., hole, r., krupa, t., lee, m. et al., 2020, ‘“i can understand where they’re coming from”: how clinicians’ disability experiences shape their interaction with clients’, qualitative health research 30(13), 2064–2076. https://doi.org/10.1177/1049732320922193 dekker, s., 2022, when you have a physical disability, the world is a very unaccommodating place, viewed 05 february 2024, from https://www.irishtimes.com/health/your-wellness/2022/07/12/sacha-dekker-july-is-disability-pride-month-here-is-why-we-celebrate-it/. fitzpatrick, s. & barrett, d., 2023, ‘disability inclusion in medical education: towards a quality improvement approach’, medical education 57(1), 17–20. https://doi.org/10.1111/medu.14952 jarus, t., bezati, r., trivett, s., lee, m., bulk, l.y., battalova, a. et al., 2020, ‘professionalism and disabled clinicians: the client’s perspective’, disability & society 35(7), 1085–1102. https://doi.org/10.1080/09687599.2019.1669436 jarus, t., krupa, t., mayer, y., battalova, a., bulk, l., lee, m. et al., 2023, ‘negotiating legitimacy and belonging: disabled students’ and practitioners’ experience’, medical education 57(6), 535–547. https://doi.org/10.1111/medu.15002 lagu, t., haywood, c., reimold, k., dejong, c., walker sterling, r. & iezzoni, l.i., 2022, ‘“i am not the doctor for you”: physicians’ attitudes about caring for people with disabilities: study examines physician attitudes about caring for people with disabilities’, health affairs 41(10), 1387–1395. https://doi.org/10.1377/hlthaff.2022.00475 lindsay, s., fuentes, k., ragunathan, s., lamaj, l. & dyson, j., 2023, ‘ableism within health care professions: a systematic review of the experiences and impact of discrimination against health care providers with disabilities’, disability and rehabilitation 45(17), 2715–2731. https://doi.org/10.1080/09638288.2022.2107086 mogensen, l. & hu, w., 2019, ‘“a doctor who really knows…”: a survey of community perspectives on medical students and practitioners with disability’, bmc medical education 19, 288. https://doi.org/10.1186/s12909-019-1715-7 munro, c., quon, m. & gartke, k., 2021, ‘fostering inclusion of physicians with disabilities at the ottawa hospital’, canadian journal of physician leadership 8(1), 11–14. rimmer, a., 2020, ‘disabled doctors are not getting the workplace adjustments they need, research finds’, bmj: british medical journal 370, m3189. https://doi.org/10.1136/bmj.m3189 singh, s. & meeks, l.m., 2023, ‘disability inclusion in medical education: towards a quality improvement approach’, medical education 57(1), 102–107. https://doi.org/10.1111/medu.14878 suich, h. & schneider, m., 2022, ‘monitoring disability inclusion: setting a baseline for south africa’, african journal of disability 11, 1020. https://doi.org/10.4102/ajod.v11i0.1020 thomson, a.e. & winsor murray, j., 2023, ‘mental health nurses who experience disabilities: adapting to workplace barriers’, issues in mental health nursing 44(12), 1179–1187. https://doi.org/10.1080/01612840.2023.2266849 trzeciak, s., mazzarelli, a. & booker, c., 2019, compassionomics: the revolutionary scientific evidence that caring makes a difference, p. 375, studer group, pensacola, fl. waliany, s., 2016, ‘health professionals with disabilities: motivating inclusiveness and representation’, ama journal of ethics 18(10), 971–974. https://doi.org/10.1001/journalofethics.2016.18.10.fred1-1610 whitehead, s.n., kathard, h., lorenzo, t. & amosun, s.l., 2024, ‘is ableism still entrenched in the medical profession in south africa?’, south african medical journal 114(2), 59–59. abstract introduction methods results discussion conclusion acknowledgements references about the author(s) yvonne paul department of sport and dental therapy, faculty of health science, tshwane university of technology, cape town, south africa terry j. ellapen school of biokinetics, recreation and sport, physical activity sport and recreation (phasrec), north-west university, potchefstroom, south africa marco barnard school of biokinetics, recreation and sport, physical activity sport and recreation (phasrec), north-west university, potchefstroom, south africa henriëtte v. hammill school of biokinetics, recreation and sport, physical activity sport and recreation (phasrec), north-west university, potchefstroom, south africa mariëtte swanepoel school of biokinetics, recreation and sport, physical activity sport and recreation (phasrec), north-west university, potchefstroom, south africa citation paul, y., ellapen, t.j., barnard, m., hammill, h.v. & swanepoel, m., 2019, ‘the health benefits of exercise therapy for patients with down syndrome: a systematic review’, african journal of disability 8(0), a576. https://doi.org/10.4102/ajod.v8i0.576 review article the health benefits of exercise therapy for patients with down syndrome: a systematic review yvonne paul, terry j. ellapen, marco barnard, henriëtte v. hammill, mariëtte swanepoel received: 25 sept. 2018; accepted: 26 july 2019; published: 23 oct. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: many patients with down syndrome (pwds) have poor cardiometabolic risk profiles, aerobic capacities and weak hypotonic muscles, primarily because of physical inactivity and poor diet. objectives: this study discusses the benefits of exercise therapy on body composition, aerobic capacity, muscle strength, proprioception and cardiometabolic profiles of pwds. methods: a literature review using the crossref metadatabase, following preferred reporting items for systematic reviews and meta-analyses (prisma), focusing on the period 2007-2018, was undertaken. each record was judged adopting the modified downs and black appraisal scale. the literature investigation identified 15 701 records. records were excluded if they were published before 2007, pertained to the impact of exercise on intellectual disabilities beyond down syndrome or the impact of medical, pharmaceutical, nutrition and psychological interventions among pwds and were published in languages besides english. nineteen articles were synthesised into this commentary. results: pwds have a heightened cardiometabolic risk profile and high oxidative stress associated with elevated insulin resistance, poor insulin sensitivity, atherosclerosis and hypertension. pwds have low aerobic capacity (vo2max), peak heart rates, muscle strength, agility and balance. regular physical activity is beneficial to improve their vo2max and muscle strength. moreover, regular physical activity reduces lipid peroxidation and arterial cell wall damage, the pathogenesis of atheroma is limited. conclusion: exercise therapy compliance seems to have a positive impact on the cardiometabolic risk profile, muscle strength and aerobic work capacity of pwds. nonetheless, additional vigorous experimental investigations are necessary to better understand the effect of exercise therapy on the aerobic, strength, proprioception and cardiometabolic risk profile of pwds. keywords: cardiometabolic; down syndrome; exercise; muscle strength; proprioception; obesity. introduction the longevity of patients with down syndrome (pwds) has chronologically extended over the course of the last century (vis et al. 2009). in 1929, the average lifespan of pwds was 9 years; this later increased to 12 years (1949), and then progressively extended to 35 years (1982) and reaching 55 years (2007) a decade ago (barnhart & connolly 2007). the increased longevity among pwds is quite possibly because of improved medical and pharmaceutical management (duffels et al. 2009). vis et al. (2009) reported that one to two babies out of every 1000 live births are identified with down syndrome (ds). the increased longevity of pwds is of concern as this increases the demands placed on parents and caregivers who act as resident guardians (barnhart & connolly 2007). because of the generally poor cardiometabolic risk profile and aerobic capacity of pwds, they are doubly dependent on their caregivers for whom the burden of care only increases as both caregivers and patients age. patients with down syndrome have an increased risk of acquiring secondary physiological pathologies due primarily to a physically inactive lifestyle and poor nutritional choices (heller et al. 2008). these pathophysiological conditions include cardiovascular diseases, pulmonary hypoplasia, muscle hypotonia, osteoporosis, arthritis, osteoarthritis, diabetes mellitus and obesity (heller et al. 2008). muscle atrophy as well as poor muscle strength and endurance are co-maladies of physically inactive (sedentary) living and are frequently observed in pwds (dishman, heath & lee 2013). heller et al. (2008) reported that the average longevity of pwds is 55 years – 11 years fewer than individuals with other intellectual disabilities and 15 years shorter than the general populace. rimmer, braddock and fujiura (1995) reported that only 10% of intellectually disabled individuals engage in a minimum of 3 days of physical activity weekly; the sedentary lifestyle adopted by the majority of intellectually disabled individuals adversely contributes to their poor fitness status, further contributing to the higher rates of obesity that are found among pwds. the cardiovascular diseases that have been identified among pwds include mitral value prolapse, endocarditis, atherosclerosis and congestive heart failure (vis et al. 2009). patients with down syndrome have an incidence of obesity that ranges from 31% to 47%; the high level of obesity has been associated with their sedentary lifestyle and poor eating habits (vis et al. 2009). abnormally high lipid profiles among pwds are correlated with atherosclerosis (wallen et al. 2009). the physically inactive lifestyle adopted by pwds is furthermore associated with lower cardiorespiratory capacity, higher adiposity and reciprocal lower muscle mass, poor muscular strength, endurance, hypotonic muscles, and lower sympathetic nervous system response to physical activity and exercise (izquierdo-gomez et al. 2015). although a plethora of literature extolling the virtues of adopting a physically active lifestyle exists, few review articles describing the empirical findings of the benefits of physical activity and exercise among individuals with ds have been published (2007–2017). the commentary offered by barnhart and connolly (2007) suggests that as pwds age they have higher cardiometabolic risk profiles, and that, consequently, the adoption of regular physical activity would be beneficial. the study undertaken by barnhart and connolly (2007) is, however, limited in so far as they failed to describe their literature gathering technique. a further limitation of the study lies in the absence of an explanation of the manner in which exercise could improve the health of pwds. similarly, the clinical commentary of fernhall, mendonca and bynard (2013) does not reflect the manner in which the literature was sourced; the authors, however, postulate that poor aerobic capacity in pwds is attributed to their autonomic dysfunction. the systematic literature review by bertapelli et al. (2016) focused on the prevalence of obesity among young pwds, and upon interventions within this population, noting the high occurrence of obesity among young pwds. they further highlighted the inconsistent impact of interventions that sought to curtail the obesity of young pwds. however, bertapelli et al. (2016) only reviewed five exercise and physical interventions, unlike this commentary, which has identified 11. this review sought to determine whether subsequent experimental studies had been conducted after the bertapelli et al. (2016) review, and whether these studies provided evidence to substantiate the claim that regular physical activity decreases obesity among pwds, thereby improving their cardiometabolic risk profile. the present review further sought to determine whether exercise therapy improved the cardiometabolic risk profile of pwds, whereas shields et al. (2018) focused on the impact of exercise induced oxidative stress on pwds. the findings detailed by shields et al. (2018) did not relate to the cardiometabolic risk profile of pwds. the aforementioned empirical studies were reviewed according to mill’s canons to ascertain the vigour of causal relationship between regular exercise interventions and improved health among the pwds. this review offers two unique characteristics differentiating it from previous reviews: (1) a description of the pathogenesis of obesity, diabetes mellitus and atherosclerosis common among pwds, and (2) a description of the physiological mechanism of how regular aerobic exercise and physical activity improve the cardiometabolic profile of pwds. methods the literature review followed the preferred reporting items for systematic reviews and meta-analyses (prisma) practices. this was done to ensure that all pertinent literature was sourced and synthesised into the drafting of this commentary. literature surveillance an exploration of peer-reviewed literature within the crossref metadatabase was completed. the crossref metadatabase is an educational databank, which is composed of the pubmed, science direct, ebscohost, cinahl and google scholar search engines (figure 1). the keywords used in the literature search were down syndrome, exercise, cardiometabolic, muscle strength, agility, balance, proprioception and obesity. the selection criteria of the literature were accomplished in the subsequent three phases: (1) title review, (2) abstract review and (3) full text review. the records were screened by t.j.e. and barnard m.b. figure 1: conceptualisation of the review process. admissibility standards participants were records pertaining to pwds and exercise. the interventions were the recorded results of exercise interventions on the cardiometabolic risk profile, aerobic capacity and muscle strength of pwds. applicable findings included (1) the influence of exercise on the cardiometabolic profile of pwds, (2) the influence of exercise on the muscle strength and endurance of pwds and (3) aerobic capacity (the effect of exercise on the ease of performing daily activity of pwds). the elimination benchmarks included (1) the literature preceding 2007, (2) evidence relating to exercise with regard to individuals with other intellectual disabilities, (3) the literature related to the impact of medical, pharmaceutical, nutritional and psychological interventions among pwds, (4) non-english articles and (5) the literature concerning the impact of exercise on physiological, cognitive and behavioural aspects outside the domain of the prescribed outcome interests of this article. evaluation of records the literature was reviewed according to the suitability of the title and adherence of each article to the inclusion criteria. the merit of each record was evaluated using a modified downs and black appraisal scale which inspects the value of randomised controlled trials, non-randomised, pseudo-randomised controlled articles, comparative studies with and without concurrent controls, and case series and/or studies with either post-test or pre-test/post-test outcomes (downs & black 1998) (tables 1 and 2). these measures were undertaken to eradicate researcher bias. the modified checklist comprises 16 questions with a maximum score of 16 points. answers were given a score of either 0 (no) or 1 (yes). the questions adopted from the downs and black appraisal scale were 1, 3, 4, 5, 6, 10, 11, 12, 13, 14, 18, 20, 21, 22, 23 and 27. these questions were categorised into four subdivisions, which evaluate the whole value of each record (table 2). the categorising included reporting prowess (n = 6 questions), external validity (n = 3 questions), internal validity (n = 6 questions) and power of significance (n = 1 questions) (downs & black 1998). all authors were able to query the scoring of each record and would then discuss the scores adopting the jointly accepted score. the summation of these scores was then transformed to a percentage to rate the overall value of the individual records (downs & black 1998). the overall value of the records was categorised using a scale demarcated as follows: < 50% (weak), 50% – 69% (fair), 70% – 79% (good) and ≥ 80% (very good) (downs & black 1998). the mean rating of the selected papers was fair. table 1: appraisal of the hierarchy of records. table 2: evaluation of records. ethical consideration this article is an overview or clinical commentary; therefore, no subjects were involved. results a total of 1331 participants were enrolled across the 19 studies with a mean age of 18.1 ± 6.8 years, a mean body mass of 61.8 kg ± 13.3 kg, a mean height of 1.53 ± 0.09 m and a mean bmi of 25.2 kg/m2 ± 4.0 kg/m2. the 19 studies comprised 2 systematic reviews, 1 case study, 10 observational cross-sectional and 6 randomised controlled trials (table 1). eleven studies reviewed the influence of exercise and physical activity on the health status of pwds. regular aerobic exercises reduced lipid peroxidation, oxidative stress, arterial cell wall damage and body fat all while enhancing insulin sensitivity, which was favourably associated with lowering the metabolic risk profile of participants. regular muscle strengthening improved lower limb strength and improved daily habitual activities (walking upstairs and grocery shelving), motor skills and posture (table 3). table 3: sequential summary of the characteristics and conclusions of the records (n = 19). discussion the discussion of findings will follow the interest outcomes of the literature search, namely the impact of exercise on the cardiometabolic profile of pwds, as well as on their muscle strength, agility and balance. the discussion of the effects of exercise on the cardiometabolic profile of pwds will detail the role of oxidative stress on the pathogenesis of diabetes mellitus and atherosclerosis and underline the favourable impact of exercise on the improvement of the cardiometabolic profile of pwds. finally, the articles synthesised into this commentary will be reviewed according to mill’s canons (dishman et al. 2013) so as to ascertain the strength of the relationship between exercise and the change in health status of pwds. impact of exercise on the cardiometabolic profile of patients with down syndrome patients with down syndrome have a high incidence of metabolic syndrome, which has been related to heightened cardiometabolic risk profiles (diabetes mellitus, poor insulin sensitivity and high insulin resistance, obesity, atherosclerosis, high low-density lipoprotein cholesterol, hypertension and poor aerobic capacity) (wallen et al. 2009). furthermore, high oxidative stress has been related to elevated insulin resistance, poor insulin sensitivity, atherosclerosis and hypertension (flore et al. 2008). oxidative stress impairs β-cell function, which reduces the production of insulin by impairing glucose-stimulated insulin secretion, thereby creating a state of hyperglycaemia, which ultimately leads to the development of diabetes mellitus (tangvarasittichai 2015). abnormal lipid metabolism has been related to premature risk for the development of atherosclerosis among pwds (vis et al. 2009). aguiar et al. (2008) and silva et al. (2017) reported that consistent physical activity or exercise lowers body fat, suggesting that regular exercise and physical activity can improve the cardiometabolic risk profile of pwds. one of the principal benefits of regular aerobic exercises is the use of fats (lipids) for energy, reducing fat content and thereby improving the individual’s cardiometabolic risk profile (durstine et al. 2011). a further benefit of regular aerobic exercise is the earlier use of lipids, thereby conserving muscle and liver glycogen stores, which has a carbohydrate sparing effect. the use of lipids as an energy fuel yields more atp than the decomposition of carbohydrates. the catabolism of lipids occurs through the process of lipolysis. the more lipids used, the greater the reduction in fat stores, thereby lowering body fat (mcardle, katch & katch 2000). ulrich et al. (2011) reported that pwds who exercise regularly reduce body fat, but the authors did not explain the exercise induced physiological mechanism behind the fat loss and how this relates to obesity. aguiar et al. (2008) reported on the oxidative stress benefits of physical activity, which may positively influence unhealthy cardiometabolic risk profiles, but did specifically explain its use in combating obesity. the study undertaken by aguiar et al. (2008) was not a randomised control, thereby limiting the significance of the findings and ulrich et al. (2011) in a single randomised controlled study further showed the paucity of validation in the aforementioned studies. more empirical randomised controlled studies that discuss the biochemical exercise induced mechanism of fat loss relating to reduction in obesity levels among pwds are therefore required to validate these findings. such studies would further encourage pwds and their caregivers to become involved in regular physical activity and exercise. impact of aerobic exercise on the pathogenesis of atherosclerosis patients with down syndrome have been identified as having high oxidative stress, which serves as a pathogenic mechanism for the development of atherosclerosis, neurodegeneration, cell aging, cancer and immunological disorders (ordonez & rosety-rodriguez 2007). oxidative injuries in cardiovascular tissue such as arteries provide opportunities for the development of atheroma (cholesterol plaque), facilitating the pathogenesis of atherosclerosis (the build-up of low density lipoprotein cholesterol, fat, triglycerides and macrophages forming an atheroma/plaque, which reduces blood flow) and arteriosclerosis (the process whereby the arterial walls thicken and harden, losing their elasticity and reducing blood flow) (tangvarasittichai 2015). regular endurance exercise and physical activity decrease lipid peroxidation and arterial cell wall damage, which limits the pathogenesis of atheroma (rosety-rodriguez et al. 2010). regular exercise furthermore facilitates the release of nitrate oxide, vasodilating blood vessels and thereby enhancing blood flow (durstine et al. 2011). these findings demonstrate the benefit of regular aerobic exercise for the reduction of the cardiometabolic risk profile of pwds. however, more experimental investigations are required to validate the findings of rodriguez et al. (2010), among pwds. aerobic capacity of patients with down syndrome fernhall et al. (2013) and wee et al. (2015) indicated that pwds have low aerobic capacity, characterised by low vo2max and peak heart rates. fernhall et al. (2013) postulate that autonomic dysfunction is the principal contributor to the poor aerobic capacity and maximal oxygen consumption of pwds, which may lead to their poor cardiometabolic risk profiles. the poor catecholamine (epinephrine and norepinephrine) response to peak exercise among pwds suggests that this may be the principal reason for the low peak heart rates and poor aerobic capacity during exercise of pwds (fernhall et al. 2009). shields et al. (2017) reported that pwds who were aerobically fitter had smaller waist circumferences and a lower bmi. although the evidence provided by shields et al. (2017) suggests that body composition is inversely associated with aerobic fitness, the research study design (observational) limits the significance of the findings. despite this, the findings of shields et al. (2017) nevertheless motivate exercise interventions for pwds. silva et al.’s (2017) study is the only randomised controlled study that was included in this review; the study demonstrates that regular aerobic exercise increased the aerobic capacity of pwds and thus warrants validation through more randomised controlled trials. although the physiological mechanism has been identified, more empirical investigations are required to determine the manner in which the aerobic capacity of pwds can be improved. this data can then, in turn, assist in the improvement of the cardiometabolic risk profile of pwds. the effect of exercise on the muscle strength, agility and balance of patients with down syndrome patients with down syndrome have poor muscle strength, agility and balance as compared to similarly age-matched peers (izquierdo-gomez et al. 2015). shields and taylor (2010) and gupta and singh (2011) reported that regular strengthening exercises improve the muscle strength of pwds. shields and taylor (2010) also demonstrated that the increase in muscle strength served to enhance both daily functional activities (such as walking upstairs with greater ease) and the performance of rudimentary tasks (such as packing shelves). gupta and singh (2011) illustrated that regular strength training improves muscle strength and proprioception (balance). however, gupta and singh (2011) did not explain how improved muscle strength was associated with improved balance. empirical investigations explaining the relationship between the improvement in muscle strength and the consequent improvement in balance in pwds are advised. silva et al. (2017) also reported that computer games (namely, the nintendo wii) assisted in increasing lower limb muscle strength, aerobic capacity and motor coordination. the merit of the above-mentioned studies is their randomised controlled design that validates each other’s findings: regular resistance trainingand physical activity-based electronic games do have the potential to improve muscle strength and balance, thereby providing daily functional benefits. the effects of different types of strength training and exercises, such as circuit training, swimming and basic plyometric drills on the health profile of pwds, should be investigated through randomised controlled trials. the adoption of alternate strengthening activities, such as circuit training, plyometric and swimming, will add variety to the exercise regime of pwds, thereby helping to maintain adherence to exercise therapy. furthermore, regular resistance training does have cardiometabolic benefits, which needs to be explored in the context of this particular population, in so far as obesity is associated with the development of diabetes mellitus. regular strength training has been reported to lower insulin resistance and improve insulin sensitivity, thereby improving the cardiometabolic profile of diabetic patients (durstine et al. 2011). although these findings are yet to be validated for pwds, they show promise in so far as strengthening can also serve to improve the cardiometabolic risk profiles of pwds. more empirical randomised controlled trails are, however, needed. over and above this, gupta and singh (2011) and berg et al. (2012) have documented that regular exercise can improve postural stability among pwds. strength of evidence supporting the beneficial effects of regular exercise in improving the cardiometabolic risk profile, muscle strength and proprioception of patients with down syndrome the authors adopted mill’s canons (dishman et al. 2013) to determine the strength of evidence supporting the causal inference relating to the impact of exercise interventions on chronic diseases. mill’s canons have the following five criteria: temporal sequence refers to the sequence of the exposure of the intervention, which must precede the change of the diseased condition within a sufficient time frame to make a plausible conclusion. ten of the 11 studies demonstrated that regular exercise improves the health status of pwds. six of these 11 studies focused on the effect of exercise on the cardiometabolic risk profile of pwds. five studies (83.3%) out of the six indicated that regular exercise improves the cardiometabolic risk profile of pwds (aguiar et al. 2008; ordonez & rosety-rodriguez 2007; ordonez et al. 2012; rosety-rodriguez et al. 2010; silva et al. 2017). of the five studies, two were randomised control studies (ordonez et al. 2012; silva et al. 2017) and three were observational cross-sectional studies (aguiar et al. 2008; ordonez & rosety-rodriguez 2007; rosety-rodriguez et al. 2010). four randomised control trials indicated that regular exercise improves the strength and proprioception of pwds, thereby addressing the patients’ hypotonic muscle deficits (gupta & singh 2011; lin & wuang 2010; shields & taylor 2010; silva et al. 2017). shields and taylor (2010) also associated increased muscle strength with improved daily functional activities such walking and packing shelves among pwds. two randomised controlled trials and one case study demonstrated that regular physical activity improves the postural stability of pwds (berg et al. 2012; gupta & singh 2011; ulrich et al. 2011). strength of association refers to the clinical meaningful difference between the disease and the intervention. ten of the 11 studies indicated a strong association between the exercise and physical activity interventions and improved cardiometabolic risk profile, strength, proprioception and postural balance (table 3). consistency of results refers to the consistent observation of the association between the outcome of the intervention and the disease. of the 11 studies reviewing the effect of regular exercise and physical activity on the health status of pwds, 10 indicated positive outcomes (90.9%) (table 3). biological plausibility refers to the clinical explanation of the observed outcome of the intervention in regard to disease. the 10 studies that showed positive outcomes described plausible explanations for these improvements (table 3). dose–response refers to the volume of intervention required to produce a specific outcome on the disease. there is, however, no consensus pertaining to the amount or volume of exercise and physical activity needed to produce beneficial outcomes. it is advised that further research investigating the dose–response concerning intensity, duration and frequency of exercise interventions and physical activity on pwds. this new research will help medical practitioners and exercise therapists determine the adequate dose response to exercise. conclusion clinical evidence has indicated that regular exercise benefits the health status of pwds with regard to improving their body composition, aerobic capacity, muscle strength, proprioception and postural stability. the benefits of augmented aerobic work capacity and body composition help to lower the cardiometabolic risk profile of pwds. however, more randomised controlled trials are needed to both determine the dose–response to exercise and validate these preliminary empirical findings. additional empirical randomised controlled studies, which discuss the biochemical exercise induced mechanism of fat loss relating to a reduction in obesity levels among pwds, are required to validate these findings. the effects of different types of exercises, such as circuit training, swimming and basic plyometric drills on the health profile of pwds, should be investigated through randomised controlled trials. this review showed that aerobic exercises were primarily selected to alter the cardiometabolic profile of pwds. resistance training has also improved the diabetic profile of patients, and this should be explored among pwds as well. acknowledgements the authors wish to acknowledge the study of ellapen et al. (2017) that reviewed the common upper limb injuries to wheelchair users and ellapen et al. (2018) that described the benefits of hydrotherapy to spinal cord injured patients. these studies serve as a catalyst for this article. competing interests the authors declare that no competing interests exist. authors’ contributions y.p., t.j.e., m.b., h.v.h. and m.s. were responsible for conceptualisation, data gathering and drafting of the article. y.p. was responsible for editing and payment of page fees. funding this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references aguiar, a.s., tuon, t., albuquerque, m.m., rocha, g.s., speck, a.e., dafre-rui, a.l. et al., 2008, ‘the exercise redox paradigm in 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cardio-metabolic risk factors among adolescents with intellectual disability’, acta pediatrica 98(5), 853–859. https://doi:10.1111/j.2227.2008.01197.x wee, s.o., pitetti, k.h., goulopoulou, s., collier, s.r., guerra, m. & baynard, t., 2015, ‘impact of obesity and down syndrome on peak heart rate and aerobic capacity in youths and adults’, research in developmental disabilities 36, 198–206. https://doi.org/10.1016/j.ridd.2014.10.002 article information authors: jacqui steadman1 chrisma pretorius2 affiliation: 1department of psychology, stellenbosch university, south africa correspondence to: chrisma pretorius postal address: stellenbosch university, department of psychology, private bag x1, matieland, stellenbosch, south africa dates: received: 06 may 2014 accepted: 17 sept. 2014 published: 21 nov. 2014 how to cite this article: steadman, j., pretorius, c., 2014, ‘the impact of an online facebook support group for people with multiple sclerosis on non-active users’, african journal of disability 3(1), art. #132, 10 pages. http://dx.doi.org/10.4102/ ajod.v3i1.132 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. the impact of an online facebook support group for people with multiple sclerosis on non-active users in this original research... open access • abstract • introduction • method    • research design    • participants and procedure    • data analysis    • contextualising the findings    • ensuring rigour • results    • facilitators       • emotional support       • informational support       • social companionship    • barriers       • emotional support       • informational support       • social companionship • discussion    • limitations and directions for future research • conclusion • acknowledgements    • competing interests    • authors’ contributions • references • footnote abstract top ↑ background: multiple sclerosis (ms) is a debilitating disease and there is little research on support networks for people with ms (pwms). more specifically, most studies on online support groups focus on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way.objectives: this study therefore aimed to explore the experiences of non-active users of an online facebook support group for pwms. emphasis was placed on the facilitators and the barriers that were associated with membership to this group. method: an exploratory qualitative research design was implemented, whereby thematic analysis was utilised to examine the ten semi-structured interviews that were conducted. results: several facilitators were acquired through the online support group; namely emotional support (constant source of support, exposure to negative aspects of the disease), informational support (group as a source of knowledge, quality of information) and social companionship (place of belonging). some barriers were also identified; namely emotional support (emotions lost online, response to messages, exposure to negative aspects of the disease), informational support (information posted on the group, misuse of group) and social companionship (non-active status) conclusion: these findings demonstrate that the non-active members of the online support group for pwms have valid reasons for their non-active membership status. more important, the findings suggest that the online facebook support group provided the group members with an important support network in the form of emotional support, informational support and social companionship, despite their non-active membership status or the barriers that have been identified. introduction top ↑ multiple sclerosis (ms) is a chronic inflammatory and degenerative disease that affects the central nervous system (cns) (boeschoten et al. 2012). ms is a relatively common disease, with a global prevalence rate that is on the rise (young 2011). in a 2008 study conducted by the world health organization and the multiple sclerosis international federation, it was estimated that the global prevalence rate of ms was 30 per 100 000 (dua & rompani 2008). the symptoms of ms are different for every person, depending on the location of lesions and the extent of damage in the cns, and symptoms often change over time as the disease progresses (mozo-dutton, simpson & boot 2012). the most common symptom of ms is fatigue, which often results in loss of employment and can lead to self-imposed social isolation (grytten & måseide 2006). the impairments associated with ms often result in limited physical activity and restricted social participation (uccelli et al. 2004). at present there is no cure for ms; however, there are medications that are able to slow down the progression of ms and ease its symptoms (reipert 2004). psychological treatment is important for people with ms (pwms) due to the high levels of anxiety and depression among these individuals (chalk 2007). though psychological treatment assists individuals to physically and mentally cope with ms, it has been found that social support assists individuals to cope emotionally (pretorius & joubert 2014; schwartz & frohner 2005). social support is thus an important resource for those with ms, as it often increases self-esteem, decreases depression and increases quality of life (pretorius & joubert 2014; schwartz & frohner 2005). peer support group programmes have become a popular means of providing social support to individuals who share similar difficulties, despair, diseases, and pain (uccelli et al. 2004). however, the apparent lack of research on suitable support networks for pwms, such as peer support groups, is concerning, since the disease has such a debilitating impact on the lives of so many individuals.traditionally these peer support groups consisted of personal face-to-face meetings where people have the opportunity to share their experiences and knowledge and to give and receive emotional support (droge, arnston & norton 1986). these face-to-face support groups typically comprise of people who have a diagnosis in common and operate on the premise that sharing information with individuals in similar situations can be beneficial without the presence of a healthcare professional (droge et al. 1986). while one of the goals of face-to-face ms support groups is to improve psychological health, this does not seem to be the case (wakefield, bickley & sani 2013). for example, uccelli et al. (2004) found that face-to-face support groups did not decrease levels of depression or increase quality of life for pwms. wakefield et al. (2013) conducted a study from a social identity approach and suggest that it is the level of subjective identification with a support group (rather than simply support group membership alone) that affects the mental health of pwms in a positive way. healthcare professionals often encourage ms patients to make use of face-to-face support groups, and there are ms societies across the globe who provide financial and human resources to organise, implement and maintain these groups (finlayson & cho 2011). however, limited studies have sought to investigate these ms support groups in terms of who utilises them, who no longer utilises them, and who desires to participate in them (finlayson & cho 2011). the use of online support groups is becoming more popular as the technology develops. an online support group is a type of support group that an individual can access on the internet through the use of any type of computer-mediated communication, such as a mobile phone, computer or laptop. it has been reported in 2007 that 36 million people in the united states of america (usa) are members of some or other online support group (coulson, buchanan & aubeeluck 2007). facebook is an example of one of the most popular places where online support groups can be found. online support groups enable individuals to engage in supportive interaction using listings, chat rooms, bulletin boards and personal email exchanges with others who share similar problems or challenges (barak, boniel-nissim & suler 2008; coulson et al. 2007). members of online support groups often utilise these groups to exchange different kinds of support, and studies suggest that informational as well as emotional support are the most frequently provided (coulson 2005; ravert, hancock & ingersoll 2004). network support also emerges, whereby members use the support group as a common meeting ground and where all issues relating to a specific illness or problem can be discussed (coulson et al. 2007). although the internet is nowadays an important source of information and emotional support for many people, there seems to be a paucity of research focussing on online support groups. research that has addressed the impact of online support groups thus far have focussed on more well-known conditions such as cancer, arthritis, parkinson’s disease, huntington’s disease, irritable bowel syndrome, fibromyalgia and human immunodeficiency virus/acquired immunodeficiency syndrome (hiv/aids) (attard & coulson 2012; coulson 2005; coulson et al. 2007; høybye, johansen & tjørnhøj-thomsen 2005; mo & coulson 2010; van uden-kraan et al. 2008b), whilst more uncommon diseases such as ms have received little attention (coulson et al. 2007). several studies have found that those who utilise online support groups benefit in several ways; however, most studies on online support groups have focused on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way (ranging from 45.5% – 90% of group members) (buchanan & coulson 2007; coulson 2005; nonnecke, andrews & preece 2006; sun, rau & ma 2014; van uden-kraan et al. 2008a). it is clear from the literature that descriptions of non-active members of online support groups (also known as lurkers) vary. dictionary.com (n.d.) defines a lurker broadly as: ‘one of the “silent majorities” in an electronic forum, one who posts occasionally or not at all, but is known to read the group’s postings regularly.’ some studies define non-active members (lurkers) as the members who never post in an online group (neelen & fetter 2010; nonnecke et al. 2006), or members who post messages only once in a while (golder & donath 2004). other studies refer to non-active members (lurkers) as the members who post three or fewer messages from the beginning or users who never posted messages in the last four months (ganley, moser & groenewegen 2012). it seems as if the main difference between active members (posters) and non-active members (lurkers) is that active members (posters) make contributions to the group by posting regularly, while non-active members (lurkers) stay silent most of the time. a recent literature review by sun et al. (2014) emphasises that different methods exist to identify and describe non-active members of online groups (lurkers) and depend on the nature of the online group and the purpose of the study. at present it is unclear whether non-active members benefit to the same extent that active members do, as there have been limited studies on this topic and results have been inconclusive (nonnecke et al. 2006; sun et al. 2014; van uden-kraan et al. 2008a). a study that examined the differences between empowerment outcomes for active and non-active posters of online support groups for individuals with fibromyalgia, breast cancer and arthritis was conducted by van uden-kraan et al. (2008b). the findings indicated that non-active members tend to benefit in similar areas compared to the active members of support groups. mo and coulson (2010) found that non-active members in an online support group for hiv and aids did not differ from active posters in their levels of care, self-efficacy, optimism, depression, and loneliness. they also found that non-active members felt more energetic than active posters. in contrast, barak et al. (2008) found that active members experience greater emotional relief compared to non-active members. the available literature suggests that there are several advantages of online support groups (coulson et al. 2007). these groups are not subject to spatial, geographical and temporal constraints; participants are able to post messages at their own pace. these groups bring together a variety of individuals, offering different perspectives, experiences and opinions. furthermore, participation on an online support group affords the individual more anonymity than face-to-face support groups (coulson 2005; finn 1999; white & dorman 2001). online support groups also allow a learning opportunity for new members, relatives, professionals and friends (finn 1999). even the non-active members of the support group (those who do not participate often, but read messages regularly) are able to benefit from the group without disrupting the group process (finn 1999). members of online support groups frequently use these groups to exchange support and research suggests that emotional and informational support are the most common forms of support reported by group members (coulson 2005; malcomson, lowe-strong & dunwoody 2008; ravert et al. 2004; van uden-kraan et al. 2008b). online support groups do not only seem to contribute to the empowerment of individuals with chronic illnesses, but also result in a decrease in social isolation and facilitate new social networks (høybye et al. 2005; malcomson et al. 2008). on the other hand, the disadvantages of using online support groups are that they may take time away from face-to-face social contact and users may become dependent upon them (barak et al. 2008; finn 1999). the use of online resources is often only available to those with computer skills and access to computers, which excludes the poor, undereducated and possibly the elderly (finn 1999). furthermore, a study conducted by im et al. (2007) found that members of online support groups are often a select group consisting of white, middle-aged, middle class, well-educated individuals. there is also concern regarding the quality of information being provided by members of the online support group (finn 1999; van uden-kraan et al. 2008a). it is clear from the literature that limited research has been conducted on face-to-face support groups for people with ms (uccelli et al. 2004), while there appears to be a paucity of research focussing on online support groups for pwms and even less research on the non-active users in these groups. as discussed, uccelli et al. (2004) found that traditional face-to-face support groups did not make a significant contribution to a decrease in depression or an increase in the quality of life in pwms. a possible explanation for this is that, although pwms identify social support as an important resource, this type of support may not always fulfil the needs of pwms. pwms face many challenges that can make access to face-to-face support groups difficult. these challenges relate to the symptoms that these individuals present with and can include problems with mobility and fatigue, cognitive impairments and problems with bladder and bowel control. according to coulson et al. (2007), it is possible that online support groups can provide individuals with chronic illnesses with the same type of support as face-to-face support groups, but without the potential challenges that have been identified. when the existing literature regarding the advantages of online support groups is considered, it can be speculated that the non-active members of the online support group for pwms, which comprise the majority of the support group, may benefit from the online support group in different ways. the online support group can potentially address the physical problems with fatigue and mobility that are commonly reported by pwms, because these individuals can be part of an online support group in the comfort of their own home without any geographical boundaries. it is also possible that membership of this group could address the need for the emotional support and social isolation that is commonly reported by these individuals. due to the paucity of research on online support groups for pwms, the above-mentioned examples of potential benefits for these individuals are based on speculation when the number of challenges that pwms face and the benefits of online support groups are considered (coulson et al. 2007; finn 1999; høybye et al. 2005; ravert et al. 2004; white & dorman 2001). furthermore, given the exponential growth in the use of online support groups, it is important to gather accurate information about the quality and value of this type of support for pwms. this study will hopefully contribute to the limited knowledge that is currently available on this topic. therefore, the aim of this exploratory study was to examine the experiences of non-active members of an online facebook support group for pwms by exploring the facilitators and barriers that are associated with membership of this group. a facilitator refers to any factor that makes a process or situation easier to deal with, while a barrier has been defined as any situation or obstacle that needs to be overcome in order to make progress (stevenson 2010). for the purpose of the present study, a facilitator will encompass any support, services, or processes that are helpful to the participants of this study, while a barrier will refer to any aspect that makes the experience of being part of the online facebook support group challenging. method top ↑ research design an explorative qualitative research design was utilised to investigate the impact of an online support group for ms on non-active users. individual, in-depth semistructured interviews were implemented as the data collection method. participants and procedure the participants were 10 individuals who were all part of an online facebook support group for pwms. the sample consisted of 10 females, aged between 28 years and 55 years (median = 50). the duration since ms diagnosis ranged from 2 years – 25 years (m = 12.65; sd = 8.77), and the period of membership of the online support group ranged from 2 months to 5 years (m = 2.12; sd = 1.07). there were vast differences between participants in the years since diagnosis as well as the duration of membership of the online support group, which resulted in a heterogeneous sample. ms is a complex disease that is diverse in nature, and it impacts various individuals in different ways. it thus seemed fitting to examine the experiences of a heterogeneous sample that might be a more adequate representation of the broader population of pwms who utilise online support groups.participants were identified with the assistance of the chairperson for the ms society of the western cape (south africa), who took the initiative to start the online facebook support group and currently manages the administration of the group. a message was posted to the group explaining the objectives of the study. members of the online support group who were interested in participating in this study were invited to indicate their interest to participate either to the chairperson of the ms society, or to the researchers via email. the inclusion criteria for participants of this study were that: (1) they had to be non-active members of the support group (members who post messages occasionally or not at all) and (2) they read the group’s postings regularly. ethical approval has been granted from the health research ethics committee at the university (ethics reference number s13/04/074). individuals who indicated that they were willing to participate in the study were contacted via telephone or email to arrange a meeting with each participant at a time and place of their choice. all the interviews were conducted in the participant’s home. data collection began with explaining the aims of the study, confidentiality of data, and the rights of the participants, and informed consent was sought from the participants. the participants were then requested to provide basic biographical information, such as their gender, age, duration of illness, as well as how long the participant has been part of an online support group. thereafter a 60–90 minute individual, in-depth semi-structured interview was conducted with each participant. these interviews were guided by the following questions: • what types of support networks are available to you? • what types of support do you get from the online support group? • what facilitators are provided by the online support group? • are there any barriers involved in being part of an online support group? to assist the transcription process, each interview was audio-recorded with permission from each participant. data analysis data were analysed by means of a qualitative method known as thematic analysis. thematic analysis is a method for discovering, examining and recording patterns within a data set (braun & clarke 2006). according to this method, the first step entails researchers familiarising themselves with the data, which is achieved by transcribing the data followed by reading and re-reading it until they are able to generate initial ideas from it (braun & clarke 2006). the second step involves generating initial codes from the data, which involves identifying aspects of the data that appear interesting; thereafter, data is collated according to each code (braun & clarke 2006). step three involves sorting through the codes to identify potential themes and then combining these coded extracts to form an overarching theme (braun & clarke 2006). the fourth step is to review identified themes, which involves establishing whether potential themes correlate to the coded extracts and then to the entire data set (braun & clarke 2006). step five involves naming and defining each theme to refine it; this entails writing a detailed analysis for each theme and then identifying where the theme fits into the overall description of the data (braun & clarke 2006). the final step is to write a report. this write-up must provide vivid examples that validate the argument that is being made, and this can be achieved by using direct quotations from the interviews to demonstrate the identified themes (braun & clarke 2006). contextualising the findings social support has developed into an umbrella term that refers to the various aspects involved in social relationships, and in most cases it refers to functions that are performed for an individual by their significant others (schwarzer & leppin 1988). researchers have found that an ideal measure of social support was to examine subjective experiences of perceived functional support (cohen & wills 1985; house & kahn 1985). functional support can thus be broken into its components in order to evaluate how each component relates to different outcomes (sherbourne & stewart 1991). the framework that was used to make sense of the results of this study was the five components of functional support, namely emotional support, instrumental support, informational support, appraisal support and social companionship (sherbourne & stewart 1991). this framework was chosen because an online support group provides a form of support and this study aimed to explore the types of support that are acquired and the barriers that are associated with non-active members of this group. emotional support refers to the acquisition of love, care, esteem and empathy from others (schwarzer & leppin 1988). instrumental support involves the provision of physical or mental assistance from others when facing a task. this form of support can be material support, financial assistance or services and encompasses the direct ways that individuals help others (schwarzer & leppin 1988; sherbourne & stewart 1991). informational support involves the provision of knowledge to enable understanding and coping with a particular situation (cohen & wills 1985; schwarzer & leppin 1988). appraisal support involves the validation of an individual’s cognitions, beliefs or emotions regarding a situation or their self (schwarzer & leppin 1988). social companionship involves sharing leisure time, laughing, dining out, conversing or collaborating together (schwarzer & leppin 1988). the facilitators and barriers that were identified in this study comprised mainly of emotional support, informational support and social companionship. ensuring rigour there are various means to establish rigour in qualitative research and several of these methods were utilised to ensure the rigour of this study: namely reflexivity, member checks, and peer debriefing. reflexivity necessitates that the researcher reflects on their own beliefs in the same manner as they examine the beliefs of their participants (krefting 1991). the primary researcher enhanced reflexivity by discussing emergent findings with the project leader, who has knowledge of ms and experience of qualitative research. member validation (or checks) involves checking the findings of the collected data with the members of the participant group (long & johnson 2000). this process was undertaken during data collection, where the primary researcher confirmed points that were made by participants during the interviews. peer debriefing can be pursued by discussing emergent findings at regular intervals with knowledgeable colleagues. this stimulates exploration and consideration of additional explanations and perspectives at different stages of data collection and analysis (long & johnson 2000). this method was utilised by discussing and comparing ideas, methods, and findings with the project leader throughout the research process. results top ↑ it was evident from the interviews with the participants that, despite differences in the duration of membership of the online support group as well as variation in the time elapsed since ms diagnosis, there were several themes that appeared to be common across the experiences of participants. as discussed earlier, the results of this study were interpreted according to the model of functional support which comprises of five types of support (emotional support, informational support, social companionship, instrumental support and appraisal support) (sherbourne & stewart 1991). the key themes and their respective sub-themes that were identified through the process of thematic analysis can be found in table 1. each theme possessed various sub-themes that could be classified as facilitators (any support, services, or processes that are helpful to the participants) and/or barriers (any aspects that make the experience of being part of the online facebook support group challenging) that were associated with membership of an online support group. it is vital to note that these themes are not displayed or discussed in any particular order of significance. table 1: themes and their respective sub-themes that were identified during thematic analysis. facilitators with regard to the facilitators that were accessible through membership of an online support group, three main themes were identified, namely emotional support, informational support and social companionship. emotional support the first main theme that was identified during data analysis was that participants acquired significant emotional support through belonging to the online support group despite their non-active membership status. the sub-themes identified as emotional facilitators were: constant source of support and exposure to negative aspects of the disease.constant source of support: the majority of the participants reported that although they regularly read the messages that are posted in the group, they hardly ever post messages. regardless of this, several participants indicated that the group was a constant source of emotional support for its members. one participant said the following: ‘...with this group i know i will never be alone again because they are there for me and when i know an answer i’m there for them’ (p6).1 the online support group was also a source of understanding and genuineness/empathy for certain participants, as illustrated by the following extract: ‘you know what makes me feel good is that they have such genuine comments, they don’t know this person from a bar of soap but they’ve taken the time to write something.’ (p2) participants also noted that emotions were sometimes conveyed through messages despite communicating through an online medium, as individuals often felt connected to others without directly communicating with them: ‘i will always go on there to read the messages, it is like my family; it’s like real close friends even though i’m not in a personal way close to them.’ (p7) exposure to negative aspects of the disease: participants indicated that exposure to the negative aspects of the disease often served as a reality check for them, as it caused them to feel grateful for their health: ‘i’m also grateful for it because i’m very fortunate not to be as bad as lots of people. i see what everybody is going through...it really makes me feel so blessed.’ (p10) the participants also seem to admire the coping skills of group members who are much worse off that what they are: ‘i think it’s good that there are people in the group who are progressed quite far. like this one lady is in a wheelchair, but she’s magnificent. you know what, she never ever complains and to me those people are the people that i think ‘wow’.’ (f3) informational support another main facilitator that was identified through the online support group was informational support. two sub-themes were identified in relation to this form of support, group as a source of information, and quality of information.group as a source of information: the online support group often served as a source of information for many participants: ‘you see the agony of people trying to go through getting this needle to go into their skin and they share this on the system and then you get the tips about, ‘well, i rub apple cider vinegar onto the soft side because it helps with the irritation of the site’, the other one says, ‘my husband’s learnt to do the injections’. that is wonderfully encouraging.’ (p2) participants also noted that the information provided in the online support group often improved their knowledge regarding ms: ‘the online support group, it offers a lot of research and it actually educates you more about the illness’ (p6). in addition: ‘it’s nice to hear what other people are going through, and it teaches you more about ms as well because there are things that you don’t know and then you can hear what they are doing.’ (p10) quality of information: participants noted that the information provided by the online support group was of a good quality, especially when it was provided by the older members or professionals of the group who had experience with ms and could thus offer practical advice to other members: ‘there are a lot of people that have been having ms for ten, twenty years, and i’ve just had it for six years now, so my knowledge of this is not that good so i prefer the older members to actually give that kind of answers.’ (p6) the online support group also served as a source of research about ms, where members would post links to articles related to cures, symptoms, and explanations of the illness, which was noted as an empowering resource by certain participants, as illustrated by the following extract: ‘i do read everything in all the links, there is always some extra information out there, and it’s nice to know and be on top of everything. and then it actually makes the whole ms journey light to bear, because if you are informed it takes the fear away.’ (p10) social companionship the online support group provided the opportunity for social companionship for several participants, which could be a vital resource for individuals with a disease that often results in isolation.place of belonging: participants indicated that the online support group often served as a place of belonging for them, as it provided a common ground where different individuals could come together to discuss various topics: ‘it is nice to hear about what they say, ‘i’ve just gone for my first injection today and this is how i feel’, and whatever the case may be. because when i started my medication it was nice to know what the symptoms would be, that type of thing.’ (p10) barriers some barriers that accompanied membership of this online support group were also identified during data analysis. three main themes were identified; namely emotional support, informational support, and social companionship. emotional support the first main theme that was identified was that participants experienced several challenges in relation to emotional support. the sub-themes related to the emotional challenges encountered by these individuals were: emotions lost online, response to messages, and exposure to negative aspects of the illness.emotions lost online: it appears that participants felt that emotions were not always properly conveyed when they were communicated through an online medium. individuals noted that ms can be an isolating disease, which illustrates the importance for adequate emotional support. furthermore, participants mentioned that the inability to perceive or express emotions created difficulties when it came to forming connections with other members, as it was not possible to view body language; for example: ‘but, otherwise online sometimes you can’t just express it. with text and emails everything, we kind of develop something where all emotions are cut off’ (p6), and ‘i can’t see their body language. i can’t see their eyes, their eyes to me is the mirrors of your soul. you can’t see the gentleness of the person’ (p7). a perceived lack of emotional connection meant that individuals did not always feel comfortable enough to share their experiences with others on the online support group, which led to feelings of isolation as participants longed for a human touch that was lacking on the group: ‘via email and sms’s you can’t feel that emotional connection with somebody, so it kind of pushes you away emotionally. you feel kind of on your own island’ (p6). response to messages: it became evident that the ability to communicate on the online support group was often hindered in certain participants due to severe ms symptoms that affected their mobility as well as their capacity to utilise the computer. this could be one explanation of why all the members on the group do not respond to or comment on posts made by others on a regular basis: ‘for me it is the fact that i cannot do postings and participate. i guess i could ask my husband to type in for me, but he does so much for me already, i just don’t want to burden him with frivolous things.’ (p8) exposure to negative aspects of disease: another emotionally challenging aspect of online support group membership was that participants were often exposed to negative aspects of the disease through posts made by other members. common feelings that emerged as a result of exposure to negative aspects of ms being shared on the group were sadness, uncertainty, and feelings of negativity. one participant noted that exposure to negative aspects of ms, such as hospitalisation, relapses, and the death of other members, provoked feelings of sadness, especially during periods of good health: ‘when i look at all the messages on facebook and i see how the people are suffering and how difficult it is and me also being an ms sufferer, i am doing so well. it actually makes me sad. this one is going into hospital and this one is going for this injection. it makes me sad.’ (p9) the exposure to negative ms symptoms often aroused feelings of uncertainty for participants, as they were exposed to an array of symptoms that they might not have experienced yet. one participant explained: it is the negativity, it is when you do see a symptom that maybe you haven’t experienced personally it is the thought that, ‘oh, is that one still coming my way?’, so there is that exposure. (p2) participants also noted that feelings of negativity were aroused in response to complaints or sharing of negative aspects of the disease on the online support group, which was not something that they wanted on the group: it makes me feel sorry for the people and i realise that i might be there one day and at this point i don’t want to think like that. i want to go for it as long as it is going good, i want to let it last for as long as possible. (p9) informational support another prominent challenge that was identified was deficits in informational support. the online support group served as a vital source of informational support for several participants; however, the following sub-themes indicate how this form of support was impacted on by the information posted on the group as well as the misuse of the online support group.information posted on the group: participants also indicated that the amount of links that were posted on the online support group, which would redirect members to articles or sites with information about ms, could be overwhelming at times, especially when individuals were not familiar with the internet. this challenge was perceived as an overload of information, as described by the following extract: the internet, some of us didn’t grow up with it. it is overwhelming in terms of the amount of information. there are a lot of good sites and links that they do put there. there is just so much word overload. (p2) in addition: i feel that sometimes there’s a bit too much information on there. (p5) the quality of the information supplied by members of the online support group was also found to be a challenging aspect for certain participants, as they were often uncertain about the accuracy of this information: ‘sometimes i’m like okay, i’m not sure, but i think i’m going to google that just to make sure about that because it doesn’t sound kosher’ (p6). misuse of group: participants also indicated that the misuse of the online support group was a challenge, as group members would sometimes make posts that were not ms-related, which could challenge the purpose of the group or cause other members to not see important ms-related posts: ‘sometimes it goes a bit off topic and then you miss the important things’ (p5). it was also noted that the group had become similar to a chat room, where conversation was not ms-related and the purpose of the group was undermined, as one participant explained: ‘all of a sudden there’s a whole conversation like it’s a chat room. to me it’s not a chat room, it, that doesn’t serve the purpose of what it’s there for and i don’t like that. i would change that people can just do random chatting there because if i want to do random chatting, i phone my best friend.’ (p3) social companionship many of the participants experienced challenges in relation to social companionship. factors associated with their non-active status were identified as the main influence that hindered participants’ abilities to socialise.non-active status: several participants mentioned that their non-active status on the online support group often influenced their ability to form bonds with other members, as other members did not always keep in contact with them, which made socialisation difficult: ‘because of that, me not being so active, people don’t ask me just, ‘how are you, what happened, how far is the divorce, how’s your life’, that doesn’t happen’ (p7); and ‘i’m not very active, so i don’t get a chance to build a relationship or a friendship with somebody’ (p9). discussion top ↑ coulson (2005) suggested that it is important to focus on the impact that messages posted online have on recipients, whether it be the intended recipient or those who are non-active in the group. this study focused on the non-active users of the online support group for pwms, as previous findings suggest that even the non-intended recipients of posts paid attention to comments made by other members, and this information provided by their peers was regarded as a reliable source by those who read it (coulson 2005; preece, nonnecke & andrews 2004). in line with previous research, it was evident from the findings of this study that there could be many reasons why pwms are involved in the online facebook support group in a non-active way. similar to the findings of preece et al. (2004), several of the participants seem to prefer to be non-active members of the online support group because they acquire sufficient support by merely reading the posts and replies made by other members. on the other hand, ms is known to be a debilitating disease that can create difficulties in physical and motor coordination (mozo-dutton et al. 2012; uccelli et al. 2004), which would make it difficult to utilise a computer and to post on the online support group. some participants in this study faced severe mobility difficulties due to ms symptoms that prevented them from participating in the group, despite a desire to be more involved.several studies have found that perceived social support is an important resource for individuals with ms, as it often improves their coping strategies in the face of the many challenges that are associated with ms (chalk 2007; malcomson et al. 2008; mohr et al. 1999). such findings also emerged in this study, as the participants considered the emotional support, informational support and the social companionship provided by the online facebook support group for pwms to facilitate their day-to-day coping with ms, despite their non-active membership status. one of the most vital facilitators was the acquisition of emotional support from members of the online support group, which consisted of sub-themes relating to a constant source of support and exposure to the negative aspects of the disease. the group served as a vital source of emotional support for several participants, as members would provide genuine responses to messages posted on the group by expressing empathy, acknowledging how individuals were feeling, and reciprocating emotions (coulson 2005). despite the probability of having very little direct contact with group members due to their non-active status, they were often able to relate to the experiences and emotions expressed in the group. this is possibly because individuals had developed a mutual understanding as other members had already experienced similar emotions and thus had a level of understanding that family members or friends did not (attard & coulson 2012). furthermore, although the participants mainly observed others sharing their experiences (whether positive or negative), without actively sharing themselves, they reported that it gave them the opportunity to see that there were others on the group who were facing more challenging circumstances than they were. this allowed the participants to gain perspective about their illness and this possibly assisted them in attaining a sense of acceptance for their disease (attard & coulson 2012; malcomson et al. 2008). responses to messages have been identified as a potential barrier to emotional support. it has been reported that individuals with parkinson’s disease were often unable to type and answer posts as they were hindered by the symptoms of their disease (attard & coulson 2012). this appeared to be the case for several participants in the present study, as several individuals noted that their severe physical symptoms, which affected their mobility as well as their capacity to utilise the computer, often prevented them from typing or responding to posts. this could be another explanation of why all the members on the group are not actively participating in the online support group on a regular basis. a previously identified challenge of online support group membership – namely the difficulty of being exposed to negative aspects of an illness – was also found to be a prominent challenge among participants, as it was found to arouse feelings of uncertainty and sadness (van uden-kraan et al. 2008a). another prominent theme that was identified was informational support, where group members provided a wealth of information relating to topics such as disease management or symptom interpretation, which assisted participants to cope with the various barriers that were associated with ms (attard & coulson 2012; coulson 2005; coulson et al. 2007). it has been speculated that individuals who have been living with ms for longer periods have gained a level of experience that allows them to provide useful information to others (malcomson et al. 2008). similar findings emerged in the present study, as participants expressed a preference for the advice and insight that was provided by older members of the group. the group also served as a source for research, where individuals would have access to the latest information on cures and medications for ms. previous findings suggest that individuals who were equipped with the latest knowledge of their disease experienced a sense of empowerment (malcomson et al. 2008). such findings also emerged in the present study, as several participants mentioned that being informed about ms led to a decrease in fear associated with the disease. it was noteworthy that although the participants were non-active and mainly observed and read the messages that were posted, they benefited from the informational support that is provided by the online support group for pwms. the most prominent challenge that was associated with informational support encompassed uncertainty regarding the quality of information that was being posted on the group. findings by van uden-kraan et al. (2008b) and finn (1999) have suggested that individuals often worry about the quality of information being provided on online support groups; however, certain participants noted that the quality of the information posted on the group was high, as it was being supplied by professionals and individuals who had a wealth of knowledge regarding ms. such individuals have been known to intervene if there was any misinformation being provided on the group (van uden-kraan et al. 2008a). too much posting was also noted as a challenge to informational support, as several participants felt that there was often an information overload on the group, where members would post too many links to the group or too many of the same questions. this mirrors findings made by van uden-kraan et al. (2008b) that members would often outgrow their support groups due to the repetition of questions or posts. one of the most prominent themes among participants was the acquisition of social companionship through the online support group, which consisted of the sub-theme encompassing a place of belonging. the risk of social isolation can be elevated among individuals with ms due to the interference of symptoms with daily functioning or a lack of helpers available (finlayson & cho 2011); therefore, it is possible that the online support group served as an important means of preventing social isolation in pwms. the online support group fostered a sense of belonging among many participants, as it allowed different individuals to meet together and discuss various topics relating to their illness. this facilitator created a sense of empowerment and comfort because individuals no longer felt that they were facing ms alone, as they were possibly aware that they belonged to a network of support that would always be available (coulson et al. 2007). it is remarkable that the participants of this study experienced a sense of belonging to the online support group for pwms, despite their non-active membership status. with regard to barriers to social companionship, participants found it challenging to form friendships with other members of the online support group and two participants indicated that their non-active status was the reason behind this. this finding contradicts results of a study by attard and coulson (2012) examining communication on an online support group for people with parkinson’s. attard and coulson (2012) found that friendships are usually formed easily in contexts where individuals share similar experiences and feel belonging to a specific group. however, the aforementioned study examined a larger sample of active posters, which might account for this discrepancy. limitations and directions for future research firstly, the findings of this study could be limited by the fact that a small sample size was used consisting primarily of individuals who resided in the western cape, which limits the ability to generalise the results of this study to the broader population of individuals with ms in south africa who utilise the online support group. it would be beneficial to replicate this study among a more representative sample that would encompass individuals from different regions in south africa.secondly, the participants of this study consisted of individuals who are non-active users of the online support group; it is thus possible that the participants are not representative of all participants who belonged to the ms online support group. this broad representation was never the aim of this study. it is however recommended that future studies explore comparisons between active and non-active users to examine whether the two groups differ in their experiences of the online support group. thirdly, it should be noted that the findings are based on the subjective experiences of a once-off semi-structured interview with the participants. participants themselves estimated to what extent they benefited from the online support groups. although this study provided us with relevant insights into the impact of an online facebook support group for pwms on non-active members, a longitudinal study would be useful in evaluating whether the non-active group members truly benefit from the online support group. finally, it was evident from the findings of this study that the participants experienced a sense of belonging to the online support group for pwms. future research could investigate the extent to which pwms identify with their online support group, such as feeling a sense of belonging to the group and a sense of commonality with other members of the group, and the implications this has for their well-being. this could contribute to the research conducted by wakefield et al. (2013) who investigated this issue in the context of a face-to-face ms support group. conclusion top ↑ two key conclusions can be drawn from this study. first, it is evident that the non-active members of the online support group for pwms have valid reasons for their non-active membership status. this seems to support the suggestions of previous research that non-active membership status in an online support group should be viewed not only as normal, but as a valuable and valid form of online behaviour. second, and most important, the findings suggest that the online facebook support group provided the group members with an important support network in the form of emotional support, informational support and social companionship, despite their non-active membership status or the barriers that have been identified. regarding the practical implications, the physical challenges that have been identified as a major barrier for some could be addressed by the creation of more accessible and user-friendly patient-oriented websites and platforms. with regard to the lack of social companionship, the challenge for health professionals is to understand how the non-active experience can be more effectively supported to increase feelings of membership with the online facebook support group for pwms. this could also be addressed with the assistance of organisations such as the ms society of the western cape by finding creative ways to involve not only the participants who are generally actively involved on the online support group, but also the non-active members. last, but most important, health professionals should encourage pwms to join online support groups, since active as well as non-active members of these groups seem to benefit from support that is provided by online support groups. acknowledgements top ↑ this work is based on the research supported by the national research foundation (nrf). competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions both j.s. 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technology, durban, south africa maureen n. sibiya office of the vice-chancellor, mangosuthu university of technology, durban, south africa dumile gumede executive deans office, faculty of health sciences, durban university of technology, durban, south africa reggiswindis t. hlengwa department of community health studies, faculty of health sciences, durban university of technology, durban, south africa citation masuku, a.s., sibiya, m.n., gumede, d. & hlengwa, r.t., 2025, ‘the psychosocial challenges experienced by students with disabilities at the university of technology in south africa, kwazulu-natal’, african journal of disability 14(0), a1668. https://doi.org/10.4102/ajod.v14i0.1668 original research the psychosocial challenges experienced by students with disabilities at the university of technology in south africa, kwazulu-natal andile s. masuku, maureen n. sibiya, dumile gumede, reggiswindis t. hlengwa received: 17 jan. 2025; accepted: 16 may 2025; published: 08 oct. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: students with disabilities encounter numerous challenges in life, which ultimately harm their psychosocial well-being. these psychosocial challenges pose a threat to their university life experience and hinder the chances of success for students with disabilities. objectives: the study aims to explore the perspectives of student affairs practitioners and students with disabilities on the psychosocial challenges of students with disabilities. method: in this study, we used data from semi-structured interviews with 12 purposively selected student affairs practitioners and students with disabilities. after transcription, the data were analysed thematically. results: four themes were identified: (1) poor infrastructure and a lack of resources; (2) stigmatisation and discrimination; (3) mental health and social challenges; and (4) awareness of disability and provision of adequate resources. conclusion: students with disabilities face several psychosocial challenges and these challenges harm their mental health and social well-being. contribution: this study adds to the expanding body of knowledge on the psychosocial challenges of students with disabilities. universities have committed to advocating for and ensuring the inclusivity of these students. consequently, it is crucial to understand their daily challenges and the necessary interventions to address them, ensuring that these students feel a sense of belonging and recognition. keywords: university of technology; disabilities; psychosocial; student affairs; practitioners; kwazulu-natal. introduction institutions of higher education formally afford students opportunities to develop their talents and skills; for this to be achieved, students must have access to relevant resources. however, this has not been the case for students with disabilities as they are confronted with numerous challenges (nene 2019). people with disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which may prevent their full and effective participation in society (ginis et al. 2021). accessing university-level education can be met with many hindrances, especially for students with disabilities (madhesh 2023). students with disabilities may face challenges when reaching higher education and attempting to be successful (martins, melo & martins 2021). people with disabilities experience challenges in higher education settings with the inclusive educational principles of the institutions (moriña, lópez-gavira & morgado 2017). inclusive education in universities is still inadequate for numerous reasons, including low expectations, negative attitudes, inadequate or irrelevant teacher training, physical barriers, availability of resources, transitional planning and ineffective support services (sánchez, de haro-rodríguez & martínez 2019). the lack of inclusive educational practices constitutes significant academic barriers for students with disabilities (algolaylat et al. 2019). inclusion is about providing equitable opportunities to all students, including those with challenges, to receive services with the necessary supplemental aids and support that conform to their needs (hill, shaewitz & queener 2020). disability and all its related aspects pose significant challenges for individuals, families and communities worldwide (makwela & smit 2022). it is a known fact that disability in any form or shape is a phenomenon that incurs social, emotional and learning problems (moasun 2023). hence, students with disabilities face several psychosocial challenges that could vary from home to home depending on family backgrounds, and the educational and economic statuses of the caregivers (abeshu & baissa 2018). therefore, this study is important as it aims to explore the perspectives of student affairs practitioners and students with disabilities on psychosocial challenges. the motivation for this study comes from mutanga (2018), who highlighted that globally, few students with disabilities progress in higher education, with a particular focus on the psychosocial challenges faced in the south african context because of its complex history and socio-economic issues. these barriers affect students from the start of their undergraduate studies through to completion. even those who manage to access higher education still face significant challenges. therefore, it is crucial to explore the psychosocial challenges of students with disabilities through the experiences of both student affairs practitioners and the students themselves. identifying intervention and prevention strategies to address these challenges is essential. the psychosocial challenges of students with disabilities in higher education the right to a decent, high quality and acceptable life for people with disabilities has been the most important principle of many international laws and conventions over the past years (madhesh 2023). these international laws include the united nations convention on the rights of persons with disabilities (2006), which advocates for equal rights, accessibility and social inclusion for individuals with disabilities (watson et al. 2022). another relevant international framework is the sustainable development goals (sdgs) (2015), as the 2030 agenda for sustainable development outlines specific objectives for the inclusion of persons with disabilities in education, employment and social protection (hajian & kashani 2021). in addition, guematcha (2022) highlights the african charter on human and peoples’ rights (achpr) and the protocol on the rights of persons with disabilities (2018), which address disability rights within the african context, emphasising inclusion and non-discrimination. the number of students with disabilities, entering higher education institutions, has increased (mantsha 2016). inclusive disability legislation played a crucial role in increasing the number of students entering higher education; however, barriers to the full participation of students remain (biggeri, di masi & bellacicco 2020). garcía-gonzález et al. (2021) argue that students with disabilities are exposed to barriers that relate to the lack of guidance and information at the time of entering university. thus, it is vital to introduce measures that would facilitate this process mainly to modify policies for improving attention to disability. even though universal inclusion is a basic principle of sdgs, the inclusion of people with disabilities in humanitarian interventions and policies is still intangible (trani et al. 2020). moreover, in the last two decades, the south african government has developed impressive policies for the inclusivity and accommodation of students with disabilities in higher education (lourens & swartz 2020). however, a concern was raised regarding the south african higher education system that it has inadequate resources and the policies are slowly and poorly executed (carrim & wangenge-ouma 2012). mpu and adu (2021) explain that the inclusive education policy (white paper 6 2001) aims to integrate learners with disabilities into mainstream education while providing special schools where necessary. however, its implementation has been inadequate because of a lack of resources, inaccessible infrastructure and untrained teachers, preventing many children with disabilities from receiving a proper education. in south africa, several comprehensive policies are in place, concerning education and the rights of people with disabilities. nonetheless, the execution of these policies is considered weak (moodley 2021). it must be noticed that despite the challenges, related to the implementation of policies, the south african government is making efforts to ensure that people with disabilities have enhanced access to quality education and employment (zongozzi 2022). the stigma and its effects on the life course trajectories of people with disabilities have raised interest, but, sadly, students with disabilities are not exempted from this matter (chatzitheochari & butler-rees 2023). moreover, exposure to stigma and stereotypical threats is damaging for several marginalised groups (haft, greiner de magalhães & hoeft 2023). people with disabilities have been frequently stigmatised and it has harmful impacts concerning collective socio-educational inclusion (gallego-ortega & rodríguez-fuentes 2021). majoko (2018) concurs that students with disabilities have historically been marginalised and discriminated against in higher education. people with disabilities are vulnerable to discrimination, which leads to isolating themselves from society because they feel unwanted and rejected. this harms their psychosocial well-being (hazarika 2019). disability can be a traumatic experience for others as it usually comes with long-term effects, which may contribute to psychological challenges, related to anxiety, depression and poor psychological wellness (oyeleke & busari-akinbode 2021). however, a growing perspective among people with disabilities has shifted the conceptualisation of disability as a state of weakness and disadvantage (onalu et al. 2024). furthermore, disability may also reduce one’s internal coping resources, such as mastery and self-esteem, external coping resources and social support (namkung & carr 2020). students with disabilities are confronted with the same challenges as other university students, such as academic progress, social connections, finances and other unexpected challenges. however, students with disabilities are often in need of extra assistance regarding their physical, mental and developmental differences (hlengwa & masuku 2022; safer, farmer & song 2020). despite the various challenges of students with disabilities, efforts have been made to create an educational culture where students feel competent, valued and not excluded. irrespective of their characteristics, interests, abilities or difficulties, access for people with disabilities has become a legally recognised right (fernández-batanero, montenegro-rueda & fernández-cerero 2022). support services and legislation have greatly contributed to the steady increase of students with disabilities in higher education (yssel, pak & beilke 2016). hence, globally, universities have initiated a gradual transformation in responding to student diversity. during this process, universities have started analysing the needs of students with disabilities to improve the accessibility of all their services and resources (carballo et al. 2023). however, despite these efforts of the universities, the literature shows that much must still be done to achieve different perspectives (moriña, sandoval & carnerero 2020). it is therefore important that higher education institutions should consider the voices of vulnerable groups of students to reduce existing barriers effectively (rodríguez herrero, izuzquiza gasset & cabrera garcia 2020). inasmuch as progress has been made in providing access to students with disabilities, more awareness of disability, anti-stigma and anti-discrimination training are still needed (kauffman et al. 2022). it is also recommended that the training and awareness of the whole university community must be improved, particularly, on matters, related to students with disabilities (garcía-gonzález et al. 2021; hlengwa & masuku 2022). theoretical framework the study was guided by -the socio-ecological framework. bronfenbrenner developed the socio-ecological model originally to understand factors that influence human development better (tebb & brindis 2022). the socio-ecological framework is a multilevel conceptualisation of health that involves intrapersonal, interpersonal, organisational, environmental and public policy factors (scarneo et al. 2019). unlike linear or single-factor frameworks, the socio-ecological framework emphasises that people are embedded in different systems and that the interaction that is happening between these systems impacts their health and well-being (bueno-gutierrez & chantry 2015). the socio-ecological framework was applied to this study to analyse the various levels influencing students with disabilities at the university of technology (hlengwa & masuku 2022). it examines challenges from multiple perspectives: the individual level focuses on personal experiences; the interpersonal level looks at relationships with family, peers and teachers; the institutional level explores educational structures and policies; the community level considers the broader environment; and the societal level addresses wider cultural and societal influences. by using this framework, the study moved beyond individual challenges, placing students’ experiences within a broader institutional and societal context. research methods and design research design this study was guided by a qualitative narrative research design as it seeks to explore the perspectives of student affairs practitioners and students with disabilities on psychosocial challenges that students with disabilities experience. this method allows the researcher to gather and examine in-depth personal narratives to gain insight into individuals’ lived experiences, perspectives and the meanings they attribute to significant life events (hlengwa & masuku 2022; renjith et al. 2021). study setting this study was conducted at the university of technology in kwazulu-natal (kzn). this is a public university where student affairs professionals from different units work under the student services units. sampling and participants the study used a purposive sampling technique to select participants who aligned with the study’s objectives. the criteria for selection included student development officers, psychologists, professional nurses and disability officers, as these student affairs practitioners interact regularly with students with disabilities and are knowledgeable about their challenges. participants were required to be over 18 years old, with student affairs practitioners having at least one year of experience. five students with disabilities and seven student affairs practitioners were chosen. staff members not involved in student affairs and students without disabilities were excluded. this sample size aligns with qualitative research standards for meaningful insights, similar to previous studies on psychosocial challenges and disability support in higher education. table 1 illustrates the demographic characteristics of participants. table 1: demographic characteristics of participants. recruitment process the researchers obtained permission from the university’s gate permission committee after receiving provisional ethics clearance from the institutional research ethics committee (irec). researchers then approached student affairs unit managers and the disability rights unit through the student counselling and health unit to recruit participants. an information letter outlining the study’s aim and procedures was provided, and participants were asked to sign a consent form. those who did not consent were excluded from the study. data collection the interviews were semi-structured to provide flexibility in data collection. this approach allowed the researcher to probe deeper, encouraging participants to elaborate or explore new topics based on their responses. therefore, participants have the freedom to express their views in their own words (adeoye-olatunde & olenik 2021; hlengwa & masuku 2022). the interview guide was designed to align with the study’s objectives. face-to-face interviews, lasting 30 min to 40 min, were conducted with 12 participants, including student affairs practitioners and students with disabilities. the interviews were audio-recorded for data analysis, and data collection continued until saturation was reached. data analysis the researchers transcribed the recorded interviews verbatim. for data analysis purposes, researchers used tesch’s eight steps in the coding process (creswell 2014). the researchers carefully reviewed the transcripts multiple times to enhance their understanding of the perspectives of both student affairs practitioners and students with disabilities. they avoided abbreviating categories, instead grouping similar topics into themes and sub-themes, which were then coded and categorised. field notes were also used to provide context during analysis. after a preliminary analysis and discussion, the researchers reached a consensus on the final themes. by applying the socio-ecological framework, they identified interconnected influences on students’ experiences, leading to a deeper understanding and informed recommendations for addressing the challenges faced. enhancing trustworthiness to ensure the trustworthiness of the study, as ahmed (2024) describe, four criteria of credibility, dependability, conformability and transferability were used. credibility was measured by ensuring that the research findings accurately reflect the experiences and perspectives of the participants. dependability was achieved by internally conducting an inquiry audit to demonstrate the consistency and reliability of the research findings. confirmability was achieved by ensuring the collected data were checked throughout data collection and analysis. the researchers ensure validity, reliability and ethical research practices to minimise bias and enhance objectivity. transferability was achieved through the thick description of the research findings from the collected data. this eventually involved providing adequate details on the study setting, participants and methods that were used to collect the data. ethical considerations the study received ethical clearance from institutional research ethics committee on 03 july 2024 (no. irec 031/24) and obtained written consent from participants. an informational letter outlined the research procedure, emphasising voluntary participation with the option to withdraw at any time. interviews were audio-recorded with permission, and pseudonyms were used to protect participants’ identities. participants were informed about the availability of psychological support, although no requests for such support were made. data were securely stored on a password-protected computer, with audio recordings kept on an external hard drive. after five years, all electronic data will be deleted and hard copies shredded (hlengwa & masuku 2022). results table 2 outlines the themes that emerged from the study. table 2: themes that emerged from the study. theme 1: poor infrastructure and a lack of resources students with disabilities face major challenges on campus because of poor infrastructure and limited resources, which hinder their learning and mobility. while some student affairs practitioners acknowledge the university’s support, students feel that resources are insufficient and often experience marginalisation despite efforts to accommodate them. the following excerpts illustrate this experience: ‘… [s]ometimes we cannot even attend other lectures on campus because of venues that are not conducive for our learning. i remember this other time, we were told that the lecture would be on this particular campus, and when i got there, there was no lecture only to find that it had been moved to another campus because of issues with venue bookings. i ended up not attending that lecture because i could not go to that campus.’ (p5, female, student, 18–25 years old) ‘for me, i think we do not have good infrastructure and resources that accommodate the needs of students with disabilities. yes, we are trying by all means to ensure that they feel accommodated especially in our residences, but on campus, we are still struggling to provide them with necessary support.’ (p3, male, student affairs practitioner, 31–35 years old) ‘…. [w]e try by all means to ensure that students with disabilities have support from the university, but the problem is that there is a lack of resources.’ (p7, female, practitioner, 51–55 years old) ‘… [i]n my own experience, we do not receive enough support with the resources that we need for our special needs. even when we attend programmes, there is a slim chance that we will find interpreters for deaf students. sometimes, the venues where they host these programmes do not accommodate students with disabilities. if you need something from campus, you hardly get assistance because there are no resources for us.’ (p1, male, student, 26–30 years old) participants’ experiences highlight the significant barriers that students with disabilities face in accessing and participating fully in university life. inaccessible lecture venues and difficulties moving between campuses often disrupt their learning and academic progress. while some efforts have been made by the university to provide support, these initiatives are constrained by resource limitations, leaving students feeling marginalised rather than accommodated. theme 2: stigmatisation and discrimination the findings of the study indicate that most students with disabilities feel their peers stigmatise and discriminate against them. many people believe their disabilities make them different, which often results in stigmatisation (hlengwa & masuku 2022). moreover, the study revealed concerns about discrimination; students with disabilities felt they were treated unfairly because of their conditions and often overlooked because others assumed they lacked capability. this experience contributes to a lack of confidence and leads to feelings that their emotions and needs are not valued. participants said: ‘… [b]ecause of our disabilities, they think that we are different from them and that is why they stigmatise us and label us. i have been in a situation where i was stigmatised by my residence mates.’ (p4, male, student, 18–25 years old) ‘students with disabilities also experience discrimination and i have dealt with a case where the student with disability expressed her concern about the situation she was faced with where she was discriminated by her classmates. this is wrong and it kills their self-confidence because they are being overlooked because of their disabilities.’ (p4, female, practitioner, 41–45 years old) ‘… [t]here are several psychosocial challenges that are faced by the student with disabilities which include being stigmatised by people who do not understand disability and who are not considerate of their feelings because we know that in general, people with disabilities are vulnerable.’ (p6, male, practitioner, 26–30 years old) participants shared that they feel stigmatised by their peers, who often view them as different, leading to labelling and unfair treatment. discrimination exacerbates these challenges, causing students with disabilities to feel overlooked and undervalued, which undermines their confidence and sense of belonging. some participants found that students with disabilities are frequently isolated and neglected, particularly in extracurricular activities, leading to feelings of loneliness as they are often excluded and treated as an afterthought. this is what the participants said: ‘… [w]hen there are student programmes, it is difficult for some of us to attend because we know our needs will not be catered for. there was this time in my residence when we had a programme on the fourth floor and there are no lifts, you have to use the stairs to get to that floor. as much as i wanted to attend the programme, i could not go because of my condition. this tells you that we are isolated, maybe not intentionally, but i felt like we are not taken into consideration.’ (p3, male, student, 26–30 years old) ‘… [m]ost of the time, i would feel lonely because i know that i cannot do the things i like and be with people i would want to be with because i feel like a burden and the university sometimes acts like we are an afterthought because they do not give us enough support.’ (p5, female, student, 18–25 years old) the exclusion of students with disabilities from extracurricular activities and social events, whether intentional or not, fosters isolation and loneliness. theme 3: mental health and social challenges the study identified mental health and social challenges as the most significant issues faced by students with disabilities, severely affecting their overall well-being. poverty also emerged as a major concern, with many students lacking the resources needed to meet their basic needs. the lack of peer support exacerbates mental health struggles, as students often find it hard to connect with others. in addition, difficulties in forming relationships are often linked to low self-esteem. participants emphasised the following points as critical factors, affecting their experiences: ‘…. [p]overty is also a challenge that is faced by students with disabilities. some of the students come from homes which are economically challenged where they cannot meet the special needs of these students.’ (p2, female, practitioner, 41–45 years old) ‘… i had experienced psychological issues because of my disability. at the time it was difficult for me to accept my physical condition and the lack of support from my peers also played a role in my mental health breakdown because i was not able to communicate my feelings with others.’ (p2, female, student, 18–25 years old) ‘… [f]or me is the inability to create lasting relationships with others, in as much as i try to engage with people but because of my confidence and poor communication skills, i cannot relate with my peers. the other issue is that disability also affects my physical health as there are times when i cannot move because of back pain and the day would pass without me doing anything, especially my academic work.’ (p1, male, student, 26–30 years old) many participants noticed that students with disabilities face psychological challenges, including difficulty accepting their disabilities and a lack of emotional support from peers, which worsens feelings of isolation and negatively affects their mental health. social issues, such as struggles with forming meaningful relationships, low self-confidence and exclusion from university programmes, further intensify these challenges. the psychosocial challenges faced by students with disabilities also hinder their academic progress, including participation in extracurricular activities. it was emphasised that the primary reason for students to be at university is their academic goals, and they must receive the necessary support to achieve academic success and excellence. however, the views from participants stated otherwise: ‘… instead of focusing on their academic work, students with disabilities often have to redirect their energy towards overcoming the barriers they face. many times, they miss lectures because of challenges that impact their well-being, preventing them from addressing the most important tasks. i always encourage my colleagues to implement proper measures that break down these barriers and support the academic success of students with disabilities.’ (p5, female, practitioner, 46–50 years old) ‘… [y]ou would notice that in most of the programmes that are hosted by the university, we do not participate and some of the programmes are important for us to attend but we are excluded because our needs are not accommodated.’ (p1, male, student, 26–30 years old) ‘… it is rare for students with disabilities to be recognised for academic excellence because of the challenges they face in completing their academic work, largely caused by teaching and learning barriers. unfortunately, these challenges significantly impact their ability to focus on their primary goal – academic success. it is crucial to ensure that they receive the necessary support to overcome these obstacles and succeed in their academic pursuits.’ (p1, female, practitioner, 31–35 years old) economic hardships, especially for students from disadvantaged backgrounds, worsen these challenges by restricting access to essential resources. physical health issues also hinder their ability to fully participate in academic and social activities, often resulting in missed lectures and reduced academic performance. theme 4: awareness of disability and provision of adequate resources participants highlighted intervention and prevention strategies to address the psychosocial challenges faced by students with disabilities. the study suggests that the university should invest more in raising awareness about disabilities to educate the community. in addition, providing adequate resources, especially in residences, is crucial to improving the living experiences of these students. the following quotes reflect the participants’ perspectives: ‘… [t]he university needs to invest more in creating awareness on disability because i feel like other people are not educated on disability and the types of disabilities that exist. this awareness is important most especially to those who are dealing with students with disabilities so that they are equipped with skills and knowledge on disability.’ (p5, female, student, 18–25 years old) ‘… [f]or now, we do not have enough resources to assist students with disabilities, especially in our residences. our residences are good but they do not have spaces that are conducive for us, the university needs to invest more in ensuring that we have adequate resources within residences so that we can enjoy residence life.’ (p2, female, student, 18–25 years old) ‘[o]ur staff and students need to be educated about disabilities and i am happy that as a university we are making progress regarding that which shows that we are serious about issues faced by students with disabilities.’ (p4, female, student affairs practitioner, 41–45 years old) participants emphasised the importance of raising awareness about various disabilities, especially among university staff and peers, to promote understanding, inclusivity and better engagement. they also identified the need for adequate resources, particularly in residences, to create environments that support both academic and social participation for students with disabilities (hlengwa & masuku 2022). furthermore, participants suggested that students with disabilities should be encouraged and given opportunities to participate in student governance positions, ensuring their voices are heard and represented: ‘some do not want to participate in student leadership engagements because of their conditions. as much as we can see potential in them we cannot force them to take part in these activities. having someone in the student representative council with disabilities could be a big change for us as a university.’ (p7, female, student affairs practitioner, 51–55 years old) ‘… [s]tudents with disabilities can be the ones who drive change within our institution and their voice is much more important, especially on issues related to disability. what they need is support from student affairs practitioners.’ (p2, female, practitioner, 41–45 years old) empowering students with disabilities to take on leadership roles, like in the student representative council, is seen as a key opportunity to drive institutional change and amplify their voices. discussion this study’s findings are framed within the socio-ecological framework, which helps understand the multiple factors influencing the experiences of students with disabilities at university. this framework examines the interplay between individual, interpersonal, institutional, community and societal levels, shedding light on the psychosocial, academic and social challenges these students face (hlengwa & masuku 2022). while higher education presents challenges for all students, those with disabilities often encounter more pronounced difficulties, balancing academic demands with their unique needs. scholars such as salimi et al. (2025) and solís-garcía et al. (2025) stress the importance of creating inclusive environments in higher education for students with disabilities. however, factors such as limited access, participation and support continue to hinder their progress compared to peers without disability. this study aimed to explore the perspectives of both students with disabilities and student affairs practitioners on these psychosocial challenges. individual level in this study, mental health and social challenges were highlighted as the most significant matters that students with disabilities must face. koenig, mclean and bishop (2024) stress that people with disabilities have greater psychological distress because of their vulnerability. several studies have been conducted to compare the mental health needs of students with disabilities to those without disabilities, indicating a significantly higher prevalence of depression, anxiety, non-suicidal self-injury and suicidal risk (solís garcía, real castelao & barreiro-collazo 2024). the findings of this study revealed that these challenges have a detrimental impact on the overall well-being of these students (hlengwa & masuku 2022). disability on its own has a negative effect on an individual, thus, namkung and carr (2020), reiterated that students with disabilities face unique challenges that can negatively impact their well-being. it also appeared from the study that poverty is a concerning issue, as some students do not have access to the necessary resources to meet their needs. people with disabilities are the most socially and economically marginalised individuals (grue 2024). participants further highlighted that receiving no support from their peers may cause mental health challenges because students with disabilities struggle to relate to others. charles, davie and farai (2024), emphasise that students with disabilities need constant support to manage stress and to cope with mental health challenges and traumatic experiences they often must face. the findings of the study also highlighted that difficulties for students with disabilities in forming relationships can stem from low self-esteem. the finding of this study resonates with the findings of mamas et al. (2020) that students with disabilities find it difficult to develop relationships with their peers, suggesting that they have fewer friends. while it was suggested that students with disabilities are unable to form relationships with others, it was revealed that the contributing factor is the lack of self-esteem. self-esteem is an important individual factor because it influences personality and human health and one factor that impacts self-esteem is social support (lestari & fajar 2020). the psychosocial challenges that students with disabilities face also contribute to their lack of academic progress, including active participation in extracurricular activities. mntambo et al. (2024) stressed that students with disabilities are at risk of failing to complete their studies or failing to complete their university degrees in time. this is because of the difficulty in adjusting to the new environment and its expectations, including the challenges they must face in the university and academically. thus, it is recommended that factors, contributing to the lack of academic progress of students with disabilities, must be identified and given necessary support (chiu et al. 2019). the study also highlights that students with disabilities lack active participation in extracurricular activities. the importance of students with disabilities’ participation in extracurricular activities cannot be overemphasised. these activities are regarded as social and recreational activities that improve their well-being (tugli 2015). at the individual level, students with disabilities face challenges such as low self-confidence, mental health issues and the strain of navigating inaccessible infrastructure. the lack of adequate support negatively affects their academic performance and well-being. providing individualised support, such as counselling and tailored academic interventions, is crucial to addressing these challenges. interpersonal level the study found that students with disabilities face stigma and discrimination from their peers, who often view their disabilities as a marker of difference (hlengwa & masuku 2022). this perception contributes to the exclusion and marginalisation of students with disabilities. according to dollinger et al. (2024), stigma is a negative belief towards a group of people, which often leads to being threatened by others. this resonates well with the findings of this study as participants confirmed that sometimes students with disabilities are treated inappropriately because of the beliefs people have about disability. it is argued that such experiences involve harmful effects on the well-being of people with disabilities and socio-educational inclusion (gallego-ortega & rodríguez-fuentes 2021). furthermore, the discrimination of students with disabilities shows that higher education still poses problems in recognising their rights to equality and for them to be seen. girli et al. (2016) stress that discrimination prevents a group of people from enjoying their fundamental rights and freedom because of their language, religion, gender and physical differences, which in this case is what students with disabilities are experiencing. the study found that students with disabilities felt they were mistreated because of their condition and often overlooked because others assumed they lacked capability. this calls for universities to strengthen their efforts in achieving inclusive education for all which will ensure that all students are engaged including those with disabilities (hayes & bulat 2017). the study also found that the stigmatisation and discrimination of students with disabilities contribute to a lack of confidence and lead to feelings that their emotions and needs are not valued. thus, student affairs practitioners need to make sure that students with disabilities feel a sense of belonging in the university to eliminate the feeling of not being valued, including their stigmatisation and discrimination. although barnes, kelly and mulrooney (2021) suggest that having a sense of belonging is a complex and imperative matter that relates to student attainment, it is more challenging for students with disabilities. however, that should not hinder student affairs practitioners’ efforts to address barriers to promoting diversity and inclusion of students with disabilities, especially barriers related to stigma and discrimination (ramaahlo 2021). the study highlights challenges at the interpersonal level, such as stigma, discrimination and social isolation, which hinder students with disabilities from forming meaningful relationships and engaging in activities. peers’ lack of understanding contributes to exclusion, underscoring the need for awareness campaigns and peer-support programmes to promote inclusivity and understanding among students. institutional level our findings indicate that poor infrastructure and a lack of resources are among the most significant obstacles for students with disabilities on campus (hlengwa & masuku 2022). some lecture venues are inaccessible to these students, leading to missed classes. according to abrahams (2024), the places where students spend most of their time, such as lecture halls, are often inaccessible to those with disabilities. this finding supports the idea that inadequate infrastructure in the university significantly impacts the university experience for students with disabilities. achieving inclusive education requires creating a learning environment that is accessible to all students, regardless of their physical, mental or social abilities, or any special educational needs (messiou 2017). gow, mostert and dreyer (2020) suggest that universities should provide appropriate support to students with disabilities. some students feel they do not receive adequate support from the university, while student affairs practitioners note that available resources limit the effectiveness of the support provided. the university is working to address these challenges, with initiatives such as establishing disability units that offer specialised services to improve access and integration for students with disabilities. for many of these students, the unit serves as their first point of contact and provides essential support for accessing university life (mbuvha 2019). many students with disabilities still feel marginalised because of poor infrastructure and insufficient resources at the university. inaccessible lecture venues, inadequate accommodations and limited support systems hinder their participation. while progress has been made, stronger institutional commitment is needed, with investments in infrastructure, resources and staff training to create a more inclusive environment (hlengwa & masuku 2022). community level the participants in the study also suggested that students with disabilities should be encouraged and allowed to participate in student governance positions to ensure that their voices are heard and seen. the findings of the study emphasised that students with disabilities have the right to participate in leadership roles, just like their peers without disabilities. students with disabilities have a right to participate and lead in cocurricular activities, just like students without disability (tan & adams 2023). the university community lacks active involvement of students with disabilities in leadership roles and extracurricular activities, isolating them and limiting their impact on institutional change. encouraging their participation in decision-making bodies, such as the student representative council, can empower them to advocate for their needs and promote a sense of belonging. societal level kibret et al. (2025) state that students with disabilities in higher education face many challenges. students with disabilities suffer a lack of consistent provision for their needs (ristad et al. 2024). hence, participants recommended potential intervention and prevention strategies to address the psychosocial challenges of students with disabilities. the last theme that emerged from the study is awareness of disability and the provision of adequate resources. universities should listen to the concerns of students with disabilities and involve them in curricular and environmental planning (bartolo et al. 2025; hlengwa & masuku 2022). this would demonstrate that the university is working towards inclusivity and diversity. student affairs practitioners should implement these strategies as they work with students with disabilities. padden and ellis (2015) emphasised that university staff must be empowered with knowledge and resources to support students with disabilities effectively. the study’s findings indicate a need for the university to invest more in raising awareness about disabilities to educate the community. awareness of disability must be made through campaigns and relevant programmes to educate students and staff on disabilities. the creation of awareness of disabilities would play a significant role in eliminating barriers for students with disabilities to participate in university programmes (moriña & orozco 2021). participants also indicated that students with disabilities should be provided with adequate resources to provide for their needs. according to banks (2022), universities have offices and centres that are specifically designed to provide resources to students with disabilities. thus, participants also stressed that it is important to provide adequate resources, particularly in residences, to enhance the living experience for these students (hlengwa & masuku 2022). the disability service offices should play an important role in ensuring that students with disabilities receive direct and indirect support to enhance their well-being and academic excellence (martins et al. 2016). societal stereotypes and cultural perceptions about disability contribute to stigma and discrimination faced by students with disabilities. these attitudes are reflected in universities, emphasising the need for cultural shifts. public campaigns and partnerships with external organisations can challenge ableism and foster a more inclusive society, influencing institutional practices. limitations of the study the study aimed to explore the perspectives of student affairs practitioners and students with disabilities regarding the psychosocial challenges faced by students with disabilities. while involving both groups strengthened the findings, the study has limitations. the representation of student affairs practitioners exceeded that of students with disabilities, and the racial demographics were skewed, with a majority of black participants and only one white participant. in addition, the findings are specific to the durban university of technology in kwazulu-natal and cannot be generalised to other institutions of higher learning. recommendations and future research the recommendations are as follows: this study recommends that policies, which speak to disability, must be revised and these policies must highlight inclusivity and diversity, especially around the stigmatisation and discrimination of students with disabilities. the study recommends that the university must implement programmes and collaborate with students with disabilities to raise awareness on disabilities. student affairs practitioners must be trained in disabilities to ensure that they are well informed about the challenges of disabilities and how to work effectively with students with disabilities. the study also recommends that the university, through student affairs practitioners, must ensure that students with disabilities are provided with all the necessary resources and are given adequate support. the university must also ensure that it invests in the infrastructure development that would be suitable to meet the needs of students with disabilities. the researchers suggest that future studies should focus on the role of student affairs in supporting students with disabilities, specifically addressing their psychosocial challenges. this research would help student affairs practitioners better understand their roles and the interventions needed to assist students with disabilities in overcoming these challenges. conclusion this study examined the psychosocial challenges faced by students with disabilities, drawing insights from both student affairs practitioners and the students themselves. four key themes emerged: inadequate infrastructure and resources, stigma and discrimination, mental health and social issues, and the need for disability awareness and support. guided by the socio-ecological framework, the study emphasised how environmental factors – particularly on campus and in residences – significantly impact the well-being of students with disabilities. the framework’s view that individuals are shaped by their surrounding systems aligns with the findings, confirming that these challenges stem largely from students’ environments and hinder their overall development. the study found that poor infrastructure and a lack of resources negatively impact students with disabilities. the university infrastructure is not conducive for them as they struggle to move freely on campus, especially when they are supposed to attend lectures or move from campus to campus. the study also highlighted that adequate resources should be made available for students with disabilities and these resources are important to them to cope with and experience university life positively. furthermore, students with disabilities experience stigmatisation and discrimination from their peers because of their disability. the findings reveal that disability is still perceived as unusual by some, highlighting the need for universities to support students with disabilities. these students face mental health and social challenges, contributing to a sense of vulnerability and negatively affecting their academic performance and relationships. the study emphasises the importance of creating an inclusive environment to foster belonging and prevent mistreatment. participants proposed interventions such as increasing disability awareness and offering sufficient resources to address these issues. empowering students with disabilities through targeted support can help overcome psychosocial barriers and promote their overall well-being and success in academic settings. the study recommends that the university implements disability awareness programmes and provides sufficient resources to enhance the experiences of students with disabilities. acknowledgements the authors wish to express their gratitude to the student affairs practitioners, and students with disabilities, for their valuable participation in the study. they also extend their deepest appreciation to the student services managers for granting permission to conduct the study, involving the staff and students. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all the authors contributed significantly to this article. a.s.m., d.g., r.t.h. and m.n.s. were responsible for the conceptualisation, review and editing. a.s.m. and r.t.h. carried out the methodology. a.s.m. was responsible for writing the original draft. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support this research article and findings are available in the article and its references. disclaimer the views and opinions expressed in this 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development and education 63(3), 384–394. https://doi.org/10.1080/1034912x.2015.1123232 zongozzi, j.n., 2022, ‘accessible quality higher education for students with disabilities in a south african open distance and e-learning institution: challenges’, international journal of disability, development and education 69(5), 1645–1657. https://doi.org/10.1080/1034912x.2020.1822518 abstract introduction research methods and design results discussion acknowledgements references about the author(s) mbalenhle n. manono department of inclusive education, college of education, university of south africa, pretoria, south africa mary g. clasquin-johnson department of inclusive education, college of education, university of south africa, pretoria, south africa citation manono, m.n. & clasquin-johnson, m.g., 2023, ‘yebo, it was a great relief’: how mothers experience their children’s autism diagnoses’, african journal of disability 12(0), a1101. https://doi.org/10.4102/ajod.v12i0.1101 original research ‘yebo, it was a great relief’: how mothers experience their children’s autism diagnoses mbalenhle n. manono, mary g. clasquin-johnson received: 20 june 2022; accepted: 12 dec. 2022; published: 28 mar. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is an emerging body of knowledge on the lived experiences of parenting a child with autism from a maternal perspective. mothers’ reactions to their children’s autism diagnoses have been identified as a key factor influencing their children’s long-term outcomes. objectives: this qualitative study aimed to explore how south african mothers experience their children’s autism diagnoses. method: telephonic interviews were conducted with 12 mothers from kwazulu-natal to understand their experiences prior, during and following their children’s autism diagnoses. the data were analysed thematically according to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity and compared to the existing scholarship, employing an afrocentric theoretical lens. results: the participants held strong cultural and religious beliefs which influenced the entire diagnosis process. some, who waited a long time, turned to traditional healers or religious leaders. while some reported feeling relieved after the diagnosis, in the sense of at least having a name for their child’s condition, they also reported feeling overwhelmed by the realisation that there is no cure for autism. over time, mothers’ feelings of guilt and anxiety declined, and they became increasingly resilient and empowered as their understanding of the meaning of their children’s autism diagnosis deepened, but many continued to pray for a miracle. conclusion: future research should focus on how to enhance support for mothers and their children during each of the three phases of autism diagnosis: prior, during and following their children’s autism diagnoses. contribution: the study highlighted the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity. keywords: afrocentrism; autism spectrum disorder; culture; diagnosis; maternal perspectives; mothers’ experiences; resilience; ubuntu. introduction autism spectrum disorder (ads), or autism, is a complex, lifelong neurodevelopmental disorder characterised by difficulties related to social understanding and communication, repetitive or restricted behaviours and interests, as well as challenges related to adaptive functioning (american psychiatric association [apa] 2013). zeidan et al. (2022) estimate that one out of one hundered children are diagnosed with asd worldwide. autism has been diagnosed in all races, ethnic and socio-economic groups and appears to be more prevalent in boys than girls (kasari, sturm & shi 2018). the diagnosis of autism includes an evaluation of intellectual and language barriers to learning (pillay & brownlow 2017; tonnsen et al. 2016). scientists believe that both genetic and environmental factors are likely to play a role in autism (apa 2013; sauer et al. 2021). in this article, the authors illuminate the complex journeys of south african mothers whose children received an asd diagnosis. while their experiences resemble maternal experiences globally, the authors seek to understand their lived experiences from an afrocentric perspective, since existing scholarship confirms that early diagnosis combined with appropriate intervention leads to improved developmental and family outcomes (farooq & ahmed 2020). mothers experience challenges caused by their child’s behaviour, influencing both mother and child’s acceptance within their communities (shattnawi et al. 2021). mothers’ challenges are associated with adverse psychosocial impacts because of their perceptions of loss, being judged by others, a lack of social support and personal distress (wayment, al-kire & brookshire 2019). the family’s reactions to the child’s autism diagnosis have been identified as a major factor affecting long-term outcomes (lord et al. 2018:3). consequently, lord et al. (2018) recommend that family members should be empowered with information related to resources and next steps when the autism diagnosis is communicated by healthcare professionals who are specially trained to do so. autism diagnosis frequently occurs after a lengthy, costly and stressful process (clasquin-johnson & clasquin-johnson 2018). upon confirmation of an autism diagnosis, mothers may experience a range of emotions including shock, guilt and relief (depape & lindsay 2015; lopez et al. 2018). researchers characterise mothers’ experiences as a complex journey accompanied by mixed emotions (crane et al. 2016; depape & lindsay 2015). while mothers are partly relieved to receive a diagnosis, they are also overwhelmed by the lifelong implications of autism (lovelace, robertson & tamayo 2018). over time, mothers’ feelings of guilt and anxiety decline, and they become increasingly resilient and empowered as their understanding of the meaning of their children’s autism diagnosis deepens (marsh et al. 2017). a study of 1000 mothers’ experiences of autism diagnoses in the united states of america revealed that mothers were more satisfied if: (1) there was a shorter time lag between initially seeking help and receiving a diagnosis, (2) diagnosis was received at a young age, (3) quality information on autism accompanied the diagnosis, (4) the professional who communicated the diagnosis framed autism in a positive manner and (5) they perceived intervention and support as accessible (crane et al. 2016). similarly, webb et al. (2014) found that mothers tend to be more satisfied when their children are diagnosed during their early years. in addition, if mothers receive information on the nature of autism as well as how and where to access appropriate support, they are more satisfied with the diagnosis (hoogsteen & woodgate 2013; webb et al. 2014). in contrast, if the process of obtaining a diagnosis is protracted, mothers may turn to alternative treatments such as dietary therapies and traditional healers, because of their reduced confidence in the healthcare professionals involved (dougherty et al. 2016). international studies have found that because of their caregiving burden, many mothers of children with autism experience high levels of psychological distress, health-related problems, lower levels of resilience and difficulties in family life, including marital and sibling relationships and family socialisation (lovelace et al. 2018; papadopoulos 2021). some mothers experience chronic sadness and depression because of their children’s social and communication difficulties and challenging behaviour, which leads to self-accusation and negative attitudes towards life (tekinarslan 2018). consequently, researchers have sought to identify protective factors for mothers of children diagnosed with autism (muir & strnadová 2014). hope has been identified as a shielding or protective factor, as feeling hopeful reduces anxiety (oprea & stan 2012). in addition, when professionals establish a good rapport with mothers, their level of satisfaction increases, especially if mothers feel respected and included in decisions that benefit their children (hoogsteen & woodgate 2013). in south africa, there is a dearth of research on mothers’ experiences of the diagnosis of autism, although a few studies have focused on mothers’ experiences of their children’s diagnosis of a disability (duma, tshabalala & mji 2021; gow, mostert & dreyer 2020; mkabile & swartz 2020). it has also been noted that ‘there are no official statistics available on the prevalence of asd among children in lmics [lowand middle-income countries], including sa’ (bakare & munir 2011, cited in erasmus et al. 2022:57). consequently, most of the literature is from developed country contexts. this is the gap that this study aims to address. in this article, the authors will focus on mothers’ experiences prior, during and following their children’s diagnoses of autism. theoretical approach asante (1983) defines afrocentricity as ideas and actions shaped by african values, interests and perspectives. it promotes an appreciation for african identity and culture (mkabela 2015; richman 2018). the goal of afrocentricity is to resituate african people ‘historically, economically, socially, politically, and philosophically’ (asante 2003:3). this study was informed by afrocentricity and the philosophy of ubuntu, which features concepts such as social support, culture, tradition, interpersonal relationships, spiritual interconnectedness and continuity. ubuntu illuminates an african ethos, beliefs, experiences and aspirations (bolden 2014; majoko 2020; mkabela 2015). these concepts should not be viewed as separate; rather, they are closely related, as they emphasise interconnectedness and reciprocity (dolamo 2014; gade 2015). these concepts guided our data analysis and deepened our insights into mothers’ experiences from a communal and contextual perspective (mkhize & ndimande-hlongwa 2014; schiele, gottschalk & domschke 2020). according to african cultural values, anyone who experiences hardships should be treated with respect, receive support and be protected from marginalisation (dolamo 2014). all children should benefit from shared wisdom and community networks of support, because the entire village (community) is responsible for raising all its children (chaplin 2013; gade 2015). human understanding is related to epistemology (ways of knowing) entrenched in culture (baloyi 2015). in addition, african indigenous knowledge systems (iks) formed a central element of this research (asante 1987; muwanga-zake 2010). this compels the authors to question whether to approach autism from the dominant medical perspective of disability and a disease to be cured, or from a social inclusion perspective where the emphasis is on acceptance of diversity and the provision of support. the authors agree with the sentiments of clasquin-johnson (2020a:249), who explored african perspectives on autism, noting that: in this era of decolonial and post-colonial discourse, how can we africans allow the american psychiatric association to be the final arbiter of our (dis)ability? is it not time for us to delve into the question of what it means to have a disability in african society? (p. 249) the authors need to explore how connectedness, spirituality and traditional practices (baloyi 2015) could play a supportive role for mothers and their children. in relation to this study, mothers may question what caused their child to have autism and may attribute autism to bewitchment or a reprimand for not following the expectations of their ancestors (connolly & gersch 2016; mgbako & glenn 2011). african mothers may seek counsel from an isangoma (traditional healer) or inyanga (herbalist) to understand autism (madlala 2012), and those who seek to support them should respect these practices, viewing them as resources to enhance support. african communities should facilitate a sense of belonging through the meaningful social inclusion of mothers and their children with autism. they can do this by eradicating stigma and discrimination associated with disability and difference (eds. nsamenang & tchombé 2012; nussbaum 2013) and creating empowering conditions for children’s learning at home, at school and within their local communities (murungi 2015). an afrocentric perspective therefore holds promise for ‘seeing autism differently’ (jansen 2020:iv) from a neurodiversity and differ-ability perspective (clasquin-johnson 2020b:17). research methods and design this exploratory study adopted a qualitative research approach (choy 2014; creswell 2014; mcmillan & schumacher 2014), to gain a better understanding of mothers’ experiences of their children’s diagnosis of autism. this enabled the authors to answer the main research question, ‘when children are diagnosed with autism, how do their mothers experience the process?’ the qualitative approach allowed for flexibility and increased participants’ freedom during the interviews (maxwell & saldaña 2014; miles, huberman & saldaña 2014) to describe their experiences in as much detail as they chose. in addition, the semi-structured interviews were flexible and allowed the participants to share ‘complex and deep issues’ (cohen, manion & morrison 2018:506) related to their experiences of their children’s autism diagnosis. twelve mothers participated in telephonic interviews, as this was most accessible and convenient for them, and in the context of the coronavirus disease 2019 (covid-19) pandemic, this allowed the authors to adhere to the social distancing regulations in force at the time. the first author called the participants at arranged times, without requiring them to incur any costs. study population and sampling strategy the population of the study was mothers of children diagnosed with autism who were enrolled at a special school near durban, kwazulu-natal. purposive sampling was employed to obtain rich data related to mothers’ experiences of their children’s autism diagnoses in greater depth (ed. given 2012). the mothers who granted informed consent and who volunteered to participate in the study were between the ages of 32 and 48 years, and their children were between the ages of 7 and 9. prior to the interviews, each participant received a handwritten letter from the first author detailing the nature and purpose of the study. table 1 outlines the profile of the twelve mothers who participated in this study. table 1: profile of the participants. with a single exception (mother 5), all the participants were raising their children without the daily presence or involvement of their fathers. seven mothers were identified as single, two as divorced, one as married and two as separated. the divorced and separated mothers noted that their marital relationships had ‘drifted apart’ following their children’s autism diagnoses. all the children spent an extended period on the special school’s waiting list before they were admitted. data collection during data collection, which was conducted in 2021, the authors complied with strict covid-19 restrictions and protocols. individual semistructured, in-depth interviews were conducted with the participants in their preferred language, either english or isizulu, through telephone interviews that were audio-recorded and later transcribed verbatim and translated into english where necessary. the semistructured interviews allowed for an open, in-depth discussion on the 12 mothers’ experiences of the three phases of diagnosis. the first author put the mothers at ease and obtained their consent and trust before proceeding with the interviews, as recommended by cohen et al. (2018). to ensure consistency, a semistructured interview scheduled was followed. the questions were developed according to the main research question and related research subquestions, aimed at gaining a deeper understanding of mothers’ experiences during each of the three phases of the diagnostic process. data analysis the authors relied on thematic analysis to analyse the data, focusing on recognising, evaluating and identifying patterns within the data according to the six steps proposed by braun and clarke (2021). to familiarise themselves with the data, the authors repeatedly read each participant’s transcribed and translated interview and assigned initial codes. this was followed by searching for possible themes, keeping the seven concepts related to afrocentricity and the implications of iks in mind. thereafter, the authors carefully reviewed and refined the emerging themes and then defined and named them. finally, the authors compiled a research report on the findings of the study. in addition, to ensure trustworthiness, the authors followed denzin and lincoln’s (2018) recommendations for credibility, dependability, transferability and confirmability of the study. study context the study was conducted at a special school for learners with a range of barriers to learning. at the time of data collection, there were 23 learners diagnosed with autism at the school. the mothers of 12 of the learners with autism participated in the study. it is worth noting that all 12 mothers were dependent on the public health system. ethical considerations ethics clearance was sought and obtained from the college of education’s ethics review committee at the university of south africa (ref. no. 2020/11/11/43638430/33/am). the authors undertook to protect the participants from harm and ensure their privacy and confidentiality. the authors obtained permission from all 12 mothers to access documents such as their children’s learner profiles and medical records. these documents provided confirmation and detailed information on their diagnoses of autism as well as recommendations for school placement. when inviting the 12 mothers to participate in the study, m.n.m. explained that there was a possibility that their participation in the study could cause distress related to sharing their past experiences of the process of their children’s diagnosis of autism (rudestam & newton 2015). the participants were advised of the availability of counselling by the school psychologist free of charge if the interview became too stressful (ratcliff 2015). none of the participants took up this offer. participants were further advised that they could withdraw from the study at any time without penalties. throughout data collection, there was a great awareness of the need to remain respectful and compassionate when interacting with the 12 participants to advance their human rights and social justice, which the authors strive for in the field of inclusive education. as discussed above, after the initial contact, all interviews were held telephonically to comply with the coronavirus disease 2019 (covid-19) restrictions in place at the time. results three research themes were generated from the data analysis performed by the authors: (1) mothers’ experiences prior to diagnosis, (2) mothers’ experiences during the diagnosis process and (3) mothers’ experiences following their children’s diagnoses. in the sections below, each theme and related subthemes will be discussed. theme 1: mothers’ experiences prior to diagnosis analysis revealed that all mothers had experiences prior to the diagnosis that influenced them to be intrinsically and/or extrinsically motivated to seek a diagnosis. at this stage (i.e. prior to the diagnosis), they were uncertain what the diagnosis would be. the following subthemes related to mothers’ experiences prior to their children’s autism diagnoses were: (1) intrinsic factors and (2) extrinsic factors. the intrinsic factors included psychological and emotional factors. the extrinsic factors included the mothers’ experiences of family and community members’ reactions to their children’s behaviour prior to diagnosis. intrinsic factors many of the mothers described feeling ‘confused’ and ‘frightened’ by their children’s early behavioural difficulties and developmental delays, as they struggled to reconcile it with their children’s typical appearance. for example, one mother described how her child ‘stared at objects endlessly’ and ‘spun around until he was dizzy’. several mothers said that although they instinctively knew that something was different, their concerns were frequently dismissed by health professionals. mothers’ instincts were a significant intrinsic factor that motivated them to pursue a diagnosis. mother 1 described her experiences as ‘completely chaotic and difficult’, as seen below: ‘it was completely chaotic because i was still dealing with being a first-time mother to a boy who was not developing at the normal pace. it was difficult, especially when you live far from hospitals and clinics in the location. while we were trying to get a diagnosis, we weren’t doing any therapies.’ (mother 1, age 43, single) mother 7 described her instinctual awareness of her child’s problems. ‘there was just no language, but he cried a lot. he was short-tempered and he didn’t do what other kids do at his age. he was staring abnormally at one thing in the house. it looked like he was going to collapse, or he had lost his mind. i just knew … that something was not right with him.’ (mother 7, age 36, divorced) the extracts above reveal that the mothers experienced confusion, uncertainty and worry prior to their children’s autism diagnoses. following the semistructured interview schedule, the mothers were guided to reflect on their emotions prior to their children’s autism diagnoses. they used the words, ‘disturbed’, ‘anxious’, ‘stressed’, ‘numb’, ‘frustrated’ and ‘hopeless’ to describe their emotions. mother 3 articulated her confusion and uncertainty about her child’s developmental delays: ‘on the report was written “global development delay.” i took him to another hospital to attend speech therapy, physiotherapy, and all that. i received an appointment for three months later. i was not sure what was happening, just that he was delayed.’ (mother 3, age 45, separated) mother 10 blamed herself for ‘overlooking the signs’, as revealed below: ‘i personally wish i never just sat hoping that he would get better and overlooking the signs before i had him assessed. i thought maybe it was in his father’s family … as his uncle is a stutterer.’ (mother 10, age 42, separated) these excerpts provide insight into the mothers’ emotions prior to their children’s diagnoses of autism. mother 10 admitted that she initially ignored the warning signs and tried to find someone in the family with whom to associate her child’s behaviour. in the next section, mothers’ experiences of family and community members’ understanding of their children prior to diagnosis will be presented. extrinsic factors as previously mentioned, all 12 mothers recognised that their children’s development was atypical or ‘delayed’. mothers’ experiences included the reactions of family and community members to their children’s behaviour, which motivated them to seek a diagnosis. they sought advice from the elders in their families and communities. the feedback they received from the elders constituted a significant extrinsic factor that motivated them to seek a diagnosis. these reactions provide some insight into family and community members’ understanding of disability and difference. mother 2 shared that she felt ‘disturbed’ by her child’s father’s comments as well as her child’s atypical behaviour: ‘i was disturbed in my mind because his father likened him to a puppy because he was jumping on his toes, making funny noises, getting into people’s houses to steal food, and having no speech … he started making this high pitched “iiiiiiiii” sound.’ (mother 2, age 38, single) mother 7 also described how she was influenced by the father’s remarks to delay seeking a diagnosis: ‘his father insisted that he was deaf, but i was not convinced until the audio screening. i took him to the hospital, nine months later. they said that they needed to do further tests because he failed the screening.’ (mother 7, age 36, divorced) mothers 1, 3 and 6 discussed the lack of understanding in their respective religious communities: ‘we travelled by bus and would go to the hospital three times a week, but we weren’t seeing the correct people. my neighbour would take me to church where they did not understand my son.’ (mother 1, age 43, single) ‘some family members like his aunt and his uncle never understood what was going on. “ingane ayilashwe!” [they demanded that the child must be given proper herbs as he carries luck and truths for the family.] they said that i must have caused him to be so.’ (mother 3, age 45, separated) ‘my older brother told me that he is noticing something about him and that i should “fanele kuyohlolwa” [consult a sangoma] because sometimes he groans like an animal. maybe, “ubiziwe,” he has a calling to be a sangoma and that has to be respected.’ (mother 6, age 36, divorced) these excerpts reveal the crucial role of family and community support. mother 3 noted that when she turned to her family for support, they blamed her for her child’s difficulties since they believed that ‘i must have caused him to be so’, while also recognising that the child ‘carries luck and truths for the family’. mother 6 was advised by her brother to ‘consult a sangoma’, noting ‘that has to be respected’. theme 2: mothers’ experiences during the diagnosis process when analysing mothers’ experiences during their children’s diagnoses of autism, two sub-themes emerged, namely: (1) diagnosis is a lengthy, stressful process, (2) relief to receive a diagnosis but worried about the future, because of the lack of guidance on intervention and support. diagnosis is a lengthy, stressful process several mothers indicated that they experienced most of the health care practitioners with whom they interacted during the diagnostic process as ‘unsupportive’ and ‘lacking in compassion’, which exacerbated their feelings of hopelessness and confusion. some of the participants characterised their emotional distress as ‘extreme anxiety’ and ‘intense worry’, noting that the terminology carelessly used by the professionals intensified their confusion instead of providing clarity about autism and proving support. some of the health care professionals speculated about the possible causes of the child’s behaviour without providing clear direction. this theme was especially noticeable in the following comments by mothers 2, 6 and 7: ‘i was disturbed in my mind. for the whole first year, i was just numb. i did not even have the energy to go up and down for consultations with him. the word “autism” was all over his reports from the hospital. i would just stare at it and cry.’ (mother 2, age 38, single) ‘i waited four months for an appointment. i took him to a so-called therapist, an occupational therapist. she checked him, and said he is fine. she said he can’t sit still and can’t concentrate, which i had also observed. she then said he might have adhd [attention deficit hyperactivity disorder].’ (mother 6, age 36, divorced) ‘it took us close to 8 months to get a consultation date with a paediatrician.’ (mother 7, age 36, divorced) the extracts above reveal the lengthy process of seeking a diagnosis. not only was diagnosis a lengthy process, but it was also experienced as stressful by the mothers. key to this was the cold, impersonal attitude of medical professionals and the inflexible rules that must be followed: ‘i had to attend the specialist though she did not tell us what she was doing with the boy, and i had to help her to calm him down so that he could sit on the table. i don’t know english; neither does the child so we were not following nje [laughing].’ (mother 6, age 36, divorced) ‘the doctor told me that he is hyperactive and so because he cannot concentrate, they will have to put him on medication, which i honestly wonder if it works because boy is the same. they gave me appointment dates far from each other. even when the pills were messing him up, i could not just walk into the hospital, as i only had to go on my appointment dates.’ (mother 2, age 38, single) indeed, mothers had to turn to unorthodox practices to get help: ‘you see at the hospital, now you will come with the child, maybe the medication has overturned his stomach, you must wake up at 4 am to be on the queue. sometimes they tell you that the risperdal is running out, come back three days later. you just have to know someone that knows someone inside in order to access help at times. you know how public hospitals are, sisi.’ (mother 1, age 43, single) ‘there is a big public hospital in our zone behind the complex where we live. well, i don’t have a problem saying it here, we live in south africa ruled by the ruling party, so i would not go on the lines because of connections inside [giggles]. one nurse friend of mine organised for me to get his medication straight after bloods. well, it’s the way it goes.’ (mother 8, age 37, single) relieved to receive a diagnosis but worried about the future the diagnosis was not accompanied by direction for their children, because the mothers were not provided with quality information on autism, nor was autism framed in a positive manner. instead, they were more confused about the way forward for their children. ‘yebo, it was a great relief. it was like, finally, we know the name of the disease and what it is called. now i know what is abnormal about my son. what a breakthrough. but questions still remained whether it is curable or not.’ (mother 1, age 43, single) the mothers reported getting little guidance on what steps would follow diagnosis. once again, they had to educate themselves by turning to the internet, which was limited by the high cost of data. ‘i didn’t know what to do because nobody guided me on what the next step was and that was frustrating.’ (mother 7, age 36, divorced) theme 3: mothers’ experiences following their children’s diagnoses based on the data analysis, two related subthemes were identified: (1) knowledge of autism and (2) personal adjustment. each subtheme is discussed in more detail in the sections that follow. knowledge of autism the mothers described how following their child’s diagnosis, they searched for the meaning of ‘autism’, constantly asking, ‘what is the zulu name for this thing?’ and ‘who has had it before?’ they turned to the elders in their families and communities and to traditional healers to undertake ‘ukuyobhula’ or ‘ukuyozwa ababonayo’ (those who can see through bones and make a diagnosis). again, the authors see an intrinsic–extrinsic division, where the mothers’ search for knowledge was intrinsic, while there was also the extrinsic influence of other people’s knowledge and acceptance. for mother 10, this stage actually preceded diagnosis and prompted her to seek formal acknowledgement of what she had discovered. ‘someone mentioned autism south africa. i googled them even though i still didn’t comprehend what it was, so i didn’t worry much about it. then after a while, as i read up on autism, i realised “yabona” [you see], it clarified some of the signs and then i decided to have my son assessed.’ (mother 10, age 42, separated) for the other participants, the information-seeking phase started after diagnosis: ‘your heart is aching, and you wish to gather as much information as you can … i read all these books on parenting, and i watched a show on tv. the presenter said that when your child is tired, he won’t make eye contact. besides it is only respectful to teach them to show respect by not making eye contact with the elders.’ (mother 1, age 43, single) ‘i was committed to getting every single piece of information i possibly could on autism. gosh, i just sat on the internet every moment after my son went to sleep. i was on my phone using the last money from his government grant. until four or five in the morning, i was doing research on autism. but it was difficult to understand, and the data was expensive.’ (mother 2, age 38, single) ‘my boy freaked me out. he would be like a robot, not talking, not smiling … at the time of the diagnosis, as this was my first child, i was lucky to come across autism south africa on the internet. i emailed them and described the challenges i was facing. as a young mother, i took advantage of technology and started reading on the search engines.’ (mother 8, age 37, single) these extracts reveal that following their children’s diagnoses, the mothers searched for the meaning of ‘autism’. since quality information did not accompany the diagnosis, they had to find information on their own and were intrinsically motivated to do so. however, there were also extrinsic sources of information, remarks and behaviours of community members, which were largely informed by iks. ‘yazi [you know what], it was at the crèche where they did not accept my son because he kept messing in his trousers. i felt there was an implication that i didn’t do enough.’ (mother 8, age 37, single) ‘in these past weeks my father, a traditional doctor himself, told me that i need to work on my parenting. see, if you ignore a lot of family issues, it manifests through the child. my father said that the elders in the family that have now passed, are living through this child and i should not force the child to speak our language as he is not of this world.’ (mother 10, age 42, separated) ‘i was devastated, but the small section of my location [township] was already helping me to ensure the safety of my son because in a twinkling of an eye he would run into the road or even into another person’s house eating without permission. people accepted him though others took time to understand him.’ (mother 11, age 33, single) autism awareness and acceptance were very limited in their families and communities. as seen above, they were blamed and criticised. mother 8 noted, ‘i felt there was an implication that i didn’t do enough’, while mother 10 noted her father’s comments:‘… i need to work on my parenting’. she added that ‘family issues’ ‘manifest through the child’. however, mothers 10 and 11’s comments also suggest acceptance. personal adjustment the mothers described their difficulties related to explaining their child’s diagnosis to others. in some cases, the mothers felt criticised that their children’s behaviour was attributed to their inadequate parenting skills. over time, as support from close family members and friends (as well as their own understanding of autism) increased, they were less concerned about the opinions of others, especially strangers. ‘my colleagues at work and my sister understand my child’s condition. other people in the street or at the supermarket don’t understand when he has a tantrum. they look at me very funny. and i know when he is throwing a tantrum that people will look at me.’ (mother 7, age 36, divorced) religious and spiritual resources were employed by the mothers to supplement whatever medical and therapeutic interventions were available to them: ‘the mothers whom i pray with at the complex knew my son and their kids knew him too and that he is hyperactive. also, other people started feeling empathy for me because they could see that i was stressed. sometimes they would take him to the park to play with their kids because, ya i do not know how they knew that i was tired and needed rest and sleep, nya … we go to church every day. my faith is strong. miracles do happen but i don’t feel so much pressure as my community members later started enquiring about autism and some would tell me that he is intelligent but can’t be still.’ (mother 8, age 37, single) ‘i take him to miracle sundays. they told us to bring him consistently in the afternoons to claim his miracle. during sunday school, he gains a lot because he socialises with other kids on the jungle gym. that is the only outing he ever takes with me [breathing heavily].’ (mother 10, age 42, separated) ‘church is the one place, i tell you, where we are greatly accepted. social events like weddings, nah forget it. there [at church] he gets prayed for and i receive a lot of counselling for the entire week. it strengthens me.’ (mother 11, age 33, single) ‘i decided yes, “kuzohlatshwa” [goat slaughtering] and the older men would speak and report that he is here and alive, that they should let go of him to be a normal child. we still do this to help him from time to time. he does say syllables now. could i be winning?’ (mother 2, age 38, single) ‘i won’t stop “ukumhlabela” [meaning animal slaughter] and put the wristband around his hand because you know four years ago, he did not say a sound but four years later as i try to sacrifice every year, he is starting to speak a language that nobody understands. he can point at water and say “yuomeme.” i think it’s the language known to the elders as they watch us.’ (mother 3, age 45, separated) discussion in the context of the current study, autism diagnosis is a complex process that does not occur exclusively within the medical model of disability. the 12 participants held strong cultural and religious beliefs which influenced their experience of the process in all three phases, leading them to explore all avenues at their disposal, whether medical or traditional, and all forms of possible support. while dougherty et al. (2016) contend that mothers who wait a long time for a diagnosis tend to lose confidence in the health care system and turn to traditional healers, this was not the case. instead, the mothers combined the medical process with iks and religion by seeking counsel from isangoma or inyanga (madlala 2012) and/or christian worship. several mothers stated that their most urgent question was whether their children’s autism was attributable to bewitchment or their ancestors’ displeasure (cf. connolly & gersch 2016). the respondents did not necessarily refer to the concept of ubuntu directly; in fact, the data points to an impression that they experienced a lack of it. they found themselves isolated, without family, community or social acceptance, barring the occasional relative, colleague or friend. instead, some were urged to find a boarding school since the community regarded autism as an illness to be cured and blamed the mother for the child’s challenges. furthermore, the absence of coordinated collaboration among the different stakeholders increased mothers’ distress. theme 1: mothers’ experiences prior to diagnosis the mothers were intrinsically and extrinsically motivated to seek a diagnosis because their children’s behaviour affected their acceptance within their communities (shattnawi et al. 2021). this led to confusion and uncertainty prior to diagnosis (depape & lindsay 2015; lopez et al. 2018; lovelace et al. 2018). they turned to elders in their families for moral support and guidance when they noticed their children’s atypical behaviours and developmental delays. although mother 1 self-identified as a ‘first-time mother’, she recognised that her son was ‘not developing at the normal pace’. the mothers’ experiences were consistent with teague et al.’s (2017) findings related to mothers’ fears of stigmatisation. these mothers were largely excluded from the benefits of collective wisdom and community support networks (dolamo 2014). in many instances, those to whom they turned failed to provide social support by disregarding the interconnectedness of their reactions to the mothers’ hardships. this challenges the afrocentric perspective and suggests that this model requires adjustment. it is also significant that all but one of the 12 mothers were raising their children without the daily presence of their children’s fathers. consistent with the findings of lovelace et al. (2018) and papadopoulos (2021), five of the mothers reported that their children’s autism diagnoses had adversely affected their marital relationships, which had ‘drifted apart’. despite being absent, the children’s fathers’ negative comments appeared to increase the mothers’ anxiety, motivating them to seek a diagnosis. the mothers were responsible for executing the fathers’ advice; for example, mother 1 recalled that her child’s father asked her to ‘do all the rituals required for his surname, so i took him to his father’s family for all that to be done’. the authors, therefore conclude that the lack of fathers’ involvement conflicts with the notion that ‘it takes a village to raise a child’, although they played a key role in reinforcing cultural beliefs and practices. the authors intend to explore these gender issues in a later publication. theme 2: mothers’ experiences during the diagnosis process as noted by weiss et al. (2016), professionals should provide appropriate support to reduce mothers’ anxiety and stress. many of the health care professionals with whom the mothers interacted appeared to be unfamiliar with the characteristics of autism (as in the case of the therapist who initially suggested adhd) and failed to prepare mothers for the possibility and implications of an autism diagnosis. the zulu cultural emphasis on ‘umuntu umuntu ngabantu’ (meaning you are because others are), applies to the crucial role of health care professionals. while this is aligned to afrocentrism, it is also firmly recommended in the international scholarship (lord et al. 2018; wayment et al. 2019). in these mothers’ experience, most health care professionals were unable to explain autism terminology (in particular, to give it a name in isizulu) or provide information related to therapeutic and educational interventions as recommended by crane et al. (2016) and webb et al. (2014). the most direct expression of this was by mother 7: ‘i didn’t know what to do because nobody guided me on what the next step was and that was frustrating’. several mothers pointed out that healthcare professionals lacked compassion because they could not relate to the mothers’ struggles. their lack of empathy suggests that the health care professionals involved in diagnosis had not received adequate training on how to communicate a diagnosis as recommended by hoogsteen and woodgate (2013). since many of the mothers were not treated with respect and compassion, nor were they provided with information that framed autism positively, they were dissatisfied with the process (lord et al. 2018). consistent with lovelace et al.’s (2018) findings, some mothers expressed relief to finally obtain a diagnosis after a frustrating, lengthy and stressful process because it gave a name for their child’s challenges, even though it failed to provide direction. it is also worth noting that all 12 mothers were dependent on the public health system, but the diagnosis process in the private health system is as lengthy because of a shortage of qualified personnel, and it is equally without direction (clasquin-johnson & clasquin-johnson 2018) but much more costly. theme 3: mothers’ experiences following their children’s diagnosis mothers’ reactions to their children’s autism diagnoses have been identified as a key factor influencing their children’s long-term outcomes (lord et al. 2018). for this reason, mothers need to receive appropriate care and support, particularly since they are expected to be at the centre of their children’s intervention. as previously noted, prior to the children’s diagnoses, all but one of the mothers had limited prior knowledge of autism. they were unprepared for the shock of the diagnosis and experienced a general lack of autism awareness within their families, and communities. while four mothers received support from family members, neighbours and colleagues, this was uncommon. several mothers described that animal sacrifices were frequently made within their families to heal both the child and the mother. when seeking advice from individuals in key positions within their communities, the mothers needed to approach predominantly male izindunas (chiefs), abakhuzis (commanders), izinyangas and ababonayos (seers), since very few sangomas are women and mothers. it would therefore be crucial for these traditional leaders to understand mothers’ support needs, as this understanding would unlock (facilitate) ubuntu. clearly, patriarchal power relations are a prominent barrier to acceptance. as stated above, the authors intend to explore this more deeply in an upcoming article. when the mothers in this study sought religious support, the focus was placed on ‘healing’ rather than understanding their children’s challenges and support needs. at the african-initiated christian churches to which most of the participants belonged, disability was viewed as a condition that required healing (cf. amanze 2019). despite this conflict between the religious and the medical positions, the churches became an important avenue of psychological and emotional support for the mothers. this is consistent with the recommendations of muir and strnadová (2014), as well as oprea and stan (2012), as it gave them hope for their children’s future. all 12 mothers became increasingly resilient as they educated themselves on the meaning of their children’s autism diagnoses (cf. marsh et al. 2017). only one mother seemed to be aware of autism south africa, a national nongovernmental organisation that promotes autism awareness, and pose questions about autism to them via e-mail. three mothers described how they conducted google searches to learn more about autism. this is consistent with the literature that following the children’s diagnoses, the mothers were determined to learn as much as possible about autism (kiami & goodgold 2017). consequently, all 12 mothers managed to enrol their children at an appropriate special school that accommodated children with autism. implications although this study was conducted in kwazulu-natal and the participants were 12 zulu mothers of children diagnosed with autism, it has raised awareness about the urgent need for culturally appropriate support for all persons diagnosed with asd. autism should be destigmatised through autism awareness programmes, targeting all stakeholders, including health, education, traditional, cultural and religious organisations, with useful information on the nature of autism, as well as how to access educational and therapeutic intervention and support within local communities (hoogsteen & woodgate 2013; webb et al. 2014). this study reinforced the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity (majoko 2020; mkabela 2015). south africa needs a systemic approach to autism diagnosis (clasquin-johnson & clasquin-johnson 2018), in which all the relevant stakeholders should be involved. this will ensure that mothers and their children derive the maximum benefit from autism interventions that respect religious and cultural diversity. in the short term, professionals at the frontline of the medical diagnosis process, as well as those at the frontline of cultural, traditional and religious support structures and institutions, require training on the characteristics of autism and the presentation of diagnosis, as they are vital in providing pre-, duringand post-diagnosis support to mothers and their children. acknowledgements the authors gratefully acknowledge the critical feedback received from dr l.p. khuzwayo-magwaza on the draft manuscript. competing interests the authors declare that they have no financial 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martha geiger postal address: po box 19063, tygerberg 7505, south africa dates: received: 09 may 2012 accepted: 17 aug. 2012 published: 18 sept. 2012 how to cite this article: luger, r., prudhomme, d., bullen, a., pitt, c. & geiger, m., 2012, ‘a journey towards inclusive education: a case study from a ‘township’ in south africa’, african journal of disability 1(1), art. #15, 5 pages. http://dx.doi.org/10.4102/ ajod.v1i1.15 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. a journey towards inclusive education; a case study from a ‘township’ in south africa in this case study... open access • abstract • introduction • ethical considerations    • the journey    • outcomes       • reflections • recommendations • acknowledgements    • competing interests    • authors’ contributions • references • footnotes abstract top ↑ the purpose of this case study was to relate part of the journey to appropriate education for two young children with physical disabilities in a low socio-economic peri-urban informal settlement – or ‘township’ – in south africa. the part of the on-going journey described here spanned four-and-a-half years and included the two children, their families, their teachers, their community and a small team of rehabilitation professionals working for a non-profit organisation in the area. the rehabilitation professionals’ goals were to provide support for the children, their families, their current special care centre and the school(s) they would attend in the future. the steps from the special care centre, to a mainstream early childhood development (ecd) centre for both of them, and then on to (a) a school for learners with special educational needs (lsen) for one child and (b) a mainstream primary school for the other, are described. challenges encountered on the way included parental fears, community attitudes and physical accessibility. practical outcomes included different placements for the two children with implications and recommendations for prioritised parent involvement, individual approaches, interdisciplinary and community-based collaborations. recommendations are given for clinical contexts, curricula and policy matters; for research and for scaling up such a programme through community workers. introduction top ↑ south africa is a leader in terms of progressive policies relating to persons with disabilities. in addition to ratifying – and therefore accepting as legally binding – the united nations convention on the rights of persons with disabilities (united nations 2008), the principles of inclusive education clearly prescribed in the national department of education’s white paper 6 on inclusive education (department of education 2001). in brief, inclusive education is based on the premise that all children can learn, and it respects the fact that there are many differences in the ways in which children learn. all children’s educational needs should be met and to do this, attitudes, behaviours, teaching methods and curricula need to be addressed. the focus needs to be on the individual strengths of each child, to maximise participation and minimise barriers to learning (department of education 2001; ogot, mckenzie & dube 2008; pillay & di terlizzi 2009). yet access to inclusive education for children with disabilities in south africa remains full of diverse challenges (ogot, mckenzie & dube 2008; pillay & di terlizzi 2009). for those affected by the additional burden of poverty and lack of resources, this is particularly so. the purpose of this case study is to recount four years of the journey to appropriate inclusive education for two young children with physical disabilities living in a low socio-economic, peri-urban informal settlement, or ‘township’, in south africa. in keeping with an ecological systems approach (garbarino & ganzel 2000; pillay & di terlizzi 2009), it involved their families, their teachers, their community and a small support team of rehabilitation professionals (which included the authors of this paper). the rehabilitation support team included an occupational therapist, a physiotherapist, a teacher and more recently a community worker, all employed to work part-time in the area by the chaeli campaign, a non-profit organisation (npo). the chaeli campaign is actively involved in mobilising children with disabilities in diverse communities across southern africa. the inclusive education programme with its core focus on sustainable inclusion at early childhood development (ecd) level is one of its six programmes. our journey with these two children confirmed earlier literature emphasising the need to incorporate a parentor family-centred approach (dunst, bruder, trivette & hamby, 2006; turnbull, summers, turnbull et al. 2007); to assist the relevant teachers towards a positive attitude to inclusive education and to build strong interdisciplinary collaborations (silverman, hong & trepanier-street 2010). here, it resulted in different outcomes for the two children; one child was eventually integrated into a mainstream primary school in his area, while the other child was integrated into a boarding school for learners with special educational needs (an ‘lsen school’1). ethical considerations top ↑ this case study falls into the realm of reflective practice (schön 1995), rather than a formally planned research study. the two children’s stories developed alongside each other, drawing the interventionist team’s attention to the value of sharing the journey with others in this case study paper. the fact that both children described here happen to be boys, is coincidental and not at all representative of the girl-led chaeli campaign’s focus,2 or the interventionist team’s general client profile.in order to request consent from the children and their parents to write up this case study, the community worker and the occupational therapist met with each child and one of his parents. a slight adaptation of the stellenbosch university, faculty of medicine and health sciences’ human research ethics consent form for children (translated into xhosa by the community worker) was used to guide the discussion. both children and their parents understood the purpose and process of the case study report. both boys wanted their real names to be used rather than pseudonyms, but details identifying the context were removed in order to keep other role players anonymous and to preserve the confidentiality of some sensitive case information. the journey the two xhosa boys, part of whose respective journeys is described here, were living with their mothers, the father and an aunt respectively, and one sibling each, in informally constructed dwellings (or ‘shacks’) in a low-socioeconomic, informal settlement (‘township’) in the larger cape town area, in south africa. ayabonga was born two months prematurely in 2004. he was slow to develop (e.g. he sat at 14 months and crawled at the age of two years) and was diagnosed with spinal muscular atrophy (sma) type 2. this is a rare disease where there is an abnormality of the anterior horn cells in the spinal cord due to a chromosomal defect. ayabonga is a friendly child who eats independently, is a skilled driver of his power wheelchair and has a special interest in cars (and definite ideas about which brand he wants to drive when he is older!). anga was born a year after ayabonga in 2005, and when he was one year old, he was diagnosed with cerebral palsy (damage to the growing brain). he has spastic diplegia, meaning his lower body is more affected than his upper body. anga is a determined child who is independent in self-care tasks and loves running around and playing soccer – albeit with an unsteady gait. our rehabilitation team first met ayabonga and anga early in 2008, when they were four and three years old and this paper describes their journeys until they were eight and seven years old, respectively. at the time of first meeting them, they were both enrolled at an npo-run special care centre for children with severe physical and/or intellectual disabilities in the township where they lived. this township is a vibrant, largely xhosa speaking community. it is a low socio-economic semi-formal settlement on the outskirts of cape town, with a mixture of formally built and informally constructed dwellings (or ‘shacks’), serviced mainly by communal taps and toilets. there is a mixed infrastructure of some formal roads and informal tracks, and although there is no formal rail or bus service, a regular but informal taxi service (using 12-, 16or 21-seater minibuses) transports residents to the surrounding areas. there is one primary school, several formal and informal crèches or preschools, a community hall, two play parks, several churches, a primary health care clinic and several small ‘spaza’ shops selling basic food items and ‘shebeens’ that sell liquor. many of the crèches, churches, spaza shops and shebeens are not registered – and even resident numbers and demographics are not formally known. early assessments and team reflections indicated that both children had the intellectual capacity for more formal education. however, given their under-resourced circumstances, together with their physical and to a much lesser degree learning challenges, it was felt that they would benefit most from first obtaining a solid foundation in the supportive and specialised environment of the special care centre until they reached the age of six and five years respectively (grade r age3). during the subsequent two years, both children became more independent in feeding, toileting, communicating effectively and interacting confidently with their peers and carers. the therapists also provided guidance in terms of appropriate therapeutic physical activities and a graded school-readiness programme implemented by the centre’s staff and volunteers. this included activities such as cutting, drawing and perceptual activities. ayabonga also needed a spinal brace and a power wheelchair while anga needed ankle foot orthoses (afos). the therapists facilitated the provision of these assistive devices for independent mobility and correct positioning through state and other resources. throughout this process the parents were involved and kept up to date about the children’s progress, through meetings and written reports. they were also encouraged to continue any work done at the centre during holiday times to maintain the continuity of progress made. at the same time, the therapists continued to build relationships with the local mainstream school and local schools for learners with special educational needs (lsen), by their broader programme of presenting therapeutic groups and treating learners identified as needing therapy. the teacher on our team also presented a programme she had developed to the teachers at the local mainstream primary school, aiming to increase understanding and acceptance of learners with special needs. the programme comprises lesson plans focussed on a range of special needs, graded from grade 1 to grade 7, and can be used as part of the life orientation learning area for each grade. a year later, multidisciplinary evaluations by various parties once more confirmed that the children should attend a mainstream grade r. the children and their families visited several recommended centres to look at the available mainstream pre-school options. the parents were initially hesitant about moving their children away from the security of the special care centre as they were worried about discrimination in the new placement and the possibility of decreased therapy and care. these issues were addressed in discussions and through the commitment to an on-going support system for the children, and so the parents agreed to the move, and both children were enrolled in a grade r class at a local mainstream preschool in january 2010. the transition to this particular pre-school was eased by firstly, the school’s commitment to include children with special needs and secondly, their previous experience of doing this successfully with two girls with special needs supported by the therapists of the chaeli campaign. in order to prepare and support teachers for the arrival of the two boys, discussion meetings were held in which detailed information was shared about the children’s respective conditions, about their strengths and difficulties and in which areas they could expect the children to cope with at the level of their peers, and where they needed to be sensitive to special needs and extra help needed. to enable ayabonga to be independently mobile at school, the school had to be made physically accessible for his power wheelchair. for example, the therapists made recommendations and the school sourced funding through the local branch of rotary international. a builder was contracted to build a ramp for access to the main entrance and additional pathways were made for wheelchair access to the playground. in addition to these environmental adaptations, which will have long-term implications for including learners far beyond ayabonga’s current needs, the teachers were assisted with practical issues relating to the correct use and care of the two children’s specific assistive devices. the therapists initially visited the children at the preschool weekly for therapy and once it was ascertained that the teachers and peers were managing to include the children in all activities, therapy visits were reduced to monthly. the teachers and peers came up with some workable solutions as challenges arose; for example, they moved ayabonga’s class to the biggest available area (previously the dining room) where he had more space to manoeuvre his wheelchair; made use of a community volunteer to assist ayabonga to do toilet transfers and moved anga to ayabonga’s class when he struggled being away from his friend. the school had the reassurance that the therapists were available for support between visits and to assist on an on-going basis. such collaborative problem-solving included suggesting that anga sit near the wall during ring time to help him get up independently off the floor afterwards and to make use of a peer to assist ayabonga to finish cutting tasks rather than the teacher having to do this. when the staff expressed concern about the two children being teased about their disabilities, the chaeli campaign teacher was able to assist the class teacher’s efforts by facilitating an experiential session with the children, specifically addressing the diversity of the children in the class and encouraging acceptance of differences. both boys managed well in grade r and during the year they and their parents were again supported to investigate their options for grade 1 the following year, and to find the school that would best meet the needs of each child as well as those of their families. the collaboration with resource persons, such as teachers and other parents of children with disabilities from within the community was on-going (as also described by karangwa, miles and lewis 2010). an additional milestone event at this time was the chaeli campaign’s employment of a community worker from the area. living in the same community, and being the mother of a little girl with cerebral palsy herself, she was able to give crucial ‘insider’ support to the children, their parents and the schools – especially in answering questions, language translation (between xhosa and english), providing explanations in this cross-cultural situation, and addressing issues as they arose in the times between therapists’ visits. outcomes it was initially envisioned that ayabonga would go to his local mainstream primary school, possibly with a facilitator, but his mother chose to send him to the nearest lsen school with boarding facilities catering specifically for children with physical disabilities. this was due to a number of factors relating to his particular circumstances, including his high physical care needs and fears of him not being accepted and included in his local mainstream primary school due to community beliefs and attitudes, his mother’s long working hours and limited support in the afternoons. the chaeli campaign therapist assisted with making the application to the lsen school, accompanying them to the interview assessment, getting ayabonga and his power wheelchair to school on his first day and taking his ‘first day at school’ photograph. she and the community worker continued to support ayabonga and his mom through a monthly parent support group held by the community worker, being a link between the school and home when necessary and fetching him from school twice a year, which gives his family occasional breaks from the costly and lengthy trip to fetch him at weekends and provides an opportunity for the therapist to follow up with the multidisciplinary team caring for him at school. although ayabonga and his mom have adjusted to him being a boarder and he is receiving specialised services, he has struggled being away from home and being taught in a second language, the combination of which has led to his teacher recommending that he repeat grade 1, to which his mother agreed. he has subsequently had a much easier start to his second year at the school and proudly talks about everything he is learning. anga’s family chose to send him to the local primary school, where he was enrolled into a grade 1 class despite being on the young side. a challenging, culturally determined event occurred at the beginning of his school year due to a combination of cultural beliefs and a recent popular movie. a rumour started that he could turn himself into a snake because of the way he walks, which led to some parents requesting that the principal remove him. such beliefs and attitudes are not uncommon in the local xhosa culture and may be related to the more widespread cultural metaphor among other indigenous cultures in southern africa, pertaining to an ‘internal or invisible snake’ which in turn is central in the ‘pollution beliefs’, that is, the causes of disease and modes of transmission or contagion (green 2004). it is beyond the scope of this paper to delve deeper into this as yet little documented field, but green’s hypothesis (2004) about the relationship between the snake beliefs and the beliefs of inner pollution and possible contagiousness, highlights the urgency of the need to understand and moreover meet the fears of these parents, that anga’s disability could be contagious. the chaeli campaign community worker, herself a member of the community and familiar with some of these beliefs, was able to attend the emergency meeting at the school to support his mother and to advocate for anga. the therapist subsequently met with the principal and teacher to again discuss his disability and arranged to spend time with his whole class to talk about being accepting of each other’s differences and to assist with ways to help anga and others with different challenges to be included at school through fun activities and peer-to-peer learning (e.g. experience being blindfolded, trying to walk and get up from the floor with one’s legs tied together). allowing anga to choose who would attend his ‘exercise’ sessions with him during the first few months of the year initially served as an incentive for peers to want to belong to his circle of friends. anga’s mother was supported through individual visits and the monthly parent support groups run by the community worker. she has become much more assertive about the rights of those with disabilities and has told her story in various forums, including offering to do it at the school. we have also requested that the school allow the chaeli campaign teacher to re-launch the programme she had introduced to them a few years earlier in an attempt to avoid such discrimination occurring in the future for anga or any other child. as he became accepted at school, we were able to decrease the frequency of our visits, and due to his resilience and love of learning, anga successfully completed grade 1. he then had a good start in grade 2 with only an initial introductory visit by the therapist, the community worker and his mother needed. this was to brief his teacher about his condition and make negotiations as to a suitable time for him to be seen for bimonthly therapy. reflections in south africa, we have made some progress towards achieving the objectives of inclusive education as set out by white paper 6 (department of education 2001). attitudes, behaviours, teaching methods and curricula needed to be addressed, focussing on ayabonga and anga’s individual strengths and needs in order to maximise participation and to minimise barriers to learning. this is in line with the inclusive education principles of meeting every child’s need within the education system and acknowledging the differences in the ways in which children learn.it has been wonderful to see these two young children settle into an environment where they are confidently learning with their peers. the process of getting these children to where they are today has been a dynamic one with many detours, and it has been vital for all parties to remain flexible and open while working towards the common goal of doing what is best for the individual child in the context of their family. it was essential to provide support for the children, their families, their current centre/school and the schools they would most likely attend in the future. the hope was to reinforce the educational process by determining, supporting and sustainably meeting each of the two children’s special needs. this included the supportive monitoring of group dynamics and social interaction throughout the process. this process highlighted the importance of on-going parental involvement; it was important to recognise the diverse ideas on what is best for the child, to respect each person’s part in the decision-making process and to arrive at a consensus. therapists became consultants in a more trans-disciplinary manner and the community worker was pivotal in facilitating communication and decision making, understanding the complexities faced by the families on an experiential level. the awareness of the child being first and foremost part of the family and then part of the community and other social networks, including peers and the families of peers (garbarino & ganzel 2000; pillay & di terlizzi 2009), facilitated a more permanent change for ayabonga’s family. so, for example, whilst we would not have chosen an english medium school for a xhosa speaking child, ayabonga’s family felt they needed the support of a boarding facility. furthermore, teachers received support and felt that they were not alone in the task of including the children. when problems arose that were new to them, they could call on the skills of the wider team (community worker, family and professionals) and this supported the sustainability of including these children. recommendations top ↑ in terms of clinical practice, recommendations for professionals in the field include the prioritisation of individualised approaches and parent involvement and parent choices by facilitating collaborations. these collaborations need to be on-going and supportive and need to include the family, the child, the community, the schools (both present and future) – and to strive towards transor interdisciplinary approaches by professionals. the identification and support of locally-based community workers by clinicians is a key recommendation to meet the locally specific and diverse needs and to facilitate community-based approaches.in terms of policy and curricula, it is recommended that information, skills training and advocacy issues about disabilities and their implications need to be included more formally in the curriculum for teacher training and in schools. this should aim to assist teachers and learners to include learners with disabilities in the academic as well as the social aspects of school life. in terms of research, there is a need for the development of a sound evidence base of best practice regarding the nature and format of disability-related teaching materials for teacher and peer training, and doable ways of including these into the present school curriculum. there is also a need for more participatory methodologies where parents and teachers drive research questions in line with their needs. finally, in addition to the grassroots identification and support of locally based community workers described above, the formal establishment of more positions, appropriate training and support for community workers is a cross-cutting recommendation and is a step towards scaling up such an intensive programme. it requires (a) research to quantify and further substantiate the need for community workers, (b) policies to validate and reinforce this need and (c) more formalised yet practical training of community workers, including support from rehabilitation professionals, to realise this strategic aspect of developing such an intensive programme to provincial or national scale and beyond. acknowledgements top ↑ the work described here was made possible by funding from the nelson mandela children fund, the western cape department of social development and the chaeli campaign. our heartfelt thanks and appreciation go to ayabonga and anga, their parents, teachers and all those in the community who took to heart the truth that it ‘takes a village to raise a child’ and agreed to the sharing of their story so that others may learn. in addition nicola cox, who played a key role in the beginning stages of the journey with the two children. finally, bukiwe mkhuba, mother, community worker and friend, without whom this programme would not be possible – let alone sustainable. competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this paper. authors’ contributions r.l. was the project leader; r.l. (with bukiwe mkhuba) carried out the programme; d.p. wrote the original draft manuscript; d.p., a.b. and c.p. made conceptual contributions and advised at numerous stages, and m.g. made conceptual contributions and coordinated the preparation of the manuscript for publication. references top ↑ department of education, 2001, white paper 6: building an inclusive education and training system, viewed 27 october 2011 from www.info.gov.za/whitepapers/2001/edu6.dunst, c.j., bruder, m.b., trivette, c.m. & hamby, d.w., 2006. ‘everyday activity settings, natural learning environments, and early intervention practices’. journal of policy and practices in intellectual disabilities 3(1):3-10. http://dx.doi.org/10.1111/j.1741-1130.2006.00047.x garbarino, j. & ganzel, b., 2000, ‘the human ecology of early risk’, in j.p. shonkoff & s.j. meisels, (eds.), handbook of early childhood intervention, 2nd edn., p. 76–93, cambridge university press, new york. http://dx.doi.org/10.1017/cbo9780511529320.006 green, e., 2004. purity, pollution and the invisible snake in southern africa. share the world’s resources, viewed 30 july 2012, from http://www.stwr.org/africa/purity-pollution-and-the-invisible-snake-in-southern-africa.html karangwa, e., miles, s. & lewis, i., 2010, ‘community-level responses to disability and education in rwanda’, international journal of disability, development and education 57(3):267-278. http://dx.doi.org/10.1080/1034912x.2010.501183 office of the deputy president of south africa, 1997, integrated national disability strategy (white paper) viewed 21 november 2009 from http://www.info.gov.za/whitepapers/1997/disability.htm/ ogot, o., mckenzie, j. & dube, s., 2008, ‘inclusive education and community based rehabilitation’, in s, hartley and j. okune (eds.) cbr: inclusive policy development and implementation, p. 160–189. university of east anglia, norwich. pillay, j. & di terlizzi, m., 2009, ‘a case study of a learner’s transition from mainstream schooling to a school for learners with special educational needs (lsen): lessons for mainstream education’, south african journal of education 29:105–126. silverman, k., hong, s. & trepanier-street, m. 2010, ‘collaboration of teacher education and child disability health care: transdisciplinary approach to inclusive practice for early childhood pre-service teachers’, early childhood education journal 37:461–468. http://dx.doi.org/10.1007/s10643-010-0373-5 schön, d. a., 1995, the reflective practitioner: how professionals think in action. ashgate, aldershot, hants. turnbull, a.p., summers, j.a., turnbull, r., brotherson, m.j., winton, p., roberts, r., snyder, p., mcwilliam, r., chandler, l., schrandt, s., stowe, m., bruder, m.b., divenere, n., epley, p., hornback, m., huff, b., miksch, p., mitchell, l., sharp, l. & stroup-rentier, v., 2007. ‘family supports and services in early intervention: a bold vision. journal of early intervention. 29(3):187-206. http://dx.doi.org/10.1177/105381510702900301 united nations, 2008, un convention on the rights of persons with disabilities, viewed 29 september 2009, from http://www.un.org/disabilities/convention/conventionfull.shtml/ footnotes top ↑ 1.in south africa, schools for learners with special educational needs are increasingly referred to as lsen schools. this new terminology encompasses respectful attempts to get away from the previously used, politically loaded term, ‘special schools’. while it may appear as a mere replacement of terminology, the new term does not carry as much stigma in the local context. 2.for more information please visit: www.chaelicampaign.co.za 3.in south africa, grade r (or ‘reception’) is a year of preparation for grade 1. while not compulsory by law yet, grade r classes are sometimes attached to formal nursery or pre-schools, and sometimes to primary schools. abstract introduction research methods and design results discussion conclusion acknowledgements references footnotes about the author(s) elsje scheffler division of family medicine and primary care, faculty of medicine and health sciences, stellenbosch university, cape town, south africa centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa robert mash division of family medicine and primary care, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation scheffler, e. & mash, r., 2023, ‘a stroke rehabilitation training program for community-based primary health care, south africa’, african journal of disability 12(0), a1135. https://doi.org/10.4102/ajod.v12i0.1135 original research a stroke rehabilitation training program for community-based primary health care, south africa elsje scheffler, robert mash received: 13 sept. 2022; accepted: 09 dec. 2022; published: 06 mar. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: with an increasing burden of stroke and a lack of access to rehabilitation services in rural south african settings, stroke survivors rely on untrained family caregivers for support and care. community health workers (chws) support these families but have no stroke-specific training. objectives: to describe the development of a contextually appropriate stroke training program for chws in the cape winelands district, south africa. method: twenty-six health professionals and chws from the local primary healthcare services participated in action research over a 15-month period from september 2014 to december 2015. the groups participated in two parallel cooperative inquiry (ci) groups. the inquiry followed the cyclical steps of planning, action, observation and reflection. in this article, the planning step and how the ci groups used the first three steps of the analyse, design, develop, implement, evaluate (addie) instructional design model are described. results: the chws’ scope of practice, learning needs, competencies and characteristics, as well as the needs of the caregivers and stroke survivors, were identified in the analysis step. the program design consisted of 16 sessions to be delivered over 20 h. program resources were developed with appropriate technology, language and instructional methodology. conclusion: the program aims to equip chws to support family caregivers and stroke survivors in their homes as part of their generalist scope of practice. the implementation and initial evaluation will be described in a future article. contribution: the study developed a unique training program for chws to support caregivers and stroke survivors in a resource-constrained, rural, middle-income country setting. keywords: primary healthcare; family caregiving; stroke rehabilitation; community care; education and training; participative methods. introduction south africa (sa) and other lowand middle-income countries (lmics) have an increasing burden of stroke as a result of socio-economic development, urbanisation, increasing risk factors for noncommunicable diseases and a transition in the epidemiological profile of the population associated with ageing, increase in cardiovascular diseases and adoption of the western lifestyle (donkor 2018; langhorne et al. 2018; taylor & ntusi 2019). while significant functional improvement is possible, around a third of stroke survivors require ongoing care (jaracz et al. 2015). in rural sa, the incidence and prevalence of stroke are higher than elsewhere recorded in sa or other african countries (maredza, bertram & tollman 2015; the saspi project team 2004), and the lack of access to medical and rehabilitation services increases disability and impairment, with resultant dependence on family caregivers. while family caregiver training is integral to stroke care and rehabilitation in all settings and levels of the health system (cameron et al. 2016; lindsay et al. 2014; pandian et al. 2016; winstein et al. 2016), the lack of services in rural sa contexts means a lack of caregiver training in these communities. the local and international literature describes a myriad of caregiver training interventions in different levels of care, different settings and with different caregiver needs and stroke survivor stages of recovery (aslani et al. 2016; bakas et al. 2014; brereton, carroll & barnston 2007; camak 2015; chaiyawat & kulkantrakorn 2012; chaiyawat, kulkantrakorn & sritipsukho 2009; deyhoul et al. 2020; forster et al. 2013; hafsteinsdóttir et al. 2011; krieger, feron & dorant 2017; lutz et al. 2016; mudzi, stewart & musenge 2012; nordin et al. 2014; pitthayapong et al. 2017; robinson et al. 2005; the attend collaborative group 2017; smith et al. 2004; torres-arreola et al. 2009; wang et al. 2015; yan et al. 2016; zhou et al. 2019). most evidence, including evidence from sa, comes from stroke survivors who received specialised stroke unit care and/or multidisciplinary rehabilitation services (aslani et al. 2016; bakas et al. 2014; brereton et al. 2007; camak 2015; dobe, gustafsson & walder 2022; forster et al. 2013; hafsteinsdóttir et al. 2011; krieger et al. 2017, 2021; lutz et al. 2016; robinson et al. 2005). there is limited evidence for caregiver training interventions in settings where these services are not available (deyhoul et al. 2020; dobe et al. 2022; krieger et al. 2021; mudzi et al. 2012; nordin et al. 2014; torres-arreola et al. 2009; zhou et al. 2019). despite the volume of evidence on caregiver training, few publications detail the training development process (forster et al. 2015; krieger et al. 2017; robinson et al. 2005). this inadequate description of the development process, particularly the context and instructional design methods, limits the transferability of interventions to low-resourced primary healthcare (phc) settings. there is also no evidence of caregiver training as a phc intervention. south african health policy promotes a phc approach with a continuum of preventive, curative, rehabilitative and palliative services. homeand community-based care (hcbc) are delivered by nurse-led teams of community health workers1 (chws) (naledi, barron & schneider 2011; national department of health 2018). rehabilitation services at the phc level are limited and infrequent (rhoda, mpofu & de weerdt 2009) and often inaccessible because of poverty and a lack of or inaccessible transport (cawood & visagie 2016; eide et al. 2015; maart et al. 2007; maart & jelsma 2014; visagie & swartz 2016). national initiatives to strengthen phc rehabilitation services include strengthening the role of chws, as well as introducing midlevel rehabilitation workers2 (national planning commission 2012). however, the latter has not gone to scale, and there is a need to redress the inequitable distribution of rehabilitation services. stroke caregiver training is congruent with the scope of practice of chws (hartzler et al. 2018). unfortunately, the national chw training curriculum contains limited rehabilitation content and only as elective modules (south african qualifications authority 2018a, 2018b, 2018c), thus limiting the knowledge of chws to support family caregivers. the western cape province in sa (figure 1) has a higher prevalence of stroke compared with national figures (shisana et al. 2013; statistics south africa 2018a). within its less-resourced rural districts, there are no stroke units or inpatient rehabilitation services. acute inpatient stays are an average of five days (scheffler & mash 2019), and stroke survivors are discharged home to untrained family caregivers, resulting in poor stroke survivor and caregiver outcomes and satisfaction (scheffler & mash 2019) and a high caregiver burden (scheffler & mash 2020). for these stroke survivors and their family caregivers, chws may be their only accessible source of health care and rehabilitation. however, these chws have no stroke or rehabilitation-specific training. because of the lack of rehabilitation service capacity in the district, a community-based services (cbs) manager from the rural cape winelands district (figure 1) requested the researcher’s assistance with the development of a rehabilitation training program for chws to train family caregivers of stroke survivors within hcbc services. the district had one multidisciplinary professional rehabilitation team of seven members and no midlevel rehabilitation workers. the researcher, a physiotherapist, had extensive stroke rehabilitation experience in low-resourced settings and with designing and developing training programs for rehabilitation health workers. this article reports on the design and development of a contextually appropriate stroke training program for chws within a rural south african phc context. figure 1: map of south africa illustrating the western cape province (light grey area), with the cape winelands district (darker grey area). the insert shows the breede valley subdistrict (black). research methods and design this article reports on the last stage of a multistage mixed-methods study (table 1). the first two convergent stages, a quantitative longitudinal survey (scheffler & mash 2019) and a qualitative exploratory descriptive study (scheffler & mash 2020), preceded the participatory action research study in stage three. table 1: overview of the multistage study, procedures and results integrated with the steps of the addie model. in this last stage of this multistage mixed-methods study, a cooperative inquiry (ci) process was used (heron 2014; higginbottom & liamputtong 2015; ramsden et al. 2018). cooperative inquiry had been used in stroke program and training development (aslani et al. 2016; dobe et al. 2022; krieger et al. 2021). the ci followed the cyclical steps of planning, action, observation and reflection (table 1). the cyclical steps of the ci were also aligned with the analyse, design, develop, implement, evaluate (addie) (analyse, design, develop, implement, evaluate) instructional design model (allen 2006; mayfield 2011) for the development of a training program (table 1): analyse, design, develop, implement and evaluate. this article focuses only on the planning step of the ci, which corresponds with the analysis, design and development steps of the addie model (figure 2). a separate article will report on the remaining steps of the inquiry where the program, per the addie model, was implemented and evaluated. figure 2: diagrammatic representation of the methods. the cycle illustrates the 4 steps of the cooperative inquiry (planning, action, observation and reflection) with the relevant steps of the analyse, design, develop, implement, evaluate model in brackets. this article focuses on the planning step of the cooperative inquiry. setting the study was conducted in the breede valley subdistrict (figure 1) of the cape winelands district in the western cape, south africa. in this rural setting, the majority of the population of 866 000 live in poverty and are dependent on public sector services (statistics south africa 2018b). the predominant language in the district is afrikaans, followed by english and isixhosa. stroke clinical practice pathways, evidence-based practice guidelines, as well as referral guidelines, were absent on the hcbc platform, and stroke care was poorly coordinated (scheffler & mash 2019). stroke survivors were discharged home from acute care to untrained family caregivers. function and care were limited by numerous environmental barriers such as unavailable or inaccessible services, physical barriers and lack of assistive products (scheffler & mash 2019, 2020a). overall literacy and numeracy of both stroke survivors and caregivers were low, with more than half having no or only primary school education (scheffler & mash 2019, 2020a). knowledge of stroke, rehabilitation, services and assistive products was poor (scheffler & mash 2019, 2020a). four independent organisations delivered rehabilitation-related services to stroke survivors and their families free of charge: seven healthcare professionals, all from different professions, referred to as the multidisciplinary professionals (mdps) (table 2) from the department of health rotated through the primary care facilities and delivered individual rehabilitation services. therapists, on request of hcbc services, had previously provided short, informal ad hoc in-service training sessions to chws. boland hospice, a nonprofit organisation, was funded by the department of health to deliver hcbc services in 10 municipal wards. four home-based care coordinators, who were professional and enrolled nurses, were responsible for conducting assessments, designing treatment plans and supervising the 79 chws (table 3) delivering home-based care services. the breede valley association for the physically disabled (apd), a nonprofit organisation, provided a range of services for persons with disabilities, including stroke survivors, such as access to education, employment and therapeutic counselling services. undergraduate physiotherapy and speech therapy students from stellenbosch university (su)’s rural clinical school were placed in two of the municipal wards and often accompanied the chws. they were supervised by two physiotherapists and a speech therapist from the university. table 2: numbers of multidisciplinary professionals and community health workers in the breede valley subdistrict. table 3: participant profile of the two cooperative inquiry groups. selection of cooperative inquiry group members the researcher consulted with the respective service managers from all the groups described in the setting section to identify key role players. because of practical and logistical considerations such as transport problems and work schedules, two cooperative inquiry groups (cigs) were formed (table 3). all but one invited person joined the process. the cbs-cig consisted of 18 service providers from the cape winelands district cbs management, boland hospice and apd. the mdp-cig consisted of eight mdps from the breede valley district and the university and included both clinical and educational expertise. the inquiry process both cigs engaged in a 15-month collaborative inquiry from september 2014 to december 2015. the inquiry focused on the interprofessional design and development of an appropriate training program for chws to train family caregivers of stroke survivors. cooperative inquiry group members contributed from their own experience, knowledge and available evidence related to caregiver training needs and interventions. the researcher, who was ultimately responsible for driving the research agenda and processes, engaged in a consultative and collaborative manner (higginbottom & liamputtong 2015) and shared findings and conclusions between the two cigs. a mutually designed timetable and activity chart guided the process. this, together with small group assignments, contributed to accountability. with the diversity in members of the cbs-cig, a dedicated effort was made by the researcher to create a neutral, democratic and collaborative meeting space. the inquiry process is described under the first three steps of the addie model. analysis step during this step, the cigs triangulated findings from the preceding studies (scheffler & mash 2019, 2020a), the available evidence (cameron et al. 2016; forster et al. 2012; lindsay et al. 2014) and their own professional experience to define the chws’ learning needs and characteristics as learners, taking into account the chws’ broader scope of practice. they also considered the needs of potential trainers, their characteristics as educators, as well as the training resources required. finally, they analysed the community and service context within which chws would need to perform after training. design step in the design step, the cigs utilised the information generated in the analysis step to formulate the following: learning outcomes educational approach rehabilitation philosophy training resources required approach to assessment of trainees structure of the training and time allocation. development step in this phase, the cigs developed learner and trainer materials and resources, as well as learner assessment tools. data collection and consensus building data collection and consensus building are described under the first three steps of the addie model. analysis step both cigs held three 3-h meetings and participated in group discussions and nominal group activities to reach consensus and rank ideas (mckillip 1987). all meetings were audio-recorded and transcribed. small group activities were recorded using field notes, flipchart summaries and photographs. the researcher compiled a detailed summary of each meeting, which was validated at the next meeting. design step using the same activities, both cigs met twice to reach a consensus on the design. following the development and validation of the key programmatic and sessional learning outcomes, the researcher developed an outline of the course structure with key topics, which were reviewed and revised by the cigs via e-mail. following consensus on the structure and time allocation, the final design was critically reviewed by five external reviewers who were experts in the field of stroke rehabilitation and training or education. development step the researcher was primarily responsible for the development of the materials according to the design and collaborated closely with relevant cig members. the psychosocial management session was developed by a cig subgroup of four social workers and one occupational therapist. the materials were developed according to the design, with attention to evidence-based rehabilitation practice and what was feasible in the local context. consensus building and validation within the cigs followed the same process as described in the design step above. all cig members and the external reviewers reviewed the final materials. ethical considerations the study was approved by the health research ethics committee 1 at stellenbosch university (ref. no. s13/09/158), and permission was obtained from the department of health to conduct the study. results this section reports on the results of the planning of the cigs in the first three steps of the addie model, namely analyse, design and develop. analysis the following key factors that influenced the design of the training course were identified. community health workers’ scope of practice the chws did not have any strokeor rehabilitation-specific training. their scope of practice already included health education, basic observations, training of family caregivers, assistance with daily living, monitoring patient and caregiver function and well-being, monitoring of treatment adherence, identification and referral of psychosocial problems and excluded patient assessment and care plan development (boland hospice 2014). as generalists on the phc platform, their prior training incorporated key principles of person-centeredness, continuity of care and intersectoral coordination. these principles were integrated into the new learning materials while taking note of existing competencies. care was taken not to duplicate the scope of practice of midlevel rehabilitation workers. community health workers’ learning needs the consensus on the chw learning needs was positioned within their scope of practice and included: knowledge about stroke: what it is, risk factors, causes, prevention, recovery knowledge about stroke rehabilitation: rehabilitation services available in the province, district and hcbc and the roles and responsibilities of chws, caregivers and patients knowledge to provide emotional support, reduce and monitor caregiver strain and identify psychosocial problems knowledge and skills to teach caregivers how to assist stroke survivors with basic activities of daily living, positioning, transfers and mobility knowledge on assistive products, including low-cost alternatives and how to access these knowledge on stroke survivor and caregiver safety, including prevention of falls and prevention of secondary complications ability to problem-solve around common environmental barriers knowledge and skills to teach basic rehabilitation exercises. distinct differences, however, existed between the two cigs on how these learning needs were phrased. whereas the cbs-cig formulated learning needs in terms of plain language and functional activities, the mdp-cig used professional jargon and emphasised impairments and theoretical principles. the final consensus was to formulate learning needs in terms of practical and functional activities that were informed by underlying theory, even if the theory was not always explicit. community health worker competencies six key chw competencies needed to train caregivers were identified. although these competencies all existed in a generic way, they needed to be specifically related to stroke: transfer knowledge to caregivers and stroke survivors by explaining, informing and educating transfer skills to caregivers and stroke survivors through explanation, demonstration and practice with feedback evaluation of caregivers’ skills and knowledge provide emotional support to caregivers and stroke survivors and monitor for caregiver strain know when and how to get help from medical, rehabilitation and social services manage themselves in terms of their own roles and boundaries, as well as caregivers’ and stroke survivors’ expectations. characteristics of community health workers as learners although the chws had all completed high school, the majority only had basic literacy and numeracy competencies. the first language of the majority was afrikaans, followed by isixhosa and english, with english being the common language. in addition to in-service training, some had completed basic education modules in home-based care. they preferred learning skills through observation, role-play and practice with feedback. although they had limited knowledge, the chws were highly receptive to training on home-based stroke rehabilitation and motivated to learn more. characteristics of the trainers training was to be delivered by the mdps, who had experience in stroke rehabilitation and working in low-resourced settings. although having previously provided in-service training, they had no background in the development of formal structured training programs targeting a community-based health problem. trainer resources required no appropriate existing training materials could be identified. both chws and caregivers complained about having received conflicting information in the past, highlighting the need for a trainer’s manual with detailed session plans to ensure a structured, uniform training approach and content. this would be an important resource for use by mdps and their students. service contextual factors the lack of clinical practice pathways at the hcbc level resulted in a poor understanding of the chws’ rehabilitation role, as well as unmet expectations and unrealistic demands of stroke survivors and caregivers. these factors, together with a lack of insight and support from formal services, resulted in many chws assuming additional tasks and responsibilities outside their scope of practice. this raised liability issues and concerns about their own well-being. community health workers also functioned in isolation from the mdps and other phc services, resulting in the fragmentation of services. the program included defining and clarifying the chws’ roles and establishing referral systems to mdps and phc services. wider service problems were identified, mostly related to the lack of clinical practice pathways, such as delayed referral to hcbc, fragmentation of services and inadequate provision of assistive products. these problems were escalated to service managers, as this fell outside the scope of the educational initiative. design the design of the training program was based on the information generated during the analysis phase. program structure and time allocation the final structure based on the key programmatic outcomes is summarised in table 4. while there was good consensus on the structure, suggested time allocations varied widely between cig members. individuals who regularly provided skills training allowed more time for observation and practice, whereas others allowed more time for theory. the final time allocation for the program was 21 h. table 4: program outline and time allocation. learning outcomes through multiple reviews, 15 key programmatic learning outcomes as well as detailed learning outcomes for each of the sessions were identified (table 5). table 5: key programmatic outcomes (aims) and learning outcomes of the 16 sessions. table 5 (continues...): key programmatic outcomes (aims) and learning outcomes of the 16 sessions. table 5 (continues...): key programmatic outcomes (aims) and learning outcomes of the 16 sessions. approach to teaching to be appropriate for chws, the content needed to be aligned with level three of the sa national qualifications framework (south african qualifiations authority 2012). principles of adult learning were adopted (hanger & wilkinson 2001; kaufman 2003; knowles 1970). this allowed for a facilitative style of teaching and active engagement through demonstrations, practice and role-plays in groups of three, with chws rotating through three roles: (1) being the stroke survivor, (2) being the family caregiver and (3) being the chw. assuming these different roles gave them a vicarious experience of being the recipient of their intervention as well as the chw. the teaching approach incorporated a spiral curriculum (harden & stamper 1999) and a triad of theory–modelling–practice with feedback for learning practical skills (hanger & wilkinson 2001; kaufman 2003; maguire & pitceathly 2002). considering the practical nature of the training, a ratio of one trainer to six learners was needed for small group work and learning skills. depending on the size of the training venue, resources and trainers, up to 24 learners could be accommodated in a session. rehabilitation philosophy underpinning the training program the bobath approach (michielsen et al. 2019; vaughan-graham et al. 2009, 2019a, 2019b) was deemed the most appropriate as it follows a functional, problem-solving approach. recovery is founded on neuromuscular plasticity. by incorporating the principles of task-based training, motor learning and a 24 h approach, normal movement patterns are facilitated and compensatory patterns are limited. this is the only approach to have formally included other categories of healthcare personnel in its training (friedhoff & schieberle 2007). training resources required the following training resources were required: trainer’s manual with timetable and detailed session plans inclusive of learning outcomes, list of resources needed, guidelines on further adaptation to the local context, preparation required and detailed session plan including timing, teaching methods and approach to formative assessment with model answers and checklists. powerpoint presentations (microsoft corporation, redmond, washington, united states) to support the theory and process of each session. equipment for demonstration and practice purposes. a standard list of equipment would enable training in different settings, such as a nongovernment organisation, local health care facility or community centre. although access to tables, chairs, therapy mats and examples of wheelchairs and assistive products would be readily available in most settings, it was unlikely that there would be enough beds or treatment plinths. therapy mats could be used for practising bed mobility but not for bed or bath transfer training. the training manual had to guide trainers to use chairs and tables to allow simulated transfer practice. examples of self-made assistive products were also needed. learner’s manual for chws based on the content of the trainer’s manual, incorporating the formative assessments and model answers or checklists, as well as resources such as examples of referral forms. detailed sequences of line drawings were needed to supplement the text of the learner’s manual. these same drawings would be used in the other resources as well. booklet for caregivers and stroke survivors. a suitable caregiver and patient booklet was previously co-authored by the researcher and revised after a suitability study (botha 2008; scheffler & visagie 2011) for use in a similar community. the booklet was updated and revised accordingly and translated into afrikaans and isixhosa (stellenbosch university 2022). assessment formative assessments were integrated in each session through case studies and role play activities. each of the case studies had model answers listed in both trainer’s and learner’s manuals and a checklist for performing activities. these assessments would assist both the trainers and the chws to provide or obtain constructive feedback on learning. develop line drawings were commissioned from purpose-specific photographs taken by the researcher. the text for the trainer’s manual was developed first, and then the powerpoints and learner’s manual were developed. the stroke survivor and caregiver information booklet were updated and translated. training resources were developed in english using plain language. this challenged the mdps. the learner’s manual and information booklet were picture based with limited text. the manuals and information booklet were developed as both hardcopy and online resources, together with the powerpoint presentations. discussion this study appears to be the first of its kind to design an appropriate stroke training program for chws to empower caregivers and stroke survivors in the home. several stroke interventions, including caregiver training, have been developed through co-creation (aslani et al. 2016; dobe et al. 2022; krieger et al. 2021). however, these programs focus on stroke survivors who have received formal rehabilitation services. these programs are primarily delivered by professionals and also include applications and other technological solutions. in this study, the stroke survivors had not received any formal rehabilitation services. the training program was designed under the phc philosophy to address a significant community health problem and was developed through coordinated engagement between local professional and nonprofessional healthcare providers using appropriate technology and resources (mash et al. 2019; naidoo, van wyk & joubert 2016; world health organization 2008). technological barriers, such as restrictions on the government computer networks, prevented the use of cloud-based collaborative environments during the design and development phase and impacted the participative process. primary healthcare in sa is evolving, and mdps in this study had neither training nor experience in developing community-based interventions and had limited time to participate in such initiatives because of their focus on individual care. participating in this novel process should lay a foundation for future team-based interprofessional community-oriented phc interventions. effective leadership and management are needed to reshape existing care models into comprehensive phc interventions (marcus, hugo & jinabhai 2017; schneider et al. 2015). while stroke caregiver training is routinely delivered by rehabilitation professionals (bakas et al. 2015; camak 2015; chaiyawat & kulkantrakorn 2012; forster et al. 2015; hankey 2013; mudzi et al. 2012; sabariego et al. 2012; the attend collaborative group 2017; wang et al. 2015), task-shifting to other healthcare cadres is advocated where numbers of rehabilitation professionals are limited (bryer 2009; bryer et al. 2011; hassan et al. 2012; miranda et al. 2017; the attend collaborative group 2017; wasserman, de villiers & bryer 2009). task-shifting to nurses is common (deyhoul et al. 2020; torres-arreola et al. 2009; yan et al. 2016; zhou et al. 2019). however, problems such as increased workload, time implications and inadequate underlying skills and knowledge may undermine such task-shifting (torres-arreola et al. 2009; zhou et al. 2019). no evidence of task-shifting to midor grassroots-level workers was found for stroke rehabilitation in lmics. unlike many caregiver training interventions in lmics, which focus on home-based rehabilitation exercises (chaiyawat et al. 2009; the attend collaborative group 2017; torres-arreola et al. 2009; wang et al. 2015; yan et al. 2016; zhou et al. 2019), this training program included minimal teaching of home exercises to ensure that the content was aligned with the chws’ scope of practice and avoided overlap with the scope of future midlevel rehabilitation workers. by following the principles of the bobath neurorehabilitation approach, recovery was promoted through a 24 h therapeutically structured caregiving approach and neuroplasticity by repeated task practice and motor learning. routinely repeated caregiving activities become therapeutic and synchronous with the therapeutic approach from therapists (michielsen et al. 2019; vaughan-graham et al. 2009, 2019a, 2019b). the content of this training program was based on an in-depth analysis of the local context and the needs of the caregivers and stroke survivors. in contrast, most caregiver training programs, including those developed in lmics (chaiyawat et al. 2009; chaiyawat & kulkantrakorn 2012; deyhoul et al. 2020; mudzi et al. 2012; pitthayapong et al. 2017; the attend collaborative group 2017; torres-arreola et al. 2009; yan et al. 2016; zhou et al. 2019), have followed a top-down approach with design by professionals from specialist rehabilitation services. only a few training programs (dobe et al. 2022; krieger et al. 2017; robinson et al. 2005) have been informed by the needs of the target population. although the topics covered in this training program were similar to others in the immediate post-acute period in both high-income countries (hics) (bakas et al. 2014; forster et al. 2015; kalra et al. 2004; white, cantu & trevino 2015) and lmics (chaiyawat et al. 2009; chaiyawat & kulkantrakorn 2012; deyhoul et al. 2020; mudzi et al. 2012; pitthayapong et al. 2017), it differed from existing programs by focusing on culturally and contextually appropriate information and training materials, including low-cost, self-made assistive products. each lesson plan also provided guidance on how to further adapt the training to the local setting. contextual appropriateness has only recently been emphasised in stroke training (krieger et al. 2017; the attend collaborative group 2017; yan et al. 2016; zhou et al. 2019). the low educational levels of both the chws and the final target population impacted the selection of teaching methods and the development of training resources. the interactive nature of the adult education teaching model (hanger & wilkinson 2001; kaufman 2003; knowles 1970) accommodated the low literacy levels (doak, doak & root 1996), different learning styles (hanger & wilkinson 2001; knowles 1970) and learning of practical skills (hanger & wilkinson 2001; kaufman 2003; maguire & pitceathly 2002; mudzi et al. 2012; nadar & mcdowd 2008; pitthayapong et al. 2017), as well as feedback through assessment (deyhoul et al. 2020; hanger & wilkinson 2001; kaufman 2003; maguire & pitceathly 2002; mudzi et al. 2012; pitthayapong et al. 2017). the plain language text of the resources and trainer’s manual and the picture-based format of the learner’s manual and information booklet facilitated access and understanding (doak et al. 1996). poverty, technological barriers (opoku, stephani & quentin 2017) and prohibitive data costs (independent communications authority of south africa 2017) limited opportunities for chws and caregivers to access online information and/or to use electronic teaching and information platforms, necessitating the development of paper-based resources. all resources were also made available online, with online size minimised by using black and white line drawings and low-resolution videos and slide presentations. with limited access to and availability of psychosocial services, this training program included a substantial focus on psychosocial support within the chw’s scope of practice, including identification and referral of at-risk families. although common in training programs in hics, psychosocial support is less frequent in training programs in lmics (pitthayapong et al. 2017; yan et al. 2016; zhou et al. 2019). although the structure of the training program for chws followed a specific sequence and duration, the training of caregivers would be tailored to the stroke survivor’s specific level of functioning and care needs, similar to most training programs (chaiyawat et al. 2009; chaiyawat & kulkantrakorn 2012; forster et al. 2015; mclennon et al. 2014; mudzi et al. 2012; pitthayapong et al. 2017; the attend collaborative group 2017; wang et al. 2015; yan et al. 2016; zhou et al. 2019). progression of caregiver training would be determined by the care coordinators and the chws. as a participatory action research project, the involvement of the service providers was limited because of low numbers and high service demands. none had experience in designing a training program of this scale and nature. fully collegial roles (higginbottom & liamputtong 2015) with equal responsibility for conducting the research project and compiling and implementing the training program were not possible. cooperative inquiry group members therefore clarified the extent of their involvement at the start. whereas cig members are usually both co-researchers and co-subjects during the inquiry (heron 2014), limited availability shifted the focus to the pragmatic tasks of developing the training program, with reflectivity limited to more practical and operational awareness. transferability and use of the training program will be limited to similar services, contexts and group characteristics and will need to be adapted for the local context with regard to resources, technology, health care service structure and existing knowledge. the design of the resources allows for this. this article only reports on the planning phase of the inquiry. a future article will report on the implementation of the program and subsequent actions, observations and reflections of the cigs. conclusion this study demonstrated how local healthcare services at the phc level can design an appropriate, contextually relevant community-oriented intervention through a participatory approach. the ci planning step described in this article used the addie model to analyse, design and develop an appropriate home-based stroke rehabilitation program to be delivered by chws in a low-resourced setting. this home-based stroke rehabilitation program and its accompanying training program for chws should be implemented and further evaluated in practice. acknowledgements we acknowledge that this article is partially based on the author’s phd 2020 thesis entitled the design, development, and evaluation of an appropriate home based stroke rehabilitation program for a rural primary health care setting in the western cape, south africa at stellenbosch university, faculty of medicine and health sciences with the supervisor r. mash. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions e.s. conceptualised the study, collected and analysed data and reported on the findings. r.m. supervised e.s. as part of her doctoral studies throughout the research process, and all authors approved the final manuscript. funding information this work was supported by the stellenbosch university rural medical education partnership initiative through the president’s emergency plan for aids relief (pepfar) through the health resources and services administration (hrsa) under the terms of t84ha21652, the discovery foundation award for health care in rural and underserved areas, the stellenbosch university harry crossley fund and fund for innovation and research in rural health, the international bobath instructors training association (ibita) and the south african society of physiotherapy. data availability the data that support the findings of this study are available from the corresponding author, e.s., upon reasonable request. disclaimer the views expressed in the submitted article are his or her own and not 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occupational therapy technicians and rehabilitation care workers. their training programs are of longer duration and at higher educational level than those of chws. abstract introduction literature review methods findings discussion conclusions limitations acknowledgements references about the author(s) callista k. kahonde department of global health, centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa rebecca johns consultant for western cape forum for intellectual disability, cape town, south africa citation kahonde, c.k. & johns, r., 2022, ‘knowledge, perceptions and experiences of risk to sexual violence among adults with intellectual disabilities in cape town, south africa’, african journal of disability 11(0), a837. https://doi.org/10.4102/ajod.v11i0.837 research project registration: project number: 10502 original research knowledge, perceptions and experiences of risk to sexual violence among adults with intellectual disabilities in cape town, south africa callista k. kahonde, rebecca johns received: 15 dec. 2020; accepted: 19 dec. 2021; published: 18 mar. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with intellectual disabilities are at high risk to sexual violence, yet minimal research has been conducted in south africa to understand this phenomenon, especially seeking perspectives of people with intellectual disabilities themselves. objectives: this study aimed to explore and describe the knowledge and awareness of risk to sexual violence among adults with intellectual disabilities and to understand their perceptions and experiences of risk. method: an exploratory qualitative approach was appropriate as there is lack of literature on this subject. focus group discussions were used as the method of data collection. the method of conducting focus group discussions and data collection instruments were adapted to suit the communication and cognitive abilities of the adults. twenty-seven adults participated in the study and they were divided into six groups of four to five participants in each group. results: the adults’ responses revealed that they had some knowledge of risks to sexual violence, but they also had knowledge gaps and some erroneous knowledge and perceptions that could put them at high risk. the experiences they shared showed that the risk of sexual violence is high among women with intellectual disabilities. conclusion: further research is needed to inform a community approach which includes people with intellectual disabilities, their families, services providers and community members as an intervention to empower and protect people with intellectual disabilities from sexual violence. to achieve this, we recommend an ecological framework as a guiding tool in both the research processes and the implementation of the outcomes. keywords: intellectual disabilities; sexual violence; abuse; risk; knowledge; perceptions; experiences. introduction sexual violence is rife in south africa. the world population review reported that south africa has the highest incidents of rape in the world, with an alarming rate of 132.4 incidents per 100 000 people (world population review 2020). there is a lack of disaggregated data presenting the statistics of sexual offences against people with intellectual disabilities in this country. however, the evidence of their high vulnerability worldwide and the scanty local literature available suggests that this group is particularly at high risk (dickman & roux 2005; meer & combrinck 2015). research specifically seeking to understand sexual violence against people with intellectual disabilities in south africa is limited. the few areas that have been addressed on this subject mostly focus on sexual violence among learners with intellectual disabilities from the school setting (mdikana, phasha & ntshangase 2018; nyokangi & phasha 2016; phasha 2009, 2013; phasha & myaka 2014; phasha & nyokangi 2012). sexual violence has also been studied in research exploring gender-based violence among women with intellectual disabilities (meer & combrinck 2015). of the school-based studies, only phasha and nyokangi (2012) and nyokangi and phasha (2016) sought the experiences of learners with intellectual disabilities and the rest interviewed professionals, families or community members as their participants. the scanty literature highlighting the voice of people with intellectual disabilities raise the need to hear their own perceptions and experiences of sexual violence so as to identify their gaps in knowledge and awareness of risks. against this backdrop, the current study explored the knowledge, experiences and perceptions of risk to sexual violence among adults with mild to moderate intellectual disabilities receiving services at facilities in cape town, south africa. we see this as a critical step towards a nothing about us without us approach in research seeking to understand sexual violence among people with intellectual disabilities. previous research that mostly relied on responses from proxies was critiqued by hollomotz (2018), because the proxy is likely to express their own experiences and subjective perceptions and not necessarily represent the person concerned. the practice of relying on proxies reflects society’s belief that people with intellectual disabilities are not able to speak for themselves. this view sees adults with intellectual disabilities as perpetual children and it impacts on their confidence and may intensify their vulnerability to all forms of abuse (nyokangi & phasha 2016). on the contrary, giving them space to speak for themselves while affirming their positive contributions and assisting them to recognise erroneous perceptions as enabled by the methodology of this study is both empowering and emancipating for people with intellectual disabilities. this study is the first of its kind in the study setting. the purpose was to explore and describe the knowledge, perceptions and experiences of risk to sexual violence among adults with intellectual disabilities with the aim to identify gaps and opportunities to inform services for their empowerment and prevention of sexual violence for this group. as a starting point, an exploratory approach was appropriate as there is lack of literature on this subject. it is expected that the study findings will give impetus to more in-depth, theory informed studies in the future. a relevant theoretical lens suggested by the study findings, which will be expounded on later is the ecological systems theory (bronfenbrenner 1979). literature review although the trends may vary by context, sexual violence against people with intellectual disabilities is an issue of concern in both high income and low to middle income countries among children and adults with this type of disability (curtiss & kammes 2020; lin et al. 2009; smeaton & franklin 2018). in taiwan, lin et al. (2009) reported that sexual assault among people with intellectual disabilities comprised more than 50% of the statistics of sexual assault across all types of disabilities. in the uk, smeaton and franklin (2018) found that children with intellectual disabilities are more vulnerable to child sexual abuse when compared to their counterparts without disabilities. in a more recent study, majeed-ariss, rodriguez and white (2020) reported an over-representation of people with intellectual disabilities among people seeking forensic medical examination at saint marys sexual assault referral centre. in the usa, shapiro (2018) presented a special series of articles on national public radio that explored sexual violence against people with intellectual disabilities reporting unpublished data from the us justice department. the data showed that people with intellectual disabilities were assaulted at rates more than seven times higher than the population of people without disabilities. research on the prevalence of sexual violence against people with intellectual disabilities in african countries other than south africa is lacking, but there is also evidence of higher occurrences among this group. for example, in nigeria, aderemi and pillay (2013) found that the rate of sexual abuse was four times higher for school-going adolescent girls with mild to moderate intellectual disabilities when compared to the adolescents without disabilities who were the control group in their study. the reasons for increased vulnerability of people with intellectual disabilities documented in the literature are related to their limitations in intellectual and adaptive functioning, and negative attitudes and perceptions towards their sexuality (phasha & myaka 2014; smeaton & franklin 2018). it is important to understand both the contextual risks and the impairment-related risks so that as a society we can work towards taking action against this scourge without simply blaming it on the attributes of the individuals with intellectual disabilities. in line with this, curtiss and kammes (2020) argued that individual factors on their own do not cause sexual violence; hence, the interplay between the impairment and the environment should be considered. phasha and myaka (2014), in their study on factors contributing to the vulnerability of teenagers with intellectual disabilities to sexual abuse found an interaction of individual, family and community factors as central in putting the teenagers at risk. they argued for preventative interventions that take consideration of what happens at all the three levels. such interventions require the understanding of perceptions and experiences of people with intellectual disabilities and not just relying on research documenting the perceptions of carers, professionals, and others. people with intellectual disabilities are unlikely to receive adequate sexuality education because of misconceptions and myths, for example, the belief that they are asexual or hypersexual (shakespeare 2013) and the lack of understanding of how much they can comprehend (aderemi & pillay 2013). there is also a common fear, especially among family caregivers that sexuality education may ‘wake sleeping dogs’ by awakening an interest in sexual activity (kahonde 2016). myths, stereotypes and negative attitudes towards intellectual disability have been found to heighten their risk to sexual abuse within the south african context (meer & combrinck 2015; phasha & myaka 2014). phasha and myaka (2014) reported that professionals and community members in their study in gauteng province believed that learners with intellectual disabilities have a high sex drive or they are naturally sexually attractive because of ‘spirits’ and ‘powers’ related to intellectual disabilities. the myths and misconceptions and the factors that put people with intellectual disabilities at higher risk need to be addressed through evidence-informed interventions. there is also a gender bias within research focusing on sexual violence against people with intellectual disabilities. most studies focus on women with intellectual disabilities (barger et al. 2009; bernet & ogletree 2013; bornman & rathbone 2016; haffejee & theron 2017; meer & combrink 2015). very little is known about the sexual violence against men with intellectual disabilities. hence, this study attempted to understand this phenomenon from the perspectives of male and female adults with intellectual disabilities. methods study setting and participants the study was conducted in cape town, south africa at facilities offering services to adults with intellectual disabilities. it was part of a bigger study that explored the risk of sexual violence against people with intellectual disabilities with the ultimate aim of developing innovative ways to support empowerment and to decrease risk. twenty-seven adults with mild to moderate intellectual disabilities between the age of 20 and 47 years participated in the study. there were 18 women and 9 men. the participants had to be able to communicate verbally to be eligible to participate. the level of intellectual disability was not assessed for the purposes of the study but was determined as classified by the service providers. the demographic information of the participants is shown in table 1. table 1: details of the groups and participants. recruitment the participants were recruited through facilities offering services for adults with intellectual disabilities. the participants were purposively selected with the help of the coordinators and managers of the facilities to include participants from different backgrounds in terms of language, ethnicity and socio-economic status. the principal investigator wrote letters seeking permission to the family caregivers which the coordinators of the facilities gave the adults with intellectual disabilities to deliver to their families with a reply slip. before the study commenced, the workshop coordinators or another service provider working with the adults played an intermediate and supportive role between the researchers and the participants by explaining what the letters were saying and also describing what was expected of the adults. during this process, the service providers emphasised that the participation was voluntary and the adults had the right to choose to participate in the study or not even if their parents gave consent for them to participate. only the adults whose family caregivers gave consent for them to participate were included in the study as the rules of the facilities did not allow them to participate without consent from the family. this was a limitation to the recruitment process which the researchers had no control of. this gatekeeping around the participation of people with intellectual disabilities in research is one of the possible reasons for the lack of research directly documenting the voices of people with intellectual disabilities. carlson (2013:305) calls this the ‘double danger of inclusion or exclusion’; whereby on the one hand people with intellectual disabilities are viewed as a vulnerable group in need of special consideration and protection in relation to research while on the other hand these special considerations may result in their exclusion from research and their direct experience and perspective remaining invisible. data collection data were collected using focus group interviews. twenty-four focus group discussions were conducted with six groups of adults with intellectual disabilities. a series of four sessions were held with each group, and the sessions were conducted weekly for each group with each session theme building on the previous one. each group session lasted for an hour. not all participants were able to attend the four sessions. some of them missed one or two sessions because of illness, and work or family commitments but there were at least three participants at each group session. there were four groups of female participants and two groups of male participants. the groups were separated according to gender because of the sensitive and potentially triggering nature of the subject which might have made it more difficult for participants to feel safe in a mixed group. the group allocation was performed by the staff at the facilities and none of the participants presented or disclosed as identified as lesbian, gay, bisexual, transgender, queer, intersex, asexual, pansexual (lgbtqiap). however, the focus group discussions included aspects of different types of relationships and also allowed the participants to choose the orientation of characters in relationships enabling activities and data collection tools to transcend depictions of solely heterosexual relationships. four groups mixed afrikaans and english, one group mixed isixhosa and english and one was conducted in english only. the staff members from the facilities (known to and supportive of the adults) assisted with translation in the groups with non-english speaking participants. all the sessions were conducted in a comfortable, private room at the facility where the adults were residing or receiving day services. the first session started with the informed consent process and setting rules for the group discussions, followed by ice-breaking activities which helped the participants to relax. the activities aimed to build rapport between the participants and the researchers and for researchers to gain some understanding of the participants’ communication abilities. sessions two to four focused on themes such as relationships and feelings, consent and seeking help and awareness of abuse. concepts were introduced progressively, starting with less sensitive subjects like different types of emotions, relationships, boundaries, knowing your body, private and public, and then progressed to more sensitive subjects like intimacy, giving or refusing consent to sexual behaviour and considering strategies in response to the experience of sexual abuse. the data collection process used tools to make the concepts simpler and concrete to the participants (hollomotz 2018). the concrete tools included emojis, pictures of relationships, pictures of consenting and non-consenting touch and cut-out characters used to co-create social stories with the group. these picture resources form part of a sexuality education programme developed by the western cape forum for intellectual disability (johns 2020). pictures and social stories are a recognised method to facilitate communication and learning with people with intellectual disabilities, particularly those with limited literacy (bornman & rathbone 2016). these tools allowed the group to share their views while depersonalising sensitive themes onto the pictures or characters. the participants were encouraged to interpret the relationship shown in the pictures through reading body language and/or emotions and whether the situation looks safe or unsafe, if the characters are both consenting and the steps they should take if they are not consenting. the group also co-created social stories using the cut-out characters that allowed them to safely share their perceptions of relationships, boundaries, and strategies to seek help and support where needed. the researchers were attentive to ‘teaching moments’ during the focus group discussions whereby they would affirm the participants’ responses who showed an awareness of their rights, healthy relationships, risky situations and strategies for self-protection. the participants were provided with more information, guidance and/or correction when they suggested an inappropriate or erroneous response. having four sessions afforded opportunities to strengthen the group’s awareness of their right to report, to seek help and not to be abused, as a way of providing some benefit for their participation and contribution to the study. both authors were present during all the focus group discussions. author 1 opened the sessions with an icebreaker followed by the informed consent process and the rules of conduct and observed and took notes throughout the sessions. author 2 did most of the interview activities with the participants. the interviews were recorded with a voice recorder. the researchers were both female. all the male groups and the female non-english speaking groups had a supporter of the same gender as the participant, who was a staff member at the facility. the facilitators attempted to put the male participants at ease by acknowledging that the participants might find it difficult to discuss sexuality issues with female researchers and they were reassured that the focus groups were a safe space and they were given the opportunity to decide rules to guide the group sessions. the ice-breaking activities at the beginning of each session helped the participants to relax. data analysis the two researchers met after every session to reflect and share their thoughts about the session. details of the reflection were written as part of the notes from that specific session. the focus group interview recordings were transcribed verbatim and all the parts of the interviews which were in isixhosa or afrikaans were translated to english. the verbatim transcripts were then analysed by author 1 following the approach to thematic analysis by braun and clarke (2006, 2019). the initial phase, familiarisation with data, was started during the shared reflections between the two authors and was continued through reading and re-reading of the transcripts. this was followed by systematic coding of the data through naming of phrases, words and chunks of data from which meaning could be derived. codes with similar traits were then grouped into initial themes and sub-themes. this was followed by further analysis of the initial themes and sub-themes and re-arranging of some of the codes within or across themes as appropriate to ensure coherence and fit. at this stage, the themes were shared with author 2 for verification and the two authors collaborated in the final phase of defining and naming of themes. ethical considerations the study was approved by the stellenbosch university, faculty of health sciences human research ethics committee (reference number: n19/06/072). the informed consent process used a pictorial form with headings and very little text as most of the participants were unable to read but they could link pictures to the verbally explained concepts which supported understanding and retention of the information. the participants were given space to ask questions during and after going through the informed consent form and took the consent form home to show their family. they all signed their own forms by either writing their name, initials or putting an ‘x’ if they were unable to write. a code of conduct for focus group discussions was discussed and the participants were asked to add what was important to them in terms of how the group discussions were going to be conducted. all the subsequent sessions started with a recap of the informed consent and the code of conduct. given the sensitive nature of the subject of inquiry, it was anticipated that some participants may be emotionally affected by the conversations, so the researchers made prior arrangements with the facilities for the social workers to be on stand-by to speak to anyone needing counselling. the informed consent process explained that if any participant disclosed a previous or current experience of being harmed or abused in the session, the researchers would need to tell someone like a social worker in their organisation so that they could receive the support they need, but that no communication would happen without their knowledge and involvement. the participants’ identities are protected by the use of pseudonyms in this article and all other documents reporting the study. findings the discussions with the 27 participants revealed that they had some knowledge of their rights and the risks to sexual violence, but they also had knowledge gaps and some erroneous knowledge and perceptions that could further increase their risk of abuse. generally, women were more spontaneous and participative than the men who needed more probing and encouragement to join the discussions. the four themes that were generated from the data were as follows: ‘experiences and perceptions of love relationships; knowledge and awareness of sexual abuse; past experience of abuse/attempted abuse and knowing what to do in case of abuse’. it is important to note that although the questions were presented using the concrete tools to depersonalise sensitive themes, there were some participants who prompted by a story scenario or picture, chose to share their personal experiences as shown by some of the excerpts below. experiences and perceptions of love relationships discussions of what a healthy love relationship entails and seeing pictures of couples led to eight out of the 27 participants sharing that they were in love relationships. only one of the male participants spoke about his girlfriend and the rest of those who spoke about their relationships were women. there was also one male participant who shared that he had a 2-year-old daughter but he was not together with the mother of the child. all the relationships were heterosexual and they involved a partner who also had intellectual disability. most relationships seemed to be more platonic than sexual as they indicated that they were not keen on engaging in sexual touch or ‘going to bed together’, but preferred sitting together and cuddling. some of their responses indicated that sexual intimacy was discouraged by parents and service providers. they had to say the following about their relationships: ‘it’s not nice…i don’t like when someone touches private stuff…in the bed…not my favourite…i love cuddle and stuff…that’s my favourite…and one kiss…that’s all….i don’t like french kissing….’ (lidia, female, 32, afrikaans, fg1) in agreement to what lidia had said, prisca interjected saying: ‘yes it is different. it’s almost like x and i…on occasion we sometimes hold hands…or sometimes he will whisper something into my ear. he will always buy me chocolates…i like that….’ (prisca, female, 36, afrikaans, fg1) one was interested in having a boyfriend and probably a sexual relationship, but her mother was discouraging her: ‘i think i like to kiss. i don’t have a boyfriend…my mother says that i mustn’t get a boyfriend… the boyfriend want to kiss…and go ahead. yesterday my mother says that the guys naked … then they tighten their hands around the girls hair … i don’t want to do that…my mother said that they are doing other things in their relationship….’ (deon, female, 31, afrikaans, fg3) one who had her boyfriend attending the same workshop with her shared that the manager told them that the men are not allowed to touch the women. the couples at the workshop were receiving regular counselling and guidance from the manager and being given rules on how to behave at the workshop: ‘we went to a meeting at the manager … and she said that the men are not allowed to touch us. we always have a couples meeting … and that’s why i keep it in my brain.’ (thato, female, 41, afrikaans, fg3) abel, the man in focus group 3 who shared about his girlfriend said, ‘y is my special friend. she helps me with things like doing stuff on my phone and reading my messages’. although he had shared about this ‘special friend’, he later on became very withdrawn and looked upset during the focus group sessions. the researchers asked him if he wanted to continue and he said he wanted to continue, but he did not like talking about sex because his parents never talk about such things with him. while others expressed lack of interest or disapproval of sexual touch, some responded to a question of what should the woman in the picture do when a man is trying to touch her private parts by saying: ‘i would tell her if you are both ready then fine but if she is not ready, he must respect her.’ (ella, female, 45, english, fg5) ‘only if a woman gives permission to a man, then they can go to bed together like that.’ (thato, female, 41, afrikaans, fg3) the participants in both the male and female groups could identify same sex relationships, for example, when shown pictures or cut-out characters depicting such. some participants would point at a picture and say ‘lesbians’ or ‘gay couple’ with an obvious discomfort shown by their facial expressions or body language. there was heteronormative dominance in all the groups and general avoidance of responding to prompts about relationships between people of the same sex. when given the opportunity to match various cut-out characters who could be interested in a sexual relationship, none of the participants matched same sex relationships. when the facilitators matched a potential same sex relationship, some male participants showed hostility and strong disapproval, for example, one insisted: ‘male and male, no! female and female, no! only male and female.’ (joe, male, 28, afrikaans, fg4) for many, television (tv) seemed the most familiar reference to understanding same sex relationships rather than their own lives or community. for example, one female participant said: ‘yes, i saw it on tv. two lesbians and they live in a house together and they were kissing one another and one gave a ring to the other.’ (leah, female, english, 39, fg2) one of the male participants said the following about men having sexual relations with other men; which he related to a british gay singer who died of aids in the 1990s: ‘i know about it because freddie mercury died of it. i should not do it, it’s wrong.’ (victor, male, 47, english, fg6) knowledge and awareness of sexual violence this theme comprises two sub-themes: identification and reacting to risk and knowledge of terminology for sexual violence. identification and reacting to risk like the others, this theme showed that the participants had a degree of knowledge of some risks, but they also struggled to identify others. they showed knowledge of inappropriate touch which they referred to as ‘dangerous’: ‘now it’s becoming dangerous. that part that should not be touched. on the wrong spot…totally red light.’ (prisca, female, 36, afrikaans, fg1) ‘yes…underneath the bra…and underneath the panty parts…the guys touch the ladies…whole naked…and then they start getting pregnant…it’s dangerous.’ (talent, female, 39, afrikaans, fg3) they were also aware that if an older person had sex with a child, it would be abuse through recognising too wide an age gap between characters: ‘i think that one will be too young for him. he’s a parent. he must actually go with this one.’ (mavis, female, 28, english, fg5) they showed the understanding that a perpetrator can be known to the abused person: ‘i think someone in the family…or perhaps an uncle…or a stranger….’ (mavis, female, 28, english, fg5) they struggled with identifying lures either from a person known to them or someone they have just met. some thought that they could agree to going to the person’s house but say no to sex, not realising that they put themselves into a compromising position by agreeing to go. for example, a social story was related about a girl who meets a man at church or at a social gathering. she finds him nice and he asks the girl to go to his house with her. with regard to this, some participants responded as follows: ‘she can go sometimes.’ (lidia, female, 32, afrikaans, fg1) ‘she can go always.’ (zoe, female, 44, afrikaans, fg3) some recognised the risk and did not agree with their peers: ‘she must know him well, then she will probably feel more comfortable. you can’t just go to anyone’s house that you don’t know.’ (ella, female, 45, english, fg5) the risk of being lured on social media was not identified by most of them. one of the female participants thought it was enough to check if someone was in a relationship or married before accepting a friendship request on facebook and she herself had confirmed a request from a stranger before: ‘because for example i have someone i confirmed on facebook and then he says, “what are you doing now?” then he said “can you send a picture of you?” and i said i don’t know you why do you want my picture? … because he sent an invite and i checked all those things like is he married or in a relationship… i wanted to chat.’ (ella, female, 45, english, fg5) knowledge of terminology for sexual violence most of them were not familiar with the words ‘rape’ or ‘sexual abuse’. upon being asked which words described what a picture or a story depicted, they said things like ‘it’s dangerous’, or ‘it can be called bullying’ or ‘bullying isn’t it’. they would eventually show that they have heard the words before when the researcher mentioned them which showed that they were not clear what exactly the words described. a few who were clear said: ‘he’s touching her private parts, forcing himself on her and it’s called rape.’(victor, male, 47, english, fg6) ‘yes, it is rape, when his penis is forced into her private parts.’ (betty, female, 25, english, fg5) the following were responses to a picture depicting inappropriate touch whereby a woman was trying to escape from a man who was touching her: ‘force is a crime…and when he does it all the time, then you can go to the law…to tell them about it.’ (deon, female, 31, afrikaans, fg3) another one responded to a picture of an older man touching a much younger boy’s private parts with the boy’s face showing that he was afraid and attempting to escape: ‘he’s touching…that’s what we call touching.’ (luke, male, 29, isixhosa, fg6) past experience of abuse and/or attempted abuse five women from three of the women’s groups shared that they had either experienced forced sexual intercourse, attempted forced sexual intercourse or forced touch before. they were not asked for this information, but voluntarily shared it. thus, it is not clear if there were other abuse survivors who decided not to reveal such information. none of the male participants disclosed sexual abuse. most of the women shared this information in response to the questions on what the character should do when faced with a risk of abuse or after being abused. while talking about the right to say no, one participant shared how she resisted unwanted touch from a male bus driver and went on to report the incident. this was an important teaching moment, whereby the researchers affirmed the young woman’s courage in reporting and seeking help. such moments also opened the conversation to hear others’ thoughts and allowed the researchers to further emphasise the right of not to be abused, to seek help when needed and to report. she said: ‘once i also went through that, when the guy that drove the school bus touched me…he touched me here (showing her groin). i told him no, but he didn’t want to listen… he said i must keep quiet but i did not. i did and he lost his job.’ (prisca, female, 36, afrikaans, fg1) in response to the fact that one had shared her experience that she told and did not keep quiet, another participant said: ‘that’s what the uncle said to me…but i spoke out. some of the kids are forever staying quiet…and the men in turn will just carry on… i spoke…i didn’t listen to him who said that we should keep this secret. i spoke.’ (lidia, female, 32, afrikaans, fg1) another one shared what happened after she had been raped. she shared about how she went through counselling with a psychologist. she was more comfortable with opening up to the psychologist than her own mother: ‘apologies…when it happened to me, i saw a psychologist…and spoke about my experience… i spoke openly to the psychologist…because i was too scared to speak to my mother…because stories have a life of their own, my mother can tell people.’ (thato, female, 41, afrikaans, fg3) one of the participants shared about a traumatic experience of being raped while travelling on the train. it was evident that although the case had been reported and she had been through counselling, she was still suffering from the trauma as she avoided looking at pictures showing sexual behaviour. she was given the option to withdraw and go to speak to a counsellor, but she said she wanted to continue and she did not need any more counselling. her response to the pictures was: ‘i don’t really like it that touching. i don’t like it. i don’t like to look at the picture (looking away with a frowning face)… i don’t like these men. these men are not right. the man hurt me. he gave me aids… a man is a devil…and i showed the police that’s the guy who did it to me. on my body…in the train…he tore at me…tore at me…and tore my pants… he told me that i must go with him…and he was going to pay me ten rand.’ (mary, female, 37, afrikaans, fg2) knowledge of actions to take in case of abuse this theme showed a distinction between the level of knowledge shared by those who revealed past experiences of abuse and those who did not. they expressed the need to report to police, a family member or social worker and to go for a medical check-up. the police were identified as the most common place to go to report the incident of abuse and social workers were also identified as important role players: ‘yeah, to go to the police station so that the police can come and arrest the guy so that he gets set for the rest of his life to go to jail and so that it can be talked out in court.’ (betty, female, 25, english, fg5) ‘it might happen again and it might be worse so she needs to tell. maybe if she has a social worker. it depends where she works… (laughing).’ (thato, female, 41, afrikaans, fg3) on the contrary, there were some with erroneous knowledge and perceptions of whether to tell or not if one was abused. for example, in three of the four women’s groups there were participants who said that it was not necessary to report if the abuse only happened once and one should only report if it recurs: ‘if the man does it for the first time, you can keep it to yourself but if he keeps doing it you must report. only tell if he does it again.’ (deon, female, 31, afrikaans, fg3) there was also the belief that the victim of abuse can choose whether to report or not: ‘go straight to the police, and report what happened to her. on the other hand, if she refuses to report immediately…it’s up to her as she’s keeping it to herself.’ (betty, female, 25, english, fg5) the impact of the incident on one’s emotional and mental health were also identified: ‘maybe he talk it out, maybe to his family… if he wants to, if he doesn’t want to he can leave it. but i also think things like that you cannot let it stay inside because it’s bothering you, it won’t be good for you.’ (dylan, male, 44, afrikaans, fg4) some, from their past experiences, were clear of the need for preserving evidence for forensic examination and to have a medical check-up: ‘no, she doesn’t need to wash because that is evidence. otherwise the police can’t see…ok this lady was raped…or this lady wasn’t raped. if she washes her, then they can’t see anything … but if she doesn’t wash her … and then they will see.’ (molly, female, 39, english, fg2) some expressed lack of confidence and fear of being blamed as deterrence to reporting: ‘yes, the mom can shout at her and they can have an argument. she can change the story because she is too scared to tell the truth.’ (ella, female, 45, english, fg5) ‘maybe he will think his parents will be like ‘why did you let the other person touch you in the first place?’ (victor, male, 47, english, fg6) discussion the study attempted to explore adults with intellectual disabilities’ experiences, perceptions and knowledge of risks to sexual violence. their responses revealed that both men and women had some knowledge of risks to sexual violence, but they also had knowledge gaps and some erroneous knowledge and perceptions that could further increase their risk of sexual abuse and decrease their ability to seek help to stop sexual abuse if it occurred. the sources of their knowledge were a subject beyond the scope of the study, but some of their statements implied that those supporting them like family caregivers and service providers were their sexuality educators. many of them had experiences of love relationships which were mostly described as non-sexual. only female participants voluntarily disclosed the experiences of abuse and there was a direct correlation between the actual experience of abuse and knowledge of risk and awareness of the appropriate actions to take in case of being a survivor of attempted or actual sexual abuse. this section presents implications of the findings and suggests directions for future research, practice and policy framework. the perceptions and experiences of love relationships were deemed critical in this study, because understanding of healthy, consenting sexual relationships is important for one to be able to recognise abusive relationships. the fact that most of the women participants expressed a preference to be in non-sexual relationships makes it difficult to know whether they would have the agency to distinguish between a safe, consensual sexual relationship and an abusive relationship. a preference for non-sexual relationships could be reflecting what bernet and ogletree (2013) found in their study that women with intellectual disabilities chose abstinence because of fear, previous negative sexual experiences, just avoiding coping with sex itself or the idea of engaging in sex. negative messages about sex from parents and professionals could also contribute to their choices as implied by some of the narratives. a previous study in the same setting found that parents preferred their young adults with intellectual disabilities to form friendships for companionship, but they were against intimate or sexual relationships (kahonde 2016). the fact that the parents had to assent to the adults’ participation in the current study could have favoured the participation of those whose parents accentuated the abstinence-only discourse. in another south african setting, educators prioritised protection and the risk discourse and avoided teaching about sexual activity (hanass-hancock et al. 2018). in the current study, the findings are illustrative of this ‘no touch’ emphasis by both parents and service providers. hence, people with intellectual disabilities need education, not only to protect them from sexual violence but also to develop sexual agency as emphasised by hanass-hancock et al. (2018) and to understand their rights in a relationship. all the participants could recognise inappropriate touch and they could also recognise other forms of sexual abuse including rape as depicted by the pictures and narrated in the social stories. on the other hand, they equally struggled to identify some lures which could make them comply with the requests of the abuser. their responses corroborate the findings that people with intellectual disabilities may comply with the request of others without realising potential dangers (barger et al. 2009; smeaton & franklin 2018), even though some of our participants were clear about the dangers. within south africa, where risk and gender-based violence is exceptionally high, people with intellectual disabilities need constant messages about the dangers of being lured to follow people to secluded places even if they know them. we also suggest that each person with intellectual disability is supported to know and name at least two trusted people whom they can speak to if and when they need help. needless to say, sexual violence prevention programmes for people with intellectual disabilities in south africa need to take a comprehensive approach while also emphasising teaching correct terminology as the vague terminology used by some of the adults could be a barrier to reporting the cases of abuse. a review by barger et al. (2009) on international literature on the programmes for sexual assault prevention targeting women with intellectual disabilities found four programmes, two from australia and two from the usa. they recommended comprehensive programmes that emphasise the awareness of risk, assertiveness and self-confidence while including all the stakeholders in the lives of people with intellectual disabilities like family, formal carers, professionals, friends and having people with intellectual disabilities involved in the development, implementation and evaluation processes. following the findings of our study, we agree with barger and colleagues, and recommend the development of such programmes in south africa by services working on sexuality education programmes that communicate about healthy and unhealthy relationships and increase the awareness of the needs of abuse survivors in their recovery and healing. such programmes should be gender sensitive and disability inclusive. there is currently a lack of focus on identifying the needs of men with intellectual disabilities as research is biased towards sexual violence against women (barger et al. 2009; bernet & olgetree 2013; bornman & rathbone 2016; haffejee & theron 2017). the obvious reason given in the studies is that women are more at risk which is evidenced by the statistics of female victims both within the population of people with disabilities (broban et al. 2020) and among people with intellectual disabilities. although we did not aim for an in-depth gendered analysis in this article, we recognised the differences in the experiences of the women and men, for example, women tended to share experiences of past abuse and they suggested more passive ways of reacting to abuse. these findings call for support and empowerment interventions that cater for the specific needs of men and women. furthermore, it is imperative to explore how dominant heteronormative perceptions affect relationship beliefs and self-efficacy of women and men with intellectual disability. for example, the hostility expressed by some male participants towards a potential same sex relationship could make it more difficult for them to access information or support about same sex sexual behaviour, recognise same sex abuse and/or increase their reluctance to seek help if they have experienced same sex abuse. also, the tendency to associate same sex relationships with what is seen on television could be an indication of ignorance which may further exacerbate reluctance, denial, and hostility towards same sex relationships. the number of female participants who shared their experiences of sexual violence or attempted sexual violence confirm the alarmingly high rates of abuse among women with intellectual disabilities. not only strangers but people responsible for the care and support of these women like school bus drivers and uncles were implicated and it is apparent that the women are at risk in public places like trains, buses and at church. these findings are in line with the literature of abuse of women in general in south africa, whereby rape can occur in public places like post offices or schools (lyster 2019; nyokangi & phasha 2016). a study conducted in the western cape province by dickman and roux (2005) described 100 cases of sexual abuse assessed by the sexual assault victims empowerment programme between 1990 and 2000 comprising 94 complainants. they reported that in 89% of the cases, the perpetrator was known to the complainant, with 23% having familial connections with the complainant and three being staff members. the occurrence of abuse perpetrated by people who are known or family members present challenges when designing feasible prevention interventions as argued by barger et al. (2009) and providing support to the abuse survivor. for example, a person with intellectual disability may lack support in accessing intervention programmes if the perpetrator is a close family member or primary caregiver and the abuse may be minimised or denied by the family. more conversations need to happen with people with intellectual disabilities to encourage them to speak up, to ensure early identification of those at risk and bring the perpetrators to book. every organisation should have abuse prevention awareness education sessions and outreach. this needs to be supported by increasing family education around abuse and making them aware of the law and their responsibility to report abuse as well as training in the justice and police system to accommodate the needs of people with intellectual disabilities. furthermore, policy reform is imperative in south africa to enforce strict screening of the staff members working with people with intellectual disabilities, preclude employment of sex offenders and make the perpetrators serve heavier sentences rather than simply losing one’s job, as in the case shared by one of our participants. the participants were familiar with the need to report and seek help in case of abuse, but there were also some who were either unsure or lacked confidence to report abuse. a matter of concern was the common erroneous idea among some participants that if an abuse happens only once then it is not a crime but one must report if it happens repeatedly. this can put them at risk of accepting unwanted sexual lures from perpetrators as long as it is the first time or not reporting it if it only happens once. further exploration of the sources of such beliefs and understanding of abuse is needed in the research context. furthermore, sexuality education and abuse prevention interventions for people with intellectual disabilities should emphasise that abuse is a crime even if it happens once. no previous literature was found reporting such findings and we argue that researching sexual abuse through exploring the perceptions and experiences of people with intellectual disabilities reveals critical concepts that cannot be known when relying on other people’s subjective narratives. knowledge of people with intellectual disabilities’ individual circumstances is important as some may not be believed by their families or caregivers, or they may not trust their families, or they may withhold information out of fear. studies from other settings in south africa revealed that socio-cultural conceptions of intellectual disability may also influence the family and community responses to sexual victimisation of people with intellectual disabilities which have been elucidated earlier (hanass-hancock et al. 2018; meer & combrinck 2015). hence, with phasha (2009), we argue that sexual abuse is a community problem which needs to be addressed through community-oriented interventions. in line with this, curtiss and kammes (2020) highlighted the needed to use an ecological framework based on the ecological systems theory (bronfenbrenner 1979) to address sexual violence against people with intellectual disabilities. curtiss and kammes (2020) contend that sexuality education on its own is insufficient to prevent sexual violence but there is need to address vulnerabilities at each level of the system from individual, family, work, school, community, cultural institutions, social structures, policies and the broader cultural context. having suggested multi-sector interventions to prevent sexual violence against people with intellectual disabilities in the setting for the current study, an ecological framework is likely to be effective as a lens to approach these interventions. the ecological framework will enable a comprehensive approach, as suggested not only by the current study but also previous studies in south africa that reported the individual factors influencing the risk to sexual violence against people with intellectual disabilities as well as the perceptions, beliefs and practices of families, communities, and professionals working with this group (meer & combrinck 2015; phasha & myaka 2014). additionally, an ecological framework will enable a shift from only looking at people with intellectual disabilities as an inherently vulnerable group that needs protection to addressing environmental factors like societal ableism and rape culture. conclusions the study was an initial step in exploring the knowledge, perceptions and experiences of sexual violence against people with intellectual disabilities in cape town. involving adults with intellectual disabilities enabled the researchers to bring out the nuances of their perceptions and experiences which are critical for developing and implementing programmes to empower and protect them from sexual violence. researching the subject of sexual violence through a series of focus groups was beneficial for the participants as they learnt from each other and were also encouraged to share their own perceptions and stories in a space that was safe. we also identified the potential for peer support and peer education. the participants who were more knowledgeable of risks and with confidence to share their experiences inspired others who seemed to lack confidence to speak up in the group sessions. on the other hand, the experiences of others were important as reference points for the researchers to educate other group members. this study raised the need for proactive interventions and support to prevent sexual violence against people with intellectual disabilities as the adults seem to be learning through reactive support given after an incident of sexual violence. based on our findings, we suggested ways by which the existing gaps in supporting people with intellectual disabilities through prevention of sexual violence can be addressed. we conclude by reiterating the need for more research involving people with intellectual disabilities themselves and the different stakeholders in their lives so as to develop context and gender-specific theoretical frameworks to explain sexual violence against people with intellectual disabilities. to achieve this, we suggested the relevance of an ecological framework as a guiding tool in both research processes and implementation of the outcomes. limitations the study was not without its own limitations. firstly, the findings are based on verbal responses from participants without observation of their possible responses to different exemplary situations of abuse. it is not clear whether the knowledge they have, including what they were taught during focus group sessions, will be translated into action if they are faced with risks. secondly, their communication abilities were diverse and those with more verbal communication dominated the discussions although the researchers were alert to this and kept encouraging everyone to respond. thirdly, we did not investigate the participants’ knowledge of other factors that could increase risks like substance abuse. fourthly, despite the advantages of focus group discussions stated earlier, the group setting of a focus group may have inhibited some participants from expressing themselves fully. for example, heteronormative concept which prevailed in each group possibly inhibited voluntary discussion on same sex relationships. lastly, we recognise the possible limitations of having staff members as supporters during interviews, especially when discussing sensitive subjects like sexual abuse, for which the staff members have to intervene often. on the other hand, we deemed it as a strength of our data collection process as the staff members knew the participants well and understood their communication styles which was helpful in facilitating and supporting communication between the researchers and participants whenever needed. we suggest that this is an area that needs further attention in research involving adults with intellectual disabilities. however, this study plays a critical role in being the first of its kind to initiate the needed conversations and responses to the scourge of sexual violence against people with intellectual disabilities in the study setting despite these limitations. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions c.k. conceptualised the study, conducted the data collection, analysed the data, drafted the initial version of the article and co-authored the article to its completion. r.j. conducted the data collection, advised the development of data collection instruments and co-authored the article. funding information this work was funded by the national research foundation innovation postdoctoral fellowship (grant number: uid 116765). data availability the data that support the findings 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child sexual exploitation: research findings to support education with prevention and response’, education journal review 25(2), 31–47. world population review, 2020, rape statistics by country, viewed 02 november 2020, from https://worldpopulationreview.com/country-rankings/rape-statistics-by-country. abstract introduction methods results discussion conclusions and implications acknowledgements references about the author(s) tsigie g. zegeye college of education and behavioral sciences, bahir dar university, bahir dar, ethiopia citation zegeye, t.g., 2020, ‘an investigation on the status of resilience amongst adults with blindness in addis ababa’, african journal of disability 9(0), a628. https://doi.org/10.4102/ajod.v9i0.628 original research an investigation on the status of resilience amongst adults with blindness in addis ababa tsigie g. zegeye received: 05 apr. 2019; accepted: 29 june 2020; published: 10 nov. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: living with blindness for anyone, whether educated or uneducated, rich or poor, with adequate support or without it is seriously limiting. the quality of life of people with blindness is significantly influenced by the level of resilience they possess. the status of resilience of adults with blindness living in addis ababa is not known. objectives: against this backdrop, this study was designed to explore the level of resilience of adults living with blindness. the influence of some demographics on resilience was also examined. method: survey design was employed to carry out the intended objectives of this stud. data was collected from a random sample of 220 adults with blindness living in addis ababa using connor-davidson resilience scale. descriptive statistics, t-test and one way anova followed by scheffe post hoc comparisons were used to analyse the data. results: the results revealed that the level of resilience of adults with blindness was found below the average score with a mean score of 46.11. participants’ gender, time of onset of blindness, marital status and education seemed to influence resilience of blind adults. conclusion: adults having blindness currently living in addis ababa are less resilient than needed. resilience of adults with blindness is differentiated by their demographic characteristics. these people need an integrated effort to enhance their resilience capacity by reducing the barriers and challenges they encounter and promoting protective resources through the different wings of disability related services. keywords: resilience; adults; blindness; demographics; quality of life. introduction living with blindness is invariably a challenge to anyone regardless of one’s circumstances. how one lives without significant vision depends upon a plethora of factors within and outside of the person. the living situations of persons with blindness can be comprehended on a continuum where one end characterises utter poverty and almost non-human existence, and the other end portrays a successful life. people with blindness, though significantly less in number, at the positive end of the continuum are considered as resilient persons (demmitt 2017; masten & coatsworth 1998; waters 2013; wortaw & shiferaw 2015), whilst it is automatic that people at the other end are considered less or not resilient ones (alvord & grados 2005; bradley & corwyn 2002). why are some persons with blindness resilient whilst the majority of persons having blindness are not? although answering this question is not the purpose of this study, the answer to this question takes us to the barriers and challenges as well as protective factors operating on persons with blindness. whilst protective factors facilitate resilience, barriers and challenges impede resilience (zolkoski & bullock 2012). there are multiple definitions of resilience. according to luthar (2006), resilience is defined as the ability or set of qualities of people to withstand personal vulnerabilities and rise above environmental adversities. implied within this definition are three basic canons: (1) resilience resources are static traits found within the individual, (2) exposure to significant adversity or risk and (3) positive adaptation or outcome (howard, dryden & johnson 1999). for howard et al. (1999), resilience is only a result of personal qualities of the individual. according to these authors, if persons with blindness lack resilience, they will be blamed for not having some internal resilient abilities. however, daniel and wassell (2002) argued that resilience can be cultivated at any point during a lifespan and is not considered an inherent trait or characteristic of an individual. this implies that what we call resilience can be made and remade through the continuous and intricate interaction of individual and environmental factors across the lifespan of the person. other definitions of resilience acknowledge that resilience is a process that occurs in a distinct context, such as when a person exceeds the expectation that is warranted by an individual’s (or community’s) biographical field (arrington & wilson 2000) or a dynamic process through which positive outcomes are achieved in the context of adversity (cicchetti & curtis 2007; masten & reed 2002). the inclusion of context and process in this definition indicates a recognition that risks and positive outcomes vary between contexts and that resilience occurs as a process over time. these authors, however, did not recognise the fact that every individual including those with blindness can be resilient given the appropriate protective resources. thus, resilience is not only dependent on the characteristics of the individual, but it is also greatly influenced by processes and interactions arising from the family and the wider environment (bronfenbrenner 1986). more recently, ungar (2008) defined resilience as the outcome from negotiations between people and their environments for the resources to define themselves as successful amidst conditions collectively viewed as adverse. this definition is more comprehensive than preceding definitions as it acknowledges how the individual perceives their environment as they negotiate with it, the protective resources that are available to them in the environment and their own abilities as well as the risk factors or adversities found in the environment. so, it is more useful to think about resilience as residing in the contexts in which people live in and that it exists in people and in relationships between and amongst people (mcmahon 2007). norman (2000) also supported the view of the contextual or relational nature of resilience with his contention that a resilient or adaptive outcome is a process of interaction between environmental and personal factors. generally, across research and practice, there has been considerable debate over the definition and operationalisation of resilience (luthar, cicchetti & becker 2000). some scholars categorised resilience as a process, whilst others view it as an individual trait, some others categorise it as a dynamic developmental process and still some others equate it as an outcome. within this research project, it is believed that in the context of disability in general and blindness in particular, resilience is best defined as an outcome of successful adaptation to risk situations, provided that characteristics of the individual and environmental situations identify resilient processes. hence, knowing the status of resilience of persons with blindness is very important, as it informs any education, training and rehabilitation efforts for these individuals. research into resilience of typical population has progressively increased over the last five decades. indeed, when it comes to the experience of disability, resilience is implied and is generally understood to mean an attribute of the individual (ellis 2013). as a result, adults with disabilities are too often excluded from the category of resilient people simply because they have impairments and hence cannot be resilient (runswick-cole & goodley 2013) and are relegated to the category of the vulnerable and the passive (goldstein & brooks 2013). however, as resilience theory has progressed, resilience is no longer considered as existing exclusively within the domain of an individual’s personal qualities and it is found out that support services are also vital in fostering resilience (ellis 2013). studies also revealed that resilience develops through the complex interchange between an individual and his or her environment, in which the individual can impact a successful result by utilising internal and external protective factors (luthar & cicchetti 2000; richardson 2002). hence, resilience can be understood as an aggregate effect of various protective resources that enable a person despite adversity (campbell-sills, cohan & stein 2006). these insights imply that resilience can be made and remade by forces within and outside of the individual. it is then possible to think that people with disabilities in general and persons with blindness, in particular, can be resilient if we consider resilience not as an individual trait but as a relational product. hence, it can be argued that building resilience cannot only be a matter of building individual capacity, but also a matter of challenging social, attitudinal and structural barriers that threaten resilience development in the lives of adults with visual disabilities (katherine, dan & rebecca 2014). resilience research that was conducted based on the perspectives of people with disabilities in general and those with blindness in particular are disappointingly lacking (hart et al. 2013). luthar and zelazo (2003) also indicated that one of the weaknesses of research on resilience has been the exclusive focus on children and adolescents without disability. as factors that operate on persons with blindness are quite specific to the context in which they live to a great extent, information on the level of resilience of persons with blindness from other contexts would not be of much help for any remedial measures to be initiated to support these individuals having blindness in ethiopia. however, so far no study has been reported to investigate the level of resilience of adults with blindness (awb) in the context of ethiopia. thus, this study stands be the pioneer one in investigating into the status of resilience amongst awb in ethiopia. the levels of resilience may differ based on one’s developmental stage, gender, onset of blindness, education and marital status. experiencing blindness before or sometime after birth may not have the same impact on resilience development. children, adolescents and adults, men and women, the rich and the poor, non-educated and educated as well as those who are married or single may also not have the same level of resilience development (southwick & bonanno 2014; wagnild 2003). hence, studying resilience of awb as per these variables would be very influential in designing and implementing appropriate resilience building intervention programmes. rationale and objectives ethiopia has one of the world’s highest rates of blindness because of low socio-economic status, low awareness and inadequate health infrastructures (tirussew 2005; wortaw & shiferaw 2015). being the capital city, addis ababa hosts a large number of persons with blindness. this is largely because people with blindness from different regions migrate to addis ababa for various reasons, such as seeking service and support, as well as for begging on the streets and religious places. amongst people with blindness living in addis ababa, adults make a significant portion (yemane, alemayehu & abebe 2006). it goes without saying that the plight of persons with blindness, especially adults, in general in ethiopia is pitiable. even though the existing local and international legislations grant people with disabilities the right to appropriate and relevant support (e.g. fdre constitution 1987; moe 1994), the available evidences (e.g. breazeale 2014; sida 2014; tirussew 2005) suggest that the situations of the majority of awb are neither exciting nor encouraging. what precisely makes the lives of awb in the context of ethiopia so deplorable is not specifically known, though poverty, lack of adaptations and accommodations in the environment, poor-quality service provisions, and so on, are some of the factors implicated by tirussew (2005). however, resilience that is presumed to play a key role in the lives of awb has not been investigated into thus far within the context of ethiopia. to date how the demographics of persons with blindness and the time of onset of their impairment are associated with the resilience capacity of awb in ethiopian context has not been inquired into. the above paucity in research on disability-related resilience triggered this inquiry. the knowledge brought about to fill the above gaps would invariably inform any intervention programmes aimed at fostering resilience of adults having blindness through education, rehabilitation, skills training, gainful employment opportunities and other support services. this study, therefore, has aimed at assessing the level of resilience of awb who live in addis ababa. moreover, in particular, the examination of the association between resilience and gender, education, time of onset of blindness and marital status was also another objective of this investigation. methods design of the study a survey design was employed to examine the resilience status of blind adults residing in addis ababa. this design is appropriate when investigating specific variables of a proposed study and when seeking to discover possible relationships between groups of independent and dependent variables (brink & wood 1998). thus, using this design, the resilience status of blind adults and its associations with some demographics were investigated. sample adults with blindness who were active members of the ethiopian national association for the blind (enap) living in addis ababa constituted the population of this study. in enap, there were 3000 (1550 men and 1450 women) active adult members in the year 2018–2019. of this population, 220 adults (110 men and 110 women) between the ages of 20 and 64 years were selected using stratified random sampling technique. instrument the connor–davidson resilience scale (cd-risc) was the instrument used in the present study. connor–davidson resilience scale is a psychometrically strong 25-item questionnaire rated on a five-point likert scale with response alternatives ranging from 0 (not true at all) to 4 (true nearly all the time). scores are summed up to determine the total resilience score that can range from 0 to 100, where higher scores reflect greater resilience. connor–davidson resilience scale was reported to have sound psychometric properties with greater reliability and validity compared with other resilience scales (goins, gregg & fiske 2013). it was tested across different groups of respondents for reliability and the results yielded an average cronbach’s alpha of 0.89 and item-total correlations ranged from 0.30 to 0.70. a review of studies that used the cd-risc demonstrated that cd-risc is a valid instrument for measuring individual’s resilience in a variety of populations, such as large community samples, survivors of various traumas, caregivers of persons with alzheimer’s disease, adolescents, elders, patients in treatment for ptsd, members of different ethnic groups and cultures and selected professionals or athletic groups (see connor & davidson 2003). the english version of cd-risc was translated to amharic (the mother tongue of the participants and the national language of ethiopia) following all the rigours of instrument translation and the amharic version was used for data collection. an internal consistency reliability check was conducted using the final data collected for the study and the cronbach’s alpha was found to be 0.92. procedures of data collection on completion of pre-data collection preparations, three data collectors were recruited and trained on data collection procedures. the training included contents on rapport creation, respecting the respondent, reading the items without exerting an influence on response selection by the participants, entry of data in the instrument, and so on. the survey was administered in a paper and pencil format with the participant sitting near to the data collector in private settings. as the participants were having blindness, the data collectors read everything in the instrument and made sure that the respondents understood what was read. participants were informed of the purpose of the survey and the ethical guarantees were in place. subsequently, the data collectors read item by item, secured the responses of the respondents and entered into the instrument. the participants were provided with the opportunity to ask for any clarification at any point in time during the entire data collection process. data analysis the data were entered into the statistical package for social sciences (spss) (version 22) software and checked and edited in preparation for quantitative analysis. descriptive statistics were used to calculate the levels of resilience. independent samples t-test, anova and scheffe post hoc pairwise comparisons were employed to compare the resilience of participants grouped based on some demographics. ethical consideration ethical guidelines were followed while conducting the study. permission was obtained from the participants to use the information they provided solely for the purpose of this study. participants were assured that their identities would remain anonymous and would not be used while reporting the results. all participants were oriented to understand their rights to confidentiality and anonymity in the research process and the right to withdraw from the research at any time without reason. results resilience status of adults with blindness to determine the resilience status of awb, descriptive statistics were computed. the results are presented in table 1. this provides an indication of the range, minimum and maximum values, as well as the mean and standard deviation for the resilience scale in which adults scored themselves regarding their resilience status. table 1: descriptive statistics of resilience of adults with blindness (n = 220). as shown in table 1, on a possible score range of 0–100, the sample scored a mean resilience score of 46.11 (sd = 11.91). the scores ranged from 25 to 84. in light of the maximum possible score and the minimum possible score that suggest stronger and weak resilience, respectively, the mean score of the sample can be interpreted as significantly low. the minimum and maximum scores also indicate that there were no outlier scores showing higher resilience but that one or more of the individuals showed a resilience score that fell in the high score range, which points to a higher resilience. relationship between demographics and resilience sub-samples were formed based on the sample’s gender, onset of blindness, marital status and education. independent samples t-test, one-way anova and post hoc pairwise comparisons were employed to examine if significant differences existed as a function of the demographics mentioned above. independent samples t-test between men (m = 49.45, sd = 13.48) and women (m = 42.78, sd = 12.66) yielded a statistically significant mean difference on resilience (t[218] = 3.17, p < 0.002). to examine if time of onset of blindness influenced resilience, participants were grouped into adults with adventitious (m = 48.65, sd = 12.05) and congenital (m = 43.05, sd = 11.26) blindness. independent samples t-test revealed significant mean difference between adventitiously and congenitally blind adults (t[218] = 2.65, p < 0.009) on their resilience. to examine the relationship between marital status and resilience, three sub-samples were formed, namely single (m = 42.61, sd = 11.63), married (m = 53.17, sd = 14.35) and divorced (m = 41.76, sd = 13.50). one-way anova showed a significant mean difference amongst the three groups (f[2,217] = 12.68; p < 0.000). follow-up scheffe post hoc pairwise comparisons disclosed a significant mean difference between those who were single and married (md = −10.56, p < 0.000) and between married and divorced respondents (md = 11.41, p < 0.001). no significant difference was found between single and divorced respondents (md = 0.85, p > 0.05. to explore if level of education influenced resilience, the sample was sub-grouped into with non-formal education (m = 37.83, sd = 10.38), with primary education (m = 39.66, sd = 9.63), with secondary education (m = 49.02, sd = 12.84) and with tertiary level of education (m = 52.11, sd = 11.37). result of one-way anova indicated a significant mean difference amongst the groups compared (f[3,216] = 11.86, p < 0.000). further, scheffe post hoc comparisons revealed significant mean differences in four out of six comparisons made revealing a general trend that as adults’ level of education increases, their resilience also increases. the results of post hoc comparisons are shown in table 2. table 2: results of scheffe post hoc comparisons across level of education (n = 220). discussion resilience status of adults with blindness the mean resilience score of 46.11 on a possible score range of 0–100 is invariably an unwelcome position for any population. although 100 could be considered ideal, a mean score closer to 100 or significantly above 50, the middle value of the possible score range, would have been an encouraging result. indicating a weak status of resilience, the sample’s mean score fell just below the median scale value. persons with blindness would require stronger and higher level of resilience than persons without blindness as the demands placed on them by their sensory limitations as well as environmental barriers would demand extra capacities to tackle the day-to-day demands. this becomes more so in underdeveloped or developing world because inclusive provisions and infrastructure are very much limited, if not non-existent, in such societies. why is the level of resilience so low in this population? though answering this question is beyond the aim of this study, an answer to this question can emerge more meaningful after exploring the status of barriers and challenges encountered as well as protective resources available for persons with blindness. finding low level of resilience amongst awb may be a surprising result in a country where disability issues have been addressed for several years predominantly through legal and policy initiatives. this result then implies that working on policy and legal issues as well as broadcasting disability issues alone will not enhance the resilience capacity of persons with blindness unless concerted efforts are made to remove or minimise the various barriers and challenges that these individuals face. in line with this finding, several studies (e.g. alvord & grados 2005; bradley & corwyn 2002) indicated that individual’s resilience capacity or level of resilience is lower when there is higher exposure to barriers or risk factors and lower levels of protective resources available for people with disability at different levels of the environment. resilience and demographics resilience is a complex concept and it is defined differently in the context of individuals, families, organisations, cultures and societies. however, there is a general consensus that the empirical study of resilience needs to be addressed from a multiple level of analysis that includes genetic, developmental, demographic, cultural, economic and social variables (arrington & wilson 2000; daniel & wassell 2002; luthar 2006; southwick & bonanno 2014). similar to these perspectives, the present study investigated the limited knowledge regarding the associations between resilience of persons with blindness across their demographic variables such as gender, education, onset of blindness and marital status. resilience capacity may vary based on the social and environmental resources available for a person. these resources may not be equally provided or available for men and women across different cultures. in a culture where disability is misperceived and stigmatised, people with disabilities face many deprivations and maltreatments at different levels of their environments. this maltreatment and neglect may be more severe when it comes to women with a disability, especially in less developed nations such as ethiopia (tirussew 2005) as gender inequality is the order of the day, even today in such developing nations. as expected, the results of the present study indicated a statistically significant resilience mean difference between men and women, wherein men have greater resilience than women. findings of previous studies from other contexts on the association between resilience and gender were inconsistent. whilst some studies indicated the absence of associations between resilience and gender (e.g. wagnild & young 1993), several other studies found strong associations where the level of resilience was higher in women than men (e.g. sun & stewart 2012). these studies attributed greater resilience of women to the presence of more positive connections of women with parents, teachers, adults in the community and peer relations and autonomy experiences of women than men. in contrast, going along with the current result, friburg et al. (2005) and bonanno (2004) reported that men predicted increased likelihood of resilient outcomes than women. furthermore, bonanno et al. (2007) observed women as less than half as likely to be resilient as men. all these inconsistent results on the association between resilience and gender appear to inform that resilience development varies across contexts and cultures, based on the availability of protective resources in a specific context at a given point in time. in ethiopia, although women are respected and protected, they are placed far below than men in social significance. women in ethiopia have traditionally been considered as child bearers, home makers and not as contributor to the economic resources of the family and society. hence, for women in general and women with disabilities in particular, protective resources at different levels of the environment may not be made as available as they are for men. women with blindness are at double disadvantage for being women and having blindness. the lower social status assigned to women coupled with the stigma and stereotypes attached to disability may be jointly contributing to their lower level of resilience in comparison to men. as this study is not in a position to make such a conclusion based on existing data, further research is indicated. an additional demographic characteristic that was hypothesised to influence resilience was the time of onset of blindness. blindness that occurs at birth or shortly afterwards (congenital) and acquired later in life (adventitious) will not have the same impact on resilience development as the psychological and day-to-day demands and challenges generated by the time of onset are drastically different. with this presumption, when adventitiously blind respondents were compared with congenitally blind respondents, a statistically significant difference in resilience emerged wherein persons with adventitious blindness were found to be more resilient than those with congenital blindness. on the association between time of onset of blindness and resilience, the existing literature is very much inconsistent. for instance, bonanno (2004) explored and compared the level of resilience amongst the sighted, congenitally and adventitiously blind people. the results revealed that people with congenital blindness had higher levels of resilience of the three groups. however, another study, consistent with the result of the present study, revealed that people with adventitious blindness had greater resilience than those with congenital blindness (zeeshan & aslam 2013). this may be because individuals with adventitious blindness may retain significant visual memory to profit from descriptions of a visual nature. even when they retain no visual memory, they still hold the advantage of their previous visual learning, which would motivate them to move about, discover and interact with their environment. they are often more active, curious and better coordinated than people with congenital blindness (bonanno 2004). furthermore, the intervention and prevention measures in place in the environment where people having blindness live, although vital for both congenitally and adventitiously blind individuals, are of paramount importance for congenitally blind persons as they are to capitalise on such services available for their day-to-day life because they do not have or retain any visual memory. provisions aiming to rehabilitate or habilitate awb in ethiopia are strikingly inadequate as well as inefficient. stated otherwise, the protective resources available at various environmental sub-systems in addis ababa may be very much inadequate for congenitally blind persons than adventitiously blind. people with blindness living in such societies are expected to face serious challenges, impeding their resilience. this is all the more true for congenitally blind persons. such an insight looks more grounded in the context in which this study was conducted. on many measures, married people, on average, do better than those who are divorced or living single. therefore, being married is a sign of an advantaged state as it is associated with higher earnings, longer lived relationships and lower risk of poverty (clarke & mckay 2008). marriage also connects people to other individuals, to social groups (e.g. extended family) and to other social institutions, which are additional sources of social benefit (waite 1995). this evidence implies that being married serves as a buffer against challenges and adversities associated with all types of disabilities and blindness in particular. the comparison made to examine the influence of marital status on resilience of the population yielded a result supporting the above insight. that is, awb in a married relationship are more resilient than those adults who remain either single or divorced. furthermore, single and divorced sub-samples do not differ on their status of resilience. this result shows that living in a marriage relationship mitigates the adverse effects of blindness. it may be argued that marriage may be serving as a source of support for a spouse having blindness by promoting responsiveness for the needs of him or her by a partner and acts as an important protective resource to encourage resilience development. remaining single and living divorced are two most demanding life experiences in adulthood (stroebe & stroebe 1997) and this may be more so for persons with blindness because the support that can be expected from a caring partner cannot be replaced with anyone else. life for single and divorced awb who live in addis ababa may be more demanding because environmental barriers are in abundance here and support systems for them are at the lowest. the positives of being a married couple, with the poor rehabilitation provisions and varying environmental barriers, should explain the difference observed as a function of marital status of the samples. education is one of the greatest contributing factors to resilience development for everyone; true to awb too. education helps pwbs to have improved life outcomes by providing various means and opportunities to overcome the challenges and barriers of life. it was also found that educated adults including adults having blindness had higher scores on resilience as compared to less and non-educated adults (e.g. holland & schmidt 2015 levine 2003; zeeshan & aslam 2013). similar to those findings, the present study also came up with a statistically significant difference in the status of resilience amongst awb with differing levels of education. the general pattern observed in this study is that the level of resilience increased as persons with blindness climbed up the ladder of education. although an ascending trend could be observed in the resilience status of the respondents grouped under non-formally educated, with primary, secondary and tertiary educated, respondents with primary and secondary education do not differ significantly. other than this, the trend is evident that the more educated groups of awb were having significantly higher levels of resilience capacity. ample evidences exist in the literature linking higher level of resilience and success to higher level of education (e.g. levine 2003; adriance & shaw 2008; zeeshan & aslam 2013). it can be reasonably argued that education promotes personal resilience factors such as self-confidence, higher self-esteem and positive view of the future, higher intelligence, self-regulation, effective coping and problem-solving skills, which in turn, strengthen resilience. education may also help awb to find or create external protective resources at various levels of their environments that otherwise would have been remained absent. it can also be expected that higher level of resilience may be accompanied by many positive life outcomes such as securing a good job, higher level of education, being married and having kids. generally, present and previous results showed the role education plays in nurturing resilience in pwb. hence, it has a strong implication to place higher stress on education to all the habilitation and rehabilitation efforts designed for persons having blindness. conclusions and implications this study sheds light on the status of resilience of awb living under the present context of addis ababa, ethiopia. adults having blindness currently living in addis ababa are less resilient than needed. gender makes a difference to resilience; male awb are more resilient than female adults. adults with adventitious blindness are more resilient than those with congenital blindness, indicative of the influence played by the time of onset of blindness in resilience development. being in a marital relationship enhances resilience, blind adults who live in a married relationship are more resilient than those adults who are single and divorced. education enhances resilience of adults having blindness; those who have higher level of education are more resilient than those with lower levels of education. the findings of the present study highlight that resilience is differentiated by demographic characteristics of people with blindness, and thus they are subject to change. this has strong implication for all the habilitation and rehabilitation efforts. helping persons with blindness to live as independently and productively as possible in society is the ultimate objective of any rehabilitation and habilitation efforts, where the philosophy of quality of life underpins such efforts. quality of life can be achieved only if resilience of persons living with blindness is enhanced. as barriers and challenges at different environmental levels impede resiliency, reducing or eliminating these factors to the fullest extent possible would go a long way in strengthening resilience. the findings of the present study also highlight the importance of providing persons with blindness with the opportunity for education as education plays a vital role in resilience development. an integrated effort to enhance resilience by reducing the barriers and challenges and promoting protective resources through the different wings of disability-related services so as to build an inclusive society is the pertinent implication of this study. adults with blindness who live and operate in such a society would naturally be more resilient which, in turn, would enhance the quality of their lives. acknowledgements the author would like to thank dr melaku mengistu, an associate professor of educational policy and leadership, bahir dar university. the author would also like to extend his heartfelt thanks for his valuable comments whilst preparing the manuscript for publication. competing interests the author declares that no competing interests exist. authors’ contributions i am the sole author of this article. funding information this research received no grant. data availability statement data sharing is not applicable to this article. disclaimer the views and opinions expressed in this article are only my own. references adriance, e. & shaw, 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behavioural sciences, university post office, kwame nkrumah university of science and technology, kumasi, ghana dates: received: 01 mar. 2015 accepted: 02 july 2015 published: 29 sept. 2015 how to cite this article: owusu-ansah, f.e., 2015, ‘sharing in the life of the person with disability: a ghanaian perspective’, african journal of disability 4(1), art. #185, 8 pages. http://dx.doi.org/10.4102/ajod.v4i1.185 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. sharing in the life of the person with disability: a ghanaian perspective in this original research... open access • abstract • introduction • the concept and experience of caregiving • clinical cases1    • case a    • case b    • case c • common themes • intrapersonal processes    • reappraisal of motive and role as caregiver    • depression    • conflicting emotions of anger and guilt • interpersonal processes • therapy outcome as recommendations for caregivers’ self-care    • awareness    • meaning-making and positive reappraisal    • support    • time off    • exercise    • forgiveness    • journaling    • trust in a higher power • conclusion • acknowledgements    • competing interests • references • footnotes abstract top ↑ this thought article was a hermeneutic inquiry into the experiences of informal caregivers of the elderly who are also physically disabled. the experiences of some ghanaian informal caregivers were examined in three clinical cases and laced with the lived experiences of the author as an informal caregiver and clinician. two processes were explored. the first relates to how a caregiver is changed through the experience of caregiving by examining the intrapersonal and interpersonal dynamics affecting caregiving. secondly, the positive ‘shifts’ that occurred in therapy were explored. in the present ghanaian society it appears that care for the elderly disabled is compounded by the rapid migration of many ghanaians to ‘greener pastures’ in search of a brighter future, with consequent empty homesteads and fragmentation of the socio-cultural practices that hitherto buttressed informal care for the aged. in the absence of well-established professional care facilities, informal caregiving with its numerous challenges has become the norm for many. this article posited that caregiver self-care is the most important, and yet often forgotten, aspect of informal caregiving. when this is neglected, caregiver burnout is sure to occur, which results in poor physical, mental and emotional health for the caregiver. in this state caregivers may injure both themselves and the care recipients. introduction top ↑ ghana, like the rest of the world, is changing fast and losing some of its traditional systems and practices to modern ways of living with implications for the care of its disabled elderly. one specific societal change is the perception and definition of ‘family’. these days many think of family as mother, father and children quite nuclear. this was not the case many years ago. growing up, living with many members of the extended family was the norm. everyone was ‘family’ and there was hardly any distinction between ‘real’ siblings and cousins, nephews, aunts and uncles. even the architectural design of homes has changed. back then homes were larger, circular in style, unwalled and spacious, suggestive of an ‘all are welcome’ attitude. now, homes are generally smaller, walled and can only accommodate the parents and children, with one or two guest rooms. extended family members are welcomed, but only for a while before they become a nuisance. it appears that the ghanaian society is gradually losing its extended family culture, with implications for the provision of care for the elderly and disabled. another observation of a social change is the plethora of newly built homes that are sparsely inhabited and practically ‘empty nests’, mostly because the adult children of families have travelled abroad in search of greener pastures. where there are remaining adult children in the country, or in the vicinity, they might not live with their parents because of their own responsibilities and busy lifestyle that make it difficult to live with or provide adequate care for elderly and disabled parents. the elderly disabled parent either lives alone or is primarily in the care of a house help. in a country like ghana, where professional hospices are practically non-existent, hired hands or some family members are solicited as informal care providers. provision of care in these situations is fraught with challenges, such as the quality of care provided, the caregiver's self-care, as well as the lack of support and understanding for the ways in which a caregiver is changed by the role and process of caregiving. ghana, like other predominantly collectivist african countries, prides itself in its community-oriented, interdependent way of life. it is a culture in which people's concept of being human is anchored in meaningful relationships. in the native languages, being ‘human’ (‘nnipa’) basically refers to the ability to relate well with others, to care about the well-being of another (sarpong 1991, 2002). therefore, within this social context, care for the elderly would not only be a cultural expectation, but would also be perceived as a human responsibility – a humane and noble task. in recent times, however, it is questionable if this is still true since many elderly and disabled parents are in the care of non-family hired hands, and some are neglected by family members. it appears that ghanaian collectivist values are becoming a thing of the past, particularly in respect of the care of the elderly. it appears that the present ghanaian society has a niche for non-family mercenary home care services for the aged disabled. these reflections motivated the hermeneutic inquiry into the effects of informal caregiving as presented in the context of therapy. the method of phenomenology, as an inductive qualitative research, is rooted in husserl and heidegger's philosophical traditions (reiners 2012). heidegger's interpretive hermeneutic approach is used because it is better suited for this investigation. the everyday experiences of three informal caregivers of elderly disabled, who sought psychotherapy to support their role as caregivers, are described and interpreted to highlight the challenges within the ghanaian cultural context. these women sought therapy at different times between march and december 2011. their stories are recapitulated to delineate key challenges and issues reported. their common experiences are described and interpreted to examine two things: firstly, how the caregiver is changed by the experience of caregiving and, secondly, what they found helpful in their self-care and recommended here for informal caregivers within the ghanaian context. according to heidegger, it is impossible to negate own experiences about a phenomenon under study (giorgi 2007). therefore, the writer's experience as an informal caregiver and clinician are not bracketed. however, to ensure the validity of data and the emerged common themes obtained through content analysis, an independent reader was engaged to read the case reports for validation. the main aim of this article is to bring more attention to ‘family caregivers’ (e.g. daughters) in ghana who provide care for the disabled elderly and to highlight some of their peculiar challenges. these family caregivers could also be considered informal caregivers since they provide unpaid caregiving services to their disabled elderly. primary informal caregivers are those who are solely and primarily responsible for the care recipient. a secondary informal caregiver is not solely responsible for the care recipient, but provides assistance to the primary caregiver (goodhead & mcdonald 2007). the concept and experience of caregiving top ↑ the ghanaian culture values respect for the elderly. generally, it is also a culture of interdependence within which children are the ‘social security’ of their parents and are expected to care for them in their elder years, particularly when they are infirm (sarpong 1991). in this traditional context, care of the elderly would be considered a filial piety. this concept of caregiving, in the ghanaian context, is rooted in the culture of the people. however, given the social demands in the life of the modern ghanaian, it appears that some of these values are waning. the experience of providing care for another, whether voluntary or compelled by life's circumstances, impacts both the caregiver and the care recipient. when it is voluntary, it can be an intrinsically fulfilling experience (tang 2008), even in the midst of challenges (akintola 2010). several studies attest that a caregiver's quality of life is affected positively, negatively or both. while some caregivers find fulfilment and greater resilience they did not know they possessed, others are negatively affected to the point of a burnout (savage & bailey 2004). the nature and extent of the impact is moderated by factors such as the caregiver's age, cultural background (sörensen & conwell 2011; wallhagen & yamamoto-mitani 2006), attachment (ainsworth 1989), intrapersonal resources or vulnerabilities, financial status, health or disability status, as well as the level of dependence of the care recipient (savage & bailey 2004). generally, a review of the literature suggests that caregiving is a complex phenomenon that produces both psychological rewards as well as distress (turner & findlay 2012). the experience of caregiving, whether negative or positive, affects the caregiver's quality of life (tang 2008) and ‘changes’ the caregiver (savage & bailey 2004). drawing from over eight years experience as an informal caregiver to an aged and visually impaired mother, the author knows that the experience of caregiving does change the caregiver in many ways. among other things, it provides occasions for deep and personal introspection, reappraisal of own values, and opportunities for self-transcendence. it was during the time she took care of her visually impaired mother as a primary informal caregiver that she worked in her practice as a clinical psychologist with the women described in this article. given her personal experience as a caregiver, she was delighted to have clients who were also primary informal caregivers to their elderly and disabled parents. she could relate, for example, to their experiences, sentiments, struggles and ‘resolutions’. her caregiving experience enhanced her clinical skills and made her better able to understand and help them. reflecting on her role as therapist in their ‘personal journeys’, and on her own experience as a caregiver, birthed this thought article. therefore the experiences of these three women, presented below, were used to examine the intraand interpersonal dynamics affecting caregiving in the ghanaian context. clinical cases1 top ↑ case a amy is the third child of five she has three sisters and a brother. she cares for her 82-year-old visually impaired and somewhat demented mother. she is the only one in ghana as her four siblings live in europe and north america. the death of their father, almost a decade earlier, saw the onset of her mother's health problems and eventual loss of sight. as a professional banker, amy lives away from her mother and commutes almost daily for about an hour to visit and see to her needs before going home to her own family or to work. she is assisted by a hired hand, a young adult. amy often wondered why she had accepted this role in the first place because, like her other siblings, she could have chosen ‘not to come back to ghana’ after her studies abroad. since her mother's memory is gradually deteriorating, her mother cannot remember amy's visits and bitterly complains when she has not seen her for even a couple of days. amy was deeply frustrated and angry with her siblings, who were reportedly ‘going on with their lives’ but ‘frequently phoned to give all kinds of instructions’ on how she should care for their mother. she sought therapy to deal with the pain and frustrations she experienced as her mother's caregiver. her stated goals for therapy included how to deal with the depression, pain, frustrations, and ‘the helplessness of watching my mother deteriorate’, plus ‘other emotions i cannot even sort out’, she said. case b evelyn is a 47-year-old woman who lives with her 71-year-old mother, who has diabetes and is hypertensive. complications from the diabetes resulted in the amputation of one leg at the knee and is gradually causing visual impairment and incontinence. evelyn is the sole caregiver because she is an only child and her own children are too young to give her meaningful assistance. by nature gregarious and extroverted, evelyn looks forward to her daily quiet time with as little external input as possible, especially after a long day. but caring for a visually impaired mother who relies heavily on audio input to orient and to feel connected with the outside world requires that the radio in her home is constantly blurring. even though she sincerely dislikes the constant ‘noise’ from the radio, she leaves it on ‘for mother's sake’ and ‘i put up with it’. she came to therapy emotionally and physically exhausted and consumed by the role of providing care. she wanted to ‘find an outlet’ and ‘someone to talk to’. case c mercy is a 28-year-old mother of a 10-year-old boy who is mentally challenged with an expressive speech disorder. she is the sole caregiver of her son because ‘my husband blamed me for kofi's problems and divorced me when he was barely two years old’. after the divorce she moved home to live with her parents. this placed her as an informal caregiver of her aged father (76 years old) who had an accident a few years prior and lost mobility in his right leg. her presenting complaints included feelings of depression, guilt, anger and resentment at having to be the primary caregiver to her son and father. she was desperately seeking for a special school where she could place her child, hopefully remarry, find another caregiver for her father and ‘move on’ with her life. common themes top ↑ even though these women sought therapy at different times of their ‘journey’ as informal caregivers, there were several common experiences they shared about their role as caregivers of elderly and disabled parents. some of the presenting issues had to do with the client's own internal processes (e.g. feelings of depression, anger and guilt; reappraisal of motive for role as caregiver), and others had to do with their relationships with significant others, including the care recipient and their own siblings, which affected both their quality of life as well as their caregiving. though differing in background and experiences, the dominant emotions expressed were generally depressive and negative, suggestive of poor well-being and satisfaction with life. interestingly, what these clients reported is also common among other informal caregivers.2 for coherence, the common intrapersonal dynamics observed among the clients will be presented, followed by the interpersonal issues and challenges. intrapersonal processes top ↑ reappraisal of motive and role as caregiver in the initial stages of therapy, all of the clients appeared to be struggling with coming to terms with their role as caregivers. likewise, all felt compelled by life circumstances to be informal caregivers to their elderly and disabled parents. amy (case a) was the only daughter resident in ghana since her other siblings were all outside the country. evelyn (case b) seemed to have taken up the role in conformity to the expected cultural norm or duty for an only daughter, that is, filial piety. mercy (case c) was thrust into the role because of the divorce from her husband and the need to return to the family home. they struggled to find a more intrinsic ‘reason’ for assuming the role other than what seemed obvious and thereby make the experience ‘meaningful.’ meaning-making appeared to be a coping strategy for all of them. working with these clients, it became apparent that for the experience of caregiving to be meaningful, it is important that caregivers clarify for themselves the motive for assuming the role. is it out of filial piety? is it to do what is expected of a dutiful daughter, son, wife or husband? is it a voluntary desire to assist another human being in need? the answer may be a ‘mixed bag’ not readily clarified or forthcoming. however, daring to ask these questions is a good start to finding some answers and clarity. for all three women, this was an important aspect of the therapy that helped them attain some peace of mind and acceptance of the challenges of their role as informal caregivers. as amy (case a) later put it: ‘i didn't realise that this experience will change me in the ways that it has’. indeed, wicks (2003:3) affirms that ‘difficult times and situations can offer graced moments in more striking ways than the good times can’. however, before positive reappraisal and appreciation are possible, suffering is sure and can only be embraced with clarity of intention and meaning-making of an experience (wallhagen & yamamoto-mitani 2006). depression another common presentation among the clients was depression, which is also common among informal caregivers (lavela & ather 2010; navaie-waliser et al. 2002; pinquart & sörensen 2007), and tends to be higher among those who take on the caregiving role involuntarily (savage & bailey 2004). symptoms of depression include feelings of sadness, loneliness and helplessness. amy expressed it as ‘watching someone you love gradually dying before your eyes […] and there's very little you can do about it’. for her, observing her mother ‘shrink into a skeleton’ of her once full-bodied self as she battled with diabetes was particularly hard and even more so knowing that there was not much she could do. it engendered a sense of sadness and helplessness that she found difficult to talk about. depression also sometimes presents as boredom and anhedonia. evelyn (case b) found ‘always being home and doing the same things over and over’ both boring and depressing. she described the humdrum of assisting her mother with the activities of daily living as challenging, boring and depressing. the repetitive nature of assisting with daily activities and the accompanying boredom can spur the onset of other symptoms, like physical and mental fatigue, anhedonia, loss of concentration, forgetfulness, irritability, changes in mood and vegetative behaviours. self-esteem issues are particularly evident among older caregivers (lavela & ather 2010; pinquart & sörensen 2007) and persons who provide caregiving for a long time (savage & bailey 2004). depression in the caregiver may not present as major depression, but can be dysthymic in nature. feeling ‘hemmed in’ and experiencing a loss of pleasure in previously enjoyed activities is characteristic of a mild and chronic form of depression known as dysthymia. in describing her lack of joy and feelings of constraint in what she did, mercy (case c) expressed her frustration: [y]ou do things you would rather not do and almost never get to do the things you want to do. it is as though your life has been completely taken over by another. these conflicting emotions and frustration of unfulfilled personal longings have also been observed in other caregivers (mwinituo & mill 2006; navaie-waliser et al. 2002). fatigue in the caregiver is both physical and psychological (lavela & ather 2010; swanson et al. 1997). while physical exhaustion is associated with the mundane task of providing care (pinquart & sörenson 2007), psychological exhaustion is compounded by behavioural problems of the care recipient and the quality of the caregiver-recipient relationship (juster & marin 2011; kasaya, polgar-bailey & takeuchi 2000; savage & bailey 2004). caring for an infirm and visually impaired person with a high level of dependence is particularly tasking, as was the case for both evelyn (case b) and amy (case a). both clients reported a psychological and emotional fatigue that was an ever present ‘sense of responsibility’ that ‘sits on the mind’, even when one is physically away from the care recipient. the mind is constantly preoccupied with concerns or thoughts of the sick so that, away or near, the caregiver is mentally tethered. the extent of emotional drain and burden of care is moderated by age (lavela & ather 2010), gender (larrañaga et al. 2008), self-esteem and knowledge (aziz, salama & el-soud 2012; okoye & asa 2011; savage & bailey 2004), status as primary or secondary caregiver (vincent-onabajo, ali & hamzat 2013), and attachment to the care recipient (ainsworth 1989; navaie-waliser et al. 2002). the psychological and emotional fatigue, also referred to as ‘burnout’, sometimes expresses as irritability also symptomatic of depression. in this state, the quality of care and health of both the caregiver and care recipient are compromised. conflicting emotions of anger and guilt feelings of anger and/or guilt are not uncommon among informal caregivers (galluzzi 1999; kasaya et al. 2000; vellone et al. 2011). both amy and evelyn presented symptoms of depression, tinged with anger and guilt. amy's role as caregiver was somewhat voluntary, but she was angry with her ‘absent’ siblings who criticised instead of appreciating her caregiving sacrifices for their mother. similarly, evelyn (case b) and mercy (case c) resented their role and felt forced into it by life's circumstances. similar resentment or anger has been found among other informal caregivers who assumed their role involuntarily (lavela & ather 2010; ogunlana et al. 2014; savage & bailey 2004). the anger observed in these women, though differently motivated, was mixed with guilt, and the presentation of guilt was different for each of them. amy and mercy felt guilty over their own feelings of anger and resentment about their role. additionally, whenever mercy left her son or father in another's care and went away for a few days, she reported feeling guilty. evelyn's guilt was an offshoot of her own awareness of self-directed anger because she felt she was not conforming to the cultural expectation of being a ‘good daughter’. at other times, she reported feeling guilty and uncertain about whether she is ‘doing enough’ for her mother; thus her feelings were often conflicted. feelings reported by all clients were complex and not easily named or sorted. validating and affirming that such feelings were not unusual or uncommon in caregivers (aziz et al. 2012; durant & christian 2006; goodhead & mcdonald 2007; savage & bailey 2004; vellone et al. 2011) helped to normalise their experience and reassured them. they found such validation supportive and therapeutic. disclosure, appropriately timed and used by the author as their therapist, was also reportedly helpful to them. amy was particularly grateful during one session and confided, ‘i thought something was wrong with me […] that [i] am a bad person for having such thoughts and feelings […] i feel lighter because at last someone understands’. the author's ability to assist these clients was not only attributable to clinical skills, but also to own experience of being an informal caregiver to an elderly and visually impaired mother. a personal and intimate understanding of them was something they found comforting. interpersonal processes top ↑ aside from their own struggles, clients also reported external interpersonal impacts from significant others that affected their lives as informal caregivers. the most commonly reported experiences centred on their own family members and sometimes their relationship with the care recipient. there were reports of being ‘taken for granted’ and feeling unappreciated, which is another challenge some informal caregivers encounter (mwinituo & mill 2006; navaie-waliser et al. 2002; swanson et al. 1997). consistent with previous findings, both amy and evelyn talked about how other family members, and sometimes the care recipient, failed to understand or appreciate the daily sacrifices they underwent because of their role as caregivers. amy was painfully aware of how siblings would call and criticise or ‘give instructions’ on how she should take ‘better care’ of their mother, but appeared unwilling to visit and do same themselves. she explained how these criticisms and complaints, instead of the expected affirmation and support, left her feeling very lonely and frustrated. lack of support adds to the burden of care and feelings of depression and loneliness, which are common among informal caregivers (goodhead & mcdonald 2007; lavela & ather 2010; pinquart & sörensen 2007; savage & bailey 2004). support, especially from significant others, can be a great source of strength and solace for both the care recipient and the caregiver. with support, the task of providing care, though difficult, is less burdensome (lutgendorf & laudenslager 2009). the lack of appreciation and feelings of being taken for granted are more painful when the care recipient seems to appreciate and/or value family members other than the caregiver. both amy and evelyn talked at length about how their parents appeared to show greater appreciation, affection and tolerance for the behaviour of their other siblings when they called or visited even for a short time. informal caregivers may also face the challenge of how to deal with challenging family responses to their role. instead of support, some family members may misconstrue and misinterpret the caregiver's behaviours towards the care recipient. decisions by the caregiver, however minor and inconsequential, may be seen by siblings or extended family members as ill-intentioned attempts to usurp their positions in the family or to curry favour with the care recipient for personal gain. amy recounted many such painful experiences with absent older siblings who failed to understand her decisions about their mother's well-being. in the ghanaian cultural context, such familial conflicts with consequent feelings of alienation can be very challenging. while noting that such misunderstandings may arise from ignorance about the caregiver's daily realities, it may well be projections of siblings’ own issues and frustrations with themselves about their inability or unwillingness to do for a loved one what the caregiver has been doing. looking at it this way helped amy cope. therapy outcome as recommendations for caregivers’ self-care top ↑ by the time of termination, the following were observed and reported by clients as factors contributing to their progress. these are noted as indicators of a positive therapy outcome and are therefore recommended for the self-care of informal caregivers, as they may be applicable to persons in similar caregiving situations. awareness awareness is important to change. caregivers need to be aware of how the experience of caring for another is impacting them. mindful awareness of needs and feelings, as well as the validation of these, enables a person to name your feelings and desires without judgement. such gentle awareness provides the basis for acceptance and a conscious transformation of the experience. once the clients became more self-aware as therapy progressed, their ability to cope improved. this is a first step to self-care. meaning-making and positive reappraisal the author has learnt from own experience of being an informal caregiver, and from the stories of these women ,that sometimes the most precious gifts in life come wrapped in tattered covers. to make a positive reappraisal means to look for the ‘buried treasures’ in the ‘debris’ of the challenge of caregiving. at the time of the experience, it may be considered everything but gifts. providing care for another does not only put one in touch with your own humanness and vulnerabilities, but it can also be an uplifting experience the kind that comes from knowing that you are making a difference in another's life (kleinman 2009). the experiences of these women revealed that, even though all of them believed that it was their responsibility to care for their elderly and disabled parents, some initially reported a tinge of resentment, partly attributed to lack of support and partly to frustrations associated with the role of caregiving being extrinsically motivated added to the burden of care. as a means of self-care, positive reappraisal and meaning-making provides a nourishing oasis for a caregiver and shields from burnout because the ‘burden’ of care is seen from a more positive, and therefore more accepting, perspective. the ‘new way of seeing’ and the meaning one makes of the experience helps ameliorate and transform the difficulties. the caregiver might even be pleasantly surprised to find that there are a lot of positives in that difficult, and often underappreciated, role. evelyn, for example, admitted that it took a while before she ‘saw and admired’ her mother's courage in living with visual impairment. she explained: i watch with admiration how she takes all her medications without much complaint […] sits in the living room, day in and day out, doing the same things over and over […] and with a sense of humour and gentle appreciation for small gestures of kindness done her […] she has her down days, but i often wonder if i can live as gracefully when i am her age and so handicapped. once in this space of positivity, though the difficulties of providing care remained the same, she was better able to respond and cope. support clients who had fewer support networks seemed more stressed. it appears that the fastest road to burnout involves taking care of others without paying attention to relaxation and caring for one's own needs. having a good social network of trusted persons for emotional reliance and support is critical to a caregiver's well-being (galluzzi 1999; lutgendorf & laudenslager 2009). sharing joys and frustrations with trusted and supportive friends or family can be very uplifting. persons who make one feel safe, ‘heard’, not judged, and with whom one is free to name one's feelings and fears offer the truest gift of presence that heals. given the psychological burden of caregiving, it is essential that caregivers monitor their physical health and psychological energy to ensure the provision of quality service. time off change of environment has a renewing effect. time away from the care recipient must be done regularly without feelings of guilt. respite for caregiver is crucial for sustained energy; time away from the home is therapeutic (aziz et al. 2012). all the women longed for personal time and sometimes felt guilty and ‘selfish’ for taking time for themselves. however, time away from the care recipient renewed and improved the quality of care they could provide. exercise moderate exercise was therapeutic as well. caregiving is a chronic stressor, which can be reduced through exercise to elevate mood and improve energy level. when mercy shared that ‘my morning walks clear my mind’, the author could not agree more. it is important to include some form of exercise in one's daily routine as a caregiver. forgiveness this was something all clients had to work through and resolve. since the role of caregiving is fraught with challenges that task both the caregiver and care recipient, the art of constant forgiveness is part of self-care. it is insightful to consider that the greek words for forgiveness are translated most clearly as ‘to release or set free’ and to ‘offer a gift of grace’. therefore, to engage in the process of forgiveness is a gift in itself that is given because there is a certain powerlessness an unableness that accompanies deep hurt. to be able to forgive, it is important to be able to name one's pain in order to sever the pain nerve linking the soul to the injury, to cease to define oneself as a victim, and to free oneself from a cluster of old thoughts, ruminations, broodings and grudges. all clients had to deal with some aspect of forgiving – themselves, the care recipient, or significant others with whom they have meaningful relational ties. and once they worked through it, they seemed more peaceful for when we discover the art of forgiveness, we find new perspective. john patton (1985), a pastoral counsellor, puts it succinctly: …forgiveness is not something we do; it is something we discover. i am able to forgive when i discover that i am more like those that hurt me than unlike them; more similar than different. (p. 85) journaling since all three clients were literate, they were introduced to something the author herself had found helpful in her self-care as an informal caregiver journaling. this is the art of writing down thoughts uncensored and unedited. it provides a safe outlet for feelings and thoughts. besides trusted friends or family who provide support, journaling is helpful because not everything can be shared with even the most supportive of friends or family either for fear of being misunderstood or because the emotions and thoughts are jumbled up beyond articulation. when this happens, journaling simply writing for oneself is great catharsis! the type of journaling that was recommended to these clients, which they found helpful, is called gratitude journaling. each day, one recalls and writes a single thing for which you are grateful. caregiving is prone to depression and negativity. when the mind is thus susceptible, it is helpful to focus on the small positive things for which one can be thankful and write about those. it helps train the mind to focus on the positives that otherwise go unnoticed or are taken for granted. like toning a muscle with practice, the mind gradually focuses on the positive things instead of the negatives. this way, mental strength is fortified. trust in a higher power finally, and most importantly, trusting in a power bigger than their own problems and relying on same for assistance is important to self-care. beliefs are important to coping. the ghanaian culture is very spiritually oriented. all women alluded to beliefs in a supernatural power as their source of solace and strength. mercy shared at length that: …in caring for my mentally challenged son and my father, my greatest and most treasured lesson has been to trust god more […] and i found god to be faithful […] i know from my experience that god always comes through and that the almighty can be trusted to give strength and support, sometimes from the most unexpected places! […] many of my experiences have become ‘eye openers’ to a greater appreciation of the beautiful complexities of god's world. my conclusions are: it is better to trust in god than to trust in human beings […] because god's grace is sufficient for us […] and we can do all things because he strengthens us! again, this could not have been said better! conclusion top ↑ in the present day ghana, care for the elderly, who may also be disabled, is problematic partly because of ‘empty homesteads’ and constrained availability of family caregivers, and partly due to the time-pressured demands of the modern ghanaian lifestyle that hardly leaves any time for self or others. in addition, the cultural values of respect and care for the elderly are waning, being eroded by all kinds of external influences a situation further compounded by lack of well-established professional care centres. therefore, informal caregiving is predominantly practiced. this too is fraught with challenges, including lack of adequate financial and emotional support from significant others, as corroborated by the shared experiences of the informal caregivers reported in this study. the experiences of the three women offer some germinal insights into the beauty and complexities of informal caregiving for elderly persons with disability within the ghanaian context. the goal of this work was to bring to the fore some of the challenges and issues related to the provision of care for the elderly in the present day ghanaian society for context-specific response and intervention. notwithstanding the potential limitation of a small sample size, the importance of support and self-care for the informal caregiver in this cultural context cannot be underestimated. furthermore, the experiences of these women suggest that there is a niche for professional care facilities for the elderly, who are disabled by age-related complications, in the country. informal caregiving, by family members or hired hands, is no longer a sufficient response to the social needs of the times as far as elder care is concerned, especially in the cities. establishment of professional elder care centres by local government and non-governmental agencies would not only serve a social need, but also be a step in the right direction towards the provision of proper and adequate care for the elderly disabled in ghana. acknowledgements top ↑ competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. references top ↑ ainsworth, m.d.s., 1989, ‘attachments beyond infancy’, american psychologist 44(4), 709–716. http://dx.doi.org/10.1037//0003-066x.44.4.709, pmid: 2729745. akintola, o., 2010, ‘perceptions of rewards among volunteer caregivers of people living with aids working in faith-based organizations in south africa: a qualitative study’, journal of the international aids society, 13, 22. http://dx.doi.org/10.1186/1758-2652-13-22, 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states: a qualitative comparative study’, journal of transcultural nursing 17(1), 65–73. http://dx.doi.org/10.1177/1043659605281979 wicks, r.j., 2003, riding the dragon: 10 lessons for inner strength in challenging times, sorin books, notre dame. ziemba, r.a., 2002, ‘family health and caring for elderly parents’, michigan family review 7(1), 35–52. footnotes top ↑ 1. real names are not used. 2. cf. akintola 2010; aziz et al. 2012; gibson & houser 2007; juster & marin 2011; lahaie, earle & heymann 2013; lavela & ather 2010; mcclelland 2013; mwinituo & mill 2006; navaie-waliser et al. 2002; nurfatihah et al. 2013; okoye & asa 2011; reinhard et al. 2008; rizk, pizur-barnekow & darragh 2014; rombough, howse & bartfay 2006; savage & bailey 2004; ziemba 2002. abstract introduction research methods and design results discussion conclusion acknowledgements references appendix 1 about the author(s) elias c. nyanza department of environmental, occupational and research gis, school of public health, catholic university of health and allied sciences, mwanza, tanzania anthony kapesa department of community medicine, school of public health, catholic university of health and allied sciences, mwanza, tanzania theresia maduka department of environmental, occupational and research gis, school of public health, catholic university of health and allied sciences, mwanza, tanzania monica t. madullu department of environmental, occupational and research gis, school of public health, catholic university of health and allied sciences, mwanza, tanzania citation nyanza, e.c., kapesa, a., maduka, t. & madullu, m.t., 2023, ‘disability inclusion in malaria services in western tanzania: a rapid barrier analysis’, african journal of disability 12(0), a1270. https://doi.org/10.4102/ajod.v12i0.1270 original research disability inclusion in malaria services in western tanzania: a rapid barrier analysis elias c. nyanza, anthony kapesa, theresia maduka, monica t. madullu received: 15 june 2023; accepted: 09 oct. 2023; published: 28 nov. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: persons with disabilities generally face greater challenges in accessing healthcare and interventions compared with the general population. malaria is one of the diseases that can seriously affect individuals with disabilities, as it requires early diagnosis and prompt treatment. objective: this study explores the extent to which locally available malaria services and interventions are inclusive of persons with disabilities and identifies associated access barriers. method: a qualitative case study focusing on social, cultural and health system factors associated with the inclusion of persons with disabilities in malaria services was conducted in kigoma region, western tanzania. thematic analysis of emerging themes identified barriers affecting access to locally available malaria services and interventions. results: inclusion of persons with disabilities in planning, implementation and reporting of health issues in different malaria programmes was reported to be limited. persons with disabilities were unable to access malaria services because of different barriers such as the distance of the service provision sites, communication and information issues and a lack of financial resources. conclusion: persons with disabilities are widely excluded from malaria care provision across the entire health services paradigm, impacting access and utilisation to this vulnerable population. barriers to malaria service access among persons with disabilities were physical, attitudinal, financial and informational. contribution: the findings of this study identify that malaria intervention stakeholders need to take a holistic approach and fully involve individuals with disabilities at all levels and scope of malaria service planning and provision. keywords: malaria services; persons with disability; barriers; inclusion; vulnerable population. introduction malaria infection remains a major public health challenge to most sub-saharan african countries (world health organization [who] 2021). about 247 million cases and 619 000 deaths because of malaria were registered globally in 2021, the majority being from sub-saharan africa (who 2022b). tanzania is 1 of 11 countries with the highest burden of malaria (who 2022b). recent reports on malaria status in tanzania showed that malaria is still the leading cause of morbidity and mortality, with notifications of infection transmission resurgence in some areas (chacky et al. 2018; finda et al. 2018; insehngoma et al. 2018; mapua et al. 2022; mitchell et al. 2022; who 2021). kigoma region is one area in tanzania contributing to the observed high burden of malaria, as it has a very high transmission risk (runge et al. 2022). in tanzania, there are 3.6 million persons with disabilities, representing 8% of the population (tanzania national bureau of statistics [tnbs] 2002; who 2022a). among persons with disabilities, the majority have a physical impairment (47.9%), whereas 16.3% have intellectual impairment, and approximately 13% have multiple forms of impairment types (tnbs 2002). according to recent statistics (2023) from the comprehensive community-based rehabilitation in tanzania (ccbrt), persons with disabilities have been reported to often live in extreme poverty because of the challenge of securing a steady income amid widespread exclusion from the workplace, either through discrimination or inaccessible work environments. only 3.1% of individuals with disability in tanzania receive income from paid employment resulting in this group experiencing extreme levels of poverty (ccbrt 2023). in this context, persons with disabilities are subjected to increased vulnerabilities. the who calls for an urgent need to scale up disability inclusion in all levels of the health system and in the provision of health services (who 2021). in sub-saharan africa, persons with disabilities usually face a multitude of challenges that may hinder them from fully accessing and receiving healthcare services; such challenges include discrimination, a lack of knowledge on health issues, ineffective communication between persons with disabilities and healthcare providers, a lack of financial power, security and privacy problems (baratedi et al. 2022). in most cases, persons with disabilities are often of low social economic status and the most marginalised in society (tesemma & coetzee 2022), impeding efforts to access malaria prevention and treatment services and therefore increasing the risk of morbidity and mortality because of delayed and untimely malaria treatment (chuma, okungu & molyneux 2010; ingstad et al. 2012). one of the main barriers against malaria prevention and control in africa is inadequate information regarding means of malaria transmission, prevention and treatment among persons with disabilities (ingstad et al. 2012). factors that hinder persons with disabilities’ access to malaria services, as well as their related prevailing challenges and existing opportunities remain largely unexplored in both tanzania (rohwerder 2020) and other malaria endemic countries. in view of ensuring equitable health services to all citizens in tanzania amid resource constraints, understanding the barriers affecting access to malaria services among persons with disabilities is pivotal. tanzania is one of the countries in africa that has made a commitment to support the healthcare needs of persons living with disabilities. the tanzania disabilities act (2010) clearly states that persons with disabilities have undisputed rights to receiving and benefiting from available healthcare services, such as treatment, therapy and rehabilitation. however, implementation of such a commitment has not been well-documented. this study examined the present status of malaria service access and linked barriers among persons with disabilities in western tanzania. the study aimed at examining the experience of persons with disabilities in accessing malaria services, identifying both enabling factors and barriers for persons with disabilities to access both facility-based and community-based malaria services, and knowing the extent to which persons with disabilities are involved in planning and monitoring malaria activities. research methods and design study design, study settings and study population this was a qualitative case study focusing on social, cultural and health system factors associated with the inclusion of persons with disabilities in malaria services. a rapid qualitative case study was carried out to provide a quick understanding of the disability inclusion in malaria service provision in kigoma region, western tanzania. kigoma region borders burundi, rwanda and the democratic republic of congo (drc). the region is one of the sentinel surveillance sites under the national malaria control program, chosen because of the existence of very high malaria transmissions (chacky et al. 2018). two districts, kibondo and kakonko, with a high rate of disability (6.57% and 8.47%, respectively, versus 4.1% for the kigoma region) (tanzania disability monograph 2016) and relatively high malaria positivity rate (above 30%) were purposively selected. according to the tanzania 2020–2025 malaria national strategic plan (mnsp), malaria statistics are obtained through public and private points of care where suspect patients are registered and tested (tanzania ministry of health [moh] 2020). malaria data are then reported to the respective district and region via well-entrenched health information management systems (hmis) – a system designed for health information collection, storage, analyses and evaluation of health-related data from health facility to district, regional and national administrative levels (mboera et al. 2021). malaria data in tanzania are not reported according to impairment status. malaria data available are disaggregated by sex and age groups. key informants included district malaria managers (coordinators), health officers, members of the associations for persons with disability in the respective districts, non-governmental organisation’s (ngo’s) representatives and malaria intervention programme officers. data collection disability inclusion in malaria service provision is multidimensional. to gain a comprehensive understanding of the situation, three different qualitative approaches, namely, key informant interviews (kiis, n = 12), in-depth interviews (idis, n = 18) and focus group discussions (fdgs, n = 10) were conducted to saturation of emerging themes. we also reviewed meeting minutes from organisations of persons with disabilities where available. persons with different types of disabilities (gender and type of disability) were considered. persons with disabilities in kigoma region are registered in civil organisations based on their specific impairments. such classifications of disabilities were used to reach and recruit study participants. in selecting study participants, firstly, civil organisations involving persons with disabilities were identified. secondly, to ensure representation of all impairment, a list of individuals with disabilities was used to select participants with the help of community development and social welfare officers. thirdly, respondent-driven sampling was also deployed to maximise heterogeneity of the study participants. each of the kiis, idis and fgds took at least 30–45 min. swahili language was used during the interviews because it is a common language to most persons with disability and majority of the tanzania population. all interviews were tape-recorded, transcribed verbatim and later translated from swahili to english and then back to swahili to ensure a common understanding. data obtained at every interview were used to guide coding rather than imposing a coding scheme. each interview was moderated by two people experienced in qualitative research and a research assistant taking notes to enhance transcriptions accuracy of the recorded information. for kiis, the district malaria coordinators, district social welfare officers and district health officers, ngo leaders and malaria programme officers were purposely selected and recruited to participate. moreover, some health officers and healthcare workers at the ward level were also purposely selected to give their views on the subject in question. document review meeting proceedings documented from selected village health committees, ward development committees and meetings from organisations of persons with disabilities at the district level were requested and reviewed where applicable, with the aim of reviewing any documentation related to malaria interventions and/or services among persons with disabilities. moreover, the council comprehensive health plans (cchps) and malaria morbidity profile for both districts were also reviewed. ethical considerations the study protocol to conduct this study was reviewed and approved by the joint research and ethics review committee which comprises of two institutions, namely catholic university of health and allied sciences and bugando medical centre research and ethics review committee (crec/622/2022). permission to conduct this study was also granted from respective authorities in kigoma region and kibondo and kakonko districts. permission from respective persons with disabilities civil society organisations was also granted. all study respondents were informed of the purpose of the rapid qualitative survey, and written informed consent was provided via signature or thumb print. in instances where persons with disabilities were unable to read and write, the consent form was read to them, and they were allowed to ask questions. an impartial witness from the local community was present during the informed consent process to ensure that persons with disabilities were not coerced to participate and that their participation is completely voluntary. persons with disabilities who were younger than 18 years of age provided assent, and their parents or guardians provided informed consent. the witness also signed the informed consent form and the assent form. special codes instead of names were used as identification codes during interviews. data analysis of key informant, in-depth interviews and focused group discussions audio files from kii, idi and fdgs were transcribed verbatim and later translated into english. to verify and double-check the translated documents’ consistency, back translation was performed. thematic content analysis was used to analyse the translated scripts (marks & yardley 2004). the following procedure was followed: data organisation; to facilitate comprehension of concepts, information from kiis, idis and fgds transcripts were arranged under each topic and specific question separately to enable picking up concepts. finding and organising concepts; identification of recurring concepts, and patterns was undertaken. creating codes; coding was carried out and allocated to categories inductively; two people coded separately. informants interviews, in-depth interviews, and focus group discussions are presented using special coding keys (see appendix 1). to minimise inter coder variability, codes with a good degree of agreement were used. building themes from available data: different concepts were collapsed into one theme. the arising themes were described with their relationships. of the six organisations of persons with disabilities contacted, two did not have meeting minutes, three organisations shared meeting minutes, but no issues regarding malaria services and/or interventions in any form were documented. results demographic characteristics of the study participants four fgds involving persons with disabilities, 20 kiis (which included the district medical officers, social welfare officers, malaria coordinators, leaders for persons with disabilities, healthcare workers, ngos’ leaders and programme officers), and 41 idis were conducted in kakonko and kibondo. most of the persons with disabilities (n = 21, 47.7%) had either never gone to school or did not complete primary school. the most prevalent disabilities among those who were recruited for the study included deafness, locomotors, albinism, autism, blindness and mental illness as detailed in table 1. categorisation of the key informants who participated in the current study are detailed in table 2. table 1: demographic characteristics of the persons with disabilities (n = 44) who participated in the rapid qualitative survey. table 2: key informants involved with persons with disabilities (n = 20) who participated in the rapid qualitative survey. identified themes in a rapid disability inclusion barrier analysis survey on malaria services in kigoma thematic content analysis of the interview data revealed four main themes and several sub-themes as presented in box 1 and discussed thereafter based on the objectives of the study. box 1: emergent themes from thematic content analysis. awareness, experiences and enabling factors among persons with disabilities in accessing malaria services the respondents in kibondo and kakonko districts had different experiences in accessing malaria prevention, promotion and curative services. most of the respondents said there was a special consideration for the elderly, children and pregnant women, while persons with disabilities were left aside. one of the respondents with disability from the idi mentioned: ‘i’ve never seen a person with disabilities being given a special priority contrary to the old people. in most cases old people have been given special priority in receiving treatment.’ (idi37, 18yrs, male) this information is supported by one of the key informants who added ‘… those services are provided in general, there is no specific or special consideration for persons with disabilities or outreach services to reach those with disabilities’ (kii30, 37yrs, male): ‘we have heard the malaria treatment plan for all in the media, but it is not implemented because it aims to treat children and pregnant women and not those with disabilities.’ (fgd20, 30yrs, female) it also emerged that it was difficult for persons with disabilities to access malaria services because they were not aware of what kind of malaria services were available in their communities or nearby healthcare facilities. this was supported by one of the respondents: ‘the information we get from the radio and newspapers is that malaria is caused by the presence of water in the pools … but when we become sick, we do not know where to run to because at the hospital we don’t get proper care thus we go to the pharmacy to borrow some medication.’ (fgd20, 48yrs, male) regarding the distribution of nets, most of the respondents said that it was difficult to get insecticide-treated nets (itns) if you do not have children at school or pregnant wife: ‘in terms of spraying, they do not discriminate, if you can take your belonging and all individuals around outside the house, but in terms of mosquito nets, clinics provide services to pregnant mothers and school children only.’ (idi41, 42yrs, male) another one added that: ‘we rely on primary school children to be given the bed nets that we use, but as persons with disabilities, i have never received one.’ (idi56, 28yrs, female) however, even though bed nets are distributed, some persons with disabilities have different beliefs and perception about them: ‘… some people because they think that maybe bed net reduces male potency, sometimes people have different interpretations, especially when people give interpretations to those who do not have knowledge of medicine and prevention against malaria. they do not investigate, because people have already used mosquito nets so we can use them, but we will not be able to have a case of this malaria even though malaria exists.’ (idi2, 19yrs, female) others said the nets brought bed bugs and other discomforts: ‘they bring bedbugs, there is a certain period [laughter] president kikwete gave aid in nets, as a result a lot of people were attacked by bedbugs, many burned them, and they were afraid to use those nets.’ (fgd23, 28yrs, female) others added: ‘if it is still new, you sneeze frequently, i think they are affecting because you are sneezing frequently until you wash it, and the medicine is reduced, you must wash it before you use it.’ (id112, 45yrs, female) ‘i sweat a lot sometimes when i use bed net.’ (idi15, 63yrs, female) however, others had positive opinions on mosquito nets and encouraged that people should be educated, as one said: ‘…. so a student who grew up in kigoma who didn’t have lice or maggots, was not a student, but after sometimes we realized what cleanliness means until today … i think it is not true that bed nets bring bed bugs people should be educated about cleanliness.’ (fgd23, 30yrs, male) respondents understood that in all health institutions, including dispensaries, all malaria services are delivered free of charge, which includes testing, diagnosis and treatment. all medication of malaria should be given free to all citizens regardless of age groups; however, because of scarcity of medication, individuals with malaria must buy malaria drugs in the nearby pharmacy. as one said: ‘… the doctor will prescribe it for me, and i will take it to the store. at the medicine window, i will find that this medicine is not there, i go and buy it. that’s why i think it’s better to go to the street and buy at the pharmacy directly.’ (idi16, 63yrs, female) another one added: ‘it is better to go to the pharmacy because when you arrive at the hospital, and there is no medicine, you find that you have wasted the time and costs of coming to the hospital, so it’s better to buy and take it without testing.’ (idi12, 45yrs, female) it was also established that persons with disabilities get proper care most of the time. they do get exemption for treatment and sometimes they are given priority in service delivery; however, there is no special window – a dedicated place for special groups such as persons with disabilities when accessing malaria services – in a particular health facility; therefore, they are sometimes asked to queue at the window of the older people, to ease delivery of services for them: ‘persons with disabilities have the opportunity to be treated, when they show up, we usually treat them with exception … they get an opportunity because all their treatment from tests to medicine, is free but they are also given priority to be treated first if they are in a queue, but having a window for persons with disabilities, is difficult so we connect them to the window for the elderly due to shortage of rooms.’ (kii4, 38yrs, male) some of the health providers were aware that persons with disabilities are a vulnerable group who need special consideration as one mentioned: ‘persons with disabilities are my customers because they are a special group. an individual with disabilities is a human being like any other human beings because he gets the same rights as anyone else and what we are looking at is that one gets the right and safe services because he should not be isolated due to his or her disability.’ (kii40, 33yrs, male) another one added that: ‘the majority of those who do not have health insurance are given waivers [social welfare] regardless of age, whether young or old.’ (kii21, 38yrs, female) some persons with disabilities acknowledged to be given special consideration as one person with visual impairment mentioned: ‘opportunities, sometimes [probably] you are treated free, or may be when you arrive at the health centres you will be the first to be treated, you don’t que, when we go to the hospital, we have been given priorities of being the first ones to receive treatment.’ (idi38, 26yrs, male) another enabling factor for persons with disabilities is the presence of relatives or family members who help them to access malaria services. one respondent said that ‘my husband is involved when it comes to paying for my treatment’ (idi53, 38yrs, female): ‘when my children find work, such as fetching water or doing domestic work, they help me buy medicine.’ (idi13, 45yrs, female) persons with disabilities can directly receive information about malaria services through radio, neighbours or campaigns as one said in a group discussion: ‘on the availability of malaria information for us, people who live near the town can hear the council cars pass while announcing, but for persons with disabilities who live in the villages, they don’t get any information because even the cars can’t get there, they don’t have a radio and they don’t read newspapers. the government or health workers should reach out to those in the villages and provide health education.’ (fgd20, 30yrs, female) ‘there are neighbours who always come and tell us that there are mosquito nets today, they are bringing medicine and they are coming to spray, so get prepared.’ (idi18, 82yrs, female) also, the presence of sign language teachers helps individuals with hearing disability: ‘there is a school that teaches them [the school for the deaf that exists in kanyamahela] many things including health education … most people send them there and the care givers are also taught practical sign languages.’ (kii21, 38yrs, female) sometimes persons with disabilities are given opportunities to perform leadership roles and community engagement activities as one malaria coordinator from kibondo said: ‘they become very less suspicious and build confidence in the sense that the group involves community health workers [chws] – lay members of the community who work either as volunteers in association with the local health care system against malaria … we are still looking for the best way to increase their participation through other means, meaning that even those who come in groups as chw who have disabilities, we are getting their opinion as well.’ (kii31, 41yrs, male) barriers that hinder persons with disabilities to access malaria services sub-theme: physical barriers physical barriers are a major factor that hinder accessibility of malaria services, as some health facilities are built far away from people’s residences; one of the respondents said: ‘the obstacles i see is because there are some persons with disabilities who cannot walk, now you find that they come to hear that there is a free service provided to persons with disabilities, so the biggest problem is getting fast transport.’ (idi41, 42yrs, male) it was also added that: ‘i can spend about 40 minutes on foot in terms of transportation like 10 minutes by motorcycle … in the rural areas the fare is 2000 but in the district the fare is 5000 to 10000 shillings.’ (fgd20, 28yrs, female) also, physical barriers can have an impact on indoor residual spraying as indoor residual spraying (irs) safety officer said: ‘irs is a poisonous exercise, so we can’t spray in the presence of people or things, they must take all things out. sometimes we encounter a challenge, a person with a disability or a patient is unable to give or take out their belongings, we fail to execute the exercise, we must continue to other premises.’ (kii52, 35yrs, male) it was also found out that persons with disabilities may not get emergency treatment in case of a sudden illness because of infrastructure as a nurse from kibondo said: ‘when individuals with disability are at home, help is not enough, for example, an individual with disability who use tri-cycles until they find people to push them, so if he does not get help, it is a challenge, it means that even if he is caught by a sudden illness, he cannot rush to hospital quickly due to his disability.’ (kii21, 38yrs, female) sub-theme: communication barriers in the kiis, sign language emerged as one of the communication barriers among persons with hearing impairments versus healthcare providers during malaria services provision. for instance, healthcare providers face language barriers when it comes to communicating, ‘those who have some disabilities such as those unable to speak … are challenging to treat because we cannot understand each other’s language’ (kii3, 30yrs, male). it also emerged that sign language is taught but many people do not go to special school to learn it. this poses a challenge in accessing healthcare services even in the presence of sign language professionals as evidenced by one of the professionals: ‘the challenge is communication for the deaf in the signs. there are signs that are standard, tanzania sign language, and there are signs that are normal local. now there is a big barrier between tanzania sign language and normal sign language because they vary from person to person, for example you find a certain sign that he means, you don’t understand it and the larger society still has no understanding of sign language, so you find that when these children with special needs want to express themselves, it becomes a challenge to be understood in the offices or institutions they go to and sometimes you may be called a professional should also do sign language interpretation, but you also find that the person has signs that you are not familiar with. so, sign language develops as a language. it needs time to stay with the community, especially for people who did not come to our school where tanzania sign language is taught.’ (fgd6, 45yrs, male) other participants admitted that they are not able to get any health-related information because of their disabilities, as one said, ‘i don’t get any information because first of all i can’t hear, so maybe there would be leaflets for those of us who can’t hear’ (fgd23, 37yrs, male). sub-theme: financial barrier persons with disabilities are more likely to experience poverty, which poses financial barriers to accessing health services; one of the malaria coordinators mentioned: ‘they do not have the ability to do economic work like other people, and if we look at the second group, those with mental disorders, those with this type of disability are at greater risk because most of them will be born normally, there is none, they need more attention but we still don’t have a specific program for them.’ (kii31, 41yrs, male) most of the respondents admitted that they cannot afford health services because they have a disability and so they are more reliant on help and support from others in most aspects of life. as explained by one respondent who said: ‘he can’t afford it because he doesn’t do any work, he stays at home.’ (idi17, 68yrs, female) another participant with disability added that: ‘we individuals with disability do not have the income, so when we get sick at night, getting transportation becomes a problem … a motorcycle that will bring you to the health centre, costs 15000.00 and a car cost 20000.00 now and for us as individuals with disability cannot afford. i was asking you to at least help us find a way to get transport when we are being taken to the hospital or clinic.’ (fgd20, 48yrs, male) others stressed that services are expensive and went further to ask the government to provide special insurance for them: ‘it is difficult for us persons with disabilities to pay for the services, because most of us do not have special jobs, so we would like the government to see how it can help us.’ (fgd7, 40yrs, male) ‘when you go to the hospital without health insurance for the treatment of malaria and other diseases, if you go for tests, it is expensive because typhoid costs 6000.00 shillings, now if you don’t have enough money, you will only have to take one test for example malaria, then that becomes a problem, we ask you to help us.’ (fgd20, 39yrs, male) ‘we don’t have insurance specific for persons with disabilities, so when we get there, it becomes difficult to get services, so we were asking the government to set aside a window for persons with disabilities like the elderly and given health cards.’ (fgd20, 48yrs, male) stigmatisation to persons with disabilities in accessing malaria services some respondents reported facing some form of stigmatisation when seeking healthcare in health facilities and in the society. some who had faced stigma added that not all people show stigma to the persons with disabilities, as he said: ‘except to be looked at badly, this has happened to me, for example, one person told me that he was serving others, he left me there and his colleague came and told him that why have you not taken care of him and you have served others, you are doing wrong, so he took me and went to serve me.’ (idi56, 28yrs, female) leaders of organisations pointed out that some persons with disabilities are left behind because some members of the society view them as a burden and hide them: ‘some people see individuals with disability as a burden, so they don’t appreciate them very much. we have been witnessing and hearing on various media that some individuals with disability have been found hidden, this is a challenge to them, and it can easily lead to lack of services. that’s why i advised the community to see persons with disabilities as people like them, people like everyone else and they should be able to get the services they deserve without discrimination and without stigmatizing them … i think the biggest thing is to be seen as a burden in that society … the basic thing is that people can be educated to remove the concept of discriminating persons with disabilities.’ (kii4, 38yrs, male) persons with disabilities experience delays in being taken to the hospital unless they are severely unwell as one clinician said: ‘the challenges persons with disabilities face is that a person may have all the symptoms of malaria, but he or she is not brought to the hospital on time … until the patient is completely overwhelmed and this is because most caregivers spend most of their time in the fields.’ (kii3, 30yrs, male) another malaria coordinator said: ‘the public’s understanding is limited so the support they get when they get sick is small, that’s why until they get really sick, they are brought to health care centres.’ (kii30, 37yrs, male) health provider’s attitude and behaviour can also be a major barrier for persons with disability to access malaria services. some respondents reported that they faced some bad attitudes from health providers when they went for malaria treatment as no special services was offered to them despite their disabilities: ‘when you get to the hospital, if you don’t have insurance, they tell you to bring 3 thousand shillings and if you don’t have the 3 thousand shillings you can leave without even getting medicine.’ (fgd7, 49yrs, female) ‘at other times you may arrive, and they start insulting you and if you get there i give up, other times you find that he is angry, he pretends to be busy and doing his work and when he decides, he comes to serve them and he does that for all persons with disabilities and those without disabilities.’ (idi8, 35yrs, female) it was also evident that there was a lack of inclusion and/or involvement of persons with disabilities in planning and monitoring, implementation and provision of malaria services in the surveyed districts. also not knowing the exact number of persons with disabilities makes planning and allocation of resources difficult. it was also suggested that the government health sector budget should be increased to avoid the tendency of persons with disabilities to buy medicine, as the district medical officer said: ‘it is difficult to know the number of persons with disabilities, this makes planning difficult because their number is not very clear, so your plan can be less or beyond the target level. but also knowing the different types of disabilities that people have becomes challenging, so it can cause a problem in planning what should be done to ensure that the service includes people with various disabilities during the installation, implementation and monitoring, i think there should be a good plan on how to identify persons with disabilities in different areas, maybe starting from the neighbourhood level upward, with cooperation from different offices like social welfare, these will have their number and the type of disability they have so that it can be easy to make plans to help them.’ (kii4, 38yrs, male) another respondent insisted, ‘i would ask that we should be involved in malaria services provision’ (idi41, 42yrs, male). the review of the cchp – a guideline that entails a consolidation of council health management team and health facility plans so as to maintain and improve the health provision of promotive, preventive, curative and rehabilitative health and social welfare services and make it accessible, affordable, effective, equitable and of good quality (cchp 2011) – found the existence of various community-based malaria interventions and services including malaria test and treat, mosquito net mass distribution and community awareness campaigns. another activity was the implementation of the indoor residual spray programme in kibondo district. unfortunately, none of the two councils had a special programme to address malaria services and interventions that was dedicated to persons with disabilities. like many other programmes, the focus was mainly on pregnant mothers and children under the age of 5 years. disability inclusion in existing malaria-related programmes existence of relief services, leaders, stakeholders and programmes in kibondo and kakonko districts such as tanzania social action fund (tasaf), help age international and catholic relief services (crs) has been involved with persons with disabilities and even helped a lot of persons with disabilities in mitigating some of the health challenges as one respondent said: ‘at the moment we have two organisations that are helping us, the first is abt associate through usaid who are doing the irs exercise for us, the second is msf through the nduta camp with whom we also collaborate on bio-larviciding although they are concentrated in the areas surrounding the refugee camp.’ (kii31, 41yrs, male) ‘i also link institutions including health care centres, but there is also a national malaria program, which is also a government institution, and there is a pmi vector link, they were linking us to the crs.’ (kii30, 37yrs, male) however, there are few special programmes for malaria that are designated to help persons with disabilities as most of the respondents said and observed: ‘the government should strive to improve the infrastructure throughout the country, district hospitals should have a window for persons with special needs and there should be expert doctors who have studied units for the blind, and deaf persons. those with special needs need to be conveyed the message so that they can help them so that their health can improve, the government should also create infrastructure to enable these persons with special needs who are unable to walk from where they reached to find a place to live, but i believe that the government allocates the budget properly.’ (fgd23, 41yrs, male) one of the participants added, ‘i think the government should help us on the provision of appropriate health services, especially people like us with children with disabilities, we have countless challenges’. (idi27, 38yrs, female). it was observed that there were various malaria-related policies at the district level; however, none were centred on persons with disabilities; one informant explained: ‘the government should put efforts on knowing that there are special groups of persons with disabilities who need access to services in the areas where they live. if the government puts pressure on it, i think those barriers may disappear and we may find ourselves not being discriminated against.’ (fgd7, 42yrs, female) ‘we rely on the children of the primary school to be given the bed nets that we use, but as persons with disabilities, we have never received mosquito nets.’ (idi56, 26yrs, female) ‘i would like the government to help us with the provision of nets and spraying, that is, for example, maybe there should be nets distributed special for us persons with disabilities.’ (idi56, 26yrs, female) a majority of persons with disabilities suggested that the system should consider them in terms of treatment and services provision, like all other groups through providing them with health insurance: ‘we don’t have health insurance for persons with disabilities, so when we get there, it becomes difficult to get services, so we were asking the government to set aside a window for persons with disabilities like the elderly and health cards and we should be given.’ (fgd20, 48yrs, male) it was concluded that the district councils were ready to work and cooperate with the government and stakeholders in the fight against malaria as one said: ‘kibondo is the district council itself is in the front line supporting the ministry of health which brings us the tools, but we have had the msf organization, they are participating in the bio-larviciding campaign, for the neighbouring areas, we have been collaborating with tanzania vector control agency which is an organization that deals with statistics and research against malaria but we were also collaborating with nimri to research the potential of mosquito nets and drugs and the type of mosquitoes we have and lastly we were collaborating with usaid people to distribute mosquito nets through lion net.’ (kii31. 41yrs, male) additionally, education is one of the adopted means to fight malaria in the district as one healthcare provider explained: ‘… along with that we provide education for them regarding problems that a person may experience if they suffer from malaria regularly, such as anaemia and splenomegaly. we think this will create fear among them and they will take initiatives to protect themselves from malaria. even at home they should check if their houses are surrounded by bushes, they should try to clean the house as well and sleep in a mosquito net, and if the mother is pregnant, she should make sure that she follows the procedure of taking sp medicines so that she cannot give birth to a child with malaria.’ (kii21, 38yrs, female) persons with disabilities are a special group and see themselves as more vulnerable and need special attention. it emerged that the use of community health workers (chws) was vital as they are familiar with and have built trust with such an individual and sometimes there are chws who are among the persons with disabilities. one of the informants mentioned, ‘they become less suspicious and build confidence in the sense that the group involves chw who are working with the community organization against malaria …’ (kii31, 41yrs, male). during data collection, enumerators learned that organisations of persons with disabilities have a networking system that enhances access to those in remote areas. discussion the alma-ata declaration (who 1978) proclaimed primary healthcare as the means for achieving ‘health for all’, also the universal health coverage (who 2022b) with the stance that all people have access to the full range of quality health services they need, when and where they need them, without financial hardships. this declaration has influenced the reorganisation of the health systems in all countries including tanzania. national policies are based on effective, cost-efficient primary healthcare strategies that entail universal health coverage, patient-centred approaches and demand-driven health policies. persons with disabilities, like any other individuals, have the right to good health and equality in access to malaria health services (who policy on disability 2021a). therefore, it is important to understand their existing barriers to health services to identify approaches to improve service access. this study revealed several enabling factors and barriers for persons with disabilities to access both facility-based and community-based malaria services. according to the tanzanian disability survey (2008), it is estimated that more than 20% of persons with disabilities encounter some barriers when accessing health services including malaria services. furthermore, there is no full involvement of persons with disabilities in planning, implementation and reporting health issues in different programmes (who 2022b). as respondents observed, multiple barriers exist for persons with disability to access malaria services. these range from a lack of information to the actual cost of services, increasing health disparities among persons with disabilities: physical barriers that prevent access for persons with disabilities to health clinics and hospitals; informational barriers that prevent access for persons with disabilities to health literacy and information brochures and leaflets on health promotion, prevention and protection; attitudinal barriers, which give rise to discrimination that can have severe implications for the rights of persons with disabilities. persons with disabilities share different experiences while in need or when seeking malaria services. these experiences are unique and peculiar to each individual person. the degree of experience may differ depending on the different types and needs of everyone with disability. our findings that such individuals are not given service accommodations could be a demotivation in seeking healthcare among persons with disabilities. for instance, there were no dedicated places for persons with disabilities while accessing healthcare services, unlike older people. persons with disabilities struggle to reach such services taking them longer as compared with a normal person, yet they have to look for their day-to-day basic needs; this is supported by data from sub-sahara, which indicate that almost all national malaria control programmes in africa give little or no special attention to this population (rohwerder 2020). furthermore, studies in east africa have shown that persons with disability are less likely to be covered by general public health interventions (schenk et al. 2020) with reports from tanzania revealing high exclusion of persons with disabilities from accessing healthcare services (chuma et al. 2010). the hardship may range from a lack of ramps, presence of steep ramps to rough pavements that hinder their movements to and around health facilities surroundings freely and independently. other risks include inaccessible and unclean hospital toilets and non-adjustable hospital beds, to mention a few (who 2022b). we recommend efforts to integrate persons with disabilities within the special window for older people. on the one hand, without services tailored to their specific accessibility needs, persons with disabilities can be predisposed to higher chances of developing complications related to malaria infection as well as heightening the risk of mortality (chuma et al. 2010; ingstad et al. 2012; torres et al. 2019). on the other hand, the western part of tanzania has high mobility influx of people in search for gold using rudimentary methods with poor housing – artisanal and small-scale gold mining (asgm). areas with asgm activities are reported to lack malaria prevention as well as treatment services making such economic activities a major driver in the increase in malaria to the general population (castro & peterka 2023). landier et al. (2016) established the role and importance of malaria diagnosis in the efforts of treatment and elimination, where individuals who had limited or no access to diagnosis had poor prognosis and sometimes succumbed to death from the disease. the lagging of malaria services among persons with disabilities is multidimensional, hence community engagement is vital. community engagement is grounded in the principles of fairness, justice, empowerment, participation and self-determination while enhancing adequate community protection especially among the marginalised such as persons with disabilities (eversole 2010). implementation of community-based malaria programme targeting persons with disabilities, e.g. malaria test and treat programmes, yearly long-lasting insecticidal nets (llins) distribution, household irs and awareness raising campaigns, is therefore recommended in these communities. the findings of this study also indicate a lack of sign language and special communication assistance to persons with hearing impairment as well as those with sight impairment (baratedi et al. 2022) across all the malaria scope of services limiting the type and kind of services they get. it emerged that medical staff, for instance, are rarely trained and/or have such training or expertise regarding sign language for people with hearing challenges. in addition, a lack of information on malaria services is one of the reported barriers to access to services for persons with disabilities. there were neither government nor community efforts that were evident in the surveyed districts in ensuring persons with disabilities receive accessible health information. this study also indicates that affording to have and operate a means of information receiving devices such as radios and tvs to access information was a challenge to some of the persons with disabilities. communication barriers were also reported when persons with disabilities visit health facilities trying to access malaria services. there are reports that persons with disabilities who managed to reach health facilities could also be inclined to seek medication at a nearby private drug store or pharmacy as medication is frequently unavailable in most of the rural health facilities (palmer et al. 2015; torres et al. 2019), and persons with disabilities can hardly afford such expenses or purchases (baratedi et al. 2022). it must be understood that a large number of persons with disabilities lacking financial resources coupled with a lack of privilege to such services puts malaria control efforts at risk (palmer et al. 2015; torres et al. 2019). for instance, because most persons with disabilities have limited financial resources, they therefore resort towards the practice of self-medication and over-the-counter drug acquisition (palmer et al. 2015; torres et al. 2019). this could be contributing to drug resistance and/or escalating the public health challenges against drug resistance. our speculations are supported by findings reported elsewhere in tanzania where self-medication and over-the-counter malaria medication have been reported as one of the reasons for potential drug resistance that could be currently affecting the entire community or would potentially affect such communities in the near future (baratedi et al. 2022; palmer et al. 2015; torres et al. 2019). with limited services and lack of privileges for persons with disabilities in accessing malaria services, possessing health insurance seemed to be important as an enabling factor. study participants reckon that having health insurance allows them to access health services. already tanzania is finalising a legislation for health insurance for all. however, the cost for an individual is expected to be tzs 84 000.00 (equivalent to $35.00 usd) or tzs 340 000.00 (equivalent to $142.00 usd) for a family of six people. this remains to be a major barrier as most persons with disabilities live in extreme poverty and have failed to secure a community health fund card (torres et al. 2019), which is reported to be worthy of tzs 10 000.00 per year in rural areas. the tanzania persons with disabilities act (2010) commits the government to ensure access to health services including malaria services for all. in 2009, tanzania government ratified the 2006 united nations convention on the rights of persons with disabilities (uncrpd). article 25 of the uncrpd urges states parties to: [r]ecognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination based on disability. states parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. (uncrpd 2006:18) furthermore, the tanzania disability act (2010) provides similar provisions. even though the implementation of this commitment has not been fully evaluated, it provides an opportunity and an initial platform for stakeholders to push the government agenda to enhance access to malaria services among persons with disabilities, especially in areas with high malaria resurgence such as kigoma in western tanzania. from a policy and legal point of view, the government of tanzania through the ministry of health has shown great commitment towards ensuring access to healthcare to persons with disabilities. the government has recognised and included the specific needs of persons with disabilities in policies and legal frameworks. the health sector strategic plan v states that the government will ensure availability of essential primary healthcare services with acceptable quality standards throughout the country with respect to geographical, population, gender, disability and burden of disease. however, the great challenge remains on making its health programmes more inclusive to persons with disabilities by mainstreaming their needs. missing healthcare because of inability to afford it is another reported challenge. most participants acknowledged not having sought care because of a lack of financial resources as a result of the affordability of the services and transport expenses to reach such facilities. distance between home and the facility is among the challenges reported not only by persons with disabilities but also other people. however, because of their conditions, persons with disabilities are highly restricted from accessing health services as compared with other people. this coupled with financial inability to afford transportation costs has also been reported in kenya, which neighbours tanzania, as obstacles limiting accessibility of malaria health services (otambo et al. 2023). in a recent report by otambo et al. (2023), approximately 76.4% of the malaria febrile residents had delayed treatment because of their inability to afford malaria healthcare services. this, among other things, calls for immediate action aimed at resolving this financial barrier to encourage and enable persons with disabilities to access and afford malaria healthcare services. social and communal networks and non-governmental organisations emerged as important groups in supporting persons with disabilities to access health services, as coping strategies, and support for persons with disabilities. however, government support for persons with disabilities was found to be limited. most of the local support from the government is limited to the elderly, pregnant women and young children. some participants reported to have received assistance from their nearby relatives. insecticide-treated mosquito nets, for instance, are distributed in schools (i.e. you get one if you have a school going child), given to pregnant women (you get one if you are married) and given to younger children below the age of 5 years (you get one if you have an under-five child); in this regard, persons with disability are not included in the itns distribution programme unless one is pregnant and/or has a child going to school. there is a need to push the agenda in malaria intervention programmes to consider including persons with disabilities as one of the special groups benefiting from free itns distributions. one of the limitations to this study is failure to assess the uptake and use of the existing malaria services such as itns among persons with disabilities. a follow-up study should examine the uptake and use of malaria services among persons with disabilities. healthcare worker’s attitude and behaviour towards persons with disabilities was different and inimitable to each participant. in some areas, negative attitude of healthcare workers towards persons with disability emerged in some of the interviews and discussions. we could not validate such contentions, as an observation study was needed. it is nevertheless important to sensitise healthcare workers regarding the rights of persons with disabilities and how they should be treated in accessing not only malaria services but also other health-related services. generally, the findings of this rapid survey are supported by a previous tanzania disability survey (2008), conducted in the southern part of tanzania (in iringa region) that revealed five major challenges among persons with disabilities regarding access to health services in general, which included medical costs, inadequate medicine, communication barriers and inaccessible infrastructure. persons with disabilities in the western part of tanzania report disparities in accessing malaria services. the 2022 who global report on health equity for persons with disabilities acknowledges such disparities in health services among persons with disabilities that could be potentiating poor health outcomes among such individuals. in this study, we did not find any evidence for persons with disabilities being involved in planning and monitoring for malaria health services in the districts surveyed. the who calls for agent initiatives to address such health inequities among persons with disabilities to ensure the global sustainable development goals and global health priorities are attained (who 2022b). based on the current findings and existing evidence from tanzania, the following recommendations should be considered in minimising existing barriers and leveraging opportunities. firstly, from tanzania’s policy and legal point of view, provide an opportunity for inclusion of persons with disabilities in accessing malaria services in the country. we therefore recommend policy advocacy on inclusion of persons with disabilities as a priority population by the country malaria control programmes, and reinforcing inclusive strategies and actions to benefit persons with disabilities in need of malaria services. secondly, the attitudinal barriers at the health facilities should also be addressed. there is a need for provision of training of health workers on disability etiquette, the rights of persons with disabilities, communication tips and other accommodations to improve access to malaria services among persons with disabilities. thirdly, the special window for provision of services for older persons can expand the scope to include services for persons with disabilities; this can also be integrated in the district health information system (dhs2) to provide the number and health issues involving persons with disabilities that is currently lacking (braa & sahay 2017). fourthly, regarding experiences on malaria services among persons with disabilities, there is a need for malaria awareness campaigns on transmission, symptoms and signs and health-seeking behaviours to be implemented by using community health workers and peers’ educators who themselves have disabilities as part of the intervention initiatives. fifthly, policies supporting special groups such as school-aged children, under-five children and pregnant women are provided with free itns. it is on this basis that persons with disabilities can be included among the beneficiaries for itns through their existing networks and social groups. sixthly, sensitisation of districts community development and social welfare departments on provision of payment waiver for the persons with disabilities regarding treatment payment for persons with disabilities. seventhly, as there was no agenda for reporting malaria issues in the minutes reviewed, there is a need to initiate capacity-building programmes for civil society organisations for persons with disabilities to enable them to include malaria issues in their meetings. lastly, there is a need to strengthen the networks of persons with disabilities at the district level to improve their specific health problem-solving skills and to be able to reach those at the very low levels and harmonise the specific services provided in urban areas. conclusion widespread exclusion of persons with disabilities in malaria services provision exists across the entire health services paradigm affecting access and utilisation to such a vulnerable group. information about malaria services to persons with disabilities was evidenced to be minimal and/or lacking. involvement of persons with disabilities in planning, implementing and reporting health issues in relation to malaria in different programmes has been lagging. generally, barriers to malaria service access included physical, attitudinal, financial and informational. to ensure equitable malaria services and interventions, the barriers should be minimised by deliberate efforts tailored to persons with disabilities during planning and implementation of health services at the health facility and community level. opportunity for improving the situation in policy and legal aspects, use of chws and civil society organisations for persons with disabilities exist. the existing opportunities for inclusion require coordinated innovative approaches such as the use of community ambassadors for persons with disabilities as well as strengthening community networks among individuals with disabilities. acknowledgements competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions e.c.n. contributed to the study conceptualisation and design, supervised the data collection, analysed the data, interpreted the results and helped in writing the manuscript. a.k. contributed to the study design, data collection and transcription, and participated in the data analysis. t.m. contributed to the study design, script transcription, interpretation of the findings and assisted in writing the manuscript. m.t.m. assisted with script transcription, interpretation of the findings and in writing the manuscript. all authors read and approved the final draft of the manuscript. funding information this study was partly funded by the catholic relief services and the catholic university of health and allied sciences as part of their socio-corporate responsibilities to the communities. data availability de-identified data and detailed information regarding the participants are available upon request. disclaimer opinions and views in this report do not necessarily reflect the views of the institutions with which the authors are affiliated. references baratedi, w.m., tshiamo, w.b., mokotedi, m.t., khutjwe, j.v., mamalelala, t.t. & sewane, e.b., 2022, ‘experiences of accessing healthcare services by people with hearing loss/impairment (deaf) in sub-saharan africa: an integrative review’, journal of nursing scholarship 54(1), 46–55. https://doi.org/10.1111/jnu.12707 braa, j. & sahay, s., 2017, ‘the dhis2 open source software platform: evolution over time and space’, in l.f. celi 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(who), 2022b, universal health coverage, viewed march 2023, from n.d., https://www.who.int/news-room/fact-sheets/detail/universal-health-coverage-(uhc). appendix 1 article information author: brian watermeyer1 affiliation: 1department of psychology, stellenbosch university, south africa correspondence to: brian watermeyer postal address: 11 mulvihal road, rondebosch 7700, cape town, south africa dates: received: 02 july 2014 accepted: 14 sept. 2014 published: 21 nov. 2014 how to cite this article: watermeyer, b., 2014, ‘freedom to read: a personal account of the “book famine”’, african journal of disability 3(1), art. #144, 6 pages. http://dx.doi.org/10.4102/ ajod.v3i1.144 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. freedom to read: a personal account of the ‘book famine’ in this original research... open access • abstract • introduction • reading as freedom • deprivation is personal • scenes from my story of reading • conclusion • acknowledgements    • competing interests • references abstract top ↑ even in the digital age, access to literature and other information for people with print impairments remains extremely poor, especially in the developing world. reading access holds cascading implications for education, economic empowerment, social participation and self-worth. in june 2013 member states of wipo (the world intellectual property organization) concluded a landmark treaty to reduce copyright impediments to the dissemination of literature to print impaired people. its effectiveness is not yet clear. meanwhile, critics hold that disability studies’ analyses have too often lacked insight into the personal and psychological ramifications of exclusion. this article provides an account of the ‘book famine’ from the perspective of a print impaired south african disability researcher, arguing that thorough investigation of the impressions of exclusion is necessary for change. the account highlights the personal, even malignant psychological reverberations of deprivations such as the ‘book famine’, which may carry traumatic effects which cement the status quo.we read to know that we are not alone. (nicholson 1990) introduction top ↑ as the age of digital information embeds itself, it is tempting to believe that the problem of print access for people with visual and other disabilities is fast becoming a thing of the past. unfortunately this is not true. gross inequalities in access to the internet, it skills training, devices, affordable and accessible literature, as well as the basic educational levels required to engage with the printed word, remain massive obstacles to providing disabled people with the freedom to read. as with so many barriers to participation, technological remedies are available, but not implemented. for decades international copyright law has been a key stumbling block to literature provision for those who cannot read in the usual way. but in june 2013 member states of wipo (the world intellectual property organization) finalised a treaty which, it is hoped, will meaningfully improve print access for disabled people. the treaty empowers states to create an exception in national copyright laws, authorising the production of accessible copies of books and other publications for disabled users. the agreement also provides for cross-border sharing of accessible materials between member countries. at present, copyright law dictates that countries produce their own accessible versions, as well as (in most cases) gain individual copyright clearance from publishers. this creates wasteful duplication of capacity amid limited resources, as well as immense inequality between developed and developing nations. developed countries, such as the united states of america (usa), have large collections of accessible materials which cannot cross borders, leaving the majority of the print impaired population in the world overwhelmingly dependent on local charities and ngos for literature. for most, this will mean no reading. the world blind union estimates that only 7% of published books are ever made accessible in high-income countries; the corresponding figure is less than 1% for poorer nations (wipo 2014). this appalling circumstance is known as the ‘book famine’. the term is apt. the usa initially caused consternation by declining to sign the treaty. however, the superpower finally did sign in october 2013, bringing the number of signatory states to 57. we now wait to see which countries will proceed to ratify the treaty, thereby operationalising it in national administrations. in the usa, ratification requires a two thirds majority vote in the senate, where republicans have a long history of blocking treaties agreed to by democrat administrations. there is, therefore, still some way to go. but what does it mean in individual lives to survive without literature? as someone who has lost reading through a degenerative sight impairment, i followed the lead-up to the wipo summit in marrakech with fluctuating feelings. there was a strand of hope, but it was stifled by something else: a dry, cynical and distracted feeling that little would come of it. later, when the news broke that a treaty had been concluded, the constriction remained. this reaction may seem sensible, as ratification is now the burning question. but i had other reasons. a history of scrounging had filled my relationship to reading with feelings powerful enough to paralyse and undo me. with this article i try to investigate these feelings, to add some human, personal dimensions to the book famine. i love books, i love reading, and as we shall see, tracing the meaning of inaccess in my life requires exploring many years and layers of self-development. from here the article proceeds as follows: i begin with my own thoughts on (1) what reading can mean in human lives; and (2) why exploring the emotional layers of deprivation is so important for disability studies. after arguing that exclusion always brings not only unequal opportunity, but also an assault on identity, i tell some of my own story of reading. as is the case with auto-ethnography (ellis & bochner 2000; ettorre 2005), i do not claim neutrality or transparency. what i aim to provide is an experiential account showing that disability realities such as the book famine have lasting emotional reverberations which are influential, and deserve attention. the tone of internet postings on the treaty suggests that my thoughts may find some resonance amongst the print impaired community; i await comments with heartfelt interest. reading as freedom top ↑ where food sustains the body, reading can nourish the mind and soul. reading is an essential conduit to imagining and re-imagining worlds, social and cosmic, material and abstract. reading literally makes the world bigger, both inside and out, as new possibilities for how to be enrich identity repertoires and deepen personal and social insight. to read is to become more fully a citizen, as democratic processes become better understood, laying a basis for choice. obviously, reading is how we learn. not being able to read through poor literacy, poverty or disability is a potential death blow to advancing economic participation. in a very real sense, it is hard to take part in the world without access to the printed word. through lifelong development, avenues of reading feed the elaborating of identity. how do i know who i am? what i love? what interests and moves me? i try it on through reading. by reading i taste the world, and develop my tastes for it, growing insight into that which makes my existence meaningful. without a world of ideas and things to stir my inner sounding board it is harder to know who i am. the alternative is existing in watchful silence, struggling to configure my being in relation to others. to not experience that relatedness is, in a real sense, to not belong. one phenomenological thread of the global disability story is that of an ascribed, inherent difference with the power to undo belonging. where disablism brings material, emotional or existential homelessness, reading can be a home. writing can mirror and validate inner experiences eschewed by one’s milieu, shoring up the self as would an attuned human home (winterson 2011). but perhaps the most telling truth is the simplest. reading is a joy. and not being able to read, perhaps especially if one once could, can feel like starvation. to countless print impaired people around the world, i believe it does. deprivation is personal top ↑ elsewhere i have made the case that investigating personal and psychological aspects of disability exclusion is essential to change (watermeyer 2006, 2009, 2012a, 2012b, 2013), contradicting the dominant, materialist-oriented ‘social model’ view (e.g. barnes 1998; barnes, oliver & barton 2002; finkelstein, 1996; oliver 1990, 2001). reducing analysis of the book famine to the sheer materiality of services is a miscarriage of our work as social scientists. deprivation has, perhaps fundamentally, an existential face. if others at all share my experience, the interminable hunger for reading has left deep emotional imprints which can affect identity as well as trust in disability-related support. surviving grinding deprivation can mean having to suffocate hope. in this position being hopeful feels dangerous, as it echoes down a well of disappointments.experiences of unequal resource provision are never subjectively neutral. instead, it is in our nature to make sense of social contradictions in personal terms. when others are provided for and we are not, somewhere inside the question emerges ‘what is it about me which means i must be left out?’ the question plays with the idea that i am less deserving. natural defences against the traumatic arbitrariness of unfairness can strengthen the insinuation, as we involuntarily twist and turn to make sense of a contradiction which hurts. consider the scenario of school children in a physical education class being selected by team captains. it is very hard for the last, unchosen child to reflect confidently on the chance inhumanity of the procedure. despite psychological resistance, he or she is haunted by fantasies about the faults others see. disabled people are called to take on the inner identity of one who, because of the marker of impairment, is destined to live without that which others are freely given, to not be chosen. without some psychological co-opting, it is hard to see how global disability inequality could remain as extreme and stubborn as it does (watermeyer 2012a). disability-related deprivation also dovetails with pervasive prejudices about damage and the inability to participate. together these aspects can take on a dimly held chimera of rationality, based on unseen judgments directed at the self. the slim safety afforded by this position is that it distracts us from the dangerous idea that a different world is achievable. it is safer to be resigned, even reconciled to not having, than to be tormented by a persistent wrong, a contradiction which is always immediate. as an analogy, scholars of poverty explain that it is relative deprivation which cuts the deepest. here, the imbalance between one’s poverty and the wealth of others is understood as injustice, and the pain is excruciating. for colonial peoples interpellated into racist regimes the pain, arguably, is deflected by an attack on the self – i do not have because of what is wrong with me (davids 1996:214). no matter the emotional compromise, entering that part of ourselves in which we feel able to have and deserve will mean confronting conflict and loss. scenes from my story of reading top ↑ i began life with full sight, as my eye condition is degenerative. learning to read was, for me, like falling in love. i read insatiably, filling my young mind with stories, places, creatures, and imaginings. my time of reading freely began around six years old, and continued for a decade. but my sight was degenerating all the while. as i passed the mid-point of my teens, impairment began to intrude on my reading reverie. i found myself straining, letters seemed to jump and disappear on the page, as my fingers involuntarily clutched the book a little tighter. the words were slipping away, and with them my periscope into the world. losing the words felt like being left behind, left by myself. it is because the body knows water that thirst is so excruciating. suddenly i had to survive on a little less each day, and then none at all. no books about prehistoric beasts, unsolved mysteries or teenage love affairs. no magazines, no newspapers, no comics. no stories. no food. and somehow no escape. i recall vacillating between frantic disbelief and dull dissociation. the latter was part of an unarticulated, growing sense that loss in my life was somehow predictable, inevitable. a hard inner taskmaster was demanding that i be resigned.with my mother as reading assistant i achieved a university-entrance certificate at a mainstream school, though performing far below potential. i had been used to easily coming first in my class, and now was not far above average. in my family disability was hardly ever spoken about, whilst at school access provision was by turns absent, grudging, unusable; never something i could trust. as words disappeared off pages, so too did the verbiage of teachers oblivious that their blackboard descriptions, gestures and textbook references were mumbo-jumbo to me. everyone seemed to be reading, sharing a world of understanding which left me out in the cold. the perception that family members could not bear the reality of my impairment (french 1993; watermeyer 2009), along with my school’s mix of hostility and neglect, left me apologetic and unentitled as i entered university. my socialisation signalled that admission to the social world required managing my ‘defect’ alone and in silence. impostor fears are common amongst university beginners, but mine were acute. what people did here was what i could not do – read. the book famine had set me apart. i remember wandering down a library corridor around the beginning of my first year, with a surreal awareness that i could not extract knowledge from even one of the millions of items that surrounded me. i was supposed to be able to read, and my illegitimacy made me fearful. but much more than that, i wanted to read, to feast on all of that knowledge. everything at university happened via the printed word. without conscious reasoning i felt certain that if i ‘confessed’ my inability to lecturers or peers, the bewildered response would be ‘um … so why are you here?’ i sat still in tutorials whilst yet another hefty course reader flopped onto the desk in front of me. i wanted and needed to read but had no way to do so. i moved around the campus, ‘just fill in this form … consult the course handbook … acquaint yourself with the library card abstract system … browse the journal sections’, and so it went on. all the while my stomach lurched with the paradox of a recent, painful loss juxtaposed with the guilt of a trespasser. the tasks all boiled down to one thing: we are here to read books. i made do, at a university which in the 1980s had no assistive services for sight impaired students. again my mother stepped into the gap left by disablist society, reading books in anthropology, sociology, literary theory, psychology and much else. at times the stress for both of us was unbearable, as deadlines approached and i was goaded by unread articles piled on my desk. the pain of words so near and yet so far remained barely hidden, appearing as self-blame for my poor organisational skills, my anxiety and procrastination, my laziness. reading auditorily rather than visually is a skill which must be developed; anxiety makes the process harder. in this modality one is not in control of the words, of the means of production. inexperienced, i listened too hard, despairing as sentences seemed to fall jumbled in my lap. since losing my beloved books at around 16, i had been advised to use south africa’s postal tape library for print-impaired people, based in grahamstown. so began a disturbed and addictive relationship. some people in abusive relationships keep coming back, although never getting what they need. the reasons for this are complex a mixture of self-defeating compulsion, a sort of desperate hope, and the need to agonizingly re-tell a story of loss from before. hidden between the lines is the story’s moral: an account of why one did not deserve in the first place. the moral may be so embedded as to make feeling cared for – nourished – virtually impossible. the library’s selection was tiny, its service neglectful, and its production quality mostly poor. but worst was the waiting. i would request works by a particular author, and spend months watching the postman. anyone who knows the joy of literature will easily imagine the knife-edge between having and being bereft. to draw a whimsical comparison: imagine the frustration of mislaying a novel one is enthralled by in mid-read. but this novel can never be found. after months of waiting, often nothing would arrive. or books by authors i would never choose were delivered, mostly thrillers or popular romance novels. along with these came ‘magazines’ comprising trite, outdated excerpts from the equivalent of village chronicles. on rare occasions a treasure would arrive – a novel by a writer i loved or wanted to explore. amid the dry waiting, it felt unreal in my hands. then i might slide in the first cassette to find that it was so poorly read as to be not only unenjoyable, but virtually unintelligible. when one’s soul has experienced a banquet, it is hard to be thankful for scraps from the kitchen door. ‘this is what you read now’, i felt was being announced to me; ‘this is what blind people read’. i’m sure that my emotional state caused me to throw out several babies with the bathwater, but i couldn’t help it. it was as though the breast had soured. what was offered was just too distant from what i recalled the blissful freedom of wandering around a library or bookshop, drawing books from the shelves, and sampling what was inside. it would have helped to approach things in a rational, pragmatic way, by making repeated orders and carefully cultivating relationships with library staff, thereby making the most of the little that was available. but i could not find it in me to do this. like one trapped in the serial disappointments of an abusive relationship, my actions were driven by conflicted emotion, not reason. a pattern emerged. for long periods i would disengage from both the library and hope, finding a dull security in being clear that i would have no reading. encouragement from friends would then move me to try again, as a critical voice whispered that being so bereft was mostly my own fault. the real problem, went the self-accusation, was that i was stubborn and ungrateful. inevitably i again banged my head on disappointment, and re-established my resolve to steer clear of hope. one sees this vacillation in the relationships of people who have suffered traumatic abandonment – in other words, a broken heart. for me, losing the freedom to read had been heartbreaking. even now, twenty years later, i carry a self-defeating resistance to proposed solutions to disability-related exclusion. scepticism is often justified. but below any rational assessment lies a sticky residue of disappointment, deadening creativity and trust in favour of emotional survival. perhaps this is part of my attachment to persecution, needing to be forgotten and starved to show how forgotten and starved i felt. i think so. though never expressing it, i felt irrationally resentful of the reading habits of others. it seemed obscenely wasteful to squander the freedom to read on cheap escapism. despite my defences, or because of them, i was still drawn to bookshops. cover titles were legible to me, so i was able to browse. and browse i would, until rising waves of anxiety made me leave, the smell of other people’s books staying in my nostrils. many people are baffled by someone who seems sighted but cannot read. when asked to fill in a form in a bank i try to explain as clearly as possible that i cannot see well enough to read. on countless occasions i have been ignored or, more likely, scolded for being irresponsible. ‘you should get glasses!’ is often the irritable response after i have explained for the second or third time. a decade or more after becoming print impaired i still received books on my birthday, even from close friends. family members continued to direct me to newspaper articles i should read. in a different sort of denial, people expressed to me their gladness at how ‘surely’, there were services ‘out there’ to provide for my needs. it was always hard to disillusion them. to a reader, the notion of ‘no reading’ can stick in the gullet like a fish bone. many years ago, when i had impressed my non-access to reading on an acquaintance, she exclaimed that without reading she would never be able to be alone. perhaps she could only be alone with the reassurance reading offered that she was, in fact, not alone. after postgraduate study i was offered an academic post at a university. with no clear idea how i would manage my responsibilities on the scraps of reading access i had, i accepted. to decline would have felt like giving in to neurotic self-defeat. my familiar impostor feelings began to spiral. ‘if they only knew’, i thought; if my students only knew how little i have read about the theory i am teaching. the stress of not knowing how i would do enough (or any) preparatory reading before a seminar is difficult to explain, with its mix of illegitimacy, shame and something like deceit. the book famine left me feeling useless, like a pretender. at the time, document scanning was becoming available. it was unreliable and slow, but might have been of more benefit to me if i had used it systematically. instead, it took up the position of an inadequate ‘solution’ which, to my detriment, i unconsciously sidelined. as student and academic i believed that i had to be more astute than others to perform only well enough, as i would have read a fraction of what my colleagues had. it was imperative that i make maximum use of the little mental food at hand. my assumption, perhaps untrue, was that others were reading voraciously; i had to compensate or disguise my ignorance. i could never, would never, catch up. for a time i tried managing my own small group of volunteer readers, respondents to signs i posted on campus. it didn’t work. firstly, it felt peculiar to be remunerated for work i could not fulfil without the unpaid assistance of others, especially when i felt i was performing my duties so poorly. secondly, the precious fragments of reading time were seldom consecutive, providing no continuity as i tried to grasp complex material. last, readers were often unreliable, and differences in style and ability were difficult to manage. my anxiety was no help. i listened too hard, as my conscience urged me to ‘make the most’ of this minimal resource. reading with limited assistance is analogous to an infant being fed on schedule rather than demand. it is not need, hunger or readiness that starts the feeding, but external variables which must be accommodated, whether or not the baby is ill, tired, upset or just disinterested. spontaneity is thwarted, and creativity suffers. after some years of negotiation, my university provided me with a dedicated reading assistant. part, though not all, of the reason why this took so long was my struggle to believe that my impairment and my ability justified the help. nothing i recall in my socialisation had indicated that this idea might be true, least of all the book famine itself, and the measly institutional attempts at ameliorating it. over perhaps the past eight years the audio-book business, in the form of downloads purchased on the internet, has expanded immensely. this has changed my life. for the first time since the mid-1980s i have an abundance of novels that i can and wish to read. whilst still limited, the choice in fiction is exponentially larger than before. still, niches such as my passion for south african writers are not catered for, save for the few local authors with a big international presence. crucially, non-fiction access remains paltry. in particular, academic books are hardly present at all, since it is an entertainment industry. the target market is primarily ‘mainstream’, comprising nondisabled people who read via audio whilst commuting, working or relaxing. one cannot resist a wry smile at how, when services are aimed at the ‘real world’ of (nondisabled) commercial interest, production standards and availability soar. i have always felt that charity-based service organisations expect something like gratitude from me. by contrast, modern consumers demand immediacy and perfection or will take their currency elsewhere. i see other sight-impaired people feeling at once overjoyed and slighted. but like me, they will get over it. meanwhile, access to the printed word via scanning and text-to-speech computer software has also improved significantly as the technology has advanced. the good news above needs heavy qualification. to begin, a commonly held view that scanning technology and computer screen readers provide something like equal access to information is almost pernicious in its falsity. an obvious first point is that this form of access depends wholly on the availability of devices, software and training, far out of reach to most of the developing world. in particular, it is safe to assume that the majority of the world’s sight-impaired population is poor (world health organization 2011). beyond this, scanning is a slow and cumbersome process, rendering documents likely to contain patterns of errors stemming from print quality and font style in the original text. but more significantly, reading via listening to a synthesised computer voice is hard, particularly if the material is challenging. in my experience, a well-produced human-voice recording of a text is overwhelmingly favoured by print-impaired people, but far less available. further, audio-reading in any form will never allow for the important ability to skim a text, either to gather a few pertinent quotations or ascertain its general usefulness to one’s work. relying on scanning and text-to-speech, or voice recordings (if available), one commonly has the experience of going to great, time-consuming lengths to bring a book into an accessible form, only to find that it is a worthless irrelevance to one’s interests or research field. if the book has, as most do, only a small number of relevant passages, the audio-reader must listen to every word to happen upon these. for print-impaired people in occupations which require large amounts of reading, such as academics or researchers, live face-to-face reading assistance is thus indispensable. with this assistance, an individual may direct his or her reader in real time to skip some text, focus elsewhere, skim-read, and so on. moving to commercial audio-books, access in developing nations such as my own is miniscule, as it also depends on wealth, availability of devices and the internet, and level of education. and these concerns do not even touch upon the question of access to reading material in a mother tongue. south africa has 10 official languages other than english (11 in total). non-fiction access, so crucial to education and empowerment, barely exists in the developing world. it is a high-quality, government-funded and large-scale service which is required, and which the wipo treaty may have brought a little nearer. access to information is a right, and the book famine continues. it continues to hurt people, in ways which are poorly understood. conclusion top ↑ in her memoir why be happy when you could be normal?, jeannette winterson (2011) remarks that ‘books don’t make a home – they are one’ (my emphasis). as a child, winterson was saved from internalising the hatred of her adoptive mother by encountering alternative worlds in books. in novels she found pictures of herself and her homosexuality different to those engendered by her mother’s paranoia and sadism. in a real sense, books saved her life. without books the only version of herself imaginable was the one she was fed, a crippling mix of shame and unwantedness. many millions of disabled people around the world are subject to powerful myths to do with damage, undeserving, shame, and much else. where there is no home to grow a self capable of creativity, relationship and joy, books can feed the soul. in the words of one commentator, disability has been ‘soaked in shame, dressed in silence, rooted in isolation’ (clare 1991 cited in sandahl 2003:44).these harmful internalisations, coupled with exclusion, make it hard to grow a unified, self-assured and vocal disability minority (scotch 1988; watermeyer 2012). in lives where physical access to the world is barred, books are a lifeline to self, an antidote to interpellation. the human need for stories is most acute where systemic symbolic violence foreshortens the flourishing of self. in her life of isolation, every book was for winterson (2011) ‘a message in a bottle’ sent from a world with different dimensions. ‘the wider we read’, she concludes, ‘the freer we become’. the world’s disabled people need the freedom of reading. acknowledgements top ↑ competing interests the author declares that he has no financial or personal relationship(s) that may have inappropriately influenced him in writing this article. references top ↑ barnes, c. 1998, ‘the social model of disability: a sociological phenomenon ignored by sociologists’, in t. shakespeare (ed.), the disability reader: social science perspectives, pp. 65–78, cassell, london.barnes, c., oliver, m., & barton, l., 2002, ‘introduction’, in c. barnes, m. oliver, & l. barton (eds.), disability studies today, pp. 1–17, polity press, cambridge. davids, m.f., 1996, ‘frantz fanon: the struggle for inner freedom’, free associations 6(38), 205–234. ellis, c. & bochner, a., 2000, ‘autoethnography, personal narrative, reflexivity: researcher as subject’, in n. denzin & y. lincoln (eds.), the sage handbook of qualitative research, pp. 733–768, sage publications, thousand oaks. ettorre, e., 2005, ‘gender, older female bodies and autoethnography: finding my feminist voice by telling my illness story’, women’s studies international forum 28, 535–546. finkelstein, v., 1996, ’outside, inside out’, coalition, april, 30–36. french, s., 1993, ‘“can you see the rainbow?” the roots of denial’, in j. swain, v. finkelstein, s. french & m. oliver (eds.), disabling barriers – enabling environments, pp. 69–77, sage publications, london. nicholson, w. 1990, shadowlands, samuel french, london. oliver, m., 1990, the politics of disablement, macmillan, london. oliver, m., 2001, disability issues in the postmodern world, in l. barton (ed.), disability, politics, and the struggle for change, pp. 149–159, david fulton publishers, london. sandahl, c., 2003, ‘queering the crip or cripping the queer? intersections of queer and crip identities in solo autobiographical performance’, gay and lesbian quarterly 9(1), 25–56. scotch, r., 1988, ‘disability as the basis for a social movement: advocacy and the politics of definition’, journal of social issues 44(1), 159–172. watermeyer, b., 2006, ‘disability and psychoanalysis’, in b. watermeyer, l. swartz, m. schneider, t. lorenzo & m. priestley (eds.), disability and social change: a south african agenda, pp. 31–43, hsrc press, pretoria. watermeyer, b., 2009, ‘claiming loss in disability’, disability and society 24(1), 91–102. watermeyer, b., 2012a, ‘is it possible to create a politically engaged, contextual psychology of disability?’, disability and society 27(2), 161–174. watermeyer, b., 2012b, ‘disability and countertransference in group psychotherapy: connecting social oppression with the clinical frame’, international journal of group psychotherapy 62(3), 393–417. watermeyer, b., 2013, towards a contextual psychology of disablism, routledge, london. winterson, j., 2011, why be happy when you could be normal?, random house, london. world health organization 2011, world report on disability , world health organisation, geneva, viewed 03 december 2011, from http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf world intellectual property organization (wipo), 2013, wipo magazine , viewed 13 march 2014, from http://www.wipo.int/wipo_magazine abstract introduction inclusive education in south africa research methodology findings discussion conclusion acknowledgements references about the author(s) amarachi j. yoro department of educational psychology, university of johannesburg, johannesburg, south africa jean v. fourie department of educational psychology, university of johannesburg, johannesburg, south africa martyn van der merwe department of educational psychology, university of johannesburg, johannesburg, south africa citation yoro, a.j., fourie, j.v. & van der merwe, m., 2020, ‘learning support strategies for learners with neurodevelopmental disorders: perspectives of recently qualified teachers’, african journal of disability 9(0), a561. https://doi.org/10.4102/ajod.v9i0.561 original research learning support strategies for learners with neurodevelopmental disorders: perspectives of recently qualified teachers amarachi j. yoro, jean v. fourie, martyn van der merwe received: 13 aug. 2018; accepted: 28 nov. 2019; published: 06 feb. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: inclusive education envisages the improvement of the quality of education for all learners. this further implies that schools must adjust all systems of teaching and learning to accommodate all learners regardless of their diverse needs. the reduction of educational inequalities through inclusive practices is aimed at supporting the accomplishment of academic outcomes for all. learners presenting with neurodevelopmental disorders (ndds) place specific requirements on teachers, particularly when they find themselves in mainstream classrooms. objectives: this study focused on the learning support strategies used by recently qualified teachers in accommodating learners with ndds in mainstream classrooms in the gauteng province of south africa. method: a qualitative approach was used to explore the support strategies used by recently qualified teachers in mainstream classrooms when dealing with learners with ndds. purposive sampling was used to select six recently qualified teachers from different mainstream classroom. data were collected using semi-structured interviews, observations and critical incident reports. results: the findings revealed that teachers employ a variety of support strategies such as cooperative learning, peer learning, ability grouping, extensive visual aids and curriculum differentiation in an attempt to support learners. the support provided by the teachers was evident in their performance as learners with ndd were able to learn and understand the lessons irrespective for their barrier to learning. conclusion: contrary to literature findings that teachers do not support learners with diverse needs because of lack of skills, training and knowledge, this study revealed that recently qualified teachers employ a variety of support strategies to support learners with ndds. however, it appeared that these support strategies were rather general teaching and learning strategies. more support strategies should be applied to help learners with ndd in the mainstream classroom. keywords: inclusive education; neurodevelopmental disorders; recently qualified teachers; mainstream classroom; qualitative research. introduction neurodevelopmental disorders (ndds) are regarded to be multi-dimensional conditions that occur because of abnormal brain development (mullin et al. 2013). learners presenting with ndds show signs of cognition, communication, behaviour and/or motor skills challenges resulting from brain development. learners with ndds such as pervasive, cognitive impairments and specific learning disorders present teachers with numerous challenges, such as disruptiveness, excess workload, inability to complete learning outcomes and poor academic performance (fuchs et al. 2003:158). teaching a learner diagnosed with ndd is challenging as it requires adequate attention and care until the learner develops to a level of independence (robinson, shelton & malow 2016). these ndds are even more challenging for a recently qualified teacher as it requires that adequate support is provided to accommodate diverse learning needs in the classroom (nketsia & saloviita 2013:14). studies have shown that teachers lack the required knowledge and skills to accommodate and support learners with barriers to learning in the classroom (eloff & kgwete 2007; phasha, mahlo & maseko 2013). given the potential challenges newly qualified teachers may experience when teaching learners presenting with ndd, this study explored the understanding and experience of recently qualified teachers as well as the support strategies applied in accommodating and supporting learners with ndds in mainstream classrooms in their first year of teaching. inclusive education in south africa before the practice of inclusive education in south africa, engelbrecht (2006:254) reported that between 1948 and 1994 the only competitor of the policy of education was the state which showed disregard and lack of provision for learners with barriers to learning. special needs education at that time was provided on a racial basis and equal access to education was inaccessible to all learners. furthermore, by legislation and policy, the system of education separated children without disabilities from those characterised as having special needs. during this period the south african education practised the traditional medical approach, which labelled learners, tagged and discriminated differently according to race, language, disability, etc. inclusive education was accepted as a global policy for attending to learners with barriers to learning and diverse learning needs at the spain salamanca world conference on special needs (unesco 1994). the aim of this conference was not on putting the learners into the school system, rather to change the system of education to ensure equal access to education for all learners. this strategy ensured social justice and equity in order to accommodate the diversity of barriers in the school system (motitswe 2014:259). to meet the global movements in inclusive education, the department of education (doe) in south africa introduced the ‘education white paper 6 on special needs education: building an inclusive education and training system’, which is a policy framework focused on building an inclusive system of education that is focused on the principles of equality for all learners, human rights, equal participation and access to education (doe 2001). implementing inclusive education is determined by the teaching methods and approaches used by teachers to accommodate all learners in the mainstream classroom. the application of inclusive teaching strategies is an important aspect of inclusive education (florian & black-hawkins 2011:815). inclusive education encourages complete involvement and equality through supporting learners with disabilities from limiting family backgrounds, thereby providing them with an opportunity to participate in the education system (mcconkey 2003). thus, inclusive education is a tool for transformation, a democratic means of understanding values that accept human diversity (swart & pettipher 2005). inclusive schools must have an open arm for all learners who are new to the mainstream school system and must seek to ensure that the environment is receptive to all regardless of their differences in abilities (maguvhe 2015). inclusive education focuses on all subject disciplines and demands that teachers identify, accommodate and support different levels of learning needs of children (makoelle 2016:60). inclusive education is about accepting that all children can learn and that they need support to ensure effective learning. this support entails adjusting and restructuring school structures, learning styles and strategies to address and accommodate the different learning needs of learners (doe 2001). providing support also includes improving the classroom behaviour of learners, applying a variety of teaching methods, differentiating the curriculum and modifying the classroom environment in order to meet the various needs of learners. teachers’ attitudes towards inclusive education makoelle (2016:72) contends that the practice and concept of inclusive education is still a mystery to educators because they struggle to understand what constitutes an inclusive classroom. the state of inclusive pedagogy in south africa reveals that there is a misconception amongst educators about inclusion and special needs education. this misconception is a result of the dominated paradigm prior to the practice of inclusion in 1994. however, there is a proof that some mainstream schools in the state and independent sector have expressed a desire to implement inclusive education by accommodating learners who ordinarily are meant to be in a special school (engelbrecht, oswald & forlin 2006:122). many teachers experience stress and are anxious when interacting with learners with additional needs in an inclusive classroom because they lack adequate training to accommodate and support these learners with additional support needs (engelbrecht et al. 2013:309). regardless of the commitment of mainstream schools to accommodate learners with additional learning needs, it is also evident that teachers have displayed negative attitude towards implementing inclusivity in the classroom (nel et al. 2011:76). one major problem experienced is that learners who are meant to be accommodated in mainstream schools often find themselves as a ‘guest’ in the classroom (walton 2013). this may be because of existing expectations of the inability of the teacher to provide the needed additional support to enable these learners to participate fully in the learning process. the teachers feel unprepared for the practice of inclusive education in the classroom (hay, smith & pauslen 2001). the major reason behind the existing teachers’ inability to accommodate and support these learners is that they lack adequate knowledge and skills required to accommodate learners with barriers to learning (mahlo 2017:2). according to eloff and kgwete (2007), these teachers admitted having only ordinary diplomas and degrees in education as their pre-service training programmes failed to expose them to the reality of the diverse needs of learners in the classroom. this study further revealed that newly qualified teachers who have been trained in inclusive education exhibit a positive attitude towards learners with ndd and also employ a variety of support strategies in accommodating these learners. learning support in inclusive settings this study explored teachers’ understanding, experience and various support strategies used in accommodating learners with ndd in mainstream classrooms. support in the context of this study is regarded as any and all activities that elevate the ability of a school as a system to respond to the diverse learning needs of children. such support also assumes the availability and readiness of a group of teachers to assist and accommodate learners with barriers to learning (calitz 2000:22). ‘learning support’ is a somewhat contested term. for example, in remedial educational contexts, a medical deficit model of diagnosis and categorisation may be followed, which would imply that the ‘learning support’ offered should be the treatment of the deficits that the learners have been diagnosed with. on the other hand, learning support as viewed from the perspective of the socio-ecological model (dreyer 2013:57) acknowledges the potential learning ability of learners to grow gradually at their own pace to achieve an independent level of learning and personal growth. this growth is supported by using a variety of support strategies, applying different learning styles that suit various learning abilities, by changing systems in the school context and through collaboration with other stakeholders within the school system (landsberg, krüger & nel 2005:145). in essence, therefore, learners in need of ‘remediation’ or learning support are not separated from the general classroom teaching in inclusive education. supporting the needs of these and all other learners in the classroom thus becomes the focus of learning support in inclusive settings. inclusive policies such as the education white paper 6 stipulate clearly that learning support for learners with additional needs should be seen as an everyday practice in the classroom and should be provided in such a manner that the barriers to accessing the curriculum and learning opportunities are removed and addressed (doe 2001). classroom teachers need to provide support using various teaching strategies that cater for all learners’ active participation during the lesson and through this support learners can interact with the teacher and other learners whilst learning is established (mittler 2012). neurodevelopmental disorders neurodevelopmental disorders are a group of conditions that occur at the beginning of a child’s developmental period before transiting into formal school (craig et al. 2016). learners with ndd are challenged with weakness in memory and may have behavioural, motor skills and speech problems. this onset period is known to manifest developmental deficits that produce impairments of personal, social, academic or occupational functioning (almogbel, goyal & sansgiry 2017). neurodevelopmental disorder is also a genetic or brain condition that causes childhood onset brain dysfunction. neurodevelopmental disorders manifest in the developmental period and co-occur in individuals with autism spectrum disorder (asd), attention deficit hyperactive disorder (adhd), specific learning disorder and intellectual disability. neurodevelopmental disorders are prevalent in general classrooms, and the resultant challenges faced by learners presenting with these conditions manifest as behavioural and learning challenges, particularly heightened by ongoing assessment expected in the mainstream (beckman, janson & von kobyletzki 2016). in the past two decades, there has been a global increase in the number of learners with ndd attending mainstream and public schools (lanzi et al. 2004:47). the number of learners with autism disorder, for instance, in the usa is considered to be 1in every 68, whilst the numbers in lowand middle-income countries are considered to be much higher as 90% of children with autism disorder are found in these contexts (franz et al. 2017). prevalence rates of adhd, for example, are considered to be 5% for children and adolescents in the south african context (vogel 2014). reasons for the increase in ndds range from genetic associated causes to socio-emotional ones. as indicated earlier, the prevalence appears to be higher in lowto middle-income countries where possibilities of deprivation, genetic and perinatal problems, the occurrence of infectious diseases, immune deficiencies and nutritional factors occur frequently (vogel 2014). associated trauma, physical, social and emotional, as well as environmental decay and toxicity are further factors that influence the occurrence of ndds. furthermore, there have been recent advancements in educational policies that promote and advocate for all learners learning together irrespective of their learning barriers. the education white paper 6 in south africa is an example of policies that promote equality in the classroom. neurodevelopmental disorders found in the mainstream schools are mostly mild or moderate disorders and in rare cases severe as learners with severe or profound ndds are given special attention in special needs schools (bishop 2010). most research on ndds has focused on only one specific ndd, such as asd and adhd specific learning disorders. however, it is evident that all these ndds are present in the classroom (romski et al. 2018). the implementation of the education white paper 6 (doe 2001) has opened the classroom doors to all learners regardless of their barriers or disabilities. learners with ndd are also expected to be well accommodated as they seem to manifest the most sensitive issues for teachers within inclusive classrooms (engelbrecht et al. 2003). teaching mathematics to learners with ndd in ireland revealed that in a mainstream classroom of 50 learners, 15 were found to have different ndds, such as asd, adhd, dyspraxia and dyscalculia. autism spectrum disorder and adhd were described to be invisible in the classroom as they were mild and unidentified (venkova & mcgarraghy 2014). attention deficit hyperactive disorder is described as a consistent pattern of inattentiveness that hampers development and manifests itself in two or more settings, such as home, school or work. it is known to disrupt the executive functions (focus, memory and action) of a learner’s cognitive processing (apa 2013). in the classroom, learners with adhd constantly disrupt and distract teaching and learning activities (sayal et al. 2018). participants in this study confirmed adhd to be one of the ndds evident in the mainstream secondary school classrooms. webb (2011) claims that learners with mild ndd may never be diagnosed formally and cannot be identified or registered for any kind of supportive interventions. research methodology using an interpretative, generic qualitative design (merriam 2009) newly qualified teachers from six mainstream, secondary schools in gauteng province of south africa were purposefully invited to participate in the study. these teachers had recently completed their postgraduate certificate in education and were teaching in inclusive mainstream classrooms, where some of the learners manifested with ndds such as specific learning disability (sld) and adhd. written informed consent was obtained from the participants and pseudonyms were used to ensure their anonymity. data were collected over a period of 6 months. the participants in this study consisted of five women and one man. the participants (aged 22–28 years) were representative of each racial group and had been teaching in the mainstream classroom for over 8 months. the schools were all secondary schools. three schools were located in an urban area serving a high socio-economic class, and the other three schools were in a township area serving low socio-economic class. these schools were purposefully selected because they had learners with ndd in their classrooms with teachers who were recently qualified. data collection data were collected using three different methods: semi-structured interviews, observations and critical incident reports. each of the interviews was carried out individually and lasted for about 45–60 min. the interviews were conducted at a convenient time for the participants to avoid interfering with classroom activities. the interview guide consisted of open-ended questions focusing on three broad themes. the first theme elicited the participants’ knowledge and understanding of ndds. the nature and kind of ndds was the focus of the second theme. the third theme described the support strategies used by the teachers in their classrooms to support learners with ndd. the questions asked were direct and flexible, which ensured credibility in interviewing participants (babbie & mouton 2007). one of the major advantages of semi-structured interviews is the comprehensiveness, detail and depth of information generated from the participants (creswell & poth 2018). the observation was used in collecting data as it is a major technique that offers a first-hand account of the study situation (merriam 2009). four out of the six participants were observed, and all observations were done within a 45-min class period. the aim of the observations was to help the researcher explore the kinds of ndd evident in the classroom and to look out for the support strategies used by the participants in accommodating learners with ndd. the observations were guided by a checklist that focused on the teacher’s experience, kinds of ndds in the classroom, support strategies and other extra notes. the observation was also used as a check on the data collected during the interviews. the final phase of data collection was done in the absence of the researcher as participants were given a critical incident report document to complete. the purpose of providing this document to the participants was to enable them to record any incident that occurred with learners exhibiting ndd in the absence of the researcher. this document had columns for the teachers to write down the incident that occurred, and how they provided support during the occurrence. there were also provisions for the participants to write down the challenges encountered in the course of the incidence. critical incident techniques are a step-by-step qualitative approach that offers a practical method of collecting information about human experience and their significance for the people involved (hughes, williamson & lloyd 2007). in the report, participants explained the types of ndds encountered and the support strategies used in accommodating the learners. data analysis six steps of thematic content analysis were applied in analysing the raw data to generate themes (braun & clarke 2006). the interviews transcripts, observation field notes and critical incident reports were carefully transcribed, ensuring that data from the audio-recorded interview were correctly typed out. the critical incident reports were transcribed through coding of the reported data and this process helped to easily match up the data with other data sets and themes. raw data were segmented into meaningful units and coded with a clear description, which amounted to more than a single word, thus not just ‘classifying’ data but awarding and interpreting the meaning as is the convention in the interpretive research paradigm (denzin & lincoln 2011). codes were generated through careful identification of patterns in data that answered the research question and used to establish categories that were refined to make connections between themes and categories to fit logical patterns and possible groupings (thornberg & charmaz 2014). themes were extrapolated by capturing and organising codes that have patterns and are relevant to the research question. the thematic analysis suggests that themes are reported, analysed, interpreted and supported by existing literature. trustworthiness is a way of ensuring thoroughness in qualitative research without losing its relevance (mahlo 2011). the principles of trustworthiness were adhered to throughout the research using informed consent, checking and confirming transcribed data with participants, and clarity of methods used for data collection. ethical considerations approval to commence the research was sought from the ethics committee at the faculty of education, university of johannesburg, after a scrutinised process. ethics consideration aimed at protecting the participants’ autonomy and dignity (babbie 2005). ethical clearance was obtained from the ethics committee at the faculty of education, university of johannesburg (ethical clearance number: 2017-022). findings theme 1: teachers’ understanding of neurodevelopmental disorders the responses indicated that teachers understood ndds well, particularly from a brain dysfunctional point of view. they understood ndd to be a learning problem that occurs during the child’s developmental stage and affects the brain, thereby creating cognitive challenges. participants also described ndd as brain problems that cause difficulty in reading, writing, learning, exhibiting extreme sluggishness and inability to understand lessons like their peers. this is evident in the following quote from a participant: ‘for me, ndd … is any learning problem that is concerned with the brain. that happened during a child’s development stage and basically like issues that affect the child cognitively. for example, i know a child who developed an ndd because he hit his head on a pool when he was a little child and because of that it affected his learning and all.’ (participant 6, female, 24 years old) neurodevelopmental disorder is a developmental disorder that requires maximum classroom support from the teacher in order to achieve equal learning. therefore, the participants’ understanding was considered imperative in their application of support strategies to accommodate learners with ndd in the mainstream environment. theme 2: teachers’ experiences of the different types of neurodevelopmental disorders this finding presents two sub-themes within the overall theme of teachers’ experiences of the different types of ndds, which play a role in the support strategies used by the teachers to accommodate learners with ndd. the participants reported adhd and sld to be the most prevalent in their classrooms. the participants reported having learners who manifested symptoms of sld and adhd, as well as a few learners who were diagnosed with adhd by an educational psychologist. teachers’ experience with attention deficit hyperactive disorder learners behavioural symptoms such as hyperactivity, excessive noise, unnecessary stubbornness and disruptiveness were part of the observed symptoms reported by the participants. participant 2 reported the presence of adhd in her classroom based on the consistent manifestation of adhd by some learners. she described these learners as experiencing difficulty in concentrating in the classroom, consistently disrupting other learners, moving around and always seeking permission to leave the class without any good reason: ‘for me, in all the classes i have taught i see adhd as more prevalent. yes adhd. it’s from my observation … from the symptoms you can dictate. like learners moving up and down, always looking for permission to go out, consistently disrupting other learners. you see them very restless … always discussing with classmates … find it difficult to concentrate and do classwork. with these symptoms yeah … one should dictate that the child has adhd.’ (participant 2, female, 25 years old) another participant described her experience as having learners manifesting adhd symptoms and had three learners who were already diagnosed, with one of them being placed on medication. the two participants who reported their experiences both agreed that these symptoms were consistent amongst these set of learners as they lacked the ability to provide minimum concentration to the lessons: ‘i observed them, like when you see a child consistently being up and down. not seating at a place, being excessively disruptive. not concentrating at all. so, when you see these signs it [is] easy for you to know. and yeah, they are about 3 of them with adhd in my entire classroom and they are diagnosed. one takes medication.’ (participant 3, female, 23 years old) teachers’ experience with specific learning disability learners the major sld symptoms experienced by participants are difficulties with reading, writing and spelling and difficulties with basic mathematical calculations. the findings were mostly based on the visible manifested symptoms by learners in the classroom as none of these was formally diagnosed by an educational psychologist. according to the participants’ responses, learners in their classrooms struggled to read and write, and this was also accompanied by difficulties in their cognitive functioning. the participants from the township school also acknowledged that the symptoms of inability to read, write and spell correctly were inappropriate considering the age and stage of the learners. ‘this school now is a government township school. the ndd i have really noticed is that of learners who cannot write correctly. it is just too much. learners here suffer from reading, writing and spelling problems. yes … i can identify him, but it is not diagnosed but the signs are clear that he has dyslexia …. like he struggles to write correctly, the spellings are way too wrong … for his age, it’s not meant to be so.’ (participant 1, male, 23 years old) ‘it is basically reading and writing. they mostly do not understand the questions. they find it difficult to read and understand. you need to help them to read. they don’t write nicely at all.’ (participant 6, female, 24 years old) during the classroom observation, learners who struggle to read and write were noticed. there were a few learners who had very poor handwriting and struggled to read and this was evident in the english class, as these learners had difficulties in reading the passage given to them as a class activity by their teachers. the researcher also observed extreme spelling errors and very poor writing as part of the difficulties identified in the classroom. in addition, the critical incident reports also confirmed the difficulties learners experienced in writing correctly, especially during class activities and assignments. specific learning disability manifests in challenges with learning foundational academic skills like reading, writing and mathematics. it may not necessarily be a result of the absence of teaching or lack of instruction in the classroom, but it affects the basic skills that are vital for learning such as reading single words, reading comprehensive paragraphs, handwriting, spelling, pronunciation and basic mathematical calculations. problems with these skills may result in difficulties learning in other academic subjects, such as history, science and social studies (johnson et al. 2010:11). theme 3: support strategies this theme highlights the various support strategies used by the participants, which include cooperative learning, visual aids, curriculum differentiation, peer learning, oral assessments and ability grouping. cooperative learning two of the participants reported having been successful in accommodating learners with ndd using cooperative learning. cooperative learning as a support strategy was used to assist learners with adhd in the classroom. participant 6 stated that ‘i use a lot of group work. like for those learners with adhd, i make them group leaders so that they can focus at least’. ‘you see with me neh? i don’t put them in alphabetical order, i make them work in groups and i walk round and round my class a lot. i want to see everything; i look at their work to see if they are doing it properly and if they are not getting it well. i hold them during break … like i use all sort of mediums.’ (participant 5, male, 29 years old) one teacher explained how learners with adhd responded well to the leadership role given to them as group leaders; this support strategy helped to increase their attention span and it helped them focus more on the task given. another participant reported on how cooperative learning was used to maintain discipline in the classroom whilst encouraging equal participation of learners with ndd with other learners. these strategies can be seen as a cooperative learning strategy. cooperative learning enhances learners’ ability to think creatively and actively engage with each other (johnson & johnson 2005:6). in addition, learners with adhd in the classroom can effectively master the curriculum when tasked to learn in small groups (murphy, grey & honan 2005). cooperative learning method requires group work and involves learners working with and learning from their peers (hashim & kawo 2017:373). visual aids visual aids were used by participants to enhance learners’ understanding of concepts introduced in the classroom. two of the six participants acknowledged that using visual aids helped learners with ndd to have a better understanding of the subject whilst teaching. participant 5 reported to have recorded improvement in learners’ classroom participation as well as improved performance during exams. ‘you know i use lots of pictures, so it helps them to understand and identify what we are learning. and you know my kids know how to draw a lot. so, we use drawing a lot to understand stuff while teaching, but so far so good it has not been so bad. their learning has improved.’ (participant 4, male, 26 years old) ‘especially when i use the powerpoint, the kids love to see images a lot. it makes them understand better. and i get to see it in the way they answer questions during the exams, you can always see that visual aids make them understand things more and more.’ (participant 5, male, 29 years old) visual aids can be used to enhance the understanding of learners, especially when explaining or introducing a new or major concept in the classroom (mathew & alidmat 2013:87). in teaching and learning different subjects, the use of visual aids plays a major role in ensuring that learners have a mental picture of the concept taught in the class (van staden 2011). most visual aids are used to clarify different concepts and terms that seem to be too difficult for learners to understand on their own (ajayi 2008). curriculum differentiation curriculum differentiation was used by the participants to bridge the gaps between the curriculum expectations and the learners’ current content knowledge. one participant reported to have supported learners with ndd through intervention classes which were designed to assist learners who could not read, write and understand basic mathematics during the main lesson. intervention classes were used to break down teaching into small chunks, using improved strategies such as mind maps, reading and writing exercises, and taking time to explain until the proper understanding of the concept is established. the participants also confirmed that the use of this support strategy had helped in improving the academic performance of learners with ndd in their classrooms. ‘my school has an intervention class, so i have intervention classes for learners who struggle. i try to find better ways of helping them, like taking them through the basics. i try to check where the problem is like some do not know how to use the calculator. i try to teach them how to read and write. like looking for better pictures, diagrams and making use of mind maps that will make them understand.’ (participant 5, male, 29 years old) ‘well … i started this in the first term, particularly the grade 8 learners who dint know how to grasp information. this support i render through my intervention class has helped them a lot even preparing for their exams. these classes have improved their marks.’ (participant 3, female, 23 years old) individualised attention and extra time for learners with ndd were also another support strategy reported by two participants. this was specifically given to learners who struggle to read properly in the mainstream classroom. allowing extra time, slower pace, individualised attention, simplifying the content and modified seating arrangements for learners with disabilities are also effective support strategies that could be used to differentiate the curriculum: ‘you see with me i am new. i’m still trying. sometimes i give extra time during classwork, i group all learners who can’t read, and i give them more attention and extra help, so they can at least understand what is going on. i know it is not much but at least that is all i can do for now.’ (participant 6, female, 24 years old) these strategies enable learners who struggle to learn at their pace other than being disadvantaged by the curriculum (dufor 2008). peer learning peer learning was used by the participants to support learners with ndd. the use of peer learning was efficient in helping learners who cannot learn on their own, as most of the times learners feel comfortable asking questions to their peers rather than to the teacher. peering strong learners with weaker learners was reported as a successful support strategy which encouraged active engagement and participation especially during class activities. as one participant stated: ‘more also, you see this peer learning really works. i never knew all this while. i only realised just last term, especially when i peer the strong and the weak learners together. like you see them teaching each other and engaging nicely with themselves. it is also another way that these learners have been able to receive support.’ (participant 4, male, 26 years old) cooperative learning may appear to be the same as peer learning because both cases involve learners working together to enhance their learning experience. however, cooperative learning involves learners working in groups to discuss ideas and solve problems together, whilst peer learning is happened when one learner leads or teaches another learner during a given task or class activity. this kind of peer learning is usually used to peer weak learners with stronger learners (so & brush 2008:320). a better way to explain the difference between these terminologies is that in cooperative learning learners learn together, whilst peer learning helps learners to learn from one another. these two approaches are highly advantageous when used effectively. both methods develop learners’ oral communication and leadership skills and boost their self-esteem and responsibility. learners’ attitudes to teamwork are also enhanced, which does not only help their learning process but also future employment and social involvement (dillenbourg 2002:7). oral assessments the oral assessment method was used to support learners with ndd who struggle to read and write age appropriately. oral assessments assisted to determine learners’ abilities rather than failing them for not being able to read and write. oral questions are asked based on the subject and the response is used to determine the learner’s level of understanding. one of the six participants supported learners with ndd by providing oral assessments: ‘i also have learners who struggle to read and write correctly, and i then access them orally. and assist them with counting that’s mathematics. so, i bring them to me and i listen to them orally, the moment i see they are able to understand and say something i usually just assess them instead of failing them because of their inability to read and write correctly.’ (participant 2, female, 25 years old) oral assessments are helpful in implementing inclusivity (huxham, campbell & westwood 2012:2). it is more beneficial to learners with sld as it helps build and retain confidence in themselves despite their weakness in reading and writing (mccormack-colbert, wyn jones & ware 2017). ability grouping ability grouping is another kind of support that involves grouping learners according to their academic performance in a subject (richard & schmidt 2002). participant 2 described ability grouping as a helpful support strategy in the mainstream classroom for learners with ndd, as this grouping helps to determine the level of attention needed in each group. learners who have difficulties in reading, writing and cognitive functioning are kept in a separate group with the aim of receiving personal support, such as extra time, slower pace and individualised attention. the participant explained that for a subject like mathematics where learners struggle to learn, she puts them in groups to know where to pay more attention and provide individual assistance. participants agreed that grouping learners according to their ability helps them to plan and provide teaching modification and adaptation that suits individual learning needs: ‘what i do is that i group them … like as a teacher you know that this is group a, b or c … so, from this grouping, you get to know how to handle them during the assessment. this makes it easier in terms of support and during the assessment. let’s say they are learning maths in their different groups[and] the work is very different. i try to make it easier for those with low cognitive functioning in group c.’ (participant 2, female, 25 years old) ‘i group these learners into levels 1, 2 and 3. so these learners in level 1 are the very slow ones like they struggle to read, write slowly, they learn slowly and do not understand anything. i have to take it bit by bit. so, during test or assessments, i take time to explain; i also give them extra time. but the other level does not have any issues with coping, so it’s much easier. it is to help me reach them nicely and where to focus more and pay more attention. you know like i just know that this set of people … i know hey need more of my time and energy.’ (participant 4, male, 26 years old) the practice of ability grouping may lead to additional stress for teachers as they are expected to prepare various materials and assessments for the different ability groups (kim 2012:292). ability grouping could bring feelings of inferiority and discomfort from the social stigma of being assigned to a lower level. there is a possibility that learners who are placed in lower groups or levels may develop a feeling of ‘learned helplessness’ where they accept the notion of being slow learners and therefore remain that way (luo & tsai 2002). ability grouping may be helpful in some context especially when teaching any kind of language to learners and it would be useful to continue with this practice (ireson, hallam & hurley 2005:445). these authors argue that changes need to be made in order for ability grouping to be more effective. one better way to bring about this change is to group average to high ability learners together to reduce the degree to which they are grouped. teachers with poor professional ethics have abused the use of ability grouping to the disadvantage of learners in the lower groups. discussion this study reports on various support strategies that newly qualified teachers applied in supporting learners with ndds in mainstream classrooms. what is, however, important to note is that the identification and diagnosis of learners with neurodevelopmental issues in classrooms is not an easy task and requires much more than merely noticing certain symptoms. learners who are younger than their age may be misdiagnosed as parents and teachers could mistake their immaturity to be adhd (elder 2010). using within-grade standards as a basis for diagnosis may impact negatively older children rather than younger ones. attention deficit hyperactive disorder may be difficult to identify in older children rather than in young children who may easily exhibit hyperactivity and inattentiveness. edwards (2009:29) argues that in most cases, both young and old children are over-diagnosed because of their inability to adjust or meet the expectations of the age or grade they find themselves in. in this study, apart from ndds that were confirmed by medical diagnosis, the researchers agree that teachers may have misdiagnosed the ndds in the classroom. this is not to say that there is no clear evidence of these symptoms; however, these symptoms could be a result of learning problems resulting from factors such as poverty, social background, poor teaching and illiterate parents. children with ndds are often known to be ‘masked’ and therefore they may not be noticed or identified in the classroom (schwandt & wuppermann 2016) except when the teacher has a thorough understanding of manifestations of ndds in the classroom. the findings reveal that newly qualified teachers have a good understanding of learning support and they were able to accommodate and support learners with ndds in their mainstream classrooms. this finding contradicts the views of engelbrecht et al. (2013) and walton (2013) who reported that teachers are unable to provide support for learners with barriers to learning in mainstream classrooms. the newly qualified teachers in this study were able to provide support, reflecting the effectiveness of their initial teacher training experience. nel, nel and tlale (2015) opined that teachers who understand the nature of learning barriers in their classroom tend to be more positive and provide support for learners with barriers to learning in the classroom. these teachers understood the different types of ndds and the importance of including diverse learners in their classrooms. they reported that learners with adhd and symptoms of sld were present in their classrooms. some of the adhd learners were formally diagnosed and were taking medication. learners with adhd manifested with symptoms of inattention, hyperactivity and impulsivity. at the secondary school level, learners manifesting these symptoms experience a major hindrance to effective learning. many learners displayed symptoms of sld, such as inability to read, write, spell and do mathematical calculations at age-appropriate grades or levels. these foundational skills are needed to master school subjects such as english, maths, economics and science. these challenges made it difficult for the newly qualified teachers to teach the secondary school curriculum; hence, there was a need to apply support strategies to enable these learners to learn effectively. the newly qualified teachers were able to provide additional support for these learners by applying a variety of support strategies, such as cooperative learning, ability grouping, individual consultation, close monitoring, oral assessments, differentiating the curriculum, the use of visual aids and peer tutoring. these strategies were reported to have slightly improved the academic performance of learners with ndd as well as ensuring that inclusive education was implemented in the classroom. teachers were able to identify and apply these support strategies because of their knowledge and understanding of the ndd and supporting diverse learners in the classroom. because teachers were providing these additional support strategies, pre-service training programmes should focus on these strategies for secondary school teachers. there is still a need for teacher training institutions to deepen the knowledge of pre-service teachers, particularly regarding practical in-class strategies for supporting learners with ndds. in-depth practical experience and training regarding ndd should be emphasised in pre-service teacher training programmes. the pre-service teacher curriculum should be revisited and restructured to focus more on providing skills, training and knowledge regarding ndds and current interventions that can be applied in the secondary mainstream classrooms. conclusion this study explored how newly qualified teachers accommodate and support learners with ndd in mainstream classrooms. teachers confirmed the existence of adhd and sld in secondary classrooms. the outcomes of this study also confirm that newly qualified teachers explore different means of providing support to learners with ndd in their classrooms. given this contextualised view presented in this article, one may ponder about the knowledge, ability and readiness of newly qualified teachers to aptly identify the symptoms and to adequately address the issues as part of the individual support offered to learners. becoming aware and proficient as teachers to support learners with ndd in general classrooms cannot be left only to trial and error, collaboration with practising others and parents of learners. instilling certain abilities and knowledge as part of the armoury teachers enter the profession with falls equally on the training they receive in teacher education programmes. the advent of and subsequent focus on an inclusive pedagogical approach to teaching, where rich learning opportunities are created for all learners, requires teacher education institutions and programmes to ensure that pre-service teachers are enlightened and their knowledge is deepened on how they can effectively provide additional support for learners with ndd. equipping teachers in this way may have a far-reaching effect on how learners are supported towards basic foundational literacy and numeracy skills in mainstream classrooms. acknowledgements the authors would like to thank the university of johannesburg for the support provided in conducting this research. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. they also declare that there is no conflict of interest with regard to the publication of this manuscript. authors’ contributions a.j.y. carried out the investigations and prepared the manuscript. j.v.f. and m.v.d.m. critically revised the manuscript. they also supervised and co-supervised this research work, respectively. funding information this research was supported by global excellence scholarship, university of johannesburg and an earmarked grant allocated as part of the teaching and learning development capacity improvement programme (tldcip), a partnership between the department of higher education and training and the european union. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references ajayi, i.a., 2008, ‘towards effective use of information and communication technology (ict) for teaching in nigerian colleges of education’, asian journal of information technology 7(5), 210–214. https://doi.org/=ajit.2008.210.214 almogbel, y.s., goyal, r. & sansgiry, s.s., 2017, ‘association 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inclusive education 17(11), 1171–1185. https://doi.org/10.1080/13603116.2012.742577 abstract introduction research method and design results discussion conclusion acknowledgements references about the author(s) kim coutts department of speech pathology, faculty of humanities, university of the witwatersrand, johannesburg, south africa bibi sayed department of speech pathology, faculty of humanities, university of the witwatersrand, johannesburg, south africa citation coutts, k. & sayed, b., 2023, ‘third party disability of family members of adults with dysphagia’, african journal of disability 12(0), a1040. https://doi.org/10.4102/ajod.v12i0.1040 original research third party disability of family members of adults with dysphagia kim coutts, bibi sayed received: 14 mar. 2022; accepted: 30 sept. 2022; published: 27 jan. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: third-party disability (tpd) has been studied in multiple patients including those with aphasia and hearing loss. only one study has been done in relation to caregivers of adults with dysphagia. third-party disability has been analysed using the international classification of function and disability (icf) framework. this study, therefore, used the icf model to explore tpd of caregivers of adults with dysphagia for the context of johannesburg in south africa. objectives: to describe how caregivers experience tpd when caring for adults with a dysphagia in johannesburg. methods: data were collected from five primary adult caregivers, who were all family members, from government clinics in johannesburg. this article reports the findings from the interviews that were analysed thematically using a top-down analysis approach. results: caregivers experienced challenges related to tpd mostly related to difficulties of being able to do activities of daily living for themselves, their household chores and attending social engagements. the use of body structure and function from the icf model was not overtly applicable to the caregiver population. a new visual representation has been suggested to highlight the key themes to augment the social and psychological changes as seen on the icf framework and demonstrated the specific interaction that these factors had on one another. conclusion: third-party disability is present in caregivers of patients with dysphagia. healthcare workers need to be aware of the impact that this can have when preparing home management strategies. this newly devised representation can assist in creating a locally relevant patient-centred care approach but requires future input. contribution: this article has provided greater insight into tpd in caregivers of adult patients with dysphagia in an urban african context. it has led to new information that can be used as an adjunct to the icf model when understanding this phenomenon. keywords: dysphagia; caregiver; third party disability; icf; patient centred care. introduction dysphagia is a swallowing disorder that can result from a variety of pathologies in adults, including strokes, degenerative neurological conditions, head injuries, respiratory conditions as well as head and neck cancers, to name a few (cichero 2006). if dysphagia remains undiagnosed or poorly managed, it can result in severe consequences for the person, including dehydration, malnutrition and aspiration pneumonia, all of which can result in death (kertscher et al. 2014). in a setting such as south africa where the majority of the population relies heavily on the under-resourced public healthcare setting, avoiding negative consequences is vital to ensure a reduced hospital stay (coutt & solomon 2020). this also implies that the management of dysphagia at home also needs to be managed adequately by the family. there are currently no epidemiological data on the prevalence of dysphagia in south africa. this is possibly because of dysphagia being heterogeneous in nature. based on the south african quadruple burden of disease profile, non-communicable diseases leading to stroke as well as trauma-related injuries are significantly high in this context (pillay-van wyk et al. 2016; who 2011). a recent study confirmed that stroke is one of the top 10 causes of death in south africa with over 25 000 annual deaths reported (ranganai & matizirofa 2020). another study in the province of kwa-zulu natal indicated a high incidence of traumatic brain injury and the resources in place to manage these individuals are inadequate (jerome et al. 2017). from these data, it can be assumed that the resultant dysphagia present in this population would be high. although the management of dysphagia requires a multidisciplinary team (mdt), the speech-language pathologist (slp) is often the case manager. in south africa, where there is a high patient-to-slp ratio (pillay et al. 2020), the slp will manage these individuals at both an inand out-patient level. people who have been successfully discharged from the hospital will require their families to manage their dysphagia at home with the assistance of the slp and other members of the mdt. this has some important implications, as a study by coutt and solomon (2020) highlighted that caregivers of adults with dysphagia do experience third-party disability (tpd) when managing dysphagia at home. third-party disability is defined as an able-bodied caregiver experiencing a ‘disability’ as a result of caring for a significant other (nund et al. 2014). third-party disability has been researched in people with aphasia (grawburg et al. 2013) as well as hearing loss (scarinci et al. 2009), but there is little known about this phenomenon in relation to caregivers’ managing adults with dysphagia specifically. according to scarinci et al. (2009), the majority of caregivers experienced difficulties with participation in certain activities both at home and socially. this was supported in the one study in this area by nund et al. (2014) that looked at tpd in caregivers of those adults with dysphagia resulting from head and neck cancers. another study by grawburg et al. (2013) found that there were limited data on this matter, which impacted on the understanding of tpd of caregivers with adults with aphasia. a local study conducted by coutts and solomon (2020), assessing the use of modified diets by caregivers at home in the south african context, their findings revealed despite not looking at tpd specifically, that caregivers have participation, environmental as well as personal factors affected. this significantly impacts on their daily functioning such as their ability to work and earn a living. third-party disability, when referring to those studies above, has also predominantly been researched in economically developed countries, which has limitations when understanding the impact of tpd on caregivers in a setting such as south africa. this is important as the majority of south africans live below the poverty line and require the use of public hospital facilities (coovadia et al. 2009; statssa n.d.). the tpd studies mentioned above have utilised the international classification of function and disability (icf) in an attempt to understand this phenomenon. the icf model is used to describe the function of a person with a disability in terms of body structure and function, activities of daily living and participation. it also includes both environmental and personal factors, which can be seen in figure 1. figure 1: international classification of function and disability model. therefore, this study chose to use the icf model as a means for collecting and analysing the data. the aim of this study was, therefore, to describe how family members experience tpd when caring for adults with a dysphagia in johannesburg. research method and design this was a descriptive qualitative study using phenomenological principles as the study aimed to describe the experiences of family caregivers looking after other family members with dysphagia. once consent was obtained from each abovementioned party, full ethical clearance was granted and data collection could commence. sites were various government clinics around johannesburg. after ethical approval from the university of the witwatersrand, data collection commenced. the researchers ensured that all ethical principles such as confidentiality and anonymity were adhered. there was also a distress protocol put in place. the researcher used purposive sampling to obtain the first participant; thereafter, convenience sampling was used to recruit further four adult caregiver participants. the researcher contacted the clinics in the area and made the slps aware of the study. the clinic slps then informed potential participants who then voluntarily contacted the researcher if they showed interest to participate. participants were included if they were over 18 years and needed to be the primary (main) caregiver. participants needed to be proficient in english verbally as well as to be able to read and write in english because of the nature of the data collection tools. this was asked by the researcher prior to starting the data collection. the authors acknowledge that the inclusion criteria may have limited the type of data obtained from caregivers based on the inclusion criteria. this is important to consider when doing future studies on this topic. this was stated in the information letter that was sent out to the participants prior to them consenting for the study. the researcher also checked this prior to starting data collection with each participant. they were given an information sheet prior to the study, and if they chose to partake, they were given a consent form. there were three data sources for triangulation purposes. the same participants were used for all the three sets of data collection and followed the same recruitment strategy. these were, namely, the adult carer-quality of life (ac-qol), the semi-structured interviews and the reflexive journal. the participants first answered questions from the ac-qol questionnaire (elwick et al. 2010). the results from the ac-qol were used to inform the drafting of the interview questions. the questions that had the most weighting, that is the most significant, were included in the interview. this was determined by the questions that received the highest values from the participants. the aspects from the ac-qol that were predominantly used in the interviews were support for caring, caring choice, caring stress, money matters and ability to care. following this, individual semi-structured interviews were conducted by the researcher. the research was approved by the ethics committee for the use of an online platform to conduct the interviews in order to accommodate the coronavirus disease 2019 (covid-19) lockdown-level restrictions at the time of data collection. only one platform was used, which was zoom. the audio from the interviews was recorded and then later transcribed by a research assistant. the interviews were conducted in english. a pilot study was conducted with participant 1 to ensure that the process of the data collection was in alignment with the aim of the study and that the data collection tools were correct. participant 1 was a 49-year-old man who is the husband of a person with dysphagia. he is the full-time caregiver. the dysphagia and other behavioural complications of the individual were because of a head injury. a limitation was that because of the small number of recruited participants, the pilot study could only be conducted on one caregiver. no changes to the questions for the interview were deemed necessary as the researcher was able to obtain adequate data. the length of the interview was deemed appropriate, and the participant was able to respond to each question appropriately, so no rephrasing was needed. the results from the pilot study were used in the main data analysis. for the larger study, the researcher also used a reflexive journal during the data collection process for debriefing purposes and to ensure that her bias was not imposed on the data analysis as part of the rigour process. a research assistant, who was trained by the researcher, was used in the transcriptions to ensure that there was no confirmation bias and that the transcriptions were captured verbatim. the researcher and research assistant checked the transcription for accuracy and confirmability. data were then analysed thematically using a top-down approach based on the aspects from the ac-qol questionnaire and the icf model that were used in the interviews and subsequent data analysis. the methodology as set out by braun and clarke (2006) was used for the data analysis as well as those on analysing data for a phenomenological approach in health care, which aims to describe a phenomenon, and in the case of this study, it was to describe the experiences of caregivers (priest 2002). table 1 describes the participants who participated in this study. table 1: description of participants. ethical considerations this study was approved by the university of the witwatersrand’s human research ethics committee (hrec). the ethics application was submitted to the university’s ethics committee, which allocated the researchers’ provisional acceptance to conduct the study pending site approval. this provisional ethics letter was then sent to each site together with the proposal and consent forms. permission to conduct the study was requested from the department of health as well as the managers and head of the speech pathology departments at each site. results all participants were caregivers to people with both oral and pharyngeal phases of dysphagia that resulted in dietary modifications at home. table 2 describes the diet modifications that were in place at the time of the interviews. table 2: diet modifications that were being used at home. these diet modifications were important to describe as it also contextualises the results. this shows that all family members had to adjust the diet for the adult with dysphagia, which would be separate from the rest of the family. this would require time and other resources. the results from the interview were analysed using the aspects of the icf framework. the international classification of function and disability model and third-party disability table 3 depicts how tpd impacted the caregivers according to the themes set out by the icf framework. the icf is the framework that has been used to understand and describe tpd and was, therefore, initially used in this study to analyse the data. the themes not relating directly to the icf framework will be discussed separately. table 3: findings from participants relating to the international classification of function and disability model (n = 5). it is evident that all of the participants experienced difficulties with the icf aspects. the most predominant theme is the impact on activities and participation of the caregivers as well as environmental factors. the international classification of function and disability factors body structure only one participant experienced weight loss, which was stress induced. during the interview, he stated ‘too much, i even lost weight’ (participant 3). this appears to be a novel finding and a significant one that will be discussed below. despite it only being one participant, these findings need to be considered on a larger scale as weight loss does have further health implications. body function three out of the five caregivers reported that sleep patterns were interrupted because of the person requiring increased attention both day and night. this resulted in significant fatigue. in the interview, participant 1 reported that he would be required to wake up every 2 h to monitor the individual but would find it difficult as seen in the quote, ‘so at night, it even become more stressful because that’s the time when you lose track of time and you don’t watch the patient as you’re supposed to’ (participant 1). another participant stated, in the interview, about a cause for the change in his sleeping pattern ‘yes, often because i am worried about her’ (participant 3). participant 5 reported that she was unable to get adequate sleep as seen by ‘i wasn’t sleeping enough’ (participant 5). this lack of sleep can have other negative health consequences for the caregivers. this lack of sleep is also interlinked with personal factors, such as the emotional state of the caregiver, which will be explored below. this is not directly linked to their dysphagia management and the constant risk of aspiration but being a caregiver in general. emotional factors were seen to be experienced in three out of the five participants in this study. the emotions that were experienced by family members included stress, frustration, worry, concern, depression and fear. participant 1 described the experience of caring for the individual as ‘a roller coaster of emotions’ (participant 1). for this participant, he noted how often he feels stressed, and this was related to the generalised care, which included feeding and other requirements such as maintaining personal hygiene for the person, providing medication, monitoring her temperature, percutaneous endoscopic gastrostomy (peg) tube and tracheostomy care. because of this, the theme was included in the interview for further discussion and analysis. he further supported this with the statement ‘… you constantly stressed out because you constantly caring for that person’ (participant 1). participant 3 was different and related specifically to providing care while eating as in the interview he stated, ‘i don’t feel safe around her because anything can happen when she is eating …’ (participant 3). this was in relation to the high risk of aspiration as seen by ‘… because the food doesn’t go through her throat, it goes through her vocal cords’ (participant 3). in the interview, participant 5 reported that she would constantly worry about her sister during the night. she stated ‘i had restless nights because here i am worried about her, her wellbeing’ (participant 5). this worrying is related to her eating and fear of aspiration and general care. this concern was also experienced when their loved ones either did not want to eat or take medication, as seen in the following quotes. ‘i not worry too much, only when he not eat and when he sick’ (participant 4); ‘no, it concerned me if he didn’t eat’ (participant 2) and ‘a lot of the time, when she didn’t wanna take her pills’ (participant 5). these emotional stresses of the caregivers are linked to other aspects such as poor sleeping patterns as well as limiting their social activities and participation in other activities. however, participant 3 reported that their emotional state did get better with time as seen by the quote ‘only at the beginning, i felt very frustrated but then i got better used to her’ (participant 3). this is perhaps important to note for the mdt when counselling caregivers. although caregivers did experience concerns under body function, it is not predominant and often interlinked with other factors, such as psychological and emotional, which the icf does not directly nor specifically account for. activities and participation the following aspects of activity and participation were reported in the participants according to the icf model, as shown in figure 2. figure 2: sub-themes identified under activities and participation. it is evident from the diagram that the sub-themes do affect each other, which is often not reported on in the icf framework. each subtheme will be discussed individually, and the possible linkages will be explained. communication there are two separate aspects related to communication that emerged from this study. the first is how communication is affected in relation to interactions with family members as well as socially in terms of reflecting on their challenges as a caregiver. this was because of two factors, namely gender and religion. participant 1 stated ‘as a male and also coming from a muslim perspective, you tend to keep these things to yourself. you don’t ask for help …’ (participant 1). this difficulty with health-seeking behaviours of caregivers is a new finding in terms of its impact of tpd and needs to be addressed by all members of the healthcare team, especially when taking person-centred care into account (santana et al. 2018). it is evident that personal factors, such as gender and religion, can clearly have an impact on other aspects, which have not been addressed in current models. this requires attention. the other impacting factor on communication was the ability of the loved one to communicate effectively with the caregiver. this creates frustration as seen in the quote from participant 3 ‘i feel like i am stupid because i am explaining the same things over again’ (participant 3). this is not a novel finding but is something that treating healthcare professionals need to counsel caregivers about and be aware of in their management plan. activities of daily living two out of five participants reported experiencing difficulties in this area. caregivers would complete their basic tasks, such as personal hygiene and eating, and then, the rest of the day was used to assist their loved one. participant 1 stated, ‘you constantly caring for that person, so you neglect your personal issues, even your personal hygiene’ (participant 1) and ‘the most important thing you end up neglecting is eating. you stop eating or if you do, you eat very little’ (participant 1). participant 3 echoed these concerns by stating ‘… coz everything i need to do for me, i need to make it snappy because you can’t leave her for too long’ (participant 3). three out of the five participants reported that their ability to do grocery shopping was impacted upon. often, they needed to reply on other people to assist them as stated by participant 1 ‘… but you know in terms of going to the shopping centre, i would just hand that to someone else’ (participant 1) and participant 3, ‘yes coz i can’t even go for fifteen minutes, even to go to the tuckshop because you need to buy fast’ (participant 3). participant 5 also reported a sense of urgency when shopping as she stated, ‘i will go maybe just in and out you know getting something and back’ (participant 5). in terms of chores, three of the five participants reported having difficulties with this. participant 1 was unable to afford a domestic worker, as they were now a full-time caregiver as seen in the quote ‘basically got a patient in the room that is basically from a financial expenses is draining. you know you don’t have a stay in maid’ (participant 1). participant 3 reported an inability to clean the house, ‘i can’t even clean the house because i need to watch her consistent and see if she’s choking or not’ (participant 3). whereas participant 5 was only able to do what was necessary, ‘the only house chores i cared about was to make up my bed and cleaning the small space that i am in’ (participant 5). these findings are important as this will have repercussions on the quality of life (qol) of the caregivers and could result in more emotional distress because of an increase in caregiver burden (namasivayam-macdonald & shune 2018). the impact of caregivers having an inability to participate in basic household functions links significantly to other emotional factors, such as stress and anxiety. this can then impact on their ability for them to see themselves as a ‘good’ caregiver. three of the five participants mentioned that meal preparation was affected for them. participant 1 indicated that he struggled with maintaining peg feeds in the beginning, but this improved with time. he also stated that when the covid-19 pandemic started, people were less inclined to provide his family with support for general caring and assistance, which included meal preparation ‘… there was a day where it was plentiful and there was a day where there was basically nothing’ (participant 1), which made the task of being a caregiver much harder. because of having to prepare a modified diet, this increased the costs for meal preparation, ‘we don’t usually buy the groceries that we used to buy you see. some other things are added on the list and the money increased you see’ (participant 1). the impact of covid-19 will also be addressed later as a separate factor. participant 3 indicated that he was required to prepare two meals, which were challenging as seen in the statement, ‘… coz when i’m cooking, i have to make two meals. one for me and separate for her’ (participant 3). whereas participant 5 did not have difficulty with preparing two meals but rather it was a time factor for her ‘it really didn’t matter like i was just cooking because people were hungry, they needed to eat’ (participant 5) and ‘we had a blender, we would cook vegetables for example, and afterwards we would just blend them and add a bit of water to become softer for us to feed her.’ (participant 3) the aspects of time and assistance need to be considered when implementing home programs for adults with dysphagia and their families. leisure activities four of the five participants indicated that their social interactions had been impacted upon. participant 1 avoided social gatherings, as he wanted to avoid people who were seen as ‘sympathising’ (participant 1) and felt obligated to assist him. he described his social life as ‘out the window’ (participant 1). participant 3 never went anywhere as they felt that they were unable to leave their loved one at home unattended. ‘ha friends, i don’t go there anymore coz yoh it’s going to be difficult to leave her at home’ (participant 3). participant 5 did not want to socialise anymore, ‘i just wanted to be in my corner on my own just to deal with this. like it affected my social life more than anything’ (participant 5). three of the five participants were unable to partake in leisure activities like they did before. this was supported in a statement made by participants 1 and 3, ‘it affected it 100%. there was absolutely no leisure, no pleasure. we were all just sitting out of concern’ (participant 1). ‘i can’t even do fun activities anymore. i need to be with her 24/7’ (participant 3). in the interview, participant 5 indicated that partaking in leisure activities ‘was a luxury for me’ (participant 5). these are significant findings that can hinder the optimal functioning of the caregiver and relate to other factors such as emotional distress. participant 4 was a bit different in that they did not socialise because they felt that people in social settings did not understand the behaviours and feeding methods of their loved one ‘sometimes i don’t go anywhere because i know people don’t like how he acts or don’t understand’ (participant 4). all of these different reasons for not wanting to socialise need to be acknowledged and addressed by team members when implementing person-centred care. this can also have an impact on the emotional status of the caregiver. occupational and educational responsibilities three of the five participants reported that they were unable to fulfil their occupational or educational responsibilities since being a full-time caregiver. participant 1 stated ‘i wasn’t doing 80% of my job …’ (participant 1), which indicates how negatively his job was impacted by. participant 3 was unemployed but was unable to attend job interviews because of caregiver responsibilities. he also wanted to attend school again but mentioned ‘again, i want to go to school, i can’t’ (participant 3). these participants also indicated that they were unable to fulfil their jobs and educational tasks, which impacted on them negatively. for participant 5 who had a job and was studying, in the interview, she stated, ‘if i go to work and do what i needed to do and then i’m out’ (participant 5), meaning that she was always required to be on leave. she also stated that she was failing certain aspects of her course. these are significant factors that caregivers need to be counselled on. environmental and personal factors there were six themes that emerged under environmental and personal factors during the data analysis. this can be seen in figure 3, and each theme will be discussed individually. figure 3: sub-themes under environmental and contextual factors. finances this was a significant theme as three of the five participants reported having had their financial status affected. participant 1 had medical aid, but was burdened when healthcare professional costs were not covered by this service, he stated, ‘it drained me totally’ (participant 1). he described it as ‘it left me actually in a deficit but it was required’ (participant 1). participant 3 was unemployed as he described his situation as ‘it costs us a lot, we don’t work and we have to look after her’ (participant 3), and the same feelings shared by participant 5, ‘yes, yes, yes it did’ (participant 5), affect them financially as these adults were on a modified diet. this theme links to that of emotional stress and also impacts on the caregivers’ qol. these circumstances need to be considered by all members of the healthcare team when addressing family needs for at-home management. family support and roles participant 5 was the only participant to indicate the shift in family roles since becoming a caregiver. he said ‘you now need to play mother and father’ (participant 5). these personal adjustments can be difficult. three of the five participants always felt that their life was on hold since becoming a caregiver, because they felt a sense of responsibility in needing to take care of them: ‘so everything that i did, i was mindful of my time all the time. because i need to be there, i need to look after her, i need to see how she is doing.’ (participant 5) and ‘so i couldn’t leave because i was feeling like i am abandoning her somehow’ (participant 5). some of the caregivers felt that this situation was unexpected and ‘forced’ on them: ‘the reason why, this type of thing was basically forced upon me. between the hospital and medical aid. they insisted that the patient be home for palliative care so it was forced on me.’ (participant 1) sometimes, this left caregivers with a feeling of dissatisfaction. despite the hard changes and negative impacts being a caregiver has had on the participants, three of the five caregivers reported experiencing positive aspects related to caregiving. findings revealed that some of the caregivers felt that their relationships with the loved ones were strengthened through this experience, especially as eating is a social and often family-centred event. this is a novel and interesting finding. again, this needs to be accounted for in the counselling process and highlights that there are some positive elements in being a caregiver. personal factors coping strategies: the need for coping strategies was noted among three of the five participants. participant 1 reported that praying was used as a strategy, because ‘… the worst period of my entire life over the past one and a half years’ (participant 1). participant 2 stated that by keeping her family member happy, helped her cope ‘one has to be very cheerful and don’t show that they are a burden’ (participant 2). this was a similar strategy used by participants 3 and 5 as they would hold hands and listen to music with their loved one to keep them happy, ‘but every time i would hold her hand she would hold it back and squeeze it. that gave me courage and strength to want to see her healed’ (participant 5). by loved ones being happy, caregivers also felt more encouraged. education and counselling: importantly, for healthcare workers, three of the five participants stated that receiving counselling from the healthcare team and having a better understanding of the medical diagnosis were beneficial: ‘for me, it was very difficult in the beginning. but fortunately, before taking her home, you had a nutritionist telling you this is what you need to buy, you know, lentils, you need to buy these types of foods, this, that and the other.’ (participant 1) participant 3 suggested, ‘… maybe taking me to classes to understand the condition and how it works, to understand some other things coz when she’s coughing, i don’t know what to do’ (participant 3). the carryover and counselling that need to be provided by healthcare workers are, therefore, of significance. independent factors coronavirus disease 2019-related factors one participant reported on the impact that the level 5 lockdown had on his ability to take care of his loved one as he was able to work from home: ‘i was just fortunate enough, like i said, this happened during lockdown, i was working from home and i could, i could, you know play between my work and watch over her.’ (participant 1) but that social gatherings were less because of the lockdown restrictions. ‘i basically stayed away from social gatherings. but also, again, the whole episode was in lockdown’ (participant 1). this resulted in loneliness as well as perhaps their ability to seek help from others when preparing meals and for the feeding of the person. these are the experiences from a few caregivers, but the impact of covid-19 on the functioning of families still needs to be explored, because this may have longer-term impacts despite lockdown restrictions mostly being lifted. discussion the findings from this study reveal that caregivers of adults with dysphagia experience tpd predominantly related to difficulties of being able to do activities of daily living for themselves, their household chores and attending social engagements. this study highlighted the stress of being a caregiver and how this hinders their ability to perform other daily activities. the current study highlighted that the emotional and psychological well-being of caregivers is a central theme and thus most other factors branch off of that. this is central for understanding and describing tpd. this correlates with the other studies done in tpd such as those by nund et al. (2016), scarinci et al. (2009) and authors (in press), which related back to the themes of the icf, mainly around activities and participation as well but also including environmental and personal factors. within that, in a context such as south africa, there are multiple complex contextual, environmental as well as cultural factors to consider, as shown in table 3. these factors include aspects such as family dynamics, gender roles as well as family support and religion. the details from this study are novel and need to be explored further. during the data analysis phase as described in the results, the authors found that the icf model underplays certain themes that are relevant for caregivers. the framework does not always highlight the influence that each aspect can have on each other, and it also shows that each factor is represented equally, whereas this study showed that certain factors should be more heavily weighted than others when it comes to tpd. the factors highlighted in this study need to be further explored and described in greater detail than what the icf framework currently offers. these aspects need to be explored further in future research on a larger sample size and in different contexts. the icf model could be used as a generic model to understand tpd, but as this is a complex phenomenon with multiple factors influencing it, a more specific representation to depict this as a possible adjunct to the icf model is required. caregivers’ needs are different from the person who they are caring for, and thus, a different model to the icf is required to fully describe their specific experiences. in order to address the aim of the study of describing experiences of tpd of caregivers, the authors felt that a potential new visual representation was needed, which stemmed from the results of this study. the themes that arose are multifactorial and impact on one another creating complexity. as a result, this study has suggested a potential visual representation in order to demonstrate how tpd presented in this study. this suggested that the visual representation of tpd has also attempted to highlight the connections that these themes have on one another. this representation could be used as part of the icf to augment certain factors or could be used independently. this representation is based on the descriptions of the participant’s experiences. as these findings were based on a small sample size, this representation does require further research to enhance and develop it; however, it is a start in understanding tpd in caregivers of adults with dysphagia in johannesburg. this visual representation can be seen in figure 4. figure 4: suggested visual representation for understanding the impact of third-party disability of family members for adults with dysphagia in an economically developing context. this new visual representation will assist healthcare workers in understanding the impact of tpd on family members in johannesburg. this is important when devising home programs for adults with dysphagia. healthcare workers would need to consider all of the aspects in the figure when considering management strategies for the home environment. it will also be important healthcare workers when counselling caregivers on what to expect upon discharge and when they are settling into a home routine. this is visual framework that has provided new information from which healthcare workers can draw for the above purposes. this can also assist in the referral process to ensure that caregivers receive the necessary support. south africa is a diverse country with multiple factors that can influence the health-seeking behaviours of this population and those factors need to be accounted for (otwombe et al. 2015). these factors are seen in the different coping strategies used by the caregivers and how different cultural and gender factors influenced caregivers’ ability to seek help and ultimately affect their qol as seen in one or two participants in this study (reinhard et al. 2008). byun et al. (2016) stated that caregivers experienced higher levels of stress and anxiety. as seen by the results of this study, as reflected in figure 4, these emotions can be linked to various factors, including sleeping patterns, finance worries, difficulty completing work responsibilities as well as the inability to attend social and leisure activities. in terms of avoiding social activities, this is not uncommon in caregivers as seen by other studies (such as howells et al. 2021; nund et al. 2016; patterson et al. 2013). however, it is important to note the impact that this lack of social interaction can have on the qol of the caregiver. this ultimately will increase the other emotional concerns again. if caregivers are also avoiding activities of leisure, this can negatively impact on their ability to promote their own sense of well-being (oliveira, sousa & orrell 2019). not being able to fulfil work responsibilities can also have negative consequences on the financial status of the family. this is important as adults with dysphagia often require modified diets, which can come with an increase in costs. this was seen in the study by authors (in press). it is of significance for team members to consider the impact of finances when developing a home management plan for people (gardiner et al. 2020). the impact that covid-19 had on south african families, in terms of work and finances, needs to be further explored in relation to tpd as well as the impact of lockdown still has long-lasting effects, especially in terms of employment and finances. however, the importance of caregivers incorporating coping strategies and having adequate counselling from the healthcare team prior to discharge was seen as a positive factor for these caregivers. it is the role of the rehabilitation team to consider person-centred care to ensure effective outcomes and support with the families (reinhard et al. 2008). this aspect is, therefore, incorporated into the visual representation. the limitation of this study is that of the sample size was small, but the findings of this study have provided more detail on tpd for caregivers of adults with dysphagia. however, this new visual representation will allow for future studies on tpd to be more tailored to the specific needs of the caregivers, so that this phenomenon can be better understood. this visual representation does require more input and refinement from more research as this was based on a small sample size in a specific setting. the researchers have, therefore, stipulated that this visual representation needs to be piloted on multiple caregivers in different contexts. as this study stemmed from a larger one, the standardised measure of the ac-qol was used. this was to assist in the methodology and interpretation of the findings from the participants. it can, therefore, be recommended that future studies use this visual representation and possibly a different methodology to further explore these findings. this study was also done with participants who were in the more acute phase of caregiving. the findings from this study also need to be explored in caregivers who have been doing this for a longer time. conclusion third-party disability is a common occurrence in caregivers of adults with dysphagia. this study has shown that tpd has a general negative impact on the qol of these caregivers. the main aspect affected is that around psychological and emotional changes that they experience as a result of doing home caring and management of the disability. this management is related to their general medical condition as well as the dysphagia. caregivers find that there is little time to do daily tasks including work and educational responsibilities. these can lead to financial burdens as rehabilitation strategies can be expensive. however, the importance of counselling by the healthcare team and providing caregivers with education is paramount. previous studies that used the icf framework in an attempt to understand tpd were unable to fully explore all aspects of tpd as the icf framework presents with short comings when focusing on the caregiver specifically. this study, therefore, proposed a newly developed visual representation of tpd that can be piloted in other studies relating to tpd, which includes novel themes and the potential impact that these themes have on each other. future studies need to include caregiver experiences of those in different contexts such as rural areas and those who are not fluent in english and who are not proficient in reading and writing. acknowledgements the authors would like to acknowledge and thank the participants of this study. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions b.s. was responsible for the data collection. k.c. was responsible for the conceptualisation and write up. funding information this 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about poverty in south africa, statistics south africa, viewed 17 october 2019, from http://www.statssa.gov.za/?p=12075. who, 2011, the high burden of injuries in south africa, who, viewed 10 march 2022, from https://pubmed.ncbi.nlm.nih.gov/18026626/. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) susanna f. greyling research unit languages and literature in the south african context, faculty of humanities, north-west university, potchefstroom, south africa suna m. verhoef research unit languages and literature in the south african context, faculty of humanities, north-west university, potchefstroom, south africa pioneer school for the visually impaired, worcester, south africa wilhelm g.d.v. tempelhoff research unit languages and literature in the south african context, faculty of humanities, north-west university, potchefstroom, south africa die virtuele instituut vir afrikaans, pretoria, south africa citation greyling, s.f., verhoef, s.m. & tempelhoff, w.g.d.v., 2025, ‘a braille trail for all: inclusive design in the karoo desert national botanical garden’, african journal of disability 14(0), a1764. https://doi.org/10.4102/ajod.v14i0.1764 original research a braille trail for all: inclusive design in the karoo desert national botanical garden susanna f. greyling, suna m. verhoef, wilhelm g.d.v. tempelhoff received: 30 may 2025; accepted: 30 aug. 2025; published: 17 oct. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: disability-inclusive public green spaces are vital for universal accessibility and for enhancing accessible tourism. integrating multisensory stimuli with information and communication technologies fosters inclusive, sustainable, interactive, and site-specific tourism experiences. objectives: the objective of this article is to present the development of the braille trail in the karoo desert national botanical garden (kdnbg), south africa, highlighting how participatory design, inclusive multisensory gardens and locative literature foster accessible tourism experiences, while addressing gaps in the literature on sensory and wellbeing gardens from a global south perspective. method: a qualitative, practice-based, and participatory approach was adopted, grounded in principles of collaborative, community-based research. semi-structured interviews, guided by a thematic framework, elicited insights from participants directly involved in the project. the authors’ practice-based contributions complemented these findings. results: the design and establishment of the braille trail involved collaboration between garden management and staff, visually impaired persons, service organisations, institutional partners, and creative contributors. this inclusive process ensured that the trail reflected the needs, experiences, and expectations of its intended users. conclusion: the braille trail integrates sensory garden design, accessibility, and diverse communication technologies – including digital platforms and locative literature – while incorporating indigenous elements to enrich visitor experiences. continued community engagement, together with lessons drawn from successes and challenges, provides guidance for sustaining and extending inclusive design in future projects. contribution: this study offers insight into multisensory gardens and accessible tourism in a global south context, demonstrating the application of universal and inclusive design, co-design, slow tourism, accessible communication technologies, and collaborative approaches to create engaging and accessible visitor experiences. keywords: braille trail; accessibility; universal design; sensory design; accessible tourism; information technology; site-specific; locative literature; visually impaired; botanical garden; sensory gardens. introduction over the past century, society has increasingly recognised the positive impact of access to green outdoor spaces, such as gardens, on wellbeing. research shows that gardens can enhance physical health, physical mobility, mental development and emotional growth (de bell et al. 2020; gill 2014; hussein, abidin & omar 2013; hussein, omar & ishak 2016). horticultural therapy emerged early as a field that emphasised the therapeutic value of nature through the development of various garden types – such as wellbeing, learning and multisensory gardens – in settings such as hospitals, rehabilitation centres and special schools for disabled learners (davis 1998; hauk et al. 2018; shoemaker 2014; zajadacz & lubarska 2020). the concept of creating multisensory gardens specifically for persons with visual impairment (vi) is well-established (hussein et al. 2013). more recently, however, multisensory gardens have moved beyond exclusively therapeutical and educational settings into more inclusive and public environments, such as parks and botanical gardens (zajadacz & lubarska 2020). this shift reflects a broader global emphasis on moving away from secluded, specialised spaces towards accessible public environments for persons with disabilities. a key driver of this shift has been the rise of international agendas promoting disability-inclusive development and the rights of persons with disabilities. in september 2015, the 193 member states of the united nations adopted the 2030 agenda, an integrated sustainable progress and development framework (happ & bolla 2022). goal 11.7 of the agenda specifically states that by 2030 there should be universal access to safe, inclusive and accessible, green and public spaces, particularly for women and children, older persons and persons with disabilities (brolan 2016; united nations 2015). the 2030 agenda incrementally builds on the international community’s development and adoption of the united nations convention on the rights of persons with disabilities (united nations 2011). in article 30 (united nations 2011), member states commit to ensuring that persons with disabilities have access to sporting, recreational and tourism venues. by integrating multisensory gardens into public parks and botanical gardens, these spaces can become potential tourism destinations aligned with the principles of accessible tourism. buhalis and darcy (2011) define accessible tourism as: [a] form of tourism that involves collaborative processes between stakeholders that enables people with access requirements, including mobility, vision, hearing and cognitive dimensions of access, to function independently and with equity and dignity through the delivery of universally designed tourism products, services and environments. (p. 10) this definition reflects a whole-of-life approach, highlighting that accessible tourism benefits people of all ages and circumstances. these include persons with permanent or temporary disabilities, older adults, persons with obesity, families with young children, and those working in environments designed to be safer and more socially sustainable (buhalis & darcy 2011:10). accessible tourism is increasingly no longer viewed as a niche concern, as illustrated by the united nations world tourism organization designation of ‘accessible tourism for all – promoting universal accessibility’ as the theme for the international day of tourism in 2016 (ambrose 2022). in south africa, this global emphasis has been echoed in national efforts: the department of tourism hosted a public lecture forum in 2016, where therina wentzel, national director of the national council for persons with physical disabilities in south africa, delivered the keynote address. her presentation focused on strategies to enhance and promote universal accessibility in the south african tourism sector (department of tourism 2016). as accessible tourism is a relatively new field of study, relevant frameworks are still being developed. happ and bolla (2022) propose a new sustainability model that integrates perspectives from tourism, disability studies and special needs education. their model highlights three key priorities: preparing the tourism sector to welcome persons with disabilities; ensuring that destinations adopt strategies tailored to the specific needs of this target group and promoting cross-sectoral cooperation. as they argue, ‘[by] linking tourism and actors from other functional sectors (e.g. mobility providers) a socially sustainable offer can be developed’ (happ & bolla 2022:6). agapito and guerreiro (2023) argue for a framework that includes a participatory approach focusing on multisensory stimuli centred on local resources, combined with virtual and augmented environments. this framework can create accessible and sustainable tourism experiences. agapito and guerreiro (2023) posit that communication technology can be used to optimise multisensory aspects of unique local resources. the significance of this framework is threefold: it strengthens local identities and aids sustainable tourism by involving the community; it promotes experiences deemed authentic considering multiple stakeholders’ perspectives; and it addresses the visitor experience before, during and after the visit to the destination in an accessible manner using smart technologies. to support the development of accessible experiences such as multisensory gardens and braille trails, it is important to incorporate the voices and embodied knowledge of persons with disabilities. this approach aligns with the disability rights principle of ‘nothing about us without us’, which emphasises the importance of involving persons with disabilities in research, policy-making and design (dickson, darcy & schweinsberg 2024). one practical way to realise this principle is through co-design, a collaborative method that brings together diverse stakeholders – including community members, service providers and local authorities – to create innovative products and experiences that are beneficial for all (abat & bhalla 2022:523). given that users have diverse accessibility needs, the recommended design approach is to follow the principles of inclusive design (zajadacz & lubarska 2020). universal design is based on the idea that anything being designed should consider as many types of users as possible from the outset, rather than relying on retrofitted adaptations (darcy & dickson 2009). centring lived experiences of local users, in this case, the bodily experiences of disabled persons, on creating interesting multisensory experiences, on safety (but not to the point of making it boring) and on slowing down, ties in with the international movement towards slow tourism. slow tourism emphasises longer stays and authentic experiences that highlight local nature, culture and heritage (dickinson 2022). it is closely linked to the idea of place attachment and sustainable tourism development. braille trails and multisensory gardens in parks, botanical gardens or nature reserves are designed to make outdoor spaces more accessible and enjoyable for persons with (visual) disabilities, enabling them to experience the natural environment more closely, gain knowledge about it and develop a deeper connection with nature. where botanical gardens are conducive to slow tourism (titus & spencer 2015:1241) facilities such as fragrance gardens and braille trails have an additional slowing effect (lin, huang & ho 2020; özdemir & çelebi 2018). the establishment of a universally accessible braille trail in the karoo desert national botanical garden (kdnbg) exemplifies a participatory initiative that integrates multisensory stimuli drawing on local resources with information and communication technologies (ict) designed to create accessible, sustainable tourism experiences and foster a sense of place. the braille trail itself is a 154-m wheelchair-accessible loop featuring tactile elements and interpretation boards that incorporate braille, text and images. the installation is further enhanced by ict, enabling visitors to scan quick response (qr) codes with a cellphone or similar device to access audio recordings, multilingual site-specific poems and musical interpretations – enriching the sensory experience for all visitors. a universally accessible braille trail can offer meaningful experiences for the local community while also making a broader contribution to accessible tourism. the karoo desert national botanical garden in worcester, located in the breede valley of the western cape, south africa, provides an ideal setting for such a project. as a conservation garden, it spans 11 ha of developed land and 143 ha of natural vegetation, showcasing a wide variety of arid and semi-arid plants (oliver 2010:115). the garden attracts both local and international visitors, including residents from the town and surrounding areas, and serves as a site for training and research. worcester is home to a large community of persons with vi and hosts several institutions that support persons with disabilities. these include the innovation for the blind (formerly the institute for the blind), national institute for the deaf, de la bat school for the deaf, langerug school for learners with learning difficulties and pioneer school for the visually impaired (hereafter pioneer school), which caters to blind, partially sighted, deafblind and multidisabled learners. this article aims to describe the development and establishment of the braille trail, informed by a broader research project exploring the design principles and potential applications of locative literature installations and multisensory gardens. in doing so, it seeks to contribute to strategies for accessible tourism and highlights how south africa can strengthen universal accessibility, while also documenting the project. at the same time, the article situates the braille trail within a wider scholarly context: existing literature on garden design principles that enhance enriched experiences and address specific needs – such as sensory gardens, wellbeing gardens and trails accessible to persons with vi – has largely emerged from the global north. although these principles may have universal applicability – as illustrated in our discussion of the braille trail, where we draw on harries et al. (2023) on wellbeing gardens and zajadacz and lubarska (2020) on sensory gardens for visually impaired users – it remains essential to consider unique local circumstances and challenges. research from a global south perspective is scarce and has primarily focused on school grounds and playgrounds (see masamery et al. 2023; moseley & gibbon 2024; jordaan & falk 2025). furthermore, there is a notable international gap in scholarship on integrating accessible communication technology in sensory gardens (wang 2024). directly transferring technology from one context to another (south to north or north to south) without re-contextualisation can be problematic (rivas velarde et al. 2021:261). against this background, the article seeks to address both gaps by contributing a locally grounded perspective from the global south (see botha & ohajunwa 2024:2) and by exploring the role of accessible communication technology in designing multisensory garden experiences. research methods and design this study contributes to byderhand (close at hand), an ongoing interdisciplinary initiative in the research focus area: languages and literature in the south african context at north-west university. since 2015, the project has undertaken exploratory research into locative literature (site-specific digital literature) as a form of creative expression. beyond practice, it examines the interplay of place, literature, digital technology, sensory engagement, inclusivity and collaborative knowledge production (greyling 2018; greyling, verhoef & tempelhoff 2020; odendaal 2020). the project adopts a qualitative, practice-based, participatory and exploratory approach (heron & reason 1997:275–283), drawing on four interrelated knowledge modalities – experiential, presentational, propositional and practical knowledge – to integrate first-hand experience, creative expression, theory and skills in both research and practice. this approach fosters dynamic interaction among participants and knowledge forms, supporting collaborative, community-focused inquiry (beacon north east 2011:2; greyling et al. 2020:1344). the digital installation in the braille trail forms part of the broader byderhand pioneer project, which also included garden verses and pioneer stories – initiatives developed for the multisensory garden at the pioneer school (greyling et al. 2020). during the project’s conceptualisation, the byderhand team, together with the pioneer school and the kdnbg, explored integrating a digital literature initiative, karoo garden poems, into the planned braille trail. over several years, site visits and follow-up discussions shaped the design solutions – covering content, format, technologies and interfaces – which were first implemented at the pioneer school in 2018 and later adapted for the braille trail in 2022, with additional applications developed in the interim. these elements were incorporated into the trail’s layout and interpretation boards, producing a cohesive, integrated outcome. the authors contributed expertise in project management, creative writing, special needs education and multimedia design, with particular emphasis on locative literature and interface design. building on earlier implementations, the current phase of the byderhand initiative identifies principles for designing inclusive, context-sensitive, and sustainable multisensory gardens and locative literature projects rooted in local environments. it also develops practical and educational guidelines for recreational and learning contexts. using a hybrid approach, the study combines conceptual analysis with experiential insights from the authors’ projects, interviews and documentation, including project planning documents, visual material, design processes, creative work and field notes. it directly addresses the question: which guiding principles support the design of purposeful, sustainable and inclusive multisensory gardens sensitive to local contexts? the participants interviewed for this study constituted the core decision-making team that directed the planning and implementation of the braille trail at the kdnbg. they were selected through purposeful sampling based on inclusion criteria related to their roles and expertise: werner voigt (former curator; since june 2019, curator of kirstenbosch national botanical garden); ricardo riddles (former head horticulturist and curator); lize labuscagne (interpretation officer) and thabang makola (former intern; currently head horticulturist and acting curator). a thematic framework guided the interviews, with key themes including participants’ roles, stakeholder dynamics, design principles, project challenges, the use and impact of the braille trail, educational potential and advice for similar initiatives. while the protocol focused on these predetermined themes, the semi-structured format allowed for in-depth discussion and the emergence of additional insights. semi-structured face-to-face interviews of approximately 30 min each were conducted by author 2 and audio-recorded with participants’ informed consent, including permission to use their names in this article. recordings were transcribed by author 1 and verified by author 2. thematic analysis conducted by author 1 followed braun and clarke’s (2006) reflexive process – familiarisation, coding, theme development, reviewing, naming and reporting – and the authors collaboratively discussed the findings to support a fair, well-rounded and nuanced interpretation. the authors were actively involved in the braille trail project as coordinator of the byderhand project, multimedia designer and special needs educator. although not interviewees, their direct involvement provided experiential insights that complement the empirical data. drawing on their scholarly experience, the authors engaged in ongoing self-reflection on their roles and assumptions, consistent with the participatory inquiry paradigm (heron & reason 1997). in line with participatory research principles, a draft of the article was shared with a key contributor for fact-checking, ensuring fair representation and ethical co-construction of knowledge (birt et al. 2016). in addition to thematic analysis and reflective insights, the evaluation of the braille trail was guided by established sensory and wellbeing garden guidelines, along with universal design and accessibility principles, providing a framework to interpret the data and link empirical findings with practical design outcomes. ethical considerations ethical clearance for the study was granted on 02 august 2024 by the north-west university senate committee for research ethics (nwu-scre), following approval by the ethics committee for language matters (eclm) (reference number: nwu-01104-24-a7). results multidisciplinary perspectives on the braille trail’s design and implementation thematic analysis of the interviews identified key themes central to inclusive design in the braille trail, including collaborative approaches, strategic planning, project management, horticultural and sensory design, and accessible interpretive content. results are presented according to the trail’s ‘layers’, highlighting design challenges and consideration of local features, alongside solutions implemented in consultation with stakeholders. the subsections on digital enhancements and universal interface design are presented within this layered framework, drawing on the authors’ practice-based contributions to complement the interview findings. collaborative approaches: multi-stakeholder involvement the braille trail’s planning and development was a multi-year, collaborative process led by the implementation team of the kdnbg and involving institutional partners, persons with vi, service organisations and creative contributors. while delays arose from challenges such as limited funding, procurement issues, staff turnover and the coronavirus disease 2019 (covid-19) pandemic, the extended timeline also allowed for deeper reflection and broader participation (r. riddles, pers. comm., 20 february 2025; w. voigt, pers. comm., 11 march 2025). this inclusive, iterative approach ensured the trail’s design responded to the diverse needs and experiences of its users. overall project oversight rested with the director of national botanical gardens, whose approval was essential for implementation. the renewal and enhancement of the braille trail aligned with the south african national biodiversity institute (sanbi) annual performance plan targets, embedding the project within broader institutional goals (w. voigt, pers. comm., 11 march 2025). staff at the kdnbg played a central role throughout the project cycle, from conceptualisation to implementation and ongoing maintenance. key contributors included the curator, horticulturist, interpretation officer and gardening staff (r. riddles, pers. comm., 20 february 2025; w. voigt, pers. comm., 11 march 2025). south african national biodiversity institute’s education division contributed to the development of interpretive content and educational signage. the upgraded trail further supports their ongoing outreach programmes, including regular site visits by school groups (w. voigt, pers. comm., 11 march 2025). key external partners included north-west university’s byderhand project and the pioneer school. these collaborators were instrumental in the co-design process, particularly in integrating ict and ensuring the trail addressed the needs of visually impaired users (w. voigt, pers. comm., 11 march 2025). the primary users and beneficiaries are persons with vi – especially learners from the pioneer school – as well as the wider community (w. voigt, pers. comm., 11 march 2025). their active participation, especially in user testing and interface design, was vital to the project’s success. additional contributions came from organisations working with visually impaired persons, including innovation for the blind and pioneer printers. creative collaborators – poets and musicians – contributed to the karoo garden poems, while funders such as the botanical society of south africa (botsoc), the cape winelands district municipality, and the rowland and leta hill trust provided essential financial support (l. labuscagne pers. comm., 26 november 2024). tourism bodies such as worcester tourism further supported the project through facilitation and marketing (l. labuscagne pers. comm., 26 november 2024). strategic planning and design principles the new trail replaced an older version that had largely fallen into disuse. issues with the previous route directly informed the design of the new one. most challenges were practical and hindered navigation, especially for persons with vi. key problems included poorly marked start and end points, deteriorated signage, non-compliant plants and uneven surfaces such as shale, gravel and lawn, making access particularly difficult for visually impaired users and wheelchair users (l. labuscagne pers. comm., 26 november 2024; r. riddles, pers. comm., 20 february 2025; w. voigt, pers. comm., 11 march 2025). in planning the new braille trail, w. voigt (pers. comm., 11 march 2025), then curator of the kdnbg, focused on expanding interpretive content and increasing the trail’s accessibility and appeal to a broader audience. w. voigt (pers. comm., 11 march 2025) outlined several considerations that guided the planning and implementation: accessibility: a primary consideration was ensuring that the trail could be navigated with ease by all users, placing inclusive and user-friendly design at the centre of the project. audience and context: adapting content and format to engage both children and adults. cost: managing budgetary constraints, especially in material choices and digital integration. materials: selecting durable, sustainable and accessible materials for paths and signage. technological integration: exploring the incorporation of smartphone-compatible digital tools to enhance access and experience. trail length and layout: designing a compact, easy-to-navigate route suitable for all visitors. themes and plant selection: the focus broadened to include culturally and socially significant plants, while maintaining an emphasis on karoo-adapted species. project management and site selection riddles, the horticulturist responsible for managing the project (r. riddles, pers. comm., 20 february 2025), oversaw tasks including gathering information on the project scope, planning the trail and its layout, and selecting suitable plants. during the planning of the new trail, an initial location was identified, and the planning and budgeting process commenced. however, it gradually became evident that this site was unsuitable for the proposed route. the path would have followed a slope that was overly steep, with inclines and declines rendering it inaccessible to wheelchair users. budgetary constraints also presented challenges. everlasting decking – a durable, wood-like plastic material – was considered for its longevity, but its high cost raised concerns. in addition, the terrain required the construction of a small bridge, further increasing the overall expense. it was subsequently decided to develop the trail alongside the new environmental education centre, which was under construction. this terrain – a relatively level area of natural vegetation – simplified the layout and construction of the path, significantly improved accessibility, helped to reduce costs and allowed for greater creativity (r. riddles, pers. comm., 20 february 2025). as part of the project planning, riddles conducted research by visiting various local braille trails and facilities and familiarised himself with international standards. experts were also consulted, including innovation for the blind and the orientation and mobility specialists at the pioneer school (r. riddles, pers. comm., 20 february 2025). horticultural design and sensory landscaping thabang makola, a sanbi-funded postgraduate student at the kdnbg, designed the trail as part of his horticultural duties (t. makola, pers. comm., 12 march 2025; r. riddles, pers. comm., 20 february 2025). the project was proposed by his then-supervisor, riddles, who envisioned a braille trail accessible to users with disabilities. makola approached the task as a commissioned design, with a brief to base it on a native organism of the succulent karoo – preferably one with a recognisable overhead shape. after considering various options, the endemic dwarf karoo girdled lizard (cordylus minor) was selected as the design model. the layout was designed with consideration of the location, vegetation and biodiversity of both the specific garden section and the larger kdnbg. trail ‘stations’ were identified in collaboration with the implementation team to highlight key features of the karoo garden and its surroundings (l. labuscagne pers. comm., 26 november 2024). the existing vegetation provided a natural setting, while selected plants reinforced thematic or functional aspects of the trail, especially in raised beds. plant choices were guided by the local flora and aimed at multisensory engagement through texture, scent and taste (r. riddles, pers. comm., 20 february 2025). special attention was given to plants of educational value for users with vi, including those with tactile qualities, strong fragrances or bird-attracting properties (t. makola, pers. comm., 12 march 2025). the tactile experience was further enhanced by an exhibit of regional rock types, highlighting the geology that shapes the karoo vegetation. given the high cost of composite decking, paving stones were selected as a cost-effective alternative for the pathway (t. makola, pers. comm., 12 march 2025). community consultation informed key planning decisions. an orientation and mobility specialist from the pioneer school recommended a paving edge – rather than a guide rope – to support navigation with white canes. this decision also addressed hygiene concerns during the covid-19 pandemic by reducing contact with shared surfaces (r. riddles, pers. comm., 20 february 2025). after site clearing, hard landscaping began (t. makola, pers. comm., 12 march 2025). an external contractor laid the paving, while garden staff performed raised bed construction, relocation of rocks, planting, installation of interpretation boards and related tasks (r. riddles, pers. comm., 20 february 2025). yellow-painted tactile pavers were installed to mark points of interest along the route. developing accessible interpretive content the environmental interpreter, lize labuscagne, led the development of the interpretation content, beginning with the selection of themes in consultation with the implementation team. the goal was to introduce visitors to key aspects of the karoo in an accessible and engaging manner (l. labuscagne pers. comm., 26 november 2024). usability was a central consideration, ensuring content that visitors would actively engage with and enjoy. as most visitors are sighted, the interpretation boards also needed to be visually appealing and attention-grabbing. the goal was to tell a compelling story, not just present facts, fostering a sense of connection with the content (l. labuscagne pers. comm., 26 november 2024). given the wealth of available information, the content had to be carefully curated for relevance and clarity (l. labuscagne pers. comm., 26 november 2024; w. voigt, pers. comm., 11 march 2025). a key guideline was to write at a comprehension level suitable for a 12-year-old: clear, concise and engaging (l. labuscagne pers. comm., 26 november 2024). after finalising the themes and design, the implementation team consulted innovation for the blind – a worcester-based non-profit organisation that empowers visually impaired adults and older persons through training, development and specialised care – to further enhance accessibility (l. labuscagne pers. comm., 26 november 2024). the final boards feature a background photo and a bilingual (english and afrikaans) description, reverse-printed on dibond for durability (w. voigt, pers. comm., 11 march 2025). each board includes a bilingual braille panel produced by pioneer printers – a worcester-based non-profit organisation that produces braille, large print and audio formats – as well as a braille-framed qr code linking to digital content. in addition to seven interpretation boards, three orientation boards were planned to guide visitors: an entrance board to present the trail layout, a second to explain the use of qr codes and a final board at the exit to mark the trail’s conclusion. digital enhancements: site-specific poems and interactive media this section draws on the authors’ practice-based contributions, complementing the interview findings. the digital installations along the trail route include 10 site-specific poems – referred to as karootuinverse or karoo garden poems – alongside a functional component: the provision of information in digital format. these installations were developed and implemented by the byderhand project from north-west university, which focuses on the creation and digital installation of site-specific literature. site-specific literature refers to literary works created in response to, and in meaningful connection to, a particular location. these works often draw on the site’s history, geography, culture or sensory qualities, aiming to enhance the visitor’s experience through storytelling, poetry and other narrative forms (farman 2014:3; greyling 2018:208). presented in a digital format, the byderhand project creates layered experiences by combining text, sound, image and video in different ways across contexts. the works are hosted on the byderhand digital platform (www.byderhand.net) and accessed via qr codes and a dedicated interface. a distinctive feature of the byderhand model is the involvement of local writers in content creation. for the karoo garden project, poets with ties to worcester and the surrounding areas were invited to contribute poems that reflect the garden environment, karoo fauna and flora, or the landscapes of the breede and hex river valleys (odendaal 2020:1369). contributors included two poets with vi, william rowland and jacques coetzee, together with diana ferrus, pieter hugo, daniel hugo, suenel bruwer holloway, david kramer, f.w. de jongh, floris a. brown and basie duvenhage. the 10 poems featured in the installation were originally written in afrikaans. for the karoo garden installation, seven were translated into english, two into isixhosa, five into portuguese and six into german. the original poems were read aloud by the poets themselves, while fluent speakers recorded the translations. some also feature musical adaptations contributed by the poets (van der merwe 2020:109). each poem is accompanied by a short poet biography on the interface. visitors can read or listen to the poems via the digital interface while exploring the natural surroundings. universal interface design for accessibility this section draws on the authors’ practice-based contributions, complementing the interview findings. in response to the invitation to contribute site-specific literary installations for the byderhand pioneer project at the pioneer school and the braille trail in the kdnbg, the byderhand platform faced two primary accessibility-related design challenges: enabling users to access locative literature at specific physical locations using their own devices and ensuring intuitive interaction with the graphical user interface. the latest version of the platform – developed in collaboration with staff from the innovation for the blind’s technology centre and pioneer printers – embraces a multilayered, multisensory design, integrating tactile, auditory and visual modes of interaction (greyling et al. 2020:1354). within the field of interaction design, the interface facilitates interaction between humans and computers by means of sensory processes (galitz 2007:8). effective human-computer interaction requires an approach that places the user’s goals and expectations as well as cognitive and physical abilities at the core of the interface design process (galitz 2007:8). mainstream interface design typically relies on visual elements such as simplified icons or illustrations, further reinforced by the widespread use of touchscreen technology. although often considered tactile, touchscreens still require visual input to operate effectively. this dependence on sight not only marginalises users in the byderhand pioneer context but also risks further excluding a group already underserved by digital design. in response, the project adopted a user-centred design approach that directly involved users throughout the process, avoiding reliance on designer assumptions. user-centred design empowers users to participate in key decisions, raise usability concerns and suggest solutions grounded in their lived experience (abras, maloney-krichmar & preece 2004:10). philip crouse and aydienne britz, instructors at innovation for the blind’s technology centre and themselves visually impaired, played key roles in the interface design process. as accessibility experts, they offered crucial insight into how visually impaired users experience and interact with technology. through exploratory conversations, prototyping, user testing, iterative refinement and collaborative evaluation, the design team deepened their understanding of user needs and developed practical solutions to enhance accessibility (greyling et al. 2020:1355). testing revealed that diverse interaction modes were required to accommodate users differing in vision and confidence levels. for instance, a partially sighted user might benefit from high contrast and large fonts, while a user with very low vision might rely entirely on audio. cognitive differences, emotional factors and varying levels of technological proficiency further highlighted the diversity of needs. because universal design principles were embedded from the start, the team was well-positioned to build an inclusive and adaptive platform (carr et al. 2013:2). elzaan hendriksz from pioneer printers played a key role in the design process, bringing extensive expertise in braille and accessible signage. her collaboration – together with input from both sighted and visually impaired staff at pioneer printers – was crucial in developing tactile and print-based solutions for accessing the locative literature. in both cases, collaboration with community stakeholders through co-design, testing and group discussions provided essential insights that guided the design process and shaped the final product: a multilayered, accessible interface. the interface was designed as a sequence of layered interactions: tactile interface and access point: the project uses qr codes to grant users access to locative literature on their mobile phones. because qr codes must be scanned with a device’s camera, they typically require visual interaction. to make this critical step more accessible, each qr code is framed with braille, and clear instructions are provided on how to scan it. qr codes are positioned so that when a user places their phone flat on the signage, the camera aligns with the code. users are instructed to slowly lift the phone until the qr code is scanned, confirmed by an audio cue, screen-reader notification or vibration. after scanning, users enter the main navigation screen, where literature is available in multiple formats and translations. the interface allows for adjustments in contrast and font size, making it adaptable to different degrees of visual acuity. for users reliant on audio interaction, the platform is compatible with screen readers. all interactive elements are tagged using html (hypertext markup language) and aria (accessible rich internet applications), ensuring that screen readers provide meaningful context and navigational cues. this multilayered interface approach was also used to make the content of the interpretation boards accessible to users. the recordings for this component of the project were performed by the in-house recording studio at pioneer printers. learners from the pioneer school were actively involved in developing the multilayered interface and became familiar with the technology through their engagement with the byderhand pioneer installation in the school’s multisensory garden. they also participated in evaluating the braille trail prior to its official launch. discussion building on the results, this section reflects on the braille trail as an inclusive, integrated trail, showing how its diverse features and layers converge, incorporate indigenous elements and shape potential visitor experiences. framed by sensory and wellbeing garden guidelines and accessibility principles, the discussion examines successes, challenges and lessons for future inclusive garden projects, organised into three subsections: evaluation of sensory and wellbeing garden features, operational considerations and sustainability, and recognition, reception and use. evaluating the braille trail through the lens of sensory and wellbeing garden guidelines in their systematic review of design recommendations for wellbeing gardens, harries et al. (2023) identified six key principles: accessibility, wayfinding, spatial organisation, variety in planting, inclusion of cultural artefacts and the fostering of serenity. in addition to these guidelines, it is essential to consider the specific location and climate of the garden, as well as its purpose and intended users. maintenance and environmental sustainability also play a vital role in ensuring long-term success (harries et al. 2023:196; krzeptowska-moszkowicz, moszkowicz & porada 2021:12). these principles are equally relevant to other forms of applied gardens, including sensory gardens and braille trails. according to zajadacz and lubarska (2020:29), sensory gardens designed for persons with vi should be purposefully created as coherent, enclosed spaces that are clearly distinct from their surroundings. these gardens should stimulate all the senses, emphasise non-visual experiences, and incorporate elements beyond vegetation to fully engage visitors. the effectiveness of such features depends on a foundational level of accessibility. safety and ease of orientation are particularly important for persons with vi, for whom comfort and security are essential during garden visits (zajadacz & lubarska 2020:29). in the discussion that follows, these guidelines, together with other relevant design principles, serve as a framework for examining how the braille trail seeks to create a safe and welcoming environment through multisensory experience design and inclusive opportunities for exploration. accessibility involves multiple dimensions, including the garden’s physical location and how easily people of differing abilities can access and navigate it (harries et al. 2023:189). closely linked to this is wayfinding, the process by which individuals orient themselves and move from one location to another, relying on both information gathering and decision-making (hunter 2010:1). as wellbeing gardens should be easy to navigate while encouraging a sense of discovery (harries et al. 2023:191), accessible wayfinding is central to their design. effective wayfinding enhances safety, confidence and user autonomy (harries et al. 2023:192). key features of accessible wayfinding design include visual accessibility, tactile and braille elements, auditory cues, mobility-friendly infrastructure, cognitive accessibility, consistent and predictable layouts, and digital wayfinding tools (symonds 2025). zajadacz and lubarska (2020:32), in their study of sensory gardens for persons with vi, emphasise design elements that support orientation, movement, extended visits and effective communication. many of these elements – spanning sensory garden design, accessibility and wayfinding – are thoughtfully integrated into the braille trail. the braille trail, situated in a designated area of the kdnbg, forms a self-contained loop that begins and ends at the same point. its proximity to the parking area and the environmental education centre enhances overall accessibility (figure 1). figure 1: aerial view of the braille trail and environmental education centre in the karoo desert national botanical garden, worcester, south africa. clear paths and accessible signage support orientation and encourage exploration, particularly in wellbeing gardens (harries et al. 2023). while varied surface textures can enrich sensory engagement, path design should still adhere to universal design principles to ensure accessibility for all users (zajadacz & lubarska 2020:30–32). in addition, uniform surfaces improve safety and reduce perceived threat (harries et al. 2023:190). the braille trail supports spatial orientation through a combination of features: a clearly defined path layout, rounded corners, tactile surface indicators, braille-marked waypoints, audio information, mobile applications and optional human assistance (zajadacz & lubarska 2020:32). a smooth, wheelchair-friendly surface ensures physical access, while bright yellow tactile paving enhances visibility and helps users locate signage, interpretation stations and site-specific poems (figure 2). signage is securely mounted at an accessible height for blind and visually impaired users, while also accommodating wheelchair users (symonds 2025). figure 2: entrance to the braille trail. spatial orientation is supported through features such as a welcome board with trail information, a clearly defined path layout, a raised kerb, rounded corners, yellow tactile surface indicators and braille-marked waypoints. designed to foster independent navigation, the entrance board welcomes and orients visitors to the trail and its features. the braille trail incorporates several techniques commonly used in sensory gardens to communicate with persons with vi (zajadacz & lubarska 2020:32). information is conveyed through multiple modes – images, large print, braille and qr codes that link to audio content via an accessible interface. clear instructions are provided on how to scan the qr codes (figure 3). figure 3: interpretation board providing instructions on scanning the quick response codes. interpretation enriches visitor experiences by fostering deeper, more mindful engagement, supported by variety, personalisation and visitor agency (moscardo 2022:777). this approach is reflected in the interpretation boards, which are written at a 12-year-old reading level to support cognitive accessibility (l. labuscagne pers. comm., 26 november 2024; symonds 2025). bilingual text (english and afrikaans) enhances inclusivity and wayfinding, while digital tools allow for additional content and languages without altering the physical signs. headings such as fascinating animals of the karoo and discover plant textures spark curiosity through references to sound, texture and taste. clear, engaging language invites interaction through simple activities – such as tasting a spekboom (portulacaria afra) leaf or identifying rock types – while the audio guide supports multisensory exploration at one’s own pace (l. labuscagne pers. comm., 26 november 2024) (figure 4). figure 4: ‘geology of the karoo’ interpretation board. the clear, engaging language invites interaction through simple activities, such as identifying rock types. spatial organisation in wellbeing gardens should balance the need for social interaction and privacy by including open areas for gatherings and enclosed spaces that offer a sense of safety and seclusion (harries et al. 2023:195). on the braille trail, this balance is supported through the lizard-inspired design (makoka 2025), which features branching legs that form smaller ‘rooms’ or stopping points. the strategic placement of elevated planting beds and benches within these spaces facilitates both rest and informal social engagement. the use of building stone in the raised beds and constructed walkway contributes to spatial definition and introduces a variety of textures (figure 5). these elements also enhance mobility support and invite users to pause and interact with their surroundings. additional wayfinding features, such as curbs, function as tactile navigational aids (zajadacz & lubarska 2020:32). figure 5: ‘discover plant textures’ station. the use of building stone in the raised beds and constructed walkway contributes to spatial definition and introduces a variety of textures. the two benches along the trail provide comfortable resting spots where visitors can easily use their cellphones and engage with the garden poems, either by reading or listening. these areas also promote informal social interaction, supporting shared experiences of the trail and its poetic content. as harries et al. (2023:191) note, seating placed in both sunny and shaded locations can extend visit duration and encourage use of different parts of a wellbeing garden. while this is a relevant principle, the braille trail currently lacks adequate shaded seating. the intense summer heat and arid climate of the karoo present a challenge in this regard, and, ideally, additional shaded areas should be introduced (r. riddles, pers. comm., 20 february 2025). a key consideration in the design of sensory and wellbeing gardens is the inclusion of diverse planting. these gardens should engage all the senses through thoughtful multisensory planting – incorporating a variety of colours, scents, textures and, where possible, edible plants to create a rich sensory experience (harries et al. 2023:194; krzeptowska-moszkowicz et al. 2021:11). to ensure visitor safety – particularly when encouraging tactile or gustatory interaction – species that are toxic or allergenic should be avoided (gülgün & öztürk 2020:167; harries et al. 2023:194;). the use of indigenous and wild flora can help foster a sense of place and support local biodiversity (harries et al. 2023:194). in a botanical garden context, the inclusion of varied plantings is central to the sensory experience. the braille trail is embedded within the broader landscape of the kdnbg and draws on its abundance of characteristic arid and semi-arid plant species. for the trail’s section on climate change (the challenge of global warming), several quiver tree (aloidendron dichotomum) specimens – including both living trees and a fallen dead specimen – have been grouped to create a striking focal point that reinforces the theme (figure 6). figure 6: quiver tree (aloidendron dichotomum) specimens. gardens with cultural and historical significance can evoke fascination. fostering a sense of culture within the space can deepen users’ emotional connection, enhance their sense of place and contribute to overall wellbeing (harries et al. 2023:190). cultural artefacts – such as water fountains, playful features like natural art or sculptures, and interactive devices – contribute to placemaking by offering multisensory experiences that invite engagement, spark curiosity and encourage personal interpretation. these elements deepen the visitor’s connection to the space (harries et al. 2023:190; krzeptowska-moszkowicz et al. 2021:12). in this context, the poems featured along the braille trail can also be understood as cultural artefacts. presented both as written texts in digital format and audio recordings, the karoo garden poems present 10 unique ‘stories’ or fictional worlds that express a deep appreciation for the distinctive character of the region (van der merwe 2020:108). in her poem, the return, diana ferrus evokes the landscape through sensory and spatial references – sand paths, mountains, fauna and flora, dry air, and the expansive blue sky of the breede valley (figure 7). many readers may identify with the speaker’s reflections in the following excerpt: then you walked up the sandpath stumbled across a stone and fell into a thorny bush you forgot the cactus’s name the mountain slopes hung over the valley, the thorn tree, the flowering aloe glittered red in that sun – the one you knew the dry air filled your lungs and the blue expanse charmed you like in earlier times – nowhere in the world there was such a sky figure 7: the pedestal and digital interface of the poem, die terugkeer [the return], by diana ferrus. the digital elements contribute to an augmented reality experience, adding an immersive, narrative-rich layer to the visitor’s engagement with the place. because site-specific literature relies on the participant’s physical presence, direct, sensory experience gains renewed significance. the digital component deepens this engagement by encouraging heightened awareness, active participation and meaningful interpretation. as the reader’s attention shifts between physical place, sensory and bodily experience, and digital presentation, the encounter invites a slowing down of time and a deepened sense of presence (greyling 2018:155). fostering serenity is also an important quality for restorative garden design. one means to create a serene space is with sound (harries et al. 2023:192). the recordings of poems in different languages, together with musical adaptations, contribute to a subtle, ephemeral soundscape as visitors listen – encouraging imaginative engagement, fostering a meditative atmosphere and inviting visitors to linger. natural sounds – such as running water, rustling grasses and birdsong – can further enhance the soundscape (harries et al. 2023:192) and offer additional opportunities for integration along the braille trail. a cool, shaded seating area, accompanied by a sign inviting visitors to focus on bird and animal sounds, could further enrich the sensory experience (r. riddles, pers. comm., 20 february 2025). the braille trail successfully integrates principles of universal design and sensory garden design to create an inclusive, safe space that welcomes visitors of all ages and circumstances. its carefully curated features (botsoc national 2022) combine to offer engaging multisensory experiences that evoke a poetic encounter with the unique landscape. operational considerations and sustainability for long-term impact beyond enhancing user experience and sensory engagement, the trail’s long-term success also relies on operational considerations, specifically, how effectively its design supports environmental sustainability and low-maintenance upkeep. sustainability in sensory gardens can be evaluated using criteria such as biodiversity preservation, sustainable water use, renewable energy sources and ecofriendly maintenance practices (krzeptowska-moszkowicz et al. 2021). for the braille trail, weekly maintenance is crucial to ensure safety and cleanliness, including clearing paths and maintaining signage (l. labuscagne pers. comm., 26 november 2024). local climate and plant growth patterns must also be considered (r. riddles, pers. comm., 20 february 2025). while the selected plants are adapted to the region’s harsh conditions, they still require care – particularly weeding and watering during dry periods. the raised beds, designed to offer rich sensory experiences, must be replanted annually. to preserve both sensory appeal and visual order, overgrown or faded plants must be replaced as needed (t. makola, pers. comm., 12 march 2025; l. labuscagne pers. comm., 26 november 2024). interpretation boards, braille panels and pedestals are exposed to the elements and will require periodic upkeep. this includes potential repainting or resealing with protective coatings such as epoxy to maintain durability and visual quality (w. voigt, pers. comm., 11 march 2025). digital tools offer real-time updates, multimedia and interactivity that can enhance accessibility and engagement. however, they must be designed with diverse users in mind, including those with limited digital literacy, and consider local circumstances such as infrastructure constraints and the broader socioeconomic context (rivas velarde et al. 2021:253–254). digital components add layers of complexity, as technological change may cause interfaces and software to become outdated or incompatible. long-term usability depends on proactive maintenance, including domain hosting renewals, platform updates and resolution of compatibility issues, all of which require ongoing investment and oversight. sustainable planning should therefore include continuous updates of applications, software and devices to maintain a seamless and inclusive user experience. importantly, sustainability does not imply stasis. content must evolve. this includes updating plantings, signage and digital media – ideally every 5 years or as needed to maintain relevance (w. voigt, pers. comm., 11 march 2025). a clear maintenance and management plan should guide these updates to keep the trail engaging and informative (w. voigt, pers. comm., 11 march 2025). lessons from the braille trail also highlight other critical success factors. a thorough feasibility study and detailed management plan are essential for ensuring long-term viability (w. voigt, pers. comm., 11 march 2025). clearly identifying and engaging a target audience from the outset allows content to be tailored to their needs, particularly when catering to smaller or specialised user groups. ensuring that features are both accessible and meaningful is key (w. voigt, pers. comm., 11 march 2025). operationally, appointing a dedicated interpretation officer, supported by effective administrative structures, can streamline implementation and ongoing management (w. voigt, pers. comm., 11 march 2025). equally important is a genuine passion for the project, which drives commitment, innovation and sustained effort throughout planning, implementation and maintenance (t. makola, pers. comm., 12 march 2025; r. riddles, pers. comm., 20 february 2025; w. voigt, pers. comm., 11 march 2025). finally, sustained community engagement is vital. this includes involving persons with disabilities, older adults and other relevant groups throughout the design and review process to ensure the trail remains inclusive and responsive to user needs (l. labuscagne pers. comm., 26 november 2024). expert endorsement and trail reception at the launch of the braille trail on 30 september 2022, dr william rowland – former president of the world blind union and long-time executive director of the south african national council for the blind – praised the initiative and the diversity of experiences it offers. his poem omdat ek die stadsrumoer (city noise and i) is featured among the garden’s site-specific poems. he stressed the importance of regular maintenance and advised the curator and staff of the botanic garden to remain actively involved in its upkeep (rowland 2022). dr rowland also emphasised the need for consistent marketing and the ongoing involvement of blind and partially sighted advisers. he highlighted the role of organisations such as innovation for the blind in ensuring the trail remains accessible, meaningful and enjoyable for its intended users. the braille trail was positively received in local media. the environmental television programme 50/50, broadcast on sabc 2, featured the trail in a january 2023 segment during which visually impaired participants evaluated the experience and shared their feedback. the digital literature component also attracted international attention for its inclusive, participatory design and innovative use of technology. since its launch, the trail has been used by a variety of groups: learners from the pioneer school for the visually impaired, school groups participating in an environmental education outreach programme and sanbi interns in work-integrated learning (wil), particularly in horticulture and fieldwork (l. labuscagne pers. comm., 26 november 2024; t. makola, pers. comm., 12 march 2025; w. voigt, pers. comm., 11 march 2025). many general visitors also start their garden visit at the trail, drawn by its accessible design and convenient location beside the parking area. the trail is also popular with older adults and families with young children. despite this, usage by blind and visually impaired visitors remains low (l. labuscagne pers. comm., 26 november 2024; t. makola, pers. comm., 12 march 2025), likely because of limited public awareness and ongoing transport challenges. this highlights the need for targeted outreach, improved access and initiatives such as guided group visits. as t. makola (pers. comm., 12 march 2025) notes, a socially sustainable approach would involve collaborating with local disability organisations to co-plan broader use of the trail. it should also consider the many care and education services in worcester and surrounding areas – key communities that could benefit from inclusive outdoor experiences. promoting the trail’s inclusive features within the tourism sector could further strengthen its role as a socially embedded, accessible attraction. conclusion this article outlines the establishment of the braille trail in the kdnbg, south africa, documenting a local initiative and contributing to the broader dialogue on multisensory gardens, locative literature and accessible tourism. in line with the frameworks introduced at the outset, the study demonstrates translation of the principles of universal and inclusive design, co-design and slow tourism into a botanical garden setting, offering enriched and equivalent experiences for a wide range of visitors. situated within the global south context, the study addresses gaps in the literature on sensory and wellbeing gardens, which have largely been shaped by perspectives from the global north. it also highlights the potential of integrating accessible communication technologies into outdoor installations to create multisensory and locative experiences that foster place attachment and broaden participation. the implications are twofold: practically, the braille trail provides a model for other tourism and conservation sites seeking to align with the convention on the rights of persons with disabilities (crpd) and the 2030 agenda by developing universally accessible, inclusive green spaces; theoretically, the study illustrates how accessible tourism frameworks – when combined with locative literature and participatory design – can expand the discourse on sustainable tourism by linking embodied experience, technology and local identity. extending the application of inclusive design models in similar contexts highlights several opportunities for future development. systematic user feedback through surveys or participatory evaluation can guide the adaptation of content, digital technologies and locative literature to diverse audiences. kirstenbosch, harold porter and walter sisulu botanical gardens – venues that attract thousands of visitors – illustrate potential for upscaling, though careful adaptation of information and multilingual resources is needed, and funding and procedural challenges remain. digital tools can enhance accessibility and engagement, but they must consider diverse users, local infrastructure, socioeconomic factors and technological complexity, with ongoing maintenance to ensure long-term usability. because government funding and bureaucracy often delay implementation in south africa, alternative approaches – such as privately funded initiatives or inclusive design in urban green spaces such as public parks – could provide more agile opportunities, with broader relevance for the global south. future research could explore developing and testing educational guidelines that tailor the braille trail and its technologies for school programmes targeting learners with vis. equally important is examining sustainability – how multisensory trails can integrate local flora and fauna to support conservation and biodiversity while enhancing education and visitor wellbeing. finally, inclusive design could be applied to other natural and heritage sites, such as accessibility-friendly educational trails in national parks, where ecological, geotourism or heritage experiences intersect with accessibility. acknowledgements the authors would like to express their sincere gratitude to all participants who generously shared their time, insights and experiences. their deep knowledge, commitment and personal engagement in the planning and implementation of the braille trail have been invaluable to this research. they also thank dr robert mckenzie for his consistent support and final language editing. competing interests the authors were collaborators in the braille trail project and conducted interviews with individuals known to them through this work. while these existing relationships may have influenced rapport and access, the authors affirm that they have no financial or personal interests that inappropriately influenced the analysis or presentation of the research findings. every effort was made to approach the study with reflexivity, transparency and scholarly integrity. the research was funded by north-west university, the authors’ affiliated institution, and no other financial or personal relationships influenced the work. authors’ contributions s.f.g. and w.g.d.v.t. designed and directed the digital components of the braille trail project. s.m.v. and s.f.g. developed the theoretical framework and interview protocol. s.m.v. conducted the interviews, while s.f.g. transcribed, analysed and processed the data, which were reviewed by s.m.v. s.f.g. and s.m.v. wrote the manuscript, with substantial contributions from w.g.d.v.t. all authors discussed the results and commented on the manuscript. assistance with translation and editing was provided by chatgpt (gpt-4-turbo, developed by openai), and all outputs were subsequently reviewed and revised by the authors. funding information the authors received research funding from north-west university to support the implementation of the byderhand installation on the braille trail and publication of this article. data availability the braille trail in the karoo desert national botanical garden is accessible to the public and therefore in the public domain. interview data are stored in a controlled-access repository and are not publicly available, as they are intended for use in future research outputs currently in planning. selected excerpts relevant to this article are available from the corresponding author, s.f.g., upon reasonable request and subject to ethical considerations and data sharing agreements. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors or the publisher. the authors are responsible for this article’s results, findings 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(eds.), death and garden narratives in literature, art, and film: song of death in paradise, pp. 105–125, lexington books, lanham, md. wang, x., 2024, ‘translating gardens into accessible multisensory tours for blind and partially sighted visitors: an exploratory case study’, universal access in the information society 24, 1963–1976. https://doi.org/10.1007/s10209-024-01107-0 zajadacz, a. & lubarska, a., 2020, ‘sensory gardens as places for outdoor recreation adapted to the needs of people with visual impairments’, studia periegetica 30(2), 25–43. https://doi.org/10.5604/01.3001.0014.3170 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) thembi j. katangwe department of pediatrics and child health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa mariana kruger department of pediatrics and child health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa school of psychology, university of kwazulu-natal, pietermaritzburg, south africa ronald van toorn department of pediatrics and child health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa jeanetta van zyl department of pediatrics and child health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa sandile ndlovu department of pediatrics and child health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa regan solomons department of pediatrics and child health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa kirsten a. donald department of pediatrics and child health, faculty of health sciences, university of cape town, cape town, south africa department of neuroscience institute, university of cape town, cape town, south africa citation katangwe, t.j., kruger, m., van toorn, r., van zyl, j., ndlovu, s., solomons, r. et al., 2024, ‘paediatric cerebral palsy in south africa: prevention and care gaps at hospital level’, african journal of disability 13(0), a1449. https://doi.org/10.4102/ajod.v13i0.1449 original research paediatric cerebral palsy in south africa: prevention and care gaps at hospital level thembi j. katangwe, mariana kruger, ronald van toorn, jeanetta van zyl, sandile ndlovu, regan solomons, kirsten a. donald received: 26 apr. 2024; accepted: 27 july 2024; published: 30 oct. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: population-based data show high proportions of severe cases of cerebral palsy (cp) in resource-poor regions such as sub-saharan africa, where most children have potentially preventable risk factors (factors that may increase the likelihood of cp occurrence but can be mitigated through medical interventions). objectives: this study aimed to describe the demographic and clinical profile of children living with cp accessing services at tygerberg hospital over a period of 10 years (2010–2020), identify the potential gaps in care (proportion of individuals in a country requiring but not receiving suboptimal or inadequate care), and comparison with a similar study at the same centre two decades ago. method: this 10-year retrospective study investigated causes and morbidities in children with cp, attending a central hospital in the western cape, south africa. results: a total of 613 children with cp were identified. perinatal causes were predominant, especially in 57.7% (n = 354) of the cohort: perinatal asphyxia (41.1%) and preterm birth (16.6%). postnatal causes constituted 15.2% (n = 93), which included tuberculous meningitis (3.6%) and bacterial meningitis (3.6%). the most common complications were intellectual impairment (61.8%; n = 379); epilepsy (30.8%; n = 189) and visual impairment (54.7%; n = 234). a third of the cohort had severe cp, classified as gross motor function classification system iv and v (38%). conclusion: most of the previously documented main drivers of cp are still present and the implementation of healthcare prevention strategies remains inadequate. contribution: this study provides longitudinal evidence to confirm that cp in a south african setting is associated with a high burden of potentially preventable causes. keywords: cerebral palsy; perinatal asphyxia; prematurity; care gaps; risk factors. introduction globally, cerebral palsy (cp) remains an important cause of motor disability. it has a reported prevalence of more than 4 per 1000 live births in lowand middle-income countries (lmics) (murugasen et al. 2024), compared to 1.6 per 1000 live births in high-income countries (hics) (katangwe et al. 2024). aetiological differences between different regions have been documented for cp. in hics, prematurity associated with extremely low birth weight is most frequently documented, while perinatal asphyxia and kernicterus remain prevalent causes in less-resourced settings (hollung et al. 2018; smithers-sheedy 2016). cerebral palsy registers in hics have proven to be effective in documenting aetiological and phenotypic trends for individuals living with cp as well as providing data that led to the implementation of targeted strategies to improve prenatal, perinatal and postnatal healthcare, with a subsequent decline in cp prevalence (johnson, blair & stanley 2011; morgan et al. 2016). for many hics, besides strengthening neuroprotective strategies for infants born prematurely, the quality of life for children living with cp has also improved (makris, dorstyn & crettenden 2021). data paucity in lmics including south africa, remains a major hindrance in understanding the full spectrum of aetiologies. this directly impacts opportunities for planning preventative strategies alongside motivating for the required health workers and infrastructure to support these approaches. the estimated cp prevalence for south africa is derived from a few studies, which have reported up to 10 per 1000 live births in certain communities (murugasen et al. 2024). in many lmics, perinatal asphyxia, kernicterus and central nervous system (cns) infections (katangwe et al. 2024) remain important cp causes. results from the global lmic cp register confirm differences in aetiology of cp between lmics and hics (mcintyre et al. 2022). while some risk factors are common across contexts, there are important risk factors that are region-specific. examples of such factors prevalent in sub-saharan africa and far less common in hic settings include postnatal infections, such as tuberculous meningitis (tbm) and cerebral malaria (katangwe et al. 2024). a previous study (between 2003 and 2004) of 242 children living with cp and accessing care also at this teaching hospital found a high prevalence of perinatal insults (38% of total cases; predominantly birth asphyxia and prematurity-related complications) (van toorn et al. 2007). of note was also a very high percentage of children with acquired causes of cp (21%), especially secondary to tbm and kernicterus. therefore, it is essential to investigate the cp aetiology over time to ensure the implementation of evidence-based interventions to address preventable causes, especially as there is an increase in the medico-legal litigation against healthcare professionals for cp caused by preventable conditions. this study therefore aims to investigate whether the risk factors and aetiologies of cp have changed over the last two decades and whether the gaps in healthcare access and specific interventions remained. the study objectives were as follows: (1) to describe the socio-demographic characteristics of children living with cp in this cohort; (2) to describe the identified risk factors for cp, ascertain the timing of the brain insult and/or injury where possible and document the physical classification and the motor function by using the gross motor function classification system (gmfcs) level; (3) to describe the most common co-morbidities experienced by children living with cp and to describe the gaps in care for children with cp at this tertiary facility; (4) to compare findings to a study performed in the same setting between 2003 and 2004 (van toorn et al. 2007). research methods and design setting and study population this was a descriptive retrospective cohort study of 613 children (1–13 years of age) living with cp, seen in tertiary-level specialised paediatric developmental and paediatric neurology clinics between january 2010 and december 2020 at tygerberg hospital. the hospital is a large state-funded hospital with 302 secondary and tertiary paediatric beds, serving approximately half of the 2.4 million children requiring healthcare services in the western cape province, south africa (tygerberg hospital 2022). children aged between 1 and 13 years (at the time of the data collection) who accessed paediatric neurology and neurodevelopmental services at the teaching hospital with a confirmed diagnosis of cp were included. the diagnosis fulfilled the ‘surveillance of cerebral palsy in europe and the australian cerebral palsy register’ case definition that includes the following key elements: (1) an injury to the developing brain that is non-reversible and remains non-progressive; (2) it affects movement, posture, and motor function; and (3) the insult or anomaly occurs in a developing brain (surveillance of cerebral palsy in europe [scpe] 2000). data collection routinely collected demographic and outcome data, populated through the enterprise content management system (ecm) of the teaching hospital were reviewed. the children’s families’ socioeconomic stata were deduced from the income classification used by the western cape provincial government of south africa to determine subsidies for public healthcare usage within the province (western cape government 2022). patients are either fully subsidised if they are unemployed or pensioners and partially subsidised according to their earnings. a full breakdown of all healthcare subsidy criteria that is used in the province can be seen in the footnote of table 1. table 1: baseline characteristics of children living with cerebral palsy at tygerberg hospital. data validation was carried out by listing all children attending the neurology and/or neurodevelopment clinics during the study period with their unique hospital record number. the unique hospital record number was thereafter used to access full patient medical records in the provincial patients electronic database named ecm for the western cape province. where there were discrepancies, the paper-based patient records were retrieved for further data collection and validation. clinical documentation in case notes, laboratory and special investigation reports were used to determine cp aetiology. perinatal asphyxia was defined using the 2019 american college of gynaecology (acog) task force criteria on neonatal encephalopathy and cp (the american college of obstetrics and gynaecology 2017, 2019). suggestive history, clinical examination, laboratory findings including auditory brainstem responses and magnetic resonance imaging (mri) were used to confirm chronic bilirubin encephalopathy (kernicterus). polymerase chain reaction (pcr) test results, viral cultures and neuroimaging findings confirmed congenital infection. the presence of at least one of the following (1) intraventricular haemorrhage (ivh) with or without ventriculomegaly on cranial ultrasound scan; (2) the presence of periventricular leukomalacia (pvl) on brain imaging confirmed white matter injury of prematurity. white matter injury of prematurity is an umbrella term of all the pathologies that result in cerebral white matter injury of immature brains in preterm babies. these include germinal matrix haemorrhage-intraventricular haemorrhage (gmh-ivh), pvl, and diffuse white matter injury (lee et al. 2017). definite bacterial meningitis was confirmed by the presence of a positive gram stain and/or positive bacterial culture on cerebrospinal fluid (csf). tuberculous meningitis was identified using the tbm research case definition (marais et al. 2010) comprising clinical, laboratory and radiological components. hypoglycaemic brain injury was confirmed by the presence of the following: plasma csf glucose <2 mmol/l t2-weighted mri images showing bilateral white matter signal intensities in the occipital and parietal lobes. hypovolemic shock was confirmed by the presence of at least two of the following: documented hypotension evidence of fluid resuscitation and inotropic support evidence of ischaemic brain injury on imaging. prenatal causes of cp were classified as non-progressive brain injuries that occurred in the developing brain in utero, anytime from the post-conception period to the period before birth (bax et al. 2005). perinatal causes were non-progressive brain injuries that occurred in the developing brain during birth. postnatal causes were non-progressive brain injuries that occurred after birth (bax et al. 2005). the scpe classification system (scpe 2000) was used to classify cp. the documented topographic classification was used as supporting evidence for classification (bax et al. 2005). motor function was captured using the gmfcs (paulson & vargus-adams 2017). comorbidities were defined as disorders occurring alongside cp but may also occur independently without the cp (hollung et al. 2020). the intellectual level of a child with cp in this cohort was determined by using the molteno developmental screening assessment tool (springer et al. 2022) and from that the developmental quotient (dq) was calculated and recorded for each child in their files. children without information on their dq assessment were categorised in an ‘unknown’ group (brown, parikh & patel 2020). behavioural problems were identified from the narrative text of the hospital notes, bearing in mind challenges in the identification of behaviourally defined conditions in a child with significant neuromotor disability. a child with cp was deemed epileptic if they had two or more unprovoked seizures more than 24 h apart, with or without documented electroencephalogram and neuroimaging results and confirmation of chronic anti-epileptic usage. the vision was categorised into five main groups: normal vision some other visual impairment (strabismus, refractive errors, gaze dysfunction, visual field defects) confirmed cerebral cortical visual impairment normal light perception – can fixate and follow blindness. the hearing was categorised into four main groups: normal hearing some hearing impairment (use of hearing aids, conductive hearing loss, and sensorineural hearing loss) confirmed deafness no data available. allied health services were defined as healthcare professionals excluding medical professionals (ahpcsa 2018). examples of healthcare services include physiotherapy, occupational therapy, speech and language therapy, audiology, nutrition and dietetics, social work and health education. a child was deemed to have accessed allied health services if their records documented attendance of at least four of any of these services regardless of the time frame. statistical strategy descriptive statistics were used to analyse demographic data, clinical subtypes and motor function (gmfcs). categorical variables were reported using absolute values (n) and reciprocal percentages (%), corrected to one decimal point. medians and interquartile ranges (iqrs) were calculated for numerical values, assuming normal distribution. all data were analysed using stata version 16.0 (statacorp 2019). this statistical package was recommended by our statistics expert as it offers improved functions that assist with data cleaning as well as having a wide range of statistical techniques, with advanced features for managing missing data, a commonality in retrospective studies. ethical considerations ethical approval to conduct this study was obtained from the stellenbosch university, health research ethics committee (no. s21/10/195). results a total of 613 children were identified with cp. the median age at study inclusion was 9 years (iqr 6–10 years). most of these children were of school-going age (78.8%; n = 483) (see figure 1). the majority were males (60.4%; n = 370) and the median age of identifying at-risk children for cp was 9 weeks (iqr 3–19 weeks). figure 1: age distribution of children living with cerebral palsy at tygerberg hospital. characteristics of children living with cerebral palsy spastic cp was the most common type of cp in this cohort (60.4%; n = 370), followed by mixed cp type (10.8%; n = 66). within this spastic group, bilateral spastic cp was the predominant cp type (n = 370; 60.4%), with a third having equal involvement of all four limbs (n = 194; 31.6%) and 12.3% (n = 75) having more lower limb involvement. unilateral spastic cp was present in 16.5% (n = 101). some of the other cp types included dystonic cp (4.6%; n = 28), dyskinetic cp (2.4%; n = 15) and ataxic cp (0.5%; n = 3) (table 1). the majority of the cohort had severe motor function, gmfcs iv and v (38.0%; n = 233). the annual income for most of the families in this cohort was < zar100 000 (<usd [united states dollar] 5337) per annum (86.1%; n = 528), with a small proportion (5.9%; n = 36) depending solely on the pension income of grandparents (table 1). causes of cerebral palsy the perinatal period was the most vulnerable time for cp to occur (57.7%; n = 354) in this cohort, with perinatal asphyxia (41.1%; n = 252) and white matter injury of prematurity (16.6%; n = 102) as the important causes. perinatal asphyxia occurred more in boys, with a male-to-female ratio of 1.8:1. bacterial meningitis (3.6%; n = 22), tbm (3.6%; n = 22), postnatal ischaemic episodes (3.1%; n = 19) and kernicterus (2.4%; n = 15) were the top causes of postnatal cp (table 2). table 2: reported cerebral palsy etiological factors at tygerberg hospital. a comparison of cerebral palsy causes in this study with those from the previous study (2003–2004) a previous cp study (2003–2004) conducted at this facility found that white matter of prematurity (17.7%) was the most reported cp risk factor followed by perinatal asphyxia (17.3%). bacterial meningitis contributed 6.2% (15 cases out of 242), while tbm and kernicterus contributed 9.5% and 2.0%, respectively (van toorn et al. 2007). cerebral palsy comorbidities for intellectual impairment, 78.8% (483) of the children had a documented dq score of which 61.8% (n = 379) were deemed to have intellectual impairment. more than a third, namely, 37.7% (n = 231) had severe intellectual impairment. epilepsy was identified in 30.8% (n = 189) of the children while visual impairment was detected in 54.7% (n = 234) of the children. the most important causes of visual impairment in this cohort were a group of visual perception disorders, refractive errors, gaze dysfunctions and visual field defects (29.5%; n = 181). the second important complication was cerebral cortical visual impairment (10.7%; n = 66). overall, 8.0%; n = 49 of the total sample was classified as blind with the following specifically documented causes: congenital cytomegalovirus infection 0.7% (n = 4); structural brain anomalies 2.0% (n = 12); bacterial meningitis 0.3% (n = 2) and tbm 0.1% (n = 1). for those with epilepsy, hypoxic-ischaemic encephalopathy (16.6%; n = 102) was the most documented presumed cause for their epilepsy (table 3). table 3: comorbidities and access to cerebral palsy related healthcare services. access to services occupational therapy (68.8%; n = 422), physiotherapy (27.4%; n = 168) and speech therapy (17.9%; n = 110) were the frequently accessed allied health services. of the 196 children with gmfcs v, 58.7% (n = 115) had mobility assistive devices. wheelchairs with full postural support were the most prescribed assistive devices in this group (13.4%; n = 82). other prescribed assistive devices included wheelchairs that allow independent mobility (1.3%; n = 8) and wheelchairs with flexible postural support (1.1%; n = 7). school-aged children comprised 86.0% (n = 527) of this cohort; however, only 24.9% (n = 131) had schooling information documented in their case notes. the recorded schooling information indicated that 49.6% (n = 65) were not in school, 11.5% (n = 15) were enrolled in mainstream education, while 19.4% (n = 26) were enrolled in schools for learners with special educational needs. of this cohort, 46.2% (n = 30) were on the waiting list for schools for learners with special educational needs, while mere 9.9% (n = 13) were in special care centres (non-profit organisations that care for children with severe disabilities in south africa). discussion to the best of our knowledge, this is the first study in south africa that re-investigated the causes and morbidities of children living with cp after more than a decade. our findings show that the proportion of severe cases of cp remains very high and that the majority of children have potentially preventable risk factors such as perinatal asphyxia, white matter injury of prematurity, kernicterus and bacterial and/or tuberculosis (tb) meningitis. the fact that the main drivers of cp have remained unchanged suggests that healthcare prevention strategies remain inadequate. the estimated prevalence of perinatal asphyxia in south africa ranges from 2.3 to 26.5 per 1000 live births (stofberg et al. 2020). the wide range in cp prevalence can be explained by the complexity of this condition and the numerous diagnostic criteria being utilised. at this institution, the in-born rate for severe neonatal encephalopathy was 5.5/1000 in singleton live-born babies (9/1000 rate for live-born deliveries ≥ 36 weeks) (adams, mason & gebhardt 2022). the ‘saving mothers and babies report on perinatal care’, 2012–2013 & 2017–2019 (national perinatal morbidity and mortality committee 2013, 2019), found that nearly 50% of modifiable factors for perinatal asphyxia are associated with healthcare provider behaviour and that more than 50% of perinatal asphyxia cases occur at the district level (national perinatal morbidity and mortality committee 2013, 2019). potentially modifiable factors include failure to identify foetal distress (with and without foetal monitoring), delay in perinatal referral to a secondary or tertiary hospital, and inappropriate management of prolonged second stage of labour. the world health organization (who) guidelines have recommended 30–75 min as a safe decision to delivery time interval (apako et al. 2023). unfortunately, few studies report the decision to delivery intervals in resource-poor countries and this who-recommended interval is often not achievable. at tygerberg hospital, the average decision to incision was 1 h 40 min. this finding coupled with an average bed occupancy of 102% in the emergency maternity centre (adams et al. 2022) highlights the challenges faced in poorly resourced settings. the hypoxic ischaemic encephalopathy (hie) incidence at this facility is high (adams et al. 2022) when compared to incidences in hics. a denmark neonatal unit reported an incidence of 1.64/1000 live births (garne et al. 2018). however, other lmic neonatal units, nigeria for example, recorded even higher neonatal incidences of hie, 28/1000 live births (ugwu, abedi & ugwu 2012). our study’s findings, therefore, affirm the need to scrutinise the drivers of perinatal asphyxia within tygerberg, especially its referring hospitals and earmark these as possible areas for implementing targeted preventative strategies. in randomised clinical trials, therapeutic hypothermia (th) has been shown to reduce disability in neonates with moderate-to-severe hie in hics (chawla 2024). therapeutic hypothermia has since 2008 become an established mode of therapy at this facility and is currently being offered at most tertiary hospitals in south africa. however, most of the perinatal asphyxia cases are reported at the district level, and cooling is not offered to all asphyxiated neonates because of delayed presentation, equipment unavailability and severe clinical illness. this hinders objective assessments of the intervention’s overall impact. in addition, there is insufficient evidence to recommend th at the district level (i.e., very few studies from resource-poor settings) and currently, its use is restricted to tertiary centres. the institution has seen a 50% improvement in the survival of peri-viable neonates (gestational age 20–26 weeks) (dormohamed & van wyk 2022). the use of non-invasive neonatal ventilation and surfactant administration have immensely contributed to this improved survival rate. therefore, this tertiary hospital is seeing the dual streams of improving the survival of preterm infants, similar to the trends described in hics, while still struggling to prevent perinatal asphyxia, just like many other lmics (ramaswamy et al. 2021). for example, the transport system for getting women with foetal distress into the hospital where they can get appropriate care is poor (gebhardt 2016). this means that although the facilities can provide good care if access to the right kind of care is not timeous (i.e. basic transport infrastructure and early recognition of foetal distress), irreversible brain injury remains a high risk. as such, a relatively low proportion of neonates with perinatal asphyxia may be accessing th. as with the previous study, the overrepresentation (15%) of acquired post-neonatal cp cases is concerning. despite the proven therapeutic benefits of phototherapy for preventing kernicterus, lmic continues to report high rates of avoidable exchange transfusions, as well as bilirubin-induced mortality and neurodevelopmental disorders. interventions implemented at tygerberg hospital include phototherapy and exchange transfusion protocols, training of personnel and innovative technology such as non-invasive transcutaneous bilirubin monitors. the latter became available at this facility and peripheral clinics in 2013 and has alleviated the sampling stress endured by newborns, mitigated iatrogenic anaemia and expedited the turnaround time for obtaining results and providing treatment. tuberculosis is a major health problem in the western cape of south africa, which explain the high contribution of tb meningitis-related cp cases in both studies. unfortunately, the prevalence of childhood tbm at this tertiary facility has remained largely unchanged over the last decade because of social factors such as poverty and overcrowding as well as the negative impact brought about by a global bacillus calmette-guerin (bcg) vaccine shortage and the coronavirus disease-19 (covid-19) pandemic. the median age of flagging babies at high risk of developing cp was 9 weeks. this early identification of at-risk neonates is a result of having obstetric and neonatal units at the same facility that allows for a structured follow-up service (king et al. 2022). the lower proportion of severe cases of cp (gmfcs iv and v; 38.0%) at this facility as compared to other lmics where the proportion of children with gmfcs iv and v motor disability is more commonly over 50% (jahan et al. 2021) may be because of the integrated neonatal, high-risk, and neurology services that allow for early cp diagnosis and follow-up all within the same facility. this is a unique finding for tygerberg hospital as most tertiary centres in lmics have disaggregated neonatal and chronic paediatric follow up services where cp is most likely to be identified. even though tygerberg hospital has had successes in improving neonatal care over the years, other major gaps in healthcare services still exist. firstly, the lack of progress in perinatal care for labouring mothers, evidenced by the persistence of perinatal asphyxia as a cause of cp in this facility for over a decade. secondly, this facility does not offer adequate allied health services for children with cp. our findings show that only 27.4% of these children access physiotherapy at this tertiary facility. the reason behind this low access is likely to be multifactorial, including factors such as the financial burden of transporting non-ambulatory children to the hospital by families, inadequate staffing, high turnover at the facility resulting in sparse appointments and resulting perceived limited effectiveness (narain & mathye 2023). although older children placed in special schools within the province may access in-house therapies at the schools and therefore the overall access to therapies may be slightly higher than we report here, only 10.4% of the children in this cohort were placed in these schools suggesting this as a relatively small potential limitation. thirdly, overall, only 27.0% of children in the total cohort were placed in some form of schooling facility within the province. this study highlights the gap that exists in the provision of education services for children with cp in south africa. even though access to special schooling in south africa is better than in many resource-poor countries (jahan et al. 2021), placing children with disabilities in schools remains a significant challenge because of lengthy waiting lists and limited places in schools in the region. lastly, another gap is the poor access to appropriate mobility assistive devices for children with cp. this study highlighted that even though, almost all the non-ambulatory children (gmfcs iv–v), had a prescribed mobility assistive device, only 52.1% of these children had their seating appropriately addressed with postural wheelchairs. the reasons for this gap include limited availability and accessibility of devices, high costs (e.g., electrical wheelchairs) inadequate assessment and referral procedures as well as limited access to allied specialists services. the rest of the children in this severe category were prescribed other forms of mobility assistive devices. local studies in south africa have identified gaps in the implementation of policies related to these devices, including delays in assessment, referrals, device prescription as well as maintenance (visagie et al. 2022). the findings from this study indicate that the country is facing insufficient healthcare prevention strategies. therefore, to mitigate some of these challenges, there is a need to focus on further improvements in obstetric and neonatal services. to objectively determine and address the main challenges within these crucial service domains, there is a need for the implementation or strengthening of the following specific healthcare prevention strategies: firstly, programmes to prevent preterm labour and provision of adequate care for premature babies; secondly, improved maternal health by ensuring access to prenatal care, nutrition and health education for pregnant woman; thirdly, infectious disease prevention (tb and hiv [human immunodeficiency virus] screening); fourthly, skilled healthcare birth attendance to reduce the risk of birth asphyxia; fifthly, improved postnatal care (th, screening for jaundice, support for new mother); sixthly, healthcare worker training; and lastly, data collection, and research to allow the establishment of a cp registry. this study’s results indicate the western cape province in south africa may still have insufficient healthcare prevention strategies. to mitigate the causes of acquired cp, both obstetric and neonatal services should improve. the western cape department of health should assess the quality of obstetric and neonatal care, and implement strategies to address the identified gaps in healthcare provision. case-control studies within the obstetric and neonatal units should be conducted to identify specific risk factors and patient outcomes to assist in recommendations of targeted cp preventative strategies. health economics studies that assess the effectiveness of the current healthcare system and its long-term cost implications can also better motivate improvements in the current state of the health system so that quality healthcare is offered across the board. this study was biased in many ways by being a retrospective study. firstly, the study was biased towards children with severe cp as the study was conducted at a tertiary facility. as a result, some children with the milder severity cp may have been missed. secondly, only recorded information in the children’s hospital records was considered, as such some information was missing or incomplete. thirdly, there may have been cp classification misclassification because many of the documented clinical classification metrics were reported in the older topographic cp classification system, according to the standard of care at the time. therefore, to mitigate some of these biases, we ensured matching patient identification data from the clinical records in the neurology and neurodevelopmental clinics, physical patient files in store at the clinic as well as the electronic records on ecm. as such, we upheld the currently endorsed scpe cp definition guidelines to re-assign the appropriate physical classification for all the children. we therefore recommend that future studies are prospective and population-based to ensure accurate cp calculation as well as result generalisation. despite these limitations, this study is one of the few reports that has attempted to highlight the gaps in the care offered to children with cp in lmics. in addition, the study has also compared findings to those of a similar study that was done at the institution almost two decades ago, allowing comment on this population over the span of 20 years. conclusion major findings revealed a high proportion of severe cp cases, with 38% classified as gmfcs iv and v. perinatal causes, primarily perinatal asphyxia (41.1%) and preterm birth (16.6%) were predominant, while postnatal causes included tbm and bacterial meningitis. the study concluded that preventable risk factors for cp remain prevalent, indicating insufficient healthcare prevention strategies. it is clear that most of the previously documented main drivers of cp are still present and that implementation of healthcare prevention strategies remains inadequate. therefore, future studies need to be case-control studies that will provide an in-depth understanding of the specific gaps within obstetric and neonatal care to better inform policy and the implementation of targeted cp preventative strategies. acknowledgements the authors would like to acknowledge all the children living with cp who access care at tygerberg hospital and whose data were used anonymously to publish this article. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.j.k. designed the study, collected, cleaned, analysed part of the data, and wrote the article. m.k. critically reviewed the manuscript. r.v.t. designed the study and critically reviewed the article. j.v.z. collected the data. s.n. analysed most of the data. r.s. critically reviewed the article. k.a.d. designed the study and critically reviewed the article. funding information t.j.k. received funding from the department of paediatrics and child health, stellenbosch university, to conduct this study. data availability data are available on reasonable request from the corresponding author, t.j.k. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the 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‘aetiology of cerebral palsy in children presenting at tygerberg hospital’, south african journal of child health 1(2), 74–77, viewed n.d., from http://www.sajch.org.za/index.php/sajch/article/view/47/8. visagie, s.j., maclachlan, m., scheffler, e. & seymour, n., 2022, ‘promoting regional coherence and cohesion amidst multiple assistive technology initiatives in africa’, african journal of disability 11, 1–7. https://doi.org/10.4102/ajod.v11i0.937 western cape government, 2022, subsidised patients, viewed from https://www.westerncape.gov.za/general-publication/western-cape-government-hospital-tariffs-overview?toc_page=3. abstract introduction literature review theoretical framework research methods and design results discussion conclusion acknowledgements references about the author(s) mbulaheni o. maguvhe department of inclusive education, school of educational studies, university of south africa, pretoria, south africa allan mutambo department of inclusive education, school of educational studies, university of south africa, pretoria, south africa citation maguvhe, m.o. & mutambo, a., 2023, ‘a study of inclusive education provision in zambia: curriculum reform’, african journal of disability 12(0), a1067. https://doi.org/10.4102/ajod.v12i0.1067 original research a study of inclusive education provision in zambia: curriculum reform mbulaheni o. maguvhe, allan mutambo received: 05 may 2022; accepted: 04 june 2023; published: 31 july 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the study is conducted to investigate whether curriculum reform for learners with special education needs (sen) is taking place in zambia. objectives: the study objective were to investigate the extent to which curriculum had been reformed to facilitate the inclusion of children with sen in zambia; and determine stakeholders understanding of inclusive education policy, to evaluate the success of an inclusive programme in supporting the full inclusion of learners with sen. method: this study used a mixed method research design which involved data collection in seven provinces of zambia. the researchers employed purposive sampling. the largest number of respondents were sen teachers and administrators. the qualitative data collection tools included semi-structured interviews of individuals and focus groups. the quantitative data came from a questionnaire completed by teachers and supervisors as well as from government documents. the quantitative data were analysed using sofa statistics, while the qualitative data were analysed using atlas-ti 7. results: limited curriculum reform remains one of the main impediments to the implementation of the inclusive policy for children with sen in zambia. conclusion: it is concluded that without curriculum reform the implementation of inclusive education in zambia will be challenging. contribution: there is a dearth of information regarding curriculum reform in zambia. this is one of the studies that is attempting to plug the information gap on curriculum reform. keywords: inclusion; inclusive education; curriculum; curriculum reform; policy implementation; universal design for learning; zambia; special education needs. introduction the inclusion of students with special education needs (sen) continues to be a key issue in the quest for the provision of equitable education for all children (naicker 2007; theoharis & causton 2014). this article is based on a study that investigated the extent to which inclusive education policy for children with disabilities had been implemented in zambia since 1997. the main focus areas of the study were: the understanding of inclusive policy by stakeholders; the success of the inclusive schools’ programme (inspro), curriculum reform to support the inclusion of learners with sen, and the main impediments to the inclusion of children with sen in zambia. the article specifically focuses on the research question: to what extent has the curriculum in zambian inclusive education schools been reformed to facilitate the inclusion of learners with sen? literature review in zambia, the three main educational principles according to educating our future sen policy (1996:67) include a call for a continuum of placements for children with sen, the existence of special schools and the provision of quality education. the above principles as outlined in the unesco (2008:3) definition of inclusion implies that successful and meaningful inclusion should be for the benefit of both those with disabilities and those without (engelbrecht et al. 2016; florian & spratt 2013; kauffman et al. 2018; naicker 2018; polat 2011). current understandings and misunderstandings of what inclusive education should look like critics of inclusion continue to argue that the concept is a source of much confusion among scholars and other stakeholders alike. on one hand, other critics believe that inclusion, its goal and intervention models arise from the need to go beyond the physical integration of learners with sen in regular education to the quality of educational outcomes (hallahan, kauffman & pullen 2012; warnock & norwich 2010). on the other hand, scholars like terzi (2014) is of the view that, for some learners, special education schools is one of the options to meet their needs. cigman (2007) argues that children with sens differ remarkably and ‘one size fits all’ principle should not be applied to them. some prominent detractors of inclusion such as scruggs and mastropieri (1996) and kauffman et al. (2018) have continued to argue that most inclusive practices emphasise social integration to the detriment of the acquisition of content knowledge and skills when the goal of educational programming is not only socialisation but the attainment of meaningful outcomes for all learners. similarly, lindsay (2007:370) claims that inclusion should go beyond mainstream but should include meaningful participation in the education process. to this end, lindsay (2007) proposes learners with special needs should be identified and provided for appropriately. in addition, florian and spratt (2013:121) contend that using the inclusive pedagogy approach entails rejecting the labelling of learners based on ability. they also argue that diversity should be seen as a strength and not as a problem. others suggest that the focus should be not only on the students with disabilities but on all students and then consider how to accommodate those with disabilities into mainstream education (loreman et al. 2014; naicker 2018). hornby (2011) presents the sources of the confusion regarding inclusion and refers to these as ‘inclusion confusions’ (see figure 1). figure 1: issues relating to confusion with inclusion. what figure 1 depicts is that, if the implementers of inclusive education are still confused as highlighted by hornby (2011) then diversity will be seen as a problem and not a strength. confused implementers of inclusive education would still focus on students with disabilities and how to reasonably accommodate them in inclusive education settings (hornby 2011). instead, focus should be on all students with and without disabilities. for inclusive education to be effective, according to hornby (2011), all things should be considered: (1) achievable inclusive education goals (among them not leaving any child behind), (2) identification of needs and support needed based on research evidence, (3) resources, (4) being realistic about what is possible and not possible. curriculum reform curriculum reform to facilitate the inclusion of learners with sen and other marginalised groups of learners generally accompanies many inclusive policy documents. in the zambian case, item ‘vi’ (6) in ‘educating our future’ includes a call to address the need for curricula change to support learners with sen (republic of zambia ministry of education 1996). however, how to develop pedagogy and curricula that will be inclusive and beneficial for all learners is easier said than done (davis & florian 2004:34). the need for curriculum reform is especially challenging because the focus on performance as a marker of success in mainstream education contexts persists. wolfe and hall (2003) have previously argued that inclusion of students with sen necessarily requires redesigning of curriculum and the provision of appropriate classroom adaptations. these adaptations include, but not limited to: (1) seating arrangements, (2) rearrangement of the layout of the classroom, (3) limiting visual clutter on walls, (4) sensory stimulation with soft or noisy music, (5) reduction of noise in a classroom to accommodate learners with visual impairments, (6) controlling lighting to accommodate partially sighted learners and those with autism, (7) adapting furniture by lowering chairs or securing desks and creating slant boards throughout the classroom for writing support, and (8) adapting door handles for learners with orthopaedic impairments, cognitive and/or developmental delays. a focus on improving the participation of learners with sen is less appealing as they are considered to be a liability on high-stakes tests reports (juneja 2018:21). yuen et al. (2019) argue that a common curriculum following the principles of universal design for learning (udl) should allow for teachers to monitor the progress of all the learners. hence, flood and banks (2021) suggest that udl should not lose sight of the importance of monitoring learner outcomes. in this process, mukminin et al. (2019) posit that this access to the curriculum by all learners should include those without sen. however, it is worth noting, as meier and rossi (2020) argue, that udl does not imply a ‘one size fits all’ curriculum document but a programme of learning which removes barriers to learning for all learners so that the curriculum becomes an integral part of the framework. in practice, theoharis and causton (2014) provide some practical steps and considerations to promote efficient and effective curriculum reform and implementation which are: buy-in from different stakeholders; understanding by school stakeholders, including parents, regarding curriculum changes; sufficient time for principals, teachers and parents to implement the new strategies required under the reform; adequate or effective allocation of resources for implementation; continued provision of professional development; and adequate efforts to build school capacity to implement school reform including: school stakeholder’s knowledge of roles and responsibilities, as well as stakeholder’s leadership and skills. curriculum reform has not been at the forefront in the quest for inclusive education. although in the zambian case, all curriculum documents after the first education reforms of 1997 have a specific section relating to equity and inclusion of learners with sen albeit with no details about how to differentiate for exceptionality of learners with disabilities. in our view, education reform calls for a paradigm shift from separate standards, curricular and accountability systems between special education and mainstream education. it is therefore important, as conn and hutt (2020) posit, that all stakeholders are committed to the inclusion of all learners in the curriculum renewal and implementation. they argue that beneficence for all should be the goal through a curriculum that affords multiple pathways to learning. this includes the need for mainstream public schools to be conducive to sen learners and that education must ensure equal access to training, skills development, equal opportunities as well as career paths of all learners. theoretical framework at the heart of this study is a focus on the development of children with sen through the implementation of inclusive education policy in zambia. this entails using a theoretical framework that can link the realms of philosophy, policy and practice (houston 2017; onwuegbuzie, collins & frels 2013). bronfenbrenner (1992) believed that learning is a function of social interactions in a system of embedded structures (lau & ng 2014; walker & pattison 2016). in his earliest conceptualisation of the ecological system model, bronfenbrenner presented four nested environmental levels in which a developing child exists and interacts with others – the microsystem, the mesosystem, the exosystem and the macrosystem (bronfenbrenner 1979, 1992). to this end, bronfenbrenner’s (1979) ecological systems model is used since it makes the best fit. figure 2 shows how the ecological model is applied to the implementation of inclusive education policy in zambia. figure 2: ecological systems model applied to implementation of inclusive education policy for children with special education needs in zambia. the focus on curriculum reform in zambia entails that the teachers and school administrators in the mesosystem who are at the forefront of curriculum implementation, education standards officers (esos) in the exosystem, and policy initiators at the national government level in the macrosystem were targeted as participants and sources of relevant information for this study. the teachers interacting with learners and parents not only need a full grasp of the policy requirements but must have an inclusive curriculum that translates policy into actionable content and guidelines. teachers will thereafter have the capacity to facilitate the participation of all the learners in inclusive education setting (danforth & naraian 2015; spillane, reiser & reimer 2002; stoll 2009). to implement policy within the ecological systems approach, it is essential to take into account three interrelated aspects of capacity: individual capacity (ic) implies one’s status or ability which is different from other peoples’ ability or potential. collective capacity (cc) implies ways, means, processes and measures for people to work as a collective in schools, and material capacity (mc):mc is measured by amount of work completed or the quality of service rendered (lasky 2005:4). this implies that for efficient and effective curriculum reform and implementation to occur, there must be mutual compatibility and linkages between various parts of the ecological system briefly explained above. it seems teachers, learners, parents, government officials, administrators, etc., do not approach and embrace inclusive education from the same angle. it should be noted that in figure 2, the model does not have concentric circles but has the circles touching each other. this implies that the sub-systems are connected albeit with varying degrees of familiarity (neal & neal 2013). the common centre of inclusive education according to the authors’ point of view is its implementation. it is advisable that all stakeholders should have common understanding of its challenges and how they should be addressed. research methods and design this article reports an aspect of a bigger study which employed a mix-method research design. to get a better understanding on how inclusive education is offered to learners with sen, authors of this article employed a mixed-method design. both qualitative and quantitative methods complemented each other during data collection (maxwell 2013; onwuegbuzie & leech 2009; onwuegbuzie, leech & collins 2010; terrell 2012). mixed methods helped researchers to gain a more complete picture than a stand-alone quantitative or qualitative study. the research design enabled researchers to integrate benefits of both the methods. data collection instruments included semi-structured interviews of both individuals and focus groups, observations, questionnaires and photographs. other relevant data came from government policy documents, curriculum and instruction documents. the study was guided by bronfenbrenner’s (1979, 1992) ecological system model in its analysis of findings. the framework has the capacity to link the realms of philosophy, policy and practice (houston 2017; onwuegbuzie et al. 2013). as applied to the study, the provision of equal education access to learners with sen is a function of social interaction in a system of embedded structures (lau & ng 2014; maxwell 2013; onwuegbuzie & leech 2009; onwuegbuzie et al. 2010; terrell 2012; walker & pattison 2016). for the purpose of this article, both qualitative data from individual and focus groups as well as document analysis, and quantitative data from questionnaires are presented. sampling and participants purposive sampling was used to select a small group from a larger group with similar characteristics considered to be knowledgeable of, and informative about the phenomenon of interest; in this instance the provision of inclusive education to learners with sen in zambia (maxwell 2013; onwuegbuzie & leech 2009; onwuegbuzie et al. 2010; terrell 2012). the study participants came from seven (lua pula, lusaka, muchinga, western, southern, central & copperbelt) provinces of zambia. a purposively sampled small group also participated in the quantitative part of this study. the aim was to gather valuable information and to assess the extent of the education reform. the target population which comprised of teachers, administrators and education support officers was deemed to meet the criteria related to teaching learners with sen, different provinces, gender, age, post description, responsibilities and duties. as a result, the largest number of respondents were sen teachers and administrators currently involved in providing special education in zambia. there were seven focus group interviews which were held at seven different sites. the intention of the researchers was to interview 38 participants but because of circumstances beyond their control, they ended up interviewing 18 participants only. data collection focus group interviews qualitative data through interviews were collected before quantitative data through questioners were collected. participants were purposely selected and had similar characteristics including and not limited to knowledge of and information about curriculum reform and learners with special needs. each focus group comprised of three participants members plus the researcher. each focus group interview took about 1h 30 min. interviews took place at seven research sites (schools) and were conducted in english. this semi-structured interview focused on the six questions of the interview schedule. listed below are the questions which were posed to focus groups: to what extent has the curriculum in zambia been reformed to match key educational policy on sen? what are some of the key reforms in the current curriculum that facilitate inclusion of learners with sen? to what extent have curriculum reforms facilitating inclusion of learners with sen been in line with the education act 23, 2011 and the disability act 6, 2012? what would you consider the main impediments to curriculum reform and implementation targeting learners with sen in zambia? what aspects of curriculum reform with regard to sen have successfully taken root? what feedback on curriculum reform with regard to sen have you been getting from practitioners and other stakeholders? questionnaires a purposive sample of 150 sen teachers and 50 pre-service sen teachers was anticipated. in four provinces, the questionnaires were delivered to the respondents by a proxy. all respondents who received the questionnaire had to complete and return back the consent forms prior data collection through both interviews and questionnaires. in two cases, the respondents were given the option to return the completed questionnaires in a self-addressed envelope provided by the researchers using a courier service. the statements used to collect data using questionnaires are: statement 3: has the curriculum in zambia been reformed to facilitate inclusion of learners with sen and learning disability (ld)? statement 4: is government education policy on sen understood by the teachers and other stakeholders? statement 8: what have been the main successes in implementation of inclusion of learners with sen and ld in your school or centre? document analysis zambia policy document on curriculum reform was downloaded from the internet. in analysing document, special attention was given to units of meaning and set of categories. researchers made notes from available documents. researchers ensured authenticity by being open minded and referring to credible zambian government documents. as part of document analysis, the following documents: educating our future (republic of zambia ministry of education 1996) and zambia education curriculum framework (zambia mesvtee 2013) were targeted. policy documents were analysed to determine whether issues of curriculum reform were taken into high esteem by the government of zambia. furthermore, the researchers wanted to be sure whether those policies had clear inclusive education implementation plans. data analysis lecompte (2000:146) asserts that analysis required turning data into results. as a result, research results cannot be accurate or reliable if pieces of data are incomplete or biased. kothari (2004:122) suggests that data, after collection, be processed and analysed in accordance with the outline laid down for the very purpose of the research plan. analysis also implies editing, coding, classification and tabulation of collected data. interview notes and questionnaires produced a large quantity of data that needed to be summarised and interpreted. common threads, themes and, patterns were identified. thematic data analysis for qualitative data was employed. the following thematic data steps were considered: familiarisation coding generating initial themes reviewing themes defining and naming themes writing up in light of this idea, the researcher planned to be wholly immersed in the data so as to be familiar with the information or data and proceeded to systematically synthesise, organise, analyse, transcribe, segment and code data, eventually findings were then be presented. the researcher: (1) organised and prepared raw data for analysis, those were notes from archival documents and transcripts from interviews; (2) engaged or read data to get a general sense and reflected; (3) began by coding texts into consumable segments; (4) used codes to thematise or categorise for analysis; (5) presented how themes would help narrate a qualitative description; and lastly, (6) interpreted the collected data. all 150 questionnaires for sen teachers and 50 questionnaires for pre-service sen teachers were received. soon as data were collected, and while it was still fresh in the minds of researchers, the information was summarised and detailed notes were captured. information for those notes included among other things time and date details, common themes or patterns, and any other unique observations. researchers organised the data into different types such as, those being the observation notes, questionnaires and documents and/or artefacts. questionnaires were also grouped according to who had completed them. this step also involved reading and re-reading the material (data) in its entirety, making notes of thoughts that sprang to mind and writing summaries of each transcript or piece of data that had been analysed. mcmillan (2012:297) refers to this type of data as ‘etic data’ as they are representations of the researcher, whereas ‘emic data’ contain information provided by the participants in their own words. the objective with this step was to condense all of the information to key themes and topics that would provide some answers to the research question. the following quantitative data analysis steps were taken by researchers: interrogate your question cross tabulate quantitative results expand with open-ended questions analyse your open-ended data visualise your results interpret actionable insights ethical considerations the researchers adhered to research ethics requirements. during the interactions with participants, for instance, their rights, anonymity and confidentiality were protected (mcmillan & schumacher 2014). participants names and the specific sites they are attached to are not directly mentioned in the study. this was to further guarantee the principle of anonymity and confidentiality. codes in qualitative data analysis were also used. nowhere in the research was mention made of participants’ real names and the sites they worked at. during the open discussions, the purpose of the study was thoroughly discussed with the participants and they were informed of their rights to terminate or withdraw from the study, if they so wished during the process of data collection (booyse et al. 2001). the participants voluntarily accepted the participation by signing declaration forms that guaranteed the confidentiality and anonymity (ed. delamont 2012). the university of south africa, college of education research ethics (2015/07/15/08904782/01/mc.) granted the researchers ethical approval. results qualitative data theme: curriculum reform the respondents were first asked to comment on the extent to which they think the curriculum had been reformed to facilitate inclusion of learners with sen. the results from the atlas ti 7 report listing all the codes and documents indicate that respondents at all the seven sites where focus group interviews were conducted generally felt that there was a need for curriculum reform. some respondents noted that the reform was not enough and presents with many challenges: ‘unfortunately, the curriculum has not been reformed enough to include universal design for learning.’ (participant 1, focus group 1, male) ‘as sen teachers, we are the most challenged by the scanty content in the new curriculum because we have to try and modify the curriculum to include content for a variety of sens.’ (participant 2, focus group 1, female) the responses from the two curriculum development specialists were more positive about curriculum reform, but they both conceded that there were some noted attempts of reform with resulting challenges: ‘i can say that attempts have been made to match the policy. however, this is not easy to cover all disabilities and sen.’ (participant 9, focus group 3, female) ‘there have been some changes to focus on knowledge value, skills and application for specific disabilities. this has covered mainly the visually impaired and hearing-impaired students.’ (participant 13, focus group 5, male) all the esos had similar concerns with the teachers. for example, an eso declared: ‘we are using the same curriculum as the mainstream. so, what we do when the curriculum comes – we look at it and then ask what modification you can do as a school or as a teacher.’ (participant 10, focus group 4, male) another one commented: ‘unfortunately, the curriculum has not matched the policy requirements. teachers are expected to make modifications to the regular curriculum without the necessary materials.’ (participant 15, focus group 6, female) similarly, another eso mentioned: ‘however, there is not enough in the new curriculum framework to offer a guideline on how the strategies targeting learners with sen, as presented in the policy, should be achieved.’ (participant 13, focus group 5, male) the responses from all the school heads (n = 8) also suggested a lot of pent-up frustration. for example: ‘there has been no curriculum reform to account for the diverse sens. asking the teachers to modify the content of the curriculum oversimplifies the problem.’ (participant 11, focus group 4, male) ‘it is not enough to expect teachers to modify the curriculum. modification not only requires training in sen but experience in curriculum design.’ (participant 18, focus group 7, male) these comments indicate that the practitioners are generally very frustrated with the challenge of meeting the needs of learners with sen when the ministry of education does not provide a universally designed curriculum (ministry of education 1977). quantitative results quantitative data analysis is all about analysing number-based data (which includes categorical and numerical data) using various statistical techniques. the two main branches of statistics are descriptive statistics and inferential statistics (mcmillan & schumacher 2014). in this study, descriptive analysis also known as descriptive analytics or descriptive statistics was used. it is the process of using statistical techniques to describe or summarise a set of data. statements 3, 4 and 8 (table 1 and table 2) address the need for curriculum reform in line with the education act 23, 2011 and the disability act 6, 2012. table 1: frequencies report for statements 3, 4 & 8 with percentages. table 2: cross-tabulation report for statements 3, 4 & 8 against all locations. the statements are: statement 3: has the curriculum in zambia been reformed to facilitate inclusion of learners with sen and ld? statement 4: is government education policy on sen understood by the teachers and other stakeholders? statement 8: what have been the main successes in implementation of inclusion of learners with sen and ld in your school or centre? the results for statement 3 indicate that 44.6% disagreed that there had been sufficient curriculum reform as opposed to 26.6% who agreed and 28.8% opting for neutral. for statement 4, 60.5% of the respondents agreed with the suggestion that curriculum had not been sufficiently reformed to account for the diverse needs of learners with sen as opposed to 24.5% who disagreed with the statement. in response to statement 8 which presents lack of curriculum reform as an impediment to the successful implementation of inclusive education for learners with sen, 70.5% agreed with only 19.4% in disagreement and 10.1% opting for neutral. these results for statements 4 and 8 suggest that the 28.8% neutral responses for statement 3 might probably be leaning towards disagreement. from the cross-tabulation results for statements 3, 4 and 8 (table 1 and table 2) against all the locations, it appears that most of the respondents from the seven provinces sampled believed zambia had seen limited curriculum reform to support the successful implementation of government policy on inclusion at the classroom level. the cross-tabulation results for statements 3, 4 and 8 against the respondent’s current position indicate that respondents in all the current position categories generally disagreed with statement 3, which suggests that there had been sufficient curriculum reform in line with the education act 23, 2011 and the disability act 6, 2012. the highest disagreement rate was recorded by sen lecturers and special education needs coordinators’ (sencos) with 66.7% and 55.5%, respectively. in the case of statement 4, except for the guidance counsellors and teaching assistants, all the other respondent categories overwhelmingly felt that the curriculum had not been sufficiently reformed to account for the diverse needs of learners with sen. this result is further upheld by the responses to statement 8 which indicate that most of the respondents agreed that the lack of curriculum reform was one of the main impediments to successful sen policy implementation in zambia. the average rate of agreement for all groups was 73.0%. government documents analysis government and other official documents yielded important information that helped to complement or corroborate some aspects of data collected from other means. the main documents referred to were education sector: implementation framework 20082010 fifth national development plan (ministry of education 2007), educating our future (republic of zambia ministry of education 1996) and zambia education curriculum framework (zambia mesvtee 2013). an inclusive education 3-year pilot project was initiated in zambia in 2011. it was meant to strengthen national capacities for inclusive education. the project’s main objective was to improve access to quality education for children with visual impairments including those who were blind, those with low vision and refractive errors. it initially targeted 615 children and it was implemented in eight districts viz. mufulira and ndola districts of copperbelt province and the kazungula, monze, choma, kalomo, livingstone and mazabuka districts of southern province. the programme partners were the ministry of education, zambia open community schools, child hope, the zambia federation of disability organisations and sightsavers. it should be borne in mind that curriculum reform to facilitate the inclusion of learners with sen and other marginalised groups of learners generally accompanies many inclusive policy documents. unesco (2008) makes a salient and prodigious call to address the need for curricula change to support learners with sen. however, it remains difficult or tricky on how to develop pedagogy and curricula that will be inclusive and beneficial for all learners including those with sens. further, the government framework (zambia mesvtee 2013) indicates that implementation of inclusive education is inundated with a myriad of challenges including and not limited to: high enrolment levels, inadequate educational supplies, low staffing levels, inadequate classrooms and desks, dilapidated infrastructure, inadequate staff, teachers working under double or triple shift system, etc. the government of zambia, in 2013, produced a document of the review of the curriculum which was titled the zecf-2013. the framework came with new dictates which included the introduction of early childhood education (ece) into the mainstream ministry of education. what is worth noting is that the road map for the implementation of the new curriculum shows that its implementation for ece started in 2014. at that point in time, the education system in zambia had been grappling with various problems. the zecf-2013 was adding new responsibilities onto a system that was already having a lot of challenges particularly in the rural areas. it was felt that the zambian situation with its centralised nature of curriculum development led to a wide gap between the educational leaders on the one hand and the local community, teachers and students on the other. it is this very gap that makes it very necessary to constantly carry out studies on the curriculum after every review and/or reform to see how the curriculum implementation is fairing. furthermore, the framework focused on secondary schools leaving out the primary schools. the implementation of the reformed curriculum was exacerbated by the fact that it was for the first time in independent zambia that the primary public schools have ece as part of the systems. zambia’s government framework (zambia mesvtee 2013) posits that the philosophical rationale for educational provision is to nurture the holistic development of all individuals and to promote the social and economic welfare of society. this implies that the achievement of fairness in education should demand for educational policies which value and promote a multifaceted development of the learners, taking into account their uniqueness so that they can fully and rationally participate in the economic, cultural and social affairs of the nation. in the process of document analysis of the above-mentioned framework, researchers discovered that though it does mention inclusive education, curriculum reform has not taken off the ground as anticipated. as alluded by participants above under qualitative data analysis, reasonable accommodation or inclusion is only practised by sensory impaired learners (visually impaired and auditory impaired) learners and not by other groups of learners with disabilities. learners are still required to be taught by teachers who have special education qualifications. it is the researchers’ fervent view that if inclusive policies are formulated and proper structures are in place, inclusive education can be embraced and promoted. discussion the focus of this study is the development of children with sen through the implementation of inclusive education policy in zambia. this meant that the researchers used a theoretical framework that links the realms of philosophy, policy and practice. the researchers concur with bronfenbrenner’s, 1979 and 1992 view that learning is a function of social interactions in a system of embedded structures. the findings indicate that there has been very limited curriculum reform to facilitate the implementation of inclusive education policy as stated by participants under qualitative results above. the results from the questionnaire and interviews further show that what constitutes the ideal curriculum is not yet a reality in zambia. some proponents of inclusive education practice have argued that development of pedagogy and curricula that is inclusive is one of the main challenges of implementing inclusive education (davis & florian 2004; naicker 2007; theoharis & causton 2014; udvari-solner & thousand 1996; wolfe & hall 2003). this holds true in zambia as most of the participants listed the limited curriculum reform to support inclusive practice as one of the impediments to inclusive policy implementation. the most up-to-date curriculum document at the time of this study was the zambia education curriculum framework 2013 which, though it makes mention of the requirement of inclusion as part of educational policy in zambia, does not provide practitioners with guidelines about how to ensure the inclusion of learners with sen. without a curriculum map that provides direction for teachers to provide a meaningful learning experience for all learners, the thrust for equity through inclusive practice in education will remain rhetoric (flood & banks 2021; pugach et al. 2020; theoharis & causton 2014). the curriculum implementers in zambia should have a common understanding and work with a udl framework to achieve effective inclusive education for all learners (conn & hutt 2020; meier & rossi 2020; mukminin et al. 2019; yuen et al. 2019). limitations there were several limiting factors that had a bearing on the validity and reliability of the findings of this research study. the first factor related to the reliance on a qualitative research design which is open to subjectivity. a mixed-method approach was used to mitigate the subjectivity by including quantitative data through administering a questionnaire that yielded quantitative data and qualitative data that were analysed using a statistical software programme. in the data analysis, findings from the qualitative data and quantitative data were put together to support finding claims and inferences. moreover, data were collected using more than three data collection tools. consequently, validity and reliability were enhanced through triangulation of the data collection instruments in the data analysis. the second factor related to the use of purposive sampling and the sample size. purposive sampling might not be representative of the population and the population members do not have an equal chance of participation as would have been the case if random sampling were used. moreover, because the participants were somewhat homogeneous as educational practitioners the data loses a critical perspective. another key point to note about the sample is that learners with sen were not represented as a source of data. however, it is also important to note that the nature of data required to answer the research questions made it an imperative to target practitioners who could provide relevant responses because of their experience in education provision in general, and in the provision of sen education in particular. in mitigation of the subjectivity, the participants were targeted from different sites in both rural and urban settings. moreover, participation was open to all practitioners as long as they gave informed consent to participate. the third factor related to the time available for data collection which was limited to about 12 weeks. this resulted in a smaller pool of possible participants being available. consequently, less data was collected than anticipated, which affected the reliability of the findings. having limited time also meant that the researchers could not reach all the ten provinces of zambia. nevertheless, seven out of ten provinces still represent 70% reach with respect to the original intent to cover all the ten provinces in the country. the final factor related to the emphasis on qualitative data received from interviews. it is very plausible that some respondents might have provided positive responses to avoid upsetting the status quo. however, the assurance of anonymity and confidentiality seemed to have mitigated this concern based on the patterns arising from the data analysis. recommendations firstly, it is imperative that the curriculum is reformed to come up with a udl to facilitate the efficient and effective inclusion of learners with sen in the mainstream classrooms. to this end, research-based curriculum reform should be accompanied by teacher capacity building initiatives and processes for the implementation of inclusive curriculum. it is important to note that starting at pre-knowledge in this effort and building up from there is essential for effective implementation of inclusive curriculum. secondly, there is a need for specific guidelines for curriculum implementation involving differentiation for the diverse needs of all learners. it is recommended that the curriculum should come with smart objectives that are specific, measurable, achievable, realistic and are time-bound. this would allow for evaluation of inclusive curriculum implementation. moreover, there must be clear standards for learner progress in the curriculum and that will only be possible through rigorous curriculum reform in zambia. thirdly, it is recommended that there should be both support instruments and evaluative instruments at the disposal of education standard officers and other policy intermediaries to build in continuous quality assurance and quality improvement. reflective practice is required to enhance efficient and effective inclusive curriculum implementation. finally, curriculum implementation will require adequate resourcing and infrastructure from government and other stakeholders in education. this calls for adequate government funding and investment in education. construction of more classroom space, training of more special education specialists and paraprofessionals to support the inclusion of learners with sen must go along with efforts at implementing udl principles and practices. conclusion this article suggests that a lack of meaningful curriculum reform is a major challenge that efforts at curriculum implementation guidelines development will face in the republic of zambia. to achieve curriculum implementation, the whole educational system should be made ready to contribute to the common goal to achieve the goals of inclusive education provision in zambia. whether it takes the form of curriculum reform or renewal, the key lies in the fact that all requisites for the efficient and effective implementation of inclusive education are interrelated and interconnected. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ 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https://doi.org/10.1177/004005990303500409 yuen, m., lee, c., chung-yee tse, a., liu, j., yuen-ping wong, m. & how-sim ho, a., 2019, ‘new initiative in special education in macao: a curriculum reform project’, international journal of special education 34(1), 40–50. republic of zambia ministry of education, 1996, educating our future: national policy on education, zambia educational publishing house, lusaka. zambia mesvtee, 2013, the zambia education curriculum framework, cdc, lusaka. abstract introduction conceptual framework and its applications conclusion acknowledgements references about the author(s) deepan c. kamaraj human engineering research laboratories, va pittsburgh healthcare system, united states department of rehabilitation science & technology, school of health and rehabilitation sciences, university of pittsburgh, united states nathan bray centre for health economics and medicines evaluation, school of healthcare sciences, bangor university, united kingdom karen rispin department of biology, letourneau university, united states padmaja kankipati specialized mobility operations and innovation pvt. ltd, india jonathan pearlman human engineering research laboratories, va pittsburgh healthcare system, united states department of rehabilitation science & technology, school of health and rehabilitation sciences, university of pittsburgh, united states johan borg social media and global health, lund university, sweden citation kamaraj, d.c., bray, n., rispin, k., kankipati, p., pearlman, j. & borg, j., 2017, ‘a conceptual framework to assess effectiveness in wheelchair provision’, african journal of disability 6(0), a355. https://doi.org/10.4102/ajod.v6i0.355 original research a conceptual framework to assess effectiveness in wheelchair provision deepan c. kamaraj, nathan bray, karen rispin, padmaja kankipati, jonathan pearlman, johan borg received: 12 dec. 2016; accepted: 18 may 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: currently, inadequate wheelchair provision has forced many people with disabilities to be trapped in a cycle of poverty and deprivation, limiting their ability to access education, work and social facilities. this issue is in part because of the lack of collaboration among various stakeholders who need to work together to design, manufacture and deliver such assistive mobility devices. this in turn has led to inadequate evidence about intervention effectiveness, disability prevalence and subsequent costeffectiveness that would help facilitate appropriate provision and support for people with disabilities. objectives: in this paper, we describe a novel conceptual framework that can be tested across the globe to study and evaluate the effectiveness of wheelchair provision. method: the comparative effectiveness research subcommittee (cer-sc), consisting of the authors of this article, housed within the evidence-based practice working group (ebp-wg) of the international society of wheelchair professionals (iswp), conducted a scoping review of scientific literature and standard practices used during wheelchair service provision. the literature review was followed by a series of discussion groups. results: the three iterations of the conceptual framework are described in this manuscript. conclusion: we believe that adoption of this conceptual framework could have broad applications in wheelchair provision globally to develop evidence-based practices. such a perspective will help in the comparison of different strategies employed in wheelchair provision and further improve clinical guidelines. further work is being conducted to test the efficacy of this conceptual framework to evaluate effectiveness of wheelchair service provision in various settings across the globe. introduction wheelchairs are key assistive products that help improve the quality of life of people with disabilities (shore & juillerat 2012; world health organization 2016). their use encourages community participation (mortenson et al. 2012; salminen et al. 2009), increases access to education (dudgeon, massagli & ross 1997) and provides better opportunities of employment (borg et al. 2012) for people with disabilities. these life-changing products could decrease healthcare expenditures and influence national and global economies (bray et al. 2014; greer, brasure & wilt 2012a). the world health organization (who) estimates that between 10% (who 2008a) and 15% (who 2011) of the world’s population (about one billion people) and 5% of children worldwide (around 95 million children aged 14 or under) have a disability (who 2008b). one in ten people with a disability requires a wheelchair for their mobility (sheldon 2006). estimates indicate that over 20 million people who need wheelchairs for their everyday mobility are unable to obtain them (who 2008a, 2008c, 2011). independent mobility is a human right: signatory countries to the convention on the rights of persons with disabilities are mandated to ensure that their citizens can equitably access affordable assistive products, including wheelchairs to promote mobility and independence (borg et al. 2009; un 2007). currently, absent or inadequate wheelchair provision has forced many people with disabilities into a cycle of poverty and deprivation, limiting their access to education, work and social facilities (borg et al. 2009; who 2008b). this lack of access is in part because of the lack of collaborations among various stakeholders who need to work together to design, manufacture and deliver wheelchairs. in turn, this has led to inadequate evidence for intervention effectiveness, disability prevalence and subsequent costeffectiveness that would help facilitate appropriate provision and support for people with disabilities (who 2011). the who guidelines on the provision of manual wheelchairs in less-resourced settings provide a broad overview of the functions of wheelchair services (who 2008c). these comprehensive guidelines outline eight key sequential steps involved in the wheelchair service delivery process. independent researchers have also conducted qualitative studies to identify stakeholders and their contributions that would have to be addressed during wheelchair provision (batavia, batavia & friedman 2001; eggers et al. 2009; greer, brasure & wilt 2012b). however, quantitatively evaluating stakeholder contributions and strategies adopted to accomplish the eight steps in various settings in different parts of the world is still a challenge. developing a process to study and understand the relationships between the various stakeholders and their contributions will aid in comparing the effectiveness of various strategies adopted to accomplish these eight steps. stringent methodologies utilising the core principles of comparative effectiveness research (brophy 2015; brouwers et al. 2012; dahabreh et al. 2008) could help employ analytical techniques used in health economics to facilitate more cost-effective and efficient provision of wheelchairs. the aim of this pilot work is to establish a common conceptual framework that can be tested across the globe to study and evaluate the effectiveness of wheelchair provision. conceptual framework and its applications the comparative effectiveness research subcommittee (cer-sc), consisting of the authors of this article, is housed within the evidence-based practice working group (ebp-wg) of the international society of wheelchair professionals (iswp). the ebp-wg aims to identify and assess opportunities to improve the adoption of best practices in the field of wheelchair provision through coordination with stakeholders on a global scale. the cer-sc comprises wheelchair professionals and researchers from across the globe, and acts as the core support group for studies that evaluate effectiveness of wheelchair provision. the expertise of the cer-sc spans a wide range of disciplines, including biology, rehabilitative engineering, health economics, social medicine and global health. the cer-sc used its own familiarity with the literature and undertook a scoping literature search (using google scholar, pubmed and psycinfo) to implement a two-step process in the development of the conceptual framework. the first step defined effectiveness as it pertains to wheelchair provision and the second step involved the development of the conceptual framework to evaluate the effectiveness of wheelchair provision. the framework was primarily developed through discussions within the cer-sc, with continuous mapping of concepts and terminology. this was an iterative process drawing on the expertise of each member of the cer-sc. where there was disagreement, further discussion and literature searching took place to reach consensus. in order to guide the conceptualisation process and establish common terminologies for further discussion, wheelchair provision is defined as an overarching term used to describe the process of wheelchair design, production, supply and service delivery (who 2008c); effectiveness is defined as the relationship between the level of resources invested in wheelchair provision and the level of results, or improvements in health (branch & madore 1993). further, assessing effectiveness compares two things that have the same effect or the same purpose. the economic dimension of effectiveness alludes to cost, encompassing the concepts of cost-effectiveness and cost reduction. thus, effectiveness can be studied in terms of clinical and economic aspects of healthcare (branch & madore 1993). based on these definitions, version 1 of the framework (figure 1) was developed to identify various stakeholders in wheelchair provision and potential outcome variables that can be studied to evaluate effectiveness. figure 1: version 1 of the conceptual framework. further discussions led to the second version of the framework, which included the eight steps from the who guidelines for provision of manual wheelchairs in less-resourced settings (who 2008c), to provide a detailed description of the processes of wheelchair service provision. the structure of the framework was revised to illustrate the interdependency between the various factors of the process. the third and the final iteration (figure 2) included domains from the international classification of functioning and disability (who 2001) and the wheelchair service provision guidelines from the rehabilitation engineering society of north america (arledge et al. 2011) to include two key domains: environmental and personal factors that play an indirect role in the wheelchair service provision process. to maintain a simple and pragmatic framework that could be adopted for everyday clinical practice and effectiveness evaluation, key factors involved in wheelchair provision were categorised into three groups of variables with domains and subdomains within each group. the underlying concept echoes the idea that a group of independent variables interacting with each other impact the users’ everyday life. this impact can be studied using a group of dependent variables, while accounting for certain confounding variables that affect the relationship between the dependent and independent variables. figure 2: conceptual framework illustrating the factors that affect wheelchair provision. factors pertaining to the wheelchair constituted the first domain of the independent variables. the factors pertaining to the wheelchair and the eight steps from who were discussed under two domains of independent variables. access to a suitable wheelchair and various aspects of wheelchair design and production (such as types of wheelchairs, meeting iso standards, durability, reparability and availability of spare parts that directly impact the life of a wheelchair) were included in the first domain. factors pertaining to wheelchair supply and service delivery (types or models of services, processes, their quality and cost) constituted the second domain of the independent variables. the impact of the interaction between the two domains of the independent variables could be studied using a set of outcome variables, defined as dependent variables. depending on the focus of these outcome variables, they were classified into two domains: administrative or organisational factors at the community level and factors pertaining to the wheelchair users at an individual level. within each domain, the impact of the wheelchair provision on the individual’s or the community’s well-being can be evaluated under four key subdomains: physical well-being and functional mobility, psychosocial well-being, health-related quality of life and economic contributions. the relationship between the independent and dependent variables, that is, the relationship between the wheelchair provision and the outcomes, could be affected by environmental and personal factors, contributing to the two domains of the confounding variables. the built environments, geographic locations, climate conditions along with the social and financial infrastructures constitute the environmental subdomain. demographic factors like ethnicity, religion, functional ability, education, vocation and participation constitute the personal subdomain. to specifically illustrate the concept of cost-effectiveness and define it within the realm of wheelchair provision, it is identified as a separate domain defined by the relationship between the costs of wheelchair provision and the impact or the outcome it produces as measured by the dependent variables. the relationships between the independent and confounding variables have a profound effect on the effectiveness of wheelchair provision. for example, if we are to compare the psychosocial impact (user-related outcomes subdomain) of two models of wheelchair provision, we must consider not only the wheelchair user’s clinical needs, but also the environment where the device would be used (environmental domain), level of wheelchair skill (personal domain) and the quality of wheelchair equipment available (wheelchair domain). further work is being conducted to test the efficacy of this conceptual framework to evaluate effectiveness of wheelchair service provision in various settings across the globe. a repository of outcome measures is being developed to quantify these factors, and establish the relationships between the various domains and subdomains. future work will be focused on developing newer measurement tools, adopting psychometric and econometric methods to analyse and study the relationships of these various factors using the identified outcome measures. in 2016, the united nations established 17 sustainable development goals (sdgs) to combat poverty, reduce inequality, protect the environment and ensure all people can live in safety. as noted by tebbutt et al. (2016), assistive products are an ‘essential component for inclusive sustainable development’ (tebbutt et al. 2016). for these sdgs to be realised, the provision of adequate assistive products such as wheelchairs must become a priority for governments. the wider economic, social and environmental benefits of appropriate provision of assistive technology should not be underestimated. however, universal provision of such devices cannot be achieved in an efficient and cost-effective manner unless evidence-based practices are established to guide such provision. we believe that adoption of this conceptual framework could have broad applications in wheelchair provision globally to develop evidence-based practices. such a perspective will help in the comparison of different strategies employed in wheelchair provision and further improve clinical guidelines. further, this methodical approach will lay the groundwork to evaluate the efficiency and effectiveness of wheelchair provision, which can be used to advocate for the rights of people with disabilities and to draft informed policies aimed at promoting participation of people with disabilities. conclusion wheelchair provision is a complex rehabilitation intervention necessitating cooperation and collaboration between various healthcare or rehabilitation professionals and wheelchair users. however, studying the effectiveness of wheelchair service delivery models and the relationship between the various stakeholders has been a hurdle faced by rehabilitation professionals. to address this gap in scientific literature, this project adopted the principles of comparative effectiveness research to develop a cohesive conceptual framework that could be used to evaluate wheelchair provision. through the development of this framework, we hope to provide researchers, clinicians and policymakers a structured approach with common terminologies to identify key variables from the myriad factors that need to be considered when evaluating the effectiveness of wheelchair provision. future work will aim to evaluate the efficacy of this framework. acknowledgements we thank the staff of the international society of wheelchair professionals, particularly ms nancy augustine, ms kimberly robinson and ms krithika kandavel for their support in conducting the meetings crucial for completion of this project. the united states agency for international development funded this work (grant no. apc-gm-0068). competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions d.c.k. and n.b. were the project leaders and co-chairs for the iswp’s cer-sc. they were responsible for conducting and coordinating monthly meetings. d.c.k. was responsible for drafting the article. j.b., k.r., p.k. and j.p. offered critical conceptual contributions for the development of the framework and provided comments to draft the 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khasnabis, c. & horvath, r., 2016, ‘assistive products and the sustainable development goals (sdgs)’, globalization and health 12, 79. https://doi.org/10.1186/s12992-016-0220-6 un, 2007, 61/106. convention on the rights of people with disabilities, un, new york, us. who, 2001, international classification of functioning, disability and health (icf), who library cataloguing-in-publication data, geneva, viewed 27 january 2017, from http://www.who.int/classifications/icf/en/ who, 2008a, concept note. world report on disability and rehabilitation, world health organization, geneva. who, 2008b, the global burden of disease, world health organization, geneva. who, 2008c, guidelines on the provision of manual wheelchairs in less-resourced settings, world health organization, geneva. who, 2011, world report on disability, who, geneva. who, 2016, priority assistive products list, who press, geneva. about the author(s) mary m. makgato department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa monicca leseyane-kgari department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa madoda cekiso department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa itani p. mandende department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa rose masha department of applied languages, faculty of humanities, tshwane university of technology, pretoria, south africa citation makgato, m.m., leseyane-kgari, m., cekiso, m., mandende, i.p. & masha, r., 2023, ‘corrigendum: evaluating the awareness and knowledge of dyslexia among primary school teachers in tshwane district, south africa’, african journal of disability 12(0), a1079. https://doi.org/10.4102/ajod.v12i0.1079 note: doi of original article published: https://doi.org/10.4102/ajod.v11i0.807 correction corrigendum: evaluating the awareness and knowledge of dyslexia among primary school teachers in tshwane district, south africa mary m. makgato, monicca leseyane-kgari, madoda cekiso, itani p. mandende, rose masha published: 09 may 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in the published article, makgato, m.m., leseyane-kgari, m., cekiso, m., mandende, i.p. & masha, r., 2022, ‘evaluating the awareness and knowledge of dyslexia among primary school teachers in tshwane district, south africa’, african journal of disability 11(0), a807. https://doi.org/10.4102/ajod.v11i0.807, the name of one of the authors was incorrectly spelled in the reference for taylor and coyne (2014) as tailor. it should be taylor. the authors apologise for this error. the correction does not change the study’s findings of significance or overall interpretation of the study’s results or the scientific conclusions of the article in any way. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) mary wickenden participation, inclusion and social change cluster, institute of development studies, brighton, united kingdom tim g.b. hart developmental, capable and ethical state research division, human sciences research council, pretoria, south africa department of sociology and social anthropology, faculty of humanities, stellenbosch university, stellenbosch, south africa stephen j. thompson participation, inclusion and social change cluster, institute of development studies, brighton, united kingdom yul d. davids developmental, capable and ethical state research division, human sciences research council, cape town, south africa mercy ngungu impact centre research division, human sciences research council, pretoria, south africa citation wickenden, m., hart, t.g.b., thompson, s.j., davids, y.d. & ngungu, m., 2023, ‘how did south africans with disabilities experience covid-19? results of an online survey’, african journal of disability 12(0), a1119. https://doi.org/10.4102/ajod.v12i0.1119 project research number: gcrf nf 362. original research how did south africans with disabilities experience covid-19? results of an online survey mary wickenden, tim g.b. hart, stephen j. thompson, yul d. davids, mercy ngungu received: 09 aug. 2022; accepted: 27 oct. 2022; published: 09 feb. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with disabilities are a large, disadvantaged minority, comprising approximately 12% of the population. the south african government has ratified international and regional disability treaties but deals with disability rights within general anti-discrimination legislation. there are no specific frameworks to monitor justice for people with disabilities. the study aims to inform further development of disability inclusive mechanisms relating to crises including pandemics. objectives: this study explored the perceptions of south africans with disabilities, to understand their experiences during coronavirus disease 2019 (covid-19), focussing on socioeconomic, well-being and human rights aspects. method: an online survey tool generated quantitative and qualitative data. widespread publicity and broad recruitment were achieved through project partners networks. participants responded via mobile phone and/or online platforms. results: nearly 2000 people responded, representing different genders, impairments, races, socio-economic status, education and ages. findings include: (1) negative economic and emotional impacts, (2) a lack of inclusive and accessible information, (3) reduced access to services, (4) uncertainty about government and non-government agencies’ support and (5)exacerbation of pre-existing disadvantages. these findings echo international predictions of covid-19 disproportionally impacting people with disabilities. conclusion: the evidence reveals that people with disabilities in south africa experienced many negative impacts of the pandemic. strategies to control the virus largely ignored attending to human rights and socioeconomic well-being of this marginalised group. contribution: the evidence will inform the development of the national monitoring framework, recognised by the south african government and emphasised by the united nations as necessary to ensure the realisation of the rights of people with disabilities during future crises including pandemics. keywords: south africa; disability; covid-19; rights; socio-economic; survey; online. introduction the first global case of coronavirus disease 2019 (covid-19) was recorded in late 2019 and by march 2020 the world health organization (who) confirmed that the world was facing a pandemic (who 2020b). in pre-pandemic times, people with disabilities were recognised as one of the most excluded groups in our society, despite the united nations (un) convention on the rights of persons with disabilities (crpd) declaring that people with disabilities cannot be discriminated against and should enjoy all human rights and fundamental freedoms (un 2007). as the seriousness of the pandemic developed, warnings emerged that covid-19 could deepen pre-existing inequalities for people with disabilities, exacerbating their experiences of social and economic exclusion (un 2020). south africa is a signatory to the crpd and the optional protocol and has ratified both. as the situation evolved, the un (2020) urged states to honour their international commitments and include people with disabilities in covid-19 responses. meanwhile, the first indications from south africa were emerging that this was not happening and people with disabilities were being excluded (international disability alliance [ida] 2020b; mckinney, mckinney & swartz 2020). despite many social researchers around the world pivoting their work to focus on better understanding the human impact of the pandemic and associated responses, a paucity of evidence relating to how marginalised groups were being included or excluded from research remained. while some studies (such as stiegler & bouchard 2020) investigated the social impact of covid-19 in south africa, the empirical evidence relating to experiences of people with disabilities remained limited. part of the challenge is that people with disabilities are often excluded from research. when deciding about whom or what to investigate, researchers often have a bias towards convenient questions and populations that are readily researchable, as opposed to inconvenient questions and populations who are difficult to research (chambers 2017). as such, not all segments of society are equally included in research. evidence suggests that covid-19 research is not uniform, with some societal groups being included while others were excluded. strachan (2021:3) reported that ‘there is significant coverage of the gendered impact of covid-19 on research methods and approaches’, but an evidence gap exists relating to how people with disabilities experienced the pandemic and national responses. to address this evidence gap, this research explores the impact of covid-19 on people with disabilities in south africa. to investigate the social and economic impact and human rights aspects of the pandemic on this marginalised and often under-researched group, a research partnership was formed between two south african partners, the human sciences research council (hsrc) and the national council of and for persons with disabilities (ncpds), and the institute of development studies (ids) from the united kingdom. the objective was to produce evidence-informed recommendations that the south african government and civil society can use to help to ensure that the rights of south africans with disabilities are upheld when executing measures to diminish against the impact of the current pandemic and future crises. background literature a review of literature on the impacts of covid-19 on people with disabilities globally finds that there is a limited but growing body of work. there is a particular dearth of evidence focusing specifically on africa. the current evidence tends either to be focused on a few countries or form part of large global surveys, but these often have very few respondents from middleand low-income countries. several extensive literature reviews have been undertaken (kubenz & kiwan 2021; meaney-davis, lee & corby 2020; wickenden et al. 2022). much of the global level grey literature, published early in the pandemic, subsequently predicted exacerbated negative experiences for people with disabilities (castres & o’reilly 2020). advisory materials written by organisations for people with disabilities (opds), international non-governmental organisations (ingos) and various un bodies, although variously focussed on specific subgroups of people with disabilities or allied workers, are generally in agreement about calling for a universally disability inclusive approach to humanitarian action and pandemic mitigation (cbr africa network [can] 2020; hartley & balakrishna 2020; hi 2020; ida 2020a; international disability alliance & international disability and development consortium [ida & iddc] 2020; leonard cheshire 2020; light for the world 2020; office of the united nations high commissioner for human rights [ohchr] 2020; uncrpd 2020; united nations educational, scientific and cultural organization and united nations partnership on the rights of persons with disabilities [unesco and unprpd] 2021; who 2020a; world blind union [wbu] 2020). some research has explored the impacts and challenges imposed by the pandemic with groups who are allies of people with disabilities such as opds and agencies such as ingos whose activities have been affected by covid-19 (bhakta 2021). the limited primary research on covid-19 and disability, asking people with disabilities directly about their experiences, is mostly focussed on high income settings, on populations with particular health concerns, genders or impairments (smith et al. 2020; women enabled international [wei] 2020). by nature, the pandemic and the restrictions on personal contact made it difficult to conduct any kind of face-to-face research, such as interviews or focus groups, and so many have used online methods, either structured, semi-structured or narrative-based methods (i2i 2020; rohwerder et al. 2021). some have explored aspects such as health or economic concerns or access to support and relief services, but often those from the most marginalised impairment groups have been left out, because of the perceived challenges in accessing their views (meaney-davis 2020). fewer have asked broad questions related to socio-economic impacts, emotional well-being or human rights related aspects or explored the effects of the different types of lockdowns (i.e. different levels of strictness), which many countries’ governments imposed at different times. issues related to access to vaccinations and prioritisation for healthcare have been explored to some extent, but came later in the progress of the pandemic, as vaccines, protocols and clearer ideas about treatment developed (epstein, ayers & swenor 2021; mckinney et al. 2020; mckinney, mckinney & swartz 2021; who and unicef 2021). the present authors have reported on some of our data on vaccination separately (hart et al. 2021). overall, findings from studies looking at impacts of the pandemic on individuals with impairments have been remarkably (and sadly) uniform across countries and regions, subgroups explored, and methodologies used. thus, individual interviews (usually conducted remotely by phone), online surveys, group responses from representatives such as opds, all report the exacerbated disadvantages experienced by many people with disabilities globally during the pandemic (bernard et al. 2020; brennan et al. 2020). economists are now exploring the extent to which the pandemic has increased inequity and it seems clear that it has made the already poor, poorer in many situations (pozhidaev 2022). at a more granular level, there are examples in diverse settings of the emotional and psychological impact – including stress and/or depression and/or worry about immediate survival and the future, feelings of loss (of opportunities, and of agency), increased conflict within the home and outside, and feeling isolated and confined. economic impacts are also widely reported, where people have lost work or their own businesses and some have had extra expenses, such as increased costs of transport, food, impairment related services (christensen 2020; rohwerder et al. 2021). often there was worry about how they would cope financially if there were repeated waves of lockdown, as savings and loan options had been exhausted early on and many had serious concerns about falling into dire poverty. educational opportunities were limited, as schools, colleges and universities were closed and, of course, this affected all learners everywhere. however, for students with disabilities, who anyway are likely to live in poverty, access to online learning was often reduced because of the lack of connectivity or because virtual learning was not adapted and accessible for them (ressa 2020). in addition, for some young people with learning disabilities and/or social and/or behavioural difficulties like autism, not being able to go to their regular daytime activities was difficult to understand and caused frustration and challenges for their families at home (samboma 2021). social contact with others was missed and for some friendships at home and in the community were more limited, so people felt isolated and lonely (courtenay & cooper 2021; rohwerder 2020). another major area of consensus, across many studies and settings is the general inadequacy of information from government and other agencies in accessible formats (armitage & nellums 2020; fernandez-diaz, iglesias-sanchez & jambrino-maldonado 2020; yap et al. 2020). television announcements are often not sign language or caption supported, visual or written information on posters and leaflets may not be accessible, content is often not in easy read, simple language with visual support, and so on. various studies found that people with disabilities felt they did not have access to all the accurate information they needed or that messages were confusing. relief and support services are also often reported to be insufficiently inclusive and adaptive. for example, having to go to a central collection point to acquire hygiene products, food, and the like is not easy. there is report of helpful support (both emotional and material) from opds and ingos, but this was not enough. commonly people felt that the government’s emergency relief processes had not taken the needs of people with disabilities into account. this included confusion and ambiguity about social protection and the relationship between ordinary (pre-covid-19) disability grants and similar, and what was available during covid-19 (hart, msitshana & bohler muller 2020). gender, age and impairment specific concerns arise to some extent in the literature (wickenden et al. 2022). for example, women and girls sometimes report increased violence or perceived risk of violence both at home and in public spaces. both children and the elderly are mentioned as vulnerable and like people with disabilities across the lifespan could not always access their usual health and rehabilitation services and community supports. fear of infection and increased stigma and discrimination against people with disabilities from the community were evidenced in some studies (mckinney et al. 2021; ned et al. 2020). some authors interestingly discuss the more existential aspects of disability status and whether vulnerability is a useful or acceptable term to use especially in the context of an extreme situation such as a pandemic. it is certainly true that some people with disabilities feel patronised and disempowered by being described as vulnerable, while others argue that this status is important in achieving extra recognition and protection (such as priority access to health services, vaccines etc.) (ahmad et al. 2020; ned et al. 2020; rotarou et al. 2021; scully 2020; singh 2020). there were some recurring impairment-related challenges; for example, for people with mobility impairments – difficulty in accessing emergency support venues; for visually impaired people – concerns about the safety of accepting physical contact for guiding as they feared infection through direct contact; for hearing impaired people – misunderstandings about or the lack of access to the key information; for those with psychosocial impairments – the potential lack of access to their usual medication and psychological support and exacerbation of mental health difficulties such as depression and anxiety (sale, polyakov & eaton 2020). to summarise, negative impacts of covid-19 for people with disabilities were presaged early in the pandemic by both researchers and people with disabilities and their allies in opds and by un agencies and ingos and have generally been found to be true predictions. although south africa still lacks specific disability legislation in the form of an act of parliament, section 7(2) of the 1996 constitution enjoins the state to ‘respect, protect, promote and fulfil the rights in the bill of rights’. it enshrines the rights of all who reside in south africa, including people with disabilities, to equal treatment covering various aspects including their rights to dignity, personal security, freedom from all types of violence, access to adequate housing, healthcare services, sufficient food and water, social security, basic education, and adult basic education. section 9 of the constitution, in the bill of rights, guarantees equality and prohibits discrimination for everyone, including people with disabilities. the promotion of equality and prevention of unfair discrimination act 4 (2000) and the employment equity act 55 (1998) jointly give effect to the implementation of section 9. during the early stages of the pandemic, mckinney et al. (2021) identified that despite these legal protections people with disabilities were facing continuing challenges regarding rights to accessing healthcare and related services. interestingly, neither the disaster management act of 2002 and the disaster management framework (republic of south africa, 2005), the legislation and policy invoked since march 2020 to manage and mitigate the covid-19 pandemic, make any mention about people with disabilities. instead they talk of vulnerable groups and households. consequently, they ignore the diversity of vulnerability of people with disabilities and thus would seemingly fail to adequately acknowledge this group and ensure that interventions focus on their specific circumstances and needs. this study set out to understand the experiences of people with disabilities in south africa, within the context of the country’s specific regulations and various levels of lockdown. the authors focussed particularly on socioeconomic well-being and human rights related aspects and with the intention to inform the government frameworks and practice in relation to disability inclusive disaster and crises management. research methods and design the researchers’ approach was to design a bespoke survey to be disseminated online as widely as possible to people with disabilities across south africa. participants responded via phones and computers and their data were uploaded and stored centrally and anonymously. to ensure that potential participants did not refrain from joining the study for financial reasons, respondents were compensated for the data costs incurred through their participation. the research team comprised members from the three collaborating partner institutions. the team jointly compiled and tested an online survey specifically for people with disabilities exploring a wide range of socioeconomic issues related to covid-19 and with accessibility needs particularly considered. the draft survey was piloted among a group of people with diverse disabilities and disability scholars. after adjustment, it was made available online as a google forms document. to comply with covid-19 protocols that prevented direct access to individuals with disabilities, a covering letter with the link to the survey was sent to many people with disabilities, opds, government departments and private enterprises, particularly those known to support and employ people with disabilities, asking them to disseminate it to persons with disabilities. the introduction included a consent process and guidelines for parents or assistants who could support respondents where necessary. these procedures were in accordance with both the ids and the hsrc research ethics approval obtained for this study. the online survey introduction asked respondents to complete the questionnaire if they considered themselves a person with disabilities or with at least one impairment. the research team had no direct contact with the respondents and only received anonymous data from the online data set of voluntary respondents. a total of 1857 respondents completed the survey. the survey tool was quantitative in structure but included some free-text questions to elucidate some of the quantitative answers in more detail. the instrument focused on general socioeconomic and human rights experiences of persons with disabilities. it collected some demographic information including the washington group (2019) short set of questions. the main questions asked were about economic and emotional status and impacts, perceptions of support by the state and other organisations during the pandemic, communication and awareness of covid-19, access to usually needed care services, willingness to be vaccinated, and perceived risk of and exposure to covid-19. also included were questions about perceptions of the disability-inclusiveness of government and non-governmental organisations (ngo) responses to covid-19. this analysis uses descriptive statistics and focuses on the quantitative questions. however, some qualitative clarification responses were invited where relevant. the authors used spss version 27 to analyse the quantitative data. data were disaggregated and cross-tabulated in selected ways for reporting in this article. ethical considerations the authors gained ethical approval for the study from both ids (uk) ethics committee and human science research council (sa) ethics committee protocol no. rec 1/11/20. results the sample a detailed analysis of the 1857 respondents showed that 63.9% (n = 1185) were male, 35.5% (n = 660) were female, and 0.6% (n = 11) indicated other. in terms of education, the majority completed some secondary schooling (22%, n = 406); some completed matric (40%, n = 745) and higher education or a degree or diploma (16%, n = 294). twelve per cent had no formal schooling (n = 219) and 4% only had primary schooling (n = 81). a combined total of 6% selected ‘do not know’ or ‘prefer not to say’ regarding the questions on education level. a large proportion of the sample (93%; n = 1736) is 18–54 years of age. almost one-third (31%, n = 579) were between 18 and 24 years; 21% (n = 395) 25–34 years; 13% (n = 234) 35–44 years; and 28% (n = 528) 45–54 years. south africa is a highly unequal country, because of its apartheid legacy of racial inequalities, thus the authors provide a disaggregation by race using the usual categorisations, although they recognise that these are potentially problematic. the survey sample was largely black african people (83%, n = 1544), while white people (10%, n = 186), mixed race people (5%, n = 93), and indian people (2%, n = 29) respondents are fewer. the disaggregated figures of the sample, using racial categories, approximately coincide with the racial proportions in the country suggesting that our recruitment strategy was broadly successful in reaching many parts of the population. in relation to impairment, respondents were asked about the functional difficulties they have because of a health problem, using the washington group short set of questions. overall, it was found that of the 1857, approximately 71% (n = 1330) of participants had more than one functional difficulty. further analysis reveals that a large proportion of the sample indicated having difficulty (some difficulty, a lot of difficulty or cannot do) with walking and climbing steps (46%, n = 860), 36%(n = 675) reported difficulty remembering or concentrating, 36% (n = 659) had difficulty with self-care, such as washing or dressing and 33% (n = 621) had difficulty with seeing even when wearing glasses. fewer respondents indicated difficulty with hearing even when using a hearing aid or similar assistive device (29%, n = 544). others reported communication difficulties with regard to being understood even when using their home language (28%, n = 541) (see figure 1). figure 1: washington group short set questions: numbers indicating difficulties within six domains (n = 1857). thematic results the data are presented in relation to the key themes that were explored in the survey. economic impacts when asked about the single worst thing about lockdown, the most commonly given answer was the economic situation, reported by 43% of participants. this was more than double the next most commonly reported answer, which was the lockdown restrictions on movement (20%). some of the questions asked the participants directly about the impact of the pandemic on their economic situation. other questions asked indirect questions on the same theme – for example about the impact on accessing food. in general, the data shows that, as might be expected, the pandemic and lockdowns negatively affected the financial situation of many people with disabilities. three quarters (76%) reported that because of their financial situation, as a result of lockdown measures, they now have difficulties ‘paying for my living expenses’. only 6% of participants did not agree with this statement. the remaining participants either do not know (4%) or neither agreed nor disagreed (14%). when asked specifically about their disability-related expenses, 49% felt that their financial situation was now worse than before covid-19 as income was less or disability-related expenditure had increased. around 44% felt that their situation was the same, but only 4% said their situation had improved. the remaining 3% responded that they did not know. however, looking ahead, most participants were optimistic, as 51% did not envisage their financial situation worsening in the next few months. a smaller proportion (39%) were concerned that their financial situation was likely to become worse, while 10% responded that they did not know what the future would hold. the respondents reported their employment status at the start of lockdown on 27 march 2022, 37% (n = 688) being in some form of employment, including self-employment, while 35% (n = 650) indicated being unemployed. around 11% were physically unable to work, while others were pensioners and students or were doing unpaid caring work. with regard to how the pandemic affected the employment status of participants, responses to a multiple response question indicated that 13% (n = 241) of the total sample (n = 1857) reported being made redundant because of lockdown measures. a further 11% (n = 204) of all participants reported having had their income reduced – meaning they were doing the same work for less money. as a result of the nature of multiple response questions, there may be overlaps in the responses, suggesting that those who were working for less money may have also experienced losing their jobs eventually. similarly, those who lost their jobs may have obtained jobs later for lower pay. the impact on employment (losing employment or being paid less) made running out of money a reality for some participants. the data suggest that this economic impact resulted in many participants also facing food insecurity and may have also affected the ability to secure products or services. when asked about events that were not normally experienced but had been during the pandemic, 39% of participants reported that they had gone to bed feeling hungry, and the same number reported someone in their house having gone to bed hungry. forty per cent said they had run out of money to buy food. shockingly, at the time of the survey, and despite 15 months of government and ngo interventions, 29% of the respondents reported that they or somebody else in their household had gone to bed hungry during the previous seven days prior to completing the survey. interrupted access to electricity at home (42%) was reported as an unusual event by 42%, despite south africa’s long energy crisis. running out of soap or sanitiser were also reported as unusual events by 36% of the respondents. however, from the data it is unclear if the access to these products had become worse because of personal economic challenges stemming from the pandemic or wider challenges such as the supply of products that became scarce during the pandemic. some respondents observed that they needed soap and sanitiser because of specific disabilities and others found that the lack of electricity prevented them from charging assistive devices that subsequently isolated them socially (a lack of mobility and inability to hear). when these multiple response questions (respondents could select more than one answer and thus the total number of responses does not coincide with the total sample size) are disaggregated by gender, a larger proportion of men (44%, n = 519) compared with women (30%, n = 195) reported that they went to bed feeling hungry (figure 2). men (49%, n = 576) are more likely to experience problems with electricity at home than women (31%, n = 201), and men (40%, n = 477) compared with women (14%, n = 90) were less able to get public transport when needed. a larger proportion of men (49%, n = 580) than women (25%, n = 165) ran out of money to buy food. a disaggregation by race indicated that a larger proportion of black african people (44%, n = 683) compared with mixed race (18%, n = 17), indian people or asian people (10%, n = 3) and white people (7%, n = 12) have gone to bed feeling hungry. figure 2: the coronavirus disease 2019 economic impact of lockdown (n = 1857). perceptions of services and support respondents were asked if they were able to receive all necessary disability-related support during the pandemic, and 45% said they did, while 42% said that they did not and 13% were uncertain. possible reasons for uncertainty included reliance on others to acquire the necessary supplies and services for them, and respondents’ unawareness of whether these people were struggling to get necessary supplies and services. under half (45%) reported that the pandemic and subsequent regulations disrupted their disabilityor impairment-specific services, including access to medication and psychological or physical rehabilitative therapy. approximately 40% reported no interruption in these services. around 19% had not sought any such services since the pandemic began. in a subsequent question, 51% of respondents reported approaching and receiving services from opds and ngos during the study period. overall, the demand for services from government was low (37%), with civil society organisations (25%), private facilities and service providers (8%) and family and friends (20%) providing most of the needed assistance as other support mechanisms weakened or failed people with disabilities. the data reported here – running out of money and being hungry – were new experiences for people with disabilities and would have increased pressure on the non-profit sector to provide support. one crucial challenge related to the government’s initial attempt to provide food for those in need was that the messages were either not reaching people with disabilities or they were unable to access the supply points. in another instance, 31% of respondents reported being unable to access public transport at times and turning towards opds for support. around 60% (n = 1112) of respondents reported the need for a professional carer or somebody to support them with daily living. of this group, 73% (816) reported an interruption in this support because of covid-19 and lockdown regulations. approximately one-fifth (21%) of this group reported no interruption in caregiver support. when asked about how long carer support had been interrupted, 61% reported that this was a day, 10% reported a week, 18% reported interruptions of a couple of months. worryingly, for 9% of the respondents these interruptions were continuing at the time of the survey. this might be because of a persistent fear of their carers catching the virus and transmitting this to respondents, most of whom had not been vaccinated at the time of the survey. perspectives of government provision and responses the authors asked respondents to indicate their perceptions about the state and others (ngos) handling of the pandemic and support offered. perceptions were the same for the government generally, for the government health and social sectors and for the ngo sector. approximately 50% of the respondents felt that all three sectors were doing a bad job and around 30% felt they were doing a good job, while 10% were ambivalent about the performance of these three sectors. the authors asked whether respondents perceived that the government had adequately taken their specific needs into account during the pandemic. somewhat surprisingly and seemingly in contradiction – given that over half had been very critical of the government generally and of the health and social sector – 55% reported that the government had taken the needs of persons with disabilities into account. on the other hand, 18% felt that this was not the case; 7% did not know and 20% reported uncertainty in response to this question. however, when the data are disaggregated by the respondents’ personal income, it shows that the higher their income the less likely the respondents are to agree or strongly agree that government had taken the needs of persons with disabilities into account (figure 3). for example, 77% (n = 183) of those respondents earning less than r561.00 per month and 50% (n = 121) earning r562.00 to r1 227.00 per month thought government had taken the needs of persons with disabilities into account when compared with those who earn r5 001.00 to r10 000 (26%, n = 42) and between r10 001.00 and r20 000.00 (35%, n = 37). this difference may be a result of people with higher incomes expecting government to do more, but having less actual experience of using government services, while those with lower incomes and being more reliant on government for support and possibly more experienced in the type of services that are actually delivered in ‘normal’ times are more accepting of the limited interventions. uncertainty is clarified in some of the qualitative responses, there being an impression that while government had put some interventions in place these were largely not known about and poorly communicated. food relief and food parcels were indicated as an example. figure 3: government had taken the needs of persons with disabilities into account by income (n = 1857). those disability-specific interventions that were known, included the increase in social grants for those already receiving disability and other social grants and the introduction of the social relief of distress grant (srd) of r350.00 per month (a very small amount). of those respondents receiving grants, 33% were getting the srd, 31% received the disability grant, 10% the old age pension and 1% the care dependency grant for children with disabilities. at the age of 18 years the disability grant replaces the care dependency grant, and at the age of 60 years the pension replaces the disability grant, although the values are the same. those receiving the srd were not receiving any disability or old age grant indicating that a third of the respondents would not ‘normally’ receive a disability grant. similarly, by receiving the srd it is evident that these people were unemployed at the time. of the respondents, 35% reported being unemployed and only 37% reported either self-employment, fulltime-, parttimeor casual employment at the start of lockdown in march 2020. respondents strongly supported the idea of disability-disaggregated monitoring during disasters and during this pandemic (83%), so that people are identified to receive assistance. many felt the onus on addressing the disadvantages they experienced during the pandemic appears to have been on the under-resourced network of opds, who tend to support many of those with disabilities who fall outside of the government system. many opds do not receive government funding on a regular basis but rely on the goodwill of private sector and foundations to deliver services. there was a general feeling that government could do more. it was observed that communication should be improved and accessibility features should be inherent in news broadcasts and other televised information about this and other disasters. while south african sign language (sasl) was available on television news broadcasts and has been for some time, some said they could not see the sasl interpreter and others needed captions as they did not understand sasl. it was also found that the disaster regulations and other interventions were largely focused on the control of the virus and failed to recognise the negative and disruptive effects that the measures themselves would have on people with disabilities. the government failed initially to recognise the importance of regular disability-services for people with disabilities and shut these down during the first 2 months of the pandemic and only later reopened them. of the approximately 150 disaster regulations promulgated up to july 2021, very few focused on persons with disabilities, and these had a strong emphasis on protection from the virus and the distribution of protective gear and equipment to safeguard health and social workers and teachers and learners (authors’ own reference). such actions seem inadequate when considering the needs of the many people with disabilities who fall outside of the health and social system and would not be engaging with state employees or attending school. given the speed with which government imposed a very harsh lockdown on all its citizens most people were unprepared, a situation that led to panic buying of commodities anticipated to be crucial during the forthcoming months. after the first 2–3 months transitions were rather rapid and fluctuated as south africa entered different ‘waves’ of infection and levels of lockdown. more than 50% of respondents felt that level 3 and level 3-adjusted were the most acceptable levels because movement was not curtailed and necessary services were again available. the majority considered other levels to be either too severe or too relaxed. demand for coronavirus disease 2019 vaccine slightly more than 80% of respondents knew of somebody who had been infected by the virus, of which 36% included the respondents themselves. when asked how likely they believed it was that they might get infected with covid-19 in the forthcoming months, almost two-thirds (64%, n = 1192) of the respondents stated this was unlikely. on the other hand, just under a quarter (23%, n = 422) felt there was a chance of becoming infected. other respondents were uncertain (11%). most male (71%) and female (73%) respondents felt there was a little chance of infection in the forthcoming months. despite a low fear of infection, 85% of the respondents indicated a strong keenness to be vaccinated, while only 7% were unwilling. disaggregation by gender shows that a slightly greater share of male respondents (87%) than female respondents (81%) were willing to be vaccinated. at the time of the survey, 5% of all respondents had been vaccinated. this small share of vaccinated respondents is because age cohort was the only criteria used to schedule the roll-out of the south african vaccination programme at the time. there was some objection by respondents to this approach. qualitative responses illustrate that many objectors wanted the vaccination as a means of preventing infection in the context of feeling at increased risk. while respondents acknowledged that having an impairment did not make all or even most of them susceptible to infection with the coronavirus, there was a recurrent view in the qualitative data that people felt they needed it because they were at high risk of infection for a variety of reasons, not necessarily linked to clinical conditions. some were more at risk because of specific and severe types of impairments, often because of immobility and related secondary conditions (e.g. respiratory vulnerabilities or being immunocompromised). however, others may have felt at risk for other non-clinical reasons related to their living situation or to their pre-existing disadvantage. for example, some respondents lived with and relied on people for their daily care and these people had become infected with the coronavirus. these respondents felt they were facing a greater risk than other people and wanted protection from the virus because of their reliance on those who were or had been infected. please amend to interestingly, some respondents had managed to get vaccinated although they were not officially eligible on purely age criteria. social and emotional impacts clearly most south africans, whether living with disabilities or not have been negatively impacted, both emotionally and psychosocially, by covid-19 and the intervention measures introduced to control the virus and prevent contagion. the situation for persons with disabilities is often exacerbated. in the first 17 months of the pandemic, respondents had a range of emotional experiences including anger, frustration, loneliness and boredom. a total of 60% reported feeling stressed, while 52% reported fear and 54% observed feeling depressed. only 23% indicated feeling happy at any stage during the first 17 months. these reports are unsurprising. people with disabilities had lost jobs that are often difficult for them to get in ‘normal’ times and had experienced salary cuts, thus economic hardship had an emotional impact. as reported here lockdown and mitigation interventions badly disrupted access to general needs, such as food, hygiene and electricity, as well as access to crucial rehabilitation, medication or healthcare services. those reliant on assistive devices encountered challenges in keeping these in working order during the first two levels of lockdown when regulations closed relevant service providers. such a situation is deeply depressing as these devices are necessary for daily functioning, communication and socialisation. those living alone or those who depended on carers for daily living had these interrupted by needs to self-isolate, curfews, and associated travel restrictions. they subsequently experienced lengthened periods of loneliness. others depend on rehabilitative care and necessary medication and the inability to access these services because of their temporary closure or inability to access transport could result in the heightening of psychosocial and physical impairments. such circumstances inevitably place great psychosocial and emotional toll on some people with disabilities who need these services to function daily and ensure a consistent level of independence and dignity. discussion looking at the analysed data it is clear that the findings echo those from many other studies carried out globally, with different populations and using diverse methodologies as outlined here (brennan et al. 2020; christensen 2020; mckinney et al. 2021; meaney-davis 2020). the prediction made by many authors and agencies at the start of the pandemic, that people with disabilities were at risk of exacerbated exclusion and disadvantage has sadly been shown to be prescient globally and in south africa. this study is believed to be the largest looking at the experiences of people with disabilities in a single county, certainly in africa but possibly globally. other studies have focussed specifically on particular sectors such as health, education, employment or social protection and relief (banks et al. 2021). some have looked at specific subpopulations, for example, by impairment, gender or age. the authors considered a variety of options to collect data on a wide spectrum of topics and a broad range of people. the questions about economic impacts, service interruption, vaccine access and people’s perspectives of government intervention all show predominantly negative impacts and that notable proportions of people who had previously not experienced such concerns, experienced unusual and upsetting events such as not being able to get their usual care/assistance, disability specific services or being hungry. it does seem (unsurprisingly) that people’s perceptions are somewhat related to their own financial status and their expectations and previous experience of services and may also be related to the type and severity of their impairments, although it has not been analysed for this article. experience of change of circumstances and the extraordinary situation of a pandemic was new for everyone, and thus it is perhaps predictable that people will have an array of ideas about what government could or should do in response. those with more awareness of human rights statutes and rhetoric might be more critical and have a stronger sense of entitlement to equal provision. others may be rather resigned to inequality and have internalised the oppression they often experience. this might explain the sometimes contradictory responses to questions about the adequacy of government responses. there is a strong sense of being left out or forgotten and that the service providers, whether government or others do not consider their needs specifically enough. there is a perceived need for prioritisation for vaccinations and there is awareness of increased clinical risk of catching the virus for some with underlying health conditions causing or arising from having an impairment and having a weakened immune system. impairment specific concerns emerge relatively rarely, but this might be because the survey did not probe on these in depth. however, it is observed that people with certain impairments found it challenging to access information and updates and communal service points and other facilities where support was delivered. although sign language supported information is available on tv, there is a need for this to be more widespread and for other inclusive, adapted formats. significant numbers are seemingly overlooked by primary grants, while a share of this population reported high levels of food insecurity and hunger, employment challenges and high levels of worry and stress. although they are included in general anti-discriminatory legislation this has not protected them specifically enough during the pandemic. specific rights as indicated in the bill of rights appear to have been ignored. it is observed that the right to dignity, as indicated in section 10 of the constitution, has been overlooked. during the early months of lockdown, some respondents were unable to receive rehabilitative treatment or get their assistive devices serviced or repaired. emergency regulations prevented carers from going to their clients, leaving them alone without assistance. furthermore, basic rights to access healthcare facilities and services, sufficient food and water, and social security were denied, with a large share, including other household members, going to bed hungry. this neglect of the specific needs for disability rights to be intentionally upheld continues a pre-covid-19 feeling of exclusion and loss of dignity. people with disabilities reported isolation from friends and family. the barriers they encounter in accessing information and health services were intensified during the pandemic as they were not seen as a priority for access to health and other services (mckinney et al. 2020) in contrast to other groups such as the elderly, as was evident in the vaccine programme scheduling criteria. having to shift from reliance on professional or outside care, to dependency on family, friends and opd personnel as they attempted to address the gaps and secure needed goods and services seems to have placed additional pressure on all. reflecting on the authors’ choice of approach and methodology and given the restricted range of options available because of the covid-19 regulations, they feel that they have achieved their aim of gathering a sizeable and demographically inclusive set of data about people with disabilities’ experiences of covid-19, lockdowns and their implications in south africa. the decision to run the study as a partnership between two academic research institutions with different disciplinary strengths, alongside a national umbrella organisation has proved to be a good one. the collaboration between the three organisations produced thinking and working that was more than the sum of its parts. to a large extent the authors were not only in agreement about some basic principles (e.g. about the need and purpose of the study, disability-related language, inclusive practice etc.) but also found that in discussions at various points in the process, they learnt more and interesting things about their respective perspectives and priorities. for example, the ncpd contributed vital knowledge of the range of living situations of people and about opds and their networks. the ids and hsrc understand the complexity of trying to reach a dispersed and diverse population to complete the survey across the country. reciprocally, the two research organisations specifically contributed an international perspective on disability inclusive research and skills in storing and analysing quantitative data, respectively, (ids and hsrc), as well as having joint understandings about the nature of research and an interest in practical and action-orientated explorations with explicit links into policy formation. this was a new collaboration and a very effective one. joint dissemination activities were productive and enjoyable. given more time the authors would have liked to spend more time in exchange of ideas between the three partners, performed more joint analysis and writing and have had more direct contact with some of the respondents to validate their analysis. limitations of the study while the authors believe this is the largest and most comprehensive known study to explore the experiences of people with disabilities in a single country worldwide, several limitations were identified, which should be recognised when interpreting the results. the scheduling of the survey may have had an impact on its results. the survey ran between july and august 2021, and at this time, south africa experienced violent protests and sociopolitical unrest (vhumbunu 2021). this extraordinary period may have influenced who was able to participate and how they responded. people may not have been able to purchase data. some real threats to their lives might have affected their willingness to respond to the survey at all. emotional and psychological questions may have been viewed negatively. completing a survey would not be a priority in such circumstances. also, the covid-19 regulations themselves in place at the time of the survey may have had an impact on response rates as support would have been interrupted. the methodology required access to and familiarity with online technology and connectivity to participate. despite every effort to make the survey accessible, it is possible that certain groups (e.g. people with visual or cognitive impairments) may have found it harder to participate. also, participants with little literacy or who are very poor may have found the online nature of the survey to be a barrier. it is likely that more technologically literate potential respondents felt more able to participate. this is suggested by the education profile of participants which is higher than that of the general population and the proportion of relatively young people (18–40 years old). participants with higher education levels may also have found it easier than the general population to access information about covid-19, so their responses about this may be more positive than for other people. in addition, the spread of respondents across the country was uneven, so although all south african provinces are represented, the majority of respondents are from gauteng (63.8%). also important to note, the survey was largely quantitative in nature, providing limited access to knowledge about the contextual living conditions of the respondents. a further constraint is that the survey was only in english and this may have excluded some people. further qualitative and participatory inquiry may address such knowledge gaps. finally, in this study there is no indication about how many people received the survey but chose not to respond and what the reasons for this were. conclusion predictions were made at the start of the covid-19 outbreak that people with disabilities globally would be at risk of exclusion from relief and mitigation services and would also experience an increase in the many disadvantages they so often experience in ‘normal’ times. there was a fear that the substantial progress in improving lives of people with disabilities that has been made in recent years, such as increased recognition of the equal rights of people with disabilities, recognition as citizens, adequate access to services within mainstream provision (e.g. in health, rehabilitation, education, employment) would be reversed. hard won victories in relation to these and other aspects would then have to be fought for again. however, on the positive side perhaps, the evidence from our study and others may raise awareness of these negative consequences and prompt more disability inclusive policies and practices globally (humanitarian disability charter 2022; iasc 2019). across contexts one should be able to make the case for new and revised anticipatory policies and practices, which have disability inclusion built in as standard from the start, across sectors (wickenden et al. 2021). specifically in south africa, if a new framework on responses to disasters and crises is being formulated, the need for which has been recognised by relevant ministers, then there is now no excuse for ignoring the evidence that people with disabilities have suffered more than most from the direct and indirect consequences of the pandemic. better outcomes in future can only be achieved with improved disability inclusive planning and specific support for people with disabilities in times of crisis. lastly, the key recommendations, which emerged from the data are summarised as follows: inclusive disaster management and mitigation planning processes are required. government must immediately address the gaps that currently exist in the disaster and risk framework for people with disabilities to ensure that they are explicitly included in the discussions about pandemic mitigation and the recovery processes and that their specific needs are catered for in legislation and regulations. collaboration between state and organisations of people with disabilities (opd) is essential to ensure that plans are always disability inclusive. inclusive baseline data collection: data on people with disabilities is fragmented, preventing comprehensive mapping and tracing that could enable disability-inclusive interventions. cross-sectoral inclusive service provision: interventions during crises must ensure accessibility to necessary rehabilitation, care, health services, food and nutrition security, and that access to hygiene measures is not interrupted for people with disability. the psychosocial support: a calculated effort must be made to address the negative impacts of stress, isolation, interrupted therapy, carer, rehabilitative and mental health services and economic challenges that the pandemic has placed on people with disabilities. communication challenges: there is a need for improved means of communication with people with disabilities about the nature of the crisis, regulations and provisions available. some found it challenging to communicate with staff at communal service points and other facilities where support was delivered. others, those with sensory impairments, struggled to obtain information and updates via television. while sign language supported information is available on tv, there is a need for more of this and other inclusive, adapted formats for people with specific needs. for example, many speeches are prepared in advance and could easily be delivered with closed captions and with voiceover for those who do not understand english or sign. finally, it is interesting to notice that these recommendations arising from our study, mirror very closely those of many other studies and agencies globally. this is in a way encouraging as we should be able to lobby with a united voice at different levels of power, influence and action to improve disability inclusive responses before the next emergent crisis. acknowledgements the authors would like to thank the following: all the participants who responded to the survey, people with disabilities in south africa and others, for their time and responsiveness to a long process, colleagues at ids, hsrc and ncpd for their inputs into the project and yamkela majikijella for assistance with the statistical analyses. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.w., t.g.b.h., and s.j.t. conceptualised, drafted and edited the article and worked on the critical revisions. y.d.d. and m.n. worked on the statistical analyses, verified the methods and interpretations of results. all the authors discussed the results and contributed to finalising the article. funding information this research was funded by a uk government (ukri) gcrf newton fund grant no. 362. data availability the data set is undergoing the curation and subsequent open access sharing process and will be available on the hsrc website by october 2023 or on request. disclaimer the views expressed in this article, and the conclusions drawn, are the authors’ own original work and neither reflect those of any other person or institution with which the authors are affiliated nor the african journal of 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12 june 2022, from https://www.who.int/news/item/29-06-2020-covidtimeline. yap, j., chaudhry, v., kumar jha, c., mani, s. & mitra, s., 2020, ‘are responses to the pandemic inclusive? a rapid virtual audit of covid-19 press briefings in lmics’, world development 136, 1–4. https://doi.org/10.1016/j.worlddev.2020.105122 http://www.ajod.org open access page 1 of 1 reviewer acknowledgement acknowledgement to reviewers in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on https://ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website and register as a reviewer. to access your details on the website, you will need to follow these steps: 1. log into the online journal at https://ajod.org 2. in your ‘user 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appropriate to each manuscript are essential elements in ensuring a timely, productive peer review process. we would like to take this opportunity to thank all reviewers who participated in shaping this volume of the african journal of disability. we appreciate the time taken to perform your review(s) successfully. akwasi kumi-kyereme bianca birdsey cindy jacobsz daleen klop diane bell diphale j. mothabeng emma mckinney ensa johnson helen suich helene loxton jean v. fourie jenna-lee procter jennifer g. kromberg judith a. mckenzie karina huus kate a. sherry lameze abrahams lauren g. wild leslie swartz lientjie van rensburg madoda p. cekiso madri engelbrecht margaret m. wazakili mark harniss martha geiger mary g. clasquin-johnson maximus m. sefotho meenakshi srivastava naaheeda allie nomfundo f. moroe olufemi o. oyewole paseka a. mosia romy parker rose richards rose cloete roshanthni subrayen sandra makwembere stephanie n. penkler steve reid suna verhoef terry j. ellapen theresa lorenzo tonderai w. shumba toughieda elloker una kyriacos victor de andrade wisdom k. mprah yolandi brink http://www.ajod.org� https://ajod.org� https://ajod.org� https://ajod.org/index.php/ajod/user https://ajod.org/index.php/ajod/user mailto:publishing@aosis.co.za about the author(s) candice a. quarmby discipline of speech-language pathology, university of kwazulu-natal, south africa mershen pillay discipline of speech-language pathology, university of kwazulu-natal, south africa citation quarmby, c.a. & pillay, m., 2019, ‘erratum: the intersection of disability and food security: perspectives of health and humanitarian aid workers’, african journal of disability 8(0), a550. https://doi.org/10.4102/ajod.v8i0.550 note: doi of original article: https://doi.org/10.4102/ajod.v7i0.322 erratum erratum: the intersection of disability and food security: perspectives of health and humanitarian aid workers candice a. quarmby, mershen pillay published: 10 oct. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in the version of this article initially published, the data and text entries in figures 1 and 2 were mistakenly published with omitted entries which presented them in an illegible format. the actual values for figures 1 and 2 are updated and presented here: figure 1: a framework for access to food in vulnerable contexts. figure 2: summary of study results. this correction does not alter the study’s findings of significance or overall interpretation of the study results. the errors have been corrected in the pdf version of the article. the publisher apologises for any inconvenience caused. abstract introduction theoretical framework research methods and design results discussion conclusion acknowledgements references about the author(s) amukelani p. mahlaule school of health systems and public health, faculty of health sciences, university of pretoria, pretoria, south africa cheryl m.e. mccrindle school of health systems and public health, faculty of health sciences, university of pretoria, pretoria, south africa lizeka napoles school of health systems and public health, faculty of health sciences, university of pretoria, pretoria, south africa citation mahlaule, a.p., mccrindle, c.m.e. & napoles, l., 2024, ‘inclusive education and related policies in special needs schools in south africa’, african journal of disability 13(0), a1358. https://doi.org/10.4102/ajod.v13i0.1358 original research inclusive education and related policies in special needs schools in south africa amukelani p. mahlaule, cheryl m.e. mccrindle, lizeka napoles received: 29 oct. 2023; accepted: 06 june 2024; published: 11 sept. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: post-apartheid, the education system shifted its focus from a segregated education system to an inclusive education system, which resulted in greater consideration of the role and function of special needs schools. in 2014 the national department of basic education developed and implemented an inclusive approach and policies to provide guidelines on the running of special needs schools (sns). the study was conducted in six sns in ekurhuleni south district, south africa. objectives: the study explored the experiences of teachers and healthcare workers when implementing policies in sns in the study area. method: this exploratory qualitative study used purposive sampling to select 13 teachers and healthcare workers for in-depth interviews. collected data were analysed using inductive thematic analysis and atlas-ti version 23. results: teachers and healthcare workers had different working experiences and understandings about inclusive education and policies, as well as their role in implementing these policies. experienced challenges included lack of training, limited resources, lack of parental support, issues with differentiated curriculum, an unacceptable teaching environment; and poor referral systems. these challenges evoked strategies such as improvising, collaborating, and referring. participants indicated that they required further training, resources, and support to successfully implement inclusive policies. conclusion: both teachers and healthcare workers agreed that resources were lacking at all sns represented. staff training was urgently needed as the current curricula at sns were differentiated for learners with physical and intellectual disabilities. contribution: findings may inform policy implementation and change in sns. keywords: special needs schools; learners with disabilities; inclusive education policy; teachers; healthcare workers; south africa. introduction an inclusive education system in south africa takes into consideration the diverse learning needs of all learners (donohue & bornman 2014). this is in line with the framework outlined in the education white paper 6: special needs education: building an inclusive education and training systems (ewp6). this policy has made provisions for improving the role and functioning of schools within the system including mainstream, full-service, and special needs schools (sns) (department of basic education 2001). special needs schools are designed to provide appropriate support for low, medium, and high level of needs of learners (directorate inclusive education (2014). special schools exist to offer maximum support to school children experiencing barriers to learning (khumalo & hodgson 2017). despite efforts and progress made to make inclusive education a reality, disability remains an overlooked issue in education especially in developing countries (mizunoya, mitra & yamasaki 2018). the type of disability and level of support required determines the type of special school required by learners with special needs in south africa (directorate inclusive education 2014). disability type includes but is not limited to physical disability, intellectual disability, hearing and vision impairment (directorate inclusive education 2014). children with disability experience barriers to learning, such as inaccessible curricula, an unsupportive teaching environment, as well as difficulties with understanding the language and strategies used (department of basic education 2001). these barriers to learning often include a lack of access to curricula, difficulties with language, and lack of parental support (manicka naicker 2018). an inclusive model of education must be implemented to ensure that barriers to learning are addressed for all learners; however, disability should remain high on the agenda (makoelle 2012). education policies were developed and implemented to convert the south african education system into a more inclusive one (engelbrecht et al. 2016). this was in support of sustainable development goal (sdg) 4, target 4.5: improving access to quality and inclusive education and ensuring that those who are vulnerable, including people with disabilities are not discriminated against and are able to access all levels of education (franco & derbyshire 2020). understanding the link between learning and health yields better academic and health outcomes (hunt 2015). it is evident that health issues can negatively affect learners’ academic performance. for example, learners with health difficulties are likely to attain poor grades, not because they are not academically able, but because of health problems not being addressed (hunt 2015). disability should not be seen as a problem that hinders education attainment; therefore, systems should be put in place to support learners with special needs (hayes & bulat 2017). this enables policies for sns such as ewp6, the national strategy on screening, identification, and support (sias); the integrated school health policy (ishp) should adequately address the needs of learners requiring extra support (mckenzie 2021). the ewp6 has established principles and guidelines to promote inclusive education. this policy further highlights the government’s plan for special schools and aims to implement inclusivity and improve quality education and service delivery through infrastructure development and resource mobilisation (department of basic education 2001). the sias provides a blueprint for identification and evaluation of learners as well as provision of relevant intervention to learners experiencing barriers to learning; including those with disabilities (department of basic education 2014). on the other hand, ishp serves as an integral part of the development of inclusive education by focusing on provision of health services in schools and helps to address health-related issues and minimise barriers to learning (doh & dobe 2012). this act involves the collaboration of the department of health, department of basic education and social development, to ensure that all schools have access to health services. policy should always be designed with implementation in mind, as this would determine the progress of the designed policy (pollack porter, rutkow & mcginty 2018). the success in executing this policy relies on the implementation process (hudson, hunter & peckham 2019). implementation of the policy at a local level should be performed by the provincial districts and aligned with both national and provincial goals (mokitimi, schneider & de vries 2018). however, policy documents are generally designed with ambiguous objectives and lack implementation guidelines thus leading to unsuccessful achievement of the intended goals (engelbrecht et al. 2016). for example, ewp6 suggests that the implementation of an inclusive education policy is cost effective. however, ambiguity is seen with regard to availability of funds so as to address issues related to infrastructure and mobilising of human resources (donohue & bornman 2014). the lack of policy clarity has presented challenges to successful implementation. a study was conducted by adewumi and mosito (2019) at fort beaufort district primary schools in the eastern cape province of south africa to explore the experiences of teachers in implementing inclusive education for learners with special needs. it reported challenges such as unclear curriculum guidelines, little support for teachers, as well as a lack of funding as the driving forces preventing implementation of inclusive education (adewumi & mosito 2019). another south african study explored the south african schools’ role in the implementation of the integrated health approach in the emfuleni district municipality in gauteng province (kwatubana & kheswa 2014). kwatubana and kheswa (2014) suggested that the integrated health approach seemed to be ineffective because of unspecified persons being responsible for implementing it in public schools. the study further highlighted the fact that there needed to be more support or involvement, between the school based support team (sbst) from the national department of basic education and parents, regarding learners requiring health services. additionally, a lack of allocated resources was shown to be a limiting factor in providing learners with professional healthcare services in all schools (kwatubana & kheswa 2014). in the city of tshwane, in gauteng province, ramukumba, rasesemola and matshoge (2019) found that compliance to the ishp was poor, because of inconsistent service delivery and a lack of participation from learners and relevant partners to ensure that this programme succeed (ramukumba et al. 2019). furthermore, zembe-mkabile (2021) highlighted that the coronavirus disease 2019 (covid-19) pandemic made it difficult for schools to offer certain ishp because of the pandemic restrictions that were put in place in 2020. difficulties encountered could be attributed to unreadiness of departments and infrastructure, as the schools had to comply with legislated covid-19 regulations. this resulted in schools prioritising only those activities that were relevant for teaching and learning, which affected the delivery of the health services stipulated in ishp guidelines (zembe-mkabile 2021). a study conducted by ntseto et al. (2021) reported that implementing the policy on (sias) was challenging because of teachers not being well trained for teaching learners with special education needs, who often lacked the motivation needed to implement the policy (ntseto et al. 2021). a study conducted by hess (2020) on teachers’ perceptions around implementation of sias in mainstream schools reported that the curriculum was rigid, so it was difficult to reach and teach all learners according to their level of needs, which impacted on access to quality education (hess 2020). according to hayes and bulat (2017), teachers in lowand middle-income countries reported that being unable to adapt the curriculum made it difficult to meet the educational needs of learners with disabilities. despite these challenges, there are schools where inclusive education is implemented successfully and is accessible to all learners with special needs (walton 2011). a study conducted in fort beaufort district primary schools highlighted the fact that support from managers, and the ability of teachers to accommodate and improvise, led to the successful implementation of inclusive education to learners with special needs (adewumi & mosito 2019). in addition, the implementation of the national school nutrition programme that is aligned to the south african department of basic education has proven successful, because of effective collaborative efforts and involvement of different corporate sponsors (zembe-mkabile 2021). taking into account challenges and achievements in implementing school health policy, it is important to evaluate and monitor the implementation process to identify barriers (hunt 2015). it has been recommended that issues arising from the implementation process should be addressed by improving the support system, provision of resources, and strengthening the involvement of different stakeholders (hunt 2015). successful implementation of the ishp involves collaboration of team members; including relevant departments, parents, and learners. a policy with clear guidelines and strategies will enable a smooth implementation process and could achieve the target goals for the intended programme thus improving learner health and academic performance (ramukumba et al. 2019). these studies conducted in south africa, mainly explain the experiences of teachers implementing inclusive policies in mainstream schools. to the best of our knowledge, there remains little investigation performed in schools for learners with special needs in the study area. therefore, this study explored, determined, and identified the understanding, challenges, strategies, and support in inclusive policy implementation by teachers and healthcare workers in the area under study. theoretical framework this study uses the bottom-up approach for implementing policy as a theoretical framework promulgated by different authors including berman (1978); hjern and porter (1981); hjern (1982); hjern and hull (1982); hull and hjern (1987); and lipsky (1978) (stofile 2008). the bottom-up approach looks beyond central planning. ‘for successful implementation, experiences of ‘on the ground’ implementers need to be taken into consideration as they can provide factors affecting implementation of policies, which can form a basis for policy change (stofile 2008). the goals and strategies of the policy must be aligned with both policy implementers and the target groups (girdwood 2013). the top-down approach to policy implementation emphasises the importance of policy clarity and directives by policy developers to ensure that the relevant goals are met (donohue & bornman 2014). this study takes the bottom-up theoretical orientation to implementing policy and argues that relevant policy goals can be met if daily experiences of teachers and healthcare workers as implementers are considered. this could include understanding the causes of policy failure as observed on the ground. their discretion at delivering policy shifts from a ‘one size fits all’ policy to a suitable context, could lead to success in policy implementation (donohue & bornman 2014). progress with policy implementation could be made if what is happening on the ground is studied and analysed. research methods and design study design the study used an exploratory qualitative design to assess the implementation of inclusive policies by teachers and healthcare workers in sns in ekurhuleni south district. in this study, the exploratory qualitative approach enabled the researcher to gain a clear insight of the phenomenon under study and allowed participants to answer questions based on their personal and professional point of view, and experiences when implementing inclusive policies (hammarberg, kirkman & de lacey 2016). qualitative research uses the scope of gathering people’s personal understanding and opinions about concepts (taylor, bogdan & devault 2015). the rationale for adopting a qualitative approach is motivated by the need to comprehend the experiences of teachers and healthcare workers in implementing inclusive policies in sns, and further gain a deeper perspective of their daily challenges and coping strategies. study setting the study was conducted in sns in ekurhuleni south district, gauteng province, south africa. ekurhuleni district is situated to the east of the city of johannesburg. it falls under the ekurhuleni metropolitan municipality with a population of approximately 3 379 104 as recorded in 2016 (cooperative governance and traditional affairs 2020). there are two main school districts, namely ekurhuleni north and ekurhuleni south, which together include approximately 420 schools. this study was conducted in six sns located in ekurhuleni south district (department of basic education 2013). these sns offer a specialised curriculum addressing learner needs for those with physical disabilities, intellectual disabilities, and those who are hard of hearing (department of basic education 2014). study population and sampling method teachers and healthcare workers (n = 13) were recruited from these six sns in the study area to participate in the study, with the selection criteria that they had been employed for a period of 2 years or more in sns. this study used a purposive non-randomised sampling method, which allowed the researcher to gather data from participants regarding their experiences on inclusive policy implementation (etikan, musa & alkassim 2016). guest, bunce and johnson (2006) reported that a saturation level of 92% in qualitative research can be reached with 12 in-depth interviews. when there are no further dimensions on the problem, the data are considered to have reached a saturation level (vasileiou et al. 2018). data saturation in this study was reached with 13 participants. data collection in-depth interviews (n = 13) were conducted face to face in english. they consisted of open-ended questions listed in an interview guide that had been approved by the university ethics committee (ethical clearance certificate number: 538/2022). each interview consisted of a series of open-ended questions related to understanding, challenges and strategies and support required with inclusive policy implementation at sns. only two participants agreed to audio recordings. the others (n = 11) were recorded manually in writing. interviews were conducted by the principal researcher (first author), between 14:00 and 16:00 in the office of the principal at each sns. each in-depth interview lasted approximately 30 to 40 min. data analysis this study used thematic analysis and data were coded in accordance with questions answering the study objectives. themes and patterns were observed, organised, categorised, and conclusions were drawn (braun & clarke 2006). this process follows the steps or phases outlined for thematic induction: including familiarisation with data, coding, generating and reviewing themes, as well as defining and naming themes (herzog, handke & hitters 2019). quotes were also used for emerging and uncategorised themes (mcmillan & schumacher 2010). the qualitative software analysis programme, atlas.ti version 23.2.1 (2023) was used for open coding of data during the analysis process, for storage and management, safe keeping, as well as manual analysis and interpretation (friese, soratto & pires 2018). ethical considerations the study received ethical clearance from the faculty of health sciences research committee, university of pretoria with approval number 538/2022, and gauteng department of basic education, with approval number 2022/387. written consent was obtained from the district educational office, as well as the principal, and participants in each participating school. confidentiality of data was maintained by coding responses anonymously. only the researcher had access to the data that are kept in a secured database. personal identifiers such as names of participants and names of the schools were removed from the research documents and assigned with key codes to ensure that participants remained anonymous. results demographics table 1 shows demographic information of participants (n = 13) representing the six sns in the study area. participants represented more than one profession: for example, healthcare worker and teacher. table 1: demographics of participants. experiences of working in a special needs school the teachers and healthcare workers described their experiences at sns as challenging, ‘frustrating’, ‘interesting’, and/or ‘exciting’. most participants reported that working in a special school had been challenging and frustrating because of lack of a specific curriculum for learners with disabilities as they have to constantly review lesson plans. one of the participants indicated that moving from a mainstream school to the sns was very frustrating because she had to review her lesson plans, which was not easy; she said: ‘i have experience working in a mainstream school for foundation phase learners, so coming here for the first time…it was really frustrating because i just went to class expecting to teach and learners will just look at you and not understand what you mean or what you are writing. it was the first time i found out the whole class has a problem understanding. so, i had to review my lesson plans and there was no dcaps (differentiated curriculum and assessment policy statement) at that time, so it was not easy for me.’ (participant 3, teacher, age group 51–60 years) on the other hand, one participant reported that it was difficult at first; however, with time he learnt how to proceed and he is now managing to work effectively in the sns. one healthcare worker indicated that it was an interesting experience for her as she came from the department of health to an environment where children had different disabilities and learning needs. she commented: ‘i am a nurse that loves her job, the environment was interesting, and i stayed here because of my passion in these 8 years.’ (participant 1, healthcare worker, age group 51–60 years) admission criteria in special needs school all participants reported several uncertainties about the admission criteria. the type of disability that ought to be catered for by their own sns was not necessarily observed but rather other disabilities were included in the admission criteria. for example, participants from sns for learners with physical disabilities, and/or mild intellectual disabilities, showed concerns that learners with other disabilities such as autism, and profound intellectual disability are currently admitted, whereas the school does not cater for them. one participant said: ‘it was supposed to be for physically challenged but currently i feel like it caters for both physical and nonphysical because we have few learners that have severe intellectual disability (sid) and profound intellectual disability (pid).’ (participant 8, healthcare worker, age group 25–30 years) inclusive policies: understanding of inclusive education participants explained their understanding of inclusive education based on inclusive policies. most participants mentioned that their understanding was that inclusive policies were about providing learning opportunities to learners; despite their challenges; and that they should get the same education as learners in mainstream schools with no limitations. one participant said that her understanding of inclusive education is based on the ewp6: ‘education white paper 6 caters for all learners, as a school we need to be seen supporting them because our constitution says every child has a right to learn so it gives the opportunity to learners regardless of the challenge. its emphasis is on their strength and that we must support their skills.’ (participant 5, teacher, age group 51–60 years) another participant described ewp6 as an inclusive policy that addressed the imbalances of the past and made a great impact: ‘it was to address the imbalances of the past; politics played a role there because learners were not getting education based on the disability, so they had to make changes for every learner to have access, irrespective of their disabilities.’ (participant 6, teacher, age group 51–50 years) some of the participants based their understanding of inclusive education on the processes to be followed during the implementation of the sias policy, which includes screening, identification, assessment, and support. of which, most of the participants indicated that they knew what the sias policy is but could not explain it as they did not fully understand it. only two participants showed their understanding of what the sias policy was for sns. one of the participants showed his understanding of the sias based on the benefits it brought for the school. he reported that since implementation of the sias policy, there were no incorrect placements of learners in the school: ‘with sias, we as the department we are benefiting big time. we are no longer look at a child with face and say this learner should be at special school or not. the psychological assessment report helps the department for proper placement.’ (participant 6, teacher, age group 41–50 years) only two participants based their understanding of inclusive education on ishp; however, they could not explain fully what it entails. two participants commented as follows: ‘i think with integrated school health policy is inclusive in a sense that as lsen or rather special schools, we need to be seen working with the health department. is a collaboration part of it; for example, if a child needs to be referred, they can be seen by a specialized person from health?.’ (participant 5, teacher, age group 51–60 years) ‘i am aware of such policy although i am not sure of the contents of the policy. but i think it means the therapists and teachers work together to assist the learners.’ (participant 6, teacher, age group 41–50 years) some of the participants (seven participants) based their understanding of inclusive education on their role in implementing inclusive policies. they explained that their role was to implement inclusive education and policies and to ensure that support is given to learners in need. one participant said: ‘my role is to make sure that the policies achieve their objectives: i implement the strategies as a teacher.’ (participant 3, teacher, age group 51–60 years) challenges with policy implementation six key aspects were identified from the policies to illustrate the challenges experienced when implementing inclusive policies. the key factors needed for implementation included: differentiated curricula, training opportunities, limited resources, health education and promotion, provision of health services, school environment, and type of disability in a learner. differentiated curriculum two ideas emerged when it came to the differentiated curriculum: the time factor and lesson planning. specifically, dcaps looks at equipping learners with the necessary knowledge and skills for self-fulfilment and participation in the community. four teachers revealed reporting time as a serious challenge when it came to the differentiated curriculum. they highlighted that they did not think that the policy makers took into consideration the timetable when designing the curriculum for sns learners. they reported that having to plan lessons for each learner was time consuming: ‘they want us to do things their way not children’s way; and it’s a lot of work for the learners.’ (participant 7, teacher, age group 51–60 years) ‘the curriculum says we need to teach them 20% theory and 80% skills, and i need to teach them 3 subjects a day; of which is a problem in one day.’ (participant 3, teacher, age group 51–60 years) they further reported challenges with adapting lesson plans to suit the needs of each learner, as learners with different disabilities and learning barriers were included in the same class. what exacerbated the issue was not having assistant teachers or class aids. one of the participants emphasised that the standard of education changed when they adapted the curriculum because of unclear guidelines on the adaptation process: ‘the challenge is with the lesson plans; we need to plan for individual learner and differentiate for each and to be honest the standards of the education we give drops. the level of functioning of the learners affects the quality of education we give.’ (participant 2, teacher, age group 50–60 years) training opportunities respondents were unsure about their roles. certain participants received training on the policies under study, namely, ewp6, sias, ishp, while others did not receive training. how they accessed training was also different. they also felt there were questions about the impact that lack of training had on implementation of policy. table 2 illustrates the findings and the number of times a code (key word or phrase) was used during the interview. the higher number shows how frequently the code was used. table 2: a summary of training findings (n = 13). as indicated in table 2, only four participants received training on sias policy and two on ewp6. none of the participants reported having received training on ishp. participants who reported that they had not received training indicated that lack of training affects how they support the learners. without training, they are not aware or sure of what is expected from them. instead, they end up doing what they think is right. one of the participants reported that she struggled in class because she was not trained for teaching at a sns and it was a challenge. on the other hand, participants who received training (n = 6) indicated that it had helped them in knowing how to go about supporting the needs of the learners and that guidelines in the policies show exactly what needs to be done. of those participants who received training, only two received training on ewp6; four on sias, and no participant received training on ishp. there was however, one participant who reported that she received training on sias policy and still found the training not effective. she said: ‘yes, only sias but i feel like it was not effective because it was done in one day. most examples they were making during the training were not relevant to our school.’ (participant 10, healthcare worker, age group 31–40 years) another participant who reported having received training opined: ‘the training was vague; this train a trainee is not working. it seems like the people who are doing the trainings they themselves do not understand the policies. it affects everything in implementation. i think people who draw up these policies must do the trainings.’ (participant 13, healthcare worker, age group 31–40 years) participants who reported having received training a long time ago felt that the lack of continuous training and being updated on the revised policies affected both knowledge and understanding about implementing these policies. limited resources human resources and assistive devices were revealed as limited at these schools. the majority of participants (n = 7) reported that there was a shortage of physical human power to assist both in the classroom and with therapy. healthcare professionals (therapists) reported that they are limited in schools and the demand to meet learner needs is high. this was supported by one of the school principals when he said the following: ‘we don’t have enough therapists. the posts are there but it is difficult to fill them or to retain current therapists we have due to incentives.’ (participant 4, teacher, age group 41–50 years) on the other hand, teachers reported that being the only one in class, with no class assistance is challenging, when they prepare lesson plans and focus on individual learner needs. another participant reported with frustration that they do not have a social worker in the school, yet the learners have psychosocial issues and they do not know what to do in such a situation. the availability of expensive assistive devices and the lack of information on how to use the devices effectively was also seen as problematic. healthcare workers reported that the assistive devices they are supposed to use are expensive, but schools, sponsors, and parents often end up buying cheaper ones with poor quality, which affects delivery of therapy. another challenge mentioned, mostly by teachers, is that they do not know how to use the assistive devices as they have no background in health sciences. one participant said: ‘we do struggle with assistive devices. we do have the money and we can and we do buy them, but we do not know how to use them.’ (participant 4, teacher, age group 41–50 years) health education and promotion most of the participants (n = 11) reported to be fine with health promotion and education in the school because of working collaboratively as a team of teachers and healthcare workers. a minority of participants (2 out of 13) reported having challenges with promoting good hygiene with the learners because of little to no involvement of parents. another challenge reported was that there were no proper referring channels for learners and this affects interventions that the learner is meant to receive from this, two challenges emerged, namely a lack of parental involvement and poor referral channels. provision of health services five healthcare workers were interviewed and they reported a lack of resources, space restrictions, inconsistent skills offered to learners in the school, a lack of parental involvement and not having enough time and enough therapists to cover all learners in the school as factors that affected the provision of effective support. two participants from two different schools reported that they needed more resources to support learners that initially were not catered for by the schools. they further explained this challenge in the following words: ‘we do not have resources to treat sid learners. we end up taking from our pockets to get the little resources we need for a learner. we have a learner with autism, and we do not have the resources to support the learner.’ (participant 8, healthcare worker, age group 25–30 years) three of the five participants who were occupational therapists showed great concern around the level of available skills in the school. one participant said: ‘skills, if i was to rate it, i would give it zero. it is so sad for our learners; the skills are in the classroom. let me give you an example, there is a salon class and learners are placed there, but there are learners that cannot do beauty things, but they are forced to do it by just being in that class. then it’s needle work but because you are placed in that room you are forced to do needle work.’ (participant 11, healthcare worker, age group 31–40 years) one of the participants said the following about the frustration with space restrictions: ‘i will talk about space restrictions. as speech therapists in the school, we don’t have an optimal treatment room, we are giving therapy in a “computer lab” which is also our office space. we get to alternate when we see learners and we don’t do group therapy at all. the whole space thing is challenging and affects how we give effective therapy, the environment is not conducive.’ (participant 13, healthcare worker, age group 31–40 years) the school environment almost all (n = 12) of the participants indicated that the sns where they worked could support learners and that it was accessible to learners. some of the participants (n = 4) however reported challenges with maintenance of the infrastructure and revealed that newly revamped toilets and showers were not suitable for learners with physical disabilities. one participant reported that the school is not accessible for any learner with physical disabilities: ‘we do have 3 or 4 learners with physical disabilities, and we don’t have a disabled toilets to cater for them. we must assist the learners to the toilet. the toilet is so small, and we have to go inside the toilet with the learner to make sure they don’t fall inside. another challenge is that toilets are far from the classes. it is good for learners with sid not for the physical disabled.’ (participant 11, health care worker, age group 31–40 years) one participant had concerns about the safety of the school as it is built on dolomite land, which can cause sinkholes, putting everyone in the school at risk: ‘the only challenge i have is that the school is built on dolomite land, we are getting unsafe every day. we have learners and hostel workers that are left in the school every day on land that is not safe. this is a known problem for years, but nothing has been done, they must do something very fast.’ (participant 13, health care worker, age group 31–40 years) disability type as a factor to implementation most of the participants (n = 7) indicated that disability of the learners does not affect the implementation process of policies, as provision is made for them in the schools where they are placed. on the other hand, some participants (n = 5) reported that inclusion becomes a challenge when there are wrongly placed learners as they cannot offer optimal support. figure 1 shows an atlas-ti graphic illustration that is a summary of challenges. figure 1: challenges with inclusive policy implementation. alternative strategies employed during the analysis of the interviews, three alternative strategies emerged. these were collaboration, improvisation and referral as alternatives to resolve the challenges faced by participants. figure 2 is an atlas.ti graphic illustration of the three themes. figure 2: alternative strategies. as illustrated in figure 2, the majority of participants (n = 8) indicated collaboration within the school is a support mechanism that has been beneficial to achieving the intended goals of the policies. they further indicated that despite having limited resources staff (both teachers and health workers) improvise with the curriculum and therapy resources to ensure successful implementation of the policies. one of the teachers opined: ‘a catch plan assist. if they did not finish the work, they do it first the following day before the subjects for that day starts.’ (participant 7, teacher, age group 31–40 years) another participant said the following in response to an alternative to providing health services despite the challenges: ‘i am forced to improvise, and work with what i have because at the end of the day i must deliver.’ (participant 13, healthcare worker, age group 31–40 years) recommendation and support required seven ideas for improving support for learners emerged from the analysis. these were: communication and transparency, in-service training, training on policies, correct placement of learners, qualified personnel for special schools, more human resources, and more skills support for the learners. one participant said the following about the support they need from the department of basic education: ‘for the department to provide training regularly, and to hire people that have qualifications on inclusive education for special needs schools.’ (participant 4, teacher, age group 41–50 years) another participant, a teacher, said the following: ‘the department is always supporting us, but we have therapists in the school so in-service training to understand their roles and how they can help us. actually, everyone working in the school, must be developed on how to support the learners.’ (participant 5, teacher, age group 50–60 years) one participant reported that they need support from the department of basic education to help with developing the curriculum at her school: ‘we need to implement a different atp for special schools, not same as the ordinary schools; because we cannot have work similar to mainstream. we cannot rush lessons with our learners.’ (participant 9, teacher, age group 31–40) discussion teachers and healthcare workers found working in sns to be challenging and interesting. they demonstrated an understanding of inclusive education and related policies in sns; however, there were uncertainties around some of the policies and what was expected of them, which could affect the implementation process. ramukumba et al. (2019) highlighted the importance of a policy with clear guidelines and strategies for successful implementation. thus, teachers and healthcare workers’ uncertainties about the policies might have a negative impact on how inclusive policies are implemented and could hinder achievement of target goals. challenges with differentiated curricula, specifically the time factor and difficulties with lesson planning, expand on the findings from other studies (hayes & bulat 2017; hess 2020). in a study conducted by kwatubana and kheswa (2024), limited resources were reported as a challenge to providing health services at school. therefore, findings from this study support the fact that the lack of resources including human resources and assistive devices are indeed a hindrance to providing effective health services at sns. this was worsened by the lack of appropriate training opportunities for the existing limited staff. staff were either qualified as teachers or health workers. while the sns needed personnel who could fill both these niches, further specialised training for both categories of staff was essential but lacking in practice. these results indicated that lack of specialised training in policies made the implementation process challenging. this confirms findings from a study conducted by ntseto et al. (2021) on challenges experienced by teachers in special education, as well as a study by zembe-mkabile (2021). a lack of parental involvement and poor referral channels were also reported as challenges. the same findings were found by a study conducted by ramukumba et al. (2019) in the city of tshwane related to compliance to the ishp, which highlighted a lack of participation from relevant partners such as the department of health and the department of basic education, teachers, healthcare workers, learners, parents, and the community. the ishp stipulates that learners should receive primary health care services in the schools and where such services are not available, mechanisms should be in place to ensure that learners have access to these services. to ensure successful implementation of policies at sns, more training is required on the integration of the skills of healthcare workers, teachers, and parents, as well as improving the school infrastructure. these include better universal design of schools to meet the needs of those scholars who attend sns as well as increasing human and material resources. in spite of the challenges faced by professionals at sns, teachers and healthcare workers have found strategies to surmount these difficulties such as the use of improvising and collaborating with relevant stakeholders. in essence, teachers and healthcare workers act according to their convictions by improvising to meet learner needs leading to successful implementation of inclusive education (hunt 2015). these are employed as a result of the lack of training and resources with regard to how they should implement relevant policies. it is therefore difficult for both teachers and healthcare workers because their challenges are at distinctive and varied levels of the system. the efforts made by teachers and healthcare workers are an indication of complex issues, which require complex solutions. limitations the study acknowledges the limitations that probe for a possible further investigation. this study had 13 participants from the area under study, which is a representative of a minority of the schools’ population. therefore, the results cannot be generalised to a larger population. similar research studies in other areas are therefore required and recommended to enable a clear understanding of the experiences of teachers and healthcare workers in a larger scale. the strength of the study is that the respondents were not limited to specific questions; issues arising from the interviews were explored as they emerged. recommendations this study provides insightful information on issues relating to policy implementation in sns. based on the findings of this study, there is a need for both the department of basic education and department of health to review sns and existing policies as the majority of the respondents felt that policy implementation came short, although they understood what was meant by ‘inclusive education and related policies’. the following can be done when reviewing these policies: assess the current state of sns to determine whether they are still serving the main objective of meeting the unique needs of learners with disabilities. review the current curriculum offered in sns to ensure that the curriculum offered at the schools is aligned with the educational needs of learners. take into consideration issues with policy implementation to inform policy’ review and amendment where applicable. the department should stay up to date with latest research to identify gaps in policy implementation. allocate adequate and effective resources and funds to enable implementation of inclusive education. offer maximum support to basic implementers of the policies. this should be inclusive of compulsory training of teachers and healthcare workers on policies and provision of continuous professional development. integrate the roles of parents, teachers, and healthcare workers to optimise education outcomes for children with special education educational needs by ensuring active participation and training of all stakeholders. conclusion the study revealed the experiences of a selected group of teachers and healthcare workers in implementing policies in sns of ekurhuleni south district, south africa. the results outlined here are intended to better understand issues related to policy implementation experienced by both teachers and healthcare workers. the results of the study showed that working in sns has challenges, including a lack of training opportunities on policies, limited resources, and support, as well as issues with the curriculum and referral system. as the bottom-up theory suggests, progress can be made in realising and implementing inclusive education and related policies in sns; should the experiences of teachers and healthcare workers working in sns in ekurhuleni south district be taken into consideration as the study’s findings highlighted possible factors that affect the implementation process. precisely, this can form the basis for change in the policy-implementation process for achieving inclusive education for all. acknowledgements the authors would like to acknowledge shsph, university of pretoria, national research foundation. our gratitude to charmaine moswathupa, friend, for her support throughout the journey. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions this article was developed by a.p.m. under supervision of c.m.e.m. and co-supervision of l.n. a.p.m. was responsible for protocol development, data collection, data analysis and interpretation, and writing of the article. funding information the authors received no financial support for the research, authorship, and/or publication of this article. data availability data for these findings are available from the corresponding author, a.p.m., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the 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analysis of qualitative health research over a 15-year period’, bmc medical research methodology 18, 1–18. https://doi.org/10.1186/s12874-018-0594-7 walton, e., 2011, ‘getting inclusion right in south africa’, intervention in school and clinic 46, 240–245. https://doi.org/10.1177/1053451210389033 zembe-mkabile, w., 2021, community of practice for social systems strengthening to improve child well-being outcomes. cash plus school-based services, working series paper 2, viewed 21 january 2024, from https://communitiesforchildwellbeing.org/wpcontent/uploads/2021/11/csda-_-cop-_-cash-plus-school-based-services-_-cop-working-paper-series.pdf. article information authors: jermaine m. dambi1 jennifer jelsma2 tecla mlambo1 affiliations: 1department of rehabilitation, university of zimbabwe, zimbabwe 2department of health and rehabilitation sciences, university of cape town, south africa correspondence to: jermaine dambi email: jermainedambi@gmail.com postal address: av 178 avondale harare, zimbabwe dates: received: 28 oct. 2014 accepted: 15 june 2015 published: 13 aug. 2015 how to cite this article: dambi, j.m., jelsma, j. & mlambo, t. 2015, ‘caring for a child with cerebral palsy: the experience of zimbabwean mothers’, african journal of disability 4(1), art. #168, 10 pages. http://dx.doi.org/10.4102/ajod.v4i1.168 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. caring for a child with cerebral palsy: the experience of zimbabwean mothers in this original research... open access • abstract • introduction    • problem statement    • background       • objectives    • contribution to the field • research method and design    • research setting    • study design and participants    • instruments       • the caregiver strain index       • the euroqol 5 dimensions questionnaire       • the gross motor function classification system    • procedure       • ethical considerations    • analyses • results    • demographic characteristics of the sample    • caregiver strain as measured by the caregiver strain index scores    • health-related quality of life (hrqol) of care givers    • factors associated with caregivers’ strain    • psychometric properties of the caregiver strain index (csi) • discussion    • overview    • physical burden    • economic burden    • psychosocial burden    • psychometric properties of the caregiver strain index (csi)    • limitations of the study    • recommendations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: the needs of caregivers of children with disability may not be recognized despite evidence to suggest that they experience increased strain because of their care-giving role. this strain may be exacerbated if they live in under-resourced areas. objectives: we set out to establish the well-being of caregivers of children with cerebral palsy (cp) living in high-density areas of harare, zimbabwe. in addition, we wished to identify factors that might be predictive of caregivers’ well-being. finally, we examined the psychometric properties of the caregiver strain index (csi) within the context of the study. method: caregivers of 46 children with cp were assessed twice, at baseline, and after three months, for perceived burden of care and health-related quality of life (hrqol) using csi and eq-5d respectively. the psychometric properties of the csi were assessed post hoc. results: the caregivers reported considerable caregiver burden with half of the caregivers reporting csi scores in the ‘clinical distress’ range. many of the caregivers experienced some form of pain, depression and expressed that they were overwhelmed by the care-giving role. no variable was found to be associated with clinical distress. the csi demonstrated good overall internal consistency (cronbach's alpha = 0.8), stability over time (z = 0.87, p = 0.381) and was significantly and negatively correlated with the eq-5d vas (spearman's rho = −0.33, p = 0.027), demonstrating concurrent validity. conclusion: caregivers must be monitored routinely for their level of distress and there is an urgent need to provide them with support. the csi is likely to be a valid measure of distress in this population. introduction top ↑ problem statement cerebral palsy (cp) is the most common physically disabling paediatric condition globally (gagliardi et al. 2008). the prevalence in zimbabwe is estimated to be at 1.55 per 1000 in rural areas and 3.3 per 1000 in urban areas (finkenflugel et al. 1996). it is characterised by multiple impairments and functional limitations; essentially, it is a group of disorders that affects the development of movement and posture (aisen et al. 2011). in harare, the capital city of zimbabwe, there are very few opportunities to place young children in appropriate day-care facilities, particularly those with severe disabilities from families with limited financial resources. rehabilitation is provided on an intermittent basis by state institutions but caregivers, mostly mothers and sometimes members of the extended family do the day-to-day care. even in contexts in which there may be more supportive care available, caring for a child with physical disabilities may have a negative impact on the health and well-being of caregivers (moster et al. 2010; raina et al. 2005). cp is associated with multiple impairments and consequently, it is associated with multiple activity limitations and participation restrictions (deepthi & krishnamurthy 2011; martin et al. 2005; moster et al. 2010; sharan et al. 2012). although the child with a disability may be a source of joy to the parents, their special needs may add to the emotional, physical and financial strain inherent in raising children, particularly in under-resourced settings. in addition, there is a consensus that long-term care-giving may affect physical, social and emotional health of the caregivers, their well-being, marital relationships, and employment and financial status (davis et al. 2009; yilmaz, erkin & ezke 2013). these added concerns may lead to subsequent deterioration of health and health-related quality of life of the caregivers (hrqol) (berker & yalçin 2008; deepthi & krishnamurthy 2011; jones et al. 2007; martin et al. 2005; oh & lee 2009; o’ shea 2008; rodrigues dos santos et al. 2009). it is obviously also in the best interest of the child that strain in their caregivers be recognized and appropriate support given. caregiver strain is defined as ‘strain or load borne by a person who cares for a family member with a disability’ (oh & lee 2009). background although there have been several studies on the strain experienced by caregivers of children with cp (davis et al. 2009; palamaro munsell et al. 2012), little is known regarding the situation of mothers and other caregivers within a situation of extreme resource limitation, such as exists within the high-density (township) areas of harare. in general, there is little information on the hrqol of caregivers of children with cp in low income countries as most of the available information originates in high-income countries. in addition, hrqol is context-specific and culturally dependent (bakas et al. 2012; cieza & stucki 2005). we did not know what the level of strain on caregivers of children with cp was and we do not know what factors exacerbate the strain. we identified likely contributors to increased strain as those being related to the condition of the child and those related to the caregiver. we hypothesised that strain would be increased if the physical demands of caring were increased. in other words, caring for older children and more disabled children might result in greater strain. further, although cp is a non-progressive condition, the impact of the functional limitations becomes more apparent as the child ages. as the child increases in body size and weight, the need for greater and more complex mobility increases, making functional impairment more apparent and severe. further, the clinical manifestations of cp evolve with time and impairments such as spasticity may increase and lead to more severe functional limitations (karande, patil & kulkarni 2008; martin et al. 2005). depending on the level of severity and type of cp, some children may be dependent on caregivers with assistance in activities of daily living (adls) (murphy et al. 2007; sawyer et al. 2011; tadema, vlaskamp & needs 2009). this may well take a physical toll on the caregivers as the child becomes older and heavier. in addition, cp is a lifetime condition; it therefore requires a lifetime commitment from the caregiver (berker & yalçin 2008; jones et al. 2007), particularly when there are no respite facilities available. in addition, a poor health-related quality of life might also be associated with greater strain in caregivers. this would be consistent with literature which states that care-giving can lead to physical strain that negatively affects the caregivers’ physical hrqol (brehaut et al. 2004; eker & tüzün 2004; jelsma et al. 2001; navaie-waliser et al. 2002). those who report problems with their own mobility or who are experiencing pain or anxiety and/or depression might also report more strain on the csi. older caregivers might be likely to experience more difficulty in physically caring for the child. in zimbabwe, the impact of hiv might result in grandparents or other relatives taking responsibility for caring for the child if the biological mother is ill or has passed away. it is unclear whether the relationship of the child to the caregiver would either increase or decrease strain. finally, we wished to explore the impact of socioeconomic and demographic conditions on reported strain. studies consistently report that care-giving can result in an increased financial burden (brehaut et al. 2004; centre 2010; davis et al. 2009; murphy et al. 2007; navaie-waliser et al. 2002; o’ shea 2008; raina et al. 2004; rodrigues dos santos et al. 2009). we expected that those who were experiencing financial hardship and were unemployed were more likely to report higher levels of strain. in order to ensure the internal validity of the study, it was necessary to validate the caregiver strain index (csi) as it has not been used within the zimbabwean context before to the best of our knowledge. the csi is a generic tool for assessing the burden of caregiving on the well-being of informal caregivers (sullivan 2002). a review of the literature revealed that there are more than 74 tools measuring the burden of care, and these tools have been used in different settings (whalen & buchholz 2009). of these, the csi was deemed an appropriate tool as it captures the multidimensionality of the burden of care, has demonstrated sound psychometric properties, it is short and easy to administer, and has been used previously in caregivers of children with cp (narekuli, raja & kumaran 2011; robinson 1983; sullivan 2002). objectives the objectives of the study were therefore to establish what proportion of caregivers of children with cerebral palsy (cp) living in high-density areas of harare, zimbabwe, reported excessive strain. in addition, we wished to identify factors, such as severity of the functional limitation of the child, age of child or caregiver and demographic variables that might be predictive of their strain levels. finally, we wished to examine the psychometric properties of the caregiver strain index (csi) within the context of the study. contribution to the field the study aimed to provide information related to the caregivers of children with cp in a very under-resourced area. the context is different to those in the published literature as there are few public support systems in place and the caregivers are likely to bear the burden and benefits of caring for a child with disabilities with little assistance. through identifying the degree of caregiver strain and exploring which factors are related to this strain, rehabilitation workers and others may be able to use the scarce resources available to assist those caregivers who are most likely to need support by providing them with targeted support. research method and design top ↑ research setting the study participants were recruited from two of the central hospitals in harare, zimbabwe. one of the centres, chitungwiza central hospital (cch), is located in chitungwiza, a satellite town located 30 kilometres away from harare. children with cp receive physiotherapy services as outpatients at this centre. the other participants were recruited from harare central hospital (hch). hch is one of the largest referral centres in zimbabwe and children with cp receive services from children's rehabilitation unit (cru), both as outpatients or under the outreach programme. the cru conducts outreach services in 14 high-density suburbs in harare periurban area. respondents from the hch were recruited from the mabvuku outreach point. mabvuku is a high-density suburb of harare that is located 17 kilometres east of the city centre. the children and caregivers (mostly mothers) in the outreach group (or) gathered twice a month at a community centre. the respondents from cch formed the hospital-based group and were recruited during their outpatient appointments. the frequency of appointments for this group was variable and dependent on the discretion of the treating therapists. in both arms, children received individual face-to-face treatment from therapists. in addition, the or arm received group activities, where caregivers were requested to demonstrate home exercise programmes to other caregivers as well as sharing the challenges and achievements of caregiving. study design and participants a descriptive and analytical longitudinal design was used. a sample of convenience was drawn from the children treated at cch's outpatients department and mabvuku outreach point. we recruited 46 informal (unpaid) caregivers of children with cp with 20 being recruited from the or group and 26 from the ib group. they were the primary caregivers, that is, those who were responsible for the daily care of the children. the children had to have a diagnosis of cp according to their doctors’ notes. only children up to 12 years of age were recruited as the discharge age for the cru outreach programme is 12 years. further, children who had comorbidities (such as spinal bifida) were excluded. assuming mean csi scores of seven and nine (sd = 2) between the two groups (narekuli et al. 2011), the expected minimal number of cases was 32 to detect a significant change with 80% power over time. instruments the socio-demographical details were captured through a researcher designed demographics questionnaire. the clinical details for children with cp were extracted from the patient notes. in addition, two instruments were used to assess the impact of caring for a child with cp. these were the csi that measures caregiver burden of care and the eq-5d that assesses hrqol of the caregiver. in addition, the gross motor function classification system (gmfcs) was used to assess the severity of the child's condition. as the level of literacy and english proficiency is high in harare, the csi was not translated into the vernacular, shona. the caregiver strain index the caregiver strain index (csi) is a validated and reliable tool (alpha = 0.86) for measuring the multidimensionality of burden of care-giving (chen & hu 2002). the respondents are required to respond with a ‘yes’ or a ‘no’ over 13 statements. statements such as ‘it is a physical strain’, ‘there have been family adjustments’ and ‘it is a financial strain’ exemplify items that assess the physical, psychosocial and economic domains of the burden of care respectively (chen & hu 2002; robinson 1983). a ‘yes’ is given a score of one, and a ‘no’ is given a score of zero. summation of ‘yes’ responses give the total score that ranges from 0 to 13. a score of seven or more signifies a high level of stress (robinson 1983). although originally developed to measure the burden of caregiving the elderly with chronic illness (robinson 1983), the csi has been used in evaluating the impact of caregiving adults with stroke (bugge, alexander & hagen 1999; post et al. 2007), cancer (chen & hu 2002), multiple sclerosis (khan, pallant & brand 2007), amongst others. it had not been previously validated in the zimbabwean population. the euroqol 5 dimensions questionnaire the euroqol 5 dimensions questionnaire (eq-5d) is a generic, standardised and validated tool to assess hrqol in adults (cheung et al. 2011). in the first section of the tool, respondents rate their own health in five domains on a three-point likert scale. the domains include mobility, self-care, usual activities, pain or discomfort and anxiety or depression. respondents can rate if they have ‘no problem’, a ‘moderate problem’ or an ‘extreme problem’, and they are rated as one, two or three respectively (cheung et al. 2011). utility scores are then used to transform the five-digit number obtained from scoring the five dimensions into a discrete figure (cheung et al. 2011). utility scores for the zimbabwean population are available (jelsma et al. 2001). the second section of the tool is the eq-5d visual analogue scale; respondents rate their health by marking on a linear scale which ranges from 0–100. the tool has been translated into several languages including shona, a zimbabwean native language. the shona version of the eq-5d has demonstrated good psychometric properties, that is, it is valid and has high test-retest reliability in measuring hrqol in the zimbabwean adult population (jelsma et al. 2001). the gross motor function classification system functional prognosis of cp is dependent on level of severity and this we measured using the gross motor function classification system (gmfcs), which is a valid and reliable tool (debuse & brace 2011; gorter et al. 2004). this classifies severity on a five-level ordinal scale , with children in level one being least affected and level five being more severely affected and functionally dependent (gorter et al. 2004). procedure ethical considerations ethical approval was granted by the university of cape town (ref. 109/2012) and the medical research council of zimbabwe (mrcz/b/333). informed written consent was sought from the caregivers and rehabilitation professionals. verbal assent was requested from children who could communicate (n = 5). caregivers were assigned identity numbers to preserve confidentiality and only the principal researcher had access to the collected raw data, which was kept in a safe locker. the research team recruited caregivers over four consecutive weeks. caregivers were approached as they were awaiting services or after their children were treated. once informed consent had been obtained, csi and eq-5d questionnaires were distributed to caregivers and were self-administered. the principal researcher then assessed and documented the severity of children with cp using the gmfcs. the participants were provided with snacks and drinks after data collection procedures. analyses descriptive statistics were used to describe the sample demographics as well as the frequencies of reported problems on the eq-5d and csi. the chi-squared and sign tests were used to compare the differences in range of csi scores, the most reported problems on the csi and health profiles of caregivers on the domains of the eq-5d over the three months of the study. the t-test was used to compare eq-5d utility and vas scores at baseline and after three months. results top ↑ demographic characteristics of the sample table 1 shows the general demographic characteristics of the sample. table 1: study population demographic characteristics (n = 46). the mean age of the children was 26 (sd = 36) months with males constituting the majority (n = 25, 54%). spastic cp was the predominant subtype (n = 37, 80.4%). each level of gmfcs ability was represented with approximately one third in the least (28%) and one third in the most severely affected levels (35%). the caregivers were predominantly mothers (n = 38, 82.6%) and their mean age was 30.4 (sd = 9.2) years. most of the caregivers had secondary education (84.8%) and were unemployed (60.9%). caregiver strain as measured by the caregiver strain index scores more than half of the caregivers reported experiencing inconvenience, physical strain, confinement, family adjustments, disrupted personal plans, work adjustments, financial strain and being overwhelmed at baseline. the proportions remained greater than 50% at three months except for family adjustments and confinement, which decreased to below 50% (table 2). at both times, the greatest number reported problems with financial strain and feeling overwhelmed. there were no significant differences in the proportions of positive responses to any category over the three months of the study. table 2: proportion of caregivers reporting caregiver strain (n = 46). further, the majority of caregivers experienced a high burden of care (table 2) as 50% (n = 23) of the caregivers had scores greater than or equal to seven which is the cut-off point for caregiver stress (or strain). the sign test indicated that there were no statistically significant changes in csi scores over three months (p = 1.0). there were also no significant differences in the median scores between the two groups or in the proportion reporting clinical distress (score greater than seven) either at baseline (p = 0.385) or three months (p = 0.221), although two caregivers had developed clinical distress during this time. health-related quality of life (hrqol) of care givers most of the caregivers reported that they had no problems with mobility, self-care, and usual activities, whereas many reported some or pain or discomfort and anxiety or depression, with the passage of time (table 3). table 3: comparison of eq-5d results from the present study and the eq-5d shona version validation study. factors associated with caregivers’ strain our findings (see table 4) revealed that there was no association between clinical stress and the following variables: the child's age the severity of cp caregivers’ age caregivers’ relationship with child caregivers’ educational status. table 4: relationship between caregivers who were strained and age of children, severity of cerebral palsy (cp), caregivers’ age, caregiver relational status, caregivers’ educational and employment status. the only association that approached significance was between clinical stress and unemployment in that there were fewer respondents with clinical stress in the unemployed group (χ2 = 3.285, α, df = 1, p = 0.007) (table 5). table 5: association between caregiver distress and employment status (n = 46). psychometric properties of the caregiver strain index (csi) the internal consistency of the caregiver strain index (csi) was cronbach's alpha 0.80 and the only item that resulted in a decrease of alpha was ‘upsetting’ as the removal of this item increased alpha to 0.818. it can be concluded that the csi yields internally consistent results. as shown in figure 1 below, the visual analogue scale (vas) and the csi were significantly and negatively correlated (spearman's rho = −0.33, p = 0.027). figure 1: scatterplot of care-giver strain index (csi) and visual analogue scale (vas) scores. the csi demonstrated concurrent validity; as illustrated in table 6, the difference in vas score approached significance and the correlation between vas and csi score was negative and significant (spearman's rho = −0.33, p = 0.027; see figure 1). table 6: the association between visual analogue scale (vas) and the eq-5d utility index scores of those who were clinically stressed (n = 23) and those who were not (n = 23). discussion top ↑ overview it is clear that the caregivers in our study experienced a great deal of stress with half of the respondents reporting clinical stress. this is not surprising given the difficult socioeconomic circumstances of those living in high-density areas in harare. however, we did expect to find associations between the csi and the age of the child, the age of the caregiver and/or the level of severity of the functional limitations and this was not the case. other unmeasured variables such as the perceived availability of social support or financial resources might be better predictors of caregiver burden. further, the small sample size could have limited the statistical power of the analyses. caregivers in harare reported considerable strain and poor hrqol most probably due to care-giving and this is similar to findings from other studies which report that caring for a child with cp can be stressful (murphy et al. 2007; oh & lee 2009; raina et al. 2004; sawyer et al. 2011; tadema et al. 2009). furthermore, as noted previously (murphy et al. 2007; oh & lee 2009; reid, moss & hyman 2005), the burden was multifactorial. discussion of the results is categorised into physical, economic and psychosocial burden and psychometric properties of the csi. physical burden most of the caregivers reported physical strain on the csi and pain or discomfort on the eq-5d. the physical strain or pain may be accounted for by the need for assistance in adls due to activity limitations children with cp face (murphy et al. 2007). lifting and carrying children might result in pain (davis et al. 2009). although not statistically significant, there was a slight increase in the proportion of caregivers reporting of pain thus our findings are suggestive that the intensity of pain may increase with the passage of time. further, results from a meta-analysis comparing results from the present study and those of the validation of the shona version of the eq-5d revealed that , compared to the general population, caregivers of children with cp are more likely to report pain (χ2 = 9.968, df = 1, p = 0.002). in addition, in the zimbabwe situation, there is no adapted transport for the children with disabilities (cwds) and wheelchairs are not readily available, even for older children. mothers generally have to carry their children and the traditional method of carrying on the back utilized by the caregivers might give rise to increasing back pain. a weakness of the study was that information on assistive devices was not gathered and these hypotheses need to be tested in further studies. as our sample consisted of relatively younger caregivers, the prevalence of problems with mobility, self-care and usual activities was low. further, there were no statistically significant differences in the reported problems over the three-month period. we compared the results from the present and that of the validation of the shona version of the eq-5d (jelsma et al. 2001). their sample consisted of 42 residents of a high-density suburb in harare with a mean age of 34.3 (sd = 11.3) years. the study setting was the same as our study and the two groups were comparable in terms of age, educational attainment and employment status (jelsma et al. 2001). compared to the general population, caregivers of children with cp are more likely to report mobility problems (χ2 = 10.192, df = 1, p = 0.001) and self-care problems (χ2 = 10.889, df = 1, p = 0.002). this indicates that caring for a child with cp or physical disability may lead to an increased physical burden on primary, informal caregivers. economic burden although no comparison was made with the financial situation of parents of typically developing children (which was a weakness of the study), three quarters of respondents reported an increased financial burden. care-giving leads to compromised working opportunities due to the conflicting demands of care-giving and employment thus ultimately resulting in limited opportunities to enter gainful employment (brehaut et al. 2004; davis et al. 2009; navaie-waliser et al. 2002; raina et al. 2004). likewise, in a cross sectional study on 91 bangladeshi caregivers, a country with similar developmental challenges, and mothers of children with cp between the age of 1.5 and 5 years concluded that care-giving results in an added economic burden. the authors recommended that economic empowerment of caregivers in the form of microcredit programmes may lead to reduced financial burden. they postulated that provision of low cost aids would also help to alleviate physical and financial burden in caregivers (mobarak et al. 2000). this could also be useful in the zimbabwean context, particularly in the light of the physical strain discussed above. as cp is more prevalent in people of lower ses (ogunlesi et al. 2008), caregivers are likely to have lower educational attainment, have diminished opportunities of finding employment and subsequently are at high risk of financial strain (mu’ ala, rabati & shwani 2008). this is true across different contexts. a canadian study comparing health outcomes of 468 caregivers of children with cp with the general population revealed that caregivers had a lower academic attainment, more limited work opportunities and were more likely to be unemployed and subsequently had lower income levels (brehaut et al. 2004). the mean age of their participants was 40.3 (sd = 6.7) years and age range was between 23 and 63 years, which was comparable to our sample. the increase in financial burden with the passage of time can be accounted for by the recurrent usage of medical services (davis et al. 2009) which adds to the costs of raising a child with a disability. as cp is associated with diverse impairments (aisen et al. 2011; becher 2002), children with cp often require routine medical attention (davis et al. 2009) and this may overburden limited financial budgets, particularly in those who are drawn from lower ses groups. surprisingly, however, our findings suggest that unemployed caregivers were less likely to have clinical stress. this seems to contradict findings from literature, which stipulates that unemployed caregivers are likely to report financial burden and this may contribute towards distress or depression (mu’ ala et al. 2008; ogunlesi et al. 2008). it may be that caregivers who are employed have difficulty in juggling work and home responsibilities, particularly with the lack of care facilities in the high-density areas. on the other hand, caregivers may have more contact time with their children and this may lead to increase in the bonding between caregiver and child, subsequently leading to care-giving being regarded more as a blessing as opposed to being a burden. this is speculation and more studies utilizing qualitative methodologies are needed to explore this hypothesis. psychosocial burden long-term care-giving has been shown to predispose caregivers to strain, stress, anxiety, depression and distress, which is of chronic duration relative to the rest of the population (brehaut et al. 2004, 2009; cheshire, barlow & powell 2010; davis et al. 2009; navaie-waliser et al. 2002; sawyer et al. 2011). our findings corroborate the sentiments as most caregivers complained of psychosocial problems as measured by the csi and reported anxiety or depression on the eq-5d. for instance, over 78% of caregivers reported at least some problems with anxiety or depression whereas only 50% of participants in jelsma et al.’ s (2001) validation of the shona version of the eq-5d study did so. further, participants in the present study were more likely to report anxiety and/or depression (χ2 =15.171, df = 1, p < 0.001) compared to the general population. it therefore seems reasonable to attribute the increased anxiety or depression to be secondary to the burden of care giving. an irish study on 161 caregivers of children with cp revealed that, female caregivers exhibited lower hrqol scores as measured by the sf-36 and more so in the mental health component (parkes et al. 2009). however, the magnitude of anxiety or depression resulting from caring for a child with cp is difficult to quantify because of methodological flaws in designs of the studies, which have explored the matter. for instance, cheshire et al. (2010) compared the hrqol of caregivers of children with cp and other comorbid conditions (46% of the sample) and came to the conclusion that caring for a child with cp leads to anxiety or depression, yet the comorbid conditions can be confounding to caregiver's hrqol. our results support the literature, which states that caregivers occasionally experience sleep problems (byrne et al. 2010; murphy et al. 2007). children with cp suffer from a wide range of impairments and these may account for abnormal sleep patterns; for instance, pain is prevalent in children with cp and this can lead to the child displaying altered sleep patterns (hadden & von baeyer 2002; murphy et al. 2007) which would affect the care-giver, particularly in small homes in which the majority of residents of the two suburbs live. furthermore, most of the children suffer from communication problems; therefore, ‘excessive crying’ may be the only viable way of communication and may result in altered sleep for caregivers (hadden & von baeyer 2002). the altered sleep problems may also be an expression of behavioural problems in the children with cp (ketelaar et al. 2008). the problem of disrupted sleep needs to be addressed as it may result in further stress in caregivers and physical fatigue, which perpetuates a vicious cycle. this underscores the need to screen and treat pain in children with cp (hadden & von baeyer 2002). care giving can also result in changes in personal plans and this could influence the social life of caregivers as well as their social connections (sawyer et al. 2011; sipal et al. 2010; skok, harvey & reddihough 2006). as many of the participants reported changes in personal plans and that care giving is confining and inconvenient, it is reasonable to infer that caring for a child with cp alters social life and connections as most of the time is spend fulfilling the care giving role. care giving can be emotionally draining for caregivers (cheshire et al. 2010; makizako et al. 2009; murphy et al. 2007; parkes et al. 2009) with behavioural problems being the strongest predictor of maternal stress (ketelaar et al. 2008; mobarak et al. 2000; parkes et al. 2009; sipal et al. 2010). caregivers are more likely to suffer from emotional and cognitive problems, as well as chronic illnesses (brehaut et al. 2004). in our context, emotional problems can stem from the stigmatisation and discrimination related to disability (myezwa & m’ kumbuzi 2003). cultural beliefs as to the cause of the disability may contribute towards this stigmatisation and consequently social isolation and emotional problems in caregivers (hamzat & mordi 2007; myezwa & m’ kumbuzi 2003). cp can be viewed as a curse from ancestral spirits for wrongdoings such as promiscuity during pregnancy (hamzat & mordi 2007). further, stigmatisation in its worst form, may lead to the locking up of children with cp in homes thus denying them access to medical treatment (hamzat & mordi 2007; myezwa & m’ kumbuzi 2003). as reported in literature, caring for a child with cp can be overwhelming as it can negatively affect caregivers physically, emotionally and psychosocially (murphy et al. 2007; oh & lee 2009; palamaro munsell et al. 2012; reid et al. 2005). the increase in the proportion of caregivers who felt overwhelmed can be accounted for by the fact that care-giving demands increase with time. furthermore, the burden is cumulative and chronicity of care has been shown to lead to further deterioration of caregivers’ hrqol. psychometric properties of the caregiver strain index (csi) we assessed the internal consistency, test-retest reliability and the concurrent validity of the csi. the csi demonstrated good overall internal consistency (cronbach's alpha = 0.8), the eq-5d visual analogue scale of health status and the csi were significantly and negatively correlated (spearman's rho = −0.33, p = 0.027), thus demonstrating concurrent validity. in addition, the scores on the csi remained stable over three months for each item and overall (z = 0.87, p = 0.381). therefore, the csi and eq-5d may be used to routinely screen for perceived burden of care and hrqol of caregivers of children with cp. limitations of the study as this was a descriptive and analytical longitudinal study and we applied convenience sampling, confounders to burden of care and hrqol of caregivers cannot be accounted for. in future, comparison of the hrqol and burden of care of caregivers of typically developing children, evaluation of the number and age of additional children, apart from the child with cp, in the care-givers’ care and an assessment of care-givers perceived social support will give a clearer picture of the impact of caring for a child with cp. recommendations the following recommendations have been made: there is a need for routine hrqol and perceived burden of care assessment in caregivers. there is a need for provision of interventions, including the provision of assistive devices, such as wheelchairs to caregivers of children with cp. there is a need for the government to provide financial assistance to caregivers of children with cp. there is also a need for identification and implementation of models of care, which improve the hrqol of caregivers in addition to provision of care to children with cp. conclusion top ↑ findings from our study revealed that caregivers of children with cp in harare, zimbabwe, exhibited poor hrqol with half of the participating caregivers experiencing high levels of stress. most of the caregivers complained of pain or discomfort, anxiety or depression, economic burden and being overwhelmed by the care-giving role. there is need for surveillance of clinical distress in caregivers of children with cp. therefore, it is essential to provide these caregivers with continual support through interventions, which may help to improve hrqol and assist caregivers to deal with the different stressors attendant on caring for a child with cp. acknowledgements top ↑ the authors are grateful to the university of zimbabwe for the funding, which allowed the study to take place. appreciation is expressed to the caregivers and children with cp who participated in this study. we applaud your commitment and cooperation throughout the duration of this study. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions both j.m.d. 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a.a., 2013, ‘quality of life in mothers of children with cerebral palsy’, neurorehabilitation & neural repair 19, 232–237. http://dx.doi.org/10.1155/2013/914738 abstract introduction research question research design and methods findings discussion clinical and research implications limitations conclusion acknowledgements references about the author(s) grace r. malapela department of health studies, college of human sciences, university of south africa, pretoria, south africa gloria thupayagale-tshweneagae department of health studies, college of human sciences, university of south africa, pretoria, south africa olabisi f. ibitoye department of health studies, college of human sciences, university of south africa, pretoria, south africa citation malapela, g.r., thupayagale-tshweneagae, g. & ibitoye, o.f., 2020. ‘nurses’ perceived role in healthcare transition of adolescents with intellectual disabilities’, african journal of disability 9(0), a674. https://doi.org/10.4102/ajod.v9i0.674 original research nurses’ perceived role in healthcare transition of adolescents with intellectual disabilities grace r. malapela, gloria thupayagale-tshweneagae, olabisi f. ibitoye received: 15 aug. 2019; accepted: 25 may 2020; published: 14 dec. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: nurses’ role in the transition of adolescents living with intellectual disabilities (ids) has always been neglected. the primary role of nurses is to promote health, provide nursing care, alleviate suffering and rehabilitate. improving the quality of life for individuals with id when they undergo the healthcare transition process from adolescence to adulthood was previously not considered a priority. objectives: to investigate the nurses’ perceived role in healthcare transition of adolescents with id into adulthood. method: a qualitative descriptive design using semi-structured interviews with 18 nurse participants was used. the sample included 25 nurses working in care and rehabilitation centres and non-governmental organisations in tshwane district, gauteng province, south africa. results: three main themes that emerged from the analysis were support systems, advocacy and health promotion. conclusion: the findings of this study clearly show the need for a strong healthcare support system to facilitate a successful transition process of adolescents with id. the study findings support the view that nurses can play a key role in assisting individuals with id and their families in dealing with the challenges of healthcare transitioning into adulthood. keywords: adolescents; adulthood; intellectual disabilities; nurses; role; transition. introduction nurses’ role in the transition of adolescents living with intellectual disabilities (ids) has always been neglected (betz 2003). the primary role of nurses is to promote health, provide nursing care, alleviate suffering and rehabilitate. nurses should provide supervision, direction and support in the management of adolescents with id, with the aim of optimising the life and health of individuals and their families. improving the quality of life for individuals with id when they undergo the healthcare transition process from adolescence to adulthood was previously not provided or considered a priority. transition into adulthood is universally challenging for most adolescents. adolescents with id face more difficulties than those without id owing to their cognitive and behavioural limitations (ally et al. 2018). transition is multifaceted. transition includes progression from school to commencement of work life, social and community participation and independent living from the family (cobb & alwell 2009). an individual with disability also needs healthcare transition services from paediatric to adult healthcare settings (betz, nehring & lobo 2015). the purpose of the current study is to provide insights into nurses’ perceptions of their role in healthcare transition of adolescents with id. several studies have documented poor preparation and coordination of services for young adults with special need for the transition process to adulthood (doug et al. 2011; rutishauser, akré & surìs 2011). this lack of proper planning and support hinders them from achieving an expected level of independence (lotstein et al. 2005). successful transition for people with id requires partnership and collaborative efforts of a wide range of professionals, agencies, centres or services. previous studies on transition for people with id mainly focused on independent living, employment, interpersonal and intimate relationships, whilst only few studies were conducted on healthcare transition (betz et al. 2015). according to blum et al. (1993), healthcare transition is the: [p]urposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound, and comprehensive. (p. 570) it facilitates the transfer of care from paediatric to adult healthcare and supports the acquisition of developmental needs. the american academy of pediatrics, american academy of family physicians and american society of internal medicine define healthcare transition as (american academy of pediatrics, american academy of family physicians & american college of physicians-american society of internal medicine 2002): [a] dynamic, lifelong process that seeks to meet their individual needs as they move from childhood to adulthood. the goal is to maximise lifelong functioning and potential through the provision of high quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. it is client-centred, and its cornerstones are flexibility, responsiveness, continuity, comprehensiveness, and coordination. (p. 1304) healthcare transition planning is the responsibility of the care providers such as the primary care physicians, nurse practitioners and physician assistants as well as medical subspecialists, but performing these roles can also be a complex process as the activities involved during this period go far beyond the routine care for simple chronic disease (okumura, saunders & rehm 2015). there is evidence that nurses were not actively involved in the process (betz et al. 2015). this lack of involvement and participation has been attributed to the poor definition of the scope of nursing practice roles and responsibilities in healthcare transition. al-yateem and docherty (2015) asserted that transition is regarded as a concept of significance to nursing and healthcare professionals. nurses should be active participants in all stages of transition for adolescents with id. however, studies have also suggested unwillingness of some adult-focused healthcare providers in caring for children with chronic disability conditions, whilst a lack of resources for the care providers to prepare youth for transition was also reported (okumura et al. 2008; sharma et al. 2014). evidence-based approaches to provide healthcare transition services remain obscure for nurses, especially in south africa. this necessitates the need to investigate the nurses’ perceived role in the transition of adolescents with id. research question this study aims at answering the following question: what are the nurses’ perceived roles in healthcare transition of adolescents with id? research design and methods sandelowski’s (2010) descriptive qualitative design was adopted for this study. the researchers’ aim was to explore what the nurses perceive as their role in the healthcare transition of adolescents with id. participants the study population included 18 nurses working in non-governmental organisations (ngos) and care and rehabilitation centre in tshwane district, gauteng province, south africa. all the nurses were registered with the south african nursing council (sanc) which is a statutory body. eight participants had a diploma in nursing (general, psychiatric community) and midwifery (r.425), five participants had a diploma in psychiatric nursing (r 880) and five participants had a diploma in general nursing (r.683). the sample was selected through purposive sampling method. nurses above 21 years of age who were directly involved in the care, treatment and rehabilitation irrespective of race and gender were included in this study. nurses younger than 21 years were excluded from the study. data collection a total of 18 individual semi-structured interviews were conducted between december 2016 and september 2017. participants signed a consent form before the commencement of interviews. the majority of interviews were conducted at the participants’ places of work, except for three participants who opted to be interviewed at a venue agreed upon between the first author and them. the interview guide was developed by the authors and was used to solicit information on the participants’ perceived role in healthcare transition of adolescents with id. each interview started with a broad statement: ‘tell me your role as a nurse in the healthcare transition of adolescents living with intellectual disabilities into adulthood’. this statement was followed by probes in the form of questions or statements depending on the answer. such probes include the following: ‘is this how you view your role?’ and ‘what do you think should be done to ensure clarity of your role in the transition of adolescents with intellectual disability?’ procedure recruitment of participants took 3 months because of delays in response by other institutions. permission letter, ethical clearance certificate, information leaflet and consent forms were sent via email to the institutions for approval to conduct the study. after approval and consent were granted, interviews were conducted at the convenient time during breaks and rest days in order to gain cooperation from the participants. in each of the three centres, an office with enough lighting and space was allocated for the study. the office was usually located at one corner of the centre away from movements to avoid distractions. the interviews lasted for 30–45 min depending on the participants’ response. data saturation was reached on the 11th participant. however, the interviews continued until participant 18. data analysis sandelowski’s (2010) approach to data analysis was used in this study. in accordance with the approach, data analysis started at the same time with data collection. the transcripts were read several times by the first and second authors to get an in-depth understanding of the participants’ views. interviews were systematically coded using sandelowski’s (2010) approach in order to explore emergent themes on the perceptions of nurses regarding their role in the transition of adolescents with id. five of the transcripts were given to an independent coder for accuracy checking, and there were only minor differences in the wording. all the differences were discussed and consensus was reached. three themes emerged from the analysis. ethical consideration the higher degrees committee at the department of health studies, university of south africa (unisa), approved the study protocol (reference number: hshdc/540/2016). the gauteng department of health also granted permission (reference number: gp_2017rp23_259). furthermore, permission was also obtained from all the three institutions where the study was conducted. more importantly, participants signed an informed consent form before data collection. findings demographic profile participants were registered professional nurses, with their ages ranging from 29 to 59 years. most of them were female participants and married (n = 13) and only one was a male participant with children. fourteen participants were working in government care and rehabilitation centre, and only four out of 18 participants were working in ngos. after rigorous analysis of the interview transcripts, three major themes emerged, namely, support systems, advocacy role and health promotion. support systems the first major theme from this study was the role of nurses as a ‘support system’ for individuals with id and their families. nurses are an integral part of the health team and the first contact point in most care rendering services. in addition, nurses need to play a major role in planning for transition process and ensure that they provide support to the families, relatives and individuals with id during this journey. the support services identified here include physical, information, social and psychological support. the understanding of this important role was apparent in the following extracts: ‘as nurses we should ensure that we are there for the patients to ensure better health and positive outcomes for all irrespective of colour, race and disability.’ (female, 34 years old) ‘in most cases, families lack information on how to access some of the service systems and other health care systems where they can be helped. nurses need to know the available facilities and services in the communities so that families, relatives and individuals with intellectual disabilities might benefit. services like social, education, transport, psychological, occupational, spiritual, non-governmental organisations and private enterprise might assist in reducing some of the services.’ (female, 50 years old) ‘it is the duty of the nurse to ensure that individuals with intellectual disabilities are physically, socially, psychologically and spiritually healthy to be able to comply with the transition process. this also will promote the health and well-being of the individuals and their families.’ (female, 29 years old) performing the supporting role was expressed to be difficult sometimes, especially in facilities with less human resources: ‘with more workload and staff shortage, less time is spent with the individuals and families. as a result we miss a lot and as a result patients tend to regress rather than progress.’ (male, 40 years old) advocacy role the need for nurses to step into advocacy role for the adolescents with id was emphasised as this group has less power to fight for themselves and sometimes the family might feel overwhelmed: ‘parents are often confused and uncertain about what the future holds for their children. … failure of nurses to advocate for clients’ rights makes them more prone to abuse, stigma and discrimination.’ (female, 30 years old) ‘nurses have the role to advocate for the patients and to act in the best interest of the patients so that they achieve quality of life.’ (male, 40 years old) the nurses ensure that this group of people have access to other service systems with constraints as most facilities are ill-equipped to render some required services: ‘the challenge is that we are far from everything. our institution does not have a learning centre where these individuals can learn most of the working skills and be able to earn a living and be employable.’ (female, 45 years old) ‘what we do is just to provide basic care and ensure that their basic needs are met. no preparations towards the future. although others are profoundly disabled, others can benefit. this will bring about positive change and outcomes into their lives. as a result, they will be able to contribute to the community and be valuable members in the community that bring about change.’ (female, 39 years old) health promotion nurses in the study highlighted the lack of awareness about the transition process as a barrier to proper transition. to this end, the participants conveyed the need for an interdisciplinary approach to strengthen and promote more awareness for individual, family and community about transition process and the support services available: ‘lack of awareness is one of the barriers to the transition process. more platforms at community level should be initiated so that communities can [come] up with new ways to support these individuals and their families. transition process should be regarded as a societal issue rather than being a family or health issue.’ (female, 42 years old) ‘these people can contribute something positive to the community. but they just have to sit at home, do nothing and expect nothing in return.’ ‘without training and counselling, transition process and its challenges will not be reduced. parents tend to be reluctant as far as transition process is concerned. service systems that cater for individuals with intellectual disabilities are limited. better services are available in private sectors, but expensive. therefore, affordability becomes a challenge.’ (female, 39 years old) discussion this study found that nurses are the support system for both the families and individuals with id. according to ally et al. (2018), transition process is not easy, and hence families need to be supported through the healthcare transition of adolescents with id to adulthood. for nurses to effectively provide support to the families and individuals with id, they need to involve other stakeholders such as other healthcare professionals, social workers and others in both the planning and execution of the support system. mcnally and mannan (2013) asserted that support systems make caring for individuals with id less stressful. lima-rodriguez et al. (2018) added that supporting families would promote the best outcomes for everyone, as families spend most of their time with their children. lindgren, soderberg and skar (2014) suggested that transition planning can be achieved only through support. in accordance with article 25 of the united nations convention of rights of persons with disabilities cited in lennox, mcpherson and van dooren (2015), individuals with id have the right to receive the highest standard of living without being discriminated. this calls upon nurses and other services to work together in ensuring that rights of individuals with id are not compromised. in south africa, the mental health act no. 17 of 2002, chapter iii (section 8), outlines that special precautions should be considered to ensure that persons designated in the care, treatment and rehabilitation services act in the best interest of the users with mental health problems. furthermore, the policy guidelines of child and adolescent mental health in south african national department of health (ndoh) (2003) reported that people should speak up, limit social discrimination and create opportunities for employment, recreation, schooling and reduction of socio-economic inequalities. the nurses also perceived their role as that of advocacy. transition advocacy has been recognised as an essential tool for transitioning youth, families and providers’ need to ensure care. through this process, the care provider can work with the youth and parents to obtain needed resources for the transition and eventual transfer process. nurses as care providers are not expected to focus on chronic disease management alone, and provision of information regarding available resources is not sufficient to ensure successful transition (okumura et al. 2015). furthermore, nurses should assist with navigating and managing resources. in addition, clarke, camilleri and goding (2015) stated that advocacy is central to the experience of self-esteem, self-development and empowerment. the other finding of the study was on health promotion as one of the nurses’ perceived roles in the transition of adolescents with id. according to mcnally and mannan (2013), the demand of caring for individuals with id is high and challenging. the nurses’ role in the promotion of health should include communicating with other stakeholders on the availability of services aimed at promoting the health of individuals with disabilities and their families. such services may include counselling services, rehabilitation services and social services for the provision of financial assistance and others. zhou et al. (2016) concluded that structured multidisciplinary transition programmes are necessary for the promotion of health. therefore, healthcare services should ensure that relevant services are in place and accessible. clinical and research implications evidence from this study indicates a need for a multi-sectoral approach where all stakeholders could be involved in the transition planning of adolescents with id. the roles played by all stakeholders will assist individuals with id to have a successful transition into adulthood and to be situated in their communities. further research on the role of nurses with the transition process of adolescents with id is needed. additional research and information from other healthcare providers and practitioners to explore their specific roles with regard to the transition of adolescents with id into adulthood is essential. personalised transition needs should also consider the nature, extent and degree of the intellectual disability. limitations this study was limited to a few care and rehabilitation centres and ngos in the gauteng province. other healthcare providers and mental healthcare practitioners did not take part in this study. therefore, the generalisation of the study findings is limited. conclusion the nurses in this study perceived their roles as that of support, advocacy and health promotion. the study showed that the transition of adolescents with id into adulthood would need a combined effort from all stakeholders to make it a success. acknowledgements this study was part of a doctoral study by the first author supervised by the second author at the university of south africa (unisa). the authors acknowledge the contribution made by all the participants and the institutions where the study was conducted. competing interests the authors declare that no competing interest exists. authors’ contributions g.r.m. and g.t.t. were involved in the conception and design of this study, data collection and data analysis. g.r.m., g.t.t. and o.f.i. drafted the manuscript, made critical revisions for intellectual content and approved the final manuscript for submission. funding information funding for this study was provided by the university of south africa. data availability statement data and materials are available on request from the first and second authors. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references ally, s., boyd, k., abells, d., amaria, k., hamdani, y., loh, a. et al., 2018, ‘improving transition to adulthood for adolescents with intellectual and developmental disabilities: proactive developmental and systems perspective’, canadian family physician 64(2), s37–s43. https://doi.org/64/suppl_2/s37[pii] al-yateem, n. & docherty, c., 2015, ‘transition: a concept of significance to nursing and health care professionals’, journal of nursing education and 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https://doi.org/10.1007/s00431-010-1364-7 sandelowski, m., 2010, ‘what’s in a name? qualitative description revisited’, research in nursing & health 33(1), 77–84. https://doi.org/10.1002/nur.20362 sharma, n., o’hare, k., antonelli, r.c. & sawicki, g.s., 2014, ‘transition care: future directions in education, health policy, and outcomes research’, academic pediatrics 14(2), 120–127. https://doi.org/10.1016/j.acap.2013.11.007 south african national department of health (ndoh), 2003, policy guidelines children: child and adolescent; mental health, government printers, pretoria. zhou, h., roberts, p., dhaliwal, s. & della, p., 2016, ‘transitioning adolescent and young adults with chronic disease and/or disabilities from paediatric to adult care services–an integrative review’, journal of clinical nursing 25(21–22), 3113–3130. https://doi.org/10.1111/jocn.13326 abstract mental health in western and non-western contexts epistemic hegemony in mental health zimbabwe: mental health challenges and ubuntu methodology results discussion conclusion acknowledgements references footnote about the author(s) oliver mutanga graduate school of education, nazarbayev university, astana, kazakhstan open distance learning research unit, college of education, university of south africa, pretoria, south africa citation mutanga o., 2025, ‘reflections on mental health, ngozi, and the dandemutande approach in zimbabwe’, african journal of disability 14(0), a1599. https://doi.org/10.4102/ajod.v14i0.1599 original research reflections on mental health, ngozi, and the dandemutande approach in zimbabwe oliver mutanga received: 19 oct. 2024; accepted: 18 mar. 2025; published: 09 june 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: western mental health models prioritise biomedical explanations and interventions at the expense of indigenous non-western belief systems that offer culturally relevant understandings of mental health. in zimbabwe, ngozi [reconciliatory and restorative spirits] play a significant role in shaping mental health experiences and perceptions. this article introduces the dandemutande [spiderweb] approach, an innovative framework that responds to the limitations of solely relying on the western-based mental health conceptualisation by considering a multidimensional approach that acknowledges and respects cultural and spiritual dimensions alongside western-based medical interventions to address mental health challenges in non-western contexts. objectives: this study aimed to explore the relationship between mental health challenges and ngozi, and how ngozi influences the understanding and management of mental health challenges in zimbabwe. method: a multi-layered, autoethnographic methodology integrating personal reflections, narrative accounts, the literature, and media analysis was employed to investigate how ngozi is believed to affect mental health outcomes. results: this article identifies ngozi as a significant and influential factor within zimbabwean cultures, which contributes to mental health issues. conclusion: the findings introduce the dandemutande approach to mental healthcare, which integrates cultural and spiritual dimensions with western-based medical interventions to address mental health challenges. contribution: this article highlights the importance of inclusive mental health practices that incorporate indigenous belief systems, for example, reparation and healing initiatives such as compensation. the proposed framework has the potential to positively contribute to mental healthcare in other non-western contexts where mental health has cultural and spiritual dimensions. keywords: ngozi; mental health; western perspectives; ubuntu; unhu; dandemutande approach; zimbabwe. mental health in western and non-western contexts the global mental health environment is marked by significant disparities in understanding and treatment approaches (taylor & burgess 2019). this is primarily because of differences in how mental health challenges are conceptualised and the frameworks used to study them, among other factors. western mental health frameworks, largely shaped by biomedical models, tend to view mental health challenges through a primarily individualistic lens (addo 2018; chandler & shera 1992). the diagnostic and statistical manual of mental disorders (dsm), its variants, dsm-5 and dsm-5-tr, and the international classification of diseases (icd) are widely utilised diagnostic tools that categorise mental challenges based on observable symptoms and individual behavioural patterns (borgogna, owen & aita 2024; utoblo 2017; world health organization 2024). these frameworks emphasise biological and psychological factors (addo 2018; brijnath & antoniades 2018). therapeutic approaches, such as cognitive behavioural therapy (cbt) and psychodynamic therapy, which typically focus on individual-level interventions aimed at modifying maladaptive thoughts, behaviours, or emotional patterns (annelisa 2014) are predominantly employed. emphasis is frequently placed on identifying and treating pathology with the goal of returning individuals to a perceived state of ‘normality’ as defined by western societal standards (taylor & burgess 2019). although this approach is relevant and effective in certain instances, it faces criticism for its inherent limitations when applied across diverse cultural contexts (borgogna et al. 2024). for instance, the dsm-5 has been challenged for its potential inability to fully consider cultural differences in mental health diagnoses (zagaria & zennaro 2024). moreover, the role of cultural narratives and language in shaping the definition and understanding of mental health issues is often neglected in these predominantly western frameworks (addo 2018). furthermore, in western traditions, there is a history separating the mind and the body, while perceiving mental health challenges (stein et al. 2024). currently, in these contexts, mental challenges are treated as medical issues – health conditions treatable only with medicines and therapies. this contrasts with numerous non-western views that regard mental and physical health as intertwined aspects of holistic well-being (meaden 2024). in addition, the focus on individual responsibility and self-reliance prevalent in western societies can hinder help-seeking behaviour, particularly for individuals without adequate social support or resources to independently navigate the mental health system (almu & amzat 2024). most non-western traditions’ understandings of mental health often emphasise the interconnectedness of the individual, family, community, and the spiritual realm (almu & amzat 2024; kong et al. 2023; molot 2017). for instance, many african cultures incorporate supernatural elements into their understanding of health and illness (ayinde et al. 2023; shange & ross 2022). mental distress is frequently linked to social, environmental, spiritual, or ancestral factors in addition to biological or psychological causes (almu & amzat 2024; molot 2017), thus framing it as an issue that extends beyond the individual. traditional healing practices, involving healers, spiritual leaders, and community members, play a central role in addressing mental health challenges (berhe et al. 2024; wüthrich-grossenbacher et al. 2023). these practices often incorporate rituals, ceremonies, herbal remedies, and spiritual interventions aimed at restoring balance and harmony within the individual and their environment (bartholomew 2016; ngobe, semenya & sodi 2021). the major difference between western and non-western conceptualisation lies in the aetiology and treatment of mental health challenges. western models primarily focus on biological and psychological factors, employing interventions aimed at modifying individual-level processes. in contrast, traditional african approaches often consider social, environmental, spiritual, and ancestral influences, incorporating interventions that engage the entire community and spiritual realm (kong et al. 2023). the views of mental illness in some african societies are deeply entrenched in socio-cultural contexts, including the attribution of mental illness to spiritual causes and reliance on traditional mental healthcare methods that engage the entire community and spiritual world (almu & amzat 2024; kong et al. 2023). these divergent frameworks shape how mental health is understood and addressed globally, highlighting the need for comprehensive approaches (taylor & burgess 2019). epistemic hegemony in mental health the marginalisation of non-western conceptualisations has resulted in a significant power imbalance, with western models often dominating research, policy, and practice (kelley 2021; taylor & burgess 2019). this is particularly true in the context of colonial psychiatry history, where western psychiatric practices were often imposed on colonised populations, leading to a suppression of indigenous knowledge and practices (jeater 2020a, 2020b). colonial psychiatry sought to interpret mental health challenge symptoms in non-western cultures, forming the basis for ethnopsychiatry while exposing the political agendas underlying the discipline (buoli & giannuli 2021). different colonial empires employed varying approaches, with the british using psychiatry for political control and the french focusing on cultural assimilation (buoli & giannuli 2021). the dominance of western-centric mental health frameworks has had several significant consequences for non-western societies. firstly, it has led to a misdiagnosis and mistreatment of individuals whose experiences are not easily categorised within western diagnostic frameworks (ivbijaro 2010). cultural behaviours and expressions of distress, when interpreted through a western lens, may be misdiagnosed as pathological (jarvis & kirmayer 2021), resulting in mistreatment, poor outcomes, and limited access to culturally relevant care (kelley 2021; taylor & burgess 2019). secondly, it has undermined the value and validity of traditional healing and intervention practices, leading to their marginalisation and a loss of valuable indigenous knowledge (kong et al. 2023; taylor & burgess 2019). this marginalisation is further compounded by limited mental health resources and infrastructure, particularly in the global south (almu & amzat 2024). for example, the absence of culturally adapted, evidence-based interventions for aboriginal youth in canada demonstrates the gap between western-centric approaches and indigenous perspectives (williams & mumtaz 2008). furthermore, western models often prioritise individual-level interventions, overlooking the community and family support integral to mental well-being in non-western cultures (wright 2021). similarly, chandler and shera (1992) highlight the differences in mental health conceptualisations between pacific-asian cultures and western cultures. they suggest that western-centric practices may overlook the familial and communal aspects that are integral to mental health in non-western societies. this can lead to ineffective interventions that fail to address the underlying socio-cultural factors that contribute to mental distress (williams & mumtaz 2008). the emphasis on western notions of ‘evidence’ can also lead to the marginalisation of aboriginal knowledge and practices, impacting funding, programming, and opportunities for mental health and well-being in indigenous communities (williams & mumtaz 2008). western diagnostic categories and treatment protocols impose epistemic hegemony, privileging western knowledge systems while silencing diverse perspectives (noda 2020). this dominance is evident in cross-cultural research, where western frameworks shape methodologies and interpretations (kelley 2021), underscoring the need for culturally responsive practices in non-western contexts. kong et al. (2023), emphasise the need for dialogue between western and african mental health frameworks to foster understanding and respect for diverse healing practices. kelley (2021) makes similar suggestion by calling for the incorporation of local cultural understandings and practices into mental health research to challenge colonial frameworks. in response to this call, this article seeks to answer the critical question: what is the relationship between ngozi and mental health challenges, and how does ngozi shape the understanding and management of these challenges within the zimbabwean context? ngozi ngozi, a shona term for a spirit that is believed to inflict harm or illness as retribution for past wrongs (jeater 2020a, 2020b), plays a significant role in the conceptualisation of mental health. other scholars refer to ngozi as avenging spirits, but just as jeater (2020a) states, the reconciliation and reparation heal broken human relationships between individuals, and within families and communities. as such, i argue that the primary aim of these spirits is not to avenge but to restore relations; hence, i refer to them as reconciliatory and restorative spirits. samkange and samkange (1980) note that: mashonas believe that when a person dies his spirit lives on. so, if a person is wronged and that wrong is not righted while he is still alive and the person dies while nursing a legitimate grievance, or is murdered, his aggrieved spirit will return, after his death, to avenge itself on the person or family of those who wronged him. such an aggrieved spirit is called ngozi. until propitiated, ngozi is unforgiving and uncompromising. (p. 51) unlike western ideologies that differentiate between murder and accidental death, traditional shona belief holds that the spilling of human blood, intentional or accidental, results in ngozi. ngozi seeks restorative justice, aiming to restore balance and fairness rather than acting out of spite or vengeance. this understanding reinforces the communal values and collective responsibility inherent in ubuntu or unhu. as gelfand (1973) explains: there is the ngozi or angered spirit of a person murdered. such a spirit will seek revenge on the members of the family responsible for the death whether it was intentional, unintentional or purely an accident. no one is permitted to kill. the well-being and right to survive is the prerogative of every human being. (p. 122) gelfand’s account highlights the understanding of ngozi as a mechanism for restorative justice. this resonates strongly with historical and contemporary cases, such as those documented by the catholic commission for justice and peace (ccjp). testimonies collected by the ccjp in zimbabwe in the early 1980s referenced former soldiers tormented by ngozi, who sought out the families of those they had killed to negotiate reparations and seek redress (ccjp 1997). in some instances, ngozi cases reflect longstanding grievances that may date back decades or even centuries (jeater 2020a). ngozi is said to cause misfortunes, serious illnesses, or deaths within the perpetrator’s family until they acknowledge the wrongdoing and undertake the culturally recognised reparations for the affected family. this compensation often involves appeasing the ngozi through reparations such as offering cattle to the victim’s family. the purpose is to act as a deterrent against wrongdoing, reinforcing social norms and the importance of communal responsibility. the relationship between ngozi and mental health is underexplored in literature. the specific characteristics and actions of ngozi vary across different ethnic groups and traditional belief systems, but in most cases, mental distress or challenges are manifested. some cultures view ngozi as ancestors seeking justice for past grievances, for example, past killings, while others perceive them as independent entities acting on their own accord (tobias et al. 2014). the actions of these spirits are often believed to be triggered by specific events or actions, such as transgressions against social norms, unaddressed familial conflicts, or unresolved disputes. these beliefs are not simply abstract concepts; they are integral to the daily lives of many individuals, influencing their experiences and perceptions of the world and their responses to adversity. traditional rituals and ceremonies often play a crucial role in appeasing ngozi spirits and restoring balance to the community (tobias et al. 2014). these rituals might involve offerings, sacrifices, or cleansing ceremonies designed to mitigate the spirits’ anger and prevent further harm (quiroz 2015). in ghana, spiritual involvement in the treatment of illness and healthcare is deeply rooted in the culture (asare & danquah 2017). mental conditions are often attributed to supernatural powers (asare & danquah 2017). this belief system, while potentially complicating diagnosis and treatment from a western biomedical perspective, can also be a source of hope and facilitate recovery when integrated into treatment plans (asare & danquah 2017). integrating ngozi beliefs with modern mental health practices can significantly enhance treatment outcomes by addressing both spiritual and psychological needs. for instance, mental health interventions that incorporate traditional rituals alongside clinical therapies may foster greater community acceptance and individual engagement. this holistic approach not only respects culture but also utilises indigenous knowledge to create more effective and sustainable mental health solutions. by bridging the gap between ngozi-based understandings and western medical models, the dandemutande framework, a culturally responsive mental health framework that views mental health support as an interconnected network (see the discussion section for more information on the framework), exemplifies how culturally sensitive practices can lead to comprehensive care that honours both traditional and contemporary perspectives. this underscores the importance of culturally sensitive approaches that acknowledge and incorporate these beliefs. however, while some researchers (ashforth 2005; niehaus 2013) dismiss ngozi spirits as myths, such a position assumes that reality is only verifiable through certain empirical frameworks and overlooks other epistemological standpoints. for many communities in africa, ngozi is not a myth, but a lived reality that influences mental health and social dynamics (mbiti 1969). in focusing solely on biomedical perspectives (craddock & owen 2010; drysdale et al. 2017; kapur, phillips & insel 2012), most studies run the risk of marginalising interpretations rooted in spiritual or cultural worldviews. insel and quirion (2005) contend that psychiatry’s public health impact requires understanding mental disorders as brain disorders, a stance reflected in the dsm-5’s symptom-based criteria (american psychiatric association 2013). while such biomedical approaches and clinical interventions remain highly relevant, they can be further enhanced when they respectfully integrate alternative epistemologies, such as the proposed dandemutande approach, rather than disregarding them as mythical, thereby disrespecting and undervaluing them. doing so moves beyond simplistic distinctions between ‘myth’ and ‘reality’ and acknowledges that spiritual beliefs, even if not subject to the same forms of empirical verification, are genuinely operative in people’s lives. this is not to reject scientific inquiry, but rather to argue that a multiplicity of knowledge systems should be recognised and valued. acknowledging that ngozi is integral to certain cultures, affirms that these beliefs deserve attention precisely because they shape experiences of health, well-being and community. in contrast, scholars such as whyte and ingstad (1995) and kirmayer (2006) argue for the inclusion of cultural contexts to better understand mental health and disability experiences. kirmayer (2006) emphasises that mental health cannot be fully comprehended without considering the cultural environments in which individuals live. in disability studies, goodley (2014) highlights the contributions of non-western scholars, arguing that different colonial histories and the suffering of indigenous groups lead to diverse understandings of disablism. such an epistemological perspective is essential for recognising the influence of ngozi on how mental health and disability are understood and experienced across different communities. by engaging with and incorporating indigenous knowledge systems, mental health professionals can offer interventions that are culturally sensitive and more effective (patel & prince 2010; whyte & ingstad 1995). this understanding disrupts the dominance of western biomedical paradigms and encourages a pluralistic view of mental health that honours the diverse experiences and beliefs of various populations. building on these scholarly insights, historical and contemporary cases further illustrate the profound impact of ngozi beliefs on mental health and community dynamics in zimbabwe. zimbabwe: mental health challenges and ubuntu in zimbabwe, especially among the shona tribal groups, ngozi play a significant role in mental health and disability (mugumbate & mtetwa 2014; mukushi, makhubele & mabvurira 2019). in contemporary zimbabwe, mental health challenges are prevalent. research indicates substantial prevalence rates of mental disorders, including depression and anxiety (chibanda et al. 2016; langhaug et al. 2010). the estimated treatment gap for major depression is 67% (kohn et al. 2004). zimbabwe counts a mere 16 psychiatrists (chibanda et al. 2015), and traditional healers remain the initial point of contact for nearly one-third of patients (patel, simunyu & gwanzura 1997). as in many other african contexts, the understanding of mental health in zimbabwe is profoundly informed by cultural and spiritual beliefs (potgieter & van rooyen 2018). for instance, mental distress might be attributed to ancestral spirits, witchcraft, or imbalances in spiritual energy (potgieter & van rooyen 2018). the preference for traditional healing methods is often high in these contexts, with individuals frequently seeking help from traditional healers before engaging with, or alongside western medical professionals (molot 2017; potgieter & van rooyen 2018). the use of faith-based and traditional healing methods for mental disorders in african contexts is well-researched, but normative responses often fall into two camps: those focused on the biomedical model and those adopting a more local perspective (kong et al. 2023). this dichotomy between universalist and relativist approaches reflects the tension between western and non-western mental health frameworks. traditional african societies, including those in zimbabwe, perceive reality as a dual construct comprising both material and spiritual realms. human beings embody this duality, existing simultaneously as matter and spirit. life is viewed as an enduring continuum that transforms from one form to another; thus, death is not an end in itself but a significant transition from physical existence to a purely spiritual reality. this perspective explains the numerous rituals associated with death among zimbabwean ethnic groups, all aimed at assisting the enduring spirit in entering a higher spiritual realm. within this spiritual framework, ancestral spirits hold considerable power over the material world and are believed to have control on the living. this belief is central to understanding the concept of ngozi among the shona people of zimbabwe. ubuntu or unhu philosophy, emphasising communal relations and harmony, provides the guiding principles for human interactions and underpins this understanding. justice and fairness are cornerstones of these communities, and social equilibrium is maintained through cooperative effort and mutual assistance. when this balance is disrupted, the community is expected to take restorative actions to repair relationships and restore harmony, as failing to do so can lead to disorder and conflict. ndabaningi sithole (1972:36–37), in his novel, the polygamist, shows ubuntu-based justice in action within the zimbabwean traditional contexts. in an extremely unusual case in which matutu’s son committed the grave act of sleeping with one of his father’s wives, a violation that, according to ndebele tradition, was equivalent to sleeping with one of his mothers. the community saw this not just as a private transgression, but as a public threat to societal norms and stability. the presiding judge, mlotshwa, explained the gravity of the offence (sithole 1972): this one is a crime against the people. it breaks the custom of the people. it threatens every home. if this evil is allowed to go on unpunished … we shall have poisoned ourselves. (p. 36) declaring the son as having ‘become a wild animal’, mlotshwa ordered him tied to a tree and flogged with reins, tools normally reserved for taming cattle. this act was not merely punitive but symbolic, aiming to rid the young man of his ‘wild animal’ tendencies and reintegrate him into the community. after the punishment, matutu’s son tearfully repented and promised to reform. as illustrated by this case, ubuntu or unhu places the group above the individual, asserting that the community imparts humanity to its members (see gade 2011; metz 2023; mutanga & haihambo 2024; samkange & samkange 1980). this is encapsulated in the saying ‘i am because we are; we are because i am’, which carries profound implications for social responsibility. if a family member commits an offence, such as matutu’s son, or a grave act like murder, the entire family or community bears collective responsibility. this collective responsibility reflects the belief that an individual’s behaviour can bring misfortune or calamity upon their entire lineage. thus, community members are expected to uphold moral conduct, and an individual’s private life becomes the concern of the wider family – blurring the private-public life distinction (mutanga 2025). against this backdrop, the concept of ngozi emerges as a critical mechanism for maintaining justice and social equilibrium. when someone is killed, the victim’s family suffers the loss of their lineage’s potential growth and continuity. in the shona novel muchadura [you shall confess], emmanuel ribeiro (1967) illustrates how the ngozi of a murdered person can bring unaccountable misfortunes upon the murderer and their family, serving as both punishment and a demand for justice. the novel focuses on the murder of chipo who was murdered by tavengwa, her husband. chipo returns as ngozi and uses her daughter, muchadura, as a medium to seek justice. chipo’s ngozi causes a series of tragedies. overwhelmed by the events, the tavengwa’s family ultimately confesses and pays recompense for the murder. this narrative reflects the shona people’s belief in the sanctity of life, which underpinned ngozi’s role as a traditional justice system. however, these indigenous practices were disrupted by colonial intervention. in 1899, the colonial government in rhodesia enacted the witchcraft suppression act, aiming to suppress african cultures, belief systems, and unwritten moral and legal frameworks (vambe 2009). by applying constitutional law exclusively to white people while subjecting black people to both customary and constitutional law, the colonial government marginalised systems such as ngozi, weakening their authority and eroding social cohesion. this exploration of ngozi and its role in maintaining justice and social cohesion highlights the profound impact of indigenous practices on community life. to further examine these dynamics, the following section outlines the methodology employed in this study, detailing the approaches used. methodology this study employed a multi-layered methodology, combining personal reflections, narrative accounts, literature, and media analysis to examine how ngozi beliefs shape mental health perceptions in zimbabwean communities. the methodological approach was designed to capture personal, cultural, and societal dimensions of these beliefs and their impact on mental health. some key stories emerged during an ethnographic study i conducted in northern zimbabwe, offering valuable insights into how ngozi beliefs influence perceptions of mental health. although this was not the original focus of the study, this account became a foundational aspect of this article. drawing on my lived experiences as a shona individual raised in zimbabwean villages, i used personal reflections to contextualise ngozi beliefs and their role in everyday life. these reflections provided a lens through which to interpret broader community perspectives. to complement these reflections, i conducted a detailed review of literature, including zimbabwean novels and ethnographies, which offered cultural narratives and historical perspectives on ngozi and its relationship to mental health. in addition, newspaper articles and media stories were analysed to understand how ngozi is represented in public discourse and how its role in mental health challenges is discussed in zimbabwean society. the data collected from narratives, personal reflections, literature, and media analysis were analysed thematically, guided by braun and clarke’s (2006) framework which involved familiarisation with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and writing up findings. this approach allowed for a systematic and thorough examination of the data, ensuring that emerging themes were grounded in the content. one central theme was the role of ngozi in enforcing communal responsibility. stories and reflections highlighted how ngozi beliefs embed accountability within families and communities. for example, during fieldwork, a narrative was shared about a man whose mental health challenges were attributed to ngozi stemming from an unresolved murder in his family. community members explained that the ngozi did not seek reparations from the individual experiencing mental challenges, but from the whole family, reinforcing the ubuntu or unhu philosophy of shared responsibility. this theme demonstrates how ngozi beliefs extend beyond individual behaviour, positioning the family and community as collectively responsible for addressing wrongs and maintaining balance. the fear of ngozi serves as a deterrent, encouraging ethical behaviour to prevent spiritual disturbances and associated challenges, including mental health. another theme was how ngozi beliefs shape interpretations of illness, mental health, disability, and death. narratives and media accounts revealed that mental distress is often attributed to spiritual causes, such as ancestral grievances. for instance, one story recounted how a man’s mental health challenges were linked to ngozi, believed to have been triggered by his family’s failure to comply with instructions from the spirit of a deceased former headman. the final theme explored the connection between justice, reconciliation, and mental health. rituals associated with ngozi were seen as not only addressing past wrongs but also fostering healing for both the afflicted individual and the wider community. for example, a common belief is that if a murder remains unaddressed, the spirit of the victim will continue to wreak havoc until justice is achieved, often through reparations or public acknowledgement of wrongdoing. this theme highlights the dual function of ngozi rituals: they provide justice for the wronged and reconciliation for the wrongdoer and their community. by resolving spiritual grievances, these rituals can alleviate mental distress attributed to ngozi and restore harmony within families and communities. this process underscores the importance of integrating culturally relevant justice mechanisms into mental health interventions, particularly in contexts where spiritual interpretations of illness are prevalent. the synthesis of personal reflections, narrative accounts, literature, and media analysis, combined with thematic analysis, provides a holistic understanding of ngozi beliefs and their relationship to mental health. these findings inform the development of the dandemutande framework, a culturally responsive model that integrates the spiritual and communal dimensions of ngozi into mental health interventions. the following section presents the findings of this study, offering a deeper exploration of the identified themes and their significance in understanding how ngozi beliefs shape mental health experiences and responses in zimbabwean society. ethical considerations ethical approval to undertake the ethnographic study reported in some sections in this article was granted by the zimbabwe’s mashonaland central provincial government and the local traditional leaders. ethical clearance number adm 27/18 was received on 21 june 2022. results this section presents the findings of the study, focusing on the interplay between ngozi beliefs, mental health, and community dynamics. through personal reflections, ethnographic accounts, and documented cases, i explore how ngozi manifests in individual and communal experiences and how these beliefs inform local understandings of justice, responsibility, and well-being. personal reflections on ngozi growing up in a christian household, i was taught that the dead know nothing, a belief rooted in biblical teachings. yet, paradoxically, the same scriptures acknowledge the existence of spirits, often labelling them as evil. this duality in my religious upbringing left me both sceptical and intrigued by stories of the supernatural, especially those involving ngozi. most people in our village were christians, so ngozi was referenced as evil spirits, and the view was that they could not defeat christ’s power. so, although we heard rumours of families suspected to have ngozi (in one case, the entire family perished, except for the mother and her surviving grandchildren; this is unusual even for me), i do not remember hearing about traditional healers visiting them. at least, if they did visit them, they did so under the cover of the night. to further illustrate how ngozi beliefs shape understandings of mental health within communities, i now present specific cases from zimbabwe. these stories underscore how ngozi beliefs deeply influence perceptions, responses, and social dynamics related to mental health challenges. stories of ngozi and mental health the narratives presented here are drawn from various sources to illustrate how ngozi beliefs influence perceptions of mental health. the chapoto story is derived from my ethnographic fieldwork in northern zimbabwe, capturing first-hand experiences and community interpretations, while the chokuda and maziofa cases are based on media reports, reflecting broader public discourses on ngozi and mental health. the man at chapoto one afternoon, during my ethnographic studies in northern zimbabwe, i encountered a man whose untidy appearance and erratic behaviour suggested he was grappling with mental health challenges. locals shared his story, explaining how his condition deteriorated after visiting his mentally ill brother, whose own symptoms subsequently improved. this exchange of affliction puzzled the community, who attributed the events to ngozi. now, his family fears visiting him, worried that the affliction might transfer back or spread further. they rely on the kindness of community members to check on him and provide food. remarkably, he often walks the treacherous 65-kilometre stretch between chapoto and angwa business centres, an area teeming with wild animals such as elephants, buffaloes, and lions. yet, he remains unharmed. it is as if an unseen force protects him. the family’s reluctance to visit him, fearing the affliction might transfer back, reflects how ngozi beliefs shape familial and communal responses to mental health challenges. the story illustrates how ngozi beliefs embed a sense of shared responsibility and fear within communities, influencing how they interpret and manage mental health challenges. the mozambican herdsman as we went deeper into discussions about mental health and ngozi, another story emerged. it was about a refugee from mozambique who had worked as a herdsman for a family in another part of zimbabwe. during the mozambican civil war in the 1980s and early 1990s, many mozambicans fled to zimbabwe, some finding refuge in camps such as nyangombe near my village, others integrating into local communities, offering their labour in exchange for money and food. this particular herdsman made an agreement that he would work in exchange for cattle. after he had toiled for years, and as his herd of cattle grew, he expressed a desire to return to mozambique with his livestock. the family he worked for initially agreed, but later, driven by greed, plotted to reclaim the cattle. they pursued the herdsman and murdered him along the way. what followed was a series of misfortunes that befell the murderer’s family. the avenging spirit of the slain herdsman began to torment their children, manifesting through unexplained illnesses and disturbing occurrences. the ngozi spirit possessed a family member and demanded justice. the spirit’s terms were explicit: it wanted a wife as compensation. the family was required to take their own daughter to the herdsman’s relatives in mozambique. the spirit gave them the directions. desperate and terrified, the mother chose to sacrifice her stepdaughter instead, taking her across the border to fulfil the demand. tragically, upon arrival in mozambique, on their way, the mother began exhibiting severe mental health challenges. to this day, her whereabouts remain unknown. this incident underscores the impact of unresolved spiritual grievances on individuals’ well-being. furthermore, it highlights the role of ngozi as a mechanism for enforcing justice and reconciliation, with direct implications for mental health in the affected community. despite my christian upbringing, where the african traditional supernatural is often dismissed or demonised, i could not help but acknowledge the patterns emerging from such narratives. i had come across numerous accounts on youtube1 and in newspapers where ngozi was manifested, including before traditional chiefs. one such case is the chokuda case. the chokuda case in 2008, moses, an opposition party member, was murdered by foster and farai machaya, the sons of the midlands provincial governor, jason machaya; abel maphosa, and two brothers, edmore and bothwell gana – individuals connected to a ruling party official (newsday 2012). following his death, his ngozi began haunting the perpetrators and their families, demanding justice. extraordinary events occurred. the first strange occurrence involved governor machaya’s daughter. she inexplicably left home and sought refuge in a graveyard. when confronted, she claimed she was with the late moses. the second incident saw the local police attempting to bury moses without his father’s consent. however, they were met with an inexplicable force: 10 officers tried to lift the coffin, but it would not budge. the third incident was the sudden mental breakdown of the magistrate who granted bail to the accused. turmoil persisted until traditional reparations were made, including the payment of 35 cattle and us$15 000 by the machaya’s family to moses’s family. only after this act of restitution was moses laid to rest, and peace restored (the newsday 2020). this case reveals how ngozi beliefs continue to hold communities accountable, offering a cultural framework for understanding justice, reconciliation, and mental health. the maziofa case in 2021, the maziofa family from rusape confessed to the 2014 murder of school teacher bernard chigwese after years of torment by his ngozi. following the crime, the family concealed the murder, but they began to experience a series of misfortunes, including unexplained illnesses, deaths, and mental health challenges (the eye 2021). in one instance, a boy reportedly hallucinated, crying out, ‘makandiurayirei?’ [why did you kill me?] before tragically taking his own life. overwhelmed by these events, the family sought help from traditional leaders, admitting their guilt and requesting mediation with chigwese’s family. as one family representative explained: they [the perpetrators] were arrested, but we ensured that the case died a natural death. however, chigwese’s spirit is now haunting our family, we no longer know any peace. the family is now experiencing misfortunes all the time, while some are developing mental illnesses. (kadzura 2021) these findings reveal the profound influence of ngozi on individual and communal mental health, justice, and social harmony. they challenge conventional western approaches to mental health by highlighting the importance of culturally embedded beliefs. these insights inform the development of the dandemutande framework, which seeks to harmonise indigenous beliefs with contemporary mental health practices to foster holistic well-being. in the following section, i explore how these insights can inform the development of holistic mental health interventions that bridge traditional practices and contemporary approaches. discussion reflecting on these experiences, i recognise the importance of integrating spiritual or cultural understanding into discussions about mental health. while the reported narratives underscore ngozi as a deterrent against wrongdoing and highlight the collective responsibility integral to ubuntu philosophy (mbiti 1969), it is not intended to suggest that all mental distress stems from personal or familial misdeeds. in many african cosmologies, what appears as ‘blame’ is often an acknowledgment that individuals are embedded within broader community networks, and that wrongdoing, even by extended family, may have communal consequences (samkange & samkange 1980). however, it is crucial to stress that ngozi can be interpreted differently by different people. by recognising this, we can avoid conflating specific moral or spiritual interpretations with a universal ‘blaming’ of mental health challenges or disabilities, while still appreciating how cultural beliefs about responsibility and interconnectedness inform understandings of mental health. in retelling these stories, my aim is not to verify or dismiss the supernatural, or to blame individuals or families, but to portray how spiritual beliefs shape understandings of justice and responsibility. for communities that uphold these beliefs, the occurrences are both real and meaningful. these cases exemplify the profound impact that ngozi can have on both individual mental health and community dynamics, highlighting the necessity for integrated mental health interventions that respect and incorporate indigenous spiritual frameworks. however, despite the rich historical narratives and literary explorations of ngozi, there remains a notable absence of research examining its contemporary impact on mental health in zimbabwe. most studies to date are historical in nature or presented through novels, which, while valuable, do not provide current practices and perceptions. recognising this gap, this study seeks to investigate how beliefs in ngozi influence the understanding and management of mental health challenges within zimbabwean communities. integrating ngozi into mental health interventions is crucial for effective care. the friendship bench, a mental health intervention developed in zimbabwe in 2006, offers a promising model for community-based care. this programme, influenced by the indigenous practices of family aunts who acted as advisers and counsellors, provides problem-solving therapy through trained lay health workers known as ‘grandmothers’, who offer culturally adapted support (the friendship bench 2024). the friendship bench programme, influenced by indigenous practices, demonstrates how integrating traditional advisory roles with clinical therapies can enhance community engagement and treatment efficacy. this model serves as a precursor to the dandemutande framework, which seeks to further harmonise traditional beliefs with modern mental health practices. the profound influence of ngozi on social harmony and individual well-being in zimbabwean communities highlights a critical intersection between cultural beliefs and mental health. despite the significant role that ngozi plays in shaping perceptions and responses to mental health challenges, there is a noticeable gap in the integration of these indigenous beliefs into formal mental health interventions. this disconnect not only hampers the effectiveness of mental health services but also overlooks the rich cultural frameworks that can contribute to more holistic mental healthcare. these stories highlight how deeply our cultural beliefs, spirituality, and mental health are interconnected in zimbabwe. it is important to clarify that within many african cosmologies, mental distress can sometimes be attributed to past wrongs (mbiti 1969), not necessarily those of the individual directly affected, but possibly of extended family or ancestors. while sharing these accounts does not imply that all mental challenges result from wrongdoing, my experiences in these communities suggest that this perspective is genuinely held and used to explain certain forms of distress. at the same time, i acknowledge that attributing mental illness to spiritual causes may risk stigmatising the individual. my goal is neither to impose this worldview nor to dismiss other explanations, but to convey how beliefs about communal interconnectedness inform local understandings of mental health. this will ensure that cultural beliefs are acknowledged and integrated as appropriate, facilitating engagement in treatment while respecting the values of the individual and community. the experiences of individuals such as the man at chapoto business centre demonstrate that ngozi plays a significant role in our society, influencing how we understand mental health, illness, justice, and our relationships with each other. these accounts challenge the conventional western approaches to mental health interventions i have encountered, which often emphasise clinical diagnoses and treatments while overlooking the cultural and spiritual dimensions integral to our context. dismissing these beliefs not only alienates those who hold them but also potentially hinders the healing process. i find myself caught between two worlds: the christian teachings of my youth and the undeniable presence of cultural beliefs in ngozi. whether labelled as a myth, evil or not, the existence of ngozi is a reality in many communities in zimbabwe, underscoring the need for mental health approaches that fully address our cultural context. the stories of the man at chapoto business centre, the tormented family haunted by the herdsman’s ngozi, the maziofa and the chokuda cases, are not just tales of the supernatural; they are narratives that highlight the intersection of spirituality, justice, and mental well-being. they call for a more comprehensive approach that respects and incorporates ngozi, rather than dismissing it outright. the chokuda case exemplifies the need for interventions that address both spiritual and psychological dimensions, a core principle of the dandemutande framework (figure 1). by integrating legal accountability with traditional rituals, the framework ensures holistic justice and mental well-being. figure 1: dandemutande [spiderweb] framework. the dandemutande framework emerged from my analysis of the data that highlights the spiritual or cultural dimensions of mental health. it offers such an approach, drawing its conceptual inspiration from the intricate and interconnected nature of a spiderweb, known in shona as dandemutande. the individual experiencing mental health challenges is positioned at its centre. surrounding the individual are various strands representing interventions from both western and african traditions, including spiritual support, medical and psychiatric interventions, community and family involvement, and alternative therapies. the dandemutande framework (figure 1) visualises mental health support as a multidimensional network where each strand represents different interventions and support systems. the intervention strands of the spiderweb are not fixed but dynamic, allowing for interventions to alternate and adapt based on the individual’s mental condition and underlying causes. this flexibility acknowledges that mental health is not static and that support mechanisms must be responsive to change. at the heart of the dandemutande lies the person with mental health challenges, emphasising the individual’s significance and the personalised nature of care required. spiritual support incorporates indigenous beliefs, rituals, and practices such as acknowledging the role of ngozi and engaging traditional healers or spiritual leaders. medical and psychiatric interventions utilise western medical practices, including psychotherapy, psychiatric evaluations, and medication when necessary. alternative therapies incorporating herbal remedies that align with the individual’s beliefs and preferences are also important. the dandemutande framework’s strength lies in its holistic and integrative nature, broadening the available interventions and ensuring that care is comprehensive. by recognising multiple forms of healing and support, the framework expands the options available to individuals. integrating traditional beliefs with modern interventions respects the individual’s cultural heritage, which can enhance engagement and effectiveness. for instance, acknowledging the role of ngozi can address underlying spiritual concerns that might be overlooked in western models. ngozi, as a mechanism for communal responsibility informs the framework’s emphasis on community and family involvement, ensuring that mental health interventions engage the broader social network surrounding the individual. notwithstanding the value of western-based interventions, the man at chapoto business centre appears to need spiritual intervention as a matter of priority. moreover, the framework encourages different healing practices to work in concert rather than in opposition. this collaboration can lead to more effective outcomes as it addresses the physical, emotional, spiritual, and social dimensions of mental health. the central focus on the individual allows for personalised treatment plans tailored to the unique needs, beliefs, and circumstances of each person. the dandemutande framework bridges western medical interventions and african traditional practices by recognising the interconnectedness of mental health, spiritual reconciliation, and communal well-being. this holistic framework addresses the limitations of isolated approaches by weaving together diverse healing practices to achieve meaningful, culturally resonant solutions. while some may argue that integrating traditional beliefs could complicate clinical practices, the dandemutande framework addresses this by providing structured guidelines that harmonise both approaches, ensuring comprehensive and respectful care. in the case of the man who was allegedly having mental health challenges i saw at chapoto business centre, the family might first consult with traditional healers to determine the demands of the ngozi and take necessary steps to address them, such as offering reparations or performing rituals for reconciliation. alongside this spiritual intervention, family members experiencing mental health challenges or illnesses can seek treatment at healthcare centres for psychiatric or medical care as shown in figure 2. figure 2: dandemutande framework-informed mental health intervention approach. the dandemutande framework would have resolved the chokuda case by running the legal and spiritual processes concurrently. while court prosecutions ensure accountability for the perpetrators, traditional rituals would address the spiritual dimension to appease the ngozi spirit. this dual pathway prevents the situation from escalating into further spiritual harm, such as the mental distress experienced by the governor’s daughter. both families would also engage in counselling and traditional healing rituals to foster reconciliation and emotional healing. this collective, integrated process strengthens the community fabric and ensures holistic justice for all involved. for families experiencing recurrent mental distress, illnesses, or unexplained deaths, even in the absence of manifest ngozi, the dandemutande approach encourages proactive consultation with traditional healers to rule out unresolved ancestral grievances. at the same time, mental health centres can integrate culturally sensitive screening questions to identify whether ngozi-related issues may be a contributing factor. by addressing both spiritual and biomedical dimensions early, families can avoid compounding distress and achieve more comprehensive care. community and family involvement is essential in utilising the ubuntu or unhu philosophy to engage members in the healing process. this approach reinforces social support networks that are vital for recovery, aligning with ubuntu or unhu’s emphasis on communal relations and harmony. the ‘we’ invoked in ubuntu incorporates individuals, families, society, the living, the non-living, and non-human entities (mutanga & haihambo 2023), all of whom are important in mental health interventions. some critics argue that ubuntu philosophy suppresses individual freedoms (gyekye 1997; matolino & kwindingwi 2013). however, this perspective overlooks the balance ubuntu seeks between individual and collective well-being. stories in this article reflect why the shona people take interest in everyone’s affairs, as personal actions can influence the harmony of the whole family and society. implementing the dandemutande framework has significant implications for mental health practice. policymakers can design inclusive policies that incorporate indigenous practices and promote integrated mental health models. mental health professionals can be trained to understand and incorporate cultural beliefs into their practice, enhancing their cultural competence. the friendship bench concept discussed earlier, which took the role of traditional aunts, is a powerful example of how traditional approaches can be incorporated into contemporary systems. elsewhere, mutanga and haihambo (2024) have discussed how rwanda successfully used its traditional community courts to fast-track the genocide trials. empowering communities to take an active role in mental health interventions fosters ownership and sustainability of mental health initiatives. if such successful integrations are possible, then interventions informed by beliefs around ngozi can likewise be woven into mental health initiatives. recognising and embracing these indigenous interpretations do not negate the importance of western methods; rather, they complement them by engaging local spiritual and cultural understandings of mental distress. empowering communities to take an active role, whether through spiritual frameworks like ngozi or culturally adapted counselling models, can increase the ownership, relevance, and long-term impact of mental health interventions. by integrating culturally adapted interventions such as the friendship bench alongside spiritual dimensions, the dandemutande framework demonstrates the potential for diverse indigenous perspectives to coexist with western mental health practices. policymakers can use it to design inclusive policies that acknowledge indigenous knowledge alongside biomedical perspectives, thereby promoting integrated mental health models. mental health professionals can be trained to understand and incorporate these cultural beliefs into their practice, enhancing their cultural competence. an essential aspect of this study is its grounding in decoloniality theory, as articulated by tuck and yang (2012). their perspectives were crucial in guiding research processes that not only explore but also respect and advocate for the epistemologies of the communities involved. applying a decolonial framework has significant implications for mental health research in zimbabwe. it challenges the dominance of western paradigms that often marginalise indigenous knowledge systems. by acknowledging ngozi, the study contributes to unsettling entrenched colonial narratives that disregard the cultural context of mental health. this approach aligns with the call for transformative practices that honour the lived experiences and traditions of non-western societies. methodologically, the use of autoethnographic approach in this study has been particularly liberating compared to other methodologies i have used before. autoethnography allowed me to reflect deeply and incorporate my own voice alongside those of the participants, fostering a richer, more nuanced understanding of ngozi and mental health. this method transcends the limitations of conventional research approaches that often distance the researcher from the subject matter. by embedding myself within the cultural and social fabric of the societies, i could thoroughly engage with the narratives and the subject of the influence of ngozi on mental health. considering these reflections and the proposed dandemutande framework, it becomes evident that addressing mental health challenges in zimbabwe necessitates a paradigm shift, one that honours indigenous knowledge systems while embracing effective contemporary interventions. it is important to understand cultural beliefs, respect those beliefs, and use those beliefs as appropriate to engage someone in treatment. by integrating ngozi into mental health practices, we can foster a more culturally acceptable approach. this integration not only empowers individuals and communities but also challenges colonial legacies that have long marginalised indigenous perspectives. dandemutande framework represents a promising approach in mental health interventions, offering a model that is both culturally respectful and clinically effective. by embracing indigenous beliefs alongside western practices, it paves the way for holistic mental healthcare in zimbabwe. conclusion grounded in decoloniality theory (tuck & yang 2012), this study challenges western-centric mental health models, advocating for the validation of indigenous epistemologies. by acknowledging and integrating ngozi, the article contributes to dismantling colonial narratives that overlook the cultural context of mental health. this study illustrates the complex relationship between non-western beliefs, culture, and mental health in zimbabwe. through a multilayered methodology, i explored narratives that highlight the significance of ngozi in relation to mental health challenges. the stories of the man at chapoto business centre, the tormented family haunted by the herdsman’s ngozi, and the chokuda case exemplify how spirituality, collective responsibility, and social justice are deeply intertwined with mental health. firstly, ngozi functions as a cultural mechanism enforcing communal accountability, aligning with ubuntu or unhu’s emphasis on interconnectedness and collective well-being. these narratives demonstrate how spiritual beliefs promote social harmony by discouraging actions that disrupt community integrity. secondly, the spiritual interpretations of mental health highlight the need for culturally sensitive approaches that integrate non-western understandings with western or modern mental health practices. acknowledging that mental distress is also viewed through a spiritual lens allows for interventions that are both respectful and effective within these cultural contexts. thirdly, the intersection of justice, reconciliation, and mental health highlights the necessity of aligning health and legal frameworks with traditional rituals. the chokuda case, for example, shows how integrating legal accountability with spiritual reconciliation fosters comprehensive healing and reinforces communal bonds. the proposed dandemutande [spiderweb] framework is a transformative model that positions the individual at its centre and weaving together diverse interventions: spiritual, medical, familial, and alternative therapies. this culturally sensitive approach respects and integrates both non-western and western practices, recognising that mental health is multifaceted and dynamic. by incorporating the ubuntu or unhu philosophy, the framework emphasises the communal nature of healing and the importance of social support networks, highlighting collective responsibility in promoting mental well-being. addressing mental health challenges in zimbabwe and similar other contexts, requires a paradigm shift that values indigenous knowledge systems while embracing contemporary interventions. the dandemutande framework offers a robust, culturally sensitive model that empowers individuals and communities, fosters holistic healing, and challenges colonial legacies. national leaders must champion this transformation, ensuring that culturally valued practices receive the recognition and support they deserve. through such commitment, mental health services can become more effective, and respectful of the cultural identities that shape our collective humanity. implementing the dandemutande framework has potential significant implications for mental health practice and policy. policymakers, mental health professionals, and communities must collaborate to decolonise existing laws, incorporate traditional practices, and design culturally compatible interventions. empowering communities through inclusive policies and education enhances the sustainability and efficacy of mental health initiatives. acknowledgements the author gratefully acknowledges the tembo mvura community for their hospitality and for generously sharing their personal stories. he is also thankful to his peers and the reviewers for their insightful comments. generative ai and ai-assisted technologies were used solely to improve the readability and language of the manuscript. competing interests the author reported that he received funding from british academy, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. the author serves as an editorial board member of this journal. o.m. has no other competing interests to declare. author’s contribution o.m. is the sole author of this research article. funding information many thanks to the british academy for awarding me the grant that supported this research. data availability the empirical data that support the findings of this study are available upon reasonable request. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the author is responsible for this article’s results, findings, and content. references addo, m.e., 2018, 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father admitted and the ngozi demanded five cows; (2) tonderai’s case (karanganda tv 2024). tonderai was reportedly assaulted by his stepmother after he allegedly damaged a television set while his father was away. the incident ultimately drove him to take his own life. some time after his death, tonderai’s ngozi manifested through his brother’s wife, recounting the events leading to his death and demanding rituals and compensation from his stepmother. the case was brought before chief mutasa, where the possessed wife narrated and reiterated the spirit’s demands. the stepmother admitted to the allegations. abstract introduction literature review research methods and design results discussion conclusion acknowledgements references about the author(s) armand bam stellenbosch business school, faculty of economics and management science, stellenbosch university, cape town, south africa citation bam, a., 2025, ‘fragmented care in lupus: patient experiences and insights’, african journal of disability 14(0), a1562. https://doi.org/10.4102/ajod.v14i0.1562 original research fragmented care in lupus: patient experiences and insights armand bam received: 20 aug. 2024; accepted: 15 dec. 2024; published: 28 jan. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: systemic lupus erythematosus (sle) is a complex autoimmune disease requiring interprofessional collaborative care because of its varied manifestations. this study explores the experiences of individuals living with sle regarding the communication and collaboration among their healthcare providers. objectives: this study aimed to explore the communication dynamics that shape treatment experiences and well-being in sle care. method: a qualitative multiple case study design was used, with thematic analysis of semi-structured interviews from six people living with sle. results: three primary themes emerged: the necessity of cohesive healthcare teams, the centrality of client-centred care and the significant challenges posed by fragmented healthcare systems. conclusion: the study highlights the need for integrated care models to enhance communication and coordination among healthcare providers. contribution: this research adds empirical insights into the communication dynamics within medical teams managing sle, advocating for client-centred and systemic improvements in care coordination. keywords: systemic lupus erythematosus; chronic illness management; multidisciplinary care; care fragmentation; patient-centred; interprofessional collaboration; team dynamics; integrated care. introduction systemic lupus erythematosus (sle) is a complex autoimmune disease that can present with a wide range of clinical manifestations, making its diagnosis and management challenging. this complexity requires not only precise diagnosis but also comprehensive multidisciplinary care to manage the disease effectively. despite advances in treatment and a deeper understanding of sle’s underlying mechanisms, people living with sle continue to experience high morbidity and mortality rates because of complications such as major organ failure, infections and cardiovascular disease. effective communication and coordination among healthcare providers are therefore critical for improved patient outcomes. however, while patient or client-centred care and shared decision-making (sdm) are increasingly recognised as essential in chronic disease management, there remains a significant gap in understanding the specific dynamics of communication within medical teams managing sle. this study seeks to address this gap by exploring the experiences of people with sle regarding the communication dynamics among the professionals who provide their care. by investigating the experiences of individuals living with sle regarding the communication and collaboration among their healthcare providers, the research aims to provide new insights into improving chronic disease management through enhanced interprofessional collaboration. literature review the management of sle has evolved significantly in recent years ushering in new treatments and an improved understanding of the disease’s underlying mechanisms (morand et al. 2023). globally, recommendations for sle management exist, emphasising an integrated approach to care to avoid fragmentation (bertsias et al. 2008). despite these advancements, patients with sle continue to face high morbidity and mortality rates, with major organ failure, infection and cardiovascular disease being significant challenges (katarzyna et al. 2023). the clinical heterogeneity of sle, with diverse phenotypes stemming from different molecular pathologies, contributes to the difficulties in standardising treatment approaches (morand et al. 2023). therefore, the effective communication and collaboration among healthcare providers from various specialities are essential to address the multifaceted needs of sle patients. patient-centred care and client-centred care share essential principles. both models prioritise the individual’s needs, autonomy and involvement in decision-making, focusing on responsive care that aligns with personal values (epstein & street 2011; mead & bower 2000). while ‘patient-centred care’ is more common in clinical contexts, emphasising medical outcomes, ‘client-centred care’ is often used in social work and mental health, reflecting the active role of individuals in shaping their care plans (kitson et al. 2013; morgan & yoder 2012). these models reflect a convergence in healthcare goals, with both frameworks promoting empowerment, autonomy and collaborative care, which is well suited to managing complex chronic conditions like lupus (fix et al. 2018; mccormack & mccance 2006). studies have highlighted the importance of patient and client-centred care and sdm in the management of chronic conditions like sle (politi et al. 2013; stiggelbout, pieterse & de haes 2015). however, there remains a paucity of research on the specific communication dynamics within medical teams caring for individuals living with sle. recognising the need to better understand this critical aspect of sle management, the present study aimed to explore the experiences and perspectives of people living with sle regarding the communication and collaboration among the medical professionals involved in their care (spath et al. 2011; thorne et al. 2004; villalobos et al. 2017). client-centred care and chronic illness management client-centred care is a fundamental principle in managing chronic illnesses (bauman, fardy & harris 2003; mirzaei et al. 2013). by focusing on the patient’s experience and involving them in decision-making processes, healthcare providers can ensure that care plans are tailored to the individual’s needs and preferences for better health outcomes (cornet et al. 2021; williams, ortiz & browne 2014). joughin et al. (2021) highlight the importance of feedback-seeking behaviour in enhancing client-centredness applicable to healthcare where feedback literacy can improve patient outcomes. they suggest that continuous feedback can help service providers adjust their strategies to better meet their client’s needs. this is supported by others who emphasise the role of feedback in the academic socialisation of students within healthcare, where continuous learning and adaptation are essential for delivering client-centred care (kim 2018; mohd noor et al. 2024; tripodi et al. 2021). shared decision-making is central to client-centred care. it involves patients and healthcare providers collaborating to make healthcare decisions that align with the patients’ values, preferences and lifestyle (légaré & witteman 2013; politi et al. 2013; stiggelbout et al. 2015). shared decision-making improves patient satisfaction, adherence to treatment and health outcomes (rosa et al. 2023; van der horst et al. 2023). it is particularly important for people living with sle because of the complexity and variability of the disease, which requires personalised treatment plans that consider their unique circumstances (duda-sikuła & kurpas 2023; montori et al. 2023). the use of patient-reported outcome measures (proms) is another important aspect of client-centred care. patient-reported outcome measures allow patients to provide direct feedback on their health status, treatment effectiveness and quality of life (adeghe, okolo & ojeyinka 2024). integrating proms into clinical practice improves patient-provider communication and enhances the overall quality of care where this information can be used to tailor care plans and ensure that they address the specific needs and concerns of the patient (makhni & hennekes 2023). cultural competence also plays a significant role in delivering client-centred care. healthcare providers must be aware of and sensitive to the cultural, social and economic factors that influence patients’ health beliefs and behaviours (taylan & weber 2023). cultural competence training can help healthcare providers understand and respect the diverse backgrounds of their patients, leading to more effective and personalised care. cultural competence is therefore essential for reducing health disparities and improving health outcomes for minority populations (reid et al. 2023; yalavarthi et al. 2023). in addition, the role of technology in enhancing client-centred care is increasingly being recognised (bertolazzi, quaglia & bongelli 2024). tools such as patient portals, mobile health apps and telehealth services can facilitate better communication and engagement between patients and healthcare providers. the use of telehealth services has been shown to improve patient satisfaction and access to care, particularly for those with chronic conditions like sle. these technologies enable patients to actively participate in their care, access their health information and communicate with their healthcare team from the convenience of their homes (bhatt & chakraborty 2023). the technologies place the patient at the centre enabling them to monitor their health, access resources and communicate with their healthcare providers, contributing to better management of their condition and improved health outcomes (howarth et al. 2018). another important aspect of client-centred care is the emphasis on holistic approaches that consider the physical, emotional and social dimensions of health. holistic care approaches, which integrate mental health support, social services and community resources, can significantly enhance the well-being of patients with chronic illnesses (cano et al. 2023). this approach aligns with the biopsychosocial model of health, which recognises that health outcomes are influenced by a combination of biological, psychological and social factors (hunt 2024). collaborative teams in healthcare the importance of collaboration to ensure that patients receive comprehensive and coordinated care is well documented (bauman et al. 2003; soukup et al. 2018). effective teamwork is therefore essential in managing chronic illnesses like sle. the role of multidisciplinary teams (mdts) (wagner 2000), interdisciplinary teams (idts) (boult & karm 2008) and interprofessional collaborative practice (ipcp) (hall 2005; keshmiri & barghi 2021; who 2010) in healthcare settings has been extensively studied. multidisciplinary teams enable the sharing of diverse perspectives when multiple disciplines come together contributing independently to a common problem, maintaining its methods and perspectives and addressing aspects of the problem within its boundaries (farina et al. 2022). interdisciplinary teams, on the other hand, seek to collaborate integrating knowledge and methods from their respective disciplines. this integration should result in a cohesive understanding or solution. the focus here is the synthesis and interaction across disciplinary boundaries, creating a unified approach to problem-solving (boult & karm 2008). moreover, ipcp involves professionals from varying fields using their distinct expertise to improve outcomes. this approach emphasises cooperation and teamwork with clear professional roles and boundaries where there is a collective contribution to a shared goal without the blending of professional identities (d’amour & oandasan 2005). while each approach is crucial for providing comprehensive care, the effectiveness of these teams often hinges on strong leadership to ensure alignment towards common goals. significantly, leadership styles that promote open communication, mutual respect and sdm have been shown to enhance team performance and patient care (salas, zajac & marlow 2018). the importance of leadership in fostering effective teamwork is essential for improved patient outcomes. the presence of strong leadership can help navigate the challenges of managing chronic illnesses, ensuring team members are aligned towards common goals (al-sawai 2013). this is particularly relevant in healthcare settings where the complexity of managing chronic illnesses requires coordinated efforts from various healthcare professionals. the role of training and development in enhancing teamwork cannot be overlooked. training programmes that focus on team-building skills, communication and conflict resolution can significantly improve team performance. according to gittell, seidner and wimbush (2010), relational coordination training, which emphasises the importance of communication and relationships among team members, can lead to improved patient outcomes and higher job satisfaction among healthcare professionals. this highlights the need for ongoing training and professional development to maintain high standards of teamwork in healthcare settings (hossny, gabra & hussien 2022). the impact of organisational culture on training and teamwork is another critical area of exploration where it has been shown that organisations that value collaboration and continuous learning can foster effective teamwork and improve patient outcomes (rosen et al. 2018). the integration of technology in teamwork is also a significant trend. tools like electronic health records (ehrs), telemedicine and collaborative platforms can enhance communication and coordination among team members, while the use of ehrs improved the efficiency of information sharing and decision-making in healthcare teams, leading to better patient outcomes (konnoth & scheffler 2020). similarly, telemedicine has been shown to facilitate remote collaboration and consultation, which is particularly beneficial in managing chronic conditions that require ongoing monitoring and intervention (bashshur et al. 2014; petruzzi & de benedittis 2016). healthcare complexity and managing systemic lupus erythematosus effective management of sle frequently necessitates involving professionals from various fields (abu bakar et al. 2020). coordinating care among multiple professionals, each with their own expertise and communication styles, can be challenging, especially within healthcare systems facing resource constraints and siloed departments. for example, a patient with sle may require input from a rheumatologist, nephrologist, dermatologist and psychiatrist, depending on their individual disease manifestations (bertsias et al. 2008). breakdowns in communication or coordination among these professionals can lead to fragmented care, delays in treatment and poorer patient outcomes (hossny et al. 2022). research suggests that integrated care models, characterised by effective communication and collaboration among healthcare providers, are associated with improved outcomes for patients with chronic illnesses, including sle (makhni & hennekes 2023). the multifaceted nature of sle presents considerable challenges for healthcare professionals, particularly within the context of complex and demanding work environments. the highly variable disease course of sle, coupled with the potential for multiple organ involvement, places a significant cognitive load on professionals (patel et al. 2018). they must process large amounts of information, often ambiguous and rapidly changing, to make timely and accurate diagnoses and treatment decisions. here, differentiating between a lupus flare and an infection, both of which can present with similar symptoms, requires careful clinical judgement and often necessitates further investigations (morand et al. 2023). this cognitive burden can be exacerbated by workplace stressors such as time pressures, high patient volumes and administrative burdens, potentially increasing the risk of burnout and medical errors (gandhi et al. 2023). moreover, studies have shown a correlation between physician burnout and decreased quality of care, including increased medical errors and reduced patient satisfaction (gandhi et al. 2023). south africa’s healthcare system has been shaped by its apartheid past and continues to be plagued by resource constraints (maphumulo & bhengu 2019). twenty years post-democracy, the annual per capita expenditure on health was estimated at $140 in the public sector staffed by 30% of the doctors and serving 84% of the national population, while the per capita spend in the private sector was estimated at $1400 where 70% of the doctors were serving 16% (8 million) of the population (mayosi & benatar 2014). the latest data shows that little has changed as 84% of the population remains uninsured and reliant on the public healthcare system (statistics south africa 2022). this poses significant challenges to the delivery and access to optimal client care, potentially exacerbating existing disparities in health outcomes for people with sle (harris et al. 2011). acknowledging scarcity in public healthcare systems compared to private is crucial for cost containment and fair allocation of resources. limited access to professionals, diagnostic testing and novel therapies, often compounded by long wait times for appointments and procedures, can delay diagnosis, hinder timely treatment initiation and negatively impact disease management for patients with sle (fradgley, paul & bryant 2015; johnston, wen & joynt maddox 2019). moreover, the trade-off between hospital efficiency and mortality rates, suggesting that pressure to reduce costs can sometimes compromise patient outcomes (ezeonwu 2018). insufficient staffing levels and high patient-to-provider ratios can also lead to rushed consultations, inadequate patient education and diminished continuity of care, ultimately affecting patient satisfaction and adherence to treatment plans. these capacity constraints influence patient allocation and impact the intensity of treatment received. addressing resource allocation disparities and ensuring adequate funding for sle care are therefore crucial to improving patient outcomes and reducing health inequities (cope et al. 2019). while each professional contributes unique expertise, a lack of coordinated communication can lead to conflicting treatment plans, medication errors and a disjointed patient experience (van der horst et al. 2023). to address this challenge, the integration of ehrs and other health information technology tools can play a pivotal role in facilitating data sharing, care coordination and decision making (bhatt & chakraborty 2023). furthermore, professionals may face challenges related to workplace culture and support systems. a lack of understanding or awareness of sle among colleagues can lead to inadequate support for professionals managing complex cases (morand et al. 2023). additionally, organisational factors such as limited access to continuing education opportunities or inflexible work schedules can hinder professionals’ ability to stay updated on the latest sle research and best practices (reid et al. 2023). addressing these workplace-related challenges is crucial to enhancing the capacity of healthcare professionals to provide high-quality care for individuals living with sle. research methods and design this overarching study employed a multiple case study design to explore the experiences of individuals living with sle in south africa. a multiple case study design allowed for in-depth exploration of a phenomenon across different contexts, providing robust and reliable evidence through the analysis of similarities and differences between cases. this approach was chosen to capture the complexities and nuances of the participants’ experiences in various employment settings (baxter & jack 2015). the unit of analysis was the individual living with sle, focusing on how they navigated treatment, faced challenges and coped with their condition (eisenhardt 1989). each case considered the nature of the participants’ treatment, disability and the social dynamics within their described medical settings. the study examined participants’ experiences of receiving medical treatment from the time of their sle diagnosis to the present, within the geographical context of south africa, which influences local healthcare systems, treatment access and societal attitudes towards chronic illness and disability. participants the study included six participants diagnosed with sle. participants were selected using purposive sampling to ensure they could provide detailed and relevant insights into the research question. each participant underwent two in-depth interviews, each lasting between 1 and 2 h, allowing for comprehensive data collection. all participants’ identities were protected with pseudonyms. case profiles ross was 41 years and was diagnosed at 28 years old. his diagnosis occurred during a period of temporary unemployment affecting his health insurance. he had sought care at a public hospital initially; but because of the extended waiting period and witnessing the death of a fellow patient in the corridors, he left without consulting a professional. subsequently, his diagnosis occurred in a private healthcare facility, and he has continued to make use of private healthcare services. carmen was a 57-year-old woman and was diagnosed at 37 years. her initial diagnosis was incidental because of an unrelated surgery. she subsequently enrolled in a lupus clinic in a public healthcare facility because of a lack of medical insurance and spent 14 years in the programme until she could afford private healthcare. julie was 53 years old and was diagnosed at the age of 28 years. she has always had access to healthcare insurance, which has allowed her to be consistently under the care of private healthcare professionals from a young age. esther was 35 years old and was diagnosed at 21 years of age. she considered herself privileged always having had access to private healthcare. esther acknowledged that this access to medical insurance was essential to afford the best possible treatment. erica was 43 years old and received a diagnosis at the age of 36 years. she has always made use of private healthcare. keisha was 38 years old and was diagnosed at the age of 23 years and has only been within the public healthcare system. because of extensive periods of unemployment and low paying jobs, she has not been able to afford healthcare insurance. data collection semi-structured interviews, guided by an interview schedule, were used to collect data. this approach allowed for flexibility in probing for deeper understanding while maintaining consistency across interviews (rabionet 2011). interviews were audio recorded and then transcribed verbatim for accuracy in data analysis. field notes were also captured of the non-verbal cues for additional contextual information that would not be captured through the transcription process (jack 2008). data analysis data were analysed using a thematic analysis approach following braun and clarke’s (2006) six-step method. additionally, cross-case synthesis was employed to analyse data across multiple cases, identifying patterns and themes that emerged within and between cases (jack 2008; yin 2013). the steps included familiarisation with the data, where transcripts were read multiple times to become deeply familiar with the content. interesting features of the data were coded systematically across the entire data set. codes were collated into potential sub-themes, gathering all data relevant to each sub-theme. sub-themes were then grouped into the overarching themes that were then checked to ensure they worked in relation to the coded extracts and the entire data set (hsieh & shannon 2005). each theme was refined, and clear definitions and names were developed and illustrated in table 1: themes, sub-themes and codes. finally, a report was produced, providing vivid examples and relating back to the research question and literature. data were managed using atlas.ti software, which facilitated the coding and organisation of data, ensuring a systematic approach to theme development and cross-case analysis (yin 2013). table 1: themes, sub-themes and codes. ethical considerations the study adhered to all ethical guidelines as set out by the social, behavioural, and education research ethics committee (rec: sbe). ethical clearance was obtained (ethical clearance number: 24082), ensuring that all procedures met the necessary ethical standards. key ethical considerations included informed consent, where participants were provided with an information letter and an informed consent form. they were given the opportunity to ask questions and withdraw from the study at any time without penalty. participants’ identities were anonymised in all transcripts and reports to protect their privacy, with data stored securely and accessible only to the research team (shaw 2003) a non-disclosure agreement (nda) was signed by all research team members to ensure confidentiality (yin 2013). participants were also informed about the availability of counselling services if they experienced distress during the interviews. by adhering to these ethical principles, the study ensured that participants’ rights and well-being were prioritised throughout the research process. results the management of sle requires a comprehensive approach that addresses the multifaceted nature of the disease. the findings of this study share three overarching themes identified through the analysis of participant interviews: collaborative care, patient centredness, and fragmentation challenges. the findings reveal the importance of a cohesive team of healthcare professionals, the necessity of centring care around participant experiences and the complexities within the healthcare system that create barriers to effective sle management. in examining these themes, the findings highlight critical elements that can contribute to improving the quality of care for individuals living with sle. collaborative care the participants consistently recognised the pivotal role of service providers in their treatment regimen considering each provider as part of their team. all participants felt that it was key that professionals had an aptitude for operating in interprofessional networks. central to this collaborative relationship was the participant as patient serving as the focal point around which professionals were expected to coalesce. for participants, these professionals were directly connected to each other because of their efforts to treat sle patients. this necessitated the cultivation of robust working relationships to optimise treatment outcomes for participants. subsequently, participants employed multifaceted strategies to establish and sustain their medical teams. they felt that building a trusted support network and leveraging others’ professional expertise were more than an investment in their health; it enhanced their prospects and quality of life. moreover, this approach was likened to management within complex organisational structures. significantly, all participants noted that forming these teams was a gradual process, requiring careful consideration of the diverse impacts of sle, including its physical and psychological effects on individuals: ‘the most successful people and conglomerates have people around them, a network. it’s a relationship, it’s a network and there’s elements of how you scale your network to be able to monetise it in a career, it’s similar with the disease. i’ve known i need people around me. i don’t have all the answers.’ (ross, participant 1, male, 41 years) participants described a ‘required sensibility’ that was necessary from professionals and essential for the roles played by others in their healthcare journey. professionals therefore needed to be receptive to a patient’s perspective as well as their professional peers. significantly, the desire to be ‘heard’ and for professionals to be responsive rather than reactive was evident. moreover, fostering opportunities for collective decision-making was raised and felt to contribute to reducing the fears and anxieties of patients. where professionals accommodated this approach, participants experienced a heightened sense of stability, control and agency in the management of the disease: ‘my nephrologist – we know each other long. we’ve been through a few journeys. he’s one of a kind and brought stability – he is part of my team. if i make a decision, i talk to him. i will talk to him at least once a month. we’re on first name basis. if i message him now, he’ll reply. it’s very rare. he can put up with me and he’s taught to manage my disease. i’m fine for now, but there’s always that thing in the back of your mind, when is this thing going to come back.’ (ross, participant 1, male, 41 years) selectivity in accepting care from medical professionals was crucial and discerned in consultation by the patient and their identified primary practitioner. this consultation invariably determined others’ entry into the care team. there was consensus from participants that a supportive and knowledgeable medical practitioner would positively affect a patient’s quality of care and their experience of the disease: ‘i messaged my rheumatologist and i said to her, ‘i’m going to be honest with you, he was terrible’. and she immediately said to me, ‘then you’re not going back to him ever again’. you don’t need that. there are other doctors that are great, if that was your experience, he’s a brilliant doctor, but i’m not going to let him treat my patients and be dismissive.’ (esther, participant 4, female, 35 years) treatment outcomes were improved and observable when medical practitioners had knowledge and working experience in managing lupus. these experienced professionals were characterised through a consistency in their messaging, the delivery of information with empathy and acknowledged the individuality in the experience of sle: ‘as a lupus person there are times you come into the er and we’d rather wait to the next morning to phone our doctor to say, ‘oh my gosh, i need to come in’. no offence to the er doctor – it’s not their expertise. so, they tend to do all the tests they can do during that night and put on a drip and give you pain medication. i might as well wait for the next morning for my own doctor.’ (julie, participant 3, female, 53 years) the presence of these traits instilled greater confidence and trust between patient and professional and enhanced the efficacy of their treatment regimens. professionals were expected to understand the interconnectedness of clinical proficiency, the desired interpersonal skills and their roles in improving health outcomes and patient satisfaction: ‘if i say to her, i have extreme pain or my chest is sore, she’s like, okay we know this is how you present when you start becoming ill so let’s quickly get you on a drip for a weekend and you’re good to go. so, it’s having that team [which is] really important. it’s very hard to find the right doctors. a lot of people think they know something, but i don’t even bother going to a gp, i’m sorry. they can look after children and old people with flu. i don’t even waste my time to be honest.’ (esther, participant 4, female, 35 years) geographic proximity improved transferring professional input and resulted in more comprehensive provision of care services. working in the same hospital proved advantageous as it fostered incidental interactions among healthcare professionals reducing the time between the sharing of patient information and integration of services. participants noted that proximity not only facilitated professional collaboration but also cultivated more meaningful relationships between patients and professionals: ‘i was diagnosed in abc hospital where i had a physician, dr x, and my urologist, dr y and when i had the tia’s dr z the neurologist was there. it was good when all of them were in one hospital. however, dr x moved [to another province] to a university then it became more difficult then dr z moved to [another suburb]. dr a i have to see her in another suburb and hospital and my urologist is in the urology hospital [city centre].’ erica, participant 5, female, 43 (years) because of the complexities associated with sle, participants expected a commitment to collective problem solving. in this context, collaboration was essential to improve the quality of care. participants believed the quality of care was best achieved through case discussions aimed at consensus building between professionals followed by direct patient feedback. for participants, experiencing the consensus building was instrumental in enhancing their personal understanding of sle: ‘dr a is not in the x hospital he opened up his own space. thursdays is a roundtable, it’s show and tell, “right, this is what’s happening with julie” and everybody gives input. dr c will come back to me and say, “listen, this is what this one’s seen this and that one’s seen that”. it was fantastic when everybody was at x hospital, they’d bump into each other [daily]. i’ve made it work cc’ing everybody for any blood test or scans.’ (julie, participant 3, female, 53 years) although participants acknowledged the benefits of proximity and coordinated care, they were realistic with their expectations outside of private practice settings. despite expertise available in state hospitals, participants felt they needed to temper their expectations concerning the quality of care available because of subpar administration and resource constraints that affected how professionals could provide care. julie acknowledged the constant need to rebuild relationships with professionals in public hospitals and reshare information about her condition: ‘if you go to a state [hospital] the problem is not just being able to see the same doctor. i need to build a relationship with my doctors and in state i’m not going to have that relationship.’ (julie, participant 3, female, 53 years) in other instances, carmen expressed her sadness of having to leave a public healthcare programme that she was accustomed to because of administrative challenges and more consistent access to her required medication: ‘the admin at government hospitals, i think god has specifically placed them there to teach us patience. i have stopped going because the medication, they have access to it’s not helping me anymore. they explained it would be better to be under [dr c] because he’s got access other medications. it was actually a sad day.’ (carmen, participant 2, female, 57 years) while administrative issues affected participants’ experiences, keisha acknowledged that because of the limited number of professionals available in public healthcare settings, collaboration among professionals would be limited. she considered the resource deficiency to affect her health outcomes: ‘if you’re one doctor, with three staff members with a patient turnover of 100 within an hour, you can only do that much. if you don’t have the medication and the equipment to treat the patient, you can only do that much. they do an excellent job, but they don’t always have what they need. i’ve got immense respect for people in the public sector, but i don’t want to be a patient because they don’t have the means to do what they need to do.’ (keisha, participant 6, female, 38 years) advocacy and educating others was perceived as part of their personal role as a team member. through these efforts, they could actively improve the understanding and promote the need for better care for patients with less visible chronic diseases. participants became increasingly aware of the systemic challenges within healthcare and took on the role of educator to promote the awareness of their experiences: ‘i was admitted to a [government hospital] for an infection in my bladder and the nurses said, “okay, doctor has given you strong pain medication and antibiotics, but you look very well. please explain this?” she couldn’t understand why i have a catheter and seem okay. i put up fliers and asked for 10 minutes when all the nurses get together and explained lupus is an autoimmune disease. the nurses took it to the hospital manager, and she then said, “this is actually so nice, let’s send it to all the staff.”’ erica, participant 5, female, 43 (years) patient centredness effective strategies for managing chronic illnesses hinged on placing the patient at its centre, ensuring accessibility, convenience and regularity of contact with healthcare providers who were empathetic. here, technology-mediated communication emerged as a valuable asset in the healthcare process. utilising platforms like whatsapp and video calls facilitated remote medical assistance, particularly beneficial to participants experiencing mobility barriers. significantly, participants highlighted that not only did this direct access offer emotional and psychological support but also contributed to an enhanced healthcare experience centring them instead of their treatment regimes: ‘my therapist lives just and works from home or we’re online. if i need a face to face, i can go to coffee with her at her home. i can see her wherever. i would have whatsapp calls, video calls … it’s easy for me not to leave home … you need that other person to speak to [who] also plays a huge role in my life.’ (julie, participant 3, female, 53 years) the clarity with which information was delivered was also crucial for patients to comprehend the intricacies of the disease and the trajectory of their treatment. participants called for communication balanced with a mix of transparency, empathy and optimism between doctor and patient when explaining the gravity of the impact of sle and determining a course of action: ‘not my gp. i came to know more about lupus from the rheumatologist at the state hospital. he takes time to explain everything and put me on new medication. he specifically told me not to google the side effects with new medication because then i would probably not drink it.’ (carmen, participant 2, female, 57 years) when clarity and transparency were evident, participants were better equipped to moderate their expectations and manage the anxieties associated with their condition. communicating in this truthful manner created a supportive environment and avoided the reliance on other resources and information sources, which deterred them from receiving treatment: ‘it was awful but he explained it to me very well. “this is going to be a long journey, and a few people go into remission. don’t get your hopes up, right now with going to go into remission. don’t listen to people that you can be healed. just realise this is where you’re going.”’ (julie, participant 3, female, 53 years) participants highlighted that sle typically manifests gradually and exhibits characteristic symptoms, which required proactive management and the meticulous monitoring of symptoms over prolonged periods: ‘we get to know our bodies so i will tell them, week one, “something’s brewing” by week 3, i say, “right, now i’m coming, i need to see you, and then i have an infection and whatever. so, it’s important to have that team and i advise people to make sure they have a team of doctors that actually know each other.’ (julie, participant 3, female, 53 years) as time progressed, all participants experienced a deepening self-awareness and understanding of their symptoms and the severity. consequently, health literacy and patient autonomy emerged as pivotal components in the ideal client-centred approach to lupus management: ‘i had an idea about it. i didn’t really understand what was in store for me.’ (esther, participant 4, female, 35 years) ‘there are patients still afraid, when they hear doctor, they feel they can’t question. i’m past that. i will question and you need to give me answers that i need.’ (julie, participant 3, female, 53 years) those who actively pursued knowledge felt empowered to challenge the hierarchical practitioner-patient dynamic to make more informed decisions about their care. for participants hospitalised regularly, their confidence in navigating healthcare resources improved with the increasing familiarity. this was further developed as professionals gained insights into their patients’ needs and shared their valuable insights into the healthcare system for their patients to benefit: ‘i know my symptoms. i’m a dictator when sick. i decide when i’m going to hospital, nobody else tells me. i know if i can heal at home or the hospital. i know how to work the medical system…use the hospital element of your medical [aid] and go in for three days, it’s like a hotel essentially for me. the relationship that i had with my doctor helped.’ (ross, participant 1, male, 41 years) increased efforts to navigate the system during critical times heightened their vulnerability, given their compromised immune system. the coronavirus disease 2019 (covid-19) pandemic disrupted specialised care significantly amplifying the risks of poor health outcomes and necessitated persevering under these conditions: ‘covid hit. my nephrologist, an elderly professor, did not want to see any patients or admit anyone to hospital. it’s like you’re safer out of hospital. no one could figure out what to do with me. luckily i found a rheumatologist who eventually figured out after three months and started me on medication. she’s my primary doctor now.’ (esther, participant 4, female, 35 years) resilience emerged prominently in all participants’ narratives in relation to engaging with the healthcare system. for most participants, the simplest way to overcome this was to enter into private healthcare at a substantial personal cost. carmen and julie expressed a similar concern: ‘when you are at government hospitals, the months you don’t have to see a doctor you still have to collect your medication. that means another day, to sit at a clinic. privately i can go on a saturday and my script which was six months, i collect it from the pharmacy. i’m not going to take off work as under the government treatment. at a private doctor it’s easier because it doesn’t influence your work except if you fall ill, yes.’ (carmen, participant 2, female, 57 years) julie in turn suggested that the direct and indirect burden of sle rose in such circumstances. resilience therefore was a higher priority when receiving care through state hospitals compared to private facilities. the necessity for financial, emotional and physical resilience particularly in navigating the availability (or lack thereof) of essential medications rose for all participants: ‘with state hospitals, if they start you on [medication], they have to make sure they have that product in stock for the next visit … the state runs up a bill and pharmaceutical companies get fed up and go, “right, enough now. pay your bill and then we will give you meds.” then someone comes and their biologics is not available. can’t have that – it has to be available.’ (julie, participant 3, female, 53 years) fragmentation challenge participants stressed the importance of coordinated care provided by cohesive healthcare teams. they sought assurance that professionals shared a unified understanding of their diagnosis and treatment: ‘i’ve got a specialist physician then a general practitioner then a psychologist and a psychiatrist. i struggle most with [getting] all of my medical professionals to communicate with one another.’ (keisha, participant 6, female, 38 years) all participants advocated for a collaborative approach in formulating a personalised treatment plan tailored to their individual needs. the presence of interprofessional collaboration facilitated more comprehensive care delivery experiences, while participants identified timing issues between tests, diagnosis, feedback and treatment as major impediments. participants emphasised the significance of reducing delays impacting their quality of life, particularly when professionals were unaware of conflicting treatment outcomes especially the interaction between medications prescribed for different conditions: ‘the problem when i have a urological problem like my stents, then dr a would say, they have to remove the stents because that’s what’s causing the infection and then dr b will tell me they cannot remove the stents because without the stents you’re not going to drain, then your kidneys are going to be zero. so that’s a bigger problem to get them to talk to each other.’ (erica, participant 5, female, 43 years) conflicting medical care approaches surfaced when professionals lacked direct communication with each other. in response, participants took the initiative in directing and actively established channels for sharing information specifically to eliminate the communication barriers between professionals. however, this was time consuming and added to the burden and fatigue experienced by participants, highlighting the emotional and physical toll of managing such a disease. in navigating these systemic challenges, participants wanted more centralised care coordination and a designated practitioner responsible for consolidating medical opinions and reports. this would mitigate contradictory treatment plans, alleviate the burden on patients and enhance overall care coordination and outcomes: ‘trust me, i make sure that they speak to each other. when i go to [pathology laboratory], they giggle because they know, “oh, we need to cc this doctor, that doctor” and then they all get it because nowadays they get it on their phones, and they have a quick look, and everybody is [then] well informed as to what’s going on julie.’ (julie, participant 3, female, 53 years) participants also disclosed that the difficulty in having to coordinate their care among healthcare professionals reflected poorly on their interprofessional communication and ultimately impacted their treatment efficacy further ‘burdening’ them. they frequently encountered systemic issues when there was no established protocol for information sharing among professionals treating them leaving them to bridge this gap. addressing issues such as fragmentation, conflicting opinions, resource constraints and systemic inefficiencies compelled participants to take on this mediating role in managing their care: ‘normally, a bit of time goes into make sure doctors have the latest results and diagnosis done by other doctors, and then it’s not being communicated from the doctors to one another. treatment interacts with one another, and they need to be aware of it. but they don’t communicate as much as i would like them to communicate with one another.’ (keisha, participant 6, female, 38 years) continuity and consistency of care were also crucial for effectively managing lupus. participants recognised that they could influence both factors by actively managing the flow of information and communication regarding their treatment: ‘i’ve always had good fortune to speak to doctors that have been prepared to listen, except during covid with a shortage of doctors, and hospitals on lockdown. that was bad, because it was doctors that weren’t my usual team, and did not know how to handle a lupus patient.’ (esther, participant 4, female, 35 years) participants felt that the attunement to their own bodies contributed to developing their self-sufficiency and wanting control over their care-related information. however, this inclination often stemmed from the frustration of having to educate some healthcare professionals because of the rarity of their condition. additionally, participants felt preparation and adaptability by professionals were critical for improving their treatment experiences. participants felt that the unpredictable nature of the illness, along with the associated uncertainties added complexity to their treatment plans needing flexibility: ‘after three weeks in hospital, i was tired and couldn’t bother to explain and said, “okay, so dr a you are typing up a report so i can give it to my other two doctors and dr b give me a report on all medicine and things you think i need to take” and i took it to dr c – now my main doctor. so, between the two she gets reports from them, so she knows why they’re doing certain things.’ (erica, participant 5, female, 43 years) for all participants, the management of sle hinged on the ability to foster collaborative care teams, ensure client-centred approaches and navigate the challenges of healthcare fragmentation. participants benefitted significantly from coordinated care where professionals communicate effectively and work together to create personalised treatment plans. placing the patient at the centre of care, utilising technology for better communication and ensuring that patients are well informed and empowered are crucial strategies. addressing the systemic issues of fragmentation and conflicting medical opinions required improved coordination and a more centralised approach to care management. by focusing on these areas, the overall healthcare experience and outcomes for individuals with lupus can be enhanced, ensuring they receive the comprehensive and empathetic care they need. discussion the findings of this study provide insight into the management of sle, particularly regarding the critical roles of collaborative care, patient centredness and the challenges posed by healthcare fragmentation. these findings align with existing literature but also contribute new perspectives that are relevant to the ongoing research and discourse on chronic illness management. collaborative care the study highlights the importance of cohesive healthcare teams in effectively managing sle. participants repeatedly emphasised the necessity of having a trusted network of healthcare providers who are knowledgeable and experienced in the complexities of sle and capable of functioning within interprofessional networks. this finding is consistent with the literature on ipcp advocating for cohesiveness from professionals and acknowledging the importance of patients’ involvement in determining their care (d’amour & oandasan 2005). moreover, this study highlights the challenges within public healthcare where resource constraints impact patient outcomes (wranik et al. 2019) and the importance of proximity or working in shared spaces (dahl & crawford 2018; sangaleti et al. 2017). moreover, the applicability to mdts and idts managing chronic conditions is also evident (farina et al. 2022; soukup et al. 2018). the study adds to this body of knowledge by demonstrating how the lack of collaboration can lead to fragmented care, delays in treatment and suboptimal patient outcomes. patient-centredness the emphasis on client-centred care in the study aligns with the broader movement towards sdm and the integration of proms in chronic disease management (légaré & witteman 2013; makhni & hennekes 2023). the participants in this study valued clear, empathetic communication from their healthcare providers and appreciated the use of technology, such as whatsapp and video calls, which facilitated remote consultations and provided emotional support. these findings suggest that when patients are placed at the centre of their care, with consistent and empathetic communication, they are more likely to be engaged in their treatment plans and experience better health outcomes. this is particularly important in the context of sle, where the variability of the disease requires personalised care plans that are responsive to the patient’s unique needs. fragmentation challenges one of the most striking findings of this study is the extent to which fragmentation within the healthcare system impacts the care of individuals with sle. participants frequently encountered delays, conflicting medical opinions and the burden of coordinating their care, all of which detracted from their overall healthcare experience. this issue of fragmentation is well documented in the literature, where it is associated with poorer health outcomes (hossny et al. 2022). this study contributes to the discourse through providing specific examples of how fragmentation manifests in the care of sle patients and by highlighting the need for more integrated care models that can reduce these barriers. by addressing these systemic issues, healthcare systems can improve the quality of care for sle patients, ensuring that they receive timely, coordinated and effective treatment. overall, the findings’ emphasis on collaborative care and patient-centredness aligns with practices in the field, while the identification of fragmentation challenges adds a critical dimension to the discourse. these findings not only confirm existing theories but also provide new insights that can inform future research and practice in the management of sle and other complex chronic conditions. conclusion this study highlights the importance of a collaborative, client-centred approach to managing sle while also emphasising the challenges posed by fragmentation within the healthcare system. by fostering strong interprofessional networks, utilising technology to enhance patient engagement and improving care coordination, healthcare providers can significantly improve the quality of care for individuals living with sle. these findings have important implications for both clinical practice and future research, particularly in the development of integrated care models that promote collaboration among medical specialities and can better meet the needs of patients with complex chronic conditions. hospitals and clinics should invest in the implementation of advanced ehrs to enhance communication and reduce care fragmentation. additionally, investing in training programmes that strengthen teamwork, communication and leadership skills within multidisciplinary teams is essential for improving patient outcomes. with respect to the technology industry, it has a significant opportunity to innovate in telehealth platforms and mobile health applications. these technologies can bridge communication gaps and provide chronically ill patients with accessible, real-time support from their healthcare teams. health tech companies should focus more intently on developing user-friendly tools that empower patients in managing their care while facilitating better coordination among healthcare professionals. there are considerable opportunities for the pharmaceutical sector to play a more crucial role in ensuring the availability of medications for chronic conditions like sle within the public healthcare system. streamlining the supply chain and collaborating with healthcare providers to maintain consistent access to essential drugs are vital. additionally, pharmaceutical companies should focus on educating both patients and providers about the latest treatments, emphasising a client-centred approach to care. policymakers should also incorporate these findings into healthcare policies, particularly in resource allocation and funding for chronic disease management. strengthening public healthcare systems to support integrated care models is crucial. policies that encourage ongoing education for healthcare providers and foster interdisciplinary collaboration will improve patient outcomes and reduce disparities. the study’s limitations include a relatively small, purposive sample, which, while providing in-depth insights, may not capture the full range of experiences among individuals with sle in diverse healthcare settings. additionally, this research focuses on patient narratives within a specific geographic and systemic context, limiting the generalisability of findings to other healthcare systems or regions with different structural and cultural dynamics. future research could expand by incorporating larger, more varied samples and investigating the impact of specific interprofessional communication practices on chronic illness management outcomes. comparative studies between different healthcare systems could also shed light on structural factors that promote or hinder effective collaboration in chronic disease management, offering a broader understanding of best practices for interprofessional care. acknowledgements competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution a.b. has conceptualised the article, written the original draft, done the analysis and presentation of findings and discussion and conclusion as the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability because of data containing potentially identifying or sensitive participant information, requests for further disclosure can be directed to the stellenbosch business school departmental 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michel clasquin-johnson department of religious studies and arabic, university of south africa, south africa citation clasquin-johnson, m.g. & clasquin-johnson, m., 2018 ‘“how deep are your pockets?” autoethnographic reflections on the cost of raising a child with autism’, african journal of disability 7(0), a356. https://doi.org/10.4102/ajod.v7i0.356 original research ‘how deep are your pockets?’ autoethnographic reflections on the cost of raising a child with autism mary g. clasquin-johnson, michel clasquin-johnson received: 13 dec. 2016; accepted: 07 nov. 2017; published: 27 mar. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in this article, we reflected on our experience of the cost of parenting a child with autism, including our ongoing search for educational and therapeutic intervention. objectives: we aimed to give an academic insight into the state of autism education and care in south africa as seen by us, with special attention to its cost and sustainability. methods: using evocative autoethnography as storied scholarship together with critical autism studies, we reflected on stories of the past 5 years since our son’s diagnosis. results: our experiences agree with international studies that establish autism as the most expensive disability. in addition to the high costs of diagnosis, existing intervention and support approaches are unaffordable for the majority of south africans. we recommend that teachers should be trained to participate in early screening and diagnosis, as well as co-therapists, to strengthen the implementation of inclusive education. conclusion: the kind of autism intervention currently offered in south africa is financially and socially unsustainable. instead of positioning autism as an individual or family dilemma, it should be addressed as an educational and societal issue. future research should explore cost-effective options for a developing country context, while promoting best practice within inclusive settings. introduction in this article, we reflect on our lived experience of parenting a child with autism, specifically our search for educational and therapeutic intervention. we share stories of critical moments in our journey using qualitative inquiry and evocative autoethnography. each could be an article in its own right, and may yet become that, but here we focus on the financial aspect. drawing on a critical autism studies perspective (davidson & orsini 2013), we reflect on the cost of raising our child. we soon discovered that autism is positioned as the most expensive disability for which parents need impossibly deep pockets. this is known to be true internationally (cidav et al. 2013; dillenburger, mckerr & jordan 2014; fletcher, markoulakis & bryden 2012; horlin et al. 2014; lin 2014), but what is the case in south africa? problem statement and goals of the study when a child manifests developmental delays, parents spend time, energy and financial resources to obtain a diagnosis (fletcher et al. 2012; gibson 2014; mccollum 2012). following our son’s diagnosis of being on the autism spectrum, we were confronted with the dilemma of whether to enrol our son in a mainstream or special school. in our experience, no clear guidelines accompany this process. autism is regarded as the most expensive disability (byford et al. 2016; hall, wright & mills 2016). scholars such as dillenburger et al. (2014:135) have illustrated that the costs of rearing a child with autism in the usa is three times the cost of rearing a typically developing child. moreover, lokhandwala, khanna and west-strum (2012) have found that the lifetime cost of a single person with autism is $3.2 million. considering that the average lifetime earning of a us citizen with a college degree is estimated at $2.8 million (carnevale, rose & cheah 2011), this gives us an indication that even in a wealthy, developed country, the costs involved are staggering. how much worse can it be in a developing country? in addition, although the efficacy of early intervention in autism is uncertain (warren et al. 2011), this is what south africans should focus on, that is, to make it affordable and accessible to south africans living with autism. autism is framed as a complex, lifelong yet invisible disability (hoogsteen & woodgate 2013:136; leblanc, richardson & burns 2009:166) accompanied by neurological and developmental abnormalities (lokhandwala et al. 2012:95; wang et al. 2012:1). consequently, parents are told that their children require costly long-term intensive remediation, therapy and biomedical intervention (dillenburger et al. 2014). in reality, few south african families can afford this because the typical cost of school fees and therapy exceeds the average household income. background statement we are both academics with phds. we are not typical parents because we can assess teachers’ knowledge and skills, analyse assessment reports and ask questions. we are highly educated and privileged, and one might expect that we would be better prepared than most to deal with the experience of rearing a child with special needs. this has not proven to be the case. the cost of parenting a child with autism has proven to be overwhelming. despite our relative privilege, we too have experienced financial strain and uncertainty. parents of children with autism constitute a vulnerable community (lin 2014:243) because we will do anything to give our children the support they require, especially as we realise that they will outlive us, and need to do so independently. studies reveal that parents of children with autism experience significant stress because of the need for closer parental supervision, the more dependent relationship with their children and more intense worry about the future (benson et al. 2011:67, 76; pepperell, paynter & gilmore 2016:5). we employ autoethnography as ‘storied scholarship’ (boylorn & orbe 2014:13) to capture the essence of our experience and invite the readers into our thoughts, following the example of barua (2008). literature review autism spectrum disorder (asd) is the most expensive disability (byford et al. 2016; cimera & burgess 2011; hall et al. 2016). this is attributable to the cost of intensive early intervention, that is, the hourly approved medical aid rate of r440 charged for therapy and the need for small classes because of the weighting of 6 given to these learners (one learner with autism equals six ‘neurotypical’ learners). intervention is concentrated in childhood, with the cost of care being the highest during adulthood (cidav et al. 2013:924). diagnosis typically happens at 3–5 years, followed by intensive therapy, which declines during the teenage years and then comes a sharp increase in adult residential and medical care (lin 2014:247; shimabukuro, grosse & rice 2008:546). families are confronted with long-term economic stress, which is a social issue (chasson, harris & neely 2007:402; lokhandwala et al. 2012:94; wang et al. 2012:2, 6). research method and design this qualitative inquiry combines evocative autoethnography (boylorn & orbe 2014; pace 2012:7) and self-reflexivity (anderson 2006:374, humphreys 2005:841) to reflect our insider perspective by using ourselves as the research subjects (ellis 2014:61). we reflect on our experiences (morella 2008; prince 2013:319) of the past 6 years and connect it to existing scholarship (britton 2013:iv). we employ autoethnography as a scientific method to unpack our epistemology (ellis 2014:50), advance social justice (morella, 2008) and provide an insight into the cost of autism diagnosis, education and support in south africa. we also hope that it will be of benefit to parents following a similar process (hannekom 2012:iii), in accordance with hemelsoet’s (2014:227) assertion that social scientists should ‘take up their responsibility by turning their scientific knowledge into a vivid leverage of discussion, action and change in the public arena’. our discussion below will therefore build on our personal reflection, using what humphreys (2005:842) calls ‘vignettes’. these were separately constructed to reflect our innermost thoughts and were only brought together in a single document afterwards. the dominant ‘medical model’ of disability pathologises disability as an individual problem for which biomedical intervention is required (cidav et al. 2013; leigh et al. 2016; wang et al. 2012). it persists despite policy rhetoric following the ‘social model’, which promotes social acceptance and support (department of education 2001). this official new direction emphasises that it is not primarily the child who must change rather the society that must accommodate the child. our perspective follows that of critical autism studies, which calls for a strategic combination of these extremes according to the support needs of the individual (davidson & orsini 2013). ethical considerations ethical clearance for this report was sought and obtained from the ethics committee at the college of education at the university of south africa (ref: 2016/08/17/1130536/09/mc). the names of the institutions, organisations or individuals are not mentioned in relation to our experiences. discussion story 1: diagnosis day (d-day) soon after our son’s first birthday, it was evident that he was not meeting the universal milestones. physically he progressed steadily, but his vocal development was slow. although we struggled to accept it, we commenced speech therapy as a speech therapist was readily available at his first preschool. we hoped that he would simply catch up. we too took refuge in ‘boys start talking a little later’ and ‘einstein didn’t start talking until he was six’. given that author 1 had been active in the field of early childhood education for 20 years and that author 2’s second major is in psychology, we became increasingly aware of our son’s developmental delays and eventually could no longer deny the reality of the situation. in 2011, soon after his third birthday, our son was diagnosed as being ‘on the autism spectrum’. this was the outcome of a lengthy and costly process: waiting 5 months for an initial appointment with a paediatric neurologist (at an initial cost, in 2011, of r2600), returning for a follow-up assessment 6 months later (at a cost of r700 – these rates have nearly doubled since then) and receiving a verbal diagnosis of autism but a written diagnosis that only called for ‘intensive speech therapy’ without actually mentioning the autism spectrum. indeed, the written diagnosis was produced only after we insisted and is actually a form that allowed us to claim back some of our expenses from income tax (sars 2016). at the end of the second visit, the paediatric neurologist advised us to come back again after a further 6 months, with a clear suggestion that this would be the long-term pattern. author 2 asked, ‘why? what will she tell us? “yes, he still has autism?” so what? all we need is the sars form’. we have not been back. instead, we redirected our resources and intensified our son’s therapy that had commenced a year earlier. hannekom (2012), who undertook a south african autoethnographic study on her experience of searching for an educational niche for her son, noted that: we always knew that he was different, but it took three and a half years of countless visits to medical professionals before he was finally diagnosed with pervasive developmental delay – not otherwise specified (pdd-nos), an autism spectrum disorder (asd). our son now had a label, but still no route map. (p. xii) our experience confirms hannekom’s observation that diagnosis is not accompanied by practical advice on intervention. although hannekom (2012) did not focus on the cost factor, one could reasonably assume that ‘countless visits to medical professionals’ would be a costly undertaking. the moment of diagnosis of autism has been described as a turning point in one’s life (ellis 2014:64). so it would prove to be for us. author 1: ‘i suspected autism. my sister hinted subtly and un-subtly and still i did not want to know. i really should have known. but i wanted it to be something else, something easier. now i feel guilty and inadequate. what do i know about autism? my training has not prepared me for this. i have only worked with neurotypical children. yet, we are not the first family to experience this. we will handle it. we will learn whatever we need to. there’s no need to panic.’ author 2: ‘i have never been diagnosed as being on the spectrum. when i was my son’s age, such a diagnosis did not even exist. nevertheless all indications are that if it had been available, i would have been diagnosed with asperger’s syndrome. when my son was diagnosed, it was almost a relief. “i know this. i understand it. i can help him avoid the mistakes i made”. as an adoptive parent, i have never known the comfort of seeing a little person who resembles me physically, but now it turned out that he resembled me mentally, a realm of existence i actually treasured more. it became a standing joke in our household whenever our son’s streak of stubbornness surfaced: “are you sure you’re not his biological father too?” i left the neurologist’s office convinced that i could handle this. i was wrong. unlike me, our son’s symptoms included a lengthy speech delay. it would be three long years before our son started speaking beyond the level of a one-year old and another two before he would really show signs of catching up with his peers. if the diagnosis stiffened my resolve, those years of waiting, trying one approach after another, led me to consider the possibility that my son might never be the educated, self-sufficient person i want him to be one day. not only were these approaches costly, i began worrying about long-term financial planning in the event that he would always be financially dependent on us. it remains a nagging doubt that i face every day.’ looking back, we realise that our relatively easy acceptance of the situation was influenced by two factors: (1) our educational backgrounds and (2) the fact that this was not our first encounter with autism. author 1 has a nephew on the autism spectrum. as previously stated, author 2 identifies as living with asperger’s syndrome under the previous versions of the dsm – a classic ‘absent-minded professor’, in fact (clasquin-johnson 2014:6). this contributed to the diagnosis being less overwhelming, although autism became our focal point (hoogsteen & woodgate 2013:136). we also recognised the benefits of a diagnosis – knowing the underlying cause of our son’s developmental delays would enable us to address them appropriately (wang et al. 2012:2) and access resources that would remain unavailable without the imprimatur of the medical establishment (cf. zibricky 2014). a year later, we visited an educational psychologist. our son was unable to complete the school readiness test, and we were given the instrument to self-administer, for which we paid her r750 over and above the regular consultation fee. author 1: ‘over the next few days, i studied that school readiness test and actually attempted drilling him to prepare for the test the school was insisting he needed to take at the end of the year. after a single attempt to practise some of the underlying skills related to the test i abandoned it. he has always treated school and home as strictly separate and he refused to cooperate. i accepted it almost too easily since my heart was not in it anyway.’ there are indications of cynicism regarding diagnosis even among those empowered to make them. brock (2009), for example, reports that: although the number of supposedly classic cases of autism may for complicated reasons be somewhat rare, in adam’s case the psychologist made it clear that her diagnosis was primarily designed to secure a set of treatments for his particular developmental deficits. this made it especially obvious that the psychologist’s diagnosis functioned as a social rather than a strictly biomedical designation. one might be tempted to ask at this point what it would mean for adam not to ‘really have’ autism. like other psychological conditions, whether he ‘has it’ in some essentialist sense is much more complicated to establish than one would initially assume. (p. 11) for this reason, ‘borderline’ cases of autism remind us in a pointed way of the social construction of disease (dhar 2009:739). there is an alternative route to diagnosis in south africa, namely medical professionals in state hospitals where children younger than 6 years receive free treatment. however, there are few of them and waiting lists are extremely long (autism south africa 2017). having received the diagnosis, we scoured the internet for information on schools and support services in our vicinity, and after finding a single option, we looked further to the entire gauteng province. story 2: finding a school – an ongoing search all parents face a number of complex considerations when selecting a school for their children. these considerations are even more complex when deciding upon a school for a child with autism. they include: the school’s geographical location and admission criteria curriculum, particularly whether the official curriculum is followed (and the ability of a child to progress under that curriculum) whether specialised teaching approaches and methodologies are employed, and if the school facilitates access to additional support and therapeutic interventions the school’s accreditation and registration the qualifications and professionalism of the teaching and managerial staff the class size and teacher–learner ratio of course, affordability, including fundraising demands. however, because our options are limited, we consciously make compromises and even overlook serious shortcomings. author 1 is based in a university’s department of inclusive education. as a result, she is also deeply concerned about a school’s ethos – the intangible things like how sensitively and respectfully staff members treat children and parents, how welcome they feel and whether assessment feedback is delivered with empathy. author 1: ‘shortly after our son’s diagnosis, i seriously considered giving up my career to home school him. after all, i was a qualified early childhood teacher. i soon realised that since he would still require the additional therapeutic support, we would simply not be able to afford to live on one salary.’ (cf. baker & drapela 2010; ouyang et al. 2014) author 2: ‘my academic career was well on track. but would i have applied for my full professorship, and later my nrf rating, the moment i fulfilled the minimum requirements, if not for the high financial demands? perhaps not.’ today in south africa, few middle class parents opt for public schooling, as quality is perceived as very poor (maodzwa-taruvinga & cross 2012; spaull 2013). instead, both fully private schools and the uniquely south african semi-privatised construct ‘former model-c school’ serve this population. therefore, we often remind ourselves that even if our son was neurotypical, he would still attend a private school. the general perception of public schooling in this country does not, however, extend to those public schools that specialise in children with disabilities. these are generally highly regarded (autism south africa 2017). we considered this system of education, and we were on a 3-year-long waiting list for placement at a public special school for autism. author 2: ‘we visited the school and met the educational psychologist. but her opening statement “if your son comes here, he will never matriculate”, led us to eliminate the institution as a feasible option. i can accept that my son has limitations. i cannot accept those limitations being decided for him at the age of four, when they had not even assessed him.’ this school and similar institutions around the country have since come under scrutiny for not presenting the official south african curriculum. instead, they focus on teaching manual skills such as gardening, packing grocery shelves and washing cars. there is no shortage of these skills in the country, and in our opinion, these children are being prepared for lifelong financial dependence. this issue relates to the findings of a 3-year-long investigation on curriculum adaptation for learners with autism conducted by author 1 and will be further explored in a follow-up article. this thrust us firmly into the private sector where fees are high (between r5000 and r7000 per month in 2015–2016) even while accreditation is non-existent. as we soon found out, the high fees do not guarantee quality education. some independent special schools insist upon ‘facilitators’ being appointed and paid by parents in addition to the school fees. when confronted with this requirement, we realised that it would be for the teachers’ convenience and not our son’s. author 2: ‘we walked away and enrolled our son at a school where facilitators were not required, only to discover that some children there also had facilitators: those whose behaviour needed to be managed. this appears to be a hidden cost, as we were not informed about this upon initial enrolment. some parents were paying up to r5000 per month, roughly doubling the school fee.’ to date we have moved schools five times, an average of once a year. the schools have included a mainstream preschool, a specialised school for autism, two special schools and a small mainstream primary school. each school promised certain services and each has contributed to our son’s development and learning. each has also fallen short of their promises. we believe that parents often know when a particular school has done what they can and when it is time to move on. however, how soon they act on this will vary. moving on also requires a viable alternative, which is seldom available. our main considerations are whether teachers are qualified and skilled, whether the school follows the official curriculum and whether our son is able to cope with the daily demands of the school. however, it comes at a cost because teachers who possess higher levels of training and qualifications demand higher remuneration, leading to higher school fees. while these issues relate to the right to meaningful educational provision as articulated in international legal frameworks (marshall & goodall 2015), in reality these rights are often only accessible to those who can afford them. story 3: it is not simply the cost of school fees while school fees at private schools are high, it is not the only expense. in addition, there are therapy costs, additional childcare costs, medical costs and other considerations. for example, because of developmental delays, toilet training takes much longer (richardson 2015). progress through the school system may also have to be extended: one cannot blithely assume that the special needs child will advance along with his or her age cohort despite this being a policy imperative (department of education 1996). costs could be arranged into three categories: direct medical, direct non-medical and indirect productivity costs (fletcher et al. 2012:50; leigh et al. 2016:2). in addition to school fees, we also relocated to be closer to english-medium schools serving children with special needs. in tshwane, these schools are concentrated in pretoria east. that happens to be the upper middle class area of tshwane, where house prices are considerably higher than elsewhere in the city. the schools are in this area because this is where the people who can afford to pay live. and others, like us, will relocate to the area with appropriate schools, even if they cannot really afford to. over the past 7 years, we have worked with six different speech and language pathologists (speech therapists) and three occupational therapists. our son has received other therapeutic interventions such as auditory integrated training, and various learning integrated therapies. during 2014 in a single month when our medical aid informed us in the middle of the year that our funds were exhausted, we received a therapy account (excluding school fees) of over r13 000. in a study conducted in the usa, shimabukuro et al. (2008:546) found that the average medical expenditures for children with autism were 4.1–6.2 times that of children without autism. according to existing research, having a pet dog has a number of benefits for children with autism (e.g. see hall et al. 2016). in our experience, this has turned out to be true. our lively jack russell terrier is our son’s constant companion, at the receiving end of verbal instructions, recriminations and blame for any mess or breakage. in short, she has aided our son’s language development, social skills and imaginative play. our son: ‘sofia is not naughty! sofia is cute. sofia is best friend!’ the dog has also primed our son for therapy (cf. hall et al. 2016). yet we would not have had the dog if it was not for our son, and she is another expenditure. the veterinary facilities in this area put human hospitals to shame and are priced accordingly. while our son is not on medication (at our own insistence), this can be a significant additional cost as noted by shimabukuro et al. (2008:550), especially if medical aid schemes insist on generics that do not agree with some children. more than once, teachers and school administrators with no medical qualifications have hinted that we should consider medication. but there it has remained. our son’s problems are not behavioural; in fact, he tends to be a model citizen at school. author 2: ‘other parents have been less fortunate and “what is your child on?” is a common topic of conversation outside the school gates, soon followed by “and what are you on?”. one can add the cost of medication to the general cost of raising a child with autism.’ in our case, a significant additional cost has been dental care (cf. du et al. 2016). instead of biannual check-ups at a dentist’s surgery, we need to book into a private clinic to have routine check-ups under anaesthetic. this has averaged r10 000 annually with a separate anaesthetist’s bill and a compulsory co-payment. story 4: how deep are your pockets? during an assessment feedback session, we asked the head of a therapy centre, ‘how many sessions do you recommend for our son?’ we received the response, ‘how deep are your pockets?’, followed by a recommendation for ‘as much as possible, as often as possible’. author 1: ‘i immediately replied, “our pockets are as deep as they need to be. we will pay anything we need to. it will simply be our priority”. however, they could not tell us how much would be enough. they were extremely vague on what exactly they will focus on.’ at this meeting, we also signed a legal disclaimer that we would not sue the school if the therapy was not effective. we later heard that the school had recently won a protracted high court challenge by a family who was dissatisfied about their child’s progress. it also reinforced that the therapy centre was primarily a business protecting its own interest. at the time, because we were aware of the importance of early intervention, we signed up for five sessions of speech therapy per week (one per day) and three sessions of occupational therapy. this amounted to at least 32 sessions per month. it therefore came as a shock when our son had a 3-day-long pre-admission assessment at his next school 2 years later for which we were charged r2500, and the report read ‘parents claim that child has received 32 sessions of therapy per month … no evidence of previous therapy’. while this unleashed numerous questions related to how he was assessed, we were deeply troubled that the therapy might have been a waste of time and money. the fact that children are re-assessed on every move to a new school, even though an official diagnosis is demanded, shows that there is little coordination or professional regard between the people involved. it is a clumsy, wasteful system that once again raises the expense of educating a special needs child. author 1: ‘these schools are completely unaccountable! we did not even receive written feedback on the assessment. on my request, the secretary innocently made a photocopy of the assessment record but it [was] not usually given to parents. when i told the principal that i had a copy, she was furious. how can we monitor them if we have nothing in writing? i feel very uncomfortable about this.’ we believe that therapy can be effective. we have come to regard the effects of therapy as cumulative, as results are only evident after several years (chasson et al. 2007). however, only our sixth (and current) speech therapist is highly skilled, although we only realised this when we compared what she does to what the previous therapists did, and most importantly, our son’s progress. but then, what were we paying for all the years before? story 5: assessment feedback meeting – can our son move on to grade 1 next year? we often question what makes ‘special schools’ special? is it their approach, curriculum, specialised teaching methods or specialised teaching skills? what exactly are we paying them for? we are always well prepared for assessment feedback meetings. we analyse each report, compare it to previous reports and agree on a set of questions that we will ask. the main question for us in early 2016 was whether our son would be ready to progress to grade 1 by the end of that year and take on the formal curriculum, even if only with extra support. the teacher replied, ‘it does not depend on me. i will not be involved. the grade 1 teachers will decide and there will have to be a formal school readiness test.’ author 1: ‘this simply confirmed what we already suspected – that the teacher is inadequately trained, even though the fees are the highest we’d ever paid. we are being prepared for yet another pricey re-assessment. she often makes remarks concerning his progress, usually related to some new skills that she has recently observed. these were the same things he’s been doing for years at home. school is supposed to teach new things, not only recognise them years later.’ as a parent-practitioner, author 1 has realised that teachers often underestimate what children can do, and as a result, fail to stimulate and challenge them appropriately. author 2: ‘there was a more fundamental issue involved. we understand that progression from the special needs programme to the regular, though still additionally supported, grade system would have to involve a team approach to assessment and could not rely on a single individual. but when that individual is the child’s class teacher, who has been with him, six hours a day for over a year, how can she not be involved in the team at all?’ there were internal power relations between school management, the special needs teachers, the regular teachers and the therapeutic team that, in our estimation, took precedence over the best interests of the child. by the following week we had given the school written notice but it would be 3 months before we could move, as prescribed by our contractual obligations. it was after all, first and foremost, a business. but from that day onwards, we gave up on the school, and on the idea of ‘special’ schooling, and enrolled our son in a small private school that caters to both special needs and typically developing children. here he studies the official curriculum, albeit with much extra support, and is exposed to peers from whom he can really learn. author 1: ‘i wonder how special schools get away with operating the way that they do. do parents evaluate schools on the basis of value for money? are we getting what we are paying for? how will we know? or do we assume that the greater our financial sacrifice, the better chance we are affording our children?’ let us look at this from another angle. we have spent approximately 10% of our after-tax income on our son’s education and therapy in 2015. but we have resisted the temptation to subject him to applied behavioural analysis (aba), an intensive neo-behaviourist form of therapy, not only because of the cost but because we as scholars disagree with the method (cf. dawson 2003). it is one of the most popular methods available in south african private special schools and is extremely expensive. no aba institution was prepared to give us an upfront estimate, but their recommended 40 h per week of therapy, at medical aid rates of r440 per hour, works out to r17 600 per week or r704 000 per year for a 40-week academic year. if we apply our estimate of 10% of our income to the annual cost of aba therapy, we would require an after-tax income of r 7 040 000 per annum. in 2011, it was reported that just over 2000 south africans earned more than 5 million rand per year – the top tax bracket, also known as the y group (anon 2011; sapa 2011). now consider that a survey by the bureau of market research (2011) at the university of south africa regards 10.1% of the population as ‘affluent’, a category that in 2011 started at an annual income (before tax) of r1 329 845. the quest salary survey for 2014–2015 showed that the median pre-tax monthly salary for a chartered accountant with less than 5 years of experience (the most likely case for a parent of a young child) is just r42 500, and this was the most lucrative of the many job descriptions covered by the survey (makhubele & quinan 2014). in south africa, even a chartered accountant cannot expect to pay the enormous fees charged for aba. the reality is that south africa has one of the highest gini coefficients in the world. around a quarter of the working-age population is unemployed and grinding poverty is all too common. it is important to note that in this particular article, we do not intend to debate on the efficacy or ethics of aba. what we wish to make clear is that its current implementation in south africa is not financially feasible for all but the most affluent members of society. we have to consider that most of these are commercial enterprises that will sell you as much therapy as possible without providing any guidance regarding which intervention is needed for a child, which has also been noted by al jabery et al. (2014:475). conclusions south africa is a signatory to a number of international conventions and its internal policies promote the concept of inclusion. it therefore cannot leave the education of its citizens with autism to the private sector, where only the privileged few will benefit. nor can it be left to the initiative of an individual family. from the perspective of critical autism studies, we need the joint involvement of the medical and educational establishments backed by the state. education is about transformation, about optimising the abilities of all learners, including those with autism. south africa urgently needs cost-effective early intervention options that can provide meaningful educational opportunities for all in an inclusive setting. such options can be created, and in this respect india seems to be ahead of south africa (brezis et al. 2015; vaidya 2016). however, directly importing intervention programmes from india seems no more likely to result in a system appropriate to south africa than importing it from the usa has been. the hard work needs to be done here. there is also a need for government to regulate the private providers operating in the field. this should include registration, accreditation and mandatory training programmes. there should also be an ombudsman for accountability purposes. as long as parents have no recourse when they are dissatisfied with services provided, they will remain vulnerable to exploitation, especially because private providers are not held accountable for providing quality and meaningful educational services and support for children with autism. limitations of the study the limitations of this study are linked to its methodology. a single case study, whether autoethnographical or not, cannot give a definitive answer to a research problem. it can, however, point out the direction that future research with different methodological strategies must take. recommendations we offer the following advice to parents: insist that schools and therapy centres motivate for the number of sessions required. therapists seldom tell parents that a child has had sufficient therapy. make sure that therapists can explain their support plan and strategies including exactly what they are working on, how and why. also ensure that you initiate follow-up review meetings if they do not. trust your instincts in this regard and assess your child’s progress for yourself, against the goals previously set. for educators, researchers and policymakers, however, our recommendations are that we urgently need to examine the underlying assumptions of existing intervention strategies and create new, affordable ones that can be rolled out to more than just the urban elite. acknowledgements funding for this article was provided by the unisa women in research project. we would also like to thank prof. auma okwany of the erasmus university rotterdam for suggesting autoethnography as our methodological approach. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.g.c.-j. is the primary author and wrote 60% of the article. m.c.-j. wrote 40% of the article and was responsible for final formatting and fact checking. references al jabery, m.a., arabiat, d.h., al khamra, h.a., betawi, i.a. & jabbar, s.k.a., 2014, ‘parental perceptions of services provided for children with autism in jordan’, journal of child and family studies 23, 475–486. https://doi.org/10.1007/s10826-012-9703-0 anderson, l., 2006, ‘analytic autoethnography’, journal of contemporary ethnography 35(4), 373–395. https://doi.org/10.1177/089124160528044 anon., 2011, over 2000 south africans earn over r5million per year, viewed 26 june 2017, from http://mybroadband.co.za/vb/content.php/2327-over-2000-south-africans-earn-over-r5million-per-year. baker, l.a. & drapela, l.a., 2010, ‘mostly the mother: concentration of adverse employment effects on mothers of children with autism’, the social science journal 47, 578–592. https://doi.org/10.1016/j.soscij.2010.01.013 barua, m., 2008, ‘lessons from neeraj, my son with autism’, journal of religion, disability and health 11(2), 29–40. https://doi.org/10.1300/j095v11n02_05 benson, p.r., daley, d., karlof, k.l. & robison, d., 2011, ‘assessing expressed emotion in mothers of children with autism: the autism-specific five minute speech sample’, autism 15(1), 65–82. boylorn, r.m. & orbe, m.p. 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university of kwazulu-natal, south africa citation quarmby, c.a. & pillay, m., 2019, `corrigendum: the intersection of disability and food security: perspectives of health and humanitarian aid workers’, african journal of disability 8(0), a551. https://doi.org/10.4102/ajod.v8i0.551 note: doi of original article: https://doi.org/10.4102/ajod.v7i0.322 corrigendum corrigendum: the intersection of disability and food security: perspectives of health and humanitarian aid workers candice a. quarmby, mershen pillay published: 10 oct. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in the version of this article initially published, candice a. quarmby’s affiliation was incorrectly mentioned as disciplines of audiology & speech-language therapy, university of kwazulu-natal, south africa. her correct affiliation is discipline of speech-language pathology, university of kwazulu-natal, south africa. the error has been corrected in the pdf version of the article. the author apologises for any inconvenience that this omission may have caused. abstract introduction theoretical framework rationale research design ethical consideration findings discussion contribution of the study limitation of the study and conclusion recommendations acknowledgements references about the author(s) peter mapepa department of education, university of johannesburg, south africa meahabo d. magano department of psychology of education, university of south africa, south africa citation mapepa, p. & magano, m.d., 2018, ‘support to address barriers to learning for learners who are deaf’, african journal of disability 7(0), a381. https://doi.org/10.4102/ajod.v7i0.381 note: this article is partially based on the author’s thesis of the degree of doctor of education in inclusive education, university of south africa, with promoter prof. meahabo dinah magano, received 23 april 2017. original research support to address barriers to learning for learners who are deaf peter mapepa, meahabo d. magano received: 25 apr. 2017; accepted: 22 june 2018; published: 22 oct. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is great importance in support services for successfully addressing the barriers to learning optimally or learners who are deaf. the study, though conducted in south africa, has national and international appeal. objectives: the aim of the study was to identify educator reflections on support services needed for them to address barriers to learning of learners who are deaf. method: the study used a qualitative design for collecting data in natural settings. a sample size of 11 educators of learners who are deaf was purposively selected from two provinces of south africa. the study used an open ended individual interview questionnaire. results: data was analysed using qualitative content analysis considering the context of the schools in which the study was carried out. results showed that there was: limited curriculum support in special schools; lack of support and inadequate teaching and learning materials; overcrowding in one school and; limited support of multidisciplinary professionals in most schools. conclusion: the study provided a framework for support services important for research, policy and practice. of significance was the relevance of the universal design for learning (udl) theoretical framework in implementing support services programmes in schools. introduction support services are needed in addressing barriers to learning of learners who are deaf and learners who are hard of hearing. these include the provision of appropriate teaching materials. visual materials appropriate for learners who are deaf include pictures, diagrams and illustrations to enhance their understanding. it also includes slides and dvds. availability of adults who are deaf is important for role modelling because this forms a link between the teacher with normal hearing and the learner who is deaf (hauser et al. 2010; humphries et. al. 2013). adults who are deaf play an important role in sign language training and ensuring that the new learner who is deaf is introduced to deaf culture (mcllroy 2010). the challenge facing most teachers today is that they have not been taught how to cope with diversity of learners now entering schools (storbeck 2009:356). differentiation is important to set up individualised education plans (ieps) to assist learners experiencing barriers to learning. assessments are also adapted to consider the specific barriers of each learner. storbeck (2011:354) maintains that most teachers in most developing countries are unable to differentiate, adapt material and use sign language. the department of education (doe 1998:17) is concerned that assessment remains the responsibility of the specialist teacher. the specialist teacher is responsible for differentiating and adapting common examinations which is time-consuming. the doe (2005) supports provision that is brought to the child rather than the child to the provision. for example, nutritional support is provided through the schools nutrition programme and health promotion. social support includes the provision of safe and clean water and the availability of proper sanitation (gascon-ramos 2008:63). gason-ramos (2008:64) is convinced that both psychosocial and material supports are important. the department of basic education (dbe 2011) supports making provision for both curriculum and co-curricular support services which are important for the education of the learner who is deaf. theoretical framework the study is informed by the universal design for learning (udl) which seeks to make expert learners of all students (teaching excellence in adult literacy [teal] 2010:2). the udl is a theoretical framework that focuses on assisting teachers to plan learning with intent to meet the diverse needs of learners (rose et al. 2016). the theory utilises multiple approaches to engage learners in the learning process (rose, meyer & hitchcock 2005). the udl sets out goals and uses tools, materials and assessments geared to address the different barriers to learning (rose & meyer 2006). teaching excellence in adult literacy (2010:2) maintains that learners are heterogeneous in ability and that the best way to educate them is to use different kinds of support. this also involves scaffolds teaching learners starting with the easier, more basic concepts, advancing gradually to the more advanced abstract concepts. learners have different kinds of abilities. yet, the general curriculum treats them as a homogenous group. the udl is an important lens for the study on learners who are deaf to gain the necessary learner support. rose and vue (2010) support a curriculum that is flexible and effective for every learner whether average or slow. ralabate (2011) maintains that a curriculum that is responsive to learner diversity reduces barriers to instruction. emphasis of early special education legislation was on the need for learners to be taught in the least restrictive environment (marshark & spencer 2003; rose & meyer 2006). the udl standards emphasise teaching learners who are deaf using simplified graphical information. rose, meyer and hitchcock (2005) are of the view that ieps are effective methods to meet the needs of every learner. teaching methods have to be flexible and adjusted through consistent monitoring of student progress (rose et al. 2016). learners who are deaf learn effectively if a variety of materials are available to support their learning. with udl, various methods and materials are used to assess student knowledge, and skills, making sure that assessments are valid. rose and vue (2010) maintain that udl motivates learners to be self-directed active learners using visual materials which they can understand and interpret. learners who are deaf can also assess their own learning needs, monitor their progress and remain motivated in their learning (rose &vue 2010). rationale various forms of support are needed for learners who need additional support, such as the learner who is deaf. the department of education (dbe 2014) suggests that support of learners who are deaf is important for them to learn effectively. it recommends having a south african sign language (sasl) interpreter to assist the classroom teacher who is not competent enough in sasl. it is also important to have an educator who has been trained in sasl to provide teaching. psychosocial support to manage behaviour challenges associated with the child’s disability is also necessary (gascon-ramos 2008:64). the dbe (2014:16) suggests support needed such as assistive devices, specialised equipment and teaching and learning support materials. on curriculum design and implementation, it is important for curriculum differentiation and emphasis on ieps to meet the individual needs of learners (dbe 2014:16). learners further need to be trained in areas of language development and to have good mentors who provide the necessary guidance (storbeck 2000:58). in the need for support for learners who are deaf, research studies in the united states have indicated that using multimedia promotes effective learning for the learners (marshark & hauser 2013). the need for specialist support staff is one of the greatest support needs (storbeck 2009:356). assistive devices such as hearing aids can be very useful for some learners. visual materials and pictures, dvds and videos help learners understand better what they are learning (storbeck 2009:360). curriculum differentiation helps to motivate learners through ieps and adapted assessments, yet it is a challenge in most developing countries (storbeck 2009:356). however, governments globally have managed to change attitudes of their citizens towards people who are deaf from negative to positive (hauser et al. 2010:487). policies and legislation are some of the available support systems, for example, support for inclusion and education for all (efa). education for all is about making it possible for all learners, despite their barriers to learning, to be able to access the curriculum. the government of south africa used the education white paper 6 to build an inclusive education and training system (department of basic education [dbe] 2011). this was followed up by the screening identification, assessment and support (sias) document which clarified issues mentioned in the white paper 6 for action and implementation (dbe 2011, 2014). support should be brought to the child rather than expecting the child to play an active role in seeking support (marshark & hauser 2013; rose & meyer 2002). the dbe (2011) stresses that support services must protect and ensure safety of learners. as part of social support, the social welfare services play an active role in learner support (gascon-ramos 2008). the dbe (2011) stresses the importance of maintaining balance between curriculum and co-curricular supports for learners who are deaf. curriculum support is a whole school issue. curriculum is what is taught, how it is taught and under what conditions it is taught (dbe 2011). for curriculum to be effectively implemented, it has to be flexible and accessible to all learners including the learners who are deaf (fernandes & myers 2010). the educator provides some learners’ curricular and co-curricular support needs (storbeck 2009). the teacher has a responsibility to motivate learners by using appropriate teaching strategies and active learning techniques. this brings intrinsic motivation, eagerness and purpose to learn through self-directed tasks (teal 2010:2). intrinsic motivation is important for self-knowledge and self-control in the learning situation, avoiding attribution and uplifting the value of educational tasks (gascon-ramos 2008:59). it is important for learners to know who they are, what they can do and what they want to achieve. it also helps learners who are deaf to access the wider society. this is achieved by getting motivated to read and write in english as a second language, for example. personalising education helps create positive involvement in activities that have personal meanings to learners (gascon-ramos 2008:63). gascon-ramos (2008:59) explicates the positive benefits of involving parents in effective curriculum delivery of learners who are deaf. parental involvement is part of providing access and motivating learners to want to learn (solvang & haualand 2014).additional support is important and can be provided by the district-based support team. the dbe (2011) asserts that some of the support services facilitated by the school-based support teams (sbsts) include staffing, assistive devices, assistance in curriculum differentiation, whole school development, school management team (smt) training, educator development, parental development and specialised facilities. curriculum support is a whole school issue. curriculum is what is taught, how it is taught and under what conditions it is taught (dbe 2010). for curriculum to be effectively implemented, it has to be flexible and accessible to all learners including learners who are deaf. the following research question was formulated to guide the study: ‘what are educator reflections on support services needed for them to address barriers to learning of learners who are deaf?’ research design the study is a qualitative design in data collection and analysis and interpretation of data (creswell 2007). the study used an interpretive design paradigm with the intention of obtaining teachers’ perspectives on what they said on their perceptions on the available support services to enable teachers to address learners’ barriers to learning. qualitative methods consider several realities based on the person perceiving it and the context on which it is perceived (guba & lincoln 2005). the qualitative method enabled variables to be observed in natural settings (denzin & lincoln 2000; smith, flowers & larkin 2009). the use of qualitative methods enabled individual participants to give different experiences and perceptions. the study followed a phenomenological approach allowing individuals to express their lived experiences (babbie & mouton 2011:28; joubish et al. 2014). in the qualitative study, a total of 11 primary school educators of learners who were deaf were purposively selected to participate in the interviews. participants were all teachers of learners with deafness, thus providing the same criteria (onweuegbuzie & leech 2007). participants were drawn from two provinces at special schools for learners who are deaf, teaching grade one to seven. both sexes were interviewed, consisting of eight women and three men. eight participants disclosed their ages. the age range was from 26 years to 60 years with four of them in the age range of 51–55 years. three of the educators did not want to disclose their ages. the instruments the interview elicits information from the interviewee (mcmillan & schumacher 2010:205). an interview involves a small number of people being interviewed on their perspectives on the programme or situation at stake (creswell 2007). the interview schedule had two sections. the first section sought information on biographical data. the second section was on academic wellness with reference to adaptation of the curriculum and support services in academic and communication with emphasis on issues of adaptation. the interview schedule instructions were simple, clear and concise as recommended by guba & lincoln (2005). data analysis data analysis involved organising and synthesising the data (babbie & mouton 2011:388). analysis helped in ensuring that a correct record of the interviews was reflected in the analysis (guba & lincoln 2005). coding was done by thoroughly analysing and selecting important elements in the interviews (babbie& mouton 2011:492). coding helped to categorise concepts and identify significant parts of the data (creswell 2007). patterns were developed in the categories, grouping together codes with similar meaning which were further developed as themes, which can be likened to core categories (babbie & mouton 2011:501). ethical consideration ethics clearance was provided by the research ethics committee of the university of south africa dated 17 november 2014, reference number 2014november/06849962/mc. findings the findings led to the following four themes: curriculum adaptation is an important support system. lack of support in appropriate teaching or learning materials. overcrowded learning space in one school. limited support of multidisciplinary professionals in most schools. curriculum adaptation is an important support system participants in the qualitative study indicated their perspectives on professional support in curriculum. participants reported that the current state of the curriculum adaptation in special schools was limited. this is clear from comments by some of the participants. participant d commented: ‘curriculum adaptation by the department of education is minimal.’ this comment suggests that curriculum adaptation was only available to a small extent. participant c noted that the doe was doing little to adapt the curriculum assessment policy statements (caps) curriculum. interviewee c commented: ‘the provincial education department expect from us to offer caps curriculum without adaptation.’ normally, when a new curriculum is introduced, teachers are trained in the teaching of the curriculum. for the caps curriculum, this was done for all subjects and phases. training was done for the foundation phase, and then it was extended to the intermediate and senior phases. training of teachers involved all the teachers including teachers of the hearing-impaired. comment by interviewee c suggests that the training did not consider disabilities such as hearing impairment. participants e and a gave comments that support those given by c as can be seen below. participant e commented: ‘especially subject facilitators do not understand the needs of deaf learners.’ the subject facilitators are the professionals based at regional officers who are responsible for training of teachers and ensuring effective implementation. the comment suggests no notable effort by the curriculum implementers to offer adaptation alternatives to teachers of learners who are deaf. participant a commented: ‘there is need for more support from inclusive education sector on implementation of the curriculum.’ the inclusive section of the doe is responsible for ensuring that learners experiencing barriers to learning are well supported in their learning. participants g suggested that the doe was not adapting examinations addressing specific needs of learners with hearing impairment. participant g commented: ‘deaf friendly examinations instead of expecting teachers to adapt.’ with adequate training, teachers should be able to adapt the examinations. however, as an answer to the follow-up question, the participant clarified the view that it was a responsibility of the teachers to adapt as seen in the following extract: ‘who do you expect to adapt deaf friendly examinations?’ (researcher) ‘[looking surprised by the question] the department of education should adapt not us the teachers.’ (participant g) ‘how will that help the learner writing the examination?’ (researcher) ‘[confidently] it helps the learner to personally read the questions in the examinations. it also helps because it saves time.’ (participant g) participant a commented: ‘there is need for more support from inclusive education sector on implementation of the curriculum.’ inclusive section of the doe is responsible to ensure support for learners experiencing barriers to learning. participant g suggested that the doe was not adapting examinations addressing specific needs of learners with hearing impairment. participant g commented: ‘deaf friendly examinations instead of expecting teachers to adapt.’ with adequate training, teachers should be able to adapt the examinations. however, as a follow-up question the participant clarified the view as seen in the following interview extract: ‘who do you expect to adapt deaf friendly examinations?’ (researcher) ‘[looking surprised by the question] the department of education should adapt not us the teachers.’ (participant g) ‘how will that help the learner writing the examination?’ (researcher) ‘[confidently] it helps the learner to personally read the questions in the examinations. it saves time and ensures that the questions are interpreted they were intended by the examiner.’ (participant g) from the above extract, participants feel that the doe lacked assessment policy to adapt examinations before they were dispatched to special schools. lack of support in appropriate teaching or learning materials support in adaptation is also viewed in terms of appropriate teaching or learning materials. participant e noted that: ‘the department of education should find ways of procuring appropriate teaching and learning materials for the learners.’ this sentiment from the participant points to a need for the procurement on the shoulders of the doe. participant g also suggested the need for: ‘provision of teaching and learning materials to improve academic work.’ these sentiments suggest that the doe was not playing an active role in effective learning of learners with hearing impairment because it was not assisting schools with the appropriate teaching or learning materials. however, notable support was evident in the procurement of hearing aids to assist some learners who are hard of hearing. interviewee c noted that: ‘support comes in provision of hearing aids by health personnel.’ this suggests that the government through the department of health was playing a positive role in providing hearing aids. hearing aids are a positive support to enhance their learning. provision of visual materials to enhance learning of learners who are deaf is an important support lacking in schools. participant h felt that: ‘it is easier, more natural for deaf learners to translate the visual sasl into meaning and knowledge.’ from the participant’s words, it is clear that communication was made effective enough by visual materials accompanied by words to assist the learner who is deaf. overcrowded learning space in one school in one school, there was limited learning space leading to overcrowded learners in the school. participant j noted that: ‘more classrooms are needed for learners to learn in a free space.’ participant j indicated that: ‘there is lack of facilities for skills training at our school. with inadequate facilities, teaching of skills is not effective enough.’ limited support of multidisciplinary professionals in most schools participants felt that there was limited multidisciplinary support in most schools for learners with hearing impairment. the following views by participants d, e, i and j reflect that participants expected a wide range of professionals to support teachers in school setting: ‘support comes through sbst, saps, health personnel assist in addressing barriers to learning.’ (participant d, female, 51 years, grade 2 teacher) ‘the school does not have many health professionals, for example, counselors, social workers, physiotherapists, occupational therapists and dietician.’ (participant e, female, 45 years, grade 6 teacher) ‘the health promoting schools by the department of health by nature is a good example of support.’ (participant f, male, 54 years, grade 7 teacher) ‘the sbst invites saps members to speak about safety and other issues.’ (participant i, female, 48 years, grade 1 teacher) ‘multidisciplinary support is not complete.’ (participant j, female, 35 years, grade 3 teacher) participants f and j’s comments show that in some schools, support of a multidisciplinary nature was not present or was inadequate. however, participants d, f and i appreciated the support given by some of the professionals from outside the school coming to support the school in a multidisciplinary approach. the schools’ sbsts play an important role in facilitating the multidisciplinary approach. this was only possible where the sbst was active. however, if the sbst was not active enough, it would lead to the opposite happening. this is evident in a comment by one of the participants. participant j said: ‘sbst does not give support.’ and: ‘we need interpreters.’ the participant’s comment on interpreters is important for educators who were not conversant in sasl. participants noted that networking was limited. with limited networking, educators were not able to learn from each other’s experiences. this impacted negatively in how they addressed barriers to learning. discussion the findings from this study led to emerging new themes: the need for appropriate training of teachers, set up specialised material units, create enough learning space in rural schools, and create multidisciplinary teams in all schools. the need for appropriate training of teachers several support services are not well provided for. findings from the qualitative study revealed that the current state of the curriculum adaptation in special schools was limited. a study by storbeck (2000:58) in south africa discovered that most teachers of the deaf failed to adapt because they had not trained in deaf education. other studies endorse the same argument, for example, glaser and van pletzen (2012) indicated that only 14% of teachers of learners who are deaf have well-developed sasl. deafsa (2009) reported of shortages of educators who are deaf to support the deaf education system. lack of training also manifests itself when educators fail to identify barriers to learning. most of the participants indicated that the dbe offered minimal and uncoordinated support for curriculum adaptation. experience from the united states also yielded similar results. the california department of education (1999) found out the fact that uncoordinated programmes in schools and in regional set-ups were a hindrance to curriculum adaptation. participants in this study felt that monitoring by subject facilitators was not effective enough because of limited awareness of the needs of learners who are deaf. the subject facilitators are the professionals based at regional officers who are responsible for training of teachers and ensuring there is effective implementation. lack of effective support has a negative effect on the quality of education of learners with hearing impairment. a swedish study by haualand and allen (2009) revealed that the level of education of learners with hearing impairment was poor, low and unacceptable. the department of education (2014) in south africa supports the findings by acknowledging that there are low levels of support for learners with hearing impairment. storbeck (2009:357) hinted that there is a need for well-planned psychosocial support to manage behaviour challenges associated with the child’s deafness. the department of education (2014:16) suggests that there should be specialist support staff. storbeck (2009:359) discovered that the level of support for south african learners with hearing impairment is generally low. qualitative studies revealed that learners who are deaf acquire limited use of language (storbeck 2000:58). participants clearly voiced that learners who are deaf face several challenges mastering content subject material and engaging in an independent study. prevalent language challenges with the language of teaching and learning also interfere with the ability to understand and comprehend concepts. learners who are deaf have very limited vocabulary as a result of not being able to engage easily into incidental learning. the department of education (2005) observes that in a mainstream classroom situation, the learner who is deaf can be seen to exhibit difficulty in spelling and vocabulary. they also demonstrate difficulty in interpreting information and appear to tire or give up easily (schirmer 2001:84; scott 1996). participants also spoke negatively about the lack of deaf-friendly examinations. teachers were expected to adapt the examinations so that they could be accessed by the learners who are deaf. the challenge with examinations is further compounded by the fact that some of the learners have additional challenges. in the united states, a third of learners who are deaf had additional disabilities (gascon-ramos 2008). it is the responsibility of the specialist teacher to differentiate and adapt common examinations. low levels of support in assessment on examinations are a concern for many researchers and educators in deaf education (storbeck 2009:354). set up specialised materials unit the unique findings of the study unearthed the lack of appropriate teaching learning materials. other studies highlight the importance of visual materials (storbeck 2000). appropriate teaching and learning materials are necessary not only for group learning but also for ieps (gascon-ramos 2008:64). create enough learning space in rural schools the challenge of facilities can be a challenge to the not so well resourced rural schools. learners at such a school do not pay fees and are dependent on government grants for their survival. insufficient learning space can make the implementation of ieps challenging. a study by the virginia department of education (2012) in the united states found out that small classes yielded better results for learners who are deaf in academic work, while large classes led to poor performance. create multidisciplinary teams in all schools participants felt strongly about the need for a multidisciplinary approach to support teachers. several studies emphasise the importance of the multidisciplinary team (gascon-ramos 2008:64; johnson 2004; reagen 2008). professional support includes having professionals such as physiotherapists, occupational therapists, speech therapists, nurses, audiologists, counsellors, dieticians and social workers (kirk, gallagher & anastasiow 1997:110). school-based support team plays an active role in addressing some of the barriers. however, some of the sbsts were not active enough in this study. the department of education (2011) also emphasises the special role of the sbsts in providing support for the education of learners experiencing barriers to learning including learners who are deaf. findings from the study revealed that there was low level networking among educators such that they could not learn from each other. studies by schirmer (2001:86) in the united states and gosjean (2001) in switzerland discovered that lack of networking led to teachers falling behind in developments in deaf education. this impacted negatively in how teachers addressed barriers to learning of their learners. contribution of the study the study contributes to the education of learners who are deaf in the following manner: the study contributes in terms of research, policy and practice. underpinned in the study is theoretical significance and influence of the udl. in south africa and other african countries, inclusive education policies and practices are influenced by global trends. the study acknowledges the role of dalton, mckenzie and kahonde (2012) in exploring ways to implement udl with practical training of teachers and therapists. this study makes further propositions and directions on how further research can be carried out on udl. the study provides a framework for support services in addressing barriers to learning of learners with hearing impairment. the researchers hope to share the findings with policy-makers in order to influence policy. this includes the need for provision of support in curriculum such as provision of appropriate teaching and learning materials. the researchers will also share the findings with educators of learners who are deaf to contribute to practice. educators have a unique role because they influence the direction and extent in which the different support systems in the education of the learner are pointed towards. limitation of the study and conclusion the study is of a small scale based on two provinces with a track record of deaf education. future studies can be carried out to involve more provinces and more participants. for example, only one educator indicated that the learning space was inadequate. future studies can explore that assertion; this helps to see if schools have enough learning space for the learners or whether it was an isolated case for that particular school. the study suggests that there is a need to enhance the extent of support in schools for learners who are deaf. such support is minimal at the present moment. furthermore, there is very little training currently available for teachers in sign language and curriculum adaptation. there is little meaningful support from dbe officials in terms of assessment with teachers taking a lot of time to adapt examinations. the dbe should play a more meaningful coordinating role in order to facilitate training, curriculum support and assessment of learners who are deaf. the provision of appropriately adapted teaching and learning materials would go a long way in ensuring barriers to learning of learners who are deaf are well addressed. recommendations as a contribution to the provision of learner support, this study recommends that adapted books and materials be availed to facilitate learning across all subjects. these books and materials would encourage visualisation. the dbe can play a leading role in this kind of support. this study recommends that there is a need for schools to have non-teaching professionals within the school setting to support social, emotional, career, spiritual and physical needs of learners. this study recommends that the dbe support to schools is important in organising training and provision of adapted teaching materials. in addition, different kinds of support are needed from parents, and governmental and non-governmental organisations to assist the schools’ efforts in addressing learners’ barriers to learning. acknowledgements the authors acknowledge the financial support provided by the university of south africa. p.m. acknowledges prof. jace pillay, the south african research chair: education and care, faculty of education, university of johannesburg, for his support. he is currently a postdoctoral research fellow at the university of johannesburg. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions p.m. conducted the study and collected data as part of the doctor of education research. m.d.m. supervised the study and provided all the necessary support in the production of the article. references babbie, e. & mouton, j., 2011, the practice of social research, oxford university press, cape town. california department of education, 1999, communication needs and quality of education for deaf and hard-of-hearing children: advisory task force, california department of education, sacramento, ca. creswell, j.w., 2007, qualitative inquiry and research design: choosing among five approaches, 2nd edn., sage, thousand oaks, ca. dalton, e.m., mckenzie, j. & kahonde, c., 2012, ‘the implementation of inclusive education in south africa: reflections arising from a workshop of teachers and 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findings, national centre for technology innovation, washington, dc. virginia department of education, 2012, guidelines working with students who are deaf or hard-of-hearing in virginia public schools, virginia department of education document, virginia, viewed 08 march 2017, from www.doc.virginia.gov setting the world to rights kill your darlings impact factors and leslie’s impact leslie’s ethics of care an ethic of other-centredness acknowledgements references about the author(s) charlotte capri department of clinical psychology, nua mental health services, gormanston, ireland citation capri, c., 2025, ‘the institute of leslie swartz: an ethics of care story’, african journal of disability 14(0), a1684. https://doi.org/10.4102/ajod.v14i0.1684 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper the institute of leslie swartz: an ethics of care story charlotte capri received: 14 feb. 2025; accepted: 16 june 2025; published: 30 nov. 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. setting the world to rights barely out of clinical psychologist training a second career ago, a naïve ‘someone should do something!’ grew stronger the longer i worked in public health intellectual disability services. the deep injustices in south africa’s unsettling approach to intellectual disability care fuelled a discomfort that would lead to doctoral research with leslie’s guidance (capri 2016). at the time, i had no knowledge of critical studies, care ethics, or disability models, but i knew something was wrong. still unsure but bolstered by valerie sinason (2010), i drafted a bold proposal that i believed would set the world to rights. the send button was pressed, unknowingly setting in motion the next 15 years of a professional journey as the words landed in the disability guy’s inbox. and he responded. kill your darlings invited to sit around that kitchen table for a first meeting, leslie took my vastly overambitious plan, sat me down with the work of joan tronto and eva kittay and an attainable idea took shape. his first piece of advice would reign in my writing over the next 3 years: talk simple. kill off your darlings. do so ruthlessly. i left armed with readings, homework and so many questions, but was invited back. from that point on, we sat together every 2 weeks, and each time leslie was prepared as if our work had been his only focus. he saw what i couldn’t – a chance to learn from and explore local lived experiences, the voices if you will, of intellectual disability care. from various locations on the disability continuum (swartz et al. 2012), we wanted to amplify voices of individuals who were silenced yet had important things to say, alongside those whose protests remained unheard. so, with kittay represented in its pages, our layered chronicle of intellectual disability care was examined and passed by sinason and tronto, themselves weaved into this care narrative. the quiet awareness of having been read by such unmatched minds will last a lifetime, along with memories of presenting work with valerie, lamenting care politics with joan, and escorting eva around cape town. impact factors and leslie’s impact the african journal of disability’s durability speaks to the resolute way in which leslie can take an idea and bring it to fruition. after all, with lieketseng ned and brian watermeyer, we are celebrating him in the very journal wherein prof. gubela mji conceptualised with him as founding editor-in-chief almost two decades ago. leslie’s acknowledgement and respect for collaborators leaves a mark on his students and colleagues as we continue to do the same for one another. my collaborations with leslie and others are captured in writings on esidimeni (capri et al. 2018), barriers to implementing national institute for health and care excellence (nice) guidelines (coetzee et al. 2019), intellectual disability rights (capri et al. 2018), psychiatric nurses’ experiences of intellectual disability care (capri & buckle 2015), and the unethicality of excluding intellectually impaired individuals from research (capri & coetzee 2012). they also led to articles on the united nations convention on the rights of persons with disabilities (uncrpd) as a care institution (capri 2022), relational voluntary-assisted-advocacy (capri & swartz 2018a), taking an ethics of care lens to person-making (capri 2018), developing an intersubjective frame for disability work (capri 2014), and the infantilisation of adults with intellectual disability (capri & swartz 2018b). under the supervision of leslie, a developing confidence in intellectual disability scholarship blended with boots-on-the-ground clinical psychology practice – implementation of findings and new learning is something he always conceptualises as an outcome of research. for example, that introduction to ethics of care in leslie’s kitchen became a 2021 position article with ockert coetzee on harsh caregiving, abuse and neglect, and the need for transformation in public mental health settings for individuals living with intellectual disability. our objectives were two-fold: to disseminate information and escalate our concerns regarding restrictive care practices to decision-makers in government and to make a professional contribution to their plans for overhauling mental health and residential services in the western cape. working with leslie also became an illustration of how academic research can be directed into practice to drive positive change while tackling clinical needs in resource-stretched public health services: from developing group psychotherapies with men with intellectual disability and addressing urgent cases of unsafe behaviours and risk, to establishing an outpatient multidisciplinary therapy and assessment room for young children with intellectual and developmental disabilities. leslie’s commitment to integrating research and practice left a lasting impact. leslie’s ethics of care leslie’s distinguished career as a clinical psychologist, his contributions to disability studies and his academic generosity woven into our ethics of care story can be further celebrated through the lenses of tronto’s and kittay’s frameworks. in doing so, we see how his careful work advanced critical psychology and disability studies while embodying a transformative, inclusive, and essentially democratic care ethic. leslie’s fold of thinkers is clear testament to his profound impact on critical and disability studies. his seminal contributions that weave together rigorous scholarship with the lived realities of disability, thereby illuminating the intersections of power, identity, and care concur with tronto’s (2011) relational and political view of care. she argues that care is not only about meeting immediate personal needs, but a fundamentally political and public resource. while leslie’s work underscores kittay’s recognition of dependency and the importance of communal care and interdependence as a normal part of human life (swartz 2011, 2012a, 2012b), his fostering of inclusive academic spaces and reshaping of institutional power structures highlights tronto’s political approach to care as a communal resource that requires respectful, thoughtful, and fair distribution. with researchers such as lieketseng ned, johannah keikelame, kudakwashe dube and hisayo katsui, leslie would go on to encourage african notions of interdependence when addressing knowledge gaps about how care is constructed in the global south (katsui & swartz 2021; keikelame & swartz 2019; ned, dube & swartz 2022; ned, keikelame & swartz 2022). in the ongoing aftermath of 2018’s esidimeni disaster, tronto’s (2013) caring with took on an especially personal meaning. her emphasis on solidarity, trust, and collective responsibility – care fundamentals so clearly lost in esidimeni – reminds me of collaborating with leslie on how the distribution of reimagined care in intellectual disability spaces could begin. of the many things that set leslie apart, one must be the mutuality with which he shares academic relationships curated and consolidated over many decades. leslie brings kittay’s (2019) reciprocity to life not only in his academic generosity but also in able-bodied: scenes from a curious life (2010). in able-bodied, leslie’s narrative of interdependence as a central facet of human life – an important part of a shared social fabric – gives character to kittay’s (2011a) norm of dependency (keikelame & swartz 2018). for both kittay and swartz, dependency is not simply a state one dips in and out of at various times and to various degrees. rather, the looming inevitability of being dependent on other human beings is an inherent condition of the human state. because we are equal in our inescapable dependence, this state is reciprocal. such reciprocity renders our latent interdependence into a source of equality in our mutual need for support, and thus a source of dignity and worth (kittay 2001; kittay, jennings & wasunna 2005). we only need to turn to how i lost my mother: a story of life, care and dying (swartz 2021) to see how leslie’s work upends dominant narratives on ability, dignity, and worth. how i lost my mother’s deeply personal care experiences challenge traditionally private care boundaries. it persuades us to view disability as a vital expression – not limitation – of human diversity that enriches our shared experience and deepens our understanding of equity in our inevitable interdependence (kittay 2015b). tronto (2013) would encourage us to view leslie’s interrogation of care and ableism as part of a broader project – one that challenges and transforms dominant discourses by centring narratives of care around the lived experiences of marginalised groups. his approach to academic supervision, clinical training, and critical writing insists that care is not merely invisible work performed in private domains, but rather a political practice that brings power relations into public scrutiny to be reassembled and equalised. in levelling out such hierarchies, tronto’s (2013) concept of caring with equally applies to lelsie’s academic practice. his willingness and commitment to sharing his expertise (and the experts in his network built over decades), mentoring colleagues, and fostering inclusive scholarly communities embodies tronto’s political and collective dimensions of care. by continually calling dominant narratives into question, leslie commits to a reconceptualisation of ‘who gets to decide what counts as legitimate knowledge’, and, perhaps more importantly, whose knowledge is deemed more legitimate. he encourages us to surrender to epistemic humility, to a truer expertise located in stories of lived marginalisation, exclusion, and disablement (kittay 2020). this reclaiming of knowledge, grounded in lived experiences alongside robust examinations by scholars from diverse backgrounds, some with disabilities themselves, aligns with tronto’s (2020) democratisation of care. leslie’s research and advocacy have sought to dismantle stigma and promote policies that recognise the value of every individual, regardless of ‘bodiedness’ or where they happen to be located on the continuum of ‘changing states of impairment and health’ (swartz et al. 2012:951). while kittay’s (2011a, 2019; kittay et al. 2005) focus on dependency and inclusion is particularly relevant to disability studies, swartz’s work reframes disability not as a mark of diminished worth but rather as an attribute of human diversity. disability, then, is deserving of care and a humble recognition that we share common vulnerabilities of blood, brain, and bone. kittay would argue that justice requires reforming our social and institutional policies to better accommodate and celebrate human vulnerability. by reading kittay (2011b, 2015a, 2015b), we see that swartz provides a framework for reorganising both academic priorities and societal norms, helping to shift a narrative of deficiency to one of mutual interdependence and vulnerability, and enriching moral and political discourses on care justice. by advocating for the rights and dignity of people with disabilities, and by challenging traditional paradigms that overvalue able-bodiedness above all else, swartz and kittay converge on the intention to centre ethical and political transformation around the universal human condition of ubuntu – ‘an african ethic of interdependence and relatedness’ – and inherent dependency (keikelame & swartz 2018; mpoe & swartz 2019:4). consistent with kittay’s (1998, 2025) call for policies that support those who supply the care we demand but are unable or unwilling to provide, swartz lays the bedrock for work to be taken forward on crafting a more equitable society in which we will all eventually become care dependent. the ideological concept of ubuntu, literally ‘humanness’, adds much to this by enriching their care ethic with an african idea of mutuality, whereby ‘one’s humanness is instantiated through one’s caring for others’ (smith et al. 2013:498). framed by the care ethic of ubuntu, ‘the doing’ of care work in society – no matter the setting – is then valued as purposeful and with respectful acknowledgement to all participants involved in the exchange of care labour. yet leslie’s work engenders a disquietude about the interplay between disability, inequity, and the distribution of care resources and the impact of their rightful distribution – or loss – across policy, funding, and programme settings (mckinney et al. 2024; mkabile & swartz 2022; swartz 2019; swartz & bantjes 2016; swartz & schneider 2006; watermeyer & swartz 2008). irrespective of the fact that this redistribution has always mattered and we have been caring, we must care now more than ever. we learn from kittay (2011b, 2015a, 2015b) that justice for dependency care, and for those individuals who exchange it, requires the nurturing and safeguarding of socio-political policies by weaving human vulnerability into the fabric of caring societies. as constitutional government and hard-earned inclusion, equity, and diversity projects come under threat in a rights-sensitive part of the world (trotta, shalal & flowers 2025), we risk overlooking creeping indifference to the relegation of disability issues in less clamorous countries. such injustice should scare and unsettle us all. it matters when the moral worth of people ‘who cannot be self-reliant, autonomous, or productive in the ways that are commonly valued’ is being rescinded (kittay et al. 2005:456). it matters when their places ‘at the table where their fates may be decided’ are taken away (kittay 2009:620). i do not have the courage to play out scenarios in which an expunction of human worthiness, value of life, equal rights, and equitable access to socio-political citizenship becomes increasingly real and deletes our interdependent humanity. but leslie has shaped others who might, and who will. a next wave of subversion is required – one that reshapes possibilities for disability, care, and social justice (swartz et al. 2012). because when the human condition is being challenged, it ‘matters that others take up the scribe function’ (sinason 2010:3). an ethic of other-centredness beyond his humaneness and scholarly achievements, leslie embodies a range of qualities that have either endeared him to, or distanced him from, those who know him: persistence, generosity, humour, adamance, vulnerability, brilliance, wisdom, defiance, vigour, and a willingness to embrace the new and never-been-done. his eclectic reading habits enrich conversations that would, from time to time, include references to you magazine, blending the serious and whimsical in ways that only leslie can. as supervisees, mentees, colleagues, or friends, we have all gathered around that kitchen table for meaningful discussions, and have left feeling valued and heard, even amid the half-dozen other appointments leslie had that day. a bit later in the week, perhaps having gone out for milk, you realise how intently he focussed on you, and how he guided you through complex arguments while gently steering you away from potential pitfalls. leslie’s mentorship is a delicate balance of support and autonomy, of calm disagreement with your ideas while steeling you for bold risk taking. his belief in others’ potential has encouraged the development of numerous individuals into authentic practitioners and rigorous academics. his inimitable legacy, both personal and in print, will continue to invigorate the work of colleagues and inspire future scholars for generations to come. beyond advancing academic discourse, his influence extends into the personal and professional journeys of many. beyond his research output and pioneering ideas, leslie is in the lives he has touched, minds he has inspired, and the enduring academic community he has helped to shape. as we celebrate his incredible contributions, let us wish him health, rest (in whatever form it may come), contentment, and peace, and let us do so with care. acknowledgements i would like to acknowledge rose cloete and stephan lourens for their proofreading time and effort. their suggestions and comments taken up during the writing of this community article were invaluable. i hope i gave them due care. thank you to the editor and reviewers for their helpful comments that much improved the manuscript. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution c.c. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the author is responsible for this article’s results, findings, and content. references capri, c., 2014, ‘on developing an intersubjective frame for intellectual disability work’, disability and rehabilitation 36(5), 418–423. https://doi.org/10.3109/09638288.2013.793407 capri, c., 2016, ‘thinking about intellectual 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of disability and impairment: the distortion of personal and psychic boundaries’, disability & society 23(6), 599–610. https://doi.org/10.1080/09687590802328477 abstract introduction background literature review the problem statement purpose of the study theoretical framework research methodology results discussion recommendations conclusion acknowledgements references about the author(s) macdelyn mosalagae department of studies in education, faculty of humanities, university of the witwatersrand, johannesburg, south africa tanya l. bekker department of studies in education, faculty of humanities, university of the witwatersrand, johannesburg, south africa citation mosalagae, m. & bekker, t.l., 2021, ‘education of students with intellectual disabilities at technical vocational education and training institutions in botswana: inclusion or exclusion?’, african journal of disability 10(0), a790. https://doi.org/10.4102/ajod.v10i0.790 original research education of students with intellectual disabilities at technical vocational education and training institutions in botswana: inclusion or exclusion? macdelyn mosalagae, tanya l. bekker received: 24 aug. 2020; accepted: 08 sept. 2021; published: 22 oct. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite a commitment to achieving inclusion for all by the botswana government, the enrolment of students with disabilities in botswana’s technical and vocational education and training (tvet) institutions is still fraught with confusion as reflected by its practice and implementation. exclusionary rather than inclusive practices remain prevalent. objective: this study explores students with mild intellectual disabilities’ experiences of inclusion or exclusion in tvet institutions using key concepts of the capability approach. method: a phenomenological interpretive qualitative design was adopted. one government, technical vocational institution, offering programmes for students with disabilities in botswana was conveniently selected. fourteen students were purposefully selected from this institution based on the criterion that they were students with mild intellectual disabilities. individual interviews served as the data collection method to enable participants to voice their experiences of inclusion or exclusion at the tvet institution. thematic content analysis was utilised to analyse the data. results: it was found that whilst students with mild intellectual disabilities are offered an opportunity to enrol at tvet institutions, they are faced with social and epistemological exclusion, deliberate marginalisation, labelling and emotional abuses. conclusion: these negative experiences hinder students’ achievement by limiting their capabilities. keywords: botswana; capabilities approach; disability; epistemological access; exclusion; formal access; inclusive education; technical and vocational education and training. introduction current educational policies developed in most countries have a primary mandate of leaving no one behind. given this mandate, of particular concern is the educational sector’s resourcefulness to meet the needs of all regardless of different educational needs and/or disabilities. there is an increase in the diversity of students across educational levels and particularly in higher education (svendby 2020). this diversity results in complexities for institutions to adapt to students’ needs especially for students with disabilities. policymakers and institutional leadership need awareness of the inclusive experience of students with disabilities to evaluate the institutional practice of inclusive education. inclusive education is ‘an educational philosophy and practice that aims to improve the learning and active participation of all the students in a common educational context’ (moriña 2017:3). this article investigates the experiences of students with disabilities at a technical and vocational education and training (tvet) institution in botswana. the intention is to draw on the students’ experiences to find out in what ways the tvet system has included or excluded them. the students’ experiences presented in this article describe social and academic experiences in relation to inclusion in the institution. the focus is to understand these experiences within a selected tvet institution through the lens of the capability approach (nussbaum 2000; sen 1999). access to education in general and access to vocational education are primary means of enhancing career and employment opportunities for all people including those with disabilities. it is, however, frequently people with disabilities who experience limited access to these opportunities. the opportunities for inclusion of students with disabilities in israel, the united states and great britain are estimated at 8% – 14% (sachs & schreuer 2011). whilst in africa, 1% of them constitute total enrolment of students with disabilities in higher education (ngwena et al. 2014). these low percentages indicate challenges of equal participation for students with disabilities in the higher education sector globally (sachs & schreuer 2011) as well as in africa. in southern africa, not only are there enrolment challenges but there is also epistemological exclusion because of inaccessible curriculum and inequality in the distribution of resources within higher education institutions. moreover, a persistent lack of training in disability issues for personnel working with students has been observed by chakaita (2010) in zimbabwe, mutanga (2018) in south africa and subbie (2014) in uganda. in botswana, students with disabilities make up 1.9% of the higher education enrolment according to the botswana human resources council statistics. this statistics indicates the low enrolment number of students with disabilities in higher education (eide & mmatli 2015) and does not address the potential concern of epistemological access within the institution once enrolment is obtained. this suggests limited inclusion opportunities for students with disabilities in higher education, which motivated us to find out the experiences of students with disabilities in the tvet sector as far as their inclusion is concerned as a first step to address exclusionary practices. guided by sen’s (1992) assertion that all human beings possess agency, it becomes imperative to address these exclusionary experiences because students with disabilities do have agency and aspiration. they also need to be treated like other citizens of the country who have the right to the active participation of what they have reason to be and do (sen 1992). furthermore, it is essential to reflect on what students with disabilities encounter in tvet institutions to deepen the understanding of inclusion to combat exclusion in tvet. background inclusive education in botswana vis-à-vis international policy – how does botswana understand inclusion? the understanding of what constitutes inclusion in education has been a global development over time beginning in 1948 with the united nations (un) adoption of the universal declaration of human rights (udhr). this declaration highlighted social justice, equality and the right to education for all (efa). the un convention on the rights of the child in 1989 affirmed the right to efa children and emphasised that this right should be non-discriminatory. at the jomtien conference in 1990, efa was proposed, and equal rights to education for the disabled were emphasised. in 1994 in salamanca at the world conference on special needs education, policy revisions for the development of inclusive education were considered. the salamanca statement and framework for action on special needs education (unesco 1994) shifted efa’s emphasis, and whilst acknowledging equal rights for the disabled, extended focus to acknowledging each child is different and has unique learning needs, and that educational systems and programmes should accommodate for diversity. it was suggested that learners with barriers should be accommodated in mainstream school settings, and efa achieved through schools adopting an inclusive orientation (unesco 1994). moreover, the salamanca statement affirmed the need to combat exclusionary and discriminatory practices and change societal attitudes towards difference. the efa goals were reiterated at the world education forum in dakar in 2000, where they were endorsed and adopted and where the needs of the poor and disadvantaged were included as important for consideration in acknowledging diversity. these international developments demonstrate a shift from an initial focus on special educational needs and disability primarily to a broader consideration of recognising difference and diversity and combatting exclusionary pressures and practices as a key priority for inclusion in education. alongside international developments clarifying and elaborating on what inclusion in education means, individual countries were simultaneously developing their own educational, legislative and policy responses to developing inclusive education systems within their unique contexts. miles and singal (2010) suggest that inclusive education needs to be considered in relation to specific cultures and contexts to attend to educational inequalities specific to those contexts. this suggests that whilst inclusive education is a global common principle, it cannot be practised in uniformity. although there is a consensus on the importance of inclusive education, its interpretation and the programme of action will always differ (european agency for special needs and inclusive education 2017). we argue that the understanding of inclusion cannot be comprehended by disconnecting from other situations around the world as challenges to the actualisation of inclusivity are universal (armstrong, armstrong & spandagou 2010; walton 2015) whilst acknowledging different contextual realities. therefore, schools and governments should look at incidents in communities that perpetuate inequalities in order to understand features that promote exclusion (slee 2001). with this understanding, it is notable to explore the specific context of botswana. despite inclusive education shifts from a specific focus on special education to a broader focus that recognises disability as one aspect of diversity internationally, botswana still tends to operate from a standpoint of special needs. hence, botswana continues to establish special education units for students with disabilities in both rural and urban areas of the country (dart 2007; molosiwa & mpofu 2017). the most recent and first of its kind being the establishment of a special needs department at one of the tvet institutions to cater for students with mild intellectual disabilities. with this practice, botswana has neglected to recognise the broader conceptualisation of inclusive education and its subsequent reconsiderations as a unified education system. this failure also contradicts the conventional botswana inclusive education policy, which states that: [a]n inclusive education system is when special educational needs of young people and adults are met in mainstream pre-schools, primary and secondary schools, vocational training programmes, colleges and universities with appropriate teaching and support. (gob 2011:4) the existence of the inclusive education policy proves that there is a common understanding from policymakers in botswana, but that this is not necessarily being implemented in practice. the existing implementation demonstrates how botswana, despite the introduction of an inclusive education policy in 2011, has not shifted from the traditional view that the education of children with disabilities is only possible in segregation. we are of the opinion that given where botswana is operating from, inclusive education in botswana vis-a-vis the goal of international policy on inclusive education has remained a policy statement and has failed the expectations of the principles of inclusive practices (muzata et al. 2019). this challenge is not only to botswana but also a challenge faced in most of the southern african countries (pather & nxumalo 2013) that are failing to address barriers in the system that restrict the education of marginalised individuals including children with disabilities. the key challenge is the lack of understanding that inclusion is a flexible way to allow improved support in the education system, and it is not about merely identifying learners with special educational needs who are deemed to be educated separately. in terms of developments in the tvet sector, botswana like other african countries was compelled to respond to the global policies such as salamanca statement and framework for action on special needs education of 1994, even though the progress has been challenging (unesco 2015). the inclusion of marginalised communities and people in botswana follows the global pattern of action in response to development goal no. 4 and the efa (un 2015). sustainable development goal 4 speaks of ensuring inclusive education and equitable quality education as well as opportunities for all (un 2015). this goal aims at reducing barriers to skills development in tvet education (un 2015). in line with this goal, botswana is reported to have taken a stride to ensure the right to education of people with disabilities through its longstanding national policy on tvet of 1997 (mmolai 2019; ndzinge-makhamisa 2019), which originated before the sdgs. the vision of the policy is to provide access to vocational training with disadvantaged groups as a priority, and this stance tallies with botswana’s action measures on the implementation of inclusive education. botswana’s articulation of inclusive education refers to ‘an education system that includes and meets the needs of all, including those with special educational needs, those with life circumstances, health, stages of development or any other circumstances’ (gob 2011:4). one could understand botswana’s articulation of inclusive education and inclusion to imply that the society has obligations to take care of each of its members regardless of mental, physical, behavioural and emotional status. if botswana understands inclusion from a societal obligation standpoint, it is necessary to consider in more detail the policies that support this stand. policies guiding technical and vocational education and training in botswana botswana’s first policy on education entitled education for kagisano of 1977, the subsequent government paper no 2 of 1994 and the national revised policy on education (rnpe) have been instrumental in leading botswana’s education system in an inclusive direction. the policy recognised that botswana’s breakthrough to economic diversification is through vet. the rnpe advises that whilst the industry commits to specialised vocational education, the government should be in charge of primary vocational education. this initiative was viewed as the means to achieve economic diversification and become instrumental in addressing issues of theory and practice mismatch (pheko & molefhe 2017). the need for vocational education and training (vet) in botswana was impelled by the country’s economic history (mupimpila & narayana 2009; siphambe 2009), where vocational education was not viewed as a priority and educating for white-collar jobs (workforce in offices). educating for white-collar jobs meant a focus on theoretical rather than practical courses in many cases. in terms of inclusion, three policies promote inclusion and inclusive education in tvet. firstly, the vet policy of 1997, which calls for ‘increase in access to vet by making education inclusive and equitable whilst addressing issues of quality and cost-efficiency’. the second policy is the rnpe, which has a special provision for an education, which caters for children and young people including those with disabilities (republic of botswana 1994). the third is the inclusive education policy of 2011, which has 10 goals of which goal no 4 is significant to this article. it states that ‘action will be taken to improve vocational training for young people for whom the current system of vocational training is unsuitable’ (gob 2011:1). the adoption of these three policies did not, however, mean that these vulnerable groups would access education in practice. the enrolment of individuals with disabilities in tvet is in fact still minimal (efa country profile 2015). botswana’s educational development is interpreted with the national development plan (ndp), which usually run for 6 years. national development plans in botswana are reflective frameworks in which government checks signs of progress in the different sectors of the economy. therefore, it is not surprising that the objectives of the initiative of vocational education continue to change. the study informing this article took place within the ndp 11 plan. the ndp 11 plan commits to the following: improving human capital development improvements in the quality of education to increase the pool of skills in areas that have been identified as critical to improve the performance of the economy and and to ensure that all population groups in the country benefit from an inclusive education and training system. whilst the initial vision of tvet in botswana was for productivism, the reflection from the current national development plan (ndp) indicates that the development of human capital is significant to the economy. hence, the current status of vocational education is not solely government domain, as the growth of private vocational institutions is on the increase (richardson 2013; samboma 2017). not only is the current ndp objective to promote human development but embraces inclusion through inclusive education directives with the emphasis that everybody who has the right to education should be given the opportunity. the ndp 11 provides for the expansion of brigades and technical colleges (richardson 2013). brigades are community-led vocational schools, whereas technical colleges are government-led institutions of technical and vocational training. another government initiative that promoted an increase in formal access for people with disabilities was to earmark certain brigades and technical colleges to offer different programmes for different disabilities. this initiative enabled the admission of the first cohort of students with mild intellectual disabilities in 2012 to the technical college selected for this study. although this can be viewed as a positive step, the reality of the implementation of inclusive education on the ground seems to be rhetoric. there is still inequality and exclusion of marginalised students in botswana’s higher education (makwinja 2020). this supports the consideration of how tvet institutions practise inclusion. the practice of inclusive education in technical and vocational education and training admission of students with disabilities in the technical college selected for this study follows a process of interviews with candidates and their parents to discuss the educational psychologists’ report, which is a prerequisite for admission. suitable prospective students are then selected based on current ability levels and the perceived fit with the programme. there is, therefore, accommodation and modification in terms of the admission processes. the college initiative follows the country’s affirmative action framework (ministry of education and skills development [moeds] 2013), which has the goal to ensure that no one is left behind by admitting students regardless of test scores. current practice in the tvet college is to separate students with disabilities from the so-called ‘normal’ students so that classes for students with disabilities are offered separately. the separate provision is justified as allowing students with disabilities to learn at their own pace in order to have epistemological access. a pragmatic justification for separate classes is that students with disabilities doing hospitality operations have a separate kitchen where equipment has been modified. for example, stove handles have been lowered for any students in wheelchairs. some classes, however, are still on the second floor of a double storey building making them inaccessible to some, especially when the lifts are not working. whilst the college attempts to offer students with disabilities the opportunity of learning on their own, it simultaneously portrays a negative view of the students’ disabilities. on a different note, the college’s justification of this separation is that programmes for students with disabilities are below the level of what is offered in the same hospitality operations at diploma level for students without disabilities. this segregation has resulted in labels and othering of students in the department. at the same time, the label is seen by the management and policymakers in the ministry as a means to identify the educational needs of students with disabilities. what the college is experiencing resonates with the ‘dilemma of difference’. the dilemma of difference as coined by terzi (2005) and norwich (2010) is a choice between treating all students as the same so that no one feels different and provides similar support and resources or whether to label and treat students differently so that they can benefit from individualised support. besides the concern for students learning, the college is also faced with the operational mandate. that is, whether the department should be a service department in which it serves the educational needs of all students in the college or as a special unit focusing on the students in their section only. when students have completed a unit, the student’s disabilities are catered for through modification and enrichment of assessment. assessment is modified for those students experiencing difficulty and enriched assessment is provided to those for whom the materials are found to be too easy. this speaks of an inclusive assessment practice in which there is a ‘need to review and modify test items to ensure that they have maximum accessibility, without changing the properties of the test items’ (elliott, frey & davies 2015:2). more importantly, the assessment criteria determine whether students with disabilities have achieved the unit independently, with assistance or not achieved at all. this allows these students to be re-assessed until they can achieve. this is also part of an inclusive practice in which students are assessed for checking skills acquisition rather than grading so that students are not left behind. initially, students with disabilities at the tvet college were also socially separated from others as their hostel accommodation was separate from the rest of the student community. however, the current situation is that students with disabilities are paired with students without disabilities to promote social integration. positive results of the initiative include integrated sports where teams were formed and ultimately improved their sense of belonging. pairing students with disabilities with students without disabilities may, however, be reinforcing difference, labelling and othering. according to norwich (2010), there is a dilemma of identification. this dilemma means that the students may not be able to enhance their social skills because they are treated by the so-called normal differently but if they are identified according to the disability, it may help the college to secure what will benefit them. for example, the hostel doors were modified to allow wheelchair users. in practice therefore, it becomes clear that at the selected tvet college, formal access to the institution has been facilitated for students with disabilities, but the question of whether full inclusion beyond formal access is being achieved remains. literature review scholars in inclusive education have investigated the experience of teachers in implementing inclusion of students with disabilities in higher education as well as students’ experiences in higher education (kendall 2016; mutanga 2018; svendby 2020). it has become clear that the inclusion of students with disabilities is still a challenge as it continues to fail to afford students equal opportunities in learning. for example, svendby’s (2020) study reveals that teachers lack awareness of students’ disabilities and inclusive pedagogies in their teaching. this lack of awareness suggests that students have not been supported enough to reach their potential. if that is the case, it indicates that students with disabilities have been excluded from full participation in the learning. dolmage (2017) also observed that disabled students in higher education tend to be excluded from participation because of the assumptions of their ability. ableist assumptions tend to mark critical disabilities studies where individuals have the tendency of thinking and assuming the worst of students with disabilities. these assumptions come in the form of pigeonholing, stigmatisation and labelling (boyle & sharma 2015; svendby 2020). international literature has explored the inclusion of students with disabilities in higher education, for example in malaysia; yusof et al. (2020) express students’ voices on how they are not on par with their non-disabled students as far as learning is concerned. in the united kingdom, kendall’s (2016) study on the experiences of students in higher education reveals that whilst the number of students with disabilities continues to increase in universities, a number of issues that hinder their full participation still occur. in italy, in exploring the disability and italian experiences of inclusion, maggiolini and molteni (2013) observe that the focus of good inclusive practice does not lie on the students’ disabilities but on how institutions process inclusionary practices. it emerges from this research that underrepresentation of students with disabilities at higher education has improved (kendall 2016; maggiolini & molteni 2013; yusof et al. 2020) but the path to inclusion still needs further research. within southern africa, there is literature on the experiences of students in higher education (matshedisho 2010; mutanga 2015; mutanga & walker 2017; ndlovu & walton 2016). for example, matshidisho (2010:730) argues that ‘even though the experiences of disabled students have programmatic implications, their needs should not be isolated from other students’. we concur and reason that research focusing on one aspect of their life is detrimental to findings on the voices of their actual experiences in terms of inclusive practice. to show this emerging picture, studies performed in south africa indicate that there are numerous barriers still experienced particularly by students with disabilities resulting in limited professional skills amongst individuals with disabilities (ndlovu & walton 2016). mutanga (2018) also observed that instances of exclusion in two universities in south africa are apparent, for example, limitation in participation in academic programs of students with visual impairment and challenges of physical access to infrastructure. this demonstrates that challenges still exist despite new legislation and law governing the inclusion of students with disabilities. in terms of botswana, literature on published studies on experiences of students with disabilities at higher education seems to be limited. the synthesis of literature points to research focusing on one aspect of students with disabilities, for example, attitudes or perceptions (mokhuphadyay 2015; molosiwa & mpofu 2017; otukile – mongwaketse 2011). none of these studies, however, focused on higher education particularly tvet. the same has been observed in south africa by mutanga (2017) when he opined that ‘there is scant literature on the experiences of students with disabilities in south african higher education compared with other countries such as australia, the uk and the usa’ (p. 136). in the case of botswana, programmes for access to higher education of students with disabilities, especially in tvet, began in 2012 (mosalagae 2021), so literature exploring the experiences of the student would invariably be limited. hence, this article will contribute to the limited literature in this area. the problem statement studies focused on the tvet sector carried out in kenya by malle (2016), malle, pirttimaa and saloviita (2015), who investigated prevailing challenges and opportunities for the participation of students with disabilities in vocational education whilst murgor, changa and keter (2014) in ethiopia explored the accessibility of tvet amongst disabled people and reported barriers to the full participation of students with disabilities in tvet but did not explore issues of student experiences. some studies on inclusive education and higher education by mutanga (2015) in south africa and subbie (2014) in uganda focused on disabled students’ disabilities and experiences in higher education. in botswana, there are few studies performed in the area of inclusive education in higher education and tvet. there has been little research that explores students’ well-being and experiences. consequently, very little is known about how students with disabilities have experienced tvet education. these are the impelling motivations behind this study. purpose of the study given that there is little empirical research on the experiences of students with disabilities in tvet education in botswana, this study aims to develop an empirical understanding of the experiences of students with disabilities in tvet education. the purpose of developing an understanding of these experiences to determine whether inclusion in these tvet programmes has been beneficial to these students’ well-being and functioning. the capability approach is used as a theoretical framework to explore students’ experiences. we intend to build on current debates on the experiences of the inclusion of students with disabilities and contribute to the literature in this area. the following research question was posed: what are students with mild intellectual disabilities’ experiences of inclusion in the selected tvet institution in botswana? theoretical framework given the understanding of botswana’s conceptualisation of inclusion and inclusive education, which is the obligation of the society to take care of its members regardless of mental, physical, behavioural and emotional status, the capability approach was chosen to evaluate and assess the students’ well-being and how the social arrangements, resources and teaching practices have shaped their experiences of the tvet institution. the capability approach was used as a framework to help in conceptualising the students’ experiences and evaluate their well-being. the capabilities approach, pioneered by amartya sen and developed by martha nussbaum, is defined as a normative framework of well-being, human development and justice using functionings and capabilities (nussbaum 2000; sen 1992, 1997) and is considered not as a theory but as a moral approach (sen 1985). for the purposes of this study as a moral framework, it was suitable because in its evaluation it considers information out of the normative (robeyns 2005). that is, it captures non-utility information. for example, in this article, it considered the intellectual abilities of students, the moral and social issues, such as the humanitarian principle of appreciating them as persons first before their disabilities. the capability approach then endeavours to focus on how well a person is and what the person does to attain that wellness. wellness, in this regard, denotes the manifestation of what a person can do (functionings) with what he has (sen 1985). as a result, the approach does not cause so much concern itself with the possession of resources by an individual or the state (mental) that a person is in, but rather the freedom the individual has to arrive at what he or she has reason to value (sen 1985, 1992, 1999). nussbaum (2011) attests to the fact that the capabilities approach has two claims. firstly, the chief moral aim is freedom to achieve well-being. secondly, the very same freedom towards the achievement of well-being is to be appreciated in relation to the capabilities of people, that is, their actual chances to do and be what they have reason to value (nussbaum 2011). the expansion of human capabilities helps one to have agency, that is, acting and bringing changes to one’s life. central to the capability approach is the enhancement of capabilities; therefore the answer to finding out if inclusion in tvet is being fully realised lies in whether it was able to develop capabilities expected from higher education. the capabilities approach asserts that students with disabilities are capable beings (davis 2006; oliver 1996; shakespeare 2010), especially when they are given supportive and inclusive environments. sen (1999, 2000) argues that appropriate provision affords agency and enhanced capability. employing the capability approach was relevant as an analytical tool to provide a ‘mirror’ for reflecting on the benefits of tvet programmes in assisting students with disabilities to achieve well-being. based on student experiences, we were also interested in finding out practical ways in which tvet can expand the capabilities of students by considering the social arrangements (the institution, programmes, stakeholders and policies) to find out inclusive opportunities and unfreedom instances that were regarded as exclusions. the capability approach emphasises the evaluation of capabilities and functionings. in this article, we looked at relevant capabilities including educational resilience, social relation and social network, respect, dignity and recognition, knowledge and imagination and practical reasoning. we then indicated how they are related to experiences of inclusionary or exclusionary practices. for example, the experience of being loved, care for by others and a sense of belonging are experiences of capability of affiliation and that speaks to social inclusion. research methodology the study used a qualitative research design to investigate the experiences of inclusion of students with mild intellectual disabilities at one tvet college in botswana. the study used an interpretive phenomenological approach in which the ontology was to socially construct the participants’ meaning (male 2016; maxwell 2013). interpretivism was thus ideal for this study because it concerned itself with understanding the world as it is from the subjective experiences of individuals. this suggests that we sought to understand people in their role as social actors and that the original description of what inclusion meant from the participant’s view was captured verbatim without any alteration. adopting this stance for this study is supported by male (2016:125) who asserts that interpretivism is a ‘conceptualization process of how situations are meaningfully lived as they are experienced with nothing added or subtracted’. this shows that in the field of social sciences, truth is not final. the interpretivist design was appropriate for this study given the intention to uncover new thoughts, gain new understanding as well as increase knowledge of inclusive education. sampling one tvet college in botswana was selected as the site for this study using convenience sampling as it is one of the two institutions that offer programmes for students with disabilities. the participants were purposefully selected for the study to get relevant information for the study. purposive sampling is a subjective non-probability sampling in which participants are chosen through the judgement of the researcher (patton 2014). the experiences of students could not be attained from people other than the students themselves; hence, purposive sampling was relevant. participants were 14 students with mild intellectual disabilities who were enrolled in the hospitality program. these students were chosen on the criterion that they are students with mild intellectual disabilities and as the technical college admits this specific disability. a characteristic list was made to further sample participants based on the ability to understand both setswana and english, ability to communicate well, the chronological age of 18–23 years and programmes of study (in this case, hospitality operations). ethical clearance was obtained for the study from the affiliated higher education institution, and all procedural ethical processes were followed, including obtaining informed consent from all participants, ensuring anonymity and maintaining confidentiality. the following data collection tool was used to construct participants’ meaning of their experiences of inclusion at the selected site. in-depth interviews in-depth individual interviews were conducted with both the currently enrolled and graduated students’ participants. the interview was guided by a semi-structured interview schedule where questions focused on the participants’ experiences of inclusion and exclusion in the tvet college. the individual interviews were critical in having a ‘conversation with a purpose’ with participants. a semi-structured approach was adopted to ensure attention to critical key questions related to students’ experience of inclusion but also to allow for probing and elaboration of these responses. considering the realities that student meanings of experiences are different and unique to individuals, we found it essential to use individual interviews so that we could probe further and clarify participants’ meanings so as not to misinterpret their real experiences (rubin & rubin 2012). fourteen individual interviews with currently enrolled students were conducted. the interviews were employed to contextualise their meaning through their voices, and therefore they served as a space for understanding those voices (creswell 2014). these voices were audio-recorded verbatim and later transcribed. data analysis the study’s data analysis was informed by its epistemological position, which is to interpret meanings. we employed an iterative process of data analysis. an iterative process means that we had to look at the data as a whole through its parts and vice versa to ultimately come to a context in which the whole and the parts were embedded (smith, flowers & larkin 2013). with this process, we had to keep an open view of what the implication of the data might mean. for instance, data items were analysed individually looking at what students said, what it meant for each data set and ultimately what the interpretations were. this progression aided us to arrive at what holloway and todres cited in braun and clarke (2006) call ‘thematising meanings’. in the words of braun and clarke (2006:6), ‘thematic analysis is a method of identifying, analysing and reporting patterns (themes) within data’. prior to thematising, the following process was ensured. recordings from the individual interviews were translated verbatim from the vernacular to english, and the english versions were then transcribed. particular attention was paid to the individuals’ contextual experiences. engaging with data assisted us in extracting and identifying significant meanings as told by the participants. transcripts were manually coded following three steps. step one was to open the code drawing from the literature review to identify essential elements that could possibly make a pattern by comparing and categorising (saldaña 2013). the second step was the axial coding, looking at the causal relationships (saldaña 2013). in this step, a sequence of thematic codes was generated by employing the capabilities approach (affiliation, agency, freedom, capabilities and functioning). this follows neuman’s (2006) idea that at this stage a clear link between the concrete findings and the theoretical themes should be noticeable. thematic analysis was not limited to original themes but was flexible to patterns that came out and were helpful to answer the research question beyond the initial themes. the third step was selective coding, which helped to develop explanations and move beyond the descriptive analysis of the data. we looked for themes through the thematic latent analysis level. the latent analysis level demands that a researcher goes beyond the surface meaning but reaches themes through interpretations of the data by identifying features and ideologies that go beyond the meaning (braun & clarke 2006). for instance, in this study, we analysed interview extracts by not only looking at what the literature refers to as elements of inclusion but we also used information related to the research question and its relation to the capability approach. ethical considerations ethics clearance was obtained for the study from the university of the witwatersrand, reference number: 2017ece017d. results the results presented speak to the research question that sought the experiences of students with disabilities of inclusion and exclusion in tvet. the presentation of findings and discussion that follows considers experiences of inclusion and exclusion as grouped and classified from the interpretations of student’s experiences during thematic content analysis. table 1 shows how themes were arrived at by not just a description but also by theorisation after linking the research question with the theoretical framework. the presentation of findings is presented as two overarching themes, namely: (1) experiences of inclusion in tvet and (2) experiences of exclusion in tvet. table 1: examples of how themes were created. experiences of inclusion in technical and vocational education and training the experiences of students in relation to inclusion are summarised in figure 1, which shows indicators of how inclusionary practices were identified from the data. four key areas were identified, namely (1) social inclusion; (2) epistemological access; (3) formal access and (4) respect, recognition and dignity. figure 1: inclusion and inclusion indicators. the analysis showed that students experience some level of good inclusionary practices by being socially included. students reported having been able to interact with others socially and form friendships. the interpersonal skill modules helped them to live well with others and have reciprocal relations with some lecturers and the college non-academic staff. being enrolled in tvet gave the students epistemological access. here, students were given the opportunity of gaining new knowledge through accessing learning resources and lecturers knowing their profiles that helped with being scaffolded and remediated where necessary. the students also benefited from the integrated teaching that lecturers employed. integrated teaching between the vocational lecturers and the special educators enabled the students to be given attention and units objectives tailored to their profiles. in this way, students were able to access content that eventually gave them some capabilities achievement. new knowledge acquired shaped students’ aspirations for their future. box 1 demonstrates an example of these aspirations as expressed by student participants. box 1: student’s aspirations. some students were also grateful for the tvet experience because they felt a sense of belonging. they were able to live well and interact with others. this speaks to the capability of affiliation (nussbaum 2000). the achievement of this capability meant that these students were able to form social networks, which were instrumental in their forming learning groups, which helped with other capability achievements such as numeracy, literacy, ict and problem-solving skills to name a few. also being able to relate well resulted in students being able to accept their disabilities, eventually gaining confidence and self-esteem as well as being able to take risks without fear. social inclusion not only benefited students in forming networks for learning, it made a number of students feel welcomed and cared for by other non-disabled students and other peers with disabilities. ultimately, students could be recognised, respected and feel dignified. the feeling of being accepted was instrumental in students being able to appreciate tvet as it translated to formal access. formal access in the sense that nearly all students felt that the impediments such as not being accepted and treated well would have hindered their learning experience. therefore, barriers that impeded learning were removed. removal of barriers also meant that a good number of students were allowed to enrol in tvet, especially when special dispensations were made so that they may qualify to attend tvet. one of the dispensations was that students were not subjected to entrance examinations. box 2 demonstrates examples of these experiences as expressed by participants. box 2: students’ experiences of inclusion. experiences of exclusion in technical and vocational education and training whilst some students experienced the above-said inclusionary practices, many also experienced forms of exclusionary practice. this is not surprising as literature reviews indicate that where there is inclusion, there is also exclusion (ainscow, booth & dyson 2006). figure 2 demonstrates exclusionary practices and its descriptors as identified from data analysis. figure 2: exclusion and the indicators. at times some students felt epistemologically excluded when certain lecturers failed to help them engage with content. for example, some students were afraid to tell their lecturers when they had a problem with content because certain lecturers were impatient with students. some lecturers used abusive language, which resulted in students not wanting to come to class or feeling intimidated. in such instances, affected students revealed that they resorted to not asking questions and not participating in class. box 3 captures student expressions of these experiences. box 3: student’s experiences of exclusion. some students reported that one particular lecturer used to suspend teaching them as a punishment when she found fault with them. they experienced this as an unfair punishment measure. students believed that this suspended teaching was used for them because they were ‘special needs’ students. students cited incidents where they were punished for not knowing that there was a class by coming to class and then not being taught. at times, students also felt silently excluded because they were in class and college and yet not epistemologically benefitting. silent exclusion (lewin 2009) refers to enrolling students in schools, yet little learning is taking place in the classroom. this results in constrained engagement with the curriculum as students are physically present but not supported to access knowledge (walton & bekker 2013). another exclusionary practice experienced by students was marginalisation. data showed that students were denied free movement in the college as all participants reported that they were restricted to the hostels only and particularly barred from making friends with students without disabilities. whilst this restriction occurred in the college, it was, however, a practice of a particular member of the department. she threatened students without disability that they would be taken to task if they befriended students with disabilities because it was ‘not allowed’. in contrast, students with disabilities were threatened that they would be expelled from college if they were seen with non-disabled students. the fear that was instilled in students resulted in them keeping to their hostels. from a capability approach perspective, this kind of practice meant that students were denied the capability to take control of their environments (nussbaum 2000) as they had no freedom of association. they were also not allowed to go outside of college independently. students were only allowed to leave campus with the permission of their parents who then needed to come and collect them from college. this practice was not welcomed by students who felt that they were caged, and their independence was taken away from them. this is also contradictory to what they are being taught in curriculum regarding independent living. at the same time, students felt that they existed between two personas as, when they are outside college, the society treated them as abled persons whilst in college where they are supposed to grow, they were treated as ‘babies’ or ‘little mice’. box 4 provides examples of students’ expression of these experiences. box 4: student’s experience of labelling. besides being deliberately restrained by the department rules, some students also reported the use of language of marginalisation. they were called by names by some lecturers and other students without disabilities. these name callings affected the students’ self-esteem as they reported that they saw themselves as those names and ended up believing that they are indeed what those names mean. for example, being called ‘special need’ meant that they are exceptionally not normal hence ‘special’. according to mcdaid (2008), often people with disabilities are perceived in terms of the challenges they have without considering their overall contribution in the society and many times they are understood as dependent on others as well as incompetent. labelling or not labelling in the field of special education is debatable. however, the special educational needs and disability act of 2001 (senda) and the special education law of 2004, which was renamed the individual with disabilities education act (idea), allow labelling if they are meant to categorise an individual so as to address their educational needs for their individualised learning programs (boyle 2014; boyle & sharma 2015). on the contrary, given the stigma generally allied with labelling individuals, it has been argued that labelling usually ignores the need of the individual and focuses on pathological tendencies (goodley 2001). this suggests that labelling or categorisation is supported in legislation, where the intention is the provisioning of support, but that the practice of doing so may result in the experience of stigma for individuals so labelled. whilst labelling in inclusive education is not something new (boyle 2014; boyle & sharma 2015), we argue that the policy landscape and school system socially constructed the labels, which the collegiate community adopted and used to refer to these students. in other words, the use of the word ‘special needs’ became an institutional practice, which was exclusionary in nature. becker’s (1963) labelling theory suggests that labels serve as special markers, which are used to identify and classify particular students in institutions or society. although labelling to other scholars (booth & ainscow 1998) is to recognise differences and confer social salience to those differences (arishi et al. 2017), in the context of this study, some students experienced labelling as a discriminatory practice despite it being used by the department for the purpose of special educational provision. studies have shown that marginalisation goes hand in hand with stigmatisation. a study by mcdaid (2008) showed that professionals are also amongst the populations that stigmatise within their profession. this was the case with this study, where students were stigmatised by their lecturer who dehumanised them verbally, physically and emotionally. evidence of this is provided in student statements in box 5. box 5: student’s experience of marginalisation and stigmatisation. some students were labelled and deemed incompetent. one of their lecturers communicated low expectations of them instead of having a positive attitude, which could have countered collegiate community negativity. the stereotyping that some students experienced resulted in them being categorised and pigeonholed. this labelling increased the distance between provisions that students were afforded. for instance, some students without disabilities treated students with disabilities as not equal to them. the behaviour yielded sexual abuses with the belief that students with disabilities would not be able to reason and identify their perpetrators. not only was a student with disabilities sexually abused, but some students with disabilities were also taken advantage of in terms of their possessions. furthermore, outside people masquerading as churches and insurance people wanted to rob them of their allowances. box 6 shows some of the excerpts that demonstrate these experiences. box 6: student’s experience of consequences of negative stereotyping. negative experiences such as these hindered students’ well-being achievement by limiting their opportunities for expansion of capabilities. it becomes clear that both inclusionary and exclusionary practices were experienced by students with disabilities in tvet. of the two practices, exclusionary practices were noted more than inclusionary practices in terms of references made by students during interviews. this suggests that tvet is struggling with the implementation of inclusive education suggesting that inclusive policy is not fully realised in practice. discussion the result of the study reveals that both inclusionary and exclusionary practices were simultaneously experienced by students with disabilities in tvet. this supports sayed, soudien and carrim’s (2003) assertion that inclusion and exclusion are two concepts that are not competing paradigms because of their connection. data show that the experiences of students were as unique as their own differences as individuals. some students experienced inclusionary practices as shown by data examples of living harmoniously with other non-disabled students and the collegiate community; forming friendships and teamwork in learning, gaining new knowledge and skills from the course they were pursuing; new dreams for their future because they have been empowered and skilled as a result of good teaching methods, good resources and a conducive environment of learning. we are of the view that such results imply that from a lens of inclusionary practices, students experienced epistemological access and social inclusion. the contribution of the capabilities approach to this result indicates that tvet had given students opportunities to learn. in the process, students’ acquired capabilities of affiliation nussbaum (2000); or social relations and social networks (terzi 2007; walker 2006); sense, imagination and thoughts (nussbaum 2006) and practical reasoning (terzi 2007; walker 2006) were also gained capabilities. therefore, in terms of tvet education, the capabilities acquired showed the real opportunities that were needed to assist students with what they are able to do and have reason to value (nussbaum 2000; sen 1999). of equal significance, however, are the participants’ experiences of some elements of exclusionary practices. these experiences were exemplified by the social and academic suppression students experienced at the hands of the institution and from other students, some restrictions to making friends, being barred from interacting, negative stereotyping, labelling and discrimination. the concern for some students was that whilst they appreciated the skills acquired, they felt that their voices were not heard. from a capability approach analysis, students’ agency freedom was trampled upon. agency is associated with the capability to make choices. therefore, students would feel included if they were given the opportunity to choose what they want to do and that which they have reasons to value. experiencing exclusionary practices means that some capabilities such as control over one’s environment (nussbaum 2000), emotional integrity (walker 2006); respect, dignity and recognition (walker 2006) and physical activities (terzi 2007) were not expanded. the formal access to an institution, where it does not also translate to access to education as a capability, is a restriction to functioning and hinders the development of other freedoms. this means that tvet institutions should create learning environments that respect students’ voices and support their freedoms to enable them to achieve their potential. the expectation is that higher education exposes all students to opportunities that promote their integrity as people who matter in society. the experiences of the students highlight how the college environment created both inclusionary and exclusionary practices towards them. exclusionary practices result in a lack of emotional integrity, which can affect other domains of student development. the effects of a disabling environment are that in terms of measuring the happiness level of the students in tvet, they were not in a happy environment. from a capability approach perspective, the scenario indicated that the student’s well-being achievement was limited. ultimately, this hindered their capability to be educated. as argued by unterhalter (2003), schooling, social opportunities and the development of reasoning are instrumental in capability development, and when people have those equal opportunities, they are bound to have a fair share of human agency. in the final analysis, the findings have highlighted some of the challenges faced by tvet in realising the goal of inclusion of students with disabilities and demonstrate that tvet is struggling with the implementation and practice of inclusive education. the following are the recommendations to consider in creating opportunities for students to have reasons to value their beings and doings. recommendations given the above discussion, we recommend the following: there seems to be a gap between the understanding of inclusion as indicated in policy and the actual practice of inclusion in education in botswana’s tvet system. we recommend that policymakers should engage with stakeholders who implement policy. this would support botswana to have an identified philosophy and paradigm common to both policymakers and implementers to operationalise the implementation and practice of inclusive education. we recommend continued institutional evaluation and engagement with developing inclusive strategies that can work within their context such as reconciling learning with the values of inclusive education rather than traditional special education. for example, having lecturers take surveys and keep journals to identify what has or has not worked for the institution would foster increased awareness. developing a culture of responsiveness to individual student needs would support lecturers to select inclusive strategies suited to actual needs rather than offering preconceived notions of special education support. institutional culture shifts in the way students with disabilities are viewed so that empowering strategies such as developing students’ agency, and freedom may be used to curb pigeonholing and labelling. this can be achieved if students with disabilities are given more opportunities to become active agents and participate socially, politically and educationally rather than limiting opportunities based on stereotypes of ability and capability. the educational experiences of students in these institutions should be a source of what tvet needs to consider particularly in identifying what can be aligned to the human development approach. practically, this can be attained by providing more opportunities that improve students’ quality of life by improving tvet central spaces through focus on agency development for students with disabilities. this would support creating a favourable environment at institutional level and may be a first step in enabling policy ideals for inclusive tvet to be realised in practice. it is also clear from the study that lecturers and students without disabilities were instrumental in the success or challenges of inclusionary and exclusionary practices. it is recommended that the institution and department should support lecturers and students without disabilities to change their mindset about inclusion, where this is exclusionary and draw on the support of those lecturers and students without disability who already demonstrate inclusionary practices. for example, facilitating inductions and workshops about disability issues before students with disabilities arrive in college and also as an ongoing staff and student development throughout the academic year so that they become a support system for students with disabilities and instrumental stakeholders in implementing the inclusive education agenda. conclusion this article has reported on 14 in-depth interviews with students with mild intellectual disabilities about their experiences. drawing from their interpreted experiences, the interviews revealed a parallel occurrence of both inclusion and exclusion indicative of an institution indistinct about policy implementation. the capability approach used helped us unpack the social arrangements that supported inclusionary practices in the institution and that, therefore, promoted capabilities. the capabilities that inclusionary practices promoted included learning disposition; practical reasoning; respect, dignity and recognition; social recognition and development of social networks. inclusionary practices, therefore, afforded experiences of, amongst others, affiliation, social and epistemological inclusion. in contrast, the approach also revealed undeveloped capabilities such as voice, control of one’s environment, emotional integrity and physical activities associated with being excluded. therefore, parallel to the experience of inclusion was the experience of exclusionary practices such as marginalisation, labelling, oppression and stigmatisation. capabilities are simply opportunities to choose and therefore if students with disabilities have limited opportunities to choose, exclusionary practices are perpetuated, agency and freedom undermined and functioning underdeveloped. failure to create and develop capabilities is a form of injustice and inequality, which is an exclusionary practice and undermines the realisation of inclusive ideals in tvet. the picture that emerges is that the tvet institution under study appears to be struggling with the implementation of inclusive education. it is recommended that tvet should take note of the exclusionary practices identified and work towards equalising resources and capabilities whilst continuing to build on the observed inclusionary practices. in this way, students with disabilities may have improved opportunities and abilities to value what they have reason to be and do and ultimately have their well-being achievement realised. acknowledgements the authors acknowledge the participants of the study and thank them for sharing their experiences. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions this article reports on one aspect of a larger ph.d. research study conducted by the first author m.m. submitted to the university of the witwatersrand under the supervision of t.l.b. both authors discussed the findings reported in this article and contributed equally to the final manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability derived data supporting the findings of this study are available from the corresponding author, t.l.b., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references ainscow, m., booth, t. & dyson, a., 2006, improving schools, developing inclusion, routledge, london. arishi, l., boyle, c. & 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communication and advocacy, hope social union for the visually impaired, bamenda, cameroon agbor a. agbor junior department of sociology and anthropology, faculty of social and management sciences, university of buea, cameroon department of medical sociology, anthropology and psychology, faculty of health science, experiential higher institute of science and technology, yaounde, cameroon lynn cockburn school of rehabilitation science, faculty of science, mcmaster university, hamilton, ontario, canada citation kesah, n.p., che, w.r., junior, a.a.a. & cockburn, l., 2024, ‘delays in education and leadership for youth with disabilities: lessons from the tamtam project’, african journal of disability 13(0), a1323. https://doi.org/10.4102/ajod.v13i0.1323 community paper delays in education and leadership for youth with disabilities: lessons from the tamtam project nfotoh p. kesah, wanka’a r. che, agbor a. agbor junior, lynn cockburn received: 29 aug. 2023; accepted: 06 nov. 2023; published: 24 jan. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction ensuring access to education for students with disabilities requires collective efforts from governments, teachers, parents, and students themselves (unesco 2019). there are variations in educational trajectories for people with disabilities in africa, and students with disabilities in african settings are often denied education or have their education delayed because of many factors (engelbrecht et al. 2016; okyere et al. 2019; unesco 2019). for example, despite active governmental efforts in tanzania, difficulties still exist between rhetoric and reality (adugna et al. 2022; braun 2020), and many students with disabilities are either not in school or have less than optimal experiences. in low-income african nations, young people with disabilities can be confronted with several potential problems in adapting to their impairments (un department of economic and social affairs 2019). emotional adjustment can be related to living with impairments, family supports, experiences of discrimination, adopting a ‘disability’ identity, and the socioeconomic ramifications of becoming people with disabilities. in addition to these factors, dropout rates from university level education are affected by substandard housing environments, community opinions that persons with disabilities do not require education, terrain that is difficult to navigate, and cultural beliefs ascribing disability to wrongdoing. individual experiences and responses are likewise distinct, reflecting the multifaceted nature of each person’s situation. researchers in african universities are beginning to investigate these disparities (mckinney & swartz 2014; molteno et al. 2002). this article stems from work in cameroon, where laws and frameworks for inclusive education have been introduced with very slow follow up and implementation (cockburn et al. 2017; ndjouma 2020). the right to education has not been realised for persons with disabilities in cameroon, with approximately one in every 10 children with disabilities having a chance to attend school and few schools having adequate systems in place (tah & mufuh 2018). despite some government actions taken to increase access and inclusion in some government schools, it has been estimated that 9 of 10 children with disabilities in the country did not attend school (tah & mufuh 2018). although improvement in policies, teacher training, and increase in enrolment of students with disabilities are beginning to show (cockburn et al. 2017; mbibeh 2013; opoku, mprah & saka 2016; tcheimegni 2018), it is clear that many cameroonian children with disabilities still either start school late or never have access at all (sightsavers 2022; wodon et al. 2018). the prime ministerial decree of 2018 stated that law n° 2010/002 on the protection and promotion of persons with disabilities should be put into effect. articles 4 and 5 of the 2010 law call for children with disabilities to have equal access to mainstream schooling and vocational training programmes, and that teachers are expected to maintain high standards, including learning sign language and braille. the government of cameroon recently announced a new policy which recognised that youths with disabilities face barriers in attending school, and subsequently applying for government positions. therefore, they now permit persons with disability cards an additional 5 years – from 30 years to 35 years – to apply for competitive entrance to civil service, recognising that it can take them longer to complete school (government of cameroon, 19 may 2022). the tamtam project of the hope social union for the visually impaired the hope social union for the visually impaired (hsuvi) is a cameroonian, non-governmental association of persons with visual impairment. hope social union for the visually impaired focuses especially on areas such as employment, policy formulation, and general human rights. in 2022, hsuvi was funded for a project to develop leadership attitudes and skills in youth with disabilities from all parts of cameroon, called tamtam leadership project. the goal was to develop leadership abilities in youth with disabilities using a ‘train the trainers’ model. specific skills included advocacy, how to mainstream disability in sectors such as media and education, how to develop inclusive businesses, and engage in community development through effective participation and representation. the first group of trainers were 22 university students with disabilities aged 18 to 25, from all 10 regions of the country, who participated in a 2-day in-person training workshop, with before and after support and resource material. they then returned to their home regions to train others. the objective of this model of training was to have a meaningful impact for the youth with disabilities themselves, many of whom had limited life experiences, so as to model the changes that were desired. when these youth leaders returned to their home regions, they hosted similar workshops for other youth with disabilities. as we implemented the project, the initial goal of having youth in this age range did not appear to be achievable. during the recruitment process, the organising team observed that many of the youth applying or being proposed were older than the targeted age of 25 years. the planning team began to explore the situation and had many discussions about it. in doing so, we realised that there is little published work to address the issue of age in disability experiences in cameroon, and in other parts of africa. we also recognised that there are gaps in the literature explaining why youth with disabilities are delayed in their education in cameroon (cockburn et al. 2017; iced report 2014). this article is a result of these discussions, including reflections on the new policy, and was part of the programme evaluation process for the project. therefore, the purpose of this article is to explore the situation and the evidence related to why youth with disabilities are older when entering and going through the education system in cameroon. we anticipate that although we focus on cameroon, the findings will have implications for other african settings. the goal is to assist non-governmental organisations to consider effective strategies for the inclusion of people with disabilities in youth-oriented programmes. methods once the general need for more understanding on the topic of age delays for students with disabilities was identified, we expanded our search for relevant information. the information for this article comes from a review of documents, including legislation, scholarly articles and popular media (e.g. blogs, newspapers), and the discussions with the tamtam leadership group. the tamtam leadership incorporated a detailed and extensive programme evaluation during the 1 year of its operation (2022). as it was part of the programme evaluation process of the tamtam, and we are not using any specific information from participants, research ethics was not required. information about participants and their evaluative feedback were collected through google forms at point of application, acceptance, and after the training workshops. these forms collected demographic and other information about participants including age, current organisational affiliations, personal goals, and leadership experiences. we found that there were many challenges, which prevented university students from applying and participating, which we have divided into four themes. ethical considerations we did not apply for a waiver for ethical consideration because it was not a research study. the primary purpose of the project was to provide a programme. this article is based on some work that occurred to assess the functioning of that programme in order to improve it going forward. publication was a secondary goal. results and reflections from gathering the applications: what happened? theme 1: in all of the regions, there were many barriers resulting in relatively few applicants. the tamtam project targeted universities because they have established associations of students with disabilities, and we estimated that many of these students would be interested in leadership training opportunities. we are aware of the barriers facing youth with disabilities to even get to higher education, but we decided to focus on university because of the potential for these students to have the skills to replicate the workshops in their own communities. it is resource intensive to attend school (e.g. time, money, personal energy) and students have little extra resource for other activities. several students (or their parents) did not have the confidence that they could travel out of a familiar area. some students did not have the necessary mobility devices such as wheelchairs or tricycles, and so could not travel long distances to participate. some have to be carried or have additional medical needs and costs, reducing their interest in leaving their home area where they have trusted care providers. the tamtam project tried to address some of these concerns by providing individualised support to participants through phone calls and whatsapp messages and covering the cost of transportation. many talked about the extra costs for transportation (e.g. a taxi might charge double to carry a person with a disability), and even though these costs would have been covered by the programme, they were reluctant to take the chance of getting stranded along the way. some students reported that they did not apply because they could not access the application form because of a lack of devices or skills to complete the application, and they did not have anyone to support them to do so. finally, there may be other reasons that we are not aware of, which prevented students from applying. theme 2: many people disregarded the age criteria and applied even if they were over the age. many of the applicants for the centralised training were above the age range, including several who were over 30. the organisers were then faced with the dilemma of what to do – reject them outright or adjust the acceptable age range. in addition, a small number did not provide an age, and we had to follow up with them. in doing so, we found that some applicants were angry with the programme that an age limit was imposed, and stated that they wanted to apply even though they were over 25. from talking with these applicants and others, we learned that they felt they did not have opportunities when they were younger (they were not previously included in such workshops), and they now wanted to participate. the number of applicants from the over 25 group showed that there is a significant need for this kind of training and engagement among older students and community members. we think this interest also reflects the shortage of work and training opportunities for people with disabilities. theme 3: the leaders in the groups know only a portion of youth with disabilities in their universities and communities. each region was set up to recruit youth, mostly through partnerships with student organisations in the university systems. we know from anecdotal reports that many students with disabilities are not members of associations, and might try to minimise or hide their disability because of stigma and discrimination. in addition, perhaps the communication between and within the associations was not convincing enough to motivate student members to submit their applications for the training. universities also often do not have good records of students with disabilities. theme 4: a lack of a culture of youth leadership and the possibility for youth with disabilities to see themselves as leaders. anecdotal reports were that many youth with disabilities either directly said they are not interested in leadership training opportunities because they do not see how it will benefit them personally (e.g. they do not see it leading to employment), or the community leaders in some areas did not fully believe that students could be leaders. for example, regional committee members in the littoral region said that very few people applied for the training because they did not think it would benefit them enough. in this region, there did appear to be more interest with older youth, perhaps because they had more experience and could see the broader benefits. it was also suggested that the general lack of self-esteem that many youth with disabilities have could impact their willingness to participate – if youth do not see themselves as even being potential leaders, they would not try. youth might also see themselves as people to be taken care of, not as leaders, and feared that if they participated, they might lose some of the current support received from others. putting it all together: what does this experience show? youth with disabilities continue to be marginalised, in the broader community, in university settings, and even in the disability community. the experience from this project suggests that it does take longer for some people to accept opportunities, to go through school, and to become leaders. we have learned to think carefully about putting age ranges for programmes for ‘youth’ with disabilities. in the end, we had several participants in the 26 to 30 age range, and a few who were even older. depending on their goals, some programmes might want to consider having ‘younger youth’ and ‘older youth’ categories. while inclusion of persons with disabilities by age consideration may be sufficient for the protection and mainstreaming of disability in some programmes, we believe that other programmes may require more than just the prerequisite of age consideration to provide equity in access and opportunities for leadership and participation in community actions to youth with disabilities in cameroon. thus, our experiences suggest that programmes need to carefully think about and develop a rationale for age criteria when setting up programmes. acknowledgements the authors would like to start by acknowledging the support provided by the united states embassy in cameroon through the department of social and cultural affairs, which provided us with the funds to implement this project. they would also like to acknowledge the unwavering contribution of mr. samuel nyincho, mr peter tonain, the board members and project advisory group of the hope social union for the visually impaired, the recipient organisation of the project. these people greatly contributed to the conceptualisation of the project and provided technical supervision for its implementation. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.a.a. junior as co-author of this article contributed in the writing and editing of the document, formal analysis and with the investigation, which led to the findings. n.p.k. contributed to the development and implementation of the programme and the original article and edited the article including the analysis and the discussion. w.r.c. contributed to the original programme, the original paper and edited the paper including the analysis and the discussion. l.c. provided assistance with the conceptualisation and writing the original draft and the edits of the article. funding information this article is based on a project that was funded by the us embassy in cameroon. the writing of the article received no specific grant from any funding agency. data availability the data supporting 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johannesburg, south africa citation pilusa, s.i., myezwa,h., potterton, j., 2022, ‘services and interventions needed to prevent secondary health conditions throughout the life span of people with spinal cord injury, south africa’, african journal of disability 11(0), a881. https://doi.org/10.4102/ajod.v11i0.881 review article services and interventions needed to prevent secondary health conditions throughout the life span of people with spinal cord injury, south africa sonti i. pilusa, hellen myezwa, joanne potterton received: 16 apr. 2021; accepted: 01 jan. 2022; published: 11 nov. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: current evidence suggests a need for a care model that supports the prevention of secondary health conditions in people with spinal cord injury. multiple complex factors influence the prevention of secondary health conditions. there is a need for holistic and systems-based prevention approaches, which target multiple levels. objective: to identify the services and interventions needed to prevent secondary health conditions throughout the life span of people with spinal cord injury. method: we used a descriptive qualitative approach. data was collected using focus group discussions with professionals in the rehabilitation field. the recorded group discussions were transcribed verbatim, and content analysis was conducted. results: four focus group discussions were conducted. four themes emerged from the analyses: patient-centred care, access to resources, promotion of health, and skilled healthcare workers. conclusions: the suggested services and interventions needed to prevent secondary health conditions target the individuals with spinal cord injury (sci), health providers, health systems care approach and other sectors outside the health system. these services and interventions will inform the development of a preventive care model. keywords: spinal cord injury; model of care; prevention; secondary health conditions; secondary complications. introduction holistic care and prevention of secondary health conditions (shcs) are unmet needs for people with spinal cord injury (sci). living with a chronic health condition, such as a sci, increases the risk of comorbidities such as non-communicable diseases and shcs such as pain, pressure sores, and bladder and bowel problems (jensen et al. 2012; rimmer, chen & hsieh 2011). secondary health conditions have a significant impact on the individuals’ health (pilusa, myezwa & potterton 2021), work productivity (callaway et al. 2015), inclusion (fuseini, aniteye & alhassan 2019), and they eventually worsen the primary disability (richardson et al. 2019). preventing and managing shcs is a life-long commitment that requires continued support and interventions to minimise their occurrence. there is a need for a comprehensive care model that can support prevention care for shcs and address multiple and complex factors which influence prevention care. evidence on the prevention of shcs has looked at isolated interventions, which tend to be linearly oriented, assuming that single interventions (e.g. patient education) in isolation will improve health outcomes (tramonti, giorgi & fanali 2020; world health organization 2009). systems thinking approaches to patient care are promoted because they address the whole system, the linkage between the different influencing factors, system behaviours, and encourage multilevel strategies (atun 2012; world health organization 2009). examples of care models that have incorporated systems thinking to improve health outcomes are the expanded chronic care model (barr et al. 2003) and the system of prevention framework (sims & aboelata 2019). the expanded chronic care model (figure 1) is a framework used to design interventions for managing chronic diseases, by incorporating population health promotion principles in the health system organisation and community (barr et al. 2003). the system of prevention is a framework that guides the development of sustainable prevention approaches to produce better health outcomes (sims & aboelata 2019). figure 2 presents the elements from both the expanded chronic care model and the system of prevention framework. both the expanded chronic care model and the system of prevention framework emphasise the role of health influencing socio-ecological factors, multi-sectoral collaboration and promote multilevel strategies to address complex health problems. figure 1: elements of the expanded chronic care model. figure 2: elements of the expanded chronic care model and the system of prevention framework. good health among people with disabilities is a fundamental right central to attaining sustainable development goals (sdg) (united nations 2006; world health organization 2017). to promote health and well-being among people with sci, we need services and interventions designed to minimise disability and improve access to comprehensive health services. in response to the who rehabilitation 2030 call to action to develop need-based and comprehensive rehabilitation service delivery models (world health organization 2017), this study aimed to identify the services and interventions needed to prevent shcs across the life span of people with sci. the specified services and interventions can inform the development of a shcs prevention care model. methodology study design a descriptive qualitative approach was adopted using focus group discussions. the advantage of using focus group discussion is that discussion and dialogue on ideas specific to the study question can be facilitated. context the public health system in south africa is overburdened, serving 84% of the population (mayosi & benatar 2014). it is mainly medically oriented, with less focus on rehabilitation care (morris et al. 2019). an injured person is admitted to a district or tertiary hospital and subsequently referred to the specialised rehabilitation hospital if there is bed space. there are three public specialised rehabilitation hospitals nationally, which results in certain provinces having to transport patients with sci to regions with a rehabilitation hospital. after discharge, patients with sci have to travel to the rehabilitation hospital for medical care, consumables and medication because the primary health facilities sometimes lack specific medicine and competence to manage sci and shcs (maart & jelsma 2014; sherry 2015). post-discharge care in the community is minimal due to scarcity of health professionals at primary health clinics, lack of transport and the lower priority placed on rehabilitation care (morris et al. 2021; sherry 2015). participants a purposive sample that includes academics specialising in neurology, public health and social work, a non-profit manager for people with disabilities, rural-based physiotherapists (one runs a disability non-profit organisation), one rehabilitation hospital manager and two provincial rehabilitation managers were recruited. data collection all the group discussions were conducted online in july 2020 using microsoft teams by the primary author and a research assistant. the principal researcher conducted a pilot study with three academics specialising in public health, neurology and spinal cord rehabilitation to clarify the research questions. pilot study data were included in the analysis because there were no changes to the research question. in the focus groups, the aim of the study was explained to the participants. the participants were asked to respond to the question, ‘which services and interventions are needed to prevent shcs throughout the life span of people with sci?’ all the participants were allowed to ask questions to ensure that everyone understood the research question. data analysis a qualitative design software, maxqda version 2018.2, was used to manage and analyse data. all the group discussions were audio-recorded and transcribed verbatim. content analysis was conducted whereby the text was divided into meaning units, formulating codes, categorising similar codes, and identifying emerging themes (erlingsson & brysiewicz 2017). the first author read the transcripts to gain a general sense of the discussions. the transcripts were coded both inductively and deductively. codes were grouped into categories and subcategories. a preliminary coding framework was developed and reviewed by all authors. the primary author coded the rest of the transcripts deductively; similar codes were grouped into categories and themes. the other authors reviewed the categories and themes. trustworthiness credibility was achieved through audio recording the focus group discussions and holding debriefing sessions with experienced researchers in qualitative research design throughout the research process. for transferability, the study context was described in detail. for dependability, the author kept an audit trail of the research process and explained the methodology in depth. ethical considerations all participants gave informed consent and permission to record the discussion. the study was approved by the human research ethics committee of the university of the witwatersrand (reference number: m170938) and the south african national health research database (reference number: gp201712036). results the authors conducted four focus group discussions with professionals experienced in rehabilitation. table 1 presents the participants’ demographic profile. table 1: demographic profile (n = 16). section b: qualitative data analysis results four themes emerged from the analysis: patient-centred care, access to resources, promotion of health, and skilled healthcare workers. patient-centred care the participants highlighted the importance of patient-centred care in the prevention of shcs. care needs to be holistic and must include physical, mental, spiritual, and social aspects of health: ‘what is critical is the issue of participating in excursions, in sports, in a whole lot of activities that would improve the mental and the physical as well as the spiritual well-being.’ (participant 10) ‘… to prevent isolation which leads more into all these secondary complications … try to find ways of re-integrating people with spinal cord injury back into the community and have them play active roles in society.’ (participant 13) the participants also commented on the importance of continuity of care. patient care needs to be continuous through follow-up care, conducting home visits or seeing patients in the outpatient department to monitor the patients’ health and identify risk factors for shcs: ‘different facilities can incorporate follow-up visits, maybe once in three months or once in six months … to monitor, screen and see how the patient is progressing and if there are any risks and secondary complications that are arising later in the rehab process.’ (participant 14) ‘follow-up contact … either the person with sci is coming to the hospital or a home visit so that we detect the emergence of complications early on and intervene before it is too late. we know how pressure sores can accelerate at a very fast pace, so if we pick that up early on, we can then put in intervention measures.’ (participant 16) the participants emphasised the importance of collaboration between health professionals from many disciplines in sci care: ‘the most important thing in spinal cord injuries is the multi-interdisciplinary approach … if no doctor is qualified to talk about bowel and bladder management, then the system falls shut because you cannot expect a physio to take that responsibility.’ (participant 4) ‘at an institutional level to have a good inpatient care foundation before we can have the patient discharged and going to the community where we have an inter-disciplinary approach with the patient and not have all the health professionals doing isolated prevention interventions.’ (participant 12) promotion of health promoting health through building personal skills, support systems, and health-promoting policy is vital to the prevention of shcs, as highlighted by the participants. building personal skill: in terms of building personal skill, the importance of educating the patients and family on sci, shcs, early signs of shcs and healthy living was expressed by this participant: ‘educate the patient and the family for early warning signs for incontinence, wheelchair maintenance, what pressure sores look like in the beginning phases before it becomes a pressure sore.’ (participant 3) besides educating on shcs, health information could include topics on unhealthy lifestyles: ‘so there is the need to educate about obesity, not eating properly, alcohol or substance abuse to cope with the disability.’ (participant 7). but the timing for education is essential: ‘sometimes you want to teach the patients with sci about prevention when they have not yet accepted the injury, and you find that they don’t remember it five weeks from now.’ (participant 12) other skills necessary for enhancing well-being included self-management and coping skills, as expressed by this participant: ‘strengthen self-management … so that a person can take care of themselves. just equipping them with the skills that they need to prevent this complication so that they can do them themselves in case there’s no one around at that time.’ (participant 13) ‘empower patients with stress management and coping skills.’ (participant 7) support system: many participants reported how a strong support system through family, peers and the healthcare system helps with shcs prevention. ‘looking at the immediate family home … is it conducive for prevention, or does it lead them to have the secondary health conditions? yes, we might not have the capabilities actually to change that, but once we understand the social standing, we can also include that in the prevention model.’ (participant 12) the participants mentioned how peer support through sharing experiences and health information could help people with sci prevent shcs: ‘… have peer supporters or peer counsellors that speak to the patients about pressure sore and how long it usually takes to heal just so that they have feedback from somebody who has experienced it.’ (participant 12) lastly, the healthcare system at all levels was identified as a possible source of support when rendering responsive care: ‘also, ensuring that our referral systems within the health sector are effective. if i’m referring a client, i know who this client is going to, and it doesn’t end there, and i make sure that the client is aware in terms of whom to contact when they get to a certain point in terms of the healthcare system to ensure that we do not have a loss to follow up, which often happens.’ (participant 8) health-promoting policy: the participants commented on the importance of policies that enable and support the prevention of shcs. ‘… government policies must enable the reduction of secondary complications.’ (participant 1) the participants also highlighted the need to have minimum standards when it comes to patient care: ‘there is a standard for seating, there’s a good thing for wheelchairs that have come out but the rest of therapy, the rest of rehab, especially with spinal there is no standard protocol in this country, and that is a huge deficit in the service.’ (participant 4) access to resources the participants discussed how access to basic resources such as water, social grants, assistive devices, and medication facilitated the prevention of shcs. lack of clean water hinders self-management practise for individuals with sci, as expressed by this participant: ‘access to water and electricity. you can’t expect people to do intermittent catheterization if they don’t even have water.’ (participant 1) additionally, the participants highlighted the importance of accessible medication and consumables in the prevention and management of shcs: ‘… ensuring that supplies that go with the management of spinal cord injury at home are available … incontinence products, the whole package must be available to manage urine and waste products.’ (participant 16) ‘consistent supply of drugs and continence products is a biggie where in kzn we have battled to have a good supply of baclofen. … sometimes it’s just been stock out related.’ (participant 6) skilled healthcare workers the participants expressed their views on health professional competence in sci care and the need for continual training to support prevention care: ‘i also thought of healthcare workers who are trained to do regular home visits.’ (participant 11) ‘training of health caregivers about the area of prevention.’ (participant 13) discussion this study aimed to identify the services and interventions that are considered essential to prevent shcs throughout the life span of people with sci. four themes emerged from the analysis: patient-centred care, access to resources, promotion of health, and skilled healthcare workers. there has been limited research on the prevention of shcs in people with sci. our findings showed that a patient-centred care approach is crucial to enhance the prevention of shcs among people with sci. patient-centred care is a long-term and empowering approach to patient care that is needs-oriented, collaborative, inclusive of family and that engages the patient as a critical contributor to personal health (coulter & oldham 2016). to enhance patient-centred care, health professionals must respect and listen to the patients’ illness experience, encourage self-care and advocate for patients to make navigating the health system easier (hudon et al. 2012; lindberg et al. 2013). evidence shows that a patient-centred approach improves health outcomes, patient activation levels, and adherence to treatment (kuipers, cramm & nieboer 2019). a positive work environment and professional leadership are essential to facilitate patient-centred care practice (jardien-baboo et al. 2016; poitras et al. 2018). secondly, continuous health professionals training is needed to ensure competent health professionals who are proactive to prevent diseases (jardien-baboo et al. 2016). there is a need for continual health professional training to support prevention care. the lack of knowledge on sci and shcs care among health professionals disempowers people with sci and leaves them desperate for care (fuseini, aniteye & kofi-helegbe 2018; guilcher et al. 2013; zanini et al. 2020). because prevention care relies on the partnership between health professionals and persons with sci, health professionals need knowledge on sci, shcs, biopsychosocial approach to care, preventive care and soft skills such as communication, negotiating, goal setting and interdisciplinary teamwork skills (tramonti et al. 2020; zanini et al. 2019). training health professionals on the topics mentioned above should be part of the undergraduate curriculum and continuous in-service training. the promotion of health maintenance is critical in sci care to minimise the occurrence of shcs. the study’s participants highlighted the importance of promoting health by building personal skills, support systems, and health-promoting policy. people with sci can be empowered with sci and shcs prevention care information (chang et al. 2017; van loo et al. 2010) and be supported to live healthily. the support system can be from family, friends and health professionals (lindberg et al. 2013). involving the family and peers in rehabilitation and prevention care post-discharge can bridge the care needs gap by ensuring patient care continuity (sherry 2015). lastly, health professionals can be part of the support system for people with sci at all levels of care through follow-up care, regular home visits, outreach services, and telehealth interventions (dejong & groah 2015; sherry 2015). health-promoting policies are needed to enable and support the prevention of shcs. in the absence of a disability policy, south africa developed and adopted the framework and strategy for disability and rehabilitation services 2015–2020 (south african department of health 2015). the framework outlines disability management through accessible rehabilitation services, which include disease prevention and health promotion. to date, there is no published outcomes or impact of the framework and strategy for disability and rehabilitation services 2015–2020. south africa’s challenge is not the absence of health-promoting policies for people with disabilities, but the poor policy implementation and the low priority placed on rehabilitation care for people with long-term care needs (morris et al. 2019; sherry 2015). unless there is a shift from curative care to a biopsychosocial focus to care and to prioritise rehabilitation, health promotion, and disease prevention for people with disabilities, health outcomes will not improve. the last theme that emerged was access to resources that can help prevent and manage shcs. the participants highlighted the importance of accessible medication and consumables in the prevention and management of shcs. pharmaceutical care is necessary for some of the shcs, such as pain, spasm, and bladder and bowel management (patel, milligan & lee 2017). for example, assistive devices are essential for mobility, self-care and to facilitate participation in life activities. the shortage of medical resources needed to prevent shcs can worsen health outcomes and increase economic vulnerability due to out-of-pocket expenses for assistive devices and over-the-counter medication purchases (hanass-hancock et al. 2017). to safely manage bladder and bowel problems, clean water is necessary. however, due to unemployment and social inequalities, access to essential services such as safe water and electricity can be unaffordable (hanass-hancock et al. 2017; statistics south africa 2014; the world bank 2018). this study points to the importance of intersectoral collaboration when planning holistic care for people with sci, thus ensuring access to essential services, consumables, and pharmaceutical products. the study findings were comparable to the expanded chronic care model and system of prevention framework (figure 3) (barr et al. 2003; sims &aboelata 2019). the elements that were missing in the study findings were information system, gathering and sharing data with community organisations, community partnership and multi-sectoral partnership. research on disability needs can help build a case for prevention care intervention and equity. however, research should include people with disability and relevant stakeholders in the co-production of knowledge and implementing interventions (redman et al. 2021). co-production of knowledge through participatory action research can foster mutual learning, empower the community, and facilitate the translation of research into practice. building partnerships with the community and other sectors is central to sustainable development and it recognises the vital role other sectors play in shaping health outcomes. a collective understanding and buy-in from all sectors can inform planning, practices, and processes when redesigning systems to achieve better health outcomes. figure 3: comparison between the emerged themes and the elements from the expanded chronic care model and the system of prevention framework. conclusion to strengthen shcs prevention care among people with sci, the prevention model of care needs to include services and interventions that enhance patient-centred care, ensure access to resources and, promote health by skilled healthcare workers. the interventions and services target different levels and stakeholders, namely, the patients, health professionals, health system care approach and resources from the health system and outside the health system. systems perspective in service delivery and development of interventions promotes a broader understanding of the complexities of health problems and informs intervention design (atun 2012; maclachlan & scherer 2018). limitation this study has some limitations due to the coronavirus disease 2019 (covid-19) pandemic. firstly, the focus group discussions were conducted online, and we had to limit the discussion time. secondly, participants with sci could not take part in the study due to inadequate access to technology. although therapists based at a rehabilitation hospital were invited to participate, none accepted the opportunity to participate in the discussion, possibly due to the healthcare challenges from the covid-19 pandemic. future research must seek the opinion of people with sci and therapists. thirdly, future research should include the biokineticists because they are also important members of the multi-disciplinary team managing sci patients. implications research: future research can use systems thinking tools such as concept mapping, causal loop diagram, or modelling to conceptualise the proposed solutions and model their outcomes. practice: health professionals are encouraged to empower people with sci with knowledge on shcs, and self-management skills. education: health professionals need continuous in-service training on patient-centred care and the importance of preventive care. acknowledgements the authors would like to thank all the participants who were willing to share their views on the subject. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.i.p. conceptualised the study, was responsible for data collection, analysed the data and wrote the manuscript. h.m. and j.p. provided supervision during the conceptualisation phase, assisted during data analysis, read several iterations of the manuscript and conducted the final editing. funding information this research was supported by the consortium for advanced research training in africa (carta). carta is jointly led by the african population and health research center and the university of the witwatersrand and funded by the carnegie corporation of new york (grant no—g-19-57145), sida (grant no:54100113), uppsala monitoring centre and the deltas africa initiative (grant no: 107768/z/15/z). the deltas africa initiative is an independent funding scheme of the african academy of sciences (aas)’s alliance for accelerating excellence in science in africa (aesa) and supported by the new partnership for africa’s development planning and coordinating agency (nepad agency) with funding from the wellcome trust (uk) and the uk government. the statements made and views expressed are solely the responsibility of the fellow. this research was also supported by the national research foundation (thuthuka grant no.118017). data availability the data that support the findings of this study are available from the corresponding author, s.i.p., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references atun, r., 2012, ‘health systems, systems thinking and innovation’, health policy and planning 27(suppl 4), 4–8. https://doi.org/10.1093/heapol/czs088 barr, v.j., robinson, s., marin-link, b., underhill, l., dotts, a., ravensdale, d., et al., 2003, ‘the expanded chronic care model’, hospital quarterly 7(1), 73–82. https://doi.org/10.12927/hcq.2003.16763 callaway, l., barclay, l., mcdonald, r., farnworth, l. & casey, j., 2015, ‘secondary health conditions experienced by people with spinal cord injury within community living: 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study of health professionals’ views’, swiss medical weekly 149(june), w20086. https://doi.org/10.4414/smw.2019.20086 abstract introduction knowledge translation and knowledge mobilisation indigenous knowledge production in africa disability-inclusive knowledge translation and knowledge mobilisation in africa knowledge translation and knowledge mobilisation in the partnerships for inclusive research and learning project digital storytelling purpose research methods and design results discussion conclusion acknowledgements references about the author(s) lesley l. sikapa school of medicine and population health, faculty of health, university of sheffield, sheffield, united kingdom hadiatou dialo one family people, freetown, sierra leone veronica n. ndi north west association for women with disabilities, (nwawwd), bamenda, cameroon lanjo s. neindefoh department of performing and visual arts, university of bamenda, bamenda, cameroon che d. nkemchap special needs entrepreneur group (sneg), bamenda, cameroon lynn cockburn department of occupational science and occupational therapy, temerty faculty of medicine, university of toronto, toronto, canada citation sikapa, l.l., dialo, h., ndi, v.n., neindefoh, l.s., nkemchap, c.d. & cockburn, l., 2024, ‘digital storytelling to promote disability-inclusive research in africa’, african journal of disability 13(0), a1495. https://doi.org/10.4102/ajod.v13i0.1495 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa’, under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research digital storytelling to promote disability-inclusive research in africa lesley l. sikapa, hadiatou dialo, veronica n. ndi, lanjo s. neindefoh, che d. nkemchap, lynn cockburn received: 14 june 2024; accepted: 19 aug. 2024; published: 30 sept. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: digital stories have been shown to be effective in sharing information. the partnerships for inclusive research and learning (pirl) was a 4-year international participatory research project focussed on the digital divide in inclusive research. objectives: members of pirl share their experience of using digital storytelling to get key messages from the project to a wide range of people. method: members of pirl were invited to develop digital stories and create project-specific guidelines for digital story development. seven people participated in workshops given by experts, read literature, watched digital stories and discussed how to create digital stories. results: the group created six digital stories, each one addressing a different aspect related to disability-inclusive research, with many having a focus on africa and the creation of credible african evidence. the importance of assisting community members to think about and support research and evidence creation was one of the goals of the project. the videos provide an avenue to share insights about disability-inclusive development research. group members stated that being part of the process significantly improved their understanding of translating evidence into formats that are more understandable. conclusion: creating digital stories requires commitment, a significant amount of time, access to digital tools, and financial resources. working collaboratively on this project was not only meaningful but also encouraged positive working relationships and fostered critical thinking. contribution: this article contributes to a better understanding of ways in which digital storytelling can be used in knowledge-sharing strategies to promote disability inclusion. keywords: digital storytelling; knowledge translation; knowledge mobilisation; knowledge translation in africa; disability studies; disability inclusive research; participatory research; arts-based research. introduction community-based researchers look for ways to share their research with people in other spaces such as students, clients, patients, organisations and key decision makers. the production of short, well-planned digital stories is one way to convey research information to a wide range of audiences. the partnerships for inclusive research and learning (pirl) was a 4-year international project focussed on participatory research and the digital divide in inclusive research. the digital divide refers to the ways in which some groups do not have access to digital systems and resources in the ways that others do (arakpogun et al. 2020; gsma 2022; heeks et al. 2022; scanlon 2021). the digital divide is larger for people with disabilities, people who live in poverty, and those who live in the global south, as limited financial and systemic infrastructure further compound the differences in access (datoo & kurio 2021; fang et al. 2019; johansen et al. 2021). the pirl network was made up of over 100 community-based and academic researchers, students and professionals, who were persons living with and without disabilities from several locations around the world (primarily cameroon and canada) and committed to a participatory community of practice (cop). the pirl initiative had a focus on research that included people living with disabilities as researchers and particularly explored the roles of information and communication technologies (ict) in the social learning of researchers and research teams. partnerships for inclusive research and learning members embarked on innovative knowledge translation (kt) and knowledge mobilisation (kmb) strategies to get key messages to a wide range of people. digital storytelling (dst) was one of the knowledge-sharing approaches chosen by the pirl team. a key contribution of the pirl project to the field of digital storytelling as a kt and kmb strategy stems from the inherent diversity within its team. the project aims to reflect the varied perspectives and voices of its members, offering a richer, multi-faceted view of the issues addressed. knowledge translation and knowledge mobilisation over the past two decades, there has been increased attention related to how knowledge and evidence, including research findings, can be used to influence policy and practices in african settings (oronje et al. 2022; serge et al. 2023; uneke et al. 2022). knowledge translation and kmb are activities that lead to the production and use of research results in ways that make them more usable and understandable to other researchers, decision makers and community members. in this article, we use the terms kt and kmb to refer to the processes for implementing research and evidence-based knowledge by researchers and community members to improve real-world conditions (sshrc 2021). for much of our work, the goals of kt and km have to do with social change and the development of more just and equitable social conditions. knowledge translation and kmb both involve multiple stakeholders, including researchers, practitioners, policymakers and community members in the processes of disseminating the knowledge and evaluating its uptake and impacts (gervais et al. 2023; graham 2006). both kt and kmb are usually part of academia, for example, by informing or improving research agendas, theory or methods; in other parts of society, kt and kmb contribute to public discussions and debates, policy development or service improvement (sshrc 2021). we make a distinction between kt and kmb in terms of scope and focus, methodology and setting. the term kt is more commonly used in the health and medical sciences, and includes the systematic review, synthesis, dissemination and application of knowledge, particularly in health-related contexts (curran 2011) and tends to use a more linear approach from research to practice. for example, kt can emphasise translating research findings into formats that can change clinical practices and policies. typically, kt involves more structured and formalised processes, such as creating clinical guidelines or policy briefs for a specific sector or population. knowledge translation may include specific strategies for different stages of research translation (e.g. synthesis, dissemination and implementation) (asamani & nabyonga-orem 2020). knowledge mobilisation is often seen as a broader term that is used in many fields including health sciences, education, social sciences and community development (gervais 2023; sshrc 2021). knowledge mobilisation focusses on creating connections between the researchers (the knowledge producers) and potential users, to facilitate the use and exchange of knowledge in less linear ways. knowledge mobilisation can include a wider array of activities and collaborative projects such as the creation of clear language documents, the development and implementation of workshops and events that prioritise community engagement, and social media campaigns. knowledge mobilisation emphasises the co-creation of knowledge and ongoing interactions between several different groups, and can sometimes be seen as a longer-term approach. knowledge mobilisation generally reflects the perspective that knowledge is exchanged within societies in different ways, resulting in more holistic approaches to integrating knowledge into practice than kt. both kt and kmb include summarising and synthesising information in ways that are easier to read or view and sharing information in a wide range of both established and innovative ways. end users such as community members, patients, families and others can be involved in the creation of kt and kmb products such as stories, videos, dramas, short documents and policy briefs. while the involvement of end-users in kt is crucial for enhancing research relevance and applicability, significant challenges hinder effective participation. the literature identifies barriers such as limited understanding of kt and kmb processes, demanding engagement requirements that strain both end-users and researchers and institutional obstacles such as bureaucratic red tape and inadequate organisational support. documented across various contexts, these challenges suggest that the demands of involvement may outweigh perceived benefits, resulting in diminished or superficial engagement (asamani & nabyonga-orem 2020; harvey et al. 2015; kalbarczyk et al. 2021; lavis et al. 2006). specifically, in lowand middle-income countries (lmics), these barriers are exacerbated by additional constraints such as inadequate access to digital tools and internet connectivity (kalbarczyk et al. 2021). in african countries, various kt structures facilitate integrating research into policy and practice. these range from institutional systems managed by national research institutes to annual events and conferences disseminating evidence. countries such as rwanda have integrated kt into routine health sector reviews, while senegal has launched capacity-building programmes for policymakers and researchers. however, challenges such as inadequate funding, poor synthesis of research findings and insufficient personnel hinder these platforms’ effectiveness and impact (asamani & nabyonga-orem 2020). addressing these challenges and exploring alternatives like storytelling is essential to enhance the effectiveness of kt and kmb initiatives. indigenous knowledge production in africa indigenous knowledge production is a localised epistemic endeavour developed within specific communities to understand and address life’s challenges. it encompasses a wide range of accumulated strategies, practices, techniques, tools, beliefs and values unique to a particular area and influenced by the community’s worldview, socio-economic conditions and ecological context (emeagwali 2014; kaya 2014; mapara 2010). this knowledge reflects the unique cognitive approaches of people who have historically inhabited an area before the introduction of dominant external cultures. before the colonial era, indigenous knowledge in africa, transmitted through families and generations, was highly valued (abdulrahman et al. 2021). oral tradition played a crucial role in passing down epistemic values, with proverbs being a significant component of this heritage, often containing philosophical insights and practical advice (fabidun & olatunji 2021). african knowledge was conveyed and learned through lived experiences, storytelling, parables, riddles, myths, community ceremonies, rituals, dance, music and other narrative forms or education-centred activities (fabidun & olatunji 2021; ikuenobe 2018; ngara 2007; shokane et al. 2018), reflecting a rich complexity often overlooked by those who prioritise written traditions. indigenous knowledge has been mistakenly perceived as simplistic and not suitable for scientific investigation because of its oral nature and its focus on people rather than easily measurable data (masolo 2003). despite historical attempts by colonial forces to suppress and devalue indigenous knowledge systems, they have persisted and remain integral to the communities that develop them. these systems are dynamic, not merely a collection of static truths but evolving insights that integrate new adaptations while respecting inherited philosophical understandings (jimoh 2018). individuals within these communities contribute to and reassess communal knowledge, ensuring its relevance and applicability to changing circumstances. in recent years, there has been a growing call for the decolonisation of knowledge production (heleta 2016; mbebe 2016; smith 1999) emphasising the importance of recognising and valuing indigenous knowledge systems. however, practical approaches to decolonising knowledge have received less attention. digital storytelling presents a valuable opportunity to achieve this, by providing a platform for the preservation and dissemination of indigenous knowledge. the evolution of dst over the past decades in various social media spaces has provided opportunities for african storytelling to thrive. the use of dst across the continent is now widespread, with griots, jeli, journalists and activists, including people with disabilities, narrating their diverse stories using digital tools. by combining recorded audio narration with graphics, text, videos, pictures and music, modern-day storytellers can quickly share their stories with a wider audience and have millions of views. disability-inclusive knowledge translation and knowledge mobilisation in africa the need for kt and kmb related to african disability stories also needs to be emphasised. digital storytelling is a powerful tool for kt and kmb related to disability and social inclusion. primarily, there are no ‘voiceless’ people, despite statements that are often made about ‘giving voice to the voiceless’. people with disabilities are not voiceless; rather, their voices have been silenced and oppressed by lack of opportunities and inclusive stages and spaces. for instance, there are so many untold beautiful, inspiring and empowering stories of people with disabilities in africa that people have not listened to. this lack of interest can be partly attributed to the significant gaps in access to technology and knowledge of how to use digital tools for the majority of people with disabilities in the continent (abrahams et al. 2023; gould et al. 2015). despite these challenges, many people with disabilities are now considering social media, video creation and many forms of dst as channels to promote inclusion and empowerment. through dst, the intersectional barriers preventing people with disabilities from participating can be challenged and broken. particularly for women with disabilities, dst has the potential to improve access to quality services such as health, education, employment and social services. storytelling can unlock women’s potential and contribute to a more inclusive society where every person with a disability enjoys equal rights and can thrive. there are a growing number of people with disabilities across the african continent who are breaking the silence about disability and exclusion, and taking full advantage of digital tools to tell their stories and change the narrative. this storytelling has brought light to individual stories and collective issues affecting rights and well-being and has begun to change the way people perceive disability. examples are captured in the african disability rights yearbook which has been published for more than a decade (ngwena 2023). knowledge translation and knowledge mobilisation in the partnerships for inclusive research and learning project the pirl project employed several types of kt and kmb strategies throughout the 4 years of the project. the team emphasised webinars, a website, blogs and discussions to share information. in the third and fourth years, the team decided to expand its reach by focussing on various additional types of kt and sharing, including academic papers, podcasts, educational activities that used theatre and performances, the development of a verbatim theatre workshop about inclusion on research teams, visual arts such as a mural, the development of a newsletter, and the use of dst. digital storytelling digital storytelling is a specific form of storytelling that allows the sharing of personal narratives in a captivating format prepared by participants in a project (not an external professional) (lambert 2012; park, forhan & jones 2021). this dst format includes a story used to share knowledge about a phenomenon, several still images with voice-over narration and background sound, and each story is two to five minute duration. creation by project participants is crucial as it enables them to share facets of their everyday life stories, reflecting the foundational goal of including participants in key aspects of knowledge generation and sharing (de jager et al. 2017). the storyteller has control over the way the story is told by choosing the words and images, which makes the process of production and learning meaningful for the storyteller. there are several components of a digital story which should be included. these components are: (1) a scripted layer of about 250–375 words. the script will be read in audio and should result in a narration of about three to four minutes duration. (2) the audio layer is the recorded voice-over of the person reading the script, which becomes integrated with sounds, music or ambient noise. (3) the visual layer is made up of about 20 images with the words from the script added as captions. the person doing the final editing has to ensure that all the components fit together and that the pacing and rhythm of the text, pictures, captions and sounds or music are all aligned (de jager et al. 2017). purpose the purpose of this article is to illustrate how dst can be done in a group setting and can be utilised to share the results of research studies, particularly for contributing to social change. a secondary purpose is to emphasise that developing digital stories with a diverse range of community members, including members of disability, academic and arts communities, can strengthen the impact of the stories. research methods and design when the pirl team decided to integrate dst into kt and kmb processes, an invitation was extended to all network members to participate in crafting digital stories. seven individuals agreed to participate in this initiative. demographically, the group included six africans from cameroon and sierra leone, one white canadian, two individuals identifying as persons with disabilities, four women, and three men. two members were based in canada for the duration of the project, while the remaining five resided in either cameroon or sierra leone. the project was led by a coordinator who also participated as a member, playing a crucial role in disseminating resources, leading workshops and managing logistics such as meeting schedules and deadlines. embodying the participatory ethos of dst, the process was highly collaborative. decisions – from scheduling to platform selection – were made democratically based on input from the coordinator and team members. the group utilised existing resources to develop our guidelines, which were then applied in our collective work. content decisions for digital stories, such as image and sound selection, were made collectively, while individual storytellers had autonomy within established guidelines. phase 1: meeting to learn about digital storytelling the first phase was taking time for the group to get to know each other and to learn about the specifics of how the digital stories would be developed. during this phase, we discussed the logistics, such as the technical needs, what kinds of video editing would be required and how pictures could be selected and compiled. we watched the digital stories that had been done by the social justice on youth voices group in south africa (walker & martinez-vargas 2020). we decided to use a google drive folder for scripts, images and audio so that all members of the group could easily access others’ work to provide feedback. group members also needed to talk through the use of laptops and phones, internet access and how the voice recordings would be done. we learned who in the group had video editing tools and skills. we decided that the timeline would include a few weeks to draft scripts and compile pictures (copyright-free, permission granted or photos that had been taken personally). although it would come later, it was also important for group members to begin to think about the soundtrack and audio voiceover they wanted for their story. the group decided to have weekly asynchronous check-ins to share progress through a whatsapp group, with synchronous meetings as needed. phase 2: brainstorming ideas through a story circle each participant was able to talk about ideas for their story through a story circle and brainstorming session. story circles are group activities that help participants develop, clarify or structure the digital story they want to create in a supportive group environment. in our project, the story circles were done online, and the importance of maintaining confidentiality was discussed among the team members. each person shared personal stories within the group, which provided opportunities to explore a range of ideas, learn from each other and polish each piece. during our first story circle activity, each person initially had approximately eight minutes to share their ideas and get feedback. each person presented their rough story idea, including a draft of the script or idea sequence, and could include suggestions for visuals to go with the story. they then received feedback from the other members of the group. group members were asked to consider the following questions when giving feedback: how does the story relate to the pirl goals, to disability inclusive development, to global south-north research and ideas of equity and social justice? who is the intended audience for this story? what first-hand experience could be included to convey their ideas to that audience? what aspects of the story could be expanded upon? what could be clearer? during this phase, there was an emphasis on supportive discussion, and members all agreed that hearing the stories that their colleagues felt were important was a very meaningful process. phase 3: drafting the scripts group members worked individually or in pairs to develop their scripts. when they were ready with a draft, they informed the other group members, who then reviewed and provided feedback. this iterative process continued until each of the final scripts was finished. phase 4: finding, compiling and matching pictures to script and identifying background music when the script was done, the next step was to select pictures and music to accompany it. we set ground rules about what could be used (e.g. they had to be copyright-free). we developed a library where pictures were shared and saved, and each person also sourced their own pictures from various places. when someone could not find a desired picture or was not clear on what image to use for a particular segment, they would ask the group for assistance. music was also found using several different avenues. phase 5: recording and editing the final digital story once the written scripts were finalised and the pictures had been decided on, the audio recording was made. edits were made to ensure that the timing was correct, the text of the script was added as captions, and that the audio and text corresponded to the pictures. this step took editing skills and time to ensure that the final digital story was polished and within the parameters that had been predetermined (i.e. within about three minutes, the content fit with the project goals, pictures corresponded to the script, captions matched the audio). there was considerable discussion about details at this phase, which required ongoing encouragement so that the final videos would be completed. phase 6: sharing final outputs and reflections on the process in the final phase, we ensured the digital stories were uploaded to our youtube channel for sharing. we then presented these stories to other team members and our wider network. reflecting on the process assisted us in appreciating the work and what could be done similarly and differently in similar future projects. ethical considerations ethical clearance to conduct this study was obtained from the university of bamenda, ethical review committee (no. 2019/0124h/uba/irb) and the university of toronto, health sciences research ethics board (no. 39308). the digital stories were being developed by members of the research team (not by other community members), no additional ethical approvals were required for this project. results the group created five digital stories (table 1) in video format (with captions) which are publicly available online. each one addresses a different aspect related to disability inclusive research, with many having a focus on africa and the creation of african evidence. the importance of assisting community members to think about and support research and evidence creation was one of the goals of the project, and the videos reflect this goal. the stories are available at this link: https://www.youtube.com/playlist?list=plvz3uqj8ubevlpq54lwns21swm2kk1rl0. table 1: overview of the digital stories created in the partnerships for inclusive research and learning project. the videos provide an avenue to share insights about disability-inclusive development research. group members stated that the beginning part of the process of creating the digital stories significantly improved their understanding of what to consider when translating evidence into formats that are more understandable. the five stories explored themes of disability-inclusive research and why research is important in community building and development; aspirations for better research support and evidence creation in africa; partnerships across local and international teams; and social justice as foundational to disability-inclusive research. discussion in alignment with previous research (cunsolo willox, harper & edge 2013; lindvig 2017; manning 2010), dst has shown to be an appropriate methodology for a participatory research project such as the pirl project. as a research method, dst holds promise as a decolonising tool because it does not focus on representations of marginalised groups from the dominant perspective. digital storytelling empowers storytellers by placing the power of expression and knowledge creation directly in their hands, thereby supporting the decolonisation of narratives and the knowledge they embody. this method empowers participants to convey their stories authentically, utilising their own voices, perspectives and chosen representations (white & epston 1990). furthermore, dst can tap into a rich and diverse tradition of storytelling that has historically played a crucial role in mobilising change within communities and networks (e.g. abbenyi-nfa 2007; african literature association 2013). by doing so, through not only the creation of knowledge but also in its delivery, dst has been proven effective in ensuring that marginalised perspectives are preserved and continue to thrive in various contexts (perley 2009; rieger et al. 2021). in practice, the pirl project’s diverse group, spanning different countries, genders, abilities and backgrounds, enriches our dst. this diversity shaped the dst process, ensuring that narratives were constructed ‘from the inside out’, capturing the authentic voices and perspectives of its participants. for instance, in creating ‘the pirl story’, integrating these varied voices was paramount to depict the complexity and richness of the experiences shared. this approach not only highlighted the individual contributions but also how they collectively formed a nuanced and comprehensive portrayal of the group’s dynamics and insights. this methodology highlights dst’s role as a powerful platform for inclusive representation. by utilising the diverse backgrounds of its members, the pirl project demonstrates how dst can foster inclusive representations of community and scholarly experiences. this approach not only emphasises dst’s use for kt and mobilisation but also amplifies the diverse voices within the project, enhancing the discourse and understanding of the issues addressed. while the outcome of dst is undoubtedly significant, existing research shows that the process of creating it can sometimes be equally, if not more, important (brushwood rose & granger 2013; gubrium et al. 2016; rich, lamola & woods 2006; wexler et al. 2013). in the context of our dst, the story circles emerged as a particularly valuable aspect of the process that warrants further discussion. at the outset of creating our stories, we organised a story circle. although later sessions were not explicitly labelled as story circles, they used the same format: team members shared their stories, intentions and messages, and received feedback from others. these sessions offered us opportunities to reflect on our journey within the pirl project and other research-related experiences. they enabled a holistic examination of our experiences, considering the beginning, end, the various highs and lows, as well as the lessons learned along the way. the process of using narratives to share experiences, as in the case of digital stories, can be emotionally demanding work (boydell, solimine & jackson 2016). however, several benefits were observed, aligning with prior studies that highlight the advantages of dst (brushwood rose & granger 2013; gachago et al. 2013; ribeiro 2016; wexler et al. 2013). in our project, story circles not only provided opportunities to scrutinise and make sense of our experiences but also facilitated meaning-making. the creation of these digital stories promoted deep reflection on our personal experiences and the experiences of others, fostering empathy and understanding of complex situations. the process encouraged critical and creative thinking and led to group members having very personal and vulnerable conversations. through engaging in this process, we realised the critical roles that creating and sharing digital stories can play in sharing knowledge, advocating for change and amplifying voices from african contexts. one of the group members said: ‘i based my story on my experiences and found it helpful to have others to assist me to not be too emotional in my writing. i learned a lot, and was surprised at how the stories developed as the pictures were added. being involved in the process made me think about how important storytelling can be. i also learned about how projects can be coordinated and managed. the project was organised so that there were challenges but not too much difficulty, and we understood what had to be done step by step. we were encouraged to ask questions when we were not clear on what needed to be done, and have discussions with the others. being involved in a community-based, inclusive research project showed us that it can be done and can make a difference.’ (cameroonian male, academic, community organizer) connecting to other digital storytelling in africa and other places our dst project primarily builds upon the work of melanie walker, carmen valquez garcia and the graduate students they collaborated with in south africa on the ‘youth voices on social justice’ project (walker & martinez-vargas 2020). as we developed our own digital stories, we found ourselves continually returning to both their website and the session they had done with us as part of the pirl institute 2021, as their directions and enthusiasm were very helpful. others have also used dst in africa or related to disability, and reviewing their work reveals similarities and differences in what we did. variations are especially evident in the process; although there is a framework, there is not just one way of using it. one collection of digital stories related to disability inclusion and human rights was produced by the secretariat of the african decade of persons with disabilities (sadpd 2011). these stories use a similar process to the pirl stories, to reflect real-life efforts of people with many different experiences, and from many african countries; by telling their stories, the creators aim to inspire others and to improve the attainment of human rights. some of the challenges we experienced with technology were identified by yan and colleagues (yan et al. 2021), who also cited dreyer et al. (2017) and gogela and ntwasa (2015) in talking about the challenges of navigating video editing software in african contexts. the selection of video editing tools and processes appears to be a particularly relevant consideration in african contexts, where training, internet access and electricity outages can compound other technical challenges. another example of dst related to disability is provided by sitter and colleagues who report on a project titled ‘my life. my story’, which focussed on transitions for adults with developmental disabilities (sitter et al. 2023). nonetheless, as our project and the others cited here indicate, access to and expertise in the use of technology continues to improve in many places, making dst more accessible and feasible, and an engaging kt and kmb tool in african contexts. reflections embarking on the dst project was a successful part of the overall project, particularly in disseminating information about project activities. this type of project involves numerous details, making the role of a project coordinator essential for maintaining organisation and progress. creating the digital stories proved more challenging than some participants had anticipated. the process was time-consuming and occasionally led to frustration among team members, highlighting the significant commitment required to complete the stories. the project coordinator’s assistance in fostering teamwork and maintaining motivation was crucial. additionally, having a team committed to the project’s goals and activities, supported by the coordinator, was instrumental in ensuring the completion of the digital stories. from the dst project, group members learned new digital skills in storytelling, including how to do voiceovers, and how to write, review and edit a script. leadership skills were also improved. as one member said: ‘as a woman with a disability, this process helped me learn about how to coach other women with disabilities to take part in storytelling. i understood the role of a director in doing a short film.’ (cameroonian female, community leader, living with a physical disability) and several members talked about being more comfortable with taking leadership in projects. some members have continued to use dst, both using the methods described here and other approaches, in their work. for example, one member has written and edited over 10 digital stories for local organisations which have reached other collaborators, partners and funders. some of these were to report the activities and findings from various projects, and others were for advocacy. some members have gone on to use digital stories in other ways, including to promote their work, gain social media visibility, and improve access and opportunities for others in need. other local organisations have shown interest in dst because they have seen the evidence of their impact. the process as a whole was part of the broader pirl initiative, which aimed, among other objectives, to include women and girls with disabilities in research and community-based learning. the dst project is one example of how women can benefit from technical and financial support to improve their inclusion and participation in inclusive research and learning processes in africa. we realised that it was a way to reach beyond local women with disabilities to others in africa and globally. it provided an example of how women can become research assistants and researchers themselves when they are provided the support they need. they have relevant skills to be used in research and often have better mastery of local languages used in their communities than the researchers who come from outside. future work could develop these skills and aspirations, including developing digital stories in other languages. one strength of dst, which is not unique to the african context, is its ability to easily reach a wide audience, both locally and globally, thus contributing to the growth of a rich body of knowledge. by harnessing the power of digital tools, digital storytellers can bridge geographical distances, and connect with people from different backgrounds. the relative simplicity of digital stories allows for better access by many in communities with less reliable electricity and internet access, as compared to other forms of digital content such as full-length documentaries and films which may require longer times to create, more financial resources, better connectivity and storage capacity on smartphones. they mitigate against the limitations posed by other forms of knowledge dissemination such as papers and books, as those who might not be able or willing to read can watch and understand digital stories. limitations a significant limitation of this article was the lack of systematic data collection although the project was part of a larger participatory research project. the data presented are primarily retrospective, as the dst activity was not originally conducted with the intention of producing a research article. this retrospective approach led to several constraints: (1) incomplete data: some of the data about what happened may be missing or incomplete because it was not collected with research objectives in mind. (2) inaccuracies and recall bias: gathering data retrospectively can introduce inaccuracies and recall bias, and in our situation this is possible. especially given how time-consuming the dst process is, we might have missed some key aspects in recounting what was done.(3) methodological limitations: although we did keep written records of our process, we did not collect personal notes from the group members. the informal nature of data collection regarding each person’s perspectives later in the project meant that rigorous methodological approaches were not consistently applied. however, maintaining extensive records of meetings, discussions and reflection sessions was beneficial in writing this account. we recommend that future teams, if resources permit, conduct dst in a manner that facilitates the systematic documentation of both the process and the results, ensuring a more robust foundation for subsequent research. the dst process, while a powerful medium for narrative expression, introduces several challenges that can impact the authenticity and integrity of the stories produced. conducting story circles, a common technique in this process, presents unique difficulties. while participants are expected to own their stories, speak in their voices and share what they want, story circles require them to present their ideas to others, discuss them and receive feedback. this dynamic ultimately resulted in multiple participants influencing the content of the stories, which was witnessed in both the individual and group stories in our project. in the group stories, multiple people contributed to every content decision, including what to discuss, the final script, the choice of photographs and the music. for the individual stories, while the main author primarily decided on the topic, other aspects of the dst process were influenced by group members. determining whether this influence is an advantage or disadvantage remains unclear, as the degree of group influence on an individual’s story was never assessed. this raises questions about the limitations of collaboration in dst. furthermore, the duration constraints of digital stories imply that while they can be used to highlight certain aspects of a story, other essential elements might be omitted. this challenge has been noted by other researchers in their experiences with dst (boydell et al. 2016; brushwood rose & granger 2013). overall, while story circles provide valuable opportunities for reflection and feedback, they can also complicate the storytelling process by introducing additional layers of consideration and influence. digital storytelling also introduces significant barriers, particularly because of the digital divide, which can disproportionately impact certain groups, including persons with disabilities and individuals in lower economic contexts. digital storytelling requires specific technological tools such as computers, software for video editing and reliable internet access, which are not universally available. many of the group members were working in locations with limited or sporadic electricity and internet access. there were several challenges for people in cameroon and sierra leone to have adequate internet access to easily search for pictures, music and audio, and to do editing, particularly in cameroon where electricity and internet were often interrupted, sometimes for long periods of time. at times, the extensive background work required for dst seemed disproportionate to the benefits it yielded, suggesting that this method might not be suitable for all projects. we found that we often had to go between more than one mobile device and use power banks to be able to deal with power issues. to mitigate the challenges with internet connectivity, switching between several network providers depending on which one was more reliable at any given point in time was also necessary. often extra patience by all team members was needed to wait for certain times to upload or download data and files. nevertheless, these barriers are not unique to our situation but are indicative of a broader systemic issue. many communities lack the necessary infrastructure for high-speed internet and the educational frameworks to foster digital literacy. digital storytelling requires more than just narrative skills; it demands proficiency in using digital tools for editing and production. these challenges are further compounded for persons with disabilities, as accessibility issues can severely limit their engagement with digital platforms. as a result, while dst is a powerful tool for advocacy and self-expression, it can unintentionally reinforce social and economic disparities by favouring those with existing technological access and skills (lythreatis, singh & el-kassar 2022). having grappled with the challenges of making digital stories more accessible, particularly for african audiences, we believe that they can be a useful tool in kt and kmb activities. one important aspect is to ensure that digital stories are inclusive of people with various disabilities, allowing them to be accessed and enjoyed by all. the transcripts can be used by people with vision impairments and hearing impairments to access the storyline. however, we did not do detailed alternative text descriptions of each picture as we did not have the time to do that, or the financial resources to pay someone to do it. this lack of description meant that those who could not view the stories missed some of the impact. with each digital story having many pictures, it would have been over 100 pictures that needed to be described. one recommendation would be to build in a process of adding the written description of pictures as they are chosen so that it might not take as long, or to include a budget item for someone to have dedicated time to provide descriptions. all of our digital stories are available on youtube, which allows us to track the number of views. we have been disappointed that to date there has not been more interest in them, as the viewing numbers are small. we do know that some of the stories were shared in other ways such as on whatsapp and in in-person meetings, and so these numbers do not reflect the total number of views. our project did not have large amounts of funding to promote the digital stories and to encourage educators and community workers to use them. if resources were available, it would have been beneficial to have some strategies to ensure that the stories were well-publicised. we encourage those who are applying for funding to do dst to include dissemination in their project proposal and budget. conclusion this article underscores the potential of dst as a potent participatory research method and a mechanism for decolonising knowledge production. it highlights how dst empowers marginalised groups by enabling them to articulate their narratives from their own perspectives, thereby challenging dominant narratives. additionally, it illustrates how the diversity within research teams, exemplified by the pirl project, can enhance the storytelling process, resulting in more authentic and inclusive representations of experiences. the article also addresses the practical challenges of dst, particularly in african contexts, where technological limitations and accessibility issues may impede its application, thus highlighting the need for innovative solutions to bridge the digital divide and ensure that dst remains an inclusive and effective tool for kt and mobilisation. overall, both the dst group and the entire pirl team expressed high satisfaction with the digital storytelling process and its outcomes. the creation of digital stories requires significant commitment, time, access to digital tools and financial resources. our team found the collaborative process to be meaningful, resulting in a long-term, tangible product that effectively communicates aspects of this complex project to a broader audience. creating the digital stories encouraged positive working relationships and critical thinking. the final videos are a tangible and useful way to share information with others. acknowledgements the authors are very grateful for the contributions of dr. louis mbibeh to the pirl digital storytelling project. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.l.s., h.d., v.n.n., l.s.n., c.d.n., l.c. made significant contributions to the development and implementation of the project, and they were involved in drafting, writing and reviewing this article. funding information this work was supported by the social sciences and humanities research council of canada (grant no. 890-2018-0086) and the university of sheffield institutional open access fund. data availability the authors confirm that the data supporting the findings of this study are 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edn., w.w. norton, new york, ny. yan, t., lang, m., kyomuhangi, t., naggayi, b., kabakyenga, j., william, w. et al., 2021, ‘let all know: insights from a digital storytelling facilitator training in uganda’, global health action 14(1), 1933786. https://doi.org/10.1080/16549716.2021.1933786 abstract introduction methods results discussion conclusion acknowledgements references about the author(s) carushca de beer department of psychology, faculty of community and health science, university of the western cape, cape town, south africa serena isaacs department of psychology, faculty of community and health science, university of the western cape, cape town, south africa cameron lawrence department of psychology, faculty of community and health science, university of the western cape, cape town, south africa gugulethu cebekhulu department of psychology, faculty of community and health science, university of the western cape, cape town, south africa jade m. morkel department of psychology, faculty of community and health science, university of the western cape, cape town, south africa jonathan nell department of psychology, faculty of community and health science, university of the western cape, cape town, south africa noluthando mpisane department of psychology, faculty of community and health science, university of the western cape, cape town, south africa wayne p. van tonder department of psychology, faculty of community and health science, university of the western cape, cape town, south africa yolanda r. mayman department of psychology, faculty of community and health science, university of the western cape, cape town, south africa lobisa z. thobejane department of psychology, faculty of community and health science, university of the western cape, cape town, south africa athena pedro department of psychology, faculty of community and health science, university of the western cape, cape town, south africa citation de beer, c., isaacs, s., lawrence, c., cebekhulu, g., morkel, j.m., nell, j. et al., 2022, ‘the subjective experiences of students with invisible disabilities at a historically disadvantaged university’, african journal of disability 11(0), a932. https://doi.org/10.4102/ajod.v11i0.932 original research the subjective experiences of students with invisible disabilities at a historically disadvantaged university carushca de beer, serena isaacs, cameron lawrence, gugulethu cebekhulu, jade m. morkel, jonathan nell, noluthando mpisane, wayne p. van tonder, yolanda r. mayman, lobisa z. thobejane, athena pedro received: 27 aug. 2021; accepted: 10 apr. 2022; published: 10 june 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite policies that promote inclusivity of students with various challenges, students with invisible disabilities at higher learning institutions may encounter various levels of stigma and marginalisation. this primarily stems from a lack of awareness about what invisible disabilities encompass, and very importantly, how they affect those who live with them. objective: this study explored the subjective experiences of students with invisible disabilities at a historically disadvantaged university. method: this study used a qualitative approach to facilitate the exploration of the subjective experiences of students with invisible disabilities. twelve students with invisible disabilities were interviewed online via google meet platform, using semi-structured interviews. interviews were transcribed verbatim and analysed using a thematic analysis. results: three thematic domains were identified, invisibly disabled students’ subjective experiences within the context of (1) home and community, (2) university life and (3) support offered at their university. conclusion: this study’s findings highlight the importance of awareness of invisible disabilities in higher education. support for students with invisible disabilities, and breaking down the barriers to it, can compound better experiences in the lives of those who have invisible disabilities. targeted awareness campaigns could contribute to more mindful learning and teaching practices and improve the overall experience of these students. this information can also be used to promote awareness of students with invisible disabilities in higher education institutions. keywords: invisible disability; higher education; awareness; support; policy; stigma; historically disadvantaged university; disability units. introduction people with disabilities in south africa make up 13% of the population, of which 5% have a severe disability (maziriri, madinga & lose 2017); however, graham et al. (2014) asserted that the estimated number of persons who have disabilities might be higher than most numerical representations. people may be faced with a more ‘immediately’ perceptible disability, such as a physical or sensory disability (viriri & makurumidze 2014), and some may be faced with challenges that are not immediately perceptible, such as learning difficulties, known as invisible disabilities (venville et al. 2016). invisible disability, as defined by the invisible disabilities association (2018), encompasses psychological, neurological or physical conditions that constrain afflicted individuals’ movements, senses or activities, but which are invisible to the spectator (cook & clement 2019). invisible disabilities include an array of disabilities such as (but not exclusive to) sleeping disorders, learning disabilities, autoimmune diseases and brain injuries (cook & clement 2019; dalgin & ballini 2008; nalavany, crawan & sauber 2015; norstedt 2019). as a result of the absence of physical markers for invisible disabilities, people with invisible disabilities may have to repeatedly decide whether to disclose their disability or not (stone 2005).falch and harnaes (2012) asserted that the general lack of understanding about invisible disabilities often sets up the possibility for a negative reaction or particular barriers, which may result in the individual being ‘labelled’, isolated and excluded once a disability is disclosed (shelton & matthews 2001). practices of exclusion have a deep history in south africa. for instance, during the apartheid regime, persons with disabilities were both marginalised and excluded from society and development initiatives (sangeeth 2016). furthermore, people with disabilities were excluded from primary and secondary education, and these individuals were not prepared for tertiary education. however, within the democratic south africa this has progressed towards more inclusionary practices such as policy initiatives and development. this is specifically aligned with the white paper of 2016, which emphasises a commitment to improve access, inclusion and success for students with disabilities in a higher education setting (department of social development 2016; mutanga 2017). the nature of disability in higher education in south africa in addressing the issue of educational inclusivity at the tertiary level, the department of higher education of south africa’s approach has been particularly influenced by the following legislative documents: the united declaration of human rights (1948), the united nations international convention on the rights of persons with disabilities (uncrpd) (2006), the south african bill of rights (act 108 of 1996) and the white paper on the rights of persons with disabilities (2015). the following issues have been addressed in these documents: firstly, the right of persons with disabilities to have access to tertiary education; secondly, the equality of education provided and thirdly, the issue of reasonable accommodations for those with disabilities, within the tertiary education context. these documents are in accordance with the world health organization’s action plan from 2014 to 2021, which is based on the human rights premise (world health organization 2015). the disability rights charter of south africa has guided the department of higher education and training (dhet 2018). specifically, it states that people with disabilities have the right to mainstream education with personal assistance where necessary, assistive technology and specialised teaching (matshedisho 2007). institutions of higher learning, therefore, need to be proactive in their approach to be inclusive in addressing a range of barriers, such as physical structures, methods of teaching and assessment, as well as sociocultural beliefs (morrison, branda & cilliers 2009). thus, the role and responsibility of disability units within higher education institutions is to provide students with disabilities with equal opportunities that will give them a fair chance of succeeding in their tertiary education (mutanga 2017). there are various higher education institutions that have managed to eliminate some of the physical obstacles, including specific support services, accessible infrastructure and academic materials. several south african universities have specialised disability units in place that work to facilitate and manage support services for students with disabilities (pudaruth, gunputh & singh 2017). however, because of the nature of invisible disabilities, these students have a unique set of challenges resulting in a unique set of experiences (ohajunwa, mckenzie & lorenzo 2015; venville et al. 2016). for instance, a study conducted by mullins and preyde (2013) at a canadian university reported that invisible disabilities are often seen as ‘lesser’ disabilities, as their validity becomes questionable. consequently, thompson-ebanks (2014) reported that owing to lack of reasonable accommodation, there is a notable dropout rate of students with invisible disabilities such as learning disabilities within higher education institutions. considering that symptoms are invisible, much of what is experienced by people with invisible disabilities is often either stigmatised, misunderstood or misperceived (cook & clement 2019). therefore, navigating their daily lives can prove challenging for people with invisible disabilities. according to matthews (2009), lecturers and tutors may not be aware of differently abled students in their classrooms, adding to the challenges that these students face. students with invisible disabilities may not receive the same level of support that their peers with visible disabilities receive (cook et al. 2017; kubiak 2015; shaw 2012; venville et al. 2016). it is therefore imperative that both flexible and visible avenues of support and accommodation are normalised so that students are aware of their availability. students who have disabilities might experience a lack of reasonable accommodation to the extent that they drop out of higher education (thompson-ebanks 2014). although policies of inclusion appear to ease the path of students who have invisible disabilities, their subjective experience illustrates that complex challenges still exist within the accessibility to education. although significant strides have been made to address challenges that are faced by people who have disabilities, students within education settings may continue to be disadvantaged. according to venville et al. (2016), most of the existing support structures implemented at higher education institutions were primarily developed for students with physical and sensory impairment. this places individuals who have invisible disabilities at a disadvantage because of lack of reasonable accommodation in relation to those who have physical disabilities. without the appropriate learning and teaching approaches, mentorship and guidance, these students face a stressful environment at higher education institutions that could potentially compromise their ability to complete their course work and negatively influence their academic performance. there is scant literature on the experiences of students in south african universities who have invisible disabilities compared with other countries such as australia, the united kingdom and the united states of america (bryant 2014; mullins & preyde 2013; mutanga 2017). venville et al. (2016) also highlighted that there is a need to address the effectiveness of existing educational support for students with invisible disabilities. therefore, this study aims to address this gap by exploring the subjective experiences of students with invisible disabilities at a historically disadvantaged university. methods study design and setting in order to explore the subjective experiences of students with invisible disabilities, this study made use of a qualitative, exploratory research design. this was decided to create a coherent narrative from the perspective of a particular cohort; to understand and represent their experiences and actions as they encounter, engage and live through their situations (wagner, kawulich & garner 2012). students were recruited from a historically disadvantaged university in the western cape. study population and sampling strategy participants were recruited using nonprobability sampling methods, specifically, purposive and snowball sampling. a flyer was developed and was initially distributed to the university’s formal disability unit, which provides support for students with disabilities. the invitation was also later opened to the wider university community via the university communication email forum to ensure that all students with invisible disabilities were reached and not only those who were registered with the disability unit. students were included if they were registered students at the university, had an invisible disability and spoke any three of the western cape official languages (english, afrikaans, isixhosa). students who met the set criteria for this study were emailed information letters and consent forms. theoretical saturation was reached at 12 interviews. students were between ages 18 and 50 (mean [m] = 33.92; standard deviation [sd] = ± 12.03), where nine participants were not registered and three were registered with the disability unit on campus (oswd). most of the students were identified using snowball sampling. interestingly, many participants did not believe they needed to be registered with a support unit as they did not feel it was necessary. table 1 presents the participants’ characteristics. twelve students (four men and eight women) with invisible disabilities were interviewed. the participants were between the ages of 18 and 50 years. whilst some of the students were formally registered with the university disability unit, others were not. participants presented with various invisible disabilities as seen here and the length of the diagnosis varied for each participant. table 1: study participants. data collection and analysis semi-structured interviews were conducted online via google meet platform from august to september 2020. this was because of the ongoing coronavirus disease 2019 (covid-19) pandemic, with strict government-mandated lockdown restrictions and safety protocols. verbal and email consent to record all interviews was sought and obtained from all participants. all interviews were conducted in english as all participants were fluent in this language. thematic analysis was employed for this study and themes were identified using an inductive approach. the researchers followed the six-step approach as outlined by clarke and braun (2013): familiarisation with the data, coding, searching for themes, reviewing themes, defining and naming themes and writing up. all interviews were transcribed by the authors. although not every author was involved in each interview, all interviews and transcriptions were reviewed by other authors to ensure confirmability. ethical considerations the researchers received ethical approval to conduct the study from the humanities and social sciences research ethics committee of the university of the western cape (hssrec; hs20/4/49). approval for conducting research with registered students was also sought from the university’s registrar’s office. informed consent was obtained, therefore all participants received an information sheet and consent form to review and provide consent to be interviewed. they were also informed that they could decline or stop the interview at any time without prejudice. should any participant have felt the need for additional support, appropriate referrals would have been provided; however this was not necessary. results this study set out to explore the subjective experiences of people with invisible disabilities at a historically disadvantaged institution. findings brought to light significant results concerning the experiences that students with invisible disabilities in higher education are having. there are three thematic categories that appeared within the data, namely: interpersonal experiences of the student post-diagnosis. the analysis revealed that students are facing various effects of managing an invisible disability both at home and with friends at school. university transition and life experience when students have an invisible disability. this theme explains the experience that students had transitioning into university life, having to disclose their disability and the stigma that may have followed disclosure. furthermore, the covid-19 pandemic also had an impact on the student’s lwid experience of higher education. student experiences of available support for invisible disabilities. data show that most of the students who were interviewed were not registered with the official university support unit for students with disabilities. there was a lack of awareness regarding the disability unit on campus for some. furthermore, participants shared their experience with the available support received or not received from peers, lecturers and university staff members. the interpersonal experiences of the student post-diagnosis amongst the participants, there were a multitude of diagnoses that were considered ‘invisible’, that is, their impediments are not immediately and physically apparent to all. the majority of these diagnoses were psychological in nature, ranging from mood disorders (such as bipolar disorder, major depressive disorder and generalised anxiety disorder) to neuropsychological or behavioural disorders such as autism spectrum disorder and attention deficit (hyperactivity) disorder. in addition, other participants have been diagnosed with epilepsy, arthritis, visual impairments and sickle cell disease. each disability is unique and is influenced by a complex interaction of intrapersonal, interpersonal and contextual factors. this ultimately influences the experiences of each person with an invisible disability within the context of their tertiary studies. some students had been diagnosed as recently as within the 12 months before the interview and others up to 40 years ago. it was evident that the amount of time between their disability and treatment significantly influenced the participants’ level of reflection and engagement. the following themes describe these experiences. effects of managing an invisible disability personal challenges relating to invisible disabilities varied greatly from physical to psychological amongst the participants in the sample. however, there were similarities in some aspects of their experiences in coping with an invisible disability whilst at university, which may not be immediately visible to others. some reported extreme emotional challenges, with the added physical constraints relating to prescribed medications. for example, participants with bipolar mood disorder and major depressive disorder asserted that their emotional challenges have, at times, been debilitating, owing to the side effects of medications and hospitalisation. this is seen in the given extracts: ‘i think under her care i have attempted suicide about two or three times. but the last time was when she decided to have me committed.’ (participant 1; 40 [age]; male, mood disorder, bipolar and attention deficit hyperactivity disorder [adhd], registered) ‘i was hospitalised. i was in a metal health facility for two weeks.’ (participant 2; 50 [age]; male, visual impairment, not registered) these diagnoses have resulted in a necessity for them to take medication. students often had to adhere to prescribed medications that impaired their cognitive and physical abilities. for instance, taking medication to improve their condition often resulted in negative side effects such as lapses in memory, anxiety and inability to concentrate or complete tasks, which caused further emotional distress. this is expressed in the following extracts: ‘you are always on medication. so that’s it. you always get sick, so because of that i was absent from school. it’s been a sick life that’s what i’ll call it.’ (participant 3; 23 [age]; female, bipolar type 1, generalised anxiety, not registered) ‘… the symptoms were a lot more, so you know thinking like this, there’s like gaps, you forget words, you know, you’d be doing one thing and the next thing you find yourself doing something else….’ (participant 6; 50 [age]; female; add; not registered) these psychological and physical factors were strongly associated with complex social interactions experienced by participants in their daily lives, such as exchanges with peers, their social lives and experiences at school. this was further exacerbated by the medical costs relating to managing their disability: ‘…i mean, at that time you are growing. i mean, you are 18, 19, 20 and i would see people going out and having a drink and i would want that release but i couldn’t. i couldn’t make myself do normal things….’ (participant 11; 22 [age]; male; anxiety; not registered) ‘…i was absent from school; i was losing out, you know … i was losing out as a young girl who is always sick at home, that was also a problem on the social cost … and then another challenge is the medical costs, you know, medication is expensive, the medical services are expensive….’ (participant 4; 41 [age]; female; sickle cell disease; registered) students who are unable to engage in daily schooling and social life often have negative social experiences. some of the experiences related to ridicule experienced from friends and peers for their diagnoses. in addition, not being able to engage in social activities seems to bear on students’ efficacy in completing tasks as well. this is explained as follows: ‘…they would demoralise you; they would mock you because you can’t walk or because you get sick at school. your friends will not understand. maybe the teacher only, but your friends they don’t understand….’ (participant 4; 41 [age]; female; sickle cell disease; registered) ‘[… i]f it was something that had an impact on your eye then i couldn’t do it, that was the difficulty, i must admit….’ (participant 5; 28 [age]; female; autism, bipolar disorder 2; adhd; not registered) although some of these experiences occurred outside of the university environment, it also provides a bit of context in which people with invisible disabilities may reflect and react when entering university life. it provides insight into the life of those who have disabilities which are not immediately perceptible to others. these experiences frames further experiences later on. the university transition and life experience when students have an invisible disability the following section will present the different aspects that influence the student’s experience of higher education. these aspects include the transition process into university and the challenges, both experienced with micro aggressions and disclosure. the transition process the transition process varied across participants and was influenced by factors such as their self-esteem, being enrolled part-time or full-time, having recently completed high school or having worked before commencing their studies. students also stated that the different contexts they came from greatly influenced their transition to university. contextual factors beyond the university (such as family and community support) which increase or decrease the ability to cope with the demands of tertiary education differed across the participants and impacted the various experiences of students’ transition to university life. the participants in this study expressed that they had difficulties to manage the university workload due to their disabilities, thus leading to procrastination and feelings of anxiety: ‘…i’d never be studying and i’d always panic and leave things to the last minute and be very paranoid and lose it and be completely anxiety-driven and that’s how we operate, you procrastinate until you actually have enough dopamine released to actually do something….’ (participant 6; 50 [age]; female; add; not registered) ‘academically it was a little bit tough, because with my adhd i only got diagnosed i think in like my early 30s or something … theory-wise i struggled, the textbooks became overwhelming.’ (participant 8; 40 [age]; female; bipolar, adhd, autoimmune; not registered) perceptions on disclosing their disability disclosing an invisible disability was challenging for some participants. for some. these challenges contributed to students’ reluctance to disclose their conditions to lecturers, university staff members and peers. the issue of disclosure is described as ongoing in nature, because they may find themselves having to disclose their disability to various groups of people within the university environment. some students opt to not disclose their condition to their lecturers at university if they do not deem it necessary. whilst some students choose to not disclose their invisible disability, other students experience feelings of frustration and find it difficult to disclose the nature of their condition: ‘[… i]t’s very difficult for me to disclose it now … and i don’t know if my behaviour is challenging to the academic and administrative staff and sometimes, you know, i get very frustrated and i’m thinking, is it me or is it the system? and i get quite defensive … and i think, well, is this just about me. and then i don’t want to use it as an excuse but it’s a reality and i don’t know if that reality is dismissible….’ (participant 6; 50 [age]; female; add; not registered) ‘it is really difficult to explain a condition that people don’t see…and something that just starts. it’s been a challenge to explain.’ (participant 4; 41 [age]; female; sickle cell disease; registered) these emotions are linked to concerns regarding the way other individuals would receive their diagnosis of their invisible disability and the attitudes and behaviours of those within the university setting towards the student. these concerns and fears are expressed in the following experiences of students: ‘…it’s not really supporting me, i mean, if they are not aware of it, how can they? so they can’t make an overt attempt to support me in any way because there’s been no disclosure….’ (participant 6; 50 [age]; female; add; not registered) ‘…but i haven’t necessarily disclosed it to any of my lecturers in simple terms of like i have bipolar disorder you might not see me sometimes but especially a, he knows sometimes i’m just like i’m not in and then he’ll help out where he can…’ (participant 3; 23 [age]; female; bipolar type 1, generalised anxiety; not registered) stigma related to disclosure is the challenge of stigma. students reported the fear of judgement associated with disclosing their conditions. some students even reported that having an invisible disability was often considered to be taboo and they cautioned against making their conditions known for fear of being perceived and treated differently by others: ‘[…p]eople in my support group who advise each other, don’t tell people you have bipolar, and it’s just because of the judgement that comes with it….’ (participant 8; 40 [age]; female; bipolar, adhd, autoimmune; not registered) it is evident that students are deterred from sharing the nature of their disability, which consequently affects the support they may receive within the university setting: ‘…i think it’s a fear of being judged by the next person…like how is this person gonna perceive me….’ (participant 7; 47 [age]; female; major depressive disorder [mdd], anxiety; not registered) ‘[…t]he fact that i don’t even know that my university has support if there is any for people in my circumstances, just says that there is still a stigmatisation about this….’ (participant 8; 40 [age]; female; bipolar, adhd, autoimmune; not registered) personal and social factors are associated with issues regarding disclosure, which exacerbates the experience of having an invisible disability. this might also relate to the first theme regarding the understanding of having an invisible disability in a personal context. experiences of learning during a pandemic with an invisible disability the perceptions held by university staff and students’ peers and the general lack of knowledge regarding invisible disabilities greatly impact students’ willingness to be vocal about their invisible disabilities. findings also revealed that the current covid-19 pandemic had an effect on students’ academic experience. during the lockdown period, it was easy to adjust to the online education platform for some students, but a stressful experience for others who were dependent on in-person contact classes. as such, some students had more positive experiences: ‘[…i]f [the university] actually maintained its online presence it would be a big game-changer. it would take a lot of the stress away and the anxiety away from the university experience and day to day….’ (participant 3; 23 [age]; female; bipolar type 1, generalised anxiety; not registered) ‘…what i have been impressed with is that there’s been a lot of communication during covid-19 about support and that’s more welcomed. you know that it’s there, and my interest is also around wellness that … it just appears that there aren’t enough opportunities on a wellness level and that seems to have come to fruition during covid-19, so there’s been a lot more communication from that department….’ (participant 6; 50 [age]; female; add; not registered) ‘[…t]he truth … from the university side it’s been a general care for us, apart from the erratic internets, we have been served with some food, soaps … so even though it was not directly coming from the office with students with disabilities, we have been cared for, that talks to covid-19….’ (participant 4; 41 [age]; female; sickle cell disease; registered) on the one hand, some participants perceived the lockdown as a protective factor which buffered the anxieties they experienced being on campus. on the other hand, some participants experienced the national lockdown to have profound negative effects on their mental well-being: ‘…so, i guess also lockdown, being isolated in one place was a huge challenge because i’m used to moving around, i’m used to exercising, i’m a project manager so running around all the time. then having to be isolated from people and … engagement was … detrimental to how my brain functions….’ (participant 6; 50 [age]; female; add; not registered) ‘[t]hat is one of the disadvantages that in facing now i have no human support in my studies anymore … i mean, you just think about how disconnected you feel from an academic society when even every lecture is prerecorded.’ (participant 8; 40 [age]; female; bipolar, autoimmune, adhd; not registered) although students’ needs were as varied as their invisible disabilities, all students longed for understanding and acceptance from their colleagues and lecturers. student experiences of available support for their invisible disabilities the participants had various opinions regarding the support they received from the university staff members, lecturers and other peers. opinions range from students feeling their unique needs were accommodated by the university to others feeling that this was not the case, as some challenges were experienced such as accommodation in the classroom specific to different students’ needs. within this thematic domain are themes associated with participants’ awareness of the unit, staff members’ awareness and sensitivities towards people with invisible disabilities and the support students’ received or experienced. lack of awareness of the disability unit interestingly, findings suggest that most of the participants were not aware of the disability unit on campus and were not registered. therefore, these students could not receive the benefits of the disability unit. similar responses also reflected that some students had heard about the unit, but there was no further interest in formally registering, as seen in the following responses: ‘…no… i am not aware… i just read in one of [the university’s] communications about this… just a random email that i saw… but i am not sure where they are on campus, which services they offer or whatever ….’ (participant 7; 47 [age]; female; major depressive disorder, anxiety; not registered) ‘[…t]he fact that i don’t even know that my university has support if there is any for people in my circumstances, just says that there is still a stigmatisation about this….’ (participant 8; 40 [age]; female; bipolar, adhd, autoimmune; not registered) ‘[…o]kay, they are in the same building as the health services [oswd unit], right? … i discovered them, not out of my personal interest for that, but i’m also involved or was, i was enquiring about access to the beach for disabled students. yeah, so i know where it is, like i said, i’ve never considered my condition as a disability … yeah, so i don’t know what services they offer but i know the department exists….”’ (participant 6; 50 [age]; female; add, not registered) other students indicated that they were aware of the disability unit but did not feel the need to use the facilities offered by the unit. some students also lost hope as they perceived the support offered by the unit as ineffective to their distress: ‘…it was more of a safety net for me, i don’t use any extra time or any of the stuff they offer or really go to the psychologists on campus, i don’t use any of their facilities….’ (participant 2; 50 [age]; male; blind in left eye, 20% peripheral vision, cannot see in 3d; not registered) ‘…a tutor of mine recommended me to a psychologist. i spoke to someone from reslife, but there was never a tangible change that i felt. so i lost hope in these people….’ (participant 11; 22 [age]; male; anxiety; not registered) it would seem that there were mixed experiences regarding participants’ perceptions, challenges and whether the students required additional support. academic support those participants who were able to access the support unit felt adequately supported and accommodated. here they expressed satisfaction with the level of accommodation they received from the university; however, it is worth noting that these students are registered with the support unit and have disclosed their invisible disability with staff members and lecturers. as such, for those who have not accessed the official support structures of the university, the stigma attached to disclosure can possibly lead to students not receiving the support they need and ultimately experiencing further challenges within the higher education environment. some participants believed that there was a lack of awareness or sensitivity to people with both visible and invisible disabilities. this belief also left participants experiencing a lack of appropriate support from academic and support staff with whom they interacted daily. this may lead to feelings of neglect in students and a negative experience of higher learning or feeling that they do not require as much accommodation as someone whose challenges are more visible: ‘[…i]n fact the only place that i don’t get support from for this is in my studies, which is currently actually a big thing.’ (participant 8; 40 [age]; female; bipolar, adhd, autoimmune; not registered) ‘…hence i said i come from a place where everybody understands me. so if the university could offer me a listening ear, that could be accommodative and understanding of the type of person i am so that i can break this chain that has been withholding me from engaging with other people. so i think the university could offer me a unique psychologist that would put everything aside and deal with me and understand me. because this problem of mine is really hindering me….’ (participant 11; 22 [age]; male; anxiety; not registered) ‘…where the university fails is having the necessary instrumentation available for people like myself who are partially sighted and the university also makes the mistake in my case, to assume that i can see….’ (participant 5; 28 [age]; female; autism, bipolar disorder 2, adhd; not registered) participant 11 was not registered with the disability unit on campus but he was aware of the unit. however, the lack of support does not only exist in the context of higher education but within the individual’s family lives as well. the lack of support experienced by students with an invisible disability seems to be linked to disclosure, where on the one hand if a student does not disclose their invisible disability status, they face feelings associated with lack of support, namely feelings of neglect or being excluded; on the other hand, if students disclose their invisible disability status they face the possibility of stigma. this is a major challenge in the lives of students with an invisible disability in the context of higher education. discussion students with invisible disabilities’ transition into university can be challenging. although certain policies in south africa advocate for the rights of individuals with disabilities in mainstream education, students often still experience various challenges when they enter the university environment (matshedisho 2007). moreover, as venville et al. (2016) suggested, most existing support structures are developed for those with physical and sensory disabilities. this calls into question a gap in knowledge and approaches to what reasonable accommodation can look like for students with an invisible disability. as suggested by our findings, there are varying degrees of disabilities, which all require individualised attention, and this is evident in the extracts that have been provided by students. the university’s support unit for students with disabilities on campus serves to accommodate students with disabilities. however, there are some students that are not aware of or choose to not register with this unit on campus, and for this reason have not received any of the benefits that they offer to students with disabilities. for those who were aware of the unit, they did not feel they needed assistance and therefore did not register, or merely used registration as a ‘safety net’ in case they missed classes or tests because of their illness. this is also aligned with the findings of stone (2005), who qualitatively explored young women’s experiences of living with their invisible disabilities poststroke. the study presents findings that indicate that for some with invisible disabilities, there is a sense that their disability is not ‘as bad as’ those with visible disabilities and only those with visible disabilities are ‘worth taking seriously’ (p. 303). it is evident that the challenges they experienced might at times be debilitating, owing to the effects of the prescribed medications. some participants discussed having been prescribed medications to manage symptoms of the disability (participant 3 and participant 6) but experienced negative consequences in their academic life, such as lapses in memory, anxiety and inability to concentrate or complete tasks. this also affected the quality of their social interaction with peers and general well-being in consideration of the financial implications and costs of this medication. when an individual receives a diagnosis for a disability regarded as ‘invisible’, it can significantly impact their academic journey and may unfortunately go unnoticed because it is not ‘obvious’. should these participants also choose not to register with the university’s support unit, they might face a situation where they have to disclose their disability each time. participants (specifically participants 7 and 8) expressed that disclosure is an ongoing personal debate as a student. as a result, fear of stigma essentially leads to lack of disclosure and this may negatively impact the academic support, peer support and necessary accommodations and provisions made available for students with invisible disabilities according to their individual needs. this may be because of a lack of knowledge regarding the purpose of the disability unit and notions of what help may look like in the context of higher education, which facilitated reluctance to use the services. unfortunately, there are some consequences to not disclosing to the university, such as not receiving the help they need when facing complex challenges on campus and beyond. as mentioned by participants 6–8 and according to côté (2009), it is often the fear of stigma and being judged by others that causes an individual to conceal their invisible disability. furthermore, the general lack of awareness and understanding about invisible disabilities often sets up the possibility of the individual being ‘labelled’ once a disability is disclosed (shelton & matthews 2001). not disclosing one’s invisible disability because of fear of being labelled denies that student from receiving the appropriate guidance and benefits from the disability unit on campus. therefore, the phenomenon of disclosure is directly linked to the awareness that students have of the disability unit and the potential benefits they can gain from this unit within their academic journey. thus, it is imperative that both student and staff (academic and support) are sensitised towards issues of disability in order to avoid possible stigmas or discriminatory behaviours. a common perception of participants was that staff members and lecturers of the university were not aware of certain invisible disabilities and did not know how to appropriately accommodate these students. a lack of awareness amongst staff will directly influence the academic experience of these students as they are not receiving the appropriate support they need to have a fair experience and reach their full potential in the respective courses. there also appeared a lack of awareness amongst fellow students and administration staff. however, the overarching theme was the implications of staff not being equipped with the appropriate knowledge of how to accommodate students with invisible disabilities in their classrooms. researchers found within the data that participants had opposing views on the amount of support that they receive from the university staff members, lecturers and other peers. furthermore, the unforeseen pandemic and national lockdown has forced institutions of learning to embrace blended approaches to learning and teaching. these approaches have been met with enthusiasm by some who have experienced being more supported, given their disability. this type of blended approach (infusing technology and being able to access lecture recordings and notes online) can be beneficial for those who especially suffer from invisible disabilities such as anxiety and attention deficit disorder (add) or those who experience learning delays. on the other hand, some participants had a more negative experience as the pandemic brought an increased sense of anxiety regarding their well-being and health. the interviews took place during the first 4 months of the pandemic, which resulted in many features of learning and higher education still being undetermined. given the south african context, access to stable internet, data, devices and material remains a significant concern by both students and staff. despite the added challenges of the covid-19 pandemic, some students with invisible disabilities also experienced a lack of support. this appeared to be linked to their willingness, comfort with disclosure and the number of years they have had to process and manage their disability. a student that does not disclose their invisible disability may experience feelings associated with a lack of support, such as neglect. on the other hand, if students disclose their invisible disability status, they face the possibility of stigma from peers and staff members. the stigma attached to disclosure leads to an unhealthy cycle of students not receiving the support they need and ultimately experiencing further challenges within the higher education environment. conclusion the purpose of this study was to explore the subjective experiences of students with invisible disabilities at a historically disadvantaged university. the experiences and interpersonal challenges put forward by students speak to the challenges that still exist in higher education. although students’ needs and subjective experiences were as varied as their invisible disabilities, all students in this study longed for understanding and acceptance. the overarching themes were the interpersonal challenges of students with invisible disabilities, their experience of university and the support offered to them by the university. issues such as lack of awareness, sensitivity, disclosure and stigma remain key factors in the challenges and experiences of students with disabilities in higher education. thus, it is imperative that individuals are educated and more mindful towards issues of disability to avoid possible stigmatising or discriminatory behaviours against those who have invisible disabilities. more so, this awareness should be evident in both student–staff interactions and in student–peer interactions. in this way, further academic support can be made available to students with disabilities in the university setting. as many international and national policies and bills are available, such as the white paper on the rights of persons with disabilities (2015), what is now necessary is advocacy for what those policy parameters look like within the context of higher education, and even more so within contexts which might be under-resourced because of sociohistorical legacies. recommendations and limitations of the study the information collected can be used to inform policies within the university and provide guidelines for improvement within higher education institutions to support students with invisible disabilities. based on the study’s findings, future research can consider conducting university-wide research to ascertain attitudes or perceptions of students with invisible disabilities. further research can also potentially focus on intervention efforts to help students with invisible disabilities have a more meaningful university experience. targeted awareness campaigns can also contribute to a better experience for students with invisible disabilities to ensure that other students, academic and administrative staff are made aware of the possible challenges experienced by people with disabilities not immediately visible (e.g., effects of medication, time required to complete projects etc.). this study is not without limitations. firstly, because the study was conducted online and there were time constraints in terms of data collection, processes such as member checks were difficult to complete. furthermore, because of the volatile nature of internet connection, the flow of some of the interviews was interrupted by abrupt internet interferences. this could have had an influence on the information that was shared. another limitation to this study is that half of the study participants were not registered with the disability unit and thus could not speak to the support that they could have received from the specific unit. acknowledgements the authors would like thank the students of the university for agreeing to share their experiences with the researchers. the authors would also like to acknowledge the student support services of the university that assisted in the original research project through providing valuable information regarding the needs for students living with disabilities and referring students for this research. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors contributed to the original research planning and conceptualisation. the data collection, analysis and writing of the final report were conducted by c.l., c.d.b., g.c., j.m., j.n., n.m., w.v.d., y.m. and z.t. furthermore, dr a.p. and dr s.i. served as supervisors for this project, reviewing the report and liaising with stakeholders. all authors contributed to the final manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data supporting the findings of this research are only available upon request from the corresponding author, c.d.b., as the data were derived from participants and will not be publicly available because of the possibility of compromising the confidentiality of the research participants. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references bryant ii, j.d., 2014, ‘the investigation of self-determination in students participating in higher education with an invisible disability’, doctoral thesis, lindenwood university, st charles, mo. clarke, v. & braun, v., 2013, ‘teaching thematic analysis: overcoming challenges and developing strategies for 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ebook: doing social research: a global context, mcgraw hill, new york, ny. world health organization, 2015, world health statistics 2015, world health organization, geneva. article information authors: lynn cockburn1 timothy n. fanfon2 alexa bramall3 eta m. ngole4, 11 pius kuwoh5 emmanuel anjonga6 brenda m.e. difang7 shirin kiani8 petra s. muso9 navjyot trivedi10 julius sama11 sylvian teboh12 affiliation: 1department of occupational science and occupational therapy, university of toronto, canada2cameroon baptist convention health board, bamenda, cameroon 3undergraduate medical education md program, faculty of medicine, university of toronto, canada 4buildings bridges cameroon (bbcam), yaoundé, cameroon 5director, regional hospital, limbe south west region, cameroon 6centre for inclusion studies, bamenda, cameroon 7bamenda regional hospital, bamenda, cameroon 8handicap international federation, erbil, iraq 9st. elizabeth’s catholic general hospital, shisong, banso, cameroon 10school of physiotherapy, rk university, rajkot, india 11ministry of public health, north west region, cameroon 12st. joseph’s children’s and adults home (sajocah), bafut, cameroon correspondence to: lynn cockburn postal address: suite 160, 500 university avenue toronto, on, canada, m5g 1v7 dates: received: 18 oct. 2013 accepted: 22 may 2014 published: 21 nov. 2014 how to cite this article: cockburn, l., fanfon, t.n., bramall, a., ngole, e.m., kuwoh, p., anjonga, e. et al., 2014, ‘best practice guidelines for stroke in cameroon: an innovative and participatory knowledge translation project’, african journal of disability 3(1), art. #92, 9 pages. http://dx.doi.org/10.4102/ ajod.v3i1.92 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. best practice guidelines for stroke in cameroon: an innovative and participatory knowledge translation project in this original research... open access • abstract • introduction    • background • method    • step 1: constitute the working group    • step 2: determine the scope    • step 3: documentation of current practices    • step 4: search for evidence, revising the process, and deciding to adapt the appraisal of guidelines for research and evaluation (agree) process    • step 5: appraising the evidence    • step 6: draft guidelines external review    • step 7 and step 8: guidelines, distribution and implementation • results    • outcome and recommendations • discussion    • challenges and limitations • recommendations    • future work • conclusion • acknowledgments    • authors’ contributions    • competing interests • references abstract top ↑ background: although the adherence to stroke guidelines in high-income countries has been shown to be associated with improved patient outcomes, the research, development and implementation of rehabilitation related guidelines in african countries is lacking. objectives: the purpose of this article is to describe how a group of front-line practitioners collaborated with academics and students to develop best practice guidelines (bpg) for the management and rehabilitation of stroke in adult patients in cameroon. method: a working group was established and adapted internationally recognised processes for the development of best practice guidelines. the group determined the scope of the guidelines, documented current practices, and critically appraised evidence to develop guidelines relevant to the cameroon context. results: the primary result of this project is best practice guidelines which provided an overview of the provision of stroke rehabilitation services in the region, and made 83 practice recommendations to improve these services. we also report on the successes and challenges encountered during the process, and the working group’s recommendations aimed at encouraging others to consider similar projects. conclusion: this project demonstrated that there is interest and capacity for improving stroke rehabilitation practices and for stroke guideline development in africa. introduction top ↑ background stroke is a sudden loss of blood supply in the brain either due to a blockage (i.e. ischemic stroke) or rupture (i.e. haemorrhagic stroke) (lindsay et al. 2010). it is an acute event that can have a sustained impact on many aspects of patients’ lives (including quality of life) and is associated with significant economic costs (lundström et al. 2010; norrving & kissela 2013). in high-income countries, efforts have been made to address the risk factors of stroke and implement appropriate follow-up procedures to reduce stroke-related disability. however, a lack of attention to the prevention and treatment of stroke in low-income and middle-income countries (lmics), including those in africa, over the last four decades has caused the incidence of stroke to rise (feigin et al. 2009). whilst high-income countries have recorded a combined 42% reduction in stroke incidence, there has been an increase in stroke-related burden, morbidity and mortality in lmics (brainin, teuschl & kalra 2007; feigin et al. 2009; norrving & kissela 2013). in african countries, increases in the population risk of stroke owing to hypertension, diabetes, lifestyle changes, demographic transitions and increased longevity, exist with challenges related to health infrastructure and treatment, such as under-detection and economic barriers to treatment (balti et al. 2013; brainin et al. 2007; feigin et al. 2009; ogun et al. 2005). in under-resourced settings like africa, six months poststroke mortality rates are as high as 44% – 47% (garbusinki et al. 2005; ogun et al. 2005). many health and rehabilitation providers in africa face difficult challenges when trying to provide the best quality services to their patients. causes and challenges of these high rates include lack of human and material resources and poor infrastructure, such as inadequately equipped health facilities, electrical power and telecommunications systems as well as transportation systems (garbusinki et al. 2005). in addition, opportunities for professional development are few, caseloads large and payment or incentives for the development of appropriate guidelines are low or non-existent. the situation for stroke rehabilitation has been particularly neglected in practice and research in africa (kolapo & vento 2011). however, outcomes can be improved and mortality rates reduced by introducing multidisciplinary stroke units and postdischarge community-based rehabilitation to sustain early gains in neurological function. although poorly staffed health facilities and heavy caseloads are major reasons for decreased health care quality, a recent study carried out in rural tanzania revealed that an increase in workforce alone was unlikely to improve quality of care (maestad, torsvik & aakvik 2010). when both knowledge gaps and motivation of health care staff are addressed, performance can improve (leonard & masatu 2010). one strategy successfully applied to improve the skills of health workers and quality of care globally is the use of best practice, practitioner-friendly, evidence-based guidelines (baker et al. 2012; manchikanti 2008; qaseem et al. 2012; reker et al. 2002; woolf et al. 1999). although the adherence to postacute stroke rehabilitation guidelines in high-income countries has been shown to be associated with improved patient outcomes (duncan et al. 2005), incentives for the development and implementation of guidelines in low-income settings are few (baker et al. 2012; orem et al. 2012; woolf et al. 1999) suggesting more attention should be paid to strategies to support guideline development and uptake, and changes in practice. many barriers to quality of care for stroke patients exist in cameroon, a low-income african country. stroke outcomes are poor due to insufficient qualified health staff, weak and inconsistent multidisciplinary team case management, the lack of stroke units, delays in initiating postacute stroke rehabilitation, and a significant shortage of rehabilitation staff and community-based rehabilitation services (balti et al. 2013; njamnshi et al. 2006). rehabilitation services are offered in a small but growing number of health facilities in the north west region (nwr) of cameroon, one of the ten administrative regions of the country. the purpose of this article is to describe a collaborative effort to develop best practice guidelines (bpg) for the management and rehabilitation of stroke in adult patients in the nwr. we present an overview of the process used to develop the guidelines, the successes and challenges encountered during their development, and end with recommendations and the identification of future work, aimed at encouraging others to consider similar projects in this and similar settings. method top ↑ an eight-stage process was used by an interdisciplinary team to develop these best practice guidelines for stroke. the group was part of a larger initiative in which guidelines addressing other topics were also being developed. therefore, this eight-stage process was determined in advance of beginning work on the guidelines as part of the larger project, and was based on internationally accepted recommendations on how to develop best practice guidelines (atkins et al. 2004; grimshaw, eccles & russell 1995; national health and medical research council [nhmrc] 1999; national institute for health and clinical excellence [nice] 2007; new zealand guidelines group [nzgg] 2001; scottish intercollegiate guideline network [sign] 2004). however, it was recognised that the process could be adapted by each team. the eight stages were: • identify and constitute working groups • determine the scope and clinical questions • documentation of current practices • conduct systematic research for evidence • critical appraisal the evidence • draft guidelines and external review • finalise the guidelines • implementation and evaluation of the bpg. although the project is presented as a chronological process of eight stages, it is important to note that it was necessary to move backwards and forwards in the process or to revisit previously completed stages in light of new information, for example, returning to refine the scope statement or to update understandings of current local practices. the process described here took about four years; meetings were held 3–7 times per year. step 1: constitute the working group when the project began, the first author called a meeting of experienced rehabilitation service providers and programme managers in the region who were identified as potential group members. there was a small pool of people to draw from – in the region at that time there were approximately four physiotherapists who were experienced in stroke rehabilitation, less than 10 community-based rehabilitation providers, and no occupational therapists or speech therapists. at the time there were no established health sciences university programmes or dedicated stroke units in the region. the group initially had four members. working group members were included if they had educational and professional backgrounds in the areas of stroke rehabilitation, and their availability to commit to the project. two of the physiotherapists agreed to be co-leaders for the group. doctors who expressed interest were also invited to join the group. canadian volunteers (i.e. occupational therapists and a medical student) also participated in the project. over the course of the project, the number of active working group members was between 6 and 10 members. the group included physical therapists, occupational therapists, physical therapy assistants, physicians, public health policy development and programme implementation specialists, researchers, and research students (see table 1 for more details about the backgrounds of group members). table 1: working group members’ professional background and domain of expertise. within the group, encouragement and support from members and from the project leadership was instrumental in sustaining involvement and confidence in the process. because none of the initial participants had direct experience in this type of guideline use or development, it took several meetings to develop an understanding of the expectations and projected outcome of the project. with time, members came to understand the goals of the project and stronger commitments to both the process and the outcome were made. step 2: determine the scope in keeping with accepted practice in guideline development, the next step was for the working group to decide on what the guidelines would address, and what they would not address. the final scope statement is presented in box 1. box 1: scope statement. the guidelines provide best practice recommendations related to rehabilitation for the early stages of stroke for adults in the north-west region  (nwr) of cameroon. the scope of the guidelines includes practices related to assessment, referral, management, and rehabilitation from the time the stroke occurs to approximately six months after. both ischemic and haemorrhagic stroke are included. the group decided to focus on adults, as the needs of children can be quite different from adults, and felt that a separate guideline should be developed for children. at first, the guidelines scope was limited to stroke rehabilitation, mainly because the initial intention was the development of guidelines for the improvement of stroke rehabilitation outcomes. as time went on, and based on clinical experiences expressed by working group members on patient needs, the group decided to include some aspects of assessment and management. it became clear during group discussions that in this practice context diagnosis and management of acute stroke were closely linked with early rehabilitation practices, not distinct. there were no other stroke guidelines for this setting. however, this decision presented another dilemma: the group recognised that whilst there was a need to fill the existing gaps in guidelines for diverse aspects of stroke care in cameroon in general, and in the nwr in particular, not all aspects could be handled in these guidelines given the resources available. group members revisited and debated the scope of the guidelines several times, always keeping in mind the goal of having a real impact on meeting the needs of patients and also considering the available resources. although acute often means within the first month poststroke (lindsay et al. 2010), the group discussed this terminology and felt that in this context ‘acute’ was interpreted to mean from onset up to six months. step 3: documentation of current practices in order to create guidelines appropriate to a local context, current practices need to be understood and documented. to do so, group members shared their familiarity with current practices, talked with colleagues, and reflected on what they had learned from clients and the family members of stroke patients. in 2009, when we started to collect information about the services provided for stroke patients, there did not appear to be a systematic referral system for stroke patients or any dedicated stroke units in the region.systematic searches were conducted for literature about stroke rehabilitation in the nwr, and in cameroon generally, using the university of toronto databases and google scholar. no research articles were identified. the results of these discussions were written up in the guidelines document under ‘current situation and current practices in the north west region’ to guide the next steps of the process; in 2012, this section was updated. as of 2012, there were 19 health districts with 337 health units in the nwr. these included hospitals, medicalised health centres (i.e. those that have a doctor) and health centres without doctors, many of which were in rural and remote areas. although none of the health units were dedicated to stroke care or had a stroke unit, and just a handful provided specific stroke rehabilitation programmes, all could receive people experiencing a stroke. of these health units, we were aware of six institutions that provided stroke rehabilitation services. each of these six institutions had at least one physiotherapist and physiotherapy assistants. step 4: search for evidence, revising the process, and deciding to adapt the appraisal of guidelines for research and evaluation (agree) process once there was a clearer understanding of what the current situation was, the group identified key questions and areas of focus, and embarked on a systematic literature search using electronic databases (medline, pubmed and google scholar) to learn more about possible answers. because the body of literature related to stroke is extremely large, the search was focussed on identifying research evidence especially from cameroon and africa, with relevant articles from europe and north america as needed. the search terms used included the terms stroke, cerebral vascular accident, cerebrovascular accident (cva), cameroon and africa. from identified articles two additional strategies were used: reference lists of retrieved articles were also read, and the names of key authors were also used as search terms. evidence from articles primarily addressing stroke from cameroon and other africa countries was reviewed to identify any key information or recommendations that could contribute to formulation of the guidelines, and to assist the working group to become more familiar with this body of research. this resulted in a list of 32 articles that had direct relevance to stroke rehabilitation in cameroon. the guideline development process initially used by the group began with the assumption that the working group would collect and review evidence to develop the practice guidelines. however, it became clear that many guidelines related to stroke had already been developed, and so it was decided to use the agree process, a well-established method to select and adapt publicly available guidelines (agree collaboration 2003) and to base our guidelines on these. the process for selecting guidelines is included as an appendix in the stroke guidelines document, including the scoring process used. our priority was to look for guidelines from lmic (low-income and middle-income countries) to reflect as closely as possible the context of cameroon, and which could be accessed online. guidelines from africa would be most relevant, followed by guidelines from other lmic, such as in parts of asia and south america. we were able to identify one african stroke guideline from south africa (bryer et al. 2011). although there are guidelines from china and other asian regions, these are not available to the public. we were able to access guidelines from the philippines as well as from singapore (singapore ministry of health 2009). a second priority was to incorporate a document not from a lmic but as an example of a recent guideline of high quality. the stroke canada guidelines (lindsay et al. 2010) were recent at the time, and are a synopsis of existing guidelines from the american academy of neurology, other canadian and american organisations, chinese stroke trials, and guidelines from australia, new zealand, and the scottish intercollegiate guidelines network. we therefore chose this guideline because it covered a very broad range of guidelines from around the world and incorporated important points from multiple sources and different international perspectives. the authors of this guideline also followed the agree process for drafting the full canadian stroke guidelines. through this process we identified four published guidelines to adapt canada, philippines, singapore and south africa and several research articles to review, for the guidelines document which we were preparing. step 5: appraising the evidence recommendations applicable to the local context were selected and progressively adapted. these recommendations came from both the four identified guidelines documents identified in step 4 and the research articles. recommendations were graded as a, b, c and d, adapted from the four levels of evidence, used by the scottish intercollegiate guidelines network (sign 2004). level a evidence was the strongest, with recommendations derived from randomised control trials. levels b, c, and d were used to indicate how strong the evidence was based on other published work, expert opinion, and formal consensus of local experts and stakeholders, respectively. each draft recommendation from the four source guidelines was discussed in detail by the members of the group with respect to evidence, and for applicability and adaptation to the local context until consensus was reached. this process took place over the course of several face-to-face meetings and through the use of written comments on draft documents. in some instances the recommendation was agreed on as stated, for others, it was revised to be more relevant. there was significant discussion about the recommended health facility level for each guideline. if the group felt that the original intent of a recommendation could not be maintained, the recommendation was removed. having four guideline documents was also useful for deciding how to present the final document. by comparing the four documents, the organisational structure for the guidelines document was also considered. the guidelines were reformatted until members felt that they were reflective of the health system in the region. at the end of step 5, a draft document was developed for external review. this document had the main categories seen in the final document. step 6: draft guidelines external review seventeen experts, with local and international experience, were approached to critically review the guidelines, emphasising the applicability to the local context (see table 2 for their locations and professional backgrounds). reviewers were identified by their publications or because they were known to the members of the working group. suggestions made by the reviewers were discussed and changes made; the final guidelines document was the outcome of step 6 and is available at http://icdr.utoronto.ca table 2: reviewer characteristics. step 7 and step 8: guidelines, distribution and implementation the final stages of the process are to distribute, implement, and facilitate the use of the best practice guidelines, and this has been underway since 2013. to make improvements in stroke services within the region, the guidelines are being distributed to the ministry of public health, hospitals, and institutions providing stroke rehabilitation services, general practitioners, community-based rehabilitation programmes, educational programmes, and other health related programmes in the region. currently, funding is not available for a large-scale dissemination effort or to systematically monitor the uptake. the guidelines are available in hard copy and in soft copy for those who have computer access (many front-line providers have no or very limited computer access). funds are being sought to support the ministry of public health and service providers to carry out training workshops for users and to assess the ease of use and impact. the development of a more user friendly format, such as application for mobile devices, is a goal for future work. we are exploring ways to develop learning communities of practitioners, because these kinds of opportunities were identified by the members as important. results top ↑ outcome and recommendations as indicated above, the key outcome of the project is a document titled ‘best practice guidelines for the management and rehabilitation of stroke in the north west region of cameroon’. this document provides an overview of the current health infrastructure, locations of organisations and descriptions of human resources providing stroke rehabilitation services, and approximate costs of consultation, admission, and physiotherapy sessions. in total, there are 83 practice recommendations plus recommendations related to implementation of the guidelines. as indicated in table 3, the recommendations are applicable for three types of practice situations and service provision, namely: • inpatient rehabilitation • outpatient rehabilitation • community-based rehabilitation (cbr). there are three sets of additional recommendations specifically for areas identified by experts in the region as priority – dysphagia, depression, and shoulder pain – applicable in all types of settings. annexed to the guidelines are practice oriented tools including a cameroon stroke screening (css) tool developed for use in the nwr based on well-known scales (adams et al. 2007; crocco et al. 2007; hurwitz et al. 2005; kothari et al. 1999; nau et al. 2010; werner 1992), an example of a referral form, a screening tool for depression, and a guide to assessing nutritional status and dysphagia. key outcomes of the project include increased capacity of team members to understand and translate research to practice, significantly improved networking and collaboration amongst stroke rehabilitation providers in the region, and increased interest for adapting the guidelines to other regions and for holding conferences related to stroke and rehabilitation. discussion top ↑ this project began with the goal of following accepted practices for the development of best practice guidelines, whilst adapting the process to an african, low-resourced context. although the process took longer than initially planned, a final guideline document has been produced and is being implemented. despite the many difficulties encountered on the way, the project has provided both tangible and intangible benefits to practitioners, and ultimately to clients. recognising that this was a first experience in evidence-based practice and guideline development for most team members, at the end of the project, the group identifies the importance of taking time to engage in a collective process of reflection. in the first year, many of the managers in the organisations involved did not understand practice guidelines, or the concepts of evidence-based or best practices; now, five years later, team members are encouraged that they have a tangible outcome to share with managers, administers and policy makers, and hope that other opportunities will arise to develop and use guidelines or similar tools in their work. in terms of the implementation of the guidelines, both informal and formal implementation plans and experiences have resulted from this project. informal implementation was evident before the guidelines were completed: changes in practices, such as increased emphasis on team meetings and referrals for rehabilitation, were noticed by the end of the second year, and these changes continued as the project carried on. whilst the literature on guideline development presents a linear process, with guideline implementation following the development process, our experience has been closer to what has been suggested by kolapo and vento (2011:710): changes in practice should be implemented as soon as possible because improvements in stroke care are urgently needed in africa. because these practice changes were not fully anticipated at the beginning of the project, and because the funding for the project did not extend to implementation, we did not have a built-in mechanism for tracking these changes. however, in the process of finalising the guidelines in years 3 and 4, participants reflected on the changes that they had seen in their own learning and practices, and many of these perspectives are included in this article. overall, the participatory approach brought together experienced professionals, researchers, and students, with diverse perspectives and opinions and helped to create a document representing these perspectives and opinions. participants enjoyed the opportunity to learn about best practice guidelines as a systematic approach to dealing with pertinent health care issues. health care infrastructure, human resource issues, and cost of services in the nwr were clarified throughout the guideline development process. having these discussions allowed group members to consider how these systems could be improved, including describing the roles and responsibilities of care providers at each level. some members of the project directly involved in patient care have already begun to implement some of the recommendations in their day to day practice. one of the broader and more fundamental goals of this collaborative work was to support the retention and morale of health and rehabilitation workers in the region. whilst this outcome has not yet been formally evaluated, members of the group talked about improved job satisfaction, pride and confidence in their clinical decision-making in having improved status and leadership in their workplaces, and in having other professional development opportunities arise that they can take advantage of because of their experience in this project. these opportunities included networking with colleagues, presenting at professional conferences, participating in international meetings, and sharing their learning through peer-reviewed articles such as this one. challenges and limitations although there was enthusiasm about the project initially, some participants did not have the time to participate as it was not seen as part of their paid work; most team members volunteered their unpaid time to the project. it took group members several years to comprehend the methodology of the guideline development process, to work through each stage, and to fully understand the expectations at each stage of the process. motivation waned at times; support and encouragement from other group members was critical to sustaining involvement. enthusiasm and participation increased as members saw the guidelines take shape, and when they received positive feedback from colleagues on draft versions. consensus building around a recommendation required considerable discussion, especially when there were diverging perspectives. meetings typically lasted between three and six hours, and were often held on weekends to accommodate busy schedules. it was difficult for busy people to devote time to attend meetings, but many sacrificed their time and effort repeatedly, and found that they enjoyed the spirited discussions. one of the significant benefits of the project was the opportunity for members to learn from each other, to share ideas about best practices, and to learn about what was going on in neighbouring organisations and cities. the outcomes are better because there was adequate time to discuss issues in detail. group members were consistently concerned about the applicability of the guidelines to the nwr. a challenge was to come out with a document that was applicable for the region, and which could possibly be applied in other regions of the country. at times the group found itself going off track to discuss and share information about the current situation in the region or about what was happening in other places; this was seen to a crucial benefit of meeting together. whilst there are substantial gaps between what is recommended in guidelines from wealthy countries compared to what is available to the nwr, having these discussions also assisted members to consider goals and what might be possible in the future for stroke rehabilitation. the group had to combine their professional experiences to adapt the recommendations to the local realities, rather than solely relying on evidence from existing guidelines. given the limitations and restrictions in the health system (echouffo-tcheugui & kengne 2011; tantchou tchoumi & butera 2013) and the fact that there is no ongoing, dedicated budget for dissemination and implementation, group members were also challenged to consider creative and low cost ways of implementing the guidelines. recommendations top ↑ the group makes the following recommendations for others when considering similar initiatives:1. ensure that there is a leadership team committed to the development of locally relevant guidelines and of the inclusion of a wide range members: it is important to take the time to educate all people involved in the project, including key managers and care providers in relevant organisations and policy makers. for example, at times, attempts to involve managers in the organisations involved took longer than expected, and was perceived to be slowing down the project. 2. it is important to create communities of practitioners who are interested in improving health care services: this project was part of a larger initiative learning about best practices and evidence-based practices in rehabilitation in the region, and therefore several people and groups working on different topics came together periodically to share experiences and tools. these broader perspectives helped members to see the benefits of their own efforts and to more easily grasp the processes involved in the development of guidelines. 3. ensure that expectations are discussed and that enough time for extended discussions is allotted within meetings. 4. recognise that many types of expertise and skill are useful. use the experience of volunteer professionals and students to assist with components of the project: the project relied heavily on the many contributions of expert health professional volunteers and students, and could not have been completed without their work. volunteers and students were able to organise meetings, search, and review the literature, participate in evaluation, and contribute substantially to group discussions. 5. allow for sufficient financial resources: this kind of project can be quite costly due to coordination, transportation, and meeting costs, even when leaders and participants are not paid. this was the first time that this team had carried out such a project, so although careful budget forecasting was done at the beginning, the initial funding was not sufficient to carry out the full objectives of the project. future work this project has identified further needs and provided inspiration for new projects such as the following:• need for more educational opportunities about better practices, guidelines, service pathways, and implementation strategies specific to this region and the cameroon context in general: education and professional development is needed due to severe limitations in resources and the very limited opportunities health professionals have to keep up with changes in practice. more attention should be given in local health professional educational programmes to evidence-based and best practices. having succinct and accessible learning tools could have a significant impact on patient outcomes. • lack of research on stroke locally: the group applauds those researchers who are contributing to this body of knowledge, and encourage innovative ways of including front-line professionals, health system managers, and students to develop the knowledge base further. • significant need for research and evaluation on how practice guidelines can be developed, adapted, and implemented for low-income countries: these include a need for more appropriate alternatives to the adaption process recommended by collaborations which are well resourced. for example, there is a need for the development and evaluation of colourful, pocket-sized and soft format (cellular phone) applications that are appropriate to the resources available in this local context. • the need for ongoing implementation and evaluation of these kinds of projects is also evident. • the team was impressed with the commitment shown by the front-line practitioners in this project; projects such as this one should be encouraged to continue by managers and funders: the group willingly shared their reflections, improved understandings and frustrations of how guidelines can be adapted, developed, and used in low-income contexts. conclusion top ↑ this project produced a best practice guideline document on stroke care and rehabilitation in a low-income country. the guidelines have the potential to improve service provision and patient outcomes in the nwr, and in other parts, of cameroon. although it was not possible to formally study its implementation due to the limited resources available to the project team, there is some evidence from this experience that the process of developing guidelines can lead to improved practices and can influence programme managers; this is an area that deserves further exploration and research. the people who were members of this team have a new appreciation for what is required to improve practice: the ability to critique and use evidence, a commitment to dealing with the difficulties which will inevitably arise in a low-resourced context, skills in team facilitation and dedicated collaboration across organisations and disciplines, and the need for sufficient resources to bring people together in various ways. the development of these guidelines by a group of local practitioners, in the context of the larger project, has demonstrated that there is interest and capacity for improved practices in resource-limited contexts which should continue to be supported. acknowledgments top ↑ we are grateful for the encouragement, administrative and professional support of dr ndiforchu a. victor, north west regional delegate, ministry of public health. thank you to mr. julius wango, bamenda coordinating centre for studies in disability and rehabilitation for administrative support. we thank the many reviewers and others who encouraged this project. sources of funding: we acknowledge with gratitude the financial support of the socioeconomic empowerment of persons with disabilities program (seepd) of the cameroon baptist convention health board, the bamenda coordinating centre for studies in disability and rehabilitation (bccsdr), and international centre for disability and rehabilitation-cameroon of the university of toronto. we also acknowledge the many personal contributions that members of the working group made to contribute to these guidelines. authors’ contributions l.c. (university of toronto) led the project; facilitated meetings; led the development of the manuscript for publication. t.n.f. (cameroon baptist convention health board) led the stroke guideline development group; brought significant local expertise to the project; reviewed the manuscript. a.b. (university of toronto) assisted with guideline meetings, development and writing the final version; assisted with writing this manuscript. e.m.n. (buildings bridges cameroon [bbcam] and ministry of public health, cameroon), p.k. (regional hospital, limbe south west region), b.m.e.d. (bamenda regional hospital), p.s.m. (st. elizabeth’s catholic general hospital), n.t. (rk university), j.s. (ministry of public health, cameroon) and s.t. (st. joseph’s children’s and adults home [sajocah]) members of the guideline development group; assisted developing and reviewing the guidelines and this manuscript. e.a. (centre for inclusion studies) and s.k. (handicap international federation) are past project coordinators; members of the guideline development group; assisted with writing and reviewing the guidelines and this manuscript. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced  them in writing this article. references top ↑ adams, h.p. jr., del zopp, g., albert, m.j., bhat, d.l., brass, l., furlan, a. et al., 2007, ‘guidelines for the early management of adults with ischemic stroke: a guideline from the american heart association’, circulation 115, 478–534. http://dx.doi.org/10.1161/circulationaha.107.181486appraisal of guidelines for research and evaluation (agree) collaboration, 2003, ‘development and validation of an international appraisal instrument for assessing the quality of clinical practice guidelines: the agree project’, quality and safety in health care 12(1), 18–23. http://dx.doi.org/10.1136/qhc.12.1.18 atkins, d., best, d., briss, 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40, fraserburg 6960, south africa dates: received: 12 may 2015 accepted: 01 sept. 2015 published: 30 oct. 2015 how to cite this article: cawood, j. & visagie, s., 2015, ‘environmental factors influencing participation of stroke survivors in a western cape setting’, african journal of disability 4(1), art. #198, 9 pages. http://dx.doi.org/10.4102/ajod.v4i1.198 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. environmental factors influencing participation of stroke survivors in a western cape setting in this original research... open access • abstract • introduction • methods       • ethical considerations • results    • products and technology    • natural environment and human-made changes to the environment    • support and relationships    • attitudes    • services, systems and policies • discussion    • study limitations • recommendations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: environmental factors compound or diminish the effects of impairments; therefore they have a direct influence on participation of stroke survivors. objectives: to determine environmental barriers and facilitators to participation experienced by a group of stroke survivors in the western cape province of south africa. methods: a descriptive, mixed methods study was conducted in 2011. quantitative data was collected with the international classification for functioning, disability and health core set for stroke (environmental factors), from 53 stroke survivors, sampled through proportional, stratified, random sampling. data is presented through graphs and tables. qualitative data was collected from five purposively sampled participants and thematically analysed. results: under products and technology, participants regarded assets, food, products and technology for daily living, transportation, mobility and communication, and access to buildings as barriers. the physical geography and attitudes of friends and society created further barriers. with regard to services, systems and policies housing, communication, transport and social services created barriers. health services, as well as support from health care service providers and family were considered facilitators. conclusion: a lack of assets compounded barriers with regard to food, products for daily use, communication and transport. barriers to participation were exacerbated by a lack of services, systems and implementation of policies focused on the inclusion of people with disabilities, as well as minimal access to assistive devices. recommendations include provision of assistive devices, structural changes to houses, yards, roads and buildings, lobbying for accessible, affordable public transport, access audits of public buildings, and inclusion of non-governmental organisations and home-based care services in a seamless network of care. introduction top ↑ stroke is the 5th leading cause of death in south africa and in the western cape province. it accounts for 5% of deaths in the western cape province and 3.5% of deaths nationally (statssa 2011). stroke is also associated with high levels of morbidity. stroke survivors often experience residual impairments, such as weakness, paralysis, spasticity, perceptual, cognitive, speech and language problems. these impairments can impact negatively on their function and participation in life roles (gillen 2011; tipping 2008). impairments are but one component of a complex, dynamic system that impacts on participation and how disability is experienced (bickenbach 2009; shakespeare 2014). environmental factors can compound or diminish the impact of impairments and activity limitations on life roles (kostanjsek 2011; schneidert et al. 2003; world health organisation 2001). the international classification of functioning, disability and health (icf) provides a framework for exploration of the interaction between environmental factors, the health condition, impairments, activity limitations, and their impact on participation (who 2001). according to the icf: ‘environmental factors make up the physical, social and attitudinal environment in which people live and conduct their lives’ (who 2001:171). environmental factors are grouped in five domains: products and technology natural environment and human-made changes to the environment support and relationships attitudes services, systems and policies (who 2001:173–207). knowledge and understanding of environmental facilitators and barriers experienced by various populations around the world can assist policymakers, service providers and people with disabilities in promoting greater participation through utilising existing facilitators, and addressing and minimising barriers (stark 2001). this paper describes environmental barriers and facilitators to participation experienced by a group of stroke survivors in the western cape province of south africa. these stroke survivors were amongst the 71% of the western cape province’s population that access public health care services (day & gray 2013). methods top ↑ this paper presents some of the results of a descriptive, mixed methods study that used a sequential explanatory strategy, that is, qualitative methods were used secondary to quantitative methods to contextualise and explore quantitative findings, and to highlight individual perceptions and experiences as described by kroll, neri & miller (2005) and presented in figure 1. the study was conducted in part of the eastern, subdistrict of the western cape metropole health district. the study population comprised the 223 people older than 18, residing in the study setting, who had experienced a stroke between 1 january 2009 and 31 december 2010, and had accessed public health care services. they were identified from records from hospitals, community health centres (chcs), and non-governmental organisations (ngos). figure 1: diagrammatic presentation of the mixed method design with sequential explanatory strategy. a total of 53 participants were selected to participate in the quantitative phase through proportional, stratified, random sampling (joubert & katzenellenbogen 2007). after consultation with a statistician, the primary author decided that approximately 50 participants would allow completion of the study within a reasonable period (extensive data was collected), while ensuring a sample large enough to allow statistical analysis of data. the five geographical subunits in the study setting were used as strata to ensure that participants from all communities in the study setting were included. the names of stroke survivors in each stratum were listed alphabetically and numbered. a computer programme was used to generate random numbers to select study participants. the number of participants from each stratum was proportional to the total number of names in each. data was collected between march and august 2011 by an occupational therapist. quantitative data was collected with a demographic data coding form and the icf’s core set for stroke (environmental factors). the latter was developed by 39 experts from 12 countries through a systematic review of the literature, a delphi exercise and empirical data collection. it contains 33 categories from the five domains of environmental factors, deemed important to most stroke survivors (geyh et al. 2004). scoring options range from -4 through 0 to 4, where -4 denotes a complete barrier, -3 a severe barrier, -2 a moderate barrier and -1 a mild barrier. a score of 0 indicates that the aspect has no influence on the person’s life. a score of 4 denotes a complete facilitator, 3 a substantial facilitator, 2 a moderate facilitator and 1 a mild facilitator (who 2001). during data collection, the same examples were given to all participants to help them understand the question without creating bias. the aim of the qualitative phase was to seek explanations that could enhance understanding of the quantitative figures (silverman 2013). a heterogeneous group of five participants was purposively sampled for the qualitative phase: two female and three male participants, with ages ranging from 44–69 years. they had varying functional ability from needing assistance with all activities to being totally independent. qualitative data was collected through semi-structured interviews guided by an interview schedule. quantitative and qualitative data was collected on separate occasions. depending on the participant, this was done at the participant’s home or at a central venue. transport was provided for travelling to the central venue. quantitative data was entered onto a spreadsheet from which graphs and tables were drawn. no further statistical analyses were done for this descriptive paper since it was not the purpose to explore causal relationships. qualitative data was analysed according to themes that were predetermined from quantitative findings. ethical considerations participation in the study was voluntary and written informed consent was obtained from every participant. special consideration was given to determining the competence of the stroke survivor to make an informed decision about participation in the study. in instances where the person was not able to give consent, an authorised caregiver gave consent. where proxy consent was given, an indication was obtained from the stroke survivor as to their willingness to participate. participants were assured that all personal information that could divulge their identity would be kept confidential. approval for this study was obtained from the committee for human research at stellenbosch university. permission to acquire the names and contact details of people who had a stroke was obtained from the western cape department of health, the relevant points of service delivery and ngos. results top ↑ the majority of participants (66%) were between 51 and 70 years old (table 1). table 1a: demographic information of participants (n = 53). (percentages have been rounded). table 1b: demographic information of participants (n = 53). (percentages have been rounded). products and technology all but two aspects related to products and technology created barriers to participation for more than 50% of participants (figure 2). almost all participants (89%) indicated a lack of assets (defined by who 2001:181 as ‘products of economic exchange, such as money, goods, property and other valuables that an individual owns or of which he or she has rights of use’) as a barrier. participants indicated that often they could not afford rent, telephone services or food. figure 2: products and technology experienced as barriers and facilitators (n = 53). overall, 77% of participants identified products and technology for personal use in daily living (e.g. clothing, household appliances, furniture and assistive devices) as a barrier. mobility assistive devices were the category of assistive devices most frequently issued to participants (table 2). table 2: assistive devices received by participants (n = 53). a lack of transport created barriers to community participation and accessing services for 80% of participants. the wife of a 54-year-old participant explains: ‘it is so difficult to get to the hospital. i have to ask my son; often he has to put in leave at work to help’. those who could use taxis also experienced challenges. some found the distance from the taxi rank to the hospital too far to walk. a 65-year-old male participant described the taxi drivers as ‘impatient and in a hurry’ and unwilling to help people who needed assistance to embark. although health net services (state-provided transport between health care service facilities) are available, some participants were unaware of this service or how to access it. others reported difficulty in getting to the primary health care service facilities from where this transport departs. there were 38% of participants that were dependent on friends and family for transportation, and 32% had to pay for this ‘service’ (table 3). table 3: transport used by participants (n = 53). in the absence of transport, participants walked or used wheelchairs to access the community. wheelchair users found it difficult to use taxis, which increased transport costs for them: for instance, it cost r100.00 ($8.33) to hire a car for a trip that would cost r14.00 ($1.17) by taxi. several participants commented that flights of stairs at stations in the area created barriers to using trains. products and technology for communication were seen as a barrier by 64% of participants (figure 2). this mainly took the form of being unable to afford phone services or airtime. most participants (94%) had access to a television in their homes, but only 4% had access to computers and email. the majority (60%) of participants were of the opinion that products and technology related to employment were neither a barrier nor facilitator; this was mainly because they were past retirement age (figure 2). participants found the question on design of public buildings difficult to answer, as the majority only left their homes to access health care services or to collect their pension, and these buildings were accessible. overall, 65% rated public buildings in the study setting as being inaccessible, mainly because of steps. one participant, a wheelchair user and avid soccer fan, described how four of his friends collected him every weekend to support club matches. if they needed to get up steps in the stadium, they picked him up in his wheelchair or got other people in the crowd to assist. just over half (53%) of participants considered their homes to be a facilitator, while 48% indicated that steps/stairs, a lack of facilities such as indoor toilets and the size and structure of their homes created barriers (figure 2). natural environment and human-made changes to the environment the geography of their surroundings was perceived as a barrier by 71% of participants. they commented on the difficulty of walking or pushing wheelchairs through sandy soil, over uneven terrain and through potholes. pavements were often lacking or uneven. loose sand (51%) or hard uneven soil (38%) covered most yards, making it difficult to manoeuvre wheelchairs or walk, particularly in the light of poor balance and sensory impairments. support and relationships a positive finding was that 88% of participants felt their immediate family was supportive (figure 3). extended family provided less support. for 23% of participants, a lack of transport and finances prevented contact with extended family living elsewhere. the majority (60%) of participants found acquaintances in the community supportive. during qualitative interviews, participants indicated that due to physical weakness they felt vulnerable and feared being attacked by ‘skollies’ (criminals) or ‘tik gangs’ (drug abusers) in the community. figure 3: support and relationships experienced as barriers and facilitators (n = 53). home-based care services (personal care providers) were limited and 61% of participants did not receive home-based care a lack that 29% of participants saw as a barrier. participants and caregivers showed appreciation of services rendered by health professionals, and 97% of the participants saw assistance by health professionals as a facilitator (figure 3). attitudes the majority of participants (72%) found the attitudes of their immediate family positive (figure 4). however, some participants felt that while family members cared for them, they did it reluctantly and from a sense of duty. figure 4: attitudes experienced as barriers and facilitators (n = 53). the attitudes of community members were regarded a barrier by 47% of participants, and 53% perceived societal attitudes as a barrier. a 79-year-old female stroke survivor reported that people regarded her as ‘mad and incompetent’ after the stroke, which she found extremely hurtful. a 46-year-old male stroke survivor said that after shaking his hand, people would wipe their hands on their own clothing, as if they had touched something contaminated. a small minority of participants (8%) regarded the attitudes of home-based carers (personal care providers) as negative, and were concerned about carers sharing confidential information about their clients with other people. some found them unreliable and reported that they did not always keep appointments. the attitudes of health professionals were seen as a facilitator by 92% of participants (figure 4). services, systems and policies the majority of participants (70%) regarded housing services as a problem (figure 5). they expressed concerns about the lack of housing, the small size and poor quality of government subsidised houses, and the difficulty of getting repairs done. communication services was regarded as a barrier by 63% of participants because of the costs of airtime and landlines, as well as a lack of public telephones and facilities for sending faxes and email. similarly, transport services were regarded as a barrier by most (88%) participants (figure 5). a 60-year-old male participant who was asked what the greatest need of stroke survivors was replied: ‘transport’. figure 5: services, systems and policies experienced as barriers and facilitators (n = 53). nearly half (47%) of the participants indicated that they did not receive assistance from organisations and associations. others mentioned help from a stroke support group (15%), badisa (9%), the society for the aged (6%), and other community and religious organisations. the stroke support group has nine subgroups running in the various communities. those who attend its activities found it supportive and educating: ‘aah!! it means so much to her. before she gets fetched on a monday, she is so excited. she will be dressed early and be ready and waiting. then she will tell me what happened that day’. (husband of 45-year-old participant) ‘and then i read in the newspaper about the stroke support group. that is where i learned the most about stroke. nobody else explained to me. you interact with others. this is when i really started to understand what everything was about’. (60-year-old male participant) ‘you speak to other people who have had the same experience or are worse off than you. i think suddenly my eyes were opened’. (60-year-old male participant) participants had ambivalent feelings about social security services, systems and policies. the regular income was seen as a facilitator by 42% of participants (figure 5). on the other hand, the small amount of money was considered a barrier by 47%, as were the difficulties participants encountered to register for disability grants. specific complaints included: long queues at registration, and people being sent away and told to come back on another day. unfairness: ‘he knows piet, paul and klaas; he knows them. let them through and the rest of us have to stand in the queue’ (husband of 45-year-old participant). delays of several months where the survivor was without income while the paper work was being processed after a temporary disability grant expired. difficulties in securing a doctor’s appointment for completion of the medical forms. fear of lodging complaints. participants feared reprisal and that they would not be assisted. the lack of general social support services and systems (e.g. assistance with activities of daily living, shopping, transport and housework) were identified as a barrier by 87% of participants (figure 5). the need for assistance in this regard is summed up by this participant: ‘it is like a prison sentence. i am actually a prisoner. i want to go to checkers. please take me quickly. checkers is in five minutes walking distance from our house. it is a huge problem. i have to sit and plan how i can get to checkers’. (60-year-old male participant) in another example, a woman’s 14-year-old son had to take off school to collect her medication and take her to the clinic for appointments. with regard to health care services, participants complained about long queues and waiting times: ‘there are just rows and rows of people that sit there’. (60-year-old male participant) ‘if you go to the clinic, you have to be very patient. what i can’t understand is why people have to be there so early and then are only helped in the afternoon’. (husband of 45-year-old participant) ‘usually when i go, i leave the house at 6am or 6.30am. i then get back at about 4.30pm. that is how long i have to sit and wait’. (44-year-old female participant) participants complained about the noise level in waiting rooms and that they could not hear their numbers being called this often meant they missed their turns. despite these complaints, participants were positive about health care providers and services, as shown in figures 3–5. participants acknowledged the shortage of human resources and its effect on service delivery: ‘one must just accept that if you go to the clinic you must take a bag of patience with you!’ (husband of 45-year-old participant) ‘i am not pointing fingers at the doctors, because i think all the doctors are overworked. if you look there, there are hordes of people. it is a hell of a task for them’. (60-year-old male participant) ‘it doesn’t help to be impatient … you must always think about the person helping you. that person has also got things they have to do. if a patient complains and carries on, that person is not going to want to help you. that is why i am always relaxed. i keep calm, because i also consider that person. he has got lots of people he has to help and he is only one person. i am patient, i wait for my turn’. (44-year-old female participant) examples of poor service delivery were mentioned, including lying in urine, being assisted by fellow patients to get to the toilet because nurses were unavailable, dealing with intoxicated service providers, and sustaining a leg injury while being moved in hospital that allegedly resulted in an amputation. challenges caused by scope of practice and lack of a stroke protocol were also mentioned: ‘she [professional nurse] knew exactly what to do, but she waited for instructions. this is something that can result in a patient’s condition deteriorating … if the sister knows she must put up the drip and that it must be put up now. another thought that comes to mind is why is no doctor at the local hospital able to help with a stroke patient in the beginning stage as it starts to take place? surely for the trained eye the symptoms must be known?’ (husband of 45-year-old participant) with regard to municipal services, all participants had access to electrical power, and all but one had access to running water in their homes. however, free quotas of water were finished quickly in large households and participants did not have the finances to pay for additional water. one caregiver whose husband was bedridden and incontinent reported how difficult it was to keep the linen clean with the limited amount of free water. some participants complained about dogs roaming the streets being a barrier to participation: with their poor walking balance they felt vulnerable. these participants were not aware that municipal by-laws prohibit dogs from being on the street unless they are on a lead. discussion top ↑ a lack of assets, as well as transport and mobility created a barrier to participation for the majority of participants. barriers with regard to transport are highlighted both under products and technology, and services, systems and policies. other factors that created barriers to more than 50% of participants included food, products and technology for daily living and communication, access to public buildings, physical geography, attitudes of friends and society, as well as the following services, systems and policies: architecture and construction, housing, communication, associations, and general social support. these findings were similar to those reported by maart et al. (2007) with regard to public buildings and housing, but contrasted in other respects. maart et al. (2007) found that the climate, labour and education services also created barriers to participation in the western cape province. the discrepancies might be due to methodological differences, such as different study populations and the use of a different icf environmental factors tool. in the category of ‘products and technology’, participants experienced more barriers than facilitators overall – largely because of a lack of assets. assets include money, goods (such as property), as well as skills and knowledge that can be used to earn money (who 2001). participants were retired, had lost their ability to earn because of decreased physical and cognitive ability resulting from the stroke, or encountered environmental barriers that prevented them from accessing employment. the lack of assets impacted on access to food, as well as products and technology for daily living, such as furniture and appliances. a number of participants reported a shortage of food and appeared undernourished. in contrast, some participants were overweight. it is recognised that maintaining a correct diet plays an important role in controlling diabetes and hypertension, as well as preventing obesity three of the risk factors for stroke (bryer et al. 2010; mayosi 2013). with regard to products for daily living, furniture (e.g. a sturdy bed with a firm mattress or a table) plays an important role in ensuring optimal positioning post-stroke. correct positioning, in turn, decreases complications like spasticity, pain and contractures, which all impact negatively on function. a lack of assets impacts negatively on people’s ability to access assistive devices and adaptations that can enhance function, and leaves them dependent on rehabilitation services for adaptations and assistive devices. the results show that few assistive devices other than mobility devices were issued. something as simple as a lap tray which is inexpensive, can improve sitting posture, provide a surface for positioning a paralysed arm and a surface on which to eat in circumstances where people have no table was provided to only 6% of participants. one participant had been issued with a bath board to facilitate bath transfers. no other devices such as grabs rails or plastic chairs for the shower, which can enhance safety during washing were issued. in a danish study, sørensen et al. (2003) found that assistive devices to assist with bathing was provided to 63% of participants, and that grab rails were installed in the homes of all of the participants. participants in a swedish study by randström, asplund and svedlund (2012) pointed out the importance of activities such as washing oneself in the promotion of independence and how the provision of assistive devices can assist in achieving this. in the current study (cawood 2012), the inability of many participants (43%) to use the toilet independently caused strain on caregivers and excessive use of nappies. considering that 85% of the homes visited had indoor toilets, it is possible that had grab rails been installed, more people could have been independent in toileting. with retirement, recreational activities can play an increasingly important role in people’s lives. participants enjoyed reading the newspaper, magazines or their bible, but were finding this progressively difficult due to a lack of spectacles. at the time of the study, people had to travel approximately 35–50 km (depending on where they were living) for vision testing and spectacles through government services. participants struggled to access this service. as one 75-year-old male participant said: ‘either you have an appointment and you don’t have the money, or you have the money and you can’t get an appointment’. a further barrier to reading was a lack of additional assistive devices. a 62-year-old participant, who was an avid reader, lost the function of both upper limbs due to multiple strokes. he was no longer able to turn pages, an action that can be accomplished with various assistive devices. all participants who could not walk safely indoors had received wheelchairs. this is a positive finding since other south african studies report a lack of access to wheelchairs (saloojee et al. 2007; visagie, scheffler & schneider 2013). however, other participants probably need a wheelchair for long distances and in situations where terrain was uneven (as described earlier) to ensure community mobility (greer, brasure & wilt 2012). another assistive device recognised (gillen 2011) as improving ambulation in stroke survivors with weak dorsiflexion is an ankle foot orthosis (afo). only one participant had received an afo. considering that 68% of participants had been issued with walking aids, it is probable that more of them would have benefited from an afo. maleka, stewart and hale (2012) found community mobility challenging for stroke survivors in a study done in rural limpopo and urban gauteng provinces. the current study supports maleka et al.’s findings that the cost of transport was greatly increased because participants could not use taxis and trains. minibus taxis are the main means of transport for poorer communities in south africa. as described by other authors, the taxi operators are pressed for time and space (chakwizira et al. 2010; kahonde, mlenzana & rhoda 2010; ntamo, buso & longo-mbenza 2013). thus they might prefer not to stop for someone in a wheelchair since the person takes longer to embark and disembark and the wheelchair occupies the space of an extra passenger. in addition, taxis drive specific routes and participants have to walk to a taxi rank or the route to use the taxi instead of being picked up at home. the results of the current study showed the high cost of hiring private transport, as also demonstrated by kahonde et al. (2010). in the light of the lack of assets, this might be unaffordable for some. another negative consequence of insufficient assets was a lack of access to phone services. apart from diminishing contact with loved ones, this left participants without a ready means of contacting emergency services. it also creates difficulties for health care services providers to confirm appointments and inform people of pathology results. the need for specialised communication devices amongst persons who had a stroke might be less than for other types of assistive devices (bouffioulx, arnould & thonnard 2011; sørensen et al. 2003), and sophisticated computerised communication devices are not always effective for aphasic clients with cognitive impairments. however, basic pictographic communication boards can improve communication for those who experience problems with expressing themselves (howe 2008). with regard to housing, steps at the front and back door and uneven and sandy terrain created challenges for both wheelchair users and ambulant stroke survivors. in addition, homes were generally small and crowded, and there was insufficient space to manoeuvre wheelchairs. these barriers highlight the importance of therapists obtaining detailed information on the home environment, and engaging with municipal authorities, caregivers and families with regard to the necessity of ramps, paved pathways and the most suitable products to use. entrances to the homes of 89% of participants in the danish study by sørensen et al. (2003) were modified, while adaptations were made in the case of 16% of participants in a belgium study by bouffioulx et al. (2011). it was heartening to find that public buildings often accessed for services by persons with disabilities were accessible. however, the general surroundings, such as road and sidewalk surfaces, require attention. these surfaces should be hard, and free of obstacles such as potholes. results illustrated how attitudes of participants, friends and society can facilitate participation. but no person should have to suffer the indignity of having to be carried up stairs. inaccessible public spaces are a major factor contributing to the exclusion of people with disabilities from mainstream society and denying them basic human rights (banda-chalwe, nitz & de jonge 2012). another very positive finding was that both support from and attitudes of immediate family were seen as facilitators by the majority of participants. this finding coincides with findings by rhoda (2012). however, attitudinal challenges were identified. this might be due to multiple stressors: families might be stressed by the daily struggles caused by a lack of assets. in addition, caregiving duties are physically and emotionally draining and can lead to negative emotional experiences amongst caregivers and what might be seen as negative attitudes. family carers need respite and time for themselves (hassan, visagie & mji 2011a; pierce et al. 2007). thus it is unfortunate that in many instances extended family was not in close enough proximity to provide assistance. organisations in the community and home-based carers can play a role in supporting family carers. this was shown by the positive comments on home-based carers and the stroke support group, and the number of participants who saw these services as a facilitator. however, many participants said they did not see how home-based carers could play a role in their circumstances. others said home-based carers did not visit them and saw this as a barrier. a shortage of home-based care services in the western cape province was also identified by maart & jelsma (2013) and hassan, visagie and mji (2011b). despite limited physiotherapy and occupational therapy – and even less speech therapy – and dietary and psychosocial counselling (cawood 2012), health care service providers and services were seen as a facilitator by many participants. this finding is similar to that of kahonde et al. (2010) and rhoda (2012) from studies done in the western cape, but in contrast to other western cape findings from maart and jelsma (2013) and namibian findings from van rooy et al. (2012). participants realised the constraints and challenges that health care service providers faced and thus, even though they complained about long waiting times and other challenges, they still felt the service was a facilitator. strategies such as fast tracking persons with disabilities and pre-packing medication might decrease waiting times. participants saw themselves as vulnerable and a soft target for criminals. this is unfortunately a realistic fear given the high levels of violence in the poorer areas of the western cape. the impact of unemployment on violence in these locations is illustrated by a participant in a study done by gibson (2013:4): ‘violence becomes an outlet. people are unemployed and they rob and hurt other people in order to make a living’. this fear, in conjunction with the transport problems, caused some participants to stay at home most of the time. maleka et al. (2012) have identified social isolation as a challenge that stroke survivors experience – the current study population might be at risk of social isolation. the challenges experienced by participants with social services and accessing disability grants are unfortunately not unique to this setting and have been described in other south african settings (saloojee et al. 2007; surender et al. 2007). it is especially worrying that participants feared retribution should they complain. study limitations no power analysis was done to determine a sample size. the sample was too small to allow statistical analysis of data between geographical subunits. recommendations top ↑ environmental barriers are best addressed by multisectoral action. in this instance, government departments (health, housing, transport, social services, law and order), local government, ngos, communities, and persons with disabilities need to collaborate to address the barriers experienced by study participants. for instance, improved transport for persons with disabilities would mean discussions between elected counsellors, community leaders, people with disabilities, ngos, taxi consortia, bus service operators, the south african rail commuter corporation and the provincial department of transport. similarly, multiple role players – provincial and local government as well as people with disabilities, their families, ngos, rehabilitation professionals and the police service – should liaise to make communities safe for people with disabilities to leave their homes without fear of being targeted by criminals and stray animals. different representatives from the same governmental and non-governmental organisations should focus on ensuring cement or tarred sidewalks with kerb cuts to facilitate community mobility. in addition, access audits can determine to what extent inaccessibility of public buildings is a barrier to participation. comprehensive assessment for and provision of assistive devices and adaptations to the home environment is part of rehabilitation service provision and must be done by service providers with funding from the department of health. ngos need to network closely with the department of health and health care providers to ensure they are regarded as part of a ‘seamless network’ of services available to stroke survivors. home-based care services should be extended. there is also a need for further study to explore home-based carers’ adherence to codes of ethical practice. the department of social services should ensure that social assistance grant applicants should be given an information sheet in their home language, assuring them of their rights and indicating the procedure to follow should they have complaints or queries. the perception of favouritism and retribution in the case of complaints must be explored through further study. where stroke survivors are issued with a temporary disability grant, social and health care service providers must ensure that they understand the process of re-application and that they know reapplication should be started well before the temporary grant expires. conclusion top ↑ environment barriers especially with regard to products and technology, and services, systems and policies – hindered participation of stroke survivors in the study setting. a lack of assets compounded barriers with regard to food, products for daily use, communication and transport. barriers to participation were exacerbated by a lack of services, systems and the implementation of policies focused on the inclusion of people with disabilities, as well as minimal access to assistive devices. acknowledgements top ↑ the authors want to thank dr gubela mji for reviewing the draft article and providing financial assistance for publication through the centre for rehabilitation studies at stellenbosch university. a further thank you goes to melanie stark for editing the paper and providing many useful insights. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.c. (stellenbosch university) conceptualised the research, conducted fieldwork and provided input into the article. s.v. 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maclachlan, m., 2012, ‘perceived barriers to accessing health services among people with disabilities in rural northern namibia’, disability & society 27(6), 761–775. http://dx.doi.org/10.1080/09687599.2012.686877 visagie, s., scheffler, e. & schneider, m., 2013, ‘policy implementation in wheelchair service delivery in a rural south african setting’, african journal of disability 2(1), art. #63, http://dx.doi.org/10.4102/ajod.v2i1.63 world health organisation (who), 2001, international classification of function, disability and health, world health organization, geneva. abstract introduction research methods and design results discussion conclusion recommendations acknowledgements references about the author(s) adri i. visser research unit: physical activity, sport and recreation (phasrec), faculty of health sciences, north-west university, potchefstroom, south africa mariette swanepoel research unit: physical activity, sport and recreation (phasrec), faculty of health sciences, north-west university, potchefstroom, south africa marike cockeran research unit: medicine usage in south africa (musa), faculty health sciences, north-west university, potchefstroom, south africa cindy kriel research unit: physical activity, sport and recreation (phasrec), faculty of health sciences, north-west university, potchefstroom, south africa citation visser, a.i., swanepoel, m., cockeran, m. & kriel, c., 2025, ‘relationships between leisure participation, leisure constraints, and quality of life among individuals with lower-limb amputations in south africa’, african journal of disability 14(0), a1585. https://doi.org/10.4102/ajod.v14i0.1585 original research relationships between leisure participation, leisure constraints, and quality of life among individuals with lower-limb amputations in south africa adri i. visser, mariette swanepoel, marike cockeran, cindy kriel received: 20 sept. 2024; accepted: 18 feb. 2025; published: 29 apr. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: individuals with lower-limb amputations (llas) face unique challenges that affect their leisure participation and overall quality of life (qol). objectives: this study examines the relationships between leisure participation, leisure constraints and qol among south africans with llas (n = 50, mean age 46.2 ± 11.63 years). method: a cross-sectional quantitative design was used, collecting data via the trinity amputation and prosthesis experience scale-revised (tapes-r), constraints to participation, the world health organization quality of life brief (whoqol-bref), and the world health organization quality of life disability module (whoqol-dis) questionnaires. results: weak to moderate relationships were found between leisure participation and constraints (interpersonal: τb = –0.01, p = 0.402; structural: τb = –0.21, p = 0.072). moderate positive associations emerged between leisure participation and qol in the disability module (τb = 0.21, p = 0.073), physical domain (τb = 0.20, p = 0.088) and environment domain (τb = 0.20, p = 0.091). medium-negative correlations were observed between qol and constraints in the physical domain (intrapersonal: r = –0.33, p = 0.021; interpersonal: r = –0.32, p = 0.021). significant negative relationships were found between qol (social domain) and both intrapersonal (r = –0.33, p = 0.020) and interpersonal constraints (r = –0.36, p = 0.010). conclusion: this is the first study to explore these relationships in south africans with llas. intrapersonal and interpersonal constraints significantly impact physical and social qol. addressing these barriers may improve overall qol in this population. contribution: this study provides novel insights into the interplay between leisure participation, constraints, and qol among south africans with llas. by identifying the significant impact of intrapersonal and interpersonal constraints on physical and social qol, these findings highlight the need for targeted interventions to reduce barriers and enhance leisure engagement. keywords: amputations; leisure participation; leisure constraints; quality of life; prosthetics; lower-limb amputations; tapes-r; whoqol-bref; whoqol-dis; south africa. introduction after sustaining a lower-limb amputation (lla), individuals often experience a cascade of life-altering changes in various areas of their lives, including on a physical, psychological and social level (calabrese et al. 2023; fortington et al. 2013; razak et al. 2016; zidarov, swaine & gauthier-gagnon 2009). various studies indicate a decline in leisure participation, an increase in leisure constraints and a decline in quality of life (qol) after an lla (bragaru et al. 2011; burger & marinček 1997; couture et al. 2010; ehde et al. 2000; gallagher et al. 2011; horgan & maclachlan 2004; lee et al. 2022; kars et al. 2009; nissen & newman 1992). leisure significantly contributes to the qol (diaz et al. 2019; iwasaki 2007). however, individuals living with llas often encounter constraints that restrict their participation in leisure activities (baker & palmer 2006; calabrese et al. 2023; dilworth 2010; lloyd & auld 2002). leisure refers to time free from life-sustaining responsibilities or work (henderson 2010; leitner & leitner 2012; mclean, hurd & rogers 2008). it offers individuals opportunities for self-expression, autonomy, choice, self-definition and relaxation, often lacking in their daily lives (coleman & iso-ahola 1993; russell 1996). engaging in leisure activities can yield numerous benefits, such as fostering positive emotions, acquiring knowledge and skills, building social relationships, promoting friendships, relieving stress and enhancing the quality of life (badia et al. 2013; calabrese et al. 2023; creek 2008; fancourt et al. 2021; henderson 2010; kampert & goreczny 2007; lloyd & auld 2002; melbøe & ytterhus 2017; russell & jamieson 2008; stumbo & peterson 2004; stumbo, wang & pegg 2011; whiting & hannam 2015). however, as previously noticed, individuals living with llas frequently encounter various constraints (intrapersonal, interpersonal and structural) that hinder their participation in leisure activities. leisure constraints are ‘factors that are assumed by researchers and perceived by individuals to inhibit or prohibit participation in leisure’ (jackson 2000:62). crawford, jackson and godbey (1991) categorise these constraints into three types: intrapersonal, interpersonal and structural. intrapersonal constraints pertain to psychological states, such as stress, anxiety, depression and socialisation challenges during or outside leisure activities (crawford et al. 1991; jackson 2000). interpersonal constraints involve relationships and interactions, particularly difficulty finding a suitable partner to engage in leisure activities (crawford et al. 1991; jackson 2000). structural constraints include available time, financial resources and the physical environment (crawford et al., 1991; jackson 2000). according to crawford et al. (1991), leisure constraints operate hierarchically and must be overcome sequentially: firstly, intrapersonal constraints; secondly, interpersonal constraints; and finally, structural constraints. individuals living with llas often experience reduced leisure participation, associated with a subsequent decline in or consistently low qol (burger & marinček 1997; calabrese et al. 2023; lloyd & auld 2002). according to the world health organization (who 2012), qol refers to an individual’s perception of their position in life, shaped by their values, culture, goals, expectations and concerns. qol encompasses various domains, including an individual’s environment, physical and psychological well-being, social relationships, personal beliefs and level of independence (who 2012). albrecht and devlieger (1999) assert that individuals with a moderate to high qol are better equipped to manage everyday life and its challenges, thereby contributing to their overall psychological, social and spiritual well-being. determining the qol for individuals living with llas can be challenging, particularly when the relationships between leisure participation, leisure constraints and qol are not well understood (wadey & day 2018). gallagher et al. (2011) recommend a thorough assessment of the leisure constraints faced by individuals living with llas. however, some studies report that individuals with severe disabilities, including llas, can still achieve a high qol (albrecht & devlieger 1999; asano et al. 2008). although numerous studies have explored the qol of individuals with llas in other countries, there is a significant lack of research in the south african context. the authors were unable to find existing literature, which has explored the relationships between leisure participation, leisure constraints and qol in individuals living with llas. addressing this gap will contribute valuable insights to the global and national scientific knowledge base. while the findings of this study are specific to south africa, they could serve as a basis for comparison in other contexts. this study aims to explore the relationships between leisure participation, leisure constraints and quality of life among individuals living with llas in south africa. research methods and design study design the research design employed in this study was a cross-sectional quantitative approach that utilised an online survey. both availability and snowball sampling techniques were utilised to collect data comprehensively and inclusively. setting mediators from both public and private sectors in south africa who had direct contact with individuals living with llas distributed email invitations to potential participants. study population and sampling strategy given the limited number of lla individuals in south africa, a minimum sample size of 42 participants was sought to ensure an acceptable reliability coefficient (r > 0.6) with a significance level of α = 0.05 and β = 0.20 (resnik & borgia 2011). a total of 50 individuals participated (68% male, 30% female, 2% preferred not to specify). a convenience sample of south african individuals aged 18 years or older (mean age = 46.2 years) with llas was invited to participate in this study. inclusion criteria required participants to have had an lla for at least 18 months, be able to read and understand english, and have access to email and the internet. the exclusion criteria were those who were pregnant during the study or had other disabilities or injuries apart from their lla. participants willing to participate in the study were asked to complete an online survey using google forms. the initial page of the survey included a study description and an informed consent document. participants gave their consent by clicking a checkbox, which granted them access to the survey questions. initially, 46 surveys were submitted. four additional participants completed the survey through snowball sampling, resulting in a total of 50 submissions, all of which were included in the analysis. data collection data were collected using an online google survey, including demographic information from the tapes-r, constraints to participation and whoqol-bref and whoqol-dis questionnaires. leisure constraints were determined using the ‘constraints to participation’ questionnaire designed for individuals with mental and physical disabilities. it was employed in this study to evaluate the participation in leisure activities and the constraints faced by individuals living with llas, as detailed in table 1a and table 1b. the reliability of the questionnaire was confirmed using cronbach’s alpha. the results were as follows: community (α = 0.92), time (α = 0.84), equipment (α = 0.87), economic (α = 0.90), intrapersonal (α = 0.81), transport (α = 0.80) and interpersonal (α = 0.84), as indicated by darcy, lock and taylor (2017). leisure participation was classified into three categories: low (no participation and once per month, once per month), moderate (once per week) and high (more than once per week or daily). the original questionnaire had seven constraint sections: community, time, equipment, economics, intrapersonal, transport and interpersonal. however, for this study, the questions were organised into three categories, as suggested by crawford et al. (1991): intrapersonal, interpersonal and structural constraints. responses were documented using a 6-point likert scale ranging from 1 – 6 (1 = never, 2 = a little, 3 = sometimes, 4 = often, 5 = most of the time, 6 = always). table 1a: demographic information and descriptive statistics of the tapes-r questionnaire, leisure participation, leisure constraints and quality of life (n = 50). table 1b: demographic information and descriptive statistics of the tapes-r questionnaire, leisure participation, leisure constraints and quality of life (n = 50). quality of life was determined using the whoqol-bref and whoqol-dis questionnaire, which comprises five domains: the disability module, psychological, physical, social and environmental. these domains were specifically developed to measure the qol of individuals with physical or intellectual disabilities. this study used the whoqol-bref and whoqol-dis questionnaire to assess qol among individuals with physical disabilities. the overall cronbach’s alpha for the whoqol-dis module was 0.852, with all corrected item-total correlation values exceeding 0.35 (ranging from 0.373 to 0.613) (power, green & whoqol-dis group 2010). the questionnaire includes 36 questions, three general questions and the remaining assessing the five domain scores. responses were collected using a 5-point likert scale, where 1 = not at all, 2 = a little, 3 = moderately, 4 = mostly and 5 = totally. the whoqol-bref and whoqol-dis questionnaire contains four negatively worded, reverse-scored questions. each domain score was scaled positively, meaning higher scores indicated a higher qol. domain scores were calculated by determining the mean score for each item and multiplying these mean scores by four to make them comparable with those used in the whoqol-100 (who 2012). the whoqol-bref and whoqol-dis questionnaire scores were reported on a 0–100 scale for each domain. data analysis data analyses were performed using spss version 27. descriptive statistics, including mean values, standard deviations, minimum and maximum values, frequencies and percentiles, were computed for the constraints to participation questionnaire and the whoqol-bref and whoqol-dis questionnaire. spearman’s rank correlation and kendall’s tau-b were employed to assess the relationships between variables. statistical significance was set at p < 0.05. ethical considerations ethical approval was obtained from the nwu health research ethics committee of the nwu (hrec) (reference: nwu-00034-16-a1). prior to completing the survey, mediators explained the study’s purpose and procedures, emphasising that participation was voluntary and participants could withdraw at any time without consequence. no physical risks were involved, and minimal emotional discomfort was anticipated, as the survey did not address sensitive topics. confidentiality was ensured, and participants were informed of the potential for online data security breaches. results the study sample comprised 50 participants with an average age of 46.22 years (±11.63), including 68% males, 30% females, and 2% who preferred not to disclose their gender. the average duration since amputation was 120.88 months (±120.18). the majority of participants had below-the-knee amputations (62%), followed by above-the-knee amputations (34%) and other types (through-knee) at 4%. the primary reasons for amputation were accident-related (52%), followed by other causes such as armed robbery, blood clots, pressure sores, congenital deformities, sports injuries, fibular hemimelia, infections and septicaemia (28%). diabetes accounted for 10% of cases, peripheral vascular disease for 6%, and cancer for 4%. in terms of leisure participation, 56% of participants engaged in activities at a high frequency (once per week or daily), 16% participated moderately (once per week), and 20% reported low participation (no participation or once per month or less). leisure constraints were assessed using the previously mentioned 6-point likert scale, with intrapersonal and interpersonal constraints showing minimal impact (mean values of 1.89 and 1.88, respectively), while structural constraints were slightly higher (mean value of 2.22). quality of life scores across various domains, as measured by the whoqol-bref and whoqol-dis questionnaire, indicated generally high levels of well-being. scores for the disability module averaged 79.46 (sd = 15.02), psychological domain scores averaged 77.40 (sd = 20.58), physical domain scores averaged 73.00 (sd = 20.15), social domain scores averaged 78.50 (sd = 18.68), and environment domain scores averaged 73.33 (sd = 19.58). these findings reflect a diverse range of experiences among individuals with llas, with varying levels of leisure participation and constraints and high qol scores across different domains. the analysis of the relationship between leisure participation and leisure constraints (table 2) revealed varying degrees of correlation across different constraint areas. a very weak, non-significant correlation was found between leisure participation and intrapersonal constraints (τb = −0.01, p = 0.992). similarly, the relationship between leisure participation and interpersonal constraints was weak and non-significant (τb = 0.01, p = 0.402). however, a moderate negative correlation was observed between leisure participation and structural constraints (τb = −0.21), approaching significance (p = 0.072). these findings suggest that structural constraints may moderate leisure participation, whereas intrapersonal and interpersonal constraints show negligible influence. table 2: relationships between leisure participation and leisure constraints. table 3 presents the relationships between leisure participation and qol. although the results were not statistically significant, moderate positive correlations were observed between leisure participation and the disability module (τb = 0.21; p = 0.073), physical domain (τb = 0.20; p = 0.088) and environment domain (τb = 0.20; p = 0.091) of the whoqol-bref and whoqol-dis questionnaire. these findings suggest a potential association between increased leisure participation and improved qol across various domains, although the relationships did not reach statistical significance. table 3: relationships between leisure participation and quality of life among individuals with lower-limb amputations. the analysis revealed several significant relationships between leisure constraints and qol (table 4) among individuals with llas. specifically, there were moderate negative correlations between intrapersonal constraints and both the physical (r = −0.33, p = 0.021) and social domains (r = −0.33, p = 0.020) of qol. interpersonal constraints also showed a moderate negative correlation with the physical (r = −0.32, p = 0.021) and social domains (r = −0.36, p = 0.010). however, no significant correlations were found between structural constraints and the qol domains, although a trend was observed with the physical domain (r = −0.26, p = 0.065). the other domains and the disability module did not correlate significantly with leisure constraints. these findings suggest that intrapersonal constraints and interpersonal constraints notably impact the physical and social aspects of qol for individuals with llas, highlighting the importance of addressing these barriers to improve overall well-being. table 4: relationships between leisure constraints and quality of life of individuals with lower-limb amputations. discussion this cohort exhibited high levels of leisure participation, generally low leisure constraints, and elevated qol scores across all domains (table 1a and b). most participants engaged in leisure activities regularly, reporting frequent participation. leisure constraints were consistently low across intrapersonal, interpersonal and structural categories, while qol scores were notably high in domains such as disability, psychological and social. these findings contrast with several studies that report a decline in leisure participation, increased leisure constraints and lower qol scores among individuals with llas (bragaru et al. 2011; calabrese et al. 2023; couture et al. 2010; ehde et al. 2000; gallagher et al. 2011; kars et al. 2009; nissen & newman 1992; westlund 2021; sinha, van den heuvel & arokiasamy 2011). matos, naves and de araujo (2020) suggested that the time since amputation and the type of amputation significantly influence an individual’s adjustment and overall qol. in this cohort, participants had lived with their amputations for an average of 10 years, with 62% having below-knee llas, which may have facilitated their adjustment and contributed to their high qol. jackson (1999) posits that individuals can adapt their behaviour to maintain leisure involvement by negotiating constraints through various strategies. this suggests that the participants in this study may have effectively ‘overcome’ their leisure constraints. understanding the relationship between leisure participation and leisure constraints is essential for examining the lived experiences of individuals with llas. this study identified two noteworthy negative correlations that provide insights into this dynamic (table 2). firstly there was a weak negative correlation between leisure participation and interpersonal constraints. this finding suggests that participants may have benefitted from robust social networks, including friends and family, who likely facilitated and encouraged their engagement in leisure activities. this aligns with previous research by bragaru et al. (2011) and olsen et al. (2022), which underscored the pivotal role of social support in promoting leisure participation among individuals with llas. secondly there was a moderate negative correlation between leisure participation and structural constraints. this highlights the potential influence of reduced physical or environmental barriers on enabling greater involvement in leisure pursuits. similar results were reported by day, wadey and strike (2019), who observed that individuals with llas were more likely to engage in activities such as walking, running, socialising and football on days when physical discomfort, including phantom limb pain, pressure sores or swelling, was minimal. while examining the relationships between leisure participation and qol domains (table 3), several moderate positive correlations, although not statistically significant, were identified between leisure participation and the following qol domains: the disability domain, the physical domain, and the environment domain. these correlations indicate that engagement in leisure activities may positively impact qol. this finding is consistent with lyu, oh and lee (2013), who observed that individuals often adapt their circumstances to engage in preferred leisure activities. it also aligns with jackson’s (1999) theory, which highlights how individuals negotiate and overcome barriers to achieve their leisure goals. moreover, the results support albrecht and devlieger’s (1999) assertion that individuals with long-lasting limitations can attain a high qol despite the challenges they face. the analysis of the relationship between leisure constraints and qol (table 4) provides valuable insights, highlighting moderate negative correlations between the physical domain and both intrapersonal constraints and interpersonal constraints. these findings align with previous results, which indicated high physical domain scores and low constraint levels within our cohort. one potential explanation for these moderate negative relationships is that physical activities and physical health were highly valued by participants, who often engaged in such activities with friends. dean, mcfadyen and rowe (2008) support this explanation, suggesting that participation in physical activities enhances physical health and fosters social connections. table 4 also reveals a significant moderate negative relationship between the social domain of the whoqol-bref and whoqol-dis questionnaire and intrapersonal constraints. this suggests that participants valued their engagement in community social leisure activities and did not experience significant anxiety or stress related to these activities. godbey (2003) observes that intrapersonal constraints might include a desire to participate in leisure activities despite feeling depressed; however, our cohort seemed free from such constraints, as evidenced by their active involvement in community activities. a significant moderate negative relationship was also observed between the social domain and interpersonal constraints. this indicates that our cohort’s low level of interpersonal constraints facilitated their social interactions, allowing them to integrate well with others and meet their social needs, supported by peers (bragaru et al. 2011; dean et al. 2008 & olsen et al. 2022). overall, the cohort reported low scores for all constraints, with structural constraints having a slightly higher mean value. these findings confirm that participants have effectively adapted to their lla and enjoy a high quality of life while encountering minimal leisure constraints. the results underscore the importance of reducing leisure constraints to enhance participation in activities for individuals with llas. conclusion our research represents the first study to explore the relationship between leisure participation, leisure constraints and qol among individuals living with llas in south africa. we identified a weak to moderate negative relationship between leisure participation and certain leisure constraints, specifically interpersonal and structural constraints. this suggests that higher leisure participation is associated with fewer interpersonal and structural constraints. when examining the link between leisure participation and qol, we found non-significant moderate positive correlations with the disability module, physical domain and environment domain of the whoqol-bref and whoqol-dis questionnaire. this indicates that greater leisure participation is associated with higher qol scores in these domains. in addition, significant moderate negative correlations were observed between leisure constraints (both intrapersonal and interpersonal) and qol, particularly in the physical and social domains. these results suggest that increased intrapersonal and interpersonal constraints are linked to decreased qol in these areas. recommendations to gain a deeper understanding of how lla affects participation in leisure activities, conducting interviews and focus groups with participants could be highly informative. interviews can reveal whether there was a decline in leisure participation following the amputation and explore whether individuals were more active in leisure activities before the procedure. this approach provides a comprehensive view of the impact of llas on leisure engagement and helps to identify the reasons behind changes in activity levels. while questionnaires offer valuable insights, interviews with individuals with physical disabilities can provide more nuanced feedback. this method allows for clarification of responses and exploration of detailed experiences. for instance, asking questions such as, ‘how did your engagement in leisure activities change before and after your lower limb amputation?’ can yield richer data than questionnaires, which may not capture all relevant information. the constraints to participation questionnaire highlighted that intrapersonal constraints were barriers to leisure activity engagement. participants mentioned involvement in other leisure activities, suggesting a need for further investigation into their activities. future research should focus on identifying these ‘other’ activities to understand better the leisure pursuits of individuals with llas and the nature of intrapersonal constraints affecting their participation. acknowledgements the authors gratefully acknowledge the financial support provided by north-west university through postgraduate bursaries. sincere thanks are extended to kyknet for their generous sponsorship which greatly contributed to the successful completion of this research. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.i.v., m.s., m.c. and c.k. contributed to the study’s research design and implementation, the results analysis and the manuscript’s writing. funding information the 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medicine and rehabilitation 90(4), 634–645. https://doi.org/10.1016/j.apmr.2008.11.003 abstract introduction research methods and design theoretical framework results discussion conclusion acknowledgements references about the author(s) michael a. kwarteng department of optometry, faculty of science and engineering, bindura university of science education, bindura, zimbabwe discipline of optometry, school of health science, university of kwazulu-natal, durban, south africa optometry unit, department of clinical surgical science, faculty of medical sciences, the university of the west indies, st. augustine campus, west indies, trinidad and tobago khathutshelo p. mashige discipline of optometry, school of health science, university of kwazulu-natal, durban, south africa samuel kyei department of optometry and vision science, school of allied health sciences, university of cape coast, cape coast, ghana pirindhavellie govender-poonsamy discipline of optometry, school of health science, university of kwazulu-natal, durban, south africa daniel s.q. dogbe department of special education, faculty of education, university of education, winneba, ghana citation kwarteng, m.a., mashige, k.p., kyei, s., govender-poonsamy, p. & dogbe, d.s.q., 2024, ‘compliance with spectacle wear among learners with hearing impairment in ghana’, african journal of disability 13(0), a1314. https://doi.org/10.4102/ajod.v13i0.1314 original research compliance with spectacle wear among learners with hearing impairment in ghana michael a. kwarteng, khathutshelo p. mashige, samuel kyei, pirindhavellie govender-poonsamy, daniel s.q. dogbe received: 19 aug. 2023; accepted: 21 apr. 2024; published: 13 june 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: hearing-impaired learners with refractive problems require correction because poor vision hinders their development and educational pursuits. objectives: to determine the level of compliance with spectacle wear in learners with hearing impairment in ghana. method: a descriptive cross-sectional study design was used to investigate the level of compliance with spectacle wear in hearing-impaired learners with uncorrected refractive errors (ure). the participants were from six schools for the hearing impaired, comprising three schools from each sector (northern and southern) of ghana. results: of the 1914 learners screened, 69 (3.61% ci: 2.82–4.54%) had ure. sixty-two (89.9%) learners with ure had myopia (-0.50 dioptre sphere (ds) to -2.00ds), and 7 (10.1%) had hyperopia (+2.00ds to +10.00ds). there were more females (53.6%) with ure than males, and their ages ranged from 8 to 35 years, with a mean of 17.35 ± 5.19 years. many (56.5%) learners complied with spectacle wear after 3 months of reassessment, with females being more compliant than males, but the difference was not significant (p = 0.544). learners who complied well with the spectacle wear were those with moderate visual impairment (vi), followed by mild vi, while those with no vi were the least compliant. a significant difference was observed between spectacle compliance and presenting vi (p = 0.023). conclusion: the spectacle wear compliance level was high compared to a previous study (33.7%) in ghana. contribution: this study highlights the importance of addressing ure among learners with hearing impairment in ghana and africa. keywords: spectacle compliance; hearing impairment; visual impairment; refractive error; ghana. introduction refractive errors have been identified as a significant source of visual impairment (world health organization 2022). learners with refractive problems require special attention because poor vision hinders their development and educational pursuits (woodhouse et al. 2013). uncorrected refractive error (ure) among learners has been associated with decreased self-esteem and poor reading abilities (pirindhavellie et al. 2023). refractive errors can be corrected with the use of contact lenses, spectacles and refractive surgeries (kwarteng, katsvanga & kyei 2022a; naidoo et al. 2016). although spectacles are a relatively cost-effective intervention, middleand low-income countries still battle to provide this service because of access and cost implications (ilechie et al. 2019). refractive error corrections can significantly improve children’s wellbeing, quality of life and academic performance (kwarteng et al. 2024; pirindhavellie et al. 2023). however, eye care corrective devices such as spectacles are not always utilised even if they are available, provided and accessible (ezinne et al. 2020; ilechie et al. 2019). poor compliance with spectacle wear has been reported among school children (ilechie et al. 2019). some of the reasons cited for non-compliance with spectacle wear among learners included the spectacles not being a good fit, disapproval from others, spectacles being prescribed for low magnitude refractive errors, disapproval of spectacles by parents, inconvenience with certain activities and constantly forgetting the spectacles at home (du et al. 2023; ezinne et al. 2020; ilechie et al. 2019). having these factors addressed will lead to improved compliance with spectacles. learners with hearing impairment rely primarily on visual cues for communication and learning (kwarteng et al. 2022c; pehere et al. 2019). a high prevalence of vi has been reported among learners with hearing impairment in sub-saharan africa, with ure being the leading cause (kwarteng et al. 2022c). to achieve the goal of reducing the burden of vi because of ure, there is a need for comprehensive eye screening, the provision of spectacles and assessing spectacle utilisation among these learners. therefore, it is important to prioritise the eye health of learners with hearing impairment and provide them with the necessary interventions to improve their visual abilities and learning outcomes. while various methods for offering free or inexpensive spectacles are being conducted, efforts to offer these services will be ineffective if there is poor compliance with spectacle wear (pavithra, hamsa & madhukumar 2014). in ghana, only one study has investigated the provision of spectacles and determined the compliance level with spectacle wear among pupils in mainstream schools (ilechie et al. 2019). no information could be found on the compliance with spectacle wear among learners with disabilities such as hearing impairment in ghana and beyond. with the high prevalence of vi among learners with hearing impairment in ghana (kwarteng et al. 2022b, 2022c), it was imperative to consider their visual needs and provide them with solutions. this study aimed to determine the level of compliance with spectacle wear among learners with hearing impairment who were provided with spectacles for the correction of refractive errors in ghana schools for the hearing impaired. research methods and design a descriptive cross-sectional study design was used to investigate the level of spectacle compliance among learners with hearing impairment. this study was conducted in six schools for learners with hearing impairment, three schools from the southern part of ghana and the other three from the northern part of the country. ghana is located in the west of africa with an estimated population of about 31 million with 16 administrative regions and two sectors (northern and southern) (ghana statistical service 2021). there are 11 public schools for learners with hearing impairment in ghana with an estimated student population of 3000 (oppong & fobi 2019). a stratified random sampling method was employed to randomly select six schools from the total of 11 public schools for the hearing impaired nationwide. the schools were classified into two sectors based on the national geographic classification: the northern sector, consisting of four schools, and the southern sector, consisting of seven schools. three schools were chosen at random from a pool of four in the northern sector. the chosen schools were gbeogo, ashanti and savelugu schools for the hearing impaired. in the southern sector, schools were classified as one if their distance was less than 80 km. by applying this criterion, four schools were consolidated into a single entity, resulting in the southern schools being reduced to four. out of the four available sites, three schools were selected at random to serve as the locations for this study. the chosen schools are cape coast, sekondi and state schools for the hearing impaired. the study utilised a convenient purposive sampling to choose the participants, as it required the inclusion of all learners who were present during the study period and were prescribed spectacles. the study used ready-made (pop-in) spectacles for learners with myopia and custom-made spectacles for learners with hyperopia. theoretical framework the theoretical framework utilised in this study was adopted from pavithra et al. (2014) study conducted among learners in stream schools. two major themes were used in this study, with the first focusing on learners who willingly complied with wearing spectacles, while the second explored those who did not comply with wearing them. these themes allowed for a comprehensive examination of the factors influencing compliance and non-compliance behaviours about spectacle usage. three subthemes emerged from those not complying, including not wearing them but bringing them to school, leaving the spectacles at home and misplacing them (figure 1). figure 1: theoretical framework for spectacle compliance. data collection data were collected with a well-designed data collection tool with different sections modified from a validated data collection tool and a last section as a questionnaire on spectacle compliance (pavithra et al. 2014). the first section covered demographic data such as age and sex, among others while the second section measured visual acuity and examined anterior and posterior segments of the eye as described in a preceding study (kwarteng et al. 2022b). an objective assessment of refractive status was carried out with the use of the dry retinoscopy technique (pavithra et al. 2014), after which participants were provided spectacles with different colours and shapes to choose from. refractive status was determined using spherical equivalents and defined as myopia ≥ –0.50 ds and hyperopia ≥ +2.00 ds (kwarteng et al. 2022a; tagoh et al. 2020). compliance with spectacle wear was determined with the assistance of teachers using a structured questionnaire with the learners from may 2022 to december 2022, while the entire study’s data collection period was from march 2022 to december 2022. before distributing the spectacles, learners and their teachers were educated on the advantages and disadvantages of spectacle wear, such as improvement in visual functions, protection of the eyes from dirt and harmful radiations and initial wear discomfort, among others (pavithra et al. 2014). unscheduled visits were made to the schools 3 months after the distribution of full-time spectacles to observe compliance with spectacle wear. on the day of the assessment, learners not wearing the spectacles were questioned on the whereabouts of the spectacles and the reasons for not wearing them. the interviews were conducted on a class-to-class basis, starting with classes that were closer to the school entrance. compliance was defined as the learner wearing the spectacles on the assessment day and confirmation from class teachers that the learner had been wearing the spectacles during school hours (brien holden vision institute 2019; gajiwala et al. 2021; ilechie et al. 2019). uncorrected visual acuity (ucva) was defined using the world health organization’s definition for visual impairment, with moderate vi (less than 6/18–6/60), mild vi (less than 6/12–6/18) and no vi (6/6–6/12) (world health organization 2022). ethical considerations ethical approval was obtained from the biomedical research ethics committee (brec) of the university of kwazulu-natal (reference number: brec/00003247/2021) and the ghana health service ethical review committee (reference number: ghs-erc: 006/04/21). the study adhered to the declaration of helsinki’s guidelines involving the use of human subjects. informed consent was obtained after each learner and their parents or guardians were informed about the study’s purpose. there were no risks and/or discomforts associated with taking part in the study, and the students received no financial compensation. the study was voluntary, and participants were informed that they could discontinue at any time without incurring any fees or losing access to treatment or other benefits to which they would ordinarily be entitled. data analysis and management data from the study were analysed using the spss version 21 (spss inc, chicago, usa). kernel density plots were constructed to evaluate the normality of the data. means, standard deviations, prevalence and 95% confidence intervals were determined. a chi-square test was conducted to assess the relationship between categorical variables (p < 0.05). the data will be shredded 5 years after the completion of the study. the data will be exclusively accessible to the researchers because of its encryption in a password-protected computer. results a total of 1914 learners were screened during the study period, with 69 (3.61% ci: 2.82–4.54%) having uncorrected refractive error, making the 69 learners the sole participants in this study. the majority (89.9%) of the learners were classified as having myopia (–0.50ds to –2.00ds) and the rest hyperopia (+2.00ds to +10.00ds), with females (53.6%) being the predominant group. there was no statistically significant difference between the proportions of males and females (χ2 = 0.71, df = 1, p = 0.399). learners’ ages ranged from 8 to 35 years, with a mean of 17.35 ± 5.19 years. learners from the southern sector of ghana formed the majority (62.3%), and there was a statistically significant difference between the proportions of learners from the two regions (χ2 = 8.29, df = 1, p = 0.004). however, there was no statistically significant difference in the proportions of sex between the two regions (table 1). a chi-square test revealed no statistically significant association between variables (region, school and vi before correction) and sex (p > 0.05). table 1: distribution of demographics according to sex. distribution of compliance with spectacles according to sex most (56.5%) of the learners complied with wearing spectacles, and among them, females complied more than males; however, the difference was not statistically significant (χ2 = 2.495, df = 1, p = 0.114). more males than females reported misplacing their spectacles. overall, there was no significant difference between spectacle compliance and sex (χ2 = 2.14, df = 3, p = 0.544) as shown in table 2. table 2: distribution of compliance with spectacles according to sex. distribution of compliance with spectacles according to presenting visual impairment spectacle compliance was highest among participants with moderate vi (19, 76%), followed by those with mild vi (11, 50%) and the least among those with no vi (9, 40.9%). analysis revealed a statistically significant difference between spectacle compliance and presenting vi (χ2 = 14.63, df = 6, p = 0.023) as shown in table 3. table 3: distribution of compliance with spectacles according to presenting visual impairment. each subscript letter denotes a subset of vi before correction categories whose column proportions do not differ significantly from each other at the 0.05 level. a, did not differ significantly among visual impairment groups; b, did not differ significantly among visual impairment groups. distribution of compliance with spectacles according to age group there was no statistically significant association between spectacle compliance and age group (χ2 = 1.77, df = 3, p = 0.621); despite the 18–35 years olds having slightly better compliance levels than the 0–17 years olds, as shown in table 4. table 4: distribution of compliance with spectacles according to age group. discussion in this study, compliance with spectacle wear among learners with hearing impairment was assessed 3 months after the provision of spectacles. this study found high compliance with spectacle wear among the participants, with the majority having moderate vi before dispensing spectacles. the findings suggest that learners with visual impairments in schools for the deaf have a higher need for visual aids because they rely on optimal vision to function. visual impairments may affect their academic performance, and providing them with spectacles significantly improves their vision, which can lead to better academic outcomes and quality of life (kwarteng et al. 2024; wu, feng & zhang 2023). schools need to prioritise vision screening and the provision of spectacles for learners with hearing impairment not only to improve vision but also to enhance their educational and learning opportunities. while the primary aim is to address vision issues, the improved vision can positively impact their access to educational materials, ensuring parity with their peers without visual impairment. this is vital as learners with hearing impairment heavily rely on visual cues for daily activities, and better vision can significantly benefit their learning experiences (kwarteng et al. 2022c; pehere et al. 2019). the level of compliance (56.5%) with spectacle wear in this study was higher compared with the overall compliance (40.14%) in a review study of learners in mainstream schools (dhirar et al. 2020). this indicates that learners in the current study may have a higher level of motivation or perceived benefit from wearing spectacles compared to learners in mainstream schools because of their reliance on good visual cues for better communication (pehere et al. 2019). in ghana, a similar study among learners in a mainstream school found that 33.7% of learners wore their spectacles during the time of assessment (6 months) (ilechie et al. 2019). it is possible that the relatively shorter reassessment time for compliance in the current study (3 months) could be the reason for the higher compliance compared to the ghanaian study. furthermore, the participants in the ghanaian study used a prescription determined by self-refraction, whereas the learners in the current study received ready-made or custom-made spectacles determined by the optometrist. it is possible that the prescription determined by self-refraction could have been less accurate than the spectacles prescribed by the optometrist, thereby resulting in better compliance in the current study. higher compliance rates of 71.6% and 73.7% have been reported in studies with reassessment times of 1 year and 10 months, respectively (khandekar, gogri & al harby 2002; yabumoto et al. 2009). the compliance rates reported in previous studies with longer reassessment times suggest that factors other than reassessment time play a vital role in compliance with spectacle wear. these factors include the education provided to the learners and their teachers before the provision of spectacles. therefore, it is important to consider the type of spectacles used and the education provided when assessing compliance rates. it is worth noting that adherence to spectacle use varies across different african countries, with some recording higher compliance rates than others. studies conducted among mainstream school learners in botswana, nigeria and malawi reported spectacle compliance of 60.1%, 59% and 69%, respectively, which is higher than what is recorded in this current study (brien holden vision institute 2019; mccormick et al. 2019). the major reasons reported for the high compliance were the short (3 months) duration for reassessment, the urban location of study centres and varying frame designs (brien holden vision institute 2019; mccormick et al. 2019). in other developing countries such as oman (khandekar et al. 2002), a high (71.6%) spectacle compliance rate has been reported. in contrast, other studies in africa have reported lower (< 40%) spectacle compliance levels (congdon et al. 2008; wedner et al. 2008). this variation in spectacle compliance rates could be attributed to factors such as access to eye care services, cultural beliefs and socioeconomic status (morjaria, mccormick & gilbert 2019). presenting vi of learners influenced the varying compliance levels across studies (morjaria et al. 2019; pavithra et al. 2014), where learners with poorer uncorrected vision displayed better spectacle compliance. therefore, it is crucial to consider the presenting vi when comparing with similar studies, as it can affect compliance rates and ultimately impact the study’s findings. furthermore, the types of spectacles, such as ready made and custom made, used in the studies may have contributed to the variations in compliance levels. although both types of spectacles have proven to provide good visual outcomes (asare & morjaria 2022; morjaria et al. 2017; pearce 2014), their compliance levels have also been generally low among school learners (pearce 2014). comparison between the compliance level among the two types of spectacles could not be ascertained by this study because of the significant difference in the number of dispensed custom-made spectacles compared to pop-in spectacles. there were more females than males at the time of the distribution of ure. also, females had a high level of compliance compared to their counterparts although the differences were not statistically significant. males, on the other hand, had a higher rate of misplacing spectacles than females; this finding was also not statistically significant. these findings suggest that sex differences do not play a role in the use and care of spectacles, and interventions should not be targeted at a particular sex. the study highlights the importance of educating both males and females on the proper use and care of spectacles, as well as the need for interventions that are not gender specific. this finding is similar to a study by ilechie et al. (2019), which reported no statistically significant difference between the sexes on compliance with spectacle wear among learners in mainstream schools in ghana. several studies (barria von-bischhoffshausen et al. 2014; holguin et al. 2006; khandekar et al. 2013; manny et al. 2012; morjaria et al. 2019; pavithra et al. 2014; wedner et al. 2008; yabumoto et al. 2009) have also reported similar findings among learners in mainstream schools across the globe. in contrast, several studies among mainstream schoolchildren have shown that there is a statistically significant difference between compliance levels among females and males, with females being more compliant with spectacles wear (aldebasi 2013; congdon et al. 2008; gogate et al. 2013; mccormick et al. 2019; morjaria et al. 2019). the variation in findings between studies could be because of cultural and societal factors that influence attitudes towards wearing spectacles among male and female learners in different settings (morjaria et al. 2019). the difference in compliance levels between males and females may also be influenced by the design and fit of the spectacles, as well as the type of visual impairment being corrected. the relationship between compliance with spectacle wear and sex is still underexplored in africa and may vary depending on the population studied. it is clear, though not statistically significant, that females are more compliant than males. it would be interesting in a follow-up study to explore the factors that influence this observation. there was no statistically significant difference in compliance with spectacle wear among young learners and old learners. this suggests that both age groups are capable of complying with spectacle wear even though there may be other factors that influence their behaviour. this finding is supported by morjaria et al. (2019) who reported no consistency in compliance with spectacle wear among age groups in similar studies. varying results have been reported with some studies (khandekar et al. 2002; manny et al. 2012) finding high spectacle compliance among older learners while other studies (barria von-bischhoffshausen et al. 2014; holguin et al. 2006; pavithra et al. 2014) have found better compliance among younger learners. these inconsistencies in exploring the link between various demographic variables and compliance highlight the need for further research into these factors to improve spectacle compliance among school learners in africa. the influence of other factors such as the type of spectacle, duration of reassessment and ucva, among others also warrant further investigation. understanding these factors can help educators and health practitioners develop effective strategies and design interventions to improve compliance rates, ensuring that learners receive the vision correction they need to succeed academically and personally. limitations the compliance assessment period was shorter compared to other studies. the ghana education service’s use of the 2022 academic calendar had an impact on this study’s timetable because the data collection was carried out during the covid-19 pandemic and promotional term. however, because of the prospective nature of the study, follow-up on the learners’ compliance with spectacle wear among those who had not completed school is possible. despite the short compliance assessment period, the study results provide valuable insights into compliance with spectacle wear among learners with hearing impairment. however, the impact of external factors, such as the academic calendar, should be considered in future studies to ensure a more comprehensive comparison to similar studies. conclusion compliance with spectacle wear was high among learners with hearing impairment in this study compared to a previous study in ghana and other parts of the continent. the level of compliance shown by learners was found to be influenced by presenting vi; however, neither sex nor age group had a significant influence on spectacle wear compliance. the long-term effects of improved compliance with spectacle wear on academic performance and overall quality of life remain for future investigations. acknowledgements this article is partially based on m.a.k’s dissertation entitled ‘visual function among learners in schools for the deaf in ghana: an observational and interventional study’ towards the degree of doctor of philosophy in health science (optometry) at the university of kwazulu-natal, 24 april 2024 with supervisor prof. k.p. mashige and co-supervisors prof. s. kyei, mrs p. govender-poonsamy and dr d.s.q. dogbe. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors, m.a.k., k.p.m., s.k., p.g-p. and d.s.q.d., contributed to the conceptualisation and design of the study. m.a.k. contributed to the material preparation, data collection and analysis, and wrote the first draft of the manuscript. all authors, m.a.k., k.p.m., s.k., p.g-p. and d.s.q.d., commented on earlier versions of the manuscript, and read and approved the final manuscript. funding information this study was funded by the african researchers’ initiative (ari) research grant; deafblind international (dbi), switzerland; visionspring inc., africa and college of health science phd scholarship, university of kwazulu-natal, south africa. data availability the data that support the findings of this study are available on reasonable request from the corresponding author, m.a.k. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that 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basilio, f.m.a., robl, r., rodrigues, d.b. et al., 2009, ‘factors associated with spectacles-use compliance in a visual screening program for children from southern brazil’, investigative ophthalmology & visual science 50(13), 2439. abstract introduction clinical assessment for early detection materials and methods critique of the algorithm findings discussion conclusion acknowledgements references about the author(s) pragashnie govender discipline of occupational therapy, school of health sciences, university of kwazulu-natal, south africa robin w.e. joubert discipline of occupational therapy, school of health sciences, university of kwazulu-natal, south africa citation govender p, joubert, rw, 2016, ‘“toning” up hypotonia assessment: a proposal and critique’, african journal of disability 5(1), a231. http://dx.doi.org/10.4102/ajod.v5i1.231 research project no: (hss/0274/013d original research ‘toning’ up hypotonia assessment: a proposal and critique pragashnie govender, robin w.e. joubert received: 13 oct. 2015; accepted: 29 feb. 2016; published: 26 may 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: clinical assessment of hypotonia is challenging due to the subjective nature of the initial clinical evaluation. this poses dilemmas for practitioners in gaining accuracy, given that the presentation of hypotonia can be either a non-threatening or malevolent sign. the research question posed was how clinical assessment can be improved, given the current contentions expressed in the scientific literature. objectives: this paper describes the development and critique of a clinical algorithm to aid the assessment of hypotonia. methods: an initial exploratory sequential phase, consisting of a systematic review, a survey amongst clinicians and a delphi process, assisted in the development of the algorithm, which is presented within the framework of the international classification of functioning, disability and health. the ensuing critique followed a qualitative emergent–systematic focus group design with a purposive sample of 59 clinicians. data were analysed using semantical content analysis and are presented thematically with analytical considerations. results: this study culminated in the development of an evidence-based clinical algorithm for practice. the qualitative critique of the algorithm considered aspects such as inadequacies, misconceptions and omissions; strengths; clinical use; resource implications; and recommendations. conclusions: the first prototype and critique of a clinical algorithm to assist the clinical assessment of hypotonia in children has been described. barriers highlighted include aspects related to knowledge gaps of clinicians, issues around user-friendliness and formatting concerns. strengths identified by the critique included aspects related to the evidence-based nature of the criteria within the algorithm, the suitability of the algorithm in being merged or extending current practice, the potential of the algorithm in aiding more accurate decision-making, the suitability of the algorithm across age groups and the logical flow. these findings provide a starting point towards ascertaining the clinical utility of the algorithm as an essential step towards evidence-based praxis. introduction accurate assessment for early detection and appropriate intervention remains a priority for all clinicians involved in the field of paediatrics. over the last decade the clinical assessment of hypotonia has been problematic, primarily due to the subjective nature of clinical evaluation. this has posed dilemmas for practitioners in reaching consensus on the veracity of the clinical assessment, given that the presentation of hypotonia in paediatric neurological morbidities can be either a benign or malignant sign (bodensteiner 2008; leyenaar, camfield & camfield 2005). this study was thus undertaken in a move towards advocating for more accurate and informed decision-making during clinical assessment of children with hypotonia. the term hypotonia is used to describe low or decreased muscle tone. hypotonia is a symptom of a number of neurodevelopmental, neurological and genetic disorders. clinical evaluation of hypotonia is one of the aspects of the diagnostic and therapeutic process that remains subjectively assessed and thus creates an accuracy predicament for practitioners (martin et al. 2005, 2007). there are currently no standardised assessment tools for children (after infancy and during early childhood) with low muscle tone (soucy et al. 2015). moreover, the incidence of hypotonia is difficult to ascertain given the fact that it is a symptom of a number of conditions or disorders (lisi & cohn 2011). clinical assessment for early detection assessing disorders of muscle tone is essential in the clinical characterisation of children with numerous neurological disorders (soucy et al. 2015). there are however a number of underlying causes of hypotonia for which there are no definitive laboratory or imaging tests, such as idiopathic hypotonia, so the role of clinical and developmental assessments remains important (harris 2008). to date, there have not been any studies that have investigated non-invasive, objective clinical measures and the presence of a clinical diagnosis of hypotonia (soucy et al. 2015). the authors became increasingly concerned about the variability of decisions made in the assessment of hypotonia, the nature of the process and outcomes, the inaccuracy of which often contribute to delayed diagnosis and delayed interventions (maulik & darmstad 2007) as seen in the south african context. the world health organization (who & unicef 2012) advocates for a comprehensive approach towards appropriate paediatric care and support, including early identification; assessment and early intervention planning; provision of services; and monitoring and evaluation. in this study, the authors respond to the call from the who in ensuring early identification and intervention. in an attempt to guide the assessment practices of clinicians that are responsible for the evaluation of low muscle tone in children, the development of a guided decision-making process was considered in the form of a clinical algorithm. a clinical algorithm is a text format that is especially suited for representing a sequence of clinical decisions for guiding patient care (margolis 1983); it is said to be ‘a widespread instrument for increasing efficacy and managing quality in medicine by the implementation of specified standards into a systematic, logical, evidence-based, and rational concept’ (khalil et al. 2011). there is evidence that the use of algorithms can assist in standardising care and in assisting effective diagnostic interventions (miller, delgado & iannaccone 1993). the aim of this paper is to introduce the first prototype of the clinical algorithm and to present an initial critique that represents the voices of clinicians for whom this instrument has been developed. materials and methods the study methods are presented in two parts, namely, the development of the clinical algorithm and the critique of the algorithm for practice. development of the algorithm choosing the best option a process was initiated to determine whether a step-by-step scheme, decision tree or algorithm was most suitable for development, based on the question that was to be answered by this study. these concepts are often used synonymously, although they are said to represent different types of formal instructions for handling a particular subject (khalil et al. 2011). step-by-step schemes, decision trees and algorithms are described by characteristics according to problem orientation, priority orientation, branching, loops, linear structure and in having several end points (khalil et al. 2011:32). an algorithm is said to fulfil all of these characteristics and was hence the primary choice. application of recommendations by these authors (khalil et al. 2011) was considered in the planning and development of the clinical algorithm. preliminary data and process of development as this study was part of an ongoing larger project, the data from initial stages (naidoo 2013a, 2013b; naidoo & joubert 2013) assisted in framing the stance that was to be taken in the development of the algorithm. the details of these phases are described in the respective papers. the principal author drew on findings from the literature review, by identifying a candidate set of tests and methods that were used by clinicians. these were then proposed to a national cohort of clinicians (occupational therapists, physiotherapists and paediatricians), who indicated those tests and methods that are currently used in practice. these items were then exposed to a delphi process, which aided in the reduction of items based on a consensus process. twenty-four clinical characteristics, organised into 11 clusters, were determined as relevant for inclusion. for each characteristic, one test (as a first-line assessment method) had been identified. using a desktop approach, the principal author used logical speculation from this data set with a level of abductive reasoning (an inference to the best explanation from logical deduction) to formulate and format the clinical algorithm in line with the technical regulations proposed by the international organization for standardization (iso) norm (khalil et al. 2011). the international classification of functioning, disability and health (icf) multipurpose classification was also considered in the quest towards use of universal terminology. a process of reflection-on-action (schön 1983) was also used in this developmental process, which included reflection on prior data collection processes, theoretical perspectives gained and consideration of knowledge gained. these combined culminated in the first prototype of the clinical algorithm, which is presented on one page with a logical flow, left to right, with adherence to the symbols and norms as required for clinical algorithms with aspects that were evidence-based from preceding phases. critique of the algorithm design this aspect of the study followed a qualitative, emergent–systematic focus group design (onwuegbuzie et al. 2009) in which focus groups were used for both exploratory and verification purposes. kinsella (2010:567) noted that different disciplinary communities often work in silos, dealing with similar problems but not readily sharing knowledge around discipline lines, and asserted the place of reflection in the use and generation of knowledge for practice. the principal author thus considered the use of processes of reflection-in-action and reflection-on-action (schön 1983) during this phase of the study (figure 1), together with multiple iterations of focus group discussions. figure 1: processes of reflection-in-action and reflection-on-action in this study. sample and recruitment participation was invited via email correspondence in which the purpose of the study was explained. practitioners working at district, regional and tertiary-level hospitals, private practice and schools were approached for participation. purposive homogenous sampling was used to recruit participants. the final sample comprised 59 paediatric clinicians (i.e. paediatric occupational therapists, paediatric physiotherapists, paediatricians and paediatric neurologists). paediatric clinicians were those practitioners who had experience with and were currently working with children with neurological disorders on a weekly basis. additional selection criteria included a current registration with the health professions council of south africa and greater than 2 years of experience. participants were recruited at different geographical locations over a year via the following methods: a workshop session at a national conference, special interest groups, multidisciplinary team meetings, district-level meetings and institutional fora. data gathering occurred over a period of 12 months at sites convenient to the group of clinicians. these included forum meetings, a national conference and at hospital departments. composition of the groups was by geographic working teams. each group, by default, contained a mix of both newly trained clinicians as well as more experienced clinicians. data collection strategy ten focus group discussions were held, varying between five and eight participants in each group and lasting 90–120 minutes. for the larger groups, a facilitator was included to aid the process. each individual within the group were presented with an a3 printout of the algorithm, with a 10-minute didactic input on the development of the algorithm. this was followed by a set of 10 open-ended questions related to the scope and purpose, applicability and clarity of presentation. the multiple focus group discussions allowed for the assessment of data redundancy in general and across-group redundancy and/or saturation in particular (onwuegbuzie et al. 2009). sampling ceased when across-group redundancy was achieved. data analysis the focus group discussions were digitally recorded. tape-based analysis of audio-recordings (onwuegbuzie et al. 2009) was done with semantical content analysis (stewart & shamdasani 2015:126). the principal author’s reflections-on-actions were also recorded as analytical memos during the data analysis process, which occurred within a maximum of 1 day following the data collection, and summarised. within semantical content analysis, the frequency of specific concepts (indicated in table 1) that were mentioned (designation analysis) as well as phrases or descriptors that were used in the critique (attribution analysis) were noted. additionally, some of the more specific analytical aspects, namely constant comparisons between groups, use of the group dynamics as a resource and use of participants as co-analysts (barbour 2007; kamberelis & dimitriadis 2011), were considered. these items are outlined in table 1. table 1: analytical aspects considered in data analysis. ethical considerations ethical principles of autonomy, veracity, beneficence and scientific honesty were observed throughout this study. autonomy was ensured by soliciting participants’ consent to participate in the study and by assurance of and respect for their right to withdraw from the study at any time without prejudice. beneficence was ensured by the researcher–participant relationship, privacy and confidentiality were maintained where possible, and ethical clearance was granted by the human and social science ethics committee of the university of kwazulu-natal. ethical considerations with respect to data storage and management were also ensured by password-protected devices and access control filing systems. veracity was maintained by authenticity in the presentation of findings and by upholding the principle of scientific honesty and integrity. the participatory nature of the focus group sessions was explained and participants were advised at the outset about ‘shared expectations and the nature of participation’ so that there were no misconceptions or misunderstandings about ownership. these points were affirmed in signed declaration forms. trustworthiness in order to ensure trustworthiness of the study, lincoln and guba’s (1985) evaluative criteria of credibility, dependability and confirmability were noted and strategies implemented. triangulation of sources (literature and practitioners) and data (focus group data from multiple groups), together with theory (literature, icf) triangulation, was ensured in this study. respondent validation or member checking occurred concurrently within the focus group sessions to reduce misinterpretations and researcher bias. this was done in the form of paraphrasing as well as momentary summaries and invitation for comment. reflexivity was observed throughout the planning and execution of this study. personal and intellectual biases were highlighted in a statement of positionality. there was the conscious experiencing of the self as both inquirer and respondent, as researcher and learner (denzin & lincoln 2011:124). the principal author’s contribution to the research study can be seen as useful and positive rather than detrimental and her position as a paediatric therapist and biases were highlighted prior to the discussion sessions. measures that were put in place to maintain a level of objectivity included initial bracketing to facilitate the discussion – an opening statement on occupying a hybrid position in the research (jootun, mcghee & marland 2009) as researcher and practitioner. findings presentation of findings this study resulted in the development of a clinical algorithm for paediatric clinicians in the assessment of hypotonia in children. this initial prototype is presented in figure 2. figure 2: a clinical algorithm for hypotonia assessment. the second aspect of this study considered a critique of this algorithm with a purposive sample of 59 participants. demographic data are presented in table 2. the majority of participants (67%) were within the 30–49 year age range, with a high percentage of participants holding a qualification higher than that of a bachelor’s degree (n = 47%). the majority of the participants (n = 53%) were employed in a public hospital setting. the experience of participants ranged from newly qualified clinicians with less than 5 years of experience (17%) to greater than 20 years of experience (19%). table 2: sample demographics (n = 59). a description of the semantical content analysis (stewart & shamdasani 2015), that is, specific concepts that were mentioned in the focus groups (designation analysis), as well as phrases or descriptors that were used in this process of critique (attribution analysis), are presented in table 3. table 3: concepts and phrases from focus group analysis. algorithm prototype with critique the flow of the algorithm is sequentially presented as a narrative, interspersed with critical feedback from the focus group discussions. the visual representation of the algorithm appears in figure 2. the process begins on the far left at the symbol indicating start. the ‘message to network’ symbol indicates suspected hypotonia, as the diagnosis under decision. the first step in this process involves the collection of initial data and gaining a history. a one-way ‘process symbol’ indicates the mono-directional action of obtaining a history via an interview. a checklist, provided on the left, indicates those aspects that are deemed imperative as part of the history taking. these inclusions have been transposed from the delphi process in the preliminary stage (naidoo & joubert 2013), in which panellists concurred with a high level of agreement that these aspects should be included. this is followed by another mono-directional action in which the clinical assessment is initiated. the hierarchy of inclusion of the clinical characteristic clusters that follow were based on the ranking orders gauged from the consensus process (naidoo & joubert 2013). one change was made to this hierarchy, in that hypotonic facies and excessive drooling were combined as the first characteristic under consideration and placed at the top of the hierarchy, given that these signs would be overt and noticeable to the clinician on first presentation at the clinical assessment. the characteristics that follow have been ranked in the order of most importance within the top five, top three and top two rankings from the consensus process. within each of the presented characteristics, the preferred test and method, which would now indicate the first line of assessment, are included in parenthesis. posture and antigravity tests were ranked the highest and hence are presented higher up. a checklist for posture has been included on the left, as many characteristics fell within this cluster for consideration. the last characteristic listed is reflexes. from the critique, clinicians appeared to appreciate the value of the red flags and the inclusion of evidence-based criteria and first line tests for use. there was also the suggestion of the algorithm assisting in decision-making and inclusion of criteria as a way of ‘covering all bases’ in assessment as well as a sense that these aspects of assessment could be merged and extend current assessment practices. the algorithm proceeds with clinical characteristics, which are represented within decision symbols in which a binary decision (yes or no) has to be made. each of the no responses lead to the next characteristic for consideration; if all responses are no, they lead directly to the next level of evaluation (activity and participation). the yes responses feed into the loop that indicates a finding, based on the patient’s developmental age, with a process box for the number of characteristics found to be problematic. a persistent concern that arose from the critique was related to developmental norm expectations and at what point would symptoms be considered abnormal, as well as the number or the presence of criteria that would constitute an overall diagnosis of hypotonia. there were also debates around definitions of phasic and postural tone that required clarification and the presence of hypotonia with/without weakness and the implications thereof. in general, the critique sessions were useful in highlighting the possibility that less experienced clinicians may require additional guidelines for the algorithm to be of maximal benefit. moreover, a number of clinicians appeared unfamiliar with terminology of the icf, which indicated the need for potential training and knowledge translation. following the assessment of specific criteria and tests, the process flows to another process symbol, indicating body structure impairment. at this stage the clinician is able to then quantify the extent of the impairment and location, indicated as process boxes. the critique revealed unfamiliarity with icf terminology once more, as well as clinicians’ lack of awareness of descriptors for quantification (for example, mild, moderate, severe). it is a concern that almost a decade and a half later clinicians remain unaware of this taxonomy, given that the icf is the who’s international standard for measuring health and disability, in addition to being adopted by all 191 who member states in 2001 (who 2001). there were a number of clinicians who however indicated that the inclusion of the icf was beneficial given its universality. the response from the process symbol, body structure impairment (extent and location), as well as the loop from the no response on the clinical characteristics in determining low muscle tone then feeds into the activity and participation impairment decision symbol. this decision symbol has play within parenthesis, as this was indicated as being an important component from the preceding study (naidoo & joubert 2013). a checklist is once more provided for quantification of the impairment. the reason for ensuring that the loop returns to this stage is that a child requires holistic assessment and, if body structure impairments are not found, functional impairments still require investigation. the converse is also true, in that if there is body structure impairment, the child may inevitably have difficulties in functional areas that may be impacted by the body structure impairment. from this point of the algorithm, the assessment components – history and collateral information, body structure impairment, activity and participation – are complete. the aim of this study and of the development of this algorithm was to provide a guideline for decision-making. ending the algorithm at this point would have negated the holistic management of the child. on the basis of the body structure and activities and participation impairments, a child’s strengths and challenges are generated and merged, and appropriate intervention goals are then developed. if intervention occurs, a reassessment loop is created and returns to goal development. the loop ends on the output symbol, which characterises termination, discharge or referral to another professional. therapists within the sample articulated the benefit of a therapeutic plan, including intervention for management of the child that is under assessment. this is in keeping with therapeutic goals of intervention which consider holistic care. part of this holistic care includes referral to other professionals, which was indicated as being a crucial aspect to the team approach. if intervention does not occur, it feeds into the loop that ends in termination, discharge and referral to another professional. the no loop from the activity and participation symbol also ends in the message from user (output symbol). multiple end points and outputs may have been restrictive; hence all three were combined as opportunities for output. discussion the initial prototype of the clinical algorithm described in this paper contributes towards the holistic diagnosis of children who present with hypotonia. it was developed in response to the challenges expressed by the scientific community, given the value of the initial clinical assessment. the need for a common diagnostic language has been indicated in the literature for at least the last three decades (coffin-zadai 2007; jette 1989; norton 2007; rose 1989; sahrmann 1988) and continues into this decade (martin, westcott & wrotniak 2013). part of the need has been attributed to appropriate interventions and to assist with prognostication (coffin-zadai 2007; jette 1989; martin et al. 2013; norton 2007; rose 1989; sahrmann 1988). an evidence-based clinical algorithm was a suitable method of choice for ensuring a common language for decision-making in the assessment of hypotonia. formulation of evidence-based algorithms is said to be an increasing practice in both scientific papers and textbooks; however, their usefulness has been questioned, as many of the authors have been found not to adhere to the formal requirements (eitel, kanz & ma 2000; khalil et al. 2011). the international telecommunication union norm symbols, based on the iso norms, were incorporated more than a decade ago to adapt the algorithm for clinical practicability (khalil et al. 2011) and have thus been adhered to in this study. the algorithm described has been developed to assist in guiding clinicians in following a systematic process (described in detail in the ‘findings’ section) for identifying specific characteristics that are associated with low muscle tone, as well as in the choice of methods that will primarily aid the evaluation of the specific characteristics. it has been suggested that methods for writing clinical algorithms that represent expert consensus be sought in practice (margolis 1983). within this study, items included in the clinical algorithm, that is, clinical characteristics and methods and tests, have not been randomly assigned, but are rather the outcome of a previous rigorous consensus process (naidoo & joubert 2013). this clinical algorithm has also not been developed for implementation within any specific frame of reference, or within specific models of practice; however, aspects of the icf have been superimposed, to assist quantification of impairments. the provision of a qualifier checklist thus allows the clinician to quantify the degree of impairment, which has previously been indicated as a dilemma (naidoo 2013b). moreover, the algorithm allows for holistic assessment by the inclusion of collateral information (history) and functional limitations (activity and participation), as well as by the provision of an end point following assessment – towards intervention or referral to another professional, all towards the goal of holistic management. this algorithm is thus in keeping with sensory integration, development, neurodevelopmental and biomechanical frames of reference, when applied to children with hypotonia, and may thus be useful in a number of paediatric settings with no resource implications. seeking agreement amongst clinicians should be seen as a starting point for establishing criteria that are likely to have significant clinical sensibility and that can be tested to ensure validity. as a result, the initial critique was deemed a necessary procedure towards determining the potential pitfalls and strengths prior to plans for implementation. a number of factors that may affect the clinical usefulness of the algorithm were highlighted. barriers that were highlighted included aspects related to knowledge gaps of clinicians, issues around user-friendliness and formatting concerns. knowledge gaps were associated with the symptom of hypotonia itself, where there was a lack of understanding amongst some clinicians around the difference between phasic and postural tone, as well as in isolating the presence of hypotonia with or without weakness. previous studies (bodensteiner 2008; gowda, parr & jayawant 2008; igarashi 2004; jan 2007; prasad & prasad 2003, 2011; van toorn 2004) have clarified these aspects satisfactorily. however, this finding has highlighted the need to have these concepts clarified as an adjunct to the algorithm, towards a process of knowledge translation, in order to ensure that knowledge gaps will not impede the assessment process. additional gaps were evident in developmental norm expectations and familiarity with icf terminology. martin et al. (2013) introduced the term ‘hypotonia syndrome’, which they defined based on their two previous studies (martin et al. 2005, 2007), and in their description have drawn on the gross motor milestones as an indicator of developmental norms. harris (2008) also reiterated the use of developmental tests, and together these serve as examples of norms when assessing hypotonia. terminology commensurate with that of the icf was ensured in the algorithm in an attempt to ensure universality. unfamiliarity with terms can be addressed by clarification and definition of terms used again as an adjunct to the algorithm. user-friendliness and formatting were highlighted as additional barriers. user acceptability is essential and is sometimes dependent on whether the user believes that the proposal is a valid construct and whether the criteria set is easy to use (first et al. 2004). however, a clinician’s perception of a valid construct may be dependent on a number of personal factors, such as familiarity with the scientific literature, clinical experience and even practice setting (first et al. 2004). in order to ensure clinical acceptability, clarification of terms, provision of additional information and formatting aspects are considered essential towards the revision of the algorithm to ensure user uptake. strengths identified by the critique included aspects related to the evidence-based nature of the criteria included within the algorithm, the suitability of the algorithm in being merged or extending current practice, the potential of the algorithm in aiding more accurate decision-making, the suitability of the algorithm across age groups and the logical flow. these highlighted aspects contribute to our understanding of therapists in developing a diagnostic language for human movement systems and as being different from those articulated by physicians, which are often based in cellular pathology (martin et al. 2013). as a result, a more comprehensive evaluation, which includes signs (physical manifestations observed in the assessment) and symptoms (client reports) were interpreted as having been achieved by the development of this algorithm, with the identification of early warning signs or red flags to assist in early detection for early intervention. inevitably acceptance of this diagnostic language is essential in ensuring clinical utility of the algorithm. enablers for implementation included the attraction of a multidisciplinary team approach; guidelines to assist clinicians that may require additional knowledge; the use of universal terminology; and the fact that the algorithm is paper-based and dependent on the clinician’s prior skills and knowledge. the ease of user-friendliness is crucial in understanding user acceptability (first et al. 2004) and hence other practical issues, such as the length of time it takes to assess a particular criteria, as well as explanations of terms and so on, may need clarification in order to increase user uptake. the authors are also cognisant of the fact that, as clinical experience evolves, the opinions of experts may also change, together with their assessment and diagnostic practices. flexibility may thus be necessary so that the criteria may be re-examined and revised at intervals (graham, regehr & wright 2003) as new information and research is developed. conclusion in this paper, the process of development of an initial prototype of an evidence-based clinical algorithm is described, together with a process of scrutiny and critique. as with any new development, this study has been useful in identifying important aspects that are essential to revision of the algorithm for practice. aspects that have emerged include positive feedback with respect to the algorithm’s applicability and acceptability for practice, in addition to aspects critical for revision, such as concept clarification and a few practical issues. although this paper presents an initial critique, the algorithm continues to require peer review and critique, and thus the authors invite readers to engage with the current proposal, so that continued work towards refinement through feedback may be realised, prior to initiating a process of validation. acknowledgements the authors acknowledge dr v. chetty for assistance as a critical reader and the national research foundation of south africa via the thuthuka programme and the university of kwazulu-natal, which has supported this study in part. competing interests the study from which this paper has emanated is funded by the medical research council of south africa in terms of the national health scholars programme from funds provided for this purpose by the national department of health and the national public health enhancement fund. this publication was also made possible by grant number: 5r24tw008863 from the office of global aids coordinator and the u.s. department of health and human services, national institutes of health (nih oar and nih 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http://dx.doi.org/10.1177/0883073814531823 stewart, d.w. & shamdasani, p.n., 2015, focus groups: theory and practice, 3rd edn., sage publications, thousand oaks, ca. van toorn, r., 2004, ‘clinical approach to the floppy child’, cme 22(8), 449–455. world health organization, 2001, international classification of functioning, disability and health: icf, world health organization, geneva. world health organization & unicef, 2012, early childhood development and disability: discussion paper, world health organization, geneva. abstract introduction methods results the conceptual framework for self-advocacy discussion conclusion acknowledgements references about the author(s) babalwa p. tyabashe-phume department of psychiatry and mental health, faculty of health sciences, university of cape town, cape town, south africa department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa sharon r. kleintjes department of psychiatry and mental health, faculty of health sciences, university of cape town, cape town, south africa citation tyabashe-phume, b.p. & kleintjes, s.r., 2025, ‘a conceptual framework for self-advocacy by people with intellectual disabilities’, african journal of disability 14(0), a1594. https://doi.org/10.4102/ajod.v14i0.1594 original research a conceptual framework for self-advocacy by people with intellectual disabilities babalwa p. tyabashe-phume, sharon r. kleintjes received: 14 oct. 2024; accepted: 17 mar. 2025; published: 29 may 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with intellectual disabilities are generally not consulted in the development of public policies, which impact their lives, and little is known about how to best empower people with intellectual disabilities to enable them to participate in public policy processes. objectives: our article reports on developing a conceptual framework to support self-advocacy by people with intellectual disabilities in social and health-related policy development in south africa. method: our qualitative study was conducted using empowerment theory and integrated the concept of ubuntu as a guide and was underpinned by a phenomenological approach. data were collected through a scoping review, semi-structured interviews and focus groups. the scoping review was conducted using the joanna briggs institute (jbi) scoping review protocol. semi-structured interviews and focus groups were analysed using framework analysis. data sources were triangulated to develop the conceptual framework, using a process adapted from three approaches used to develop similar conceptual frameworks. results: data triangulation identified three core elements for self-advocacy: (1) personal development; (2) creating a supportive environment to facilitate the empowerment of people with intellectual disability; and (3) improved policy participation opportunities. conclusion: participation of people with intellectual disabilities in public policy decisions, which can improve their quality of life, can be supported by developing their capacity for participation and increasing policymakers’ understanding as well as facilitation of what is needed to support their participation. contribution: our study offers a framework for a comprehensive approach to supporting people with intellectual disabilities in participating in and influencing public policy processes that impact their lives. keywords: self-advocacy; intellectual disability; conceptual framework; empowerment; ubuntu; policy participation. introduction self-advocacy refers to the ability and skills to communicate verbally, in writing, using pictures or gestures on behalf of oneself to motivate for the meeting of one’s needs (mallander et al. 2018; petri, beadle-brown & bradshaw 2017). self-advocacy is particularly important for people with intellectual disabilities who have historically been excluded from contributing to issues important to them (goldberg & kleintjes 2022). different degrees of and sites for self-advocacy may be possible depending on a person’s capacity for participation and support available for this participation (goldberg 2019; kleintjes, lund & swartz 2013). self-advocacy can occur at the level of influencing others to have regard for one’s in-home choice-making, through to choice-making in school, neighbourhoods and occupational settings. this includes broader societal-level choice-making in civil society actions such as policy participation (petri et al. 2017). current principles and practices support the position that people with intellectual disabilities should enjoy a democratic right to self-representation in public policy development and implementation (capri et al. 2018; petri et al. 2017). however, people with intellectual disabilities still face restrictions in speaking up for themselves and standing up for their rights (capri et al. 2018). supporting them to express their opinions in public policy processes requires reasonable accommodations to account for participation restrictions that may be experienced because of cognitive and adaptive functioning impairments, as well as concerted efforts to remove existing discriminatory policy, organisational, procedural and practical barriers to participation (kleintjes et al. 2013). self-advocacy by people with intellectual disability was spearheaded by parents and individuals with developmental disabilities internationally during the 1970s (krueger, van heumen & van den helder 2024). over the years, the self-advocacy movement has grown globally, and many countries are moving in that direction, with the literature indicating that self-advocacy initiatives are more prominent in middleand high-income countries (henderson & bigby 2016; krueger et al. 2024). this is not to say that there are no challenges in these countries. in the united kingdom (uk), for example, self-advocacy movements have been negatively impacted by austerity measures, with budget cuts, including the reduction of funding of self-advocacy organisations (rouse et al. 2022). many people with intellectual disabilities and their families in south africa do not have adequate access to health, social and other related public services. there is also a notable gap in service provision between rural and urban areas in south africa, with the latter receiving higher-quality services. in particular, assistance for people with intellectual disabilities who exhibit challenging behaviours is inadequate. where community-based services are available, they are primarily run by non-governmental organisations (ngos), which also face several barriers to providing quality services, including funding constraints (daniels 2018). advocacy by service providers and family members to address policy and service gaps is important. however, self-representation is a powerful tool to persuade policymakers and implementers to address the needs of citizens with intellectual disabilities. goldberg (2019) argues that people with intellectual disabilities’ participation in self-advocacy at the level of public policy is supportive of their constitutional rights as citizens. this can provide them with opportunities to be heard in public processes and lessen the stigma that policymakers have towards them by challenging their views through exposing policymakers to these citizens’ contributions to the policy landscape. there is a strong disability lobby that supports the participation of people with disabilities in public policy processes, in particular for people with physical disabilities. there is some movement for the inclusion of people with psychosocial disabilities in policy-level engagements, but self-advocacy by people with intellectual disabilities is still lacking (kahonde 2023; kleintjes et al. 2020). small self-advocacy initiatives that include people with intellectual disabilities have been established in a few of south africa’s nine provinces, with the assistance of ngos, in particular, the western cape forum for intellectual disability (wcfid) and the south african federation for mental health (safmh) and some of its branches. the latter’s programmes aim to improve people’s ability to lobby, self-advocate and actively participate in initiatives that impact them. this also provides opportunities for individuals to comment on legislative, policy and service delivery developments, as well as address human rights violations. this work remains largely unfunded outside of meagre budgets raised by these ngos and falls short of the necessary capacity to be a strong, cohesive and representative voice for people with intellectual disabilities. there is still a significant need for active work to ensure that local intellectual disability organisations are sustainably developed, including self-advocacy groups. ideally, the involvement of people with intellectual disabilities and their families must be strengthened, expanding self-advocacy to promote inclusion and access to societal resources (anderson & bigby 2017). there have been attempts to provide a conceptual understanding of the actions needed to promote the participation of people with intellectual disabilities in various aspects of society (tyabashe-phume, nkala-shongwe & kleintjes 2024). no local or international frameworks were found at the time of writing to guide a comprehensive response to empowering people with intellectual disabilities and their supporters to improve their participation in policy development. this article is derived from the first author’s phd thesis (tyabashe-phume 2023), which aimed to develop a conceptual framework to guide self-advocacy for people with intellectual disabilities within a policy and service development context in south africa. we present the process of development and components of a conceptual framework for self-advocacy by people with intellectual disabilities in the service development and policy domain in this article. methods our qualitative study took a phenomenological approach to exploring the lived experiences of participants to gain deeper insights into their views on the focus of our study. this approach was most suitable to conceptualise, through interpretation of the data, the core elements of a support system required to support self-advocacy efforts by people with intellectual disabilities. data collection to inform the framework’s elements we collected data through a scoping review, semi-structured interviews (ssis) and focused group discussions. the purpose of the scoping review was to identify key concepts relevant to supporting people with intellectual disabilities’ direct policy participation. the scoping review also aimed to identify the existing conceptual frameworks for self-advocacy, which could inform the methodology for developing the conceptual framework. by following joanna briggs institute’s preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (peters et al. 2020), an initial 168 articles were identified after a rigorous inclusion and exclusion process, with 20 articles finally included for review (tyabashe-phume et al. 2024). twenty-five ssis were conducted with five groups of stakeholders, including people with intellectual disability (n = 5), their parents (n = 5), carers or supporters (n = 5), policymakers (n = 5) and service providers or managers (n = 5). the ssis were aimed at exploring these stakeholders’ views about the need for self-advocacy by people with intellectual disabilities, opportunities for and barriers to self-advocacy and strategies to overcome these barriers. box 1 details the selection requirements for participation of people with intellectual disabilities. the study participants were limited to individuals who had certain verbal, social and cognitive capabilities and some understanding and experience of self-advocacy. box 1: eligibility of participants with intellectual disabilities. because of strict coronavirus disease 2019 (covid-19) regulations in place at the time of our study, all interviews were conducted online via zoom and whatsapp calls. easy-to-read information sheets and consent forms, and assistance by a supporter well known to them, were put in place as the means of reasonable accommodation. data analysis scoping review two authors independently extracted data from 2 of the 20 included articles and then compared and finalised the extraction process, after which the first author extracted data from the rest of the article. relevant scoping review data were extracted to forms for both quantitative and qualitative studies using population, intervention, comparison, outcome, study (picos) design and sample, phenomenon of interest, design, evaluation, research (spider) type, respectively (cooke, smith & booth 2012). semi-structured interviews interview data were analysed with the aid of the atlas.ti software (version 9.1.7), using framework analysis, a structured form of thematic analysis that identifies similarities and differences in qualitative data as well as connections between various data elements in order to derive themes, subthemes and conclusions that are either descriptive or explanatory in an iterative process (gale et al. 2013; ritchie & spencer 2002). data triangulation the process of triangulating the data was derived from three frameworks. the first framework, sourced during an initial overview of the literature, has been used to strengthen the participation of individuals with psychosocial disabilities and carer involvement in the national institute for mental health england (nimhe), an organisation affiliated with the national health service in the uk (hascas 2005). the scoping review found two further frameworks: cook’s multicultural and social justice counselling competences framework (cook 2017) and test and colleagues’ self-advocacy framework (test et al. 2005). the methods employed to create these three frameworks were considered while determining the method to develop our study’s conceptual framework. table 1 summarises the processes used in the three frameworks and their adaptation for use in our study. table 1: guiding frameworks. drafting of the conceptual framework using the triangulated data, an initial draft of the elements comprising the conceptual framework was developed by the first author based on thematic categories derived from the findings, as elaborated hereunder. focused group discussions these were conducted to better understand how our study participants felt or thought about the conceptual framework that has been developed (de vos et al. 2011). participants who had consented to critique the draft conceptual framework were invited to provide their feedback on whether the authors had accurately captured their views in interpreting the data they had provided. two focus group discussions were convened. the first focus group discussion included policymakers and service managers (n = 5). the second group included parents and carers or supporters (n = 3). the conceptual framework was presented to the groups, and each element was explained in detail. then, the participants were given an opportunity to ask questions and provide feedback. the conceptual framework was translated into an easy-to-read document for participants with intellectual disabilities. although the review with individuals with intellectual disabilities was initially planned to be a focus group, it was not feasible because of covid-19 restrictions on face-to-face meetings, the need to use zoom, and scheduling conflicts among participants. consequently, the review was conducted through two individual discussions with participants with intellectual disabilities with the support of their support personnel. ethical considerations an application for full ethical approval was made to the university of cape town’s faculty of health sciences research ethics committee, and ethics consent was received (hrec no. 019/2021). permission was also sought and received from three government departments (departments of health, basic education and higher education and training) to conduct interviews with officials in those departments. written informed consent was obtained from all individual participants involved. results our findings yielded five main thematic categories during an iterative analysis process. these categories were instrumental in identifying and formulating the essential elements of the conceptual framework designed to support self-advocacy by people with intellectual disabilities in the context of policy and service development in south africa. table 2 summarises the thematic categories elicited from the triangulated data sources. table 2: thematic categories from the scoping review and semi-structured interview. meaning of self-advocacy self-advocacy was defined as the ability of people with intellectual disabilities to speak up for their rights, make informed decisions, and advocate for their needs. findings emphasised the importance of skills such as self-confidence, communication, assertiveness, decision-making and public speaking. one participant with an intellectual disability, for example, stated that: ‘self-advocacy actually means that i can talk for myself, i can protect myself, and i can stand up for myself! because, you know, in the world, there are people who don’t regard people with disabilities as advocates or don’t seem as an advocate to them. so, i can actually tell them, no, i am a person, and i can talk for myself. no one can make decisions for me; i can make my own decisions.’ (participant t2, female, self-advocate with intellectual disability) most participants emphasised that self-advocacy involves people with intellectual disabilities asserting their rights, including constitutional and human rights, challenging policies that undermine these rights, and advocating for greater inclusion and active participation in society. the interview findings aligned with the scoping review, emphasising that people with intellectual disabilities should be included in decision-making processes to voice their opinions on matters that impact them (perkins 2010; petri et al. 2017). like all individuals, they possess equal rights, including the right to contribute to decisions that affect their lives: ‘everyone within the country has a constitutional right to be heard and, and there’s a constitutional right to participate in society just like everyone else, more than anything … and self-advocacy allows people with disabilities to do that, allows people to participate just like everyone else.’ (participant s3, male, service manager) ubuntu and interdependence (supported self-advocacy) people with intellectual disabilities often rely on support from those around them. some participants with intellectual disabilities expressed that developing self-advocacy skills requires assistance: ‘i would say, the kind of support that would help me to be able to advocate in front of the whole nation. where i could stand in front of everyone and speak up … some people like me need to learn to speak up for themselves. i also learnt to speak up from this programme (self-advocacy group).’ (participant t1, female, self-advocate with intellectual disability) participants identified several essential personal skills for people with intellectual disabilities to become self-advocates, including communication, assertiveness, confidence, public speaking and leadership, among others. support systems, including peer mentoring, family involvement and professional assistance, were also noticed as playing a critical role in enabling self-advocacy. findings highlighted the need for co-presentation of ideas, where supporters assist people with intellectual disabilities in expressing their views while ensuring their autonomy. access to resources, tailored accommodations and existing opportunities, such as self-advocacy groups, were identified as pivotal. however, participants felt that there were limited opportunities for participation in south africa, necessitating the creation of more inclusive programmes and platforms to promote active participation. barriers to self-advocacy barriers to self-advocacy included individual challenges such as limited communication skills, societal stigma and structural exclusion from decision-making processes. participants observed that people with intellectual disabilities are often infantilised or denied the opportunity to make decisions. policymakers’ lack of knowledge and understanding further restricts inclusion. supported decision-making, where individuals are guided without coercion, and advocacy by peers or supporters were suggested as solutions to overcome these barriers. addressing discrimination and fostering respect for autonomy were also emphasised: ‘there’s a lot of stigma around being belittled. people expect you to follow them. instead of asking me, what do you want, or don’t you want to or do you want me to decide for you?’ (participant t2, female, self-advocate with intellectual disability) inclusive policy environments inclusive policy environments require proactive efforts from policymakers, supporters and service providers to ensure the participation of people with intellectual disabilities. current exclusionary practices were attributed to a lack of understanding of intellectual disabilities and inadequate accommodations. one policymaker stated: ‘i do think that professionals not really understanding intellectual disability and their needs is a problem when it comes to policy-making processes.’ (participant pol 5, female, policy maker) recommendations for creating supportive policy environments included providing accessible materials to people with intellectual disabilities, fostering peer-to-peer support and enabling voluntary participation. participants emphasised that inclusive environments should empower individuals to express their needs freely and provide individualised support to facilitate meaningful engagement in policy processes. capacity building several participants were of the view that capacity building is an essential element needed to support self-advocacy for people with intellectual disabilities. key components identified were skill-building to enable meaningful self-advocacy, training and development for those supporting people with intellectual disabilities, and capacity building for policymakers and service managers to foster inclusive policy environments. findings from the scoping review and interviews emphasise that training and the act of participating in policymaking initiatives and processes are needed to enhance self-advocacy abilities and to develop essential self-advocacy skills. policymakers and service managers also identified their own need to be educated about intellectual disabilities. they felt that training would equip them with the skills to effectively engage with individuals with intellectual disabilities and provide the necessary support during policymaking processes. they noticed that raising awareness about and offering guidance on implementing reasonable accommodations in policy environments could significantly improve the participation of individuals with intellectual disabilities. during the focused group discussions, policymakers and service managers suggested using positive language in the framework. they emphasised the need for people with intellectual disabilities to understand their rights and policies. they also highlighted the importance of supporting self-advocacy and capacity building, as well as the need for funding to support self-advocacy programmes. parents and supporters found the conceptual framework practical, although they did not propose changes. some parents initially doubted their children’s ability to self-advocate in policy, but one parent gained confidence after seeing the support provided by the framework: ‘like i said before and during our interview, we need to invite more people with intellectual disability to review policies and we need to consult them more. you know, their contributions can go a long way in developing policies. when we know what they have to say about their rights it will make our jobs easier, it will make things easy for everyone actually. just like we invite people without disabilities to comment on policies, we should make sure that people with intellectual disability are invited as well, for representation, you know.’ (participant pol 1, female, policy maker) storytelling emerged as an important tool for people with intellectual disabilities to convey their policy input. this was also demonstrated during their feedback interviews. participants with intellectual disabilities were supportive of the framework, elaborating on the framework components based on their lived experiences: ‘so, like, you know, the government decides that they will give us, us people with disability the sassa grant. so, they say they will give people with disabilities a grant of this money, but now they do not ask us, like maybe to say how much money do we think we will need for the grant that we think will be enough. like they just decide for us and it’s not nice, man.’ (participant t4, male, self-advocate with intellectual disability) participants’ feedback was incorporated into the draft to arrive at the final version of the conceptual framework. the conceptual framework for self-advocacy the conceptual framework (figure 1) was derived from strategies recommended for creating and improving policy participation by people with intellectual disabilities. it is grounded in the principles of the empowerment theory and the concept of ubuntu. figure 1: conceptual framework for self-advocacy by people with intellectual disabilities. the framework consists of three interconnected elements: personal development for self-advocacy, creating a supportive environment for self-advocacy and improved policy participation for people with intellectual disabilities. the discussion begins with personal development and then progresses from left to right in figure 1, explaining the other elements and how they interconnect. personal development for self-advocacy the primary focus of this element of the conceptual framework is drawn from participants’ views that people with intellectual disabilities will require self-development to facilitate their self-advocacy in policy processes. this element comprises three sub-elements: self-awareness, awareness of rights and policy support and awareness of the environment. self-awareness this sub-element relates to the capacity to know who you are, your values, beliefs and biases. it emphasises exploring the existing personal, interpersonal and environmental abilities and skills of individuals with intellectual disabilities, as well as identifying areas that need further development to reach their personal goals. self-awareness is vital for self-advocacy, as individuals must first understand themselves before they can effectively communicate their needs and desires to others. awareness of rights and policy support the second sub-element focuses on the need for people with intellectual disabilities to know what their rights are and the extent to which policies address their rights. this is important for them to become aware of infringements of their rights, enabling them to make informed decisions about what they might want to advocate for in terms of rights infringements. it also assists in their using rights-based policies to self-advocate for their needs. moreover, they need to recognise both their fulfilled and unmet service needs, understand the services they are entitled to and provide their views on whether they experience these services as adequately provided. awareness of the environment the third sub-element relates to people with intellectual disabilities being aware of and knowing their environment and the world at large within their capabilities. this involves being aware of their support networks, such as family, friends and peers, as well as governmental structures and opportunities for self-advocacy within public sectors. in addition, it includes recognising other community-based support systems, like local organisations working with people with intellectual disabilities, which can serve as allies. another important aspect of environmental familiarisation is exposure to these environments, as well as allocation of sufficient time and support to learn and gain confidence in engaging with others in different formal and informal social spaces in which they may wish to engage. creating a supportive environment for self-advocacy the second element of this conceptual framework focuses on how families, supporters, service managers, providers and policymakers can assist people with intellectual disabilities in self-advocacy. the primary contention of this element is that the empowerment of people with intellectual disabilities to self-advocate in policy processes is most effectively done when they can rely on those around them when they wish to advocate for themselves. supported self-advocacy recognises the mutual reliance between individuals with intellectual disabilities and their families, friends and other supporters. when people provide support to people with intellectual disabilities to make, carry out and experience the benefits of their own choices, it can boost their sense of being included, valued, autonomous, competent and self-directed (anderson & bigby 2023). the understanding of the concept of interdependence as used in this research is best described in terms of ‘ubuntu’, an african philosophy that emphasises ‘being self through others’. ubuntu is a form of humanism, which can be expressed in the phrase i am because of who we all are (mugumbate & andrew 2013). ubuntu holds that every person forms a link in a chain of human relationality, which should be reflected in the interconnectedness of people within society. this conceptual framework incorporates this philosophy of ubuntu, observing that each person is embedded in reciprocal interactions, which can be leveraged for mutual support of each other to be their full selves, not overshadowing or dominating one or the other. genuine support for people with intellectual disabilities in self-advocacy must prioritise their own perspectives rather than supporters or family members deciding what is best for them. through the philosophy of ubuntu, individuals with intellectual disabilities can gain empowerment by receiving assistance in areas where they face challenges to communicate their needs, choices and decisions. preparing people with intellectual disabilities for participation involves establishing supportive systems and engaging support personnel in this process (roberts, ju & zhang 2016). these key individuals play an essential role in preparing people with intellectual disabilities for active involvement. support systems include community members in both formal and informal positions of power, ngos working with individuals with intellectual disabilities, and allies such as friends, peers and family. in line with human rights and social inclusion, these support persons and organisations are crucial in the south african community for facilitating the participation of people with intellectual disabilities in policy development and enabling self-representation or supported decision-making. to effectively support people with intellectual disabilities, role-players must act within their organisations to create more inclusive policy spaces, enhance collaborations with existing disability structures and reinforce disability-led forums. people with intellectual disabilities and their allies should also increase their involvement with organisations such as the south african human rights commission to challenge policies and practices that violate their rights. additionally, they should engage with government departments responsible for overseeing policies and programmes related to women, children and people with disabilities to advocate for their needs and ensure their priorities are included in the government’s agenda. the framework posits that for people with intellectual disabilities to participate more fully in self-advocacy, they require empowerment through two main sub-elements: (1) empowerment through self-advocacy skills development; and (2) empowerment through supported self-advocacy. empowerment through self-advocacy skills development self-advocacy skills-building can strengthen self-advocates’ sense of personal identity, help develop supportive friendships, enhance their sense of being part of a community of common interest and promote self-determination (balint-langel et al. 2020; grove 2015). self-advocacy skills can collectively be considered self-determination skills (grove 2015). empowerment in this regard, then, refers to supporting people with intellectual disabilities to learn practical skills to assist them in self-advocacy. examples of these areas of skill that arose in our study include public speaking, reading and writing skills in alternative communication methods, decision-making skills and leadership skills. for people with intellectual disabilities who cannot read or write, supporters can play a valuable role as readers and scribes for their ideas. they can request that information be written in an easy-to-read format and learn to use alternative communication methods, such as using pictures, recording videos or audio, social media and story-sharing to convey their ideas and advocate for themselves. while help can be requested from a supporter or family member to help think through their ideas so that they can make informed decisions about what they will choose to say or do as a self-advocate, decision-making skills are important to advance their ability to make self-directed decision-making over time. additionally, leadership skills are important for self-advocates. they may, in becoming aware of the common needs of other people with intellectual disabilities, develop interest in speaking up both for themselves and for other people with intellectual disabilities who cannot speak for themselves, that is, to both self-advocate and to advocate on behalf of others. empowerment through supported self-advocacy we have found that it is through ubuntu that policymakers, service providers, supporters, family and friends can be encouraged to create a comfortable and inclusive policy environment. the results indicated that these stakeholders need reorientation to overcome outdated views and attitudes towards people with intellectual disabilities. stakeholders who participated in our study noticed a need for training of policymakers, service providers and supporters about intellectual disability and ways in which they can create inclusive policy environments that allow meaningful participation by people with intellectual disabilities, including what might constitute appropriate reasonable accommodations for people with intellectual disabilities. policy participation opportunities for people with intellectual disabilities the third element focuses on the need for a focused effort to ensure real opportunities for policy participation that allow for the inclusive involvement of people with intellectual disabilities. this participation should be personally life-enhancing. participants’ responses highlighted that when people with intellectual disabilities are actively involved in policy participation, there will be a positive impact that can potentially improve their quality of life. participants felt that they would experience feelings of being respected, of being treated with dignity, of experiencing personal satisfaction and empowered identities through the ability to voice their perspectives and make their own decisions, and through experiencing the conviction that their efforts contribute meaningfully to their lives and the lives of others with and without intellectual disabilities. participation should also result in measurable influence on policy outcomes. their input should be reflected in the inclusion of their views in policies on what should support their rights and needs. in the medium to long term, policy reviews and impact studies should indicate meaningful improvements in these citizens’ lives. ubuntu, in this regard, emphasises that policymakers need to accept that it is important for them to facilitate people with intellectual disabilities having access to peer and other support during policy participation. in addition, funding is required to develop self-advocacy training and to provide resources for people with intellectual disabilities and their supporters to prepare, attend and provide input to policy-making processes. the framework shows that, at the political level, people with intellectual disabilities should be given meaningful – not token – opportunities to engage more actively in the democratic processes of the state. participants, for example, observed that care should be taken to ensure that public invitations to consultation meetings to comment on drafts of new policies should include people with intellectual disabilities and their supporters and provide adequate time for pre-meeting preparation of comments. in addition, policymakers should provide accessible forms of policy communications, which self-advocates or supporters can utilise in preparing for participation as well as permitting the opportunity to submit commentary via alternative communications to the usual written commentary, for example, video or auditory formats. discussion currently, south africans with intellectual disabilities do not participate equally in democratic processes. for instance, they are prohibited from voting or standing for election because they are considered to be mentally incompetent (capri & swartz 2018; combrinck 2014). they are thus denied political equality (kleintjes et al. 2020). goal 16 of the sustainable development goals (sdgs) calls for non-discriminatory laws and policies that are inclusive of people with disabilities (united nations 2016). our results propose methods through which people with intellectual disabilities can be prepared for and supported to participate in electoral and other political and policy-related processes to have their voices heard. in south africa, ngos supporting people with intellectual disabilities to self-advocate are still limited, with the key organisations being the wcfid as well as the safmh. work to support self-advocacy initiatives are variously developed in these organisations at the time of writing this article. the history of people with intellectual disabilities organising for self-advocacy elsewhere strongly suggests that the best practice to support and capacitate people with intellectual disabilities in south africa would be to consider expanding current efforts to also support these self-advocates to spearhead their own self-advocacy movements (ledger & tilley 2006). experiences from countries with established self-advocacy organisations indicate that transitioning to more formal structures can help people with intellectual disabilities feel a sense of ownership over self-advocacy efforts as experts by experience. this would involve a collective effort to collaborate with people with intellectual disabilities to mobilise to form their own self-advocacy groups with the support of their allies. however, this approach must consider challenges faced by current self-advocacy organisations, such as securing funding and providing adequate support to experts by experience within these groups (ledger & tilley 2006; rouse et al. 2022). further research would assist in addressing this for local implementation. as suggested in the results and supported by the literature (anderson & bigby 2017, 2023), policy participation can promote feelings of self-efficacy and well-being through the ability to voice their perspectives and make their own decisions and through experiencing the conviction that their efforts contribute meaningfully to their lives and the lives of others with intellectual disabilities. with active policy participation, there can be a shift in the inclusion of people with intellectual disabilities (kleintjes et al. 2013). this shift is central to enabling people with intellectual disabilities to move from being observers in deliberations about their lives to central, valued role-players within the policy development environment. limitations it is important to observe that the participants with intellectual disabilities in our study are not representative of all people with intellectual disabilities but rather were limited to people who are already self-advocates who are able to speak up for themselves on their own or with support and other accommodations. the resultant conceptual framework does not consider strategies for inclusion and participation for people with intellectual disabilities who have very high support needs and very limited capacity for policy influence. a limitation of the framework, then, is that it does not explore what is feasible to include for people with high support needs in efforts to advocate for their rights or co-advocate along with their supporters, namely families, service providers and other people with intellectual disabilities who do more readily have the capacity for self-advocacy. at present, in a south african context, people with greater degrees of intellectual disabilities are included by family and professional advocates in their advocacy efforts, the power of their very presence in political and policy spaces giving greater credence to families’ and service providers’ advocacy on their behalf. conclusion we aimed to develop a conceptual framework for self-advocacy by people with intellectual disabilities to engage in social and health-related policy-making and prioritising in south africa. the framework emphasises the requirements for people with intellectual disabilities to engage in self-advocacy for their policy needs. it also identifies practical steps needed to ensure their active inclusion in policy processes. the framework breaks down the necessary conditions for individuals to thrive as self-advocates. it highlights the actions required by policymakers, service providers and supporters to foster an inclusive policy environment. furthermore, it highlights the importance of focused efforts to ensure policy participation opportunities that allow people with intellectual disabilities to participate inclusively. we emphasise that, despite contextual differences, the disempowerment, exclusion and the fight for empowerment and respect for their rights are universally shared by people with intellectual disabilities, including in south africa. to enable policy participation, barriers should be removed and more inclusive environments should be created. increased opportunities should be provided for people with intellectual disabilities to engage in the development of policies and services that enhance their well-being. acknowledgements this article is partially based on the author’s thesis entitiled ‘development of a conceptual framework to inform self-advocacy for social and health-related policy priorities of adults with intellectual disability’ towards the degree of doctor of philosophy at the department of psychiatry and mental health, university of cape town, south africa, with supervisor prof. sharon kleintjes, received june 2023, available here: https://open.uct.ac.za/server/api/core/bitstreams/13a793a7-3ec6-4a5a-b8f2-83967fbfeedc/content. the authors would like to acknowledge prof. roy mcconkey for his contribution to reviewing a draft of the article. competing interests the authors reported that they received funding from the national research foundation (nrf), the south african medical research council (samrc) and the vera grover scholarship, which may be affected by the research reported in the enclosed publication. the authors have disclosed those interests fully and have implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions b.p.t-p. conducted the research as part of her phd studies and developed the conceptual framework. s.r.k. supervised this work. b.p.t-p. and s.r.k. discussed the results and contributed to the final article. funding information the authors would like to thank the following organisations who funded the research: national research foundation (nrf): the financial assistance of the nrf towards this research is hereby acknowledged. opinions expressed and conclusions arrived at are those of the authors and are not necessarily to be attributed to the nrf. south african medical research council (samrc): the study was also funded by the samrc through its division of research capacity development under the bongani mayosi national health scholars programme from funding received from the public health enhancement fund or south african national department of health. the content hereof is the sole responsibility of the authors and does not necessarily represent the official views of the samrc or the funders. the vera grover scholarship: the financial assistance of the vera grover scholarship fund towards this research is hereby acknowledged. opinions expressed and conclusions arrived at are those of the authors and are not necessarily to be attributed to the vera grover scholarship fund. data availability the data that support the findings of this study are available on request from the corresponding author, b.p.t-p. the data are not publicly available because it could compromise the privacy of the research participants. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, or agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references anderson, s. & bigby, c., 2017, ‘self-advocacy as a means to positive identities for people with intellectual disability: we just help them, be them really’, journal of applied research in intellectual disabilities 30(1), 109–120. https://doi.org/10.1111/jar.12223 anderson, s. 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tyabashe-phume, b., 2023, ‘development of a conceptual framework to inform self-advocacy for social and health-related policy priorities of adults with intellectual disability’, doctoral thesis, university of cape town, faculty of health sciences, department of psychiatry and mental health, viewed june 2023, from http://hdl.handle.net/11427/38548. tyabashe-phume, b., nkala-shongwe, n. & kleintjes, s., 2024, ‘exploring conceptual frameworks to support self-advocacy by people with intellectual disability: a scoping review’, life span and disability 27(1), 69–94. united nations, 2016, the sustainable development goals report 2016, office of the united nations high commission for human rights, geneva. abstract introduction research methodology findings discussion conclusion acknowledgements references about the author(s) thembi a. phala department of early childhood education, college of education, university of south africa, pretoria, south africa anna hugo department of language education, arts and culture, college of education, university of south africa, pretoria, south africa citation phala, t.a. & hugo, a., 2022, ‘difficulties in teaching grade 3 learners with reading problems in full-service schools in south africa’, african journal of disability 11(0), a906. https://doi.org/10.4102/ajod.v11i0.906 original research difficulties in teaching grade 3 learners with reading problems in full-service schools in south africa thembi a. phala, anna hugo received: 10 june 2021; accepted: 25 nov. 2021; published: 10 feb. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: many primary school learners in south africa, including those in so-called full-service schools (fsss), are reading below their grade level. objectives: the authors of this article embarked on a study to find out what difficulties a group of grade 3 teachers in full-service school faced to support their young custodians with reading problems. methods: the research followed a qualitative approach using semi-structured interviews and classroom observation. results: the data showed that the reading problems experienced by some grade 3 learners can be attributed to the multiple levels of the education system. on the macro system as set out by bronfenbrenner’s ecological systems theory where the government and provincial departments operate, the first issue was the national department’s progression policy which allows grade 2 learners to progress to grade 3 without the required reading competency. the second issue was a lack of enough readers and overcrowding in classrooms. problems on the microsystem included aspects such as the language of learning and teaching; learners’ reading skills and attitudes towards reading; teachers’ lack of knowledge about diverse learning needs and parental support. conclusion: it is envisaged that the study will contribute to an understanding of the teachers’ difficulties in teaching reading so that the grade 3 learners’ reading problems especially those in fsss could be dealt with through combined efforts of all the stakeholders in the education system. keywords: full-service schools; grade 3 teachers; learner support teachers; reading problems; bronfenbrenner’s ecological systems theory. introduction reading is one of the most significant language skills that learners have to master at school, and it is important that this should be performed in the foundation phase (grade 1 – grade 3). it is a skill that permits learners to understand the meaning of written and printed material and a means of communication and language acquisition, sharing ideas and information (reutzel & cooter 2010:25). for mercer, mercer and pullen (2011:263), reading is the most important pointer of achievement in life and school. in school, learners need to read more independently and comprehend the printed material when given tasks in the various subjects that they have to learn, especially after their first three years at school. failure to read fluently and with comprehension results in high numbers of learners dropping out of school and could delay the learners’ learning potential (pretorius et al. 2016:13). reading problems could result in challenges at school and could also lead to the learners becoming stigmatised in the classroom. based on various reading assessments that were conducted over a couple of years in south african primary schools, there are many primary school learners who fail to read fluently and with comprehension. in studies conducted, the progress in international reading strategy (pirls) revealed, for example, that in 2011 in south africa 61% of learners could not read or write at the appropriate age levels and in 2016, 78% of grade 4 learners were unable to read for meaning in any language, which included their home languages (hls), respectively (howie et al. 2017:2). in another study, the annual national assessment (ana) revealed in 2014 that the national average performance in hl for grade 3 learners stands at 56% (department of basic education [dbe] 2014:41). the group of grade 3 teachers, who acted as participants in the qualitative study discussed in this article, were teaching in so-called full-service schools (fsss) (to be discussed later). it is envisaged that by describing and understanding the difficulties that the teachers face when remediating the reading problems of learners, the teachers with the help of the school management will be in a better position to support the learners to acquire reading proficiency. during interviews with a group of teachers and during class observation, data were collected and the analysis of this data revealed the seven main themes. in the themes, problems that the grade 3 teachers experienced became clear. if these problems could be addressed, the learners could acquire the necessary reading skills to make a success at school so that they could eventually become successful members of their communities. inclusive education in south africa inclusive education (ie) is a phenomenon which is embraced worldwide because of its principles of social justice, equity and access to quality education. in south africa, the policy for ie was introduced in 2001, and it is defined as a system that recognises that all children and young people can learn, and that they require support to do so (department of education 2001:6). inclusive education is therefore aimed at providing quality education to all learners regardless of their barriers to learning. barriers to learning, according to the dbe (2014:vii), are the difficulties that arise within the learners, learning sites and education systems that preclude access to learning and development. difficulties that arise within the learners are referred to as intrinsic barriers such as impairments, whilst those that arise outside the learners are referred to as extrinsic barriers, which could arise as a result of circumstances at school and in the environment. in the south african education white paper 6 (ewp6) three types of schools to accommodate and support diverse learning needs of learners, including learners who experience reading problems, are identified. the three types of schools are mainstream schools, special schools which also act as resource centres (ssrcs) and fsss (department of education 2001:21–22). mainstream schools in south africa mainstream schools are also referred to as ordinary or regular schools. the majority of learners in south africa attend mainstream schools. these schools are set to cater for learners who require low-level need of support such as psychosocial support, visual or auditory processing problems (gauteng department of education 2011:15). in order to build and maintain ie in future, it was decided by policymakers that teachers in mainstream schools should also receive support from the school districts, fss and special schools as resource centres where and when needed. special schools in south africa special schools continue to exist as before in south africa. these schools are strengthened so that they also serve as resource centres for mainstream schools and fsss. these schools make provision for learners who require intensive levels of support such as extreme disabilities or extensive needs such as muscular or neurological disorders, who are hard of hearing or deaf, have low visions or who are blind, severely cognitively impaired and have serious behavioural disorders (gauteng department of education 2011:16). it was realised that there were learners in the mainstream in south african schools who had barriers to learning, but that they were not accommodated in the mainstream schools and special schools. these learners are predominantly those learners who had language problems and reading problems and those who had problems with mathematics. these problems are not as a result of an intellectual impairment. with regard to a reading problem, it could be as a result of an intrinsic barrier to learning such as dyslexia or as a result of external factors such as the socio-economic circumstances of learners, family factors, lack of resources at home and at schools and teachers’ training. these learners often became stigmatised as they did not make academic progress at school and could not keep up with the rest of the class. in order to provide additional support for these learners, fsss were introduced. full-service schools in south africa full-service schools are intended to provide a quality equitable education to all learners, regardless of their learning abilities (dbe 2010:7). one of the reasons why so-called fsss were introduced into the south african school system was to provide support to learners with mild-to-moderate barriers to learning, including reading problems (dbe 2010:21). with regard to inclusive education in south africa, reference is made to intrinsic and extrinsic barriers to learning. intrinsic barriers refer to conditions within a learner and extrinsic barriers that are conditions outside a learner. moderate level of support refers to the type of support that the teachers can offer to learners who experience mild cognitive, hearing and visual impairments and learning problems including reading problems in their classrooms with additional assistance received from the therapists, counsellors or learner support teachers (lsts). the additional assistance of a therapist, counsellor or lst would only be sought if necessary to attend to a specific need of a learner. learner support teachers are qualified teachers who have specific knowledge of remedial education, special needs education and ie (gauteng department of education 2004:3). in addition, mahlo (2013:16) saw these teachers as having specialised skills and competencies to adapt the curriculum to suit the diverse learning needs of learners and strengthen support in fsss. the teachers in fsss rely on the department of education and district offices for additional training and improvement of their knowledge to support their learners. this is especially true when teachers in the foundation phase have to support learners with reading problems. strengthening support in fsss requires a more collaborative effort from all stakeholders in the education system. collaboration needs to happen inside and outside the school where different structures are working together. in fsss, the following three collaborative structures are identified, namely the school-based support team, district-based support team and inter-collaborative structure (dbe 2010:22–23). the first structure is found in the school, which relates to bronfenbrenner’s micro system, whilst the last two structures are found outside the school, which relate to bronfenbrenner’s meso and macro levels. bronfenbrenner’s ecological systems theory is the frame of reference in this article and will be discussed in the research methodology section. reading in grade 3 with reference to reading problems grade 3 is the last grade of the foundation phase. during the last year in this phase, learners should acquire the necessary skills ‘to learn to read’ to be able to ‘read to learn’ in grade 4 and beyond (spaull 2017). in the study discussed in this article, the grade 3 learners were taught in their hls, which were sepedi and isizulu, and in one school they were taught in english. this is in line with the language policy of the dbe. when they teach reading, teachers in the foundation phase have to know the various reading methods and reading strategies. in south africa, grade 3 learners are expected to read at grade level and also achieve a high level of communicative competence for acquiring reading competencies (dbe 2011:7–9). however, it is evident from research such as the progress in international literacy study conducted in 2008 and 2016 (govender & hugo 2020:12) that most grade 3 learners, including those in fsss, have not reached the expected level in reading and are left behind as a result. children grow up and live under different circumstances and each living environment influences their motivation and ability to learn to read. a child’s home, school and the community form part of his or her environment. the central environment for any person is the home because this is where a young learner’s development and cognitive growth start (jennings, caldwell & lerner 2010:25). at home, the parents could take a leading role to assist the learners in learning to read. many studies have indicated the role of parents as agents towards influencing the learners’ reading behaviour. according to van bergen et al. (2016:147), there is a close link between children’s reading abilities and attributes of the family environment such as the educational achievements of the parents, if the parents read and whether reading material is available at home. however, in his research, ramphele (2009:11) found that factors, such as high levels of poverty and socioeconomic status, could prevent parents from fulfilling this task. the aim of the study is to help teachers and other persons such as the lst, therapists and the management team involved in education in primary schools to understand the reasons why grade 3 teachers in fsss, and for that matter in mainstream schools, experience difficulties to teach reading to their young custodians who have reading problems and whose reading abilities were below the standard expected of grade 3 learners. there are many reading problems such as auditory memory, reversion of letters such as band or m and w, the blending of sounds or understanding the meaning of words. the reasons are to be found in various systems in children’s lives. research methodology a qualitative research approach was used in this study, as it was aimed to gain an understanding of the difficulties from the teachers’ point of view that they face whilst supporting grade 3 learners in fsss who experience reading challenges. according to denzin and lincoln (2020:3), qualitative research explains and reveals what occurs in true-to-life situations such as a school and a classroom. creswell (2014:4) added that qualitative research provides researchers with the opportunity to investigate the meaning that people attach to personal and social problems. in order to structure the study, purposive sampling was used to select the participants, and we selected teachers who had experience in teaching reading to grade 3 learners. grade 3 class teachers (gr3ct) and lst in fsss were purposively identified from three fsss in one of the districts in gauteng (one of the provinces in south africa). all fsss were from township (in south africa, in a suburb where predominantly black people live) areas. the specific fsss were selected because of their geographical setting and accessibility for us to collect data. it was also based on the district’s chief education specialist’s recommendation that the schools were practicing ie and that they were amongst the first round of mainstream schools in the district that were transformed into fsss. in total, 18 teachers who comprised 12 gr3cts and 6 lsts were involved in the actual research, and another grade 3 class teacher was involved in a pilot study. all the participants in the study were females and well-qualified primary school teachers. eight of them had primary school teacher’s diplomas. two had senior primary diplomas, one had a secondary school diploma, two had a ba degree and a teacher’s diploma and four had honours degrees. the participants had many years of teaching experience ranging from 2 to 8 years. data collection semi-structured interviews and classroom observations were used to obtain data. verification of information received during the interviews against the information gathered from the classroom observation was facilitated by using multiple sources. it also enhanced the credibility of the research findings (bertram & christiansen 2016:209). the interview questions comprised open-ended questions that allowed the participants to express their personal opinions and perceptions of what they think the causes of reading problems in their grade 3 classrooms might be (creswell & poth 2016:92). firstly, a pilot study was performed to validate the questions. secondly, we observed the participants in their natural classrooms over a period of 3 weeks with the intention to further explore what the causes of reading problems in the grade 3 classroom might be. according to the authors, some of the main causes of reading problems are phonological awareness, auditory processing difficulties, visual memory difficulties and comprehension of the language (nel, nel & hugo 2016:222–227). an observation schedule was developed, and it included the following key areas: classroom layout, learner teacher support material and classroom practices. another important aspect that we considered during the observation process was the context of the fsss to understand how the context may influence the teachers’ challenges. in this article, the authors report on the research that was conducted in 2019 and thus no other more recent data are available. the research thus involved more than one method and departed from a pragmatic approach. pragmatism is a workable approach as it gives researchers the opportunity to do research in areas that interest them and then they can choose suitable methods (armitage 2007:3). we also considered bronfenbrenner’s ecological systems theory, which acted as a frame of reference and helped us to understand the various systems involved when teachers in grade 3 classrooms in fsss have to teach their learners to read. bronfenbrenner’s ecological systems theory can be used to explain the influence of the environment on a person’s and also on a young learner’s biological, psychological, social and cultural development. the theory analyses the various systems in the environment, which contribute to the forming of the lives and lifestyles of people (cala & soriano 2014:50). the theory refers to the influence of situations to be found on micro, meso, exo and macro levels in a person’s life. when using bronfenbrenner’s theory, the interrelatedness of systems that are involved in an education situation including the teaching of reading in grade 3 classrooms becomes clear. data analysis the raw data collected during the interviews and classroom observation were analysed inductively to identify categories and themes (bertram & christiansen 2016:117). to thematically analyse the data, we adopted the process suggested by creswell (2002 as cited in leedy & ormrod 2005:150), which sees data analysis as a spiral, moving from a narrow perspective to a broad one at the end. we listened to the recorded responses of the participants gathered during the interviews and then transcribed the data. we then reviewed the transcribed data several times until we identified general categories, themes and subthemes. the data collected from the observation were also incorporated and triangulated with the data from the interviews. ethical considerations an ethical clearance letter was obtained from the unisa college of education ethics review committee (no. 2017/05/17/30112508/17/mc) and permission letters were obtained from the gauteng department of education and from the principal of the three identified fsss. the participants were requested to give consent in writing, indicating that they agreed to be interviewed and observed. the parents signed a letter of consent to indicate that they allowed their children to participate in the study and the learners were also asked to give assent. findings the results presented seven specific themes. the first four themes – the language of learning and teaching (lolt) of the schools, learners’ lack of basic reading skills and abilities, teachers’ lack of teaching and facilitating skills to enhance learners’ reading levels, learners’ attitudes towards reading and the lack of parental support – refer to the micro level of bronfenbrenner’s ecological systems theory. other themes arising from the research were fss teachers’ insufficient knowledge to plan and teach learners with diverse learning needs to read, lack of sufficient reading resources and seats and tables and the progression policy of the bw. the participants whose direct quotations are used in this article formed part of a doctoral study. all of them were females and they were professionally trained primary school teachers and learner support teachers with three to 22 years of teaching experience. gr3ct refers to grade 3 class teacher and lst refers to learner support teacher. theme 1: language of learning and teaching nationally, learners who do not speak the lolt of the school seem to be the major challenge for many teachers (needu 2016). in grade 3, learners are expected to be taught in their hl. in the study, eight participants argued that in most cases, the hl of the learners was different from the lolt of the school. this led to many of the grade 3 learners not mastering reading and experiencing reading challenges because they could not understand what they were reading. the following comments support the statement (phala 2019:199, 200): ‘i think the main problem is the language of learning and teaching in this school where i am because learners here are doing english, which is not their mother tongue. so, these learners they don’t know how to read because this language is not the language that they are using at home. they don’t have the basis in this language.’ (lst6, female, primary school teacher) ‘okay, maybe the children at home they speak zulu, shangaan (tsonga) or they speak another language but at school, the mother or usually their parents force it that the children must do sepedi in school. whereby at home they don’t speak sepedi, so this gives us a big problem because when the learner you talk to him, he doesn’t understand you because she doesn’t speak the language. the big problem is the parents force their children to do sepedi home language, but at home, they speak another language.’ (gr3ct1, female, primary school teacher) in addition, another participant (gr3ct4) stressed that what made it even more difficult was the sound system of the different languages. she emphasised that isizulu is more difficult to learn than english and sepedi. if the learner did not have the background, he or she would struggle to know how to read and pronounce words. she (in phala 2019:200) commented that: ‘i think from the isizulu side, the sounds are difficult unlike in english and sepedi. the zulu sounds are difficult because the clicks like they have five letters that form one sound. sounds like “indwa” like if the learners have difficulty with two letter sounds like “hl, sh, ng” when you add three letters on top of the two-letter sound it becomes difficult.’ (gr3ct4, female, primary school teacher) the possible explanation of the reading problems arising from the language used to teach in the classroom was also linked to a lack of phonemic awareness, which is important when learning to read and which could affect the learners’ reading abilities. thirteen participants in the study agreed that there were many learners who did not have the knowledge and understanding of the sound system of the lolt in the schools and the sounds represented by the letters made it difficult for them to read. for the participants, this challenge was also linked to the methodologies that the lower-grade teachers used to teach learners to read. the following excerpts provide evidence of the participants’ concerns (phala 2019:201): ‘… in my class is that the learners don’t know the alphabets, they confuse some of the alphabets. they don’t know the types of phonics, they don’t pronounce phonics, three words together, the vowels together. they cannot pronounce when the vowels are close to each other, when the consonants are together, they are unable to pronounce that.’ (gr3ct2, female, primary school teacher) ‘[a]ccording to me … for grade 3 learners is that educators from grade 1 and grade 2 they did not teach the learners the letter sounds. they taught them the alphabet so the learners they only know the alphabet and not the letter-sound, and when they come to grade 3, it becomes a problem because you have to start with the letter-sound and not the letter, so learners become confused. they are starting to be confused because they cannot differentiate between letter-sound and the alphabet.’ (lst5, female, primary school teacher) in support of what the participants highlighted, we observed the challenges with the letter sounds during the classroom observation process. for example, in school c where english is the lolt, before one participant started with the reading lesson, she asked the learners to read the following words: dog, big umbrella, bunny, little and beautiful from the board and most learners struggled to read the words. in her attempt to support them, she requested them to sound the letters, which was even more difficult. the learners were not acquainted with using letter sounds well and thus some of them confused the letter sounds with the alphabet names such as ‘d-o-g’ as ‘dee-o-gee’ and ‘b-i-g’ as ‘bee-ai-gee’. as a result, when the participant asked them to say the sounds of those letters again, they were frustrated and showed no sign of trying again. theme 2: learners lacking competences in basic reading skills and abilities a number of participants referred to the learners’ lack of competence in the basic reading skills and abilities, which should have been acquired in grades 1 and 2 as another challenge. seven participants indicated that most of the grade 3 learners who experienced reading problems were unable to read at all. six participants highlighted that some learners with reading problems were unable to differentiate between sounds. other challenges that were observed, included the reversal of the letters of the alphabet and the inability to pronounce letters. the following quotations illustrate the reading problems, as indicated by the participants (phala 2019:215): ‘the challenge that i have is that the learners who are struggling [and they] cannot even pronounce or spell the letters.’ (lst2, female, primary school teacher) ‘the challenges are those learners who cannot differentiate “b” and “d” and be thinking that it is the same thing because they confuse the alphabets [alphabet letters] and those learners who cannot say “a” how to pronounce [it].’ (gr3ct, female, primary school teacher) ‘most of them they can’t read because they don’t know the alphabets [alphabet letters]. we have also those who cannot read. they cannot combine the letters to make a word. some learners can’t see that this is a “b” they see it as “p”. i also think the learners who doesn’t [do not] understand the phonics.’ (gr3ct7, female, primary school teacher) the researchers observed that two of the participants referred to ‘alphabets’ when they actually meant ‘letters of the alphabet’. from the quotations, it is evident that many learners were experiencing reading problems and that the members of the teaching staff were aware of some causes of the reading problems as they were able to identify learners who struggled with the reversal of letters and an inability to pronounce words. theme 3: learners’ attitudes towards reading and their willingness to be supported the findings revealed that seven participants were willing to teach the learners who experienced reading problems to read; however, the learners’ attitudes towards reading and their willingness to be supported raised concern. a participant reported (phala 2019:215): ‘from the learners’ side they belittle themselves they feel somehow like we don’t know anything here at school and then they feel like we are giving this teacher a problem then it is okay. if we can just repeat, why do we have to try because we are not able to do what is supposed to be done.’ (gr3ct2, female, primary school teacher) another participant pointed out (phala 2019:216): ‘there are those learners who will never read, who will read no matter how, he or she will never say a word and again. some when they read, they spell, say word for word.’ (gr3ct3, female, primary school teacher) another participant also indicated her frustration and added another opinion. she linked the challenges to the learners’ disability and commented as follows (phala 2019:216): ‘sometimes you have realised that a learner has a reading problem, but it seems as if he or she doesn’t want to be assisted, he or she can sometimes keep quiet and not be interested in the lesson and usually when they read, they encounter problems with phonic problems. you may find that they don’t even recognise the phonics even though you taught them and you repeated them. now and then you found that maybe they were not interested or whatever or maybe they are having hearing problems or whatever.’ (gr3ct5, female, primary school teacher) this participant provided many possible reasons for learners’ reading problems. it became clear that a lack of motivation including motivation from the side of parents is often the reason why children do not want to be supported. teachers could thus play a key role to motivate young learners to improve their reading abilities. the question arises whether the class teachers and lst in the fsss who formed part of the research tried to find the exact reason or reasons for a learner’s reading problems so that these problems could be dealt with. theme 4: lack of parental support and involvement the basis for young learners’ ability to learn to read starts at home. as a result, the teachers need to work together with parents to improve the reading skills of their children. bronfenbrenner’s ecological systems theory acknowledges the interrelatedness of different systems for support to be effective (swart & pettipher 2016:11). taking this into account, it is imperative to involve parents who have to support their children when learning to read to improve the children’s reading skills. from the data collected, three participants viewed a lack of parental support as another cause of reading problems. parents need to encourage their children to read and to develop the culture of reading at home through storytelling. the three participants stated that some of the parents did not help their children with reading at home and the parents also did not read to their children. in addition, some of the learners stayed with their grandmothers who could not read at all. one of the participants who was a learning support teacher expressed her personal experience and related the cause of reading problems to a lack of exposure to printed material and to parents who did not read to their children. she commented that as far as she knew the learners do not get exposure to any form of printing materials such as books and magazines. they tend to watch television or they played games that did not require reading (phala 2019:202). another participant commented (phala 2019:127): ‘my challenge is that parents are not involved when we give learners reading material to go and read at home. they are not helping their children so that is the biggest challenge because if the learner can read here at school and even at home, i think things will be a bit different.’ (lst6, female, primary school teacher) another issue related to the parents and the homes where the learners came from was the fact that some participants did not know the background of their learners. the statement is affirmed by a participant who said that sometimes they did not have the necessary background information about learners. when parents are requested to come to the school, they tend not to come. this meant that these learners could not be supported as the parents who knew a child better did not come to the school (phala 2019:217). this was enhanced by yet another participant who opined that they were failing some of the learners because the parents did not do their part (phala 2019:217). parents and the school are the main role players at the micro level of a child’s life. there should, therefore, be a close relationship between the parents and the school. the lack of a close relationship between the schools and the parents in this study was quite apparent from the participants’ comments. consequently, most of these learners were not motivated to read as they lacked role models in reading. this statement corresponds with the argument by serpell, barker and sonnenschein (2005:4) that the parents’ own literacy habits will influence their children’s interest and motivation to read. alam (2021) who opined that parents’ literacy facilitates the development and establishment of their children’s reading habits. theme 5: full-service school teachers’ insufficient knowledge to plan and teach learners with diverse learning needs to read full-service schools admit learners who require mild-to-moderate levels of support. this calls for teachers to be more knowledgeable on how to plan and teach learners with diverse learning needs in their classrooms. even though some participants acknowledged that they had attended workshops planned by the district officials, they highlighted that their lack of formal training in how to teach reading was not addressed well and this created many challenges for them. hence, there was a plea from the participants for more training, especially on how to deal with learners with diverse reading problems. one lst remarked (phala 2019:170): ‘we need more training on how to support these learners because every year teachers refer learners with different reading barriers and sometimes we are confused of what to do. the district office must supply us with more workshops on [a] continuous basis.’ (lst5, female, primary school teacher) this theme relates to the provincial department of education under whose supervision the various districts reside, and this theme thus also refers to the meso level of bronfenbrenner’s theory. theme 6: lack of sufficient reading resources and seats and tables this theme, as well as the next theme, progression policy of the dbe, relates to the macro level of bronfenbrenner’s theory. according to national education evaluation and development unit (2012:43), the issue of lack of enough learning–teaching support material was raised as an area of concern in south africa. this comment refers to the national system and therefore relates directly to bronfenbrenner’s macro level. from the findings, this issue was also highlighted as a challenge in the research study. two participants commented as follows (phala 2019:330, 327): ‘[w]e make photocopies for stories and then we start reading to the learners and then later the learners will read after us until we realise whether the learner is still struggling or is improving.’ (lts5, female, primary school teacher) ‘i photocopy small letters those small letters – small alphabets.’ (gr3ct2, female, primary school teacher) during the observation, the researchers also observed that not all learners had a reader that caters for their reading needs. in many instances, the teachers relied on photocopied text to be read to the learners. how can a young child learn to read and handle a book without a book? the lack of readers in fsss where young learners with mild learning problems, amongst which are reading problems, have to be assisted, needs to be dealt with at national and provincial levels. it seems that overcrowding and a lack of enough chairs and tables for learners remains a problem in many schools in south africa, and this also needs the attention of the various departments of education. this is especially important in fsss where the classroom and teaching circumstances should be conducive to each learner to make progress at school. in the study, two participants stressed the issue of overcrowding. one participant said (phala 2019:219): ‘but now our classes are full like for now in grade 1 we are having 50 learners and in remedial education, they say if you are having five children who are cognitively challenged they are maybe like ten learners because they count one child times two.’ (gr3ct1, female, primary school teacher) it is not in line with the policies of the dbe to have 50 learners in a class. in south africa, the maximum teacher–learner ratio is 1 teacher to 40 learners (motshekga 2012:2). this is, however, not the norm in all public schools as there are schools where the teacher–learner ratio is less. theme 7: progression policy of the department of basic education three participants expressed their concern regarding the progression policy of the dbe. according to the assessment policy of the dbe, learners are not supposed to repeat twice in a phase. if it happens that a learner is still struggling, he or she will progress to the next grade with support. three participants felt that some learners progressed to grade 3 without being competent in reading. one participant remarked (phala 2019:202): ‘in grade 1 and 2, the learner did not do well, and they push the learner to grade 3. that learner is going to have a problem.’ (gr3ct1, female, primary school teacher) according to the researchers, this could pose a serious problem to a learner’s progress at school, and it could have a snowball effect. it is very difficult for a grade 3 teacher to teach one reader in her class who cannot read as it is not part of the national curriculum to teach beginners reading in grade 3. this is, however, what is expected of grade 3 teachers and lsts in fsss, but it remains a difficult task. more advanced reading skills have to be taught in grade 3 to prepare the learners for grade 4 and beyond. discussion the aim of this article was to understand the challenges experienced by teachers when teaching grade 3 learners who experience reading problems. the understanding was gained by reflecting on grade 3 teachers’ challenges and the possible causes of reading problems of grade 3 learners in fsss. the teachers and lsts who participated in this study viewed the challenges as complex and systemic. the teachers’ insufficient knowledge of different reading strategies limits their chances of addressing reading challenges in schools, especially in fsss where learners with diverse reading needs are to be taught. based on this, some teachers end up using a ‘one-size-fits-all’ approach. this is how they taught reading traditionally, but when this approach is used in schools, and especially in fss, the specific reading needs of all learners are not attended to. the teachers’ attitude to teach reading is influenced by their attitude towards reading and reading methods. without relevant reading resources, such as graded reading books, challenges are created for teaching reading in fsss. schools should provide learners with enough and a variety of reading materials, and the provision should be made for the various reading levels of learners. where possible it could be considered to assist learners especially those with reading challenges with well-designed computer-based reading support. if reading support is not provided, it could have a negative influence of the teaching of reading. overcrowding also poses a huge challenge for teachers. if classes are overcrowded, the teachers are unable to attend to each child individually; hence, a one-size-fits-all approach is adopted by most teachers. this is especially unacceptable in fsss where learners with moderate barriers such as reading problems should be supported. the progression policy is deemed to aggravate the situation. when learners are not competent and they are progressed to the next grade, the next teacher faces challenges to teach these learners. the lack of parental involvement creates a challenge for the extension of knowledge between the school and the home. if learners are only taught to read at school and not supported with their reading at home, it creates a gap, and this, in turn, reduces the learners’ chances to learn to read, using different environments and contexts. when taking a closer look at the participants’ responses, we conclude that teachers’ challenges are complex and thought provoking and could be explained from different contexts or systems. the different contexts include the home, the school and the government departments. the interrelatedness of the various systems in the education structure shows how different factors from different contexts are closely connected and could contribute towards the reading ability or inability of learners to make progress at school. the interrelatedness is evident when one considers bronfenbrenner’s theory. this theory states that the way in which a child develops is influenced by the collaboration of the various systems in which he or she lives (donald, lazarus & lolwana 2006:41–42). within the context of this study, the factors in bronfenbrenner’s micro system could be aligned as follows: lolt; learners lacking competences in the basic reading skills; learners’ attitudes towards reading and their willingness to be supported; teachers’ insufficient knowledge to plan and teach diverse learners to read in fsss and the lack of parental support and involvement. the teachers’ and lsts’ need to be trained more to teach reading by the various district offices relates to the meso level of bronfenbrenner’s theory. when grade 2 learners are progressed to grade 3 and they do not have the required reading competency, this is an issue at bronfenbrenner’s macro system where the government operates. the issue of a lack of enough readers and overcrowding is also related to the macro system. conclusion the causes of the reading problems discussed in this article are to be found on more than one level of bronfenbrenner’s systems theory. it became evident from the research that the classroom teachers and the lst are not the only ones to be blamed for the reading problems that a group of learners in fsss experienced but that the reasons were to be found at many levels in the education structure. it is important that the reading problems and the difficulties that grade 3 teachers face to teach reading should be seen as part of a big system, and it requires that all subsystems work together to deal with the problems and difficulties. it is evident that the reasons why learners in the fsss, which formed part of this research project, have reading problems call for an investigation of all the systems involved in the education structure. we therefore conclude that the causes for reading challenges are systemic and that all the different stakeholders in the various systems involved in the teaching–learning situation in schools should be involved when attending to such challenges. it is hoped that grade 3 learners with reading problems would not be stigmatised and left behind but that they would be supported by their teachers and other staff members to overcome their reading problems so that they could make a success of the years that they spend at school. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.a.p. was the project leader and a.j.h. made conceptual contributions. the manuscript was written by both t.a.p. and a.j.h. funding information this research received no specific grant from any 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the baltimore early childhood project, cambridge university press, cambridge. spaull, n., 2017, learning to read and reading to learn, stellenbosch policy brief no. 04/2016, viewed 05 november 2021, from https://resep.sun.ac.za/wp-content/uploads/2017/10/resep-policy-briefs_nic_spaull-email.pdf. swart, e. & pettipher, r., 2016, ‘framework for understanding inclusion’, in e. landsberg, d. kruger & n. nel (eds.), addressing barriers to learning, pp. 3–31, van schaik, pretoria. van bergen, e., van zuijen, t., bishop, d. & de jong, p.f., 2016, ‘why are home literacy environment and children’s reading skills associated? what parental skills reveal’, reading research quarterly 52(2), 147–160. abstract introduction research methodology and design presentation and discussion of findings conclusion acknowledgements references about the author(s) daniel o. ashipala department of general nursing science, school of nursing and public health, faculty of health sciences and veterinary medicine, university of namibia, rundu, namibia lettie langendorf department of general nursing science, school of nursing and public health, faculty of health sciences and veterinary medicine, university of namibia, rundu, namibia citation ashipala, d.o. & langendorf, l., 2022, ‘experiences of spinal cord injury patients admitted to the rehabilitation unit at the national referral hospital in khomas region, namibia’, african journal of disability 11(0), a1018. https://doi.org/10.4102/ajod.v11i0.1018 original research experiences of spinal cord injury patients admitted to the rehabilitation unit at the national referral hospital in khomas region, namibia daniel o. ashipala, lettie langendorf received: 10 feb. 2022; accepted: 23 apr. 2022; published: 27 july 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: spinal cord injury (sci) remains one of the major causes of disability globally. it results in permanent physical disability secondary to devastating neurological defects. when a person sustains sci, substantial changes and challenges in their lives occur, regardless of their age or socioeconomic status. in namibia, the knowledge on sci experiences could be used to improve the care rendered to patients with this injury. objectives: the purpose of this study was to explore and describe the experiences of patients with scis admitted to the rehabilitation unit at the national referral hospital in khomas region, namibia. method: a qualitative, explorative and descriptive study design was used. data were collected by means of in-depth, semi-structured, face-to-face interviews with 15 participants from the rehabilitation unit. data were analyzed using thematic analysis. results: analysis of the data in this study identified three themes: negative experiences, positive experiences and measures to improve the lives of people living with sci in the community. participants experienced varied emotions from anger, stress, disbelief, frustration and sadness, which led to depression. in addition, participants experienced discrimination due to lack of community acceptance hence, improving awareness remains key. conclusion: this study provided insight into the lived experiences of those living with sci as they narrated their struggle from the onset of sci to their reintegration into the community. the study’s findings can be used to develop self-care strategies and ongoing interventions that focus on maintaining physical and psychological health for spinal-cord injured persons throughout the course of living with disability. keywords: spinal cord injury; rehabilitation; challenges; lived experiences; patients; re-integration. introduction spinal cord injury (sci) is a devastating, life-threatening condition that affects every aspect of life, including the physical, social and psychological health of the affected people. the world health organization (who) (world health organization 2013) reported that around 500 000 people sustain an sci each year, and these people are two to five times more likely to die prematurely, with the worst survival rates in low-income and middle-income countries. in addition, the who reported that men are most at risk of sci between the ages of 20 and 29 years and 70 years and older, whilst women are most at risk between the ages of 15 and 19 years and 60 years and older. furthermore, the who also reported that 90% of causes of sci are because of trauma such as road traffic accidents, falls and violence. road traffic injuries place a burden on global and national economies and household finances. the namibia statistics agency (2016) further reported that many families are driven into poverty by the loss of income and the added burden of caring for the family members who become disabled because of such injuries. the new era (2014) reported that according to the who, namibia is ranked first in the world in terms of the number of road deaths per 100 000 residents. although africa accounts for just 2% of registered vehicles, the continent is responsible for about 16% of annual global road deaths. the new era (2014) further reported that a recent study on mortality from road crashes in 193 countries by schoettle and sivak (2014), from the university of michigan transportation research institute, indicated that in namibia, about 53% of the population are more likely to die in a vehicle collision than from cancer or other diseases. according to the namibia statistics agency (2016), in 2018 the road network comprised 45 387 km, of which approximately 14% was tarred. the 2016/2017 report of the motor vehicle accident (mva) fund of namibia indicates that 3044 people were injured in 1772 car crashes on national roads across the country. the report further reveals 528 road crashes and 965 injuries for the festive season during that period, indicating a reduction from the 645 crashes (18%), 1292 injuries (25%) and fatalities (5%) recorded during the 2016/2017 festive season from the previous year. records at the national referral hospital rehabilitation unit at the windhoek central hospital in khomas region indicate that the most common causes of sci are mvas, which account for almost 18%. about 13% result from acts of violence, commonly knife and gunshot wounds (hedimbi, amakali-nauiseb & niikondo 2019). statistically, chatukuta (2020) observed that 60% of scis result from recreational activities, such as diving into shallow water, as well as cultural and traditional sports activities; 1% results from falls, mostly by senior citizens from the age of 65 and above. the researcher consequently considered it imperative to study the lived experiences of people with scis at the national referral hospital, as this is the primary care facility for those with traumatic spinal cord injury (tsci) in namibia. although many studies have been conducted on sci, most of these focused on the availability of wheelchairs, accessibility to primary healthcare and the psychological effects of patients with sci (paulus-mokgachane, visagie & mji 2019; pefile, mothabeng & naidoo 2019; sefotho, jabulani mpofu & maree 2017; visagie, duffield & unger 2015; visagie et al. 2015). in namibia, the disability resource centre offers vocational trainings to people with disabilities and provides peer and entrepreneurial support to those who want to start their own business (shumba & moodley 2018). in namibia, the national disability council is the custodian in enforcing the disability act, 2004. the national disability council advocate for the rights of people with disability in namibia as provided for in the disability act, 2007 according to chichaya, joubert and mccoll (2018). as such, additional research in the namibian context is necessary to explore the experience of patients with sci. whilst literature on the experience of with sci has increased globally, this has not been the case in namibia. studies exploring the in-depth experiences of patients with sci are necessary in order to devise coping strategies that can mitigate these challenges. this study is amongst few that examine the experiences of patients with sci. in addition, this research sought to understand the experiences of patients with sci. researching these experiences could contribute to the development of self-care strategies and ongoing interventions that focus on maintaining physical and psychological health for both spinal cord injured persons and their family members throughout the course of living with the disability. research question what are the experiences of patients with sci admitted to the rehabilitation unit at the national referral hospital in khomas region, namibia? research aim the aim of this study was to explore and describe the experiences with sci admitted to the rehabilitation unit at the national referral hospital in khomas region, namibia. research methodology and design the study used a qualitative, exploratory and descriptive design. according to hennink, hutter and bailey (2020), qualitative studies focus on the meaning and understanding of experiences as lived by participants. an explorative research design involves the identification of problems within a certain practice and justification of that practice (flick 2018). the inquiry process involved the researchers conducting the study in a natural setting and developing a complex holistic picture, as well as analysing and reporting the detailed views of the participants (cardano 2020). this study focuses on the meaning and understanding of experiences as the participants experienced them. the goal of qualitative research is to understand rather than explain or predict (mohajan 2018). semistructured individual interviews were conducted to enable the researchers to understand the participants’ experiences. setting the study was conducted at a national referral hospital in khomas region, namibia. the sci rehabilitation unit, spinalis, which opened in 2013, is the country’s first sci unit. after patients are discharged from the general ward, they are referred to the rehabilitation unit, which receives referrals from all 14 regions. the rehabilitation programme ranges between 8 and 12 weeks depending on the type of injury. between 2016 and 2018, the eight-bed rehabilitation unit recorded an admission of 147 with disability resulting from tsci. the training provided during rehabilitation comprises basic but complex aspects that facilitate physical therapy, skill-building activities and counselling to provide social and emotional support, as well as to increase the quality of life for everyone. the programme promotes maximising the level of independence before returning patients to their previous social and working conditions. the unit consists of a comprehensive rehabilitation team of multidisciplinary health professionals, consisting of doctors and nurses, an occupational therapist, a physiotherapist, a social worker and a rehabilitation coach. population and sample the population of this study comprised 20 patients with tsci at the national referral hospital. the researcher conveniently selected 15 patients from the population of 20 patients who have completed their rehabilitation programme, who came for follow-up during august and september 2020. inclusion criteria included patients with sci who were willing to participate by signing an informed consent, with the ability to communicate verbally, who were over the age of 18 years and had completed the rehabilitation programme. the researcher kept a reflexive journal of all the information obtained from the beginning of the study, including personal reflections in relation to the study. the only data that the researcher used was from audio recordings, transcripts and field notes in the analysis and did not add any other information not provided by the participants. the independent coder was given the researcher’s reflexive diary, which was kept throughout the research process and contained all field notes, including intuitive notes that assisted in bracketing. data collection in this study, data were collected during august and september 2020 after approval had been granted by the school of nursing ethics review committee and the ministry of health and social services institutional review board. the semistructured interviews were conducted by the same interviewer for all patients in accordance with an interview guide, which was developed based on the research question and the literature review. the interviews were conducted in order to capture the participants’ experiences pertaining to living with sci. the interview guide comprised the following sections: section a and section b. section a requested sociodemographic information from the participants to contextualise the research findings in line with their background information. section b consisted of two questions. the first question was about the lived experience after sustaining an sci, followed by probing questions. the second question was about what could be done to improve the life of a person living with an sci. data saturation was reached at 15 participants and no further interviews were conducted. each interview lasted between 30 min and 34 min. the following interview questions were posed: what are your experiences as a patient with an sci admitted to the rehabilitation unit at the national referral hospital in khomas region, namibia? what can be done to improve the lives of patients living with sci who are admitted to the rehabilitation unit at the national referral hospital in khomas region, namibia? data analysis data from the audio recordings were transcribed verbatim before being analysed using qualitative thematic analysis (braun et al. 2018). the transcripts and narratives were thematically analysed following braun’s six-step method of data analysis, which included: (1) organising and preparation of data, (2) developing a sense of all the data, (3) coding data following tesch’s nine steps, (4) identifying and describing themes, (5) representing the findings and (6) interpreting the data (braun et al. 2018). the researchers and the independent coder then held a consensus discussion and agreed on the main themes and subthemes that emerged. the analysed data were presented using the main research questions and objectives as the key themes. measures to ensure trustworthiness trustworthiness in this study was ensured through the application of the credibility, transferability, dependability and conformability criteria proposed by kyngäs, kääriäinen and elo (2020). credibility in this study was assured during the two months that the researcher spent with the participants until data saturation was reached, thus gaining an in-depth understanding of the phenomenon. prior to the actual data collection, testing of the interview guide was conducted on three participants who were also part of the study; however, no changes were made to the interview guide. the researcher has ensured transferability through a thick description of the data collection process, using verbatim transcriptions of the voice recordings and field notes. dependability was facilitated by means of literature control and prolonged engagement (nguyen et al. 2021). confirmability was assured by recording the interview to ensure as far as possible that the study findings were the results of the respondents’ experiences and ideas. this study used an independent coder to confirm the data collected via the interview guide, which in turn were confirmed by the researchers to make sure that the data were accurate and in line with the information provided by the participants. ethical considerations the research was conducted after approval was granted by the school of nursing research and ethics committee of the faculty of health sciences, university of namibia, namibia (reference no. sonrec 47/2020), whilst permission to conduct the study and access participants was obtained from the research committee of the ministry of health and social services (reference number ll2020). participants’ right to privacy, the right to anonymity and confidentiality, the right to fair treatment and the right to protection from discomfort and harm were considered throughout the process (hays & mckibben 2021). informed consent was sought verbally from the participating respondents and through their signing of a consent form, as well as permission to collect field notes and to use an audio recorder, was obtained from the participants. participation in the study was entirely voluntary and participants had the right to withdraw at any given time without any penalties. interviews were conducted in an office in the unit to ensure privacy. data were kept in a computer encrypted with a password known only to the researchers. furthermore, only those questions relevant to the aims and objectives of the study were asked. instead of names, numbers were used during the interviews to prevent the linking of data with participants’ identities. participants’ demographical data the participants in this study comprised 15 adults (10 males and 5 females) aged between 20 and 59 years, all of whom had complete sci resulting in disability (i.e. four quadriplegics and 11 paraplegics). six of the participants were married, five were cohabiting and four were single. nine participants had children. all participants had formal education and the majority had tertiary education. the main source of income for nine of the participants was from a social grant, whilst six were employed prior to the injury. the sociodemographic data of the participants are given in table 1. table 1: characteristics of participants. presentation and discussion of findings the themes that emerged from the data analysis are indicated in table 2 as follows: (1) negative experiences, (2) positive experiences and (3) measures to improve the lives of people living with sci in the community. table 2: summary of findings. theme 1: negative experiences this theme is a description of the participants’ experiences regarding living with sci. the following subthemes were identified for this theme: (1) limited accessibility, (2) emotional stress leading to depression, (3) societal discrimination against wheelchair users and (4) society feeling pity. subtheme 1: limited accessibility limited accessibility was an issue expressed by all participants. following rehabilitation, some patients became independent, but the issue of accessibility became the new reality for most, starting with the limited access to buildings and modes of transport such as taxis and buses, which did not accommodate them. although they could afford the fares, they still could not access this type of transport. problems of access were expressed as follows by a number of the participants: ‘having to go to a place that isn’t accessible really breaks me down, or even going to family functions where i don’t have access to enter, i end up feeling like i am a burden because now they have to spend time trying to accommodate you.’ (p7, 28 year old, male) ‘people do not consider the problems of wheelchair users. you will find that the bathroom stalls are too small for my wheelchair to enter, and this is an issue also for many other places, such as lodges, restaurants, offices etc. they are really not wheelchair friendly.’ (p3, 20 year old, female) mobility is perceived as one of the most restricted domains of social participation following an sci. the lack of appropriate access to buildings and transport remains an almost unbearable experience. these results correspond with the work of sale et al. (2016) who found that the dependency of people with an sci on other people devalues their existence as human beings, leading to a lack of personal privacy, which really defines the personhood of human beings. subtheme 2: emotional stress leading to depression the participants expressed disbelief at what had happened to them, stating that their grief was not only about the physical loss caused by the sci, but that it also had an emotional aspect that contributed to the depression they experienced. grieving for the loss of personal control and independence after sci led to depression, a negative psychological state in which participants went through a deep sadness, apathy and lethargy of emotions in relation to the sci, resulting in profound feelings of anger, injustice and unfairness. some of the participants had this to say: ‘after i was told by the doctor that i would never walk again, all sorts of things went through my mind; i even thought of killing myself, because i thought my life would be meaningless.’ (p10, 40 year old, male) ‘i was really sad and went into depression; i cried a lot, and i kept my feelings to myself because i thought no one would understand what i am going through. i hated my wheelchair and i thought dying would be a better option.’ (p1, 22 year old, female) the findings of this study support those of hatefi et al. (2019), who found that emotional stress for people who have experienced injuries is common. these findings are also supported by torabian, sabet and meschi (2019), who observed that patients who have sustained an sci often become emotionally weak and have traumatic depression, leading to suicidal thoughts if not managed properly in the rehabilitation process. mcdonald, pugh jr and mickens (2020) again confirmed that people with scis are at increased risk of developing major depressive disorder, as well as other negative psychological effects during the rehabilitation phase or after returning to live in the community. subtheme 3: society discriminates against wheelchair users societal discrimination against people with sci has a detrimental effect on the achievement of holistic rehabilitation (kisala et al. 2015). some of the participants mentioned that although they were dealing with this unfortunate situation, one of the factors that made their life more miserable was the reaction from society, which made it even more difficult to reintegrate into the community. this is evidenced by the following responses: ‘i got very emotional, especially after i lost my friends; there were those who believed i could not socialise with them the way i used to; they would call me boring, and this really got to me.’ (p15, 47 year old, male) ‘society treats you as if you are unable to do anything; they do not respect you and see you as nothing, don’t allow to participate in decision-making and they would not want you to represent the community.’ (p15, 47 year old, male) these findings are echoed by russell et al. (2021), who found that lack of physical ability to perform routine duties generally has a detrimental effect on the socialisation process of those who have sustained an sci. other studies, such as mcdonald et al. (2018), had shown that when victims of sci realise that they can no longer perform as they used to, as a result of the reception they receive from society, they may remove themselves from society. subtheme 4: society feeling pity participants indicated how much they had been the object of society’s pity and indicated that this pity disrupted their reintegration into the community: ‘when my friends came to visit me and start to cry for my sorry state, some kept their distance because they were not used to seeing someone suffer from sci’. (p9, 35 year old, male) ‘the look of pity in people’s eyes made me not want to be outside, because i did not like the feeling of pity towards me.’ (p6, 40 year old, male) these findings are supported by burkhart, skemp and siddiqui (2021), who stated that social constructs of disability, even if in the form of positive philanthropy, affect the disabled person as they view themselves as being more than just disabled. theme 2: positive experience this theme focuses on the positive experiences of those living with an sci. based on the data collected, the following subthemes were generated: availability of technical aid and assistive devices; gaining knowledge on self-grooming and self-care activities; family equipped with knowledge of care for rehabilitation. subtheme 1: availability of technical aid and assistive devices the availability of specialised sci management and the provision of technical aids are considered as necessary to help patients with sci adapting to their new lifestyle. accordingly, some of the participants had this to say: ‘there are more advanced techniques to do things differently than before, so i think that it also helps me a lot.’ (p11, 45 year old, male) ‘i go where i want to go with the help of my wheelchair, because they are now my legs, and i am grateful that i can drive myself.’ (p4, 49 year old, male) these findings are supported by yoo et al. (2019), who maintained that assistive devices are important not only in moving patients with sci around, but also for routine self-care and personal tasks such as eating and bowel and bladder management. these findings are supported by manns, hurd and yang (2019), who found that with modern technology, it is becoming easier for people with disabilities to improve their performance of certain activities, routines and socialisation. subtheme 2: gaining knowledge of self-grooming and self-care activities learning appropriate techniques for self-care is important and an explicit goal of sci rehabilitation. accordingly, a common response from all the participants was that after undergoing rehabilitation, they had gained functional independence at the level of their ability: ‘i saw that there are things one can do without being dependent. i can now drive also, which [is] something i couldn’t do in the beginning, and i never thought it would be something possible.’ (p4, 49 year old, male) ‘i am trained to become independent to the level of my ability, for example, how to bath[e], how to transfer self from a wheelchair to any other place.’ (p7, 28 year old, female) a study by mir et al. (2019) confirmed that rehabilitation is the strongest weapon to counter the internal and external challenges facing people with disabilities. the inability to perform an everyday task can lead to a loss of self-worth; hence, rehabilitation is often described as promoting inner strength. it has been observed in the findings of this study that despite the adverse consequences of sci, patients still experienced some positives in adjusting to their new lives. this finding is supported by qasheesh et al. (2021), who found that rehabilitation after scis helps to improve the adaptability and adjustment of patients with such injuries. subtheme 3: family equipped with knowledge of care for rehabilitation support on the part of family and friends has an influence on the building of a strong self. their involvement has a positive effect on the recovery of a person with an sci, as is indicated by the participants’ responses: ‘because my wife received caregiver training, she has always been very supportive, and my family is always around to assist.’ (p12, 50 year old, male) ‘my injury has left me not be able to control my bladder and bowel; my wife and my two daughters are sharing the responsibilities to care for me.’ (p5, 58 year old, male) a study by conti et al. (2020) confirmed that families are the determinant factors that shape a continuous rehabilitation process. similarly, mcdaid et al. (2019) observed that families are the primary aspect of therapy, therefore equipping them with information is necessary to help people with sci to adjust to a new life. theme 3: measures to improve the lives of people living with spinal cord injury in the community this theme is a description of what participants mentioned when they were asked to suggest actions to be completed in the future that are required to improve the lives of people with sci in the community. the subthemes in this theme are as follows: outreach programmes for sci awareness, peer support groups for support and motivation, rehabilitation services to be decentralised to the regions and promotion of the rights of people with disabilities. subtheme 1: outreach programmes for spinal cord injury awareness participants expressed the need for outreach programmes to create awareness of sci in the community. such programmes provide specialist knowledge, advice, early intervention and education for patients with scis, their families and the community. participants had the following to say on this topic: ‘to create awareness in the community, for those who have no knowledge about people living with disabilities, and to encourage people with disabilities to be more active and socialise more.’ (p5, 58 year old, male) ‘more outreach programmes to create awareness on sci and break the chain of stigmas about those with spinal cord injuries.’ (p3, 20 year old, female) mobile teams could play an important role in providing adequate follow-up and maintaining long-term health (divanoglou et al. 2018). merritt et al. (2019) described an attempt to reach people in rural villages in india, which they called paraplegia safari, as having a positive effect. subtheme 2: peer support group for support and motivation participants reported that peer support groups are an important aspect, helping them through the recovery process. peer mentors and support groups provide a picture of what is possible and in such groups helpful tips gained from experience are shared. the following responses were observed from the participants: ‘i know a few wheelchair users who had their accident way before me and had experienced way more than me, so when i need help or advice, i will go to them. peer group is very important, and it has helped me so much.’ (p14, 32 year old, male) ‘forming a group like an association where people with spinal cord injuries can come together to motivate and support each other to reach better outcomes in their lives.’ (p7, 28 year old, female) these findings are supported by those of ronca et al. (2020), who indicated that peer support groups help raise awareness of sci programmes. if such programmes were intensified, those with peer support would see more improvement in their depression and patients with sci would accept their disability, take better care of themselves and feel more satisfied, in control and optimistic. subtheme 3: rehabilitation services to be decentralised to the regions the participants highlighted the need for rehabilitation services in the regions. these specialised services are crucial for reducing the possible complications that may arise. participants had this to say: ‘more wards such as spinalis (7west) should be created countrywide for rehabilitation, because without rehabilitation, people with sci become burdens.’ (p6, 40 year old, male) ‘they do not have a centre for rehabilitation, a place where those with sci can come together and socialise with each other, exercise with other people with sci. so if the rehabilitation centre can be properly decentralised to towns, it would make life easier for people to learn about the issues those with sci have.’ (p4, 49 years old, male) the findings have shown that participation in rehabilitation enhances the likelihood of improving quality of life after an sci. these findings are supported by those of merritt et al. (2019), which show that people with scis need special services to facilitate their participation in the community and to improve their quality of life. subtheme 4: promotion of the rights of people with disabilities the participants mentioned that it serves no purpose to have good policies on paper; if they are not implemented, they will have no benefit for society. the constraints experienced by the participants are a result of a lack of services and policies that facilitate a successful outcome and reintegration into society for people with scis. the participants had this to say in this regard: ‘namibia has signed the un convention, and there are a lot of rights for people with disabilities.’ (p10, 40 year old, male) ‘i think if we can just start by addressing each right at a time and implementing them.’ (p8, 25, female) the promotion of the rights of people with disabilities would give equal rights to those with scis to live in the community, also giving them choices equal to those of others. the improved survival rate and increased life expectancy amongst people with scis mean that they will live with the disability for relatively longer periods, giving rise to new problems and responsibilities that can negatively impact their lives (houlihan et al. 2016). limitations and areas for further research this study only explored the lived experiences of people with tsci at a national referral hospital who had undergone rehabilitation. in addition, the mixed role of the researcher (as both a clinician and as someone with whom the participants were familiar) assisted in building trust and making them feel comfortable. however, this familiarity could be seen as a limitation if the participants in any way felt obliged to participate or give answers to please the researcher or to answer in an expected way. the researcher kept a reflexive journal of all the information obtained from the beginning of the study, including personal reflections in relation to the study. the only data that the researcher used was from audio tapes, transcripts and field notes in the analysis and did not add any other information not provided by the participants. although the findings cannot be generalised, there are still areas that require further study; for example, further research is required for an inferential study to measure the impact of psychological challenges on the lifespan of people with scis or a study to measure the impact of rehabilitation centres in countering challenges faced by people with scis. in addition, the impact of an sci on the life of the primary family caregiver should be explored. recommendations the recommendations are based on the literature and the findings of this study. accordingly, the researcher recommends the following: outreach programmes for sci awareness are needed. there is a need to engage in more outreach programmes to create awareness of sci and break the stigmas attached to disability. outreach programmes will support patients discharged from the hospital following an sci, thus assisting to ensure a smooth transition into the community. peer support groups for support and motivation are needed to train the newly affected patients with scis. peer support plays an important role in supplementing the information provided by the multidisciplinary rehabilitation team. role-modelling particularly helps those who may find it challenging to discuss their conditions. rehabilitation services should be decentralised to the regions, as patients with scis experience challenges related to a lack of specialised services in the various regions after being discharged from rehabilitation. the concept of rehabilitation is relatively new in namibia, therefore having decentralised rehabilitation services would be in line with the national health policy framework (2010 – 2020). this policy serves as a fundamental principle for providing public health services to the population with the intention of giving access to a range of effective public health interventions. promotion of the rights of people with disabilities needs to be made a priority in order to increase knowledge on disability rights amongst the citizens of namibia, because the namibian constitution guarantees the right to full and equal participation for all its citizens, including men, women and children with disabilities. further research is required for an inferential study to measure the impact of psychological challenges on the lifespan of people with scis or a study to measure the impact of rehabilitation centres in countering challenges facing people with scis. in addition, the impact of an sci on the life of the primary family caregiver should be explored. conclusion the purpose of this study was to explore and describe the lived experiences of people with scis at a national referral hospital in khomas region, namibia. this study provided an insight into the lived experiences of people with scis at the national referral hospital. it is worth noting that the participants indicated that they had both negative and positive experiences. participants experienced varied emotions ranging from anger, stress, disbelief, frustration and sadness, which eventually led to depression. the study also highlighted the discrimination resulting from the failure on the part of society to accept and see people with disability as merely people with different abilities; hence, a need to improve awareness of sci is much needed. positive experiences, as highlighted by the participants, include the family being equipped with knowledge of care for rehabilitation, as well as family involvement. in addition, key rehabilitation factors that were highlighted in this study included the commitment of the family members of those with sci and their role in ensuring constant care, especially for those with more debilitating injuries. the availability of technical aids and assistive devices plays a major role in helping those with sci reintegrate into society, and these are especially important in giving them a sense of independence, helping them to gain knowledge on self-grooming and self-care activities. acknowledgements the authors wish to thank the research participants who accepted to be part of this research endeavour. without their participation, this study would not have been possible. the authors would also like to thank the university of namibia ethics review committee and the ministry of health and social services research unit for granting us permission to conduct this study. competing interests the authors declare no potential conflict of interest. authors’ contribution d.o.a. was involved in conceptualisation, methodology, writing the original draft, review and editing, visualisation, project administration and supervision. l.l. was involved in conceptualisation, methodology, writing the original draft and formal analysis. both authors approved the final version for publication. funding information this research 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(2013). international perspective on spinal cord injury. geneva, switzerland. yoo, h.-j., lee, s., kim, j., park, c. & lee, b., 2019, ‘development of 3d-printed myoelectric hand orthosis for patients with spinal cord injury’, journal of neuroengineering and rehabilitation 16(1), 1–14. https://doi.org/10.1186/s12984-019-0633-6 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) jacomina m.c. motitswe department of inclusive education, college of education, university of south africa, pretoria, south africa citation motitswe, j.m.c., 2025, ‘teachers’ perceptions on including learners with barriers to learning in south african inclusive education system’, african journal of disability 14(0), a1543. https://doi.org/10.4102/ajod.v14i0.1543 original research teachers’ perceptions on including learners with barriers to learning in south african inclusive education system jacomina m.c. motitswe received: 28 july 2024; accepted: 17 feb. 2025; published: 31 may 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: inclusive education acknowledges that all children can learn, but requires support. however, addressing learning barriers and responding to diverse needs remains a challenge in some south african schools, leading to the exclusion of some learners. objectives: this study explored teachers’ perceptions of including learners who experience barriers to learning and responding to their diverse learning needs. method: a qualitative case study was conducted using purposive sampling to select six schools across two geographical contexts within one district in the north west province, south africa. focus groups were conducted with six school-based support teams (three to five members each), and semi-structured interviews were conducted with six school principals. results: teachers expressed concerns about inadequate and limited training in inclusive education, which contributes to persistent negative attitudes. the continued application of the medical model still prevailed. systemic challenges such as overcrowded classrooms, limited teaching and learning time, insufficient policy guidance, and inadequate support from district-based support teams were also highlighted. conclusion: teachers’ reluctance to implement inclusive education policies may be linked to perceptions of inadequate training and lack of resources to address diverse learner needs. many teachers still follow the medical model rather than an inclusive approach to equitable education. a shift towards inclusive practices requires regular review and support to prevent learner exclusion. contribution: the study contributes to policy and practice by advocating for ongoing review and enhancement of inclusive education strategies and pedagogies. keywords: barriers to learning; diverse learning needs; exclusion; inclusive education; participation. introduction while inclusive education (ie) is globally embraced as a pathway to respond to the plea for equal education for all learners, especially those who experience barriers to learning, it is not yet in practice in some schools in south africa (engelbrecht 2020; engelbrecht et al. 2015; majoko et al. 2018). in principle, ie has much to offer in the sense that it focuses on maximising the participation of all learners in the cultures and curricula of educational institutions and, subsequently, minimising barriers to learning and development. moreover, ie responds to the objective of the education system with regards to ensuring quality education for all learners, which would provide them with opportunities for lifelong learning, entering the world of work and ensuring meaningful participation in society as productive citizens (engelbrecht 2020). inclusion in education is about ensuring that every learner feels valued and respected and can enjoy a clear sense of belonging (schuelka 2018). in south africa, the implementation of ie has been a central focus following the salamanca statement and the subsequent policies that advocate for the inclusion of learners with diverse needs in public ordinary schools (engelbrecht 2020; engelbrecht & muthukrishna 2019). south africa’s commitment to ie was formalised with the establishment of the education white paper 6 (ewp 6): special needs education-building and inclusive education and training system in 2001, which laid the foundation for the transformation of the educational system to accommodate all learners (department of education [doe] 2001; engelbrecht & muthukrishna 2019). many african countries have been devoted to the implementation of ie, with the aim of achieving education for all by addressing the issue of diversity and equality (kinuthia 2022). in a south african context, much has been done regarding the development of material for learning and teaching support, curriculum development, human resources and the screening, identification, assessment, and support (sias) strategies (department of basic education [dbe] 2014; engelbrecht 2020). it, however, remains critical to determine whether policy has been translated into action and, if so, to what extent this has been done. in undertaking our study, the authors assumed that many teachers have continued to implement ie policy in ways other than what was envisioned when publishing ewp 6 (doe 2001). the mismatch between policy as it was intended and how it is implemented in practice may be based on teachers’ limited understanding of the policy and the context in which they find themselves (kinuthia 2022). furthermore, we concur with the findings of engelbrecht (2020), kinuthia (2022) and singal and muthukrishna (2014) that the challenges associated with the implementation of ie may be caused by the discrepancies in the cultural, social, financial and historical background of the education system. for example, in south africa, the discrepancies include financial constraints that affect the availability of resources, attitudinal barriers caused by a lack of cultural acceptance of learners who experience diverse educational needs, and the beliefs and practices of teachers who believe in traditional teaching methods that are not conducive to inclusivity (engelbrecht & muthukrishna 2019; singal & muthukrishna 2014). inclusive education policies advocate for the full participation of learners with diverse educational needs. however, the reality on the ground often contradicts these ideals. many learners who experience barriers to learning face systemic exclusion because of factors such as inadequate teacher training, limited resources and a lack of institutional support (mpu & adu 2021). as key implementers of ie, teachers play a vital role in promoting or hindering the inclusion process. while there is extensive research on implementing ie in south africa, there is a lack of literature specifically addressing teachers’ perceptions in the north west province regarding the inclusion of learners who experience barriers to learning and how to meet their diverse learning needs. understanding their perceptions and experiences is essential to identifying the barriers that perpetuate exclusion within an ie system and developing practical interventions to address them. our study thus focused on the following two questions: what are the teachers’ perceptions of including learners who experience barriers to learning? what do teachers do to ensure that inclusivity in education is implemented? research methods and design a qualitative multiple-case study approach was employed in our study to explore teachers’ perceptions of the inclusion of learners with barriers to learning. a multiple case study design was adopted, aligning with yin’s (2017) characterisation of multiple case studies as investigations involving two or more cases with both shared and distinct characteristics. furthermore, merriam and tisdell (2016) highlight that a multiple case study approach explores real-life, bounded systems by engaging in comprehensive and detailed data collection from various sources. this design was selected to explore teachers’ experiences and perspectives on the inclusion of learners with barriers to learning, providing insights from a range of educational contexts. sampling our study was undertaken in the bojanala district in the north west province, south africa. the north west province was one of four provinces that participated in a study by the danish international development agency (danida) that was funded to expand ie programmes; the bojanala district was part of the pilot study (doe 2002). the report indicates that most teachers from the bojanala district were funded to further their studies in ie in collaboration with wits university (johannesburg), the university of north-west (potchefstroom) and the catholic institute of education (johannesburg) (doe 2002). for the purposes of our study, further information and advice were sought from the bojanala dbst regarding the selection of schools. purposive sampling was found to be appropriate (yin 2017). six schools were selected: two mainstream primary, two full-service and two special schools. one full-service school, which was the first school to be selected as a full-service school to pilot the implementation of ie was selected because the authors assumed that the teachers at the school were already familiar with inclusive practices and knew the gaps or challenges. one special school that was selected was the first to be converted into a special school as a resource centre in the bojanala district. the two mainstream schools were selected because some of the teachers were funded by danida during the pilot project. all the schools selected were situated in two different geographical contexts (madibeng and rustenburg circuits; see table 1). table 1: description of schools. data collection methods two data collection methods were used, namely focus group discussions with school-based support teams (n = 6 groups of three to five members, respectively) and semi-structured individual interviews with school principals (n = 6) (see table 2 and table 3, respectively.) the questions intended to solicit information on teachers’ perceptions of including learners who experience barriers to learning, meeting diverse learning needs in the classroom and involving the learners in learning. questions further prompted teachers’ understanding of ie and how they support learners who experience barriers to learning. table 2: participants in the focus group (n = 24). table 3: participants in the individual semi-structured interviews (n = 6). the semi-structured interview schedule used the same questions as the focus groups but also included a range of questions to capture a detailed picture of the principals’ perceptions of the implementation of ie in schools. the questions focused on the challenges experienced when implementing ie, teachers’ developmental needs and the strategies used for teacher empowerment at the schools. the interviews and focus group discussions were recorded using a voice recorder. data analysis data processing steps consisted of preparing and organising the data, selecting keywords and quotations, coding the data into categories, searching for themes and reporting the findings (naeem et al. 2023; xu & zammit 2020). ethical considerations all ethical obligations were adhered to for the purposes of ours study. firstly, ethics approval was sought from the college of education ethics review committee at the university of south africa (unisa) (no. 2015/10/14/30074703/01/mc). secondly, permission letters were obtained from the north-west department of education and the principals of the six identified schools. confidentiality was also preserved by using pseudonyms to identify the participants. results the findings highlighted three themes that contribute mostly to the inclusion and/or exclusion of learners and deal with diverse learning needs. these themes emerged from data collected through focus groups and semi-structured individual interviews. the themes included the medical deficit model of teaching, learning and support; inclusion or exclusion of learners who experience barriers to learning; and policy implementation. table 4 provides a synopsis on the themes and sub-themes that emerged. furthermore, the evidence of the findings is provided in verbatim quotations from the focus groups and interviews. table 4: themes emerged from data. theme 1: the medical deficit model of teaching, learning and support several participants displayed a negative attitude and frustration about addressing and responding to diverse learner needs in their classrooms. they seemed to be uncertain about how to support learners who experience barriers to learning and were frustrated about the poor level of support received from the dbe district officials. participants from all six schools identified systemic challenges as having a direct and distinct effect on their daily teaching and learning activities, including teachers’ understanding of the concept of ie, limited available support to learners who experience barriers to learning and limited support to teachers themselves. one of the participants shared the following view during a focus group: ‘you see the problem is, teachers take inclusive education as a monster. it confuses them a lot, and they don’t even want to hear about it…. it is difficult to provide support whereas we need that support as well.’ (fgc3) the participant’s response corroborates what engelbrecht and muthukrishna (2019) mention, that teachers’ attitudes towards ie and their understanding of its meaning influence the success of its implementation. the participant’s statement reflects a pervasive anxiety and resistance among teachers towards ie, which they describe as a ‘monster’ that causes confusion and frustration. this metaphor suggests a serious concern and lack of clarity surrounding ie, highlighting both emotional and professional challenges faced by teachers. such reluctance can undermine the effectiveness of inclusive practices, as successful implementation relies on teachers’ willingness and ability to embrace and adapt to inclusive principles (mfuthwana & dreyer 2018). however, some of the participants made suggestions on how to improve such negative experiences during focus groups. some of the suggestions are captured in the following contributions: ‘as a full-service school, my suggestion is that if there can be a remedial class where these learners with barriers to learning can be referred to. the school should also be provided with a psychologist to assist these learners and to advise us as teachers on how we can address the barriers in our classrooms. we also don’t have relevant assistive devises to support our learners.’ (fgc2) ‘some of the learning needs, want a specialist, this is just an example, psychology or special needs education, to be able to assist those learners with special needs. we are really not trained to address special needs, we are only trained on the teaching methodologies.’ (fgb4) the participants’ statements highlight a perception that learners with barriers to learning require specialised intervention beyond what they can provide, suggesting adherence to the medical model of disability. this model conceptualises barriers to learning and disabilities as conditions requiring expert diagnosis and treatment, often resulting in the separation of learners with barriers to learning from mainstream classrooms (kapp 2019). such a perspective aligns with a belief that only specialists, such as psychologists or teachers trained in special needs, are equipped to support these learners effectively. this belief implies that mainstream teachers are inadequately prepared to address diverse learning needs within inclusive settings (masuku et al. 2021). in addition to the suggestions raised by participants in the focus groups, participants from both mainstream and full-service schools noted other systemic factors as negatively affecting the implementation of ie, such as overcrowded classrooms, limited time to provide support, especially in the intermediate phase, lack of support services and resources and feeling overworked. the following are participant’s views on the matter: ‘it is challenging because those learners have different barriers, so a learner who has barriers to learning, which requires individual attention cannot be given that attention fully because we have 50 – 60 learners in each classroom. if you give individual attention to one learner, the others are suffering. it’s really difficult for us to teach learners with different learning needs in one classroom which is overcrowded.’ (fge1) additionally, participant fge3 stated that the difficulty of overcoming barriers to learning is made worse by the teaching of multiple subjects. this is the comment: ‘i mean if you sit with a class of 55 learners, and also teaching more than one subject …. you still have to prepare for the next day for three different levels of abilities for all the subjects you are teaching.’ (fge3) the participants’ responses emphasise significant contextual challenges that impede the support of learners with barriers to learning in inclusive classrooms. the mention of classrooms with 50–60 learners points to issues of overcrowding, which limits teachers’ capacity to provide individualised attention. in such instances, learners who need additional support are often left unattended, as teachers want to balance the needs of an entire classroom. this reality reflects broader systemic barriers, where the teacher-learner ratio fails to accommodate diverse learning needs, thereby compromising the efficacy of ie (mpu & adu 2021). furthermore, the burden of teaching more than one subject, each with varying levels of learner abilities, intensifies the strain on teachers. as indicated by the second participant (fge3), preparing for multiple subjects across different ability levels within a single classroom becomes an overwhelming task. contrary to what the participants expressed above, there were positive practices from special schools. these responses sum up what the participants have raised: ‘to be honest, we did not experience any form of negativity or negative attitudes on addressing barriers to learning and diverse learning needs at our school. in actual fact, every teacher in this school is willing to provide assistance to all learners. they are really dedicated and committed to their work.’ (pa) ‘teachers, therapists, learner support teachers, psychologists and nurses are always available to support our learners, so i think our kids here are very fortunate because they have all the support they need, so i think that is maybe where the special schools still have a critical role to play.’ (fga1) the responses from the participants confirm the positive practices observed in the special schools, justifying the commitment made by the dbe (2014) to provide support services to special schools, enabling them to offer more intensive support to learners with disabilities. the participants demonstrate how a well-resourced, collaborative and dedicated teaching environment can significantly impact learners with diverse needs. in terms of limited time to support learners who experience barriers to learning, this experience was primarily voiced by participants from mainstream and full-service schools. they referred to limited time in class and to the unavailability of learners after school hours as primary concerns, stating that: ‘we don’t get enough time to assist our learners who have learning problems. immediately when the period ends, the next teacher is already available to start teaching, so those learners who experience barriers to learning did not grasp anything when you were teaching, so they are always left behind.’ (fgb3) ‘most of our learners are using transport to travel to school, so when the schools knock off, the transports are already here and learners go straight to them, so we cannot create extra time to assist our learners or to do remedial work.’ (fge2) the issues raised by the participants from mainstream and full-service schools on limited time serve as a barrier to effective support. participants indicated that they must often move swiftly from one lesson to the next without the flexibility to provide additional support for learners with barriers to learning. moreover, the participants revealed that learners’ reliance on scheduled transportation prevented them from staying after school for remedial support or additional assistance. in contrast to what has been said, there are teachers who are trying their best to provide support. one of the participants said the following: ‘i always try to use the little time that i get to assist those learners who experience barriers to learning, like sometimes i create extra time during their break or after school, because we at the foundation phase, our day end at 13:30, so from 13:30 until 14:30.’ (fgc1) participants, including school principals, expressed a common concern regarding the limited support they receive from district officials. they highlighted the lack of guidance, resources and assistance for learners who have been identified as needing specialised support. here are the participants’ views on the matter: ‘i’m discouraged by the lack of support from the side of the department of education, i mean the department just declare schools as full-service, but they don’t even provide support or resources to them, we are always on our own. we don’t get support at all from them.’ (fgc1) in addition to what fgc1 mentioned, another participant raised the following: ‘yes, we are the sbst, but truly speaking those district officials, or should i say the people high up there don’t give us support at all, in most cases we are on our own. i can say we are the sbst but cannot say we are functional because we don’t get support, we were not trained on our roles, we just read from the ewp 6 and other documents on our roles, no one is assisting us. so, i would say the challenge we experience is lack of support from the dbst.’ (fgd4) the participants’ responses reflect frustration and helplessness, indicating a gap between policy intent and actual support provided to schools. another participant noted that despite identifying learners with barriers to learning, particularly those who require high-level support, the dbst did not intervene. this lack of response underscores a systemic issue, where schools may not receive the support they need to provide appropriate interventions. the participants voiced the following: ‘we are faced with learners who need to be referred to special institutions and we informed the dbst and requested their intervention, but they have never come. we just keep them in the school, there is nothing that we can do….’ (fgd1) in addition to the sub-themes, there was another serious concern regarding the lack of parental involvement; the participants thought that it also contributed to barriers to learning. the participants indicated the lack of sufficient parental involvement as a challenge for effectively supporting learners who experience barriers to learning, mentioning that parents may even contribute to the barriers to learning experienced by their children. a participant explained this view by stating that: ‘most of learners’ parents are not supportive, because the learners will tell us that the parents don’t want to assist them, so you can see that the parents don’t motivate or encourage their children on their schoolwork.’ (fgc3) another participant revealed a threatening response they received from some parents: ‘one parent told us that what is happening in his family is none of our business, we work at school not in their homes, so we should teach the learners and stop enquiring about their family background, that is why we stopped visiting parents, otherwise we could end up being in trouble or being hurt.’ (fgd1) another participant provided another reason for limited parental involvement: ‘some parents are on a denial state, they don’t want to accept that their children are experiencing barriers to learning.’ (fgc3) the feedback from participants suggests that insufficient parental involvement limits the school’s ability to support learners effectively and, in some cases, worsens the challenges these learners face. the disconnect between home and school leads to a lack of comprehensive support for students, highlighting ongoing discrepancies in south africa related to social issues and a lack of cultural acceptance for learners with diverse educational needs (engelbrecht & muthukrishna 2019). theme 2: inclusion and/or exclusion of learners who experience barriers to learning the second theme, also consisting of sub-themes, was on inclusion and exclusion of learners with barriers to learning. key issues that emerged from this theme include the negative impact of remedial class, labelling of learners and persistent tension within the school community regarding the inclusion of diverse learners. the participants did not seem positive about learners being removed from class to attend remedial sessions, because of reasons captured in the following contribution: ‘i think it’s a problem to refer learners to the remedial class during lessons. it means they are separated from the class to the remedial class. other teachers are willing to take over from where the remedial teacher has ended. however, most teachers are not willing to do that, they just continue with their work without thinking for the poor learners who were not in class during that period of time. that means the learners will be left behind each and every time they attend the remedial class.’ (fgb1) for the participants, labelling learners presented specific challenges and did not benefit either the learners or the teachers who included these learners in their classes. some participants expressed frustration over being labelled as ‘inclusive teachers’ by their colleagues. they also highlighted the various levels of challenges that learners may experience, emphasising the need for effective support. the responses show that most teachers still believe in the medical model, as stated by masuku et al. (2021). these sentiments are reflected in the following quotations: ‘other teachers would refer their learners with barriers to our classrooms while standing on the corridors or outside the classroom, like talking loudly to us saying ‘because you have inclusive learners you can be able to help “those”… teachers in this school like to label learners, they even label us, imagine calling me inclusive teacher or inclusive learners. the teachers don’t even bother to tell us the problems that the learner have [sic] … just imagine, how unprofessional it is.’ (fge3) ‘what i noticed in our learners, it’s not that they cannot write, some are not committed to learn, they just write so that they can submit whatever activity given, they are actually very lazy, they don’t take efforts in their work.’ (fge1) additionally, one participating principal expressed the following: ‘remember this concept full-service school does not start now; it has been there even during our time. we have to attend with boys and girls who were not ready for school and the doe does not have any place for these kids. you understand, so they must learn in a normal class whereas they are “not normal” for that matter.’ (p3) the participant’s responses reflect that the issues of remedial, labelling, deficit perceptions and persistent biases reflect an education system that is struggling to transition from medical models to inclusive practices. furthermore, the principal commented: ‘… i heard the minister of education talking about it this year. to my view and understanding, inclusive education and addressing barriers to learning at mainstream and full-service schools is still theory. the minister also said that this is still theory; the practical part of it is not possible.’ (p3-fss) based on these remarks, it points to an entrenched cultural and historical misunderstanding of ie (kinuthia 2022; singal & muthukrishna 2014). contrary to what was raised, another principal was positive that ie can be implemented effectively. the participant concurred with mfuthwana and dreyer (2018) that attitudinal transformation can contribute to the successful implementation of ie. ‘if we can change our attitudes and mind shift, we can be able to implement inclusive education effectively.’ (p2) another point that was raised by one sbst member who is also a member of the school management team was on evaluating learners for admission. ‘this is a special school for [learners with] physical disabilities. it is a special school and resource centre. so, we do evaluate the learners before admit them. we cannot admit a learner with multiple disabilities as we are using the same curriculum that is used by mainstream schools. the admission team is the one that evaluate the learner. it consists of a psychologist, speech therapist, occupational therapists, and some members of the sbst team. if a learner displays multiple disabilities, or any intellectual or sensory disability, then we advise the parent to take the learner to a relevant institution that specialises with [sic] other multiple disabilities.’ (fga1) this feedback highlights significant challenges in the ie framework, especially regarding the effectiveness of the support structure. the response reveals several issues and contradictions within the current approach to ie, especially regarding the criteria for admission and the scope of services offered by special schools. it contradicts the dbe’s vision for special schools, which advocates for inclusive spaces that provide a specialised education programme to learners requiring access to highly intensive educational and other support, either on a full-time or a part-time basis (dbe 2014). theme 3: policy implementation the participants cited several reasons why the implementation of policy documents did not align with their original intentions. among these reasons were limited training opportunities and a lack of involvement in the policy development process. additionally, participants noted that the national school curriculum (curriculum assessment policy statements [caps]) presented certain limitations in addressing barriers to learning. the following excerpts highlight the participants’ perspectives: ‘i think from the implementation of the ewp 6, there are many gaps one can talk about. firstly, let us look at the sias policy … teachers need to be thoroughly trained on it before even implementing it.’ (p3) the participants’ concerns regarding the caps point to systemic issues, particularly regarding insufficient training on policies. another point that was raised by one sbst member, who is also a member of the school management team, was about evaluating learners for admission. referring to the caps document, some participants identified that caps has some flaws that make it inflexible. ‘the curriculum does not cater for learner pace, it does not consider learners who experience barriers to learning, and they have to complete activities within a specific period.’ (fgd3) this sentiment illustrates that the way caps has been standardised may marginalise learners with barriers to learning who are unable to keep up with its pace. another participant noted that caps falls short in offering instructional approaches that address diverse learning needs, stating that: ‘the caps only provides for the contents to be taught and assessment, it does not guide on addressing barriers to learning and responding to diverse learning needs.’ (fge5) in addition, the participants from mainstream and full-service schools indicated that they were always frustrated by the district officials, particularly those responsible for curriculum and assessment. they expressed their frustration towards district officials for not incorporating strategies to address learning barriers, which points to a lack of holistic and differentiated approaches necessary for supporting diverse learners. the following excerpts highlight the participants’ perspectives: ‘those who are responsible for curriculum and assessment do not integrate addressing barriers to learning during their workshops, and they do not consider the fact that there were those learners who experience barriers to learning who need support.’ (fgc3) ‘subject advisors focused on what should be taught, and the number of assessment tasks that should be done per term and they also expect common activities from all learners.’ (fgd3) a further aspect that was raised by participants from the mainstream and full-service schools is the lack of intervention strategies. they raised the lack of accountability within the teachers. participant fgc4 criticised the practice of recording intervention activities only towards the end of the year, implying that some teachers approached intervention as a compliance measure rather than a meaningful process to support learners. they voiced the following: ‘we should actually start with intervention process [sic] immediately when we have identified the learners, and it should first start with the class teacher, but you know what is done here? they only do interventions record towards the end of the year when we are supposed to submit the progression schedules to the district office. and they would point fingers at learners, forgetting that they also contributed in creating barriers to learning for those learners.’ (fgc4) in addition, another participant noted that teachers often neglect to complete the necessary forms, and instead of conducting meaningful interventions, they progress learners who are not adequately prepared for the next grade level. this is the participant’s comment: ‘you see the other thing is, even teachers themselves, we give them the forms to guide them during the intervention process, but they do not complete them, so they just progress the learners even if they don’t deserve to progress to the next grade. teachers do not want to account for learners who experience learning difficulties, they don’t even want a lot of paperwork.’ (fge3) according to the data collected, it is evident that there is an exclusion within ie systems. the findings also confirm that there is a lack of intervention strategies to support learners who experience barriers to learning. discussion the findings on exclusion within an ie system reveal that systemic barriers were experienced when responding to diverse learning needs and when implementing ie practices. these include the use of the medical deficit model of teaching, learning and support; inadequate policy implementation; and a lack of support to both teachers and learners who experience barriers to learning. the participants first expressed their attitude on the implementation of ie. this perspective is similar to the findings of engelbrecht and muthukrishna (2019), who argue that teachers’ attitudes and their comprehension of ie critically shape its implementation. when teachers view ie as a complex and overwhelming concept, they may feel inadequately prepared and unsupported, creating a cycle of unmet needs. notably, the participants also pointed to the need for support among teachers themselves, revealing a potential gap in professional development and institutional resources required to empower teachers to manage diverse classroom needs effectively. the challenge, therefore, lies in addressing both the practical and emotional support teachers require to facilitate ie successfully. this involves not only enhancing their understanding of ie but also fostering a supportive environment where teachers receive ongoing guidance and resources. without such support, resistance may persist, impeding the development of inclusive classrooms where all learners can thrive. furthermore, the participants also raised some suggestions which they thought would address the barriers to learning; however, they were more reliant on the medical model. as argued by masuku et al. (2021), the implication of the medical model perpetuates the practice of diagnosing, labelling and isolating learners with disabilities and those with barriers to learning, thereby excluding them from regular educational activities. this approach can hinder the ie goals of fostering acceptance, participation and equity for all students. embracing a more inclusive model would involve capacitating mainstream teachers with strategies to support diverse learning needs, allowing all learners to thrive within an inclusive educational environment without unnecessary separation. one of the findings was the ambiguity of the policy, advocating for a specialised type of education in some instances. for example, there are special schools that provide a more intensive to higher level of support compared to full-service schools that tend to provide a moderate to high level of support. these schools are said to receive support from the provincial and district doe (2001, dbe 2014). mainstream schools, however, provide mild to moderate support services. these schools are mostly left on their own and receive very limited support from district officials. our findings justify what ewp 6 and the sias policies explain in terms of support services being rendered at the three types of schools (dbe 2014; doe 2001). teachers mentioned a lack of understanding of what constitutes ie, as it is a complex concept; hence, the confusion in its implementation (donohue & bornman 2014; kinuthia 2022; nel et al. 2014). they also raised concerns about the shortfalls of caps, stating that it is inflexible and does not offer instructional approaches that address diverse barriers to learning. while policy documents like ewp 6, sias and caps aim to promote ie, their practical effectiveness is hindered by issues such as attitudes, teacher preparedness, curriculum inflexibility and a lack of support (mpu & adu 2021). the teachers believed that learners who experience barriers to learning should be referred to specialised institutions. this confirms that the medical deficit model still plays a role. for example, it has been revealed that some teachers still label learners as intellectually challenged or special needs learners. these teachers still believe in remediation, where learners who experience barriers to learning are withdrawn from their classrooms to receive support separately from their peers. the practice of removing learners from mainstream classrooms to attend remedial sessions is a recurring concern. as expressed by participants from both mainstream and full-service schools, removing learners separates them from the primary learning environment, which may inadvertently label them as ‘different’ and ‘needing help’ in ways that can lead to social exclusion (haegele & hodge 2016; kapp 2019). while remedial classes are intended to provide support to learners with barriers to learning, they can inadvertently put these learners at risk and reinforce marginalisation. this occurs when learners miss critical components of the curriculum, which increases the likelihood that they may fall further behind in their education. it has also been discovered that evaluation is used for admission at a special school as a resource centre, which, according to the ewp 6 and sias policies, provides high-level support (dbe 2014; doe 2001). according to slee (2019) and walton (2018), exclusion in education is a process of denying learners access to participation in the education system, particularly at schools. therefore, the findings revealed by participants from the special school as a resource centre justify that exclusion is implemented. another systemic barrier comprises the need for more resources and adequate support from the district officials, especially for mainstream schools. support is an important aspect of meeting diverse learning needs and reducing barriers to learning. therefore, the aim is to ensure learning access and participation for all learners to reach their potential (dbe 2014). participants from full-service and mainstream schools indicated that they did not receive adequate support from the dbst, which hindered their ability to assist learners experiencing barriers to learning. furthermore, the participants from mainstream schools stated that the dbst were more committed to the special schools and full-service schools. however, two participants from the full-service school in the rustenburg circuit indicated that they had learners who experienced severe barriers to learning and were identified for interventions by the dbst; however, the team had not intervened or given a recommendation for those learners to be referred to relevant educational institutions. the allegations raised doubt about the dbst’s capability and knowledge of ie principles and practices. it was established that some teachers had negative attitudes towards supporting learners or responding to their diverse needs. according to mpu and adu (2021), teachers’ attitudes are influenced by many factors, such as lack of support, their understanding of ie, lack of resources and lack of skills. teachers’ attitudes might be influenced by their frustrations because of limited understanding of what constitutes ie and lack of support and resources. some participants confirmed that they did not have the required skills, as they were not trained to overcome barriers to learning or to deal with diversity in their classrooms. this made it difficult for teachers to implement relevant intervention strategies to support learners who experience barriers to learning. it was further revealed that learners were left on their own, or teachers would only use those intervention strategies towards the end of the year, when they are supposed to finalise their learners’ progress reports. the participants who worked in mainstream and full-service schools indicated that they had limited time for addressing diverse learning needs. full-service and mainstream schools had overcrowded classrooms. most participants from these schools indicated that they had 50 to 60 learners in their classrooms, which hindered them from assisting those learners who experience barriers to learning. furthermore, most learners in their classrooms experienced learning difficulties. overcrowded classrooms and a high learner-educator ratio can lead to negative teacher attitudes and didactical neglect (meier & west 2020). didactical neglect includes the absence of differentiated learning. for example, participants indicated that despite their efforts to assist learners, they could not give individual attention to learners who experience barriers to learning, attesting to didactical neglect being present because of overcrowded classrooms. furthermore, some participants reported that they taught more than one subject in several classrooms, which made it difficult for them to respond to diverse learning needs. most of the teachers who experienced challenges in responding to diverse learning needs and supporting learners taught in the intermediate phase. like the finding by meier and west (2020), our study showed that overcrowding of learners in classrooms not only caused barriers to accommodating diverse learning needs, it also led to a lack of discipline and disruptive classrooms. transportation was another reason stated for teachers not providing additional support to learners. because most learners used school transport that departs immediately after school, participants could not devise a means of creating extra classes to assist those learners who experience barriers to learning. the lack of parental involvement was another challenge. some parents were in denial that their children experience barriers to learning, whereas others did not want to take the responsibility of working with teachers to support them. one of the reasons might be that parents were not aware of ie principles and the importance of their involvement in education to help their children. limitations our study was conducted in one district, bojanala, in the north west province, south africa, and was limited to six schools, which included two special schools, two full-service schools and two mainstream schools. consequently, the findings may lack generalisability to other schools and regions. additionally, one special school, functioning as a resource centre, was notably well-resourced, with comprehensive support structures including school-based therapists, psychologists, nurses and learner support teachers who offered ongoing assistance to staff. similarly, one of the full-service schools was also well-resourced and situated near to the special school, facilitating convenient access to its services. these unique resourcing conditions may not reflect the realities in other schools, particularly those in rural or under-resourced areas. conclusion our study contributes to the knowledge on how ie can be implemented in such a way that it produces equitable and quality education for all learners. as indicated by the findings, issues of overcoming barriers to learning, responding to diverse learning needs and increasing the participation of all learners in the curriculum of educational institutions remain a challenge. the following recommendations are suggested: it is important for the dbe to review the ie policies regarding the implementation of inclusion regularly and to ensure that these policies are advocated to all stakeholders. the dbe should ensure that the principles of ie, as envisaged in the policies, are implemented effectively in all education systems. successful implementation of ie requires collaboration and cooperation among all stakeholders, including the community, parents, teachers and various education sectors at district, provincial and national levels. it is important that the dbe ensures equitable distribution of resources to all schools in response to diverse needs and support required to overcome barriers to learning. special school resource centres should be accessible to enrol all learners with different disabilities because they are provided with all the appropriate resources. acknowledgements this article is partially based on the author’s thesis entitled ‘a shift from pathological-deficit model: towards productive pedagogies in inclusive schools’ towards a doctoral degree in the department of inclusive education, university of south africa, south africa in december 2017 with supervisor prof. m.w. mndawe. it is available here: https://uir.unisa.ac.za/items/14072a5d-2b47-4669-9756-db447ac7423c. the author would like to acknowledge her d.ed supervisor, professor mndawe, for the guidance and mentoring he provided until the study was completed. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution j.m.c.m. is the sole author of this research article. funding information the author gratefully acknowledges postgraduate bursary funding from the university of south africa. data availability the data that support the findings of this study are available on request from the author. the data are not publicly available because of ethical restrictions. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s results, findings and content. references department of education (doe), 2001, education white paper 6 (special needs education): building an inclusive education and training system, government printers, pretoria. department of education (doe), 2002, implementing inclusive education in south africa: true stories we can learn from, government printers, pretoria. department of education (doe), 2010, guidelines 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https://doi.org/10.17159/2221-4070/2018/v7i0a3 xu, w. & zammit, k., 2020, ‘applying thematic analysis to education: a hybrid approach to interpreting data in practitioner research’, international journal of qualitative methods 19, 1609406920918810. https://doi.org/10.1177/1609406920918810 yin, r., 2017, case study research and applications: design and methods, 6th edn., sage, washington, dc. abstract introduction research context research methods and design results discussion acknowledgements references appendix 1 about the author(s) maxwell p. opoku department of special education, college of education, united arab emirates university, al-ain, united arab emirates negmeldin alsheikh department of special education, college of education, united arab emirates university, al-ain, united arab emirates daniel miezah department of education and psychology, faculty of educational foundations, university of cape coast, cape-coast, ghana haseena shah department of special education, college of education, united arab emirates university, al-ain, united arab emirates hala elhoweris department of special education, college of education, united arab emirates university, al-ain, united arab emirates ashraf moustafa department of special education, college of education, united arab emirates university, al-ain, united arab emirates citation opoku, m.p., alsheikh, n., miezah, d., shah, h., elhoweris h. & moustafa, a., 2024, ‘competence of teachers towards managing trauma among children with disabilities in ghana’, african journal of disability 13(0), a1282. https://doi.org/10.4102/ajod.v13i0.1282 original research competence of teachers towards managing trauma among children with disabilities in ghana maxwell p. opoku, negmeldin alsheikh, daniel miezah, haseena shah, hala elhoweris, ashraf moustafa received: 26 june 2023; accepted: 18 jan. 2024; published: 26 feb. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: although trauma is one of the leading causes of behaviour problems among children with disabilities, there has been limited scholarly interest in trauma management within the discourse of implementation of inclusive education. objectives: the substance abuse and mental health services administration (samhsa) trauma management model was used to study teachers’ awareness of trauma management among students with disabilities studying in regular classrooms. method: a total of 271 teachers were recruited from two municipalities in the central region of ghana to complete the teacher trauma management scale developed for this study. the data were analysed using confirmatory factor analysis, mean scores, multivariate analysis of variances, and linear regression. results: the results showed teachers’ uncertainty towards trauma management, and a positive correlation was also found between the tenets of the study framework. conclusion: the study concluded with a recommendation for contextual development of the curriculum to guide teacher training in trauma management. contribution: studies on trauma management within the discourse of implementation of inclusive education are scarce. this study extends the literature on inclusive education to teacher development to support trauma management among students with disabilities in regular schools. keywords: inclusive education; teachers; trauma management; students with disabilities; ghana. introduction trauma refers to the overwhelming experience of a child that may adversely impact their decision-making and concentration on a given task (phifer & hull 2016; substance abuse and mental health services administration [samhsa] 2014). trauma can result from various experiences, such as neglect, abuse, starvation, bullying, disasters, or witnessing deaths (crosby 2015; little & maunder 2021; maynard et al. 2019; saleem, howard& langley 2022; samhsa 2014; thomas, crosby & vanderhaar 2019). discussions on appropriate ways to support individuals who have experienced trauma are essential because of the enormous consequences it can have (berger & marin 2021; brunzell, stokes & waters 2016, 2019; samhsa 2014). for instance, trauma can have adverse effects on child development in the areas of academics, socialisation, and risk of mental health problems in the future (berger & martin 2021; crosby 2015; crosby, howell & thomas 2018; little & maunder 2021; maynard et al. 2019; saleem et al. 2022; samhsa 2014; thomas et al. 2019). children with disabilities who are unable to communicate their emotions and thoughts may be more affected by the consequences of trauma (little & maunder 2021; schofield et al. 2021), making it difficult for them to seek assistance from their teachers. however, there is scarce literature on the ability of teachers towards managing trauma among children with disabilities. the purpose of this study was to assess the perceived competence of teachers towards trauma management among children with disabilities in inclusive schools in ghana. scholarly interest in trauma-informed practices is increasing, particularly in western countries such as australia and the united states (e.g., berger 2019; berger & martin 2021; gubi et al. 2019; harper & neubauer 2021). consequently, the samhsa model has been extensively utilised for researching school trauma management (brunzell et al. 2016, 2019; tweedie et al. 2017; walker & cox 2013). two domains comprise this model: identifying and managing trauma, which inform support policies. the identification domain examines the impact of trauma on individuals, including events and experiences (samhsa 2014). also, the trauma management domain covers the response of adults or caregivers to children experiencing trauma and their capacity to minimise the burden of trauma on individuals (samhsa 2014). the trauma management model is made up of six tenets: safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice and choice; and cultural, historical, and gender considerations. the current study focusses on the trauma management domain, as research is urgently needed on actual teaching behaviour and perceived competence in addressing trauma in contexts such as ghana. the six tenets of the trauma management domain were operationally defined. first of all, safety involves creating a safe and conducive learning environment (samhsa 2014). trustworthiness and transparency entail teachers developing healthy relationships with their students and involving them in decisions pertaining to their well-being (samhsa 2014). peer support can help teachers promote healthy relationships between students with disabilities and their typically developing peers. collaboration and mutual support are critical when working with students with disabilities and their parents to enhance their emotional well-being (samhsa 2014). empowerment entails providing a platform for students with disabilities to express themselves, encouraging them to embrace their situation, and working towards personal growth. furthermore, it is essential to promote cultural, historical, and gender diversity while supporting policies that encourage the participation of all students (samhsa 2014). previous studies conducted using the samhsa model and other lenses, which were quasi-experimental, aimed at determining the effect of training on teachers’ skills in managing trauma for all children. studies by crosby (2015), howard (2019), and maynard et al. (2019) are some examples of such studies. maynard et al. (2019) conducted an intervention study to demonstrate the impact of training teachers in school-wide behaviour support programmes. based on the findings, the teachers demonstrated comprehension of trauma-informed practices and willingness to assist students susceptible to trauma. additionally, berger and martin (2021) devised a structure to aid teachers in supporting students who are at risk of experiencing trauma. while the training programme has shown some success, it is recommended that teachers receive regular training and support services to assist their students better. several studies have revealed that teachers often have limited knowledge of trauma management, and that schools lack trauma-related policies (berger & martin 2021; phifer & hull 2016). the findings of previous studies could be used to guide practices in western contexts where such studies were conducted. more so, the studies have focussed mainly on teachers’ knowledge about trauma management among typically developing children only. indeed, in teaching children with disabilities, studies have reported that teachers in countries like ghana face challenges in managing difficult classroom behaviour (e.g., mensah et al. 2021). this highlights the need to extend the literature on trauma management to the african context in order to gather baseline information which could inform educational policies and practices. in non-western countries such as ghana, implementing inclusive education is synonymous with creating learning opportunities for students with disabilities in regular classrooms (sharma et al. 2017). limited studies have been conducted globally on teachers’ knowledge of trauma management practices for children with disabilities (e.g., schofield et al. 2021). to address this gap, the current study investigated the perceived competence of teachers in ghana towards managing trauma among children with disabilities. research context ghana is located in west africa, with an approximate population of 30 million (ghana statistical service 2021). disability is defined as an impairment that limits individuals’ ability to see, walk, or perform daily tasks (ghana statistical service 2021). it is estimated that 8% of the ghanaian population lives with a disability (ghana statistical service 2021). despite the significant number of people with disabilities, they still face rejection, discrimination, and exclusion from important activities such as education and employment (kassah, kassah & agbota 2014; opoku et al. 2017). the attitude towards individuals with disability is a consequence of the intersection between disability and culture (baffoe 2013; mprah et al. 2016; opoku et al. 2017, 2020). the onset of disability is linked to superstitions which contribute to their rejection by others (baffoe 2013). the cultural stereotype towards individuals with disabilities is increasingly being challenged and there is ongoing advocacy towards creating awareness about aetiology of disability as well as promoting their acceptance in societies (world health organization 2011). ghana has taken positive steps towards inclusion by participating in the salamanca conference and has started to educate children with disabilities in inclusive schools during the 2003–2004 academic year. this was further enhanced by promulgating the disability act 715 in 2006 (republic of ghana 2006) and the ratification of the united nations convention on the rights of persons with disabilities, which provided the impetus for educating children with disabilities in regular schools. although progress has been made towards implementation of inclusive education, teachers continue to struggle to enact inclusive education for students with disabilities (opoku et al. 2017, 2020; sharma et al. 2013, 2017; singal et al. 2015). however, limited attention has been given to teachers’ capacity to identify and manage trauma among children with disabilities who are at high risk of experiencing trauma because of cultural stereotypes and facing systemic barriers. the following research questions guided this study: what is the perceived competence of teachers towards trauma management among children with disabilities in ghana? which demographic variables can provide additional insights into trauma management among children with disabilities in ghana? which demographic variables can predict the perceived teacher competence towards trauma management among children with disabilities in ghana? research methods and design study participants in ghana, education is structured as follows: early childhood (ages 4–6 years), primary (grades 1–6 [ages 6–12]), junior secondary (grades 7–9 [ages 12–15]), senior secondary (grades 10–12 [ages 15–18]), and tertiary education (ministry of education 2017). education is compulsory through senior secondary. inclusive education has been implemented at the national level, suggesting that all schools across the country are expected to teach every student in one classroom (ministry of education 2017). the target population for this study was teachers working in schools (early childhood to senior secondary) in ghana. one of ghana’s 21 administrative regions and terrestrial plains was conveniently selected for data collection, namely, central region (see figure 1). within central region, the cape coast metropolitan district was further targeted for data collection. out of an estimated population of 31 million in ghana, 9.3% live in central region, including 189 000 people living in cape coast metropolitan district (ghana statistical service 2021). although information about the number of schools and enrolment in the region is scarce, it is where formal education began in ghana. the public and private schools in the region are managed by the ministry of education service, ghana education service. figure 1: map of ghana showing the central region. the teacher inclusion criteria were as follows: (1) teaching in a public or private school; (2) teaching at the early childhood, primary, intermediary, or secondary level; (3) teaching in an inclusive school; (4) familiarity with the concept of trauma; and (5) agreeing to participate in the study. as further detailed in the procedures section, 270 teachers from 18 schools met these criteria (table 1). table 1: demographic characteristics of study participants (n = 270). instrument the initial part focussed on background variables of participants, including gender, age, qualification, school type, level of teaching, marital status, number of children, awareness of trauma policy, and training in trauma management. the selection of demographic variables was based on a review of relevant literature (e.g., de boer, pijl & minnaert 2011) and feedback from experts who evaluated the instrument prior to its implementation. the second part was the teacher trauma management scale (ttms), which comprises 53 items and six sub-scales (see appendix 1). the instrument was anchored on a five-point likert scale: (1) strongly disagree – (5) strongly agree. the development of this instrument followed a six-step approach: creation of the scale, defining constructs, clarifying purpose, item writing principles, validating the scale, and reporting on psychometric properties (tay & jebb 2017). firstly, to create the framework, we followed a deductive approach by studying the existing literature on the relevant components. secondly, we refined and clarified the components of the samhsa model which had already been defined for this study. additionally, we reviewed previous studies that used this model to ensure its proper implementation in our study (harper & neubauer 2021; saleem, howard & langley 2022; schofield et al. 2021). thirdly, the scale’s purpose is to understand teachers’ perceived competence in managing trauma among their students with disabilities. hence, since trauma is rarely discussed in the study context, the authors decided to simplify the components for completion by all teachers as step three. fourthly, the item-writing principle encompasses the instrument’s appropriateness for implementation in different contexts. to achieve this, the first draft, which comprised 82 items, was given to five inclusive education and psychology experts to review and recommend its appropriateness for data collection. after considering the recommendations, a reduced draft, comprising 53 items, was deemed final for data collection: safety (items 1–12; n = 12), trustworthiness and transparency (items 13–21; n = 9), peer support (items 22–30; n = 9), collaboration (items 31–39; n = 9), empowerment (items 40–46; n = 7), and culture (items 47–53; n = 7). fifthly, for scale validation, content validation was performed by experts and statistical analyses. additionally, the instrument was piloted on 20 teachers and yielded a reliability score of 0.78. the expert reviewers and some of the teachers who participated in the piloting provided some comments that were incorporated into the final draft used for data collection. the sixth step involved determining the psychometric properties of the newly developed scale. the results of the confirmatory factor analysis (cfa) and the reliability computation using cronbach’s alpha (≥0.60) (pallant 2020) were used to determine the appropriateness of the newly developed instrument. procedures this study and its protocols were approved by the social science ethics review committee at united arab emirates university (ersc_2022_585). permission was also sought from the cape coast ministry of education municipal office. afterward, the authors randomly selected the schools invited to participate. random sampling was deemed appropriate as the intention was to ensure that teachers from diverse backgrounds participated in this study (ary et al. 2019). the school leaders were sent formal invitations, and those who consented were included. out of the 30 schools invited to participate in this study, 18 schools, representing 60%, agreed to participate in our study. an information statement explaining the study was forwarded to the teachers, followed by an email with a google form link to the survey. the participants completed the instrument in english, and the data were collected between april 2022 and november 2022. the data collection was prolonged as it took time for teachers to respond to the survey. the email inviting the teachers provided information about the study, its objectives, their rights, and the confidentiality of the information collected. consent was implied if the participants read the information statement and proceeded to participate in the study. no reimbursement was offered to the participants. they were assured that their school name, location, or identifiable information would not be used to report the study. data analysis the online data were transferred from google forms to microsoft excel for cleaning before transferring them to statistical package for the social sciences (spss) (ibm, chicago, illinois, usa) version 28 for analysis. the initial computation of the kolmogorov–smirnov and shapiro–wilk tests were not significant, thus supporting the data normality assumption for parametric analysis of the ttms total scale score and six sub-scale scores. following this, cfa was conducted to understand the underlying structure of the ttms. next, the appropriateness of the scale was determined using the following fit indices and cut-offs indicating a good model fit: a chi-square with significance p > 0.05, a comparative fit index (cfi) and a tucker–lewis index (tli) value of at least 0.90, a root square error of approximation (rmsea) and a standard root mean square residual (srmr) value <0.08, and a regression weight of at least 0.50 (byrne 2016). moreover, the relationships between the six subscales were noted and interpreted as follows: small (0.10–0.30), moderate (0.31–0.50), and large (at least 0.51) (pallant 2020). following this, we proceeded to answer the research questions. for research question 1, the mean scores of the ttms total scale score and six sub-scale scores were computed to explore teachers’ perceived competence in adopting trauma management. since the instrument was anchored on a point scale, a composite mean of 4 (sum mean divided by the number of items) was interpreted as adequate perceived knowledge towards trauma management. for research question 2, association between demographic variables and trauma management was calculated for total scale and at sub-scale level. in relation to the total scale, t-tests (demographic with two levels) and analysis of variances (demographic variables with at least three levels) were calculated to explore the relationship between demographic variables and total management scale. homogeneity of variances was observed to ensure that they were not violated. in relation to the sub-scales, multivariate analysis of variance (manova) was used to explore the association of teacher demographic characteristics with the combined dependent variables (i.e., the six sub-scale scores). given that the latent variables measured different aspects of the same construct, it was appropriate to employ manova to observe the combined and individual differences by the background variables. to reduce the risk of type 1 error (guiding against making wrong conclusions), pallant (2020) recommended a more stringent alpha value. therefore, a bonferroni-adjusted alpha level of 0.01 (i.e., 0.05 divided by the number of comparisons being made) (pallant 2020) was set as the baseline for determining whether there were differences among the participants. for research question 3, linear regression was computed to understand the contribution of demographic variables to the variance in teachers’ perception of competence in trauma management. preliminary assessments ensured that the following assumptions were not violated: normality, linearity, multicollinearity, and homoscedasticity (pallant 2020). ethical considerations ethical clearance to conduct this study was obtained from united arab emirates university the social science ethics review committee (no. ersc_2022_585). results confirming the underlying structure of teacher trauma management scale the 53-item ttms (see appendix 1) was validated using cfa, and iterated deletion of erroneous covariances improved the fit indices. eighteen items were supported in this study and yielded the following fit indices: chi-square = 2.19 (minimum discrepancy function (cmin]) = 269.82, df = 120, p = 0.001), cfi = 0.91, tli = 0.90, rmsea = 0.07, and srmr = 0.05. in addition, each of the items had a regression weight of at least 0.50. configural invariance was estimated to ascertain whether the factor structure was valid across different demographics, such as gender (chi-square = 1.90 [cmin = 1139.68, df = 600, p = 0.001], cfi = 0.90, tli = 0.87, rmsea = 0.03, and srmr = 0.05) and school type (public vs. private school), confirming the underlying factor structure of the ttms. the reliability of ttms using cronbach’s alpha was 0.89, and the sub-scales yielded the following scores: safety = 0.61, trustworthiness and transparency = 0.60, peer support = 0.63, collaboration = 0.67, empowerment = 0.80, and culture = 0.83. as shown in figure 2, correlation among the sub-scales was strong, ranging from 0.48 to 0.82. figure 2: summary of confirmatory factor analysis for teacher trauma management scale. perceived teacher competence the overall mean score for teachers’ perceived competence to manage trauma among their students with disabilities was 3.25 (sd) and were as follows for the six subscales: safety (m = 3.12, sd = 0.89), trustworthiness and transparency (m = 3.17, sd = 0.77), peer support (m = 3.25, sd = 0.85), collaboration (m = 3.16, sd = 0.93), empowerment (m = 3.35, sd = 0.96), and culture (m = 3.43, sd = 0.98). differences among teachers in trauma management association between demographic variables and trauma management was computed. the differences were calculated for total management (see table 2) and at sub-scale levels (see table 3). multivariate analysis of variances were computed to measure differences between participants on trauma management (see table 3). the results showed differences between participants on two demographic variables: marital status and training in trauma management. as for marital status, no significant difference was observed among the participants in the combined dependent variables, f (6, 263) = 1.52, wilks’ lambda = 0.97, p = 0.17, with a small effect size, partial eta squared = 0.03. individually, there were differences between the participants in terms of safety, with married individuals rating themselves higher on safety compared to those who identified as single. this difference was statistically significant with a small effect size (f[1, 268] = 8.78, p = 0.003, partial eta squared = 0.03). the mean scores showed that married participants had an average safety rating of 3.26 (sd = 0.82). in contrast, single participants had an average safety rating of 2.94 (sd = 0.96). table 2: association between demographic variables and trauma management. table 3: multivariant analysis of variance showing the difference between participants. in relation to training in trauma management, no difference was found between participants on the combined dependent variables, f (6, 263) = 1.68, wilks’ lambda = 0.96, with a small effect size, partial eta squared = 0.04. individually, the difference was found between participants on safety (f [1, 268] = 7.13, p = 0.008, with a small effect size, partial eta squared = 0.03) and trustworthy (f [1, 268] = 5.55, p = 0.01, with a small effect size, partial eta squared = 0.02). with regards to safety, the mean scores showed that those who indicated they had received training (m = 3.49, sd = 0.83) in trauma management rated themselves higher compared to those who indicated otherwise (m = 3.07, sd = 0.89). similarly, on trustworthy, participants who indicated they had received training (m = 3.48, sd = 0.79) in trauma management rated themselves higher than those who indicated they had not received any training (m = 3.17, sd = 0.86). predictor of trauma management the demographic variables were regressed on the total ttms (see table 4). the contribution of the demographic variables in the variance was 6%, f (9, 260) = 1.92, p = 0.05. however, only teachers’ marital status (b = 0.18, p = 0.01) significantly contributed to the variance in trauma management. table 4: regression of demographic variables on trauma management. discussion trauma is considered an onset of challenging behaviours among children with disabilities (hoch & youssef 2020). this study was conducted against the backdrop of the scarcity of research on trauma management within the discourse of behaviour management. the study presents a valid instrument that could be used to measure the perceived competence of teachers towards managing trauma among students with disabilities. the instrument was subjected to rigorous validation and thus could be used by future researchers in african or similar non-western contexts. trauma management among children with disabilities is unresearched in the african context. notably, efforts towards implementing inclusive education have stalled (singal et al. 2015), with teachers lacking the requisite teaching skills to support students with disabilities in classrooms (mprah et al. 2016). thus, there is an urgency to develop insight into skills required by teachers before they can respond appropriately to classroom trauma. the study has contributed to the literature by developing and validating an instrument that could be used to gather baseline data in other african contexts. trauma management is believed to be a complex phenomenon and, thus, requires a broad or supportive lens (perry & daniels 2016; schofield et al. 2021). the study findings showed positive and significant correlations among all six tenets of trauma management (safety, trustworthiness and transparency, peer support, collaboration, empowerment, and culture). the relevance of the components of the samhsa model has been supported in previous studies on children with disabilities (schofield et al. 2021) and general children (perry & daniels 2016). in inclusive classrooms, teachers consistently exclude children with disabilities, mainly because of their challenging behaviours (sharma et al. 2013, 2017). as part of the effort towards promoting their education in classrooms, teacher training programmes could be developed based on the tenets of the samhsa. however, stakeholder engagements could be organised to discuss the components of the trauma training model before its implementation or reflected in teacher training curriculum. the study findings provided information about teachers’ perceived competence towards trauma management in a non-western context. specifically, the mean scores showed the participants’ neutrality toward trauma management. this suggests that participants who took part in this study might be unsure of the best ways to manage trauma among children with disabilities. this finding partly agrees with previous studies that reported teachers’ lack of knowledge regarding trauma management among general children in schools (berger 2019; berge & martin 2021; brunzell et al. 2019; crosby 2015). the findings support schofield et al.’s (2021) and little and maunder’s (2021) suggestions that studies on trauma management among children with disabilities in regular schools have not attracted scholarly interest. countries such as ghana are struggling to implement inclusive education (ministry of education 2017; singal et al. 2015), and, as such, teachers must be equipped with the requisite knowledge of trauma management. in this way, they would be better positioned to support students with disabilities who are consistently at high risk of marginalisation or exclusion from school. policymakers could consider engaging teacher educators on incorporation of trauma management in the teacher training curriculum. one demographic variable that impacted trauma management was marital status. the computation of manova and regression showed the importance of marital status in trauma management. it seemed married participants were more likely to create a safe learning environment for students with disabilities compared to single participants. this finding agrees with a previous study that reported the influence of marital status on inclusive teaching practices (nwosu et al. 2020). in inclusive education research, it has been inferred that married teachers might be experienced in human relationships and raising children (nwosu et al. 2020). this experience has been argued to be vital to enabling them to become better teachers of children with disabilities compared to those who are unmarried. such inferences could hold for the participants of this study, who may have gained experience that enabled them to create an appropriate learning environment for children with disabilities. there is the possibility that married teachers might have children or have experiences living with their spouse. consequently, they have developed useful skills to create a supportive learning environment and develop relationships with children with disabilities. in the literature, teachers struggle to create a safe learning environment as well as develop relationships with children with disabilities (mensah et al. 2021; sharma et al. 2013, 2017; singal et al. 2015). this study seemed to show that married teachers could have skills that they have acquired through their familial experiences. however, the findings reported here are inconclusive, and future studies should explore how married teachers create supportive learning environments for such students. training in trauma management seems to impact teachers’ perceived competence toward implementing trauma-informed practices for children with disabilities. specifically, the findings showed that those who indicated that they had received training in trauma management seemed to have more knowledge about providing a safe learning environment for children with disabilities than those who indicated otherwise. in inclusive education literature, a large body of literature has reported a synergy between training and knowledge acquisition to support classroom teaching practices (de boer et al. 2011; sharma et al. 2013, 2017). in the trauma literature, it has been reported that teacher training improves their trauma management skills (berger & martin 2021; maynard et al. 2019). it is apparent that in the ghanaian context, if teachers are trained in trauma management, they can create a safe learning environment for children with disabilities at risk of trauma. however, with participants generally ambivalent on each of the tenets, there is a need for more research to develop an in-depth understanding of the training needs of teachers. generalising the study findings is impossible because of numerous limitations. firstly, the study focussed on teachers in both public and private schools in one of the 16 regions in ghana. hence, the interpretation of the findings was limited to the experiences of the teachers who participated in the study. however, ghana is a multicultural society with teachers from diverse backgrounds teaching in public and private schools subjected to common regulatory standards, curriculum, and teacher recruitment. thus, the teachers’ experiences in the included schools could mirror those outside the scope of this study. secondly, the data were collected virtually, with teachers providing their responses digitally. thus, the researchers were unable to ask follow-up questions or seek clarification. future studies could also use qualitative methods to develop deep insights into the trauma management practices implemented by teachers in ghana. thirdly, the participants were recruited by the principals or the school administration. thus, bias is possible, as the school administration could only share the link with teachers who might provide favourable responses. however, since teachers were provided with the information statement, the responses used in reporting this study could reflect the teachers’ perceived competence. finally, this study focussed on trauma without looking at the capacity of teachers to identify and recognise traumatic events. future studies could ascertain the relationship between trauma identity and management among teachers. this study explored teachers’ perceived knowledge of trauma management among students with disabilities in regular classrooms in ghana. this study was conducted because of the interlock between trauma and behavioural problems among children with disabilities (little & maunder 2021). the study findings may be considered in future educational reforms in ghana. the transplantation of inclusive education policies, especially from western contexts, has not helped non-western countries strive to implement inclusive education (kalyanpur 2014). this study showed that teachers were ambivalent on the tenets of the samhsa. there probably is the need for teacher training to improve their knowledge towards trauma management. however, local studies and engagement should drive the curriculum, which should be used for teacher training. for instance, policymakers’ leading efforts toward implementing inclusive education may organise regional meetings with stakeholders, such as parents, teachers, educators, and opinion leaders, to deliberate on the scope and best support strategies using the samhsa model as a conceptual model. these deliberations can help develop appropriate evidence to drive trauma policies and guidelines on management strategies that teachers can adopt. the deliberations could also shed light on formalising professional development in trauma management for in-service teachers. students with disabilities are being denied accessible education, and steps to equip teachers to address behavioural problems could be essential in efforts to promote accessible education for all. acknowledgements the authors would like to thank all teachers who participated in this study. competing interests the authors have declared that no competing interest exists. authors’ contributions m.p.o., n.a., d.m. h.s. h.e. and a.m. was responsible for conceptualisation and m.p.o., a.m., h.e. and d.m was responsible for the methodology. m.p.o was responsible for the software while m.p.o., a.m., n.a., h.e. and d.m. was responsible for the validation. m.p.o. and d.m. was responsible for the formal analysis. d.m. and h.s. was responsible for the investigation, while h.e and a.m. was responsible for the resources. m.p.o., a.m., h.e. and d.m. was responsible for data curation. writing of the original draft was the responsibility of m.p.o., n.a., d.m. h.s. h.e. and a.m. while writing, review and editing was 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vogel, k., 2017, ‘trauma-informed teaching practice and refugee children: a hopeful reflection on welcoming our new neighbours to canadian schools’, bc teal journal 2(1), 36–45. walker, m. & cox, t.l., 2013, ‘building trauma-informed schools and communities’, children & schools 35(2), 123–126. https://doi.org/10.1093/cs/cdt007 world health organization, 2011, world disability report, world health organization, geneva. appendix 1 article information authors: lisbet grut1 gubela mji2 stine hellum braathen1,3 benedicte ingstad4 affiliations: 1department of health research, sintef, norway2centre for rehabilitation studies, stellenbosch university, south africa 3department of psychology, stellenbosch university, south africa 4department of community medicine, university of oslo, norway correspondence to: lisbet grut postal address: po box 124 blindern, 0314 oslo, norway dates: received: 24 feb. 2012 accepted: 15 july 2012 published: 10 oct. 2012 how to cite this article: grut, l., mji, g., braathen, s.h., ingstad, b., 2012, ‘accessing community health services: challenges faced by poor people with disabilities in a rural community in south africa’, african journal of disability 1(1), art. #19, 7 pages. http://dx.doi.org/10.4102/ ajod.v1i1.19 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. accessing community health services: challenges faced by poor people with disabilities in a rural community in south africa in this original research... open access • abstract • introduction    • poverty, disability and health services       • the study setting – rural south africa • research methods and design    • materials and procedure    • data analysis • ethical consideration • results    • past experiences with health services influence today’s expectations       • the search for other options       • poor infrastructure a barrier to local health services       • the loss of a regular income • discussion • conclusions • acknowledgements    • authors’ contributions    • competing interest • reference abstract top ↑ poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. their situation is influenced by multiple factors which unfold and interplay throughout the person’s life course. the difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. the barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person’s perspective of the health services. this article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. the study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. the study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. the data analysis is contextual and interpretive. when offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person’s history, the needs, and the resources and abilities of the family group. rethinking access to health services should transcend a narrow medical institutionalization of health professional’s training, and include a patient’s perspective and a social vision in understanding and practice. such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. such skills lie dormant at community level, and need to be recognized and utilized. introduction top ↑ south-east of mthatha, towards the rugged coast of the indian ocean, lies a beautiful landscape of steep hills and deep valleys. this is amathole district in the eastern cape, south africa. in the rainy season the hills are green, the fields yield their crops and the valley beds flow in rapid streams towards the ocean. in the dry season everything turns yellow and barren. narrow gravel roads, sometimes only walking trails, connect the clusters of rondavels and small houses that are mostly located on the hilltops and high mountain sides. this is the home of mthunzi (a pseudonym), a young man of twenty-one. mthunzi has epilepsy which has led to physical and intellectual impairment. he lives in a small rondavel together with his mother and father, spending his days sitting outside the hut. he does not talk and pays little or no attention to what happens around him. he is not paralysed but he does not walk. except for protecting him from the sunshine and the rain, the parents leave him alone. he does not get medication for his condition and has minimum follow-up from the health services. the local community health worker described mthunzi as a case of neglect, where the parents are neglecting their son. why do they do nothing to help him? how could their lack of effort be understood? this case is from a fieldwork conducted in amathole district, south africa. the case illustrates the intertwined relationship between disability, poverty, and access to health services in a resource poor setting. in order to understand situations, such as the one illustrated in the case, we have applied a broad approach exploring how a person’s life circumstances are influenced by a variety of social, cultural and political factors throughout a person’s life course. in this article we will explore how the many difficulties in the life of a person living in a resource-poor environment may influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. poverty, disability and health services health is one of the fundamental rights of every human being, and a robust and accessible health system is necessary to fulfil this right (who 2008a). there is a close relationship between poverty, ill-health and limitations in access to health services (who 2010a). it is widely recognised that poverty extends beyond deprivation of income and material assets, and that poverty reflects deficiency in many dimensions in a person’s life (townsend 2006, green 2006). poverty is also connected to lack of opportunity to lead a healthy life (fukuda-parr 2006). in this respect, health services, along with food, water, sanitation, and knowledge and education, can be considered necessary conditions for good health. thus, poverty and reduced access to good quality health services are intertwined (wagstaff 2002). in order to alleviate poverty and contribute to better lives for people who are poor it is necessary to address this complexity and focus on the interconnectedness between the many elements of poverty and health (world bank 2000, yeo 2006:74). people in poor countries have less access to health services than those in better-off countries, and within countries poor people have less access to health services than better-off citizens (peters et al. 2008). furthermore, lack of visible improvement after therapy may hamper usability, and cultural belief systems may colour the decisions on health matters as much as modern knowledge of health, disease and treatment (kleinman 1980, ross 2008). people with disabilities are particularly vulnerable in this regard, and their situation is further exacerbated in poor, rural areas (iezzoni, killen & o’day 2006, daley et al. 2011). despite variations, people with disabilities are among the most vulnerable and marginalised groups of any population, and they often face exclusion from mainstream health services (ingstad & whyte 2007:1, saloojee et al. 2007, loeb et al. 2008, smith et al. 2004, rohleder et al. 2009, mccoll, jarzynowska & shortt 2010). among the factors which reduce access to health services for poor people with disabilities are unavailability and inaccessibility of the health services, combined with financial constraints and ignorance of available services, inadequate and inaccessible transport (saloojee et al. 2007, van rooy et al. 2012). africa has the greatest disease burden of any continent and the poorest health services (who 2008b, oestergaard et al. 2011, gore et al. 2011). the african region carries one quarter of the world’s burden of illness, only 3% of the global health work force, and less than 1% of the world’s financial resources (who 2006). the world health report health systems financing: the path to universal coverage (who 2010b) highlights a worldwide shortage of almost 4.3 million doctors, midwives, nurses and support workers. thirty-six of the 57 countries with severe shortages are in africa. seen in an african context south africa has a fairly well developed health system. health policies were amongst the first policies to be given attention when the anc-led democratic government came to power in 1994 (barron & roma-readon 2008:vii). the new government focused on fundamental improvements in basic infrastructure, as well as poverty alleviation strategies. funding was reallocated from specialized services in large hospitals towards decentralised health services, and primary health care facilities and community health care were emphasised (gray and clarke 2000, magnussen, ehiri, and jolly 2004, tshabalala-msimang 2003). in a south african context poverty is linked to past history where apartheid played a major role, but also to the uneven distribution of wealth and welfare in today’s society (crais 2002). despite the relative wealth of south africa compared to other countries in the region, poverty is still rampant for a large majority of the population, and universal and equitable access to health care is still out of reach. the rural areas are the poorest, most under-served and historically most neglected (barron & roma-readon 2008). in 2001 seven of the 10 poorest municipalities in south africa were located in the eastern cape (hsrc 2004). almost 40% of the south african population live in rural areas, but at a macro level the population pattern in south africa, as in many other countries world wide, shows increasing urbanisation. however, there is evidence of cycling migration by bidirectional streams of people between the urban and rural categories (statistics south africa 2006). in the face of widespread poverty, social grants have become the main source of income and livelihood for many families. when a child is born at the hospital he or she gets a birth certificate and a health card. these documents are necessary to access social grants, such as child support grant or disability grant. more than 1.1 million out of approximately 50 million south africans currently receive disability grants (statistics south africa 2007), and in the eastern cape about 74% of people with disabilities receive such grants (jelsma et al. 2008). while this money may prevent complete destitution for individuals and families, it is not enough to escape poverty completely (surender et al. 2007, maistry and vasi 2010). however, studies show that if disability grants are combined with other grants, such as old age pensions and child support grants, these grants may provide rural households with sufficient money to prevent dire poverty (hansen & sait 2011:93). the study setting – rural south africa the study setting is madwaleni hospital catchment area in amathole district in the eastern cape province, which is one of the poorest, most highly populated and most neglected rural areas in south africa (statistics south africa 2007). poor infrastructure still expose people residing in the area to a variety of health hazards. lack of clean water and good sanitation create a number of health threats, including epilepsy caused by the tapeworm taenia solium, most commonly found in fecally contaminated water and undercooked pork (veary & manton 2008). other common diseases in amathole district are tuberculosis, hiv and aids. people with disabilities are considered to be particularly vulnerable (rohleder et al. 2009) both because they may lack knowledge about how to protect themselves, and because information about the diseases may be neither available nor accessible to them(groce 2005). madwaleni hospital catchment area was chosen because it is one of the areas targeted for the new south african government’s health care reform. the district’s health services are based at madwaleni district hospital, a 200-bed secondary hospital. up to 2007 the hospital paid no specific attention to community based services. however, with the introduction of community health care services and their policy for health and rehabilitation, a professional rehabilitation team joined the hospital’s medical team. this team started community and home visits to locate people with disabilities living in the area as well as disability and rehabilitation awareness raising programmes. eight clinics have been built around madwaleni district hospital as a result of the implementation of primary health care services. the eight clinics are managed by skilled nurses and are staffed by nurses and community health workers (chws). the chws are primarily young people trained in basic home care skills. doctors and rehabilitation professionals visit the clinics monthly. the hospital and its eight clinics face the challenge of staff shortages and high staff turnover, especially with regard to medical and rehabilitation professionals. research methods and design top ↑ we conducted qualitative in-depth interviews in the madwaleni hospital catchment area. the interviews were done in november 2008. informants were identified by the rehabilitation personnel at madwaleni district hospital, by health workers at the local health clinics, by local chiefs and through snow-balling. interviews were conducted with 24 persons with a disability and/or their family members, fourteen men and boys, ten women and girls. the informants represent a variety of life situations, types of disabilities, ages, family conditions and settlements (kvale 1996). included in the sample are people with physical, sensory and intellectual impairments. caretakers were interviewed as proxies for the seven children below 18 years and the seven adults who could not speak for themselves. however, the children and adults attended the interviews and were encouraged to participate in the conversation. materials and procedure the study also includes six semi-structured interviews with professionals at madwaleni district hospital, seven interviews with professional health workers, and five with unskilled health workers at four local health clinics.the interview guide was developed from an interview guide used in similar studies in yemen and kenya (grut & ingstad 2006) and was adapted to the south african setting. the study was conducted as a joint effort between the authors of this article who are social scientists from norway and south africa. all interviews were done by the authors. we split into two teams consisting of one norwegian and one south african researcher in each team. the interviews were done in the informants’ homes. the language used was the informant’s mother tongue, in most cases xhosa, with a simultaneous translation into english. the notes which were taken during the interviews were transcribed and discussed among the team members every afternoon during the field work. ethical clearance was obtained from ethical research committees in norway and south africa. consent was obtained from all informants. data analysis  the data was analysed according to a contextual and interpretive perspective (denzin & lincoln 2005), which is well suited when the aim is to explore the multidimetional relationship between disability and access to and usability of health services. within this perspective the person’s life history is analysed according to a life course approach (elder and giele 2009). understanding how a person’s life is shaped by social, cultural, and historical forces will add to the understanding of the person’s situation today. ethical consideration top ↑ the project is approved by the ethical committee of stellenbosch university south africa and the norwegian social science data services the body that approve all research in norway involving individual data. results top ↑ this study shows that access to health services for people with disabilities who live in resource poor communities is influenced by multiple factors which unfold and interplay throughout the person’s life course. the difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. this complex relationship will be discussed through the case of mthunzi and his parents, presented in the vignette of this paper. the family was introduced to the researchers by a health worker at one of the local health clinics. the health worker told us that mthunzi had a bad health condition, and that the parents had declined the health worker’s invitations to come to the clinic. according to the health worker, the parents had been encouraged many times by the health personnel to bring mthunzi to the local health clinic, but had declined. one community health worker said that their decline was a sign of non-compliance and neglect. we were curious to learn more about the family’s situation and to understand the underlying reasons for their choices. visiting the parents, we learned that mthunzi had been without medication for the epileptic seizures for years. at the time of our visit he had five to six seizures a day. years with lack of medication has obviously caused severe intellectual and physical impairment. he easily became tens, and reacted with fits and aggression to disturbances and changes in his environment. to avoid this, the parents disturbed him as little as possible. the interview with the parents revealed that the family had faced many difficulties throughout the years, rooted in social, cultural, and historical forces. the interplay between the many challenges which have unfolded throughout the years, have kept them in poverty and limited their access to health care services. past experiences with health services influence today’s expectations mthunzi’s parents explained how they had tried everything to help their son. mthunzi’s mother remembered that he was a healthy child up to three years of age. he then got pains in his back and bones. the mother took him to the district hospital, which at that time neither had rehabilitation facilities, nor local health clinics or outreach services. it took a whole day by foot to get to the hospital, but at that time mthunzi was little and she was younger and much stronger than she is now. the mother told us that they had kept him hospitalised for a year and a half, and that he developed epilepsy during the stay. the parents could not remember what the doctors at the hospital did to him. neither did they know why he got sick or why he developed epilepsy. they could not remember if they got any explanation about his condition. when he was discharged, the doctors prescribed epilepsy medication and the parents were told to come to the hospital regularly for supplies. the parents expected the medication to eliminate the seizures. when this did not happen, they soon stopped going to the hospital for more tablets, and as a result mthunzi has been without epilepsy medication since early childhood. the search for other options when the medication from the hospital did not work, they took him to a traditional healer. the healer told them that mthunzi had been bewitched by a close relative, and suggested methods for how they should relate to this relative in order to make the seizures stop. this created a feeling of despair in the parents because they had a good relationship with this relative, and they did nothing about it. shortly after, they were hit by another unfortunate incidence when lightning struck their house and the house burned down. these series of misfortune raised a feeling of hopelessness, and they gave up seeking treatment for mthunzi’s condition. poor infrastructure a barrier to local health services when the local health clinics were established in the area this could have represented new opportunities for mthunzi and his parents. but in order to receive health services, they have to turn up at the clinic. they explained that they live four hours walk on narrow gravel roads from the nearest health clinic. the roads are steep and in some places there are only paths to climb up and down. there is no access to safe drinking water or latrines in the neighbourhood, and there is no electricity in the area. public transport in the form of small pickup-trucks is available on the main roads. because mthunzi must be accompanied, transport implies paying for an extra person. wheelchairs are only exceptionally admitted on public transport, and also only when charged an extra fee. a person who does not behave in a socially acceptable manner will often not be admitted on the bus. when mthunzi has been transported in the past it has resulted in him having seizures, soiling himself and becoming violent. this situation is embarrassing, arduous, and frightening to the parents, and as a result they opt not to use public transport. the only alternative is to transport him in a wheelbarrow. however, the parents are elderly and not physically strong. the distance is too far for them to walk and the hills are too steep for them to manage with a wheelbarrow. the loss of a regular income the family is poor and without any regular income. because of the impoverished landscape (crais 2002), families in amathole rarely make an income from what they grow. many of the men in this area have had to stay away from their families for long periods, sometimes for years, in order to find work. labour migration may represent an opportunity by providing a sustainable livelihood when there is no opportunity at home (narain 2006). but migration also deprives the household of a family member who could otherwise contribute to the daily chores. in the past mthunzi’s father used to be away for long periods working in the mines in johannesburg. when he was a miner, the father had a regular income and the family managed reasonably well compared to the general standard of living in the area. at that time the family had some cows and some sheep. however, the father was injured some years ago and he lost his job. he has been unemployed since then. because he has not received any compensation from the mining company, the lack of a regular income has forced them to sell the live stock one by one in order to manage. at the time of this field work they had three sheep left.a disability grant for mthunzi could have been an income option for this family, and it could have provided them with means to pay for some of the expenses connected to accessing health services. as mthunzi was born at home he was never registered at the hospital’s birth clinic. because of this he has no identity-card and consequently he is not entitled to a disability grant. similar to mthunzi many adults and elderly do not have a grant because they were born at home. to obtain a grant as an adult or elderly person one must go through procedures which imply several visits to public offices and health services in order to collect and fill in the necessary documents before one can go to the office and collect the grant. mthunzi’s parents are not capable of bringing mthunzi through these procedures. discussion top ↑ our case illustrates how people with disabilities who live in resource-poor areas experience a number of barriers associated with individual and societal poverty. their situation houses problems of poverty and suffering (farmer 2001) that stem from constraints created by the interplay between individual misfortune, an impoverished landscape, and the constraints set by the politics of the past and present (crais 2002). through an exploration of how their lives have been influenced by a variety of social, cultural and political barriers it is possible to understand the rationale behind their choice of not seeking health care even when the needs are obvious and services are available in the area. health professionals and patients carry different positions and obligations in relation to the health system, and they base their expectations and actions on very different perspectives. however, in order for health services to meet a person’s needs, and offer adequate and adapted services, it is fundamental to understand the rationale for the person’s actions and priorities. this is particularly important in an impoverished setting. to incorporate the person’s life history into the case and to understand the person as a member of a family group and of a community under constant strain will provide a better understanding of the reasons behind non-compliance, and subsequently offer adapted services. the african philosophy of ubuntu emphasises that ‘a person is a person through their relationship to others’ (boon 1996, van niekerk 2007). in this context the impacts of disability reach far beyond the disabled individual and affect the entire family, who become ‘the disabled family’ (ingstad 1997).as the case in this study illustrates, understanding how a person’s situation is influenced by individual (mis)fortune and changing social, cultural, and historical forces would reveal that non-compliance is not necessarily about neglect. non-compliance could as well be a matter of lived poverty throughout one’s life course. one aspect of poverty is the struggle of the individual and the family to cope and make a life for themselves despite hardships. the case in this study was chosen because it illustrates significant findings of the overall study. the informants first and foremost tried to improve their life situation within the limits that are set by social, cultural, and political forces. for mthunzi’s family this implied improving his situation by having the epileptic seizures and aggressive behaviour controlled. mthunzi’s parents had learned that the best way to avoid seizures was to leave him in peace and not take him away from home. similar to many other informants in this study, the parents of mthunzi saw little use in making the effort to bring him to the clinic for medication. the effort involved in moving him was not worth the gain of getting a medication that the parents had perceived as having no sustainable effect. in fact, the journey might cause them embarrassment and danger by him having a fit of rage and soiling himself. given their situation, this non-compliance could be understood as a rational choice. the chance of receiving help from the health professionals was weighed against the money spent and the effort and social costs involved. similar to many of the informants in this study the parents of mthunzi lacked knowledge on how to acquire and sustain good health as well as knowledge about training and rehabilitation. in particular they lacked knowledge on how medical treatment works. basically, they lacked the means to respond to the initiatives of the local health personnel. similar to many of the other informants, they all too often had to choose between high costs use of scarce money, effort and energy weighed against their daily chores and responsibilities. these choices were made against a background of earlier experiences, (lack of) knowledge on how to sustain and gain good health, unfulfilled expectations of a cure, and how health, illness and (mis)fortune are understood and coped with within their cultural context. faced with the burden of poverty, lack of compliance could be understood as a rational choice against a background of a social suffering with deep historic roots. conclusions top ↑ poor people’s choices and decisions must be understood as shaped by the many negative factors that influence their lives. the complexity of the barriers which unfold throughout a person’s life course create difficult situations and may prevent the person from accessing health care services even when the services are available. looking at each factor separately without understanding the connection between them can easily make us think that some of them are rather trivial. by taking a deeper look into the situation, it is evident that the interplay between the many different elements creates situations with significant obstacles. the combination of the many factors creates barriers to accessing health care services that may be too challenging to overcome even with well-functioning local based health care services in the area. when offering health care services to people who live in resource-poor settings services should take into consideration the needs as well as the resources and abilities of the family group. rethinking the notion of access to health services in under-resourced areas, calls for a need to transcend a narrow medical institutionalization of health professional’s training, and to also include a social element in their understanding and practice. further, in line with an extended health professional approach there is a need to develop the training and the tasks of the local, often unskilled, health workers accordingly. the close link between disability and poverty cannot be underplayed and should be acknowledged and integrated with health policy and strategies. the future development of health care services should focus on bringing medical services and treatment out to the disabled person and the families; with a stronger emphasis on involving skilled and specialised medical and health professionals higher up in the hierarchy in outreach and home-based services. in cases where this is not possible, there is a need to strengthen accessible transport facilities in order to bring the patient to the hospital. when focusing solely on the limited resources in the health care services and the lack of compliance of the patient, there is a risk of ignoring the resources of the family and the community. a family perspective requires looking for innovative models that integrate the skills of health professionals with the contextual knowledge and individual experiences of disabled people and their family members. such resources lie dormant at community level and should be recognized and utilized. health service systems are expected to respond to and implement health policies and strategies. in south africa the introduction of local health clinics is one strategy to reach out to the poor population with health services. it is, however, a serious challenge to these initiatives that the realities of the poor population produce huge barriers to accessing the services and thus threaten health equity. while sufficient resources in health care is crucial, it is also key to improved access to health care that the knowledge and experiences of poor people are integrated into health services and utilized as a resource. this further brings into question whether individually based incentives, such as disability grants, may overshadow the overwhelming need for improvements in infrastructure, including roads, affordable and accessible transportation, and provision of safe drinking water and sanitation facilities. not least, this study indicates that a community based approach to health and health services should acknowledge that a person’s life is influenced by a variety of social, cultural and political factors. this may be a viable strategy for incorporating the knowledge and experiences of poor communities, and for reaching out to the poorest of the poor. further, improving the skills of the community health workers in basic health and rehabilitation could alleviate the load that parents of children with impairments experience. acknowledgements top ↑ role of the funding source: the study is funded by the research council of norway according to the research programme global health. the funder has no other role in the project. authors’ contributions all authors have participated in the field work, the data collection, the analyses and the writing of this article. competing interest the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this paper. reference top ↑ barron, p. & roma-readon, j., 2008, ‘primary health care in south africa: a review of 30 years since alma ata’ in j. barron, & j. roma-readon (eds.), south african health reivew 2008, pp. vii–xi, health 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the ‘new’ development agenda’, in b. albert (ed.), in or out of the mainstream? lessons from research on disability and development cooperation, pp. 74–88, the disability press, leeds, uk. abstract introduction research methods and design results discussion conclusion and recommendations acknowledgements references footnotes about the author(s) erna van der westhuizen department of global health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa surona visagie department of global health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa citation van der westhuizen, e. & visagie, s., 2025, ‘amplifying voices: the transformative power of voice and voice economy’, african journal of disability 14(0), a1742. https://doi.org/10.4102/ajod.v14i0.1742 original research amplifying voices: the transformative power of voice and voice economy erna van der westhuizen, surona visagie received: 09 may 2025; accepted: 17 sept. 2025; published: 31 oct. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: parents of children with disabilities often experience marginalisation and exclusion from decision-making processes. the concept of ‘voice’ as identity and agency is central to addressing these injustices. the parent network (pn) and let’s talk parent tool (ltp) were created to amplify these voices and promote inclusive participation. objectives: this study explores the conceptual foundations and practical implementation of the pn and ltp. it investigates how these tools empower parents, particularly mothers, to engage in policy dialogue and advocate systemic change. method: using a qualitative descriptive approach, data were gathered in july–august 2023 from two purposively selected key informants and supporting grey literature. a whatsapp-based focus group enabled rich, reflective responses. data were thematically analysed using atlas.ti, with iterative coding to identify themes. results: themes revealed the pn’s role in reducing isolation, enhancing self-representation and building parent-led networks across all south african provinces. the ltp tool supports policy monitoring by allowing users to document accessibility barriers. offline functionality and multilingual support increase accessibility for digitally marginalised families. conclusion: the pn and ltp create transformative spaces where parents reclaim their voices and influence decisions that affect their lives. these tools address systemic inequities by promoting emotional safety, digital inclusion and local leadership. contribution: this study contributes a replicable model for digital voice empowerment. it highlights how community-driven platforms can support participatory policy development and build a ‘voice economy’ that values lived experience as a catalyst for social transformation. keywords: voice; voice economy; empowerment; parents of children with disabilities; participation; representation. introduction empowerment enables individuals to become agents of their own progress, fostering equality and participation within inclusive societies. central to this process is the concept of ‘voice’, which reflects identity, agency and self-representation. marginalised groups, particularly caregivers of children with disabilities, often experience exclusion from decision-making processes. reclaiming their voice and agency empowers them to advocate for their rights and influence policy decisions for systemic change. the ‘voice economy’ further emphasises the collective value generated when individuals share their experiences and perspectives, contributing to social transformation (van der westhuizen & visage 2025). however, these caregivers are often excluded from formal decision-making processes and lack platforms through which their lived experiences can shape public discourse or policy. in response, tools like the parent network (pn) and let’s talk parents (ltp), developed by the shonaquip social enterprise (sse),1 promote this by enabling parents to engage in decision-making and policy monitoring, bridging gaps in implementation and fostering sustainable impact. this article explores the conceptual basis and operational implementation of the pn and ltp. participation and representation: voice matters interaction is essential for participation, and voice, in its universal nature, is a key facilitator of this interaction. it offers a personalised medium through which individuals can engage, share ideas and come to agreements (bhatti et al. 2020). in democratic nations like south africa, this voice is not only symbolic but institutionalised. the independent electoral commission (iec), for example, encourages citizens to vote, positioning their voice as a mechanism for decision-making that shapes one’s life and country. similarly, policy processes such as white paper on the rights of persons with disabilities wprpd (department of social development [dsd] 2016) invite citizens to use their voices to influence governance. using your voice implies ‘owning your voice’. this concept involves expressing yourself, forming and sharing opinions, vocalising your thoughts and being genuinely heard and seen. in alignment with the human rights approach to disability, it can be argued that using one’s voice is a critical aspect of exercising and claiming rights (masferrer 2023; thambinathan & kinsella 2021). being part of a community where one feels confident in self-expression signifies a sense of belonging to that community, both essential for fostering representation and voice (cobigo, martin & mcheimech 2016). however, owning a voice is not guaranteed for everyone. marginalised communities often lack sufficient self-representation, receiving minimal attention from both their own communities and prominent figures. they are frequently subjected to bias and discrimination, even when their societal contributions are noteworthy. misrepresentation occurs when the standards, values and voices of those in authoritative positions are taken as the norm. these circumstances hinder the potential for improving the active participation of marginalised groups, such as people with disabilities (chowdhury 2022; leng, huang & zhou 2024). approaches to disability and voice empowerment the evolution of various disability approaches has influenced voice and representation, shaping marginalised groups’ perception of their right to assert agency. the medical model promotes curative interventions and impairment-focused rehabilitation to achieve a perceived level of ‘normality’. in the process, the medical model reinforces patriarchal authority and grants excessive control to so-called expert professionals over the lives of people with disabilities (hussey et al. 2017), silencing and disowning voices (carling-jenkins 2016; ned 2022). on the contrary, the human rights approach emphasises dignity, equal opportunity and non-discrimination, advocating for full participation in society (ngcobo & gumede 2022). the human rights framework emphasises the value of inclusive participation in overcoming historical power imbalances, shifting from privileging the voices of a select few to embracing the diverse perspectives of all. author and storyteller chimamanda ngozi discusses how the concept of a ‘single story’ shapes our self-presentation and our impact on others. she uses the term ‘single story’ to describe the inaccurate perceptions and oversimplified understandings of individuals, groups or communities resulting from a singular narrative: ‘the single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete … they make the one story become the only story.’ (ted 2010: 13:13/19:16) voice empowerment embraces the narratives of marginalised voices and facilitates the shift from a single story to a more comprehensive narrative. this not only reduces social exclusion but also opens the door to sharing constructive ideas aimed at enhancing the rights of people with disabilities and their families. it is, therefore, crucial to consistently listen to and learn from those most affected by social issues. voice empowerment involves validating their lived experiences and empowering them to lead the driving change. it is essential to believe in their stories, provide platforms for their voices and share their experiences without making ourselves the focal point. this includes examining who gets represented, who can voice their opinions, and how and by whom they are represented in the policy formation process. developing the confidence and voice to transform daily realities requires a multifaceted approach that encompasses systemic changes, inclusive empowerment and the creation of an environment rooted in inclusivity and equity, where marginalised voices are actively sought out, heard and respected. rather than imposing our opinions, we should ask about the resources, community assets and systems that genuinely support marginalised groups such as persons with disabilities (hutcheon & lashewicz 2019; ned 2022). therefore, voice empowerment enables individuals to assert their rights and shape the decisions, policies and conditions that impact their lives. a human rights-centred approach acknowledges everyone as agents of their own progress, advocating for equality, participation and inclusion (borry & reuter 2022). this approach not only promotes moral integrity but also accelerates progress toward equitable and sustainable development. it highlights the transformative potential of human rights in driving development agendas. additionally, accountability and remedial actions for human rights violations are crucial, necessitating robust laws, policies, institutions and administrative procedures to address and rectify injustices (brear 2020; browne & millar 2018). voice economy empowered voices emerge from environments where individuals feel emotionally safe and included, fostering a sense of agency, self-determination, and representation. this creates a system where the expression and exchange of individual and collective voices generate collective value, drive social transformation, and address systemic barriers like ableism. a voice economy emphasises strengths-based practices, inclusivity, collaboration, and the use of digital technologies to ensure all voices are heard and valued, fostering equity and social justice (van der westhuizen & visagie 2025). similar to how conventional economies create value by efficiently allocating resources to produce goods and services, social collective value can be created when marginalised individuals, such as parents of children with disabilities, are given platforms to express their experiences, opinions and knowledge. this results in innovative solutions and social transformation. a voice economy, therefore, emphasises strength-based practices, inclusiveness and collaboration, viewing contributions as valuable assets that can influence policy, build social capital and foster self-efficacy, ultimately leading to meaningful and impactful outcomes (van der westhuizen & visagie 2025). voice economies play a crucial role in challenging power hierarchies by recognising and validating contributions from all individuals, particularly marginalised groups (van der westhuizen & visagie 2025). collective voices have the power to influence critical aspects of people’s lives, fostering personal transformation by enabling them to express themselves and assert their positions within societal structures. this provides the opportunity to challenge power imbalances, reshape societal identities and roles and counteract dominant narratives through local and national advocacy. virtual communities, smart applications and voice digital technologies, including apps like whatsapp, are emerging as strategies for marginalised groups to amplify their voices (magee, leman & balasubramaniam 2024; ortiz et al. 2019). lievrouw (2011:2) describes digital technologies as ‘inexpensive, powerful tools’ that provide a platform for expressing viewpoints that might otherwise remain unheard or suppressed in public discourse. however, connectivity and accessibility to such technologies are uneven and shaped by socio-economic factors, with individuals from low-income or rural communities often facing barriers to data, devices and reliable internet access (colom 2020; gogginf & ellis 2020). consequently, these technologies facilitate social movements, empower previously excluded individuals to voice their concerns, coordinate campaigns for change, mobilise the public, document injustices and disseminate information to broader audiences (anderson et al. 2021; herawati, maro & widowati 2024; ortiz et al. 2019). the potential of digital applications to foster participation and amplify voices offers reassurance to parents of children with disabilities (cwd) and other marginalised groups that their voices are important and can bring about change. by utilising technology to elevate these voices – especially when framing inequalities from a grassroots perspective – it becomes evident that the effectiveness of national and local agencies is often limited without the support and commitment of community and voluntary groups (welch et al. 2023). moreover, digital platforms allow individuals unable to attend physical meetings, such as parents of cwd, to have their voices heard, thereby enabling broader participation and amplifying a greater diversity of voices (olanrewaju et al. 2021; van toorn & cox 2024). this, in turn, fosters a greater sense of ownership within the process. mothers (families) of children with disabilities and voice caring for cwd usually falls on the mother or other women in the family (vadivelan et al. 2020). for this article, however, we embraced south africa’s diversity of family forms and went beyond ties of blood, marriage, kinship and legal arrangements. we use the terms ‘family’ and ‘mothers’ in the context of social connections and identity ties, which extend beyond a particular physical residence (dsd 2013). mothers and fathers of cwd experience more psychological and physical challenges than their peers without cwd, including sleep deprivation, headaches, fatigue and muscular pain, to name a few (chen et al. 2023; mclorie, hackett & fraser 2023; woodgate et al. 2024). they face isolation because of social stigma and prejudice (mkabile & swartz 2020; ngubane-mokiwa 2018; walters, britz & van der westhuizen 2020), which often disempowers them. they navigate life with limited knowledge and support. their efforts to access information and services are typically driven by individual responses to disenfranchisement rather than a facilitated process supported by policy implementation (holness 2022; molokwane & tshombe 2018; ngcobo & mabuyi 2022; the presidency 2013). parents frequently find themselves marginalised and voiceless when advocating for their child’s well-being, being dismissed or overlooked by institutions, educators and healthcare providers (walters et al. 2020). this not only deprives parents of their rightful role as advocates but also removes the opportunity for the broader community to benefit from crucial perspectives that could lead to more inclusive and effective support systems for cwd (antwi 2023; cowhy, mulroy & bonilla 2024; rossetti et al. 2020). the prevalence of the medical model of disability (world health organization [who] 2001) exacerbates their experiences of exclusion and voicelessness (hussey et al. 2017). the prioritisation of professionals who are more educated, respected and influential in decision-making has resulted in professional gatekeeping to resources (carling-jenkins 2016; dsd 2016), enforcing class systems and unequal power relations in society (ned 2022). problem parents’ voices are often overlooked in society and policy development, despite their intimate familiarity with their children’s unique requirements through lived insights and invaluable experiences (guo et al. 2014). instead of being advocates for their children and drivers of their futures, they are left without a voice and choice (walters et al. 2020). even so, ironically, in numerous countries, it is through the lobbying efforts of parent associations that essential services have started to be extended to families of cwd (mcdiarmid, pineda & scothern 2021). through this active engagement, parents play a central role in influencing policies that directly affect their lives and communities (holness 2022; vivier & sanchez betancourt 2023). in south africa, the experience of being voiceless and disempowered led to a digital pn and ltp tool. the pn and ltp are pioneering strategies in south africa, and possibly africa. while anecdotal evidence and stakeholder interest highlight their value, and 2 years of operation and growth suggest sustainability, neither has yet undergone formal evaluation. a phd study evolved to describe the digital pn and ltp tool, user experiences and satisfaction with it, and to explore if these applications could provide a framework for voice and voice empowerment. this article describes the conceptual framework and processes of the pn and ltp. future work explores user satisfaction with the pn and ltp and the role the pn and ltp play in the lives of mothers of cwd. the parent network and let’s talk parents tool in response to the need for support and connection among families of children with disabilities, sse (2021) launched a pn (sse annual report 2022 and 2023). this digital network leverages existing technology to enable parents of cwd to connect and address their challenges across all nine provinces of south africa. by utilising smartphones, parents participate in training and support sessions via whatsapp. the pn’s work is rooted in participatory practices, empowering parents to actively influence decisions that affect their lives and to help identify solutions to the barriers they encounter. the model is specifically designed to address the marginalisation of voices by promoting meaningful participation. as parents’ awareness of disability policy increased through the pn, their need to understand and engage in monitoring policy became evident. to address this need, a monitoring tool, the ltp tool, was created as a sub-section of the pn to facilitate the user-friendly monitoring of the implementation of the south african wprpd as part of the pn (sse annual report 2022 and 2023). research methods and design this study formed part of the first author’s phd. a transformative paradigm guided the research, as it emphasised advancing social justice and addressing power inequalities (mertens 2012). central to this approach are ongoing dialogue, power-sharing, mutual respect and collective action, which were essential components of the study methodology (godden 2017). a steering committee was established to guide the research. it included three representatives from the study population, two from sse, the first author’s phd supervisor, and the lead author. the committee ensured the study’s practical relevance helped mitigate bias stemming from the lead author‘s involvement in the pn and ltp initiatives. the phd supervisor provided academic guidance, including methodological support and oversight of data analysis. the steering committee contributed extensively to shaping the study’s questions, aims, objectives and methods. communication occurred through whatsapp and zoom meetings, and all correspondence was saved as part of the study’s audit trail. this article describes the pn and ltp through the eyes of two purposively selected key informants. the two key informants held comprehensive knowledge and insights into the pn and ltp tools. key informant 1 (ki1) provided insights from a dual perspective – both as a parent of a child with disability and as an administrator within the pn. key informant 2 (ki2) contributed perspectives from her role as a project manager. she also co-designed the ltp tool alongside the first author. additional data were gathered from virtual and physical documents related to the ltp and pn. finally, the reflections of the first author, the co-founder of the pn and ltp, were a source of data. a qualitative descriptive design was used to gather information to describe the conceptual framework and processes of the pn and ltp (bradshaw, atkinson & doody 2017). after obtaining informed consent, data were collected in july 2023 and august 2023, in english, via a whatsapp focus group. the whatsapp group included the two key informants and the first author. all information was treated confidentially. both participants expressed a preference for responding to questions via whatsapp rather than participating in semi-structured interviews. this method allowed them more time to reflect on and consider their answers before responding. the data were analysed using an inductive thematic approach, with the support of atlas.ti software. the data were thoroughly reviewed to capture the respondents’ perspectives, and initial codes were assigned and recorded within atlas.ti. as the analysis progressed, the initial set of codes was modified, recognising that human interpretation extends beyond the capabilities of software programs (linneberg & korsgaard 2019; locke, feldman & golden-biddle 2023). during the analysis, some themes were merged, while others were newly formulated to ensure they accurately reflected the data (maguire & delahunt 2017; nowell et al. 2017). this careful refinement of themes ensured that the analysis remained true to the participants’ experiences and insights (maguire & delahunt 2017; nowell et al. 2017). member checking took place. trustworthiness several strategies were implemented to ensure the study’s trustworthiness. the researcher maintained a reflective stance throughout because of close involvement with the pn and ltp. measures included forming a diverse steering committee, applying theory-based tools, and appointing an independent research assistant for aspects of data collection. the steering committee played a critical role in shaping the study design and ethical protocols. credibility was further supported through member checking, triangulation with document data and iterative analysis. dependability was enhanced through transparent documentation and the use of an audit trail. confirmability was strengthened by reflexive journaling and committee feedback, while transferability was supported through rich descriptions of context and participants. ethical considerations the study received ethics clearance from the health research ethics committee at stellenbosch university on 23 march 2023 (hrec reference no: s23/01/010 [phd]). participation was voluntary, and no data were collected before written informed consent was obtained. participants could benefit from the study if their insights contribute to improving how the pn and ltp serve communities. anonymity and confidentiality were maintained throughout. results in line with the study’s aim of examining the conceptual foundations and practical implementation of the pn and ltp, the thematic analysis identified four overarching themes: (1) the ‘accidental’ start of the pn, (2) the pn as a virtual network addressing parental isolation and fostering capacity building, (3) roles within the pn and (4) the operations of the pn (table 1). table 1: emerging themes and sub-themes. theme 1: the ‘accidental’ start of the parent network: a reflection in december 2018, while undertaking a fellowship with the atlantic institute on a health equity advocacy project in south africa, the lead author faced challenges in collecting data needed to understand out-of-pocket costs for people with disabilities (pwd) and their families. these challenges included being unknown to participants, a lack of community entry paths, and limited access to parents of cwd because of their isolation. additionally, parents were often reluctant to participate, perceiving the researcher as an outsider and a ‘professional’, which hindered trust building: ‘such professionals are perceived as being more educated, engendering respect and having influence with greater control over access to resources. this can reinforce class systems and unequal societal power relations that we need to overcome.’ (atlantic fellows 2023:n.p.) the turning point came when the researcher collaborated with 14 trusted community leaders, including parents of cwd, who were already embedded in their local community and possessed strong facilitation skills. a whatsapp group was created for collective problem-solving and data collection. this participatory approach empowered community leaders and led to meaningful conversations about disability-related issues: ‘creating an environment where people can develop their capabilities, live together in peace and feel a sense of belonging and ownership’ (atlantic fellows 2023:n.p.) after the project concluded, discussions on the whatsapp group continued, highlighting the need for ongoing support to parents of cwd. this led to the experiment of launching a virtual network to provide a platform for parents to connect, share experiences and support each other in raising cwd. this marked the beginning of the pn. the pn’s design embraced a transformative paradigm, shifting away from hierarchical power dynamics and drawing on the strengths and experiences of parents who had first-hand knowledge of the challenges they faced: ‘it is really … how do we reach far more families in south africa by doing it with parents, in partnership with them and not thinking that we must be the people to do that always.’ (atlantic fellows 2021, 03:19) ‘parents know enough; they got specific skills and experiences.’ (atlantic fellows 2021, 01:43) as word spread about the pn’s existence and value, more parents requested to join the whatsapp group as a space where their voices mattered: ‘decades of power have isolated them and silenced their voices. breaking this isolation is critical’ (atlantic fellows 2023:n.p.) this led to the network’s formal establishment in december 2019, with approximately 100 parents (figure 1). in the early stages, the network was of such a limited scale that parents could be manually plotted on a map using sticky notes: ‘the parent network is a catalytic community of parents of children with disabilities that are coming together, organising themselves in a particular way to get information from really grassroots level, lived experiences of people. really it is about creating quality information and then share the information to parents of children with disabilities.’ (atlantic fellows 2021, 01:14) figure 1: first mapping of the network, small enough to do it manually with sticky notes. to practice transformative principles for voice empowerment and ensure the effective design and implementation of the network, an advisory committee was formed in 2020. the committee comprised five members: two fieldworkers and parents from the eastern and western cape economic studies and three identified through sse programmes from the northern cape and gauteng. the intention was to have representation from several provinces and to ensure that diverse voices direct the development of the pn. this committee played a crucial role in guiding the board of trustees and facilitating discussions on the network’s model and design, which were rooted in principles of social justice inspired by the work of sensoy and diangelo (2009). these conversations continued to be guided, with ongoing advocacy for the purpose and role of the pn. as the network continued to grow, the advisory committee naturally dissolved in 2020, reflecting the organic development and empowerment of the community. i acknowledged this as part of the social innovation process and believed that the committee had served its purpose and that we were entering the next iteration of the pn. network parents emerged, taking on key roles in driving the network’s initiatives and shaping its future. at this point, the network had grown from the initial 14 parents to 122. theme 2: the parent network: a virtual network for parents of children with disabilities to address parental isolation and capacity building the network addresses the critical need for support and connection among families of cwd. by encouraging active participation and empowering parents, it enables them to have a stronger voice in decisions impacting their lives, as highlighted by key informants and myself: ‘it is very important to have such network, as us, most of the parents who are raising children with disability, we don’t have much information about disability.’ (ki1, parent of cwd, administrator, f) ‘through this [pn] they are able to support one another, connect with one another and really address barriers around isolation for parents of children with disabilities.’ (ki2, project manager, ot, f) ‘through working with groups, chiefly the parents of children with disabilities, i have discovered that building networks of support is crucial to giving confidence to marginalised groups. for instance, in the case of parents of children with disabilities, decades of power have isolated them and silenced their voices.’ (atlantic fellows 2023:n.p.) the pn operates as an e-community of practice, ‘a remote network of parents with children with disabilities, as well as persons with disabilities … connected to one another … over the platform of whatsapp’ (ki2) (cf. sse 2020/2021 & 2021/ 2022).2 ‘we have also setup a mobile education and social connection platform for parents of kids with disabilities which we call the parent network’ (atlantic fellows 2021, 01:07). the choice to use a virtual platform was driven by a wish to be inclusive, ‘the network operates remotely as we have people or parents across south africa as we don’t want to leave anyone behind’ (ki1, parent of cwd, administrator, f). as noted by ki2 and supported by the sse annual impact report (2022 and 2023), the pn operates across all nine provinces of south africa. the network expanded from 14 parents in early 2019 to over 1200 by september 2023. figure 2 illustrates that as of september 2023, the western cape group comprised 203 parents, free state 58, northern cape 259, eastern cape 110, kwazulu-natal 73, gauteng 394, mpumalanga 57 and limpopo 52. figure 2: parent network growth per province. theme 3: roles in the parent network key informant 2 emphasised the importance of establishing a clear structure and defining specific roles within the pn to effectively operationalise the network: ‘we kind of were quite aware in the beginning that in order for this community care approach to work and in order to move towards the network being more sustainable over time we would really need leadership to develop from within the network. specific roles that needed to happen in terms of how information flows in the network, so how information comes from families and how it goes back into the network and back to families and so to do that, we needed a group of leaders of parents in the network and those have been our network parents.’ (ki2, project manager, ot, f) the specific roles included an advisory committee, network parents (the group of leaders mentioned by ki2), parent champions and advocacy partners (figure 3). these roles were intentionally designed to leverage parents’ strengths and implement the community care approach (sse annual impact report 2020 and 2021). figure 3: the conceptual model of the parent network. sub-theme 1: advisory committee at the inception of the pn, an advisory committee was established to co-design and later pilot the ltp tool. the committee ensured that parents’ voices were represented at the sse board level, thereby influencing decision-making processes. in 2020, the advisory committee dissolved as the network of parents became well-established. from that point onward, the network parents took on the responsibility of driving initiatives and shaping the network’s future (sse 2019 and 2020). sub-theme 2: network parents the network parents (either parents or caregivers of cwd) are at the heart of the pn. they act as leaders within the network. their roles have evolved organically over time in response to emerging needs, as described by key informant 2: ‘it has developed over time quite naturally and i think that that’s really something that makes the network quite special. it has had very organic growth and as the needs have changed and adapted or developed, we’ve been able to adapt the roles and we’ve been able to adapt the method in the way which the network works to meet the needs of the individual and of the whole.’ (ki2, project manager, ot, f) network parents facilitate the flow of information within the network. they play an instrumental role in gathering information from families without smartphones or good connectivity through door-to-door visits and relay it to whatsapp groups: ‘network parents conduct door-to-door visits which are a key enabler to connect with other parents, complete the ltp tool, share information about the network and therefore be the catalysts in the flow of information.’ (ki2, project manager, ot, f) network parents play a vital role in providing parents with essential information and ‘know-how’ to make informed decisions regarding the care and future of their children. they facilitate referrals when necessary. their ability to fulfil this role was developed through training provided by the sse team and the broader network, which will be discussed under the section ‘training all whatsapp groups’. key informant 2 explained: ‘so for instance if we do a session around say feeding in the network and that network parent visits a family and sees that the child is maybe not positioned correctly and they are aspirating while they are eating, that network parent will have the knowledge to say you know, it looks like your child is not seated safely and not swallowing and they are not eating safely. i think we need to do a referral to a speech therapist at the local clinic, or here is a different type of way that you can position your child that might be better to feed them in the meantime … [pn] make referrals to social, educational, and health services, and use the ltp tool to monitor the implementation of policies, also on behalf of those without phones or connectivity.’ (ki2, project manager, ot, f) network parents guide decisions based on the needs they identify within their provincial groups and through their observations in the field. for instance, they might notice that parents are unaware of their ability to access hospital transport. this issue is then discussed in their dedicated whatsapp group, after which the relevant information is shared across the provincial groups and the ‘training all’ whatsapp groups. their role in identifying needs and facilitating responses is crucial to the pn’s ability to respond appropriately. recently, network parents have taken the initiative to lead conversations within their provincial whatsapp groups. as key informant 2 explained: ‘network parents have volunteered additionally as provincial whatsapp volunteers, and their role is to support the provincial whatsapp groups and kind of get the conversation going among the provincial groups.’ (ki2, project manager, ot, f) by being visible in the field, network parents also play a pivotal role in driving the growth of the network: ‘through their work, they raise awareness of the parent network … network parent meets another parent at the local clinic, at the sassa offices, in the mall and tells them there is this network for parents with children with disabilities, you can join it … it is also really a big part of what the network parents do in doing door to doors and kind of identifying new families and then referring them to the network.’ (ki2, project manager, ot, f) including parents who are either not part of the pn or lack access to smartphones remains a priority, as the sse team is particularly aware of the connectivity challenges in rural south africa. network parents play a crucial role in bridging this gap by facilitating the flow of information to these families. they ensure that information extends beyond the formal network structure. as key informant 2 explained, ‘families who aren’t able to access the network through these groups benefit by doing door-to-door family support visits’ (ki2, project manager, ot, f). key informant 1 added: ‘different roles of our network groups, e.g., on the np group we get all the information of people and children we can’t reach as maybe those families are way too behind the technology model as this group goes to far as villages to try their best to bring them services that they can’t reach them.’ (ki1, parent of cwd, administrator, f) network parents are compensated for their time and receive a travel allowance to cover the costs of using their preferred mode of transport when visiting families within their geographical areas. they are also provided with mobile data to contact families for appointments, seek advice from the sse team or discuss any questions. additionally, they are supported with workshop materials, pn posters, sse t-shirts and identity cards (figure 4). as key informant 2 explained: ‘we were only really able to start providing 18 network parents with a volunteer stipend last year [2022]. before that, all the work that the network parents did, who are kind of the leaders in the network, was all on a volunteer basis.’ (ki2, project manager, ot, f) figure 4: the four components of the pn: whatsapp groups and the let’s talk parent tool. a parent who is a member of the pn can apply to become a network parent. applicants commit to conducting door-to-door visits within their districts, using the ltp tool with families, conducting research under guidance, remaining active in the provincial and ‘training all’ groups, and facilitating ltp community dialogues in their communities (sse annual impact report 2022 and 2023; van der westhuizen & visagie 2025). currently, 70 network parents operate across 31 districts in nine provinces. sub-theme 3: parent champions parent champions are parents who advocate for their own children and others. typically, most families in the pn play this role. network parents connect with parent champions and coordinate the information they provide. as parent champions gain confidence, they start identifying the topics they want to discuss or the training and support they need (sse annual impact report 2020 and 2021). theme 4: the operations of the parent network the essence of the pn comprises four interconnected components (figure 4). these are: provincial whatsapp chat groups where parents from the same geographical area connect. interprovincial whatsapp training groups for capacity building and sharing of information by professionals and others in the know. network parent whatsapp group. the ltp tool for monitoring policy implementation. the first three different whatsapp groups each address a particular need, as explained by key informant 1: ‘we have 3 different types of groups in the network, which are training all group: where all of our sessions [are] being held … the group that accommodate everyone. provincial groups: is where we add our parents in their different province so that they can know each other and build some friendship for themselves so that in future they will maybe go out on play dates with their children and plan their own awareness. the network parents group: this is one for the 70 parents who do the volunteering work for the network, those who do our research and door to door parties and obviously help the network to grow.’ (ki1, parent of cwd, administrator, f) sub-theme 1: provincial whatsapp groups the nine provincial whatsapp chat groups form the foundation of pn operations and serve as the initial point of contact for any parent joining the network (figure 5). whatsapp was chosen because of its widespread familiarity and ability to facilitate connections across time and place, while overcoming the limitations and expenses associated with physical travel. these groups enable parents to connect despite transport and financial barriers, as well as the challenges of caring for a child with disability, which often requires 24 hours a day, 7 days a week attention. whatsapp allows network parents to share updates with the entire pn and easily organise smaller discussion groups on topics important to them (sse annual impact report 2022 and 2023): ‘provincial group is where all the daily activities happen as we have all different things going on like they shared birthdays, awareness, love, cries and grief. that is where we feel the importance of this network as we get all the type of support we need there.’ (ki1, parent of cwd, administrator, f) figure 5: visual of the let’s talk parent and pillars available to monitor. as articulated by key informant 2, the provincial whatsapp chat groups are entirely parent-driven: ‘they are kind of led by parents themselves, so they are allowed to lead the conversation in any way they feel is beneficial to them and are a way for parents to access support, to access services, to access referrals amongst one another but also from support of the team.’ (ki2, project manager, ot, f) being parent-led, key informant 2 adds that the pn has: ‘dedicated provincial whatsapp volunteers who are parents themselves, who support those provincial groups with translations, because language can often be a complex element to consider as, just because parents are from the same province, does not mean they speak the same language.’ (ki2, project manager, ot, f) the groups have a particular onboarding procedure, in accordance with the popia act, as described by key informant 1: ‘so there is that whole process and then the parent gets added to both the provincial group and to the training all groups so they can be a part of that two aspects of the network. parents can also directly message [pn administrator] and request to be added. we have group rules which are shared in the groups so that parents kind of are orientated in terms of what are the rules and what they can and what they cannot expect in these groups. and then we have welcome orientation packs for the parents so when they are added they receive more information about what the parent network is. there are sessions we run more frequently in the network on how to use the let’s talk parents tool.’ (ki1, parent of cwd, administrator, f) sub-theme 2: interprovincial whatsapp training groups interprovincial whatsapp training groups operate as ‘training rooms’, which are opened twice monthly to offer training sessions. the training all whatsapp groups function across provinces, and financial support to attend is sometimes provided, depending on the availability of funds. key informant 2 explained: ‘we have parents from all provinces connected to one another and those we use bi-monthly for training sessions and those remain closed [outside of training sessions] to encourage conversation and engagement to happen on the provincial groups … dependent on funding through investors … there are periods when we are able to provide data for parents to training sessions.’ (ki2, project manager, ot, f) the training sessions focus on building capacity in various disability-related topics, including different types of disabilities, the social model of disability, advocacy skills and guidance on relevant legal and policy frameworks. facilitators are invited by the sse team and selected for their topic-specific expertise from both public and private organisations. key informant 1 (ki1) commented the following: ‘there’s session that happens in the group that helps us a lot to know more about different types of disabilities and we have guests that are professional who lead those sessions … we get all the most important/advice from our professionals that runs the session for our parents, the information that help us to know the way forward also what you can do while waiting at home for the medical assistance if your child/person is maybe having seizures we get all that kind of information from that group.’ (ki1, parent of cwd, administrator, f) the identification of training topics is driven by parents. conversations within the provincial groups and insights from network parents are closely monitored to track recurring questions and referrals. this approach helps identify topics that could have broader relevance and provide value to the entire pn, as described by key informant 2: ‘if in a provincial group we notice that a lot of parents are requesting information around how to position their child appropriately in a wheelchair or if they don’t have a device like an appropriate wheelchair, how can they position their child better for feeding for instance, then we will invite maybe a seating practitioner to come do a session around positioning, we might invite a speech therapist to do a session around feeding, and so we use those platforms for really kind of for educational purposes, for sharing knowledge, for skills building and then there are very strong elements of advocacy as well.’ (ki2, project manager, ot, f) the training all sessions became a cornerstone of the work of the pn and are widely shared with parents, even beyond the network. sub-theme 3: network parent whatsapp group the network parents have a dedicated group where they, as the leadership of the pn, connect to share information, ask advice from each other and support each other. the group provides a platform for discussions on practice, advocacy and the general operations of their work. the sse team uses this group to gather input from network parents on pn-related decisions and to obtain feedback from funding partners. sub-theme 4: let’s talk parents tool the ltp tool is the fourth component of pn operations (figure 5). it monitors the implementation of the wprpd (dsd 2016). the tool empowers parents to identify and select issues under each strategic pillar of the white paper where they believe policy implementation is lacking, serving as both an advocacy and policy monitoring tool (sse annual report 2022 and 2023). as key informant 1 explained: ‘the ltp i can say it’s the tool that monitor the barriers that we face everywhere we go like you went to the mall of your choice and you see there’s no parking for people with disability you take out your phone and open your app and record that barrier.’ (ki1, parent of cwd, administrator, f) initially, the ltp was designed as a google form. during the pilot phase, however, parents reported practical challenges, such as high data requirements. as one key informant explained: ‘the let’s talk parents tool actually started out a lot more simply, we trialled it first, as a google form that parents could complete … access to data and network is a serious barrier for families and so having something that is available offline was very important. already at that stage we were thinking about how we can make this more user-friendly for families.’ (ki2, project manager, ot, f) to address these challenges, various iterations were tested, including a ‘please call me’ service. however, a more sustainable solution was needed. to overcome data limitations and user challenges, the sse subscribed to andromo.com, a platform that enables the creation of android applications without requiring coding or programming expertise. this decision led to the use of andromo (figure 6). because andromo provides a customisable shell application, a linktree platform was created to host and present the ltp tool in an app format (figure 5). figure 6: let’s talk parent technological design. the ltp was eventually set up using kobo toolbox, a widely-used open-source platform for data collection, management and visualisation, particularly suited for research and social good (figure 6). as key informant 2 noted, ‘and eventually landed on some funding, getting it using a kobo tool which works like a link on our sse app’. kobo toolbox was selected because it operates offline, making it ideal for the context in which the ltp is used. as key informant 2 further explained, the …: ‘tool is available to use off-line so parents can, for instance if they don’t have access to a connection or network, they are able to submit the ltp off-line … we can confidently say that the parent can be in the middle of nowhere and submit a ltp, it’s not going to get lost and it’s going to come through to us.’ (ki2, project manager, ot, f) currently, the ltp tool is accessible through the sse application, which can be downloaded from the google play store, istore and huawei app gallery. it is available in five languages: english, afrikaans, isixhosa, isizulu and setswana (figure 5). this design was intentionally chosen to minimise setup costs, allowing the process to be managed in-house with limited technical support. additionally, it enables internal updates to the ltp or other content on the application, reducing dependency on external resources and avoiding time delays. the submissions from the ltp have been used for advocacy and reporting purposes, such as contributing to the shadow report to the united nations (un) in 2023 (sada 2023). discussion the results indicate that the pn and ltp provide a framework that can support people in using their voices to influence decisions that affect their lives, addressing barriers stemming from authoritarian power systems and ableism. empowering marginalised groups involved creating inclusive, emotionally safe environments where individuals could reclaim their voices, fostering self-representation, agency and respect for diverse perspectives. at the same time, these processes were shaped by persistent challenges such as digital literacy gaps, unequal access to connectivity and the significant effort required to sustain participation. in this context, collective social value may be generated when individuals are given platforms to share their experiences and knowledge. by recognising and validating their contributions, shifts in social participation and empowerment were observed, although these remain constrained by structural barriers. within pn and ltp, parents’ voices were positioned as valuable assets, influencing policy, building social capital, fostering self-efficacy and contributing to meaningful outcomes, thereby building what has been termed a ‘voice economy’. parent-led advocacy and empowerment models are identified as important drivers of disability inclusion, creating spaces for families to mobilise, build leadership and influence policy, while simultaneously facing the ongoing challenge of maintaining momentum in resource-limited contexts (anderson & bigby 2017; burke & hodapp 2016). by amplifying family voices and fostering mutual support, these models strengthen social capital and contribute to broader disability movements, though sustaining such efforts requires addressing structural inequities (curran & runswick-cole 2014; neely-barnes et al. 2010). through various roles, such as network parents and parent champions, the strengths of network members were harnessed to implement the community care approach. network parents played a catalytic role within the pn while also mediating challenges commonly faced in e-communities of practice, such as poor connectivity, lack of data and absence of smart devices (kirik & cetinkaya 2021; zhu & alamsyah 2022). while e-communities of practice expand opportunities for knowledge sharing and inclusive participation, they are equally marked by challenges of sustaining engagement and bridging digital divides (dubé, bourhis & jacob 2006; wenger, mcdermott & snyder 2002). network parents attempted to address these barriers by visiting parents without smartphones or connectivity and assisting them in accessing the pn using their devices. they also filtered information between the provinces and sse, guided parents in engaging in local languages within their provincial groups, and focused discussions on what was appropriate for a particular province (gujar 2021). digital technologies provided opportunities to amplify marginalised voices and facilitate participation (kirik & cetinkaya 2021; zhu & alamsyah 2022). the pn and ltp used digital tools to help address barriers to empowerment through capacity building and access to information. however, limitations related to connectivity, affordability and digital literacy continued to restrict access for some families. the pn and ltp partially addressed this barrier through their operational framework, though uneven digital infrastructure remained a challenge. similarly, the ltp’s capacity to store information allowed parents to access resources from the safety of their homes at their convenience, but ongoing support and training were often required. consequently, while capacity building and support were expanded beyond time-bound activities, sustaining equitable participation required continuous attention (ortiz et al. 2019; baraka 2024). the ltp’s offline functionality further mitigated some connectivity challenges, demonstrating potential in reducing barriers to voicelessness. other studies have emphasised the importance of offline functionality in bridging the technological divide (choung & manamela 2018; hillier 2018). employing a technological solution (i.e., andromo.com) that permits in-house design and allows for modifications as required by its users as their needs evolve within their environment has been valuable, though maintaining adaptability requires resources and technical support. the combination of innovation and technology available to not-for-profits (i.e., kobo toolbox) has made such adaptations feasible. conclusion and recommendations drawing on the findings, the following were identified for future applications: policy and governance the pn and ltp frameworks supported social justice, enabling parents to influence critical aspects of their lives and fostering personal transformation. by providing accessible, virtual platforms for engagement, these tools enabled parents of cwd to reclaim their voices and actively participate in shaping policies. this approach not only amplified marginalised voices but also reinforced the importance of voice empowerment in achieving social justice. recommendations policy developers and implementers should collaborate with social innovations like the pn and ltp to monitor the implementation of the wprpd, ensuring stakeholder feedback is incorporated into the outlined datasets. the pn model should be explored as a framework for empowering other marginalised groups, with the ltp tailored to different contexts and policy focuses to expand inclusive decision-making. platform design and accessibility the pn and ltp tools created transformative spaces, empowering parents’ voices by providing an accessible and supportive environment. these tools allowed parents to reclaim their voices, gain confidence and express their opinions without fear of judgement. the pn and ltp tools also successfully utilised digital technology to create supportive spaces for expression, thereby reducing social exclusion and driving positive change. recommendations the ltp should be made more accessible to parents by simplifying how they identify the policy areas they want to monitor. expand the roles of parents within provincial whatsapp groups, using local languages to enhance accessibility and inclusivity. research and future applications through voice empowerment, pwd and their families gained control, authority and confidence to make decisions and take actions that affect their lives. the pn and ltp fostered both personal and collective transformation, demonstrating the potential of digital innovation to amplify unheard voices and promote solidarity. recommendations explore the concept of ‘voice economy’ as a means to intentionally include the voices of marginalised groups. researchers and practitioners should investigate scaling the pn and ltp to other marginalised groups, focusing on building collaborative networks, enhancing capacity and influencing policy to reclaim unheard voices and promote social solidarity. undertake explorative case studies that document parents’ experiences of using the pn and ltp, highlighting how they overcome challenges, apply new knowledge, develop skills and build support networks through participation. limitations and challenges while the pn and ltp demonstrated strong potential, several challenges emerged. digital literacy barriers sometimes limited participation and engagement fatigue was noted among parents balancing multiple responsibilities. these constraints highlight the importance of ongoing support, capacity building and adaptation to sustain meaningful participation. acknowledgements this article is based on research originally conducted as part of erna van der westhuizen’s doctoral thesis titled ‘the role of an online parent network and the let’s talk parents tool in the lives of south african families of children with disabilities and its future contributions’, submitted to the division for disability and rehabilitation studies, department of global health, stellenbosch university in 2024. the thesis is currently unpublished and not publicly available. the thesis was supervised by surona visagie and co-supervised by michael stein. the co-supervisor, michael stein, was not involved in the preparation of this manuscript and was not listed as a co-author. the manuscript has been revised and adapted for journal publication. the author confirms that the content has not been previously published or disseminated and complies with ethical standards for original publication. the authors would like to thank michael stein. competing interests the author reported that they received funding from margaret mcnamara and ernest & ethel erikson funds, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions e.v.d.w. has conceptualised the study, collected and managed data collection, analysed the data, drafted and finalised the article. s.v. assisted with the conceptualisation of the study, provided input in data 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community-based training to promote mobility and participation for children with disabilities. 2. cf. shonaquip social enterprise (sse 2021). abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) prisha alakram-khelawon department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa sonti pilusa department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa natalie benjamin-damons department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation alakram-khelawon, p., pilusa, s. & benjamin-damons, n., 2025, ‘exploring the care pathway for neurological conditions in a gauteng rehabilitation hospital, south africa’, african journal of disability 14(0), a1726. https://doi.org/10.4102/ajod.v14i0.1726 original research exploring the care pathway for neurological conditions in a gauteng rehabilitation hospital, south africa prisha alakram-khelawon, sonti pilusa, natalie benjamin-damons received: 21 mar. 2025; accepted: 18 aug. 2025; published: 12 dec. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: people with neurological conditions resulting in disabilities face a multitude of challenges in their journey of care. existing evidence recommends exploring region-specific care pathways to understand the multi-faceted factors that influence the health outcomes of people with neurological conditions. objectives: to explore the care pathway for neurological conditions in a specialised rehabilitation hospital in gauteng, south africa. method: this study used an explorative qualitative design. semi-structured interviews were conducted with a purposeful sample of patients with neurological conditions and health professionals. all interviews were transcribed verbatim, and a framework analysis was used for data processing and interpretation. results: two overarching themes emerged: the lack of an integrated care pathway and the key role players along the care pathway. components in the care pathway continuum included the onset and emergency management, admission into an acute facility, waiting for admission into the rehabilitation hospital, inpatient and outpatient specialised rehabilitation care and community care. participants described role players in the care pathway. conclusion: this study describes a detailed care pathway for people with neurological conditions in the healthcare system. evidence suggests the lack of an integrated pathway for people with neurological conditions, especially in acute and community care settings. multiple key components and role players are recommended for an integrated care pathway. contribution: there is a need to develop an integrated care pathway for neurological conditions to minimise clinical risk and improve patient outcomes. keywords: care pathway; neurological; rehabilitation; heads of department; patient; people with disabilities; spinal cord impairment; stroke; multidisciplinary team. introduction worldwide, neurological conditions such as stroke and spinal cord impairment (sci), which often result in permanent disabilities, have increased (ding et al. 2022; huang et al. 2023). the global report on health equity shows a 16% prevalence of people with disabilities (pwds) and indicates an increase in global chronic diseases, which is related to neurological conditions such as stroke (world health organization [who] 2022). the south african census 2022 reported a 6% prevalence of moderate to severe disability using the united nations disability index and a 15.7% prevalence of pwd based on the broad definition of disability (stats sa 2023a, 2024). with the increasing global burden of neurological conditions related to the years lived with disability (yld), it is important to understand the care needs of people with neurological conditions (feigin et al. 2020; ferrari et al. 2024). people with neurological conditions related to disabilities experience multifaceted health challenges that require support throughout their lives. for example, in south africa, people with scis experience increased readmission rates for secondary health conditions and high mortality rates (madasa et al. 2020; mashola, olorunju & mothabeng 2019), while people with stroke experience a substantial risk of stroke recurrence and high mortality rates (flach et al. 2020; lekoubou et al. 2017). when considering these health challenges and inequalities experienced by pwd, a compromised quality of life seems inevitable (gordon, booysen & mbonigaba 2020; nizeyimana, joseph & phillips 2022a). to improve the overall quality of life, access to rehabilitation for people with neurological conditions such as stroke and sci remains crucial. rehabilitation is defined as a multimodal, patient-centred care pathway to optimise function and re-integrate a person back to their home, family, society and gainful employment over a continuum (maart et al. 2024; negrini et al. 2022). the health system in south africa shows significant gaps in rehabilitation (morris et al. 2021; visagie & swartz 2018) care despite the global rehabilitation agenda of 2030 (who 2017). rehabilitation 2030 aims to strengthen and integrate rehabilitation across the health sector. in south africa, rehabilitation care faces challenges such as limited accessibility and integration of rehabilitation services, a lack of assistive devices and rehabilitation consumables, compounded by a shortage of rehabilitation therapists (magaqa, ariana & polack 2021; tiwari, ned & chikte 2020). one key action of rehabilitation 2030 is to increase rehabilitation research for reliable data that inform decision-making for quality healthcare. there is a paucity of rehabilitation research on the care pathway for people with neurological conditions. the care pathway is defined as an individual’s integrated health journey over a continuum (gartner et al. 2022; wiest, gargaro & bayley 2023). gartner et al. (2022) postulate that key components of an integrated care pathway are patient and caregiver-centred approaches, defined roles and responsibilities of patients, health professionals or other stakeholders, management of the health services and a region-specific approach. integrated care pathways can improve health outcomes and health cost savings by (wiest et al. 2023) decreasing the length of hospital stay, readmission rates, complications and the time for a pwd to reach independence (lee et al. 2020; portelli tremont et al. 2022). there is a need to explore condition and region-specific care pathways for an in-depth understanding on how to manage pwd and improve their health outcomes in south africa. therefore, this study explored the care pathway for people with neurological conditions at a rehabilitation hospital in gauteng province. research methods and design research design an explorative qualitative design was used to describe the care pathway for neurological conditions in a rehabilitation hospital. study setting this study was conducted at the only 24-hour specialised public rehabilitation hospital providing physical rehabilitation services in gauteng province, as per the south african government, national health act: regulations relating to categories of hospitals, last approved in 2012 (legislation in government gazette: r185 no.35101). gauteng is the most populated urban region in south africa (stats sa 2023a), and an estimated 84% of the population in south africa access public healthcare (stats sa 2023b). professional health services at the rehabilitation hospital include doctors, nursing care, physiotherapy, occupational therapy, speech and language therapy, audiology, pharmacy, dietetics, social work and psychology. patients with neurological disabilities are referred to the rehabilitation hospital from all levels of public health care, private health facilities, family or caregiver referrals and from other provinces, as there is a shortage of specialised rehabilitation hospitals in south africa (louw et al. 2023). study participants purposive sampling was used to recruit study participants. the inpatient and outpatient registers showed that 98% of the patients admitted to the rehabilitation hospital had neurological conditions and the majority of these patients had sci or stroke. hence all eligible adult inpatients and outpatients with stroke and sci, who could participate in an interview process and share their lived experience, were invited to participate in our study. all heads of department (hods) at the rehabilitation hospital were included for their work experience and expert opinion. health professionals included doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, pharmacists, dietitians, social workers and psychologists. all participants were adults above 18 years. procedure semi-structured interviews were conducted with all participants using interview guides with opened-ended questions similar to the objectives of the study. the patient interview guide differed slightly when patients’ understanding and language preferences were considered; for example, the interview guide was translated into local languages that could be easily understood by patients. however, all participants (patients and hods) were asked to describe their experiences and views on the care pathway for neurological conditions. demographic data collected included age, gender and other socio-economic data. the patient interview guide also included clinical data for people with neurological conditions such as the type of neurological condition, assistive devices required, duration of the disability, type of referral facility and waiting times to access rehabilitation care. the purpose of the study was explained to participants in a language that they could understand, and informed consent was obtained. a research assistant was available for language translation and to help the first author with other administrative tasks. data collection was via audio-recorded face-to-face semi-structured interviews. two pilot interviews were conducted, and the results were deliberated with the co-authors. a procedural strategy was implemented for subsequent interviews without material changes to the interview guide. the interviews took an average of 34 min each and were conducted in a private room at the hospital. interviews were conducted until data saturation was reached; this was verified by two co-authors. a field journal was implemented, wherein all research processes and schedules were documented for research audit requirements. data analysis the recordings were transcribed verbatim by an independent transcription service. these transcriptions were verified by the first author and the research assistant who also checked the accuracy of the interviews that required english translation from a local african language. a framework analysis (kiger & varpio 2020) was used for systematic data handling. the maxqda 24 (analytics pro) software was used to code the transcripts and develop themes. familiarisation and review commenced during data collection. continuous re-reading and familiarisation of the data with draft coding were performed inductively. the first author and co-authors analysed and separately coded the three transcripts inductively. the results were discussed, and a coding framework was developed to code the remaining transcripts. similar codes were categorised into broader categories, and these as well as the code book were verified by the two co-authors at each stage. data source triangulation included data from inpatients, outpatients and hod from nine different health professions and all clinical departments at the rehabilitation hospital. methodological rigour four-dimensional methodological rigour criterion of trustworthiness, reliability, verifiability and transferability (forero et al. 2018) was used. the authors and research assistants were professional rehabilitation therapists with experience in disability management. the first author and research assistant were trained in qualitative research at this university. in addition, the first author orientated the research assistant to the study and data collection materials before commencing data collection. during data analysis, a code-recode procedure was implemented, wherein coding of a segment of data was performed in various separate sessions, and the results were juxtaposed between the first author and the two co-authors. when considering reflexivity, although the first author worked at the rehabilitation hospital, she was not involved in clinical treatment and did not know the patient participants prior to the interview. however, she did know the hod participants and therefore reassured them that she was a physiotherapist conducting a post-graduate study independent of her role at the hospital. voluntary consent to the interview was witnessed, and each hod also had a choice of not participating in the interview or being interviewed by the research assistant without prejudice. the first author remained neutral, listened attentively and allowed hods to present comprehensive views. she was transparent about her role in the study throughout the process and reassured the hods that their information would remain confidential and safe. the co-authors participated in peer review and triangulation of data at each stage. trustworthiness was practiced where the authors’ personal or professional views were set aside to prevent bias at each stage. a research diary and audit trail were implemented, and hard copies of raw data are available on request. data were extracted to ensure methodological rigour, as set out in the research design and procedure. ethical considerations the university of the witwatersrand medical human research ethics committee granted approval for the study (m220828). the gauteng department of health granted permission to conduct the study at the rehabilitation hospital, and it was registered on the national health research data base (gp_202211_037). results the results section details participant demographics, overarching themes, categories, sub-categories with supporting quotations and an illustrated summary of the care pathway. demographics a total of 41 participants, 26 patients and 15 hods were interviewed. the hod demographics were captured with an emphasis on years of experience and representation of hods from all hospital health professions (table 1). table 1: demographics information for heads of department. the patients with neurological conditions included 20 patients with sci and 6 patients with stroke; 11 were outpatients and 15 were inpatients (table 2). table 2: demographic information for patients themes and categories in the care pathway in the care pathway for neurological conditions, two overarching themes emerged with various care pathway categories and sub-categories (table 3). table 3: summary of themes and categories in the care pathway. theme 1: lack of an integrated care pathway from the onset, patients and hods reported gaps in the neurological care pathway throughout the continuum. these health system challenges include overall inadequate quality of care, limited health resources, limited rehabilitation services and a lack of accessible and integrated health services throughout the care pathway: ‘… it’ is my wheelchair that needed some repairs last month. when i came here, they told me that the size is not available …’ (p4, sci, 26-years-old) ‘… if you don’t have a ct scanner working, then you have to be transferred to another hospital, which also delays the progress … and in a stroke patient, they actually can get medication done if it’s within the first six hours but unfortunately, not all patients get to the hospital in that time …’ (p31, jane, 44-years-old) the participants described the care pathway for people with neurological conditions, such as stroke and sci. this included the onset and emergency management of neurological conditions, acute care, waiting for referral and admission to the rehabilitation hospital, inpatient and outpatient rehabilitation care and community care. onset and emergency management of the neurological condition: the onset and emergency management of neurological conditions is primarily based on the patient experience. patients described symptoms experienced prior to onset, their situational experience at full onset and delays with the ambulance services. five patients reported symptoms of pain and weakness before the onset of the neurological condition: ‘… in march, my right leg went weak and, i had pain in my back, and i was scared to go to the hospital so, by 13th december my second leg went weak … then i went to the hospital.’ (p2, sci, 41-years-old) ‘i got sick when i was at tembisa and then i went home to mpumalanga. but they did not admit me there when i went to the hospital. they didn’t see anything wrong.’ (p9, sci, 27-years-old) patients reported the full onset of their condition as a traumatic and emotional event: ‘… when the car accident happened, i just found myself down … so i just ran to take my kids. after that, a man came to help me with my kids. he said that i must lay down on the ground …’ (p16, sci, 34-years-old) ‘i was trying to get out of the bath, that is when my left foot and my hand became numb … and then i quickly i took out the prop [drain stopper] in the bathtub, because … the way i was lying, i might drown.’ (p11, stroke, 42-years-old) because of delays in ambulance services, 16 patients used a car to be transported to the health facility, including six patients with acute spinal cord injuries: ‘… we tried calling the ambulance but unfortunately it took time …’ (p13, sci, 24-years-old) ‘they took me to the hospital because of the ambulance was taking a long time to come.’ (p11, stroke, 42-years-old) care at the initial or acute health facilities: patients reported that they first consulted with primary health care or sub-acute care prior to admission or referral to an acute care facility patients reported consulting for care at clinics or lower-level hospitals at onset: ‘when the doctor checked me at the clinic, my blood pressure was high. so, the following day they took me to the other hospital.’ (p1, stroke, 50-years-old) ‘… after the stabbing, the community members … they took me to the local clinic … after a while, the ambulance came, and it took me to a hospital … then at a later time, i was also referred to another hospital.’ (p4, sci, 26-years-old) patients described their experience in the emergency unit, having medical tests, admission to intensive care unit (icu), high care or a ward and limited rehabilitation services in the acute facility: ‘… i was in icu … i moved to the ward … i spent maybe six months in hospital, because of the bedsore and operation …’ (p7, sci, 32-years-old) ‘… i just sit on the bed all day, doing nothing … i saw the physiotherapist and the occupational therapist, maybe once or twice a week …’ (p12, stroke, 42-years-old) referral to specialised rehabilitation care: the patients explained that a health professional completed the rehabilitation referral forms and made relevant transport arrangements for admission. there were delays in admission to specialised rehabilitation care, and five patients reported going home while waiting. the patient was referred to specialised rehabilitation care with noted delays: ‘… my form for admission to the rehab hospital was to be completed on tuesday … the physiotherapist did try to help … we went to the nurses, and they said they were busy … i asked the night shift staff to help complete the form, but they said that the day shift staff must fill up the form … so there was a delay to be admitted at the rehab hospital.’ (p17, stroke, 45-years-old) ‘… there was a queue of people who were supposed to be admitted here, so i had to wait.’ (p18, stroke, 52-years-old) some patients were discharged while waiting for admission to rehabilitation care. they were unable to perform self-care and had an elevated level of dependency on their caregiver: ‘… they are finding me space here [rehabilitation hospital] … so, they will take me out for a week and take me home. and then when there is space, they will call …’ (p1, stroke, 50-years-old) ‘… i have never been paralysed or anything before. so, when i got home from hospital … my mother used to do everything for me and i am 41 years, so it was quite difficult for my mother to clean me …’ (p2, sci, 41-years-old) specialised rehabilitation inpatient care: the inpatient care pathway in the rehabilitation hospital included screening, where if the patient met all the criteria, they were admitted. if not, they were returned to the referring facility. following admission, the patients were assessed by health professionals and resume the daily rehabilitation programme. patients described the rehabilitation programme, although the hods provided more detail. part of the rehabilitation programme included meetings with the patient and multidisciplinary team (mdt). the aim of the meeting was to set functional goals to be achieved by discharge. caregivers were invited for education and training: ‘… in the family meeting the patients’ families are invited, and the role of each team member is explained, and goal setting are set at that time with the patient … then towards the end of their rehab we will still call another family meeting … on how far we have reached …’ (p34, lira, 41-years-old) ‘… family meetings for the patients, i mean the family will come with the patient and the whole team will also discuss the goals and expectations …’ (p36, busi, 33-years-old) activities for re-integration into the home, community and work are included in the rehabilitation programme and described in detail by the hods: ‘… we also take our patients to other events in the community … the sports field … the zoo … we even bring them to the community centre so that they should be aware that we do have persons with disability …’ (p40, sipho, 54-years-old) ‘… occupational therapists have very lovely patient groups … all focused on reintegration.’ (p39, eva, 37-years-old) the patients were allowed weekend pass outs in preparation for hospital discharge: ‘… i got pass out … it was very different to be at home because here the hospital beds, they have railings, and you know the services are wheelchair friendly but at home i had to adjust …’ (p2, sci, 41-years-old) ‘… i was not trained for the home setting, so … i was not coping …’ (p25, sci, 49-years-old) the mdt plans and coordinates patients’ discharge from the rehabilitation hospital: ‘… the neuro patients, most of the time they are given the referral letter to the local clinic … we give them discharge summary … the spinal patients, they are given a return date … they come to the hospital …’ (p27, siphe, 57-years-old) ‘… we involve our patients in preparation for discharge … patients will be given a discharge summary …’ (p40, sipho, 54-years-old) specialised rehabilitation outpatient care: outpatient care was described by the patients; however, more details were provided by the hods. the outpatient department administration includes patient registration, file retrieval and appointment management. nursing care includes vital assessment, assisting doctors during consultation, patient education, wound care and incontinence management. the outpatient pharmacy issues medication and medical consumables such as catheters and wound dressings. outpatient consultations with other rehabilitation health professionals have also been reported: ‘… the doctor will be assessing, asking the patient how he is coping … maybe the patient is having more spasms, then maybe the doctor will increase the treatment.’ (p28, mary, 42-years-old) ‘… so, we [pharmacy] give them the catheters, the dry dispensary items as needed and also the medication ….’ (p31, jane, 44-years-old) ‘… our outpatient services … occupational therapy or physiotherapy … they come for the wheelchairs … or maybe wheelchair cushions …’ (p34, lira, 41-years-old) community care includes primary health care services, community services and support: ‘… we refer the patient to the nearest clinic …’ (p29, cath, 55-years-old). ‘… the home that i am in currently is a non-profit organisation … they just provide the place, and you must come with your own helper … i also participated in a learnership program … somewhere they are looking for people with disability …’ (p7, sci, 32-years-old) ‘… you can just give health education to help them prevent … we educate the community at large about pharmacy and healthy living in general.’ (p37, osa, 40-years-old) theme 2: role players in the care pathway participants explained that the role players in the care pathway included patients, family, caregivers, health employees, other hospital patients, the government, other organisations such as disability stakeholders and non-profit organisations, the health system and the community (table 4). the patient is present throughout the care pathway and is assisted by family or caregivers. health employees include qualified health professionals, students, porters and other hospital support staff. participants reported that interaction with other patients positively influenced their care pathway experience. the community was also described in the patients journey at the onset of the neurological condition and after discharge. government departments provided various public services in the care pathway. other organisations for pwd included non-profit organisations and private stakeholders. the health system was identified as a care pathway role player, responsible for the operational management of health services. table 4: role players in the care pathway. results summary a summary of the results is presented in figure 1 as an illustration of the care pathway components and role-players throughout the continuum of care required. figure 1: summary of the care pathway for neurological conditions. discussion this study explored the care pathway for people with neurological conditions. the care pathway description included various components and role players from the onset, emergency management, acute care, rehabilitation care and community care. to the best of our knowledge, this is the first study to explore the care pathway continuum for neurological disabilities and provides a situational analysis on current practice in south africa. the findings suggest a lack of an integrated care pathway to guide the holistic and continuous care of people with neurological conditions, such as stroke and sci. maseko, adams and myezwa (2024), in a study on rehabilitation service models in primary health care, similarly found a lack of integrated rehabilitation services and gaps in the referral between levels of care. this highlights poor access to health care, limited rehabilitation services and inequities in socio-economic factors as found in prior studies (maart et al. 2024; morris et al. 2021). although a stroke care pathway was outlined previously by grimmer et al. (2018) and perry et al. (2018), our study goes further to describe an in-depth care pathway as experienced by patients with neurological conditions over a continuum, while providing valuable input from various hods. the care pathway started from the onset, emergency management, acute care, rehabilitation care, as well as community care, and some of these care pathway components and role players are described in other studies. for example, the model of care for traumatic sci, described by wiest et al. (2023), placed emphasis on the use of the mdt, early intervention and continuous care. gartner et al. (2022) identified patient and caregiver centric care, positioning of actors and operational management of health systems for an integrated pathway. our study is unique as it provides a comprehensive description of specialised rehabilitation care, in the care pathway for neurological conditions in a south african health system amid the high quadruple burden of disease (pillay-van wyk et al. 2016). at the start of the care pathway, patients recounted the initial and emergency management. patients described symptoms experienced prior to full onset, where it was found that while some patients delayed health consultation because of lack of health education. other patients did consult with health professionals, but there was delayed diagnosis or treatment, and their condition deteriorated over time. current evidence suggests that early diagnosis and treatment can prevent or minimise the severity of the functional disability (badhiwala et al. 2022; galloway & parker 2018). community education and patient-centred care are thus recommended for early identification of spinal cord infection and stroke (khalil & lahoud 2020; lurie et al. 2021). at full onset, 16 (62%) of patients used a car to be transported to the health facility because of ambulance delays. ambulance delays were also outlined in a previous study (owolabi et al. 2023). alarmingly, eight (50%) patients with traumatic spinal cord injuries were transported from the scene of injury via car and not by emergency ambulance. stabilisation of the spine is crucial in minimising neurological fallout (linsler & reyes medina 2021; shank, walters & hadley 2017). when considering the onset and emergency management of neurological conditions, the priority is prevention, preservation of neurological function and minimising complications to reduce healthcare costs (battistuzzo et al. 2016; bharatan et al. 2021). the urgent responsiveness of the emergency ambulance service is recommended for an integrated care pathway. at onset and emergency management of neurological conditions, patients described their experience as traumatic and emotional when they reflected on how their disability had impacted their lives. this experiential recommendation for psychosocial support is also supported by other studies (brazeau & davis 2018; cao et al. 2017). within the acute setting, patients’ experiences included the emergency department, icu, high care and wards. common threads that emerged were delays in surgery, sub-standard care by health professionals, nil or limited treatment received from rehabilitation health professionals and delays in referral to the rehabilitation hospital. there is little evidence of patient and family-centred care as recommended by havana et al. (2023) or the implementation of rehabilitation protocols to optimise patient outcomes (maciel barbosa et al. 2023). patients reported limitations and delays in receiving physiotherapy and occupational therapy at acute care, whereas existing studies confirm that these primary rehabilitation therapies improve functional outcomes in people with neurological conditions (duan et al. 2021; rahayu et al. 2020). referral to the specialised rehabilitation hospital was delayed, and the average waiting period for admission was 17 days. delays were attributed to procrastination by nurses in completing referral forms and organising transport. rehabilitation should commence early, after stabilisation of a sci or stroke, to achieve better functional outcomes (herzer et al. 2016; otokita et al. 2021). five patients were discharged while waiting for admission to the rehabilitation hospital. these patients’ experience of homestay before admission to specialised rehabilitation care suggests challenges because of a gross lack of their own functional independence and the elevated level of dependency on the caregiver. similar homestay challenges were described by govender et al. (2019) and moran, barclay and lannin (2024), who recommended in-hospital rehabilitation care prior to discharge. the authors further recommend that the current referral pathway be reviewed with consideration of an electronic referral system for a seamless flow of patients between health facilities (fernández-méndez et al. 2020). at the specialised hospital, there was evidence of more integrated (rohwer et al. 2023) care, that is, patientand family-centred care, and programmes to improve functionality and re-integration (rohwer et al. 2023). the mdt consisted of health professionals, as outlined in the model of teamwork by langhammer et al. (2017). patient goals were monitored over time with considerations of the effectiveness of goal setting (crawford et al. 2022; olaleye & agoro 2024), and family meetings aimed to educate the caregivers. re-integration activities included home pass outs, social outings, sports programmes and vocational rehabilitation (becker et al. 2022; walsh et al. 2015). the care pathway at the rehabilitation hospital suggests that patients experienced various secondary and related conditions (cao, dipiro & krause 2020; richardson et al. 2021). therefore, specialised services are recommended for incontinence care, wound care, the management of pain and spasms throughout the care pathway. the care pathway at the rehabilitation hospital showed deliberate planning to allow adjustment to the home and community (moran et al. 2024). however, the experiential evidence suggests major gaps in the care pathway with limited community care in primary health care, community services and support for pwd. participants recommended more resources in community care in the form of primary health care rehabilitation services, care facilities for pwd, public education on health prevention and disability awareness in community care (magaqa et al. 2021; nizeyimana et al. 2022b). evidence identifies patients, family or caregivers, health employees, other patients, government departments, organisations that support pwd, the community and the health system as key role players in the care pathway. gartner et al. (2022) identified similar players; however, their roles in the care pathway differed and were more region-specific. for example, gartner et al. did not identify peer support and the role of other patients. other patients positively influenced the care pathway as they provide physical assistance, informal motivation and formal peer support sessions, which improved their participation and disposition (magasi & papadimitriou 2022). in addition, at the rehabilitation hospital, patient and family-centred care was evident in goal setting, family meetings, re-integration activities and discharge planning, which facilitated patient autonomy and an individualised care pathway (aubert, kletz & sardas 2023; cameron 2021). health system employees and services were also key role players that influenced the care pathway. patient interviews suggested that the mdt in the rehabilitation care pathway was a positive experience (kinoshita, abo & okamoto 2020; portelli tremont et al. 2022). however, health professionals’ poor attitudes were reported throughout the care pathway, especially in acute care (wong et al. 2021; zeydi et al. 2022). participants reported that government departments provided limited community services and support for pwd. although social disability grants applications were aimed at assisting pwd with their increased health expenses, caregiver obligations and challenges of unemployment post-disability, the approval of these grants was a prolonged process and did not cover all expenses (govender et al. 2015). other support organisations such as non-profit organisations for pwd provided limited support services such as skills training and learnership programmes, making overall integration difficult for pwd (dorstyn et al. 2023). accessible transport for pwd was also challenging throughout the care pathway (pacheco barzallo, oña & gemperli 2021), compounding the overall lack of community reintegration (ahmed et al. 2018; nizeyimana, joseph & phillips 2022b). therefore, it is recommended that the government establishes a defined package of community care for pwd using multisectoral collaboration for an integrated care pathway. maart et al. (2024) highlighted the need for key policy changes to facilitate equitable rehabilitation services and resources at all levels of care. conclusion our study details the care pathway for patients with neurological conditions over a continuum. the multiple key role players in the care pathway were patients, family, caregivers, health employees, other patients, government departments, organisations that support pwd, the community and the health system. evidence suggests an overall lack of an integrated care pathway for neurological conditions, especially in acute and community care. this is concerning when considering the burden of disease in south africa (bradshaw et al. 2019; gbd 2021 2024). for a more integrated care pathway at all levels of care, the authors recommend a defined package of care for neurological conditions using the collaboration of key components and role players identified in this study. limitations the patient participants were recruited from those accessing services at the gauteng rehabilitation hospital, as this was part of a larger sequential multi-method study. although this gauteng rehabilitation hospital receives patients from all levels of care, throughout gauteng province, a future study can be undertaken at collective health facilities or in the community. a larger range of neurological conditions, beyond stroke and sci, should be included in future studies. implication for practice there is a need to develop an integrated care pathway for neurological conditions to minimise clinical risk and improve patient outcomes. implications for key health service areas include preventative care and early diagnosis prior to full onset of the neurological condition, alleviating delays or limited access to emergency ambulance services. there is a need to provide access to rehabilitation care throughout the care pathway without delay, as well as specific services for pwd in primary health care and for community integration. implementation of care packages and protocols for neurological conditions related to disabilities is required throughout the care pathway. acknowledgements the authors acknowledge the patients and heads of department that consented to be interviewed for the research study and provided comprehensive feedback. this article is based on research originally conducted as part of prisha alakram-khelawon’s doctoral thesis titled ‘developing a health systems risk framework for neurological conditions in a gauteng rehabilitation hospital: a sequential multi method approach’, submitted to the faculty of health science, physiotherapy, university of witwatersrand in 2022. this thesis is currently unpublished and not publicly available. the thesis is supervised by natalie benjamin-damons and sonti pilusa. the manuscript has been revised and adapted for publication. the author confirms that the content has not been previously published or disseminated and complies with ethical standards for original publication. competing interests the authors reported that they received funding from wits university and the south african society of physiotherapy, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. credit authorship contribution prisha alakram-khelawon: conceptualisation, methodology, formal analysis, investigation, writing of the original draft, visualisation, project administration, software usage, data management, resource management, writing, fund acquisition. natalie benjamin-damons: triangulation of data, validation, writing review, editing. sonti pilusa: piloting, triangulation of data, validation, writing review, editing. all authors reviewed this article, contributed to the discussion of results, approve the final version for publication and are accountable for the integrity of its findings. funding information this part of the doctoral study was supported by the university of the witwatersrand, health sciences, faculty research committee, individual research grants, student number 2619480 and the south africa society of physiotherapy, grant number rf2023/02/06. data availability raw data, unique code identifiers, consent forms, audio recordings, transcriptions, original copies of figures and tables, maxqda software projects with coding, code books, among others, are available and can be shared electronically on request as a research audit trail was implemented in the study. the data sharing procedure will follow the governing prescripts of the university of the witwatersrand. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect 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africa ensa johnson centre for augmentative and alternative communication, university of pretoria, pretoria, south africa karen tewson national prosecuting authority, pretoria, south africa joan van niekerk private, durban, south africa citation white, r.m., bornman, j., johnson, e., tewson, k. & van niekerk, j., 2020, ‘transformative equality: court accommodations for south african citizens with severe communication disabilities’, african journal of disability 9(0), a651. https://doi.org/10.4102/ajod.v9i0.651 original research transformative equality: court accommodations for south african citizens with severe communication disabilities robyn m. white, juan bornman, ensa johnson, karen tewson, joan van niekerk received: 02 june 2019; accepted: 20 jan. 2020; published: 01 apr. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: persons with disabilities are generally at greater risk of experiencing violence than their peers without a disability. within the sphere of disability, individuals with severe communication disabilities are particularly vulnerable and have an increased risk of being a victim of abuse or violence and typically turn to their country’s criminal justice system to seek justice. unfortunately, victims with disabilities are often denied fair and equal treatment before the court. transformative equality should be pursued when identifying accommodations in court for persons with communication disabilities, as the aim should be to enable such individuals to participate equally in court, without barriers and discrimination. objectives: this research aimed to identify court accommodations recommended by legal experts, which could assist individuals with severe communication disabilities in the south african court. method: a qualitative design was used to conduct a discussion with a panel of legal experts. results: using article 13 (access to justice) of the convention on the rights of persons with disabilities (crpd) as a human rights framework, four themes were identified: equality, accommodations, participation and training of professionals. conclusion: foreign and national law clearly prohibits discrimination against persons with communication disabilities because of their disability and state that they should be given fair and equal access to the court system. for transformative equality to be achieved, certain rules and laws need to be changed to include specific accommodations for persons with communication disabilities so that they may be enabled to participate effectively in court in the criminal justice system. keywords: communication disability; access to justice; human rights; south africa; court accommodations. introduction and background persons with disabilities are at greater risk of experiencing violence than their peers without a disability. globally, children with disabilities are three to four times more likely to experience violence than their peers without disability (world health organization 2015). recently, a south african study also estimated that children with disabilities were 1.5 and 2.1 times more at risk of sexual abuse than their peers without a disability (artz et al. 2016). in an american study that compared 9086 women with and without a disability, results showed that 39% of the women who had been raped in the 12 months preceding the survey had a disability at the time of the rape (basile, breiding & smith 2016). another american study that reported on 21 615 respondents and their victimisation found that 26.6% of women with disabilities reported sexual violence compared with 12.4% of women without disabilities (mitra, mouradian & diamond 2011). this trend was also observed in american men, as 13.9% of men with disabilities reported sexual violence compared with 3.7% of men without disabilities (mitra et al. 2011). within the sphere of disability, individuals with severe communication disabilities are particularly vulnerable and have an increased risk of becoming victims of abuse (bornman, bryen, kershaw & ledwabe 2011). this may be because of the fact that they are unable to shout or call for help, or because perpetrators often seek out vulnerable individuals who they perceive as being unable to verbalise their victimisation to family members or key legal role players such as the police and court officials (white, bornman & johnson 2015). for example, in a systematic review of 21 557 adults with disabilities, the prevalence of recent violence was 24.3% in persons with mental illnesses, 6.1% in those with intellectual impairments and 3.2% in those with non-specific impairments (hughes et al. 2012). in another meta-analysis, from a total of 14 721 children with disabilities, the prevalence of recent violence was 26.7% for combined violence, 20.4% for physical violence and 13.7% for sexual violence (jones et al. 2012). typically, persons without disabilities who were victims of violence or crime turn to their country’s criminal justice system to seek justice by reporting the crime to the police and testifying in a court against the accused perpetrator(s). this same process should be available to persons with disabilities (white & msipa 2018). however, persons with disabilities are often denied fair and equal treatment before the courts (flynn 2013). when persons with communication disabilities try to report their victimisation, the police – through ignorance of the disability – may often mistakenly decide that the victim will not meet the legal requirements of being a competent witness in court, and hence, they fail to proceed appropriately and lawfully (archer & hurley 2013; viljoen 2018). equally important, offenders with intellectual and mental disabilities may also struggle with communication challenges, which could have a negative impact on their pursuit of access to justice (capri et al. 2018). offenders with communication disabilities are also vulnerable to exploitation and being influenced and professionals in the court system should be aware of the vulnerabilities of this population (capri et al. 2018). legal representatives of both victims and perpetrators must be able to respond appropriately to maintain the fairness and dignity of the court system (salekin, olley & hedge 2010). nonetheless, a comprehensive focus on perpetrators is beyond the scope of this study. the convention on the elimination of all forms of discrimination against women (cedaw) jurisprudence is of use to understand equality and non-discrimination obligations in conditions of systemic power inequality (e.g. the court system) (united nations 1988). the cedaw committee identified three types of obligations: formal equality (equal treatment as a matter of law), substantive equality (measures to equalise the enjoyment of human rights) and transformative equality (measures to remove the causes of inequality) (minkowitz 2017). formal equality is needed to have equal status as members of society, substantive equality is needed to proactively redistribute power and resources, and transformative equality is needed to transform opportunities, institutions and systems so that they are no longer grounded in historically determined paradigms of power (minkowitz 2017). for the purpose of this article, the focus will be on transformative equality. transformative equality recognises the need to change rules and laws to include different perspectives and not only dominant views and experiences (goldschmidt 2017). as such, it targets certain structures and systems (including the court system) for change through introducing a variety of positive measures for persons with disabilities (degener 2016). an international rights treaty that emphasises transformative equality for persons with disabilities is the convention on the rights of persons with disabilities (crpd) (united nations 2006). the crpd was inspired by international treaties to promote and support the human and legal rights of all persons with disabilities (united nations 2006). to date, this treaty has been signed and ratified by 46 african counties including south africa, who ratified it in 2007. goldschmidt (2017) highlights the five principles of the crpd which are equality, accessibility, autonomy, participation and inclusion. furthermore, these principles of the crpd reflect the four dimensions of substantive equality which are redressing disadvantage (the redistributive dimension); addressing stigma, stereotyping, prejudice and violence (the recognition dimension); facilitating voice and participation (the participative dimension); and accommodating difference, including through structural change (the transformative dimension) (fredman 2005). article 13 of the crpd specifically reports on ‘access to justice’ and states that: [a]ll states parties shall ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings. (united nations 2006:11) the provision of procedural and age-appropriate accommodations is distinguishable from the term ‘reasonable accommodation’ in that procedural accommodations are not limited by disproportionality (committee on the rights of persons with disabilities 2018). ‘reasonable accommodations’ can be defined as appropriate modifications and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment on an equal basis with others, of all human rights (united nations 2006). procedural accommodation is the recognition of different communication methods of persons with communication disabilities to be able to participate in court. age-appropriate accommodations may consist of providing information about available mechanisms to bring complaints forward and using age-appropriate and simple language (committee on the rights of persons with disabilities 2018). article 13 further states that: [i]n order to help to ensure effective access to justice for persons with disabilities, states parties shall promote appropriate training for those working in the field of administration of justice. (united nations 2006:11) in addition, the protocol to the african charter on human and peoples’ rights on the rights of persons with disabilities in africa was adopted in 2018 with south africa being one of the signatories. in this protocol, article 13 addresses the ‘right to access justice’ and also highlights that state parties should ensure that persons with disabilities have access to justice on an equal basis with others, including through the provision of appropriate (age and gender) and procedural accommodations (african union 2018). in principle, south africa has passed the relevant legislation that specifically accommodates victims with disabilities who need to access the court system and that allows equal participation in all legal proceedings. for example, section 9 of the south african constitution foregrounds equality and states that ‘[e]veryone is equal before the law and has the right to equal protection and benefit of the law, including persons with disabilities’. the promotion of equality and prevention of unfair discrimination act 4 of 2000 likewise emphasises that no one should be discriminated against on the ground of disability and underscores that ‘failing to eliminate obstacles that unfairly limit or restrict persons with disabilities from enjoying equal opportunities or failing to take steps to reasonably accommodate the needs of such persons’ is unconstitutional. persons with a communication disability may therefore not be discriminated against in a court of law because of their inability to communicate, and key role players in the court system should provide court accommodations to assist such individuals to be able to communicate and testify in court (the constitution of the republic of south africa, 1996). despite existing foreign and national legislation, persons with communication disabilities and their families still find it difficult and overwhelming to access and participate effectively in the criminal justice system, irrespective of being a witness or an alleged perpetrator (bornman et al. 2016). this could be because of the limited and constrained resources, accommodations and support offered to persons with communication disabilities who need to access the court system (fitzsimons 2016). flynn (2016) highlights three distinct inaccessible features in the court system that unfairly affect persons with disabilities: (1) the physical infrastructure that refers to architectural features such as staircases instead of ramps that act as environmental barriers; (2) procedural barriers that refer to when persons with disabilities cannot understand the court procedures and communicate effectively with the key role players in the court system; and (3) evidentiary barriers that refer to non-adapted rules of evidence and procedures to facilitate effective participation of persons with communication disabilities as witnesses. in an attempt to overcome physical barriers, south african law emphasises that physical accommodations should be provided to a person with a communication disability as highlighted in the criminal procedure act 51 of 1977 (cpa), which states that upon application by the state and in accordance with the provisions of the relevant sections in the cpa, such witnesses may testify in a room equipped with a closed-circuit television system. south african law further provides for the appointment of an intermediary for a person with a communication disability, as highlighted in the criminal law (sexual offences and related matters) amendment act 32 of 2007. it is stated that: [w]henever criminal proceedings are pending before any court and it appears to such court that it would expose any witness under the biological or mental age of eighteen years to undue mental stress or suffering if he or she testifies at such proceedings, the court may, subject to subsection (4), appoint a competent person as an intermediary in order to enable such witness to give his or her evidence through that intermediary. another procedural accommodation mentioned in the cpa relates to language accommodations, as it is recommended that the appointed intermediary for persons with communication disabilities should be conversant with the language of the witness. the use of sign language (and a qualified sign language interpreter), as well as other means of communication methods, should be provided for. in the cpa, section 161(2) states that the expression ‘viva voce’ shall, in the case of a ‘deaf and dumb witness’ (terminology used in the act), include sign language and, in the case of a witness younger than 18 years (including a mental age below 18 years), include demonstrations, using anatomical dolls, gestures or any other form of non-verbal expression. furthermore, the children’s act 38 of 2005 (which applies to all children, including victims with communication disabilities who are younger than 18 years old and appearing in a children’s court) also mentions appropriate questioning techniques that may be used in the court system (this does not apply to the criminal courts). however, to date no specific guidelines have been developed as to how these differential questioning techniques should be employed (carter & boezaart, 2016). for justice to be served for persons with disabilities, the south african criminal justice system must consider developing alternative methods that (1) enable witnesses with disabilities to fully partake as a witness, (2) include the admissibility of earlier statements made by the victims in place of their court testimony and (3) reduce the so-called discriminatory procedure of subjecting these witnesses to psychological examinations in an attempt to provide evidence that they are competent to give testimony (pillay 2012). evidentiary barriers were addressed in foreign law in israel by the investigation and testimony procedural act 2005, which facilitates court testimony of persons with mental and cognitive disabilities – whether victim, witness or offender (ziv 2007). the individual is allowed to give evidence in a modified court procedure and the act requires that comprehensive accommodations be provided to persons with disabilities (ziv 2007). however, flynn (2016) cautions that the adaptation of the rules of evidence and procedures in criminal cases involving persons with disabilities may have the potential to be highly disputed. accommodating a witness with communication disabilities during the court process should be prioritised, as the evidence of such witness is usually essential for a successful conviction in the criminal court. it is particularly important that a fair trial process should be encouraged through the provision of additional supports, as well as through the adaptation of the rules of evidence and procedure (benedet & grant 2012). these accommodations are in line with the prescriptions of the crpd, which specifically mentions in article 13 that ‘procedural and age-appropriate accommodations’ should be provided to enable persons with communication disabilities to fully participate in the legal proceedings (ortoleva 2011; united nations 2006). in summary, the aim of this research was to identify court accommodations, recommended by legal experts, that could assist individuals with severe communication disabilities to achieve justice in the south african court system. research method and design study design a qualitative research design was used to conduct a discussion with a panel of legal experts (creswell & poth 2018; diaby et al. 2015; jensen et al. 2017). the expert panel was guided by a human rights framework that influenced the study framing, design, data collection and analysis (skempes, stucki & bickenbach 2015). participants in the study participants were selected using purposive, non-probability, expert sampling, which is a positive tool to use when investigating new research areas (etikan, musa & alkassim 2016) – in this case, court accommodations for persons with communication disabilities. ten potential participants were identified based on their professional experience of working with victims with communication and intellectual disabilities who had been victims of crime and the fact that they had worked with these individuals during the court process. of the 10 potential participants, eight consented to partake in the expert panel discussion. unfortunately, three experts were unable to physically attend because of unforeseen personal and logistical reasons, but as they recognised the value of the study, they inquired if they could do so remotely, in an asynchronous manner. to optimally benefit from their expertise, it was decided to collect their data via an email interview in which the exact questions that had been asked during the panel discussion were sent to them. their responses were analysed and summarised and returned to them for verification as part of member checking. thereafter, the first author presented their responses (with their consent) in the form of a powerpoint presentation on the same day as the expert panel discussion. the other five experts attended and participated in the expert panel discussion that was hosted at a venue convenient for all involved. the participants’ biographical details are shown in table 1. the participants all knew each other professionally, which led to rapport and trust being established quickly. table 1: participant biographical details. furthermore, all participants had experience of working with persons with disabilities during the legal process. data collection before recruitment commenced, ethics approval was obtained from the research ethics committee of the relevant institution. an email was sent to each participant with full details and instructions about the panel discussion. once consent had been obtained from the participants, the programme for the full-day panel discussion was sent to them to allow adequate preparation and reflection time. at the beginning of the panel discussion, the researcher reiterated the topic, aim and purpose of the day. the procedure and timeline were highlighted. experts were also reminded that their participation was voluntary and that they were allowed to discontinue at any given time without any negative consequences. prior to the expert panel discussion, the eight experts had been asked to prepare a presentation of 25–30 min on the invited topic to address the following questions: (1) could you briefly discuss your experience with persons with communication disabilities in the criminal justice system? (2) have you previously successfully asked for accommodations, and if so, can you please elaborate? the experts sent their presentations to the first author who acted as the primary correspondent and chair of the day. the first three presentations were presented by the first author. each presentation provided a thought-provoking perspective on the invited topic (court accommodations for persons with communication disabilities), identified major trends and made suggestions for further accommodations. in the afternoon, a group discussion (similar to a focus group) followed, in which the following question was discussed: what may facilitate the process for a victim with a communication disability to be able to access and participate on an equal footing in the court system and process? apart from the audio recording, the third author also typed the full-day’s panel discussion to contribute to the trustworthiness of the data. she made a verbatim transcription of both the individual presentations and group discussion and then audited each transcript against the original audio recording. a total of 20% of the transcriptions were additionally checked by an independent researcher. discrepancies were noted and revised when necessary (the formula used to calculate agreement: (hallgren 2012). a 98% level of agreement was reached. this rigorous process greatly enhanced the procedural integrity of the transcripts (mclellan, macqueen & neidig 2003). data analysis the researcher used atlas.ti 8, a computer-assisted qualitative data analysis software (caqdas), to conduct a thematic analysis and combined it with an inductive coding approach (fereday & muir-cochrane 2006). friese, soratto and pires (2018) describe seven phases of conducting a thematic analysis when using a caqdas to expand on braun and clarke’s (2006) six phases, namely, (1) becoming familiar with the data; (2) generating initial codes; (3) developing a structured code system; (4) searching for themes; (5) reviewing themes; (6) defining and naming themes; and (7) producing the report. this followed on first trying a deductive approach by using article 13 (access to justice) of the crpd as a coding framework. however, it proved to be an unreliable approach as a stable code structure could not be achieved (friese et al. 2018). the data were coded and analysed by the first author, after which authors 2 and 3 independently checked the codes and themes to increase inter-coder reliability and agreement of the data (campbell et al. 2013). the process of initial coding (phase ii) resulted in a list of 244 codes. next, a process of re-reading the coded segments, renaming, splitting and merging codes was conducted, which resulted in a total of 46 codes in the final structured code system (phase iii) (friese et al. 2018). ethical considerations this article is part of one data source that is part of the first author’s phd research where ethical clearance was obtained from the university of pretoria, south africa. ethical clearance number: gw20180718hs student number: 29642630. results table 2 shows the structured code system used in the study. the bold capital letters present category labels that serve as titles, and all data segments were distributed under the subcodes of a category (friese et al. 2018). the number in the column ‘grounded’ shows how frequently a code was applied. table 2: structured code system. table 3 provides examples of codes (specific quotes from the experts) that emerged from the six main categories. table 3: examples of codes (quotes) in specific categories. next, the authors used article 13 (access to justice) of the crpd (united nations 2006) as a conceptual framework to link categories to themes (drew et al. 2011; harpur 2012). four main themes were identified, namely, equality, accommodations, participation and training of professionals. the themes and related categories are presented in figure 1. figure 1: conceptual framework, themes and categories. discussion an in-depth discussion of the four themes – equality, accommodations, participation and training of professionals – is presented here. equality article 13 specifically mentions the importance of ensuring access to justice for persons with communication disabilities on an ‘equal basis’ with others (united nations 2006). the south african court system is not always considered beneficial or easy to pursue as one expert highlighted: …[p]eople not seeing any value in the criminal justice system because the legal system has never actually benefited them in any way, the whole process of trying to go through the system is just one more big obstacle… impenetrable obstacle! the criminal law (sexual offences and related matters) amendment act 32 of 2007, section 170a, subsection (1). (p. 106) if transformative equality is to be achieved, processes and procedures within the court system need to be adapted and modified to enable persons with communication disabilities to participate equally in court. the court and criminal justice system have an important role to play in furthering transformative equality. in order to ensure that it promotes its aims of protecting vulnerable groups such as persons with communication disabilities, the court system is compelled to develop certain criteria to accommodate witnesses with communication disabilities (fredman 2005; lord & brown 2011). the crpd recognises that laws are not always sufficient to protect the rights of persons with disabilities, and therefore, strategic litigation and law reform are needed to ensure that laws are in line with international human rights standards such as the crpd (drew et al. 2011; flynn 2013). some countries have laws that protect and assist witnesses with disabilities to access the court system on an equal basis and have set a benchmark for other countries, for instance, scotland’s vulnerable witnesses act of 2004, israel’s investigation and testimony procedural act (accommodations for people with cognitive or mental disability) of 2005 and india’s rights of persons with disabilities act of 2016. yet, the development of policies and laws historically excluded persons with communication disabilities, which implies that their needs were not adequately addressed. according to drew et al. (2011), it is therefore essential that persons with communication disabilities are actively involved in the law reform process. accommodations the court has a responsibility to ensure fair and equal access for all witnesses, including those with communication disabilities, and certain procedural accommodations could assist the court in achieving transformative equality. when discussing types of accommodations, msipa (2015) puts forward the following strong statement: in the criminal trial setting, the question should not be whether a person is competent to testify; rather it should be what types of accommodations are required to enable the person to give effective testimony? (p. 89) the crpd specifically mentions that provision of procedural and age-appropriate accommodations should be provided to a witness with a communication disability in order to ensure his or her effective access to justice (united nations 2006). lay or legal assessors section 34 of the magistrates’ courts act 32 of 1944 allows for the appointment of assessors in both criminal and civil cases in south africa. expert assessors are generally experienced people in law who are advocates or magistrates (department of justice and constitutional development 2019). lerm (2012) explains the rationale for this practice, namely, to assist magistrates and judges who are only professionally trained and who frequently lack the expertise and practical knowledge to match that of the experts who would testify in cases before them. therefore, the use of expert assessors to assist judges and strengthen their competence to judge complex matters was developed. appointing a legal assessor who is a trained and skilled expert in communication disability could assist the judge or magistrate to understand the witness’ disability, as well as the accommodations that are needed to support this witness to be able to participate and testify in court. intermediaries as criminal proceedings in court are generally not disability-friendly, intermediaries are used to assist both witnesses and perpetrators with communication disabilities during the court process and ultimately to support the witness or perpetrator to participate equally in the court process. this process is similar to the appointment of intermediaries in criminal cases for all witnesses under the biological or mental age of 18 years. an intermediary is a facilitator who assists a witness to testify and give evidence in court. as a result, all communication interaction exchanged between the witness and the court takes place through the intermediary, including examination-in-chief, cross-examination and re-examination (fambasayi & koraan 2018). the role of the intermediary is to translate the questions from the prosecution and the defence attorney and put them to the witness in a language and terminology that the witness understands (jonker & swanzen 2007). foreign case law in england has allowed the intermediary to assist with questions for cross-examination of the witness, which had been agreed in advance by all parties involved (r v michael boxer [2015] ewca crim 1684) (the advocate’s gateway 2019). this is a strategy that could assist the courts with regard to the cross-examination from the defence. alternative and augmentative communication alternative and augmentative communication (aac) strategies and techniques are used by individuals with significant communication disabilities who cannot rely on spoken language alone for communication purposes, for example, persons with cerebral palsy or those with intellectual disability (beukelman & mirenda 2013). broadly, aac systems have a binary taxonomy that distinguishes between unaided and aided communication systems. in the case of unaided communication, persons use only their bodies to convey their messages, for example, systems with linguistic features such as a formal sign language (e.g. south african sign language [sasl] and finger spelling) or systems without linguistic features such as natural gestures, facial expressions and vocalisations (beukelman & mirenda 2013). in south african courts, persons with communication disabilities have been allowed to use unaided communication systems such as informal signs to testify in court (r v ranikolo 1954 (3) sa 255 (0)). however, for many persons with severe communication disabilities, for example, those with significant physical disabilities and limited movement, the use of unaided communication systems (such as sasl) is not possible. aided communication can be defined as systems that require external assistance (e.g. using pictures or objects) to produce a message. as with unaided systems, aided systems also fall on the continuum of linguistic features. on the one end of the continuum, there would be symbol sets (without linguistic features), and on the other end, there would be symbol systems (with linguistic features) (bornman & tönsing 2019). traditional orthography (e.g. letters of the alphabet) is an example of an aided symbol system with linguistic features that would allow literate individuals with a communication disability to generate their own messages. alphabet letters can also be presented in braille or morse code format. braille, a tactile symbol system for reading and writing that is typically used by blind persons, also requires literacy skills and hence the theoretical argument reverts to the issue of the literacy level of individuals with disabilities (groce & bakshi 2009; statistics south africa 2012). unfortunately, using aided systems with linguistic features to testify is not applicable to the majority of south africans with communication disabilities because of the notoriously high illiteracy rates in the local population (groce & bakshi 2009; statistics south africa 2012). blissymbols are a conceptually based graphic symbol system with linguistic rules and markers (beukelman & mirenda 2013). blissymbols are placed half-way on the aided communication continuum between symbol sets with no linguistic features and symbol systems with linguistic features. bliss symbols have been used successfully in a south african court case (toefy 1994). unfortunately, bliss symbols are not commonly used in south africa as part of the education system. the other end of the aided communication continuum consists of symbol sets that contain finite numbers of easily guessable symbols with limited linguistic features. symbol sets thus consist of a defined number of symbols that have no rules for expansion or generating new words, for example, picture communication symbols (pcs). this means that messages can only be compiled by selecting symbols from the pre-selected set (beukelman & mirenda 2013). symbol sets are particularly useful for non-literate persons, persons with limited literacy skills and preliterate persons. preliterate persons (young children who have not yet acquired literacy skills or individuals who have not yet been exposed to literacy and who might still acquire literacy skills) often use graphic symbol sets that do not have linguistic features and therefore do not require literacy skills. it is important for preliterate individuals with communication disabilities to have access to alternative means to represent messages and concepts to communicate (drager, light & mcnaughton 2010). therefore, aided aac systems that do not have linguistic features, such as pcs, may be a viable option in the criminal justice system. for non-literate and preliterate individuals, the vocabulary required to access the court system could be selected and represented in the form of line drawings that could be displayed as a communication board or book. alternatively, the required vocabulary could be programmed into a specific speech-generating device such as a tablet with specific aac software (caron, light & drager 2016; white et al. 2015). these systems could assist non-literate, minimally literate as well as preliterate persons with communication disabilities to participate with others in their environment, as the meanings of many of the symbols and line drawings are easy to understand (dada, huguet & bornman 2013). the use of systems with a set of pre-selected vocabulary in the court system also has specific implications. the vocabulary will be selected from a pre-determined symbol set, and thus it will not be generated, as would have been possible when a symbol system such as traditional orthography or braille had been used. these implications could be remedied by adding multiple foils and categories in the pre-determined symbol set (white et al. 2015). in countries such as england, wales, northern ireland and scotland, witnesses with communication difficulties are permitted to use both aided and unaided forms of aac to support their testimony (o’leary & feely 2018). the south african court system needs to formally recognise aac as a form of communication and giving testimony for witnesses with communication disabilities, and provided that the court procedures and rules of evidence are not undermined, this form of accommodation should be allowed in court (flynn 2016). participation the crpd, and specifically article 13, highlights the importance of persons with disabilities being active participants as witnesses in the court process (united nations 2006). in south africa, the government and non-profit organisations offer multiple court preparation programmes to empower the witness with disabilities to participate effectively in the court system. greater awareness needs to be raised and wider education be offered regarding the relevant court preparation programmes so that persons with disabilities and their families would know whom they can turn to when wanting to access the court system. the purpose of the ke bona lesedi court preparation component offered by the national prosecuting authority of south africa (npa) is to prepare and empower victims with communication disability (witnesses and their families) for testimony (tewson 2017). this skilled and practical intervention is prosecutor guided and aims to empower witnesses to give credible evidence in court. the court preparation officers (cpos) accompany the witnesses and complainants from beginning to end, encouraging them, teaching them coping mechanisms, referring them for counselling and giving crucial feedback to the prosecutor. they also ensure that the prosecutor knows how to approach a witness with specific communication needs (tewson 2017). court preparation officers, together with the intermediaries, play a critical role in the court process and their role should be advocated in all courts as part of ensuring equal access to justice for witnesses with communication disabilities. court preparation officers identify the accommodations and special needs of the witness prior to testimony and consultation with the prosecutor, which ensures that the necessary accommodations are timeously arranged (tewson 2017). a barrier and recurring obstruction to witness participation is the victim’s level of disability and ability to be a competent witness. pillay (2012) strongly argues that every attempt must be made to find reasons why witnesses with intellectual disabilities should be permitted to give evidence, rather than why they should not be allowed to testify. scottish law has addressed this barrier where the vulnerable witnesses (scotland) act of 2004 legally removed the competence test for vulnerable witnesses. the advantage of removing this test is that it allows the magistrate to determine the witness’ reliability, rather than to rely on a test that does not necessarily ensure the truthfulness of their evidence. it also ensures that victims with communication disabilities have the opportunity to be heard (turner, forrest & bennett 2016). training of professionals the crpd specifically mentions the importance of training all professionals who work in the court system. lack of training is consistently labelled as a barrier in the south african court system as it gives rise to, for example, lack of awareness, lack of patience and lack of knowledge (bornman et al. 2016). this type of training has been demonstrated to be effective. for example, a swedish study that focused on the training of active crime investigators of alleged child abuse who participated in six different half-year courses between 2007 and 2010 showed effective outcomes in shaping the interviewers’ behaviour towards better compliance with foreign recognised guidelines (cederborg et al. 2013). this is just one of many examples of the benefits of specific training programmes for legal professionals. access to justice can be improved when these professionals can receive the relevant training (larson 2014), and this practice should be prioritised in the south african court system. evaluation of study this study focused on the south african court system and therefore included only south african legal experts. an expert panel incorporating foreign experts could have added a more global perspective on the accommodations needed for persons with disabilities. a comparison between south african and foreign experts should be considered for future research to obtain a more comprehensive list of possible accommodations that have demonstrated effect. other professional stakeholders (therapists, parents and caregivers) could have also been included in the expert panel to provide additional accommodations. although this study focused predominantly on the witness and victim, the same supports could be offered to perpetrators and offenders too. effective access to justice could also be achieved, the integrity of the court system could be maintained (flynn 2016) and all human rights would be uplifted. this study focused on the crpd as a human rights framework, although future research could also include other relevant frameworks such as the international classification of functioning, disability and health (icf) when aiming to identify possible court accommodations for persons with communication disabilities. furthermore, when conducting legal research and making legal statements, a systematic literature search approach (such as a legal systematic review) could be followed (baude, chilton & malani 2017). therefore, future research could focus on conducting systematic legal reviews that are evidence-based to determine a scope of published literature that focuses on globally accepted court accommodations for persons with communication disabilities. conclusion the aim of this study was to identify court accommodations that could assist persons with communication disabilities to participate in the court system. the reality is that persons with communication disabilities who were victims of crime, as well as their families, still face many barriers when accessing the court system. as a result, they sometimes choose not to report the victimisation, as all too often this process seems to be more of an obstacle than a benefit. similarly, perpetrators with communication disabilities may experience profound disadvantages in preparing and presenting their defence if not provided with appropriate accommodations during both the pre-trial and trial processes. foreign and national laws forbid discrimination against persons with communication disabilities and insist that they should be given fair and equal access to the court system. for transformative equality to be achieved, certain rules and laws need to be changed to include specific accommodations for witnesses with communication disabilities so as to enable them to participate effectively in the court system. furthermore, it is also the responsibility of the courts to ensure effective access to justice. participation in court processes can benefit both the victim and the perpetrator in many ways because it will allow them to tell their version of events and feel believed. more importantly, it may assist these individuals to experience the effective fulfilment of their human rights. acknowledgements the authors would like to thank the following experts for participating in the research: prof. anthony pillay, advocate riekie krause, prof. helene combrinck, dr nokuthula shababala (from the sexual abuse victim empowerment [save] programme at cape mental health), mrs anne kramers-olen and dr shaheda omar. competing interests the authors declare that no competing interests exist and that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions r.m.w., j.b. and e.j. contributed to the conceptualisation of the study, development of methodology, analysis of data, summary of results, writing of the original draft and the subsequent versions. k.t. and j.v.n. contributed to the introduction and discussion sections, and they reviewed the article. funding information the first author (r.m.w) would like to thank her doctoral scholarship funders, the national institute for the humanities and social sciences (nihss) and the south african humanities deans association (sahuda), for the financial assistance. data availability statement the data that support the findings of this study are available on request from the corresponding author (r.m.w.). the data are not publicly available due to [restrictions e.g. their containing information that could compromise the privacy of research participants]. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the 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dublin 2, ireland dates: received: 12 mar. 2012 accepted: 05 oct. 2012 published: 23 jan. 2013 how to cite this article: mcnally, a. & mannan, h., 2013, ‘perceptions of caring for children with disabilities: experiences from moshi, tanzania’, african journal of disability 2(1), art. #21, 10 pages. http://dx.doi.org/10.4102/ ajod.v2i1.21 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. perceptions of caring for children with disabilities: experiences from moshi, tanzania in this original research... open access • abstract • introduction    • problem statement    • literature review • research method and design used    • participants    • setting    • design    • procedure    • analysis • results    • theme 1: objective challenges    • theme 2: subjective challenges    • theme 3: positive experiences    • theme 4: needs identified    • theme 5: coping mechanisms • ethical considerations    • potential benefits and hazards    • recruitment procedures    • informed consent    • data protection • trustworthiness    • reliability    • validity • discussion    • outline of results    • practical implications • limitations of the study    • future research    • recommendations • conclusion • acknowledgements    • competing interests    • authors' contributions • references abstract top ↑ background: although there exist laws, policies and standards in tanzania that serve to protect and improve the lives of children with disabilities, the individual human experiences and feelings of the carers and parents still remain the realities of caring for children with disabilities. there is a lack of qualitative studies examining experiences in a developing context. this research aimed to fill that gap.objectives: the objective of this research was to gain an insight into how having a child with a disability impacts upon participants lives and to examine both negative and positive experiences of care through the use of qualitative methods. method: this was a qualitative, exploratory study and followed a phenomenological method. purposive convenience sampling methods were used to recruit 14 carers in moshi, tanzania. qualitative, semi-structured interviews were undertaken with all 14 participants. results: five main themes emerged from the data which shed light on the carers experiences, namely, objective challenges in terms of financial challenges, employment issues and demands of care; subjective challenges in the form of stigma, isolation and pity; positive experiences such as the child’s progress, respect and happiness; material and financial needs; and coping mechanisms which included beliefs, support and attitudes. conclusion: the findings of this research were that objective challenges are common and more significant than subjective challenges. positive experiences were not as easily identified by the participants as the challenges faced. however, having analysed the data, carers do not experience their roles as entirely negative. they simply need the resources to deal with objective challenges which in a developing context are not easily attainable. introduction top ↑ problem statement informal caregivers are a crucial element of society in taking on the continuous and demanding task of providing care. they perform a job that saves the taxpayer money thereby decreasing pressure on service providers and enabling the family unit to stay together. according to the international labour organisation (ilo) over 9% of the population in tanzania have a disability and informal caregivers are vital to society (ilo 2009). adequate support is required for caregivers. as stated by kittay (2001:575), when the support is inadequate ‘either the cost of care is borne by the caregiver alone’ or the recipient of care suffers. understanding the lived reality of carers is important so that support systems and interventions can meet their needs and local and national organisations can provide them with vital support in order to continue to provide care.in tanzania, there are a number of policies, laws and standards that have been implemented to protect the rights of people with disabilities (pwd) and in the 1977 constitution, discrimination against pwd was prohibited. whilst these aspects of legislation serve to improve the lives of pwd, it is still vital to understand the individual experiences of the carers and parents of children with disabilities (cwd) and provide an insight into the realities of caring for a cwd. research examining carer burden, coping strategies and experiences of carers and parents of cwd in low-income countries is not common, with little research in the african context (gona et al. 2011). in the last decade, several qualitative studies have been conducted in various cultural contexts to examine the lives of parents who are raising a cwd but many more quantitative studies which do understand ‘the richness of these parents experiences’ (gona et al. 2011:456) have been conducted. there is a need for more qualitative studies to provide rich insights into the realities of care. previous studies have focused on negative aspects of carers’ experiences creating an unbalanced view of parents experiences with ‘serious gaps in our understanding of the social experience of disability’ (green 2007:151). green (ibid:151) notes that studies have primarily focused on the subjective burden of care and have failed to understand the objective burden and the positive aspect of care. resch et al. (2010) note that previous research has fallen short of capturing the entire perspective and experiences of carers. this paper aims to fill the gap by focusing on the perspectives of carers and parents of cwd. it explores negative experiences, both subjective and objective burden, positive experiences, needs and coping mechanisms, thereby providing a more balanced view of the situation. it also adds to the literature in the form of an additional and needed qualitative inquiry carried out in a developing country, namely, tanzania. literature review in examining the care of vulnerable children, brannen, mooney and statham (2009) state that because of life experiences and events in peoples’ lives, some may feel that they have a ‘calling’ to be a carer. tronto (1993) lists four elements that lead to ethical practices in caring, namely, competence, responsiveness, responsibilities and attentiveness. however, both the structural context and the capacity of the individual are both factors in understanding the responsibilities of care and as stated by brannen et al. (2009) actions are ‘decided on the basis of what seems “right” under given social conditions’ (brannen et al. ibid: 378). in circumstances where people are faced with the task of caring there are many experiences to be noted.negative experiences identified in extant literature include carer burden and stress, financial and employment issues, stress, stigma and relationship issues. lassetter et al. (2007) discuss themes found in research based on the experiences of caring for cwd, namely, stress, effect on the mothers’ employment, spiritual growth and finding the positives. the severity of the disability, the socioeconomic situation of the family, support systems available and marital relationships all impact on carers’ experiences (gona et al. 2011). hartley et al. (2005) identify four challenges in caring for a cwd through a study they conducted in uganda. these four challenges were poverty, communication issues, impact of the disability and the burden of care. as resch et al. (2010) state, the responsibilities of carers are physically demanding, affect social and family relationships, and adversely affect employment. indeed, the ‘person-environment interaction’ affects carer well-being (resch et al. 2010:140). research has primarily focused on specific tasks and the challenges associated with caring but failed to capture the full picture. as kittay (2001) states, because of the demands of the role, the caregiver can be vulnerable to exploitation. in this respect, an understanding of their experiences is essential. little attention has been given to the nature of carer burden. green (2007) divided the ‘burden of care’ into: • objective burden – possible financial issues, tasks and time involved in caregiving • subjective burden, the perceived impact of the objective burden or internal emotional distress. burden is associated with stress. pelchat, lefebvre and perreault (2003) discuss how stress causes doubts in carers minds when it comes to evaluating their skills, resulting in greater stress. peoples’ socio-economic situation can be a cause of stress (dempsey et al. 2009). mitra, posarac and vick (2011) discovered that a higher proportion of expenditure in households with disabilities is spent on health care in kenya and malawi. significant outpatient costs are associated with caring for a cwd (gona et al. 2011). hartley et al. (2005) discovered in uganda that poverty affects coping because external resources are unattainable. other studies noted that caregiving is time intensive and leaves little time to seek employment (lassetter et al. 2007). this is corroborated in an australian study by green (2007) who states that unavailable, unaffordable and unsuitable child care decreases carers job opportunities. in 1963 goffman identified that parents of cwd experience ‘courtesy stigma’. this is ‘stigma of affiliation that applies to people who associate with stigmatised groups’ (gray 2002:735). green (2007) cites authors who conclude that social isolation and increased emotional distress are attributed to courtesy stigma (alban 1990; blum 1991 & macrae 1999). stigma and burden are not mutually exclusive. green (2007) identified in her study that subjective burden increased alongside perceived stigma and mitra et al. (2011) concluded that stigma results in increased isolation and restricted participation in activites. family units are crucial for those members who are dependent, namely, children, the elderly, the sick or people with disabilities (kittay 2005). family relationships impact on maternal caregiving (huang, kellett & st john 2011), for example, when cwd are accepted by family members, parents feel more satisfied. gray (2002) discovered that mothers of cwd were more prone to stigma than fathers were because mothers are attributed more responsibility for their child’s behaviour than their spouses and are typically the primary carer. hartley et al. (2005) discovered that the onus of care falls on mothers in uganda. there have been studies carried out that conclude a lower stress level amongst carers is associated with a healthy marital relationship and spousal support. hastings (1997) cited in gona et al. (2011) states that extended family support decreases stress. susan whyte (1991) cited in ingstad and whyte (1995), found that the care of a person with ‘retardation’, ‘epilepsy’ or a ‘mental illness’ in tanzania was left to the family and was not seen as a responsibility bestowed on the wider community. she goes on to state that because families are large, care could be shared thereby reducing the burden. according to hartley et al. (2005), however, extended family systems are breaking down in africa and caregiving tasks are usually the responsibility of a female carer. indeed, studies in zimbabwe and botswana have found that the old, the young and the ill are left to care for the pwd because able-bodied family members have been migrating for work (ingstad & whyte 1995). therefore, it seems that the literature available about family support in african countries varies and further investigation is warranted. positive experiences and parenting competence are lacking in the literature (hastings et al. 2002). hastings et al. (2002) recognise how little attention has been given to positives, both with regard to perceptions of the child and the impact the child has on the family. rehm and bradley (2005) discovered that closer bonds with extended family, close relationships with care providers and increased time with their children because of their inability to work outside the home were identified positives. personal growth, family closeness, increased sensitivity to others, less materialistic attitudes and opportunities to expand ones social and political activities and contacts were identified (hastings et al. 2005). kisler and mcconachie (2010) identify that raising a cwd is also as rewarding and positive as raising a ‘normal’ child. it is noted that rehm and bradley (2005) and hastings et al. (2005) carried out their research in a developed setting and that different impacting factors were present. for example, rehm and bradley (2005) carried out their research on a population of european american or hispanic heritage; 48% of their population had an income of more than $55 000 and all had access to healthcare. taunt and hastings (2002) bring attention to the fact that although positive experiences are reported, they occur in tandem with the negative experiences. other studies by ferguson (2001), landsman (2003), mckeever and miller (2004), read (2000), all mentioned in green (2007), conclude that positive attitudes amongst carers is unrealistic and that positivity actually arises from a failure to accept their circumstances; in other words, they are in denial about their situation. green (2007), however, discussed how such conclusions only serve to discourage carers to find the positive aspects of care, denying them the potential positive consequences. seminal authors such as kittay (2005:126) argue against comments by authors such as mcmahan (1996) who states that people who are ‘profoundly cognitively impaired are incapable … of deep personal and social relations … aesthetic pleasures and so on …’ kittay (2005) argues against this. he says that there is joy to be found in caring for people who are severely disabled. indeed, the disability movement, including authors cited by watermeyer (2009); abberley (1993); oliver (1990); morris (1989) and lonsdale (1990), reject the logic of ‘disability loss’ where there is a ‘constant awareness of what has been lost or was never had’ (watermeyer 2009:92). not all studies find positive experiences. johnson, o’reilly & vostanis (2006) discovered through a qualitative study that isolation, conflict, a limitation of lifestyles and self-blame were common themes and not the positives of social contact, opportunities, harmony and increased self-esteem. both hastings et al.’s (2002) and taunt and hastings’s (2002) findings support that positive perceptions are used as a mechanism for coping. however, the external factors of social support and difficulties of care were controlled in each of these studies. folkman and moskowitz (2000) suggest that psychological models that examine coping need to include both negative and positive affects. this will help in validating the positive experiences in the investigation as well. swartz and watermeyer (2008:187) discuss the perception of disability throughout history and that ‘disabled people have a history of being viewed as not entirely human’. in examining previous studies from africa it becomes apparent that carers are stereotyped because of the perception of disabilities. in uganda and kenya the perception that disability is the work of evil spirits or a curse or god’s punishment results in cwd being hidden (gona et al. 2011). hartley et al. (2005) carried out a study in uganda which revealed that carers of cwd are subjected to stress. in examining the maasai people, however, it is interesting to note that disability is not used as criteria with which to classify people (ingstad & whyte 1995). the maasai’s perceptions and attitudes vary but do not focus primarily on inability. in examining the extant literature it can be seen that there is a wide range of experiences from various contexts. research method and design used top ↑ participants fourteen parents and carers of children with disabilities who live in the moshi region, tanzania were interviewed for this study. participants were selected based on their children’s attendance at day care centres run by building a caring community (bcc). parents and carers refer to either the parents of a child with disabilities or a carer who spends a large proportion of their time caring for the child. throughout this manuscript the words ‘carers’ or ‘parents’ refer to parents and carers as described above, unless otherwise stated. setting moshi is a market town in the kilimanjaro region of tanzania. much of the employment in moshi takes place through selling goods at the markets. bcc is a local tanzanian ngo that has several day care centres in the moshi area that provides care for cwd. design this research was qualitative-exploratory in nature which allowed the researcher to uncover new ideas (stebbins 2001) and to examine the complexities of the experiences of caring for a cwd. qualitative research helps the researcher to understand the human realities of the situation (morse 1995). a phenomenological approach was used because as denscombe (2007) says ‘phenomenology is an approach that focuses on how life is experienced’. this approach allowed the researcher to explore how respondents viewed their situation. this approach follows one undertaken by other similar studies (gona et al. 2011) and (hartley et al. 2005). an interpretivist orientation was followed which enabled individual interpretation of phenomena (denscombe 2002).the researcher acknowledges the limitations associated with the interpretivist orientation, namely, that results cannot be generalised (poston et al. 2003). the researcher ensured rigour by following a systematic approach (denscombe 2002) and clearly showing the steps in the research (barbour 2001). procedure participants were selected through their status as parents or carers of a cwd by a purposive convenience sampling method. access to the study population was negotiated through the organisation bcc who allowed use of their premises to carry out data collection. recruitment was facilitated by staff members at the centres. possible participants were introduced to the principle investigator and were given an information leaflet to consider for 7 to 10 days. if a participant chose to take part, they were then required to sign an informed consent form before taking part. participation was completely voluntary with no remuneration or conditions attached.semi-structured interviews (ssis) were used for data collection and each participant was interviewed once. a guide that was followed for the interviews is included in box 1 below. an audio recording device was used so that the researcher could observe non-verbal behaviour (davies 2007). using ssi’s gave the respondents freedom to illustrate important concepts and to respond to the interview in whatever way they wished (morse 1995). interviews took place in a secluded area within the day care centres so that the respondent’s child would be cared for by the staff. although there was much background noise, no other setting was deemed appropriate. staff at the centres were on hand should participants become upset or distressed during the interview process. box 1: interview guide. interviews were conducted in the local language, using a translator and lasted between 25 to 50 minutes. transcripts were augmented with non-verbal gestures and emotional reactions from field notes in order to capture the true essence of phenomena being discussed. analysis this research employed an inductive approach; theory was developed from the data (rudestam 2007) through manual analysis. an example of a theme emerging from the data is included in table 1 below. phenomena identified in the literature review which were deemed important were followed up in interviews. data, in the form of transcripts was analysed systematically with a constant comparison approach. recordings, field notes and transcripts were all used to triangulate the data. congruence was found amongst all verbal and non-verbal data. table 1: the theme of objective challenges and the resulting subthemes are shown in the table below. the second author independently conducted an inquiry audit trail following the process laid out by halpern (1983), cited in lincoln and guba, (1985). the audit of the study materials established the credibility, confirmability and dependability of the investigation by reviewing techniques employed in the study, including coding of the data and triangulation of data (anfara, brown & mangione 2002; lincoln 1995; lincoln & guba 1985). results top ↑ five main themes (table 2) were identified, namely: 1. objective challenges 2. subjective challenges 3. positive experiences 4. needs identified 5. coping mechanisms. table 2: the table below shows the themes and subthemes that emerged from the data. the results of this research highlighted both the challenges experienced by carers as well as the positives. theme 1: objective challenges objective challenges are challenges related to objective burden and cannot be dealt with through emotional means. demands of care, financial challenges and employment issues were objective challenges identified. the demands of care experienced were the tasks and time involved in caring. some parents spent all their time caring. many parents, however, acknowledged that when the child spent time at the day care centre they did not spend time care-giving. participant k said, ‘from monday to friday from the evening until the morning because she comes to this centre. and then on saturdays and sundays altogether at home’.the tasks of caring identified varied based on the type and severity of the disability. physically carrying the child in the case of children who were unable to walk was difficult, ‘the most difficult thing is when he falls sick because he is more grown up now and so when i have to carry him to mawenzy hospital in town it is very difficult so i have to take a taxi’ (n). another issue faced by parents was finding their children having left them alone, ‘i used to have to find him, i didn’t know where he is [sic] so i would go house to house to find out where he was’ (h). lack of money for necessities was a financial challenge. necessities included food, clothes, nappies and shelter or housing. participant h explains how she could not afford rent, ‘i used to rent houses but it becomes [sic] difficult to find the rent for those houses’ (h). lack of money for nappies or ‘pampers’ was inevitably a response confined to those who cared for incontinent children, ‘the pampers are sold like [sic] 10,000 per dozen, one packet, one packet is 10,000’ (l). stemming from the issue of unaffordable pampers, was unaffordable clothes or bed sheets. one participant expressed her inability to afford food, ‘my economic situation is very hard. sometimes i can’t get enough food for her’ (a). a lack of money for healthcare was a major financial challenge. hospital fees and transport were unaffordable, ‘sometimes when john gets sick i can’t get the money for the treatment’ (e), a sentiment also expressed by participant k, ‘when grace falls sick, at that time i feel like i have a very big burden because i can’t afford to pay money for her surgery in kcmc. it’s very expensive …’ (k). a mix of low-income jobs and lack of time resulted in employment issues. the more dominant challenge was the lack of time to work. only a couple of parents managed to use the time their children were cared for to do some work, ‘when it comes to the morning, i just bring him here so i have to go and find some moneys and things like that’ (f). one woman had to stop working because of the demands of care ‘… i used to work making bed nets so then when i get this disabled child i had to stop it’ (h). participants who didn’t work because of the time they spent caring brought attention to the low income of their husbands’ jobs, ‘what i experience is that … sometimes when my husband when he comes home maybe he doesn’t have money because of his poor job’ (b). theme 2: subjective challenges subjective challenges are emotional challenges and are intangible. stigma, isolation and pity were identified. rejection and discrimination were manifestations of stigma. some participants spoke of rejection in general terms, ‘they all run away after knowing that i am having [sic] a disabled child …’ (c). but nearly half of all participants mentioned this specifically in relation to their husbands or his family, ‘after giving birth and he was seeing [sic] how john is, he runs away’ (e). two participants reported rejection on the basis of blame, ‘in our family we don’t have such kind of diseases’ (h). in one extreme case an aunt who wanted a relationship with the child was subsequently rejected, ‘… after she accepted jack the other family of the father, they also rejected the auntie, they don’t need her…’ (f). stigma or discrimination was shown in gestures such as pointing, laughing and staring, ‘they just see him the way he is and they find out he is disabled so they’re just laughing at him’ (f) or, ‘… in the fathers side they point’ (a). another way stigma is shown is by people avoiding the child, ‘… maybe alex he can go anywhere and see the door open and just come in so they say that this is our house and we don’t want him … ’ (l). stigma directed at parents at social gatherings was reported, ‘i used to go with john to celebrations but some people are stigmatising [sic] towards him. then they say that maybe the children is having asthma and the mother is just doing farts… ’ (e). lack of support and worry contributed to isolation. in some cases spousal or immediate family support was absent with some participants experiencing blame, ‘… so sometimes even my mother used to blame me that i don’t teach alex how to go to the toilet and also the husband used to tell me “you don’t teach alex how to go to the toilet”’ (l). sentiments expressed indicated that isolation was an experience of many, ‘oftentimes i am alone’ (n). participants worried about the future, ‘… i also feel that maybe one day i will die one day … so i afraid to think what will happen because i am the only one who can help grace, so grace will be just living like street children …’ (k). others worried about the near future ‘… i just worry about her when she goes to school because she can’t talk straight and that other people cannot understand her … ’ (a). most participants experienced pity, ‘then i tell them that jack has a syndrome and then they say “ok, sorry, we just pray to god that he will get better someday” or something like that’ (f) or when participant m discloses about her child’s disability, ‘they just feel sorrow’ (m). there are mixed reactions to being shown pity; it negatively impacts on some participants, ‘i don’t feel good. i feel sad because people do this’ (b) but others found it helpful and it made them happy ‘i feel very happy because i feel it’s better that a person feels sad for you more than stigmatizing towards you’ (n). theme 3: positive experiences the child’s progress, respect and happiness were positives identified. most talked about seeing their child’s progress in terms of independence and ability to do tasks. participant i states that, ‘i can tell her to go to the shop and bring this. emma can go and bring it so that is a positive thing’ or indeed as participant k tells, ‘… so she can go to the shop and take beans and come back at home so i am very happy’. in those children whose disability was more severe, the ability to do simple tasks such as speaking or counting were seen as positives, ‘jack growing up little by little. sometimes he can say “mama” maybe sometimes “mama school”, things like that so that feels good’ (f) or indeed counting, ‘when emma sometimes can just come and counting [sic] 1-10 and write it down and she can come and show me like “father just look here” so that’s a positive thing’ (i). most carers felt respected and were shown respect by members of the community by being compared to others, ‘we like you because you like your child who is disabled, some of the mothers used to hide their child inside the house and they didn’t give them food …’ (d), ‘they just say that i have a good heart because i am taking care of my child, if it was another they would have thrown him away … so they respect me’ (e). most felt happy when they were shown respect, one carer even indicated she put added effort into caring for her child, ‘i am feeling good and i am adding effort in taking care of grace’ (k). interactions and health were sources of happiness. happiness was reported when children are at home and interacting with the family, ‘she is always happy. when we cook she eats together with us. she is happy with her family’ (m). some parents indicated that the positives they experienced with their child were ‘all the time, every day’ (i). two carers stated that simply seeing their children alive was a positive experience, ‘alex is alive, i can see him walking, going there and coming here so this is a positive thing’ (l). when the child was not sick was also reported as a positive time, ‘when maggie is not sick, she is ok, she is always happy, all the time she is happy when she is not sick’ (m). this is confirmed by others, ‘when diana is not sick, it is just positive but when she is sick i am feeling very sad’ (c). theme 4: needs identified financial help and the need for supplies were major needs identified. financial help in the form of sponsors and loans was needed. participant h details why she needs a sponsor and the experience of trying to secure one:i don’t have the school fees for those children because of this one, the disabled one. and i was also advised that i can take that child to the boarding school where he can learn things at the boarding school but i am not having [sic] money so i was told to fill out a certain form for sponsors so i am still filling this, i don’t know if i will get a sponsor or not. participant j simply states, ‘if i could get a sponsor for the children for alan to go to the boarding school it will be better’. some participants identified the need for financial support in the form of loans to build a house or to start a business, ‘… so i feel like having a compound for building a house where i can live with my family but i can’t because most of my time i take care of anna …’ (b). ‘i feel like if i could get maybe, like having my own house, it would be if also i could get some loans, some governmental loans … get the capital for starting business … ’ (j). some parents indicated that they need supplies including nappies and clothes, ‘alex needs pampers, he needs a lot of pampers so maybe when we go to hospital or he goes somewhere … ’ (l). theme 5: coping mechanisms beliefs in god and spirituality, support sought through prayers and hope for the future were identified as coping mechanisms. some parents were more spiritual than others, however, many parents referred to god, ‘i don’t worry so much because like i leave everything to god so it’s ok’ (f). others believe that god will help them through their problems, ‘god is the one who knows everything in this world so he will just help me’ (k). some asked god for strength, ‘i asked god to give me strength, that’s how’ (j). hopes and beliefs for the future were mentioned by at least seven participants. all relate to the child making progress, changing or getting better, ‘i hope that sean will be normal as other children’ (c) or as in sentiments expressed by participant e, ‘i believe one day he can go to school and he will walk, that’s what i believe’ (e). the centre and other people were sources of support, ‘all the time i feel good all the time and more thing that the child has been brought here …’ (n). the support the centre provides has allowed many parents to earn a small living which enables them to cope. ‘before i take diana here in this centre it was a big problem for me to do my works [sic] because i had to take care of diana …’ (d). throughout the interviews parents acknowledged that at some period they receive support from neighbours, their other children or family members, ‘the neighbours, neighbours or friends around the home they used to help me sometimes maybe when i would leave the home i would just tell them to take care of him. and also sometimes they used to give me some clothes for the child because he is incontinent’ (n). participant a indicated that she received help from the child’s siblings, ‘they do help me when i need help. they feed her when she needs’ (a). ethical considerations top ↑ ethical approval was received from the health policy and management/centre for global health research ethics committee (hpm / cgh rec) of the university of dublin. potential benefits and hazards participants could benefit from any programmes that may be put in place as a result of this research or by knowing that they are not alone in their feelings and experiences in caring for a cwd. the respondents may be seen as a vulnerable group because of possible stigma and discrimination resulting from their association with children with disabilities. the participants remained anonymous at all times throughout the study to eliminate this. recruitment procedures the researcher used a gatekeeper (staff at the centre) to access participants as she was previously unknown to them. participation was completely voluntary. if potential participants decided to take part having read the information leaflets and signed the consent form they still had the right to withdraw at any time from the study and were informed of this. informed consent possible participants were provided with information leaflets to consider for 7 to 10 days. prior to commencing an interview the respondents were reminded of their right to withdraw and that the interviews would remain anonymous. if a participant chose to take part they were required to sign a consent form prior to being interviewed. data protection all data was only accessible to the researcher and was kept secure and destroyed appropriately. truecrypt encryption software was used to encrypt data collected. any information that identified participants was destroyed and soft copies were deleted. hard copies of data collected were shredded. consent forms and recorded data are stored securely in the centre for global health in trinity college dublin. translators never had open access to the data, only under the supervision of the researcher. all files will be destroyed after five years. trustworthiness top ↑ the findings of this study are based on the human experience as experienced by the participants. reliability considering that this research is qualitative, it cannot be guaranteed that repeating this study would produce the same results. validity vailidity is the accuracy with which a method measures what it is intended to measure (whittemore, chase & mandle 2001). processes and steps in the study are detailed and the use of quotes validates the themes identified. meanings were not extrapolated from data and conclusions were based on evidence. the results are an accurate representation of data developed from a systematic analytic approach. internal validity referring to the rigour of the study is examined through the use of reflexivity, namely, examining the impact of the researcher being present and the perspective from which they carry out their research. possible biases which the researcher has taken into account included being a ‘westerner’ in a developing country because there may have been an expectation from participants that the researcher could provide assistance in some way. discussion top ↑ the main objective of this study was to examine the experiences of carers and parents of cwd in moshi town, tanzania. a range of findings emerged in the form of five themes: (1) objective challenges, (2) subjective challenges, (3) positive experiences, (4) needs identified and (5) coping mechanisms. there are a number of insights that this study contributes to the literature: • although the demands of care are high, parents do not feel burdened or overwhelmed by their children. • the parents do not see the child as the problem. it is the inability to provide for the child that creates the most stress. • carers have a clear idea of what they need in the present and the future to care for their child. • parents do not doubt their parenting abilities. • in moshi, objective burden impacts on carers more than subjective burden. outline of results objective challenges in the form of demands of care, finance and employment emerged. lack of money for both healthcare and necessities are major challenges. such lack of finances and experiences of poverty are supported in studies by hartley et al. (2005) and gona et al. (2011) who discuss the financial costs of caring and how external resources are unattainable. the financial issues stem from lack of employment. lassetter et al. (2007) also concluded that mothers are constrained and have no employment. green (2007) concluded in a study carried out in florida that objective burden has a greater influence on ‘the burden of care’ than subjective burden. a large amount of data on financial challenges was collected; there may have been an expectation that the researcher could provide assistance to participants. objective challenges emerged as one of the most prominent themes within the research, indicating that these issues are experienced regularly. emotional or subjective challenges that emerged from the data included rejection, stigma, discrimination, isolation, worry and pity. rejection by fathers is a major issue which negatively feeds back into decreased job opportunities and increased financial difficulties. hartley et al. (2005) concluded in uganda that in many cases fathers were absent and mothers were primary carers. carers described various experiences of stigma from a range of sources. in their study, mitra et al. (2011) found that stigma results in carers being restricted in activities but only three carers referred to this. most participants showed resilience and determination – they coped with stigma and there were no instances of any participants doubting themselves when they experienced stigma. many carers were worried about the future because of a lack of support. many felt alone and that they were the only ones who understood the needs of their child. high levels of pity reported signify that many members of the community have an understanding that raising a cwd brings with it increased challenges, strains and stresses. on the other hand, it may be also be interpreted as stigma. the national policy on disability (npd) reports high levels of pity, as does this research (ministry of labour 2004). carers identified positive experiences. lassetter et al. (2007) concluded that finding positives posed a challenge to parents of cwd. this was reflected in this research in the delay it took to answer some questions about positive experiences, infact, one interviewee paused and laughed. the positives discussed by carers in this research were not as ‘deep’ as those seen within the extant literature, for example, personal growth, increased sensitivity and a less materialistic focus (hastings et al. 2005). however, the positives discovered cannot be discounted. abbot and meredith (1986) cited in king et al. (2006) identified that positives are found in the small and simple things. this is reflected in this research. one example of a deeper positive experience by these carers, however, is respect. carers of ‘normal’ children do not experience the level of respect that carers of cwd do. in uganda, hartley et al. (2005) divided support into social and physical support. nearly all needs identified in this research were of a material or physical nature, such as financial help and access to supplies, which are both objective. this indicates that the objective burden of care impacts on the carers more than the subjective burden. indeed, when looking at field notes some participants became emotional when discussing objective challenges. a conclusion that can be drawn from the data is that a cause of stress to carers and parents is not being able to meet the material or physical needs of their child. divine interventions, sharing of experiences, learning new skills, external support and the search for a cure were identified by gona et al. (2011) as coping mechanisms. the only overlap with this research was external support. a contradiction between this study and gona et al.’s (2011) was participants’ sharing experiences. an interesting coping mechanism that emerged was parents remaining logical when people reject them and stigmatised against them. these types of attitudes were not expected given the adversity these carers face. coping with objective challenges was difficult. without money these cannot be minimised and in a low-income country where resources are limited and where services for cwd are few, coping with objective burdens is extremely difficult. the findings of this study confirm some findings of previous research, namely, stigma and isolation are common; the demands of care are high for cwd; financial challenges and employment issues are common; carers use various coping mechanisms to deal with the stresses and strains of having a cwd; support systems make caring for a cwd less stressful; the socioeconomic situation of a family impacts on the ability to provide for a cwd and lack of financial support causes stress. practical implications the findings have practical implications and suggest that the design of support systems and peer support groups should be done taking the experiences of carers into account. communication between service providers and carers is important so that the needs of cwd are met but also so that the needs of the parents are met. limitations of the study top ↑ limitations include the possible failure to establish a rapport with participants in an unfamiliar cultural context. this was mitigated by spending several weeks immersed in the culture.the translator used for this research was not a professionally trained one, but had proficiency in both english and the local language. a limitation of this, however, could be that at times there were discrepancies in translations. the researcher acknowledges that back translation should be used to ensure congruence between the source and target languages (yu, lee & woo 2004). however, because of limited resources and time constraints back translation was not used in this research. an additional limitation is that all participants were selected based on their children’s, or the children they care for, attendance at day care centres run by bcc. it is not within the scope of this research to document reasons why other carers do not use the services offered by bcc. the conclusions cannot be extended to well-resourced carers or under-resourced carers in a developed country. the nature of this research is qualitative and as such the results cannot be generalised to a wider population. by having more participants and a wider sample, more themes may have emerged from the data or more insights may have been gained into their situations. a bigger sample may have validated the findings further, however, thematic saturation was reached using the sample size. future research further longitudinal studies to validate the findings of this study are recommended.the use of focus groups in this type of research would provide further insights by providing an opportunity to study the way the respondents collectively make sense of issues. recommendations solomon et al. (2001), cited in gona et al. (2011), identified that a key to coping amongst carers is the building of relationships with others who have the same experiences (i.e. a peer support network). a recommendation from the findings of this research is the setting up of a peer support network for the carers so that they can share their feelings in an open and supportive environment with people who have had similar experiences to them. furthermore, there needs to be an extension of the hours of care provided by day care centres so that parents have more time to earn a living. although there are many external factors that may need to be overcome to enable this, it would help carers deal with the financial issues and reduce the needs identified. it is acknowledged that extending the hours of care provided by the centres run by bcc has challenges, namely, additional staffing and operating costs. setting up of peer networks also has its challenges, namely, finding carers or parents who are willing to be involved at the implementation stage may be difficult. conclusion top ↑ the objective of this study was to gain an insight into how having a cwd has impacted upon participants’ lives, namely, (1) if participants have experienced any negative stigma or discrimination as a result of having a disabled child; (2) if participants experience carer burden and (3) the positive experiences of caring for a cwd. the research followed a qualitative research design using semi-structured interviews. it followed a phenomenological approach that allowed an exploration of how respondents viewed their situation. the research met its objectives and provides some rich insights into the experiences of carers of children with disabilities.negative experiences outweighed the positives in concluding the findings. the study was carried out in a low-income country where resources are scarce and people face adversity in their lives every day, apart from raising a cwd. it was found that the objective challenges of caring are more significant than the emotional challenges. the main contributions of this study are that parents are impacted more by objective burdens than subjective burdens. these carers love their children unconditionally and are dedicated to providing the best life possible for them in the face of adversity. they do not doubt their abilities to care for cwd and they do not feel overwhelmed. they simply have needs in terms of objective challenges. this study provides data to support the development of support programmes. a peer support network would be very beneficial, as well as an extension in the hours of care provided by the centres. acknowledgements top ↑ the author would like to express appreciation to the centre for global health in trinity college, dublin as well as to building a caring community, in moshi town, tanzania. the author would like to thank the parents and carers who took the time to take part in the research – to them a great deal of gratitude. the author would also like 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acta psychiatrica scandinavia 83(364), 77–111 yu, d.s.f., lee, d.t.f., & woo, j., 2004, ‘issues and challenges of instrument translation’, western journal of nursing research 26(3), 307–320. http://dx.doi.org/10.1177/0193945903260554 ajod_5(1)_2016_reviewer_ack.indd reviewer acknowledgement open accesshttp://www.ajod.org page 1 of 2 the editorial team of the african journal of disability recognises the value and importance of the peer reviewer in the overall publication process – not only in shaping the individual manuscript, but also in shaping the credibility and reputation of our journal. we are committed to the timely publication of all original, innovative contributions submitted for publication. as such, the identification and selection of reviewers who have expertise and interest in the topics appropriate to each manuscript are essential elements in ensuring a timely, productive peer review process. we would like to take this opportunity to thank all reviewers who participated in shaping this issue of the african journal of disability: aine kelly alister c. munthali angela ofori-attah anna mcnally anne m. witchger hansen anthea rhoda anthony k. edusei arianna keil berna gerber bonginkosi chiliza brian watermeyer candice hendricks carol m. schall carrie brooke-sumner catherine ward charlotte capri claire penn clare harvey clare hocking colleen howell colleen adnams crick lund daleen klop daniel mont dinah alexander dominic frimberger elsje scheffler erna alant eva beckung farhana karachi federico balague femke bannink frances owusu-ansah francois cilliers frans krige gerard goggin gertrude mafatlane glenda kruss van der heever grayson holmbeck gulam khandaker hans reinders harsha kathard heidi lourens ina wallace jean-francois trani jennifer watermeyer jennifer jelsma jennifer stewart williams john parker julie claassens karen levin karen beauchamp-pryor kimberly cardimona kimberly e. hoagwood kirsty donald kyle paulse lauren graham lidia pretorius lindsay 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website and register as a reviewer. to access your details on the website, you will need to follow these steps: 1. log into the online journal at http://www. ajod.org 2. in your ‘user home’ [http://www.ajod.org/ index.php/ajod/user] select ‘edit my profile’ under the heading ‘my account’ and insert all relevant details, bio statement and reviewing interest. 3. it is good practice as a reviewer to update your personal details regularly to ensure contact with you throughout your professional term as reviewer to the african journal of disability. please do not hesitate to contact us if you require assistance in performing this task. publisher: publishing@aosis.co.za tel: +27 21 975 2602 fax: +27 21 975 4635 african journal of disability reviewer acknowledgement open accesshttp://www.ajod.org stine h. braathen subhasis bhadra subhasis bhadra surona visagie susan hillier susan woolfenden susan bruck sylvia topouzkhanian t j. ellapen theresa lorenzo thomas (tom) e. reynolds todd honeycutt tonya n. davis tsitsi chataika ulrika ferm vivienne bozalek zelda coetzee we appreciate the time taken to perform your review successfully. page 2 of 2 abstract introduction methods results discussion conclusion acknowledgements references footnote about the author(s) makhaya j. malema department of sports, recreation and exercise science, faculty of community health sciences, university of the western cape, bellville, south africa marie e.m. young department of sports, recreation and exercise science, faculty of community health sciences, university of the western cape, bellville, south africa lisa wegner department of occupational therapy, faculty of community health sciences, university of the western cape, bellville, south africa citation malema, m.j., young, m.e.m. & wegner, l., 2023, ‘leisure education to leadership: youth with physical disabilities’ experiences in south africa’, african journal of disability 12(0), a1234. https://doi.org/10.4102/ajod.v12i0.1234 original research leisure education to leadership: youth with physical disabilities’ experiences in south africa makhaya j. malema, marie e.m. young, lisa wegner received: 14 apr. 2023; accepted: 09 oct. 2023; published: 30 nov. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract introduction: young people with physical disabilities frequently lack opportunities to develop their leadership potential. these include their ability to make decisions and be able to take charge of their leisure programmes. an argument is made that developing leadership skills for youth with physical disabilities can be facilitated by participating in leisure education programmes. objectives: the objective of this study was to explore youth with physical disabilities’ perceptions of how leisure education can be used as a tool to develop their leadership. method: this study used a descriptive qualitative research design to collect data using the purposive sampling method from 10 youths with physical disabilities aged 18 to 34 years in the western cape, south africa. one-on-one interviews with semi-structured and open-ended questions were used to collect data for this study. results: the findings of this study include 4 main themes and 11 sub-themes. this study’s findings showed that participants’ perceptions and experiences were evidence of leisure education being used to build their capacity as leaders within their society. furthermore, their understanding of how they apply leadership opportunities is an encouraging moment for their development. conclusion: leisure education should be considered as a means to promote leadership in youth with physical disabilities in south africa. contribution: knowledge and experience about youth with physical disabilities, their leisure education experiences and skills development during activities. keywords: leadership development; leadership skills; leisure; leisure education; youth with physical disabilities. introduction leadership skills are a critical need for all youth, specifically in the context of youth with physical disabilities (ywpd) for this study. there are positive outcomes and influences that benefit a good leader among people in society (kendellen et al. 2016). all leaders encounter challenges, specifically ywpd. despite the known and unknown challenges, they have the ability to influence peers and form groups, which allows them to engage in leisure activities on their own terms. in this study, leadership development is applied in the context of ywpd’s ability to develop and influence relationships and skills among peers in a non-formal setting where leisure education programmes allow them to encourage each other (shaikh, bean & forneris 2019). in an ideal world, ywpd would be independent of leisure service providers and take charge of their leisure programmes to address their needs and challenges. youth with physical disabilities could act as peer models to each other with positive mutual goals when engaged in leisure programmes (brymer & gray 2006). this study forms part of a bigger project of using leisure education as an element for developing leadership capacity among ywpd within the south african context (malema 2022). facilitating leadership-related qualities can be promoted using leisure education programmes such as camping (martin 2018). the study was conducted on adolescents without disabilities in southern indiana, united states of america (usa). the camping programme duration was over 5 to 8 days for 7 weeks. participants were allocated to an adventure camp (adrenaline activities) or a speciality camp (activities focusing on development). daily activities for the adventure groups included ‘swimming, biking, creek hiking, canoeing, rock climbing, zip-lining, arts and crafts, archery, a mud pit, and a low rope course’ (p. 163). speciality camp activities included ‘canoe camp, arts and crafts camp, wilderness camp, and leader in training (lit) camp’ (martin 2018:163). the results of the study indicated that social relationships, identity and self-image, agency and engagement, spirituality, ethicality and morality are significant areas of leadership development during the camp. furthermore, martin found that participants understood leadership according to the latest trends in leadership and positive youth development. lastly, the participants of the study reported positive camp experiences and leadership development initiatives implemented (martin 2018). the findings of the study contributed to knowledge transfer and behaviour change among participants through their experiences and perceptions of each camp programme. another example of leadership facilitation through leisure education programmes is boettcher and gansemer-topf’s (2015) research on students without disabilities who participated in outdoor recreation programmes in illinois, usa. canoeing and kayaking trips as outdoor recreational activities were part of their skills development. the participants in the study reported communication and teamwork as part of their leadership development, as well as planning and organisation, adaptability and decision-making. the participants reported developing the role of empowerment, taking responsibility and individualised meaning. the findings of the study revealed that soft skills such as communication, competence and decision-making as elements of a leader can be nurtured and developed by engaging in leisure programmes (boettcher & gansemer-topf’ 2015). despite the literature mentioned above, no research has been conducted where leadership development for young people with disabilities was the intended outcome, specifically using leisure education as a tool. this study contributes to addressing the knowledge gap about leadership development for ywpd through leisure education. developing leadership through leisure education leisure education is a tool that uses leisure activities, offers information and knowledge, and advances prospects for involvement in free-time activities among all people (fukushina & scwartz 2019; sivan 2014). beland (2008) argued that leisure service providers need to adapt their programmes, especially in communities, to meet the participation needs of people with disabilities. malema, young and wegner (2022) reported that participating in leisure education programmes can allow leadership skills and capacity building among ywpd. furthermore, by participating in leisure education programmes, people are able to explore how they are influenced and impacted on a personal level while they are part of the activities (sivan 2008; wilkinson, kmiecik & harvey 2020). leisure education is argued to be an intermediate factor that could promote participants’ quality of life through engagement and sharing knowledge and information about activities that take place in communities (datillo 2018; sivan 2014). to obtain a feasible outcome from a leisure education programme, there would be a need to have specific, measurable outcomes guided by the appropriate frameworks to promote the programme’s objectives. this study adopts the leisure ability model and the self-management principle as guiding theoretical frameworks. stumbo and peterson (1998) developed a leisure ability model that focuses on therapeutic recreation contexts. the aim of the leisure ability model is to encourage an autonomous, active leisure lifestyle among people with disabilities. the leisure ability model comprises three key domains (see figure 1): treatment, leisure education and recreation participation (stumbo & peterson 1998). the component of treatment is not the focus of this study; rather, leisure education and recreation participation domains are the focus of this study. the component of leisure education is central to this study because it is argued that it can develop leadership skills. in relation to the recreation participation component within the leisure ability model, ywpd will be able to learn skills that are appropriate to their development while they participate in the programmes. figure 1 represents the process of the leisure ability model. figure 1: leisure ability model. this study is based on the premise that leisure education and recreation participation can inspire ywpd to develop their leadership capacity. during recreation participation, ywpd demonstrate how their leisure engagement influences their choices and how this affects their behaviour. leisure behaviour occurs during participants’ engagement in programmes. through people’s leisure behaviour during activity repertoire, which includes attitude, values, needs that arise, knowledge, skills, experience and interest, ywpd can develop leadership skills. the outcome of developing leadership will lead to ywpd having a positive lifestyle. this is enhanced by their ability to engage with others, knowledge sharing and having a positive attitude when they are participating in leisure activities (stumbo & peterson 1998). in summary, the leisure ability model is the cornerstone for advancing an active, independent lifestyle for people with disabilities. people’s leisure choices and participation can facilitate the development of a positive and proper use of time (hutchison & robertson 2012). in this study, an argument is made that ywpd will move from the leisure education phase with knowledge and information and develop the necessary skills; they would then carry on participating freely in recreational activities and then develop leadership skills in the process. self-management as a framework for this study becomes relevant when considering ywpd as responsible for self-development and capacity building (frantz & rhoda 2021). the notion of self-management offers individuals the opportunity to capacitate themselves and have self-reliance and resilience based on the skills and resources that are at their disposal (frantz & rhoda 2021:3). furthermore, people become more comfortable as they continue engaging in various activities, which results in increased self-efficacy (clark & schopp 2021:12). cory, dattilo and williams (2006) stated that positive peer relationship has an influence towards youth’s personal perceptions of their own independence. therefore, when considering leisure education and recreation participation from the leisure ability model and how these are managed by ywpd through their embracing of the self-management framework, developing leadership skills seems inevitable. challenges from leisure and recreation programmes many young people lack suitable prospects to develop their leadership skills, which leads to them exercising decision-making and planning leisure activities on their own terms (lazcano et al. 2021). notably, leisure service providers do not offer their programmes with the intention of building their capacity; rather, they focus on pure participation so that they are not independent of the leisure and service providers (lazcano et al. 2021). dolva, kleiven and kollstad (2014) conducted a study using structured interviews on adolescents with down syndrome in norway. the findings of their study showed that adolescents did not have access to support and develop and participate actively in leisure programmes (dolva et al. 2014). in this study, the researchers posited that ywpd cannot be disregarded as leaders based on their disability. young people’s creativity and courage should be protected so that they can facilitate social change (wegner & majee 2021). in this study context, creativity and social change are perceived as significant factors for a leader, to enable them to explore and influence their peers. a plea is made by balt (2004) that all individuals have a role to play in the african continent’s development. youth with physical disabilities’ contribution can be through embracing self-management skills. self-management focuses on chronic health conditions and community integration (frantz & rhoda 2021), in which physical disability is considered within that context. according to clark and schopp (2021), the responsibility lies with individuals to ensure that they manage their chronic health proactively. it is therefore assumed that the critical skills of self-management can lead to leadership. self-management is an important aspect of ywpd’s leadership development in this study. this study aimed to gain an understanding of how to promote capacity building on ywpd using leisure education as a tool to develop leadership. the objective of this study was to explore ywpd’s perceptions of how leisure education can be used as a tool to develop their leadership. therefore, this study attempts to respond to the research question: what are the perceptions held by ywpd about using leisure education as a tool to develop leadership? methods design a qualitative descriptive research design was used to achieve the aim and objective of this study. the approach used in this study allowed the researchers to gather data and interpret the data based on the viewpoints of the participants (shosha 2012). participants ten participants who met the inclusion criteria were purposefully selected. participants were recruited and selected in liaison with the association for people with disabilities (apd) in the city of cape town municipality in the western cape province, south africa. these were that only ywpd aged 18 to 34 years were included in this study. greeff (2011) proposed that purposeful sampling is useful to researchers to ensure relevant participants with the desired characteristics are identified for the study. their physical disabilities were as a result of accidents, and some were born with a disability. eight participants used wheelchairs for at least 5 years, whereas the two other participants used walking support aids. inclusion and exclusion criteria only ywpd were recruited as participants in this study. participants needed to be able to understand and speak english and comprehend information independently. because of the lack of technical support, participants with additional disabilities (i.e. intellectual, hearing or visual) were excluded from this study. the support level required had the potential to misrepresent the participants’ perceptions, and important information could be lost in the process. piloting a pilot test of the interview questions was done, following an approach called ‘interviewing the investigator’ (chenail 2014). this method requires that the researcher take up a role as a potential study participant and have a qualified qualitative researcher to conduct the interview as part of a mock-interview process (chenail 2014). this allowed the researcher to amend and modify questions that were ambiguous. data collection south africa adhered to the coronavirus disease 2019 (covid-19) safety regulations, and the researcher ensured to follow the guidelines during data collection. the researcher made use of one-on-one interview method with semi-structured, open-ended questions with participants. only one interview was conducted using google meet ™. deakin and wakefield (2013), in their research on the use of skype interviewing, stated that online methods were a useful alternative for face-to-face interviews considering information and communication technology. therefore, considering the climate over covid-19, this method provided a unique and useful alternative while still ensuring thorough engagement between the researcher and participant. ethical protocols were observed to ensure the participants’ rights and anonymity are preserved. participants were interviewed until the data were deemed sufficient. ‘data sufficiency in the study context refers to the point at which categories appear to guide the collected data without further modification’ (varpio et al. 2016). interview questions focused on the participants’ thoughts and views of leisure education and leadership development, as well as the importance that they assigned to leisure from their individual perspectives. a total of 10 individual interviews were conducted with the participants, and each interview lasted a minimum of 45 min. interviews were conducted in a neutral venue that was comfortable and convenient for the participants. the researcher made notes and observations during interview sessions and probed participants throughout. data organisation and analysis permission to record the interviews was sought from participants to allow a verbatim transcription. the first researcher checked the transcripts against the audio recording to ensure all contents were recorded and to promote the credibility of the data. an atlas.ti software was used during data coding and analysis. the data were presented following the thematic analysis approach. this method was appropriate to allow the researchers to identify, analyse and report themes within the data which will be useful when interpreting the findings (braun & clarke 2006). an open-ended coding technique was used wherein the researchers reflected on the process of immersing themselves in the data (matthews & kostelis 2011). to ensure there was no bias, the researchers consulted an independent co-coder to ensure proper themes and sub-themes were reported. trustworthiness to ensure the trustworthiness of the research, the guideline framework proposed by schurink, fouche, and de vos (2011) was applied, which includes credibility, transferability and dependability. credibility in this study was ensured by allowing engagement with participants during data collection, member checking and observations (krefting 1991; merriam 2009; schurink et al. 2011). member checking was used as the data collection and analysis were verified with the participants to ensure transparency and credibility. this allowed the researcher to probe participants for depth and understanding of the topic under investigation. transferability in this study was achieved by thoroughly applying the research methodology and describing the literature context to ensure a detailed account is given (krefting 1991; merriam 2009; schurink et al. 2011). transferability refers to the extent to which the findings are applicable to comparable situations beyond the specific study environment, as determined by the degree of similarity. this study provided a dense and detailed description of the research setting and participants, thus enabling others to decide how the findings may apply in other similar settings. dependability was ensured by using an independent co-coder to discuss the coding processes and reach a consensus to avoid bias and promote neutrality (krefting 1991; merriam 2009; schurink et al. 2011). ethical considerations the study obtained ethical clearance and approval from the university of the western cape’s biomedical research committee (bm20/2/1). eligible participants were given informed consent forms to sign to confirm participation. all information was in english. participants were able to speak, read and understand the language and comprehend information independently. participation in this study was purely voluntary, and the researchers clarified any concerns and questions before data collection; this allowed participants to freely choose to be official participants. pseudonyms were assigned to participants for anonymity purposes. one participant was advised to change the screen name for the online interview to avoid having their personal details captured in the recorded interview. every research endeavour carries a certain level of risk. in this particular study, the researcher clarified that there was a potential for participants to experience discomfort and unease because of their daily challenges. a professional counselling and support session was put in place to ensure participants’ well-being is looked after. for this study, no participant required professional counselling. all participants were respected and valued for their experiences, and the researchers ensured that the environment where data were collected was comfortable, warm and welcoming. results the findings indicate how a leisure education programme can facilitate leadership skills development among ywpd. table 1 reports the demographic information of the participants. additionally, table 2 illustrates the main findings where 4 themes and 11 sub-themes are reported. the main themes identified include leisure for ywpd, the nature of leisure education, leisure education learning areas and leadership opportunities. table 1: demographic information of participants. table 2: overview of the themes and sub-themes. all the participants had been wheelchair users for at least 4 years (through car accidents, gunshots and some since birth). all participants resided in townships (semi-rural), which are classified as having low socio-economic disadvantage. theme 1: leisure for youth with a physical disability leisure is an essential phenomenon with many benefits. this theme describes the youth’s perspective on leisure, the importance of leisure for people with physical disabilities, the role of leisure, the value of belonging that results from being part of leisure activity programmes and what youth can offer during leisure programmes. based on the youth’s perception, leisure is expressed as a human right available to all people, including those with physical disabilities. sub-theme: importance of leisure for youth with physical disabilities participants expressed their perceptions that they are able to benefit from participating in leisure activities and gave an account of how they each experience leisure in a different manner. participants reported the importance of leisure in this sub-theme, reporting that they recognised that leisure promotes healthy living and quality of life. one participant said: ‘it’s [leisure participation] really important for youth with physical disabilities because of anxiety, stuff, like there are all kinds of stuff … illnesses and so on, can affect you by lying around doing nothing.’ (p4, female, 25) another participant expanded on this notion by stating: ‘if i take my situation, it’s basically what keeps me sane; if you’re going to stay indoors, that’s very bad for your mental health. and i think people with disabilities, i wouldn’t say, are more prone to mental health issues because i think everyone struggles with those kinds of things. not just people with physical disabilities, but i think it is very important for anyone to partake in leisure activities, like, extremely important.’ (p9, female, 30) participants were of the opinion that leisure has a significant role in their lives and that people should embrace the benefits of leisure activities. as reported by one participant in this sub-theme, mental health issues are common among people with disabilities. therefore, one participant reported that to keep sane, leisure activities can be a mitigating factor for mental health issues. therefore, it would be important to be actively involved in leisure activities to experience the positive benefits. sub-theme: role of leisure in development leisure plays a significant role in the skills development of participants. the role of leisure has a direct impact on the development of participants. youth with physical disabilities in this sub-theme reported: ‘i think it’s how they can learn that will make them be part of activities, not like sitting at home, not knowing what to do about the condition. because now, this is not a basic thing. it’s not a normal life. it’s a disability. so now, we are not the same as other human beings. so now leisure activity will get us involved here so that these other people can know that i want to do this. i want to reach this. i want to go there for me to achieve this so that they can move forward in life.’ (p2, male, 31) ‘… when there’s fun and joy in your leisure time … helping others or doing activities and so on. it makes you want to do more so you won’t sit back with your coffee cup of coffee … you see an opportunity that i can go from here to there … this was fun, this is good … i enjoyed myself with this leisure time.’ (p4, female, 25) leisure presents an opportunity for participants to develop and apply the skills acquired during leisure programmes. participants illustrated this point as follows: ‘i think if it’s micro-skills or macro skills, or basic skills, or life skills, whatever the case might be, you are enriching people’s lives, you’re adding value to that person’s life …’ (p7, male, 22) ‘you get good at activities just by doing what feels natural for you because practice makes perfect.’ (p8, female, 22) ‘it’s not only your leisure programme stuff that learns, you as a participant also learn, but you also go different organisations, in the department of sports … all these places can promote people to increase your knowledge during leisure programmes.’ (p4, female, 25) the role of leisure in the lives of the participants in this study can facilitate and foster leadership skills development. as expressed by participants, this means that leisure can be experienced as a holistic approach to their overall development. theme 2: nature of leisure education this theme describes how participants perceive the nature of leisure education. participants described leisure education’s meaning, purpose and preferred programme components based on their experience and perception. the nature of leisure education is dependent on each participant’s perception and experience during activity programmes. participants describe the manner in which the nature of leisure education is perceived in their context. sub-theme: meaning of leisure education in this sub-theme, participants describe their personal and subjective meaning and perceptions of leisure education, youth sated that participants 2, 4 and 9 understand leisure education as a way of upskilling themselves and others. they expressed a shared view that during leisure education programmes, people get to enjoy the activities and simultaneously have an opportunity to learn something. they gave examples of reading time and cleaning the park, which could offer a learning opportunity as leisure time activities. participants’ expressions about leisure education indicate that it is not limited to a particular activity for them. it can be subjective according to individual perception. participants further reported that anyone could be involved in leisure education activities for their benefit: ‘i must tell myself that it doesn’t mean that you can’t do anything just because you’re stuck in a wheelchair.’ (p6, female, 24) furthermore, one youth with a physical disability stated: ‘you learn through activities like football, crickets, so on … you’re learning in these sports. you’re learning cooperation and much more.’ (p2, male, 31) participants in this sub-theme expressed their perceptions of the meaning of leisure education based on their encounters and experiences. the participants expressed being engaged in a leisure programme that has meaningful results and a positive outcome. sub-theme: purpose of leisure education programme leisure education can offer a continual learning process that offers participants diverse outcomes and benefits. activities incorporated in leisure education programmes became meaningful to participants’ desired outcomes, as expressed by p1: ‘you can do whatever you want with your time with peace; just remember having fun and learning.’ (p1, male, 23) p7 added, to the notion above by listing meeting: ‘… new people, talk, interact, boost [and] live your life to the fullest [when engaging in leisure activities].’ (p7, male, 22) another participant perceived the purpose of a leisure education programme as: ‘it calls us to come together and brings us together, especially people with disabilities, to sit together to find ways to attain our goals.’ (p6, female, 24) leisure education programmes offer various learning and developmental opportunities in which participants can learn through their programme and activity engagement, as explained in the following two quotations: ‘it is very important because a person with skills could be sitting at home not knowing how much they can do or offer in the community. they don’t know how skilled they are, so maybe through a leisure education programme, all that can be revealed and nurtured …’ (p10, male, 26) ‘my view is not the same as you, you want to reach your goal, and i want to reach my own goal like you want to become a sports person, and i want to become a teacher. so, when we are talking about our fields, you will learn something from my field, and i will learn something from your field …’ (p2, male, 31) three participants emphasised the lifelong learning process in leisure education, stating that: ‘your character becomes the fruit of your life, and people will look up to you and look to you for motivation and inspiration, and obviously, as a leader that leads them. so, i think it is very important to look at your character and attributes and how they develop during leisure programmes.’ (p9, female, 30) additionally, p2 and p8 put an emphasis of a continued learning process which is facilitated by peer teaching. furthermore, they reiterated the purpose of learning from each other so they can benefit their society. when the opportunity arises for ywpd to build their capacity through leisure education programmes, they can use the skills acquired to impact their community, increasing inclusion. sub-theme: programme components leisure programme components can vary depending on the intended outcome. youth in this study wanted to be involved in active leisure education programmes that allowed them to move around and contributed to their overall physical health. youth with physical disabilities expressed in this sub-theme that: ‘… programmes that will improve our limbs, e.g., stretch our arms, our legs. we can try to throw a ball at each other without hurting ourselves … for example, we give you maybe a meter or two, three meters, try to push yourself if you can, doing it independently.’ (p4, female, 25) some participants suggested the following components as activities: p5 suggested activities like swimming, soccer and cricket as leisure activities, and p8 mentioned darts, chess or computer games as ways to: ‘… just to have fun because in that you don’t even know that you’re learning, and you don’t even know that you’re … bettering yourself.’ (p8, female, 22) some participants (p9 and p10) expressed advocating for leisure education programmes that can be undertaken in groups. the participants viewed this notion as a way to unite people and develop the capacity of a person and a team. participants of this study preferred activities that would promote independence, allowing them to take charge and build capacity, learn skills and implement them for themselves. additionally, as reported in this theme, the programme component must cater to a diverse group and outcomes. theme 3: leisure education learning areas experiences gained from leisure education programmes varied according to the setting in which activities took place. through leisure education programmes, different skills can be developed according to the activities participants are exposed to. youth reported how active engagement, motivation, self-development, attitudes and values act as learning opportunities during leisure education programmes. sub-theme: active engagement being part of a leisure education programme requires that participants be active in the process. this would make their participation in activities to be enjoyable and their development to become meaningful and impactful. participants expressed this point as follows: ‘when people are getting engaged in many activities out there, i think that they learn, they learned certain things in life, that way they develop a variety of skills, it becomes part of a developmental phase.’ (p2, male, 31) additionally, ‘so, being involved and part of a particular programme promotes active engagement meaning you are now engaged.’ (p4, female, 25) expanding on this notion, one participant said: ‘knowledge doesn’t come by itself. you know leisure or skill development whenever it feels it can uplift.’ (p5, female, 33) a practical example is given by one youth, who stated that: ‘… being a team member, seeing how the team captain vocalises and expresses their thoughts. so, you learn through that just being there. and you’re, i think, just being around the team, you see the team, how the team interacts and acts with each other …’ (p8, female, 22) in this sub-theme, participants reflected on the benefits of being part of the process of leisure education programmes. participants shared their lived experiences that are important to understand how their involvement in leisure programmes can contribute to their skills development. sub-theme: motivation being inspired as part of leisure education programmes was vital to participants. motivation could stem from internal and external factors. participants are reported saying: ‘seeing someone who is doing that thing is motivation by itself, someone younger, doing something he can, whatever it is that is inspiration … with a right particularly the right mindset.’ (p1, male, 23) additionally, one participant said: ‘motivation is something that you believe in, what you are doing, what you want to … i think motivation is suitable for people with disabilities because it lifts their spirit. it makes them optimistic about what they want in life.’ (p3, female, 28) one participant expands on this, stating: ‘i like to show other youth with disabilities that they can also do it. they must not feel ashamed of themselves and just come and see me doing it.’ (p6, female, 24) participants experience and perceive motivation differently, as reported by one youth, who stated that: ‘the concept of competition is great because it plays into your internal psyche … so, you try to better your opponent, you try to better yourself, you try to do better than before.’ (p8, female, 22) another participant stated: ‘one can find courage by being more confident in who they are … i think that changes in your perspective and life. and that can be motivation, which is almost contagious. so, then you also want to inspire other people and then get them going.’ (p3, female, 28) one way of motivating people is through the sharing of information. a participant articulates this as: ‘when you have the information, you should share it with other people with disabilities, and this is the greatest motivation because people get inspired by the information shared with them. for example, we have a group where everyone informs everyone about the different activities that are taking place.’ (p10, male, 26) participants in this sub-theme reported from first-hand experience how motivation is encountered during leisure education programmes from both internal and external factors. sub-theme: self-development through leisure education, participants develop character. this sub-theme reports participants’ perceptions of the initiatives offered to them for their development. participants stated that: ‘self-development it’s something that you do by yourself to better yourself. so now, i think when you’re telling yourself that you want to develop certain skills in life, and you want to become a knowledgeable leader, and you can inspire someone out there in life.’ (p2, male, 31) giving advice, one participant said: ‘if you fail, people must learn not to fall forever … because there’s always another way to do better in life …’ (p3, female, 28) according to one youth participant: ‘leadership in itself is self-development. we always have to sustain and maintain our skills … maintaining and staying motivated, especially in sports teams.’ (p5, female, 33) one participant suggests that: ‘like if you read, the more you broaden your horizons, i think you’ll be open to new stuff to learn more things to learn new things.’ (p7, male, 22) some participants with an expressive practical application of becoming self-developed stated that: ‘you need to interact with people to learn from them.’ (p8, female, 22) one youth participant added to this perspective: ‘it’s very important to upskill yourself and develop yourself as a leader.’ (p9, female, 30) in this sub-theme, participants demonstrated awareness about what it takes to develop themselves. it is important for youth in this study to realise where they are in their development to assess the level of intervention when necessary. sub-theme: attitudes and values the attitudes and values of both the participants and members of society influence their leisure engagement positively or negatively, as reported by participants in the following quotations: ‘… education is the key, through which leisure education can instil positive attitudes … you get to experience the basics about the influence of an attitude. because if you can adapt your attitude, you can push yourself back if you’re not careful.’ (p1, male, 23) one youth is mindful of the impact of a leader’s ethics, morale and attitude, stating that: ‘what we are focusing on as the main goal is to bring their mindsets or attitudes or beliefs equal as yours just to lead each other around so that we can be equal into the thing together and focus on the same thing.’ (p4, female, 25) the phrase ‘it takes two to tango’ is amplified by one participant who realised that you get what you give, stating that: ‘i don’t call them a boy for all these things. i don’t use the word boy. i never use demeaning words no matter how young i think he is or how much younger they are to me, and i call them bras1.’ (p5, female, 33) one participant stressed: ‘the only disability out there is a bad attitude. if you have a bad attitude, even if you’re physically disabled, whether you are “normal,” or differently-abled, a bad attitude will get you nowhere …’ (p6, female, 24) youth recognised the importance of the choice of words when addressing each other when engaging together in leisure programmes. participants expressed that their values and attitudes during a leisure programme and in their social interaction influence their participation and the people around them. theme 4: leadership opportunities given the opportunity, ywpd can become leaders within their societies and peer circles. through leisure education programmes, leadership roles are assumed and undertaken when assigned. leadership positions might vary in different circumstances. the sub-themes reported in this theme give context based on ywpd’s perceptions. sub-theme: meaning of leadership development the meaning of leadership could vary according to each leader’s role and the type of leadership each person aligns themselves with. in this sub-theme, ywpd reported what leadership development means for them as follows: ‘i think leadership development, it’s whereby you lead, and you lead people. it’s whereby you lead people so they can develop certain skills in life to reach their potential.’ (p2, male, 31). ‘it’s about transferring your skills and knowledge to the other person,’ (p3, female, 28) on the same thinking, one participant said that: ‘you can be a leader by helping others, showing others how to do stuff without having money or something like that. you can start something up from scratch.’ (p4, female, 25) reporting further on this sub-theme, one youth said participants 5, 7 and 9 reiterated that leadership involves leading a group of people, with a common goal. the participants highlighted the need to listen to the needs of the followers, teaching them necessary skills and serving the greater purpose and goal. more importantly, p9 mentioned a servant type of leadership: ‘it’s taking the step of leading the people, listening to their needs, understanding their needs, and how you can help them get these needs sorted … out’ (p5, female, 33) ‘… leadership development is, i think, is to teach people about their skills, the micro-skills, or the macro skills, to develop leadership qualities.’ (p7, male, 22) ‘… leadership to me is more about serving, and then obviously developing that person’s character, leading a group of people, but also primarily serve them.’ (p9, female, 30) leadership has personal meaning for everyone, as stated by participants in this sub-theme. youth experience leadership as leading a group, serving, transferring skills and helping them build their capacity. sub-theme: leadership development platforms the notion that youth would be able to build themselves up if offered appropriate leisure opportunities was expressed by participants under this sub-theme. this study suggests that offering leisure opportunities to youth could enhance their leadership potential. youth with physical disabilities report on their leadership development platforms, saying: ‘… starts in the community, open a group programme, be the leader in your community, open something, and be a leader.’ (p1, male, 23) ‘people with disabilities don’t have to stay in one place. they have to go out there and search for activities that will enhance their skills, and they will have some skills and abilities that will help them in life, which can be through leisure education programmes.’ (p2, male, 31) adding to that, one youth said: ‘these guys need a good role model to change their way of thinking … we have to stand up as the township’s leadership and try to bring new ideas.’ (p6, female, 24) some participants expressed that another platform for developing leadership can be reinforcement strategies: ‘i don’t think people understand the power of positive word through reinforcement, its magic …’ (p5, female, 33) additionally: ‘it’s important to get out of your comfort zone. the world owes you nothing … you can, build people skills, meet new people socialise, build confidence, build self-esteem, build your ego and your development …’ (p7, male, 22) one youth participant raised an important point: ‘there should be a mixture of people, but we don’t want to be excluded. a disabled person is normal just like any other person with rights, that’s how we develop, through integrated programmes.’ (p10, male, 26) opportunities for leadership development can be implemented through communities. as reported by youth, development platforms can be created by meeting new people, integrating programmes and stepping out of one’s comfort zone. discussion this study reported here aimed to explore ywpd’s perspectives on how leisure education can be used as a tool to develop leadership. findings showed that participants recognised the importance of leisure, understood leisure education programmes and learning areas within leisure education programmes and acknowledged the available leadership opportunities afforded through leisure education participation. their participation in leisure education programmes is driven by their desire to demonstrate their ability to be part of activities within their communities, demonstrating their skills and how they develop through leisure activities. such a positive attitude displayed by youth in this study resonates with self-management as a platform for growth and development (frantz & rhoda 2021). the concept of self-management is based on the premise that people can proactively become independent to manage their day-to-day chronic conditions. this includes three essential tasks: medical management, behavioural management and emotional management. the essential tasks are complemented by the five core skills: problem-solving, decision-making, resource utilisation, partnership with providers, and acting (frantz & rhoda 2021). the domains and skills within self-management (e.g. decision-making; planning; social persuasion; locating, accessing and utilising resources; and assisting people in developing relationships) link with leadership skills in this study. this study found that leisure education can offer capacity development in ywpd through various activities. the findings suggest that leisure education can enable ywpd to become active role players during their leisure time. devine (2004) acknowledged that leisure can challenge a person’s existing character and identity. stumbo and peterson (1998) emphasised that getting involved in leisure education programmes instils valuable skills that can positively influence your future participation in these programmes. datilto (2008) suggested that allowing youth to transfer skills and lessons learned outside of their leisure education programmes can be helpful to the participants by closing the gap between knowing how to participate and where to participate, ultimately leading to independence and self-determination in leisure behaviour and choices. the context within which leisure education is created and executed is vital to attaining leisure-related skills, knowledge, attitudes and perceptions (yankholmes & lin 2012). study participants experienced active engagement, motivation, self-development, and attitudes and values that enabled their learning and developmental process to become leaders. participants showed interest in being actively engaged in leisure programmes offered in their communities, including being part of the planning process (sivan 2014, 2017; sivan & chan 2012). participants were motivated during leisure programmes when they saw other people taking part in the activities, which contributed to participants developing their leisure preferences and ensuring fun and enjoyment during leisure programmes (sivan 2014, 2017, sivan & chan 2012). participants experienced self-development through their willingness, abilities and interactions with others to develop their leadership capacities (frantz & rhoda 2021; sivan 2014, 2017; sivan & chan 2012). participants in this study valued their peers, and their attitudes did not change based on the age or culture of their peers, which aim to encourage people to appreciate the importance of leisure, discover its meaning and think positively about it (sivan 2014, 2017, sivan & chan 2012). lazcano et al. (2021) stated that young people in general do not have sufficient opportunities to develop their capacity to make decisions and organise their activities, regardless of the context of the programmes organised. datillo (2018) suggested a generic framework that would make leisure activities available and user-friendly to all people for meaningful participation. it is understood that leisure education presents an opportunity to promote the leisure capacity of participants through training, which can facilitate and increase their leisure competence (datillo & murphy 1991; sivan & stebbins 2016). brymer and gray (2006) stated that a leader requires soft and conceptual skills such as social matters, psychology, communication, sound judgement and creativity. being developed holistically as a leader enables ywpd in this study to thrive in any challenge during leisure time. the researchers argue that ywpd can embrace and develop the fundamentals reported in fulthorp and d’eloia’s (2015) study, which investigated critical competencies for human resource municipal recreation agencies in california, usa. competencies such as: (1) the ability to make ethical decisions, (2) the ability to act professionally, (3) the ability to work well with people, (4) the ability to communicate clearly with others, (5) enthusiasm and a positive attitude and (6) the ability to work in a team environment are important characteristics of an effective leader (fulthorp & d’eloia 2015). as jordan and ramsing’s (2017) reiterated, leaders’ attitudes, words and actions profoundly affect their followers. youth in this study recognised the importance of acquiring leadership skills during leisure programmes as beneficial to their lives. this suggests that youth can benefit from equal opportunities to fulfil their roles as leaders for their peers. it is understood that youth encounter challenges while experiencing and developing themselves as leaders. the study’s findings align with hutchison and robertson’s (2012) proposition that leisure education programmes can prepare ywpd’s transitions in society as they develop leadership skills. this transition is important because it will enable ywpd to navigate their daily lives and livelihoods and deal with challenges as leaders. study participants reported experiences of marginalisation because of a lack of resources, which hindered their ability to develop leadership skills. the skills developed from leisure education create opportunities for choosing from various activities (cory et al. 2006; datillo 1999; datillo, williams & cory 2003; marsden 2010). wilkinson et al. (2020) noted that young people’s socialisation into and through leisure is significantly influenced by external forces such as family, friends and the development of global trends like technology. wegner and majee (2021) proposed that young people with the capacity and skills to manage themselves are better equipped to confront the challenges they face in changing environments. this study contends that ywpd are capable of becoming leaders, and their perceptions are an indication that they build their capacities and develop leadership skills. conclusion study limitations there is a lack of resources and knowledge in south africa regarding leisure education, which, in the context of this study, is perceived as a limitation of this study. availability of resources and knowledge consists of being more specific about the kind of resources and knowledge required. despite limited resources and knowledge about leisure education programmes, the results of this study lay the foundation for capacity development and youth with disabilities’ potential within the south african context. recommendations and practical implications future research is encouraged to consider adapting leisure education with the intention of developing skills for the ywpd. it is further recommended that leisure education service providers, for example, the department of sport, culture and recreation (national, provincial and local level) and non-governmental organisations (ngos) like let’s play, collaborate with youth with disabilities during leisure to ensure that programme planning becomes relevant to participants. the implication of this study is that the leisure service providers are encouraged to provide programmes that allow participants to develop skills while engaged in the activities. for leisure education programmes to be more meaningful, youth should be at the forefront of programme planning to ensure their needs are represented. and considerations should include the nature of the disability that youth live with to facilitate peer relationships and role modelling. acknowledgements profound gratitude to all the participants who participated in this study. this article is partially based on m.j.m’s thesis entitled ‘guidelines for leadership development using leisure education as a tool for youth with physical disabilities in south africa’, towards the degree of doctor of philosophy: sport and exercise science in the department of sports, recreation and exercise science, university of the western cape, south africa on august 2022, with supervisors: prof. l. wegner and prof. m. young. it is available here: https://etd.uwc.ac.za/handle/11394/9245. i confirm that the manuscript submitted for consideration was part of m.j.m.’s thesis work for degree purposes, all authors (m.j.m., m.e.m.y. and l.w.) are the sole authors of this work. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced 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department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa wits-university of queensland critical care infection collaboration group, faculty of health sciences, university of the witwatersrand, johannesburg, south africa ronel roos department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa wits-university of queensland critical care infection collaboration group, faculty of health sciences, university of the witwatersrand, johannesburg, south africa melanie mccree wits-university of queensland critical care infection collaboration group, faculty of health sciences, university of the witwatersrand, johannesburg, south africa samantha quinn department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa mervyn mer wits-university of queensland critical care infection collaboration group, faculty of health sciences, university of the witwatersrand, johannesburg, south africa department of medicine, divisions of critical care and pulmonology, charlotte maxeke johannesburg academic hospital, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation van aswegen, h., roos, r., mccree, m., quinn, s. & mer, m., 2019, ‘investigation of physical and functional impairments experienced by people with active tuberculosis infection: a feasibility pilot study’, african journal of disability 8(0), a515. https://doi.org/10.4102/ajod.v8i0.515 original research investigation of physical and functional impairments experienced by people with active tuberculosis infection: a feasibility pilot study heleen van aswegen, ronel roos, melanie mccree, samantha quinn, mervyn mer received: 09 mar. 2018; accepted: 03 apr. 2019; published: 13 aug. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: tuberculosis (tb) remains a significant healthcare problem. understanding physical and functional impairments that patients with active tb present with at the time of diagnosis and how these impairments change over time while they receive anti-tb therapy is important in developing appropriate rehabilitation programmes to optimise patients’ recovery. objectives: the aim of this study was to assess the acceptability, implementation and practicality of conducting a prospective, observational and longitudinal trial to describe physical and functional impairments of patients with active tb. method: a feasibility pilot study was performed. patients with acute pulmonary tb admitted to an urban quaternary-level hospital were recruited. physical (muscle architecture, mass and power, balance, and breathlessness) and functional (exercise capacity) outcomes were assessed in hospital, and at 6 weeks and 6 months post-discharge. descriptive statistics were used to analyse the data. results: high dropout (n = 5; 41.7%) and mortality (n = 4; 33.3%) rates were observed. limitations identified regarding study feasibility included participant recruitment rate, equipment availability and suitability of outcome measures. participants’ mean age was 31.5 (9.1) years and the majority were human immunodeficiency virus (hiv) positive (n = 9; 75%). non-significant changes in muscle architecture and power were observed over 6 months. balance impairment was highlighted when vision was removed during testing. some improvements in 6-minute walk test distance were observed between hospitalisation and 6 months. conclusion: success of a longitudinal observational trial is dependent on securing adequate funding to address limitations observed related to equipment availability, staffing levels, participant recruitment from additional study sites and participant follow-up at community level. participants’ physical and functional recovery during anti-tb therapy seems to be limited by neuromusculoskeletal factors. keywords: tuberculosis; physical function; muscle cross-sectional area; hiv; muscle mass. introduction tuberculosis (tb) remains a very significant and pertinent healthcare problem. it is currently the leading cause of mortality associated with a single infectious pathogen globally, and one of the top 10 causes of death worldwide (who 2018). in 2016, close to 10.5 million people fell ill with tb and 1.7 million people succumbed to the disease. patients with human immunodeficiency virus (hiv) disease are at substantially increased risk of acquiring tb, with 40% of all hiv deaths related to tb (who 2018). in south africa, tb is the overall number one cause of mortality (statistics south africa 2015), and scores of patients with tb are admitted to hospitals and seen in clinics on a daily basis. many of these patients are, however, successfully treated for tb and survive to hospital or clinic discharge. over the past several years, increasing attention has been focused on the sequelae [a condition which is the consequence of a previous disease or injury] that survivors of acute illness may experience, such as impairments in functional status and quality of life (qol) (azoulay et al. 2017; biehl et al. 2015; connolly et al. 2015; elliott et al. 2011; fan 2012). in addition, there may be serious social and economic consequences and ramifications (griffiths et al. 2013). these elements are frequently overlooked (gaudry et al. 2017). patients with active tb infection report deficits in their physical and mental well-being, and it is suggested that symptoms such as fatigue, loss of weight, loss of appetite, fever and bodily pain may impact their ability to function in society (atif et al. 2014). patients who receive anti-tb therapy undergo prolonged treatment (up to 9 months) and are reported to experience anxiety and fear of social exclusion as they are viewed as being an infection source in the community that they live in (guo et al. 2009; kibrisli et al. 2015). the impact of pulmonary tb on patients’ qol has been widely reported. patients with tb experience low levels of physical and mental health-related aspects of qol at the time of disease diagnosis (atif et al. 2014; babikako et al. 2010; guo et al. 2009; kastien-hilka et al. 2017; louw et al. 2012). anti-tb therapy significantly improves all aspects of qol (babikako et al. 2010; kastien-hilka et al. 2017); however, after successful completion of anti-tb therapy, these patients’ health-related qol remains significantly lower than that of the general population (atif et al. 2014; guo et al. 2009). other factors such as level of dyspnoea, low body mass index and unemployment have been related to decreased levels of physical and mental health-related qol in patients with pulmonary tb (atif et al. 2014; kastien-hilka et al. 2017; masumoto et al. 2014). furthermore, functional impairments, such as balance and gait abnormalities, have been linked with hiv seropositivity (bauer et al. 2005; fama et al. 2007; trenkwalder et al. 1992). problem statement the high incidence and prevalence of tb and hiv in south africa necessitate research into the effect of these diseases on patients’ physical and functional status. research shows that people with tb suffer from long-term limitations in physical and mental health-related aspects of qol as well as limitations in their exercise capacity, often because of compromised lung function (cole et al. 2016; guessogo et al. 2016; guo et al. 2009; kastien-hilka et al. 2017; sivaranjini, vanamail & eason 2010). the impact of the symptoms of tb on patients’ muscle function in relation to muscle architecture, mass and power at the time of disease diagnosis and changes in these parameters during anti-tb therapy has not been quantified to date. in addition, the impact that these changes in muscle architecture, mass and power may have on patients’ ability to balance and their exercise endurance has not been reported previously. rationale of the study the evidence that is currently available on limitations in exercise capacity and pulmonary function of south african patients with pulmonary tb reports on patients who have been on anti-tb therapy for several months prior to testing (cole et al 2016; de grass, manie & amosun 2014). understanding and quantifying the level of physical (level of breathlessness, muscle architecture and mass, muscle power, balance) and functional (exercise capacity) impairments that patients with active tb infection present with at the time of disease diagnosis may be useful to physiotherapists in developing appropriate rehabilitation programmes for these patients during their hospital stay and after discharge to optimise their recovery to a comparable level with that of a healthy general population at the time of completion of anti-tb therapy. clinical trials, using a longitudinal design, are often limited by high patient dropout rates after hospital discharge (abshire et al. 2017; roos, myezwa & van aswegen 2013; van aswegen et al. 2010). this feasibility study was, therefore, conducted to assess the acceptability, implementation and practicality (bowen et al. 2009) of conducting a prospective, observational and longitudinal trial in an urban setting of a developing country to describe physical and functional impairments of patients at the time of active tb diagnosis and to evaluate changes in these outcomes over the 6-month period of anti-tb therapy. research method design a feasibility pilot study was conducted to test the study objectives. subjects and setting patients admitted to the infectious diseases ward or the general intensive care unit (icu) at charlotte maxeke johannesburg academic hospital (cmjah) with active tb infection were considered for participation in this project. charlotte maxeke johannesburg academic hospital is an accredited central university-affiliated quaternary-level government hospital in johannesburg that offers a range of specialist inpatient and outpatient services to residents across gauteng and neighbouring provinces. diagnosis of tb was made through patient clinical presentation, radiological investigations and on-site access to genexpert for confirmation of pulmonary tb. a sputum sample was sent for genexpert for all patients with suspected tb and results were obtained on the day of testing. urine lipoarabinomannan (lam) testing and tissue biopsy were performed for select patients when deemed appropriate to assist with diagnosis. physiotherapy service provision at cmjah involved inpatient management only and no post-discharge physiotherapy services were offered to patients with tb without neurological symptoms. post-discharge follow-up of participants was done at the physiotherapy department movement laboratory on the university of the witwatersrand education campus in parktown, which is situated opposite cmjah. a consecutive sampling method was used to recruit participants for this feasibility pilot study. both male and female patients 18 years or older, with or without hiv seropositivity, who were diagnosed with active tb infection were approached regarding possible participation. subjects were not considered for participation if they had tb meningitis, were unable to stand and walk without assistance, had recent neurosurgery or head injury with loss of consciousness for more than 10 min, recent orthopaedic injury to the lower limbs, amputation, diagnosed major comorbidity (rheumatic disease, malignancy, psychiatric disease, cirrhosis or epilepsy, chronic obstructive pulmonary disease), ocular disease or vestibular disorders. the study was conducted over a 15-month period and all eligible patients who provided consent were included. participant recruitment for baseline hospital assessment was performed over a 12-month period (may 2016–may 2017). six-month follow-up assessments for all participants were completed by august 2017. instrumentation two of the researchers (h.v.a. and s.q.) performed testing on all participants. prior to the pilot study these researchers underwent training in the use of all of the instrumentation listed below. balance the berg balance scale was used to assess participants’ balance. it is a 14-item objective measure that assesses static and dynamic balance and risk for falls in adults. item-level scores range from 0 to 4, and scores for each item are added together to determine each participant’s score achieved out of a maximum score of 56. it is a reliable and valid tool for the assessment of balance in a variety of populations, including those with respiratory diseases (oliveira et al. 2013). two additional balance tests with the addition or removal of vision as a balance strategy were included. these tests were standing on one leg with the hip held at 90° (marching position) for 10 s, and single-leg squat. these tests were added as it was anticipated that there might be a ceiling effect of the berg balance scale scores in this patient population. the timed up-and-go (tug) test was used to assess functional balance. it assesses a participant’s ability to stand up from a chair, walk 3 m, turn around, walk back to the chair and sit down. it also assesses the time in which these activities are completed. duration of greater than 13.5 s predicts a high risk of falls. the tug test is a widely used reliable and valid tool for the assessment of functional balance (steffen, hacker & mollinger 2002). exercise capacity the 6-minute walk test (6mwt) was used to determine participants’ exercise capacity. it is a functional walk test that assesses the distance a person can walk on a flat surface in 6 min using a 30-m track. instructions on performance of the 6mwt, as outlined by the american thoracic society guidelines (2002), were implemented. the 6mwt is a well-known reliable and valid tool for the assessment of exercise capacity in a wide range of patient populations, including those who suffer from respiratory diseases (sivaranjini et al. 2010). the distance a person achieves on the 6mwt should be interpreted against their predicted distance achieved with regard to age and gender, using reference equations for a healthy population. there are currently no reference equations for healthy south africans. therefore, for this study, the reference equation published by gibbons et al. (2001) for healthy adults aged 22–68 years was used to calculate predicted distance achieved on the 6mwt. level of dyspnoea level of dyspnoea was assessed using the modified borg (0–10) scale. the higher the score, the more limited a participant’s function would be as a result of dyspnoea. it is a reliable and valid tool for the measurement of level of dyspnoea in patients with respiratory diseases (kendrick, baxi & smith 2000). muscle architecture and mass ultrasound imaging was used to assess muscle cross-sectional area (csa), thickness (mass) and echo intensity. a dp-6600 model digital ultrasonic diagnostic imaging system (shenzhen mindray bio-medical electronics co., ltd.) with a 5-mhz curvilinear transducer and a large footprint (≥60 mm) was used. b-mode was selected to image each participant’s rectus femoris and vastus lateralis muscles of their dominant leg. these muscles form part of the quadriceps muscle group and play an important role in facilitating hip flexion and knee extension actions, while a person performs physical activities such as walking, running and jumping. measurements were done with on-screen callipers. muscle csa was measured (mm2) in the transverse image plane using the on-screen calliper to manually outline the inner echogenic line that represented the fascia around the rectus femoris muscle (figure 1). muscle thickness was measured (mm) as the distance between the superficial and the deep fascia at the widest distance of the rectus femoris muscle. echo intensity (measured as %) was obtained in the longitudinal ultrasound image plane, where a region of interest was selected in the vastus lateralis muscle without any bone or surrounding fascia (figure 2). the validity of ultrasound imaging as an effective technique to detect musculoskeletal disorders and muscle tissue trauma was described previously by pillen (2010) and strasser et al. (2013). figure 1: example of measurement of cross-sectional area of the rectus femoris muscle of a healthy individual using on-screen callipers of the ultrasound diagnostic imaging system. figure 2: example of measurement of echo intensity of the vastus lateralis muscle of a healthy individual using on-screen callipers of the ultrasound diagnostic imaging system. muscle power the medical research council sum score (mrc-ss) was used to assess muscle power. the power of three predetermined upper extremity and three predetermined lower extremity muscle groups is assessed bilaterally on a scale of 0–5, where 0 represents no visible muscle contraction and 5 represents normal muscle power (against gravity and resistance). the maximum score that can be achieved is 60 with normal muscle power reflected by a score closer to 60/60. the mrc-ss is a widely used reliable and valid tool to assess muscle power in various patient populations, including patients with acute illness (connolly et al. 2013; vanpee et al. 2014). procedure patient admissions into the infectious diseases ward and the general icu were monitored by one of the researchers (m.m.c.). potential participants were identified by the nurse in charge of the unit. the researcher (m.m.c.), in the presence of the charge nurse, approached these potential participants to screen them for eligibility against the inclusion and exclusion criteria as soon as their condition had stabilised. detailed explanation of all tests and procedures involved were provided to participants. they were given 24 h to consider participation before written consent was obtained (by m.m.c.). demographic information (age, gender, date of admission, date of commencement of anti-tb medication, etc.) was obtained from the medical file of each consenting participant. a short interview was held (by m.m.c.) with each participant, while they were seated comfortably in bed or in a chair, to obtain additional information (e.g. diagnosed comorbidities, living conditions, employment status, level of physical activity, smoking history and alcohol use prior to admission). the information collected from each participant was used as a baseline assessment. at the start of the assessment, each participants’ level of dyspnoea was assessed with the modified borg scale and recorded. for ultrasound imaging, participants were placed in a supine position on their hospital bed with both knees extended but relaxed and toes pointing to the ceiling (neutral rotation). the scanning site for the rectus femoris muscle was determined by identifying the mid-point on the line from the greater trochanter of the femur to the knee joint line. a generous amount of ultrasound contact gel was placed on the skin surface over the scanning site before the transducer was placed over this site applying minimal pressure. the transducer was placed perpendicular to the femur to visualise the rectus femoris muscle and obtain baseline measurements for muscle csa and thickness. the transducer was placed parallel to the femur to visualise the vastus lateralis muscle to obtain baseline measurements for echo intensity. two measurements for each outcome were taken and the average of each of these measurements was recorded (pillen 2010; strasser et al. 2013). muscle power was assessed with participants sitting upright over the edge of the hospital bed. the mrc-ss was used to assess power of shoulder abduction, elbow flexion and wrist extension movements of bilateral upper extremities. hip flexion, knee extension and ankle dorsiflexion power were assessed for both the right and left lower extremities. because the mrc-ss involves volitional muscle testing, strong verbal encouragement was given to each participant during the test (connolly et al. 2013). scores obtained for each muscle action were recorded. thereafter participants were given an opportunity to rest (approximately 3 min) before their balance was assessed with the berg balance scale and the two additional balance tests. this involved participants performing various predetermined activities in sitting and standing by the bedside to assess static and dynamic balance and risk of falls. next, functional balance was assessed with the tug test. participants were asked to sit in an upright chair by their bedside. a stopwatch was used to measure the total duration for participants to stand up from the chair, cover the 3-m distance, turn around, return to the chair and sit down. the time to completion of the test was recorded and a note was made of any assistive devices that the participant used during the test. lastly, the 6mwt was performed to obtain information on distance walked and percentage of predicted distance achieved. prior to the test, participants were allowed to rest seated in a chair for 5 min. their baseline heart rate, blood pressure and peripheral oxygen saturation values were measured (ssem mthembu medical noninvasive blood pressure patient monitoring device with spo2) and recorded. thereafter the test was commenced. participants were instructed to walk at a comfortable pace of moderate intensity to ensure as much distance as possible is covered and that an adequate exercise response was obtained during the test. encouragement to participants during the walk test was given strictly according to the prescribed guidelines (american thoracic society 2002). walk distance achieved, changes in heart rate, blood pressure and peripheral oxygen saturation together with post-exercise level of dyspnoea were recorded immediately after the test and again after 5 min of rest. at the end of the session, the researcher gave each participant an appointment date and time for the next assessment at 6 weeks post-discharge, together with her contact details and a map to the university of the witwatersrand education campus physiotherapy department to make the location of the test venue clear. the researcher confirmed each participant’s contact details with them as well as contact details of their relatives or neighbours to allow for post-discharge reminders to be sent to them regarding their next appointment dates and times. two weeks prior to their next appointment they were telephoned by the same researcher to remind them of the appointment and 2 days before the appointment they received a text message reminder in an attempt to improve compliance. at the 6 weeks and 6 months follow-up appointments, one of the researchers (h.v.a. or s.q.) verified each participant’s details and demographic information with them and changes in details were recorded. all outcome measures assessed during hospitalisation were repeated at both of these assessment points. data analysis the data obtained were nominal, ordinal and ratio in nature. data analysis was performed using ibm® spss version 24 for windows software and intention-to-treat analysis was done. missing data for those who were still alive but dropped out of the trial were managed through last observation carried forward. descriptive statistics were used to present the data and normality of data was tested using the shapiro–wilk test. categorical data were summarised as frequencies and percentages. continuous data were presented as mean, and standard deviations (sd) for normally distributed data and median and interquartile range (iqr) for non-normally distributed data. to determine changes in outcomes over time, anova with repeated measures with a greenhouse–geisser correction was performed using bonferroni confidence interval adjustment. the level of significance was set at ≤0.05 with a 95% confidence interval (ci). no regression analysis was performed because of the small sample size. ethical considerations permission to conduct the study was obtained from the university of the witwatersrand human research ethics (medical) committee (certificate number: m150857) and the hospital review board. the study was registered with the south african national clinical trials registry (trial number: doh-27-1215-5241). the principles for conducting research on human subjects, as outlined in the declaration of helsinki, were adhered to throughout the duration of the trial. results sixteen participants were enrolled into the study during the 12 months of the recruitment period. figure 3 summarises participant recruitment and flow through the study. some participants were excluded at baseline assessment because of confirmed diagnosis of tb meningitis, stroke or physical disability. four of the 12 participants died after hospital discharge because of causes unrelated to the study procedures, and this resulted in an overall mortality rate of 33.3%. a high dropout rate of 41.7% (n = 5) was observed over the 6 months of the observation period. figure 3: participants recruitment and flow throughout the study period. the mean age of participants (n = 12) was 31.5 (9.1) years. reported symptoms experienced before admission varied widely and included shortness of breath, vomiting, headaches, feeling disoriented, tiredness and night sweats. only two participants were admitted to icu and had a mean duration of stay of 1.1 (2.3) days. one was lost to follow-up after hospital discharge and the other died before the 6 weeks follow-up assessment. participants were commenced on anti-tb therapy on average within 2 days from admission. most were managed with first-line anti-tb therapy (rifafour and ethambutol), but two presented with drug-resistant tb and were managed with ethionamide, isoniazid and pyrazinamide. the median duration of hospitalisation for the whole group (n = 12) was 6.5 (iqr 4.8–16.5) days. table 1 summarises the demographic information obtained for the study. the majority of participants were female (n = 10, 83.3%) and most participants (n = 9, 75%) presented with pulmonary tb and were hiv seropositive (n = 9, 75%). the majority of participants (n = 8, 66.7%) did not partake in exercise prior to admission and none of the participants reported a history of smoking. few participants had returned to employment at 6 months. table 1: demographic information of the study cohort (n = 12). muscle architecture, mass and power findings for muscle csa, thickness and echo intensity are summarised in table 2. results are presented for nine participants only during hospitalisation as the ultrasound machine was unavailable for three participants’ assessment because of another study for which it was used at the time. the greatest change in mean muscle csa (110.3 mm2) occurred between the 6 weeks and 6 months of assessments, whereas the greatest changes in mean muscle thickness (2.3 mm) and mean echo intensity (5.2%) occurred between the hospital assessment and 6 weeks follow-up. changes observed for these parameters over the 6-month period were, however, not significant (csa: p = 0.2; thickness: p = 0.19; echo intensity: p = 0.18). table 2: results for rectus femoris and vastus lateralis muscles with respect to muscle cross-sectional area, thickness and echo intensity using diagnostic ultrasound imaging. the mean mrc-ss during hospitalisation for this cohort (n = 10) was 51.2 (1.7; 95% ci, 49.4–53; range: 49–53), which changed to 52 (3.2; 95% ci, 48.7–55.3; range: 49–56) at 6 weeks (n = 7), with a mean mrc-ss of 52.8 (4.1; 95% ci, 48.5–57.2; range: 49–58) at 6 months post-discharge (n = 6). a mean change in muscle power of 0.8 was observed between hospital assessment and 6 weeks follow-up and between 6 weeks and 6 months post-discharge, respectively. the changes observed in mrc-ss over the 6-month period were not significant (p = 0.3). balance assessment balance was assessed with the berg balance scale and the tug test. the mean berg balance scores were 53.7 (2.1; 95% ci, 51.5–55.8; range: 51–56; n = 10), 54.5 (1.9; 95% ci, 52.5–56.5; range: 51–56; n = 7) and 54.7 (2; 95% ci, 52.6–56.7; range: 51–56; n = 6), respectively, at the three assessment points. four of the 10 participants (40%) managed to achieve the highest score (56/56) at hospital assessment. the greatest change in mean scores (0.8) was observed between the hospital assessment and 6 weeks follow-up. the changes observed in mean berg scores over the 6-month period were not significant (p = 0.18). during hospitalisation, participants completed the tug test in a mean duration of 10.2 (1.8; 95% ci, 8.3–12.1; range: 7.4–11.9; n = 9) s. at 6 weeks they completed the test in a mean duration of 9.5 (2; 95% ci, 7.4–11.7; range: 7.2–11.9; n = 7) s and at 6 months in 9.8 (2.4; 95% ci, 7.3–12.4; range: 5.3–11.9; n = 6) s. none of the participants used an assistive device during the tug test assessment at any of the three assessment points. a high risk of falls was identified in only one participant during hospitalisation and in no participants at 6 weeks or 6 months after discharge. the greatest change in mean tug test duration (0.7 s) was observed between hospital assessment and 6 weeks. the changes observed in tug test duration over the 6-month period were not significant (p = 0.36). results for the additional balance tests performed with eyes open and eyes closed are presented in table 3. it was noted that participants’ ability to balance was drastically decreased when they were asked to perform each of the two tests with their eyes closed. this was observed at all three assessment points. table 3: additional balance test results with eyes open and eyes closed. level of dyspnoea the mean borg score during hospitalisation (n = 10) was 1.5 (1.4; 95% ci, 0.1–2.3; range: 0–3), which represented ‘very slight’ and ‘slight’ breathlessness. the mean score changed to 1 (0.9; 95% ci, 0.1–1.9; range: 0–2) at 6 weeks (n = 7), and 1.1 (1.2; 95% ci, −0.2 to 2.3; range: 0–3) at 6 months (n = 6) post-discharge, which represents ‘very slight’ breathlessness. the greatest change in mean borg scores (0.5) was between hospitalisation and the 6 weeks follow-up assessment. the changes observed in modified borg scores over the 6-month period were not significant (p = 0.31). exercise capacity the 6mwt was performed over a 10-m distance on the hospital ward because of lack of open space available. at 6 weeks and 6 months, a 30-m track was used in the physiotherapy department as recommended by the american thoracic society (2002) guidelines. participants’ results are summarised in table 4. the greatest change in mean distance walked (103.7 m) was observed between the hospital assessment and the 6 weeks follow-up assessment. there was a reduction of 62.1 m in mean distance walked between the 6 weeks and 6 months of assessments. the greatest improvement in percentage of predicted distance achieved (14.2%) was observed between hospitalisation and the 6 weeks follow-up assessment. between the 6 weeks and 6 months of assessments, participants achieved less of the percentage of predicted distance walked (8.4%) on the 6mwt. the changes observed in distance walked and in percentage of predicted distance achieved over the 6-month period were not significant (p = 0.13 and p = 0.14, respectively). there was reduction in mean peripheral oxygen saturation levels between rest and immediately after completion of the 6mwt of −0.14% at hospital assessment. this changed to −3.1% at 6 weeks and −2% at 6 months. after 5-min rest, there was an improvement in mean peripheral oxygen saturation levels of 4.3%, 3.7% and 3% at the three assessment points, respectively. table 4: results for exercise endurance as measured with the six-minute walk test. discussion this study was conducted to assess the acceptability, implementation and practicality of conducting a prospective, observational and longitudinal trial in an urban quaternary-level hospital setting to evaluate physical and functional impairments of patients diagnosed with active tb infection. in addition, preliminary findings on changes in muscle architecture, mass and power, level of dyspnoea, balance and exercise capacity over the study period are presented. acceptability in feasibility studies refers to how participants in a trial react to an intervention (bowen et al. 2009). participants in this study were keen to perform the tests used to assess their levels of physical and functional impairments while in hospital. no adverse events occurred as a result of any of the test procedures. a high dropout rate (n = 5, 41.7%) was, however, observed over the 6 months follow-up period. attempts made by the researchers to prevent loss to follow-up such as written information given to participants regarding appointment dates and times and venue prior to discharge, and reminder telephone calls and text messaging seemed to be unsuccessful in some cases. some participants provided contact details during the hospital assessment session that proved to be incorrect after they were discharged as their mobile phone numbers were not in service. in some cases the calls made went unanswered. during telephonic conversation, some participants who dropped out of the study after hospital discharge commented that they did not have the financial means to return to the test venue for follow-up assessments. this was stated despite the fact that funding was in place to reimburse participants for their travel costs from home to the wits university education campus for follow-up assessment. this information was verbalised to them prior to hospital discharge. others stated that they felt too weak to endure the travel journey from their homes to the test venue. high loss to follow-up experienced in rehabilitation-based trials in gauteng province of south africa is not unusual (roos et al. 2013; van aartsen & van aswegen 2018; van aswegen et al. 2010). roos et al. (2013), when screening physical activity levels and physical activity preferences of relatively healthy hiv individuals attending an hiv roll-out centre in johannesburg, observed a dropout rate of 27.3%. in contrast, van aswegen et al. (2010), when evaluating the effect of penetrating trunk trauma and mechanical ventilation on the recovery of adult survivors after hospital discharge, noted a dropout rate of 46% in their study participants who required less than 5 days of mechanical ventilation during hospital stay. van aartsen and van aswegen (2018) reported a 54.2% dropout rate over a 6-month period while investigating changes in biopsychosocial outcomes in a mixed cohort of icu survivors in south africa. the reasons for participant dropout listed by the abovementioned authors are similar to those experienced in this feasibility study. the strategies employed during this study to retain study participants after hospital discharge are supported in the literature (abshire et al. 2017). those participants who completed the feasibility study verbalised a positive attitude towards their participation as they valued seeing small improvements in their own physical and functional abilities over the 6-month period. follow-up of participants at local community clinics or at their homes, instead of at a centralised urban venue, would reduce the distance travelled by participants and could present a possible solution to overcoming the financial constraints and levels of fatigue that some participants experienced. implementation in feasibility research investigates the extent, likelihood and manner in which an intervention can be fully implemented as planned (bowen et al. 2009). a large portion of participants achieved the highest score on the berg balance scale during initial hospital assessment. an instrument presents with a ceiling effect if more than 15% of participants achieve the highest possible score (terwee et al. 2007). this suggests that the berg balance scale might not be sensitive enough to accurately detect balance disturbances in this patient population; however, the sample size for this study was small and therefore findings should be interpreted with caution. alternatively, the y-balance test might be more appropriate for this patient population as it assesses dynamic balance. its reliability and effectiveness has been demonstrated in middle-aged and older healthy females (lee et al. 2015), but not in patients with tb. the walking distance available in the ward setting of this quaternary hospital for the 6mwt was problematic. there was only a 10-m distance of relatively open free space available at the back of the ward over which the walk test could be performed. this might have led to sub-optimal participant performance because of the frequent turning enforced by the shorter track (van aartsen & van aswegen 2018). consideration should, thus, be given to using an alternative test to assess participants’ exercise capacity in hospital such as the 3-min step test. this exercise test can be performed by a patient’s bedside and might give a more accurate assessment of exercise capacity than the 6mwt during hospitalisation. as few participants in this study presented with balance disturbances at their initial assessment in hospital, the 3-min step test may be a suitable alternative for the assessment of exercise capacity. practicality in feasibility research explores the extent to which an intervention can be delivered when resources, time and commitment may be constrained in some way (bowen et al. 2009). during the 12 months of recruitment period, of the 26 patients screened, only 16 patients agreed to participate in the study. the rate of recruitment from this single study site was slower than initially anticipated. consideration should, thus, be given to involving more hospital sites from which potential participants can be recruited for a longitudinal study. the relatively high post-discharge mortality rate observed during this feasibility study (33.3%) was concerning as it creates challenges for participant retention when using a longitudinal study design. this would be another motivating factor for involving more than one study site for longitudinal trials. limited availability of the ultrasound imaging equipment was problematic and therefore purchase of one additional device is recommended. the young cohort in this study presented with small non-significant improvements in muscle power over the 6-month observation period. skeletal muscle power is dependent on skeletal muscle mass, composition and architecture (strasser et al. 2013). higher echo intensity reflects more intramuscular fat deposition and fibrous tissue formation in healthy older people (strasser et al. 2013). the greatest increase in muscle thickness and power and decrease in muscle echo intensity for this cohort occurred between hospital assessment and assessment at 6 weeks. an increase in physical activity is associated with decreased muscle echo intensity and increased muscle thickness in patients recovering from critical illness (parry et al. 2015). this is confirmed by the present study’s physical function capacity findings of an increase in distance walked on the 6mwt between hospital assessment and assessment at 6 weeks post-discharge. most participants were employed prior to admission, but few had returned to employment following discharge. few participants reported that they exercised regularly prior to admission and few had taken up exercise activity by 6 months after discharge. the changes in muscle architecture, mass and power observed over the 6-month period were not significant as participants seemed to lead a sedentary lifestyle; however, these findings can also be attributed to the small sample size. there was a gradual increase in distance walked and percentage of predicted distance achieved on the 6mwt over the 6-month period compared with baseline findings. however, the mean distance achieved at 6 months was still significantly shorter than that reported for a healthy south african cohort (n = 40; 662 ± 78.3 m) (van aswegen et al. 2010). the reduction in peripheral oxygen saturation observed immediately after the 6mwt could imply that participants suffered a certain degree of exercise hypoxia, which might have influenced their performance on the 6mwt (sivaranjini et al. 2010). the level of breathlessness experienced by participants in this study was very slight and none of them reported a smoking history prior to admission, which might explain the greater improvement in distance achieved on the 6mwt after hospitalisation. the majority of participants in this study had hiv seropositivity. this might be a factor that influenced their performance on the 6mwt in relation to distance achieved when compared with the healthy sa cohort (van aswegen et al. 2010). it is known that exercise capacity in hiv positive subjects is lower compared with healthy populations when assessed with the 6mwt (oursler et al. 2006). factors reported to have an influence on 6mwt distance findings in hiv cohorts are inspiratory muscle weakness, older age, current smoking status, airflow limitations, peak oxygen uptake and active tb (pontotoring et al. 2010). roos et al. (2014) reported a distance walked of 540.7 (11.05) m on the 6mwt for a relatively healthy hiv positive group with risk factors for cardiac disease attending an outpatient hiv clinic in gauteng. in the present study, participants were discharged home because their conditions stabilised. it is known that a change of 30–50 m in distance walked on the 6mwt has clinical significance in the chronic cardiac and chronic pulmonary disease populations and positively impacts their survival. there is currently no data available for minimal clinically important differences in distance achieved with the 6mwt for patients with pulmonary tb or hiv seropositivity. the difference in distance achieved (42 m) on the 6mwt between hospitalisation and 6 months observed in this study might be clinically significant, but needs confirmation in a larger trial. participants found the additional one-leg stance and one-leg squat balance tests challenging to perform especially when vision was removed. sanchez-sellero and soto-valera (2016) found an association between three anti-tb therapy drugs and the development of vestibular and visual dysfunction. the drugs specified included ethambutol, pyrazinamide and isoniazid (sanchez-sellero & soto-valera 2016). because none of our participants reported a diagnosed vestibular disorder at the time of recruitment, and were managed with these specific anti-tb drugs, it is possible that this had an influence on how they performed during the more challenging balance tests over the 6-month period. this phenomenon needs to be verified in a larger trial. participants presented with good functional balance as none of them used an assistive device to walk during the tug test or when performing the 6mwt. only a small change in duration to test completion was detected during the 6-month period for the tug test. bohannon (2006) proposed reference values for the tug test duration for healthy elderly people. the lowest age range reported on in that review was 60–69 years with a duration of 8.1 (range 7.1–9) s to test completion. in comparison, our younger tb cohort took longer to complete the tug test at all three assessment points. their performance is, however, comparable to that of a large cohort of icu survivors who completed the tug in 9.1 s at 3 months post-discharge (denehy et al. 2014). it is possible that participants in the current study suffered from more sarcopenia than the healthy elderly group, and thus the longer duration observed for completion of the tug test. conclusion findings from this feasibility pilot study suggest significant budget implications to ensure the success of a prospective observational and longitudinal trial as additional testing equipment would need to be purchased, more research staff would need to be employed and trained to recruit participants from multiple test sites and to conduct follow-up assessments at community level. additional travel costs would also need to be considered. recovery of physical function in this small cohort seemed to be affected by neuromusculoskeletal parameters (muscle architecture, mass and power; exercise capacity, and complex balancing activities) more than by respiratory symptoms particularly between 6 weeks and 6 months of anti-tb therapy. recommendations the abnormalities detected in rectus femoris and vastus lateralis muscle composition and limitations observed in general muscle power, complex balance activities and exercise capacity in this small cohort of patients on anti-tb therapy motivate for further exploration in longitudinal trials, provided that adequate funding can be secured. findings from such longitudinal trials can be used to lobby for extension of rehabilitation services provided to this patient population, beyond hospital discharge, to optimise their physical and functional recovery at completion of anti-tb therapy. acknowledgements the authors would like to thank those who participated in this project for their time and willingness to be assessed. they would also like to thank the medical and nursing staff of cmjah for their support of this project and shaèmen ross for the technical assistance provided. competing interests the authors have declared that no competing interests exist. authors’ contributions h.v.a. conceptualised the research topic, performed data collection and analysis, and contributed to the writing up of the article. r.r. co-conceptualised the research topic, performed data interpretation, and contributed to the writing up of the article. m.m.c. was responsible for subject recruitment and data collection, and contributed to the writing up of the article. s.q. assisted with the data collection and contributed to the writing up of the article. m.m. co-conceptualised the research topic and contributed to the writing of the article. funding this study was supported by funds made available from the wits-university of queensland critical care infection collaboration group. data 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centre for augmentative and alternative communication, faculty of humanities, university of pretoria, pretoria, south africa mats granlund children, health, intervention, learning and development (child), faculty of health science, jönköping university, jönköping, sweden swedish institute for disability research, school of health and welfare, faculty of health and welfare, jönköping university, jönköping, sweden christine imms department of paediatrics, faculty of medical, dental and health sciences, the university of melbourne, melbourne, australia lin jun shi children, health, intervention, learning and development (child), faculty of health science, jönköping university, jönköping, sweden swedish institute for disability research, school of health and welfare, faculty of health and welfare, jönköping university, jönköping, sweden school of nursing, tianjin medical university, heping district, china lin ju kang graduate institute of early intervention, chang gung university, tao-yuan, taiwan the department of physical medicine and rehabilitation, chang gung memorial hospital, linkou, taiwan ai-wen hwang graduate institute of early intervention, chang gung university, tao-yuan, taiwan the department of physical medicine and rehabilitation, chang gung memorial hospital, linkou, taiwan karina huus children, health, intervention, learning and development (child), faculty of health science, jönköping university, jönköping, sweden swedish institute for disability research, school of health and welfare, faculty of health and welfare, jönköping university, jönköping, sweden citation arvidsson, p., dada, s., granlund, m., imms, c., shi, l.j., kang, l.j. et al., 2021, ‘structural validity and internal consistency of picture my participation: a measure for children with disability’, african journal of disability 10(0), a763. https://doi.org/10.4102/ajod.v10i0.763 original research structural validity and internal consistency of picture my participation: a measure for children with disability patrik arvidsson, shakila dada, mats granlund, christine imms, lin jun shi, lin ju kang, ai-wen hwang, karina huus received: 31 may 2020; accepted: 01 mar. 2021; published: 28 may 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: picture my participation (pmp) intended to measure participation, defined as attendance and involvement in everyday situations, of children with disabilities, particularly in lowand middle-income settings. objectives: to explore structural validity of pmp by identifying possible subcomponents in the attendance scale and examining internal consistency of the total score and each subcomponent. method: a picture-supported interview was conducted with 182 children, 7–18 years, with and without intellectual disability (id). frequency of attendance in 20 activities was rated on a four-point likert scale (never, seldom, sometimes and always). results: an exploratory principal component analysis extracted four subcomponents: (1) organised activities, (2) social activities and taking care of others, (3) family life activities and 4) personal care and development activities. internal consistency for the total scale (alpha = 0.85) and the first two subcomponents (alpha = 0.72 and 0.75) was acceptable. the two last subcomponents alpha values were 0.57 and 0.49. conclusion: the four possible subcomponents of pmp can be used to provide information about possible domains in which participation and participation restrictions exist. this study provided further psychometric evidence about pmp as a measure of participation. the stability and the utility of these subcomponents needed further exploration. keywords: lowand middle-income countries; everyday functioning; picture supported interview; cognitive support; self-ratings. introduction the participation construct is considered as an essential reflector of an individual actual function in real life and should therefore be researched in clinical practices and specifically in relation to disability and health (united nations 2006; united nations general assembly 1989; world health organization [who] 2001, 2007). participation and participation restrictions, defined as involvement and problems with involvement in everyday activities, respectively, are key components of social inclusion and exclusion (united nations 2006; united nations general assembly 1989; who 2001, 2007). whilst participation is generally agreed to be an important outcome for children, there is a lack of appropriate self-report measures of participation for children (adair et al. 2018; rainey et al. 2014). article 12 of the convention of children’s rights (united nations general assembly 1989) highlights the right of every child to formulate their own opinions and express them freely in accordance with their maturity and age. however, whenever information on children was included in research concerning lowand middle-income countries (lmics), researchers have relied mainly on proxy ratings by adults in these children’s lives (carroll-lind, chapman & raskauskas 2011; lygnegard et al. 2013; schlebusch et al. 2020). exclusion of the opinions of children with complex disabilities, including cognitive impairment and communication difficulties associated with autism and intellectual disability (id) (american psychiatric association [apa] 2013), is particularly evident, because they are often dependent on proxy persons to express themselves. a child’s rights perspective demands children to be asked about their own experiences and perceptions, even if they have an intellectual impairment or communication difficulties (huus et al.2015; oosterhoom & kendrick 2001). when endorsing an integrative and multidimensional understanding of functioning and health for individuals with disability, participation can be considered as a reflector of the interaction between body impairments and societal barriers (arvidsson et al. 2014; imms et al. 2017; who 2001, 2007). an integrative approach towards disability attempts to highlight actual interaction within their everyday context and consider support structures and any impairment (e.g. cognitive impairment) (american association on intellectual and developmental disabilities [aaidd] 2010; buntinx & schalock 2010). for individuals with id, the experience of participation can be assessed by self-ratings in everyday activities and can be operationalised by the frequency of attendance and/or intensity of involvement (arvidsson et al. 2014; arvidsson & granlund 2018; granlund et al. 2012; huus et al. 2015). the attendance aspect is related to being able to be present in life situations or activity settings and is related to the individual’s right to be socially included and to actually take part in the same activities as any other citizen. the attendance aspect is also relevant when, for instance, focusing on participation at a group and/or societal level (arvidsson et al. 2014; granlund et al. 2012). the intensity of involvement is a reflector of how participation is actually experienced in the activity. involvement is relevant when focusing on the experience of participation and thus for individual interventions, for example, in individuals with id (arvidsson et al. 2014; arvidsson & granlund 2018; granlund et al. 2012; huus et al. 2015). picture my participation (pmp) is a self-report instrument that was specifically designed to capture the two aspects of participation, namely, attendance and perceived involvement in children and youth with mild id in 20 different activities related to home, social life and community (arvidsson et al. 2020; bolton et al. 2020). the items were selected by reviewing existing participation measures, participation and environment measure for children and youth (pem-cy), children’s assessment of participation and enjoyment and preferences for activities of kids (cape) and matching items to the un convention of children’s rights (khetani et al. 2014; king et al. 2004; mandich et al. 2004). in addition, the selected items were reviewed in relation to resource-poor environments to identify areas that are not covered by measures, which are developed in high-income settings. finally, items were linked to international classification of functioning, disability and health – version for children & youth (icf-cy) codes to make sure that the activities selected included activities that could be considered important and relevant in lmic settings and representative of the activity and participation chapters of the icf-cy (who 2007). the contents of the 20 activity items of the pmp instrument were found to be valid for children and youth living in an lmic (in this case, south africa), as well as for children and youth with id in both an lmic (south africa) and a high-income country (hic) (sweden) (arvidsson et al. 2020). whilst the instrument seemed promising in terms of appropriate content, additional psychometric properties such as test-retest reliability, structural validity and internal consistency require exploration. the current paper focuses on aspects of structural validity of the pmp, as defined by mokkink et al. (2010b:9), that is, the degree to which the scores of an instrument are an adequate reflection of the dimensionality of the construct to be measured. for the pmp, it applies to using the instrument as a tool for gathering knowledge about the attendance aspect of participation in different settings and in different countries. participation is best conceptualised as the frequency of attendance in different activities and is best seen as a participation profile where attendance will vary between different types of activities or subcomponents (arvidsson et al. 2020; imms et al. 2017). several studies, for example, ullenhag et al. (2014) reported that children with disabilities tend to participate less in out of home activities than other children and also less in informal activities with peers. thus, the main aim of this study was to explore the attendance aspect of pmp regarding structural validity by identifying and describing possible subcomponents, that is, type of activities for which indices could be created to obtain a participation profile. an additional aim was to explore the internal consistency for the attendance aspect of pmp (all 20 items of the attendance scale) and for the subcomponents (provided that subcomponents are identified by the structural validation). participation instruments especially designed to fit for activities in lowand middle-income settings are lacking (schlebusch et al. 2020). evidence from this study is important for supporting decisions regarding whether, and how, scores from pmp can be collated to summarise participation attendance levels as a profile of type of activity usually seen in low-income settings. materials and methods design this cross-sectional, instrument validation study was designed according to the consensus-based standards for the selection of health measurement instruments (cosmin) principles (mokkink et al. 2010b) to explore the structural validity of the pmp and the internal consistency of the attendance scores. settings to obtain data on the utility of the pmp measure for countries with different cultures and income levels, data were collected in south africa, taiwan, mainland china and sweden. in south africa, the study was conducted in a city of approximately 200 000 inhabitants, in taiwan in one city with approximately 2.6 million inhabitants, in mainland china in two cities with 7.6 and 15.6 million inhabitants, respectively, and in sweden in two cities with approximately 100 000 inhabitants each. participants an instrument with universal utility is valid and reliable under different circumstances. the purpose of the sampling strategy was to ensure variation in the samples in terms of age, gender, country/context, socio-economic circumstances and level of disability. in addition to targeting samples from four different countries, we sought children with mild id from all four countries. children with typical development (td) were for reasons of convenience recruited only in south africa. children with td were recruited to obtain variation of participation also within lowand middle-income setting. consequently, five subgroups of children were recruited: (1) children with id in south africa (n = 99), (2) children with td in south africa (n = 37), (3) children with id in mainland china (n = 20), (4) children with id in taiwan (n = 30) and (5) children with id sweden (n = 20). a total of 182 participants were recruited. descriptive data for each subgroup and for all participants as a total are presented in table 1. table 1: descriptive data regarding gender, age and picture my participation total scores for the five subsamples and for all participants together. inclusion criteria children were eligible for inclusion if they had been diagnosed with id and attended a school for children with id, as confirmed by their caregivers. children with either id or td also needed to meet the following criteria to be included: (1) aged between 7 and 18 years, (2) able to speak and understand english (in south africa), swedish (in sweden) or mandarin (in mainland china and taiwan), and (3) assented to participate in the study. for all children, the legal caregiver had to give consent for their child to participate. variables and measurements all the data were collected by clinical researchers who conducted structured interviews or by specially trained postgraduate students with knowledge about the target group and the pmp. data related to participant characteristics, including date of birth and gender, were collected using a parent-report survey. picture my participation the participation instrument pmp (arvidsson & granlund 2018) was back-translated (ullenhag et al. 2014) from english into swedish and mandarin. this instrument is designed for children and youth aged from 5 to 21 years and it measures participation in 20 home and community activities (see table 2). furthermore, the pmp, which is administered as a picture-supported one-on-one interview with a child, comprises four sections: frequency of attendance for each item, rated on a four-point likert scale (never, seldom, sometimes and always) selection of the three most important activities according to the child perceived involvement (by the child) in these three activities, rated on a three-point likert scale (not involved, somewhat involved and very involved). in this section, the children were also asked if there was any other activity that they would select as important, besides the 20 activities that were asked about in the pmp evaluation of perceived barriers to and facilitators of participation in relation to the activities that were the most important to the children. table 2: descriptive statistics of the principal component analysis based on all picture my participation items. administration took 20 to 30 min for each child. for the purposes of this study, only data from section 1 (frequency of attendance) were used. data collection the pmp was completed as part of structured interviews in which graphic symbols from the aided symbol set of picture communication symbols (pcs™) were used (fuller & lloyd 1997). these symbols are available as part of the boardmaker™ software program developed by mayer-johnson, llc (mayer-johnson 2015). picture communication symbols ™ were used during the child assent procedure and as part of the pmp instrument. a specific picture-supported interview approach, called talking mats™, was used (cameron & murphy 2002). the talking mats™ framework is a strategy to facilitate conversations with persons with disabilities and communication with children with id. the strategy involves placing a mat (a piece of carpet measuring 49 cm × 34.5 cm) in front of the child. in the bottom section of the mat, the child can place their pcs™ symbols for the different activities to indicate their responses. three trial items were provided to facilitate the children’s understanding of the attendance ratings and to ensure that they understood the instructions. the children were asked (with respect to each attendance construct), ‘how often do you participate in daily routines?’ and at the same time, they were shown the pcs™ symbol of the routines. for the ratings of attendance, one mat was divided into four equal columns using masking tape. the upper section contained the visual scale that represented the four-point likert scale items, depicted with pictures of baskets of apples: ‘never’ (showing an empty basket with no apples), ‘seldom’ (showing a basket with two apples), ‘sometimes’ (showing a basket with five apples) and ‘always’ (showing a basket completely filled with apples). the child had to place the pcs™ symbol on the mat in the column to indicate the item that they felt best represented the frequency of their participation. the researcher recorded the child’s response on a separate score sheet and moved on to the next question until all 20 items were completed. non-contingent feedback was provided. data were collected in the same way for all five subgroups of participants. data analysis participant characteristics were summarised descriptively. the four-point likert scale for measuring attendance was prepared with the following values: 1 = never, 2 = seldom; 3 = sometimes, 4 = always; total scores were calculated by averaging responses to each item. total scores were summarised descriptively for each subsample and for the total sample. all statistical analyses were performed using spss 24.0. principal component analysis an exploratory principal component analysis (pca) was used as the extraction method to explore the dimensionality of the scale and investigate possible subcomponents of the pmp. in this pca, 19 of the 20 items were used. the item ‘paid and unpaid employment’ was excluded based on the experience of the data collectors. no child was attending any activity that could be considered as employment and most of the children were confused by the question. the rotation method used was varimax with kaiser normalisation and the result was that the rotation converged in nine iterations, eigenvalues >1. subcomponents children’s attendance in different activities tends to vary between type of activities with certain types being more commonly attended universally (e.g. within family activities), whilst others may vary depending on economical circumstances (e.g. organised leisure activities outside home) (arvidsson et al. 2020). the 19 pmp items comprising the identified four subcomponents were discussed to consider the theoretical and practical relevance of the item clustering and interpretability of the statistical result by a panel of 12 researchers. this multidisciplinary panel included the authors of this article and other researchers in the field of disability research and early childhood intervention. the similarities of the items within each of the four subcomponents and the differences between the four subcomponents were discussed. after a final discussion, the contents of the four subcomponents were described. internal consistency cronbach’s alpha coefficients were used to calculate the internal consistency of the total scale of the pmp and for any identified subcomponents. alpha values greater than 0.70 are considered to demonstrate adequate internal consistency (terwee et al. 2007). ethical considerations ethical approval for the study was obtained from the ethics committees and boards in each of the four participating countries (university of pretoria , south africa, reference number: gw20180301hs; tianjin medical university , people republic of china, reference number: tumec20140201; regionala etikprovningsnamnden, sweden, reference number: 2017/234-32; chang gung medical foundation, irb number: 201600861b0) and from the relevant local departments of education and school principals. informed consent was obtained from every child’s primary caregiver and consent was also sought from every participating child in each of the countries involved in the study. results participant characteristics are presented in table 1. descriptive statistics regarding pmp are based on total scores. principal component analysis table 2 presents the descriptive statistics for each item. the steps followed in the exploratory pca are shown in tables 3–4. the kaiser-meyer-olkin measure of sampling adequacy was 0.841 and bartlett’s test of sphericity showed approximate chi-square 729 425 (degrees of freedom [df] 171, sig. < 0.001). principal component analysis extractions with total variance explained, with initial eigenvalues and after rotation, are presented in table 3 and figure 1. the pca extracted four components from the children’s responses and these results are presented in table 4. the four suggested subcomponents were labelled and described as follows. figure 1: component matrix demonstrating four components that are evident in the data set. scree plot. table 3: principal component analysis extraction with total variance explained, with initial eigenvalues and after rotation. table 4: principal component analysis – rotated component matrix. subcomponent 1: organised activities this subcomponent includes the following six activity items: trips and visits, organised leisure, cleaning at home, health centre (visits to), gathering supplies and shopping. it involves events or pursuits that a group of people are doing together in a structured way. this implies that there is a collective structure to the activity rather than it being performed as an individual activity. subcomponent 2: social activities and taking care of others this subcomponent includes the following seven activity items: playing with others, caring for family, spiritual activities, celebrations, caring for animals or pets, social activities and meal preparation. it involves events or pursuits that bring members of the community together. subcomponent 3: family life activities this subcomponent includes the following three activity items: family time, family mealtime and quiet leisure. it involves events or pursuits that bring members of the family together. subcomponent 4: personal care and development activities this subcomponent includes the following three activity items: school, personal care and my own health. it refers to both basic self-care tasks of bathing, dressing, personal hygiene and grooming, as well as more complex tasks related to health and education. internal consistency the internal consistency calculated by cronbach’s alpha for the total scale was 0.85. cronbach’s alpha for the subcomponent organised activities was 0.72, for social activities and taking care of others, it was 0.75, for family life activities, it was 0.57 and for personal care and development activities, it was 0.49. this indicates that the internal consistency was adequate for the total scale and for the two subcomponents, organised activities and social activities, and taking care of others but questionable for the two subcomponents, family life activities and personal care and development activities (terwee et al. 2007). discussion the main aim of this study was to explore the structural validity of the pmp instrument. the results of the pca identified four subcomponents, namely, organised activities, social activities and taking care of others, family life activities and personal care and development activities. following a discussion by an expert panel, these four subcomponents were confirmed as relevant ways of clustering activities into subcomponents of participation for children. internal consistency was acceptable for the total scale and for two of the four subcomponents: organised activities and social activities and taking care of others. for the other two subcomponents – family life activities and personal care and development activities – internal consistency was lower. this is partly explained by the low number of items in those two scales, which makes them sensitive to small variations. another explanation might be related to how latent constructs were defined. the labels of the subcomponents were partly based on whether the included items seemed to occur within an overarching context (such as activities in an everyday family context for the subcomponent family life activities) or with an assumed underlying purpose to strengthen the child’s autonomy in everyday life (such as in personal care and developmental activities). hence, the labels strived to reflect a common theme of the included items, but did not necessarily indicate that they shared conceptually strong links. taking care of personal hygiene is, for example, not strongly related to attending school, but children being independent in personal hygiene more frequently tend to attend school. the link to patterns of attendance rather than to only a psychometric ‘similarity’ illustrates the need for adopting a clinimetric approach as a supplementary aspect to psychometric properties (fava, tomba & sonino 2012; feinstein 1983; marx et al. 1999). the aim of a psychometric approach is to develop scales that measure single perceived characteristics that have a resemblance in what they signify and such scales should be considered homogeneous (hwang et al. 2013; marx et al. 1999; nunally & bernstein 1994). the essence of a clinimetric approach is its reliance on the perceptions of informants, patients and clinicians concerning similarities using every day reasoning (feinstein 1983; marx et al. 1999) as discussed here. in addition to the relatively high structural stability (high component loadings) that the items had in these subcomponents, they also made sense clinimetrically. these two subcomponents may consist of items that from a clinical perspective are interrelated (non-routine activities taking place in the home and personal routines), but they may not have strong relationships at an item level. when evaluating scale properties using both statistical and theoretical perspectives, often, there are choices to be made that can influence which items will be clustered together into a scale. in this study, a four-component solution in the pca was supported by both theoretical and statistical perspectives. statistically, a two-component solution is probably as good as a four-component solution (see scree plot, figure 1). however, if two components were used, they would have been so broad that they might be difficult to use for identifying and explaining patterns in participation such as differences in attendance between family life activities and organised leisure. according to the scree plot (figure 1), the four-component solution is statistically adequate and it was clinically appropriate. in many participation measures, items are divided based on where the rated activities take place – at home or in society – and/or based on the type of activity, for example, leisure activity and social activities (adair et al. 2018). this type of ‘pre-determined’ categorisation sometimes makes it difficult to create independent components with strong evidence for latent constructs. as can be seen in table 4, some items had relatively higher statistical loadings (i.e. the item correlates relatively high with the subcomponent) on more than one component, for example, the item ‘mealtime preparation’ loads moderately both on subcomponent 2 (social activities and taking care of others) and on subcomponent 3 (family life activities). this forces instrument developers to think not only in terms of psychometric properties but also about the way in which items should be clustered in subcomponents to make clinical and practical sense. this clinimetric approach (fava et al.2012; feinstein 1983; marx et al. 1999) may lead to some items being grouped in a subscale based on a certain purpose, for example, leisure activities, without those items having a necessarily high statistical relationship to the subscale. to illustrate, it is not probable that a high frequency of collecting stamps will be strongly related to a high frequency of playing football, although both can be categorised as leisure activities. it is argued that when questionnaires focused on measuring participation are developed, both the clinimetric and psychometric properties are considered together. the identified four subcomponents are discussed from the perspective of psychometric properties, latent constructs, clinical utility and clinimetric properties. firstly, the subcomponent organised activities contains six items with only one item having a component loading lower than 0.5, indicating that organised activities was a psychometrically sound subcomponent. all the items have one thing in common – they ask about organised activities that have a clear aim and a distinct beginning and end. many of these activities are performed by a small group of people. the activities occur regularly but might not be scheduled. children with mild id can attend these activities and can be assigned tasks of different complexity, based on the skills and functioning level required by the activities. thus, this subcomponent also seems to have clinimetric relevance because it may inform clinicians about what activities to target for intervention by discussing the result of the assessment with children and care providers. secondly, the subcomponent social activities and taking care of others contains seven items, of which five have a component loading of 0.5 or higher, which indicates relatively sound psychometric support for the subcomponent. what the items have in common is that they contain a social interactive aspect. however, one item (‘meal preparation’) also has a relatively high loading on the subcomponent family life activities. the item ‘mealtime’ also loads relatively high on family activities and ‘mealtime preparation’ can occur as a household task even if you are alone. however, as this measure is developed for children, it makes sense that children approach the preparing of food potentially in collaboration with others and as an opportunity to socialise. thirdly, the subcomponent family life activities contains three items. all of these items describe activities that occur in a family environment and probably involve close family. all items have a component loading of over 0.5 and illustrate a subcomponent that makes sense both psychometrically and clinimetrically. both family activities (family time and family mealtime) containing social interactions with family members and an activity that probably occurs without much ongoing social interaction, ‘quiet leisure’, are included. the activities are characterised by the child participating in activities in the home that are outside routines and organised activities. the last subcomponent, personal care and development activities, contains three items all focused on taking care of your own person (health, personal care and school), with ‘my own health’ having a lower loading (0.4) than the other two items. overall, the psychometric soundness is somewhat lower than for the other subcomponents. clinimetrically, the subcomponent makes sense, although in a latent way. ‘school’ has a high loading together with ‘personal care’ and indicates an environment that is supportive of routines and autonomy probably enhances all individual routine activities. the pmp was used to gather the child respondents’ own views about their participation in everyday activities. in developing the instrument, special focus was placed on making sure that children with cognitive problems, which might affect their understanding of items and scales in a questionnaire, could participate in the study. this was established by the three trial items in first step of the pmp procedure. this procedure facilitated the establishment of the children’s understanding of the concepts and of understanding the instructions. another focus was to make sure that the items asked were relevant in low-resource settings and for varying cultural groups. for this reason, heterogeneous groups of children were sought for the validation: those with id, td, from different countries and from both high-income and lowor middle-income settings, across a fairly broad age group (7 to 18 years). however, another less explicit but shared characteristic was that all the participants, in different ways, experienced participation and participation restrictions in their everyday lives. the need and right to experience participation can be considered universal amongst all children and according to the who and united nations childrens fund (unicef), all children also have the right to express their perceptions of such participation (carroll-lind et al. 2011; united nations 2006; united nations general assembly 1989; who 2001, 2007). data from this study, in which children with varying levels of id across varying cultural settings were able to complete the pmp and thereby report on their own participation attendance, suggest that pmp can be a useful tool for understanding and targeting participation outcomes. strengths and limitations in designing the study, consideration was given to reducing the risk of bias, including sampling adequacy (sample size > 100 and seven times the number of items), appropriateness of the analysis methods and clarity of description of procedures (mokkink et al. 2010a). the sampling strategy of this study was to strive for variation in terms of age, gender, country and/or context, socioeconomical circumstances, etc. this variation might have limited the psychometric outcomes. a larger sample within each ‘group’, rather than reducing the variation, would have been the best way to produce a more robust instrument in terms of psychometric properties. it can, however, also be a strength to test the validity of pmp in diverse contexts. future directions this study contributes evidence of validity in children with mild id: future directions include testing validity in other disability groups. it is challenging to assess participation in children with disabilities (coster & khetani 2008; lygnegard et al. 2013). to generate knowledge about children’s perceived participation, the assessment method has to be individually adapted, for example, to deal with special needs related to communication problems and to the child’s everyday life. another challenge is to be ethically cautious about the validity of an instrument. concerning the pmp, further research is needed, concerning adjustment for use with children with disabilities other than id and recruitment of larger samples to allow for performing a confirmatory factor analysis to validate the identified subcomponents. in addition, further evidence of stability of the items and scales is needed. as stability may be affected by the natural variation of a child’s everyday functioning in different life situations related to environmental factors and the variation in children’s interests and preferences (aaidd 2010), future test-retest reliability studies will need to consider how to control these factors. usefulness of pmp for child-centred clinical purposes in intervention planning rather than as a screening tool also needs to be trialled. conclusion in this study, the structural validity of the pmp was explored by identifying possible subcomponents in the attendance scale and examining internal consistency of the total score and of each subcomponent. an exploratory pca extracted four subcomponents: organised activities, social activities and taking care of others, family life activities and personal care and development activities. internal consistency for the total scale and the first two subcomponents were acceptable. the four subcomponents of pmp can be used to provide information about possible domains in which participation and participation restrictions occur. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions p.a., s.d., m.g., c.i., l.j.s., l.j.k., a-w.h and k.h. all contributed equally to this work. funding information this project was jointly funded by the south african national research foundation (nrf) (101566) and the swedish foundation for international cooperation in research and higher education (stint) (sa2015-6253). data availability the data that support the findings of this study are available from the corresponding author, s.d., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the author and do not 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epidemiology 60(1), 34–42. https://doi.org/10.1016/j.jclinepi.2006.03.012 ullenhag, a., almqvist, l., granlund, m. & krumlinde, l., 2014, ‘differences in patterns of participation in leisure activities in swedish children with and without disabilities’, disability and rehabilitation 36(6), 464–471. https://doi.org/10.3109/09638288.2013.798360 united nations, 2006, convention on the rights of persons with disabilities, united nations, new york, ny. united nations general assembly, 1989, convention on the rights of the child, 44/25 cfr, united nations, geneve. world health organization (who), 2001, international classification of functioning, disability and health, world health organization, geneva. world health organization (who), 2007, international classification of functioning, disability and health – version for children & youth (icf-cy), world health organization, geneva. abstract introduction the challenges associated with disability aims of the study method results discussion theoretical and practical implications limitations and future recommendations conclusion acknowledgements references about the author(s) linda olivier school of psychosocial behavioural sciences: psychology, north-west university, potchefstroom, south africa paula sterkenburg department of clinical child and family studies, vrije universiteit amsterdam, amsterdam, the netherlands amsterdam public health research institute (aph), amsterdam, the netherlands bartiméus, doorn, the netherlands esmé van rensburg school of psychosocial behavioural sciences: psychology, north-west university, potchefstroom, south africa citation olivier, l., sterkenburg, p. & van rensburg, e., 2019, ‘the effect of a serious game on empathy and prejudice of psychology students towards persons with disabilities’, african journal of disability 8(0), a328. https://doi.org/10.4102/ajod.v8i0.328 original research the effect of a serious game on empathy and prejudice of psychology students towards persons with disabilities linda olivier, paula sterkenburg, esmé van rensburg received: 19 oct. 2016; accepted: 31 oct. 2018; published: 28 mar. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: much has been done regarding the promotion of equality in rights in terms of legislation, but persons with disabilities remain marginalised in society. negative attitudes and prejudice contribute towards numerous challenges for persons with disabilities. objectives: this study investigated the level of empathy and prejudice of students towards persons with disabilities, and the effect of the use of a serious game to enhance empathy and reduce prejudice. method: a randomised controlled experiment with pre-test, post-test and follow-up test was used. availability sample (n = 83) of psychology university students (22% males; 78% females) was divided into an experimental group that played the serious game the world of empa and two control groups. the first control group received texts on case studies and information on reacting in a sensitive and responsive way, and the second control group received no intervention. results: participants have average levels of empathy (score: 32 to 52) and strong prejudice (score: 0.08 to −0.87) towards persons with disabilities. the intervention results in a slight short-term effect for prejudice and sub-scale measurements of empathy. a slight improvement was noted in participants’ ability to transpose themselves imaginatively into the experience of disabled characters. conclusion: the findings contribute to the understanding of empathy as a dynamic component that can be positively influenced by, for example, a serious game. these results have teaching implications on the facilitation of empathy. the short-term effect on empathy and prejudice towards persons with disabilities may contribute to bridge the inequality experienced by persons with disabilities. keywords: empathy; prejudice; serious games; persons with disabilities; psychology students. introduction during the 1990s, south africa experienced transformation on various levels, and even brought forth a new constitution that aimed to liberate the rights of persons with disabilities – enabling them to compete more equitably for health care funding and raising awareness for their needs (kromberg et al. 2008). south africa reached new frontiers by being one of a few countries to include disability issues in their constitution by enshrining civil and political rights for persons with disabilities, as well as rights concerning everyday existence, such as education, health, housing and social assistance (heap, lorenzo & thomas 2009). heap et al. (2009:859) reported that much has been done in protecting the rights of persons with disabilities in terms of legislation and administrative measures, but the reality of the implementation of these rights is not yet experienced in the day-to-day experiences of south african people with disabilities. although the rights of persons with disabilities are strongly advocated in legislation, they remain disregarded in mainstream society as in south africa, in 2011, only 1.8% of the persons with a disability were employed (maja et al. 2011). wiggett-barnard (2013) also reports how persons with disabilities are under-represented in south african companies despite the various legislations and policies aimed to promote employment equality. thus, the equality of rights for persons with disabilities are still far removed from the reality as persons with disabilities perform far worse on several indicators of living conditions in both highand low-income countries, where they are often marginalised (loeb et al. 2008). the challenges associated with disability according to the world health organisation (who 2016), disability is a complex phenomenon referring to impairments, activity limitations and participation restrictions reflected in the interaction between the features of a person’s body and the features of that person’s environment. even though definitions aim to explain disability and the various types, it is important to recognise that disability represents a range of medical and social conditions and a heterogeneous population, and failing to understand this diversity leads to stereotypical views that can negatively influence attitudes towards persons with disabilities (wiggett-barnard 2013). negative attitudes towards persons with disabilities also contribute to negative and demeaning behaviour patterns such as acting in an aggressive or hostile way, talking to someone with a disability in a patronising way or staring at them (aiden & mccarthy 2014). as a marginalised group, the accessibility to basic services in south africa specifically also seems to be a problem to persons with disabilities (heap et al. 2009). numerous studies indicate that there are concerns regarding south african health care relating to ineffectiveness, barriers to care and unmet health needs because of an unequal and unsuccessful health system (goudge et al. 2009; ruff et al. 2011; xaba, peu & phiri 2012). persons with disabilities are therefore further constrained because of the fact that their needs are not met, thus making it difficult for them to effectively function as their non-disabled peers in society. studies indicate that persons with disabilities experience health inequalities caused by obstacles such as discriminatory attitudes that they face in accessing effective health care services (melville 2005:124). negative attitudes towards individuals with disabilities can therefore cause serious social and psychological problems without the health care professional even realising it. furthermore, negative attitudes towards persons with disabilities are so general that it might not always be noticed by people without disabilities – leaving persons with disabilities feeling marginalised by society because of barriers that inhibit their lives (johnson 2011). these negative attitudes can lead to feelings of loneliness, fear, isolation, the need for acceptance and various other psychosocial problems. the need for psychological help, because of mental health problems, is therefore just as great for persons with disabilities as for persons without disabilities. research shows that learning disabilities (silver 1981; taggart, cousins & milner 2007), hearing impairment (danermark 1998; fellinger et al. 2008; van eldik 2005), intellectual disabilities (alimovic 2013; carvill & marston 2002; gagliardi et al. 2011; taggart, taylor & mccrum-gardner 2010), spasticity (nicolson & anderson 2001) and visual impairment (eckerle et al. 2014; pinquart & pfeiffer 2014) are all related to the development of secondary emotional and behavioural problems. unfavourable life events amongst persons with disabilities also increase the risk of psychological problems (vereenooghe & langdon 2013:4086). in addition, children with developmental disabilities are more at risk for the development of emotional and behavioural problems compared to their peers without a disability (mazzucchelli & sanders 2011:2148). thus, psychologists can expect to provide psychological services to persons with disabilities with problems similar to those reported by persons without disabilities who seek help (leigh et al. 2004). empathy can be considered as an important construct in providing psychological services. empathy persons with disabilities value principles such as acceptance and empathy within the psychotherapeutic approach (johnson 2011). empathy refers to the capability of being affected by and to share in another’s emotional state, and assessing possible reasons for their state to identify with the person by adopting his or her point of view (burks & kobus 2012). leijssen (2004) also highlights the understanding of other as an essential element in helping relationships, and defines empathy as getting to know another, trying to understand them and their situation and reacting fittingly. according to eriksen and mcauliffe (2006:180), empathy is seen as one of the key characteristics of student counsellors to become effective counsellors. for a therapist working with a client with a disability, this means that the therapist should move beyond the negative attitudes and stereotypes found in society towards trying to truly empathise and understand the context of the person with a disability unfortunately, it seems as if empathy can deteriorate as clinicians gain experience in the health service (neumann et al. 2009). this negative relationship between empathy and experience was also seen in a study amongst psychology students at st. john’s university in the usa (camarano 2011). in a profession such as psychology, empathy is considered a crucial value in psychotherapy with persons with disabilities (johnson 2011). considering the negative correlation between experience and empathy, as well as the importance of empathy in therapy, this study will focus on empathy and the enhancement thereof in third year and senior psychology students as these students might work in health services or continue their studies to become possible counsellors or psychologists. prejudice one of the barriers often cited as contributing to health inequalities experienced by persons with disabilities concerns the personal attributes (e.g. discriminatory attitudes, and a lack of appropriate knowledge and skills) of health care professionals (melville 2005). although staff attitudes towards persons with disabilities who exhibit behavioural challenges may crucially and negatively impact a positive support culture, very little research has focused on how held prejudice and negative attitudes can be changed (hutchinson et al. 2014). persons with impairments are restricted because of stigmatisation, prejudice and isolation from services. it is therefore apparent that interventions should be developed with goals to change staff attitudes towards persons with disabilities. this can be achieved with the use of appropriate teaching techniques relevant to the learning environment. teaching and the role of serious gaming in addressing the educating of psychology students, it is important to consider the learning context. not only is it vital to integrate the needed knowledge and skills for working with persons with disabilities, but it is also important to address it in the appropriate learning environment. currently, students function in an environment dominated by technology (e.g. computers, tablets, smart phones and social media). serious gaming is one such modern teaching technique that has recently gained the attention of a wide variety of fields, where games can be used for professional teaching and not just for pure amusement (breuer & bente 2010). serious games can be defined as games (or game-like interactive systems) with an engaging, self-reinforcing context to motivate and educate the players (kankaanranta & neittaanmäki 2008). it can be of any genre, use any game technology and be developed for any platform. incorporating serious gaming into student teaching will stimulate learning. there are various applications of related, and sometimes overlapping, fields such as e-learning, edutainment games and game-based learning that fall within the field of digital gaming (susi, johannesso & backlund 2007). serious games, however, move away from the negative stigma associated with the term ‘educational games’, as they not only focus on the educational aspects, but also place equal emphasis on pedagogy, simulations and the game (ulicsak 2010). distinct from educational games, serious games have a broader potential than merely addressing aspects from a curriculum, and they can reach adult audiences as well (breuer & bente 2010). serious games therefore are used for purposes other than pure enjoyment by incorporating pedagogy and simulations into the game to reach a broader audience (ulicsak 2010). according to blumberg, blades and oates (2013), research frequently highlights the negative impact of computer games without recognising the many advantages. other than skills development and problem-solving abilities, one of the biggest advantages in the use of a serious game is the opportunity it gives students to experience situations that might be difficult or impossible to get in reality because of practical implications (susi et al. 2007). the benefits of serious gaming can therefore be used for the education of psychology students in order to address prejudice and empathy towards persons with disabilities by giving them the exposure to the para-social interaction, the illusion of face-to-face relationship, with persons with different disabilities, which have been found to have a positively effect on the attitude to minority groups (harwood 1999; schiappa, gregg & hewes 2005). the world of empa (sterkenburg 2012) is a serious game focused on the care of persons with disabilities. the player encounters a number of characters, namely a blind boy, a girl with multiple disabilities, a father, mother, baby and a boy with no disabilities. it is a computer game comprising six levels of principal educational situations, and questions are asked about the foremost educational and interaction problems encountered by the characters. multiple answers are given as possibilities and if players respond by choosing an option reflecting an empathic and sensitive attitude, they are rewarded with points and move on to the next level. if the players do not respond empathically and sensitively, they lose points and must try again to complete the level. throughout the game, players can see their score and if the game is finished, players receive feedback on their measure of sensitivity, empathy and responsiveness. the goal of the game is to discover the effect of sensitive and empathic reactions to situations (sterkenburg 2012). aims of the study this study aimed to investigate the level of south african third year and senior psychology students’ empathy and prejudice, as well as how it might be influenced with the use of the serious game by investigating the following four research questions: (1) what is the level of empathy amongst third year and senior psychology students towards persons with disabilities? (2) what is the level of prejudice amongst third year and senior psychology students towards persons with disabilities? (3) what is the effect of the world of empa on the third year and senior psychology students’ empathy towards persons with disabilities? (4) what is the effect of the world of empa on the third year and senior psychology students’ prejudice towards persons with disabilities? we expect that psychology students will have a higher level of empathy and lower level of prejudice than the general population. as these third year and senior psychology students study to possibly become therapists, and empathy is an important characteristic of a therapist, we expect that these participants will have higher empathy and less prejudice than the general population. furthermore, our hypothesis is that there will be a higher level of empathy after playing the serious game and that the students will have less prejudice after playing the game compared to the control groups. method research design this quantitative study consisted of a randomised controlled experiment with a pre-test, immediate post-test and follow-up design. the study consists of one experimental group and two control groups. the experimental group played the serious game the world of empa. the first control group read case studies with case studies and background information entitled ‘attachment’ (sterkenburg, janssen & schuengel 2010) with the same theoretical foundation as the serious game. the participants could not continue with the post-test without actually playing the game or reading the texts. the second control group received no intervention. all three groups were exposed to the pre-test and immediate post-test, as well as a follow-up post-test about a month later. both control groups received access to the game after the follow-up measure. participants and context the study was conducted at the north-west university’s faculty of health sciences, and specifically the subject groups psychology of the potchefstroom and vaal triangle campuses, south africa, in collaboration with the vrije universiteit amsterdam, the netherlands. once approval from the involved universities was gained, departmental heads and lecturers involved with the third year and senior classes of the psychology subject groups at the potchefstroom campus and the vaal triangle campus were identified as gatekeepers through whom prospective participants were contacted during a period of 2 months. senior psychology students were defined as being third year and honours students. non-probability sampling was used and participants were contacted through recruitment of volunteers in the relevant psychology classes on the potchefstroom campus and the vaal triangle campus of the university. it was important that participants were fluent in english because of the nature of the serious game and measuring instruments. initially, 100 senior students indicated interest in participation, but 17 potential participants withdrew because of transport problems, difficult academic schedules and semester tests. a total of 83 participants therefore participated in the study. using electronic systematic random sampling, the participants were randomly divided between the experimental and control groups via electronic systematic randomisation. in 22 cases, the follow-up measure was missing. these missing values were scattered over the three conditions. data collection and measuring instruments after providing informed consent, participants were required to complete a demographic questionnaire that included questions regarding age, gender, race and level of education. questions were asked to determine if the participant had a disability themselves or if they knew someone with a disability and the relation between them. these variables were examined and added as a confounder where necessary. data were collected using the following validated questionnaires as measuring instruments with both the experimental and control groups: the empathy quotient (eq) is a self-reporting, quantitative instrument consisting of 60 items where participants must indicate on a four-point scale whether they agree or disagree with a specific statement, such as: ‘i am quick to spot when someone in a group is feeling awkward or uncomfortable’ (billington, baron-cohen & wheelwright 2007). a total eq score of 32–52 indicates an average score, while 53–63 is above average and 64–80 indicates an understanding of how others feel and how to respond in a sensitive and empathic manner. the eq measures different aspects of empathy on a cognitive and affective level and it has a high test–retest reliability measured over a period of 12 months (r = 0.97, p ≤ 0.001) and a high internal consistency (α = 0.92). the eq was also shown to have concurrent validity (lawrence et al. 2004). the interpersonal reactivity index (iri) is a quantitative measurement consisting of 28 items, such as ‘before criticizing somebody, i try to imagine how i would feel if i were in their place’ (davis 1980). there are four sub-scales (perspective taking, fantasy, empathic concern and personal distress) to assess multiple cognitive and affective components of empathy. cognitive dimensions consist of perspective taking and fantasy, while affective dimensions include empathic concern and personal distress (hawk et al. 2013). this frequently used self-report instrument is based on a multidimensional conceptualisation of empathy and is designed to assess individual differences in empathic tendencies (de corte et al. 2007). the iri has demonstrated good intra-scale and test–retest reliability, and convergent validity is indicated by correlations with other established empathy scales (davis 1980). the implicit association test (iat) of greenwald, mcghee and schwartz (1998) seeks to measure implicit attitudes by measuring the underlying automatic evaluation, as it assesses the association between a target-concept discrimination (e.g. ‘handicapped’ and ‘no handicap’) and an attribute dimension (e.g. pleasant and unpleasant). it measures the implicit social preferences of participants using a categorical computer task where the strongest association between concepts is measured through reaction time (karpinski & steinman 2006). the iat shows reliability in measuring the implicit cognitions amongst adults with a reliability value of α > 0.75 (greenwald, nosek & banaji 2003). according to bluemke and friese (2008), flexibility, reliability and validity are acknowledged as valuable features of the iat. after completing the pre-test questionnaires, the mersenne twister pseudo-random number generator (prng) (matsumoto & nishimura 1998) automatically assigned the participant to one of the three conditions. as the process was automatically programmed, the researcher was blind to the condition of the participants. data analysis all data were analysed by the statistical consultation services of the university, potchefstroom campus, using a software program ‘statistical package for the social sciences’ standard version 22.0.1, 2014 (field 2009). to achieve research aims 1 and 2, descriptive statistics, frequencies, means and standard deviations were used to analyse the data. according to steyn et al. (1994), the mean is the best measure of locality to give an indication of the central tendency, while the standard deviation gives information concerning the distribution of the individual values around the mean. the d-scores were calculated for the iat according to the steps described by greenwald et al. (2003). a t-test was performed to define the effects of demographical variables. analysis of variance (anova) repeated measures were used with the three assessments (t0 and t1 and t2) as ‘time’ and ‘condition’ (empa vs. case studies) as between factor. the intervention effect was examined as the main effect of condition and the time × condition interaction effect. the use of this analysis also enables the handling of missing data where not all participants took part in all three measurements. ethical considerations the faculty of health sciences research ethics committee evaluated and approved the merits of this study and ethical approval (nwu-00125-11-a1) was granted. informed consent forms were completed by the participants, stipulating the details of the study and their voluntary participation in the project would not receive any form of compensation other than a certificate of participation, which was emailed to them. results the participants (n = 83) were randomly and electronically divided into the following three groups: an experimental group (n = 26), a control group that received a text to read (n = 26) and a control group that received no intervention (n = 31). table 1 provides an overview of the demographical information of participants, indicating that the majority of participants (78%) were female with the majority of participants ranging from the ages of 18–21 years (49%) and 22–25 years (39%). race was indicated by 60% of participants as caucasian, 31% africans and a mere 9% being of mixed race. no significant differences between the two groups were found for gender and age. table 1: overview of frequency distribution of participants’ demographic information (n = 83). for the purpose of this study, participants’ contact and experience with persons with disabilities or their own disabilities were also examined. only three of the participants had a disability themselves: two individuals reported having attention deficit hyperactivity disorder (adhd) and one as having a hearing impairment. the vast majority of participants (84%) had no experience working with persons with disabilities. exposure to persons with disabilities seemed limited with only 38% of participants having a family member with a disability or knowing any other person with a disability (45%). the extent of contact the 37 participants had with a non-related person with disabilities was noted as follows: noted as not applicable (n = 1), once or twice a year (n = 6), once or twice a month (n = 10), one to two times a week (n = 10) and a daily basis (n = 10). the sub-scales of the iri (fantasy, perspective taking, empathic concern and personal distress) were addressed separately during data analysis for the purpose of reliability. according to field (2009), the cronbach’s alpha should be applied separately to the sub-scales if the used questionnaire has sub-scales. the cronbach’s alpha estimates the reliability by determining the internal consistency of the test or the average correlation of items within the test (nunnally & bernstein 1994). table 2 gives an indication of the reliability of the measurements with overview of the cronbach’s alpha of the eq and sub-scales of empathy measured in the iri. although the general accepted cronbach’s alpha value of 0.8 is considered appropriate for cognitive tests, values below even 0.7 can realistically be expected in the measurement of psychological constructs because of the diversity of the constructs being measured (field 2009). table 2: reliability of scales and sub-scales as well as descriptive statistics measured before any intervention. as indicated in table 2, a strong sense of reliability and internal consistency (cronbach’s alpha = 0.82) was seen in the eq. all the sub-scales of the iri, however, showed a poor internal consistency with four items on the various sub-scales that had to be excluded in order to promote internal consistency. the items that negatively influenced the internal consistency of scales were removed before continuing further. the iat only gives one reaction time score and has no questions and sub-scales. determining the reliability was therefore not possible. table 2 also gives an indication of the level of empathy and prejudice as indicated by the means scored on the pre-test. slightly low to average empathy levels were noted on the eq (mean = 46.57), while the iri sub-scales (measured on five-point scales) indicated moderate levels of empathy (means > 3.00). participants’ level of prejudice showed strong negative associations with (strong negative associations towards) persons with disabilities (mean = −0.84) before any intervention. the demographics did not show significant associations with the data, except for gender. gender was the only demographical factor that showed significance influence on empathy scores as indicated in table 3. on the eq, women obtained a higher mean value of 49.25 comparing to the mean value of 39.88 of the men, resulting in a p-value of 0.01, and cohen’s d = 1.03. empathic concern was also higher in women (mean = 4.03) as compared to men (mean 3.39) (p = 0.01; d = 0.78). fantasy and prejudice were unaffected by gender differences. no statistical differences were found relating to ethnicity, age or experience of disability. table 3: results from t-test for gender comparisons on scores obtained before intervention. tables 4 and 5 provide an overview of the statistical and practical differences between groups, as well as over time. although tables 4 and 5 should be considered together, they are presented separately for clarity and ease of reading. when comparing the experimental group with the two control groups over time, all three groups were relatively comparable with average scores on empathy measured by the eq (table 4). three statistical differences interaction effects between the experimental and control groups were found. regarding the perspective taking sub-scale of the iri control group 1 (cl) showed a decrease from the first time (mean = 4.14) to the third measurement (mean = 3.84). this resulted in main effects of time × condition for perspective taking (f(102.8) = 3.07, p = 0.02). regarding empathic concern, the reading group (cl), showed an average decline of 4.11–4.01 over the three measurements. repeated measures anovas indicated a main effects of the time × condition interaction for empathic concern (f(105.8) = 3.63, p = 0.01). there was no main effect of the time × condition for the iri sub-scale fantasy (f(115.6) = 1.67, p = 0.16). although not statistically significant, the experimental group as well as the cl group did show a medium practical significant decrease (d = 0.49 and 0.43, respectively) in the fantasy sub-scale of the iri on the immediate post-test, while the control group receiving no intervention showed no significant changes over time (table 5). the control group required to read did, however, score practically higher than the other groups on the first measurement of all iri sub-scales but showed a medium practical significant decline on the follow-up measurement a month later (table 5). repeated measures anovas indicated that a main effect of the time × condition interaction for personal distress was significant (f(105.7) = 3.46, p = 0.01), as the average score in the reading control group (cl) increased but then decreased again. table 4: results of repeated measures analysis of variance with means between groups over time. table 5: cohen’s d effect sizes indicating practical significant changes within groups over time for means in table 4. all three groups also showed comparable levels of prejudice with strong negative associations regarding persons with disabilities on the pre-test (means in table 4). the negative value indicated a strong association between constructs of disability and unpleasantness. the closer the value is to 0, the less prejudice towards persons with disabilities. repeated measures anovas indicated no main effects of the time × condition interaction for iat (prejudice) (f(100.8) = 3.96, p = 0.43). however, a significant effect of time (f(100,8) = 5.0, p = 0.01) was found, indicating an increase from pre-test to post-test and a decrease to follow-up, because of the declines in the post-test found in both control groups. discussion empathy and acceptance play an important role in the therapeutic work with persons with disabilities who seek intervention for secondary psychological problems caused by the limitations experienced in their daily lives (johnson 2011). unfortunately, a negative correlation exists between therapists’ empathy and their gaining of experience (camarano 2011). attention is drawn to the possibility of influencing these components by using modern teaching techniques to gain experience and to increase the empathy to support the therapeutic work with persons with disabilities. the main objective of this study therefore was to examine the level of empathy and prejudice of third year and senior psychology students (as possible future therapists or health care workers) towards persons with disabilities and to study the use of a serious game to enhance empathy and reduce prejudice towards persons with disabilities by focusing on four underlying aims. the first research aim was to explore the level of empathy amongst third year and honours psychology students towards persons with disabilities. the results from the eq and sub-scales of iri depicted students as having average levels of empathy towards persons with disabilities. the findings indicated no significant differences from demographical factors such as ethnicity, race and age on their level of empathy towards persons with disabilities. it is, however, noted that female participants scored higher on eq (p = 0.01; d = 1.03), and empathetic concern (p = 0.01) with large effect (d = 0.78). regarding perspective taking, there was a medium effect (d = 0.54); the p-value shows a trend (p = 0.06). this conclusion resonates with findings in research indicating gender differences in empathy with females tending to be more empathic (baron-cohen & wheelwright 2004; davis 1980). gender was also noted to influence participants’ empathy sub-scales in the research conducted by collins et al. (2015). it is, however, concerning, and not consistent with our expectation, that psychology students (as possible future counsellors or psychologists) only show an average level of empathy as they are in their preparation of possibly working in a profession that places high regard on empathic interpersonal relationships. further research on the level of empathy found amongst psychology students might therefore be of value in the facilitation of empathy in students’ education curriculum to become psychologists. the second research question focused on level of prejudice amongst third year and honours psychology students towards persons with disabilities. according to banse, seise and zerbes (2001), the iat is a reliable, valid measurement of implicit attitudes, but reliability can be influenced by procedural variations. to prevent procedural variations influencing reliability, all groups were exposed to the same procedure in identical conditions throughout pre-test, post-test and the follow-up. results from the first measurement of the iat indicate a comparable level of strong prejudice amongst all three groups with means averaging around d-scores of about −0.85. the results echo the moderate to strong negative attitudes towards persons with a disability found across 13 international studies that employed the iat (wilson & scior 2014). the prejudice towards persons with disabilities can be because of the limited exposure the group, as full-time students, has with persons with disabilities. social psychology strongly supports allport’s contact hypothesis, claiming that one crucial means of reducing intergroup prejudice is through contact between groups (pettigrew & tropp 2006). this could possibly explain why the students with such low levels of exposure and experience in contact with persons with disabilities (table 1) have high levels of prejudice towards persons with disabilities. this resonates with previous studies finding contact to account for significant differences in iat scores (wilson & scior 2014). this result has significant implications for the consideration of practical exposure to minority groups such as persons with disabilities to address levels of prejudice in the curriculum of psychology students. thirdly, the study investigated whether the world of empa could affect the psychology students’ empathy towards persons with disabilities. significant main effects were found for perspective taking, empathetic concern and personal distress. however, changes seemed to occur in the control groups rather than in the experimental group (serious game). in fact, this may indicate that the serious game did prevent a decline in empathy. as this short intervention prevents decline in empathy, this result may support the importance of interactive learning compared to passive reading or no intervention at all. further research on the use of serious games to improve empathy is necessary. for example, research on the effect of a serious game that is longer than the 20 min, or which has more sessions of serious gaming over time. a small increase in the sub-scale of fantasy in the immediate post-test of the experimental group was noted. the fantasy scale measures the tendency to be caught up in fictional stories and to imagine oneself in the same situations as fictional characters, with the tendency to transpose oneself imaginatively into feelings and actions of the fictional characters (davis 1980). the increase in fantasy after exposure to the serious game proves the important dynamics of games, play and imagination to enhance learning in such online contexts (thomas & brown 2011). this also supports the effect of serious games challenging the imagination by creating a fantasy on extrinsic and intrinsic level to facilitate learning (gunter, kenny & vick 2006). it would appear that the imaginative contact that people with disabilities had through exposure to the game might have had a small positive effect on the enhancement of the students’ empathy towards disabilities, even if only on the short term. thus, possibilities to sustain this positive effect over time need to be investigated. it seems as if the reading of literature findings and case studies of persons with disabilities had a short-term effect on the emotional component of empathy. the four sub-scales of the iri measure both cognitive dimensions (fantasy and perspective taking) and emotional dimensions (empathic concern and personal distress) of empathy as multidimensional components (davis 1980). the reading of the text had a slight short-term decrease in the emotional dimension. this might indicate the factual text not appealing to the emotional dimension of the reader. none of these changes was, however, sustained over time. this temporary impact seems to support the notion that empathy as an embedded construct can be influenced in some degree but that it cannot be completely forced (davis 1990). hatcher et al. (1994) present research on the teachability of empathy using the iri and they, however, suggest that a developmental sequence exists for the four sub-scales of the iri and that future studies might need to sample larger populations in early adulthood, non-college and culturally diverse populations in order to gain clarity on this matter. further research on the possibility of empathy as a teachable construct is therefore needed on a larger scale over a longer period to gain clarity of the effect of intervention strategies with the aim of enhancing empathy. finally, our hypothesis was that the level of prejudice towards persons with disabilities would decline when third year and senior psychology students’ played the serious game the world of empa. no significant changes were noted within the experimental group regarding prejudice towards persons with disabilities. although crisp and turner (2009) provide empirical research indicating that even imaginary intergroup interactions can support the contact hypothesis to reduce prejudice, it seems as if the aimed imaginary exposure in simulated contact through the serious game did not have a significant effect. this might be because of the lack of frequency as the contact hypothesis implies that increased contact with out-groups can lead to a decline in prejudiced attitudes (beelmann & heinemann 2014). in the context of the current study, however, participants were just exposed to the simulated contact with persons with disabilities through the serious game on a single occasion, which might not have been enough to be significant. the possibility of increased frequency in simulated contact in order to reduce prejudice with a serious game might be considered in future studies. theoretical and practical implications the results of the current study not only hold implications for future research considerations, but also hold theoretical and practical repercussions. the average levels of empathy noted, and limited research on the level of empathy amongst psychology students, indicate the need for future research in order to promote the theoretical understanding of empathy and its facilitation in practice. small short-term effects seen in the results might support the notion that empathy is a dynamic component. theoretically, more research might be needed to determine the dynamics behind empathy in order to settle the debate in the literature about empathy as a teachable construct or not. the slight short-term effects noted on reducing prejudice confirm the theory of contact hypothesis that increased contact with persons with disabilities might be needed to challenge negative attitudes and that once-off simulations cannot be enough to change the deep-rooted stereotypical societal beliefs towards persons with disabilities. these findings also have practical implications for the teaching curriculum of psychology students as attention might be needed to address their exposure and frequency of contact with persons with disabilities. careful consideration should also be given throughout the curriculum to facilitate empathy as a dynamic component. this can be accomplished with possible use of reflection in supervision, increased interaction with persons with disabilities in practical exposure as well as experiential learning. limitations and future recommendations during the process of this study, certain challenges contributed to limitations of the study. because of the voluntary nature of the research, 22 participants did not return for the follow-up post-test, therefore creating incomplete data sets. however, the dropout was scattered over the experimental and control groups. to limit any technical problems, a technical assistant was present and supported the students at the start-up of the study. nevertheless, three students mentioned that they had difficulty concentrating and felt frustrated because of the electronic data collection in a big computer room and some technical computer difficulties. the initial intention was to have a bigger sample, but because of limited interest and participants withdrawing, it was not possible. furthermore, findings need to be interpreted in light of the possibility of type i errors. this places severe limitations on statistical justifications and the generalisation of the study. however, these findings are of great interest for psychology curriculum development for senior students at universities across south africa. for a follow-up study, it is recommended that a bigger scale study should be considered. the cronbach’s alpha scores of the sub-scales were 0.58, 0.59, 0.6 and 0.53. these scores are low coefficients, however, adequate given the low number of items for each sub-scale. the low number of items was because of the fact that almost half of the items had to be excluded. these items were excluded from the iri in order to promote internal consistency. they were reverse score items, which might indicate possible problems in participants’ interpretation of reverse score items. although the iri is regarded as one of the best measures of empathy developed, the iri may measure processes broader than empathy as seen in some items included in sub-scales of fantasy and personal distress (baron-cohen & wheelwright 2004). this might also have an impact on the reliability of the iri’s depiction of students’ empathy levels. the possibility of the questionnaires (poor internal consistency of the iri) and game developed in the european context having an impact on the results within the south african context cannot be excluded. it would be interesting to see if there are any differences between the study of the vrije universiteit, amsterdam (which developed the game and started with the same study in the netherlands) and results found within the south african context to investigate the possibility of cultural influences on empathy and prejudice. therefore, a comparative study between the current study and the results from the same study conducted in the netherlands might be recommended. with the negative correlation between experience and empathy as described in the literature, it can also be considered to investigate the possible interventions in enhancing empathy within an older population. the current study focused on third year and honours psychology students with limited work experience and exposure to the demands of practical care. focusing future studies on an older population with more experience can be considered to determine if intervention might be more effective once empathy has already started declining with the gaining of experience. conclusion the aim of this study was to investigate psychology students’ level of empathy and prejudice towards persons with disabilities. furthermore, the use of a serious game to influence empathy and prejudice towards persons with disabilities was examined. the results indicate that the ability to enhance empathy and reduce prejudice towards persons with disabilities might have a positive contribution to bridge the equality promoted in legislations to the experienced day-to-day reality of persons with disabilities. short-term effects with regard to the use of the serious game and informative text, in contrast with no changes in the control group, support the possibility of empathy being facilitated. however, future research efforts are needed in the consideration of establishing possible long-term changes in society, and particularly regarding the psychotherapeutic work with persons with disabilities within the south african context. acknowledgements the authors thank all the participants for their participation in the study. competing interests the intervention is freely accessible. the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.o. and p.s. contributed equally to this article. p.s. was responsible for the research design, all administrative aspects of the data collection and providing the data for the analysis. l.o. recruited the participants and conducted the study and the analysis. l.o. and p.s. contributed equally to the writing process of the manuscript. e.v.r. was the supervisor of this project and commented on the semi-final and final manuscripts. references aiden, h. & mccarthy, a., 2014, current attitudes towards disabled people, scope, pp. 1–20, viewed 28 october 2018, from http://www.scope.org.uk alimovic, s., 2013, ‘emotional and behavioural problems in children with visual impairment, intellectual and multiple disabilities’, journal of intellectual disability research 57(2), 153–160. https://doi.org/10.1111/j.1365-2788.2012.01562.x banse, r., seise, j. & zerbes, n., 2001, ‘implicit attitudes towards homosexuality: reliability, validity, and controllability of the iat’, zeitschrift für experimentelle psychologie 48, 145–160. https://doi.org/10.1026//0949-3946.48.2.145 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i., 2014, ‘perceptions of psychiatry disability amongst service users and caregivers’, african journal of disability 3(1), art. #146, 10 pages. http://dx.doi.org/10.4102/ ajod.v3i1.146 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. perceptions of psychosocial disability amongst psychiatric service users and caregivers in south africa in this original research... open access • abstract • introduction • objectives    • contribution to the field • research method and design    • setting    • procedure       • sampling strategy       • data collection       • analyses       • ethical considerations • results    • understanding of causes and symptoms       • subtheme 1: understanding of causes       • subtheme 2: experience of symptoms and behaviour    • perceptions on the course and treatment of illness       • subtheme 1: knowledge of diagnosis       • subtheme 2: experiences of pharmacological treatment       • subtheme 3: impact on emotional well-being       • subtheme 4: family conflict as an impact of the illness    • conceptualisation of and support for recovery       • subtheme 1: healthy relationships       • subtheme 2: importance of productive activity and work       • subtheme 5: support of traditional healers       • subtheme 6: significance of religion    • experiences of stigma and discrimination       • subtheme 1: experiences of health services       • subtheme 2: treatment by family       • subtheme 3: experiences in the social environment    • experiences associated with disability grants    • caregiver burden    • acceptability of facilitated group approach • discussion    • recommendations for psychosocial rehabilitation intervention       • psycho-education       • adherence support       • coping skills for family conflict and emotional well-being       • coping skills for stigma and discrimination       • income generation and productive activity       • addressing caregiver burden       • promoting acceptability • limitations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: in many parts of south africa there is little support for people with psychosocial disability caused by schizophrenia, beyond provision of psychotropic medications. appropriate community-based psychosocial rehabilitation interventions are a crucial element of mental health service development.objectives: this study aimed to use an explanatory model of illness framework to document experiences of illness, disability and recovery amongst service users with schizophrenia and their caregivers in a poorly resourced area in the north west province. data were used to provide recommendations for a contextually appropriate non-specialist facilitated group psychosocial rehabilitation intervention. method: eighteen in-depth individual interviews were conducted: nine with schizophrenia service users and nine with caregivers. interviews were conducted by two trained field researchers; both clinical psychologists fluent in the first language of participants. all interviews were recorded, translated and transcribed. data were thematically analysed using nvivo 9. results: participants linked the illness to witchcraft, poverty and stress. family conflict was recognised in the course of the illness, causing stress and challenges for emotional well-being. knowledge of diagnosis and biomedical treatment was minimal. key factors recognised by service users as promoting recovery were the ability to work, and the support of traditional healers and religious structures. conclusion: based on the findings of this study, a group psychosocial rehabilitation intervention emerged as a recommendation, with the incorporation of psycho-education, adherence support, coping skills, and opportunities for income generation and productive activity. the importance of also enlisting the support of religious leaders and traditional healers in supporting recovery is emphasised. introduction top ↑ schizophrenia can be a chronic, highly disabling mental illness. its associated disability can significantly undermine a person’s ability to function in their social environment. schizophrenia was given the highest disability rating of all disorders studied in the 2010 global burden of disease study (whiteford et al. 2013). in the absence of nationally representative epidemiological studies, annual schizophrenia prevalence has been estimated at 1% in one south african province (western cape) (kleintjes et al. 2006).psychosocial rehabilitation (psr) helps people with schizophrenia on the journey of recovery by helping them gain skills and access resources that improve their capacity to live fulfilling and productive lives (anthony & farkas 2009). in many parts of south africa there is, however, little support beyond provision of psychotropic medications, which are relatively widely available within primary health services (lund et al. 2010). there is a robust evidence base for psychosocial rehabilitation interventions promoting recovery in high income countries (hic) (e.g. intensive case management (dieterich et al. 2010), psycho-education (xia, merinder & belgamwar 2011), interventions with families (pharoah et al. 2010), life skills training (tungpunkom, maawan & soares-weiser 2012), cognitive behavioural therapy (jones et al. 2011), cognitive rehabilitation (mcgrath & hayes robyn, 2000). growing evidence in low and middle-income countries (lmic) indicates effectiveness of local adaptations of some of these interventions (e.g. balaji et al., 2012; chatterjee et al. 2011; gutierrez-maldonado, caqueo-urizar & ferrer-garcia 2009; malakouti et al. 2009; ran et al. 2003). evidence for group-based psychosocial approaches, which may be more feasible than interventions delivered to individuals, is also growing in lmic, for example group-based psycho-education in china (weidong & guoquan 2010; zhang et al. 1998) and the czech republic (motlova et al. 2004); group-based social cognition training in turkey (tas et al. 2012); group-based cognitive rehabilitation in malaysia (alwi, delisi & nasrallah 2010) and iran (ali beigi et al. 2011) and group-based family intervention in brazil (cabral & chaves 2010). in south africa, recent studies have shown the potential for assertive community treatment (nurseor social worker-led) (botha et al. 2010; botha et al. 2014) and group-based family therapy (nurse-led) (asmal et al. 2013). insufficient resource allocation for psychosocial community-based services for recovery is well recognised in south africa (coetzee & kemp 1982; lund et al. 2010; petersen & lund 2011). given the paucity of specialist mental health human resources (0.4 psychologists per 100 000 population; 0.1 social workers and occupational therapists per 100 000 population in the north west province (the site of this study) (lund et al. 2010), adopting a task sharing approach is indicated in line with global recommendations (mari et al. 2009), the recent world health organization mental health action plan (who 2013) and south africa’s national mental health policy framework and strategic plan (2013–2020) (department of health 2013). objectives top ↑ the bio-psychosocial model of disability underlines the effects of mental illness on multiple linked ‘domains’ of an individual’s life (body, mind, and social interaction/participation) (king, lloyd & meehan 2007). the starting point for intervention is therefore an understanding of the lived experience of schizophrenia and psychosocial disability. this study aimed to document experiences and perceptions of illness, disability and recovery amongst service users with schizophrenia and caregivers, with the aim of informing a contextually appropriate community-based psychosocial intervention that could be facilitated by non-specialists within a resource-constrained setting. contribution to the field understanding explanatory models of illness held by psychiatric service users with schizophrenia attending primary health care clinics for symptom management is important to inform the development of a socio-culturally acceptable psychosocial rehabilitation intervention at this level of care that can aid recovery within similar scarce resource contexts in south africa. research method and design top ↑ setting this study is part of the programme for improving mental health care (prime), a research consortium aiming to generate evidence for the implementation of programmes for priority mental disorders in low-resource settings (lund et al. 2012). in south africa, prime is a collaboration between mental health researchers and the south african department of health (doh) in dr kenneth kaunda district in the north west province. procedure sampling strategy service users were recruited using a convenience sampling approach: (1) through clinic registers from two primary care clinics (5 service users, 5 caregivers), and (2) through the north west mental health society (4 service users, 4 caregivers). the north west mental health society is affiliated to the south african mental health federation (samhf) – a non-governmental organisation (ngo) providing mental health services and administering disability grants. criteria for inclusion in the study were a confirmed diagnosis of schizophrenia or being a caregiver of a person with a schizophrenia diagnosis, and being over the age of 18. service users interviewed were people whose symptoms were well managed and who accessed repeat medication from the clinics. the two interviewers were clinical psychologists who used their clinical judgement to establish whether participants were able to give informed consent and participate in the interview. similarly, clinical judgement was used to assess the suitability of caregivers, and through this process one caregiver was referred to a psychologist for treatment of her depression. data collection eighteen semi-structured individual qualitative interviews were conducted, nine with service users and nine with their respective caregivers. the interview schedules were based on kleinman’s concept of explanatory models of illness (emi) (kleinman 1980), and covered understanding of causes, experiences of symptoms, course (including experiences of stigma and discrimination), treatment (including interaction with service providers and experiences with disability grants), and healing or recovery. the interview schedules also included questions on the acceptability of a facilitated group approach. interview schedules were reviewed and simplified to take into consideration possible lower levels of functioning of interview participants. interviews were conducted by two clinical psychologists, both first-language setswana speakers and fluent english speakers. one of the interviewers was also training to become a traditional healer, giving her a relevant perspective on issues relating to mental health in the community in question. the interviewers contributed to the development of the interview schedule to ensure consideration of cultural nuances. interviews were conducted in service users’ first language (mainly setswana, one english interview). all interviews were recorded, and then translated where necessary into english and transcribed. analyses nvivo9 qualitative data analysis software was used to store data and conduct analysis. all interviews were coded by the first author. framework analysis (ritchie 1994) was used involving the following steps: firstly, the transcripts were read and re-read to familiarise and immerse the researcher in the data. secondly, a thematic framework corresponding to the interview schedules was generated for sorting data. thirdly, the transcripts were coded, using the thematic framework developed, with additional themes being added as consecutive transcripts were analysed and new themes emerged. further review and recoding of transcripts was carried out until no additional themes or subthemes emerged. ethical considerations permission was granted for this study from the university of kwazulu-natal and the university of cape town as part of the prime ethical approval (ukzn hss/0623/012d; uct hrec 412/2011). approval for prime research was obtained from the provincial department of health. potential participants were informed that there was no direct benefit to them of participating in the interview, other than the small grocery store voucher (r30) incentive. participants were advised of the voluntary nature of their participation and of their right to withdraw from the study at any point. all participants provided written informed consent and permission to report findings, following an explanation of the research in their first language. the interviews were conducted in a private room and all personal identifying information was removed from the data. hard copies of interview transcripts were stored in a locked office, and soft copies were stored on password locked computers. results top ↑ demographic characteristics of service users are given in table 1. demographic information on caregivers was not collected; however, all caregivers were female family members. table 1: demographic characteristics of service users interviewed. seven main themes emerged from the data. understanding of causes and symptoms subtheme 1: understanding of causes participants commonly had more than one understanding of the cause of their illness and impairments. witchcraft was most commonly believed to be the cause: ‘a person might get naked and walk around the streets undressed due to her mental state that has changed after being bewitched’ (service user participant 5).one service user made the link between their illness and the stress caused by living in extreme poverty: ‘people should have money and should be given jobs because if you do not have money, you become stress[ed]. this stress exacerbates your illness. when you have money you don’t become mentally ill.’ (service user participant 2) two service users identified conflict in their family as a cause of their illness. three others attributed their illness to an experience of violence; a traumatic brain injury in childhood and smoking cannabis. three caregivers attributed the illness to witchcraft, with one explaining that it could be due to a ‘calling’ to become a traditional healer. other caregivers had different explanations – one linked the illness to their family member’s experience of being in prison, two believed that it was a result of pregnancy, and two attributed the worsening of the illness to the seasons. subtheme 2: experience of symptoms and behaviour when talking about their experience of the illness, service users focused on the physical impact and caregivers focused on behavioural aspects. service users reported the disturbing nature of hallucinations, predominantly auditory and visual: ‘... i saw witches doing their private things. they were jumping over flames of fire. i saw them frying meat and jumping over the fire.’ (service user participant 8) they also reported unpleasant physical symptoms (some of which could be medication side effects), including feeling ‘heavy and confused’, dizziness, ‘feeling strained at the back of my head’, feeling a lack of control over their body, lack of concentration, difficulty sleeping, and disturbing dreams. one service user described how her inability to concentrate affected her ability to function: ‘i take a piece of paper [list of things to buy] each time i go to the shops. even though i always have a piece of paper with me, i always wonder what to buy ... and i feel so dizzy.’ (service user participant 8) the majority of caregivers related their experience of the illness to their relative’s disorganised, violent or destructive behaviour (e.g. burning property, beating children, walking the streets aimlessly, refusing to bath): ‘we get scared and sometimes when she fights she can really hurt someone because she [is] very strong.’ (caregiver participant 14) perceptions on the course and treatment of illness subtheme 1: knowledge of diagnosis knowledge of diagnosis was low amongst service users and caregivers. none were able to give the diagnosis that the service user had received in their clinic records. three service users believed that their illness could be cured completely and one did not believe that he was ill. two service users and three caregivers specifically mentioned that when they went to health services they were given medication, but that the illness was not explained to them:‘they haven’t told me what kind [of illness] it is. she [service provider] says there are different mental illnesses, but they haven’t told me which type he has.’ (caregiver participant 12) subtheme 2: experiences of pharmacological treatment overall knowledge on medication and side effects was low. none of the service users talked about their medication by name. the majority (eight) service users reported good medication adherence and an appreciation of its benefits. however, five also noted challenges to adherence, including being unable to get to the clinic to collect medication, forgetting an appointment, or forgetting to take medication due to symptoms. five service users said that a family member helped them to be adherent. this is in line with caregiver reports that they helped ensure that the service user they cared for took their medication. by contrast, several caregivers described verbal and physical fighting over medication:‘he tells me to take them [pills] myself and see what they do to me’. (caregiver participant 17) three service users expressed frustration linked to the different medications prescribed: ‘they never give me the right medication, one day they give me these pills and the next time i come they give me different ones. when they give me different medication, i have headaches and pain in my body’. (service user participant 7) subtheme 3: impact on emotional well-being service users and caregivers described how the illness had a significant negative impact on their emotional well-being. two service users (both female) described how their illness caused them high levels of anxiety.‘sometimes i feel like i’m running without knowing where i’m running to, as if something was chasing me.’ (service user participant 8) three service users mentioned having a short temper and one described his frustration at his inability to do things independently. ‘i feel i’m inconveniencing the person who helps me if i’m unable to complete a certain task ... i’m supposed to complete it on my own’. (service user participant 5) other emotional difficulties service users described included the loneliness of stays in hospital, and social isolation felt in everyday life. caregivers described feelings of hurt and sadness caused by the service user’s behaviour towards them (three caregivers), fears of the service user’s violent or aggressive behaviour (three caregivers), embarrassment at their behaviour (e.g. lack of hygiene, two caregivers) and fears for their safety (e.g. when walking on the road, three caregivers). six caregivers expressed a sense of loss in terms of how their lives could have been, had their family member not had this illness: ‘she [service user] could have been very successful, she used to love singing gospel and that’s all that she ever wanted to do. i could also have been successful.’ (caregiver participant 14) subtheme 4: family conflict as an impact of the illness family conflict was described by both service users and caregivers. two service users (both female) felt the illness had a negative impact on their intimate relationships. two service users said their family believed that they acted deliberately to cause difficulty for the family. one service user then noted how this lack of understanding caused a worsening of his symptoms:‘they [family members] say “you behave as if you are crazy and you are not.” when they say that, the voices attack me and become louder.’ (service user participant 2) one caregiver noted how the illness had caused ‘chaos’ for the whole family, and particularly had hurt the children of the service user: ‘yes, we are always stressed … at night and in the morning you will find that we discipline him for all his mistakes. then during the day ... we shout at him.’ (caregiver participant 17) conceptualisation of and support for recovery when talking about recovery and their ideas of a positive future, responses on recovery concepts identified from international literature (e.g. meaning and purpose) were limited. several service users focused on meeting basic needs (e.g. food, clothing), indicative of the challenging conditions in which they live. subtheme 1: healthy relationships three service users expressed their need to have positive relationships with those around them, including family members and service providers:‘i need to stop shouting at them [nurses, doctors, social workers] and start to be polite with them. and with my family so that there are not conflicts.’ (service user participant 2) subtheme 2: importance of productive activity and work the majority of service users highlighted the importance of productive activity in their lives, including household chores and gardening:‘when i’m feeling better, i’m able to do things for myself such as washing dishes and clothes. but when i’m unwell i can’t do anything so my children help me.’ (service user participant 7) seven service users highlighted the importance of work in their perception of a positive future: interviewer: ‘when do you feel like your life has meaning and purpose?’ respondent: ‘when i feel like what i was supposed to do for the day is completed ... just like the job i used to do ... i was doing it with all my heart.’ (service user participant 2) two service users noted that it was their lack of skills and education that was a challenge to finding employment. three service users said their illness prevented them from working, noting the effect of symptoms and impairment in preventing them from performing work-related tasks. four caregivers believed the service user they cared for was unable to work due to being unable to do physically intense work, being aggressive, feeling tired, or due to their destructive behaviour and the unwillingness of employers to hire those with mental illness: ‘she burns people’s things, no, she can’t work. others have hired her before, thinking that she was normal, but as time goes on they see that she is not well.’ (caregiver participant 16) subtheme 5: support of traditional healers five service users said they had or would consult a traditional healer, either of their own accord, or at the direction of family. three service users believed that the traditional healer had helped them understand or improve their symptoms. two service users felt that they had not been effective, and three caregivers emphasised that they did not view traditional healers as effective:‘modern doctors don’t understand muti [traditional medicine] that people give you in your food. i think a traditional healer would help me understand the causes of this illness better.’ (service user participant 7) three service users and one caregiver indicated that they thought both western and traditional approaches could aid in their recovery: ‘his [traditional healer] name is mr. peter, he helped and the pills helped me too. when i left witrand [psychiatric hospital] i was feeling much better and i went to the traditional healer who helped me to recover fully.’ (service user participant 6) subtheme 6: significance of religion service users and caregivers indicated that organised (christian) religion and faith in god was key to coping with their disability and life circumstances. several participants indicated that instead of worrying they put themselves ‘in the hands of god’:‘i still see the man who attacked me ... but i’ve never opened a case against him, i just give everything to god.’ (service user participant 8) caregivers gained comfort from their belief that god would protect the person they care for, and give them strength to fulfil their caring role: ‘each time the illness starts he just leave[s] the house and we do not know where he’s staying. god is the one who will protect him.’ (caregiver participant 10) experiences of stigma and discrimination subtheme 1: experiences of health services three service users described good treatment at hospitals and clinics. conversely, three service users described being treated badly by nurses. one service user described an experience of stigma related to his receiving a disability grant:‘they [nurses] said ... when we buy clothes we spend their money because it comes from their taxes. they said i should give them money because i get a grant and i’m arrogant.’ (service user participant 3) subtheme 2: treatment by family only one service user reported being treated with dignity and respect by family members. seven service users reported various forms of ill treatment by family members, including verbal abuse, being refused food, being ignored when in need of help, and being prevented from leaving the home. two caregivers provided evidence of verbal and physical abuse by other family members:‘there was a time when i went to my uncle to ask for help and he just shut the door in my face. i had been attacked with a knife, i only wanted help.’ (service user participant 8) subtheme 3: experiences in the social environment one service user said he was generally well treated and respected in his community, and four caregivers also described good treatment by neighbours. however four service users described various forms of ill treatment including being called ‘crazy’ or ‘lunatic’, being accused of committing crimes, being refused help or financial loans, being refused service at shops, and being ridiculed.‘they just accuse me of things that i don’t know about. they say that i kill people and they want to [take] revenge ... they even call me a rapist.’ (service user participant 5) community members also took advantage of service users’ impairments. this included engaging the service user in work and not paying them, short-changing them at shops and sending them on unpaid errands. two caregivers believed their female family members had been sexually abused. experiences associated with disability grants all service users interviewed were receiving disability grants from the south african social security agency (sassa) on the basis of their psychosocial disability. two caregivers said that the grant was extremely helpful to their families, enabling them to eat even though no one was working. grants were not always effectively managed, with three caregivers having to use grant money to pay off debts that the service user had incurred through buying meat, clothing or alcohol. four service users reported managing the money from their grant themselves, and four said their caregiver managed the money. three of these reported that their caregivers took advantage by spending money on themselves or withholding money. conversely, one caregiver felt misunderstood due to being accused of mismanagement of the grant:‘she says that the community is saying that i spend her money on my own things ... and that hurts me because i know that i’m not misusing her money.’ (caregiver participant 16) despite this regular income, one service user articulated his desire to work and how the fear of losing his grant discouraged this. ‘i wish i could go back to the shop and start working again. but they said that if i continue working then i won’t get my pension money.’ (service user participant 5) caregiver burden significant burden emerged as a defining characteristic of the experience of caregivers. several articulated a strong sense of responsibility to their family member with schizophrenia, exacerbated by the lack of involvement of other family members:‘whenever she [gets] ill, everyone in the house backs off and the responsibility is left to me.’ (caregiver participant 14) one caregiver had suicidal thoughts related to her inability to cope with life as a caregiver. acceptability of facilitated group approach four service users said they would be happy with a group facilitated by non-specialists. two of these service users however highlighted the importance of these non-specialists being trained in the specifics of their mental illness. one service user said he would not join because he went to the hospital regularly and would get advice from the doctor. he did acknowledge that a reason for him to join would be to share his knowledge and experience with others. one other service user said they would not join without giving a reason. the remaining three service users did not respond to this question, seemingly due to lack of understanding of the facilitated group format. seven caregivers said they would join groups; however, one said she did not have the time and one said the family member she cared for would not be able to participate due to difficulty with communicating.motivations for service users joining a group included doing something ‘on the side’ to increase income, learning new skills, sharing experiences with people in a similar situation, keeping busy, avoiding substance abuse, being reminded to take medication, and having positive social interactions: ‘i would go to talk about my problems so that we can help each other.’ (service user participant 8) caregivers’ motivations included gaining support and comforting one another, giving and gaining advice on how to cope with their caring role, sharing experiences and motivating each other, finding a release for their stress and emotions, and building friendships: ‘if you talked to them [people in the group] about living with a mentally challenged patient, then they could empathise with you. they would also share how they handled similar situations.’ (caregiver participant 17) discussion top ↑ participants in this study held little knowledge on biomedical aspects of the illness (symptoms, treatment) in line with previous research in the north west province, which indicated low levels of knowledge of schizophrenia amongst service providers (modiba et al. 2001). traditional beliefs on causation were also common, in line with previous studies showing that attitudes, beliefs and experiences relating to schizophrenia are substantially different in south africa from western conceptualisations (mbanga et al. 2002; mosotho, louw & calitz 2011). service users’ conceptualisation of their recovery from the illness was characterised by high value placed on engagement in productive activities and the ability to work as reported previously in south africa by service users and user advocates (kleintjes, lund & swartz 2012; van niekerk 2009;). linked to the importance of work, the fact that some service users described their inability to meet their basic needs for survival (e.g. food) indicates the pressing unmet need for a broad spectrum of supportive services. despite the support net provided by disability grants, evidence from this study of the hardships for service users and their families caused by living in poverty, similar to those documented for service users with schizophrenia in other parts of south africa (swartz et al. 2006), reaffirms the crucial need for psychosocial rehabilitation interventions to promote recovery and reintegration of service users into their community and into productive activity, including employment (coetzee & kemp, 1982; lund et al. 2010; petersen & lund 2011). support from traditional healers was important for recovery, in line with the south african context in which traditional healers provide significant psychosocial support for other conditions (campbell-hall et al. 2010). religion or spirituality has been suggested to provide problem-solving strategies, a source of social support, the derivation of meaning, and improved self-worth for those with severe mental illness (shah et al. 2011), and the reporting of the significance of religion for recovery and coping by service users and caregivers suggests this is the case in this context.the study confirmed significant social disability, social isolation and stigma and discrimination experienced by service users reflective of the south african context in which schizophrenia is stigmatised significantly more than other mental disorders (sorsdahl & stein 2010). caregivers in this study also shouldered a heavy burden, and both service users and caregivers were negatively affected by family conflict and lack of coping skills for dealing with the impact of the illness on their emotional well-being and the functioning of their families. recommendations for psychosocial rehabilitation intervention data from this study provide direction regarding the design of a facilitated group psychosocial rehabilitation intervention as detailed in table 2. table 2: recommended elements of a contextually appropriate group psychosocial intervention for service users with schizophrenia and caregivers in the north west province, south africa. psycho-education low levels of awareness amongst service users and caregivers of the diagnostic condition (even though awareness of the presence of a mental illness was common) highlight a need for the provision of clear and accurate information. lack of knowledge limits service users’ ability to participate in their care (kleintjes, lund & swartz 2013a), a key aspect of recovery. the south african primary health care system is currently piloting a system that emphasises integrated chronic disease management, based on the chronic care model (ccm) (wagner et al., 2005) this emphasises, inter alia, the need for informed and motivated service users who are able to take charge of managing their condition (battersby et al. 2010 – table 2b). thus, the proposed facilitated group intervention is timely and aligns with the development of the south african health system. adherence support low levels of knowledge on medication caused confusion for service users and difficulties with adherence. similarly, service users had low levels of knowledge of medication side effects and some perceived possible side effects as symptoms of their illness (e.g. cognitive difficulties). medication literacy for service users (and caregivers who have a key role in promoting adherence) is a clear need. in the south african context, non-adherence may also be linked to services users’ emi (bhagwanjee et al. 2008) and lack of understanding of these on the part of service providers grounded in biomedical approaches. to effectively support adherence, facilitators of the proposed group intervention will need to encourage health-promoting behaviours (e.g. adherence, knowing when to get help) alongside a traditional explanatory framework (table 2; section a, h). this aligns with earlier work in south africa indicating that service users with mental illness maintain traditional beliefs on the causation of their illness, whilst still seeking and valuing biomedical treatment for alleviating symptoms (lund 1998). the current study also reinforces the need to move beyond the stereotype of the direct conflict between ‘traditional african’ and ‘modern western’ understandings of mental illness and recovery (lund 1998). coping skills for family conflict and emotional well-being although some schizophrenia service users in south africa see themselves as being valued and respected by caregivers despite the lack of community-based supportive services (manamela et al. 2003), in this study family conflict was evident as a source of stress for service users and caregivers. their contrasting responses in some areas of this study suggest potential reasons for conflict, for example caregivers reported fighting over medication, whereas service users reported significant caregiver support for adherence; service users expressed a desire to be productive, whereas caregivers believed they were unable to do this. clearly the experience of illness for service users and caregivers is exacerbated by living in poverty, and similar to findings of a recent study of family therapy for schizophrenia in south africa (asmal et al. 2013), the proposed intervention will benefit from adaptation of conflict management strategies to specifically address poverty and its associated challenges.stress and anxiety were important challenges to the emotional well-being of service users and caregivers in this study, and these too may be related to the presence of conflict in the family. beyond psycho-education on schizophrenia, there is a need for increasing mental health literacy on other mental health problems, and building resilience and coping through sharing skills and practical strategies for managing stress and anxiety (table 2; section d, k). coping skills for stigma and discrimination data from the current study indicate that stigma and discrimination constitute a significant barrier to social integration of service users. internalised stigma associated with this illness may further compound the burden of psychosocial disability. this aligns with earlier work in the north west province showing schizophrenia service users to have particular needs in the areas of improving social networks and community integration (modiba et al. 2001). increasing knowledge and empathy amongst caregivers (table 2; section i) may work towards reducing stigma and discrimination. it is equally important to equip service users with coping strategies for dealing positively with experiences of external stigma and discrimination (unlikely to change in the short-term – table 2; section e), as well as internalised/self-stigma. finding effective ways for increasing awareness and understanding of mental illness in the wider community are clearly crucial but beyond the specific scope of the proposed intervention. however, there has been a call for greater prominence of service users in awareness raising and other advocacy initiatives in south africa (kleintjes et al. 2006), and facilitated groups may be an effective way to help mobilise service users towards advocacy and the development of policy and services in which they currently have little participation (kleintjes et al. 2010). income generation and productive activity although disability grants provide a safety net from absolute poverty for service users and their families, data from this study also indicate they can be a source of conflict. improving money management and communication skills is indicated (table 2; section d). many service users in this study emphasised that social integration in the form of working and earning an income would be the cornerstone of recovery. in the wider context of poverty, unemployment, and multiple dependents on disability grants, a significant motivator for participation in groups may be opportunities for income generation to add to income derived from grants (table 2; section f), as has been the case in user-led groups in other african countries which have incorporated strategies for sustainable livelihoods such as group savings schemes and income-generating cooperatives (kleintjes, lund & swartz 2013b). data from this study also indicate the importance of productive activity in the household other than work and income generation. improving service users’ contribution to household tasks may help to boost self-esteem, with the additional benefit of helping to reduce burden on caregivers (table 2; section f). addressing caregiver burden the frequency of reporting in this study of significant caregiver burden suggests a need for a separate intervention to support family/caregivers. families who are best equipped to care for a person with schizophrenia are educated on the illness and engaged in seeking help (rose 1996). access to information on the supportive resources available in the community acts as a buffer to the burden of care (caqueo-urizar & gutierrez-maldonado 2006). the proposed intervention should therefore incorporate these aspects, as well as enabling caregivers themselves to share their own coping strategies with each other (table 2; section k). in this study, all caregivers interviewed were female, corresponding to the global picture of caregiving (esplen 2009). low levels of perceived support from other family members have been associated with higher caregiver burden (biegel et al. 1994) and for countries such as south africa, where the social welfare system (e.g. sheltered living) is inadequate, it may be beneficial to focus on ways of strengthening extended family relations (ohaeri 2001) and increasing the role of men in caregiving (table 2; section k). promoting acceptability the facilitated group approach seems to be acceptable to service users and caregivers in this study – only two people said they would not join if accessible groups were set up. there was an expressed need for group facilitators to have specific training on schizophrenia and a particular sensitivity to the impacts psychosocial disability has on service users’ lives. this highlights the need for specifically designed training for group facilitators. this training should also incorporate orientation towards the acceptance of service users’ emi. in this study, service users and caregivers linked their experiences of illness or disability to stress and poverty, and empathy for this reality will be key to promoting acceptance. religion as a coping strategy was commonly reported in this study. making provision for understanding and supporting religion and spirituality (ali beigi et al. 2011) rather than assuming this is a result of psychopathology (reiland & lauterbach 2008) may further increase the acceptability of the proposed intervention (see table 2; section a). both caregivers and service users in this study indicated that mutual support and sharing experiences would be an important motivator for participating in groups. this grounding in peer support as a facilitator of recovery has been the basis of user-led organisations that have developed elsewhere in africa (kleintjes et al. 2013b). while a user-led group approach is likely to be the most acceptable form of intervention, service users in this study were disempowered by their lack of knowledge on their illness, lack of education, and their lack of access to basic services. a facilitated group approach may be a positive first step in moving towards service users’ self-organisation and advocacy. the groups would also benefit from linking with the south african mental health advocacy movement to develop over time in line with this model of peer-led groups. limitations top ↑ this study was limited in having a relatively small sample (comprised of two subgroups, with differing views and experiences) and in following a convenience sampling strategy. this may have introduced homogeneity in the life circumstances and experiences of participants. a response bias may also have been introduced due to the setting of interviews in a health facility. the study was limited by difficulties in gaining responses to all interview questions due to the level of functioning of some service users. the clinical training of the interviewers and their understanding of the symptomatology of schizophrenia was a strategy employed to ensure the best data possible were gained. however, this could also have introduced a limitation in terms of reducing their perspective and sensitivity to salient cultural issues relevant to participants understanding of mental illness and recovery. similarly, the one interviewer’s position as a traditional healer may also have introduced a bias towards this perspective. both interviewers received specific training on the interview schedule aiming to reduce these possible sources of bias. other limitations include the potential for researcher biases in this type of qualitative research analysis. conclusion top ↑ this study has highlighted the multiple challenges faced by service users with schizophrenia and their caregivers in south africa, encompassing not only the experience of disability, but also the impact of high levels of poverty. the study has identified potential elements of a contextually and culturally appropriate group psychosocial intervention, linked to the perceptions and experiences of service users with schizophrenia and their caregivers in the dr kenneth kaunda district, north west province. acknowledgements top ↑ the authors thank one selohilwe and letta mosue for conducting fieldwork, and tasneem kathree for coordination of the project. competing interests the authors report that they have no conflict of interest. authors’ contributions c.b-s. 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j., merinder l.b. & belgamwar m.r., 2011, ‘psychoeducation for schizophrenia’, cochrane database of systematic reviews , viewed n.d., from http://onlinelibrary.wiley.com/doi/10.1002/14651858.cd002831.pub2/abstract zhang, m., he, y., gittelman, m., wong, z. & yan, h., 1998, ‘group psychoeducation of relatives of schizophrenic patients: two-year experiences’, psychiatry & clinical neurosciences 51 (suppl. 6), s344–347. http://dx.doi.org/10.1111/j.1440-1819.1998.tb03264.x abstract disability inclusive communities disability inclusivity in developing country settings the zimbabwe situation psychological well-being with disability goal of the study method findings and discussion conclusion acknowledgements references about the author(s) jabulani mpofu department of disability studies and special needs education, zimbabwe open university, zimbabwe maximus m. sefotho department of educational psychology, university of pretoria, south africa jacobus g. maree department of educational psychology, university of pretoria, south africa citation mpofu, j., sefotho, m.m. & maree, j.g., 2017, ‘psychological well-being of adolescents with physical disabilities in zimbabwean inclusive community settings: an exploratory study’, african journal of disability 6(0), a325. https://doi.org/10.4102/ajod.v6i0.325 original research psychological well-being of adolescents with physical disabilities in zimbabwean inclusive community settings: an exploratory study jabulani mpofu, maximus m. sefotho, jacobus g. maree received: 13 oct. 2016; accepted: 08 aug. 2017; published: 26 oct. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the purpose of this study was to explore the psychological well-being of adolescents with physical disabilities living in inclusive community settings of makonde urban in zimbabwe. an inclusive community is one that aims to remove exclusionary practices within the community and promote community systems that accept all people irrespective of their difference. inclusive communities on their own are not uniquely designed for people with disabilities, but most developing countries have adopted them as a basic strategy to influence and enhance psychological well-being of people with disabilities. methods: a constructivist lived experience perspective underpinned this research, in which multiple case studies were used to interact with the participants on inclusion and psychological well-being of adolescents with physical disabilities. purposive sampling was used to select 14 participants (9 males and 5 females). data were collected through face-to-face interviews and transcribed verbatim. four themes emerged from the thematic analysis of data sources. results: it was found that participants who were adolescents with physical disabilities living in inclusive community settings of makonde urban in zimbabwe were having high levels of autonomy and choice, purpose in life, positive relations with others and good personal growth and self-acceptance. conclusion: the findings of this study should enable inclusive communities’ policy-makers and researchers to better understand the psychological well-being of adolescents with physical disabilities living in inclusive communities. disability inclusive communities disability inclusive communities are those communities that facilitate the inclusion of people with and without disabilities, rather than expecting individuals to fit into the existing arrangements (chakuchichi & mutamiswa 2003; who 2004). inclusive communities are not about the vulnerable members of the community, but they constitute a framework through which all community development can take place (ainscow 2003). inclusive communities recognise that all community members, not only those who are vulnerable to marginalisation, require communities that are responsive to all aspects of community diversity (ainscow 2003). the core value of an inclusive community is acknowledging that people are different and that diversity should be valued (chakuchichi, chimedza & chinze 2003; engelbrecht & green 2007). an inclusive community engages in both sustained and sustainable strategies that are designed to address the needs of its diverse people, including those with disabilities. disability inclusivity in developing country settings the general quality of life for people with disabilities in developing countries has shown some improvement over the last decade. this has been largely because of the involvement of these individuals with disabilities in various inclusive community strategies (choruma 2006). the adoption of inclusive community practices by many developing countries has directly influenced the movement of most adolescents with physical disabilities from disability group homes to living in more inclusive communities (majoko 2005; makuyana 2004; mkandla & matarutse 2002). those who remained behind in group homes are catered for by special institutions and residential rehabilitation hospitals that are scattered in many developing countries (hungwe 2005; mpofu & shumba 2013; mpofu et al. 2012), as inclusion has its own limits (hansen 2012). other adolescents with physical disabilities are kept indoors by their parents for various reasons, including attitude-related reasons (choruma 2006). an example of an attitude-related reason would be when family members consider their children with physical disabilities as incapable of socialising with others (choruma 2006; mpofu 2003). people with disabilities tend to be less well accepted by the majority of people in some societies (ndawi 2000). the rejection of minority status groups is described in terms of stigmatisation (lazowski et al. 2012). many people who share mainstream cultural values stigmatise persons with disabilities, making statements about attributes of people with disabilities that are deeply discrediting (mpofu & harley 2000). they consider people with disabilities as less than fully human (corrigan & watson 2002; martz 2004). these attributes could be visible disability, skin colour, race or geographical cultural value. however, the more visible the attribute like a physical disability, the more stigma it attracts for the beholder, and the greater disruption it can cause to social relations, or personal relations with others (mpofu 2003). inclusive communities are concerned with the identification and removal of barriers to community adjustment, development and participation (ainscow 2003). inclusive communities have the potential to serve as the context for the creation of sustainable and free support systems and a means of communication adapted to meet the diverse needs of community members. inclusion in community is about the presence, participation and achievement of all community members. presence implies location, that is, where the individual is, and participation is concerned with the quality of his or her experience (ainscow 2003). although inclusive communities are not uniquely designed for vulnerable populations, they have been adopted by most communities as a basic strategy to influence and enhance the psychological well-being of their people with disabilities. the zimbabwe situation the zimbabwean government adopted the policy of an inclusive community in 1997 as a measure to enhance the psychological well-being of adolescents with physical disabilities (chakuchichi et al. 2003; mutamiswa & chakuchichi 2003). however, its implementation has been wrought with several challenges, some of which include the incompatibility of the programme with consumer cultures and continued negative attitudes of community members without disabilities towards those with disabilities (chidyausiku 2000; mpofu 2003). the inclusive communities’ programmes that are being implemented in zimbabwe and in other developing countries support western perspectives on disability. western perspectives on disability generally differ from african perspectives as the latter are based on local cultures (chakuchichi & chimedza 2003), and they operate from the broader attitudes of society (mpofu 2003). african societies as a rule view disability as a product of sin or a curse, and efforts to address challenges emanating from such causes must therefore be directed at the family and not the community level (chakuchichi & chimedza 2003; mpofu 2003; mpofu et al. 2012). this view is, however, not peculiar only to african cultures. it is also found in a wide range of religions, including those rooted in western societies. for example, from a christian perspective, the bible makes numerous references to diseases and disabilities as punishment from god for immoral acts, and efforts to address these challenges include repenting and having faith in god (deut. 27:27; john 5:14; matt. 9:2). zimbabwe currently has no legislation for inclusive communities (choruma 2006; mpofu et al. 2007). the operation of inclusive communities in the country is governed by policies instead of laws. zimbabwean inclusive policies are captured in the form of circulars that give guidance in inclusive communities in zimbabwe and are designed at department level. an example of such a policy is the director circular no 3 of 2001, which contains guidelines on providing equal access to education for learners with disabilities (chakuchichi & mutamiswa 2003). laws on inclusive communities’ services are necessary for the funding and accountability of these programmes (chakuchichi, chimedza & chinze 2003; mutamiswa & chakuchichi 2003). in the absence of any mandatory order stipulating the services to be provided, there can be no meaningful inclusive community services for adolescents with physical disabilities in zimbabwe. the absence of inclusive community laws in zimbabwe demonstrates that the country is not yet ready for the costs related to inclusive practices (mpofu et al. 2012a, 2012b). in fact, according to choruma (2006) and mpofu (2003), the country delegated the costs related to caring for people with physical disabilities to already poor communities. inadequate policies on the funding of inclusive community activities are evidenced in the country’s constitution. for example, section 83 of the zimbabwean constitution, which deals with the rights of persons with disabilities, limits the provision of services and resources by the state to people with disabilities (copac 2013). psychological well-being with disability psychological well-being is a multifaceted concept (kahneman & krueger 2006). it is generally believed that psychological well-being is made up of five key psychological aspects. these are autonomy and choice, having a purpose in life, positive relations with others, personal growth and self-acceptance (dolan, layard & metcalfe 2011; kahneman & deaton 2010). autonomy and choice involve displaying qualities such as self-determination, independence and regulation of behaviour from within (desmarais & savoie 2011; fredrickson 2001). adolescents with physical disabilities who are actualising their potential are described as exhibiting autonomous functioning and resistance to enculturation (laumann et al. 2006). they are also described as having an adequate internal locus of evaluation, that is, they do not need to look to others for approval but evaluate themselves by personal standards (fredrickson 2001). purpose of life refers to having beliefs that give adolescents with physical disabilities feelings that there is purpose in and meaning to life (dolan et al. 2011; kahneman & deaton 2010). adolescents with physical disabilities should also be expected to have varieties of changing purposes or goals in life such as being productive and creative, or achieving emotional integration later in life. positive relationships with others include the ability to love and are a central component of mental health (diener et al. 2009; kahneman & krueger 2006). self-actualising adolescents with physical disabilities are described as having strong feelings of empathy and affection and are further described as being capable of greater love, deeper friendship and more complete identification with others (diener et al. 2009). relating to others with warmth is posed as a criterion of maturity. adult development stage theorists (freud, erickson) support this view by emphasising the achievement of close unions with others and guidance and direction of others as a criterion of maturity. personal growth involves enhanced cognitive function among adolescents with physical disabilities, and confronting new challenges or tasks at different periods of life successfully (dolan et al. 2011; kahneman & deaton 2010). self-acceptance refers to a central feature of mental health as well as a characteristic of self-actualisation and optimal functioning and maturity (kahneman & krueger 2006). holding positive attitudes towards oneself by adolescents with physical disabilities thus emerges as a central characteristic of psychological well-being. this enhances self-acceptance by adolescents with physical disabilities – a central characteristic of psychological well-being (diener, lucas & oshi 2002). goal of the study this study aimed to explore the psychological well-being of adolescents with physical disabilities living in inclusive community settings of makonde urban in zimbabwe. we specifically aimed to facilitate accessing marginalised experiences and voices of adolescents with physical disabilities. method research design this study was guided by a constructivist perspective (braun & clark 2006; creswell 2012) and by the principles of thematic analysis (braun & clark 2006; creswell 2009, 2012). given that the aim of the study was to explore the psychological well-being of adolescents with physical disabilities, a phenomenological research approach in which adolescents with physical disabilities experiences and voices are foreground in both design and analysis was appropriate. 6.2. sampling and sampling techniques the purposively selected sample for this study comprised nine male and five female adolescents with physical disabilities. the sample enabled the researchers to collect adequate (rich) data for the study (cohen, kahn & steeves 2000; creswell 2007). to be included in this study, the adolescents must have been staying in inclusive communities of makonde urban continuously for a period of not less than 2 months. data collection consistent with the constructivist research perspective adopted in this study, open-ended interviews (baxter & jacke 2008; scholz & titje 2002) were used to collect data. participants responded to one-on-one interview questions based on a prepared interview schedule on how adolescents with physical disabilities construct their psychosocial well-being experiences in inclusive communities. the interviews were recorded using a mobile phone, with each interview lasting between 60 and 90 minutes. the notes and audio-tape recordings were used for the purpose of this study only, and they will not be made available to any other person or to organisations not involved in this study. the interviews were conducted, transcribed and analysed by the first author. data analysis strategies data were analysed following the thematic content analysis approach proposed by grbich (2004): becoming familiar with the data; transcribing of the interviews; creating codes linked to research questions by identifying key words and sentences; grouping codes into themes and the last stage involved reviewing themes, labelling them and selecting appropriate quotes to represent the themes. to enhance the dependability of our study, we allowed peer debriefing in this study in order to see agreement in data labels and the logical paths taken to arrive at those labels. in addition, we also ensured confirmability of the findings by making an audit trail to our study and authors reflexivity. we also provided thick description throughout our study to check for the transferability of our study. ethical consideration ethical approval reference number ep 15/04/01 for the study was obtained from the ethics committee of the university of pretoria. standard ethical principles of informed consent and voluntary participation, protection from harm, confidentiality and privacy were adhered to throughout the research process and of data collection and analysis. assurance was given that no person would be identified. findings and discussion the findings of this study are divided into four main sections: (1) autonomy and choice in life, (2) purpose of life, (3) positive relations with others and (4) personal growth and self-acceptance. these are the major attributes of psychological well-being identified by this study. autonomy and choice in life most participants (10 out of 14; 71%) in this study indicated that their participation in inclusive communities’ activities was contributing the development of their autonomy and choice. below, we present the verbatim data from the participants. chiwaridzo (pseudonyms are used) had this to say on autonomy: ‘because i am making progress at my university i have a feeling that i am being empowered. this empowerment is giving me some feelings of self-rule and choice. i selected subjects to take at advanced level and selected accounting at the costs of so many other programmes in the faculty of commerce. this choice is coming all as a result of learning.’ (participant 6, male, 19 years, myelodysplasia) another participant, jinye, said: ‘through using computers, i feel i am being equipped with abilities to make choices. games such as chess are all about making correct moves. if you move wrongly you are defeated so learning through games makes me develop making right choices not only in the game of chess but in life.’ (participant 7, male, 16 years, hemimelia) however, nyarai had a different perspective on how learning was influencing her autonomy and choice. she said: ‘learning was not doing enough to enhance my feeling of control over my choices. most of the materials i learn and do in my life is controlled by my parents and teachers my brothers, sisters and even friends. i am always told this is what i can do and i can’t do.’ (participant 3, female, 15 years, limb deficiency) dimingu said: ‘i do not have choice in my life my health condition is giving me limitations. i cannot even write a lot of school work or play with others for a long time because i easily get tired even if i want to.’ (participant 8, female, 15 years, epilepsy) jeff also said: ‘through play my social needs are addressed at group level. people need to be happy and this is possible when they have choices around them and if their choices are accepted by others they share time with. in my case i have visitors who come to our school and talk with us about our needs. we tell them some of our needs are addressed but most of them are not. however, we would have given out our choices.’ (participant 5, male, 15 years, traumatic brain injury) nyarai said: ‘the fact that i do not have my left leg controls me in choosing what i want to do in my community as long as it requires the use of the missing leg. what i am saying is my disability affects my choice.’ (participant 3, female, 15 years, limb deficiency) dimingu added: ‘i am not developing any choice. the choice is determined by my health. i have epilepsy it attacks me without notice and because of that you cannot just do anything you want my choice is limited.’ (participant 8, female, 15 years, epilepsy) our finding that adolescents with physical disabilities living in inclusive community settings tend to display good levels of autonomy is consistent with findings from gabre (2000) and gabre et al. (2002). gabre (2000) and gabre et al. (2002) asserted that less restrictive living arrangements for people with disabilities like living in inclusive communities led to increased prevalence of feelings of autonomy. these authors explain that these are positive developments because it means that people with disabilities living in inclusive communities tend to feel similar to their peers. conversely, emerson et al. (2009) found out that people in the united kingdom (uk) who require ongoing support with daily living tasks (common to people with physical disabilities) and have very limited verbal communication (e.g. those with severe cerebral palsy) are unable to express their opinions and preferences and therefore rely on others to help them take important decisions. mpofu and shumba (2013) also found out that people with disabilities in zimbabwe were not being given an opportunity to talk about their health problems when they visit doctors. instead, their ‘substitute decision-makers’ were responsible for making decisions on their behalf, including when to go to the clinic. in this study (mpofu & shumba 2012), participants indicated that they were being stereotyped as incompetent patients, unable to present or articulate their health care needs. purpose of life twelve out of fourteen participants (85%) in this study said that their participation in inclusive community activities was helping them to develop feelings of having a sense of purpose in life. for instance, chiwaridzo had this to say on purpose of life: ‘i am satisfied with the progress i have made in my life. i am doing well more than what other people of my age without disabilities do. it’s an achievement to be at a university considering that i have a disability. i am satisfied and have no problems.’ (participant 6, male, 19 years, myelodysplasia) walter had a different view on learning. he said: ‘the learning i am getting is unsatisfactory. i am being taught things that are not of much benefit to my life. i want to be a truck driver. i admire my uncle who drives a truck. instead of being taught math’s english and others which takes a lot of time to be employed they must teach me driving.’ (participant 10, male, 14 years, spinal cord injury) jinye said: ‘i was going to be satisfied with my life if i was learning carpentry. the learning i am getting both at school will never give me the life i want to live. i want to be a carpenter.’ (participant 7, male, 16 years, hemimelia) kombo has this to say on purpose of life: ‘when i participate in social issues with my peers with and without disabilities i get happy. i also get happy when i am consulted over my life.’ (participant 11, female, 13 years, polio) try said: ‘i learn more about my condition at home from my parents, others who live with hiv like me. these people are very important. they have made me understand my condition and that i can live a normal life like any other person living without hiv. they have made me understand that i am a person like any other person in my community. they have made me know that what is.’ (participant 13, female, 15 years, hiv positive) this study’s findings are similar to the findings of nygren et al. (2005), who found that people with disabilities in the uk who live in inclusive community settings achieved high scores on the perceived purpose in life test (kahneman & deaton 2010) and the self-transcendence scale (dolan et al. 2011). although this finding is consistent with nygren et al.’s (2005) finding, albrecht and devlieger (1999) suggest that it is not purpose of life per se that is enhanced but, instead, blissful feelings about a real purpose in life. albrecht and devlieger (1999) built on the work of so levine to examine the following disability paradox: people with serious and persistent disabilities living in inclusive communities often report that they experience a keen sense of purpose of life when, to most external observers, these individuals seem to experience an undesirable daily existence. closer analysis of albrecht and devlieger’s (1999) interviews revealed that some of the participants indicated that they were in fact not expecting a brighter future. positive relations with others eight out of fourteen participants (57%) in this study reported to have good relationships with their peers, evidenced by the following examples. langton said: ‘as learners, we are always a family be it at school or home. i have friends, i belong to group c, i am in grade 4 we wear a blue uniform the whole school. when we are at sports we support one team our school and if we win we all get happy if we lose we all get sad.’ (participant 2, male, 14 years, neuromuscular disorders) another participant, try, said: ‘we learn in groups be it at home or school. at my home, our parents teach us good manners. if we behave well as a family, they become happy. if one of us do something bad our parents gets angry. they teach us how to do well before visitors and where ever we are. we also help each other by telling ourselves to do well as people belonging to our family.’ (participant 13, female, 15 years, hiv positive) kevie said: ‘my involvement in so many issues with my friends and being consulted on issues around my disabilities makes me feel that i belong to the same group as others without disabilities in my community.’ (participant 1, male, 18 years, cerebral palsy) kombo said: ‘i have learnt to respect my friends through playing with them in my community. of course, we learn it at school at assemblies, social studies and religious studies but we do it out of school. you see that you are doing it well mostly when you are not in class.’ (participant 11, female, 13 years, polio) the finding that living in an inclusive community enhances development of their positive relations with others among adolescents with physical disabilities is consistent to research findings by magiati, dockrell and logotheti (2002). these authors carried a study on young greek children’s understanding of disabilities in terms of the influence of development, context and cognition in children’s representations of different disabilities. seventy-nine 8to 9-year-old and 10to 11-year-old greek children with disabilities living in inclusive settings were involved in the study to see if they were selecting friends based on individual differences such as disabilities. children from an urban school and rural communities were involved in the study. in their responses to interviews on their attitude on inclusion, they provided generally positive views of inclusion (magiati et al. 2002). however, children were less positive about activities that might directly reflect upon themselves. children’s responses in the interviews indicated that they were developing rich representations of differences and diversities. children had the greatest understanding of sensory and physical disabilities and indicated that living in inclusive communities was improving their relations with peers with and without disabilities. positive relationships with others are very important for successful adjustment and integration of people with disabilities. experiencing positive relations with others also plays an important role in facilitating social and moral development of human beings (heward 2003). this explains that being in an inclusive community is not just enough to promote positive relations with others for people with physical disabilities, what really matters is whether people exhibit their acceptance for people with disabilities. personal growth and self-acceptance personal growth was an inclusive community quality endorsed by all participants (100%). on personal growth and self-acceptance, chiwaridzo said: ‘because of being engaged in learning i feel i am growing well. i can now do a number of things by myself. i can read, write and am adding value to myself very soon i will be an accountant.’ (participant 6, male, 19 years, myelodysplasia) langton also said: ‘going to school makes me learn so many things. learning so many things this shows that i am growing. i was once in grade one but i am now in grade four. i have changed so many teachers and all my teachers are saying well you are growing well. look i am now able to do so many things alone at home things that i was not able to do before because of my condition. i am now seeing that i am not disabled. i am growing up.’ (participant 2, male, 13 years, neuromuscular disorder) try said: ‘sport is assisting me growing all-round. it helps me to play well with others although it is painful when you lose. but it helps me a lot. my participation in sport makes me feel that i am being recognised at school as a person who is not disabled but abled.’ (participant 12, female, 14 years, hiv positive) another participant, jinye, said: ‘in chess you win, lose or draw. these are the results awaiting any chess player so when i win like in most of my cases i felt great and my supports will value me more. at my school if i win or lose my head always see well in me. i will be put in front of other students on the assembly and the students will be asked to clap hands and cheer for my results. besides that, if i win at school, level. win again with other schools that movement from one stage to another makes me feel growing in my sport.’ (participant 7, male, 16 years, hemimelia) our finding is consistent with gallant’s (2003) findings on the influence of social support systems such as inclusive communities on chronic illness self-management. gallant (2003) reviewed empirical literature examining the relationship between inclusive communities and chronic illness and self-acceptance. he identified 29 articles, of which 22 were quantitative and 7 were qualitative. the majority of research in this area concerns diabetes self-management, with a few studies examining asthma, heart disease and epilepsy management. taken together, these studies provide evidence for a modest positive relationship between living in inclusive communities and chronic illness self-acceptance, especially for people with diabetes. dietary behaviour appears to be particularly susceptible to social influences. in addition, being a member of a social network has a potentially important influence on self-acceptance. it seems that there is a need to elucidate the underlying mechanisms by which inclusive community settings influence self-acceptance and to examine whether this relationship varies by disability, type of support and behaviour. there is also a need to understand how the social environment may influence self-acceptance in ways other than engaging people with physical disabilities in various physical activities in their communities limitations of the study one limitation of this study is that this study’s sample was culturally homogenous. the majority of the participants in this study were adolescents with physical disabilities in primary school education (93%). as such, the participants of this study only represent a restricted range of social experiences, and therefore, the findings may not accurately represent the experiences of those from culturally and linguistically diverse backgrounds (baum 2003). for instance, an adolescent with a physical disability from secondary school level, or university level and non-shona speaking western culture may hold different meanings of inclusive community activities and feelings, which may have implications for how they respond to community strategies that invite them to participate in community activities. research that includes participants with socio-economic diversity should help to clarify the role of social class in choices and participation in inclusive communities’ activities. recommendations based on the complex nature of the interaction between aspects such as inclusion, disability, psychological well-being and public policy, several recommendations can be made for populations with similar characteristics as the one covered by this study. this study recommends the need for further research on inclusion, disability and psychological well-being. discourse analysis that investigates the relationship between inclusion and psychological well-being of adolescents with disabilities could lead to improved implementation of inclusion. the findings of such studies could guide the development of inclusive policies that encourage community participation of non-dominant cultures such as people with disabilities in designing community activities that enhance their personal development. conclusion the psychology of well-being is devoted to promote our understanding of the biopsychosocial and behavioural factors that contribute to enhanced well-being, optimal emotional processing and the prevention of psychological dysfunction. the overall result of this study, namely that participation in inclusive communities by adolescents with physical disabilities is particularly conducive to the development of their psychological well-being, adds to the body of knowledge in the field of psychological well-being of people with disabilities. acknowledgements this article is based on research that has been 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through inclusive approaches in education conceptual paper, unesco, paris. unesco, 2005, guidelines for inclusion ensuring education to all, unesco, paris. world health organization, 2004, icf: international classification of functioning, disability and health, who, geneva. abstract introduction literature review research methods and design results discussions conclusion acknowledgements references about the author(s) takalani m.m. mamafha department of information science, college of human sciences, university of south africa, tshwane, south africa patrick ngulube department of interdisciplinary research and postgraduate studies, college of graduate studies, university of south africa, tshwane, south africa luyanda dube department of information science, college of human sciences, university of south africa, tshwane, south africa sindile a. ngubane institute for open and distance learning (odl), college of education, university of south africa, tshwane, south africa citation mamafha, t.m.m., ngulube, p., dube, l. & ngubane, s.a., 2023, ‘availability and use of assistive technologies at selected south african public libraries’, african journal of disability 12(0), a1141. https://doi.org/10.4102/ajod.v12i0.1141 original research availability and use of assistive technologies at selected south african public libraries takalani m.m. mamafha, patrick ngulube, luyanda dube, sindile a. ngubane received: 18 nov. 2022; accepted: 19 may 2023; published: 31 aug. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: assistive technologies (ats) enable persons with visual impairment (pwvi) to equitably benefit from public library resources and services as their sighted counterparts. however, the extent to which this facility is available and used at public libraries in less-developed countries remains largely unknown. objectives: this study reports on the investigation done on the availability and use of ats by pwvi at public libraries in the cities of ekurhuleni and johannesburg in south africa. method: the study used a multimethod and explanatory sequential design in which data were collected through questionnaires administered with 131 librarians and interviews held with 10 pwvi. results: the findings of the study point towards inadequate availability of computers with internet services, audiotapes, screen magnifying and reading software, and these were used for, among others, leisure, research, job searching and communication. conclusion: the study concludes that certain ats were inadequately available and used by pwvi at some libraries in the cities of ekurhuleni and johannesburg. the study recommends training for pwvi on how to use ats, marketing of available ats, training of staff on how to render at-based services as well as management availing adequate budget for the development of at-based collection. contribution: the study contributes to the understanding of the types of ats available and used by pwvi in public libraries. keywords: assistive technologies; persons with visual impairment; print disability; city of ekurhuleni (coe); city of johannesburg (coj); south africa. introduction the availability and use of assistive technologies (ats) by persons with visual impairment (pwvi) in public libraries are topical and part of the global inclusive agenda towards the implementation of the sustainable development goals (sdg) and the united nations convention on the rights of persons with disabilities (uncrpd) (tebbutt et al. 2016). given their role as equalisers of information access, ats in public libraries have radically transformed service delivery to pwvi. notably, these have been denied opportunities to access and use library resources and services due to decades of institutionalised global discrimination (majinge & stilwell 2013). prior to introducing ats in public libraries, pwvi had limited access to and use of electronically available library resources and services (lee 2005) as they largely relied on library staff for assistance. however, pwvi presently enjoy freedom of independence and choice in public library service due to the adoption and introduction of applications such as e-books, electronic mail and the internet (lee 2005). these devices are essential tools in restoring pwvi’s dignity and self-esteem in public library usage (lee 2005). the world health organization (who) defines assertive technology is any item, software programme, equipment or product system that is used to maintain, increase or improve the functional abilities of persons with disabilities (who 2018). in the context of libraries, ats refer to hardware and software devices that assist persons with disabilities to access computers or other information technologies. for pwvi library users, the combined hardware and software include: (1) reading machine, (2) video conferencing, (3) computers and their internet-based services, (4) screen reader, (5) braille writing equipment, (6) braille translation software, (7) braille embosser, (8) scanners and (9) closed-circuit television (cctv) that enable pwvi to access information resources and services such as electronically accessible books and newspapers (adetoro 2011; anis 2017; new york public library 2018). besides compensating for the vision impairment and facilitating access to information and communication of the pwvi, these devices, according to eligi and mwantimwa (2017), provide an opportunity for users to learn new skills required for them to benefit from electronically based services same way as their sighted counterparts. for instance, ats enable pwvi ‘who are partially sighted persons who may not read standard print with remedial lenses’ (who 2018) to chat with friends, study, conduct research and read from original information sources available on the world wide web (www) at the same time as everyone else (golub n.d.). public libraries in developed countries of the world such as the united kingdom, the united states, canada and australia are adopting and using ats as a way of complying with their countries’ disability laws (kinnell, yu & creaser 2000). for instance, there is the disability discrimination act (dda) in the united kingdom (uk) and the americans with disabilities act (ada) in the united states. in the case of the global south, south africa has developed numerous policies and legislations that advocate for speedy and effective implementation and use of ats at public libraries with a view to ensuring equalisation of access by all to library services. these include the library and information services (lis) transformation charter, national policy for libraries and information services in south africa, south african public library and information services bill 2012, as well as batho pele (people first) white paper on transforming public service delivery, which focuses on giving improved customer service to users of government service’s (department of arts and culture 2018; department of social development n.d; gauteng provincial government n.d; mamafha, ngulube & ndwandwe 2016; national library of south africa [nlsa] 2018). developments in these principles, policies and legislations were influenced by the government’s realisation that ats have the potential to provide hope in overcoming access barriers which pwvi have been subjected to for several decades (mamafha et al 2016). cities of ekurhuleni (coe) and johannesburg (coj) municipality libraries, which are the subjects of this study, are, therefore, among libraries in south africa that should have certain types of ats to enable pwvi to equally access and use library resources and services as their sighted counterparts. this is in line with the international federation of library associations and institutions’ manifesto for libraries serving persons with a print disability, which aims to improve and promote accessible lis to pwvi. the availability of ats in these libraries would ensure equalisation of access to computerised resources and services for all irrespective of a person’s age, gender or nature of the disability. context of the study public libraries in the coe and coj municipalities are located in the gauteng province of south africa. there are 47 libraries in coe located in the city’s three regions, which are south, north and east (city of ekurhuleni 2021). the coj has 86 libraries that are situated in its seven regions that are a–g (joburg 2018). the selection of libraries for the study was based on their self-proclaimed status of being leaders in service delivery to communities with well-developed telecommunication infrastructure. given this proclamation, it was necessary to establish whether targeted libraries had relevant devices and services for pwvi. among the services rendered by these libraries include, but are not limited to, lending, reference, interlibrary loan, computer and internet-based services, fax, printing and photocopy, scanning, lamination and wireless network (joburg 2018; mamafha et al 2016). public libraries in the two cities have transformed into centres of learning, allowing the public to have access to a range of information sources such as online magazines, audio material and electronic books (ekurhuleni metropolitan municipality [emm] n.d.; joburg 2018). furthermore, e-learning classrooms equipped with computers, giving users access to online courses such as coding, as well as access to e-resources including online academic sites, online newspapers and articles, are also available in some libraries (joburg 2018; mamafha et al 2016). despite these positive developments at libraries in these cities, questions abound about whether these advancements extend to the availability of special access devices for pwvi against decades of global service inaccessibility for persons with disabilities. evidently, library services have been designed to suit the needs of the sighted more than pwvi (ibenne 2012; majinge & stilwell 2013), hence this study. against the above background, this study aimed at establishing whether ats were available and readily in use at public libraries in coe and coj. this was necessary to support the demands for libraries’ continued investment on ats and their related services where they were available and ensure their effective utilisation. alternatively, it sought to motivate public libraries’ acquisition of ats where they were unavailable to facilitate improved access to services for pwvi. in the process of establishing ats’ availability and use, reasons for their use and nonuse were also looked at. furthermore, the difficulties faced by users in using ats and how they could be alleviated were also investigated. although a similar study conducted by kinnell et al. (2000) found that certain ats were available and used at manchester city libraries, it was dated and based on the situation within the context of uk public libraries at the time. this study is aimed at establishing baseline understanding of the phenomenon within the context of public libraries in south africa given the scarcity of research on the subject. the study was guided by the following research questions that were informed by the international federation of library associations and institutions (ifla) manifesto mentioned earlier: what types of ats are available and used by pwvi at the cities of ekurhuleni and johannesburg libraries? what are the reasons for the use of ats by pwvi at the cities of ekurhuleni and johannesburg libraries? what difficulties are faced by pwvi in using ats at public libraries in the cities of ekurhuleni and johannesburg? how could the difficulties faced by pwvi in using ats at ekurhuleni and johannesburg public libraries be alleviated? conceptual framework the ifla manifesto for libraries serving persons with a print disability provided a conceptual framework of the study to better understand the types of devices that public libraries in ekurhuleni and johannesburg should have to improve access and use of library resources and services by pwvi, thus enabling service inclusivity. the manifesto recommends that for libraries to meet the identified needs of users with a print disability, they should: (1) have as part of their core services, certain technological devices, equipment and facilities that comply with universal design principles to enable persons with a print disability to access and use the available technologies, (2) improve the information and communication technologies (icts) skills of pwvi through training, (3) partner with relevant stakeholders in the service and (4) involve persons with a print disability, including organisation or groups representing them, in the planning, development and ongoing delivery of services (ifla 2012). the first recommendation resonates well with this study, thus implying that for the pwvi to have equal access to all public libraries’ information and services, public libraries should provide specialised access devices that comply with universal design principles. these, according to the checklist developed by irvall and nielsen (2005) for ifla, include accessible websites, audio tapes, compact disc (cd), digital video disc (dvd) or digital accessible information system (daisy) players. although evidence of the use of this manifesto by other scholars in previous studies could not be found, which brings another important dimension of originality to this study, it provided a foundation for the current research and structure within which a problem under analysis could be understood while acting as a footprint for future researchers. this framework helped in formulating the research questions as well as explaining the relationship between public libraries and their users in the context of ats availability and use. literature review types of assistive technologies available for persons with visual impairment in public libraries adetoro (2011) opines, ‘the principle underpinning library and information service provision to persons with visual impairment should be that of availability and equality of access to information materials’. literature on the types of ats available for pwvi in public libraries is limited, generally dated and within the context of libraries in developed countries. kinnell et al. (2000), for instance, conducted a similar study in the uk whose results suggested that reading aids, including magnification aids (cctv, zoom-text computer screen magnification software), speech recording facilities (those linked to reading machines to permanently record the spoken text), speech systems (reading machine and various screen readers) and alternative output facilities (embossers that produce disk files in braille) were available at manchester city libraries. the same study found that reading machines, printers and other related aids were available at tameside libraries. a study by share the vision (1991) revealed that at least one cctv was available at 38% of selected uk public library authorities, while at least one reading machine was available at 23% of library authorities. furthermore, the study found that 7% of library authorities had computerised braille input or output devices while 26 out of 61 libraries had reading aids including magnifiers, cassette players, reading machines, cctv and even computerised devices and software. also, the study established that nine authorities had only magnifiers and/or cassette players. the literature review also reveals that the heiskell braille and talking book library in new york had handheld magnifiers, braille writer, a perkins smart brailler, an intact sketchpad for creating tactile drawings, a victor reader and apple computer (new york public library 2018). in nigeria, adetoro (2014) conducted a study on information provided to the visually impaired and found that the availability of alternative formats was inadequate while electronic resources were unavailable in public libraries. in south africa, the extent of availability of public library ats for pwvi is unknown. this is despite the claim made by the south african library for the blind (salb) (n.d.), rowland (2008) and education news south africa (n.d.) that, advanced reading assistive devices including document reader, victor reader for audiobooks, cds and dvds are available in south african public libraries in the form of a mini-library service sponsored by the salb. this claim has yet to be empirically validated, hence this study. use of assistive technologies by persons with visual impairment in public libraries though the literature on the subject is dated, there is consensus among researchers regarding the types of ats used by the pwvi including reasons for their usage. bruce, mckennel and walker in adetoro (2011) found that pwvi users of uk libraries used personal readers, tape recording and braille readers. davies, wisdom and creaser in lewis (2004) found that a majority of the 581 pwvi using uk public libraries mostly used speech software, text enlarger and a screen magnifier. lewis (2004) also found that electronic reference devices including cd-rom and www were used by pwvi at the royal national institute for the blind (rnib) public library. this was so even though very few (12.5%) of the sampled population used the devices or service compared to 87.5% of those who did not use it. the use of an electronic library catalogue was also acknowledged by the same study. in india, the study in the leading national capital region (ncr) libraries by kumar and sanaman (2013) found that audiobooks on cds, dvds and daisy books were the most used electronic devices and resources in the libraries. however, pillai (2013) found that some users of libraries in india did not use electronic access devices and resources due to perceived complexity and difficulties in using them. in africa, the extent of use of public libraries’ ats for pwvi is generally unknown. although the study by adetoro (2014) found that the use of information material in an alternative format in oyo, ekiti, osun and ondo in nigeria was limited by availability, there is generally a lack of empirical evidence on the extent to which pwvi use ats within the context of other african public libraries including south africa. in fact, a similar study by mamafha et al. (2016) in south africa mainly focused on the use of technologies for the mainstream users of ekurhuleni libraries where it was found that the facility was highly utilised by most users. common reasons for the use of ats by pwvi at public libraries included information search, general browsing, online shopping, job searching, studying towards a qualification, chatting, news, banking, entertainment and instant messaging (lee 2005). for instance, wallis, morley and wallis (2000) found that users of the royal victorian institute for the blind library and information services (rviblis) in australia used voice print devices to access the library catalogue, listen to the latest titles available and listen to a catalogue listing of any title, including a brief annotation. the technology, according to the study, was also used for ordering books and accessing the full editorial text of publications such as the age, australian financial review, business review weekly, sydney morning herald, the melbourne herald sun, the adelaide advertiser and the australian (wallis, morley & wallis 2000). difficulties faced by persons with visual impairment in using assistive technologies in public libraries the pwvi may, in fact, face a lot of difficulties in using ats in public libraries. the setback is likely to cut across all the diverse types of libraries, namely, school, academic or public. such impediments arise because of the lack of relevant equipment necessary for public libraries to respond to the ever-increasing reading and information needs of the users (adetoro 2009). furthermore, some pwvi lack the knowledge and skills to use their tailor-made ats in public libraries. adetoro (2009), rayini (2017) and eligi and mwantimwa (2017) identify limited financial and human resources, staff attitudes, technophobia and the lack of appropriate disability-friendly policies and their proper implementation. for instance, the study by the library of congress (loc) (2012) in the united states found that the major difficulty faced in providing library services to pwvi through the national library service (nls) was pwvi’s (and their next of kin) lack of knowledge to operate the technology due to skill deficit. ejedafiru and oghenetega (2010) and the national library of south africa (2014) identified limited financial and human resources as some of the difficulties faced by pwvi in nigeria and south africa, respectively. although the availability and use of ats by pwvi in academic libraries have been subjects of numerous investigations in nigeria, tanzania and other developing countries in recent years (abdelrahman 2016; eligi & mwantimwa 2017; ibenne 2012; kumar & sanaman 2013; obichere 2011; onoyeyan 2019), this subject matter remains largely unexplored within the context of public libraries, particularly in south africa. the ensuing gap has created scope for this study. research methods and design this article adopted the pragmatist paradigm using explanatory sequential design with a view of looking at the studied phenomenon from a broader perspective (creswell 2014:10). multi-methods were used for the researcher to get comprehensive viewpoints from study participants on the pwvi’s use of ats at selected public libraries. the integration of quantitative and qualitative methods occurred at the research questions, data collection, results and discussion stages of the research. the use of multi-methods enabled the researcher to collect statistical data from librarians using questionnaires that yielded information on the types of ats available and used at selected libraries. it also allowed for the collection of descriptive data from pwvi using an interview schedule that provided insight into why ats and their related services were used. the population of the study was all 131 coe and coj public libraries combined, of which 45 belonged to coe and 86 belonged to coj. lists of libraries in the two cities were provided by the librarians and validated by their respective websites after permission for the study to be conducted was granted by the respective directors. given its manageable size, the entire population of this study was sampled using total population sampling. within the libraries, all 131 librarians in charge of the selected libraries were targeted as respondents in the initial phase of the study. also targeted for the study were the entire 10 registered pwvi (five from coe and five from coj libraries). triangulation of data collection instruments was adopted using e-mailed questionnaires and interviews to gather data from librarians and pwvi, respectively. this was to ensure the reliability and validity (quantitative) and trustworthiness (qualitative) of the data gathered. data collection happened sequentially in which data (both in quantitative and qualitative form) were collected first using questionnaires. this was followed by the gathering of qualitative data from pwvi by means of an interview schedule. prior to data collection, permission to conduct the study was sought from and granted by the lis directors of the two cities. meanwhile, an ethical clearance certificate was obtained from the university of south africa (unisa). questionnaires consisted of eight mainly quantitative questions in which librarians had to select the most appropriate answers from several given alternatives. however, librarians were also asked to provide answers to qualitative-oriented questions on the difficulties faced by pwvi in using ats and how these could be alleviated. librarians were given 3 weeks to complete and return questions, which was to reduce errors that would have occurred had limited time been given for their return. the research questions wherein the questionnaire was applied as a data collection tool were the following: (1) what types of ats are available for pwvi at ekurhuleni and johannesburg libraries? (2) what are the reasons for the use of ats by pwvi at ekurhuleni and johannesburg libraries? (3) what difficulties are faced by the pwvi in using ats at ekurhuleni and johannesburg libraries and (4) how could they be alleviated? meanwhile, telephone interview sessions (which each lasted for 15 minutes in which respondents answered six questions) were held with 10 targeted pwvi to gather more detailed information on their use of ats as well as difficulties encountered during usage. a digital audio voice recorder was used in recording the interviews by converting the recorded speech to a text transcript. the research questions applicable to the interview schedule as a data collection instrument were the following: (1) what are the reasons for the use of ats by pwvi at ekurhuleni and johannesburg libraries? and (2) what difficulties are faced by pwvi in using ats at ekurhuleni and johannesburg libraries, and how could they be alleviated? consent for the study was sought from participants who were all informed that their participation was voluntary and that they could withdraw from the study at any given time. meanwhile a voice recorder was used to record each of the interviews with 10 pwvi. ten librarians and four pwvi portraying the actual participants in the final study were carefully chosen for the pretest. the total number of questionnaires returned for the main study was 80 (30 from coe and 50 from coj), representing 61% of the questionnaires received and analysed. quantitative data were presented in tables and analysed by showing central tendency and spread. qualitative data were analysed through verbatim transcription, which is converting audio recordings of interviews to text format. in this instance, the recorded responses were converted into text and meaning was drawn from the data collected. ethical considerations an application for full ethical approval was made to the unisa department of information science research ethics review committee, and ethics consent was received on 01 december 2017. the ethics approval number is ‘2017_tmmmamafha_34666249_001’. informed consent was obtained from all individual participants involved in the study. these include written consent from librarians and oral consent from the pwvi. the preference for oral consent with the pwvi was informed by its usability when dealing with persons who may not read or understand the standard text unless it is converted into the language they are acquainted with. also, researchers were unable to find a knowledgeable and willing participant to convert the standard text to braille, which could be read by pwvi, at a reasonable cost at the time of the study. the measures taken to maintain the confidentiality of the data was as follows: the participants’ personal information was not required for the purpose of this study as a way of guaranteeing their anonymity. information provided by participants was not used for anything other than the purpose of the study. information provided by participants was not to be used to disadvantage them in any way soon. results the results that are presented in this section are based on the research questions of the study. age distribution of respondents the profiles of librarians reveal that the majority were older than 40 years. these were followed by those between the ages of 35 and 40 years. those between the ages of 26 and 34 years were few as seen in table 1. in south africa, middle and senior library management positions are occupied by older persons who will be eligible for retirement in few years to come (van der walt & du plessis 2010). table 1: age profiles of librarians. the above profiles for pwvi show that the majority were above the age of 40 years except for one who was within the age range between 36 and 40 years. there were more males in this category than females as seen in table 2 meanwhile, the occupation of the pwvi reveals that the majority were unemployed while the remaining few were university students as shown in table 2. in south africa, a report by blind south africa (blindsa) in the daily maverick (2022) indicates that over 90% of blind and visually impaired people are unemployed. table 2: age profiles of persons with visual impairment. types of assistive technologies available for persons with visual impairment at ekurhuleni and johannesburg public libraries the first objective of this study was to assess the availability of ats at public libraries in ekurhuleni and johannesburg for pwvi. at first, librarians were asked to answer, in a yes or no question format, whether ats were available in their libraries. in response, 18 (22%) librarians indicated ‘yes’ against 62 (78%) who stated that they were not. in terms of municipalities, 14 (18%) coe librarians indicated that at-based service was available against 16 (20%) who said it was unavailable. a similar trend was noted in coj, wherein only 4 (5%) librarians indicated that their libraries had ats compared to 46 (57%) that said theirs did not have them. further details of the types of ats available in 18 (22%) of the targeted libraries were sought from librarians of which 14 (18%) were from coe while 4 (5%) were from coj. the finding revealed that audiotapes (cds, dvds and daisy players), computers with internet services, scanners, screen magnifiers, screen readers and braille displayers were inadequately available at some of the targeted libraries as shown in table 3. table 3: types of assistive technologies available for persons with visual impairment at public libraries in ekurhuleni and johannesburg (n = 18). it is clear from table 3 that cds and dvds were equally available in most libraries in coe. also available were daisy players and computers with internet services in the municipality, although in a limited capacity. furthermore, fewer libraries had fax machines, scanners, screen readers, screen magnifiers and braille displayers as shown in table 3. in coj, cd, dvds, fax machines, computers with internet and scanners were available at few libraries as shown in table 3. in nigeria, adetoro (2014) found that the availability of alternative formats was limited while electronic resources were unavailable. use of assistive technologies at ekurhuleni and johannesburg public libraries by persons with visual impairment the second objective of the study was to determine the use of ats at public libraries in ekurhuleni and johannesburg by pwvi. eighteen librarians whose libraries had ats above were asked (in a yes or no question format) to indicate whether the available ats were used or not. in response, eight (10%) librarians, of which six (8%) were from coe and two (3%) were from coj, indicated that ats in their libraries were used by pwvi, while 10 (13%) librarians, of which 8 (10%) were from coe and 2 (3%) from coj, stated that theirs were not utilised. this finding is consistent with that of the subsequent qualitative study, which established that most pwvi (6 out of 10 of which 3 were from coe and 3 from coj) did not use ats. meanwhile, respondents whose library ats were used were to identify the types of ats used and their responses are provided in table 4. table 4: types of assistive technologies used by persons with visual impairment at public libraries in ekurhuleni and johannesburg (n = 8). table 4 clearly reveals that a range of devices including cds, dvds, daisy players and computers with internet services were used in coe libraries but on a limited scale. the situation is almost the same in coj libraries where cds, dvds and computers with internet services were used by pwvi. this finding is consistent with that of the subsequent qualitative strand, which revealed that pwvi used audiotapes (cds, dvds and daisy players) and computers with internet services as shown in the verbatim responses below: ‘i use cds in the library to listen to music as well as to read books loaded in those cds.’ (46-year-old, female, coe library user) ‘i use audio cds, tape audio and victor reader [victor recorder] to listen to the story and whatever they come with.’ (60-year-old, female, coj library user) ‘i use a computer with internet to browse through the web for information.’ (40-year-old, male, coe library user) ‘i use computers with internet for the purpose of conducting some research for my university study.’ (56-year-old, male, coj library user) the study in the leading ncr libraries by kumar and sanaman (2013) found that audio books on cds, dvds and daisy books were india’s most used at devices. furthermore, the above eight librarians who stated that ats in their libraries were used were asked to provide, choosing from the list provided, what they considered to be the reasons for pwvi’s use of ats. among the reasons provided by coe librarians included study, leisure or general browsing, independent learning and job searching. the reasons for ats usage in coj libraries followed almost a similar trend in that independent learning, job searching, banking, access to the internet and study purpose were identified as reasons for their usage as shown in table 5. table 5: reasons for the use of assistive technologies by persons with visual impairment at public libraries in ekurhuleni and johannesburg (n = 8). consistent with the aforementioned finding, the subsequent qualitative result revealed that pwvi used ats for leisure, study, research and web browsing as reflected in the following responses: ‘listening to music and reading books loaded to the cds is the main reason for my use of library ats.’ (46-year-old, female, coe library user) ‘i use internet in the library to get information for research purpose.’ (56-year-old, male, coj library user) ‘browsing the web in order to access information is the main reason i use library ats.’ (40-year-old, male, coe library user) the study by lee (2005) also found that information search, general browsing, online shopping, job searching, studying towards a qualification, chatting, news, banking, entertainment and instant messaging were some of the reasons for pwvi’s use of ats in libraries. meanwhile, 10 (13%) librarians, of which 8 (10%) were from coe and 2 (3%) were from coj, whose library ats were not used requested to provide (by selecting from the list of given possible answers) what they considered to be the reasons behind the non-use of the ats by pwvi. responses are provided in table 6. table 6: reasons for nonuse of assistive technologies by persons with visual impairment at ekurhuleni and johannesburg public libraries (n = 10). table 6 shows that the unavailability of preferred ats in libraries was regarded as the reason for the nonuse of the technologies in both the study settings. nevertheless, some librarians from coe viewed the perceived complexity of ats as the reason behind their nonusage while others from the same municipality thought pwvi’s lack of knowledge of the existence of ats in public libraries was the reason behind nonutilisation of ats. few librarians from coe selected pwvi’s lack of skills to use the technologies as the reason. the ensuing qualitative study yielded similar results in that unavailability of ats, difficulties associated with the use of ats, users’ lack of ats usage skills and lack of knowledge of the existence of ats in libraries were identified by pwvi as reasons for nonuse of the technologies at libraries in the two cities as reflected in the following responses: ‘i prefer to use the computer with jaws software to download books, but the facility is not available in the library i am registered with, hence my none-use of other available equipment.’ (55-year-old, male, coe library user) ‘i do not have the skills necessary to use ats available, hence my reliance on staff, whom themselves do not seem to have the skills required to use the facility.’ (62-year-old, female, coj library user) librarians were further requested to indicate whether they considered ats in public libraries to be ‘very useful’, ‘less useful’ or ‘not useful’ in fast-tracking service delivery to the pwvi. while all respondents answered this question, most respondents from both coe and coj were of the view that ats were ‘very useful’. however, some believed that ats were less useful while the least number of respondents from both cities were of the view that ats were not useful as shown in table 7. table 7: usefulness of assistive technologies to persons with visual impairment in selected public libraries (n = 80). the above finding was corroborated by the result of the qualitative strand. for instance, six pwvi (four from coe and two from coj) indicated that ats were very useful while four (one from coe and three from coj) indicated that the devices and/or technologies were not useful. difficulties faced by persons with visual impairment in using assistive technologies in ekurhuleni and johannesburg public libraries the third objective of the study sought to establish the difficulties that pwvi faced in using ats in coe and coj libraries. this was necessary to recommend strategies for the alleviation of such difficulties for improved service delivery to pwvi. the realisation that several issues were likely to hinder ats usage in those libraries, which could result in their nonusage, led to the focus on this aspect. the quantitative finding revealed the difficulty of inadequate or lack thereof of preferred ats in libraries (coe and coj), pwvi’s lack of ats usage skills (coe and coj), inadequate or lack of funding in libraries (coe and coj), attitudes of staff (coe) and lack of ats’ knowledgeable personnel (coj). these are consistent with the below qualitative finding from the pwvi provided in verbatim responses: ‘the problem is that the facility i prefer to use is not available in the libraries visited.’ (55-year-old, male, coe library user) ‘some of us do not know how to use the devices, equipment or services due to lack of relevant usage skills.’ (62-year-old, male, coj library user) ‘lack of proper marketing of the available devices resulting in users’ lack of awareness of their availability in libraries, and poor internet speed are some of the difficulties i experience during usage.’ (46-year-old, female, coe library user) ‘lack of staff support is a serious problem, especially for some of us who do not know how to use the devices or service.’ (56-year-old, male, coj library user) a similar study by the loc (2012) in the united states found that the major difficulty faced in providing library services to pwvi through nls was pwvi’s (and their next of kin) lack of knowledge to operate the technology due to skills deficit. in south africa, the national library of south africa (2014) identified limited financial and human resources as some of the difficulties faced by pwvi using ats. strategies for the alleviation of difficulties faced by persons with visual impairment in using assistive technologies at public libraries in ekurhuleni and johannesburg both respondents were further asked to provide their views on how the difficulties faced by the pwvi in using ats could be alleviated for better future service planning by authorities. this question yielded several responses from librarians and pwvi. notable, though, were the similarities in the given responses. for instance, both librarians and pwvi identified proper marketing of available ats in public libraries; training of both pwvi and librarians on how to use and render services, respectively, using the available technologies; acquisition of additional but latest ats devices and services; and establishing a partnership with other relevant stakeholders in the service providers, as ways to mitigate against the difficulties faced. the following are some of the responses provided by some librarians and pwvi users in this regard: ‘proper marketing of the available ats should be prioritised to increase user’s awareness of the available technological devices.’ (librarian 1, female, coe) ‘staff members should be trained on how to interact and render services using the available assistive technologies. furthermore, an adequate budget should be allocated to facilitate procurement of ats as and when necessary.’ (librarian 2, male, coj) ‘latest computer technology should be procured so that pwvi can be able to use the library independently, and space should be reserved for persons with visual impairments in public libraries.’ (55-year-old, male, coe library user) ‘public libraries should partner with libraries for the blind so that they can benefit from their well-established stock consisting of a range of at devices for the benefit of their pwvi.’ (56-year-old, male, coj library user) ‘persons with visual impairment and organisations that represent them should be consulted when decisions are made on the types of ats to be procured and service to be rendered as they know what is best for them. further, properly skilled personnel should be appointed to render the at-bases service.’ (46-year-old, female, coe library user) discussions this study presents an overview of the availability and use of ats for persons with a visual impairment at public libraries in the coe and coj in south africa. the outcome of this study can be used to guide the municipalities and policymakers to improve the current situation of inadequate availability and use of ats as well as limitations for pwvi’s full participation in public libraries’ activities and services in the study settings. assistive technology can play an important role towards realising the sdgs and uncrpd goals that were ratified by south africa in 2007, which could be achieved through, among others, the inclusion of pwvi in mainstream public libraries services. the findings raise concern about inadequate availability and use of ats by persons with visual impairment, and serious issues hindering their availability and use include, but are not limited to, inadequate or the lack thereof of ats procurement budget, staff attitudes towards ats and pwvi, pwvi’s lack of skills to use ats and the lack of proper marketing of at-based services. given the above findings, authors in this study suggest that more still needs to be done in the face of inadequate availability of ats for persons with a visual impairment. in fact, the potential action suggested by the authors following this finding is that an adequate budget should be made available to facilitate the procurement of the latest ats that would meet the needs of users. it is common knowledge that there is inadequate, or lack thereof, services and resources meant for persons with visual impairment globally (adetoro 2014; who 2007). part of the reason for this is the lack of commitment by governments to support the service. the lis sector in south africa, for instance, had had trouble getting sufficient funds from the private sector and government (national library of south africa 2018). metelerkamp and banda (2022), for instance, reported that over the past few years, public libraries in both the western cape and gauteng have been subjected to a steady decrease in budget allocations with libraries expected to do more with less. inadequate availability of ats is thus against the principles of fairness and equality of access to services for all as advocated by the ifla manifesto for libraries serving persons with a print disability (2012). public libraries in the two settings are, therefore, called upon to level the playing field for everyone to benefit in the information stream. the fact that ats give hope to pwvi and other marginalised communities by enabling access to and use of library service implies that public libraries in ekurhuleni and johannesburg should invest more money in the at-based service for the above call by ifla to be realised. hence, the availability of ats such as computers with internet, cctv and reading machines in public libraries should not be an option but a mandate if the government’s goal of ensuring equalisation of access to services for all is to be realised. against the finding that indicates that the usage of ats by persons with visual impairment was inadequate, which could be attributed to reasons such as pwvi’s lack of at usage skills, attitudes of staff towards ats and pwvi as well as pwvi’s lack of awareness of their availability, the authors suggest that measures should be put in place to improve the current status quo. this means that pwvi should be trained on how to use ats available, proper marketing should be done by libraries to improve users’ awareness of the at-based services available, and the library and information association of south africa (liassa) should initiate and fund programmes and workshops that would empower library staff members to effectively work with and render at-based services to the users. dickard (2002) in mamafha et al. (2016) argued that for users to effectively use the technology available in libraries, they should not only know about their availability but also should possess the relevant skills required to use them. this study reported that pwvi experienced some difficulties in using ats at public libraries in the two study settings. notable were the similarities in most of the difficulties faced, which could be understood within the context of public libraries in the two cities sharing similar goals, services, values and system. the national library of south africa (2014) has identified problems such as financial and human resources as issues affecting the use of ats in south africa. the implication for this study is that all issues hindering service delivery to pwvi need to be addressed and opportunities created by them are exploited for public libraries to realise their goal of eliminating the exclusion of pwvi from accessing at-based resources and services. conclusion the study concludes that certain types of ats were inadequately available and used by pwvi at public libraries in the coe and coj. this was, in part, due to a range of difficulties that require management attention if libraries are to make a difference in the lives of the people with a visual impairment. given that access is a key factor in disability studies, future studies could investigate the extent to which ats are accessible to persons with visual impairment in public libraries. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.m.m. was the principal author and project lead. supervision was provided by p.n., s.a.n. and l.d. conceptualisation of the research idea and design and literature review was done by t.m.m. all four authors identified key points for and from analysis and critically reviewed the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the datasets are personally archived and will be deposited at the university of south africa’s (unisa) institutional repository after a year of publication of the results of the research. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references abdelrahman, o.h., 2016, ‘use of library technology and services by the visually impaired and the blind in the university of khartoum, sudan’, desidoc journal of library and information technology 36(3), 93–97. https://doi.org/10.14429/djlit.36.2.9803 adetoro, n., 2009, ‘information and communication technologies as an access equaliser of information: opportunities and challenges for nigerian’s persons with visual impairment’, information technologist 6(1), 115–122. 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http://www.vala.org.au/vala2000/2000pdf/wal_mor.pdf. world health organization (who), 2007, atlas: global resources for persons with intellectual disabilities, who press, geneva, viewed 11 february 2021, from http://www.who.int/mental_health/evidence/atlas/atlas_intellectual_disabilities_2007/en/. world health organization (who), 2018, visual impairment and blindness, viewed 20 july 2022, from https://.who.int/news-room/fact-sheets/detail/blindess-and-visual-impairment. abstract introduction bardet-biedl syndrome bardet-biedl syndrome and the african culture learners with bardet-biedl syndrome in school aim research methods and design results discussion conclusion acknowledgements references about the author(s) mfungana m. shikwambana department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa jean v. fourie department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa citation shikwambana, m.m. & fourie, j.v., 2023, ‘supporting a tsonga learner living with bardet-biedl syndrome, a rare complex disability’, african journal of disability 12(0), a1181. https://doi.org/10.4102/ajod.v12i0.1181 original research supporting a tsonga learner living with bardet-biedl syndrome, a rare complex disability mfungana m. shikwambana, jean v. fourie received: 15 dec. 2022; accepted: 30 june 2023; published: 04 dec. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: bardet-biedl syndrome (bbs) is a rare, systemic, hereditary disorder characterised by obesity, polydactyly, visual and auditory impairment, and cognitive disability. providing quality education in appropriate schools for children who present with such complex chronic conditions is challenging. objectives: this study explored the dimensions of psycho-educational support needs for a child with bbs in south africa to contribute to the improvement of early detection and holistic interventions. method: a descriptive in-depth qualitative case study of gezani, an adolescent tsonga boy diagnosed with bbs, was undertaken. semi-structured interviews were conducted with his parents and teachers to ascertain the boy’s psycho-educational support needs. medical reports provided information on the complexities and prognosis of the syndrome. observations in the classroom corroborated the learner’s symptoms and behaviours. results: thematic content analysis revealed the key areas of support needs. gezani’s cognitive disability required a modified, slow-paced curriculum. his visual impairment required mobility orientation training and learning braille. his emotional needs were supported with psychotherapy to maintain a sense of well-being. medical monitoring was recommended with interventions for walking and managing his diet and weight. speech therapy supported his communication skills. conclusion: learners with multiple disabilities require carefully planned, individualised psycho-educational support programmes addressing their unique needs and delays with targeted remedial interventions in appropriate special needs schools. contribution: this study informs educators about bbs and provides multi-faceted, holistic support. the department of basic education could bring special schools and national policies in tighter alignment for learners presenting with complex disabilities. keywords: adolescent education; bardet-biedl syndrome (bbs); progressive blindness; genetic disorder; polydactyly; psycho-educational support; special needs education; visual impairment. introduction as a school counsellor in a mainstream primary school, the researcher was introduced to gezani when he was referred for a diagnostic psychological assessment. he was in grade six and was 14 years old at the time. he presented with multiple learning difficulties and unusual facial features and was overweight. he had been retained twice and thereafter progressed to higher grades on account of his poor academic performance. during the initial interview with his parents, we learned that gezani had been referred to various specialists since his grade one year. these specialists included an occupational therapist, a speech therapist and a clinical psychologist who had recommended a special needs school. as no conclusive diagnosis was made, he remained in a mainstream school. gezani’s major challenge was his low vision as he struggled to read printed material and to see the chalkboard clearly. the author immediately referred gezani to an optometrist. as his parents could not afford an optometrist, the researcher made an appointment for him at the university of johannesburg optometry department where he was assessed free of charge. during the assessment, different lenses were tried to compensate for his low vision; however, instead of improving his vision, the lenses had the opposite effect, making his vision worse. the optometrists struggled to identify the cause of his visual impairment until one of them observed the scars on gezani’s hands and asked if he had been born with six fingers. gezani and his uncle who had accompanied him confirmed that this was the case. gezani’s polydactyly was the first breakthrough in his diagnosis leading the optometrist to suggest that gezani’s low vision might be related to a rare genetic disorder called bardet-biedl syndrome (bbs). an appointment with a geneticist was made, and a week later, the geneticist assessed him. the geneticist confirmed from clinical observations that gezani had bbs. a blood test thereafter verified the diagnosis of bbs. after gezani was diagnosed with bbs, the authors started researching the condition to learn more about it. the author wanted to know how bbs could be managed and how the support provided at school to gezani could be improved. bardet-biedl syndrome bardet-biedl syndrome is a rare, systemic, autosomal genetic disorder resulting from the disruption of cellular function (ahmad & noman 2022). the syndrome was named after george bardet and arthur biedl who identified bbs in the early 1920s. this genetic condition is caused by anomalies in one of 19 genes that are named sequentially bbs1–bbs19. among black south africans, bbs is caused by the bbs10 gene (fieggen et al. 2016; m’hamdi et al. 2011). bardet-biedl syndrome presents with multiple clinical features that vary among diagnosed individuals. visual impairment is the major symptom in all people with the condition and is because of progressive rod-cone retinal dystrophy in the eye (forsythe & beales 2013). visual impairment ranges from partial visual loss to complete blindness, and eyesight deteriorates with age. cognitive impairment ranges from moderate to severe intellectual disability (castro-sanchez et al. 2015). children with bbs gain weight rapidly in their early childhood and tend to remain overweight during adolescence (pomeroy et al. 2021). individuals with bardet-biedl syndrome are often born with polydactyly (forsythe & gunay-aygun 2020). hypogenitalism is more frequent in men with bbs than in women with bbs (tsegaw & teshome 2021). additional characteristics include impaired speech, dental abnormalities, partial or complete anosmia (sense of smell), and behavioural problems (olson et al. 2019). the worst-case scenario is morbidity and premature mortality, caused by renal failure (haws et al. 2016; tobin & beales 2007). although bbs is incurable and persists as a chronic condition, it is manageable, and most of the clinical features can be minimised with appropriate intervention and treatment focusing on the symptoms presented by individuals (moore et al. 2012). intervention measures given by medical geneticists are variably effective, depending on adherence and compliance. geneticists recommend an annual renal ultrasound and renal function test as preventative measures because affected individuals are at risk of cystic renal dysfunction. annual cholesterol and glucose tests and blood pressure measurement need to be done in view of the obesity associated with bbs. consultation with a dietician is also vital to limit obesity-related complications. annual hearing and eye tests are also needed as about half of the individuals diagnosed with bbs are at risk of developing hearing loss. remedial therapies such as occupational, speech and physiotherapy should also be implemented (tobin & beales 2007). bardet-biedl syndrome and the african culture people living with disabilities, along with their families, often face prejudice as beliefs and attitudes towards people with disabilities vary considerably between different cultures. gezani and his family live in a township that comprises of african people from diverse cultures, which has resulted in him being subjected to the stigma and marginalisation associated with disabilities inherent in many african cultures. parents of children with disabilities often keep them at home as a way of protecting them from such ostracism by the local community (ndlovu 2016). gezani’s parents tried to keep him hidden from the community, and his interaction with other children both at home and at school was limited. some african cultures adhere to the belief that disability is a punishment from angry ancestors (ndlovu 2016). in many african cultures, people with disabilities are excluded from communities, and pressure is placed on families to seek intervention from traditional healers to correct the condition (sait et al. 2011). gezani’s family had consulted traditional tsonga healers in mozambique where rituals were performed to appease the ancestors in the hope that he would be healed of his disabilities. these different challenges contributed to the family suffering emotional and financial stress in addition to them coming to terms with having a child diagnosed with the debilitating consequences of a condition such as bbs. learners with bardet-biedl syndrome in school as south africa is committed to an inclusive education approach, all learners should be given quality education (department of education [doe] 2001). as learners with bbs often manifest multiple impairments, including them in mainstream schools presents a challenge because of their high support needs. however, it is also challenging for special needs education to accommodate their complex needs. in south africa, schools for learners with special educational needs are categorised as those for the visual and hearing impaired, the cognitively impaired and the physically impaired (doe 2001). this categorisation poses complications when a learner manifests with physical, cognitive, visual and auditory impairments. schools for physically impaired learners offer a mainstream curriculum. the provisions and adaptations at such schools are for mobility and access. on the contrary, in schools for the cognitively impaired, the curriculum is modified and adapted to suit the learner’s cognitive pace; however, these schools may not meet the physical and sensory support needs of the learner. a learner with multiple impairments will thus be disadvantaged when placed in any of these schools. previous studies on bbs focused only on the medical aspects, and there is limited research on how to provide psycho-educational support for learners with bbs during their school years. psycho-educational support refers to all the support given to an individual or a group, with the primary goal of sharing information and helping the individual to develop better interpersonal and coping skills (woolhouse, copper & pickard 2013). while researching the disorder, we realised that little research has been done on bbs, its impact on learning and how to support learners with bbs in schools. because of the limited information available about this rare condition, we decided to conduct a case study to determine the psycho-educational needs of children with bbs. aim this study explored the different dimensions of psycho-educational support needed by a learner with bbs, through delving deeper into the difficulties and challenges faced. it is hoped that this information will contribute to the improvement of early detection and interventions for children with bbs and possibly other complex disabilities. research methods and design this case study used a qualitative research approach anchored in an interpretive paradigm which allows an in-depth understanding of a single person, their relationships and their environment (thanh & thanh 2015). this paradigm uses meaning-oriented methodologies such as interviews and observations (creswell & creswell 2022). a qualitative research approach seeks an in-depth, holistic understanding of people’s lived experiences within their natural environment (flick 2018). this approach is flexible and responsive to changes that could occur during the study (rahman 2017). this methodology thus made meaning of the lived experiences of gezani and his family by interacting directly with them and providing a detailed account of their life world. to ensure the trustworthiness of the results of this qualitative study, we provided rich and detailed descriptions of the case (creswell & creswell 2022). data collection and analysis semi-structured interviews were conducted focusing on gezani’s psycho-educational support needs. interviews were held with gezani’s parents, his grade six class teacher and the school principal. an interview was conducted with a district official from the gauteng education department’s support services. when gezani was placed in a school for the visually impaired, his teacher at the new school was interviewed. these interviews were conducted in english which all participants understood, were audio-recorded and transcribed verbatim. various documents were collected including medical reports, a school report and printed emails of the communications between the researcher and the different professionals who were involved in the case. medical reports were obtained from the optometrist, ophthalmologist, geneticist, physiotherapist, clinical psychologist and occupational therapist. data were prepared by organising the interviews and the medical reports chronologically (maguire & delahunt 2017). the content of the data set was coded to extract patterns and themes using the six steps for thematic analysis as described by braun and clarke (2019). ethical considerations as this case study involved a highly vulnerable person, a minor child with a disability, careful planning and consideration was required in safeguarding the rights, dignity and well-being of all the participants. informed, written consent was given by all participants. as a minor, gezani gave assent. a pseudonym was used to protect the identity of the case participant and the family. informed consent forms clearly explained the purpose, process and confidentiality of the study. ethical clearance from the faculty of education research ethics committee at the university of johannesburg was obtained (ethical clearance number: 2016002). approval was granted from the gauteng department of education (doe), as the study was conducted at a government school. results a brief history of gezani’s case as derived from the participants and psychology reports is given first as context for the thematic analysis. thereafter, gezani’s psycho-educational support needs are presented as themes, with some reference to pertinent literature explaining unusual aspects of the raw data. gezani was born with polydactyly and brachydactyly, additional fingers and toes. his birth weight was within the normal range. he was born at full term by normal vaginal delivery, without any complications. he became ill at the age of 1 year and lost weight. he started gaining weight at the age of 3 years, after recovering from illness. he only started walking at the age of 18 months, and his speech development was delayed. his learning difficulties were first identified in grade one when he was referred for a psychological assessment. this assessment recommended he be placed in a special needs school, but instead he repeated grade one. unfortunately, he remained in the mainstream school and later also repeated grade four. after the visual assessment and the bbs diagnosis in grade six, he was allocated a learners with special educational needs (lsen) number for placement at a school for learners with visual impairment in grade seven. six themes were derived from the data analysis and are discussed below. the findings in each theme are supported by direct quotes made by the participants during the interviews and from the reports given by different healthcare professionals. theme 1: cognitive and intellectual support according to his mother, gezani presented with learning difficulties when he started school. his first school report stated: ‘he started grade one this year but is really struggling’. cognitive impairment was confirmed by the psychological assessment done in his grade one year revealing that gezani functioned within a borderline range of intellectual functioning. another intellectual assessment was conducted when he was in grade six which indicated a mild intellectual impairment with an iq score of between 70 and 80. a diagnosis of intellectual disability is consistent with the characteristics of bbs. despite both these psychological reports diagnosing a cognitive impairment, he was not referred to or placed in a school for children with intellectual disabilities. he had challenges expressing himself verbally because of his delayed speech development. grade one assessments cover both oral and writing skills. gezani did poorly in these grade-one assessments as he had difficulties with both receptive and expressive language. his mother reported that he could not speak properly, and she was concerned that he might have hearing problems. these delayed speech difficulties are consistent with bbs symptoms (aravinda & mohitha 2020). gezani’s academic performance continued to deteriorate each year, and he was retained in both the foundation and intermediate phases. the school principal confirmed, ‘this learner will not cope with a normal curriculum’. because of his learning challenges, it was becoming more evident that gezani was not coping at the mainstream school and needed to be placed in a school that would meet his special educational needs. in grade seven, he was placed in a remedial class at a school for the visually impaired where he was taught general skills. the class was small with about 10 learners, which allowed the teacher to give each learner individual support and to monitor their progress more effectively. observations showed that gezani was benefiting from this class, compared to his previous classes where there were 50 learners, and the teachers were unable to give him attention or monitor his progress. children with bbs should be placed in special needs schools so that their cognitive impairment can be addressed effectively through early intervention and special education programmes sooner rather than later. these programmes designed for learners with bbs should be informed by psychological assessment results because children have different learning difficulties and, therefore, have different psycho-educational support needs. theme 2: visual impairment support visual impairment is one of the major features of bbs; therefore, tailored visual support is crucial in addressing individual psycho-educational support needs as the visual challenges differ from one learner to the other. people with bbs often have retinitis pigmentosa, which is a degeneration of the retina, causing blurred vision (okoronkwo 2016). the symptoms usually appear during adolescence or young adulthood. in gezani’s case, the symptoms were noticed in childhood when he started school. the severity of the condition differs from one person to another, and it cannot be treated. some people can manage this condition by using glasses; however, gezani’s condition is so severe that glasses would not help. the mohindra retinoscopy findings reported by the ophthalmologist also diagnosed gezani with bilateral nystagmus, low vision and night blindness. the low vision affects gezani’s reading and writing in class. he has challenges in seeing the written text and writing in his books. he often holds a book upside down without even realising that the text is upside down. he held the book extremely close to his eyes when he was reading and would lean close to the book when he was writing. he would blink often, and his eyes would move rapidly in different directions because of the nystagmus. nystagmus is the involuntary back-and-forth movement of the eyes (lemos & strupp 2022). usually, the rapid eye movement is side to side, but it can also be up and down or circular, as in gezani’s case. the rapid movement happens in both eyes, at either a slower or faster rate. the symptoms of this condition include dizziness, difficulty seeing in the dark, holding the head in a tilted position and sensitivity to light. the optometrist noted that gezani presents with all these symptoms. support for visual impairment should focus on the following areas: physical adjustment, curriculum adjustment, pedagogical practices and community support. seating arrangements for visually impaired learners should be done according to the visual abilities and needs of each learner (habulezi & phasha 2012). short-sighted learners usually sit in the front row, and far-sighted learners sit in the back row of the class. as gezani is short-sighted, he should be seated in the front to have a better view of what is written on the board. gezani should be given mobility orientation so that he can access the school environment with ease. as his vision is deteriorating and he is cognitively impaired, the mobility orientation should be done at regular intervals depending on how long it takes for him to master the layout of the school environment. it was evident from the medical reports that gezani will need intensive visual support: ‘i would recommend liaise with a school for the visually handicapped to assist him with the visual challenges’. his vision will deteriorate with time, resulting in permanent and complete blindness by late adolescence or early adulthood. this anticipated blindness requires gezani to be trained in braille and other functional skills. braille is an effective tool for teaching literacy skills to visually impaired learners, and it serves as a life-long skill (johnstone et al. 2009). however, gezani was in a mainstream school for a long time and was only introduced to braille when he was transferred to a school for the visually impaired in grade seven. considering his age and cognitive impairment, it was going to be difficult for gezani to learn braille at this late stage and he required intense support. gezani required visual support for reading and writing. his reading books were in large print. he was given books with large thick lines for writing neatly and legibly on the page. his teacher gave this advice: ‘… we have a book with big lines … when he writes on that page he was able to write straight.’ (teacher, school for visually impaired, female) ‘and then for mathematics we made the large squares whereby when he writes the numbers he has to put numbers in each and every block until he comes better when it comes to writing.’ (teacher, school for visually impaired, female) ‘enlarged print, he enjoys working with colours as he is not colour blind. in gezani’s case, he has night blindness. we need the enlarged print for him.’ (teacher, school for visually impaired, female) considering his limited vision and difficulties with fine motor skills, gezani was able to colour in drawings with clear bold outlines. assistive learning technology devices can be effective visual supports to address reading and writing difficulties. gezani enjoyed using whatsapp on his cell phone to text friends, family and his teacher. even though he does not say much in his text because of his language barrier, he does have simple and short conversations and uses ‘emojis’ more than words. his teacher said he can benefit from using assistive technology devices: ‘[b]ecause i thought gezani can be able to write maybe simple words and numbers to add numbers and whatever, but i was so surprised that gezani was communicating with me using the cell phone whatsapp.’ (teacher, school for visually impaired, female) his teacher recommended that he learn computer skills ‘because academically he can’t cope with the mainstreams but maybe he can do some computers as time goes on’. as assistive devices could help learners with reading and writing, the occupational therapist noted, ‘this learner will not cope with normal teaching, and must use equipment to enhance his vision such as touch screens and text-to-speech for reading’. (teacher, school for visually impaired, female) with appropriate visual support, gezani can learn basic daily living skills and take part in various school activities. he had shown some improvement since he started at the school for the visually impaired. teachers were doing their best to support him with writing, reading and acquiring functional living skills. theme 3: emotional support the multiple disabilities associated with bbs can be the source of great emotional distress, and thus, counselling support was indicated. the support should seek to address the emotional challenges associated with the stigma of disability, visual impairment, cognitive impairment and obesity. the stigma surrounding disabilities is present in gezani’s community. his mother reported that the family ‘keeps to themselves’ and they are only now beginning to understand this disability as it affected her husband’s mother and gezani’s younger sister as well. gezani’s father is a carrier of the bbs gene but shows no symptoms. gezani is an introverted boy; he does not have any friends and seldom plays with other learners at school. the stigma is present at school as learners often shun learners in remedial classes. the teacher reported: ‘you know sometimes it’s difficult for learners in that class, because they are isolated from the mainstream, so, those who are in the mainstream they don’t usually associate themselves with those remedial ones.’ (teacher, mainstream school, female) his disability also contributes to his isolation. the teacher said, ‘but he just stays seated until i say, gezani, its break time and then he said ok mam and then he went out, he has no friends’. (teacher, mainstream school, female) the teacher described a peer support group of learners at the school for the visually impaired called ‘soul buddies’, who are responsible for making friends with learners who might be isolated, new at the school or having challenges in making new friends. they spend time with these learners during breaks, orientating them about the school. as learners who are partially blind, the ‘soul buddies’ help those who are completely blind as they understand some of the emotions related to the difficulties of being visually impaired. learners with visual impairment usually have emotional challenges that are related to weather changes. dark clouds affect their vision and they are unable to see clearly. when this happens, these learners tend to think that they are losing their vision which leads to heightened anxiety which they are unable to communicate to their friends and their teachers. the principal explained: it’s a matter of mobility, when the weather has changed they sometimes get lost, they feel like they are losing their sight and it affects their behaviour in a way.’ (principal, school for visually impaired, male) gezani feels incompetent and sad as he struggles with his deteriorating sight. emotional challenges are related to the ‘sight loss journey’ as people become more socially withdrawn and isolated (habulezi & phasha 2012). supporting visually impaired learners requires the appreciation of the transitional processes and stages of visual loss deterioration, and therefore, specific counselling was indicated to address the emotional challenges associated with bbs. theme 4: medical support learners with bbs require regular medical check-ups to manage this chronic condition. it was evident from the geneticist report and interview that gezani required regular medical support and assessments to manage his bbs. renal dysfunction is the main cause of death in bbs individuals and can develop at any time. thus, it is crucial that renal functioning is closely monitored, and gezani was advised to undergo annual renal assessments. the geneticist recommended: ‘annual renal ultrasound and renal function tests affected individuals are at risk of cystic renal disease and renal dysfunction. annual cholesterol and glucose tests as well as blood pressure measurement in view of the obesity associated with the condition. annual hearing test50% risk for hearing loss.’ (geneticist, medical report, female) the purpose of these assessments is to detect renal diseases at an early stage so that patients can start treatment immediately. the treatment is meant to combat secondary diseases linked to renal dysfunction, which can be life-threatening. theme 5: physical support learners with bbs often present with polydactyly. the most common intervention for polydactyly is the surgical removal of the extra digits on the hands and the feet. most children have their extra digits removed within 2 years after birth (welbourn et al. 2018). this was the case with gezani as reported by the geneticist, ‘brachydactyly, as well as scars from the removal of postaxial additional digits’. his geneticist further stated, ‘the developmental delay is global, it involves gross motor and fine motor abilities’ (geneticist, medical report). gezani’s physical disabilities combined with his visual impairment impacted negatively on his mobility, resulting in poor motor co-ordination, execution and balance, and clumsy and slow movements. he was always accompanied to school by his uncle or mother, who held his hand to ensure that he did not bump into other people or obstacles in his way. he needed physical support regarding his mobility both at school and at home as his visual condition continues to deteriorate. gezani often complained about pain and discomfort in his feet related to the structure of his feet and the shape of the school shoes. he was more comfortable wearing sneakers as they are more flexible than school shoes and aid his balance and mobility. because of bbs, gezani is overweight which further impacts his mobility and other daily activities causing him to tire easily. the occupational therapist reported that gezani was obese, weighing 78 kg when he was 14 years old. the normal weight for 14-year-old boys ranges between 47 kg and 51 kg (forsythe & beales 2013). gezani was almost double the average weight for his age, and he was unable to take part in school sports. the occupational therapist reported: ‘on assessment, he has poor motor co-ordination, execution and balance, all movements are clumsy and slowed … he is unable to balance on one leg, hop, and skip and jump.’ (occupational therapist, medical report, female) she recommended that a dietician be consulted to assist with a diet for controlling gezani’s weight. theme 6: speech support gezani has challenges with communication, as he battles with comprehending language and expressing himself verbally. the occupational therapist reported ‘his speech is slurred and uncoordinated’. during their consultation with a clinical psychologist, his mother reported that gezani could not speak to the doctor. when the authors first met gezani, we also thought that he was unable to speak. he takes time to respond when spoken to and his voice is unclear and soft. it is challenging to hold long conversations with him because he responds with one-word answers. his teachers raised concerns about his communication challenges as this presented a barrier whenever there was something he needed to tell a teacher. for example, if he was being bullied, it was a challenge for him to report the bullying. he struggled with pronouncing the names of the bullies and was unable to explain the incident clearly to the teacher. his mother used to report the bullying on his behalf. his mother has a way of understanding what he is trying to communicate and is the only person with whom he is able to communicate effectively. both gezani’s parents are xitsonga speaking but they communicate with gezani in isizulu, which means he is not able to speak his mother tongue, xitsonga. a person’s home language is not necessarily their dominant one but is rather the language that they use the most. therefore, isizulu can be regarded as his main language, as it is the language that he is exposed to the most and the only language with which he communicates. the reason his parents communicate with him in isizulu is that they live in a community that is predominately isizulu speaking. gezani attended an isizulu kindergarten and takes isizulu as his first language at school. his mother reported that this has presented a challenge when it comes to helping him with homework and language activities. even though his parents can speak isizulu, they are not proficient in reading and writing in isizulu. gezani’s communication challenges increased when he had to learn english as an additional language at school because he had not yet fully mastered isizulu as a home language. one’s home language is crucial in learning a second language (liando & tatipang 2022). it is much easier for children to learn a second language after mastering their home language. the home language is the basis for a child to learn a second language because he can refer to his home language when learning a new concept in the second language. it is recommended that learners with speech impairments be referred to an audiologist, who will ascertain whether hearing loss might be a contributing factor. if there are difficulties with hearing, the auditory challenges should be addressed before any speech remediation can take place. it was recommended that speech therapy should be offered at the first signs of speech delays among children with bbs. despite presenting with delayed speech, gezani was only referred to an audiologist and speech therapist when he started school in grade one, but unfortunately, he never received any speech therapy. although speech therapy is more effective when given at an early age (aravinda & mohitha 2020), late intervention could still be helpful in gezani’s case. discussion inclusive education is the practice by which the needs of diverse learners are successfully and adequately met (robinson & rusznyak 2020). implementing quality inclusive education in south africa has many challenges for children with complex disabilities, as special schools offer different curriculums and cater for different disabilities in their different categories. this categorisation is problematic for learners such as gezani who presented with physical, visual and cognitive impairments. furthermore, the curriculum offered at schools for children with physical disabilities follows the mainstream curriculum policy statement. the adaptations that are made at such schools are generally for mobility and accessing the school and learning resources only. on the contrary, in schools for the cognitively impaired, the curriculum is substantially modified and adapted. a learner who is both physically and cognitively challenged will therefore be disadvantaged when placed in either school. learners with rare genetic disorders are likely to present with both cognitive and physical impairments and accommodating them in special schools is difficult. bardet-biedl syndrome is one such rare genetic disorder, and learners with bbs are less likely to have all their educational needs met as they present with multiple cognitive and physical problems. all these challenges require intensive support from various educational and medical professionals working in close multi-disciplinary teams and providing varied learning support strategies in the classroom (yoro, fourie & van der merwe 2020). with appropriate educational support, children with bbs can grow into adulthood having attained independent living skills (forsythe & gunay-aygun 2020). gezani presented with multiple psycho-educational support needs in six domains, namely, cognitive, visual, emotional, medical, physical and speech. these support needs include remedial classes, counselling, learning assistive technologies, braille training, buddies, regular medical check-ups, mobility orientation, regular physical exercise, dietary advice and speech therapy. gezani’s support needs are based on his genetic condition, as well as cultural and societal beliefs and stereotypes. as gezani and his family have been marginalised by the community where they live, which has had an influence on how he has been raised, family therapy is advised. to fully conceptualise gezani’s psycho-educational support needs and those of other learners with bbs, multiple factors are considered related to the family background, the community, the school environment and educational resources as they all affect the individual and the psycho-educational support needs associated with bbs. even though his referral and placement at the school for the visually impaired were delayed for so many years, gezani has shown steady improvement. the study suggests that had he been diagnosed sooner and been placed in an appropriate school from grade one, his learning difficulties would have been addressed earlier. the failure of the educational system to identify and provide appropriate support for gezani highlights inadequacies in the implementation of educational white paper 6 (doe 2001) towards an inclusive quality education system. in summary, gezani’s cognitive and intellectual challenges are addressed with an individualised support programme providing a modified and adapted curriculum. his visual impairment is managed with support at the school for visually impaired where he is taught orientation skills and reading in braille that will help him when he becomes completely blind in early adulthood. counselling therapy support assists gezani and his family in dealing with emotional stresses and community stigma associated with bbs. medical interventions related to the management of bbs’s potential renal complications should be scheduled annually. support that will help gezani with walking, balance and managing his weight is required from the occupational therapist and dietician. speech therapy support assists him with communication skills and language pronunciation. the rarity and complexity of bbs had an enormous impact on how this study was conducted. there was limited information about this genetic condition in the south african and global literature. gezani is the first and only learner who has bbs at his school for the visually impaired. teachers and officials in the gauteng education department had never had a reported case of a learner with bbs and were therefore unable to provide the necessary psycho-educational support. the participants who were interviewed in this study had no prior knowledge about bbs. the teachers at his previous mainstream school and current school for the visually impaired and the officials at the district and head office in the gauteng department of education (gde) had the opportunity to learn about bbs and how to support learners with bbs through participating in this study. the authors were personally involved in managing the case. the first author taught gezani at his school and witnessed all his challenges in the classroom. the authors referred him to an optometrist with the permission of his parents and accompanied him and his uncle when he went for his visual assessment. they booked his genetic assessment appointment and accompanied him on the day of the assessment. his case was managed over a long period of time which gave the authors unique insights into the challenges faced by a person with a complex disability. at times, the authors visited him at the school for the visually impaired to see how he was coping there. the first author developed a close working relationship with his family, who were always available to discuss his progress. the authors knew that the transition from a mainstream school to a school for the visually impaired was a life-changing opportunity for gezani to access appropriate psycho-educational support. a limitation of this study is that it was a single-case study, and findings from this study might not be applicable to a larger group. the challenges that gezani faces at school might differ from the challenges of another adolescent diagnosed with bbs, because of different family backgrounds, developmental milestones and life experiences. the findings from this case study could, however, be considered when giving psycho-educational support to children diagnosed with bbs or similar complex disabilities. conclusion this study explored the psycho-educational support needs of gezani, an adolescent learner diagnosed with bbs who presents with multiple disabilities. gezani experienced learning challenges from birth and struggled to cope with the mainstream curriculum at his previous school. gezani is now in a school for the visually impaired, where his visual needs and learning difficulties are addressed. teachers at the school for the visually impaired are learning about bbs and how to give gezani appropriate psycho-educational support. gezani is the first learner at the school to present with this rare genetic disorder; therefore, there is currently insufficient knowledge about bbs and support for gezani at the school. the findings from this study, however, will inform the teachers about bbs and the psycho-educational support appropriate for gezani. findings from this study can be used by the south african department of basic education to improve its policies regarding learners with special educational needs. the rarity of bbs meant that teachers in this district were unaware that the condition existed, and therefore, they were unaware of the psycho-educational support needs of learners who are diagnosed with the condition. this study could help the department of basic education to broaden its policy regarding inclusive education and special schools to include information and resources that will enable them to support learners with rare genetic conditions. this case highlights multi-faceted interventions in supporting children with multiple disabilities. the findings show the challenges that other children with similar conditions may face. this case intervention was beneficial for gezani, his family and immediate community, allowing them to understand this condition. the study could be beneficial for other adolescents diagnosed with complex visual, intellectual and physical disabilities, to receive quality psycho-educational support. acknowledgements the authors would like to acknowledge the adolescent named ‘gezani’, his family and his teachers for sharing their personal story in this study. some of the work in this article stems from mfungana m. shikwambana’s thesis, entitled ‘psycho-educational support for an adolescent diagnosed with bardet-biedl syndrome’, presented in partial fulfilment for the degree of master in educational psychology at the university of johannesburg in 2018. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.s. conducted the formal analysis and investigation for this study and wrote the original draft of the article. j.v.f. conceptualised the study, sourced funding, acted as supervisor, and revised and edited the final article. funding information this study was supported by a grant allocated as part of the teaching and learning development capacity improvement programme (tldcip), a partnership between the south african department of higher education and training and the european union. data availability the master’s dissertation for this study includes samples of raw data that are available at https://hdl.handle.net/10210/402285. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or 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benjamin, n.a. & jelsma, j., 2014, ‘an innovative approach to reducing pain in patients with peripheral neuropathy related to hiv: a single case study’, african journal of disability 3(1), art. #118, 4 pages. http://dx.doi.org/10.4102/ ajod.v3i1.118 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. an innovative approach to reducing pain in patients with peripheral neuropathy related to hiv: a single case study in this case study... open access • abstract • introduction • medical history    • social history and environmental factors    • subjective examination    • objective examination    • intervention       • treatment session 1: 14 november 2012       • treatment session 2: 15 november 2012       • treatment session 3: 18 november 2012       • treatment session 4: 11 december 2012       • treatment session 5: 8 january 2013       • outpatient management • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ introduction: peripheral neuropathy (pn) is the most common neurological condition seen in people living with human immunodeficiency virus (hiv) and has been estimated to be present in up to 30% of people with aids. prevalence may be increasing as it appears to be related to the use of antiretroviral therapy in many cases, particularly medication containing stavudine. it is often characterised by burning and numbness in the feet. it can interfere severely with function and sufferers resort to a large number of strategies in an attempt to reduce pain. case presentation: a 50-year-old man presented with severe pn and showed symptoms of extreme weakness and sensitivity of both lower limbs. his symptoms gradually worsened over a period of 18 months to such an extent that he was unable to walk. medication had no effect on his pain or related symptoms. the authors tested the use of a vibromat clinical vibrator to treat his pn symptoms. the patient was treated using the same modality for five evenly spaced (monthly) sessions. outcome: the patient showed marked improvement in pain, numbness and pins and needles symptoms after the first session. he was able to walk a short distance with assistance. treatment was continued and after the third session he was able to walk unaided. symptom relief was maintained for 4 months. conclusion: this is the first case demonstrating the use of the vibromat in successfully treating the signs and symptoms of pn. this is important for clinicians who manage patients with hiv-related pn and pain. introduction top ↑ peripheral neuropathy (pn) is the most common neurological condition seen in people living with human immunodeficiency virus (hiv) (kamerman, wadley & cherry 2012; nicholas, kemppainen & canaval 2007) and has been estimated to be present in up to 30% of people with aids (griswold et al. 2005). prevalence was even higher (57%) in a study conducted by wadley et al. (2011). prevalence may be increasing as it appears to be related to the use of antiretroviral therapy in many cases, particularly medication containing stavudine (oshinaike et al. 2012; wadley et al. 2011). it is often characterised by burning and numbness in the feet (davis et al. 2004). it can interfere severely with function and sufferers resort to a large number of strategies in an attempt to reduce pain (griswold et al. 2005). limited evidence exists for the effective pharmacological management of the condition. a systematic review of pharmacological treatment of painful hiv-associated sensory neuropathy (hiv-sn) concluded that ‘[e]valuation of novel management strategies for painful hiv-sn is urgently needed’ (phillips et al. 2010:e14433; see also chetty et al. 2012). chetty et al. (2012) revisited this concept and provided pharmacological guidelines based on existing literature. kamerman and mitchell (2011) estimate that at least 10 million hiv-positive individuals live with significant pain because of their disease. this is a rather large population that is being underserviced as a result of a lack of effective management strategies, including sufficient evidence for physiotherapy intervention. physiotherapy management, consisting of joint mobilisation, massage and the use of micro-current therapy, has been reported to be effective in two patients; however, the impact of therapy was only apparent after several months (gale 2003). nicholas et al. (2007) reported that one of the coping strategies of patients with pn was rubbing the feet with cream, which had a 6.3/10 reported effectiveness (nicholas et al. 2007). both gale (2003) and nicholas et al. (2007) report on the effectiveness of intervention which included tactile stimulation, albeit not in experimental trials. the current authors hypothesised that the use of vibration, which provides a strong sensory stimulus, might reduce the pain and reduced sensation common in patients with pn. the use of vibration to reduce pain has been suggested in dental patients and rests on a basic application of the gate control theory of pain (shahidi bonjar 2011). this theory proposes that stimulation of small c fibres activates excitatory systems that excite pain output cells. these cells’ activity is controlled by the balance of proprioceptive, large fibre, a beta mediated inhibitions (dickenson 2002), which implies that proprioceptive input can assist in preventing the transmission of noxious stimuli to the central nervous system. a similar case study was conducted by hong (2011), where whole-body vibration was used to manage diabetes-related neuropathic pain. following an eight-week intervention of whole-body vibration, the patient’s pain level, balance and gait patterns were significantly improved. as this is a case study and the results were somewhat unexpected, we had not anticipated submitting for publication and ethical approval could not be granted retrospectively. however, consent to publish this article was obtained from the subject, provided that no identifying details were disclosed. medical history top ↑ mr x was a 50-year-old male who was first seen by the authors on 14 november 2012. he had been diagnosed with pulmonary tuberculosis (tb) and hiv with severe pn in may 2011, 5.5 months previously. he was commenced on haart – d4t, 3tc and efv on 05 july 2011. he was admitted to mahatma ghandi memorial hospital on 12 november 2012 for extreme weakness and sensitivity of both lower limbs. the patient reported that he had not been walking for over a year and was dependent on a wheelchair for mobility as well as caregivers for transfers. he was referred to physiotherapy by the attending doctor to assist with mobilising the patient out of bed and pain management. he was receiving medication as listed in table 1.he had undergone lumbar spine x-rays to exclude tb spine and his vitamin b levels were within the normal range. table 1: in-hospital medication regime. social history and environmental factors mr x was married and unemployed and received a social grant. he felt very depressed and demotivated because of his limitations and the severe pain.he lived in a five-room house, with an outside toilet which he was unable to access because of his disability. he had electricity but no running water in his home. subjective examination mr x arrived at the physiotherapy department in a wheelchair. he was wearing his slippers with doubled up socks as he found it too painful to touch the normal lining of the slippers. he was unable to transfer independently from the chair to the examination plinth and required the assistance of two helpers.he reported severe pain in the lower limbs and that he fatigued easily. he required assistance with grooming but was independent with regard to other self-care activities. he was unable to sleep because of the pain and was unable to cover his legs with a sheet or blanket for warmth because of the hypersensitivity of his feet. his desired outcome was that he would be pain free so that he could walk again and regain his independence, specifically in terms of getting to the toilet without assistance and attending church services. objective examination he had intact biceps and triceps reflexes in the upper limb. it was not possible to test the knee and ankle jerks as a result of the presence of severe pain. he exhibited severe hypersensitivity and allodynia within the l4–s1 dermatomes. he was unable to tolerate any form of tactile stimulation, light touch, pin-prick or temperature testing and found even the touch of cotton wool unbearable. he also reported a sudden shooting pain on unexpected touch or movement. he rated his pain as 10/10 on the pain visual analogue scale (vas).he was generally weak (grade 3–4 muscle strength on the oxford scale of muscle strength [porter 2013]) which was likely a result of disuse of his arms and lower limbs. he had full range of movement in the upper limbs and at the hip and knee. his feet were discoloured and he had dry, scaling skin on his feet, evidence that he had not taken weight through his feet for a while. he had hammer toes which indicated paralysis of the intrinsic muscles of the foot. he was unable to do any active dorsi-flexion and could only plantar flex up to 10 as a result of pain and a degree of swelling around his ankles. the muscle strength of his ankle muscles was grade 2 on the oxford scale, which by definition meant that he was unable to move his ankles through full range against gravity. he had been receiving physiotherapy treatment, which consisted of light tactile stimulation (using cotton wool), for the previous two days in an attempt to desensitise the hyperalgesic areas. he had also received treatment to strengthen his upper limbs and to teach him how to manage his wheelchair. intervention a vibromat clinical vibrator was utilised for intervention. this consists of a vibrating pad of approximately 10 cm x 12 cm, driven by a small motor. it is standard equipment in most physiotherapy departments as it is generally used to assist in dislodging chest secretions by vibrating over the chest wall. treatment session 1: 14 november 2012 we treated mr x supported in supine. we covered the pad with a sterile glove and we requested mr x to touch the vibromat, which was set at a low frequency, in order to get used to the sensation. we started vibrating proximal and lateral to the hyperaesthetic area by placing the vibromat next to his calf and asked him to move his calf against the pad. he was thus in control of the amount of stimulation he received. he found it painful and was hesitant to push against the pad at first. however, within a very short space of time he was able to push quite hard and was then willing to move his leg so that the pad approached his ankle and finally his foot. in the beginning he could tolerate only light touch but within approximately 60 seconds he was able to apply quite firm pressure against the pad with his ankle and ultimately the sole of his foot. the treatment lasted for approximately 5 minutes and was then repeated on the other leg. he immediately reported a decrease in pain and he was also able to move his ankles more freely and with minimal pain. we then assisted him into standing, and for the first time in 6 or more months, he was able to walk with minimal support. he walked the length of the ward and his response was ‘thank god, thank god!’ the response was of such magnitude and so immediate we were concerned that there might be a severe exacerbation in pain and we counselled him in this regard and warned him against doing too much. treatment session 2: 15 november 2012 the patient reported no increase in pain; on the contrary, it was much improved to 7/10 on the vas, but had increased since the cessation of treatment the previous day. his ward mates reported that he had been walking with the assistance of other patients. the swelling in his feet had subsided completely. he then applied considerably more pressure, paying attention to the area at the ball of his left foot, which was more painful than his right. he reported that the pain had decreased to 5/10 on the vas. he reported that he had had pins and needles prior to treatment but this subsided completely after the vibration. post-treatment he walked with more ease, at a faster pace and with minimal assistance and was able to walk to the bathroom on the ward. treatment session 3: 18 november 2012 improvement continued and vibration treatment was given as before. he reported a 4–5/10 pain intensity on the vas. he was discharged from hospital with medication (see table 2) and was given mobility and strengthening exercises to continue at home. table 2: medication issued on discharge from hospital. treatment session 4: 11 december 2012 mr x arrived late for his appointment with the authors and was given regular physiotherapy without vibration, which included upper limb strengthening exercises, cycling for 10 minutes and stair climbing. he coped well and was issued with elbow crutches to aid his balance. treatment session 5: 8 january 2013 mr x walked into the physiotherapy department with his crutches as he no longer felt the need to use his wheelchair and opted to rest if he was tired. on examination the active range of movement in his ankles had improved 10 in all directions (dorsiand plantar-flexion and inversion and eversion) from 7 weeks before. the condition of his skin had also improved. the patient was able to climb the stairs with no walking aid. therapy was continued as before, including the vibration. he was issued with a hand-held commercial massager for use at home. he left the physiotherapy department with his crutches under his left arm and smiled, saying: ‘i might just need them if i get too tired’. outpatient management mr x continues to receive vibration therapy, once a month, on an outpatient basis. he reports that he has maintained his level of mobility and independence. his quality of life in general has improved tremendously and he attributes this positive change directly to the physiotherapy intervention that he has received. conclusion top ↑ a randomised control trial of vibration in patients with hiv and pn is being planned and it is obviously premature to present this short report based on a single case study. however, the results of the intervention were so immediate and resulted in such a large functional change that we decided to share these, in the hope that those who suffer from this severe disabling condition might benefit from a similar intervention in the interim. the findings are also complemented by the case study reported by hong (2011). mr x reported: ‘physiotherapy made a big, big difference in my life and has been the most amazing experience. i was able to enjoy christmas with my family because my appetite is back and i can enjoy the food. i can sleep with my legs covered with a sheet and blanket. even my wife is happy because i can now satisfy her sexually again. i only have minor pains and still get tired.’ the qualitative results of this case study pave the way for more in-depth quantitative research to investigate adequately the mechanisms and effects of local vibration therapy. acknowledgements top ↑ the authors would like to thank mr x for granting us permission (signed consent) to publish his information; ms n for providing some of the baseline assessment data; and hospital management and physiotherapy staff for allowing access to their facilities and equipment as well as granting consent for the publication of this article. competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this article. authors’ contributions n.a.b. (university of the witwatersrand) was responsible for the initial assessment, providing intervention, final write-up and submission of the article. j.j. (university of cape town) was responsible for the initial intervention, initial article preparation and editing of the article. references top ↑ chetty, s., baalbergen, e., bhigjee, a., kamerman, p.r., ouma, j., raath, r. et al., 2012, ‘clinical practice guidelines for management of neuropathic pain: expert panel recommendations for south africa’, south african medical journal 102, 312–325.davis, l., evans, s., fishman, b., haley, a. & spielman, l.a., 2004, ‘predictors of attrition in hiv-positive subjects with peripheral neuropathic pain’, aids care 16(3), 395–402. http://dx.doi.org/10.1080/09540120410001665394 dickenson, a.h., 2002, ‘gate control theory of pain stands the test of time’, british journal of anaesthesia 6, 755–757. http://dx.doi.org/10.1093/bja/88.6.755 gale, j., 2003, ‘physiotherapy intervention in two people with hiv or aids-related peripheral neuropathy’, physiotherapy research international 8(4), 200–209. http://dx.doi.org/10.1002/pri.290 griswold, g.a., evans, s., spielman, l. & fishman, b., 2005, ‘coping strategies of hiv patients with peripheral neuropathy’, aids care 17(6), 711–720. http://dx.doi.org/10.1080/09540120412331336715 hong, j., 2011, ‘whole body vibration therapy for diabetic peripheral neuropathic pain: a case report’, health science journal 1(5), 66–71. kamerman, p.r. & mitchell, d., 2011, ‘current perspectives on hiv-related pain and its management: insights from sub-saharan africa’, future medicine 1(16), 587–596. kamerman, p.r., wadley a.l. & cherry c.l., 2012, ‘hiv-associated sensory neuropathy: risk factors and genetics’, current pain and headache reports 16, 226–236. http://dx.doi.org/10.1007/s11916-012-0257-z nicholas, p., kemppainen, j. & canaval, g., 2007, ‘symptom management and self-care for peripheral neuropathy in hiv/aids’, aids care 19(2), 179–189. http://dx.doi.org/10.1080/09540120600971083 oshinaike, o., akinbami, a., ojo, o., ogbera, a., okubadejo, n. & ojini, f., 2012, ‘influence of age and neurotoxic haart use on frequency of hiv sensory neuropathy’, aids research and treatment 2012, 961510. http://dx.doi.org/10.1155/2012/961510 phillips, t.j.c., cherry, c.l., cox, s., marshall, s.j. & rice, a.s.c., 2010, ‘pharmacological treatment of painful hiv-associated sensory neuropathy: a systematic review and meta-analysis of randomised controlled trials’, plos one, public library of science 5(12), e14433. porter, s., 2013, tidy’s physiotherapy, churchill livingstone, edinburgh. shahidi bonjar, a.h., 2011, ‘syringe micro vibrator (smv), a new device being introduced in dentistry to alleviate pain and anxiety of intraoral injections, and a comparative study with a similar device’, annals of surgical innovation and research 5(1), 1. http://dx.doi.org/10.1186/1750-1164-5-1 wadley, a.l., cherry, c.l., price, p. & kamerman, p.r., 2011, ‘hiv neuropathy risk factors and symptom characterization in stavudine-exposed south africans’, journal of pain and symptom management 41(4), 700–706. http://dx.doi.org/10.1016/j.jpainsymman.2010.07.006 introduction autoethnography ubuntu as a guiding force – fertile ground for growth the kitchen table in lieu of a conclusion, thank you, leslie acknowledgements references about the author(s) nokulunga shabalala department of psychology, faculty of humanities, university of johannesburg, johannesburg, south africa citation shabalala, n., 2025, ‘supervision at the kitchen table: supervisory alliance and implications for scholar development’, african journal of disability 14(0), a1688. https://doi.org/10.4102/ajod.v14i0.1688 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper supervision at the kitchen table: supervisory alliance and implications for scholar development nokulunga shabalala received: 17 feb. 2025; accepted: 15 may 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction i met professor leslie swartz during my interview at stellenbosch for the clinical and community counselling programme in 2011. i was calm going into selection week because i believed that my chances of getting into a master’s programme at 21 years of age and interviewing while still busy with my honours degree were very slim. this belief was compounded by thinking stellenbosch would likely not take black applicants. at the time, i was ambivalent about going straight into my master’s, but i had strong suggestions from my family to try. i sat nervously across from prof. swartz as he reviewed my transcript, and he said something to the effect of ‘your marks are really good – i see a few distinctions over the years, but i see you failed research in first year; what happened?’. this forever-stamped ‘fail’ would, in my mind, follow me and threaten my chances beyond that selection week. i remember looking away in embarrassment and thought, ‘oh well, might as well tell the truth’, and i said something like, ‘i was at a photoshoot and did not know it would take all day, so i spotted, and the paper was pure stats, and i didn’t cover that in my spotting’. we laughed and moved on. later that year, he agreed to supervise my master’s minor dissertation, and three years after that, we chose each other for my doctoral journey. when his name comes up, i often say i would not be where i am without his ability to see beyond scores and political tasks of ‘who is going to supervise the black kid?’. i say that last part in a crass way. however, i do wonder how much of a conversation it was that someone would have to take me on after they all deliberated about my readiness for the clinical and community counselling programme. it seemed that the perception of how much additional support i might require was influenced by the fact that i was the only black student and possibly not the strongest in research. i also comment on the deliberation over supervision because i now sit in the position of deliberating over students’ readiness, where some of us often have to fight for some candidates and make commitments to supervise them the following year. i do not know what the panel’s concerns were about me almost thirteen years ago, but as a panel member now, i often wonder if they debated my marks, my age or that i was the only black person coming into the programme. what i know is that i had prof. swartz as my research supervisor, who later became the sponsor who would mention my name in rooms without me being there – a supervisor turned sponsor who would later play a significant role in my career. using an autoethnographic approach, i attempt to make meaning of my supervisory experience during my master’s and doctoral studies and the implications for my journey as a supervisor. i also discuss ubuntu as a guiding force and argue that prof. swartz’s ubuntu and his willingness to share created the supervisory alliance that made for a successful research journey as a student. i refer to prof. swartz as leslie for the rest of the community paper. autoethnography autoethnography brings to the fore the complicated and dialectical nature of lived experiences (eds. boylorn & orbe 2014; parker 2014). i have written elsewhere (shabalala 2022) about how offering my life in this way exposes me and my experience to be scrutinised and criticised. leslie introduced me to autoethnography during my master’s minor dissertation. one of the things he told me when i was writing my first article for publication was that i write best from the heart. i have had to hold on to that sentiment and not the reviewers who stated that my work was not scholarly enough. the comment from leslie was helpful because writing my story as i continue to navigate the work world and academia has been liberating and has given me room to speak about work and its emotional impact on me. in this way, autoethnography has been an emancipating form of inquiry for me, where one is free to voice what may have been deemed unsayable (shabalala 2022). it also allows for an interpretation of experience that could be applied to a particular group of people (eds. boylorn & orb 2014; shabalala 2022). autoethnography, for me, much like carolyn ellis’ account (jones et al. 2016), feels like a pumping of humanness (ramose 2015) to doing qualitative research, where the use of emotion, an evocative voice and experience are seen as resources (jones et al. 2016). autoethnographic work recognises that knowledge is embodied. stacy holman jones notes, ‘much of the work focuses on telling stories that clearly locate the personal in the field, in the writing, and in the political contexts of research’ (jones et al. 2016:20). stacy holman jones (jones et al. 2016) further describes this methodology as a way to research and highlight how text operates to write us in and out of being. ubuntu as a guiding force – fertile ground for growth ubuntu philosophy in higher education is something that i have been interested in recently and have tried to engage with in some of my work. in my attempt to write about it and explain my interaction with it, i found it necessary to establish a definition. while reading some definitions, i have struggled with how ubuntu can be meaningfully captured or translated into english. in my language, isizulu, it is put simply, and we all (indigenous african people) seem to understand it inherently and in a deep sense, almost as though we were all breastfed by the same mother. here are two definitions that have resonated. firstly, ramose (2015) defines ubuntu as a process of humanness where one has to affirm one’s humanity by recognising others’ humanity. he argues that humanness encompasses being, becoming, openness and ceaseless unfolding (ramose 2015). ramose (2015) further argues that through this process, we have no option but to be humane, respectful and polite towards one another. this is where our ethical compass is established: by doing and being in relation to others (ramose 2015). secondly, desmond tutu offers a related definition in 1999, as cited by waghid (2020): ubuntu speaks to the very essence of being human. when you want to praise someone, we say, ‘yu, unobuntu;’ [they have] ubuntu. this means they are generous, hospitable, friendly, caring, and compassionate. they share what they have. it also means that my humanity is caught up, is inextricably bound up, in theirs… umuntu ngumuntu ngabantu. i am human because i belong, i participate, and i share. a person with ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good; for [they have] self-assurance that comes with knowing that [they] belong in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed, or treated as if they were less than who they are. (pp. 300–301) sharing, participation and belonging are the words that constitute ubuntu according to desmond tutu’s definition above (waghid 2020), which is also central to the concept of humanness, as highlighted by ramose (2015). ubuntu, a concept that ought to be as simple as being, is seemingly one that often alludes us in society in general, given the state of the world at the moment, and in higher education in particular. higher education has a cold culture of surveillance and competition, with ‘tenacious, unforgiving gatekeepers’ (maistry 2017:128). therefore, leslie’s openness to sharing is quite notable and worth paying attention to. i want to discuss the idea of sharing and availability as fundamentals of ubuntu by introducing the kitchen table. i found it very odd the first time leslie suggested we meet at his house for my phd supervision session. i asked no questions and drove to his house, which was quite close to where i stayed in cape town. when we got there, someone was leaving. they, too, had a meeting there. i went inside. leslie mindfully asked if i was fine with dogs and invited me into the kitchen, where we would have our supervision meeting. one winter’s day, as i walked into the kitchen, the coffee plunger was being filled, some eats were on the table, and leslie was with several people who were all looking serious with their faces focused on their laptop screens. it looked like an imbizo (a gathering to share knowledge) was underway. it was a group of black doctors who had been discussing some research. leslie introduced me and quickly told me i had two projects to choose from for my phd, but he had a feeling about which one i would choose. i listened as they spoke about the harambee organisation – a group of black medical specialists investigating the racialised experiences of medical trainees in the western cape – and their research. i was invited to sit at this table as knowledge and coffee were shared. they spoke of their experiences, and i shared mine about clinical training. i watched in awe as they spoke about their contributions to the project – from the complicated statistics i will not pretend to remember to the data they had gathered. i was convinced on the spot that that was where i belonged, and suddenly, an opportunity and a space for me to become were offered. within that space, my professional identity was born, co-belonging with people who shared a common goal of resolving social malaise (waghid 2020), one that continues to contribute to my career as an academic and clinician to date. before my research project started, an invitation to the table finally made me feel a little more at home in higher education, unlike my previous experiences (shabalala 2018). growing up, some of my fondest memories involved the kitchen – where the grannies would sit for hours gossiping and speaking in code, thinking we, as the children, would not notice the conversations. it is where recipes were passed down, and i was taught how to cook. we would disappear into it when the adults were having a ‘serious talk.’ the kitchen holds so much meaning for me. i have never asked why he held meetings at his house and at the kitchen table. i have also wondered how his wife felt as we all walked in and out of her house, but the kitchen – him sharing his kitchen, sharing what i understand to be an intimate space – humanised him. he became my jewish mother, who was interested in my process and ensured that i actively participated instead of being a passive higher education consumer (shabalala & mapaling 2024). i was fed, literally and figuratively, and this fostered a sense of citizenship in higher education. the concept of mothering is an important notion in psychodynamic theory, object relations in particular. there is much emphasis on the early relationship between an infant and its mother and how this early relationship creates a foundation for who an individual becomes. i do not bring this conversation on object relations to liken leslie’s interactions with his students and collaborators to kin, where some would erroneously assume that one displays ubuntu because of familial kinship (waghid 2020). waghid (2020:301) argues that one has to show a willingness to share and be open and available to others. thus, it is a function of autonomy; after all, ‘what is there to share if humans do not have the autonomy to do so?’. i discuss mothering, the intimacy that the kitchen brings, and the imbizo to highlight how research has not just been research and how it feels to me like leslie was not just doing his job. he was in communion with us because he wanted to be. moreover, because he has been, we are. the kitchen table the jewish mother: supervisory alliance there is pressure in higher education to move enrolled students along and to enrol as many new master’s and doctoral students as possible (maistry 2017; van rensburg, mayers & roets 2016; wood & louw 2018). supervision in research then encompasses doing enough to ensure that the student completes their research within the minimum required time (wood & louw 2018). this often means that the focus, especially at the master’s level, is less on ensuring that students master research conceptually, preparing them for their doctoral studies and more on throughput targets (maistry 2017; wood & louw 2018). this issue is especially pronounced in professional programmes, where there is room for a minor dissertation, and most of the time is spent on coursework material and work-integrated learning (maistry 2017). wood and louw (2018) argue that the point of research supervision should be to develop students to be confident in their ideas and opinions, to be critical and to be open to others’ opinions and critiques. wood and louw (2018) argue for a supervision process that encourages the value of collaborative and reflective work. the reality, however, is that within the performative era of higher education, supervisors tend to only function as technicians, divorcing themselves from embodying agendas that empower students and those that are for the greater good of society. this was not the case at this kitchen table. there was a unique balance between leslie being available and responsive to my needs as a student (sometimes on a practical level, like paying my registration fees out of his research funds, feeding me soup and feeding my emotions) and allowing healthy independence by taking a step back and affirming me as knowing. the concept of mothering also allows me to speak to power and how that functioned in our relationship. i have given an example above about how opportunities were offered to me before embarking on my doctoral studies, but i want to take us back to my master’s. for my master’s, there were times when leslie had to be more managerial and didactic, as more teaching and oversight were necessary. oparinde (2021) highlights that the general concept of supervision encompasses management, oversight and direction. my master’s research was about my sister’s training to become a traditional healer contrasted with my training to become a psychologist. while leslie held research and writing expertise, he made room for what he did not know and positioned me as knowing. he always tried to instil the politics of voice in me – to find my voice and bring it forward in a way that felt authentic to me and recognised it as valid and scholarly. this is particularly important because african ways of knowing and being have long been believed to exist only in narrative form and consequently contested as knowledge (waghid 2020). therefore, discussing my experiences as a black woman and discussing them in scholarship has been a liberating and propelling force in my career. so, this table, the supervision space, was not contentious. some may imagine a table and a white older man in a position of power and immediately think of biko’s (woods 1991) words: we are aware that a white man is sitting at our table. we know he has no right to be there; we want to remove him from our table, strip the table of all the trappings put on it by him, decorate it in true african style, settle down and then ask him to join us on our terms if he wishes. (p. 49) leslie embodied ubuntu, and because he did, i could participate meaningfully in research and scholarship. i also want to argue that there was a humanness in him that knew when i (as i can only speak from my experience) entered that space, the table was not his, but he would join me. my research was deeply personal and was concerned with blackness. as such, it warranted a recognition that the table would have to be arranged through my imagination and experience. for my doctoral journey, supervision was taking place against the backdrop of the fallist movement (the rhodes must fall and fees must fall movements) happening at the time. it was a chilling realisation that, while i was more freely accessing my education, some were fighting for theirs. dladla (2020), in the preface of his book here is a table, discusses that while some of us are invited to sit at the table – referring to white structures – some people are left outside the house and nowhere near the kitchen table. he further argues that the fallist movements awakened african people, wisening them up to the table not being arranged in their style (dladla 2020). i have a different story, but it is not lost on me that some supervisors may not use their power to emancipate their students. the craft of research supervision my supervision with leslie also involved constant negotiation for my master’s and phd. for my master’s, we had just sent my proposal in for internal review, and i remember three distinct comments. the first was questioning the use of autoethnography, the second was whether the topic was not too big for a minor dissertation, and the third was whether we should shift the focus to ‘sisters’. leslie guided me through responding to the two former comments as they spoke more about the technical aspects of the work. for the latter, he asked me to decide what my focus was, speaking to the conceptual component of the work. i cannot remember if i immediately felt empowered when i was given a choice – a clinical master’s programme is overwhelming; knowing myself, i probably just wanted to be told what to do. memory sorting aside, i decided that the focus was more on indigenous knowledge systems and when they come into contact with western ways of knowing and what is privileged. while there are many painful things about my master’s (see shabalala 2018), this was not one of them. i am grateful that my supervisory relationship with leslie was not one of a once-off experience found to be painful for both student and supervisor, as wood and louw (2018:285) put it. haimbodi (2024) argues that the supervisory relationship is fundamental to the success of the learning encounter. this learning encounter is intense and requires a commitment from the supervisor (van rensburg et al. 2016). quality supervision is characterised by supervisor expertise and openness to invest time in their students and guide them through the planning and execution of their projects (heyns et al. 2019). furthermore, supervisors must achieve several outcomes during the supervisory process to facilitate a conceptual understanding of research. these include, but are not limited to, promoting a sense of agency, maintaining the supervisory relationship, fostering student learning and adjusting their pedagogical approaches to meet student competencies (vereijken et al. 2018). in retrospect, i believe i was not as prepared for my phd when i was starting, which may have been attributed to having done a predominantly coursework master’s. my saving grace was that there was continuity from my master’s to my doctorate, with having the same supervisor who would have had insight into my relative strengths and weaknesses. had i not continued with leslie, the assumption would have been that as a student with a master’s degree, i ought to be coming in with the necessary competency to conduct (particularly conceptually) a research project (maistry 2017). thankfully for me, this was not the case. the other benefit was that when we verbally contracted to do a phd together, leslie encouraged me to apply for the graduate school of arts phd programme. this was a structured scholarship programme, where students were funded by the national institute for the humanities and social sciences (nihss). our cohort comprised students from different departments and countries embarking on different kinds of work. i am still in touch with a few people from my cohort, and i am grateful for those connections from which i learned so much. having a cohort also made the doctoral process less isolating. we had compulsory seminars that we had to attend regardless of what our topics were and what methods we were using. for example, we had to learn how to use data analysis software by doing a graded assignment. this ensured that we were exposed to various theoretical and methodological resources. i assume that part of why this was done was to ensure that the responsibility to gain mastery over data analysis, theory and writing was not solely placed on the student to do in their own time to catch up to what was expected in supervision (maistry 2017). for me, finishing both higher degrees in record time was not the measure of successful supervisory processes. the measure has been my willingness to engage in critical reflection, openness to collaboration across institutions and thinking about my research as necessary for practice, teaching, learning and being. it is also evident in how i have adopted a constant learning attitude and humbled myself to what i know and do not know; after all, ‘we do not do phds to show how smart we are’, as leslie would say. lessons learned and ‘becoming’ a research supervisor in 2019, i was finalising my phd and started working full-time in an academic position. i have written a reflective piece elsewhere on my entry into the south african academy (shabalala 2022), so i will not rehash the story here. what i want to pick up here, however, is the experience of trying to finish my phd for examination and being given students to supervise simultaneously. maistry (2017) discusses how complex the south african research supervisory process is. given the pressure of enrolment targets and the subsequent pressure to meet the university’s post-graduate throughput target, there is also an issue of inadequate research supervision capacity (wood & louw 2018). there are not enough supervisors to meet the demand (waghid 2015), and there is also the issue of supervisors, much like me, who fell into supervising master’s and phd students while finishing or having recently finished their doctoral studies (maistry 2017). maistry (2017) further discusses the concept of liminality in higher education – an uncertain period of transition, where emerging academics who are often inexperienced as supervisors are conducting supervision, sometimes while finishing their degrees. as maistry (2017) has argued, the challenge for me is that i hardly had time to metabolise what i had learned to help students get to where they needed to be. i have called my grappling with uncertainty and anxiety in the supervision process as having to learn supervision by osmosis (shabalala 2022). the other problem is that in higher education, globally, clarity on what constitutes research supervision is lacking (almlöv & grubbström 2024). almlöv and grubbström (2024) also highlight that novice supervisors (largely early career academics) often become co-supervisors. in their study, almlöv and grubbström (2024) found that novice co-supervisors carried the emotional load of students while they experienced the supervision culture as closed. this leads to ambivalence while figuring out where their responsibilities start and end (almlöv & grubbström 2024). i will admit that writing this community paper has forced me to reflect on my research supervision over the years and wonder what has informed that. i have seen several master’s students through their research and am currently busy with several doctoral students. however, my statement haunts me as i draw near the end of this reflective piece. the statement relates to the success of the supervisory process, which is not necessarily measured by students graduating in record time. as waghid (2015) argues, the importance of knowledge production cannot just be about performing a technical exercise that produces a technically compliant manuscript. research and the academy are to produce work that responds to complex societal needs (waghid 2015, 2020). so, as a researcher waiting to emerge, i have to ask myself if i have reached the conceptual threshold to do this work with integrity. i can also not truly reflect on leslie’s supervision style beyond my experience. my fantasy would be for him to write a research supervision for dummies handbook for me to call upon when that anxiety hits, as it often does. in writing this community paper and trying to notice what he was doing and how he did it, i learned a lot about being your student’s champion, not in a weird, infantilising way. ubuntu and its potential for pedagogical encounters could be a force of decoloniality within the teaching and learning space. ubuntu undermines exclusion and humiliation that can result from encounters with supervision. the unintentional harm and disempowerment of students, which results in feelings of exclusion and humiliation, is often associated with supervisors inadequately attending to issues of power and privilege within the supervisory encounter (kovič & mcmahon 2023). co-belonging in supervision encourages students to act freely, as co-belonging is connected to the freedom to inquire critically (waghid 2020). i have learned that sometimes co-creating the space with your student fosters a sense of independence and an attitude of lifelong learning. i suppose leslie is constantly teaching me beyond the kitchen table. mentorship is essential to emerging scholars’ success and career advancement (dhunpath 2018). i am aware of some supportive structures in the form of workshops for supervisors at my current institution. however, these often occur during teaching time. at my institution, we are enrolled in mentorship programmes that provide some supportive structures. a challenge emerging academics face in getting appropriate mentorship opportunities is identifying willing and able mentors (dhunpath 2018). this is also exacerbated by academics’ preoccupation with their own success, given the neoliberal publish or perish imperative. dhunpath (2018) express how unfortunate this is because of how important mentorship is in fostering a sense of confidence and competence in emerging scholars. much of my success is because of the mentorship programme i am enrolled in and from my supervisory relationship with leslie extending beyond the pedagogical encounter to mentorship and sometimes sponsorship. appropriate, well-matched mentorship aids emerging scholars’ success in higher education (dhunpath 2018). therefore, the mentee-mentor dyad ought to be a good fit, with the mentor mindful of cross-race relationality (relating across racial differences), as higher-ranking academics are still predominantly white in institutions of higher learning in south africa. mentorship as a concept can be elusive and ill-defined (dhunpath 2018). mentorship programmes within academic institutions must have well-defined mentorship models. this is especially true because specific academic tasks, like supervision, need training and guidance to create competency in the emerging supervisor (dhunpath 2018). in lieu of a conclusion, thank you, leslie leslie knows that wrapping up thoughts and writing conclusions has never been a strength of mine, but he has also told me that the type of work i usually engage in can seldom be wrapped up easily. a colleague recently told me that for the kind of work we do, a conclusion is often never a conclusion but rather the start of a conversation. so, maybe that is what i am doing here: starting a conversation. as a guiding force, ubuntu offers us a unique opportunity as south african scholars. it feels like a superpower written in our dna that, if called upon, could help us realise the radical transformation we seek as a country and in the academy. centring ubuntu in supervision with our students could lead to transformational learning, which is necessary for them to develop as independent and critical thinkers. attention must be paid to the experiences of emerging scholars who may be suffering in silence while trying to fulfil the demands of their jobs. more effort has to be put into enabling emerging researchers to do their jobs effectively. it is alarming how many conversations i have daily where young academics struggle to see a career in academia (shabalala & mapaling 2024). leslie’s long and gracious career should be a call to all of us to do and be better for ourselves and others. it takes nothing away from us to open up resources and share our time and experience. the gatekeeping culture is threatening, and the loss of academic freedom felt by academics is disheartening. i feel indebted to leslie for selflessly supporting me throughout my career, and the only way for me to feel like it was worth the effort he made and the time he invested in me is to embody that grace and humanness myself – ngibenobuntu (and embody ubuntu). leslie, i do not have enough words to thank you for how much you have invested in me and continue to do so. i am truly grateful to you. acknowledgements competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution n.s. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s results, findings and content. references almlöv, c. & grubbström, a., 2024, ‘“challenging from the start”: novice doctoral co-supervisors’ experiences of supervision culture and practice’, higher education research & development 43(1), 17–31. https://doi.org/10.1080/07294360.2023.2218805 boylorn, r.m. & orbe, m.p. (eds.), 2020, critical autoethnography: intersecting cultural identities in everyday life, routledge, walnut creek, ca. dhunpath, r., 2018, ‘towards a model of mentoring in south african higher education’, alternation journal 25(2), 74–105. dladla, n., 2020, here is a table: a philosophical essay on history and race/ism, african sun media, stellenbosch. haimbodi, f.n., 2024, ‘supervisory relationships with doctoral candidates’, in k. luneta, j. golding, h.m. kapenda & p.p. nalube (eds.), doctoral supervision in southern africa: from theory to practice, pp. 59–70, springer nature switzerland, cham. heyns, t., bresser, p., buys, t., coetzee, i., korkie, e., white, z. & mc cormack, b., 2019, ‘twelve tips for supervisors to move towards person-centered research supervision in health care sciences’, medical teacher 41(12), 1353–1358. https://doi.org/10.1080/0142159x.2018.1533241 jones, s.h., adams, t. & ellis, c., 2016, ‘introduction: coming to know autoethnography as more than a method’, in s.h. jones, t.e. adams & c. ellis (eds.), handbook of autoethnography, pp. 17–48, routledge. kovič, d. & mcmahon, a., 2023, ‘building trust: supervisees’ experience of power dynamics in transdisciplinary workplace supervision’, journal of social work practice 37(4), 403–417. https://doi.org/10.1080/02650533.2022.2162491 maistry, s.m., 2017, ‘betwixt and between: liminality and dissonance in developing threshold competences for research supervision in south africa’, south african journal of higher education 31(1), 119–134. https://doi.org/10.20853/31-1-841 oparinde, k., 2021, ‘post-graduate supervision: a heuristic approach to learning, unlearning, and relearning’, asian journal of university education 17(4), 243–250. https://doi.org/10.24191/ajue.v17i4.16202 parker, i., 2014, ‘managing neoliberalism and the strong state in higher education: psychology today’, qualitative research in psychology 11(3), 250–264. https://doi.org/10.1080/14780887.2013.872214 ramose, m., 2015, ‘ecology through ubuntu’, in r. meinhold (ed.), emerging from cultures and religions of the asean region, p. 69, bangkok. shabalala, n., 2018, ‘feeling some typ’a way: a young black woman’s experience of education in south africa’, south african journal of higher education 32(4), 215–228. https://doi.org/10.20853/32-4-2067 shabalala, n., 2022, ‘what is happening here?: an auto-ethnographic account of an emerging woman academic’s entry into the academy in south africa’, thinker 92(3), 7–16. https://doi.org/10.36615/thethinker.v92i3.1454 shabalala, n. & mapaling, c., 2024, ‘navigating the neoliberal university: a collaborative autoethnography of emerging scholars’, transformation in higher education 9, 407. https://doi.org/10.4102/the.v9i0.407 van rensburg, g.h., mayers, p. & roets, l., 2016, ‘supervision of post-graduate students in higher education’, trends in nursing 3(1). https://doi.org/10.14804/3-1-55 vereijken, m.w., van der rijst, r.m., van driel, j.h. & dekker, f.w., 2018, ‘novice supervisors’ practices and dilemmatic space in supervision of student research projects’, teaching in higher education 23(4), 522–542. https://doi.org/10.1080/13562517.2017.1414791 waghid, y., 2015, ‘are doctoral studies in south african higher education being put at risk?’, south arican journal of higher education 29(5), 1–19. https://doi.org/10.20853/29-6-532 waghid, y., 2020, ‘towards an ubuntu philosophy of higher education in africa’, studies in philosophy and education 39(3), 299–308. https://doi.org/10.1007/s11217-020-09709-w wood, l. & louw, i., 2018, ‘reconsidering post-graduate “supervision” form a participatory action learning and action research approach’, south african journal of higher education 32(4), 284–297. https://doi.org/10.20853/32-4-2562 woods, d., 1991. biko, 3rd rev. edn., henry holt, new york. book review disability, health and human development – book review book title: disability, health and human development author: sophie mitra isbn: 978-1-137-53637-2 publisher: palgrave macmillan, new york, 2018, 28,00 €* *book price at time of review review title: disability, health and human development – book review reviewer: zuzana matousova-done1 affiliation: 1private, cape town, south africa corresponding author: zuzana matousova-done, new.beginnings.aid@gmail.com how to cite this article: matousova-done, z., 2019, ‘disability, health and human development – book review’, african journal of disability 8(1), a538. https://doi.org/10.4102/ajod.v8i0.538 copyright notice: © 2019. the authors. licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. as a nurse trained in intellectual disability in the united kingdom – and currently working in south africa – i found sophie mitra’s new book disability, health and human development informative, well researched and thought-provoking. it proposes a new conceptual framework, the human development model, for persons living with disabilities in lowand middle-income countries (lmics) using the washington group short set of questions on disability – collected as part of the living standard measure study. this set of questions assesses disability in six domains: seeing, hearing, walking, concentrating or remembering, self-care and communicating. data sets from ethiopia, malawi, tanzania and uganda are analysed and interpreted to offer a fresh outlook on the definition of disability, health deprivation and the causes and consequences for well-being in lmics. importantly, mitra disabuses the reader of the misconception that disability disproportionately affects high-income countries (hics) because of longer life expectancies. she explains that worldwide populations are living longer and growing older; in hics, the advances in healthcare have often been coupled with the promotion of inclusivity, provision of resources, education, adapted workplace environments and social security to give people with various degrees of disability better opportunities to achieve their full potential and to reach their goals, dreams and aspirations. by contrast, mitra argues, many lmics have developed policies and legislation on disabilities without fully considering the conventions on the rights of persons with disability (united nations [un] 2008), and these policies may not provide an adequate solution to better the quality of life of persons with disability, despite the improvements in certain health parameters. mitra highlights that this group of people in lmics often remain highly marginalised within their communities and may have no access to social security programmes or workplaces or education that is adapted to meet their needs, thus trapping them in a cycle of poverty. her data also suggest that those with disabilities who are female, over 65 years age and already living in low-income households are especially unlikely to break out of this cycle. the human development model that mitra introduces is based on amartya sen’s capability approach, which addresses different challenges in welfare economics related to disability, including standard of living, poverty and well-being (mitra 2017:11). the capability approach focuses on the ability of a person to live life and have reason to value (wells 2012) through practical opportunities (called capabilities) and achievements (called functioning). arising from this paradigm, mitra (2017) offers a new definition of disability as: a deprivation in terms of functionings and/or capabilities among persons with health deprivations…health deprivation and disability result from the interaction of personal factors (e.g. sex and age), structural factors (e.g. policies, social attitudes and physical environment) and resources (e.g. asset, information). (p. 154) mitra then argues convincingly for the importance of a person-centred approach in lmics and describes clearly the need for holistic care, inclusivity, accessibility, adapting the physical environment and the crucial role of policymakers in poor communities to relieve the ‘deprivation’ that she defines. the book is clearly and logically set out as follows: chapter 1 introduces the research; it sets the tone for the book and hints at the research questions to which mitra offers preliminary answers based on research results, implications and ideas for further research as offered in chapter 7. mitra includes readers that may skip the quantitative method section and accounts to wide audience of readers throughout the chapters. chapter 2 offers the conceptual framework, introduces the human developmental model and compares it to other disability models that have been applied in the disability context; mitra uses this framework to formulate a particular theoretical link between poverty and disability. the empirical context, data collection, analysis, methods, literature review and results, as well as reasons for choosing the four countries investigated, are discussed in chapters 3–6. for a wide disability audience, mitra manages to garner and reinforce awareness regarding the prevalence and socio-economic status as mediated by inequality. chapter 7 summarises the main results in a more accessible discussion and considers the implications for policies, programmes and data. each chapter is formatted with an abstract and conclusion, which enables the reader to understand the main concepts and how they interlink across chapters. each chapter also links explicitly to the human developmental model such that the reader gains an integrated understanding of the model and its application. furthermore, mitra critically analyses each point and offers possible solutions to identified limitations. what this book does particularly well is to explain how mitra arrived at her revised definition of disability, with the use of short examples and scenarios to clarify the more conceptual aspects of the research. one minor criticism: for a work that is conceptually and linguistically dense and which has a target audience that will contain many secondand third-language english speakers such as myself, it would have been more user-friendly if all the terms introduced in chapter 2 were also compiled and summarised into a separate glossary for quicker reference when reading the rest of the book. overall, however, mitra displays an impressive first-hand understanding of the issues around disability in lmics and convincingly demonstrates both the hardships endured by disabled people in these communities and the need for a holistic person centred approach to their care. references mitra, s., 2017, disability, health and human development, palgrave macmillan (palgrave studies in disability and international development, new york. united nations (un), 2008, convention on the rights of persons with disabilities, viewed 02 may 2018, from https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html. wells, t.r., 2012, ‘sen’s capability approach’, in j. feiser & b. dowden (eds.), internet encyclopedia of philosophy, viewed 24 april 2018, from http://www.iep.utm.edu/sen-cap/. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) rachid lotfi department of biology, faculty of sciences and techniques, university of sultan moulay slimane, beni mellal, morocco hind bel amgharia department of biology, faculty of sciences and techniques, university of sultan moulay slimane, beni mellal, morocco sami ennaciri department of biology, faculty of sciences and techniques, university of sultan moulay slimane, beni mellal, morocco mourad chikhaoui department of biology, faculty of sciences ben m’sik, university hassan ii, casablanca, morocco abdeslam el kardoudi department of biology, faculty of sciences and techniques, university of sultan moulay slimane, beni mellal, morocco fatiha chigr department of biology, faculty of sciences and techniques, university of sultan moulay slimane, beni mellal, morocco citation lotfi, r., bel amgharia, h., ennaciri, s., chikhaoui, m., el kardoudi, a. & chigr, f., 2024, ‘the impact of fatigue on people with multiple sclerosis in morocco’, african journal of disability 13(0), a1376. https://doi.org/10.4102/ajod.v13i0.1376 research project registration: project leaders: lotfi rachid and fatiha chiger project number: 1307867 original research the impact of fatigue on people with multiple sclerosis in morocco rachid lotfi, hind bel amgharia, sami ennaciri, mourad chikhaoui, abdeslam el kardoudi, fatiha chigr received: 13 nov. 2023; accepted: 22 may 2024; published: 31 july 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: multiple sclerosis (ms), fatigue is among the leading clinical symptoms. it is one of the most disabling symptoms for most ms people. objectives: this research measures the prevalence of fatigue and its impact on the physical, cognitive, and psychosocial abilities of individuals with ms in morocco. method: this cross-sectional and descriptive study included 152 participants. data were collected via an online survey using the snowball method, incorporating sociodemographic characteristics and the arabic version of the modified fatigue impact scale. results: according to the results, 89.4% of respondents experienced pathological fatigue, with an average score of 65.52 (± 18.00). there was a significant relationship between pathological fatigue, age (p = 0.0324), and clinical phenotype (p = 0.041). fatigue negatively impacted participants’ physical, cognitive, and psychological capacities, with average scores of 70.38 (± 8.15), 62.28 (± 10.23), and 73.87 (± 1.86), respectively. conclusion: the results of our study confirmed a high prevalence of fatigue among people with ms in morocco. sustained research in this field remains crucial, as it enables the formulation of strategies aimed at enhancing the quality of life for those impacted by ms. contribution: this study is the first in morocco to examine fatigue prevalence in people with ms and its impact on their physical, cognitive, and psychosocial abilities. high fatigue levels hinder the integration of people with ms into professional and student life. the findings emphasize the need for effective symptom and fatigue management. keywords: multiple sclerosis; pathological fatigue; physical, cognitive; psychosocial abilities. introduction multiple sclerosis (ms) is a chronic autoimmune and neurodegenerative disease affecting the central nervous system (cns). in ms, the immune system mistakenly attacks the myelin sheath, leading to inflammation, demyelination and ultimately damage to the nerve fibres themselves. this disruption in the transmission of nerve impulses can cause a wide range of symptoms, including fatigue (lassmann 2018). fatigue is among the main clinical symptoms of ms (chaudhuri & behan 2004). it affects 69% – 90% of people with ms (giovannoni et al. 2001; lotfi, el kardoudi & chigr 2024; murray 1985; rooney et al. 2019). it is known as one of the most incapacitating symptoms of ms (lobentanz et al. 2004). fatigue is a subjective lack of psychoemotional or physical energy to realise daily and desired activities (guidelines 1998). it is a reversible impairment of motor and cognitive functions accompanied by decreased motivation and a need to rest. it could occur naturally or as a result of mental or physical activity, an infection or food ingestion (mills & young 2008). this symptom is multidimensional, complex and multi-causal, involving central and peripheral fatigue mechanisms (langeskov-christensen et al. 2017). primary fatigue in ms is often attributed to the disease process itself, including inflammation, demyelination and axonal loss in the central nervous system (finlayson, preissner & cho 2012; kos et al. 2008; tur 2016). fatigue is ms’s principal risk factor affecting the quality of life (qol) (ciampi et al. 2018). thus, there is a significant dependency between fatigue and the decline of qol in ms (barin et al. 2018; dymecka & bidzan 2018; klevan et al. 2014; leonavicius 2016; schmidt & jöstingmeyer 2019; shahrbanian et al. 2015). in this regard, a survey conducted among 217 people with ms to assess the association between fatigue, sleep quality and quality of life revealed that 56.4% of respondents experienced substantial ms-related fatigue, leading to a detrimental impact on their quality of life (tabrizi & radfar 2015). furthermore, ms-related fatigue adversely affects the psychological, physical, social and cognitive dimensions of people with ms (collebrusco, tocco & bellanti 2018; debouverie et al. 2007; fernández-muñoz et al. 2015; göksel karatepe et al. 2011; grosset-janin 2014; moore et al. 2022; tabrizi & radfar 2015). thus, fatigue can have a profound impact on various aspects of daily life, including work, social activities and personal relationships. it may limit a person’s ability to engage in physical activities, concentrate on tasks or maintain employment. this symptom can also exacerbate feelings of frustration, stress and depression in individuals with ms. it is important for healthcare providers to address the emotional and psychological impact of fatigue and provide appropriate support and resources for coping. furthermore, studies have revealed a relationship between fatigue and certain specific sociodemographic factors, including gender (laabidi et al. 2019), age, education (lerdal, celius & moum 2003) and occupation (gerhard et al. 2020). overall, fatigue is a complex and challenging symptom of ms that requires individualised management strategies tailored to the specific needs and circumstances of each person with ms. our study on fatigue associated with ms can contribute to advancing scientific knowledge, improving care for people with ms and raising awareness among people with ms, healthcare professionals and decision-makers to address this symptom. in addition, our investigation also helps to inform treatment decisions and better manage and alleviate the impact of fatigue in people living with ms on different aspects: physical, psychological, social and cognitive. our study may assist in identifying potential risk factors or predictors associated with the onset or exacerbation of fatigue symptoms. this information can help healthcare professionals identify those most at risk of fatigue and implement preventative measures or early interventions. thus, this research attempts to measure fatigue prevalence and its impact on the physical, cognitive and psychosocial abilities of individuals suffering from ms in morocco. research methods and design study design we conducted a cross-sectional and descriptive study with a sample of 152 individuals who were definitively diagnosed with ms according to current criteria. the patients included in the study come from four regions of morocco. setting we conducted this study among patients with multiple sclerosis from the four moroccan regions of fez-meknes, marrakech-safi, casablanca-settat, and beni mellal-khenifra. the choice of these four regions was due to the collaboration of multiple sclerosis associations in data collection. study population and sampling strategy the study involved a sample of patients diagnosed with ms recruited from the four moroccan regions. inclusion criteria included a confirmed diagnosis of ms according to mcdonald’s criteria, the age of the patients (18–65 years), and the ability to consent to participate in the study. in morocco, people with ms constitute a hard-to-reach population. for this reason, we adopted a simple, practical, and inexpensive convenience sampling method called respondent sampling, or’snowball’ sampling. this method involves a form of referral sampling, where participants are recruited through referrals from initial participants. in this case, the presidents of ms associations acted as the initial participants who recruited their members, who in turn recruited others, creating a chain or ‘snowball’ effect. we included patients with progressive ms and relapsing-remitting ms (rrms) in our study. people whose diagnosis was not confirmed according to current criteria and those with paediatric ms were excluded from our investigation. participants and recruitment in morocco, people with ms constitute a hard-to-reach population. for this reason, we adopted a simple, practical and inexpensive convenience sampling method called respondent sampling or ‘snowball’. this method involves a form of referral sampling, where participants are recruited through referrals from initial participants. in this case, the presidents of ms associations act as the initial participants who recruit their members, who in turn may recruit others, creating a chain or ‘snowball’ effect. we included patients with progressive ms and relapsing-remitting ms (rrms) in our study. people whose diagnosis was not confirmed according to current criteria and those with paediatric ms were excluded from our study. the 2017 mcdonald criteria, which include magnetic resonance imaging (mri), clinical symptoms and laboratory findings, were used to determine the ms diagnosis (mcginley, goldschmidt & rae-grant 2021). data collection we collected data via an online survey among people with ms. we used, also a platform specialised in remote scientific surveys called «sphinxdeclic, v.4.29» for data collection. we shared the survey link in whatsapp groups of ms associations’ members. integrating the online survey platform with the whatsapp groups was an approach to enhance the validity of responses and improve participant engagement. it should also be noted that these whatsapp groups only contain people with ms. for patients with serious physical disabilities, we contact them directly through a telephone call. through this platform, people with ms were able to contact us personally if they did not understand the survey questions. furthermore, we carried out a pilot survey with five people with ms to refine and finalise the questionnaire before implementing it on a larger scale. this questionnaire included sociodemographic data (age, gender, career, marital status, level of formal education, health insurance and province of residence), as well as the widely used and reliable patient determined disease steps scale (pdds). the pdds is a scale of a patient-reported outcome of disability in ms and has nine ordinal levels ranging between 0 (normal) and 8 (bedridden), which assesses the degree of disability. our questionnaire also included the arabic adaptation of the modified fatigue impact scale (mfis) (khalil et al. 2019). the mfis was adapted from the fatigue impact scale (fis), developed by firsk et al. and validated by the kos et al. (2005). this measure includes 21 items and examines the three components of fatigue: cognitive, physical and psychosocial. the scores of the physical, cognitive and psychosocial subscales are added to get the final mfis score, which ranges from 0 to 84. the score obtained out of 84 is standardised out of 100. fatigue score is pathological when greater than or equal to 45/100. we collect data between may and december 2022. data analysis for data analysis, ibm statistical package for the social sciences (spss) version 20 (multinational technology company headquartered in armonk, new york) was used to identify the relationship between sociodemographic variables characters (age, medical coverage, school level, marital status, province of residence, gender and profession) and pathological fatigue. the fisher student test was used to test the association between categorical and numerical variables. we displayed data as average with standard deviations (sd). we employed multivariable analysis to investigate the relationship between sociodemographic variables and fatigue. to illustrate which sociodemographic factors are strongly linked with fatigue, we use the complete multivariable model. we use odds ratios (or), 95% confidence intervals (ci) and p-values to present the results. all p-values had a 5% significance threshold and were two sided. ethical considerations ethical clearance to conduct this study was obtained from the sultan moulay slimane university, biological engineering laboratory (no. fst/lgb/2016/28-feb./2017-dec.2019). we received written informed consent from each participant for the questionnaire after describing the purposes of the research, the value of their input and their right to decline participation. the data have been anonymised and are not linked to any specific individuals. results according to the results, 75.7% of participants were women, with a mean age of 32.59 (sd ± 9.31). additionally, the findings indicated that the survey population had an employment rate of 42.8%, compared to a national average of 39.7% for moroccans (hcp 2021). more than 53.0% did not have any public or private medical insurance. the majority of participants (78.2%) had a university degree in terms of education (table 1). the pdds’s median score was 4.0, which represents a moderate level of disability. the findings indicated that the main symptoms presented by participants were fatigue (86%), cognitive complaints (70%), spasticity (62%), urinary and digestive disorders (54%), visual impairments (52%), pain (52%), mobility complaints (48%), sensory disorder (44%) and 20% present tremor (table 1). table 1: sociodemographic and clinical characteristics (n = 152). with a mean score of 65.52 (sd± 18.00), the results showed that most participants (89.4%) experience pathological fatigue. in addition, the findings showed a significant relation between pathological fatigue and age (p = 0.0324): older participants were more exposed to pathological fatigue) and clinical phenotype (p = 0.041): there was an association between the presence of fatigue and progressive ms form. for the relationship between fatigue and other sociodemographic variables, the results showed no statistically significant relationship. however, in general, we found that women (or = 2.03), married (or = 3.22), study participants who had children (or = 3.38), and study participants without jobs (or = 1.78) were more exposed to pathological fatigue (table 2). table 2: fatigue description according to sociodemographic characteristics (n = 152). with a mean score of 70.38 (sd ± 8.15), pathological fatigue affecting physical capacity affected most participants (84.2%). in addition, 75% of study participants suffered from cognitive fatigue, with a mean score of 62.28 (sd ± 10.23), and 88.2% experienced psychological fatigue, with a mean score of 73.91 (sd ± 1.86) (table 2). according to the results, physical, psychosocial and cognitive ability were negatively correlated with fatigue (p ≤ 0.0001). the analysis showed no statistically significant association between physical, psychosocial and cognitive ability and sociodemographic characteristics such as gender, age, marital status and job. however, the cognitive and psychosocial ability of women (or = 3.15, or = 2.45) and inactive participants (or = 1.45, or = 3.00) were more affected by pathological fatigue (table 3). table 3: fatigue description according to the cognitive, physical and psychosocial dimensions (n = 152). discussion our study showed a significant correlation between ms and fatigue. 89.4% of respondents had pathological fatigue, with a mean score of 65.52 (sd ± 18.00). our results indicated that the prevalence of fatigue in morocco is considerably higher than that reported in other studies conducted in africa and europe. this may be due to difficulties in accessing treatment. in morocco, between 70.4% and 89.6% of people with ms do not have access to disease-modifying therapy (lotfi, chigr & najimi 2022a; lotfi et al. 2022b), given that the average cost of treatment is almost $1200 (lotfi et al. 2024). for instance, fatigue was present in 65.0% of people in tunisia (gharsallah et al. 2023), 66.2% in algeria (khellaf et al. 2017) and 56.2% in iran (tabrizi & radfar 2015). an earlier study in france found an average fatigue score of 57.7 (debouverie et al. 2009), while another study in the united kingdom (uk) found a fatigue rate of 55% (moore et al. 2022). regarding the relationship between sociodemographic characteristics and the level of fatigue, the results indicated that women were more affected than men. this finding is consistent with the study by laabili and his colleagues (laabidi et al. 2019), which revealed a female predominance in fatigue suffering. however, another study showed that severe fatigue is more common in men (hadjimichael, vollmer & oleen-burkey 2008). these contradictory findings demonstrate the intricacy of the relationship, which is impacted by a wide range of factors, including biological, psychological and socio-cultural variables between gender and fatigue. differences in study populations, methodologies, context of the research or definitions of fatigue may contribute to these discrepancies. further research is needed to better understand the underlying mechanisms and determinants of differences in fatigue between men and women in different populations and conditions. in addition, our survey revealed a positive association between fatigue and age. this outcome is consistent with several studies that have established the correlation between fatigue in ms and age: study participants with pathological fatigue tended to be older (hadjimichael et al. 2008; khellaf et al. 2017; lerdal et al. 2003; mahmoud et al. 2019; marchesi et al. 2020; riccitelli et al. 2021). in the same context, the finding showed that progressive ms form was statistically correlated to fatigue. this finding is also revealed by mahmoud and his colleagues in tunisia (mahmoud et al. 2019). several factors could influence the relationship between age and fatigue severity in ms. fatigue severity may be influenced by the duration of ms (razazian et al. 2014); older individuals with longer disease duration might experience more severe fatigue compared to younger individuals who are earlier in their disease course. with advancing age and disease duration, individuals with ms may accumulate more physical disability, which can contribute to increased fatigue. furthermore, older individuals with ms may be more likely to have comorbid health conditions, such as cardiovascular disease or arthritis, which can exacerbate fatigue symptoms (finlayson, preissner & cho 2013). age-related cognitive changes or cognitive impairment associated with ms may impact how individuals perceive and cope with fatigue (cameron et al. 2014). additionally, side effects of medications used to manage ms symptoms may contribute to fatigue (ayache & chalah 2017). finally, age-related life changes, such as retirement or changes in social support networks, may influence fatigue levels. furthermore, our findings showed that married study participants were more affected by pathological fatigue. this result concurs with the results of a study conducted by ustunova and ünsar (2021), who reported that more than 91.1% of married study participants suffer from fatigue. in addition, our result indicated that study participants without professional activity suffer more from pathological fatigue. several studies show that individuals with pathological fatigue are usually unemployed (gerhard et al. 2020; hadjimichael et al. 2008; ustunova & ünsar 2021). the findings demonstrated that the physical state of most study participants has unfavourable effects from fatigue. thus, ms-related fatigue adversely affects physical capacity (moore et al. 2022). collebrusco et al., in their study, revealed a negative fatigue effect on the physical ability of study participants, with an average score of 69.44 (collebrusco et al. 2018). another study showed that people with ms suffer from several problems because of the effects of fatigue on their physical condition (göksel karatepe et al. 2011). furthermore, study participants with lower physical activity have high intense fatigue levels (rzepka et al. 2020). the analysis showed no statistically significant association between physical, psychosocial and cognitive ability and sociodemographic characteristics such as gender, age, marital status and job. however, these abilities were significantly affected by pathological fatigue in women and non-active study participants. this finding was consistent with the investigation of debouverie and his colleagues, whose mean cognitive function score was 46.8 (debouverie et al. 2007). furthermore, another study showed that fatigued study participants most often have a cognitive complaint compared to those who do not (grosset-janin 2014). in addition, the results also showed a significant influence of fatigue on the cognitive dimension of study participants. in this regard, some characteristics, such as gender and professional activity, can promote cognitive fatigue. our results reported that the impact of fatigue was very significant on the psychosocial state of study participants. this finding was consistent with the one published by tabrizi and radfar, who reported that the mean social dimension score is 61.76 (tabrizi & radfar 2015). moreover, fatigue stands as one of the primary factors prompting people with ms to consider early retirement from their employment (schiavolin et al. 2013). göksel and his colleagues also indicated that fatigue influences the emotional state of persons with ms (göksel karatepe et al. 2011). in the same direction, the present study reveals that specific factors such as gender and professional activity can promote psychosocial fatigue. from the above, it appears that fatigue is one of the most debilitating symptoms experienced by people with ms. consequences of fatigue can have a significant impact on their physical, cognitive, emotional and social functioning. these consequences require personalised approaches. strategies adopted in fatigue management in people with ms include medication management (marchesi et al. 2022), regular exercise (razazian et al. 2020), energy conservation techniques (harrison et al. 2021), sleep hygiene (akbarfahimi et al. 2020), stress management (shohani et al. 2020), nutrition and hydration (azzolino et al. 2020), pacing activities (abonie & hettinga 2021), cognitive behavioural therapy (shareh & robati 2020), support groups (mikula et al. 2020) and regular follow-up (kratz et al. 2020). furthermore, various studies have explored the potential benefits of traditional and complementary medicine in managing symptoms associated with ms, including fatigue (hasanpour dehkordi 2016; irish et al. 2017; lotfi et al. 2024; siev-ner et al. 2003). study critique the importance of our study lies in its pioneering efforts to investigate the prevalence of fatigue in people with ms in morocco and to assess its impact on various aspects of their lives, including physical, cognitive and psychosocial. by highlighting the challenges encountered by people with ms in morocco, particularly in terms of integration into professional and student life, our study highlights the importance of addressing symptom management, particularly fatigue. additionally, this study fills an important gap in the literature by providing valuable information on the prevalence and impact of fatigue in people with ms in the country. it lays the foundations for future studies and clinical interventions adapted to the needs of moroccan people with ms. through this study, we describe the frequency and effects of fatigue in people with ms, which helps healthcare stakeholders understand the difficulties faced by people with ms in morocco. this could lead to more accurate identification of fatigue as a disabling symptom and the creation of targeted strategies to deal with it. we also highlighted the negative impact of fatigue on the ability of people with ms to integrate into their professional and academic lives. employers, schools, and legislators need to know this information to put support and accommodations in place that help people with ms participate in many facets of society. effective management of fatigue can significantly improve the quality of life and functional abilities of people with ms. despite the work’s advantages, there are certain limitations. including the sampling method, which could hurt the generalisation of the results, and the difficulties in reaching people with this disease in direct contact, which required us to conduct online surveys for data collection. conclusion the results of our study confirmed a high prevalence of fatigue among people with ms in morocco. additionally, our study highlighted the multifaceted impact of fatigue on people with ms, affecting not only physical functioning but also cognitive and psychosocial well-being. our results also identified associations between pathological fatigue and specific ms characteristics, such as age and clinical phenotypes, providing valuable data on potential risk factors or underlying mechanisms contributing to fatigue associated with ms. ongoing research is needed to better understand the underlying mechanisms of fatigue in ms and develop more effective interventions to alleviate its burden on those living with the condition. acknowledgements the authors would like to acknowledge the associations of patients with multiple sclerosis for their support in data collection. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions r.l.: conceptualisation, methodology, software, formal analysis, investigation, data curation, writing original draft, visualisation. h.b.a.: methodology, software, formal analysis. s.e.: software, formal, review, analysis. m.c.: resources, writing and review. a.e.k.: resources, writing and review. f.c.: conceptualisation, methodology, validation, writing – review and editing, supervision and project administration. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available on reasonable request from the corresponding author, r.l. disclaimer the views and opinions expressed in this article are those of the author(s) and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author(s) are responsible for this article’s results, findings and content. references abonie, u.s. & hettinga, f.j., 2021, 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care 17(6), 268–274. https://doi.org/10.7224/1537-2073.2014-046 tur, c., 2016, ‘fatigue management in multiple sclerosis’, current treatment options in neurology 18(6), 26. https://doi.org/10.1007/s11940-016-0411-8 ustunova, a. & ünsar, s., 2021, ‘multipl sklerozlu hastalarda yorgunluğun ve günlük yaşam aktivitelerinin değerlendirilmesi’, gümüşhane üniversitesi sağlık bilimleri dergisi 10(4), article 4. https://doi.org/10.37989/gumussagbil.800245 abstract introduction methodology findings discussion conclusion acknowledgements references about the author(s) madri engelbrecht centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa yandisa ngqangashe centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa luphiwo mduzana bhsc medical orthotics and prosthetics, faculty of health sciences, walter sisulu university, mthatha, south africa kate sherry centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lieketseng ned centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation engelbrecht, m., ngqangashe, y., mduzana, l., sherry, k. & ned, l., 2023, ‘disability inclusion in african health systems’ responses during covid-19: a scoping review’, african journal of disability 12(0), a1284. https://doi.org/10.4102/ajod.v12i0.1284 review article disability inclusion in african health systems’ responses during covid-19: a scoping review madri engelbrecht, yandisa ngqangashe, luphiwo mduzana, kate sherry, lieketseng ned received: 29 june 2023; accepted: 23 oct. 2023; published: 21 dec. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with disabilities often experience poorer access to healthcare because of multiple barriers even in non-crisis times, especially more so in lowand middle-income countries. the coronavirus disease 2019 (covid-19) pandemic significantly constrained health systems, thus exacerbating access barriers. african health system responses to, and considerations made for people with disabilities during the pandemic have not been adequately examined to inform future inclusive practices during emergent and non-emergent periods. objectives: this review aimed to explore disability considerations and accommodations included by african governments in their health systems’ responses during the covid-19 pandemic. method: a scoping review was carried out of peer-reviewed published articles on the web of science, academic search premier, medline, africa-wide info, and cinahl databases. a desktop search of african government websites for covid-19 country plans and reports was also conducted. deductive thematic analysis of included texts was performed to identify disability inclusiveness in the health responses. results: ten peer-reviewed articles and three covid-19 country plans or reports were included in the review. data reflected a general finding that included countries that failed to effectively consider and include the healthcare needs of persons with disabilities during the pandemic. conclusion: poor inclusion of persons with disabilities was effected in healthcare systems’ responses during covid-19 in africa. contribution: this article contributed insights about gaps in healthcare systems’ responses and highlighted development foci that could improve systems towards greater inclusivity of persons with disabilities’ health needs in lowand middle-income countries. keywords: disability inclusion; health systems’ responses; covid-19; africa; scoping review; deductive thematic analysis; healthcare access. introduction people with disability are often excluded from policy actions during emergency responses to crises situations (mckinney, mckinney & swartz 2020; ned et al. 2020; toquero 2020). prior to the coronavirus disease 2019 (covid-19) pandemic, studies of disaster risk frameworks showed that people with disabilities are not explicitly considered in such frameworks, despite the adoption of the sendai framework disaster risk reduction 2015–2030 that guides inclusive disaster risk responses (bennett 2020). for example, a study of indonesian disaster regulation laws found that people with disabilities were not mentioned in higher laws, and were often referred to as ‘vulnerable groups’ or mentioned with other vulnerable groups (pertiwi, llewellyn & villeneuve 2020:3). with climate change, social instability, and new and emerging infectious diseases likely to cause more global health emergencies as observed during covid-19, there is a need to continuously examine disaster responses to realise inclusion and rights of people with disabilities. both the pandemic and its measures for containment, if not inclusive, pose threats to people with disabilities. thus, more research is needed to explore the inclusiveness of health systems during the covid-19 pandemic, more so in lmics (lowand middle income countries) as 80% of the 16% global population with disabilities live in lmics (world health organization [who] 2022). the covid-19 pandemic caused major disruptions in global health systems and challenged governments and health systems to make quick policy decisions to reduce the virus spread and curb morbidity and mortality associated with the virus (haldane et al. 2021). health systems had to ensure availability of hospital beds and staff to deal with the covid-19 patient loads while preventing complete health system collapse (haldane et al. 2021). for example, many countries around the world restricted the use of hospital services by cancelling and rescheduling elective and non-urgent procedures (desborough et al. 2020; kendzerska et al. 2021) as well as through diverting other health services and facilities to respond to the pandemic. school closures similarly impacted the health and function of people who received such health services through schools. people with disability were particularly affected by these changes in routine services because many people with disabilities have higher health needs including rehabilitation, medications, and other specialist services (ned et al. 2020, 2021). in addition, some hospitals transitioned to remote services through telemedicine and closed certain wards and units to establish and allocate resources for covid-19 patients (desborough et al. 2020; haldane et al. 2021). although telemedicine plays a significant role in decreasing extra costs for some, such as travel costs, while also enhancing access for others, its limited availability within public health settings, poor connectivity, as well as an existing digital divide means that it may not be appropriate for a huge section of society in remote settings and for specific impairments. triage systems were used to prioritise patients for healthcare through considering travel history, severity of covid-19 symptoms, and patients’ risk profile (kendzerska et al. 2021). although these systems were effective for optimising human and material resources for covid-19 patients’ care, certain groups of patients such as those who required chronic care were excluded (kendzerska et al. 2021; sabatello et al. 2020). people with disabilities constitute one group, which was vulnerable to such exclusionary covid-19 policies. as such, some people with disabilities faced barriers while attempting to access vaccines including booking appointments, travelling to vaccination sites for vaccines and inaccessibility of such sites (rotenberg & nagesh 2021). sabatello et al. (2020) highlighted three thematic areas of exclusion that mostly affected people with disabilities during the pandemic, namely communication and medical information, reasonable accommodation, and rationing of medical goods and services. in the first place, studies show that many people with disability had challenges accessing health information from governments and health organisations, such as the who, because of the lack of accommodations like sign language interpreters and subtitles (croft & fraser 2022; fernández-díaz, iglesias-sánchez & jambrino-maldonado 2020). secondly, many hospitals imposed restrictions that limited the number of visitors, preventing people with disabilities from receiving support from caregivers and/or personal assistants in the absence of reasonable accommodations of their visitor needs (sabatello et al. 2020). many hospitals constructed new buildings and/or rearranged existing structures to accommodate the high demand of covid-19 patients and care. the emergency context under which alternative care structures were developed resulted in a disregard of physical accessibility needs although it was not necessarily regarded as a violation of anti-discrimination laws under emergency circumstances (sabatello et al. 2020). insufficient planning in relation to reasonable accommodations led to the exclusion of persons with hearing impairment when transparent face masks for lip-reading were not available during the pandemic (sabatello et al. 2020). thirdly, aspect of exclusion was through rationing of health services and equipment. triage policies of health systems in many countries specifically excluded people with certain disabilities; for example, one north american state originally excluded people with ‘severe or profound mental retardation’, moderate to severe dementia, and traumatic brain injury from ventilator treatment during the pandemic (mello, persad & white 2020:1). in addition, the reduction of health services to prioritise space and human resources for covid-19 also severely impacted people with disabilities as they struggled to access routine health rehabilitation services (agbelie 2023; lund & ayers 2022; tetali et al. 2022). disability is not routinely considered when planning for health services (hunt 2020; ned et al. 2020). sabatello et al. (2020) call for improved disability inclusive policies to ensure that people with disabilities who already experience discrimination in accessing services are not further excluded by covid-19 health policies. even health systems that responded relatively well to the covid-19 pandemic had severe shortcomings in relation to disability inclusion. for example, an australian study found that laws that addressed people who experience multiple exclusion were applicable to people with disabilities, but not specifically for people with disabilities, and thus failed to address the specific needs of people with disabilities (colon-cabrera et al. 2021). these laws failed to address the lack of access to healthcare, employment and social care, and unfair discrimination in medical rationing (colon-cabrera et al. 2021). a south american analysis found good practices in the articulation of disability specific policies; however, the implementation of these practices was not always adequate (sakellariou, malfitano & rotarou 2020). challenges identified with the implementation of such policies include discrepancies between national and local government policies, and the benefits not reaching all people with disabilities because of structural barriers (sakellariou et al. 2020). these findings highlight the importance of not only articulating disability inclusive policies but also ensuring implementation and equity within communities of people with disabilities (sakellariou et al. 2020). a study conducted in four west african countries also found that the governments’ efforts did not adequately address the needs of people with disabilities in the pandemic even though some efforts from these governments were recorded (aboagye et al. 2022). similar to the south american study, people with disabilities experienced structural barriers such as being unregistered with government disability agencies (aboagye et al. 2022). disability inclusive policies are even more crucial for people with disabilities in lmic countries, particularly in africa, where health systems are strained and under-resourced. so far research that examines african governments’ health system responses in a holistic way is scarce. aside from the study performed by aboagye and colleagues of four west african countries (2022), there are no published holistic examinations of broader health system and policy responses from this context. the majority of available studies focus on specific aspects and experiences of people with disabilities, such as barriers to accessing health services, while there is a paucity of research about underlying notions in policies that create and reinforce these barriers. against this backdrop, the authors conducted a scoping review on the overview of the health system government responses in relation to disability considerations in africa during the covid-19 pandemic from march 2020 to december 2022. the specific question asked was ‘how disability inclusive were the health systems in africa in their covid-19 pandemic responses from march 2020 to december 2022?’. although the state of national disaster was called off in march 2022, the authors envisioned that there may still be literature published until december of the same year, hence they extended the timeline. methodology the authors conducted a scoping review of peer reviewed literature and grey literature on health responses to covid-19 across all african countries, informed by arksey and o’malley’s methodological framework (2005) and levac, colquhoun and o’brien (2010), and is reported according to the preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (prisma-scr) (moher et al., 2009) (see figure 1). a scoping review is better able to provide a sense of breadth and depth of a body of research or field and was thus found appropriate to answer the question in this study. the objectives of the scoping review were four-fold: to summarise and map available peer-reviewed literature from march 2020 to december 2022 on the response of health systems in africa to synthesise and describe the reported responses across countries using the un and who action guidelines for governments to identify gaps within the health system responses in africa to make recommendations for future pandemic responses in africa. figure 1: prisma flow diagram of the scoping review process. searching peer reviewed literature a systematic search was conducted on 10 databases (pubmed, scopus, web of science (social sciences citation index), africa-wide information, prospero, eric, medline, cinahl, psycarticles, and academic search premier). the peer reviewed literature search was run in english and the parameters were march 2020 to december 2022. relevant medical subject headings (mesh) terms and keywords were developed and identified in collaboration with a librarian based on a preliminary examination of the literature and previous reviews conducted on related topics. terms were grouped into four themes using peco, namely population (all people with disabilities), exposure (covid-19 pandemic including covid-19 vaccines), context (africa), outcomes (health system responses, disability considerations, disability accommodations and disability inclusive responses). the population and location terms were based on recent campbell collaboration search strategies for evidence gap maps on disability inclusive development in lmics. the first run of searches was performed in june 2022 and a re-run was completed in january 2023. the full search strategy is available from authors upon request. studies were included if they described any type of healthcare government responses or measures to covid-19 for persons with disabilities, for example, accessible public health information and communication, protective measures against covid-19, accessibility to services, reasonable accommodations, allocation of scarce medical resources, and mental health interventions inclusive of persons with disabilities. studies that described experiences of people with disabilities in relation to these government health responses were also included. the search included all types of studies and articles addressing any group of, or all types of disabilities. searching for grey literature evidence in the form of grey literature was included through a review of country pandemic plans and reports. government websites across all african countries were searched to identify and download existing country covid-19 plans and reports. the grey literature search was also run in english. search parameters included technical research reports and country plans that described any type of government healthcare responses or other measures regarding covid-19 for persons with disabilities (e.g., accessible public health information and communication) that were published or promulgated between march 2020 and december 2022 in the different african countries. this included any considerations or accommodation in relation to healthcare targeted at people with disabilities by governments across all african countries. coronavirus disease 2019 legislation, policy documents, and reports from the non-governmental sector (ngos) were excluded but addressed in a separate study. studies pertaining to other systems or ministries than health were also excluded from the review. where no full text was available of original research, reviews, meta-analyses, and conference abstracts or posters, studies were excluded from this review, as well as studies published before or after march 2020 and december 2022. studies published in languages other than english were excluded as the review team had limited ability to undertake analysis in other languages. study screening, selection, and extraction all search results were uploaded onto rayyan.ai, a software package used to organise and conduct reviews. duplicates were removed before first screening of titles and abstracts, which was performed on rayyan.ai by three reviewers (l.m., y.n., l.n.) independently and conflicts were resolved by the third reviewer (l.n.). excel was further used for bibliographic management, screening, coding, and data synthesis. the reasons for exclusion of articles were recorded. this was followed by a full text screening of all included titles, which was also performed by all three reviewers. further articles were excluded after full text screening and all reviewers agreed. reference lists of articles identified by the search were also examined for eligible publications. a data extraction sheet was developed to record information from reviewed articles, including year of publication, type of literature, target population, scope, and location. the authors further mined for information relevant to the key questions of the review as well as the predetermined themes. three reviewers performed data extraction. a short summary of each article was produced containing information about the responses, which are reported on. analysis a deductive thematic analysis was performed to provide an overview of different types of healthcare responses, and of how persons with disabilities were prioritised or considered in responses. a thematic framework (see table 1) was derived from the who brief on disability considerations during the covid-19 outbreak (2020) as well as from the un brief on disability inclusive responses to covid-19 (2020), and the documents were analysed according to nine themes. descriptive analysis explored common themes across the different bodies of evidence to determine similarities, differences, and gaps in the inclusion of persons with disabilities in actions across different healthcare contexts and governments, as well as perceptions of disability inclusive responses during the covid-19 pandemic across countries. table 1: thematic framework: key elements for disability-inclusive response to covid-19. ethical considerations primary data collection and informed consent procedures were not applicable in this review, but ethics approval for the broad study was obtained from stellenbosch university social, behavioural and education research ethics committee (rec: sbe), project number 15244. institutional documents that are part of grey literature are publicly available. findings the results of the search and screening processes for both bodies of literature are presented in the prisma flow chart (see figure 1). the first search produced 2903 peer reviewed articles and 18 country reports for screening. after titles and abstracts were screened, 2882 articles as well as 15 non-english language country reports were excluded. the full text of the remaining 24 articles was assessed, and 16 of these were excluded because of not being health-related or not having a disability focus. the reference lists of full text articles were searched for further eligible literature, and two (n = 2) articles were included from this search. ten peer-reviewed articles and three country reports (grey literature) were, thus, included in this review. peer-reviewed literature reported studies performed in 10 african countries, with south africa, ghana, uganda, cape verde, kenya, and nigeria each represented in two or more studies. three studies reported qualitative research, two used mixed methods, and another two reported literature reviews. the remaining studies comprised two opinion articles, a policy analysis, and one article that reported following a narrative approach to identifying country covid-19 responses. no quantitative studies were found and included in the review. the included grey literature reported on both qualitative and quantitative data and comprised reports from three african countries. these were all from southern african countries, as other country reports identified were not accessible in english. findings were primarily reported in descriptive form and reflected analyses of how disability-inclusive african government responses were to the covid-19 pandemic. it was interesting to see that the included articles were pointing out gaps and challenges and offered suggestions and recommendations, rather than documenting what the governments are doing in response to shortfalls. table 2 presents the government responses in each country. table 2: african countries’ healthcare system responses to covid-19. table 2 (continues…): african countries’ healthcare system responses to covid-19. table 2 (continues…): african countries’ healthcare system responses to covid-19. the aim of this review was to examine how inclusive government health systems’ responses were of persons with disabilities during covid-19 in african countries. all but two of the included countries reported measures to ensure that public health information related to the pandemic was accessible to persons with disabilities. most notably, sign language interpretation was used to make visual broadcasting about covid-19-related information and precautions accessible to people with disabilities in six countries (aboagye et al. 2022; swanwick et al. 2020; wickenden et al. 2022), and in south africa, services using digital and broadcast technologies were classified as essential services (wickenden et al. 2022). a nigerian resource alluded to measures for people with visual impairment in the domain of preventing contagion with the virus, but with no further information about these measures reported (lugo-agudelo et al. 2022). the zambian government included people with disabilities as one of the at-risk groups in their planning of key activities for communication and community engagement during the pandemic (republic of zambia 2020). six countries intensified protective measures against covid-19 through, specifically, issuing regulations for the provision and utilisation of personal protective equipment (ppe). nigeria, tanzania, ghana, and cape verde included the provision of ppe to people with disabilities in their documented responses to the pandemic (aboagye et al. 2022; mohamed et al. 2022). researchers reported, however, that not all tanzanians with disabilities received face masks and sanitiser (mohamed et al. 2022). while not directly from the ministry of health, the south african department of basic education published health-related guidelines for the prevention of the spread of the virus during the phased return to school for learners with different types of impairments (wickenden et al. 2022). only south africa appeared to have issued safety precautions related to persons with specific impairments, namely visual impairments (lugo-agudelo et al. 2022). although access to healthcare is a human right, barriers to equitable healthcare remain one of the major challenges to people with disabilities (badu, agyei-baffour & peprah opoku 2016). the covid-19 pandemic intensified the nature of challenges that people with disabilities experienced in accessing healthcare services. five countries in this review responded in varying degrees to this principle, while other countries did not reflect any specific responses to ensuring healthcare access for persons with disabilities. zambia and nigeria grouped citizens with disabilities together with other vulnerable groups, giving them access to social and humanitarian means in these countries (presidential task force 2021; republic of zambia 2020). no further information was available, however, about the operationalisation priority measures for people with disabilities. from this review, most documented evidence of measures to ensure access to healthcare services for persons with disabilities during the pandemic came from south africa. here, regulations issued by the minister of social development that pertained to persons with disabilities may have indirectly promoted their access to healthcare services. the ministry, for example, extended the validity of medical reports, needed for the renewal of disability grants, from 3 to 6 months during the pandemic, and permitted live-in staff who provided care to persons with disabilities to remain in service during lockdown periods as providers of essential services (wickenden et al. 2022). temporary disability grants, therefore, that would have lapsed and needed to be reapplied for during lockdown periods, were extended until december 2020 without interruption of payments (wickenden et al. 2022). south africa and kenya increased social grants to persons with disabilities during the pandemic. in kenya, the government implemented the persons with severe disability cash transfer program for 2 months, with each beneficiary receiving $40/month (ressa 2021). hlongwane et al. (2022) reported that the disability grant paid to south africans with disabilities was topped up by the government with r350 per month (22 us dollars at the time) initially for a period of 6 months. another south african social grant, a caregivers allowance, was made available from june 2020 to october 2020 to caregivers of children, but not to those who cared for persons with disabilities (wickenden et al. 2022). reviewed documents did not report regulations pertaining new disability grant applicants and how such applications were processed during lockdown restriction periods and thereafter. furthermore, the south african minister of communications and digital technologies classified services related to digital and broadcasting technologies as essential services in combatting the spread of covid-19 (wickenden et al. 2022). the ministry directed that electronic communications and broadcast licensees support the health sector by, for example, zero-rating department of health covid-19 sites as well as calls to the department’s national helpline (wickenden et al. 2022). the same ministry enabled pharmacies to deliver medical products at home during various levels of lockdown, which included but were not specific to persons with disabilities (wickenden et al. 2022). some evidence suggested that the south african government engaged disability organisations in working groups and committees who were tasked with developing healthcare responses to the pandemic. (mckinney et al. 2021). no evidence was available about the implementation of recommendations from disability stakeholders. the pandemic brought a global sense of panic and heightened anxiety and even in the early days of the crisis the emergence of mental health concerns was noticed by health authorities. only two countries in this review appeared to have included persons with disabilities to some degree in their healthcare responses in mental health interventions during the pandemic. the south african minister of social development instructed that support from caregivers in residential facilities and/or homes during lockdown periods should include psychosocial assistance to those infected with or affected by covid-19 during lockdown periods (wickenden et al. 2022). the same ministry also stipulated that persons with disabilities who required psychosocial intervention should have access to prescribed medication and counselling as a minimum requirement during the crisis intervention period (wickenden et al. 2022). it is noticed that these directives were not set by the government department who is primarily responsible for mental healthcare services, and as such, these were issued to the department of health rather than to service providers directly. cape verde’s country report stipulated the provision of counselling services to persons with disabilities as a response during the pandemic, including assessing this group’s ‘mental wellness’ (aboagye et al. 2022:7). five reviewed countries showed evidence of efforts to ensure continuity of support services to persons with disabilities during the pandemic. in these countries, caregivers were allowed to continue with service provision to people with disabilities under lockdown restrictions (aboagye et al. 2022; wickenden et al. 2022). additionally, in senegal, networks were formed in communities to identify persons with disabilities, monitor their well-being, and offer support (aboagye et al. 2022), and south africa issued regulations about access to personal assistance for persons with disabilities at various facilities, such as service points and supermarkets (wickenden et al. 2022). none of the included countries reported measures to reasonably accommodate persons with disabilities in relation to public health services and restrictions on movement in public spaces. furthermore, documents included did not address how countries protected people with disabilities from discriminatory decisions around medical resource allocation, apart from zambia’s inclusion of persons with disabilities in vulnerable groups while setting priority plans during the pandemic (kapiriri et al. 2022). no further information was found in the zambian document, however, of how this inclusion realised for persons with disabilities. south africa was the only country that mentioned measures to protect people with disabilities from increased social exclusion through issuing regulations for continued availability of caregivers in residential facilities and home-based environments during lockdown restrictions (wickenden et al. 2022). continued psychosocial support services and access to prescribed medications and counselling were also mentioned in regulations to mitigate social exclusion risk for this group. unrelated to healthcare services, the south african minister of justice and correctional services issued regulations that permitted support persons to be available in courts, court precincts and justice service points to assist persons with disabilities (wickenden et al. 2022). in addition, this ministry stated that inmates (including people with disabilities) could be referred to external health facilities only if medical emergencies occurred, circumstances under which access to healthcare may have been denied to inmates with long-term physical and/or mental health disabilities (wickenden et al. 2022). only south african evidence included the protection of people in residential settings in the documents reviewed. the minister of social development stated that a satisfactory assessment from a social worker should be a prerequisite for releasing persons with disabilities from department of social development-operated facilities into different places of accommodation (wickenden et al. 2022). this review did not find evidence of policy considerations or implementation pertaining to persons with disabilities’ access to healthcare systems and services in remote areas during the pandemic. discussion the health and lives of persons with disabilities have been disproportionately affected by the outbreak of the novel coronavirus 2019 and the ensuant pandemic (united nations 2020). adversity created by this global crisis had even more severe marginalisation and disadvantageous effects for people with disabilities from lowand middle-income countries (mckinney et al. 2021). this review considered how countries on the african continent included persons with disabilities in the responses of their healthcare systems during the pandemic. the most consistent evidence found in this review was in the sampled countries’ promotion of access to public health information through the provision of sign language interpretation during visual broadcasts of covid-19-related information and precautions. although not all countries reported such inclusion measures, the ones who did may have mitigated the isolating effect of the pandemic for sign language users through their attention to alternative and/or augmented means of communication. the availability of and existing infrastructure to support sign language interpretation may have been seamlessly applied for the use of pandemic information-sharing because of these services having been operational before the crisis. promoting access through other means, however, that accommodated the entire range of communication impairments, was not stipulated and may have resulted in exclusion of persons with disabilities, and also where broadcasting and digital accessibility were limited or unavailable. persons with disabilities did not have equitable access to healthcare and health information prior to covid-19 (mckinney et al. 2021). evidence from both high income and lowand middle-income countries confirms that people with disabilities are disadvantaged compared with those without disabilities in accessing health services (reem mutwali & ross 2018). in africa, people with disabilities navigate challenges of transport and distance, cost, waiting times, and physical accessibility of facilities, among others, resulting in lower overall utilisation of health services (reem mutwali & ross 2018). several authors have reported on the exacerbated challenges faced by persons with disabilities during covid-19 as a result of governments’ failure to consider disability inclusion in their disaster response and disaster management plans (jesus et al. 2021; mckinney et al. 2020; sakellariou et al. 2020). overwhelmingly, the evidence from this review reflects that included countries proffered minimal or no policy guidelines or measures for including persons with disabilities in healthcare accessibility initiatives during the pandemic. where people with disabilities were highlighted or mentioned, they were often grouped together with other minority communities and subject to broad policy principles rather than targeted measures aimed at addressing their specific accessibility needs. none of the countries overtly addressed reasonable adjustments to health measures that would accommodate the needs of persons with disabilities during the pandemic, although some application of reasonable accommodation (ra) principles may have been included by planned actions, for example, by allowing carers of persons with disabilities to attend work under lockdown circumstances. reasonable accommodation refers to measures aimed at preventing generic prohibitions during the pandemic from inadvertently excluding and/or disadvantaging people with disabilities (un office of the high commissioner for human rights 2020) because of the presence of impairment. sakellariou et al. (2020) reported examples of ra measures employed in argentina and peru during covid-19, as allowing walks outside their homes for people with disabilities and their carers without requiring special permission to do so. in peru, people with disabilities were also given priority access to humanitarian supplies and all other resources from the state at all levels of public administration (e.g. water and food) (sakellariou et al. 2020). the absence of relevant reasonable accommodation measures found in this review would have compounded existing barriers to access and discriminatory practices. regulations issued by the south african government reflected some attempts to promote healthcare access for persons with disabilities during covid-19, but grassroot research reflected major challenges to accessing healthcare by this group during the pandemic (mckinney 2021). mckinney’s study found how access to therapy, assistive devices, and specialised care was limited or suspended under lockdown regulations, and how communication with healthcare staff was impacted when support persons for persons with hearing impairment were not allowed to accompany them into healthcare facilities (2021). her study continues to elaborate on several experienced barriers to healthcare access by south africans with disabilities, such as inaccessible transport to healthcare facilities, and inaccessible or unaccommodating vaccine procedures (mckinney 2021). the omission or under serving of persons with disabilities in healthcare extended to their exclusion from targeted mental health interventions during the pandemic and in its wake. mental health concerns during covid-19 related not only to care and intervention for persons with existing mental health conditions but also to health system planning to handle a ‘second pandemic’ of mental health crises as a result of the covid-19 pandemic (choi et al. 2020:340; kola et al. 2021). countries included in the review, furthermore, generally failed to plan for the protection of people with disabilities in residential settings, and the healthcare needs of persons with disabilities living in rural areas. rurality, in african countries that form part of the global south, is known to create an intersection with disability that intensifies the disadvantages and exclusion of this group in healthcare systems (ned et al. 2020). overall, evidence from this review confirms that sampled african states failed to effectively include the needs of persons with disabilities in health system responses to the emergency of covid-19. where inclusions were specified, the implementation of these fell short and left persons with disabilities more exposed, vulnerable, and excluded from healthcare than non-disabled counterparts. limitations of this review grey literature from african countries, that may have been relevant to this scoping review, was not included when only available in languages other than english. this may have limited the reflection of evidence to report on from non-english speaking african countries. the inclusion of grey literature, however, served only to expand on and supplement the peer review articles that were eligible for inclusion because of the limited number of articles found. implications and recommendations sakellariou and colleagues make the important point that legislation and policy afford legal recognition and protection of the rights of people with disabilities, even if they do not always prevent discrimination against this group (2020). as such, the significance of inclusive laws, policy frameworks, and regulations to direct health system responses during emergencies should not be underestimated, and gaps in such laws need to be addressed. comprehensively inclusive guidelines exist in the global arena to direct disability-related policy and implementation efforts, for example, the un policy brief for a disability-inclusive response to covid-19 (united nations 2020), unesco’s reference report on policy responsiveness during covid-19 and best practice guidelines (unesco 2021a; 2021b), and the united nations’ guidance brief on protecting the rights of persons with disabilities during covid-19 (un office of the high commissioner for human rights 2020). the who (2022) suggests governance as one of the strategic entry points for disability inclusion in health systems. further and renewed efforts to incorporate such guidelines by african union and united nations member states should be launched and sustained in preparation for greater and targeted policy inclusiveness of the health needs of persons with disabilities under non-emergent and emergent circumstances. regulations that are promulgated in the context of emergencies or disasters must be interpreted in order to be applied by those who implement them (wickenden et al. 2022). it would follow that service providers’ knowledge and understanding of disability inclusion are crucial to the effective implementation of inclusive healthcare policies in practice. this review has shown that, although governments in some instances heeded the principles of including and collaborating with organisations of people with disabilities to address and plan appropriately inclusive emergency responses, these occasions were insufficient and took place too late for effective implementation to run its course. moreover, no evidence of outcomes or monitoring and evaluation reporting is available to ascertain what impact these deliberations had on healthcare inclusion, if any. government and policymakers should therefore strengthen and incorporate collaborative relationships with organisations that represent people with disabilities to consistently influence planning forums at regional, local, and national government levels during and beyond emergency contexts. access to public health information should now move beyond governments’ standard response to communication impairments (such as sign language interpretation during visual broadcasts) and incorporate universal design principles to bolster sophisticated communication means in all ‘sensory channels’ (wickenden et al. 2022:13). as such, attention should be paid to creating access to information for, for example, persons who do not read, or who require texts or messages to be shortened or simplified for comprehension. conclusion from this review of a sample of african countries’ health system responses to the inclusion needs of persons with disabilities during the covid-19 pandemic, it is concluded that an overall poor inclusion response was stipulated. countries appear to have been most responsive in terms of creating access to health information, and most neglectful in stipulating reasonable accommodation measures to equalise health system access and services to persons with disabilities. this review shows areas of concern and priorities where governments should develop health inclusive efforts in existing and future health systems that could address the needs of persons with disabilities as equal citizens during and beyond health emergencies. acknowledgements the authors would like to acknowledge the librarian, alvina matthee, for assisting with the search. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.n. was the principal investigator and conceptualised the research methodology and first draft of the article. l.n., y.n. and l.m. conducted data collection and l.n. performed the analysis of data together with m.e. all authors contributed to the original draft preparation and reviewing of the article, and m.e. and l.n. completed the final draft and editing. all authors have read and agreed to the published version of the manuscript. funding information this study is funded by the mrc sir grant under l.n. as principal investigator. data availability the full search strategy and raw data are available from 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socio-economic, wellbeing and human rights related experiences of people with disabilities during covid-19 lockdown in south africa, institute of development studies, brighton. https://iris.who.int/bitstream/handle/10665/332015/who-2019-ncov-disability-2020.1-eng.pdf?sequence=1 world health organization, 2020, disability considerations during the covid-19 outbreak, viewed 23 january 2023, from https://iris.who.int/bitstream/handle/10665/332015/who-2019-ncov-disability-2020.1-eng.pdf?sequence=1. world health organization, 2022, global report on health equity for persons with disabilities, world health organization, geneva, viewed 19 june 2023, from https://www.who.int/publications/i/item/9789240063600. abstract introduction research methods and design results on influence of behaviour modification practices on english language reading abilities discussion conclusion acknowledgements references about the author(s) pamela a. ooko faculty of education, teachers service commission of kenya, mombasa, kenya peter j.o. aloka division of studies in education, wits school of education, university of the witwatersrand, johannesburg, south africa citation ooko, p.a. & aloka, p.j.o., 2021, ‘using selected behaviour modification practices to enhance reinforcement of reading abilities among dyslexic learners in kenya’, african journal of disability 10(0), a707. https://doi.org/10.4102/ajod.v10i0.707 original research using selected behaviour modification practices to enhance reinforcement of reading abilities among dyslexic learners in kenya pamela a. ooko, peter j.o. aloka received: 10 feb. 2020; accepted: 13 nov. 2020; published: 29 jan. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: dyslexic learners have difficulties in accurate and fluent word recognition and poor spelling and decoding abilities. objective: the present study investigated the use of selected behaviour modification practices to enhance reinforcement of reading abilities amongst dyslexic learners in primary schools in kenya. methods: the solomon four research design was adopted. a sample size of 229 dyslexic learners in four selected schools was obtained using purposive sampling technique. the tools used were the bangor dyslexia test and a short reading comprehension test. internal validity of the constructs was tested using the kaiser–meyer–oklin measure of sampling adequacy (kmo index) and the bartlett’s test of sphericity. the reliability of the questionnaires was ascertained using cronbach’s alpha and internal consistencies of 0.673–0.807 were reported. results: the findings reported a statistical significant difference between pre-test and post-test scores of the experiment group 1, t (48) = –15.059, p < 0.01, implying that a significant effect was found in the use of behaviour modification strategies in improving learner english language reading skills. the regression model explained 54.7% (r2 = 0.547) of the variability in the level of english language reading abilities amongst primary school learners with dyslexia. conclusion: the study concludes that coaching behaviour modification practice had the highest influence on english language reading abilities as compared to prompting, shaping and modelling practices. the study recommended training of teachers on the use of behaviour modification practices to improve dyslexic learners’ reading ability. keywords: selected; behaviour modification practices; enhancement; reinforcement; reading abilities; dyslexic learners; kenya. introduction dyslexia is a learning disability with a neurobiological origin and is characterised by difficulties with accurate word recognition, poor spelling, and decoding abilities. these difficulties result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction (lyon, shaywitz & shaywitz 2003). the international dyslexia association (ida 2017) described it as a specific learning difficulty in which learners have problems with poor spelling and decoding abilities. dyslexia is a member of the family of learning disabilities; in fact, reading disability is by far the most common learning disability, affecting over 80% of those identified as learning disabled (lerner 1989; ooko, aloka & koweru 2019). on the contrary, olagboyega (2008) defined dyslexia as a complex neurological condition which is constitutional in origin and may affect oral language skills, motor function, organisational skills and numeracy. according to ondieki (2013), dyslexia is an impairment that interferes with fluency and accuracy when a person is reading and spelling words. the british dyslexia association (2013) defines dyslexia as a specific learning difficulty that interferes with the development of the ability to read and write. from the kenyan context, the kenya dyslexia organization (kdo) concludes that dyslexia is a neurologically based language deficiency which interferes with the acquisition and processing of language (ida 2017). from the above definitions, dyslexia is a learning difficulty that includes reading, numeracy, motor and writing functioning amongst learners in schools. in the present study, the authors have adopted the definition of dyslexia by the kdo. the primary symptoms of dyslexia are inaccurate or slow printed word recognition and poor spelling problems that, in turn, affect reading fluency, comprehension and written expression (moats et al. 2010; ooko, aloka & koweru 2019). the ida (2017) reiterate that the symptoms of dyslexia include confusion with words that start with the letters b, p, d or g, memorising numbers and words, slow and laboured comprehension, and problems with arithmetical calculations and remembering days of the week in sequence or letters of the alphabet. pirttimaa et al. (2015) reiterate that dyslexia is mainly caused by problems in phonological coding and the persistence of poor phonological skills. this idea is supported by elbro and scarborough (2004), who state that problems with phonological decoding and other challenges in phonological ability seem to be the core deficit in dyslexia. the prevalence of dyslexia in various countries has been reported, such as 1% of the egyptian, 10% of the south african (iwan 2013) and 20% of the ugandan population. in kenya, the prevalence of dyslexia is estimated to be about 10% (symthe et al. 2004), as cited in cheruiyot (2015). the dyslexic condition affects reading ability amongst learners in school, yet the ability to read is a necessary tool for everyone both in and out of school. moreover, reading is important for the daily functioning of an individual. in schools, teachers use various skills to introduce reading amongst learners (marima 2015). boets and de smedt (2010) reiterate that dyslexics are slower at grasping and less efficient when dealing with single-digit arithmetic or when identifying new words with sound-letter representations than typically developing students. they also find difficulty in analysing sounds of spoken words and putting them together with their respective letters as they read them. students with dyslexia may harbour feelings of failure as a result of their dyslexic condition (dyslexia association in australia 2014). runo (2010) postulates that learners who score poorly in the wordlist and reading passage do not fare well academically in other subjects in primary schools. the reviewed studies showed that students’ reading abilities attract attention of scholars in kenya and in the global context. in kenya and other parts of africa, not many studies have been conducted on behaviour modification methods to improve dyslexics’ reading ability. even though many studies have been carried out to strategise on how to remediate the reading ability of dyslexics, the problem is still unsolved. in addition, the relevant studies reviewed indicate that there are inconsistent findings about the extent to which behaviour modification strategies like prompting, shaping, coaching and modelling influence students’ reading behaviour. the purpose of this study was to determine the influence of selected behaviour modification practices on enhancement of reading ability amongst dyslexic learners in selected public primary schools in kenya. theoretical framework according to the dyslexia association in australia (2014), teachers need special training to enable them to accurately identify students who are struggling with reading and written language before attending to them using the special behaviour modification skills to improve their reading skills. this research was informed by skinner’s theory of reinforcement. the theory was founded by skinner (1957), as cited in skinner (2011). skinner’s reinforcement theory attempts to explain how behaviours of organisms are acquired and modified to improve a certain behaviour. skinner believed positive reinforcement was more useful in modifying and reinforcing an already existing behaviour than when punishment was used. this theory was relevant to this study because it shows how reinforcement can be used with behaviour modification methods to improve reading abilities. from skinner’s theoretical perspective, teachers can modify the reading ability of dyslexics by using behaviour modification practices such as coaching, shaping, prompting and modelling. neitzel and wolery (2010) define prompts as gestures, instructions, touches or things to make children correct responses independently. mcleod (2015) defined shaping practice as a progressive way of achieving a desired behaviour by repeating a behaviour several times. coaching can be defined as a means of transforming a research into a practice (bowgren & sever 2010). cunningham and allington (2010) define modelling as the technique of modifying reading ability by observing how teachers or models read the letters and their corresponding sound and then imitating the same. literature review literature on various behavioural reinforcement practices and their effectiveness exists. for example, in turkey, backhaus, jeske, poinstingl and koenig (2017) established that use of antecedent prompts was effective in transferring skills taught to young females. similarly, wong et al.’s (2016) study in the united states of america showed that the teachers’ conceptions of ‘nature of science’ improved significantly after two semesters of instruction. in new zealand, hayes (2010) found that prompting was effective in teaching autistic children. allenger’s (2015) study in the united states of america showed that there were no significant differences between students’ word productions and sentence lengths with the teacher’s writing prompts. in india, jeyasekaran’s (2014) study reported that there was a positive relationship between use of a visual, kinesthetic, auditory and tactile teaching method to improve the reading skill of children with dyslexia. fonger and malot’s (2018) study in the united states of america established that use of shaping was effective in teaching young children with autism (asd). mc clurg and morris (2014) in the united states of america reiterate that rewards are effective in motivating students to work hard. in an experimental study with dyslexic learners, ooko, aloka and koweru (2019) reported that there was a statistically significant positive relationship between shaping and reading abilities (r2 = 0.109). majcharazak, wagner and yatez (2013) established that shaping is affected by three knowledge resources, which include adding domain knowledge to a wiki. heineke (2013) agreed that coaching can lead to improved teacher learning. dusenbury et al. (2010) found that coaching was effective in enhancing the quality of implementation of drug abuse prevention programmes. in the united states of america, joseph et al. (2015) revealed that a variety of strategies were used to teach self-questioning to students. in another study, loh (2009) found that there was a significant positive relationship between teacher coaching and reading outcome. in the united kingdom, holliman et al. (2010) established that prosodic sensitivity is important in models of literacy development. piper and zulkowski (2015) found a statistically significant relationship between coaching and reading effect. in kenya, chacha’s (2018) study indicated that use of picture prompts was useful in the teaching of oral skills in prescholars. on the contrary, ambrose and cheong (2011) in malaysia showed that the clay modeling program does improve the reading behaviour of dyslexic children. similarly, in germany, schukajilow, krug and rakoczy’s (2015) study reported that prompting students to find multiple solutions does not improve their performance directly. maguire’s (2015) study in new zealand showed that the video self-modelling intervention did not influence the participants’ reading habits. according to cassidy (2015), dyslexic learners can reach their full potential if remediated early as dyslexia is not a disability. in response to this, whole-word reading and phonetic methods have been employed to make a learner master reading in kenya (marima 2015). the phonetic method involves reading the sounds of letters and matching them to what each letter stands for. however, little has been realised on the efficacy of the phonetic method. according to chitiyo and wheeler (2009), behaviour can be modified by changing classroom routine and incorporating strategies such as shaping, modelling, coaching and reinforcement to improve behaviour. dutta and bhakta (2016) reiterate that behaviour modification is a way of using operant conditioning to replace undesirable behaviour with more desirable behaviour. the association between dyslexia and behaviour issues cannot be underscored, hence the need for behaviour modification to cater for such learners (hulme &snowling 2011). in kenya, there are schools to cater for those learners with emotional and behaviour issues in approved schools, although the schools do not cater to the dyslexic learners (muthee, murugami &tekle 2015). it is estimated that about 10% of schoolgoing learners in kenya could have dyslexia, although no official statistics are available for all regions in the country (ooko, aloka & koweru 2019). generally, there is lack of research in the area of dyslexic learners in kenya and possible interventions are also not documented from the available research. one of the recent available studies by ooko and kaluyu (2016) found out that there is a significant weak positive relationship between writing dyslexia and academic performance amongst learners in upper primary public schools in changamwe sub-county, kenya. the study by ooko and kaluyu (2016) recommended a formulation of education policies catering to screening, teaching, learning, assessment and examination of dyslexic pupils in public primary schools in kenya. thus, the present study made follow-up to develop an intervention to enhance reading abilities amongst dyslexic learners in primary schools. the findings of the present study are significant because they would add to the body of literature and also be used by policymakers to provide early intervention programmes for pupils with dyslexia. the present study investigated the use of selected behaviour modification practices to enhance the reinforcement of reading abilities amongst dyslexic learners in primary schools in kenya. the research hypotheses of the study are stated as follows: ho:1 there are no significant differences in pre-test and post-test scores on english language reading ability between the dyslexic learners in experimental and control groups. ho:2 there is no significant effect of selected behaviour modification practices to enhance reinforcement of reading abilities among dyslexic learners. research methods and design study approach and design the study was based on a quantitative research paradigm. the paradigm was adopted because it helped to make comparisons (babbie 2010; creswell 2014) of the four groups to ascertain the effects of the intervention of behaviour modification techniques. specifically, the solomon four research design was adopted. according to solomon (1949), this is a randomised experimental design consisting of two treatments versus two control groups. the sample size was subdivided into four groups. in the first group (experimental 1) a pre-test was given to test the reading ability of the learners but there was no post-test. in the second group (control) a pre-test was given and a post-test to check if the intervention had an effect on their reading ability. in the third group (experimental 2) no pre-test was given; intervention was given and a post-test was given. in the fourth group (control) there was no pre-test or intervention but there was a post-test to check if they could read the words in the reading test effectively. this design was chosen for the study because it makes it possible to examine both the main effects of testing and the interaction of testing and treatment; thus it enabled to assess the presence of pre-test sensitisation (fain 1999). a diagrammatic representation of the solomon four research design is presented in table 1. table 1: diagrammatic representation of the solomon four research design. setting the study was carried out in four public primary schools in changamwe sub-county, kenya. the selected schools had a high number of dyslexic learners and had not been performing well in the final examinations (ministry of education 2017). the researcher carried out the research in the sub-county as some cases of dyslexia had been identified. the selected primary schools were mainstream and inclusive in nature, and the teachers had no structured interventions on literacy. the bangor dyslexia test was used to screen those confirmed to have dyslexic characteristics. the hardin simmons was used to rescreen learners identified with dyslexic characteristics. study population and sampling strategy the target population was 3267 learners and 54 english language teachers from seven schools. the researcher with the help of the 54 english language teachers selected a purposive sample of 229 dyslexic learners using the hardin simmons university (2014) dyslexia characteristics tool. the learners were in grades 5–8 and in age range from 10 to 15 years and consisted of both male and female learners. purposive sampling is the deliberate choice of an informant because of the qualities the informant possesses. this sampling technique was adopted because it helped the researchers decide the individuals who can and are willing to provide information by virtue of knowledge or experience (lewis & sheppard 2006). the researcher further screened the learners using a bangor dyslexia test (miles 1997) to make sure those whose poor reading ability was caused by other factors were not included in the final sample. intervention the intervention on behaviour modification was developed on four practices, namely, prompting, shaping, coaching and modelling. prompting was done by giving hints on letters or words where learners got stuck. for each word read correctly a tick was indicated in the score sheet. the learners were reinforced by use of praises and tokens when they performed the action correctly. for words which were prompted and they never managed to read correctly, a dot was used for marking on the scoresheet so that the following day they could be taken through the same process to read them. shaping was done by progressively introducing words and sentences to the learners. activities were picked from one part of the book dyslexia workbook by morris (2012) daily and presented to the learners. the teacher then demonstrated to them how to read the words before they were asked to read them out on their own and observations were made on what they can read in a scoresheet. this was done by chunking the words into smaller portions and training the learners to read them out in smaller chunks. where a learner had difficulty identifying the word from the list given, a ruler was used as a graphic organiser to help them locate the word in reference. coaching was done by the teacher acting as a coach and training the learners to read the words aloud. every day activities were picked from one part of the book labelled dyslexia workbook by morris (2012). the teacher then demonstrated to them how to read the words before they were asked to read them out on their own and observations made on what they could read in a scoresheet. modelling was done by a teacher acting as a model to demonstrate how to read out the words by mapping out the sounds and the letters that they represented. teachers carried out reading activities that were modelled to the learners. if a learner made a mistake in reading out the word aloud, the teacher corrected the learner by showing him or her how to read it out correctly and gave immediate feedback. everyday activities were picked from one part of the book labelled dyslexia workbook by morris (2012). the teacher then demonstrated to them how to read the words before they were asked to read them out on their own and observations made on what they could read in a scoresheet. research tools the bangor dyslexia test was used to screen those confirmed to have dyslexic characteristics. the hardin simmons was used to rescreen learners identified with dyslexic characteristics. the behaviour modification questionnaire had items on intervention for dyslexic learners, which included prompting, shaping, coaching and modelling. in addition, the researcher gave a short reading comprehension test to assess learners’ reading ability and a writing test to assess learners’ ability to organise ideas. external validity of the questionnaires was ensured by piloting the instruments in one non-sampled school using 20 learners and 4 teachers. the internal validity results of bartlett’s test for sphericity were significant (p < 0.001, p = 0.000) and kaiser–meyer-hold olkin indexes were 0.730, 0.685, 0.674 and 0.819 for all >0.6 for prompting, shaping, coaching and modelling subscales of the questionnaire, respectively. reliability of the questionnaires was ensured by cronbach’s alpha method and all the sub-scales met the required level of internal consistency of reliability with cronbach’s alpha values ranging from 0.673 to 0.807. data collection permission to carry out the research was first obtained from the national council for science, technology and innovation in kenya. the instruments were pilot tested in one non-sampled school using 20 learners and 4 teachers. the researcher then sought consent from parents or guardians of the sampled dyslexic learners. the english teachers were trained for 1 month on behaviour modification practices and intervention practices. learners who exhibited dyslexic characteristics were then screened by the researcher using the bangor dyslexia test. the researcher subdivided the learners listed as dyslexics into four groups. the teachers helped in giving reading activities to the dyslexics to test the entry behaviour of the dyslexics for the pre-test scores. in one of the groups an intervention was given before the post-test. the trained teachers taught the dyslexic learners twice a week for 40 min a session for a period of 12 weeks using the interventions for the two experimental groups. after the intervention period, a post-test was given to the learners in two groups. data analysis descriptive statistics such as mean, frequencies, percentages and standard deviations were used to analyse the data. in addition, inferential statistics such as t-test, pearson’s product moment correlation and regression analyses were used to analyse data. shapiro–wilk’s test (s–w) was used to interpret the normality of the variables for small and medium samples up to n = 2000 (creswell 2014). it was evident that all the other variables followed normal distribution given that there were no statistically significant differences noted in any of the variables with their corresponding normal scores. therefore, pearson’s product moment correlation and regression analysis were used in the analysis. ethical consideration this study was approved by the national commission for science technology and innovation in kenya. the ethical clearance permit number is nacosti/p/19/5933/27531. consent was sought from the parents before screening of the learners was done. the parents then signed the letters of informed consent and returned them to the school before the learners participated in the study. the learners’ real names were not revealed to ensure anonymity, whilst those taking the bangor test were allowed to opt out voluntarily if they did not want to participate in the study. the interventions were carried out in classes to ensure confidentiality. results on influence of behaviour modification practices on english language reading abilities the study investigated the influence of selected behaviour modification practices on reading abilities amongst learners with dyslexia in public primary schools. age distribution of the respondents information on the age distribution of respondents was sought and the results are presented in figure 1. figure 1: age distribution of the respondents. the findings of the study show that the majority of the learners who took part in the survey were aged between 12 and 13 years; this was not surprising because although the study targeted learners from grades 5 to 8, most of the sampled learners were in grades 6 and 7. in kenya, learners in these classes are mostly aged between 12 and 13 years. however, other age groups were also represented in the study. differences in english language reading ability between the experimental and control groups the study examined differences in pre-test and post-test scores on english language reading ability between the dyslexic learners in the experimental and control groups. to achieve this, a paired sample t-test was used to determine the difference in english language reading ability between the experimental and control groups. the different combinations of pre-tested and un-pre-tested groups with treatment and control groups allowed the researcher to ensure that confounding variables and extraneous factors did not influence the results on english language reading ability. four groups of learners were considered and were labelled 1, 2, 3 and 4, respectively. out of the four groups, group 1 and group 3, the experimental groups, were given treatment by training them on behaviour modification skills. on the contrary, group 2 and group 4 were not treated but only received the traditional teaching of english language reading. however, group 1 and group 2 were pre-tested before and post-tested after, whereas group 3 and group 4 were only post-tested. the results in table 2 show the descriptive statistics analysis. table 2: descriptive statistics of the scores of the four groups. from table 2, it is evident that the highest mean score recorded was 33.1 (sd = 8.1) in the post-test reading by group 1 learners who received special treatment on behaviour modification strategies after a pre-testing. it was followed closely by the mean score of group 3 learners, who received treatment but were post-tested without pre-testing, at 32.4 (sd = 7.9) in a post-test examination. the least score recorded was pre-test results (n = 54, m = 24.13; sd = 9.2) for group 2 students, those who did not receive any special treatment on behaviour modification strategy. figure 2 further shows the relative difference in mean scores of the various groups. figure 2: mean scores in performance in english language reading. it is evident from figure 2 that groups that received treatment reported relatively higher abilities in english language reading than their counterparts, who did not receive treatment. however, to investigate whether there is any statistically significant influence of behaviour modification strategies in english language reading abilities, three different steps involving the use of t-test were applied and findings were compared. table 3 shows a comparison between the post-test scores attained by group 3 and group 4 learners. table 3: paired samples test. the results in table 3 show paired sample t-test investigating solution with the post-test only design with non-equivalent control groups. from the results, it can be concluded that there is a significant difference between the experimental group (group 3) and control group (group 4), (t (48) = 3.438; p = 0.001 < 0.05). given that the difference is statistically significant at 5% level, it was concluded that the behaviour modification strategy is effective in improving english language reading abilities amongst the primary school learners. however, it is not known whether the existing difference in english language reading abilities is exclusively because of use of behaviour modification strategies or any other superseding variable that is not included in the survey. therefore, the study further explored solution with the two control group design, as refinement over the finding, as shown in table 4. table 4: paired samples test: solution with the two group control group design. from the results in table 4, a paired sample t-test on pair 2 suggests that there was no difference established between before and after values in the control group (t [53] = –1.321, p = 0.192 [ns]), but a test on pair 1 reveals that there is significant difference (t [48] = –15.059, p < 0.001) between the pre-test and post-test score of the experiment group, which means a significant impact of treatment was established on the experimental group. equally, test 4 further confirms that there is significant difference at 1% significant level between the experiment group post-test (group 1) and control group post-test (group 4) (t [48] = 3.263, p = 0.002). in addition, pair 3 suggests that the randomisation process was successfully applied to get samples for the experimental and control groups. this was implied by the fact that there was no significant difference (t [48] = 435, p = 0.666 [ns]) established between the experimental group pre-test (group 1) and control group pre-test (group 2). hence, assuming that pre-testing has no effect on post-test results, it can be taken that the use of behaviour modification strategies is effective in improving english language reading skills amongst primary school learners. however, there may be some kind of effect of pre-testing on post-test scores because the mean difference increased from –8.245 to 6.735 from pair 1 to 4. this was confirmed through the use of solution with the four control group design, whose results are shown in table 5. table 5: paired samples test: solution with the four control group design. from table 5, a paired sample test for pair 2 suggests that there was no statistically significant difference in reading ability found between before and after values in the control group, control group pre-test (group 2) and control group post-test (group 2) (t [53] = –1.321, p = 0.192 [ns]). on the contrary, test results for pair 1 reveal that there is statistically significant difference at 1% significance level between pre-test and post-test scores of the experiment group 1 (t [48] = –15.059, p < 0.01)], implying that a significant effect was found in the use of behaviour modification strategies in improving learner english language reading skills. furthermore, from the test in pair 3 it was concluded that the randomisation process was effective during sampling of the experiment and control groups because no significant difference was found between control group pre-test and experimental group pre-test (p = 0.666). regression analysis model summary on selected behaviour modification practices and english language reading abilities the study also examined the effect of selected behaviour modification practices to enhance reinforcement of reading abilities amongst dyslexic learners. this was done by the use of multiple regression analysis, where all four behaviour modification practices were factored in the model. the multiple regression also provided information about the relative contribution of each of the variables that make up the model. each aspect of behaviour modification practices was evaluated in terms of its predictive power, over and above that offered by all the other behaviour modification practices. it enabled the researcher to know how much unique variance, in the dependent variable, each of the independent variables explained. this is shown by coefficients values in table 6. table 6: regression analysis model summary output: behaviour modification practices and english language reading abilities. in table 6, the variable for block 1 is group of the respondents (experimental or control), which was controlled for in the analysis, while block 2 represents the predictor variables (modelling, prompting, shaping and coaching) together with the control variable (respondent group). it is evident that the respondent’s group alone accounted for 10.9%, as signified by coefficient of r2 = 0.109, of the variation in the level of english language reading abilities amongst primary school learners with dyslexia. however, after the aspects of behaviour modification practices were included in block 2, it is clear that the model as a whole explained 54.7% (r2 = 0.547) of the variability in the level of english language reading abilities amongst primary school learners with dyslexia. r-square change (0.439) in block 2 indicates the additional amount of variance accounted for by the behaviour modification practices after that explained by the control variable (respondents group) was removed. this indicates that behaviour modification practices accounted for 54.7% (r2 = 0.547), translating to addition of 43.9% in the variability of in the level of english language reading abilities amongst learners with dyslexia after the effect of the respondents’ group has been statistically removed. the study further sought to develop a regression model for the relationship between the level of english language reading abilities and behaviour modification practices amongst learners with dyslexia amongst primary school learners. this model was appropriate because each of the explanatory variables was independent and non-mutually exclusive. table 7 shows the coefficient values of each aspect of behaviour modification practices: in this model: y = β0 + β1x1 + β2x2 + β3x3 + β4x4 + β5x5 + ε, where: y is english language reading abilities x1: group, x2: prompting, x3: shaping, x4: coaching, x5: modelling. table 7: coefficient output: behaviour modification practices and english language reading abilities. the predicated optimum level of english language reading abilities was presented by: 0.154 units – 1.927 x1 units + 0.512 x2 units + 0.294 x3 units + 10.774 x4 units + 1.384 x5 units + error. from the model presented in table 7, the coefficients indicate how much english language reading abilities amongst primary school learners with dyslexia varies with each practice when other behaviour modification practices are held constant. a learner who was treated on behaviour modification practices would perform better in english language reading abilities than the ones who were in the control group by 1.927 units. it emerged that coaching behaviour modification practice had the highest influence on english language reading abilities. this was reflected by the unstandardised coefficient, x4, which is equal to 10.774, meaning that for each one unit increase in coaching behaviour modification practice, there is an increase in english language reading abilities amongst the primary school learners of 10.774 units. on the contrary, shaping behaviour modification practice reflected the least effect on english language reading abilities. a unit increase in perceived behaviour control would only result in 0.294 units’ improvement in english language reading abilities amongst primary school learners. however, in general, it was concluded that the model was adequate to predict english language reading abilities amongst primary school learners as it accounted for a fairly large variability of 54.7% (r2 = 0.547). discussion the study investigated using behaviour modification practices to enhance reinforcement of reading abilities amongst dyslexic learners in kenya. the findings indicated difference between pre-test and post-test scores of the experiment group, implying that a significant effect was found in the use of behaviour modification strategies in improving learner english language reading skills. it was also concluded that the randomisation process was effective during sampling of the experiment and control groups because no significant difference was found between control group pre-test and experimental group pre-test. it was therefore concluded that the use of selected behaviour modification practices was effective in improving dyslexic learners’ abilities in the reading of english language. this finding agrees with altin, saracaloglu and boylan (2018), who established that reading comprehension instruction supplemented with traditional materials positively changed learners’ vocabulary knowledge and attitudes towards english lessons. similarly, kraft, blazar and hogan (2016) agreed that coaching led to improved instruction and achievement. hayes (2010) also concurred that prompting was effective in teaching autistic children. mims (2009) also reported that students increased the number of correctly answered comprehension questions during all three shared stories. aurah (2018) also agreed that use of metacognitive prompts had more positive effects than the conventional method of testing. this finding is further supported by skinner’s (2011) theoretical assertion that when a behaviour is strengthened it increases the chances and speed of acquisition of a new behaviour. in agreement, ooko et al. (2019) also indicated that there was a statistically significant positive relationship between shaping and reading abilities. on the contrary, choi et al. (2016) established that there was no statistically significant difference in reading score growth between experimental and comparison groups. similarly, bridge (2016) found that there was no significant difference in development of reading comprehension when two instruction methods were used. the implication of this finding is that teachers need to be trained on behaviour modification practices for enhancement of reading abilities amongst dyslexic learners. the study reported that coaching behaviour modification practice had the highest influence on english language reading abilities. however, shaping behaviour modification practice reflected the least effect on english language reading abilities. similarly, zoccolotti et al. (2014) agreed that orthographic decoding and integration of reading sub-components contributed significantly to the overall prediction of text reading fluency. ambrose and cheong (2011) also reiterate that the clay modeling program improves the reading behaviour of dyslexic children. davis et al. (2018) in the united states of america also agreed that coaching increased student reading achievements. furthermore, altin et al. (2018) contend that reading comprehension instruction supplemented with traditional materials positively changed learners’ vocabulary knowledge and attitudes towards english lessons. in addition, mosito et al. (2015) found a positive significant correlation between use of prompts and reading ability. on the contrary, loh (2009) disagreed that teachers do not coach reading. the finding that the use of the selected behaviour modification practices was effective in enhancing reading abilities amongst dyslexic learners agrees with skinner’s theoretical assertion that positive reinforcement is more useful in modifying and reinforcing an already existing behaviour. therefore, the four selected intervention techniques, namely, prompting, shaping, coaching and modelling, are effective positive reinforcers. the implication of this finding is that the ministry of education should train coaching behaviour modification to teachers in schools. the ministry of education should set up a learning support area in schools to help manage those learners with dyslexic conditions. it should also equip the learning support departments in the public primary schools with the latest strategies for handling dyslexia in classes. conclusion the study concludes that the behaviour modification practices model was adequate to predict english language reading abilities amongst primary school learners. the results were statistically significant and accounted for a fairly large variability in english language reading abilities amongst primary school learners. therefore, implementation of intervention using behaviour modification practices could enhance english language reading abilities of dyslexic primary school learners. it emerged that when other behaviour modification practices were held constant, coaching had the highest influence in english reading ability, followed by prompting and then modelling, while shaping behaviour modification was the least influential. it can be concluded that a learner treated on behaviour modification practices would perform better in english language reading ability than the ones not given the intervention. therefore, teachers in schools should be sensitised on handling dyslexic learners in their classes to offer appropriate intervention measures to help the dyslexic learners. moreover, teacher counsellors should include the parents of the dyslexic learners in strategising how to improve their social competencies and improve the welfare both in and out of school. one of the limitations that arose from the experiment is that there are differences amongst the public schools where the research was conducted and this could have brought slight differences in the efficacy of the behaviour modification intervention. however, this was addressed because there was known structured intervention literacy being practised in the selected schools; hence, the results could still be treated as accurate and generalisable. future studies could investigate the effectiveness of behaviour modification practices with longer time interventions. in addition, gender differences in the response to behaviour modification interventions could be explored. acknowledgements the authors have declared that no competing interest exists authors’ contributions p.a.o. was the principal author and project lead, supervision was provided by p.j.o.a. conceptualisation of the research idea and design, and literature review was done by p.a.o. the two authors identified key points for and from analysis and critically reviewed the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability statement raw data were generated at primary schools in changamwe sub-county, kenya. consolidated data that were used in this study are available from the corresponding author upon request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references allenger, m.s., 2015, ‘effects of teacher prompting techniques on the writing performance of 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zoccolotti, p., de luca, m., marinelli, c.v. & spinelli, d., 2014, ‘modeling individual differences in text reading fluency: a different pattern of predictors for typically developing and dyslexic readers’, frontiers in psychology 5, a1374. https://doi.org/10.3389/fpsyg.2014.01374 abstract introduction research methods and design results trustworthiness discussion limitations of study conclusion acknowledgements references about the author(s) christopher j. stanfill international society of wheelchair professionals, washington, d.c., united states jody l. jensen department of kinesiology and health education, university of texas at austin, united states citation stanfill, c.j. & jensen, j.l., 2017, ‘effect of wheelchair design on wheeled mobility and propulsion efficiency in less-resourced settings’, african journal of disability 6(0), a342. https://doi.org/10.4102/ajod.v6i0.342 original research effect of wheelchair design on wheeled mobility and propulsion efficiency in less-resourced settings christopher j. stanfill, jody l. jensen received: 11 nov. 2016; accepted: 01 may 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: wheelchair research includes both qualitative and quantitative approaches, primarily focuses on functionality and skill performance and is often limited to short testing periods. this is the first study to use the combination of a performance test (i.e. wheelchair propulsion test) and a multiple-day mobility assessment to evaluate wheelchair designs in rural areas of a developing country. objectives: test the feasibility of using wheel-mounted accelerometers to document bouts of wheeled mobility data in rural settings and use these data to compare how patients respond to different wheelchair designs. methods: a quasi-experimental, preand post-test design was used to test the differences between locally manufactured wheelchairs (push rim and tricycle) and an imported intervention product (dual-lever propulsion wheelchair). a one-way repeated measures analysis of variance was used to interpret propulsion and wheeled mobility data. results: there were no statistical differences in bouts of mobility between the locally manufactured and intervention product, which was explained by high amounts of variability within the data. with regard to the propulsion test, push rim users were significantly more efficient when using the intervention product compared with tricycle users. conclusion: use of wheel-mounted accelerometers as a means to test user mobility proved to be a feasible methodology in rural settings. variability in wheeled mobility data could be decreased with longer acclimatisation periods. the data suggest that push rim users experience an easier transition to a dual-lever propulsion system. introduction problem statement the number of different wheelchair designs being distributed around the world is growing at an accelerating pace, whereas information about the performance of these designs under different settings of user and terrain is lacking. although typically prescribed by medical personnel, the wheelchair provided is often poorly fitted to the user and inappropriate for the setting in which the user lives. the result is the waste of millions of dollars, lost resources to local governments and institutions and harm to patients. it is important to understand how patients are responding to these wheelchair designs to fine-tune the assessment and product prescription phase. alternative propulsion systems (e.g. hand cycle, single lever, etc.) have been shown to improve biomechanical and physiological efficiency during short performance tests (mukherjee & samanta 2001b; van der woude, dallmeijer & janssen 2001; winter et al. 2010, 2012). what is unknown is whether these alternative systems improve wheeled mobility over an extended period of time, outside of a testing condition. changes in user movement behaviour can be detected in great detail using these validated methods for measuring wheeled mobility. outcomes from these data can then yield information about the possibility of alternative designs promoting easier wheelchair travel in rural settings. new technology has made quantification of performance easier to achieve in rural settings. wheel-mounted accelerometers allow us to quantify bouts of individual mobility, over an extended period of time, outside of a controlled testing condition. these accelerometers capture the rate at which the velocity of the chair changes. attaching them to a wheelchair, then, allows us to determine how patients use their wheelchair and how their use may change when transitioning to an alternative wheelchair design. the purpose of this study was to fill the void in the wheelchair performance literature by determining the effect of design (i.e. propulsion system) on bouts of mobility and propulsion efficiency over an extended period of time in less-resourced settings. literature review the premise of wheelchair design is to improve the mobility of the user (van der woude et al. 2001). wheelchair use in less-resourced areas highlights the interaction between wheelchair design and mobility, as individuals in these communities face barriers because of inadequate infrastructure. the pursuit of improved mobility, however, is about more than just distance travelled. mobility is also correlated to health outcomes with research showing that mobility is associated with decreased risks for developing secondary conditions such as diabetes, heart disease and obesity (warms, belza & whiney 2007). thus, researching wheeled mobility over an extended period of time, rather than through brief performance tests, maps the wheelchair user interface in a manner that provides insight into frequency, duration and overall usage. this information helps practitioners and designers understand how products are being utilised, and this information can then drive functional change. devices created specifically for use in rural areas of developing countries are designed to promote increased levels of wheeled mobility with consideration of environmental barriers (e.g. unpaved surfaces). the performance benefit of all-terrain wheelchairs is well documented from both a physiological (cooper et al. 2008a; mukherjee & samanta 2001, 2001b; winter et al. 2010) and biomechanical (mukherjee & samanta 2001, 2001b; van der woude, de groot & janssen 2006; winter et al. 2010) perspective. overall, tricycle (both single lever and bimanual hand cycle) models are more biomechanically and physiologically efficient when compared with push rim designs. however, push rim wheelchairs can still be found in rural areas because these designs are easier to manoeuvre when compared with their much larger tricycle counterparts. evaluation criteria in many of these studies include use of a peak performance course (mukherjee & samanta 2001a; winter et al. 2010). only a single study reports measurements on a course designed to simulate activities of daily living (winter et al. 2012). research taking place in semi-controlled performance test course settings cannot be considered generalisable to the overall effect of the wheelchair on the user. routhier, vincent and desrosiers (2003) argue that performance courses (e.g. standardised obstacle courses) are better utilised in a rehabilitation setting where a patient must focus on goal-driven tasks, whereas product evaluation is best conducted during patients’ daily life activities (i.e. outside of a performance test setting). the advantage of collecting information during daily life activities suggests that evaluation of wheelchair design effectiveness is best completed when testing in applied settings (i.e. natural environments). use of wheeled mobility as a dependent measure accomplishes this goal by yielding comprehensive movement data that are collected via a wheel-mounted accelerometer. this method of research has yet to be used for the evaluation of wheelchair designs in less-resourced settings. therefore, the logical progression of user performance research is to focus on the bigger picture, which is studying wheeled mobility during daily life activities. wheel-mounted accelerometers can be used with an established performance test, such as the wheelchair propulsion test (wpt) (askari et al. 2013), to provide more detail about the wheelchair user interface. the combination of wheeled mobility and propulsion efficiency can yield a detailed story about wheelchair-related activity and fill the void that currently exists within evaluation of the wheelchair user interface in the developing world. evaluating wheeled mobility dearwater et al. (1985) and janssen et al. (1994) are credited for being pioneers in wheeled mobility measurement, but the primary limitation to their approach was the use of an odometer measurement for mobility. this approach can only measure distance travelled and does not provide information on how the individual is moving throughout a given period of time. data logging systems (i.e. accelerometers) enable researchers to track displacement data in real time, which can then be converted into frequency, duration and distance. this approach serves as the foundation for contemporary wheeled mobility research. tolerico et al. (2007) were the first to use mobility trackers, beyond that of odometers, on manual wheelchair users in an applied setting. researchers mounted a series of reed switches and magnets on wheel spokes, which acted as sensors for collecting mobility data in an uncontrolled environment. this placement provides valuable information on angular acceleration, but is also non-invasive to the user, which improves the quality of data being collected. cooper et al. (2008b) were the first to use wheel-mounted accelerometers for quantifying wheelchair activity in child users over an extended period of time (seven days), and coulter et al. (2011) validated these methods even further by testing adult wheelchair users. output from the wheel-mounted accelerometer provided detailed information about the wheel revolutions, absolute angle of velocity and duration of movement. in the coulter et al. work, it was revealed that the vast majority of wheeled movement happens in bouts of less than 1 min. these short bursts of movement are important findings when understanding how wheelchairs are used in daily life and further supports the utility of this method. sonenblum et al. (2012a, 2012b) advanced the work by cooper et al. (2008b) and coulter et al. (2011) with the development of a multi-stepped algorithm that improves the validity of wheel-mounted accelerometer measurements. the algorithm developed in this study is able to filter out accelerations from sources other than wheel rotation (e.g. vibrations), which helps prevent overestimating duration and frequency of wheeled mobility. results indicate that the algorithm is highly accurate in measuring when the wheelchair is actually moving, especially regarding the direction. in addition, this approach can be used to define bouts of mobility, which is a key indicator of human movement. wheel-mounted data logging systems or accelerometers have been used to reveal differences in wheeled mobility behaviour in a variety of conditions. this technique has uncovered different rates of acceleration associated with various activity settings (tolerico et al. 2007), differences between boys’ and girls’ mobility characteristics during daily life activities (cooper et al. 2008b), average length (in time) of wheeled movement (coulter et al. 2011) and techniques for mapping wheeled mobility in terms of bouts of mobility (sonenblum et al. 2012a, 2012b). possibly the most critical theme associated with this line of research is the ability to evaluate wheeled mobility in applied settings (i.e. outside of a controlled setting). in addition to wheeled mobility outcomes, it is important to continue use of established performance tests to (1) add to the growing body of literature on performance outcomes and (2) provide additional information about the effect of wheelchair design on user performance. use of the wpt yields a straightforward propulsion efficiency (metres per cycle) score after a short test. given the extensive literature on propulsion systems and user performance (mukherjee & samanta 2001a, 2001b; van der woude et al. 2001; winter et al. 2010, 2012), it is hypothesised that alternative propulsion systems are more efficient than push rim designs. however, this test has yet to be used in the context of evaluating wheelchair designs in less-resourced areas. research methods and design materials participants were recruited through the centre for medical rehabilitation (cmr), a branch of the ministry of health in lao pdr. requirements for participation included (1) full-time use of a wheelchair, (2) functional use of the upper extremities allowing the individual to self-propel a wheelchair and (3) using a functional wheelchair manufactured at the wheelchair workshop, located within the cmr, as their primary mode for transportation. cmr officials selected the wheelchair users who met the qualification criteria. of the 18 adults who qualified, 14 individuals consented to participate and completed all stages of data collection. the four individuals who were not included in the final group were excluded because of (1) not being contactable (2) not being able to self-propel a wheelchair or (3) not having a functional wheelchair at the beginning of the project. at the beginning of the data collection, 3 participants were using a push rim wheelchair (figure 1), whereas the remaining 11 participants were using a tricycle (figure 2) with regard to disability type, nine were post-polio, four had undiagnosed congenital birth defects and one was paralysed from the waist down because of a motorbike accident. five of the participants were female, and the remaining nine participants were male. the ages of the final sample ranged between 23 and 56 years. participant characteristics are displayed in table 1. figure 1: push rim wheelchair. figure 2: tricycle. table 1: participant characteristics. the alternative wheelchair used in this study was the leveraged freedom chair (lfc) (figure 3) (global research innovation and technology [grit] [www.gogrit.org)). the lfc is a unique design that features a dual-lever propulsion system, which enables the user to generate more mechanical power compared with other wheelchair designs (winter et al. 2010, 2012). leverage bars are attached to a free-wheel bicycle gear system that enables the user to generate forward propulsion strokes and maintain movement during the recovery phase, just as a typical bicycle operates. both leverage bars are independent from one another, enabling the user to turn easily and both lever bars can be removed at any time. the lfc was developed for use in developing countries and has been tested and evaluated in east africa (winter et al. 2010), guatemala (winter et al. 2012) and india (winter et al. 2012). grit donated all lfcs used in this study but no additional financial support. figure 3: leveraged freedom chair. setting all data collected in this research took place in xiengkhouang and savannakhet provinces in the lao pdr. this research was approved by the ministry of health in the lao pdr and was facilitated under the supervision of world education laos (wel). wheelchair operations in the lao pdr are facilitated through the cmr in vientiane. all locally manufactured wheelchairs are produced at the workshop in vientiane and then distributed to provincial rehabilitation centres (prcs) for delivery to the patients. data collection was facilitated under partnerships with staff members of the cmr, including the xiengkhouang and savannakhet prcs. design a quasi-experimental research design was used to measure the effect of the alternative propulsion design wheelchair. mobility was measured with a tri-axial accelerometer (gulf coast data concepts) attached to the spoke of the wheelchair (cooper et al. 2008b; coulter et al. 2011; sonenblum et al. 2012a, 2012b). mobility data were collected from all participants in two separate phases: (1) while using their personal wheelchair (pc) (i.e. locally made wheelchair) and (2) while using the provided alternative lfc. initial measurements were collected during an evaluation period of mobility employing the user’s pc. mobility data were again collected after distribution of the lfc. mobility data were collected over a 5-day period during each collection session, totalling 10 days of mobility data for each participant. the placement of the accelerometer on the spoke of the wheelchair (figure 4) is not invasive to the user and does not change the wheelchair function. each accelerometer was secured to the wheelchair spoke in a manner that prevented users from moving the device. accelerometers were weatherproofed to ensure full functionality in damp or dusty conditions. accelerometers were battery-powered and were set to collect data at a sampling rate of 12 hz. this sampling rate was selected due the length of time data were collected (five days) and to accommodate the inevitably large data files. each accelerometer was equipped with a usb that enabled upload of data to a computer after the data collection period was complete. all data were then uploaded to a password protection cloud. data were de-identified with a randomly generated code assigned to each participant. figure 4: orientation of spoke-mounted accelerometer. procedure all participants were trained on how to use the lfc for a minimum of 1 h. during each training session, researchers ensured that the user could (1) properly insert and remove both levers, (2) complete at least 10 turns (180°) in both left and right rotations, (3) propel the chair with lever bars for a consecutive 50 m and (4) travel to and from their home on a self-selected course within 100 m of the starting point. in addition to the training period, all participants were given a 10-day acclimatisation period prior to post-intervention data collection. the wpt (askari et al. 2013) was administered to each participant. the wpt is used for assessing wheelchair propulsion effectiveness by recording data on velocity (ms−1), cadence (cycles per second) and efficiency (metres per cycle) while propelling over a pre-established distance. the wpt protocol for this study had participants propel continuously for 10 m, turn around (always to the left) and come back to the starting point (a total of 20 m). all participants were timed, and the right arm was used to count the number of cycles in accordance with wpt guidelines. the distance selected in this study (20 m) was adapted from the published recommendation of 10 m to accommodate for the 180° turn. the turning phase was used to add complexity to the test and evaluate propulsion during a turn. authors of the assessment explain that the distance can be manipulated if desired (askari et al. 2013). the wpt was administered at two different times during data collection: (1) during the initial visit after the accelerometer was attached to the participant’s wheelchair and (2) during the fourth (and final) visit when the accelerometer was removed from the lfc. at the time of the second wpt administration, each participant had been in possession of the lfc for at least 15 days. all participants were visited four separate times during their involvement in the study. a detailed outline of participant visit objectives is shown in box 1. box 1: visit-by-visit detailed objectives. analyses raw data exported from the accelerometers was represented in x and y displacements measured over time. these data were analysed to establish individual bouts of mobility (sonenblum et al. 2012b) during the two separate five-day testing periods (preand post-intervention). displacement data were analysed via a five-step algorithm (sonenblum et al. 2012b), which indicated whether or not the wheelchair was moving (forward or backward). this analysis only requires the use of the x and y coordinates, representing tangential and radial orientation, respectively. the ‘moving threshold’ for this study was defined at 0.12 ms−1, consistent with previous research (sonenblum et al. 2012b). displacement above the threshold was defined as a bout of mobility. total bouts were added over the five-day collection period for each participant, and the day with the most bouts (i.e. peak bouts) was used for comparative analysis. peak bouts over each five-day testing period were recorded to help normalise the representative data and avoid heavily skewed and/or inconsistent bouts detected over the collection period. the wpt score, collected before and after lfc use, was used to define propulsion efficiency. a repeated measures analysis of variance (anova) was used to test for statistical differences between and within conditions. time specified preand post-intervention testing periods. the same statistical test was used to detect differences for all three dependent measures: total bouts of mobility over 5-day testing periods, peak bouts of mobility during 5-day testing period and propulsion efficiency (i.e. wpt). levene’s test was used to examine homogeneity of samples. significance was determined by p values < 0.05 and all statistical analyses were conducted via spss. descriptive statistics are also reported for comparative analyses. results the following results, defining the wheeled mobility and propulsion characteristics explored in this study, are presented. table 2 provides descriptive statistics for each individual participant across all dependent variables measured with the individual’s pc and lfc. data are separated by pc type and organised, in descending order, by total bouts accumulated during pc use. table 2: individual participant descriptive statistics for performance measures. total bouts of mobility results from the summation of bouts of mobility accumulated over the five-day testing period reveal no differences between locally manufactured wheelchairs and lfcs (p > 0.05). table 3 displays descriptive statistics for all wheeled mobility dependent variables across all participants. results from levene’s test indicated that the assumption of homogeneity was not violated, suggesting there was equality of variance between participants (p > 0.05). table 3: wheeled mobility results reflecting means and standard deviations (n = 14). two additional secondary analyses, average bout length and total active time, were conducted to further investigate the bout characteristics over the testing periods. both analyses were conducted using the same statistical analysis: repeated measures anova. in the first analysis, average bout length (s) was calculated and there were no differences between testing periods (p > 0.05). this analysis was conducted to reveal the average length of time each participant was sustaining wheeled movement. results from levene’s test indicated that the assumption of homogeneity was not violated, indicating there was equality of variance between groups (p > 0.05). just as was seen in the total bouts accumulated analysis, there was a large amount of variation (i.e. high standard deviations) within groups. in the second analysis, time spent in motion [i.e. active time (h)] was calculated, and there were no differences between testing periods (p > 0.05). this analysis was conducted to display changes in gross activity level over both testing periods. levene’s test indicated that the assumption of homogeneity was not violated, again, indicating there was equality of variance between groups (p > 0.05). analysis of peak bouts accumulated over a single 24-h period revealed no differences when using the lfc (p > 0.05) across testing periods for all participants. just as was seen with previous analyses, there was a high level of variation within groups, but leven’s test again indicates that there was homogeneity (p > 0.05). propulsion efficiency results from the wpt (table 4) revealed no differences in propulsion efficiency between locally manufactured wheelchairs and lfcs (p > 0.05). results from levene’s test indicated that the assumption of homogeneity was not violated (p > 0.05). a secondary analysis was conducted on propulsion efficiency to uncover how an individual’s pc (i.e. tricycle or push rim) influenced his or her transition to the lfc. this analysis was conducted as a result of participatory observation that tricycle users struggled with the transition to the lfc, whereas push rim users experienced a smooth transition. this analysis was conducted using a 2 (group) × 2 (time) repeated measures anova with a bonferroni adjustment for multiple comparisons and identification of group interactions. although separation into groups based on pc yielded unbalanced sample sizes for tricycle (n = 11) and push rim (n = 3) users, the repeated measures approach helps control for individual differences and unequal sample sizes. table 4: average propulsion efficiency (metres per cycle) during wpt (sd). results revealed significant difference both between and within groups. for participants who started using a tricycle, their propulsion efficiency significantly decreased (p < 0.001) when using the lfc, which was a large effect (η2p = 0.76). conversely, participants who started using a push rim wheelchair experienced significantly higher propulsion efficiency (p < 0.05) when using the lfc, which was a moderate effect (η2p = 0.39). a significant interaction was detected between group and testing period (p < 0.001), which was a large effect (η2p = 0.70) (figure 5). when comparing outcomes between groups, results indicate that tricycle users had significantly higher efficiency values (p < 0.001) compared with push rim users prior to lfc use, which was a large effect (η2p = 0.75). there was not a significant difference between groups when using the lfc (p > 0.05), but push rim users exhibited higher efficiency values. figure 5: changes in propulsion efficiency (metres per cycle) before and after lfc use. potential benefits and hazards none of the participants was at abnormal risk as a result of participation in this study. the lfc provides no additional risk to the user, and all participants kept their lfcs at no cost. all data were immediately de-identified, and none of the information collected during this research was made available to anyone outside of the research team until it was de-identified. recruitment and informed consent all participation in the study was voluntary and subjects were recruited from a list of qualified individuals, which was created by the cmr in vientiane, lao pdr. informed verbal consent was received and recorded from all participants. written consent (i.e. signatures) was not obtained because of the low literacy rate in areas of laos where data were collected. all participants were told that they could end their involvement at any time during the study. trustworthiness reliability the results of this study are considered reliable because of the rigorous process in selecting a subject population. all participants were selected on the basis of their wheelchair dependency and daily activity, as defined by an understanding of their daily routines, travel distances within their community and previous experiences as a wheelchair user. in addition to the homogeneous population, the methodology in the study is clearly defined and highly repeatable, given the amount of detail provided. repeatability of this research is not specific to location (i.e. laos), but would require an active wheelchair user population, who are inexperienced with dual-level propulsion systems, and given the same amount of time to acclimatise to the new product. validity the results of this study are considered valid because of the previous research that supports the use and validity of the two evaluation methods: wpt and bouts of mobility. data collected under both evaluations were complete and analysed in line with previous work. inconsistencies with previous research can be a result of wheelchair designs tested, physical setting, subject population and acclimatisation time period, all of which are unique to this particular study. discussion outline of the results results indicate there were no differences between pc (i.e. tricycle and push rim) and lfc use. the high level of variability between subjects can explain the lack of differences detected across all dependent variables, both with and without the lfc. dramatically high standard deviations seen across all outcomes make the data difficult to interpret. although no differences were found in propulsion efficiency across all participants, when separated into groups by pc design, differences were detected. statistical evidence indicated that tricycle users did not benefit, in terms of efficiency, from using an lfc, while push rim chair users experienced an improvement in efficiency when using the lfc. these findings support existing literature that lever-drive propulsion systems are more efficient compared with push rim systems. the significant interaction effect detected between tricycle and push rim users across propulsion efficiency testing period provides further explanation about the differences uncovered. tricycle users’ ability to be significantly more efficient than push rim users prior to lfc is supported by previous research (mukherjee & samanta 2001b; van der woude et al. 2001). in addition, results indicate an easier and beneficial transition to the lfc for push rim users, which could be explained by the bimanual propulsion methods employed by both designs. interesting mobility characteristics were revealed when examining influence of wheelchair design at the individual level. for example, one subject, a tricycle user, experienced an increase in total bouts, but a dramatic decrease in average bout length. this suggests that although this participant exhibited a higher frequency of movement (i.e. bouts) with the lfc, their ability to sustain continuous movement (i.e. bout length) decreased, which also led to the decrease of active hours. bout characteristics for another tricycle user provided another telling example how these data can be interpreted. this subject had a slight increase in total bouts (difference of +3), but displayed a large increase in sustained movement (i.e. bout length) and active time with the lfc. these outcomes suggest that the lfc enabled an already active individual to sustain longer bouts of activity, which ultimately promoted a longer duration of activity over the testing period (i.e. active time). as for the three push rim users, two exhibited a decrease in total bouts with the lfc, yet increased their average bout length. this suggests that the lfc was easier to use for these two participants, which increased their time of sustained movement (i.e. bout length), but did not encourage an increase in active time and, therefore, decreased overall frequency (i.e. total bouts). in addition, one push rim user experienced the highest increases in total bouts, total active time, peak bouts and propulsion efficiency across all participants, regardless of personal chair design. although no differences were found in average bout length with and without the lfc, results can still be compared to the coulter et al. (2011) study. interestingly, average bout length was more than 60 s across all participants with and without the lfc. this is contrary to the coulter et al. findings, which described the majority of wheeled movement lasting less than 60 s at a time. the nature of bout length among wheelchair users in developed and developing countries should be investigated further. use of peak bouts helped normalise participants’ mobility behaviour by signifying the distribution of bouts over the five-day testing period, which helped identify heavily skewed data. for example, one subject accumulated a total of 18 bouts while using the lfc and 17 of those bouts occurred during a single 24-h period (i.e. peak bouts). when considering this participant’s average bout length with the lfc was 51.59 s, the peak bout results suggest that this individual used the lfc for only a short period of time and then possibly abandoned the device. identifying peak bouts helps establish how consistent, or inconsistent, wheeled mobility is over the given testing period and this variable should continue to be used in future research. practical implications results from this study highlight the benefits of using wheel-mounted accelerometers to measure wheeled mobility over an extended period of time. this is the first study to use this method in context of understanding mobility in a developing country. this study also serves as an example for using a performance test (e.g. wpt) along with an extended mobility assessment to build a comprehensive understanding of wheelchair use. benefits associated with propulsion systems were confirmed during this research, and we also learned about the barriers associated with transitioning to a different wheelchair design (e.g. tricycle users to the lfc). overall, this study reaffirms the importance of wheelchair prescription and patient assessment in order to ensure users are given products that best fit their everyday needs. limitations of study although the sample size for this study was relatively low, moderate effect sizes were seen across propulsion efficiency outcomes. previous research indicates that recruitment is an inherent limitation when collecting data in less-resourced areas (mukherjee & samanta 2001a, 2001b, 2005; winter et al. 2010, 2012). recruitment in these settings is determined primarily by access to qualified participants and travel time, which is driven by financial resources. although these barriers exist, the methods and outcomes in this study suggest moderate effect sizes can be produced during a test, such as the wpt. it can also be argued that the sampled population in this study is not representative of all wheelchairs users in the lao pdr. this is because all participants were recruited from the rehabilitation centre’s database, which does not have patient records on every wheelchair user in the country. recommendations future research can investigate these transition dilemmas in a variety of ways. one approach is to only study changes in wheeled mobility for push rim users transitioning to an lfc. given the similarities in baseline propulsion mechanics (i.e. bimanual asymmetric movements), this research design would focus directly on the effect of the lfc. another approach, for measuring tricycle users’ ability to transition to the lfc, would be to increase the duration and frequency of lfc practice sessions during the acclimatisation period. these research designs would also benefit from prolonged acclimatisation periods, which could help decrease variability between participants and lead to more normalised data samples. difficult transitions seen by some participants, namely tricycle users, also led to a lack of interest in using the lfc. all participants in this study depend on wheelchairs as their primary source of mobility, and their livelihood often depends on their ability to move efficiently. those who experienced a difficult transition to the lfc most likely abandoned the new wheelchair immediately and reverted to their personal chair because of the familiarity with the older product. considering human subjects’ research will not permit taking the personal chair away from the participant to ensure they use a new product, the focus must be directed towards an increased frequency of training sessions to facilitate a smoother transition. conclusion outcomes generated from the wheeled mobility and propulsion efficiency tests offer valued information on how individuals interact with different wheelchair designs. dependent measures revealed unique individual characteristics about mobility and results support the benefits of using the combination of wpt outcomes and wheeled mobility (i.e. bouts of mobility) as effectiveness measures. more specifically, this research shows that wheel-mounted accelerometers and bouts of mobility outcomes can successfully be used in rural settings over an extended period of time. this is the first study to uncover great detail on wheeled mobility characteristics during an individual’s daily activities in a less-resourced setting. when considering this was the first study to use this method to compare different wheelchair designs in these particular environments, this research should be considered a pilot design. the robust wheeled mobility data revealed from this study sets the stage for meaningful future research. it is clear that some individuals benefitted from the lfc, while others did not, and the root causes of this phenomenon need to be investigated further. for example, the type of baseline wheelchair (i.e. personal chair) seems to affect how an individual transitions to the lfc. this can be explained by the similarities and differences in design between the three different propulsion systems. both the push rim chair and lfc require bimanual, asymmetric upper-limb movements to move and control the wheelchair. conversely, the tricycle requires one arm to generate power and one arm to control the wheelchair. because the propulsion motions are different between the tricycle and lfc, tricycle users experienced a difficult transition when using the lfc. the similarities in bimanual asymmetric propulsion seen in push rim and lfc use helped push rim users adapt quickly to the lfc and immediately experience improvements in efficiency. this paradigm can be explained by learning differences associated with propulsion systems through the examination of skill complexity and focus of attention. skill complexity, overall, is increased with use of the lfc, as it is a unique method of propulsion; however, push rim users are already familiar with a bimanual propulsion system, resulting in a smoother transition. therefore, push rim users experienced a significant increase in propulsion efficiency when using the lfc. the bimanual aspect of lfc use served as a barrier for tricycle users and resulted in significantly lower propulsion efficiency. transition to the lfc, for tricycle and push rim users, also supports the constrained-action hypothesis (mcnevin, shea & wulf 2003; wulf, mcnevin & shea 2001), which establishes the importance of focus on movement execution. for example, it was observed during the third and fourth participant visits that tricycle users were focused primarily on the leading castor or levers on the lfc, rather than looking forward and completing strong propulsion strokes. this observation could suggest that tricycle users were typically focusing on movements, rather than movement effect, which interfered with their motor control processes. conversely, the improved transition seen by push rim users can be explained by their focus on the movement effect and overall comfort with lfc use. these principles highlight the importance of effective and sustained education for patients transitioning to different wheelchair propulsion designs, which should be completed through frequent, consistent practice in variable conditions. these conclusions focus attention on the importance of adequate and effective wheelchair prescription and utilisation of various wheelchair designs. this study yields information that truly informs practitioners about how wheelchairs are used and how patients interact with various products. future research should continue the expansion of application for wheel-mounted accelerometers and the robust information they can produce, such as wheeled mobility. these approaches will continue to tell us how patients interact with wheelchairs in their personal environments and aid practitioners in providing improved and comprehensive services. acknowledgements competing interests all lfcs (i.e. intervention wheelchair) were donated for the project, and the company, grit, was not included in any part of the research design, data collection and/or analysis. none of the authors received any compensation from grit. authors’ contributions c.j.s. was the project leader and was responsible for experimental and project design, all data collection in laos, data analysis and all written work. this study served as a portion of his phd dissertation at the university of texas. j.l.j. contributed to the formation of research questions, assisted in experimental and project design and edited the written work. she served as the supervisor on the dissertation committee for c.j.s. references askari, s., kirby, r., parker, k., thompson, k. & o’neil, j., 2013, ‘wheelchair propulsion test: development and measurement properties of a new test for manual wheelchair users’, archives of physical medicine and rehabilitation 94(9), 1690–1698. https://doi.org/10.1016/j.apmr.2013.03.002 cooper, r., cooper, r. & boninger, m., 2008a, ‘trends and issues in wheelchair technologies’, assistive technology 20(2), 61–72. https://doi.org/10.1080/10400435.2008.10131933 cooper, r., tolerico, m., kaminski, b., spaeth, d., ding, d. & cooper, r., 2008b, ‘quantifying wheelchair activity of children: a pilot study’, american journal of physical medicine 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b.m., scolnik, n.k., o’hanley, h.f., dorsch, d. et al., 2012, ‘stakeholder-driven design evolution of the leveraged freedom chair developing world wheelchair’, in asme 2012 international mechanical engineering congress & exposition, houston, tx, 14 november 2012. wulf, g., mcnevin, n. & shea, c., 2001, ‘the automaticity of complex motor skill learning as a function of attentional focus’, human experimental psychology 54(4), 1143–1154. https://doi.org/10.1080/713756012 abstract introduction research methods and design results discussion conclusion acknowledgements references appendix 1 general recommendations about the author(s) tawagidu mohammed department of physiotherapy, school of healthcare sciences, university of pretoria, pretoria, south africa department of physiotherapy, school of biomedical and allied health sciences, university of ghana, accra, ghana gifty g. nyante department of physiotherapy, school of biomedical and allied health sciences, university of ghana, accra, ghana joyce d. mothabeng department of physiotherapy, school of healthcare sciences, university of pretoria, pretoria, south africa citation mohammed, t., nyante, g.g. & mothabeng, j.d., 2023, ‘perceptions of health professionals on structure and process of stroke rehabilitation in ghana’, african journal of disability 12(0), a1116. https://doi.org/10.4102/ajod.v12i0.1116 original research perceptions of health professionals on structure and process of stroke rehabilitation in ghana tawagidu mohammed, gifty g. nyante, joyce d. mothabeng received: 21 july 2022; accepted: 28 jan. 2023; published: 03 apr. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: ensuring quality in the structure and process of stroke rehabilitation helps to attain a good outcome. however, knowledge on this is limited in resource-constrained settings such as ghana. objectives: this study aimed to explore healthcare professionals’ (hcps) views and experiences of the structure and process of stroke rehabilitation in three selected hospitals in ghana. method: a qualitative study was carried out involving 26 hcps directly involved in stroke rehabilitation from three selected hospitals in the greater accra region of ghana representing the different levels of healthcare. interviews were conducted using an interview guide to understand participants’ views and experiences of the structure and process of stroke rehabilitation. interview transcripts were analysed using thematic analysis. results: hcps reported limitations with the structure of stroke rehabilitation with regards to the availability of rehabilitation units, bed capacity, approach to care, availability of protocol, staff capacity development and payment systems. with respect to the process of rehabilitation, the primary and secondary level hospitals were found not to have computed tomography (ct) and magnetic resonance imaging (mri) scanning equipment. participants also reported limitations with discharge planning, basis for discharge and post-discharge care across all three hospitals. conclusion: this study found limitations in the current structure and process of stroke rehabilitation, which when given some considerations for improvement, can help improve the quality of care and thereby improve the outcome of stroke patients in ghana. contribution: this study provided data which helps to assess the quality of stroke rehabilitation in ghana. keywords: stroke; stroke rehabilitation; structure; process; healthcare professionals; ghana. introduction stroke continues to be of major public health concern globally, as stroke is the second leading cause of death and the third leading cause of disability (katan & luft 2018). about 70% of strokes and 87% of both stroke-related deaths and disability-adjusted life years occur in lowto middle-income countries (lmics) such as sub-saharan african countries (feigin et al. 2021). ghana, which is also categorised under lmics is located in west africa and has a population of about 25 million (drislane et al. 2014). ghana is rapidly undergoing epidemiological transitions of diseases and the burden of disease has now shifted from communicable to non-communicable diseases over the last few years (sanuade et al. 2019). one cardiovascular disease that is on the rise is hypertension and this is a major risk factor for stroke. in ghana, the mortality rate of stroke is about 40% (baatiema et al. 2017a). stroke has now become the major cause of adult medical admissions in ghana and a major cause of adult disability (agyei-mensah & de-graft aikins 2010; maredza, bertram & tollman 2015). aside from the physical consequences of stroke, stroke has a serious economic impact on the ghanaian working population as most of the stroke patients in ghana are within the working age (agyemang et al. 2012). the cardinal effect of stroke on its survivors is disability (george & steinberg 2015). the long-term physical consequences of a stroke put a lot of burden on the stroke patients, their families, the healthcare system and the economy at large (brewer et al. 2013). stroke patients in ghana are also burdened with debilitating impairments and functional deficits as expected of all stroke patients (baatiema et al. 2017a; william et al. 2017). effective rehabilitation is key to reducing and improving the level of disability as well as improving the quality of life of stroke patients (hatem et al. 2016). stroke patients in lmics such as ghana are still burdened with disability despite undergoing rehabilitation whereas stroke survivors in high-income countries (hics) often may experience better functional and participation outcomes such as return to work (rhoda et al. 2015; william et al. 2017). this could be attributed to a couple of factors of which one could be the quality of stroke rehabilitation services provided. stroke patients are probably doing better in function in hics because of the better quality in their stroke rehabilitation services (bernhardt et al. 2020) including all the necessary structure and process of rehabilitation. quality of stroke rehabilitation seems to be better in these hics because of the availability of data and evaluation of stroke rehabilitation services. studies that have been conducted to evaluate stroke rehabilitation services in hics have provided recommendations for improvements which when implemented, enhances the structure and process of stroke care, which then translated into better patient outcomes. however, in lmics such as ghana, data are lacking on the evaluation of the available stroke rehabilitation to help inform policy development on stroke rehabilitation that could improve the overall quality of stroke care. therefore, there is the need to fill this gap in the research evidence on stroke rehabilitation in ghana. in order to do so, there is the need to evaluate the structure and process of stroke rehabilitation available in lmics such as ghana. the quality of care directly influences the outcome of the stroke patients. ameh and colleagues affirm that a good structure can promote good process and in turn, a good process can promote a good outcome (ameh et al. 2017). the structure and process of healthcare are therefore very important when considering the quality of care which translates into the better patient outcomes. structure is considered as the physical and organisational aspects of healthcare. these are factors that affect the context in which healthcare is provided (hoenig et al. 2002). the structural component of healthcare takes into consideration the personnel by looking at their education, training, experience and certification. it also considers the setting where healthcare is provided, which includes systemic organisation, staffing and equipment availability, among others (haj, lamrini & rais 2013). processes are the activities implemented in the rehabilitation services of patients with disabling conditions that help to progress patients’ health by promoting recovery, functional restoration, survival and even patient satisfaction (hoenig et al. 2002). these process-related factors may include diagnosis, interventions, education, preventive treatment, guidelines as well as procedures, coordination of care, individualisation, amount and timing and specific interventions (donabedian 2003). this study aims to provide data to help in better understanding of the structure and process of stroke rehabilitation in ghana to help in facilitating interventions to improve the quality of stroke rehabilitation, which in turn can improve the outcome of stroke patients. a preliminary study carried out in ghana to assess the structure and process of stroke rehabilitation in ghana was conducted by the authors of this study (mohammed, nyante & mothabeng 2022) using quantitative methods. in order to have a better understanding of the structure and process of stroke rehabilitation that was recorded in the previous quantitative study, a qualitative study needed to be carried out. this qualitative study hopes to further validate the results obtained from the quantitative study and also provide more details of the structure and process of stroke rehabilitation available. the qualitative study will provide in-depth information, which will help to enrich the literature on the structure and process of stroke rehabilitation in ghana. this study therefore aimed to explore stroke healthcare professionals views and experiences of the structure and process of stroke rehabilitation in three selected hospitals in ghana in order to ensure interventions are implemented to improve the quality of stroke rehabilitation services locally. research methods and design study design this study employed a descriptive phenomenological approach to clearly assess the views and experiences of hcps directly involved in the rehabilitation of stroke patients in ghana. phenomenology involves describing the experiences and views of a group of individuals about a particular concept or phenomenon, resulting in several people sharing their experiences on the same matter (creswell 2009). study population and sampling strategy this study purposively sampled 26 stroke hcps who were directly involved in the day-to-day rehabilitation of stroke patients from three selected hospitals in the greater accra region of ghana. purposive sampling is a non-probabilistic sampling procedure used in sampling participants in qualitative studies. this sampling technique allows researchers to choose the sample based on who they think best fits to be part of the study (crossman 2020). in this study, the researcher sampled a maximum of two stroke hcps from each of the available rehabilitation professions at each of the three selected hospitals. the hcps who were recruited included doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, clinical psychologists and dieticians. these hcps were selected if they met the following criteria: if they were 18 years and above if they had worked in stroke rehabilitation for at least 1 year or if they had any formal training or specialisation in stroke rehabilitation. settings this study was carried out at the general medical wards and stroke unit of three selected hospitals in the greater accra region of ghana. greater accra is the capital city of ghana and most of the healthcare delivery settings are involved in rehabilitation. the selected sites represented all the levels of local healthcare and included a tertiary level hospital (th) (korle bu teaching hospital), a secondary level hospital (sh) (tema general hospital) and a primary level hospital (ph) (amasaman district hospital). all the three levels of healthcare are involved in both inpatient and outpatient stroke rehabilitation. data collection the first author visited the medical wards and stroke unit of the hospitals to identify hcps who met the study inclusion criteria. participants were provided with copies of the study information sheet, which explained the aims as well as the procedures of the study. participants had the opportunity to ask questions about the study and answers were provided. written informed consent was provided by each participant who agreed to participate through signing of the consent form. individual in-depth interviews were conducted in english at a mutually agreed venue and time at the medical and stroke units of the selected hospitals. these individual interviews were conducted in-person in a quiet room. the first author was the moderator of the interview. a semi-structured interview guide (appendix 1) was used to guide the interviews. before the start of each interview, the interviewer (first author) engaged participants in informal conversation to establish rapport and prepare them for the interview. the interview questions were focused on two main themes, which were the structure and process of the local stroke rehabilitation. the interview questions were developed based on review of literature and also with guidance from a previous quantitative study conducted by the authors. with the permission of the participants, each interview was audio recorded using a digital voice recorder. the interview lasted between 30 min and 1 h. during the interview, the researcher intermittently summarises the participants’ contributions to ensure that their views were accurately understood. the recorded interviews were transcribed verbatim and entered into a microsoft word document. data analysis data analysis occurred concurrently with data collection as transcription was performed alongside data collection. transcripts were assigned specific identification numbers. analysis also included reading and re-reading of the transcripts to help generate codes by authors. a code book was then developed. themes and sub-themes were generated to capture the codes. the first two authors worked together to develop codes. themes and subthemes were then generated upon discussion among the authors. the third author cross-checked the coding and themes developed. the stages of thematic analysis served as a guide in the analysis process. nvivo software (qsr international company, burlington, massachusetts, united states) was used to manage the data. ethical considerations ethical approval was received from the ethical and protocol review committee of school of healthcare sciences, university of pretoria (protocol no.: 68/2020), ghana health service ethics review committee (protocol no.: ghs-erc 010/02/20) and korle bu teaching hospital ethical and protocol review committee (protocol no.: kbth-irb/000165/2019). permission was sought from the heads of the hospitals and the departments where data were collected. written informed consent was sought from each of the participant. participants’ confidentiality and anonymity were assured. all coronavirus disease 2019 (covid-19) safety measures were duly observed. results the interviews conducted in this study included questions on the available structure and process of stroke rehabilitation, which gave rise to themes and sub-themes. two main themes that were structure and process of stroke rehabilitation emerged with several sub-themes under each theme. the sub-themes for the structure of stroke rehabilitation included rehabilitation unit, bed capacity, approach of care, rehabilitation protocol, staff capacity development and payment system. for the process of stroke rehabilitation, the sub-themes that emerged were frequency of rehabilitation, duration of rehabilitation, length of hospital stay and discharge process, post-discharge care and follow-up and family or relative involvement in rehabilitation. participants twenty-six hcps were recruited from the three selected hospitals. of the total participants, there were six physiotherapists, two occupational therapists, two speech therapists, six nurses, two dieticians, two clinical psychologists and six medical doctors as shown in table 1. majority of participants (65.4%) were females with 34.6% being males. table 1 shows the lack of some hcps at the ph and sh, which were occupational therapists, speech therapist and clinical psychologists. table 1: profession of participants. structure of stroke rehabilitation stroke rehabilitation unit the participants revealed that rehabilitation of stroke patients was carried out in general medical wards and stroke unit in the th. however, at the sh and the ph, respondents mentioned that stroke patients were rehabilitated at the general medical wards only. at the th, some respondents mentioned that admission of stroke patients into either the medical wards or the stroke unit was mostly dependent on the availability of beds and the severity of the stroke: ‘yes, normally what we do is, when the patient is brought to the emergency and there is space at the stroke unit, they are admitted there straight. but mostly the acute ones. and if there is a first-time stroke patient too, we admit at the stroke unit. but if there is no bed available, we admit at the main ward.’ (participant 6, th, nurse) participants across all the rehabilitation settings recommended a stroke unit as the most effective setting for rehabilitation of stroke patients: ‘of course, i will recommend the stroke unit.’ (participant 7, th, psychologist) ‘obviously if there was a separate section for stroke patients, then certainly the management will be enhanced.’ (participant 18, ph, nurse) ‘in a nutshell, what i’m recommending is that we should all have stroke units, you see? but with the requisite staffing, education, availability of extra beds.’ (participant 25, sh, doctor) bed capacity for stroke rehabilitation participants across all the three hospitals mentioned that there was inadequate bed capacity for rehabilitation of stroke patients. the inadequacy in bed capacity at the stroke unit of the th was reported as the reason some of the stroke patients were admitted to the general medical wards. participants mentioned that the ph and sh had no designated beds for stroke rehabilitation: ‘not at all, we do not have adequate bed capacities. sorry to cut you short, but i mean it’s a straight no! when you discharge somebody in the morning, the next 30 minutes to 1 hour, another person is on that bed.’ (participant 26, ph, physiotherapist) ‘no. we don’t even have the capacity. we don’t really have beds for stroke patients.’ (participant 14, sh, nurse) ‘well, we (at the stroke unit) have a few beds, so sometimes we are forced to admit some patients at the medical ward or any ward provided the bed there is suitable to accommodate the patient.’ (participant 6, th, nurse) approach of care for stroke rehabilitation participants from the th mentioned the use of a multidisciplinary team (mdt) approach to stroke rehabilitation. however, this mdt approach to care was only available at the stroke unit. in the ph and sh, the mdt approach to care was reported not to be available as stroke patients were managed with other medical cases: ‘no. we don’t come together as a team. ideally, that would have been good, so that in the morning when we are doing our rounds, we have the pharmacist around, the physiotherapist around, the dietician around. that would be very ideal. but unfortunately, we cannot do that here. here, everything has different schedules. our numbers are not enough to be able to put key members together to form the stroke team. what we however do is, the physicians do their rounds first. when they finish their rounds, they check the blood pressure and make sure the patients are fine and there’s no issue. then we write a referral note for the dietician to come and see and play his part before the physiotherapist will come and see and also play his part. so, at the end of the day, everybody gets to see the patient. so, we don’t all go together as a team but we benefit from each team’s expertise.’ (participant 25, sh, doctor) ‘there’s nothing like a stroke rehab team; we work separately.’ (participant 19, ph, physiotherapist) ‘you know, you need a team to work. so, if you are alone, you can do a few things but you might not be able to do it properly. so, they might not be able to nurse them properly at the medical ward as compared to what we are doing at the stroke unit.’ (participant 5, th, nurse) stroke rehabilitation protocol participants from some professions at the th mentioned having site-specific protocols for stroke rehabilitation although not visibly displayed in the hospital. at the ph, protocols for stroke rehabilitation were displayed at the emergency unit and the general medical wards, which served as guide for the nursing staff specifically. the sh was reported to have site-specific protocol for general management of medical cases, but not for stroke management: ‘[…] usually the in-charge of the unit has the protocol but usually they will educate you. you are oriented. but i have not seen the document. but it is there.’ (participant 2, th, physiotherapist) ‘yes, we have protocols that we have modified.’ (participant 11, th, dietitian) ‘it’s just a general medical protocol. so, i think if we have a protocol for stroke management, i think it will be very helpful.’ (participant 14, sh, nurse) staff capacity development participants from the th mentioned that there was the availability of staff capacity development programmes at the stroke unit. these programmes involved weekly meetings to learn more on stroke rehabilitation through discussions and presentations. staff capacity development programmes for stroke rehabilitation were reported not to be available at the general medical wards of the th, sh and ph: ‘normally after our mdts we do our presentations. so maybe this week it will be the turn of the nurses, the doctors and then we pick other few topics and then discuss, and then do a whole presentation.’ (participant 5, th, nurse) the majority of the participants acknowledged the need for continuous education programmes related to stroke rehabilitation for staff, which were not available at their facilities: ‘most staffs should be trained on how best we can handle our stroke patients. it would be very helpful.’ (participant 21, ph, nurse) ‘the first thing will be regular training, regular training.’ (participant 24, sh, dietitian) payment for stroke rehabilitation all participants from the th mentioned that stroke patients paid for rehabilitation services out of pocket at the stroke unit. for stroke patients managed in the general medical wards, the payment system allowed for the use of the national health insurance scheme (nhis) for some rehabilitation services at all the hospitals. also, it was revealed by some participants that ability to pay for rehabilitation services was also a factor for admission of stroke patients either to the stroke unit or general medical ward at the th: ‘most patients here (in the stroke unit) who are discharged its cash and carry. but the medical ward is covered by health insurance and this is even a factor for placing patients.’ (participant 5, th, nurse) the nhis did not cover stroke rehabilitation services such as physiotherapy for inpatient rehabilitation. participants recommended that stroke rehabilitation should be completely covered by the nhis: ‘ok. so, i can speak for physio. if they can advocate for physio inpatient. presently, outpatient is catered for by the national health insurance. but inpatient, insurance does not cater for.’ (participant 17, sh, physiotherapist) ‘it’s more and less like cash and carry. you’ll pay, then when you pay, i attend to you. it’s not helpful because, right from the onset when you tell them they’re supposed to pay for the service, they don’t appreciate that idea. this is because, they feel the medical service is being paid for by the n.h.i.s.’ (participant 26, ph, physiotherapist) process of stroke rehabilitation frequency of rehabilitation sessions the number of rehabilitation sessions patients received was found to be similar in all the hospitals where stroke patients received rehabilitation once a day for five days. however, at the stroke unit, it was revealed from the responses that rehabilitation sessions could occur more than once per day depending on the patient’s needs. this was possible because the various hcps were resident at the stroke unit. it was reported by the hcps that the number of rehabilitation sessions received per week by patients at the general medical wards was based on affordability: ‘okay. so, for stroke unit per week, we come to work from monday to friday. so, from monday to friday, we treat for the stroke unit. but for the medical unit, first of all, we give you a bill for treatment session. or sometimes even if we see that you can pay, we just give you the bill for the week. so, we can give you five sessions of therapy within the week. but normally we start with three sessions. because of affordability we cannot know whether the patient can. so, you pay for three sessions. within the week, we do the three sessions for you. after that if you need more, we write another session for you to go and pay.’ (participant 2, th, physiotherapist) duration for sessions a minimum of 30 min – 45 min of rehabilitation was reported for patients at all the three hospitals but stroke patients in the stroke units were reported to receive more rehabilitation time because of staff availability. availability of computed tomography scan and magnetic resonance imaging computed tomography (ct) scan and magnetic resonance imaging (mri) availability in the facilities were reported by participants to be of high relevance to the rehabilitation of stroke patients as they help in diagnosis and also help guide stroke management. even though this was found to be of much relevance, only th was equipped with these: ‘yes. basically, it helps us to determine which type of stroke it is and the extent to which the stroke has occurred. i think they should be done as early as possible after you’ve done your physical examination and make the diagnosis. that’s the next thing you should be. unfortunately, we don’t have in-house ct scan machine or mri machines.’ (participant 25, sh, doctor) ‘the unfortunate thing is that we don’t have. so, for most of our situation, we usually have to manage for the first two or three days without a definite diagnosis which is quite daunting because you have to really hedge. but when it happens that we have to take a scan, we have facilities around where we can do the scan.’ (participant 22, ph, doctor) length of hospital stay and process of discharge discharge of stroke patients was reported by all participants to be carried out by doctors. for all the hospitals, participants mentioned that stroke patients were discharged from inpatient rehabilitation on the basis of medical stability to continue their rehabilitation on an outpatient basis. stroke patients at the th were reported to be discharged within 2–14 days of admission. at the sh and ph, patients were discharged within 3–4 days of admission: ‘and so, we [doctors] discharge the patient when we are sure that the home care of the patient can be managed by those either at home or at a nursing care and that the patient no longer has urgent needs in which we need to manage at the ward. we have an average from between two to fourteen days but we give that by the tenth they should have gone home.’ (participant 9, th, doctor) post-discharge care and follow-up participants from all the three hospitals reported that stroke patients who were discharged usually go home to continue rehabilitation on an outpatient basis. there were no follow-up visits by hcps to patient homes although some of the hcps mentioned that follow-up visits to patients’ homes could help monitor the patients’ condition and progress of improvement. it was also reported that some stroke patients requested for home follow-up visits to their homes and these follow-up visits were however reported to be at the patient’s affordability: ‘it would be better if we do follow ups, because most cases you discharge them stable. but when they come back, most of them might have changed and gone worst. so, if they can do the follow ups, it would be better.’ (participant 20, ph, doctor) ‘it would be better if we could follow-up at home. that will be best, that will be best. if it’s possible. because you know, the logistical aspect comes in.’ (participant 24, sh, dietitian) ‘so, they continue to have regular reviews at the stroke unit. some of them opt to have homecare. but that one, of course, you have to pay for a doctor to come home; unless of course, they have a nurse at home and the nurse will be monitoring them so that, if any issues come up, the nurse would communicate to the doctor. but this has to be a personal idea, it is not sponsored by the hospital.’ (participant 1, th, physiotherapist) family or relatives involvement in stroke rehabilitation participants from all the hospitals mentioned the involvement of family or relatives in the rehabilitation process of the stroke patients. the participants acknowledged the relevance and the benefits of involving patients’ and their families in the rehabilitation as this helps the patients and their relatives to understand the condition as well as the treatment being given: ‘it has been very beneficial because we involve the relatives from the first day. we talk to them, give them an insight into the condition so they don’t panic. they get to understand what is happening and how to relate with their patients who is been brought here and also if there is anything, because we engage them.’ (participant 4, th, occupational therapist) ‘for stroke patients, their relatives are always available. we don’t let all of them go and leave the patients.’ (participant 19, ph, physiotherapist) ‘very, very. the caregivers do a lot. some come here and they would want to bring all the meals from home. for those people, we start engaging the caregivers right from the beginning. right from the beginning, what they can bring, what they cannot bring. there, we work with them, go and observe the food they bring from the kitchen, from the house and all those ones. so, they are crucial. in fact, i don’t know how we would be able to make any impact in the stroke cases without caregivers.’ (participant 24, sh, dietitian) discussion the structure and process of stroke rehabilitation form a very important aspect of rehabilitation that can affect the outcome of stroke survivors. this aspect of rehabilitation however remains understudied especially in resource-limited settings such as ghana. this study aimed at exploring stroke hcps views and experiences of the structure and process of stroke rehabilitation in thes greater accra region of ghana. this study found some limitations in the structure and process of stroke rehabilitation in ghana although there were some services that were available as reported by participants. majority of stroke patients were reported in this study to be rehabilitated in general medical wards. ideally, stroke patients are expected to be rehabilitated in designated stroke units as recommended internationally (chimatiro & rhoda 2019). outcome of stroke patients managed in designated stroke units has been reported to be better than those managed in general medical wards (adams et al. 2003; langhorne et al. 2002). the stroke unit system of rehabilitation has been adopted internationally, especially by hics with good success rates (christian et al. 2016; gould et al. 2011; ras 2009). however, lmics such as ghana are yet to adopt this stroke unit system of rehabilitation as there is only one stroke unit in ghana as recorded in this study and previous studies (baatiema et al. 2017a; sanuade et al. 2021). the first and only stroke unit in ghana was established in january 2014 in collaboration with a health team from wessex in the united kingdom (uk). to date, this stroke unit continues to remain the only stroke unit in ghana (baatiema et al. 2017a). a recent review by wasti et al. (2021) also confirmed the lack of a well-structured stroke rehabilitation system in lmics such as ghana. the lack of roll-out of more stroke units since the establishment of the first one shows that stroke is not well prioritised in ghana despite its increasing prevalence. the hcps in this study also recommended the rehabilitation of stroke patients in a well-equipped dedicated stroke unit to help enhance the management of the stroke patients, which will in turn improve their functional outcome. this study also recorded limited bed capacity for stroke rehabilitation across the hospitals as reported by participants. at the ph and sh, this study found that there were no designated beds for stroke patients. stroke patients would therefore have to compete with other medical cases for beds in the general medical wards. although there was a stroke unit at the th, participants also reported limited bed capacity, as reported in similar studies in ghana (baatiema et al. 2017a; morris 2011). as stated by some of the th participants, limited bed capacity was one of the reasons why some stroke patients were also rehabilitated in the general medical wards, indicating that only a small percentage of ghanaian stroke patients were able to access the stroke unit. sanuade et al. (2021) reported that the limitation in bed capacity for stroke rehabilitation in ghana sometimes delayed the start of the rehabilitation and this tend to affect the outcome of rehabilitation negatively. the mdt approach to care for stroke patients has been recommended to be the best approach to stroke care, which improves the outcome of stroke patients (clarke 2013). during the wessex ghana stroke partnership, the mdt approach of care for stroke was recommended by the uk team as a very important tool for effective stroke care (johnson et al. 2017). this mdt approach to care has been found in this study to be practiced at the stroke unit of the th only. however, the ph and sh as well as the medical wards of the th did not practice the mdt approach to care for stroke despite its known benefit. baatiema et al. (2017b) also reported the lack of mdt approach to care for stroke management in various hospitals across ghana. the possible reasons why the ph and sh did not practice the mdt approach to care could be because of the lack of a dedicated stroke unit and the unavailability of some hcps. it was also found in this study that the ph and sh did not have the services of occupational therapists, speech therapists and clinical psychologists. therefore, stroke patients in these facilities did not have access to the services of these hcps showing a limitation in their rehabilitation, which could affect their outcome as also reported by ameh et al. (2017). similar studies conducted in ghana revealed the unavailability of some hcps for stroke rehabilitation especially the allied health professionals, which included occupational therapists, speech therapists and clinical psychologists (baatiema et al. 2017b; sanuade et al. 2021; names deleted to maintain the integrity of the review process). capacity development for staff in stroke rehabilitation is key to rehabilitation as it helps the hcps be more abreast with current management strategies and methods as well as evidenced-based practice. staff capacity development is crucial to stroke care as it contributes to the quality of care through equipping the hcps with current evidence-based knowledge and skills in stroke care (baatiema et al. 2017a). staff capacity development was found in this study to only be available at the stroke unit of the th and this was because the unit only managed stroke patients. however, for hospitals without a designated stroke unit, developing staff capacity in stroke care only might be difficult as the same hcps managed stroke alongside other medical cases. a similar study conducted in ghana on the barriers of stroke care confirmed the lack of staff capacity development in stroke management (baatiema et al. 2017b). this study found that stroke rehabilitation services were mostly paid out of pocket and not fully covered by the nhis as also recorded in the review by ekeh (2017). the nhis was introduced in ghana in 2003 to help reduce the financial burden of diseases and health on ghanaians (gould et al. 2011). however, the coverage of the national health insurance is limited especially for stroke rehabilitation. therefore, stroke patients who were not financially stable might not have access to rehabilitation services, which are not covered by the nhis. anecdotal information reveals that there are ongoing dialogues to help get all stroke rehabilitation services on the health insurance scheme and this will be of utmost benefit to stroke patients as most of them are unable to afford rehabilitation services out of pocket. the frequency and duration of rehabilitation was found to be similar in all the hospitals in this study. however, for stroke rehabilitation services such as physiotherapy, the frequency differed among patients across the three hospitals depending on the affordability of the therapies as they were not covered by the national health insurance. based on the affordability some patients received less therapy sessions per week. computed tomography and magnetic resonance imaging scanning were reported by respondents in this study to be of high relevance to the rehabilitation of stroke patients as they help in clinical decision making on the approach and type of rehabilitation to be carried out. these special investigations were not available at the primary and secondary hospitals in this study. another study in ghana also reported the limitation with equipment for diagnosis of stroke, which include ct and mri scanning (sanuade et al. 2021). the unavailability of these equipment tends to delay the rehabilitation process as patients were often referred to other facilities for the scans to be carried out as reported by some respondents. according to murie-fernández et al. (2012), as rehabilitation delays, the complications of the stroke worsen, affecting the outcome of the stroke patient. it has been recommended that discharge of stroke survivors from inpatient rehabilitation should be planned by the mdt (wasti et al. 2021). however, in this study, discharge from acute in-patient care was planned and carried out by the medical doctors and the basis for discharge was medical stability. recommendations based on existing guidelines for discharge of stroke patients from acute care are when patients have gained medical stability and have also gained some form of functional independence (winstein et al. 2016). stroke patients in ghana were reported in this study to be discharged from inpatient rehabilitation within 14 days of admission showing a shorter length of hospital stay. a study conducted in ghana also reported that stroke patients in ghana have shorter length of hospital stay (mohammed, nyante & mothabeng 2022). one possible reason for the early discharge could be because of the limitation in bed capacity for stroke rehabilitation. stroke patients were discharged to continue rehabilitation on an outpatient basis to make room for new admissions. this study also found that the only outpatient services available for stroke patients in ghana were the regular medical check-ups and physiotherapy. ideally, outpatient stroke rehabilitation should be designed to provide multidisciplinary rehabilitation, which includes all the core stroke rehabilitation disciplines such as the doctors, nurses and therapists as recommended in previous studies (janzen et al. 2019; wasti et al. 2021). this study further found that there were no follow-up visits to patients’ home and communities after discharge from hospital inpatient rehabilitation, which was also reported in a previous study by tinney et al. (2007). discharge of stroke patients from acute inpatient care to home and community-based rehabilitation, in addition to the outpatient rehabilitation helps in achieving good outcome for stroke patients because of the continuity of care to prevent secondary complications and to promote community reintegration. community-based rehabilitation is effective in tackling issues such as return to work and activities of daily living, which involve patients and their families in the rehabilitation process (walker, sunnerhagen & fisher 2013). community-based rehabilitation includes the social and family support in rehabilitation, which in turn, provides the necessary physical, emotional and spiritual support needed by the patient (wasti et al. 2021). this study as well as that of sanuade et al. (2021) recommend the introduction of home and community-based stroke rehabilitation in ghana to help minimise the complications of stroke as well as to reintegrate patients back into their previous life. limitations and recommendations this study used a qualitative method that makes generalisability of the obtained data limited. the data obtained from this study are limited to the settings where data were collected. this study therefore recommends conducting similar studies in other settings across the country in order to have more data across the country on the structure and process of stroke rehabilitation. conclusion this study explored the perception of hcps on the available structure and process of stoke rehabilitation in the greater accra region of ghana and through this exploration, some limitations of the service were recorded. there were also some of the elements of structure and process that were found to be available for stroke rehabilitation. for the structure of rehabilitation, stroke unit and the use of an mdt approach to care were only available at the tertiary hospital. all hospitals recorded limited bed capacity, a lack of rehabilitation protocols and payment of rehabilitation services out of pocket. this study also recorded a lack of staff capacity development for staff who manage stroke patients in general medical wards. for the process of rehabilitation, most stroke patients received rehabilitation, mainly physiotherapy, five times a week for about 30 min – 45 min. ct and mri scanning were only available at the tertiary hospital. patients were also discharged by doctors when they are medically stable and referred to continue rehabilitation on an outpatient basis. these reported gaps and limitations in stroke-related services highlighted the need for improvement in the structure and process of stroke rehabilitation in order to ensure quality of stroke care for the stroke patients. acknowledgements the authors would like to acknowledge the contributions of all healthcare professionals who took time off their schedule to be part of this study. they would also like to thank the management of the three hospitals for granting us the permission to undertake the study in the hospitals. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors have been involved in designing and writing the study, data collection, data analysis and write-up. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data of this study are available on request from the corresponding author, t.m. disclaimer the views and opinions presented in this manuscript are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references adams, 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(for both stroke unit and general medical wards). any recommendations? what approach of care is used in stroke rehabilitation? probe: is there an mdt approach of care? if there is, what are the constituents of the mdt? which of the hcps do you think are not part of the team and how relevant are they to the rehabilitation of the stroke patients? are the hcps actually working together as a team or they work in segregation? if they work in segregation, how is this affecting patient management? what will you recommend based on you experience? are hcps specifically trained in stroke rehabilitation or they are general practitioners? how frequently do staff continuous education take place? probe: how helpful is this programme? any recommendation? what guides the rehabilitation of stroke? probe: is there a written down protocol or guideline for stroke rehabilitation? if there is, is it actually used and how helpful is it? are resources available to execute what is in the guideline or protocol? do you think it conforms with recommended standards? do you think there should be adjustments to the protocol? any recommendations? how do patients for rehabilitation services? probe: is this payment system the best? what do you recommend for stroke rehabilitation and why? any recommendations? process questions think about the available process of acute stroke rehabilitation in this hospital how many therapy sessions do patients receive per week? probe: are the therapy sessions received by stroke patients enough? do you think more sessions could be done and why? any suggestions? what is the duration of rehabilitation for each session? probe: is this enough? any recommendations? how relevant is ct scan and mri availability onsite? probe: how helpful are these to rehabilitation of the stroke patient? what is the length of hospital stay for stroke patients? probe: based on your experience of stroke rehabilitation, do you think it is enough for patient recovery? if it is short, what could be the possible reasons for this? any recommendations? based on your experience of stroke care what do you think the basis for discharge from acute care should be? probe: do you think they receive adequate care before they are discharged? any reasons for the basis of discharge? any suggestions? what are patients discharge destination? probe: is follow-up to home and community part of the patient discharge plan? any recommendations? what are the outpatient destinations for rehabilitation? any recommendations? at what point is the patient and family part of the decision making for patient management? general recommendations what recommendations will you like to make to the hospital authorities on how to improve services for stroke rehabilitation in terms of the available structure and process in order to help improve patient outcome after stroke. are there any other contributions you will like to share on this issue discussed before we come to the end of this discussion? abstract introduction introducing my positionality medical socialisation critiquing rehabilitation case material conclusion acknowledgements references about the author(s) brian p. watermeyer department of global health, faculty of medicine and health science, stellenbosch university, cape town, south africa citation watermeyer, b.p., 2024, ‘rehabilitation, the disciplining of the body, and disability identity: reflections from psychotherapy with disabled people’, african journal of disability 13(0), a1505. https://doi.org/10.4102/ajod.v13i0.1505 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa,’ under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research rehabilitation, the disciplining of the body, and disability identity: reflections from psychotherapy with disabled people brian p. watermeyer received: 28 june 2024; accepted: 27 sept. 2024; published: 08 nov. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: recently, attention has been paid to how rehabilitation not only provides medical treatment and instrumental skills but also impacts psychological well-being and identity. we all have psychological structures that discipline the self, enforcing norms internalised during early life and exacting judgments when we fail to ‘make the grade’. in cases of congenital disabilities, rehabilitation interventions may span many years, involving strict programmes of therapy, exercise and self-discipline. these regimes may align with internalised rules in harmful ways, as striving for functional improvements takes on a moral dimension, affecting psychological health and empowered disability identities. objectives: this study explores rehabilitation by examining the experiences of adults with congenital disabilities, who have undergone childhood medical and rehabilitative interventions. method: this study was based on the experience of a psychoanalytic psychotherapist working with adults with disability, and presents composite case material to illustrate how interactions with medical authority figures, such as rehabilitation professionals, can have a formative influence on self-identity and entitlement to inclusion. results: the findings vividly reflected how ‘medical socialisation’ created meanings of disability that were enacted and repeated well into adulthood. conclusion: the discipline of rehabilitation still has much to do in examining its value-laden assumptions and practices, and how these may shape the internal and relational worlds of people with disability. contribution: this article contributes to the debate in critical rehabilitation studies, focussing on the issue of constructions of disability which may be communicated to people with disability, with implications for self-advocacy and the growth of the disability movement. keywords: disability; rehabilitation; psychoanalysis; psychotherapy; mental health; critical rehabilitation studies; disability empowerment; disability identity. introduction like other biomedical interventions, rehabilitation has traditionally viewed itself as a discipline that unambiguously benefits people with disability, in a way which is not complicated by ideology or vested interest (botha & watermeyer 2022). more recent accounts have begun to query this position, opening new critiques of how rehabilitation practice has implications for how disability is constructed across society, and the implications of this for social change (gibson 2016). this in turn resonates with aspects of critique from the disability movement and the discipline of disability studies, which can be traced back to the historic protest at the congress of rehabilitation international (ri) in winnipeg in 1981 (swain et al. 1993). there, delegates with disability demanded strong benchmarking of disability representation at the event, with the denial of this demand leading to the formation of disabled people international (dpi) a few years later. over the past decade, the emergence of the sub-discipline of critical rehabilitation studies (crs) has added to the growing critical discussion (gibson 2016; sullivan 2005). as one assesses the layered reality of disability-related disadvantage, levels of analysis vary from ideological and material to relational and intra-psychic. unfortunately, however, research in these different domains can appear splintered, missing an opportunity to explore how the various strands of socially engendered disadvantage interact in the context of real lives (watermeyer 2013). with the critique of rehabilitation in mind, this article presents an account of the life of a man living with a physical disability, which contrasts the anonymising, inevitably reductive public health-oriented view of his social predicament with the felt reality of his personal, inner life. at issue is the reality of the lifelong socialisation of many people with disability in a world saturated with ableist assumptions and signals – a world in which rehabilitation practices and professionals sometimes play an influential role. the motivation for this article stemmed from my experience as a psychoanalytically oriented psychotherapist working with clients with disability. this role provides an exceptional opportunity to witness the workings and implications of ableist socialisation, including that involving health interventions, while also demonstrating how the complexity of individual disability experience confounds the categories of research in sociology and public health. as will become clear, i regard depth-oriented psychotherapy as one crucial route towards empowerment of the disability community, based on its potential to unpack and debunk deeply embedded ableist assumptions about the self and the world borne of life in a discriminatory society (watermeyer 2012). clinical accounts from psychotherapy with people with disability have an immense amount to teach us about how ideology settles in at the level of the intra-psychic, and from there becomes enacted in relationships with the self and the world, which can make it harder to escape the clutches of negative beliefs about life with disability. to demonstrate this, and add to debates on how rehabilitation practice can shape disability identity, i present a composite case history of a psychotherapeutic process with an adult with a physical disability, combining and disguising material from a host of therapies i have been involved in, in accordance with ethical principles of client confidentiality in psychoanalytic scholarship (gabbard 2000). while only one case study is presented, it is one that carries elements which appear frequently in my work, and i believe it may provoke fruitful discussion on these issues. i begin, though, by describing my own positionality as a disability studies scholar and a person with disability – identities that both require reflexive consideration as i approach this material. thereafter, i move into a discussion of the case material, considering its implications for rehabilitation theory and practice. introducing my positionality i am trained as a clinical psychologist, and employed primarily as a disability studies academic, while working part-time as a psychoanalytically oriented psychotherapist working with people with disability in private practice. i also live with a disability myself, in particular, severe visual impairment. while my background in psychology and psychoanalysis means that i approach the question of disability inequality from a psychological point of view, this often contrasts with my academic environment, which is a department of global health, within a health sciences faculty. i offer these details because of how my circumstances provide me with varying, although perhaps complementary, perspectives on disability-related social disadvantage, as well as the psycho-emotional aspects of living with impairment. in my ‘day job’ at university i am steeped in what might be termed a public health view of disability, which is to a large extent dominated by quantitative data on the social circumstances of people with disability, in crucial areas such as access to healthcare, employment, transportation and other essential resources and services. these data are essential to our understanding of the systemic nature of disadvantage, rendering imperatives for change at the level of policy and service design (who 2011, 2022). yet, such knowledge also provides a view of the life-worlds of people with disability which is, to some extent, anonymising. by necessity, the need to identify categorical distinctions means creating divides between the ‘haves’ and ‘have nots’ that smooth over the vast complexity in experience which reflects the reality of life with disability in an ableist society. while the deprivation of essential resources is a contravention of basic human rights, which demands redress at the highest level, as a categorical descriptor it homogenises the experiences of all, flattening the radical diversity of lives with disability. again, this is utterly necessary, but shows only an aggregated and depersonalised level of reality, while eliding others. for example, what this form of knowledge can do is to propagate the idea that access to, say, reasonably appropriate healthcare somehow makes the problems, the quandaries, of the societal experience of disability ‘go away’; this is seldom the case, and reflects a view which is, at best, incurious. such an individualising perspective is still discernible in the who’s 2030 action plan for developing rehabilitation services (who 2017). by its nature, disability confounds biomedicine’s understandable need for reductive sense-making, scrambling its narrow ideas on where ‘the problem’ of the social adversity experienced by people with disability lies. in stark contrast to the picture aforementioned is the view i have of disability inequality from my therapist’s chair in my home consulting room. here, i literally see the contextual experience of disability from the opposite angle – from that of individuals often undergoing lifelong experiences of discriminatory treatment not only at structural and systemic levels but also at the level of the personal and relational. furthermore, the issue at hand involves not only the material and relational realities of what occurs ‘out there’ in the community but also the psychological impressions these realities leave on the inner world, which are often long-lasting (watermeyer 2013). here, inner emotional experience and development are interwoven over decades with ableist experiences in families, institutions and the community, in a manner that can at times make the public health perspective seem like an absurd simplification. for example, in the life of an adult with a congenital impairment such as cerebral palsy, the developmental milieu from earliest infancy has been, to a greater or lesser degree, shaped by ideas and emotions surrounding disability prevailing within the family (parens 2006, 2009). our shared legacy of disability segregation means that very few people have had the opportunity to live alongside persons with a range of impairments, who may be living fulfilling, flourishing lives. consequently, parents faced with the unexpected reality of a newborn with cerebral palsy will respond, both consciously and unconsciously, in a variety of ways. the lack of essential early childhood intervention support for such parents can lead to the enactment of commonly held ambivalences and prejudices about the life potential of individuals with disability, starting from the earliest period of infancy (harris & wideman 1988; lussier 1980; watermeyer 2002). but even when support is available, as noted earlier, the ‘problems’ of disability are not ‘solved’. sustained, depth-oriented psychotherapy provides a window into the internal worlds shaped by such circumstances, and how identity itself is all too often entangled with ableist beliefs. the process of uncovering these realities is by necessity slow, as many memories are sealed closed by associated trauma, which must be processed in order for internal shifts to take place. of course, this work is also expensive and, lamentably, the prioritisation of mental healthcare to the disability community remains woeful, reflecting a lack of insight into the gravity of the exact issues i describe here. the notion of ‘disability empowerment’ is at times used loosely and has varying definitions (marks 2002). a psychoanalytic view emphasises that the growth of personal power rests on solid, internal foundations, borne of a debunking of internalised ableist ideas, as well as the processing of the possibly traumatic experiences with which they are associated (marks 2002; watermeyer & swartz 2016). medical socialisation a further possible aspect of growing up with a congenital disability pertains to what we may describe as ‘medical socialisation’; in other words, the ways in which acute or sustained exposure to medical institutions and professionals may have a formative influence on the lives of people with disability (tremain 2017). medical and rehabilitation professionals often appear in the lives of people with disability at times of acute trauma, such as after the onset of an acquired disability, or after the birth of an infant with a congenital impairment (sullivan 2005). these are moments, or periods, during which anxiety is high, and the future uncertain. as discussed, parents in such circumstances have probably not had the experience of adults with fulfilling lives who live with the same impairment as their child, as is also the case with an adult with an acquired disability such as paralysis. consequently, these individuals may feel deep uncertainty about what sort of future is possible for their child or themselves – questions to do with ‘where i belong now’, ‘what i can hope for’ and ‘what disability does to my identity’. in this scenario, the overt and non-verbal signals received from health professionals about the implications of disability for a fulfilling life can be very powerful indeed (parens 2009). for children growing up with congenital disabilities requiring ongoing rehabilitation regimes, a relationship with a rehabilitation therapist may have a formative influence on the child’s incipient disability identity, with potentially far-reaching implications for self-worth and emotional well-being in adult life. critiquing rehabilitation rehabilitation has, like other health disciplines, historically been regarded as value-neutral (marks 1999). in other words, the work of rehabilitative therapy has been understood as unidimensionally positive – the ‘good work’ of ameliorating the functional limitations of impairment. this view, when set against several decades of critical disability studies scholarship, proved to be a naïve one (gibson 2016). the ideological terrain surrounding disability is always fraught with tensions to do with control and normalisation, the perennially challenging question of human difference and dilemmas of identity (davis 2001). wandering into this melee, rehabilitation cannot help but assume a host of ideological positions, often not explicit, but hidden in the unarticulated underpinnings of practice (ravaud & stiker 2001). the recent emergence of the field of crs has signalled the beginning of a drive to develop and consolidate critiques of rehabilitation, which have been with us for some years (botha & watermeyer 2024). the simple truth that rehabilitation science’s rasion d’etre is to correct, to put right, to repair, is both fundamental and inescapable (ravaud & stiker 2001). consequently, it is not something for which the discipline needs to apologise, but it does present a responsibility to examine its ideological foundations and implications. in short, the way in which rehabilitation is accomplished will inevitably be entangled with how disability is constructed in society, and, crucially, how people with disability feel about themselves and the world. case material having set the scene, i now move to a description of a composite client from my psychotherapy practice, holding together the stories of several clients whose early lives have been shaped by rehabilitation. in terms of the ethical responsibility to protect client confidentiality, i employ the composite method, while also fully subscribing to the international psychoanalytic association’s principles for scholarship based on psychoanalytic work (for more details on anonymisation to protect client confidentiality, see: https://files.taylorandfrancis.com/ripa-patient-anonymization-author-checklist.pdf.). rafik’s story rafik is a 48-year-old muslim man living with cerebral palsy, who has been in weekly psychotherapy for 4 years. he is mobility impaired, and mostly uses a wheelchair, although is also able to walk short distances with crutches. he works as a financial officer in a small retail company, an occupation with few prospects, around which he remains ambivalent. growing up rafik’s childhood and young adulthood reflected ongoing, often strict and demanding rehabilitation regimes, especially physiotherapy. his earliest memories are of being encouraged to try harder to walk, as his parents and physiotherapist presented what he termed a ‘united front’, in their preoccupation with normalising his mobility as much as possible. therapy sessions occurred three times weekly for extended periods, and he recalls levels of exertion and pain which drained him of both physical and emotional energy. from these earliest experiences, however, the ‘work’ of therapy took on a value-laden aspect, in which he came to experience it as a duty he owed, in particular, to his parents. both his mother and father spoke regularly of their hope that he would reach his ambitious therapeutic goals, and how happy this would make them. from here, he noted ‘it was easy to feel that there was something, like, really wrong with me that i needed to put right’. the imperative to try harder, to ‘be better’ also interacted with the family’s religious values, adding to the sense of a moral duty to heal, and the germ of an idea that even to allah his essential nature was somehow unacceptable. like many other families in such circumstances, rafik’s parents and siblings sincerely wanted the best for him, and their encouragement was motivated by love (ferguson 2001; harris & wideman 1988; parens 2009). yet, it is also inescapable that we are all socialised, to some extent, into a belief that life with disability, as well as disability itself, is somehow wrong, undesirable or spoiled. this family was no different, and these unarticulated beliefs were everywhere in rafik’s young life, mixing love with something which, at a deep level, came to feel like some form of rejection. the expressions of love, manifesting in an imperative that rafik be ‘repaired’, could not but carry with them a foundational struggle with, even abhorrence of, difference. this is a terrible conundrum for all and underscores the gravity and stubbornness of internalised oppression as an issue in the empowerment and political mobilisation of people with disability (thomas 2001). unless carefully explored and discussed, the intentions of impairment-based physical rehabilitation are simply antithetical to the acceptance of human difference; it is the difference that we fight, day in and day out, in the therapy room, and it must therefore clearly not be our friend. echoing accounts from auto-ethnographic disability studies literature on rehabilitation, rafik described how it felt like ‘i had to try as hard as i could to not be like i was’ (french 1993). obviously, this relational predicament flies in the face of the intentions of most parents, who seek to create an environment of acceptance for their child, which lays the groundwork for self-acceptance and self-worth in later life. besides the religious values which the imperative to walk intersected with, rafik’s family also manifested a common culture of stoicism, in which expressions of vulnerability were frowned upon. his school experiences, which involved a heavy valuing of sporting prowess, added to these signals, causing him to believe that he would be rejected or shamed if he expressed negative emotions such as sadness or distress. the internal reality though, was that from an early age his life regularly carried profoundly distressing experiences. he faced othering and bullying at school, felt afraid and uncertain about his future, and regularly suffered from physical pain, exhaustion and loneliness. it is likely that the culture of ‘bearing up’ and coping in silence existed within this family before it was visited upon by disability, but the presence of rafik’s physical impairment seemed to render the tendency more acute. the imperative to not show distress often relates to anxiety within the observer about being confronted with the pain of another, with such expressions consequently being ignored or shamed. we all carry an unconscious store of our own traumatic feelings and memories, accumulated over lifetimes of developmental challenges, losses and traumas (frosh 1991). our need to maintain distance from these formidable aspects of our internal worlds renders an aversion to expressions of distress in others, as these may awaken our own vulnerabilities, threatening our emotional security. but in the case of disability, the stakes of this dynamic are raised, for two reasons. firstly, it is argued that people with disability often serve as containers for the unwanted, shameful projections of the non-disabled majority, positioning this group as an unwanted other (marks 1999; watermeyer 2013). secondly, there is a reality to the proposition that people with disability do, in fact, often experience extreme suffering, by dint of the systemic exclusion, stigma and discrimination which is pervasive in so many societies, not to mention the very real issues of functional limitation, fatigue and physical pain. for both of these reasons, as a society, we really do not want to know how people with disability feel, as it may overwhelm us, and also evoke feelings of guilt because of our complicity in maintaining a social order which is shot through with harm and injustice. in rafik’s life, the foregoing combined, enforcing a far-reaching silence on his emotional life, both from others and ultimately even from himself. as a child growing up with a severe impairment situated in an ableist and excluding world, he needed specific, substantial and ongoing emotional support, almost certainly more than the average child. yet, with painful but familiar irony, my understanding is that his disability led to the opposite extreme, where anxiety within his parents about his difference, dressed up as a loving imperative to work harder at rehabilitation, left him internally abandoned in a life of daily emotional trauma. let me reiterate that these parents, like most parents, had only the best intentions for their child, as they faced the physically and emotionally challenging reality of raising a child with a significant physical disability (ferguson 2001). sustained mental health support, based on early childhood intervention to assist them through the early years of rafik’s life, as well as to process their own unacknowledged feelings about disability, might have made a world of difference. however, as noted earlier, mental healthcare for people with disability and their families remains poorly understood and inadequately prioritised. adulthood the man i met in his early forties still clearly carried the struggles and unresolved conflicts of his early life. while he had, despite discrimination and other forms of adversity, managed to achieve a post-school qualification in accounting and find relatively secure employment, he was brought to my consulting room by ongoing struggles with depression, harsh self-judgement and deep feelings of inferiority. his assessment of himself described a litany of failures, including in his career, his personal relationships and love life, and as a son and sibling within his family. rafik’s story was one of a lifelong struggle for self-acceptance. at the heart of these feelings was a conviction that, in some fundamental way, ‘i am wrong the way i am, and must be better’. as our conversations grew, links between these feelings and what had occurred over his childhood within his family and his experience of rehabilitation became increasingly evident. what the implicit (although inadvertent) messaging from his parents and therapists had left him with was a foundational, unconsciously held belief that he was to blame for his disability, and for the anxiety and distress that it had brought to his family. this logic is not hard to understand; the imperative to ‘put it right’ through work in rehabilitation settles as an idea that, if it is my duty to solve the problem, then the ongoing prevalence of that problem must be my fault, my failing. needless to say, these feelings about one’s inherent damage, and a sense of having failed to repair it, form a very unsteady foundation for moving out into the world, especially a world that demands eloquent self-advocacy from people with disability if exclusion is to be challenged. at base, the capacity for such healthy entitlement to inclusion relies on an authentically felt belief that it is ‘ok’ to live with disability; that it is ‘ok’ to be the way i am (watermeyer & swartz 2008). in rafik’s life, as is the case with people with disability everywhere, much in his socialisation signalled exactly the opposite, and rehabilitation services were clearly implicated in this. rehabilitation’s drive to ‘put him right’ had been delivered and internalised with no balancing validation of difference, leaving rafik in a quandary in which he experienced his ‘true’ self as damaged and unacceptable to the world. although walking was painful and exhausting, it was the only choice bringing the possibility of approval, creating a widening internal split between his authentic experience and the person he felt he must strive to be. the regime of silence around vulnerability that characterised rafik’s family life had, in adulthood, taken up residence in his internal world. what this meant was that experiences of struggle, sometimes relating to ableist treatment and the effects of impairment, were met in his internal dialogue with punitive self-blame, shaming and invalidating his daily difficulties. i have written elsewhere about how growing up in a discriminatory world can lead to people with disability developing harsh super-egos – the super-ego is freud’s term for our inner critic, or moral conscience (watermeyer 2013). quite simply, harsh judgements ‘out there’ translate into similar judgements ‘in here’, because it is only through experiences of acceptance by others that we can grow in self-acceptance (winnicott 1965), and often the opposite case pertains. what this means is that many people with disability, like rafik, live in a state of fighting a battle on two fronts, against the stigma, criticism and othering of the social world, as well as the voices of internal judgement. returning to the notion of empowerment, i noted earlier that personal power is built on the processing of emotional trauma. in short, developing the self-compassion needed in order to express healthy entitlement requires a thorough examination and integration of the ways in which we have been hurt. people with disability who, like rafik, have been drawn into a dynamic of self-blame through their socialisation are, until receiving appropriate support, unable to fully recognise what they have suffered at the hands of a world consistently ambivalent about disability. put another way, the nature of ableist socialisation makes it difficult for people with disability to grieve for what was lost through lives of socially engendered exclusion, a state which has been termed melancholic suspension (cheng 2000). preclusion from grieving means being unable to access the just anger which can flow from it, leading to political mobilisation, personal power and social change (watermeyer 2017; watermeyer & mckinney 2022). the work of emotional exploration such as that performed with rafik was aimed at precisely this form of emancipation and subversion. conclusion rehabilitation culture as discussed, over recent years a turn has become discernible in rehabilitation scholarship and practice towards greater reflexivity and a recognition that therapeutic interventions are always embedded in ideology. part of this has involved a greater focus on the meaning of therapeutic relationships, and how powerful these can be in shaping identity. in addition, the revolutionary swing towards community-based rehabilitation, with its centralising of community integration and empowerment, has gone a long way to addressing the individual, medicalising logic at the heart of the original rehabilitation project. however, the difficulty of addressing rehabilitation’s internal contradictions should not be underestimated. rehabilitation science, like biomedicine itself, cannot avoid separating the ‘damaged’ from the ‘whole’, the ‘vulnerable’ from the ‘strong’, the ‘fortunate’ from the ‘unfortunate’. all of this militates against what we might term human meeting – that is, the compassion borne of an authentic recognition of the universality of human vulnerability, which is the essential basis for truly integrative change in the disability arena (davis 2002). rehabilitation professionals are in an excellent position to model acceptance and validation of human differences, but achieving this will demand concerted and nuanced change to both philosophy and practice. an essential point of departure is training that offers a deeper emphasis on relational aspects of practice, addressing not only instrumental skills but also the personal and emotional relationships which young practitioners have with disability as an axis of human difference. packed training programmes and under-resourced service installations contribute to a reductive and functionalist view of rehabilitation goals, allowing un-thought enactments of ableist values in clinical practice. the only route to a deeper understanding of the emotional currents and ramifications implicit in rehabilitation relationships requires that practitioners be provided with opportunities for supported introspection, in which their own feelings, motivations and needs surrounding their disability work may be brought to light (watermeyer in press). such insight allows for relational skills sufficiently nuanced to offer interventions which aim to correct ‘flaws’, while also continually affirming personhood, choice and a self-identity that can be whole no matter one’s divergences from biomedical normalcy. practitioners need to understand, first and foremost, their entanglement in a world of ideological propositions about disability, which have deep and lasting implications for the self-identity of people with disability, while recognising the gravity of their role. rafik felt that his humanity had somehow become lost in the functional regimes of health professionals; relationships that begin by taking seriously the reality of our shared humanity are more likely to grow a secure, integrated sense of self in all of us, clients and practitioners alike. acknowledgements competing interests the author declares that he has no financial or personal relationships that may have inappropriately influenced him in writing this article. author’s contributions b.p.w. declares that they are the sole author of this article. ethical considerations the article presents data gathered from psychoanalytic psychotherapy, framed around the ethical requirements stipulated by the international psychoanalytic association (ipa) for scholarship based on clinical analytic work. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s 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accepted: 21 apr. 2024; published: 19 july 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the need for rehabilitation in south africa has doubled between 1990 and 2017 and is expected to increase in the coming years. however, the rehabilitation needs of south africans (and globally) remain largely unmet. establishing a common understanding of the value of rehabilitation can inform clinical practice and policymaking to achieve universal health coverage (uhc). objectives: this study aims to explore the value of rehabilitation services in south africa’s public healthcare sector by gathering perspectives from stakeholders. the goal is to inform policy decisions related to the implementation of national health insurance (nhi) in south africa. method: the study used a phenomenological approach and interpretivist paradigm. semi-structured interviews were conducted face-to-face, online, or telephonically with 12 stakeholders from various rehabilitation sectors. the value of rehabilitation was analysed and categorised into five main categories: context, service delivery, patient outcomes, economic and financial components, and collaboration within and between sectors. results: the value of rehabilitation was found to be multifaceted, because of the varying health, economic, and social challenges faced by many south africans. conclusion: the study identified components of value-based rehabilitation that should be prioritised in the proposed nhi of south africa. future research should explore all stakeholder perspectives, including patients, and provide empirical evidence of rehabilitation’s economic and societal value. contribution: we highlight priority areas that are central to the value of rehabilitation in south africa and other lowand middle-income countries (lmics). tailoring rehabilitation services to patient and community needs is crucial for achieving value-based care. given south africa’s commitment to the united nations convention on the rights of persons with disabilities, prioritising rehabilitation remains essential. keywords: value-based care; value; rehabilitation; south africa; rehabilitation stakeholders; disability. introduction the healthcare industry globally is increasingly emphasising the concept of ‘value’. various stakeholders, including healthcare funders, service providers, academics, and organisations, recognise the necessity for more efficient healthcare delivery with limited resources amid rising demand (jette 2018; who 2021). this recognition is part of a broader trend in healthcare, shifting from volume-based to value-based services. volume-based services involve paying providers based on the quantity of services delivered (fee-for-service payments) (national department of health 2017), while value-based services prioritise quality, outcomes, efficiency, and cost (kamal, lindsay & eppler 2018; modica 2020). south africa is restructuring its health system with the national health insurance (nhi). the nhi aims to provide quality and equitable healthcare for all (national department of health 2017), aligning with the world health organization’s (who) value-based health services framework (who 2021). the nhi focusses on improving health coverage and providing equitable, quality healthcare while managing costs (national department of health 2017). it is therefore expected to enhance healthcare and provide value-based healthcare. the demand for rehabilitation in south africa is growing because of the quadruple burden of disease – human immunodeficiency virus (hiv) and tuberculosis, chronic illnesses and mental health, injury and violence, and maternal, neonatal, and child mortality (achoki et al. 2022). although literature reports that globally, the need for rehabilitation has increased by 63% since 1990, potentially impacting 2.41 billion people (cieza et al. 2020), the data on the rehabilitation needs of south africans remain scant and under-reported (morris et al. 2019). however, it is estimated that the associated years lived with disability (yld) in south africa has almost doubled from 1990 to 2017, and is expected to increase by 17% from 2017 to 2022 (louw et al. 2021). despite the estimated increase of the need for rehabilitation, it is often treated as an add-on service, lacking sufficient policy support from the government and leading to undervaluation and under-prioritisation (who 2017a). for people with disabilities (pwds), rehabilitation forms an essential part of their well-being and their participation in life (health systems trust 2020; mlenzana et al. 2013; who & the world bank 2011). however, because of the lack of access to healthcare, many pwds forfeit the opportunity to receive rehabilitation (kahonde, mlenzana & rhoda 2017; who 2015). south africa has ratified the united nations convention on the rights of people with disabilities (uncrpd) and supports the sustainable development goals (sdgs) that aim to guide global development (statistics south africa 2019). these commitments are focussed on ensuring equitable access to services and inclusion in decision-making for pwds. furthermore, south africa’s commitment to universal health coverage (uhc) aims to provide quality healthcare, including rehabilitation, to all citizens without financial hardship (who 2017a), and therefore the government needs to prioritise rehabilitation services in south africa. rehabilitation, defined as a ‘a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment’ (world health organization 2023), is generally accepted as a person-centred service aiming to improve or restore individual function and reintegration into society (who 2017b, 2018; wade 2021). despite growing interest in value-based healthcare (vbhc), limited literature explores the value of rehabilitation (jordan & deutsch 2021; louw, dizon et al. 2020; morris et al. 2019; roth & hornby 2022). jewell, moore and goldstein (2013) advocated for the value of physical therapy, emphasising best practices, performance measurement, and cost-effectiveness evaluations. rundell et al. (2015) proposed a framework for stakeholders to define rehabilitation’s value, considering outcomes such as quality of care, clinical outcomes, patient and caregiver satisfaction, and costs. in a recent study, jordan and deutsch (2021) propose measuring rehabilitation value through cost-effectiveness analyses across provider, health system, and societal perspectives, associating value with costs and effectiveness. they suggest a budget impact analysis for shorter-term cost assessments (1–3 years) (jordan & deutsch 2021). other frameworks for value, specific to occupational therapy in singapore (wong et al. 2022) and physiotherapy (cook et al. 2021) highlight aspects such as personalised goal-setting, meaningful outcomes, managing costs, patient-centred care, guideline-concordant integrated care, cost-effectiveness, patient experience, and outcomes. the literature reveals varying interpretations of value, reflecting different perspectives and circumstances among stakeholders. south africa’s restructuring of the health system presents an opportunity to examine the value of rehabilitation. as the world moves towards vbhc and uhc, it’s important to define and determine the value of rehabilitation services to be able to inform policy decisions and strategic health package purchasing. a recent systematic review of vbhc from healthcare professionals’ (hcps) perspective revealed many components that need to be considered in value-based care such as hcp, job, and environmental factors (van engen et al. 2022). however, none of the 45 articles used in the review were from lowand middle-income countries (lmics). investigating the opinions of rehabilitation stakeholders in south africa will help lmics understand how rehabilitation value is perceived, and which factors should be considered when providing value-based rehabilitation services. this study aims to explore the perspectives of rehabilitation stakeholders on the value of rehabilitation in the public health sector of south africa. research methods and design research design a descriptive qualitative study with a phenomenological approach using an interpretivist paradigm was conducted (eds. ritchie & lewis 2003). the authors explored the phenomenon of value-based rehabilitation services as understood by different stakeholders in various settings such as clinical, academic, government or managerial settings, based on their experiences. setting this study was conducted in south africa, a culturally and geographically diverse country with nine provinces. each province has its own legislature, premier and executive council (department of government communication and information system 2023). healthcare in south africa is governed by the national department of health (ndoh). the role of the ndoh is policy formulation, monitoring and evaluation, and provision of support and coordination to the provincial dohs (the presidency: republic of south africa 2004). each provincial doh is mandated to organise and deliver healthcare services to the province (katuu 2018). in south africa, healthcare, including rehabilitation, is provided at all levels of care, which entails primary healthcare (phc) services as well as healthcare provided at district, regional, tertiary, and central hospitals, each with a specific purpose (ndoh 2000, south african national department of health 2015; western cape government: health 2014). the south african healthcare system consists of two sectors, namely the public healthcare sector (serving more than 80% of the population) as well as the private healthcare sector, which provides healthcare to the minority of the population who can afford to belong to medical schemes or pay out-of-pocket healthcare costs (burger & christian 2020). this study focussed on the public healthcare sector because of the vast inequities that persist within the south african healthcare system with most of the population being serviced by the public healthcare sector. in addition, the nhi will ultimately lead to a restructured health system in which a single publicly owned and administered purchaser will purchase healthcare services on behalf of everybody (ndoh 2017). population and sampling population: inclusion and exclusion criteria key informants with a national, provincial, and/or local standing position specifically in relation to rehabilitation and disability in south africa, were invited to share their perspectives. rehabilitation stakeholders who only practised or were solely involved in private healthcare settings were excluded from this study. this study purposively did not include patients or end users of rehabilitation services, as the principal investigator (pi-rm), intended to explore patients’ perspectives in a separate future study. sampling a two-step sampling process was applied as detailed next. step 1: purposive sampling: we selected a purposive sample of stakeholders based on their knowledge, interest, and willingness to share their experiences. the selection process involved discussions with rehabilitation and disability researchers and the ph.d. candidate’s supervisory team. participants included a disability sector representative, a clinician engaged in rehabilitation research, national policy stakeholders, and an academic with a special interest in disability and rehabilitation services, who had published peer-reviewed articles. step 2: snowball sampling: the primary sample, selected through purposive sampling, nominated professionals from different sectors including academia, policymaking, clinical practice and rehabilitation management, via snowballing. this approach helps when the population is dispersed and the required characteristics for the study are not easily available (eds. ritchie & lewis 2003). the authors anticipated that a diverse range of rehabilitation stakeholders with insights into the south african rehabilitation context would be included in this study. sample size in the case of phenomenological research, it was estimated that 10 interviews would suffice if the interviews have produced enough in-depth data to ensure that the objectives of the study were reached (moser & korstjens 2018). the recruitment process in this study aimed to recruit enough participants that would lead to data saturation (a point where ‘no new information added is expected to enhance or change the findings of the study’ [moser & korstjens 2018]). following the purposive sampling and snowballing processes, 46 rehabilitation stakeholders were invited to participate in the study. however, only 12 rehabilitation stakeholders agreed to participate in the study. of all the nominees, only one nominee was not a healthcare professional (hcp), but a representative from the disability sector. unfortunately, this nominee could not participate in the study because of unavailability to conduct an interview. this resulted in only hcps participating in the study. the reasons for non-participation included a lack of response after follow-up emails were sent to the participants who initially indicated their willingness to participate (n = 9), non-response from 19 stakeholders, conflict of interest (n = 1), as well stakeholders (n = 3) declining to participate because of retirement, involvement in coronavirus disease 2019 (covid-19)-related activities and time constraints, respectively. figure 1 illustrates the sampling process in the study. figure 1: organogram illustrating the sampling process. demographic information of participants a short demographic questionnaire was developed by the authors and included information about the stakeholders’ current role and workplace, years of experience, areas of expertise and/or experience, the stakeholders’ involvement in any physical rehabilitation at the time of the interview, and in what way. the purpose of this questionnaire was to contextualise the findings of the interviews and to monitor and ensure diversity in sampling. table 1 provides demographic information of the participants, including the area of expertise within the field of rehabilitation, their profession, years of experience, and the province where they were located during the interview period. many of the participants had more than one area of expertise. most of the participants were physiotherapists (pts) (n = 7), followed by occupational therapists (ots) (n = 4), and then speech-language and hearing therapists (slts) (n = 1). table 1: demographic information from rehabilitation stakeholders. instrumentation the pi conducted semi-structured individual interviews. the format was face-to-face, by telephone or online via zoom (zoom video communications inc, version: 5.12.2 [9281]) or microsoft teams (version 1.6.00.376 (64-bit), according to the preference of the participant. only one interview was conducted face-to-face at the university. the rest of the interviews were conducted online or by telephone. no other parties were present during the interview process except for the interviewer (the pi -rm) and the participant. an interview guide (box 1) was developed using international and national literature (malakoane et al. 2020; morris et al. 2019; rundell et al. 2015; south african lancet national commission 2019; the lancet 2009; who & the world bank 2011). the interview guide was drafted by the pi and was shared and discussed with one of the authors of this article (lm), and externally audited by a senior researcher in the field. the interview guide explored aspects of the rehabilitation landscape in south africa (reported elsewhere) as well as how stakeholders perceive ‘value’. box 1 contains only the questions relevant to this article about the value of rehabilitation. the interview guide was piloted on a participant before the start of the study by the pi, and the data were included in the findings of this study. box 1: interview guide questions. procedure the pi contacted the initial sample and subsequent nominated peers via email. contact details were obtained from colleagues who nominated the participants or university websites. a second email was sent to interested participants with an information sheet, consent form, and preferred interview details. two weeks were given for a response. if the contacted participants did not respond within 2 weeks of receiving the two follow-up emails, the lack of response was accepted as an indication that the participant was not interested or available to participate in the study. in these instances, the recruitment attempt ended. the recruitment process was continuous as participating stakeholders nominated other potential participants throughout the study, which was conducted between january and november 2020. all interviews, lasting between 45 and 75 min, were conducted in english and recorded using a digital recorder or zoom or microsoft teams with additional notetaking. recordings were de-identified and transcribed. following the analysis of 12 interviews, the pi (rm) and another author (de) convened to determine richness of data and agreed that data saturation had been reached. data collection concluded at this point and no additional participants were recruited. the pi is a female physiotherapist with clinical experience in the private and public healthcare sectors, including hospitals, outpatient facilities, rehabilitation, step-down facilities, and home visits. except for one participant, whom the pi knew in a professional capacity, the pi had no personal and/or professional relationship with any participant. the pi, a postgraduate student in physiotherapy, introduced herself to all participants and established rapport by explaining the interview process and creating a comfortable environment. the co-authors, well-known researchers in the rehabilitation community, did not participate in the interviews to protect anonymity of the participants. they were involved in coding, data analysis, and interpretation, forming the foundation of this research. the authors of this article are all female, native south africans, and collaborated on the critical revision and drafting of this article. data analysis we used an inductive approach to generate innovative ideas. through content analysis, we developed themes and categories that described value-based rehabilitation experiences of stakeholders in different settings. the analysis was framed within existing theories and frameworks of value-based care pertaining to rehabilitation as described earlier in the introduction (cook et al. 2021; jewell et al. 2013; jordan & deutsch 2021; rundell et al. 2015; wong et al. 2022). this approach helped us gain a better understanding of the phenomena under investigation (hsieh & shannon 2005). coding each author coded two interviews. after comparing our codes and categories, we created a joint codebook. the pi (rm) continued coding the rest of the interview transcripts, using atlas.ti, version 9. open coding was used for the identification of new emerging codes and categories, which were then added to the codebook and discussed with two of the other authors (de, lm) throughout the analysis process (gale et al. 2013; moser & korstjens 2018). a continuous and iterative consultative process was followed throughout the coding process to ensure consensus of the coding among the authors. the pi coded all transcripts. this process of iterative data analysis and peer debriefing (carter et al. 2014), assisted in a broader understanding of the content of the interviews and ensured a more accurate representation of the final theoretical framework (chapman, hadfield & chapman 2015; ritchie & lewis 2003). the authors identified patterns and correlations among codes by labelling words, phrases, and sentences. the codes were grouped by frequency of occurrence and categorised under a particular theme. the team followed an iterative process with continuous discussion and consensus to finalise the codes and categories. ethical considerations the study was approved by the health research ethics committee (hrec) at stellenbosch university, south africa, (ref no. s19/07/123 [phd]). written and verbal informed consent was obtained from each stakeholder prior to the commencement of the study. participation was completely voluntary, and no incentives were offered to participants. the study revealed neither personal information nor stipulated any personal details when the findings were reported. results interview results two main areas were explored namely the meaning of person-centred value and the value of rehabilitation services. these areas formed the themes for this study. however, emerging categories were applied to further explore the value of rehabilitation, as indicated in table 2. verbatim quotes are provided with each participant’s unique reference number to explore the findings. table 2: main themes and categories. components of value the meaning of person-centred value the participants shared their understanding of value, which was person-centred. the most common ideas (themes) included value fulfilling individualised needs, being inclusive of others, enhancing and enriching quality of life, and monetary value. participants felt that value is a personal or individualized experience and that it serves a particular need or purpose for that individual: ‘so, i think it’s when it’s personalized or individualized? … if something is of value to me, it’s because a few reasons, but because i specifically need it an and it will be useful to me.’ (p12, pt, academic/clinical) ‘… it would need to be relevant to me, it would need to be consistently available or available when it is needed. … but i think something that is valuable, i guess meets my particular, would meet my particular needs whatever they are.’ (p6, ot, clinical) however, some participants felt that value goes beyond the individual experience and that it’s inclusive of others: ‘… something that is not just going to benefit me alone it must make a difference in people’s lives.’ (p8, ot, management/ policy) ‘i would say that’s something that is meaningful, that it has some meaning for me personally or to others that are close to me.’ (p11, pt, academic) furthermore, participants felt that value is when something enhances and enriches quality of life: ‘… so, when it allows, or it enriches my life somehow by allowing me to do something that i wouldn’t be able to do so easily in other ways. and it gives me great pleasure, ja it’s all about quality of life and pleasure, or making things more easy or possible, enabling me to do something.’ (p5, st, management/ clinical) in addition, the aspect of value being associated with its monetary value was also highlighted by the participants: ‘… when it, when it serves a particular purpose that is one, and that purpose can be either in financial, in that it is expensive and when i sell it i can get money …’ (p3, pt, academic) value-based rehabilitation services the participants highlighted various factors that can influence the value of rehabilitation services including aspects around context in terms of the patient, the community, setting of service provision, service delivery components; outcomes of rehabilitation services, economic and financial components as well as the impact of collaboration on providing value-based rehabilitation. context: most of the participants emphasised the importance of the context of the patient when providing value-based rehabilitation services. understanding not only the intricate needs of the patient but also how the contexts of communities may differ and how the value of rehabilitation may differ for different individuals and communities was mentioned as important considerations to enhance the value of rehabilitation services: ‘… to me value … you can’t understand value-based therapy unless you live there, unless you can be a part of that community. then you can understand what is valuable for that community … maybe it is very different to what is valuable in another community somewhere else.’ (p7, ot, academic/policy) ‘and then the other one is the value to the patient that we need to look at. how did they value it in terms of improving their participation in society and their quality of life?’ (p3, pt, academic) ‘the voice of the person, client centeredness, you know what is it that that that that the patients or the person or the people with disabilities or impairments, or what is it that they find valuable?.’ (p10, pt, academic) service delivery components: the participants expressed that for rehabilitation services to be of value, it needs to be evidence-based, acceptable to the people, and it needs to be of high quality. effective, efficient, and efficacious treatment that optimises the patient’s treatment sessions were other aspects that must be considered in value-based rehabilitation as described by participants. additionally, participants emphasised the importance of using appropriate outcome measures to demonstrate the value of rehabilitation services and being held accountable for delivering quality rehabilitation services: ‘effectiveness of the treatment, and efficiency of the treatment. so, i can move from one level to the next in a short space of time if i have it targeted and focused, right?.’ (p1, pt, clinical/ academic) ‘obviously outcome measures. trying to get therapists to do outcome measures …’ (p4, pt, clinical/policy/management) ‘well, i think to me what is important, is focusing on outcomes and looking at the efficacy of whatever interventions, looking at the evidence associated with whatever intervention.’ (p2, ot, policy) ‘and it must be acceptable to people, and it must have that certain passion to the patients that you are providing the service to and the quality, it must be of good quality.’ (p8, ot, management/policy) ‘i think in a public health context, particularly in a primary health care level, i always preach to my students: do a screening assessment and treat during your first session. do not send this person away without value from that one session.’ (p5, st, management/clinical) patient outcomes: the participants also mentioned different outcomes that may influence the value of rehabilitation. participants believe that creating a difference in quality of life and/or function and health status as well as facilitating reintegration into home, work, and social life are important considerations in providing value-based rehabilitation: ‘so, we are looking at maybe changes in health-related quality of life, changes in functioning … and i don’t think we are doing enough of that [research] … no evidence of what we are doing and that is a big gap in rehabilitation. we can’t say what our value is.’ (p3, pt, academic) ‘i think about re-integration back into the home, back at work. so, have you made a difference to that person’s participation, that person’s functional abilities?.’ (p1, pt, clinical/academic) in addition, it was also mentioned that value-based rehabilitation services can restore purpose and dignity in the lives of people who require rehabilitation: ‘yeah, so it’s just that sense of purpose, independence, and quality of life.’ (p9, pt, academic) ‘… they place value … in being able to care for their families, for example financially and so we need to be able to, to get them to a point where at least there’s some value in dignity in being able to earn some sort of …’ (p10, pt, academic) health economics and financial components: various factors related to an economic or financial bearing that may impact the delivery of value-based rehabilitation services, were mentioned by the participants. these factors include performing economic evaluations, considering financial and time costs, input from the providers and caregivers, and ensuring the measurability and sustainability of rehabilitation services: ‘you can do a what they would call a cost-benefit analysis versus a cost-effective analysis.’ (p3, pt, academic) ‘and i think of cost should be perceived cost as well, sort of cost-benefit and i think it comes also in terms of if you look at not just financial cost but time cost and commitment by caregivers.’ (p5, st, management/clinical) ‘… that has to be sustainable….’ (p12, pt, academic/clinical) collaboration and unity within the rehabilitation sector: the participants mentioned various aspects in terms of collaboration to strengthen the value of rehabilitation services. they alluded to the impact of strong collaborative efforts between various stakeholders to streamline services and the importance of the disability and rehabilitation sectors advocating for each other in value-based rehabilitation care: ‘… but i feel that there is an overlap and that we can both [the rehabilitation and disability sectors] be advocating for one another on this [the value of rehabilitation].’ (p4, pt, clinical/policy/management) ‘i think that if there was a way to streamline services or manage our services slightly differently … but collaborate with other players, other stakeholders, other members of the health team to add value to that one monthly visit, i think that that would be really, really important.’ (p6, ot, clinical) a common understanding of what rehabilitation entails was important for participants in providing value-based rehabilitation services: ‘… if we talk about value is, first of all is that we need to know what is rehabilitation. like what, what it is. we need uniformity and understanding of what it is, because you can’t actually put value to something that is vague and elusive.’ (p11, pt, academic) besides working with rehabilitation stakeholders, a participant also mentioned the importance of public participation and how the value of rehabilitation can be further enhanced if understood and appreciated by the public: ‘it needs to be understood and appreciated by the general public that value, you understand?’ (p11, pt, academic) discussion this study investigates the perspectives of rehabilitation stakeholders concerning the value of rehabilitation services within south africa’s public healthcare sector. the findings reveal nuanced interpretations of ‘value’ at the individual level, influenced by contextual variables. participants associate ‘value’ with enhancing quality of life, meeting needs, achieving goals, and providing peace, happiness, and pleasure, occasionally incorporating monetary considerations. the value of rehabilitation services is intricately tied to various factors, including the patient’s setting, community dynamics, and service provision. emphasising high-quality, evidence-based rehabilitation, particularly in primary healthcare settings, is imperative. key outcomes, such as improved quality of life and the restoration of patients’ roles in the home, work, and social spheres, play a pivotal role. participants agree that value-based rehabilitation is manifested through sustainable, measurable practices, evaluated through economic assessments and robust health indicators. effective collaboration among diverse rehabilitation stakeholders, including the public, is deemed crucial. participants’ feedback indicates a link between personal values and the perception of rehabilitation value, as both are associated with improving various life aspects. this suggests diverse implications of value for individuals in different circumstances (wong et al. 2022). despite this diversity, a shared understanding among rehabilitation stakeholders about the essence of the value of rehabilitation can facilitate knowledge translation into practice, enabling the delivery of value-based care to those in need. value-based healthcare is defined differently in the literature (steinmann et al. 2020). porter defines value as patient outcomes relative to total costs (porter 2010). porter’s value equation is arguably the most commonly used proposition of vbhc (talluri, harrington & halawi 2020); however, hurst et al. (2019) are of the opinion that the value equation defined by porter does not consider the allocation and distribution of resources in a health system funded through taxation or social insurance such as the national health system. teisberg, wallace and o’hara (2020) say value can only be assigned to improving patient health outcomes and not just quality (teisberg et al. 2020). steinmann et al. (2020) explain that the context influences how vbhc is understood, making it ambiguous. similarly, the who emphasises the importance of countries identifying the needs of the community to be able to deliver value-based care (who 2021). this is in agreement with our findings as participants highlighted that context is particularly important in south africa. despite being classified as an upper-middle-income country, south africa ranked as the most unequal nation globally in 2022 (the world bank 2022). this inequality is primarily attributed to inherited circumstances, beyond an individual’s control, encompassing factors such as location, gender, age, parental background, and race (the world bank 2022). this inequality significantly impacts access to healthcare, including rehabilitation. the challenges to rehabilitation access in south africa include limited capacity at the phc level, a scarcity of specialised rehabilitation facilities, and early hospital discharges to accommodate critically ill patients (louw et al. 2023). additionally, access problems for those in rural areas stem from socio-economic and geographic factors, including rural terrain, poor road conditions, long distances to healthcare facilities, transportation deficits, high out-of-pocket expenses, and prevalent poverty and unemployment (vergunst et al. 2017; health systems trust 2020). this is particularly problematic for pwds as a lack of access to rehabilitation can result in worse health outcomes, deterioration in function and could add to the disability-poverty nexus when reintegration and participation in education and work is hampered (health systems trust 2020; sherry 2015; south african human rights commission 2017). while these challenges are not unique to south africa, the commitment to uhc in the country makes our findings relevant for the implementation of value-based care, ensuring inclusivity in healthcare access. as a crucial component of addressing pwds health needs, rehabilitation should be prioritised within health systems and funding decisions. the south african department of health (doh) is dedicated to achieving uhc through the nhi implementation. value-based health care is deemed a core component for uhc, ensuring financial protection, quality healthcare, and equitable access aligning with uhc goals (who 2021). participants suggested that economic evaluations are conducted to show the benefits of rehabilitation and emphasised the imperative of quantifying these benefits, to support the value of rehabilitation. economic evaluations have been recommended in the literature to illustrate the value of rehabilitation (jewell et al. 2013; jordan & deutsch 2021; rundell et al. 2015). scholars in south africa have already started with such evaluations. louw et al. (2020) reported on the cost-saving benefits of stroke rehabilitation for previously employed people who suffered a stroke and focussed on return to work as the outcome. the study illustrated that a work intervention programme could result in a net saving (in terms of tax recovery and savings from disability payments) of r133.1 million over 5 years, compared to the costs of the programme, survivor rates and return-to-work rates, which as the researchers suggested, should be considered as an investment for the country (louw et al. 2020). the who’s value-based health services framework emphasises a value-for-money component alongside integrated people-centred health services (who 2021). while the economic component aids in understanding rehabilitation service value’s impact on the economy, a patient-centred approach, considering outcomes important to the patient, remains essential for a comprehensive evaluation. visagie and swartz (2018) reports that the needs of marginalised people such as pwds are often overlooked even in a country like south africa where human rights and an inclusive approach are highly prioritised. furthermore, roth and hornby (2022) state that when considering the definition or measurement of the value of rehabilitation, it is important to include the inputs and perspectives of people living with a disability. it therefore remains crucial to conduct research on the value of rehabilitation from the patient and/or client’s, as well as the community’s perspective to be able to understand what matters most to the patient and the community, and to foster inclusivity. our study underscores the significance of patient outcomes in evaluating rehabilitation. these outcomes, that go beyond economic considerations, encompass quality of life, function, reintegration, dignity restoration, and societal benefits, aligning with existing literature highlighting the positive impact of rehabilitation on end-users including pwds (who 2017c; mcclure & leah 2021). however, rehabilitation does not only address health issues but it also impacts the economy at large through cost savings (e.g., decreased hospital admissions or readmissions) as well as facilitating independent healthy lives of productive members of the community (who 2017c). notably, our findings emphasise the responsibility to illustrate the impact and benefits of rehabilitation within the south african context. in a lmic, such as south africa where resources are limited, but the need for rehabilitation continues to rise, it is important to ensure that rehabilitation services are cost-effective without compromising on achieving the best possible outcomes for the end-user of rehabilitation. literature suggests that providing evidence on health economic measures is crucial for demonstrating the economic and societal advantages of rehabilitation to government, policymakers, and funders (louw et al. 2020; neill et al. 2023). measuring and recording outcomes not only enhance the value of rehabilitation but also hold providers accountable for treatment results (ndoh 2017). this approach ensures that end-users receive quality care aligned with their goals and desires, resulting in benefits for all stakeholders. porter (2010) asserts that ‘value’ in healthcare encompasses crucial aspects such as quality, efficiency, evidence-based practice, and safety. consistent with porter’s perspective, our participants emphasise that service delivery factors, including efficient and effective evidence-based practice of high quality, are essential for providing value-based rehabilitation services. evidence-based practice integrates scientific information from research studies, clinician expertise, and consideration of patient values and desires (roth & hornby 2022). clinical practice guidelines (cpgs) serve as effective tools offering evidence-based practice recommendations to diverse stakeholders, including rehabilitation professionals (dizon et al. 2018). various value frameworks for physiotherapy have highlighted the importance of cpgs in delivering value-based care (cook et al. 2021; jewell et al. 2013). however, literature indicates a scarcity in the development, relevance, and implementation of allied health cpgs in south africa (dizon et al. 2018). jewell et al. (2013) stress the need for a collaborative effort within the profession to demonstrate the value of physical therapy and prevent professional irrelevance. hence, it is crucial for the south african rehabilitation sector to collaborate in developing and implementing relevant practice guidelines. this collaborative effort can enhance the value of rehabilitation through the provision of effective, efficient evidence-based practice. a good example of such a collaborative effort is the acute hospital rehabilitation intensive services (arise) project that provide acute, multi-disciplinary, comprehensive rehabilitation for stroke patients to ensure enhanced shortand long-term outcomes based on the international classification of functioning, disability and health (icf) framework (langton-frost et al. 2023). summary in summary, our research underscores the unique value of rehabilitation in the south african context, shaped by diverse health, socio-economic, and socio-geographic challenges faced by its citizens. while similar challenges are present in other lmics, the impact on value-based rehabilitation may be comparable. south africa’s commitment to uhc emphasises every citizen’s entitlement to quality healthcare. achieving uhc is contingent on providing value-based care (who 2021). the participants identified five crucial components essential for determining the value of rehabilitation in south africa, as depicted in figure 2. figure 2: components of value-based rehabilitation services in south africa. prioritising these components within the healthcare system, clinical practice, and policy is imperative to promote and foster value-based rehabilitation services in south africa and ensure that the rehabilitation needs of pwds are addressed. for example: priority should be given to improve access to rehabilitation at the phc level (louw et al. 2023) (context) to ensure that rehabilitation end users can access quality rehabilitation (service delivery) close to where they live, work, or go to school (who 2018) to achieve the outcomes that are desirable to them (patient outcomes) (porter 2010) in keeping with evidence-based practice which will result in a positive economic impact by limiting out-of-pocket costs (who 2017c) for the patients and providing individuals who can contribute to the economy (health economic factors). this will require a collaborative effort within the rehabilitation sector between different professions, as well as across sectors such as health; housing and sanitation; and transport (ndoh 2000) (collaboration). the implementation of the nhi offers a substantial opportunity to tackle health inequities in the country and enhance rehabilitation services within the healthcare system (sherry 2015). to effectively demonstrate the value of rehabilitation services and establish relevant health indicators, future research should prioritise the collection and presentation of empirical data. it is important to acknowledge that the value components identified by our research participants may not be universally applicable. therefore, conducting similar studies in other settings and countries, especially in lmics, is highly recommended to ascertain what value-based care will entail for them (who 2021). strengths and limitations the findings of this study contribute to the existing knowledge on value in healthcare, particularly in the context of rehabilitation services. to the best of our knowledge, no other research has explored the perspectives of stakeholders in lmics on this subject. the study results provide a comprehensive framework for understanding the value of rehabilitation, with potential applications in shaping policy direction. a shared understanding of the value of rehabilitation among healthcare professionals can foster collective efforts to deliver value-based rehabilitation services. while interpreting the study’s findings, it is important to acknowledge encountered limitations. the study sample included only healthcare providers, predominantly from the western cape province, and the sampling method covered only five out of nine provinces, although representing both rural and urban areas. future research should aim for a more diverse inclusion of rehabilitation stakeholders, including representatives from non-governmental organisations (ngos) and patients by using a stratified sampling approach, for example. in fact, a follow-up qualitative study is planned to explore patients’ perspectives. this is especially important given the global shift towards value-based care, emphasising patient-centred approaches. incorporating patients’ perspectives in healthcare research is essential for a more comprehensive understanding. challenges were encountered in participant recruitment as the study began shortly before the outbreak of the covid-19 in south africa, and continued during the early stages of the pandemic. many invited participants did not respond or were unable to participate because of covid-19-related commitments. some prioritised personal or work commitments during a time of uncertainty about the virus, its impact, and implications. conclusion this study explored the perspectives of south african rehabilitation healthcare stakeholders regarding the value of rehabilitation in the country. the perceived value of rehabilitation was found to be multifaceted, encompassing contextual factors, service delivery components, patient outcomes, economic considerations, and collaboration among diverse stakeholders. the unique challenges of the south african context, marked by diverse health, socio-economic, and geographic factors, contribute to its distinctive perspective on value. the study presents a prioritised framework of components crucial for delivering value-based rehabilitation services in south africa, particularly considering the potential strengthening of rehabilitation within the healthcare system through the implementation of the nhi. recommendations include exploring the perspectives of various additional stakeholders, such as patients, representatives from the disability and rehabilitation sectors, and the community, to achieve a more holistic understanding of the value of rehabilitation. additionally, future research should focus on providing empirical evidence, including economic evaluations, to demonstrate the economic and societal value of rehabilitation. acknowledgements the authors would like to thank the participants for contributing to an improved knowledge base on current rehabilitation practices in south africa. this article is partially based on the primary author’s thesis of the degree of doctor of philosophy in the division of physiotherapy at the faculty of medicine and health sciences at stellenbosch university, south africa, with supervisors dr l.d. morris, associate professor d.v. ernstzen and professor g. mji, received march 2023. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions the authors r.a.m. and l.d.m. contributed to conception or design of the work. data collection and drafting of the article was performed by r.a.m. data analysis and interpretation was carried out by r.a.m., l.d.m. and d.v.e. critical revision of the article and final approval of the version to be submitted was performed by r.a.m., l.d.m., d.v.e. and g.m. funding information this research received financial support from the national research fund (nrf) and the physiotherapy department at stellenbosch university as well as a ninety-one scholarship. data availability the data underlying this article are available in the article. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the 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2022, ‘exploring the meaning of value-based occupational therapy services from the perspectives of managers, therapists and clients’, british journal of occupational therapy 85(5), 377–386. https://doi.org/10.1177/03080226211030095 world health organization, 2023, who_rehabilitation 2023, viewed 03 february 2024, from https://www.who.int/news-room/fact-sheets/detail/rehabilitation. article information author: rose richards1,2 affiliations: 1research and writing laboratory, language centre, stellenbosch university, south africa 2department of psychology, stellenbosch university, south africa correspondence to: rose richards email: rr2@sun.ac.za postal address: 20 van zyl street, somerset west 7130, south africa dates: received: 05 aug. 2014 accepted: 08 dec. 2014 published: 08 may 2015 how to cite this article: richards, r., 2015, ‘celebrities and spiritual gurus: comparing two biographical accounts of kidney transplantation and recovery’, african journal of disability 4(1), art. #151, 10 pages. http://dx.doi.org/10.4102/ajod.v4i1.151 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. celebrities and spiritual gurus: comparing two biographical accounts of kidney transplantation and recovery in this original research... open access • abstract • introduction • chronic illness and popular writing • damaged identities, liminality and redemption • the two biographies    • spiritual regeneration and ‘sins’ of omission    • celebrity makes a comeback on a comeback: cojocaru’s kidney transplants    • making meaning from an unreliable renal redemption • so what about me? • conclusion • acknowledgements    • competing interests • references • footnotes abstract top ↑ background: as a kidney transplant recipient i have long been exposed to a shortage of renal narratives and to a dominant theme in those that exist: transplant as restitution or redemption. my lived experience has, however, shown me that post-transplant life is more complex. even after transplantation, chronic kidney disease requires lifelong health care with varying degrees of impairment, resulting in ongoing liminality for those who experience it. nonetheless, as a transplant recipient i find the restitution or redemptive narrative pervasive and difficult to escape. objective: i examined two seemingly very dissimilar insider renal biographies, janet hermans's perfect match: a kidney transplant reveals the ultimate second chance, and steven cojocaru's glamour, interrupted: how i became the best-dressed patient in hollywood, to explore how the narrators treat chronic kidney disease and transplantation. methods: in addition to a close textual reading of the biographies, i used my own experience of meaning-making to problematize concepts around restitution or redemptive narratives. results: i found that the two biographies are, despite appearances and despite the attempts of one author to escape the redemptive form, very much the same type of narrative. the accounts end with the transplant, as is common, but the recipients’ lives continue after this, as they learn to live with their transplants, and this is not addressed. conclusions: emphasising restitution or redemption might prevent an understanding of post-transplant liminality that has unique characteristics. the narrator evading this narrative form must come to terms with a changed identity and, sometimes, fight to evade the pervasive narratives others impose. introduction top ↑ although there are approximately 45 000 kidney transplants performed a year in the world, making kidney transplants the most common solid organ transplant (davids, marais & jacobs 2014; helman 2007:42), there are few published insider biographies on end stage renal disease (esrd), transplantation and recovery. this is possibly because some diseases have a dimension of a social identity and metaphorical significance (couser 1997; sontag 2001), whilst kidney failure does not carry the same burden of meaning. indeed there is little symbolic value to kidney failure. if an illness carries a metaphorical resonance, people who do not suffer from it can identify with its concerns. if it does not, they cannot that easily do so. kidney failure has the same mortality rate as some forms of cancer and the same success and failure rate post-transplant as many cancers have after radiation therapy (davids, marais & jacobs 2014; national kidney disease education program 2005), but its name does not strike the same chord of fear as cancer's does.1 as a result kidney failure is rendered less visible in society than, for instance, cancer and therefore has an unusual liminal dimension with which to contend. when people do write about their experience of renal disease they tend to adapt their accounts to fit conventional narrative forms. one such form is the restitution narrative (frank 1995), which attempts to derive meaning from ‘biographical disruption’ (bury 1982). this type of narrative is a subcategory of the confessional narrative (frank 1995). the type of restitution may take the form of a benefit (often spiritual) gained from suffering and loss. quite easily this type of narrative may, however, develop into a type of redemptive narrative (mcadams 2006, 2008) as i shall discuss. i see redemptive narratives as essentially comic narratives that are overly simplistic when applied to life events. these types of narratives may be useful to gain a sense of control over such events but, from experience, i doubt that they help one to understand the events because redemptive narratives tend to elide ambiguity. to me it seems glib to use a narrative form that always promises some sort of closure or benefit when one's experience shows that this is not always the case. questions that must be asked of redemptive narratives are, ‘what precisely is being redeemed?’ and ‘at what price is this redemption achieved?’ the redemptive nature of certain restitution narratives underlines their religious or moral nature. often this type of narrative is told by an insider and alternative voice. physical cleansing, purging and healing can easily come to symbolise social, moral or even spiritual equivalents. illness can morph metaphorically into sin and toxins into a spiritual form of pollution (sontag 2001). often in the desire to fit chronic illness experiences to a narrative form and to obtain closure, a writer will try to resolve any lingering liminality. possibly lingering liminality would undermine any attempts at closure most often associated with redemptive narratives. two book-length accounts of esrd, transplantation and recovery have talked about disruption and changed identity. one is by someone who has had a transplant, steven cojocaru's (2007) glamour, interrupted: how i became the best-dressed patient in hollywood. the other is by a family member of someone who has had a transplant, janet hermans's (2006) perfect match: a kidney transplant reveals the ultimate second chance. the first account is a celebrity's tale of changing body image in a world of beautiful people. the second is about kidney transplantation leading to spiritual awakening. their differences at first seem more significant than their similarities; however, they do share certain qualities, not the least of which is that both lives are reconstructed through writing about them to derive value from the experience and to cope with ongoing liminality. i have a particular personal interest in this because i have had a kidney transplant myself and i have finally started to write about my own experiences as part of my autoethnographic doctoral research. it has taken me more than 20 years to reach this point, because i have felt constrained not only by the overwhelming complexity of the experience, but also the narrative restrictions imposed by others on the meaning i am allowed to make. and, quite importantly, i did not previously have the verbal or emotional means to address the weirdness of liminality. even all this time after transplant i still want to hear about other people's transplant experiences, hoping to make sense of my own life through glimpses of others’ lives (richards 2008). my impetus for writing as i have in this article is to see what happens when i use my own long and messy collection of experiences as a lens through which to see those of other writers. i am simultaneously insider and outsider, author and subject, researcher and researchee. initially i sought renal biographies to teach me how to see my own. belatedly i have started using my own experiences to help me understand others’ lives. the two accounts i have chosen deal with the idea of disruption and damaged identity in esrd, transplantation and recovery through the subgenre of the redemptive narrative. looking closely at these two accounts and comparing them to my own was a surprising process. i found it difficult to make up my mind about accounts that were both like and unlike my own, paradoxically complex and simple, complete as narratives, and yet incomplete as depictions of people's lives. i have attempted to capture some of that journey here. chronic illness and popular writing top ↑ at the core of the narrative paradoxes lies the problem of what to do about a serious medical condition. serious illness and its treatments can have a profound effect on our identity, in terms of our sense of who we are individually and how we fit into the societies in which we live (frank 1995; kleinman 1988). this, in some sense, was at the core of my own curiosity. my illness stemmed back to early childhood, although i had my transplant in my early twenties. my kidney condition was always there, like a type of medical invisible companion or a secret sharer, part of every aspect of my life and yet seldom alluded to outside my home. my kidney disease and i developed together. it was not separate from my life ever. once the crisis and (in my case) the transplant surgery is over, a person must return to his or her community and get on with life. but how do you go back after such devastation? and who are you afterwards? i turned to books to find out: biography and social science. it soon became apparent to me that to understand the personal experience of illness and recovery, we need to understand the multiple contexts in which this is addressed and discussed. one such context is popular literature, which is a significant source of information in health care for lay people. this includes not only self-help books, but people trading accounts of similar experiences (helman 2007). i noticed that whilst social scientists appreciate the importance of popular culture to lay people, they tend to treat lay people's accounts as data to support theoretical and philosophical concerns and, as a result, the accounts themselves are often derived from questions the researcher formulates (fox & swazey 1978; 1992; lock 2002; sharp 2006). an alternative is to comment on pre-existing texts, be they autobiographical or literary (bolt 2005; davis 1998; freeman 1997; mclellan 1997; minz 2001). these pre-existing accounts are typically used in discussions about illness narratives to support the theoretical and philosophical concerns of researchers. illness narratives that come into being from the narrator's initiative can provide researchers with pre-existing texts. they are one of the ways in which people with a common experience of illness can share information and benefit from it. such narratives fit narrative genres that are found in other types of life writing (frank 1995; kleinman 1988), a significant form being the redemptive narrative, a subgenre of the confessional narrative. whilst there are not many examples of renal biographies, i had been reading redemptive illness narratives compulsively for years. i did not realise how many i had read until i started making a list and started to see a pattern. my pattern was fairly simple. it had two main categories. the first category was not subversive and included well-known examples of redemptive illness accounts such as jean-dominique bauby's the diving bell and the butterfly (1997) and anatole broyard's intoxicated by my illness (1993). these are the accounts i would feel comfortable openly discussing with other people. the second category was a type of secret, guilty pleasure. it transgressively questions and subverts the redemptive subgenre, by following the narrative trajectory for a while and then undermining it by providing a tragic ending that does not become redemptive, or by providing no closure. it surprises the reader and undermines expectations, causing one to question one's assumptions about illness narratives. lucy grealy's the autobiography of a face and marya hornbacher's (1999) wasted: a memoir of anorexia and bulimia come immediately to mind. i felt as if the authors were speaking directly to me. i longed to find a renal biography that had the same fascination for me. the few i have found are not especially subversive. i chose to analyse two renal biographies that were similar in certain ways. they are both book-length biographies written by insiders (a transplant recipient and the carer of a transplant recipient) for lay people, available as printed books, rather than blogs, poems or photo-essays, which are read in different ways from books. the writers come from the same culture, economic class, country and language group. the transplant recipients have both experienced long-term kidney disease and underwent transplant at roughly the same age (their thirties). this allows me to focus on a limited amount of differences. at first i was amused at the biographies’ dissimilarity. on closer inspection my amusement changed to perplexity. all was not as it seemed. there were strange similarities in the biographies. both were essentially redemptive after all. although they come from very different philosophical contexts the two biographies both show the nature and persistence of liminality resulting from kidney failure and the significance of redemption for people whose identities have been damaged. using illness narrative concepts (frank 1995; couser 1997) as a foundation i shall build an understanding of what liminality and redemption mean in terms of a dread disease. then i shall look more closely at the biographies i selected to see how they treat the idea of liminality in kidney disease and how this relates to the redemptive nature of their biographies. despite having lived through what the narrators describe in their biographies, i have to rely on other research to some extent here, because these two biographies differ from mine in one very important way. both transplantees were well for some considerable time before becoming ill. that part of their experience does not resonate with mine. damaged identities, liminality and redemption top ↑ catastrophic illness has been described as a profound disruption of a life (bury 1982; jordens et al. 2001). after this, life must be re-ordered and a new meaning assigned (kleinman 1988). most illness narratives attempt to create meaning out of suffering in one way or the other to allow people to come to terms with profound losses (kleinman 1988). this can be called therapeutic emplotment (mattingly 1994). i am inclined to think that it can also be called a version of the just world hypothesis (lerner & miller 1978). sometimes the only explanation that people can come up with for such profound losses is that they must somehow have deserved them. if their accounts can show that they have made good, it can help them feel in control and perhaps they can move on. it can make them feel that the experience was not merely random, that it really does mean something and that something constructive can come of it. this also allows them to feel that the disruptive experience is over. i longed for this type of reassurance when i was waiting for my transplant. these people have ‘lived to tell the tale’ and the ritual of writing about this achievement puts it all in perspective. however, i can vouchsafe from experience that, because a narrative is a lens, it allows us to see some things, but not others. shared linguistic repertoires and acceptable narrative plots may serve to silence and oppress (ezzy 1998). they also affect one's identity (denzin 1995). redemption through meaningful suffering and the ideal of an improved life afterwards can become more important than what happened when one was ill or the nuances of who one becomes afterwards. sometimes illness narratives can seem to be ‘so invested in recovery’ that closure may become more important than ‘consideration of what dysfunction feels like and how it alters self-perception’ (couser 1997:294). as meaningful as such an illness narrative might be to the narrator when first telling it, its power wanes because it is not entirely accurate. shortly after my transplant people would often want to know what happened to me. i myself wanted to understand the extraordinary events that had so altered my life and so i told over and over the medical narrative of how i was ill, what i had suffered from, how i had got my new kidney and how well i was afterwards. and whilst telling it i felt muzzled. there were many things i could not identify, that lurked just beyond my frame of perception. there were other things i could not speak about, because it seemed like bad luck or because, as i learned early on, my audience would not want to hear about them. one of the things that slipped through the cracks was a consideration of a persistently liminal identity. according to van gennep (1960) liminality is a temporary ritual state in which one withdraws from society, undergoes purification and then reintegrates into society in a new role. this reintegration is often seen as a type of rebirth. illness can be understood as a type of liminal state because it usually requires that a person be isolated from society to be healed. once someone has withdrawn from society, we expect them to return to society improved by their experiences, literally and figuratively, as if they had left a ritual liminal state. and yet illness is not a ritual. the interaction between the liminal and non-liminal states in society can be seen as a relationship between anti-structure and structure (turner 1969). this is why rituals at the end of a liminal period are so important to impose structure once again on formlessness. in modern western society redemptive narratives might be part of our rituals of recovery that allow people who have been ill to reintegrate into society and to bring an end to their liminal state. such narratives provide closure. however, recovery and reintegration into society might not always be straightforward. certain types of catastrophic illness, such as organ failure and cancer, require long-term tertiary treatment and alter one's future identity. after such a disease has rampaged through one's life one can never again be free of medical treatment and one is rendered vulnerable, because one knows it can happen again. for this reason life after a dread disease can also be described as a type of limbo or liminal state (crowley-matoka 2005; little et al. 1998) or as ‘remission society’ (frank 1995:8). one is usually always one or other type of patient after that, a person with ‘dual citizenship’ (sontag 2001:3) who will ‘zigzag between the kingdom of the well and the kingdom of the ill’ indefinitely (kolker 1996:132). people who have experienced catastrophic illness may continue to live in a state of ‘sustained’ (little et al. 1998:1490) or ‘persistent’ (crowley-matoka 2005:822) liminality, sometimes for the rest of their lives. both renal biographies i consider are compelled to confront the issue of ongoing liminality after a transplant. they deal with this in different ways because it carries different meanings in the biographies, but the outcome is much the same because the significance of this liminality is profound to both narrators. the two biographies top ↑ published biographies become published because there is a perceived readership for them. the two biographies of my title presuppose more than one type of readership. both are aimed at readers who may undergo a transplant, or already have undergone one. they might have relevance for the family and friends of such people too. popular culture can be a powerful resource in health care, with patients turning to other patients to draw on their experience of a disease in order to acquire knowledge about how to cope with its lived experience (helman 2007). however the biographies are also directed at other audiences who are not renal. the celebrity account, by steven cojocaru (2007), is aimed at readers who are interested in hollywood glamour and gossip and who like to follow the lives of famous people. such readers are keen to follow accounts that are exciting, especially if they show the traditional path of how a famous person overcame adversity. cojocaru is a hollywood fashion and celebrity correspondent, who has also appeared on the oprah and dr phil shows. many people would read his book because they enjoy news about celebrities and they want to know more about him. janet hermans's spiritual guru biography (2006) has a specific type of religious readership in mind. the aim of her account of her husband's, hans's, kidney transplant, is ‘to illustrate the love of jesus and the transforming work of the holy spirit through the account of my husband's kidney transplant’ (hermans 2006:xi). its ultimate role is not to inform readers about transplantation, but to encourage them in the practice of a specific type of religious faith. it is difficult to write an account of an illness that avoids incorporating one or other type of narrative form or bypasses any belief system. i have not yet succeeded in doing this. my medical account has developed into a dysfunctional family drama. my redemptive tale has become a quest narrative. any meaning one derives from one's experience of illness is going to be informed by one's own values and cultural context (toombs 1995). additionally, if a biography is to be published it needs to be potentially profitable and this includes having a larger, rather than a smaller, readership and using popular narrative forms. the readers’ cultural context and probable values need to be considered too. for this reason, when one relates an account of illness, one adapts it to some extent to what one imagines the hearer will want to hear (frank 1995; weingarten 2001). i have come to see that the audience co-constructs the meaning of the account and if the account is a confessional one, the audience is the witness. they are intrinsic to the ritual. the reintegration into society and the redemption that would result cannot happen without the one or other type of audience acknowledging the event. because the two accounts are so different from each other in terms of structure and intention, i shall look at them first separately and then compare some points of similarity. to allow space to explore themes i shall focus mainly on three aspects: the titles, the discovery of esrd and life after transplant. in both cases the titles are microcosms of the accounts as wholes. typically in transplant accounts the life afterwards is described as an improvement on being ill (balcita 2011; etherington 1991; klug & jackson 2004) and both biographies i examine do this. in addition to this, both biographies represent life after transplant as different from life before illness and this is where the biographies take on redemptive qualities. they make sense of this in ways that may seem dissimilar at first, but that share some important similarities. spiritual regeneration and ‘sins’ of omission janet hermans's biography uses a parallel chapter structure to explain a religious concept through a real-life event in the form of a parable. it does this through breaking the events around hans's transplant into eight chapters, each dealing with a different stage of the transplantation process and each followed by a chapter that handles a related theme in a christian spiritual process and explains the connection. for example, chapter 4(a) concerns hans's physical transformation after transplant and chapter 4(b) concerns the spiritual transformation that occurs ‘when someone experiences conversion’. furthermore, ‘erik [the donor] models jesus, erik's kidney models the holy spirit’ (hermans 2006:56, 55). each pair of chapters is preceded by short passages from the bible, which focuses what follows. although the renal chapter always precedes the spiritual chapter, the bible verses always precede the renal chapter, effectively sandwiching the renal account between biblical messages that have very clear religious intentions. this shows that the biographical part is primarily a vehicle to illustrate something spiritual. in the end, there is one overarching spiritual journey of redemption. hermans's title, perfect match: a kidney transplant reveals the ultimate second chance, uses typical themes in transplant accounts (perfect match and second chance) to make a connection between her husband's transplant and her religious beliefs. these typical themes are significant because they influence how we portray transplantation. transplantation is typically described as a second chance at life, which can misleadingly make it sound like a type of return or rebirth. one is not born again; instead one's life continues, although possibly not in the way one expected. from my experience, having a second chance at life can be rather burdensome and imbues even the most basic decisions with weighty importance. i feel that a ‘second chance’ implies that one's first stab at life was unsuccessful and that one is now morally obliged to make up for it as if it were one's fault – as if one were so flawed one needed to start over, whilst others were not. receiving a perfect match can also imply a moral responsibility. if one has a second chance, one had better live up to it. hermans keeps her renal and religious sections in separate chapters, preventing readers from inferring that religious beliefs will cure one's kidney problems. in her renal biography, medical problems are cured by medical solutions. however, the renal sections become symbolic: the donor comes to represent christ, the kidney the holy spirit and the recipient the believer accepting redemption. toxins in the blood are equated with pollution in the soul (hermans 2006:53) and in this light it becomes difficult to avoid seeing the sufferer as somehow deserving of sickness. in other words, a logical leap has been made from physical problems to moral ones. it is a short step from this (albeit one that hermans does not take) to saying that if you are ill, you have done this to yourself, because there is something spiritually wrong with you. another theme is that of what illnesses really represent. if kidney failure represents moral turpitude, it could be very easy to see kidney failure and moral turpitude as interchangeable. hermans does not mention the cause of hans's reduced kidney function, possibly because it would take on a symbolic value of sin when seen in the context of the parallel religious narrative. in the light of what the kidney represents – the holy spirit – in hermans's parable (hermans 2006:75), one might be tempted to impose a moral judgement on hans's having flawed kidneys in the first place. hermans occludes this deliberately, saying, ‘the details of my husband's medical record are not essential to this book’ (hermans 2006:xi). hermans also does not talk about how her husband experienced the news that his kidneys were failing, because it falls outside the scope of her account which is about the possibility of salvation and the significance of donation. the renal part of her account is concise and medically oriented, so there seems to be no space for an account of esrd to be told, only that of recovery and redemption. this would be something very personal and subjective that she would have experienced another way, as a care provider, instead of the patient. in addition, the account of hans's esrd could overwhelm the account of the donor, erik's, donation, because with chronic kidney failure people often suffer for a long time and so much relentless misery tends to leave its mark permanently. an account that included a discussion of the impact of kidney failure would, in my experience, render a narration extremely messy. for example, even all these years after transplant i still feel guilty and anxious if i eat previously ‘forbidden’ foods like chocolate or pizza. and even now i am overwhelmed with terror if i have an unexplained spike in my body temperature. although i have a high-functioning transplanted kidney and have had it for over two decades, part of me is still living in esrd. it could be argued that the account of dysfunction is missing only because hermans uses her husband's kidney transplant as a parable to illustrate a religious concept. this makes her account very focused which might arguably lead to ‘sins of omission’. however, it is important to realise that we all edit our scripts for various reasons. no account is ever complete. her account is only about the transplant itself. what happens afterwards? if persons are redeemed through their faith, they must continue to ‘foster the holy spirit’ (hermans 2006:78) as hans must continue to look after his health. in hermans's account one can clearly see the theme of renewal; however it has an undercurrent of uncertainty and an implicit recognition that hans's situation is not that of ‘normal’ good health. in fact an element of contradiction is apparent in her descriptions. ‘hans was a new man transformed by erik's kidney’, she says at first (hermans 2006:53). he is no longer the old hans, full of toxins, but a new and different person. she subsequently says, ‘my husband was restored physically’ (hermans 2006:106). this implies that hans returned to his pre-esrd state, which seems at odds with her previous description and, indeed, with the religious message of her book. the uncertainty of hans's future post-transplant is difficult for her to write about partly because it does not truly fit her parable of salvation. this second chance is not necessarily a permanent state and to sustain it he must take his medications, eat healthily and see the doctor ‘several times a year’ (hermans 2006:73). he has been saved, but his salvation could be taken away at any time. hermans does not explore this, but leaves the reader with this perturbing thought in the final paragraph: ‘hopefully erik's kidney will see hans through this life; we are not sure how long it will last’ (hermans 2006:106). liminality deriving from an illness can be difficult and painful to articulate because it is not neat and tidy, nor is its persistence dependent upon one's behaviour. i see hermans understanding this through her faith and the ‘passage quality of religious life’ (turner 1969:107). if, in one's spiritual belief system life itself is seen as a liminal phase before heaven or hell, that may make it easier to understand life after catastrophic illness as a liminal period. celebrity makes a comeback on a comeback: cojocaru’s kidney transplants typical organ failure accounts begin with the loss of the original organ and end with the (successful) transplant (examples include etherington 1991; hermans 2006; klug & jackson 2004). cojocaru begins his account with the failure of his first transplant and ends it with the tenuous success of his second one. uncertainty is a dominant theme throughout his account, unlike in hermans's. his preface sharply contrasts an amusing dream he has been having (where various celebrities use glamour, hype and beauty products to console themselves about his death) with the ugly and unglamorous reality of kidney failure and a ‘carjacked’ life (cojocaru 2007:xi). his title, glamour, interrupted: how i became the best-dressed patient in hollywood, raises two crucial issues: glamour (for which he is famous) and interruption. the central struggle for cojocaru in his book is how to reconcile his new damaged identity with his old professional persona of celebrity, particularly as his highly competitive fashion career is all about creating perfection. interruption is a form of disruption. it implies that life resumes after the interruption is over. an interruption is, furthermore, by definition, brief. cojocaru treats this idea in a fairly complex way, because he had two transplants. after the first one, he tries desperately to escape persistent liminality and to return to what he knew before (success at this would be the end-point in a typical transplant narrative), but he cannot and he loses his kidney. he treats his second transplant differently. in his first chapters he backtracks to how he discovered that polycystic kidney disease was destroying his kidneys and how he tried to deny this reality, preferring to lose himself in his high-powered job. cojocaru spends a significant part of his book coming to terms with the idea of esrd. he is at first so appalled by being flawed that he retreats into a state of denial that almost costs him his life. his greatest battle is to change his attitude to his new circumstances. ‘i have a disease’ (cojocaru 2007:10), he says, in capitals and in italics to show how overwhelming this news was for him. one reason he rejects the idea of illness so strongly is because of what he does and where he lives. success in hollywood depends on external beauty and perfection. surviving there is all about beautiful veneers. illness is anything but glamorous, as he explains: ‘[m]y situation was unpleasant – a hollywood euphemism for anything yucky, smelly, grotesque, or unattractive. if i went public with my disease, would the a-list turn its back on me?’ (cojocaru 2007:16-17). illness is a type of dirty secret, a hidden pollution, and cojocaru tries very hard to keep it hidden. when he is forced to accept his condition, he struggles to find a kidney and a friend eventually donates one to him. his language during this time is filled with stage and film imagery. he begins by ‘writing the script of [his] kidney transplant as a horror film’. eventually, however, ‘[t]he stage was set’ he says for revealing the truth of his condition (cojocaru 2007:26, 38). and so he reveals his flaw to the public. this is cathartic and imagery of renewal becomes dominant. he is ‘drunk with a sense of rebirth’ (cojocaru 2007:82). however, to have value in his world, he needs to be able to do his job and to be entertaining. he wants to show that ‘people with an illness could work and keep their sense of humour’ (cojocaru 2007:42). he tries and fails. his narrative becomes saturated by irony. cojocaru the narrator is a knowing, ironic voice that has lived by hollywood mores, but who mocks and reveals them. cojocaru the narrated is an innocent who tries to live the hollywood dream. this theme is an ironic reference to his first book, red carpet diaries: confessions of a glamour boy (2003), in which he gives readers glimpses into the extraordinary workings of behind-the-scenes hollywood whilst describing the allure of glamour and his own star-struck awe at being admitted to the inner circle. however his persistent denial about the seriousness of his condition and the finality of the losses he has sustained causes him to treat his new kidney roughly and he loses it. he is still trying to live the movie plot: i was going to pick up right where i left off seven months earlier, put my life back on like a perfectly cut french suit. everything would happen according to my master plan, no restrictions, no change of habits. it was suffer the transplant, go on oprah and you're cured—almost like oprah was a shaman who had given me the final healing i needed. (cojocaru 2007:87) his elderly mother donates the second kidney and this time, filled with guilt and fear, he tries to treat his transplant differently. not only does he have to master a complex medical regime, but he has to re-evaluate his glamorous life in the face of bodily frailty and imperfection. in the course of his book he battles to come to terms with what has happened to him and his life and to accept that he can never go back to what he was before. at the end of his book he attempts to gain a type of closure and meaning from his experiences. his last chapter describes his return to health in a different way from his first transplant: ‘the real pain comes afterwards, when you get back to your life’ (cojocaru 2007:152). this time around he knows the life he knew before is over and his reference to ‘getting back’ to his life is ironic, because he knows he cannot go back to his life in the sense of returning to inhabit it. instead he returns to assess and to change it. previously, on moving to hollywood he had reinvented himself through fashion (cojocaru 2003). now he reconstructs himself through writing to obtain meaning from his circumstances. he has to accept a truth that has been almost unbearable: ‘unlike the movie star i'd always been in my own mind, the real me was flawed’ (cojocaru 2007:155). he ends his account with, ‘it didn't matter what i didn't have. whatever i had was enough because i was alive’ (cojocaru 2007:155, emphasis in the original). however, this in itself is an often-used movie plot. he attains a degree of acceptance in coming to terms with not having what he had wanted. nonetheless he is still keenly aware of his loss and his changed identity. who he is now is not really unpacked. perhaps the reality of being permanently changed is still unspeakable to him or maybe the aim of his book is to achieve coherence, not necessarily to explore below the attractive and entertaining surface. maybe his identity is elusive to him because it is still liminal. perhaps he views himself as work in progress. he is not who he was and yet, unlike then, he is now well. he is also between states, as he explains: ‘disease doesn't go away, even when it's gone’. he feels separated from other people by his experience: ‘i wasn't like other people anymore’ (cojocaru 2007:148, 151). his writing style is journalistic, which allows him to name-drop and opens a door on a lifestyle that most of his readers would not experience. he makes it seem very exciting and desirable, but never allows the reader to imagine that the veneer of hollywood is anything other than a veneer. one of his battles in his account is to accept that surface is not everything and that once that surface is damaged meaning has to be found elsewhere. this is what makes the ending of his account so elusive and the strategies of coherence so ironic. part of cojocaru's professional reputation is built on irreverence for the structures of which he is part and this serves him well in his book. his final paragraph explains that ‘life is not a movie’ (cojocaru 2007:155). he sets up his account as if it was one and then he undermines it with the untidiness of everyday life. despite his irreverence he nonetheless constructs meaning in a fairly typical way: having to put aside the idea of bodily perfection, he seeks spiritual enlightenment, as in many hollywood films. in the end he attains a familiar type of moral from his tale: riches and beauty are fleeting and do not necessarily bring happiness. happiness must be found in other things. he concludes that he has a chance to live and that all the suffering has made his family a stronger unit. this is a type of redemption that allows him to escape the damnation of permanent physical imperfection. his account is difficult to pin down in that he takes a narrative convention and twists it, but then, to some extent, untwists it. his account is uniquely his own, but also relevant, despite his extraordinary lifestyle, to many people. he creates a vivid picture of his circumstances, both health and professional, by using humour and juxtapositions that can be shocking. a favourite device of his is to use beauty and ugliness together and it emerges as a theme in his book that he traces back to his parents having fled romania and having to present a façade of normalcy to survive. amidst so much pampering and prettiness the medical experiences attain a type of brutality that is visceral. hermans elides the brutality of such experiences, possibly because it could distract the reader from the redemptive ending. cojocaru uses humour as a defence mechanism. humour and disavowal are the means through which he speaks about the unspeakable. this creates an ironic type of limbo for his understanding about changed identity, where the precise nature and extent of his understanding is unclear, because much of it is implicit and therefore not overtly stated. his account goes beyond a simple tale that is invested in recovery to one that considers to some extent what the cost of such a recovery and any type of redemption is. making meaning from an unreliable renal redemption initially i found an account of hollywood glamour and an account of spiritual redemption dissimilar. the most obvious difference was in their world views. the spiritual guru account by hermans sees the world through a religious christian lens and the celebrity one by cojocaru is a hollywood comeback narrative. but they do share certain qualities. these are the main ones. the narrators are middle class residents of western countries, so their biographies show middle class, western concerns of atoning for perceived sins and the importance of being able to help oneself. there are other similarities. both transplantees became seriously ill as adults, after being relatively well before then. because of this, illness is indeed a disruption in their lives. for this reason life after transplant can to some extent be described as recovery or ‘being restored’ (hermans 2006:106). ‘normalcy’ for both transplantees is health. when the transplantees’ health is taken from them, the narrators perceive them as being in need of redemption. cojocaru expresses this in so many words: ‘oh no! it's my fault!’ (cojocaru 2007:112, capitals in the original). when his doctor manages to allay this fear, it re-emerges in throw-away remarks about ‘karmic fashion police’ and his not fitting his designer clothing (in which he vests so much of his public and private identities) anymore after his medication causes weight gain (cojocaru 2007:113). he is no longer who he once was. not only this, but more significantly, both of them for different reasons describe illness as pollution. hermans refers in her book to ‘toxins’ and the need for literal and figurative purification (hermans 2006:55). from this, one can deduce that she sees real-life illness as ‘impure’. cojocaru describes his kidneys as ‘rotting’ (cojocaru 2007:18). illness carries profound metaphorical and moral weight for both of them, as it does for many (sontag 2001). hermans and cojocaru treat the ordeal of illness as a type of test of character, which helps them to derive meaning from it. however, if illness is seen as disruption as in parsons's still-pervasive model (1951) and pollution, it can very easily be associated with sin or punishment. this could be why both books carry an element of a redemptive moral tale. ultimately both books are focused on recovery, but the recovered lives are irrevocably altered. resistance to this change causes tension in both books. part of the reason for this resistance lies in the type of account they tell. in many texts, both the parable and the hollywood comeback narrative are redemptive narratives that control and order meaning through their structures and create an attractive surface that conceals tensions. these tales of renal recovery are no different. both types of narrative require a belief in a certain type of agency: if you try hard enough and do things in the right combination you will be forgiven and allowed to return to ‘normalcy’. the hollywood idea of a meaningful life and transcendent value has become a popular culture replacement for traditional religious beliefs. whilst cojocaru's book provides an ironic counterpoint to hermans's, he still to some extent accepts that confessing is part of the process. in hermans's account redemption offers the promise of eternal life, although she is aware that her husband's transplant may not last forever. cojocaru is similarly aware that his transplant's success cannot be guaranteed. possibly because he has already lost a transplanted kidney he focuses more on this. nonetheless both of them attempt to tie up the loose ends by imposing a redemptive narrative structure on their experiences. trying too hard at this can occlude liminality, but it does not, of course, eliminate it. liminality's persistence can be found in the traces of perturbation that remain in the text in hermans's uncertainty about her husband's future health and cojocaru's unexpressed loss. it is also understood through both narrators’ recognition that the transplantees can never return to who they once were. a new life requires a new identity, but by the end of both books the transplantees still vacillate between being ill and well and between who they once were and who they hope to become. so what about me? top ↑ transplantees always compare numbers. if we are not comparing our creatinine levels, blood pressure and medication dosages, we are comparing how long we were ill or how long we have had our kidneys. especially the latter. i was ill for much longer than either transplantee i have been discussing (22 years) and now i have been well post-transplant for much longer than both added together (23 years). ‘normalcy’ for both the other transplantees is health. when their health is taken from them, the narrators perceive a need of redemption. i perceive this as being strange. for me esrd was just life. not pleasant, but life as i knew it. i had grown up with it and with its attendant doctor visits, blood tests medication and diet. i often find it strange being well: it seems too simple, somehow. and also violent and chaotic. everything is more intense. good health really is rude. i still feel as if i am waiting for something to happen, perhaps the advent of normalcy. i hope i shall recognise it when i attain it. the liminality i experience has a different quality now than it did, say, 15 years ago. back then it was the heady anticipation of increased levels of well-being. my health improved steadily for the first five years. each time i thought i was as well as any human being had a right to expect, my creatinine levels would drop or my medications (and hence their side-effects) would be reduced and i would improve. every morning i awoke for the first eight years post-transplant i was filled with awe and gratitude for my new and bounteous health that i feared might disappear without warning. somewhere in the decade that followed i became used to my bounty. these days when i wake up in the mornings the first thing on my mind is usually much more prosaic: a concern about work or wondering about whether i have time to doze a little longer. the question on my lips these days no longer concerns existential matters, but rather whether i should have muffins or muesli for breakfast, earl grey tea or darjeeling. friends tell me that this is what being well is. apparently you expect health and are not surprised by it. and yet i am still in a liminal space. i still go for doctor's visits, take my medications, and have blood tests. i should keep to a diet better, but here again my liminality raises its head. when i see previously forbidden foods (the list was immensely long as renal diets are very restrictive) i cannot help eating as much as i possibly can, as if i may not be able to have more tomorrow. all the while, i mentally weigh the amount of renal-unfriendly protein, salt, cholesterol and potassium, thinking, ‘bad, bad, bad’. i recently missed an outing with friends and my chief regret was that they had had prawns for lunch and i had not, although i can buy prawns and eat them whenever i want. not too long ago my doctor suggested i lower my cortisone dose to a tablet every second day. i have taken daily medication since i was seven and have been responsible for it since i was nine. i claim my medications have the same emotional charge as brushing my teeth or taking a vitamin supplement. but this is not so. lowering my dose by 5 mg filled me with such superstitious dread that every slight fluctuation in temperature, every bit of fatigue seemed the harbinger of kidney failure or rejection. i took my pulse, my blood pressure, my temperature at every hint of a change in my physiology. i palpated my kidney. i emailed all my friends about it. i barely slept. despite my alarm, my condition remained stable. i was surprised. and so i continue, a patient and yet not a patient, well and yet not, able-bodied and yet disabled, treated and not cured, healthier than i have ever been, thanks to a part of a stranger's body that somehow has managed to live in mine for over 20 years. like hans, i do not know how long my kidney will last. i do not know how long i will last either. like cojocaru i know that whatever i have is enough because i am alive. i suspect this has prevented me from reaching for what i want in life. that and my overwhelming instinct to save my energy and protect my health at all costs. during my phd research i simultaneously worked and studied full time and i managed this longer than i thought possible. one year, however, i became quite run down and towards the end of the year fell seriously ill with complications resulting from chicken pox. my kidney survived that too. it was (i think) the only organ in my body not to be affected. (it could be that my donor had chicken pox, but i shall never be able to confirm that because my kidney is a non-related, non-living transplant.) that surprised me, but not nearly as much as the ease with which i adapted to my lengthy sick role again or how at home i felt in the hospital although i was hospitalised in a foreign country and had not been admitted to hospital since 1992, a year after transplant. only much later when talking to friends who were concerned that i had been lonely (i had not been), did i realise that i had not been at all concerned about being in an isolation ward. true, i was very ill, but i was also unperturbed by my captivity. i had no television and so i amused myself playing with the electric bed adjuster. last time i was in hospital we had had to adjust our beds with a pedal and the novelty of doing this with the flick of a button diverted me for many hours. i was quite content to be fed and examined, sometimes simultaneously, for days. it made me feel safe. that perturbs me now, because all the well people i know shudder at the thought and it reminds me that even after all these years i am not really one of them. i have been writing about my journey at last, because enough time has passed to give me the necessary distance and to make the task less overwhelming. in writing my own book-length account, i have been struck by how difficult it is to make a narrative that is both meaningful to me and a true reflection of what happened. it is easy to fall into conventional patterns of meaning-making and i find them ultimately unsatisfying. when one writes about one's experiences, one is creating meaning from one's suffering. but does this rob one's life account of complexity? the idea of suffering redeeming one, having a purpose or making one a better person might be attractive, but life is too messy for that and liminality too complex. i continue to wrestle with this. i wonder if there is a period after transplant when one stops being liminal. possibly life itself is a liminal period for everyone and yet this liminality is only recognised when something extraordinary happens. for many of my fellow transplantees liminality is something that they only become aware of when faced with mortality. they remember normal good health by contrast as being a stable period. for me health itself is unstable and ever changing. living this way feels liminal to me, a constant state of flux and violently surging chemical processes. i did not recognise hunger when i first felt it after transplant. i thought the stomach pains i got at lunch time were a sign of dreadful complications or side-effects to my new medications. it still startles me and my reflex response is to treat it as if it were a problem that must be medicated with food. but, despite all the complexities and uncertainties of my new life (as i still think of it), i do not long for the ending of liminality as some of my fellow transplantees may, so much as the continuation of it. conclusion top ↑ whilst the impetus for writing cojocaru's and herman's accounts was different for the narrators, ironically both the parable and the hollywood drama are redemptive narratives that attempt to control and order meaning to create coherence and tidy up the messiness of lingering liminality. when one writes about one's life, one is creating meaning. the audience expects it. however, a danger i see in an account that suggests life is somehow better or more profound after a catastrophic event, is that it positions the narrator as a guru who has unique access to the truth and makes the account a moral tale. to some extent, both accounts i have discussed do this. this idea of suffering redeeming one, having a purpose or making one a better person might be attractive, but life is too contingent for that. i too want redemption, but all these years after transplant my perspective has changed. i have come to see that although society may expect me to emerge from my liminal stage in a new role, improved and whole as parsons (1951) described, this is not really possible for someone in my state. paradoxically i also see that my experience is normal. i do not need to seek redemption or to try to escape liminality. i think i would be disquieted if the questions in my life were suddenly resolved. i would not know what to do with myself. i feel ambivalent about liminality, but i suppose one would. it is, after all, such an ambivalent state. ironically, at this point in my life post-transplant, i seem inadvertently to have achieved some shaky sort of closure after all. i take comfort in the fact that if the past is anything to go by this is likely to change in the future. another two or so decades down the line and i am certain my views on the matter will have changed again. but that is what chronic illness is – the long distance run. if you live with something your whole life your demeanour towards it will change. from experience i can assure you that it is frightening exploring your own version of persistent liminality. you might fear that you are living in-between worlds because you are doing something wrong. because of this, i think we need more research on the different types and stages of liminality after catastrophic illness, especially a kidney transplant. acknowledgements top ↑ i thank the reviewers for their insightful comments, some of which will certainly lead to future projects and all of which helped refine the article and develop it further. their shared interest in my field is most encouraging. competing interests the author declares that she has no financial or personal relationship(s) that may have inappropriately influenced her in writing this article. references top ↑ balcita, a., 2011, moonface: a true romance, harper perennial, new york. bauby, j.d., 1997, the diving bell and the butterfly, knopf, new york. bolt, d., 2005, ‘looking back at literature: a critical reading of the unseen stare in depictions of people with 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above) use in the literature. other types of organ failure can be seen (wrongly) as more life-threatening than kidney failure. possibly this is because one can receive an entire kidney from a living donor and there is the back-up of dialysis for people with access to resources. in addition, people may find it easier to understand heart disease than kidney disease, as we are aware of our heart-beat and of any changes in it. the heart's symbolic value is immense: it is the site of love, life and energy. kidneys are quite invisible by contrast. abstract introduction research methods results of the research discussion of findings conclusion acknowledgements references about the author(s) sifiso l. zwane ministry of education and training, mbabane, swaziland matome m. malale department of abet and youth development, university of south africa, south africa citation zwane, s.l. & malale, m.m., 2018, ‘investigating barriers teachers face in the implementation of inclusive education in high schools in gege branch, swaziland’, african journal of disability 7(0), a391. https://doi.org/10.4102/ajod.v7i0.391 original research investigating barriers teachers face in the implementation of inclusive education in high schools in gege branch, swaziland sifiso l. zwane, matome m. malale received: 15 may 2017; accepted: 17 aug. 2018; published: 06 dec. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the kingdom of swaziland is a signatory to policies on universal education that ensure high quality basic education for all. education for all is a commitment to provide equal opportunities for all children and the youth as provided for in the country’s constitution of 2005. the tone for the introduction of inclusive education in swaziland was inevitably set by the new constitution of 2005. since then several policies have been produced by the government, all aimed at providing equal education opportunities to all children in the country. these policies include the swaziland national children’s policy (2009), poverty reduction strategy and action plan (2006) and draft inclusive education policy (2008). the education for all policy (2010) is the policy that upon implementation became a stimulus for the introduction of inclusive education into mainstream schools; as a result, all teachers in the country’s schools were expected to be competent enough to teach learners with a wide range of educational needs. however, in-service teachers received inadequate staff development and training ahead of the implementation of inclusive education and a majority of teachers were not professionally developed for inclusive education, as pre-service students at tertiary training level. objectives: this study investigated barriers in the implementation of inclusive education at high schools in the gege branch, swaziland, with a view to finding lasting solutions to inform research and government policy. method: this research is a qualitative interpretive case study based on selected schools in the gege branch of schools. data was obtained through semi-structured research interviews and document analysis. it was processed and analysed through data coding, unitising, categorising and emergence of themes, which became the findings of the study. results: lack of facilities in the governments’ schools and teachers’ incompetence in identifying learners facing learning challenges in their classrooms are some barriers to inclusivity. conclusion: the study concludes that there is a need for the ministry of education and training to craft an inclusive curriculum in line with the inclusive policy in order to cater for the diverse educational needs of all learners in mainstream schools. it is thought that instituting a vibrant in-service and pre-service teacher training programme by the ministry of education and training will increase teachers’ capacity to a level where teaching in inclusive classrooms does not negatively affect their competence. introduction according to donald, lazarus and lolwana (2002:4) ‘barriers to learning’ refer to any factors, either internal or external to the learner, that cause a hindrance to that person’s ability to benefit from schooling. researchers have found that implementation of inclusive education from policy to practice is often met by many barriers in countries where studies have been conducted (donald et al. 2002:4). swaziland is a signatory to policies on universal education that seek to ensure the provision of high quality basic education for all. education for all is a commitment to providing equal opportunities for all children and youth as stipulated in its highest piece of legislation, with a view to affording equal education opportunities to all children in the country. several other international and local legislations have been signed by swaziland. these policies commit the country to providing inclusive education in our school system, including the salamanca statement, framework for action on special needs (united nations educational, scientific and cultural organisation [unesco] 1994). the constitution of the country states that every swazi child within 3 years of the commencement of this constitution has the right to free education in public schools at least up to the end of primary school, beginning with first grade. moreover the swaziland constitution (2005:25) stipulates that compulsory inclusive basic education be provided free for all children in the country, irrespective of gender, age, life circumstances, health and disability, stage of development, capacity to learn or financial circumstances. by signing the aforementioned international and local policies, swaziland pledged its legal commitment to implementing inclusive education in mainstream schools. the extent to which the swaziland government has domesticated the aforementioned international inclusive education policies attests to and affirms the commitment of the ministry of education and training to the provision of quality education for all learners in the country. not many studies have been conducted in swaziland in relation to how effectively inclusive education has been rolled out to schools. however, the few studies that have been found do point out that the ministry of education and training in the country is facing some challenges in implementing inclusive education effectively in mainstream schools. these studies include ‘challenges in the implementation of inclusive education at elulakeni cluster primary schools in shiselweni district of swaziland’ (2015) and ‘supporting teachers to implement inclusive education in the kwaluseni district, swaziland’ (2012). against this background the main problem of this study can be stated as to determine barriers in the implementation of inclusive education in schools in the gege branch, swaziland, in order to discover how best these barriers can be overcome. the problem has been investigated by, among other means, reviewing literature from related studies. the literature expounds on the pedagogical and curriculum factors, inappropriate assessment procedures, teacher training barriers to effective teaching and learning, unqualified and underqualified teachers, lack of support for teachers, and inappropriate teaching and learning methods and support material. curriculum delivery barriers to learning the curriculum and teaching methods used by educators play a pivotal role in as far as attaining effective teaching in inclusive classrooms is concerned. however, a rigid and inflexible curriculum that does not allow for individual differences can lead to learning breakdown (motitswe 2012:39). negative effects on education include aspects such as lack of relevance of subject content; lack of appropriate learning materials, resources and assistive devices; inflexible styles of teaching and classroom management; and inappropriate ways of assessing learning. motitswe (2012:39) further notes that one of the most serious barriers to learning can be found within the curriculum itself and relates primarily to its inflexible nature. this prevents it from meeting diverse needs among learners; hence the curriculum should be adapted to suit all learners and the principle of learner-centeredness must also be taken into consideration. the inflexible nature of the curriculum prevents it from meeting learners’ diverse needs. in research by zimba (2011:53) at a pilot inclusive primary school, he discovered that the curriculum used at the school was not modified to accommodate learners with a wide array of educational needs. teaching pupils with learning disabilities (ld) using mainstream techniques makes learning and teaching a challenge for the teacher and the learner in an inclusive class. for instance in a curriculum adapted for so-called normal learners, a teacher can teach pupils by writing on the board. however, this is not applicable in the case where some pupils cannot see. the use of concrete objects must therefore be emphasised in the inclusive curriculum for all learners to benefit (zimba 2011:54). inappropriate assessment procedures assessment refers to the ways teachers and other people involved in a pupil’s education systematically collect and then use information about that pupil’s level of achievement and/or development in different areas of their educational experience (academic, behaviour and social) (watkins 2007:15). the central purposes of assessment are stated as providing information on learner achievement and progress and improving the process of learning and teaching (department of education 1998:4). among some assessment procedures regarded as inappropriate are the following. aptitude achievement discrepancy batsche (2006) argues that although early studies suggested that a significant discrepancy between intelligence quotient (iq) and achievement demarcated unexpected underachievement, this hypothesis has not held up. in the most extensive studies involving children with ld, comparisons of groups defined as iq-discrepant and non-discrepant poor readers do not show meaningful differences in prognosis, cognitive skills related to the reading process (such as phonological awareness) or instructional response once definitional variability is accounted for in the models (stuebing et al. 2002). unlike rutter and yule (1975), these studies generally exclude children with intellectual developmental disorders and brain injuries, who accounted for the ‘poor reader’ group in that study. there are also major psychometric problems attributable to the small measurement error of iq and achievement tests, the fact that math and reading scores are normally distributed in the population and other factors that make most testing models based on a single assessment unreliable for identifying ld (stuebing et al. 2002). cognitive skills according to batsche (2006:72) another proposed marker of unexpected underachievement is uneven development of cognitive skills such as phonological awareness, rapid naming and working memory. to some extent, this position is based on the individuals with disability act (idea) statutory definition, which associates ld with ‘a disorder of psychological processes’. a person might be identified as having ld if he or she showed low achievement and strengths in some aspects of cognitive processing. this model was not encouraged by idea 2004, and no provisions have been made for it in the regulations. in fact, idea has never made routine assessment of cognitive processing part of the regulations because of the absence of evidence that these assessments provide unique information for identification and treatment planning, despite the routine use of these forms of testing in assessments of ld. firstly, such assessments should not be used to identify children as having ld in the absence of evidence of low achievement. thus, a child who has poor performance on a phonological awareness test, but average reading, is likely a false positive error (torgesen 2002). underachievement is unexpected in ld and poor test performance on a measure of cognitive or neuropsychological functioning should not be taken as evidence of ld unless it is linked to the achievement domain. it is also important to remember that poor performance on measures of academic achievement is most assuredly evidence of a cognitive deficit. there are few cognitive skills about which more is known than, for example, word recognition (schlaggar & mccandliss 2007). pertaining to assessment as a means to identify learners with ld, batsche (2006:72) suggests that the classroom teacher may screen for those students who are at risk of having oral expression and/or listening comprehension difficulties by referencing norms for oral expression and listening comprehension acquisition. a speech-language pathologist should be the one to assess and determine deficits in these two areas. this is not expertise most schools have, as such inappropriate methods are used. inappropriate methods refer to assessment methods used to assess learners who do not experience learning difficulties. the standardised tests used by most teachers, for instance, provide the speech-language pathologist with valuable information regarding the student’s communication skills in specific areas. however, we must realise that standardised assessments may be one component of an assessment process. the use of non-standardised or informal assessments, dynamic assessment, behavioural and pragmatic observations in the ‘natural environment’ (outside of the classroom) as well as spontaneous and structured language sampling also provides important information that standardised tests by themselves may not. according to landsberg, kruger and nel (2005:46) the professional should not be engaged in the assessment of the learner but the focus should at all times be on assessment for learning. this means that it is important to break away from the performance-oriented perception of assessment when dealing with a learner who is experiencing a learning difficulty of some kind. it is this researcher’s observation that without an inclusive curriculum in place, teachers in the country find themselves using assessment methods that do not take into account the needs of learners with special needs in their classrooms. teacher training barrier to effective teaching and learning according to bagree and lewis (2013:2) teachers are often simply not trained or supported to teach children with ld, which makes these children among the most marginalised in terms of educational opportunity and attainment. national standards for teacher training can vary considerably between countries and are often inadequate. teacher training for regular teachers also rarely prepares teachers for working in diverse classrooms and in particular does not equip them with the confidence, knowledge and skills to effectively support learners with disabilities. this is a key reason why so many children with disabilities remain out of school or excluded from the learning process within school. bagree and lewis (2013:4) further argue that if we are to reignite progress towards quality basic education (early childhood, primary and lower secondary schooling) for all, then regular teachers need to be prepared to meet the learning and participation needs of children with disabilities. to do this they need to be given appropriate initial training, ongoing training and professional development, and ongoing access to adequate high quality support and advice from specialist personnel. a study by mahlo (2011:161) reiterates that most classroom teachers indicate that they need intensive training in inclusive education so that they are able to support learners with special educational needs (sens) in their classes. the classroom teachers were frustrated by situations that they were unable to handle, such as abuse children had experienced. research further reveals that teachers who have not undertaken training regarding the inclusion of students with disabilities and special learning needs may exhibit negative attitudes toward such inclusion (van reusen & barker 2001), whilst increased training was associated with more positive attitudes toward the inclusion of students with disabilities (powers 2002). training in the field of special needs education appears to enhance understanding and improve attitudes regarding inclusion (kuester 2000). introductory courses offered through teacher preparation programmes may sometimes be inadequate in preparing the general educator for successful inclusion (beattie, anderson & antonak 1997). sometimes educators, often through inadequate training, use teaching styles that may not meet the needs of some of the learners. an educator may teach at a pace that only accommodates learners who learn very quickly. alternatively, the pace and style of teaching may limit the initiative and involvement of learners with high levels of ability. what is taught or the subjects that learners are able to choose may limit the learner’s knowledge base or fail to develop the intellectual and emotional capacities of the learner. such barriers arise when sufficient attention is not given to balancing skills that prepare learners for work (vocational skills) and skills that prepare the learner for coping with life (life skills) (department of education 1998:7). some learners are excluded from certain aspects of the curriculum as a result of ignorance or prejudice. for example, learners with physical disabilities are often prevented from playing sports or are not given the opportunity to do so. similarly, male and female learners are encouraged or pressurised to take certain subjects at school or at tertiary level according to their gender because those subjects will equip them for jobs that are stereotypically undertaken by men or women (grossman 2004:209). unqualified and underqualified teachers according to savolainen (2009:16) teachers play an essential role in quality education and thus the quality of an education system cannot exceed the quality of its teachers. studies show that teachers become more willing participants in inclusion when they view themselves as competent and prepared to teach students with disabilities. hull (2005) reiterates that training needs to continue to provide assistance with differentiated instruction and with modifying and adapting curricula to meet various students’ needs. the development of educators, service providers and other human resources is often fragmented and unsustainable. the absence of ongoing in-service training of educators, in particular, often leads to insecurity, uncertainty, low self-esteem and lack of innovative practices in the classroom (department of education 1998:11). this may result in resistance and harmful attitudes towards those learners who experience learning breakdown or towards particular enabling mechanisms. teachers and researchers often express concerns about training when discussing the abilities of teachers to cater for the diverse needs in inclusive classrooms. loreman and harvey (2005) argue that inclusion failed because in part, teachers were unable to meet the demands of modifying and delivering an appropriate curriculum to children with diverse educational needs because of incapacity. barriers resulting from fear and lack of awareness may arise from the feelings of educators themselves. for example, learners with high ability are often regarded as a threat and therefore face denial of their significant abilities by unqualified and underqualified teachers. studies conducted post-implementation of inclusive education in swaziland reveal that a vast majority of teachers in the kingdom’s schools are either not trained or underqualified in inclusive education; hence they feel they are inadequately prepared to teach in an inclusive classroom. according to a study by zimba (2011:52), lack of teacher training in some inclusive schools in swaziland has resulted in challenges in dealing with administrative requirements, as neither the administrator nor teachers were found to be competent with an inclusive curriculum. training offered to teachers at the pioneer or pilot schools was lamented by most teachers as they felt 1 week of training was not enough to cover the vast and complex content and methods of the inclusive education field. lack of support for teachers support can be defined as all activities that increase the capacity of a school to respond to diversity (mahlo 2011:54). a supportive environment where there is collaboration among teachers, district officials, principals, parents and learner support for teachers is crucial for successful implementation of inclusive education. support may involve a group of colleagues who are available to assist learners experiencing barriers to learning; therefore, educational support services need to be organised and the roles of all players in the implementation of inclusive education clearly defined (calitz 2000:16). according to pijl and meier (1997:9) inclusive education can only be successful if teachers elicit an attitude acceptable to all learners and when they have sufficient support and resources to teach all learners. teachers in the kingdom of swaziland are to a large extent lacking this support as the ministry of education and training has only recently established structures for teacher support. for instance, a bachelor’s degree in inclusive education was introduced at the southern africa nazarene university in the year 2012 as well as inclusive education courses in the other teacher training colleges. whilst this is a positive step towards capacity building, a large number of teachers who are already in the field still feel they lack the skill and the tools to teach learners with diverse needs because most of them never received training in inclusive education, whilst capacity-building workshops have not been able to reach a majority of teachers in the field. according to fakudze (2012:74) lack of support for teachers is characterised by lack of state funding for inclusive education programmes and provision of in-service training for teachers that can empower them and so lead to a change in their attitudes towards inclusive education. fakudze (2012) further argues that teachers upgrade themselves at their own expense on a part-time basis. moreover, government does not reward teachers’ achievements through properly remunerating them after obtaining appropriate qualifications. in addition, the ministry of education and training has failed to provide schools with specialists in areas such as braille, hearing specialists and learning difficulty specialists to mainstream inclusive schools. in a study conducted by mahlo (2011:176) in gauteng province in south africa, interviews revealed that the school-based support teams (sbst) lacked the knowledge and skills to assist learners and teachers and yet empowering the sbsts could be one strategy to enhance the implementation of inclusive education. inappropriate teaching and learning methods and support material according to le fanu (2005), in terms of knowledge, teachers need to be aware of the different forms of diversity to be found among children. these include gender difference, linguistic, cultural and ethnic diversity, social–emotional diversity, cognitive and academic diversity and sensory and physical diversity. many of these diversities are interconnected and also embedded in various contexts. for instance, it is not possible to understand the problems faced by girls in schools without considering the impact of some traditional beliefs on the ways they are regarded and treated. as webster (2004:1) indicates, schools in papua new guinea can perpetuate and exacerbate repressive attitudes but schools can also be a ‘ladder of opportunity’ for girls as well as boys. the impact of inappropriate teaching and learning methods can be demonstrated in a study conducted in a primary school in botswana. during class observations, mukhopadhyay, molosiwa and moswela (2013:5) observed that teachers were using the teacher-centred method, which did not cater for individual differences. their lesson notes were scanty without clear evidence on how they would meet the learning needs of learners with sens. none of these teachers employed instructional accommodation during teaching and learning. another interesting finding was that some of the teachers preferred to use setswana when interacting with learners with sens during the lesson. post-observation interviews revealed that teachers felt that learners with sens did not comprehend well when instructed in english. the data suggested that the teachers were operating within the deficit model, which views student with disabilities as ‘incapable of learning’. mukhopadhyay et al. (2013:6) also observed that at a school with a long history of practising inclusive education, regular teachers collaborated well with special educators. their teaching approaches were ideal because they employed instructional adaptations and strategies such as (1) large fonts for learners with visual impairments and (2) peer-tutoring to meet the learning needs of individuals with visual impairments. the culture of teaching at this school also emphasised team-teaching, instanced by the presence of regular and special educators who shared teaching responsibilities. the juxtaposition of these scenarios highlights the effectiveness of appropriate teaching methods against inappropriate ones. in a study by najjingo (2009:45) key respondents and teachers agreed that the lack of instructional materials affects the access to all-inclusive education, where learners are supported by parents 100%. this phenomenon is directly related to poor macro policy on these materials and the high costs on the open market. the critical lack of instructional materials means that though inclusive education is in place, when children with sens lack learning aids and support appliances, their mobility is reduced and they feel inferior to their ‘normal’ peers (najjingo 2009). they have to continuously play catch up. as a result, their pace in learning becomes slow because they are not able to hear, see or express themselves properly or because they write more slowly than other children, and learning at unfriendly facilities results in many of them failing to pass exams. it is evident in this literature that use of inappropriate teaching and learning methods and support material negatively impacts the process of implementing inclusive education. research methods the approach selected for this study was the qualitative research approach to get more information on the barriers teachers face in the implementation of inclusive education in high schools in swaziland. the selection of this approach was based on the nature of the research problem and the characteristics of qualitative research that are applicable to this research. a case study was selected as a design for this study. according to mcmillan and schumacher (2006:398), a case study design data analysis focuses on one phenomenon that the researcher selects to understand in depth, regardless of the number of sites or participants. data was obtained through semi-structured research interviews and documents analysis, processed and analysed through data coding, unitising and categorising, wherein the themes that emerged became the findings of the study. this research study being qualitative and a case study in nature employed social or realist constructivist methods. social constructionism may be defined as a perspective that believes that a great deal of human life exists as it does because of social and interpersonal influences (owen 1995:1). according to fetterman (1998:207) knowledge is socially constructed as the researcher and the researched (teachers) interact in a natural setting. hence, in order to investigate the research problem, teachers were interviewed and interacted with in their respective schools. population and sampling population refers to a group of elements or cases, whether individuals, objects or events, that conform to specific criteria and to which we intend to generalise the results of the research (mcmillan & schumacher 2010:129). the target population of this study comprised high school teachers in the gege branch of schools. there is a total number of three high schools in the branch. the gege branch was selected because it is, like the rest of the country, one of the branches earmarked to mainstream inclusive education. sampling was performed on the population of teachers from two schools selected as the case study of the research. according to trochim (2006), sampling is the process of selecting units from a population of interest so that by studying the same we may fairly generalise our results back to the population from which they were chosen. a researcher may use various forms of sampling techniques such as random, probability, proportional, systematic, cluster, convenience and purposive sampling, among others (creswell 2005:204). purposive sampling was used in this study. this method of sampling involves the deliberate selection of a small number of information-rich cases from a larger population for in-depth study (mcmillan & schumacher 2010:399). mcmillan and schumacher (2006:401) argue that purposive sampling is used to increase the utility of information obtained from a small sample, which is the case with this research study. from a population of 60 teachers, 14 were selected: seven participants at school a and seven at school b. the teachers interviewed comprised teachers who were new in the field (with less than 1 year’s teaching experience) as well as those who had been teaching a minimum of at least 5 years. the selection of novice teachers alongside experienced individuals was purposely done because they represent different eras in teacher training. recent graduates were selected to represent teachers who were likely to have received inclusive education training at college or university. this is in light of the fact that a 3-year inclusive education degree was introduced at southern africa nazarene university 3 years ago (year) while more experienced teachers represented teachers who were likely to have never received pre-service inclusive education training but ought to have gotten in-service training. instruments and procedures data used in this study was collected at the schools’ premises. letters describing the study were sent to the teachers, who gave their written consent to the researcher. semi-structured interviews were initiated by the interviewer, with a view to gathering certain information from the person interviewed. these were conducted face to face with individual teachers. face to face interviews enabled the researcher to gather information about the situation regarding barriers in the implementation of inclusive education at the gege branch of high schools. approximately 30-minute long interviews were conducted after working hours and during teachers’ free teaching periods until all the respondents selected were interviewed. interviews were voluntary, and respondents who participated gave the researcher their signed consent forms. the researcher used digital recording devices to record the interviews and then interviews were transcribed and coded by two independent researchers. interview questions were asked based on a literature review previously conducted to ascertain what other scholars have found in the same topic and the gaps thereof. the main research question the study sought to address was: what are the barriers to the implementation of inclusive education in high schools in gege branch, swaziland? the literature reviewed to inform the research questions included the following subtopics, inappropriate teaching and learning methods and support material, lack of support for teachers, unqualified and underqualified teachers, teacher training barriers to effective teaching and learning, inappropriate assessment procedures and curriculum delivery barriers to learning. semi-structured interviews and questionnaires (formatted on a five-point likert scale) were used for data collection. through the use of the semi-structured form of interviewing, the researchers were able to look at the way the responses were given, the tone used, facial expression, hesitation and gestures. to establish reliability, the instruments were pilot-tested with eight (four male and four female) teachers in a mainstream inclusive school in nhlangano area. to ensure instrument reliability, the researchers used cronbach’s alpha coefficients. the reliability of the instrument was obtained at a cronbach’s alpha coefficient of 0.85. this instrument was deemed reliable because the acceptable cronbach’s alpha coefficient reliability is 0.70 and above (de vos et al. 2005). importantly, findings from the pilot indicated that the items on the questionnaire instrument were clearly worded as there were few clarity-seeking questions and the instruments were seen as giving a satisfactory validity. the policy documents reviewed were the swaziland education sector policy, 2011, and the teachers’ qualification registration form. the documents reviewed for this study gave information that complemented information gathered through interviews. for instance, teachers’ qualification registration forms provided evidence regarding how many of the interviewed participants had been trained and had not been trained in inclusive education. data analysis the main question was interrogated through interviews with the participants. responses to the questions asked regarding barriers in the implementation of inclusive education were tabulated in table 3. the responses as given by the participants culminated in the formation of three categories, which ultimately resulted in the themes or findings of the study, which are presented in table 3. a teacher qualification register was analysed in the participating schools to investigate the level of teacher training and its impact on the implementation of inclusive education. tables 1 and 2 are teacher profile tables describing teachers’ work experience and age. table 1: profile of teachers. table 2: summary of teacher profiles. ethical considerations the researcher was fully aware of the ethical and legal obligations he had to the study and the participants as well. the obligations included full disclosure of the study to participants, voluntary participation of respondents, informed consent and avoiding exposing participants to risks. researchers also have an obligation to protect the privacy of participants, hence the need to pay attention to practices such as anonymity, confidentiality and appropriate storage of data (mcmillan & schumacher 2010:121). the authors adhered to research ethics and the university of south africa provided clearance. all stakeholders including participants consented by signing consent forms. results of the research participants were male (10) and female teachers (4), all qualified high school teachers, employed by the ministry of education and training on a permanent basis in their schools. some teachers were diploma holders whilst others were degree holders, and their teaching experience varied from 4 to 20 years. participants have been represented by letters a to n under the teacher section of table 1. the names of the teachers are known but letters have been used to protect their identities and ensure confidentiality. the individual teacher profiles were grouped to show age, experience and qualifications. the aim was to summarily give the number of teachers with relevant qualifications in inclusive education. the summary of teacher profiles is presented in table 2. all interviews with participants were conducted by the researcher during times that were suitable and comfortable to the participant teachers. other participants were interviewed on weekends and after school hours when they had free time to answer the research interview questions. data coding according to lee (2007:3), for the first step of the data analysis, the researcher has to read and reread, writing down the emerging categories in a form of a paraphrase, phrase, heading or label that describes what the respondents are trying to say and what the researcher thinks of as important. this process is called ‘data coding’ (mertler 2006:3). coding requires the researcher to reduce the volume of information collected in order to identify and organise the data into important patterns and/or themes; hence the coding of the collected data became the first step to data analysis in this study. to reduce the impact of researcher bias, two independent researchers were engaged in the process of data coding and the themes that emerged from both were taken as the findings of the study. below are the findings presented in tubular format as coded by both independent researchers. the themes are further deliberated on in the discussion section of this research study. table 3 presents the responses to the question asked regarding barriers in the implementation of inclusive education that participants identified as realities in their respective schools. table 3: units, categories and themes that emerged during data analysis. coded data: researcher 1 analysis summary of themes that emerged from the study table 3 presents the findings of this study that highlight major factors that were found to be barriers to the implementation of inclusive education in schools by teachers. these include the following. non-inclusive curriculum: the curriculum is considered to be non-inclusive if it does not take into consideration activities teachers and learners must to do because of learning challenges and barriers that may be present in inclusive classrooms. this was found to be true of the curriculum of mainstream schools in swaziland and this fact has been further elaborated on in the ‘discussion of findings’ section. big numbers of learners: the policy of the ministry of education and training in swaziland is that one teacher should teach 40 learners per classroom. teachers complain that whilst this is practical for so-called normal school learners, it is much more challenging for the inclusive classroom where a teacher has to spend more time on one learner and draw up individualised education programmes for pupils with learning challenges. lack of resources: the units in table 3 highlight that teachers asserted there was a lack of resources and equipment (assistive devices) for disabled learners in the schools where they worked. there was also a lack of teachers and yet in inclusive schools they are an essential resource. teachers’ lack of competence as barriers to the implementation of inclusive education: the teachers’ responses in table 3 further divulge that teacher training in inclusive education and training in identifying learners with challenges was inadequate among the teachers and not properly structured. one document reviewed was a teacher profile document that contained teacher information and their qualifications from both participating schools. this document showed that in schools with 61 staff members there was one teacher holding a certificate or any qualification in inclusive education, with one teacher still studying towards attaining her inclusive education bachelor’s degree. lack of clear government implementation matrix policy: the other policy document reviewed was the swaziland education sector policy of 2011. section 6.3 of this policy calls for the mainstreaming of inclusive education. however, the section is not clear on how this shall be implemented, funded and supported. moreover, the participating schools were found to be without their own policies adopted from this policy on how inclusive education was to be mainstreamed. the inclusive education: responses, challenges and prospects for the kingdom of swaziland report notes that in some quarters inclusive education is still narrowly defined and associated with disability only and there is inadequate monitoring and evaluation of inclusive education at national level. this finding by the report is consistent with responses from some teachers who admitted to having a negative attitude towards learners with disabilities and those having learning difficulties. whilst monitoring at national level is overseen by one inspector in the ministry of education and training, the country remains without a regional inspectorate for inclusive education. coded data: researcher 2 analysis the second researcher transcribed the audio interviews with participants of the study and the findings that emerged were listed and titled ‘themes’. themes: barriers to the implementation of inclusive education high numbers of learners. curriculum is not inclusive. identification of learners with learning challenges. teachers lack competence to support learners with challenges. teachers not adequately trained in dealing with learners with learning challenges. school buildings lack assistive equipment. non-inclusive curriculum. inadequate attention to learners with challenges because of other teaching activities. discussion of findings the data gathered during this research study was coded by two independent researchers and the primary researcher analysed both sets of themes. the researcher observed that, to a large extent, the themes, which are the findings of the study, are largely similar, although they were coded separately. the participants’ responses to questions aimed to help the researcher ascertain what the barriers are to the implementation of inclusive education in schools in gege branch, swaziland. the themes presented are further discussed in detail in the following. non-inclusive curriculum, big numbers of learners, lack of resources and teachers’ lack of competence are barriers to the implementation of inclusive education a respondent had this to say: ‘teaching in a class with big numbers and having learners who experience learning challenges does slow down the teaching and learning process. at the end of the day syllabuss may not be completed at schools.’ (respondent a, female, 32 years old) teachers viewed inclusive education efforts as being stifled by the large number of learners they were currently teaching in their classrooms. teachers’ argument in this regard was that it becomes very difficult to cater to every child’s individual needs in a big classroom setup and still be able to meet other demands such as test schedules, piles of marking and constant evaluation. it was also argued by teachers that considering extracurricular activities in schools, inadequate attention is offered to learners with challenges. most teachers complained that a majority of their classes had more than 40 students per classroom, which is more than the official student–teacher ratio stipulated by the ministry of education and training. to this end it can be argued that indeed classrooms were overcrowded as some teachers asserted. other teachers observed that the large numbers of students per class can perhaps be attributed to inflexibility of the curriculum. a respondent reiterated that: ‘the curriculum used itself, is not inclusive as it doesn’t take into consideration activities teachers and learners ought to do due to learning challenges and barriers that may be present in inclusive classrooms.’ (respondent c, male, 25 years old) it was felt not appropriate that the ministry of education and training was mainstreaming inclusive education but still using a curriculum that was not designed to be inclusive. this argument by teachers seems valid because a curriculum needs to take into consideration teaching methods, lesson planning and lesson structures, as well as assessment methods. because the current curriculum does not recognise the diversity of learners and their needs in the classroom, then indeed it does hinder efforts towards inclusion. another respondent noted the lack of facilities in the school as a challenge in implementing inclusive education in his school. a respondent observed: ‘[t]he school lacks facilities to cater for learners with disabilities whilst changes in school buildings have not been done to accommodate learners with physical disabilities such as learners in wheelchairs.’ (respondent b, male, 36 years old) however, respondent h (female, 31 years old) submitted that lack of training in inclusive education makes it hard for a teacher to be in a position to support a learner with learning challenges even if the teacher can identify a learner’s problem area. she further noted that a learner can be identified to be having a learning challenge but if parents do not have the resources it becomes difficult to effectively help a child. for instance if a child has an eye problem requiring reading glasses and the parents cannot afford them, it becomes problematic. the child does not learn for long periods and thus misses out on a lot of subject matter. other teachers felt that parents did not support them enough as well, because sometimes a teacher may be able to identify a learner to be having eyesight problems, for instance, which can be addressed by taking a child to an eye specialist who will recommend appropriate intervention. in such cases teachers complained that parents were usually unable to pay for the child’s medical bills, which may mean the child would not be helped for a prolonged period, thus resulting in the child’s eye problems becoming severe; hence the same effect would occur on his or her learning. poverty-stricken communities are also poorly resourced communities, which are frequently characterised by limited educational facilities, large classes with high pupil–teacher ratios, inadequately trained staff and inadequate teaching and learning materials. such factors raise the likelihood of learning breakdown and the inability of the system to sustain effective teaching and learning. learners from families where one or more of the breadwinners are unemployed or poorly paid are also more likely to leave school as soon as possible to go out to work to supplement the family income. this perpetuates the cycle of limited skills with fewer work opportunities, increased likelihood of unemployment or poorly paid work and, thus, ongoing poverty and exclusion (department of education 2008). respondent d (male, 25 years old) commented that he was unable to identify learners facing learning challenges in his classroom. according to gwala (2006:3), often teachers who are unable to identify learning difficulties in learners have the tendency to believe that learners are being difficult or deliberately disturbing learning; hence in some cases teachers ended up punishing learners who in fact needed help. according to fakudze (2012:71), in such cases learners end up dropping out of school because of punishment and lack of support from their teachers. one of the respondents commented that in the schools there was a problem of resources. she said: ‘for instance, there is no way we can teach learners with sight problems because we do not have braille machines so such teaching materials or resources we still do not have. secondly, the school buildings are still not adjusted to accommodate learners with disabilities who may require assistive equipment and specially designed buildings to help them move around the school.’ (respondent i, male, 27 years old) lack of support for learners with challenges south africa, in an effort to support the implementation of inclusive education at foundation phase, introduced specialist teachers called learning support teachers (lsts). many teachers in that country did not have the benefit of being trained to teach learners who experience barriers to learning; hence most find it difficult. according to mahlo (2011:5) these expectations have been employed in the foundation phase to fill that gap and assist classroom teachers. the teachers in our study argued that whilst swaziland does not have such a crucial structure as the lsts, the in-service training department in the ministry of education and training is believed to be the equivalent. the in-service department is known for its role in training teachers who are already in the field, particularly to boost their capacity when new programmes are introduced. in view of this, teachers felt that the in-service department’s inactivity where inclusive education was concerned was the reason for the lack of support for learners with learning challenges. lack of resources and appropriate infrastructure for disabled learners most schools in swaziland are not accessible to disabled learners such as the blind and deaf. observation by teachers interviewed for this study was that the infrastructure of schools in the gege branch is not accessible for learners with disabilities, especially those in wheelchairs. against this background, the government of swaziland has a project to modify the infrastructure of schools to increase physical access for children with special needs. however, teachers in the gege high schools indicated that infrastructural development remains a concern. some schools were constructed on sloping ground. this is a huge challenge for blind pupils and pupils in wheelchairs. teachers also noted that the government only delivered mobile classes in primary schools and these classes have no provisions for blind pupils or pupils in wheelchairs. teachers felt that the school infrastructure must be upgraded to accommodate pupils who are blind and are using wheelchairs. it was also observed by teachers that whilst government policies advocate that every learner should attend schools that are in their neighbourhood, some disabled learners may not be able to access education there. it was argued that the high schools in gege did not have resources such as braille equipment and the teachers were not competent in reading and writing braille; neither were they literate in sign language. teacher training in inclusive education is inadequate and identifying learners with learning challenges is inadequate and not properly structured teachers were asked how they were trained in inclusive education. from their responses it was clear that not all teachers were trained at tertiary level or at in-service level. there is evidence that even those who were trained were perhaps not adequately trained. the following are some of their comments: ‘i can say i haven’t received any training in inclusive education.’ (respondent a, female, 32 years old) ‘i wasn’t trained at college in inclusive education. what happened was that we were introduced to inclusive education, simply the definition, just what it is about. we never learnt content in details.’ (respondent b, male, 36 years old) ‘well, i cannot say i was trained but as part of my training at college there was a topic we did on inclusive education. it was under another subject and lasted one or two months.’ (respondent j, male, 24 years old) ‘not at all. as part of my training at the university of swaziland we touched on some millennium development goals, which touched on the need for inclusivity in all schools in the country, but we never touched on topics on inclusive education.’ (respondent k, female, 35 years old) this notion is shared by bagree and lewis (2013:2), who claim that teachers are often simply not trained or supported to teach children with ld, which makes these children among the most marginalised in terms of educational opportunity and attainment. this is affirmed by responses from most teachers interviewed in this study. these responses by the teachers clearly show that teachers do not feel prepared enough to work with learners who have diverse learning needs. hence, even those who did receive some degree of training complained that their training was not enough to prepare them to work in inclusive classrooms. for instance: ‘barely. i only got to know about inclusive education as just an overview during one of my guidance and counselling classes at the university of swaziland.’ (respondent g, female, 40 years old) this shows that there is a serious need to train teachers in the sampled schools on inclusive education methods. this is evidence that a large population of teachers in schools today have not been trained in inclusive education matters. teachers were further asked how they were trained to identify learners experiencing learning challenges in their classrooms. various responses were given in response to this question but there were mixed feelings as a good number of teachers responded that they were not trained in light of them not having been trained in inclusive education at tertiary level. other teachers alluded to the fact that identifying learners experiencing learning challenges is a skill that generally all teachers obtain during teacher training at teacher training institutions, regardless of whether the course a teacher is doing is inclusive education related or not. ‘i wasn’t trained but as a teacher you must be very observant, maintain eye contact so that you can be able to spot a learner with challenges. being observant puts you in a position to identify and help learners experiencing learning challenges.’ (respondent c, male, 25 years old) ‘i didn’t receive any training in inclusive education. under educational psychology we did touch on inclusive issues but i still feel that was not enough training in the subject.’ (respondent e, male, 54 years old) ‘of course i was trained in identifying learners experiencing learning difficulties by observing how a learner writes, how they look at what is written on the board. basically you have to figure it out yourself when looking at the learner’s behaviour that a learner might be experiencing challenges, then you can approach that learner and intervene in a way that addresses the challenge a learner has.’ (respondent h, female, 31 years old) through responses from educators on this question, it is evident that indeed many teachers maintained that they were not trained in identifying learners with challenges. teachers argued that they were not trained in inclusive education. hence, they were not taught how to identify learners experiencing barriers to learning. however, closely looking at teacher’s responses, the researcher can argue that it is imperative that even those teachers who claim to have no background in inclusive education would have received training in the identification of learners experiencing learning challenges. according to du toit (1997), observation is the basic skill that teachers should master in order to identify learners with barriers to learning successfully. having interacted with a lot of literature on identifying learners with learning challenges, the researcher acknowledges that indeed there are many methods, some of which are psychological and scientific, that can be used to identify learners experiencing learning problems. lack of clear government implementation matrix policy among the documents reviewed was a teacher profile document, which contained teacher information and their qualifications. this document showed that in schools with 61 staff members there was one teacher that had a certificate or any qualification in inclusive education. one other teacher was still studying towards obtaining her bachelor’s degree in inclusive education. this highlighted the fact that teacher training is a very important factor towards achieving the desired competencies for the implementation of inclusive education to mainstream schools in swaziland. the researcher also observed that negative attitudes by teachers towards teaching in inclusive classrooms are a barrier emanating from the fact that a majority of the teachers interviewed received inadequate training in inclusive education. the other policy documents reviewed were the swaziland education sector policy of 2011 and the inclusive education: responses, challenges and prospects for the kingdom of swaziland report of 2011. the swaziland education sector policy (2011:13) states it as one of its policy goals that all attitudinal and physical barriers to inclusive education shall be removed in public, private and other schools and institutions. this research study has revealed through teachers’ responses that the barriers that the ministry of education and training seeks to eliminate exist in schools today in many forms. it also transpired during the review of these documents that whilst the ministry of education and training has policies in place to enforce implementation of inclusive education, schools do not have their own policies regarding the same adapted from the main government policies. conclusion the aim of this research study was to identify barriers that have affected the implementation of inclusive education in mainstream schools in swaziland, a case study on the gege branch of schools. the prerogative of inclusive education is to serve the needs of all learners and to ensure that they reach their optimum potential, whilst seeking to include parents and communities in this process. achievement of this aim not only fulfils the constitutional education obligation the country has to its citizenry, but it also increases the literacy rate and much-needed skills and labour need for growth and sustainability. while swaziland has promulgated sound policies to allow for effective mainstreaming of inclusive education, barriers such as a non-inclusive curriculum, high numbers of learners, lack of resources and teachers’ lack of competence have emerged as challenges. to this end it is advisable for the national curriculum centre of swaziland to redesign the country’s curriculum to accommodate learning needs for children with different abilities and diverse learning needs. also, establishment of district-based support teams to liaise with schools in teacher training and inclusive education support matters in schools could help eliminate barriers facing implementation of inclusive education at gege branch schools in swaziland. also, there is a need for schools to create their own implementation matrixes with regard to facilitating implementation of inclusive education policies in order to breach the disconnect that currently exists between national policy and actual practice of it. acknowledgements we thank the director of education in the ministry of education and training in swaziland for allowing us to conduct our research in their schools. we are very grateful to all the teachers who allowed us to interview them. much appreciation goes to fellow researcher dr qandelihle simelane for his input in language editing and scholarly advice. the study would not have been a success without the co-author dr m.m. malale from the university of south africa. the publication fees for the article were sponsored by the university of south africa (unisa), institutional funding department and department of abet and youth development research output incentive fund. competing interests the authors declare that they have financial or personal relationships that may have inappropriately influenced them in writing this article. they have no relationship of any sort with anyone in the african journal of disability including peer reviewers. authors’ contributions the primary author and researcher was s.l.z. who was responsible for all the research and writing. the role of m.m.m was advisory and largely supervisory. his contributions were mainly conceptual. references bagree, s. & lewis, i., 2013, teachers for all: inclusive teaching for children with disabilities, international disability and development consortium, washington, dc. batsche, g., 2006, colorado state special education director meetings: cde materials from rti implementation team (2006–2007), national association of state directors of special education, inc, alexandria, va. beattie, j.r. anderson, r.j. & antonak, r.f., 1997, ‘modifying attitudes of prospective educators toward students with disabilities and their integration into regular classrooms’, the journal of psychology 131(3), 245–259. https://doi.org/10.1080/00223989709603512 calitz, m., 2000, ‘guidelines for the training content of teacher support teams’, med dissertation, university of stellenbosch, stellenbosch. creswell, j.w., 2005, educational research: planning, conducting and evaluating, sage, london. department of education, 1998, draft assessment policy of the general education and training phase. grades r-9 and abet, government gazette, no. 19640, government printer, pretoria. department of education, 2008, quality education for all: overcoming barriers to learning 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(ed.), 1998, qualitative approaches to evaluation in education, praeger, new york, pp. 89–115. grossman, s., 2004, classroom behaviour management for diverse and inclusive schools, viewed 09 august 2013, from www.recooperar.org gwala, q.v., 2006, ‘challenges facing the implementation of inclusive education in primary schools’, unpublished med dissertation, university of zululand education, durban. hull, j.r., 2005, ‘general classroom and special education teachers’ attitudes toward and perceptions of inclusion in relation to student outcomes’, doctoral dissertation, viewed 04 may 2013, from http://www.etd.fcla.edu/wf/wfe0000046/hull_jen individuals with disabilities education act, 2004, alignment with the no child left behind act, viewed 14 september 2014, from http://idea.ed.gov/explore/ kuester, v.m., 2000, ‘10 years on: have teacher attitudes toward the inclusion of students with disabilities changed?’, paper presented at the isec 2000, london. kuester, v. m. 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(eds.), 2005, addressing barriers to learning: a south african perspective, van schaik publishers, pretoria. le fanu, g., 2005, the inclusion of inclusive education in teacher-training: issues of curriculum, pedagogy and staffing, university of goroka, bristol. lee, m., 2007, review on the data coding: method of analysing my qualitative data, viewed 12 september 2015, from www.csun.edu/../panel3.miha.doc loreman, t. & harvey, d., 2005, inclusive education. a practical guide to supporting diversity in the classroom, routledge, abingdon. mahlo, f.d., 2011, experiences of learning support teachers in the foundation phase, with reference to the implementation of inclusive education in gauteng, university of south africa, pretoria. mcmillan, j.h. & schumacher, s., 2006, research in education: evidence based enquiry, 6th edn., allyn and bacon, boston, ma. mcmillan, j.h & schumacher, s., 2010, research in education: evidence-based enquiry, 7th edn., pearson education, new jersey. mertler, c.a., 2006, action research: teachers as researchers in the classroom, sage publications, london. ministry of education and training, 2011, swaziland education and training sector policy (edsec), government of swaziland, mbabane. motitswe, j., 2012, teaching and learning methods in inclusive classrooms in the foundation phase, viewed 10 may 2015, from http://hdl.handle.net/10500/6037 mukhopadhyay, s., molosiwa, m. & moswela, e., 2013, ‘teacher trainees’ level of preparedness for inclusive education in botswana schools: need for change’, international journal of scientific research 2(2), 51–58. issn: 1117-3259. najjingo, h., 2009, challenges of accessing all-inclusive education services by children with disabilities (cwds): a case of mijwala sub-county ssembabule district, makerere university, sembabule. owen, i.r., 1995, social constructionism and the theory, practice and research of psychotherapy: a phenomenological psychology manifesto, viewed 10 october 2015, from www.internationalitymodel.info pijl, s.j. & meier, c.j., 1997, factors in inclusion: a framework, routledge, london, pp. 1–16. powers, s., 2002, ‘from concepts to practice in deaf education’, journal of deaf studies and deaf education 7(3), 230–243. https://doi.org/10.1093/deafed/7.3.230 rutter, m. & yule w., 1975, ‘the concept of specific reading retardation’, journal of child psychology and psychiatry and allied disciplines 16(3), 181–197. https://doi.org/10.1111/j.1469-7610.1975.tb01269.x savolainen, h., 2009, ‘responding to diversity and striving for excellence: the case for finland’, in c. acedo (ed.), prospects quarterly review of comparative education, vol. 39, pp. 281–292, unesco ibe, joensuu, finland. schlaggar, b.l. & mccandliss, b.d., 2007, ‘development of neural systems for reading’, annual review of neuroscience 9, 642–654. stuebing, k.k., fletcher, j.m., ledoux, j.m., lyon, g.r., shaywitz, s.e. & shaywitz, b.a., 2002, ‘validity of iq-discrepancy classifications of reading disabilities: a meta-analysis’, american educational research journal 39(2), 469–518. https://doi.org/10.3102/00028312039002469 swaziland government, 2005, constitution of swaziland, websters print, mbabane. torgesen, j.k., 2002, ‘empirical and theoretical support for direct diagnosis of learning disabilities by assessment of intrinsic processing weaknesses’, in r. bradley, l. danielson & d. hallahan (eds.), identification of learning disabilities: research to practice, pp. 565–650, erlbaum, mahwah, nj. trochim, m.k., 2006, sampling, viewed 10 september 2013, from http://www.socialresearchmethods.net/kb/sa unesco, 1994, ‘the salamanca statement and framework for action on special needs education’, adopted by the world conference on special needs education: access and quality, salamanca, spain, unesco, paris, june 7–10, 1994. van reusen, a.k. & barker, k.s., 2001, ‘high school teacher attitudes toward inclusion’, the high school journal 84(2), 7–17. watkins, a., 2007, assessment in inclusive settings: key issues for policy and practice, european agency for development in special needs education, odense. webster, t., 2004, ‘accelerating girls’ education in png: reasons why students drop out?’, post-courier, 30 july. zimba, z., 2011, managing an inclusive school in swaziland, research report, rhodes university, grahamstown. book review rethinking disability: the need to rethink representation book title: rethinking disability: world perspectives in culture and society author: devlieger, p., miranda-galarza, b., brown, s.e. & strickfaden, m. (eds.) isbn: 13:978-9044134179; 10:9044134175 publisher: amazon, 2016, $51.75* *book price at time of review review title: rethinking disability: the need to rethink representation reviewer: jenna-lee procter1 affiliation: 1department of psychology, stellenbosch university, south africa corresponding author: jenna-lee procter, jennalee.za@gmail.com how to cite this article: procter, j-l., 2018, ‘rethinking disability: the need to rethink representation’, african journal of disability 7(0), a498. https://doi.org/10.4102/ajod.v7i0.498 copyright notice: © 2018. the authors. licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. as a clinical psychologist working in the fields of intellectual disability (id) and transgender mental health in south africa, i found rethinking disability: world perspectives in culture and society informative and refreshing. it has expanded on the social model by incorporating anthropological and sociological theories to offer a critical perspective of ableism, disability culture and the contextualisation of disability from a unifying disciplinary perspective. there are two other book reviews which are easily accessible online (see sharpe 2017 and regler 2017), that provide excellent summaries and comments on rethinking disability. rather than echoing many of their arguments in my review, i would like to offer an african take, as rethinking disability was submitted to the african journal of disabilities (ajod) for review. i was excited to review rethinking disability after thumbing through the introductory chapters and reading the back cover. i was intrigued by the concept of ‘disability mundus’, or: world perspectives on disability that are contemporary in nature, in which we explore the contextualisation of disability in history, through the material and immaterial, its expressions in culture and society, its local and global nature, its educational context, and its trans – and post human contexts. (devlieger et al. 2016:13) this suggested that i would encounter various perspectives from people the world over who draw on critical theory and espouse principles of inclusivity, representation and intersectionality. i was disappointed to discover, despite emphasising on disability mundus, that the volume’s dominant voice came from the white, global north. only a few of the contributors were mixed race and none, as far as i could tell, were from africa, central or east asia, india or eastern europe. i found this lack of representation problematic in a text that espouses ‘world perspectives’ and uses a title which implies that ‘world’ is synonymous with north america and western europe. the exclusion of african researchers from the global academy is indicative of the failure to decolonise, losing out on useful transnational and transferable identity capital. the majority of people with disabilities in fact live in the global south, and we have many competent, ardent and inspiring disability scholars and academics who could have contributed to rethinking disability. by focusing on disability values in the united states, the introductory essay by gary l. albrecht set the tone for an essentially western dominated anthology. opening with an essay on ‘disability values, representation and realities’ in the african context, rather than with a euro-american centric paper, would have sent a more meaningful message. the local cannot meet the global when the majority world is predominantly studied and written about by people who do not hold citizenship here. titling this anthology ‘world perspectives’, when it is written by people not actually from the places they write about, and who encapsulate experiences they have not lived, is problematic. exceptions are maha damaj’s article on institutionalised children with visual impairment in lebanon and the inclusion of mimi lusli in the essay on people affected by leprosy in indonesia. both articles on africa were written by white westerners. the essays are academically valuable texts … but politically? much less so. the oppression of black voices is perpetuated when their realities and contexts are spoken about, explained and changed, and when black histories are still written up by the white man (ndaba et al. 2017). of course, that does not mean that white people cannot write about other cultures, the problem arises when other cultures are mostly being written about by white people. the essays in rethinking disability also adopted an academic tone, making it inaccessible to many readers whose first-, secondor even third-language is not english. most of the authors in rethinking disability have, in one way or another, called on the academy to rethink how disability is performed and represented. this is evident in terminology used: ‘misfitting’, ‘ghettoization’, ‘diseducation’, ‘double outcast’ and ‘conscientisation’. but the argument for inclusion of people with disabilities into academia must be crucially extended to race, gender, sexuality, class and nation. the book had an opportunity to exemplify intersectional disability studies. the inclusion of queer identities, for example, would have been potentially meaningful. many queer folx have disabilities; there is a higher rate of disability among gay, lesbian and bisexual adults when compared with heterosexual ones (fredriksen-goldsen & barkhan 2012). the 2015 u.s. transgender survey revealed that 54% of trans people with disabilities said that they had attempted suicide (james et al. 2016). we cannot afford to exclude lesbian, gay, bisexual, transgender, intersex and queer (lgbtiq) identities from disability studies. yet, rethinking disability’s transmodernism does not apply to one of the most marginalised groups within disability. many parallels exist in the queer and disability rights movements as evinced in some of the part 4 essays. tanya titchkosky’s discussion of the interrelation of bodies, environment and knowledge in a university setting highlights the exclusionary processes which transgender and gender-diverse people must navigate. the question of ‘to pee or not to pee?’, so aptly put, mirrors the lack of gender-neutral restrooms in academic institutions which apply methods of justification for excluding trans people similar to those applied to people with disabilities. josephine hoegaerts looks at the projects of normality and educational assimilation of children with hearing and speech impairments. just as trans people are expected to conform to the gender binary, she spoke of the oralist approach through which children – to be ‘passable’ – were required to hide their deafness by becoming masterful lip-readers and skilful speakers. the hegemony inherent in academia has excluded disabled, queer and black academics who could have contributed, literally, to rethinking disabilities. in south africa, the #rhodesmustfall and #feesmustfall movements are powerful acts of defiance by young, mostly black students in the struggle for university access. these movements challenge the status quo of white supremacy, privilege and colonisation (ndaba et al. 2017), while thoughtful applications of intersectionality to disability studies affords us opportunities to be more self-reflexive and honest about our positions and privilege. in africa, the need to bring race and queer issues to the fore in the contextualisation of disability remains. unfortunately, rethinking disabilities has missed the opportunity to give prominence to this major gap in disability studies. the essays written by those with disabilities themselves were really appreciated. ‘nothing about us, without us’, a term made popular by james charlton and originally coined by two south africans, michael masutha and william rowland, was championed in rethinking disability as approximately a quarter of the contributors are disabled. their participation in academia can be understood as a political act, just as jori de coster spoke on how disabled people, in a theatre-setting in kinshasa, dr congo, are supplanting oppressive representation with ones that hold true to their own realities. the two articles on id by michel desjardins and philip and dianne ferguson are invaluable contributions to the field of id – an often overlooked area in disability studies. both unfortunately focused on the perspectives of parents rather than those of pwid themselves. this raises issues around infantilisation (perpetuating the notion that pwid are dependent, eternal children) (capri & swartz 2018) and exclusion. excluding pwid from participating in knowledge creation as co-researchers or even primary investigators has arguably been considered unethical and discriminatory (capri & coetzee 2012). judged separately and on its own merits, each article offers insightful, contextualised and critical accounts of disability studies. there is something for everyone in this collection of essays as the topics discussed span a wide array of interests and issues. in many ways, it serves as a reference book for scholars and academics. i wish that more consideration was given to decolonising academia and including more voices from the global south in a book on ‘world perspectives’. rethinking disability has achieved its goal of bringing ‘ableism inside to a place where the prosthesis is no longer the elephant in the room’; however, it has not managed to bring white, cishet privilege to a place where #blacklivesmatter and every other marginalised or underrepresented identity is no longer the elephant in the room. references capri, c. & coetzee, o., 2012, ‘on the unethicality of disablism: excluding intellectually impaired individuals from participating in research can be unethical’, african journal of disability 1(1), art. #23. https://doi.org/10.4102/ajod.v1i1.23 capri, c. & swartz, l., 2018, ‘“we are actually, after all, just children”: caring societies and south african infantilisation of adults with intellectual disability’, disability & society 33(2), 285–308. https://doi.org/10.1080/09687599.2017.1409102 devlieger, p., miranda-galarza, b., brown, s.e. & strickfaden, m., 2016, rethinking disability, world perspectives on culture and society, 2nd edn., garant publishers, antwerp. fredriksen-goldsen, k.i., kim, h-j. & barkan, s.e., 2012, ‘disability among lesbian, gay and bisexual adults: disparities in prevalence and risk’, american journal of public health 102(1), 12–21. https://doi.org/10.2105/ajph.2011.300379 james, s.e., herman, j.l., rankin, s., keisling, m., mottet, l., anafi, m. et al., 2016, the report of the 2015 u.s. transgender survey, viewed 30 january 2018, from https://www.transequality.org/sites/default/files/docs/usts/executive%20summary%20-%20final%201.6.17.pdf ndaba, b., owen, t., panyane, m., serumula, r. & smith, j., 2017, the black consciousness reader, jacana media, cape town. regler, r., 2017, ‘rethinking disability: world perspectives in culture and society’, disability & society 33(3), 492–493. http://doi.org/10.1080/09687599.2017.1414289 sharpe, c., 2017, review of p. devlieger, b. miranda-galarza, s.e. brown & m. strickfaden, (eds.), rethinking disability: world perspectives in culture and society, 2nd edn., hi-disability, h-net reviews, viewed 30 january 2018, from http://www.h-net.org/reviews/showrev.php?id=49986 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) babalwa p. tyabashe-phume division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa department of social work, faculty of humanities, university of johannesburg, johannesburg, south africa eunice tunggal canada excellence research chair in health equity and community wellbeing, faculty of community services, toronto metropolitan university, toronto, canada shaffa hameed missing billion initiative, washington, united states xanthe hunt africa health research institute, durban, south africa karen soldatić canada excellence research chair in health equity and community wellbeing, faculty of community services, toronto metropolitan university, toronto, canada lieketseng ned division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation tyabashe-phume, b.p., tunggal, e., hameed, s., hunt, x., soldatić, k. & ned, l., 2025, ‘scoping review on technology-facilitated gender-based violence against women with disabilities and lgbtqi+ persons in lowand middle-income countries’, african journal of disability 14(0), a1810. https://doi.org/10.4102/ajod.v14i0.1810 note: additional supporting information may be found in the online version of this article as online appendix 1 and online appendix 2. original research scoping review on technology-facilitated gender-based violence against women with disabilities and lgbtqi+ persons in lowand middle-income countries babalwa p. tyabashe-phume, eunice tunggal, shaffa hameed, xanthe hunt, karen soldatić, lieketseng ned received: 25 july 2025; accepted: 27 oct. 2025; published: 09 dec. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: technology-facilitated gender-based violence (tfgbv) refers to acts of harm enabled or intensified through digital platforms, negatively affecting women’s rights, safety and well-being. women with disabilities are at heightened risk because of the intersection of ableism and gender inequality. however, limited evidence exists on how tfgbv manifests and impacts this population, particularly in lowand middle-income countries (lmics). objectives: this scoping review aimed to map existing research on tfgbv against women with disabilities in lmics, identify common patterns and explore intersections with broader structural vulnerabilities. method: using the prisma-scr framework, we searched seven academic databases and grey literature published between 2010 and 2024. eligible studies focused on women in lmics and involved tfgbv through consumer digital technologies. data were charted and deductively analysed using adapted frameworks from prior tfgbv literature. results: from 4738 records screened, 43 studies met the inclusion criteria. most explored how digital tools enabled violence with offline consequences. none focused exclusively on women with disabilities, though some included them. technology-facilitated gender-based violence impacts were wide-ranging, with lgbtq+ individuals, rural populations and low-income groups facing intersecting risks. conclusion: this review highlights a gap in research on tfgbv among women with disabilities in lmics. future studies must centre intersectional, inclusive and survivor-informed approaches. contribution: this review adopted an intersectional approach, recognising how disability, gender, poverty and other marginalised identities compound tfgbv risks. it highlights the lack of focused research on tfgbv against women with disabilities in lmics and the need for inclusive, survivor-informed research and policy responses. keywords: gender-based violence; technology; women with disabilities; lowand middle-income countries; intersectionality. introduction digital inclusion presents a powerful avenue for people with disabilities to assert agency and amplify their often-silenced voices. however, it also carries the risk of reinforcing and perpetuating existing forms of ableist discrimination (un women & who 2023). technology-facilitated gender-based violence (tfgbv), as defined by un women and who (2023), is any behaviour facilitated, exacerbated or perpetrated through information and communication technologies (icts) or other digital means, which results in, or has the potential to result in, physical, sexual, psychological, social, political or economic harm or constitutes a violation of individual rights and freedoms. it includes a range of behaviours perpetrated through mobile devices, social media platforms, interactive computer games, text messaging, email or any other related technologies. common tactics used by perpetrators include cyber-bullying, cyber-grooming, hacking, doxing, image-based abuse, impersonation, threats and unwanted messaging and posting (hameed et al. 2025; hinson et al. 2019; unfpa 2022). manifestations of tfgbv may include combinations of tactics perpetrated online or continued offline (hinson et al. 2018; posetti et al. 2021). online violence against women is widespread and escalating globally, with particularly high rates in specific regions and among younger age groups. it was reported in 2021 that 85% of women have experienced some form of online violence (the economist intelligence unit 2021). earlier findings by the un broadband commission indicated that nearly 73% of women had encountered online violence, with young women aged 18–24 being especially at risk of severe online abuse (un women 2015). technology-facilitated gender-based violence, much like other manifestations of gender-based violence (gbv), stems from entrenched patriarchal norms and structural inequalities. these forms of violence are often compounded by intersecting systems of oppression, including racism, ableism, homophobia, transphobia and other forms of discrimination that marginalise certain groups (barter & koulu 2021; dunn 2020; henry, flynn & powell 2020; un women & who 2023). as a result, people who hold multiple marginalised identities such as women and girls, people with disabilities, lgbtq+ individuals, face heightened risks of experiencing digital and technology-mediated forms of violence (afrouz 2021; bansal et al. 2023; dunn 2020; henry et al. 2020; lenhart et al. 2016; plan international 2020; un women 2022; who 2020). people with disabilities face heightened risks of violence because of their increased vulnerability (astbury & walji 2014; coker, smith & fadden 2005; mikton & shakespeare 2014). this vulnerability is further compounded by gender, with substantial – though insufficiently addressed evidence indicating that women with disabilities are disproportionately affected by interpersonal violence, including sexual assault and intimate partner violence (coker et al. 2005; hollomotz 2009; waxman 1991). while emerging research indicates that individuals with intersecting marginalised identities are particularly susceptible to online forms of violence (afrouz 2021; bansal et al. 2023; dunn 2020; hameed et al. 2025; lenhart et al. 2016; un women 2022), the intersection of gender, disability and technology-facilitated violence remains underexplored. addressing this gap is critical, especially given the significant role technology plays in the lives of people with disabilities in accessing information, engaging in advocacy and fostering community (gelfgren, ineland & cocq 2022). in lowand middle-income countries (lmics), tfgbv presents unique and often under-recognised challenges, particularly for women and girls with disabilities (bansal et al. 2023). while digital access is increasing in lmics, so too are the risks of online abuse, especially in contexts where legal protections, digital literacy and gender equality are limited. structural inequalities such as poverty, lack of accessible education and weak enforcement of cybercrime and gbv laws exacerbate the vulnerability of women with disabilities to tech-enabled forms of violence (bansal et al. 2023; sheikh & rogers 2023). these challenges are intensified by social stigma, ableism and limited institutional support, which collectively silence survivors and hinder their access to justice and protection (sheikh & rogers 2023). as of the time the scoping was conducted, no published studies were identified that specifically addressed tfgbv against women with disabilities in lmics. this absence of prior research highlights the significance of the present study in addressing this critical evidence gap. this scoping review aimed to map and synthesise the available evidence on technology-facilitated violence against women with disabilities in lmics. we addressed the broad research question: what is the scope of the evidence on technology-facilitated violence against women with disabilities in lmics (i.e. what type of literature exists, what methodology was used, where is this work published, what are its key findings, including what are the core vulnerabilities for this group)? we answer this question in a two-part series of articles. in this article (part one), we address our first sub-question: (1) what are the manifestations of tfgbv and its intersections with gendered disability in the context of lmics? research methods and design this scoping review sits within a wider mixed-methods study exploring how technologies (such as smartphones, tablets and everyday consumer digital products) variously promote, increase and enable violence against women with disabilities in south africa and to identify strategies that they may use to protect themselves, remain safe and respond to violence (hameed et al. 2025). this scoping review adhered to the preferred reporting items for systematic reviews and meta-analysis extension for scoping reviews – prisma-scr guidelines (tricco et al. 2018). the prisma-scr checklist has been added as online appendix 1. the protocol for this scoping review was registered on the open science framework (https://doi.org/10.17605/osf.io/gz2ur) and published on bmj open journal (https://bmjopen.bmj.com/content/15/3/e093988.full?ijkey=sejiuunmduxqzrz&keytype=ref). search strategy a search for relevant papers was conducted with assistance from a subject librarian at the stellenbosch university faculty of medicine and health sciences library. seven databases (cinahl, scopus, web of science social sciences citation index, pubmed, psycinfo, cochrane and proquest) were selected because they are comprehensive sources of peer-reviewed research in the relevant fields of interest and types of publications. for grey literature, we conducted searches on google and specific websites of relevant organisations, such as un women, unfpa, unesco, plan international and sightsavers. in instances where a report cites relevant information sources, they were screened for eligibility and included. table 1 outlines the inclusion and exclusion criteria. table 1: eligibility criteria. this scoping review focused on women with disabilities across all age groups and gender identities, including cisgender and transgender women, without imposing age restrictions to ensure the inclusion of younger participants active in digital spaces. it considered all types of disabilities and included only studies specifically focused on women; studies with mixed-gender samples, key informant data only or without women-identifying participants were excluded. the review examined how widely used consumer technologies enable or exacerbate tfgbv against women with disabilities, excluding studies lacking a technological component. geographically, the review was limited to lmics, excluding data from high-income settings. it included diverse sources, such as primary studies, reviews, editorials and externally examined phd theses. only research-based grey literature published in english between 2010 and 2024 was considered. non-research grey literature, opinion pieces, blogs and media content were excluded. a literature search covering the period from 2010 to 2024 was conducted to capture developments over the past decade and a half, reflecting the rapid expansion of digital technologies and their growing relevance to experiences of tfgbv. screening and study selection following the completion of database and grey literature searches, all potentially relevant titles and abstracts were compiled into a research information systems (ris) database and imported into cadima (https://www.cadima.info/index.php), a free-to-use, web-based tool that facilitates scoping reviews, systematic reviews and evidence gap maps, for de-duplication. two reviewers (shaffa hameed, babalwa p. tyabashe-phume or eunice tunggal) independently screened titles, abstracts and full texts, with discrepancies flagged by cadima and resolved through discussion. the same reviewers later conducted full-text screenings and exclusion reasons were recorded and reflected in the prisma flow diagram. final inclusion decisions were supported by additional authors. a finalised list of studies was exported from cadima for data extraction. importantly, during the screening process, the review’s parameters were revisited to ensure alignment with the broader study goal. diversions from the protocol during the screening process, the review parameters were reassessed to maintain relevance, particularly in light of a notable evidence gap. the original research question focused on technology-facilitated violence against women with disabilities in lmics, but no studies meeting the inclusion criteria were identified. to address this gap, the population scope was expanded to include both women with and without disabilities, though ultimately no studies focusing exclusively on women with disabilities were found. additionally, the conceptual scope was broadened beyond the original focus on technology as a tool of violence to also capture how women, regardless of disability status, employ digital technologies to enhance safety, resist abuse and respond to acts of violence and exploitation. while this flexibility is not common for scoping review methods, we deemed it necessary because the purpose of the scoping review was to inform our next methods and so if insufficient evidence was located with the previous questions and scope, then to make the review usable for helping with advocacy and with continued research, it needed to be revised. this does not make the work less rigorous but simply more applicable. scoping reviews use an iterative, flexible approach to map broad literature and include diverse perspectives across disciplines. adaptive methods support discovery, enabling researchers to identify unexpected patterns and insights, especially valuable when a study may reveal more than originally anticipated (gottlieb et al. 2021; van assche et al. 2021). thus, we made the adaptations with the following in mind: focusing only on literature including women with disabilities would be limiting, especially with regard to the mixed-gender approach. lowand middle-income countries studies are still being explored and are still an important factor that impacts tfgbv. women without disabilities still have a gendered experience of tfgbv, which is further exacerbated by disability. iterative and flexible reviews are possible and necessary so that resources and funding are spent wisely and will produce results that can be disseminated and useful to the general population, not just the academic community. the purpose of the scoping review was to inform our next methods, and so if insufficient evidence was located with the previous questions and scope, then to make the review usable for helping with advocacy and with continued research, it needed to be revised. this does not make the work less rigorous but simply more applicable. data extraction and analysis using microsoft excel, the data extraction sheet and variables were drafted and refined by shaffa hameed in an iterative process, with input from other authors. the sheet was first piloted by extracting data from seven studies and then finalised for wider use. two reviewers independently extracted a subset to check for consistency and resolve any disagreements. the remaining records were divided between them. the final set of variables is listed in table 2, following a description of our analytical approach. table 2: list of variables used to chart and map the evidence. analytical approach the data extraction sheet and associated variables were initially developed in microsoft excel by shaffa hameed through an iterative process, incorporating feedback from the broader author team. to test and refine the tool, data were first extracted from a sample of seven studies before finalising the sheet for full implementation. to ensure consistency, two reviewers independently extracted data from a subset of studies and resolved any discrepancies collaboratively. the remaining studies were then divided between the reviewers for individual extraction. the final set of variables used is outlined in table 2, following a description of the analytical approach. as a framework for this deductive approach, we drew from two resources illustrated as figure 1 and figure 2. figure 1: measures of technology-facilitated gender-based violence. figure 2: conceptual framework of technology-facilitated gender-based violence. because of the lack of standardised definitions, categories and frameworks on tfgbv, we expanded upon existing frameworks and incorporated our own categories to align with the goals of our research (see table 2 for the final list of variables). ethical considerations ethical clearance to conduct this study was obtained from the health research ethics committee of stellenbosch university (no. n24/07/091). results the overall scoping review search strategy identified over 4700 non-duplicate records. however, most of these did not satisfy the eligibility criteria and were therefore excluded. of the 569 records reviewed at the full-text stage, 521 were deemed ineligible, and 43 records were included in the final list. of the 43 included records, 40 were individual studies, 2 were reviews and 1 was a review that included primary data. figure 3 illustrates this process. figure 3: prisma flow chart for this scoping review. description of included studies online appendix 2 depicts the characteristics of the included studies, and some data extracted from the individual studies. the included studies were classified based on the role of technology – whether it was used to facilitate, escalate or enable violence against women, or alternatively, to stay safe, offer protection from, or respond to such violence. the majority of the studies (n = 30) examined the ways in which technology was utilised to perpetrate or facilitate violence against women. these studies are analysed in greater detail in the second article (part two) of this scoping review. although the two categories – technology as a tool for enabling violence and technology as a means of protection or response were initially treated as mutually exclusive, two studies demonstrated that survivors of tfgbv subsequently appropriated the same technologies (e.g. public disclosures on x, formerly twitter) to foster solidarity and support among other survivors. nevertheless, there remains a relative paucity of evidence concerning the use of technology to enhance safety, provide protection or facilitate responses to violence against women. the rest of the studies (n = 13) addressed such interventions or instances where technology played a protective or responsive role. these 13 studies reported the use of technology as a resource or guide, such as chatbots, mobile apps with informational content or decision aids. several studies focused on technology-enabled reporting tools that linked survivors to formal support services, including helplines and trauma centres. others highlighted the role of technology in fostering social support through online disclosures and peer communities. three studies explored preventative uses of technology, including apps that identify safe areas or create protected virtual spaces for interaction. technology was most commonly used as a responsive tool before or after exposure to violence. this included safety planning tools, digital guides and connections to services. another frequent function involved facilitating access to formal support structures. some technologies also contributed to violence prevention, such as through crowd-sourced safety data or dedicated safe spaces. for example, a whatsapp group in china offered a secure environment for female ride-share drivers to share harassment experiences, while social media platforms enabled survivors to find solidarity. it is important to note that studies, which focused solely on digital activism, such as the hashtag movements like #metoo, were excluded, as they analysed online content without involving human participants. we also excluded studies linking device ownership or connectivity to gbv protection, as these did not demonstrate direct use of technology in protective or responsive roles. the intersection of violence, gender and disability in digital spaces studies highlight the unique vulnerabilities faced by adults with intellectual disabilities in digital spaces. a study conducted across chile, mexico and spain found that social media and messaging platforms like whatsapp were frequently used to perpetrate cyber-bullying, with survivors, most of whom were women, experiencing psychological distress and social isolation (jenaro et al. 2018). these forms of tfgbv were often perpetrated by peers or known individuals, pointing to how familiar environments remain sites of risk. similarly, in the study by huang and wang (2023) in china, individuals with physical disabilities who used online video platforms to seek social and emotional support were also subject to online verbal abuse and commercial exploitation. these digital spaces, while offering a means to reclaim agency and social connection, also exposed participants to forms of violence that mirrored the offline marginalisation they already faced, reflecting the continuity of gendered and ableist harm across contexts. in contrast, several studies highlighted the empowering potential of technology when used within disability-inclusive, safe and supportive frameworks. marnewick et al. (2022) documented an intervention programme in cape town that equipped intellectually disabled learners with skills to use whatsapp safely. participants with co-occurring conditions like autism and cerebral palsy developed digital literacy, confidence and coping strategies to prevent cyber risks, illustrating the importance of proactive, preventative education. similarly, the malawi-based study by lee and massah (2020) demonstrated how low-cost technologies, such as whatsapp and toll-free hotlines, were employed in disability-inclusive violence prevention programming. these tools enabled communication, awareness-raising and support-seeking among women and girls with disabilities who were subject to severe forms of violence, including forced sterilisation and mutilation. however, the study also identified ongoing gaps in systemic responses and disability data, reinforcing the need for targeted interventions grounded in intersectionality. digital platforms also serve as spaces of collective empowerment and solidarity for women with disabilities, particularly in social movements. lin and yang (2019) examined how disabled women in china engaged with the #metoo movement through platforms such as wechat, using online communities like ‘sisterhood’ to share their experiences, seek justice and challenge stigma. survivors, often harmed by known individuals in positions of power, found emotional relief and agency through storytelling and mutual support, despite limited institutional redress. this participatory digital activism reflects a broader trend, where women with disabilities are reclaiming digital spaces to resist violence and articulate their rights. yet, these efforts exist within fragile ecosystems of support and are frequently met with societal backlash, underscoring the urgent need for inclusive digital environments that both protect and amplify the voices of disabled women. the intersection of sexual orientation and violence several studies offered valuable insights into the unique experiences of lgbtq+ communities with regard to technology-facilitated violence. individuals within sexual and gender minority groups are significantly more likely to encounter stigma and violence than their cisgender and heterosexual peers, a trend that extends into digital spaces, where such incidents frequently go unreported (malta et al. 2023). the intersection of violence and sexual orientation shows how structural inequalities are reproduced and intensified in digital spaces, especially for lgbtq+ individuals and people with disabilities (malta et al. 2023). while digital platforms offer connection and identity exploration, they also enable harassment, exclusion and abuse. in bangladesh, nova, saha and guha (2023) found that lgbtq+ users of platforms like facebook and tinder faced threats, blackmail and online harassment, often motivated by extremist religious beliefs. many reported trauma, anxiety and fear, adopting coping strategies like blocking users, using aliases or avoiding platforms altogether. similarly, alichie (2023) reported that nigerian lgbtq+ users experienced online homophobia, reinforced by the same-sex marriage prohibition act, which legitimised discrimination and led to digital self-censorship. these findings reveal how digital spaces can be both sources of community and environments of danger for lgbtq+ people, especially in contexts where their rights are legally restricted or culturally condemned. in india, maji and abhiram (2023) conducted a mixed-methods study highlighting the emotional and psychological toll of cyber-bullying on lgbtq+ individuals. cyber-bullying included verbal and sexual harassment, often from anonymous or homophobic users. the consequences were profound, ranging from depression and anxiety to self-injury and suicidal ideation (maji & abhiram 2023). nonetheless, some participants reported finding strength and solidarity through online networks, engaging in digital coming out and support groups. the dual nature of digital environments – as sources of harm and healing was echoed in platero and lópez-sáez’s (2022) study of spanish lgbtq+ youth during the coronavirus disease 209 (covid-19) pandemic. while social media offered avenues for identity exploration and social connection, youth also encountered hostility and anti-lgbtq+ violence online (platero & lópez-sáez 2022). transgender and non-binary individuals, in particular, reported heightened vulnerability, underlining the urgent need for targeted online support services (platero & lópez-sáez 2022). on a more intervention-focused note, malta et al. (2023) documented the development and testing of the rainbow resistance, the dandarah app in brazil. the app was co-designed with lgbtq+ communities and aimed to address violence and discrimination through features like a panic button, mental health screening and mapping of safe services (malta et al. 2023). used by over 4000 individuals, the app played a crucial role in enhancing safety, facilitating access to support and documenting incidents of violence in schools, homes, healthcare settings and public spaces (malta et al. 2023). survivors shared how the app enabled them to seek protection and connect with shelters and counselling services. this intervention underscores the importance of community-led, inclusive digital tools in addressing technology facilitated violence (tfv) and supporting marginalised populations (malta et al. 2023). these studies show that lgbtq+ individuals face unique and compounded risks of technology-facilitated violence shaped by cultural, religious and legal factors. yet, they also demonstrate how these communities use digital tools to navigate, resist and build resilience within hostile online environments. what makes these survivors more vulnerable than the general female population firstly, the findings from the papers in this section suggest that women with disabilities and members of the lgbtqi+ community face heightened vulnerability to tfgbv compared to the general female population because of intersecting layers of marginalisation, structural inequality and social stigma (alichie 2023; jenaro et al. 2018). heightened vulnerability stems from social isolation, dependency and barriers to digital literacy, particularly for women with intellectual disabilities (jenaro et al. 2018). studies have shown that women with disabilities often rely more heavily on digital technologies for social interaction, support and autonomy, yet they are simultaneously at greater risk of abuse through these platforms (jenaro et al. 2018; marnewick et al. 2022). secondly, lgbtqi+ individuals experience tfgbv as an extension of systemic discrimination and criminalisation of their identities (alichie 2023). in many contexts, lgbtqi+ people face heightened surveillance, harassment and threats from both state and non-state actors, which often migrate to online spaces (alichie 2023; nova et al. 2023). mental health impacts and social stigma exacerbate the consequences of tfgbv for these populations. survivors of cyber-bullying and online harassment often experience symptoms of depression, anxiety and even suicidal ideation (maji & abhiram 2023; platero & lópez-sáez 2022). for people with disabilities, psychological harm from online abuse is intensified by existing social isolation, internalised stigma and the lack of accessible psychosocial support (jenaro et al. 2018). these impacts often go unaddressed because of institutional neglect and the invisibility of these groups in mainstream gbv discourse. thirdly, several studies in this scoping review identified socio-economic and contextual factors, such as low income, rural residence and limited education, as contributing to women’s vulnerability to tfgbv (alsawalqa 2021; bhimdiwala, adavi & arif 2024; friend 2023; kavasoğlu, eratlı şirin & uğurlu 2023). these conditions often correlate with reduced digital literacy and limited access to privacy and security tools, which hinder women’s ability to protect themselves online; these result in compounded vulnerabilities. marital status was also noted in a few studies, with some findings suggesting that married women may be less exposed to tfgbv (hashemi et al. 2024; zagloul et al. 2022). however, this correlation remains inconclusive and requires further exploration. other studies emphasised that women with public visibility, particularly journalists and sports figures, face heightened tfgbv because of their presence in male-dominated or politicised spaces (chen et al. 2018; kavasoğlu et al. 2023; koirala 2020; yalcinoz-ucan & eslen-ziya 2023). female journalists reported self-censorship or reluctance to promote their work in response to harassment, while female athletes expressed frustration that visibility essential for branding and sponsorship also exposed them to body-focused harassment (kavasoğlu et al. 2023). these cases illustrate how tfgbv not only undermines personal safety but also may have direct professional and economic consequences. impacts of technology-facilitated gender-based violence on survivors technology-facilitated gender-based violence significantly affects survivors across multiple dimensions, including psychological, physical, social, functional and aspirational. psychological impacts most studies reported significant psychological effects of tfgbv, including shame, guilt, anxiety, depression, post traumatic stress disorder (ptsd) and suicidal ideation (maji & abhiram 2023; zagloul et al. 2022). the pervasive and intrusive nature of online abuse creates a sense of constant surveillance, heightening fear and distress. these impacts often lead to reduced self-esteem and social withdrawal (aksar et al. 2020; mas’udah et al. 2024). physical impacts technology-facilitated gender-based violence frequently extends into offline harm. over half of the studies reported physical intimidation, assault, stalking and self-harm. survivors often encounter violence from perpetrators who initially engage online, blurring the boundary between digital and real-world abuse (sarkar & rajan 2023; tandoc, sagun & alvarez 2023). social impacts technology-facilitated gender-based violence contributes to social isolation, as survivors may retreat from digital spaces to avoid harassment, resulting in reduced support networks. reputational attacks through technology can also lead to community-based stigma and exclusion (hassan et al. 2020; balabantaray, mishra & pani 2023). functional impacts many survivors altered daily routines for safety, such as relocating, changing commuting routes or deleting social media accounts. this disruption affected productivity and participation in work or education, with some reporting absenteeism or reduced performance (asad & fatima 2024; kavasoğlu et al. 2023). aspirational impacts technology-facilitated gender-based violence negatively affected survivors’ goals and ambitions. fear of harassment discouraged engagement in public life, digital platforms and leadership roles, thus reinforcing existing gender disparities (asad & fatima 2024; chen et al. 2018). economic impacts several survivors reported economic harm, including blackmail using non-consensual recordings. these forms of digital exploitation jeopardised personal safety, reduced income opportunities and contributed to long-term financial insecurity (hassan et al. 2020; kwan 2022). discussion this scoping review set out to explore the existing body of evidence on tfgbv in lmics with a particular emphasis on the experiences of women with disabilities. one of the most striking findings was the near-total absence of peer-reviewed empirical studies that explicitly focus on women with disabilities in the context of tfgbv. this is a significant oversight, given extensive literature demonstrating that women with disabilities face heightened vulnerability because of overlapping structural disadvantages, including social isolation, economic dependence and a lack of access to digital literacy and assistive technologies (banks, kuper & polack 2017; huang & wang 2023). the lack of focused research on this population not only limits our understanding of their experiences but also perpetuates their invisibility in both academic and policy spheres. despite this gap, the scoping review revealed critical insights into how tfgbv manifests among women more broadly in lmics. intersectional vulnerabilities, such as being from rural areas, low-income backgrounds or marginalised ethnic or religious communities, further compound the risks and consequences of tfgbv. while only a small subset of studies examined these dimensions in depth, they indicate how overlapping forms of oppression can intensify the impacts of digital violence (bhimdiwala et al. 2024; koirala 2020). although women with disabilities are known to face disproportionately high rates of gbv in offline contexts, this review found a near-complete absence of empirical studies exploring their specific experiences of tfgbv in lmics. this silence in the literature is troubling, especially given broader research that highlights the compounded risks women with disabilities face because of factors such as dependency on caregivers, communication barriers, a lack of access to digital safety tools and social isolation (jenaro et al. 2018; marnewick et al. 2022). for example, survivors with intellectual disabilities have reported being targets of cyber-bullying through widely used platforms like whatsapp and facebook, often by known individuals such as classmates or acquaintances. the psychological toll of such abuse, marked by fear, sadness and depression, demonstrates the urgent need for tfgbv interventions that are accessible, inclusive and tailored to the needs of women with various forms of disability. in parallel, the intersection of sexual orientation and digital violence was vividly illustrated in several studies focusing on lgbtq+ individuals in countries such as bangladesh, nigeria and india. lgbtq+ users reported severe digital abuse, including online harassment, verbal and sexual bullying, blackmail and threats of outing, often driven by societal, religious or legal hostility (alichie 2023; maji & abhiram 2023; nova et al. 2023). in contexts where lgbtq+ identities are criminalised or heavily stigmatised, perpetrators leveraged online platforms to silence, shame and endanger queer individuals. across all the studies reviewed, tfgbv was shown to exert profound and overlapping impacts on survivors’ lives, psychological, physical, social, functional, aspirational and economic. the psychological toll was most prominent, with many survivors reporting experiences of anxiety, shame, suicidal ideation and depression (maji & abhiram 2023; zagloul et al. 2022). these were often compounded by social isolation, as survivors retreated from online spaces or were ostracised by their communities because of reputational damage from leaked content or harassment. the functional and aspirational impacts were equally troubling; survivors reported relocating, altering their daily routines or withdrawing from education because of safety concerns. in professional contexts, women working in journalism, sports, and sex work faced digital blackmail and reputational attacks that directly undermined their income and opportunities for advancement (chen et al. 2018; kavasoğlu et al. 2023). these findings challenge the notion of tfgbv as a solely digital phenomenon; instead, it emerges as a form of violence with real-world consequences that compromise survivors’ autonomy, safety and future prospects. in light of these findings, there is an urgent need for inclusive, intersectional and survivor-centred approaches to addressing tfgbv. this includes investing in research that foregrounds the experiences of the most marginalised, including women with disabilities and lgbtqia+ individuals, in diverse lmic contexts. interventions must be co-designed with affected communities, taking into account not only their technological needs but also their social, cultural and political realities. promising examples such as the rainbow resistance dandarah app in brazil, which includes safety features designed by and for lgbtq+ users, illustrate how digital tools can be reimagined as instruments of safety and empowerment. however, such efforts remain the exception rather than the norm. systemic change will require coordinated efforts across digital policy, education, public health and gender justice sectors to ensure that digital spaces are safe, inclusive and equitable for all women. conclusion this first part of the scoping review offers critical insights into the landscape of tfgbv in lmics, highlighting the pervasive and multifaceted nature of such violence. the findings confirm that tfgbv is not limited to the digital realm; rather, it is deeply entangled with offline realities, manifesting in physical, psychological, social, functional, aspirational and economic harms. while the use of technology to enable violence was the most prevalent theme, there is also emerging evidence of its use as a protective and empowering tool, particularly through community-based and survivor-led digital interventions. yet, such protective uses remain underexplored and under-implemented, and the overall evidence base is still uneven and fragmented, especially in relation to marginalised populations. the review also reveals critical gaps that demand urgent attention. most notably, there is a stark absence of focused research on the experiences of women with disabilities in the context of tfgbv, despite existing evidence suggesting that these groups are at heightened risk. similarly, intersectional dimensions such as class, rurality, ethnicity and digital literacy remain understudied. to our knowledge, this scoping review is novel in its approach to capturing tfgbv evidence focused on the intersectionality of technology-facilitated violence and women with disabilities in lmic settings. the next part of this review will provide insights into the trends; common behaviours and characteristics of perpetrators and survivors, risks and protective factors against tfgbv. acknowledgements this article is based on data from a larger study. this article presents the scoping review findings from a related article, detailing the scoping review protocol, which has already been published in the bmj open journal, 15(3), https://doi.org/10.1136/bmjopen-2024-093988. a preprint version of this work was previously published on the open science framework (https://doi.org/10.17605/osf.io/gz2ur), and we acknowledge its role in shaping the final manuscript. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. credit authorship contribution babalwa p. tyabashe-phume: conceptualisation, data curation, formal analysis, investigation, methodology, visualisation, writing – original draft. eunice tunggal: formal analysis, methodology, investigation, writing – original draft. shaffa hameed: conceptualisation, formal analysis, investigation, methodology, writing – review & editing, visualisation, data curation. xanthe hunt: formal analysis, methodology, writing – review & editing. karen soldatić: conceptualisation, methodology, writing – original draft, supervision,. lieketseng ned: conceptualisation, funding acquisition, methodology, project administration, supervision, writing – original draft. all authors reviewed the article, contributed to the discussion of results, approved the final version for submission and publication and take responsibility for the integrity of its findings. funding information the author reported that they received funding from the sexual violence research initiative, with stellenbosch university (grant number: s009253) and the canada excellence research chair in health equity & community wellbeing (grant number: cerc-2022-00097), which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. data availability the authors declare that all data that support this research article and its findings are available in the article and its references. disclaimer 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authors: relebohile phatoli1 nontembeko bila2 eleanor ross3 affiliations: 1department of social development, gauteng government, south africa 2department of criminology and social work, university of pretoria, south africa 3centre for social development in africa, university of johannesburg, south africa correspondence to: eleanor ross email: eleanorross.123@gmail.com postal address: po box 524, auckland park, johannesburg, south africa dates: received: 13 dec. 2013 accepted: 05 nov. 2014 published: 22 may 2015 how to cite this article: phatoli, r., bila, n. & ross, e., 2015, ‘being black in a white skin: beliefs and stereotypes around albinism at a south african university’, african journal of disability 4(1), art. #106, 10 pages. http://dx.doi.org/10.4102/ajod.v4i1.106 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. being black in a white skin: beliefs and stereotypes around albinism at a south african university in this original research... open access • abstract • introduction    • problem statement       • key focus • background    • trends    • objectives    • contribution to the field    • literature review • research method and design    • materials    • setting    • design    • data collection procedure    • recruitment procedures • analysis    • ethical considerations    • trustworthiness • results    • description of participants       • perspectives of people with albinism    • perspectives of people without albinism    • the interaction between the participants with albinism and those without albinism    • views of both groups regarding the way forward • discussion    • limitations of the study • conclusions and recommendations • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: partly because of the legacy of apartheid, and despite being a constitutional democracy, south africa continues to be a deeply divided society, particularly along racial lines. in this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation. objectives: the study endeavoured to explore the beliefs and practices regarding albinism within a south african university, and the availability of support services. method: the research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. interviews were conducted with five students with albinism and 10 students without albinism. results: findings confirmed the existence of myths and stereotypes regarding albinism. students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition. conclusion: people with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof. introduction top ↑ the term albinism is derived from the latin albus meaning white. according to nasr (2010), albinism is a genetically inherited, autosomal recessive physical condition where there is a shortage or absence of the melanin pigment which affects the eyes, hair and skin. people living with albinism are particularly vulnerable to skin cancer and a range of eye problems that can lead to blindness. however, these complications may be prevented by wearing dark glasses and appropriate clothing and by lifelong use of an anti-actinic skin cream (lund & gaigher 2002). estimates of the prevalence of albinism in africa range from one in 5000 to one in 15 000 with approximately one in 4000 individuals in south africa. this condition occurs more frequently amongst black people than amongst other population groups (hong, zeeb & repacholi 2006). problem statement although most people with albinism tend to have light hair, skin and eyes, their other facial features and hair texture resemble those of africans and they are usually born into black african families; hence they tend to identify with the black rather than white community. nevertheless, because of their differences they do not fit neatly into either the black or white groups and tend to be subject to various myths and stereotypes. although mohamed adhikari (2005) was focusing on the south african coloured community rather than persons with albinism when he wrote the book not white enough, not black enough: racial identity in the south african coloured community, this phrase would seem to encapsulate the contradictions, ambiguities and complexities of albinism. key focus stigmatisation and ‘othering’ of people with albinism is particularly salient in south africa given its long history of separate development, power differences and institutionalised racism, and the continued existence of these divisions. despite being a constitutional democracy, post-apartheid south africa ‘... is still very much a divided society with new kinds of cleavages within and between different ethnic and racial population groups’ (terreblanche 2012:15). this article focuses on the experience and contradiction of being a black person in a white skin within such a divided context. background top ↑ people with albinism face teasing, staring, and well-meaning but ignorant questions about their condition (nasr 2010). anecdotal evidence from nasr (2010) indicates that when people see an individual with albinism, they often make comments like, ‘... the lightning struck his mother during pregnancy and this enables him to read people's thoughts’. in 2012 the director of the albinism society of southern africa reported: when we get into taxis, people still move to the other side, or even refuse to use that taxi. we are still called isishawa (a zulu word for a person who is cursed) and inkawu [an nguni word for ‘white baboon’]. (fazel 2012) in the folktales of some cultures people with albinism are portrayed as cannibals whilst in zimbabwe it is thought that having sex with a woman with albinism will cure a man of hiv. ntinda (2008) states that in some parts of africa, people with albinism are perceived as ‘sacrificial lambs’, from the biblical metaphor for someone or something that is sacrificed for the good of others. in the case of these individuals, they are wanted for their hands or genitals which are considered to be the body's strongest parts. people with albinism are hunted for their body parts, as they are believed by some to possess supernatural or magical powers. if you are married to an albino it is believed that you will be a very lucky man or woman. according to de groot (2010), people with albinism in tanzania, kenya, zimbabwe and other parts of africa experience threats to their safety as a result of superstitions which thrive in times of economic deprivation. in response to the widespread disappearance and killing of people with albinism in tanzania, burundi, and other east and central african countries, the united nations officially declared people with albinism ‘persons with disabilities’ in 2008 (fazel 2012). as a signatory to the united nations convention on the rights of persons with disabilities, south africa has undertaken to take into consideration the protection and promotion of the human rights of persons with disabilities in all policies and programmes. the convention recognises that disability results from the interaction of persons with impairments and attitudinal and environmental barriers that prevent their full and effective participation in society. it further acknowledges the importance of influencing policies at the national, regional and international levels in order to equalise opportunities for persons with disabilities and to promote and protect their human rights. at the same time, the document acknowledges that despite these various undertakings, persons with disabilities such as albinism continue to confront barriers to full participation as equal members of society and experience violations of their human rights. trends the continued existence of discriminatory beliefs and practices in relation to albinism can be partly explained in terms of the theories of ‘othering’ and stigma. nevertheless, despite the prevalence of stigma and discrimination, many people with albinism have succeeded in a variety of fields and occupations. moreover, a study conducted at the university of venda, in limpopo, south africa, found that students with albinism could participate in mainstream education with appropriate intervention to help them manage the problems associated with their low vision and sensitive skins (mashau 2012). objectives given this backdrop, the main aim of this pilot study was to investigate the attitudes of two groups of south african university students concerning albinism, those with and those without albinism. specific objectives were: to explore the knowledge and understanding of albinism; friendships between students with and without albinism; beliefs and stereotypes and their impact on the self-image and confidence of persons with albinism; and challenges confronting university students with albinism and support services available to them. contribution to the field according to braathen and ingstad (2006), there is a paucity of empirical research undertaken on this condition; hence it was anticipated that this research would add to the current knowledge of albinism and might help conscientise professionals about the challenges confronting people with this condition. it was also envisaged that the research might assist disability units at various universities to formulate policies designed to support students with albinism. literature review sociologists have developed a theory of ‘othering’ to describe the processes whereby people who are different tend to be perceived as increasingly alien and distanced (cromer 2001). this distancing and alienation leads to the emergence of a dividing wall of hostility and suspicion between the insider and outsider, with those on the outside being perceived as ‘others’ and less desirable than ‘insiders’. some theorists regard othering as a key dynamic underpinning stigma (deacon, prosalendis & stephney 2005). as early as 1963, goffman developed what has become the benchmark social theory of the association between stigma and disease. goffman (1963:13) described stigma as ‘... an attribute that is deeply discrediting, and is socially constructed on the basis of what society regards as being different or deviant’ (green 2009). in a similar vein, hawkesworth (2001) indicates that the faces of people with albinism are visually affected by their condition. nothing is more visible than the face and to be defined by society as facially disfigured, indicates an aesthetic aversion towards those who have a different appearance or deviate from specific conceptions of the so-called ‘normal’ body. goffman (1963) also referred to the association between stigma and a ‘spoiled identity’. it is therefore of interest that wan (2003) in her study of 12 persons with albinism, emphasised that the so-called ‘normals’ were the ‘identity spoilers’ or cause of the problem. for example, lund and gaigher (2002) found that respondents in their study felt that people with albinism had fewer friends than people without albinism, and experienced difficulties in mixing at social gatherings. according to deal (2007), negative beliefs and attitudes which make people with disabilities feel devalued or insecure are likely to influence the individual's psychological well-being and can create subtle forms of self-oppression. in addition, deal (2007) refers to aversive disablism which denotes discriminatory, oppressive or abusive behaviour arising from the belief that people with disabilities are inferior to others. moreover, with aversive disablism people with disabilities tend to favour the able-bodied, which may exacerbate the negative emotional effects experienced by people with disabilities (deal 2007). campbell (2008) refers to internalised ableism whereby people assimilate the norm that requires persons with a disability to embrace or assume an identity other than their own. ‘moreover, internal oppression is not the cause of people with disabilities’ mistreatment but is the result of their mistreatments. it would not exist without the real external oppression that forms the social climate in which people with disabilities exist’ (mason, cited in marks 1999:25). once oppression has been internalised, marks (1999) believes that people with disabilities harbour the pain, memories, fears, confusions, negative self-images and low expectations, turning these into weapons with which to re-injure themselves. herek has endeavoured to build on the earlier work of goffman and has published extensively on the concept of stigma. although his work focusses predominantly on stigma in relation to homophobia and aids, many of his ideas would seem to be applicable to albinism. he discusses the various dimensions on which different stigmas can be ordered. these include: concealability (the extent to which the stigmatised condition is hidden or obvious). disruptiveness or obtrusiveness (the extent to which it interferes with the normal flow of interaction). aesthetic qualities (whether the condition is repellent, ugly or upsetting). the origin of the condition including the affected person's perceived responsibility for its cause or maintenance. the course of the stigma (whether the condition is unalterable or degenerative). the peril posed by the condition (the extent to which people believe they can be physically, socially or morally tainted by interaction with the affected person (herek 1990). these psycho-social dimensions influence how stigmatising conditions are socially constructed. according to herek (1990), cultural images develop of individual persons as well as communities of affected individuals and are grounded in attitudes and prejudices. these cultural constructions often give rise to competing moral and pragmatic viewpoints. moralists endeavour to define the condition as a manifestation of spiritual or supernatural forces with the condition being perceived as a punishment or test from god. in contrast, pragmatists tend to look for the scientific explanation for the condition. these world views influence the societal responses to the condition and whether affected individuals are ostracised or treated with compassion. herek (1990) explains that individual manifestations of stigma represent the intersection of psychological processes with the cultural construction of the condition. more recently, herek distinguished between four types of stigma. enacted or external stigma refers to negative actions against minorities, such as shunning, ostracism, moral judgement, overt discrimination, and abuse. felt stigma refers to the expectations about the circumstances in which the stigma will be enacted. internalised or self stigma refers to the personal acceptance of negative societal attitudes and attendant fear and vigilance as part of one's value system or self-concept. courtesy or associative stigma includes family members, health workers, informal carers, and volunteers working in albinism organisations who are not necessarily directly affected by albinism (herek 2014). levels of stigma are also influenced by the levels of knowledge and understanding that people have about the condition, as well as pre-existing attitudes to other groups, for example attitudes towards persons of other ethnic or racial groups (herek 1990, 2014) and are particularly salient in south africa with its history of apartheid and divisions along racial lines. the aforementioned concepts and theories served as the theoretical framework under-pinning the study objectives. although previous studies on albinism have drawn upon these theories, there is a paucity of research focussing on the lived experience of what it is like to be a black person with a white skin in south africa. hence it was envisaged that the present study would fill part of this gap in the research literature. research method and design top ↑ materials the research focused on two different samples of participants recruited through non-probability sampling. the first sample comprised students with albinism studying at a south african university. the second sample comprised students without albinism attending the same university. the research tools included two different interview schedules – one for the students with albinism and one for those without. setting at the time that the study was undertaken, the first author was a student without albinism at a south african university who was interested in the views of her fellow students regarding this condition. interviews were conducted on the campus. design this pilot study was located within a qualitative research paradigm. according to williams et al. (2011:53), ‘... the qualitative research approach is based on the interpretive perspective, which states that reality is defined by the research participants’ interpretations of their own realities’. data collection procedure data were collected via semi-structured interviews for the students with albinism and for those without. initially the plan was to interview 10 persons from each group. however, because of the limited number of albino students, it was only possible to recruit five persons with albinism for participation in the study. recruitment procedures participants with albinism were recruited through non-probability purposive sampling. a purposive sample is purposively selected by the researcher based on the researcher's judgement (babbie 2013). the first author consulted with the director of the disability unit at the university who allowed her to put up posters to inform students with albinism about the study. the other sampling procedure utilised for the students with albinism was snowball sampling, a technique that begins with a few relevant participants and extends participation through referrals (babbie 2013). non-probability availability sampling was utilised to recruit students without albinism. the researcher approached people at the student centre and those sitting on the library lawns and invited them to participate in the study. the weakness of this sampling procedure is that it lacks scientific rigour and does not allow for generalisation of findings. the strength of this sampling procedure is that it is easy and inexpensive to conduct (terre blanche, durrheim & painter 2006). however, there was minimal interest in participation amongst students without albinism and it is possible that some students might have been reluctant to reveal their lack of knowledge regarding the condition. analysis top ↑ the process of thematic content analysis was utilised to analyse data from the interviews. content analysis is defined by grinnell and unrau (2011:561) as ‘... a data collection method in which communications are analyzed in a systematic, objective, and quantitative manner to produce new data’. the process of data analysis followed the steps recommended by terre blanche et al. (2006) namely familiarisation and immersion, inducing themes, coding, elaboration, and interpretation and checking. ethical considerations permission was granted by the disability unit of the university to conduct the study and ethical clearance was obtained from the university's non-medical ethics committee. indirect benefits included the enhancement of knowledge gained from the study. in order to prevent harm, participants’ privacy and confidentiality was respected and counselling was offered to participants experiencing distress. potential participants were assured that participation was voluntary and that they had the right to withdraw from the study without negative consequences. participants were given an information sheet explaining the purpose and procedures of the study and their rights as research participants. thereafter, they signed informed consent forms. all information was kept confidential and no identifying details were included in the final report. they were assured that all raw data would be kept in a locked cupboard for two years following any publications and for five years if no publications emanated from the study. thereafter all raw data would be destroyed. trustworthiness in order to enhance validity and reliability of data collection a pre-test of the research tools was conducted with one student with albinism and one without who were excluded from the final study. based on recommendations from the pre-test, both interview schedules were amended accordingly. all interviews were conducted by the first author. in order to further enhance the trustworthiness of the data, the four constructs of credibility, dependability, confirmability and transferability were taken into consideration (trochim 2006). the researchers endeavoured to enhance credibility or plausibility of the study by providing a detailed theoretical framework, aligning the questionnaires with the theoretical framework and by pre-testing the research tool. in order to enhance dependability or replicability of the study the same questionnaires were given to all the participants by the same researcher. however, the use of a small, non-probability sample precluded transferability or generalisation of the findings to the broader population of persons with albinism or university students. in terms of confirmability, an objective independent colleague checked the categorisation of themes presented by the primary researcher for correspondence. after reaching agreement on the themes, these were quantified. results top ↑ results are presented in accordance with three areas of analysis highlighted by herek (1990), namely, the subjective experience of persons with albinism, the knowledge and attitudes towards albinism of persons without albinism, and the interaction processes through which the two groups negotiate their respective roles in social interaction. thereafter, the view of both groups are presented regarding the way forward. table 1: profile of participants (n = 15). description of participants perspectives of people with albinism for participants with albinism, understanding of the condition was based on how it had affected their lives and their own personal experiences with the condition. three of the five participants understood the condition of albinism based on medical aspects. this theme was captured in the following statement: ‘for me albinism is a hereditary condition characterised by the complete or partial absence of pigment in the hair, skin and eyes’. in contrast, two out of the five participants expressed their understanding and knowledge of the condition of albinism based on how the environment had treated them and how they were perceived by others. this theme was captured in the following verbatim quote: ‘honestly, i think albinism is a curse because people always stare at me, talk about me behind my back and also make very nasty remarks when i pass, saying that i do not know that my father is not black but is a white person and that is why i look the way i do’. participants living with albinism reported having experienced discrimination from people without albinism. they felt that they were seen as outcasts and most of the time they had to prove that they were normal people and that they could do things and achieve as well as people without albinism. this was encapsulated in the following statement: ‘it has been extremely difficult to live with albinism. i always have to prove myself, work extra hard and put in more effort into everything so that people can see me as ‘’normal”’. another participant explained: ‘i always thought that for me it was normal, but sometimes i find myself in a situation whereby i have to explain my condition to other people so that they see me as normal and as one of them. so when i think of it, it was kind of hard because people without albinism are not treated the way we are treated’. the participants informed the researcher that their friends and neighbours or people who knew them treated them well and made them feel comfortable and normal. however, with strangers it was difficult and they did not like being in such environments because people tended to stare at them. this theme was reflected in the following statements: ‘once people get to know me then they relax and see me as a normal person but for people who don’t know me they stare at me’. racial stereotyping was evident in the following response: ‘people don’t treat me the same. there are some who do not treat me normally and are always staring at me and they say bad things about me, things like maybe my father is not really my father, or maybe my mother had an affair with a white man’. participants with albinism also reported being aware of beliefs regarding it. one participant mentioned that he had heard that in uganda they chopped off the heads of people with albinism and used these body parts for muti [traditional medicine]. another participant stated that she had been told that when people with albinism died they turned into salt and they were only buried at night and not during the day like everyone else. the remaining three participants had heard stories about using bones from people with albinism for good luck and muti, as well as identifying them as a curse on the family and a punishment from god. three out of the five participants with albinism appeared to have been negatively affected by the stereotypes and beliefs around albinism as reflected in the following statement: ‘these beliefs and stereotypes have affected me because as a child other children always used to ask if they are true or not and because of that i have a low self confidence, and other people don’t see me as normal’. however, the remaining two participants reported that these stereotypes did not exert much of an effect because of the support from their families and loved ones. three out of the five participants reported experiencing some childhood challenges because of the people in their communities. for one participant, childhood was not affected in any way. it was only when she was older that she understood what was said about her so that she had to take extra care of herself just to prove that she was normal. however, for the other participant, growing up was not difficult because of the confidence that she had gained from the support of family and friends. perspectives of people without albinism three of the ten participants without albinism showed no knowledge and understanding of the condition, as encapsulated in this response: ‘no i don’t know anything about albinism, i just know that it is people who are too light and have strange eyes because most of the time their eyes are rolling around and they don’t keep still’. five of the participants without albinism showed some knowledge without fully understanding the condition, having heard about albinism through the media and from other people. for example: ‘honestly, i have little knowledge about albinism. i just know that they have a skin problem, different from our skin and they should avoid too much exposure to the sun’. ‘i know that they are stigmatised and people do not have much knowledge about albinism and their genes, they relate to them to be a curse and culturally they are stigmatised in the communities. people like me do not get time to know about their biological genetic formations’. the remaining two participants without albinism showed in-depth knowledge of the condition from the subject, life orientation, which had been taught at primary and high school and from their relationships with people with albinism. one of them stated that as a result of constant interaction with a person with albinism: ‘i had to learn about this condition and that helped so that i could see him as a person like me and not discriminate against him, even though there were some stigmas around albinism, they did not change my views about my friend because i know about his condition’. the other participant also shared her understanding of albinism by stating: ‘it is a skin condition that is related to pigmentation. it is a lack of melanin, and if you have a lot of it you are darker and if you have a small amount you are lighter. albinos do not have it and for me i see it as more of a skin condition rather that a disease. people with albinism often have eye problems and that shortage of the pigment is also present in the hair and that makes their hair colour to become lighter or blonde’. from the study it emerged that 9 of the 10 participants without albinism did not have any relatives with albinism and only two participants reported having friends with albinism. the one participant explained his relationship with a few people in his life who had albinism as follows: ‘i have people who are very close to me, whom i have considered them not only as my friends but as relatives. like my pastor at church, he is a father figure to me and i look up to him, and i also have a friend whom i consider to be my brother because we are very close. at res in primary and high school where i was he used to be my best friend, we used to share food, share a bed and we also did everything together, even study together and that is how he became a brother to me’. the other participant reported that she had never had an albino friend or relative but her mother used to have a close friend with albinism at nursing school. consequently, she developed an interest in learning about the condition because when her mother told her about her friend she had emphasised the latter's beauty and generosity. when the participants without albinism were asked if they would date a person with albinism, 6 of the 10 participants said they would not do so. this theme was reflected in the following quotes: ‘i will be scared of intimacy with them’. one student commented: ‘i don’t think i would because i am scared at the way they look at people. their eyes are always moving and sometimes they can’t stay in one position. i would also be scared of having a child with albinism’. another participant reflected: ‘i don’t have a reason why i would not but i just don’t think i would’. only one participant stated that she would be prepared to have a relationship with a person with albinism. she commented: ‘i am not stereotyped. i would judge a person by their attitudes and their behaviour. other albinos are cute and look very handsome with good physical structures, however, their attitudes will determine if i would date them or not’. the remaining three participants had mixed emotions about dating people with albinism. for example: ‘i am not opposed to it, and since people with albinism are such a minority i think there are slim chances that i would find a person with albinism whom i like and get along with. i also have my own stereotypes about albinism and that would make it a challenge’. another participant expressed the influence of religious views as follows: ‘if the lord says so then i would because he is the one who is directing my love life at the moment’. the influence of cultural beliefs and practices was captured in the following response: ‘it is a very difficult question, but i don’t have anything against albinos. i regard them as normal people. my experience and beliefs will not deny me the opportunity, however, in my culture [african culture] you don’t get married only for yourself but it is for the whole family, so it will be very difficult to convince them and educate them about albinism’. when the participants were asked if they would make friends with people with albinism, 9 of the 10 replied in the affirmative, based on the belief that they were human beings just like everyone else; however, they would not have intimate relations with them. one participant indicated the influence of myths and stereotypes when he mentioned the reasons why he would not make friends with them: ‘i was told they contain bad luck and even when i was very young i was not friends with a boy in our street because he was an albino’. it emerged that all 10 participants without albinism were aware of beliefs and stereotypes regarding albinism as reflected in the following quotes: ‘albinos don’t die, they just go missing and they disappear. last year when i was pregnant, i was told that i must not look at the albinos because if i do i will get a child with albinism or if i do look at them by mistake i should spit at them to avoid a child with albinism’. ‘when i was growing up i was told that albinos are ugly and they are not physically attractive, i also remember that they used to say that children with albinism are the results of their parents’ evil doing so they were considered as a curse in the community’. ‘from where i come from there are very few albinos, but i have worked in tanzania, congo, and in zimbabwe. in zimbabwe they believe that if you are hiv/aids positive and you sleep with an albino you will get cured from the disease. in tanzania, they believe that albinos have magical powers. if you kill an albino and you have a bone you can get rich. the private part of an albino, the blood, hair and flesh will make you rich and help you get a promotion at work. i also remember a testimony of a woman from tanzania, who is the first woman with albinism in parliament. this woman said that when she was growing up people would refer to her as a ghost and her friend's parents would not let her friends play with her or even share a bed with her because then her friends’ mothers would have babies with albinism’. ‘in my community they still believe that when you pass an open fire you should spit in your own shirt because if you don’t then it will bring you the bad luck of having a child with albinism in the future. this only applies to females and girls of all ages but mostly to girls who don’t have children yet. they used to say a child who is an albino brings bad luck into the family because they are a result of witchcraft so they use them for muti’. the interaction between the participants with albinism and those without albinism nine of the ten participants without albinism reported having no relationships with students with albinism. they attributed this to the fact that there were only a few students with albinism at the university where the study was conducted and hence they did not attend the same lecture courses or move in the same circle of friends with them. this theme was captured in the following statement: ‘i see them around but i don’t have any personal relations with them. they are very few and they usually exclude themselves from the rest of the other students. i don’t see them very often and when i do see them they are often by themselves or with their usual small group of friend’. one participant had a relationship with a student with albinism because they were in the same student residence. they had initially started their relationship by greeting each other, and had subsequently become mutual friends. of the five participants with albinism who participated in the study, three reported negative experiences of being a university student. they felt that because of other students’ ignorance and lack of knowledge about the condition, they sometimes had to defend themselves and always remind themselves that they were ‘normal’ persons. in class it was sometimes difficult for them to read lecture notes and writing on the board, and they did not want to continually depend on the other students. however, the remaining two participants acknowledged that if they did not know people and if they were not confident then it was hard for them. however, it helped if they were confident and they avoided unfamiliar environments where their friends were not present. challenges included fitting in with the rest of the population and other students, keeping up in lectures because of the difficulty of reading lecture notes, being excluded by other students and other students staring at them and talking about them behind their backs. it emerged that the social environment played an important role in shaping their behaviour. the participants stated that at school, if the other students treated them badly and teased them about their skin colour and their eyes, they would have negative thoughts and emotions about who they were. however, because their families had been supportive, they had succeeded in coming to university, following their chosen careers, and making sure that they did what ‘normal’ people do. they reported that the careers, counseling and development unit (ccdu) and the disability unit (du) at the university concerned had been the best social support systems in their environment. however, some people in the participants’ social environment related to them in the way they did because of their condition. for example, their family and friends would always offer to share things like an umbrella or skin protection lotions without considering that they had the means to take care of their skin. nine of the ten participants without albinism reported that they found it easier to make friends with students who did not have albinism, because there were far more students without albinism at the university and the students with albinism tended to distance and exclude themselves from the other students. however, one participant stated that it was taboo to have a friend with albinism and because of the stereotypes around albinism: people would stare at you if you had a friend with albinism. three participants with albinism found it easier to make friends without albinism than ones with albinism at the university because of the minority of the students with albinism. these participants stated that they saw themselves as normal people rather than just people with albinism. the one participant had no problem with either students with or without albinism. in her view people were just people no matter their condition. views of both groups regarding the way forward the 10 participants without albinism felt that it was important for them to know more about the condition and to know how people with albinism deal with the stereotypes about it. one participant stated that from the medical side he wished to know about the genetic factors underpinning albinism so that he could understand more about their skin pigmentation and to find out what went wrong with their genes. furthermore, he wanted to learn about traditional healers’ views on the causes of albinism and why they believe that it only comes once in each generation of a family. participants with albinism believed that social workers had a role to play in assisting all students with albinism at university. it emerged that the students with albinism felt that social work services could be most valuable to first year students with albinism, especially during orientation week because it would help new students to socialise better, boost their self-confidence and gain social support. it was suggested that social workers needed to facilitate support groups and education programmes for both students with and without albinism, because students who wanted to know about the condition could have open discussions about it with students with albinism. such activities would afford the latter opportunities to interact with more people without albinism and have an open platform to discuss the stereotypes and acquire more knowledge. furthermore, such an approach could potentially enhance their sense of agency and thereby achieve social change. participants with albinism stated that they wanted to be treated like normal people and for others to not treat them like they had a disease. they expressed their concerns by stating: ‘people need to know that we have feelings and that we are normal just like them. it is important for them to know that their stereotypes affect us and they hurt us because we do not know what we did in life to deserve such criticism from them. we also deserve to be treated with respect’. ‘people should just realise that we are normal people just like them and that sometimes it is difficult to deal with all those stereotypes and beliefs they have about us or albinism in general because even when they are not talking about you, you immediately assume that are’. discussion top ↑ findings from the present study suggested that several of the participants lacked knowledge regarding albinism, which may be attributed in part to the fact that very few participants had relatives or friends with albinism. similar results were obtained by lund and gaigher (2001) who conducted a study in the capricorn district, limpopo, south africa, and found that 28 out of 38 participants did not know what caused albinism. braathen and ingstad (2006) also found that many of the 25 people with albinism and their family members whom they had interviewed in malawi had very little knowledge about the condition although they were aware of the need to take precautions to prevent excessive sun exposure. persons with albinism found it difficult to interact with strangers although friends and relatives treated them well. the fact that they tend to avoid interactions with the broader student body suggests that they experienced the type of alienation highlighted by fanon (1967) in his classic text black skin, white masks. persons without albinism indicated their willingness to befriend persons with albinism whilst not necessarily going on dates with them. however, the limited number of students with albinism restricted opportunities for socialising. all the participants with albinism had experienced the discrimination and stigma described by goffman (1963) and herek (1990; 2014). results suggested the existence of both enacted and perceived stigma in relation to persons with albinism. the fact that one participant reported having ‘... spat upon a person with albinism’ is a blatant example of enacted stigma (herek 2014). both these forms of stigma may have severe social consequences for people in terms of their rights, self-identity, freedom and social interaction, and they may have far-reaching psychopathological ramifications for the affected person. in this respect, herek (1990) maintains that stigma may affect an individual's self-concept and self-esteem. some participants with albinism tended to adopt the coping mechanism of excluding themselves from the rest of the student population in order not to be judged or discriminated against. according to herek (2014), perceived stigma relates to feelings of shame and the oppressive fear of enacted stigma and predisposes the stigmatised persons to avoid exposing their condition to protect themselves from experiencing discrimination. it is characterised by self-exclusion from services, alienation and social withdrawal, loss of identity, poor self-image, and overcompensation. such social isolation strategies often have negative psychological consequences such as depression and anxiety (herek 2014). findings also alluded to the use of labelling, stereotypes, and ‘othering’ in relation to persons with albinism. according to green (2009), labelling occurs where human differences are noted and labelled; stereotyping, where labels are imbued with negative stereotypes; and othering, where labelled persons are categorised as ‘other’ or ‘them’ in order to clearly separate ‘them’ from ‘us’. in line with herek's (1990) theory on stigma, it was also evident that culture exerted a significant influence on the understanding of students without albinism regarding the phenomenon under discussion. in this regard, ntinda (2008) postulates that albinism is surrounded by many cultural beliefs, superstitions and stereotypes especially in africa with its diverse cultures. for example, the perception that albinism was caused by a black woman sleeping with a white man, highlights the intersection of race, colour and gender in the social construction of such beliefs. the view that albinism was caused by the parents’ evil actions was consistent with fanon's (1967) idea of projection in his discussion of psychopathology, and herek's (1990) notion of assigning blame for the condition. similarly, the fear of having a baby with albinism if one associated with such a person during pregnancy was in line with herek's notion of peril and contamination. the fact that some participants were prepared to befriend persons with albinism but would nevertheless not want to go on dates with them, illustrated the need to maintain a degree of social distance. these negative cultural beliefs in turn affected the self-confidence of persons with albinism. their need to work harder to overcome these stereotypes suggests the use of the defence mechanism of over-compensation emphasised by fanon (1967). participants without albinism referred to the role of the media in influencing their attitudes towards albinism. in this respect, hawkesworth (2001) affirms that the stereotypes, visual images and jokes about facial disfigurement often occur in the mass media. in the study conducted by hawkesworth (2001) the respondents believed that the media influenced responses to facial difference. challenges included difficulty fitting in, coping with ignorance, being stared at, and problems associated with reading lecture notes and lecturers’ writing on the board. nevertheless, they were able to derive support from families, friends and the disability unit at the university. limitations of the study the limitation of using non-probability sampling is that it precluded generalisation of the findings to the broader population of persons with albinism. moreover, there were only a limited number of students with albinism, several of whom were reluctant to participate in the study. hence the study needs to be replicated on a larger, more representative sample. the fact that the researcher did not have albinism may also have influenced participants’ responses. in addition, the sensitive nature of some questions may have resulted in the furnishing of socially desirable responses. conclusions and recommendations top ↑ three main conclusions could be drawn from this study. firstly, the stereotypes, beliefs and lack of knowledge around albinism dramatically affected the way people without albinism interacted with people with albinism which in turn influenced the way people with albinism in the study viewed themselves and how they needed to present themselves to prove their worth. secondly, participants with albinism tended to exclude themselves from the rest of the population in order not to be judged or discriminated against. according to herek (2014) such social isolation strategies often have negative psychological consequences. perceived stigma on the other hand relates to feelings of shame and the oppressive fear of enacted stigma and predisposes the stigmatised persons to avoid exposing their condition to protect themselves from experiencing discrimination (green 2009). it is characterised by self-exclusion from services, alienation and social withdrawal, loss of identity, poor self-image, and overcompensation. thirdly, those persons who had become friends with people with albinism were able to value and appreciate the person behind the condition. from the research responses, it emerged that some schools provide knowledge and awareness programmes about the condition of albinism in the life orientation curriculum. it is therefore recommended that learners in schools in both rural and urban areas be taught about this condition as part of their syllabus in order to counteract prevailing myths and stereotypes about albinism. social workers and other helping professionals need to educate parents, learners, teachers, families, traditional healers and the general public about the aetiology of albinism, effects of discrimination against people with albinism, ways of treating people with the condition and how to handle discrimination as a person with albinism. the media also need to consider the way in which they portray people with albinism (ekurhuleni declaration on the rights of persons with albinism 2013) in addition, there is a need to open up communication channels between people with and those without albinism so that they can share concerns and ways of alleviating problems arising from cultural beliefs and stereotypes. exposure of the public to persons with albinism can potentially demystify the condition and create positive encounters. for example, ash et al. (1997) found that college students who had attended school with disabled pupils were more likely to have friendships with disabled students at the college level than those who had not had previous exposures. consequently, people living with albinism can potentially play an active role in breaking the cycle of stigma and discrimination. as reeve (2002) emphasises, disabled people are not simply passive victims of ‘emotional disablism’. many exercise agency and resist negative stereotypes. counselling and career development units as well as disability units at universities and further education and training (fet) colleges need to engage in education and awareness programmes with university students and lecturers regarding the condition of albinism, the impact of beliefs and stereotypes on persons affected by this condition, and the challenges posed by tertiary environments such as reading lecture notes. they need to ‘deconstruct’ albinism by identifying the symbolic images, metaphors and stereotypes surrounding the condition. they also have a responsibility to provide individual counselling and group support programmes to assist students with albinism to integrate more successfully within the university environment. albinism societies also have a pivotal role to play in advocating for the rights of people with albinism. according to herek (1990; 2014), such groups help people to understand and overcome their stigmatisation. in conclusion, the study allowed the voices of a group of persons with albinism to be heard as well as those of their university counterparts without the condition. the message that came across strongly was the need to enhance knowledge and awareness of albinism and thereby create a safer, more just, humane and caring society where the rights of all groups are respected, including those with albinism. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationships(s) that may have inappropriately influenced them in writing this article. authors’ contributions r.p. 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hansen1 albert p. chaki2 ruth mlay2 affiliations: 1duquesne university, pittsburgh, united states2ccbrt-moshi, tanzania correspondence to: anne marie hansen postal address: 220 rangos school of health sciences, duquesne university, 600 forbes ave, pittsburgh, pa 15282 usa dates: received: 19 sept. 2012 accepted: 23 dec. 2012 published: 11 july 2013 how to cite this article: hansen, a.w., chaki, a.p. & mlay, r., 2012, ‘occupational therapy synergy between comprehensive community based rehabilitation tanzania and heifer international to reduce poverty’, african journal of disability 2(1), art. #48, 7 pages. http://dx.doi.org/10.4102/ ajod.v2i1.48 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. occupational therapy synergy between comprehensive community based rehabilitation tanzania and heifer international to reduce poverty in this original research... open access • abstract • introduction    • background to the study    • the reality of poverty    • people with disability in tanzania    • community-based rehabilitation    • occupational therapy’s unique role    • creating synergy: pass on the gift project    • working together to create synergy • results of the project    • project challenges, perceptions and the future • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: this article describes a partnership between a community-based rehabilitation organisation and a non-governmental organisation (ngo) in tanzania. the partnership focused on income-generating (ig) activities to tackle the problems of poverty faced by families with a child with a disability (cwd). objectives: the aim of this case study was to describe the partnership between comprehensive community based rehabilitation tanzania in moshi (ccbrt-moshi), a non-governmental organisation, and families to create an income-generating business, namely raising goats. method: this was a team approach between ccbrt-moshi and heifer international, an organisation that focuses on ig activities to create a synergy or partnership between community-based rehabilitation and ig activities. results: this partnership between occupational therapy rehabilitation services at ccbrt-moshi and the ngo resulted in strengthening the effectiveness of occupational therapy services and leaving a more lasting impact on the people they served within the community by helping to reduce poverty in addition to providing rehabilitation and prevention interventions. conclusion: this collaboration was successful as it provided a means for families to generate income from raising goats. although the results have not been empirically verified, observational and anecdotal evidence suggests that families with cwds have better quality of life and ultimately improved health through this synergistic partnership. introduction top ↑ poverty and hunger are two major obstacles that occupational therapists face when working in community-based rehabilitation (cbr) programmes providing rehabilitation services and improving the quality of life for members of the community. the comprehensive community based rehabilitation tanzania in moshi (ccbrt-moshi), like many cbr programmes, is based in communities of people who are hungry and live in poverty. this poses a major obstacle in ensuring effectiveness of its services and sustainable community development because these families, and children in particular, face additional severe deprivations of clean water, health services, sanitation, shelter, education and access to information (unicef 2009). comprehensive community based rehabilitation tanzania programmes aim to empower people with disability and their families to assert their rights and make a contribution to their own livelihood activities through programmes that emphasise prevention of disability, access to economic empowerment activities, inclusion of children with disabilities (cwd) in mainstream schools and physical accessibility of facilities. this article describes a partnership between ccbrt-moshi and a non-governmental organisation (ngo) that focuses on income-generating (ig) activities to tackle the problems of poverty and hunger at a local level. the aim of the partnership is to work with the family to create an income-generating business, namely raising goats, to reduce poverty and thus hunger. poverty and hunger are major causes of disabilities and can lead to secondary disabilities for individuals who are already disabled as a result of poor living conditions, poor access to health care and education opportunities (world bank 2010). together, poverty and disability create a vicious cycle. opportunities for ig activities in poor and hunger-stricken communities are limited. comprehensive community based rehabilitation tanzania in moshi’s main focus has been on preventing impairments and disabilities, treating or curing disabilities, improving the physical condition of patients with disabilities and empowering those with disabilities and hiv to assert their rights and to make a contribution to their own livelihood (ccbrt 2012). comprehensive community based rehabilitation tanzania has not traditionally focused on ig activities. this case report describes a team approach between ccbrt-moshi and heifer international, an organisation that focuses on ig activities to create a synergy or partnership between cbr and ig activities. through this partnership, occupational therapy rehabilitation services at ccbrt-moshi has made a stronger and more lasting impact on the people they serve within the community by helping to reduce poverty and thus hunger in addition to rehabilitation and prevention interventions as mentioned above. this case study describes the first such collaboration between ccbrt staff, the family of a child with a disability, and an ngo that focuses on ig activities. background to the study tanzania is one of the 189 nations which endorsed the millennium development goals (mdgs) in september 2000 as part of the internationally agreed-upon development goals at the general assembly of the united nations (un 2008). the millennium development goals were established in september 2000, at the millennium summit, the largest gathering of world leaders in history. at this summit and through these goals, the participating nations committed to a new global partnership to reduce extreme poverty and set out a series of time-bound targets. these time-bound targets address extreme poverty in its many forms, including income poverty, hunger, disease, lack of adequate shelter and exclusion, while promoting gender equality, education and environmental sustainability (millennium project 2006). the goal of utmost importance in tanzania is mdg no. 1, to eradicate extreme poverty and hunger, as 57.8% of the tanzanian population is estimated to live under the poverty line of $1.00 per day (who 2011).poverty hits children hardest as it impacts their health and nutrition, education, participation, and protection from harm and exploitation, and thus creates an environment that is damaging to children’s development in every way – mental, physical, emotional and spiritual (unicef 2012). these complex issues challenge occupational therapists to think creatively about client-centred interventions that address more than just the child’s mental and physical needs. in practice, occupational therapists look at the child (or client of any age) as an occupational being, the contexts in which they live (family, home, school, work) and their meaningful occupations (activities of daily living, play, education, work) (watson & duncan 2010). when working with a child with a disability, the occupational therapist must look beyond the child, and explore the home and family context. an occupational therapist might ask, ‘does this child’s family have the ability to feed, clothe and educate their child?’ the population of tanzania is 43.2 million (tanzanian embassy 2012). more than 80% of the population is rural and 7.8% of the population ages 7 years and above have some type of disability or ‘activity limitation’ (ruyobya et al. 2008). this percentage is higher (8.3%) for people living in rural areas (ruyobya et al. 2008). the life expectancy is 53 years for men and 56 years for women, and more than 44% of tanzanians are younger than 15 years (who 2011). since its independence in 1961, the government of tanzania has placed poverty and hunger eradication at the top of its national agenda (un commission on sustainable development 1997). since 2005, for example, the tanzanian economy has been affected by daunting local and global challenges. one of these is a severe drought, which adversely affected crop production, livestock and power generation to proportions never experienced in recent decades. at the global level, the economy was negatively impacted by high oil and food prices and the global financial and economic crises (best-ac 2010). one of the proposed government intervention measures was the introduction and implementation of social and economic policies that address the issues of poverty and hunger both at national and individual level for more effective distribution and channelling of national resources to ensure greater access to resources and services for all its citizens. tanzania developed mkukuta (mpango wa kukuza na kuondoa umaskini tanzania) national strategy for poverty reduction in 2005 and is currently implementing mkukuta ii, which has the following objectives: • ensuring that good governance and accountability prevails in tanzania as a base for poverty reduction • ensuring timely and appropriate justice for all, especially the poor and vulnerable groups • reducing political and social exclusion and intolerance • ensuring sound economic management • ensuring adequate social protection and rights of the vulnerable and needy groups with basic needs and services • focusing on reducing child labour (best-ac 2010). these strategies are aimed at meeting two major targets to be achieved by the government of tanzania in eradicating poverty and hunger: • national target 1: between 1990 and 2015, reduce by half the proportion of people whose income is less than $1.00 a day • national target 2: between 1990 and 2015, reduce by half the proportion of people who suffer from hunger. tanzania’s ministry of finance and economic affairs reports that the country is ‘clearly on track to achieving the mdgs related to primary education, child mortality, gender equality, and access to improved sanitation, but is lagging behind in other mdgs’ (united nations developmental programme [undp] 2010). although the spread of hiv is the single most impoverishing force facing people and households in tanzania today, if not halted and reversed, it threatens not only the achievement of the targets in the poverty reduction strategies mkukuta and zanzibar strategy for growth and reduction of poverty (mkuza) but the mdgs more broadly (undp 2010). the country still faces huge challenges: ‘[e]conomic growth has been neither broad based nor robust enough to lead to a significant reduction in poverty, and indicators for social progress are less than impressive. as a result, the overall human development remains low, with a human development index of 0.398 in 2010, compared to 0.329 in 1990.’ (undp 2010) the reality of poverty agriculture is the leading sector in the tanzanian economy, accounting for nearly half of the gross domestic product. eighty-five per cent of the tanzanian population is involved in farming; it is estimated that there are 4.8 million smallholder farmers and nearly 3.9 million households keeping livestock (irish aid 2008). over 80% of poor tanzanians live in the rural areas. tanzanian agriculture is almost completely rain dependent. in years when rainfall is scant, thousands of tanzanians require food aid to ensure that they do not go hungry. farmers depend on water, their good health and being free of diseases or illness, yet drought and disease leave them vulnerable (irish aid 2008). additionally, due to poor governance, climate change and the increased frequency of droughts, agricultural production has not been enough to feed its population. the country has been importing between 4% and 10% of its food and receiving food aid to meet production shortfalls (irish aid 2008). therefore it is important to work with families, particularly families with a child with a disability, who depend on agriculture to make a better living, to find a more reliable source of income.although the majority of the population survives on agriculture and subsistence farming, the crops often fail or are of poor nutritional quality. this lack of proper farming knowledge and general poverty has led to poor nutrition amongst many tanzanian families (eds baker & pedersen 1992). pregnant women do not receive proper information on dietary requirements before, during and after delivery, resulting in low birth weights (who 2013a). research has shown that poor nutrition in pregnant women affects an unborn child’s development and can have adverse consequences on a child’s development (wu, imhoff-kunsch & webb girard 2012). malnutrition also has severe implications for a child’s learning capacity and growth. lack of knowledge and adequate nutrition are contributing factors in the increasing number of children with disabilities (who 2013a). tanzania’s national strategy for growth and reduction of poverty has pinpointed agricultural growth as one of the necessary components to reduce poverty (best-ac 2010). ‘agriculture first’ is now a leading campaign in the reduction of poverty and hunger (best-ac 2010) and presents an ideal policy framework within which to locate community-based rehabilitation initiatives such as the one described in this article. people with disability in tanzania the tanzania disability survey (ruyobya et al. 2008) was conducted by the national bureau of statistics (nbs) in collaboration with the office of the chief government statistician, zanzibar (ocgs) and the ministry of health and social welfare. this was the first time tanzania carried out such a comprehensive survey on people with disabilities. the survey was household based and covered both tanzania mainland and zanzibar. the major objective of the 2008 tanzania disability survey was to determine the prevalence of disability in the country. the survey also intended to determine living conditions amongst people with activity limitations. in the 2008 tanzania disability report, 25% of people with disabilities claimed that the physical environment or attitudes of others make it more difficult for them to take part in three complex activities (i.e. taking care of household activities, day-to-day work or schooling, and taking part in community activities). about 40% of people with disabilities reported having problems with accessibility to public transport.the accessibility of the physical environment largely determines the extent to which persons with disabilities function in an inclusive manner in their communities (ruyobya et al. 2008). generally about 8 out of every 10 people with disabilities in tanzania reported an accessible kitchen, living room and toilet, 9 out of 10 people reported to have access to the bedroom, and 6 out of 10 had access to the dining room (with 33% indicating that they do not have a dining room). people with physical and visual disabilities reported more difficulties with access compared with persons in other categories (ruyobya et al. 2008). approximately 1 in every 10 people in tanzania reported the following as inaccessible: work or school and shops or banks or post office ((ruyobya et al. 2008). about 2 in every 10 people reported their place of worship to be inaccessible. these rates were slightly higher than those reported in regard to the respondents’ homes. this suggests that places outside the home are inaccessible for people with disabilities. in addition, a number of people reported that they ‘never go’ to places outside of their homes. thirty per cent of all people with disabilities reported that the hospital or clinic was inaccessible. this high inaccessibility rate may be due to physical inaccessibility or lack of services owing to the distance involved (ruyobya et al. 2008). community-based rehabilitation the world health organization (who) describes community-based rehabilitation as ‘enhancing the quality of life for people with disabilities and their families, meeting basic needs and ensuring inclusion and participation’ (who 2013b). community-based rehabilitation was initiated in the mid-1980s but has evolved to become a multi-sectoral strategy that empowers persons with disabilities to access and benefit from education, employment, health and social services. community-based rehabilitation is implemented through the combined efforts of people with disabilities, their families, organisations and communities, relevant government and non-government health, education, vocational, social and other services (who 2013b). comprehensive community based rehabilitation tanzania in moshi is a cbr programme. the staff and administration decided to focus on ensuring better nutrition for mothers and children with a disability so as to help them improve their quality of life and prevent disabilities in unborn children (ccbrt 2012). the ccbrt-moshi programme is part of the larger ccbrt community programme, with its headquarters 439 kilometres away in dar es salaam, the largest city and commercial capital. the dar es salaam location serves a population of over two million people. ccbrt is the largest indigenous provider of disability and rehabilitation services in the country, providing quality rehabilitative services to 120 000 people with disabilities and their caregivers each year. comprehensive community based rehabilitation tanzania in moshi began its work in 1996 and covers 20 wards out of 31 in the moshi rural district (ccbrt 2012). the centre offers rehabilitation services for children with a disability or health conditions such as hydrocephalus and spina bifida, cerebral palsy, cleft lip and palate, and clubfoot. these and other health conditions create impairments that may lead to activity limitations, especially in rural environments where individuals face participation restrictions associated with physical and attitudinal barriers. the authors of the 2008 tanzania disability survey describe ‘disability’ in accordance with the united nations convention on the rights of persons with disabilities: ‘[p]ersons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal footing with others.’ (un 2006) this definition is in line with how the world health organization international classification of functioning, disability and health (icf) defines disability as the outcome of the interaction between a person’s health condition and the context in which the person lives (who 2013c). the cbr programme is one of the very few facilities in the kilimanjaro region providing quality comprehensive cbr services – as established through an external audit confirmed with objective data for children with disabilities (cwds) and their families in the community. all medical and rehabilitative interventions, including consultations and assessments, non-surgical treatment, therapy, training and special seating clinics, are performed at the rehabilitation centre, the house of hope, in moshi. occupational therapy’s unique role at the heart of the occupational therapy profession is a commitment ‘to advance certain core principles, one of which is the right of all people – including people with disabilities – to develop the capacity and power to construct their own destiny through occupation’ (wfot 2011). together with community rehabilitation workers (crws), occupational therapists and other health providers, therapists conduct visits to people’s homes and community day-care centres for therapeutic activities and rehabilitation follow-up services. all therapeutic and rehabilitation efforts by occupational therapists in collaboration with other team players are geared towards ensuring that children with disabilities are given an opportunity at full quality of life, and that they grow up to achieve their maximum potential. occupational therapy’s role in cbr at ccbrt had a particular focus on rehabilitation related to prevention, treatment and maintenance (watson 2004). the ccbrt staff found that hunger often jeopardises the success of therapeutic interventions of children with disabilities, such as self-care activities, and school attendance. for example, parents and caregivers often work far from home and do not have the time to follow through on the home exercise programme for their children when they return home from work, as much of their time is spent in meal preparation and caring for other family members. when an occupational therapist makes a follow-up home visit and finds the child alone and the parents and/or caregiver is away, the therapist is not allowed to work with the child due to child protection rights (ilo 2009). thus, the child does not participate in follow-up exercise or care from the parents or travelling therapist. this is an example of how poverty impacts family life and jeopardises the effectiveness of occupational therapy services. with insight in and commitment to the core principles of occupational therapy mentioned above, an occupational therapist on the ccbrt staff decided that finding ways to reduce hunger and poverty in families of children with disabilities could be crucial to ensuring success in all cbr services. in addition to its focus on rehabilitation in prevention, treatment and maintenance (watson 2004) this plan enhances ccbrt’s services by focusing on fulfilling one of ccbrt’s main organisational goals – that of supporting children and their families through the development of a plan to support nutrition and economic stability for the entire family. due to staff shortages, and more immediate rehabilitation needs of children who come to ccbrt for care, occupational therapists at ccbrt-moshi have not been trained to provide opportunities for income generating (ig) activities nor has this been a focus of ccbrt. however, ccbrt staff members realised that the work done by occupational therapists and other team members cannot be effective unless the issue of hunger is addressed. with an understanding that context and environment impact one’s daily occupations (eds kronenberg, pollard & sakellariou 2011; eds watson & schwartz 2004) the occupational therapists felt they could work with cwds and their families to develop skills and opportunities for income generation through partnering with organisations that focus on income generation as a poverty-reduction strategy. creating synergy: pass on the gift project this led to ccbrt-moshi partnering with heifer international, an organisation whose mission is to work with communities to end hunger and poverty and care for the earth (heifer international n.d. b). recognising the shared mandate and desire to fight poverty and hunger, one of the ccbrt occupational therapists developed a partnership with heifer international in 2008. through a partnership between the ccbrt staff, particularly the occupational therapist and heifer veterinary doctors, they developed a synergy to work together with families of children with disabilities to develop the ‘capacity and power to construct their own destiny through occupation’ (wfot 2012) by creating an income generating opportunity for the families.the occupational therapist and crws created a survey to identify 100 most poverty stricken families with cwds to be the first beneficiaries of heifer international’s pass on the gift project for orphans and vulnerable children (heifer international n.d. a). heifer international, through its veterinarians, provides education on the rearing of milk goats while other heifer specialists teach families how to generate income from the goats. the organisation also provides iron sheets and nails to the beneficiary families and helps with the construction of goats’ huts. the 100 families were divided into 4 groups of 25 families each, grouping neighbours or families living in close proximity to one another. each group then elected a leader as the key point of contact for heifer and ccbrt. each leader received training, which he or she passed on to the rest of the group, and was responsible for monitoring and reporting the progress of each family’s project. to ensure that the families owned the project, each family was asked to contribute building materials such as sand, stones and timber for completion of the huts. working together to create synergy occupational therapists, crws, veterinarians and local government leaders work together to supervise and ensure the smooth running of the project activities. each entity in the partnership shares a unique and an important role, working together to create a synergy that supports each other and the families in ensuring successful and timely construction of the goat huts and other aspects of the project. under the supervision of the occupational therapist, the crws design activities of daily living for children with a disability and teach parents how to guide their children in developing their skills in keeping and caring for their goat at home. these activities include cutting grass for their goat, grooming the goat, leading it to pasture, and providing water and food for the goat. even if a child is not able to fully participate in these activities, the crw under the direction of the occupational therapist adapts the environment and the activity in a way that the child can be integrated into an activity. for example, a child in a wheelchair can sit outside the house and keep watch on the goat, rather than sitting alone inside the house. the role of the veterinarian is to provide health services and appropriate knowledge to parents and children about how to take care of the goats in order to keep them healthy and strong. for example, the veterinarian explains how the goats need exercise every day, proper feeding techniques and how to prevent bloating. local government leaders and village health workers are also active members of this team. a government leader’s role is to identify new families within the community who have a child with a disability, to introduce them to ccbrt staff and to encourage families to become involved. village health workers, under the guidance of a crw, function on the village level and assist the crw. village health workers are trained to recognise a disability, guide the community rehabilitation committee on steps to help children with a disability attend school, adults with a disability obtain work and all people with a disability participate in community activities. whenever possible, their work is carried out in collaboration with representatives from education and social services. the occupational therapist understands the needs of the child and the family related to disability, including rehabilitation, social inclusion and participation. the occupational therapist assists the family in adapting their home and community environment to be functionally friendly for a child with a disability, including identifying key activities in which the child with a disability can participate, and helps them build their performance skills related to taking care of the goat, in addition to providing disability-related information. through these numerous activities, the occupational therapist is a unifying presence in the partnership. this creates a unique synergy between disability and poverty reduction by passing on to the families the gift of education and ig activities for poverty reduction. the family representative serves as the leader in all project activities at the family level. he or she is the key contact person for heifer and ccbrt. this becomes an authentic partnership between the families that creates its own synergy. for example, the family holds the responsibility to hand goats over to other families in the community. the aim of the project is to give families an opportunity to improve their income through production of goat’s milk. the families are also required to pass on the gift of the goat they have received by giving the first kid to another poverty-stricken family identified by the crws. the aim of ‘passing on the gift’ is to teach the initial family that they too have the ability to help another family improve their quality of life. in addition, fertile goats can be sold for $100.00 per goat. older female goats and surplus males can be slaughtered or sold for meat. male goats may be used to fertilise a neighbour’s goats, thus continuing the cycle of passing on the gift and lifting more families out of poverty. goat’s milk is rich in vitamin a and has proteins that are essential for the growth and development of cwds. the family can sell surplus milk at more than three times the price of cow’s milk. furthermore, goat’s milk can generate value-added products, such as cheese and yogurt. manure from the goats, which is high in nitrogen, can be used to improve the soil, thus leading to increased crop yields. it can also be used to produce biogas (produced naturally from cow, goat and other animal manure) for cooking and lighting. in addition, goats multiply quickly and can give birth twice a year, often producing twins or triplets. this increases the number of goats in a short period of time, leading to an increased number of beneficiary families. ccbrt-moshi and heifer international plan to invite an additional 100 beneficiaries to join the pass on the gift project every year. in five years, approximately 300 families will benefit from 50 new kids per year. results of the project top ↑ the results of this project in terms of poverty alleviation and hunger eradication have not yet been empirically verified. however, observational and anecdotal evidence suggests that families with cwds have better quality of life through improved income generation and ultimately improved health through this synergistic partnership. parents of cwds have more than the usual expenses of raising a child. in addition to school fees, which average 100 000 tzs or $62.00 a year, families with cwds often have to pay for doctor visits, surgery and hospitalisation costing over 1 500 000 tzs or $928.00 a year. ccbrt hopes that the outcome of this project will be to increase the number of cwds receiving appropriate health care and attending school because their parents have the funds to spend on these necessities. occupational and physical therapists on the ccbrt staff as well as the crw monitor control the services for income generation and the disabled children’s progress. since this programme is still unfolding, ccbrt staff and administration continue to fine-tune the collaboration to ensure that families benefit from this synergy while the cbr model moves closer to cbr guidelines. through this project, mothers with cwds are empowered financially to ensure the sustainable development of their families. the project aims to see a reduction in child mortality and the number of children born with a disability as a result of malnourished pregnant mothers and poor living conditions or lack of basic needs. comprehensive community based rehabilitation tanzania and the pass on the gift project are currently working on developing indicators to use as outcome measures to monitor the impact of this project on families and their children with disabilities. project challenges, perceptions and the future like any other project, this partnership faces many challenges. at family level, the first challenge is to help families and caregivers to recognise the potential of their child with a disability, to encourage them to take the time to allow their child to engage in meaningful activities each day. another challenge is to encourage families to alter their daily routines to include raising goats, and to change their livestock keeping practice to suit the needs of this new livestock that they have been given. another challenge is for families to build the goat huts in a more timely and efficient manner. families are building the goat huts very slowly. although one might think that rain or the lack of access to raw materials or family sickness is slowing down the building process, there seems to be another reason. the problem stems from the fact that ccbrt staff and heifer collaborators are trying to change the mindset of families. families are asked not only to accept the process of building a goat hut, but also to accept the fact that, in most cases, the goat huts are made of higher quality materials than their own houses and are thus sturdier structures. even the roofs of these goat huts are made of higher quality materials than their own houses – iron sheets, while the roofs of their homes are made of grasses or banana leaves. raising healthy goats is another challenge, as the goats are often infected with diseases that can lead to their death. one reason these diseases occur is because some goats are from a geographic region much different from their new area and their biological systems may have a difficult time adjusting to the different climate. mating seasons are different depending on the local climate, too. another challenge is families adapting to new goat-keeping practices versus the traditional way of keeping goats. some deaths result from failure of veterinarians to give follow-up care and monitor progress. for the most part, educating families and continuously encouraging them can help the project overcome these challenges. at an institutional level, another challenge is the bureaucracy and rampant corruption. for example, most of these veterinarians are employed by the government and seconded to the heifer projects. it is difficult to control their activities and supervise their work because they have other government projects that they are supervising. veterinarians have a heavy workload and having to oversee government projects and other existing heifer projects makes it difficult for them to focus on this special project, although they are being paid for their participation and work. this challenge is not so easily addressed because they are government employees. this creates tension with the partnership, as the veterinarian plays an important role in creating synergy within this partnership. conclusion top ↑ through this project, the authors have come to an important realisation that has changed the way they see the issue of poverty and hunger. they believe that one’s life perspective and ultimately the condition of one’s spirit are key issues related to poverty and hunger. however, the challenges of hunger and poverty may be reduced and even overcome when an interdisciplinary, thoughtful, committed group of cbr professionals, an ig organisation, local government officials and families work together to create solutions that are centred on the client and the family. these solutions not only draw out the talents of all involved, including children with disabilities, but also lift up and build upon each person’s human capabilities in a synergy that is life-promoting, life-saving and life-giving for all. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this article. authors’ contributions a.m.h. (duquesne university pittsburgh) conducted the research to support this work. a.c. (ccbrt-moshi) organised and carried out this partnership and created the original proposal for manuscript. r.m. (ccbrt-moshi) supervised the ccbrt collaboration. a.m.h. drafted most of this case study report with input from all authors. references top ↑ baker, j. & pedersen, p.o. 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accepted: 26 nov. 2020; published: 08 mar. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: research has shown that all children and adolescents have the right to participate in their everyday life. however, little is known about what impacts the participation of children and adolescents with disabilities living in low-and middle-income countries. objective: the present study undertakes a scoping review of research to synthesise the current literature about barriers and facilitators to participation in everyday life for children and adolescents with disabilities living in lowand middle-income countries. method: a scoping review was conducted. the databases psyc info, medline, cinahl, pubmed, eric and african wide information were searched for studies published between 2001 and april 2018. data was analysed using deductive content analysis. the barriers and facilitators to participation were categorised into personal factors, social factors, environmental factors, and policy and programme factors. result: in the end, 17 articles were included for data extraction as they mentioned barriers and facilitators to participation for children and adolescents with disabilities. most of the reviewed studies reported on barriers to participation. only one of the studies was performed in a country classified as a low-income country; all other studies were performed in middle-income countries. the results indicate that some factors, especially social factors, could be perceived as both facilitators and barriers to participation. conclusion: there is a lack of studies describing barriers and facilitators in lowand middleincome countries. barriers and facilitators in proximity to the child and family are most frequently described in the literature. keywords: adolescents; child; disabilities; barriers; facilitators; participation; lowand middleincome countries. introduction children and adolescents with disabilities are considered to be a vulnerable population group and as a result require special support and protection (brown & guralnick 2012). the united nations convention on the rights of the child (crc) is one of several international treaties in which children’s rights are embedded. according to the crc, all children and adolescents have the right to participation and children’s and adolescent’s own views are considered fundamental. the global burden of disease report estimated that over 100 million children under the age of 15 years had a moderate or severe disability (mathers, fat & boerma 2004). the majority of children and adolescents with disabilities live in lowand middle-income countries (lmics). however, the prevalence of children with disabilities is difficult to determine as the prevalence depends on the assessment of the disability. in recent years, the influence that the environment has on people with disabilities and their lives has been emphasised in conceptual frameworks such as the world health organization’s (who) the international classification of functioning, disability and health (icf) and child and youth version (icf-cy: who, 2007). participation is described in the icf as the involvement in a life situation (who, 2007). involvement in life situations includes the domains of learning and applying knowledge, communication, home life, school life, social life, relationships, leisure and recreation (maxwell, alves & granlund 2012). as the icf is based on an ecological model of child development and a biopsychosocial perspective, it acknowledges the situational nature of participation, with the environment viewed as a key influencing factor (anaby et al. 2014). participation restrictions could appear as a result of the dynamic interaction amongst health conditions, the environment and the person (united nations, 2007). participating in activities of daily life, including both formal and informal leisure activities, is essential for the physical and psychological development of children and adolescents. to take part in activities in the society with other children and adolescents, it is important for children and adolescents with disabilities to grow as individuals and to enjoy life (anaby et al. 2014; engel-yeger et al. 2009). children and adolescents with disabilities tend to engage in activities, especially outside the family, to a lesser extent than their peers without disabilities (almqvist & granlund 2005). from this evidence, it is clear that children and adolescents with disabilities may experience barriers to participation that need to be identified (brown & guralnick 2012). in a systematic review by shields, synnot and barr (2012) that focused on the perceived barriers and facilitators to participation in physical activities for children and adolescents with a disability, they found that the barriers to participation tended to be studied more often than facilitators. some of the barriers included a lack of knowledge and skills, personal preferences, fear and stigma associated with being disabled, behaviour of parents, infrastructure and programme challenges (lack of transport, facilities, staffing), as well as financial challenges (shields et al. 2012). on the other hand, facilitators account for the child’s desire to be active and to practise their skills, peer involvement, a supportive family; accessibility to suitable infrastructure, geographic location and information, as well as suitably skilled staff who were able to support participation (shields et al. 2012). the barriers and facilitators in the shields et al. (2012) review were categorised into four categories, namely personal, social, environmental and policy and programmes. qualitative differences between the perspectives of children or adolescents and caregivers were also noted, with children and adolescents focusing on personal factors rather than familial, social or policy and programme factors like their parents (shields et al. 2012). it is unclear whether these factors that affect participation of children and adolescents with disabilities would be similar in low and middle-income contexts as most of the studies included in the shields et al.’s (2012) article were mainly from high-income contexts. because the icf readily acknowledges that participation is influenced by context (maxwell et al. 2012), it is important that we also understand the factors enabling or preventing the participation of children and adolescents with disabilities in lmics. rationale children and adolescents need to participate in activities of daily life which is important for their physical and psychological development (anaby et al. 2014; engel-yeger et al. 2009). children and adolescents with disabilities are likely to be less engaged in activities, especially outside the family, compared to typical developed children and adolescents (almqvist & granlund 2005). this means that participation restrictions could be identified for children and adolescents with disabilities. therefore, it is a need for identification of barriers and facilitators for participation in order to enhance participation for these children and adolescents (brown & guralnick 2012). methods a scoping review is one of several types of reviews that have been identified by grant and booth (2009), and this is the preferred methodology to be able to map literature on a specific research area, especially when there is a paucity of research in an area. a scoping review is differentiated from a literature review because of the degree of a systematic review in the search. yet, it does not involve any appraisal of the research evidence as required by a systematic review or meta-analysis (grant & booth 2009). in addition, a scoping review usually does not include an appraisal of the quality of the studies and is generally used when there is limited research in a field (munn et al. 2018). a scoping review involves several steps (arksey & o’malley 2005) namely, (1) identifying the research question (2) access to relevant studies (3) selection of studies for detailed analyses (4) analysis of data based on the criteria made by the authors (5) organising and summarising the findings and (6) consultations (which was not done in this study). objectives the present study undertakes a scoping review of research to synthesise the current literature about barriers and facilitators to participation in everyday life for children and adolescents with disabilities living in lmics. the barriers and facilitators are discussed relating to personal, social, environmental and policy and programme factors (shields et al. 2012). the scoping review adheres to the population, concept and context (pcc) format (schlebusch et al. 2020) with the population referred to children and adolescents with disabilities (up to age 21 years), concept of participation and its family of related constructs (imms et al. 2017) and context lmics. throughout this study, the concept of children and adolescents (up to age 21 years) will be used consistently except for some sentence where children and youth, or young people (0 – 21 years) are used interchangeably. in this study, the 2016 criteria for gross national income according to the atlas method were used. that is an indicator of income that was developed by the world bank. low-income economies are countries with a gross national income per capita of us$1025 or less; lower, middle-income economies are countries with a gross national income per capita between us$1026 and us$4035; upper, middle-income economies are countries with a gross national income per capita between us$4036 and us$12 475, and high-income economies are those with a gross national income per capita of us$ 12 476 or more (world bank 2016). the population of focus was children and young people (0 – 21 years old) with disabilities and long-term health condition living in lmics. disability was defined according to the convention on the rights of persons with disabilities, article 1 as ‘long-term physical, mental, intellectual or sensory impairments that, in interaction with various attitudinal and environmental barriers, hinder full and effective participation in society on an equal basis with others’ (united nations 2007). the concept of participation is defined by the icf for children and youth as involvement in a life situation (who, 2007). participation has, according to imms et al. (2016) two essential components: attendance which is described as ‘being there’ and measured as frequency of attending, and/or the range or diversity of activities, and involvement, the experience of participation whilst attending. therefore, participation can be defined as attending and being involved in life situations (imms et al. 2017). protocol and eligibility criteria this study forms part of a larger study about the participation of children and adolescents with disabilities and/or chronic health conditions, living in lmics (schlebusch et al. 2020). the scoping review followed the pcc format. in the study of schlebusch et al. (2020), a scoping review plan to set parameters for search, screening, extraction and analysis was developed and used. the structure of the study is based on preferred reporting items for systematic reviews and meta-analyses (prisma: tricco et al. 2018). the current study used the data sets from a larger scoping review that schlebusch et al. (2020) conducted to identify articles that focus on barriers and facilitators to participation of people with disabilities or long-term health conditions in lami countries. these articles were further screened to focus on those that reported on barriers and facilitators for participation. information sources to be able to find the most relevant articles, search terms were identified through ongoing discussions with the expert panels and in consultation with a health science information specialist to ensure the most relevant yield of articles. a search strategy of combined concepts of interest was applied, using boolean logic queries: concept a (children and young people) ‘and’ concept b (disability, long-term health condition) ‘and’ concept c (participation) ‘and’ concept d (lamics). only studies published since june 2001 and before march 2018 were included. the start day of june 2001 was chosen because that was when the icf was officially endorsed by all 191 member states of the who. even if no language restrictions were applied in the search strategy, only studies published in english were included. six databases were used for the search: psycinfo, medline, cinahl, pubmed, eric and africa wide information. the first electronic search was conducted in december 2016 and an update was done in april 2018 to identify articles meeting the inclusion criteria. the inclusion criteria for schlebusch et al. (2020) were: (1) studies including children and adolescents (0 – 21 years old); (2) with disabilities and or long-term health conditions; (3) studies conducted in countries identified as lmics by the world bank; (4) studies published in the english language and, for this current paper an additional criterion was added namely, (5) studies describing barriers or facilitators for participation. selection of sources and evidence for the study at hand, the total of 74 studies that were included in the review by schlebusch et al. (2020) was then reviewed for a second time based on the inclusion criteria stated above. four reviewers (authors) independently reviewed the studies, until 100% agreement between the authors was reached. amongst the total of 74 studies that were reviewed, 56 were excluded as they did not report data on barriers and facilitators to participation and one was excluded as the same data was used in two different publications. in total, 17 studies that described barriers and facilitators for participation were included (figure 1). the studies were published between 2009 until 2018. in the study by mcconkey et al. 2013 the data collection was done in several countries, of which two countries are lmics countries, the remaining studies are done in lmics countries (table 1). figure 1: prisma flow diagram. table 1: table of included studies. synthesis of results specific information relating to the barriers and facilitators was extracted and analysed by two independent reviewers using deductive content analysis, as this is often used when retesting existing data in a new context (elo & kyngäs 2008). the analysis in this study was on the four a priori themes identified by shields et al. (2012), namely personal, social, environmental, and policy and programmes. the coding of the data into the categories in the shields et al. (2012) frameworks was performed by the first and last author, respectively. discrepancies in the allocation of the codes were discussed until 100% agreement was reached. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. findings selection and sources of evidence in total, 17 studies were included in this research (see figure 1). the findings are categorised into barriers and facilitators, and these parts are further categorised into personal, social, environmental, and policy and programmes (shields et al. 2012). these 17 studies are described in table 1, which include the authors, year of publication, title, aim, study population and country of origin for each study, method and the barriers and facilitators of each study. characteristics of sources of evidence and results of individual sources of evidence barriers to participation in everyday life a total of 15 studies reported barriers to participation in everyday life of children and adolescents with disabilities in low and middle incomes countries (bantjes et al. 2015a, 2015b; columna et al. 2015; conchar et al. 2016; du et al. 2016; frantz et al. 2011; glumac et al. 2009; hansen, siame & van der veen 2014; hui et al. 2018; mcconkey et al. 2013; memari et al. 2015; mizunoya, mitra & yamasaki 2018; mudyahoto & dakwa 2012; nelson et al. 2017; vosloo 2009). from these 15 studies, 5 reported personal barriers, 8 on social barriers, 13 on environmental barriers and 3 on policy and programme barriers. personal barriers: personal barriers included the children’s and the adolescents’ perceptions of their ability, the children and adolescents experienced limitation in body-function hindering their involvement in different activities. the children and adolescents also described fear of getting injured when participating in different activities (bantjes et al. 2015b; columna et al. 2015; conchar et al. 2016; frantz et al. 2011). the children and adolescents experienced negative emotions with regard to the physical limitations of their bodies, feeling uncomfortable and vulnerable; lacking in sporting spirit. some children and adolescents did not want to be watched by others whilst participating in physical activities (conchar et al. 2016). the children and adolescents were disappointed if they were excluded, felt embarrassed and ashamed at appearing physically inept. the children’s and adolescents’ own intrinsic motivation was also mentioned as a barrier for participation (frantz et al. 2011; memari et al. 2015). social barriers: social barriers were described as hindrances in the children’s and adolescents’ social lives that prevented them from participating in everyday life. barriers were reported to occur within the family: some children and adolescents said that they did not feel loved and supported by their immediate family. it could be because mothers found it difficult to deal with a child or adolescent with a disability, and thus the child or adolescent did not receive any assistance from home. in some cases, the father did not feel comfortable when the child or adolescent participated in the family activities (bantjes et al. 2015b; frantz et al. 2011; hansen et al. 2014; hui et al. 2018; mizunoya et al. 2018; nelson et al. 2017). children and adolescents reported lacking bonds of friendship in their peer networks and were sometimes bullied or were targets of verbal insults in place of friendship. some children and adolescents were also harassed by others when participating in physical activities (bantjes et al. 2015a). on a more general level, some felt that they were regarded as slow and incompetent, and other people made decisions on what they as persons with disabilities should do (mcconkey et al. 2013). concerning the service systems there was a lack of support and care from medical professionals (nelson et al. 2017). environmental barriers: environmental barriers were described as the lack of opportunities and resources within the environment, or the lack of activities for children and adolescents with disabilities to choose from. for example, it could be physical activities that were not adapted to take into account persons with disabilities (bantjes et al. 2015a). the studies also described a lack of teachers’ knowledge; they did not have any special training in taking care of children and adolescents with disabilities and therefore, many of the school activities were not available to children and adolescents with disabilities (mizunoya et al. 2018; mudyahoto & dakwa 2012). children and adolescents with disabilities were also excluded from physical activities in school relating to sports and health classes because of lack of suitable equipment and because there were not enough children and adolescents with a similar disability to form a team. furthermore, there were no schools available in close proximity, which made it impossible for such children and adolescents to attend school (bantjes et al. 2015a, 2015b; conchar et al. 2016; frantz et al. 2011; hui et al. 2018; mizunoya et al. 2018). barriers in the environment were described as inadequate public transport, poor roads and infrastructure, a busy traffic system and the lack of ramps for wheelchairs. a barrier to accessibility could also be that the students had to take a certain form of transportation home at a fixed time leading to an inability to attend school-based sports activities for the children and adolescents, even if they were available to (conchar et al. 2016; glumac et al. 2009; hansen et al. 2014). instances where a school did not have space to accommodate additional sport facilities, and had problems accommodating children and adolescents with disability were also cited as barriers (bantjes et al. 2015b; conchar et al. 2016; hansen et al. 2014; vosloo 2009). another reported barrier was that the children and adolescents with a disability were not accepted by others in the community, the school or in their own family. other people’s attitudes against children and adolescents with disabilities were negative. the studies reported that sometimes peers did not treat children and adolescents with disabilities as equals, or simply did not accept the children and adolescents with disability. sometimes they even hit the children and adolescents with disabilities (mizunoya et al. 2018; vosloo 2009). some findings alluded that teachers in schools maintained that children and adolescents with disabilities should not take up space for other children and adolescents with a brighter future, and refused to allow a child with a disability into the classroom because they perceived that there was a lack of equipment and lack of knowledge about how to assist children and adolescents with disabilities (hansen et al. 2014). the children and adolescents with disabilities were also poorly treated (bullied) by some teachers (hansen et al. 2014; mudyahoto & dakwa 2012). a barrier for children and adolescents with disabilities was that the environment was not adapted to the children’s and adolescents’ needs: for example, an uneven playground (conchar et al. 2016). the structure of the school day was another barrier because there were no adaptations at the schools to support children and adolescents with disabilities (bantjes et al. 2015a; conchar et al. 2016; mudyahoto & dakwa 2012). there was also a lack of adapted activities, and those that were adapted were oversimplified and not challenging enough (bantjes et al. 2015a). another problem was that the communication style did not adapt to the needs of the children and adolescents with a disability: the of inability to communicate in sign language rendered a situation where the other children and adolescents were not able to communicate (conchar et al. 2016; vosloo 2009). financial burdens for the family were a constraint as they needed to care for the children and adolescents at home who were unable to earn money (hansen et al. 2014). it was also expensive to care for a child or adolescent with a disability, and the families often lacked resources to buy proper equipment and hire specialised staff (bantjes et al. 2015b; columna et al. 2015). it could also be a financial burden on the family to send the children or adolescents to school, as they could not pay school fees (memari et al. 2015). policy and programme barriers: findings from this review highlighted that there were insufficient policies in place. one example was an inclusion policy that allowed children and adolescents with disabilities to attend mainstream school without the policy stating any requirements for the school to make adjustments needed for equal participation for all children and adolescents (vosloo 2009). another study reported on barriers associated with the transportation between school and home (bantjes et al. 2015a). the policy said that the transport should leave just after school finished, which made it impossible for adolescents with cerebral palsy (cp) to take part in extramural activities that other children and adolescents could enjoy (bantjes et al. 2015a). one of the responses also reported a classification system that stratified athletes with similar disabilities into groups, which made the groups too small to compete, along with the lack of space to accommodate additional sporting facilities (bantjes et al. 2015b). facilitators for participation in everyday life in this review, 12 studies reported on facilitators for participation in everyday life of children and adolescents with disabilities in lmics (bantjes et al. 2015a; bunning et al. 2014; columna et al. 2015; conchar et al. 2016; cuhadar & diken 2011; du et al. 2016; frantz et al. 2011; glumac et al. 2009; hansen et al. 2014; hui et al. 2018; mcconkey et al. 2013; nelson et al. 2017). from these 12 studies, 2 reported on personal facilitators, 6 on social facilitators and 9 on environmental facilitators. personal facilitators personal facilitators for children’s and adolescents’ participation in everyday life included positive emotions, such as positive perception of the body and body function. it could be factors that improved involvement in physical activity and wanting to control and regulate their body shape and mass. one way of avoiding uncomfortable feelings and maintaining a healthy body was by mastering a physical activity (conchar et al. 2016). the children and adolescents gained more self-confidence when they had fun and enjoyed themselves. another facilitator was their experience on learning a new skill (frantz et al. 2011). social facilitators the immediate family could be a facilitator in different ways: for example, if the family had a positive attitude towards the children and adolescents (du et al. 2016) and the family provided love and support that encouraged the children and adolescents to be active. the children also mentioned that expressions of interest from the family about the children’s and adolescents’ participation in activities inspired them and wished that other people would do the same. it was also important for the children and adolescents to build alliances with their parents (bunning et al. 2014; frantz et al. 2011; mcconkey et al. 2013; nelson et al. 2017). having friends was another facilitator. to make new friends who had the positive attitude was important. the children and adolescents felt supported and cared for by their friends, and the friends treated them as equals (conchar et al. 2016; du et al. 2016; frantz et al. 2011; mcconkey et al. 2013). also, support and care from people such as medical professionals was important, along with the opportunities provided to these children and adolescents to participate in various activities. different augmentative and alternative communication methods could help children and adolescents to participate in social activities (du et al. 2016; frantz et al. 2011). another facilitator was a positive attitude to the children and adolescents with disability from the general population and the health-care professionals. it is important to build alliances with mainstream schools and for the teachers to have a positive attitude (mcconkey et al. 2013). it is important that coaches worked towards building alliances with sports organisations working with both children and adolescents with disabilities. improving the ability to move without assistance from others was also important (conchar et al. 2016). environmental facilitators factors that facilitated availability were dependent on careful planning specific to children and adolescents with disabilities (columna et al. 2015; conchar et al. 2016). for example, practical support in the care of children from sources outside of the family made it possible for the children and adolescents to participate in school (nelson et al. 2017). the photographic scheduler and the teaching process were effective in improving the activity skills of the children and adolescents (cuhadar & diken 2011). team sports with the option to work in groups facilitated participation for children and adolescents with disabilities (bantjes et al. 2015a). it was important to have access to suitable facilities in an atmosphere of inclusivity (mcconkey et al. 2013). one example would be the access to wheelchairs which made the children and adolescents more independent (glumac et al. 2009). the importance of a supportive environment where the children and adolescents felt that they were helped, and that the children and adolescents were accepted by family members, friends and staff had an impact. friends should not only help them but also be a guide to them (hui et al. 2018). it is also important to be accepted by the community and neighbours (bantjes et al. 2015a). being a resourceful mother will have an impact on how well accepted the children and adolescents are (hansen et al. 2014). careful planning specific to the children and adolescents to ensure that the environment was adapted for the children’s and adolescent’s disability was also important. one example would be when the parents call ahead to ensure that the track they want to take is accessible for a child with visual impairment whilst planning a family trip to the forest (columna et al. 2015). the external financial aid that the families obtained, such as wheelchairs or economic support made it possible for the children and adolescents to participate (nelson et al. 2017). discussion participation in everyday activities by children and adolescents with disabilities is classified as a fundamental right according to the crc (united nations 1989; viviers & lombard 2013). the qualitative findings from this literature review indicate that barriers to participation are more frequently reported than facilitators in lmics. in addition, the findings indicate that some factors, especially social factors can be perceived as both facilitators as well as barriers. the most frequently mentioned barriers were social barriers. such barriers included children not being accepted as they were and the prejudices of others in not wanting them to participate. in an article by huus et al. (2016) about how primary caregivers in a low-income setting perceived children’s rights, it was found that participation was the least commonly mentioned right by the primary caregivers. however, whether the same pattern can be seen in high-income settings needs to be investigated. the finding that social barriers are most frequently mentioned is probably universal, independent of socioeconomic standards in the country of study. rather than indicating a qualitatively different pattern in lmic countries, the findings confirm earlier studies in high-income settings (law et al. 2007). social barriers were found in the everyday activities of children and adolescents with disabilities in their immediate family, amongst the children’s and adolescents’ friends, and by professionals. most often it was the attitudes of others that influenced whether the children and adolescents with disabilities participated or not. so even if the children and adolescents were in attendance, they were not actively involved (or participated) in the activity (bantjes et al. 2015b; frantz et al. 2011). often, people around the child and adolescent were not aware of the children’s rights under the un convention. some people had a perception that the children could not participate and they found it difficult to conceive what kind of changes were needed to make it possible for the children and adolescents with disability to participate. an example of a factor described as both a facilitator and a barrier is in the attitudes of family and friends. it is encouraging when children and adolescents with disabilities experienced the family support in enabling them to participate, and friends treated them as equal partners. the opposite was when there was a lack of encouragement for participation of children and adolescents with disabilities from family and friends. only barriers were reported in the policy and programme category. this is contradictory to shields et al. (2012) where the majority of barriers and facilitators towards participation of children and adolescents with disabilities were found under policy and programmes. one aspect that appears in this study as a barrier was the inclusion policy that allowed children and adolescents with disabilities to attend mainstream schools, without making adjustments needed for equal participation of all children. in a swedish study by olsson et al. (2020) (high-income country) it was found that when children and adolescents with disabilities were integrated into mainstream schools, they were less likely to receive disability-related services from rehabilitation services. the teachers in mainstream schools did not know about available services and could not help the primary caregivers in contacting the concerned authorities. another policy and programme barrier described was problems with transportation between the school and home. this is also shown in a literature review by lygnegård et al. (2013) focusing on the needs of children with disabilities living in poverty-ridden settings. this review also showed that transportation is a common issue; particularly how it is organised. participation in sport at an early age is good for the children’s and adolescents’ development, fostering a healthy lifestyle. the benefits of an active lifestyle could improve feelings of inclusion and the children’s and adolescents’ self -esteem (wilson & clayton 2010). children and adolescents with disabilities also need to have physical activity for the same reasons. however, in this study physical activity was something that troubled the children and adolescents with disabilities because they were often divided into groups depending on the kind of disability they had, and when the groups were too small to constitute a complete team their participation was denied (wilson & clayton 2010). the question arises whether the teams must compulsorily have the same numbers of players. the inclusiveness of the team may be more important than the size, as described by the children and adolescents in a study by spencer cavaliere and watkinson (2010). the children and adolescents indicated that they would feel more inclined to engage in a physical activity if features relating to gaining entry like any other legitimate participant were provided and also, having friends (spencer-cavaliere & watkinson 2010). limitations of the study and directions for future research there are notable limitations of this scoping review: the inclusion criteria of peer-reviewed articles are a potential publication bias. it is more likely that significant results are published than non-significant or negative results. in this study, an overview of the material is presented (schlebusch et al. 2020). a lot of studies describe participation, but only a few describe barriers and facilitators for participation of children and adolescents with disabilities. barriers and facilities for participation are often briefly described in an article, and there are almost no studies focusing particularly on this subject. few studies were conducted in low income countries with most studies being performed in middleor high-income countries. it is important that future research focuses on barriers and facilitators in low-income countries in order to map the requirements and to tailor the interventions to enhance the participation of children and adolescents with disabilities. conclusion there is a lack of studies describing barriers and facilitators to the participation of children and adolescents with disabilities in lmic. the findings from the current study indicate that barriers are more frequently described, and they are also described in more depth. barriers and facilitators in the proximity of the child or adolescents and the family, as within the categories of personal and social barriers and facilitators are most frequently described. in contrast to the studies in high income countries, barriers to policy and programmes, more distant to the child or adolescents and the family, were less frequently described. acknowledgements the authors would like to thank the participants in the expert panel who attended various research workshops held in 2016, 2017 and 2018. the authors also want to thank ms gunilla brushammar, librarian at jönköping university for valuable guidance. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions k.h. and s.d. where responsible for conceptualisation, methodology, funding acquisition, data curation and formal analysis of the study. l.s. and i.g.b. contributed to the data curation and formal analysis. k.h., s.d., l.s., i.g.b, m.r., a.s. all contributed towards the writing of the original draft, reviewing, and editing thereof. funding information funding was received from the south african national foundation (nfr) 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https://blogs.worldbank.org/opendata/new-country-classifications-2016. world health organization, 2007, international classification of functioning, disability, and health: children & youth version: icf-cy, world health organization, geneva. acknowledgements references about the author(s) maria c. marchetti-mercer department of psychology, school of human and community development, faculty of humanities, university of the witwatersrand, johannesburg, south africa citation marchetti-mercer, m.c., 2025, ‘invisible barriers: examining the role of disability in transnational families’, african journal of disability 14(0), a1679. https://doi.org/10.4102/ajod.v14i0.1679 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper invisible barriers: examining the role of disability in transnational families maria c. marchetti-mercer received: 06 feb. 2025; accepted: 30 aug. 2025; published: 30 nov. 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. many narratives have shaped the course of my life. however, two seemingly unrelated ones strongly influenced my professional and personal lives in the last two decades: migration and running. i emigrated from italy as a child. when i returned to italy to pursue my family therapy training in the early 2000s, i saw work on migrant families in parts of rome. i then realised that the systemic impact of migration, especially emigration, on south african families needed to be explored, and this steered the direction of my research since then. a few years earlier, i had begun jogging around the block in an attempt to deal with the stress of completing a doctor of philosophy (phd). over the years, as my fitness improved, i participated in ultramarathons, finally obtaining a ‘green number’ for completing more than 10 comrades marathons. running became a big part of my life – the time pounding the road became a space in which i conceptualised many of my research plans. my shift into migration research was primarily self-driven. my phd at the milan school of family therapy left me well versed in systemic theory, but i was by no means a scholar of migration theory. my most relevant point of reference was my own personal story of migration as a child. i was not part of a research team where i was mentored into the seminal works of significant figures in the field, so i read the works of family therapists working with migrant families, such as carlos sluzki and celia falicov. eventually, i encountered the work of anthropologist and sociologist loretta baldassar, whose extensive research on transnational families has had a strong impact on my thinking. as i interviewed members of migrant families, i identified critical gaps in the field, such as the experiences of loss by older adults left behind by their migrant children and their challenges trying to stay in touch with children and grandchildren living abroad (marchetti-mercer 2012). it soon became clear that when adult children migrated, the burden of care of elderly parents was passed on exclusively to siblings or other family members left behind in the source country. by this time, i had met leslie swartz, who served on a panel for a review of the university of pretoria’s department of psychology (which i headed at the time), and i was struck by his kindness and deep insights. during this period, we started discussing issues of care. through our conversations, my thinking on the meaning of ‘care’ expanded and deepened, especially concerning the elderly. leslie had already carried out extensive work on the topic and was dealing with it in his personal life, as he was intensely involved in the care of his mother. those experiences led to his profoundly moving memoir how i lost my mother (swartz 2021), which highlights with immense empathy the exacting care required and the intense experiences of those caring for the elderly. his work also showed deep insight into family dynamics, which influenced my next research study, on the care processes around elderly parents left behind by migrant children (marchetti-mercer & swartz 2020; marchetti-mercer et al. 2020). it was then that leslie and i started formally working and writing together. i have many memories of these encounters, often sitting in his purple kitchen or in a coffee shop in cape town or johannesburg. working closely with leslie, one cannot but be struck by his enormously wide-ranging intellect, fuelled by extensive reading, and his ability to write flawlessly, as well as his generous spirit. this translates into an ongoing process of encouragement for those with whom he works. he always made me feel as though my ideas were brilliant, even when they were clumsily formulated and needed much refining. in the highly competitive world of academia, it is rare to meet someone of his calibre who is genuinely modest and who is not threatened by those with whom he works or mentors and instead cheers their successes. it was mostly because of this intellectual support that my research was able to grow. coming back to our research projects, two events profoundly shaped my understanding of the experience of disability. the first was my encounter in sydney with a migrant who is deaf and suffers from other impairments. i interviewed her as part of the care study. the second event was a bad fall and a meniscus operation, which incapacitated me for several months and has had a long-term impact on my running. while i attended an academic conference in sydney in 2017, i had an opportunity to interview the daughter of a woman i had previously interviewed in johannesburg. the interviewee in johannesburg had three daughters – one in cape town and two in sydney. emma, in sydney, was born with waardenburg syndrome, which resulted in deafness, visual impairment and a pigmentation deficiency similar to albinism. we met at the conference hotel. she arrived with a sign language interpreter who was part of the free support available to her as a person with a disability in australia. her life had improved significantly because she lived in australia, where government support is available. she encountered difficulties when she went back to south africa, where she was entirely dependent on her family to fulfil many activities of daily living because of the lack of support available there for deaf people. in australia, she could pursue a high-flying career, since all the necessary technological support was provided to her in the workplace. when she returned to south africa, she felt ‘disabled’. until that stage in my career as a clinical psychologist, i had given little thought to the experience of disability and had not received any training in this area. this reflects a significant gap in the professional training of psychologists in south africa, also noted by harvey and swartz (2024). the discussion i had with emma around her experiences of disability in south africa led to more conversations with leslie and a joint article for disability studies, entitled ‘disabling africa: the power of depiction and the benefits of discomfort’ (swartz & marchetti-mercer 2017). it is worth noting that emma’s perspective was that of a migrant from a privileged background whose quality of life had improved after relocation. it did not yet represent the experiences of most migrants in the global south. disability can take many forms. i was personally unfamiliar with the embodied experience of my body not functioning as it used to. however, this was soon to change. in their discussion on the lack of inclusion of disability studies in south african psychology, harvey and swartz (2024) remind us that: … after all, it is the one minority group which we could all become a part of without our control – anyone could develop a disability via an illness, accident, or ageing. acquired disability is a very real reality. (p. 534) in july 2017, soon after returning from australia, i tripped on an uneven pavement while running and tore my meniscus. i had to undergo surgery and to use crutches for weeks to move around and intensive rehabilitation. i relied extensively on others for many tasks, was unable to drive and found mobility frustrating and challenging. psychologically, this was extremely difficult for someone accustomed to running every morning, driving to work and standing for hours to lecture. both my professional and personal lives were suddenly greatly restricted. i vividly recall feeling deeply embarrassed while hobbling around on crutches – awkward, slow and acutely aware of people’s irritation as i navigated shops or the university campus. i wanted to hide away, uncomfortable with the perceived pity, which made me feel different and no longer ‘normal’. i experienced practical frustrations such as discovering that the elevators up to my office were far from the entrance and often out of order. i remember losing my temper the first time i entered the disabled bathroom in the psychology clinic; it was pitch dark, and no one had even noticed that the light bulb did not work. how does a person with limited mobility navigate such a dark space? i quickly discovered that the so-called ‘wheelchair’ ramps in many campus buildings were extremely steep and challenging to negotiate on crutches, let alone in a wheelchair. my experience was, of course, time limited and nothing like that of people who struggle with a permanent physical disability. eventually, i was able to walk without crutches and even started running again. nevertheless, this period had a profound impact on me – it gave me a glimpse into what it means to navigate a world where there is little recognition or respect for those who may not be ‘able-bodied’, and how society can be disabling (harvey & swartz 2024; thomas 2004). admittedly, this was the experience of a privileged person with several support systems during a limited time of incapacity. what, then, might the experience be for people living with permanent disabilities? it was during this time that leslie and i wrote up the findings of the research project on the care of ageing parents (marchetti-mercer et al. 2020) using the theoretical framework of transnationalism, which is widely used in migration research. transnationalism characterises a new type of migrating population that uses networks, activities and lifestyles reflecting both their host countries and their countries of origin (schiller, basch & blanc-szanton 1992). with the relative ease of international travel and increased availability of information and communication technologies (icts), migrant families are able to maintain relationships despite geographical distance, in ways that were not previously possible (marchetti-mercer 2017). since the rise of the internet in the 1990s, there has been growing excitement about the potential for technology to bring about the ‘death of distance’ (baldassar 2007; craincross 2001; marchetti-mercer, swartz & baldassar 2023b. we were particularly moved by the story of emma’s family, described in ‘migration, technology and care: what happens to the body?’ (swartz & marchetti-mercer 2019). we concluded that the enthusiasm within the field of transnationalism about the positive aspects of icts for maintaining family relationships may overlook the challenges associated with using technology in the context of disability, and when ageing, bodies experience physical decline, such as reduced vision. as already mentioned, i received no specialised training in the field of disability as part of my professional training as a clinical psychologist, which sadly reflects the field of psychology at large in south africa (harvey & swartz 2024). leslie, on the other hand, had consistently shown his commitment through his scholarly work and activism to develop better conditions for people with disability in south africa and elsewhere on our continent (see publications such as swartz 2009, 2018, 2023). one way to achieve this outcome is to mentor, opening someone else’s eyes to the debates at hand. ‘disability, as the notable disability studies scholar rosemarie garland-thomson is often quoted as saying, is nowhere until you see it. then, it is everywhere’ (harvey & swartz 2024:538). in the field of migration, the gap is similar. it has been argued that disability and migration studies are often poorly integrated, typically running parallel to each other, without addressing the need for a more cohesive approach (see, for example, duda-mikulin 2024). this lack of cohesion may lead to the fact that ‘migration theory grows without the person with disability, disability studies without the migrant, and practice without the disabled migrant’ (pisani & grech 2015:425). this became more evident in another research project that leslie and i led, together with loretta baldassar, between 2018 and 2023. it explored the experiences of transnational african migrant families (including rural-to-urban south african migrations) and their use of technology to maintain familial relationships (eds. marchetti-mercer, swartz & baldassar 2023a). the project’s focus was not on disability; however, issues of inequality and marginalisation linked to physical impairment and ageing again emerged from the data analysis, primarily thanks to leslie’s keen attention. examples included older rural south africans whose poor eyesight made reading small letters on their cellphones difficult, forcing them to prefer direct call phone communication (which is more expensive) because of their inability to use the technology with ease. josephine, a participant from rural limpopo, shared the experience of many people in such circumstances: ‘we have poor vision, and also we struggle about how to dial the numbers [on a smartphone]’ (maja et al. 2023:57). economic disadvantages, which affect many african migrants to south africa, also restrict access to advanced technological tools such as smartphones or laptops and funds to purchase data, making communication both difficult and costly. south africa is characterised by severe socio-economic inequality. however, digital inequality, although perhaps less visible, is no less important (maja et al. 2023). although more affluent migrants are easily mobile and are able to benefit from the relatively easy access to international mobile, this is not the case for poorer migrants and even less for migrants with disabilities. hughes (2017:468) argues that ‘… in this contemporary tale – unmatched in scale – of diasporas and uprooted lives, disabled migrants are “the most invisible”’. this invisibility was highlighted in our study’s findings. we argue that ‘geographical distance is socially constructed. by this, we mean that distance is experienced differently, depending on socio-economic status’ (marchetti-mercer et al. 2023b:185). we focus on the social and economic conditions of migrants, as physical ability can also impact the ability to move. as dunn (2010:1) points out, ‘[a]t the international level this involves the movement across national frontiers, and it is clearly easier for some bodies to negotiate those borders than it is for others’. what might seem a relatively short distance to someone with access to dependable transportation can feel insurmountable to someone who can only access unreliable and uncomfortable public transport, which is often the case in african countries (mkabile & swartz 2022). the experiences of many elderly participants in the rural areas of south africa whose children had moved to the urban area of gauteng reflected this challenge (eds. marchetti-mercer et al. 2023a). for example, many participants in our study rejected travelling in a minibus taxi because of the cost and because of the physical discomfort of being in such a tight physical space. arguably, for someone in a wheelchair, for instance, travelling to another country would be extremely challenging. whereas transnational migrants by definition easily cross borders, people with a disability may struggle to travel even within their own country, let alone internationally. consequently, both migrants and people with disability may feel excluded and different, encountering additional barriers. as a result, migrants with disability may face a double disadvantage because of their minority identities (duda-mikulin 2024). economic disparities and the digital divide add to the experience of exclusion and marginalisation of migrants with physical impairments or disabilities. bacigalupe and cámara (2012:1434) offer some hope by arguing the potential of exploring the role of icts in keeping families connected ‘for transforming the psychology of immigration’, but this ignores the embodied differences when migration puts physical distance between bodies – that distance affects the possible modes of exchange and interchange. people are ‘differentially located in space, with differential abilities and opportunities to overcome … the frictional effects of distance’ (mcdowell 1996:31; also cited in o’connor 2010:76). the experiences of migrants from the global south are more likely to be compounded by challenges linked to limited access to assistive technologies, inclusive infrastructure and digital literacy. these challenges may be further exacerbated for those migrants with disabilities. while transnationalism may have introduced new ways of thinking about mobility in our technology-driven world, we should not overlook those who encounter the invisible barriers of space and distance. going forward, migration research should be strongly informed by intersectionality, recognising how disability intersects with other identities such as race, culture and migration status. digital tools should be developed that facilitate a sense of empowerment and inclusion. with regard to methodologies, the use of adaptable, participant-centred approaches that accommodate the different accessibility requirements of participants with disabilities should be foregrounded (soldatic et al. 2025). broadening the focus of research to include different types of migration, including regional and south-south migration, is further essential for reflecting the varied and diverse experiences of migrant populations (izaguirre et al. 2025). as leslie’s work has consistently demonstrated, inclusion must be intentional and intersectional while recognising the unique vulnerabilities and contributions of all individuals. acknowledgements competing interests the author declares that no financial or personal relationships inappropriately influenced the writing of this article. author’s contribution m.c.m-m. declares that they are the sole author of this research article. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s results, findings and content. references bacigalupe, g. & cámara, m., 2012, ‘transnational families and social technologies: reassessing immigration psychology’, journal of ethnic and migration studies 38(9), 1425–1438. https://doi.org/10.1080/1369183x.2012.698211 baldassar, l., 2007, ‘transnational families and the provision of moral and emotional support: the relationship between truth and distance’, identities 14(4), 385–409. 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accepted: 15 dec. 2024; published: 31 jan. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: stigma is a barrier to inclusion for people with disabilities and mental health conditions. there is increasing recognition of the need to address stigma within disability inclusive programmes, but limited research is available on what are effective participatory approaches to stigma reduction interventions. objectives: (1) to document participatory approaches used in the design and delivery of disability stigma reduction interventions in a disability and mental health programme in ghana and (2) to understand the experience of programme implementers and participants in these processes, with particular attention to the leadership and involvement of people with disabilities. method: a mixed-methods study was conducted. the data were drawn from a purposive sample of 20 in-depth interviews (idis) with programme staff, partners and key stakeholders, and 12 focus group discussions (fgds) with self-help group (shg) members, organisation of people with disabilities (opd) members, and disability champions. we conducted thematic analysis using deductive and inductive approaches. results: the programme adopted several approaches to participation at design and implementation stages, with a focus on the leadership of people with disabilities and people with mental health conditions. the process was seen to promote acceptability of stigma reduction approaches. providing opportunities for building and strengthening relationships with a wide range of stakeholders was key to successful implementation. understanding, and engaging with, power dynamics in the local context also provided important benefits. conclusions: participation of people with disabilities and mental health conditions is essential for the design and delivery of stigma reduction programmes in ghana. contribution: this study provided lessons from the field on the value of participation in reducing stigma, and the role of key stakeholders, particularly people with disabilities and mental health conditions. keywords: people with disabilities; people with mental health conditions; stigma; discrimination; implementation lessons; participation; inclusion. background globally, stigma experienced by people with disabilities and people with mental health conditions is pervasive (mostert 2016; thornicroft et al. 2022; world health organization & world bank 2011). stigma can act as a barrier to disability inclusion and the realisation of disability rights (mostert 2016). this includes being a barrier to accessing education (banks et al. 2022; united nations 2019), health services (kuper & heydt 2019), and wider participation in society including economic participation (bonaccio et al. 2020; thornicroft et al. 2022). many factors fuel stigma. in the african context, as in many other regions, a lack of information and understanding on the causes and characteristics of different types of disabilities is identified as a key factor, combined with negative social, cultural and religious beliefs and attitudes (mostert 2016; stone-macdonald & butera 2012). disability-related stigma is also pervasive in ghana, fuelled by deep rooted cultural and traditional beliefs (awedoba & denham 2014; denham et al. 2010; kassah, kassah & agbota 2012; nyante & carpenter 2019; zuurmond et al. 2020a). evidence shows that stigma, combined with inaccessible environments and institutional barriers, limits participation and inclusion of people with disabilities and people with mental health conditions (baffoe 2013; duorinaah et al. 2023; mfoafo-m’carthy, grischow & stocco 2020; mfoafo-m’carthy & naami 2022). despite growing evidence around stigma, and the need to address it, there is still limited evidence of what works to reduce stigma (heijnders & van der meij 2006; smythe, adelson & polack 2020). we conducted implementation research to explore the use of participatory approaches in the ghana somubi dwumadie (ghana participation) programme in ghana, hereafter called ‘the programme’. implementation research attempts to understand questions related to implementation of a policy or programme. an array of interacting factors can influence implementation, including personnel, resources and contextual factors, which may change over time. implementation research seeks to capture some of those issues and understand why and how interventions work in ‘real-world’ settings (peters et al. 2013). the specific research questions for our study were: (1) what participatory approaches were used in the design and delivery of disability stigma reduction interventions? (2) what was the experience of programme implementers and participants in these processes, with particular attention to the leadership and involvement of people with disabilities? the programme ghana somubi dwumadie was a 4-year disability and mental health programme in ghana that focused on four areas: (1) strengthening policies and systems; (2) scaling up quality and accessible mental health services; (3) reducing stigma and discrimination and (4) generating evidence to inform policy and practice. for the stigma reduction element of the programme, a social behaviour change (sbc) strategy was developed to understand and facilitate change in behaviour, societal norms and environmental factors (unicef 2023). this focused on three key areas: (1) creating a positive culture of support for people with disabilities, (2) increasing the use of positive disability and mental health language and (3) ensuring duty bearers enforce relevant policies and laws. key audiences targeted were the media, community members, family members, religious, traditional and community leaders, and people with disabilities, including people with mental health conditions. the strategy was primarily implemented through grants to organisations of persons with disabilities (opds), and women’s rights organisations and civil society organisations. one of the approaches for implementing activities was the use of ‘disability champions’, that is, people selected to advocate for, and engage in, the design and delivery of activities, and paid a small stipend. while there was some variation in the term used (e.g. ‘disability ambassadors’), for the purpose of this article, we use ‘disability champions’ throughout. while it was stated that ‘participatory approaches’ would be applied in the programme, this has not yet been rigorously evaluated. the purpose of this study is therefore to better understand what participatory approaches were used during the implementation of the programme. research methods and design the study used a design suited to implementation research, as defined earlier. this involved a mixed-methods approach, combining data from in-depth interviews (idis), focus group discussions (fgds) and a review of programme documentation. in terms of exploring the experience of people with disabilities, we applied an intersectional lens, where intersectionality is defined as acknowledging the multiple social categorisations of a person’s identity, how these interact and can result in different experiences of advantage or disadvantage (moodley & graham 2015). data collection one-day training on reviewing and use of the data collection tools was conducted in accra. data collection was undertaken by two research teams, each consisting of a lead senior researcher and research assistant, and inclusive of two people with disabilities, who were familiar with the national and local disability context. field work was conducted between 17th june 2023 and 27th june 2023. the idis were conducted using semi-structured interview guides that were adapted for each group, including government institutions, local non-governmental organizations (ngos) and opds, traditional and religious leaders, staff and grantees. the fgds were undertaken with 3–10 participants with a range of disability self-help group (shg) members, disability champions and members of opds. the topic guides included questions about the programme design process; what types of activities individuals and/or organisations were involved in; the nature of that participation; what they felt worked well and why; challenges and areas to improve. similar questions were tailored to the delivery of the interventions. questions were included on how men and women with disabilities were engaged in both the design and delivery processes, which included an understanding of selection processes and facilitators and challenges in fulfilling those roles. all interviews were conducted in participants’ preferred language; local language and sign language interpreters were employed to support the study, as needed. interviews took between 60 min and 90 min. detailed notes for all idis and fgds, and additionally, recordings were made and used as necessary to check or clarify issues, if required. all data were stored on password-protected computers. data were anonymised before analysis and when reporting the results of this study (sightsavers 2023). study setting and sample a purposive sample was used, with the following criteria: a geographical spread, a focus on areas with ongoing work, the inclusion of people with different types of disabilities, including people with mental health conditions, a gender balance, and consideration of logistical and safety constraints. for the purpose of this article, we drew on a subset of the data concentrating on two partner organisations where stigma reduction activities constituted the main focus of their work. for the purpose of anonymity, we describe these as ‘organisation a’ and ‘organisation b’. analysis a thematic analysis of the qualitative data was conducted (pope, ziebland & mays 2000). an initial coding frame was developed linked to the topic guide outline and a priori themes that emerged from the review of secondary programme documentation. we used a combination of deductive and inductive approaches to the analysis, with new themes and sub-themes being added and modified in an iterative process as the two research teams discussed emerging findings during fieldwork and analysis. preliminary findings were shared during a participatory stakeholder workshop at the end of field work, and further nuances were made to key themes. the lead researchers independently conducted their own data analysis using the framework and were in contact regularly to compare and contrast findings across sites. nvivo software and word were used to manage the final data analysis. ethical considerations ethical clearance was received from the university of ghana’s ethics committee for humanities (ech 162/22-23). participation in the study was voluntary and interviewees could opt out at any time and were informed that they were free to stop the interview at any time. informed consent to participate in and to record interviews was obtained from all participants. results in total, the sample consisted of 20 idis and 10 fgds, which took place across five regions in ghana. for the details of the sample characteristics, see table 1. table 1: sample characteristics. this results section is divided into two connected parts. the first part describes where and how participatory processes were used in the design and delivery phases. the second part explores the experience of programme implementers and participants in these processes. the key themes are overlapping and include: (1) the empowerment of persons with disabilities, with subthemes of knowledge, confidence building, self-esteem and internalised stigma, (2) intersectionality, (3) wider participation of key stakeholders and subthemes of relationship building and engaging with people with power and (4) acceptability. participation steps in programme design and delivery people with disabilities, including people with mental health conditions, played a variety of roles in the design stages of the programme’s stigma reduction work. other key stakeholders, relevant to the context, were also invited. step one was a formative research study with a wide range of stakeholders, which included men and women with disabilities and/or mental health conditions. this explored the lived experiences of stigma, as well as the major drivers. the results from the formative research fed into two co-creation workshops, which were conducted, firstly to develop an sbc strategy for stigma reduction, and secondly, to explore how to operationalise the strategy so that it was relevant to the local context. people with disabilities and people with mental health conditions, mainly in leadership roles, were key participants in the workshops, selected from shgs and opds. the participatory approach continued as the programme evolved. for example, regional workshops were conducted for designing a disability language guide. stigmatising language had been identified as a key driver of stigma, and the involvement of people with disabilities in the co-development of the guide was identified as an important process. people with disabilities were also engaged in a three-stage process of pretesting, adapting and reviewing posters and radio jingles in local communities. see figure 1 for a summary of key participation steps in the design and delivery. figure 1: an illustration of key participation points in the design phase. in terms of delivery, opds were one conduit for delivering the programme, alongside women’s rights organisation, and civil society organisations. a common approach was for them to employ disability champions, who were selected community members who had a variety of roles in stigma reduction; an educational role, an advocacy and influencing role, and responsibility for reporting on issues of abuse, described as an ‘enforcement’ role. empowerment of people with disabilities building knowledge, confidence and self-belief as a result of their participation, people with disabilities in disability champion roles and/or within opd positions, who were interviewed, were positive about their participation in stigma reduction activities, most commonly reflecting on increased knowledge and confidence to be engaged in activities. this is illustrated here by a female disability champion from the savannah region who had participated in the co-design of a ‘positive disability language’ guide; she then later felt she could adapt and use the material in her local setting, ‘i was so excited; i was so happy …. i then walked into the radio station to talk about this work’. in the volta region, opd members reflected on increased awareness and feelings of dignity as a result of their engagement in the language guide design: ‘we ourselves coming together to deliberate on derogatory names and developing a positive language guide has given us some awareness about how these names were really affecting us negatively, affecting our dignity and the need to advocate for our rights.’ (fgd, partner organisation, volta region) several different positive language guides were developed, by grantees in different regions, which allowed them to be tailored to the local language and encouraged local engagement on the tool. they were also a popular tool to use for the interactive programme on the radio. for example, one of the grantees had a radio programme called dignity hour with people with disabilities as resource persons speaking on the radio. this growth in confidence, and self-belief, was also reflected as a consistently strong theme in the secondary programme data, illustrated here by a final change story: ‘at first, i was feeling shy to participate in community and family gatherings. i thought they will not listen to my views based on several experiences. through this project, i’m empowered to be involved in activities in my family and community.’ (woman with a disability, secondary data, small grants evaluation) internalised stigma interlinked with the issue of empowerment and building self-confidence was the challenge of internalised stigma, or more commonly described by staff as ‘self-stigma’. this was mainly identified in staff and partner interviews as one of the barriers they identified when engaging with leadership of people with disabilities and mental health conditions, and something that they felt needed to be better understood and addressed in order to maximise their participation. this was described here by one grantee: ‘self-stigma was high throughout the implementation of the project; we had to constantly talk to the disability champions to give them confidence in themselves. [what do you mean by self-stigma?]. that you yourself are looking at your condition – i have self -pity, i don’t belong, i make myself less of a person with my thoughts – whereas if you respect yourself then you have a voice.’ (idi, grantee, ne region) the review of secondary programme documentation similarly highlighted internalised stigma as a challenge faced in encouraging participation. for example, a survey of 159 people with disabilities as one component of a programme evaluation illustrated that ‘being worried that others will find out they had a mental health or disability’ (66%) or ‘feeling ashamed of their condition’ (49%) were the main forms of stigma that existed at the end of the projects. intersectionality and participation overall, there were lower levels of participation of women with disabilities, and while there was some improvement over time, such as setting targets for women’s participation in trainings, and the engagement with female-focused opds, it still remained an issue. identified challenges included limited available time, given other domestic and caring roles within the family, and lower overall representation of women in leadership positions within opds and shgs. people with hearing impairments were also less likely to be well represented, with the exception of targeted engagement with the national deaf opd. the commonly held view across all sites was that what limited their participation was not stigma but the dearth of sign language interpreters. this deficit of sign language interpreters was identified as a national problem, and one key stakeholder argued this was an example of ‘major discrimination’, preventing the meaningful engagement of people with hearing impairment. for people with a mental health condition, at a structural level, there was some apparent progress towards better linkages with the regional opd umbrella organisations, but otherwise their representation was still limited, for example, in roles such as disability champions. other characteristics such as poverty, type of disability, and position and relationships in society were also reported to shape the experience of people with disabilities in their level of participation and ability to implement. this is illustrated here by two different experiences of disability champions; one man with a physical disability, a teacher, had been secretary of the regional disability network for 14 years, a member of the district assembly common fund committee, and owned his own motorbike. he was very active in his role, leveraging his wide range of contacts to support his work, including informal meetings with key people to support the stigma reduction work. in contrast, at a second very rural site, a young woman with albinism explained how she was a single mum, struggling financially with no job aside from the small stipend for her disability champion role, also supporting her sister’s family as well as her own two children, and had no access to her own transport. she had limited networks to draw upon. while she was committed to her role, she expressed her limited capacity at times to implement activities and requested more training and support. broad participation of key stakeholders while there was a focus in the programme on the participation of people with disabilities and mental health conditions, a key part of the strategy was also engagement with and building alliances with a broader range of stakeholders, including religious leaders, caregivers, ngos, traditional authorities and government implementing agencies. key overlapping subthemes here were the benefits of building strong relationships and engagement with people in power. opportunities for building and strengthening relationships were afforded in various planning and co-design meetings, for example, the use of ‘interface’ meetings, which were meetings that were facilitated between shgs and key officials in local government assemblies. these spaces were seen to provide an important platform to have contact with, understand and engage with individuals and/or organisations who typically had power at various levels in the community, namely traditional leaders, religious leaders, the media and various local government organisations and platforms: ‘what we gave the [disability] champions was a structure to engage with the key players.’ (idi, organisation a, grantee staff, ne region) the benefits of building these relationships were highlighted particularly by people with disabilities, for example in their role as disability champions; ‘through this togetherness more senior people attended meetings’, people were more likely to listen to them ‘if they were on your side’: ‘i will go around on my bicycle from place to place – markets, church, youth groups. i will meet traditional leaders as they are powerful.’ (fgd, disability champions, savannah region) the secondary programme data on the co-development of the disability language guides also illustrated how having co-design workshops enabled people with disabilities an opportunity to directly challenge experts, including academics and local educators and explain what local language words and descriptions around disability and mental health were acceptable to them, resulting in changes to the material. this building of relationships with the relevant government or traditional authorities was also identified as key to their adoption of the stigma interventions. this was most notably observed in the volta region where key stakeholders played a particularly strong role in implementation of the stigma work, which included the use and reinforcement of sanction mechanisms, such as the application of fines, and upholding of the law, one of the key strands of stigma reduction work: ‘and i told the people with disabilities are also human like you. they eat, drink and do other things like you, so if anyone call them names like ‘pozo’ [derogatory term for cripple and nickname given to a ghanian musician with a disability] the person would be charged ghc500.00 [45 dollars].’ (idi, traditional leader, volta region) ‘previously i saw commission on human rights and administrative justice [chraj] as an organisation not to get closer to, but it [the project] has brought us to those who are powerful.’ (fgd, disability champions, savanah region) the different approaches to selecting disability champions illustrated some lessons in terms of the benefits of fostering different types of relationships within the programme. in organisation a, all disability champions were people with disabilities and people with mental health conditions, selected in consultation with the regional chapter of the national disability umbrella organisation, and state organisations. they were largely chosen from those in leadership roles in opds and shgs. one of the perceived strengths of this approach was continued close engagement with their membership organisations, where members, for example, described them as being a ‘mouthpiece’ for them. in one site, however, a weaker relationship with the regional disability network resulted in less overall support. in contrast, in organisation b, the disability champions were a mix of both people with disabilities and mental health conditions (40%) and other community members (60%). organisation b leveraged strong relationships with traditional leaders, largely in the rural areas, to recommend community members as disability champions. the identified advantages were that local leaders were generally found to be willing to give ongoing support, which also enhanced community acceptance of the work. community members elected to the role were teachers, district assembly and committee members, and religious and opinion leaders. they were generally influential people in the community who leveraged their connections and power in different settings: town hall meetings, schools, radio stations and community information centres. a summary of these different models of disability champions is provided in table 2. table 2: a summary of models of disability champions. overall, organisation b was particularly strong in their engagement with partners. these strong relationships were attributed to several factors; having a long history, almost 20 years, of the organisation working at the grassroots in the region on disability rights, existing strong networks and trusted relationships to build upon, and involving partners from the start of the design process. all of this contributed to greater active participation of other stakeholders in adopting and implementing the stigma work, illustrated here by a quote from a government department: ‘we as a department has worked with them for a very long time. and we know they play a major role in the disability sector, supporting and complementing what the government does. and with the introduction of the social behaviour change [strategy], when they started, they also called us to inform us about what they were doing and if we had any input to make. … i used it [the positive language guide] to sensitise our officers and they are also using it.’ (idi, government institution, volta region) acceptability another recurring theme was that stigma reduction materials and approaches are rendered more acceptable by the participation of people with disabilities and mental health conditions and other stakeholders. greater acceptability was reflected in the high levels of satisfaction expressed about the suitability and culturally appropriate stigma materials and approaches for the local audience. the role of people with disabilities directly engaging with other key stakeholders meant that traditional views could also sometimes be challenged, and more inclusive and acceptable language and images then adopted. for example, the development of the language guides in a co-design workshop afforded a platform for people with disabilities to directly challenge experts, such as academics and other educators, and explain directly what types of terminology were more acceptable to them. ‘the posters made an impact on the community as the community sees their members with disabilities telling them in their own language to stop name calling which sends a signal. so, more materials should be translated into the local language.’ (kii, partner organisation, region b) another participatory approach adopted was the pretesting of materials for the production of posters, radio jingles and language guides. this was strongly implemented at one site (organisation b) where a combination of people with disabilities and mental health conditions, and a range of local partners, including local traditional leaders, were engaged in a three-step review process. the poster images in this region were then changed from the original ones, to preferred local images, combined with local languages used on radio jingles. a consistent sub-theme was that the participation processes fostered greater ownership, thus strengthening the wider adoption and use of the materials. this was illustrated by the example of a female traditional leader who was engaged in the design process and then placed a poster on her palace wall, and used it to prompt discussion around stigma and disability. other examples included local chiefs contributing to the language guides and promoting the stigma resources on the radio and via local community information centres. importantly, there was also evidence of adoption of the materials by christian and islamic religious leaders in this same region. however, in a second site, limited time was highlighted by organisation a as one of the tensions in adopting quite lengthy participatory processes, which resulted in more limited stakeholder engagement. as a result, there were fewer adaptations of the materials and less take up and application of the stigma materials. discussion this implementation research has illustrated the processes of implementing a participatory stigma reduction intervention for people with disabilities and mental health conditions in ghana and explored their experiences of this engagement. the programme demonstrated how it is possible to provide meaningful opportunities for people with disabilities and mental health conditions, to engage in both design and implementation of a stigma reduction strategy. this aligns with the core general principle of the united nations convention on the rights of persons with disability (uncrpd), to uphold ‘full and effective participation and inclusion in society’ and the importance of being ‘actively involved in decision-making processes about policies and programmes that affect their lives’ (united nations 2006). while there is limited evidence of what works in stigma reduction, research has shown the importance of maximising social contact with people with disabilities and mental health conditions (adu et al. 2022; heijnders & van der meij 2006; smythe et al. 2020). in this article, it was evident that through promoting participation of people with disabilities and mental health conditions, they were provided with opportunities for direct engagement with community stakeholders and thus arguably have greater visibility. this is likely to help contribute towards stigma reduction as part of the process of programme implementation. one of the identified benefits of a participatory approach shown in our study was enhanced acceptability of the stigma-related materials, where acceptability is defined as satisfaction, intent to use, perceived appropriateness and fit within organisational culture (bowen et al. 2009). other studies have similarly illustrated how direct and expert knowledge of their issues can help identify and address their unique needs (mfoafo-m’carthy & naami 2022) and support an approach that is more culturally relevant (hartley et al. 2009). this study also demonstrated the identified benefits of participation in terms of improved knowledge, confidence and self-esteem of people with disabilities. this can be described as personal empowerment, or ‘power within’, adopting the model of rowlands (1997) in her exploration of the different dimensions of empowerment. heijnders and van der meij (2006) in their review of disability-related stigma reduction interventions also detail that an approach which targets the ‘intrapersonal’ level is vital for individual empowerment, who is then in a better position to effect change. interlinked with this notion of facilitating personal empowerment, we identify the issue of internalised stigma as a challenge to participation. other studies have shown how internalised feelings of oppression and shame can result from social stigma, and commonly experienced among people with disabilities (rohwerder 2018), and people with mental health conditions (ali et al. 2012; brohan et al. 2010). this highlights the need to further strengthen this stigma component in order to maximise participation and in turn empowerment. the study also illustrated that engagement with power holders provided a range of additional benefits in the implementation of the interventions. we know from other studies on civil society participation the importance of understanding and harnessing those who have power over economic, social or political factors in order to effect change (gaventa 2005). in terms of influencing social stigma, the participation of opinion leaders is likely to be important in changing social norms (rohwerder 2022; van brakel et al. 2019). it has also been argued that to reduce stigma there needs to be a better understanding of the relationship between stigma and power, in order to change the balance of power between those who stigmatise and those who are stigmatised (link & phelan 2014). in the context of ghana, a study with caregivers, often single mothers, also illustrated their limited power over social and political processes and the value of harnessing other gatekeepers to effect change (zuurmond et al. 2020b). finally, in our study we illustrate that different characteristics such as gender, type of disability and poverty intersect to shape peoples’ experience and level of participation. the lower overall engagement of women with disabilities reflects the global literature (moodley & graham 2015; united nations women 2018) and the fact that men still dominate leadership positions of the shgs and the opds is also consistent with the literature in the ghanaian context (naami 2014). deaf people were also less likely to participate, held back by the dearth of sign language interpreters. the lack of availability, and sometimes limited proficiency of sign language interpreters, has been demonstrated in other studies in ghana (mprah et al. 2024) and this is further complicated when deaf people themselves are not proficient in sign language (duorinaah et al. 2023). this highlights the importance of applying an intersectional lens in programme design, with targeted approaches to increase the capacity and participation of women with disabilities, including women-led opds, and avenues to further strengthen the participation of people with mental health conditions and people who are deaf. strengths and limitations a strength of this implementation research was the inclusion of researchers with knowledge of the local context, as well as lived experience of disability in ghana. both research teams constantly compared and contrasted findings across field sites to maximise the opportunity for reflexivity and minimise bias (darawsheh & stanley 2014). nevertheless, some of the authors were also involved in the design and delivery of the programme, and this may have influenced their perspectives and interpretations of the experiences captured in this study. the methodology used a purposive sample and the findings are therefore not generalisable but the triangulation of findings between fgds, idis and secondary data, and a final workshop to share emerging findings with key stakeholders, strengthened the validity of the data. there was limited representation of people with mental health conditions and people with hearing impairments, even though for the latter group, sign language interpreters were available. this may have biased findings and would need to be addressed in future research. in future it would also be useful to gather more in-depth data on disability champions in order to better understand the dynamics and intersectional factors that shape their work on stigma reduction. conclusion stigma is a barrier to inclusion for people with disabilities and people with mental health conditions. the adoption of participatory approaches that promote the engagement of people with disabilities and people with mental health conditions can support elements of their understanding of how power dynamics work in the local context and is key; building relationships with and encouraging the participation of people with disabilities and mental health conditions can offer many benefits for implementing stigma reduction. acknowledgements the authors would like to thank members of the research steering group with particular thanks to the ghana federation of disability organisations. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.z.: co-principal investigator, technical lead, responsible for research design, conducted interviews and lead on analysis at one site, and writing the first draft of manuscript; a.n.: co-principal investigator, contributed to research design and planning, conducted interviews, shared lead on analysis and writing key findings, and edited the manuscript; l.a.-k.: performed methodological design, manuscript editing and funding acquisition; c.s.: contributed to conceptualisation, methodology and manuscript editing; s.b.: assisted in interview guides and manuscript editing; c.v.: provided support in methodology, review and editing, and funding acquisition; m.c.: contributed to investigation, project administration in field and data curation; a.n.a.: helped in investigation and data curation; d.m.: facilitated methodology and project administration; c.l.: contributed to reviewing and editing. funding information the research was funded by sightsavers, with a contribution from ghana somubi dwumadie, funded by uk aid. data availability consent was provided by the key informants and fgd participants for data to be shared within the research team only. future policy for tropical health will work with donors to develop a data sharing policy. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s 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intervention’, bmc medicine 17, 1–17. https://doi.org/10.1186/s12916-018-1245-x world health organization & world bank 2011, world report on disability, who, geneva. zuurmond, m., seeley, j., nyant, g.g., baltussen, m., abanga, j., polack, s. et al., 2020a, ‘exploring caregiver experiences of stigma in ghana: they insult me because of my child’, disability & society 37(5), 827–848. https://doi.org/10.1080/09687599.2020.1851172 zuurmond, m., seeley, j., shakespeare, t., nyante, g.g. & bernays, s., 2020b, ‘illuminating the empowerment journey of caregivers of children with disabilities: understanding lessons learnt from ghana’, african journal of disability 9, a705. https://doi.org/10.4102/ajod.v9i0.705 ‘simply my own’ book title: beauty is a verb: the new poetry of disability authors: jennifer bartlett, sheila black & michael northen (eds.) isbn: 9781935955054 publisher: cinco puntos press, el paso, tx, 2011, 326 p., $16.33* *book price at time of review reviewer: kobus moolman1 affiliation: 1department of english studies, university of kwazulu-natal, south africa postal address: po box 22322, mayor’s walk 3208, south africa how to cite this book review: moolman, k., 2014, ‘“simply my own”’, african journal of disability 3(1), art. 116, 2 pages. http://dx.doi.org/10.4102/ajod.v3i1.116 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. book review open access    ‘the disabled self is always a reader of his or her own body.’ (amber dipietra)poetry about disability (written by men and women with disabilities) has suffered from a multiplicity of forms of misrepresentation and ignorance. the popular perception of disability poetry (indeed the popular perception of poetry in general) has favoured the sentimental and the moralistic. this is what i call hallmark poetry; poetry that is determined to impart some type of inspirational lesson to the reader. and what better lessons than those that men and women with disabilities (preferably silently!) impart: courage, stoicism, patience in the face of tragic misfortune. the american anthology beauty is a verb: the new poetry of disability (2011) explodes this stereotype of poetry, of poetry about disability, and of disability. this ground-breaking literary collection testifies to a uniquely vital strain of poetry, one that despite its distinctive historical characteristics (in this book at least: modern america) nevertheless helps re-define the global field of disability studies and contemporary literary theory. their circumscribed readership notwithstanding, literary anthologies are able to bring together and describe the particular imaginative energies at work within a given moment, and thus transform the existing cultural debates and even spearhead a range of alternatives to the mainstream (both politically and aesthetically). i am thinking here of critical anthologies like donald m. allen’s the new american poetry: 1945–1960 (1960), jerome rothenberg’s technicians of the sacred (1968), and, closer to home, collections like voices from within: black poetry from southern africa (1982) by michael chapman and achmat dangor, and the more recent it all begins: poems from postliberation south africa (2002) edited by robert berold. what all such collections have in common is their ability to straddle disparateness (without flattening out or homogenising the field) and to enlarge rather than de-limit perceptions and experiences. beauty is a verb is precisely one such collection. in her preface to the book, jennifer bartlett argues for ‘explor[ing] not only what it means to have a genre called “disability poetics”, but to look at poetry influenced by an alternate body and how this intersection forms a third language’ (p. 15). in this very brief statement bartlett brings together succinctly what i consider to be three key concerns not only of the whole collection itself, but of the contemporary discourse of disability studies too: the idea of alterity (or the non-normative), the idea of the body (or more explicitly, embodiment) and the notion of some synthesis (i use this term guardedly, aware of its deeper meaning) that points toward a new direction, what michael northen calls ‘a redefinition of beauty and of the way that disability is perceived’ (p. 21). at the heart of this collection, then — whether the poets aligned themselves openly with the aims of disability poetry or not — lies a challenge to the normalising discourses of embodiment, an interrogation of the socially constructed nature of our concepts of wellness, ability, beauty, even love. as poet kenny fries writes in his long poem ‘beauty and variations’: ‘how else can i quench this thirst? my lips travel down your spine, drink the smoothness of your skin. i am searching for the core: what is beautiful? who decides?’ (p. 21) beauty is a verb is thus more than just a straightforward anthology of poetry. it is many things at once. like allen’s the new american poetry: 1945–1960 it does seek to promote a new type of poetry, one that is slowly beginning to be recognised as a distinct genre in its own right (i.e. ‘disability poetics’) but like allen’s collection, too, it includes important essays and statements by the poets themselves that help to map the field in a sometimes idiosyncratic, sometimes theoretical manner, but always deepening and challenging the reader’s sense of what ‘disability poetics’ might be, and so assisting the reader to understand the differences and the similarities between the various poets included in the collection. michael northen, well known as the founder and editor of the disability poetics journal, wordgathering, sketches in broad strokes a history of american disability poetry, outlining some of the key (if neglected) poets, activists and theorists who contributed to the movement, whilst acknowledging that: yet identifying oneself as a writer of disability poetry or even admitting the legitimacy of a body of work that could be called disability poetry itself is still a bridge that many poets themselves are reluctant to cross. (p. 23) the book goes on then, in a chapter called ‘early voices’, to feature and discuss the work of some of the early (mid-to-late 20th century and all sadly deceased) pioneers of the field: poets like larry eigner, tom andrews, vassar miller, robert fagan and josephine miles. eigner, a cerebral palsied poet, does not address his disability directly, but in his form and layout on the page registers his attentiveness to the minutiae of everyday life seen from a stationary viewpoint. andrews crosses genres rapidly, from memoir to letter to short lyric, all in his ‘codeine diary’, whilst fagan’s poem ‘stiege’ is an extended meditation on motion (walking, climbing stairs) that shuttles back and forth between poetry and prose in a highly original manner. the next section in the book, entitled ‘the disability poetics movement’, anthologises the work of poets who, as bartlett describes it, ‘speak to a celebratory narrative of the non-normative body’. jim ferris — one of the chief theorists of what he calls ‘crip poetry’ — sings the body broken in true whitmanesque fashion. kenny fries’ poetry is very interesting, although quite formal (making use of long two-line stanzas), the intensity of his writing combines plain speech with evocative, even sensuous renderings of the body that are both excitingly literal and metaphoric at the same time. jillian weise, like fries, is another very strong poet. ‘the amputee’s guide to sex’ is darkly humorous, whilst ‘the old questions’ (‘do you sleep with it on?’, ‘do you bathe with it on?’, ‘will you take it off in front of me?’) is confrontational, tender and poignant all at the same time. the final two sections of the book, ‘lyricism of the body’ and ‘towards a new language of embodiment’, are almost indistinguishable from each other, at least for me. (this is not a criticism.) the first section ranges from very effective dryly humorous poems by hal sirowitz to formally innovative pieces by laurie clements lambeth that echo the convulsive, staccato experience of multiple sclerosis. in her essay on disability and confessionalism, sheila black moves our stereotypical conception of this genre away from an almost prurient obsessiveness towards what i feel is the much more interesting, though more ambiguous, borderline between truth and fictionality: as a poet, as a storyteller, i am attracted to the unruly and confrontational elements of the confessional, to the ways it complicates personal truth through a presentation that makes the audience continually question whether the speaker is to be trusted. (p. 205) in her subtle and understated poetry black successfully stages the tensions inherent in this liminal space, whilst the work of stephen kuusisto, who is blind, is also interested in notions of truth, but more after emily dickinson’s: ‘tell the truth, but tell it slant.’ the final section in the book foregrounds the work of poets with disabilities whose work is concerned overtly with formal experimentation; as bartlett writes in her preface, ‘rather than explaining an individual story, bodily condition is manifested through form’ (p. 17). there is insufficient space in this review to do justice to the strength of writing in this section (poets like c.s. giscombe, amber dipietra, bartlett herself and danielle pafunda); however, i must emphasise that the type of representation involved in this closing part goes far beyond a mere synergy between form and content. it points to a set of deeper relationships that traverse the inner and the outer, the real and the imaginary, language and the body, experience and thought. this is one of the radical breakthroughs that disability poetics has achieved, and one that demands recognition and study, particularly on the african continent. disability poetics has been able to take its natural and normal (!) involvement with embodiment and interfuse this with a range of contemporary literary styles from new formalism to l-a-n-g-u-a-g-e poetics, from the modern long poem to life writing, in order to arrive at a new connection, a new place. as bartlett writes in ‘5 poems from autobiography’: composed primarily of water and light this is my body i am its light a mere shadow remains so that, the body is erased excepting movement i am all motion and this motion is neither weak nor hideous this motion is simply my own. (p. 305) abstract introduction conceptual framework methods and design results discussion, contribution, implications and recommendations conclusion acknowledgements references about the author(s) tawanda makuyana department of tourism research unit, faculty of economic and management sciences, north-west university, potchefstroom, south africa engelina du plessis school of tourism, faculty of economic and management sciences, north-west university, potchefstroom, south africa oliver chikuta department of hospitality and tourism, faculty of hospitality and sustainable tourism, botho university, gaborone, botswana citation makuyana, t., du plessis, e. & chikuta, o., 2022, ‘literature profiling on tourism, impairment and disability issues: a future directional guide’, african journal of disability 11(0), a862. https://doi.org/10.4102/ajod.v11i0.862 original research literature profiling on tourism, impairment and disability issues: a future directional guide tawanda makuyana, engelina du plessis, oliver chikuta received: 11 mar. 2021; accepted: 29 may 2022; published: 14 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: south african tourism is evolving towards accommodating disabled people. within the same standpoint, the country receives ageing tourists as a major international tourism market from the global north, whose access needs are similar to disabled people. the present article explored ‘blind and blank spots’ in the extant literature on tourism–impairment disability as a synchronised field within academic research to provide theoretical insights and gaps for the disability-tourism research community to consider the composite concept instead of individualistic concepts. objective: the objectives were: (1) to track knowledge development from 1990 to 2018 using a narrative literature review approach and (2) to justify future research areas previously overlooked and understudied within a tourism–impairments–disability perspective in south africa and beyond. method: a narrative literature review search strategy was used. keywords and synonymous terms were used in electronic searches of scopus, sciencedirect, sabinet online, emerald insights journals, african journals and google scholar. the literature screening process used predetermined inclusion and exclusion criteria for the data source. content thematic analysis was adopted for the present study. results: the findings reflect a dearth of tourism–impairments–disability research in south africa. nonetheless, there is an observable pattern of slow growth in research after the 2000s. the extant literature is skewed towards the tourism supply side and sporadic on tourism demand (tourist experiences), education and skills development. conclusions: it is clear that the absence of scientifically developed knowledge on disability–impairments–tourism affects inclusive tourism growth. therefore, the research community should consider disability-inclusive (accessible) tourism management, human resources and marketing practices and knowledge for teaching material in future research. contribution: the article mapped and provided insights that sets a research agenda for tourism research community to see the gaps in literature and/or knowledge for accessible tourism (disability-inclusive) tourism to be a game changer as found by unwto (2020) with low-resources setting. thereby setting a tone towards call for more research that can uncover an economic narrative that shows a relationship between skills development, labour and consumer markets for the participation of diverse disabled persons as such is shown as understudied in low-to-middle income earning countries like south africa. keywords: inclusive tourism; access-needs in tourism; disability-impairment-tourism; disability-tourism research; future disability tourism research age. introduction the global north incepted activism and advocacy for disability inclusion through movements dating back to the 1970s (nzo 2019). in the global north, research and knowledge development in tourism began in the 1800s (visser 2004). nonetheless, tourism only began to be regarded in the academic research field in the 1970s in south africa (la fuente-rodes et al. 2016; adukaita et al. 2016; booyens 2020). in the research space, the disability and tourism fields have been conducted separately in these past decades. this background draws attention to desktop research from 1990 to 2018, because it was a period: (1) covered by the primary study, of which the current article was an element and (2) when south africa was positioned to be disability-inclusive through the constitution of 1996, chapter 2; the signing and ratification of the united nations convention for the rights of persons with disabilities (uncrpd) of 2006 in 2007; and the domestication of the said convention into a white paper for rights of persons with disabilities in 2015 (kazou 2017). despite the milestones mentioned above, disability, impairments (health and body conditions) and tourism as a joint field in research remained an area that was missing from the research agenda and the narratives and discourses (knowledge development) generated by scholars, universities (other higher education providers included) and research entities in south africa. according to buhalis and darcy (2013) and darcy et al. (2020), impairment is the loss of limbs or parts of an individual body. on the one hand, disability has been an issue of debate amongst international, national organisations and individual academicians, of which researchers who are skewed towards medical models define disability as the inability of an individual to participate because of acquired impairment and health condition (kazou 2017). on the other hand, disability researchers who uphold the social model’s perspective regard disability as more about the interaction between persons with impairments’ intrapersonal, interpersonal and environmental arrangements developed to solely cater to nondisabled counterparts (vehmas & watson 2014; 2016). simbaya et al. (2019) have an all-around interpretation of disability as an evolving concept that aims to facilitate full, optimal and effective participation of a disabled person without compromising their health needs, dignity, choice and independence when participating any type of activities in any community. the present article uses the term ‘disabled persons or disabled people’ to refer to individuals who acquired impairment, whether at birth or with life circumstances like ageing, incidents and accidents. the usage of the above mentioned term, disabled people, implies that unless there is universal accessibility, the said people are being obstructed by an environmental arrangement that exacerbates the loss or limitation of the body (kazou 2017). the loss mentioned above is due to environments created by others that create physical or social barriers that disable or obstruct an individual with an impairment from participating equally with nondisabled people in the community’s normal life (kazou 2017). hence, the ‘ability’ of the individual who acquired an impairment is not being questioned, but the ‘disability’ can be associated with limited consideration for the access needs of the said people to participate in an environment that supports their capabilities (buhalis & darcy 2011). the argument in this article upholds the reality that both disabled and nondisabled people are heterogeneous in terms of their talents and role in socio-economic-based development. however, when it comes to empowerment initiatives like tourism education, it became a norm to bring access to information. knowledge of diversity in all forms addresses attitudes, behaviours, choices, dignity, and independence of nondisabled people, whilst such is limited in considering disabled counterparts (vehmas & watson 2016; simbaya et al. 2019; makuyana & du plessis 2022). as much as tourism’s co-created economy is concerned, there are misconceptions about disability and a lack of understanding of the impact caused by either impairment or health conditions on tourism growth (makuyana 2020). the limited knowledge development in said field exacerbates misunderstanding of health conditions (acquired impairments) (kazou 2017), talent and diversity (gronvik 2007), the workplace (groschl 2007; 2011) and tourism co-production and co-consumption (darcy 2010). therefore, the inclusion of disabled people is incomplete if socio-economic empowerment in tourism that upholds diversity is void of sufficient research that can inform the co-creation of resources to support inclusive tourism practices. for the study, tourism is considered a concept that describes the process when one voluntarily leaves one’s usual place of residence to travel to another environment for any purpose for less than a year (camilleri 2018). the current article identifies obstacles tourism practices face in education, community and industry because of the limited contextualised research-based knowledge beyond legal compliance (la fuente-rodes et al. 2016; darcy 2010). in most tourism organisations within the value chain, disability inclusion is furthered by individuals who have disabled family members (makuyana & du plessis 2022). thus, inclusion emerges more from personal than organisational practices (travability 2018; tan 2014). the three concepts are always presented separately from the tourism co-created economy, which leaves tourism stakeholders in a dilemma regarding implementing disability inclusion in the day-to-day management and business operations (shaw & cole 2004; tan 2014). based in the south african tourism research context, if the above mentioned concepts maintain the discourse reflects: tourism stakeholders’ misunderstanding of disability inclusion, results in challenges in accommodating the needs of disabled guests. (snyman 2002). mainstream tourism policy and other legislative frameworks (for education, community development and industry) are void of disability inclusion. resulting in the formulation of separate disability policies that include disabled people in mainstream activities (makuyana 2020). tourism experiences amongst disabled tourists reflect systemic discriminative attitudes and behaviours when co-producing and co-consuming tourism products and services (breedt 2007). disability and/or accessible and/or inclusive tourism can fail to effectively grow as the market needs remain undiscovered (department of tourism report 2011; makuyana & du plessis 2020), and their expectations, motivations and needs remain unfulfilled (chikuta et al. 2017; 2018). tourism educators and industry roleplayers rely on intuitive know-how when managing their disabled counterparts. such an approach embeds apathy and over-sympathy that can be disabling to disabled peers (la fuente-rodes et al. 2016; makuyana & du plessis 2022). disability inclusion has been an issue that remains in scholarly debates with a limited practical understanding of the concept among tourism role players resulting in south african tourism. (research, education, industry and hosting community included) ‘dragging its feet’. the global north has identified accessible tourism as one of the main avenues for recovery after the coronavirus disease 2019 (covid-19) pandemic (wto 2020). darcy et al. (2020) blazed a trail in the transformation of disability tourism from a niche, specialised or small market to an accessible, mature tourism market because: the global north has more ageing tourists with adequate financial resources, supported with time to participate in tourism with more extended stays and spending, and they often travel with more than two people. ageing tourists share similar needs with disabled tourists but don’t want to be labelled or identified as disabled tourists because of disablism that regards people who acquired impairments as homogeneous. from a south african context, the department of tourism report (2011) shows only anectodical evidence on the readiness of the industry to handle accessible tourism because of a shortage of research on disability, impairment and tourism. if such existed, it would be easier for skills development to develop teaching material to prepare the public and private sectors for the realities of south african tourism. thus, in the department of tourism report (2011), the commissioned researchers relied only on non-african (south africa included) research to argue for accessible tourism. on the one hand, the present authors believe that a composite concept can alleviate the obstacles in knowledge development (research) to unveil the relationship between tourism, disability and impairment for tourism growth. on the other hand, a review of extant literature can identify research areas to allow the research community to consider future studies. conceptual framework the current article presents a conceptual framework in figure 1 below that shows tourism research has a parallel relationship to research on impairment and disability (exclusion and inclusion). the outcome and impact of research conducted as separate fields of study hardly relate to each other in principles and practice because of the absence of context and applicability. figure 1: conceptual framework for the study. figure 1 shows that research on tourism (hospitality, travel services, attractions and education included) can have a reciprocal linkage with disability and impairment as a composite concept. accessible tourism research would unveil disability-inclusive approaches that are rooted in knowledge development. the present authors believe tourism requires a body of knowledge that informs the reality of impairments (health conditions) and disability within tourism practices. such scientific knowledge is critical to enhancing a comprehensive and balanced understanding of the concepts in a composite and the relationship thereof. previous studies on impairments, disability and tourism are important to ascertain the status quo (gap analysis) whilst identifying areas towards greater understanding of this composite concept and giving direction for future research. the objectives of the article are: to track knowledge development from 1990 to 2018 using a narrative literature review approach to justify future research areas previously overlooked and under-studied within a tourism–impairments–disability perspective in south africa and beyond. hence, firstly, as snyder (2019) recommended, a narrative literature search strategy is outlined under the methods and design that allowed the review processes to gather and then analyse data. secondly, the results and findings are presented. thirdly, the findings are discussed, and lastly, the conclusions are presented. methods and design context: south africa south africa is in the g20 group from an economic and political position. the said group has countries in the global north that have developed their systems towards inclusive approaches (nzo 2019; also see table 1 below). hence, socio-economic and political-led migrations prevail amongst the countries in such groups (tourism comes into the picture) (haarhoff & de klerk 2019). therefore, south africa needs to conform to disability-inclusive tourism research (knowledge development). this is reinforced by haarhoff & de klerk (2019), who believe more than 66% of international tourism markets are tourists from europe and the americas who fall into the senior age category with access needs. in 2016, the tourists mentioned above spent r20 billion on leisure, accommodation and food in south africa (haarhoff & de klerk 2019). many international and local people amongst the 50+ age group have access needs, similar to disabled people. yet usually, such people do not prefer to be ‘labelled or identified’ as disabled people. table 1: examples of countries (sa and the international tourism market) that have pro-disability legal tools. on the one hand, south africa strives to adhere to such standards as the united nations convention for the rights of persons with disabilities of 2006; the sustainable development goals of 2015, which are supported by the constitution of 1996; and other domestic legislative frameworks like the white paper for the rights of persons with disabilities of 2016 (see table 1 below). additionally, south africa understands diversity in socio-economic settings (meyer & meyer 2020). amongst the african countries, south africa has indicated an interest in the accessible tourism market as a matter of business, legal compliance and social value and cohesion (department of tourism report 2011). the department of tourism has established a transformation committee with designated positions from the south africa disability alliance. in addition, the tourism grading council of south africa has developed a disability inclusion framework for the accommodation sector in collaboration with the south africa disability alliance. according to haarhoff & de klerk (2019), south africa serves international markets from countries with pro-disability inclusion legislation, hence posing the need for research in tourism, impairment and disability, considered a composite field of study (see also table 1 below). table 1 presents a list of examples of countries that are tourist source regions for south africa and which have a legal position that advocates for disabled people. if south africa relates to such states, the current authors believe that it is noble for south africa to embed disability inclusion within tourism practices, thereby bringing the role of research to filling the research inconsistencies on impairments and disability issues within south african tourism and beyond. therefore, the current study identifies areas previously researched and then provides information and/or gaps to enable the research community to conduct a more in-depth investigation and/or investigation on areas that have not yet been covered. on the one hand, it is critical to take note of the relationship between impairments, disability and ageing, since approximately 53.0% of the global population live with a declared temporary and permanent impairment and have a propensity to travel (travability 2018; disabled world 2016). on the other hand, global statistics record that 10% – 20% of the global population has a declared impairment (darcy et al. 2020; united nations development programme 2018). in south africa, 7.5% of the south african population comprises the disabled population group (statistics south africa 2014). the point here is, generally, at one point in life, one can acquire a form of impairment due to life incidences such as ageing, short-sightedness, pregnancy, accidents or being born impaired, amongst other causes (luiza 2010). however, the intensity and experiences of disability always differ. all the persons mentioned above share tourism access needs. however, the emphasis and the context of acceptance, discrimination, stereotyping and marginalisation by society and the co-created tourism economic environment may differ (makuyana & du plessis 2022; kazou 2017). this implies that individuals experience diverse types of discrimination as per the societally and economically perceived level of the impairment whenever they participate in socio-economic activities like tourism (travability 2018; disabled world 2016). the discussion above reinforces the need for research on the composite concept. terms and definitions disability is defined in this study as an interactive process between an individual with an impairment, the environment and the impairment at intrapersonal and interpersonal dimensions (makuyana & du plessis 2022). in this context, impairment is considered an act of god that brings about a loss or deformation of a ligament or body part (chikuta 2015a; makuyana & saayman 2018). access needs refer to the willingness and ability to be involved and/or participate in opportunities offered to all humans for tourism that upholds universal accessibility approaches (makuyana & du plessis 2022; nzo 2019). universal accessibility and/or disability inclusion refers to the inclusion of disabled people by any means which upholds one’s right to dignity, independence and choice to partake in all available opportunities or effective participation on an equal basis with nondisabled cohorts (makuyana & du plessis 2022; darcy et al. 2020). accessible tourism is the same as disability tourism and inclusive tourism, which implies the access needs of all people with a desire to participate in tourism regardless of the presence or absence of impairment. the terms mentioned above are used interchangeably, depending on geographical location (darcy 2010; buhalis & darcy 2011). design the narrative literature review focused on the interconnection between tourism, impairments and disability from high-ranked databases that prefer developed countries (global north) whilst taking cognisance of developing countries’ journals. the electronic search is done as a gap analysis that would provide answers to the following questions: what is the magnitude of research on tourism supply positioned in the context of inclusion of impairments and disability in south africa and beyond? what lessons can be learned from existing research on tourism products and service development incorporating impairments and disability? to what extent does existing research embed tourism education (skills development) that incorporates impairments and disability for inclusive tourism growth? is there research on the influence of technological developments on tourism, impairments and disability for effective participation amongst disabled people? is there research (knowledge development) on impairment, disability and tourism as a combined concept for inclusive tourism growth in south africa and beyond? data collection the researchers conducted a literature search from the following electronic databases: scopus, sciencedirect, sabinet online, emerald insights journals, african journals and google scholar. the electronic search used keywords like inclusive tourism, access-needs in tourism, disability, impairment, tourism and related synonymous terms. a balance of five regional (continental) journals with full text written in english were considered in the review. on the one hand, predetermined inclusion of sources of data entails published research work on tourism, impairment and disability issues. on the other hand, predetermined exclusion criteria entail nonacademic and scientific work on tourism, impairment and disability issues, as separate fields of study were considered during the literature screening process, as shown in table 2. table 2: review inclusion and exclusion criteria. table 2 shows an objective electronic literature search guide as part of the reviewing process. the current article is an element of the unpublished primary (phd) study by makuyana (2020). the review paper would be published for the tourism, disability (academics and scholars) research community, practitioners and general readership to have access to the information beyond being kept in the university’s repository. data analysis the first and second authors independently reviewed each identified data source to determine eligibility and extract study information. the third author validated and verified the collected data whilst preparing and refining the article to make it ready for publication. figure 2 shows the volume of studies identified, screened and included or excluded at each stage of study selection. all collected data were categorised into themes answering the research questions, as advised by miles and huberman’s (1994) qualitative analysis approach. figure 2 shows that the researchers retrieved data and adopted three steps. firstly, an electronic literature search and second screening of research material from the 1990s to 2018 was conducted. the researchers followed vergnes et al. (2010) by grouping the codes into themes, which established a scientific way of synthesising a plethora of information after exhaustively searching and objectively analysing (reduction and exploration of text) the studies dealing with tourism–impairments–disability issues. as reflected in figure 2, research work in text format was gathered after reading the titles and abstracts. full-text reading ascertained the alignment with the aim of the current review. all materials which addressed tourism, disability and impairments separately and work that was not on open access were discarded. figure 2: summary of data collection, screening and analysis process. secondly, data were extracted, and thirdly, data were analysed manually following a thematic approach as advised by miles and huberman (1994), and in vivo coding was also carried out (holton 2007). the questions calling for narratives were subject to inductive or deductive thematic analysis, using in vivo open coding as manning (2017) advised. examples of questions subject to inductive analysis: what is the magnitude of research on tourism supply positioned in the context of inclusion of impairments and disability in south africa and beyond? what lessons can be learned from existing tourism research on products and service development that has incorporated impairments and disability? examples of questions subject to deductive analysis: to what extent does existing research embed tourism education (skills development) that incorporates impairments and disability for inclusive tourism growth? is there research on the influence of technological developments on tourism, impairments and disability for effective participation amongst disabled people? is there research (knowledge development) on impairment, disability and tourism as a combined concept for inclusive tourism growth in south africa and beyond? this technique involves meaningful units of texts or codes being extracted, kept in a master list and reapplied to similar segments of text. codes were also transformed into dummy variables in microsoft excel (for each code: 0 = not mentioned, 1 = mentioned in the extant literature) to represent code frequencies illustrated in numeric tables and percentages (quasi-statistics). results the article aims to track knowledge development from 1990 to 2018 whilst justifying future research areas which would have been previously overlooked and under-studied within a tourism–impairments–disability perspective in south africa and beyond. the findings are presented first to show the geographical or geospatial distribution from a global scope before narrowing it to south african-focused knowledge development. this is because of the interconnection of tourism co-created supply, demand and internationalisation of research and skills development. data distribution within the electronic databases (sources) a total of 300 articles were reviewed, and only 102 articles from the four databases were used. the databases enabled access to 18 tourism and/or hospitality-related journals that had 55 articles and 11 journals unrelated to tourism–impairments–disability that had 40 articles. these were augmented by one tourism encyclopedia, three european and international organisational reports and one university repository that had two phd theses, two master’s dissertations and one handbook, as shown in table 3. table 3: sources of data used for this study (in alphabetical order). table 3 records the distribution of tourism, disability and impairments as disaggregated by subject, namely tourism–impairments–disability, from 34 sources. however, the research revealed that scientific tourism-related journals have not yet regarded the tripod concept, namely tourism–impairments–disability (where impairments include health conditions), as one of their central research foci or themes. tourism and hospitality sources contributed 51% of the data, whilst non-disability-related sources contributed 34%. a university repository and encyclopedias on tourism were 3%, whilst european organisational reports provided nine percent 9%. table 2 highlighted the 44% (general percentage distribution) of tourism, disability and impairment literature data relevant for this analysis and reviews: 11.7% of the articles were published through the tourism management journal, followed by annals of tourism channel view publications publishing 7.8% of the articles and cornell hotel and restaurant administration quarterly publishing 5.9% of the articles, whilst 4.9% were published by african journal of hospitality, tourism and leisure, journal of hospitality, tourism management and ossate, respectively; 3.9% were published by review of disability studies, the north-west university repository and international journal of contemporary management, respectively. identified themes and subthemes the analysis established five themes, namely: tourism demand: disabled people (tourists) tourism supply: inclusion of disabled people (tourists), impairments and health conditions and disability technological influence on tourism, impairments and disability education and skills development tourism-inclusive practices (generic knowledge and theoretical and literature base). the themes had subthemes as follows: tourism supply had seven subthemes, namely heterogeneity, inclusion, reasonable accommodation, know-how, managing experiences during co-consumptions and co-production and product and service innovation. tourism demand: disabled people (tourists) had three subthemes: escapism, relaxation and recreation. education and skills development had two subthemes, namely empowerment and self-development. tourism-inclusive practices (generic tourism knowledge) had subthemes like involvement and participation. tourism demand: disabled people (tourists) the results are clustered under tourism demand, impairment and disability. table 3 and table 4 summarise the knowledge distribution by country and continent where the study was conducted. from the view of tourism demand, five studies covered the whole of europe, including spain, poland and the czech republic. six studies focused on the asia-pacific region, including studies that focused explicitly on taiwan, south korea, india and china, whilst others focused on the united kingdom and middle east (jordan), respectively. two studies regarded australia, both americas and africa (south africa) individually. table 4: research on tourism demand, impairments and disability and disabled tourists (in sequential order of years, from 1997 to 2018). table 4 indicates available knowledge in the type of collaborations amongst authors. on the one hand, seven studies were conducted by two researchers (co-authoring), whilst others were conducted by three researchers (co-authoring). on the other hand, five studies were undertaken by single authors. table 4 shows taiwan and south africa had authors who each undertook two related studies on this subject, respectively. the rest of the studies were one-off investigations into disability, implying that there is low interest in studying disability and tourism as a combination of two fields. table 4 shows 1997 as the genesis of research interest in disability and tourism demand in europe from a generic european perspective. table 4 indicates a break in research from 2000 to 2001, when the tourism and disability agenda was raised from a demand perspective. it presents 2006 as a year when research on tourism demand and disability resumed after further research silence. according to table 4, a five year silence lasted until 2011. table 4 shows 2011 to 2018 as having an exponential positive interest in developing knowledge on tourism (including attractions and activities), hospitality (accommodation) and disability and disabled persons as combined fields. according to table 4 above, between 1997 and 2000, research was skewed towards the subtheme of inclusion (universal accessibility) of disabled people (ageing people included) in tourism. in 2001, the research considered barrier-free (disabling environment alleviated) tourism for disabled people. in the same year, behaviours of tourism consumers with mobility impairments were documented. table 4 presents 2006 as the year researchers identified determinants and constraints within the tourism demand side. table 4 shows 2011 as the year that witnessed a widened focus to include identifying the needs, motivations and expectations of disabled tourists. according to table 4, 44% of the literature concentrated on barriers and challenges and constraints faced by persons with different impairments. twenty-two percent of the demand-skewed research focused on the motivations of persons with impairments (disability). seventeen percent of studies concentrated on persons with impairments’ needs and expectations. competitiveness of accessible destinations, the role of persons with different impairments in co-creation and consumer behaviour received 6% of the research attention, respectively. finally, table 4 presents a distribution of methods of research, which was skewed towards qualitative methods with 67%, a quantitative research approach with 11% and mixed methods with 22%. tourism supply: inclusion of disabled people, impairments (health conditions) and disability the research positioning the tourism supply side in relation to disability and impairments knowledge (research) as of 2018 is presented in table 5 below. table 5: the tourism supply: inclusion of disability, impairments and disabled people in sequential order of years from 1990 to 2018. table 5 shows 35 research items, revealing country and continental distribution of tourism supply-oriented research that considered disability and impairment issues as: (1) australia (oceania) accounts for 17%; (2) asia in general accounts for 9%; (3) the united kingdom make up 14%; (4) canada accounts for nine percent 9%; (5) turkey, denmark, spain, portugal and poland plus europe in general have a combined aggregate of 23%; (6) zimbabwe accounts for three percent 3%; and (7) global tourism in general adds up to 26%. table 5 shows a limited (if not a lack of) interest in tourism supply and disability until 2000. uninterrupted growth in research output was witnessed after 2005, although 2006 and 2007 present a break in research in this regard. however, there was consistent research on tourism supply and disability from 2007 and 2008 until 2018. table 5 reflects the distribution of tourism supply and disability research; however, it is dominated by 57% of single authorship. articles with two and three co-authors have 20% each, respectively, whilst articles with four authors have 3% only. thus, authors like darcy, groschl, chikuta, visit england and united nations world tourism organization (unwto) have recurring tourism and disability-oriented research from the supply-side perspective (see table 5). the findings reflect tourism and disability studies within the supply-side as considering ageing as one of the major tourism market segments. this concurs with the world travel tourism council report (2017) that highlighted that amongst the international visitors for the past decade, more than sixty-six percent (66%) fall into a senior market that prefers accessibility in co-producing and/or co-consuming tourism products and services as the disabled people. the above discussion is in the context of the growth of accessible tourism which scholars regard as having three times the growth rate of disability-exclusive tourism. this is because of the ageing and retiring baby boomer generation, which dominates the demographics of most of the global north (travability 2020). travability (2020) cites research by mckinsey and company in the united states of america (usa) that found that the baby boomer generation controls 60% of total wealth, and 40% of their total expenditure is in areas such as hospitality and leisure amongst 50% of the population segment. in addition, the said population segment, at age 65, has 40% of the cohorts with an age-related disability, and by age 75, it rises to 60%. it is apparent that the ones without declared impairments and the support structures of the counterparts with declared impairments prefer the usage of universal accessible facilities foregoing exclusive ones (travability 2018). such travel characteristics are observable among the majority if visitors to south africa as a tourism destination (makuyana & du plessis 2020). the studies on tourism supply and disability were undertaken between 1990 and 2018 and considered a variety of tourism sectors: the general tourism industry had 57.0%, the accommodation sector only had 14.0%, the hospitality sector (accommodation and hotels) had 2.9%, tourism only had 2.9%, food and beverage had 5.7%, travel only had eight comma six percent 8.6%, leisure and accommodation had 2.9%, accommodation and travel had 2.9% and travel and leisure had 2.9%. an interesting aspect highlighted in table 5 is that the year 2000 ignited greater progressive research on access needs (disability) of the tourism market and supply chain. tourism supply: disability inclusion and impairment issues in products and services development table 6 reveals that knowledge of disability and tourism can contribute to man-made and natural tourism products and service development and innovation that embraces the diverse needs of tourism market segments. within this context, the current researchers classified such literature under research aligned with the tourism products and/or services from 1990 to 2018, which is presented in table 6. table 6: research on tourism products and services that accommodates disabled people (in sequential order of years). table 6 presents 2002 as the landmark year for tourism research that focused on the needs of disabled people from a tourism and hospitality product and service development perspective. according to table 6, a two year research gap appeared until 2004; another 2 years of research silence was observed between 2004 and 2006. this was followed by another one year research break between 2009 and 2010, and then a 2-year gap occurred again between 2010 and 2012 (see also table 6). table 6 presents a three year research gap. nevertheless 2015 had a consistent flow of research until 2018. table 6 presents 21% of the research themes skewed towards tourism product development. whilst 29% of studies within the said period focused on experiences of the disabled tourist during co-production and co-consumption of tourism products, only 7% of the studies established a nexus between disability and tourism products and services. within this tourism product or service-centred research, accessibility to information had 14%, whilst universal accessibility received 29% of research attention. table 6 shows the inclusion of disabled people within the different types of tourism services and products in different continents and countries. thus, according to table 6, oceania had 40% of the research output, whilst europe had 33%. table 6 presents america and africa with 13% research attention, respectively. within this continental view, 36% of the research used australia as a case study, 7% adapted america, 21% of research used the united kingdom and europe and africa contributed 14% of the case studies, respectively. technological influence on tourism, impairments and disability the results revealed that tourism, like any other sector, has been continuously affected by the internet of things, amongst other technological advancements that enhance business efficacies if harnessed strategically. thus, as highlighted in table 7, disability-tourism studies reflect either the adoption or proposition of technological innovations, communications (marketing and public relations included) and intrapreneurial and entrepreneurial approaches that can take advantage of technology for a wider reach to disabled people. these can enable them to have better access to participate in tourism and hospitality. table 7: research on the technology development of disability tourism (in sequential order of year, from 1990 to 2018). table 7 shows a trend in studies that focused more on the continental level than on the country. according to table 7, studies from 2005 to 2012 were 83% focused on europe and 17% on australia. nonetheless, table 7 shows a research gap in the nexus of tourism and disability influenced by technological development from 1990 to 2005. however, as mentioned earlier, research interest was reignited in 2005 and 2006, with a break between 2006 and 2008 (see table 7). a research gap was observed from 2008 to 2011, followed by two years of continuous research between 2011 and 2012. after 2012, there was research silence on technological development in tourism and disability until 2018. the results reveal an interesting aspect of the exponential growth of research on technological advancements for tourism and disability, followed by research silence. on the one hand, a trend towards a collaborative research approach is preferred to single authorship, and only one solo author conducted research in the period under investigation. table 6 shows that all studies adopted a qualitative research design. tourism education (skills development) on impairments and disability (inclusion) table 8 presents the findings that tourism competencies and/or education incorporate disability. according to table 8, from 1990, there has been a shortage of tourism education or skills development research oriented towards health conditions or acquired impairments and disability inclusion from an afrocentric perspective. nonetheless, it is not until 2018 that south africa (africa) recorded 20%, slovenia (europe) recorded 60% and the world in general recorded 20%. table 8 fosters the view that skills development informs and enhances know-how to prepare learners to manage and engage disabled counterparts in tourism. table 8: research on tourism education and/or skills development, impairments and disability. table 8 reveals a preference for co-authoring amongst the researchers, as in previous themes. it is observed that after 2003, there was a seven year research silence on tourism skills development relating to disability for the tourism value chain in general (see table 8). in 2010 and 2011, the same authors investigated attitude changes of students undergoing tourism skills development towards disabled guests. such research reflects co-creation that places the role played by formal skills development as critical in the co-production and co-consumption of tourism and hospitality practices. table 8 presents a three year research silence between 2011 and 2014. however 2014 broke the silence for a moment, and the aftermath witnessed a research break again until 2018 (see table 8). table 8 highlights that europe is making strides in disability and/or accessible tourism-related skills development or education research. nonetheless, there is still a need to develop more integrated tourism–impairments–disability knowledge within the contexts of individual countries (see table 8). on the one hand, table 8 shows limited research attention on tourism, impairments and disability as a composite concept within the formal human capital-capacity development in africa, especially south africa. table 8 reflects implications that can emerge from the lack of professional capacity to manage and/or handle learners with impairments amongst tourism educators (makuyana & du plessis 2022; makuyana & saayman 2018; scott, mcguire & shaw 2003). it goes without saying that the said gap fosters challenges in the capacity and capability of the tourism and hospitality roleplayers (practitioners) when serving disabled tourists (guests) within the tourism value chain (breedt 2007; chikuta 2015a; makuyana & du plessis 2022; snyman 2002; see also table 8). the findings implicate the tourism and hospitality workplace readiness and know-how on disability inclusion as part of diversity management practices. the research on general tourism, disability and impairments issues table 9 presents generic tourism, disability and impairments research within the tourism business system that thrives as a co-creation economy. table 9: results of general tourism literature on disability and impairment issues (from 1990–2018). table 9 indicates that 50% of the tourism research and disability followed a general eurocentric perspective. in addition, italy and greece h ave a combined a contribution of 25% to the above mentioned theme. australia (oceania) has 15.6%, while the american contributed 9.4% (including brazil and canada as case studies) to tourism and disability knowledge. table 9 shows a trend towards co-authoring, which upholds collaborations and diversified views on tourism and disability inclusion. thus, studies conducted by more than two researchers constituted 59.5% against single authorship at 31.3%. however, 9.4% of the extant literature does not indicate who the authors are. table 9 shows authors with a single research interest as composing 28.0% of the extant literature instead of 72.0% of researchers who have repeating research interest in this regard. the authors with recurring research interests in tourism and disability include researchers such as buhalis, darcy and rains. an interesting aspect here is that the mentioned authors furthered tourism and disability studies in a way that encourages in-depth research to build knowledge and understanding of disability. thus, exploratory research on the needs and motivations of mobile-impaired persons was undertaken in 2003 (see table 9). the said study probed for a more extensive investigation to uncover the magnitude of disability beyond physical built environmental access (see table 9). table 9 reflects a change of focus from the consumer to the non-disabled and disabled staff to relate disability and work-production within the tourism and hospitality industry. case studies were used to bring a progressive narrative about the inclusion of disabled people in tourism (see table 9). the existing research has combined disability and tourism, leaving impairments or health conditions related to tourism because disabled people are heterogeneous, just like their nondisabled counterparts. discussion, contribution, implications and recommendations the study reflects learning that the composite concept is still scarce, and the extant literature is skewed towards exploring the said concept within countries in the global south, especially in south africa. this seems inadequate to inform the tourism and hospitality co-created economy to understand and interpret disability and impairment related to production within a demand, supply and skills development perspective. darcy (2010) and darcy et al. (2020) have similar views and encourage in-depth research on different impairments in relation to tourism and disability inclusion. it is clear from the findings that the composite concept (disability, tourism and impairments or health conditions) has not yet been regarded as one of the main themes of tourism, hospitality, recreation and leisure in the academic journals and scholarly knowledge development space, especially from a country-contextualised course between 1990 and 2018. therefore, this implies that in all identified themes such as tourism demand, supply, skills or human resources development (education), technological development and general tourism spaces, there is a need for collaborative research partnerships between tourism role players, organisations for disabled people and researchers for a contextual understanding of universal accessibility and reasonable accommodation (disability inclusion). based on the results, it is clear that the article can contribute by identifying gaps, though in an abstract form. the research community can regard the gaps as part of the research agenda for future studies. accordingly, the findings reflect a need to develop knowledge on: characteristics of disabled tourists (different types of impairments or health conditions) using age, gender, economic participation, consumer and/or buying behaviour and those who experience disability (including the elderly) travel behaviours of disabled tourists contextual relevance of universal accessibility in tourism sectors beyond the built environment, such as attitudes, diversity management and organisational culture competencies (informal and formal or curriculum-based skills development) for sustainable know-how to manage and/or handle disabled people in tourism sectors definitions of disability inclusion and reasonable accommodation for participation in tourism and the hospitality value chain geospatiality and movement of disabled people (tourism sources and receiving regions) for destination management and competitiveness within accessible or inclusive tourism the economic value of disability inclusion, whilst disaggregating such by age, type of impairments and access needs amongst other ‘special requests’ set by tourists who participated in tourism, thereby making better market segmentation within the tourism supply and demand value chain interpretation of disability legislative frameworks for tourism and hospitality practices and contextualised inclusive socio-economic development (community-based development included) tourism and hospitality co-created innovation induced by disability inclusion (tourism for all) human resources policy and practices to acknowledge disabled people as potential sources of labour for employment (selection, recruitment, retention, talent and diversity management) employment and employability of disabled people in tourism and hospitality co-created economy, including work readiness, inclusion in the workspace, production and productivity and an inclusive labour market tourism and hospitality-inclusive market research and marketing communication inclusive tourism and hospitality management (practices, principles, planning, budgeting, economic empowerment index, information technological advancement and usage of such data for social and economic innovation) readiness of the tourism and hospitality co-created economic development for accessible tourism and how the multifaceted industry is prepared for the evolving concept of ‘tourism for all’. the postulated research fields for the composite concept imply that the authors recommend the different organisations for disabled people to be open to dialogues with tourism roleplayers (education, industry and community) to bring a clear interpretation of inclusion in the lens of socio-economic production, co-creation and types of impairments and/or health conditions without compromising heterogeneity or their beneficiaries. for example, south africa has the south africa disability alliance, composed of 15 organisational members with databases that can foster the continuation of research to bridge the gaps identified in this current research. the above recommendation shares similarities with darcy et al. (2020), luiza (2010) and unwto (2020), as they believe accessible tourism is critical as one of the avenues to tourism recovery amidst and after the covid-19 pandemic. the study reflects potential benefits and strengths to uphold community cohesion if inclusive or accessible tourism is built on a composite concept. research would develop sustainable fundamentals to enable tourism skills development to mainstream disability proficiency as part of a curriculum outcome. research that upholds impact assessment can fulfil a need for knowledge, willingness and buy-in amongst internal and external tourism and hospitality stakeholders to appreciate disabled tourists beyond a niche market. the abovementioned factors implicate investment decisions and business strategies within the tourism-disability space. conclusion this study concludes that the extant literature explored disability and tourism perspectives that are inadequate to make the tourism and hospitality co-created economy understand disability inclusion in the context of tourism growth. impairments or health conditions were not part of the existing discourse between 1990–2018. therefore, there is a need for in-depth research to enable skills development to embed disability inclusion from a composite concept. learnings were determined from gaps in extant literature within tourism supply, demand, technological influence, skills development and general tourism sectors. nonetheless, research attention differs amongst researchers and the context of the countries and continents. overall, the tripod concept of tourism, impairments (health conditions) and disability is still under-researched. one can say it is still at the infant stage, as existing knowledge is still too generic and has only ‘scraped the surface’ issues of disability, thereby leaving tourism stakeholders in a dilemma when intending to implement inclusion. yet research is an imperative for an evidence-based argument towards systemic inclusive or accessible tourism, particularly within the areas identified by the study, namely demand, supply, skills development, technological influence and general tourism sector knowledge. research is needed in the areas mentioned above to fill the gaps whilst liaising and engaging disability-concerned organisations. this article contributes to mapping a field of research, synthesising the state of knowledge and creating an agenda for further research whilst providing the historical overview and timeline-based milestones in research on impairments, disability and tourism as a consolidated concept. therefore, the limitation of the study is centered on lacking an empirical approach that would augment the review of extant literature for a limited period (1990–2018) only. acknowledgements the authors would like to acknowledge the contribution from the national council of and for persons with disabilities, blind south africa and all participants with their collaborative participation that made the study a success. competing interests the authors have declared that no competing interest exists. authors’ contributions t.m. conceptualised the idea, methodology, formal analysis, writing of the original draft, visualisation and project administration. e.d.p. and o.c. were part of the supervision of t.m.’s phd thesis, from which the article is developed, and reviewed and edited this article. ethical considerations ethical approval to conduct this study was obtained from north-west university’s education, management, humanities and social sciences research ethics committee (emhs-rec) in 2018. funding information the research received no specific grant from any funding agency in the public, commercial or not for profit sectors. data availability the authors confirm that the data supporting the findings of this study are available within the article. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references adukaite, a., van zyl, i., er, ş. & cantoni, l., 2017, ‘teacher perceptions on the use of digital gamified learning in tourism education: the case of south african secondary schools’, computers & education 111, 172–190. https://doi.org/10.1016/j.compedu.2017.04.008 allan, m., 2013, ‘disability tourism: why do disabled people engaging in tourism activities’, european journal of social sciences 39(3), 480–486. bindu, v.t. & devi, k., 2016, ‘accesible tourism: determinants dan constraints; 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disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper thirty years of a proud link with prof. leslie swartz valerie sinason received: 20 feb. 2025; accepted: 23 may 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. on 09 august 1993, over 30 years ago, i and my colleagues were excited when i received a fax from professor leslie swartz, director of the university of cape town (uct) child guidance clinic. i was 47 years old at that moment and a consultant child psychotherapist at the tavistock clinic in london where i ran what was then known as the mental handicap workshop. terms used for intellectual disability change every few years in countries all around the world. it is when a subject is unbearable that there is pressure for a change of terms in the hope that the new words will bring progress with them. i was part of a very small, passionate and active international group of professionals who were pioneering psychoanalytic psychotherapy for children and adults with an intellectual disability. although our small group had psychoanalytic training and understanding, we were open to and inspired by all work which focussed on the rights of children and adults with an intellectual disability to be heard and enabled. it was also 2 years after my book mental handicap and the human condition; new approaches from the tavistock (sinason, 1992) was published by free association books in the uk and usefully became an extra international contact point for those involved in this work, with sweden being the first country to approach us. slowly we had contact with other countries in scandinavia and the next change happened, thanks to the belgian psychoanalyst johan de groeuf. through him, we were able to add a further handful of passionate practitioners from france, germany, the netherlands, greece and italy. all together we only amounted to 30 or so people who met yearly and we worked hard at producing books and papers and conferences. we had not had any contact with africa. at that stage, 35 years ago and just before nelson mandela’s release from prison, there was little concept of people with an intellectual disability being able to make use of any treatment, let alone a talking treatment. so, the fax from professor swartz stating that he, professor chris molteno, and trevor lubbe (a south african child psychotherapist now sadly dead) were seeking british council funding for me to come and give lectures on abuse and disability was profoundly meaningful. he added ‘many of us (including me) are very excited by your work and are most keen to have the benefit of your input here’. the funding was agreed and my first visit was a life-changer. whatever it was i had the honour of imparting, i received back tenfold. such powerful and moving lessons were learned by me under the rigorous, compassionate, loving, decolonial and non-hierarchic umbrella of leslie swartz. he was and is a powerhouse of energy, kindness, strategy, person-centred relationships and brilliance. a very rare combination. indeed, i felt such energy and joy in my visits that the numbers of events i could take part in increased each year. for my second year, historically just after the release of nelson mandela, leslie pointed out that the 48 engagements i had carried out amounted to two years of lectures. the second-year visit melted into the third-year one and each year my holiday break was spent in south africa until the coronavirus disease 2019 (covid-19) pandemic and my husband’s illness, stopped my travelling. my south african ‘professional’ family and i have now known each other for 30 years and i remain deeply impacted by the remarkable work going on there. for the first report i was asked to write to the british council. i could say that under the leadership of professor swartz the cape town child guidance clinic was outstanding for its leadership, its highly skilled and dedicated senior staff and deep personal and professional community commitment. it offers an unrivalled training for the small number of high calibre postgraduate students it can take on. it provides work placements and supervision that will ensure south africa gains the clinicians it has desperate need of as well as strengthening community resources. clinic staff had an anti-apartheid ethos and vision long before it was politically safe to do so and this showed in the attention given to multi-cultural work. respect for the intolerable living conditions people faced in the townships did not turn into a ‘soft’ acceptance of abusive structures. my father, the late and deeply missed professor stanley solomon segal (obe), who was the reason children with disabilities went to school instead of hospital in england, was so moved by the work the university of cape town child guidance clinic did that he discussed their work with his organisation, the council for special education, which awarded leslie and the clinic an international award for the fine work done. my colleagues and i all realised from the very start that we were being privileged in the contact being made. leslie made sure that i provided supervision and teaching each year for the postgraduate students so that they had an update on psychoanalytically informed work for individuals and groups of patients who were abusive victims and lived with intellectual divisibility, whatever their previous theoretical background. in fact, when i look at the huge range of talks, consultations, supervisions and conferences i took part in over 30 years, you can see the brain and heart of leslie swartz behind it all. we shared a view that whatever our own theoretical and professional allegiances were, they were secondary to the wider needs of children and adults who had been stigmatised and unheard. as a yearly resource, leslie generously arranged for other groups to meet me, all united by our determination to provide better resources for this group of citizens. however, although i had the honour of working in so many hospitals, universities, clinics, townships and with organisations and individuals who cared about abuse and disability, it was the uct child guidance clinic that remained my first port of call and i was thrilled to be made an hon consultant psychotherapist. what i learned from leslie at the same time was a decolonial way of teaching. students who visited townships had the instructions to find out what help might be useful for the individuals and groups bravely trying to create grassroots help with poverty, domestic abuse, alcoholism, and rape. there was never any imposition of a ‘you need this and you don’t need that’. i was profoundly moved and impressed and took this back to the uk. it was of no surprise that leslie had also taught his reception staff to say hello in xhosa and made the clinic as welcoming as possible for all. later, he completed university courses in zulu. in the first meetings between clinic staff and township groups, leslie and his staff had a range of ice-breaking exercises to both enable the students to understand environmental differences, levels of inequality as well as to introduce themselves in a meaningful way. i recall one particular introductory exercise that had a powerful impact on me and the students. it was an apparently simple introductory exercise. each individual in turn had to begin with the following words and complete the sentence ‘to get here this morning i had to …’ i will never forget how it could unpack in shocking moments the difference between lives (using pseudonyms for each participant): one student said sweetly: ‘my name is mary [a pseudonym] and to get here today i tidied my bedroom first, had a mug of coffee and put my childhood teddy on an armchair.’ (mary, 22, female) another young woman of about the same age from the township said: ‘my name is ola and to get here i had to get through the taxi wars and leave my baby with my mother in transkei. i hope she is safe. i hope i can travel back safely.’ (ola, 24, female) leslie not only absorbed the key psychoanalytic concepts around intellectual disability with great ease, he put different issues of inclusion into effect by employing a lecturer and group therapist with a visual disability, professor brian watermeyer, now a leading international figure in this field. this brought issues of disability right to the front. another key colleague of leslie, dr bev dickman, taught prosecutors how to work with people with an intellectual disability so that cape town had a much higher level of success in prosecuting perpetrators of abuse of people with an intellectual disability than the uk. it is hard to convey how professor swartz stood for rigour and the highest level of research presentation, writing and thinking and yet at the same time had humour, compassion and an attachment-based way of learning, teaching and being. his moral compass was impeccable and he managed to deal with the harsh external inequalities while never underestimating what could be done internally either. if i was shocked by the brilliance of the work going on, he was shocked by the praise i expressed. he made it clear in those first post-mandela years that some white visitors to south africa came in a patronising way, under the idea that they were educating the poor clinicians who did not have access to the latest thinking and then behaved in quite an authoritarian way. he and his colleagues had not only had to initially contend with unequal and poor resources, then at the university of cape town, but also ‘help’ that was unhelpful. however, the opening of borders with mandela’s presidency meant the gifts in south african teaching could be shared with and acknowledged by ‘the wider world’. i was proud to be a part of that. when iassid, the international association for the scientific study of mental deficiency held its 13th world conference in south africa, i was thrilled to curate a ‘learning from cape town’ evening. the five presentations at the evening included professor leslie swartz, who was then head of the psychology dept at stellenbosch university and working through partnership with the southern african federation on disability (safod). the others, all met through my work with leslie, were nokuthula shabalala, bev dickman, susan manson, janine hundermark and gill douglas, and, of course, brian watermeyer who considered the many themes and dynamics around physical and learning disability from the position of dealing with his own visual disability. a gift from leslie is the equal two-way process with which he approaches all relationships. from his own life and his disability work he had a deep awareness of the negative power of shame in people’s lives. this shame came from feelings of being negatively stigmatised through difference, whether over cognitive, physical, emotional, religious, racial or sexual difference. leslie had a strong desire to lessen this toxicity in everyone he met. having recognised brian watermeyer’s gift at honing his own lived experience at a time when the term ‘lived experience’ was in its infancy, he then himself wrote about the impact of his father’s disability and then his mother’s illness and dying. in typical fashion, his perfectionism meant that his memoir of his mother’s life was done through a phd. it was in 2020 he gained a phd in english studies at stellanbosch university. his dissertation memoir ‘how i lost my mother, a story of life, care and dying’, 30 years after his first phd. it was published in 2021 by wits university press. it included the socio-political aspects of care with a privileged white woman being cared for by a poor black woman as part of the personal memoir. at a time when internationally we have been disappointed in the private behaviour of leading figures it is also a tribute to leslie that he is the same consistent person personally and professionally, in his academic writing and his personal writing. those of us who were first reached out to by leslie in his wish to aid his country to the best he could, now watch in amazement at how his work has extended across africa, united nations, america and europe with research, papers, thriving students and colleagues way beyond our initial european horizons. ‘so there are ants on my computer! this is africa’ he would smile and every situation, literal and symbolic, would receive that benign acceptance. ‘shame!’, he would add, with a warm smile that de-shames everyone. acknowledgements competing interests the author declares that no financial or personal relationships inappropriately influenced the writing of this article. author’s contribution v.s. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the author is responsible for this article’s results, findings, and content. reference sinason, v., 1992, mental handicap and the human condition: new approaches from the tavistock, free association books. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) lionel sakyi ghana somubi dwumadie (ghana participation programme), accra, ghana lyla adwan-kamara ghana somubi dwumadie (ghana participation programme), accra, ghana kenneth a. ae-ngibise ghana somubi dwumadie (ghana participation programme), accra, ghana research and development division, ghana health service, kintampo health research centre, bono east region, ghana crick lund centre for global mental health, health service and population research department, institute of psychiatry, psychology and neuroscience, king’s college london, london, united kingdom department of psychiatry and mental health, alan j flisher centre for public mental health, university of cape town, cape town, south africa citation sakyi, l., adwan-kamara, l., ae-ngibise, k.a. & lund, c., 2025, ‘acceptability and perceived impact of a mental health and disability programme in ghana’, african journal of disability 14(0), a1659. https://doi.org/10.4102/ajod.v14i0.1659 original research acceptability and perceived impact of a mental health and disability programme in ghana lionel sakyi, lyla adwan-kamara, kenneth a. ae-ngibise, crick lund received: 13 jan. 2025; accepted: 19 june 2025; published: 22 aug. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: ghana somubi dwumadie aimed to improve wellbeing of people with disabilities, including people with mental health conditions, through four pillars: strengthening policies and systems; scaling up integrated, accessible mental health services; reducing stigma and discrimination; and generating evidence to inform policy and practice. despite these efforts, its implementation has not been comprehensively evaluated. objectives: to assess the programme’s acceptability and perceived impact from the perspective of key stakeholders, including government, civil society organisations, and grantees. methods: a process evaluation, guided by the programme’s theory of change, involved in-depth interviews with 32 stakeholders from programme partners, civil society and government. document reviews supplemented data collection, and thematic analysis identified key insights. results: stakeholders highlighted the programme’s technical assistance as crucial for strengthening advocacy and policy leadership in mental health. the integration of mental health services into primary care and the involvement of traditional leaders to reduce stigma were noted successes. challenges included funding instability, gaps between advocacy and service delivery and limited control over implementing key policy reforms. conclusion: ghana somubi dwumadie made significant strides in disability inclusion and mental health care through its multi-sectoral, user-led approaches. addressing challenges like sustainable funding and service delivery will be critical for ensuring lasting impact and scalability. contribution: this study underscores the impact of user-led, multi-sectoral approaches in reducing stigma, scaling services, and empowering people with disabilities in resource-limited settings, while addressing challenges and strategies for disability-inclusive programming. keywords: disability inclusion; mental health; process evaluation; ghana; user-led; theory of change. introduction it is estimated that 16% of the world’s population experience significant disability (who 2022). the number of people with disabilities continues to increase, particularly in lowand middle-income countries (lmics), where it is estimated to be between 10% and 15% of the total population with almost 80% living in sub-saharan africa (mitra & yap 2021). in ghana, people with disabilities constitute 8% of the country’s population (ghana statistical service 2024). people with disabilities face unique daily challenges that impact several aspects of their lives. challenges such as physical impairments, social prejudices and societal limitations prevent people with disabilities from accessing opportunities and resources equally (who 2020). despite ghana’s ratification of the united nation convention on the rights of persons with disabilities (crpd), its participation in the african decade of persons with disabilities and the enactment of the persons with disability act 2006 (act 715), individuals with disabilities in ghana continue to face significant barriers to equal societal participation (crpd 2024). addressing disability, including mental health-related disability, is crucial in achieving sustainable development as it ensures that no one, particularly more disadvantaged people in society, are left behind. the sustainable development goals (sdgs) and its agenda of ‘leave no one behind (lnob)’ emphasise the importance of including people with disabilities in mainstream development (jolley et al. 2018). despite the efforts of the sdgs, real impact and progress for people with disabilities has been minimal (opoku et al. 2019). in response to these systemic challenges, the ghana somubi dwumadie programme was launched as an initiative aimed at improving the well-being of people with disabilities, including those with mental health conditions. with funding from the uk’s foreign, commonwealth and development office (fcdo), the ghana somubi dwumadie programme, also known as the ghana participation programme, hereafter referred to as ‘the programme’: [s]ought to contribute to the overall lnob impact goal, namely that all people with disabilities, including mental health conditions are engaged, empowered, and able to enjoy improved wellbeing, and social and economic rights. (ghana somubi dwumadie 2024) the programme was led by options consultancy alongside partners and stakeholders from january 2020 to september 2024 and aimed to improve the lives of people with disabilities as well as those with mental health conditions. it focussed on four key areas: (1) strengthening policies and systems; (2) scaling up quality and accessible mental health services; (3) reducing stigma and discrimination; and (4) generating evidence to inform policy and practice (ghana somubi dwumadie 2024; zuurmond et al. 2025). what made this programme unique was that it focussed on providing technical assistance to the government of ghana in mental health and disability and also applied user-led approaches. it also delivered quality, integrated, community-based and recovery-oriented services, empowered people with disabilities to reduce stigma and discrimination and produced evidence through research. to date, there are no research publications on the process evaluation of the strategies and methods employed to implement this complex programme. in evaluation terms, a complex programme refers to an intervention that involves multiple components – such as diverse stakeholders, cross-sectoral strategies and different implementation strategies – which collectively influence outcomes (crane et al. 2019). the only process evaluation conducted was by the programme’s consortium partner on district mental health care plans, one of the strategies the programme used (ae-ngibise et al. 2024). taken together, these gaps underscore the need for a systematic examination of the programme’s implementation processes and stakeholder acceptability. this study presents a process evaluation of the programme, focusing on the implementation strategies guided by its theory of change (toc). specifically, we examine the feasibility and acceptability of these strategies based on the perspectives of programme partners, grantees, civil society organisations (csos) and government stakeholders. research methods and design study design theory of change theory of change is an approach that describes the hypothetical steps that need to be taken to achieve planned outcomes (breuer et al. 2016). it illustrates the relationship between the short-, intermediateand long-term results in a causal sequence (de silva et al. 2014). these outcomes, especially long-term outcomes or impact, may not occur until after the programme has ended, making attribution difficult (blamey & mackenzie 2007). the activities or interventions required to achieve the outcomes are developed based on an existing evidence base or the knowledge of the implementers (breuer et al. 2016). the contextual assumptions underpinning the toc are outlined as part of the toc process (breuer et al. 2016) as this helps to understand what may be driving or hindering reaching the outcomes. process evaluation the study used a process evaluation design to evaluate the programme, using the framework of the toc. process evaluation methods provide insight on the implementation and delivery of programmes (skivington et al. 2021). they allow researchers and policymakers to gain a more comprehensive understanding of how these interventions work in practice. by examining the details of how programmes are put into action, we can better identify the specific mechanisms that contribute to their perceived effects (moore et al. 2015). theory of change development an initial toc was informed by the funder’s call for proposals and by the experiences and priorities of programme partners. in particular, the intermediate-term, long-term and overall outcomes were informed by the funder’s wider lnob toc, and these did not change throughout the life of the programme. at the end of the first 6 months of the programme (july 2020), a review of the inception period led to a number of changes to the toc design. in particular, technical assistance to civil society was added as a key input, which the programme team now felt was needed to achieve the overall goal. the strategies being used for the toc were further explained and expanded on, with the addition of inclusive approaches and a consideration of gender, to complement the existing user-led approaches. the inception period review relied on a range of scoping studies and desk research, supplemented by key informant interviews. the toc, especially the assumptions, were stress tested and revised by the programme in september 2020 (options.co.uk 2020). mid-way through the programme, a fuller and more detailed review of the toc was undertaken between november 2021 and march 2022 through an iterative consultative process between programme partners. the review indicated that some elaboration and small adjustments were useful to the programme’s toc visual and narrative. in particular, the toc review also considered whether any adaptive actions should be taken by the programme. the updated toc was thereafter used as: a framework and reference document for seeing how change happens and the rationale for programme strategies and approaches; to support monitoring, evaluation and learning (mel) work by referencing where the programme logframe indicators are already measuring change across the toc pathways; to map partners’ individual evaluation plans for assessing the programme’s results in preparation for the end of term evaluation and for wider communications on programme rationale and underpinning theory. study population and sampling strategy in-depth interviews were conducted with consortium partners, grantees, csos and government agencies who played a crucial role in the implementation of ghana somubi dwumadie. the authors used purposive sampling to recruit study participants. sampling started with a mapping which allocated stakeholders into the following categories: programme partners, government stakeholders in disability, government stakeholders in mental health, csos receiving technical assistance and programme grant recipients. potential interviewees were then sampled from the categories as follows: programme partners: there were five original programme partners who all delivered different elements of the programme, led by options consultancy services ltd., who had overall oversight. the other partners were tropical health, king’s college london, sightsavers and basicneeds-ghana. each partner was written to and asked to nominate participants for interviews, and between one and two people joined each interview. grantees: the programme issued 21 grants across 19 organisations across three grant rounds. because of the limited interaction with the wider programme, potential interviewees were selected based on whether they had more than one interaction with the programme such as: also being a member of the mental health alliance (supported by the programme). having a multi-year grant. being a member of the programme advisory group. three grantees met two or more of these criteria and were invited to nominate participants for interviews, from the following organisations: songtaba, ghana national association of deaf (gnad) and voice ghana (now africa disability institute). in addition, a small grantee in a region without other programme work, and from the final grants round, was selected: duapa mothers union. this was to secure the perspective of a smaller grantee. civil society organisations who received technical assistance under the programme were ghana federation of disabilities (gfd) and mental health society of ghana (mehsog). both were invited to interview; however, it was not possible to arrange an interview with mehsog because of their competing priorities. government stakeholders in disability were identified for interview because of having an agreed technical assistance plan in place with them. this included the ministry of gender, children and social protection (mogcsp) and the national council for persons with disability (ncpd). government stakeholders in mental health were identified initially because of having a technical assistance plan, that is, with the mental health authority (mha) current and retired point persons. however, as we had also worked closely with ghana health service (ghs) mental health unit, they were also identified for interview to ensure a good balance between the disability and mental health sides of the programme. before each interview, lyla adwan-kamara (l.a.-k.) made contact with participants and shared the information sheet. dates and times were then arranged with individual stakeholders. all study participants provided voluntary informed consent to participate. in total, 32 interviews were conducted with 14 stakeholder organisations (see table 1). table 1: an outline of participating stakeholder organisations (n = 14) and interviewees (n = 32). data collection two main methods were used to collect the data, namely in-depth interviews and a document review of the programme. documents included narrative reports from consortium partners, milestone reports and monitoring, evaluation and learning reports. l.a.-k. and l.s. conducted all the interviews in english. interviews were conducted either in person or virtually, depending on the interviewee preference and location. the research team designed the interview guide based on the research questions and informed by the programme’s toc, exploring perceptions of the effects of key inputs and the main strategies. the interviews then explored the validity of the key assumptions underpinning the toc and finally explored the extent to which the interviewees felt the intermediate outcomes had been achieved. interviews were recorded and lasted between 45 min and 1 h and 15 min. data analysis audio files from the in-depth interviews were retrieved from the recorder, categorised into separate folders representing each stakeholder and securely stored on sharepoint with restricted access. all the interviews were transcribed by a transcription application. to protect participants’ anonymity, unique identifiers were assigned to the final transcripts for all stakeholders (sakyi et al. 2024). thematic analysis was then conducted using both inductive and deductive approaches (azungah 2018) to understand stakeholders’ perspectives on acceptability and perceived effects of key strategies and inputs, challenges as well as key achievements of ghana somubi dwumadie. themes and sub-themes were developed using a two-staged approach. the deductive approach established initial categories based on the research questions outlined in the semi-structured interview guide (sakyi et al. 2024). subsequently, an inductive approach was employed to identify and incorporate any additional themes that emerged from the interview transcripts, ensuring a comprehensive analysis that captured all relevant insights. analysis was done by l.s. and l.a.-k. using using nvivo (a qualitative data analysis software). reflexivity statement as researchers involved in this qualitative research, we recognise the importance of acknowledging our positionality and its potential influence on the research process. our diverse backgrounds in public health, disability advocacy and mental health services informed our approach to exploring the acceptability and perceived impact of the programme. while this diversity enriched our perspectives, it also necessitated ongoing reflexivity to ensure that our interpretations were not unduly influenced by our professional or personal experiences. we took conscious steps to mitigate biases, such as engaging in peer debriefing and triangulating findings across multiple data sources to preserve the authenticity of participants’ voices. this reflexive process strengthened our commitment to presenting a balanced and credible account of the programme’s impact. we also acknowledge the potential power dynamics at play in our interactions with study participants. we approached the data collection process with cultural sensitivity, ensuring participants felt respected and valued for their insights. through open-ended interviews and participatory methods, we aimed to foster an environment where they could freely express their views on the programme’s acceptability and impact. this reflective stance guided our analysis, enabling us to remain empathetic while critically examining the findings to draw meaningful conclusions. ethical considerations ethical approval to conduct the study was obtained from the kwame nkrumah university of science and technology (knust) humanities and social sciences research ethics committee on 07 september 2023 (ref: hussrec/ap/159/vol. 2). results implementation of programme’s theory of change the programme sought to: [c]ontribute to two long-term expected outcomes: (1) quality disability inclusive, mental health treatment and rehabilitation services are sustained; (2) people with disabilities, including mental health conditions, are empowered and their rights promoted, protected, respected and realised. (ghana somubi dwumadie 2024; options.co.uk 2020) four intermediate outcomes were outlined in the toc (figure 1) and sought to achieve: figure 1: ghana somubi dwumadie theory of change. ‘stronger policy, leadership, resources and governance systems that respect the rights of people with disabilities, including people with mental health disabilities. scaled-up quality, integrated, disability inclusive community-based and recovery oriented mental health and social services. reduction in negative and discriminatory attitudes, behaviours and norms against people with disabilities, including mental health disabilities. evidence generated to inform policy, practice and enabling environments’. the programme sought to achieve this by providing targeted technical support to the government of ghana – working through key ministries, departments and agencies – as well as offering direct assistance to organisations of persons with disabilities (opds); the development of primary healthcare demonstration sites for increased detection and treatment of mental health and improved accessibility of health facilities; a grant scheme to assist csos in addressing stigma and discrimination, while also empowering persons with disabilities, including those with mental health conditions, to advocate for their rights. additionally, operational research was carried out to guide policy development and practical interventions in mental health and disability (ghana somubi dwumadie 2024; options.co.uk 2020). four key strategies were used by the programme that fed into the overall implementation: (1) ‘cross-sectoral collaboration between different government ministries and departments, csos, traditional and religious leaders and the private sector working in the mental health and disability space’; (2) ‘user-led design and accountability, which sought to increase participation of people with disabilities, including mental health conditions, to ensure that services are designed and implemented in a relevant and appropriate manner, meeting the needs of service users and challenging negative attitudes’; (3) ‘generation of context-specific evidence, learning and adaption, to support advocacy and effective service design and delivery was another strategy the programme used’; and (4) ‘using an inclusive approach with a focus on gender, exploring a range of opportunities to elevate and enable the agency and voice of women with disabilities’ (options.co.uk 2020). acceptability of programme’s key inputs technical assistance to government of ghana the programme’s toc hypothesised that strengthening leadership and governance systems would result in more informed resource allocation, increased inclusivity in processes and mechanisms and, ultimately, the delivery of higher-quality services that cater to a broader range of needs. one of the workstreams was the assistance provided by the programme to the mha to the establishment and operationalisation of a mental health review tribunal and mental health regional visiting committees. assistance provided by the programme facilitated a review of the legal framework for establishing both bodies and the agreement of the process for the nomination, vetting and appointment, inauguration, induction, orientation and training of their members. stakeholders indicated that the provision of technical assistance to the government by the programme was successful. one government stakeholder appreciated the added efficiency, the ability to manage time and resources better and the support in producing a significant volume of quality outputs. stakeholders during interviews mentioned various forms of assistance, such as providing support for the implementation of the global disability summit commitments. they further added that the programme has become a ‘household name’, making it easier to discuss and implement it at the community and district levels. the positive acknowledgement from various ministries and the communities’ familiarity with the programme show its broad acceptance and integration: ‘in terms of the specific support, yes, the project was able to bring on board something like a drafting of policy briefs and that was great. not that [our institution] did not have the skill, but at least putting all together the ambience, the time, everything together to be able to bring out the briefs in the time that these numerous briefs were brought. i think it was something that we would consider a technical support. we would consider that probably would have taken much longer to have been able to do that on our own. but the totality of bringing the policy briefs, the numbers that we had, for instance, briefs on traditional and faith-based healers, briefs on psychotropic medications, various briefs, i’m not sure we’d have been able to bring them all within that space of time. so, yes, there was support along that line.’ (government of ghana stakeholder 3) ‘i am aware of some of these technical assistance or support to government, those that i mentioned about putting the global disability summit commitment into perspective, and then informing government as to what to do, the 3% common fund and many other things that at that level, the engagement that was made at that level. and it’s also, and then quite a lot with the mental health authority and all that, the tribunal that was set up. these are all the technical assistance to government, which works so well and complements the efforts of grantees at the grassroots. and it got to a point, you can see that ghana somubi becomes a household name.’ (grantee 1) technical assistance to civil society organisations the programme provided technical assistance to gfd and mehsog. the technical assistance included leadership training for gfd regional leaders and training of trainers on rights-based advocacy for mehsog. the technical assistance work with gfd led to increased ownership of advocacy and stronger leadership skills in policy-level engagements, media engagements and self-advocacy for quality services by people with disabilities. the capacity needs assessment played a key role in enhancing gfd’s organisational abilities, helping them understand their strengths and areas for improvement: ‘[t]here was also the technical assistance to civil society organisations, that was really helpful…considering the number of csos and national level ngos that were supported even to understand basic financial policies and guidelines, issues of reporting and developing funding proposals were of help to them. there has been a huge amount of strengthening of civil society sector in ghana for advocacy, especially within the disability and mental health sectors.’ (consortium partner 2) ‘the capacity needs assessment was very useful because it gave us a better picture of our capacities and the gaps that needs to be addressed and following the assessment we took some actions to address some of the gaps that were identified so yes we will say it was good.’ (civil society organisation 1) development of primary healthcare demonstration sites the programme’s toc outlined that people with disabilities, including mental health conditions, should have access to health and social services. the programme therefore sought to design a range of workstreams to demonstrate how health services can be planned and implemented with better integration of mental health diagnosis and treatment and to show how health services can be more accessible for all. a key example was the development and implementation of integrated district mental healthcare plans. to gain a deeper understanding of the primary healthcare system and opportunities for integrating mental health services, the programme supported a situation analysis of mental health services in five demonstration districts (weobong et al. 2023). ghana somubi dwumadie subsequently worked in partnership with the ghs and the mha to develop and implement the district mental healthcare plans in three pilot districts: anloga in the volta region, asunafo north in the ahafo region and bongo in the upper east region (weobong et al. 2023). as part of the implementation, the programme supported the capacity building of 84 primary healthcare providers from 15 health facilities in mental health gap action programme (mhgap) training. the programme also trained 17 healthcare workers from the three districts to equip them with the skills needed to train others, and they in turn trained 87 community health volunteers under the supervision of programme staff. the training equipped community health volunteers to be able to identify and refer people with mental health conditions to health centres, and general health workers were equipped to provide mental health services appropriately, including identification and referral of cases, using the who mental health gap action programme (mhgap) intervention guide (keynejad, spagnolo & thornicroft 2021). with the support of ghs and mha, the programme conducted supervision of the implementation of the district mental healthcare plans using the standard-operating procedures designed by the programme. a mixed-methods process evaluation on the development and implementation of district mental healthcare plans has been undertaken and reported in another study (ae-ngibise et al. 2024). effective participatory approach the programme’s strategy of involving multiple stakeholders was well received and viewed as effective according to interviews conducted with partners. local stakeholders were actively engaged in crucial processes such as district selection, toc development and the design of mental health care plans. the participatory nature contributed to a sense of ownership and buy-in from local actors and ensured that the resulting plans were well adapted to the local context, both of which were perceived as crucial for the success of the programme: ‘and i think what worked well from my perspective is having a very participatory approach from the outset, you know, involving all the stakeholders and first of all selecting the districts. and then once the districts were selected, getting the local stakeholders involved in the toc process and designing the mental health care plans. i think that worked quite well.’ (consortium partner 4) grants and capacity building to civil society organisations the programme adopted collaborative, co-creation and user-led approaches to designing and deploying a targeted and culturally sensitive social and behaviour change (sbc) strategy, which aimed to reduce stigma and discrimination. since 2020, the programme has carried out three thematic grant rounds. in 2020, it introduced the covid-19 psychosocial resilience support grants. the following year, the 2021 evidence and effectiveness grants round supported a variety of advocacy and sbc initiatives, funding nine advocacy and sbc projects as both small and large grants, which ended in 2022 and 2023, respectively. finally, in 2022, the programme launched the legacy and sustainability grants round. the evidence and effectiveness grants aimed to empower people with disabilities through evidence-based approaches, training disability inclusion champions and improving support from duty bearers. grantees employed various advocacy strategies, including interface meetings between disability groups and duty bearers, capacity building for effective advocacy and participatory user-led activities (zuurmond et al. 2025). they also conducted research studies, disseminated findings and engaged stakeholders. self-help groups were mobilised into advocacy networks. grantees also trained health personnel and organised policy dialogues and awareness campaigns on mental health, emphasising engagement with government, traditional and religious institutions. the legacy and sustainability grants by ghana somubi dwumadie focused on strengthening small grassroots organisations to sustainably improve lives of people with disabilities, especially women. building on previous grant experiences, four local disability and women’s rights organisations received grants from november 2022 to october 2023. grantees were supported in developing frameworks, work plans and reports to guide and document their progress and achievements. interviews with stakeholders about the perceived effects of the programme’s key inputs generated themes such as capacity building and co-creation process, engagement and technical support, as well as empowerment and skill building. capacity building and co-creation process this was a two-way learning process that improved the capabilities of both the grantees and the programme implementers. they emphasised the co-creation process, as well as the collaborative and participatory nature of this approach. the local partners’ contributions to the design of the grants, materials and implementation of the work showed their integral role in the process. stakeholders valued the input and expertise of local partners. the involvement of local partners in designing and delivering the grants demonstrated their active engagement and ownership, further supporting the acceptability of this approach: ‘i think delivering through local partners should be how we operate, though. i think that in itself as a mechanism was the right way to go about it because i think that built capacity as well as we learned from them. it was kind of that co-creation process was really, really positive and they contributed a huge amount to the design of the grants themselves, the materials, the work we delivered. so i think that was really positive. and they know their communities, so they know what can work and what can’t work. so i think that was the right mechanism.’ (consortium partner 1) engagement and technical support stakeholders highlighted how the programme engaged with them as grantees and provided technical support. the programme provided support in identifying and addressing grant design areas that needed work and stakeholders valued this hands-on method, which contributed to more successful outcomes. the stakeholders appreciated that the programme did not abandon grantees after providing the grants. instead, it offered ongoing support, including periodic trainings and technical assistance. this approach contrasts with other grant experiences where support was limited or non-existent after the grant was awarded: ‘and after we got the grants too, they didn’t just leave us like that for us to implement, but we were also given periodic trainings. they were very engaging with us, providing us with support, technical support. as to where we needed to work to make sure that. so i think the whole process and the way, the method that was used as grants, i think, is the best. and also, i think we got one grant from another country and we never knew them. we never met them until everything was done.’ (grantee 4) empowerment and skill building the stakeholders believed that the strategy of working with local organisations on the ground was the most appropriate approach. by outsourcing implementation to local organisations, the programme facilitated skill building and empowerment among regional leaders and associations. the stakeholders noted that if ghana somubi dwumadie had directly implemented the projects, there would have been no skill development or empowerment, and they would have remained mere observers. this highlights the perceived effects of the strategy in fostering local capacity and leadership. the strategy not only empowered individuals but also strengthened the organisational presence and influence of regional disability associations: ‘i think that is the most appropriate way we should have done it. because in the disability space, the skill to do some of this work does not lie in one person. so it’s very good that you work with the people who are actually on the ground … you can’t implement something for a person with disability without involving them. because they have been there for a very long time. that is their space. they know how to work. but because you outsource it to some of these organisations themselves, for them to implement it themselves, that was the best thing.’ (civil society organisations stakeholder 2) operations research and studies conducted ghana somubi dwumadie’s toc hypothesised that generating and disseminating relevant evidence leads to increasing evidence-based policy and practice. the programme published 11 studies in peer-reviewed journals to build an essential evidence base for addressing healthcare disparities and influencing behavioural change. importantly, it prioritised involving people with disabilities and mental health conditions in evidence generation, aiming to empower these groups and make the evidence more relevant and urgent. the programme implemented a focused approach to research and studies, concentrating on five key themes: mental health and disability research agenda, grantee-led research, district mental healthcare plans, social behaviour change and self-help groups. these areas guided the programme’s comprehensive efforts in addressing mental health and disability issues through targeted research initiatives. perceived effects of programme’s key strategies the study sought to assess the perceived effects of the key strategies the programme employed to effect change. this section explores the ways in which the programme implemented the various outcomes outlined in the toc. cross-sectoral collaboration the programme adopted a collaborative approach to working with institutions and stakeholders who have responsibilities for upholding the rights of people with disabilities. the programme collaborated with mogcsp, ncpd and the disability unit of the sdg secretariat under the office of the president to bring together key stakeholders, including people with disabilities and mental health conditions, to develop a roadmap for the implementation of the 2022 global disability summit disability commitments made by ghana. the programme made deliberate efforts to engage with traditional leaders and faith-based healers, to develop a culturally appropriate approach to engagement and influencing attitudes and practices. the programme offered various mechanisms by which grantees could engage with traditional and religious leaders, including through frequent direct consultations and interface meetings, and by involving them in the design and delivery of stigma-reduction activities, such as selecting inclusion ambassadors (zuurmond et al. 2025). perceived effects of engaging traditional leaders according to interviewed stakeholders, ghana somubi dwumadie’s strategy of engaging traditional leaders was highly effective. one of the programme’s objectives was to reduce stigma within communities, and this was reported to be effectively communicated through the traditional leaders. the programme’s efforts resulted in concrete, measurable changes at the community level, demonstrating effective policy influence: ‘and reading just, you know, i wouldn’t say i have some knowledge across the board of the grants, but little bits and pieces that i’ve read have certainly shown that when that approach has been taken, that’s been very effective in getting those traditional leaders on board with messages around reducing stigma, with various, i don’t know, bylaws and so on. about language used and so on, all that work. i think it’s been effective and it’s, it seemed like extremely good strategy for going right to the key influences within community.’ (government of ghana stakeholder 2) user-led approaches ensuring that people with disabilities and their organisations were not just beneficiaries but active implementers and leaders was a key programme strategy. the user-led approach empowered and engaged people with disabilities and their representative organisations to participate in the design and implementation of key programme activities and decision-making processes that affected them. the programme instituted a programme advisory group consisting predominantly of people with disabilities, including mental health conditions, to help guide programme activities and ensure that the voices of people with disabilities were heard and considered in programme design and implementation. this study sought to assess the perception of stakeholders on the perceived effects of the user-led strategy in the implementation of the programme. the following themes emerged from the interviews: effective disability-led implementation stakeholders contrasted ghana somubi dwumadie with other projects that mention disability but fail to meaningfully involve disabled people’s organisations (dpos). this comparison underscores the programme’s perceived effects in genuine inclusion. some stakeholders also cited that a high percentage of advisory group members being people with disabilities demonstrated the programme’s perceived effects in ensuring representation: ‘as i explained earlier on, nothing about us without us. that’s very important. and persons with disability are the best people to lead issues about themselves. because they live their disability, and they know … they have the experience. they know how to work around it. so, with a user-led approach … … where we have persons who are persons with disabilities themselves leading the project themselves…’ (cso stakeholder 3) empowerment of user groups stakeholders underscored the perceived effects of the programme’s strategy of working with user groups and involving community members and traditional leaders from the outset. empowering user groups to advocate for quality mental health services and including influential community members in the design and implementation phases lead to greater ownership, easier implementation and sustainability of the project. the stakeholders highlighted these practices as important and advocated for their continuation in future initiatives. this approach not only ensured the project’s relevance and acceptance but also built local capacity and leadership: ‘where they work with user groups and try to empower them to advocate more for quality mental health services. and especially for our respective association sites to where we now design, where we deliberately included people from the communities, traditional community leaders, where we try to get them onto the operations team. so i think these were all things that we can advocate to be taken forward. when you involve the people at the beginning and make sure that they own it, then it’s easier to implement it than if you had designed it without them.’ (consortium partner 1) ‘well in terms of the user-led approach we saw that working very well so through our project we designed we had what we call the self-help groups who were the users themselves, the service users were strengthened into groups so that in terms of sustainability after the project end those associations will still be there. it forms some kind of social support for each other and that also worked well; it has been very effective the first one also because it was not as frequent as the rest of the three you see that the user led were involved throughout the project from the design throughout to the project.’ (grantee 3) limitations and barriers to programme implementation funding instability and unpredictability one of the dominant themes regarding limitations of the programme was funding instability from the donor. this was a major challenge that affected the programme’s ability to plan and execute activities consistently. interviews with stakeholders showed that the unpredictable and unstable funding environment had wide-ranging negative impacts, from issues like reduced scope and lost opportunities for dissemination to more intangible but equally important factors like eroded confidence, damaged relationships with partners and decreased team morale: ‘the negative bit is the unstable funding for the programme. when a lot of the times you are not certain whether what you are actually certain to do, you will actually do it, or not, because here and now you will hear budget cuts reduce work scope…’ (consortium partner 2) ‘when we took off in march 2020, with all the availability of funding, there was a lot that the programme thought it could … implement in order to bring about some of these changes. but we couldn’t control the funding from the donors. they decided, year on year on, leading to the end of the programme, budget cuts here and there. some of the activities, for instance, had to be taken off. because of budget cuts. and there’s nothing we can do about it.’ (consortium partner 3) gap between advocacy and implementation one of the challenges stakeholders identified was the gap between advocacy and implementation. according to one stakeholder, there was a disconnect between the programme’s focus on advocacy and capacity building and the practical needs for service delivery on the ground. the programme not making provision for service delivery showed a significant limitation in its scope. according to stakeholders, the programme’s perceived effects were hampered by not being able to provide essential resources for mental health care: ‘the project did not make provision for service delivery. and so along the line, the challenges we came across in terms of direct service delivery that could enhance the quality of inclusive mental health care was missing because the programme could not provide those services directly in terms of medications, maybe equipment that they will need to do their work.’ (grantee 3) lack of control over policy implementation another significant barrier to the programme’s perceived effects was the limited control over critical political processes. while the programme has achieved success in advocacy, the programme’s lack of direct influence over certain critical outcomes, particularly those dependent on high-level political decisions, has hindered the full realisation of the programme’s advocacy efforts: ‘even right now, as we speak, as we have advocated and parliament has passed the law, the president is yet to sign the bill. and this is something squarely that is not under our control as a programme to be able to do, but we can find a way to push through our advocacy to get that done. but it’s something squarely that is outside our control.’ (grantee 2) discussion the study explored the acceptability and perceived impact of the programme through a process evaluation using the programme’s toc. the findings show that the programme’s inputs and strategies, particularly technical assistance, user-led approaches and cross-sectoral collaborations, were generally well received and contributed to disability inclusion. the programme successfully integrated mental health services into primary healthcare systems across three district demonstration sites, addressing service gaps. furthermore, the use of grants and capacity-building initiatives empowered local civil society and disability organisations and facilitated stronger advocacy efforts. however, the programme faced challenges related to budget changes, inability to implement advocacy goals and limitations in policy implementation because of external political factors. key strategies and perceived impact the programme’s technical assistance to both government agencies and csos was perceived as crucial to strengthen leadership, governance and advocacy in the disability and mental health sector. stakeholders highlighted how this support enabled the development of policy briefs, strengthened advocacy on issues like the global disability summit commitments and improved organisational capacity. these findings are consistent with literature on capacity development in lmics, which has shown that strategic technical assistance can fill institutional gaps and could accelerate systems change (bates et al. 2014; engelgau et al. 2018; hansoti et al. 2019). in the disability sector, studies have highlighted the importance of building both individual and organisational capacities to ensure effective implementation of disability rights. empowering persons with disabilities with advocacy skills, leadership training and awareness of their rights can strengthen their ability to participate meaningfully in decision-making processes and hold duty bearers accountable (graybill et al. 2022; kim, hall & jung 2021; matsana et al. 2021). at the organisational level, strengthening the technical, managerial and advocacy capabilities of dpos and other civil society actors is critical for sustained engagement in policy dialogues, effective programme implementation and resource mobilisation (elbers & kamstra 2020; grills et al. 2020). the programme’s implementation of district mental healthcare plans and the training of primary healthcare workers were notable attempts to integrate mental health services into ghana’s existing primary healthcare and to narrow the treatment gap. stakeholders viewed these efforts positively, especially in terms of increasing accessibility and strengthening early detection and referral systems through the who’s mental health gap action programme (mhgap). this aligns with global calls for integrated, community-based mental health services, particularly in lmics where mental health systems are under-resourced (lund, tomlinson & patel 2016; ward et al. 2024). studies have shown that integrating mental health into primary care improves service utilisation, reduces stigma and promotes continuity of care (javed et al. 2021; sakyi et al. 2024). ghana somubi dwumadie’s demonstration sites represent an effective model for other districts to replicate in ghana. the grants mechanism was another effective input that empowered organisations, particularly in advocacy and social behaviour change programmes. stakeholders appreciated the co-creation process, technical support provided after the award of grants and opportunities for skill-building. the multi-round grant structure also allowed for targeted responses to emerging issues such as covid-19-related psychosocial needs and sustainability planning. this approach has shown to be among the best practices in participatory development, where funding goes hand in hand with ongoing mentorship and collaboration (cann et al. 2024). the uniqueness of this was that grant-funded organisations were not passive recipients but co-implementers, contributing contextual knowledge and community trust – key elements in achieving local ownership and sustainability. the programme’s emphasis on operational research as an input was critical to generating locally relevant evidence. the peer-reviewed publications and various internal studies addressed knowledge gaps and provided a foundation for advocacy and policy development. a unique and widely accepted aspect of the programme was its user-led approach, which actively involved people with disabilities and mental health conditions in programme design, implementation and oversight. mechanisms such as the programme advisory group and self-help user groups fostered meaningful participation and local ownership. this aligns with the disability rights principle of ‘nothing about us without us’ and reflects best practices in participatory programme design (zuurmond et al. 2025). research indicates that such approaches improve service acceptability, facilitate scale-up and foster trust (turuba et al. 2024; watkinson, dharmayat & mastellos 2021). when people with lived experience are meaningfully engaged in designing, implementing and evaluating programmes, interventions are more likely to align with the actual needs, preferences and cultural contexts of the target population (ng et al. 2024). this leads to higher levels of community trust and increases the acceptability of interventions. another finding was the success of cross-sectoral collaboration, which includes engagement with traditional and religious leaders. this was particularly important in addressing stigma and promoting the programme’s interventions. stakeholders attributed the involvement of traditional leaders with influencing local norms, and even contributing to the development of bylaws related to inclusive language and behaviour. this strategy aligns with literature that highlights the role of traditional leaders in effecting social norm change, especially in areas of mental health and disability where stigma is deeply entrenched (maiden 2021; voors 2019). the involvement of traditional and religious leaders in stigma-reduction activities represented a novel strategy, increasing the programme’s cultural relevance and local acceptance. however, the external funding instability and lack of control over political processes constrained its full potential. the gap between advocacy and direct service delivery highlights a significant limitation, indicating that future interventions might need to balance advocacy with tangible service provision to have a more immediate impact. strengths and limitations this study included a number of strengths. firstly, the use of a process evaluation design rooted in the toc allowed for a detailed assessment of the programme’s implementation and delivery. this approach provided insights into how specific strategies contributed to the programme’s outcomes, giving a clearer understanding of what worked and what did not. secondly, the combination of in-depth interviews and document reviews ensured comprehensive data collection from a diverse range of stakeholders, including government officials, csos and grantees. this diversity of perspectives enriched the analysis, making the findings more robust and representative of the programme’s impact. thirdly, the use of both inductive and deductive thematic analysis helped capture a wide range of emerging themes, allowing for a more nuanced understanding of the stakeholders’ experiences. however, the study also has limitations; one key limitation is the potential for selection bias, as the participants were purposively sampled. while this purposive sampling ensures that key stakeholders are included, it might exclude other relevant voices that could have offered different perspectives on the programme’s acceptability and perceived effects. implications and recommendations by strengthening technical assistance, user-led governance and cross-sectoral collaboration, the ghana somubi dwumadie programme directly contributes to key sdg. while advocacy efforts were effective, stakeholders highlighted gaps in direct service delivery. future programmes should balance advocacy with tangible support, such as the provision of essential mental health medications and equipment, to enhance the practical impact on communities. the effectiveness of user-led strategies in promoting inclusion and empowerment suggests the need for broader adoption of these methods in similar programmes. ensuring the active participation of people with disabilities in programme design and implementation fosters ownership and sustainability. additionally, the study was conducted during the programme’s implementation phase, meaning long-term impacts could not be fully assessed. future research should assess the long-term outcomes and sustainability of the programme’s strategies and their impact on disability inclusion and mental health services. conclusion ghana somubi dwumadie has made significant contributions to disability inclusion and mental health services in ghana, particularly through its multi-faceted approach that combined technical assistance, cross-sectoral collaboration and user-led design. this process evaluation has demonstrated that key strategies – such as providing technical assistance to government and civil society, promoting participatory governance through user-led mechanisms and fostering cross-sectoral collaboration – were perceived by stakeholders as highly effective in strengthening systems, building capacity and empowering people with disabilities. the programme succeeded in building the capacity of both government and civil society, empowering stakeholders to advocate for disability rights and integrate mental health services into primary healthcare. its strategies, such as engaging traditional and religious leaders in stigma-reduction efforts, set it apart as a pioneering initiative in the field. however, the programme also faced notable challenges, including funding instability, the gap between advocacy and service delivery and limited control over key political processes. these challenges highlight the need for future programmes to ensure sustainable and predictable funding mechanisms and a balance between advocacy and direct service provision. despite these hurdles, the study demonstrates that the programme made substantial strides in creating an enabling environment for disability and mental health advocacy in ghana. future initiatives can build on the programme’s successes while addressing its limitations to ensure deeper and more sustainable impact. acknowledgements this study is a product of the ghana somubi dwumadie (ghana participation programme). the authors would like to acknowledge mr osman mensah for his contribution in acquiring ethical clearance for the study. the authors express their heartfelt gratitude to all the participants whose contributions were essential in providing data for this research. competing interests the authors reported that they received funding from the united kingdom foreign commonwealth and development office. the authors declare that the funders did not play any role in the study design, data acquisition and analysis, decision to publish or preparation of the manuscript. authors’ contributions l.s., l.a.-k., k.a.a.-n. and c.l were responsible for the conceptualisation of study, critical revisions and thoroughly reviewed and approved the final manuscript. participant recruitment and interviews were facilitated by l.a.-k. and l.s. l.s. and l.a.-k. carried out data acquisition, data analysis, data interpretation and drafting. l.s. was the guarantor. funding information the authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article. this work was supported by the united kingdom foreign commonwealth and development office (award number: po5604). data availability data supporting the findings of this study are available from the corresponding author, l.s., on reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references ae-ngibise, k.a., sakyi, l., adwan-kamara, l., weobong, b. & lund, c., 2024, 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organization, geneva. zuurmond, m., naami, a., adwan-kamara, l., stephen, c., basnet, s., vanderick, c. et al., 2025, ‘stigma reduction in a disability and mental health programme in ghana: lessons in participation’, african journal of disability 14, 1508. https://doi.org/10.4102/ajod.v14i0.1508 abstract introduction theoretical perspective methods results empirical description: josephine ethical considerations discussion conclusion acknowledgements references about the author(s) grete barlindhaug department of health and care sciences, faculty of health sciences, uit the arctic university of norway, norway eric umar department of community health, university of malawi, blantyre, malawi margaret wazakili department of community health, university of malawi, blantyre, malawi nina emaus department of health and care sciences, faculty of health sciences, uit the arctic university of norway, norway citation barlindhaug, g., umar, e., wazakili, m. & emaus, n., 2016, ‘living with disabled children in malawi: challenges and rewards’, african journal of disability 5(1), a254. http://dx.doi.org/10.4102/ajod.v5i1.254 original research living with disabled children in malawi: challenges and rewards grete barlindhaug, eric umar, margaret wazakili, nina emaus received: 14 jan. 2016; accepted: 14 june 2016; published: 24 aug. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: rehabilitation personnel need to be sensitive to the cultural aspects that constitute the environment of a disabled child’s family life. objectives: the aim of this study was to gain insight on how families experience parenting of disabled children and how the families experience the support provided by the rehabilitation system in malawi. method: an anthropological field study combining interviews and observations was conducted in a rural district of malawi in 2011. permission was granted to follow four families, and this study presents the stories of two families, whose children have severe disabilities. we used phenomenological and narrative analyses to make sense of the stories. results: the findings indicate that families with disabled children invest time and emphasise care for their disabled children. they feel enriched by their experience despite challenging situations with little support from the rehabilitation services. high standards of care demonstrating positive and moral attitudes have earned these families respect in their communities. storytelling has created an opportunity for the families to understand and interpret their challenging situation with inherent contextual meaning. conclusion: this study shows that families with disabled children draw on cultural and structural strengths that rehabilitation professionals should be aware of in their support to mothers and other caregivers of children with disabilities. introduction the world health organization (who) report on disability underlines how the person’s environment influences the experience and extent of disability (who 2011). the cultural aspect constitutes part of the environment of the family life with a disabled child. within medical anthropology and social and health sciences, this aspect is described from different perspectives. over the years, research has emphasised the burden and the emotional distress associated with parenting of children with disabilities (dambi, jelsma & mlambo 2015). parents experience the negative consequences of stigma and socio-structural constraints (green 2003, 2007; mckeever & miller 2004; ryan & runswick-cole 2008). however, recent research also indicates that a narrow focus on emotional anguish is far too simplistic. such research has shown that many parents of children with disabilities identify several positive aspects of their experience (green 2002, 2003, 2007; heiman 2002; mckeever & miller 2004; milo 1997; ryan & runswick-cole 2008; traustadottir 1991). these studies suggest that caring for a disabled child reinforces strong feelings of love (traustadottir 1991), pride, respect and value, growing courage and emotional strength (green 2002, 2003), personal growth (milo 1997), strong social and family bond and deeper relationships with friends and family (ryan & runswick-cole 2008). parents feel acknowledged as competent people with lives enriched by their children (green 2007; heiman 2002). therefore, the existing literature concerning parenting of disabled children shows conflicting results. to create a positive, good and meaningful (re)habilitation process, it is important that rehabilitation personnel and social workers appreciate and acknowledge the efforts of the families that strive to create a functional daily living environment for their disabled children. encouragement and support to the family that promotes existential hope in the present situation and for the future is of immense importance (heiman 2002; mattingly 2010; mckeever & miller 2004; milo 1997; o’toole & maison-halls 1994), especially where resources are limited. malawi is a country of 15 million inhabitants and one of the poorest countries in the world. health resources are scarce, and there is an acute shortage of rehabilitation personnel. families with disabled children cope with life without the network and support that is usually provided by the state in many western countries. this study illuminates multiple aspects, including the physical and emotional wellbeing of two families with their severely disabled children in malawi. thus, the aim of this study was to gain insight on how families experience parenting of disabled children and to gain insight into how the families experience the support provided by the rehabilitation system in malawi. theoretical perspective in the present study, we have used an analysis based on a narrative phenomenology of practice inspired by cheryl mattingly (2010), to understand how families with disabled children manage their lives and overcome daily challenges in meaningful ways despite their experience of despair. in the analysis of practice and reality, mattingly (2010) brings together multiple perspectives including a phenomenological approach as well as an analysis of how the social structures influence our lives. she explores the relationships between subjectivity and the social and political orders and describes how this relationship is influencing and shaping our practice. mattingly (2010) offers a theory of practice that illuminates life at multiple levels, seeing it through the prisms of the personal as well as the structural forms. in her analysis, she highlights the small dramas of ordinary life, the particularity of events and personal agency. with a focus on the agents themselves, she examines their efforts in situational settings, treating the larger macrostructures as powerful cultural resources that influence persons and situations without determining their actions, experience and deliberations. the narrative phenomenology described by mattingly (2010) uses concepts such as motive, character, plot and scene to analyse person-centred practice. these ways of analysing agency and intention in practical life were initially offered by kenneth burke as far back as 1964 (mattingly 2010). into this, victor turner (1974, 1987) included the notion of social drama. in the latest decades, narrative has emerged as a key term in the analyses of the temporality of lived experience, of actions, suffering and thoughts. narratives contribute to an understanding of social life and experience of time as the unfolding of events. mattingly uses the terms drama and narrative almost interchangeably; drama is used to underscore the eventfulness of social action and narrative to describe the temporal complexity of situations and practice. michael jackson is another anthropologist who emphasises the inter-subjectivity of dramas in the relationships between the one and the many, the particular and the universal (jackson 1998). he describes inter-subjectivity as a forceful field charged with energy and driven by need. people need to belong to and engage effectively in a world of others with a need to have some saying and a sense of making a difference. all the time, individuals have to struggle for a balance between one’s own needs and needs of others, between the world one calls one’s own and a world of not self or other. the relationships between persons are of utmost importance (jackson 1998, 2002). jackson underscores the importance of seeing life dramas through the relationship between microcosm and macrocosm, between the visible and invisible, the familiar and the foreign, and the living and the dead (jackson 2002). jackson also describes the inter-subjective life dramas as a sense of agency, where the most compelling is the human need to imagine that one’s life belongs to a matrix greater than oneself, and in this sphere of greater being one’s own actions and words matter and make a difference (jackson 1998). what matters in life events is how the inter-subjective dramas, the stories enable us to regain some purpose and control over the events that confound us, over disempowering circumstances, giving us the faith that the world is within our grasp (jackson 1998). the present study takes a person-centred approach with an interest in the aspects of hope in people’s life struggles. inspired by mattingly, we want to examine hope in a practice that is contested, dynamic and hybrid (mattingly 2010). based on jackson’s theory, we want to examine the life on the ground in all its local and personal immediacy and drama (jackson 1998). for the analyses of how the social structure informs people’s actions, we also lean on pierre bourdieu’s theory of practice, which helps to understand the dialectic between objective structures and concrete action and interaction. his analytical concept of habitus focuses on the dynamic relations between the social and the individual. habitus encompasses the incorporation of social structures in individuals and groups as dispositions and tendencies to perceive, move and act in socially acceptable and adjusted ways. habitus is acquired through participation in everyday activities and relations and is influenced by the cultural aspects surrounding our lives (bourdieu 1990; bourdieu & wacquant 1995). methods research setting and study design the material developed during a 4.5-month-long anthropological field study conducted by the first author (g.b.) in a rural district in malawi. the university of malawi, college of medicine research ethics committee in blantyre granted ethical approval for the study. families with disabled children were contacted through the outreach rehabilitation programme in blantyre where they were registered. oral and written information about the study was given in chichewa (local language) by the malawian co-researcher (e.u.) to the families that agreed to participate in the study, and they were informed that their participation was voluntary. the families accepted orally, and the researchers were welcomed to follow four families in their daily life. in this study, we present the stories of two of the families, whose children have severe disabilities. the other two families’ children had minor disabilities with less challenging everyday life. each family in this study was followed 5 days a week over a period of 1 month through everyday family life and village activities. this allowed a direct access to the two families’ practices, interpretations and experiences in their natural setting. wollcott (2008) describes fieldwork as a special way of viewing human social behaviour. he emphasises that being in the field over time gives a researcher the opportunity to become gradually closer to people’s concepts of life and to understand how their worldview influences life’s projects and provides meaning to events and life experiences. because the researcher (g.b.) did not know chichewa, a female local research assistant without any formal qualifications followed the field study and assisted with daily conversations with the families and asked questions about actual life events. at the end of each day, the researcher and the assistant summed up the happenings, wrote down the field notes and prepared for the next day. in addition to this, semi-structured interviews were conducted by the malawian co-researcher (e.u.) to complement the observational data. in this study, we only utilise data from one semi-structured interview in addition to the field notes. study participants the two families with severely disabled children who require a great deal of help and care both live in the same village and depend on small-scale farming. the names of the children and their family are constructed to secure anonymity. ‘anna’ is 11 years old. she lives with her parents, one older sister and brother and three younger siblings. two of her brothers and one sister have moved out. anna contracted malaria when she was 7 months old and suffered brain damage with consequent motor and cognitive delay. she moves around by crawling and can stand for short periods while holding on to objects. she has minimal expressive language but understands what people say to her. an interview was conducted with anna’s mother after the end of the fieldwork, and these data are integrated in the empirical description. josephine is 9 years old and lives with her grandmother, five aunts, two cousins and two other members of the extended family. josephine was born with brain damage, which is classified as cerebral palsy. she is in total need of help for all her daily activities. analyses written notes from the observations and conversations were taken throughout the fieldwork. the formal interview with anna’s mother was transcribed in chichewa and translated to english by the malawian co-researcher (e.u.). inspired by the outlined theoretical perspective, analysis of the observational and transcribed data was based on content analysis (polit & beck 2012) inspired by a narrative approach. the analysis of the text data included coding, categorisation of the coded topics, identification of basic units and main themes and meaning construction in a circular process. through this process and the narrative approach, the results emerged as representative stories for the everyday life of the two families under study. typical everyday activities and social life emerged as central themes in the analyses, so did the story about how the child contracted the disease and the encounter with the healthcare system, and then finally, how the families are coping and their thoughts about life with a disabled child. based on the analyses, the results are presented as stories for each family separately. results empirical description: anna everyday activities when we arrive at the family’s house in the morning, we are greeted by anna’s mother who places a mat under the tree and we sit down. anna comes crawling from behind the house and sits next to us. the oldest sister and her baby also sit down on the mat and greet us. soon there is an eager chat. it does not take long before we are surrounded by other children. the sister leaves the baby with us and goes to do some dish washing. she needs more water, and together with anna, we follow her to the water pump where anna pumps the water because she really loves the activity. the sister carries the water bucket on her head to the house. after some time, anna’s father comes from the mountain bringing firewood on his bike. he sits down beside the house and works on a new mat on which they dry the corn. the sister makes some porridge for the baby and other small children in the household. anna likes porridge as well and is given what is left over by the children. then anna sits naked on a stone in the backyard, while the mother gives her a bath and leaves her to dry in the sun before changing into clean clothes. after that, the mother supports anna under her arms and lets her ‘walk’ a few meters to the wall of the house, and sits her down. we are all served pumpkin. the mother breaks some little branches from a tree in the backyard and sits on the mat while talking to us, and we help her pick small leaves off the branches. she uses these leaves and some tomatoes to make a vegetable dish for lunch. she has also bought some peanuts. we help in shelling before she uses a mortar and pestle to crush them into a powder that she adds to a vegetable dish to improve flavour. anna helps with the crushing of the peanuts. then, it is time to move to the kitchen area in the backyard to make nsima (thick porridge). this is the main meal served with the vegetable dish. before serving the lunch, anna’s mother goes to the mosque for afternoon prayers. sitting on the mat, preparing vegetables, shelling corn from the cob or just talking, lots of people are passing and sitting down for a chat, after a polite and appropriate greeting. anna’s grandmother often drops in on short visits while her aunt makes longer visits, bringing her own vegetables or corn to shell off the cob. some women come to greet us, and they sit down eager to share their stories and hear news from friends. other people also pass a short greeting and sometimes stop to ask questions or take part in the storytelling. women carrying buckets on their heads pass by selling tomatoes, beans, vegetables and small fish. men and young boys come to see the father or the son, and they also greet us, often by hand-shake. the children sit listening to the adults or play with home-made balls, singing, running around or roasting some corn to eat. anna knows some of the songs and tries to sing as well, and when the other children run away, she eagerly follows crawling on all fours. during sowing or harvesting season, anna’s mother works in the field because that is her livelihood. when anna was young, her mother used to carry her on the back, but now she is older and heavier, so she stays at home while everyone goes to school or to the garden. the brother, niece and mother often take turns to look after anna at the house. anna’s mother told us that she is afraid that her daughter might try to follow her to the fields where they cross a dangerous creek, which anna may not manage on her fours. sometimes anna has followed after her mother, and other people have alerted her to bring her daughter back home. the mother is also concerned about what may happen when anna reaches puberty, because she will not be able to clean herself after her menses. in addition, if anna stays alone at home when the other children are at school and the adults in the fields, she may be at great risk of being sexually abused. if that should happen, anna may not be able to tell anybody about the incident or the culprit. such concerns would be averted if anna had a tricycle, as she could then accompany other children to school or the adults to the field. encounter with the healthcare/rehabilitation system anna’s mother tells us her daughter was born healthy and normal. when she was 7 months old, she was sleeping inside the house while the mother did the chores outside. she heard a cry and went in to find the baby unconscious with foam around her mouth. at the time, the family lived in a district away from close family and friends. the mother called her neighbour who suggested that they should go to the hospital. at the hospital, the baby was in coma for 1 week, and she stayed a full month in hospital. the doctor said that anna had cerebral malaria and epilepsy, but comforted the mother that her daughter would be all right and compared her with other children who had died. after several medications, anna recovered, and they went home. as time went on, it became obvious that anna had been severely affected. she could not sit and the condition had affected her speech and ability to eat, she could not see properly and her head was growing bigger. after discharge, the family returned to the home village and visited the local hospital where they met a rehabilitation technician on a regular basis. anna was provided with splints to straighten her legs for standing during the day and to keep the knees straight at night. the mother was encouraged to stand her daughter against the wall. after some time, she did not get any more plasters, and the standing exercise stopped. later, the rehabilitation technician asked the mother to dig a small pit to act as splints, in which anna would stand well supported by the walls of the pit. they did not do any exercises at the hospital. instead, they showed her how to do the exercises and she has done everything as she was told, to the best of her ability, and in a way, therapy has been successful. eventually, anna learnt to sit and crawl on her fours. however, the mother is disappointed that her daughter did not get the tricycle that she was promised: ‘they promised me this bike for the girl, and every time i went to the hospital the bike was not ready’. in due course, the mother received some money from a local member of parliament and went to the tricycle workshop. there were none available for sale and neither were there hand and knee pads to protect her during crawling. anna has continued to have epileptic seizures, for which the mother took her to a traditional healer on several occasions without success. however, hospital medication had reduced the number and intensity of seizures to the extent that these only appeared by each new moon. at the time of this interview, the family had run out of drugs and the number of anna’s seizures had increased again. life with a disabled daughter anna’s mother explains that her life has been greatly affected since her daughter’s illness. she continually wonders about what had happened that could explain this terrible occurrence, especially considering that all her children were born well and healthy. why should this happen to just this child? she has not found any answer, and she has accepted that this must be the will of god. ‘it has been a burden to me and affects me up until today because my child is unable to walk’. although anna’s mother had hopes that her daughter would be able to walk, she nevertheless loves this daughter so much, because god might curse her if she does not. ‘i need to take care of this child and love her as much as i can until i see what god has provided’. the whole family supports anna, and the mother of five has told all her children to love their sister just the way they love themselves, because this is what god has given to them. if they turn their back to their sister, god will not be happy with them. she encourages them not to ignore but to love anna even after she herself is dead. the siblings know how to take care of her, so the mother is convinced that when she dies, anna will still be taken good care of. empirical description: josephine everyday activities when we arrive early in the morning, josephine’s grandmother and her entire household are working in the fields before the sun is too hot, while another guardian stays at home looking after josephine who is still asleep in the yard at the back of the house. the guardian greets us and takes josephine onto her lap. when josephine’s grandma returns, she greets us and starts to make breakfast for her granddaughter and two other grandchildren; tea with sugar and milk powder. the grandmother takes josephine onto her lap and pours some tea into her mouth while in half-lying position. most of it comes out because josephine has problems with swallowing. after breakfast, grandmother helps josephine to brush her teeth and take off the wet clothes. a piece of cloth is wrapped around josephine, and we follow them to the front of the house where we all sit down on a mat under a big tree. in a right-size plastic bath tub, josephine sits with her legs crossed leaning against the tub wall. the grandmother washes her thoroughly, dries her and applies vaseline on her skin lay before changing her into clean, nice clothes. after her bath, josephine is laid on the mat and surrounded by children in the family and neighbourhood who play around her. the grandmother sits with us for a short while and then leaves to do some household chores such as laundry and house cleaning. during this time, we look after josephine and a family member joins us on the mat while preparing vegetables or just talking. in this household, most of the time is spent cooking, doing dishes or looking after small children. when josephine is tired or bored, she makes protesting noises, and her grandmother attends to her immediately. we observe that josephine is throwing up again when she is helped to sit up. the dress gets wet, and her grandmother lays her down on the mat and leaves to find a clean dress to replace the wet one. after a short time, the grandmother continues with her housework while josephine is placed in a wooden chair. she sits in her chair for a short while trying to hold her head up to look at some children playing. it is hard for her; she gets tired and starts whining. then, she is placed on the mat, but josephine is not happy until her grandmother takes her on the back and then she smiles with satisfaction. josephine is 8 years old and it has become increasingly impossible for the grandmother to carry the big girl on her back for a long time. for this reason, josephine is placed on the mat where some children and adults always gather and she accepts to be in the company of the others for a long time. but after some time, she pees and wets her clothes again. the grandmother comes back and changes her into dry, clean clothes. josephine’s grandmother does a lot of laundry on a daily basis and she complains about the quantity and the costs of the soap. while sitting on the mat, we observe that people are passing all the time on their way to the water pump and to visit friends or families. most of them stop and greet us as visitors and the women who are there with us, before they continue on their mission. some women sit down for a short time and some talk about food is exchanged. others only greet and sit down silently. the encounter with the healthcare/rehabilitation system josephine’s mother died in pregnancy at the district hospital just before giving birth. the baby was delivered by a caesarean section, and the grandmother brought the baby back home to the family where she already had five girls and the youngest was 6 months old. it turned out that baby josephine had suffered massive brain damage and developed cerebral palsy. at the hospital, the family was referred to the rehabilitation unit. once a month, they attended treatment and learning sessions about how to handle and exercise the baby. the grandmother also took josephine to the city to a private rehabilitation centre for physiotherapy for 3 months every year over 3 years. a special wooden chair and a standing frame were made at the workshop, and the grandparents paid for it. the private centre closed down, and a monthly visit to the local rehabilitation unit is the only treatment option available to the family. the grandmother also visited a chinese doctor who gave her some vitamins and minerals and said it would give josephine more energy and improve her cognitive skills. she was also taken to the district hospital because of spasms and stomach pain. the doctor showed the grandmother how to gently massage the hard stomach and press the air out. she has done so, and it helps. in addition, she told us that josephine is easier to handle and less stiff than before. on the whole, we were told a lot about the help josephine has received from the healthcare system. this grandmother does not focus on what they have not been provided, but underlines the fact that most activities are done on her own initiative and at a very high financial cost to the family. life with a disabled granddaughter josephine is in need of total help in all daily activities and her grandmother provides such help and care. seldom does the grandmother receive help from her sister or the eldest daughter. in addition to her daily activities, the grandmother also carries out exercises with josephine. the exercises are mostly passive movements of the joints, some active side rolling, active leg movements and head lifting from the mat and short periods of sitting in the chair or standing in the standing frame. when josephine is situated on the mat, in the chair or in the standing frame, with other children around, the grandmother can do some house work. she underlines that a lot of laundry is needed and that she uses a lot of money to buy laundry soap. despite this, the grandmother shows a deep attachment and great affection for josephine. she is aware of the brain damage that occurred at delivery, and she believes that god has given them this child. she is always there for the child when other family members have to leave the house for shopping or other activities. ethical considerations the study was conducted in accordance with relevant national and international guidelines. the university of malawi, college of medicine research ethics committee in blantyre granted ethical approval for the study 19.07.2010 (p.09/08/6/99). families were contacted through the outreach rehabilitation programme where they were registered. oral and written information about the study was given in chichewa (local language) to the families that agreed to participate in the study, and they were informed that their participation was voluntary. discussion the struggle to create a life worth living when a family gets a disabled child, they experience initial shock and despair (green 2007; mattingly 2010). the child is different from what they expected. in a way, they are plunged into a new and unknown situation and have to struggle to navigate through this new life, at a personal, family and community level (green 2002, 2007; read 1991). this experience is described in a similar way, regardless of where in the world the family comes from. the narratives presented here from malawi illustrate how the families after the initial shock cope with challenges, worries as well as love and try their utmost to create meaning and hope under difficult circumstances (ficher & goodley 2007; heiman 2002; landsman 2003; mckeever & miller 2004; mclaughlin 2006). unity and solidarity help anna’s family to navigate through life not only practically but also emotionally, as seen through their smiles and good moods, the smooth division of work and the openness to friends and neighbours. in this poor village community, the family is the organising structure of the society and a valuable resource in managing the new life with a disabled child. the small family is working hard together and they are supported by the larger and extended family and well respected in the community. josephine’s family seems to be in a different situation, where all female members of the family cooperate when it comes to execution of daily tasks, except that the grandmother takes full responsibility for her disabled granddaughter. the grandfather is absent from the family because he lives in south africa, but he has sent money home over several years. their family house is bigger than is usual in the village, it has a sitting room with furniture, tv and radio, none of which we saw in the neighbouring houses. they also have a solar panel that generates electricity to charge mobile phones at a small fee for people in the village. despite these extra resources, the grandmother has obviously an extra burden of caring for josephine. families with a disabled child are often different from other families and as such carry a social stigma that distinguishes them from other members of the society (goffman 1968). for the families we met during this field work, it seems important to be different in a good way. thereby, they gain a positive distinction, both by their participation in society and in the caring of the disabled child. the families want to avoid stigmatisation and to live good, moral lives seems extremely motivating. the stigmatisation seems to be a strain to the mothers and the families, but coping well seems to lessen the stigma (green 2003). the stories of everyday life illustrate what is at stake for people in the village, and the families work hard to live up to what is highly valued: the respect of others. they work hard to care for the family, keep the house and yard nice and clean, prepare enough and tasty food and dress all family members in clean clothes after a daily bath. the mother/grandmother cares particularly about the welfare of the disabled child. this may be interpreted as a personal strategy to be positively regarded in the society and to diminish the stigmatisation. this seems most striking in josephine’s situation. the internalised, cultural knowledge and the habits seem to guide the mother and the whole family in their conduct of everyday life. their own and other’s actions may be understood as meaningful contributions in their inter-subjective drama (jackson 1998). the stories also tell us that in addition to getting most resources out of their own property, someone in the family has to be employed to get money to be able to buy what is needed. the fathers have to find gainful employment outside the village, either in the nearest township or in another country, here exemplified by south africa. the two fathers in the families in question have chosen different strategies. the father in anna’s family stays in the village supporting the family in daily practical and social life, working as a night guard in the township to provide extra money for the family. the father in josephine’s family lives in south africa and supports the family from a long distance. this extra support is vital for people to live culturally and highly valued lives that are important to families of children with disabilities. everyday life stories also tell us that anna’s family gives great priority to fulfil the social expectations of community life. we can see this as a strategic personal agency to act as a normal family. participation in funerals and the celebration 3 days after a funeral is highly appreciated, and anna’s mother and other family members take part in these social occurrences. sharing time with friends, listening to their stories, showing interest, giving personal opinion and sharing knowledge is also valued. in josephine’s family, the grandmother spends less time socialising with other villagers, but gives priority to providing nice clean clothes and good daily care for her disabled granddaughter, all of which are very time consuming. in addition, she values her achievements and material possessions such as a big house, furniture and the solar panel. in this way, the family strives to find a balance in meeting their cultural and personal needs and those of others (jackson 1998).the stories also tell us about the lively social activity outside anna’s family house. the greetings are respectful and anna’s family indicates an inclusiveness more than what is usually observed in thisv illage. this openness and continuous presence can be interpreted as a strategy of personal agency to be an efficient member of society (mattingly 2010). it displays an inter-subjective drama of willingness to engage effectively in a world of others to have something to say and get the sense of making a difference (jackson 1998). hopes and dreams for the future the encounters with the healthcare and rehabilitation system illustrate how little help these families receive from organised services and how they are left alone to cope with their disabled children. anna’s mother explains how her daughter’s illness and the subsequent missing motor and sensory development have been such a constant worry to her all the time. the storytelling about everything that has happened shows how the mother sees life with a disabled daughter as a journey from the past into the future – what happened and what might be. through this process, she creates hope that anna will be healthy and develop in a normal way, learn to walk, and have a tricycle so that she can move around the village. she trusts that the older children will take care of anna when the mother is no longer around. the plot of the story tells how anna’s mother has done everything that was expected of her to the utmost of her ability and that it was fruitful in as far as her daughter reached some functional milestones. the only setback was that the delivery of bandages for applying splints to anna’s weak legs came to an end and that she did not got the tricycle she was promised. this shows how the story can be a tool for making moral judgement through the configuring of the plot (mattingly 2010). the mother underlines all her efforts and achievements in the rehabilitation process. this seems to keep her self-esteem up (ficher & goodley 2007) and the community will judge her efforts as a highly moral part of motherhood (traustadottir 1991). at the same time, she underlines who did not keep their promises and who is to blame for her daughter’s lack of walking function. josephine’s grandmother does not express any complaints about the healthcare and rehabilitation services, but her story reinforces her own initiative and action when it comes to health and rehabilitation and how much money she has spent, which shows the agency of high morality. storytelling may also be interpreted as a process of understanding and coming to terms with what has happened and why. it helps in the creation of meaning and hope in a challenging situation without any inherent meaning. anna’s mother tells about her long time of pondering about the reasons why her daughter fell ill. she could not find any special incident that could explain why this tragedy happened to this special child, but she has accepted it now as the will of god. she tells how she and the family have to care for anna and love her the way god expects and ensure to obtain a reward in turn. josephine’s grandmother has come to the same conclusion that her granddaughter is a gift from god that has to be cared for in the best way possible and she takes this mission seriously. these stories tell us how the mothers let their life dramas exceed the relations between private and public realms. they embrace the relationship between the visible and the invisible, the familiar and the foreign by taking the life dramas to the realms between microcosm and macrocosm (jackson 2002). the existential experiences of their life belonging to a matrix greater than themselves can be seen as a representation of inter-subjective life dramas where the most compelling is that in this sphere of greater being one’s own actions and words matter and make a difference (jackson 2002). the inter-subjective dramas and the plots give the mothers possibilities to regain influence and control of the life situation, providing faith that the world is within their grasp. summary of findings the process of following families with disabled children in malawi underlines how such families gain respect and added value in society despite the challenges associated with everyday life. the mother’s and the grandmother’s daily practices seem strongly motivated by achievement of favourable inter-subjective relations in their particular cultural, social and economic environment. the practical life stories tell how by self-sacrifice they take care of disabled children and gain respect from others as well as create meaning and hope in their own lives. similar findings have also been reported from other studies around the world (case 2000; dambi et al. 2015; ficher & goodley 2007; green 2003; landsman 2003; mattingly 2010; mckeever & miller 2004; mclaughlin 2006; milo 1997; ryan & runswick-cole 2008; traustadottir 1991). in line with our findings, other studies have shown that families highly value rehabilitation personnel who understand their thoughts and meaning-making processes (goodley & tregaskis 2006; heiman 2002; mattingly 2010; mckeever & miller 2004; milo 1997; o’toole & maison-halls 1994). it is our hope that this study will contribute to the understanding of how the personal everyday practices of families and especially mothers of disabled children are informed by cultural and structural forms. the strength of this study lies in its design; an anthropological fieldwork study comprising observations during everyday life activities over several months combined with in-depth interviews. the limitation is the number of families followed as an extended fieldwork could have provided insights into other challenges encountered by other families with disabled children. language was also an obstacle during the fieldwork providing a challenge for conversations except everyday small talk. however, the local research assistant was a great help throughout the fieldwork and we are greatly indebted to her. conclusion despite heavy challenges, families with disabled children draw on cultural and structural strengths to master their everyday activities, maintain hope and construct meaning. rehabilitation professionals and social workers should draw on these insights to enhance the care and support that the mothers and other caregivers provide to children with disabilities. in collaboration with the families, the professionals in question should set realistic and achievable goals. acknowledgements the authors thank the medical research ethics committee and the department of community health at the college of medicine, university of malawi, blantyre, for supporting the study. by allowing one of the staff members to take part in the project as a research assistant, the department of community health offered us a unique opportunity to perform the fieldwork. this study would never have been possible without the cooperation of the families that we followed. we are grateful to them for welcoming us in their homes and sharing their life struggles with us. we also acknowledge the financial support provided by uit the arctic university of norway, which made the field work possible. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions n.e. was the project leader. g.b. and e.u. were responsible for experimental and project design. g.b. performed the fieldwork and data analyses in close collaboration with e.u. m.w. gave conceptual contributions. g.b. and n.e. outlined the manuscript. e.u. and m.w. carefully revised the manuscript. all authors agreed 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‘mothers who care: “gender, disability, and family life”’, journal of family issues 12(2), 211–228. http://dx.doi.org/10.1177/019251391012002005 turner, v., 1974, dramas, fields, and metaphors. symbolic action in human society, cornell university press, ethaca. turner, v., 1987, the anthropology of performance, paj publications, new york. who, 2011, world report on disability. who press, world health organization, geneva, switzerland. wollcott, h.f., 2008, ethnography – a way of seeing, 2nd edn., altamira press, lanham, md. abstract introduction research methods and design results discussion conclusion acknowledgements references appendix 1: interview schedule about the author(s) ngokwana c. rachamose department of psychology, faculty of humanities, university of the witwatersrand, johannesburg, south africa citation rachamose, n.c., 2025, ‘rural south african mothers’ perspectives on strategies to mitigate cerebral palsy caregiving’, african journal of disability 14(0), a1632. https://doi.org/10.4102/ajod.v14i0.1632 original research rural south african mothers’ perspectives on strategies to mitigate cerebral palsy caregiving ngokwana c. rachamose received: 04 dec. 2024; accepted: 01 apr. 2025; published: 07 july 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: ample evidence suggests that primary caregivers of children with cerebral palsy experience barriers relating to their caregiving role; however, these caregivers also reported encountering factors that facilitate their caregiving experience. objectives: this article aimed to explore factors that facilitate and support caregivers of children living with cerebral palsy in rural south africa. method: an exploratory qualitative research design was employed. purposive convenience and snowball sampling were used to select 10 primary caregivers of children living with cerebral palsy between the ages of 3 years and 18 years. a semi-structured interview was used to collect data. data were analysed using thematic analysis. results: this research identified several factors for facilitating and supporting caregivers of children living with cerebral palsy. these include social support, caregivers’ ability to understand and accept their children’s disability, mental health support and caregivers’ access to resources. conclusion: the study found that caregivers looking after children living with cerebral palsy in rural communities have access to certain support systems that aid their caregiving experiences; however, such systems of support need to be strengthened and sustained to reduce the burden of care. contribution: this article highlights the facilitators and supportive factors of caring for children living with cerebral palsy in rural communities of south africa to inform stakeholders on possible intervention strategies for maternal mental health in the context of raising a child with limiting disabilities. keywords: caregiver; cerebral palsy; facilitator; rural; south africa; support. introduction cerebral palsy (cp) describes a group of ongoing, activity-restricting abnormalities, mostly affecting mobility, muscle tone and postural control caused by an absence of typical progress in the brain of a growing foetus or newborn (hallman-cooper & rocha cabrero 2024). movement abnormalities in individuals with cp are commonly in conjunction with sensory, perceptual, cognitive, communication and behavioural difficulties, along with epilepsy and bone and joint problems (hallman-cooper & rocha cabrero 2024). cerebral palsy can manifest in a variety of ways, including a variable degree of presentation (spastic, athetoid, ataxic, hypotonic and mixed) and functionality (walking, communicating, moving and handling objects, eating, drinking and swallowing) (proctor 2022). this indicates that some children may require minimal assistance with functionality, while others may require more assistance or rely entirely on the caregiver for daily functioning (paulson & vargus-adams 2017). these challenges may lead to a series of psychological problems and even cause chronic sorrow in the primary caregiver, characterised by feelings of disappointment, shame, hopelessness, frustration and exhaustion (nimbalkar et al. 2014). further, caregivers raising children living with cp are exposed to psychosocial problems, including family conflicts, lack of sufficient finances and resources, insufficient information, and experiences of stigma and marginalisation, all of which may affect the family’s quality of life and overall functioning (fairfax et al. 2019; rachamose & harvey 2024). although many previous studies have reported several barriers including financial, psychological, social, health and environmental obstacles among the parents of children with cp (abdullahi & isah 2020; cooper et al. 2024; pretorius & steadman 2018; rachamose & harvey 2025), some recent studies have revealed positive and promising attitudes in these parents (alibakhshi et al. 2021). additionally, it has been demonstrated that a positive attitude, financial aid, religion and adequate support systems are all factors that facilitate the caregiving of children with cp (alibakhshi et al. 2021; davis et al. 2010; mcmanus et al. 2006; pretorius & steadman 2018; thrush & hyder 2014). in other words, certain caregivers have successfully overcome obstacles associated with caring for their children living with cp and returned to ‘normal’ family life with an appropriate support system in place. for instance, in ghana, a study discovered that caregivers depend on social support, including family, neighbours, friends, co-workers and community members, as well as governmental and non-governmental initiatives, to alleviate the burden of providing care and to accomplish their caregiving goals with children living with cp (amin sayed, hamdy abdelmonem & ali ahmed 2021). further, community and caregiver educational programmes have been shown to reduce the burden of caregiving through empowering caregivers (prieto 2020). similarly, non-profit organisations (non-governmental organisations [ngos]) have been found to offer a supportive environment for caregivers of children living with cp in low-resource rural settings in south africa (sa), lesotho, uganda and malawi (bray et al. 2017). non-profit organisations have been found to also foster understanding, optimism, assurance, practical abilities and enhanced familial connections, thereby alleviating feelings of isolation and self-blame (bray et al. 2017). nevertheless, research conducted in rural limpopo has revealed that caregivers of children with cp are burdened with a significant amount of care because of the limited resources, services and support available to them from both governmental and non-governmental organisations (sodi & kgopa 2016). this is despite the fact that their experiences have not been well documented. consequently, the purpose of this article is to explore the facilitators and supportive factors available to caregivers of children living with cp in rural limpopo, sa. a facilitator denotes any element that makes caregiving more manageable (stevenson 2010). theoretical framework the ecological systems theory (est) (bronfenbrenner 1977) was used as a theoretical framework for interpreting and understanding the findings. the est suggests that strategies to mitigate the challenges encountered by caregivers of children living with cp are influenced by multiple interconnected layers that may foster resilience under challenging circumstances; these include the microsystem (immediate environment), mesosystem (connections between environments), macrosystem (social and cultural values), exosystem (indirect environments) and chronosystem (environmental changes over time). research methods and design study design a qualitative exploratory contextual research design was used to gain a more in-depth comprehension of primary caregivers’ experiences of raising a child living with cp in rural communities of the limpopo province of sa. semi-structured, one-on-one interviews were conducted to explore and elicit as much information about the caregivers’ experiences, mental health, barriers and facilitators to caregiving. study setting the study was conducted in three districts (capricorn, sekhukhune and waterberg) of the limpopo province, sa. limpopo is one of sa’s most rural provinces, with almost 80 per cent of the population residing in rural regions or villages. research demonstrates that rural parts of the limpopo province have a greater unemployment rate; people tend to work for lower salaries, have lower levels of education, have a greater percentage of low-income families, and rely heavily on government social grants (such as the old age and child grants) to make ends meet (malatji 2020). this situation presents tremendous socio-economic obstacles that may affect the well-being of the primary caregivers of children living with cp, making it more important to explore their experiences. study population the study population comprised maternal primary caregivers (these included biological mothers, grandmothers, aunts or legal parents who include adoptive or foster mothers who take care of their children living with cp on a full-time basis) as eligible participants; however, only the biological mothers participated. this approach aimed to ensure that the study accurately captured the experiences of individuals who are actively involved in the daily care of children living with cp. further, eligible maternal primary caregivers were above the age of 18 years to ensure that they were of consenting age. the children of the participants were between the ages of 3 years and 18 years of age to encourage the possibility that the caregivers will have some experience to draw on in their interviews, as opposed to caregivers of newborns. further, the children had to be diagnosed with cp as the primary diagnosis, and the diagnosis had to be made by a medical professional such as a general practitioner or paediatrician. finally, the children had to live with the participant, and the participant had to be the primary caregiver of the child residing in the rural community (capricorn, sekhukhune and waterberg) of the limpopo province. there was a total of 10 maternal primary caregivers (all of whom were biological mothers to the children) who were eligible for the study and consented to participate. the maternal primary caregivers in the three districts were selected to highlight the distinct socio-economic and cultural aspects that affect caregiving for a child living with cp. the inclusion criteria allowed direct insights of those involved in everyday caregiving, providing insight into both the barriers and facilitators. the use of purposive convenience and snowball sampling until data saturation allowed for rich, in-depth data exploration, strengthening the study’s rigour. data collection data were collected from consenting maternal primary caregivers using semi-structured, one-on-one interviews. the author developed an interview schedule after reviewing relevant literature on the experiences of caring for a child with cp in rural communities. the interview schedule included core questions as well as clarifying prompts. for instance, question 2 in box 1 (also see appendix 1 for the interview schedule) asks about caregivers’ overall health, accompanied by three probing questions about their physical, mental, and emotional health. box 1: core questions from one-on-one interviews. before data collection, clare harvey (ch) reviewed the interview schedule to ensure that the questions were clear, understandable and capable of answering the research questions. furthermore, the first interview served as a pilot interview; however, no adjustments were made to the interview schedule. all interviews were conducted over the cellphone with consent to record. the author purchased airtime and contacted each participant on their respective cellphones. each interview lasted 45 min – 60 min, at a time that was convenient for each participant. the interviews were conducted in the participants’ preferred languages (primarily sepedi and english), transcribed verbatim, and then translated into english by the author. the author conducted the interviews, transcribed both the english and sepedi interviews, and translated the sepedi interviews. a colleague fluent in sepedi signed the data-sharing contract to facilitate back translation, ensuring the accuracy of the transcription and translation. data collection took place between december 2023 and january 2024. data analysis data were analysed using a six-phase process thematic analysis (braun & clarke 2019). thematic analysis enabled the author to methodically code, categorise and examine large amounts of data. the author used both the inductive and deductive methods of analysis. this was done by analysing data with respect to the themes from the study’s literature review or the research questions. however, any noteworthy or relevant data (themes) that appeared from the transcriptions were also analysed, including unexpected themes, to gain an understanding of the primary caregivers’ experiences. the author categorised the data, which was then checked by ch. the author and ch conducted an additional abstraction of the data to facilitate the development of themes that are pertinent to the study’s objective. ethical considerations before conducting the interviews, an application for full ethical approval was made to the university of the witwatersrand human research ethics committee (medical). the ethics approval number is m230803 m231023-b-0001. ethical standards of informed consent, confidentiality and management of information were adhered to. results table 1 illustrates the demographics of the caregivers interviewed in this study. the biological mothers’ ages range from 34 years to 45 years, with a median age of 40 years. of the caregivers, 50% are single and are unaware of their child’s diagnosis type, while 40% are unemployed. table 1: demographics of the caregivers interviewed in this study. the results of this study are summarised in table 2. table 2: themes and sub-themes. social support many caregivers reported having one or more social support systems to help them cope with raising their children living with cp. these support systems included family, friends, other mothers of children with cp, community members including ngos, and medical professionals. spousal or partner’s support all caregivers in a relationship reported that their partners were incredibly supportive as co-caregivers. eve stated that her unemployed husband is the primary caregiver during the day because she is employed. some caregivers stated that their spouses were a valuable source of income, alleviating the financial burden or compensating for their inability to work: ‘well, i wake up, i bath i go to work, then the child will remain with father and other children because my husband does not work, so he knows him very well and he knows his routine, then i will see him later when i come back from work.’ (eve, p2, 45) ‘i got another one [wheelchair] from dr luke at mediclinic … it was r16 000 … it was expensive but used a medical aid…medical aid is being paid by her father.’ (elisa, p4, 41) support from family and friends caregivers also expressed that receiving assistance from their family and friends aided them in caring for their children. according to their report, friends and family provided significant support during the birth of their children. in addition, the family and friends of the caregivers provided valuable learning experiences and advised them to embrace the circumstances rather than reject their child. the family’s acceptance and love for the child also helped to decrease stress levels: ‘my children help me, my siblings help, my mom helps even though she doesn’t have the patience, my children know him [the child living with cp], so they help feed him, bath him, and they play with him and keep him active, he is never alone, he also likes tv, we all watch cartoons with him, all my kids are okay, we are no longer stressed, we have accepted.’ (maria, p5, 40) ‘the friends we have now, they treat her like their own kids, they are caring and loving, and they understand the circumstances.’ (elisa, p4, 41) support from other caregivers of children with cerebral palsy caregivers also recounted getting support from other caregivers in similar circumstances. some caregivers met during hospital visits, while others met through non-governmental organisation (ngo) initiatives, and this allowed them to form support groups where they could share their experiences, and advice, comfort one another, and share information about resources such as wheelchairs and standing frames. caregivers remarked that this support network helped them feel supported and not alone, despite the fact that some of them are separated by distance: ‘the people who support me are the mothers at the hospital, they helped me with wheelchairs, my child did not have a wheelchair before, they helped get one. they also helped me get the standing frame so that when the child is tired of sitting on the wheelchair, she can use it. they are the ones who support me because they know lot of things.’ (abigail, p8, 34) ‘yes, even the [ngo] helped, we are a group of twenty, twenty parents of children with cp, so having those mothers in a group was helpful.’ (maria, p5, 40) community and non-governmental organisation support according to the caregivers, an ngo provided tremendous support in the sekhukhune district. caregivers reported that the ngo delivered workshops that empowered them and their families, particularly about cp and how to better understand and care for their children. in other districts, caregivers emphasised the importance of the community, including neighbours and churches, in accepting and supporting their children. diana stated that she received a wheelchair from the municipality, which helped her carry her child, a change from using a wheelbarrow: ‘in 2014, [an ngo] came to dilokong hospital … i attended the workshop for three weeks, they taught me what is cp, different levels and types, what is chorea, what is spastic, cp as a way of life, that is why when i came back from that workshop, i came back full of life, it’s like god had restored things, they helped me a lot, the manuals, the pictures. when i got home, i was able to workshop my family especially on spastic because we had a spastic cp at home. they had a better understanding on how to hold, how to lift, how to go around a spastic cp child. that workshop empowered me.’ (diana, p3, 36) ‘i was able to access resources even in the rural [area] because i am not ashamed to talk about my child when i am with strangers. the municipality has donated a proper wheelchair, and the hospital also gave him the wheelchair, so we do push him when we go to shops so he can see people. it’s obviously difficult raising a child in a rural area but it didn’t really impact me because i was able to access those resources … the wheelchair was helpful because my older son used to carry him with a wheelbarrow, now he can use the wheelchair.’ (ruth, p9, 42) medical practitioners’ support other caregivers reported that medical practitioners also served as facilitators. eve described how medical practitioners in her rural clinic collaborate with those in town or a tertiary hospital to provide advanced medical care. other caregivers noted that the physiotherapy department at the local hospital offered them education about cp, including clarification on the myths about cp: ‘from the physio department, they taught us what is cp, how it works, how to accept, they counselled us and even explained that it is not witchcraft.’ (abigail, p8, 34) ‘yes, they [local nurses and doctors] take us to better hospitals in town when they think there is a need. i have travelled many times with other parents to those hospitals where their kids need different special treatment, and they received them … that is why i do not think rural or town matters, they can take these kids to those towns and help us.’ (eve, p2, 45) furthermore, caregivers reported an interest in being active in their child’s disability management. diana contended to understand more about her child’s cp’s presentation than medical professionals, and as a result, she expressed the need to be involved in her child’s treatment. she emphasised the need to be involved in her child’s physiotherapy training: ‘for me, it is involvement and participation in my child’s care, because i know the child better than the doctor, the doctor only sees the child for an hour, but i see him for 31 days, i wish there could be a doctor for speech, to help improve my child speech, for example normal kids they easily know mama and papa, and the rest you can teach them later, but a child with cp you don’t even know where to start to improve their speech. i can see my child is trying to talk but it’s not easy, and i am also not trained to teach my child speech. i need that skill. because most of the children with cp need to be trained on toileting, and speaking, even though they cannot really explain well, as long as the mother can understand what the child is trying to say.’ (diana, p3, 36) understanding and accepting their child’s cerebral palsy understanding and accepting their child’s cp was one of the facilitators mentioned by the primary caregivers. many caregivers attributed their understanding and acceptance of their children’s cp to being exposed to similar children and their children’s better health conditions in comparison to other children with similar disabilities. caregivers expressed that seeing other children with disabilities inspired them to continue caring for their own. other caregivers stated that interacting with other children with disabilities at the hospital helped them accept their children’s disability. many caregivers emphasised the importance of seeing other children in hospitals, including those with hydrocephalus and other limiting disabilities, to understand that they are not alone in experiencing the disability: ‘i think going to other hospitals and seeing other children in the big hospitals … you see that it’s not just your child, and maybe your child is better. you even see worse conditions, some with hydrocephalus, some who can’t do anything, you will see that you are just having too much stress for nothing, and these kids are now many, and it’s not just our children, even white and indian kids i have also seen, so seeing that there are other children, and i am not alone.’ (maria, p5, 40) ‘i would go to the hospital and i saw other children and i started accepting because i could see that i was not the only one, because where i stayed you hardly see such things or any child with disabilities, i had never seen a child with disabilities, she was the first i saw and the ones i saw at the hospital.’ (abigail, p8, 34) several caregivers also stated that accepting their children’s disability helped them feel better. they highlighted that, while it took them some time to accept, and others are still working on it, many caregivers have noticed an improvement in their mental health as a result of accepting their children’s cp. they explained that they are gradually learning to live like other people who do not have children with disabilities: ‘at first, it was so hard that i even felt like the world could just open and i enter, but since i have managed to accept, life has moved on, there is no problem, i live like everyone, even like those who do not have children with cp, i sometimes even look better than them.’ (maria, p5, 40) ‘i realised others love their children, even saw on facebook where they post them and show them love and i was motivated to also accept mine and give her motherly love.’ (johanna, p6, 45) mental health support many caregivers expressed the need for mental health support. caregivers acknowledged a need for counselling to manage difficult and frustrating feelings and emotions while caregiving: ‘eish, i don’t know, the biggest thing that bothers me is my heart, i am complaining a lot, i am thinking a lot, i don’t know what they can do to help me.’ (eve, p2, 45) ‘please i really need counselling from time to time because somethings i would like to talk to someone to navigate some things that i can’t really talk to anyone with.’ (abigail, p8, 34) ‘yes, people talk, but most times things are not directly said to me, but they get to me, but i just ignore them, you will not even see if i am not okay, but i am hurting, and i just need someone to talk who can understand me.’ (johanna, p6, 45) caregivers’ access to resources caregivers also identified the need for resource assistance as an additional support strategy. caregivers expressed a need for a monthly supply of nappies or diapers and mobility aids, including wheelchairs, standing frames and special food items, to alleviate the financial burden. they also requested specialised schools to allow them a respite from full time care of their child with cp: ‘things like a wheelchair, we need wheelchairs to support, to support our children, especially for kids my age and with this type of cp, we recently saw this wheelchair that you can feed, bath and sleep your child on, but it is expensive. now he is 15, next year he is turning 16, he must go and make his id, he needs a wheelchair … some other things we can raise them but they will say we are unreasonable, things like pampers, they will tell you that you get sassa [south african social security agency] for this child. he is old, i am buying size 6, and … that six is r200 and they are 28 in number, and i have to buy 2 from r400, then i have to buy special food like nespray milk, weet-bix, soft food, they are picky these children.’ (maria, p5, 40) ‘i would be happy if we had schools that would accommodate our children. my child is intellectually fine, she is just paralysed on the legs, she can speak, she understands, and she can’t walk, but i think she can learn like other normal children, i just need a special school that can accommodate her because there is no point of her staying at home while she is able to learn like other children. i can even give her my phone and you speak to her; you will hear that she is well intellectually. so, i need a school.’ (magdaline, p10, 38) ‘it’s definitely school, i have walked around looking for a school. they all ask me the same question, can she take herself to the bathroom, and she can’t, so they decline her … what i need, i wish i could find schools for children with cp around this area, especially for children with similar conditions to mine … i think what will be great to assist me, is if she can get a special school where she can attend a few hours a day so that she can get stimulated, and have peers over.’ (abigail, p8, 34) discussion research shows that while caring for children living with cp comes with many obstacles including physical, financial, social, emotional, spiritual and health barriers (dlamini, chang & nguyen 2023; eyong, ekanem & asindi 2017; madzhie et al. 2022; rachamose & harvey 2024; singogo, mweshi & rhoda 2015; smith & blamires 2022), caregivers also have facilitators that make their caregiving processes bearable (alibakhshi et al. 2021; cooper et al. 2024; pfeifer et al. 2014; pretorius & steadman 2018; raphulu et al. 2021). the est provides a theoretical framework for explaining and understanding the barriers and facilitators of caring for a child with cp by exploring caregiving across multiple interconnected levels of influence, such as micro, meso, macro, exo and chrono systems (bronfenbrenner 1977). these include social support from broader social contexts as well as caregivers’ understanding and acceptance of their children’s cp. caregivers in this study also proposed additional facilitators and supportive factors that can make their lives and that of their children better, and these include mental health support and caregiver resources provision. the findings of this study are consistent with previous research which has demonstrated that at the microsystem which encompasses the immediate environment of caregivers (family, close friends and neighbours), social support can be a protective factor during stressful events and can be a significant predictor of parental adjustment in the face of stress associated with the birth of a disabled child (pfeifer et al. 2014). this was shown in this study, where many caregivers who had some form of support from either friends, family and/or community reported adjusting well to their caregiving role compared to those who reported having no one who expressed feeling isolated, helpless and alone (rachamose & harvey 2024). this suggests that social support assists caregivers to understand and care for those with disabilities in helpful ways (phumudzo, shirindi & makofane 2021). they help to transform a sense of hopelessness, isolation and guilt into pride, acceptance and increased self-confidence (saloojee & bezuidenhout 2020). many mothers also reported appreciating any form of support received, even though most support was mainly provided by those from the core family (husband, mother, siblings, children) (milbrath et al. 2008). this shows that caregivers consider the quality of support as more important than the number of people who give this support (pfeifer et al. 2014). at the mesosystem that denotes interactions between microsystems, such as interactions between the caregiver and health institutions, understanding and accepting their child’s cp in this study played a huge role as a facilitator in caring for a child living with cp. the overall well-being of caregivers in this study was reported to improve when they understood their children’s diagnosis and when they saw that they were not the only ones with children with cp. a finding similar to that of guillamón et al. (2013) and rachamose and harvey (2024) who found that after the diagnosis, parents seem to be more eager for information related to the causes of the disorder and possible impairments, therapies and prognostics. further, when caregivers were clear about their children’s diagnosis, they reported having a positive attitude towards their children’s disabilities. this finding aligns with that of alibakhshi et al. (2021), which showed that positive attitudes and beliefs are factors responsible for promoting acceptance in caregivers of children with cp. positive beliefs seem to be effective in reducing stress, creating resilience and improving parents’ mental health in the case of raising a child living with a disability (mbatha & mokwena 2023). spiritual beliefs as part of the macrosystem, which includes broader cultural values, beliefs and ideologies, were prevalent in this study. it is important to note, however, that spiritual beliefs in this study were both a barrier and a facilitator at the same time. many caregivers believed that it was god’s will that they had children with cp and had hopes that god would heal their children; however, it also seemed that they felt they were being punished, a finding similar to existing research (rachamose & harvey 2024). a finding similar to that of chataika (2013) shows that certain african nations continue to see disability as a punishment inflicted by ancestral spirits dissatisfied with a family or person, or as a consequence of witchcraft, where grievances must be addressed. although beneficial at times, these beliefs also resulted in the stigmatisation of primary caregivers of children with disabilities and their families (pretorius & steadman 2018) such that caregivers will be unwilling to form social relationships because of decreased mood and problems faced in the social and professional spheres (pfeifer et al. 2014). within the exosystem, encompassing environments that indirectly affect the individual, such as access to healthcare or resources, mental health support was identified as one of the proposed facilitators by the primary caregivers in this study. a finding also identified by guimarães et al. (2023) states that one of the parental challenges of caring for children with cp is the internal challenge of mental health related to increased risk of experiencing high stress, anxiety and depression (rachamose & harvey 2024). as such, parents get involved in crucial needs of information, support and personal well-being services available in the community, such as rehabilitation centres and emotional and/or physical growth and development (buran et al. 2009). many caregivers in the present study reported not knowing where to access mental health services, they only remember receiving one-time counselling services during their children’s diagnosis. this is because access to mental health services remains an international challenge, especially in rural and underserved areas (bray et al. 2017; saloojee & bezuidenhout 2020). consequently, the majority of caregivers of children with disabilities have limited access to interventions that promote mental well-being (iemmi et al. 2016). regardless, the present study showed that few caregivers received psychological support from community-based rehabilitation and have reported a significant turnaround in their mental health as a result. previous literature has shown that community-based rehabilitation, such as parent-to-parent peer support for parents of children with disabilities, has been found to improve emotional and psychosocial well-being (bray et al. 2017). consequently, it is imperative to implement and provide support for mental health initiatives that are centred around the family and community. additionally, healthcare professionals must plan and be proactive in providing medical and social support for children living with cp and their families (liddle et al. 2018). finally, at the chronosystem, that is, the broader society and policy level, caregivers proposed the provision of resources such as finances and specialised schools as facilitators to caring for their children. previous studies have shown that in africa, poverty significantly impeded the ability of caregivers to provide basic needs for their children with disabilities (donald et al. 2014; pretorius & steadman 2018). the huge expenses of medical treatment, therapy, assistive devices and transportation significantly contributed to caregivers’ lack of access to care (rachamose & harvey 2024). as a result, caregivers benefited from several social policies that had been implemented to address inequality among individuals living with disabilities (pretorius & steadman 2018). in an effort to enhance healthcare accessibility, the south african government implemented a policy that ensures free healthcare services to pensioners, expectant women, individuals living with disabilities and children under the age of 6 years (barratt & penn 2009). additionally, individuals with special needs have been provided access to grants (barratt & penn 2009). despite government financial assistance often being the only source of income and being inadequate to meet the family’s needs, caregivers considered it one of the most significant facilitators of caregiving (pretorius & steadman 2018). therefore, the provision of specialised cp schools, food and financial aid may mitigate the challenges arising from the scarcity of resources. a more effective approach to support these caregivers may include facilitating their engagement in income-generating activities by providing them with time. the provision of respite services and the construction of daycare facilities and special schooling for children with disabilities may provide caregivers more time to seek employment (pretorius & steadman 2018). the literature underscores the need for respite programmes as caregivers often experience relief from their duties only when their child is at a care facility or school for extended hours every day or week (pizano-vega et al. 2020). while most of the caregivers in this study had difficulties obtaining sufficient respite services, a few successfully located a suitable care facility for their child within their neighbourhood. the caregivers acknowledged the significance of their child’s crèche, school or daycare as they appreciated the time off from their caregiving responsibilities that these institutions provided (ayob, christopher & naidoo 2021). limitations and recommendations the main limitation of this study is the inclusion of caregivers exclusively from one province, specifically, biological mothers. this study is limited to a single perspective despite the provision of valuable insights regarding location-specific facilitators and supportive factors. therefore, future studies should focus on assessing the effectiveness of mental health interventions, financial assistance programmes and ngo support initiatives for caregivers. additionally, examining how policies can more effectively assist caregivers, particularly regarding access to cp-specialised education, healthcare and respite services, may enhance government and ngo strategies. conclusion this study demonstrated that the caregiving of a child living with cp in limpopo comes with numerous obstacles, including inadequate access to essential resources. nevertheless, caregivers in this study reported that they were able to benefit from supportive and facilitative factors, including family, friends, community members, ngos and medical practitioners. these individuals played a critical role in educating, supporting and empowering them. this suggests the need to strengthen facilitators and supportive factors available for caregivers. this can be accomplished by involving all family members in the child’s care management alongside the mother. additionally, efforts may be increased to enhance community-level awareness of neurological disabilities such as cp, ensuring a broader social understanding of cp and how community members can contribute to the well-being of primary caregivers. in addition, ngos that provide support to primary caregivers of children with limiting disabilities must receive financial support to extend their services into various rural regions, as caregivers who had their support reported much more understanding of the cp than those without any ngo presence. furthermore, caregivers identified the need to access continuous mental health care and cp-specialised schools in rural areas. mental health and respite services should be prioritised to alleviate the psychological burden of caregiving and provide relief to caregivers. acknowledgements the author would like to express gratitude and recognise the resilience and strength of all the caregivers who contributed to this study. in addition, the author would like to extend gratitude to malamulele onwards for their assistance in recruiting participants, which was greatly aided by the parent facilitators. the national research foundation (nrf) is acknowledged for financing the author’s phd dissertation titled ‘the mental health of maternal primary caregivers of children living with cp in rural communities of the limpopo province, south africa’. lastly, the author would like to express her gratitude to prof. clare harvey, her phd supervisor, for the invaluable guidance and support she provided throughout her studies. this article is partially based on the author’s thesis titled ‘the mental health of maternal primary caregivers of children living with cp in rural communities of the limpopo province, south africa’ for the degree of doctor of philosophy in psychology at the department of psychology, university of the witwatersrand, south africa, with promoter prof. clare harvey. the phd is currently awaiting examination. competing interests the author reported that she received funding from the national research foundation, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. author’s contributions n.c.r. is the sole author of this research article. funding information the national research foundation (nrf) is acknowledged for financing the author’s phd dissertation. data availability the data that support the findings of this study are available on request from the corresponding author, n.c.r. the data are not publicly available as this is an ongoing phd study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s results, findings and content. references abdullahi, a. & isah, a., 2020, ‘caregiver’s perspectives on facilitators 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(ed.), 2010, oxford dictionary of english, 3rd edn., oxford university press, oxford. thrush, a. & hyder, a.a., 2014, ‘the neglected burden of caregiving in lowand middle-income countries’, disability and health journal 7(3), 262–272. https://doi.org/10.1016/j.dhjo.2014.01.003 appendix 1: interview schedule what is your age? do you work, and if so, what do you do? who do you live with? how old is your child with cerebral palsy? what is your child’s gender? do you have any other children? ages? what was your pregnancy and birth like with your child living with cp? how was this for you emotionally? when was your child diagnosed with cp? can you tell me about this process, including how this diagnosis came about? what do you remember about this time, including how you felt? what do you understand about cp? how did you learn about this? what was it like finding out about your child’s disability? who did you talk to after finding out about your child’s disability? what was this like for you? what were other people’s responses towards you and your child? how did you manage these feelings and reactions? how is the relationship like between you and your child? what is it like raising your child, specifically with regards to their cp? what does your day-to-day routine look like? how has your child’s disability impacted your life? physically, mentally, emotionally, socially? what are the challenges you face raising your child living with cp? who is helping you raise your child, if anyone? what is helpful, unhelpful about this? what other kinds of support systems do you have? can you elaborate on these? how did these come about? what is helpful about them? what motivates you to keep looking after your child? how does raising your child in a rural area, specifically, impact your role as a maternal caregiver of a child with a disability, specifically, cp? what access do you have for support services with regards to raising your child living with cp? how is your overall health? physically, mentally and emotionally? what kind of professional assistance for yourself, if any, are you regularly receiving? can you elaborate on this. what do you think can be (further) done to help you raise your child? what do you think can be done to make things easier for you? is there anything else you would like to share that i may not have asked? do you have any questions? are you feeling okay to finish the interview now? abstract introduction inclusive education and full-service schools differentiated instruction research methods and design discussion recommendations and implications limitations conclusion acknowledgements references about the author(s) thembi a. phala department of early childhood education, college of education, university of south africa, pretoria, south africa anna j. hugo department of language education, arts and culture, college of education, university of south africa, pretoria, south africa citation phala, t.a. & hugo, a.j., 2025, ‘differentiated instruction for grade 3 reading challenges: south african teachers in full-service schools’, african journal of disability 14(0), a1549. https://doi.org/10.4102/ajod.v14i0.1549 original research differentiated instruction for grade 3 reading challenges: south african teachers in full-service schools thembi a. phala, anna j. hugo received: 07 aug. 2024; accepted: 18 feb. 2025; published: 16 may 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: we analysed the use of differentiated reading support by grade 3 teachers and learning support teachers to help learners with barriers to reading in three full-service schools in tshwane north district in gauteng province, south africa. objectives: the study explored how grade 3 teachers and learning support teachers in full-service schools implement differentiated instruction to support learners with reading difficulties in their classrooms. method: a qualitative approach with a case study design was used to collect data from 11 grade 3 class teachers and 6 learning support teachers in three full-service schools. data were obtained using semi-structured interviews and classroom observations; thus, an interpretivist paradigm was followed. results: the findings showed that different strategies were employed by the participants, but some of the finer applications of differentiated instruction were unused. the following themes emerged: choosing different reading materials as content, the process during the teaching of reading, the product in the teaching of reading, the learning environment and the need for in-service teacher training. conclusion: the results highlighted the difficulties inherent in using differentiated instruction based on grade 3 learners’ reading needs. many of the learners had specific barriers to reading. contribution: the study contributes to the literature on methods of teaching reading in grade 3 classes. it captures the need for teacher professional development regarding using the finer applications of differentiated instruction in the classroom. keywords: full-service schools; grade 3 learners; different reading materials as content; process and product in the teaching of reading; learning environment; in-service teacher training. introduction the authors opine that it is a worldwide phenomenon that one of the better changes that occurred over the past 30 years in society and especially in education is the introduction and growth of inclusive education. inclusive education adheres to the principles that all children irrespective of their abilities or disabilities should be accommodated in schools and their diverse learning needs should be recognised and attended to. the diversity among learners in classrooms is presented by the different learning needs that learners have. one of the biggest learning needs that young learners have is support in developing their reading abilities. reading is a fundamental ability for people to achieve success in life. the reason for failure in academic subjects at schools can often be found in inadequate reading abilities (nel & nel 2022:121). keyes et al. (2017:9) aptly state: ‘reading is the most fundamental skill one must learn while in school. however, difficulty in reading proficiently abounds’. it is thus necessary to attend to the gap in research about approaches to address the inadequate reading abilities of the learners. learners who struggle with written text usually read one or more years below their current required grade level without being identified with any learning difficulty (hall 2009). according to the 2023 progress in international reading literacy study (pirls), 81% of south african grade 4 learners are experiencing major challenges when decoding and cannot read with understanding in any language (mullis et al. 2023). the question arises of whether teachers are ready and trained to support learners with diverse learning barriers, especially reading barriers. we collected data from grade 3 class teachers and learning support teachers in full-service schools about the methods that they employ to address learners’ reading barriers in their classrooms. also, we reported on their initiatives to use differentiated instruction to support learners with reading barriers in their classrooms. inclusive education and full-service schools the main vision of inclusive education is captured well in the 2015 sustainable development goal 4 of unesco: ‘ensure inclusive and equitable education and promote lifelong learning opportunities for all’ (nel, nel & hugo 2022:7). with regard to africa, phasha, mahlo and dei (2017:3–4) opine that inclusive education should also attend to anti-colonial, de-colonial and integrative views. one of the questions arising from this understanding is how to establish a view of inclusion and social justice in schools that includes the emotional and socio-environmental facets of all learners. inclusive education denotes that all children, irrespective of their disabilities, also referred to as impairments, have a right to education in mainstream schools. there are many forms of impairments that could lead to a breakdown in learning. the factors that could be the reasons for a breakdown in the learning process can be classified into two main categories: intrinsic barriers to learning and extrinsic barriers to learning. intrinsic barriers refer to conditions within a learner, such as blindness, hard of hearing or epilepsy. extrinsic barriers are conditions outside a learner, such as socioeconomic barriers, the family and school system and a lack of amenities. reading problems could also be an extrinsic barrier to learning (nel, nel & hugo 2016:10, 21–22.). the issue of accommodating learners with barriers to learning and development in schools is an issue of concern in south africa, and policies have been put in place to address it. the department of education (doe) adopted the policy of inclusive education in 2001. this policy aims at addressing issues of access and allows schools to be more inclusive in their practices. in response to the policy, some of the mainstream primary schools were converted into full-service schools (fsss). department of basic education (dbe) (2010:21) reports that fsss are former mainstream schools that accommodate learners who require low to moderate levels of support. learners who require low levels of support refer to those learners who need psychosocial support and have visual or auditory processing challenges. learners who require moderate levels of support have mild hearing or visual impairment, cognitive impairment, epilepsy and cerebral palsy, as well as dyslexia, attention deficit and hyperactivity disorder (gauteng department of education [gde] 2011:15–16). learners who have reading barriers fall under this category. to ensure that fss teachers are skilled and knowledgeable to support all learners in their classrooms, the gde has provided these teachers with the opportunity to participate in different programmes (gde 2010:11). despite such government intervention, numerous studies conducted in south africa revealed that learners are struggling to read, including grade 3 learners (department of basic education 2014b). policies in education are constantly changing, and one of the biggest changes that occurred is the growth of inclusive education in many countries, including south africa. finkelstein, sharma and furlonger (2021:735) claim that five aspects of inclusive education allow teachers to design lessons to undo barriers to learning and teaching for learners who have special needs in education, including an instructional practice, which entails how the teaching and learning processes are organised. this is where differentiated instruction comes in. differentiated instruction there is a worldwide trend for people to move from urban areas to more densely populated areas, which contributes to making the learner population more diverse. another tendency is to flee across the borders of countries, which gives rise to an even bigger diversity of learners and their needs. learners in many schools thus vary greatly in terms of their cultural backgrounds, language competencies, learning styles, motivation and school performance, necessitating teachers to apply differentiation when teaching diverse learners with diverse educational needs (pozas, letzel & schneider 2020). in south africa, the various home languages of learners, including the home languages of children of legal and especially illegal immigrants, could be added, as well as learners’ competencies in english as a second language, the language of instruction in most schools. learners thus come from diverse backgrounds with diverse learning and teaching needs. tomlinson, the foremost pioneer of differentiated instruction (di), defines it as an inclusive and flexible process that includes the planning, preparation and delivery of instruction to address the diversity of students’ learning needs within the classroom (tomlinson 2016). similarly, coubergs et al. (2017:41) emphasise that di is not a single teaching strategy but ‘a praxis of teaching a variety of empirically supported strategies across the areas of curriculum planning, assessment and monitoring, instruction, and classroom organisation’. differentiated instruction is, therefore, based on the premise that no single teaching strategy can be effective for all learners, especially if the teaching strategy does not fit the learners’ readiness levels, interests and preferred modes of learning (tomlinson 2016). groenewald et al. (2024) did a systematic review and meta-analysis about the success of using di to improve the learning outcomes of learners in different locations. the research showed major positive impacts of di on learners’ academic achievements and subject-related abilities. the influence of regional differences was also evident. the outcomes underlined the important role that di could play in promoting inclusive education. additionally, di has received much attention from different scholars on its effectiveness in improving learners’ reading achievement, especially reading comprehension (deunk et al. 2015). a study conducted by magableh and abdullah (2020) in jordan about the effect of differentiated instruction on reading comprehension achievement revealed that di was effective in increasing reading achievement scores in english. similarly, reis et al. (2011) studied the effect of di and enrichment pedagogy on reading achievement in five elementary schools across the united states, whose findings indicated that an enrichment reading approach, with di and less whole-group instruction, was as effective as or more effective than a traditional whole-group basal approach. teachers need to design different activities or differentiate activities according to the learners’ individual learning needs. the role of teachers in a classroom where differentiation is applied, is, therefore, not only to convey the content knowledge but to facilitate the learning process. thus, they need to differentiate the instructions in such a way that all learners benefit (heacox 2012:10). in classrooms, teachers can differentiate the following key components in their teaching: content, process, product and learning environment (heacox 2012:10–11). these components are reiterated by tomlinson (2017:1), stating that they help to make the teaching situation learner-centred and proactive, leading to curriculum differentiation. the key components are also captured in the policies of the dbe in south africa. content relates to what teachers need to teach, implying what the learners need to learn, know, understand and do (dbe 2011:8). process entails the strategies, teaching methods, learning support materials, activities engaging in the learning and strengthening of the understanding (dbe 2015:72). product indicates how learners demonstrate what they are learning or have learned (dbe 2015:72). learning environment indicates the site where learning is taking place (dbe 2014a:12). this includes both the physical and psychological learning environment. ineffective implementation of policies often happens in south africa. asriadi et al. (2023) advise that the effective implementation of di depends on the educational setting in a country. although di could be used well in any educational setting, its successful outcomes depend on the influences of the milieu. research methods and design a qualitative research approach with a case study design was used in this study. according to bertram and christiansen (2016:26), a case study design could provide an understanding of how people understand the contexts within which they live and work. the case study design helped the authors to look at the chosen schools within which the teachers performed their work in a bounded setting. purposeful sampling was used to ensure that all the participants were well-trained teachers with years of teaching experience. in this study, three fsss from the same district were included. grade 3 class teachers and learning support teachers in three fsss in tshwane south district, gauteng province, south africa, were suggested by the gde’s chief education specialist to participate in the study. these schools were referred to as schools a, b and c. all schools had basic infrastructure and classroom furniture. sepedi and isizulu, two of the official languages in south africa, were used as the languages of learning and teaching, except in school c, where english was used. the participants were selected based on their experience in teaching grade 3 learners, training received to support learners with reading problems using differentiation instruction and their availability and willingness to participate in the study. seventeen grade 3 teachers, comprising 6 learner support teachers and 11 grade 3 class teachers, were selected. an additional grade 3 teacher from the neighbouring fss was also involved during the pilot study. a pilot study was conducted before the actual research took place to test the research questions and identify questions that could be unclear. this resulted in the revision of some questions. in this study, lst refers to a learner support teacher, and gr3ct refers to a grade 3 class teacher. all participants were females and professionally trained as teachers. the participants were, however, different in terms of their home language, qualifications and years of teaching experience in teaching grade 3 in a fss. trustworthiness must be considered to assess the quality and the value of a research project using qualitative data. we considered the four criteria, as described by lincoln and guba, to establish whether the findings of the study reflected the aims of the study: credibility, dependability, confirmability and transferability (alexander 2019). data collection method the data for the study was gathered in grade 3 reading classes through semi-structured interviews and classroom observations. semi-structured interviews were scheduled with the participants for an hour for 3 weeks after normal teaching hours. the semi-structured interviews comprised open-ended questions. the open-ended questions were designed based on a literature review about reading and di that we conducted. the comments on the questions of a knowledgeable colleague were also attended to. this type of interview allowed the participants to express their personal views and understanding of how they, as gr3cts and lsts in fsss, used di to support learners with barriers to reading. in addition to the semi-structured interviews, classroom observations were conducted depending on the availability of participants and the school periods when reading classes are offered. we carefully worked through the classroom observations to identify themes. the themes arising from the classroom observations were triangulated with the themes from the semi-structured interviews. we avoided potential biases of participants by randomly selecting the names of possible participants provided by the district official. all the data were kept in a locked cupboard in a locked office. this study was framed by vygotsky’s socio-cultural theory. this theory describes the concept of the zone of proximal development (zpd), mediation and cultural tools. the zpd defines the distance between a learner’s current level of development and the potential level of development that can be attained through mediation and the support of able adults or peers (shabani et al. 2010:237–238). thus, a teacher can ensure that effective teaching takes place by using, for instance, di in the classroom so that the level of reading development of a learner or a group of learners could be considered in the planning of reading. data analysis data analysis is a technique used to structure, bring order and give meaning to data collected (ed. de vos 2015:397). for this study, a thematic content analysis was used to analyse data. before we analysed the data, we read and reread it to identify the units of meaning and cluster them. from the analysis, five themes about differentiated instruction to teach reading were identified. we discussed the themes in the findings section. ethical considerations ethical clearance to conduct this study was obtained from the university of south africa college of education ethics review committee (no. 2017/05/17/30112508/17/mc). to ensure confidentiality, the names of participants were not used at all. written consent was obtained from the gde and the principals of the schools. the lsts and gr3cts who acted as participants also completed written consent forms. results the study explored how grade 3 teachers and learner support teachers in three ffss used differentiated instruction when teaching reading and supporting learners with barriers to reading. the principal finding was that the participating teachers understood most of the principles of differentiated instruction to support learners with reading problems. there were, however, some of the finer applications of di that they could have used. this article reports on five themes about di emanating from the study, including the need for teachers for specific training in di (see table 1). table 1: summary of themes. theme 1: choosing different reading materials as content when planning reading lessons it could be difficult for teachers to plan various lessons according to the abilities and needs of different learners because teachers also must adhere to the curriculum requirements and content of the department of education. it was clear that the participants understood that they had to differentiate the choice of reading materials for their grade 3 learners who were having problems reading grade 3-level texts. most of the participants grouped their learners according to their reading levels, and they supplied reading materials according to the reading levels of the learners, thus taking the levels of reading development of the learners into consideration. this group of participants also applied the educational principle to move from the known, which is what the learners could read, to more difficult sections and words unknown to the learners. one of the participants said that she usually used a ‘lower book’ for learners who could not read. she would use books like ‘sounds like fun’ because these books have basic words consisting of three letters (gr3ct9, female, primary school teacher). another participant used curriculum differentiation because, in each group, there were learners who were at the same level. they would read a paragraph containing words with an ‘a’ sound. if perhaps they planned to read a paragraph with most words with an ‘a’ sound, she would write the words in the learners’ home language for those learners who could not read. examples were ‘apeya’ (cook) and ‘apolo’ (apple), and she would also have pictures to explain the words. for those who could read, she would give them a paragraph to read because they understood what she was saying. if these learners had to point to a word such as ‘akanya’ (think), they could do it (lst2, female, primary school teacher). participant lst4 mentioned the use of different books based on the reading levels of the learners, stating that she sometimes used different books to cater for different learners. she gave those learners extra books so that they could read at home with their parents assisting them (lst4, female, primary school teacher). lst6 made provision for a learner’s reading interests. she explained that she planned the reading support using pictures and simple storybooks. she would then give a learner an opportunity to choose what he or she wanted to read as the learners’ interests differed. thus, variety in the reading material was provided (lst6, female, primary school teacher). during the observations, it was noticed that in all classes, the teachers pasted different charts, for example, alphabet charts, phonic charts and number charts, on the walls. the alphabet-pasted charts had capital and small letters of the alphabet. this assisted learners in knowing and recognising all the letters and knowing how to write each letter. the phonic charts consisted of the first letter of a word, such as ‘a’ with a picture of an apple or ‘b’ with a picture of a boy. the use of these phonic charts was problematic in two of the schools because the learners’ home languages as the languages of teaching and learning were not english. one of the lsts had, however, created her own animal chart. there were pictures aligned with the topic that she was teaching. this teacher pasted a chart illustrating different animals on the wall, such as ‘tlou’ (elephant) and ‘kwena’ (crocodile). the teacher also used the picture of the ‘kwena’ to emphasise the sound ‘kw’ that she was teaching (lst1, female, primary school teacher). theme 2: the process during the teaching of reading to the grade 3 learners the study revealed that all the teacher participants followed the mixed ability grouping when they taught reading. they differed, however, in the way they implemented the concept and in the way it was used. the following excerpts serve as examples. participant grtct2 downgraded the lesson by moving down a grade. instead of using grade 3 materials, she would use grade 2 materials. there was no use for her as a teacher to move forward when some learners were still struggling with a certain letter. by differentiating the content in a lesson, struggling learners were able to read, leaving out emphasis on capital letters and punctuation (grtct2, female, primary school teacher). because this participant helped her learners to be successful when they read, this could serve as an important way to motivate the learners who have reading problems to read. participant lst6 took it further when stating that she normally started with the pictures. then, the learners got a chance to say anything that they thought the pictures were about. afterwards, lst6 read the story. then, she placed the words next to the pictures and read the words. the learners then read after her. next, she worked with the learners in groups (lst6, female, primary school teacher). the participants who used grouping in the study made use of the intentional composition of learners working or actually reading groups (pozas et al. 2020). the authors opine that the organised heterogeneous groups should be based on reading performance of the learners. one basic lesson in which different activities are built in could be a solution. regarding differentiating reading activities, one participant, an lst, used one lesson for the class, but she differentiated the activities (lst1, female, primary school teacher). participant lst2 used differentiation to help learners who were at grade 3 level and had problems with the sounds of their home language. she planned the lessons for the learners’ level of needs. for those learners who struggled a lot, she put more effort into their lessons by helping them to differentiate the different sounds or to learn sounds (lst2, female, primary school teacher). participant lst3 said that not all the lessons could be one-size-fits-all. she had to plan well, as learners’ potential was not the same. learners did not grasp new or unknown language at the same level. curriculum differentiation allowed her to plan according to the learners’ abilities. she avoided it to give the slow learners more activities because their concentration span was short and too many activities would only frustrate them. working with the second group, she gave them the little work that she had done with the first group, adding a little more work to them until this group was at the same level as the last group. when the last group was familiar with the new texts, they were ready to go to their class, as they did not need the support of a learning support teacher anymore (lst3, female, primary school teacher). another participant who was a grade 3 classroom teacher explained that when she planned for reading, she also planned for other things: ‘you know, when i plan reading, i plan reading as i plan for other things. she remembered that her learners were not the same. sometimes she realised that when some learners were busy with three letters, others were busy with one letter, and others were dealing with two letters. so, when she planned her lesson, she used one lesson but with different parts. in this way, one lesson catered for different learners and their different learning needs.’ (gr3ct3, female, primary school teacher) the same teacher explained that when, for instance, she used the diphthong ‘thwa’ (in the mother tongue sepedi of the learners) in sentences to her class, she would at first only teach just the letter ‘t’ in words or in sentences to the learners with reading problems. theme 3: the product in the teaching of reading to grade 3 learners it is explained in the screening, identification, assessment and support (sias) policy, which is a manual for teachers of the dbe. the product indicates ways by which the learners will communicate learning and understanding. this means that during baseline assessment or informal assessment, learners will demonstrate what they are learning or have learnt (dbe 2015:72). thus, specific reading lessons according to the reading needs based on the assessment of specific learners or a learner could be planned so that differentiated instruction is applied. participant lst5 explained that before she did the planning, she went to the classrooms to check the programmes class teachers were doing before they sent learners with reading problems to her. if she realised that a learner or group of learners knew certain letters and sounds, she would then start with blends. then, they would take a reading programme or story concentrating on blends. afterwards, the learner or learners would read after she had read. this would help her to see if learners were still struggling or whether they could be improving (lst5, female, primary school teacher). participant lst3 ensured that the learners that she helped knew all the letters and sounds of the alphabet, especially the vowels and the role of vowels in words. she would leave out a vowel in a word to assess if learners know for instance the vowel ‘a’. instead of writing ‘katse’ (cat) she would write ‘k…tse’. by doing this she could check if the learners realised that something was missing, and the word is not a ‘katse’ anymore without the letter a (lst3, female, primary school teacher). theme 4: the learning environment the site and thus the learning environment where instruction and, specifically reading instruction, takes place must be considered as well. this entails both the physical and psychological learning environment. the learning environment could play an important role in the planning and success of di to enhance the teaching of reading. the learning environment of a classroom entails the ‘climate’ or the ‘tone’ of a classroom, which includes things like the arrangement of the furniture, the lighting and whether the classroom is conducive to teaching and learning to take place. during observation, we noticed each lst supported a group of 12 learners. the learners were seated in groups of three in five lst classes. in lts3’s class, the learners were seated in rows. each group of learners were supported once a day. all the classes were print-rich, with different charts pasted on the wall. there was also a reading corner in all the classes to allow for independent reading, and each learner had a reading book (phala 2019:172–176). in grade 3 classes, the seating arrangement of learners was different. in all 11 classes, the learners were seated in groups with two desks facing each other to accommodate a larger group. the number of learners in these classes ranged from 32 learners to 49 learners. all classes had a mobile library used as a reading corner. during the reading support, all teachers used a big book to read the story from, while the learners used the photocopied story to read. the researchers noticed that there were readers in the mobile libraries, but the learners were not provided with these readers during a reading lesson (phala 2019:172–176). peer teaching has been used by many teachers because learners usually normally understand each other well. in the study, peer teaching was also mentioned. one learning support teacher (lst4) said: ‘in class, we sometimes make a competition where learners have to read with fellow learners. if that learner is not doing well, the peer will also advise and read in front of that learner so that the learner can be motivated. or sometimes they help them to read together, and then that is how i do my support in class.’ (lst4, female, primary school teacher) theme 5: the need for in-service teacher training regarding differentiated instruction the introduction of fsss in the south african school system meant that teachers, lsts and the management of schools must be trained to understand what fsss entail. the need for in-service teacher training was stated in 2008 in the national policy framework for teacher education and development (npfted) (doe 2008:3). the main aim of the policy is to improve teachers’ professional competency so that they would be able to address learners’ specific needs to help them to better their performance at school (doe 2008:7–8). the need for in-service training by the fss teacher participants arose from the study. a grade 3 classroom teacher (gr3ct4) said that they were always in need of support in the form of in-service training because there were always those learners who experienced different problems every year. she needed support from the district on how to deal with learners with severe writing and reading difficulties, thus: ‘with reading, i have tried so many methods, so i need training through workshops on how to make these learners understand phonics. now, in our workshops, they only tell us the things that we know, not something new.’ (gr3ct4, female, primary school teacher) it was evident that this teacher had difficulties in knowing how to differentiate her teaching when dealing with learners with serious writing and reading problems. this was reiterated by another gr3ct (gr3ct5, female, primary school teacher), who opined that training in the learner support programmes could be useful, especially on different methods to be used when dealing with reading problems. she said that classroom teachers wanted to attend the workshops for lsen (learners with special education needs – a term previously used in policies and training) programmes which were offered for the learning support teachers. she felt that all teaching staff members at full-service schools should be trained on how to deal with reading problems. she asked for a lengthy workshop, maybe even for a week. it was clear that most of the participants in the study wanted to improve their knowledge about the teaching of reading with the aim of providing more and better support for their learners with reading problems. it is a given that society is changing and evolving. this necessitates in-service teacher training to ensure that teachers are kept abreast of changes regarding subject content and pedagogical knowledge to meet the changing demands of the 21st century (kyeremeh, adzifome & amoah 2022:67). the use of di as a key element of teaching and learning in an inclusive classroom could be new to many teachers who have been teaching for many years. it is thus advisable that the knowledge that teachers and lsts in fsss have about di be investigated and that the in-service training that they receive, should address the gaps in their knowledge about di. this could help them differentiate the curriculum in fss classrooms especially when they teach reading to young learners. john and segalo (2021:959) state that this lack of collegiality results in the climate of the school not being enabling or friendly. this could happen in fsss because lsts are better qualified than classroom teachers. if the principal and the management of fsss could address a lack of collegiality at their schools, the lsts could train the classroom teachers to address learners’ learning and reading problems using their knowledge and additional training backgrounds. this could address the need for in-service teacher training to a certain extent. additional in-service teacher training should be done by the various departments of education. discussion when teaching reading, the use of well-selected reading materials is important. this is even more important when teaching grade 3 learners who have different reading abilities and are reading at different reading levels. in the study, most of the respondents used different reading materials based on the learners’ reading levels. there were, however, not enough different interesting and age-appropriate reading materials available in all the classrooms. sun (2023) states that in extensive reading programmes, various reading materials, including easy materials on several topics, should be available. it is important that readers choose their own materials and read them for pleasure. teachers should also act as role models for readers. learners who have reading problems could benefit when well-planned and applicable resources are used during reading lessons and, if possible, at home. teachers could scaffold learners’ reading, either in words by explaining or by giving examples. the topic could also be explained with the help of visual materials. lynch (2020) suggests that charts, drawings, diagrams and reference guides could be used. if available, technology could also be used in the form of a video clip. in the study, it became clear that it was the lsts who acted as participants who indicated that they used additional texts and reading materials aligning with learners’ reading levels as part of curriculum differentiation to support their learners with reading problems. it is a pity that the readers in the mobile libraries were not used by the classroom teachers to support learners. just like the use of reading materials, the use of additional resources such as charts and pictures should be well-planned. using additional materials that are inappropriate, serves no objective. during the process of teaching of reading, differentiation of activities can have potential to supply support for learners with reading problems and other learning activities. this is reflected well in the data obtained from the participants, as some of them clearly planned different activities, sometimes using the same content. the differentiation must be planned and scaffolded by the teacher. various activities should be planned based on the different learners’ reading abilities. this would, however, necessitate the constant assessment of learners’ progress in reading. there could be pitfalls when learners are grouped into various reading groups and teachers should be aware of them. pitfalls include the problem that classmates could ridicule young learners if they are in a group where weak learners are placed. if learners are ‘down-graded’ as mentioned by the participants, the interest level of the texts could not be age-appropriate. professional literature clearly shows that flexible grouping should be used. teachers should thus use a variety of grouping patterns. although there is no right or wrong method to organise learners in reading groups, the grouping should be flexible and be changed regularly. learners’ interests and skills should be considered and regrouping should take place (weisskopf 2009:138). there was no evidence in the study that the participants were aware of possible pitfalls that could arise if learners were placed in different reading groups. neither the classroom teachers nor the learning support teachers gave any indication that they used a variety of grouping patterns or that their groupings were flexible. as far as the product of the teaching of reading is concerned, differentiation of activities could also involve the assessment of learners’ reading and their reading comprehension. after a story or text has been read by all the learners, the assessment of their comprehension can be done in different ways. learners could complete questions about key ideas and events in the story. learners with reading problems can draw a story on the web (lynch 2020). learners could also be scaffolded by letting them fill in words only. a graphic organiser of the text to be read could also be provided. a teacher should consider what type of reading an assessment task will require and how much time the assessment will require for a learner with a reading problem to read the task. weselby (2021) refers to the use of flexible grouping in their teaching of reading, based on the teachers’ assessment of learners’ knowledge of phonics, for instance, or on the learners’ interests in certain books. suppose the participants in this study, as well as other teachers and lsts in fsss, are trained to use grouping as part of differentiated reading instruction and reading assessment. in that case, they should, however, also be informed about the pitfalls that could arise. during the collection of data, the researchers did not have any clear plan for the assessment of learners’ reading at the sites that were visited. lynch (2020) draws attention to the important factor in the assessment of reading, which is that the assessment of the reading should also be planned. for additional reading instruction to be successful, the specific reading needs of learners must be attended to. this requires the planned and continuous assessment of the reading levels of individual learners. after the assessment, learners could be grouped, and the reading instruction of each group planned accordingly. during the study, the researchers noticed two aspects of the learning environment which contributed to the enhancement of di at the schools where the research was conducted. one aspect was the fact that lsts who could provide additional remedial instruction to smaller groups of learners or to individual learners were introduced at the schools. the use of lsts is one of the pillars of fsss, and at the three study sites, the lsts were providing support to many learners both individually and in small groups. the other aspect was peer teaching, when well used and planned, could have a positive psychological effect on certain learners’ reading progress. it was encouraging that some of the participants were using peer teaching in an attempt to support learners with reading problems in their classrooms. this aligns with international research by gubalani et al. (2023), who state that ‘supporting the notion that peer tutoring contributed to the improvement of reading comprehension’. fuchs and fuchs (2005) indicated that peer teaching has the potential to develop young learners’ literacy abilities, including learners with reading problems. these days, many experts, including unesco, argue that peer teaching is used successfully in many countries. peer teaching could help learners make academic progress, such as in their literacy abilities, but it could also enhance their self-esteem and attitude toward schoolwork and the school in general. the activities during peer teaching when reading should be well structured (blanch et al. 2012:1685). the authors are aware that a lack of collegiality sometimes exists in schools where certain teachers are better trained than others. john and segalo (2021:959) state that there are schools in south africa where a lack of collegiality results in the climate at the schools not being enabling or friendly. this could happen in fsss because lsts are better qualified than classroom teachers. if the principal and the management of fsss could address a lack of collegiality at their schools, the lsts could train the classroom teachers to address learners’ learning and reading problems using their knowledge and additional training backgrounds. this could address the need for in-service teacher training to a certain extent. additional in-service teacher training should be done by the various departments of education. during in-service teacher training, the importance of di to provide support to learners with different and individual learning needs should be stressed. recommendations and implications the research findings arising from this study showed that knowledge about inclusive education is not enough for successful teaching in fsss. this is important during grade 3 reading lessons, where learners receive their final formal instruction in reading, preparing them for grade 4 and onwards, where they must be able to read in order to learn. if grade 3 learners do not manage to read fluently and with comprehension, this could have dire implications for their success at school. as discussed earlier, the pirls results of 2023 revealed that the majority of grade 4 learners in south africa could not read with understanding. it is recommended that all primary school teachers who teach reading should receive in-service teacher training to identify learners’ reading problems and reading needs. these teachers should also be retrained where necessary to use different reading methods and strategies to suit the learning needs and learning abilities of their learners. all learners who require moderate levels of support because of a mild barrier to learning and development, including reading problems, should be assisted in fsss by specifically trained reading teachers. it is vital that learners’ specific reading problems should be attended to. it is clear that to have a policy about fsss is not enough and that practical application of the policy in the classroom should be considered by the various departments of education. ineffective implementation of policies often happens in south africa. asriadi et al. (2023) share that it is not the policy but the educational milieu that will lead to the successful implementation of di in a country. it is recommended that teachers in fsss receive continuous professional training, especially regarding the teaching of reading and how di could be used to support learners with reading problems. the teachers in fsss should be well acquainted with the use of different reading methods, and thus, they should be flexible to use various methods and strategies according to the reading abilities and needs of individual learners. special attention should be given to the choice of reading content based on learners’ age and interests, as well as the learning environment in the classroom. the environment in the classroom must stimulate reading curiosity and interest in reading by including interesting reading materials and additional resources such as pictures, charts and word walls. if possible, fsss should have libraries to enhance reading among learners further. the provision of additional reading materials and books in libraries should be included in the budgets of education and fss departments. thus, di could become a key element in the reading class in fsss. limitations the study was conducted in tshwane south district of gauteng. the results thus reflected the situation regarding the use of differentiation during reading instruction in three fsss in a specific area in gauteng. as such, the results only reflected the use of differentiation during reading lessons in the classrooms of a group of teachers in one province of south africa. not all the gr3cts and lsts in the three fsss were selected as participants; thus, the results reflected the teaching of reading of the 17 participants. the study was also carried out in the schools of black children, and other fsss not in this category were left out. the findings may not be representative of other fsss in other parts of south africa. conclusion from the data, the teachers in the fsss, who were the participants in the study, were informed about most of the principles of inclusive education. the application of the principles of differentiated instruction to support learners with barriers to reading were, however, not always achieved. although the barriers to learning and development that some of the learners in the three fsss in the study were low to moderate, not all of these learners could be helped and supported to overcome their barriers to learning and development, especially to reading. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.a.p. conceptualised the article, decided on the methodology, conducted the research and wrote the initial draft article. a.j.h. added additional information and references, re-arranged and edited the article and also wrote sections of the article. funding information the research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available on reasonable request from the corresponding author, a.j.h. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references alexander, a.p., 2019, ‘lincoln and guba’s quality criteria for trustworthiness’, idc international journal 6(4), 1–6. asriadi, a.m., hadi, s., istiyono, e. & retnawati, h., 2023, ‘does differentiated instruction affect learning outcome? 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‘best grouping practices for reading instruction’, unpublished master’s dissertation, university of northern iowa. weselby, c., 2021, differentiated instruction: examples & classroom strategies, resilient educator, viewed 26 june 2023, from https://resilienteducator.com. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) theresa lorenzo department of health and rehabilitation science, division of disability studies, faculty of health sciences, university of cape town, cape town, south africa department of inclusive practices africa research unit, faculty of health sciences, university of cape town, cape town, south africa health through physical activity, lifestyle and sport, faculty of health sciences, university of cape town, cape town, south africa maximus m. sefotho department of health and rehabilitation science, division of disability studies, faculty of health sciences, university of cape town, cape town, south africa department of educational psychology, faculty of humanities, university of johannesburg, johannesburg, south africa citation lorenzo, t. & sefotho, m.m., 2025, ‘an ubuntu approach to disability and inclusive development for women with disabilities’, african journal of disability 14(0), a1600. https://doi.org/10.4102/ajod.v14i0.1600 original research an ubuntu approach to disability and inclusive development for women with disabilities theresa lorenzo, maximus m. sefotho received: 22 oct. 2024; accepted: 15 may 2025; published: 22 july 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: vicious cycles of disability and poverty isolate disabled women, making it difficult for them to meet their own and their family’s human needs. their exclusion and deprivations may be bridged through inclusive development processes. the article presents an afro-centric approach to inclusive development that speaks to experiences of disabled women who lived in informal settlements in the cape town metropole, south africa that also has relevance for marginalised and oppressed communities in the global north. objectives: to describe how human scale development (hsd) as a conceptual framework resonates with ubuntu values and principles to enable individual and collective action spaces to overcome human poverties. method: reflexivity was done to explicate and further conceptualise an ubuntu approach to community-based inclusive development for disabled women. results: analysis revealed the centrality of ubuntu values in effecting social change through bi-directional shifts in self and collective identities, and a spirituality of disability. themes included disability as a burden (deprivation), and disability as a gain (a potentiality). five development opportunities emerged: enhanced self-identity; strengthened family life; sustained livelihood; community rehabilitation workers as brokers to facilitate access to health and social services; and information. conclusion: ubuntu as an african philosophy draws on indigenous knowledge systems that provide an afro-centric approach to inclusive development of disabled women. ubuntu promotes a reflexive, person-centred and collective approach to human development at the micro-level. contribution: harnessing the power of learning to listen deeply to each other’s stories facilitates the interdependence and spirituality of ubuntu to create supportive, inclusive development. keywords: human scale development; disability; spirituality; ubuntu; participatory action research; narratives; action reflection; inclusive development; social change; community-based rehabilitation. introduction disability inclusive development (did) means that all stages of development processes are inclusive of and accessible to persons with disabilities (cbm 2015). at a national level, did requires that all persons be afforded equal access to education, health care services, livelihoods development, family and social inclusion and other citizen rights (united nations [un] 2017). these ideals are difficult to attain at local community levels because persons with disability face numerous material and structural barriers in the context of poverty and underdevelopment. how disability is defined, understood and given meaning in a culture influences the extent to which essential services, support and development opportunities are made accessible to disabled persons. this article is a conceptual article on a new framework that emerged through the synthesis of the findings from empirical research that has already been published (lorenzo 2005). the vicious cycles of disability and poverty are hard to overcome with few material resources and multiple structural barriers, especially for women with disabilities who experience heightened levels of exclusion from development opportunities such as access to adequate housing, health services, education and livelihoods development (lorenzo & kathard 2018). women also face multiple forms of discrimination based on their various cultural identities, placing them at higher risk of gender-based violence, sexual abuse, neglect and exploitation and therefore in higher need of development opportunities (lorenzo & kathard 2018). in this article, we demonstrate the contribution of indigenous knowledge about cultural values and spiritual practices to the self and collective empowerment of disabled women. the first author carried out a participatory action research (par) doctoral study with disabled women who lived in informal human settlements in communities in cape town metropole, south africa, over a 4-year period from 1999 to 2003 (lorenzo 2005). data were generated through an initial storytelling workshop in five sites and subsequent monthly narrative action reflection (nar) workshops (lorenzo 2010) (see figure 1). figure 1: the four phases of the participatory action research process. the purpose of the nar workshops that were undertaken with the women was to interrupt the vicious cycles of risk and exclusion by creating action learning spaces where women with disabilities were empowered to move from being vulnerable groups to becoming resource groups that contribute to social transformation in communities (lorenzo 2010). using old data is justifiable when examining a past event, such as the disability framework proposed by lorenzo (2005). we have been forthcoming about the age of the data (ketchen, roccapriore & connelly 2023). we present an ubuntu approach to disability as a framework for community-based inclusive development as identified by lorenzo (2005). the proposal is an epistemically equitable one supporting afrocentric ubuntu frameworks for people with disabilities (sefotho 2022). this article promotes ‘an ubuntu approach to disability inclusion’ as it aligns with emerging scholarship that mainstreams ubunutu-botho paradigms from the global south (mpofu & sefotho 2024; sefotho & letseka 2024). anthropologist geertz (1973), writing about the interpretation of cultures, argues that culture does not drive human behaviour. rather, culture is a web of symbols that can be observed and thickly described to help us better understand what that behaviour means in a particular context. he points out that culture denotes: [a]n historically transmitted pattern of meanings embodied in symbols, a system of inherited conceptions expressed in symbolic forms by means of which men [sic] communicate, perpetuate, and develop their knowledge about and attitudes towards life.’ (p. 89) african philosophers view culture as an open-ended resource of social meanings on which members of a community draw to mediate the contingencies of their everyday life (coetzee 2002). culture denotes the resources of a community’s material and moral worlds, with ‘community’ defined as an ‘ongoing association of men and women who have a special commitment to one another and a developed (distinct) sense of their common life’ (coetzee 2002:274). culture has a normative role in a community. it consists of interpersonal standards for deciding how to go about daily activities based on the value placed on what it means to be a person, a human being, including what it means to be differently abled. culture and disability writing about culture and disability, ohajunwa and sefotho (2024) point out that it is difficult to find a definition of disability that would be applicable to all cultures because conceptions of disability are linked to conceptions of ‘person’ and ‘personhood’ in a particular culture. in small-scale societies (i.e. local communities), close social interactions between individual members are the norm, with each individual having extended, multistrand relationships with other members of the surrounding cultural society. they observe that there has been epistemic exclusion of cultural positive experiences of disability both from the individual and social contexts. beyond definitions, models of disability better explain the relationships between cultures and disability (retief & letšosa 2018). the global contemporary understanding of disability embraces epistemologies of disability from the global south, specifically focusing on indigenous disability studies (ed. ward 2024). contemporary debates focus on disability inclusion, the increasing awareness, interest in including disability and disability-oriented employment (mullin et al. 2024). diversity, equity and inclusion (dei), corporate social responsibility (csr) and the un sustainable development goals (sdgs) have become global guiding frameworks (mullin et al. 2024). but these may not necessarily mirror afrocentric ontoepistemologies of disability (sefotho 2021). the social identity of persons with disabilities is based on inclusion in the family, clan and community life. in contrast, interpersonal relationships in large-scale societies (i.e. populations within and across countries) are impersonal. people with disabilities become a marked group; they are given social identity (as opposed to having one as members of a cultural group) by the state; they are viewed as citizens who have the same rights as others and should, as such, be included in all dimensions of mainstream society. situating ubuntu in development an ubuntu approach to disability and inclusive development foregrounds the benefits of mobilising people’s innate potentialities with due consideration of their cultural and communitarian orientations. ramose (2002), writing about the philosophy of ubuntu and ubuntu as a philosophy, argues that ubuntu is the fundamental ontological and epistemological category in the african thought of the bantu-speaking people. the be-ing of an african in the universe is inseparably anchored upon ubuntu. ramose points out that ubuntu is two words in one: the prefix ‘ubu-’ evokes the idea of a way of be-ing that is always orientated towards enfoldment of ‘-ntu’, towards humanity as kinship. combined, the word ubuntu represents two aspects of be-ing as oneness and an indivisible wholeness (ramose 2002:230). it means ‘i am a person through other people. my humanity is tied to yours’. as a way of be-ing in the world, ubuntu manifests humanness, it seeks to establish humane (polite, respectful, dignifying, consensual, compassionate) relations with others. another way it manifests is as the ‘dance of be-ing’ (ramose 2002:234). in this sense, ubuntu is an invitation to participate actively in and through the music of being (ramose 2002:235). music, dance and storytelling are the means through which africans search for harmony in all spheres of life. archbishop tutu (1999), writing about commitment to a communitarian conception of the socially and culturally embedded personhood of all citizens in post-apartheid south africa, explained ubuntu this way: ‘[t]he essence of being human is part of the gift africa will give the world. it embraces hospitality, caring for others, being willing to go the extra mile for the sake of others. we believe a person is a person through another person, that my humanity is caught up, bound up and inextricable in yours. when i dehumanize you, i inexorably dehumanize myself. the solitary human is a contradiction in terms and, therefore you seek to work for the common good because your humanity comes into its own community, in belonging.’ (p. 34) we argue that the importance of person-centred community based inclusive development (cbid) practice in the context of poverty and structural underdevelopment lies in working for the common good through consensual, participatory forms of empowered action-learning that draws on shared cultural values of ubuntu. human scale development human scale development (hsd) is a conceptual framework for a people-centred development practice that targets individual, group and community barriers to inclusive development by mobilising people’s various innate potentialities (max-neef 1991). led by chilean economist manfred max-neef, an interdisciplinary team of latin american researchers, formulated the hsd approach to improve quality of life, especially for poor people by focusing on the opportunities they have to satisfy their fundamental human needs. the hsd approach places emphasis on empowerment-orientated development processes at a human scale or local community level, rather than large national or international developments (max-neef 1991). it considers the nine fundamental human needs as universal, that is, they are the same in all cultures and historical periods, and satisfiers of these human needs may differ. see definitions of these human needs in table 1. table 1: definitions of fundamental human needs. besides subsistence, these fundamental human needs are not seen as hierarchical, but rather each need is regarded as equally important to human development. the hsd approach addresses poverty by meeting deeper human needs rather than just material aspects, economic goods or services. it seeks to develop self-reliance by overcoming human poverty in all its forms. in short, hsd targets human poverties in the belief that real development at an individual group or community level will only happen if all nine fundamental human needs are met. for development to occur, each need is considered to have a twofold existential (lived experience) character that is held in constant tension. the resolution of this tension through a process of empowerment enables the gradual, progressive interruption and eventual elimination of the vicious cycle of poverty and underdevelopment. firstly, each need has a deprivation dimension. deprivation involves a psychophysiological response to an unmet need that is usually experienced as a feeling or sensation, an awareness that something appears to be missing. secondly, each need has a potentiality, which indicates the degree to which the human need engages, motivates and mobilises people. every potentiality can become an innate, existential resource through which development can unfold. the existential dimensions by which needs may be met (lorenzo & duncan 2020): being: through the way we feel or regard ourselves and the attributes and attitudes that are used to define one, whether individual or collective. having: what we have – indicates institutions, customs, norms, mechanisms, non-material tools and laws (not physical facilities or goods and services). doing: through what we do – defines actions, whether individual or collective. interacting: where and with whom we interact – indicates collective locations or environments as settings in time and space. human scale development mobilises the human capacity of people to solve their own problems. it addresses scarcity of resources by helping people identify the creative and synergistic social potential that exists but lies dormant within themselves and their various environments. limited resources can be stretched further when human needs are seen as life forces that mobilise people to act to meet their needs. a dynamic hsd matrix is created with human needs on the y-axis and existential dimensions on the x-axis (see table 2). the hsd matrix serves as a template for identifying need satisfiers (max-neef 1991), that is: the diverse range of means available to meet each fundamental human need. satisfiers are culturally determined and vary according to time, place and circumstances. they can be seen in societal processes or practical ways or means that people adopt or choose to use to structure their lives. singular satisfiers meet one need while synergistic satisfiers meet more than one need at a time. a satisfier is positive if it leads to beneficial and constructive outcomes. a satisfier is seen as negative in nature if its outcome is unhelpful or causes pathology, for example, violence. societal and individual pathologies occur when needs are not met or when they are met in a negative way for a long period. (n.p.) table 2: an human scale development matrix of human needs and existential dimensions, with examples of satisfiers. research methods and design participant selection the women who were involved in the par study lived in wooden shacks. a snowballing technique was used for selection. by the end of the study, 180 women had participated or were exposed to the project as part of cbid programmes. any woman who met the following criteria was invited to attend the workshops: age: between 18 years and 50 years. impairment status: there were no exclusions related to any impairment category as a process of snowballing occurred. participants had been referred by a primary health care organisation, south african christian leadership assembly (sacla) primary health care project, a non-governmental organisation (ngo) providing health and rehabilitation services in khayelithsa and browns farm and ktc or disabled people south africa, by different routes, including self-referral. in this way, their status as ‘disabled’ was based on self-disclosure, that is, they identified with an experience of disability. economic status: no one was excluded based on income, access to social security or employment. the women were low income, dependent on disability grants (dgs) and unemployed or self-employed doing informal trading. resident: in the informal settlements served by two non-government organisations, one provided primary health care services, including the training of community health workers and mothers of children with disabilities as community rehabilitation workers; the other ngo was a national disabled person organisation. data generation reflexivity as a research method is an intentional intellectual activity in which individuals explore or examine a situation, an issue, or object on the basis of their past experiences, to develop new understandings that will ultimately influence their actions or in which they critically analyse the field of action (trembley et al. 2014:539). in re-examining references to ubuntu in the synthesis chapter of lorenzo’s (2005) phd, we further theorised the relevance of an ubuntu approach to disability inclusion that occurred through action spaces at local and community level. while cbid is applicable to both small-scale and large-scale societies, a ‘thick description’ is a criterion of ensuring rigour in qualitative research by describing the contextual factors of the study in depth, namely culture and disability is possible in small-scale contexts such as the community of women with disabilities in our study. ethical considerations ethics approval was obtained from the research ethics committee of the faculty of medicine, university of cape town on 14 may 1999 (rec ref: #100/99). pseudonyms were used when quoting data from participants to protect their identity. results findings are presented in two parts. firstly, the contribution of ubuntu as an african philosophy in helping women resolve the tensions between the deprivations and potentialities of meeting their fundamental human needs. secondly, the use of hsd as a conceptual framework for fostering community-based inclusive development. part 1: proposing an ubuntu approach to disability inclusion as a framework encompassing interdependency and spirituality the findings suggested that the social model of disability has limitations in resource-constrained communities, where support to advance policy implementation is needed. the interdependency and spirituality reflected the women’s creative potential that emerged vibrantly during the nar workshops. these propositions were evident in the women’s engagement with songs, dance and storytelling using indigenous symbols and metaphors to explain the existential dimensions of their human needs, that is, their shared cultural values and indigenous ways of being, having, doing and interacting. for example, women made clay sculptures of two cows grazing to illustrate the concept of ‘sharing with the other’. their spirituality infused all the workshops through singing and rituals of prayers. figure 2 depicts how ubuntu, symbolised by a burning candle, provided spiritual impetus (light) to the relationships that formed during the facilitated action-learning processes of nar workshops. figure 2: an ubuntu approach to disability. the body of the candle represents disability and the wick the potential of women to overcome the burden, if a catalyst, such as access to information, transport, support and dispelling myths, acts as a match to light the candle. as the light shines, it diminishes the darkness and extends the boundaries. simultaneously, as the candle burns, the wax diminishes, in the same way that the burden of disability diminishes as the women overcome isolation, challenge and change stereotypes and create a network of action spaces through social reflexivity and collective action (lorenzo 2005). the capacity of women, children, families and neighbours to understand disability issues is nurtured. as power increases, so do the women extend their boundaries for human development and vice versa. human relationships and interactions are paramount during the action learning process– the essence of being a person through other people is illustrated in the different critical dimensions that comprise the collective identity (lorenzo 2005): ‘i see myself as a light for other disabled people and i’m not afraid. i know i’m able to talk. i’m usually shy, but since i’ve been here i am free. i used to worry a lot at home, but since i’ve been here i’m much better. when i see my neighbours quarrelling, i say to them ‘call your family and sort this out’. later they say to me ‘really we called them and we solved it’. so that is why i’m saying i’m a lamp. i see that even with the women, there is change. i’m able to see how they were before and how they are now. ever since they have been meeting in the groups, the load was taken away and everything has been lighter.’ (bulelwa, black person, physically disabled woman) figure 2 depicts the spaces and connecting lines between self-identity and collective identity that are dynamic, indicating the power of nar workshops for promoting social reflexivity. self-identity forms the inner circle because in african life, a person is the most important element of a society and forms the cornerstone of society as an inherent spiritual being. as such, a person is dependent on the goodwill and acceptance of others, which creates an inclusive society (lorenzo 2005). collective identity comprises six circles connected by two-way arrows to represent the interplay between the dimensions of human development, which include social, economic, political, as well as spiritual, emotional and moral development. the circles are all connected to the inner circle to indicate that no person can survive as an individual, whether disabled or not. disability is a burden or penalty when it is experienced as a loss of power or imposed boundaries within society. disability as a gain or possibility occurs when the myths of disability are dispelled and the boundaries of potential are extended (lorenzo 2005). talking about human poverty experienced at an individual level helped the collective to create a network of action spaces for their inclusion in opportunities for human development: ‘after the first workshop where i told my story, i felt much stronger. i realized these workshops could really help other women in the same situation as me. our rehabilitation did not help us return and settle back with our families or communities. here i made a clay sculpture of a plate and two women to share how i changed from gaining knowledge of disability rights and advocacy skills. the workshops helped us to find knowledge and information for each other. we felt happier. we recognized the gains we’ve made in changing our living conditions. these skills have led to a better life together. i made myself using clay. i want to show you that before i became disabled, my body was thin. i was small before and you can now see how big i am. so i want to share the good news so that others can be big like me. i must be the light, even in the community and preach about disability and how they can treat disabled people. i talk about disability. i became more confident and gained skills in being able to change things. i was used to speaking in church and sharing my testimony. now i speak about disability. i also loved to sing and dance.’ (bulelwa, black person, physically disabled woman) figure 2 also indicates that the vicious cycle of poverty and disability can be interrupted through the mobilisation of a collective, culturally embedded, people-driven development process at a local community level. the adverse cycles of deprivation in individual lives can be shifted by benevolent cycles of humanity and generosity (ubuntu) in which the collective is stronger than the individual, and the individual strengthens the collective. from a sense of self-reliance and inner strength, the women were able to rise above their worries and anxieties and dream of a better life together. there was an intention to succeed in their endeavours. the women realised how they could use their time and energy more wisely and purposefully. they challenged each other to change their behaviours of self-pity and undermining their abilities, so as to increase their productivity. the changes echoed the characteristics of spiritual warriors (roger 1998), which resembled the ubuntu spirit of resilience (tutu 2004). the sense of interdependency drew together the pain, hope and potential of women in the study, as women gained confidence to participate in activities to foster human development as they found support from each other. the spirit of compassion in advocacy reflected the women’s empathy for each other, as well as their neighbours: ‘so i was not the only one who wanted to shine a light to change attitudes to disability ourselves, amongst our families and our neighbours. the workshops also helped us see how we could heal each other. the workshops gave us courage to be visible in our families and community again. i told a story from the bible: i identify myself with the person who was next to the dam and people were coming and going not helping him. so jesus asked him, “do you want to be well?” “i want to, but i don’t have a person who will help me and put me in this dam.” jesus said “take your mat and go and by those words you are healed.” so now i’m well, but it’s sad when you see others having problems.’ (bulelwa, black person, physically disabled woman) the textual data of the nar workshops were inductively coded and plotted against the nine fundamental human needs of hsd, presented in part 2. part 2: human scale development as a conceptual frame for people-driven, community-based inclusive development two themes emerged from using the hsd as a conceptual framework for meta-analysis of data: disability as a burden or penalty (a deprivation) and disability as gain or possibility (a potentiality). see figure 1 that reflects the cyclical nature of the nar workshops. figure 3 illustrates the tension between the deprivation of unmet human needs and the potentiality of being able to meet one’s human needs through individual and collective actions motivated by the prevailing values of ubuntu. as the collective action learning cycles progressed each woman, given her unique personal circumstances, gradually and at her own pace, began resolving the tensions in her unmet human needs, through individual or collective actions, culminating in progressive person-centred development. the data illustrated how a par process contributed to human-scale, people-driven, local community development, evidenced in enhanced self-identity, strengthened family life, sustained livelihoods, increased access to health and social services and access to information. figure 3: the push-pull tension between deprivations and potentialities of the human needs of women that emerged in the two themes: disability as a burden and disability as a gain. enhanced self-identity during phase 1, the women reported deprivations associated with impairment and ill health that resulted in a sense of powerlessness and hopelessness at an individual level. their low confidence and self-esteem revealed human poverties of identity and understanding heard in the frequent statements of ‘i don’t know’. as the project progressed, gradual shifts in self-identity occurred that became a positive synergistic satisfier in situations where women were able to generate change through their sense of agency, well-being and wholeness: ‘i experienced deep changes about how i feel. i used to cry a lot, but since i met other women, i got new ideas. when bulelwa introduced me to the group, i was happy and i became one of them. i understand more about this impairment now. when i became disabled, i always undermined myself when i was with my friends. i always sat in one place. but when i met with the other women i became stronger and that thing of always feeling sorry for myself is gone. my in-laws did not love me but today my house is always full. i’m strong. today i’m not crying. now no one can believe that i used crutches before. no one can say i’m disabled now. i identify myself with the sun because before it was dark and i didn’t want to accept my disability. i couldn’t even sit in the sun. now i can do things with my hands and i got a certificate. after that i could do things for myself. now i’m like a mother in the house even when the children are not there. i never used to be like that. i used to wait for them to come back from school. now i feel that i can do anything.’ (nomthandazo, black person, physically disabled woman) strengthened family life the women faced numerous deprivations in the context of family relationships, pressed by the scarcity of resources, both emotionally and financially. some women were living with extended family members and were subject to abuse and exploitation. others had family members who remained in the rural areas of the eastern cape, leading to a loss of family support and subsequent human poverty of affection and protection. most women took on responsibilities of mothering as providers and nurturers, in some cases beyond the extended family to include others in the neighbourhood. unemployment of family members put a strain on the women providing for the survival needs in the family using their disability grant (dg). telling stories about their family-related deprivations gradually unlocked relational potentialities as family and public perceptions of the women being passive and dependent began to shift. bulelwa reflected on the changes she herself and glady’s experienced: ‘another woman told how her children had found support from the workshops as well as they also felt the pressure to change the stigma of disability. gladys said: ‘i’m receiving a lot of support from my family. my two children always show interest in what i’m doing. at school they used to be laughed at by other children because of my disability. but they told them that with their mother, they can’t see any disability, but they see a mother who is a role model and who can afford everything unlike [non-disabled] mothers who can’t afford the basics. you see [non-disabled] mothers who can’t even afford buying their children shoes. as mothers we learnt to teach our children respect and good social skills’. gladys also challenged us: ‘your child has a right to ask for things from you, but you need to teach them to talk nicely when they are asking for something. they mustn’t go and ask for something from other people because they think you can’t do things since you are disabled.’ (bulelwa, black person, physically disabled woman) sustained livelihoods the women’s stories indicated that government efforts to provide education (primary, secondary or tertiary) to children and women, young and old, had not yet materialised at a grassroots level. they reported low levels of schooling and high rates of illiteracy due to missed opportunities for formal education because of their socio-economic circumstances in the historical context of racially segregated schooling. some women generated income from vegetable gardening and selling in the informal sector that hardly enabled a subsistence existence because the small profit that was generated had to be used for school fees and buying children’s clothes. gradual shifts in ideas for and actions towards livelihood generation emerged. skills development for self-employment and finding a place to work were identified as synergistic satisfiers of human needs to equalise opportunities for subsistence. the human need for identity was met in resuming the provider role and the human needs of understanding and creation were met through learning new income-generating skills: ‘as a facilitator, the other women saw someone who is disabled and who at the same time was capable of sharing with them and of knowing what we should do together. we have gained a lot from each other. i gained strength from them; i gained just from sitting down with them, even if we were just talking. we found a woman who was in a different position when she first came in, in a different state. but today we are talking to someone else who is so grown. often the woman herself doesn’t even realise it, but we saw how she came in, and the difference today. women are also taking their businesses very seriously. those who are starting small businesses have gained. they came in not knowing what they were going to do with their hands. many had been sitting at home not knowing what to do. but today they are proud of what they are doing, having skills of many kinds. some of the women are now working in the shops.’ (majorie, black person, physically disabled woman) community rehabilitation workers as brokers to access health and social services and information interconnections between the barriers to health and social services were evident in the findings. most women interacted with health and social services as a consequence of their impairment. in public health services, because of insufficient understanding of disability issues and poor dissemination of information by practitioners, the women experienced difficulty in accessing dgs. ironically, inadequate financial resources meant a sense of deep frustration was experienced when trying to access health and social services. the stories indicated that social security in the form of dgs and neighbourhood structures were identified as synergistic satisfiers of the human needs. the paradox of dgs is that they have the potential to enable women to assume a provider role and foster reciprocal support on the one hand (positive, synergistic satisfier). on the other hand, receiving a dg opened women to financial exploitation by family members (a negative satisfier). participation of community rehabilitation workers (crws) in the par process paved the way for the women to appreciate the role of these mid-level health workers in facilitating increased access to intersectoral services and community-based rehabilitation. the support of crws provided the best chance of fostering skills and enhancing the abilities of the women to engage in occupations again. based on effective referrals to support networks, some of the women were able to resume familiar roles and activities through community-based rehabilitation interventions. as a buffer between the women and service providers, the crws offered hope and direction to the women by meeting their initial need for support and information and by facilitating access to activities and resources. the crws, as mothers of children with disabilities, had walked a similar emotional path as the women. they were able to empathise and encourage women to take action to manage their resources to change their circumstances. it became evident from the stories that poor dissemination and uptake of disability and development-related information could partially be attributed to high rates of educational illiteracy among the women, inadequate knowledge about disability among public sector service providers, inappropriate messaging by the media and uninformed cultural perceptions about disability in the public. the workshops created multilayered opportunities for gaining new, factual and accurate information and learning practical strategies for gaining knowledge and acting on them. as the women gained understanding, they experienced greater freedom to engage with information for more effective participation in development opportunities. discussion the findings support an ubuntu approach to community-based inclusive development for women with disabilities that emerged using hsd (max-neef 1991) as a conceptual framework for the doctoral study. two critical dimensions of this approach will be discussed: firstly, the creative dynamic between self-identity and collective identity as an impetus for social change and secondly, a spirituality of disability. the connection between self-identity and collective identities: interdependency as an impetus for social change figure 2 and figure 3 allude to the complexity and interplay between self-identity and collective identity in the context of community-based inclusive developments. it is proposed that if the collective identity is ignored in human development initiatives, then the development of self-identity is hindered and vice versa. both disability and identity are inherently complex concepts (johnstone, limaye & kayama 2017). disability self-identity can be perceived from an individual as well as societal levels (lejzerowicz 2017), thereby presenting the idea of a dialogical self (hermans 2012) as the nexus for an ubuntu approach to disability and development. the findings indicate that disability identities need to be deconstructed as they are generally associated with deprivations such as stigma, isolation and self-limiting beliefs. a collective nar journey helped the women with disabilities feel a sense of belonging. they felt at home again in their families and communities, that it was fine for them to be different and to openly talk about their disability without fear of stigma. gill (1997:39) identified ‘four types of integration underlying disability identity development, delineated with examples: (1) “coming to feel we belong” (integrating into society), (2) “coming home” (integrating with the disability community), (3) “coming together” (internally integrating our sameness and differentness) and (4) “coming out” (integrating how we feel with how we present ourselves)’. these four types of integration were made possible by tapping into prevailing ubuntu values. from the meaning of ubuntu: umuntu ngumuntu ngabantu (isizulu), similar to botho: motho ke motho ka batho (sotho), ‘i am because we are’, is central to the concept of being human. the ‘self’ is equated to being human and extended or enriched through other humans as a fundamental interconnectedness of all human beings. the ubuntu-botho notions of self-identity are embedded in collective conceptualisations of a person in which a person is a person because of others and defined as equally human to everyone (ntshangase 1994). self-identity transcends the individual space into collective spaces where an individual possesses multiple identities. as the findings revealed, a woman with disabilities could be a wife, mother, daughter-in-law, aunt, sister, community member with certain roles and a plethora of other roles that make one’s self-identity (lorenzo 2005). when the interdependency of ubuntu and the spirituality of disability were harnessed in the design of social change processes, the creation of supportive, inclusive communities was facilitated. the power of creative triggers and learning to listen deeply to each other’s stories evoked images of deprivations while illuminating the potentialities for the courage to act. reason (1994), writing about the developmental benefits of action learning, comments: ‘a person is a fundamental spiritual entity, a distinct presence in the world, who has the potential to be the cause of his or her own actions. to actualise this capacity and become fully a person is an achievement of education and self-development … [the process] involves learning to integrate individualizing characteristics with a deeper communion with the others and the world.’ (p. 41) utilising creative methods that generate data about both individual and collective experiences of sustained social change enabled women with disabilities to drive their own development as opportunities for acting, reflecting, learning and planning generate productive action spaces. understanding and applying hsd is a competence that could be embedded in the research curricula of undergraduate programmes at higher education institutions. the influence of spirituality of disability the candle in figure 2 foregrounds a spirituality of disability as ‘a driving force behind the women’s resilience and imminent collective identity’ (lorenzo 2005:160). insights into the spirituality of disability arising from this study have been reported elsewhere and will not be detailed here (lorenzo & duncan 2020). suffice it to point out that figure 2 positions power and spirituality as two interconnected dimensions for developmental shifts in self-identity and collective identity. hull (2003), writing on definitions of spirituality and the defiant power of the human spirit, asserts: human spirituality is that which transfigures and transcends the biology of the human. when we speak of transcending the biological, we refer to those potentials of the human being which enable him or her to make the biological organism instrumental to non-biological purposes. these potentials include abstract thought, imagination, empathy, the ability to represent biological experiences symbolically, and the capacity to integrate experience and knowledge around a significance or a meaning which goes beyond the pleasure and pain of the individual. (p. 22) the last sentence of this definition bears relevance to the spirit of our article. the findings linked to the existential dimensions of hsd (being, having, doing, interacting) support the centrality of spirituality in helping women with disabilities cope in the context of multiple deprivations. lorenzo (2005:165–167) adopted makgoba’s (1999) criteria of an african renaissance as the potentialities relate to ‘means of asserting and promoting humanity, readiness [of women with disability] to question themselves [with] a permanent openness of mind [for] assimilation and adaptation’. enabling a spirituality of disability during development processes allows abstract thought, imagination and empathy to turn the pleasure and pain of the individual into hopeful action (lorenzo & duncan 2020). limitations to claim that an ubuntu ethos existed throughout the nar processes is not necessarily to claim that the compassion it encapsulates was prevalent in the micro-dynamics of interpersonal relationships during each workshop. a limitation may be that there was no follow-up with women who discontinued participating in the workshops. reasons could be mixed, as some women may have been satisfied, or they may have felt it was a waste of time as we were not meeting their needs or expectations. to the best of our knowledge, nar workshops as a data generation method have not been utilised by other researchers, so its veracity has not been tested. conclusion this article highlights how nar workshops as a data gathering method in lorenzo’s doctoral study utilised creative art as triggers for dialogue and action spaces that made it possible for fundamental human needs to be met. the ubuntu values that emerged during the synthesis of findings promote a reflexive, person-centred and collective approach to human development at the micro-level. group interactions during nar workshops made social reflexivity possible, fanning the flame of ubuntu that was already embedded among participants. we have examined and theorised references to ubuntu values in the doctoral research, highlighting the indigenous cultural processes that were elicited by the nar workshops. the process of the women’s personal agency to act both individually and collectively was ignited through shared stories that generated a culture of belonging by raising awareness and consciousness about both the barriers to and opportunities for inclusive development. developing action spaces to equalise opportunities was a synergistic satisfier of their fundamental human needs that disrupted the vicious cycles of poverty and disability. interdependency and a spirituality of disability created a compassionate and sustained cycle of humanity and generosity, both significant values of ubuntu, as action spaces facilitated people-driven inclusive development at a local level. the collective is stronger than the individual; the individual strengthens the collective. acknowledgements we are grateful for the insightful comments from the reviewers and especially the in-depth feedback of reviewer b in the last version, as the conceptual complexity was recognised, and suggestions helped create a more coherent argument. theresa lorenzo is still appreciative of the time and energy the women, the research co-facilitators and the community rehabilitation workers committed to the study. thanks also to emeritus professor madie duncan for her assistance in revising the article. we acknowledge the women who participated in the study and the two research co-facilitators, the late majorie january, a disabled woman, local councillor, and chairperson of disabled women’s development programme of disability people south africa, and peliwe mdoloko, an occupational therapist. this work stems from the author, theresa lorenzo’s, phd thesis entitled ‘we don’t see ourselves as different: a web of possibilities for disabled women : how black disabled women in poor communities equalise opportunities for human development and social change’ published in 2005 in the department of public health, faculty of health sciences, university of cape town (uct). see online: https://open.uct.ac.za/items/ac30a385-45d8-4398-a798-c2cdf1906a30. competing interests the authors reported that they received funding with no conditions placed by them on the research. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions the article draws on lorenzo’s (2005) phd, which m.m.s. helped with the first draft of this conceptual article; t.l. edited and finalised the article after m.m.s. had reviewed edits. funding information funding was received from the national research foundation’s women-in-research and thuthuka awards and from the medical research council and university research committee at uct. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references cbm, 2015, disability-inclusive development toolkit, viewed 14 december 2023, from https://disability-hub.com/wp-content/uploads/2020/06/disability-inclusive-development-toolkit.pdf. coetzee, p.h., 2002, ‘morality in african thought’, in p.h. coetzee & a.p.j. roux (eds.), philosophy from africa, 2nd edn., pp. 321–401, oxford southern africa, cape town. geertz, c., 1973, the interpretation of cultures, basic books, new york, ny. gill, c.j., 1997, ‘four types of integration in disability identity development’, journal of vocational rehabilitation 9(1), 39–46. https://doi.org/10.1016/s1052-2263(97)00020-2 hermans, h.j.m., 2012, ‘dialogical self theory and the increasing multiplicity of i-positions in a globalizing society: an introduction’, in h.j.m. hermans (ed.), applications of dialogical self theory. new directions for child and adolescent development, vol. 137, pp. 1–21, jossey-bass, san franscisco. hull, j.m., 2003, ‘a spirituality of disability: the christian heritage as both problem and potential’, studies in christian ethics 16(2), 21–35. https://doi.org/10.1177/095394680301600202 johnstone, c.j., limaye, s. & kayama, m., 2017, ‘disability, culture, and identity in india and usa’, in s. halder & l. assaf (eds.), inclusion, disability and culture, inclusive learning and educational equity, vol. 3, pp. 273–324, springer, cham. ketchen, d.j., roccapriore, a.y. & connelly, b.l., 2023, ‘using old data: when is it appropriate?’, journal of management 49(8), 2541–2548. https://doi.org/10.1177/01492063231177785 lejzerowicz, m., 2017, ‘identity and its reconstruction and disabled people’, international journal on disability and human development 16(1), 19–24. https://doi.org/10.1515/ijdhd-2016-0036 lorenzo, t., 2005, ‘we don’t see ourselves as different: a web of possibilities for disabled women: how black disabled women in poor communities equalise opportunities for human development and social change’, phd thesis, university of cape town, faculty of health sciences, department of public health and family medicine, viewed april 2025, from http://hdl.handle.net/11427/9982. lorenzo, t., 2010, ‘listening spaces: connecting diverse voices for social action and change’, in m. savin-baden & c.h. major (eds.), new approaches for qualitative research: wisdom and uncertainty, pp. 131–144, routledge, london. lorenzo, t. & duncan, m., 2020, ‘deep down in our hearts: a spirituality of disability that enables social belonging for economic and political inclusion of women with disabilities’, journal of disability & religion 25(2), 110–131. https://doi.org/10.1080/23312521.2020.1816245 lorenzo, t. & kathard, h., 2018, ‘disabled women and violence in south africa’, in s. shah & c. bradbury-jones (eds.), global perspectives on disability, violence and protection over the life-course: an edited collection, chapter 6, routledge, uk. mahlangu, j.m. & lorenzo, t., in press, ‘adopting three mindsets to community-based inclusive youth development’, in s. grech & j.g. weber (eds.), community-based inclusive development, chapter 5, springer nature. makgoba, m.w. 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(ed.), 2024, indigenous disability studies, 1st edn., routledge, london. https://doi.org/10.4324/9781032656519 abstract introduction research method and design ethical considerations results unfavourable physical and psychological learning environment discussion limitations of the study conclusions acknowledgements references about the author(s) ephraim l. nuwagaba department of adult and community education, kyambogo university, uganda peter n. rule school of education, university of kwazulu-natal, south africa citation nuwagaba, e.l. & rule, p. n., 2016, ‘an adult learning perspective on disability and microfinance: the case of katureebe’, african journal of disability 5(1), a215. http://dx.doi.org/10.4102/ajod.v5i1.215 original research an adult learning perspective on disability and microfinance: the case of katureebe ephraim l. nuwagaba, peter n. rule received: 14 aug. 2015; accepted: 11 dec. 2015; published: 24 aug. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite uganda’s progress in promoting affirmative action for persons with disabilities and its strategy of using microfinance to fight poverty, access to microfinance services by persons with disabilities is still problematic due to barriers, characterised by discrepancies between policies and practices. regarding education, the affirmative action in favour of learners with disabilities has not translated into actual learning opportunities due to personal and environmental barriers. objectives: the study on which this article is based investigated the non-formal and informal adult learning practices regarding microfinance that persons with disabilities engaged in. this article seeks to illuminate the barriers that a person with a visual impairment encountered while learning about and engaging with microfinance and the strategies that he developed to overcome them. methods: this was a case study, framed within the social model of disability and critical research paradigm. data were collected through in-depth interviews of a person with visual impairment and observations of the environment in which adult learning and engagement with savings and credit cooperative organisations (saccos) occurred. results: findings indicate that the person with a visual disability faced barriers to learning about microfinance services. he experienced barriers in an integrated manner and developed strategies to overcome these barriers. the barriers and strategies are theorised using the social model of disability. conclusion: the case of a person with visual impairment suggests that persons with disabilities face multiple barriers regarding microfinance, including social, psychological and educational. however, his own agency and attitudes were also of importance as they influenced his learning. viewing these barriers as blockades can lead to non-participation in learning and engagement with microfinance whereas viewing them as surmountable hurdles can potentially motivate participants to succeed in learning about and engaging with microfinance. introduction access to microfinance is a vital but problematic issue for persons with disabilities who wish to pursue their own businesses. in uganda, microfinance is a strategy that is increasingly being used in the fight against poverty. unfortunately, persons with disabilities are faced with challenges while learning about and engaging with microfinance (nuwagaba 2012). this is despite the existence of the community-based rehabilitation (cbr) guidelines of 2010 and the united nations convention on the rights of people with disabilities (uncrpd) (un 2006) that advocate inclusiveness. similarly, the good policies that exist in uganda are not matched by good practices (abimanya-ochom & mannan 2014). katureebe’s exemplary case has been selected because it provides rich experiences of his learning and insights into many of the barriers that people with visual impairments face while learning about microfinance and the strategies to address them. understanding the case of a person with disability’s learning experiences and the challenges he faces while learning about microfinance can provide insight into the complexity of the interplay between disability and adult learning and provide a basis for improving education provision for people with visual disabilities. the case also provides a glimpse of the complex relationships between adult education, disability and microfinance. the purpose of this article is to illuminate the barriers that a person with a visual impairment encountered while learning about microfinance and the strategies that he developed to overcome them. it provides an understanding of the interplay between unfavourable physical and psychological factors, learning environment and inadequate finances. we start with the research context and then frame the study within relevant literature and theory. this is followed by an explanation of the methodology employed, a profile of katureebe and the presentation of results focusing on adult learning practices, the barriers encountered and strategies adopted. we discuss the findings in relation to the social model of disability. we conclude with some reflections on the implications regarding adults with disabilities, learning and microfinance. background research context the world report on disability (who 2011) estimates that 15.3% of the world population is disabled and is likely to have lower educational and employment opportunities. who (2010b) confirms that in uganda, as in many developing countries, persons with disabilities have low literacy levels. while the net enrolment in primary education stands at 81.1% (ubos 2013), only 15% of children with disabilities are able to access education, 5% through inclusive schools and 10% through special schools (unicef 2012, cited in nyende 2012). this limits persons with disabilities’ acquisition of what who (2010b:1) calls ‘foundation skills’, including those required to successfully run a business. lwanga-ntale (2003) confirms that in uganda many persons with disabilities are of low formal education levels and hardly have any formal employment opportunities. for those who wish to start or improve their own businesses, accessing microfinance loans requires literacy skills such as filling in loan application forms, calculating interest on loans and keeping records. persons with disabilities’ access to education may therefore enhance their access to microfinance services; conversely, lack of education may limit access. it is likely that the income situation of persons with disabilities would change if they had access to microfinance loans (mofped 2008) and appropriate adult learning opportunities (nuwagaba et al. 2012; association of microfinance institutions [amfiu] 2010). the need to provide educational opportunities for such a large and deprived group cannot be ignored. unfortunately, in uganda, as in many african countries, persons with disabilities hardly benefit from adult education provision (nuwagaba 2012). despite the challenges, some persons with disabilities, including those who are semi-literate, do access microfinance services (nuwagaba et al. 2012). however, the way they acquire the knowledge and skills to improve their livelihood is largely unknown and undocumented. the microfinance services in this study were those provided by savings and credit cooperative organisations (saccos). according to the executive director, microfinance centre, ‘saccos are member-owned, member-managed and member-used; community based and much closer to the poor than mainstream mfis [our addition: micro finance institutions]’ (nuwagaba 2013:10). unfortunately, the field of adult education and disability in african contexts is under-researched (belanger & blais 1995; omolewa 1995) and especially how disability ‘affects, impacts and/or constrains the adult learning context’ (clark 2006:310). this is reflected in sub-saharan countries’ recommendation 28 for the international conference in adult education (confintea) vi that ‘all adult learning and education programmes should take into consideration the special needs of disabled learners’ (aitchison & alidou 2009:67). objectives this article builds on nuwagaba’s (2013) study by engaging in more in-depth analysis to bring out the complexities of the barriers experienced by a person with visual disabilities during learning processes and the strategies employed to overcome them. literature review understanding the unique characteristics of adult learners with disabilities while adult learners with disabilities engage holistically in adult learning processes, like learners without disabilities (rogers 2003), they are a minority group whose voices are often silenced (clark 2006). their self-identity and how they are viewed by society play a much bigger negative role in their learning than for those without disabilities, because society often regards them as inadequate. some of them have internalised their oppression and, as freire (1972) argues, those who get to this stage believe their situation cannot be changed. on the other hand, there is evidence that some adult learners with disabilities have a strong motivation to learn. rule & modipa (2012) investigated the attitudes of adult learners with disabilities regarding education in a non-governmental organisation setting in south africa. they found that they had negative childhood experiences of education and suffered stigmatisation. as adults, however, they had a strong desire to learn and attempted to affirm their position in society as people with potential just like anyone else. in addition to the social barriers that exclude them from microfinance services, adult learners with disabilities may also be hindered by lack of self-esteem and self-confidence, themselves internalised consequences of social barriers (who 2010a). their families’ or own expectations of an entitlement to charity may reinforce this exclusion. additionally, adult learners, especially those who have faced discrimination and inequality, have strong emotions which can either support or hinder learning (zembylas 2008). in his study on distance learners, zembylas describes attitudes that arise out of inequality and discrimination as ‘us versus them’. adult learners with disabilities may fit this description as they face discrimination and marginalisation. for such learners, who may feel persecuted and defensive, learning with learners without disabilities can be problematic unless society takes explicit measures to accommodate them (zembylas 2008). adult education literature recognises the uniqueness of adult learners with disabilities (covington 2004; dubois 1998; gadbow 2002; horton & hall 1998; polson & white 2000). clark (2006) identifies such learners as individuals with unique or special needs that can be addressed through provision of sign language interpretation, note-taking services, assistive technology and separate and/or extra time for exams – services that can be provided by society. although clark’s conceptualisation relates to formal learning, it is, apart from examinations, relevant to non-formal adult learning. relevant content and the use of facilitators, who are able to recognise the characteristics of adult learners with disabilities and employ appropriate methodologies, can also help to address their learning needs. framing the study in theory: the social model of disability the social model of disability was developed as a reaction and alternative to the medical model, which defined disability in medical terms and located it as a problem of the ‘patient’. according to the social model, economic, cultural, attitudinal, physical and social barriers stop people with impairments from participating fully in society, and so create disabilities (germon 2000; ndeezi 2004; oliver 1996; truman 2000). society is viewed as the problem, not the person with impairment. the social model fits in well with the agenda of the disability movement in uganda which advocates for the removal of barriers to the participation of persons with disabilities in all spheres of life (ndeezi 2004; nuwagaba 2012). uganda’s national policy on disability understands disability as ‘permanent and substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environmental barriers resulting in limited participation’ (moglsd 2006:28). this definition focuses on the disabling environment although the impairment is not ignored. however, the social model is criticised for downplaying the role of impairment and personal experiences (mercer 2002; scully 2008 cited in rule & modipa 2012). the social model of disability resonates well with the critical research paradigm, which was adopted in this study, and which can be used to understand and contribute to reshaping oppressive structures and processes in society such as those experienced by persons with disabilities (henning, van rensburg & smit 2004). the social model is relevant to this study because it facilitated the understanding of katureebe’s experiences and the influence of environmental factors. this understanding can be used to work towards making such environmental factors more favourable to persons with disabilities and improving their quality of life. the framework helps to contextualise the learning and engagement with saccos in this study by locating them as a relation between the individual person with impairment and what schneider (2006) calls environmental factors, such as the influences of the conditions of the saccos, families and the communities in which they live, work and learn. research method and design the study adopted a qualitative case study approach (rule & john 2011; simons 2009; yin 2003) within the critical research paradigm (henning et al. 2004). this paradigm was adopted as an appropriate theoretical frame because the study investigated the marginalisation of a person with visual disabilities involved in non-formal and informal adult learning and the strategies he employed to transform this situation. the transformation focused on redressing discrimination, inequalities, barriers, and social structures and systems, which according to oliver (1996), truman (2000) and ndeezi (2004) (cited in nuwagaba & rule’s 2015, p. 258), prevent people with impairments from full social participation. in this way, the critical research paradigm and the social model of disability complement each other. a case study was adopted because, with its focus on the specific case, it can provide a rich description of a particular instance, examining the complex relations within the case and in relation to its context (rule & john 2011), as well as yield insights into the relation between the case and what it is a case of (simons 2009). walter (2009:514) also affirms that case studies can be used to ‘provide insight into educational issues and processes’, in this instance, the adult learning practices of a person with visual disability. in addition, case study research can apply and develop theory (rule & john 2015) such as, in this study, the social model of disability. the sampling approach used in the study combined purposive and snowball sampling (chilisa & preece 2005; niewenhuis 2007). purposive sampling was used to identify the saccos serving the persons with disabilities in the western ugandan district of bushenyi because, according to uca (2009), the district had vibrant saccos. as saccos do not easily release information about their clients, snowball sampling was used to identify katureebe. a leader of persons with disabilities was contacted and she helped identify some persons with disabilities involved in saccos and these in turn identified others, including katureebe. katureebe was selected due to his long involvement in saccos and his role as a leader among persons with disabilities using microfinance. we do not view his experiences as representative of, or generalisable to, all persons with disabilities involved in microfinance, as we indicate in our ‘discussion’ section. nevertheless, this case provides valuable insights into the social model of disability in relation to disability, adult learning and microfinance. data collection involved the use of loosely structured interviews and observations. katureebe was interviewed three times between 2012 and 2013, and each time the interview lasted about one and a half hours. the interview questions focused on type and degree of impairment and their effect on learning and engagement with saccos, the challenges faced during learning processes and the conduciveness of the learning venues. the interviews were conducted in the local language and tape-recorded. they were then transcribed and translated into english by the researcher and a research assistant to improve accuracy and reduce bias (simons 2009). the observations focused on the conduciveness of learning venues at sacco and administrative buildings. for data analysis, the adult learning practices of katureebe constituted the case and the unit of analysis. open coding and axial coding were employed to generate categories and themes (henning et al. 2004). the transcribed data were read many times and four key themes, namely learning, methods, barriers and strategies were identified as axial codes for analysis. under learning, what katureebe learnt such as knowledge and skills in savings, borrowing and attitudes were analysed. in the theme on methods we analysed how he learned, and this included touch–feel–recognise, and questioning. as for barriers, the hindrances to his learning and engagement with saccos were analysed and these included inaccessible teaching and communication approaches, unfavourable physical and psychological environment, and economic and mobility barriers. the analysis of strategies focused on the coping strategies and the support katureebe received to address the barriers. the data analysis process was dialectical and involved assembling and disassembling of data to discover connections and relationships (boije 2010). we as authors do not have impairments but identify with persons with disabilities’ struggles against marginalisation and discrimination. the first author has a sister with a disability and both authors have previously conducted participatory research on disability. although oliver (1992) proposes that persons with disability should conduct their own research, barnes’s (2003) counter proposal is that a researcher does not necessarily need to have an impairment in order to do it. ethical considerations ethical approval was obtained from kyambogo university research grants and publications committee and the uganda national council for science and technology (uncst) in uganda. in south africa, specifically the university of kwazulu-natal (ukzn), it was obtained from the humanities and social science research ethics committee (hssrec). the principle of non-maleficence strongly informed our ethical considerations (bryman 2008; chilisa & preece 2005; marshall & rossman 2011). as katureebe was a person with visual impairment, a category considered vulnerable, particular care was taken to ensure that he was treated with respect and in a manner that was intended not to psychologically stress or humiliate him (bryman 2008). the checklist suggested by mcniff, lomax and whitehead (1996), which includes participants’ right to withdraw, researcher trustworthiness and keeping promises, was adhered to. informed consent informed consent was sought and obtained from the research participant orally in his local language before doing the observations or in-depth interviews, but after he was informed of his rights. the uncst guidelines accept oral consent (uncst 2007). anonymity although respect for anonymity is a good ethical practice (chilisa & preece 2005; rule & john 2011), katureebe insisted we use his real name. he argued that, as he had told us the truth, there was no need to hide his identity. we agreed with him because of nuwagaba and rule’s (2015) argument that going against his wish would signify that his views were not being respected because of his impairment. profile of mr. katureebe mr. katureebe was born partially blind, grew up with low vision, and became blind later in life. he lives in a peri-urban area, in bushenyi, western uganda, among the tribe called banyankore. kinyankore culture looks down on persons with disabilities and treats them as charity cases but katureebe is among those who show that persons with disabilities have potentials and rights. although he lives in a largely oral society, he is adjusting to the literacy requirements of the microfinance industry. katureebe completed primary education, thereafter obtaining a ceramics certificate. he attributes his education to his parents’ support. he is aged 65, very intelligent and a respected leader in the community. he is vigorous for his age although sometimes he can be seen engrossed deeply in thoughts that make him unhappy. his kinyankore name means ‘let us see’, signifying his parents’ uncertainty about his future. he engaged with microfinance partly because he needed additional funds for his livelihood activities, including crop farming and poultry farming (about 200 hybrid layers). due to his old age, he stopped brick-making because it required a lot of energy. he uses a mobile phone for communication as he engages with these activities. katureebe, because of his visual impairment, used his hands to locate where the feeders and drinkers for his chickens were and to collect the eggs from the nesting boxes. he learnt to glide his feet on the floor as he walked instead of lifting them up, thus avoiding crushing the eggs that lay scattered on the floor outside the boxes. he sent boda-boda (motor cycle taxi) riders to buy and bring the bags of poultry feed to the farm. his customers came to the farm, so he did not have to take eggs to the market. he had challenges counting money but developed strategies to address them. katureebe, because he is a trusted member of his community, served as a treasurer of one of the rotating savings and credit association (roscas) [very small microfinance groups at community level where funds are lent to members in turn] whose membership comprised persons with and those without disabilities. as his financial needs and capacity grew, he joined a sacco and obtained microfinance loans a number of times, the highest being 1,000,000 uganda shillings ($400). saccos are bigger microfinancial institutions than roscas. katureebe desired to learn how to read and write braille but was constrained by lack of learning opportunities and the costs involved. he has had many challenges in life. he was forced to abandon his job with a shoe company because of his impairment and his emotions are evident as he tells his story. he acknowledges that disability has made it difficult for him to realise his full potential, yet the responsibility of maintaining the family rests with him as man because he lives in a patriarchal society. the same society bestows on him control over family resources. katureebe faced barriers such as inaccessible teaching and communication approaches, unfavourable physical and psychological environment, and lack of finances that limited his learning and engagement with microfinance. he strove to overcome these barriers, with support from fellow persons with disabilities, saccos, family and community members. results katureebe was found to have participated in two types of adult learning about microfinance – informal and non-formal. rogers (2003) notes that informal learning occurs as a result of interaction between adults as they engage in activities in their everyday lives. non-formal learning, on the other hand, is structured in terms of learning objectives, learning time or learning support and is intentional from the learner’s perspective. what katureebe learnt and how he learnt it katureebe learnt a wide range of skills, knowledge and attitudes, including farming, identifying currency, getting feedback during communication, leadership roles, use of mobile phones and strategies to address barriers to participation and utilisation of microfinance services. the focus of this article is on the learning related to his engagement with microfinance. how katureebe learnt the various ways through which katureebe learnt depended on the interaction between his impairment, the environment and what he was learning. touch–feel–recognise: a strategy of touch–feel–recognise was used in learning how to manage money as described by mr katureebe: ‘i feel the sizes of the notes with my fingers after arranging them (one on top of the other) on my palm and distinguish them by size to determine their value. i know the notes are in the values of shs 1000, 2000, 5000, 10000, 20000 and 50000 and the sizes of the notes correspond to the values of the notes.’ ‘the shs 500 coin has the shortest circumference, is thickest and has an embossed picture of the head of a bird (authors: crested crane – a symbol on the national court of arms), the shs 200 coin is somehow thin with a medium circumference and has an embossed picture of a fish, and the shs 100 coin has the longest circumference, is thinnest and has an embossed picture of a cow.’ this explanation indicates a process involving touching, followed by feeling and then recognising, which nuwagaba (2012) coined as the ‘touch–feel–recognise’ method of learning. this method served katureebe well in identifying ugandan currency notes, which have no embossed features. it is noteworthy that while size distinguishes the notes, thickness distinguishes the coins. he acknowledged that this method could only be used when one had all the notes and the amount involved was not large. questioning: as a learner, katureebe used questioning as a strategy of seeking feedback while communicating with those conducting the training and fellow learners during the learning process. he mentioned that, having become blind later in life, he was aware that people often show they are following a discussion through non-verbal cues, which blind people do not pick up. his strategy was to constantly ask: ummmhhh? aaaahhh? eeee? tukwe? (isn’t it?), onyine? (are you with me?). he often did not complete the words or sentences and encouraged the listener to complete them by asking: ummmhhh? he then used that response as feedback to gauge whether someone was following the discussion or not. practice: katureebe intimated that the leadership skills he exhibited as leader of their rosca were acquired through practising the skills acquired from the cbr training he received in 1990 saying: ‘when cbr was introduced from bushenyi, they educated us, … we made groups and from there we who got into leadership positions started practicing leadership skills’. the skills he mentioned included chairing meetings, making decisions regarding admission of members, communicating on behalf of their group, representing their group in leadership training and other meetings among others. barriers to leaning and engagement with sacco services the barriers that katureebe faced included inaccessible teaching and communication approaches, unfavourable physical and psychological learning environment, and lack of finances which limited his participation as follows: inaccessible teaching and communication approaches katureebe could neither see facilitators’ demonstrations during the learning process nor effectively participate in learning about microfinance services because the facilitators were using inaccessible teaching and communication approaches. this restricted his participation in learning. he noted: ‘but for someone who is blind, when your arm is up, they will point to you and say “you”, but you will not rise to contribute. they will say they meant you (pointing to you again) and again you will not know. now you hear your neighbour saying to you and pulling your shirt: “it is like they mean you”. now because you have first had to listen to this one [the facilitator] and that one [your neighbour], what you had wanted to say gets out of your head. those things also stop us from going for meetings.’ restricted participation in learning caused confusion and resulted in a loss of confidence and concentration, which is an affective barrier. additionally, a facilitator who does not know how to communicate with adult learners with visual impairments may interpret the unintended actions of such a learner as not responding when called upon lack of seriousness or interest in learning. participation restrictions caused by barriers were compounded by his inability to read and write. he experienced the challenges of not being able to keep records of what was happening during learning sessions. he mentioned that he could not read any print materials that were used during teaching. this suggests that inability translates into some inadequacy in learning situations which do not cater for his needs. katureebe expressed grief that his inability to use braille made him miss a lot during the learning process: ‘writing is my problem, it is what disturbs me … the information i have is what i retain by cram work. eeeh-something i forget or which i miss during the learning session is gone in a flash [nikinguruka]. it may not be possible to ask a guide: “when they came to this part, what did they say?” this is because sometimes you find that the guide was not attentive, so the information you miss, that means you have missed it forever. ‘ katureebe noted that barriers went beyond the teaching and learning encounter and included obstructions caused by society’s practice of queuing for food at training events. he lamented: ‘but it pains you when they say that you should all stand to join a line, not so? you smell the scent of the food, others have already started eating and they are swallowing and for you, you are swallowing saliva! put yourself in that situation by the time you get the food, the food will no longer be tasty because your appetite will have already been taken by others, ummmh?’ the interconnectedness of physical, affective and social elements is evident here. society, by using a system of lining up for food, creates a physical barrier which stops him from collecting the food himself, leading to loss of confidence, which is an affective barrier, and conditions that do not allow him to stand in the line with others create a social distance between him and the others. each of the barriers independently, as well as the combination of the barriers, affected his preparedness to learn. unfavourable physical and psychological learning environment the area where katureebe lived was very hilly and very slippery during the rainy seasons. the buildings where microfinance training took place had accessibility and usability issues. many had entrance steps and/or were located in steep-slanting landscapes, and inside there were steps, and cemented or tiled floors, which made use of walking sticks on them problematic. ‘i will not go there’, said karureebe of learning events in inaccessible venues, ‘because that place is not friendly to me’. the psychological environment was evaluated as favourable at certain times and unfavourable at other times. the psychological conditions he described as favourable included those that put him at ease with himself and with the facilitator (gravett 2005). katureebe experienced a sense of inferiority and fear (affective barriers that are part of psychological barriers) which hindered or prevented his participation in learning. he added that some community members and development workers took people with impairments to be of low status, which limited their participation in learning and utilisation of sacco services. he remarked, ‘persons with disabilities who think that their potential and abilities are inferior, fear to mix with others and this hinders cooperation in learning sessions’. we see here the phenomenon of persons with disabilities internalising the attitudes of the able-bodied towards them, which in turn disables them as participants. this reveals that social attitudes have affective consequences. katureebe added that persons with disabilities were afraid of getting loans, saying: ‘we fear to get the money for a loan, and then you fail to manage the project. i want to show you an example, like me, i have a pig which i all along thought was pregnant. if i could see, i would have known that it is not pregnant and taken it where? to a male for servicing … when they [chicken] were attacked by a disease – coccidiosis you are supposed to tell this disease by the sight of their droppings. now if you don’t have an active person at home, they will be attacked by disease and die … because i might put money in a project and i fail to manage it, and i find myself in a loss, why should i ask for a loan? for what? … you decide to die in poverty instead of being taken to prison for failure to pay back a loan. are you following me?’ there were occasions when the physical environment influenced katureebe’s affective state. as explained above, lining up for food in a crowded room that in addition had steps, negatively affected his mood for learning. an unfavourable physical and psychological environment was therefore a hindrance to the learning process. the absence of mobility systems or support (scholl 1986) accentuated the environment’s hindrances. again here we see the creation of disabling social barriers to learning, with accompanying psychological and affective dimensions, which hinder participation. financial barriers katureebe noted that, because of limited income, he could not afford to pay membership fees of groups, transport costs to learning venues, or buy batteries for his radio all the time and so he missed sacco-related messages. he could not afford mobility assistive devices such as white canes or a guide and all these combined negatively affected learning about and utilisation of sacco services. he explained that, because of their impairments and unfavourable environment, persons with disabilities spent more to access services which they could not often afford. he argued, ‘as a blind person – … on top of his blindness he needs a guide. eeh? now life becomes double expensive’. in addition, katureebe was aware that lack of funds denied persons with disabilities sureties when they were applying for loans because would-be guarantors were afraid that persons with disabilities lacked the resources to pay back loans. findings suggest that, while mobility was a barrier in its own right, it was also linked to economic barriers. all these difficulties, however, did not deter katureebe as his philosophy was that disability is not inability and that, through hard work, one can maintain oneself. strategies to address the barriers the strategies that katureebe developed to overcome barriers, such as the touch–feel–recognise method, questioning and practicing, were explained in the section on how he learnt. other strategies, which we now turn to, included engaging in advocacy, having his daughter assist him in learning sessions and sitting close to people who knew he had visual impairment and would assist him when the need arose. he said: ‘in a learning session, when i put my hand up to contribute, some community members help attract the attention of the facilitator to give me an opportunity. they pull my shirt or pinch my ribs to alert me that the facilitator wants me to make a contribution.’ katureebe mentioned that he relied on assistance from his daughter who listened in and observed demonstrations and posters during learning sessions, and later explained them to him. he added, ‘she helps me put a pen on the right spot which made it possible for me to sign in an appropriate place’. katureebe, because of his success in engaging with saccos, was a role model in sensitising saccos on how to improve access to microfinance by persons with disabilities. he was an example of how reducing discrimination against persons with disabilities can make them successful. as a result of this and efforts from disabled peoples’ organisations, saccos had started to provide faster services to persons with disabilities and, together with family and community members, provided personal services to katureebe to address mobility and communication barriers. to overcome financial barriers, the government had introduced disability grants, national agricultural advisory services (naads) and other initiatives. it is therefore evident that katureebe overcame some of the barriers on his own, and with others he was supported by saccos, family, community members and the government. he also helped other people with disabilities to overcome barriers. the principle of interdependence emerges from these strategies as important in overcoming barriers. on the whole, the data do not seem to show any difference in learning approach, barriers to learning or strategies to overcome the barriers whether katureebe was learning informally or non-formally. discussion our discussion begins with the issue of a case study and generalisability, particularly regarding a case study of a single subject. it then follows three lines of argument: barriers to learning and microfinance existed for a person with visual disability in uganda; the social model of disability sheds light on such barriers; and the barriers can be overcome through active engagement and interdependence. a ‘limitation’ of case study findings that is frequently cited is their lack of generalisability. however, case study experts have countered that statistical generalisation is not the point of case study. as yin (2003:32) argues, a case study can generate ‘analytical generalisations’ in which generalisations are made to theoretical propositions rather than populations. in this paper, the findings regarding the social factors that constrained katureebe’s learning confirm the theoretical template of the social model of disability as a way of understanding the experiences of adult learners with disabilities regarding microfinance, as we show below. besides testing existing theory, a case study, even the rich and detailed account of a single subject, as in this paper, can generate new insights into a phenomenon (rule & john 2011; simons 2009). for example, katureebe’s experiences point to the importance of psychological responses to constraining social conditions as a key factor that impacts on learning of the individual person with a disability. applying this finding more widely could happen through a process of what thomas (2010:577) calls ‘abduction’ and ‘phronesis’. here, the focus is on generating practical wisdom from a case study which readers can then apply to related cases and make discerning judgements about appropriateness. this paper sheds light on the experiences of a single participant with a visual impairment regarding learning and microfinance. as such, the findings yield insights, through discerning application, into the nexus of disability, microfinance and adult learning, without succumbing to the claim that katureebe is a representative of all adults with disabilities involved in microfinance or that his experiences can be generalised to theirs. results show that katureebe learnt to engage with livelihood, microfinance and other activities through various methods such as touch–feel–recognise, questioning and practice. however, despite his motivation, capacities and a wealth of experience, katureebe faced a range of barriers such as inaccessible teaching and communication approaches, unfavourable physical and psychological environment, and limited finances. these barriers were interconnected and impacted on each other as they influenced katureebe’s mobility and learning activities. the first category of barriers that hindered his learning was identified as negative attitudes of community members who regarded persons with disabilities as inferior. this is consistent with naami’s (2014) findings in ghana regarding society’s negative attitudes towards persons with disabilities, doubts about their capacities and discrimination against them. stone (1997) argues that some people view persons with disabilities as people who need to be pitied and yet they do not like it and prefer to be viewed as any other person. when they are pitied, it affects their motivation and consequently, their learning potential may be compromised. who (2010b) identifies negative attitudes of families and communities as some of the most damaging barriers. it is likely that such negative attitudes may create negative feelings that may inhibit learning (zembylas 2008). the second category was the unfavourable environment in which he learnt and engaged with microfinance. these included steep landscapes and inaccessible buildings, the kinds of barriers that stone (1997) identified as natural and artificial. the third category was financial barriers. katureebe raised collateral with great difficulty and could not access messages about microfinance and other opportunities because, often, he could not afford dry cells for his radio. inaccessible information about learning and microfinance opportunities constrained his participation in saccos thus compounding his financial barriers. indeed economic factors limit many persons with disabilities’ participation in educational and other development activities (lwanga-ntale 2003; mofped 2008; naami 2015; stone 1997). these three categories of barriers are clearly a societal creation as explained by the social model. viewing the barriers through the social model of disability, oliver (1996) reveals that persons with disabilities were discriminated against by able-bodied society (clark 2006; naami 2014). the study confirms that, despite good legislation, barriers still existed in practice in uganda. similar results had been found earlier in uganda (nuwagaba et al. 2012) and in ghana (naami 2014). the study confirms oliver’s (1996) argument that economic, cultural, attitudinal, physical and social barriers disable persons with impairments. the fact that katureebe’s learning about sacco services was possible with support from his family, saccos and community members is testimony that society which erects barriers is capable of removing them. this could be performed, for example, through supporting the person with impairment and providing a disability-friendly learning environment, thus enabling persons with disabilities access to services and empowering them. this strengthens the social model’s explanation of disability as a social phenomenon (oliver 1996) and the holistic approach to cbr as proposed by the convention on the rights of people with disabilities of 2006. however, watson (2004) criticises the social model for presenting an incomplete picture of disability. for example, it cannot explain katureebe’s personal limitations and impairment and how they affected his learning. he notes that socialisation of disability shifts the focus to commonalities, thus underplaying the complexity and diversity of each person’s lived experiences (watson 2004:101). also, society had accepted katureebe as a role model because he had successfully learned and engaged with saccos and he shared his testimony during training programmes. as national union of people with disabilities (nudipu) (nd) and amfiu (2010) suggest, supporting persons with disabilities to share their experiences during learning, and in other development activities, can help improve their participation. the fourth category, katureebe’s negative attitudes, indicates an interplay between the social and the personal. social barriers may have psychological consequences, including loss of confidence and withdrawal from activities. katureebe’s negative attitude towards himself and feeling of inferiority sometimes made him exclude himself from community activities including learning. a study in ghana revealed that some barriers, such as low levels of self-confidence, negative reaction to societal attitudes and ignorance about their own potential, were personal rather than societal (naami 2014). here, we argue that the social and the personal are closely related. this is because the societal barriers as well as katureebe’s personal barriers influenced each other and affected his learning. the societal and personal factors coupled with an unfavourable learning context further constrained his learning. fear as a result of vulnerability has been identified elsewhere as an inherent barrier in the context of disability and hiv & aids (sweeney 2004). a combination of negative attitudes, inferiority and fear, within a sometimes excluding and discriminating social context, contributed to katureebe’s emotional disposition. zembylas (2008) established that emotional experiences regarding injustices can sometimes inhibit learning (zembylas 2008) and this can also result in the internalisation of oppression (freire 1972). viewing katureebe inherent barriers and those erected by society through the social model (oliver 1996) and critical theory (henning et al. 2004) indicates that these barriers combined to marginalise, oppress and discriminate against katureebe as an adult learner. in katureebe’s case, his positive psychological disposition motivated him to learn. in this process some of the societal barriers were removed by the society that had erected them (clark 2006) thus further enhancing his participation in learning. the study also reveals that, despite the favourable disability policies, the reality shows that persons with disabilities are still faced with barriers. limitations of the study although we had planned to observe katureebe’s involvement in non-formal learning sessions, that was not possible as none occurred during the period of data collection. the data regarding learning processes may therefore have inadequacies as they are based on opinions about the process, although the physical layout and accessibility of training venues were observed. there could be differences between katureebe’s views on the processes and the actual learning processes. in addition, one participant and his experiences cannot be generalised to represent all persons with disabilities’ experiences of microfinance in uganda. nevertheless, his story yields insights into some of the ways in which disability and adult learning interface with microfinance in uganda, and as simons (2009:9) notes, the case study helps ‘understand the case itself rather than generalise to a whole population’, as discussed above. conclusions katureebe, as a person with visual disability, successfully engaged with learning and microfinance. however, he faced barriers to learning and engagement in livelihood and sacco activities. the barriers were actually experienced in a combined manner but were categorised to facilitate analysis. the barriers were theorised using the social model of disability. katureebe developed coping strategies through which he changed the conception of barriers from permanent obstacles that obstructed persons with disabilities to hurdles to be overcome. he helped others and also received help from fellow persons with and those without disabilities, and this interdependence – a key feature of the social model of disability (oliver 1996) – helped reduce the barriers. interdependence, unlike dependence, empowers, as each person has something to offer and to gain. also, unlike the ‘independence’ of autonomous individuals, it shows the connectivity and relationality of persons with disabilities in an african context. this interdependence has the potential to enhance persons with disabilities’ learning and engagement with microfinance. for katureebe, therefore, many of the barriers he faced were surmountable. although some of the barriers could be removed, the impairments remain, meaning he still remains with some challenges such as not being able to see during learning and engagement with saccos. katureebe’s case provides evidence to confirm that the social model of disability can be extended to encompass the psychological consequences of social barriers through a more interactional understanding of biological, psychological and social factors (rule & modipa 2012; schneider 2006). recommendations although our case was exploratory and based on a single case of one participant, findings can be used to suggest that adult education programmes for persons with disabilities should aim at addressing the unique learning challenges of persons with visual and other disabilities. this is because the challenges are not homogenous to all categories of disabilities but relate to disability type. also, the persons with disabilities, as well as the communities in which they live and work, and their agencies that provide services, should be sensitised about disability. each side has a role in addressing the barriers faced by persons with visual and other disabilities. acknowledgements competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing 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accepted: 18 may 2017; published: 26 july 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: parenting children with learning disabilities requires a high level of knowledge and access to resources, information and services. in developing countries, however, these resources and services are not always available. parents in namibia, a developing country, therefore face challenges addressing children’s learning and other developmental disabilities, including challenges related to preventative and supportive interventions. objective: this research focuses on challenges faced by parents as they parent children with learning disabilities in opuwo, namibia. method: in-depth interviews were conducted with eight parents regarding the challenges they face in parenting their children with learning disabilities. thematic analysis enabled the researchers to identify, analyse and report on themes that emerged from the qualitative interview data. results: analysis of the interviews indicated that some participants had only a vague understanding of learning disabilities, as they did not have access to essential knowledge about this phenomenon. they also lacked an awareness of the availability of programmes, services and policies meant to benefit their children with learning disabilities. participants voiced that they, their children with learning disabilities and community members have stereotypes and prejudices regarding learning disabilities. in this study, most of the children with learning disabilities were raised by single, unemployed parents who seemed to have access to less support from external sources than married couples parenting children with learning disabilities. these single parents are usually not married and because of lack of financial support from the other parent, the majority of them indicated that they struggle to meet the financial and material needs of their children. conclusion: the researchers concluded that the participants in this study experience a range of challenges in parenting their children with learning disabilities. the main challenges emanate from financial instability, as well as lack of knowledge regarding services and programmes for children with learning disabilities. this lack of knowledge on the part of participants could indicate poor policy education by policy implementers at grass-roots level. introduction when parents learn that their child has a learning disability (ld), ‘they begin a journey that takes them into a life that is often filled with strong emotions and difficult choices’ (kalek 2008:20). flack (2005:318) mentions inherent difficulties in defining learning disabilities, but presents ‘learners with special educational needs’ and what she describes as ‘the more in vogue, learners with barriers to learning’ as possible definitions. in the african context, the term learning ‘disabilities’ refers to children who experience learning challenges without presenting with obvious physical disabilities and who struggle with comprehension to a greater extent than the average child (abosi 2007). namibia as a developing, low-income country faces challenges in the areas of preventing lds as well as in terms of the inclusion of children with lds in mainstream society. the national policy for mental health (republic of namibia 2005) indicates that challenges faced by parents of children with lds are exacerbated by factors such as community attitudes, cultural beliefs as well as institutional challenges. because of the superstition that evil spirits, witchcraft or a mother’s improper relationships cause learning disabilities, women are often abandoned by their husbands and have to bear the brunt of caring for the child with lds alone (burke 2008; haihambo & lightfoot 2010; harper et al. 2013). haihambo and lightfoot (2010) also report that among some african ethnic groups, fathers often desert their families when a child with a disability is born. opuwo, the capital of the kunene region, is the geographical location of this study. the indigenous inhabitants, the ovahimba people, practise a semi-nomadic lifestyle. opuwo is considered one of the remotest areas in the country, with the lowest literacy rate of 58% among the adult population (15 years and above) (republic of namibia 2012b). school attendance is interrupted by the nomadic lifestyle. however, the government has introduced mobile schools that are established according to the movement patterns of the rural inhabitants to address high levels of illiteracy (hailombe 2011). nationally, namibia is one of the countries with high levels of inequality with a gini coefficient of 0.58 (republic of namibia 2012a). the child poverty rate in namibia is 34.4%, while extreme household poverty is 10.3% (republic of namibia 2016). the government through its integrated early childhood development policy (iecd) has programmes such as the family visitors’ programme which is a child-focused education programme offered by educarers, with a view to provide comprehensive support to children. this programme specifically promotes positive early childcare practices among previously socially disadvantaged groups in rural areas such as the ovahimba, by educating them on antenatal care, nutrition and sanitation (republic of namibia 2007:4). literature review in this study, parents are defined as persons who are in custody of and take a series of actions to promote the development of a child (musweu 2009 in grobler 2012). parenting is therefore the process of promoting and supporting the physical, emotional, social, spiritual and intellectual development of a child from infancy to adulthood (mumbuna 2010). burke (2008) postulates that parents do not necessarily have to be a couple caring for the child together, but could be a single parent. abosi (2007) argues that learning disability is a western-based concept and that there are no indigenous conceptualisations to determine or diagnose lds in africa. cortiella (2011) and atkinson (2010) state that the major causes of neurological disorders are unclear, although lds can be triggered by various factors such as prenatal and birth problems. however, what do seem to be clear are the cross-cutting challenges that are inherent in parenting a child with learning disabilities (harper et al. 2013). the researchers will subsequently discuss the emotional challenges experienced by caregivers, attitudinal and cultural challenges and challenges with resources and services. this discussion will commence with the social model of disability as the theoretical framework for the research. oliver (2004), one of the early exponents of the social model of disability, describes it as an instrument to gain insight into the manner in which society disables people with impairments. the social model of disability arose as a response to the critique of the medical model of disability. the medical model views individuals with disabilities as ‘the problem’, which indirectly denies opportunities to people with disabilities, restricts choice, self-determination and control over support systems in the lives of persons with disabilities. oliver (2004) argues that, according to the medical model, individuals need to be ‘fixed’, which promotes dependency, charity and sympathy. in contrast, the social model of disability forms the basis of a rights-based approach to disability as it promotes independence and stimulates potential in persons with disabilities. booyens, van pletzen and lorenzo (2015) argue that family attitudes and behaviour prevent persons with disabilities from developing to their full potential. promoting independence and stimulating potential in persons with disabilities proposes the opposite, thereby endorsing the social model of disability. the social model of disability posits that at the root of disability and disablement are sociopolitical constructs. hence, disability movements utilise the social model of disability as a political platform and tool to advocate for the rights of disabled people, with the objective of ensuring that they enjoy the status of full citizenship within contemporary society (swain et al. 2004). the social model of disability is also relevant and an integral part in achieving social development because it enables the building of social capital by emphasising the removal of attitudinal and cultural barriers to persons with disabilities (oliver 1990). harper et al. (2013) point out that there are wide-ranging challenges that are integral to parenting a child with lds. children with learning disabilities generally require more attention because they may have additional needs when compared to nondisabled children (vanpelt 2007). grobler (2012) mentions that parents of children with lds may experience constant subjection to a guilty feeling that they may be directly responsible for the disability through genetics, stressful moments while pregnant or abuse of alcohol. a study conducted in the usa by resch et al. (2010) revealed that because of increased parental responsibilities, parents of children with lds can be at a high risk of experiencing depression, physical health problems and decreased quality of life. in namibia, these challenges could be exacerbated by extreme household poverty (republic of namibia 2016). understanding the beliefs and myths about parenting further helps to explain why parents of children with disabilities are engulfed with emotional stress. in namibia, there is a general expectation that children ‘bring happiness to a marriage’ and that womanhood is proven by giving birth to a ‘normal’ child (chilwalo 2010:19). grobler (2012) lists some of the common myths about parenting in namibia: having a child will save an unhappy marriage, to have a baby will solve emotional problems and to have a baby is a romantic experience. these high expectations often turn into some level of disappointment if the child born has impairments, as some communities in namibia perceive a child with impairments as a curse from god and an unfaithful wife is regarded as the cause of the disability (chilwalo 2010). these examples illustrate how attitudes towards disability may impact parents’ experiences and challenges of caring for children with disabilities. proponents of the social model of disability put forward that even though an impairment exists, its significance should be neutral, neither negative nor positive, as disability is the outcome of a complex relationship between a health condition and personal and external factors, such as the circumstances in which the individual lives. the social model of disability focuses on eliminating societal barriers by promoting the rights of persons with disabilities (harries & enfield 2003). meekosha (2011:667) postulates that the majority of research conducted in this field has been based on western experiences, while very few have focused on third-world experiences, particularly within the african context. research has however been conducted on ld and disability in general in various african countries such as south africa (mohamed & laher 2012; mudhovozi, maphula & mashamba 2012), tanzania (mcnally & mannen 2013), swaziland (thwala, ntinda & hlanze 2015), zimbabwe (van der mark & verrest 2014) and kenya (gona et al. 2011). it is indicated in all these studies that children with disabilities in africa are subject to belittling and offensive name calling. abosi (2007) points out that children with lds specifically are subject to derogatory and demeaning names such as ‘slow learners’ or ‘underachievers’. the authors have noted that in opuwo children with lds also have demeaning names such as ‘ejova’, translated into english as ‘stupid’, or ‘otjirengeona’ meaning not a perfect or complete human being. these beliefs culminate in stigmatisation and discrimination against the child or families of a child with lds. abosi (2007) adds that generally because of cultural beliefs about disabilities, some communities perceive disabilities as a punishment for what one has done wrong. this view is supported by various researchers (masasa, irwin-carruthers & faure 2005; mudhovozi et al. 2012; thwala et al. 2015) who refer to witchcraft, punishment by god, curse from the gods and a sign of bad omen. however, mathye and eksteen (2016:591) do not emphasise punishment, but rather the ‘will of god’ as a reason for disability. because of lack of accurate information regarding lds, extended family members may be unwilling to contribute to and support the raising of a child with lds for fear of associated discrimination and stigmatisation. bayat (2014:3) describes two notions that cause resentment towards children with disabilities. firstly, the western judeo-christians perceive creation as being ‘perfect’ or ‘normal’ and thus any deviation from normalcy is seen as evil or the result of sin. secondly, african indigenous religions explain the world in a context of interaction between various natural spirits: sky, water, forest, earth and ancestors. problems and disharmony in life often means two or more spirits are in conflict. illness or affliction is considered to be the result of displeasure of one of the natural or ancestral spirits or a result of possession of an evil spirit (bayat 2014). because of the existence of both these religious and cultural beliefs in africa, a family that gives birth to a child with a disability is subject to social stigma and discrimination. in some instances, as noted by harper et al. (2013), marriages may fail because of accusations of evil spirits when a child with any form of disability is born. traditionally, communities in namibia are organised on patriarchal lines (lafont & hubbard 2007). hence, women are usually the accused in the event of an unsuccessful marriage and as such they bear the responsibility of parenting children with disabilities as lone parents (chilwalo 2010). challenges in parenting children with lds are also encountered because of lack of resources, especially resources related to daily living support. resch et al. (2010) argue that when parents have the perception that their situation (caring for the child with lds) exceeds support at their disposal in terms of resources, it becomes a burden. this phenomenon is not unusual in namibia seeing that extreme household poverty is 10.3% (republic of namibia 2016). in namibia, the lower levels of education, particularly in the kunene region where the study was conducted, may make it more difficult for parents of children with lds to access information on the needs of their children as some information can be accessed through technology such as the internet and social media platforms. the position paper on youth education and skills development (republic of namibia 2012b) indicates that of the 14 regions in namibia, the kunene region has the lowest literacy rate of 58% among the adult population. therefore, although information and resources might be available through private entities, non-governmental organisations as well as government ministries, the low level of literacy may be a barrier for parents to effectively engage with service providers. financial hardship is another challenge that parents of children with lds face. resch et al. (2010) argue that in general, families of children with disabilities, regardless of the type of disability, experience higher expenditure than other families. freedman and boyer (2000) also note that exacerbating these financial challenges is the finding that children with disabilities are significantly more likely to live in families considered to be poor. a possible explanation could be that disadvantaged communities may lack adequate resources for healthcare, experience poor access to vital information on the well-being of families, as well as low educational levels. lukemeyer, meyers and smeeding (2000) support this view by pointing out that children in low-income families are more likely to suffer disabilities than more affluent families, while a child’s disability might also increase the risk of the family being poor. park, turnbull and rutherford turnbull (2002:160) make the statement that ‘poor families of children with a disability will be affected by poverty more severely than either poor families of nondisabled children or affluent families of children with a disability’. in namibia, adverse conditions such as poor antenatal care, nutrition and sanitation hinder the early detection and prevention of impairments in children (republic of namibia 2007). landman and lombard (2006) argue that the focus on individuals and the family within a developmental approach include employing a capacity-building, strengths perspective and effecting structural changes within the community. the government of the republic of namibia is championing the development of an integrated social development policy that will set the foundation for an efficient social development welfare system in namibia (republic of namibia 2014, in chiwara 2015). chiwara (2015) concludes that through a combination of social and economic goals, the well-being of society as a whole lies at the heart of social development. in the namibian context, social workers can engage families of children with disabilities in a number of ways that can enhance their resource base. one such way is empowering parents to establish small enterprises that can generate income that will help them meet their and their children’s needs. the researchers are of the view that social workers could also engage these parents in community-based rehabilitation committees (cbrcs) where they can be empowered with information regarding disabilities, as well as in networking with organisations for people with disabilities to enhance self-help, peer support and community-based projects. parents of children with disabilities face the challenge of fragmented services as children’s services in namibia are provided by different ministries (republic of namibia 2011). the ministry of gender equality and child welfare deals with promotion of the rights of orphans and vulnerable children; the women and child protection unit under the ministry of safety deals with investigations of abused children; the ministry of labour and social welfare administers social grants that children with disabilities and orphans are entitled to; the ministry of health and social services, through the medical officers, approves or disapproves the applications for social grants, both for adults and children (republic of namibia 2011). the fragmentation of these services may pose challenges to those who want to access them. parents, through the namibia planned parenthood association, voiced the concern that the official procedures in accessing social grants make it difficult for them to apply for grants for their children (namibia planned parenthood association 2013). in summary, apart from frustrations in accessing services, the parents of children with disabilities also face challenges in terms of beliefs and myths about parenting in general and about parenting children with impairments. this leads to the risk of experiencing emotional and physical health problems. emotional stress is further exacerbated by poverty, lack of resources or a lack of knowledge regarding available resources. advocating for the removal of attitudinal barriers, promoting independence and stimulating potential in persons with disabilities, as proposed by the social model of disability, will promote the right of persons with disabilities. objectives the goal of this study was to explore and describe the challenges faced by parents of children with learning disabilities in opuwo, namibia. as social workers, the researchers have an interest in the social functioning of such parents. challenges faced have a direct influence on social functioning. specific objectives were to (1) contextualise learning disabilities as well as parenting as phenomena by reviewing the literature, (2) to explore and describe the challenges of parenting children with learning disabilities from the perspectives of the parents in this study and (3) to make recommendations for practitioners regarding the experiences of parents who parent children with learning disabilities in similar contexts. research methodology in this study the researchers aimed to obtain an in-depth understanding of the experiences of parents in parenting children with lds. based on kumar’s (2011) characteristics of qualitative research, namely an unstructured, flexible and open approach to enquiry, this study was qualitatively rooted in order to obtain an in-depth understanding of these experiences. information regarding personal challenges in raising a child with lds may be sensitive in nature and affect individuals on a personal level. therefore, the researchers utilised a phenomenological research design in order to obtain the meaning of these personal challenges as experienced by parents. this design allowed parents to reflect on and share their life world as it relates to the learning disabilities of their children (fouché & schurink 2011). creswell (2007) as cited in fouché and schurink (2011) states that at the root of phenomenology is the intent to understand the phenomenon under study and therefore to provide a description of lived experiences by multiple subjects. the study population was all the parents of children with lds at a primary school in opuwo, in a class of 20 children with learning disabilities. this is the only inclusive school with a special class in opuwo. these learners were not formally assessed for or diagnosed with a ld by a professional; they were placed in this class because of their poor academic performance. by means of convenience and availability sampling, only eight caregivers volunteered their participation in the study. participants were purposively selected seeing that they had to be a parent of a child in the class for children with learning disabilities. the sample comprised parents who were willing to participate and who were available to take part in an interview (kumar 2011). participant characteristics are displayed in table 1. table 1: biographical profile of participants. as indicated in table 1, the mean age of children reported by the caregivers was 9.63 years ( = 9.63; sd = 1.19), while the mean age of the participants was 39.13 years ( = 39.13; sd = 4.73). the ages of the children ranged from 7 to 12 years. seven out of eight of the represented children were boys. this was an outcome of convenience and availability sampling, even though both boys and girls were enrolled in the specific class for children with lds. the table also indicates that six out of eight participants were biological parents, and two participants were foster parents. of these eight participants, only two were married, one was divorced while the rest were never married. four out of eight participants were unemployed. all participants were women and were otjiherero speaking. given that the researchers sought to obtain sensitive information regarding challenges faced by parents in parenting children with lds, unstructured one-to-one interviews were utilised. greeff (2011) points out that at the root of unstructured interviewing is an interest in understanding the experiences of people and the meaning they ascribe to that experience. to develop insight regarding the main issues that affect parents in parenting children with lds, the interviews were guided by the following research question: ‘what are the challenges faced by parents in parenting children with learning disabilities?’ the two sub-questions, relating to challenges, were ‘what services and programmes are accessible regarding the parenting of children with learning disabilities?’ as well as ‘how do social workers provide assistance in addressing the challenges faced in parenting children with learning disabilities?’ the researchers utilised the services of an interpreter during four of the interviews where participants could not express themselves adequately in english. where the participant was not fluent in english, the researcher asked for permission to involve an interpreter. these interviews were then conducted in otjiherero. the interpreter signed a confidentiality agreement as an assurance of abiding by the principle of confidentiality. all interviews were audio recorded to facilitate transcribing and translation. this aspect was included in the informed consent letters signed by participants. after transcribing and translating the interviews, the researchers identified, analysed and reported on patterns and themes within the data by means of thematic analysis (braun & clarke 2006). thematic analysis allowed the researchers to describe the data set in rich detail, seeing that this method of analysis involves searching across the data set to find repeated patterns of meaning (braun & clarke 2006). to ensure trustworthiness of qualitative research, peer debriefing was conducted with social workers outside the research project who work closely with children with disabilities in the opuwo district and who have experience of the research population (lietz, langer & furman 2006). their knowledge of the target population and subsequent input increased the credibility and authenticity of the research. the researchers also kept an audit trail of all the steps, actions and decisions made throughout the research to ensure that the research was logical and well documented (schurink, fouché & de vos 2011). discussion of findings challenges experienced by caregivers based on knowledge and perceptions regarding learning disabilities. challenges faced by participants regarding accessibility of specialised programmes and services for the child with a ld. support received by participants from family and external sources. challenges experienced by caregivers based on knowledge and perceptions regarding learning disabilities caregivers demonstrated some challenges in comprehending lds. although their children were in the class for learners with learning disabilities, no formal diagnosis regarding the disability was conveyed to any of the participants. this lack of information was confirmed by specifically asking participants to provide information on this aspect. they expressed themselves in the following manner: ‘i think it is when a child cannot cope and his mind is behind that of other learners’ (participant 1, 46-year-old married foster parent, employed as a teacher). ‘umm … i think it is when a child has got a problem in thinking and cannot concentrate or listen to what he is told … i don’t know’ (participant 8, 34-year-old single mother, unemployed). participants seemed to rely on casual information from friends and teachers who do not have specific knowledge in the domain of lds. the following illustrate how some participants were informed about lds and the services provided: ‘you know that when he was born the pregnancy was only six months and was put in the incubator for three months. so i thought maybe that’s why the mind is not progressing. i said to myself let me take him to the teacher and be admitted in the special class at the junior school. … after three months she told me ooh! the child’s mind is behind the age.’ (participant 1, 46-year-old married foster parent, employed as a teacher) ‘the teacher then called me and said this child is a problem … we tried and tried but the child is not improving. why not take this child to special class at the junior school? it’s not like the child is mentally sick he is just fine, he is just ok. we just don’t know why the child goes slowly. i then took him to the junior school.’ (participant 6, 44-year-old single mother, unemployed) the above indicate the haphazardness of information regarding lds. no participant received formal information regarding lds and the services available. instead, these caregivers relied on informal sources of information. even though vague, information from these sources resulted in parents’ growing awareness of their child’s difficulties. freedman and boyer (2000) state that the initial attempt to obtain information regarding a child’s disability is a time-consuming and difficult process as caregivers are bound to meet obstacles. these authors conducted a study with 40 parents of children with disabilities in the usa. the parents revealed that access to information is a difficult process as caregivers have to hunt for relevant services and information. parents of children with lds in namibia are no exception to this finding, seeing that namibia is a developing country with fewer resources and services available than in the usa. the lack of understanding of ld as a phenomenon is emphasised by abosi (2007), who argues that in africa most governments have not considered it worthwhile to invest in the research of lds to determine their causes and prevalence. abosi (2007) further mentions that because of lack of a unified assessment process regarding lds in africa, there is a vague understanding of the term among the general public. however, participants in this study managed to mention some of the components of lds such as being unable to cope in class, lacking concentration when listening and being unable to do well in school. these components imply the impairment of cognitive functioning as described by the department of health in england, cited by gobrial (2009). from a social model of disability perspective, lack of formal communication regarding the disabilities and impairments of children inhibits self-determination and social justice for children with lds and their families. proponents of the social model of disability, such as harries and enfield (2003), mention that persons with disabilities and where appropriate their families and advocates should have access to full information on diagnosis, rights and available services and programmes. participants did not perceive lds as a form of disability but as general poor performance at school caused by certain circumstances. some participants expressed their views about these circumstances in the following manner: ‘in my understanding my separation with my husband is the contributing factor to his poor intellectual performance because he used to love his father so much and now that love is no more.’ (participant 4, 41-year-old divorced mother, employed as a cleaner) ‘my child grew up with my mother and i think the way she was brought up is not good because she used to do everything for her, that’s why she cannot perform at school.’ (participant 6, 44-year-old single mother, unemployed) these statements indicate that participants realise that their children are not performing adequately on an academic level. however, they regard separation from loved ones and a pampered and spoilt way of upbringing by caregivers as the cause of their child’s poor performance in school. knowledge and perceptions regarding learning disabilities can be regarded as a challenge, as indicated above. theme 2 focuses on accessibility of specialised programmes and services for the child with a ld. challenges faced by participants regarding accessibility of specialised programmes and services for the child with a learning disability regarding awareness of programmes and services, all participants specified that they were not aware of specific programmes and services for lds. usually, programmes for children with learning disabilities that parents need to be aware of relate to medical care, educational support and daily living support. in opuwo, such parents may approach the ministry of gender equality and child welfare for financial assistance if need be; they may engage in cbr initiatives or seek informative counselling from social workers in various government ministries. freedman and boyer (2000) state that obtaining accurate and useful information about these services and programmes is a major problem encountered by parents of children with disabilities. the participants expressed the following views: ‘we are struggling you see. i want our government to really assist us in this’ (participant 7, 42-year-old married mother, employed as a teacher). ‘there are no services or programmes i am currently benefiting from’ (participant 6, 44-year-old single mother, unemployed). as participants indicated that they were unaware of programmes and services, they also did not have knowledge about relevant policies. rainey et al. (2003) postulate that addressing socio-economic problems sustainably encompasses a set of policies and activities that work together to create economic vitality and social equity. it seems as if the participants’ lack of knowledge about lds as a phenomenon results in a lack of knowledge pertaining to the relevant services, programmes and policies. therefore, based on a lack of information on lds, almost all participants had limited access to services pertaining to lds, namely social grants, government educational support and specialists in lds. important services and programmes available for children with disabilities, such as family visitors’ programmes, community-focused programmes, mentoring programmes and orphan care programmes that focus on empowering children with disabilities, including those with lds and their families, were not accessed by the participants seeing that they were unaware of these programmes. ideally, community-based welfare structures such as cbrc and village health workers assist in initially identifying children with disabilities. the participants were however not familiar with such services. lack of access to information as well as possibly other access barriers inhibit children with lds to access essential services such as those mentioned above (campbell & oliver 1996; harries & enfield 2003). the researchers therefore found that because of specialists not being available and accessible, none of the participants took their children for a formal diagnosis of the ld as within their context they relied on informal information. although some participants had some idea about specialists, they did not know how to go about consulting such a specialist. these caregivers had the following to say: ‘last year i wanted to take him to those people who test the mind but i could not get hold of them. i even ask her (special class teacher) where i can get those people because i really want to know what is the problem with this kid and until now i did not see them.’ (participant 1, 46-year-old married foster parent, employed as a teacher) ‘the only challenge i remain with is that i need my child to go through the intelligence tests but i do not know who does those things, that’s my concern.’ (participant 7, 42-year-old married mother, employed as a teacher) these statements reveal the struggles and frustrations that participants experience in accessing specialist services. this confirms what taylor (2005) refers to when mentioning the struggle to access services and that these parents must strive to become problem solvers, companions and disciplinarians in trying to find the most appropriate way of bringing up such a child. although the namibian government provides social grants for orphans and vulnerable children and caregivers could have benefited from such services, not all the participants knew about such a government programme (republic of namibia 2011). participants expressed themselves in the following manner: ‘i don’t know of such service, we just struggle with what we have’ (participant 5, 35-year-old single mother, employed as a general worker). ‘i have tried to get assistance from the government to get money to support this child but nothing came out’ (participant 8, 34-year-old single mother, unemployed). the social model of disability which is founded on the notion of socio-economic empowerment implies that social and economic structures disable impaired people by excluding them from full participation in mainstream socio-economic activities (oliver 2004). this is evident among the participants who expressed that they experience financial hardships and are not aware of services and programmes that their children should be benefiting from. the difficulties that caregivers experience in accessing services, which could leave them feeling demoralised, are also confirmed by the findings of resch et al. (2010:142) in their research in the usa where one of the participants in their study mentioned: ‘we hear so many no, no, no, when we are looking for information; it’s a fight for everything’. with the fragmentation of social services in namibia, a similar challenge may be experienced by parents of children with lds (republic of namibia 2011). access to services regarding lds was therefore a noticeable challenge, as indicated above. this supports the finding by booyens et al. (2015) that caregivers in botswana, malawi and south africa experienced difficulties in accessing information and services for children with disabilities. they reported on insufficient and inadequate resources available to children with disabilities and their families, especially those living in rural communities. this challenge is exacerbated by the fragmentation of services as children’s services in namibia are provided by different ministries (republic of namibia 2011), as discussed under the literature review. saloojee et al. (2007) also referred to fragmented services and parents being ill-informed based on research conducted in orange farm in south africa. theme 3 focuses on the support received from families and external sources in trying to assist children with lds, as well as their parents. support received by participants from family and external sources the children’s caregivers mentioned three levels of support, namely: support from the biological fathers, support from other family members, as well as support from the community. it was however of interest to learn that participants described the support provided by the biological fathers as minimal and support from the community as even less. some communities in namibia perceive disabilities as a punishment for what one has done wrong (chilwalo 2010). this could perhaps explain the minimal support received from the biological fathers of the children with lds, as well as from the community. only two participants mentioned the involvement of fathers in raising their children. the other six participants were solely responsible for the well-being of the children. asked what support they receive from the biological fathers of the children with ld, participants indicated the following: ‘i am not getting support from anyone, the father of the child is not supporting; i am just struggling on my own. i cannot force someone to support the child. i will try to support with the little that i have. since the birth of this child, the father never supported.’ (participant 5, 35-year-old single mother, employed as a general worker) ‘i don’t know about the support of the father but i recall one point when he sold a goat and tried to support the child but the money did not reach the child who was staying with the grandmother by that time.’ (participant 3, 37-year-old single foster parent, unemployed) ‘there is no assistance from the father of the children.’ (participant 8, 34-year-old single mother, unemployed) these findings could relate to chilwalo’s (2010) statement that myths and beliefs about a child with disabilities, such as ‘a curse from god’ and ‘an unfaithful wife’ being the cause of the disabilities, may cause a lack of cooperation from the father of the child and to some extent marriage breakdown. in the context of a patriarchal society like namibia, where men have decision power, these myths and beliefs result in assigning blame to women (lafont & hubbard 2007). burke (2008) adds that because of the superstitions mentioned above, mothers are in most instances left to bear the brunt of caring for the child with disabilities. based on their research in uganda, mcnally and mannan (2013) confirmed this finding and indicated that mothers of children with disabilities were the primary caregivers. in uganda, rejection by fathers is common. spousal and immediate family support is therefore absent; the onus of care falls on the mothers (mcnally & mannan 2013). mudhovozi et al. (2012) also emphasise that in limpopo province, south africa, the burden of raising a child with disabilities lies with the mother only. in this study, many participants did not receive much support from family members for their children with learning disabilities. ‘i don’t have any support from anyone. the only time i used to get support was when my mother was still alive. she could give me some food and money but now, nothing. my uncle just helped me once last week when he saw that the children were hungry. he bought a bag of maize.’ (participant 8, 34-year-old single mother, unemployed) ‘we are not staying together with family so there is no support from the family’ (participant 2, 34-year-old single mother, unemployed). ‘neither the family nor the community assists me in supporting my children’ (participant 4, 41-year-old divorced mother, employed as a cleaner). these sentiments indicate the challenges that participants experience as the sole caregivers of their children with disabilities. an interesting observation in this study is that participants who were lone parents, who did not receive support from the biological fathers, also mentioned that they were not receiving any support from family members. family support was mostly rendered to a child of a married couple. this may be influenced by culture, as one participant mentioned that if a ‘himba’ woman, a culturally rooted ethnic group in the north-west of namibia, is impregnated by a married man, he will not support the child. if children from these single parents should have lds, the possibility that they might suffer a double stigma is increased; hence, little or no visible support is received from family members. the lack of support by family and community members seems to predispose participants to stigma and discrimination (harries & enfield 2003; swain et al. 2004). the third level of support explored during the interviews is community support. the majority of participants did not receive any community support. ‘there is no direct involvement of the extended family and the community because i try to provide what my child needs’ (participant 7, 42-year-old married mother, employed as a teacher). ‘i do not have any support from anyone or the community. in the community no one helps other people’ (participant 6, 44-year-old single mother, unemployed). from the findings, it was evident that most participants were not receiving support from the biological father of the child, their family members or the community at large. as no one experienced any form of social work support, most of the participants expressed a need for support from social workers during the interviews. ‘i feel social workers should teach some of us parenting skills because sometimes we spoil them by giving them too much attention. sometimes i think of doing it the african way, just commanding.’ (participant 7, 42-year-old married mother, employed as a teacher) ‘the thing is, i am unemployed and i am struggling to support my child. i just wish if the social workers can help me secure a job so that i can fend for her and her siblings.’ (participant 3, 37-year-old single foster parent, unemployed) the above statements plainly indicate that these participants rely on their own resources to care for their children with lds. jackson and abosi (2006) mention that the behaviour and practice of almost all people in africa have been influenced by modernity to some degree but when it comes to an association with children with disabilities, many are highly conservative as they prefer to keep children with disabilities at arm’s length. mcnally and mannan (2013) are in support when they refer to increased isolation experienced by caregivers in tanzania as supporting children with disabilities is not regarded as the responsibility of the community. conclusions it became clear from the research that parents of children with lds face a range of challenges, such as difficulties accessing information, services and programmes. the fragmented nature of these services may add to the challenges experienced in this regard. these findings support those of abosi (2007), who argues that lds are often not clearly understood in african contexts (abosi 2007). participants were also uninformed regarding essential policies meant to benefit their children with learning disabilities. it could also be concluded that the participants themselves seem to have stereotypes and prejudices regarding lds. the majority of fathers, referred to by the caregivers, also experienced prejudices as fathers are thought to be avoiding prejudice by distancing themselves from the children; therefore, they did not take responsibility for the emotional and financial support of these children. extended family as well as community members also distanced themselves from the caregivers and their children with learning disabilities. some participants voiced that they wanted to be assisted by social workers in areas of parenting and job opportunities in order to assist their children living with lds. it is the view of the researchers that social workers may have an opportunity to make a difference in the area of lds if they empower the caregivers of these children, as well as the children themselves. in the next section, recommendations in terms of improving the situation of parents of children with lds and their children will be made. recommendations social workers as change agents can make a difference in the lives of children with lds and their families in a number of ways. by using the social model of disability, social workers can address sociopolitical constructs that cause challenges such as the perceptions of and attitudes towards lds. seeing that myths and cultural beliefs about learning disabilities exist in the context of namibia, social workers in particular should, through community awareness, educate communities in terms of lds, policies regarding lds as well as special and inclusive education. social workers may do this by working with community health forums, health extension workers or other established forums. most importantly, social workers in their role as educators and advocates can help educate communities on the rights of people with disabilities. areas of focus as stipulated in the convention on the rights of persons with disabilities are that persons with disabilities deserve to be respected as individuals with inherent dignity; they should not be discriminated against on the basis of their impairments and deserve equality of opportunities (united nations 2008). regarding access to services, practitioners should advocate for the rights of persons with disabilities and their caregivers to access information and other necessary services to meet their needs. accessibility to information can be enhanced by utilising cbrc as well as the constituency child welfare forum to disseminate information regarding lds. this is an appropriate role for social workers, seeing that the core values of the social work profession include service delivery and the enhancement of social justice, dignity and worth of individuals, groups and communities. in namibia, social workers can embrace their traditional role of assisting beneficiaries (parents of children with lds and their children) by linking them to resource systems, such as the family visitors’ programme, mentoring programmes, referral to appropriate schools, health services including specialists for ld diagnosis, cbrc as well as other relevant services as per the provision of the iecd. furthermore, social workers can monitor the delivery of such services through conducting home visits and child welfare forums to ensure that the services are structured, organised and culturally accessible and practised in a way that is in accordance with the human rights convention. to assist caregivers of children with disabilities who face challenges caused by fragmented services, practitioners can advocate for the unification of these fragmented services and lobby the applicable ministry in namibia. as participants were not aware of any existing policies pertaining to lds, it is recommended that social development practitioners embark on wider policy education and mobilisation of grass-roots participation in formulating public policies relating to lds. most parents of and children with lds in this study did not receive support from extended family members and the community. practitioners can embrace the ubuntu concept as a framework for mobilising support for children with lds. patel (2015) describes ubuntu as caring for and promoting the human dignity and worth of people. this can be attained by conscientising community structures such as traditional leadership, religious and political leadership on the roles and benefits that families and communities share in terms of collective existence. if a community coexists to support children with disabilities, parents or caregivers could be informed and encouraged to access antenatal services, nutritional services as well as professional services critical to the development of children. this will enable children with learning disabilities to exercise their worth as human beings. the socio-economic circumstances of most participants posed a challenge in providing for the material welfare of their children with lds. therefore, practitioners should empower these caregivers by helping them to access government grants or to establish small enterprises which can generate income that will help them meet their needs seeing that they are often not able to rely on the fathers of their children for emotional and financial assistance. this finding is in support of previous research findings. in order to fill the knowledge gap, further research is required within the namibian context on the perceptions of community members regarding the phenomenon of lds. it is also recommended that further research be conducted on a broader target population seeing that this study focused on the opuwo community only. it will be valuable to explore and describe a cross-section of perceptions regarding learning disabilities within a broader context. where interpreters are used in future research, the possibility of meaning being distorted by the paraphrasing of words in the process of translation should be addressed in a specific attempt to ensure authenticity. in this research, this could be considered as a possible limitation of the study. this research confirmed previous research findings regarding stigma related to disability, which results in lack of support by fathers and increased isolation. parents were not aware of specific programmes and services for vulnerable children, which includes children with lds. this problem is exacerbated by the fragmentation of services. this highlights the plight of children with disabilities and their parents in impoverished communities such as opuwo, namibia. social workers are 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discussion conclusion acknowledgements references appendix 1: interview schedule. about the author(s) sadna balton center for alternate and augmentative communication, university of pretoria, pretoria, south africa speech therapy & audiology, chris hani baragwanath academic hospital, soweto, south africa kitty uys department of occupational therapy, university of kwazulu-natal, durban, south africa erna alant center for alternate and augmentative communication, university of pretoria, pretoria, south africa department of special education, indiana university, bloomington, united states citation balton, s., uys, k. & alant, e., 2019, `family-based activity settings of children in a low-income african context’, african journal of disability 8(0), a364. https://doi.org/10.4102/ajod.v8i0.364 original research family-based activity settings of children in a low-income african context sadna balton, kitty uys, erna alant received: 07 feb. 2017; accepted: 30 aug. 2018; published: 23 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there has been an overwhelming call to improve the understanding of how children develop within an african context as euro-american definitions of competence have been uncritically adopted as the norm for children in africa. the activities that children engage in within the family setting are seen as important to understand how children develop within context. the use of activity settings is closely aligned with a strengths-based perspective of family-centred practice and contributes to improved sustainability of intervention. objectives: this study that was conducted in soweto, south africa, aims to describe activity settings that typically developing young children in low-income african contexts participate in. method: a descriptive design using structured interviews was utilised to obtain information about activity settings that children aged 3–5 years and 11 months engaged in. structured interviews with 90 caregivers were conducted. results: findings show that children participate in a variety of activities with varied participation levels. the types of activities are dependent on the context and perceptions of caregivers. conclusion: these findings draw attention to understanding activities that children engage in within the family context. keywords: activity settings; culture; family; indigenous knowledge; intervention; contribute; low income; utilised; euro-american; poor sustainability. introduction children within the african context have historically been judged by euro-american definitions of competence, which have uncritically been adopted as the norm for all children (nsamenang 2008a, 2008b; pence, evans & garcia 2008; pence & schafer 2006). ecocultural theory proposes that indigenous conceptions of competence should be uncovered by looking at how children are reared according to what parents know about what would be useful for their children within their specific communities (berry 2003; norton 1990). various studies (beckert, strom & strom 2004; bornstein & cote 2004; evans, matola & nyeko 2008; gaskins 1999; geiger & alant 2008; rao, mchale & pearson 2003) have shown that each culture focuses on what is valued and valid within its specific context (serpell & marfo 2011; super et al. 2011). according to ecocultural theory, development occurs along pathways determined by culture and society, and actively chosen and engaged in by parents and children, within a particular cultural ecology (weisner 2002; weisner et al. 2005). these pathways consist of activities and practices that are viewed as being the most important influences in the child’s and family’s life (bernheimer & weisner 2007). children experience different kinds of learning opportunities, depending on where they live, what their parents enjoy doing and their values and desires for their children and families (dunst & bruder 1999). it is within this context that the family context provides developmental pathways for children, which are made up of the everyday routines that children engage in (weisner 2002). the family therefore is the primary milieu in which children begin to learn the competencies expected of them within their culture and community (britto & ulkeur 2012; turnbull, turbiville & turnbull 2000). activity settings which consist of the everyday experiences and events that involve the child’s interactions with various people and the environment have been recommended as the method of looking at the child within context (farver 1999; trivette, dunst & hamby 2004). through participation in activity settings, children learn what is expected of them and learn how to determine which activities are considered appropriate or inappropriate (tudge et al. 2013). according to weisner (2002), parents want children to have the dispositions that would help them gain relevant skills to maintain a respectful life in their community and family. children learn these skills through activity settings, which provide an understanding of how families structure their time, based on tradition, the socio-economic system within which they live and the orientations provided by culture (goldenberg, gallimore & reese 2001; tudge et al. 2013). activities are therefore useful units for cultural analysis, because they are meaningful for both parents and children (weisner 2002). dunst (2007) defined early childhood intervention as the experiences and opportunities afforded to children with disabilities by their parents and other caregivers that are intended to promote their competencies to shape and influence their interactions with people and objects. it therefore becomes critical for early childhood interventionists to gain insight into the activities that young children are exposed to within family settings as this influences their participation, engagement and learning. this article describes the of activities that children living in soweto, south africa, participate in within the family context. the types of activities, frequency of participation and the importance of activities as rated by caregivers are discussed. method design a descriptive design using structured interviews was utilised to obtain information about the activity settings that children aged 3–5 years and 11 months engaged in. face-to-face interviews with 90 caregivers were conducted. a structured interview schedule consisting of a written list of closed-ended and open-ended questions was used. this approach was chosen as it holds no bias against participants who have varied literacy levels. ethical clearance was obtained from the ethics committee in the faculty of humanities at the university. setting participants reside in soweto, south africa. soweto is a large residential urban area where a diverse group of african cultural groups reside. this city has seen rapid development and transformation over the past few years (phadi & ceruti 2011). however, a large proportion of soweto’s residents remain unemployed (patel 2012) and accommodation is mostly limited to small houses with limited space (seekings 2000). the extended family system, which consists of multi-generational female-headed households, is still the most prevalent structural family form in soweto (moeno 2006). sampling permission to conduct the study at african self-help association’s (asha) crèches in soweto, south africa, was obtained in writing from the director of asha. four crèches were randomly selected from a group of 40 crèches run by a non-governmental organisation in soweto. consent letters were sent to the caregivers of children who met the selection criteria of being between 3 and 5 years and 11 months with no known disability. typically developing children were identified by the asha’s inclusion coordinator who is responsible for developmental screening at the crèches. participants were selected through a stratified sampling procedure that accounted for age, gender and development. ninety participants were assigned to groups of children from three-, fourand five-year age groups with equal gender representation among the children. participants the majority (56%, n = 50) of participants were mothers, followed by grandmothers (20%, n = 20), fathers (10%, n = 9) and others which included cousins, siblings and neighbours (10%, n = 9) and aunts (4%, n = 4). the age of participants ranged from 16 to 72 years, with 52% of participants being under 32 years, 22% between 35 and 45 years, 17% between 46 and 59 years and 9% over 60 years. of the participants, only 20% completed higher education; 38% completed matric, which is the final year of high school in south africa; 31% completed secondary school; 10% completed senior primary; and 1% completed junior primary. the monthly income of the majority (75%) of families was below the minimum individual taxable income of r4500.00 (usd $67.79) per month (south african revenue services [sars] 2008). an average of 5.6 family members share a four-room house. description of interview schedule the interview schedule was based on the parent survey of home and family experiences (dunst & bruder 1999). permission to use the survey was obtained in a face-to-face meeting with one of the authors. the survey was adapted for the south african context through an expert panel and focus group discussions (balton 2009). the expert panel consisted of three speech therapy assistants employed at a hospital in soweto. the speech therapy assistants have over 20 years of experience each in working with families from the soweto community and also live within the same community as the target population. the interview schedule (appendix 1) included a list of closed-ended and open-ended questions. part 1 included biographical information and part 2 contained 50 closed-ended questions relating to activities that children participated in. the following eight main categories of activities were included: (1) child routine activities (family mealtimes, bathing, dressing and undressing, toileting, washing hands, brushing teeth, haircut or styles, visiting the local clinic and carried on the back); (2) play activities (running, jumping and chasing, playing with toys, pretend games, lap games, playing with water, playing with sand, hand or finger games, ‘mokuku’ hide-and-seek, building blocks, arcade games and cell phone games); (3) early literacy activities (having a conversation, telling stories, listening to stories, reading or looking at books, colouring, drawing, painting, cutting and pasting); (4) entertainment activities (watching television, singing, listening to music and dancing); (5) chores (cleaning the yard, washing socks and underwear, setting the table, assisting with preparing meals and gardening); (6) spiritual activities (attending church, praying, attending an ancestral ceremony and attending funerals); (7) family activities (family gatherings, visiting family or friends in the neighbourhood and visiting the family or traditional home); (8) community activities (visiting shopping malls, eating out, going to the ‘spaza’ informal shop, attending parties, attending weddings, taxi rides and visiting a park). in part 2 of the interview, participants were asked to comment on the frequency of participation and reasons for non-participation and to identify the partners involved in the activity with the child and state the main purpose of the activity. the participants were also required to rate each activity in terms of its importance for learning on a scale of 1–3, with 1 = not important, 2 = important and 3 = very important. part 3 of the interview was composed of four open-ended questions to obtain insight into caregiver beliefs and perceptions about activities. general procedures data collection procedures the scripted, structured face-to-face interviews were conducted by the researcher at one of three crèches. the interviews were audio-taped and took approximately 35 minutes to complete. the researcher commenced the interview by stating its purpose and allowing participants time for questions. instructions were read out exactly as they appeared on the interview schedule, following a sequential order of questions and using the same material for all interviews (mathers, fox & hunn 2002). the responses were recorded directly on the interview schedule. the interview concluded with the interviewer thanking the participant and allowing time for any further questions about the study. reliability of data thirty per cent of the interviews were randomly selected by two speech-language therapists who checked the reliability of the recording and the coding of information (mcmillan & schumacher 2001). inter-rater agreement of 100% was achieved. data analysis the data were analysed using both qualitative and quantitative methods. descriptive statistical procedures, in particular frequency tables, were used to organise the data collected. the results were quantified in terms of means, standard deviation, frequencies and relationships between variables. a content analysis procedure was conducted on responses to open-ended questions in order to identify common categories that were then utilised to establish codes. ethical considerations ethical clearance was obtained from the ethical committee at the university of pretoria, reference number: 21277177. results table 1 shows the percentage participation rate in activities as well as the frequency (daily, weekly, monthly and annually or none) of participation. participation levels were subjectively divided into high (80% – 100%), moderate (50% – 79%) and low (< 50%). high daily participation was recorded for family meals (100%), bathing (100%), dressing and undressing (100%), toileting (100%), washing hands (100%), brushing teeth (99%), having a conversation (95%), watching television (92%) and listening to music (87%). moderate daily participation rates were indicated for playing with toys and praying (78%), singing (72%), dancing (57%), colouring and pretend games (52%), playing with water and reading and looking at books. high weekly participation rates were recorded for attending church (72%) and visiting shopping malls (56%). moderate monthly participation rates were indicated for attending parties (67%), having a haircut (61%), eating out (59%), family gatherings and going to the clinic (52%). table 1: frequency of participation (n = 90). low participation rates (< 50%) were reported for attending weddings (49%), cleaning the yard (48%), washing socks and underwear and cell phone games (44%), setting the table (38%), assisting with preparation of meals (37%), attending an ancestral ceremony and gardening (35%) and attending funerals (19%). caregiver perceptions of activities that are important for learning caregivers were asked to rate the importance of activities for learning by stating if an activity was very important, important or not important. the results displayed in table 2 indicate the mean score obtained, with the maximum being 3 and the minimum 1. activities rated as very important have a mean of 2.5–3.0, activities rated as important have a mean of 2.00–2.49 and not important has a mean score of < 2 (see table 2). table 2: caregiver ratings on the importance of activities for learning. the categories rated as very important for learning include most child routine activities and all early literacy activities, with colouring, drawing and painting (mean = 2.74, sd = 0.43) rated the most important of all activities. other activities in this category include having a conversation (mean = 2.68, sd = 0.46), reading or looking at books (mean = 2.65, sd = 0.47), listening to stories (mean = 2.62, sd = 0.51), cutting and pasting (mean = 2.61, sd = 0.51) and telling stories (mean = 2.53, sd = 0.50). spiritual activities rated as very important consisted of attending church (mean = 2.74, sd = 0.45) and praying (mean = 2.66, sd = 0.47). all activities in the entertainment, chores and family category were rated as important for learning. most play activities except for playing with water and playing with sand were rated as important for learning. two activities from the play category, namely playing with water and playing with sand, were rated as not important for learning. caregivers were also requested to state what they viewed as the main purpose of an activity according to the following categories: fun, work, socialisation, care, educational, exercise, spiritual and other. the percentage was calculated for each category (see table 3). table 3: caregivers perceptions about the purpose of activities (n = 90). results show that most activities from the play and entertainment categories were perceived as fun, while family activities were considered to serve the purpose of socialisation. only four activities were perceived care, as these were from the child routine and community categories. activities identified as educational were mainly from the early literacy and child routine categories. no play activities were highly rated as educational. all activities in the spiritual activity category were considered as having a spiritual purpose. an insignificant percentage of activities were seen as work or being done for the purpose of exercise. open-ended questions the first open-ended question aimed at determining if there were any activities that the children participated in which were not included in the questionnaire. of the participants, 54% did not add any further activities and 24% added play activities which included soccer, wrestling and basketball. the second open-ended question explored what participants considered as important lessons that children should learn from home. fifty per cent of participants identified morals and values as important lessons, 48% identified self-care and hygiene while only 22% stated that educational and literacy activities were important lessons from home. the third open-ended question surveyed participants’ perceptions on what activities the child enjoyed most at home. of the participants, 80% stated that children enjoyed playing, 58% listed entertainment and social activities and 56% stated that children enjoyed singing and dancing. the forth open-ended question required the respondents to share their perceptions on how children learnt, from which four themes were identified. fifty-three per cent of participants stated that children learnt best by participating in activities, 27% stated through spending time with family, 19% stated by being at a crèche and 12% stated through observation. discussion families provide a rich cultural context in which children learn and develop (carpenter 2000). gaining insight into children’s activity settings within the family context is important as families prefer intervention approaches that can easily be incorporated into their daily lives (sheldon & rush 2001) and are congruent with their beliefs and practices. the discussion will focus on the frequency of participation in activities within the eight categories identified earlier as well as how these activities provide an opportunity for learning within the family context. child routine activities, which are mainly essential for daily care, have the highest weekly participation rates and were rated by participants as very important for learning (see table 2). this is consistent with the literature, as dunst, meter and hamby (2001) suggest that the repetitiveness and frequency of occurrence of routine activities provide children with an opportunity to learn and practise new skills within context. the importance of self-care and hygiene was stated as an important lesson from home and seen by most participants as having an educational purpose. these activities also allow children to gain insight into family culture. larson and colleagues explain that mealtime is seen as a vehicle of culture because ‘through mealtime activities and conversation, family members often enact and reaffirm cultural meanings and create new meaning’ (larson, branscomb & wiley 2006:3). jarret, bahar and kersh (2014) showed that low-income african american caregivers showed that they valued family mealtimes and acknowledged the benefits for family life. various studies have shown the benefits of family mealtimes; this activity provides an opportunity for children to learn new words in context (beals 1997), for parents to listen to children talk about their daily lives (fulkerson et al. 2010) and has also been associated with enhancing family cohesion and contributing to positive developmental outcomes. a study conducted by de grace et al. (2016) showed the benefits of improved social and family outcomes for children with special therapeutic and behavioural needs. the positive benefits of family mealtimes highlight the need for early childhood interventionists to look at strategies to increase the participation of children with disabilities in this key family activity. the role of play in child development has historically been applied by looking at it through the lens of western cultures. according to roopnarine and davidson (2015:231), play is ‘culturally situated, and mothers and fathers support play in multiple ways across cultures and time’ this depends on how the community is structured, how play is defined and the kind of significance attributed to play by the community (göncü et al. 1999). children in this study most frequently engage in running, jumping and chasing, playing with toys and pretend games. participants viewed most play activities as having a fun purpose for children. these results correlate with a study of 127 families across 28 developing countries which found that taking children outdoors and play were the most predominant activities that children were involved in (bornstein & putnick 2012). pretend play themes are often linked to culture (nielsen, cucchiaro & mohamedally 2012) as different cultural groups may engage in pretend play for different purposes and play themes may vary according to children’s settings (göncü et al. 1999). participants in the focus groups that were part of the preparatory phase of this study stated that children liked pretending to be a mother by tying a doll on their backs, or being a taxi driver or a teacher. these are the roles that children are regularly exposed to in their daily settings. furth (1996) showed how cultural practices link to pretend play in a township in durban, south africa, where children were pretending to slaughter a cow which is a ‘real-world’ activity that is transferred into children’s pretend world (göncü et al. 1999). results indicate that children frequently participate in water play which is seen as having a fun purpose, and was rated as not important for learning. caregiver views on water play may be related to the fact that water is considered an expensive commodity in south africa. water is free up to 6000 l per household and usage is monitored by pre-pay water metres (ruiters 2007). this resource is also shared by large families and sometimes by more than one family and is therefore unlikely to be used in play activities. the lower frequency of play with sand could be that most families do not keep gardens because it is expensive to maintain because of the cost of water and that access to sand may be limited because of lack of space (balton 2009). early interventionists need to explore alternate activities within the family context that can provide children with alternate sensory experiences that sand and water play would expose them to. this could include activities such as assisting with washing vegetables for cooking, helping to measure and mix ingredients during baking and making a fruit salad to explore different textures. colouring, drawing and pasting was rated as the most important activity for learning; this is an interesting ranking as it was seen as more important than reading or looking at books and telling stories. this perception may be based on the nature of activities that children take home from school or that colouring and drawing may not require adult supervision. children engage in conversation on a daily basis, and the topics of these conversations include what they did at school, details of their play with friends and discussions of what they watched on television (balton 2009). telling stories occurs less frequently than listening to stories, which has been identified as a means for family history to be shared with young children, thus providing an avenue for values to be imparted (sameroff & fiese 2000). participants in the focus group phase of this study stated that grandmothers often told children stories about their past to teach children lessons and for them to learn about their family’s history (balton 2009). according to ouduaran (2013), in african culture, grandmothers often teach younger generations about african wisdom and culture through storytelling. children’s participation in entertainment activities is important for literacy development as it increases children’s ability to shape and understand the available meanings in any number of expressive systems including the media, the arts and popular culture (dills 2007; eisner 1998). children’s high participation rate for watching television suggests that this activity plays a significant role in their daily experiences. results also showed that 70% of the participants perceive watching television as having an educational purpose. children are allowed to watch television because it is believed to improve their english as well as their concentration, and that it is much safer than playing outdoors (balton 2009). this sentiment on safety was echoed by jordan (2005) who interviewed 42 families who live in high-crime areas, where watching television was seen as a safe and relatively inexpensive way of keeping young children occupied. burdette and whitaker (2005) also found in a sample of 20 large cities in in the united states (us) that mothers’ perceptions of neighbourhood safety impacted on children’s viewing time. their findings showed that children who lived in neighbourhoods that were perceived as unsafe watched more television. children’s high participation in singing, dancing and listening to music could be ascribed to the fact that music and music making is an inherent part of south african culture which assists in the transmission of its cultural heritage (woodward 2007). these activities, especially music, are highly accessible in daily life in varied settings (getz et al. 2011). participants viewed singing and listening to music as fun and educational; one of the participants in the focus group stated that he got his child to sing the national anthem to learn about his country (balton 2009). this is important as researchers in the field of early literacy have realised that promoting literacy at home no longer means recreating academic settings within the home but rather taking advantage of opportunities that arise in daily life to help children’s transition towards literacy (cutspec 2006). interventionists need to take cognisance of these activities as potential avenues for facilitating early literacy, because a high number of children frequently engage in them and because participants identified the educational worth of these activities. religion and spirituality play an important role in children’s lives and are vital to family relationships (bartowski, xu & levin 2008) and in african traditional practice, religion is integral to people’s cultural background (van rensburg et al. 2013). very high daily participation rates for praying and attending church weekly are shown in table 2. participants in the focus groups reported that children attend church to learn about their religion to become good christians, to learn how to pray and to be thankful to god for what they have (balton 2009). religious activity is also reported to increase children’s resilience and provide a sense of coherence within the family (bartowski et al. 2008; mercer 2006; werner 2000). most participants identified morals and values as important lessons from home, which ties in with the high participation rate for spiritual activities. community life also provides children with a range of experiences in the contexts of family outings, community celebrations and other community activities (dunst 2001). in recent years, visiting shopping malls has rapidly become an important and valuable ‘cultural’ form which is popularly seen as a mixture of convenience and leisure (murray 1997). the accessibility of shopping malls to residents of soweto has increased over the past 5 years, with two major malls built in 2005 and another three in 2007 (mazibuko 2007). visits to shopping malls are linked to participation in other activities like playing arcade games and eating out. participants in the focus groups stated that they prefer to take children to the shopping malls because they were safer than other spaces like community parks. the high participation rate for visiting shopping malls highlights the lack of safe spaces for children to play in communities. the activity that most children participate in at least once a month is going to the ‘spaza shop’, which is a home-based enterprise often within walking distance of children’s homes (ligthelm 2005). this errand is reported to provide children with opportunities to learn about the environment, the dynamics of interacting with others and offers the opportunity to practise being helpful and responsible, which are important lessons in african culture (nsamenang 1992). the lower participation levels for being carried on the back were attributed to the age of children in this study. the reasons provided by participants for children’s lower participation levels for riding a bike or scooter and playing with blocks are ascribed to the lack of money to purchase these toys (balton 2009). children’s participation in playing arcade games, which are relatively expensive, highlights caregiver’s concerns related to safety as these games are played in a contained area under adult supervision. the findings of studies conducted in australia by carver, timperio and crawford (2008) and veitch et al. (2006) and in south africa by kruger and chawla (2005) concur with this statement. their research concluded that parents’ issues about the safety of their children playing in places other than their own yard were influenced by concerns surrounding strangers, gangs and road traffic. the physical settings have also influenced children’s participation in ‘mokuku’ (hide-and-seek) as caregivers stated concerns about safety and lack of space. many shopping malls have been built in soweto over the past 5 years; this has increased the availability of fast food outlets with most children eating out at least once a month. the mean score for taxi rides also indicates that most children travel by taxi once a month, which relates to the results which show that activities away from home and which require more money occur less frequently. other activities which children participate in at least once a month include attending parties and family gatherings. while children’s participation in chores in parts of africa have historically been an expected activity (nsamenang 1992), results showed that the only chore activity that most children participate in is washing socks and underwear. children’s participation in chores and work-related activities can be attributed to a number of factors and identifying a causal relationship is not possible for this complex matter. poverty, social and economic factors, children’s rights, family size, female-headed households and whether it is an urban or rural community are some of the factors identified, which have impact on children’s participation in work-related activities (cummings 2016). the reason for children’s low participation in chores could be attributed to the young age group investigated in this study, the larger family structure where other family members take on the responsibilities or that children spend a large proportion of their time at crèche. children hardly ever participated in chores like cleaning the yard and family activities such as visiting the family or traditional home. while participation levels were high for religious activity, it was much lower for traditional practices such as ancestral ceremonies and attendance at funerals. this could be because key traditional practices have been replaced by modern ones (evans, matola & nyeko 2008). less frequent visits are also conducted to the family or traditional home with participants stating that children visit at least once a year. this is understandable within the context of urbanisation, often implying that the traditional home is far from where families live and visiting would therefore incur expenses that the family may not be able to afford. children’s visits to the park were reported as less frequent, which could be because of the fear of exposure to drugs, violence, vandalism and parents having less time available because of various stressors (milteer & ginberg 2012). participants in the focus group stage of the study stated that they did not consider parks as safe for children as they were not clean and often had broken glass on the field and that there were possible criminal and drug-related activities taking place at these places (balton 2009). conclusion participants in this study believe that children learn most by participating in activities and by observing others. the results show that children are exposed to different types of activities and experiences depending on the beliefs, values, practices and resources of families. this was highlighted by children’s high participation in care, play and spiritual activities as well as lower participation in certain chores and educational activities like cutting and pasting. participation in activities is also determined by access to resources (water and sand play and eating out), the lack of safety and security, which has possibly affected activities like increased visits to shopping malls and decreased visits to parks. interventionists need to develop an understanding of family activities and integrate developmental goals within these. this study has assisted in building on the ‘indigenous’ knowledge base of children and families in an african context, thus heeding the call to increase the knowledge base ‘about africa for africa’ (pence et al. 2008). the use of activity settings is closely aligned to the strengths-based perspective of family-centred practice. the findings have increased the knowledge base regarding children within their natural environments, with these environments being rich in opportunities for learning; furthermore, the findings also contribute to (pence & marfo 2008): … development of a science of child development that is not narrowly constructed on the lives of a small minority of the world’s children, but rather a science that opens up to other populations and other possibilities. (p. 85) this study was conducted in a south african urban setting and cannot necessarily be generalised to other african contexts. acknowledgements the author would like to thank prof. shakila dada from the university of pretoria centre for alternate and augmentative communication for encouraging her to write this article and supporting her through the process. this article is based on the first author’s unpublished thesis titled ‘family-based activity settings of typically developing three-to-five-year old children in a low-income african context’ currently uploaded onto an academic repository available at https://repository.up.ac.za/handle/2263/28788. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.b. was the main author of this article. k.u. and e.a. were the research supervisors of s.b. funding information funding for this study was provided 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handbook of early childhood intervention, pp. 115–134, cambridge university press, cambridge. woodward, s.c., 2007, ‘nation building – one child at a time: early childhood music education in south africa’, arts education policy review 109(2), 33–42. https://doi.org/10.3200/aepr.109.2.33-42 appendix 1: interview schedule. abstract introduction methods results discussion conclusion acknowledgements references about the author(s) karen l. rispin department of biology, letourneau university, united states kara huff school of rehabilitation therapy, letourneau university, united states joy wee school of rehabilitation therapy, queen’s university, canada citation rispin, k.l., huff, k. & wee, j., 2017, ‘test–retest reliability and construct validity of the aspects of wheelchair mobility test as a measure of the mobility of wheelchair users’, african journal of disability 6(0), a331. https://doi.org/10.4102/ajod.v6i0.331 original research test–retest reliability and construct validity of the aspects of wheelchair mobility test as a measure of the mobility of wheelchair users karen l. rispin, kara huff, joy wee received: 21 oct. 2016; accepted: 16 may 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the aspects of wheelchair mobility test (awmt) was developed for use in a repeated measures format to provide comparative effectiveness data on mobility facilitated by different wheelchair types. it has been used in preliminary studies to compare the mobility of wheelchairs designed for low-resource areas and is intended to be simple and flexible enough so as to be used in low-technology settings. however, to reliably compare the impact of different types of wheelchairs on the mobility of users, a measure must first be a reliable and valid measure of mobility. methods: this study investigated the test–retest reliability and concurrent validity for the awmt 2.0 as a measure of mobility. for reliability testing, participants in a low-resource setting completed the tests twice in their own wheelchairs at least one week apart. for concurrent validity, participants also completed the wheelchair skills test questionnaire (wst-q), a related but not identical validated assessment tool. results: concurrent validity was indicated by a significant positive correlation with an r value of 0.7 between the wst-q capacity score and the awmt 2.0 score. test–retest reliability was confirmed by an intraclass correlation coefficient greater than 0.7 between the two trials. conclusion: results support the preliminary reliability and validity of the awmt 2.0, supporting its effectiveness in comparing the mobility provided by different wheelchair types. this information can be used to enable effective use of limited funds for wheelchair selection at individual and organisational scales. introduction comparative effectiveness studies on the mobility facilitated by wheelchairs designed for use in low-resource areas are lacking (harniss, samant raja & matter 2015; matter et al. 2017; pearlman et al. 2008). the aspects of wheelchair mobility test (awmt) was developed as a physical performance measure to provide comparative effectiveness data on wheelchairs designed for low-resource settings (rispin & wee 2013, 2015). the awmt, which is described in a companion paper in this journal, is intended to be used in a repeated measures format to assess the impact of wheelchair type on mobility in commonly encountered rolling environments (rispin & wee 2013, 2015). in order to be useful as a measure of the impact on mobility of different wheelchair types, the awmt must first be a valid and reliable measure of a wheelchair user’s mobility (dijkers et al. 2002; jerosch-herold 2005; kottner et al. 2011). results can then be used with confidence to enable effective use of limited funds (dijkers, murphy & krellman 2012; revicki et al. 2008; speight & barendse 2010). test–retest reliability is the variation in measurements taken by a single instrument on the same item, under the same conditions, after an interval of time (dijkers et al. 2002; kottner et al. 2011). a measure is considered reliable when variation between the two iterations meets an acceptance criterion, often set at an intraclass correlation (icc) value greater than or equal to 0.7 (dijkers et al. 2002; kottner et al. 2011). concurrent validity confirms that an assessment measures its target construct as indicated by significant correlation with a similar but not identical validated outcomes measure (dijkers et al. 2002). as described in the accompanying article (rispin, hamm & wee, 2017), the awmt uses measured tracks on four rolling environments: rough, smooth, tight spaces and curbs. these are commonly encountered in low-resource settings and were thought likely to discriminate differences because of wheelchair design. although exercise heart rate was monitored, it was not found as effective as distance travelled during the timed test in differentiating between wheelchair types in each rolling environment (rispin & wee 2013, 2015). in earlier studies using awmt 1.0, the duration of tests differed. on rough and smooth tracks, 6-min durations similar to the 6-min timed walk test were used (crapo et al. 2002; rispin & wee 2015). on curb and tight tracks, 3-min durations were used as these rolling environments were thought to be too difficult or awkward for 6-min tests (rispin & wee 2015). the awmt 1.0 3-min duration enabled discrimination between wheelchair types in past studies on curb and tight tracks (rispin & wee 2015). however, the shorter time period may have reduced sensitivity to change (kosak & smith 2005). the purpose of this study was to investigate test–retest reliability and construct validity of the updated awmt 2.0 as a measure of the mobility of wheelchair users. we hypothesised that test–retest reliability would be confirmed by icc above 0.7. construct validity would be confirmed by significant correlation with a related validated measure. we also hypothesised that the elimination of exercise heart rate and making all timed tests a uniform 4 min length would simplify the awmt 2.0. methods study site this study was conducted in partnership with an organisation providing rehabilitation at a school for students with disabilities in a low-resource area. in their daily routine as they move between dorms, classrooms and dining halls, wheelchair users regularly traverse paved and unpaved areas, as well as curbs and tight spaces. participants participants were a convenience sample consisting of all wheelchair using secondary school students who chose to participate in the study. participation in the study was voluntary, and participants could withdraw at any time or choose not to complete any task. the study was conducted using the english language. all participants had completed an english proficiency exam as part of the admissions process to the secondary school, and english was the language of schooling. however, most of the participants spoke several languages, and the language used in casual conversation was a patois of several local languages mixed with some english. protocol measured tracks incorporating rough, smooth, curbs and tight spaces rolling environments were established and the length of each track was measured using a survey wheel. the 60 m rough track was on an earth and gravel road. the best approximation to a smooth surface found was the somewhat uneven cement floor of the school dining hall and a 40 m track was set up around the periphery of the room. the curb was a wooden raised area 1.5 m wide and 7 cm tall on an outdoor cement surface, and the 11 m curb track traversed the raised area twice each loop. if a participant was unable or chose not to ascend the curb, no distance was measured. for the tight spaces track, four chairs were set in a row 1 m apart on an indoor cement floor. the 12 m track was a figure eight around the middle two of the four chairs. there was no time penalty for displacing a chair, but participants had been asked to avoid the chairs and seemed to be trying to do so. using their own wheelchairs, wheelchair users participated twice with a one-week intervening period. wheelchair settings were not altered and wheelchairs were not repaired between iterations. participants were invited to roll at a comfortable pace for 4 min on each track. they were reminded that they were free to withdraw from any test or stop and rest if needed during the tests. instructions were similar to those established for the long validated american thoracic association timed walk test (crapo et al. 2002; graham et al. 2008). after completing each track, participants completed a visual analogue scale question on the ease or difficulty of rolling on that track. the question also included an opportunity to provide an explanatory comment. the question format is described in more detail in the accompanying paper and was like that used in the lower limb function questionnaire and the wheelchair components questionnaire (funk et al. 2017; rispin et al. 2017). although heart rate had been monitored using research-grade heart rate monitors in earlier awmt 1.0 studies, this was not performed in the updated awmt 2.0 because heart rate had not consistently differentiated between wheelchair types. however, non-exercise heart rate was recorded before testing was initiated. participants rested quietly for 5 min, and at the end of that time their brachial pulse was taken for 30 s. each subsequent test was started only when a participant’s heart rate had returned to his or her non-exercise heart rate and the participant indicated that he or she was ready to begin. participants were pushed between tracks to avoid fatigue. a low discrepancy shifting pattern of rolling environments was used to avoid skewing of results by the order of testing. each person used the same order of testing in each iteration, but the order of tracks varied between participants so the track that was completed first, second and so on differed among participants. the wheelchair skills test questionnaire (wst-q version 4.2) was chosen as a related but not identical construct for the purpose of concurrent validity testing (mountain, kirby & smith 2004). the wst-q is a questionnaire version of the wheelchair skills test, a physical performance measure intended to assess a wheelchair user’s skill level and capacity. the wst-q asks a wheelchair user to assess their capacity and frequency of use of 32 skills and to indicate training goals. for the capacity score, participants rate their capacity on a scale of 0 to 2, with 0 being unable, 1 being able to complete, but not as well as the wheelchair user would like and 2 being able to do the skill safely and without difficulty. administration of the wst-q was done in a group setting in the school dining hall. instructions were read aloud. while participants completed the wst-q, researchers and facilitators circled the room to answer vocabulary questions because some of the terms in the wst-q were unfamiliar to some participants. analysis the minitab statistical analysis program was used for data analysis. data sets were tested for normality with the anderson–darling test. for concurrent validity, the mean distance travelled and the mean visual analogue score for both iterations for each participant were correlated with that of the participant’s wst-q capacity score. for test–retest reliability, icc was calculated for the two iterations for each participant’s total distance travelled on all tracks and mean visual analogue scale scores. ibm statistical package for the social science was used for icc. although we collected quantitative comments as is normal for the awmt 2.0 and wst-q, this study is focused on quantitative data which can be evaluated using icc and correlation analysis. ethical considerations the study protocol was approved by the authors’ universities and partner organisations. participants over 18 years of age provided informed written consent. those under 18 years of age provided informed written assent and their guardians provided informed written consent. results participants there were a total of 64 wheelchair users present at the secondary school. of these, 50 users chose to participate (average age: 17.3 sd ± 1.75; gender: 27 male and 23 female). see table 1 for information provided by participants on their wheelchair type and diagnoses. all participants completed the smooth track, 49 completed the tight track, 46 completed the rough track and 27 completed the curb track. table 1a: types of wheelchairs as provided by the host organisation. table 1b: diagnosis as provided by the host organisation. statistical results the icc result for each participant’s mean visual analogue score for all tracks for test and retest was 0.801 with a 95% confidence interval of 0.731–0.853. the icc result for mean total distance travelled on all tracks for test and retest was 0.966 with a 95% confidence interval of 0.954–0.975. the total distance travelled correlated positively and significantly with the wst-q capacity score with a pearson’s correlation of 0.7 (p < 0.001). the mean visual analogue score response of participants also correlated positively and significantly with their wst-q capacity score with a pearson’s correlation of 0.49 (p < 0.001). discussion the purpose of this study was to investigate the reliability and validity of the awmt 2.0 as a physical performance measure of mobility. test–retest icc results well above 0.7 confirm reliability for distance travelled and visual analogue score responses. significant correlations with the wst-q capacity scores confirm validity. the wst-q is a validated physical performance measure. if the awmt 2.0 is measuring physical performance aspects of mobility, one would expect significant positive correlation between the two measures. this was the case, and concurrent validity of the awmt 2.0 was confirmed by positive and significant correlation between the total wst-q capacity score and awmt 2.0 distance travelled on all tracks. this was also the case for the correlation of awmt 2.0 mean visual analogue score and wst-q capacity score. in fact, these positive correlations emphasise the validity of both measures. one might ask why the awmt 2.0 is needed if the wst-q is a validated measure. the wst-q is designed, as the name describes, to test the skill level of an individual wheelchair user. as such, the wst-q is not primarily designed for comparative effectiveness studies on the impact on mobility of different wheelchair types. if a very strong wheelchair user can roll on rough ground, it is likely that he or she could do that in most wheelchair types, and the 0–2 categorical rating scale might not pick up a slower velocity or a greater difficulty in one wheelchair type as compared to another. because of the categorical nature of wst-q questionnaire data for each question, analysis of variance (anova) could not be used to compare the impact of different wheelchair designs on capacity for each skill. if all 32 questions of the wst-q were to be used, there would be greater discriminative power. however, this would be difficult to do in a repeated measures study because each participant would need to complete or attempt to complete many skills in each wheelchair. this would be very time-consuming and physically wearing. in contrast, because the data are continuous, anova can be applied to awmt data with rolling environments and wheelchair types acting as factors (see the accompanying paper). the curb and rough tracks tests were included as part of the awmt partly to prevent a ceiling effect; therefore, lack of completion on those tests is not unexpected. however, in earlier comparative studies, participants were selected for ability to self-propel without stress on rough surfaces (rispin & wee 2013, 2015). this was done with an attempt to enable more nearly complete data sets on all surfaces for greater statistical power for the anova comparisons across tracks and wheelchair types. in this study, because we were not seeking to do a comparative effectiveness study and because wide variation is helpful in reliability and concurrent validity studies, all wheelchair users at the secondary school were invited to participate. all participants could propel on a smooth surface and most could propel on a rough surface and in tight spaces. completion rates were somewhat lower on rough track and much lower on the curb track. although all participants completed the smooth track, some rolled very slowly. those who rolled very slowly even on the smooth track were most often those who did not normally propel themselves without help as they travelled around campus. many had a friend, usually another student in the same courses, who assisted them as they rolled between classes, to the dorm and dining hall. in more developed areas, those who need regular assistance would likely have received a power wheelchair, but power wheelchairs are not yet broadly available in low-resource areas (pearlman et al. 2009). therefore, the mobility a manual wheelchair affords to a user or assistant team is also of interest. work on the validation of a similar set of tests for wheelchair assistants pushing wheelchairs is also underway (sasaki & rispin 2016). our study population was not typical of all wheelchair users. many wheelchair users are older people who have acquired disabilities. with a mean age of 17 years, participants in this study were younger, and there had been a strong selection process involved in their successful admittance into secondary school. life for those with disabilities in low-resource areas is challenging (borg, lindström & larsson 2011; harniss et al. 2015). these teens and young adults were exceptional people with exceptional support networks. they had done well in primary school, passed the rigorous exam for admission to secondary school and were attending school. this required a support network for the payment of school fees, and to enable travel to and from boarding school. in an environment where power wheelchairs and devices to augment communications skills are not available, anyone who is unable to self-propel or has difficulty in writing or speaking is at a very great disadvantage. it is not surprising that our participants could write, speak and self-propel. however, this is likely not the case with the broader global population of wheelchair users. in this study, unlike earlier studies, all tracks were of 4-min duration. on the rough and smooth tracks, the removal of 2 min seemed to reduce stress for the participants. on the curb and tight tracks, the addition of 1 min did not seem to add much stress for the participants. because all tests were for a 4-min duration, distance travelled could be directly compared across tracks in future comparative studies. the modification of the awmt 2.0 to eliminate the need of using research-grade heart rate monitors simplified the protocol in several ways. it removed the need to check batteries, fit and calibrate the monitors, download data and calculate mean exercise heart rate. this simpler protocol should increase the ease of use of the awmt 2.0 in low-resource areas. in large comparative effectiveness studies, the awmt 2.0 can provide data on wheelchair types as is described in the accompanying article. because the awmt 2.0 is designed to assess the impact of different wheelchair types on the mobility of the same user, it could also be used to assess change across time. for example, the awmt 2.0 could be used to document the impact on users’ mobility before and after rehabilitation treatments. in a clinical setting in which therapists work with one client at a time, awmt 2.0 could be used to enable objective comparative input on wheelchair types for individual clients. wheelchair users could have the option of trying out several wheelchairs by using the awmt 2.0 to test the mobility provided to them by each wheelchair type. results of the awmt could be used as one component taken into account in the selection of a wheelchair type for a user. in many locations, letters of medical necessity, or some sort of equivalent, for provision are needed and objective evidence would reinforce the validity of a request (greer, brasure & wilt 2012). if thresholds were selected for different rolling environments, awmt 2.0 results could provide objective evidence of the need for a powered wheelchair. for example, a low distance travelled while rolling forward for 4 min on a rough surface track could indicate the need for a power chair for use outdoors. study limitations and future work there were some differences between the test and retest iterations. all tracks were completed at outdoor ambient temperatures, which varied over time. the rough surface track was on an unpaved road. over the time period of testing, there were several rainy days. although testing was delayed until the road had dried, road texture was different on a damp day after a rain than it was after several days of dry weather. the intervals between test and retest were not perfectly uniform because waiting on the weather sometimes delayed testing. we sought to minimise disruption to participants’ schedules; therefore, the time of day testing was conducted was not always the same for each participant in the initial and final iteration. good test–retest reliability for distance travelled and participant response visual analogue scores indicates that even on slightly varying surfaces, differing times of day and temperatures, the awmt 2.0 provided a reliable measurement of mobility. because the awmt has been used with tracks set up on rough, smooth, curb and tight environments available on location, the protocol has a high innate variability. the smooth and tight environments could be set up identically at most locations. for the other two surfaces, the study would be generally repeatable if instead of locally available areas, standardised curb and rough surfaces units could be built. for example, for the rough surface, standardised modular rough surface could be built locally (duvall et al. 2013; sasaki & rispin 2016). this is planned for an upcoming study in kenya. as described above, the population involved in this study was not representative of the global population of wheelchair users in low-resource settings. therefore, further studies are also needed with other populations. the accompanying study on discriminatory validity had test durations of 3 and 6 min rather than the updated 4 min and included the use of heart rate monitors. studies are also planned to confirm the discriminatory validity of the awmt 2.0. visual analogue scale format was chosen for the awmt response question because it produced continuous data, which offers higher discriminatory power than categorical format scales such as the likert scale (philip 1990). however, the need to measure and record visual analogue scale results adds a time requirement that could be difficult to sustain in a clinical setting (reips & funke 2008). the visual analogue scale format is now becoming available in digital format (reips & funke 2008). work is underway to provide awmt 2.0 visual analogue scale questions in a small downloadable program. globally, computers are often available in clinical settings. a digital version of the visual analogue scale questions would reduce the load on busy clinicians or researchers who wish to use the awmt 2.0. conclusion these findings indicate that the awmt 2.0 is a reliable and valid measure of a wheelchair user’s mobility. this confirms the soundness of comparative effectiveness studies conducted using the awmt 2.0 for similar populations. as a clinical tool, the awmt 2.0 could enable wheelchair fitting by allowing direct objective comparisons of the mobility provided by wheelchairs and configurations. in larger studies comparing cadres of wheelchairs of two or more types, the awmt 2.0 can provide comparative effectiveness data to manufacturers, clinics and stakeholders. because this study was conducted with a population of adolescent participants in one low-resource area, further studies are needed for other populations and in other locations. acknowledgements the authors would like to thank their universities, their partner organisations at the study site, and the staff and students at the boarding school for their contributions to this investigation. funding for travel and research was provided through private fundraising by individual researchers. the authors would like to thank those who personally donated for 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abstract introduction research methods and design results discussion conclusion acknowledgements references appendix 1: focus group question guide about the author(s) lizahn g. cloete department of interdisciplinary health sciences, stellenbosch university, stellenbosch, south africa evans o. obaigwa department of interdisciplinary health sciences, stellenbosch university, stellenbosch, south africa citation cloete, l.g. & obaigwa, e.o., 2019, ‘lived experiences of caregivers of children with autism spectrum disorder in kenya’, african journal of disability 8(0), a435. https://doi.org/10.4102/ajod.v8i0.435 original research lived experiences of caregivers of children with autism spectrum disorder in kenya lizahn g. cloete, evans o. obaigwa received: 13 sept. 2017; accepted: 27 sept. 2018; published: 25 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: autism spectrum disorder (asd) is a global public health concern. in african countries such as kenya, there is a greater need for establishing support services for developmental disorders such as asd. the emotional, social and economic burden of asd on caregivers is unknown because of a number of challenges. citizens of kenya have a unique view of disability and inclusion. objectives: to explore the perspectives of caregivers who are responsible for caring for both family and children living with asd and to highlight the needs of children with asd as well as the needs of their caregivers. method: a qualitative, descriptive phenomenological study utilising focus group discussions (fgds) was conducted. verbatim transcription was used. qsr n ’vivo 10 was used to organise and analyse the data. content analysis was used to identify important ideas and concepts. results: one theme, namely ‘the burden of caring for children with asd’, was identified. children with asd and their caregivers experience isolation and stigmatisation. conclusion: occupational therapists in kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with asd and their families. responsive and context-appropriate occupational therapy interventions may begin to address service barriers. keywords: autism spectrum disorder; children; needs of caregivers; context-appropriate services. introduction autism spectrum disorder (asd) is a disorder associated with individuals with autism, asperger’s disorder or a developmental disorder not otherwise specified (american psychiatric association 2013; world health organization 2013a). the onset of this neurodevelopmental disorder occurs in childhood, and it can persist into adulthood. characteristic symptoms include impaired social communication and interaction, as well as restricted, stereotyped behaviour, activities and interests (american psychiatric association 2013; world health organization 2013a). since the discovery of asd, it has been difficult to establish its cause; however, studies have attempted to connect the aetiology of asd with heredity (betancur 2011), environmental factors (landrigan 2010), advanced age in both parents (ronald & hoekstra 2011) and, most disputed of all, vaccines (gona 2016). however, alternative paradigms such as neurodiversity view asd as a variation in the neurology of individuals and part of the identity of such individuals (jaarsma 2012). the discrepancies in ascertaining the exact information on the causes of asd, especially among africans, hamper the efforts required to address the asd-related needs and service provision of kenyans. consequently, individuals with asd and their families in kenya have poor quality of life. in 2008, the member states of the united nations (un) emphasised the need to take asd seriously as a public health concern, and in 2012, the un general assembly agreed to adopt measures to address the socio-economic needs of children with asd, family members and society. this initiative has been difficult to implement in africa because of the lack of resources, poor advocacy, inadequate collaborative efforts and ineffective strategies (world health organization 2013b). in kenya, as in other developing african nations, developmental disorders such as asd have attracted little attention from the government and other stakeholders regarding establishing support services for individuals with asd (njogu 2009; republic of kenya 2009). bayat (2014) suggests that there is a general lack of literature on the needs of african children with disabilities or the views of africans towards disabilities. service provision and resource allocation in english-speaking developed countries is also much more advanced than those in the global south. these discrepancies have hampered efforts to address asd-related needs and service provision in countries like kenya (njogu 2009; republic of kenya 2009). there is also a need to develop advanced diagnostic and reporting systems before meaningful data on the rising prevalence of asd (american psychiatric association 2013; matson & kozlowski 2011) in the region could be captured. to ensure the development of appropriate networks for service delivery to children with asd, more information is required on the needs as expressed by caregivers of children with asd. this study therefore posed the following research question: what are the lived everyday experiences of the caregivers of children with asd at kenyatta national hospital? kenya is a country of several tribes, who have different cultural beliefs and practices. cultural and spiritual beliefs strongly influence the health-related experiences of people in kenya. similarly, cultural and spiritual beliefs often inform the beliefs and attitudes of the caregivers and community members in a manner that negatively influences caregiving practices of children with asd. furthermore, limited knowledge about the aetiology of asd may restrict the type and nature of research data that could be collected, which, in turn, may hamper the development of and access to support services. the kenyan government and other stakeholders have not yet taken initiatives regarding establishing prevalence, the impact of asd, and allocating resources for the research and training of professionals to support children with asd and their families. according to kenya national bureau statistics (2015), kenya has a population of about 40 million, and the united nations children’s fund (unicef) estimates that 1% of children in kenya live with disabilities, including those with asd, which translates to about 400 000 children with disabilities in kenya. the kenya occupational therapists association (kota) (n.d.) indicates that there are 900 occupational therapists (ots), which is below the who threshold of about 750 occupational therapists per a population of 1 million people (who rehabilitation 2030 2017). the number of ots in kenya is therefore not enough to address the needs of children with asd and their caregivers. considering the challenges associated with health care provision of children with disabilities, the institutions responsible for providing such care are unprepared at best (seif et al. 2008). within the kenyan health system, ots, as crucial members of the multi-disciplinary team, may contribute to the care, integration and inclusion of children with asd. a holistic approach to address the needs of children with asd would include the provision of information pertaining to asd through caregiver education, research and publication. in addition, advocacy for rights of children to play, socially participate and engage in family routines, independent living and the right to enter into gainful employment (kuhaneck & watling 2015) later in life are equally important. rehabilitation interventions should focus on neurodevelopmental and sensory-motor approaches within occupational therapy rehabilitation to address the characteristic symptoms experienced by children with asd. interventions that focus on meeting developmental milestones may enhance sensory processing and sensory-motor performance towards enabling self-care and participation in play. with adolescents, occupational therapy rehabilitation may focus on social behavioural performance, transition to work and independence in the community (case-smith & arbesman 2008). a combination of the above-mentioned approaches may effectively mobilise resources for inclusion in all areas of life. caregivers of children with asd in africa have a variety of experiences, some of which are different from caregivers who live in countries with more resources like the usa, uk and northern ireland (world health organization 2013a). in a study conducted in the usa, brien (2007) suggests that a diagnosis of autism, as well as the severity of the impairments, can act as external stressors to the caregivers and family. africans mostly view persons with disabilities negatively; for instance, many kenyans believe that illness and disability are the result of ancestral dissatisfaction (gona 2016). the inclusion of children with disability as equal members of society may therefore not be a priority. this view of disability is in contrast with the ubuntu philosophy. jolly (2011) describes ubuntu as the essence of being human. within the ubuntu philosophy, the boundaries between nuclear and extended families are enmeshed. being part of the community offers benefits and requires equal responsibility where each person acknowledges his or her own connectedness with and interdependence on the other. the view of disability as misfortune excludes individuals with disabilities from the benefits of ubuntu that prescribes collective ownership of success and misfortune (wilson & williams 2013). in her ethnographic work conducted with students labelled as being on the autism spectrum, baines (2014) challenged readers to see beyond disability labels by focusing on the unique talents, beliefs and dreams of the individual. jaarsma (2012) argues that to accept these individuals as a special group with specific needs, there should be a reduction of societal misconceptions towards asd. other studies conducted in iran, tanzania and poland have reported that there are also gender differences in terms of how the caregivers experience the impact of taking care of a child with asd. a child with asd presents many emotional, social and economic challenges to the family (bilgin & kucuk 2010; diken 2006; gona 2016; landrigan 2010). caregivers spend a lot of energy balancing the needs of the family and those of the children living with asd (ghanizadeh & alishahi 2009). in addition, ambikile and outwater (2012) reported that mothers as caregivers of children with asd have poorer mental health than the general population. mak and kwok (2010) conducted a study in hong kong and reported that there is ambiguity concerning whether the diagnosis of asd can contribute to caregivers’ stress perceptions. people experiencing ambiguous loss have difficulties in making decisions regarding the care of children with pervasive developmental disorders (ambikile & outwater 2012; brien 2007). mothers generally experience more stress symptoms than fathers do, particularly when they learn about their child’s health condition; and uncertainty regarding how to deal with their child’s behaviours was one of many concerns (ambikile & outwater 2012; brien 2007; dabrowska & pisula 2010; ghanizadeh & alishahi 2009). based on the findings of the un general assembly resolution report, there is a need for the empowerment of health care professionals with adequate knowledge pertaining to the management of asd, caregiver education and other collaborative interventions. similar qualitative studies confirmed that the behaviours associated with asd affect those involved in the care of such children, and that support (including training programmes) from family, government and other organisations helps families deal with these daily challenges (bilgin & kucuk 2010; gona 2016; luther, canham & cureton 2005; republic of kenya 2014; samadi & mcconkey 2011; world health organization 2013b). in the usa, plumb (2011) explored how having a child with asd influences a couple’s lives, and established that despite the extreme demands of caring for such a child, the parents usually achieve resilience and that the child’s condition may even bring the couple together and also that participants’ marital relationships generally survived because of social support as well as professional help. starr and foy (2010) also found that canadian parents perceived their options in terms of general educational issues, and the teacher support provided to their children, as adequate. teachers’ knowledge in managing children with asd behaviours reassured parents that their children were receiving adequate support at school. other studies have shown that these children need long-term care, which interferes with families’ quality of life, in respect of the costs of service provision and special education, and the loss of family income (republic of kenya 2009; ruiz-robledillo et al. 2014; starr & foy 2010; siman-tov & kaniel 2011; world health organization 2013b). in turn, the caregivers of african children with disabilities may be faced with different challenges such as food insecurity (and malnutrition), poverty, political unrest and general beliefs around the causes of the disability. due to these factors, families may experience unique barriers that may keep them from contributing towards the implementation of a care model that could address the social determinants of health as well as the issues related to caring for the child and his or her caregivers. another study in the usa compared two groups of siblings – that is, those with asd and their siblings with no disability. this study found that various factors strengthen relationships between family members, or between the child’s parents. rivers and stoneman (2003) examined similar relationships and recommended family support in such families. in most african countries, children with disabilities are often invisible, mistreated by caregivers and have poor access to health care (bayat 2014). unlike caregivers of children without asd, those of children with asd were utilising health services such as speech therapy, occupational therapy and other special interventions – which were expensive, unavailable and require trained professionals to implement (republic of kenya 2009; ruiz-robledillo et al. 2014; starr & foy 2010; siman-tov & kaniel 2011; world health organization 2013b). although the health care service needs of children with asd may be similar across the world, the availability of resources and the nature of the resources needed by african children may differ starkly from agreed service structures. therefore, the aim of this study sets out to explore how an understanding of the lived experiences of caregivers of children with asd could inform the development of appropriate services in kenya. research methods and design study design cognisant of the emerging theoretical framework of critical autism studies, which combines medical and social approaches to explore disability (davidson & orsini 2013), this study used a qualitative, descriptive, phenomenological study (carpenter & suto 2008; ritchie et al. 2013). participants engaged in four focus group discussions (fgds) for data collection. phenomenology as a qualitative methodology enabled the participants to share their experiences and voice their concerns (liamputtong 2007). the phenomenological approach entails finding the meaning in human experiences, as related by the participants in the situation (carpenter & suto 2008; ritchie et al. 2013). the process allowed the researcher to understand the perspectives of study participants, as recounted by the participants themselves. a phenomenological approach is also suitable for understanding subjective experiences, and understanding what motivates people to behave in a certain manner (carpenter & suto 2008; ritchie et al. 2013). the participants’ stories yielded rich information in kiswahili (the official language spoken by over 90% of the population in kenya). setting the study took place at the occupational therapy clinic, one of the 22 outpatient clinics of kenyatta national hospital. study population and sampling strategy the study population consisted of the caregivers of 300 children with asd who were attending the occupational therapy clinic at the hospital during the period of study between june and july 2015. twenty-four participants were selected with purposeful sampling. although mainly primary caregivers were selected to participate, one mother-in-law, who had taken care of her grandchild with asd before transferring her caregiving role to the biological parents, was selected. her rich accounts of the experience of caring for the child of her daughter and son-in-law contributed to answer the research question in a manner that resonated with caregiving approaches of taking collective responsibility in african cultures. each of the four focus group sessions comprised six caregivers, taking into consideration their different socio-economic backgrounds, cultures and age groups (carpenter & suto 2008; ritchie et al. 2013). participants who were related to each other (e.g. mother and son-in-law) were allocated to different groups. the severity of the child’s condition was not considered during allocation. the inclusion criteria for the study were as follows: participants had to have been an adult, primary caregiver of a child with asd who attended the hospital for the last 3 months before the research commenced and were willing to give informed consent. data collection the four focus group sessions each lasted about 90 min and were conducted in a neutral place every month (carpenter & suto 2008; ritchie et al. 2013), especially structured to ensure confidentiality. predetermined short, open-ended and non-threatening questions (carpenter & suto 2008; ritchie et al. 2013) elicited responses that reflected participants’ beliefs as well as experiences of raising children with asd (onwuegbuzie et al. 2009; ritchie et al. 2013). other questions probed for the accessibility of supportive services for these children and their families (onwuegbuzie et al. 2009; ritchie et al. 2013) (appendix 1). bracketing allowed the researcher throughout the research process to distinguish between practitioner and researcher roles. hand-written notes were transcribed immediately after every focus group discussion (taking approximately 8 h) into clearly typed wording, including all observed non-verbal expression from the participants. individual member-checking sessions of 20 min with all participants confirmed that the captured information reflected the true views of the participants. data collection took 22 h in total. data collection stopped after data saturation was reached (the recurrence of similar information in data sets). video recording enhanced the credibility of the content shared by participants during the discussion. strategies used to obtain the approval of the participants for recording the session included establishing rapport with the participants and assuring them of complete confidentiality (onwuegbuzie et al. 2009; ritchie et al. 2013). informed consent was obtained for taking notes as well as for recording the sessions. data analysis inductive content analysis was performed (carpenter & suto 2008; ritchie et al. 2013). the data were transcribed verbatim before analysis was done. to ensure that the transcription reflected the totality of the discussions and facilitated analysis, transcription conventions such as the use of symbols and word emphasis were used. to ensure that the transcribed data were accurate, the recorded discussions were watched and listened to, and cross-checked with the transcripts. during cross-checking, any non-verbal behaviour captured in the recording was added to the field notes. the researcher read the transcribed data to gain familiarity with the text. the focus group question guide (appendix 1) was instrumental in enabling the researcher to organise and summarise the data. ideas and concepts were identified. the n’vivo software package was used to organise and analyse the field notes and video files derived from the focus group discussion sessions (ritchie et al. 2013). meaningful units were coded. codes were clustered into subcategories, which were then grouped into categories. the categories and subcategories were labelled with descriptive phrases (table 1). the researcher noted important threads and ideas that recurred. paradoxes and conflicting ideas were also explored. similar opinions were merged (onwuegbuzie et al. 2009; ritchie et al. 2013). to ensure the rigour of the process, a qualitative researcher not involved in the research was consulted to create an audit trail (carpenter & suto 2008; ritchie et al. 2013). finally, the researcher interpreted the findings. connections between subcategories and categories were established and reduced into one theme. table 1: the burden of caring for children. theme, category, subcategories, and codes. ethical considerations the kenyatta national hospital – university of nairobi erc – as well as the university of stellenbosch health research ethics committee (s14/10/260) approved the study. all the principles of ethics in research were observed during the study, including provision of information concerning the study, and obtaining consent in a language well understood by caregivers before and during focus group discussions with caregivers (onwuegbuzie et al. 2009; ritchie et al. 2013). the researchers used pseudonyms to protect the privacy of all participants. the researcher ensured the study information was accurate by safeguarding the rigour and trustworthiness of the study through the inclusion of credibility, transferability, dependability, confirmability, triangulation of data, peer debriefing and member checking (krefting 1991; onwuegbuzie et al. 2009; ritchie et al. 2013). results the main theme identified was ‘the burden of caring for children with asd’. although two categories were identified in the analysis of the findings, namely ‘the caregivers’ emotional dilemmas’ and ‘difficulty accessing crucial services in the management of children with asd’, this article only reports on category 1 and the three subcategories as displayed in table 1. theme: the burden of caring for children with autism spectrum disorder this is the main theme to emerge, describing the caregivers’ daily challenges in taking care of their children with asd. the caregivers highlighted their challenges, ranging from emotional predicaments to difficulties in accessing crucial services in the management of their children with asd. for example, some caregivers said: ‘…he can be chaotic; you have no peace.’ (drusila, a 70-year-old farmer and grandmother of a child with asd) ‘…all your energy and attention is on this child.’ (jane, a 37-year-old revenue collection officer and mother of a 4-year-old child with asd) ‘…little support from the government; this will drain you out.’ (david, a 40-year-old refugee and father of a child with asd) in the category of ‘caregivers’ emotional dilemmas’, caregivers described the ordeals they undergo in their daily lives with their children with asd. these range from being psychologically affected as an individual and as a family to the effects of the community’s perception. the society’s view towards autism spectrum disorder according to the perceptions of the caregivers, the community’s view of the causes of asd is that they lie solely in three aspects: the woman (as the main cause), marrying into the wrong tribe and supernatural causes. jane and teresa reported that society believes that the causes of asd are linked to the family of the woman, probably ‘as a curse to certain families on the woman’s side’ (jane, a 37-year-old revenue collection officer and mother of a 4-year-old child with asd). annete said that her husband blamed her for their child being diagnosed with asd, for naming the child after her deceased father. she said, ‘i named this child after my father; so when we discovered he (the child) had this problem (asd), my husband chased me out of our marital home – he insisted they don’t have such children in their blood.’ (annete, a 26-year-old business lady and mother of a 5-year old child with asd) therefore, it is not surprising that once the child is born with asd, the man and the community blame the woman as the main cause, or actions linked to the woman. as zipporah said: ‘the mother must have been unfaithful’ (zipporah, a 28-year-old teacher and mother of a child with asd, also drusila’s daughter). jane also said: ‘these behaviours indicate possession by evil spirits. i know children who behave this way, because of her [the mother of a child with asd]’ (jane, a 37-year-old revenue collection officer and mother of a 4-year-old child with asd). on the other hand, there are erroneous beliefs about the causes of asd as ‘punishment from the gods’ (john and linda), and therefore, the solution is either to do away with the child with asd or to perform a ritual ‘to appease the gods’ and safeguard the child. kezie, zipporah, john and linda suggested that a lack of information regarding the causes of asd leads to some participants believing that some kind of ‘spell’ may have befallen the child, and that the solution required was ‘to appease the gods’. jane and ann indicated that society felt such children should not be living with their mother’s family. jane reported what the community thought about her child’s condition: ‘she [the child with asd] is not ours now; the other grandparents can take her – that’s where she belongs’ (jane, a 37-year-old revenue collection officer and mother of a 4-year-old child with asd). strained couple relationships the demands and behavioural implications of asd wear families down, particularly in terms of intimacy between married couples. annete wondered if her child’s condition was the cause of her husband’s unfaithfulness: ‘my husband is unfaithful these days; i don’t know; i always ask myself: is it because of our child’s condition? he has turned to being a drunkard … comes home late!’. (annete, a 26-year-old business lady and mother of a 5-year old child with asd) jane added (supporting her hand with her left arm, looking down, with a sad face): ‘our social life has been affected, with my husband. even our sex life is not what it used to be, we don’t enjoy it anymore; because all of your energy is the child’. (jane, a 37-year-old revenue collection officer and mother of a 4-year-old child with asd) having a child with asd is heart-breaking particularly for a woman, and the hurt is often extended to close family members. the difficult situation of managing the destructive behaviours of children with asd often results in divorce. drusila stated (with tears in her eyes, hands squeezing her handkerchief): ‘…when i saw them, i was overwhelmed by joy; you know, i stayed with him [her grandson], he was difficult, and he could break everything in the house. it is when i asked whether my daughter’s marriage could last; its three years since they are together. because most of the husbands run away.’ (drusilla, a 70-year-old farmer and grandmother of a child with asd) coping with the situation learning to accept their children’s disabilities, receiving support and initiating the role of advocacy were important phases of learning necessary to cope with the reality of having a child with asd. different participants reacted differently on learning about their child’s condition: lydia, boaz and kezie could not believe the diagnosis, and remained in ‘shock and denial’. teresa, on the other hand, had similar feelings to aunt ann: it was difficult for them to accept that their children had been accurately diagnosed. james added: ‘first it was denial; to accept that your child has a problem… (shaking his head): “…it takes courage, time – and you tell yourself, it’s okay, i will wait…”’ (james, a 30-year-old government employee and father of a child with asd). support from both family and colleagues, particularly for those who were employed, played a crucial role in the caregivers’ adjustment to their children’s condition. being employed reduced the burden of having to take care of children with asd. for irene (and other employed participants), colleagues could provide support and shield absences from work by enabling them to work in shifts. linda noted that as much as managing children with asd might be challenging, support from those who understand such children enabled caregivers to adjust. as she said: ‘i was blessed to have a good housemaid, who has taken care of my child all this time’ (linda, a single mother of a 5 and half year-old child with asd). it is also important to note that attending therapy sessions contributed immensely to the adjustment of caregivers to their children’s condition. for instance, most of the participants indicated that meeting with other caregivers whose children had similar problems, or worse, played a vital role in accepting their children’s condition. ann (and other participants) noted: ‘sometimes you think, “i’m alone”; but at the clinic, you find those who are even worse, but their caregivers are okay…’ (ann, a 24-year-old, had a high school education and was employed as a caregiver of a child with asd). trizia also noted ‘…but i am happy with colleagues, they are very supportive, even my relatives’. zipporah added: ‘i had mixed feelings; my husband took care of everything, and he has been encouraging me’ (zipporah, a 28-year-old teacher and mother of a child with asd, also drusila’s daughter). interestingly, the study established that other caregivers had gone a step further – to initiate an advocacy role for these children. this was usually after going through a lot and realising that no association was willing to speak on their behalf. grace said: ‘yes, his [her child’s] condition has made us [the caregivers] advocate for them [the children]’ (grace had a high school education and was employed as a caregiver of a child with asd). kezie added: ‘another thing is talking about his condition…those who can listen, i explain to them about asd – to enlighten them; and i also leave everything to god’ (kezie, mother of a 6-year-old child with asd). for these caregivers, the coping process was difficult; however, learning from other caregivers with similar challenges enabled them to adjust. those who had support from family members were also able to adjust. however, there was a group of caregivers who realised there was discontentment in the community and took it upon themselves to educate and advocate for the well-being of their children with asd. though coping with their children’s condition was difficult, depending on different circumstances the caregivers were able to take care of their children with asd. discussion the main finding of this study is that participants experienced an emotional burden when taking care of children with asd. participants initially found it difficult to accept and process the diagnosis. the communities in which the participants live believed that asd is caused by women’s previous forbidden cultural actions or through marriage to members of certain prohibited tribes. some participants blamed supernatural powers for causing asd. these findings were consistent with the study conducted by gona (2016), who also reported on the lack of information about the causes of asd. inadequate information on the causes of asd may lead to people developing their own misconceptions, based on their spiritual and cultural beliefs. critical questions regarding the value of ubuntu as it applies to children with asd and other disabilities may create opportunities for revisiting existing knowledge frames of caregivers, extended families and community members in general. educating caregivers and community members on viewing children with asd as individuals with unique identities and specific contributions to the family and the community may strengthen the neurodiversity perspective in african communities. a deeper exploration of how caring for a child with asd informed or changed the caregivers, own cultural and spiritual beliefs of disability may contribute to addressing the stigma integrating children with asd into african communities. the challenges faced by participants included difficult behaviours in their children, which often resulted in isolation from family circles and strained marriage relations. dabrowska and pisula (2010) suggested that families taking care of children with asd require more social and financial support to cope well with their children’s condition (republic of kenya 2014; samadi & mcconkey 2011). social isolation as a method of protecting their children from the negative reactions of society may be addressed by educating and further exploring the support tribal councils could potentially provide within communities. this may enable tribal leaders to engage with the challenges and opportunities experienced by caregivers as contributing members of the community. implementing the ubuntu philosophy on caregiving practices of children with asd may enable occupational therapy practitioners and caregivers to learn collectively how to plan and develop comprehensive support services for children and caregivers. in their unfavourable circumstances, the caregivers taking care of children with asd developed mechanisms to enable them to live a balanced life. through bringing their children to the occupational therapy department for therapy, they learnt that other caregivers faced similar predicaments. participants’ accounts of these interactions confirmed the importance of creating a space in which caregivers of children with asd could interact informally before, during or after therapy sessions. the participants valued such peer support from other couples. this aspect should be seen as crucial in the management of children with asd. because of the community’s spiritual and cultural beliefs that disability is an evil, caregivers of children with asd are isolated and often did not receive the needed support from partners and close family members. the support from family members and colleagues was highlighted as an important element for caregivers’ adjustment, particularly for those caregivers who were working, as their colleagues were able to organise flexible working schedules to enable them to focus on the needs of their children. similarly, luong, yoder and canham (2009) stated that mothers cope well when they learn from those mothers whose children have similar problems. social support plays a vital role in parents’ adjustment and in enhancing good health – a good strategy for therapists to utilise collaboratively with caregivers (brien 2007; ganz 2007; gona et al. 2015; luther, canham & cureton 2005; ruiz-robledillo et al. 2014; samadi & mcconkey 2011). strengths and limitations the views of the participants in the sample do not represent the views of all consumers of occupational therapy services. the findings do not reflect the views of carers of children with asd who have never accessed occupational therapy services in the public health sector. a cross-sectional survey that reflects views of a wider population may be more representative of all caregivers of children with asd in kenya. implications and recommendations rehabilitation care practitioners in kenya could collaborate with caregivers to create awareness of the medical causes of asd. efforts should also focus on creating opportunities where caregivers, the community and service provided could engage on african perspectives of disability and how best to design services that complement the needs of caregivers and the broader community. further research is required on exploring african perspectives as an additional view to neurobehavioural and neurodiversity perspectives of asd. moreover, a collaborative approach within a feminist theoretical framework may further illuminate the nature of support needed by male and female caregivers. awareness campaigns and educational initiatives might also alleviate the public’s misconceptions and prejudices concerning this condition. a feminist perspective on the responsibility and role of women in the construction of health and wellness in african nations would illuminate the gaps in support provided to children with asd and their caregivers. furthermore, there is a need for multi-disciplinary collaboration across different sectors in order to streamline resources and train professionals in the utilisation of asd care guidelines intended for dealing with spirituality and cultural beliefs related to asd in relevant institutions. conclusion this study endeavoured to establish the everyday experiences of caregivers whose children with asd were receiving occupational therapy at kenyatta national hospital. the participants reported on the challenges faced, as well as their support needs. spiritual and cultural beliefs about the causes of asd strongly influence the experiences of caregivers of children with asd. mothers mostly experienced rejection from partners, family and the community, as they were held responsible for the child’s condition. such negative attitudes towards disability hamper the development of care pathways for children with asd and their families in kenya. acknowledgements the authors would like to thank the participants attended to at 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(probe: financial challenges? accessing health care services? accessing education services? social challenges?) q8. how do you cope with the challenges identified above? q9. do you receive any kind of support from: the government religious organisations nongovernmental organisations local groups (ask to specify)? q10. is there anything that can be done to improve the experience of taking care of children with autism spectrum disorder? (probe: by the government? by religious organisations? by schools? by hospitals? by any other group?) q11. let us summarise the key points from the discussion. is there anything else that anyone of you would like to add? thank you very much for taking your time to take part in this discussion. abstract introduction research methods and design results discussion conclusion acknowledgements references footnote about the author(s) ronel davids department of social work, faculty of community health sciences, university of the western cape, bellville, south africa maria van staden gender equity unit, dvc research and innovation, university of the western cape, bellville, south africa citation davids, r. & van staden, m., 2024, ‘hear our voices: the perceptions and experiences of women who are deaf on gender-based violence’, african journal of disability 13(0), a1490. https://doi.org/10.4102/ajod.v13i0.1490 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa,’ under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research hear our voices: the perceptions and experiences of women who are deaf on gender-based violence ronel davids, maria van staden received: 31 may 2024; accepted: 30 sept. 2024; published: 15 nov. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: while all women are at risk of gender-based violence (gbv), it is essential to acknowledge that women are not a homogenous group and that women who are deaf may experience gbv differently. this study aimed to answer the question: what are the perceptions and experiences of gbv among women who are deaf? objectives: the study’s objectives were to explore and describe these women’s understanding of gbv terminology, their perceptions of gbv and challenges regarding support strategies in place to respond to their unique circumstances. method: a qualitative study with four workshops was conducted with 60 participants. the data collected were analysed using thematic analysis. results: the results yielded three themes that intrinsically spoke to women’s understanding of gbv terminology, perception of gbv and challenges accessing support. the results highlight that women who are deaf are at a greater risk of gbv. participants emphasised the importance of exploring the perceptions of gbv among men who are deaf. findings also indicated women’s challenges when seeking support. conclusion: the findings underscore the necessity of offering specific assistance to deaf women facing gbv. based on the study findings, it can be concluded that those providing support in gbv matters should receive specialised training in gbv, including deaf culture and south african sign language. contribution: the study findings contribute to the field of disability and the development of effective gbv strategies and programmes that are inclusive of women who are deaf within a south african context. keywords: gender-based violence (gbv); women who are deaf; deaf community; critical disability theory; support. of note – the article followed the convention of capitalising ‘deaf’1 introduction gender-based violence (gbv) or violence against women and girls (vawg) is a pervasive phenomenon, which affects one in three women during their lifecycle (world health organization [who] 2013). it is a global public health burden and an encroachment on human rights (guedes et al. 2016). gender-based violence is therefore a significant global public health challenge that deprives the fundamental human rights and jeopardises the well-being of women and girls (who 2013). south african scholars argue that only one in nine incidences of gbv is reported, and the prevalence is therefore higher than the reported statistics. women reported 36 597 cases of sexual offences in 2018/2019 (statistics south africa 2018). the south african president affirmed that there were nearly 73 000 assault cases between july and september 2021, and more than 13 000 of these were domestic violence-related. the south african government subsequently instituted progressive legislation and various gbv policies. the domestic violence act (1998:1) explicitly emphasises gbv as a response to the high prevalence of this phenomenon and empathetically refers to the victims of domestic violence as ‘among the most vulnerable members of society’. this legislation therefore acknowledged the severity and social impact of this form of abuse in the south african context. gender-based violence and women with disabilities research has emphasised gbv and women for years, but there is limited research on the abuse of women with disabilities (meyer et al. 2022). women with disabilities are more vulnerable and susceptible to abuse (humphrey 2016; zamora et al. 2023) than women without disabilities (puri, misra & hawkes 2015). disability is a risk factor for abuse in women, and it influences the dynamics and patterns of violence against women (namatovu, preet & goicolea 2018). most women with disabilities do not report abuse because they are emotionally, financially, psychologically and physically dependent on others. this dependency increases their risk of abuse, oppression and exploitation. devandas-aguilar (2017) highlights that women, young girls and girls with disabilities are overly affected by various forms of gbv, including physical, psychological, and sexual abuse, harassment, coercion, deprivation of liberty, confinement, infanticide, human trafficking, neglect, domestic violence and harmful practices such as forced marriage, female genital mutilation, forced sterilisation and irreversible treatments. this study focusses, however, not on disability and gbv in general but rather on women who are deaf in the context of gbv. gender-based violence and women who are deaf it is essential to acknowledge that women are not a homogenous group. furthermore, all women are at risk of experiencing gbv but women who are deaf may experience the phenomenon differently. they are also more susceptible to gbv because of their deafness. deafness can affect the well-being of women who are deaf on various levels and deprive them of their quality of life. deafness influences their access to communication and information negatively and thus affects their social interaction. deafness can influence their emotional well-being and contribute to isolation, loneliness, anxiety and depression (haile 2021). there is, however, limited literature on deafness and gbv despite the emotional impact, a lack of communication and information. it is therefore difficult to examine and provide effective intervention to women who are deaf in the context of gbv (terlektsi et al. 2019). research conducted by pollard, sutter and cerulli (2013) as well as meyer et al. (2022) found that the prevalence rate of sexual violence against women who are deaf is double in comparison with their hearing counterparts. a study by napier et al. (2024) with deaf female employees in the united kingdom (uk) reported that their gender and inability to hear caused an unsafe working environment because the employees had difficulty to detect potential threats and communicate their concerns effectively. one of the limited african studies by green and nnatuanya (2024) focussed on the lack of awareness about gbv among women who are deaf, and the inadequate institutional responses and obstacles when they require assistance and access support services. further studies elucidated that women who are deaf have a significant higher risk to psychological abuse and physical violence from their partners in comparison with women who can hear (mastrocinque et al. 2020; schröttle & glammeier 2013). a study by anderson and kobek pezzarossi (2014) wanted to ascertain the explanation of ‘abusive relationships’ by female college students who are deaf, and they found that these students did not perceive the relationships as ‘abusive’ during physical or sexual assault. these authors argue that these students did not have sufficient knowledge on abuse and the subsequent dangers which could account for the high numbers of abuse and victimisation within the deaf community. these authors further underscored that women who are deaf may not only have limited information on the nature of gbv but also on the appropriateness of such violence and ways to address it. this may, therefore, contribute to an increase in violence in women and girls with deafness (anderson & kobek pezzarossi 2014) and a high prevalence of psychological, physical and sexual intimate partner abuse (pollard et al. 2013). it is evident from the literature that there is a correlation between various political, cultural, historical and social intersections and disabilities, and deafness (meekosha & shuttleworth 2009; vehmas & watson 2014). this study was, therefore, based on critical disability theory as the conceptual framework because this theory focusses on external influences such as socialisation and interrogates social norms instead of disability (schalk 2017). male dominance and patriarchy are social norms related to gbv, and the study was therefore also based on feminism, which confronts male dominance and the effects of patriarchy on women’s lives. it was important for this study to recognise the influence of patriarchy on the realities of women who are deaf, specifically in the context of gbv. gender-based violence and service provision to women who are deaf women who are deaf are predisposed to gbv because of service provision barriers, such as medical and legal information and services (mastrocinque et al. 2020). mastrocinque et al. (2020) argue that the lack of information and access to gbv services contribute to gbv in women who are deaf. victims of gbv require specialised services, but these services focus mainly on women in general and do not concentrate on the needs of gbv victims who are deaf. service providers often have limited essential skills to effectively support victims who are deaf (cerulli et al. 2015). service providers have limited understanding of gbv in women who are deaf because of limited specialised learning opportunities and insufficient access to health education programmes in sign language (mckee 2009). many women who are deaf are therefore unable to access information, ignore or are unaware of the fact that they are victims of gbv and do not recognise that the violence inflicted upon them is a crime (mancera et al. n.d.). mancera et al. (n.d.) argue that women who are deaf experience not only gbv but also trauma because of the inaccessibility to health and support services. this is distinctly evident in the south african context where there are limited programmes on the specific needs of women who are deaf and these programmes rarely use south african sign language (sasl). it is, therefore, evident that support for women who are deaf is a particular concern irrespective of the tremendous work from civil society to eradicate gbv and support those affected by this phenomenon. women who are deaf and gender-based violence terminology the inability to understand the terminology or vocabulary related to gbv further exacerbates the experiences of gbv by women who are deaf (davids 2023). a deaf person may not understand concepts such as femicide, intimate partner violence, intimidation, force and gender if there is no appropriate sign language to illustrate those concepts. communication with victims who are deaf encompasses usually lip-reading (barnett 2002) and/or writing back and forth notes, and the rest being educated guessing which (abou-abdallah & lamyman 2021) may contribute to ineffective communication, confusion and frustration when they do not understand the words. it is more concerning because women who are deaf are unfamiliar with gbv terminology and may therefore be unable to communicate their experiences. they understand gbv only on account of their unique lived experiences and perceptions. the lack of understanding of gbv terminology can additionally contribute to frustrations and maladaptive behaviours that compound the recovery from the abuse. research by haricharan et al. (2012) focussed on equal access to health services for the deaf in south africa. these authors found that women who are deaf encounter challenges with language, which resulted in misunderstandings and an increased risk to human immunodeficiency virus (hiv). it is, therefore, reasonable to suggest that they may also experience challenges to comprehend the concept of gbv as a result of their limited familiarity with gbv terminology (mckee 2009). women who are deaf using sasl as their primary means of communication may encounter secondary victimisation in search of assistance with gbv. south africa’s official recognition of sasl acknowledged the fundamental linguistic human rights of the deaf community. this recognition necessitates support services in sasl to ensure the complete integration and active participation of the deaf community within society. a study conducted by masuku, moroe and van der merwe (2021) on the experiences of women who are deaf and hard of hearing to access healthcare services in johannesburg, south africa, confirmed these women experience alienation, exclusion, marginalisation, discrimination, invisibility, a lack of independence and autonomy. these authors recommended training programmes to address communication, reasonable accommodation and attitudes of healthcare professionals. our study similarly advocates for the inclusion of sasl in these training programmes. it is evident from the aforementioned limited studies that there is a noticeable dearth of literature on the lived experiences of women who are deaf on gbv (masuku et al. 2021; napier et al. 2024) and especially in the south african context. these women are largely understudied, and their voices are almost invisible in all areas of scholarship, as stated by chapple (2019). it is therefore crucial to hear the voices of these women who are deaf on gbv to provide effective services to support them. this resulted in the following research question for the study: what are the perceptions and experiences of women who are deaf on gbv? the aim of the study was therefore to determine the perceptions and experiences of women who are deaf on gbv. the research objectives were to explore and describe the specific understanding of gbv as concept by women who are deaf; to explore and describe their perceptions and experiences of gbv; to explore and describe the intersections of oppression that inhibit or shape these understandings of gbv, as well as their challenges with support services to gbv in their unique circumstances. research methods and design study approach and design the study used a qualitative research approach with explorative and descriptive research designs to obtain an in-depth understanding on gbv from women who are deaf. it was evident from the previous literature that gbv in the context of women who are deaf differs from women with hearing, and it was therefore imperative to understand their experiences and perceptions of the phenomenon. there are also various political, cultural, historical and social intersections which influence gbv and the subsequent experiences and perceptions of women who are deaf. qualitative research was appropriate for this study because it focusses on the experiences of people in their natural environment as well as their functioning and interactions (theherani et al. 2015). research setting the study was carried out at three local organisations catering for the deaf and at one organisation for people with disabilities. the first two sites were a local organisation called the deaf community of cape town and the deaf federation of south africa, which provides social services to people who are deaf. the participants were recruited from the organisation’s monthly women’s group programmes with the assistance of the organisation’s directors. the third organisation, called edeaf, is a skills development training provider that strives to improve the social and economic lives of deaf persons through empowerment and skills development programmes. the participants were recruited from the skills development programme with the assistance of the development programme manager. the fourth workshop took place at the orion organisation in atlantis. these participants were recruited on behalf of the researchers by a community activist who works in the deaf community in atlantis and who also secured the venue at the orion organisation. none of the participants were coerced to participate. participants had the right to withdraw from the study at any point with the assurance that their data would not be used. study participants and sampling strategy the study population was defined as all women who are deaf. the study used purposive sampling and recruited 60 females, and the main inclusion criteria were that the women had to be deaf, were users of sasl, and were above the age of 18 years. participants did not need to be married or in a relationship. data collection the data collection encompassed four workshops each attended by 15–20 women who are deaf. workshops are a valuable platform to recognise and investigate complicated issues (ørngreen & levinsen 2017). it is a ‘research design and analysis, located within an understanding of learning as situational and contextual … and give participants’ ability to act’ (ørngreen & levinsen 2017:70). the use of workshops was consistent with the conceptual framework, critical disability theory, which focusses on the situational and contextual experiences and knowledge of participants instead of disability during gbv. during the workshops, the researchers used a semi-structured interview guide to ask questions. to ensure understanding, the researchers presented the questions and various gbv terms on powerpoint slides. in addition, the south african sign language interpreter (sasli) interpreted the questions to the participants to ensure full understanding. participants answers were video recorded with the participants’ permission. the researchers also ensured open and trusting environments during the workshops where participants could share their experiences. data analysis data analysis was based on thematic data analysis methodology by braun and clarke (2006). the researchers transcribed the video-taped recordings from the workshops to get an in-depth sense of the data in relation to the research questions, aim and objectives. the researchers included the following six steps during data analysis: familiarised themselves with the data; generated codes from the collected data; identified themes; reviewed the themes; defined and named themes; and produced a report. the researchers used deductive reasoning in the identification of the themes according to the interview schedule because the researchers deemed it necessary to focus on the literature and critical disability theory and feminism to provide context specific findings on gbv in women who are deaf. the principal researcher (a sasl user) also ensured accurate interpretations by the sign language interpreter (sli) by comparing those with the recorded videotapes. this process contributed to the trustworthiness of the data. ethical considerations through a south african sign language interpreter (sasli), the researchers made sure to obtain informed consent for voluntary participation, which involved getting permission to video record the workshop sessions, ensuring confidentiality and privacy such as maintaining the anonymity of participants’ details and narratives (strydom & roestenburg 2022), and minimising the risk of harm to the participants. a female sign language interpreter (sli) for the workshops was recruited based on her skills, professional conduct, years of experience and good standing in the deaf community and acceptance by the participants participating in the workshops. the sli had to sign a confidential form. ethical clearance to conduct this study was obtained from the university of the western cape, humanities and social science research ethics committee (no. hs22/5/11). results the data analysis resulted in three themes, which encompassed: (1) a limited understanding of gbv terminology; (2) perceptions of gbv; and (3) challenges and a lack of empathy regarding access to support services. discussion theme 1: limited understanding of gender-based violence terminology theme one focusses on the understanding of gbv terminology by women who are deaf. this may give rise to misconceptions and misunderstandings on the characteristics of gbv. the participants narrated how words – spoken words – propagated possible misunderstandings. the following narratives highlighted this issue: ‘[c]ertain words used by the hearing people like perpetrator or sexual harassment are words we don’t understand.’ (participant 4, 45 years old, female) ‘[t]he words victim or survivor, what one is better to use or what does it mean to be a survivor?’ (participant 34, 37 years old, female) ‘i don’t know what they mean by force or control, for me, it means the same.’ (participant 20, 28 years old, female) ‘what does intimate partner violence mean?’ (participant 17, 41 years old, female) ‘[d]on’t know the word assault, we also don’t know how to sign that word, it must be explained to us to understand.’ (participant 48, 50 years old, female) one participant stated: ‘we deaf people know the sign, but we don’t understand what the word means e.g. physical abuse, i know how to sign it, but i don’t know what it means when they say the word to me.’ (participant 33, 44 years old, female) our findings resonate with the studies by anderson and kobek pezzarossi (2012) and mastrocinque et al. (2022) in the united states (us), and napier et al. (2024) in the uk, which affirmed that women who are deaf often do not necessarily understand the meaning of gbv. a study by anderson and pezzarossi’s (2012) among women who are deaf at a us college campus found that limited knowledge of gbv terminology significantly contributed to a higher prevalence of abuse and victimisation within the deaf community. this is particularly pertinent given that individuals affected by such experiences may not recognise the warning signs of gbv. crowe (2017) gives compelling reasons for this phenomenon by stating that the inability to hear and understand gbv terminology contributes to vulnerability and a higher risk of gbv in women who are deaf. the researchers interrogated these findings by asking the questions: could these compelling reasons also relate to underreporting by these women of the abuse? furthermore, could their understanding of gbv terminology allow them to think that such abuse is acceptable? it will be necessary to do additional research to answer these questions among women who are deaf in the south african context. theme 2: perceptions on gender-based violence sub-theme 2.1: the role of the family in perpetuating gender-based violence theme two focusses on the perceptions of gbv by deaf women. the comments by the participants in sub-theme 2.1 provided valuable insight into these women’s perception of gbv. their responses indicate that women who are deaf perceived that other women do not protect them against gbv. it was also evident that the participants experienced power and control by husbands and family in-laws, which was reinforced by culture and religion. this corresponds with the conceptual frameworks of critical disability theory and feminism which emphasise socialisation, male dominance and patriarchy. the following narratives illustrated the influence of socialisation, social norms and patriarchy on the perceptions of women who are deaf: ‘i must do as told by the husband’s family; that is abuse.’ (participant 29, 38 years old, female) ‘women must obey what they are told by their in-laws – can’t talk back, it’s cultural they say.’ (participant 16, 27 years old, female) ‘it is your marital duty to your husband; my mother-in-law tells me.’ (participant 38, 47 years old, female) ‘mothers-in-law protect their sons – they are aware of the abuse – they allow the abuse to happen to women.’ (participant 22, 27 years old, female) ‘they (mothers-in-law) protect their sons; they don’t stand up for you; they also abuse us by keeping quiet or forcing us to accept the abuse all in the name of religion.’ (participant 31, 42 years old, female) ‘i am angry more at his mother – i thought another woman would stand or protect me.’ (participant 39, 44 years old, female) the following two comments speak to the feelings to how participants felt: ‘sometimes you feel powerless and do as they say as you believe them.’ (participant 27, 28 years old, female) ‘my husband’s mother always protects my husband – i am not important – i am not heard.’ (participant 42, 55 years old, female) zinyemba and hlongwana (2022) affirm that men are the primary perpetrators of gbv against women. the comments by the participants illustrated that male entitlement and dominance contributed to intimate partner violence, but this was further exacerbated by other women who believe in this entitlement and male dominance over other females. it was evident from the findings that women (mothers-in-law) often contribute towards the perpetuation of male superiority and dominance in the name of culture and/or religion. the women subsequently experienced powerlessness. govender (2023) asserts that violent behaviour towards women is entrenched in a patriarchal system and is justified through many cultural and religious beliefs which reinforce power over women. these acts of violence against women are sometimes rooted in male entitlement and control of women and their bodies, with the belief that women must be submissive towards their husbands (mshweshwe 2020; sikweyiya et al. 2020). women who are deaf experience dual minority statuses because of the intersection of paternalism, which manifests especially in deaf individuals and patriarchal interpretations on women (prior 2014). literature indicated the subjugated experiences of women who are deaf with their mothers-in-law during gbv. our results concur with the results of a quantitative study by filson et al. (2010) on the interrelationship between powerlessness and gbv, which found that women who experienced a sense of powerlessness (as alluded to in the comments) exhibited elevated levels of intimate violence victimisation and increased rates of depression. this can then be related to another force, the phenomenon of ‘hearing-deaf’ in families, which should be considered in relation to the participant’s comments. the term ‘hearing-deaf’ can also be referred to as hearing privileges. the comments by the participants illustrated power imbalances between the women who are deaf and their family in-laws which also mirror the discrepancies between social power and social privilege in hearing privileges. these hearing privileges contribute to the past assertions of hornung, mccullough and sugimoto (1981:675), as ‘an increased risk of psychological abuse, an even greater risk of physical aggression, and a still greater increased risk of life-threatening violence’ for women who are deaf. the study by anderson and pezzarossi (2014:413) asserts that ‘the abuse of hearing privilege creates unique relationship dynamics and characteristics that may not be present in other violent relationships’. therefore, the findings of our study could indicate that hearing privileges differentiate between the experiences of gbv in women who are deaf and women in general. it is evident from the findings that further research is essential to get an in-depth understanding of the dynamics between hearing and deaf family members and gbv within these relationships. sub-theme 2.2: the role of men who are deaf perpetuating gender-based violence the role of men is imperative to understand the intersections of oppression that inhibit or shape the understanding of gbv in women who are deaf. this also concurs with feminism and critical disability theories as conceptual frameworks of the study. the following comments from the participants illustrated that the exploration of men’s understanding of gbv may mitigate the effects of the phenomenon: ‘it would help that deaf men also understand what gbv is – many of them don’t know what gbv is.’ (participant 23, 29 years old, female) ‘gbv is not just for us women, they (men who are deaf) also need to understand how they abuse women, they need to understand gbv words, learn to respect us.’ (participant 47, 52 years old, female) ‘they (men who are deaf) need to understand abuse, they need training and need to respect us as women.’ (participant 19, 31 years old, female) ‘maybe they don’t understand what is gbv because they think it is normal as they don’t understand.’ (participant 22, 33 years old, female) ‘gbv is not a women thing alone, the men must also be involved and get this information and what can happen to them if they abuse women.’ (participant 22, 33 years old, female) ‘they need to know that they can be punished for [by] abusing women.’ (participant 49, 48 years old, female) these findings illustrated that men should also be included in the understanding of gbv terminology, especially in the context of the deaf community and sign language. the women emphasised the need to educate men on gbv and the repercussions of the abuse. these comments imply healthy and respectful relationships in which men understand their roles and responsibilities to promote a safe environment. furthermore, these observations suggest that the participants perceive gbv not solely as a women’s issue but also imply that men who are deaf should take responsibility for their behaviour and understand the legal implications of gbv. gumede et al. (2023) emphasise the need for additional research and literature in the sub-saharan african context on the perceptions and experiences of men regarding gbv. added to this recommendation, this sub-theme emphasises the need for additional research to understand the perspectives of men who are deaf on gbv. such research could contribute to a better understanding of gbv from the perspective of men who are deaf and, in doing so, modify misconceptions and myths about gbv, which will consequently contribute to more accurate insights and appropriate responses within the deaf community. theme 3: challenges accessing support and a lack of empathy the third theme focusses on the challenges experienced by women who are deaf to access support services during gbv. support is intricately linked to the notion of access and is directly associated with attitudes, especially within the context of critical disability theory. the participants reflected on the attitudes of service providers and provided further details on their lived experiences when they searched for support during gbv: ‘i reported my husband to the police for rape – but nothing happened to the case. there was no interpreter for me.’ (participant 45, 55 years old, female) ‘i don’t know where to go to report gbv or where to learn about gbv.’ (participant 52, 56 years old, female) ‘they tell us to write because they don’t understand us, but the way we write is not understood by a person who is not deaf or understands the deaf.’ (participant 42, 55 years old, female) ‘i don’t understand the words they used when i went for help.’ (participant 13, 40 years old, female) ‘i didn’t feel comfortable when telling them what happened, they don’t understand me.’ (participant 28, 37 years old, female) ‘they (police) laughed at me when i tried to report the case because i was signing.’ (participant 45, 55 years old, female) ‘they threw the case out of court as there was no interpreter for me.’ (participant 18, 41 years old, female) the findings of this study illustrated the communication barriers which underscore the challenges of women who are deaf during the access to services for gbv. the services are inaccessible because of the communication barriers at police stations and courts, limited access to sign language interpreters and the inability of these women to understand the gbv terminology used by healthcare providers. participants expressed discomfort in sharing their experiences and were anxious because they could be misunderstood and ridiculed when using sign language or when they have to put their experiences of abuse in writing. they consequently experienced a breakdown in communication. the findings also illustrated the experiences of frustration and vulnerability because a participant could not communicate with the service providers and they did not comprehend her situation. one participant shared her experience of being ‘laughed at’ by the police when she attempted to report a case of abuse, which could have exacerbated her vulnerability to safety (crowe 2017). gender-based violence in women who are deaf is often ignored despite evidence. furthermore, service providers do not provide efficient services because they are not trained in deaf culture and sasl. moreover, they are ignorant and do not recognise the needs of women who are deaf to support them (smith & hope 2015). our study findings concur with those of shavers et al. (2005) on community-based intervention with vulnerable women. their study underscored access to appropriate emotional, psychological, physical, social and economic resources to mitigate the potential adverse effects of gbv. furthermore, the study findings raise concerns about the role, attitudes and empathy of service providers, especially concerning their ethical obligations and/or principles and professional standards. these attitudes subsequently affect the quality of support and care received by women who are deaf. the above-stated remarks underscore the direct impact of communication challenges on the quality of support services to these women. the participants’ experiences corroborate the assertion by masuku et al. (2021) that training programmes should prioritise the development of communication skills, advocate for reasonable accommodation and assistance, and rectify the attitudes of healthcare professionals. the quotations also concur with the findings in a study by napier et al. (2024) on the absence of deaf awareness among service providers. the findings also substantiate the assertion by masuku et al. (2021:6) that ‘communication challenges result from deficiencies in sign language skills among healthcare professionals treating deaf women’. our findings emphasised the need to provide specialised support to women who are deaf in the context of gbv. this will minimise the obstacles in their search for assistance and access to support services and address the ineffective institutional responses. conclusion the aim of the study was to determine the perceptions and experiences of women who are deaf on gbv. literature on the prevalence of deafness and gbv is limited despite the emotional impact, communication barriers and information which complicate the lives of those who are most affected by the phenomenon (terlektsi et al. 2019). this study is significant because it focussed on the perceptions and lived experiences on gbv by women who are deaf. the main themes acknowledged gbv from the perspective of women who are deaf. theme one focussed on the limited understanding of gbv terminology by women who are deaf. they subsequently experienced challenges in understanding the characteristics of gbv. their inability to hear and understand important information contributed to their vulnerability and risks to gbv. theme two focussed on the perceptions of women who are deaf on gbv. they accentuated the role of family members in gbv (sub-themes 2.1) and referred to other women (mothers-in-law), which contributed to male superiority and dominance. they also illustrated the privilege of hearing versus deafness in the discrepancies of social power in families. their narratives underscore the powerful positions of men towards women and the influence of religion and culture on gbv. the women suggested, in sub-theme 2.2, the inclusion of males, especially those who are deaf, in understanding and being educated on gbv. these males should not only understand the terminology related to gbv in the context of deafness and sign language but also their role and responsibilities to promote a safe environment. theme three focussed on the challenges experienced by women who are deaf to access support services during gbv. this theme demonstrated the negative attitudes of service providers, and it was evident that there should be additional training to provide specialised and empathetic support services to women who are deaf in the context of gbv. the conclusion of the study was that the voices of women who are deaf are not heard irrespective of the higher risk to gbv. they have limited support and subsequently experienced oppression from their families, male counterparts as well as social institutions, for example, healthcare and justice. there are persistent high levels of vawg which result in intensified feelings of insecurity among women. this study focussed on the voices of women who are deaf in the context of gbv to interrogate the social norms and structures in society as proposed by critical disability theory and feminism. the research study contributes to the growing body of knowledge on the circumstances and needs of people with disability and in this case, for women who are deaf to ultimately ensure their inclusion and participation in matters that affect their lives. acknowledgements the authors would like to acknowledge all the women who participated in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions r.d. and m.v.s. were involved in the design of the study and data collection. r.d. also completed the data analysis and writing up of the study. funding information funding was received from the cape higher education consortium – western cape government. data availability the data of this study are available on reasonable request from the corresponding author, r.d. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the 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geneva1. zamora arenas, j., millán jiménez, a. & bote, m., 2023, ‘health and socioeconomic determinants of abuse among women with disabilities’, international journal of environmental research and public health 20(12), 61–91. https://doi.org/10.3390/ijerph20126191 zinyemba, k.g. & hlongwana, k., 2022, ‘men’s conceptualization of gender-based violence directed to women in alexandra township, johannesburg, south africa’, bmc public health 22, 2235. https://doi.org/10.1186/s12889-022-14616-5 footnote 1. of note – the article followed the convention of capitalising ‘deaf’ to signify cultural deaf identity, and those that rely on south african sign language (sasl) as their primary mode of communication as opposed to lowercase ‘deaf’ referring to audiological hearing loss. abstract introduction methods results discussion limitations conclusion and recommendations acknowledgements references about the author(s) precious n. sango international school of disability studies, jos and abuja, nigeria faculty of health and social sciences, school of applied social sciences, university of bedfordshire, luton, united kingdom mohammed bello african centre for innovative research and development (afri-cird), kano, nigeria roy deveau tizard centre, university of kent, canterbury, united kingdom kevin gager propcom mai-karfi programme, abuja, nigeria belinda boateng propcom mai-karfi programme, abuja, nigeria hauwa k. ahmed propcom mai-karfi programme, abuja, nigeria mohammed n. azam propcom mai-karfi programme, abuja, nigeria citation sango, p.n., bello, m., deveau, r., gager, k., boateng, b., ahmed, h.k. et al., 2022, ‘exploring the role and lived experiences of people with disabilities working in the agricultural sector in northern nigeria’, african journal of disability 11(0), a897. https://doi.org/10.4102/ajod.v11i0.897 original research exploring the role and lived experiences of people with disabilities working in the agricultural sector in northern nigeria precious n. sango, mohammed bello, roy deveau, kevin gager, belinda boateng, hauwa k. ahmed, mohammed n. azam received: 30 may 2021; accepted: 21 apr. 2022; published: 16 aug. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: it is estimated that over 75.0% of households in sub-saharan africa are involved in agriculture, and the majority of the poor in rural areas rely on agriculture for their livelihoods. one billion people living with disabilities in lowand middle-income countries are argued to make up the poorest of the poor, yet to our knowledge, no literature has captured the livelihood of people living with disabilities in the context of farming in nigeria, specifically northern nigeria where most of the households are involved in agriculture and related activities. objectives: this article reports on findings from a study that sought to understand disability in the context of northern nigerian farming, with a particular focus on the role and lived experiences of people living with disabilities working in the agricultural sector. method: a survey questionnaire was developed and captured the experiences of 1067 people living with disabilities working in the agricultural sector across five states (adamawa, bauchi, jigawa, kaduna and yobe) in northern nigeria. results: findings indicate that people with disabilities are actively participating in agricultural activities for several reasons, which specifically included ‘forced to and for survival’. when participants reported needing care, this was predominantly provided by family members. findings also showed that participants with disabilities experienced several economic and sociocultural challenges because of their impairments. conclusion: this study adds to the very limited literature on farmers living with disabilities in sub-saharan africa and so highlights the need for more research to be conducted with farmers living with disabilities in nigeria, particularly female farmers living with disabilities. these will provide more evidence pertaining to the experiences of farmers living with disabilities in order to provide effective disabilityand gender-inclusive agricultural and entrepreneurship programmes in nigeria. contribution: the results of this research reveal important insights relating to the experiences of farmers living with disabilities in northern nigeria, which can contribute to informing future developmental projects to achieve effective inclusion and actively benefit people living with disabilities. keywords: disability; agriculture; farmers; discrimination; northern nigeria. introduction according to moyo (2016), 75% of the population in sub-saharan africa (ssa) is involved in farming and related employment, and the majority of the poor live in rural areas where their livelihoods derive from agriculture. this has important implications for nigeria’s poverty alleviation plans, as it is estimated that in 2012, 69% of the poor in the country derived their livelihood from agriculture (nbs 2012). the agricultural sector is specified to be the highest employer of labour in nigeria and significantly contributes to employment and economic growth (oluwatoyese, applanaidu & razak 2016). ogunlela and mukhtar (2009) suggested that agricultural growth is central to development, food security and poverty alleviation and the sustainability of natural resources (acharya 2006) in rural africa. ojiako, idowu and ogbukwa (2014) emphasised the importance of credit and loanable funds or capital as crucial to increasing the development of agriculture and rural economy and reported that most of their participants benefited from cooperative credits and credits from their social networks such as friends and relations; participants had limited access to modern improved technologies (ogunlela & mukhtar 2009) and were less likely to receive assistance from microfinance and commercial banks (also see ogunlade et al. 2016). some of the reasons for the latter are related to high demand for collateral and limited documentation, for example, farmers not registering their properties and assets, high risk and general aversion of banks towards agriculture (abraham 2018; ojiako et al. 2014). the social and demographic characteristics of participants in research (e.g. abraham 2018; ogunlade et al. 2016; ojiako et al. 2014) on farmers located in different parts of nigeria seem to mostly include married male farmers without any disability, with the majority possessing primary school education and farming experience ranging from 10 years or more. the predominance of male farmers living without disabilities in agricultural research in lowand middle-income countries (lmics) may be because of sociocultural, statutory and customary laws and economic components (huyer 2016; ogunlela & mukhtar 2009; world bank 2009). as presented in world bank (2009), the design of policies and projects incorrectly assume that farmers and rural workers are mainly men. this is mainly because even though women are said to be the main farmers or producers in some parts of the world such as ssa, their roles are often not acknowledged, and they face more obstacles compared with their male colleagues in market access, product assets and services, land, labour, financial services, technology and other inputs (see imonikebe 2010; ogunlela & mukhtar 2009; sheahan, barrett & sheahan 2014). for example, crop choice has been mostly determined by gender in nigeria, although these associations of women and men with specific crops and livestock products is diminishing to some extent in parts of the country (see farnworth et al. 2020). northern nigeria is said to be where most households are involved in farming (abraham 2018). none of the literature on agriculture in nigeria reviewed included farmers living with disabilities, and aranda-jan (2021) and ahlenbäck, lee and coe (2020) observed that there is very limited evidence based on the experiences of farmers living with disabilities in lmic. in nigeria, approximately 25 million people live with a disability; 3.5 million of these have very significant difficulties in social and physical functioning (who & the world bank 2011). according to sango (2017), the lack of up-to-date data on the characteristics and experiences of people with disabilities in nigeria and negative attitudes towards persons with disabilities in the country (audu et al. 2013; etieyibo & omiegbe 2016) may contribute to the lack of prioritising of disability issues, delay in the identification of the needs of individuals with disabilities and the implementation of policies to improve their quality of life. people with disabilities have several vulnerabilities, which means they are at increased risk of being marginalised in societal life (cooper et al. 2007; emerson & parish 2010). nigeria is characterised by distinct ethnic groupings (over 250 ethnic groups), varying in sociodemographic and sociocultural practices and religious beliefs (see sango 2013). these ethnic groups speak over 500 different languages with different cultures and traditions (central intelligence agency 2022). the main languages used in nigeria are english, hausa, yoruba, igbo and pidgin english. the country is religiously diverse with more muslims in the north and more christians in the southern parts of the country (see central intelligence agency 2022). these cultural and religious differences have disablist (thomas 2007:73) implications related to stigma and exclusion for persons with disabilities in nigeria (see abang 1988; obiakor 1990; sango 2017). according to sango (2017), the discrimination against persons with disabilities (prohibition) act, 2018 in nigeria proposed changes in the national provision for people living with a disability, including, free regular medical care, free education, transportation and subsidised housing for people living with disability, but these are yet to be implemented. care for people with disabilities in nigeria continues to be mainly provided by families, charities, indigenous and religious communities (see sango 2017). evidence (e.g. banks & polack 2014; groce et al. 2011; mitra, posarac & vick 2013) is beginning to highlight the association between disability and poverty, indicating that 80% of the world’s 1 billion people living with disability residing in lmic such as nigeria are ‘poorer than their peers living without disabilities in terms of access to education, access to healthcare, social support, civic involvement, employment and income’ (who & world bank 2011). although the causal associations between disability and poverty are poorly understood (banks & polack 2014:i; groce et al. 2011:1493–1495; mitra et al. 2013:1–3), it has been suggested that disability is ‘both a cause and consequence of poverty’ and that poverty and disability ‘reinforce each other, contributing to increased vulnerability and exclusion’ (dfid 2000:1–2; ofuani 2011; trani & loebe 2012:s19). by way of illustration, groce et al. (2011) argued that disability can heighten poverty because of the institutional, environmental and attitudinal barriers people living with disabilities face in their daily lives thus contributing to their social exclusion. concurrently, poverty can amplify the chances of having a disability as chronically poor individuals are often at risk of ill health, injuries, malnutrition, inadequate access to public health services and poor living conditions such as lack of safe water and unsafe work environments which could lead to disability. these factors are augmented by conditions of conflict and other humanitarian emergencies in many developing countries such as nigeria (see groce et al. 2011). this research in a topic area with limited evidence (e.g. ahlenbäck et al. 2020; aranda-jan 2021) on disability and agriculture in lmic has the potential to highlight the importance of agribusiness in addressing barriers faced by farmers living with disabilities. these barriers are worsened by the lack of recognition relating to the crucial role agriculture plays as a potential means of livelihood for people living with disabilities (aranda-jan 2021), and often agricultural inclusion is said to focus on the gender gap rather than the disability gap (aranda-jan 2021). research’s aim and questions this article reports findings from a larger project funded by the united kingdom’s (uk) department for international development (dfid), propcom mai-karfi and palladium, which sought to explore ways in which people living with disabilities can be better included in agribusiness in northern nigeria. ‘disability’ in the context of this study is defined as persons: [w]ho have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. (united nations convention on the rights of persons with disabilities 2006:4) specifically, this article addresses the following objectives: describe the characteristics, roles and economic activities (including associated work-related risks) of those living with disabilities engaged in the agricultural sector in northern nigeria explain the ownership structure, financial inclusion, access to and use of agricultural assets by participants living with disabilities examine how farmers with disabilities access information, training and market opportunities in the agricultural sector describe sociocultural implications such as the interplay between gender and disability within the agricultural sector. methods quantitative data were collected, using a survey questionnaire devised for this study, from participants living in the uk dfid’s propcom mai-karfi-palladium-funded project implementation states in northern nigeria, specifically adamawa, bauchi, jigawa, kaduna and yobe states. eligibility for inclusion in the study participants were eligible for inclusion in this study if they met the following criteria: youths and adults (16 years and over) with any type of disability residing in adamawa, bauchi, jigawa, kaduna and yobe states, nigeria and involved in some form of agricultural livelihood or livelihoods related to agricultural activities, for example, trading, marketing and civil servant roles related to agriculture those who could communicate in the english language or one of the local languages (hausa, fulani or kanuri); in cases where the respondent could not communicate in any of the languages, sign language was deployed and responses provided by the respondent were further validated with the caregiver. ethical considerations this research was given ethical approval by the research and ethics committee of bayero university, kano (buk), kano state, nigeria. all adult participants signed a consent form after being given information about the study. for participants below 18 years of age (16 and 17 years of age), consent was sought from their caregiver and guardian. participation in the research was voluntary and participants were repeatedly informed of their right to withdraw and remove their information from the research at any time, without sanction. participants were informed that the information provided would be completely confidential and identifiable information would not be shared. sampling and procedure three local government areas (lgas) that are part of the uk dfid’s propcom mai-karfi-palladium-funded programme in northern nigeria were selected from each of the five states (adamawa, bauchi, jigawa, kaduna and yobe states). this was an exploratory study where scarce data were available on those farmer living with disabilities, as such a multistage sampling procedure was used to select the study sample within the selected states. firstly, disabled persons’ organisations (dpos), social welfare departments of lgas, district heads (dhs), ward heads (whs) and religious groups (rgs) were approached to identify individuals with disabilities in their communities. secondly, a random sample was taken of participants referred by dpos. finally, all referred potential participants completed the washington group extended set on functioning (wg-es) questionnaire and only individuals who had functional difficulties based on the wg-es questionnaire were surveyed. the study aimed for a total of 12 000 samples (1067 was achieved), with 200 sample sizes for 3 states (bauchi, jigawa and yobe), while kaduna and adamawa had the highest target of 300 each because of their population number compared with the other states. the targeted sample size was based on inputs from the dpos, stating an average size of 600 people living with disabilities can be found in each of the locations where the uk dfid’s propcom mai-karfi-palladium was working. accessibility to people living with disabilities across the locations of uk dfid’s propcom mai-karfi-palladium intervention was a major constraint to obtaining the target sample size. the survey questionnaire was administered by 25 research assistants (ras) who recorded responses via kobotoolbox (toolbox 2016), an open-source suite of tools for digital data collection. the 25 ras (5 per state) were under the supervision of a state supervisor from the african centre for innovative research and development (afri-cird). research assistants were trained in research ethics and in standardised administration of the survey and use of kobotoolbox. a 1-day pilot study of the survey questionnaire was conducted to confirm the validity of survey questions and results were computed. survey interviews conducted were administered and recorded in either english, hausa, fulani or kanuri; these lasted around 2 h each and were conducted between the months of july and august 2019. the interviews were transcribed and translated to the english language by the same ras who administered the survey; this helped to maintain the validity and integrity of data collected. using ras to administer the questionnaire supported participation; however, it may also introduce various systematic biases through asking ras to interpret and enter data during the interviews. steps were taken through training and data validation to avoid such systematic biases. while this sample was of a practical size, it does reflect the experiences of specific geopolitical areas of nigeria and may not be generalisable to all parts of nigeria or neighbouring african countries. the research sample did not adequately capture the perceptions and experiences of mental health and intellectual disabilities. why they were not adequately represented is not clear, but it could possibly depend on how the questions were translated and the perceptions, understanding and attitudes of respondents or the caregivers who supported participants. the survey questionnaire the survey questionnaire (understanding disability in the context of northern nigeria) was designed jointly by the international school of disability studies (isds), propcom mai-karfi and afri-cird. the questionnaire was based upon reading relevant disability literature and examples of similarly focused surveys conducted in an african country (e.g. montrose 2017). the questionnaire had the following sections: profile of respondents: participant characteristics, for example, age, gender, disability type, educational attainment, type of agricultural activity, living and support arrangements. roles, economic activities and work-related risks: agricultural enterprise, for example, rice farming, cattle-rearing. specific agricultural activities, for example, ploughing, planting and weeding. membership of agricultural cooperative and responsibility or leadership role played. ownership, access and use of agricultural assets: assets used in employment, for example, land, motorbikes, tractors, hoes, safety boots, whether the assets are owned, rented or borrowed; ability to use assets unaided or requiring hired labour; presence of cultural norms, which impeded personal use of the assets. decision making on agricultural enterprise: why and who decided to engage in current agricultural activities, paying for required goods and services? who made decisions on what to do with harvest and financial proceeds? access to market information and capacity-building opportunities related to questions within the survey: does the person’s disability enhance or limit their ability to receive training, access buyers and access market prices related to agricultural activities? awareness of laws on disability and influence of social norms and rights on agricultural activities: participant’s experiences or knowledge of social norms and formal or informal laws around disability, whether these are an advantage or disadvantage regarding agricultural activities and whether these can be managed. interfacing with ngos or ingos: receipt of assistance from ngos and which ones. gender and disability in agricultural activities: participants’ views regarding equal treatment of women and adolescent girls in agribusiness; female involvement in agriculture, for example, soybean, maize farming; receipt of support to carry out agribusiness; organisations that support ‘economic empowerment’ of women with disabilities; support received; employment in community organisations; types of agriculture suited to women; equality of support provided with men. financial inclusion and access to finance: ownership of bank accounts and type of accounts; access to digital or mobile banking; organisations providing financial assistance for agricultural activities; receipt of both formal and informal loans and if not, how agricultural activities are funded; reasons for not receiving loans. personality traits and attributes: participants asked to suggest their individual personality traits from a provided list and whether these supported or limited their agricultural activities (e.g. honest, trustworthy), reported elsewhere. poverty probability index (ppi; grameen foundation 2014): the ppi is a tool used for estimating the probability or likelihood of a household falling below a certain poverty line. the ppis are country-specific and include a set of 10 standardised questions (grameen foundation 2014) that are most strongly correlated with poverty, as determined from the country’s household income and expenditure survey. household dietary diversity score (hdds; swindale & bilinsky 2006): the hdds examines the diversity of diet for households; a more diverse diet indicates a greater range of food types being consumed. a more diverse diet is highly correlated with caloric and protein adequacy, percentage of protein from animal sources (high-quality protein) and household income. response categories included closed and open-ended questions, with many questions using both closeand open-ended responses. several questions asked participants to respond to a list with yes or no (and included an ‘any other category’) and an ‘explain your response’ question. for example, the survey question number 2.7 (‘does your disability prevent you from taking on any roles or responsibilities within your organisation?’) was responded to initially with ‘yes’ or ‘no’, followed by, ‘if yes, what type of disability allows this restriction?’ ‘1 = difficulty seeing’; ‘2 = difficulty hearing’; ‘3 = difficulty remembering or concentrating’; ‘4 = difficulty with self-care’; ‘5 = difficulty communicating or being understood’; ‘6 = difficulty climbing stairs’; followed by, ‘explain your response’. some open-ended questions were also employed, for example, question number 6.1: are there any social norms or formal or informal laws around disability that you have that puts you at an advantage when it comes to managing your agricultural activities? explain your answer. most questions allowed for additional comments and included questions related to the effect of the person’s disability upon the responses provided. for example, regarding leadership roles in agricultural cooperatives, participants were asked, ‘does your disability limit your capacity in a leadership role? explain your answer’. only the quantitative findings from the measure are reported in this article. data analysis data from the quantitative survey were analysed using spss 25 (morgan et al. 2019). results are presented using descriptive statistics and statistical significance was tested using cross-tabulation. results general characteristics of participants table 1 shows the distribution of participants by gender, age, state of residence and type of disability and living circumstances by gender and support provision. table 1: general characteristic of participants. the main disabilities reported by the participants were physical, visual and auditory. participants gave the cause of their disabilities as: 23.1% ‘accidents’; 21.4% ‘born with it’; 4.9% ‘old age’; 4.3% caused by ‘religious’ or ‘traditional beliefs’ and 3.4% ‘conflict in my community’. the remainder, just over 40.0% of participants, reported ‘other’ factors as causes of disability; when prompted, illness because of conditions such as polio, glaucoma, leprosy, snake bite infections, childhood illnesses, meningitis or fever were mentioned. the highest level of education attained by the 1067 participants is shown in table 1. the difference in the highest educational attainment level between males and females was significant (chi-square 27.383 [df = 5], [p < 0.000]). women were more likely to report having no formal education and lower levels of secondary and tertiary education. table 1 also displays the living and support arrangements experienced by the participants. a greater proportion of male participants lived at home without support than female participants because it was not required, as most frequently they lived at home supported by unpaid carers (i.e. family members). the ppi measure of poverty showed that this sample experienced very high levels of poverty. a total of 69.0% of participants had a high probability of living on less than us$2.00 per day. the diet of the participants was biased towards cheaper foods. the average hdds score of 6.3 suggested that only 11.3% of the households comprising of participants living with disabilities in northern nigeria consumed a reasonable mix of all food groups. these households most commonly ate meals containing cereals (86.9%, n = 927) and vegetables (64.9%, n = 692), roots and tubers (48.2%, n = 516) and meat (35.9%, n = 383). employment participants reported having their main employment in two main types of agriculture: crop farming and livestock farming (see table 2). many participants undertook elements of each main type of agriculture and other agricultural employment, in addition to their main agricultural employment. for example, a (main) crop farmer may also keep chickens or other livestock and work as an animal welfare worker or civil servant. in all, 42.0% of participants had no employment other than agriculture. a range of different crops and livestock are included in the two main categories, for example, crop farmers included growing rice, beans, millet or maize and livestock included rearing chickens, cattle and pigeons. table 2: all types of agricultural activity† by gender. as seen in table 2, other forms of agriculture practiced to a much lesser degree included agro-processing, animal health workers, input dealers and others. a total of 42.0% of participants engaged solely in agricultural work, while 23.2% of participants also engaged in other, non-agricultural employment. other forms of employment include ‘unspecified’ (20.4%), civil servants (4.9%) and artisans (9.1%). a pattern was observed that those who also worked in non-agricultural sector reported higher levels of educational attainment, for example, participants working as artisans (36%) reported having secondary school education as their highest educational attainment while those reporting as civil servants (44%) reported tertiary level as their highest educational attainment. the main reasons given for working in agriculture were the following: ‘forced to do for survival’ n = 526 (49.3%), ‘passion or interest’ n = 404 (37.9%), ‘family influence’ n = 125 (11.7%). when asked who made the decision to work in agriculture, 85.0% reported they made that decision for themselves and 15.0% reported that others influenced them. caregivers and family members were reported to provide most of the influence rather than other community members. disability played a role in restricting the agricultural activities that participants were able to undertake without support, that is, having to pay for hired help or rely upon unpaid help from family members. three-quarters of the sample said that their disability restricted the agricultural activities they could undertake without assistance from other people. participants with physical, visual and hearing disabilities reported being most in need of assistance with agricultural tasks, for example, ploughing, transportation of farm products to storage, harvesting, weeding and planting; 45.6% (n = 368) of those with difficulty climbing stairs needed assistance, while 31.4% (n = 253) with visual difficulties and 16.5% (n = 133) with hearing disability needed help as well. participants reported using various forms of assistance to carry out their work and other daily activities. the main forms of assistance used reflected the participants’ particular experience of disability and included the use of walking aids or sticks (30%), wheelchairs (27%), hearing aids (14%), sign language training (6%) and record-keeping training (4%). family economic contribution people living with disabilities in northern nigeria contribute significantly to the household incomes, with just under one-half being the main breadwinners. table 3 shows a greater proportion of men than women being the main breadwinners. table 3: household financial contribution by gender. leadership roles in the community as illustrated in table 4, while this sample of people living with disabilities shows that some have leadership roles in their communities, they do not seem well-represented at this level. a greater proportion of men with disabilities hold community leadership roles than women with disabilities, especially in organisational leadership roles. table 4: leadership roles in the community. agricultural cooperatives are one community organisation in agricultural-based societies; 92% of participants did not belong to any agricultural cooperative. of the 8% that did, these included: ‘cripple poultry farming cooperative society’, ‘rice farmers association of nigeria’ and ‘bauchi state deaf farmers’ cooperative society’. when asked why they did not belong to an agricultural cooperative, half of the participants attributed this to their disability. assets: owned, rented or borrowed table 5 shows the level of assets available for use by participants to undertake farming activities and the percentage of those who are owned, rented or borrowed. the high levels of basic equipment (e.g. hoes, cutlasses and water troughs) available for use contrast with the low availability of more expensive mechanised assets such as tractors and motorbikes. table 5: assets: available for use, owned and rented or borrowed. there were no significant differences by gender for assets available for use apart from: land (males 58%; females 49%, chi-square 31.155 (df1), p < 0.000), motor bike (males 43%; females 25%, chi-square 8.211 (df1), p < 0.004) and knapsack sprayer (males 43%, females 39%, chi-square 10.950 [df1], p < 0.001). access to financial and other capacity-building services and financial decision-making seeking and using financial advice, information and services may be important in agricultural enterprise. for example, financial services are particularly important for increasing agricultural development and economy. a majority (68%) did not have a bank account, with a significantly greater proportion of women (80%) than men (64%) not having access to a bank account (chi-square 24.992 [df1] p < 0.000). the most common reason for not having a bank account, reported by 90% of the participants, was having no money to save. most participants lacked awareness of organisations that provide financial assistance to support agricultural activities in their communities (such as the microfinance institutions [mfis], bank of agriculture [boa] and anchor borrowers scheme by the central bank of nigeria, which specifically targets rural smallholder farmers). a significantly greater proportion of men (41%) had no awareness of such organisations than women (32%) (chi-square 7.25 [df1] p < 0.01). a total of 38% of participants reported having no such awareness. access to funds for agricultural activities was predominantly through borrowing from friends (n = 443) or self-financed (n = 868). access to opportunities for capacity-building and business information there are a couple of opportunities for farmers to develop and improve their farming techniques and business skills in nigeria. these include those provided by the small and medium scale development agency of nigeria (smedan), boa, nigeria incentive-based risk sharing system for agriculture (nirsal) and others. the following four factors determined whether participants’ disability limited or enhanced their ability to access four different services: (1) training in agricultural techniques, (2) goods and services required to support their work, for example, seeds, pesticides and fertilisers, (3) access to buyers of products and (4) access to market prices for products to achieve the best price available (as seen in table 6). table 6: the influence of disability upon access to services.† disability: decision-making and assistance needed to undertake agricultural tasks the majority of participants (85.4%, n = 911) reported that they decided on the agricultural activities undertaken. of the n = 156 participants who consulted others, caregivers (42.9%, n = 67) and family members (40.4%, n = 63) provided most of the help, with spouses (6.4%, n = 10) mentioned the least. similarly, 83.0% (n = 886) of participants reported having sufficient funds to access the goods and services they felt were required to engage in their level of agriculture (e.g. fertilisers). deciding what happens to agricultural produce harvested and the income received are important indicators of autonomy and economic empowerment. the individual responses were restricted to farming alone and not household or farmland jointly owned. in this sample, 35% reported making such decisions on their own, 30% said family members were involved and 17% stated that spouses or caregivers were involved. although participants generally make most of the decisions on what to do with produce after harvest, significant differences exist by state (x2 = 0.000), gender (x2 = 0.000) and education (x2 = 0.000). family members appear to make more of the decisions on how to manage the outcome of the harvest than participants in adamawa (48%) and bauchi (47%), while caregivers play the most important role in the decision-making process in yobe (50%) than in any other states. spouses were also reported to make such decisions in adamawa (28%) more than in kaduna (8%). moreover, male participants (39%) were found to have more authority over the decision-making process than female participants (25%). female participants reported relying more on their family members (33%), spouses (19%) and caregivers (22%) than male participants. furthermore, 76% of the participants reported that their disability restricted the agricultural activities they could undertake, and table 7 shows the agricultural activities for which participants used additional help and from whom they received this help. table 7: disability: decision-making and assistance needed to undertake agricultural tasks. social norms and rules: both informal and formal legislation and policy nigeria and individual states have enacted laws to protect the rights and freedom of persons with disabilities and protect them from discrimination. such legislation and policies are only useful if they have been implemented and people are aware of their existence. awareness of such laws, for example, at the national level (the nigerian discrimination against persons with disabilities [prohibition] act, 2018) and at a state level such as the bauchi state disability bill law in this sample was low; 86.0% said they were not aware of any national or local laws. the presence of informal social norms may have an even more powerful influence on the lives of people living with disabilities. only 4.0% described discriminatory social norms in the context of managing agricultural activities, and when asked, ‘are there any other known social norms or informal rules in your community that prevent you from accessing the resources you need for your agricultural activities?’, 12 (1.1%) participants said yes. however, when asked about wider discrimination in their communities, participants reported that they faced discrimination of varying types and in various places in their communities, including places of worship, markets and work environments. participants felt that people without disabilities assumed degrading stereotypes when engaging with them, because they were accustomed to seeing people living with disabilities begging or being idle on the street in their communities. discussion this article reports the findings of a survey questionnaire that sought to understand the role and experiences of people living with disabilities engaged in agricultural activities in northern nigeria. the findings suggest that both male and female participants in the study experienced various barriers related to economic outcomes and sociocultural experiences. social and demographic characteristics of our participants differed in some parts from the reviewed literature on farmers living without any disability (e.g. ogunlela & mukhtar 2009; ojiako et al. 2014), for example, our participants reported religious, specifically islamic, education as their highest educational qualification, followed by no formal education. most participants reported living with family at home with support from unpaid caregivers (i.e. partners, family and friends). this reinforces previous literature suggesting that despite the discrimination against persons with disabilities (prohibition) act, 2018, social care provision in nigeria remains largely unchanged and mostly provided by families (see sango 2017), with no funding from the government. several studies (e.g. malli et al. 2018; murphy et al. 2007) have illustrated how limited funding and unpaid caregiver’s (family) responsibilities can negatively impact the well-being and careers of people living with disabilities. similar to ojiako et al. (2014); ogunlela and mukhtar (2009) there were more male than female participants in our study, even though some evidence (e.g. imonikebe 2010; world bank 2009) suggests that women do make up most farmers in lmic but that women remain invisible because they face more barriers than men in most aspects of agriculture. our findings further corroborate literature reviewed (e.g. farnworth et al. 2020) involving farmers living without disabilities in the context of gendered crop choices, where more male participants were involved in crop farming, livestock rearing and input dealing than women, who were more involved in agro-processing and animal health work than male participants. it could be argued that our findings also shed light on issues of intersectional barriers faced by female farmers living with disabilities. these seem to be highlighted by more male participants than female participants in our study reporting being breadwinners and holding family and community leadership roles. likewise, more male participants attended primary, secondary and tertiary formal education than female participants, who were more likely to have undertaken islamic education or received no formal education. other obstacles relate to what has been termed ‘customary’ discriminatory practices against women, for example, ownership of assets, the ownership of land and of bank accounts (see imonikebe 2010; ogunlela & mukhtar 2009; sheahan et al. 2014; sommo & chaskes 2013). findings from our ppi suggested that participants experienced high levels of poverty. this reinforces other data suggesting that people living with disabilities are among the most economically disadvantaged internationally (see ofuani 2011) and the presence of a mutual relationship between poverty and disability (e.g. banks & polack 2014; groce et al. 2011; mitra et al. 2013). most of our participants were involved in agriculture for livelihoods and ‘survival’, thus highlighting how agriculture has the potential to help alleviate poverty experienced by people living with and without disabilities, living in rural communities (aranda-jan 2021; nbs 2012). our findings also corroborate other findings (e.g. ogunlela & mukhtar 2009; ojiako et al. 2014) in the context of access to financial services, where most of our participants were not aware of such financial services that could assist their agricultural activities, as many of our participants relied on informal loans through families. furthermore, participants reported that the type of agriculture and other related activities they could undertake without assistance was limited by their impairment. moreover, as found in other research (e.g. ojiako et al. 2014), the country would benefit from more focus on inclusive agricultural programmes, equipment and practices to empower and move individuals away from poor conditions by accessing opportunities and services guaranteed by law (i.e. the discrimination against persons with disabilities (prohibition) act, 2018), such as education and employment. these findings emphasise the need for and importance of empowering people living with disabilities to be aware of their rights, empowering them with knowledge, practical employability and entrepreneurial skills and assistance, such as wheelchairs, walking sticks, basic spectacles, simple hearing aids and accessible agricultural equipment to become socially and economically independent (see tsengu, brodtkorb & almnes 2000). education and employment (including self-employment) play crucial roles for achieving positive economic outcomes for people living with disabilities. economic participation in the form of employment (e.g. employment, supported employment and self-employment) not only improves financial independence of people living with disabilities but is also likely to improve their self-esteem and quality of life (sango & forrester-jones 2017). this is especially because exclusion from economic and livelihood opportunities can negatively impact the psychosocial well-being and identity of those living with disabilities (waddell & burton 2006). limitations limited data were collected that enabled potential differences that may be associated with urban or rural living to be explored. in addition, the perceived causation of disability did not explore in detail some important factors, such as genetic or accidental causation, which may guide the development of preventive policy. our study included more male than female participants because more male farmers living with disabilities were found across the study location; therefore, future research in this area could benefit from purposefully including an equal number of female and male farmers. conclusion and recommendations this research explored the lived experiences of people living with disabilities involved in agricultural activities in northern nigeria. it examined the types of opportunities available for farmers living with disabilities, including access to financial services, ownership of assets, decision-making, inclusive participation and social and cultural issues. the outcomes of this research are particularly important for strategy development for disability-inclusive agricultural and entrepreneurship programmes in northern nigeria, such that people with disabilities are able to maximise economic empowerment opportunities that guarantee increased income and better livelihoods. to support this, the authors recommend the following: increased partnership between agricultural development interventions with dpos and rights-based organisations in the design and implementation of agricultural and entrepreneurship programmes targeting people with disabilities. intervention activities should be designed in such a way that they are accessible to people living with disabilities. part of such a strategy is outreach activities specifically targeting farmers living with disabilities and training of project-implementing staff on disability inclusion strategies. increased synergy between agricultural development interventions and key private sector players to invest more in programmes supported with evidence-based research that function to intersect gender and disability in both conflict and post-conflict areas. such synergies have huge potential for stimulating increased participation and employment opportunities, building skill sets and engendering entrepreneurship among people living with disability, ultimately improving their livelihoods. agricultural development interventions can facilitate linkages between dpos and farmers’ groups or cooperatives as a strategy for people living with disabilities to actively engage in farming and other related agribusinesses. in this way, farmers living with disabilities can better organise into producer groups through which they can acquire essential production inputs and receive support from various institutions, including banks and relevant institutions. facilitate linkages between financial institutions with both farmers and people living with disabilities that engage in agricultural activities. this way, individuals can better maximise amongst the several agricultural financing schemes targeting smallholder farmers within their communities. this may include boa, bank of industry (boi), central bank of nigeria (cbn) and relevant mfis supporting agricultural and entrepreneurship financing within the communities. disability-friendly tools and equipment will play a major role in terms of ease of wider and varied access and participation for farmers living with disabilities involved in agricultural activities. acknowledgements the authors would like to acknowledge the international school of disabilities studies team, propcom mai-karfi management team and the african centre for innovative research and development (afri-cird) team for designing the study. they would also like to thank professor ibrahim kyauta from the special education department, bayero university, kano (buk) for his technical role and support through the data collection process of the study as well as the, afri-cird’s research assistants (ras) and state supervisors (sps) for collecting the data reported in this article. in addition authors would also like to thank all the participants who voluntarily took part in the study, the religious and community leaders and disabled people’s organisation who facilitated the process of data collection. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contribution p.n.s. in consultation with r.d., m.b., k.g., b.b., h.k.a. and m.n.a. designed the study. m.b. contributed to data collection. p.n.s. and r.d. wrote the manuscript and m.b., k.g., b.b., h.k.a. and m.n.a. reviewed and revised aspects of the articles; all authors approved the final version of the work. funding information the authors would like to acknowledge dfid (now foreign, commonwealth & development office [fcdo]) for funding the project, which yielded the findings reported in this article, and special appreciation to palladium/propcom mai-karfi for commissioning the study. data availability data collected from the study can only be made available to editors and reviewers subject to approval from propcom mai-karfi, palladium and fcdo. disclaimer the view and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of dfid (now fcdo), palladium and propcom mai-karfi or any affiliated agency of the authors. references abang, t.b., 1988, ‘disablement, disability and the nigerian society’, disability, handicap & society 3, 71–77. https://doi.org/10.1186/s40854-018-0112-2 abraham, t.w., 2018, ‘estimating the effects of financial access on poor farmers in rural northern nigeria’, financial innovation 4(1), 1–20. https://doi.org/10.1080/02674648866780061 acharya, s.s., 2006, 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about the author(s) marieta visser department of occupational therapy, faculty of health sciences, university of the free state, bloemfontein, south africa mariette nel department of biostatistics, faculty of health sciences, university of the free state, bloemfontein, south africa caretha bronkhorst department of occupational therapy, faculty of health sciences, university of the free state, bloemfontein, south africa lara brown department of occupational therapy, faculty of health sciences, university of the free state, bloemfontein, south africa zaskia ezendam department of occupational therapy, faculty of health sciences, university of the free state, bloemfontein, south africa kira mackenzie department of occupational therapy, faculty of health sciences, university of the free state, bloemfontein, south africa deidré van der merwe department of occupational therapy, faculty of health sciences, university of the free state, bloemfontein, south africa marné venter department of occupational therapy, faculty of health sciences, university of the free state, bloemfontein, south africa citation visser, m., nel, m., bronkhorst, c., brown, l., ezendam, z., mackenzie, k., van der merwe, d. & venter, m., 2016, ‘childhood disability population-based surveillance: assessment of the ages and stages questionnaire third edition and washington group on disability statistics/unicef module on child functioning in a rural setting in south africa’, african journal of disability 5(1), a265. http://dx.doi.org/10.4102/ajod.v5i1.265 original research childhood disability population-based surveillance: assessment of the ages and stages questionnaire third edition and washington group on disability statistics/unicef module on child functioning in a rural setting in south africa marieta visser, mariette nel, caretha bronkhorst, lara brown, zaskia ezendam, kira mackenzie, deidré van der merwe, marné venter received: 10 feb. 2016; accepted: 21 june 2016; published: 26 sept. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: epidemiological information on childhood disability provides the basis for a country to plan, implement and manage the provision of health, educational and social services for these vulnerable children. there is, however, currently no population-based surveillance instrument that is compatible with the international classification of functioning, disability and health (icf), internationally comparable, methodologically sound and comprehensively researched, to identify children under 5 years of age who are living with disability in south africa and internationally. we conducted a descriptive pilot study to investigate the sensitivity and specificity of translated versions of the ages and stages questionnaire third edition (asq-iii) and the washington group on disability statistics/unicef module on child functioning (wg/unicef module) as parent-reported measures. the aim of our study was to identify early childhood disabilities in children aged 24–48 months in a rural area of south africa, to determine the appropriateness of these instruments for population-based surveillance in similar contexts internationally. methods: this study was conducted in the xhariep district of the free state province in central south africa, with 50 carers whose children were registered on the south african social security agency (sassa) database as recipients of a grant for one of the following: care dependency, child support or foster care. the researchers, assisted by community healthcare workers and sassa staff members, conducted structured interviews using forward–backward translated versions of the asq-iii and the wg/unicef module. results: both measurement instruments had a clinically meaningful sensitivity of 60.0%, high specificity of 95.6% for the asq-iii and 84.4% for the wg/unicef module, and the two instruments agreed moderately (kappa = 0.6). conclusion: since the wg/unicef module is quicker to administer, easier to understand and based on the icf, it can be considered as an appropriate parent-reported measure for large-scale, population-based as well as smaller, community-specific contexts. it is, however, recommended that future research and development continues with the wg/unicef module to enhance its conceptual equivalence for larger-scale, population-based studies in south africa and internationally. introduction early childhood development plays a vital role in health and social outcomes and forms the basis of human capital (grantham-mcgregor, cheung, cueto, glewwe, richter, strupp. 2007; heckman & mosterov, 2007; wadsworth & butterworth 2005). internationally, there is a call for professionals, parents and policy makers to renew their focus on early childhood development (britto, yoshikawa & boller 2011; irwin, siddiq & hertzman 2007; regalado & halfon 2001; richter et al. 2014; south african human rights commission/unicef 2011). developmental delays and disabilities prevent millions of children from achieving their optimal potential (grantham-mcgregor et al. 2007; walker et al. 2007). in 2004, 93 million children (0.5% of the children in the world), 14 years of age or younger, lived with a moderate or severe disability of some kind (unicef 2013). more recently, it has been found that internationally, more than 200 million surviving children have developmental delays or disabilities (scherzer et al. 2012). statistically sound epidemiological information is imperative in order to implement and manage the provision of health, educational and social development services for these children (hack et al. 2005). however, noticeable discrepancies between countries’ data sets, different and often non-comparable survey methods and insufficient epidemiological information on childhood disability represent three problems that are of global concern (elwan 1999; unicef 2013; who 2014). moreover, in developing nations such as south africa, evidence regarding children with disabilities is often unreliable and unavailable (african child policy forum [acpf] 2011; unicef 2012; who 2002). reasons for this lack of reliable childhood disability statistics include, firstly, that there are obvious discrepancies between the results obtained from the questions and methods used in population-based surveys such as the national census (statistics south africa 2003), general household surveys (statistics south africa 2010, 2013), community surveys, multiple indicator cluster surveys (mics) (unicef 2012), global burden of diseases (gbd) studies and world health surveys (whs), to name a few (elwan 1999; health systems trust 2011; unicef 2013). secondly, numerous countries focus on evidence regarding adults, as clearly observed in surveys such as the gbd and whs (including in the 2011 south african national census). consequently, children younger than 5 years have been excluded, resulting in insufficient current statistical data regarding the prevalence of early childhood disabilities internationally (statistics south africa 2014a). possible causes for the threefold problem mentioned above may include (1) the complexity of the term ‘disability’ (molden & tøssebro 2012), (2) the difficulty in detecting disabilities of children under 5 years (molden & tøssebro 2012) and (3) the lack of a population-based surveillance instrument that is compatible with the international classification of functioning, disability and health (icf) (who 2007), internationally comparable, methodologically sound and comprehensively researched, to identify disabled children under 5 years of age living in south africa and internationally (elwan 1999; madans, loeb & altman 2011). the consequence of not having the appropriate surveillance measures required to detect childhood disability (for smaller, population-based studies or large census surveillance) is that no internationally comparable epidemiological information can be obtained. such epidemiological data form the basis for countries to plan, implement and manage their provision of health, educational and social services, inform appropriate guiding policy initiatives and address social justice and human rights issues for these vulnerable children (hack et al. 2005). in order to comply with global guiding legislative and policy documents, various initiatives have been undertaken by organisations such as who, unicef and washington group on disability statistics (wg) (who 2011). as a result, an appropriate measurement instrument, based on the icf (adopted as the conceptual framework for the world report on disability (who & world bank 2011) and embodied in the united nations convention of rights of persons with disabilities) and called the washington group on disability statistics/unicef module on child functioning (wg/unicef module), has been developed (wg/unicef 2014). however, this instrument, developed to be internationally comparable and methodologically sound, had not (at the time of the research presented here) been fully vetted and finalised that would allow its suitability for various global contexts, for example, in south africa (wg/unicef 2014). as a member state of the united nations (un), south africa is held accountable for the provision of epidemiologically sound information regarding childhood disability in order to give effect to the convention on the rights of persons with disabilities (who 2011). although no population-based measurement question and/or measure to detect childhood disabilities is currently available, stats sa remodelled its approach to align their general household survey and national census 2011 questionnaires with the wg/unicef module to measure childhood disability (madans et al. 2011; statistics south africa 2014b). the outcome of this remodelling process could ensure future inclusion of previously excluded children under 5 years, in order to provide sound epidemiological information (department of social development/department of woman children and people with disabilities republic of south africa/unicef 2012). in order to manage childhood disabilities in south africa, there is a call for leadership from researchers, practitioners, governments and international organisations to fulfil their responsibility to understand and measure childhood disability, enabling every child to achieve his/her optimal potential (scherzer et al. 2012). theoretical overview childhood disability epidemiology according to the 2001 south african census, which included children under 5 years of age, 5% of the total population have some form of disability (acpf 2011; statistics south africa 2003). furthermore, 2.5% of children under 18 years and 1.6% of children under 4 years were reported to have a disability (acpf 2011; unicef 2012). a community survey conducted by statistics south africa (stats sa) in 2007 indicated that 0.9% of children under 4 years have a disability (health systems trust 2011). the general household surveys of 2008 and 2009 reported 0.6% and 11.2%, respectively, of the total child population as disabled. the prevalence of disability appeared unusually high for young children under 4 years (27.5%), and in the age group 5–9 years, 10% were classified as disabled (statistics south africa 2010, 2013; unicef 2012). it is argued that these discrepancies in national data could be ascribed, firstly, to the variety in the questions of the population-based surveys used to determine disability (molden & tøssebro 2012). secondly, the child mortality rate in south africa of 47 per 1000 live births of children under 5 years – ‘the probability of dying by age five expressed as the total number of such deaths per 1000 live births’ (who 2013:22) – might falsely portray low childhood disability prevalence (naledi, barron & schneider 2011). thirdly, mild-to-moderate disabilities may be detected only once a child enters primary school or even as late as secondary school in some cases (naledi et al. 2011). lastly, the complexity of the term ‘disability’ and the use of different types of wording to ask about disability have been identified as a primary reason for large discrepancies in epidemiological information on childhood disability between countries (schneider 2009). disability is a complex phenomenon which cannot be captured in a single definition. it is defined, according to the icf, as ‘an outcome of the interaction of a health condition and the context of the person with the health condition’ (schneider, barron & fonn 2007:273). the outcome of the interaction is described at three levels of functioning, namely the body, the person and society (schneider et al. 2007; who 2001). this definition is in agreement with the biopsychosocial model of health, which suggests that one should look at both the individual and the environment when a person’s experience of disability is described accurately and comprehensively (duncan et al. 2009). comparability of international and national epidemiological information could be improved, if the above definition and perspective are adopted and used in measurement instruments by all member countries of the un. the implications of this for population-based surveys would be to incorporate questions covering all icf levels of functioning. however, in the self-reported context, as is the case in censuses and general household surveys, it is important to select a level of functioning that a person can report on most accurately. this selection of a level of functioning has been identified as being the ‘person level’ of activity (schneider et al. 2007; who 2001) as reflected in the census and surveys developed by the wa and south african researchers (schneider et al. 2009). in addition to epidemiological information, population-based surveys can also serve as an effective way to detect developmental delays and/or disabilities in young children. research strongly suggests the use of surveys such as parent-reported screening instruments (glascoe & marks 2011). parent-reported measures can also be applied as an early detection method in rural communities that do not have access to specialised treatment (scherzer et al. 2012). it has been recognised, however, that although population-based surveys can provide valuable epidemiological information, it remains important for a country to also incorporate early assessment and treatment into routine paediatric care programmes to ensure that basic health needs and human rights are met (scherzer et al. 2012). if such paediatric care programmes had been in place in south africa, the health sector’s over-investment in remediation of established disabilities at later ages and under-investment in health promotion through the early detection of disability could have been corrected (heckman 2007). measurement instruments ages and stages questionnaire third edition the earlier that intervention programmes are implemented for a child with disability, the better the potential benefit (engle et al. 2007; grantham-mcgregor et al. 2007). furthermore, early detection, support and treatment have positive effects on affective, cognitive, motor and social development (scherzer et al. 2012). there is clear evidence for the effectiveness of screening for a number of conditions, many of which are readily detectable in the neonatal period (oberklaid, wake, harris, hesketh & wright. 2002). developmental screening is described as a brief systemic process where delays are identified in children to determine whether further assessment is required (rydz et al. 2006). surveillance, however, is an ongoing, accumulative process enabling healthcare workers to detect early childhood developmental delays and/or disabilities (committee on children with disabilities 2001). of the many available parent-reported measurement instruments, the ages and stages questionnaire third edition (asq-iii) and the wg/unicef module were selected for this study. although there are no other known population-based, parent-reported survey instruments compatible with the icf other than the wg/unicef module, instruments such as the ten question screen (tq), ten question plus (tqp) and the malawi developmental assessment tool (mdat) (gladstone et al. 2010) have been used in several population-based studies (durkin, davidson, desai, hasan, kahan, shrout. 1994; ibrahim & bhutta 2013; wu et al. 2010). the tq has been used in mics between 2000 and 2010 and identified as a rapid, low-cost screening instrument (unicef 2013). the tq is sensitive to identify serious cognitive, motor and seizure disability, but not vision and hearing disability (durkin et al. 1994; maulik & darmstadt 2007), and it requires follow-up medical and developmental assessment to confirm disability. more clinical developmental measurement instruments, often used to confirm disability identified in surveillance, include the bayley scales of infant development (rademeyer 2010) and the denver developmental screening test (gladstone et al. 2008). the asq-iii has been standardised on children aged from one month to five-and-a-half years in the usa (squires et al. 2009). the asq-iii is a clinical-based, parent-reported instrument to determine a child’s developmental milestones, and consequently, to identify developmental delays (squires et al. 2009). the asq-iii contains simple questions that require the primary carer to select the most appropriate response based on previous observations of the child’s ability or inability to perform daily activities expected of the specific age group (tsai et al. 2006). the instrument consists of five domains, namely communication, grossand fine motor, problem-solving and personal–social (tsai et al. 2006). this screening and surveillance instrument is considered cost-effective and appropriate for developing countries with low socioeconomic climates (gollenberg et al. 2009; squires et al. 2009). it is, however, important to consider translation and development of conceptually equivalent versions for each specific population because some of the questions involve culture-specific concepts. it can be used to survey large numbers of children, but the administration thereof can prove time-consuming (rydz et al. 2006). previous versions of the asq have been researched in other studies, occasionally in combination with other measures such as the tq, parents’ evaluation of developmental status (peds) and the bayley scales of infant development ii/bsid ii (gollenberg et al. 2009; limbos & joyce 2011). as reported by gollenberg et al. (2009), the asq-iii has a sensitivity of 75% and a specificity of 86%. however, no studies using the asq-iii in a rural south african context have been documented yet. the washington group on disability statistics/unicef module on child functioning the wg, in partnership with unicef and other stakeholders, has been working with the aim to improve the quality and international comparability of disability measures suitable for censuses and national surveys (madans et al. 2011; madans & loeb 2013; wg/unicef 2014). the questions formulated to identify disability in adults have been finalised and used in several countries, including in the south african census (madans et al. 2011; madans & loeb 2013). the current focus of the wg/unicef module is on developing a measurement instrument for children based on the icf, which is presently in the piloting phase in various countries (guzman & salazar 2014). the most current, pre-final version (called the 2013 wg/unicef module on child functioning) used in this study is a screening instrument that can be used for children between 2 and 17 years, which is a parent-reported measure developed for population-based surveillance, and it consists of seven domains, namely seeing, hearing, communication/comprehension, walking, learning, behaviour and playing (wg/unicef 2013). to date, limited research has been carried out with regard to sensitivity and specificity of the 2013 wg/unicef module (madans et al. 2011; madans & loeb 2013), especially in a south african setting (statistics south africa 2013). aim of the study because there is no measurement instrument standardised for the south african population to address this need, the united nations development programme south africa, in conjunction with the department of women, children and people with disability (dwcpd), released a procurement notice. it advises stats sa to develop a module to measure disability among children aged 0–4 years, for future inclusion in the general household surveys and the national census (statistics south africa 2014b). in response to notice, stats sa has remodelled their work to align it with wg/unicef module framework and their module under development (statistics south africa 2014b reference). the ‘gap’ identified in research is that there are no comparable, international or national, population-based childhood disability measures that are methodologically sound and compatible with the icf (elwan 1999; madans et al. 2011). this situation consequently leads to a paucity in epidemiological information, compromising the effective healthcare management of all children (madans et al. 2011). the question arose as to whether the wg/unicef module is sensitive and specific enough as a population-based surveillance instrument to identify children below 5 years of age living with disabilities in a rural context of a developing country such as south africa. as a result, aligned with international work conducted by the wg and national initiatives of stats sa in the field of population-based surveillance, the authors aimed to report on a pilot study that investigated the sensitivity and specificity of translated versions of the asq-iii and the wg/unicef module as parent-reported measures, to identify early childhood disabilities in children 24–48 months, in a rural area of south africa (free state, xhariep district) to determine their appropriateness for population-based studies in similar contexts. methods the study used a descriptive design. ethical clearance was obtained from the ethics committee of the faculty of health sciences at the university of the free state (ecufs stud. no. 14/2014), and permission was given by the xhariep district municipal offices in trompsburg, the regional offices of sassa in bloemfontein, the respective publishers and developers of the measurement instruments and consent was obtained from the participants. the study was implemented in six towns in the kopanong municipal area situated within the xhariep district. this setting is defined as rural, and here large socioeconomic inequalities prevail; a large majority of the population is unemployed, has low socioeconomic status, is poorly educated and relies almost exclusively on the poorly resourced public health services (david, tavasci & marais 2006; lehohla 2002). this area is therefore representative of many others in south africa and other developing countries. the population for this study was identified as follows: (1) a heterogeneous group of primary carers (residing in the same household as the child); (2) of children, aged 24–48 months; (3) from the xhariep district; (4) proficient in afrikaans, english or sesotho; and (5) receiving one of the social grants paid by sassa. these grants include (1) the child support grant (csg) introduced in 1998 to help alleviate income-poverty experienced by many children between birth and 18 years in south africa (dlamini, ntuli & petersen 2012–2013); (2) a foster care grant (fcg) for children ordered by the court to remain in the care of foster parents (hall & proudlock 2010); or (3) the care dependency grant (cdg) for children between the age of 1 and 18 years who have mild/severe disabilities and require permanent care from a carer (dlamini et al. 2012–2013). the type of social grant received by the primary carers (in this study specifically a cdg or not) was considered to be the gold standard for this study. a more direct (hands-on), expert clinical assessment of each child would have been a more ideal approach, which, because of financial and time constraints, was not possible. the cdg, however, is based on a comprehensive medical examination to confirm the child’s disability status, and therefore this was deemed appropriate for the purpose of this study. furthermore, the data regarding the sassa recipients were easily accessible, without charge and not reliant on clinicians. it is important to note that although the fcg assumes a child to be typically developed, it does not exclude children with mild disabilities, which are often not as apparent and therefore not detected until later years (mathews et al. 2014). non-probability convenience sampling was used to identify the sample population of 50 primary carers. a list of beneficiaries in the xhariep district was obtained from the regional offices of sassa in bloemfontein in 2014. these social grant beneficiaries on their database were primary carers with typically developed children (indicated by a csg and an fcg) and those with children with a disability (indicated by the cdg) between the ages of 24 and 48 months. because of an unexpected, small number of children on the initial sassa database, the study population consisted of all the primary carers registered either on the regional or the district sassa system to receive either one (or more) of the three above-mentioned grants. this sample represents this vulnerable population dependent on social security grants in order to support their children. because of time and financial constraints, only the 24–48 month sections of the asq-iii and wg/unicef module’s questions were translated and accordingly became the age group focussed on in this study. a community health worker or sassa representative in each of the identified towns assisted with locating participants. data collection procedures took place at multipurpose centres, including community halls, local crèches and sassa branches in the xhariep district. although different venues were used, a standard setup controlling external factors was exercised by the researchers to warrant reliability. the researchers were paired into three subgroups where prescribed roles and responsibilities were maintained. within these subgroups, one researcher conducted the structured interview, while the other recorded the responses on the respective data forms and assisted the child where needed, in order to allow the carer to focus on the interview. prior to the structured interviews, information was given to the carer regarding this study and informed consent was obtained. the importance of answering all questions truthfully was explained to the participants, and they were ensured that the information would be kept strictly confidential. structured interviews based on parent-reported questionnaires in the participants’ preferred language (sesotho, english or afrikaans) were conducted to ensure consistency and compensate for illiteracy. the structured interviews varied between 20 and 30 minutes, limiting the effect of fatigue on the carer’s concentration span. the child remained under the supervision of the carer in order to attend to their basic needs (such as diaper change, hunger or thirst). during the structured interviews, the procedures were to obtain demographic information, conduct the wg/unicef module, followed by the asq-iii, and capture responses. in the case where the asq-iii and/or the wg/unicef module detected developmental delays or disability, and the child was not already on a cdg (indicating disability), the carers received feedback and were referred to the appropriate public healthcare services. for the purpose of this study the demographic questionnaire provided information regarding grant type, preferred language, age and educational level of the carers. because of the multilingual context of the study setting, forward–backward translations of the asq-iii and wg/unicef module to afrikaans and sesotho were completed to accommodate all participants. the forward–backward translation process aimed to allow the participants to better understand the questions in their preferred language. after three interviews were performed, it was found necessary to adjust the length of the questions, simplify the vocabulary and substitute examples with more culturally relevant concepts than those used in the asq-iii. the data analysis was performed by the department of biostatistics, university of the free state. descriptive statistics, namely frequencies and percentages for categorical data, and medians and percentiles for continuous data, were calculated. sensitivity, specificity, positive and negative predictive values (ppv and npv) and likelihood ratios were calculated by comparing the scores obtained on the parent-reported questionnaires to the type of social grant received by the primary carers. these calculated values are described by means of 95% confidence intervals (cis). furthermore, the youden index, a diagnostic tool, was also used to determine the superior measurement instrument (hawass 1997). kappa was calculated to describe the agreement between asq-iii and wg/unicef module, with 95% ci for kappa. results and discussion the sample consisted of 50 primary carers, of which 5 were recipients of the cdg (indicating a child with disability), while the remaining 45 were recipients of either a csg or an fcg. the small sample size (reflected by the wide cis in table 1) was a limitation of this study and could be attributed to the limited resources and time constraints. however, this was a pilot study forming part of a larger, proposed rural birth-cohort study. table 1: ages and stages questionnaire third edition and the washington group on disability statistics/unicef module calculated diagnostic accuracy parameters. the carers’ ages ranged from 20 to 65 years, with a median age of 29.5 years. the relationship of the child to the carer comprised 36 mothers, 13 grandparents/other relatives and 1 foster parent. most of the children referred to in the questionnaires were male (62%). regarding the educational level of this population (table 2), the majority (n = 38; 76%) had some level of secondary school education. approximately one-third of the carers (n = 17; 34%) had obtained the grade 12 national senior certificate, opposed to only four (8%) who had no formal education at all. table 2: educational level of the carers (n = 50) of children with disabilities. despite the fact that the carers were predominantly sesotho-speaking, the majority preferred to participate in the study in either afrikaans (n = 31; 62%) or english (n = 18; 36%). only one interview was conducted in sesotho through the use of a translator. it was evident, however, during the present study that the wg/unicef module’s questions were easily understood, as compared with the questions and terminology of the asq-iii that were not always clearly understood. therefore, the asq-iii questions were reduced to the core concept and asked in a more direct manner. furthermore, predetermined demonstrations and culturally appropriate examples were consistently provided in order to facilitate better understanding of concepts. for example, threading macaroni onto a string (when macaroni is uncommonly used for anything other than consumption among these participants) was consistently replaced by threading beads onto a string, which was demonstrated. according to the developers of the asq-iii, the language used to formulate the questions had been based on a grade 6 level in the usa (squires et al. 2009), as compared with the educational level of the participants of whom 76% had completed at least grade 7. thus, it may be of value for qualitative research to further develop these questions into conceptual equivalent versions for the south african population. with regard to the specific question ‘ease of questionnaire’, the majority of the carers in our study found the asq-iii (89.8%) and wg/unicef module (94%) easy to answer and complete, which is similar to the results in other studies (rydz et al. 2006). the reason for the few carers in our study that struggled to understand these questions could be because of the complexity of ‘not knowing how to respond’, or based on a different understanding and interpretation of terms, often found when conceptual equivalence of terms has not been established for a specific population (schneider 2012). perhaps in this study the concept and wording of the specific question ‘ease of questionnaire’ were misinterpreted or misunderstood and instead testified as their ‘knowledge of the child’ (rydz et al. 2006), which emphasises the importance of further research. according to altman and bland (1994), sensitivity is ‘the proportion of true positives that are correctly identified by the test’, while specificity is defined as ‘the proportion of true negatives that are correctly identified by the test’. for a good test, both sensitivity and specificity must be high when compared with the gold standard. these values showed that both the measurement instruments are specific, although not as sensitive. a positive predictive value (ppv) is the proportion of children who are identified by the measurement instruments as having a disability and who are, therefore, correctly classified as cdg recipients. a npv is the proportion of children who do not have a disability (typically developed) and who received either a csg or an fcg (altman & bland 1994). the ppvs of the asq-iii and the wg/unicef module were 60.0%, while the npv of the asq-iii was 95.6% and that of the wg/unicef module was 84.4%. the asq-iii has been designed as a more clinical measure, used to measure developmental milestones of typically developed children and to identify developmental delays (gollenberg et al. 2009; limbos & joyce 2011; squires et al. 2009). the present study has revealed its potential use also for identifying childhood disabilities, given its clinical useful score of 60% for sensitivity (identifying children with disability) and a high score of 95.6% for specificity (identifying typically developed children). this study has therefore confirmed the additional use of the asq-iii scantily reported in the literature and the value of further exploring it in future (tsai et al. 2006). the asq-iii was the better test, with the highest youden index value (hawass 1997). the wg’s current focus is on finalising the wg/unicef module as a measurement instrument for children based on the icf (wg/unicef 2014). the wg/unicef module has been cognitively tested in mumbai (india), montenegro, belize, oman and the usa. field testing is ongoing and data are currently being analysed from field tests in mexico, el salvador, samoa and serbia (wg/unicef 2014). the present study reports on an initial attempt to contribute to the work of the wg on an international level. evidence of this study shows a sensitivity of 60% and specificity of 84.4%, and although no literature is yet available to verify whether or not these results are in line with other wg/unicef module studies, it agrees moderately (asq-iii vs wg/unicef module: kappa: 0.62 [0.32; 0.91]) with the asq-iii measure, which indicates a potentially high level of usefulness for large-scale, population-based surveillance purposes (schneider et al. 2009; wg/unicef 2014). it also holds promise as a preliminary screening tool for smaller-scale, community-specific surveillance investigations. the wg/unicef module does not require the same professional skills and question clarification to administer as the asq-iii but yields results close to a clinical instrument. the advantages of the wg/unicef module are that it can be administered by non-clinical staff, and a particular feature is that in our study, it revealed promising results even for a rural, low socioeconomic, relatively limited educated population (wg/unicef 2014). this feature is of particular importance for public health surveillance in south africa, because it is precisely those populations who are fully reliant on state-funded medical services. our results regarding parent-reported measures have reflected the value of involving the carers during early childhood developmental (ecd) screening for future clinical, community-specific and population-based surveillance (rydz et al. 2006). the ‘parent-reported’ information provided results without the need of a ‘hands-on’ clinical professional, yielded quick results and gave an accurate perspective regarding the child and was not dependent on the cooperation of the child on that day. although both the instruments are parent-reported and appropriate for children under 5 years of age, the wg/unicef module (the more population-based measure) as compared with the asq (more clinically oriented measure) has the same sensitivity (60%) and approximately the same specificity, indicating moderate agreement. because the wg/unicef module is quicker to administer, easier to understand and based on the icf, although becoming available in its final format (wg 2014) only recently, it can be considered as an appropriate population-based measure for similar contexts in south africa and internationally. our results verified that both the measurement instruments were specific in terms of identifying children without disabilities, although not as sensitive in identifying children with disabilities. the implication is that children without disabilities are confirmed as such and those with disabilities are not as consistently detected. this lower sensitivity rate should therefore be considered in future population-based studies, and possible accommodations should be considered, such as making use of more than one parent-reported instruments and including/verifying the parent information with the social grant information if available. conclusion this pilot study is the first of its kind conducted in south africa to address the gap in parent-reported measures in the field of population-based surveys to identify disabilities in children under 5 years of age. our findings provide useful information for stats sa for the development of questions stats sa intends to include, aligned with the wg/unicef module, in its next census in 2021, which will enable stats sa to capture the extent of disabilities of children under 5 years of age, information that has not been reported in the official figures from the 2011 census. not only will it help to inform the national institutions responsible for providing support to these children, but in addition, it could provide stats sa with internationally comparable statistics on childhood disability. it is recommended, however, that future research and development continue with the wg/unicef module to enhance its conceptual equivalence and sensitivity for future larger-scale, population-based studies in south africa and internationally. by the development of sound measures, internationally comparable and compatible with the icf, we can obtain reliable statistical epidemiological information leading to better management and provision of services to children under 5 years of age living with disabilities, and giving every child the opportunity to achieve his/her optimal potential. acknowledgements we would like to thank dr marguerite schneider, uct, for expert advice and dr daleen struwig, faculty of health sciences, ufs, for technical and editorial preparation of the manuscript. competing 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http://apps.who.int/gb/ebwha/pdf_files/wha67/a67_16-en.pdf who & world bank, 2011, world report on disability, who, geneva, viewed 20 march 2014, from www.who.int/disabilities/world_report/2011/report.pdf wu, l., katz, j., mullany, l.c., haytmanek, e., khatry, s.k., darmstadt, g.l. et al., 2010, ‘association between nutritional status and positive childhood disability screening using the ten questions plus tool in sarlahi, nepal’, journal of health, population and nutrition 28(6), 585–594. http://dx.doi.org/10.3329/jhpn.v28i6.6607 abstract introduction research methods and design results discussion conclusion acknowledgements references footnote about the author(s) jill hanass-hancock gender and health research unit, south african medical research council, durban, south africa school of health science, university of kwazulu-natal, durban, south africa ayanda nzuza gender and health research unit, south african medical research council, durban, south africa samantha willan gender and health research unit, south african medical research council, durban, south africa thesandree padayachee gender and health research unit, south african medical research council, durban, south africa mercilene machisa gender and health research unit, south african medical research council, pretoria, south africa bradley carpenter school of health science, university of kwazulu-natal, durban, south africa gender and health research unit, south african medical research council, cape town, south africa citation hanass-hancock, j., nzuza, a., willan, s., padayachee, t., machisa, m. & carpenter, b., 2024, ‘livelihoods of young women with and without disabilities in kwazulu-natal during covid-19’, african journal of disability 13(0), a1400. https://doi.org/10.4102/ajod.v13i0.1400 original research livelihoods of young women with and without disabilities in kwazulu-natal during covid-19 jill hanass-hancock, ayanda nzuza, samantha willan, thesandree padayachee, mercilene machisa, bradley carpenter received: 10 jan. 2024; accepted: 22 may 2024; published: 19 july 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: persons with disabilities are more likely to have poorer livelihood outcomes, including food insecurity. inequalities are heightened for young women with disabilities, especially in times of crisis. objectives: to understand the livelihood experience of young south african women with and without disabilities during the coronavirus pandemic (covid-19). method: we conducted a longitudinal study with 72 young women with and without disabilities enrolled in tertiary institutions in ethekwini, south africa. we undertook a series of in-depth interviews collecting quantitative and qualitative data, prompting participants’ experiences during the covid-19 pandemic, including living arrangements, impact on education, access to resources and food security. results: participants reported livelihood changes related to living arrangements, education, income, and social connectedness during the pandemic. social grants (old-age pension, child support, disability grant) and student stipends were critical financial resources to ensure food security. participants with disabilities were more likely to experience food insecurities and moderate hunger, with their households having less access to mitigating resources such as land or livestock. deaf participants also reported social isolation. conclusion: the study shows that social protection mechanisms mitigated the financial impact of the lockdown for all recipients but that participants with disabilities still struggled more than others to ensure food security. these additional challenges may be related to pre-existing inequalities, with participants with disabilities and their households having less access to natural resources and financial stability. contribution: this paper focuses on young women with and without disabilities and provides insight into the similarities and differences in their experiences. keywords: disability; livelihoods; covid-19; south africa; food security; crisis; pandemic. introduction the sustainable development goals (sdgs) of the 2030 agenda serve as a ‘shared blueprint’ and framework to guide countries and communities to achieve inclusive development for all (united nations general assembly 2015). sustainable development goals 1 and 2 focus on ending poverty and hunger and include disaster management to ensure sustainable livelihoods for all (our world in data team 2023; united nations department of economic and social affairs 2023). the sdg agenda’s pledge ‘to leave no one behind’ focusses on marginalised groups such as persons with disabilities. disability-inclusive development requires participatory and inclusive approaches that include persons with disabilities as active participants and account for their abilities and vulnerabilities. literature has established that persons with disabilities are more likely to live in poverty, experience food insecurities, and have higher opportunity and out-of-pocket costs than persons without disabilities (banks & polack 2015; mitra, posarac & vick 2013; mont et al. 2022; quarmby & pillay 2018; united nations department of economic and social affairs 2018). the socio-economic inequalities affecting persons with disabilities are also gendered. women with disabilities are more likely to experience poverty and food insecurity than men with disabilities (mitra & yap 2022; schwartz, buliung & wilson 2019; unfpa 2018; united nations department of economic and social affairs 2018). in south africa, persons with disabilities, particularly women with disabilities, earn less income and experience higher out-of-pocket costs (national department of social development 2015). the country has implemented social protection mechanisms to counteract these inequalities, such as disability grants and employment equity policies that protect persons with disabilities (and other disadvantaged groups) (hanass-hancock & mckenzie 2017; republic of south africa 1998). the recent coronavirus disease 2019 (covid-19) pandemic devastated people’s livelihoods, depleting many of their assets. reviewing the impact of the pandemic on sdgs, the international labour organisation (ilo) 2022 report on covid-19 revealed that worldwide poverty rates had increased for the first time in two decades from 6.7% in 2019 to 7.2% in 2020 (ilo 2022). the report also revealed that unemployment had increased and was projected to stay above pre-pandemic levels until at least 2023; that youth unemployment was increasing and access to education or training was a persistent struggle; that the progress in addressing gender inequalities stalled and that small and informal businesses were disproportionally affected (ilo 2022). hence, the pandemic depleted people’s assets and harmed their livelihoods and ability to meet basic needs such as food and shelter. globally, research revealed that disability-related inequalities widened during the covid-19 pandemic (banks et al. 2021; covid-19 disability rights monitor and brennan 2020; department of women, youth and persons with disabilities and united nations human rights 2021; mckinney et al. 2021; rohwerder et al. 2021; shaw et al. 2021; thompson et al. 2021; wickenden et al. 2021a, 2021b). several of these publications describe the severe breakdown in providing support for persons with disabilities, who were without access to necessities such as food and nutrition and pushed further into poverty; some were even excluded from the pandemic response and social protection measures. in addition, they had limited access to covid-19-related prevention and treatment information. this research also revealed that people with disabilities experienced significant barriers to accessing and receiving essential services such as healthcare. furthermore, survey analysis on food insecurity and disability during the pandemic in resource-rich settings revealed that households with persons with disabilities were more likely to experience food insecurities, were more impacted by the economic downturn and had higher levels of emotional distress (brucker, stott & phillips 2021; engelman et al. 2021; friedman 2021; sultana et al. 2023; turk & mitra 2021). in addition, women with disabilities, who were already more likely to experience social, economic and health disparities than men with disabilities or those without disabilities experienced even further inequality during the pandemic (covid-19 disability rights monitor and brennan 2020; unfpa 2021a). therefore, the pandemic may have affected young women with disabilities disproportionally as they may experience multiple intersecting marginalisations based on gender, age, race and disability. however, very little empirical research focussed on youth with disabilities during the pandemic in lowor middle-income countries and even less on young women with disabilities. one of the few studies revealed that youth with disabilities experienced additional stigma and discrimination, struggled to maintain their livelihoods and felt excluded from government responses (leonard cheshire 2021). the un 2020 report on the impact of covid-19 on women and girls with disabilities and the afrique rehabilitation and research consultants (arrc) report on the daily lives of adolescent girls and young women with disabilities both suggest that this group experienced barriers to accessing healthcare and education, including sexual reproductive health and rights (srhr) (arrc 2021; unfpa 2021a). despite this, we know little about how young women with disabilities experienced the pandemic, how it affected their livelihoods, how their experience differed from those without disabilities and whether protection mechanisms assisted them in navigating the crisis. south africa at the beginning of the pandemic in 2020, south africa implemented one of the strictest global lockdown measures (with stay-at-home orders, closure of businesses and restrictions on ‘non-essential’ health services). this strict lockdown was followed by different lockdown levels implemented until march 2022 (department of women, youth and persons with disabilities and united nations human rights 2021). the country also implemented various social security measures, including a small covid-19 social relief of distress cash transfer of zar350 (usd20), food parcels and tax breaks (department of women, youth and persons with disabilities and united nations human rights 2021). it also provided existing social grants, such as disability and child grants (department of women, youth and persons with disabilities and united nations human rights 2021). these measures speak to sdgs 1 and 2. they may have functioned as socio-economic protection mechanisms for persons with disabilities. concurrent with the covid-19 pandemic, south africa continued addressing its ongoing human immunodeficiency virus (hiv) epidemic, with new infections taking place, particularly among young women and those in kwazulu-natal (burger et al. 2020). south africa also implemented stringent lockdown levels, which can particularly impact young women in transitional stages of life who are completing or have just completed their tertiary education and training and come from poorer households. while many young women with and without disabilities may struggle to access tertiary education in south africa, the country has implemented specific programmes to enable disadvantaged youth to access either universities, colleges or learnerships. these programmes include the provision of ‘free tertiary education’ through the national student financial aid scheme (nsfas) for students from households earning less than zar350 000 (usd19 000) a year and learnership grants and stipends that act as a form of income. in addition, young women with disabilities can apply for a disability grant of zar 2090 (usd112), which is a monthly social protection cash transfer for south african citizens who earn under a specific threshold and have a medical certificate confirming disability status. the forgotten agenda study was conducted to better understand the lived experiences of young women with disabilities during the pandemic and how they differed from women without disabilities of similar life trajectories as students or graduates in kwazulu-natal. the overall study not only focussed on disability and srhr but also captured elements of livelihoods, as livelihoods are critical contextual factors that enable young people to claim their srhr (unfpa 2017, 2021a, 2021b). the study focussed on the province of kwazulu-natal, as it has one of the highest rates of new hiv infections and teenage pregnancies among girls and young women in the country (de oliveira et al. 2017; south african national aids council 2023). this article focusses on the livelihood data from the forgotten agenda study. the availability of government social protection mechanisms allowed us to follow women with and without disabilities (18–25 years) through the pandemic and study if and how these mechanisms protected them and their households. this approach enabled us to understand the lived experience of participants who had access to social protection mechanisms and the impact of the covid-19 pandemic on their livelihoods. in this article, we use our participants’ narratives about their livelihoods. we aim to describe how young women with and without disabilities experienced the pandemic, how it affected their livelihoods and food security, and if and how their experience differs from those without disabilities. we will also discuss the potential use of these differences to inform progress towards those sdgs focussed on ending poverty and hunger. research methods and design a longitudinal participatory study was conducted with 72 young women in the ethekwini municipality of kwazulu-natal, a province in south africa, during the covid-19 pandemic. data were collected from participants at multiple time points to cover the different lockdown periods between april 2020 and march 2022. during the covid-19 pandemic, the study area underwent five distinct covid-19 waves: a strict lockdown with firm stay-at-home orders from march to may 2020, followed by different lockdown levels. additionally, severe civil unrest occurred in july 2021, leading to looting, destruction of businesses and 354 deaths (department of women, youth and persons with disabilities and united nations human rights 2021; hunter, singh & wicks 2021). the overall study applied a pragmatic paradigm underpinned by social justice issues. it used a mixed methods approach, including quantitative, qualitative and photovoice methods to understand participants’ experiences during these turbulent times. this article presents the quantitative and qualitative results relating to participants’ livelihoods, including food security. sample purposive sampling was applied to ensure that women of similar age and educational background were recruited into the study. the study recruited 72 young women with and without disabilities who were aged 18–25 (in 2020); enrolled in or had completed tertiary education in ethekwini; willing to self-report on their experience of the lockdown and its impact on their lives; able to understand and provide informed consent; conversant in english, isizulu or south african sign language (sasl); and willing to be audio or video recorded (video for ‘the deaf’1). the final sample included 37 black women without disabilities and 35 black women who were deaf or had visual, mild intellectual or physical disabilities (figure 1). figure 1: sampling framework forgotten agenda study. recruitment the initial strict covid-19 lockdown in south africa made meeting people where they study, work, live or socialise impossible. hence, we approached our first participants through online and mobile phone technology. the first 16 participants became seed participants. these participants were identified with the support of participants from our existing studies or through stakeholders at tertiary education facilities. seed participants and tertiary education facilities then assisted in recruiting further participants of similar age and disability status. potential participants received an electronic flyer with a study summary from seed participants or tertiary facilities. after identifying interested participants, seed participants provided contact details to the study team, which screened them for eligibility before they were recruited for the study. this eligibility screening was conducted via phone or whatsapp for all participants as this was the most feasible way to reach young people during the pandemic. this screening included oral or signed and, later, written consent. disability status was established through self-identification and checked against the washington group short set on functioning and an additional question prompting previous identification as a person with a disability (e.g. through going to a special school or receiving a disability grant). eligible participants were invited to undergo the informed consent procedures and, after that, decided if they wanted to participate in the study. informed consent procedures were conducted face-to-face for the deaf to enable appropriate communication using sasl, while all other participants undertook informed consent remotely using phone and whatsapp. information about the study was provided verbally and in writing, using accessible formats that included pictures to overcome language barriers. eligible participants who signed the informed consent (physically or electronically) were enrolled into the study. data collection the study used in-depth interviews conducted face-to-face with the deaf and telephonically with all other participants. participants were asked to identify a convenient and private place where they could freely express themselves. the interviewer checked this with the participant before the interview commenced. face-to-face interviews were conducted for the deaf at the ethekwini research office only after the strict lockdown ended and in alignment with lockdown regulations (e.g. shields, see-through dividing walls) (banks et al. 2022). an interview guide was utilised, including a quantitative set of questions and open-ended questions prompting participants living and household situations, access to resources, food security, experience and worries about covid-19, mental health, sexual reproductive health and rights, and exposure to violence. for food security, the household hunger scale (hhs) was utilised (ballard et al. 2011). the interview guide was made accessible through plain language and the usage of pictures and illustrations to include participants with intellectual disabilities and the deaf. illustrations were used to simplify complex concepts and overcome potential language and other access barriers. interview guides were translated and back-translated by two research assistants fluent in isizulu and english. participants also received instructions on how to support their descriptions of their lived experience during covid-19 with photos. this was carried out in a way that did not reveal the identity of the participants yet captured something related to their lived experience at the time of the interviews. interviews lasted approximately 1 h and were conducted in english, isizulu or sasl. these interviews prompted the participant to retrospectively reflect on their situation before the lockdown, during the strict lockdown and during the other lockdown levels using two repeating interview waves (2020/21 and 2021/22). all interviews were audio or video (the deaf) recorded and summaries were transcribed and translated into english. data entry and analysis the open-source suite for field data collection, kobotoolbox, was used to enter quantitative data (kobo inc 2022). interviews were audio recorded, transcribed and translated into english by four research assistants controlling for quality through data entry, transcription and translation checks. the qualitative and quantitative data were cross-checked against each other to ensure consistency. if they differed (e.g. education status), fieldworkers directly verified the information with participants. the software for statistical computing and graphics ‘r’ was used to analyse the quantitative data (r core team 2022). descriptive statistics were developed for all questions and the hhs and disaggregated for women with and without disabilities to assess differences. the descriptive tables use means and standard deviations for continuous variables and percentages for categorical variables. the hhs score uses a median and interquartile range (iqr) per developer recommendations (ballard et al. 2011). in addition to the median, the hhs is summarised using a categorical indicator. the hhs score was calculated by recoding each question so that an answer of ‘no’ or ‘none’ scored 0, an answer of ‘rarely’ or ‘sometimes’ scored 1 and an answer of ‘often’ scored 2. the three questions were added to get a score between 0 and 6. this score is generally not normally distributed, and it is thus recommended to summarise it using a median rather than a mean. this score is also categorised for the hhs categorical indicator, with a score of 0–1 indicating ‘little to no hunger in the household’, a score of 2–3 indicating ‘moderate hunger in the household’ and a score of 4–6 indicating ‘severe hunger in the household’. significance testing used fisher’s exact test for categorical variables, t-tests for continuous variables and the kruskal–wallis rank sum test for the hhs score. three significance tests were run for each variable, looking at differences between women with and without disabilities at each time point. p values greater than 0.05 were considered to be significant. the information from each participant’s qualitative and quantitative data and photovoice were combined to develop a case study for each participant. the qualitative and quantitative data were entered and analysed using guided content analysis and the qualitative analysis software nvivo (version 12) and were reported here. after familiarising themselves with the data, the researchers identified common themes and developed a codebook. after that, two independent researchers coded each case study using this codebook. codes were compared and differences were addressed between the coders through discussions leading to agreement. theme summaries were developed for each emerging theme and its sub-themes. nine major themes emerged, of which three (‘impact of the pandemic on livelihoods’, ‘capabilities’ and ‘food security’) were found to be relevant to livelihood experiences and are the focus of this article. ethical considerations the study received ethical clearance from the south african medical research council ethics board (reference numbers: ec020-6/2020 and ec001-2/2021). all participants underwent informed consent procedures and signed the informed consent form. the informed consent explained the study’s purpose, procedures, risks and benefits. it also clarified the voluntary nature of the study and confidentiality measures and provided contact details. participants who needed further support or counselling had access to the study nurse and counsellor, who referred participants to any additional services if needed. collected data were saved on the organisation’s shared drive and password-protected computers only accessible to study staff. the research team comprised of the principal investigator, co-investigator, study coordinator and research assistants. it consisted entirely of south african-based researchers, including white, black and indian staff of different genders. the fieldwork team included south african women with and without disabilities; two spoke fluent isizulu and english, and one was also fluent in sasl. the team included two researchers with a disability. hence, the research team included a diverse staff, encompassing participants of different races, ages, genders and disability statuses. most team members were highly experienced research staff with prior qualitative research experience and training. one team member had comprehensive training, experiences and skills needed to adapt educational and information material to research questionnaires and methods. one team member was trained for the first time and supervised by the other staff members. a validation meeting with participants (5) and stakeholders (5) from the tertiary institutions and the department of health (provincial and national) provided feedback to the community and confirmed study results and gaps. results overall, we recruited 72 young women (aged 18–25 in 2020) into our study, of which 37 were women without disabilities and 35 had different kinds of disabilities (deaf, visual, physical and mild intellectual disability). most participants (89%) were students in 2020 (table 1), while the rest graduated. they had enrolled in mainstream universities, technical vocational education and training (tvet) colleges or specialised colleges that accommodated the needs of young persons with disabilities (table 1). the latter specifically provided education for women with intellectual disabilities and the deaf. as such, participants with and without disabilities managed similar life trajectories as students or new graduates during the covid-19 pandemic. table 1: demographics and living arrangements. livelihoods in our study, participants explained how they managed their livelihoods during the covid-19 pandemic. participants with and without disabilities had similar challenges related to their living spaces, continued education and household income stability (physical, human and financial capital). participants without disabilities also discussed how they built gardens to plant crops and support the family (natural capital). they discussed what necessities they could acquire such as food, water, shelter and clothing and what resources they and their families accessed to make a living. these resources or capitals included their housing and living spaces, availability of land, income (earned, stipends and grants), and social connectedness and support. these resources or capitals are related to how participants and their families maintained their livelihoods and ensured food security. participants with disabilities did not report accessing natural resources (e.g. planting crops), and some struggled more regarding their social connectedness and ability to secure necessities such as food. ‘learning about each other’ – housing and living spaces during the pandemic one of the first significant changes experienced by participants was related to the initial strict lockdown in march 2020. participants and their family members had to return to their primary family homes, which often increased household sizes. before the covid-19 pandemic, participants without disabilities were more likely to live in a student residence (sharing spaces with fewer young people) than participants with disabilities (table 2). this dynamic changed during the strict lockdown period (march–may 2020), where most participants, regardless of disability status, lived with their families and could leave the house only for essential activities such as ‘grocery shopping’ or other essential services. most of these family homes were in rural areas or freestanding houses in townships (historically established suburbs commonly referred to as underdeveloped, urban residential areas formerly officially designated for ‘non-white’ people by apartheid legislation) (li & godehart 2007). during the strict lockdown, participants and their family members had to work or study from home if their work was not on the ‘essential work’ list. participants and their families had to learn how to live, work and study in a household with many family members. this change in living arrangements continued over the softer periods of lockdown, where family members gradually returned to work or studies at different times. table 2: demographics and living arrangements. overall, participants without disabilities described mixed experiences when reflecting on their changed living spaces. while these participants missed their freedom and independence living in the student residences, they appreciated the togetherness and time spent with their families: ‘it was a very emotional period … i can’t go out and do what i normally do, go see my friends and go shopping … we [family members] understand each other, and we are able to help each other, emotionally and physically.’ (23-year-old, woman, without disability) similarly, the experiences of participants with disabilities varied depending on their situation before the lockdown. some participants were living with family members in ethekwini – the town of their tertiary education institution. these participants had other family members join the household during the strict lockdown and spent time getting to know these family members: ‘during covid-19, we were just bonding with my family and …, we did learn about each other.’ (23-year-old, woman, with intellectual disability) other participants with disabilities had been staying far away from their families as ethekwini provides some of the few accessible tertiary institutions geared to accommodate the needs of the deaf or those with intellectual disabilities. these participants would move to their families for the strict lockdown and then back into town when these specialised educational institutions reopened. specialised educational institutions were allowed to reopen for face-to-face interactions earlier than other institutions. as a result, these participants could interact with friends and staff earlier than participants registered in mainstream tertiary institutions. ‘finishing this degree’ – continued education during the pandemic at the beginning of the covid-19 pandemic, most participants were students. during the strict lockdown, they had to adjust from in-person to online academic learning. participants with and without disabilities reported similar challenges, including noisy environments, a lack of internet connectivity or data, and space to study comfortably: ‘the connection [internet] is bad and … we are living together with the family and most of the time i have to do the chores of the house and when i am trying to study the kids are disturbing …’ (19-year-old, woman, without disability) ‘i do not like a lot of noise, when i tried to study, they [family members] kept making noise.’ (20-year-old, blind woman) participants reported taking over additional responsibilities to manage the household. these responsibilities generally included cleaning, cooking and looking after the children. participants with and without disabilities expressed concerns about continuing their studies and the effects on their future. anxieties were heightened for participants with disabilities who had experienced challenges in studying before the pandemic. family and friends were crucial social support structures: ‘i talk to friends and people close to me when i am feeling sad and lonely. the thought of the future and not being employed depressed me …’ (23-year-old, woman, without disability) ‘i was worried about my future … when “corona” came, i said there is no way i will finish this degree. i was devastated; i use to cry at night. i would call my mother and say: “you know, today i feel like taking my life”, then she would motivate me and uplift my spirit.’ (25-year-old, woman, with physical disability) the challenges in accessing and completing education changed for participants depending on their tertiary institution. participants with disabilities at institutions targeting young persons with disabilities (e.g. learnership programmes and colleges for young persons with disabilities) had their educational challenges mitigated earlier as their institutions were allowed to return to face-to-face lectures months before mainstream universities opened for in-person lectures: ‘i am back and happy to study it at [institute for the deaf]. i see my friends there, and i am not lonely.’ (24-year-old, deaf woman) hence, challenges to continuing their studies existed for participants with and without disabilities. these challenges included noisy or crowded homes, internet connection challenges and additional workload managing the household. adjusted lockdown regulations enabled tertiary institutions focussing on young persons with disabilities to respond faster to students’ educational needs than their mainstream counterparts. ‘using grants to buy food’ – earning a living during the pandemic during the strict lockdown, only essential services were allowed to continue operating face-to-face. people outside these services needed to work or study from home. people lost their jobs or had reduced income, where it was not possible to work from home. participants with and without disabilities reported on family members losing their jobs, being retrenched, or being unable to earn an income with their informal businesses. the households of participants with and without disabilities lost income. many survived on social grants (old-age pension, child support and disability) or student stipends: ‘many people were retrenched and lost their job. uhhm, the food prices went sky up high, making it difficult for people who are earning less salary and those who are not earning at all to be food secure.’ (21-year-old, woman, without disability) ‘we had to use my granny’s grant and my grant to buy food because i had to be supportive since i wasn’t going to school.’ (20-year-old, blind woman) this situation improved in some households after the strict lockdown levels were lifted and people could return to work: ‘now [soft lockdown] many of my aunties are going to work, they can afford the groceries, everyone is contributing towards the groceries.’ (18-year-old, blind woman) student stipends and scholarships were important sources of income for participants with and without disabilities and their families. most students without disabilities accessed the national student financial aid scheme (nsfas) and received a monthly living allowance of approximately zar1400/usd80 (+ housing and material support). those students in colleges providing training and learnerships for young persons with disabilities received a stipend of approximately zar3000/usd167 for living and housing. if participants with disabilities did not attend their tertiary studies, they could no longer receive the college-specific stipend but could access the disability grant of approximately zar1900/usd106 (one cannot receive the disability grant and the stipend). a few participants reported their families accessing the covid-19 disaster grant or food parcels. hence, this sample of participants could access social protection schemes and student support. ‘making a garden’ – using land and gardens to plant crops those participants who returned from student residencies to their family homes reported moving back into rural areas with larger homesteads or freestanding houses in townships. participants moving back to rural areas reflected on the change in their lifestyle, with many supporting the acquisition of water or firewood and planting of crops. these reports were mainly made by participants without disabilities: ‘i had to go back collecting water, wood here in [name of rural area]. life has reversed from being a student to coming home.’ (19-year-old, woman, without disability) many participants without disabilities reported that their families used their land to plant crops for their usage and food security. these participants reflected positively and sometimes with pride on their experience of growing vegetables and bonding with other family members: ‘i knew that in some cases, we will end up not having enough money to provide for people, so i thought i should make a garden for myself so that i just have veggies and for healthy, balance diet. i needed veggies for me, my dad and mom.’ (18-year-old, woman, without disability) following these participants through the pandemic revealed that for some, the new activities of planting and harvesting crops and products supplied their households with fresh food and became a source of income by selling crops and other goods to community members: ‘i started a project of planting crops and selling them to neighbours, so that i can make extra cash. the aim is to have a bigger garden and be able to supply some stores.’ (19-year-old, woman, without disability) similar reports about gardening, planting crops or starting income-generating activities were not made in the group of women with disabilities, suggesting that they did not participate in these activities or that these families did not have access to land and livestock. ‘communicating with my family’ – staying socially connected during the pandemic all participants lived with their families during the strict lockdown, and for many participants, this reality held for several months. depending on their universities’ regulations, participants returned to their student accommodation at different times. the strict stay-at-home orders and enforced move to family homes separated most participants physically from their friends and broader social network while bringing them close to their families. participants experienced this differently. while participants reported that they missed their friends and tried to stay connected using social media, some experienced the time with their families positively: ‘i’d call [whatsapp] my friends and tell them whatever is going on at that moment, … if my problems are not secrets, then i’d just tell my mom, [m]om. i’m going through something like this, and she will sit me down and give me advice …’ (19-year-old, woman, without disability) participants’ experiences depended on the ability to communicate and interact with family members. the deaf experienced communication challenges with their family members as their families did not know sasl. these participants had attended special schools for most of their schooling. these schools are far from their families, and while participants learned sasl, their family members did not. in addition, these schools use english as a medium of instruction, while the deaf participants’ family members speak isizulu. this reality made lipreading impossible as an alternative. as a result, the deaf experienced the strict lockdown with their families as isolating as they could not communicate with their family members properly: ‘i couldn’t communicate with my family as they don’t know sign language, only basic/common signs. i was the only deaf person there, it was very hard and lonely.’ (25-year-old, deaf woman) participants with disabilities also discussed factors that assisted them in keeping socially connected. family members’ interest in learning augmented communication (e.g. sasl), sign language in news channels, accessible living spaces, access to the internet and support were essential factors that made participants feel cared for and included: ‘i studied at home and taught my little nephew how to sign. my family did basic signs to me. i was lonely, but my little nephew kept me busy.’ (23-year-old, deaf woman) ‘i have a strong support system. it allows me to be myself, allows me to be comfortable in my own skin … everything is easily accessible; people here make it easy.’ (25-year-old, woman, with physical disability) ‘there was an interpreter on the tv signing. i was impressed because i could follow the news.’ (21-year-old, deaf woman) hence, the accessibility and inclusion levels in the home environment determined if participants with disabilities could stay connected during a crisis. these accessibility and inclusion measures were established before the covid-19 pandemic and determined how the participants felt socially included during the pandemic. ‘buying food’ – capabilities to meet basic necessities during the pandemic participants reflected on their capabilities to acquire essential goods for their livelihoods during the pandemic. those with and without disabilities explained that they supported their families financially with their student stipends and social grants. participants without disabilities also reported on planting crops. participants’ human and financial resources were used to provide food for themselves and their families; support building house structures; and pay for transport, internet data and other commodities (e.g. menstrual products). some participants with disabilities also reflected on ‘sending money’ to other family members not living with them, either to support these family members or to look after their children: ‘my sister and i get nsfas and the social grant (child grant) … we combined money and bought lots of food at the beginning of the month so that the food would last us longer. and those who are working contributed … and my grandmother contributed so we would have food that would last us longer.’ (20-year-old, woman, without disability) ‘once a month, i buy a big bag of mealie meal [maize meal]. i will eat chicken, meat and veg when i have enough money. i struggle with money. i pay r1200 to my aunty, who looks after my daughter.’ (25-year-old, deaf woman) earned income, stipends and grants were critical financial resources for families. hence, households with employed family members managed better through the pandemic. participants often shared part of their stipends with the family to buy food, focussing on buying essential groceries: ‘she [mother] used to buy groceries at the beginning of the month … when we [siblings] get our allowances [stipend], we would contribute r500 in the middle of the month to go and buy more groceries, so in that way, we managed to have enough food and not starve.’ (21-year-old, woman, without disability) ‘we used my grandmother’s grant and my disability grant to buy food once a month.’ (20-year-old, woman, with physical disability) hence, depending on their household situation, participants spent their stipends on themselves or shared it with others. participants who could stay by themselves and did not have family responsibilities were better off. for instance, one blind participant described that she could return to her student residence after the strict lockdown and buy her own groceries and goods: ‘i received an allowance [student grant] on a monthly basis, i stay by myself … i buy what i need in that month.’ (21-year-old, blind woman) other participants with disabilities said they struggled with money even if they had returned to their study arrangements. these participants had to share their student stipends with other family members, providing for their own children or family members who did not earn any income. these participants indicated that they struggled with their available finances: ‘my siblings don’t have jobs, they always ask for money for food, and they also say my child is sick [siblings look after the child].’ (24-year-old, deaf woman) hence, depending on the family situation, participants experienced challenges acquiring essential goods. some participants with disabilities struggled more to ensure enough resources were available to meet their own and their family’s needs. ‘not eating all the time’ – impact of the pandemic on food security and hunger participants with and without disabilities experienced similar financial situations as both groups had access to financial aid through student stipends and experienced additional financial responsibilities to support their households. however, participants with disabilities were more likely to report food insecurity and hunger. overall, participants without disabilities less frequently reported challenges with accessing enough food than participants with disabilities, and this difference held throughout the pandemic. this trend was observed in all the questions in the hhs, namely that they had no food in the house, went to bed hungry or had nothing to eat all day (table 3). the difference was still significant in the soft lockdown phase, suggesting a persistence of long-term inequalities. in addition, participants with disabilities more frequently reported accessing food parcels and social grants (child support, disability and covid-19 disaster grants). table 3: food security and social protection. similarly, the overall hunger score indicated that participants with disabilities were more likely to experience moderate hunger in their households. this difference held throughout the pandemic, with the gap widening as the pandemic progressed (table 4). table 4: household hunger scale. participants with and without disabilities reported heightened awareness in their families to manage food carefully. participants without disabilities reported that their families would opt to buy food in bulk and supplement their family meals with the crops gained from their gardens: ‘we pile stock every beginning of the month on basic needs that are going to be used during the month … we limited how often we eat in a day.’ (19-year-old, woman, without disability) ‘vegetables were harvested at the home garden and were not bought from the shop. the garden kept a vital role at home.’ (25-year-old, woman, without disability) furthermore, participants without disabilities reflected on the contribution of family members who were working or receiving some form of social grant. these participants described how they contributed to food security with their student stipend to counteract the loss of other family members’ income during the strict lockdown and that they could stop these contributions once they were back at work: ‘with my nsfas money, i used to buy groceries [strict lockdown] … the food situation is much better now [soft lockdown] because our brother provides more money.’ (19-year-old, woman, without disability) ‘my aunt works at illovo, she is a breadwinner, buys food and gives us money every month. grandmother’s money buys something, but only if something in the household is short.’ (20-year-old, woman, without disability) overall, participants without disabilities seldom reported food insecurities. while some reported adjusting their food sources to cheaper options, others reflected on overeating during the strict lockdown, as family meals were among the few forms of entertainment left to people. in these families, eating habits normalised after the strict lockdown: ‘we are now back to buying once a month and have now improved, we don’t eat all the time as before [during the strict lockdown] because people are back at work and school because boredom is what made us eat a lot [during the strict lockdown].’ (19-year-old, woman, without disability) participants with disabilities also reported that their families would opt to buy food in bulk, manage their resources carefully and use leftover food. only one participant with disability reported that their family used a garden to grow crops. overall, participants with disabilities described that ensuring enough food was available for their families was hard. some also reported that their family relied on them for financial support to acquire food for the household: ‘at home, we buy food at the end of every month because that is when my mother and i get paid, we make use of the grant money from my late sister’s children and the money my mother and i get paid to contribute towards the groceries at home, it is a lot of groceries, and we all know that it will last us.’ (23-year-old, woman, with intellectual disability) ‘we have nine adults and some young children. some of my siblings are not working. my mother relies on me for money because i get money from studying. my siblings don’t help enough. my mother is old and it is hard on me … sometimes i only eat breakfast and skip meals as i struggle to have enough money.’ (24-year-old, deaf woman) some participants with disabilities also described that their families rationed portions or skipped meals. these participants reported changing their routine in eating habits or reducing the number of meals their families would have. some participants reported going to bed hungry, as they lacked the resources to buy food: ‘ever since lockdown started, we changed the routine of eating, we normally eat three times a day, so we changed it to two times a day, breakfast and lunch was combined, and then we eat supper at eight … we used my grandmother’s grant and my disability grant to buy food once a month.’ (29-year-old, woman, with physical disability) ‘i eat mostly breakfast, miss lunch, and then eat supper. sometimes i go to bed hungry because i don’t have enough money to buy food.’ (25-year-old, deaf woman) hence, despite the similarity of life situations among our participants with and without disabilities and their similarities in access to financial aid and student support, participants with disabilities more frequently reported times of food insecurity or hunger in their households. discussion our study followed a cohort of young women with and without disabilities in ethekwini, kwazulu-natal, south africa, who were enrolled in (or had just completed) tertiary education through the covid-19 pandemic. while all participants experienced similar challenges during the pandemic, their experiences of food security and coping mechanisms were different. literature on food security and disability is emerging (mitra 2013; mitra et al. 2013; schwartz et al. 2019; united nations department of economic and social affairs 2018). existing evidence shows that persons with disabilities are more likely to experience poverty and food insecurity, as poverty and food insecurity are intertwined. while the evidence on food security shows a causal relationship between disability and food insecurity, it does not yet consider the broader social and environmental context (schwartz et al. 2019). schwartz et al.’s literature review of 106 articles covering disability and access to food or food (in)security worldwide showed that the mediators of the relationship between disability and food insecurity are underexplored. the authors state that the literature mainly conceptualises disability as a factor preventing access to food while neglecting disabling social and environmental barriers (schwartz et al. 2019). our study suggests that pre-existing inequalities (e.g. access to natural and social capital) are potentially such mediators even when participants’ life trajectories are similar. schwartz et al. review also revealed that literature is mainly available from resource-rich countries (only one study was from africa, specifically ethiopia), focussed on older people (only four studies were on the group between 18 and 25 years of age), and that studies compared people with and without disabilities without considering their specific life situations in terms of access to livelihood capitals, support and inclusion (schwartz et al. 2019). our study provides a unique opportunity to compare the experiences of young women with and without disabilities in similar life trajectories as students or graduates during a crisis. the data provide insight into the complexities of livelihood capitals, support and inclusion, and how these are connected to the participants managing scarce resources and food security during a crisis. participants’ situations were similar regarding their living spaces, their need to further their education during the covid-19 pandemic, their ability to access student financial support schemes and social grants, and their additional responsibilities to manage the family’s housework. the latter is likely linked to our sample being young women. as such, cultural or gender expectations dictate that they support cleaning, cooking and looking after children. these expectations applied to both women with and without disabilities. however, despite the similar life trajectories in education and socio-economic contexts, participants with disabilities were more likely to experience food insecurities in their households, and this seems to be related to lower livelihood capital in the participants’ households. the literature recognises reduced financial resources, higher expenses and reduced coping mechanisms (bargain hunting, home cooking, gardening, social assistance, etc.) as key factors explaining the food insecurity-disability nexus (heflin, corcoran & siefert 2007; huang, guo & kim 2010; schwartz et al. 2019). geographical factors (e.g. availability of shops vs. ‘food deserts’); biological factors; environmental barriers; and social norms, attitudes and support are also identified as mitigating factors that enable or reduce access to affordable food sources (schwartz et al. 2019). our study showed that participants with and without disabilities had access to student stipends and social grants (financial capital). these financial support mechanisms became essential resources for the participants’ entire households during the covid-19 pandemic. participants’ households experienced similar challenges in living in larger households, with family members’ income loss and with enforced lockdown restrictions. considering that depending on the source, between 7% and 20% of south africans live below the international poverty line, it is unsurprising that the participants’ financial resources became essential to families in times of crisis (our world in data team 2023; united nations department of economic and social affairs 2023). however, the participants’ households dealt with the pandemic differently. while all participants experienced challenges and heightened awareness to ensure food security, households of participants without disabilities reported utilising land and gardens to plant crops and substitute food sources from subsistence farming activities (natural capital). only one participant with a disability mentioned ‘gardening’ as an activity (by other household members) to provide food for the household. despite this additional food source, participants with disabilities were more likely to report challenges with accessing food throughout the pandemic, compared to participants without disabilities. participants with disabilities described their student stipends (and, alternatively, disability grants) as important sources of income for their families, which they shared to provide for themselves, other family members and their own children. the qualitative data suggest that participants with disabilities and their families had less access to financial and natural resources (income and land) overall. local and international literature on poverty and disability reveals that both persons with disabilities and their households are more likely to experience unemployment and poverty and that this is also gendered (banks & polack 2015; hanass-hancock et al. 2017; mitra & yap 2022; mitra et al. 2013; national department of social development 2015). furthermore, literature on land ownership reveals that persons with disabilities and their households are less likely to own and utilise land (united nations department of economic and social affairs 2018). our findings seem to align with this reality. the 2018 un flagship report revealed that persons with disabilities are more likely to live in food-insecure households (united nations department of economic and social affairs 2018). this reality continues to be the case in research on persons with disabilities conducted during the covid-19 pandemic (covid-19 disability rights monitor & brennan 2020; mckinney et al. 2021; wickenden et al. 2021b). our study adds to this body of literature focussing on young women with disabilities in a middle-income country (south africa) and how their experience compares to young women without disabilities. the participants’ experiences were similar regarding their living spaces, initial educational challenges and added responsibilities to support the housework. specialised educational institutions were able to respond faster to the needs of young persons with disabilities. differences appeared regarding financial management and food security, which calls for reconsidering the purpose of social grants targeting persons with disabilities. social protection mechanisms such as the disability grant in south africa are linked to available income. thus, they are poverty-mitigating grants, not measures to address disability-related inequalities (hanass-hancock & mckenzie 2017; national department of social development 2015). reconceptualising the purpose of disability grants as a mechanism to counteract inequalities will help to mitigate poverty further and treat persons with disabilities as equal members of society who are also providers for their families. for instance, if means testing for the disability grant is removed, the grant would be allocated based on disability status alone. persons with disabilities could then access the disability grant regardless of their source of income. this change will assist them with the extra opportunity and out-of-pocket costs associated with disability, as these costs make it more difficult for them to provide for their families (hanass-hancock & mckenzie 2017; hanass-hancock et al. 2017; national department of social development 2015). such a reconceptualisation will also affect our understanding of the international poverty lines set out in the sgds, which need to be higher for persons with disabilities and their households (sdg 1). similarly, cash benefits (grants) targeting disability inequality would need to be tracked separately, targeting all persons with disabilities with social protection mechanisms to mitigate disability-related inequality (sdg 1). sdg 1 and 2 indicators also need to be disaggregated by disability and gender to understand if persons with disabilities experience poverty and hunger and, if so, which group of persons with disabilities is most affected. this calls for disability-disaggregated data collection, monitoring and evaluation of progress towards the sdgs. our study also revealed essential social and environmental factors that affect crisis management. participants with disabilities identified social support, home environment accessibility, internet access and communication accommodation as essential factors that helped them to cope during the pandemic or, in their absence, feel excluded. hence, this experience emphasises the importance of enabling households with persons with disabilities to develop accessible home environments (including assistive devices) and communication methods before a crisis occurs. approaches that considered the specific needs of young persons with disabilities, such as returning students with disabilities to face-to-face lectures and providing accommodation, were critical to crisis management. while this worked for some of our participants, literature worldwide suggests that pandemic responses with social distancing regulations often neglected the needs of persons with disabilities, in particular young persons and women with disabilities (covid-19 disability rights monitor and brennan, 2020; leonard cheshire 2021; unfpa 2021a). our study shows that it is possible to respond differently and, through this, mitigate some of the impacts of a crisis. however, this was only possible where social protection was accessible, where colleges or universities could adjust quickly to the needs of young persons with disabilities, and where young persons with disabilities had access to the necessary disability accommodation in their home and study environment. hence, pre-existing inequalities and access to mitigating mechanisms (e.g. accessible education and social protection) are vital to ensuring that people with disabilities are not left behind in times of crisis. while adapting the disability grant mitigates some of these inequalities, mainstreaming disability across social protection and critical programmes and policies is another way to create more equitable societies. this mainstreaming must be monitored with disability-inclusive indicators across programmes, including poverty alleviation and food security. limitations the study provided rich information about the experiences of young women studying in ethekwini, kwazulu-natal, south africa with particular insight into the similarities and differences of their experiences depending on their disability status. the study is limited to a small group (72 participants) and included tertiary-level students and graduates who predominately had access to government financial aid. while this approach enabled a focus on differences based on disability (isolating the intersection with gender or socio-economic status), it limits the representativeness of the study to this group. hence, the study does not represent the experience of young people in south africa overall. in addition, the fieldwork was conducted during the covid-19 pandemic, and alternative approaches to data collection were applied, namely, social media (whatsapp) and phone conversations with most participants. this approach enabled broader inclusion of participants but could have limited how much participants shared with researchers (banks et al. 2022). as the original study focussed on sexual reproductive health and rights and disability, it did not include comprehensive data on livelihood, poverty and food insecurity. while the available data provided much-needed insight in a unique context, more information is needed to understand the disability-food-security nexus fully. more nuanced research is needed to understand livelihood differences between persons with and without disabilities and how these intersect with different life circumstances, gender and age. conclusion this study shows that social protection mechanisms mitigated the impact of the covid-19-related lockdown for all recipients and their households in times of crisis but that households of participants with disabilities still struggled more than others. participants with and without disabilities reported similar experiences related to their housing, education and financial situations (physical, human and financial capital). they also reported similar gendered responsibilities during the pandemic including housework and having to look after children, while trying to keep engaged with their studies. while all participants describe changes in how and with whom they could socialise and gain support, deaf participants described experiencing significant social isolation (low social capital). similarly, while participants without disabilities elaborated on utilising gardens, none of the participants with disabilities reported on the usage of gardens or crops to mitigate the impact of lockdowns on food security (natural capital). overall, participants with disabilities reported more challenges in utilising their resources (capital) to buy necessities for their daily lives (capabilities) and more food insecurity or hunger in their households. these additional challenges may be related to pre-existing inequalities, with participants with disabilities and their households having less access to natural resources and long-term financial stability, even if they come from similar backgrounds and follow similar life trajectories. acknowledgements the authors would like to acknowledge the contribution of all our participants with and without disabilities. their time and efforts to enable us to understand their experience during the covid-19 pandemic are greatly appreciated. they would also like to acknowledge the contributions of our fieldworkers amanda clyde, nomfundo mthethwa, sue wilson and noxolo nzuza, as well as the conceptual support of kristin dunkle. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions j.h.-h. conceptualised this study and oversaw the fieldwork and data collection, entry and analysis. she wrote the first and final draft of this article. m.m. conceptualized the study, reviewed the quantitative analysis and reviewed the paper. b.c. conceptualised this study, conducted the quantitative analysis and wrote parts of this article. s.w. conducted part of the data analysis and proofread the final study. a.n. led the fieldwork, data collection and data entry; conducted parts of the analysis; and proofread the final article. t.p. supported the analysis and proofread the final article. funding information this study was supported by the uk foreign commonwealth and development office (fcdo) through the covid collective based at the institute of development studies (ids). the collective brings together the expertise of uk and southern-based research partner organisations. it offers a rapid social science research response to inform decision-making on some of the most pressing covid-19-related development challenges. data availability the data that support the findings of this study are available on reasonable request from the corresponding author, j.h-h. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors 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narrative interviews’, disability studies quarterly 41(3), 1–28. https://doi.org/10.18061/dsq.v41i3.8375 wickenden, m., wakoko, e., shaw, j., thompson, s.j. & rohwerder, b., 2021b, ‘the situation has exposed persons with disabilities to double edged pain’: people with disabilities’ experiences of the covid-19 pandemic in uganda, institute of development studies, brighton. footnote 1. the article uses ‘the deaf’ when speaking about participants who are deaf and use sasl as their main language and prefer to identify as the deaf (national institute for the deaf 2022; stander and mcilroy 2017). abstract introduction methodology findings discussion limitations of this study conclusion acknowledgements references about the author(s) marubini c. sadiki department of research administration and development, university of limpopo, polokwane, south africa israel kibirige department of mathematics, science, and technology education, faculty of humanities, university of limpopo, polokwane, south africa citation sadiki, m.c. & kibirige, i., 2022, ‘strategies employed in coping with physical disabilities acquired during adulthood in rural south africa’, african journal of disability 11(0), a907. https://doi.org/10.4102/ajod.v11i0.907 original research strategies employed in coping with physical disabilities acquired during adulthood in rural south africa marubini c. sadiki, israel kibirige received: 11 june 2021; accepted: 29 mar. 2022; published: 05 aug. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: society places people with physical disabilities acquired during adulthood in disadvantaged positions, especially when they cannot participate in activities like their non-disabled counterparts. the situation can be worse for individuals who acquire disabilities during adulthood, where they have to learn to cope with the adulthood-acquired physical disabilities. objectives: this study aimed to identify the types of physical disabilities acquired during adulthood and their causes and explore how participants defined their disabilities and the coping strategies they used. methods: the study used a phenomenological research design. five adults (three women, two men) with adulthood-acquired disabilities were purposefully selected from a rural area in limpopo, south africa. data were collected using semi-structured interviews. thematic analysis was used to generate themes about coping strategies study participants used. results: the results show four types of adulthood-acquired disabilities amongst the participants: visual impairment, paraplegia, weakened muscles which led to bilateral amputation, loss of function on both hands and legs. participants’ meanings of their physical adulthood-acquired disabilities ranged from a punishment, pain, not a bother, black magic, to results of doing wrong things to someone. in coming to terms with their adulthood-acquired disabilities, participants used problemand emotion-focused strategies. four themes from the participants’ responses were spiritual support, social support, substance dependency, access to health and rehabilitation services. conclusion: the study contributes to understanding the experiences of individuals who acquired disabilities in adulthood, how they define their disabilities and the divergent coping strategies they use. this study established that participants used problem-focused, positive emotion-focused and negative emotion-focused coping strategies. keywords: adulthood-acquired disability; coping strategies; support; experiences; rural community. introduction the world report on acquired disabilities is an intricate and multifaceted concept because there are many definitions depending on the disciplines, such as medicine, sociology and politics (mitra 2006). historically, the concept of acquired disability was perceived as a religious myth, and various african cultures perceive it differently (eskay et al. 2012). acquired disability was seen as a punishment for wrongdoing, and such beliefs still exist in some societies (world health organization [who], unesco, international labour organization & iddc 2010). as a result of these mixed perceptions, acquired disability has been associated with stigma, discrimination and isolation, which result in low self-esteem (parr 2007). whilst disabled persons have the same rights as anybody else, physical and social barriers in society limit their performance of specific tasks (who 2010). many authors agree with the international classification of functioning (icf) that disability of any form is a persistent condition interacting with individual, contextual and social factors (who 2001). adulthood-acquired disabilities (aads) are disabilities that individuals gain after 18 years of age and after high school. globally, 350 to 500 people acquire physical disabilities each day (disabled world tomorrow 2013). a few studies show that aad may arise from illness or injury (calderón-larrañaga et al. 2018; lisko et al. 2021; mcalpine 2008; norman et al. 2007), and they come with significant changes to social, emotional and psychological well-being. the number of people with aad globally is shocking. according to the disabled living foundation (2021), 80% of all disabilities are acquired during adulthood between 18 and 64 years. people with aad face discrimination challenges (tagaki 2016) and social exclusion in societies (lejzerowicz & tomczyk 2018). society applies an eugenic influence to consider persons with aad as inferior in society (watermeyer, mckenzie & swartz 2019). facing these circumstances, people with aad develop low self-esteem (bogart 2014) and may develop mood swings between positive and negative (yoshida 1993). disability is professed as problematic and needs treatment and rehabilitation (buntinx & schalock 2010). thus, people with aad need support to adjust to the acquired disability as a new way of life (tagaki 2016; yıldız & cavkaytar 2020). people with add need social support to become resilient (müller et al. 2012) and productive in society (macleod et al., 2016). rehabilitation is goal-oriented to enable people with aad to attain holistic functioning (who 2011). in this study, rehabilitation is a means to expedite social adjustment to the new condition. articles 20 and 26 of the united nations convention on the rights of disabled people (2006) address accessibility and rehabilitation, and it clearly states the measures to ensure that people with aad access health and rehabilitation services (united nations [un] 2006). rehabilitation depends primarily on the quality of the interactions between professionals working with disabled people and their families (diken 2006; pechak & thompson 2007). in africa, 10% of the population lives with disabilities (who 2011). according to munyi (2012), individuals with acquired disabilities are regarded as destitute, and they are regularly associated with everything evil (lustig & strauser 2007). in zimbabwe, the most dangerous magician is a disability (khupe 2010). in namibia, each tribe approves traditional and cultural policies to guide families and communities regarding disabilities (khupe 2010). for instance, a plate or cup used by a disabled person is considered ‘ritually unclean’, which can be good for feeding cats and dogs (khupe 2010). thus, these myths suggest that those with acquired disabilities are perceived to host evil spirits (khupe 2010). according to statistics south africa, the concept of physical disability has developed over a long time, and it is a physical or mental challenge lasting for 6 or more months and impeding a person’s physical functioning (statistics south africa 2014). any impairment limits body functions, such as spina bifida, amputation, wounded spinal cord and dwarfism (ross & deverell 2010). adults who acquire physical disabilities may experience activity limitations (eide & igstad 2013) and may need to adopt coping strategies to manage their new state of life. coping refers to adjusting individuals’ behavioural and psychological efforts to accommodate internal and external stressors (folkman & lazarus 1984). it is the mental and behavioural effort devoted to overcoming stressful circumstances (folkman & moskowitz 2004). coping strategies may be healthy or not (folkman & moskowitz 2004). roth and cohen (1986) highlighted two coping strategies, problem-focused and emotion-focused, later expounded upon by moos (1992). problem-focused coping strategies endeavour to change the distressed person’s conditions, whereas emotion-focused coping regulates the upsetting emotions (chen et al. 2018; folkman & lazarus 1984). for example, moos (1992) detailed (1) the problem-focused coping strategies to include four tenets: logical analysis (la) measuring cognitive effort, positive appraisal (pa) involving accepting the reality of the problem, seeking support (ss) regarding information and support from others, and problem-solving action (ps), where a problem is directly addressed. (2) emotion-focused coping strategies also encompass four tenets: cognitive avoidance (ca), where one avoids the reality of the situation; acceptance (a), where an individual accepts the conditions as they occur; seeking alternative rewards (ars) suggest behavioural changes to engage in new satisfying activities; and emotional discharge (ed), where negative emotions are expelled. positive emotion-focused coping involves consolidating links with others for emotional support. negative emotion-focused individuals blame others, express hostility and panic about stressors (chen et al. 2018). despite the many models to explain the experiences of acquired disabilities, these models are not adequate to describe the lived experiences of people with aad (livneh & martz 2012). to date, there are few studies regarding coping experiences of people with adulthood-acquired physical disabilities. therefore, this study (1) identified the types of physical disabilities acquired by participants and their causes; (2) explored participants’ definitions of acquired physical disability and the strategies they employed in coping with adulthood-acquired physical disabilities. methodology research design this research aimed at understanding strategies participants employed in coping with adulthood-acquired physical disabilities using a phenomenological research design (eds. denzin & lincoln 2005; merriam 2009; smith, flowers & larkin 2009). the phenomenological design was suitable because participants described their experiences of the disability phenomenon (creswell 2012), thus revealing the quintessence of things (lin 2013). the investigation was carried out in a rural real-life situation and no attempt was made to manipulate the phenomenon of interest (kobus 2010). it employed ethical triage to avoid harm to participants, such as prioritising events as they occur and paying attention to the interviewees’ visual expressions (buchanan & warwick 2021). as a result of the sensitivity of the research topic, the author arranged counselling sessions for participants who required the service because of the potential of interviews resulting in psychological discomfort. participants families with disabled adults in the vhembe district in the limpopo province were approached for participation, and the study sample was chosen based on having acquired the disability during their adulthood. initially, seven participants were recruited using the linear snowballing technique, where the first participant was identified and referred the researcher to another person, and another person referred to another, up to the seventh participant. however, two participants withdrew before the end of the study, and they were not included in data analysis. the withdrawal was because of their relocation away from the study area. creswell (2012) contended that a sample of 5–25 is good enough for a phenomenological study to yield rich data. voluntary consent from the participants was obtained before data collection. in order to ensure the anonymity of participants, the researchers used codes (participants a–e). data collection instrument and procedures data were collected using semi-structured interviews and document analysis (creswell 2012). each participant was given an appointment that was convenient. all participants signed consent forms before interviews. an audio recorder was used to record the interviews, and each interview lasted between 50 and 60 min. this time was adequate to allow probing (de vos et al. 2011). the responses were read back to the participants to ascertain that what was recorded reflected their views, thus prolonging the process to refine the findings. all interviews were conducted in tshivenda. the tshivenda version was translated to english, and the english version was back-translated to tshivenda to ensure that meaning was not lost. an interview schedule with the following questions was used to obtain information from participants: how and when did you acquire the disability? how would you define disability? what has been your experience of living with the disability? what has helped you to cope with disability? data analysis data from the audio-tape recorder were transcribed. the first author read and re-read the participants’ transcripts (rubin & babbie 2011). data were thematically analysed using guidelines explained by braun and clarke (2006): reducing data, selecting significance from less significant issues, recognising vital points and constructing a framework to reveal real issues at hand. thematic analysis was used to get the main points, notable topics and novel themes. trustworthiness the researchers enhanced credibility and trustworthiness by reading and re-reading the participants’ transcripts to confirm what was captured as true reflections of their views, and this process prolonged engagement (lietz, langer & fruman 2006) and minimised bias (lietz et al. 2006). after listening to the recorded data many times, the researcher transcribed and read the transcripts to capture lived experiences. the information was subsequently returned to the participants to confirm the interpretation and themes that reflected their concepts regarding strategies used to cope with adulthood-acquired physical disabilities. findings the results show that most participants had negative attitudes towards their disabilities. four types of aad amongst the participants were: (1) visual impairment, (2) paraplegia, (3) weakened muscles which led to bilateral amputation, (4) dysfunctional hands and legs. the types of participants’ aad and their causes are shown in table 1. table 1: participants characteristics (n = 5). the prevailing types of disabilities amongst participants included visual impairment, and physical disability. causes of disabilities the participants gave brief accounts on how they had acquired the disabilities: ‘i acquired visual impairment when i was involved in a car accident. the injury affected my both eyes.’ (participant a, visual impaired, 25 november 2012) ‘i acquired physical disabilities when i slipped off the roof i was repairing. it is because of the fall that i lost function in the lower part.’ (participant b, paraplegic [loss of function in the lower part – participant using wheel chair], 15 november 2012) ‘i acquired physical disability because of diabetes, where both legs were amputated.’ (participant c, weakened muscles in both legs amputated [participant using artificial limbs and crutches], 03 november 2012) ‘i acquired physical disability when i was knocked down by a car whilst crossing a road and the driver failed to stop when the traffic light was red on his side. i am currently using a wheelchair.’ (participant d, loss of function in hands and legs [participant using wheel chair], 03 november 2012) ‘my physical disability is because of a motorbike accident. i was under the influence of alcohol at the time of the accident. i collided head on with a truck. as a result, my both legs were amputated.’ (participant e, both legs amputated [participant using wheel chair], 12 november 2012) participants’ definition of disability the participants’ meaning-making of their aad ranged from associating it with punishment, pain, not a bother, to ‘black magic’. a few extracts from the participants are as follows: ‘to me, disability is a curse. i mean it is a punishment because i was not born like this, i was the only one injured during that accident.’ (participant a, visual impaired, 25 november 2012) ‘the disability is not a bother to me. i have learned to cope with it. i take it easy and learn to live like any other able-bodied people, which assist me to escape negative attitudes from my community.’ (participant b, paraplegic [loss of function in the lower part participant using wheel chair], 15 november 2012) ‘disability is a result of doing wrong things to someone. maybe it is a punishment or a payback. i do not know.’ (participant c, weakened muscles in both legs amputated [participant using artificial limbs and crutches], 03 november 2012) ‘disability is pain, which you cannot understand until you experienced. i feel i am a burden to my family.’ (participant e, both legs amputated [participant using wheel chair], 12 november 2012) ‘disability is “black magic”, meaning that possibly some members of my family bewitched me. i feel embarrassed whilst using this wheelchair. i strongly believe that this is a curse. you see, it is also a challenge to get information on health services. you have to rely on other people to tell you.’ (participant d, loss of function in hands and legs [participant using wheel chair], 03 november 2012) coping strategies four themes emerged regarding the coping strategies used by participants with aad: (1) spiritual support, (2) social support, (3) substance dependency and (4) access to health and rehabilitation services. we elaborate on these themes here using verbatim statements of participants. spiritual support participants found comfort in god as a source of support. the participants could not grieve alone because successful grieving interactions depend on significant human interactions and support from religious groups. participants with religious beliefs coped better with their disabilities than participants with no religious affiliation. the following extracts from three out of five participants indicated that spiritual support helped them cope with their disabilities. ‘my brother in-law introduced me to the local ministry, which i attend every wednesday, and i believe that things will change for me and that i will be independent.’ (participant a, visual impaired, 25 november 2012) ‘many miracles are happening in that church and i hope god will also do miracles for me. i also do not miss any all-night prayer services.’ (participant c, weakened muscles in both legs amputated [participant using artificial limbs and crutches], 03 november 2012) ‘the church played a significant role in my life. my pastor always says to me that he prays for me….’ (participant d, loss of function in hands and legs [participant using wheel chair], 03 november 2012) social support participants stated support groups encouraged them to interact by sharing their distressing experiences. the social interactions increased their self-esteem despite their immediate families and friends who did not fully understand their difficulties. for instance, three out of five participants made the following comments: ‘i began to realise that my situation was much better than that of others…there are others who are worse off … i am lucky that i can see although i cannot move without a wheelchair.’ (participant b, paraplegic [loss of function in the lower part participant using wheel chair], 15 november 2012) ‘sharing my experiences with other disabled persons helped me to open up and get assistance from other physically disabled persons.’ (participant a, visual impaired, 25 november 2012) ‘i thought advocacy organisations could help me to link with other disabled persons who understand my plight better than persons with no disabilities.’ (participant d, loss of function in hands and legs [participant using wheel chair], 03 november 2012) substance dependency two participants explained that they resorted to alcohol and other drugs, such as ‘dagga’, to cope with their disabilities. they explained that these substances make them forget their disabilities. the following extracts from participants show how they used different substances to cope with physical disabilities: ‘when my two legs were amputated, i was frustrated. i made friends in the ward where i was admitted. when they smoked, they would ask me if i smoked and i would refuse. after a while, i joined them and started smoking dagga because i realised that i was getting bored and i was focusing on my disability. many people have approached me to stop smoking … i do not see the importance of pleasing other people. i must please myself.’ (participant b, paraplegic [loss of function in the lower part participant using wheel chair], 15 november 2012) others indicated that they took overdose of medicines, hoping to alleviate the stress: ‘i do go to the hospital for check-up. i only go to see the doctor when i am sick. i take an overdose of painkillers so that i can keep sleeping. i get intimidated to talk with other people.’ (participant a, visual impaired, 25 november 2012) access to health and rehabilitation services participants reported the critical role of health professionals in making sure that disabled people cope with acquired physical disabilities. for instance, four out of five participants made the following narrations: ‘home visits by the social workers opened up my eyes. i did not know that physically disabled people can qualify for grants. i thought i had to be 60 years. also, there are transport barriers to go to the rehabilitation centre because i use public transport, which does not have facilities to accommodate disabled persons.’ (participant d, loss of function in hands and legs [participant using wheel chair], 03 november 2012) ‘i have learnt how to use a wheelchair. i was assisted by a physiotherapist. without the wheelchair, i was crawling on my knees. i could not move from one place to another. the wheelchair makes my movement easy.’ (participant e, both legs amputated [participant using wheel chair], 12 november 2012) ‘occupational therapist gave me a wooden table, which i use for my meals. i was feeling helpless, discouraged and despondent, but now i see the light.’ (participant c, weakened muscles in both legs amputated [participant using artificial limbs and crutches], 03 november 2012) ‘the one-to-one sessions with psychologists and social workers improved my life. the support i got gave me some hope and i understood disability in a different way.’ (participant b, paraplegic [loss of function in the lower part participant using wheel chair], 15 november 2012) discussion the study aimed to identify the participants’ types of physical disabilities, identify the causes of such acquired disabilities and establish how participants defined and coped with their aad. accidents and disease (diabetes) caused participants’ physical disabilities. it could be because accidents are part of our everyday life. for example, participants use cars, motorcycles, bicycles and work on construction sites with various types of machines that can harm the body if one does not use them with care. the study participants defined their disabilities differently: as a curse, pain, punishment and black magic. the divergent definitions of disability are not surprising, because literature has reported that disabled persons have different views of their disabilities (papadimitriou 2008; saltes 2012; tagaki 2016). many disabled people depict their acquired disabilities negatively, as loja et al. (2013) and strømsø (2008) argued. the negative self-image of their disabilities may emanate from high levels of anxiety and depression (mushtaq & akhouri 2016; vanswearingen et al. 1998) as they internalised their disabilities. related to their definitions of their situations, participants indicated different ways they used to cope with disability. four themes regarding participants responses are grouped into three coping strategies: (1) problem-focused (moos 1992), (2) positive emotion-focused and (3) positive and negative emotion-focused coping strategies (chen et al. 2018). only one participant (b) employed problem-focused coping strategies and could work as if he was not disabled whilst the rest (participants a, c, d, & e) employed emotion-focused coping by resigning from the reality of their disabilities. the participants’ responses indicate that they employed positive and negative coping strategies. participants sought support from different sources, such as religious and social remedies. some participants had not yet come to terms with their newly acquired disabilities. they had hope in religious remedies and sought the clergy’s special prayers and counselling and believed in god’s healing power. their belief in god was a source of hope and strength. to most participants, religion provided meaning in their lives, especially because many people’s understanding of disability is linked to religious beliefs (diken 2006). some participants indicated that religious institutions helped them to cope with their circumstances. thus, attending religious meetings was a source of spiritual and psychological enrichment (pelentsov, laws & esterman 2015). a few participants hoped for restoration to their original states through prayers and they drew their hope from the miracles reported taking place in the different churches. the use of religious metaphors in dealing with chronic conditions has been previously reported (stein, lewin & fairall 2007). problem-focused coping strategy participant b had a positive view of his acquired disability and used a problem-focused strategy to tackle the alternative lifestyle regarding the disability. he exhibited a positive, focused coping strategy, shown in his seeking help from health practitioners and rehabilitation to deal with his disability. he, however, indulged in substances. this observation agrees with moos (1992) because participant b sought solutions regarding the acquired disability, such as spiritual, social and health help. this strategy is not surprising because sheldon, renwick and yoshida (2011) suggested that adults who acquire disabilities look for solutions to their challenges as disabled persons. participant b declared that he was lucky to be alive and was positive about his disability because he used his logic to appreciate that being disabled and alive was better than being dead. the positive sentiments observed here agree with moos (1992), who contended that problem-focused individuals use la, are positive in accepting reality and look for actions to face the disability. hence, participant b was positive about living normally and acting within the confines of his disability. the positive attitudes can be understood because he was mature, aged 42 years old. this observation parallels chen et al. (2018), who found that age contributes to choosing problem-focused coping strategies in managing the disability, unlike teenagers. thus, they seek ps to address the problem at hand. positive emotion-focused coping strategy the results show that participants c, d and e showed negative sentiments about their disabilities but sought solutions to manage their emotions concerning their aad. according to chen et al. (2018), these participants used a positive emotion-focused coping strategy. the participants invoked spiritual, organisational advocacy and occupational therapy in this strategy. these coping strategies should minimise the emotions caused by their disability. moos (1992) contended that emotion-focused strategies encompass ca, where individuals avoid the reality of their disability, seek alternative temporal solutions and engage in temporal activities to dismiss reality. positive emotion-focused individuals improve their physiology (kok et al. 2013) and emotional well-being (fredrickson & joiner 2002). positive and negative emotion-focused coping strategy the results show that participant a was negative about the acquired disability. judging from sharing her disability experiences with other people to get some guidance and attending gospel ministry programmes every wednesday, participant a used positive emotions. this observation agrees with chen et al. (2018), who contended that someone looking for help from communities or friends is geared to using positive emotion-focused coping strategies. conversely, the use of drug overdose to keep her sleeping to avoid the emotions is used to categorise her as using negative emotion coping strategies. this categorisation agrees with chen et al. (2018), who asserted that individuals who avoid the reality of the problem are likely to use negative emotion-focused coping strategies. participant a used drugs to mask the disability challenges. this behaviour is common and several studies have reported an association between disability and stress (chen et al. 2018; mushtaq & akhouri 2016; terrill & molton 2018; wongwan 2021). chetty (2011) reported that some people indulge in substances to seek temporary relief. also, given the circumstances, confiding in peers with positive attitudes could assist the substance abusers (ibrahim & kumar 2009). moos (1992) contended that emotion-focused people use ca, seek alternative rewarding activities, which do not solve the problem and expel the reality of the problem. from the study findings, persons with disabilities found comfort in social relationships, families and other support groups who tried to understand their aad. the disabled person’s immediate family members have a social responsibility to accept the disability and work with them day by day. in addition, associating with other disabled persons made them feel comfortable, as they shared experiences with people who could understand their disabled situations better than persons without disabilities (sadiki, radzilani–makatu & zikhali 2015). thus, social support improves well-being among people with aad (elliott, kurylo & rivera et al. 2002), and this support is effective if provided for a long time (devereux et al. 2015). the problem-focused individuals used institutional support from health professionals to cope with their disabilities. thus, institutional support was used as part of the problem-focused coping strategies (roth & cohen 1986). the emotion-focused participants exhibited both positive and negative strategies to assuage the challenges caused by their disabilities. contribution to the body of knowledge the study contributes to understanding the experiences of people living with adulthood-acquired physical disabilities and the coping strategies to deal with their acquired situations. it is an inspiration to all humanity, which is at a potential danger of acquiring physical disabilities, to hope that life can be worth living after acquiring physical disabilities. the study established that participants used problem-focused and positive/negative emotion-focused strategies to cope with their disabilities. notwithstanding the strategies used, there were challenges of access to healthcare, which is a right of every person with acquired disabilities (heapa, lorenzo & thomas 2009; mégret, 2008). other barriers include the lack of information on health services, long distances to health facilities and poor public transport that did not favour disabled persons (beatty et al. 2003; harris et al. 2011; maart et al. 2007). hence, there is a need to sensitise the community to sympathise and assist disabled persons for a worthwhile living. limitations of this study this study explored the coping strategies of individuals with aad. the snowballing method used to select the sample may have missed other disabled persons in the same area who could have provided additional valuable information. the study was conducted with a small sample drawn from one rural community in south africa, which may not represent the country’s varied cultural and religious diversity. the results, therefore, cannot be generalised to other contexts and settings. the study was qualitative, involving few participants and a quantitative study would be needed to explore a large population in the country. in addition, a study to explore the coping strategies of family members taking care of disabled adults may be needed. conclusion the study identified four categories of aad: visual impairment, paraplegia, weakened muscles which led to bilateral amputation, dysfunctional hands, and legs. most participants exhibited negative sentiments towards disabilities and only one was positive. the study established that participants used different coping strategies to deal with their disabilities and participants used different support services to manage or minimise the stress associated with their disabilities. acknowledgements the authors wish to thank all participants, their heartfelt gratitude goes to all persons with disabilities who took part in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.c.s. collected the data for this manuscript as part of her doctoral thesis. i.k. contributed to the conceptualisation of the manuscript and m.c.s. prepared the first draft. both authors contributed substantially to the finalisation of the manuscript. ethical considerations university of venda clearance number (shss/13/sw/01/0625). funding information this research received no specific grant from any funding agency in the public, 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quality of life perceptions’, education and training in autism and developmental disabilities 55(2), 201–214. yoshida, k.k., 1993, ‘reshaping of self: a pendular reconstruction of self and identity among adults with traumatic spinal cord injury’, sociology of health and illness 15(2), 217–245. https://doi.org/10.1111/1467-9566.ep11346888 article information authors: anthony k. edusei1 frances e. owusu-ansah2 joslin a. dogbe3 julia morgan4 kofi sarpong5 affiliations: 1department of community health, school of medical sciences, kwame nkrumah university of science and technology, ghana 2department of behavioural sciences, school of medical sciences, kwame nkrumah university of science and technology, ghana 3department of child health, school of medical sciences, kwame nkrumah university of science and technology, ghana 4honorary lecturer, school of public health (laureate online education), university of liverpool, united kingdom 5the samuel wellington botwey foundation (sweb) foundation, ghana correspondence to: anthony edusei email: eduseiak@gmail.com postal address: private mail bag, university post office, kwame nkrumah university of science and technology, ghana dates: received: 07 nov. 2013 accepted: 05 nov. 2014 published: 16 july 2015 how to cite this article: edusei, a. k., owusu-ansah, f.e., dogbe, j. a., morgan, j., sarpong, k., 2015, ‘perspectives in musculoskeletal injury management by traditional bone setters in ashanti, ghana’, african journal of disability 4(1), art. #97, 8 pages. http://dx.doi.org/10.4102/ajod.v4i1.97 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. perspectives in musculoskeletal injury management by traditional bone setters in ashanti, ghana in this original research... open access • abstract • introduction • methods    • study setting • research design    • piloting    • sampling       • data collection       • data management and analysis       • ethical considerations • trustworthiness    • interview tools and handling of data    • validity and reliability • results    • perspectives of the traditional bone setters       • the practice of traditional bone setters       • diagnostic procedures and its rationale       • therapeutic materials used:       • therapeutic procedures    • spirituality and traditional bone setting       • strengths of the traditional bone setters       • weaknesses of the traditional bone setters       • challenges of the traditional bone setters    • users’ perspectives       • perceptions about the services of traditional bone setters          • the healing procedures and methods of the traditional bone setters          • users’ perspective of strengths, weaknesses and challenges    • discussion       • implications of findings       • perspective of providers and users of traditional management of musculoskeletal injuries       • public health relevance of the research       • limitations of the study       • recommendations • conclusions • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: the popularity of the services of traditional bone setters (tbs) in ghana as an alternative health care requires exploration and documentation of the perspectives of providers and users. objective: to explore and document the perspectives of providers and users of the services of tbs in the management of musculoskeletal injuries in the ashanti region, ghana. methods: from the social constructivist and qualitative approach, in-depth interviews were used to explore the perspectives of eight tbs and 16 users of their services, selected purposively through snowballing. thematic content analysis (tca) was employed. results: high recovery rate, warm reception, prompt attention, and the relatively lower charges, are reported to motivate the patronage of the services of tbs for the management of fractures in the legs, arms, ribs, joint bones dislocations, waist and spinal cord problems. the tbs combined traditional and orthodox procedures, using plant and animal-based materials, beliefs, spirituality (god-given) and physical therapy in the management of musculoskeletal injuries. no adverse experience was reported by either the providers or users of the traditional management methods. conclusion: with plant and animal-based materials, tbs are observed to combine traditional and orthodox procedures to confidently manage musculoskeletal injuries to the satisfaction of their highly motivated patrons. although over 60% of the tbs attribute the healing power behind their practice to god, the rest do not discount the role of spiritual therapy. further studies expanded to include the perspectives of non-users of the services of the tbs will authenticate the findings of this study. introduction top ↑ injuries are a public health problem in developing countries (mock, forjuoh & rivara 1999), with an anticipated increased rate and associated disabilities (murray & lopez 1996) as a result of increased use of motorised transport. indeed, the human suffering emanating from injury-induced disability (mock et al. 2003) in developing countries calls for a critical appraisal of the management strategies of musculoskeletal injuries, including those of traditional bone setters (tbs), as a result of the high patronage of such services because of the relatively lower cost, familiarity, and the carried notion of their indispensability or desirability (ariés mercel et al. 2007; dada et al. 2009; dada, yinusa & giwa 2011; nwachukwu et al. 2011; nwadiaro et al. 2008; onuminya 2006; olaolorun, oladiran & adeniran 2001; thanni 2000), despite reported associated complications such as non-union, malunion, extremity gangrenes, osteomyelitis, and sepsis (dada et al. 2009, 2011; onuminya 2004). the major causes of injuries in ghana as established by mock et al. (1999) are road traffic accidents, burns and falls. segregating the data into urban and rural areas, mock et al. (1999) have also reported that in both locations transport-related injuries are the leading mechanism of injury, accounting for 16% of all urban injuries and 10% of all injuries in the rural areas, with male predominance and the younger ages (< 15 years) and older ages (> 45 years) mostly affected. disability resulting from transport-related injuries are, however, higher in older adults (mock et al. 1999). transport-related injuries which rank topmost among the injuries requiring the services of tbs are reported to be more severe than the other types of injuries in terms of the associated mortality, length of disability and economic hardships (mock et al. 1999). normally, the hospital is the first point of call for primary fracture management, but in ghana and elsewhere on the african continent many injured persons never seek formal medical care (dada et al. 2011; nwachukwu et al. 2011; nwadiaro et al. 2008; onuminya 2006; olaolorun et al. 2001; mock et al. 1999). ariés mercel et al. (2007) in a study on fracture treatment by bone setters in the central region of ghana established that over a period of three months, 14 patients diagnosed with fracture left hospital to seek treatment by bone setters. classified among these traditional healers were persons who use herbs, animal and mineral substances or other methods, and priest-healers who use supernatural powers to provide healthcare. the world health organisation (who) defines traditional medicine as: ... the sum total of the knowledge, skills and practices based on the theories, beliefs and experiences indigenous to different cultures, whether explicable or not, used in the maintenance of health, as well as in the prevention, diagnosis, improvement or treatment of physical and mental illnesses. (who 2008) and a traditional healer as: ... a person who is recognised by the community where he or she lives as someone competent to provide health care by using plant, animal and mineral substances and other methods based on social, cultural and religious practices. (who 2000) before the introduction of orthodox medicine in africa, the continent's traditional medicine existed and has since been widely practised (abdullahi 2011; fokunang et al. 2011) and promoted by traditional healers (ariés mercel et al. 2007; kennedy 2011). african traditional medicine which is known to be the major type of health care for many (abdullahi 2011; fokunang et al. 2011; kennedy 2011) is described as a holistic treatment achieved through a combination of spiritual beliefs, herbs, animal and mineral products (abdullahi 2011; kennedy 2011). fokunang et al. (2011) indicates further that the practice is based on knowledge and beliefs, incorporating spiritual therapies, manual techniques and exercises, applied singularly or in combination. these knowledge and skills are passed on from generation to generation (kennedy 2011). another important feature of african traditional medicine is its ethnocentric, broad and varied nature (abdullahi 2011). evidence also abounds to establish the link of spirituality with african traditional medicine. the african peoples’ worldview is basically spiritually oriented, with no clear demarcations between the sacred and the secular. spirituality permeates all aspects of the african way of life. kennedy (2011) sums it up by the assertion that spiritual belief such as witchcraft influences african traditional medicine, and, because most of the native people attribute disease causation to witchcraft, attempts at healing by traditional healers would begin with a determination of the cause. in many african cultures, diseases which fail to respond to initial treatment are stigmatised in the society, and believed to be caused by supernatural powers and are therefore reported to the traditional healers for treatment (abdullahi 2011). this observation gives credence to the fact that traditional african medicine is aligned with spirituality. as a country with overreliance on traditional medicine and limited healthcare workers as a result of brain drain (friedman 2004; who 2008), yet overburdened with an increase in traumatic injuries because of rapid urbanisation and the growing dependence on motor vehicles (ariés mercel et al. 2007; quansah, afukaar & salifu 2001), ghana needs a critical evaluation and documentation of the traditional management of musculoskeletal injuries by tbs who remain a valuable health care resource for many. for this purpose, this research sought to answer two key questions: ‘what are the beliefs, methods, experiences and the principles applied by tbs in the management of musculoskeletal injuries in the ashanti region of ghana?’ and ‘what are the perspectives of users of the services of tbs in respect of their beliefs, experiences and the reasons regarding the use of such services?’ therefore the specific objectives of the study were to ascertain through in-depth interviews the beliefs, methods, experiences and principles applied by the tbs in the ashanti region of ghana in the management of musculoskeletal injuries, whilst assessing the beliefs, experiences and reasons for the use of the services of tbs in the management of musculoskeletal injuries in the study area. the findings of the study will contribute significantly to augment the limited publications on traditional medicine in ghana. furthermore, the objectives of the who congress on traditional medicine held in beijing, china from 7‒9 november 2008 to share information and experience on research, education, and practice of traditional medicine, and to promote the proper use of traditional medicine will be achieved (who 2008). methods top ↑ study setting the study area was the ashanti region, the most populous and most centrally positioned among the 10 regions of ghana. the total land area of the region is approximately 24 390 square kilometres representing 10.2% of the land area of ghana (ghanaweb 2012). as the most populous region, the population forms 19.1% of the total population of ghana with females constituting 49.8%, as per the 2000 population census. the majority (51.3%) of the people in the region live in urban settlements. ashanti region has won for itself the accolade of ‘centre of culture’ and has 33 traditional councils. in terms of traditional authorities, each council is headed by a paramount chief who is the custodian of the culture. all the paramount chiefs owe allegiance to the asante king, otumfuo the asantehene, who doubles as the head of the asanteman council as well as the head of the kumasi traditional council (ghanaweb 2012). the region is endowed with rich natural resources and people with high entrepreneurial acumen who engage in economic activities like subsistence food crop farming, cash crop (cocoa) farming, petty trading, and artisanal work in the construction and mechanical industry. although almost all the ethnic groups in ghana are represented in the ashanti region because of its central position and its rich natural resources, the dominating ethnic group are the akans, with twi as the widely spoken language. the high doctor to patient ratio of one to 40 000 people (ministry of health [moh] 2000) contributes to the continued overreliance of people on ‘traditional’ medical care (ariés mercel et al. 2007). research design top ↑ the study adopted the qualitative approach, using an in-depth interview for a better understanding of the perspectives of tbs and users of their services. piloting recognising the importance of piloting in any field research (polit, beck & hungler 2001; teijlingen & hundley 2001) the interview schedule was piloted on one provider and one user of tbs, and subsequently modified for the main study. sampling eight tbs and sixteen users of their services were selected using purposive and ‘snowball’ sampling, that is, asking the whereabouts of another person who provides such services (heckathorn 2002): following the identification of the first tbs, the others and their patrons were selected through snowballing. as the study was purely qualitative meant to ‘discover’ rather than ‘measure’ perspectives on traditional medical practice, random sampling and sample size were not considered critical (depaulo 2000), although a theoretical sampling approach (green & thorogood 2009) was used to reach the sample sized used. potential interviewees had to be searched for. data collection the in-depth interviews were administered by the researcher, using the interview schedules as a guide. each interview was preceded by the provision of the research background by reading and interpreting the information sheet, followed by the signing of the consent form. after consent had been given, the interview took place separately for each tbs and two users of his or her services, maintaining some level of privacy to avoid one influencing the other. the proceedings of the interviews were recorded with a digital voice recorder (vr-p2340new). the researcher began the interview by making notes on gender, age and non-verbal communications and personal observations about the interviewee. for the users of the services of the tbs, the parameters examined were beliefs, experiences and reasons for using tbs; whilst for the tbs, the parameters covered were beliefs, methods, experiences and principles applied in the management of the musculoskeletal injuries. data management and analysis the recorded interviews on the digital voice recorder were kept under lock and key and later transcribed. using thematic content analysis (aronson 1994; green & thorogood 2009; marks & yardley 2004), the transcribed interviews were analysed by first coding them according to the responses to the key questions, categorisation and subsequent grouping under the broad thematic areas for the identification of inherent patterns. ethical considerations ethical approval to establish the non-invasive nature of the study was sought from the committee human research and publications ethics (chrpe) of the school of medical sciences (sms) and komfo anokye teaching hospital (kath), kwame nkrumah university of science and technology (knust), ghana, and the university of liverpool committee on research ethics. following the approval of the chrpe in ghana on 16 may 2012 approval from the university of liverpool was also obtained. following the initial contacts for recruitment in the study and the subsequent appointment with them for interviews, the interviewees were informed about the research and given consent forms to sign to confirm their readiness to be interviewed. they were assured of the confidentiality of the information being sought. trustworthiness top ↑ interview tools and handling of data in-depth interviews were conducted separately for the eight tbs and 16 users of their services, using schedules prepared on the basis of the objectives of the research. the interviews were conducted by the researcher without any interpreter. with the permission of the interviewee, the interviews were recorded using a digital voice recorder (vr-p2340new). validity and reliability reliability and validity are important characteristics of qualitative research (green & thorogood 2009), with reliability essential in determining the validity of the data (shuttleworth 2008). the reliability and validity of the information generated was ensured as follows: interviews were conducted and recorded using a digital voice recorder and transcribed by the researcher, writing notes where possible, and comparing the data with transcripts to validate information captured. results top ↑ perspectives of the traditional bone setters the practice of traditional bone setters this broad theme examines issues related to initiation and experience in the practice, diagnostic and therapeutic procedures, the healing experience, principles and the healing powers behind the practice. all the tbs reported that their practice is family-based, and a gift from god handed over from one generation to another within the family: ‘the business [traditional bone setting] was not learnt through apprenticeship. it is a gift from god for the family. god gave it to my grandfathers. my father came to continue, and now it is our turn to continue’. (p6) the common musculoskeletal injuries the tbs manage are fractures in the legs, hands, ribs, collar bones, spinal cord and waist bones, joint dislocations, and neck bone injuries. only two tbs indicated their ability to treat head bone injuries, although with caution, provided the victim has received the attention of a medical officer, and has been certified not to be in any life-threatening situation. the part-time bone setters, apprehensive of the legal implications of complications resulting from their management, however, restrict their management to only injuries in the legs and arms: ‘exactly! the hand, the legs, the spinal cord, ribs; as long as it is a case of bone fracture, even if it is the skull, we manage it’ (p3): ‘i treat mostly the fractures in the hands and legs. as i have told you i am not doing the work for full-time, so i don’t try any complicated case’. (p8) it is noteworthy that all the tbs interviewed demonstrated confidence in their healing capabilities for any injury case for which they were satisfied through their investigations that the cause is not attributable to supernatural powers or witchcraft. all of the tbs were candid enough to indicate that they would refer road traffic accident victims first to the hospital for emergency treatment before they will attempt management with traditional methods to avoid complications. they all ascribe the healing power behind their treatment to god, although one of them did not ignore the role of ‘spiritual powers’: ‘i am very confident about what i am doing, because i am not afraid of any type of injury presented to me for management’ (p6); ‘for us our backbone is god. we have nothing like some spiritual powers which are giving us directions as to what to do’ (p3); ‘as for that i will say we have no supernatural powers backing us. we are healing people through god's healing powers’ (p4): ‘spiritual backing is required in the practice because not all injuries occur by accident, some are caused by evil forces, and you need the spiritual backing to treat, otherwise the demons can disturb you as a healer’. (p5) diagnostic procedures and its rationale the study revealed that more than half of the tbs use conventional medical approaches such as diagnosis before treatment begins, and use conventional bandage and latex gloves, and pain-killers. the diagnostic procedures include enquiries into the cause of the injury, touching and feeling with the fingers to ascertain the nature and severity of the fracture, and the use of x-ray photographs to ascertain the nature and anatomical site of the fracture. further enquiries into these practices established that it is in response to recommendations of health workers who patronise the services of the tbs, or skills acquired through long years of experience. the rationale behind the initial investigations is to ascertain the nature and extent of injuries, to ensure that they do not entertain cases of road traffic accidents that may suffer internal bleeding which is beyond their capabilities, and to avoid providing treatment for thieves who have suffered gunshot wounds. ‘for an accident victim, if the doctor has not proven beyond doubt that there has not been any internal bleeding, i will not attempt to handle such a person’ (p1). therapeutic materials used: the therapeutic materials used by the tbs appeared universal among all of them, except four who gave indications that besides water and shea butter they use plant or animal-based preparations. three respondents were adding a black powdery substance to the shea butter before applying the ointment to the injured parts for massaging. one said it was tortoise shell which is burnt and ground into powder. two others confirmed using plant parts which are also burnt and supplied from the northern part of ghana. enquiry on the reason for the use of the shea butter or lard and water revealed that it was to facilitate the physical therapy (massaging) aspect of the management of the injury. with respect to the animal or plant-based preparations, one tbs used the analogy of welding two metal pieces with electrodes to indicate it is used as the active binding substance: ‘we use tree parts and even animal parts (tortoise). you can burn the case of the tortoise to char and grind it into powder and mix it with animal lard (from snake or cattle), or shea butter and apply to the injured parts’. (p5) ‘as for the medicine, i am not in a position to tell you anything about it. moreover, it is not prepared here. it is brought from the northern part of ghana for us to use. it is a black powdery substance prepared from a burnt tree root’. (p1) the other materials used by all the tbs are wooden splints and little mats prepared from palm fronds. to avoid shifting and subsequently malunion or non-union of the broken bones the tbs use these materials to support and stabilise the fractured bones, particularly the single bones of the upper arm and the thigh after setting them. therapeutic procedures generally, therapy begins with the rubbing of the affected part with warm water, followed by the application of the shea butter (with or without herbal or animal preparation) and massaging, then bandaging (with a wooden splint or mat support if necessary). the nature, length of stay of the bandaging depends on the nature of the injury and the affected bone; the single bones like the thigh and upper arm bones which are not frequently disturbed, stay longer. apart from one respondent who would offer treatment four times, morning and evening for four days for women, and only two days for men, all the other tbs would provide continuous and daily treatment from the start until the injured is totally healed. the explanation provided by the tbs for the difference in the treatment period for women and men was that increased activity and the softer tissues on the part of the woman may disturb the bandaged parts, thus requiring more frequent attention: ‘if you are a female i give you treatment for four times; morning and evening for four days. if it is a male who presents any degree of fracture, i will provide treatment for only two days; morning and evening of both days, and that is all’. (p7) spirituality and traditional bone setting although all the tbs attributed their therapeutic powers to god, and possibly their skills in massaging regularly to set the fractured bones, they did not rule out spirituality in the cause and treatment of injuries. one tbs indicated that in their family practice they are taken through some spiritual initiation involving the recitation of special prayers which enable them to identify injuries caused by evil forces. he confirmed this assertion with this quote: ‘yes! because not all injuries occur by accident; some are caused by the devil, and you need the spiritual backing to treat it otherwise the demons can disturb you the healer’. (p5) the perception among the tbs is that if the injury is caused by an evil force, healing becomes difficult or almost impossible. to them this is where they need spiritual powers to annul the effect of the evil forces to facilitate the healing process. the tbs were not oblivious of the fact that the general perception carried by most people who are hesitant in accessing their therapeutic services is that they depend on supernatural powers in providing healing. it is in the attempt to disabuse people's minds of this perception that they provide the care in the open. strengths of the traditional bone setters whereas two of the tbs were emphatic in stating that their strength is of divine origin, the strength of the rest apparently lies in their total dedication to work, patience and respect for their patrons, commitment to work, minimal charges, and the high recovery rates which are widely perceived and propagated by their patrons. ‘i will say that i derive my strength from god almighty. it is in him we derive our being and do everything’ (p8). weaknesses of the traditional bone setters in their own estimation, the tbs do not have any weakness in the performance of their duties as reflected in these expressions: ‘i don’t think i have any weakness, safe sickness which will disable me’ (p4). in addition, participant 7 stated: i don’t really have any weakness, but if i get any help from any source it will be welcome to enable me provide accommodation for those who come for treatment. challenges of the traditional bone setters the major challenges confronting the tbs in the discharge of their duties were the reported inadequate space to operate from, and to provide accommodation for their clients coming from far. of major concern to them is the unavoidable arrangement to move the injured to and from the healing centre to receive medication, which retards the healing process as the set broken bones may be frequently disturbed. in the course of providing services, parts of the bandaged limbs become swollen, and this often attracts the condemnation of health workers and some family members, friends or acquaintances of the injured. another reported challenge is with respect to flesh getting stuck on the surfaces of the fractured bones, thus preventing a perfect contact when the broken bones are joined up, and subsequently making the healing almost impossible. in their view the single bones in the thigh and the upper arm take longer to heal, because there is often lack of proper support for the broken bones in these parts of the body. they also opined that fractures that are caused by evil forces are difficult to heal, and requires a spiritually strong person to detect and address these cases (table 1). table 1: background information of users of the services of traditional bone setters. users’ perspectives perceptions about the services of traditional bone setters the results of the study indicate that positive testimonies regarding the outcome of services provided by tbs, experiences of friends, family members and close acquaintances, dislike for plaster of paris (pop), perceived longer periods of recovery from the services provided at the orthodox health facilities, motivate people to seek the services of tbs. most participants patronised the services of the tbs, fully confident that they would receive total healing in much shorter time compared to orthodox medical treatment. indeed, almost all study participants, except three, had first sought the care of the orthodox health care providers, but ended up with the tbs as a result of the perceived slow healing process; ‘you know the hospital is where we’ll go first, but they could not treat it, and that is why i have brought it here’ (p5.1): apart from what i have experienced and witnessed myself, many have also sought the services of the tbs and are full of admiration and praises because they received their healing. (p6.3) one significant revelation from the study is that all the participants reported experiencing significant improvement in their situation within one month of accessing the services of the tbs. ‘because my arm was dislocated, i suffered severe pains, but since the first day she managed to put it back into the socket, the pains went down drastically’ (p3.2). the healing procedures and methods of the traditional bone setters with respect to the procedures and methods used, the participants affirmed what was said by the tbs. they begin with the initial diagnosis through a series of questions, whilst feeling with their fingertips, with some using x-ray photographs to ascertain the type and cause of injury. the purpose, as reported by the users, is for the tbs to evaluate the case bearing their capabilities and skills in mind, and once they were certain they could treat it, they would begin to offer services. the tbs were reported to use water (warm for most of them), shea butter (a few adding a black powdered substance), and wooden splints or small mats used as support before bandaging. apart from one lady bone setter, all the tbs would provide daily or regular consultations and service until the injured is totally healed: ‘they use shea butter and water, and then bandage. these are just the materials they use to massage, and by god's grace they are able to provide healing to the people’. (p1.1) users’ perspective of strengths, weaknesses and challenges in the view of the users of the services of the tbs, their strength lies in low charges, warm reception, patience and respect in dealing with their clients, the acceptance of the practice within the socio-cultural context of the people, and their ability to achieve a positive outcome using simple technology. ‘oh! they are very good, particularly to come to realise that they do not use any sophisticated technology, yet are able to achieve marvellous results’ (p4.2). none of the users of the services of the tbs reported anything negative about the services. however, four of them expressed concern about the hygiene situation in the environment in which they operate. in their view, some appreciable level of improvement would be advisable: apart from the concerns about the one towel and bucket used for many patients, and the bad practices in treating the sores, and the unclean environment most of them operate from, i don’t think there is any negative thing about the practices of the traditional bone setters. (p3.2) discussion implications of findings the study appears to highlight traditional bone setting as an indigenous and indispensable practice (thanni 2000). the practice and training appears to be preserved by the family (onuminya 2004; kennedy 2011) and passed on from generation to generation (dada et al. 2011). the providers and users of the services of the tbs seemed satisfied and confident with the outcome of this traditional injury management method, and were ready to share their experiences with others. a major inference from the study findings is that traditional injury management which is reported to be widely practised (abdullahi 2011; fokunang et al. 2011) remains valuable and acceptable as an alternative health care. perspective of providers and users of traditional management of musculoskeletal injuries the findings from the tbs and users interviewed corroborate the work of mock et al. (1999) that falls and transport-related injuries are the major causes of injuries and disabilities. the results of the study indicate that the providers and users of the services of the tbs have positive perceptions about the services as a result of the satisfaction they all derive from this alternative healthcare. several reasons can be assigned to this perception, but perhaps the most important are: the high recovery rate, relatively lower costs, familiarity and cultural acceptability, dislike for the pop, the positive experiences regarding the outcome of the services of the tbs shared by friends, acquaintances and family members, warm reception, respect for the clients and the frequent follow-up, which are also reported in other studies (ariés mercel et al. 2007; dada et al. 2009, 2011; nwachukwu et al. 2011; nwadiaro et al. 2008; onuminya 2006; olaolorun et al. 2001; thanni 2000). the high recovery rate reportedly achieved by the bone setters may be because of the fact that they would always establish the causes and assess their capability in respect of that particular case before attempting to provide healthcare. over 80% (13 out of 16 users) had actually sought orthodox healthcare before consulting the tbs because of slow and discouraging treatment outcome, disproving earlier held notions that in ghana and elsewhere on the african continent many injured persons never seek the services of the orthodox health care facilities (dada et al. 2011; nwachukwu et al. 2011; nwadiaro et al. 2008; onuminya 2006; olaolorun et al. 2001; mock et al. 1999). indeed, the results of the study by ariés mercel et al. (2007) in central ghana which established that over a period of three months 14 patients with various forms of fractures who were receiving orthodox care in the hospitals left for treatment by tbs, is repeated in this study. this seems to affirm the fact that for most people, the tbs is the ‘last stop’ for injury management in ghana and other african countries. the tbs revealed that they are in general supportive of the practice where the road-traffic injury cases would first report to and receive some attention at the hospital before coming to them. to them this would reduce the chances of any complication of their management, thereby improving their outcome. generally, this practice of the tbs, which appears to have developed after several years of experience, is commendable and is indicative of their preparedness to compliment the orthodox healthcare in respect of injury management. the users of the services of the tbs do not consider the methods and processes of diagnosis and healing invasive, uncomfortable, and cumbersome. they in fact expressed high confidence in the safety and efficacy of the treatment: herein lies the strength of the tbs. indeed, the study found that the diagnostic and therapeutic procedures employed by the tbs are not at variance with orthodox medical procedures. the physical therapy aspect of the treatment by the tbs may be contributing significantly to the healing process, and that may explain why, although the procedures applied by them appear simple, people are healed. although the practice of traditional bone setting is reported to be shrouded in mystery and spirituality (abdullahi 2011; dada et al. 2011; kennedy 2011) in certain places in nigeria and elsewhere in africa – a point also asserted by two of the tbs – the healing power is generally attributed to god. this suggests that in a highly religious country like ghana, traditional management can be improved and promoted as an alternative health care. it is significant to note that none of the users of the services of the tbs expressed any negative feelings about the services received in response to a related question, except some concerns in relation to hygiene in their premises and practice raised by four out of the 16 participants. the major challenge which needs consideration by policy makers concerns the matter of accommodation which was raised by both the tbs and the users of their services. public health relevance of the research the findings of this study can help the government of ghana to develop a good public policy which can incorporate and strengthen the services of tbs (naidoo & wills 2009). the high recovery rate and patronage reported in this study should motivate further investigations into traditional medicine in ghana to generate more information to facilitate the total integration into the national healthcare system as being advocated by the who (2008). the results of the study provide useful information regarding the services provided by tbs in the management of musculoskeletal injuries by complementing the knowledge in this practice, thereby providing the basis to educate and encourage members of the public who remain sceptical about the safety and value of their services. at the same time, the information obtained should inform the health professionals who have little or no regard and recognition for traditional medicine, and for that matter traditional bone setting as an alternative healthcare, to begin to acknowledge and appreciate its practice in the overall health care system of ghana. limitations of the study this research targeted a limited number of the tbs and the people using their services at the time of the study. for this reason, it could not capture users of such services who might have discontinued as a result of complications or disappointments. it is therefore recommended that further studies should take the form of a community-based survey that will elicit the views of the community regarding this indigenous practice from a broader perspective. in addition, the inclusion of a control group (persons who used only the orthodox medical services) can facilitate a more objective comparison of outcome, patient satisfaction, and possible complications in future studies. recommendations based on the perceived good outcome of the services rendered by the traditional bone setters, the ministry of health of ghana should support a more comprehensive research into traditional medicine for the purpose of its integration into the national healthcare delivery system in accordance with the recommendation by the who (2008). conclusions top ↑ this qualitative research has revealed that tbs combine traditional and orthodox procedures, using plant and animal based materials to manage musculoskeletal injuries. expressing confidence and satisfaction, the tbs and users of their services perceive the traditional method of managing musculoskeletal injuries as good because, in their view, the method is safe and effective. as opined by the users of the services of the tbs, patronage is motivated by the low costs, high recovery rate, respect and tender care. with encouragement from friends, relatives, acquaintances and neighbours or community members who have experienced the services of tbs, the injured access their services confident of being healed. in-depth studies that will involve non-users to capture the broader perspectives of community members are recommended to enhance the value of the information generated. furthermore, results of such studies can complement the limited information on tbs. acknowledgements top ↑ we would like to acknowledge with a deep sense of appreciation the financial support from the netherlands organisation for international co-operation in higher education (nuffic) for the academic programme culminating in this research. a special vote of thanks also goes to the tbs and the users of their services who availed themselves and gave their consent to participate in the study. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions a.k.e. (kwame nkrumah university of science and technology) was the project leader and was responsible for the design and conduct of the research, transcription and analysis of the data, and the preparation of the manuscript. f.e.o-a. (kwame nkrumah university of science and technology) and j.d. (kwame nkrumah university of science and technology) contributed in shaping the manuscript by contributing to the editing and finalisation. j.m. (university of liverpool) contributed to the study design, data analysis and the preparation, reading through each stage for correction. k.s. 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studies’, social research update issue 35, viewed 7 december 2012, from http://sru.soc.surrey.ac.uk/sru35.html thanni, l.o., 2000, ‘factors influencing patronage of traditional bone setters’, west african journal of medicine 19(3), 220–224. world health organization (who), 2000, traditional and modern medicine: harmonising the two approaches, world health organisation, geneva. world health organization (who), 2008, congress on traditional medicine, viewed 29 march 2014, from http://www.who.int/mediacentre/events/meetings/trad_medicine/en/ abstract introduction research methods and design results discussion conclusion acknowledgements references appendix 1 footnote about the author(s) skye n. adams department of speech pathology and audiology, faculty of humanities, university of the witwatersrand, johannesburg, south africa nthabiseng matsimela department of speech pathology and audiology, faculty of humanities, university of the witwatersrand, johannesburg, south africa citation adams, s.n. & matsimela, n., 2023, ‘feeding children with autism in south africa: the teachers’ perspectives’, african journal of disability 12(0), a1252. https://doi.org/10.4102/ajod.v12i0.1252 original research feeding children with autism in south africa: the teachers’ perspectives skye n. adams, nthabiseng matsimela received: 11 may 2023; accepted: 11 sept. 2023; published: 02 nov. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: over 80% of children diagnosed with autism spectrum disorders (autism) exhibit disruptive behaviours during mealtimes, highlighting the need for personalised care. in south africa, teachers often take on the responsibility of feeding due to resource constraints and the time children spend at school. moreover, children with autism have unique and individualised feeding requirements, which many teachers may not have the necessary training or skills to address adequately. objectives: to explore the ways in which teachers of autistic children manage feeding difficulties in the classroom. method: a qualitative research design was employed using semi-structured interviews. eight teachers were interviewed on feeding autistic children between the ages of 3 years 9 years in johannesburg, south africa. data were transcribed and analysed using thematic analysis. results: the findings revealed that teachers encountered distinct challenges when it came to feeding autistic children in the classroom, particularly concerning the management of associated feeding difficulties. teachers employed several strategies to encourage eating in the classroom setting including: (1) bolus modification, (2) behaviour modelling, (3) positive reinforcement and (4) offering choices and alternatives. conclusion: the study concludes the need for specialised support and training for teachers to address the individualised feeding needs of children with autism. implementing targeted interventions and providing resources for teachers could enhance their abilities to effectively support children with autism during mealtimes and promote a more inclusive classroom environment. contribution: this study highlighted the importance of including the teacher in the multidisciplinary team when managing the feeding challenges in children with autism. keywords: autism; classroom; feeding support; teachers; south africa. introduction autism spectrum disorder (autism) is a complex neurodevelopmental disability characterised by deficits in social communication and interaction, alongside restricted and repetitive patterns of behaviour, interests or activities (rapin & tuchman 2008). approximately 89% of the autism population may present with food selectivity, sensory processing difficulties and tactile defensive behaviours that can negatively impact growth, development and nutritional intake and if left untreated may become chronic (nadon et al. 2011; seiverling et al. 2018; zhu & dalby-payne 2019). children with autism often experience feeding difficulties, such as food sensitivities and aversions to certain textures, temperatures or smells, which are usually evident in early childhood (ausderau & juarez 2013; viviers et al. 2020). consequently, caregivers of young children with autism and associated feeding difficulties often resort to employing targeted interventions and strategies to address and improve these challenges (ausderau et al. 2019; ledford, whiteside & severini 2018; schaaf et al. 2014). however, as children begin school, the responsibility of feeding is no longer primarily the caregiver’s concern but the teachers’. currently, there is a paucity of research on teacher’s utilisation of feeding strategies for children with autism (knox et al. 2012). in this article, the authors shed light on the complexities surrounding feeding children with autism and associated feeding difficulties, specifically from the viewpoint of their teachers. while the experiences of these teachers are similar to those of teachers globally, the authors aim to gain insights from an afrocentric perspective by incorporating culturally and contextually relevant feeding strategies. upon starting school, teachers assume the responsibility of providing food and managing mealtimes for the child, often spending more time with them than their caregivers during the week, approximately five out of seven days, between six and eight hours each day (knox et al. 2012; marsh et al. 2017). a typical south african classroom of children with autism usually involves a teacher and a teaching assistant (donohue & bornman 2015). the role of the teacher is to facilitate all teaching and assistant to support the teacher and specific learners. in south africa, inclusive education has faced challenges, leading many children with autism to attend specialised schools (nthibeli, griffiths & bekker 2022; sumbane et al. 2023). children in these classes present with a range of needs, attributes, experiences and abilities, with children and teachers coming from a variety of cultural, religious and linguistic backgrounds (forghani-arani, cerna & bannon 2019). despite this diversity in the classroom, very little is known about the ways in which teachers navigate this space when dealing with feeding difficulties in this environment. many children with autism will require specialised care to manage their feeding challenges and may require consultation with healthcare professionals such as speech-language therapists (slts). however, there is a shortage of slts in south africa, and with the high prevalence of feeding difficulties in children with autism, teachers are often required to provide supportive feeding strategies without the assistance of the slts or availability of resources (abubakar, ssewanyana & newton 2016; de vries 2016; sumbane et al. 2023). this is in contrast to other countries such as australia or france, where teacher support is available through government policies and guidelines that call for further teacher education and allocation of resources to better support children with autism (boujut et al. 2016; clark et al. 2020). research where teachers have high levels of support and training with autism has indicated that they are less burdened and experience less negative emotional responses (boujut et al. 2016; clark et al. 2020). thus, there is a need to understand the ways in which teachers manage the feeding difficulties in children with autism, the supports and resources available to them, and the ways in which the strategies are employed within a school setting. effectively managing feeding difficulties in children with autism demands consistency, time and effort and cannot be achieved in isolation or confined to one context only (e.g. school, therapy or home) (kerzner et al. 2015; van den hoek-engel et al. 2017). seiverling et al. (2012) investigated the impact of a home-based parent behavioural skills training programme aimed at enhancing the treatment of food selectivity in children with autism. the behavioural skills taught to parents encompassed taste exposure, escape extinction (which entails not allowing the child to avoid disliked foods) and fading (gradually reducing the level of assistance required for a specific task). the findings demonstrated a positive outcome in terms of increased food consumption among all children in the study after undergoing the treatment. however, it was evident that these strategies were not already a natural part of their behaviour, and there were limitations in integrating these behaviour techniques into family mealtimes. the study emphasised the necessity for parents to receive targeted training to effectively employ these techniques and seamlessly integrate them into their mealtime routines and rituals. furthermore, the study emphasised the need to tailor interventions to the family’s specific routine, beliefs and rituals (bornstein 2013). studies have shown that feeding management may prove ineffective if it fails to consider and respect the specific needs, cultures, beliefs and values of the families involved (adams, dadabhay & neille 2021; ausderau et al. 2019; ochs & shohet 2006; suarez, atchison & lagerwey 2014). although this is true for families, teachers may hold their own beliefs and values that they bring to the classroom, and the ways in which these are incorporated require interrogation. currently there is limited research around the specific interventions that teachers working with children with autism can implement, specifically around managing feeding and nutritional challenges in the classroom. the results of this study are expected to make a significant and pertinent contribution to the understanding of autism in both the south african context and on a global scale. the study will provide insight into the strategies used by teachers to manage feeding difficulties in children with autism in south african classrooms, considering the lack of slts and available resources for support. research methods and design a qualitative methodology using semi-structured interviews was employed to gain a better understanding of the ways in which teachers manage feeding difficulties of children with autism in the classroom. teachers were purposively sampled according to the following criteria: (1) previous or current experience feeding children with autism, (2) currently working at an autism school in johannesburg. teachers had to be working with children: (1) who had primary diagnosis of autism and (2) who were between the ages of 3 years and 9 years. teachers were not required to have any specific length of experience but had to be working at the school for a minimum of six months. the age range of the child was chosen to approximate children who may experience feeding challenges and those of school age for homogeneity of the sample. ethical considerations prior to conducting the interviews and after obtaining clearance from the university of the witwatersrand health research ethics committee – non-medical (hrec non-medical) (sta_2020_07), a pilot study was conducted. thereafter, letters of permission were sent to the school principals of four government autism schools in johannesburg and received responses from two schools which had granted permission for participation. permission from the site was received from them prior to commencement of the interviews. the principal sent a message to all teachers at their schools and asked them to identify teachers who met the inclusion criteria. details of the study and informed consent letters were circulated and teachers were asked to contact the researcher if interested. following the recruitment of participants and the coronavirus disease 2019 (covid-19) lockdown that was implemented in march 2020, all interviews were conducted telephonically after verbal consent was obtained. all study participants were informed of their right to refuse participation and to stop the interview at any time. all personal information such as names and specific locations were left out of the transcription to ensure anonymity and confidentiality. participants eight teachers participated in the research with previous and current experience ranging from 8 months to 8 years. participants had different home languages, although all were fluent in english and the medium of instruction at both schools is english. the age of participants ranged from 25 years to 45 years, and all participants were female. all children in the classes had a formal diagnosis of autism and their ages ranged from 3 years to 9 years. participants’ descriptions are provided in table 1. table 1: participants’ demographics. data collection data were collected during april–june 2020. a semi-structured interview questionnaire (appendix 1) was used to guide the interviews. online semi-structured interviews were conducted with the participants at times convenient for them in their preferred language, either english or isizulu, through telephonic interviews. participants did make use of code-switching between english and isizulu, which the researcher was able to understand, translate and transcribe into english. the semi-structured interviews provided an opportunity for open and in-depth discussions. each interview, lasting approximately 1 h, was audio-recorded and transcribed verbatim. as a result of covid-19 restrictions at the time, all interviews were conducted over the phone following the initial contact. data analysis the collected data underwent inductive thematic analysis. all transcripts were imported into the nvivo computer programme for coding and text content analysis. the framework method was employed to systematically categorise and code the interview transcripts, ensuring a rigorous and high-quality analytical process (ritchie, spencer & o’connor 2003; saldaña 2013). at the outset, codes were formulated based on existing literature regarding teachers’ experiences of feeding children with autism, employing a deductive approach. the framework was then piloted on two interviews separately by the two researchers, and any discrepancies or differences were resolved before applying the framework to all transcripts. in addition, during coding, the framework was supplemented with codes generated from inductive analysis. this comprehensive framework was then used for all interviews. throughout the research process, the researchers engaged in reflexive note-taking to acknowledge and record researcher bias. the second author independently validated the themes and analysed the transcripts, leading to a preliminary intercoder agreement. following this agreement, all themes and labels were thoroughly discussed and mutually agreed upon by both authors. the process of inductive thematic saturation was achieved after analysing all the interviews. to ensure data trustworthiness, the researcher explored five critical components of credibility, transferability, dependability, confirmability and reflexivity (anney 2014). several measures were put in place to ensure rigour and trustworthiness of findings. credibility was determined through member checking. to maximise specific data relative to the context in which it was collected and to establish the likeliness of transferability, the researcher used a purposeful sampling strategy. dependability was achieved by providing detailed descriptions of the data collection and data analysis processes to replicate the study. to ensure confirmability, the researcher diligently documented procedures for cross-verifying and validating data throughout the study. additionally, to maintain reflexivity and avoid any potential bias, the researcher consistently and manually took notes using a research journal during the research process. results teachers in this study utilised a variety of strategies to manage feeding and related difficulties although they were implemented flexibly and when necessary by teachers. all teachers explained that a typical feeding time in the classroom was approximately 20 min – 30 min. in addition, majority of children had breakfast, morning snacks, lunch (before going out to play) and afternoon snacks in the classroom. teachers reported classroom sizes of between 6 and 12 children. parents provided the food for their child in a lunchbox, and the teachers would then give it to them throughout the day, depending on what meal it was. all strategies targeted increased food acceptance and food intake of both familiar and unfamiliar food items (unfamiliar foods were often given to children from their peers’ lunchbox if they showed interest). four strategies emerged as reported by the teachers, including (most to least prevalent): (1) bolus modification, (2) behaviour modelling, (3) positive reinforcement and (4) offering choices and alternatives. it is important to note that teachers implemented these strategies to all children, regardless of their age. all of these are discussed in greater detail in the following sections. bolus modification bolus modification was the predominant strategy used by teachers for children of all ages in this study. all teachers spoke of having to cut food into smaller bite-size pieces, mashing food and feeding the learner smaller bits at a time as reported by teacher 3, ‘i’d cut down the hotdog into smaller pieces and then give him piece by piece and then eventually i’ll … like start giving him bigger pieces’ and teacher 8, ‘remember when i said i had to cut the food small? having to cut the food small or sometimes i need to mash the food’. another teacher spoke about having to modify the food by removing all the beans in the dish so the child would eat their food: ‘there is a child who can eat samp[1] but only prefers white samp without sugar beans, so you have to remove all beans and if you leave even one in the plate or try to hide it and they don’t see it. when you feed him, he will still feel it in his mouth and you will just see him running to the bin to spit out the food.’ (teacher 1, age 31, isizulu) teacher 1 went on to explain that often it was the teacher’s responsibility to make these changes and often had to rely on information from the child’s parents (if available), their teaching assistance and their own knowledge and experience of working with children with autism: ‘some parents would communicate and some will not. and uh … assistants … in the class would say the child would eat 123 and comfortable with certain foods. and uhm … i also knew how autism kids behave from theory because i did a course in autism so i had background information.’ (teacher 1, age 31, isizulu) teacher 3 stated the importance of knowing the children in your class and their feeding preferences, ‘so it is really just a matter of knowing the child and preferences in the class’. however, teachers still found themselves having to improvise and rely on their own understanding of autism, as well as previous experience. although some teachers reported on additional training for autism (as reported by teacher 1 earlier), many teachers did not receive any additional training and were required to learn while in the class, as teacher 4 explained: ‘i just try to improvise where i can to assist them so basically; i didn’t get so much training or input from outside but basically everything happens in the class. most of the teachers, are the learner themselves.’ (teacher 4, age 31, english) after modifying the bolus either by changing the texture, size or even type of food provided, all teachers reported that there was increased food acceptance. teachers also emphasised the need to never force-feed a child as that did not result in any positive feeding outcomes, but to instead try and provide different modifications to the bolus and work on a more graded approach as expressed by teacher 3: ‘so we will slowly present different types of meals but we don’t force them … so we just slowly introduce different types of textures and colors. so they will start by feeling and familiarise themselves with the type and smell before they start eating and then they are willing to try.’ (teacher 3, age 45, sotho) thus, the process of working on bolus modifications proved successful in the classroom, as reported by teachers. they highlighted factors that facilitated increased food acceptance, including different ways in which to modify the food and refraining from force-feeding the children. behaviour modelling six teachers reported using behaviour modelling to address both food-related and behavioural problems. behavioural modelling was performed by having the teachers or teaching assistants model specific ways in which they wanted the learner to eat. again, this strategy was used for all children; however, teachers reported that this was often focused on older children in the study from around 7–9 years of age who were able to appropriately model feeding behaviours. for instance, the teachers described how they would sit down next to the learners and model appropriate mealtime behaviours, such as sitting on a chair, using a placemat and utensils to eat, as well as swallowing their food and not spitting it out. this process was described by teacher 4: ‘so if you put food in front of him, he’ll just take it and throw it at you. i had to teach him not to do that and show him how to sit.’ (teacher 4, age 31, english) teacher 3 also shared how she modelled specific eating techniques and encouraged the children to slow down during mealtime: ‘he didn’t eat neatly, so if he had a hotdog, he’ll try to push that whole hotdog into his face … urgh, into his mouth. so i had to teach show him how to eat slower.’ (teacher 3, age 45, sotho) teachers targeted specific mealtime behaviours that they felt important such as ‘eating neatly’, as reported by the teacher earlier. however, teachers also tried to be cognisant of the child’s different backgrounds when modelling behaviour as teachers were aware that children might have different mealtime rules, routines and rituals at home and with their families. teachers handled this differently, with some trying to incorporate the child’s customs into mealtimes, while others did not. the prominent mealtime custom teachers spoke about was whether or not to let the children eat with their hands. teacher 2 explained how she let a child eat with his hands, knowing this was his mode of eating at home: ‘it’s a challenge even still today but i’m taking it step by step and one by one because with our kids it’s not one fits all. i would let him use his hands because it’s something he does at home and it’s allowed and so it’s okay.’ (teacher 2, age 27, sotho) however, teachers had different approaches to the ways in which they incorporated the child’s eating practices in the home and school environment, and what they were and were not willing to accept in the classroom: ‘if it is in the child’s culture to eat with their hands, i do try respect it but also try and teach them manners … that there is a little bit of a balancing to find … but we do try and respect cultures in general but the aim is certainly to let them eat. so i teach the children to eat with a spoon because … so i hold his hands and take the food from the plate and then to put in his mouth … so i first train him how to hold a spoon and it’s been difficult even until today. others used to eat with spoons just this child only.’ (teacher 1, age 31, isizulu) in the given excerpt, the teacher explains how she is aware that the child may eat with their hands at home, but she still feels that she would like all the children in her class to eat with spoons. the teacher then reports how she spends time modelling and ‘training’ the child to eat with a spoon to establish her own mealtime rules and rituals in the classroom. this is an important consideration for feeding in the classroom and the influence of the teacher on the ways in which feeding behaviour is being modelled. teachers utilising this strategy mentioned that this strategy was time-consuming and often required more time compared with when the child could eat independently, ‘and the time … it takes 15 min to 20 min if they feed themselves but 30 minutes when you are feeding them’ (teacher 1, age 31, isizulu). however, teachers stated that they were willing to put in this additional time as it would ensure the child is able to eat and fit in with the rest of the class regarding specific mealtime rituals and behaviours. positive reinforcement five teachers in this study spoke of using positive reinforcement to enhance eating. positive reinforcement was provided in different ways, such as through encouragement and verbal praise, as explained by teacher 1, ‘and also lots and lots of prompting and encouraging and praises, hey well done … would you like to try again?’ teacher 2 detailed a similar experience motivating a child to eat by using words of encouragement, ‘i encourage the child like “hey try one more bite” and when they do, this is an achievement so you encourage that’. one teacher reported that when she changed her language to the child’s home language, this positively impacted the child’s acceptance and response to new foods (‘wenze kahle’ [well done]) (teacher 8, age 34, isizulu). these verbal reinforcements were used to increase the acceptance of familiar foods the child was currently eating and in the introduction of new and unfamiliar foods. however, teachers reported that when using positive reinforcement to try new and unfamiliar foods, this strategy was less successful. teachers reported that they struggled to encourage children in the class to eat unfamiliar foods. new and unfamiliar foods were often provided by the parents in the lunchbox when they themselves were trying new foods at home or if the child has been put on a new diet (such as gluten-free). this was described by teacher 6: ‘and then if you see him wanting to put it in the bin, i would try and say, “hey, don’t do that, let’s give this a try.” he would actually start crying and screaming because he wants to throw it away now. so now if a child is taken off, if they are on maybe its gluten-free because of the weight, so they put the child on the diet but the child do not eat certain foods anymore so now they see his friend eating it or us as teachers are eating it then they get meltdowns or they don’t feel happy about it. they always like start grabbing things and not responding when you try and get them to eat their food.’ (teacher 6, age 45, afrikaans) teachers reported that positive reinforcement as a strategy did not always work and that it was often learner-dependent. positive reinforcement was used to target food-related and behavioural problems in order to increase acceptance of more portion sizes, introduce new textures or encourage appropriate mealtime behaviour. in this study, positive reinforcement was used to target behaviours such as children refusing their food, throwing it or spitting it out: ‘[i]f they don’t want the food, they’ll spit it out or they’ll throw you with the food or throw it on the floor so that they don’t need to eat it.’ (teacher 5, age 25, english) in order to combat the child’s behaviour and food refusal, teachers would offer an object, preferred food item or activity that is of high value to the learner to encourage reoccurrence of a behaviour. this particular strategy was related to those teachers who were trained on applied behaviour analysis (aba), and teachers using this method expressed confidence in using this strategy and one that they found to be highly successful, ‘aba strategy where you kind of reward them with food. you reward them with a tiny piece of sweet or chip or something and it works’ (teacher 4, age 31, english). another teacher gave an example of how this strategy was used by allowing the child to play on the ipad: ‘so … i am aba trained … so the aba method of positive reinforcement … so small bite at a time … one reinforcement …one or two bites … reinforcement … that kind of thing is a strategy that i’ve been using … since my training which works quite well. ya, so that positive … uhm having something that is of high value, not just a small value. it has to be of high value for the reinforcement to actually encourage them to do that. if the parents do want to introduce new textures … that is always the best method that i’ve used actually to help with that.’ (teacher 5, age 25, english) offering choices and alternatives a novel theme that emerged in this study was spoken by two teachers, regarding offering choices and food alternatives as a strategy. one teacher described how she would place the lunchbox in front of the child and allow them to choose what they would like to eat, regardless of whether it may have been appropriate for that meal or not: ‘so he’ll decide what to eat. it doesn’t matter if he decide noodles for breakfast or weetbix for lunch but as long as he eats but it’s not a problem, so long as the child has something to eat. so what we do is we put the lunchbox and we tell them, okay let’s see what you want to eat, you choose what you want to eat.’ (teacher 3, age 45, sotho) the teacher went on to explain that she found this strategy to be very helpful as it reduced the child’s stress around mealtimes and eating and was also time-efficient, ‘no one is fighting, no one is angry and sometimes it’s because a simple thing that can take five minutes’. the teacher also expressed the value of this strategy to facilitate language and communication for those children who were non-verbal or who had limited expressive language. offering the children choices functioned as an avenue to facilitate their expressive language abilities and communicative intent. another teacher spoke about offering food alternatives to ensure that the child would eat, even using her own money to purchase an alternative food option. teacher 6 described how she had a child in her class who did not want to eat the food in his lunchbox and had a ‘meltdown’ and then refused to eat. the teacher was worried the child would not eat anything and ordered a familiar food item (pizza) from a particular restaurant that she knew the child enjoyed and would eat: ‘i had to take money out of my pocket for pizza because the learner wanted pizza. so … because the learner so clever, she only eats debonairs [pizza outlet]. because debonairs is quite expensive. this is when i had to bell [call] debonairs and to do a delivery … buy those small ones of r25.00 fresh from debonairs.’ (teacher 6, age 45, afrikaans) discussion this qualitative study is one of the first to explore teachers’ implementation of management strategies when feeding children with autism in a south african classroom. although the sample size was small, data saturation was achieved by focusing interview questions on a specific phenomenon. the study revealed that feeding and mealtimes presented challenges for teachers, irrespective of their years of teaching experience. these findings are consistent with studies examining the experiences of caregivers or mothers of children with autism, who also reported difficulties during mealtimes (adams, verachia & coutts 2020; adams et al. 2021; ausderau & juarez 2013; gobrial 2018; rogers, magill-evans & rempel 2012). in previous studies on caregivers, they reported that mealtimes were difficult and often negatively impacted family mealtimes. this study provides some insights into the teachers’ experiences, some of which were similar across teachers and some unique. the study highlighted the different ways in which teachers tried to support each child’s feeding needs and the different strategies that were employed for different children. unfortunately, as there is not a specific intervention that teachers are able to employ, many relied on trying to understand the child and their own knowledge and experience of working with children with autism and associated feeding difficulties. teachers in this study demonstrated varying levels of experience and training in working with children with autism. while some had received additional training on autism, many lacked guidance on supporting feeding in children with autism, and none had access to feeding specialists or slts at their schools. nevertheless, all teachers stressed the significance of understanding each child in their class and their unique needs. this practice aligns with the common approach among teachers to familiarise themselves with the individual requirements of their students (benson, karlof & siperstein 2008; edwards & mutton 2007; sumbane et al. 2023; syriopoulou-delli, cassimos & polychronopoulou 2016). observing and interacting with the children proved essential, particularly for those requiring additional support and accommodations in the classroom. hence, providing these teachers with additional training becomes essential to better support the children and ensure improved feeding outcomes by implementing appropriate strategies and accommodations in the classroom. when targeting feeding, teachers did not rely on one approach but used a combination to address either food-related behaviours or behavioural problems, with some of the strategies overlapping and addressing mealtime behaviours. strategies used by the teachers were similar to those reported by caregivers (adams et al. 2020; ausderau et al. 2019; farag et al. 2022). however, how teachers implemented the different strategies were slightly different as teachers were required to focus on more than one child during mealtimes. furthermore, many of the strategies used were child-specific, dispelling the idea of a one-size-fits-all approach and reinforcing the importance of understanding each child’s individual needs (bellomo et al. 2020). this technique required an investment of time on the part of the teacher to confirm what did or did not work for each child while incorporating aspects that they felt were appropriate for the child, such as changing their language of instruction. an interesting finding was that many teachers did not employ peer-to-peer techniques, which have shown success in previous studies (padmanabhan & shroff 2020) and could potentially aid in managing the time-consuming nature of the feeding strategies used. teachers may be unaware of this or that there may not be appropriate behavioural models in the classroom as many children with autism will also have associated behavioural difficulties. further exploration of peer-to-peer techniques may be warranted to improve feeding outcomes for children with autism. teachers found bolus modification to be the common and most successful strategy employed. this aligns with previous research suggesting bolus modification as an effective way to manage fussy eating in children with autism (curtin et al. 2015). another less common but effective strategy reported by teachers was offering choices, which not only improved the child’s autonomy and food acceptance but also facilitated language and communication, especially for children with limited expressive language skills. further investigation into the success of offering choices in enhancing expressive language abilities and food acceptance in children with autism is warranted, as children were often only provided with a choice for one meal. moreover, this approach may require parents to provide different food options for each meal, which could have financial implications that need careful consideration within the south african context. teachers are often faced with a dilemma when dealing with children who refuse their food. they must decide whether to allow the child to eat nothing or offer an alternative, even if it means providing unhealthy food options, just to ensure that the child consumes something. many teachers prioritise ensuring that the children eat something, leading them to offer unhealthy alternatives inadvertently reinforcing fussy eating behaviours and creating negative associations with food (kutbi 2020). over time, this may result in a lasting aversion to certain foods and an increased risk of developing unhealthy eating habits. therefore, it is crucial to distinguish between providing different food options that are healthier versus unhealthier, such as fast food. in the current study, it became apparent that some teachers might not fully grasp the potential impact of offering unhealthier or more preferred food choices. one teacher’s primary concern was ensuring the child would eat, to the extent of using her own money to purchase the food. however, it is essential to consider food choices and the financial implications of fast food options in south africa. previous research has highlighted the increased costs of fast foods for parents of children with autism, who provide such options just to ensure their child eats (adams et al. 2020). teachers should be made aware of the different ways in which food options and alternatives can be provided in order to foster a more positive relationship with food, while still allowing for autonomy in the feeding process (johnson et al. 2019; ledford et al. 2018). by doing so, a healthier approach to mealtime can be cultivated, reducing the risk of reinforcing unhealthy eating behaviours in children with autism. furthermore, teachers themselves should be knowledgeable about evidence-based practices in managing feeding difficulties for children with autism. while two teachers in the study were trained in aba and employed aba methods to manage feeding, research has indicated that aba may result in physical and psychological trauma for children with autism and promote dependency (sandoval-norton, shkedy & shkedy 2019, 2021). unfortunately, majority of the available treatment and interventions are not consistently aligned with evidence-based practices, and they are often not suitable for the south african context. most of this information originates from high-income countries like the united states and the united kingdom, which may not fully cater to the specific needs and circumstances of south africa (abubakar et al. 2016; ruparelia et al. 2016; soto et al. 2015). therefore, it is essential to examine available treatment options and assess their feasibility and appropriacy in the south african and african context to ensure the development and utilisation of appropriate measures. mealtimes are deeply embedded in both culture and context. this study illustrated how teachers’ own beliefs and values were incorporated into classroom mealtime rituals, even if they were different from the children’s mealtime routines and rituals at home. prior research has highlighted the importance of eating together as a symbol of unity and collective identity (fiese 2021; ochs & shohet 2006; tuomainen 2014). the study revealed that teachers felt it was important for their mealtime beliefs and values to be integrated into the classroom, such as ‘training’ the child to eat with utensils, despite this not being enforced at home. while accommodating every child’s mealtime routine and ritual may not always be feasible, especially in classrooms with diverse backgrounds, such as in south africa, teachers should strive to be flexible and sensitive to each child’s culture, beliefs and values within the classroom. conclusion as autism prevalence rates increase, and more teachers can expect learners with autism in their classroom, it is important that we understand the ways in which feeding can be managed in the classroom. there were some limitations in the study. while the small sample size was imperative for capturing the experiences of teachers, this study was an exploration, and further research on this area is required. while the focus of this study was on the teacher report, in analysing the results, which offered valuable insights, the inclusion of parents, therapists and other school personnel would enhance the insights gained and help to broaden the scope of the findings. future studies may want to provide a more comprehensive and holistic representation of teachers from other countries, backgrounds and contexts. the inclusion of observational data may be of great importance to better understand the teacher’s experiences and see what is happening in the classroom setting. further research is necessary to develop evidence-based strategies that can effectively enhance the feeding management of children with autism in the classroom. these strategies can then be used to formulate specific guidelines and policies catering to the unique feeding needs of these children. this study makes a valuable contribution to the global research and literature on teachers feeding children with autism in a south african classroom. it aims to expand the existing body of literature on children with autism and their associated feeding difficulties, focusing on diverse contexts, including lowand middle-income countries (lmics) and africa. the implications of this study underscore the importance of providing training for teachers working in special needs schools and the development of treatment methods that are culturally appropriate and responsive to the specific context. the findings emphasise the need for collaboration between teachers, caregivers and other healthcare professionals when working with school-aged children, especially those with disabilities. it highlights the significance of considering cultural and contextual variations in the school setting, while managing feeding difficulties. by addressing these aspects, the study contributes to improving the support and care provided to children with autism and feeding challenges in the educational environment. acknowledgements the authors would like to thank all the teachers who participated in this study, shared their experiences and made this research possible. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions s.n.a conceptualised and supervised the project. n.m collected the data. s.n.a drafted the article and both authors discussed the results and contributed to the final manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are available upon request from the corresponding author, s.n.a. disclaimer the views and opinions expressed in this article are solely those of the authors. references abubakar, a., ssewanyana, d. & newton, c.r., 2016, ‘a systematic review of research on autism spectrum disorders in sub-saharan africa’, behavioural neurology 2016, 3501910. 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manage such feeding difficulties, and to what extent are they successful? footnote 1. samp is an african food made of dried corn kernels that have been pounded and chopped until broken. abstract introduction results discussion conclusion acknowledgements references about the author(s) babalwa tshaka centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa surona visagie centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lieketseng y. ned centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation tshaka, b., visagie, s. & ned, l.y., 2023, ‘non-use of healthcare services among persons with mobility impairments in cofimvaba, south africa’, african journal of disability 12(0), a1112. https://doi.org/10.4102/ajod.v12i0.1112 original research non-use of healthcare services among persons with mobility impairments in cofimvaba, south africa babalwa tshaka, surona visagie, lieketseng y. ned received: 12 july 2022; accepted: 29 oct. 2022; published: 27 jan. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: access to primary health care is a fundamental right for all. however, persons with disabilities are experiencing difficulties when accessing healthcare because of various environmental and personal barriers which may lead to nonuse of such services. objectives: this study aimed to identify the challenges leading to non-use of healthcare services among persons with mobility impairments in cofimvaba. method: a descriptive qualitative design using snowball sampling was implemented. semistructured interviews were conducted in isixhosa with five participants who stopped accessing healthcare, using a self-developed interview guide. inductive thematic analysis was used to develop codes and themes from the data. results: study findings revealed major challenges experienced by persons with mobility impairments in accessing healthcare. these included inaccessible roads, geographic inaccessibility, financial accessibility and indirect cost of care, having little or not many health problems, physical infrastructure difficulties within facilities, and attitudinal barriers. conclusion: the findings indicated that persons with disabilities are experiencing a combination of structural and environmental challenges which make them stop accessing healthcare. contribution: the article shares insights on access challenges that influence non-use of the often-needed healthcare services within the context of rural areas. keywords: access; mobility impairments; disability; healthcare; challenges; south africa. introduction approximately 1 billion (15%) of the world’s population has some form of disability. eighty percent of these people live in lowand middle-income countries (lmics) (who 2011). among these countries, a majority of the population live in poverty (who 2011). therefore, lmics carry a combined burden of poverty and disability. the link between poverty and disability is well documented (hanass-hancock & mckenzie 2017; mitra et al. 2017; un 2018; who 2011). on one hand, disability increases the risk of poverty because of inadequate opportunities, poor access and impairment-related costs. on the other hand, poverty also increases the risk of disability through living circumstances, occupational risks and poor access to services such as high-quality education and healthcare, among others (hanass-hancock & mckenzie 2017). south africa, because of its apartheid history, remains a deeply unequal country, with the majority of its population living in poverty. about 55% (30.4 million) of south africans live in poverty. the south african disability statistics based on census 2011 indicate that 7.5% of the population are persons with disabilities (stats sa 2011). because of the country’s inequalities, public healthcare in the country remains inequitable, with inadequate resources for rehabilitation. accessing healthcare is a human right which is recognised by the south african constitution under section 27. south africa’s ratification and signatory status of the convention on the rights of persons with disabilities (crpd) (un 2006), an international human rights framework, has also played a role in advocating for the rights of persons with disabilities to quality healthcare. yet various authors have revealed that access to healthcare remains an unmet need in south africa, and this is worse for poor persons with disabilities in rural areas (grut et al. 2012; moodley & rose 2015; mutwali & rose 2019; vergunst et al. 2015, 2017; visagie & schneider 2014). the recent united nations (un) (2018) report similarly revealed that persons with disabilities are three times more likely to be unable to access healthcare when needed and have poorer health outcomes than their peers without disabilities (un 2018). rehabilitation access as a component of healthcare services remains a challenge too, with more than 50% of persons with disabilities having an unmet need for rehabilitation services (un 2018). visagie and swartz (2016), as well as magaqa, ariana and polack (2021), confirmed these rehabilitation challenges in their recent studies. the difficulties often experienced by persons with disabilities include service accessibility and/or inaccessible physical or built environment; receiving lower-quality services and added extra costs for healthcare services (kuper & heydt 2019); discrimination and social stigma (hashemi et al. 2020; mitchell et al. 2022); and knowledge, information and communication barriers (hashemi et al. 2020; mitchel et al. 2022). different scholars have argued that it is crucial for persons with disabilities to access healthcare as their peers do or even more so, because they can be vulnerable to poor health and might develop secondary complications (kuper & heydt 2019; sherry 2014; united nations 2018). as confirmed by the un (2018:73), sustainable development goal (sdg) 3 shows that persons with disabilities are at a greater risk of developing secondary complications, have poor health and need healthcare more than other people. these services may be for either general healthcare or services specifically related to their impairments (kuper & heydt 2019). the studies described show that persons with disabilities have more healthcare needs than their peers without disabilities. yet they are more vulnerable to inaccessible and low-quality healthcare than others. they also show that many factors play a role in access challenges. geographical, racial and socio-economic differences in health service provision intersect with disability to further shape the disparities experienced by persons with disabilities in south africa. south africa has many persons with mobility impairments because of its high rates of violence and trauma. another driver of the prevalence of mobility impairment in the country is human immunodeficiency virus (hiv) and acquired immunodeficiency syndrome (aids). myezwa et al. (2018) found that 39% of persons receiving antiretroviral therapy (art) experience mobility limitations. rural areas mostly have poor infrastructure with long distances to travel in between service organisations (vergunst et al. 2017; visagie & swart 2016). these factors mostly affect those with mobility impairments in accessing and using healthcare services. many existing studies on healthcare access have, however, looked generally at all persons with disabilities who are still using healthcare (grut et al. 2012; moodley & rose 2015; mutwali & rose 2019; vergunst et al. 2015, 2017; visagie 2015) and did not specifically sample by impairment type and by those who were using public healthcare and stopped accessing public care intentionally. understanding the experiences of those who stopped accessing healthcare, particularly in the most vulnerable rural communities, is thus important. additionally, understanding specific challenges related to impairment type is equally important because of the diverse needs that persons with disabilities face, even those with the same impairment type. this study explored experiences of those who stopped accessing healthcare, more specifically those with mobility impairments in a rural context. mobility impairment refers to a loss of functioning in lower limbs or the loss of lower limbs as a result of a trauma, congenital or acquired conditions (gudwana 2019). mobility impairments can influence access to and use of services. this study explored the experiences of persons with mobility impairments in accessing healthcare and the reasons for nonuse of healthcare in cofimvaba, eastern cape province, south africa. research design a qualitative methodology was followed, using a descriptive approach to explore the experiences of persons with mobility impairments who had stopped accessing healthcare before december 2018. the major purpose of descriptive research is description of the situation as it exists at present (kothari 2004). in a descriptive approach, a researcher obtains information of what happened. in this instance, the reasons for nonuse of healthcare and the challenges experienced were described. setting cofimvaba is a poor, deeply rural area, situated in the chris hani district. it is 80 km away from queenstown, the nearest town, in the eastern cape province. cofimvaba forms part of the intsika yethu municipality, which consists of 21 wards. it has 35 clinics, one community health centre (chc) and one district hospital. some villages are more than 20 km away from the clinics with bad roads, especially gravel roads with potholes and stones, which become muddy when it rains. in these areas, accessing public transport is a challenge. as a result, it is difficult to access services, as the natural environment on its own presents many mobility challenges for those with disabilities. according to the district health information system (dhis), the total population of cofimvaba is 135 933. the first author chose this particular setting and study focus because she has been practising as an occupational therapist and rehabilitation manager in cofimvaba hospital for 13 years and had noticed, over the years, how persons with mobility impairments were disappearing from the system and no longer coming for follow-up check-ups, even for assistive devices. the first author was therefore interested in exploring the reasons for the nonuse of services. study population and sampling strategy the study population were all persons with mobility impairments in cofimvaba who had stopped accessing formal public healthcare before 2018. this research focused on those who did not access healthcare for at least 12 months. snowball sampling was used in this study, which involved building a sample through referrals (o’leary 2017). referrals were received from the community health workers who identified participants from the respective communities they serve. participants were selected from different communal wards. initially, the plan was to conduct the interviews face-to-face; however, because of the coronavirus disease 2019 (covid-19) pandemic, interviews were conducted telephonically. having to conduct telephonic interviews also decreased the number of participants, as only five of nine were contacted on cell phone calls made on three different occasions. the information on the participant’s last date of visit to the facility was received from the community healthcare workers and then confirmed during the telephone interview with the participant. inclusion and exclusion the persons with mobility impairments who had stopped accessing formal, public healthcare before december 2018 were included in the study. participants had to be 18 or older and able to express themselves in isixhosa or english. persons with impairments other than mobility were excluded from the study. the study participants who were able to express themselves in isixhosa and english were included. those with impairments other than mobility impairments or with a combination of mobility and other impairments, and participants with cognitive impairments, were excluded (see table 1). persons with other impairments were excluded because this study focused on mobility impairments. table 1: demographic details of participants. data collection semistructured interviews were conducted to gather descriptive accounts of people’s experiences. semistructured interviews are flexible and allow the discovering of individual responses regarding a particular situation or phenomenon (mcintosh & morse 2015). in semistructured interviews, participants are free to respond to open-ended questions as they wish, and the researcher probes the responses for any further elaboration needed. the interviews were conducted in isixhosa, using a self-developed interview guide. the self-developed interview guide had brief questions to start the conversation and enabled participants to express their experiences on accessing healthcare and reasons for stopping accessing healthcare. the first author used the self-developed interview guide to ensure that the tool provided the necessary information for which it was intended. it was divided into demographic and interview questions. the main questions were as follows: tell me how it is for you to use healthcare. when was the last time you accessed healthcare? what are the reasons for stopping accessing healthcare? what challenges did you experienced while accessing healthcare? what are your feelings on accessing healthcare? what can be done so that you can access healthcare again? anything you would like to add? the tool was translated from english to isixhosa by the first author and cross-checked by the third author. there was no back-translation. this is because the first and third authors are both fluent in isixhosa and did not need to outsource a translator. transcripts were transcribed and translated from isixhosa to english. the tool was tested through a pilot study with one participant to ensure that questions were clear and to enable the researcher to practise doing an interview. there were a few changes that were made after the pilot study, such as improving the way the first author conducted the interview, asked for clarity and conducted probing. the pilot participant’s data was not part of the five participants cited in this study. the interviews lasted between 30 and 45 min. there were problems that were encountered, such as network challenges which interfered with the quality of the interviews. some participants were not reached at the agreed time because of signal issues. during the interviews, signal was at times lost, flat batteries occurred and faulty speakers of the phone made it difficult to hear what the participants were saying. as such, the first author had to request participants to repeat their responses often and also had to repeat questions to participants. at times, interviews were rescheduled for another day. these were all limitations that came with using virtual methods as a result of covid-19 restrictions in rural contexts. all interviews were recorded using an audio recording device, and the first author kept additional notes on interviews using a reflective journal. each participant was assigned a code (alphanumerical, e.g. poo1) and they were not identified by their real names. all data were transcribed verbatim by the first author and then translated into english. electronic data were kept in a password-protected folder on a desktop computer. the audiotapes and hard copies of transcriptions were kept in a locked cabinet in the first author’s office. backup data were also stored in a password-protected cloud folder. all raw data will be destroyed after 5 years, as stipulated by the university rules. data lost during interviews were recovered during follow-up when participants were called for follow-up to give them an opportunity to add or correct where they may have been misrepresented. in these follow-up interviews, the first author read the transcript to the participants, and they were asked to correct any misinterpretations. each participant was remunerated with a r100.00 airtime voucher for his or her network, such as vodacom, mtn and the like, to thank them for the time they spent during the interview. data analysis inductive thematic analysis, a bottom-up approach was used to analyse data (braun & clarke 2006). the researcher followed the six phases to thematic analysis, including familiarising self with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes and producing a final report (braun & clarke 2006, 2012). identified codes were grouped together to develop and define themes. recurring themes were grouped together to eventually form seven main themes, as set out in the results section. ethical considerations permission was obtained from and approved by the health research ethics committee at stellenbosch university (reference number s19/10/263). participation in the study was voluntary. participants gave verbal consent because of covid-19 and later signed written informed consent forms which were translated to isixhosa. participants were informed that the study was independent; thus, no direct benefit would be derived from participation. confidentiality was maintained throughout the entire research study between the researcher and the participants. all study participants were treated equally, thus ensuring fairness. researcher explained to participants that the information would be kept anonymous and pseudonyms would be used in the writing up of the study findings. trustworthiness in this study, trustworthiness was enhanced by ensuring credibility, transferability, dependability and confirmability (lincoln & guba 1985). for credibility, the first author followed up with all participants to check that the transcripts accurately reflected what they shared. this was carried out after transcription. the second author also cross-checked the translated data against the isixhosa data to ensure that meaning was not lost through translation. raw data were presented in quotes. it cannot be assumed that the research findings will be transferable from one context to another. however, the authors provided rich contextual descriptions of the study and the methodological steps followed to enable transferability. a description of how codes were developed, how themes were identified and how conclusions and findings were reached was documented to address confirmability. records of raw data, field notes and transcripts were also kept. a reflective journal was also used to document the first author’s emotions and experiences. to ensure dependability, the authors guarded against vagueness by making clear all the processes engaged in carrying out the study so that other researchers will be able to replicate the processes and achieve similar results. results six themes emerged from participants’ experiences in accessing healthcare. these included inaccessible roads, geographic inaccessibility, financial inaccessibility or indirect cost of care, little or not many health problems, physical infrastructure difficulties within facilities and attitudinal barriers. theme one: inaccessible roads inaccessible roads were a cause of nonuse of health facilities for study participants. inaccessible roads included unmaintained gravel roads and unpaved roads, sometimes with hilly terrain, mud and stones. these all made it difficult to use a wheelchair: ‘the road is gravel with stones, has holes and when it is raining, the road is muddy. i had difficulties to push wheelchair. my child used to assist me by pushing me in the bad road especially in the holes. i felt bad because the road has stones. my child, sometime he was at school and i had stress because the road is small, i was afraid what if a car might come i would in a problem.’ (p004, female, 53 years old) participants described that roads are not well-maintained: ‘the road is a gravel, its bad and not maintained. it is having potholes, holes, and the taxi driver will leave you next to those potholes. i struggled to push a wheelchair through those potholes. taxi drivers do not have patience, they left me where ever they wanted to leave because they rushed to town. i ended up struggling to cross the road and the person that helped to push me also struggled because the road has stones and when it’s raining, there is mud that makes it difficult to push a wheelchair.’ (p005, male, 34 years old) ‘the road is muddy when it rains and cars don’t enter the village when it’s raining. there are rocks.’ (p003, male, 77 years old) ‘when it rains, i would get my arms and clothes dirty because i had to help the person who was pushing me. sometimes i needed to be fetched because my wheelchair was not moving in mud. after i pushed myself in the mud i didn’t feel well, i had to sleep and rest, my body ached.’ (p002, male, 56 years old) theme two: geographic accessibility a spatial factor felt by participants in these villages was the long distance between their villages and the nearest health facility. this was identified as a major challenge that led participants to stop using the health facility: ‘clinic is far from the community more especially for persons with disabilities who are wheelchair bound. most of transport/taxis from town are full, normally pass through while i was waiting at the bus stop and it is a problem because i ended up feeling sorry for myself. when you are a wheelchair bound person people get annoyed, irritated because i needed to be assisted in order to get inside the taxi.’ (p001, male, 33 years old) ‘if i was educated i will be able to measure the distance but all i can say it is too far from the community to the clinic as a result i cannot go by myself that’s why i had to hire a car but able bodied can walk.’ (p003, male, 77 years old) ‘it is far, from the home to the bus stop is also far, then i had to take a taxi to the clinic. other people had to get to the taxi and the taxi went to the clinic. when i arrived at the clinic it’s around nine in the morning and i had to wait to be served by the nurse.’ (p002, male, 56 years old) these distances need one to have transport. however, these participants experienced transport challenges as well, which exacerbated their access issues, and thus they resorted to no longer using the health facility. their most common means of going to the clinic was through public taxis, but these are similarly difficult to access: ‘i had transport challenges most of the time especially when i had to go back home. to go to the clinic i did not have a challenge, most drivers understood me and accommodated me but the challenge was when i was supposed to go back home because taxis from our community during the day were in town. i sat next to the road and i ended up pushing my wheelchair and rested along the road. i felt bad end up asking yourself why god made men to be disabled using a wheelchair. i felt like a burden in most of people. sometimes i don’t blame the drivers because the car manufacturers do not accommodate persons with disabilities when they design cars because there is no space for a wheelchair in the taxi. i ended up having difficulties in accessing healthcare.’ (p001, male, 33 years old) ‘since i’m using a wheelchair i experienced problems with transport. i used to call a driver to spare a front seat and sometimes i did not have airtime. when i arrived at the taxi, the front seat was occupied and i used to request the persons in front so that i can sit in front and some of them refused and had to stop going to the clinic because i could not sit at the back of the van.’ (p005, male, 34 years old) theme three: financial accessibility and indirect cost of care public healthcare services are free for persons with disabilities. however, participants reported that they incurred costs to pay taxis in order to access the health facility. these costs sometimes escalate for persons with disabilities because they have to hire a taxi from home to the health facility: ‘when i went to the clinic i paid r150 and to town i paid r700 but when i went to the doctor i called a car that fetched me at my house and charged me r1000.’ (p003, male, 77 years old) ‘it depends when i hired a car i didn’t pay less than r500 from mcambalala to cofimvaba hospital.’ (p005, male, 34 years old) ‘a driver normally charged me r200 because i took him from his home but some drivers felt sorry for me and charged r30.’ (p004, female, 53 years old) some participants are dependent on a disability grant, and having to pay for a wheelchair in a taxi takes a good deal from the grant, among other competing needs for survival: ‘it is too much money, in other taxis i had to pay for myself a seat and a wheelchair and that made me feel bad because i’m only dependent on disability grant which is not sufficient to cater for my family needs.’ (p001, male, 33 years old) responding to referrals from the clinic to the hospital for further treatment similarly adds a cost to the participants as they had to find their own way to the hospital and these are far apart: ‘to go to ncora clinic its r600, may be at ncora they refer me to cofimvaba hospital which is r900 … since i’m getting a disability grant, i had challenges with buying grocery and my medication when i had to cover transport fees. some medication is not available at the clinic especially those they gave me energy [vitamins]. i bought them from the chemist.’ (p002, male, 56 years old) theme four: little or not many health problems some participants in this study stated that not having any illnesses for a while stopped them from accessing the health facility for treatment: ‘no it’s been a long time not using a health clinic. there are no reasons but i hardly get sick and have nothing that needs me to come to the clinic. i don’t have another reason. i will visit the health clinic when i have illness.’ (p001, male, 33 years old) ‘if nothing is bothering you i don’t see the need for you to go to the clinic. nothing forced me to go to the clinic. i rarely get sick, nothing would encourage me to go to the clinic. without illness i don’t see if i can look for opportunities to go to the clinic. i’m still young to go to the clinic, i will attend the clinic when i’m old at 60 years. i will visit clinic when i’m sick.’ (p005, male, 34 years old) another 53-year-old woman in upper mncuncuzo described herself as a nonuser of health services because she had not had any health problems over the past 4 years: ‘i don’t have anything that needs me to go to healthcare. it’s been 4 years not attending healthcare. i attended healthcare a long time ago because i had pains when i was starting to use a wheelchair. i hardly get sick now but i will visit when i am sick.’ (p004, female, 53 years old) theme five: physical infrastructure difficulties within facilities some health facilities are not accessible to persons with mobility impairments because of inaccessible infrastructure. participants described the toilets as inaccessible as they are not designed for persons with mobility impairments: ‘i normally don’t go to the toilet because i got helped but one day i wanted to relieve myself and i could not get inside because the toilet is outside, not designed for persons with disabilities, no handrails; it was difficult for me to use the toilet.’ (p002, male, 56 years old) one participant had to crawl to get inside the toilet, which is a publicly dehumanising experience to persons with disabilities. ‘toilets at clinic are not catered for persons with mobility impairment. they are outside, the door is too small, a wheelchair cannot get inside and you have to crawl to get inside the toilet. i was helped with no problems except the toilet problem.’ (p001, male, 33 years old) only one participant did not have challenges with inaccessible toilets: ‘the last time i visited hospital i used toilets and they were big enough for a wheelchair to get inside, with rails, clean and designed for persons with disabilities.’ (p005, male, 34 years old) theme six: attitudinal barriers prevalent negative attitudes of health professionals and attitudes of public taxi drivers were reported as one of the reasons that made using services difficult and thus made them stop accessing healthcare: ‘there is an attitude at the taxis towards wheelchairs that cannot get to the boot. the other thing they had to pick me from the wheelchair to the taxi they feel that it’s too much, wasting their time. that 10 minutes that they had to pick me to the taxi, rushing to another place so end up leaving me. i feel bad end up asking myself why god made me to be disabled using a wheelchair. i felt like a burden in most of people. sometimes i don’t blame the drivers because the car manufacturers do not accommodate persons with disabilities when they design care because there is no space for a wheelchair in the taxi. i ended up having difficulties in accessing healthcare.’ (p001, male, 33 years old) ‘some of the drivers passed through and said it’s full whereas it’s not full because i’m a burden that needs to be assisted to get inside the car and that makes me feel bad.’ (p004, female, 53 years old) ‘using healthcare is well but there are challenges especially in some clinics here in the eastern cape. there seems to be some misunderstandings from the nurses for example when a disabled person gets to the clinic, pregnant, you find that nurses will question each other about how and why she is pregnant when she is disabled and who would impregnate a disabled person. there are also government condoms which are freely available. sometimes when a person with a disability requests such condoms from the public health facility, there tends to be some hesitancy from nurses, wondering what you are asking the condoms for. then they will say you like things.’ (p001, male, 33 years old) discussion this study reveals geographic inaccessibility as introducing many challenging experiences to persons with mobility impairments, including hindering access to essential services such as healthcare. the issue of long distance is prominently featured as a reason for nonuse of healthcare facilities, as well as poor access in other healthcare access studies for persons with disabilities. for example, long distances as a barrier to access are seemingly common in other rural contexts, including other parts of the eastern cape in south africa (vergunst 2016), in rural namibia (van rooy et al. 2012), rural areas in south asia (gudlavalleti 2018), in botswana (paulus-mokgachane, visagie & mji 2019), in ghana (appiah et al. 2020), in malawi (munthali et al. 2019) and other rural areas in lmics (dassah et al. 2018). in all these studies, long distance to a healthcare facility is reported as a major barrier to accessing healthcare for persons with disabilities. interestingly, some urban areas have also revealed the same. for example, scheffler, visagie and schneider (2015) identified that most users with disabilities in urban cape town access health facilities by foot as they are within a 3 km radius. de klerk et al. (2019) in cape town also recently identified that travelling distance is attributed to not attending physiotherapy and occupational therapy appointments. however, what worsens access challenges in more rural contexts is the finding that even for those in close proximity, more problems arise including poor terrain, gravel and muddy, poorly maintained roads with rocks which make it difficult to access healthcare when one has mobility impairments. this is often worse after heavy rains, as navigation becomes difficult and challenging for wheelchair users to propel themselves, as the participants in this study revealed. the rural landscape is replete with examples of spaces that explicitly segregate persons with disabilities into differing spatial spheres, that is, inaccessible toilets, roads with no wheelchair-friendly ramps, places and services linked by inaccessible public transport and so on. this is because many of these have not been designed and built with persons with disabilities in mind. one may argue that the generally communicated message is that they are ‘out of place’. another theme that needs to be addressed is the process of travelling to the clinics. the experiences necessitate good access to transport, whether private or public. a majority of the south african population rely on public transportation, and this is limited in many rural settings. this study shows participants who experienced transport challenges ranging from unavailability to unaffordable and/or inaccessible transport. compounding this was the challenge of being sometimes met with negative attitudes from taxi drivers or even long waiting hours because of some taxis not wanting to take a person with a disability. all these contributed to their nonuse of healthcare services. similarly, magnusson, finye and enstedt (2020) in malawi recently reported unavailability of transport as the reason for prosthetic and orthotic users not attending healthcare, and vergunst et al. (2016) also found the lack of transport to healthcare facilities as a hindrance to health access in another rural area in the eastern cape, south africa. while others could manage hiring private taxis at times, this was, however, not a sustainable solution, as it became too expensive. it always became too costly to pay the extra fare to cover the wheelchair space or that of the personal assistance (tshaka 2021). previous studies have well documented the additional costs that persons with mobility impairments incur when accessing healthcare (eide et al. 2015; hashemi et al. 2020). this is to say, transportation is one of the factors that introduces added costs and is a barrier to accessing health services. when persons with mobility impairments finally arrive at these facilities, they are also presented with other challenges, such as inaccessible toilets in their respective clinics and facing negative attitudes from health professionals. negative attitudes from health professionals are a longstanding concerning issue to persons with disabilities (eide et al. 2015; munthali et al. 2019; ntamo, buso & longo-mbenza 2013; van rooy et al. 2012). this is similar for toilets which are not designed for inclusiveness – a violation of the human rights of persons with disabilities which makes visits to health centres not a pleasant experience. for example, hashemi et al. (2020) reported that persons with disabilities often avoid drinking liquids when accessing healthcare centres because toilets are inaccessible. health and planning are historically linked. a notable feature in south africa is that the geographic accessibility challenges experienced by persons with disabilities remain a symptom of the colonial and apartheid administration which created not only interprovincial differences in access but also rural and urban differences and inequities in accessing services – differences which led to the underdevelopment of rural areas and services. this study shows that there is an umbilical link between environmental conditions in rural contexts, healthcare access challenges and the nonuse status. it is important to recognise more fully the impact these environmental factors have on human emotional and stress responses which lead them to stop using services that they need. this may have poor impact on the health outcomes of persons with disabilities, if not addressed. conclusion having clinics and hospitals in the community is of little use if one cannot travel to them because of long distances, poor infrastructure and inaccessible transport. it is clear that issues of accessibility are much more complex than having services located closer. persons with mobility impairments as a group have reduced mobility and live in relative poverty, which restricts their ability to own and run a car. as a consequence, they are reliant on public transport and taxis to travel, with assistance from friends and family. however, these resources are not always available at convenient times. this is exacerbated in rural settings where public transport is largely inaccessible and where people struggle with financial accessibility too. additionally, family and friends are also sometimes at work or school and thus unable to provide the needed support of accompanying a relative to the clinic. a solution, for example, might be for local authorities to provide transport on demand until the public transport system becomes more inclusive. alternatively, investing in community-based workers who are trained on working with persons with disabilities could be a form of support. additionally, efforts need to be directed towards fixing rural roads infrastructure so that persons with mobility impairments can navigate them with ease. lastly, the local department of health must come up with strategies on eliminating negative attitudes of health professionals towards persons with disabilities, as this impedes access to services. limitations cofimvaba is a vast, deeply rural area with hard-to-reach areas because of the poor condition of roads. as a result of the covid-19 pandemic, verbal consent was gained as participants did not have e-mail addresses and the postal service would have imposed further delays. later, however, written consent forms were sent to participants via community health workers for signature and filling. because of poor connectivity and limited access to electricity in rural areas, network connectivity challenges in some areas imposed difficulties to reach some participants telephonically. some participants experienced challenges with their telephones, for example, battery life time, faulty speaker, poor connection or last-minute challenges such as family and health problems. the small sample is also a limitation to this study, as these findings cannot be generalised. it should, however, be noted that the aim of qualitative research is not to be generalisable but to provide rich data, which was achieved in this study. acknowledgements the authors wish to thank the participants who took part in this study as well as their families. they also thank the staff at the centre of rehabilitation at stellenbosch university. this article is partially based on the author’s thesis of the degree of master of medical science, ‘exploring experiences of persons with mobility impairments in accessing healthcare in cofimvaba, south africa’, at stellenbosch university, south africa, with supervisors dr l. ned and dr s. visagie, received december 2021, available here: http://hdl.handle.net/10019.1/123685’. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions b.t. conducted data collection, performed data analysis and drafted the article. l.y.n. and s.v. made conceptual contributions to the article. ethical considerations the study was granted approval from the health research ethics committee at stellenbosch university (ref. no. s19/10/263), and permission was also obtained from the chiefs for community entry. participants were called with the permission from the chiefs. participation in the study was voluntary, and no data were collected before verbal informed consent was obtained. confidentiality was maintained at all times. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references appiah, j.o., agyemang-duah, w., peprah, c., adei, d., peprah, p. & fordjour, a., 2020, ‘transportation barriers to formal healthcare utilisation and associated factors among poor older people under a social protection programme in ghana’, journal of transport & health 19, 1–8. https://doi.org/10.1186/s12889-019-7437-2 braun, v. & clarke, v., 2006, ‘using thematic analysis in psychology’, qualitative research in psychology 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa braun, v. & clarke, v., 2012, ‘thematic analysis’, in h. cooper, p.m. camic, d.l. long, a.t. panter, d. rindskopf 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mannan, h., 2015, ‘you must carry your wheelchair’ – barriers to accessing healthcare in a south african rural area’, global health action 8(1), 1–8. https://doi.org/10.3402/gha.v8.29003 visagie, s., 2015, ‘disability and health care access in an isolated quarter of the karoo’, doctoral dissertation, stellenbosch university, stellenbosch. visagie, s. & swartz, l., 2016, ‘rural south africans’ rehabilitation experiences: case studies from the northern cape province’, south african journal of physiotherapy 72(1), a298. https://doi.org/10.4102/sajp.v72i1.298 visagie, s. & schneider, m., 2014, ‘implementation of the principles of primary health care in a rural area of south africa’, african journal of primary health care & family medicine 6(1), 1–10. https://doi.org/10.4102/phcfm.v6i1.562 who, 2011, world health organisation report on disability 2011, viewed 18 june 2019, from https://www.who.int/disabilities/world_report/2011/chapter4.pdf. article information authors: margie schneider1,2 arne henning eide3 mutamad amin 4 malcom maclachlan5 hasheem mannan6 affiliations: 1psychology department, stellenbosch university, south africa 2centre for social development in africa, university of johannesburg, south africa 3sintef technology and society, norway 4ahfad university for women, omdurman, sudan 5centre for rehabilitation studies, stellenbosch university, south africa 6centre for global health and school of psychology, dublin, ireland correspondence to: margie schneider postal address: flat 13 derby court, 1 gordon rd, kenilworth 7708, south africa dates: received: 07 july 2012 accepted: 07 oct. 2012 published: 22 jan. 2013 how to cite this article: schneider, m., eide, a.h., amin, m., maclachlan, m. & mannan, h., 2013, ‘inclusion of vulnerable groups in health policies: regional policies on health priorities in africa’, african journal of disability 2(1), art. #40, 9 pages. http://dx.doi.org/10.4102/ ajod.v2i1.40 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. inclusion of vulnerable groups in health policies: regional policies on health priorities in africa in this original research... open access • abstract • introduction    • equitable access to health care and equiframe    • aim and objectives • methodology    • criteria for selection of regional policies    • analytical process • ethical considerations • results and discussion    • the vulnerable groups    • core concepts       • rating of mentioned core concepts       • analysis of access references • conclusions and recommendations • acknowledgments    • competing interests    • authors’ contributions • references • appendix 1 • appendix 2 • footnotes abstract top ↑ background: if access to equitable health care is to be achieved for all, policy documents must mention and address in some detail different needs of groups vulnerable to not accessing such health care. if these needs are not addressed in the policy documents, there is little chance that they will be addressed at the stage of implementation. objectives: this paper reports on an analysis of 11 african union (au) policy documents to ascertain the frequency and the extent of mention of 13 core concepts in relation to 12 vulnerable groups, with a specific focus on people with disabilities. method: the paper applied the equiframe analytical framework to the 11 au policy documents. the 11 documents were analysed in terms of how many times a core concept was mentioned and the extent of information on how the core concept should be addressed at the implementation level. each core concept mention was further analysed in terms of the vulnerable group in referred to. results: the analysis of regional au policies highlighted the broad nature of the reference made to vulnerable groups, with a lack of detailed specifications of different needs of different groups. this is confirmed in the highest vulnerable group mention being for ‘universal’. the reading of the documents suggests that vulnerable groups are homogeneous in their needs, which is not the case. there is a lack of recognition of different needs of different vulnerable groups in accessing health care. conclusion: the need for more information and knowledge on the needs of all vulnerable groups is evident. the current lack of mention and of any detail on how to address needs of vulnerable groups will significantly impair the access to equitable health care for all. introduction top ↑ if health policies are to be instruments for realising equity in health, they must specifically document and address the needs of groups vulnerable, or at least potentially vulnerable, in their access to equitable health care services. this paper analyses a series of regional african policy documents to understand the extent to which these documents mention and detail these vulnerability needs, and address the barriers to access to health care. acknowledging barriers to people accessing health care has important implications for providing equitable access to health care and ensuring the best possible outcomes in relation to wellbeing and social justice. disability is one such barrier.1 disability is a common human experience and, in interaction with crucial environmental barriers, can and does limit equitable access to health care. not accessing health care further exacerbates existing health problems, and puts people with activity limitations at risk for developing new health problems that could easily have been prevented. for example, if a person in a wheelchair is unable to access the health service they will not visit the facility when having bronchitis, leading to further complications if not treated or resolved. disability is not the only reason why people are limited in their access to equitable health care, but is the focus of this paper. other groups that are often limited in their access to equitable health care include people living in poverty, women-headed households, orphans and other children with special needs, ethnic minorities, youth, displaced people and people with chronic illnesses (dixon woods et al. 2005; goudge et al. 2009; makwiza et al. 2009; panter-brick 2002; perry et al. 2007; reichard, sacco & turnbull 2004; ridde 2008). a number of health care priorities have been identified for the african continent by the african union (au), including tuberculosis, malaria, hiv and/or aids, other infectious diseases, and sexual and reproductive health. accordingly, the au has developed a number of policies, strategies and plans of action to guide au member states in managing these health priorities at a national level. in addition to these health-focused documents, there are series of policy documents for sectors of the population seen as being vulnerable and at risk for not accessing the necessary health care services. these include documents related to women, youth, elderly people, children and people with disabilities, as shown in the list of documents reviewed and provided below. this reflects recognition of the potential vulnerability of certain groups within populations. equitable access to health care is more likely when issues from both health-focused and vulnerability-focused policy documents are integrated into single policy documents with integrated implementation plans. this ensures that issues of vulnerability are mainstreamed and included in all policies rather than being treated as a special case and as a separate and often ‘afterthought’ issue. we argue that mainstreaming at the level of policy documents is a step in the direction of ensuring equitable access to health care truly for all. buse et al. (2007:1) describe how ‘[p]olicy analysis can contribute to meeting health objectives and untangling the complex forces of power and process that underpin change’. thus, to meet the health objectives of equitable access to health care by vulnerable groups, we need to understand the extent to which their needs are integrated into health related policies, as a step towards understanding the ‘complex forces’ that influence this integration and lead (or not) to equitable access to health care. if vulnerable groups and their specific needs are not visible or are seen as a separate issue not for inclusion in a ‘mainstream’ policy, their needs are not likely to be addressed and integrated into such ‘mainstream’ policies, and even less at the implementation and budget allocation stages. thus, it is of interest to determine the extent to which such groups are included in policy documents in order to advocate for such inclusion if required. the equitable project2 has as one of its aims to determine the impact of a range of vulnerability factors in equitable access to health care with a specific focus on the impact of disability. the first stage of the equitable project comprised an analysis of policy documents to determine whether the identified vulnerability factors are integrated into existing policies on health care provision. the national policies of four african countries (sudan, namibia, malawi and south africa), regional policies developed by the au for its member states, and a range of international policies were analysed. the policies considered are those related to health care service provision and managing specific health care priorities in the african region. this paper reports on the analysis of the regional policies developed by the au for its member states. the analysis of individual country policies are presented in a separate paper (mannan et al. 2012). equitable access to health care and equiframe the united nations committee on economic, social and cultural rights (2000:1) describes health as ‘a fundamental human right indispensable for the exercise of other human rights’ and sets out the four intersecting elements ensuring equitable access to health care services: accessibility, availability, acceptability and quality. this is the definition of equitable health care access adopted by the equitable project and used in the development of the policy analysis framework called equiframe (mannan et al. 2011; maclachlan et al. 2011). table 1: equiframe: key questions and key language of core concepts. equiframe (mannan et al. 2011) is a policy analysis framework that uses a set of core concepts that, if mentioned in a policy, ‘informs the analyst concerning what the policy is [and] what it is intended to accomplish’ (stowe & turnbull 2001:206). the core concepts were extracted from work done specifically on disability policy analysis within a human rights framework (reichard et al. 2004; stowe & turnbull 2001; turnbull, beegle & stowe 2001; turnbull & stowe 2001). this yielded 18 core concepts, to which were added three identified by the united nations committee on economic, social and cultural rights (2000) as being important components of determinants of equitable access to health care. these additional three core concepts were accountability, quality and access, including equitable access to health care as a basic human right (gilson et al. 2008; russel & gilson 2006). while all 21 core concepts were considered in the analysis (table 1), this paper focuses on 13 core concepts (marked with an asterisk*) that were identified in the regional policies beyond an occasional mention in one or two policy documents.3 vulnerable groups are ‘social groups who experience limited resources and consequent high relative risk for morbidity and premature mortality’ (flaskerud & winslow 1998:69). the focus of the equiframe (mannan et al. 2011) is vulnerability, specifically in relation to accessing health care. vulnerable groups included in the equitable analysis were women, children, elderly people, ethnic minorities, displaced people, people suffering from some illnesses and people with disabilities. other groups, such as sexual minorities, can also be considered vulnerable but were not included in the analysis. the focus of the analysis was on developing and using a policy analysis tool rather than being fully exhaustive of all vulnerable groups. vulnerability is a complex process whereby individual characteristics of a person or group of people put that person at risk of not accessing, for example, health care. the risk factor in itself does not cause limited access, but rather the interaction of the factor with a range of other factors external to the person results in an outcome of lack of access. thus, having an impairment does not in itself determine access to health care, but the interaction of having an impairment, such as loss of lower limb mobility, long distances to the health facility, poor or expensive transport, and inaccessible buildings all contribute to an outcome of inequitable access to health care for that person. the role of policies is to ensure that these external factors are set out and elucidated in order to ensure effective implementation. this needs to be done for the different needs of different vulnerable groups. mannan et al. (2011) identified the 12 key vulnerable groups from a review of the literature. an additional category ‘universal’, was included to capture information clearly referring to vulnerable groups but not sufficiently specific in its mention to allocate to one of the other 12 groups (table 2). two of the groups were omitted from this regional analysis – ‘increased relative risk for morbidity’ and ‘mother and child mortality’ – as these are more complex and require access to health care to be given a diagnosis of a health condition for the first, or a range of factors outside of a narrow scope of health care for the second. table 2: list and definition of vulnerable groups. aim and objectives the aim of this paper is to review the extent to which policies4 addressing regional health priorities document the needs of vulnerable groups, as reflected in the core concepts. the underlying assumption is that their inclusion within policies will increase the likelihood of effective and integrated management on the ground. this assumption is not tested in this paper but is addressed in later papers from the equitable project that look at the realised access to health care services in four african countries. the focus is on a review of the actual policy documents only and not of the policy development process or its implementation.the objectives of the paper are to: 1. identify relevant health policies for the region of africa developed by the african union. 2. review these policy documents in relation to the frequency and extent of mention of the identified vulnerable groups and core concepts. methodology top ↑ the research design is exploratory in nature and consists of reviews and analysis of key health-focused policies using the equiframe matrix of 13 of the 21 core concepts and 13 vulnerable groups, including the ‘universal’ category. the equiframe matrix provides a detailed analysis of which core concept is mentioned for which vulnerable groups and the nature of the mention, as set out in appendix 1, as an example. the nature of the mention was rated according to a scale, as set out below. the higher the rating the more comprehensive and detailed the nature of the mention. ratings of 3 and 4 would be required in order to address the different needs of different vulnerable groups: 0 = concept not mentioned at all 1 = concept only mentioned but not developed (incidental) 2 = concept mentioned and explained (notable) 3 = specific policy actions identified to address concept (central) 4 = intention to monitor concept expressed (fundamental) n/a = not relevant regional policies refer to policies developed within africa and by the main african regional body, the au. the au is a body that brings together african countries and develops policies on issues related to specific african continent needs and problems. the documents analysed for this report are recommendations from the au assembly to member countries, with the aim of providing guidelines for member states to develop their own national level policies. the documents reviewed include charters, protocols, declarations, policy frameworks, strategies and a plan of action. these documents deal with continent-wide issues of importance in relation to health, such as hiv and/or aids, malaria, tb, and sexual and reproductive health services. these documents are usually prepared by experts who present them to the council of ministers from member states (in this case ministers of health) to review and adopt accordingly. for the purpose of this report, the documents reviewed will be referred to as policy documents. criteria for selection of regional policies there were a number of criteria applied to the selection of the policy documents. the exploratory nature of the research allowed us to select key policies to use in the exploration rather than being exhaustive. in addition the scope of the policy had to be health or health care services, be a current document (even if dated from 10 to 15 years ago), and be regionally focused in their scope. the documents were obtained from a review of the health and health related sections of the au website. the following 11 documents were selected and analysed. all are available from the au website (au n.d.): 1. african charter on human and people’s rights – banjul, organisation for african unity (oau) document, 1981. 2. african charter on the rights and welfare of the child – 1990, entered into force 1999 – oau. 3. protocol to the african charter on human and people’s rights on the rights of women in africa. – 1995 adopted in 2003. 4. africa summit on roll back malaria – 25 april 2000, abuja – oau document. 5. abuja declaration on hiv and/or aids, tb and other related infections diseases – oau, april 2001. 6. pan-african forum for children – oau document – may 2001. 7. maputo declaration on hiv/aids, tuberculosis, malaria and other related infectious diseases – july 2003 – au document. 8. draft continental policy framework for the promotion of sexual and reproductive health and rights in africa. – au, october 2005. 9. plan of action on sexual and reproductive health and rights (maputo plan of action) 2007–2010 – au document, september 2006. 10. au youth charter – au, july 2006. 11. africa health strategy: 2007–2015 – au document, april 2007. analytical process the policies were analysed by two researchers independently, followed by a comparison of the ratings used. differences were discussed and a consensus reached on what rating to use. the core concepts were rated under the vulnerable group referred to in the policy. if no mention was made of any particular vulnerable group, but the reference to these groups was clear (e.g. ‘all vulnerable groups’), the rating was placed under ‘universal’. thus each policy has a resulting completed matrix. (see appendix 3 for an example of such an analysis). the mentioning of a core concept was rated from 1 to 4 depending on the nature of the mention as set out above. the analysis consisted of scanning the written text for mentions of core concepts and vulnerable groups. terms that were contained in the definition of the concepts of groups were noted as mentions, and, in addition, different terms but that had the same meaning. the focus was on the meaning of the core concept or vulnerable groups rather than strict use of the actual term. for example, ‘limited resources’ and ‘poor’ were noted as being about the same vulnerable group. once the policy was analysed and the ratings set out on the matrix, the 11 policies were summarised with respect to the number of core concepts mentioned and for which vulnerable group these were mentioned, as set out in appendix 2. if a policy was a general one, those sections that made reference to health and health care and the preamble and guiding principles were identified within the policy and analysed in detail. for example, if a document dealt with issues ranging from health, education and employment, then only the preamble and the specific health clauses were considered for analysis. the language used in the policy was the basis for the analysis. if there was more than one occurrence of a core concept for a particular vulnerable group, all instances were recorded under the ‘number column of the matrix’ but only the highest rating was included under the relevant vulnerable group. the analysis presented below focuses on the number of times a core concept was mentioned, followed by a separate description of the rating. ethical considerations top ↑ as this was a document review no ethical clearance was required. results and discussion top ↑ the analysis confirmed that the regional documents provide, in general, broad guidelines for individual countries to develop their own national level policies and guidelines. very few implementation plans or monitoring and evaluation suggestions were made. while guidelines for these latter components should be provided in regional policies, the detail would be the domain of the individual country policies. the vulnerable groups the 11 documents together mention all 13 vulnerable groups (vgs) (table 3). however, the most commonly mentioned vgs across all policies are ‘universal’ (in 10 policies) and ‘youth’ (7 policies). the other vgs were only mentioned 1−3 times across the 11 policies. the least mentioned vgs (only mentioned in 1 policy) were ‘limited resources’, ‘women-headed households’ and ‘displaced populations’. table 3: number of mentions for each vulnerable group in 11 regional policies. the high rate of mention for youth refers to youth generally and does not include youth with disabilities, who were counted under ‘with disabilities’. this number is explained in part by the inclusion of the au youth charter. when looking at youth specifically, the analysis shows that 25 mentions of this vulnerable group were spread across 6 policies, excluding the youth charter, and 14 mentions in the youth charter in relation to health care. this suggests that issues of youth access to health care are reasonably well addressed in most policies and that the youth charter does address health care access as one of its concerns. the youth charter includes three mentions of youth with disabilities (counted under ‘with disabilities’), and one of ‘living far from services’. this finding is congruent with the fact that policies that address specific groups, such as youth, will address needs of that group and will not address needs of some of the other vulnerable groups. the large number of ‘universal’ mentions (relative to the other 12 specific vulnerable groups) highlights the nature of the policy content, which remains broad and lacking in specificity in relation to those sectors of the population who may struggle to access health care. for example, a policy would mention ‘all vulnerable groups’ but not specify which these would include. whilst it is acknowledged that this is a step in the right direction, there remains a gap as to how the needs of such groups are to be met within the scope of a policy. it sounds more like a token mention of vulnerable groups than a serious consideration of the aspects to be addressed in order to meet their needs. furthermore, the lack of specificity obscures the different needs of different groups. core concepts the frequency of occurrence of each of the 13 core concepts in the 11 documents is presented below (table 4). the numbers in the first column are those allocated to the core concepts as set out in table 1 above. the last column gives the number of times each core concept was mentioned in total across all the policies. across the 11 policies, ‘capacity building’ was the most frequently mentioned core concept (42) followed by ‘coordination of services’. apart from ‘autonomy’ and ‘privacy’, which were never mentioned, ‘cultural responsiveness’ was mentioned least. these results reflect the scope of the policies as pushing for capacity building of health care providers and ensuring that services are provided in a coordinated manner. ‘access’ is mentioned 28 times across 6 policies. however, as shown in the more detailed analysis on ‘access’ below, the majority of these mentions are about a broad notion of ‘equitable access to health care’ in some form or another. making services physically accessible and providing information in an accessible format are not reflected as being important components of health care provision, as they are not mentioned specifically. this trend is counteracted to some extent by the relatively frequent mention of ‘non-discrimination’ and ‘individualised services’. both are mentioned in six policies. mentions of these two core concepts remain general (e.g. ‘no discrimination for anyone’ and ‘services relevant for all’) rather than specifying different needs of different vulnerable groups, especially disabled people. these results all reflect the broad nature of these regional documents and their emphasis on building strong health care services that provide equitable access for all but with little unpacking of what equitable access entails for individual vulnerable groups or what ‘for all’ really means. table 4: number of core concepts mentioned in 11 regional policies (ranked by total number of cc mentioned). rating of mentioned core concepts the majority of core concepts were only mentioned (rating 1) or mentioned and explained (rating 2). very few were mentioned together with a specific policy action identified to address the core concept (rating 3). none of the mentioned core concepts included any discussion on intentions to monitor the core concept addressed (rating 4). only four policies had ratings of ‘3’ identifying any policy action. these were the pan african forum for children (may 2001), the draft continental policy framework for promotion of sexual and reproductive health rights in africa (october 2005), au youth charter (july 2006) and the african health strategy (2007).core concepts that were coded as having a specific policy action were ‘protection from harm’, ‘prevention’, ‘non-discrimination’, ‘capacity building’, ‘individualised services’, ‘accountability’, ‘quality’ and ‘access’. analysis of access references the notion of accessibility is one of the four components that ensure equitable access to health care, as discussed at the start of this paper, with the other three being acceptability, availability and quality. accessibility is crucial in facilitating equalisation of opportunities for people with disabilities, making it important to look at this aspect in more detail. the further analysis of access only is driven largely by the high number of mentions of this core concept (28 mentions across 11 policies) relative to the other three. the relevant core concept is ‘access’. there are different components to accessibility – physical, financial and information. the references to ‘access’ in the 11 documents were reviewed in relation to these three components. an additional type of mention is a more general point about ‘access to services’ which is common in the regional documents. the documents frequently make reference to the need for access to health care services but without any further specifications of what this entails. in total there were 28 mentions of ‘access’, ranging from zero to nine mentions per document (table 5). the more general category of ‘equitable access to services’ is the largest of the mentioned components, confirming the broad-stroke nature of the regional policies. while this category does not specifically refer to any of the three components – physical, financial and information access – they are implicit in the phrase ‘access to universal and equitable health care services’ or variations on that phrase. however, given the discussion above, it may be insufficient for these to be mentioned implicitly, and it would be preferable for these policies to make more explicit what is required in order to ensure access to universal and equitable health. the issue of affordable drugs or access to drugs have been coded under ‘financial’ because of its overt reference to financial aspects of this reference – affordable. the lack of further specifications in the ‘access to universal and equitable health care’ may lead to lack of implementation in a context where there are many implementation issues to be considered. this lack, furthermore, may reflect poor or no knowledge of the required specifications and/or the human rights implications of not addressing specific needs of different vulnerable groups. given the argument that policy documents must make clear reference to the needs of vulnerable groups and ways to meet these through implementation as one of the components of ensuring universal and equitable access to health, it is worrying that the regional policy documents fail to provide more detailed specifications. table 5: analysis of access mentions in eleven regional documents. conclusions and recommendations top ↑ the first objective of this paper was to identify relevant au policies for the african region. we identified 11 policies that are current in their application, ranging from ones focused on specific groups (e.g. youth charter) through to one focused on specific issues (e.g. draft continental policy framework for the promotion of sexual and reproductive health and rights in africa). these policies are not exhaustive by any means, but provide a way to start the process of policy analysis proposed in this paper. given the usefulness of this analysis in highlighting gaps in these 11 policies, the recommendation is to continue this type of analysis on a wider range of health and other policies. the second objective of reviewing these policies in relation to core concepts and vulnerable groups showed that there are important gaps in the way the core concepts and vulnerable groups are addressed in these policies. the very general nature of reference to vulnerable groups and the limited mention of core concepts suggests that there is limited scope for guiding countries in developing their national policies. the analysis of regional au policies highlighted the broad nature of the reference made to vulnerable groups, with a lack of detailed specifications of different needs of different groups. this is confirmed in the highest vulnerable group mention being for ‘universal’. the reading of the documents suggests that vulnerable groups are homogeneous in their needs, which is not the case. the needs of a people living far from a health facility are not the same as those for a deaf person attending a clinic. the first requires adequate transport while the second requires an accessible form of communication, such as sign language. this type of nuance is lost in general mentions of vulnerable groups. the regional nature of the policies may explain some of the lack of detail concerning relevant policy actions and intention to monitor, as this would be more suitable in national level policies. however, one would like to see regional policies provide guidelines on these at least. in particular, the number of ratings of 3 and 4 should be increased. increased numbers of 3 ratings would ensure that specific policy actions are identified to address the concept, and of 4 ratings that these policy actions are taken seriously through an intention to monitor the concept. the recent focus on the importance of mainstreaming disability in the discussion on the millennium development goals (mdgs) reflects, firstly, the lack of consideration of disability within the mdgs generally, and secondly, should be an impetus for ensuring that the needs of disabled people and other vulnerable groups are made more explicit in policies. one of the aims of the au is to ‘mainstream gender in all programmes and activities of the union.’ (au n.d.). alongside the mainstreaming of gender, there needs to be mainstreaming of disability needs and those of other vulnerable groups in all the policies and related documentation. the focus should be on diversity management to address all needs of all people. acknowledgments top ↑ this research was funded by the european commission framework programme 7, project title: enabling universal and equitable access to healthcare for vulnerable people in resource poor settings in africa, grant agreement no.: 223501. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this paper. authors’ contributions m.s. (stellenbosch university and university of johannesburg) and a.h.e. (sintef) did the analysis of the regional policies. m.a. (trinity college dublin), h.m. (trinity college dublin) and m.m. (afhad university for women) were team leaders for the development of equiframe. m.s. drafted the paper and all authors contributed extensive comments. references top ↑ african union (au), n.d., viewed 18 october 2009, from http://www.africa-union.org/root/au/aboutau/au_in_a_nutshell_en.htmbuse, k., dickinson, c., gilson, l. & murray, s., 2007, ‘how can the analysis of power and process in policy-making improve health outcomes?’ briefing paper (october), overseas development institute, london. flaskerud, j.h. & winslow, b.j., 1998, ‘conceptualizing vulnerable populations health-related research’, nursing research 47(2), 69−78. http://dx.doi.org/10.1097/00006199-199803000-00005 goudge, j., gilson, l., russell, s., gumede, t. & mills, a., 2009, ‘affordability, availability and acceptability barriers to health care for the chronically ill: longitudinal case studies from south africa’, bmc health services research 9(75), n.p. http://www.biomedcentral.com/1472-6963/9/75 maclachlan, m., mannan, h., el tayeb, s., el khatim, a., swartz, l., munthali, a., van rooy, g., mcveigh, j., eide, a.h. & schneider, m., 2011, ‘equiframe: a framework for analysis of the inclusion of human rights and vulnerable groups in health policies’, health & human rights 13(2), 1−20. makwiza, i., nyirenda, l., bongololo, g., banda, t., chimzizi, r. & theobald, s., 2009, ‘who has access to counselling and testing and anti-retroviral therapy in malawi – an equity analysis’, international journal for equity in health 8(13), n.p. http://www.equityhealthj.com/content/8/1/13 mannan, h., amin, m., maclaclahn, m. with el tayeb, s., el khatim, a., bedri, n., mcveigh, j., swartz, l., munthali, a., van rooy, g., eide, a. & schneider m., 2011, the equiframe manual, the global health press, dublin. http://dx.doi.org/10.1177/1044207312439103 mannan, h., mcveigh, j., maclaclan m., amin m., swartz, l., munthali, a. & van rooy, g., 2012, ‘core concepts of human rights and inclusion of vulnerable groups in the disability and rehabilitation policies of malawi, namibia, sudan and south africa’, journal of disability policy studies 23(2), 67−81. panter-brick, c., 2002, ’street children, human rights, and public health: a critique and future directions’, annual review of anthropology 31, 147–71. http://dx.doi.org/10.1146/annurev.anthro.31.040402.085359 perry, h.b., king-schultz, l.w., aftab, a.s. & bryant, j.h., 2007, ‘health equity issues at the local level: socio-geography, access, and health outcomes in the service area of the hôpital albert schweitzer-haiti’, international journal for equity in health 6(7), n.p. http://www.equityhealthj.com/content/6/1/7 reichard, a., sacco, t. m. & turnbull, r., 2004, ‘access to health care for individuals with developmental disabilities from minority backgrounds’, mental retardation 42(6), 459–70. http://dx.doi.org/10.1352/0047-6765(2004)42<459:athcfi>2.0.co;2 ridde, v., 2008, ‘the problem of the worst-off is dealt with after all other issues’: the equity and health policy implementation gap in burkina faso’, social science & medicine 66(6), 1368–78. http://dx.doi.org/10.1016/j.socscimed.2007.10.026 russell, s. & gilson, l., 2006, ‘are health services protecting the livelihoods of the urban poor in sri lanka? findings from two low-income areas of colombo’, social science & medicine 63(7), 1732–44. http://dx.doi.org/10.1016/j.socscimed.2006.04.017 stowe, m.j. & turnbull, h.r., 2001, ‘tools for analyzing policy on the books and policy on the streets’, journal of disability policy studies 12(3), 206–214. http://dx.doi.org/10.1177/104420730101200306 turnbull, h.r., beegle, g. & stowe, m.j., 2001,‘the core concepts of disability policy affecting families who have children with disabilities’, journal of disability policy studies 12(3), 133–43. http://dx.doi.org/10.1177/104420730101200302 turnbull, h.r. & stowe, m.j., 2001, ‘a taxonomy for organizing the core concepts according to their underlying principles’, journal of disability policy studies 12(3), 177–97. http://dx.doi.org/10.1177/104420730101200304 united nations economic and social council, 2000, substantive issues arising in the implementation of the international covenant on economic, social and cultural rights, general comment no. 14, the right to the highest attainable standard of health (article 12 of the international covenant on economic, social and cultural rights), viewed 2 july 2012, from http://www.unhchr.ch/tbs/doc.nsf/%28symbol%29/e.c.12.2000.4.en. woods, d., kirk, m., agarwal, d., annandale, s., arthur, e., harvey, t., hsu, j., katbamna, r., olsen, s., smith, r., riley, l., & sutton, a., 2005, vulnerable groups and access to healthcare: a critical interpretive review, national co-ordinating centre for nhs service delivery and organization r & d, london. appendix 1 top ↑ appendix 1: example of a completed matrix analysis. appendix 2 top ↑ appendix 2: summary analysis of selected vulnerable groups and core concepts in 11 regional policies. footnotes top ↑ 1.disability as a holistic experience is a barrier to accessing health care but disability is created by a combination of a person’s health condition and a range of barriers and facilitators in the person’s life context. 2.the full title of the equitable project is ‘enabling universal and equitable access to healthcare for vulnerable people in resource poor settings in africa’ and it is funded by the european union funding programme 7 (fp7). further information is obtainable at http://www.sintef.no/projectweb/equitable/. 3.the remaining 7 core concepts were mentioned very rarely or not at all. 4.when using the term ‘policy/ies’ the reference intended includes strategy documents, plans of action, and similar documents that provide guidance and set out principles for users of the documents. abstract introduction research methods and design setting and sample process evaluation ethical considerations results discussion conclusions and implications acknowledgements references about the author(s) joseph k. gona kuhenza for the children foundation, malindi, kenya charles newton centre for geographic research, coast, kenya medical research institute, kilifi, kenya department of psychiatry, oxford university, oxford, united kingdom sally hartley department of psychology, university of sydney, sydney, australia karen bunning school of health sciences, university of east anglia, norfolk, united kingdom citation gona, j.k., newton, c., hartley, s. & bunning, k., 2020, ‘development of self-help groups for caregivers of children with disabilities in kilifi, kenya: process evaluation’, african journal of disability 9(0), a650. https://doi.org/10.4102/ajod.v9i0.650 original research development of self-help groups for caregivers of children with disabilities in kilifi, kenya: process evaluation joseph k. gona, charles newton, sally hartley, karen bunning received: 21 may 2019; accepted: 21 may 2020; published: 22 july 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. we examined the development of self-help groups for caregivers in a rural part of kenya. objectives: to conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status. methods: using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. an evaluation was conducted to investigate implementation and mechanisms of impact. implementation focused on caregiver registration, community group support and monitoring visit compliance. data were collected from group registers, records of meetings and field notes. mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period. results: recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. post-evaluation included 11 active and 7 inactive groups. compliance with the monitoring visits was consistent across the active groups. all groups engaged in ‘merry-go-round’ activities. the active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats. conclusion: self-help groups have the potential to progress in resource-poor settings. however, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership. keywords: caregivers; children with disabilities; community-based inclusive development; self-help groups. introduction children represent approximately 50% of the general population, 5% of whom are estimated to have a disability (world health organisation [who] 2011). more recently, about 95% of 52.9 million children below 5 years with developmental disabilities were estimated to reside in lowand middle-income countries (lmics) (olusanya 2018). compared to 1990 estimates, the authors concluded that there was a lack of significant improvement to the burden of developmental disabilities. the basic needs of the child growing up with a disability, such as shelter, nutrition, clothing, education, health and emotional well-being, are catered for by the caregiver, usually the mother. in lmics, paucity of information concerning the causes of disability, for example, kenya (bunning et al. 2017), limited support services and poor access at community level, makes the caregiver’s role both challenging and onerous (gona et al. 2018). wide variation in rehabilitation services has been reported across the african continent, including poor coordination of delivery, restricted access to services at community level and a continuing need for development work (who 2011). health-based rehabilitation services that exist tend to be clustered around urban-based institutions with reports of serious limitations in coverage and capacity (njelesani, couto & cameron 2011; parnes, cameron & christie 2009). in the circumstance of limited resources (mitra, posara & vick 2011; peters et al. 2018) and social isolation, the caregiver and the child with a disability are disenfranchised and potentially marginalised in their own community (ambikile & outwater 2012; bunning et al. 2017; trani et al. 2011). the family’s finances are impacted by the extra expenses associated with meeting the child’s needs (ambikile & outwater 2012; gona et al. 2016). a report from sierra leone found that families with persons with severe disabilities spent on average 1.3 times more on healthcare than families where disability was not present (trani et al. 2011). these challenges are compounded by a lack of information about the causes of disability and competing explanations in the community based on cultural superstitions and negative images, for example, the child’s disability is attributed to curses or evil spirits (bunning et al. 2017). furthermore, with an estimated third of youth (12–14 years) and approximately 60% of those between the ages of 15 and 17 years not attending school in sub-saharan africa (www.uis.unesco.org/en/topic/education-africa), it is likely that caregivers will lack skills of literacy and numeracy to help advance their quality of life. not surprisingly, long-term caregiving in low-income countries has been associated with fatigue and parenting distress (gona et al. 2014). furthermore, children with disabilities are more likely to have lower school attendance than their non-disabled counterparts with limited support available generally. local access to rehabilitation services is cited as a right by the united nations convention on the rights of people with disabilities (un 2006), although the reality faced by most people in low-income countries is one of scarce and frequently inaccessible resources. community-based inclusive development (cbid), formerly community-based rehabilitation (cbr), provides the potential to circumvent existing gaps in available rehabilitation support. initiatives based on the who cbr matrix (2010) continue to evolve and grow in more than 90 countries worldwide, focusing on strategies for ‘rehabilitation, equalisation of opportunities, poverty reduction and social inclusion of people with disabilities’. however, published studies have been criticised for the lack of research rigour (finkenflugel, wolffers & huijsman 2005). iemmi et al.’s (2015) systematic review identified modest benefits for people with mental disabilities and their caregivers whilst also acknowledging ‘methodological constraints’ (p. 6) in the cited studies. ‘empowerment’ is one of the five domains of the who matrix (who 2010), the others being ‘livelihood’, ‘education’, ‘health’ and ‘social’. seminal studies by kieffer (1984) and zimmerman and rappaport (1988) supported the idea that psychological empowerment includes personal control, a sense of competence, a critical awareness of the sociopolitical environment and participation in community organisations and activities. zimmerman and colleagues (e.g. perkins & zimmerman 1995; zimmerman & rappaport 1988; zimmerman & warschausky 1998) identified three key domains: intrapersonal, how people think about their capacity to influence change utilising critical understanding of context; interactional, how people contribute to transactions with other people and the environment; and behavioural, how people act to influence change in the surrounding environment, for example, through participation in community organisations and activities. the latter point is relevant to cbid initiatives such as ‘self-help groups’ (shgs), which are identified in the ‘empowerment domain’ (who 2010) and bring new opportunities for social connections and support in the community. self-help groups are grassroot-level organisations that build on the traditions of collective savings and shared livelihood activities. their purpose is to promote peer assistance and cooperation for the mutual benefits of the members (gugerty, biscaye & anderson 2019). a variety of models have been used in lmics for different purposes, including education for an alternative livelihood in kenya (unesco 2015); promoting well-being amongst people with mental health needs in ghana (cohen et al. 2012); raising awareness of disability issues in the community in south africa (adams & galvaan 2016); social support through training for caregivers of children with disabilities in ghana (zuurmond et al. 2019); promoting agricultural practices across remote, rural regions of sub-saharan africa (self-help africa) and asia (atteraya, gnawali & palley 2016); and use of microfinance to mitigate the effects of humanitarian crises in ethiopia (tearfund 2017). few formal evaluations that distinguish independent variables (e.g. interventions) from co-variables (e.g. environmental factors) have been reported (gugerty et al. 2019), with the exception of studies originating in asia. atteraya et al. (2016) found that individual capabilities (e.g. educational experience, home assets, autonomous decision-making) were significantly correlated with active participation in the shgs. this finds resonances in patil and kokate’s (2017) analysis of factors underpinning participant attitude formation towards shgs that included ‘coping ability’, ‘personality traits’, ‘resource utilisation and building’, ‘entrepreneurial attributes’, ‘organisational governance’, ‘financial inclusion’ and ‘economic upliftment’. another study in india considered group process characteristics such as commitment and cooperation of members, absence of conflicts and transparency of communication to be critical to positive shg outcomes (govindarajan & padhmanabhan 2013). regarding impacts, reported outcomes associated with shg participation include the following: more positive attitudes and a reduction in perceived isolation (zuurmond et al. 2019), and improved financial and social support (cohen et al. 2012; swain & wallentin 2012). a systematic review of shgs for women in asia, sub-saharan africa and the caribbean revealed economic gains and political empowerment (brody et al. 2017). reported challenges to shg participation include the following: competing priorities and time poverty, managing the tensions between individual and group goals (adams & galvaan 2010); differences in community status (e.g. caste differences in india); disappointment in expected benefits; and stigma associated with membership (brody et al. 2017). however, inadequate documentation of group processes remains a problem in attributing change to any one model of self-help. to understand the functional status of the shgs at the end of a 10-month set-up period, the current study aimed to carry out a process evaluation. the research question was: what characteristics and processes define the functional status (active vs. inactive) of shgs? research methods and design the project adopted a realist evaluation design (pawson & tilley 1997), which recognises that programmes work in different ways for different people. it was expected that the development of 20 shgs in different geographical locations would be influenced by the experiences, beliefs and attitudes of the participants; the available opportunities; access to resources relevant to the context; and environmental conditions. setting and sample the setting was kilifi county (area: 12 610 km2; poverty level: 71.4% – kenya commission revenue allocation). the sample was composed of caregivers of children with disabilities across 10 sub-locations in kilifi county. the primary caregiver was included if: she or he was 18 years old and above and cares for a child (0–15 years) with a developmental disability present from birth, noted in first 5 years of life or considered long-term parental report identified the child as showing a deficit(s) in one or a combination of the following areas: seeing, hearing, moving, dribbling, drinking and eating, paying attention, sitting still, learning, understanding, or experiences epileptic seizures (fits) (derived from the first section of the communication disability profile: baker & hartley 1999) the child’s disability was associated with a primary condition, for example, cognitive impairment, deafness, visual impairment, autistic spectrum condition, cerebral palsy and multiple disabilities. caregivers were excluded where the child’s condition was temporary and possibly associated with a medical trauma, for example, fractured limb, and likely to resolve with appropriate treatment, or related to a need that could be resolved through the provision of corrective devices, for example, glasses for myopia. to engage the community in each targeted sub-location and to secure the support of the sub-chief responsible for community affairs, a field worker, a resident of kilifi, went to the designated sub-chief’s office to arrange a visit by the project co-ordinator (also a local resident). at the meeting, project information was provided to the sub-chief and any questions were fielded. caregiver recruitment was carried out by 20 existing community groups (women groups [wg]; community health worker groups [chw]), who had participated in a previous study on disability awareness training (gona et al. 2018). each of two groups per sub-location was asked to identify around 15 caregivers of children with disabilities who were known to them, making a target recruitment number of 300 caregivers (see figure 1 for the location of the shgs across kilifi county). an inaugural meeting was arranged for each shg development site. members of the wgs and chw groups who had identified caregivers in their own communities accompanied the caregivers to this first meeting to learn about the project. informed consent was recorded for those caregivers who wanted to participate in the development of shgs, whereby information was read out, questions were addressed and participation decisions were recorded by signature or thumbprint. figure 1: map of kilifi county showing the locations of the self-help groups across the five constituencies: functional status indicated. process evaluation process evaluation was carried out during the set-up phase of the project (over 10 months). it focused on two domains (moore et al. 2015): (1) implementation, or the approaches taken to set up and support the shgs with a focus on group set-up (caregiver mobilisation and registration, monitoring visits completed and adaptations); and (2) mechanisms of impact, or group responses to the development process, with a focus on group activities and membership, processes and characteristics (internal or external to the group) and their association to group functional status. after the initial meeting for information sharing and recording consent, those who were interested in taking part were registered individually using a prepared excel spreadsheet addressing the following fields: sex, age range, marital status, educational level, number of children with and without disabilities and quality of life indicators (quality of dwelling, caregiver clothing and footwear, number of meals served and livestock owned). each group was encouraged to assign the roles of chairperson, treasurer and secretary amongst the membership, to agree on a name and to start up an income generating activity to increase their available resources. each group was given a hard-backed exercise book and pen to record their meetings (date and time; members present; items discussed; income). post-registration, monitoring visits were carried out by the project co-ordinator, who as a resident of kilifi was familiar with the culture and conversant in all the local languages. each group was visited at once monthly intervals, arranged in advance by mobile phone communication with the chairperson. the visits took the form of question–answer interactions with the group, review of their ledger on member attendance and activities – supplemented by an oral report, identification of any difficulties experienced with problem-solving as required. field notes were recorded in situ and later entered into a prepared excel spreadsheet recording co-ordinator role assignment, group activities and observations made by the researcher. at the end of the set-up period, a comprehensive review of all the groups was conducted by examining the two domains of (1) implementation and (2) mechanisms of impact. the former (1) focused on caregiver mobilisation by community groups, caregiver registration data, monitoring visits completed and adaptations. the latter (2) focused on the groups’ constitutions, activities, processes and characteristics (internal or external to the groups). to evaluate implementation of the shg set-up, descriptive statistics were applied to the data (participant demographics, monitoring visit compliance and any adaptations recorded in the field notes) according to group functional status (active vs. inactive). to evaluate the mechanisms of impact, the entire data set was reviewed using a framework of strengths–weaknesses–opportunities–threats (swot: see helms & nixon 2010), with the first two components addressing factors internal to the group composition, and the latter two addressing external factors. the swot analysis was carried out collaboratively by the first author, a native of the area, who was responsible for group facilitation and monitoring visits, and the last author, a visitor to kilifi, who provided a remote perspective. each shg was reviewed in succession and their characteristics recorded on a prepared swot matrix initially. this involved review of the registration characteristics of the caregivers, their quality of life indicators, recorded group compliance rates with monitoring visits and field notes from visits (identifying group income generating activities). in addition, the last author asked the first author to describe each group in his own words using prompts such as: how do the members function as a group? what are their particular strengths or weaknesses? what difficulties have the group encountered? the research co-ordinator’s responses were added to the appropriate section of the swot matrix. a second iteration involved the last author reviewing each shg’s completed swot matrix, comparing them for commonalities and differences and making adjustments as required. this was then reviewed with the first author until consensus on the content of each shg’s swot matrix was established. the last stage involved producing two summary swot matrices for the active groups and the inactive groups. similar items were categorised and assigned a label. these were reviewed and discussed by the two researchers until agreement was achieved. finally, a single swot matrix was rendered that combined the two swot summary matrices indicating commonalities and differences according to functional status. ethical considerations this study was approved by the scientific ethics and review unit (seru) of kenya medical research institute (kemri) (approval number: seru 0016/3132) in nairobi, kenya. results implementation the community groups (10 chw; 9 wg) identified around 280 caregivers out of the targeted 300 to start up shgs. one wg failed to identify and mobilise any caregivers, which left 19 groups for development, as shown in figure 1. however, only 18 groups achieved registration of the caregivers because of one group disbanding shortly after mobilisation. of the remaining 18 shgs, the functional status at the end of the set-up period was as follows: 11 active groups (operational) and 7 inactive groups (disbanded). figure 1 shows the location and functional status of the 19 groups. tables 1 and 2 summarise the characteristics of the registered caregivers according to group functional status post-set-up. table 1: summary of compliance with implementation across active and inactive groups post-registration. table 2: summary of caregiver characteristics registered to 18 self-help groups: functional status indicated. as shown in table 1, the chw groups were responsible for bringing caregivers together for 11 shgs compared to 6 shgs by the wgs. the amount and frequency of meetings varied across the shgs. the active groups met at weekly intervals, which amounted to around 40 meetings over 10 months, each meeting lasting 2–3 h. monitoring visits were successful according to the monthly arrangements made, as shown in table 3. of the inactive groups, two of the seven came together as a group for less than a 3-month period before disbanding. the remaining five groups continued to meet for between 3 and 5 months. follow-up visits were arranged when the membership failed to attend a monitoring visit, by contacting the relevant chairperson. however, these were largely unsuccessful (see table 1). the inactive shgs showed inconsistent attendance and poor representation of the membership at the visits with as few as one or two members being present on occasions. table 3: summary of demographic characteristics for caregivers registered to 18 self-help groups: functional status indicated. all the 18 groups decided on a name and assigned officer roles amongst their membership (chairperson; treasurer; secretary). in some cases, an additional role was assigned – that of a co-ordinator who facilitated the work of the other officers. typically, this role was fulfilled by a member of the community group who had been involved in the original mobilisation of the caregivers. mechanisms of impact as shown in table 1, responses to the development process were initially favourable with all 18 shgs embarking on merry-go-round activities, where, according to the agreement of the group, each member contributes either a small sum of money (e.g. around ksh 50) or food stuffs (e.g. bag of maize flour, sugar). once the treasurer has collected the member contributions, the collection is divided amongst three to four members who use their allowance to improve the situation at home, for example, cooking cakes to sell at profit. in addition, seven of the shgs (active) embarked on group income generating projects (other activities), including, for example, making and selling liquid soap, makuti for roofing; rearing livestock (chickens, goats); breaking stones into gravel for building. there was minimal difference between the active and inactive groups in terms of caregiver characteristics (see table 2). as shown in table 2, between 23% and 25% of the members of both active and inactive groups had completed primary education. however, a slightly higher percentage of active group members had attained a secondary level of education (8%) compared to 4% of the inactive group’s membership. in terms of demographic characteristics, there was again little difference between the groups according to their functional status (see table 3). caregiver clothing, specifically footwear, was much more common amongst the active group members (see table 2). in addition, 56% of the inactive group members served two or less meals per day compared to those in the active groups (46%). internal factors were reflected in strengths and weaknesses of all the groups, and external factors in the opportunities and threats. however, the balance varied between active and inactive groups, with the former being weighted towards strengths and opportunities, and the latter towards weaknesses and threats. as summarised in figure 2, the majority of the active groups had a strong and consistent leader, often with the continued support of members of the local chw or wg. sometimes, a person had dual membership of both the shg and a community group, which enabled the sharing of group experiences and skills. in one group, a chw continued as a member of the shg, supporting the leader by contributing her literacy and numeracy skills for recording group discussions and work transactions. a stable membership, committed to the group’s activities, was evident in the regular attendance of weekly meetings and the commitment of team members. critical mass appeared to be important to the development capacity of the groups, with activity success being threatened in smaller groups by a lack of persons to input their labour. early identification and management of threats, for example, breaking away from a large chaotic group, risk management of income generation activities, enabled the groups to grow. however, the active groups were not without weaknesses. two groups relied on a few caregivers with poor commitment from the rest of the members. such vulnerabilities demanded close monitoring and support for those members. restricted literacy and numeracy skills amongst members were a problem in one or two groups, affecting management of group finances and recording decisions. threats that were identified tended to centre on interference from external people, for example, fraudulent activity by people in the community attempting to take money from the group, individual members demanding hand-outs and environmental conditions such as drought – the latter affecting food and water supplies. notice of such threats was brought to the attention of the researcher who gave advice that served to mitigate any potentially disastrous impacts on the group. lack of a secure meeting place was a minor threat for a couple of groups, for example, located under a tree that would be affected by the rainy season; an incomplete building structure because of be completed for use by the police service. figure 2: summary of strengths–weaknesses–opportunities–threats analysis for active and inactive groups: shared characteristics and processes indicated in italics (separate characteristics are indicated in brackets: active groups [ag] and inactive groups [ig]). opportunities for the development of key skills, such as chairing a meeting, recording the notes and the financial transactions, were available to all groups. however, income generation was grasped by the groups with variable success. the seven groups who started up income generation activities were all in the active category. the inactive groups demonstrated inherent weaknesses from a very early stage, such as poor and inconsistent leadership. this made them vulnerable to external threats, even though similar threats were identified for the active groups. together with a lack of consistent leadership, a geographically dispersed membership affected group cohesion. in one area particularly (bamba), the effects of drought threatened the set-up of groups from the start, as caregivers had to prioritise the search for water for their families over attendance of shg meetings. in some cases, the fraudulent behaviour of others (both within the group and externally) who took money and food stuffs under false pretences affected the morale of members and their motivations to keep going. discussion out of 20 targeted shgs, two groups failed to achieve registration. at the end of the set-up period, seven groups out of the 18 registered groups had disbanded. eleven groups were still functional. all 18 groups had decided on a named identity, assigned officer roles in their group and embarked on merry-go-round activities. however, membership and compliance with monitoring visits varied across the groups. characteristics associated with the collapse of the inactive groups included the following: poor leadership, inconsistent attendance and failure to comply with monitoring visit requirements; poor availability of key skills, such as numeracy and literacy; interference from former members and others outside of the group; and harsh environmental conditions affecting livestock and access to water. in contrast, the active groups appeared to have greater commitment amongst the membership and attendance of meetings, with monitoring visits happening as planned; better access to numeracy and literacy skills amongst the members (with the exception of one shg); the means for addressing external threats through timely advice; and capacity to develop start-up projects for income generation. some groups did not progress beyond initial registration because of competing needs in the home brought about by the extreme drought conditions affecting east africa. maslow’s motivation theory based on a hierarchy of need places this at the foundation level: physiological (koltko-revera 2006; maslow 1943). without water, the threat to family survival was present. thus, the search for water was prioritised over participation in the shg development, which is consistent with challenges identified by adams and galvaan (2010). in addition, caregiver dispersal over a large geographical area may have been a factor in their coming together for meetings. this was despite a recruitment strategy via established community groups operating in a defined geographical area. transport limitations and a lack of finances would also likely have affected their attendance (ambikile & outwater 2012; gona et al. 2016). beyond a ‘physiological’ level of need, threats to ‘safety’ were present in all the groups, active and inactive. the mere act of registering with an shg meant identifying themselves as caregivers of a child with disabilities and possibly opening themselves to aversive responses from the community where stigma was present (see bunning et al. 2017). this may have been a factor in the failed registration of caregivers in one shg after their initial mobilisation. attaining a level of ‘belonging and love’ (maslow’s third level) could be seen to be dependent on the established ‘safety’ of the group and its members. individuals asserting their own needs over those of the membership brought tensions to some groups, which resonates adams and galvaan (2010) and brody et al. (2017). however, greater threats were encountered from persons external to the shg development. whilst all the groups encountered threats from dishonest individuals in the community, the inactive shgs experienced such threats very early on – in the first 2–3 months. it is possible that the embryonic status of the groups rendered them as vulnerable to disruption. in contrast, the later threats to the active groups happened at a time when relationships amongst the caregivers had been established. this corresponds to maslow’s third level of need: ‘love and belonging’. there was commitment to the group processes such as the monitoring visits, which provided opportunities for leveraging help on how to not only address problems faced by the group, but also to progress their activities. empowerment theory as defined by kieffer (1984) and zimmerman and rappaport (1988) would explain this as the growth of control and awareness of the sociopolitical context in which the groups were functioning. the merry-go-round activities were designed to support trust amongst the members (critical to a sense of belonging), as well as providing learning opportunities for handling goods and money as a precursor the income generation projects. however, the inactive groups faltered at this stage and did not progress to livelihood activities, compared to 7 out of the 11 active shgs. nevertheless, these activities were critical components of capacity-building. the members gained important experiences in the handling of goods and money, leading onto income generation projects, which reflects cohen et al.’s (2012) findings. in this context, attainment of maslow’s higher levels of ‘esteem’, where recognition of self contributes to developing agency, and ‘self-actualisation’, where aspirational potential and the desire to affect change, was relevant. the extent to which educational level of achievement amongst the membership was important to group sustainability has relevance. limited fulfilment of caregiver education was generally consistent with recent statistics in sub-saharan africa (www.uis.unesco.org). furthermore, there was greater representation of caregivers who had completed their secondary education in the active groups compared to the inactive. this difference in the active and inactive group membership is consistent with atteraya et al. (2017) and patil and kokate (2016) who asserted the critical importance of individual capabilities to active participation, which included educational background. it was the case that the majority of the groups, active and inactive, relied on just two or three members with the greatest competence in literacy and numeracy, for organising and recording the group’s activities. having ties with an already established community group, for example, chw or wg, either through affiliation or through dual membership of two groups (shg and chw/wg), brought essential capabilities and prior experience, which may have had a positive effect on group operations. however, the inactive groups had lower access to someone with secondary-level education generally. whilst officer roles were assigned in all the groups, leadership was a critical component of the business conducted by the groups. the strong leadership in the active groups, which was always associated with primary or secondary educational level of achievement, supported what zimmerman and colleagues referred to as a critical understanding of context and how to bring about change (e.g. zimmerman & rappaport 1988; zimmerman & warschausky 1998). thus, the leader may have affected the direction taken by the group in terms of income-generating projects. strengths and limitations in a context of scarce reporting of development work of this nature, the strengths of the current study lie in the report of contrasting features of active and inactive groups. however, information on caregiver attendance of group meetings was recorded inconsistently and could not therefore be reported with any accuracy. the swot analyses were conducted at the end of the set-up period. however, a swot analysis at the midway point may have yielded further information about the development process. this would require more extensive resources for the research. conclusions and implications the functional status of shgs, their active or inactive status at the end of a set-up period, appeared to be associated with characteristics and processes both within and external to the groups. threats to the new enterprise of shgs were present for all the groups. motivations to participate in the groups were undoubtedly affected by drought, particularly for the communities worst affected by the environmental conditions. beyond competing physiological needs, the timing of threats in the group’s development process seemed to be important. early disruptions rendered some groups vulnerable to dissolution. of course, the monitoring visits provided opportunities for leveraging help once a sense of trust and belonging in the group had been established. thus, compliance with monitoring visits appeared to be critical to group survival and growth in the set-up period. it is possible that such threats might be countered by early investment in group education, for example, helping the groups to identify potential sources of threat to the group’s safety from the very start and putting contingencies in place to support their address, for example, referring troublesome matters to the project co-ordinator for advice. thus, group safety is a central consideration in the set-up of shgs and crucial to a sense of belonging for progression of activities. capabilities amongst the membership and strong leadership appeared to be important to group operations. effective book-keeping and accounting enabled the active groups to plan and embark on income generation projects. this might possibly point to a recruitment strategy that purposively seeks to include sufficient caregivers with achievement at primary-level or even at secondary-level education, to ensure the smooth organisation of group business. alternatively, awareness of the relevance of capabilities and education to the success of a group might trigger early capacity-building amongst the membership, focusing on processes to support group management and organisation. finally, the active participation of caregivers in newly formed shgs is subject to conditions both external and internal to the group. to sustain group development and to achieve growth in self-help activities, pathways for strategic support and capacity-building need to be in place at the start of the set-up. in such circumstances, the approach to shgs has the potential to contribute to the evidence based on cbid/cbr initiatives development. acknowledgements the authors would like to thank kemri-wellcome trust for allowing them to publish the data. they acknowledge the contributions of all caregivers for their time and commitment in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.g. was responsible for the study design, data collection, data analysis and write-up. c.n. was responsible for data analysis and write-up. s.h. was responsible for the study design, data analysis and write-up. k.b. was responsible for the study design, data analysis and write-up. funding information this study was supported by cp charitable fund, united kingdom, and kemri-wellcome trust research unit, kilifi, kenya. data availability statement data cannot be shared publicly as a result of the terms for data sharing included in the consent forms. data are available by written application to the data governance committee of the kemri wellcome trust research programme (contact via data_governance_committee@kemriwellcome.org) for rearchers who meet the criteria for accessto confidential data. the data set name is call_3 (seek). disclaimer all the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references adams, f. & galvaan, r. 2016, ‘promoting human rights: understanding the barriers to self-help groups for women who are carers of 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community-based rehabilitation (cbr) guidelines, world health organization, geneva. world health organization, 2011, world report on disability, world health organisation, geneva. zimmerman, m.a., israel, b.a., schulz, a. & checkoway, b. 1992, ‘further explorations in empowerment theory: an empirical analysis of psychological empowerment’, american journal of community psychology 20(6), 708–727. https://doi.org/10.1037/0090-5550.43.1.3 zimmerman, m.a. & rappaport, j., 1988, ‘citizen participation, perceived control, and psychological empowerment’, american journal of community psychology 16(5), 725–750. https://doi.org/10.1007/bf00930023 zimmerman, m.a. & warschausky, s. 1998, ‘empowerment theory for rehabilitation research: conceptual and methodological issues’, rehabilitation psychology 43(1), 3–16. https://doi.org/10.1037/0090-5550.43.1.3 zuurmond, m., nyante, g., baltussen, m., seeley, j., abanga, j., shakespeare, t. et al., 2019, ‘a support programme for caregivers of children with disabilities in ghana: understanding the impact on the wellbeing of caregivers’, child: care health & development 45(1), 45–53. https://doi.org/10.1111/cch.12618 abstract introduction methods results discussion conclusion acknowledgements references about the author(s) katijah khoza-shangase department of audiology, faculty of human and community development, university of the witwatersrand, braamfontein, south africa jasmine bent department of audiology, faculty of human and community development, university of the witwatersrand, braamfontein, south africa citation khoza-shangase, k. & bent, j., 2024, ‘south african parents’ views on oral, signing, and bilingual communication for deaf or hard-of-hearing children’, african journal of disability 13(0), a1511. https://doi.org/10.4102/ajod.v13i0.1511 original research south african parents’ views on oral, signing, and bilingual communication for deaf or hard-of-hearing children katijah khoza-shangase, jasmine bent received: 04 july 2024; accepted: 04 nov. 2024; published: 20 dec. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: parents of deaf or hard-of-hearing (dhh) children are faced with a plethora of overwhelming decisions concerning their children, particularly during the early stages of development. among these decisions are those concerning assistive devices and the modes of communication for their child. objectives: the aim of this study was to explore the perceptions of parents of dhh children towards the various modes of communication for their children within the south african context. method: the study adopted a q-methodology research design. participants rated statements according to what they least and most agree with and then answered follow-up questions concerning the statements. participants were also invited to participate in a live, one-on-one, semi-structured interview with the researcher. data were analysed through both qualitative and quantitative statistics. thematic analysis was adopted to analyse the qualitative data, while factor analysis through ken-q analysis was used for quantitative data. results: although 66% of participants thought that sign language allows dhh children to communicate more freely, 88% agreed that a dhh child should always learn to speak if they can. in terms of decision-making, 88% reported the issue of stigma or marginalisation and 88% cited the lack of deaf schools as barriers in their decision-making. conclusion: the study’s findings provide valuable insights into the complex interplay of factors influencing communication mode decisions for dhh children in south africa. contribution: these insights are crucial for developing inclusive and effective communication strategies that consider individual needs, societal norms and access to support services. keywords: deaf and hard-of-hearing (dhh) children; communication modes; south african context; parental decision-making; oral communication; sign language; bilingual communication; cultural influences; communication outcomes. introduction deafness and other chronic hearing impairments continue to be among the most prevalent congenital conditions globally (baron et al. 2019; korver et al. 2017). to be deaf or hard-of-hearing (dhh) certainly does not mean to be devoid of communication, there are varying modes of communication one could utilise, such as oral communication (spoken language), manual communication (sign languages such as south african sign language) and visual communication methods (gestures or visual aids). in addition, some parents may opt for a bilingual approach, integrating both spoken and sign languages to enhance communication flexibility and inclusivity (casoojee & khoza-shangase 2022; takala, viljamaa & fredäng 2018). some of these modes of communication are associated with certain amplification devices that facilitate that mode of communication, such as cochlear implants (cis). internationally, ever since the emergence of cis in the late 1900s, numerous parents with dhh children who wish for their child to develop spoken language have opted for cis as they believe that this amplification device will be more successful than the alternative of hearing aids (bradfield 2021). while the number of ci surgeries continue to increase, ci services are still underused worldwide, with only a fraction of those qualifying for ci surgery actually undergoing the procedure, particularly in low-middle income contexts such as south africa (bhamjee et al. 2022; casoojee & khoza-shangase 2022). this reality is because of a number of factors, the most common being patient or parent choice, financial constraints and patient age at diagnosis (bhamjee et al. 2022; casoojee & khoza-shangase 2022). while there have been measures taken to advance the south african public healthcare sector, there are still considerable limitations when it comes to financial resources and the provision of audiological services from prevention to rehabilitation (casoojee & khoza-shangase 2022). results across studies have been inconsistent; however, children with no comorbidities who undergo ci surgery at a young age appear to have increased chances of successfully developing spoken language (sharma et al. 2020; baron et al. 2019). be that as it may, there has been considerable pushback against cis, particularly within the deaf community, with some members likening the ci procedure to a form of genocide against the deaf community (bradfield 2021; lee 2016). it is believed by some that sign language should be the preferred mode of communication for children who are dhh and that encouraging the use of spoken language instead separates them from their culture for the sake of mainstreaming into the hearing world (bradfield 2021). this is especially persuasive, considering that the deaf community are already a cultural minority, and thus the significance of sign language in preserving deaf culture (mauldin & fannon 2021). even still, this idea of mainstreaming into the hearing world is not considered concerning by all, with some suggesting that providing the child with speech and hearing will be of the most benefit to the child in a world that overwhelmingly favours those who are hearing and speaking (bradfield 2021). this study’s focus is thus considered contentious for these reasons as a consensus is yet to be reached regarding the ethical implications of implanting or not implanting a ci and determining which mode(s) of communication children born with dhh should use (bradfield 2021; putnam et al. 2022). studies have been conducted that examine this controversy from varying perspectives and with varying outcomes; however, there is a dearth of research, particularly from the african context, focusing on parents’ perceptions towards the various modes of communication for dhh children. parents’ perceptions play a crucial role in determining the communication routes chosen for dhh children. in south africa, where approximately four to six in every 1000 babies are born with a hearing impairment, the decision-making process regarding communication modes for these children is complex and multifaceted (davids, roman & schenck 2021; joubert & botha 2019). this decision about the communication mode choices is influenced by various factors such as parental beliefs, cultural considerations, access to resources such as cis and the impact on the child’s social and linguistic development (casoojee, kanji & khoza-shangase 2021; nichol 2020). parents play a crucial role in the decision-making process regarding communication modes for their dhh children, with their choices deeply influenced by their backgrounds, beliefs and personal experiences. cultural and linguistic heritage often shapes parents’ preferences, with some prioritising spoken language to align with societal norms and perceived opportunities, while others may value sign language as a means of preserving deaf culture and identity (casoojee et al. 2021; mcmenamin 2019). religious beliefs, particularly those related to disability, can also influence decisions, with some parents viewing hearing loss as something to ‘overcome’ through oral methods (kemmery 2014). additionally, parents’ prior experiences with disability, whether through personal encounters or community interactions, can lead to varying degrees of openness to different communication methods. the perceptions and choices of parents regarding these communication routes play a pivotal role in shaping the linguistic and social development of dhh children. understanding the contextually relevant factors that influence these parental perceptions is crucial for designing effective interventions and support systems, including policies. one of the primary influencing factors is personal judgement (nichol 2020). parents often weigh the benefits and challenges of each communication mode based on their understanding of their child’s needs, abilities and preferences. this includes considerations such as the child’s comfort with different communication methods, their proficiency in spoken language versus sign language and their overall communication goals (hall & de anda 2021; nichol 2020). cultural connections also play a significant role in parents’ decisions regarding communication modes for dhh children. cultural identity and community affiliation can impact whether parents choose a communication mode that aligns with their cultural background and values. for example, parents who strongly identify with deaf culture may prioritise sign language as the primary mode of communication for their child, emphasising cultural continuity and community connection (bradfield 2021; mauldin & fannon 2021; nichol 2020). furthermore, healthcare professional advice and recommendations are essential influencers in the decision-making process. parents often seek guidance from audiologists, speech-language pathologists and other healthcare professionals who specialise in working with dhh children. these professionals provide valuable insights into the potential benefits, challenges and outcomes associated with different communication modes, helping parents make informed decisions (decker, vallotton & johnson 2012; nichol 2020). understanding these influencing factors is crucial for developing effective communication strategies for dhh children. it requires a holistic approach that considers the child’s individual needs, cultural background and professional guidance to ensure optimal communication outcomes and support their overall development and well-being. this article, therefore, aims to explore south african parents’ attitudes and perceptions towards the oral, signing and bilingual routes of communication for their dhh children. by delving into the motivations, beliefs and challenges faced by parents in making these decisions, this study seeks to contribute to a deeper understanding of the factors driving communication mode choices in this population. ultimately, the insights gained from this research can inform policies and practices aimed at enhancing the communication outcomes and overall well-being of dhh children in south africa. the gap in research from the african context could emphasise the unique cultural, social and economic factors in south africa that significantly influence parental decisions regarding communication methods for dhh children. in south africa, the linguistic diversity, with 11 official languages and sign language, creates challenges in accessing resources and support in a child’s home language, particularly for sign language (davids et al. 2021; maluleke, khoza-shangase & kanji 2021; shezi & joseph 2021). additionally, the historical marginalisation of sign language and the limited availability of schools for the dhh further constrain parental choices (holness 2016; senne 2016). economic disparities also play a critical role, as access to cochlear implants and hearing aids is often limited to those with financial means, leaving many parents to rely on less expensive, sometimes less effective, communication methods that they can only access from the public healthcare system that is overburdened. socioeconomic status further impacts these decisions, as access to resources such as cochlear implants, specialised education and speech therapy can be limited, pushing parents to make choices based on what is available rather than what might be most effective. ultimately, these diverse factors contribute to a complex and deeply personal decision-making process, where parents must balance their aspirations for their child’s future with practical realities and deeply held values. furthermore, societal attitudes towards disability, influenced by cultural beliefs and stigmas, can pressure parents to prioritise spoken language acquisition over other communication methods (mkabile & swartz 2020). these factors collectively shape the complex landscape in which south african parents make decisions for their dhh children, highlighting the need for culturally and contextually sensitive research and support. the theoretical framework underpinning this study is grounded in the models of communication for dhh children, which encompass oral, signing and bilingual approaches. these models are informed by linguistic, cognitive and sociocultural theories that emphasise the importance of early and effective communication in the cognitive and social development of dhh children (easterbrooks 2020). the oral approach is rooted in auditory-verbal therapy and speech-language pathology, focusing on the development of spoken language through residual hearing and speechreading. in contrast, the signing approach is based on visual-manual communication, primarily using sign language as a natural language for dhh individuals, promoting linguistic accessibility and cultural identity within the deaf community. the bilingual approach integrates both spoken and sign languages, recognising the cognitive benefits of bilingualism and promoting a dual-linguistic pathway for dhh children (easterbrooks 2020; hatrak 2022; pizzo 2016). these models serve as the foundation for exploring the parental decision-making process in the south african context, where cultural, social and economic factors play a crucial role in shaping communication choices for dhh children. methods aim the primary goal of this study was to delve into south african parents’ perceptions regarding the oral, signing and bilingual routes of communication for their children who are dhh. objectives the specific objectives were twofold: to delve into parents’ perceptions regarding the oral, signing and bilingual routes of communication. to investigate the factors and motivators that influence parents’ decisions regarding the modes of communication their child will adopt. research design this study employed q-methodology and qualitative analysis of semi-structured interviews, both of which were chosen to capture the complexities of parents’ perspectives on communication modes for dhh children. these methods complement each other, allowing for a mixed-methods approach that provides both breadth and depth in understanding parental decision-making processes. q-methodology was selected because it is particularly well suited for exploring subjective viewpoints and identifying patterns of shared beliefs among participants (akhtar-danesh, baumann & cordingley 2008; gao & soranzo 2020; klein 2022). this method helps to organise complex attitudes into manageable clusters, making it ideal for a study that seeks to understand diverse parental perspectives on communication options. by asking participants to rank statements related to communication choices, the q-methodology enabled the grouping of like-minded individuals and revealed trends in their preferences. this clustering, based on pearson’s correlation coefficient and horst’s centroid method, allowed us to identify distinct ‘factors’ or clusters of parents with similar views (klein 2022). q-methodology provided structure to the data by offering a quantitative way to capture the subjective experiences of parents, thus balancing the rich, qualitative insights from interviews with statistically supported clusters of attitudes. the qualitative analysis was conducted following semi-structured interviews to delve deeper into the personal, cultural and emotional factors that influence parents’ decisions. semi-structured interviews were chosen for their flexibility, enabling participants to express their views while the researcher maintained the ability to probe specific areas of interest. this method is appropriate for exploratory research where participants’ experiences and reflections are key to understanding complex decision-making processes. the instrument used in this study, distributed using the survey planet platform, comprised a list of 27 statements, in english, that participants rated according to what they most and least strongly agree with (damio 2016). this exercise took approximately 10 min – 20 min to complete. the statements represented the broad but generalised range of viewpoints one would have on the topic (klein 2022). for example, in this case, statements ranged from: ‘it is not necessary for a deaf or hard-of-hearing child to learn how to speak’. to ‘if a deaf or hard-of-hearing child can learn to speak, they always should’. following this rating, participants were asked to answer a few open-ended questions concerning the topic. finally, they were invited to participate in an additional, semi-structured interview to discuss the topic and elaborate on their responses further. questions such as: ‘what were the key reasons behind your agreement or disagreement with the statements in the survey?’; ‘do you think your viewpoint is common or do you feel that you are in a minority who feel this way?’; ‘would you say that your agreement or disagreement with the statements was influenced by outside factors (e.g., conversations with medical practitioners, conversations with other parents or loved ones, online resources, the media, etc.)? if yes, what were the main external factors?’, formed the interview guide. these interviews took place either over the phone or in-person, depending on what was more convenient for the participant, and lasted for approximately 15 min – 30 min. the interview was audio recorded and then transcribed for analysis. this approach allowed for a blend of qualitative depth and quantitative analysis, particularly beneficial for subjective topics such as perceptions of communication routes (damio 2016; gao & soranzo 2020; klein 2022). research site the initial research site was the children’s communication centre in houghton, johannesburg, which focuses on teaching dhh children oral and/or auditory skills in english. however, because of a low response rate from targeting only one institution, a research poster was designed and shared online via social media (facebook, x [formerly twitter], whatsapp) to enhance participation. participants the study employed non-probability convenience sampling and voluntary response sampling strategies. nine participants met the survey criteria, with an additional five participants interviewed for more detailed insights (klein 2022; mccombes 2023). the selection criteria included parents or legal guardians of dhh children who were south african citizens or permanent residents. minors and individuals unable to provide informed consent were excluded. data collection procedures the q-set used in the study consisted of statements reflecting different viewpoints, sourced from relevant literature (bradfield 2021; chang 2017; crowe et al. 2014; gale 2010; mauldin 2012; nichols 2018). data collection procedures included obtaining ethical clearance (protocol number: sta_2023_15), conducting a pilot study for refinement and then administering online surveys, with additional interviews for deeper insights. ethical principles outlined in the belmont report and hpcsa general ethical guidelines were strictly adhered to throughout the study. data analysis thematic analysis was employed for qualitative data, while factor analysis, specifically ken-q analysis, was used for quantitative data to group participants based on their responses (du plessis 2019; klein 2022; nowell et al. 2017; vaismoradi, turunen & bondas 2013). the qualitative data in this study were analysed using a detailed and systematic approach to thematic analysis (nowell et al. 2017). an inductive thematic analysis was adopted following braun and clarke’s (2006) approach to analyse the semi-structured interview data. this method was specifically selected because of its flexibility and its capacity to identify, analyse and report patterns across the data set in rich detail. an inductive approach meant that the themes identified were strongly linked to the data themselves, without being influenced by pre-existing theories or frameworks. this was crucial for this study, as it aimed to explore south african parents’ perceptions and decisions regarding communication modes for their dhh children, a topic where cultural, social and personal nuances might emerge organically. braun and clarke’s six-step process was followed: (1) transcription of the interview data and familiarisation with the data through repeated reading of interview transcripts, (2) data segmentation into meaningful units or codes, which are portions of the text that convey distinct ideas or concepts, that is, generating initial codes based on meaningful data segments, (3) codes grouped into broader themes that captured the essence of the participants’ responses, searching for themes among these codes, (4) reviewing the themes to ensure they accurately captured the data, (5) defining and naming themes to fully represent the essence of each and (6) producing the final report. in line with the approach suggested by vaismoradi et al. (2013), these themes were not predetermined but rather emerged inductively from the data. this allowed the researchers to capture the complexity and depth of the participants’ experiences and perceptions. this method was deemed appropriate given the complexity of the subject matter, where multiple perspectives and experiences needed to be understood in depth. additionally, this approach allowed for the capturing of both commonalities and differences in the participants’ narratives, making it ideal for the exploratory nature of this research. by utilising braun and clarke’s thematic analysis, the study ensured that the themes were data driven, providing a robust representation of parents’ lived experiences and decision-making processes without imposing preconceived categories. the final themes were then organised and described in detail, providing a rich and nuanced understanding of the participants’ perspectives on the communication choices for their dhh children. this methodical approach to thematic analysis ensured that the findings were grounded in the data, providing a trustworthy and credible interpretation of the participants’ experiences. this method, grounded in qualitative rigor, offers transparency in the analysis and contributes to the overall trustworthiness of the findings. the quantitative data were analysed using factor analysis, which allowed for the identification of two distinct groups or ‘clusters’ of participants based on their similar response patterns. the participants were divided into clusters according to the correlation matrix. this clustering process was facilitated through ken-q analysis, which groups participants according to pearson’s correlation coefficient and horst’s centroid method of analysis (du plessis 2019; klein 2022). the correlation matrix generated through this analysis provided a visual representation of how closely each participant’s responses correlated with those of others. participants who exhibited similar views were grouped into clusters, effectively highlighting patterns of agreement and disagreement within the sample. for instance, participants within the same cluster shared similar attitudes towards specific statements, while those in different clusters had diverging opinions. by analysing these clusters, the study was able to compare the statements that each group of participants agreed or disagreed with, shedding light on underlying trends and commonalities within the data. this approach also allowed for the identification of the most populated clusters and highlighted any statements that received unanimous agreement or disagreement across clusters, providing deeper insights into the participants’ collective attitudes and perceptions (akhtar-danesh et al. 2008; gale 2010). trustworthiness and rigour the study ensured confirmability, dependability and rigour through documentation, triangulation of data sources and participant expansion on survey responses (klein 2022; nielsen et al. 2020; nowell et al. 2017). reliability and validity content validity was established through a pilot study and face validity was maintained by using accessible language in the survey. q-sorting validity was upheld by employing user-friendly software for data analysis (akhtar-danesh et al. 2008; klein 2022). ethical considerations this study was approved by the human research ethics committee of the university of the witwatersrand (protocol number: sta_2023_15). the world medical association (wma) declaration of helsinki (2013) guided the ethical considerations for this study. results participants’ profile in line with the inclusion criteria, all participants were parents or legal guardians of dhh children. a large majority (78%) of the participants’ children did not attend schools for the dhh, with only 22% enrolled in them. of the total sample, 22% reported that their children do not use any hearing assistive devices, 33% reporting occasional use and only 45% reporting their children using these always. as far as communication mode used by the dhh children was concerned, a variety of modes of communication were reported, with speech and gestures being used by 35% of the participants, respectively, and sign language by only 12% of the sample, with the rest (18%) using a combination. the participants were divided into clusters according to the correlation matrix depicted in table 1. participants 2, 3 and 4 form one cluster, while p1, 5, 6, 7, 8 and 9 formed the other. the differing attitudes of the two clusters will be referred to when discussing the results of the study. the closer the number is to 100, the closer those respondents’ responses correlated with each other. table 1: correlation matrix of survey results (n = 9). exploring parents’ perceptions of the oral, signing and bilingual modes of communication although most participants (88%) agreed that ‘sign languages will be used more and more in the future’ all but one participant felt that a deaf child should always learn to speak whether they are capable (figure 1 and figure 2). figure 1: participants’ responses to the statement ‘sign languages will be used more and more in the future’ (n = 9). figure 2: participants’ responses to the statement ‘if a deaf child can learn to speak, they always should’ (n = 9). cluster 2 participants agreed that ‘sign languages allow a deaf child to communicate more freely’ (83%) and were more likely to agree that ‘sign languages help to preserve deaf culture’ (83%) (figure 3 and figure 4). figure 3: participants’ responses to the statement ‘sign languages allow a deaf child to communicate more freely’ (n = 9). figure 4: participants’ responses to the statement ‘sign languages help to preserve deaf culture’. most participants agreed with the statement (n = 9). participants in cluster 1 were all of the belief that dhh children can learn to speak as well as their hearing peers (figure 5 and figure 6). they also did not think that it is effective for a dhh child to learn a sign and spoken language at the same time (figure 7). as opposed to cluster 2 participants who were less likely to think that dhh children can learn how to speak as well as their hearing peers (only 33%). figure 5: participants’ responses to the statement ‘deaf or hard-of-hearing children cannot learn to speak as well as hearing children’ (n = 9). figure 6: participants’ responses to the statement ‘deaf or hard-of-hearing children can learn spoken language effectively’ (n = 9). figure 7: participants’ responses to the statement ‘a deaf or hard-of-hearing child should learn a sign and spoken language at the same time’ (n = 9). a notable distinction was in the participants’ perception of sign languages as valid languages. one of the most distinctive statements in the survey was ‘being able to use both a sign and spoken language can be compared to speaking both english and zulu’. all cluster 1 participants disagreed, while all cluster 2 participants agreed (figure 8). in addition, one of the cluster 1 participants remarked: ‘i don’t think sign language is a language truly. when you talk of language you should be able to speak and communicate verbally and not just with signs.’ (participant 2, parent, female 38) figure 8: participants’ responses to the statement ‘being able to use both a sign and spoken language can be compared to speaking both english and zulu’ (n = 9). investigating the influencing factors or motivators behind parents’ decisions concerning the modes of communication their child will use when it came to the influencing factors behind the decision of what mode of communication their child should use, two major themes emerged: (1) marginalisation and ostracism and (2) nature of disability. the most prominent theme, which had six sub-themes (parental advocacy and empowerment, resource availability and accessibility, cultural and social integration, identity and belonging, impact on family dynamics and long-term outcomes and future prospects), was that of marginalisation and ostracism. many participants did not feel that their child would have the necessary accommodations made for them if they were to opt for the signing route. this corroborates with the survey results that reflect that all but one participant (88%) agreed with the statement ‘there are not enough deaf schools in south africa where dhh children can learn and use sign language’ (figure 9). figure 9: participants’ responses to the statement ‘there are not enough deaf schools in south africa where deaf or hard-of-hearing children can learn and use sign language’ (n = 9). the following quotations under the six sub-themes highlighting the issue of ‘marginalisation and ostracism’: one sub-theme was ‘parental advocacy and empowerment’, where parents expressed a strong sense of responsibility in advocating for their child’s needs and accessing appropriate resources. this was closely linked to the sub-theme of ‘resource availability and accessibility’, as many parents described how the scarcity of resources – particularly for sign language – affected their decisions. parents often had to weigh the availability of professional support against their desired mode of communication. parental advocacy and empowerment ‘as a mom, i felt it was my job to make sure that my child had access to every possible opportunity, whether that meant fighting for resources at school or learning sign language as a family.’ (participant 1, parent, female 41) ‘we had to speak for our child … become his voice in a system that doesn’t always understand what he needs.’ (participant 9, parent, male 40) ‘generally, i think if they can afford to learn to speak english it would be good for them because most of the people that will deal with them, it’s not all of them that will necessarily understand their own language.’ (participant 3, guardian, female 41) resource availability and accessibility ‘we chose the oral mode mainly because the resources for sign language are so limited in our area … there are no schools for the deaf.’ (participant 3, guardian, female 41) ‘the lack of trained professionals who can support sign language was a major barrier for us.’ (participant 2, parent, female 38) ‘accessibility and availability of schools and trained people is a big deal. i mean, there’s not many schools that are available even for kids that have these different abilities never mind within a normal, mainstream school.’ (participant 6, parent, female 39) another sub-theme was ‘cultural and social integration’, which highlighted the pressures parents felt from their communities to choose spoken language as the primary mode of communication. this was in contrast to the sub-theme of ‘identity and belonging’, where parents discussed the importance of connecting their children to the deaf community and fostering a strong sense of deaf identity through the use of sign language. cultural and social integration ‘i think it’s a good thing to learn. i just think sign language is not even normalised in south africa in and of itself. even with parents and their children who are hard-of-hearing, it’s not a normalised habit. even if we train teachers and educators, there’s not a continued education for children in sign language but i think it is a great thing to develop.’ (participant 6, parent, female 39) ‘in our community, spoken language is seen as essential for success, so we felt pressured to choose oral communication.’ (participant 1, parent, female 41) ‘we wanted our child to be able to communicate with their hearing family members and friends, which influenced our decision towards oral communication.’ (participant 8, parent, female 42) identity and belonging ‘but for deaf children who are not multi-disabled i think it is very important to also learn spoken language. deaf people using only sign language are very cut off from society at large and cannot communicate well doing shopping et cetera, and cannot enter more or less all occupations. so they are more cut off from society.’ (participant 1, parent, female 41) ‘we didn’t want our child to feel isolated from the deaf community, so we made sure he learned sign language.’ (participant 3, guardian, female 41) ‘it’s important for us that our child embraces their deaf identity, and sign language is a big part of that.’ (participant 9, parent, male 40) the theme of ‘impact on family dynamics’ revealed how the decision to adopt a particular communication mode was not only about the child but also about what worked for the entire family. impact on family dynamics ‘learning sign language together as a family brought us closer and helped us better understand each other.’ (participant 2, parent, female 38) ‘the decision we made had to work for the entire family, not just for our child.’ (participant 4, guardian, female 38) finally, the theme of ‘long-term outcomes and future prospects’ reflected parents’ considerations of how their communication choices would affect their children’s opportunities in education, employment and broader social integration. long-term outcomes and future prospects ‘we thought about which mode of communication would offer the best future opportunities for our child, you know … whether in education or employment.’ (participant 6, parent, female 39) ‘we hope that by choosing oral communication, our child will have an easier time being part of the society as a whole … and our extended family.’ (participant 1, parent, female 41) the second theme was ‘nature of disability’. one of the participants whose child exclusively uses sign language, for example, cited the nature of his child’s disability as the reason behind choosing this mode of communication. perceptions of deafness as either a disability or difference, as well as medical versus social models of disability, emerged as sub-themes under this theme. perceptions of deafness as a disability versus difference ‘some people see our child’s deafness as a limitation, but we view it as just another way of experiencing the world.’ (participant 3, guardian, female 41) ‘we don’t see our child as disabled; we see him as differently-abled, and that influenced our decision to embrace sign language.’ (participant 6, parent, female 39) ‘being multi-disabled, [my child] could only learn to speak a few words, but took to sign language immediately, so that is her primary language.’ (participant 1, parent, female 41) medical versus social models of disability ‘the doctors kept pushing us towards cochlear implants, making it seem like deafness is something broken that needed to be fixed.’ (participant 4, guardian, female 38) ‘we felt that the focus should be on changing the environment …everything around us … to our child’s needs, rather than trying to ‘normalise’ their hearing.’ (participant 8, parent, female 42) discussion the study’s participants were parents or legal guardians of dhh children in south africa. the demographic data revealed several key insights into their experiences and perspectives regarding communication modes and educational settings for their children. the fact that a large majority (78%) of the participants’ children did not attend schools for the dhh suggests a significant proportion of dhh children are integrated into mainstream educational settings rather than specialised schools for the dhh in this sample. this might be for various reasons, including the lack of specialised schools for the dhh in the country. this limitation in access seems also to be possibly evident in the use of hearing assistive devices, where only 78% of participants’ children used hearing assistive devices, primarily hearing aids, although all would have benefited from them based on their hearing function. furthermore, the fact that only 45% used them consistently may also highlight potential challenges or limitations in access to and utilisation of these devices. a diversity of communication modes was found among the participants’ children. while speech and gestures were common (35% each), sign language was less prevalent (12%), with the combination of modes used by18% of the sample. this distribution reflects the varied approaches adopted by families in facilitating communication for their dhh children. this is similar to nichol’s (2020) study where a minority of the participants’ children used sign language. notably, all participants in this study reported that they themselves were hearing and communicated using speech, in line with the statistic that the vast majority of parents with dhh children are hearing and speaking (bradfield 2021). similar patterns were evident in chang’s (2017) study where most parents were hearing (76%) and thus opted for ci surgery for their child. the profile of this study is thus skewed towards parents whose children use the oral route of communication and use hearing assistive devices. the study delved into parents’ perceptions regarding oral, signing and bilingual communication modes for dhh children. two distinct clusters emerged based on the correlation matrix, reflecting differing attitudes and beliefs among participants. firstly, as far as sign language usage was concerned, cluster 2 participants were more supportive of sign language, perceiving it as facilitating freer communication and preserving deaf culture. in contrast, cluster 1 participants emphasised the importance of learning spoken language, with some scepticism about the efficacy of sign language. secondly, as far as spoken language acquisition was concerned, while most participants agreed that sign languages would gain prominence in the future, there was a strong consensus that dhh children should learn to speak if capable. cluster 1 participants believed dhh children can learn to speak effectively, whereas cluster 2 participants were less optimistic about this ability. current findings are congruent with available evidence indicating that the oral route is more commonly chosen among parents of dhh children (bradfield 2021; nichol 2020). the issue of the preservation of deaf culture is acknowledged by parents in this study as well as previous literature (bradfield 2021; chang 2017). most participants in this study, those constituting cluster 2, believed that sign language helps to preserve deaf culture but also that people with cis are still a part of the deaf community. parents in chang’s (2017) study mostly felt that their children were shunned or not accepted by the deaf community once they had cis. overall, parents across all contexts generally appear to be of the belief that spoken language opens more opportunities for their child in a hearing-centred world. these findings make it evident that parents within the south african context are concerned about the barriers associated with using sign language and this often motivates them to choose the oral mode of communication. there is also an issue surrounding the characterisation of sign language as mere gestures rather than a valid language, as expressed by a couple of participants in this study. overall, there may be a need to raise awareness about the value and use of sign language in south africa to prevent the marginalisation of those who sign. regarding the influencing factors or motivators behind communication mode decisions, the study uncovered two significant themes related to the factors influencing parents’ decisions for their dhh children. ‘marginalisation and ostracism’ is one of the themes identified where a prevalent concern among participants was the fear of marginalisation and a lack of accommodation if their child pursued sign language. this fear stemmed from perceptions of limited access to schools for the dhh and societal norms favouring spoken language. sub-themes with their accompanying quotes from participants highlighted these concerns, reflecting broader challenges faced by dhh individuals in accessing education and social inclusion within the south african context. while parents in nichol’s (2020) study were vocal about the ostracism endured by people who sign, there were differences with regard to their primary concerns compared to this study. participants in that study were primarily concerned with the child’s ability to communicate with their home community and communicate like the rest of the family. those participants were also less concerned about the child’s ability to lead a ‘normal’ life and fit in with their peers. on the other hand, parents in this study reported concerns with regard to the prejudice the child would face from the broader society and not just their home community. the issues of being cut off from society and discriminated against were also brought up more frequently by participants in this study. the six sub-themes under this theme reveal the complex interplay of factors that influence parental decisions regarding communication modes for dhh children. parental advocacy and empowerment emerge as crucial, with parents taking active roles to ensure their children’s access to opportunities, whether by advocating within the educational system or learning sign language themselves. however, the availability and accessibility of resources significantly shape these decisions, as some parents opt for oral communication because of the scarcity of support for sign language in the south african context. cultural and social integration pressures also weigh heavily, with parents choosing oral communication to align with community expectations and facilitate their child’s interaction with hearing family members. at the same time, concerns about identity and belonging lead other parents to prioritise sign language, recognising its importance in fostering a connection with the deaf community and embracing a deaf identity. the impact on family dynamics is also notable, with shared language learning fostering closer relationships, while decisions are made with consideration for the entire family’s needs. finally, long-term outcomes and future prospects guide parental choices, with a focus on which communication mode will best support their child’s educational and employment opportunities and their integration into broader society. these sub-themes underscore the multifaceted nature of parental decision-making in the context of dhh children’s communication options. ‘nature of disability’ is the second major theme that emerged. some participants cited the nature of their child’s disability as a decisive factor in choosing a communication mode. for instance, one participant mentioned their child’s multidisability as influencing the preference for sign language. this finding underscores the individualised nature of communication decisions based on a child’s specific needs and abilities. the two sub-themes under this theme highlight the contrasting perceptions of deafness as either a disability or a difference, which significantly influence parental decisions regarding communication methods for their dhh children. some parents reject the notion of deafness as a limitation, instead viewing it as a unique way of experiencing the world, which leads them to embrace sign language and other communication methods that affirm their child’s identity. this perspective aligns with the social model of disability (harvey 2008; shakespeare 2006), where the focus is on adapting the environment to meet the needs of the child, rather than attempting to ‘fix’ the child through medical interventions like cochlear implants (harvey 2008; power 2005). in contrast, the medical model, often advocated by healthcare professionals, emphasises the correction of deafness through technology, framing it as a condition to be remedied (kelly-corless 2024). these differing viewpoints reflect a broader debate between medical and social approaches to disability, with significant implications for how parents choose to support their child’s communication and integration into society. this study’s results are deeply intertwined with the socio-cultural and educational landscape of south africa, where access to inclusive education and specialised services for dhh individuals can vary significantly. the challenges highlighted, such as limited schools for the dhh availability, societal attitudes towards sign language where discrimination is a key barrier against parents’ willingness to choose the signing mode of communication and concerns about integration and inclusion, resonate with broader issues within the south african context. the need for schools for the dhh and sign language education in the south african context is also highlighted. this study sought to explore south african parents’ perceptions of the oral, signing and bilingual modes of communication for their dhh children. through a detailed examination of participants’ responses, the study successfully achieved its objectives by identifying the prevailing attitudes, beliefs and factors influencing parental decisions regarding communication modes. the results revealed a significant inclination towards oral communication, with a strong preference for spoken language development, even among parents who acknowledged the importance of sign language. the clustering of participants based on their responses provided a nuanced understanding of the diverse perspectives, particularly highlighting the tension between cultural preservation through sign language and the perceived practical advantages of oral communication. the study also uncovered the critical role of marginalisation and accessibility issues in shaping these decisions, thereby providing a comprehensive overview of the complexities parents face in choosing the most suitable communication mode for their children. by addressing these objectives, the study has contributed valuable insights into the discourse on dhh education and parental choice in the south african context. conclusion in conclusion, while this study provides valuable insights into parental perceptions and decision-making regarding communication modes for dhh children in south africa, it also highlights the need for continued research, policy advocacy and community engagement to create a more inclusive and supportive environment for dhh individuals and their families. the need to expand the exploration of communication methods beyond the primary focus on the dichotomy between cochlear implants and sign language provided in this study is acknowledged. to provide a more comprehensive understanding of the available options for parents of dhh children, future work will include a more detailed examination of bilingual approaches that integrate both spoken and sign languages. by incorporating this perspective, a holistic view that recognises the diversity of communication strategies will be offered, ultimately providing parents with a broader range of evidence-based options for their children’s communication development. current findings should be interpreted with the identified methodological limitations in mind. firstly, the study’s sample size was relatively small, comprising nine participants, which may limit the generalisability of the findings to a larger population of parents or legal guardians of dhh children in south africa. secondly, the study primarily focused on participants who were already engaged with the children’s communication centre or accessed through social media, potentially leading to a biased sample that may not fully represent the diversity of perspectives within the broader population. thirdly, as with any self-reporting study, there may be inherent biases in how participants perceive and report their experiences and beliefs, which could influence the validity of the results. to ensure academic rigour and transparency, the study employed several strategies to address and mitigate these limitations. initially, acknowledging the small sample size as a potential limitation, the study utilised in-depth qualitative methods to extract rich, detailed data from each participant. this approach allowed for a more nuanced understanding of the participants’ experiences and perceptions, compensating for the limited number of respondents. additionally, to counter the limitation of potential bias in participant selection, the study employed purposive sampling. this method ensured that participants were selected based on specific criteria relevant to the research question, thereby increasing the relevance and depth of the data collected. the use of thematic analysis in the qualitative component further strengthened the study’s rigour by systematically identifying and analysing patterns and themes across the data. this method, grounded in established frameworks (nowell et al. 2017), ensured that the analysis was both thorough and consistent. furthermore, the study’s reliance on triangulation – integrating quantitative factor analysis with qualitative thematic analysis – helped to cross-validate the findings. this approach not only provided a more comprehensive understanding of the data but also enhanced the credibility and robustness of the results. to address potential researcher bias, reflexivity was maintained throughout the research process, with the researchers continuously reflecting on their assumptions and influences to ensure that the analysis remained objective and grounded in the data. lastly, the study’s transparency was demonstrated through detailed documentation of the research process, including the data collection methods, analytical procedures and interpretation of results. by clearly outlining these steps, the study ensured that its findings could be scrutinised, replicated or built upon in future research, thus contributing to the field’s ongoing discourse. bearing the aforesaid in mind, the study raises some implications. firstly, the findings underscore the need for educational policies and initiatives that promote inclusive education and provide adequate resources and support for dhh children in both mainstream and specialised educational settings. secondly, there is a clear need for increased awareness and training among healthcare professionals, educators and the general public regarding the diverse communication needs of dhh children and the importance of accommodating these needs effectively. thirdly, addressing societal attitudes and biases towards sign language and deaf culture is essential for creating an inclusive and supportive environment that values linguistic diversity and promotes social inclusion for dhh individuals. therefore, there are several recommendations that can be made. conducting larger-scale studies with a more diverse participant pool can provide deeper insights into the complex factors influencing communication mode decisions for dhh children in south africa. additionally, there is a need to engage with deaf communities, advocacy groups and relevant stakeholders to co-create communication strategies and policies that are sensitive to cultural diversity and promote inclusion. furthermore, ongoing training and professional development opportunities for healthcare professionals, educators and support personnel to enhance their understanding of dhh communication needs and best practices are needed. lastly, advocating for policy changes and initiatives that prioritise access to specialised services, inclusive education, and linguistic rights for dhh individuals, including the recognition and promotion of sign language as valid and valuable form of communication is recommended. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.b. and k.k.-s. co-conceptualised the study. j.b. performed all data collection and conducted data capturing with k.k.-s. supervising. j.b. and k.k.-s. analysed and interpreted the data. both authors read and approved the final article. funding information this 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https://doi.org/10.1111/nhs.12048 abstract background methodology results discussion conclusion acknowledgements references appendix 1: information sheet and consent to participate in study. appendix 2: photo release form (subject informed consent). appendix 3: foto vrylating vorm. appendix 4: consent for publication. appendix 5: photovoice ethics: safety, impact, and obligation. appendix 6: whoqol-bref instrument. about you about the author(s) tonderai w. shumba discipline of public health medicine, university of kwazulu-natal, south africa indres moodley discipline of public health medicine, university of kwazulu-natal, south africa citation shumba, t.w. & moodley, i., 2018, ‘part 2: the feasibility of utilising photovoice method and the world health organization quality of life instrument in evaluating the community-based rehabilitation programme in namibia: a pilot study’, african journal of disability 7(0), a419. https://doi.org/10.4102/ajod.v7i0.419 original research part 2: the feasibility of utilising photovoice method and the world health organization quality of life instrument in evaluating the community-based rehabilitation programme in namibia: a pilot study tonderai w. shumba, indres moodley received: 08 aug. 2017; accepted: 17 aug. 2018; published: 01 nov. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: evaluation of community-based rehabilitation (cbr) programmes in namibia has been primarily quantitative, focusing mainly on outputs, including numbers of persons with disabilities served, referrals made and activities implemented. little or no evidence is available on experiences and quality of life of persons with disabilities, despite the cbr programme being operational for more than 20 years. the 2011 world report on disability recommended the use of appropriate tools to fill the research gap by integrating the experiences of persons with disabilities and their quality of life. objectives: the overall objective of the larger cohort study is to develop a monitoring and evaluation tool that can measure and integrate the experiences of persons with disabilities and their quality of life within the context of the cbr programme in namibia. method: an adapted photovoice process was conducted with six purposively selected participants over a period of 1 month. the world health organization community-based rehabilitation (who cbr) matrix was used to identify the themes and subthemes. participants were requested to complete the world health organization quality of life (abbreviated version) (whoqol-bref) instrument at the end of the photovoice process to determine their quality of life. results: administering the whoqol-bref instrument at the end of the photovoice process measured both the quality of life of persons with disabilities and at the same time indicated the convergence and divergence in the two data collection methods. the study demonstrated a stronger convergence than divergence of the two methods. a feasibility criterion was mapped for future studies. conclusion: this study demonstrated that photovoice is a flexible method that can be used with a variety of disabilities and has the potential of being combined with the whoqol-bref assessment form. a larger cohort study may consider implementing photovoice and whoqol-bref on multiple study sites and be able to compare results, considering geographical and demographic variables. the feasibility of utilising each method alone and in combination offered valuable insights on future conceptual framing of cbr programme evaluation. this conceptual framing will allow cbr practitioners to appreciate how these two methods contribute to a rigorous process of cbr programme evaluation. background community-based rehabilitation (cbr) is a strategy designed to improve service delivery, social integration and quality of life and to protect and promote the human rights of persons with disabilities (who 2011). community-based rehabilitation was introduced to africa in the early 1980s and was initiated in namibia in 1992 (ministry of health and social services 2013) and formally adopted in 1997 (government republic of namibia 1997). since then, cbr implementation and evaluations have been affected by the evolving global trends in models of disability. cbr has evolved from healthcare service delivery to community development (who, unesco & ilo 2004). the adoption of the united nations convention on the rights of persons with disabilities (uncrpd) in 2006 affirmed the need to uphold human rights by mandating member states to promote and protect the rights of persons with disabilities (un 2006). furthermore, the cbr guidelines (who et al. 2010) added a new rights-based approach with an emphasis on inclusion and active participation of persons with disabilities. as a result of the evolving concept of cbr, it has been implemented in various contexts thus affecting the global scope on cbr evaluations (m’kumbuzi & myezwa 2016). while the cbr programme has been now rolled out to all 14 regions in namibia, there are still districts where it is yet to be implemented. evaluation of cbr programmes has been quantitative, focusing mainly on outputs such as numbers of persons with disabilities served, referrals made and activities that are carried out (ministry of health and social services 2013). little or no evidence is available on experiences of persons with disabilities, despite the cbr programme being operational for more than 20 years. insights into experiences and understandings of those who are ‘exposed’ to cbr can best be obtained through qualitative methods. recently, shumba and moodley (2017a) in their assessment of the implementation of the cbr disability programmes identified the need for a qualitative evaluation tool that can effectively elicit the experiences of persons with disabilities on the cbr programme. the world health organization community-based rehabilitation (who cbr) guidelines (who et al. 2010) state that the main objective of cbr is to improve the quality of life of persons with disabilities. the measurement of quality of life becomes critical in providing an additional measure to corroborate the elicited experiences of persons with disabilities. this observation is supported by the 2011 world report on disability that recommended the use of appropriate tools to fill the research gap by integrating the experiences of persons with disabilities and their quality of life. under the aegis of article 32 of the uncrpd, persons with disabilities should be consulted in services in which they are involved (un 2006). similarly, madden et al. (2015) advocated for monitoring systems that are participatory and community owned to ensure programme quality and sustainability. photovoice is one method that challenges the established paradigms of representation by enabling vulnerable groups to effectively communicate their experiences and needs. photovoice was developed by wang and burris in 1997 to enable vulnerable people to express and reflect their experiences with the aid of photographs and to formulate concerns that can be communicated to implementers and policymakers. although photovoice has been used widely with persons with disabilities and other studies (hiv, tuberculosis, etc.) in africa, it has limitedly been used as a research method with persons with disabilities in southern africa (shumba & moodley 2017b). this is possibly attributed to lack of knowledge on the application of the method or limited value placed on monitoring and evaluation of disability programmes. thus, there is a gap in knowledge on the application of photovoice as a disability evaluation tool particularly with persons with disabilities participating in cbr programmes. this was reported in the scoping study conducted by shumba and moodley (2017b) that provided some insights on photovoice application for evaluation of cbr programmes. because photovoice does not directly measure quality of life, there is need for a complementary tool that can measure quality of life. one such tool is the world health organization quality of life instrument (whoqol-bref) which is an abbreviated version of the whoqol-100 and was developed to assess the ‘individual’s perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’ (world health organization 1998:1). the whoqol-bref instrument has been proposed to have uses in establishing baseline scores, identifying changes in quality of life, research and policy making (world health organization 1998). furthermore, the whoqol-bref instrument measures other aspects including sexual health that in most instances is not measured by other quality of life instruments. evaluating the effects of cbr programme on quality of life of persons with disabilities can further help to prioritise areas for more effective use of resources, especially in resource-limited settings including namibia. studies on the evaluation of cbr programmes (grandisson, hébert & thibeault 2014) advocate for mixed methods and participatory tools to empower persons with disabilities to effectively communicate their needs to programme implementers and policymakers. based on the above background, it was therefore important to assess the feasibility of utilising photovoice in conjunction with whoqol-bref instrument before wider application. methodology objectives objective of the main study the overall objective of the larger cohort study is to develop a monitoring and evaluation tool that can measure and integrate the experiences of persons with disabilities and their quality of life within the context of the cbr programme in namibia. this pilot study will be used to identify any challenges that may need to be addressed in a larger cohort study. specific objectives of the pilot study to assess the feasibility of the processes that are key to implementing photovoice in conjunction with the whoqol-bref instrument. to identify potential human and data management problems. to assess the ethical issues, trustworthiness and responsiveness of photovoice and the whoqol-bref assessment. feasibility criteria the assessment of the outcomes of the feasibility success was based on the objectives. four broad classifications (process, resources, management and scientific) (van teijlingen et al. 2001) were adapted and utilised to map the outcomes of the pilot study (table 1). table 1: feasibility criteria. study site the pilot study was conducted in the rural settlement of groot aub in the khomas region which is located 45 kilometres from the capital city windhoek and is easily accessible for data collection. this site was chosen as it has a similar composition to the ones to be chosen for the larger cohort study with respect to variables such as the types of disability, geographic distribution of participants, geographic terrain and cultural diversity. the groot aub cbr programme was initiated in 2015 and the main activities include identification and screening of persons with disabilities, home visits and referral for services. the cbr programme consists of 15 cbr volunteers who were trained utilising the who cbr matrix (who et al. 2010). participants the population of this pilot study included all persons with disabilities and their caregivers who are participating in, or are beneficiaries of, the cbr programme in groot aub. the inclusion of caregivers as participants was based on the scoping review (shumba & moodley 2017b) that revealed that caregivers can also be utilised to investigate life experiences of persons with disabilities particularly those with multiple and severe disabilities. purposive sampling utilising a research assistant was used to identify eight participants. these participants had the following characteristics: 18 years or older, involved with the cbr programme for at least 1 year and able to read and speak basic english. persons with intellectual disabilities or mental illness or emotional disorders were excluded. the research assistant chosen was the senior community liason officer who is the regional community liason officer of the khomas region under the office of the presidency, department of disability affairs. initially 15 participants were invited to participate in the photovoice process, but only eight met the inclusion criteria. of these eight participants, six completed the study. one of the six participants opted out from group interviewing and requested self-representation of concerns with the local councillor. the participant needed privacy and confidentiality of self-expression for fear of retribution. intervention methods intervention methods included two phases, namely the implementation of the photovoice method and the administration of the whoqol-bref assessment. phase 1: photovoice method training: a photovoice training was conducted with the eight participants prior to data collection. this half-day training included the following aspects: photovoice process, group objectives, informed consent to participate, how to use the camera, the basics on how to take photographs, potential subject matter and themes of photographs and ethical considerations when photographing human subjects. this training also served as a platform for participants to introduce themselves and get to know each other. the researcher utilised a structured technique as suggested by wang (1999) to guide the participants to identify aspects relevant to their cbr experience. the structured photovoice technique is known by an acronym called ‘showed’ as explained below: showed what do we see here? what is really happening here? how does this relate to our lives? why does this situation, concern or strength exist? what can we do about it? (wang 1999) this technique enabled and empowered the participants to capture relevant photographs and critically analyse content regarding their experiences. furthermore, the researcher explained that the technique would assist in codifying and selecting themes and subthemes during the follow-up individual interviews. for data collection, each participant was then issued with the following materials: one disposable camera, consent forms for the photographed subjects to sign verifying consent to be photographed as well as to publish the photographs. data collection: this part of the project involved taking of photographs by the participants, collection of the cameras and signed consent forms, development of photographs and reflection and was completed in 1 week. participants were allowed 6 days to take their photographs and to return their cameras and the subject release forms to the research assistant who then sent them to the researcher. about midway through the time period, the research assistant telephonically reminded the participants of their deadlines and offered encouragement and advice where necessary. after 6 days, the researcher received the cameras and then had the photographs processed which took 1 day. each participant’s set of photographs are saved and coded on separate compact discs (cds). this master set of cds was retained in safe-keeping by the researcher. data analyses: during week two, the researcher and research assistant returned with the processed photographs to groot aub. participants were requested to come to the councillor’s office at selected times over a period of 3 days for individual interviews, selection of ‘best’ photographs, codification and feedback on the photography assignment. the researcher requested each participant to contextualise each photograph using the ‘showed’ technique (wang 1999). each participant was allocated time for individual selection of the ‘best’ 10 photographs to describe their experiences regarding the groot aub cbr programme. the researcher requested each participant to categorise photographs with similar meaning together and identify a theme. those belonging to one theme, but of a subcategory were assigned to a subtheme. participants were then requested to give feedback on the challenges and achievements they had during the photovoice process. a trusting or safe atmosphere allowed participants to express themselves freely. participants also shared thoughts on other photographs they wished they could have taken, but did not. on completion of individual feedback sessions, participants were invited to a group discussion to share their selected photographs with the other participants. the aim of the group discussion was to select the final photographs that best represented a collective story for the cbr programme. in light of the principle of self-determination and self-representation, participants were informed that the group discussion was voluntary and they had the option not to share their stories in a larger group. earlier it is stated that one participant declined. before the group discussion, participants were encouraged to circulate through the room to view and reflect on all the photographs that were displayed and to talk with other participants about their experience of taking and selecting photographs. simultaneously, the researcher circulated through the room to communicate with participants and ask probing questions, taking field notes. the researcher then used an lcd projector to display the selected photographs of each participant. each participant was allocated 20 min to present their findings and instructed to link specific pictures with each of their identified themes. the other participants were requested to refrain from asking questions during this process; they could however make a note of their questions and their own related stories to share in the final discussions. group coding was done through full group discussion to develop collective themes. at this stage, all participants could share their individual and collective experiences as they related to specific photographs, revising the underlying issues and themes. the researcher asked probing questions to guide the analysis of the data. the researcher facilitated the process of grouping the themes and subthemes utilising the who cbr matrix (who et al. 2010) as a conceptual framework. participants took ownership and actively engaged in the discussions and the thematic analysis. final themes and subthemes were then identified and photographs to present these themes were collectively agreed upon. the researcher deemed the data saturated when no new statements, regarding the meaning of the photographs, were made and all the participants reached an agreement on what was discussed. the researcher recorded the discussion and took field notes of participants’ responses. the discussions and the workshop were closed with some discussion questions: 1) what is the best way to present the findings? do you prefer a photo gallery or a poster release or presentation?, 2) can photovoice be implemented on a larger scale in other cbr programmes around the country? and 3) suggest improvements to the photovoice process. on completion of the group discussion, participants were invited to share their experiences and photographs either by preparing a photo gallery or a poster presentation. participants were informed that this was voluntary, and they had the right to refuse and represent themselves individually. however, the power of combined effort with one voice was emphasised. as a result of limited funds and time to organise a photo gallery, the consensus of the group was to produce a poster with the exception of one participant who requested an individual meeting or consultation with the local councillor. each participant was then provided with a cd with all photographs and hard copies of the photographs to distribute to the subjects they used as a token of appreciation. the participants were encouraged to develop a work plan in cooperation with the cbr committee to tackle some of the issues of concern with assistance from the research assistant. phase 2: world health organization quality of life-bref assessment orientation of the world health organization quality of life instrument: upon completion of the photovoice process, the researcher invited all participants to complete the whoqol-bref instrument (appendix 6). the researcher gave a brief overview of the whoqol-bref instrument. furthermore, the researcher explained that the purpose of completion of the whoqol-bref instrument was to provide preliminary feedback on participants’ and research assistant’s understanding of whoqol-bref instrument, human and data management problems, resource implications and the feasibility of combining the whoqol-bref instrument and the photovoice method. data collection: the participants were requested to complete the whoqol-bref assessment based on their life experiences during the past two years. because the main languages for khomas region are english and afrikaans, the researcher administered the internationally translated english and afrikaans versions of the whoqol-bref instrument. the researcher supervised the administration of the whoqol-bref and offered clarity to participants when necessary. data analyses: data for this study were manually calculated following the steps and formulas stipulated by whoqol-bref instructions manual (whoqol-bref group 1996). manual calculations for each participant are shown on page 1 of the whoqol-bref instructions manual (appendix 1). converting the domain scores to transformed scores (comparable with whoqol-bref-100 [4–20 scale] and [0–100 scale]) is shown in table 4 on page 11 of the whoqol-bref instructions manual (whoqol-bref group 1996). trustworthiness trustworthiness was ensured using lincoln and guba’s strategies for the qualitative approach including credibility, transferability, dependability and confirmability (lincoln & guba 1985). credibility was assured by prolonged engagement in photography assignment until the scope of data is adequately covered and data saturation of experiences of participants on the cbr programme was obtained; referential adequacy through the use of cameras and field notes, triangulation through engagement in individual interviewing, group interviewing and photography, member checks on participants’ responses and peer debriefing of themes with research assistant and second author were also applied. purposive sampling and dense descriptions ensured transferability. photographs, written field notes, methodological notes and reflexivity ensured dependability and confirmability. ethical considerations ethics approval was obtained from the human sciences ethics research committee of the university of kwazulu-natal (reference no: hss/0646/015d) and the ministry of health and social services in namibia (17/3/3). a full disclosure of the purpose of the pilot study was completed including the definition of a pilot study, the objectives of the larger cohort study, the objectives of the pilot study and the criteria for success of feasibility (appendix 1). furthermore, the researcher trained the participants to request consent from subjects to be photographed and to publish the photographs for use in conferences, seminars, journals or books (appendix 2, 3 and 4). noting the ethical considerations of the photovoice method, the participants were trained on the key concerns and their expected practice during the photovoice process (appendix 5). results participants characteristics of the six participants that were included five were persons with disabilities and one was a caregiver to persons with disability. the characteristics of participants are shown in table 2. table 2: participant characteristics. baseline results photovoice baseline results a number of key themes and subthemes were elicited from experiences of the participants using the photovoice methods. the final themes and subthemes collectively represent the experiences of the participants regarding the cbr programme. it is important to note that although the themes were relevant across the participants, individual differences may still be important depending on the emphasis each individual placed on each theme. the themes and subthemes with accompanying photographs are discussed below. key theme 1: secure livelihood subtheme 1: self-employment: notwithstanding the stigma that persons with disabilities are not capable or productive, it was reported that some per sons with disabilities are setting up viable income-generating projects (figure 1). figure 1: need for start-up capital for projects. person with visual impairment who owns a chicken farming project. subtheme 2: social protection: the cbr programme has been assisting persons with disabilities to access disability grants, but some recipients of the grants are not utilisi ng the funds well or are experiencing exploitation by others (figure 2). however, the disability grant is not adequate for some persons with multiple disabilities or the elderly with disabilities, as in some cases they need funds to pay their personal assi stants and other supplies and materials specific to their disability (figure 3). figure 2: advocacy for disability grants. person with mental illness supported by community-based rehabilitation programme to obtain disability grant. figure 3: personal assistance required for persons with multiple and severe disabilities. person with disability benefitting from the community-based rehabilitation programme through provision of cleaning and cooking support. key theme 2: health services subtheme 1: water and sanitation: a majority of the participants (4) reported challenges of not having adequate toilets, to the extent that they u se buckets as toilets (figure 4). furthermore, access to clean water is also a challenge in groot aub, exposing persons with disabilities to risks from using water from unsafe sources (figure 5). figure 4: no toilet at home. bucket serving as a toilet for an 86-year-old woman. figure 5: risky and unhygienic water sources. person with disability fetching water from an unprotected well. subtheme 2: assistive devices: there is a critical shortage of wheelchairs creating a situation in which persons with disabilities are receiving donated wheelchairs which do not meet their specialised needs and measurements (figure 6). although cbr is being recognised as a vehicle to assist persons with disabilitie s to access wheelchairs, there is still a lack of expertise in measuring and providing wheelchairs with the required specifications. recipients of wheelchairs need to be measured by a qualified occupational therapist or medical rehabilitation worker to pre vent further musculoskeletal and neurological complications. figure 6: inappropriate wheelchair size can cause back pain. cbr programme advocating for a woman with stroke in need of a wheelchair of the right size. subtheme 3: rehabilitation: five participants reported challenges with access to rehabilitation services. figure 7 depicts comments of one of these participants. figure 7: rehabilitation in mobility, braille, money counting and household duties critical for persons with visual impairments. woman with visual impairment in need of rehabilitation services. key theme 3: accessibility subtheme 1: physical accessibility: physical accessibility was noted as one of the major challenges facing persons with disabilities in groot aub with some household reporting that toilets were not accessible to wheelchairs (figure 8). however, some toilet s constructed have elements of accessibility as a result of the efforts of cbr volunteers, but are still not fully accessible, as indicated by the height of the seat in the photograph (figure 9). figure 8: need for physical accessibility to toilets. toilet was built for person with a disability, but accessibility to a wheelchair was not considered. figure 9: community knowledge gap on required door width of toilets. toilet with accessible toilet seat but inaccessible to wheelchair. physical accessibility to buildings is also a problem at public services including schools, clinic and police station (figure 10). correspondingly, a positive experience regarding physical accessibility to public buildings was recorded (figure 11). figure 10: inaccessible public buildings. need for accessible toilet at local clinic. figure 11: leading by example. constituency councillor’s office with proper physical accessibility. subtheme 2: information accessibility: most persons with disabiliti es, particularly those with visual impairment (figure 7) and the deaf (figure 12) face challenges in accessing information. user-sensitive and friendly modes of communication need to be considered. figure 12: advocacy for sign language training for family and community. deaf child with communication challenges with family and community. whoqol-bref instrument baseline results world health organization quality of life domain raw scores and transformed scores: the whoqol-bref instrument was administered to the six participants. the results of participants’ responses regarding quality of life scores determined by the four whoqol-bref instrument domains are shown in table 3 and integration of results of photovoice method and whoqol-bref instrument per participant are shown in table 4. table 3: participants’ world health organization quality of life transformed scores on scale 0–100. table 4: combined participants` and world health organization quality of life transformed scores and photovoice responses. convergence and divergence of photovoice and world health organization quality of life responses table 4 depicts the relevant information drawn from integrating the photovoice responses and the whoqol-bref instrument scores. for example convergence is shown with p1 (participant 1) who had low scores on the environmental and physical health domain and also expressed challenges with lack of water to wash hands at local clinic as well as poor accessibility to toilets. further divergence is shown with p2 (participant 2) who had a high score on physical health, yet the participant expressed dissatisfaction that she has not yet received proper training on using a white cane, reading braille, counting money and basic home duties since she became visually impaired. feasibility outcomes and critical issues to consider in main study the overall outcomes were drawn with reference to the feasibility objectives and criteria of the pilot study. the lessons learnt and proposed modifications for the main study are outlined in table 5. table 5: feasibility outcomes and proposed modifications. discussion feasibility of the processes that are key to implementing photovoice and world health organization quality of life instrument although the scoping review (shumba & moodley 2017b) demonstrated that caregivers and siblings of persons with disabilities can be included in determining experiences, this study demonstrated that including caregivers and persons with disabilities can affect the outcomes, especially with respect to experiences elicited and measurement of their respective qualities of life using the whoqol-bref instrument. caregivers and persons with disabilities have different experiences posing challenges in equating their assessments related to quality of life. furthermore, caregivers introduced issues that are more important to them than persons with disabilities to whom they provide assistance. the selection of research assistant is key in ensuring quality purposive sampling, competence with local language and retention of participants. in this pilot study, the research assistant was a senior community liaison officer who had only 1 year experience working with the groot aub cbr programme. this created challenges with purposive sampling as the research team depended heavily on the local persons with disabilities to identify participants. thus, some of the key attributes in selecting the research assistant in main study are: at least 3 years of cbr experience, at least 2 years working in cbr programme of that region, should be able to speak a local language of that area and be well versed with local culture and basic sign language skills. furthermore, the pilot study excluded persons with hearing impairment as none from the research team had basic sign language skills. persons with hearing impairment may be good with the photography component, but it may be difficult to engage them in a critical discussion (jurkowski 2008) as they require sign language interpretation. another group that this pilot study excluded included persons with intellectual and severe disabilities as a result of the extensive assessments needed and the uncertainty of ensuring that their interest and reasonable accommodation are genuinely taken into account (ware 2004). participants had challenges getting signatures and consent for taking photographs of human beings as most of the participants and subjects could not read and write as indicated in other studies (akkerman et al. 2014). consent forms in most cases are written in higher language required by review boards, which may be difficult for participants to understand (lennox et al. 2005). the researcher translated and explained the consent forms for subjects to be photographed. furthermore, the researcher recommended the participants to acquire consent by using an ‘x’ from the subjects to be photographed or their caregivers as an indication of signature and then the researcher or research assistant then made follow-ups of these subjects to confirm they gave consent. the ‘showed’ technique suggested by wang in 1999 was not successful with the pilot study as most participants indicated that it was rigid and provided only limited interpretation and exploration of their experiences. in similar studies, mcintyre (2003) also reported that the ‘showed’ technique had challenges in limiting the participants’ interpretation of their photographs. mcintyre suggested the use of photographer’s instinct in selecting photographs. these photographs are then interpreted and analysed based on personal questions. the researcher then adopted the approach by mcintyre and utilised personal questions. furthermore, participants were not requested to document their experiences on paper as most participants were not articulate enough to explain clearly their experiences let alone write them concisely. the main modification of the original photovoice process that was piloted was replacement of collective group discussion with one-on-one interviews in the photovoice analysis. this study revealed that one-on-one interviews with persons with disabilities provided confidentiality allowing participants to express themselves freely without influence from others and preventing the perspectives of participants from being shaped by others (jurkowski 2008). furthermore, it provides a more personal setting that facilitates sharing of deeper thoughts with the result being richer interview data (newman 2010). also, individual interviewing allowed the researcher to visit each participant’s home and this alleviated the issue of transportation, as most of the participants had mobility or transportation challenges. time projection and anticipated resource problems to ensure success of the main study, it was key to note the process time for the photography assignment, individual interviewing and to establish the time needed to fill out the whoqol-bref instrument. although duration of the photovoice method varies according to the objectives of the project, it is important to note that photovoice is more time consuming than other traditional research as it requires developing relationships and trust with participants (jurkowski 2008). to this end, the researcher should invest a reasonable amount of time and be patient with participants. this study establishes that cameras should be processed immediately after the photography assignment and interviewing should commence as soon as possible so that participants can recall why they took the photo. the whoqol-bref instrument indicated a considerable amount of time required to complete it. thus, it is ideal to take a short break in between photovoice interviewing and filling in of whoqol-bref instrument to allow participants to refresh. photovoice can be used with any disability type provided reasonable accommodation is provided (shumba & moodley 2017b). the anticipated resource problems to cater for reasonable accommodation of selected participants include sourcing sign language interpreters and identifying the sourcing and cost of braille or large print of whoqol-bref instruments. additional costs to be noted include type of camera to use (digital or disposable-film camera), contingency cameras in case participant camera is lost or broken and distance and transport cost to reach study site. the researcher learnt that it is advisable to actively engage participants throughout the project to increase retention and to avail airtime for mobile phone use to the group leader of participants for constant communication with researcher and research assistant. furthermore, to help ensure commitment, participants could be given incentives including t-shirts or hats during their photography assignment and certificates of completion at the end of project. potential human and data management problems final stories, themes and theories in photovoice are determined by saturation of data. however, reaching data saturation in the photovoice process can be attained in different ways. it is suggested that participants should be given an opportunity to comment on all photographs that they had taken as limiting the participants to selecting best photographs can hinder the collection and analysis of a wide range of issues (newman 2010). on the other hand, participants can be given a specified or maximum number of photographs to take in a given period. this allows participants to be critical or selective on which photographs to take. for this pilot study, participants were given disposable cameras (27 exposures film) thus limiting the number of photographs instead of digital cameras, which allow for taking more photographs. additionally, participants should be trained on photographic techniques to improve picture quality. participants were allowed one round of photography assignment and requested to comment on their photographs that best describe their experiences. this was an effective approach as it allowed participants to be critical on issues they photographed and saved time on interviewing and resources needed to process the photographs. however, the researcher noted that participants could be given more than one round of photography assignment. giving participants more than one round of photography assignment can afford them the opportunity to reflect on their issues and refine their findings. furthermore, it can allow for saturation when both the researcher and participant can agree that there are no new issues emerging. the study included the category ‘photographs not taken’ (i.e. photographs participants thought of taking, but failed to, because of other reasons) (lassetter, mandleco & roper 2007) in the feedback session and this produced rich data. one main reason that some participants failed to take some photographs was lack of transport to take photographs of public places where they receive services. thus, one of the recommendations for the main study is to provide transport arrangements to sites of photography as per participants’ request. the original conceptualisation of photovoice process by wang and burris (1997) allows for group selection of final themes before organising a community gallery. however, shumba and moodley (2017b) argued that participants should be given the flexibility to accept or decline proceeding further with the photovoice process after taking photographs. this pilot study gave participants an opportunity to accept or decline the offer to participate in a final group discussion and photo gallery. one participant declined citing confidentiality issues and fear of being victimised by the authorities and family members. persons with disabilities often lack self-esteem and confidence in representing themselves in a public platform. photovoice potentially generates a lot of data, and thus it is important to decide on storage of data and disposal. several issues need to be taken into account, including: awareness of data protection legislation, secure storage (encryption, lockable locker), awareness of security standards for online or cloud data collection and storage, publication of data and disposal of data (european commission 2009). when disseminating research findings, it is critical to observe ethical principles including consent for publication of findings. in this pilot study, names of participants and subjects were not used and their faces on photographs were not shown. furthermore, participants and subjects were asked for consent to publish the photographs in a community gallery, posters, conferences, journals and books. trustworthiness and response to photovoice and world health organization quality of life assessment to determine trustworthiness and data saturation, two or more photography assignments and individual interviews are ideal. however, despite photovoice enabling participants to mitigate communication problems, some of the participants had limited vocabulary and limited articulations skills to explore their experiences and this raised queries on the correctness or accuracy of interpretations of some photographs. in some instances, there was a discrepancy between what the photograph appears to identify and what the participant explained in the interview. another issue that is critical to the photovoice process is sample size. the sample of 6–10 was deemed ideal (wang & burris 1997). a scoping study (shumba & moodley 2017b) reviewed sample sizes from as small as 1 participant to 82 participants. this indicates that photovoice can be used with a range of sample sizes. however, wang (1999) suggested a group of 6–10 participants as an ideal size for the photovoice method. such a sample size is considered large enough to offer in-depth experiences and ideas, yet also allows enough time for each participant to contribute in a meaningful way. in addition, groups of this size are small enough so that members are able to feel safe in sharing experiences and taking part in discussions (palibroda et al. 2009). the current study used a sample size of eight, but only six participants completed the study. the photovoice process of this study lasted 2 weeks. duration of photovoice process is determined by data saturation and more than one photovoice assignment can allow for saturation (shumba & moodley 2017b). the main study can focus on not only establishing baseline quality of study but also consider longitudinally measuring change in quality of life. the whoqol-bref group (whoqol-bref group 1996) proposed some uses of whoqol-bref instrument including establishing baseline scores in a range of areas, determining changes in quality of life over the course of interventions, research and policymaking. other uses that can be proposed for the main study are determining changes in quality of life at impact evaluation intervals and providing evidence for policy changes (whoqol-bref group 1996). although the whoqol-bref instrument offers a generic measurement on quality of life, who developed an additional module to the whoqol-bref called ‘whoqol-dis’ to measure specific aspects on quality of life of persons with physical and intellectual disabilities. bredemeier et al. (2014) stated that the whoqol-dis is a measurement option for quality of life and thus recommended joint administration with the whoqol-bref instrument. to this end, the main study can potentially jointly administer the whoqol-bref and whoqol-dis instruments to gain both a generic and an in-depth understanding of the quality of life of persons with disabilities. overall evidence of feasibility this study demonstrated that photovoice is a flexible method that can be used with a variety of disabilities and has the potential of being combined with the whoqol-bref instrument. furthermore, there is need to provide continuous support during the photovoice process and in completing the whoqol-bref instrument. photovoice allowed most participants who were not confident to verbally communicate to meaningfully participate in the study. administering the whoqol-bref instrument at the end of the photovoice process can measure both the quality of life of persons with disabilities and indicate the convergence and divergence in the two data collection methods as shown in table 4. the study demonstrated a stronger convergence than divergence of the two methods (table 4). matching the photovoice responses to the scoring on whoqol-bref instrument consistently identified issues that were important to persons with disabilities. furthermore, integrating the two methods provided an adequate representation of the concerns and issues of persons with disabilities regarding the cbr programme. however, divergence of outcomes of photovoice and whoqol-bref instrument indicates that caution should be taken when combining both methods because of the diverse nature of persons with disabilities. the participants were requested to identify issues related to all the five components of the who cbr matrix (health, education, livelihood, social relationship and empowerment). there is a potential to explore in-depth issues when the methods are combined to focus on a specific component, for example, health. when there is a specific activity to focus on, the combination is likely to produce in-depth rich data. conclusion the findings from this study offer insights and considerations that can potentially be utilised in future large scale studies. the study identified critical issues related to the process of using the photovoice process with persons with disabilities and administering whoqol-bref instrument on a large scale including ethical considerations, human and financial resource issues, time forecast, trustworthiness and data management. furthermore, the study demonstrated the potential of combining photovoice method and whoqol-bref questionnaire. however, the combination of these methods should be made cautiously given the diverse nature of disability. noteworthy is that the ‘formal’ whoqol-bref instrument identified complex issues related to quality of life and the ‘informal’ photovoice method brings to light concrete issues related to everyday life that are usually left out by researchers and discussed less with family members and caregivers. a range of good outcomes that arose from integration of photovoice responses and whoqol-bref instrument score consistently depicted issues that were important to participants. the feasibility of utilising each method alone and in combination offered valuable insights on future conceptual framing of cbr programme evaluation. this conceptual framing will allow cbr practitioners to appreciate how these two methods contribute to a rigorous process of cbr programme evaluation. the lessons learnt in this pilot study will increase awareness on the potential pitfalls and optimise the use of photovoice and the whoqol-bref instrument. a larger cohort study may consider implementing photovoice and both whoqol-bref instrument and whoqol-dis on multiple study sites and be able to compare results, considering geographical or demographic variables. future research may also consider further investigation and evaluation of the use of photovoice as a disability research tool and whoqol-bref instrument with reference to the who cbr matrix (who et al. 2010) and its potential use in cbr monitoring and evaluation. gee et al. (2000) argued that quality of life assessments are critical in decision-making and resource allocations for programme interventions. acknowledgements the authors would like to thank the participants for availing their time and officials of the department of disability affairs, office of the presidency for assisting with data collection. furthermore, the authors would also like to thank mr david hughes, a disability consultant in namibia, for his invaluable contributions as well as the participants drawn from various government ministries and agencies. this project was funded by the university of kwazulu-natal, discipline of public health medicine, school of nursing and public health. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article authors’ contributions t.w.s. was the project leader responsible for project design, data collection and preparation of the final manuscript. 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https://doi.org/10.1089/jwh.1999.8.185 ware, j., 2004, ‘ascertaining the views of people with profound and multiple learning disabilities’, british journal of learning disabilities 32, 204–207. https://doi.org/10.1111/j.1468-3156.2004.00316.x who., unesco., ilo & iddc, 2004, joint position paper on community based rehabilitation a strategy for rehabilitation, equalization of opportunities, poverty reduction and social inclusion of people with disabilities. [online], viewed 18 june 2018, from http://www.who.int/disabilities/publications/care/en/index.html who, unesco, ilo & iddc, 2010, community based rehabilitation guidelines introductory booklet, world health organisation, geneva. who & world bank, 2011, world report on disability, world health organisation, geneva. whoqol-bref group, 1995, ‘the world health organization quality of life assessment: position paper from the world health organization’, social science and medicine 41, 1403–1409. https://doi.org/10.1016/0277-9536(95)00112-k whoqol-bref group, 1996, who-bref-introduction, administration, scoring and version of the assessment, world health organization, geneva. world health organization, 1998, ‘programme on mental health. whoqol-bref user manual’, in division of mental health and prevention of substance abuse (ed.), world health organization, geneva. appendix 1: information sheet and consent to participate in study. date: good day my name is tonderai washington shumba with the details listed below: academic affiliation: university of kwazulu-natal college of health sciences south africa degree programme: doctor of philosophy in public health medicine (student) mobile: 0813631898 email: shumbatw@gmail.com you are being invited to consider participating in a phd study that involves developing a monitoring and evaluation tool that can be used to elicit the experiences of people with disabilities on the community based rehabilitation programme (cbr) in namibia and to improve their quality of care. the main aim of this study is to improve the quality of life of people with disabilities by monitoring the care and quality of services provided. the study will involve 4 phases of which you are being invited for the pilot phase (third phase) of the study. the study is expected to enroll a total of 36 participants over different phases. for this third phase there will be a total of 8 participants from khomas region. phase 1 and 4 will have 12 and 16 participants respectively. phase 1 and 4 participants will be drawn from the following regions: khomas, hardap and otjozondjupa. the purpose of this information sheet and consent form is to provide the information needed to help you decide whether or not to participate in this research project. included is information on the importance and benefits of the research, possible risks, and your rights as a volunteer participant. when all your questions have been answered, you can decide if you want to be in the study or not. this process is called ‘informed consent’. please read the form carefully and feel free to ask any questions you may have. purpose of the pilot research project the purpose of the pilot phase in which you are invited is to pilot a photovoice tool for monitoring and evaluating experiences of people with disabilities on the cbr programme in namibia and assess improvements in quality of life using a world health organization quality of life questionnaire. the photovoice process will be used to gather information. the purpose of taking photos, and asking for an explanation of the photo, is to help you tell your story with your own pictures. there are three goals of this research – to enable you as a person with a physical disability to record and reflect on disability issues which have /have not been addressed by your community based rehabilitation programme. to promote discussion about important disability issues through taking photographs and talking about them. to engage policymakers about disability issues that are important to you as a person with physical disability. it is hoped that the results of this pilot research will help us adapt tools that can assist us to better understand issues surrounding community based rehabilitation as a programme. this information may be of assistance in improving the quality of life for persons with disabilities. procedures if you choose to be in this study, both data collection and analysis will last for 1 month as described below: you will be asked to attend a one day training workshop about photovoice method, use of cameras, and the responsibility of taking photographs. in the workshop we will discuss ethics, ways of seeing photographs, and the idea of giving back photographs to the community members as a way of expressing appreciation and respect. during the workshop you will be asked questions like ‘what is an acceptable way to approach someone to take their photograph?’, ‘should pictures be taken of people without their knowledge?’, ‘what kind of responsibility does carrying a camera involve?’, ‘what types of photographs do you think are private or personal?’ and ‘to whom might you wish to give photographs, and what might be the implications?’. you will be provided with a camera and film for the research. the researcher will develop your pictures and provide you with copies for discussions. the best photographs will be selected for the research project. the photovoice process will ask that you spend 1 month taking photos with a digital camera and then deliver the cameras back to us every week. we will develop your photos and return them to you. we will then ask you to select and reflect in writing on six of your pictures that you believe are most meaningful in their description of the work of community based rehabilitation and that you would want to share with a broader audience. you will return the photos and reflections to us. you will then participate in a one day learning workshop at the end of each week. this will engage you and other participants in the photovoice process through a facilitated discussion and analysis. during this 1-day session, we may be audio taping and video recording the conversations and taking field notes. at any time, you can request that the recorders be turned off. the recordings and transcripts will be kept in a locked file cabinet, and your identity (if you choose not to be identified by name) will not be disclosed (we will use ‘site participant’). potential risks, stresses, or discomfort some people may feel taking pictures is an invasion of their privacy. some people feel a little self-conscious when they are photographed. some people may not want to have their photo taken. no photographs identifying specific individuals will be released without a separate written consent of the photographer and the identified individuals. no picture is worth taking if it makes someone feel uncomfortable. because of the small number of participants (8), identity might be discerned; therefore, only limited confidentiality can be guaranteed. however, your privacy will be protected to the maximum extent allowable by law. please know that participation in this project is voluntary and that you may choose at any time not to participate. benefits this research project aims to benefit the cbr programme and the community as a whole. you may not directly benefit from taking part in this study; however, we believe that this research will give you a creative way to express yourself by identifying disability issues that are important to you. other information information about you is confidential. the recordings and transcripts will be kept in a locked file cabinet, and your identity (if you choose not to be identified by name) will not be disclosed (we will use ‘site participant’). study information will be coded and linked between your name and the code in a separate, secured place until the final document of the research is ready for submission. if the results of this study are published or presented, your name will not be used. although the researcher will take every precaution to safeguard your confidentiality and privacy, it cannot guarantee. this study has been ethically reviewed and approved by the ukzn humanities and social sciences research ethics committee (approval number hss/0646/015d) and ministry of health and social services in namibia (approval number17/3/3). in the event of any problems or concerns/questions you may contact the researcher at (provide contact details) or the ukzn humanities & social sciences research ethics committee, contact details as follows: humanities & social sciences research ethics administration research office, westville campus govan mbeki building private bag x 54001 durban 4000 kwazulu-natal, south africa tel: 27 31 2604557fax: 27 31 2604609 email: hssrec@ukzn.ac.za taking part in this study is voluntary. you can stop at any time. it is anticipated that participants will avail their time only and not incur any costs as a result of participation in the study. if there are transport costs incurred, the researcher will reimburse. there will be a flat n$700 to be given at the end of the research as a token of appreciation. in the event of refusal/withdrawal of participation the participants will receive a pro-rata benefit calculated out of the n$700. in addition the researcher will give you a t-shirt and umbrella for participating in this research. you are however requested to inform the researcher of your intention to withdraw to ensure orderly exit from the group. the researcher reserves the right to terminate participation in cases of lack of commitment. consent to participate in pilot photovoice study i (……………………name) have been informed about the phd study entitled ‘developing a monitoring and evaluation tool that can be used to elicit the experiences of people with disabilities on the community based rehabilitation programme (cbr) in namibia and to improve their quality of care’ by mr tonderai washington shumba. i understand the purpose and procedures of the study. i have been given an opportunity to answer questions about the study and have had answers to my satisfaction. i declare that my participation in this study is entirely voluntary and that i may withdraw at any time without affecting any of the benefits that i usually am entitled to. i have been informed about any available incentives and how they will be issued to me. if i have any further questions/concerns or queries related to the study i understand that i may contact the researcher at: mobile number: 0813631898 or email: shumbatw@gmail.com if i have any questions or concerns about my rights as a study participant, or if i am concerned about an aspect of the study or the researchers then i may contact: humanities & social sciences research ethics administration research office, westville campus govan mbeki building private bag x 54001 durban 4000 kwazulu-natal, south africa tel: 27 31 2604557 fax: 27 31 2604609 email: hssrec@ukzn.ac.za additional consent: i hereby provide consent to: audio-record my interview / focus group discussion    yes / no video-record my interview / focus group discussion    yes / no use of my photographs for research purposes      yes / no appendix 2: photo release form (subject informed consent). informed consent form (for person to be photographed) (to be translated into local languages) photograph consent form i, __________________________________________, hereby permit photographs of myself to be used in research projects about experiences of people with physical disabilities. this research is being carried out in conjunction with the community-based rehabilitation programme. i give permission to the investigator and photographers to use these photographs for use in all relevant community based rehabilitation research for the purposes of education, communication, promotion and increasing understanding of disability issues. i have read and understand this consent form and agree to its terms knowingly and voluntarily. appendix 3: foto vrylating vorm. ingeligte toestemingsvorm (vir die persone van wie foto’s geneem word) foto toestemingsvorm ek, ………………………………., gee hiermee toestemming dat ‘n foto van my geneem mag word vir die gebruik van die navorsing oor die ervaring van mense met liggaamlike gestremhede. hierdie navorsing word gedoen in samewerking met die gemeenskapsgebaseerde rehabiliterings program. ek gee toestemming vir die navorser en fotograwe om die foto’s te gebruik in alle toepaslike gemeenskapsgebaseerde rehabiliterings navoring vir opvoedkundige, kommunikasie en bevorderings doeleindes, as ook om begrip en kennis oor gestremdhede te verhoog. ek het hierdie toestemmingsvorm gelees, verstaan die inhoud daarvan en aanvaar die bepalings ten voll en vrywilliglik. appendix 4: consent for publication. consent form i …………………………….………………………………..…………….……………………..…………… [name] give my consent for information about myself/my child or ward/my relative (circle as appropriate) to be published in african journal on disability (manuscript 418: corresponding author: tonderai washington shumba]. i understand that the information will be published without my/my child or ward’s/my relative’s (circle as appropriate) name attached, but that full anonymity cannot be guaranteed. i understand that the text and any pictures or videos published in the article will be freely available on the internet and may be seen by the general public. the pictures, videos and text may also appear on other websites or in print, may be translated into other languages. signing this consent form does not remove my rights to privacy. name……………………………. date……………………………. signed……………………………. author name……………………………. date……………………………. signed……………………………. appendix 5: photovoice ethics: safety, impact, and obligation. photovoice is, by design, intended to include participants in participatory inquiry. they become documentary photographers at their site; their objective is to take pictures of activities, events, symbols, and people (photo subjects) that best respond to the framing (trigger) questions. the impact of this work can extend to include: the photovoice photographers, the photo subjects, and the broader community community gallery although safety and ethical considerations will vary across situations and rarely lend themselves to standard solutions, we can benefit from consideration of the following issues and questions. safety photovoice participants are asked to photograph the work of their community. they may document elements of strength and issues of concern. recording these elements for public dissemination could have negative repercussions for the participant – as the photo is being taken or after the photo and explanation of it have been disseminated. here are some concerns and what we will instruct photovoice participants to do in practice. key concerns potential risks to photovoice photographers from putting themselves in dangerous settings or situations. potential risks to photovoice photographers from photo subjects. potential risks to photovoice photographers from being identified in connection with their photos and stories. your practice give careful thought to the context and content of your photos – the communities in which you live, the issues you will be exploring and the situations you might get into while documenting your work. because you know your neighbourhoods better than we do, we encourage you to use your street sense. ‘shooting smart’ – maintaining your personal safety – is of highest priority. no photo is worth personal danger. remember that there are alternative ways to present issues (e.g. through abstract representation). take your photos in public spaces (from which participants can photograph without being seen as trespassing) versus private property. subjects of photographs the evaluation team and the photovoice participants have an ethical responsibility to their photo subjects. we want to emphasise that photovoice photographs are meant for dissemination. for this reason, there is no point in taking photos that cannot be shown for lack of the subject’s permission through the release form. here is our key concern and what we instruct photovoice participants to do in practice. key concerns potential risks to photo subjects from being identified in connection with particular situations or activities in photos. your practice as a documentary photographer, you must respect the privacy of others. if someone does not want his or her picture taken, don’t take it. it is essential that photo subjects sign a release form to be photographed. we have included forms. for children or youth under the age of 18, you will need approval from a parent or guardian. this is provided for on the release form. please make more copies if you need them. please emphasise to photo subjects that the photographs are meant for dissemination. photos cannot be shown without a subject’s release. again, there are ways to portray issues of concern that don’t require showing individuals. impact on your community key concerns potential risks to your community as a whole through generating conflict around issues or negative image. your practice because of your background using a number of dissemination tools, we are confident that you understand the importance of weighing potential for collective good against potential for both individual and collective harm. obligation of the evaluation team key concerns the photovoice process puts the evaluation team in a close partnership with site participants. the effectiveness of our work is based on bonds of trust and our commitment that participant stories and voices be meaningful. at the same time, we know that you have invested in the photovoice process and data. because of the many potential uses for these data, we will share stories in a variety of ways for a variety of purposes. your practice because of your background using a number of dissemination tools, we are confident that you understand the importance of weighing potential for collective good against potential for both individual and collective harm. we will strive to build a participatory component through ongoing phases of analysis. you will be a part of the decision making process in how the photos and stories will be disseminated. we will strive to balance agendas through finding ‘both/and’ solutions and multiple avenues for dissemination that meet the needs of various stakeholders. appendix 6: whoqol-bref instrument. about you i.d. number: before you begin we would like to ask you to answer a few general questions about yourself: by circling the correct answer or by filling in the space provided. if something is wrong with your health what do you think it is? instructions this assessment asks how you feel about your quality of life, health, or other areas of your life. please answer all the questions. if you are unsure about which response to give to a question, please choose the one that appears most appropriate. this can often be your first response. please keep in mind your standards, hopes, pleasures and concerns. we ask that you think about your life in the last 2 weeks. for example, thinking about the last 2 weeks, a question might ask: you should circle the number that best fits how much support you got from others over the last 2 weeks. so you would circle the number 4 if you got a great deal of support from others as follows. you would circle number 1 if you did not get any of the support that you needed from others in the last 2 weeks. please read each question, assess your feelings, and circle the number on the scale for each question that gives the best answer for you. the whoqol-bref the following questions ask about how much you have experienced certain things in the last 2 weeks. the following questions ask about how completely you experience or were able to do certain things in the last 2 weeks. the following questions ask you to say how good or satisfied you have felt about various aspects of your life over the last 2 weeks. the following question refers to how often you have felt or experienced certain things in the last 2 weeks. did someone help you to fill out this form? ………………………………………………………………….. how long did it take to fill this form out? …………………………………………………………………….. any other comments? thank you for your help abstract introduction assistive technology services and products in africa assistive technology workshop process workshop outcomes recommendations conclusion acknowledgements references about the author(s) surona j. visagie centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa malcolm maclachlan department of psychology and assisting living and learning (all) institute, maynooth university, maynooth, ireland olomouc university social health institute, palacký university, olomouc, czech republic elsje scheffler centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa nikola seymour centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation visagie, s.j., maclachlan, m., scheffler, e. & seymour, n., 2022, ‘promoting regional coherence and cohesion amidst multiple assistive technology initiatives in africa’, african journal of disability 11(0), a937. https://doi.org/10.4102/ajod.v11i0.937 opinion paper promoting regional coherence and cohesion amidst multiple assistive technology initiatives in africa surona j. visagie, malcolm maclachlan, elsje scheffler, nikola seymour received: 10 sept. 2021; accepted: 25 nov. 2021; published: 10 feb. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: appropriate provision of assistive technology services (ats) and products are a global health issue and essential for achieving the sustainable development goals (sdgs). the sixth african network for evidence-to-action on disability (afrinead) conference included a workshop on collaboration, cohesion and coherence in ats delivery in africa. objective: this article aimed to summarise the workshop proceedings and to provide some recommendations on how coherence and cohesion can be facilitated in assistive technology services in africa. method: a round table and small group discussions on assistive technology were facilitated in the virtual space of the afrinead conference. organisations and role players in ats and products in africa participated as keynote speakers, round table members and in small group discussions. results: there was consensus amongst participants that cohesive collaboration must be facilitated. they further agreed that users must be central to future action. there are local, national and regional initiatives, but none of these have grown into an african assistive technology platform. world health organization (who) africa can bring partners together and facilitate creation, officialisation and operationalising of a continental assistive technology platform, through building on the existing initiatives. the afrinead disability research country working groups can act as in-country coordinating bodies for ats and afford a possibility of a structured approach to assistive technology research. conclusion: it is time to break away from western institutionalised biomedical ways of providing ats in africa. africans must develop coherent, cohesive ats driven by empowered users who build on africa’s strengths and addresses the continents’ unique needs. keywords: assistive technology; assistive products; africa, coherence; cohesion. introduction the provision of appropriate assistive products (ap) and assistive technology services (ats) are essential to achieve the sustainable development goals (tebbutt et al. 2016). with their ability to enhance function, participation and quality of life, ap are enablers in multiple life areas including health, education, justice, work, recreation, culture and sports (layton et al. 2020). as such, access to ap is a global health issue that impacts structural and intermediate social determinants of health (who 2010). therefore, a workshop and round table discussion during the african network for evidence-to-action on disability (afrinead) conference of 2021 aimed to explore issues of coherence and cohesion of ats in africa. the proceedings of that workshop are presented in this article. globally, interest in ats and products has grown exponentially in the last 15 years. the increasing interest in ats started with the united nations convention on the rights of persons with disability (uncrpd) in 2006 (un 2006) and the world report on disability in 2011 (who 2011). whilst the scope of these documents was broad and not ats-specific, important foundations were laid. the uncrpd articles on general obligations and personal mobility, emphasise appropriateness, development, quality and affordability of ap, as well as access to information on ats and ats-specific training of service providers. this provided the foundation for the who global cooperation on assistive technology (gate) (who 2015) and fruits from that alliance, including: the global priority research agenda for improving access to high-quality affordable assistive technology (who 2017a); the priority assistive products list (apl) (who 2017b); training in priority assistive products (who 2018, 2019); the global research, innovation and education in assistive technology (great) summit meetings in 2017, 2019 and 2021; assistive product specifications (who 2021a), and the forthcoming global report on ats due in 2022. there have also been important regional and international ats initiatives through organisations such as: rehabilitation engineering and assistive technology society of north america (resna), australian rehabilitation and assistive technology association (arata) and the global alliance of ats organisations (gaato). in addition, there are policy and guiding documents focusing on specific types of ats such as prosthetics or wheelchairs or areas of service delivery such as rehabilitation (layton et al. 2020). resources to support supply chains (who 2021b) and access to appropriate ats were also developed. publications in scientific journals providing guidance on various aspects of ats abound, one example being the special issue of disability and rehabilitation: assistive technology, volume 13(5), 2018, with a range of articles from the first great summit. despite these high-level, up-stream initiatives, very little has changed in the lives of africans using ap and providing ats. the realities of little data, few policies and even less policy implementation, ap shortages, poor access, fragmented services and inappropriate provision of products remain everyday challenges on the continent. unstable and inadequate funding, weak domestic investment, supply chain limitations and disruption, inappropriate ap and fragile logistical capacities, compounded by low prevalence of adequately trained service providers hamper ats delivery in africa (chai 2020; edusei & mji 2019; matter et al. 2017; van niekerk, dada & tönsing 2019; visagie et al. 2020). service providers trained in africa and those from foreign countries are usually trained in western models of service delivery. they are well qualified to provide curative and therapeutic intervention on a one-on-one basis. but they are often not prepared for the african realities of differing cultural beliefs and practices, communities that have been repressed and silenced for ages and the sheer size, geographical, and infrastructure challenges of our continent. poor understanding might lead to seemingly helpful interventions that have serious negative consequences and increase disease and disability over time (mji 2019). through teaching, research and practice, international aid can wield a dominating influence, privileging western biomedical models over african, community or rights-based approaches. such dominance is ‘capacity stripping’, unjust and undermines local identities and engagement with services (maclachlan, carr & mcauliffe 2010), thus hindering the development of african solutions to healthcare and in this instance specifically ats. in the western biomedical paradigm, the voices of users are often absent. in many instances, service users are no more than ap recipients without choice. their opinions are neither asked nor heeded when given unsolicited and gratefulness is expected from them for the services provided by charitable donations from a paternalistic position with providers basking in their good deeds (visagie et al. 2015). there are examples of innovative and successful ats delivery strategies in africa, but little is known about them (de witte et al. 2019). de witte et al. (2019) found evidence of 24 (5 from africa) ats delivery strategies in a scoping review of lowand middle-income countries. these are often limited to specific impairments or technologies, specific regions, countries or even areas in a country. there knowledge is seldom shared, thus they cannot be scaled to other parts of the continent. evidence on the impact and the quality of the programmes are also scarce (de witte et al. 2019). the truth remains that most africans do not have access to the ap that they need. assistive technology services and products in africa the overall importance of ats might still be lost on the african continent where health services are often in disarray and struggling to provide cure to many suffering from infectious and non-infectious diseases, poverty-related conditions and trauma related to war, violence, accidents and displacement (african union 2016). social welfare ministries, who are often responsible for persons with disabilities, are also struggling and are providing ad hoc products and services through community organisations parallel to and disconnected from health systems. faith-based, and community-based organisations often step into the void and show creativity in ats solutions. however, user training and a link to the health sector are often neglected and sustainability is challenged (chai 2020). fragmentation and incoherence remain a serious barrier in the ats sector in africa (bostian 2020). responding to the covid-19 pandemic is further stretching africa’s already overburdened healthcare and social services (chersich et al. 2020). the provision of rehabilitation and assistive products has been put on hold in some countries during the pandemic as it is seen as non-essential services (mckinney, mckinney & swartz 2020). research in a few african countries documents the need for and access to ap, as well as funding sources, user training and maintenance (chai 2020; matter & eide 2018; visagie et al. 2017). some health ministries have affirmed their commitment to advocate for ats access (burkina faso, united republic of tanzania, republic of kenya and senegal). seven countries (ethiopia, liberia, malawi, nigeria, rwanda, sierra leone and uganda) completed the who assistive technology capacity assessment (ata-c) survey (chai 2020). a number of countries are engaged with the who rapid assistive technology assessment (rata) to obtain data to understand the need, unmet need and the barriers to access ats. the who and partners are supporting governments of nigeria, liberia, rwanda and sierra leone to integrate ats within health and social systems. tanzania is establishing a national ats programme and building a supply chain system of quality products and mass training of health workers. the ats 2030 consortium is focusing most of its efforts on improving access to affordable at in africa. assistive technology was one of the commissions of the sixth afrinead conference. the conference included an ats workshop with a focus on collaboration, cohesion and coherence in ats delivery in africa. this article summarises some of the ideas shared, challenges put to africa and possible future strategies regarding ats products and service delivery in africa. this article aims to provide some recommendations as to how coherence and cohesion can be facilitated in at in africa. assistive technology workshop process a round table and small group discussions were facilitated in the virtual space of the afrinead conference. organisations and role players in ats and ap in africa were welcomed as keynote speakers, round table members and as participants in small group discussions. during the keynote addresses professor malcolm maclachlan (from the assisting living & learning institute, maynooth university, ireland) provided conceptual background on cohesion and coherence. chapal khasnabis, on behalf of who-africa, presented the current situation on ats internationally and in africa, leaving africa with the challenge, ‘where are you?’. round table members represented the african community of assistive technology (acat), african federation of rehabilitation professionals (fato) and edit microsystems. (the representative from the southern africa federation of the disabled [safod] became unavailable at the last moment.) these presentations further provided information on where we are and what is and must be done in africa. in small group discussions, audience members and panellists discussed the questions: what should the priorities or initial focus of collaboration be? what practical strategies and platforms can be implemented to promote the sharing of information and collaboration? how do we ensure that at stakeholders across the continent and wider take ownership of these strategies? workshop outcomes priorities and initial focus: coherence and cohesion cohesion means ‘the act of forming a united whole’. in practical terms for ats in africa it means prioritising the linking and uniting of pockets and isolated bits of good practice together to cover a larger area. the term ‘united’ is especially powerful in the african context with its culture and history of division on one side and the philosophy of ubuntu on the other: the concept [ubuntu] is a basis of an african communal life which underpins an african political, business, corporate governance, justice and conflict resolution mechanism. the concept preferably approaches any human being irrespective of his or her colour, status, ideology or origin at first as a human being. the ubuntu philosophy puts emphasis on a human being as a being that should be treated with humanity and dignity in all matters. in the african context, the absence of ubuntu may culminate into disorderly and crime-riddled societies (sebola 2019:2/7). whilst eminent african leaders argued that africa is politically and culturally one nation despite language and cultural divides (sebola 2019), the reality shows a divided continent of which xenophobia is an alarming symptom (mashau 2019; sebola 2019). division occurs along tribal, cultural and political lines and even more so because of the legacy of colonialism and the fallacy of white supremacy (mashau 2019). these divisions ‘render ubuntu homeless…and are the exact opposite of what an african community stands for’ (mashau 2019). where ubuntu is practiced, equality, interdependence and interconnectedness follows despite differences in race, gender and abilities. however, disability, through its contradiction of the norm, often evokes cultural and religious fear that alienates people from each other; rendering ubuntu lost (chisale 2020). disability therefore offers a challenge to ubuntu; at the same time ubuntu offers a powerful mechanism for countering the stigma that so often ‘others’ and marginalises people with disability. ubuntu must be found and brought home; it must be forged anew and will depend on the ability of individuals and groups to trust, listen and learn (ohajunwa & mji 2021). to truly co-construct knowledge, we need to draw on lived experiences and many different perspectives. moral high ground, colonialism, tribalism and the various forms of violence/abuse that came with these have divided and shackled africans for centuries. they must be explicitly acknowledged and addressed in our lives and service provision. without doing so, we prevent respectful and meaningful collaboration (mji 2019). cohesion in this fractured context implies more than sticking together pieces. we do not want to produce awkward shapes or only cover a small extent of what is needed. we want to create a united whole, with sustainable parts that support each other, in a meaningful interconnected system. such a systemic approach must be built on principles of equity, effectiveness and efficiency with the users of assistive technology at the centre. we must find ways of working to produce processes and outcomes that chime with the african context rather than import models from elsewhere. practical strategies to promote cohesion and collaboration at policy level the status of at should be raised from a rehabilitation intervention (who 2011) to one of the key strategies of primary healthcare (phc) as presented in figure 1. figure 1: assistive technology included amongst the strategies of primary healthcare. recognition of the legitimacy of ‘assistive living’ as an authentic mode of being a valued and contributing member of society, is key to creating this shift from at being a rehabilitation-related intervention to being integrated in mainstream healthcare and well-being (khasnabis, holloway & maclachlan 2020; khasnabis, mirza & maclachlan 2015). human and technological assistance to perform daily activities in the case of impairment and functional decline should be given in the same manner as preventative practices such as vaccination and curative practices such as medication are a given. a similar suggestion was that at products are classified as essential health products. thus, their profile should be raised to be as important as that of vaccination, medication and diagnostic interventions such as x-rays. at a philosophical and organisational level, at must be recognised as a core component of health, social care, educational and work support services. furthermore, for at to meaningfully contribute to population health and wellness, population health itself must be improved (african union 2016). primary healthcare in africa suffers from poor government commitment and investment, fragmentation, limited personnel, resources and infrastructure and low status (mash et al. 2019). however, there has been a resurgence of interest in africa to strengthen phc through community-oriented primary care (copc). community-oriented primary care is ‘an approach to delivering phc that integrates primary care practice and public health for a defined community’ (mash et al. 2019). community-oriented primary care can also be the vehicle for integrating at in phc. the nine key principles of implementing copc, (1) a defined community, (2), a multidisciplinary team approach, (3) a comprehensive approach, (4) an equitable approach, (5) analysis of local health needs and assets, (6) prioritisation of health needs and interventions, (7) community participation, (8) evidence-based and scientific, (9) service integration around users, resonate closely with some of the key requirements to facilitate at service provision (mash et al. 2019). the who apl was intended as a catalyst to ensure availability of essential assistive products to all (who 2017). the apl is supported by training programmes for healthcare and community workers (who 2018, 2019). however, currently, limited local production and fragile supply chain systems limit access and availability to these essential products in africa (chai 2020). available products may not be appropriate or of poor quality. access to appropriate assistive devices may be facilitated through global initiatives such as: who assistive product specifications (2021a), a public procurement manual (2021b) and including at in the unicef catalogue. recently, the process to include hearing aids and wheelchairs was started. to ensure appropriateness of products, design must factor in feedback from users in africa. to go about service development in a coherent manner, silo of service provision, in-fighting and territorial boundaries must be recognised, named and dismantled. assistive technology services must be provided in ways targeted at user needs, less dependent on the availability of certain health professionals and able to utilise community resources. identifying skill sets in terms of competencies rather than professions ‘staff skills not staff types’ is one way to address the shortage of western-styled health professions (maclachlan, mannan & mcauliffe 2011). assistive product users and the communities they live in have knowledge and resources. they must become partners in ats delivery. industry must facilitate co-design and production initiatives in communities. users must be included in the at workforce and assisted to deliver peer-led information and support programmes (layton et al. 2021). where appropriate, the task of assessment and prescription, fitting, training and maintenance should gradually be shifted from professionals to appropriately trained users, (layton et al. 2021) community healthcare workers, and community-based rehabilitation workers (visagie et al. 2020). appropriate devices and technology must reach and enable the majority. the who recommends that design specifications of technically complex products meet the needs of as many users as possible and provide options for adjustment and customisation (who 2021a). it is generally accepted that with mainstream products (smartphones, computer technology and software) more people can be assisted. however, availability and functionality of these information technology products are not a given in africa. their cost is an inhibiting factor in poor communities. infrastructure limitations and data costs further hinder their use in africa (allsop, namisango & powell 2018; visagie et al. 2019). other mainstream products such as quadbikes for mobility might be something to consider, but costs might also prove inhibitive for their use. research on ats in africa must be relevant to africa and african communities and users (swartz 2014). some western research epistemologies, concepts and strategies might be unsuitable and devalue africa, its people and its knowledge (meekosha 2008). research methodologies must be culturally responsible and based on social justice. participants and researchers must collectively and collaboratively contribute to change through equal participation and inclusiveness. participants’ worldview must be expressed and their narratives must be passed on. research should empower them to speak and do for themselves. previous repression, inappropriate interventions and disruption of indigenous processes and practices with severely negative outcomes for indigenous people have left them distrustful of foreigners and foreign interventions (mji 2019). thus, researchers entering african spaces must do so with humility, respect and a conscious focus on freeing the voices and ways of local communities. ‘indigenous communities have critical knowledge and understandings to share that can enhance or contribute to the research process and outcomes…we had to listen and learn, more than talk’ (ohajunwa & mji 2021:4 & 5). world health organization at research resources such as rata and ata-c may be used where appropriate, but they follow quantitative positivist epistemologies where research participants are mere participants. whilst these processes might empower a few at users as research assistants, they will not facilitate participative practices, co-construction of knowledge and moving forward together. to be culturally and contextually relevant, generic quantitative instruments, measuring ‘how much’, must be interpreted with complementary discursive research methods – providing insights into meanings and interpretations. participative and emancipatory approaches such as active co-design combined with the commitment to transform assistive service delivery can result in improved service outcomes and recognising the role and expertise of at users (layton et al. 2021). in addition, financial barriers hamper access to academic journals and the information contained therein. open access journals have prohibitive publication fees leaving african academics with the choice of either paying the fees or publishing in journals that is less accessible. information sharing to enhance ownership sharing platforms already exist in africa, but these, like service delivery strategies, are not cohesive and coherent. some have a specific focus such as african journal of disability (ajod) and advancing disability research in africa (adira). others function in a specific language, such as the african community of practice on assistive technology (acat). or they operate in certain countries only (safod) or are mainly focused on one sub-set of persons interested in at (fato). collaboration amongst the various bodies is developing. for instance, the quarterly newsletter by acat is translated into french by fato to ensure wider sharing of information. these bodies have a role to play and there might be a need for even more sharing platforms as one size will not fit all. however, these platforms should, like an umbrella with different panels, fit together into a coherent whole and promote cohesiveness. there is therefore a need for a coordinating body for at in africa, which should track, collate and make available information from various platforms. sharing and networking strategies must be relevant, appropriate, accessible and active. they must be responsive to feedback and have a representative governing body. activity can probably be related to relevancy and appropriateness as people use what they find relevant and appropriate. however, use might be hampered by access. platforms will function mostly in virtual spaces to save time and money, and be more inclusive of all. but as already indicated many african at users struggle to get access to virtual spaces (allsop et al. 2018; visagie et al. 2019). the afrinead, a regional disability research network, provides a platform for networking amongst disability researchers, organisations of disabled people (odps), government, business and civil society. its main goal is to use research evidence to impact on policy and practice to effect change in the lives of persons with disability. more than 20 african countries are affiliated to the network. the afrinead is developing disability research country working groups (drcwgs) as an in-country structure to coordinate disability research. these groups might be a resource that can assist with appropriate ats research in africa. recommendations specific recommendations include: developing a research agenda for africa, which should be supported by funding for the research and dissemination of findings facilitating strategies to include users in development, design, manufacturing and all service steps facilitating the development of a diverse suitably trained provider corps identifying and upscaling of regional good practice clinical models supporting existing network strategies to develop and come together under one umbrella workshop participants suggested the creation, officialisation and operationalisation of a continental at platform in africa. world health organization africa can bring partners together and facilitate the identification and development of such a collaborative body through building on the existing initiatives. the afrinead drcwgs could function as in-country coordinating bodies for at and afford a possibility for a structured approach to at research. the afrinead mother body can identify at experts to assist in training on participative and emancipatory research skills. world health organization africa can provide training and guidance on how to source funding. conclusion it is time to break down the walls of western institutionalised biomedical ways of providing at services in africa. we must stitch together the fragments of at research and service provision in africa to create a cohesive, coherent unit through effective and meaningful collaboration. assistive technology users must be at the centre of the process. we must revisit our at practices and move from our comfort zones. if we continue in our old ways, we will continue to exclude most africans who need at. we must look outside our current structures, organisations and systems, and re-imagine an african way of providing at, which is contextually and culturally appropriate and tailored to resource realities. through a functional, innovative lens, the potential for people with disabilities in need of at can be realised in africa. acknowledgements the authors would like to acknowledge chapal khasnabis, gerhard erasmus and anereme kpandressi for their contributions to the assistive technology workshop, which have also been included in this article. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.v., m.m., e.s. and n.s. conceptualised the idea. s.v. drafted the paper. m.m., e.s. and n.s. made substantial contributions to the article and assisted with editing and finalising. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed for this article. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any 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(unicef), geneva. abstract introduction research methods and design results discussion acknowledgements references about the author(s) joseph o. mugisha medical research council/uganda virus research institute and london school of hygiene and tropical medicine, uganda research unit, entebbe, uganda ronald makanga medical research council/uganda virus research institute and london school of hygiene and tropical medicine, uganda research unit, entebbe, uganda beatrice w. kimono medical research council/uganda virus research institute and london school of hygiene and tropical medicine, uganda research unit, entebbe, uganda ivan kasamba medical research council/uganda virus research institute and london school of hygiene and tropical medicine, uganda research unit, entebbe, uganda citation mugisha, j.o., makanga, r., kimono, b.w. & kasamba, i., 2024, ‘leaving no one behind: disability and hiv prevention, knowledge among adults in a population cohort in uganda’, african journal of disability 13(0), a1497. https://doi.org/10.4102/ajod.v13i0.1497 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa,’ under the expert guidance of guest editors dr michelle botha and dr callista kahonde. additional supporting information may be found in the online version of this article as online appendix 1. original research leaving no one behind: disability and hiv prevention, knowledge among adults in a population cohort in uganda joseph o. mugisha, ronald makanga, beatrice w. kimono, ivan kasamba received: 20 june 2024; accepted: 06 nov. 2024; published: 05 dec. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with disability are a vulnerable population and are at a high risk of acquiring human immunodeficiency virus (hiv) infection. objectives: we investigated the association between severity of disability and not having knowledge of any hiv prevention method among adults in uganda. method: between january 2015 and december 2015, data were collected within a general population in uganda, on six domains of disability based on the washington group short set on functioning. in addition, routine data on socio-demographic factors and other hiv-related data were collected among adults aged 16 years and above. a continuum of functioning was developed: without disability, mild, moderate and severe. bivariate and multivariate associations of disability and not knowing any hiv prevention method were fitted using logistic regression models. results: a total of 3331 adults (60.4% female) were included. of these, 14.5% (n = 482) were classified as having either moderate or severe disability, and this proportion exponentially increased with age (p < 0.001). overall, 4.2% (n = 140) reported not knowing any hiv prevention method, with a slightly higher proportion among females than males (3.1% in males, 4.9% in females). compared to people with no disability, those with moderate or severe disability were 5 times more unlikely to know any hiv prevention methods (adjusted odds ratio = 5.45, 95% confidence interval = 3.25–9.13, p < 0.001). additionally, the combined effect of moderate and severe disability and none/incomplete primary education increased the likelihood of not knowing hiv prevention methods over and beyond their separate effects (p < 0.001). conclusion: effective hiv prevention strategies must integrate best practices that target people with disabilities. contribution: these findings contribute to the evidence of the lack of hiv prevention knowledge among people with disabilities in general populations. keywords: hiv; disability; adults; general population; uganda. introduction despite declining trends in human immunodeficiency virus (hiv) infections globally, ongoing transmission continues with substantial risk for hiv among some vulnerable sub-populations. the recent joint united nations programme on hiv/aids (unaids) report (unaids 2023) (van schalkwyk et al. 2024) on the global hiv statistics indicated that the steepest drops in numbers of new hiv infections was among children (0–14 years). the report also indicates that declines in the numbers of new hiv infections were strongest in sub-saharan africa (ssa). however, there are key sub-populations (kiwanuka et al. 2014; shisana et al. 2015) including adolescent girls and young women who still have extremely high risk of hiv infections in ssa (jin, restar & beyrer 2021; kasamba et al. 2023; karim & baxter 2019). people with disabilities might experience similar hiv risks because of the broad range of barriers in accessing hiv prevention information and strategies including social and structural barriers (hashemi et al. 2022; schenk et al. 2020; tun et al. 2016). in uganda, hiv incidence started falling in the 1990s and has continued to fall, but hiv incidence remains high in females compared to males (grabowski et al. 2017b), and a big proportion of new hiv infections remains among younger people aged 15–30 years (kasamba et al. 2023). in addition, there are still some key populations including the fisher folk and female sex workers where the hiv incidence remains disproportionally high compared to other populations (dellar, dlamini & karim 2015; jin et al. 2021; papworth et al. 2013). despite the barriers to accessing hiv prevention and care services among people with disabilities, population level data on risk, hiv knowledge and access to hiv preventive and treatment services remain scarce. the world health organization (who) estimates that approximately 1.3 billion people, representing about 16% of the global population experience a significant disability. a bigger number (approximately 2.4 billion) have difficulties with functioning and would benefit from rehabilitation (cieza et al. 2020). national estimates suggest that 11% – 13% of the population in uganda experience at least some functional difficulty with vision, hearing, mobility, communication, cognition and/or self-care (eide, nanono & omona 2020). the number of people with disabilities is likely to be growing because of an increase in non-communicable diseases (ncds) and increasing number of older people. persons with disabilities are likely to die earlier compared to people without disabilities, have poorer health and experience more limitations in everyday functioning than others (ahumuza et al. 2014; eide, nanono & omona 2021; mulumba et al. 2014). by 2017, data from ssa suggested an increased risk of hiv infection of 1.48 times in men with disabilities and 2.21 times in women with disabilities compared to men and women without disabilities (de beaudrap, mac-seing & pasquier 2014; de beaudrap et al. 2016). despite an increased risk of hiv, people with disabilities have been neglected in all sectors responding to hiv, including hiv prevention. there are several factors that increase the risk of hiv in persons with disabilities. these include stigma and discrimination (nixon et al. 2014; tun & leclerc-madlala 2017; unicef 2012), exclusion of persons with disabilities from violence prevention, inaccessibility of health care facilities and other hiv prevention facilities (hanass-hancock & alli 2015), exclusion from sexual education (international 2013) and increased economic vulnerability (banks, kuper & polack 2017). within the ugandan context, data on hiv and disability within general populations are scarce. one study based on the 2011 uganda health and demographic survey (abimanyi-ochom et al. 2017) established comparable levels of knowledge on hiv and acquired immunodeficiency syndrome (aids) for those with and those without disabilities in relation to hiv transmission during delivery (93.9% and 93.3%, respectively) and through breastfeeding (89.9% and 90.6%, respectively). however, people with disabilities had misconceptions of risk of hiv infection and how hiv is transmitted compared to those without disabilities. this study did not look at many other variables related to hiv risk and other hiv prevention methods among people with disabilities. currently, the methods undertaken for hiv prevention in uganda include prevention of mother to child transmission, safe male surgical circumcision, treatment for prevention, preand post-exposure prophylaxis, in addition to the abstinence, be faithful and condom use (abc) strategies. in 2021, unaids set the 95–95–95 targets, that include hiv testing, treatment and viral suppression that aimed to close gaps in hiv treatment coverage and outcomes in all sub-populations, age groups and geographic settings. to meet these targets, it is important that all vulnerable sub-populations including people with disabilities are not left behind in the hiv/aids response. basing on the international classification of functioning, disability and health (icf) model (cieza et al. 2009; schwarzkopf, grill & dreinhöfer 2010; üstün et al. 2003; who 2001), disability is not only having physical impairments. functioning is defined in icf model as an umbrella term for body functions, body structures, activities and participation. in this framework, a health condition may lead to an abnormality in body structure or function (i.e., impairment e.g., mobility), which can consequently cause activity limitations (e.g., difficulty walking) and participation restriction (e.g., exclusion from employment). this pathway will not be the same for all people as it is influenced by a range of personal factors (e.g., education) and environmental factors (e.g., terrain). looking at disability using the icf model, there are several ways it may affect knowledge on hiv prevention methods in an individual. within the ugandan settings, people with disabilities have not been adequately considered in hiv programmes (schenk et al. 2020). as a result, people with disabilities may not be able to access information on hiv prevention methods compared to those without disabilities (abimanyi-ochom et al. 2017). even if they were able to access this information, this would not be helpful to those with impairments in the domains of hearing, vision or cognition because the information used in most of the ugandan settings is normally designed for people without disabilities. because most of the information on hiv prevention methods is given during health education sessions at health care facilities, those with mobility problems and those who cannot access the health care facilities because of terrain may miss this information. people with disabilities within most of the african settings face economic hardships (banks et al. 2017), and this may lead to a lack of transport to health care facilities where information on hiv prevention methods is usually given. although some work has been done on disability and hiv prevention methods in south africa (eide et al. 2011; hanass-hancock, strode & grant 2011; rohleder 2010), currently, there is a paucity of data on disability and knowledge on hiv prevention methods in uganda. this article adds on the scanty literature available on severity of disability and knowledge on hiv prevention methods in uganda. we analysed available data from a single cross-sectional survey round of the general population cohort (gpc) study conducted in rural southwest uganda to investigate the association between severity of disability and not having knowledge of any hiv prevention methods among adults. research methods and design study setting the gpc study site is located in kyamulibwa subcounty in kalungu district, rural southwest uganda. the gpc covers 25 neighbouring villages with approximately 23 000 residents. the main economic activity in the study setting is crop farming with a few households rearing animals. the predominant tribe is baganda and the predominant religion is catholicism. study design the current investigation analysed data from a single cross-sectional survey round of adult residents from 13 villages out of the 25 covered by the gpc study. while the entire gpc survey round (round 24) was conducted between january 2014 and november 2015, data on washington group short set (wg-ss) on functioning (groce & mont 2017) was only collected between january 2015 until november 2015. the gpc study has been previously described (asiki et al. 2013). in brief, the gpc is an open population-based longitudinal study that was established in 1989 to study the epidemiology of hiv in a rural african population following a collaboration between the medical research council (mrc) uk and the uganda virus research institute (uvri) (asiki et al. 2013). however, over time, other research topics including disability, social science questions, ncds and other emerging infections were included. the cohort runs a gpc clinic that offers free outpatient healthcare services for cohort participants. in addition, the cohort runs an hiv clinic that provides antiretroviral drugs for people living with hiv. cohort measures the study population is assessed through annual house-to-house census rounds and a biennial serological or medical survey, during which demographic, socio-medical and serological data are collected. information gathered regularly includes data on fertility, mortality, migration, sexual behaviour, perceptions of hiv infection and hiv status. other health-related information is also investigated, with topics varying annually. between january 2015 and november 2015 (the second half of round 24 of the gpc), we included questions on wg-ss on functioning (groce & mont 2017) to the survey questionnaire. in brief, the washington group questions are a set of questions to identify people with disability. it contains multiple response questions on six domains of disability including difficulty performing basic universal activities such as walking, seeing, hearing, cognition, self-care and communication. the response values in each domain included: no difficulty, some difficulty, a lot of difficulty and cannot do at all. hiv status human immunodeficiency virus testing during round 24 was done following the ministry of health of uganda testing algorithm. the algorithm for hiv rapid testing consisted of an initial screening with the rapid test, determine hiv-1/2. if the test result was negative, the participant was given a negative diagnosis with no further rapid testing. if the test result was positive, the sample was retested with the rapid test hiv-1/2 stat-pak. if both tests gave a positive result, the participant was given a diagnosis of hiv-positive with no further rapid testing. if the tests gave discordant results (i.e., one positive and the other negative), the sample was further evaluated with the rapid test unigold recombinant hiv-1/2. for those samples assessed by all three tests, two positive test results were interpreted as a positive diagnosis. if two of the three tests gave negative results, then the participant was hiv-negative. the tests were performed by trained nurses who are part of the gpc study team. all the hiv rapid tests were performed from the field during the survey. however, positive tests and discordant tests were confirmed within the clinical laboratory by trained laboratory technicians. within the gpc study team, there was a counsellor who did preand post-test counselling. for all positive tests, the results were communicated to the study participants by the counsellor following the ugandan counselling guidelines. statistical methods washington group short set on functioning disability was the main exposure of interest, which was defined based on a quantitative continuum of functioning classified into: ‘without disability’, ‘mild’, ‘moderate’ and ‘severe’ disability. the continuum was created by combining the multiple responses from the wg-ss questions across all the domains for each participant. the ‘without disability’ classification comprised of participants who reported ‘no difficulty’ over all 6 domains. the ‘mild’ classification included participants with 1–4 domains reported as ‘some difficulty’ and no other domain coded as ‘a lot of difficulty or cannot do at all’. the ‘moderate’ classification included participants with 5 or 6 functioning domains coded ‘some difficulty’ or up to 3 domains coded ‘a lot of difficulty’, but with no other domain coded ‘cannot do at all’. the ‘severe’ classification had participants with 4 or more functioning domains coded ‘a lot of difficulty’ or any other domain reported as ‘cannot do at all’. statistical modelling having no knowledge of any hiv prevention method was the outcome of interest, defined as a dichotomous variable. logistic regression models were fitted for both the bivariate and multivariable models assessing the association between disability and not having knowledge of any hiv prevention method. age and sex were considered a priori confounders. however, other factors were considered potential confounders and included in the multivariable model if there was a 15% change in the coefficients of disability after including that variable in the model. variables were included in the model based on a hierarchical relationship starting with the distal to the proximate factors. in turn, variables were added into the models as follows: age and sex, religion and marital status, education and current occupation, number of sexual partners in the last 12 months and other sexual behavioural factors, and hiv status in the fully adjusted model. where variables were collinear, we selected the variable that explained confounding with disability. the fully adjusted model was assessed for collinearity based on variance inflation, and for effect modification by inclusion of interaction terms. the joint effects of having severe or moderate disability and none or incomplete primary education were assessed in comparison to their expected sum of individual effects given the likely contribution of education on knowing hiv prevention methods. statistical significance was determined at 5% level. ethical considerations ethical approval to conduct this study was obtained from the uganda virus research institute research and ethics committee (no. gc/127/15/12/540) and from the uganda national council for science and technology (no. hs 640). we also obtained written or thumb-printed informed consents from each of the participants in this study. results socio-demographic and behavioural characteristics a total of 3331 participants (60.4% were female) were asked on the wg-ss questions. participants were aged at least 16 years for females and 18 years for males with a median age of 37 years in females (interquartile range [iqr]: 25–51) and 39 years (iqr: 24–52) in males. among all participants, 18.9% (n = 628) were aged 55 years and above. at the time of the survey, over half of the participants were married (54.5%, n = 1815), a quarter (24.7%, n = 823) were never married/cohabited, while 9.0% (n = 299) were separated or divorced (table 1). among the participants, 38.0% (n = 1297) reported to have had no or incomplete primary education. only 15.4% (n = 514) reported their main source of livelihood as something else other than agriculture, while 16.5% (n = 550) were unemployed. table 1: participant characteristics and differences in severity of disability by each characteristic. among all participants, 62.9% (n = 2094) reported having a current main partner, 7.8% (n = 260) had never had sex, while 50.4% (n = 1679) reported having had sex within the last 1 month. in addition, 11.6% (n = 385) reported at least two sexual partners in the last 12 months prior to the interview, while 56.6% (n = 1887) reported one sexual partner. this setting has a high hiv prevalence, with an overall hiv prevalence of 10.0% (n = 334) among participants, and women had a substantially higher prevalence than men (11.2% vs. 8.3%). proportion with severe or moderate disability almost half of the population had some sort of disability (48.0%, n = 1598) categorised as either mild, moderate or severe. disability was classified as severe or moderate in 14.5% (n = 482) of the population (13.3%, n = 443 with moderate disability and 1.2%, n = 39 with severe disability) and as mild in 33.5% (n = 1116). the largest portion in the overall severe or moderate disability was attributable to disability in cognition, movement and vision, where overall severe or moderate disability reduced by 4.3%, 3.9% and 3.6% when these domains were not considered in turn. communication, self-care and hearing had lesser impact on the overall severe or moderate disability. disability increased with age (p < 0.001) (table 1), and more exponentially among participants aged 55 years and above for both males and females. among older participants aged 36 years and above, the proportion of disability was substantially higher in women than men (36–54 years: 11.5% vs. 7.8%; 55+ years: 46.7% versus 40.0% in women and men, respectively). however, among those aged 25 years and less, the proportion of moderate or severe disability was higher among young men than young women (7.1% in men vs. 3.6% in women). after adjusting for age, severe or moderate disability was associated with being separated or divorced (p < 0.001), having none/incomplete primary education (p < 0.001), not currently having a main sexual partner (p < 0.001), more than a year without sex (p < 0.001), more than two sexual partners, no condom use at last sex with a casual partner (p = 0.001), and those who suffered a fall in the last year (p < 0.001). those with occupations which did not involve crop growing were less likely to have severe or moderate disability (p = 0.002). proportion without knowledge of hiv prevention methods overall, 4.2% (n = 140) of the respondents reported not knowing any hiv prevention method, with a slightly higher proportion among females than males (3.1% in males, 4.9% in females; crude odds ratio [or] = 1.61; 95% confidence interval [ci]: 1.11–2.34; p-value = 0.011) despite no substantial differences observed in disability by sex. severity of disability remained associated with increased likelihood of not knowing any hiv prevention method in the crude and adjusted models (p < 0.001). in the fully adjusted model, participants with moderate or severe disability were 5.5 times more likely not to know any hiv prevention methods (adjusted or = 5.45, 95% cl = 3.25–9.13) than those without any disability (table 2). even those classified with mild disability were associated with 62% higher odds of not knowing any hiv prevention method (crude or = 1.62, 95% cl = 0.99–2.64), although with borderline statistical significance (p = 0.054). the larger decrease in the effects of disability after adding the variables of education and occupation suggests that this set of variables have a largest impact on the relationship between disability and not knowing any hiv prevention method. table 2: association between severity of disability and not having knowledge of any hiv prevention method among adult residents in the kyamulibwa general population cohort. our findings further suggest that the combined effect of having both severe or moderate disability and none or incomplete primary education was synergistic, given that their joint effect was 3.3 times higher (p < 0.001) than the sum of the individual effects of each (online appendix 1: table 1-a1). in the fully adjusted model, sex and age did not remain independently associated with not knowing any hiv prevention methods (online appendix 1: table 2-a1). on the other hand, occupation and education remained independently associated with not knowing any hiv prevention methods. the results did not show any suggestion for collinearity in the fully adjusted model and did not find interaction between disability and other independent factors, except education which was a strong confounder. discussion findings from this study show that people with disabilities determined by the washington group questions were almost five times likely not to know any hiv prevention method compared to those without disabilities. in addition, a higher proportion of women with disabilities reported not knowing any hiv prevention method compared to men. as the joint united nations programme on hiv/aids aims for hiv testing, treatment and viral suppression rates to be 95%-95%-95% by 2025 (heath, levi & hill 2021, mccreesh et al. 2017), it is important that no population group is left behind in this endeavour (assefa et al. 2020), including people with disabilities. for people living with hiv to join the cascade of care, they need to first have knowledge on hiv prevention methods, whose first step is to know one’s hiv status by undergoing hiv testing. the other methods for hiv prevention in uganda include, having all people who test hiv-positive starting antiretroviral drugs immediately (eisinger et al. 2019), voluntary male surgical circumcision (loevinsohn et al. 2021; reed et al. 2012), prevention of mother-to-child transmission (schouten et al. 2011), pre-exposure prophylaxis (burns et al. 2014) and post-exposure prophylaxis (sultan, benn & waters 2014), and consistent condom use (ahmed et al. 2001; smith et al. 2015; ukwuani, tsui & suchindran 2003). combination hiv prevention strategies have also been recommended (baxter & abdool karim 2016; grabowski et al. 2017; kremer et al. 2023). all population groups should have knowledge on these hiv prevention strategies, as a first step, towards hiv prevention and contribute to the global goal of ending the hiv epidemic as a public threat by 2030. there are several things that may explain a lack of knowledge about hiv prevention among people with disabilities. these may include stigma and discrimination (andersen 2006; elliott, utyasheva & zack 2009; jackson-best & edwards 2018; schenk et al. 2020), health facility-related factors including inaccessible facilities (nampewo 2017), a lack of access to affordable health and social services (hanass-hancock & alli 2015) and social and economic factors (banks et al. 2017; braathen et al. 2016). for people with disabilities not to be left behind in the hiv fight, all these factors need to be looked at in both hiv programming and practice. from our literature search, most of the longitudinal cohorts on hiv epidemiology have not adequately included questions on disability and hiv (rohleder et al. 2009). most of the studies which have been undertaken in ssa have been cross-sectional studies, and a few are demographic and health surveys. one of the strengths of this article is that for the first time within the cohort, we collected survey data on disability using the washington group questions. within the gpc, these data are important baseline data on hiv and disability, and will enable us to look at different time points in our cohort to see how knowledge on hiv in general and hiv prevention methods are evolving among people with disabilities. this article also has some limitations. firstly, we did not relate each individual disability with hiv prevention knowledge. to do this, a large enough number of participants with an individual disability would be needed. some individual disabilities (e.g., deafness) have been shown to be highly associated with a lack of knowledge on hiv prevention methods (groce, yousafzai & van der maas 2007; groce et al. 2006). however, using the washington group question is the best because there may be individuals with decreased functioning which may not be identified by looking at an individual disability. secondly, we would like to acknowledge that data for this study were collected in 2015, and many things may have changed since then. however, this study brings in some evidence of a strong association between disability determined by the washington group questions and hiv prevention knowledge. within the gpc round we are conducting currently (running between 2023 and 2025 inclusive), we are again collecting data on washington group questions which should enable us to look at differences on disability and hiv prevention knowledge in a period of one decade. the findings from this paper call for effective hiv prevention strategies that consider the unique needs of people with disabilities and address their barriers to accessing hiv services. acknowledgements we would like to thank all the field staff of the general population cohort, our study participants and the community leaders for the continuous support in collecting longitudinal data from the cohort. competing interests the authors reported that they received funding from medical research council united kingdom which may be affected by the research reported in the enclosed publication. the authors have disclosed those interests fully and have implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions j.o.m., i.k., r.m. and b.k. contributed towards the conceptualisation, study design, data analysis and the writing of the final article. j.o.m. also contributed to the study administration, i.k. assisted with the data curation and b.k. was responsible for the data collection. funding information the study was funded by core funds from medical research council united kingdom. data availability data are available on: https://apps.mrcuganda.org/mrcdatavisibility/home/gpc. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or 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with children and adolescents with disabilities, unicef, new york, ny. üstün, t.b., chatterji, s., bickenbach, j., kostanjsek, n. & schneider, m., 2003, ‘the international classification of functioning, disability and health: a new tool for understanding disability and health’, disability and rehabilitation 25(11–12), 565–571. https://doi.org/10.1080/0963828031000137063 van schalkwyk, c., mahy, m., johnson, l.f. & imai-eaton, j.w., 2024, ‘updated data and methods for the 2023 unaids hiv estimates’, jaids journal of acquired immune deficiency syndromes 95(1s), e1–e4. https://doi.org/10.1097/qai.0000000000003344 who, 2001, international classification of functioning, disability and health, who geneva, viewed 30 october 2024, from https://iris.who.int/bitstream/handle/10665/42407/9241545429.pdf;jsessionid=5650a1c035fc8293ab79f798d7fabb36?sequence=1. abstract introduction methods materials and methods results discussion conclusion acknowledgements references about the author(s) khetsiwe p. masuku department of speech therapy and audiology, university of the witwatersrand, south africa munyane mophosho department of speech therapy and audiology, university of the witwatersrand, south africa muziwakhe tshabalala department of physiotherapy, sefako makgatho health sciences university, south africa citation masuku, k.p., mophosho, m. & tshabalala, m., 2018, ‘“i felt pain. deep pain…”: experiences of primary caregivers of stroke survivors with aphasia in a south african township’, african journal of disability 7(0), a368. https://doi.org/10.4102/ajod.v7i0.368 original research ‘i felt pain. deep pain…’: experiences of primary caregivers of stroke survivors with aphasia in a south african township khetsiwe p. masuku, munyane mophosho, muziwakhe tshabalala received: 20 feb. 2017; accepted: 19 dec. 2017; published: 08 mar. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: aphasia is an acquired impairment in language and in the cognitive processes that underlie language. aphasia affects the quality of life of the person with aphasia (pwa) and his or her families in various ways in diverse contexts and cultures. it is therefore important that speech language therapists understand how different contextual and cultural factors may mediate experiences. purpose: the aim of the study was to describe the caregiving experience of female caregivers of pwa residing in tembisa, a township situated in the east of johannesburg. method: qualitative, semi-structured interviews were conducted with primary caregivers of pwa. purposive sampling was used to recruit 14 primary caregivers of pwa who were daughters, daughters-in-law or wives of the pwa. the interviews were conducted in participants’ first language and analysed by the researcher, who is proficient in isizulu. data were analysed according to the principles of thematic analysis. results: findings indicated that caregivers are unfamiliar with aphasia and the support available to them. participants experienced frustration and found communication to be challenging owing to their lack of communication strategies. the participants’ experiences reflected their context-specific experiences, such as feminisation of caregiving, barriers to healthcare, the influence of low health literacy and contextual perspectives on stroke and aphasia. conclusions: contextual factors of caregivers in tembisa have an influence on the experiences between caregivers and pwa, the feelings of individuals and families and health-seeking behaviours of individuals and families. introduction the incidence of stroke has risen owing to the disease profile in developing countries, which includes the impact of hiv and aids in africa, the impact of urbanisation on diet and lifestyle (coovadia et al. 2009) and the high rates of interpersonal violence and motor vehicle accidents (jamieson, harrison & berry 2008). there is a rapidly increasing burden of non-communicable diseases in poor and disadvantaged populations contributing to widening health gaps (penn & armstrong 2017: 566). hence, those living in impoverished and marginalised communities are particularly susceptible to chronic, non-communicable diseases (sambo & kirigia 2014). stroke remains one of the most devastating of all the non-communicable and neurological diseases, often causing death or gross physical impairment or disability (mukherjee & patil 2011). stroke also results in aphasia, which is an acquired communication disorder caused by brain damage and characterised by impairment of language modalities such as speaking, listening, reading and writing (hallowell & chapey 2008). aphasia affects caregivers, often in profound ways (legg 2010), as family members generally become caregivers when a relative sustains disabling conditions as a result of a stroke (kniepman & cupler 2014). a ‘primary caregiver of people with aphasia (pcpwa)’ in this study is defined as a family member tasked with providing unpaid care for another family member affected by aphasia as a result of a stroke. primary caregivers of people with a stroke are generally responsible for facilitating participation of the person with a stroke in his or her daily functional activities (hilton 2011). there is a plethora of research that has documented the experiences of caregivers for pwa, as well as their experiences when communicating with the pwa (earnes et al. 2008; gillespie, murphy & place 2010; patricio, jesus & cruice 2013). these studies have suggested that pcpwas lack an understanding of what aphasia is and are therefore in need of empowerment through education. there has also been documented findings of how ill-prepared caregivers are regarding their new roles and how to deal with the sudden and often permanent changes caused by aphasia (avent et al. 2005; howe et al. 2012). hence, the need for support in this new role should be emphasised (howe et al. 2012; le dorze & signori 2010). the changes in the communication environments between partners have been documented and are seen to result in increased emotional reactions, including frustration, strain, stress, anger, burnout and resentment, as well as interpersonal relationship changes such as reduced marital quality of life, limitations in family roles and responsibilities, and restricted social life (avent et al. 2005; howe et al. 2012). primary caregivers of people with aphasia need to be able to communicate and maintain their relationship with the pwa (howe et al. 2012). furthermore, they need to be given information on the disorder so that they have a better understanding of what it is all about (howe et al. 2012; le dorze & signori 2010). research in south africa that has stressed the importance of the influence of context and culture, especially in poverty-stricken communities, in understanding aphasia and informing health-seeking behaviours include studies by legg (2010), legg and penn (2013a, 2013b, 2014) and penn (2014). in the african context, women are the main caregivers of persons with disabilities, including aphasia (chitayat 2009; cordier 2014; posner 2016). two-thirds of the caregivers in south african households are women and this is often accepted as the regular mandate in the south african culture (chitayat 2009). the feminisation of caregiving and its relations to poverty has been a feature of most caregivers in the developing world (world health organization 2002). it is imperative to highlight the implications of leaving caregiving exclusively to women (kang’ethe 2013). women are placed into the caregiving role which results in fewer opportunities for socio-economic growth and employment (makiwane & berry 2013). the loss of income within the family of a person with a disability will therefore result in poverty (cordier 2014; makiwane & berry 2013), especially if the person with the disability or the pcpwa was the sole breadwinner. households that have family members with disabilities have particular economic demands on them which other households do not (world health organization/world bank 2011). besides caregiving, women generally hold more household duties and responsibilities, limiting their opportunities for income generation, and further contributing to their state of poverty (cordier 2014; makiwane & berry 2013). feminisation of caregiving has been found to be exacerbated by additional stressors in many south african families (coetzee 2016), which include exhaustion and burnout, which are often the result of a lack of a break from caring (mathye & ekseen, 2015; sandy, kgole & mavundla 2013), compounded by the extreme loneliness experienced by caregivers as a result of not being supported, especially by families within their caring role (geiger 2012; mathye & eksteen 2015). this often results in caregivers feeling isolated from their communities (mhaule & ntswane-lebang 2009). there are numerous ways in which people with aphasia and their families explain illness and disability in south africa. explanations include witchcraft, ancestor reprisal, social causes and ignorance (legg & penn 2013a). some of these explanations can be attributed to poor health literacy, especially in low socio-economic contexts in south africa. public awareness and knowledge of aphasia and its effects are limited in comparison with other disorders with similar or lower prevalence (sherratt 2011). health literacy is important for informal caregivers because they have the responsibility of health decision-making, communicating with healthcare providers and problem-solving on behalf of the person with a disability (dubenske et al. 2010). many aspects of caregivers’ personal and environmental contexts interact to inform the ways in which they experience caregiving (bingham 2017); therefore, the current study aimed to highlight the experiences of south african women caregivers of pwas, who reside in tembisa, a township situated in ekurhuleni in the east of johannesburg. tembisa was established in 1957, when the segregation policies of the apartheid regime enforced the resettlement of black south africans from alexandra and other areas in edenvale, kempton park, midrand and germiston. tembisa remains a location where the vast majority of residents are black people (ekurhuleni metropolitan municipality, 2001). people in townships live in a context of poverty, inadequate service delivery, poor housing, high rates of crime and unemployment, and dissatisfaction with the government (pieterse 2011). methods objectives the main aim of this study was to provide an in-depth description and discussion of the experiences of pcpwas who reside in a south african township. in the study, we explored caring for a pwa and we also sought to understand the unique experiences of being a pcpwa in a township context. research design the study employed a qualitative research design. semi-structured interviews were conducted with the primary caregivers of pwas who were recruited through purposive sampling. purposive sampling is widely used in qualitative research for the identification and selection of information-rich cases related to the phenomenon of interest (palinkas et al. 2015). the researcher conducted the interviews in isizulu and audio recorded, transcribed and translated them into english. translation from isizulu to english was done for the understanding of the analysis by a wider audience. throughout the data collection period, interviews were held at convenient times for participants. the researcher also ensured that participants felt comfortable to have a conversation about their experiences (boyce & neale 2006). the participants were more likely to have been comfortable communicating with the researcher who comes from the same cultural and linguistic background as they did. participants a total of 14 pcpwas took part in the study and were closely related to the pwas. the mean age of the pcpwa was 38 years – the youngest was 21 years old and the eldest was 65 years old. the older participants were more likely wives (six), and the younger were (five/one) daughters/daughters-in-law of the pwa. the education level of the pcpwa ranged from mostly no formal education to one participant with a university degree. eight of the participants had been unemployed at the time of the stroke, and six had had to give up their employment so as to become full-time caregivers. all caregivers were women, which is a trend in the south african context (posner 2016). the experience of caregiving ranged from 3 months to more than 3 years, with nine of the caregivers having cared for the pwa for less than 1 year, three under 2 years and two for more than 2 years (table 1). table 1: research participants: demographic details. materials and methods a self-developed interview schedule was used to collect data on the experiences of pcpwa. the interview schedule comprised five sections. section a consisted of demographic information. section b aimed to extract information on the participants’ understanding of aphasia and its causes. section c drew information on the participants’ experience of communicating with the pwa. section d explored the pcpwa’s experiences of caring for the pwa. section e encompassed questions aimed at describing the kinds of support structures available for pcpwa. interview questions were developed based on existing literature on the experiences of pcpwas. the interview guide was developed in english and translated into isizulu by the researcher and back translated into english by an independent translator to ensure validity. all interviews were audio recorded. data collection procedure permission to conduct the study was obtained from the chief executive officer of the tertiary hospital at which the study was conducted. the speech therapy and audiology department of the hospital assisted with the recruitment process by providing the researcher with the contact details of the prospective participants. the researcher made contact with the participants telephonically to request their participation in the study. the hospital provided the researcher with a private room in the speech therapy and audiology department, which is where all the interviews were conducted. each interview lasted an average of 40 min. written informed consent for the interviews and audio recordings was obtained from participants in both isizulu and english. confidentiality, voluntary participation and disclosure of potential risks and benefits were communicated to the participants before the commencement of the data collection process. data analysis data were analysed according to the principles of thematic analysis (braun & clarke 2006). the researcher was guided by shields and twycross’s (2003) recommendations of what the process of data analysis entails. the first stage of thematic analysis was the verbatim transcription of the isizulu interviews, which were then translated to english and back translated to isizulu by an independent coder. this also involved checking for any omissions or errors by the researcher. secondly, the process included reviewing the translated transcripts several times, while listing emerging and re-emerging themes based on the experiences of the participants. the interviews were collected over 14 weeks; consequently, analysis began while other interviews were going on as per cresswell’s (2007) guidelines. the coding was done based on the prevalence of the themed pattern in the data set. prevalence was determined in terms of the number of responses across the entire data set. themed patterns repeated more than twice by different primary caregivers were considered. consensus coding was used to identify codes and themes related to caregivers’ experiences. thereafter, the themes emerged from the transcripts through words, phrases, sentences and paragraphs that represent or symbolise issues relating to experiences of the participants. rigour strategies proposed by lincoln and guba (1999) were employed to ensure rigour in the study. credibility was ensured through describing the data collection and data analysis process. credibility was also ensured through providing verbatim transcriptions of the recorded data including back translation of isizulu to english. to ensure confirmability, data analysis results were well grounded in data. there were also peer debrief discussions between authors during data analysis to ensure that there was agreement on codes and themes. detailed field notes were collected during data collection. the researcher spent time prior to the actual research to familiarise herself with the context and research tools prior to a pilot study. description of the research setting, participants and research processes was given. this is to ensure that the study can be replicated. ethical considerations ethical clearance was obtained from the medunsa research and ethics committee (project number: mrec/h/2011:pg). results from the analysis of the data, six main themes emerged: understanding of aphasia; engagement; support; emotions: burnout and burden of care; challenges to care; and feminisation of caregiving. understanding of aphasia primary caregivers in this study were able to recognise a stroke, although they had only limited understanding of aphasia. they attributed the causes of a stroke to different factors which included witchcraft (the belief that someone bewitched them because of jealousy at work), falls, biomedical rationales (the belief that the person had a stroke, but appeasing ancestors would help them heal), lifestyle aspects (poor diet, smoking and defaulting on hypertension medication), antiretroviral medication and old age. aphasia was also explained as the pwa having a problem with his or her mind, as can be seen in the following quote: ‘i know that he can’t talk. what i know is how sometimes his mind is going down. he now thinks like a child and cannot talk. he uses his hands. he is behaving like a child. ja, his mind is just upside down and i am told it’s because of a stroke. i cannot understand how it’s because of a stroke.’ (participant 8, 37 years old, wife) some caregivers did not know what the cause of aphasia was and did not believe that a stroke could result in communication difficulties. ‘no, i don’t want to lie, i really don’t know. all i know is that it is not possible for someone to all of a sudden stop talking. it is just not possible, hmmm, hmmm. it is not possible. you see my child, there are a lot of people with that (a stroke) that i know of and they talk so it is just not possible. that is the reason why i did not say anything about him not speaking to the nurses.’ (participant 13, 53 years old, wife) stroke being attributed to biomedical causes was mostly common in participants who had higher levels of education, as illustrated in the following quote: ‘well, there are certain causes depicted of them, it’s that it may have been caused by alcohol intake, cigarette intake and he used to be actively doing such things and he is also old, and i mean we don’t really know why he is not talking. i mean, it’s a right-hand stroke, it’s probably the most dangerous, but we don’t know. so it could have been due to multiple factors, i don’t know.’ (participant 6, 35 years old, daughter; highest level of education is a diploma). engagement interactions and family relationships had been affected as a result of the communication difficulties experienced by the pwa. it became clear that the pcpwa did not have the necessary strategies to facilitate communication, even when pwas could initiate conversations. as conversational strategies had not been taught to the caregivers, to the pwa or to their family, participants experienced communication to be tedious, frustrating and humiliating, and caregivers then tend to lose patience. ‘okay now honestly, i find that there is not that much communication because i cannot understand him when he is talking. i can barely make out what he is trying to say. i can ask him a question and he will struggle to answer me.’ (participant 2, 23 years old, daughter) ‘yes, it’s tough. sometimes i feel like i am losing patience with her. she keeps saying ‘leyami’ [‘that’s mine’ – a contextually meaningless word in isizulu] and i really don’t understand. i just get impatient. sometimes i even say to her that she must not say anything, because i don’t understand what she really wants. i have lost my patience with her because ëyi [‘hey’ – exclamation] it’s been what, 8 months and her speech is not back. like normal, like before the stroke.’ (participant 1, 21 years old, daughter) support the lack of support, especially from some family members, resulted in the caregivers struggling to cope with the sudden burden of caring for the pwa. the lack of financial and social support resulted in the feeling of neediness and loneliness, which in turn further exacerbated the burden of caregiving. financial and social support tended to lessen as time progressed, as illustrated in the quotes from participants 1 and 13 below: ‘support laughs. the family is alive and well. one of them is in daveyton and the other lives here in tembisa. families don’t say anything about them. they are the same family that never comes anymore. you know what, family is there when you are well and have money. as soon as you get ill, they are gone. family laughs. one last came in december and the other in january.’ (participant 13, 53 years old, wife) ‘ja [yes], support was there. ja [yes], especially at the time when she had just had her stroke attack. when she had just had her stroke, there was so much support, but now i feel like people are tired or something, i really don’t know. all i know is that we currently don’t have as much support as we had in the beginning.’ (participant 1, 21 years old, daughter) emotions: burnout and burden of care participants reported that they go through a lot of emotional and psychological difficulties as a result of caregiving. most of them had to make lifestyle changes to accommodate the extra burden of caring for their family members – a role that was expected of them as spouses, the elder sibling and generally as women. the physical pain experienced, especially by the elderly participants, and the emotional pain of having someone depend on them was too heavy for the caregivers to bear. none of the participants had spoken to anyone about the caregiving experience before this study was conducted. as a result, eight participants were referred to a psychologist for counselling after the interviews. ‘i felt pain. so much pain. you see because it was such a change. let me tell you something that you probably don’t know about me. i am person of arthritis and all the other things that affect a person at the old age and it therefore becomes very difficult to have to carry this person, think for this person and wash this person whether i like it or not.’ (participant 14, 65 years old, wife) ‘i felt pain. i felt deep pain, because of this thing of him not talking. because of this talking thing.’ (participant 13, 53 years old, wife) ‘i was painful, wena [‘you’ – exclamation]. you … you know that person is a breadwinner and everyone in his family is looking up to him. he is supporting everyone. then it was painful, but i think that i am recovering now.’ (participant 8, 37 years old, wife) challenges to care the lack of finances and poverty came across very strongly in the participants’ responses. because of the lack of finances, participants often sacrificed rehabilitation visits for basic needs such as food for the family. barriers of access to healthcare such as transportation, the long waiting periods and having to pay multiple times for different services proved to be challenging for the participants. for the older participants, their biggest challenge was that of physically caring for the pwa, such as lifting them during bath time. ‘what i can say is that he was supporting us financially and now he is not working, so things are not good. now we are being supported by my mother alone. she is now working alone. now she has to pay my father’s medical bills, pay for my sister’s child at school, run the household and also pay for my tertiary fees. it is very difficult when the source is just only one person. we barely get by monthly.’ (participant 2, 23 years old, daughter) ‘i don’t think that you bring stroke upon yourself, so i don’t think that it is necessary for us to be paying for everything. i mean in one visit to the hospital, you pay at the doctor’s, at the physios, at ot and at speech. how much is that all together. now i have had to stop ot and speech and we can only afford physio for now.’ (participant 1, 21 years old, daughter) feminisation of caregiving all of the participants of the study were female primary caregivers. there appears to be a notion among participants that the role of caring is one that should be taken on by women as per cultural norms. primary caregivers of people with aphasia have had to change their routines, sacrifice the time that they used to make money and also sacrifice their social lives to care for the pwa because it was expected of them as women. this is evident in what the following participants said: ‘we are a family of three boys and two girls, it was therefore decided that being the eldest girl, my sister would be better cared for by me. i run a spaza outside my house, so that i can be near her when she needs me. the money from my shop really helps us with the buying of the food. i have applied for the grant, which i am hoping will be approved this time as we need the money.’ (participant 11, 40 year old, sister) ‘my father-in-law came to live with us because my husband is the first born. and being the daughter-in-law i have to take care of him. remember in our culture you marry the whole family. i was working full time, but i have had to take part-time employment so that i can spend some time to care for him. yoh [exclamation], it’s not easy.’ (participant 4, 28 years old, daughter-in-law) discussion the study reveals a distressing picture of the hardships that caregivers endure in order to ensure the well-being of the pwa in a context of poverty in south africa. the current study highlighted how primary caregivers of pwas had some knowledge about a stroke but did not understand the extent of language and communication impairments associated with aphasia. caregivers attributed the causes of a stroke to many aspects such as lifestyle aspects, falls, problems with brain and witchcraft. these findings resonate with studies by penn (2014) and legg and penn (2013a) whose findings in khayelitsha in the western cape of south africa, a large sprawling township characterised by similar levels of poverty and limited resources, were that different people had different understandings of aphasia as well as differing views of aetiology (legg 2010; legg & penn 2013a). the lack of information on aphasia that the pcpwas had access to in legg’s research (2010) as well as the current study highlighted their poor health literacy which has been identified in many communities (sherratt 2011). even though participants in this study attributed aphasia to a different cause, they continued to seek western ways of intervention such as speech therapy, however there seemed not to have been a holistic management to include caregiver education and strategies to facilitate communication with pwa. the lack of knowledge about conversational skills on the part of both the caregivers and pwa in the current study resulted in feelings of frustration and humiliation. these findings are mirrored in other international studies, such as those by avent et al. (2005), blom johansson, calsson and sonnander (2011) and blom johansson (2012). a significant decline in communication, along with changes in everyday life conversations, can further complicate the task of caregiving. reduced communication in the home environment results in strained relationships that were previously healthy among family members. the burden of care is placed firmly on the women in this community, which speaks for the feminisation of caregiving, not just in this study but in the african context as well. the impact of caregiving was notable in women, in particular spouses, daughters, daughters-in-law and sisters, who were the primary caregivers in the study. this emphasises the gendered impact of disability care and livelihoods as demonstrated in african and international studies such as those by zuurmond et al. (2016) and bakas et al. (2006). the feminisation of caregiving is coupled with high levels of poverty experienced by the women in this study. as in previous studies on caregiving for persons with disabilities in africa, poverty was often the result of the lack of income from family (makiwane & berry 2013) as the pwa was mostly the breadwinner and also because the caregiving role did not allow enough time and opportunities for caregivers to be employed (cordier 2014; makiwane & berry 2013). the participants of the study were women who by virtue of their age should have been still active in the economy but could not do so because of their role as caregivers. this economic marginalisation therefore has implications for gender, social and human rights (erreguerena 2015). the lack of social support, especially from family members, further exacerbated the burden of caring for the pwa, as there was no one with whom the caregiver’s role could be shared. caregivers in this study felt lonely, which is often the case when after the onset of disability, family and social networks are weakened (oosterhoff & kett 2014); however, it is during this time that caregivers and family members need to support each other (howe et al. 2012; le dorze & signori 2010). the lack of social engagement and support also resulted in feelings of isolation and loneliness clearly expressed by the participants, as has been found in other studies (geiger 2012; mathye & eksteen 2015). the burden and the emotional distress caused by the pwas not being able to take care of themselves and thus being entirely dependent on the caregivers was evident in this study. the self-care limitations experienced by pwas resulted in strain experienced by primary caregivers. this was particularly the case with elderly caregivers, because this was an added burden as they already had health concerns of their own. awareness of their psychological and emotional needs was linked to the level of education of participants. participants with higher levels of education could recognise that caring for their family members had brought on psychological and emotional problems. there was evidence of deep pain among participants. most of the pain that was experienced was attributed not only to the change in interactions between the caregivers and the pwa but also to the physical pain that caregivers experience, as a result of having to assist pwa with daily activities that required physical assistance. the pain was as a result of feeling sorry for the pwa and the feeling of losing a breadwinner. some caregivers however appeared to be more sympathetic towards the pain experienced by the pwas. the emotional breakdown experienced by some of the participants in the current study when speaking about their concerns was not anticipated at the start of this study, and it is recommended that future studies should take this into consideration. conclusion the need for knowledge on aphasia, communication strategies and support for caregivers as part of the management of pwa cannot be overly emphasised. therefore, there is a need to re-evaluate the means of delivering this care, especially in economically disadvantaged areas such as townships. it has been established that factors intrinsically linked with poverty are the ones that make up social determinants of health. consequently, healthcare, poverty and community development are inseparable. we need to establish partnerships between health, education and the community development sectors, where there are integrated, bottom-up, people-centred, community-based programmes such as community-based rehabilitation. speech language therapists can liaise with community-based health workers, traditional healers, non-governmental organisations and primary healthcare nurses, who have an understanding of the culture and context. these teams would be used as a vehicle to provide community-based healthcare, reinforce health literacy and provide support and empowerment to pcpwa and pwas. acknowledgements funding by medical university of south africa (medunsa) school of public health postgraduate fund was provided for part of the author, khetsiwe dlamini’s, master’s studies and funding by the university of the witwatersrand (wits) diversifying the academy grant was awarded to munyane mophosho and it was used for the article’s page fees. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions k.p.m., m.t. and m.m. contributed equally to the writing of this article. references avent, j., glista, s., wallace, s., jackson, j., nishioka, j. & yip, w., 2005, ‘family information needs about aphasia’, aphasiology 19(3–5), 365–375. https://doi.org/10.1080/02687030444000813 bakas, t., faha, r.n., kroenke, k., plue, l., perkins, s.m. & william, l.s., 2006, ‘outcomes among family caregivers of aphasics versus nonaphasic survivors’, rehabilitation 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(eds.) isbn: 13:978-9044134179; 10:9044134175 publisher: amazon, 2016, $51.75* *book price at time of review review title: erratum: rethinking disability: the need to rethink representation reviewer: jenna-lee procter1 affiliation: 1department of psychology, stellenbosch university, south africa corresponding author: jenna-lee procter, jennalee.za@gmail.com how to cite this article: procter, j-l., 2019, ‘erratum: rethinking disability: the need to rethink representation’, african journal of disability 8(0), a605. https://doi.org/10.4102/ajod.v8i0.605 note: doi of original article: https://doi.org/10.4102/ajod.v7i0.498 copyright notice: © 2019. the authors. licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. in the version of this article published earlier, the term ‘mixed race’ was unintentionally misused and is hereby updated to be ‘people of colour’. the term ‘people of colour’ includes people of all non-white racial or ethnic groups in the world that have been and are still being disenfranchised or marginalised by white privilege. ‘people of colour’ should not be confused with the south african term ‘coloured’ (as per the employment equity act no. 55 of 1998). ‘people of colour’ is by definition a world-wide anti-racist identity. the paragraph is hereby updated to read as follows: i was disappointed to discover, despite emphasising on disability mundus, that the volume’s dominant voice came from the white, global north. only a few of the contributors were people of colour and none, as far as i could tell, were from africa, central or east asia, india or eastern europe. i found this lack of representation problematic in a text that espouses ‘world perspectives’ and uses a title which implies that ‘world’ is synonymous with north america and western europe. the exclusion of african researchers from the global academy is indicative of the failure to decolonise, losing out on useful transnational and transferable identity capital. the majority of people with disabilities in fact live in the global south, and we have many competent, ardent and inspiring disability scholars and academics who could have contributed to rethinking disability. the publisher apologises for any inconvenience that the usage of the incorrect term may have caused. abstract introduction materials and methods ethical consideration results discussion conclusion recommendations acknowledgements references about the author(s) barry s. andrews department of sport, recreation, and exercise science, university of the western cape, south africa elizabeth s. bressan centre for human performance science, stellenbosch university, south africa citation andrews, b.s. & bressan, e.s., 2018, ‘the effect of synchronised metronome training: a case study in a single leg, below knee paralympic sprinter’, african journal of disability 7(0), a367. https://doi.org/10.4102/ajod.v7i0.367 note: this article is partially based on the author’s thesis of the degree of doctor of philosophy in sport science at the department of sport science, stellenbosch university, south africa, with promoter prof e.s bressan, received april 2014 available here: http://scholar.sun.ac.za/handle/10019.1/86436 original research the effect of synchronised metronome training: a case study in a single leg, below knee paralympic sprinter barry s. andrews, elizabeth s. bressan received: 13 feb. 2017; accepted: 28 feb. 2018; published: 23 may 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: to optimise sprint performance, one needs to understand how motor control affects motor performance. researchers have proposed that the dynamic systems theory be adopted for explaining motor performance, skill acquisition and the development of pedagogical methods. within this theory, the individual is seen as a complex system that functions as the interaction of many sub-systems. entrained movements would be characterised by optimal sequencing, timing and grading of muscle activation. one of the identified control parameters for running is the rhythm in the coordination pattern. objectives: the objectives of this study were twofold: firstly to investigate whether 6 weeks of timing and rhythmicity training using the computer-based interactive metronome™ (im™) system improves motor timing and rhythmicity, and secondly to investigate whether such effects of im™ influence the kinematic variables of a sprint. methods: this study followed a semi-quantitative analysis case study approach using a paralympic sprinter with a single below knee amputation participated in this study. data for acceleration and maximal running velocity phases were collected using video recorders. results and conclusions: as found by previous research, the im™ programme improved the motor timing and rhythmicity of the athlete. however, in contrast to previous research, only minimal improvements, non-significant improvements, were seen in the actual motor performance. this athlete was an older more established athlete and it is therefore recommended that these types of programmes should be followed by young participants in the more fundamental phases of their movement development, to show best results. introduction in modern athletics, top-level competitors sprint all distances from 100 m to 400 m. the sprinting action requires fast reaction time, exceptional acceleration and an efficient running style (carr 1991). for analysis purposes, the sprint has been divided into three phases by mann and sprague (1983), namely the acceleration phase, the maximal running velocity phase and the deceleration phase. the acceleration and maximal running velocity phases are said to be the main determinants of sprint performance, with the deceleration phase having a lesser effect on the overall sprint performance (mann & herman 1985). each of these phases has unique kinematic characteristics that can optimise the performance during that specific phase (i.e. stride length and stride frequency) (hay 1978; hay & reid 1988). although the kinematics are similar within the phases, they are not identical during all phases and need to be evaluated in isolation (hay 1993). to better understand how to optimise sprint performance, it is important to understand how motor control affects motor performance. as advocates of an ecological approach for the understanding of motor control, haywood and getchell (2009) proposed that the dynamic systems theory be adopted for explaining motor performance, skill acquisition and the development of pedagogical methods. within this theory, the individual is regarded as a complex system that functions within the interactions of many sub-systems. these interactions ‘self-organise’ according to a functional goal or intention in a particular environmental context and in relation to a variety of constraints that are relevant to a particular situation (davids, button & bennett 2008). researchers investigating motor control and learning of sport skills often follow newell’s model (figure 1). this model identifies three kinds of constraints that influence the organisation of movement performance. these include individual constraints, task constraints and environmental constraints (haywood & getchell 2009). following this model for athletes with physical disabilities (andrews 2014), their individual constraints, which can be either structural or functional constraints, coupled with their goal (to sprint as fast as possible), need to be ‘self-organised’ for their ultimate success. figure 1: newell’s model of the constraints that interact to shape motor performance. proficiency in this ‘self-organisation’ process has been attributed to the development of fundamental coordinative structures. these structures allow the individual to adapt their movement patterns to achieve goals within the variety of constraints that impact on the particular situation (davids et al. 2008; magill 2003). chow et al. (2008) advocated the use of newell’s model of three stages of motor learning to understand the progression from novice to expert. they linked these stages of motor skill learning to the progressive organisation and reorganisation of coordinative structures in response to changing constraints in movement performance situations. davids et al. (2008) described this process as the development of coordination in which learning and practise lead to strengthened connections among the coordinative structures involved in task goal achievement. as the coordination patterns increase in stability, the individual is more able to adapt to the changing constraints of tasks and environments. shumway-cook and woollacott (2007) described stable states as ‘well entrained systems’, referring to the reliability with which coordinated movement could be dynamically organised despite challenging performance circumstances. well entrained movements would be characterised by the optimal sequencing, timing and grading of muscle activation patterns. motor control and timing are linked. the goal of good timing is the optimal synchronisation of synergies (salman 2002). the running style of an elite sprinter is an example of a well entrained muscle activation pattern, as it is the manner in which these muscles are activated which gives the athlete their running style. furthermore, running style could be described as a stable system in which the sequencing, timing and grading of muscle activation associate in as attractor well that is resistant to disruption. practice activities that focus on optimising the sequencing, timing and grading of activation during sprint performance would be of interest to coaches and sprinters, if engaging in these activities produced an improvement in achieving the ultimate goal of sprinting – speed. one aspect of timing that has been identified as a control parameter for running is the rhythm entrained in the coordination pattern (miller 2011). rhythm was identified as a distinguishing characteristic of skilful performance and has been acknowledged to be a special type of timing that underlies the acquisition and performance of motor skills (ben-pazi, kukke & sanger 2007; derri et al. 2001). according to mastrokalou and hatziharistos (2007), rhythmic ability is based on an internal representation of time that affects the way in which movements are performed. hansen (2008) highlighted rhythm as a critical parameter in sprint performance. he explained that the optimal combination of stride frequency and stride length must be coordinated precisely during the different phases of a sprint. furthermore, inappropriate rhythm in any given phase could result in muscle tightness, over-striding, premature depletion of energy and many other performance limiters (hansen 2008). rhythm training programmes usually challenge individuals to synchronise their movements to an external rhythmic stimulus (zachopoulou et al. 2003). synchronisation has been improved in some individuals as a result of participation in a rhythm training programme (greenspan 2002). thus, this study aimed to investigate whether 6 weeks of timing and rhythmicity training by means of synchronised metronome training (smt) improves motor timing and rhythmicity. furthermore, this study aimed to investigate whether such effects of smt influence the kinematic variables of the sprint. materials and methods research design and sample a semi-quantitative analysis case study approach was used for this study (bartlett 2007). an elite male paralympic sprinter with a single below-knee amputation participated in this study. procedure kinematic data were gathered during the ‘train to compete’ stage of the periodisation plan within the athlete’s typical training regime (bhambhani & higgs 2011). data from two phases of the sprint, the initial acceleration phase and the maximal running velocity phase, were collected using video recorders, aligned perpendicular to the sprint. these data were then calculated and analysed using video software (dartfish prosuite version 4.0.9.0). following this, 6 weeks of timing and rhythmic training by means of smt intervention was completed. once this training was completed, kinematic investigation of the acceleration and maximal running velocity phases was gathered again, in order to see the potential effects of the smt training (figure 2). figure 2: scheme for the research design followed. this study used a very specific form of smt training: the interactive metronome™ (im). the underlying rationale for im™ training was that the processes of sequencing and coordinating movement patterns are based on an internal sense of rhythmicity and that this rhythmicity can be improved with practice to a metronome (koomer et al. 2000). the im™ is a computer-based program that combines hand and foot tasks with an auditory guidance system. this produces a sequence of interactive exercises in which the participant strives to synchronise the task performance (either hand or foot movements) precisely with the auditory signals. for this intervention, the participant came twice a week for a period of 6 weeks and completed all his training sessions as the first part of his warm-up for the athletic training. during im™ training, the environment where the training was being held was regulated. on arrival, the participant was fitted with a hand and foot tap pad, with which to respond to the computer-based auditory signal (the computerised metronome beat) via headphones (im™ mini headphones) that were fitted to the participant’s head. at the start of the programme, the participant was presented with specific tasks of tapping his hand, or foot, or both, in synchrony to the metronome beat. computerised guide sounds provided feedback (three different feedback signals were sounded, a ‘too early’, ‘too late’ or a ‘so right on’) to assist the participant to fine-tune his movements to the beat. this was performed to provide corrective information, which was either reinforced or encouraged to be adjusted in subsequent tasks (interactive metronome 2007). data analysis the semi-quantitative analysis involved the digital video analysis of the athlete’s kinematic data, using video software (dartfish prosuite version 4.0.9.0), for the initial acceleration and the maximal running velocity phases during a 60-m sprint. each variable (stride length and stride time) during each of these two phases of the sprint was calculated through the video analysis software and then compared over the two testing periods. deductions from these data were made and discussed. ethical consideration with regard to ethical considerations, permission to conduct this study was obtained from stellenbosch university’s research committee (ethics clearance number 233/2009). permission from the participant was sought before commencing with the research. all information was treated with the strictest confidentiality, and the identity of the participant was protected. personal information and names were not disclosed in the reporting of the findings. results a comparison between pretest and post-test scores using im™ precision timing is presented in figure 3. there was an improvement in the accuracy following the intervention period on tasks for the hands only, feet only, left side of the body, right side of the body as well as bilaterally. table 1 presents the total summary for all task repetitions (3810) in the programme, showing a 36.6% improvement in the precise timing of movements after completing the intervention programme. figure 3: accuracy improvements from the pretest evaluation to the post-test evaluation in the im™ training. table 1: pretest and post-test adjustment values and improvement following interactive metronome™ training. the influence of im™ training on the sprinting performance of this athlete can be identified within the differences between sprint kinematics reported for the pre-im test and post-im test. the learned effect is negated as he was an elite athlete and has completed countless sprints over his career, and therefore, any changes in the sprint kinematics could be attributed to the im™ training. in order to make this comparison clear, the presentation of these data in the following figures is limited to the performance indicators of time, stride length and stride frequency (as discussed in the studies by hay & reid 1988). the following trends can be noted after the im™ training for three of the key performance indicators during the acceleration phase: second stride length (always taken with his unaffected leg) appears to be more critical to sprint performance compared to the first stride length (always taken with prosthetic leg) for this athlete (figure 4). longer average stride lengths appear to be important for overall sprint performance (figure 5). stride frequency did not show to be an individually important factor in sprint performance (figure 6). no consistent changes to the sprint kinematics following the im™ training were seen. if im™ training had any influence on the initial acceleration phase, it would be the slight increase in stride frequency. this increase, when coupled with an above average stride length, might have a positive impact on time and sprint performance. figure 4: effect of the first two stride lengths within the acceleration phase, on time at 5 m. figure 5: effect of the average stride length within the acceleration phase, on time at 10 m. figure 6: effect of stride frequency within the acceleration phase, on time at 10 m. the following trends were noted after the im™ training for three of the key performance indicators during the maximal running velocity phase: longer average stride lengths appear to be important for overall sprint performance (figure 7). stride frequency did not show to be significantly important for sprint performance (figure 8). if im™ training had any affects, it was that of increasing stride length. this can be expected if this athlete’s coordination capacity improved, as was shown on the im™ training. this would thus lead to an improved time and sprint performance. figure 7: effect of the average stride length during 10 m of the maximal running velocity phase, on time. figure 8: effect of stride frequency during 10 m of the maximal running velocity phase, on time. discussion training programmes for timing and rhythmicity have been used in a variety of rehabilitation settings (haas, distenfeld & axen 1986; shumway-cook & woollacott 2007). however, studies showing the effect of timing and rhythmicity training on sport performance are limited (sommer & rönnqvist 2009). the present case study was conducted to describe the effect of smt on motor timing on the sprint kinematics in an elite paralympic below-knee amputee. this research found that motor timing and rhythmicity of the athlete improved following an smt programme, specifically im™ training. this finding is supported by previous research (koomer et al. 2000; sommer & rönnqvist 2009). however, this study found that, despite following the large improvements seen in the im™ performance (a 36.6% improvement), only very minimal improvements were seen in the actual motor performance (observed in the kinematic data). this is in contrast to previous research by libkuman, otani and steger (2002), who found that following an im™ training programme produced significant improvements in timing and rhythmicity, which in turn lead to observable improvements in the motor performance. diamond (2003) noted that im™ training contributes to a more efficient and consistent neural processing of muscle activation patterns. furthermore, myskja (2005) concluded that when movements become more rhythmically stable, a more optimal coordination of movement performance is achieved. this outcome would be advantageous to sprinters who are continuously striving for optimal efficiency and effectiveness in the execution of the coordination patterns that support the different phases of sprint performance (sommer & rönnqvist 2009). possible reasons why this has not been seen in the present case study might be related to the level of the athlete who in this instance was competing at the elite level (the train to compete stage) of the long-term athlete development model (bhambhani & higgs 2011). furthermore, this athlete might have maximised his motor programming and movement patterns through many years of sprinting experience (magill 2003). the optimal ages for skill development for able-bodied youth have been identified as 8–11 years of age for females and 9–13 years of age for males, based on peak height velocity estimates (bhambhani & higgs 2011). lastly, the im™ training might have been offered during the wrong training phase of this athlete’s periodisation programme (bompa & carrera 2005) and better results could be expected if the training had been conducted during this athlete’s ‘off-season’ (bompa & carrera 2005). conclusion a well-designed and carefully followed smt programme, like that provided by the im™, appears to produce improvements in timing and rhythmicity for participants. however, these improvements will not always be translated into sport-specific motor performance. numerous other factors should also be considered, such as training phases and age or experience of the participants. smt programmes claim that they can assist in improving timing and rhythmicity for all participants at all levels. however, to have a consistent, reliable and significant impact on participants, smt programmes should be followed by young participants in the more fundamental phases of their movement development. recommendations this study followed a single case. to make more meaningful recommendations a larger sample population would be ideal, but given the limited number of elite paralympic athletes, this was not feasible. however, some deductions can be made from this study, and it is recommended that coaches have young athletes or players follow smt programmes (like the im™) during their skill development phase. this will improve their timing and rhythmic abilities, thereby improving their coordination and motor sequencing, which will provide these young athletes or players with the ability to optimise their sport-specific motor performance (mastrokalou & hatziharistos 2007). acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions b.s.a. wrote this article from the data gathered in his phd study. all sections were guided and contributed on by his supervisor, e.s.b. references andrews, b.s., 2014, ‘sprinting kinematics of athletes with selected physical disabilities’, doctoral dissertation, viewed 27 january 2017, from http://scholar.sun.ac.za/handle/10019.1/86436 bartlett, r., 2007, introduction to sports biomechanics, routledge, abingdon. ben-pazi, h., kukke, s. & sanger, t.d., 2007, ‘poor penmanship in children correlates with abnormal rhythmic tapping: a broad functional temporal impairment’, journal of child neurology 22(5), 543–549. https://doi.org/10.1177/0883073807302610 bhambhani, y. & higgs, c., 2011, a supplement to: ‘canadian sport for life. training athletes with a physical 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1–9. https://doi.org/10.1177/088307380201700101 shumway-cook, a. & woollacott, m.h., 2007, motor control: translating research into clinical practise, 3rd edn., lippincott williams & wilkins, philadelphia. sommer, m. & rönnqvist, l., 2009, ‘improved motor-timing: effects of synchronized metronome training on golf shot accuracy’, journal of sports science and medicine 8, 648–656. zachopoulou, e., derri, v., chatzopoulos, d. & ellinoudis, t., 2003, ‘application of orff and dalcroze activities in preschool children: do they affect the level of rhythmic ability?’, the physical educator 60(2), 50–56. zucker, d.r., ruthazer, r., schmid, c.h., feuer, j.m., fischer, p.a., kieval, r.i. et al., 2006, ‘lessons learned combining n-of-1 trials to assess fibromyalgia therapies’, journal of rheumatology 33(10), 2069–2077. abstract introduction methods results discussion conclusions significance of the study acknowledgements references about the author(s) cosmos yarfi department of physiotherapy and rehabilitation sciences, school of allied health sciences, university of health and allied sciences, ghana evans y.k. ashigbi department of physiotherapy and rehabilitation sciences, school of allied health sciences, university of health and allied sciences, ghana emmanuel k. nakua department of population, family and reproductive health, school of medical sciences, kwame nkrumah university of science and technology, ghana citation yarfi, c., ashigbi, e.y.k. & nakua, e.k., 2017, ‘wheelchair accessibility to public buildings in the kumasi metropolis, ghana’, african journal of disability 6(0), a341. https://doi.org/10.4102/ajod.v6i0.341 original research wheelchair accessibility to public buildings in the kumasi metropolis, ghana cosmos yarfi, evans y.k. ashigbi, emmanuel k. nakua received: 12 nov. 2016; accepted: 21 june 2017; published: 28 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: accessibility implies making public places accessible to every individual, irrespective of his or her disability or special need, ensuring the integration of the wheelchair user into the society and thereby granting them the capability of participating in activities of daily living and ensuring equality in daily life. objective: this study was carried out to assess the accessibility of the physical infrastructures (public buildings) in the kumasi metropolis to wheelchairs after the passage of the ghanaian disability law (act 716, 2006). methods: eighty-four public buildings housing education facilities, health facilities, ministries, departments and agencies, sports and recreation, religious groups and banks were assessed. the routes, entrances, height of steps, grade of ramps, sinks, entrance to washrooms, toilets, urinals, automated teller machines and tellers’ counters were measured and computed. results: out of a total of 84 buildings assessed, only 34 (40.5%) of the buildings, 52.3% of the entrances and 87.4% of the routes of the buildings were accessible to wheelchair users. a total of 25% (13 out of 52) of the public buildings with more than one floor were fitted with elevators to connect the different levels of floors. conclusion: the results of this study show that public buildings in the kumasi metropolis are not wheelchair accessible. an important observation made during this study was that there is an intention to improve accessibility when buildings are being constructed or renovated, but there are no laid down guidelines as how to make the buildings accessible for wheelchair users. introduction disability is a functional or structural limitation within the individual caused by physical, mental or sensory impairment (driedger 1991). there are various groups of disabilities: the visually impaired, hearing impaired, cognitive impaired, speech disorders, intellectual and physical disabilities. disability is defined as any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for humanity (who 1980). thus, disability represents disturbance at the level of the person. in 1980, the world health organization classified disability using the international classification of impairment, disabilities and handicaps framework. the framework was revised in 2001 using the international classification of functioning to include three main components: body functions and structure, activities and participation and environmental factors (useh, moyo & munyonga 2001; who 2001). the definition of international classification of functioning is neutral to aetiology and emphasises function rather than the condition or disease. it also recognises the role of physical, social and environmental factors in affecting the outcome of disability. thus, the environmental barriers that are deliberately erected by ‘abled-bodied members’ of the society compound the plight of people with disabilities (pwd) as far as participation and inclusion into the mainstream are concerned. the social model sees ‘disability’ as the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers (oliver 2013). it therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others. a social model perspective does not deny the reality of impairment nor its impact on the individual. however, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity. the social model seeks to change society to accommodate people living with impairment; it does not seek to change persons with impairment to accommodate society. it supports the view that pwd have a right to fully participate as citizens on an equal basis with other members of the society (shakespeare 2006). the medical model of disability also affects the way disabled people think about themselves. society has for many years tended to treat pwd with pity and charity rather than as equals, entitled to the same comforts and benefits that society offer able-bodied citizens (healey 2005). when policymakers and managers think about disability in an individual way, they tend to concentrate their efforts on ‘compensating’ people with impairments for what is ‘wrong’ with their bodies by, for example, targeting ‘special’ benefits at them and providing segregated ‘special’ services for them (moyne 2012). many pwd internalise the negative message that all their problems stem from not having ‘normal’ bodies. pwd too can be led to believe that their impairments automatically prevent them from participating in social activities (moyne 2012). this attitude can make pwd less likely to challenge their exclusion from mainstream society. pwd inability to join in society is seen as a direct result of having impairment and not as the result of features of our society which can be changed. pwd do not want to be marginalised and shut out from the rest of society; instead, they want to be included where possible and given the same opportunities as everybody else to live and work as independently as possible. pwd are entitled to the same rights as all other human beings and to equal opportunities in the society in which they live. full participation means to take part in the social life and development of the communities in which they live (perese 2013). according to perese (2013), pwd have been stigmatised and victimised by prejudice, preventing them from assuming their rightful places in society. the rights and needs of pwd must therefore be considered in all spheres of planning and development of any nation. this means that everything must be done to eliminate physical or social barriers which prevent their full participation. pwd need an accessible physical and social environment with ramps and low height of steps to ambulate; therefore, an inaccessible environment is a major barrier that affects the ability to function as individuals and as members of their society. as a result of this, millions of children and adults in all parts of the world often face a life that is segregated and debased (enable un 1982). therefore, the physical environment should be designed and equipped to meet the needs of a wide range of the population and supports equality and full participation of every member of the society. the government, civil society organisations, the community and the organisations of pwd have the responsibility to help improve accessibility of wheelchairs to public buildings. when the government, civil society organisations and the community are to implement changes in accessibility of the built environment, pwd must contribute to its implementation (iwarsson & ståhl 2003), because they know best the barriers they face and can offer practical solutions (liverpool independent/integrated living project 1999; lomas 1998). it is estimated that about 650 million people in the world live with disabilities, representing 10% of the world’s population. eighty per cent of pwd live in the developing regions: africa, asia, latin america and the caribbean (driedger 1991). iezzoni et al. (2001) estimated that 19 million people had some mobility difficulty, and the rates of associated problems of mobility disability are higher among women (11.8%) than men (8.8%). approximately one out of every five americans has a disability (mcneil 1999) with the disability likely to be higher in the older population (raina et al. 1998). in scotland, approximately one in every seven people has a disability, and 70% of pwd are aged over 65 years (scottish disability rights commission 2002). there are about 6 million people with disability in the uk (mcgough 1994), and it has been estimated that in great britain as a whole, around one in four households contain at least one person with some form of disability and that around 70% of the pwd have some mobility difficulties (cobbold 1997). in africa, an estimated 60–80 million people are living with disabilities, representing about 40% of the continent’s population (driedger 1991). in ghana, the statistical service (2012) estimates the disability rate as 3% of the population. the three most prevalent types of disability in ghana include visual impairment, hearing impairment and physical disabilities (kuyini, alhassan & mahama 2011). methods study setting the study was carried out in the kumasi metropolis in the ashanti region of the republic of ghana. the ashanti region is the third largest of 10 administrative regions in ghana, occupying a total land surface of 24 389 square kilometres or 10.2% of the total land area of ghana. in terms of population, however, it is the most populated region with a population of 4 780 380 according to the 2010 population and housing census in ghana, accounting for 19.4% of ghana’s total population. kumasi, the metropolitan capital, is the second most populous and largest cosmopolitan city of ghana, the gateway to west africa, with a population of 1 170 270, accounting for almost a third of the region’s population. the major land uses that make up the metropolis are residential, commercial, industrial, educational, civic and culture, open spaces and circulation. currently, the population of kumasi is growing at an increasing rate with a growth rate of 5.47%, which is higher than the regional and national rates, and this stems from its vibrant commercial activities. the high rate of migration has also led to the emergence and construction of huge edifices and infrastructure, which raises the question of accessibility needs. the unique centrality of the city as a traversing point from all parts of the country makes it a special place for many to migrate to and a focal point for the establishment of companies and institutional infrastructure. the metropolitan assembly with its capital which also doubles as the regional capital has modern state of the art infrastructures housing second cycle institutions and institutions of higher learning which all have an accessibility concern for this study. research design the study was a descriptive cross-sectional survey to assess the accessibility of wheelchairs to public buildings in the kumasi metropolis of the ashanti region, ghana. a cross-sectional design was used because no hypothesis was stated, and the purpose of the study was descriptive in nature. it is a follow-up study with a sample of public buildings in the metropolis taken in order to make a representation of what happens to wheelchair accessibility in the metropolis. the study was conducted from september 2010 to february 2011. the abridged form of americans with disabilities act accessibility guidelines (adaag 1990) instrument was adopted as a tool for the data collection. there was no standard reference guideline for determining accessibility of buildings to wheelchair users in this environment, hence the use of the amended adaag on building. the adaag was adopted because it is the best international exemplar of best practices as far as accessibility for pwd is concerned. sampling sample size a total of 84 buildings were assessed: educational facilities, health facilities, ministries, departments and agencies (mdas), sport and recreational buildings, religious institutions and banks due to on the vital role they play in society. sampling procedures different sampling procedures were applied in selecting the different buildings or institutions for the study. the second cycle institutions, religious facilities and banks were randomly selected. this was done by placing the names of all the buildings involved on a folded paper in a bowl and picking them one after the other until the required number was reached. but buildings from sports and recreational facilities, tertiary and health institutions as well as mdas were purposively selected. data collection twenty-one managers of selected buildings were contacted for approval and consent to carry out the study at their facility after the study was explained to them. the managers and custodians of these buildings answered structured questionnaires on how accessible their buildings were their awareness level of the disability law and the guidelines they have put in place to make the buildings accessible to pwd. permission and consent to take the required measurements was also obtained from the appropriate authorities in charge of the buildings to be studied. the data were collected mainly by direct observation of the buildings for the presence of accessible ramps, elevators, routes and entrances. measurements of the routes, entrances, height of ramps and steps, height of sinks, urinals, water closets and toilets, automated teller machines (atms) and tellers’ counters were measured using tape measure. all entrances and connecting routes of buildings with multiple entry points were measured as well as some interior components of buildings in relation to accessibility. priority was given to public buildings that were constructed after the passage of the disability law in ghana (2006), to learn whether owners and occupiers of public buildings are taking steps to make their premises wheelchair accessible. the total time it took for the measurements to be taken was 45 min. the following measurements were taken and recorded to the nearest 0.1 centimetre: the entrance: the horizontal distance across the doorframe. the route: the horizontal distance between the edges of a corridor, passage and passageway. parking area: the presence or absence of reserved parking spaces for wheelchair users in public buildings. elevators: the presence or absence of elevators in buildings for wheelchair usage. height of steps: the vertical distance from the bottom to the top of a step or any elevated surface located along the route of entry. water closets and toilets: the presence or absence of water closets friendly for wheelchair users. sinks: the presence or absence of sinks usable by wheelchair users. public telephones: the presence or absence of telephones in public buildings. urinals: the presence or absence of urinals usable by wheelchair users. atms: the presence or absence of an atm that can be used by a person in a wheelchair. height of counters for tellers in banking halls: distance from the floor to the top of a tellers’ counter. height of ramp: the vertical distance from the bottom to the top of the ramp at the highest point. length of ramp: the distance between the beginning and the end of the base of a ramp. the grade of ramp is deduced by finding the ratio of the height and the length of the ramp, that is: accessibility, or otherwise, of each building was determined by comparing the measurements taken with the required dimensions as highlighted by an abridged form of the adaag. a building’s exterior accessibility was determined when at least an entrance and its linking route(s) were found accessible, and interior accessibility was determined if it conforms to the guidelines of the instrument used for the study (table 1). table 1: summary of required dimensions for wheelchair accessibility using an abridged form of the americans with disabilities act accessibility guidelines. tools for data collection tape measure, pens, digital camera and a structured questionnaire. data management and analysis the measurements done on the public buildings and the pictures and videos recorded were kept under lock and key. the data collected were cleaned and later organised by entering it into statistical package for social sciences (spss) for windows version 16.0. descriptive statistics of frequency tables and percentages were obtained to present the data. the data collected were kept in a safe cabinet for six months after the end of the research. ethical considerations ethical approval for the study was obtained from the committee on human research, publications and ethics of the kwame nkrumah university of science and technology, school of medical sciences. the managers of the public buildings were informed about the research and given consent forms to sign and confirm their readiness to be interviewed and allow measurements to be taken on their buildings. they were assured of the confidentiality of the information being sought. results a total of 84 public buildings that offered essential services such as education, health, mdas, sports and recreation, religious groups (churches and mosques) and banks were assessed. the distribution of the buildings among the essential services showed that 12, 47, 6, 5, 10 and 4 buildings were studied under health, education, mdas, sports and recreation, religious groups and banks, respectively. the results further showed that 446, 1236, 70, 149, 107 and 9 entrances of buildings were assessed under health, education, mdas, sports and recreation, religious groups and banks, respectively. table 2 shows that 236, 29, 25, 125, 39 and 7 routes were also studied under health, education, mdas, sports and recreation, religious groups and banks, respectively. table 2: distribution of buildings, entrances, and routes accessible to wheelchair users. a total of 11 (91.7%) out of 12 health, 16 (34%) out of 47 education, 2 (40%) out of 5 sports and recreation, 2 (20%) out of 10 religious and 3 (75%) out of 4 bank buildings were wheelchair accessible. none of the six buildings under mdas had wheelchair access. for the entrances of the buildings, 355 (79.6%) out of 446 health, 484 (39.2%) out of 1236 education, 15 (21.4%) out of 70 mdas, 102 (68.5%) out of 149 sports and recreation and 89 (83.2%) out of 107 religious buildings were wheelchair accessible. all nine (100%) entrances of banking halls were wheelchair accessible. the routes of buildings assessed recorded a 28 (96.6%) out of 29 health, 69 (55.2%) out of 125 sports and recreation and 6 (85.7%) out of 7 bank buildings were accessible to wheelchair users, whereas the routes in the education, mda and religious buildings recorded 100% accessibility to wheelchair users. in all, a total of 40.5%, 52.3% and 87.4% of buildings, entrances and routes, respectively, were wheelchair accessible as shown in table 2. a total of 52 public buildings representing 61.9% of the 84 buildings assessed had more than one floor. out of these 52 buildings, only 13 of them representing 25% had an elevator to connect the different levels of the buildings. the remaining 39 representing 75% were not fitted with elevators indicating that wheelchair users cannot access the other floors of the buildings. all 8 health buildings assessed with more than one floor had elevators for wheelchair access, and only 5 out of the 33 educational buildings were fitted with elevators. but none of the 11 mda, religious and sports and recreational buildings had elevators for wheelchair access as shown in table 3. table 3: distribution of buildings with more than one storey fitted with elevators. in all, a total of 137 entrances to washrooms representing 22.1%, 158 toilets and water closets representing 29.1%, 222 sinks representing 45%, 5 urinals representing 3% and 3 tellers’ counters representing 75% were accessible to wheelchair users. all the atms were accessible to wheelchair users as shown in table 4. table 4: distribution of washrooms, toilets, sinks, urinals, automated teller machines and tellers’ counters accessible to wheelchair users. a total of 21 managers and custodians of public buildings were interviewed on the accessibility concerns of their buildings. fourteen of the managers had plans to provide ramps when renovating their facility. only 6 of the managers of institutions have a written document to make their buildings wheelchair friendly, whereas 16 of the managers said they had plans to construct buildings that are wheelchair friendly. a total of 18 of the managers were aware of the disability act, whereas 10 of them were aware of sections 6 and 7 of the act. a total of 13 of the managers said they have wheelchair users visiting their facility. discussion the results showed that averagely one-third, that is, 34 out of the 84 buildings assessed, were accessible to wheelchair users. this study showed that physically challenged persons in kumasi who use wheelchairs to ambulate can only gain access to 40.5% of the public buildings which house facilities that provide services for health, education, mdas, sports and recreation, religious and banking needs. this study contradicts a similar study by hamzat and dada (2005), who reported just 20% of accessible public buildings to wheelchair users in ibadan, nigeria. the higher percentage of accessible buildings recorded in this study unlike the one reported by hamzat and dada could be attributable to the larger number of buildings (84) assessed in this study compared to the 38 buildings surveyed in the study by hamzat and dada. it could also be because of the awareness of disability issues by pwd themselves and their organised groups after the passage of the disability law in ghana, whereas in nigeria, there were no legislations governing disability issues at the time of the study. the results of the structural domains evaluated revealed that 52.3% of the entrances of public buildings were accessible to wheelchair users. this result contradicts a study by useh et al. (2001), who reported 71% accessibility for entrances into public buildings in the central business district of harare, zimbabwe, but agrees with a study by hamzat and dada (2005), who reported 50% entrance accessibility after a study to determine the wheelchair accessibility of public buildings in ibadan, nigeria. the low level of entrance accessibility recorded in this study as compared to the study by useh et al. could be accounted for by the high steps and thresholds along the entrances. these steps and thresholds could have been easily removed or levelled to ensure wheelchair access to these entrances. an alternative way of enhancing entrance accessibility is to provide ramps with grade not more than 1/12 as suggested in the adaag (1990) and widening the width of doorways. the study also recorded 87.4% of routes of public buildings accessible to wheelchair users. the results seen contradict a study by figoni et al. (1998) who reported 48% route accessibility and cardinal and spaziani (2003) who reported 58% route accessibility of physical fitness facilities. the fact that a higher percentage of the routes were within the required dimensions for wheelchair accessibility might have been coincidental, and not really meant to meet the needs of wheelchair users. because a large number of people make use of these public places, there was the need for wider routes to allow easy movement of human traffic before, during and after programmes organised in these public buildings. among the 52 buildings with more than one floor assessed, only 13 of the buildings representing 25% had an elevator to connect the different levels of floors. all 8 health buildings assessed were accessible to wheelchair users, whereas only 5 out of the 33 education buildings with more than one floor were fitted with an elevator but 2 of the elevators were not functioning. none of the buildings assessed under sports and recreation, mdas and religious groups with more than one floor were fitted with an elevator to connect the different floors. for the remaining 39 buildings, the wheelchair users would only be able to access the ground floors, and in some instances, these too were inaccessible because of high height of steps and threshold. this is in contradiction to the 83% accessibility of elevators in a study by useh et al. (2001) to evaluate accessibility of wheelchairs into public buildings in the central business district of harare, zimbabwe. the difference in these two particular results may be because of the fact that useh et al. assessed only 20 buildings as compared to the 84 buildings assessed in this study. moreover, in ghana, it is only obligatory for owners and occupiers of public buildings with more than four floors to provide elevators in their buildings, and this could have contributed to the low level of buildings with more than one floor fitted with elevators seen in this study. a total of 11 out of 12 buildings in the health sector representing 91.7% assessed were found to be wheelchair accessible. similarly, rimmer et al. (2005) also reported an appreciable level of accessibility (58.5%) of health facilities in 9 out of the 10 geographic regions in the united states. the higher level of accessibility in this study could be because of the fact that architects and construction engineers took into account the needs of patients visiting the hospitals that have mobility challenges and thus use wheelchairs for ambulation and need accessible ramps and facilities to easily manoeuvre their way inside the buildings. it could also be attributed to the fact of awareness creation since the passage of the disability law on the special needs of pwd in society. the low accessibility of buildings for educational purposes (34%) is suggestive of inappropriate architectural designs of such buildings. it appears that the major efforts of the owners were devoted to making these architectural structures masterpieces, with little or no consideration for individuals who are wheelchair-mobile. this could be a reason why pwd, in particular the wheelchair users, are not encouraged to be educated because of the obstacles they face in accessing buildings in the educational sector (christensen, blair & holt 2007). two out of the four (50%) school libraries measured in educational buildings were accessible. this implies that wheelchair-mobile students would have a 50% access chance to the libraries in the educational sector. this study contrasts a similar report by hamzat and dada (2005), who observed a low level of accessibility of buildings used for educational purposes (6.7%). this could be because of the fact that a higher number of buildings were assessed under the educational buildings (47) as opposed to the three buildings assessed by hamzat and dada’s study. the 0% accessibility of six buildings measured under mdas housing social welfare, immigration service, regional directorate of ghana health service, labour office and national vocational training institute implies that wheelchair-mobile citizens would not be able to access the services being provided by these government functionaries. this also means that wheelchair users would be hindered from visiting the buildings that serve the purposes of employment, social welfare, acquisition of passports and those seeking vocational training. it also implies that services provided by these departments would only probably reach the wheelchair users by indirect means, as these individuals would not be able to get to the location where these services are provided while in their wheelchairs. the alternative would be for such persons to be carried into these buildings; this act has a potentially negative psychological effect on the individual (pierce 1998). the sports and recreation buildings recorded 40% accessibility. one of the national sports stadia in the metropolis assessed accounted for the high incidence of accessibility under the sports and recreational centres. the sports stadium was constructed to suit the regulations of world football governing body, federation of international football associations (fifa), on accessibility. the implication of the low level of wheelchair accessibility recorded for the sports and recreational buildings is that wheelchair users would not be able to fully participate in all social and recreational activities which serve the purposes of relaxation, recreation and health promotion. this therefore denies pwd access to sport and recreational facilities and is a violation of article 30 of the united nations convention on the rights of pwd (uncrpd) which provides for the participation of pwd in cultural life, recreation, leisure and sport. section 5(b) of article 30 specifically obliges state parties to take appropriate measures: ‘to ensure that ‘pwds have an opportunity to organize, develop and participate in disability-specific sporting and recreational activities and, to this end, encourage the provision, on an equal basis with others, of appropriate instruction, training and resources.’ (uncrpd 2006:23) the benefits of outdoor recreation experiences are largely the same for people with and without disabilities (mcavoy & lais 1999). the low level of accessibility recorded under the religious buildings (20%) is indicative that the wheelchair-bound individual is limited or prevented from participating in most religious activities and worshipping his or her maker. none of the five buildings assessed under mosques were wheelchair accessible, whereas only two of the five church buildings were accessible to wheelchair users. the accessible church buildings were probably just a matter of coincidence and not a conscious effort of making them accessible. this low level of accessibility could be attributable to the religious view of disability in society that views pwd as having committed a wrong doing and that disability is the punishment for the offence committed (zedda 2008). the low level of accessibility of religious buildings to wheelchair users is also a violation of their freedom of religion as provided for in article 21(1)(c) of the 1992 ghanaian constitution. the buildings under the banking sector recorded an appreciable level of accessibility (75%). all the three private banks assessed were found to be accessible, whereas the only government bank was inaccessible to wheelchair users. the private banks were made accessible by renovating them to incorporate ramps that can easily be used by a wheelchair user. this could be because of the fact that the private banks are making their premises accessible to attract a large customer base and not because of meeting the special needs of the wheelchair user, for the ramp gradient does not follow the principles of universal design. the inaccessibility of the government bank buildings could be because of the lack of funds from central government for renovation purposes and the bureaucratic procedures to follow for renovations to be done on the buildings. wheelchair accessibility of entrance to washrooms, toilets, sinks and urinals were 22.6%, 26.4%, 52.9% and 5.6%, respectively, in new public buildings, whereas the entrance to washrooms, toilets and sinks of old public buildings recorded a 21.9%, 30.8% and 41.4% accessibility, respectively. the 26.4% and 30.8% toilet accessibility recorded in this study contradicts a similar study by useh et al. (2001) who reported 51% of toilet accessibility to wheelchair users into public buildings in the central business district of harare, zimbabwe. this study further showed that a wheelchair user will experience many difficulties entering the washrooms in most of the buildings assessed, let alone have access to the toilet facilities in the buildings. it was only some of the buildings under the health sector and baba yara sports stadium that had special toilet facilities for use by the wheelchair users. this could be because of the fact that the sports stadium needed to meet the world governing body (fifa) regulations on accessibility needs and it was not to meet the needs of the wheelchair users. none of the urinals in the buildings assessed were accessible to the wheelchair user. in the banking sector, all the four atms assessed were accessible (100%) to the wheelchair user, whereas 75% of the tellers’ counters were accessible to the wheelchair user. all the three private banks assessed were wheelchair accessible, while the only government bank assessed was inaccessible. there was an intention to make bank buildings wheelchair accessible by creating ramps during renovations of these banks. the provision of accessible links to the buildings in the banking sector may be a way of increasing their customer base to attract all manner of people to their premises and not to create an accessible environment for the wheelchair user. limitations of the study there was no standard reference guideline for determining accessibility of buildings to wheelchair users in this environment, hence the use of the amended adaag. there were unequal numbers of buildings assessed in the five essential services of the study because of inadequate buildings in some of the institutions. smaller sample size of 84 public buildings. recommendations there should be the development of a national building code using the principles of universal design to ensure all public buildings are accessible to all persons. there is the need for awareness raising around issues on removing and breaking physical barriers in society and provision of an accessible physical environment for every member of the society. this should be the responsibility of every citizen in the country, and the ghana federation of the disabled should team up with state institutions responsible for dissemination of information to reach a large proportion of the populace. there should be liaison between the end users (pwd) and various professionals (politicians, engineers, lawyers, architects, physiotherapists, disability management practitioners and occupational therapists) during the development of a framework for the construction of buildings in order to make them accessible to wheelchair users in ghana. this is because the end users know best the barriers they face and therefore will make meaningful contributions to the framework. the findings of this study indicate a great challenge to the aforementioned professionals. the national council for pwd that has an oversight responsibility on disability issues in ghana should liaise with the association of architects and contractors on the need and how to design and construct accessible public buildings in ghana. there is the need to set up a regulatory body that will have an oversight responsibility of all public buildings constructed in the country to make sure they are wheelchair accessible before sanction or approval is given for final construction. more attention should be paid in providing accessibility links during construction and renovation of public buildings, especially those of education, mdas, religious and sports or recreation buildings in kumasi and across the country. conclusions an important observation made during this study was that there is an intention to improve accessibility when buildings are being constructed or renovated. this study described how accessible public buildings should be to wheelchair users because the country has a disability law but lacks the requisite guidelines (legislative instrument and building codes) on how to make public buildings accessible to all. it was also realised that narrow entrances and routes of buildings, raised steps at entrances of the buildings and steep ramps rendered most of the buildings inaccessible to wheelchair users. there is the need for the ghanaian government to develop building codes and guidelines using universal design principles to ensure all public buildings are wheelchair accessible. this can be achieved by liaison between wheelchair users and various professionals (disability management practitioners, occupational therapists, physiotherapists, engineers and architects). it is important to increase the level of wheelchair accessibility to public buildings; this will facilitate independence, integration and reintegration of wheelchair users into the society. it will also ensure equity for all and thereby contribute to the achievement of the sustainable development goals in ghana. significance of the study the development of every nation evolves with the housing of its agencies, organisations and institutions to serve the general public. a building not accessible by persons with physical disability means they have been excluded as far as usage of the facility is concerned. in almost all societies of the world, major obstacles continue to hamper the development of pwd, thus preventing them from exercising their rights and freedom, making it especially difficult for them to participate fully in the activities of their societies. the results of this study will reflect the trend of accessibility of public buildings to wheelchair users in kumasi. the outcome of this research will be used as part of an advocacy for the enforcement of policy to guide appropriate mdas to ensure accessibility of self-propelling wheelchair users to all public places or buildings in the country. it is very important to look at the abilities, not the disabilities, of pwd, and create accessible environments for them to contribute their quota to national development and integrate the wheelchair user into the society by providing access to buildings. this study will help address the inadequacies of the disability law (2006) which talks about owners or occupiers of a place to which the public has access needing to provide appropriate facilities that make the place accessible to and available for use by a pwd without providing accessibility guidelines for owners and occupiers of such buildings to follow. this will ensure that all persons have the opportunity to secure suitable employment, participate in social and recreational activities, have access to healthcare services and acquire formal education. acknowledgements the authors are grateful to the managers of the public buildings who gave consent and allowed their premises to be used for the study and to all individuals with physical disability in ghana, especially the wheelchair users. competing interests the authors declare that they have no financial or personal relationships that may have appropriately influenced them in writing this article. authors’ contributions c.y. was the lead author and project leader, was responsible for data collection and cleaning of data and was part of the team that prepared the manuscript. e.y.k.a. was part of the team that prepared the manuscript, and he read through the research. e.k.n. analysed the data and was part of the team that prepared the manuscript. he also supervised the work as an msc thesis. references american with disability act accessibility guidelines (adaag), 1990, viewed 24 february 2010, from http://www.access-board.gov/adaag/html/adaa.htm cardinal, b.j. & spaziani, m.d., 2003, ‘americans with disability act compliance and the accessibility of physical activity facilities in western oregon’, american journal of health promotion 17, 197–201. christensen, k.m., blair, m.e. & holt, j.m., 2007, ‘the built 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handicaps: a manual of classification relating to the consequences of disease, who, geneva. world health organization (who), (2001). international classification of functioning, disability and health, world health organization, geneva, viewed 26 march 2011, from http://www3.who.int/icf/icftemplate.cfm zedda, m., 2008, models of disability: is the religious model still relevant today?, viewed 24 march 2011, from http://blog.wideaware.co.uk/archive/7/models-of-disability-is-the-religious-model-still-relevant-today.html abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) maritta zinhle department of public health, school of health care sciences, sefako makgatho health sciences university, pretoria, south africa mygirl p. lowane department of public health, school of health care sciences, sefako makgatho health sciences university, pretoria, south africa thembi v. simbeni department of public health, school of health care sciences, sefako makgatho health sciences university, pretoria, south africa citation zinhle, m., lowane, m.p. & simbeni, t.v., 2025, ‘experiences of pregnancy and motherhood among women with disabilities in the district of nkangala, mpumalanga province’, african journal of disability 14(0), a1765. https://doi.org/10.4102/ajod.v14i0.1765 original research experiences of pregnancy and motherhood among women with disabilities in the district of nkangala, mpumalanga province maritta zinhle, mygirl p. lowane, thembi v. simbeni received: 31 may 2025; accepted: 06 nov. 2025; published: 12 dec. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: experiences of pregnancy and motherhood needs among women with disabilities are not often discussed by families, communities, and even within healthcare facilities, resulting in their reproductive health needs being overlooked and inadequately supported. objectives: this study aimed to explore experiences of pregnancy and motherhood among women with disabilities within nkangala district, mpumalanga province. method: a qualitative, exploratory descriptive design was used among a sample of 10 women with disabilities who met the inclusion criteria. snowball sampling method was used to recruit participants, and the sample size was determined by data saturation. one-on-one in-depth interviews using an unstructured interview guide were used to collect data. results: analysis revealed seven major themes reflecting women’s experiences: unplanned pregnancy; mixed emotions including relief; decisions around pregnancy termination; support received during pregnancy and postpartum; attitudes of community members and healthcare professionals; difficulties in fulfilling motherly roles; and challenges of raising a child while with a disability. women who received consistent maternal care and strong family support were able to nurture and care effectively for their children. conclusion: the healthcare sector needs to improve policies related to the reproductive health of women with disabilities, how they are treated to reduce the stigma and the negative comments that healthcare workers make to this population group during pregnancy and motherhood. contribution: the study contributes to a deeper understanding of disability, promotes inclusion and challenges harmful conceptions. this knowledge can eventually improve maternal care, improve the results for mothers and children, and increase the social integration for women with disabilities. keywords: pregnancy; women; motherhood; disabilities; sexual reproductive health; social integration. introduction the global report on health equity for persons with disabilities estimates that the number of people with some form of disability is more than 1.3 billion, representing about 16% of the world’s population (pita et al. 2023). according to a global health survey, women with disabilities are 60% higher than men living with disabilities, and most of them are presenting with physical, mental, intellectual, and sensory disabilities (matin et al. 2021). because disabilities vary widely in type and complexity, the term disability is used differently across multiple contexts, such as legal frameworks, policy documents, clinical and educational settings, and everyday language (goldiner 2022). as a result, it serves multiple, and sometimes contested, functions, including guiding anti-discrimination classifications, determining eligibility for various benefits, and informing decisions about the provision of specific treatments (gillies 2024). despite widespread use of disability definitions, the term has no universally accepted meaning (goldiner 2022). however, jaiswal et al. (2024) indicated that the world health organization (who) has developed the international classification of functioning, disability and health (icf). the icf is a standardised framework for describing and measuring health and disability. it was adopted in 2001 by 191 who member states and became an international standard for describing ability, disability and measuring the performance in the following domains: impairments are problems in body function or alterations in body structure (e.g. paralysis, blindness, loss of a limb or memory loss). activity limitations are difficulties in executing activities (e.g. walking, eating, difficulty seeing, hearing or problem solving). participation restrictions are problems with involvement in any area of life (e.g. facing discrimination in employment, transportation, engaging in social and recreational activities and obtaining health care and preventative services). consequently, despite the different perspectives used to define disability, persons with disabilities generally share similar characteristics, namely, having functional limitations that may be affected or exacerbated by social, environmental, or human-made barriers (luyen 2022). access to sexual and reproductive health (srh) services and reproductive rights are also for all people with disabilities. individuals with disabilities are a distinctive group, and factors such as sex, age, gender identity, sexual orientation, religion, race, ethnicity, and socioeconomic status affect their experiences in life and their health needs (kim, park &namkung 2024; wiesel et al. 2024). women with disabilities have the same needs for srh as women without disabilities. in some instances, they are faced with physical, social, and attitudinal barriers in accessing community resources such as healthcare facilities, especially services of srh (rade et al. 2023). global evidence suggests that women with disabilities are faced with many challenges when accessing maternal health care. they are facing unique forms of stigma and discrimination arising from the intersection of being women, mothers, and people with disabilities (carew et al. 2024; nguyen 2020; nguyen, edwards & king 2023; shiwakoti et al. 2021). although women with disabilities face significant challenges during pregnancy and motherhood, many still view the experience as exceptional and deeply fulfilling (yu, lv & zhang 2025). a study by heideveld-gerritsen et al. (2021) and shaul, dowling and laden (2024) asserts that women with disabilities can fall pregnant and have the same longings to be a mother as non-disabled women. a large study of 10 718 women (us national survey of family growth) conducted from 2006 to 2010 demonstrated that women with or without disabilities have the same attitude, desires and intentions towards childbirth and motherhood (diamanti et al. 2021). even though some studies look at the healthcare experiences of women with physical disabilities, there is still very little research that fully explores what pregnancy and motherhood are like for women with disabilities (nguyen et al. 2023). thus, this study sought to answer the following research question: ‘what are the experiences of pregnancy and motherhood among women with disabilities within nkangala district, mpumalanga province?’ exploring the experiences of pregnancy and motherhood among women with disabilities is essential for informing interventions that are geared towards addressing the reproductive and sexual health needs of this population. research methods and design study design a qualitative, exploratory descriptive design was used to gain an in-depth understanding of the experiences that make women with disabilities to thrive or not to thrive during pregnancy using one-on-one in-depth interviews. study setting and population the study was conducted in one of the six municipalities (dr j.s. moroka) in nkangala district, mpumalanga province. dr j.s. moroka is one of the largest local municipalities in nkangala district, which offered an opportunity to access an adequate number of potential participants for this study. dr j.s. moroka local municipality is approximately 125.1 km northeast of pretoria. the target population in this study was women with disabilities of reproductive age (18–45 years), who have experienced pregnancy, and/or who are mothers residing in villages during data collection. inclusion and exclusion criteria participants with physical, visual, mental, and neurological disabilities were included. participants with mental disabilities in this study refer to women living with mental illness who are on medication and stable and who can able to clearly describe their experiences during the interview. the study excluded women with intellectual disability, communication difficulties, and hearing difficulties. sampling size sampling is the process or technique of selecting a suitable sample or a representative part of a population, for the purpose of determining the characteristics of the entire population (karunarathna et al. 2024). referred participants were recruited in the study and interviewed until data saturation was reached. the study achieved data saturation in eight interviews, and two additional interviews were done to ensure that there was no additional information emanating from the interviews. the researchers confirmed that there were no new ideas or information obtained from conversations with 10 participants (hossain, alam & ali 2024; rahimi 2024). sampling technique in this study, snowball sampling was used as the participants with the targeted characteristics were not easily found (khoury 2024). the first two participants who met the study’s criteria were accessed from the south african social security agency (sassa) pay points with the help of the sassa manager. after that, we asked these two participants to recommend other women with disabilities, and the potential participants were reached from their residences. data collection we collected data using an interview guide with open-ended questions. the method of data collection was one-on-one in-depth individual interviews. the interview guide was translated to isindebele and northern sotho as they are the most spoken languages in nkangala district. for each language translation, two independent translators who are fluent in the languages were employed to translate the tools. after the translation was done, the researchers facilitated each pair of translators to check each other’s translation and reach a consensus regarding the translation in maintaining the original meaning of questions in the tool. there were three main sections on the tool. the first section focused on the participants’ socio-demographic characteristics, the second section focused on experiences during pregnancy, and the last section focused on the experiences of motherhood. after obtaining the study ethical clearance and permissions from the department of social development, the researchers visited the offices of sassa in nkangala district to meet with facility manager for briefing. we presented the research purpose, the research data collection plan, and requested the space for interview in the facility. after all the logistics for data collection were addressed, we were ready to start with the recruitment. we met with those who agreed to participate and further explained the reason for the study. after the introductions, the researcher conducted information sessions with the participants to obtain informed consent. the participants were told that participation was voluntary and that withdrawal from the study could take place at any time without compromising the care they received from the facility. those who consented verbally to participate in the study were taken to one of the consulting rooms reserved for data collection. data were collected by the primary researcher in mmametlhake sassa office in dr j.s. moroka municipality and in the houses of other participants who felt comfortable conducting the interview in their houses. participants were interviewed every tuesday in one of the unused offices after they had completed their visit to sassa and others were interviewed in their homes in a room with no other people present. each interview lasted for approximately 30–45 min. the interviews were audio-recorded with the permission of the participants. data collection occurred from june 2024 to the end of august 2024. data analysis a voice recorder was used to record the interviews with the participants’ approval. we transcribed the audio-recorded interviews verbatim, and the transcripts were translated to english by a professional language translator. the translated transcripts were proofread in preparation for analysis. a thematic analysis approach was used, where codes are applied to text in the transcripts for the purpose of identifying patterns in the data (özden 2024). the first six transcripts were coded by each author independently, for comparison of their application of codes for intercoder reliability. a codebook with definitions was developed and it was used to code data consistently. the transcripts were imported into nvivo14 to organise the data and to further apply codes to the transcripts. the approach enabled us to identify patterns in the data and report the study’s findings. socio-demographic characteristics of the study participants were summarised in a table and described narratively. measures of trustworthiness trustworthiness or rigour of a study refers to ‘the degree of confidence in data, interpretation, and methods used to ensure the quality of a study’ (sabnis & wolgemuth 2024). the study’s credibility was enhanced by allowing participants to decline participation or withdraw from the study at any time. this was to ensure that data were collected from those willing to be part of the study so that they could provide the researcher with responses that truly reflected their experiences. an audio recorder was used when conducting interviews, and probes were used to encourage participants to give more details of their experiences. the researcher ensured dependability by providing detailed information about the methods used to collect data for the study. this allowed the readers to understand the methodology and repeat the study. transferability was ensured by providing details about the study setting so that other researchers could decide if the findings of the current study could apply in other circumstances. the researcher ensured confirmability by providing information based on the responses of the participants. bias interview bias refers to how the interviewers’ characteristics, questioning style, and responses can influence participants’ answers (ed. frey 2018). it is different from bias, which comes from the content or wording of questions. the researcher minimised interview bias by ensuring that she remained neutral when conducting interviews and not giving verbal or non-verbal cues. the participants’ answers were recorded and written verbatim. the researcher reduced respondent bias by maintaining a neutral facial expression to avoid making participants feel uncomfortable. they were asked to respond honestly and told that their responses would be kept confidential and anonymous so that they could give sufficient information. interviews were conducted in a language that the participants understood to avoid confusion and misinterpretation of the questions. ethical considerations the researcher sought ethical clearance from the sefako makgatho health sciences university research ethics committee. upon receiving a clearance certificate (smurec/h/389/2023:pg), a letter was sent to the research ethics committee of mpumalanga provincial department of health, nkangala district (department of health) and the managers of the sassa office in mmametlhake of dr j.s. moroka municipality, asking for permission to conduct a study. informed consent was obtained by giving participants an information sheet and a consent form to sign, upon agreeing to participate in the study. the researcher also explained the purpose of the study so that the participants could decide whether they wished to participate. the researcher ensured confidentiality by not discussing the participants’ experiences with other people. pseudonyms were used when analysing the data, and the document containing information gathered during data collection is protected by a password, saved on a laptop and stored for future reference. the researcher explained to the participants that there is no financial gain in agreeing to be part of the research and no favours would be given regarding the services provided in the sassa office. results according to the demographic profile, four participants were aged 19–28 years, another four were aged 31–37 years, and two were aged 42–44 years. six participants were born with a disability and four became disabled between 2010 and 2024. among the study participants, four had a physical disability, three had a mental disability and the other three had a visual disability. during data collection, seven participants were unemployed, one was doing an internship and two were employed. there were two participants with tertiary qualifications, five attended school to high school level and three attended primary school only. three participants were married, while seven participants were single. all the participants had children: two of them had one child, five had two children, two had three children and only one had four children. table 1 shows the demographic characteristics of women living with disability who have fallen pregnant and are mothers. table 1: socio-demographic characteristics. presenting the themes in this study, seven themes emerged: unplanned pregnancy; mixed emotions and a sense of relief about pregnancy; termination of pregnancy; receiving support during pregnancy and after giving birth; attitude from people and health care professionals; difficulty with fulfilling motherly roles; and raising a baby while living with disability. in addition, table 2 provides further definitions of the themes that emerged during data analysis. table 2: themes and definitions. theme 1: unplanned pregnancy four participants reported that falling pregnant was not planned and two participants reported that they did not think that they could fall pregnant as doctors told them that because of their disability they could not conceive. all the participants verbalised that pregnancy has changed how they view other disabled women when they are pregnant. the following are some quotations raised by the participants regarding falling pregnant: ‘my pregnancy was not planned; it was a mistake.’ (p2) ‘i did not plan to fall pregnant, and i did not think i would ever be pregnant as my doctor told me that the accident damaged my tubes.’ (p3) ‘i was not planning to fall pregnant because when i was hospitalised after the accident the doctor told me that i will never walk again and i will never conceive, therefore i was not using contraceptives because i did not think that i will fall pregnant.’ (p4) ‘i was still young, and i did not think that i will fall pregnant, i thought i will work first before falling pregnant.’ (p6) two other participants reported that they conceived through rape, and they did not love their babies; however, as time went by, they started loving their babies. they also reported that the perpetrators were not jailed, and they have forgiven them. theme 2: having mixed emotions and a sense of relief about the pregnancy four participants expressed that falling pregnant caused them to have mixed emotions and a sense of relief because the doctors told them that they would never have children because of their disabilities. they reported that falling pregnant made them feel like other women: ‘when i found out that i am pregnant i was shocked at first as i was told that i will never conceive, however as the time went by i felt relieved that i was able to conceive just like any other women.’ (p3) ‘i did not know that i am pregnant, but my partner kept on telling me that i am pregnant. when i did a pregnancy test it came out positive and i was so scared, i asked myself so many questions however as the time went by i accepted the pregnancy, and i was relieved as i was told that i will never conceive.’ (p4) ‘pregnancy was the last thing on my mind; i was shocked and happy at the same time.’ (p8) ‘after i was told that i will never walk again, i told myself that i will not have any more children as i had three children before the accident. i had mixed emotions upon finding out that i am pregnant because i thought it was going to be difficult to take care of a baby in my condition.’ (p10) theme 3: wished to terminate the pregnancy two participants who have had babies before, reported that they wanted to terminate their pregnancies: ‘i was not happy about the pregnancy i even told my husband that i do not like what is happening to me. i did not know what to do, i even suggested that i terminate the pregnancy however my husband said no. i ended up accepting the pregnancy.’ (p5) when i found out that i am pregnant, i went to the hospital because i wanted to terminate the pregnancy, but i was told that i have passed the termination period.’ (p1) four other participants mentioned that their family members were the ones who suggested termination of the pregnancy to them. although termination was suggested, none of the participants did it: ‘i did not tell anyone that i am pregnant, my sister noticed that i am pregnant when i started showing and she said i should go and terminate the pregnancy as i am bringing a burden to the family.’ (p8) ‘my dad was happy that i am pregnant, my aunt was surprised as i was told that i will never fall pregnant and my stepmother was not happy and suggested that i should terminate the pregnancy, but my dad refused.’ (p4) ‘the sister of the person who raped me noticed that i was pregnant and forced me to drink abortion pills, i was taken to seven different hospitals, and the nurses turned me back due to my disability. after failing to do the abortion at a healthcare facility, the sister of the culprit tried to do it at home by asking people to jump on top of my belly bump, it was still unsuccessful and when i gave birth my baby came out holding abortion pills.’ (p7) ‘my family did not care about me; my aunt advised me to terminate the pregnancy however my other aunt told me not to do it. as time went by i accepted the pregnancy.’ (p2) theme 4: receiving support during pregnancy and after giving birth five participants indicated that they had various support structures and people who assisted them during the pregnancy and after giving birth. these participants were supported by their grandmothers, mothers, partners, neighbours, and aunts. the following statements illustrate the support received by the participants: ‘my mom took care of me when i was pregnant, she used to make food for me and help me to bathe, she continued taking care of me and the baby after giving birth. my partner used to accompany me to the clinic as i am unable to walk while holding the baby because i am using two crutches.’ (p3) ‘my dad was incredibly supportive during my pregnancy and after giving birth. my partner used to accompany me to the clinic all the time. i have received so much support even from my partner’s family, my daughter is now staying with her grandmother.’ (p4) ‘my husband supported me so much, he used to accompany me to the clinic, and he was so hands on with the baby. my mother and my brother also assisted me with the baby after she was born and at times my mother would take her to the clinic, and i will get to rest a bit.’ (p5) ‘my family supported me throughout my pregnancy; they took care of me and did not want me to work hard. after giving birth my mother assisted me with the baby for the first three months, and she went back home. my nanny made things easy for me as she was assisting with taking care of the baby and she used to take her to the clinic.’ (p9) ‘i have a nanny who helped me so much with my baby and my husband was always available to assist with the baby where he can.’ (p10) four other participants reported that they did not receive any support from their family members during pregnancy and after giving birth. this could have been due to their family members being against their pregnancies as they deemed them not fit to have babies while living with disabilities. although these participants did not receive any support from their family members, they reported being able to manage to care for their babies; however, at times it was hard. one participant reported that her boyfriend was the only person who assisted her. theme 5: attitude from people and health care professionals women with disabilities face barriers when it comes to their fertility aspirations and motherhood. one participant reported that she experienced positive attitudes, and three other participants experienced negative attitudes from people when they noticed their pregnancy. this is alluded by the participants by the following excerpts: ‘my neighbour used to take care of me when i was pregnant and he was happy that i did not terminate the pregnancy, however my family used to shout at me and say i am mentally ill, yet i fell pregnant.’ (p1) ‘some of my family members and people from the society used to say why did i fall pregnant in my condition, how am i going to carry my baby while using two crutches.’ (p3) ‘my friend used to gossip about me and say i am using a wheelchair and pregnant, how am i going to take care of the baby. i was hurt by that statement.’ (p4) ‘my mother once told me that some lady was gossiping about me saying i have a toddler and now i am pregnant again while i am blind and my parents are blind.’ (p6) ‘people have negative comments when they see a disabled woman pregnant, they like saying we love men.’ (p7) ‘my neighbour asked me why i fell pregnant while i am a burden to my family.’ (p8) furthermore, two participants reported that they experienced negative attitudes from health care professionals when attending antenatal clinics and giving birth: ‘when visiting the clinic, the nurses used to say i fell pregnant while i am blind, what is my problem? the nurses did not treat me with respect; they used to make me want to fall pregnant while i am blind is a taboo.’ (p5) ‘when i went for my antenatal check-ups the nurses used to tell me that i did a good thing by falling pregnant, they were happy for me.’ (p10) theme 6: difficulty with fulfilling motherly roles although three participants indicated they were happy to be pregnant, they reported challenges when fulfilling maternal roles especially because they are using assistive devices to walk. some excerpts in this regard are as follows: ‘i am using two crutches to walk therefore it was difficult to carry my baby; i had to sit down if i wanted to carry him, bathe him and feed him. taking him to the clinic on my own was also difficult because i could not even push his stroller.’ (p3) ‘i started experiencing challenges as my baby was growing, she started being heavy and i could not carry her, bathe her nor dress her because i am using a wheelchair.’ (p4) ‘using a wheelchair made me not to be able to play with my baby up to my full satisfaction.’ (p10) three other participants indicated that, at times, it was difficult to take care of the baby, and they relied on their family members and/or partners for assistance. their families would help them with taking care of the baby such as bathing them, feeding them, taking them to the clinic, and doing their laundry. theme 7: raising a child while living with disability all the participants had different experiences of raising their children while living with disabilities. however, seven participants reported they had challenges and needed assistance to care for their children. regardless of the challenges, they reported that their children gave them a sense of joy and fulfilment: ‘being a mother is nice, and i enjoy it. when my baby was born it was a challenge taking care of him because my family used to make things difficult for me and at times they would hide food from us. i take my children as the greatest blessing because now the eldest one assists me with house chores.’ (p1) ‘motherhood is amazing, i look at my baby and feel blessed. my disability did not hinder me from being a mother. my husband and my nanny helped me a lot in raising my baby.’ (p10) the participants reported that motherhood is challenging, especially when living with a disability because you cannot do everything that you want for the baby; they have to rely on their family members to help them. one participant reported that she is no longer staying with her daughter due to the inability to fulfil all the maternal roles. she reported that it is heartbreaking that she cannot stay with her daughter due to her condition. three other participants reported that they did not encounter any challenges as they were able to do things for their children without needing any assistance. discussion this study explored the experiences of women living with disabilities regarding their pregnancies and motherhood. this discussion focused on the themes emerged during data analysis. participants in this study were initially shocked when they found out they were pregnant. participants reported that they did not plan to become pregnant, while others reported that physicians told them that women with disabilities have difficulty conceiving and giving birth due to the nature of disabilities. the association between disability and infertility remains uncertain, as few studies have examined the risk of infertility in women with and without disabilities (ha & martinez 2021). but the research from the 2011–2015 national family growth survey shows that women with disabilities experience a significant decrease in fertility rates (ha & martinez 2021). advances in reproductive healthcare have increased the desire and intention of women with disabilities to have children; however, they remain at a higher risk of adverse pregnancy outcomes (tarasoff et al. 2020). although the results of this study revealed shock among participants because of their belief that they could not conceive, they felt happy and relieved that they could have children like other women without disabilities and thus gave them a feeling of fulfilment. the study reported that some participants became pregnant because they were sexually abused, which meant that pregnancy was not desired or planned. this is supported by literature where it was identified that an estimated 39.9% of women with disabilities had experienced sexual abuse, and that they were four times more likely to be abused throughout their lives (ledingham, wright & mitra 2022). although this study did not investigate why they were sexually assaulted, and the reason why persons with disabilities were at greater risk of sexual abuse, literature suggests that it might be because of an increased perceived vulnerability, decreased knowledge of sexual education, especially on sexual safety and sexual rights (chopin, beauregard & deslauriers-varin 2024; gülay & eratay 2024; ledingham et al. 2022). the findings of this study also indicate that participants had mixed emotions and a sense of relief about pregnancy. they stated that being pregnant while living with a disability shocked them as they thought they could not conceive. in turn, they felt fulfilled by knowing that they were able to conceive and taking care of their children like other women. this is supported by morais, moreira, and costa (2024), who found that people with disabilities recognise the right of women with disabilities to motherhood and believe they should have the same sexual and reproductive rights as others, including the right to preserve fertility. while some participants reported a sense of relief when they found out that they were pregnant, others reported that they wanted to terminate the pregnancy. some reported that their family members tried to persuade them to terminate the pregnancy; however, none of the participants terminated their pregnancy. this is in agreement with the findings of a study conducted by shpigelman and bar (2023) where pregnant women with disabilities in this study reported that were strongly urged by their families and healthcare providers to have abortions and avoid conceiving in future. autonomy over reproductive choices requires a combination of knowledge, access to healthcare, understanding of consent, and the ability to communicate decisions with others. on the contrary, systems and services must actively provide women with disabilities with a means of making reproductive health decisions and decisions about pregnancy and motherhood (vallury, tucker & sheeran 2025). participants in this study reported that, although they were convinced to end pregnancy, they exercised reproductive rights, not to end pregnancy, but to prepare for childbirth and motherhood. participants in this study highlighted various forms of support received during pregnancy and birth. they reported to have received support from family members, partners, and neighbours during and after birth. this is supported by the study by commodari la rosa and nania (2022) which indicated that mothers living with disabilities received adequate support from family and friends during pregnancy and after giving birth. however, some of the women in the study reported that they went through a pregnancy alone and raised their children without any help, rather than being shouted at for being pregnant while living with disabilities. women with disabilities face numerous obstacles to achieving sexual health, including stigma related to disability and sexuality (carew et al. 2024). although rights of disabled people have improved in recent years, they continue to suffer many hardships including being stigmatised (lanzarotti et al. 2024). stigma affects disabled women during pregnancy, particularly through the components of social beliefs, stereotypes, and attitudes. people living with disabilities are therefore vulnerable to a lack of self-confidence and self-efficacy and to an increase in depression, abuse, neglect, exclusion, and exploitation. on the other hand, stigma influences the acceptance of cultural and social norms and creates misunderstandings that can limit women’s ability to access reproductive health services (carew et al. 2024; lanzarotti et al. 2024). another interesting finding concerns the attitudes of people and health care professionals towards women living with disabilities during pregnancy. participants highlighted that they experienced both positive and negative attitudes. the negative attitudes outweigh the positives, as people made comments that suggest that these women are incapable of taking care of a baby because of their disabilities. in many cases, nurses are often skeptical about the ability of women with disabilities to become pregnant and care for children. as a result, they tend to focus more on the disability itself than on the women’s maternal capacities during pregnancy and postpartum care (commodari et al. 2022). as women with disabilities are increasing and more become pregnant, it is crucial to ensure that they receive acceptable and high-quality maternity care (blair et al. 2022). this study found that some participants found it difficult to take care of their children. however, they had to rely on family or partner’s help. due to their disability, they found it difficult to carry a baby while walking with crutches or using wheelchair. some said that they depended on their family members to bath and feed their children. however, some participants reported that they were able to do everything for their children. a study by shpigelman and bar (2023) revealed that adults with disabilities perceive support from family members as excessive protection, affecting their ability to make their own decisions in various areas of parenting. furthermore, the same study found that women with disabilities felt that when family members assisted with childcare, it undermined their experience as mothers, leading to increased frustration and reduced self-efficacy and self-esteem (shpigelman & bar 2023). little is known about the positive experience of mothers with disabilities. (heideveld-gerritsen et al. 2021). motherhood is generally regarded as an essential element of women’s identity, and disabled mothers suggest that family support along the pregnancy, delivery, and parenting journey can help in raising their children in the community space (shpigelman & bar 2023). implications of the study women with disabilities have the rights of motherhood and pregnancy. however, it is not always recognised as a right, especially by family and society. women with disabilities deserve the same respect and dignity as non-disabled women without questioning their choices in sexual and reproductive life. the maternal and childbirth experiences of this group are often overlooked and rarely discussed. therefore, healthcare providers should prioritise this issue to raise awareness among women living with disabilities. the lack of support during pregnancy and after birth has serious impacts on disabled women; therefore, emotional and psychological support is needed in this population. this is particularly important in rural areas, where communities are often unaware of the reproductive health needs for women with disabilities. raising awareness can help reduce the stigma and discrimination they face during pregnancy with disabilities can also have normal babies, which means that people should not be judgemental. furthermore, depending on the severity of the disability, these women can still meet the needs of their children, while other women need minimal to moderate support. women with disabilities are exposed to negative attitudes in society and by health professionals. therefore, more research is needed to focus on intervention and implementation of solutions to address or reduce negative attitudes towards women living with disabilities during pregnancy and child-rearing. limitations of the study this study has certain limitations. as it was conducted in a single rural district, the findings may not be transferable to women with disabilities living in urban settings or other regions with diverse cultural or healthcare contexts. the study relied on participants’ self-reported experiences, which may be influenced by recall or social desirability bias. however, efforts were made to ensure credibility through prolonged engagement with participants, triangulation of data sources, and verbatim transcription. future studies could explore similar experiences in diverse settings to enhance the transferability of findings. recommendations many women with disabilities have limited knowledge of reproductive health. healthcare providers should prioritise this area and strengthen their capacity to offer inclusive antenatal and postnatal care. it is recommended that programmes supporting women with disabilities during pregnancy and after birth should be strengthened to raise awareness of society in general, and policymakers should protect women with disabilities during pregnancy so that they are not stigmatised and rejected. women with disabilities face the challenges of mental health more in pregnancy and childbirth, and it is important to also take into account their mental health status during maternal care. women with disabilities must also express their challenges and situations so that needed support can be provided. conclusion the key findings of the study indicate that the women interviewed did not plan to become pregnant, as they felt their disabilities prevented them from being allowed to have children. however most have welcomed and accepted the pregnancy and the status of being mothers. the data show that when participants realised that they were pregnant, they were initially shocked, which changed their perspective on women with disabilities. the results show that women with disabilities have been given adequate support during pregnancy, birth and childcare. however, the other participants did not receive any support but were able to care for their children and even ignored the call to end pregnancy. some women have reported sexual abuse, which has led to pregnancy. furthermore, the study showed that participants faced negative attitudes from community members, and nurses felt that they had made a mistake by being pregnant while living with disabilities. participants highlighted some difficulties in raising children. however, they also reported that being a mother is fulfilling their desire to be parents even though they are living with disabilities. acknowledgements we, the authors, would like to thank all mothers who participated in the study and the sassa manager. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. credit authorship contribution maritta zinhle: conceptualisation, investigation, methodology, writing – original draft. mygirl p. lowane: conceptualisation, formal analysis, supervision, writing – review & editing. thembi v. simbeni: methodology, supervision, writing – review & editing. all authors reviewed the article, contributed to the discussion of results, approved the final version for submission and publication, and take responsibility for the integrity of its findings. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the information captured during interviews and analysed are all applied in the result section of this article. thus the authors confirm that the data supporting the findings of this study are available within the article and available from the corresponding author, mygirl p. lowane, upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for 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physical disabilities? an exploratory qualitative study based on the narratives of women with disabilities in rural china’, journal of child and family studies 34, 1555–1565. https://doi.org/10.1007/s10826-025-03076-1 abstract introduction methodology conclusion recommendations acknowledgements references about the author(s) suegnet smit school of psycho-social education, faculty of education sciences, north-west university, potchefstroom, south africa lynn d. preston school of psycho-social education, faculty of education sciences, north-west university, potchefstroom, south africa johnnie hay school of psycho-social education, faculty of education, north-west university, vanderbijlpark, south africa citation smit, s., preston, l.d. & hay, j., 2020, ‘the development of education for learners with diverse learning needs in the south african context: a bio-ecological systems analysis’, african journal of disability 9(0), a670. https://doi.org/10.4102/ajod.v9i0.670 original research the development of education for learners with diverse learning needs in the south african context: a bio-ecological systems analysis suegnet smit, lynn d. preston, johnnie hay received: 26 july 2019; accepted: 09 oct. 2019; published: 10 feb. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: prior to 1994, special education in south africa was marginalised and fragmented; therefore, the new democratic government promoted inclusive education as a means to transform education in general and diverse education in particular. however, transformation in diverse education is seemingly moving forward at a snail’s pace – too slow to benefit all learners experiencing barriers to learning and development. objectives: this article serves a dual purpose: firstly, to apply a bio-ecological approach to highlight the historic development of diverse education and, secondly, to explore the interactive processes within the systemic levels in the south african education system, which affects the learner on the person dimension of the bio-ecological approach. method: a document analysis approach was utilised to collect information by exploring a large body of research literature, which included academic articles, reports, policies and policy reviews. data were categorised within the systems of the bio-ecological model to determine successes and challenges at each level. results: results from the bio-ecological systems analysis of related literature revealed not only many successes but also many challenges that inhibit change, growth and development in the south african education system, even more so for children experiencing barriers to learning. conclusion: the transformation process of change from what was to what should be, regarding diverse education, seems to be stuck at what is and not moving forward to what could be. it has not transformed significantly enough to fill the gap between reality and the envisaged aim or dream of quality education for all. keywords: special education; challenges; diversity; inclusive education; bio-ecological systems analysis. introduction worldwide, the implementation of inclusive education (ie) has been problematic (berlach & chambers 2011) and south africa (sa) is no exception. education for learners with diverse educational needs, embedded within the inclusive model (du plessis 2013), is still not conforming to the expectations envisaged in the education white paper 6 (ewp6) (department of education [doe] 2001) concerning equal education for all (engelbrecht et al. 2016). by creating opportunities for effective learning, the constitutional right of every child of schoolgoing age in sa (geldenhuys & wevers 2013; pillay & di terlizzi 2009), including learners with barriers to learning and development (doe 2001), can be addressed. the department of basic education (dbe [formerly doe]) states that its goal is to minimise, remove and prevent barriers to learning and development in the educational settings by attending to the unique needs of the individual learner (doe 2001). this can be achieved by early identification and addressing the diverse needs of learners. however, the gap between reality and this ideal of ie cannot be bridged (engelbrecht et al. 2016). despite the commitment of the department to take responsibility to create equal opportunities for all learners (doe 2001) and sustain effective learning in schools, general education remains poor (donohue & bornman 2014), with the process of change being slow (reddy, juan & meyiwa 2013). in sa, as the world over, attempts to minimise exclusion are ineffective, resulting in exclusion being more evident than ever (kaur & arora 2014). twenty-four years into democracy, sa still cannot claim that all learners profit from quality education and service provision contrary to the vision of the government to correct inequalities (dreyer 2017). the lack of appropriate service provision by the dbe impedes and obstructs its own set benchmarks for educational reform initiatives and generates even greater challenges (du toit & forlin 2009). this situation evolves into what is described by donohue and bornman (2014:1) as a ‘crisis in education’, which influences the realisation of ie and jeopardises its success (nel, nel & hugo 2012). this brings about the question that guided this research, namely, from a bio-ecological perspective: which successes and challenges contribute to the current state of education for learners experiencing barriers to learning? methodology the literature review included a search through academic articles, academic books, policies and reports on special education in sa, and ie in sa and the world over. sources that did not address the history of special education, prior to and post-1994 diverse education, or the bio-ecological model, were eliminated. keywords used for the search included ‘special education in the south african context (and the world over)’, ‘special needs education’, ‘diversity in education’, ‘dbe policy documents’, ‘dbe reports’, ‘problems in special education’, ‘challenges in special education’, ‘ie’, and ‘implementation of ie’ – or a combination of the above-mentioned keywords. a bio-ecological systems perspective: a person system within a contextual system the inclusive approach is ‘consistent with a systemic and developmental approach to understanding problems and planning action’ (doe 2001:19). bronfenbrenner’s bio-ecological process–person–context–time (ppct) model (bronfenbrenner & morris 1998) provides a comprehensive framework reflecting both the systemic and developmental dimensions, making this model useful for the classification of phenomena related to the person–context interaction (griffore & phenice 2016). thus, the ppct model will serve as a theoretical framework based on which the various conceptions in the study can be explained and qualified. this framework facilitates the systemic explanation of the complex reciprocal interactions and proximal processes between the individual and the layers of systems involved in diverse education (zimmerman & kontosh 2007). the process dimension in the ppct model is at the core of the model and represents dual interactions between the person dimension (the individual) and the context dimension (the layers of environments) in a time dimension (a period of time). this core initiates and sustains human development. in the process dimension, the specific forms of interactions within the time period of the proximal processes have the capacity to directly or indirectly impact human development, resulting in the physical, biological, psychological, social and/or cultural development of the individual within systemic contexts (bronfenbrenner & morris 1998, 2006). furthermore, internal and external reciprocal interacting factors between the processes of human development and the systems result in change, growth and development or stagnation, withering and underdevelopment for both the individual and the systems (bronfenbrenner & morris 1998). proximal processes extend to multifaceted relationships and interactions between the individual’s personal and interpersonal processes, other individuals, objects or symbols. these proximal processes occur in the immediate environment and relate mostly to the micro environment (swart & pettipher 2016). for the processes to activate and sustain development (bronfenbrenner & ceci 1994), regular occurrence of specific events over a period of time is a prerequisite (jackson et al. 2006). the capacities of the proximal processes are determined by personal inherent qualities or characteristics (see figure 1), as well as both the direct and distant environments (bronfenbrenner & morris 1998, 2006). personal inherent qualities, such as attributes of the individual, interact with each other. these qualities are determined by force, resource and demand characteristics that directly influence the proximal processes in order to either support or interrupt development. force characteristics include aspects such as temperaments and personalities that activate and support proximal processes, for example, motivation and persistence, or characteristics that unsettle proximal processes, such as impulsivity, distractibility and aggression (swart & pettipher 2016; zimmerman & kontosh 2007). figure 1: the application of the process–person–context–time in child development. in addition, force characteristics (locus of control and self-control) encompass the belief systems of the individual in relation to the larger systems (jackson et al. 2006). resource characteristics determine whether an individual is able to interact successfully during the proximal processes. resources are defined as biopsychological developmental assets (abilities, knowledge, skills, experiences and social and material resources) or developmental liabilities (genetic deficits, physical impairments and damage to brain function) (jackson et al. 2006). demand characteristics are actions that initiate or depress reactions from the social environment (swart & pettipher 2016) to enable or interrupt proximal processes, for example, ‘age, gender, skin colour and physical appearance’ (tudge et al. 2009:200). the context dimension in the ppct model refers to the direct and distant environmental levels that influence the learner’s life directly or indirectly and assist or constrain the proximal processes. features such as political climate, policies and attitudes (jackson et al. 2006) are good examples of influences on the proximal process regarding the context dimension. levels in the direct and distant environments comprise the micro, meso, exo and macro systems that function within a chrono system. the micro system includes the direct or immediate environment of the individual; the meso system embodies the linking interactions between one or more micro systems enclosing the developing individual. the exo system is the larger social system that involves the connections and processes between two or more settings where at least one does not encompass the developing individual (bronfenbrenner & ceci 1994). the macro system as the outermost layer comprises cultural values, customs and laws (berk 2000). the environments function within the time dimension of the ppct, capturing the changes and duration of the interactions between all the above-mentioned systems (geldenhuys & wevers 2013). this can be reflected in the changes in structure of education for learners experiencing barriers to learning. individuals and groups in different levels of environments link through changing, interdependent and interacting relationships (onwuegbuzie, collins & frels 2013). the interdependence that exists between organisms and their physical environment should be considered holistically in order to understand how each system and sub-system contribute to the support and sustainment of the larger system (donald, lazarus & moolla 2014). events in one part of a system affect other systems, demonstrating the reciprocal nature of the relationships, often influencing the whole larger system (bronfenbrenner & ceci 1994). from special education (prior to 1994) to education for learners experiencing barriers to learning (post-1994) history enables us to consider events from the past and to reveal their influence on the management of current capabilities or problems within the educational system. in addition, history also highlights the importance of the nature of social interactions between education and other systems, which creates a holistic approach to teaching and learning (donald et al. 2014). therefore, analysing the contextual factors of an education system assists in understanding the nature, structure and functioning of the education system in two historic timeframes (prior to and post-1994). because a systems theory approach such as the ppct model can accommodate changes in any dimension of the model (zimmerman & kontosh 2007), it has become the model of choice. contextual factors empower or prevent an educational system from ‘moving forward’. contextual factors can, firstly, be historic in nature; secondly, relate to the communal relationships between layers in contexts; and, thirdly, concern the governance of an educational system (steyn et al. 2017). although the bio-ecological model was not a consideration in education practices before 1994, the social model of disabilities (bronfenbrenner 1979) gained recognition; however, it lacked recognition of the person characteristics (swart & pettipher 2016). the discussion of both the preand post-apartheid era education for learners experiencing barriers will be based on the ppct perspective to reveal the effect on the learner within the person dimension. the two eras in history represent different time dimensions in the history of the education system in sa, specifically education for learners experiencing barriers to learning. with the move towards the inclusive model, the applicability of the ppct model (bronfenbrenner & morris 1998) is pertinent in explaining the successes and challenges that contributed to the current state of education for learners with diverse educational needs. for the purpose of this article, the person dimension is reflected in the learner experiencing barriers, requiring diverse education. the context dimension represents the environmental levels in which the education system and sub-systems, directly or indirectly, influence the education of the learner, assisting or constraining proximal processes. special education prior to 1994 viewed from a bio-ecological systems perspective from a ppct perspective, considering the reciprocal interactive proximal processes between the person dimension and the context dimension for the macro and exo levels (bronfenbrenner & morris 2006), there was no equality in the education system. past laws and legislations were marginalising and discriminatory (engelbrecht 2018), limiting or erasing any forms of equality. prior to 1994, the education system in sa was characterised by inequity, separate development, fragmentation, lack of transparency and lack of clarity in policy (doe 1997). furthermore, the ideology and belief system of that era influenced and mirrored inequality in the systemic layers (rosa & tudge 2013) of the south african education system. in 1910, when the union of sa was founded, no uniform national education system existed and each province (exo level) had its own education system. at this exo level, fragmented education departments, the lack of support provision and the lack of education in the mother tongue resulted in the exclusion of learners and for learners with barriers to learning to an even greater extent (doe 1997). according to the constitution of that time, the medium of instruction was dutch, which was later replaced with afrikaans and english. education reached only few learners of the black population (fataar 1997) and ignored the african culture (mphahlele & mminele 1997 cited in steyn et al. 2017). moreover, the social context of separate development and the exclusion of learners led to limited access to support and resources for many (pillay & di terlizzi 2009), and also isolation, bringing about contextual disadvantage and multiple social problems (donald et al. 2014; dreyer 2015). this influenced the interactions between micro systems in the meso system within the south african educational system. at the exo level, special education (se) was overseen by each provincial education department (steyn et al. 2017). this resulted in a fragmented education system exacerbated by uneven access to se and distribution of resources (doe 1997). in the meso system, both psychosocial features and physical context contribute to underlying proximal processes (krishnan 2010) between the micro systems involved with the learner. the absence of the learner from school (micro), because of exclusion and/or placement policies (macro and exo), meant that the school experience, as an agent in proximal processes, was non-existent. this inhibited factors such as ability, experience, knowledge and skills development in a school environment (micro) from contributing to interactive proximal processes (bronfenbrenner & morris 1998, 2006). engeström (2016) explains in the activity-theoretical approach to developmental research that the lack of mediation of mental processes in the teaching and learning environment restricts conveyance and increase of knowledge and skills, leading to undesired outcomes. furthermore, the ‘disability’ versus ‘normal’ classification according to the medical deficit model (swart & pettipher 2016) labelled learners. the term ‘disability’ (swart & pettipher 2016) had a narrow scope of se needs because the environmental influences as contributing factors to barriers to learning were not considered. white learners with special needs had access to more specialised interventions and better resources, resulting in the neglect of providing support services to the majority of the black population (doe 1997). this situation of separate development and support in se continued until 1994 (steyn et al. 2017). accepting that the medical model matched the era, the move towards the social model highlighted the fact that the first mentioned model did not adequately consider the cultural, social, economic, political and psychological systems’ influences on the individual (nel 2013). when viewed from a ppct perspective, the medical model falls short of demonstrating the complex reciprocal interactions and interrelationships (swart & pettipher 2016) that take place in the contexts (extrinsic barriers) of the education system by focussing only on the intrinsic barriers of the learner. in a ‘one fits all’ approach to remedial intervention (du plessis 2013), personal and interpersonal processes (jackson et al. 2006) (see figure 1) were not fully explored; therefore, some learners did not develop to their full potential. this past approach contradicts the current holistic view to intervention (department of basic education [dbe] 2014), where support is individualistic (the individual support programme [isp]) and uniquely tailored. considering the school as the micro level, the medical model of disability based evaluations on medical testing (ferguson 2008). medical professionals, therapists, specialists and remedial teachers provided remedial intervention (pillay & di terlizzi 2009). furthermore, teaching and learning were teacher-centric, using direct teaching methods (schunk 2012). interventions highlighted what the learner lacked and did not concentrate on the person or context characteristics and/or assets (king & madsen 2007), or learner strengths, advocated by ewp6 (doe 2001). bronfenbrenner and morris (2006) state that human development should not only be perceived objectively, but also include an experiential or activity element (engeström 2016), whereby the learner perceives the environment through personal feelings or opinions, resulting in the learner becoming an active participant in his or her own development. thus, the learner should have been participating in constructing the micro environment through person–context interactions (bronfenbrenner & morris 2006). yet, in past cases, where the personal attributes of the learner were ignored, retaining the learner and keeping the learner dependent (maguvhe 2015) on other individuals and systems resulted in slowing down or the stagnation of ‘change’, ‘growth’ and ‘development’. in turn, the development of person characteristics was constrained and person–context interactions gradually became dysfunctional (bronfenbrenner & evans 2000). this implies that the past education system did not consider a holistic approach in addressing learners’ needs and although there was development of the person, the person–context interaction was overlooked, which led to the deprivation of human and social development of the learner (bronfenbrenner & evans 2000). post-1994 education for learners experiencing barriers to learning considering the historical influences up to 1994, education for learners experiencing barriers is portrayed as being of poor quality, specifically for the disadvantaged population (daniels 2010). the outcomes of these historic events led to transformation, changing laws, policies and structures (steyn et al. 2017). the expectation that the democratic government would provide better living conditions for a larger part of the population, in line with the basic human rights principle (fataar 1997), endorsed an anticipation that with the move away from apartheid education, education for learners experiencing barriers would flourish within the inclusive paradigm. based on the findings of the national education policy investigation (nepi) (national education coordinating committee [necc] 1993) and the value framework of democracy, suggestions were made on policy issues concerning areas of education related to support services at the macro level (necc 1993). the transition to ie unlocked a new value system of inclusion, opening new opportunities (dalton, mckenzie & kahonde 2012) for the education of learners experiencing barriers, yet the implementation thereof remains problematic (daniels 2010; engelbrecht 2018). a notable mind-shift implied that the individual no longer has to ‘fit into’ the educational system, but that the educational system needs to adapt to meet the needs of the individual child (kaur & arora 2014). intervention now focussed on learner strengths and capabilities, considering the contextual influences (king & madsen 2007). the nepi recommendations had an extensive influence on adaptation of the education system at macro and exo levels, resulting in the drafting of policies and a commendable number of guideline documents (doe 1997), such as the ewp6 (doe 2001); the conceptual and operational guidelines for the implementation of ie: full-service or inclusive schools (doe 2005a) and guidelines for support schools as resource centres (doe 2005b); and the national strategy on screening, identification, assessment and support (sias) (dbe 2014) which outlines the implementation of ewp6. the target actions of ewp6 (doe 2001) outline activities for education transformation to improve the quality of education. the government’s intentions to place high priority on the minimisation, removal and prevention of barriers to learning and development in the educational context by means of prioritising the restructuring and improvement of education support services (doe 1997; du plessis 2013) were highly supported. the sias policy (dbe 2014) serves as a framework for procedural standardisation to screen, identify, assess and provide isps for all learners, specifically vulnerable learners who require additional support to increase their participation and inclusion in the school. over and above a strategic plan to implement ie (doe 2001), adapting the curriculum to provide for the specific needs of the learners through the availability of a safe and supportive learning environment was widely supported (doe 1997). to support the move away from the segregation and marginalisation of learners with diverse educational needs and the strive towards inclusion for all, ewp6 (doe 2001) and sias (dbe 2014) stipulate that learners must be assessed and placed in accordance with the level and nature of support needed and not placed in schools according to categorisation of the type of disability, as was previously the norm. the reality of the current education system for learners experiencing barriers to learning from a process–person–context–time perspective the layers of systems and parts within each layer – according to the ppct perspective – provide a holistic picture of the functioning of the education system, as illustrated in figure 2. a closer look at the interrelationships between systemic layers and governance reveals the strengths and challenges contributing to the problematic implementation of ie and education for learners with barriers in all the system layers (king & madsen 2007). figure 2: learner with barriers to learning. challenges are experienced in all the system layers, but then even more alarming are the consequences of the interplay between person–context and the resulting outcomes that seep down between the layers of systems to the learner in the classroom, affecting child development negatively, exactly what chapter 1, number 1.5.3 in ewp6 (doe 2001) does not advocate. acknowledging the influence of legacies of the previous dispensation, the factors that empower or constrain communal relationships in the current educational context and governance of the educational system are highlighted from the ppct perspective to make suggestions as to why education for learners experiencing barriers to learning has not moved forward more rapidly. the dbe as a macro system portrays the ideologies and value system of ie (nel 2013), representing the larger governing system of education responsible for laws, legislation, policy drafting, strategic planning, coordination of planning and funding for education for learners experiencing barriers to learning (daniels 2010; dbe 2012a). top-down governance, starting at the distal macro system, subsequently determines the outcomes of interactions in the system layers to portray the successes and challenges of the governing system (steyn et al. 2017). furthermore, embedded in ie, each system and sub-system network has to initiate interactive processes with the person (learner experiencing barriers to learning) who is functioning as a system within the education system (swart & pettipher 2011). an encouraging achievement is that the dbe is reaching the target for converting ordinary schools to full-service schools (fsss) and establishing special schools as resource centres (ssrcs), which resulted in the removal of segregation, enabling more children to attend school than pre-1994. although the department regularly publishes progress reports in which they acknowledge weaknesses and, in many cases, suggest strategies to minimise the challenges (dbe 2015a, b) there are still too many eminent challenges (see figure 2). there are still too many children with barriers or disabilities who are not yet accommodated in any school because admission policies for ordinary and sss remain inequitable and, therefore, discriminatory. infrastructure is also poor and the lack of knowledgeable personnel contributes to the problem of implementation (department of women children & people with disabilities [dwcpd] 2013). the dbe is under serious criticism for the poor implementation of ie and it appears that education for learners experiencing barriers starts to disintegrate in the macro system, where the dbe controls the factors influencing and contributing to the current status. therefore, i take the stance that the top-down governance causes the strengths and challenges to accumulate in each layer of the system (figure 2), causing a ‘funnel’ effect downwards through the other systems to the learner-person system (figure 2). this is based on the assumption that processes in one particular system do not necessarily cause challenges in that system alone (swart & pettipher 2011), but because of constant interactions between many systems, a circular feedback loop arises, creating the situation that currently exists. the exo is an influential system in education, as it provides a bridging area between the nine provincial departments (the second layer of government) (steyn et al. 2017) and the meso system. the departments liaise with district-based support teams (dbsts) to function in accordance with national and provincial legislation (dbe 2010). the dbsts include staff from provincial, regional districts and ssrcs (doe 2001), directed by the decisions made in the macro system. the provincial departments and the dbsts oversee and implement the strategic plans for support service provision to schools, for example, investment in whole school development by assisting and supporting principals (mafuwane & pitsoe 2014), teachers and learners (doe 2001). to further illustrate this systemic perspective, one must bear in mind that, understandably, the challenges already identified in the macro system create difficulties when the implementation of policies and budgets is executed at the exo level. for example, the policy on the organisation roles and responsibilities of education districts (dbe 2012b) contains a distressing remark: ‘there has been no common formulation of what a district education office should be or do’. the report confirms that only some district offices understand their roles, leading to a low level of efficiency of dbsts. if this is the case, how can one expect the school sub-system to function effectively? furthermore, some districts are too large to accommodate visitation and support to all schools (dbe 2012b). considering this, there is no certainty that the district teams adequately contribute to improve learning environments for learners by refining the abilities of principals and teachers. collaboration (process) between systems is fundamental to the success of ie (nel, nel & lebeloane 2016). therefore, if there is insufficient collaboration between the exo and the meso systems, the process will be interrupted in the meso system, resulting in the education to learners with barriers being further fragmented because of lack of service provision and communication between the dbe, dbsts and schools. even though the dbe promised that ordinary schools, fsss and ssrcs, in collaboration with dbsts, would become solid support structures to learners with learning breakdown and disabilities (doe 2005b), this is not evident in reality. it appears that not enough has been put in place concerning schooling in general, and education for learners with diverse learning needs in particular, to counteract the high proportion of repetition figures, school dropout percentage and quality of teaching and learning (smit, wood & neethling 2015). there are still about 70% of children with disabilities not accommodated in schools (doe 2005b), whether in ordinary schools, fsss or ssrcs. in the meso system, micro systems interact, acknowledging that the learner-person, as a developing individual (bronfenbrenner & ceci 1994), is concurrently involved with different micro systems (e.g. school, family, peers and community). meso systems support developmental characteristics in the form of processes (teaching, interventions, learning and counselling) (engeström 2016). activities, roles and relationships taking place across settings (rosa & tudge 2013) emphasise exposure and active participation of the learners in these settings, resulting in learning experiences (experiential learning) (rosa & tudge 2013). when the learner is denied these opportunities to partake in activities, outcomes (the result of activities) are not reached. the effects of proximal processes (outcomes) can be more influential on the developing person than the interactions themselves (bronfenbrenner & ceci 1994), especially when we consider, for example, resilience (pearson, pearce & kingham 2013) and coping skills (king & madsen 2007). it should be noted that the dynamism of the proximal processes varies according to the person characteristics and the environmental context (bronfenbrenner & morris 2006). the school is a micro setting where activities, interpersonal roles and relations should be supportive of developmental characteristics (rosa & tudge 2013). the learner is part of strengths and challenges in this setting, which will either protect or place the learner at risk (king & madsen 2007). teachers have an important role in reinforcing the development of person characteristics in the teaching and learning environment to influence processes for determining positive developmental outcomes. person characteristics (e.g. a teacher or objects and/or symbols) direct the course and influence the processes (e.g. computers and textbooks) (bronfenbrenner & morris 2006:823). force characteristics lead to ‘exploration, manipulation, elaboration and imagination’ (bronfenbrenner & morris 2006), which in turn all lead to progression in interactions underpinning learning (evans 2003). the latter is hampered by aspects such as the lack of teacher expertise in education for learners requiring additional education or support (person factor); this may be because of poor qualifications and insufficient in-service training (dreyer 2017) or the unavailability of resources and sustenance of infrastructure (dwcpd 2013). participation in processes develops the learner’s biological resources of ‘ability, motivation, knowledge and skills’ (bronfenbrenner & morris 2006) to participate in interactions with other persons in the school context. within these supportive interactions, the learner builds independence (o’toole, hayes & mhathúna 2014) and becomes a mediator and creator of his or her own development. however, in the absence of these resource characteristics, mediation does not take place, slowing down developmental outcomes (bronfenbrenner & morris 2006). considering this, i reason that the teacher, sbst and dbst play an important supportive role (nel et al. 2016) in assisting the learner in developing resources. if this support is lacking, it will inhibit the onset and sustenance of force characteristics because demand characteristics attract or dampen interactions with the environment, which in turn nurture or interrupt the processes (bronfenbrenner & morris 2006). in the absence of force and biological resources, there is ineffective interaction from person to context. however, ineffective interaction from context to person contributes to the absence of force and biological resources (tudge et al. 2009). in other words, the learner with barriers does not benefit from teaching and learning because the teacher has no experience in teaching or supporting the learner with barriers, resulting in the learner not being supported in strengthening of person characteristics. the opposite is also true – in case of stability of regular service provision, functional education structures and good physical environment, positive developmental outcomes as a dual person–context interactive relationship will occur. even in disadvantaged schools, competent outcomes can outweigh dysfunction if stable environments are in place (bronfenbrenner & morris 2006) to support proximal processes. i am of the opinion that because of the lack of accountability and optimal interaction between many of the dbe systems, a large gap is evident between the governing systems directly affecting the person system. as interactions between systems are of a reciprocal nature, many of the problems experienced at the micro level originate in the macro system, with other influences such as poor teaching and poor family circumstances, placing additional pressure on the support systems in the micro and exo systems. although there are many other reasons why micro systems become dysfunctional, poverty and unemployment (donald et al. 2014) to name a few, insufficient support systems (engelbrecht, oswald & forlin 2006) are considered a major contributing factor in the school environment, in hampering effective teaching and learning. to add to this, insufficient school governance and poor teaching, especially in the rural areas (dwcpd 2013), are noted. bronfenbrenner and morris (2006) emphasise in the ppct model that the process of interaction between person and context for learning outcomes is more important than the person characteristics or the context factors viewed separately. systemic assets or weaknesses from the macro and exo environments definitely create positive or negative interactive processes within the school environment, resulting in a ‘funnel effect’ regarding the problems directly channelled down to the learner. acknowledging that the education system is not the only causal factor, i reason that instability and changes in the education system are influencing factors, directly or indirectly, in the person–context process, influencing developmental outcomes (bronfenbrenner & morris 2006). conclusion there is much blame, not without reason, attributed to what was in the south african educational system but it seems that too few lessons were learnt from the past mistakes, and what should be has not been realised. this article ventured into the terrain of many challenges with fewer achievements. attempts to implement ie successfully in developed and developing countries are being noticed (ahsan, deppeler & sharma 2013). the situation in sa (a developing country) clearly reflects the fact that the transformation process in education for learners experiencing barriers is progressing too slowly (right to education of children with disabilities campaign [r2ecwd] 2016), even though the necessity of advancement to equalling international targets is the ideal (the millennium development goal of universal primary education by 2015 and education for all by 2015) (kaur & arora 2014). nonetheless, the reality in sa suggests that the road to educational transformation has been a problematic and bumpy one, which by now should have had a greater and wider impact on learners experiencing barriers to learning and development (dbe 2011; sahrc 2012). furthermore, if the implementation strategy of ie (doe 2001) had played a prominent role in the inclusion of all learners, a definite movement away from the conditions of se before 1994 would have been more prominent. as ie has not optimally been realised in sa, there is evidence of many factors that still negatively affect the development of the person in the pptc model. the lack of inclusive transformation ranges from scattered incidents of exclusion to situations of gross neglect regarding learners within the educational system. recommendations it would be unfair to compare development of education for learners experiencing barriers to learning in sa to other developed and leading countries (e.g. the united states of america). however, there is no harm in following these examples (nel et al. 2012). being a democratic country, the main objective of the education system should not be to merely provide education, but to provide quality education for all learners (doe 2001; du plessis 2013). simply providing a service does not make it accessible or worthwhile for at-risk children (dbe 2012a); thus, the focus must be on the teacher to bring changes to se teaching and learning, and perhaps have more vigorous campaigning to make changes in the macro and exo education systems, setting the stage for quicker change and encouraging people to take individual responsibility. in reflecting on education for learners experiencing barriers to learning in sa, i firstly suggest that better and closer collaboration between the dbe and higher educational institutions could benefit se, in the sense that more focussed specialised teacher training could be provided by these higher education institutions, resulting in enhanced quality of teaching and learning. secondly, inclusion of learners and the success of se services are dependent on the functionality and effectiveness of the support systems and, therefore, transformation and change in education can only be achieved if the full range of education and training support services are provided and aligned (doe 2001) and work together to pool their resources. this must be initiated from the bottom-up and the top-down all the way through to all the bio-ecological system layers within the ppct model, ensuring that diverse education speedily moves from what was to what should be, and is freed from what is and moves to what could be. acknowledgements competing interests the authors have declared that no competing interests exist. authors’ contributions all authors contributed equally to this work. ethical considerations ethical clearance to conduct the study was obtained from the education sciences research ethics committee (es-rec) (clearance number: 00530-17-a2). funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of 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low-income african american youth: considering an ecological approach’, journal of career development 33(4), 395–411. https://doi.org/10.1177/0894845307300519 krishnan, v., 2010, ‘early childhood development: a conceptual model’, presented at the early childhood council annual conference 2010, “valuing care”, christchurch convention centre, christchurch, new zealand, may 7–9, 2010. mafuwane, b.m. & pitsoe, v.j., 2014, ‘circuit managers as agents of school development and support: a conceptual analysis’, mediterranean journal of social sciences 5(9), 439–444. https://doi.org/10.5901/mjss.2014.v5n9p439 maguvhe, o., 2015, ‘major trends in education, empowerment and development for learners with disabilities’, in o. maguvhe & m.d. magano (eds.), disability in context: a socio-educational perspective in south africa, pp. 1–13, cengage learning, andover. national education coordinating committee (necc), 1993, the national education policy investigation: the framework report and final report 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33(3), 121–140. south african human rights commission (sahrc), 2012, annual report, sahrc, braamfontein. steyn, h.j., wolhuter, c.c., vos, d. & de beer, z.l., 2017, the south african education system: core characteristics in focus, keurkopie, noordbrug. swart, e. & pettipher, r., 2011, ‘a framework for understanding and inclusion’, in e. landsberg, d. krüger & e. swart (eds.), addressing barriers to learning: a south african perspective, 2nd edn., van schaik, pretoria. swart, e. & pettipher, r., 2016, ‘a framework for understanding inclusion’, in e. landsberg, d. krüger & e. swart (eds.), addressing barriers to learning: a south african perspective, 3rd edn., van schaik, pretoria. tudge, j.r.h., mokrova, i., hatfield, b.e. & karnik, r.b., 2009, ‘uses and misuses of bronfenbrenner’s bioecological theory of human development’, journal of family theory and review 1(4), 198–210. https://doi.org/10.1111/j.1756-2589.2009.00026.x zimmerman, a.l. & kontosh, l.g., 2007, ‘a systems theory approach to career decision making’, work: a journal of prevention, assessment, and rehabilitation 29(4), 287–293. abstract introduction research methods discussion conclusion acknowledgements references footnotes about the author(s) rory du plessis school of visual arts, faculty of humanities, university of pretoria, pretoria, south africa citation du plessis, r., 2020, ‘the life stories and experiences of the children admitted to the institute for imbecile children from 1895 to 1913’, african journal of disability 9(0), a669. https://doi.org/10.4102/ajod.v9i0.669 original research the life stories and experiences of the children admitted to the institute for imbecile children from 1895 to 1913 rory du plessis received: 25 july 2019; accepted: 06 july 2020; published: 28 aug. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: south african scholarship on intellectual disability has produced a sizeable body of research, yet there are numerous areas where there is a paucity of research. one area in which there is a conspicuous paucity of research is historical studies of people with intellectual disability (pwid). the existing works devoted to the history of pwid in south africa are primarily focused on the legal provisions and institutions for the protection and care of pwid. missing from these works are the life stories and experiences of pwid. objectives: the article offers a study devoted to the life stories and experiences of the children with intellectual disability (cwid) who were admitted to the institute for imbecile children from 1895 to 1913. the institute opened in april 1895 in makhanda (formerly known as grahamstown), south africa. the institute was the first of its kind in the cape colony for cwid. method: the study presents a qualitative investigation of the life stories and experiences of the children that were recorded in the institute’s casebook. the entire set of 101 cases contained in the casebook was analysed by adopting a gadamerian approach to hermeneutics. results: the examination of the institute’s casebook identified several broad themes relating to the children’s admittance, daily life at the institute and their routes out of the institute. the study also extols the individuality of each child’s life story to provide an awareness and richer appreciation of the humanness and personhood of the children. conclusion: the article contributes a positive narrative to the identity and the history of south african children with intellectual disability living in the late 19th and early 20th centuries. keywords: dr thomas duncan greenlees; makhanda; children with intellectual disabilities; cape colony; disability studies; personhood; humanness. introduction more than two decades ago, anne digby, a leading social historian of medicine, stated that: ‘[h]istorically, the social marginality of people with learning disabilities has been mirrored by their academic marginality’ (digby 1996:1). although south african scholarship on intellectual disability has produced a sizeable body of research, one can argue that digby’s statement is still true as there are numerous areas where there is a paucity of research (see capri 2016). one area in which there is a conspicuous paucity of research is historical studies of people with intellectual disability (pwid) in south africa. as far as i can ascertain, works devoted to the history of pwid in south africa are covered only by foster (1990) and minde (1975a, 1975b). although these authors’ studies are laudable for doing pioneering groundwork, their primary focus is on the history of the legal provisions and institutions for the protection and care of pwid. missing from the works of both of these authors are the life histories and experiences of pwid. for atkinson (2005:10), such an omission serves to endorse a misguided perception that ‘people with learning disabilities [are] seen as a people with “no history”’. studies on the history of south africa’s psychiatric hospitals have offered a glimpse into the life stories of the pwid who were institutionalised patients (e.g. see swartz 1996). these studies remain praiseworthy for highlighting the life stories of pwid, but they are only a small part of a larger body of research focused on researching the lives of patients suffering from mental illness. in this article, i aim to offer a study devoted to the life stories and experiences of the children with intellectual disability (cwid) who were admitted to the institute for imbecile children from 1895 to 1913. the institute for imbecile children opened in april 1895 on the grounds of the grahamstown lunatic asylum (hereafter ‘the asylum’) in makhanda (formerly known as grahamstown), south africa. the institute was the first of its kind in the cape colony for cwid, and it aimed to ‘educate them, and train them to useful occupations’ (g27–1895:63). dr thomas duncan greenlees (1858–1929) founded the institute and was appointed as its visiting medical officer from its inception to 1907. in addition to this appointment, greenlees held the post of medical superintendent of the asylum, from 1890 to 1907, and he was appointed as the surgeon-superintendent of the chronic sick hospital from 1890 to march 1903 (du plessis 2017). a substantial body of documents related to the institute is preserved by the western cape archives and record service. the documents include the institute’s annual reports, which were submitted to the government of the cape colony, correspondence between greenlees and government officials, and the institute’s casebook. several scientific articles authored by greenlees (1894a, 1897, 1899, 1903, 1905, 1907) on the subject of pwid complement this body of documents. on closer analysis, the majority of these archived documents and scientific articles can serve little in the way of exploring the life stories of the cwid who lived in the late 19th and early 20th centuries. although the annual reports and the published scientific articles are invaluable resources in contextualising the conception of the institute, descriptions of the therapeutic regimen offered and the demographic profile of the patients, they are largely silent on the lives of the cwid who were institutionalised. one conclusion that can be made from these documents is that they present a dehumanised construction of the cwid. in the annual reports for the institute, there is a fixed perception of the cwid as having deficient physical and mental abilities and life stories characterised by neglect and abandonment, where they are deplored for being ‘hopeless and helpless’ (g25–1900:20) cases. to illustrate, greenlees repeatedly described the children as ‘neglected waifs’ (g27–1896:39), thereby presenting the children as a group who were rejected, ostracised and despised by their families. greenlees presented a dehumanised construction of the children in the annual reports, but he did concede that in providing a ‘comfortable home and good food’ (g20–1897:25) for the cwid, the institute was ‘doing a good work’ (g20–1897:25). the annual reports of the institute thus indicate that greenlees realised the need for the facility to be committed to the care and well-being of the children who were admitted. this act of humanitarianism certainly informed the therapeutic regimen of the institute, as the children engaged in amusements and activities and received food, healthcare and material provisions. nevertheless, the function of the institute in humanitarian terms was only acknowledged in the annual reports and in the asylum’s periodical, the fort england mirror.1 in greenlees’ scientific articles, he solely envisaged the function of the institute as providing the cwid with ‘the best known methods of educating and training’, with the object of ‘making them useful members of society’ (greenlees 1897:14). this function was conceived not on humanitarian grounds, but as a means to ensure that a parent’s ‘helpless progeny’ would not become a ‘useless member of society and a burden on the family or the state’ (greenlees 1907:20). along these lines, greenlees held that pwid were objects of contempt and disgust, for burdening their families with the responsibility of caring for them, or for depleting state funds by being admitted to asylums, where they only ‘swell the death rate’ and increase the ‘chronic residuum’, which makes up the patient composition of an asylum (greenlees 1905:222). people with intellectual disability were dehumanised not only through their being constructed as undeserving and despised objects of family and state support, but also through the perception that they posed a threat to the ‘health of society as a whole’ (clarke 2004/2005:74). greenlees believed that pwid indicated the ‘degeneracy of the anglo-saxon race’ (greenlees 1907:20), and he engaged in divesting them of humanness, by declaring that they were ‘monstrosities’ (greenlees 1907:21) and an ‘awful curse’ (greenlees 1899:36). ultimately, as an advocate of eugenics (hodes 2015:12),2 greenlees proposed ‘the destruction of infants known to be hereditarily tainted with disease’ (greenlees 1903:19), as well as ‘sterilisation […] and even the lethal chamber’ (greenlees 1907:21) for pwid.3 to summarise, the institute’s annual reports and greenlees’ scientific articles are silent on the life histories of the cwid who were admitted to the institute. it is imperative to underscore that the omission or silencing of the children’s life stories is understood as constituting an act of dehumanisation (gillman, swain & heyman 1997:690): [i]t has been argued that people who lack a history are at risk of having a history, and an identity, imposed upon them […]. the objectification of people with learning disabilities as ‘other’ is due in part to this lack of history […]. seen as an homogenous group, they are defined by their learning disability. (atkinson 2005:10–11) one archived resource that offers a means to appreciate and explore the life stories and personhood of the children is the institute’s casebook. despite the fact that clinical casebooks of pwid are ‘problem saturated and pathologising’ (gillman et al. 1997:682) and that they predominantly privilege ‘information that is useful to professionals, such as iq and medical diagnosis’ (gillman et al. 1997:675), they also contain information about individuals’ unique life stories and distinct personal experiences, and their individuality (clarke 2006:470; hoole 2012). thus, by examining the casebook, we bring into view the humanness of the children. research methods design and data collection the study presents a qualitative investigation of the life stories and experiences of the cwid that are recorded in the casebook of the institute for imbecile children. the casebook is archived at the western cape archives and record service. study population the institute’s casebook contains the cases of 101 cwid, of whom 51 were female and 50 were male. the average age of the children on admittance was 10 years. the institute was reserved for white children, but in 1908 and 1909 two mixed-race children were admitted. the casebook also records that of the cwid who were admitted, 43 were suffering from epilepsy, 30 were suffering from paralysis and 43 were suffering from mutism. in particular, 10 of the cwid were recorded as being multiply disabled, as they were suffering from epilepsy, paralysis and mutism. in the institute’s annual reports and casebooks, the children were diagnosed as suffering from either idiocy or imbecility. for historians, idiocy and imbecility are ‘slippery terms’ as they describe ‘a range of behaviours, mental conditions and physical afflictions. broadly speaking, both conditions were identified in relation to reduced intellectual and functional abilities’ (eastoe 2019:75). thus, the diagnosis of idiocy and imbecility lacks a precise graduation of intellectual disability. a further awareness of the slipperiness of the terms becomes apparent when the annual reports and casebook of the institute are scrutinised. for the children who were suffering from mutism and/or epilepsy, the documents of the institute do not clarify whether this was a feature of their intellectual disability or the result of a hereditary or congenital disorder. to substantiate, the annual reports simply stated that ‘physically as well as intellectually … some defect’ (g60–1903:121) was ascertained in a number of children. in the casebook, the pro forma columns for recording whether a child suffered from mutism and/or paralysis required only a yes or no answer. although the article does not seek to offer a retrospective diagnosis of the children, where a child is described in the casebook to have ‘significant cognitive difficulties, with little or no apparent understanding of verbal language, little or no ability to care for oneself, and usually associated medical conditions’ (vehmas 2019:521), i postulate that the child had significant intellectual disability. furthermore, i also recognise that some of the children were multiply disabled. the study seeks to make special reference to the children who were multiply disabled and/or those with significant intellectual disability, as the vast majority of scholarly enquiries have consigned these children to the ‘margins of disability history’ (allen & fuller 2016). data analysis the entire set of 101 cases contained in the institute’s casebook was analysed by adopting a gadamerian approach to hermeneutics (see gadamer 2004). the analysis followed the step-by-step approach for gadamerian hermeneutics outlined by fleming, gaidys and robb (2003). to explain briefly, this entailed investigating every sentence of the casebook to identify themes and patterns. once the themes and patterns were identified, the casebook was repeatedly read to develop a detailed contextualisation and comprehension of the themes and patterns pertaining to the children’s life stories and experiences. for fleming et al. (2003:119), researchers using gadamerian hermeneutics must ensure that they are ‘responsible for establishing the trustworthiness of the research process and the truthfulness of his or her analysis’, the standards of which pertain to providing the reader with ‘sufficient detail of the processes, as well as the findings in the research report’ (fleming et al. 2003:119). to this end, the article makes use of extensive quotes from the source material, as well as ensuring that the quotes are sufficiently and coherently contextualised, so that the reader can gain a perspective of the analysed casebook and can thereby establish the credibility of my interpretation. the gadamerian analysis embarked upon in this article is delimited to an exploration of the content of the institute’s casebook that pertains to the life stories and experiences of the patients, with the aim of bringing into view their humanity. as such, the article does not claim to offer a complete assessment of the casebook medium, but only reports on the casebook content that presents a ‘snapshot of past lives lived, traces of voice and echoes of experience’ (eastoe 2020). the clinical content of the casebook and the medical history of the patients are critical sites for future investigation and hold the potential to reveal further levels of interpretative insight and offer a more comprehensive understanding of the casebook medium. in this regard, the analysis and the findings of the article will always be open to alternative and competing interpretations that arise from further scholarship engaging with the clinical content of the institute’s casebook. ethical consideration the study did not require ethical clearance, as the institute’s casebook is open for public consultation at the western cape archives and record service. where possible, the article uses the current terminology of ‘intellectual disability’, instead of the 19th-century term ‘imbecile’. the article maintains the anonymity of the cwid who were admitted to the institute by using pseudonyms. however, in an effort to humanise the subjects, the children are provided with full names. discussion the discussion is divided into three sections. the first section considers the admission routes of the children to the institute. the second section discusses the children’s daily life and experiences at the institute. the third section considers the various routes out of the institute. admission routes to the institute hospitals and welfare organisations the institute received cwid who were transferred from the hospitals and welfare facilities of the cape colony. these can be broadly categorised into two groups, namely, those who were transferred on greenlees’ request and justification, and those who were transferred to the institute by the authority of the under colonial secretary. in the first group, admissions came from the chronic sick hospital,4 the asylum and st peter’s home, a welfare home and orphanage in grahamstown. amy dunn (hgm 24:5) was admitted to the institute at the age of 9 in june 1895 from st peter’s home. when she was about 4 years of age, she was found in the town of addo wandering alone. after several failed attempts to report her whereabouts and identify her parents, she was sent to st peter’s home (05 june 1895, co 7163). victoria anderson (hgm 24:10) was originally at a hospital in kimberley before moving to the care of st peter’s home. in 1891, victoria was sent to the chronic sick hospital, and in april 1895, she was admitted to the institute. both amy and victoria were regarded as patients for whom the education provided by the institute might ‘produce some permanent mental benefit’ (05 june 1895, co 7163). the siblings suzanne (hgm 24:45) and tiaan bezuidenhout (hgm 24:46) were patients of the chronic sick hospital for several years before being admitted to the institute in october 1901. greenlees justified their admission to the institute on the basis that it was ‘probable that by education and training they may improve intellectually’ (hgm 24:45). significantly, in contrast to these cases, where admission to the institute was justified by the prospect of improvement, is the case of tanya klopper (hgm 24:29). the 13-year-old tanya (hgm 24:29) was a patient of the asylum, and owing to her young age, was deemed by greenlees to be ‘much more suitable for treatment at the institute […] although there is little hope of improvement mentally’ (23 august 1898, co 7170). in the second group, cwid who were patients of the colony’s hospitals were transferred to the institute by the authority of the under colonial secretary from requests made by resident magistrates and the superintendents of general hospitals. emma rogers (hgm 24:8) was certified as a ‘lunatic’ and was admitted in 1893 to the old somerset hospital in cape town. on 28 november 1895, emma was admitted to the institute in a poor physical condition, blind and unable to speak. christine thompson (hgm 24:14) was a patient of the old somerset hospital from 28 september 1895, before she was promptly sent to the institute on 28 november 1895. the medical certificates for christine report that she could not speak, she took no notice of her surroundings and she had ‘no conversational or reasoning powers’. danica rose (hgm 24:27) was admitted on 01 april 1898 from a kimberley hospital, where she was receiving treatment in the hospital for some time as a ‘lunatic’. danica was 16 years old when she was admitted to the institute, and she was suffering from epilepsy and paralysis and was unable to speak. in the casebook entries for this second group, greenlees openly criticised the views and practices of the resident magistrates and the hospital superintendents. the cases of emma rogers (hgm 24:8) and danica rose (hgm 24:27) indicate that these children were certified and were managed as ‘lunatics’. however, greenlees emphatically declared that cwid ‘are not lunatics’ (11 june 1895, co 7163) (emphasis in original), and he acknowledged the need for resident magistrates to be made aware that ‘[a]sylums are not the proper places to treat’ cwid, and for them to become aware of the existence of the institute (hgm 24:27). it was equally imperative for the magistrates to become familiar with the envisaged patient composition of the institute, namely, cwid who were educable and trainable. this would thus exclude the multiply disabled cwid who had been sent to the institute (g60–1903:121). domestic care and the committal context of children with intellectual disability the first aim of this section is to explore the domestic care of the cwid evidenced in the casebook. put differently, prior to institutionalisation, the family was the ‘primary locus of care’ (rose 2017:16) for cwid, and the presence or absence of this care is documented in the casebook. the second aim is to identify the committal context for the cwid. although the casebook does not contain the reasons why a family decided to commit their child to the institute, it is possible to identify broad themes that may have influenced their decision. the neglect and abuse of cwid is evidenced in several cases. ruan odendaal (hgm 24:7) was found by the colonial authorities to be living in a ‘dirty and neglected condition’ in an unfurnished house, where he was locked up and left without any supervision. the authorities ascertained that the father was an alcoholic and was widowed, and that when he left for work, he would leave ruan unattended in the locked-up house. less severe instances of neglect are evidenced in cases where cwid arrived at the institute in a filthy condition. by way of example, the trio of brothers isak (hgm 24:31), janco (hgm 24:32) and ockert uys (hgm 24:33) were admitted to the institute on 19 november 1898 in a ‘dirty and neglected condition’. the lack of care is also indexed by guardians who ‘utterly neglected’ the education and learning of their cwid (hgm 24:60). in a handful of cases, there are instances that can be interpreted as suggesting physical abuse (see also hoole 2012:223). for example, hennie steyn (hgm 24:19) seemed to be continually afraid; he would often run away from adults, and when spoken to, he would raise his hand and arm ‘as if protecting his head from a blow’. the focus now shifts to the casebook entries that contain multiple indicators of families providing care, being devoted to the well-being of their children and expressing love (see also clarke 2004/2005:65; taylor 2017b:763). one recurrent theme in the casebook is cwid who were admitted to the institute in their late teens, where their life stories showed a concerted effort on the part of their parents to ensure that they were, at least to some extent, ‘part of the human community’ (bogdan & taylor 1989:145). the casebooks for susan pringle (hgm 24:28) and ethan johnson (hgm 24:79), admitted to the institute at the ages of 16 and 13, respectively, indicate that both children had attended school for a limited time, even though they ‘did not progress like [the] other children’ (hgm 24:28). tom lawton (hgm 24:63) attended school until he was 12 years old, despite suffering from a visual impairment that became severe by the time he turned 14. he was 17 years old when he was admitted to the institute. before peter martins (hgm 24:69) was admitted to the institute, at the age of 14, he had attended school for a while, and when he could not progress anymore at school, his father offered him work. luke williams (hgm 24:52) had attended school until he could no longer keep up with his peers. thereafter, he was kept at home, where he assisted in household duties. he was 18 years old when he entered the institute. for the parents who were paying for their children’s care at the institute, the casebook contains five cases that indicate how families sought a range of different treatment methods for their children before they admitted them to the institute. chupik and wright (2006:83) underscore that such cases serve as an important reminder that ‘most caring (and controlling) of the mentally deficient was occurring outside of formal institutions’, and we hence need to be aware that (chupik & wright 2006): [t]he route to the asylum, therefore, was a path that a minority of families did not arrive at without first seeking other types of commonly based medical interventions. depending upon economic circumstances, location and severity of disability, families relied on a variety of treatments to alleviate their children’s ‘mental deficiency’. (p. 84) the parents of sabrina stone (hgm 24:49) provided her with ‘medical treatment at home’, and only once it was concluded that it ‘gave no good results’ did they seek to admit her to the institute. the medical certificates for gregory bowie (hgm 24:50) present a bleak portrayal of him as ‘unable to walk, […] nearly totally blind [and] unable to feed or dress himself’. yet, his mother was anything but despondent, and she consulted with greenlees in 1899, 3 years before he was finally admitted to the institute, in june 1902. even though greenlees at this first meeting recommended that gregory be admitted, his mother rejected the offer and tried alternative treatments. although these treatments ultimately failed, greenlees acknowledged that his mother did the ‘best she can for him’. in the case of both sabrina stone (hgm 24:49) and gregory bowie (hgm 24:50), the exact medical treatments are unrecorded, but in the case of jacques swanepoel (hgm 24:26) we are provided with the details of one treatment option. jacques’s parents were citizens of the zuid-afrikaansche republiek, and they resided in pietersburg (now known as polokwane). they sought to bathe jacques in the hot springs of the area as a means of improving his condition. the bathing resulted in some improvement, after which they sought further progress by sending him to the institute. these cases relate to alternative therapeutic options and home-based medical care, but the following two cases highlight disturbing surgical procedures performed by doctors at general hospitals. prior to laura harvett’s (hgm 24:53) admittance to the institute, her casebook records that she was subjected to ‘two operations performed on head (temporal region) […] to “allow brain to expand”’. in november 1908, geoff hunter (hgm 24:82) was admitted to the institute at the age of 10 years, suffering from epilepsy and paralysis. sometime before his admittance, the casebook documents that he was trephined. trephining was a surgical procedure that was held by the contemporary medical community to have some credence in the treatment of epilepsy. in particular, greenlees subjected a patient of the asylum to the surgery as a means to ‘alleviate a cerebral disease giving rise to mental aberration’ (greenlees 1894b:404). section 77 of the lunacy act, 1897, related to the ‘general regulations for institutions for the care, education and training of idiots or imbeciles’ (see co 7559), and it outlined the forms that were required to accompany the admission of a child to the institute. two of these forms were the ‘resident magistrate’s statement in support of application for admission of a patient’ and the ‘application of parent or guardian for admission of a patient’. although these forms were not archived, in completing the institute’s casebook, greenlees provided a summary of their content. although we must be cognisant that greenlees’ summary only highlights the content that he deemed important, it still allows us to have a tentative understanding of the committal context of the cwid. the onset of violent and destructive behaviour is a common theme in the committal context of some of the cwid. rudi burger (hgm 24:71), a 12-year-old boy, was admitted to the institute after his behaviour became violent. with kyle dawson (hgm 24:89), an 8-year-old boy, his behaviour was not only violent and troublesome, but also led to him ‘frequently [getting] into danger’. with two cwid who were almost 10 years old, their behaviour posed a danger and a threat to other children. nicole bredenkamp’s (hgm 24:22) admittance to the institute was preceded by a spate of acts of rage, including setting fire to a house. julian cowie (hgm 24:104) was a source of danger to his younger siblings, as he would often strike them with ‘anything he has in his hand’. in all of these cases, the cwid’s age of admission to the institute suggests that the families were providing them with home-based care, but that this ceased when the behaviour of the children became troublesome and posed a danger to themselves and/or others. to illustrate this, christiaan du toit (hgm 24:57), who was ‘almost blind’ and ‘deaf mute’, remained in the care of his family until he became ‘[e]xcitable and wilful’, after which he was admitted to the institute at the age of 12 years. wandering away from home and the risk of getting lost is a second theme in the committal context of the cwid. the 9-year-old marissa marais (hgm 24:25) would often lose her sense of direction and wander into the fields by herself. frik venter (hgm 24:83), a 14-year-old boy from knysna who suffered from mutism, would frequently wander away from home, and he was unable to return home unaided. in two cases, the children’s wandering habits were associated with unfavourable domestic circumstances. shannon fairhurst’s (hgm 24:30) mother had been dead for some years, and her father was ‘unable to attend to her personally’ and could not curb her wandering habits, as he worked during the day. the father of the siblings hendrik (hgm 24:43) and margot vermaak (hgm 24:44) sought to admit them to the institute, as he had ‘no food for his children’, and ‘one of them had been found wandering away from the home half-clad’ (21 august 1901, co 7559). overall, these cases may point to families seeking admission of their children to the institute as a ‘last resort to provide safety and security’ (taylor 2017a:43). in addition, for families that were struggling from unfavourable circumstances and that were poverty-stricken, institutionalisation of the cwid may have offered a guarantee to the families that their children would have access to food, provision, supervision and healthcare (see also eastoe 2020). a third theme is the severity and the frequency of epileptic fits suffered by the cwid. prior to their admittance, morgan jackson (hgm 24:85), age 11, miencke jacobs (hgm 24:3), age 12, and mary robinson (hgm 24:98), age 7, were suffering from epilepsy, with frequent, and sometimes even daily, epileptic fits. with amber mitchley (hgm 24:70), her epileptic fits were so severe that she nearly died on several occasions. the last theme is the predominance of multiply disabled children being admitted at a very young age (see hgm 24:92; hgm 24:23; hgm 24:24; hgm 24:61). these cwid, who were suffering from epilepsy, paralysis and mutism, were all admitted to the institute before they were 10 years old. on the one hand, we can interpret the committal of the young children as being indicative of their families seeking to relieve themselves of caring for the children. on the other hand, it is reasonable to suggest that for the families of multiply disabled cwid, the medical care needs of the children could be provided for better by the institute than by home-based care (see also hoole 2012). daily life and experiences at the institute the exploration of the children’s life and experiences at the institute aims to focus on the casebook entries that provide an awareness and richer appreciation of the humanness and personhood of the children. this discussion draws on the works of bogdan and taylor (1989) and eva feder kittay (1999, 2001, 2005a, 2005b, 2009, 2019) as invaluable resources for articulating and affirming the individuality and humanness of each child. the institute’s casebook is replete with accounts of children who appealed for love and expressed delight at receiving affection. for example, leigh hewitt (hgm 24:59) would often come up to one, ‘wishing to be embraced and fondled’. by highlighting the children’s capacity for love, we develop an understanding of their humanness and personhood (see kittay 1999, 2019). some children actively solicited the attention and affection of adults by various means. the casebook describes that james charman (hgm 24:73) ‘likes to be taken notice of’ and would become animated when visitors entered the institute, so as to gain their attention. claudia donaldson (hgm 24:78) aimed to attract attention from the staff and gain their affection by making ‘much fuss over small things’. for example, she would ‘hold out her hand to one and scream to attract attention to the cause of the weeping’, which would ‘perhaps be an almost imperceptible scratch’. lastly, celine colley (hgm 24:87) would exhibit jealousy if the ‘nurse pays attention to the other children’. the casebook contains evidence that the children were also capable of showing appreciation and affection to the institute’s staff. suzanne bezuidenhout (hgm 24:45) was described as affectionate, and anri barnard (hgm 24:91) was deemed to have ‘some power of affection’. during her 9 years at the institute, suzanne bezuidenhout (hgm 24:45) was ‘[a]ppreciative of everything done for her’, and nico viljoen (hgm 24:48) was described as appreciative of the kindnesses he received. this finding that the children showed affection and appreciation to the staff indicates that they were ‘reciprocating or giving back something important’ (bogdan & taylor 1989:144) in their relations with others. several of the children who were older and more capable would assist in caring for the children who were young, weak or less able (see also hoole 2012:214). kate holgate (hgm 24:20) assisted by dressing some of the children, mark rawling (hgm 24:41) was an aid to ‘feeble children’, edward bainbridge (hgm 24:64) cared for the ‘helpless children’ and tiaan bezuidenhout (hgm 24:46) offered support by looking after a number of the children. although these narratives are silent on the quality of care offered by the children, the casebook for edward bainbridge (hgm 24:64) describes that he was ‘kind to the younger children’ and that he ‘looks after them well’. the institute provided a number of amusements and activities, such as a playground (g27–1896), picnics (g55–1904) and the sport and entertainment offered by the asylum (g28–1898; g60–1903). in addition to these, the institute’s casebook contains numerous entries about the children’s enjoyment of music and their attendance of the asylum’s weekly dances. for bogdan and taylor (1989:142), one dimension to recognise and comprehend the individuality of a person is to understand that they have ‘likes and dislikes’, ‘tastes and preferences’. in the institute’s casebook, we witness the distinct and individual musical and dance interests of the children. jacques swanepoel (hgm 24:26) ‘liked to hear the piano’, and sabrina stone (hgm 24:49) took an interest in singing. ethan johnson (hgm 24:79) attended the dances at the asylum, and when he returned to the institute, he would often spend his time trying to dance and sing. by scrutinising the institute’s casebook, it is possible to argue that the children’s interest in music and dance had a bearing on the doctors’ concluding that they not only had a capacity for happiness, but were also capable of cherishing life and savouring its pleasures (see kittay 1999:151–152). in contrast to the description of rozelle engelbrecht (hgm 24:80) as having ‘limited intelligence’, the doctors marvelled at her having a ‘wonderful idea of music’ and being able to ‘strum a tune on […] the piano’. rozelle ‘picked up a lot of songs from the nurses’, but owing to her shyness, she would only sing them after much coaxing. in later entries, the doctors recorded that rozelle had ‘increased her musical repertoire’ and that she ‘[s]eems happy’. as previously outlined, ruan odendaal (hgm 24:7) arrived at the institute in a ‘very dirty and neglected looking’ condition, having been found by the authorities to be locked up in his father’s house and left unattended. whilst at the institute, he made no progress in his lessons, and his speech remained undeveloped, but he was regarded as a ‘happy little fellow, always singing’, and ‘he seems to have an excellent ear for music’. greenlees conceded in the casebook that if one were to compare ruan’s ‘relatively happy condition’ with how he used to be, it was evident that he ‘has improved having found pleasant surroundings’. overall, greenlees regarded ruan as ‘happy enough in his own way’. lastly, tiaan bezuidenhout’s (hgm 24:46) attendance and enjoyment of the weekly dances hosted by the asylum facilitated a doctor’s apprehension that he was ‘quite capable of enjoying life’. for the children who were profoundly mentally and/or multiply disabled, they are presented in the institute’s casebook as objects of the doctors’ ‘dehumanising stigmatising gaze’ (kittay 2005b:117). nevertheless, the casebook also contains a number of entries that have the potential to highlight the personhood of the children. in august 1898, before recommending that christine thompson (hgm 24:14) be transferred to the chronic sick hospital, greenlees presented a dehumanised description of her as ‘an interesting case pathologically but this is all. educational abilities are nil; she is utterly unable to comprehend her lessons’ (emphasis in original). yet, in the preceding entry, greenlees did concede that christine ‘smiles when spoken to’. in this regard, eva feder kittay (2019:20) asserts that the ‘lack of expressive language’ in profoundly mentally and/or multiply disabled children ‘does not preclude the possibility of receptive language and understanding’. along these lines, on scrutinising the casebook, it is evident that the children demonstrated an awareness of their environment and that they responded to personal engagement. wessel le roux (hgm 24:23) recognised and responded to the ‘sound of dishes’, whereas a number of children, such as christine thompson (hgm 24:14), were receptive and responsive to interpersonal encounters. for example, danica rose (hgm 24:27) could not speak but ‘laughs and grins […] when her attention is attracted’, and shawn murray (hgm 24:100), although he was unable to talk, would smile when looked at. together, these findings demonstrate that the children were ‘far from being unresponsive to their environment and to other people’ (kittay 2005a:126), and in foregrounding their ability to think and understand (bogdan & taylor 1989:139), their personhood is brought into view (kittay 2001): [i]n one who can scarcely move a muscle, a glint in the eye at a strain of familiar music establishes personhood. a slight upturn of the lip in a profoundly and multiply disabled individual when a favorite caregiver comes along, or a look of joy in response to the scent of a perfume – all these establish personhood. we know that there is a person before us when we see […] that there is ‘someone home’; that the seemingly vacuous look is not vacant at all; that an individual’s inability to articulate a ‘language’ as publicly defined does not indicate a lack of anything to say. (p. 568) routes out of the institute as the institute was established for cwid, in general this meant that once the children approached their late teens, they were transferred to other sites. in reviewing the institute’s casebook and annual reports, a more in-depth understanding emerges of the factors that informed the doctors’ decision to transfer the children. in particular, i will enumerate three factors that had a bearing on the length of time that a child stayed at the institute. firstly, for the children who were deemed by greenlees to be ‘hopeless cases’ (g27–1896:39; g20–1897:24), he advocated that they be removed from the institute. for these children, greenlees asserted that ‘there exists but little hope of any permanent mental or intellectual improvement in spite of all the care lavished upon them’ (g20–1897:25), and thus he sought quickly to transfer them to the chronic sick hospital and the asylum, so that ‘accommodation will be provided to cases more amenable to our methods of education and treatment’ (g20–1897:25). on reviewing the casebook entries for these children, it is evident that the length of their stay at the institute was remarkably short, and their stay came to an end before they approached their late teens. for her 3 years at the institute, emma rogers (hgm 24:8), a young teen who was blind and mute, has only one casebook entry, which outlines that ‘[h]er blindness prevents any progress in her education, and she sits quietly all day giving no trouble. has to be fed and dressed’. christiaan du toit (hgm 24:57), aged 12, entered the institute in march 1904, with medical certificates stating that he was ‘almost blind’ and ‘deaf mute’. in the casebook he was dismissed as ‘utterly helpless so far as self help is concerned’, and he was transferred to the asylum in december 1907. the second factor that informed the decision to transfer a child was displays of violent and troublesome behaviour. put differently, once a child exhibited abusive, violent and uncontrollable behaviour, transfer from the institute was initiated. although the institute made use of seclusion to manage troublesome behaviour (see hgm 24:48) and administered bromides to sedate unruly children (see hgm 24:73), the dominant approach used by the institute to deal with children who engaged in objectionable behaviour was to remove them by means of a transfer. for the children who spent a large portion of their childhood at the institute, the onset of violent behaviour in their teenage years marked the end of their time at the institute. caitlin page (hgm 24:17) was admitted in 1896 at the age of 7. in 1905, at the age of 16, when she began to show ‘violence to some of the children’, she was transferred to the asylum. the 10-year-old gareth dean (hgm 24:62) was admitted to the institute in september 1904. in 1910, he was transferred to the asylum on account of his impulsive behaviour, in which he would hit and bite the other children, and he even knocked over a nurse. the third factor that influenced the length of a child’s stay at the institute was their ability to perform ‘useful work’ (hgm 24:48). for the children who provided labour, executed ward duties and cared for the other children, the duration of care that they received at the institute was long. it can thus be argued that the institute’s staff were biased towards children who were able to assist them, and this ensured that the children received preferential care and recreational offerings and meant that they were able to stay longer at the institute (see also hoole 2012:240). by way of example, the siblings suzanne (hgm 24:45) and tiaan bezuidenhout (hgm 24:46) were institutionalised for 9 years before being transferred to the chronic sick hospital at the ages of 22 and 20, respectively. during their many years at the institute, they looked after the other children. nico viljoen (hgm 24:48) was 7 years old when he was admitted to the institute in april 1902. by 1913, when nico was 18, the doctors conceded that he was ‘really too old for [the institute]’, but that he was ‘very useful there with the younger children’. it was only in may 1916, when nico was 21, that he was transferred to valkenberg asylum. in a number of cases, the children were discharged from the institute and were returned to the care of their families. for the purposes of this discussion, i will enumerate three dominant groups that constitute these cases. the first group is the children who made good progress in their education. to illustrate, kate holgate (hgm 24:20) took an interest in her lessons, and greenlees explained that her ‘intellectual faculties have improved very much’, and that ‘her condition gives much satisfaction to her father’. after 6 years at the institute, kate was discharged in 1902 to the care of her family. for several years thereafter, kate’s family continued to report to the institute about her good health, her well-being and the sustained improvement that she was making in her lessons. the second group is the children whose families were not satisfied with the progress their child was making at the institute. these families requested that their children be discharged from the institute so that they could seek alternative treatment options. apart from the physical progress that jacques swanepoel (hgm 24:26) made by being able to walk, he improved very little at the institute. as his family were ‘not satisfied at his progress’, they were ‘anxious to remove him’ from the institute and to return to the hot springs that they had bathed jacques in prior to his institutionalisation. although greenlees expressed ‘doubt as to the probability of improvement by bathing’, he informed the parents that ‘there is no reason why this shouldn’t be tried again’. in january 1901, kelsey barker (hgm 24:42) was admitted to the institute, but owing to the unsatisfactory progress she made at the institute, her father requested in august 1902 that she be discharged. greenlees lamented that he was informed that: [i]t is the father’s intention having an operation performed on her head by a local medical man. this is being done without consultation with me and the father has been advised that it assuredly will not result in any mental benefit to the child and is likely to prove fatal (hgm 24:42). it is not clear whether kelsey was subjected to the surgery, but in october 1906 she was readmitted to the institute, and there are entries recorded for her until 1915 (see hgm 24:75). the third group is the children who made no improvement at the institute, and their families elected to care for them at home. hendrik vermaak (hgm 24:43) made himself useful at the institute, but because he was deaf, he was unable to make progress in his lessons. after 3 years at the institute, hendrik was discharged into his father’s care. steven hollamby (hgm 24:47) was described by greenlees as a ‘disappointing case’, who has ‘not made the progress either mental or intellectual that was expected’. steven was discharged to the care of his mother after only 1 year at the institute. will markham (hgm 24:54) was dismissed by greenlees as being ‘quite incapable of learning anything’. nevertheless, his family requested that he be discharged, and they were ‘prepared to give him a comfortable home and work to do’. during rebecca berman’s (hgm 24:88) short period of institutionalisation, which lasted only 7 months, she was disparaged by the doctors as being in a ‘wretched state’, yet this had no impact on the decision of her parents to be responsible for her care. in these cases, the discharge of the children from the institute to the family reveals that their parents were committed to being responsible for their continued care and well-being (see also clarke 2004/2005:65; taylor 2017b:763). with the opening of the alexandra hospital in 1921, the pwid who were still staying at the institute, and those who had been transferred to the asylum and valkenberg asylum, were all ultimately admitted to alexandra hospital, to become its first intake of patients (foster 1990:36; minde 1975b:1890). conclusion contained in the casebook are glimpses of the life stories of the children before they were admitted to the institute. although some of the children were sent to a number of sites before they arrived at the institute – including welfare establishments and hospitals – there is evidence that others experienced neglect and abuse by their families during their stay at home. although these cases point to neglect, mistreatment and abandonment of the children by their families, this is only part of the story, and it in no way presents a dominant narrative of the children as ‘neglected waifs’ (g27–1896:39). the other part of the story highlights children who remained in the care of their families for a substantial part of their childhood, as well as families who sought a range of medical, surgical and alternative therapies prior to taking the decision to seek admittance for their child to the institute. by taking into consideration both parts of the story, we are presented with a heterogeneous picture of the children who were admitted to the institute. to this end, the article sought to identify the shared themes contained in the life stories of the children, as well as to draw attention to the unique aspects of an individual’s life story, so as to highlight the children’s individuality and humanness. the casebook entries relating to the children’s time at the institute present evidence that they were responsive to the setting of the institute, and they were capable of interpersonal contact and relations (see also kittay 2009). to illustrate, in the casebook the humanness of the children is portrayed, who demonstrated their ‘capacities for love and for happiness’ (kittay 1999:152), by their appreciation of music, their care for other children and their expression of gratitude and affection. based on this finding, it is possible to suggest that the children in their various routes out of the institute, to family care and to various other facilities, were able to live a life that was ‘richly human’ (kittay 2005b:110). by seeking to explore the life stories and the experiences of the cwid admitted to the institute for imbecile children, this article reveals the life stories of only the ‘minority who resided within asylums’, rather than the life stories of ‘the majority who remained outside institutions’ (clarke 2006:471). although the article offers only a glimpse into the lives of south african cwid living in the late 19th and early 20th centuries, the findings offer a means to redress the existing negative narratives of the children at the institute, and to offer the children an identity ‘expressed in positive terms’ (kittay 2019:6), by highlighting their capacity to live the ‘apotheosis of a good life’ (kittay 2019:54), encapsulated by kittay (2019:54) as being able ‘[t]o love, to derive joy from 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notes from the battlefield’, metaphilosophy 40(3–4), 606–627. https://doi.org/10.1111/j.1467-9973.2009.01600.x kittay, e.f., 2019, learning from my daughter: the value and care of disabled minds, oxford university press, oxford. klausen, s., 1997, ‘“for the sake of the race”: eugenic discourses of feeblemindedness and motherhood in the south african medical record, 1903–1926’, journal of southern african studies 23(1), 27–50. https://doi.org/10.1080/03057079708708521 minde, m., 1975a, ‘history of mental health services in south africa. part ix. the protection and care of the feebleminded’, south african medical journal 49(1), 1716–1720. minde, m., 1975b, ‘history of mental health services in south africa. part x. institutions for defectives’, south african medical journal 49(45), 1890–1894. reports on the government and public hospitals and asylums, and report on the inspector of asylums. cape of good hope official publications: g27–1895; g27–1896; g20–1897; g28–1898; g25–1900; g60–1903. rose, s.f., 2017, no right to be idle: the invention of disability, 1840s–1930s, university of north carolina press, chapel hill, nc. swartz, s., 1996, ‘colonialism and the production of psychiatric knowledge in the cape, 1891–1920’, dphil thesis, university of cape town, cape town. taylor, s.j., 2017a, child insanity in england, 1845–1907, palgrave macmillan, london. taylor, s.j., 2017b, ‘“she was frightened while pregnant by a monkey at the zoo”: constructing the mentally-imperfect child in nineteenth-century england’, social history of medicine 30(4), 748–766. https://doi.org/10.1093/shm/hkw129 vehmas, s., 2019, ‘persons with profound intellectual disability and their right to sex’, disability & society 34(4), 519–539. https://doi.org/10.1080/09687599.2018.1545110 footnotes 1. the fort england mirror was published by greenlees as one means to produce and disseminate a positive public image of the asylum and the institute, with the aim of increasing custom from paying patients, and to motivate the public to acts of charity and philanthropy for the institutionalised patients of the asylum, the institute, and the chronic sick hospital. the contradiction between the positive public image of the institute, and greenlees’ scientific publications, where he advocated for the extermination of pwid, is explored further in (du plessis 2021). 2. see also klausen (1997). 3. more broadly, greenlees’ belief in eugenics is evident in him proclaiming that the ‘two great factors in the causation of mental disease are: a hereditary predisposition to mental instability; and intemperance in the use of alcoholic stimulants’ (greenlees 1905:223). the solution to put an end to insanity lay for greenlees in preaching teetotalism and ‘prohibiting injudicious marriages’ (greenlees 1903:19) between couples who had a family history of mental illness. in terms of the latter point, greenlees called for the prevention of insanity by urging the government to ‘prohibit by legal enactment the marriage of cousins – one of the most prolific causes of imbecility’ (greenlees 1907:17), and he called on general practitioners to condemn marriage between people who were suffering from hereditary physical and/or mental illness. 4. the chronic sick hospital was established in 1882 and admitted impoverished pensioners, as well as infirm, destitute and starving individuals (du plessis 2017). abstract introduction research methods and design research findings discussion conclusions acknowledgements references about the author(s) raymond chirowamhangu department of sociology, faculty of humanities, university of pretoria, pretoria, south africa citation chirowamhangu, r., 2024, ‘inclusive education pandemic: learning barriers for children with disabilities in south africa’, african journal of disability 13(0), a1462. https://doi.org/10.4102/ajod.v13i0.1462 original research inclusive education pandemic: learning barriers for children with disabilities in south africa raymond chirowamhangu received: 09 may 2024; accepted: 04 oct. 2024; published: 06 dec. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: children with disabilities encounter obstacles attaining basic education. significantly, previous studies on south africa have shown that up to 70% of the children with disabilities are out of school. despite efforts to support inclusive education through white paper 6 policy, the deployment of resources and transformation of the education sector has been a slower process. objectives: the main objective of the article is to explore the challenges of basic education faced by children with disabilities in south africa. method: the study was conducted during the covid-19 pandemic using a qualitative research methodology. the data were collected using key informant interviews through online media platforms. the data analysis was conducted using computer-aided software in the form of atlas.ti 8. results: this study established several challenges faced by special needs schools, especially in the rural areas. these include a limited number of special needs schools, scholar transport, enrolment, lack of psychosocial and expert support, sanitation and infrastructure and the impact of covid-19 pandemic on children with disabilities. conclusion: the article concludes that even though white paper 6 focusses on special needs education in south africa, there remains poor policy implementation to ensure inclusivity for learners with disabilities. contribution: the research provides an understanding of the challenges faced by children with disabilities to assist policy makers with recommendations and areas of concern to improve policy implementation of the white paper 6 in south africa. keywords: right to a basic education; inclusive education; children with disability; policy; south africa. introduction the right to basic education is universal, and its realisation is mandatory for all children (strohwald 2021). the basis of children’s rights, specifically the rights of children with disabilities, is entrenched in the convention on the rights of persons with disabilities (crpd), african charter on the rights and welfare of the child (acrwc) and convention on the rights of the child (crc). in addition, basic education is recognised as a global development priority through the education for all (efa) initiative and the united nations sustainable development goal (sdg) 4 to promote inclusive and equitable quality education for all children. the rights of children with disabilities are violated when they are excluded from the learning process and adequate services to support their education (musenyente, han & knigge 2022). similarly, the african committee of experts on the rights and welfare of the child (acerwc) reveals that especially in the rural areas of africa, there are disparities in school enrolment and attendance of children with special needs (acerwc 2022). special needs schools provide appropriate support for low-, mediumand high-level needs of learners to offer maximum support for learners experiencing challenges (directorate inclusive education 2014; eds. khumalo & hodgson 2017; mahlaule, mccrindle & napoles 2024). the focus on special needs schools in this research is based on the lack of progress in the implementation of inclusive education in the post-democracy era of south africa (engelbrecht 2006). using the case study of south africa, the basic education challenges on children with disabilities are exposed in this research. basic education perspectives: constitution versus reality the classical writings of the pure theory of law by hans kelsen underline that the constitution is the link between ‘government and the governed’ by instituting laws and policies (owosuyi 2016). however, as presented in this research, the application of rights outlined in the constitution is not all inclusive, especially for children with disabilities. as supported in an opinion critique by liebenberg (2017), the constitution is a model for human rights but in reality, these are only enjoyed by a selective few. the rights of children are outlined in section 28 of the constitution, which reinforces that the child’s bests interests are paramount in all matters concerning the child (republic of south africa 1996). fundamentally, in relation to this research, the right to basic education is pronounced in section 29(1) of the constitution, but as contested by other researchers, there is no legal clarity on the quality of education (donohue & bornman 2014). thus, to overcome that deficiency and to establish the parameters of this study, the researcher adopts the perspective of mcconnachie, skelton and mcconnachie (2016), which states that basic education represents two important aspects. firstly, ‘basic’ is interpreted as the education level computed based on time; secondly, ‘education’ focusses on the learning content, for instance, arithmetic reading and skills (mcconnachie et al. 2016). this definition is in sync with the world declaration on education for all, which focusses on minimum levels of literacy, numeracy and essential life skills (united nations, educational, scientific and cultural organization [unesco] 1990). this furthermore prompts the need for detailed policy frameworks, such as the south african schools act 84 of 1996, which is the first port of call on contextualising basic education by making it compulsory for all children from the age of 7 to 15 years or the equivalent grade 9, whichever comes first (republic of south africa 1996; strohwald 2021). this legal instrument is an architect of making basic education available, accessible and affordable for every child. the act also contains regulations relating to the minimum uniform norms and standards for public school infrastructure, which outline acceptable and adequate measures for access to basic education. the regulations attempt to provide a timeline to eradicate school infrastructure backlogs and legal binding standards for provincial education governments to be held accountable (gamede 2020). consequently, the juma musjid legal case in south africa underpins the nature and context of basic education (juma musjid v essay 2011). the case that was between juma musjid primary school and the department of education is significant because it was the first time the constitutional court of south africa considered the right to basic education in relation to the best interests of the child principle. this results from the failure of the constitution on providing an exact definition of basic education (arendse 2020). the case judgement aligned with article 29 of the crc and section 29 of the constitution, which focussed on the right to basic education. the musjid case concluded that ‘access to a school’ is a necessity for achieving the right to basic education (juma musjid v essay 2011). contextualisation of inclusive education shikwambana and fourie (2023) highlight that inclusive education is concerned with removing all barriers to learning and promoting the participation of all students, including those vulnerable to exclusion and marginalisation. furthermore, murungi (2015) states that the term is mainly applied in the context of persons with disabilities to promote access to education in society. the universal declaration of human rights adopted in 1948 declares that ‘everyone has the right to education’ (united nations 1948:7). the provisions of articles 2(2), 23(1) of the crc and article 13(1) of the acrwc demonstrate that all children with special needs have the right to education without discrimination on any grounds (acrwc 1990; crc 1989). the focus on inclusive education is elaborated further in article 24(2)(a) of the crpd, which calls for state parties to ensure a non-discriminatory, inclusive education system in which: persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability. (crpd 2006:17) although most countries seem to share the same ideology and commitment towards education for learners with special needs, the implementation of inclusive education has not been successful (mokaleng & möwe 2020). for example, the crpd gives specific guidelines to promote inclusive education, such as, using braille, alternative script, augmentative and alternative modes of teaching, but this has not been the reality, especially in rural schools in south africa. moreover, the high level of exclusion is a culmination of several factors, including, limitations in policy, no strategies of delivery and the erroneous assumption that inclusive education is expensive to implement (gow, mostert & dreyer 2020). thus, ssenyonjo (2017) reiterates that the non-domestication of regional and international treaties perpetuates the violation of rights on children with disabilities. in response, the government of south africa embedded the crpd into the white paper 6 which specifically addresses special needs education within a policy framework (walton & engelbrecht 2022). the white paper 6 is the key framework for supporting an inclusive education system in south africa. it is worth reinforcing that white paper 6 is not a law but rather a policy document that helps the government to account for specific deliverables on inclusive education. the policy provides a broader scope to address the diverse needs of learners who experience learning barriers. the historical context of south africa is significant because the education system during apartheid was discriminative, not only based on race but also for children with disabilities (deghaye 2021). scholarly research in south africa has explored the lack of inclusive education for learners with disabilities, especially in the rural areas, because of the scarcity of resources (banks et al. 2022; chirowamhangu 2023). therefore, inclusive education seeks to confront exclusionary policies that violate children’s rights and result in excessive discrimination. achieving inclusive and equitable quality education for all requires increasing efforts, especially in sub-saharan africa for vulnerable populations, including persons with disabilities and poor children in rural areas. state parties are expected to remove legislative and policy barriers to the inclusion of children in primary and secondary education and repeal any existing legislation that define any group of children with disabilities as ‘ineducable’. matland’s top-down implementation approach to white paper 6 policy south africa’s inclusive education policy has been known as ‘symbolic implementation’ because of failure and non-implementation, such as the case of the white paper 6 that was viewed an important intervention when published in 2001, but the implementation has yielded little success in the eastern cape province (adewumi, mosito & agosto 2019). in addition, walton and engelbrecht (2022) highlight that the poor implementation of inclusive education policy in south africa is because of the lack of political will. specifically, the eastern cape department of education has been characterised by politicisation of the allocation of resources (kota et al. 2018). for example, a study on the eastern cape found that it was the fastest south african province to reach a million coronavirus disease 2019 (covid-19) vaccinations, but when it comes to issues related to education, the province is still plagued by the poor education infrastructure and the highest number of pit latrine toilets (chirowamhangu 2023). literature highlights the lack of clarity on the extent of inclusiveness in the white paper 6 policy document (hudson, hunter & peckham 2019). in support of this view, makoelle and burmistrova (2020) reveal that there remain many school-level and cultural barriers to inclusion. for instance, scholars show that with regard to cultural barriers children with disabilities are discriminated because disability is attributed to family sin, witchcraft and conflict with the ancestors (ndlovu 2023; yaacob et al. 2021). this makes it difficult to implement a bottom-up approach because of the diversity of cultural, social and religious views on disability. another illustration is based on the economics of implementing the policy, as dehnhardt, grothmann and wagner (2022) purport that the policy yields cost-effective benefits. but as challenged in recent studies, this seems unrealistic in south africa considering the substantial increase in provincial funding (walton & engelbrecht 2022). furthermore, the republic of south africa (2022) shows that the department of education in the eastern cape province failed to implement initiatives aligned with white paper 6 because it was underfunded. thus, the top-down approach helps to streamline the objectives of the policy, actions needed, delegation of duties to ensure children with disability have access to basic education. therefore, matland’s top-down approach is instrumental in policy implementation because it provides clarity on the goals of the policy (hudson et al. 2019). this means the government and policy makers articulate fundamental principles, guided by specific mandates, and establish a mechanism to account for achieving the policy. this calls for clear and effective legislative frameworks to support inclusive education in south africa (ramango & naicker 2022). in the process, this helps to eradicate negative attitudinal perspectives from legislators, educators and learners to foster inclusive participation of children with disabilities in the mainstream school system. in a similar case study on inclusive education in the eastern cape province, the researchers concluded that there was lack of policy coherence and accountability between the provincial department of education and the national department of education (bipath, tebekana & venketsamy 2021). however, shukia (2020) argues that the approach fails to recognise the complex implementation structures, thus, giving policy makers exclusive control even when they lack proper understanding of the realities faced by persons with disabilities. research methods and design study design the study was conducted from may to july 2020, at the peak of covid-19 pandemic. in response, the government of south africa, through the disaster management act, introduced lockdown restrictions to contain and mitigate the virus (republic of south africa 2020). the study adopted a qualitative research design anchored on an interpretive paradigm. scholars support this approach as it allows diverse findings rather than having imposed dominant interpretations (kumar 2019; thanh & thanh 2015). a qualitative research approach seeks an in-depth, holistic understanding of people’s lived experiences within their natural environment (flick 2018). the qualitative design is flexible, responsive and provides detailed descriptions of the issues being investigated (creswell & creswell 2022; shikwambana & fourie 2023). this methodology contextualises the realities of education challenges experienced by children with disabilities in the eastern cape province. study setting the eastern cape province of south africa has the second highest rate of child poverty at 79%, with an education system described as an ‘education crisis’ engraved in poverty, failed social welfare reforms and poor infrastructure (ngumbela 2021; stats sa 2020:7). in addition, more than 60% of its populace reside in rural areas (stats sa 2019). this not only shows the extent of poverty in the area but also anchors the research on a demography, which is often overlooked, the rural population. the study was conducted in the nelson mandela bay and buffalo city municipalities, covering the amathole, sarah baartman, chris hani and or tambo districts. this included areas such as, gqeberha, east london, qonce, dikeni, middeldrift, mthatha, port alfred, komani, seymour and fort beaufort. study population and sampling the research population comprised 50 representatives. the breakdown of participants included 20 special needs schools, 15 non-governmental organisations (ngos), 10 community leaders and 5 government departments from the eastern cape province. the participants were selected using the non-probability method in the form of snowball sampling. kirchherr and charles (2018) describe snowball sampling as the process by which one interviewee gives the researcher the name of at least one more potential interviewee. thus, using this method, the probability of selecting the participants was known by the researcher (kumar 2019). it also helped to ensure that the participants were competent with the relevant knowledge on the issues discussed in the research. the method was applied in all the categories of participants. for example, the interviews representatives from the department of basic education would provide contacts of participants working on other programmes, such as psychosocial support that works with learners with special needs. similarly, because many of the ngos have a network that they use when lobbying for the rights of children with disabilities, it was easier to get recommendations on ngos, which could assist with the interviews. data collection data were collected using semi-structured, key informant interviews. this supported the integration of open-ended questions to allow for an honest and open exchange, whereby the participants responded based on their own perspectives and experiences (busetto, wick & gumbinger 2020). because of the covid-19 restrictions, some interviews were conducted telephonically and others using online platforms; such as microsoft teams and zoom. there was no need for any translation services as all the participants were comfortable with conducting the interviews in english. a maximum of 30 min was scheduled per interview, with at least 15 min set aside for online connection delays. this proved to be a vital intervention because the most common challenge during the interviews was poor network connectivity; consequently, some interviews had to be rescheduled or alternatively conducted telephonically. data analysis the atlas.ti 8 research software was used to analyse data through content analysis. researchers have supported the use of qualitative content analysis to identify and categorise data into themes (bengtsson 2016). atlas.ti is a computer-assisted qualitative data analysis software, which allows researchers to effectively code data and create interacting themes to interpret data (adelowotan 2021). in addition, as supported by paulus and lester (2016), the use of atlas.ti is extensive, robust and much faster compared the manual coding process. this proved to be a viable option considering the large volume of interview transcripts from the 50 participants. the interview transcripts were colour coded into specific themes. the study guided based on previous research by moosa-tayob and risenga (2022) and jackson et al. (2016), developed a six-stage which involved familiarisation, coding, searching for themes, reviewing themes, defining and naming themes and writing the research report. as for coding, an inductive approach was followed, which allows for a bottom-up perspective, whereby the researcher uses the participants responses to generate and interconnect themes (creswell & plano clark 2017; tenny et al. 2021). ethical considerations steffen (2016) presents that it is with uttermost importance that in any research ethical procedures and considerations must be followed. the study was registered and approved by the research ethics committee at the university of pretoria (ethics approval number: hum035/0820). in addition, participation was voluntary, and permission to conduct key informant interviews was obtained from all the participants, through informed consent. thus, all the information was treated as confidential. la rossa and bennett (2018) add that the participant should have the legal capacity to give consent. all participants signed informed consent forms prior to the interviews. research findings the right to basic education cannot be implemented in isolation while ignoring other fundamental rights prescribed in the constitution, education policies and ratified treaties. to fully comprehend the collected data, the researcher focussed on the six main basic education challenges on children with disabilities, based on the participants’ responses. limited number of special needs schools the major challenge raised by the participants during the research was the issue of insufficient available schools to cater for the needs of children with disabilities. these reflections were illustrated in the following interview excerpt: ‘we don’t have enough schools, very minimal, especially for children with disabilities. since we are here in port alfred, you will find that the nearest centre is far away.’ (p3, ngo representative, port alfred) the above-stated contribution reflects on the situation in port alfred, whereby there are few special needs schools available, and in most cases, these children have to travel further to the nearest school. the situation as expressed by another participant is worse in rural areas, where the only available special needs school is located in the urban city of gqeberha: ‘for special schooling here, we only have 2 government special schools in gqeberha. therefore, you can understand there’s a massive waiting list or sometimes, you know a child is on a waiting list. and obviously, there are specific criteria which you need to perform to be placed in a special school. most children or you know, are on waiting lists in stages. not enough special schools to accommodate all our learner’s needs. the waiting list of up to 550 learners per annum. over 2500 children are still at home because they are intellectually challenged.’ (p5, special needs teacher, ndevana) as stated in the quote, the participants from a rural area expressed frustration because of the excessively long waiting list of 550 learners per annum, with over 2500 children with special needs reported to have no access to education. this similar trend was noticed in other rural areas, such as matatiele and nqanqarhu. scholar transport concerning scholar transport, children with disabilities have to travel long distances to the nearest school. as a result, the child might not be able to walk every day to school, and there is an additional cost required for safe transport. these sentiments were shared by one of the participants: ‘so, to go to school, they have to travel 320 km from the nearest city. or in some areas, the nearest school would be 60 km daily.’ (p2, community leader, kwazakhele) thus, children with special needs are severely disadvantaged when they have to travel long distances to school and yet children without disabilities will easily walk or have access to cheaper public transport options when travelling to school. this view is reflected further: ‘some of the children can easily walk. but some of the special schools are in uitenhage, sunshine, moakley and besa, so we have to go abroad. we have to drive them every day usually two loads to transport all the children. then on rainy days the rest of the staff just have to pull in and get in a car and drive the kids.’ (p8, community leader, nqanqarhu) this shows that some children had to walk to special needs schools and will require assistance to make sure they reach the school safely, as some of them have to cross rivers and dilapidated bridges to get to school. enrolment criteria apart from the limited number of special schools, the other area of contention during the research was the criteria used to enrol learners with special needs. this was expressed by one of the participants as follows: ‘but the specialised school takes children from specific ages from the age of 14, which is a school of skills basically, and that child needs to be on a grade 5 level academically to be able to do those things. but some children do not fall on that level or fall above the percentile or below. and because of such a system they end up placed at schools that don’t have an emphasis on academics, which kind of just exacerbates their motivation.’ (p9, special needs teacher, gqeberha) the response shows the criteria used is the age of the child; unfortunately in this case, this would mean that children with disabilities above 14 years might struggle to get access to a special needs school. other than age, the criteria used to distinguish disability was inconsistent. another respondent reported: ‘and that is an enormous problem class because there are no remedial [sic]. there is only one special school in east london, [name withheld] but it’s full of kids who are significantly disabled. so, they’re either significantly intellectually disabled or physically disabled. and these kids are not they are just “slow” if you want to use that term. and the sadness for me is that the local public school with less than a half kids will not give the kids the right standard of examination so that they get more than 50%. but in fact, they’re not achieving. they do it so that they can make themselves look better. and those kids will proceed; whereas our kids who will be performing at the correct level will not be accepted.’ (p16, special needs teacher, east london) the frustrations expressed show various inequalities in the criteria used for the acceptance of children with special needs. the researcher was astonished by the perception in public schools, whereby the term ‘slow’ was used to describe children with special needs. notably, during standard examinations, they were awarded free marks to proceed to the next level. the reflections show the bias used to assess children with special needs between private and public schools. in terms of assessment, the participant indicated that intellectually and physically disabled children are not assessed with the national standard of examination. lack of psychosocial and expert support the need for psychosocial and expert support helps to easily identify learning challenges and quickly prescribe for relevant assistance. this was raised by one of the participants as follows: ‘let me give you a scenario in the eastern cape, we have 61 social workers and 63 psychologists, and we do not have enough people to provide psychosocial support. even with the learner support agents, we have about 300 of them, so can imagine, versus the number of schools that we have.’ (p32, government representative, bisho) the response shows that there is lack of expert assistance concerning the large population of vulnerable children in the eastern cape province. expert assistance is not limited to social workers and psychologists but involves a wide range of specialists to assist learners with special needs. this is explained by the response: ‘many of our learners also present with comorbidities such as physical, psychological, and neurological disabilities. we have social workers, a physiotherapist, an occupational therapist, an audiologist, an educational psychologist, and a nursing sister. all these are paid for by the school because of a lack of funding from the government. there is a lack of experts in the department to offer support and guidance to children with special needs.’ (p45, ngo representative, ndevana) the above-stated response summarises the challenges experienced in providing expert assistance for children with special needs. it shows that there is a lack of funding to support such professionals, because many of these challenges are not only human resource related, but quality equipment is also needed to ensure that specialists operate at full capacity. the research findings reveal that these services are only available in some schools and a large percentage of rural schools do not have access to expert assistance. this assertion makes matland’s top-down approach relevant because in this case, it will initiate the availability of funds to allow the required expert human resources to be delegated in all special schools, even in the most rural areas. water, sanitation and infrastructure section 27(1)(b) of the constitution and water services act 108 of 1997 highlights that access to clean and safe water is a basic right (republic of south africa 1996). access to basic education takes into consideration the state of sanitation and hygiene, which includes the availability of toilets in schools, provision of water and hygiene. however, one of the participants expressed their frustration on the state of sanitation: ‘you would never say that we have schools that have pit latrine toilets. so, for me, it’s just a little sad that we were fixated on optics and not producing tangible results in education in the province.’ (p30, community leader, komani) in addition, another participant highlighted that: ‘but we’re still sitting with over 1000 schools with pit latrines. the second timeline was on school infrastructure, we still have hundreds of schools with improper infrastructure, with poor quality materials from zinc, asbestos, and all those things.’ (p28, ngo representative, mthatha) the sanitation appropriate for education (safe) programme aimed at eradicating all pit latrines toilets by 2023 has yielded little progress, as the eastern cape province still has the highest number of schools with pit latrine toilets (amnesty international 2020). the extent of socio-economic inequalities between urban and rural areas is magnified in these findings as areas in more urban provinces (for instance, gauteng, northern cape and western cape) have no pit latrine toilets recorded in the schools. human rights watch (2021) criticises the government of south africa for its failure to implement safety measures for children with disabilities. in south africa, rural areas mostly lack the social and economic viability needed to sustain technological improvement (cristobal-fransi et al. 2020; hall 2019). section 28(2) of the constitution recommends that the interests of the child are paramount; therefore, the safety of a child at school is significant. however, issues pertaining to lack of infrastructure development were cited during the research: in terms of the norms and standards, by 29 november 2016, all schools must have access to some form of power supply, water supply and sanitation. schools entirely made of inappropriate materials, such as mud, metal, asbestos or wood, must be replaced with new schools. in the eastern cape province, a lot of our work has been around creating accountability that’s linked to the law of norms and standards. (equal education 2016:5) in terms of section 4(3)(a) of the norms and standards act, ‘all schools built entirely from mud as well as those built entirely from materials such as asbestos, metal and wood must be prioritised’. infrastructure is not only limited to the building materials but also includes the school structure to improve the mobility of children with disabilities. such as in the case of wheelchairs, the participant stated that: ‘the policy says we should have an inclusive education, but on the ground, they cannot accommodate even a child with a wheelchair, let alone a child with an intellectual disability.’ (p23, ngo representative, seymour) the provisions suggested should also include ramps, walkways, restrooms and extra space to accommodate the free movement of wheelchairs in schools. in this way, the right to basic education includes providing appropriate school infrastructure, which is safe and does not endanger the life and welfare of children with disabilities (du plessis & mestry 2019; grimes et al. 2023). coronavirus disease 2019 pandemic the first case of covid-19 in south africa was recorded on the 5th march 2020 (giandhari et al. 2021; pillay van wyk et al. 2020). in response to the high infection and death rate, the government of south africa declared a state of emergency in accordance with section 37 of the constitution and the state of emergency act 64 of 1997. the covid-19 pandemic was cited as a major challenge by 72% of the responses. this was mentioned by one of the participants as follows: ‘because of such challenges, we are left behind, and with physical learning, because of covid, they’re only allowed to attend classes once or twice depending on the lockdown restrictions. in some cases, students have gone months without access to learning material.’ (p6, special needs teacher, chintsa east) while these challenges prompted the need for innovation through online learning. special schools, especially in the rural areas of the eastern cape province, were not prepared for these changes. as illustrated by one of the participant: ‘currently, we are working in a climate that uses the hybrid model which also physical and virtual learning. the challenge is that working with learners from previously disadvantaged backgrounds means their economic status does not necessarily allow them to participate in virtual learning because of various reasons such as, they might not have cell phones or laptops and limited access to internet.’ (p38, special needs teacher, nkwenkwezi) dube (2020) remarks that during the covid-19 pandemic, many schools were limited because of the lack of access to online learning. this proved that the chasm between the ‘haves and the have-nots’ especially when considering the socio-economic inequalities in south africa is actually true. thus, following the recommendations of the republic of south africa (2023), the government calls for the need to ensure that online learning initiatives are fully accessible for learners with disabilities. discussion overall, the research found that children with disabilities in the eastern cape province faced multiple barriers to education, which are largely operational at the education system level. the study summarises the challenges facing learners into four key categories, namely, capacity, mobility, resources and disaster response on children with disabilities. because of such limitations, findings have shown that children with disabilities are less likely to access education (mizunoya, mitra & yamasaki 2018; simo fotso et al. 2018; sumbane et al. 2023). the capacity-related challenges include a limited number of special needs schools and enrolment criteria. zwane and malale (2018) similarly revealed that the lack of education facilities for children with disabilities contributes towards overcrowding in the few available schools. while the aspect of overcrowding was not reflected in the participants’ responses, if the issues presented in this study are not urgently addressed, the quality of education for children with disabilities is compromised. moreover, the research showed that the limited number of special needs schools challenges is intertwined with mobility challenges, because children with disabilities had to travel long distances, going as far as 60 km to the nearest school. previous studies have documented scholar transport challenges in the eastern cape province including backlogs in transport provision and the use of unroadworthy vehicles to transport children (chirowamhangu 2023; kota et al. 2021). this has been extensively articulated in existing literature (duri & luke 2022; kett, cole & turner 2020; park & chowdhury 2018). in addition, barriers are not just limited to the availability of scholar transport but should prompt continuous advocacy to address negative attitudes by transport drivers and aspects pertaining to the safety, security and cost of scholar transport for learners with disabilities (calle et al. 2021; gogiashvili et al. 2019). the resource-based challenges were echoed in a research focussing on children with autism spectrum disorder (asd) in limpopo, which similarly to the eastern cape is predominantly a rural province with extensive poverty levels (sumbane et al. 2023). this category of barrier includes lack of water, poor sanitation, dilapidated infrastructure, psychosocial and expert support. in their assessment, equal education (2016) and odeku (2022) revealed that primary schools in the eastern cape province are exposed to pit latrine toilets with poor hygiene and broken sanitation infrastructure, which are issues of concern for learners with special needs. furthermore, with regard to poor physical infrastructure, mpu and adu (2021) on the south african perspective state that poor school physical infrastructure is one of the major hindrances faced by learners with disabilities. in their comprehensive research of the eastern cape province, they highlighted that most school buildings had long staircases, which could not be accessed by learners with disabilities (mpu & adu 2021). psychosocial and expert support involve assistance from comprehensively trained personnel with best inclusive practices (amod 2015; engelbrecht et al. 2015). this perspective is highlighted in previous literature on inclusive education (forsberg & schultz 2023; pillay, patel & setlhare-kajee 2023). as a researcher, i concur with this view from a structural functionalist perspective on disability, which advocates for the awareness of inclusive education on family and community structures. in relation to disaster response on children with disabilities, specifically with regard to the covid-19 pandemic, the world health organization (who) confirmed that learners with disabilities were impacted more significantly by covid-19 (who 2022). in view of online learning, tremmel et al. (2020) show that because of covid-19, there was little planning and resources to accommodate remote learning, especially in rural localities. moreover, online learning for learners with disabilities was not only limited to the mode of instruction, but scholars extend this scope to incorporate the frequent physical contact required to carry, lift and feed students while learning (kuper et al. 2020). consequently, when responding to disasters, such as in the case of covid 19, governments should allocate all necessary resources and prioritise communication with all relevant stakeholders (beckmann & reyneke 2021; magedi et al. 2023). therefore, the matland’s top-down approach to policy implementation helps to reduce the gap between the actual inclusive policy and practice. this is achieved by clearly defining the set goals on policies to support learners with special needs. the literature in this research shows that there is no lack of policy on children with special needs, that is, from the south african schools act to the white paper 6 on inclusive education. but there are not clear-cut guidelines and timelines to address the challenges raised in this research. for example, the white paper 6 from its inception had a 20-year provision to reach 380 special schools (department of education 2001), but there are no guidelines and timeframes to address the resource-based and disaster response challenges. the covid-19 pandemic was meant to be a wakeup call, that if no tailor-made policies are in place, the most vulnerable are affected. donohue and bornman (2014) support that reducing the ambiguity in policies promotes the inclusion of children with disabilities in education. limitations the use of online and telephonic methods of collecting data was a challenge, considering the poor network connectivity and lack of internet access. as a result, some interviews had to be rescheduled. furthermore, the study was conducted at the peak of the covid-19 pandemic, and because of lockdown measures, some participants had an intensive workload. moreover, because of travel restrictions, other participants were in different time zones, and the interviews had to be re-scheduled accordingly. it was difficult to accommodate all interviews; therefore, some interviews were conducted late at night or early in the morning based on the participants’ preference. to assist with time management during data collection, the interview schedule was changed depending on the participants’ responses and the thematic approach helped to navigate through the questions. in terms of the language of communication, though all the participants were comfortable to conduct the interviews in english, there were few instances whereby the questions had to be restructured to assist the participants to best express themselves. scholars prescribe that the quality of interview depends on the skill of the researcher to listen carefully to the participants’ responses and navigate the responses focussing on the research questions (cairns-lee, lawley & tosey 2022). recommendations in response to the participants’ responses, the following recommendations are proposed to address the basic education challenges of children with disabilities in the eastern cape province: to improve engagement with local communities and ngos, especially in the rural areas, the voices of vulnerable people in marginalised areas deserve to be heard. provincial government department of basic education must put measures to delegate and account for resources to support learners with disabilities. develop mechanisms to monitor and evaluate progress on the implementation of the white paper 6 and other regional and international treaties. construct special needs schools improve the quality of infrastructure, provide scholar transport and develop working opportunities to attract expert support staff to ensure improved service delivery in rural areas. conclusions the article using the case study of the eastern cape province reflected on the challenges facing children with disabilities with regard to access to basic education in south africa. the findings show several challenges including the limited number of special needs schools, enrolment criteria, lack of psychosocial and expert support, scholar transport, water, sanitation and infrastructure and the covid-19 pandemic. the research acknowledges matland’s top-down approach as a roadmap to effectively implement policies to support children with disabilities. this helps to provide clarity on the context and accountability measures on implementing the white paper 6 on special needs education. acknowledgements i would like to thank the participants for their contributions and inputs during the research. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contributions r.c. is the sole author of this research article. 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qualitative study in malaysia’, international journal of environmental research and public health 18(16), 853–860. https://doi.org/10.3390/ijerph18168532 zwane, s.l. & malale, m.m., 2018, ‘investigating barriers teachers face in the implementation of inclusive education in high schools in gege branch, swaziland’, african journal of disability 6(7), 391–404. https://doi.org/10.4102/ajod.v7i0.391 abstract introduction methodology results discussion limitations implications for physiotherapy practice conclusion acknowledgements references about the author(s) roline y. barnes department of physiotherapy, university of the free state, south africa jennifer jelsma division of physiotherapy, department of health and rehabilitation sciences, university of cape town, south africa romy parker division of physiotherapy, department of health and rehabilitation sciences, university of cape town, south africa department of anaesthesia and perioperative medicine, university of cape town, south africa citation barnes, r.y., jelsma, j. & parker, r., 2019, ‘improvements in health-related quality of life and function in middle-aged women with chronic diseases of lifestyle after participating in a non-pharmacological intervention programme: a pragmatic randomised controlled trial’, african journal of disability 8(0), a428. https://doi.org/10.4102/ajod.v8i0.428 original research improvements in health-related quality of life and function in middle-aged women with chronic diseases of lifestyle after participating in a non-pharmacological intervention programme: a pragmatic randomised controlled trial roline y. barnes, jennifer jelsma, romy parker received: 09 oct. 2017; accepted: 03 oct. 2018; published: 25 feb. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: musculoskeletal diseases consume a large amount of health and social resources and are a major cause of disability in both lowand high-income countries. in addition, patients frequently present with co-morbid chronic diseases of lifestyle. the area of musculoskeletal disease is restricted by a lack of epidemiological knowledge, particularly in lowand middle-income countries. objectives: this pragmatic randomised controlled trial assessed the benefits of a 6-week physiotherapy intervention for middle-aged women with musculoskeletal conditions compared to usual care. method: a weekly 2-h educational programme utilising a workbook, discussion group and exercise class was presented for the intervention group, while the control group received usual care. the primary outcome was health-related quality of life. parametric and non-parametric data were used to determine the equivalence between the groups. results: twenty-two participants were randomised to the intervention and 20 to the control group. the control group demonstrated no within-group improvement in health-related quality of life items, compared to significant improvements in two items in the intervention group. the change in median utility score within the intervention group was twice as large as the change in the control group. with regard to self-efficacy, the intervention group demonstrated significant within-group changes in perceived management of fatigue and discomfort. conclusion: the positive impact of the intervention on the participants suggests that the programme should continue at the clinic in question, but should be presented at a more convenient time for participants who work, as recruitment to the study was less than anticipated. primary health care systems in south africa urgently need to put structures in place for effective management of the functional impact of chronic diseases of lifestyle and musculoskeletal conditions. it is time for physiotherapists and possibly other health care professionals to participate in the development of appropriate community level interventions to address the functioning and quality of life of individuals living with the diseases. introduction musculoskeletal conditions (msc) consume a large amount of health and social resources and are a major cause of disability in both lowand high-income countries (brooks 2005; carmona et al. 2001; chopra 2009). it is predicted that ageing populations will require more and more relief from chronic pain and disability and that the prevalence of msc will continue to rise (connelly, woolf & brooks 2006). this is particularly true in south africa, because of the epidemiological transition that is rapidly taking place. in south africa, the majority of the population are cared for in primary health care clinics (phc) that currently provide basic services to low-income communities in urban, peri-urban and rural areas (lewis, eskeland & traa-valerezo 2004) and are responsible for the ongoing management of chronic diseases of lifestyle. at present, the management of these conditions relies heavily on pharmacological management, which may be expensive and can result in unwanted side effects. a holistic approach to the care of msc might be more effective and impact not only on the attendant pain and functional limitations of msc but also on the management of other chronic diseases of lifestyle. preventative strategies, for example encouraging moderate physical activity, encouraging weight loss, eating nutritious foods, not using tobacco products and avoiding the consumption of alcohol (pfleger 2007), can, to some extent, ameliorate the growing burden of disease because of ageing (brooks 2006). a large percentage of chronic diseases of lifestyle are attributed to sedentary lifestyles, and the prophylactic effects of physical exercise have been described and researched (connelly et al. 2006). many of the preventative strategies for both msc and chronic diseases of lifestyle including hypertension, diabetes mellitus type ii and obesity are therefore underpinned by moderate physical exercise and proper nutrition (lee et al. 2012). the beneficial effects of exercise interventions, which target behaviour, have been demonstrated in several south african studies. for example, an improvement in health-related quality of life (hrqol) and health-related behaviours was documented in employees of clothing or textile manufacturing companies in south africa who participated in a 6-week intervention programme utilising education, exercises, goal setting and pacing (edries, jelsma & maart 2013). another study on the management of pain in a group of south african women from similar socio-economic and cultural background to those targeted in this study was performed by parker, jelsma and stein (2016). the study concluded that a 6-week peer-led exercise intervention, supported by a workbook, was an efficacious method to treat pain in amaxhosa women living with hiv or aids in south africa (parker et al. 2016). it was thus hypothesised that the development of an effective exercise and education programme using cognitive behavioural principles (stajkovic & luthans 2002), specifically targeting chronic diseases of lifestyle and msc through lifestyle changes and exercise, could possibly improve the hrqol of participants. cognitive behavioural principles are based upon the social cognitive theory, a theory involving a triadic reciprocal causation model in which understanding, behaviour and the environment all dynamically influence each other (gist & mitchell 1992). the theory includes motivational and self-regulatory mechanisms and explains the nature of the bidirectional reciprocal influences through five basic human competencies including vicarious learning, symbolising, forethought, self-reflection and self-regulation (stajkovic & luthans 2002). as noted, the model has worked well in the south african context, but has not yet been tested within a phc context with women with msc who are at risk for chronic diseases of lifestyle. a non-pharmacological 6-week programme, informed by the results of a systematic review (barnes 2016) conducted by the first author and incorporating elements of the programmes used in the above two south african studies, was developed. the programme considered adult learning principles, dietary information (determined during the survey), as well as practical considerations and safety aspects in its development. this study aimed to determine the effectiveness of this intervention in middle-aged women presenting with a musculoskeletal disorder, with or without the co-morbidities of hypertension, obesity or diabetes mellitus type ii. the objectives were to determine whether the programme would result in a significant difference in hrqol (primary outcome measure), physical function and self-efficacy. methodology a pragmatic (alford 2006), experimental randomised controlled design was undertaken in a phc clinic in the free state province of south africa. as msc are more common in middle-aged women (brooks 2005; minas et al. 2010; rollman & lautenbacher 2001), and the intervention was intended to be contextually and gender relevant, women between the ages of 40 and 64 years who screened positive for msc, using the copcord screening tool (copcord), were recruited. the participants were required to have a minimum literacy level equivalent to 4 years of schooling to be able to complete and understand the workbook. musculoskeletal conditions was defined as experiencing pain, aching, swelling or stiffness in or around joints or back which was not related to an injury or accident. participants also needed to be able to understand english and or sesotho, have access to a telephone and be willing to commit to the intervention. participants with co-morbidities including hypertension, diabetes mellitus type ii and or obesity were eligible for inclusion. however, those with other chronic diseases including stroke, depression, cancer, cardiovascular diseases (coronary heart disease) and chronic respiratory diseases were excluded. those who were assessed as being at risk for exercise as determined by a qualified medical practitioner, and those with diagnosed neurological disorders or confined to a wheelchair, were also excluded. a survey of msc was conducted prior to the intervention study (barnes, jelsma & parker 2018). those participants of the survey who had indicated their willingness and commitment to take part in the intervention were contacted. as it was hypothesised that the body mass index (bmi) of the participants might have an influence on the outcome, eligible women who confirmed their participation in the study telephonically were stratified according to three bmi levels (normal weight: bmi 18.5–24.9; overweight: bmi 25–30; obese: bmi >30) (world health organization 2015). randomisation was carried out for each group separately by the first author, using the microsoft excel random function to randomly divide the participants into a usual care group (control group) and an experimental group utilising the workbook. the sample size was based on previous studies in similar samples which utilised the primary outcome measure, the visual analogue scale (vas) of the eq-5d instrument in cape town (edries et al. 2013; jelsma & ferguson 2004). there is generally a large range of responses to the eq-5d-3l, as evident by the large standard deviations typically reported. values include the population norm of 78.55 (standard deviation [sd] 16.57) in western australia, 52 (sd = 19) reported by persons with back pain in the uk, and 66.8 (sd = 20.8) and 66.1 (sd 21.3) within samples of people with disabilities living, respectively, in urban and rural areas of south africa. as it was anticipated that the current sample would be more homogenous, an sd of 15% was chosen for the sample size calculation (janssen et al. 2013; mccaffrey et al. 2016). an estimated 37 participants were required in each group to detect a difference of 10%, with a sd of 15, a power level of 80% and a p-value of 0.05 (statistica version 7) (statsoft, tulsa, oklahoma, usa). the first author invited 182 women to participate in the study. the pilot study included 10 women to determine the viability and suitability of the intervention. the rest of the willing women were then included for the implementation of the intervention. instrumentation the 6-week intervention programme used in the study was developed utilising a workbook that was modified and adapted from previous workbooks successfully used in south african studies (parker 2013; parker et al. 2014;). adult learning principles were applied, and the intervention included physical exercise in group format, health education, facilitation of self-efficacy and self-management, decision-making skills, problem-solving skills and maintaining a balanced lifestyle. further included was dietary information, as well as safety aspects and practical considerations (parker 2013). a time period of 6 weeks was used for the programme as this is regarded as the minimum time required to effect a change in the hrqol of individuals (parker 2013) while also being a period of time which is not regarded as excessively long by patients (foster et al. 2007). the frequency of the programme was once a week with a duration of 2 h (1 h education and 1 h supervised exercises) (edries et al. 2013; fagard 2001; greer & ostwald 2015; kelley & kelley 2000; kruger-jakins et al. 2016; oliver & cronan 2005; parker 2013). standardised questionnaires were used to determine the hrqol and self-efficacy of the participants. health-related quality of life measured with the eq-5d-3l was the primary outcome of the study. the eq-5d-3l is a single index, generic measurement instrument devised to measure the health of an individual, developed by the euroqol group (euroqol group 1990). the eq-5d-3l uses five domains of function to investigate the hrqol of the individual: mobility, self-care, usual activities (this includes study, work, housework, family or leisure), pain or discomfort, and lastly depression or anxiety. participants are required to indicate whether they perceive themselves as having no problems, moderate problems or extreme problems with each domain. a vertical vas is also included in the instrument on which participants indicate their own perceived health state on a scale from 0 to 100, where the end points are labelled ‘worst imaginable health state’ and ‘best imaginable health state’ (van reenen & oppe 2015). the eq-5d-3l instrument has been validated in a variety of settings, including south africa and zimbabwe (jelsma et al. 2002, 2004), and in patients with diverse conditions, such as arthritis and cancer (rabin & de charro 2001). finally, the instrument yields disability weights or value sets which can be used to calculate quality-adjusted life years (qalys). this allows the researcher to use preference-based measures to calculate a numerical value for each health state (dolan 1997). the measurement tool selected for self-efficacy was the self-efficacy for managing chronic disease six-item scale (se-6) (lorig et al. 2001). the scale was specifically developed in the united states on arthritis patients to test the efficacy of chronic disease education programmes (brady 1997; lorig & holman 1998). the scale was developed from the more comprehensive and arduous chronic disease self-efficacy scales that consist of three sections. the sections include the 11-question self-management behaviour section, the 5-question general self-efficacy section and the 17-question self-efficacy section (lorig et al. 1996). the shorter version of the measurement tool includes the dimensions of emotional functioning of the individual, symptom control, communication with the physician and the role of function in the individual. participants are required to indicate on a numeric scale from 0 to 10 how confident they are about performing specific activities relating to their chronic disease. zero indicates that they are ‘not at all confident’ and 10 indicates that they are ‘totally confident’. the scale has been found to be valid and reliable for measuring self-efficacy in chronic conditions in several countries, including individuals living with chronic conditions in france, china, england, canada, mexico and australia (bélanger et al. 2015; lorig et al. 1996; siu et al. 2005); spinal cord injuries in hong kong (pang et al. 2009); dm ii in the usa (fogarty 2007); cancer patients in the uk (foster et al. 2015); hypertension in united states (hui lua et al. 2015), china and south korea (hu, li & arao 2013) as well as in primary care patients in the united states (bodenheimer, lorig & holman 2002). validation of the chronic disease self-efficacy scale (ses) has been carried out in spanish, german, english, afrikaans, isixhosa and zulu, but it has not been translated or validated into sesotho (freund et al. 2011; lacasse et al. 2015; peltzer et al. 2012; ritter & lorig 2014). the instrument was chosen as it had previously been successfully translated into a bantu language (isixhosa) and had been used effectively in intervention studies aimed at decreasing pain through improving self-efficacy and exercise (saw 2015). it is also short and does not take long to administer. exercise endurance was assessed with the 6-min walk test. the 6-min walk test is used clinically to determine function in patients with cardiovascular or pulmonary diseases. the 6-min walk test measures the maximum distance that a participant is able to walk in 6 min and is a useful measure because of its similarity to normal activities of daily living. according to steffen (2002), the test is a more appropriate measure of exercise endurance than maximal exercise capacity (steffen, hacker & mollinger 2002). the test has good test–retest reliability and good construct validity (enright et al. 2003; faggiano et al. 1997). all instruments were either available in english or sesotho, the local language, translated by linguistics using the standard forward and backward translation procedures, followed by cognitive debriefing to ensure cultural applicability and semantic equivalence. procedure a pilot study was undertaken with 10 participants to test procedures and check acceptability of the intervention. nine participants attended baseline measurements and a qualified medical practitioner screened and physically examined the participants to exclude any risk factors. all participants were declared fit to take part in the 3-week pilot intervention programme. after the first week, one participant withdrew because of work commitments, and therefore only eight participants completed the pilot study. the exact testing procedures were followed as described for the actual intervention. the results of the pilot study were excluded in the results of the main study because of the reduced length of the pilot study. the cultural acceptability of the exercises was also considered, and specific adaptations were made based on pilot participant feedback as to cultural acceptability. participants in the pilot study indicated, during the first exercise session, that they enjoyed ball and dancing activities. the research assistant therefore gave each participant the opportunity during the first session to have a turn to show the type of dance that they enjoyed the most – dancing then served as aerobic exercises during the following sessions. as part of cooling down at the end of the exercise sessions, cultural and traditional dances were encouraged. the participants fully engaged in the sessions by singing traditional songs while performing the dances. as the participants indicated that they enjoyed activities that involved balls, the research assistant after consultation with the researcher included activities utilising balls of different sizes. this resulted in no changes to the protocol. participants who had screened positive for msc a month earlier during the epidemiological survey, who had indicated their willingness and commitment to take part in the intervention, were contacted telephonically to invite them to enrol in the 6-week intervention programme. the researcher (first author) allocated participants to groups as they were recruited into the study. the research assistants who were responsible for administering the outcome measures were blinded as to the allocation. the research assistants were trained by the researcher to ensure that the tests were performed according to the procedures as described in the literature. the experimental group received a date and time for screening and a physical examination by a qualified medical practitioner to assess for risk factors, but no one was excluded on this basis. once all participants had been cleared for participation, they received a calendar indicating the time and dates for the intervention. all participants received reminder text messages of the dates for the baseline measures, and in cases where this was not possible, participants were contacted telephonically. an information leaflet containing information describing the details of the study was handed to both groups of participants in their language choice – english or sesotho. baseline and follow-up measures were obtained at the phc clinic. the control group, who were continuing with usual care, were requested to return in 6 weeks for follow-up measures. at the start of the first session of the intervention, participants were given information to explain why exercise is important, and how to effectively make use of the workbook during the structured education classes as well as at home. the aim of the workbook was to facilitate the development of self-management, decision-making skills, problem-solving skills, and obtaining and utilising resources to assist with managing the chronic disease (lorig & holman 2003). the workbook included sections on goal setting, problem-solving tasks and exercise diaries to facilitate skills acquisition. while the control group went about their daily lives as usual, the experimental group attended a weekly educational programme, discussion group and an exercise class lasting 2 h, for 6 weeks at the community hall. in the adapted and developed workbook ‘balanced lifestyle’, educational topics were specific to the population identified in the survey, which included middle-aged women living with hypertension, diabetes mellitus type ii, obesity and msc. the educational programme aimed at providing information on what each chronic condition was, type and method of exercise deemed appropriate to perform at home, management of common symptoms of msc, stress management and, finally, healthy food options, including portion sizes according to food-based dietary guidelines with a focus on weight loss. the last educational session included an action plan to continue as a successful self-manager. the american college of sports medicine guidelines were used to develop the exercise programme, which included aerobic, strengthening and stretching exercises (american college of rheumatology 2000; baker & mcalindon 2000; morey 1999; van baar et al. 1999). the researcher chose specific exercises, taking into account the safety needs of an older population and limited availability of equipment. a decision was taken that the duration of the supervised exercise programme would be started at 45 min during the first week and would be increased every week until 60 min of exercise was achieved during the third week, and this would then be maintained for the duration of the programme (american college of sports medicine 2010; mcdermott & mernitz 2006). the last 15 min would include physical games for the enjoyment of the participants (crutzen, van ’t riet & shor 2016). the first author emphasised that the aerobic exercises should be performed according to the borg scale level of ‘somewhat hard’ to ensure that participants were exerting themselves at the correct intensity. the level of exertion ‘somewhat hard’ has been found to reflect a 60% effort of maximum heart rate (borg, puoane et al. 2012). appropriate illustrations were used to indicate to participants what was meant by ‘somewhat hard’. the exercise programme was led by a trained research assistant fluent in sesotho. both the control group and the experimental group received clear instructions to adhere to their usual medical treatment. the end-point of data collection was after 6 weeks of the intervention programme. all participants were contacted telephonically to remind them of the date and time for the last measurements to be taken. as an ethical consideration, the workbook was offered to the control group at the end-point of data collection. arrangements were made with the community service physiotherapists and the physiotherapy students on the community block to continue with the structured programme at the community clinic on a weekly basis, if the results were shown to be beneficial. no remuneration was received by participants, other than reimbursement for their travel costs to attend the exercise sessions, as well as the baseline measurements and end-point measurements. data management and statistical analysis data were collected in hard copy and then captured by the first author on an excel spreadsheet and a second person verified the captured data by capturing the data on a separate excel spreadsheet to ensure accuracy before statistical analyses. analysis was performed jointly by a statistician, the researcher and one of the supervisors, who, by the nature of the data, were aware of group membership. the york tariff was used to calculate the index score (dolan 1997). the self-efficacy scores were summed and presented out of a maximum of 60 points. the results of those in the control group who did not attend for the second assessment at 6 weeks were excluded from analysis. descriptive statistics were used to describe the demographic characteristics of the participants. between-group design requires between four and eight times more subjects than a within group design to reach statistical power (bellemare, bissonnette & kröger 2014). as the study was underpowered and there were discrepancies at baseline in some variables, within-group and between-group analysis was performed throughout. in variables in which the baseline scores differed significantly, the t-test or sign test was used to compare the means of the differences over time. the paired t-test was used for normally distributed, numeric data and the wilcoxon signed rank or sign test for the ordinal, non-normal data. statistica (version 7) (statsoft, tulsa, oklahoma, usa) was used for data analysis. cohen’s d was calculated to determine the effect size, either using the z statistic yielded by the mann–whitney u or sign tests or the t statistic from the t-test results using the lenhart and lenhard (2016) online calculator. the 95% confidence intervals (cis) of d were calculated using the formula proposed by lee (2016). ethical consideration ethical approval to perform the study was obtained after a blind review from the human research ethics committee of the university of cape town (hrec 605/2013) and the ethics committee of the university of the free state (ecufs 185/2013). the trial was registered as a clinical trial at the pan african clinical trial registry (pactr201511000689333). results during the survey mentioned above, 1376 patients were assessed, of whom 573 did not have msc and were not eligible for the intervention study. of those with msc, 761 did not wish to commit to a 6-week, weekly intervention. subsequently, 42 participants were randomly assigned to the two groups, 20 to the control and 22 to the experimental group. five members of the control group were then lost to follow-up (figure 1). figure 1: flow chart of recruitment and participation. the mean age of the participants was 54.5 (sd = 6.8 year, range 40–64 years), and there was no significant difference in age between the two groups. as can be seen in tables 1 and 2, there were no significant differences in demographic profiles of the groups apart from the larger percentage of unemployed participants and fewer being on pension in the experimental group. table 1: comparison of the demographic characteristics of the two groups (n = 42). table 2: comparison of the education level and employment status of the two groups (n = 42). there was also no significant difference between the health variables of the control group versus the experimental group at baseline and at 6 weeks. the mean attendance rate at classes of the participants in the experimental group was 87.9%. as can be seen in figures 2 and 3, there was a decrease in the relative numbers of participants reporting problems in both groups in the five domains from baseline to the 6-week follow-up. the index and the vas scores were not normally distributed (shapiro–wilks p < 0.05), and non-parametric statistics were used for these data. as there were no comparative measurements for the members of the control group who did not return at 6 weeks, their results were also excluded from baseline. figure 2: baseline and 6 weeks frequency of responses to the five dimensions of the eq-5d-3l for the experimental group. figure 3: baseline and 6 weeks frequency of responses to the five dimensions of the eq-5d-3l for the control group. the summary statistics of the vas and index scores are presented in table 3. the median eq-5d-3l index scores in both the control and experimental group increased from baseline to 6 weeks, but this was only significant in the participants in the intervention programme (p = 0.010). the experimental group not only improved more (from 0.7 to 1.0) but also showed a significant between-group difference at 6 weeks (p = 0.019). there were no significant differences in rank ordering in any of the variables between groups at baseline and at 6 weeks. however, the ranking of mobility and the eq-5d-3l index had significantly improved in the experimental group at 6 weeks (table 4). the effect size in both cases was 0.4, indicating a small effect size. table 3: between-group comparison of rank ordering of health-related quality of life measures at baseline and at 6 weeks. table 4: within-group comparison of measures at baseline and at 6 weeks. the median eq-5d-3l index scores in both the control and experimental group increased from baseline to 6 weeks, but this improvement was only significant for the participants in the intervention programme (p = 0.010). the experimental group showed a significant within-group improvement (i.e. from baseline to 6 weeks) in all of the individual eq-5d-3l variables apart from self-care and on the vas. no significant within-group improvements were observed in the control group (table 4). the effect size over time was large in the mobility (0.9) and usual activities (0.9) domains and medium in pain or discomfort (0.5), anxiety and depression (0.5) domains and the index score (0.5). as the number of non-ties was small in the control group, the effect sizes were not meaningful in most cases. this improvement in the experimental group was further demonstrated by the significant within-group increase in the index scores (figure 4). the vas showed no within-group improvement, with the median score of both groups improving 10 points. figure 4: boxplots of within-group differences of eq-5d-3l index scores from baseline to 6 weeks. (a), experimental group, n = 22, and (b) control group, n = 15. the ses showed good internal consistency at baseline with cronbach’s alpha (α) = 0.887 and excellent internal consistency at 6 weeks after the intervention (α = 0.904). the scores, which are numerical, were normally distributed (shapiro–wilks p > 0.05) and parametric statistics were used. the control group’s score decreased, or remained the same in every component, apart from confidence in performing tasks. in contrast, the experimental groups’ perceived confidence in every component increased. the difference in fatigue at 6 weeks approached significance (p = 0.053) with a medium effect size, compared to small effect sizes for the other items. there were no within-group differences detected in the control group, but the 6-week scores on the fatigue and discomfort dimensions were significantly greater in the experimental group (p = 0.024 and p = 0.022, respectively, with medium effect sizes) with a trend towards improvement in managing symptoms (p = 0.076, small effect size) (table 5). four of the items in the control group showed a negative effect size, that is, the scores decreased from baseline to 6 weeks (table 6). table 5: between-group differences from baseline to 6 weeks in the self-efficacy scale. table 6: within-group differences in self-efficacy items. the overall score of the se scale for the control group decreased by 3.6, whereas the score of the experimental group increased by 6.45. neither change was significant, but the mean increase in the overall score of the experimental group shows a trend towards improvement (p = 0.055). the 6-min walk test results are numerical, but as they were not normally distributed (shapiro–wilk p < 0.05) non-parametric tests were used (table 7 and table 8). the experimental group performed significantly better at 6 weeks on the 6-min walk test (p = 0.009) than the control group. as the 6-min walk item was significantly different between groups, or approached significance at baseline, the change in score within groups was also calculated. the within-group change from baseline to 6 weeks was only significant in the experimental group (p = 0.020). table 7: between-group comparisons for the 6-min walk test. table 8: within-group changes for 6-min walk test. there were no adverse events in the experimental group. informal feedback received from the group indicated that there was general satisfaction with the content of the programme. the participants enjoyed the dancing and suggested that more dancing should be added to the programme. all participants requested that the researcher continue with the programme in the future. no negative feedback was received. discussion the results of the study were encouraging although underpowered. although not conclusive, the results indicate that the participants appeared to benefit from the intervention, particularly with regard to pain, fatigue and mood. the recruitment phase was somewhat disappointing, and many of the eligible potential participants did not respond to the recruitment invitation. although the sample was similar in most respects to the population, the larger number of older and unemployed participants in the experimental sample could indicate that those who were younger and employed were unable to make the time available to attend. as the sample was similar to the population in most respects, the results may be generalised with caution to similar populations, that is, middle-aged women attending phc who had msc. as reported in many studies of community dwelling participants, the most commonly reported problems on the eq-5d-3l were in the anxiety or depression, pain or discomfort, mobility and performing usual activities domains (arnold et al. 2004; jelsma et al. 2004, 2007). the high number of participants reporting pain was as per the inclusion criteria, as all had painful musculoskeletal disorders, but the majority in both groups also reported problems with anxiety or depression (72% across both groups). these figures are higher than the anxiety or depression reported by isixhosa-speaking individuals living with a disability in urban (50.8%) and rural populations (11.3%) (jelsma et al. 2007), while slightly lower than the 63.5% in the socially and culturally diverse suburb of woodstock in cape town (jelsma & ferguson 2004). the reason for the differences could be because of the socio-economic circumstances of the specific community. no information pertaining to scores for the 6-min walk test in a similar population could be found. however, the minimal clinically important difference for the 6-min walk test is an increase of 54 m in patients living with chronic obstructive pulmonary disease (rasekaba et al. 2009). both the control and the experimental groups improved by more than the minimal clinically important difference. the control group improved by 62.5 m, and the experimental group by 59.4 m. the larger improvement in the control group could be attributed to the testing effect or the demand effect that takes place during research (cohen et al. 2013). it has been reported by various studies that individuals living with the same amount of pain, but with different levels of self-efficacy, experience different levels of disability. therefore, the higher the self-efficacy levels, the lower the reported disability (greene et al. 2006; marks, allegrante & lorig et al. 2005; wideman & sullivan 2011; woby et al. 2007). a study conducted by oliver and cronan (2005) clearly indicated that women living with fibromyalgia displaying high levels of self-efficacy showed a decrease in their symptoms and an increase in their physical activity, compared to their counterparts with lower levels of self-efficacy (oliver & cronan 2005). there was evidence that the intervention resulted in improvement in the eq-5d-3l domains of pain or discomfort, anxiety or depression and the ses items of perceived ability to manage fatigue and discomfort. in addition, there was a trend towards improved mobility in the eq-5d-3l and in the overall ses scores in the experimental group. the importance of including culturally acceptable and enjoyable items in the programme (crutzen et al. 2016), such as dancing, was highlighted in the programme which improved the mood of the participants. it is possible that the ses items improved through the education sessions and the interaction with their peers. despite a lack of improvement in the impairment and functional measures, the participants perceived their hrqol as having improved considerably, as measured by the eq-5d-3l index score. the inadequate increase in exercise dosage could be the reason that no impact was noted (sattelmair et al. 2011) in the distance walked in 6 min. the lack of effect on impairment and health condition needs to be addressed with more frequent sessions over a longer period of time (e.g. 6 months) and a greater dosage (twice a week for a longer period of time) possibly resulting in an improvement in these parameters. at least 150 min of moderate-intensity physical activity or 60 min of vigorous intensity aerobic activity per week (haskell et al. 2007) is necessary to bring about health benefits and fitness for an individual. lastly, improving physical functioning will optimise the quality of life, overall well-being, and may possibly improve overall long-term outcomes (american college of sports medicine 1998; king & king 2010; painter 2008; physical activity guidelines advisory committee 2008; saltin et al. 1968). it has been well established in the literature that exercise can improve emotional health, depression, fatigue and self-efficacy thereby improving chronic disease management (beniamini et al. 1997; dilorenzo et al. 1999; mcauley & david 1995; ewart et al. 1986; rejeski et al. 1998; singh, clements & fiatarone 1997). in addition, moving forward an inter-professional intervention may be utlised, where the dietary sessions are managed by a dietician and the self-management skills by a psychologist. it would also be valuable to recruit local community health workers as peer trainers, who have a good understanding of the local culture. in both groups, the utility score improved significantly from baseline, but the improvement in the median was 0.2 in the experimental group, compared to 0.1 in the control group. a possible explanation for the improvement in both groups is the testing effect or the demand effect that takes place during research (cohen et al. 2013), and it is highly unlikely that the improvement was because of standard care, as standard care at the clinic does not address the joint pain of the women. the experimental group gained a median of 0.19 points on the index score, which was significantly more than that of the 0.07 in the control group. an improvement of 0.21 point on the index score (utility score × years lived in that state) implies that the effect on the experimental group of the intervention lasted for one year. to put this differential qaly gain into perspective, the national institutes of health care and excellence of the uk (nice), which uses the eq-5d-3l index to calculate the cost-utility of different interventions, suggests that £20 000–£30 000 is a reasonable amount to pay per qaly (dillon 2015; mccabe, claxton & culyer 2008). the gain of the experimental group would justify the expenditure of approximately £2500 or r50 000 at current exchange rates. although the threshold cost of a qaly gain in a high-income country, such as the uk, would be far higher than in south africa, the gain in hrqol in the experimental group is clearly considerable. further, cost-utility analysis is recommended to determine what the actual cost of the intervention offered was, but this was beyond the scope of this study. as in previous studies, the eq-5d-3l and the ses performed well with regard to the domain scores. in contrast, the eq-5d vas did not demonstrate greater improvement in either group from baseline to 6 weeks, which was unexpected. the median scores were low, 50–60, even when compared to those of similar groups in south africa. the mean eq-5d-3l score was 60.4 for individuals living with hiv, in the high-density suburb of khayelitsha, in cape town (hughes et al. 2004); 61.7 in a resource-poor community in the western cape, before haart treatment (jelsma et al. 2005); 66.1 in isixhosa-speaking individuals with disabilities in a rural community and 60.3 in an urban community (jelsma et al. 2007). the lower scores in this study could be attributed to different cultures, and differences in the age groups of study participants as well as the inclusion of male participants in one of the previous studies quoted (jelsma et al. 2007). however, the validity of the vas in this population may be questionable. forty-two per cent of the respondents scored 50 on the scale, which may indicate a lack of understanding of what the scale represents. in addition, concurrent validity was poor as there was no correlation between the eq-5d-3l index and the vas scores. the validity of the isixhosa version of the vas of the eq-5d-3l was established in an urban, under-resourced area (jelsma et al. 2004; maart, jelsma & amosun 2015), in cape town. the poor performance of the eq-5d-3l vas suggests there might be a discrepancy between the numeracy levels of populations for which the questionnaire was validated and the population of this study. poor numeracy and literacy skills are of grave concern in south africa (modisaotsile 2012; spaull 2013), particularly in rural areas, and it would seem that, despite the inclusion criterion of literacy, the participants did not have an adequate level of numeracy to respond appropriately. additionally, the concepts used in the questionnaires might have been foreign to a population that is naive to research, especially with regard to evaluative questions regarding their health and physical activity levels. the ses performed better than the eq-5d-3l and vas, but there were some aspects that require caution. the internal consistency was high and there was a trend towards correlation with the eq-5d-3l index score. however, there was some clustering around mid-scores (5 for individual scores and 30 for the total) and full scores (6 for individual and 60 for the total). a possible explanation for this result is that the participants were insufficiently numerate to respond appropriately. despite a lack of economic resources, high compliance with attendance (88%) indicates that the intervention was well received and appropriate for this group of women. the feedback received regarding the sessions was consistently positive. the acceptability questionnaire revealed that the participants had all enjoyed the intervention, and apart from including more dancing and games, they would not change the programme and would like it to continue. however, the timing of the intervention (e.g. on weekdays and during the day) may be a factor that could be altered in the future. if classes were offered outside of working hours, it would then allow more participants to attend. limitations the intervention was based on information gained from several sources and was modified after input from participants in a pilot study. however, more active input from eligible participants in the programme at the planning stage would have been particularly useful, and this is acknowledged as a weakness of the development process. more engagement with the community might have led to further enrichment of the process, and unfortunately, the researcher had no public involvement in the development of the intervention other than the involvement of the 10 women who provided input into the piloting of the programme. the participants who met the inclusion criteria of the study provided input, which resulted in modification of the programme. the pilot study and subsequent changes made ensured the unique local perspective of certain activities in the intervention. more engagement with the community might have led to further enrichment of the process. however, the intervention was piloted on participants who would have met the inclusion criteria of the study and their comments were solicited and resulted in modification of the programme. the pilot study and subsequent changes made did ensure that the unique local perspective towards certain activities in the intervention informed the intervention. it is acknowledged that there may be room for bias as the first author was involved in allocation to groups (allocation concealment was not performed), in supervising the intervention and in data analysis. however, the allocation by the excel program was rigorously applied, measurements were taken by blinded assistants and the joint analysis ensured objectivity in statistical analysis. a fundamental limitation of the study was the small sample size, which may have resulted in a type ii error. the small sample size and non-parametric nature of some of the outcome variables meant that between-group differences were not examined through the use of additional tests such as repeated measures anova to test for time and group interactions. in future studies, it is recommended that the samples would be large enough to support this additional analysis, which requires greater numbers to detect significant differences. the small sample size was because of both a lower than expected recruitment rate and attrition in the control group particularly. this was a pragmatic study and the relatively low uptake is of concern. because of financial constraints and other demands on time, it is known that individuals from low-income groups are more difficult to recruit successfully for interventions (anderson 2007; marcus et al. 2006; shah et al. 2009). although the sample was similar in most respects to the population, there was bias in recruitment towards unemployed, older women, and it was clear that younger women in employment were unable to make the time available to attend. a further limitation, despite the inclusion criterion of literacy, was that the participants did not appear to have an adequate level of numeracy to respond appropriately to the questionnaires included in the study. however, even if the intervention demonstrated efficacy under more controlled conditions, this pragmatic trial indicates that the effectiveness may be compromised by poor uptake. this will need to be addressed, not only in future studies but also in service provision. it is acknowledged that there are other methodologies, such as participatory action research, which might yield rich data, and in future studies, it might be useful to use these. however, the rct is acknowledged as the gold standard for proving the efficacy of interventions (spieth et al. 2016). it was hoped that the evidence generated by this study would result in the introduction of similar programmes by the health authorities in other phcs. implications for physiotherapy practice the positive response to the programme and high compliance with attendance in those who participated as well as the positive way in which the programme was received both indicate that there is a place for group-based interventions incorporating physical activity and health education within the phc setting within these communities. in addition, the increase in qalys suggests that the programme may well be cost-effective. the low recruitment rate, which favoured unemployed, older women, might require that the timing of the intervention be examined and late afternoon or weekend classes could perhaps have a greater uptake. physiotherapists and possibly other health care professionals should actively participate in the development of appropriate methods of intervening at community level through the medium of phc clinics. by doing so, they can reduce the negative impact on the functioning and quality of life of those individuals with msc. the research study was self-funded and unfortunately not able to continue once the programme was ended. however, information has been used to plan placements for physiotherapy students and has been shared with health authorities, who have been encouraged to make posts available to provide the care for this neglected population. conclusion this was a pragmatic study, which ultimately included a smaller sample size than planned. in addition, there were concerns about the validity of the outcome measure, which relied on numerical literacy. however, the intervention appears to have promise, and further investigation is warranted. it may thus be useful to regard this as a pilot study for a larger, multi-centre intervention. it is important that health care professionals as well as policymakers should explore and improve interventions, to empower groups of disadvantaged people who are often neglected by the health system. these interventions should attempt to change the individuals’ health behaviours and reduce existing health inequalities. establishing a quality phc physiotherapy service will ensure a comprehensive response to a growing health care burden, especially in resource-poor settings and in the long term may have a potential economic impact on health care in south africa. there is a definite shift in responsibilities of the day-to-day management of chronic diseases away from the health care professional to the individual living with the chronic disease. self-management may be the mechanism to bridge the gap between the patient’s needs and the capacity of the present health system services to meet the needs of individuals living with chronic diseases. acknowledgements the authors would like to thank the national research foundation for funding the project; homemed (pty) ltd – pretoria for supplying the blood pressure monitors, blood glucose monitors, glucose testing sticks as well as medlance needles; er 24 in bloemfontein for providing a trained paramedic on site during the 6 weeks of the intervention programme; and the department of dietetics and human nutrition at the university of the free state for compiling the healthy eating section in the workbook. competing interests the authors declare that they have no financial or personal relationships that might have inappropriately influenced them writing this article. authors’ contributions r.y.b. performed the study and preparation of the first draft of the manuscript. j.j. did the statistical analysis and, with r.p., edited the manuscript. all authors read and approved the final manuscript. funding the national research foundation funded the project. the funding body played no role on the study design, the writing of the manuscript or the decision to submit the manuscript for publication. references alford, l., 2006, ‘on differences between explanatory and pragmatic clinical trials’, new zealand journal of physiotherapy 35, 12–16. american college of rheumatology, 2000, ‘american college of rheumatology 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https://euroqol.org/wp-content/uploads/2016/09/eq-5d-5l_userguide_2015.pdf wideman, t.h. & sullivan, m.j.l., 2011, ‘differential predictors of the long-term levels of pain intensity, work disability, healthcare use, and medication use in a sample of workers’ compensation claimants’, pain 152, 376–383. https://doi.org/10.1016/j.pain.2010.10.044 woby, s.r., raoch, n.k., urmston, m. & watson, p.j., 2007, ‘the relation between cognitive factors and levels of pain and disability in chronic low back pain patients presenting for physiotherapy’, european journal of pain 11(8), 869–877. https://doi.org/10.1016/j.pain.2010.10.044 world health organization, 2015, obesity and overweight, fact sheet 311, viewed 23 february 2015, from http://www.who.int/mediacentre/factsheets/fs311/en/ abstract introduction aims and objectives study design results discussion of key findings strengths and limitations recommendations conclusion acknowledgements references about the author(s) taegan devar people smart consulting, durban, south africa shaida bobat school of applied human sciences, discipline of psychology, university of kwazulu-natal, durban, south africa shanya reuben school of applied human sciences, discipline of psychology, university of kwazulu-natal, durban, south africa citation devar, t., bobat, s. & reuben, s., 2020, ‘representation and methods of normalisation: narratives of disability within a south african tertiary institution’, african journal of disability 9(0), a629. https://doi.org/10.4102/ajod.v9i0.629 original research representation and methods of normalisation: narratives of disability within a south african tertiary institution taegan devar, shaida bobat, shanya reuben received: 08 apr. 2019; accepted: 22 may 2020; published: 23 july 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the manner in which disability is understood influences how individuals within a society, its institutions, policies and structures are able to accommodate and support people with disabilities (pwd) (kaplan 2000). understanding how students with disabilities (swd) within a higher education context perceive and experience disability as well as how key players, namely, lecturers and disability unit (du) staff, who influence that experience, is important in further shaping policy and providing a truly inclusive environment for all within heis. objectives: the study aimed to examine the narratives of disability among swd, lecturers and the du within a tertiary institution, with a view to better understand their experiences and required initiatives to address the challenges of disability within a higher tertiary institution. method: the study drew on three theoretical frameworks: social constructionism, feminist disability theory and the foucauldian perspective. data for the study were collected through in-depth semi-structured interviews with 12 swd, seven members of staff from the institution’s du and five lecturers from within the school of applied human sciences. data were analysed using thematic analysis. results: the findings suggested that in spite of both facilitating and positive representations of disability, the dominant representation of disability was perceived as challenging and as a result, disempowering. students with disabilities were found to adapt, and consequently modify their behaviour by disassociating from their disability in order to fit in. conclusion: the study highlights the need for creating spaces and engagement within an hei context that both challenge negative discourses of disability, and at the same time, promote positive representations of disability. keywords: swd; normalisation; narratives; social constructionism; higher education institutions. introduction social and scientific value for most students, studying at the tertiary level is an empowering experience; however, for many students with disabilities (swd), this empowering experience of higher education is often difficult to achieve (fuller, bradley & healy 2010). in 2011, an estimated 7.5% of south africans reportedly were living with a disability that prevented them from full participation in life activities (including equal access to higher education). although no research has been conducted on the prevalence of swd within higher education institutions (heis) in south africa, it is estimated that in 2011, swd made up less than 1% of the student population of many heis in the country (statistics south africa 2014). this is alarming, especially given the provisions of the south african education system to support swd that are founded on a human rights framework and promotes inclusivity (matshedisho 2007). mutanga (2017) argued that a contributing factor to the low participation in south african heis is the limited support provided by institutions, as disability matters are not prioritised (ohajunwa et al. 2014; tugli et al. 2013). furthermore, commitment and support at the government level is a challenge (matshedisho 2007; matunga 2017). consequently, access to heis does not guarantee that swd will be able to access education and be successful when they enter heis (mutanga 2017). barriers as a consequence of south africa’s apartheid era have influenced the manner in which heis are structured and function, as well the dominant beliefs and attitudes that inform practices within heis (howell 2006, matunga 2017). these barriers are problematic, because postsecondary experiences are vital in shaping students’ beliefs, identity and self-concept (hutcheon & wolbring 2012; kraus 2008), and also because they impact on students’ health and access to future opportunities (jung 2001). furthermore, the experience of tertiary education provides a means for people with disabilities (pwd) to participate in knowledge production and policy development that describes their own perspectives (jung 2001). according to the foundations of tertiary institutions of the northern metropolis (fotim) report on disability in higher education (healey, pretorius & bell 2011), there is no single definition of disability that exists within the south african tertiary sector (healey et al. 2011). rather, different heis have their own way of classifying disability and swds (healey et al. 2011). the model adopted by heis has a significant impact on the kinds of services provided and the manner in which they are provided (2011). the definitions utilised by heis suggest that a conceptualisation of disability within a medical model framework is still predominant; however, there is a shift towards an acknowledgement of external factors in ensuring inclusivity (healey et al. 2011; mutanga 2017). foundations of tertiary institutions of the northern metropolis’s study further highlighted this, explaining that there is still a predominant focus on impairment and an individual having to fit into and adjust to the environment (dms 2011). it is argued that a common definition of disability needs to be formed for south african heis that express the fluid nature of disability as a concept as well as acknowledging the functional impairment and barrier elements against which an individual can be assessed (healey et al. 2011). the world report on disability (world health organization [who] 2011) provided a balanced approach to disability and acknowledged different aspects of disability (who 2011). the international classification of functioning, disability and health (icf) understands disability and functioning as a dynamic interaction between contextual factors and health conditions known as the bio-psycho-social model of disability (who 2011). disability within this framework is understood as a broad term for ‘impairments, activity limitations and participation restrictions’ (who 2011:7), referring to the negative influences of interaction between the individuals who have a particular health condition and personal and contextual factors (who 2011). wheeler (2011) described how a conceptualisation of disability that takes into account the complex interaction between the individual and society and accounts for the complex variability in social, perceptual and behavioural characteristics that occur in pwd creates an understanding of disability not as a deficit but rather as a perceptual difference. shakespeare (2014) emphasised the importance of this point, explaining that there are several reasons as to why biological and social factors are interdependent. impairment is a necessary condition in understanding the challenges facing those with disability (shakespeare 2014). consequently, it has to be acknowledged as part of the definition of disability. secondly, much impairment is often caused by social conditions (shakespeare 2014). furthermore, these impairments are often exacerbated by social conditions or processes (shakespeare 2014). therefore, a definition of disability that takes into account the dynamic relationship between these factors such as the who’s bio-psycho-social framework of disability enables a greater understanding of people with disabilities’ experiences and the manner in which they navigate their social context. disability studies in the context of higher education are readily available ranging from academic performance, unequal opportunity, support services, identity and, among other things, barrier and enabler factors (mosia & phasha 2017; mutanga 2017, 2018). it is argued that a common definition of disability needs to be formed for south african heis that expresses the fluid nature of disability as a concept as well as acknowledging the functional, impairment and barrier elements against which an individual can be assessed (healey et al. 2011; mutanga 2017). historically, pwd in south africa have been discriminated against, marginalised and have been prevented from exercising fundamental political, economic, social, cultural and development rights (south african human rights committee 2002). this was a result of the predominant view of pwd within a medical framework, which viewed pwd as sick and in need of care rather than as equal citizens with responsibilities and rights (howell, chalklen & alberts 2006). inequalities in the schooling system exacerbated the challenge, as learners were separated based on both racial lines as well as on the basis of who were ‘normal’ and who had ‘special needs’. in response, two schooling systems emerged: (1) a dominant mainstream system for ‘normal’ learners and (2) a special education system for those with special needs. this secondary system had a limited number of resources and classes within mainstream schools, especially for black learners with disabilities, resulting in high levels of exclusion from the education system (howell 2006; swart & pettipher 2011). this had a direct knock-on effect on the number of swd who had access to higher education. in spite of the enabling legislation, policies and guidelines to support pwd in heis, the management of disability continues to be fragmented, and the commitment of heis towards pwd, including the allocation of resources in supporting pwd, continues to be varied (strategic policy framework on disability for the post-school education and training system 2018). this includes the manner in which heis are structured, how they function, the dominant attitudes that influence practices and the role that higher education plays in society (healey et al. 2011; strategic policy framework on disability for the post-school education and training system 2018). students with disabilities face resource constraints, minimal student or teacher interaction and poor awareness of disability issues within the tertiary community (healey et al. 2011; mosia & phasha 2017; naidoo 2010). in addition, swd are often placed in specific fields of study (healey et al. 2011), subjected to the continued use or perspective of the medical model (riddel 1998) and lack flexibility regarding curricula, inclusive learning and teaching methodologies (healey et al. 2011; mosia & phasha 2017; naidoo 2010). initiatives and structures to support swds in south african heis differ significantly across institutions in relation to the work that is carried out and the services that are offered (healey et al. 2011; shevlin et al. 2004; strategic policy framework on disability for the post-school education and training system 2018). disability units (dus) within heis are often the first access point for students to receive support (naidoo 2010). services include awareness raising, policy development, the provision of assistive devices and equipment, assisting where access issues arise, auditing physical accessibility, provision of a dedicated computer room, providing personal and academic support, providing specialist services (such as a sign language interpreter), providing assistance with governmental bursary and grant applications, dedicating extra time for tests and exams, and providing support such as negotiating when conflicts arise (healey et al. 2011; matshedisho 2010; naidoo 2010; pillay et al. 2013). furthermore, the willingness and attitudes of academic staff toward providing support to swd influence the progress of these students in heis (fuller et al. 2004; mutanga 2017). mutanga (2017) highlighted how academic staff often have different understandings and experiences of disability. this varies across faculties and staff members, and one of the many reasons for this is the absence of embedded hei disability policy and practices (mutanga 2017). furthermore, support for swd is reliant on dus and individual academic staff members highlighting the need to understand the attitudes and views of academic staff with regard to swd (mutanga 2017). there is a need for research that focusses on the lived experience of disability and those living with disability (hurst 1996; matunga 2017), and as wheeler (2011:849) appropriately describes it: ‘the best person to say what support they need to access society is the individual who is experiencing it’. therefore, understanding how swd within a higher education context perceive and experience disability as well as how key players who influence that experience, namely, lecturers and the institutions’ disability support unit, perceive and experience disability is important in providing a truly inclusive environment for all within a tertiary institution. furthermore, there are few studies that are contextualised within the unique south african context in spite of the implications that this type of research bears for practice-level planning and policy-making in the area of disability. conceptual frameworks the study draws from three theoretical frameworks, namely, social constructionism, feminist disability theory and a foucauldian perspective in order to understand how swd, lecturers and the du staff navigate disability within a tertiary context. within a social constructionist framework, disability is understood as an outcome of specific cultural conditions (priestley et al. 2010; siebers, 2001). through language, understandings of disability are constantly being constructed and perpetuated in society (burr 1995; durrheim 1997). an individual’s sense of self is perpetuated through stories that are narrated about the self and reality. people with disability structure their narratives in relation to dominant cultural narratives that shape and become the context of their lived experience (andrew 2004). dominant narratives about disability provide the opportunity of identifying what is understood as the normative experience in a particular context (andrew 2004). when people’s experiences do not fit in with the dominant and the familiar, individuals question the foundations of these storylines and challenge them (andrew 2004). consequently, counter narratives are constructed and although they may understand their narratives as marginalised voices, they do not see them as unique (andrew 2004). therefore, marginal groups in society, such as the people with disabilities, are able to have their voices heard, highlighting perspectives and understandings that have been devalued, suppressed and abnormalised] (delgado 1995). furthermore, personal stories around disability provide individuals with a chance to take on conceptions and ways of being that may be more facilitating (andrew 2004) and may be more in line with their personal understandings. highlighting this process allows individuals to be aware of and appreciate the agency they possess in influencing preferred ways of being (white 1991). feminist disability theory understands disability as a ubiquitous cultural system that classifies certain kinds of bodily differentiations. like femaleness, disability is a culturally created narrative of the body (garland-thomson 2002). as with systems of gender and race, the ability or disability systems produce individuals through the marking and differentiating of bodies. this ideological comparison influences the formation of culture and legitimises the unequal distribution of power, status and resources within a biased social context (garland-thomson 2002). people with disabilities, as with women’s bodies, are subjected to what foucault (1979) described as ‘discipline’, where systems of race, sexuality, ethnicity, gender, ability and class all place great amounts of social pressure to normalise, regulate and shape the subjects’ bodies. there is a strong push towards fixing and regulating differentiated bodies, often at the expense of producing a more accessible social context, or improving the provision of support to people with disabilities (garland-thomson 2002). power, according to foucault (2000, as cited in reeves 2002), is brought about in the body and is created in every human relationship; it does not reside with one individual but permeates throughout. power and knowledge are intrinsically linked and one cannot exist without the other. knowledge is what allows individuals to become subjects, as individuals use different bodies of knowledge as points of reference in understanding themselves and others. disciplinary power categorises individuals, and subjects them to continuous forms of surveillance. this involves the creation of rules that allows for the monitoring of the body to ensure that it is useful (reeves 2002). reeves (2002) cited the following example: bodies of people of disabilities are under constant surveillance by medical practitioners who attempt to identify any form of defect to categorise that individual as a patient (the body has become an object of power or knowledge). improvements in medical technology have allowed greater efficiency in the manner in which individuals classify and document the body. the visibility of an impairment allows any observer access to privileged information and thus power about their body. this power is influenced by assumptions and prejudices around disability and can prevent an individual from participating in society. consequently, those that are subjected to the constant power of the gaze develop an awareness of their impairment and begin to engage in self-policing in an attempt to appear acceptable and ‘normal’. these tensions (multiple experiences [white 2001]), which are experienced by people with disability, provide moments of possibility in which to examine, re-create and expand their personal and relational identity (foucault 1979). the ontological and epistemological underpinnings of the above frameworks provide a structure in which to engage with the lived experiences of swd. aims and objectives in this study, we aimed to explore the narratives around disability within an hei. the study made specific inquiry into the experiences of swd and key players who influence this experience, namely, lecturers and the institutions’ du staff members. this bears significance for practice-level planning and policy-making in the area of disability. study design a qualitative research design was used as the researchers aimed to explore the personal, in-depth meanings and understandings of disability as well as the contextual factors that shape those meanings. the common-sense understandings of reality are important in qualitative research, as these contain the meanings that individuals use when they interact with others (neuman 2006). it is idiographic and inductive in nature. setting the study was conducted with 12 swd, five lecturers who teach swd and seven du staff members at the university. participants who voluntarily agreed to participate in the study made arrangements with the researchers to meet for an interview at an agreed time on the institution’s premises. interviews were approximately 1 h in duration and took place over a period of 2 weeks after the july mid-semester break in 2014. study population and sampling strategy data were collected from three sources: swd, lecturers who teach swd and du staff. as the research required a very specific sample of the tertiary population, purposive sampling was used. the researchers ensured that the sample selected included characteristics of the population with regard to race, gender and culture. biographical questionnaires and semi-structured interviews were used in the collection of data. twenty-four participants were interviewed: twelve swd between the ages of 19 and 56 of which seven were male and five were female. seven members of staff from the institutions’ du were interviewed. their ages ranged between 25 and 42, of which four were male and three were female. five lecturers from within the school of applied human sciences were interviewed, of which three were male and two were female. data collection once permission and ethical approval to conduct the study was granted, individuals who met the sample criteria were invited to participate. this was carried out through posting of notices around the institution about the study as well as approaching students, staff and lecturers on the campus. those who voluntarily agreed to partake in the study made arrangements with the researcher to meet up for an interview on the institutions’ premises. participants signed an informed consent form, outlining what the study involved. all participants were briefed about the study, their roles, matters of confidentiality and that their participation was entirely voluntary. with the permission of the participants in the study, interviews were audio-recorded. only three participants declined audio recording and in those instances, the researcher requested permission to take down notes that were then transcribed immediately to maintain accuracy. data analysis the researchers transcribed the recordings of each interview verbatim, analysing the data using thematic analysis, as suggested by braun and clark (2006). the research analysis was located within a social constructionist epistemology (identifying patterns and themes as socially constructed), to facilitate an understanding of how the participants make sense of their disability, and how these are influenced by different socio-cultural contexts and conditions. the researchers used an inductive approach to thematic analysis. ethical consideration the researchers requested permission to conduct the study from the higher degrees committee of the faculty of humanities, development and social sciences at the university of kwazulu-natal (ukzn) as well as sought ethical approval from the human social science ethics committee of ukzn (reference number: hss/1349/013m). furthermore, the researchers requested permission to conduct the study from the du at ukzn. once permission was granted, the researchers invited participants who met the sample criteria. individuals who voluntarily agreed to partake in the study were asked to sign an informed consent form, outlining what the study involved. the researchers ensured that all information obtained during the study remained confidential and was only seen by the researchers, and that it would be kept in the discipline of psychology for a period of 5 years. the identity of all participants in the study was protected and under no circumstances was any identifying information mentioned. participants were constantly reminded throughout the study that their participation was entirely voluntary, that they could withdraw from the study at any time and they would not experience any negative consequences for doing so. in collecting the data, the researchers ensured that if at any stage, the participants experienced any negative consequences from the interview process, they would refer them to a registered psychologist to be debriefed and if required to receive counselling. furthermore, the findings of the study were made available to the du for the support unit to draw on the learnings to inform the support they provide to swds. results the findings suggest that in spite of the facilitating and positive representations of disability present in the institution, the dominant representation of disability was perceived as challenging, and as a result, disempowering. students with disabilities were found to adapt, and consequently, modify their behaviour by disassociating from their disability in order to fit in. there is a strong emphasis on students having to adapt in a tertiary context. through normalisation mechanisms of the ‘gaze’, through the engagement with people without disabilities and through the language used when speaking about swd, these understandings are perpetuated and internalised. as a main finding, ambivalence between needing to associate with being disabled and simultaneously disassociating with being disabled emerged from the data. in understanding the results, the researchers grouped the findings into three sub-themes: representations of disability methods of normalising disability the management of disability. discussion of key findings representations of disability a clear disempowering representation of disability emerged from the data, one where varied embodiment or being different was seen as inferior. there was an ‘us and them’ tension that was present predominantly between swds and students without disabilities. this tension was also present in the interface and interaction between service providers (du staff and lecturers) and swd: ‘… [w]ith disability yeah, knowing the fact that there are some sort of stuff that you cannot do because you are one and two, somehow it automatically side-lines you, you know, there are some things that i for one as a student with disability i cannot do whereas another student can do ….’ (participant 13, 23 years old, male) ‘… i feel that there is a certain type of stigma around people with disabilities at the university, other people try to be helpful, you, when a person is with a disability we have the right to skip queues and stuff and you can feel that there is tension and people feel like this is unfair because we’ve been standing here for hours and stuff like that.’ (participant 14, 21 years old, female) in the above excerpts, swd 1 views himself as different, and therefore, he feels different and excluded. student with disabilities 2 describes a tension that is present between swds and students without disabilities when swd get preferences. it appears as if swds experience resentment from the students without disabilities when they utilise processes or facilities that assist them. a feminist disability framework highlights that people’s understandings of disability are formed through marking those who appear different (swd) in comparison to the culturally accepted norm (the students without disabilities). the above excerpts both illustrate this process of marking, through making swd feel different, their inability to do certain things that consequently make them feel excluded are highlighted as seen with swd 1 and through the tensions that are created between students with or without disabilities as experienced by swd 2. many swd in the study described how the students without disabilities are sympathetic towards them, and it is interpreted as if they are people who are less or are incapable of achieving things in the same manner as the students without disabilities; the following excerpts highlight these feelings: ‘uh i think students generally pity students with disabilities like it’s a oh shame type of attitude and i think that needs to change yeah and they need to understand that there might be something physically wrong with us but we have the same mental capacity as them.’ (participant 14, 21 years old, female) ‘students also have this sympathy, they feel sorry for swd, people need to understand that we are disabled but it’s not like we can’t do things.’ (participant 23, 22 years old, male) individuals are able to exercise power by drawing from discourse. these understandings allow peoples’ behaviours to be represented in a particular way and highlight what is acceptable and unacceptable within a specific context (burr 2003). student with disabilities 2’s understanding of his disability as something ‘wrong’ indicates this view that his embodiment is less, it does not fit into what is considered as acceptable. thus, when individuals represent or define something in a certain way, they are creating a form of knowledge that brings a form of power (burr 2003). both swd in the above excerpts highlight feelings of frustration and agency when describing how they are just as capable as the students without disabilities and feel that they are not treated as such. a feminist disability framework would illustrate that the use of these categories in understanding and describing swd can place them at a disadvantage through devaluing their bodies because they are non-conforming to culturally held standards in the institutional context (garland-thomson 2002). the people with disabilities are not only de-valued for their bodies (hannaford 1985, as cited in wendell 1989), but they are also reminders to the able-bodied of what they are trying to avoid, ignore or forget (lessing, j., 1981, denial and disability. off our backs 11(5):21.). disability systems work to validate and sustain certain privileged categories such as normal, fit and competent, which all create cultural power to those who claim to have that particular status and who live in these positions (garland-thomson 2002). the following interview where a male swd describes an incident with a female friend of his without disability illustrates how this is played out: ‘i had a friend i was really close to who was female and i think that i don’t know we had like a weird relationship because we weren’t dating but at the same time we liked each other so we were always acting as if we were dating. but we always say, like no, my friends and what not and we call each other husband and wife. so one day, she came towards me, she was sitting with her friends and one of them was a guy, and she came towards me and she was like hugging and like, oh, this is my husband and what not – and the guy looked at the girl and said oh are they really dating? and the friend knew we weren’t really dating, but she was like – yeah they dating why? and he was like, oh does he have lots of money or something? so there was that idea that disabled people, disabled guys would only get girls, if they have cash and that attitude.’ (participant 22, 22 years old, male) as the above excerpt illustrates, for the student without disability, the idea of a swd being able to have a relationship with a student without disability did not fit into his categories of ‘normal’. the male swd was understood as less, not being fit to date an able-bodied female. therefore, there had to be an alternative reason for the existence of their relationship such as the swd having wealth. furthermore, this dynamic plays out between swd 10 and his female friend without disability as well, he describes: ‘[w]e had like a weird relationship because we weren’t dating, but at the same time, we liked each other, so we were always acting as if we dating, but we always say like no my friends, and what not.’ (participant 22, 22 years old, male) the idea of having a relationship was not considered the cultural norm and was therefore regulated within a public space. within a feminist disability framework, understandings such as these control differentiation and highlight hiddennorms of which bodies of people with disability arenot part of (garland-thomson 2002). furthermore, these understandings perpetuate the characterisation of the people with disabilities as inadequate, redundant or restrained (garland-thomson 2002). students with disabilities are thus marked through systems such as these, and attempts are geared towards normalising or eliminating the differentiation through a number of cross-cultural actions (garland-thomson 2002). however, there are alternative representations and discourses of disability present within the tertiary institution that challenge the view that swd are less capable than the students without disabilities. this can be seen in the following excerpts: ‘… [s]o do not look at me and say oh you have big eyes, how does your body look, i do not see anything physical about you, do not do that, do not dictate as to what my disability could be and what it is, just treat me as a student.’ (participant 16, 21 years old, female) ‘they might have certain difficulties you know, they might have certain impairments, they might not be able to do certain things, they might not be able to walk with two legs like most people, they might have a skin condition or whatever it is you know, they might be different, but a lot of those people besides the fact that they sometimes can’t do certain things, they are unable to do certain things, they are human beings like everybody else.’ (participant 6, 31 years old, male) a feminist disability framework would understand the above excerpts as more facilitating representations of disability, and these counter-narratives allow for ‘resymbolisation’ where opportunities are created to shape and retell culturally held beliefs about swd and by doing so, influence their experience (garland-thomson 2002). this can further minimise the identification of swd in terms of discriminatory and oppressive attitudes towards people with disabilities (garland-thomson 2002). a social constructionist view understands that personal narratives allow people to take on conceptions and ways of being that may be more facilitating (garland-thomson 1998) and may be more in line with their personal understandings. highlighting this process allows individuals to be aware of and appreciate the agency they possess in influencing preferred ways of being (white 1991) as sdw2 describes, ‘just treat me as a student’. thus, the students and staff members above have created more facilitating ways of understanding disability; in spite of swd being different, they are no less than the students without disabilities and should be treated as such. within a foucauldian perspective, power and resistance are seen as mutually related. the power inherent in one discourse is only apparent from the inherent resistance in another (burr 2003). thus, the above excerpts highlight foucault’s notion of ‘discursive resistance’. this involves the emergence of multiple subject positions as alternatives to the dominant discourse (caldwell 2007). foucault understands discursive resistance as a positive productive force, rather than simply a negative counter reaction (caldwell 2007). discursive resistance is effectively a volitional act of refusal (caldwell 2007). this is clearly illustrated in swd 4’s quote; ‘do not dictate as to what my disability could be and what it is’. discursive resistance allows those ‘subjects’ of power (swd) to act otherwise and reject their confinement within predetermined discourses of power or knowledge (caldwell 2007). methods of normalising disability the researchers found that swd are subjected to what foucault (1979, as cited in garland-thomson 2002) described as ‘discipline’, where systems of race, sexuality, ethnicity, gender, ability and class, all place great amounts of social pressure to normalise, regulate and shape subjects’ bodies (garland-thomson 2002). according to foucault (1977, as cited in reeves 2002), disciplinary power categorises individuals and subjects them to continuous forms of surveillance. it involves the creation of rules of normalisation that allows for the monitoring of the body to ensure that it is useful (reeves 2002). for example, many swd talk about how they are looked at as abnormal: ‘… [i]t’s all about you know what i’m saying about perception, they view you in a certain way if you’re a disabled person they look at you differently you not supposed to be that, so that’s how people view us disabled students i think.’ (participant 21, 21 years old, male) ‘so when you are disabled you i still have to start like, what kinds of people are meeting there, like so it’s a new environment, new people and we have to always, we always like stared at, people like some, the first time they see you, they stare, so all those experiences we live with them every day but you get used to it.’ (participant 18, 21 years old, female) the swd in the above excerpts were subject to what foucault (1980) described as the power of the gaze, which occurs in their everyday social interactions (reeves 2002). the visibility of an impairment of an swd allows any observer access to privileged information and thus power over their body. this power of the gaze is influenced by assumptions and prejudices around disability and can exclude the people with disabilities from participating fully in society (reeves 2002): ‘[s]ocially yeah well it’s very hard to make friends and communicate because i felt intimidated by, say they might judge, be judgemental, i’ll be judged because of my disability, so it’s hard for me to make any friends or you know, interact.’ (participant 21, 21 years old, male) swd 9 describes how difficult it is to socialise because of the fear of being judged as can be seen above: ‘i felt intimidated by say they might judge, be judgemental’. further, an swd who has a hidden impairment (such as a mental disability) is subjected less to the power of the gaze, but constantly fears being ‘discovered’ (thomas 1999, as cited in reeves 2002). these individuals might, however, still be subject to the gaze from others when utilising facilities for the people with disabilities (reeves 2002). for example, a student with a psychological illness in the current study describes how her disability was ‘discovered’ and how others obtained access to privileged information about her body: ‘i decided to use my skip queue letter because the line now i can pass people then whenever i stand in the queue or whatever i do not feel like talking to people i do not feel like seeing people i don’t like being around people so i found myself being with people, and i was in a bad space so i decided to take out the skip queue letter for myself and i went and stood in the line towards the side to the third table, i went there and i showed the lady in front that i had this letter and then i stood. the person finished from the desk and then i proceeded forward; i don’t even remember what she said, but hurt me in such a way that i just broke down there and now it was seen and everything and yeah’. (participant 21, 21 years old, male) a further method of normalising is through the language that is used when speaking about swd. a social constructionist framework understands that it is through language that understandings of disability are constantly being constructed and perpetuated in the society (burr 1995; durrheim 1997). through the language people use in their everyday interactions with one another, they actively produce forms of knowledge around disability (burr 2003). students with disabilities are spoken about by lecturers and du staff in the current study in normalising ways, they are spoken about in terms of how they have ‘improved’, how ‘normal’ they are or how they ‘adjust’; the following excerpts illustrate this: ‘it’s like they adjust to their disability and they actually they do well even what’s this disability called, i forgot, but you know their speech actually even improves because i guess they interact with so many people when they here, that they actually, you know they improve, so i think that’s been a, that’s been a success for me to actually see people grow in that way.’ (participant 10, 26 years old, female) ‘… [q]uite a lot of them don’t even, you know, being disabled is not even you know, they don’t even, i don’t know whether they actually think about it – i can’t obviously speak for them but it just doesn’t affect them when you talk to them and how they carry on with their lives or maybe that, you know, but they come out as people who are not disabled.’ (participant 6, 31 years old, male) ‘… [t]hey really, they do not let their disability get the better of them.’ (participant 2, 26 years old, female) ‘[t]o see the students are going about, the disabled students are going about with their student lives on their wheelchairs, electronically, walking around with the walking stick, so there is that sense of normality which i think sort of for me is a positive thing.’ (participant 5, 48 years old, male) as these excerpts illustrate, language thus has a normalising function. the manner in which disability is spoken about in a tertiary context is one where a greater emphasis is placed on the student having to fit into the environment. this emphasis on students having to ‘fit in’ minimises the tolerance for human difference within a university context, as this emphasised the understanding of disability in bodies as flawed, rather than the need for social systems to be more responsive and in need of review (garland-thomson 2002). foucault describes these normalising methods as ‘dividing practices’ – modes of manipulation that make up a scientific discourse with practices of social exclusion and segregation to classify, distribute and manipulate subjects (tremain 2001). through these practices, swd (subjects) become objectivised, such as healthy or sick, able bodied or disabled (tremain 2001). morris (1991)highlighted that behind these techniques lie prejudices around the value of lives of individuals with disabilities. individuals with disability are often devalued through this form of power and are made to feel a sense of unworthiness and rejection (reeves 2002). as a consequence, swd who are subjected to these ‘dividing practices’ develop an awareness of their impairment and begin to engage in self-policing in an attempt to appear acceptable and ‘normal’ (reeves 2002). the management of disability many swd in the current study described disassociating with being disabled and acting in ways that limit being treated differently so as to fit in; the following excerpts illustrate this: ‘i’m one that doesn’t like wearing my glasses all the time because i think it attracts unnecessary attention, so i have to walk around half blind at times and there are certain things that i would see and there are certain things that i wouldn’t see and there are certain things that i would choose to see and would want to really see and there’re certain things that i’m like, well, i don’t really need to see that. and unfortunately it goes with, to a certain extent it goes with a choice, and um … and for someone, who can see properly, you don’t choose to see things, right? so for me, there are certain things that i would choose to see.’ (participant 16, 21 years, female) ‘… [u]h during registration you don’t hold, you don’t stand in the queue, if you stand in the queue it’s because you like, like i myself, i for one, stand in the queue because i don’t want to be treated differently.’ (participant 13, 23 years, male) ‘[t]he problem about myself is that i don’t, like i don’t, i know that i am disabled, i’m using crutches and so forth, but i try to live my life as how a non-disabled student lives his or her life.’ (participant 15, 22 years old, male) ‘… [p]ersonally i keep away like i’m to myself and i don’t really sit out you know – because of this fear of being judged as the only person with a disability.’ (participant 21, 21 years old, male) within a foucauldian perspective, the above actions are forms of self-surveillance, and all methods of normalisation work together to ensure that swd (subjects) have a self-assessing, self-monitoring and reflexive relation to themselves (hook 2007). students with disabilities start to live as if they are under constant surveillance and become the sole controllers of their regulation (hook 2007). as illustrated above, even though not wearing her glasses will further debilitate swd 4, she would rather not wear them to fit in. the dynamic of students associating with their disability but simultaneously disassociating with their disability to fit in is highlighted as well. students with disabilities thus internalise current understandings of disability within this context and perpetuate it by sustaining the status quo (hook 2007). for example, the swd below describe how they need to take responsibility of managing their disability: ‘[i]t boils down to being disciplined uh, you act professionally even though you maybe you may differ in which other way, some of the other things that people do but you try and like supress your emotions, you compromise, something’s are hard to solve, you have to compromise … it’s the individual that has the power to do what he or she wants to do, it’s not, it’s not a collective thing whereby you can wait for somebody to do something for you, you should do it yourself you, if you have a grievance you should take up the relevant department or generally people who have authority to solve such things.’ (participant 15, 22 years old, male) ‘… [i]t just depends on the individual student as i’ve said whether you make the effort, whether you get yourself out there or you choose to you choose to be very passive and you choose to let people come to you and whatever the case instead of going out there and actually getting these things yourself yeah.’ (participant 16, 21 years old, female) as the excerpts above illustrate, the representation of disability places greater emphasis on the student, having to adapt and fit into the tertiary environment as being internalised and perpetuated. knowledge around what is normal and what is culturally acceptable in terms of the body are the different forms of knowledge and understanding that are used as points of reference in understanding themselves and others, and by doing so they become objects of power or knowledge (foucault 1977, as cited in reeves 2002). as tremain (2001) described, subjects are productive because the outcome of surveillance is to make the individual an object of knowledge that brings about a particular truth about disability. furthermore, subjects are productive because the truth that is taken on improves its utility, making it more compliant, calculable and comprehensible (tremain 2001), as swd 4 describes, ‘it just depends on the individual student, as i’ve said, whether you make the effort’. strengths and limitations the current study used a qualitative research design, purposive sampling methods and involved in-depth interviews with a specific sample of participants within a specific context (lectures, the du staff and swd within an hei). using this approach enabled researchers to conduct an in-depth exploration of this phenomenon by examining how these individuals personally describe and articulate how they make sense of disability and the related issues in this context. the researchers did cross-check understandings during the interview process; however, they did not carry out follow-up interviews that could have provided participants with the opportunity to verify the data analysis and ensure accuracy (given 2008). furthermore, the current study included key stakeholders who had a direct impact on the experience of swds and did not include the voices of the able-bodied students who could have provided a further understanding into the experiences of disability within an hei. recommendations the creation of positive representations of disability was highlighted in the study as important to all participants. this was highlighted even though there was an acknowledgement of the inherent infrastructural and financial constraints. acknowledging this, students without disabilities and key stakeholders within a tertiary context should work on creating positive representations of disability at all levels of the institution, including the manner in which swd are spoken about publicly, through engagement with swd and hei policy. developing and running awareness and education campaigns around disability as well as the role of the du is vitally important in the creation of these positive representations and for challenging dominant representations. these campaigns need not be resource-intensive but should occur regularly and be an inherent part of the du’s mandate to educate the tertiary community on disability issues. it further creates greater visibility of the du and its functions. more importantly, key stakeholders should be a part of this process in enabling the right issues to be addressed. specific education for du staff and lecturers is important as well, as these individuals engage directly with swd. communicating with key stakeholders was highlighted as another concern in the study. when developing new initiatives for the du or for the institution regarding disability, there needs to be a consultative process with swd, the du staff and lecturers. here again, this need not be an expensive process and can be a simple informal conversation on what the needs of swd, the du staff and lecturers are. this is important as these are the stakeholders who are engaging with swd on a daily basis and will probably have the best suggestions on how to address the issues concerning the swd. greater support is required from the institution in providing accessibility to swd, especially with regard to providing basic services. any institution that aims to serve people with disability has to support this goal through the services they provide. doing so sends out a strong message to the entire tertiary community and society at large that swd are valued members of the institution, and it helps to create positive understandings of disability from the very top of the institution to the bottom of the hierarchy. finally, ensuring integration at all levels of the institution is important in challenging dominant narratives of disability. this involves ensuring that swd are consulted or represented on all committees or forums that have an impact on their tertiary experience, such as having a representative on the student representative council, any sporting councils or when improving or constructing new infrastructure within the institution. conclusion the dynamics of swd disassociating with their disability whilst simultaneously needing to identify with it appears to occur within a system of normalisation. although there are more facilitating and positive representations of disability in the institution, the dominant representation of disability within this context is one that is disempowering and understands different embodiment, as less. there is a strong emphasis on students having to adapt in a tertiary context. through normalisation mechanisms of the ‘gaze’, through the engagement with the students without disabilities and through the language used when speaking about swd, these understandings are perpetuated and internalised. consequently, many swd modify their behaviour and act in ways to fit in and disassociate with being disabled. furthermore, many believe that they have to take ownership for their disability and manage it. the study highlights the need for creating spaces and engagement within an hei that celebrates and creates positive representations of disability. doing so will create opportunities to challenge the fundamental make-up of the current disempowering understandings of disability, as well as the possibility of changing these representations. greater illustrations of positive representations can improve the manner in which access is provided to swds and can create understandings of the disabilities of the swd, who have a right to equal access to infrastructure, resources and processes, enabling them to learn on an equal footing as their able-bodied counterparts. acknowledgements the authors would like to thank the disability unit at the university of kwazulu-natal for their assistance. this article is based on a dissertation. competing interests the authors have declared that no competing interests exist. authors’ contributions t.d. is the main author and is responsible for the design and implementation of the project. t.d. also prepared the manuscript. s.b. contributed to contextualising the study, writing the manuscript and supervised the development and findings of this project, and also provided critical feedback and helped shape the manuscript. s.r. extended the literature review and contributed to the writing of the manuscript, and also provided critical feedback and helped shape the 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recreation and dance 2, 356–364. wendell, s., 1996, the rejected body, routledge, new york, ny. wheeler, m., 2011, ‘syndrome or difference: a critical review of medical conceptualisations of asperger’s syndrome’, disability & society 26, 839–851. https://doi.org/10.1080/09687599.2011.618739 white, m., 1991, ‘folk psychology and narrative practice’, dulwich centre journal 2, viewed 15 april 2013, from https://dulwichcentre.com.au/wpcontent/uploads/2020/01/folk_psychology_and_narrative_practice_michael_white.pdf. world health organisation, 2011, world report on disability, viewed 12 april 2013, from http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf. ajod 10_2021_contents.indd http://www.ajod.org open access table of contents original research ‘satan is holding your tongue back’: stuttering as moral failure dane h. isaacs african journal of disability | vol 10 | a773 | 23 april 2021 original research structural validity and internal consistency of picture my participation: a measure for children with disability patrik arvidsson, shakila dada, mats granlund, christine imms, lin jun shi, lin ju kang, ai-wen hwang, karina huus african journal of disability | vol 10 | a763 | 28 may 2021 original research family disability, poverty and parenting stress: analysis of a crosssectional study in kenya xanthe hunt, christina laurenzi, sarah skeen, leslie swartz, phillip sundin, robert e. weiss, mark tomlinson african journal of disability | vol 10 | a744 | 10 june 2021 original research creating inclusive performing arts practices for development of youth with disabilities: a critical ethnographic study marlene le roux, harsha kathard, theresa lorenzo african journal of disability | vol 10 | a753 | 30 june 2021 original research voices of children with intellectual disabilities on participation in daily activities karina huus, refilwe morwane, maria ramaahlo, sadna balton, emelie pettersson, ingalill gimbler berglund, shakila dada african journal of disability | vol 10 | a792 | 05 july 2021 original research ‘the world is not only for hearing people – it’s for all people’: the experiences of women who are deaf or hard of hearing in accessing healthcare services in johannesburg, south africa khetsiwe p. masuku, nomfundo moroe, danielle van der merwe african journal of disability | vol 10 | a800 | 20 july 2021 original research transitioning to a life with disability in rural south africa: a qualitative study m. christinah sadiki, brian watermeyer, nina t. abrahams african journal of disability | vol 10 | a697 | 22 july 2021 original research impact of prostheses on quality of life and functional status of transfemoral amputees in tanzania ericka p. von kaeppler, alexander hetherington, claire a. donnelley, syed h. ali, corin shirley, sravya t. challa, emily lutyens, billy t. haonga, saam morshed, jan andrysek, david w. shearer african journal of disability | vol 10 | a839 | 07 september 2021 92 99 107 115 123 132 140 150 page i of ii table of contents review article barriers and facilitators to participation for children and adolescents with disabilities in lowand middle-income countries – a scoping review karina huus, liezl schlebusch, maria ramaahlo, alecia samuels, ingalill gimbler berglund, shakila dada african journal of disability | vol 10 | a771 | 08 march 2021 review article african families’ and caregivers’ experiences of raising a child with intellectual disability: a narrative synthesis of qualitative studies siyabulela mkabile, kathrine l. garrun, mary shelton, leslie swartz african journal of disability | vol 10 | a827 | 30 april 2021 review article barriers to and facilitators of employment of persons with disabilities in lowand middle-income countries: a scoping review refilwe e. morwane, shakila dada, juan bornman african journal of disability | vol 10 | a833 | 22 june 2021 original research altered cervical posture kinematics imposed by heavy school backpack loading: a literature synopsis (2009–2019) terry j. ellapen, yvonne paul, henriëtte v. hammill, mariëtte swanepoel african journal of disability | vol 10 | a687 | 22 january 2021 original research using selected behaviour modification practices to enhance reinforcement of reading abilities among dyslexic learners in kenya pamela a. ooko, peter j.o. aloka african journal of disability | vol 10 | a707 | 29 january 2021 original research cognitive behaviour therapy-based early intervention and prevention programme for anxiety in south african children with visual impairments lisa visagie, helene loxton, leslie swartz, paul stallard african journal of disability | vol 10 | a796 | 29 january 2021 original research perspectives on access and usage of assistive technology by people with intellectual disabilities in the western cape province of south africa: where to from here? fleur h. boot, callista kahonde, john dinsmore, malcolm maclachlan african journal of disability | vol 10 | a767 | 23 february 2021 original research sexual and reproductive health services utilisation amongst in-school young people with disabilities in ghana akwasi kumi-kyereme african journal of disability | vol 10 | a671 | 01 march 2021 original research malawian mothers’ experiences of raising children living with albinism: a qualitative descriptive study naomi likumbo, tania de villiers, una kyriacos african journal of disability | vol 10 | a693 | 20 april 2021 1 11 21 33 43 53 61 72 81 vol 10 (2021) issn: 2223-9170 (print) | issn: 2226-7220 (online)african journal of disability http://www.ajod.org open access table of contents original research education of students with intellectual disabilities at technical vocational education and training institutions in botswana: inclusion or exclusion? macdelyn mosalagae, tanya l. bekker african journal of disability | vol 10 | a790 | 22 october 2021 original research family functioning and stroke: family members’ perspectives sibulelo gawulayo, charlene j. erasmus, anthea j. rhoda african journal of disability | vol 10 | a801 | 25 october 2021 original research the black hole of dealing with a disability diagnosis: views of south african rural parents vuyelwa v. duma, ntombekhaya tshabalala, gubela mji african journal of disability | vol 10 | a951 | 29 november 2021 160 173 184 original research community-based workers’ capacity to develop inclusive livelihoods for youth with disabilities in botswana ermien van pletzen, bryson kabaso, theresa lorenzo african journal of disability | vol 10 | a851 | 09 december 2021 correction erratum: the life stories and experiences of the children admitted to the institute for imbecile children from 1895 to 1913 rory du plessis african journal of disability | vol 10 | a812 | 02 august 2021 reviewer acknowledgement african journal of disability | vol 10 | a999 | 21 december 2021 195 207 208 page ii of ii abstract introduction methods ethical consideration results discussion limitations of the study conclusion acknowledgements references about the author(s) grace vincent-onabajo department of medical rehabilitation (physiotherapy), university of maiduguri, nigeria zulaiha mohammed department of medical rehabilitation (physiotherapy), university of maiduguri, nigeria citation vincent-onabajo, g. & mohammed, z., 2018, ‘preferred rehabilitation setting among stroke survivors in nigeria and associated personal factors’, african journal of disability 7(0), a352. https://doi.org/10.4102/ajod.v7i0.352 original research preferred rehabilitation setting among stroke survivors in nigeria and associated personal factors grace vincent-onabajo, zulaiha mohammed received: 19 nov. 2016; accepted: 01 mar. 2018; published: 17 july 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: incorporating patients’ preferences in the care they receive is an important component of evidence-based practice and patient-centred care. objective: this study assessed stroke patients’ preferences regarding rehabilitation settings. methods: a cross-sectional design was used to examine preferences of stroke patients receiving physiotherapy at three hospitals in northern nigeria. personal factors and preferred rehabilitation setting data were obtained using the modified rankin scale (to assess global disability) and a researcher-developed questionnaire. associations between preferences and personal factors were explored using bivariate statistics. results: sixty stroke patients whose mean age was 53.6 ± 14.8 years participated in the study. most of the participants (38.3%) preferred an outpatient setting, 19 (31.7%) preferred rehabilitation in their homes, 14 chose inpatient rehabilitation (23.3%), while 4 (6.7%) preferred the community. age and source of finance were significantly associated with preferences. the majority (66.7%) of those aged ≥ 65 years expressed a preference for rehabilitation in the home or community (x2 = 6.80; p = 0.03). similarly, most of the participants (53.3%) who depended on family finances preferred homeor community-based rehabilitation, while most of those who depended on employment income for finances preferred an outpatient rehabilitation setting (x2 = 16.80; p = 0.01). conclusion: a preference for rehabilitation in outpatient facilities predominated followed by home-based rehabilitation, and preferences varied based on age and source of finance. these variations in preferences have implications for making rehabilitation decisions. introduction acknowledging patients’ preferences regarding the care they receive is gradually occupying a position of prominence in health care systems. with the advent of shared decision-making, patient-centred care and evidence-based practice, clinical decisions are expected to incorporate patients’ views, values and preferences (charles, gafni & whelan 1997; dawes et al. 2005; epstein & street 2011). provision of individualised therapy, adherence to the ethical principle of patients’ autonomy, and facilitation of patient compliance and satisfaction with care along with improved treatment outcomes are some of the reported highlights of integrating patients’ perspectives into care (brazier, dixon & ratcliffe 2009; entwistle et al. 2010; preference collaborative review group 2008). rehabilitation is an important and often protracted phase of care that would benefit from patient-centredness for optimal outcomes (ozer & kroll 2002), and this phase is particularly crucial for individuals who suffer from physically disabling diseases such as stroke. stroke is the third most disabling condition worldwide (murray et al. 2012). in many developing countries such as nigeria, the burden of stroke is assuming an alarming dimension (johnston, mendis & mathers 2009; norrving & kissela 2013). the odds appear to be particularly stacked against stroke rehabilitation in nigeria given the poor health care infrastructure, shortage of rehabilitation professionals, lack of country-specific stroke clinical practice guidelines and non-adherence to existing global guidelines, and the still-existing apathy towards orthodox care and embrace of traditional beliefs, perceptions and practice in stroke care in some quarters. it is therefore imperative that every approach that can boost stroke rehabilitation in the country should be considered, and this would entail incorporating stroke patients’ preferences in important aspects of rehabilitation, including the setting in which rehabilitation takes place (magdon-ismail et al. 2016), into care decisions. rehabilitation setting, for instance, has been reported to affect the outcome of care (chan et al. 2013; couzner et al. 2013; olaleye & hamzat 2013). stroke patients’ preferences for specific rehabilitation settings have been explored in studies conducted in countries such as jordan (al-oraibi et al. 2011), the united states (gregory et al. 2010) and new zealand (hale et al. 2003). the home was preferred by an overwhelming majority of patients in the us and jordan studies while no clear preference was established in the new zealand study. it is however noteworthy that data on stroke patients’ rehabilitation setting preferences are largely unavailable in nigeria, as in other african countries. stroke rehabilitation in nigeria typically takes place during the acute in-hospital care on general medical wards or at physiotherapy gymnasia usually within the premises of the same hospitals where patients are admitted. unlike in developed countries, there are no inpatient rehabilitation facilities in nigeria, and nursing homes are also a rarity. therefore, post-discharge, rehabilitation either takes place in patients’ homes or outpatient physiotherapy facilities. it is however important to state that the choices of stroke patients regarding their preferred post-discharge rehabilitation setting are often not assessed nor considered while general assumptions are usually made. the lack of inpatient rehabilitation facilities may represent one of the implications of these assumptions, especially as the impetus to establish such facilities may partly depend on consumers’ expressed preference for specific settings. in order to gain insights into stroke patients’ preferences for rehabilitation settings that could in turn encourage incorporating such preferences into care decisions, facilitate provision of a variety of settings and possibly induce relevant health policies and strategies, this study examined the preferences of stroke patients in nigeria regarding rehabilitation setting. a further aim was to explore the personal factors that were associated with specific preferences. methods study design the study was a cross-sectional hospital-based survey. participants consecutive consenting community-dwelling stroke patients aged 18 years and above who were able to communicate sufficiently to complete the study instrument participated in the study. the ability to communicate was verified through face-to-face interview and respective stroke patient’s medical records. all the participants were receiving post-stroke physiotherapy on outpatient basis at the time of the study. study setting the study was conducted at the physiotherapy facilities of three government-owned hospitals in maiduguri, the capital city of borno state in nigeria. study instruments a researcher-developed questionnaire was used to obtain information on rehabilitation setting preference and the socio-demographic (age, gender, marital status, educational level, post-stroke employment status, source of finance and availability of social support) and clinical (side of hemiplegia, type of stroke and post-stroke duration) attributes of the participants. information on post-stroke duration was obtained from the participants and verified using their medical records while data on the type of stroke, as diagnosed by physicians and neurologists, was solely obtained from the participants’ medical records. another clinical attribute that was assessed was global disability, using the modified rankin scale (mrs). the mrs is a valid measure of disability on a six-point scale with values ranging from 0 to 5 (banks & marott 2007; van swieten et al. 1988). a score of 0 represents no symptoms, 1 depicts no significant disability, 2 represents slight disability, 3 represents moderate disability, while 4 and 5 represent moderately severe disability and severe disability, respectively. all the socio-demographic and clinical attributes were operationalised in this study as personal factors. to obtain data on the preferred rehabilitation setting, four options for rehabilitation setting were presented and described as follows: home: the physiotherapist visits and treats you at home; community: the physiotherapist visits and treats you in a centre close to your home; outpatient: the physiotherapist stays in the clinic and you visit to receive care and then return to your home the same day; inpatient: you are admitted into the hospital and receive care from the physiotherapist daily. the term ‘physiotherapist’ came up in all the descriptions of the rehabilitation settings because physiotherapists are often the sole professionals involved in stroke rehabilitation in nigeria due to the scarcity of other rehabilitation professionals. participants were requested to choose their preferred setting among the settings. procedure ethical approval for the study was obtained from the research and ethical committee of one of the participating institutions, while informed consent was obtained from each stroke patients who participated in the study. all data were obtained by the second author (z.m.) through face-to-face interviews from may to july 2014. data analysis all data (age, gender, marital status, educational level, post-stroke employment status, source of finance, availability of social support, side of hemiplegia, level of global disability, type of stroke, post-stroke duration and rehabilitation setting preference) obtained were presented as descriptive statistics. chi-square statistics were used to examine the associations between participants’ personal factors (age, gender, marital status, educational level, post-stroke employment status, source of finance, availability of social support, side of hemiplegia, level of global disability, type of stroke and post-stroke duration) and their preferred rehabilitation setting. for the purpose of the analyses, age categories were < 65 years and ≥ 65 years; marital status categories were married and unmarried (single, divorced and widowed) while source of finance was categorised as employment income, pension, family and charity. the level of statistical significance was set at α = 0.05. ethical consideration ethical approval for the study was obtained from the research and ethical committee of the university of maiduguri teaching hospital, maiduguri, borno state, nigeria. results sixty stroke patients, with a male majority (61.7%), participated in the study. the mean (standard deviation [sd]) age was 53.6 (14.8) years. details of the socio-demographic and clinical characteristics of participants are presented in table 1. table 1: personal factors of participants (n = 60). in terms of preferences for rehabilitation settings, 23 (38.3%) participants preferred an outpatient setting, 19 (31.7%) preferred rehabilitation in their homes, 14 chose inpatient rehabilitation (23.3%), while 4 (6.7%) preferred the community (figure 1). figure 1: rehabilitation setting preferences. with the results of the descriptive statistics showing that only four participants preferred the community and given the fact that rehabilitation in the home and community settings both represent domiciliary rehabilitation, the ‘home’ and ‘community’ options were presented as an entity (home or community-based) for the inferential analyses. among the personal factors explored, only age and source of finance were significantly associated with setting preferences. table 2 shows that a majority (66.7%) of those who were ≥ 65 years expressed their preference for rehabilitation in the home or community while most (44.4%) of those who were under 65 years expressed a preference for an outpatient rehabilitation setting (x2 = 6.80; p = 0.03). most (53.3%) participants who depended on family finances preferred rehabilitation in the home or community while an outpatient rehabilitation setting was preferred by most of those who depended on employment income for their finances (x2 = 16.80; p = 0.01). table 2: personal factors associated with preferred rehabilitation setting. discussion incorporating patients’ preferences into the care they receive is a cornerstone of evidence-based practice and represents an important premise of the shared decision-making model of care. an important decision regarding stroke rehabilitation is the setting in which rehabilitation takes place, and this was examined in this study. most participants expressed their preference for rehabilitation at outpatient facilities, closely followed by those who preferred rehabilitation at home. this finding may be considered as a reflection of the current status of stroke rehabilitation services in nigeria. as in many developing or african countries, rehabilitation facilities are underdeveloped in the country and the only available settings for stroke rehabilitation are the private residence of the patients and outpatient facilities. contrary to the findings of this study, however, one study conducted in the united states showed that stroke patients undergoing acute care overwhelmingly (85%) preferred rehabilitation in their homes post-acute care discharge (gregory et al. 2010). another study in jordan also showed a greater preference for home-based rehabilitation among stroke patients (al-oraibi et al. 2011). compared to other settings, home-based rehabilitation has been reported to allow for longer periods to carry out repetitive movement and functional training that facilitates motor relearning and ultimately, motor function recovery (reed, handžić & mcamis 2014). inpatient facility was another rehabilitation setting option in this study and it was preferred by a fifth of the participants. however, it is important to mention here that inpatient rehabilitation centres are not available in nigeria, although rehabilitation in such centres has been reported to result in far better stroke outcomes compared to rehabilitation in other settings such as the home, outpatient or nursing facilities (chan et al. 2013). the disturbing deficiencies in stroke rehabilitation in nigeria are also exemplified by the fact that stroke patients are routinely managed on general medical wards while stroke units, which have been shown to produce more positive outcomes during acute stroke care, are non-existent in the country (stroke unit trialists’ collaboration 2009; sun et al. 2013). a lot therefore needs to be done in order to standardise stroke rehabilitation in nigeria, as in most african countries, and concerted efforts by governments, aid agencies and rehabilitation professionals would be required. similarly, community-based rehabilitation centres are largely unavailable in nigeria which represent a cause for concern. the lack of community-based rehabilitation centres may be responsible for the setting being the least (6.7%) preferred, especially because preference is often influenced by knowledge of the existence of, and familiarity with, specific choices. age was a significant personal factor that was found to be associated with preferences, and about 6 out of every 10 stroke patients who were 65 years and above in this study preferred having rehabilitation in their homes or in the community. this observation may indicate that the elderly are more comfortable at home and have psychological and emotional attachments to the family and familiar environments such as their homes. frailty that often accompanies aging may also contribute to preference. although the influence of frailty on rehabilitation setting preference was not explored, the study assessed level of disability but found no significant association between preference and disability level. however a previous study showed that older stroke patients were less likely to be discharged home compared to those of younger age (nguyen et al. 2015). similarly, some studies conducted among various groups of the elderly in developed countries showed that institutional care was preferred over home care (gott et al. 2004; kok, berden & sadiraj 2015). most of the participants who were financially self-sufficient preferred the outpatient setting while those who depended on others for their finances preferred rehabilitation in their private homes or the community. a study that compared stroke rehabilitation in the home versus an outpatient setting in the united states showed that stroke patients with higher incomes had more outpatient visits than those with lower income (chan et al. 2009). with the financial burden associated with stroke, it is not surprising that finances could play an important role in patients’ preferences regarding the setting in which they receive rehabilitative care. although information on financial cost of stroke care in nigeria is scarce, it is important to state that the cost of domiciliary rehabilitation, particularly domiciliary physiotherapy, could be higher than the cost of outpatient care. reasons for this difference may include the fact that pricing for domiciliary rehabilitation services is not regulated, the resource requirements in terms of transportation, time and equipment are borne by the professionals and also because such services may represent profit-making ventures for the rehabilitation professionals. the observed association between financial self-sufficiency and rehabilitation setting preference suggests that preferences may be dependent on stroke patients’ perceptions of the financial implication of rehabilitation in various settings, and such perceptions may need to be addressed by rehabilitation professionals through counselling and appropriate education. aside from age and source of finance, no other personal factor was found to be significantly associated with preference for rehabilitation setting in this study. however it is important to note that some previous studies did not dwell on the effect of personal factors on rehabilitation setting preference (al-oraibi et al. 2011; hale et al. 2003). rather, they explored the association between setting preference and factors such as cost, transportation and waiting time, with results showing that these factors tipped some of the stroke survivors in favour of home-based rehabilitation (al-oraibi et al. 2011; hale et al. 2003). reports also show that preference for outpatient setting was linked to satisfaction with the availability of the array of equipments, opportunity to socialise and respite for carers (hale et al. 2003; thomas & parry 1996). the fact that opportunity to socialise was found to be so important to stroke survivors that it influenced their preference for outpatient rehabilitation setting as reported in the studies cited comes as no surprise. for instance, previous studies have shown that social support has positive and significant impact on important variables such as participation (vincent-onabajo et al. 2016a) and quality of life (vincent-onabajo et al., 2016b) of stroke survivors. however, the present study found no significant association between availability of social support (or otherwise) and rehabilitation setting preference. future studies may therefore be required to assess the impact that specific factors such as socialisation opportunity and the desire for support for caregivers (in the form of caregivers’ respite) have on rehabilitation setting preference instead of the effect of global social support, as was done in this study. furthermore, future studies on other factors that could influence preferences such as the patients’ psychological status, frequency of stroke (whether first-ever or recurrent stroke) and views about efficacy and quality of care are required in our setting. prospective studies with larger samples are also needed to examine the trend of preferences across the stroke continuum. limitations of the study the limitations of the present study include the small size of the sample, which precluded data treatment using more vigorous statistics such as multiple regression analyses to identify independent determinants of preferences. similarly, the small sample size could have been responsible for the very low number of participants that registered their preference for rehabilitation in the community. this necessitated grouping the home and community settings as an entity for the purpose of the inferential analyses, although it is important to mention that the two settings represent a domiciliary rehabilitation setting. the hospital-based design of the study may also limit the generalisability of the findings and future community-based studies would therefore be beneficial. in the same vein, the fact that the participants were all undergoing outpatient physiotherapy at the time of the study could have biased the results of the study and resulted in some participants’ preference for the familiar. although the impact of patients’ preference on the outcome of care was outside the scope of this study, it is important to note that patients’ preferences may not always be realistic, feasible or in their best interest and this should be borne in mind when interpreting the findings. also, given the debilitating effect of stroke on several body functions including mental functions, obtaining information on stroke patients’ preferred rehabilitation setting may not always be possible or feasible. conclusion the distribution of the preferences for rehabilitation setting in this study coupled with the variations in preferences based on the stroke patients’ personal factors highlight the variability of individual patient preferences and supports the need for patient-centred stroke rehabilitation procedures that assess patients’ preferences and take them into consideration when decisions about rehabilitation settings are made. practical implications assessment of stroke patients’ preferences for rehabilitation practice should constitute routine practice given the variations in preferred setting among different categories of patients. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions g.v.o. conceptualised and designed the study, analysed the data and drafted the manuscript. z.m. 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in nigeria’, topics in stroke rehabilitation 23, 305–310. https://doi.org/10.1080/10749357.2016.1155279 vincent-onabajo, g.o., muhammad, m.m., usman ali, m., ali masta, m. & aliyu, h.n., 2016b, ‘social support after stroke: influence of source of support on stroke survivors’ health-related quality of life’, international neuropsychiatric disease journal 5, 1–9. https://doi.org/10.9734/indj/2016/20240 article information authors: margaret booyens1 ermien van pletzen2 theresa lorenzo3 affiliations: 1department of social development, university of cape town, south africa 2centre for higher education development, university of cape town, south africa 3department of health and rehabilitation sciences, university of cape town, south africa correspondence to: margaret booyens email: margiebooyens@gmail.com postal address: po box 34104, rhodes gift 7707, south africa dates: received: 27 oct. 2014 accepted: 18 mar. 2015 published: 09 june 2015 how to cite this article: booyens, m, van pletzen, e. & lorenzo, t., 2015, ‘the complexity of rural contexts experienced by community disability workers in three southern african countries’, african journal of disability 4(1), art. #167, 9 pages. http://dx.doi.org/10.4102/ajod.v4i1.167 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. the complexity of rural contexts experienced by community disability workers in three southern african countries in this original research... open access • abstract • introduction • the country contexts in relation to human development • research methodology    • data collection • data analysis • results    • discriminatory attitudes       • the impact of poverty       • difficulty accessing community resources • local governance • the influence of donors • discussion • conclusions and recommendations • acknowledgements    • competing interests    • authors’ contributions • references • footnotes abstract top ↑ an understanding of rural communities is fundamental to effective community-based rehabilitation work with persons with disabilities. by removing barriers to community participation, persons with disabilities are enabled to satisfy their fundamental human needs. however, insufficient attention has been paid to the challenges that rural community disability workers (cdws) face in trying to realise these objectives. this qualitative interpretive study, involving in-depth interviews with 16 community disability workers in botswana, malawi and south africa, revealed the complex ways in which poverty, inappropriately used power and negative attitudes of service providers and communities combine to create formidable barriers to the inclusion of persons with disabilities in families and rural communities. the paper highlights the importance of understanding and working with the concept of ‘disability’ from a social justice and development perspective. it stresses that by targeting attitudes, actions and relationships, community disability workers can bring about social change in the lives of persons with disabilities and the communities in which they live. introduction top ↑ with their rights, talents and potential to learn too often overlooked, persons with disabilities form a structurally disadvantaged group in society, who are excluded from opportunities to participate actively in community life. when people are excluded from the social and economic life of their community and country they find it difficult to meet their own needs. this exclusion, in turn, places pressure on the government, non-governmental organisations (ngos) and the families of persons with disabilities to provide support and services. internationally, the focus has shifted from institutional or clinic-oriented rehabilitation services to the deployment of community disability workers (cdws), whose main aim is to facilitate the social inclusion of persons with disabilities (who 2010) to ensure that their needs are addressed. the purpose of this shift is to empower persons with disabilities to advocate for themselves, as far as they are able, their right to participate in all facets of community life. a number of factors, at individual, family, community, local, national and global levels, feed into the processes leading to poverty and the social exclusion of various social groups. these factors can be used to create an integrated framework for analysing social exclusion and poverty (burchard, le grand & piachaud 2002, cited in haralambos & holborn 2008). we have used this framework to analyse the experiences of a sample of cdws. we pay particular attention to the community context which, though rural, is nevertheless affected and shaped by factors at all levels, right up to global level. our motive for selecting rural communities is that persons with disabilities are particularly vulnerable and disadvantaged in rural contexts and, also, in some high density areas in urban settings. typical discriminatory attitudes to and beliefs about disability are exacerbated by income poverty, power dynamics, a dearth of needed resources and the consequent competition for the few available resources (rule, lorenzo & wolmarans 2006; van pletzen, booyens & lorenzo 2014). the result is social exclusion for the disabled. beyond the issue of income, poverty can also be more broadly understood as a lack of the power and resources to make choices and take advantage of opportunities (davids, theron & maphunye 2009). poverty is deeper and more widespread in rural than urban areas. in conducting this research we could clearly see the damaging effect of different forms of poverty on all aspects of the lives of individuals, families, households and whole communities (see also van pletzen et al. 2014). there are more persons with disabilities in rural than in urban areas (ilo 2007) as, in these areas, they are less likely to be socially mobile, yet research on disability in rural areas remains sparse, particularly concerning the challenges of rural community disability work. duncan, sherry & watson (2011:30) observe that rurality ‘is more than a geographical concept’. they expand the meaning of the term to include ‘the structure, state and quality of life of people living in sparsely settled places away from the direct influence of large cities and towns’. rural dwellers tend to be isolated from information, the media, networks, contact with other people and resources such as education and health services (lorenzo & cloete 2004; lorenzo, van pletzen & booyens 2015). but despite this isolation they are nevertheless directly influenced by government policy and legislation, corruption in the public and private sectors, and global factors such as an economic recession. the convention on the rights of persons with disabilities states the following about disability: [d]isability is an evolving concept and results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others. (un 2006:1) this understanding of disability resonates with burchard et al., whose integrated framework (2002, cited in haralambos & holborn 2008) indicates that it is people's interaction with the various systems in their environment – a rural context in our case – that generates the experience of disability, with social exclusion being a fundamental and well-documented feature internationally. working within a human rights perspective advocated by the world health organisation's community-based rehabilitation guidelines (who 2010), cdws are encouraged to identify, create and use opportunities to promote the inclusion and participation of persons with disabilities in the social and economic life of their communities and country. by removing barriers to community participation, they will enable persons with disabilities to satisfy their fundamental human needs. however, insufficient attention has been paid to the challenges that rural cdws face in trying to realise these objectives. most studies to date have focused either on the role of the cdw or on the needs of the disabled person. this study, therefore, sought a deeper understanding of the complex realities presented by rural communities and the skills needed by cdws working in these contexts. the country contexts in relation to human development top ↑ the research was conducted in botswana, malawi and south africa in 2011 and 2012. botswana is one of the world's most sparsely populated countries, with just under two million people, 41.2%, living in rural areas. it has a human development index (hdi) of 0.633, an improvement on the 0.446 recorded in 1980 (un 2011). malawi has a population of 13.9 million, around 82% of whom live in rural areas (un 2011). its hdi improved from 0.270 in 1980 to 0.400 in 2011, but the country remains in the ‘low’ human development category. south africa, like botswana, has an hdi that places it in the ‘medium’ bracket, with an improvement from 0.564 in 1980 to 0.619 in 2011. its population is just over 50 million, with 39.7% living in rural areas. life expectancy at birth in botswana, malawi and south africa is 53.2, 54.2 and 52.8 years respectively (un 2011). over a period of nearly 15 years, sintef studies on living conditions of persons with disabilities have been carried out in botswana, malawi, lesotho, zimbabwe and zambia (see http://www.safod.org). a regional study of the eastern and western cape in south africa was conducted in 2006 (loeb et al. 2008). a review of all these studies has demonstrated that the pattern of difference is consistent: individuals and households with a member with a disability experienced substantial gaps in access to services, social and economic status, access to information and to assistive devices and social participation (eide & ingstad 2013). persons with a disability experience lower levels of living, particularly those in rural areas, and women with disabilities are worse off than their male counterparts. this translates into a denial of equal opportunities for persons with disabilities to participate and contribute in their community and society, which is a violation of their human rights. research methodology top ↑ botswana, malawi and south africa were selected to add to the knowledge base of policy makers and service providers on contextual issues that influence the inclusion of persons with disabilities in communities in southern africa. in addition, they were the home countries of the four postgraduate students taking a diploma in disability studies at the university of cape town, who undertook the fieldwork and data gathering as a requirement of one of their courses. this qualitative study was based on a purposive sample of 16 experienced cdws working in rural communities in these three southern african countries. the selection criteria for the purposive sample of cdws were as follows. participants needed at least five years’ experience of community disability work in rural areas, and there had to be a balance of male and female participants from a range of ages. we also selected a mix of people who had a disability, either personally or in their family, and others who did not. the profile of the participants (using pseudonyms) is set out in table 1. the 16 cdws who participated in the study were eight women and eight men, ranging in age from 26 to 54 years. four of them had an impairment, one as a child, whilst 10 had a family member with a disability. their years of experience in working in the field of disability ranged from five to 27 years. the majority were in paid positions in ministries or departments of health in various job categories, including social work and community development. four worked for ngos. table 1: profile of participants (community disability workers). the cdws who participated in the research had a variety of job titles (see table 1). they are all referred to as ‘community disability workers’ in this article. this broad term encompasses a range of levels of education and training and of roles that extend beyond rehabilitation to embrace prevention, education, community development and policy practice1. data collection one in-depth interview was conducted with each cdw, which was divided into two parts of about an hour each, digitally recorded and transcribed. the interviewers each recruited four cdws and conducted interviews with them in english, at places and times convenient to the cdws in their home country. the interviews elicited the following details about the cdw: their childhood experiences specific events that influenced their choice of career low and high points in their work with persons with disabilities the biggest challenge they faced in working with disability issues the person or organisation that had taught them most about disability and development. this article draws on the cdws’ descriptions of and reflections on the contexts in which they performed their community-based rehabilitation work. data analysis top ↑ thematic content analysis was undertaken by a research team of academics from a range of backgrounds, and also by two of the students who conducted the interviews. the team read the transcripts independently and then met for the analysis process. two groups of four people analysed one transcript per group and then discussed all the emerging themes. fifteen themes were agreed upon. following this four pairs each analysed one additional transcript. five more themes emerged. the 10 remaining transcripts were then assigned to individual members of the team to analyse, using the expanded framework of themes. no new themes emerged, which suggested that a data saturation point had been reached. the group then identified two superordinate themes: the personal and the context. the latter theme is the topic of the current paper, the personal themes having been dealt with by rule, kahonde & lorenzo (2015). for context, core themes were further identified by grouping the sub-themes that had been initially identified through consensus discussions. dedoose, a software programme for qualitative data analysis, was then used to analyse the relationship between the identified themes. post-analysis, the students who had conducted the interviews undertook member checking. they went back to the participants, either telephonically or in person, to check whether or not the thematic framework identified by the research team was consistent with the information they had provided during the interviews. whilst the study opens a window on the day-to-day realities of a small group of cdws working in rural communities in three southern african countries and provides useful insight within the region, the findings are specific to these contexts. a further limitation is that the postgraduate students lacked extensive research experience at the time of data gathering, which may have affected the quality of their first interviews. with feedback from the academics between the first and second parts of the interviews, their interviewing skills improved substantially. results top ↑ thematic content analysis led to the emergence of five main themes related to the rural context of the cdws work: discriminatory attitudes the impact of poverty difficulty accessing community resources local governance the influence of donors. these themes are presented with supporting quotations from the interviews. discriminatory attitudes families, the building blocks of society, constitute the basic system or context in which individuals attempt to meet their needs. family dynamics can, however, work to exclude members with a disability, causing stress to all family members. our participants identified discriminatory attitudes, beliefs and actions of family members as significant problems for persons with disabilities. these included rejection, acceptance of the person but not helping them develop their full potential, and feelings of shame and consequent hiding of the person with disabilities: ‘it pains me a lot when i see a parent is in the forefront trying … to give names to his or her own child. like galu [dog]. is he a dog? ‘you cannot do anything, you are a disabled’ … so, i find it sometimes a big challenge to change people's attitudes’. (nick, malawi) ‘i think sometimes they get satisfied with the way the child is. they just have the feeling that there is nothing that can be done with that child. it's a kind of belief’. (chisomo, malawi) ‘the other situation is when i see most people hiding persons with disabilities, not taking them out. it really pushed me to make a difference in the life of persons with disabilities’. (mpho, south africa) there was evidence that in some instances families not only hid disabled family members but actually left them to their fate: ‘the most prominent low point in my life … was when i realised that some families had given up hope on their disabled family members and abandoned them as useless and futureless street beggars’. (mothusi, botswana) the findings also indicate that some family actions foster an exploitative and opportunistic type of inclusion, for example using a young disabled person to generate an income for the family by begging along the roadside. in response to such attitudes, the participants spoke about how they had facilitated the inclusion of persons with disabilities within families using demonstration, education and counselling strategies to foster changes in attitude and practice within the family context itself. however, cdws often find the process an uphill struggle, and frustrating when their efforts are thwarted, sometimes by parents. emak, a malawian cdw, recounted how some parents will ‘wear a face with a positive mind’ during contact at his office but will subsequently fail to ensure that their disabled child uses the allocated equipment at home. work with individual persons with disabilities can lead to positive changes in their self-image and in their ability to engage in collective action in an attempt to change their circumstances. kefilwe, a botswanan cdw, explained: ‘i have some people whom i have groomed and now they have grown and now they are voicing out [speaking out]. they are even part of the youth who are advocating for the rights of persons with disabilities’. discriminatory attitudes towards persons with disabilities within families and communities are self-reinforcing. the strength of these attitudes in rural areas may link to culture-related superstitious beliefs about persons with disabilities, and indeed the beliefs of persons with disabilities about themselves: ‘the biggest challenge is when persons with disabilities are stigmatised, marginalised and not respected, are not given opportunities to make decisions. they are not taken seriously like other people. it is still a challenge because the community still thinks that they cannot do anything for themselves’. (mpho, south africa) ‘at that time, you know, there were these primitive beliefs that if you get in touch with them [persons with disabilities] you will get children with disabilities … a lot were suffering out there in the bush without help, refusing to go to the hospitals, believing that they can sort their disabilities by curing them traditionally to get rid of witchcraft or whatever they believed in’. (kgomotso, botswana) the experiences of the cdws suggest that living in a rural community poses serious challenges to persons with disabilities. it limits their integration into community life and restricts their access to the resources they need, in large part resulting from discriminatory attitudes, traditional belief systems and a shortage of resources. in working to promote the social inclusion of persons with disabilities, our participants had to spend much time and energy combatting negative attitudes and building relationships, with the expectation of ultimately bringing about social change. the impact of poverty the participants encountered various forms of poverty, which, together with rurality, compounded the difficulties experienced with participation and inclusion by persons with disabilities. income poverty makes it difficult for parents to provide the level of care they intend for their disabled child. this situation is especially stressful for the parents of children with disabilities who have particular needs, for example, nutrition: ‘you will find out that particularly those with cerebral palsy … some are not able to eat anything that is eaten in the family. they need some special diet. and you can imagine how you would feel – that there's this poor soul … they have the right to live but the parents do not have the means to give proper care – they wish they could but they don’t have the means’. (masego, botswana) in their efforts to generate an income, some parents cannot find the time and money to enable their disabled child to benefit from a care facility: ‘they can’t find time to bring children to our centre. they keep looking for piece (any) work from different people and also doing business’. (chisomo, malawi) a south african participant spoke of families not accessing existing resources such as the government disability grant because they simply did not know about it. in one instance, the participant had written information on the disability grant, but because she was illiterate, she did not know what steps to take to access it: ‘he was staying with a very old … grandmother [who] did not have knowledge about the grant and that family was poor’. (noname, south africa) an important part of our participants’ work, as community disability workers, was, thus, to communicate information or to link families to networks through which they could access information. in malawi, for example, parents’ associations serve this networking function. it is critically important that, especially when working in contexts of poverty, cdws move beyond rehabilitating individual persons with disabilities to actively promoting their participation in the economy of the community and the country. two of our participants were clearly encouraging this: ‘some of them, after taking them for some course like in [name of centre and town], when they came back some … started their own gardens – some were tailors and some were poultry keepers’. (masego, botswana) ‘i wanted a person with a psychiatric disorder to work with a physically disabled person starting a car wash because the grant is little for them [persons with disabilities] … i also motivated for the local lodges to bring their cars … even in the schools i asked all teachers to bring their cars. so they started to realise that they can work for themselves. even the community started to respect and love them. they are not going around begging for money from people but they work for themselves’. (londi, south africa) difficulty accessing community resources our participants spoke about how difficult it was for persons with disabilities, their families – and indeed themselves – to access, good quality or even minimally adequate educational, transport and health resources in the rural areas in which they lived and worked. education systems that exclude: the poor quality of education offered at many rural schools affects the non-disabled youth and even more so the disabled. a participant described the quality of the teaching available in local schools: those teachers were worse, worse, worse, even in secondary we still had some unqualified teachers … [at primary [school], it was just the jc [junior certificate] school leavers, some of them old standard six teachers. [at] secondary school we still had some form five dropouts [teaching us] who had never been to the university. (kgomotso, botswana) income poverty constrains both access to education and the completion of schooling. several participants mentioned young people who had dropped out of school because of poverty. in rural areas, access to sparsely distributed schools requires transport, with related cost implications. in the case of children and young people with disabilities who require special schools, for whom integrated schools are not suitable, commuting is not an option. they must become boarders in one of the few towns or cities where these schools are located. inaccessible public transport systems: the public transport systems in rural areas were identified as a significant barrier to persons with disabilities, preventing them from meeting both their health related and educational needs. although not specifically mentioned by the participants, an inadequate transport system would also hinder access to social visiting, sporting and other community activities. the distance to resources, the cost of transport, the lack of vehicles with access for persons with disabilities, and the insensitivity of some public transport drivers, put obstacles in the way of school completion, and made it difficult for persons with disabilities to access hospitals for treatment and rehabilitation: ‘[trips to hospital are] also expensive for them because they are supposed to appoint personal assistants for coming here, so they pay more than expected’. (jeffrey, south africa) transport problems also hampered the participants in their work: ‘i wish all people with disability can be assisted but the shortage of transport and manpower is still a problem. i feel like my work is incomplete. i really need these problems to be solved’. (odirile, botswana) one participant exhibited the power of creative thinking in her strategy for sensitising taxi drivers to the needs of persons with disabilities: ‘we put them [the taxi drivers] in wheelchairs being blindfolded, and we put marshmallows in their mouth for them not to talk. so we used [drove] their taxis and they were passengers. we made sure that if they want to step out in the street, for example the hospital gate, we just pass for a little distance because we wanted them to feel the pain, as blind people do when you drop them’. (londi, south africa) poorly funded health systems: the funding of health services was a recurrent theme in the 16 interviews, particularly with regard to the way it obstructed access to good health services for the disabled. in the context of the global economic recession and a situation of competing demands for health spending by governments and international aid agencies, ngos and indeed government health services are finding it very hard to meet the health needs of the people whom they serve: ‘you really think no, we will consider this when funds are available and it's like they will never be available because now we have been hit by recession and another one is said to be coming, so i don’t think it will ever be given priority’. (masego, botswana) gil, a botswanan participant, said that a particular ngo had insufficient funds for equipment: ‘the challenges are finances … the organisations that we are working with … you find that they don’t have the muscle power … you find that the medical equipment is too expensive’. the absence of rehabilitation facilities for children was mentioned by two participants: for autistic children in rural areas of malawi, and for blind children and children with multiple disabilities in botswana. another commented on the local hospital's failure to budget for assistive devices: ‘another challenge is that of assistive devices. when you request to the hospital manager, they say ‘no budget’. it is difficult sometimes to work as a rehabilitation worker’. (emak, malawi) other participants highlighted the need for parents of children with disabilities to have a respite from their constant, demanding roles as carers – but pointed to the absence of respite care facilities. this finding raises the question of how much practical support health systems provide in rural communities for the special needs of family members and other household members caring for the disabled. the participants were keenly aware of and frustrated by the insufficiency and the inadequacy of the resources available to persons with disabilities and their families living in rural communities. there was evidence of how they used their community development competencies to address some of the access related difficulties, such as the insensitivity of some taxi drivers. it was also evident that some participants were facilitating the development of networks between service providers as an intervention to help address the needs of persons with disabilities. this is illustrated in the section that follows. local governance top ↑ in the rural communities that were the subject of our study there were intricate forms of political leadership, including both traditional authorities and elected politicians. cdws need to understand and be capable of engagement with these different types of authority and the power they exercise. the desire of politicians to garner votes can lead them to take misguided actions. for example providing aids to persons with disabilities without first assessing their needs. however, given the power that they wield, our participants sometimes found it difficult to confront them: ‘the politicians take those vulnerable people as ground for campaign … they go there and find that there are people with disabilities. what they think is to bring wheelchairs and tricycles and supply to them without proper assessment. so if you go there and say that this is not necessary for you, they [persons with disabilities] would say that it is the mp [member of parliament] who gave us this thing. so an mp is someone with high ranking in the community. you are also under the same mp. to go there and confront him is not easy at all’. (emak, malawi) a particular challenge our participants faced was deciding what action to take when leaders abused their positions of power and violated the rights of persons with disabilities for personal financial gain. one participant (country withheld to protect identity) recounted how the executive director of an agency had sold items meant for children, using the proceeds for her political campaign. she had become a member of parliament. a malawian participant offered an example of the inappropriate use of power by traditional leaders: ‘when we went to the village to train them [traditional leaders], they put money in here [they brought money into the picture]: ‘so unless you give us [money], we are going to be very passive’. this is an issue concerning their people, their subjects, but then they put [bring in the issue of] money … so i ended up reporting him to the traditional authority’. (nick, malawi) adding another dimension to community complexity is the range of ethnic groupings and belief systems, which may present barriers to the inclusion of persons with disabilities: ‘this work is very difficult to change someone, family or the community because of different beliefs and here in [name of town] there are many tribes, churches, traditional beliefs and they do differ so it needs more effort’. (odirile, botswana) the influence of traditional leaders on attitudes towards persons with disabilities adds to the complexity of the dynamics in rural communities: ‘yes, stigma was there. i remember one time, somebody refused to take water from the cup which that girl used. so that was a kind of discrimination. and i remember we were trying to find out why. but the elders [traditional leaders] said ‘’just leave it’’’. (emak, malawi) the importance and power of cdws working in positive partnerships with traditional power holders to promote opportunities for the social inclusion of persons with disabilities came across clearly in these comments from a malawian participant: ‘i go to the villages and identify those children with orthopaedic conditions which can be corrected surgically … i need to mobilise the traditional authorities. i befriend them and tell them my objective of going to their areas. and all the things which they need to know … they call the group village heads together and i address them in front of their traditional authorities. and from there, the group village heads talk to their village heads about this project. and then later on, i send them the dates so that they should announce in several villages … someone is coming here to look at our kids who are disabled, that have orthopaedic conditions. so i have worked with them and i am still working with them’. (nick, malawi) the rural cdw's role extends beyond mobilising politicians and traditional leaders to developing processes to include persons with disabilities. the cdw must also work to influence the attitudes of power holders to persons with disabilities. whilst politicians anywhere in the world may undertake ill-conceived actions to garner votes, our findings confirm that it is particularly in rural areas that traditional beliefs influence attitudes, relationships and actions, serving to increase the difficulties persons with disabilities face in trying to meet their needs. the influence of donors top ↑ our participants noted that donor funding affected their work because it had a direct effect on the quality and quantity of resources available to communities, especially in the current global economic recession. the problem was not just a matter of the adequacy of resources; the donors’ expectations and priorities could also create problems for cdws. the study revealed that the donor of a malawian ngo preferred the ngo to supply evidence of working with large rather than small numbers of persons with disabilities. the donor evidently did not share the participants’ insight and understanding that lower statistics possibly pointed to the effectiveness of services: ‘you find that when you come up with less statistics, they question you. i remember … we had a meeting in [name of town] … and there was an auditor sent by the donors. they asked me ‘why are your statistics low?’ i said i have to be proud of that. they asked ‘why?’ i said, if i had a lot of persons with disabilities … it means that primary health care is not done … but they were not happy with that. they wanted big statistics … i was surprised. why do you want [big] statistics? you want the people to suffer, so that you can give us money. no, that is not [good]’. (emak, malawi) another malawian participant recounted how a northern association for persons with disabilities had switched from providing assistive devices to only funding repairs of the devices. his perplexity is reflected in his question: ‘but my question is, why can you say repair? repair what, if you do not provide the assistive devices?’ (jimu, malawi). jimu recounted how another donor requested the recipient malawian ngo to stop paying for the secondary schooling and college fees, of young persons with disabilities, resulting in some having to drop out. he also told how a donor had refused to fund one type of disability, selecting another, saying that the changes brought about through services to the latter were more visible: ‘but when i was working at [name of organisation], they refused to fund work with cerebral palsy because they said that they can’t see a change and opted for those with blindness because they could see the change. but with cerebral palsy, i see a lot of changes’. (jimu, malawi) the participants painted a picture of the power that donors wield in their relationships with recipient organisations. the frustration they experienced in their attempts to influence these relationships in the context of cash-strapped, under-resourced rural communities was evident. discussion top ↑ overall, the cdws in this study demonstrated steadfast commitment to promoting the social inclusion of persons with a disability. what makes this remarkable is that they were clearly not being given the support they needed whilst working in communities that present daunting problems and challenges. our findings point to the complexity of the rural context in which cdws work, and persons with disabilities live. a range of opportunities for and barriers to the social inclusion of persons with disabilities in family and community life emerges in our study. the particular complexity of rural contexts becomes evident when one uses the integrated framework of burchard et al. (2002, cited in haralambos & holborn 2008) to analyse the interaction both within and between the various systems. there are numerous interrelated challenges that make up a complex context in which to work towards the inclusion of persons with disabilities and ultimately facilitate social change. much research still needs to be undertaken to understand some of these interrelationships better, for example the potentially compounding effect of poverty on discriminatory attitudes. the gap is indeed wide between the goals for the social inclusion of persons with disabilities, set by the convention on the rights of persons with disabilities (un 2006) and the cbr guidelines (who 2010) on the one hand, and the contextual realities of community disability practice in rural areas of developing countries on the other. family attitudes and behaviour prevent the persons with disabilities from developing to their full potential and doing what is in their capability to do in order to meet their own needs. together, discriminatory attitudes of family members and others towards persons with disabilities, various types of poverty and inappropriately used power, in relationships between people and organisations at various levels, present formidable and interlinked barriers to participation. similar barriers are described in the typology of obstacles, of barberton, blake & kotze, to poor people seeking to challenge power imbalances (1998): obstacles of location, resources, organisation and attitude. cdws and generic community development workers have much in common, both groups targeting these various obstacles to participation. describing the limitations of development strategies, krznaric (2007) notes that: [development strategies] display an overwhelming focus on individual actors, organised social groups, and institutions, with little acknowledgement that societies and institutions are composed of human relationships that are a potential locus of change. (p. 44) however, disability brings into development work a specific aspect of the attitude obstacle. discriminatory attitudes towards persons with disabilities, leading to exclusion from families and communities, are fuelled by cultural beliefs about persons with disabilities that are particularly strong in rural communities. our study leads us to question whether or not generic community development workers are sensitive to this reality and are equipped to deal with it. these discriminatory beliefs determine how and to whom organisations allocate resources, which are increasingly limited, resulting from the economic situation globally and in the countries concerned. organisations, both public sector and not-for-profit, lack sufficient resources to meet the needs of those whom they serve. the importance of forming or joining networks with other service providers, to develop collective power through collaboration and partnerships, is evident and community disability workers make significant contributions in this regard (lorenzo et al. 2015). issues of poverty dominate all forms of development work in rural communities. disability exacerbates the problems and, ironically, poverty alleviation measures often exclude disabled individuals – by default, if not by intent. so many of our participants were making an effort to advocate generally for their clients’ inclusion in mainstream community development initiatives, although they could not always take proactive action to address the particular circumstances of each one. poverty, defined from any perspective, points to fundamental human needs not being met (max-neef 1991). micro-level interventions can help people to meet their basic sustenance needs but are insufficient to foster the social inclusion of persons with disabilities. cdws need to educate persons with disabilities, their households, families and communities about their rights, and help them to access those rights. they need to mobilise and capacitate them to exercise their power collectively to influence policy and participate in decision-making for the allocation of resources at organisational, community and broader levels. drawing on korten's classic text (1990), we can postulate that the active participation of persons with disabilities, in the organisations that serve them, could encourage those organisations that focus on a relief and welfare type of service delivery to become more involved in community development, in influencing policy and in joining relevant global social movements. this points to the need for cdws to facilitate the building of alliances and partnerships. it is essential that cdws view donor organisations and their contribution to development in a very critical light, as some of the participants, in this research, indeed did. the findings offer evidence of the power of donors and the (sometimes negative) impact of their decisions on local organisations and the persons with disabilities whom they serve. organisations for persons with disabilities need to give careful thought to the extent to which they should rely on donor funding. a community based rehabilitation approach necessitates holistic local resource mobilisation, rather than simply relying on ‘fundraising’ (who 2010). opportunities for persons with disabilities to participate in the economy, in other words, to work, are vital to alleviate income and other forms of poverty. interventions that successfully include persons with disabilities in the economy of the community can help to reduce family stress, increase the self-esteem and independence of persons with disabilities, and promote positive community attitudes. poverty and the dynamics between power holders were found to be cross-cutting issues that add to the complexity of the rural context, compounding the difficulties in meeting the needs of persons with disabilities, and confounding the efforts of cdws to promote their social inclusion in communities. power is at the heart of all relationships. at times, promoting the social inclusion of persons with disabilities requires tapping into the persuasive power of important community stakeholders. at other times it requires changing the balance of power in relationships through counselling, community mobilisation, advocacy and a range of other strategies all directed towards empowering persons with disabilities (lorenzo 2008; lorenzo & cloete 2004; o’ toole & mcconkey 1995; who 2010). an analysis of power holders, power relations and those who benefit from the current situation in families, communities and at broader levels, will alert the cdw to possible sources of resistance to change, whether these are political or traditional leaders, donors, families or persons with disabilities themselves. if persons with disabilities are included this equates to their capability to ‘do for themselves’, to contribute according to their capability to meet their own needs. it means a shift from charity to facilitating the optimal participation of persons with disabilities in their own development. inclusion at a family level is essential to break down attitudinal and other barriers and to help families become the context in which persons with disabilities can develop their full potential (mckenzie & müller 2006). community disability workers facilitate the coordination of services across sectors to enable a supportive family life and community living. conclusions and recommendations top ↑ the study confirms the relevance and value of community based rehabilitation, a strategy of community development that works towards the equalisation of opportunities, not only through rehabilitation, but also by addressing poverty and structural barriers, and also promoting the social inclusion of all persons with disabilities (who 2010). it confirms the importance of understanding and working with the concept of ‘disability’ from a social justice and development perspective, and not only the functional limitations related to an impairment. the interventions of cdws need to document, target, measure and monitor the many barriers to inclusion and participation of persons with disabilities that are created, not by the impairments themselves, but by social barriers related to discriminatory attitudes, actions, relationships and power imbalances in the complex rural contexts in which they live. the social inclusion of persons with disabilities requires changes in attitudes, actions and relationships in families and communities. for this reason, we advocate for the training and support of cdws, to help them adopt a systems perspective of the community context and to develop an understanding of the power dynamics at play in and between systems – individual, family, organisation and community – and to learn how to influence them. arguably this has been neglected in the training and support offered to cdws. moreover, the systems in which they work are often ill-equipped to respond to these challenges. donors should preferably be brought into the aforementioned partnerships with service providers and persons with disabilities, to deepen their understanding of the local context and to ensure that local organisations exercise more power in donor decision-making processes (van blerk 2005). of potential value to cdws and their employing bodies would be access to donor profiles and research into the attitudes and thinking that influence decisions about the allocation of both financial and non-financial resources. the effective implementation of disability-inclusive development requires combined efforts, through partnerships and alliances of persons with disabilities, their families, organisations, donors, and relevant governmental and non-governmental services. however, an unanswered question that requires further research is, whether the promotion of such development in rural (and other) communities necessarily requires specialist community disability workers, or whether generic community development workers could be adequately trained and equipped for the challenge. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions m.b. (university of cape town) was responsible for the data analysis and lead author of this article. e.v.p. (university of cape town) assisted to conceptualise the project; data analysis; co-author of this article. t.l. (university of cape town) conceptualised the project; was the project leader; raised funds; supervised post-graduate students; involved in all stages of data collection and analysis; co-author of this article. references top ↑ barberton, c., blake, m. & kotze, h. (eds.), 1998, creating action space: the challenge of poverty and democracy in south africa, idasa and david philip, cape town. davids, i., theron, f. & maphunye, k.j., 2009, participatory development in south africa: a development management perspective, 2nd edn., van schaik, pretoria. duncan, m., sherry, k. & watson, r., 2011, ‘disability and rurality’, in t. lorenzo (ed.), intentions, pillars and players, disability catalyst africa, series no. 1, disability innovations africa, disability studies programme, school of health and rehabilitation sciences, university of cape town, cape town. eide, a.h. & ingstad, b., 2013, ‘disability and poverty – reflections on research experiences in africa and beyond’, journal of disability 2(1), 7 pages. http://dx.doi.org/10.4102/ajod.v2i1.31 haralambos, m. & holborn, m., 2008, sociology: themes and perspectives, 7th edn., collins, london. homan, m., 2004, promoting community change: making it happen in the real world, 3rd edn., thomson learning/brooks/cole, belmont. international labour organisation (ilo), 2007, ‘facts on disability in the world of work’, viewed 02 may 2013, from http://www.ilo.org/wcmsp5/groups/public/—dgreports/—dcomm/documents/publication/wcms_087707.pdf korten, d.c., 1990, getting to the 21st century: voluntary action and the global agenda, kumarian, west hartford. krznaric, r., 2007, how change happens. interdisciplinary perspectives for human development, oxfam research report, oxford. loeb, m.e., eide, a.h., jelsma, j., ka’toni, m. & maart, s., 2008, ‘poverty and disability in eastern and western cape provinces, sa’, disability and society 23(4), 311–321. http://dx.doi.org/10.1080/09687590802038803 lorenzo, t., van pletzen, e. & booyens, m.g., 2015, ‘determining the competencies of community based workers for disability-inclusive development in rural areas of south africa, botswana and malawi’, international journal of remote and rural health. lorenzo, t., 2008, ‘we are also travellers: an action story about disabled women mobilizing for an accessible public transport system in khayelitsha and nyanga, cape metropole, south africa’, south african journal of occupational therapy 39(1), 32–40. lorenzo, t. & cloete, l., 2004, ‘promoting occupations in rural communities’, r. watson & l. swartz (eds.), transformation through occupation, whurr publishers, london. max-neef, m.a., 1991, human scale development: conception, application and further reflections, apex, new york. mckenzie, j. & müller, b., 2006, ‘parents and therapists: dilemmas in partnership’, b. watermeyer, l. schwartz, t. lorenzo, m. schneider & m. priestley (eds.), disability and social change: a south african agenda, human sciences research council (hsrc) press, cape town. o’toole, b. & mcconkey, r. (eds.), 1995, innovations in developing countries for people with disabilities, paul h brookes publishing company, baltimore. rule, s., kahonde, c. & lorenzo, t., 2015, ‘’‘when i grow up i would like to be …’’ factors affecting career choice of community disability workers in southern africa’, international journal of disability, development and education. rule, s., lorenzo, t. & wolmarans, m., 2006, ‘community-based rehabilitation: new challenges’, b. watermeyer, l. swartz, t. lorenzo, m. schneider & m. priestley (eds.), disability and social change: a south african agenda, hsrc press, pretoria. southern african federation of the disabled (safod), 2014, ‘country-focused documents’, viewed 09 february 2015, from http://www.safod.org united nations (un), 2006, convention on the rights of persons with disabilities, un, new york. united nations (un), 2011, human development report 2011, un, new york. van blerk, r., 2005, the arrogance of giving, community development resource association (cdra) nugget, november, cdra, cape town. van pletzen, e., booyens, m. & lorenzo, t., 2014, ‘community disability workers’ potential to alleviate poverty and promote social inclusion of people with disabilities in three southern african countries’, disability and society. http://dx.doi.org/10.1080/09687599.2014.958131 world health organisation (who), 2010, community-based rehabilitation guidelines, viewed 02 may 2013, from http://www.who.int/disabilities/cbr/guidelines/en/. footnote top ↑ 1policy practice involves, inter alia, developing, analysing and refining policies that guide the operations of government and non-governmental organisations that have an impact on individuals, groups and communities (homan 2004). abstract introduction materials and method results discussion strengths and limitations conclusion acknowledgements references appendix 1: procedures used for the muscle test. appendix 2: 10-m walk test diagramme. appendix 3: short-form 36-item health survey questionnaire, physical and mental components. appendix 4: womac: index de sévérité symptomatique de l’arthrose des membres inférieurs. appendix 5: consent form. appendix 6: hip range of motion based on grade of hip osteoarthritis in relation to norms about the author(s) todègnon f. assogba neuro musculo skeletal lab (nmsk), faculté des sciences de la motricité, université catholique de louvain, brussels, belgium clinique universitaire de médecine physique et de réadaptation, centre national hospitalier et universitaire hubert k. maga, cotonou, benin didier d. niama-natta clinique universitaire de médecine physique et de réadaptation, centre national hospitalier et universitaire hubert k. maga, cotonou, benin toussaint g. kpadonou clinique universitaire de médecine physique et de réadaptation, centre national hospitalier et universitaire hubert k. maga, cotonou, benin teefany lawson clinique universitaire de médecine physique et de réadaptation, centre national hospitalier et universitaire hubert k. maga, cotonou, benin philippe mahaudens neuro musculo skeletal lab (nmsk), faculté des sciences de la motricité, université catholique de louvain, brussels, belgium service d’orthopédie et de traumatologie de l’appareil locomoteur, cliniques universitaires saint-luc, brussels, belgium christine detrembleur neuro musculo skeletal lab (nmsk), faculté des sciences de la motricité, université catholique de louvain, brussels, belgium citation assogba, t.f., niama-natta, d.d., kpadonou, t.g., lawson, t., mahaudens, p. & detrembleur, c., 2020, ‘disability and functioning in primary and secondary hip osteoarthritis in benin’, african journal of disability 9(0), a675. https://doi.org/10.4102/ajod.v9i0.675 original research disability and functioning in primary and secondary hip osteoarthritis in benin todègnon f. assogba, didier d. niama-natta, toussaint g. kpadonou, teefany lawson, philippe mahaudens, christine detrembleur received: 19 aug. 2019; accepted: 27 aug. 2020; published: 12 nov. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in africa, primary hip osteoarthritis seems to be less frequent than in europe. sickle cell disease is responsible for aseptic osteonecrosis of the femoral head associated with secondary hip osteoarthritis. very little evidence is available on the influence of aetiology (primary and secondary) and radiographic status on pain and disability in a beninese population with hip osteoarthritis. objectives: the aim of this study was to compare the impacts of aetiology and radiographic status on pain, disability and quality of life in a beninese population with hip osteoarthritis. method: this was a descriptive cross-sectional study, including participants recruited in the clinic of physical medicine and rehabilitation at the national teaching hospital in cotonou. assessment was based on the international classification of functioning, disability and health model. the main outcomes were severity of osteoarthritis, pain, range of motion, muscle strength, gait speed and quality of life. statistical comparisons between the aetiologies were performed using a t-test or rank sum test. one-way analysis of variance was used to test the effect of radiographic status. results: forty-nine participants (26 women and 23 men; mean age [standard deviation] 40.5 [17.9] years) were recruited. according to the aetiology (59.2% and 40.8% of primary and secondary osteoarthritis, respectively), there were no significant differences for any of the outcomes. grades i, ii, iii and iv osteoarthritis were observed in 22.4%, 14.3%, 26.5% and 36.7% of the participants, respectively. participants with grade iv osteoarthritis were more affected than those with grades i, ii and iii based on the kellgren and lawrence classification. conclusion: aetiology did not influence pain, gait speed or quality of life. participants with grade iv osteoarthritis had more pain, were more limited in walking and had a more impaired quality of life. keywords: hip osteoarthritis; pain; gait speed; quality of life; africa. introduction osteoarthritis is a chronic condition that affects 11% of the general adult population and is the most common form of arthritis (pereira et al. 2011). hip osteoarthritis (hoa) is among the most common joint diseases and is therefore a major social and health problem (danielsson & lindberg 1997). hip osteoarthritis is one of the main causes of disability in the elderly (loeser 2010), with prevalence increasing progressively with age (jordan et al. 2009; oliveria et al. 1995). however, little is known about the prevalence of hoa in africa. as demonstrated by dowman et al. (2012), hoa is often seen as a minor health problem and has been neglected in research and resource allocation throughout africa despite potential related disabilities (such as abnormal gait patterns and lower physical function) and decreased quality of life (qol). according to their aetiologies, there are two types of hoa: primary and secondary. the primary hoa is idiopathic with no hip malformation. it is the most common hoa in western countries. the development of primary hoa is favoured by a probable genetic predisposition that affects cartilage metabolism, with other contributing factors such as biomechanical constraints (englund 2010). secondary hoa is a result of changes in the microenvironment of the cartilage. its aetiologies include congenital hip abnormalities, metabolic defects, infections and blood disorders such as sickle cell disease (kpadonou et al. 2011; oniankitan et al. 2009; ouedraogo et al. 2015). this hereditary disease is more frequent in sub-saharan africa, india, the middle east and brazil (lespasio, sodhi & mont 2019). sickle cell disease is responsible for aseptic osteonecrosis of the femoral head resulting from ischemia associated with secondary hoa (akinyoola, adediran & asaleye 2007; kpadonou et al. 2011; oniankitan et al. 2009; ouedraogo et al. 2015). several factors that would contribute to disability and pain caused by hoa have been identified (arokoski et al. 2004; juhakoski et al. 2008; kondo et al. 2017; steultjens et al. 2000; thumboo, chew & lewin-koh 2002). according to dekker et al. (1992): [r]adiographically assessed degeneration of cartilage and bone is associated with pain and disability, but it appears that the association is rather weak thus, it seems that status of the joint is not enough to explain pain and disability in patients with osteoarthritis. arokoski et al. (2004) have shown that men with hoa have significantly lower muscle strength than their ageand sex-matched controls. van baar et al. (1998) showed that in hoa, disability was associated with muscle strength, joint range of motion (rom), pain, ability to cope with pain and psychological well-being, but the level of cartilage and bone degradation assessed by radiography did not influence the disability. in accordance with the literature, there are few studies in africa, and particularly in the republic of benin, that have examined factors associated with functioning and disabilities in patients with hoa. in sub-saharan africa, secondary hoa occurs in a younger population, and aseptic osteonecrosis of the femoral head is one of the most reported risk factors (kpadonou et al. 2011; oniankitan et al. 2009; ouedraogo et al. 2015). the main purpose of this study was to compare the impact of primary and secondary hoa on body structures and function, activity and qol. the secondary purpose was to explore the impact of radiographic state in modifying body structures, function and disability in beninese participants with hoa. we hypothesised that beninese participants with secondary hoa would be more affected with regard to impairments, activity limitations and qol than those with primary hoa. we further hypothesised that greater degradation of cartilage and bones, assessed by x-ray, would be associated with more impairments, activity limitations and reduced qol. materials and method study design and setting this is a cross-sectional, descriptive study. participants were recruited from a rehabilitation clinic and assessed once through a series of tests and questionnaires. participants this study focused on participants with hoa in the republic of benin, a west african country. participants were recruited from the clinic of physical medicine and rehabilitation at the national teaching hospital in cotonou. participants with bilateral or unilateral symptomatic hoa diagnosed by radiography were recruited. in participants with bilateral hoa, the most painful hip was selected for analysis. the diagnosis of hoa was based on the american college of rheumatology classification criteria and/or kellgren and lawrence (1957) radiographic classification (vignon et al. 1999). participants with total hip replacements, neurological or psychiatric disorders or any deficit that would prevent them from completing the questionnaires and assessments were excluded. recruitment procedure participants with an hoa diagnosis were initially identified from the rehabilitation care registry, focusing on the period between 01 june 2008 and 30 april 2019. from a contact list of 147 eligible participants, 69 were reached and invited to participate in the study. out of the 69 reached, 4 died (information given by family members), 11 had total hip replacements and 2 refused to participate. the remaining 52 participants who agreed to participate were invited for a physical medicine consultation. after the screening consultation, three participants were excluded because they did not meet the selection criteria (diagnosis not consistent with hoa). finally, 49 participants meeting the inclusion criteria participated in the study. outcomes assessments were based on the international classification of functioning, disability and health (icf) model (who 2001). applying this model to hoa will enable identification of the impairments, activity limitations and participation restrictions experienced by the participants (figure 1). figure 1: evaluation of patients using the international classification of functioning, disability and health model. measurements of international classification of functioning, disability and health body structures and function the state of cartilage and bone was assessed by radiography with the kellgren and lawrence (1957) radiographic classification (vignon et al. 1999). pain was assessed with the oxford hip score (ohs) and the numerical rating scale (nrs), hip rom with goniometer and hip strength with the medical research council (mrc) scale. the ohs is a standard patient-reported outcome measure, developed to assess function and pain in participants with hoa (martinelli et al. 2011) or undergoing total hip replacement surgery, particularly in the context of clinical trials (dawson et al. 1996; murray et al. 2007). the ohs has also been used for the assessment of participant outcomes, including physical therapy and use of joint supplements (murray et al. 2007). the scale consists of 12 items with 5 categories of response, 0–4 (worst to best), with the overall score ranging from 0 to 48, where 48 represents the best score (murray et al. 2007). the nrs is a unidimensional measure of pain intensity in adults, including those with chronic pain resulting from rheumatic diseases. the 11-point numeric scale ranges from 0, representing no pain, to 10, representing the most intense imaginable pain. hip rom was measured by the goniometer, whose validity has been established (prather et al. 2010). hip flexion, adduction and abduction motions were measured in the supine position, with the opposite thigh fixed in a neutral position. internal and external rotation of the hip was measured in prone (with the hip in a neutral position and the knee in 90° flexion) and sit position (with the hip and knee in 90° flexion). hip extension was measured with the participant lying on one side (hip in a neutral position and knee in extension). goniometer-based measure has shown high intrarater reliability (intraclass correlation = 0.82–0.95) except for adduction (icc = 0.50–0.72) (holm et al. 2000). hip muscle strength was measured using the mrc scale with a rating of 0–5. psychometric studies of mrc have shown high reliability for osteoarthritis (intraclass coefficient, > 0.95) (youdas, madson & hollman 2010). participants were placed in a position that enabled support for their body, so that they could focus their efforts on the tested muscle. the tested muscle was first placed in an antigravity position. if muscles were too weak to move the segment against gravity, they were tested in the horizontal plane. the proximal part of the tested limb was stabilised to reduce the risk of compensation by other muscles than those tested. manual resistance was applied in the plane of movement for the tested muscles. resistance was applied by progressive pressure. in most cases, there was a long lever in the arm (appendix 1). measurements of international classification of functioning, disability and health activity activity limitations were assessed by the 10-metre walk test (10mwt). the test was performed on a 14-metre pathway, where each participant was asked to walk at his or her own comfortable speed. the participant’s performance was timed over the middle 10-metre course. the initial 2 metre served to reach a constant speed. the final 2 metre prevented the participant from decelerating prematurely (juhakoski et al. 2008; tani et al. 2018) (appendix 2). measurements of international classification of functioning, disability and health participation to assess the qol, the short-form 36-item (sf-36) health survey questionnaire and west ontario and mcmaster (womac) osteoarthritis index (appendices 3 and 4) were used. the sf-36 is a generic validated questionnaire, acceptable for the long-term measurements of qol in osteoarthritis and validated in french (hayes et al. 1995; walters, munro & brazier 2001). this measure allows quantification of the physical and mental components (pc and mc) of qol. it was shown to be reliable and valid (mchorney et al. 1994; mchorney, ware & raczek 1993) and consists of eight subscales: physical function, role limitations resulting from physical problems, bodily pain, general health perceptions, role limitations resulting from emotional problems, mental health, social functioning and vitality. each score ranges from 0 to 100, where 0 is the poorest possible health state and 100 is the best health state. the womac questionnaire was developed to assess pain, joint stiffness and disability related to osteoarthritis of the knee and hip (bellamy et al. 1988). it contains 24 questions, 5 related to pain, 2 to stiffness and 17 to physical function. it provides an excellent overview of a participant’s functional capacity and complements the more objective data provided by magnetic resonance imaging, arthroscopy, cartilage biopsy and radiographs. data analysis all variables with a normal distribution and equality of variance were presented as means with standard deviation (sd). for non-normally distributed variables, non-parametric descriptive statistics were used, and the results were expressed as medians and 1st and 3rd quartiles (25% – 75%). statistical analyses were performed using sigmaplot from spss (version 13.0). the significance level was set at p < 0.05. t-test or mann–whitney test for non-parametric variables was used to determine if participants with secondary hoa are more affected in structure and function, activity and participation than those with primary osteoarthritis. to establish if the degree of degradation in the kellgren and lawrence radiographic classification was associated with impairments, activity limitations and decreased qol, we used a one-way analysis of variance (anova) if the normality and equality of variance tests passed or kruskal–wallis one-way anova on ranks (if the normality and equality of variance tests failed) with one factor (factor = grade, that is, grade i, grade ii, grade iii and grade iv). a post hoc test was used to identify significant differences between the different radiographic grades. ethical consideration adult participants or parents of minor participants freely gave signed consent to participate in the study. the clinical study was conducted with authorisation from the hospital institution and informed consent of the patients. this is the current regulation in republic of benin. this study is part of a thesis project that has received the approval of the local ethics committee of the university clinic of physical medicine and rehabilitation of the centre national hospitalier et universitaire hubert k. maga in cotonou/benin under the number: ce 07-2018/ms/cnhu-hkm/cumpr/ce/sp. results characteristics of participants our sample of 49 participants comprised 26 women and 23 men, with a mean age of 40.5 (sd 17.9) years (range, 11–70 years). participants had an average body mass index (bmi) of 25.6 kg/m2 (sd 7.4); 40 participants had unilateral and 9 had bilateral hoa. according to kellgren–lawrence grades, the radiographic severity was of grade i in 22.5% (n = 11) of participants, grade ii in 14.3% (n = 7), grade iii in 26.5% (n = 13) and grade iv in 36.7% (n = 18). twenty (40.8%) participants had secondary osteoarthritis resulting from aseptic osteonecrosis of the femoral head, and 29 (59.2%) had primary osteoarthritis (table 1). table 1: characteristics of participants. effects of aetiology on body structure and function, activity and participation participants with primary hoa were significantly older (median 51 [interquartile range – iqr – 43.5–61] vs. 23 [iqr 16–27.7] years, p < 0.001) and had significantly higher bmi (median 26.2 [iqr 24.7–31.9] vs. 21.5 [16.7–22.7] kg/m2, p < 0.001) than those with secondary hoa. there were no statistically significant differences between primary and secondary hoa for pain assessed by nrs scale (mean 6.4 [sd 1.8] vs. 5.8 [sd 2.4], respectively, p = 0.35) and ohs scale (mean 23.6 [sd 8.1] vs. 26.4 [sd 9.9], p = 0.28). there were no statistically significant differences for hip rom and muscles strength except for the external rotators (external rotator muscles 3 and 4/5 for secondary vs. primary hoa, respectively; p = 0.01) (table 2). table 2: comparison of body structures and function in primary versus secondary osteoarthritis. in terms of activity (10mwt), no statistically significant differences were observed between participants with primary or secondary hoa (12.2 s vs. 12.7 s) (table 3). table 3: comparison of activity and participation in primary versus secondary osteoarthritis. in terms of qol, the difference was not significant (p = 0.2, 0.5, 0.17) between primary and secondary aetiology (sf-36 pc, 40.9% vs. 48.5%; sf-36 mc, 56.8% vs. 61.2%; womac, 47.6% vs. 40.4%) (table 3). effects of grades of x-rays on structure and function, activity and participation grade of hoa significantly affected function, activity and qol (tables 5 and 6). no statistically significant differences for age, weight, height, bmi, hip rom or muscle strength were reported between grades i, ii, iii and iv of hoa (tables 4 and 5). table 4: comparison of age and anthropometry based on grades of hip osteoarthritis. table 5: comparison of body structures and function based on grades of hip osteoarthritis. table 6: comparison of activity and participation based on grades of hip osteoarthritis. regarding pain, participants with grade iv hoa reported more pain (nrs, median 7 [iqr 6–9], p = 0.02; ohs, median 19 [iqr 8.7–27], p < 0.001) than those with grades i, ii and iii. post hoc analysis revealed for nrs a difference between participants with grades i and iv (p = 0.02); for ohs there was a significant difference between participants with grades ii and iv hoa on the one hand and participants with grades i and iv hoa on the other hand (p < 0.001) (table 5). regarding hip rom and muscle strength, there were no differences between any of the groups (table 5). with respect to activity, a significant statistical difference was also observed. participants’ scores on the 10mwt were 9.9, 10.2, 10.3 and 12.3 s for grades i, ii, iii and iv hoa, respectively. post hoc analysis revealed a significant difference between participants with grades i and iv hoa (p = 0.001) (table 6). a significant difference was observed for qol with the womac, sf-36 pc and sf-36 mc (p < 0.001 for all three outcomes). post hoc analysis revealed for womac a significant difference between participants with grades i and iv hoa (median 30.2 [iqr 12.5–40.6] vs. 57.29 [iqr 46.3–73.9], p < 0.001). post hoc analysis revealed a significant difference between participants with grades i and iv, ii and iv, iii and iv hoa for the sf-36 pc (mean [sd]: 59.4 [13.4], 55.2 [19.2], 46.4 [11.8] and 28.6 [18.2]; p < 0.001 for grades i, ii, iii and iv, respectively) on the one hand and participants with grades i and iv, ii and iv hoa (mean [sd]: 76.1 [12.9], 77.7 [19.9] and 41.5 [22.6]; p < 0.001 for grades i, ii and iv, respectively) on the other hand for the sf-36 mc (table 6). discussion the purpose of this study was to compare the impacts of the aetiology of hoa (primary and secondary) and radiographic status in three domains of the icf model in beninese participants with hoa. there was no significant difference between aetiology on structures and functions, activity and qol in this study. however, the level of cartilage and bone degradation significantly impacted the participants on function, activity and qol. in this study, the average age was 40.5 (17.9) years. this suggests that hoa in the republic of benin affects young adult people. this may be attributed to the role of haemoglobinopathy in the occurrence of aseptic osteonecrosis of the femoral head, which was reported in 20 of the 49 participants. in aseptic osteonecrosis of the femoral head, bone cells or osteocytes are affected by a metabolic disorder and their nutrition modified by a simple local reduction in circulation below the threshold that ensures their survival (lespasio et al. 2019; narayanan et al. 2017). this local reduction in circulation is thought to result from ischemic thrombosis of the artery of the round ligament, the nourishing artery of the femoral head (lespasio et al. 2019; narayanan et al. 2017). this observation was reinforced by oniankitan et al. (2009), who showed that epiphysis and aseptic osteonecrosis of the femoral head seem to constitute the main risk factors for secondary hoa in sub-saharan africa. participants were overweight with an average bmi of 25.6 (sd 7.4) kg/m2. obesity can exert an increased load because of increased body weight; however, there may be differential systemic effects depending on the degree of fat versus lean mass. body mass index may be associated with hoa in our participants. indeed, an increasing load on a hip joint resulting from overweight may affect the appearance of hoa. this is consistent with the observations from heliovaara et al. (1993) and jiang et al. (2011), who reported a positive association between an increased bmi and hoa. participants with secondary hoa were not more severely affected, as no statistically significant differences were found for pain, rom and strength. the young age profile of participants with hoa induced by aseptic osteonecrosis of the femoral head combined with lower bmi compared to participants with primary hoa could explain the lack of differences in scores. future investigations should be envisaged to support our findings. radiographic state had an influence on the pain, activity and qol of participants but not on hip joint rom or muscle strength. participants with grade iv hoa felt more pain. pressure on the subchondral bones, sclerosis, and cysts observed in patients undergoing severe joint deterioration may be the explanation for their greater pain. this finding suggests that pain intensity may be partly related to the degree of hoa, but this assumption is only partially supported by research findings. summers et al.’s (1988) study has shown that the degree of objective disease severity (ods), a set of criteria for the radiographic assessment of disease severity in osteoarthritis (oa), was significantly correlated with a higher level of pain on the mcgill pain questionnaire. dougados et al. (1996) has suggested that there could be a statistically significant correlation between clinical and radiological parameters evaluating hoa. in a survey, arokoski et al. (2004) showed that the pain score was not correlated with the degree of radiologic severity of oa. veenhof et al.’s (2012) systematic review showed conflicting evidence in association between pain and greater joint degradation in hoa. the literature suggests that other factors, such as physical and psychosocial disability (hopman-rock et al. 1996), muscle weakness and ability to cope with pain (van baar et al. 1998) or duration of limitation in normal activities and level of education (thumboo et al. 2002), are associated with the severity of pain in hoa. other studies need to be conducted to support this finding. there was no statistically significant difference according to the grades of hoa in the affected hip joint rom and muscular strength in this study. this observation is consistent with what was reported in the existing literature indicating reduced hip joint rom in a population with hoa (arokoski et al. 2004; rydevik et al. 2010; steultjens et al. 2000). according to arokoski et al. (2004), hip joint rom is a sensitive marker of the radiographic severity of osteoarthritis. he showed that the worse the deterioration of the hip, the lower the rom value of the hip detected in abduction and in internal and external rotations. more research is required to corroborate these results. however, this muscle deficiency observed in the participants may be associated with pain and limitation of activity as described in the literature (rydevik et al. 2010; van baar et al. 1998). in terms of activity, a statistically significant difference in the spontaneous gait speed was observed between participants with grades i and iv hoa. this difference may be attributed to a combination of many factors: (1) a greater bmi (mean 26 [sd 7.4) kg/m2]), more intense pain (nrs: median 7 [iqr 6–9]; ohs 19 [iqr 8.7–27]). it is therefore possible that the level of joint degradation of our participants and its consequences may lead to limitation of activity, resulting in a slow spontaneous gait. this slow spontaneous gait in participants, particularly in those with grade iv hoa, may be one strategy to counterbalance pain and joint load or joint deformities resulting from hoa severity. several authors have reported the effects of hoa on activity but no strong association with radiographic state. for a few authors, there is low evidence for the association between level of physical activity and joint degradation (veenhof et al. 2012), and radiographic oa correlated poorly with physical function (thumboo et al. 2002). constantinou et al. (2017) found that patients with mild to moderate hoa walk slower and the walking distance was significantly shorter during the 6mwt (rydevik et al. 2010). in a population survey, odding et al. (1996) found that restricted rom of several joint actions was associated with the presence of locomotor disability. according to arokoski et al. (2004), people without hoa were significantly better at walking, ascending and descending stairs, and performing a 25-metre walk test. future researches using more efficient tests need to be considered to confirm our observations. the participants with grades i, ii and iii hoa had a better qol than those with grade iv. indeed, participants with grade iv hoa had more pain with a slower spontaneous gait than participants with grades i, ii or iii hoa. in accordance, rydevik et al. (2010) reported that significantly lower health-related qol in hoa patients is attributed to a reduction of hip rom and an increase in joint stiffness. arokoski et al. (2004) observed that the function and scores of womac correlated (p < 0.05) with the degree of radiologically estimated severity of hoa. some previous researches have reported that womac is associated with the radiological severity of hoa (bellamy 2005; stucki et al. 1998). strengths and limitations to our knowledge, this is the first study to explore the influence of aetiology and the radiographic state of hoa on the structures and functions, the activity and the participation of a beninese population with hoa. this is a first step that may help to establish better strategies for the management of this population (policy of identification of patients with hoa, an efficient platform for the best care of patients, etc.). the knowledge of hoa’s impact on the structures and function, activity and participation for a beninese population with hoa may help clinicians to evaluate and develop rehabilitation programmes to improve functioning and reduce disability in this population. however, this research has some limitations: (1) the sample size was small, and the recruitment was done exclusively in only one hospital reference centre; (2) other factors associated with hoa already studied in the literature were not taken into consideration; (3) the influence of environmental factors (home, work environment, social structures, communication and mobility services, laws and societal regulations, etc.) were not discussed in this study. furthermore, the methodological choice to consider only the most painful hip in participants with bilateral hoa may constitute a bias. further researches on the prevalence, association with other factors and treatment are needed and should be conducted on larger sample sizes. this will provide more information on the assessment and management of the population with hoa. conclusion the purpose of this study was to compare the impacts of aetiology and radiographic state in three domains of the icf model in a beninese population with hoa. the results showed that aetiologies did not impact the body structures and function, activity or participation. the severity of oa based on radiographic state showed significant impacts on these variables. higher degradation led to more impacts on different domains of icf. acknowledgements the authors thank all the participants for their participation in the study. competing interests the authors have declared that no competing interests exist. authors’ contributions all authors contributed to the study design. t.f.a., d.d.n.n. and t. l. were responsible for the data collection. t.f.a. and c.d. conducted the data analysis and contributed to the writing of the manuscript. all authors reviewed and accepted the final manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability statement data sharing is available from the corresponding author upon reasonable request. disclaimer the views 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https://doi.org/10.1136/ard.61.11.1017 van baar, m.e., dekker, j., lemmens, j.a., oostendorp, r.a. & bijlsma, j.w., 1998, ‘pain and disability in patients with osteoarthritis of hip or knee: the relationship with articular, kinesiological, and psychological characteristics’, the journal of rheumatology 25(1), 125–133. veenhof, c., huisman, p.a., barten, j.a., takken, t. & pisters, m.f., 2012, ‘factors associated with physical activity in patients with osteoarthritis of the hip or knee: a systematic review’, osteoarthritis and cartilage 20(1), 6–12. https://doi.org/10.1016/j.joca.2011.10.006 vignon, e., conrozier, t., piperno, m., richard, s., carrillon, y. & fantino, o., 1999, ‘radiographic assessment of hip and knee osteoarthritis. recommendations: recommended guidelines’, osteoarthritis and cartilage 7(4), 434–436. https://doi.org/10.1053/joca.1999.0235 walters, s.j., munro, j.f. & brazier, j.e., 2001, ‘using the sf-36 with older adults: a cross-sectional community-based survey’, age and ageing 30(4), 337–343. https://doi.org/10.1093/ageing/30.4.337 who, 2001, international classification of functioning, disability and health: icf, world health organization, geneva. youdas, j.w., madson, t.j. & hollman, j.h., 2010, ‘usefulness of the trendelenburg test for identification of patients with hip joint osteoarthritis’, physiotherapy: theory and practice 26(3), 184–194. https://doi.org/10.3109/09593980902750857 appendix 1: procedures used for the muscle test. hip flexors patient: sitting upright, with the knees bent over the side of the table. hold on to the table to prevent leaning backward to obtain assistance by two-joint hip flexors. fixation: the weight of the trunk may be sufficient to stabilise the patient during this test, but holding on to the table gives added stability. if the trunk is weak, place the patient in the supine position during the test. test: hip flexion with the knee flexed, raising the thigh a few inches from the table. pressure: against the anterior thigh, in the direction of extension. hip extensors patient: prone, with knee flexed 90° or more. (the more the knee is flexed, the less the hip will extend because of restricting tension of the rectus femoris anteriorly.) fixation: posteriorly, the back muscles; laterally, the lateral abdominal muscles; anteriorly, the opposite hip flexors fix the pelvis to the trunk. test: hip extension, with the knee flexed. pressure: against the lower part of the posterior thigh, in the direction of hip flexion. adductors patient: lying on the right side to test the right (and vice versa), with the body in a straight line and the lower extremities and lumbar spine straight. fixation: the examiner holds the upper leg in abduction. the patient should hold on to the table for stability. test: adduction of the underneath extremity upward from the table, without rotation, flexion or extension of the hip or tilting of the pelvis. pressure: against the medial aspect of the distal end of the thigh, in the direction of abduction (i.e. downward toward the table). pressure is applied at a point above the knee to avoid strain of the tibial collateral ligament. abductors patient: side-lying. fixation: the examiner stabilises the pelvis. test: abduction of the hip in a position neutral between flexion and extension and neutral in regard to rotation. pressure: against the leg, in the direction of adduction, and very slight extension. medial rotators patient: sitting on a table, with the knees bent over the side and the subject holding on to the table. fixation: the weight of the trunk stabilises the patient during this test. stabilisation is also given in the form of counterpressure, as described below under ‘pressure’. test: medial rotation of the thigh, with the leg in a position of completion of the outward arc of motion. pressure: with one hand, the examiner applies counterpressure at the medial side of the lower end of the thigh. with the other hand, the examiner applies pressure to the lateral side of the leg, above the ankle, pushing the leg inward in an effort to rotate the thigh laterally. lateral rotators patient: sitting on a table, with the knees bent over the side and the subject holding on to the table. fixation:the weight of the trunk stabilises the patient during this test. stabilisation is also given in the form of counterpressure, as described below under ‘pressure’. test: lateral rotation of the thigh, with the leg in a position of completion of the inward arc of motion. pressure:with one hand, the examiner applies counterpressure at the lateral side of the lower end of the thigh. with the other hand, the examiner applies pressure to the medial side of the leg, above the ankle, pushing the leg outward in an effort to rotate the thigh medially. appendix 2: 10-m walk test diagramme. appendix 3: short-form 36-item health survey questionnaire, physical and mental components. présentation: ce bilan de santé généraliste peut être utilisé en complément de bilans plus spécifiques. critères d’inclusion (les catégories majeures cliniques): toutes catégories de personnes ayant des difficultés de santé. critères d’exclusion (ne pas utiliser pour): aucun. critères de péjoration (diagnostic associé): dépression, difficultés relationnelles. evolution du score: varie selon les items, afin de tester la vigilance du patient. la lecture des résultats fournit une appréciation sémantique. le questionnaire généraliste sf-36 en général, diriez-vous que votre santé est: (cocher ce que vous ressentez) excellente __ très bonne __ bonne __ satisfaisante __ mauvaise __ par comparaison avec il y a un an, que diriez-vous sur votre santé aujourd’hui? bien meilleure qu’il y a un an __ un peu meilleure qu’il y a un an __ a peu près comme il y a un an __ un peu moins bonne qu’il y a un an __ pire qu’il y a un an __ vous pourriez vous livrer aux activités suivantes le même jour. est-ce que votre état de santé vous impose des limites dans ces activités? si oui, dans quelle mesure? (entourez la flèche). activités intenses: courir, soulever des objets lourds, faire du sport. ____↓________________________↓_________________________↓____ oui, très limité oui, plutôt limité pas limité du tout activités modérées:déplacer une table, passer l’aspirateur. ____↓________________________↓__________________________↓____ oui, très limité oui, plutôt limité pas limité du tout soulever et transporter les achats d’alimentation. ____↓________________________↓_________________________↓____ oui, très limité oui, plutôt limité pas limité du tout monter plusieurs étages à la suite. ____↓________________________↓________________________↓____ oui, très limité oui, plutôt limité pas limité du tout monter un seul étage. ____↓________________________↓________________________↓____ oui, très limité oui, plutôt limité pas limité du tout vous agenouiller, vous accroupir ou vous pencher très bas. ____↓________________________↓________________________↓____ oui, très limité oui, plutôt limité pas limité du tout marcher plus d’un kilomètre et demi. ____↓________________________↓________________________↓____ oui, très limité oui, plutôt limité pas limité du tout marcher plus de 500 mètres ____↓________________________↓________________________↓____ oui, très limité oui, plutôt limité pas limité du tout marcher seulement 100 mètres. ____↓________________________↓________________________↓____ oui, très limité oui, plutôt limité pas limité du tout prendre un bain, une douche ou vous habiller. ____↓________________________↓________________________↓____ oui, très limité oui, plutôt limité pas limité du tout au cours des 4 dernières semaines, avez-vous eu l’une des difficultés suivantes au travail ou lors des activités courantes, du fait de votre santé? (réponse: oui ou non à chaque ligne) au cours des 4 dernières semaines, avez-vous eu des difficultés suivantes au travail ou lors des activités courantes parce que vous étiez déprimé ou anxieux? (réponse: oui ou non à chaque ligne). au cours des 4 dernières semaines, dans quelle mesure est-ce que votre état physique ou mental ont perturbé vos relations avec la famille, les amis, les voisins ou d’autres groups? ____↓_______________↓__________________↓___________________↓____ pas du tout très peu assez fortement énormément avez-vous enduré des souffrances physiques au cours des 4 dernières semaines? ____↓_______________↓_________________↓____________________↓____ pas du tout très peu assez fortement énormément au cours des 4 dernières semaines la douleur a-t-elle gêné votre travail ou vos activités usuelles? ____↓_____________↓____________↓_______________↓___________________↓_____ pas du tout un peu modérément assez fortement énormément ces 9 questions concernent ce qui s’est passé au cours de ces dernières 4 semaines. pour chaque question, donnez la réponse qui se rapproche le plus de ce que vous avez ressenti. comment vous sentiez-vous au cours de ces 4 semaines: vous sentiez-vous très enthousiaste? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais étiez-vous très nerveux? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais étiez-vous si triste que rien ne pouvait vous égayer? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais vous sentiez-vous au calme, en paix? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais aviez-vous beaucoup d’énergie? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais étiez-vous triste et maussade? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais aviez-vous l’impression d’être épuisé(e)? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais étiez-vous quelqu’un d’heureux? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais vous êtes-vous senti fatigué(e)? ____↓________________↓____________↓________________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais au cours des 4 dernières semaines, votre état physique ou mental a-t-il gêné vos activités sociales comme des visites aux amis, à la famille, etc.? ____↓________________↓________________↓___________↓_______________↓___ tout le temps très souvent parfois peu souvent jamais ces affirmations sont-elles vraies ou fausses dans votre cas? il me semble que je tombe malade plus facilement que d’autres. ______↓____________↓_______________↓___________________↓_________↓_____ tout à fait vrai assez vrai ne sais pas plutôt faux faux ma santé est aussi bonne que celle des gens que je connais. ______↓____________↓_______________↓___________________↓_________↓_____ tout à fait vrai assez vrai ne sais pas plutôt faux faux je m’attends à ce que mon état de santé s’aggrave. ______↓____________↓_______________↓___________________↓_________↓_____ tout à fait vrai assez vrai ne sais pas plutôt faux faux mon état de santé est excellent. ______↓____________↓_______________↓___________________↓_________↓_____ tout à fait vrai assez vrai ne sais pas plutôt faux faux source: wade, j.e. & sherbourne, c.d., 1992, ‘the mos 36-item short-form health survey (sf-36)’, medical care 30, 473–483. appendix 4: womac: index de sévérité symptomatique de l’arthrose des membres inférieurs. le womac est l’index validé dans l’évaluation d’une arthrose des membres inférieurs. il existe 2 systèmes de cotation des réponses aux questions: soit l’échelle de likert avec 5 réponses possibles (nulle = 0 ; minime = 1 ; modérée = 2 ; sévère = 3 ; extrême = 4), soit une échelle visuelle analogique de 100 mm. il est possible de calculer les scores dans chaque domaine ou pour l’ensemble du womac womac domaine douleur: quelle est l’importance de la douleur? (1) lorsque vous marchez sur une surface plane? (2) lorsque vous montez ou descendez les escaliers? (3) la nuit, lorsque vous êtes au lit? (4) lorsque vous vous levez d’une chaise ou vous asseyez? (5) lorsque vous vous tenez debout? womac domaine raideur (1) quelle est l’importance de la raideur de votre articulation lorsque vous vous levez le matin? (2) quelle est l’importance de la raideur de votre articulation lorsque vous bougez après vous être assis, couché ou reposé durant la journée? womac domaine fonction: quelle est l’importance de la difficulté que vous éprouvez à: (1) descendre les escaliers? (2) monter les escaliers? (3) vous relever de la position assise? (4) vous tenir debout? (5) vous pencher en avant? (6) marcher en terrain plat? (7) entrer et sortir d’une voiture? (8) faire vos courses? (9) enfiler collants ou chaussettes? (10) sortir du lit? (11) enlever vos collants ou vos chaussettes? (12) vous étendre sur le lit? (13) entrer ou sortir d’une baignoire? (14) vous asseoir? (15) vous asseoir et vous relever des toilettes? (16) faire le ménage ‘à fond’ de votre domicile? (17) faire l’entretien quotidien de votre domicile? source: bellamy, n., buchanan, w.w., goldsmith, c.h., campbell, j. & stit, l.w.j., 1995, ‘validation of womac: a health status instrument for measuring clinically important patient relevant outcomes to antirheumatic drug therapy in patients with osteoarthritis of the hip or knee’, journal of rheumatology 15(1), 1833–1840. appendix 5: consent form. nom ---------------------------prenom ----------------------date naissance --------------date ---------------evaluation de votre probleme de sante sur votre vie consentement éclairé participant je déclare que j’ai été informé sur la nature de l’étude, son but, et ce que l’on attend de moi. j’ai pris connaissance du document d’information. j’ai eu le temps pour y réfléchir et en parler avec une personne de mon choix comme mon médecin généraliste ou un membre de ma famille. j’ai eu l’occasion de poser toutes les questions qui me sont venues à l’esprit et j’ai obtenu une réponse satisfaisante à mes questions. j’ai compris que ma participation à cette étude est volontaire et que les données me concernant seront récoltées pendant ma participation à cette étude et que le kinésithérapeute investigateur et le promoteur de l’étude se portent garant de la confidentialité de ces données. je consens au traitement de mes données personnelles selon les modalités décrites. je donne également mon accord au transfert et au traitement de ces données dans d’autres pays que le bénin. j’accepte/n’accepte pas (biffer la mention inutile) que les données de recherche récoltées pour les objectifs de la présente étude puissent être traitées ultérieurement pour autant que ce traitement soit limité au contexte de la présente étude pour une meilleure connaissance de la maladie et de son traitement. j’accepte/n’accepte pas (biffer la mention inutile) que mon médecin généraliste ou d’autres médecins spécialistes en charge de ma santé soient informés de ma participation à cette étude. j’ai reçu une copie de l’information au participant et du consentement éclairé. nom, prénom, date et signature du volontaire. ____________________________________ représentant légal je déclare que j’ai été informé qu’on me demande de prendre une décision de participation à l’étude de la personne que je représente au mieux de ses intérêts et en tenant compte de sa probable volonté. mon consentement s’applique à tous les items repris dans le consentement du participant. j’ai reçu une copie de l’information au participant et du consentement éclairé. nom, prénom et lien de parenté avec la personne représentée: ____________________________________ date et signature du représentant légal. témoin/interprète j’ai été présent durant l’entièreté du processus d’information au patient et je confirme que l’information sur les objectifs et procédures de l’étude a été fournie de manière adéquate, que le participant (ou son représentant légal) a apparemment compris l’étude et que le consentement à participer à l’étude a été donné librement. nom, prénom et qualification du témoin/interprète: ____________________________________ date et signature du témoin/interprète. kinésithérapeute investigateur je soussigné, -----------------------------------------------------------------------kinésithérapeute investigateur confirme avoir fourni oralement les informations nécessaires sur l’étude et avoir fourni un exemplaire du document d’information au participant. je confirme qu’aucune pression n’a été exercée pour que le patient accepte de participer à l’étude et que je suis prêt à répondre à toutes les questions supplémentaires, le cas échéant. je confirme travailler en accord avec les principes éthiques énoncés dans la dernière version de la « déclaration d’helsinki ». nom, prénom, date et signature nom, prénom, date et signature du représentant de l’investigateur du kiné investigateur appendix 6: hip range of motion based on grade of hip osteoarthritis in relation to norms abstract introduction literature review research method and design results discussion conclusion acknowledgements references about the author(s) warren p. charles department of human resource management, faculty of business and management sciences, cape peninsula university of technology, cape town, south africa liiza gie department of human resource management, faculty of business and management sciences, cape peninsula university of technology, cape town, south africa rhodrick n. musakuro department of human resource management, faculty of business and management sciences, cape peninsula university of technology, cape town, south africa citation charles, w.p., gie, l. & musakuro, r.n., 2023, ‘barriers to the employability of people with disabilities in the south african public service’, african journal of disability 12(0), a1178. https://doi.org/10.4102/ajod.v12i0.1178 original research barriers to the employability of people with disabilities in the south african public service warren p. charles, liiza gie, rhodrick n. musakuro received: 29 nov. 2022; accepted: 25 may 2023; published: 17 july 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: south african public sector efforts to employ people with disabilities (pwds) in the post-apartheid have been less successful, resulting in a poor transformation record during the past 27 years (1994-2021) due to the failure to integrate pwds into mainstream employment in government departments. objective: the objective of this article is to identify and highlight some of the barriers to the employability of pwds in the south african public service. method: the research was framed as a case study within the transformative research paradigm. a typical department in the western cape provincial government was selected for the study. in-depth interviews were conducted with selected top managers within the western cape provincial government. convenience sampling technique of the purposive sampling method was adopted to select targeted respondents (n = 10). thematic analysis was employed to condense the data collected into a small number of significant themes. atlas.ti version 7 was also used to enhance the analysis. results: the study found, among others, that there are conceptual, infrastructural, managerial and organisational factors affecting the employability of pwds in mainstream public service. conclusion: the study concludes that barriers to the socio-economic progression of pwds, including infrastructural and psychosocial factors, continue to prevail and cause the socio-economic marginalisation of pwds. contribution: the study contributes towards efforts aimed at the inclusion of pwds in the workplace by offering both internal and society-wide actions. internally, successful inclusion of pwds involves eliminating barriers, removing bureaucracy, initiating management development for disability matters, introducing appropriate talent development measures, and implementing collaborative management of pwds. external or society-wide measures include campaigns to demystify disability and change attitudes, engage society structures, and improve societal knowledge of disability. keywords: disability; barriers; employment; provincial government; labour market; public service. introduction it is believed that people with disabilities (pwds) have not been successfully integrated within mainstream employment in government departments in south africa (ned & lorenzo 2016), resulting in a poor transformation record over the past 27 years (1994–2021). essentially, pwds still face inhibiting barriers that exclude them from employment (shakespeare et al. 2019; vornholt et al. 2018). this study explored the barriers to the employability of pwds in the south african public service. this study also took note of the efforts by the south african government to attain inclusiveness of pwds in the labour market. as reported by hart, bohler-muller and hagg (2018), pwds as a share of the south african workforce from 2002 to 2016 had never reached the 2% level. earlier reports from the public service commission (psc) (2008) indicated a failure on the part of the public service to meet disability targets. consequently, pwds have remained in a vicious circle of exclusion and poverty over the years (shakespeare et al. 2019:1). as such, there is a need for studies that explore the barriers to the employability of pwds. there have been indications that employers lack the necessary strategies to effectively integrate pwds within the workplace and there is a lack of supportive infrastructure for the integration of pwds in public sector workplaces. in their study, gida and ortlepp (2007) found that a lack of accessible facilities and public transport prohibited south africa’s top 100 organisations from absorbing pwds in their workplaces. as the largest employer in south africa, the south african public service led the need for accommodating pwds in employment, by setting for itself a 2% target for disability equity. in the light of this, oskouie et al. (2017) suggested that there has been a significant need for more theoretical work to expand context-specific knowledge on disability stigma and discrimination. moreover, as observed in hewko et al.’s (2018) study of stigma and discrimination, there is a greater need for studies that investigate the employability of pwds in organisational settings as opposed to society contexts. considering this, the purpose of this study was to identify and highlight barriers to the employability of pwds in the south african public service. to achieve this, the research question for the study was: what are the barriers preventing the employment of pwds in the south african public service and what factors seem to be contributing to the barriers? literature review a literature exploration of the notion of disability in various academic publications shows that there has been a shift in the conceptualisation of the meaning of disability. this shift has been linked to experts such as oliver (1990) of the social model. the social model views disability as a social construct rather than a medical condition. the medical model, on the contrary regards disability as a disease or sickness (sisti 2014). although the social model and medical model provide preliminary and valuable insights into understanding the term ‘disability’, the world health organization (who) (2011) has recommended that there should be a balance in approach between the medical model and the social model when defining pwds. striking this balance is therefore essential in order to ensure that pwds are provided with the necessary support and resources they need, thereby accommodating them more effectively in the workplace. according to sing (2012), there is no ‘country-specific’ definition of the term ‘disability’ in south africa, and this has an implication on how pwds can be identified in the workplace. moreover, the lack of clarity may have serious implications for employers, as it limits their ability to provide the necessary support and resources to staff with disabilities, thereby limiting their potential to succeed. however, sing (2012) goes on to cite a broad definition of disability approved by the south african government: [t]he loss or elimination of opportunities to take part in the life of the community equitably with others that is encountered by persons having physical, sensory, psychological, developmental, learning, neurological or other impairments. (p. 164) even though this definition has various characterisations of disabilities, it does not consider the fact that many pwds are not able to take part in the life of the community because of poor accessibility. this creates a fragmented understanding of disability and has the potential to result in a lack of consensus on what constitutes a disability and how it should be defined. moreover, this in turn has implications for how disability is addressed in policy and practice. considering that there are different models (social and medical) for conceptualising disability, the literature shows that one of the reasons why researchers have differing perspectives on the meaning of disability is that there are various categories and forms of disability. to this end, the services sector education and training authority toolkit (2006) provides categories of disabilities as shown in figure 1. these categories are physical disability, mental disability, hearing disability and visual disability. each category has its own unique set of challenges and needs that must be addressed in order to ensure that pwds have access to the same opportunities in the workplace as those without disabilities. in the light of these categories and for the purposes of this study, disability is simply defined, in agreement with cleaver and unell (2011) as: ‘any form of physical, mental, hearing and visual disability condition that appears to impose limitations and significantly impairs an individual’s probability of entering into and advancing in employment’. this definition of disability is in line with the international labour organization’s (ilo) convention on the rights of persons with disabilities, which defines disability as a long-term physical, mental, intellectual or sensory impairment (stein et al. 2007). also, this definition is consistent with grobler et al. (2006) who define disability as a physical or mental impairment that substantially limits life activities. thus, disability is seen to have a direct negative impact on an individual’s ability to secure and build a successful career in the workplace. figure 1: categories of disability. one aspect that makes the conceptualisation of disability problematic is the difficulty of distinguishing between normal and abnormal situations characterising being able and being ‘not able’. for instance, it is not always possible to tell normal from abnormal mental conditions (connellan 2021). another challenge rests on the changing nature of conditions. as bonaccio et al. (2020:1) argues, some disabilities and impairments are invisible, and employers often underestimate the number of pwds who are qualified for a given position because of the intermittent nature of their impairments. this can lead to an underestimation of the number of pwds who are actually capable of excelling in the position, as well as an undervaluing of the skills that those individuals can bring to the job. even though these challenges exist, disability remains a reality everyone must deal with. this means that legislation must be flexible and adaptive; it should be able to accommodate changes in disability conditions (sing 2012). it is also imperative that employers create an accessible and inclusive work environment for pwds. disability must be better understood and accepted by society, so that pwds can live and work without stigma or discrimination (oliver 1990). after the 1994 democratic transition, the new government spelt out a need for transformation to ensure the participation of all in every dimension of human existence (sing 2012). these calls had greater implications for all sectors for economic participation, reduction of poverty, social mobility and the advancement of employment equity in the labour market. according to who (2011), the participation of pwds in the labour market tends to be lower than that of pwds because of factors that affect both the supply side and the demand side of the labour market. the supply side of pwds in the labour market considers the possession of skills, knowledge, competences and behavioural attitudes that are required in the labour market, whereas the demand side considers the availability of employers who are capable of absorbing pwds in employment as well as the provision of a favourable environment for such employment. developing countries such as south africa often suffer from high unemployment and other labour absorption challenges that tend to favour the employment of some groups at the expense of others (mitra 2010). this, in turn, can create a sense of inequality and unfairness among different groups of people in the labour market. moreover, disability-based stigma and discrimination are global problems (parker & aggleton 2003). in other words, most social evils (such as poverty, unemployment, inequalities, violence, and abuse) are likely to have a detrimental effect on the staff with disabilities. in this way, it is evident that the people with disabilities are particularly vulnerable to the effects of social adversity. furthermore, the paradigm shifts from medical theories to socially rooted conceptions of disability that focuses on the effective manipulation of social elements in order to manage, control and disentangle the complicating elements of disability have become prevalent. the integration of pwds into mainstream employment depends on removing or eliminating specific barriers in the labour market, some of which may be entirely perceptual. the social model has been significant in offering directions for a perceptual shift. gida and ortlepp (2007) conducted interviews to investigate the human resource implications of employing pwds. in their study, challenges to the employment of pwds were classified into three groups, namely environmental, attitudinal and resources. a significant number of respondents mentioned that the attitudinal barrier of the stigma surrounding pwds is a crucial challenge to their employment. it should be noticed that attitudinal factors are often rooted in the model of disability. other attitudinal factors included ignorance of issues relating to disability on the part of management. another major challenge concerns finding suitable pwds with the required skills (gida & ortlepp 2007). both are contributors to the cycle of poverty and inequality affecting pwds. the lack of adequate access to educational opportunities among pwds manifests itself in their failure to secure suitable jobs. efforts to disrupt this cycle must start with providing educational and training opportunities and be followed by interventions in the labour market. another major challenge observed was the non-disclosure of disability by persons with disabilities themselves. this demonstrates their acceptance of societal labelling and adoption of an isolation strategy to deal with society’s negative perceptions. these tendencies reinforce the urgent need for societal reform to foster holistic improvement in the status of persons with disabilities and allow for their integration into mainstream employment. another important and similar compilation of the factors contributing to high unemployment rates among pwds is provided in the white paper on disability (south africa white paper 1997). the who (2011) observes that pwds worldwide can undertake respected professions, engage in entrepreneurship, be self-employed or work in various responsibilities in both government and private enterprise. the paragraphs below present an analysis of significant barriers to the employment of pwds. the formulation of any framework for the employment of pwds must begin with a proper comprehension of the barriers to this and how they interact with other factors to affect the exclusion of pwds. inclusivity as a concept remains fundamental to south africa as a democracy. the white paper on disability (south africa white paper 1997) identifies the factors contributing to high unemployment among pwds, which include: (1) low skills level, (2) inadequate education, (3) discrimination in workplaces, (4) unsupportive labour legislation, (5) poor enabling mechanisms, (6) inaccessible workplaces, (7) a lack of rehabilitation and training and (8) general high unemployment levels and inadequate access to information. the white paper on disability (1997) notes that pwds are often employed in the departments of welfare and labour sheltered and/or protective workshops, private welfare organisations or by pwds themselves. these jobs do not provide the pwds with competitive economic power to support themselves and their families. disability-based discrimination and stigma are worldwide issues (parker & aggleton 2007). there has been a paradigm shift from medical to social conceptions of disability that focuses on effectively manipulating social elements to manage, control and disentangle the complicating elements of disability (sisti 2014). yet despite widespread campaigns, stigma and discrimination against pwds remain strong and prevalent (koodibetse 2015). goffman is widely cited as the originator of stigma theory. stigma is ‘a mark of disgrace associated with a particular circumstance, quality or person’ (dos santos et al. 2014). this definition mirrors that of skinner and mfecane (2004), who characterised stigma as ‘a deeply discrediting attribute that reduces an individual to someone who is in some way tainted and can therefore be denigrated’. a significant element of stigma is the ‘loss of social identity’ associated with it (emlet 2007). stigma and discrimination are socially embedded markers of difference among people in particular social settings. grinker (2021) observes that the term ‘stigma’ originated in ancient greece, where the skin of criminals was marked so that they could be recognised and condemned by communities. the term has come to be associated with uncomfortable labelling and negative perceptions, like those associated with contracting human immunodeficiency virus (hiv) and/or aquired immunodeficiency syndrome (aids). link and phelan, cited in grinker (2021), conceptualise stigma as ‘the interaction of labelling, stereotyping, separation, and discrimination by community members whose social, political, and/or economic power places them in a position perceived as superior’. skinner and mfecane (2004) suggest that ‘stigma and discrimination are political tools which the powerful use to protect their position by denigrating the weak and burdened groups’. although this view holds significant appeal, it lacks an in-depth analysis of the trade-offs between power, politics, psychological variables and stigma. discrimination remains one of the significant barriers to the integration of pwds in mainstream employment. the literature attributes discrimination against pwds to negative attitudes and a lack of knowledge or awareness of the concept of disability (maja et al. 2011), arguing that discrimination and its rationales are socially constructed phenomena (gida & ortlepp 2007). according to maja et al. (2011), people without disabilities often see pwds as inferior, demonstrating the necessity of adopting a social model in handling their employment. the social model of disability holds that society disables and reifies disability, that is, if society did not take cognisance of disability, there would be no disability at all. maja et al. (2011) argue that the physical environment, comprising equipment, infrastructure and machinery, limits the employment of pwds. appropriate physical infrastructure is required to enable the proper employment of pwds. morwane, dada & bornman (2021) conducted a literature review of barriers to the employment of pwds, using the levels of barriers set out in the international classification of functioning, disability and health (icf) framework. this framework envisages disability in terms of bodily functions and structure, limitations in performing activities, inability to participate, and context-related environmental or personal factors. this study highlighted the significant role that the environment plays in strengthening the notion of disability and the poor employability of pwds. similarly, gida and ortlepp (2007) found that physical environment elements such as parking facilities, transport facilities, and sitting and rest areas for pwds were challenging. maja et al.’s (2011) literature review on the employability of pwds found widespread evidence that in industrial settings, many employers have failed to employ pwds because of inaccessible buildings and infrastructure. therefore, the conduciveness of the physical environment significantly affects the employability of pwds. adapting to the environment could be considered costly or difficult by employers and requires commitment. for instance, technological developments within the fourth industrial revolution (4ir) have made possible assistive devices and technologies capable of creating an enabling environment for the employment of pwds. mji and edusei’s (2019) presentation at the fifth african network for evidence-to-action in disability conference highlighted how african countries are trailing behind in adopting assistive technologies (ats) like artificial intelligence and robotics that can improve the environment for the employment of pwds. convincing evidence exists of the critical role of ats in enabling inclusive education. mji and edusei (2019) list some of the focal areas for adopting ats to improve the integration of pwds in mainstream employment, chief among them being government support in providing assistive devices and promulgating relevant legislation. in south africa, barriers to integrating pwds into mainstream employment seem closely linked to developmental problems. research suggests that stigma and discrimination remain significant obstacles to the employment of pwds in african countries in comparison with nations of the developed world. studies on the employment of pwds have often highlighted the impact of stigma and discrimination. stigma and discrimination often result in pwds avoiding employment or deciding to leave their jobs. according to oskouie et al. (2017), there is a significant need for more context-specific knowledge about disability stigma and discrimination, specifically in organisational settings as opposed to broader societal contexts. studies that focus on stigma in the workplace are essential for increasing the inclusion of pwds in mainstream employment. marumoagae (2012) observes that employers face the challenge of ensuring that people with disability access the labour market in response to the south african government’s attempts to improve the levels and conditions of employment of pwds. policy and legislation have been developed in south africa to address challenges faced by pwds in the labour force; however, the practical implementation is challenging. a study of top 100 companies in south africa by gida and ortlepp (2007) showed that the companies’ human resource management departments lacked a strategy for employing pwds. marumoagae (2012) seems to share this view, observing that not much has been done to deal with the actual problems that pwds encounter in the labour market with a low absorption rate of pwds in the labour market (statistics south africa 2014). south africa has made strides at the national policy level but now faces an implementation problem. it is unclear whether the failure to implement policy is because of ignorance of policy or because these are not fit for the south african context. additional research is required to determine the reasons for their slow implementation. it is imperative to emphasise, however, that the foundations of the human rights approach can be found in the republic of south africa’s constitution (constitution of the republic of south africa 1996). this is further supported by international agreements such as the united nations convention on the rights of persons with disabilities (united nations 2006). this means that the constitution of south africa created a framework for protecting the rights of all people, regardless of their disability or background. it also sets a standard for other countries to aspire to in the protection of human rights, and these standards have been further strengthened by international agreements. this is consistent with a secular moral disability model, in which the inclusion of pwds is based on the general acceptance that it is a good thing to do. the south african public service was set up under the provisions of section 197(1) of the constitution of the republic of south africa (act 108 of 1996) (south africa. constitution of the republic of south africa, 1996) (hereafter referred to as the constitution). the promotion of the rights of pwds was an important aspect of service delivery assigned to the new public sector by the constitution. as argued by fagin (2011:2), the post-1996 public sector had a new mandate to redress the shortcomings regarding justice, equality and inclusiveness associated with the apartheid government. apartheid policies significantly prejudiced pwds from the black population who lived in remote or marginalised areas (morwane et al. 2021:2). morwane et al. (2021:2) observe that this situation is not uncommon in african countries. in the south african case, the new public service was tasked with implementing wide-ranging changes to address the injustices of the apartheid era (south africa. department of social development 2016). the public service comprises more than 1 million people, making it the largest employer in south africa (sing 2012:161). the public service falls under the administration of the department of public service and administration (dpsa) and is led by a responsible minister. in its 2017/2018 annual report, dpsa stated that the public service of south africa is made up of 44 national departments and 144 provincial departments. to promote effectiveness, accountability and achievement of quality service delivery, the south african constitution established an independent and impartial psc to report to parliament about public service operations. research method and design the study was framed within the need to achieve social justice and inclusiveness for pwds. the ontological assumptions of the transformative research paradigm underpinned the philosophical approach of the study. mertens (2016) asserts that the transformative research paradigm seeks to advance human rights and attain mainstreaming of disadvantaged groups such as pwds and women. this paradigm is thus concerned with transforming societies at both personal and community levels (creswell & creswell 2018). a fundamental concern for this study was to advance the emancipation of pwds, who are a marginalised and disadvantaged group as defined by south africa’s employment equity act 66. to address the barriers for the employability of pwds from the perspective of the transformative paradigm, there was a need to explore in detail a particular case that allows understanding of contextual issues associated with any barriers observed. consequently, a single case study research design was adopted to ensure in-depth appreciation of particular issues. the case study is considered to be an inquiry into a single event or a set of events of interest with an effort to understand it adequately (zucker 2009). the single case study research design was chosen because of its potential to provide a detailed, in-depth understanding of a particular phenomenon in its natural context (yin 2008). to be precise, a single case study design was chosen to allow for a deep exploration of the complexities of the case, the employment of pwds in a single provincial government department in the western cape. as noticed by creswell and creswell (2018), case studies are unique in that they allow for detailed analysis cost effectively. the case study as a qualitative approach produces contextually rich data for identifying and comprehending barriers to the pwds’ employment in the south african public service (christensen, johnson & turner 2015). interviews as a key data collection strategy among qualitative studies were used. face-to-face interviews were conducted to collect data as part of the qualitative research approach employed in this study. the main reason for employing face-to-face interviews for this study was to obtain comprehensive, in-depth and thorough data about a phenomenon (hughes 2002). in terms of data collection procedures, the researchers approached the office of the premier to explain the study and indicate the main questions to be answered during the interviews. the official suggested that the deputy directors and their assistants were the most appropriate respondents to be approached. at the end of the discussion, a memorandum of understanding (mou) was signed and entered into with the provincial department. after signing the mou, the researchers were taken on a tour of the department and introduced to staff members. the official from the office of the premier then sent out an email to all deputy directors and assistant directors, explaining the study and inviting them to participate. the full number of deputy directors and assistants in the department was not revealed, but 10 responded and indicated their willingness to participate in the study. to avoid work disruptions, the interviews were scheduled in a well-spaced manner over a 3-month period. the average time for an interview was 90 min. consistent with interviews, an in-depth interview guide that was largely open-ended was used to collect data. the open-ended interview guide was developed based on the research questions and the theoretical findings reached during the literature review. after the structured interview guide was designed, it was essential to ensure that it attended to the research objectives, it followed appropriate ethical guidelines and the questions were appropriate in terms of clarity, specificity, and relevance. to this end, a panel of experts in disability studies was assembled to scrutinise the interview guide. five experts made themselves available to ‘validate’ the interview guide. the experts had all published in various accredited journals and were known for their strength in conducting academic studies. the experts comprised three renowned academics, one member of the disability community and one senior employee in the south african public service. the experts sat three times to validate the research instrument at the beginning of the study. at the first sitting of the panel to discuss and validate the questions, some questions were eliminated, and others were proposed for inclusion. the panel of experts made recommendations for a review of the interview guide at the end of the first session. the research instrument was then amended to take into account the suggestions made. the instrument was then re-submitted for another review. the experts convened again and took note of the changes made. minor corrections and suggestions were conveyed to the researcher via a report. after these matters had been attended to, the instrument was submitted for final review and pronounced ‘valid’, trustworthy and in line with the study’s problem. to confirm that the interview instrument met the purposes of the study and could solicit the required data, an arrangement was made for it to be pretested. the researcher established contact with a provincial department other than the targeted one and requested an interview with a deputy director or assistant director. it was explained that the purpose was to ensure the instrument’s suitability for application to another provincial department. the deputy director who agreed to participate in this pretesting process was informed that the aim was to identify inappropriate or poorly constructed questions. the aims and objectives of the study were explained so that the bigger picture, perspective and orientation could be seen. this pretesting process confirmed that the research instrument was appropriate as all the items in the guide were satisfactorily understood and answered. after this process, the interview guide was considered appropriate, valid and ready for implementation. the study population consisted of members of a selected western cape provincial government department. the department was selected according to the way the study was conceived; in that, it was considered a typical provincial government department concerning the integration of pwds in mainstream employment. the convenience sampling technique of the purposive sampling method was used to select respondents. purposively, deputy directors and their assistants were selected to participate in this study because they’re the key employees responsible for the interpretation of the disability policy and the preparation of recruitment strategies at the western cape provincial government department. it was clear that, given its transformative orientation, the deputy directors and their assistants would meet the purpose of the study. ritchie, lewis and el am (2003) note that transformative or critical studies employ ‘critical case’ sampling based on the purposive selection of participants who are likely to be essential to their purposes. data analysis thematic analysis was used to condense the data collected into a small number of significant themes. atlas.ti version 7 was also used to enhance the analysis by building network diagrams that showed important data patterns and linkages. after that, the study employed inductive themes, which are rich in context and more detailed, allowing discussions to be determined by data (braun & clarke 2006). the thematic process that was unfolded in this study respected the constant comparison techniques associated with grounded theory, during which researchers juxtapose emerging trends with ideas from previous studies (glaser & strauss 1967). ethical considerations given the nature of the study, ethical considerations related to anonymity, confidentiality of data, informed consent and respect of participants were adhered to. results biographical details of respondents table 2 presents a demographic profile of the 10 respondents who took part in the study. seven out of the 10 participants were deputy directors in the provincial government (pg) department selected for analysis in this study, while the remaining three were assistant directors. the respondents were, therefore, managers familiar with the strategic thrust of the department and fully aware of disability management issues within the department. the average length of experience of the respondents as public service officers was 14 years, which underlines their seniority and capacity to offer meaningful and relevant information. with six of the respondents being female and four respondents being male, there was a reasonable gender balance among them. in summary, these characteristics rendered the respondents suitably qualified to provide in-depth data concerning the barriers to the employability of pwds in the south african public service. responses to interview question 2: what do you think are the barriers to integrate people with disabilities into employment within various departments? considering the second interview question, the data were first considered relative to the literature before it was matched with relevant codes deduced from the literature. these codes mainly emanated from the who (2011) guidelines on barriers to integrating pwds into mainstream employment, which classified barriers as psychosocial and cultural, infrastructural, managerial and attributable to the nature of the organisation. the barriers identified in this study were extracted from the responses shown in table 2. the results shown in table 1 were subjected to analysis facilitated by atlas.ti to reveal relationships among themes, categories and sub-categories. data display techniques are essential in analysis as they assist in depicting important links, patterns and relationships within the data (verdinelli & scagnoli 2013). table 1: demographic profile of the respondents. table 2: thematic codes for interview question 2. as illustrated in figure 2, this study found that respondents identified managerial, cultural, psychosocial, infrastructural and organisational barriers as critical variables affecting the possible integration of pwds into mainstream employment within the provincial government. in the case of managerial barriers, the findings support those of bonaccio et al. (2020) that managers often found themselves in a dilemma as a result of the ineffectuality in the performance of their key management tasks regarding pwds. some respondents were also of the view that there was a ‘lack of will’ to achieve goals relating to the integration of pwds in mainstream employment. respondents also mentioned that it was difficult to simply accept working with pwds, thereby exhibiting negative attitudes towards the employment of pwds. this seems to account for the low absorption of pwds into mainstream employment. figure 2: barriers to the integration of people with disabilities. responses to interview question 3: what challenges do people with disabilities face in finding employment within the western cape provincial government? inductive thematic analysis of the challenges faced by pwds in finding employment within the pg department generated themes that were earlier established under the heading of barriers to the employment of pwds (table 3). in other words, organisational, conceptual, integration approach and infrastructural challenges emerged from the thematic analysis, as shown in table 4. there were, however, some respondents who felt that pwds did not face any challenges in acquiring employment within the pg department. their views seemed to resonate with the study’s findings of previous studies that reported that there is a degree of ignorance of problems and issues affecting pwds in the labour market (gida & ortlepp 2007). table 3: barriers to the employment of people with disabilities. table 4: thematic template for interview question 3. the responses provided in table 4 were then configured on atlas.ti to review relationships and categories that addressed the research question. the network diagram thus generated is presented in figure 3. figure 3: network diagram of responses to the challenges faced by people with disabilities in finding employment within the organisation. as portrayed in figure 3, there are managerial, organisational and conceptual challenges inhibiting the integration of pwds into mainstream employment. in addition, some respondents expressed the view that limited access to information remains another barrier faced by pwds. some respondents felt that pwds did not face any challenges. these findings are further discussed below. access to information this can be linked to managerial inadequacies. respondents highlighted the use of the wrong job advertisement platforms that were inaccessible to pwds or posed challenges to their effective recruitment. the main job advertisements used by government departments are newspapers and their own internet websites. a study by maja et al. (2011) reveal that pwds face significant marginalisation in the education system and therefore lack the skills and experience to compete in the mainstream job recruitment market. they may therefore require other recruitment methods and platforms. absence of challenges as observed in earlier discussions, some respondents seemed completely oblivious or ignorant of the challenges faced by pwds. they argued that pwds receive preferential treatment, are supported by affirmative action initiatives and do not face any challenges in recruitment. some respondents believed that the challenges they faced were no different from those faced by able-bodied persons and were therefore unable to pinpoint anything specific. responses to interview question 5: what in your opinion is the main reason why people with disabilities might find employment difficult within the wcpg? question 5 was a factual question and yielded the factual responses set out in table 5. opinions on the barriers to the employment of pwds were wide-ranging but significantly resembled those discussed in the literature review chapters. some respondents also felt that the attitudes, thoughts and inferiority complexes inherent among pwds prevent them from getting absorbed into mainstream employment. reasons for pwds’ failure to find employment within the provincial government department can be identified from the perspective of the pwds themselves as well as from the perspective of other people within the pg. as suggested by respondent 5, pwds feel inferior and lack the confidence to join mainstream employment, while employees hold negative perceptions of the pwds already employed. this is shown in table 5. table 5: the main reasons for the failure to integrate people with disabilities into mainstream employment within the pg department. the other main reasons provided in table 5 can be seen within the psychosocial, infrastructural and organisational framework established for earlier questions. the responses, however, provide another dimension that requires consideration: the attitudes of pwds themselves, who tend to suffer from certain complexes that prevent them from taking up challenges that characterise the labour market. respondent 10 also raised the issue of electricity load shedding in south africa as potentially impeding the mobility of pwds. this is because electricity load shedding can cause elevators and other disability-related equipment to stop working. this in turn can lead to mobility limitations for pwds, as they are unable to access certain areas that require the use of elevators. there were also responses relating to the lack of knowledge about disability among employees already employed in the organisation. this lack of knowledge about disability conceptually limits the ease with which pwds can be accepted in the workplace. discussion the lack of integration of pwds into mainstream employment was found to be the result of conceptual, infrastructural, managerial and organisational issues. the themes isolated in the data analysis demonstrated that there were strong organisational and managerial challenges. this endorses the findings of sing (2012), who argues that government departments have not succeeded in fully accommodating pwds in their employment and structural systems. when this is considered in the light of the marginalisation and exclusion of pwds during the apartheid era, it can be concluded that there has been deep-rooted failure in the transformation of south african society (mahlangu 2009). in the earlier literature review, it was shown that apartheid systems were characterised by the exclusion of certain categories of people from mainstream participation in socio-economic activities. the apartheid administration emphasised the principle of the separation of races, which significantly affected pwds from the black population living in remote or marginalised areas (morwane et al. 2021). in concert with the findings of previous research, this study has identified several barriers inhibiting the integration of pwds, including the absence of a broad collaborative strategy for disability management and a centralised approach to disability management. the failure to address the situation of pwds seems to point to profound structural inadequacies in the public service (sing 2012). these structural dimensions include a hierarchical structure in government institutions and a reliance on bureaucracy and directive-based management. the study found that issues concerning pwds are sensitive and evoke a variety of emotions and attitudes. such issues nevertheless need to be addressed to remediate past failures and promote the transformation agenda in south africa. it appears that while there has been some progress in the implementation of employment equity, especially in terms of the accommodation of all racial groups in mainstream employment, pwds seem to be lagging behind. further research into the extent to which compounded marginalisation is still prevalent in south african society may be necessary, for instance, by investigating how the situation of pwds relates to factors of gender, race and economic status. the discoveries articulated in this study include: (1) as a result of the failure to integrate pwds into mainstream employment, they continue to suffer from socio-economic marginalisation despite the end of apartheid; (2) because of the failure to integrate pwds into mainstream employment, the discrimination and segregation of pwds have prevailed relative to other previously disadvantaged groups; and (3) because of the failure to integrate pwds into mainstream employment, the present integration strategy must be ineffectual. the public service is expected to take the lead in implementing government programmes and initiatives. its failure to address an issue of national concern such as this means that the issue remains problematic in the private sector. if government departments can take the lead by employing the right strategy, private-sector employers are highly likely to follow suit. reasons such as lack of access, lack of information, discrimination and general lack of trust in being accommodated in the workplace have been identified as factors that continue to reduce the participation of pwds in mainstream employment. reasons for the failure to integrate pwds into mainstream employment were found to be both internal and external and mutually reinforcing. internally, there are psychosocial cultural barriers, infrastructural barriers and barriers inherent in the very nature of the organisation. external or societal factors included negative attitudes and discrimination, which were simply transferred to the workplace. the prevailing context of socio-economic marginalisation was thus found to have a major impact on workplace practices. the continued socio-economic marginalisation of pwds in the community at large results in their failure to access basic amenities such as education and health. this further worsens their situation and means that they may lack the requisite qualifications and skills to be accepted into mainstream employment (fagin 2011). as pwds cannot access other essential services such as healthcare, they are in dire need of infrastructural and personal support, which further accentuates their marginalisation and makes obtaining employment doubly difficult. even if they gain employment, they remain strongly discriminated against and face serious limitations in progressing up the employment ladder. the result is a vicious circle of discrimination and marginalisation that needs to be addressed in both internal and external systems if the transformation agenda is to be advanced. managerial implications it is imperative that the south african public service addresses managerial barriers. the challenges related to mainstreaming pwds into public service employees are influenced by the actions of leaders. leadership development initiatives may be needed to enhance the capacity of public managers and administrators to ensure the successful integration of pwds. accommodation infrastructure should be considered to promote workplace access for pwds. in particular, the use of robots can be essential to improving the integration of pwds. however, to ensure the effective adoption of disability friendly infrastructure, a disability champion should be appointed from within the organisation to carry out assessments of workplace accessibility. such a disability champion can oversee all matters concerning disability. the south african public service should also foster a disability friendly organisational culture. a disability friendly organisational climate will address psychosocial issues such as discrimination and stigma that affect pwds in the workplace. it has been recognised that disability issues are largely shaped by the social environment. this includes: (1) culture, (2) social inequalities, (3) status, (4) political and power dynamics, (5) poverty, (6) abuse, (7) violence, (8) religion and more. it is also imperative that the south african public service consider adopting society-wide strategies to improve the employability of pwds. the recommendation is derived from the observation that public institutions are scrutinised by the general public and are affected by society’s events. the adoption of society-wide strategies for pwds, therefore, appears critical. this study has established the need to address the psychosocial and cultural impediments to facilitating employment initiatives for pwds. once public attitudes start to shift, it will become much easier to handle disability in the workplace. society-wide strategies should include dialogue with partners such as non-profit organisations, community leaders, churches, political institutions, non-governmental organisations and other community-based groups who are mostly concerned about the welfare of pwds in the communities in which the public service sector operates. the south african public service should also consider increasing disability-based advocacy. advocacy helps to educate employees in the workplace including those in charge of talent management practices as well as members of the community on disability matters. this is performed by advancing the interests of pwds in general. in other words, the successful integration of pwds into mainstream employment will be expedited by vigorous advocacy to eliminate socio-cultural and attitudinal barriers to disability. limitations and suggestions for future research this study adopted qualitative research approaches that involve exploring the viewpoints and experiences of participants. the kind of data collected and the data collection methods could be changed in favour of other methodologies to offer different perspectives. for instance, a quantitative study based on structural modelling would complement and increase the authority of this one. moreover, this research comprised a single case study of one provincial government department. future studies might look more widely at the public service in south africa or compare public service with private sector attempts to accommodate pwds. conclusion this study sought to identify and understand barriers to the employability of pwds in the south african public service. barriers to the socio-economic progression of pwds, including infrastructural and psychosocial factors, continue to prevail and cause the socio-economic marginalisation of pwds. the lack of integration of pwds into the mainstream was found to be because of conceptual, infrastructural, managerial and organisational themes that complicated the integration of pwds into mainstream employment. the themes demonstrated that there were strong organisational and managerial challenges that government departments still have a poor record in respect of the accommodation of pwds in their employment and structural systems. when this is considered in relation to the marginalisation and exclusion of pwds that was experienced in the apartheid era administration, it can be concluded that these findings point to deep-rooted failures in the transformation of south african societies as also argued in related literature on disability, societal transformation and development. the results of this study contribute to attempts to increasing the state of labour market equalisation in south africa. acknowledgements the authors would like to express their special thanks to dr liiza gie and prof. braam rust for their guidance and support throughout the study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions w.p.c. acted as the primary researcher for the study that formed part of his doctoral study, and r.n.m. was a secondary researcher who put together the article including writing the original draft, and reviewing and 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texas at austin, austin, tx, united states of america megan f. bastian school of medicine, saint louis university, saint louis, mo, united states of america sierra m. pinal department of orthopedic surgery, david geffen school of medicine, university of california los angeles, los angeles, ca, united states of america center for cerebral palsy, orthopaedic institute for children, los angeles, ca, united states of america mark b. klein dornsife college of letters, arts and science, university of southern california, los angeles, ca, united states of america bertha ndhlozi malawi against physical disabilities, rumphi, malawi mauricio silva department of orthopedic surgery, david geffen school of medicine, university of california los angeles, los angeles, ca, united states of america orthopaedic institute for children, los angeles, ca, united states of america john chipolombwe department of internal medicine, mzuzu central hospital, mzuzu, malawi rachel m. thompson department of orthopedic surgery, david geffen school of medicine, university of california los angeles, los angeles, ca, united states of america center for cerebral palsy, orthopaedic institute for children, los angeles, ca, united states of america citation alswang, j.m., belshe, w.b., killi, d., bandawe, w., silliman, e.s., bastian, a. et al., 2022, ‘mobility impairment and life satisfaction in the northern region of malawi’, african journal of disability 11(0), a1013. https://doi.org/10.4102/ajod.v11i0.1013 original research mobility impairment and life satisfaction in the northern region of malawi jared m. alswang, william b. belshe, dexter killi, weston bandawe, erin s. silliman, aaron c. bastian, brooke k. upchurch, megan f. bastian, sierra m. pinal, mark b. klein, bertha ndhlozi, mauricio silva, john chipolombwe, rachel m. thompson received: 11 feb. 2022; accepted: 09 june 2022; published: 22 sept. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there exist many psychosocial sequelae associated with mobility impairment, especially in low-resource settings where access to mobility assistive devices is limited. objectives: this study aims to (1) define the burden and presenting aetiologies of mobility impairment in the rural northern region of malawi and (2) assess the relationship between physical disability, life satisfaction and access to mobility aids. methods: at mobility device donation clinics throughout the northern region of malawi, adults living with mobility impairment were surveyed with a demographic questionnaire and a series of validated surveys to assess their physical activity levels (global physical activity questionnaire [gpaq]), degree of mobility impairment (washington group extended set questions on disability) and life satisfaction (patient-reported outcomes measurement information systems satisfaction with participation in social roles and general life satisfaction). results: there were 251 participants who qualified for inclusion, of which 193 completed all surveys. higher physical activity scores were positively correlated with increased life satisfaction: (1) satisfaction with participation in social roles (0.481, p < 0.0001) and (2) general life satisfaction (0.230, p < 0.001). respondents who had previously used a formal mobility device reported 235.5% higher physical activity levels ([139.0%, 333.0%], p = 0.006), significantly higher satisfaction with participation in social roles ([0.21, 6.67], p = 0.037) and equivocally higher general life satisfaction ([−1.77, 3.84], p = 0.470). conclusion: disability and mental health do not exist in isolation from one another. given the positive correlations between formal mobility device usage and both physical activity and life satisfaction, interventions that increase access to mobility-assistive devices in undertreated populations are imperative. contribution: this study contributes to the understanding of the complex relationship between physical disability, access to mobility aids, and life satisfaction. results from this study suggest the potential benefit that increasing access to mobility aids may have in improving the quality of life of mobility impaired persons in resource-limited settings, such as the northern region of malawi. keywords: mobility impairment; life satisfaction; physical activity; mobility assistive devices; physical disability. introduction the global burden of disability is increasing, growing by an estimated 52% from 1990 to 2017 (institute for health metrics and evaluation 2018). the multifaceted sequelae of living with disability are broad ranging and impact affected persons’ psychosocial, socio-economic and physical well-being. this has been born out in literature, as studies have shown that persons with disabilities have decreased access to healthcare services, education and both entering and participating in the labour market, effectively creating a cyclical relationship between disability and poverty (banks, kuper & polack 2017; ganle et al. 2020; moscoso-porras, fuhs & carbone 2019; payne, mkandawire & kohler 2013; soltani et al. 2019; trani et al. 2018; yeo & moore 2003). many of these downstream effects of living with disability relate to a lack of accessibility – to physical places, opportunities and, more broadly, to inclusion, respect and dignity. the effects of disability are magnified in resource-poor nations, such as malawi, a country in southeast africa with the 12th lowest gross domestic product per capita in the world (the world bank 2020) and a majority of its population living in rural areas (central intelligence agency 2021). in 2018, 10.4% of the population was affected by disability (national statistical office, malawi 2019), of which 13.0% did not have access to a healthcare facility and 89.0% of persons in need of assistive devices did not have access to them (united nations 2019). in the northern region of malawi, the least developed and most rural of the country’s three regions, the situation is worse: 19.0% of those living in the region are living with disability and 3.2% are living with a mobility impairment (relative to 2.8% nationally) (national statistical office, malawi 2019). whilst the economic consequences of disability in malawi and other lowand middle-income countries have been studied (backup 2009), the psychosocial consequences of these care gaps remain poorly defined in low-income rural settings such as the northern region of malawi. in partnership with the nonprofit crutches 4 africa (n.d.), more than 1800 mobility-assistive devices were donated to the government-sponsored organisation malawi against physical disabilities in an effort to help alleviate the burden of mobility impairment throughout the northern region of malawi. in conjunction with this donation effort, device recipients were surveyed in an attempt to better define the effects of their pre-existing physically limiting disabilities on their life satisfaction. mobility clinics were organised to assess mobility impaired adults for device fitting and to measure their baseline functional mobility and life satisfaction. the aims of this study are to: (1) define the burden and presenting aetiologies of mobility impairment in the rural northern region of malawi and (2) assess the relationship between physical disability, life satisfaction and access to mobility aids. methods design and study setting over a 10-day period in july 2019, observational, cross-sectional surveys of 251 adults with mobility impairments were conducted at mobility clinics in the rumphi, mzimba and nkhata bay districts of the northern region of malawi. ethical approval for this research was obtained both by the university of california los angeles and the malawian national health science research committee. the study team was composed of a research team from the united states of america (usa) and physiotherapists and volunteers from the government-sponsored organisation malawi against physical disabilities. the study population was selected using convenience sampling, in which persons with disabilities who were able to attend the mobility clinics were asked to participate in the study. employees of malawi against physical disability and local volunteers advertised the dates and times of the mobility clinics at which donation distribution and research would be conducted. adults with mobility impairments that attended mobility clinics were examined and assigned an appropriate mobility device by a licensed physiotherapist. results of preand post-assessment device usage were recorded. inclusion criteria were that research participants had to be adults (18 + years old) with mobility impairments – defined as any limitation in walking. clinic attendees that met these criteria were invited to complete a demographic questionnaire and a series of globally validated surveys to qualify their degree of mobility impairment, physical activity and life satisfaction. survey respondents were informed beforehand that their participation in the study was optional and would have no bearing on their receipt of an assistive device. verbal consent was obtained by the research team, and surveys were conducted verbally with the help of interpreters. attendees were excluded if they were over 18 years of age, had intellectual impairments precluding survey comprehension and/or completion and/or were unable to speak english, chichewa, chitumbuka or tonga. in total, 16 mobility clinics were organised in locations determined to minimise attendee travel and maximise accessibility to the dispersed populations of the three included districts. during the study period, 257 adults were assessed for device distribution, 251 of whom agreed to participate in the study. research participants who completed the demographic survey only were excluded from the analysis of mobility impairment and life satisfaction. the longitudinal effect of distributing mobility devices was not studied, as the coronavirus disease 2019 (covid-19) pandemic limited follow-up. measures a demographic survey designed by the study team was used to collect data on each respondents’ age, gender, highest level of education, employment status, and disability history. this survey also captured the mode of transportation and time needed to travel to their respective mobility clinics. the global physical activity questionnaire (gpaq) and the washington group extended set questions on disability were utilised to quantify physical disability and mobility impairment among participants. the gpaq is a world health organization-developed tool that catalogues respondents’ weekly activity levels in the contexts of work, daily travel and/or recreation. time spent actively is weighted based on the reported vigorousness of the activity and summed to yield a score representative of each respondent’s physical activity levels. the summary score is provided using metabolic equivalent minutes per week, represented in this study as metabolic equivalent minutes per day (world health organization 2002). the washington group extended set questions on disability is a survey developed by the washington group, the budapest initiative and the economic and social commission for asia and the pacific as a standardised and validated tool to assess disability across culturally and socio-economically diverse populations. the survey is broken down into various functional domains. the mobility domain was utilised in this study because it was used in the malawi population and housing census and allows for comparability between this study’s data and that collected from the census (national statistical office, malawi 2019; washington group on disability statistics 2019). two patient-reported outcomes measurement information systems surveys, developed by the national institute of health and independently validated, were utilised to measure life satisfaction among participants: (1) satisfaction with participation in social roles – short form 8a (promis health organization 2016) and (2) general life satisfaction – short form 5a (hahn et al. 2016; promis health organization 2017; vaughan, mulcahy & fitzgerald 2020). the satisfaction with participation in social roles survey was used to measure participants’ satisfaction with their ability to perform daily tasks and fulfil familial roles. the general life satisfaction – short form 5a survey was used to measure participants’ overall life satisfaction. for both quality-of-life measures, raw scores were standardised using patient-reported outcomes measurement information systems survey-specific scoring scales. higher summary scores indicate greater participant satisfaction. data analysis responses were summarised using mean and standard deviation, frequency and/or relative frequency as appropriate. correlations between mobility measures and quality of life measures were assessed using spearman’s correlation coefficient, and 95% confidence intervals (ci) were used. statistical analyses were computed using stata/ic 16.1, and p-values < 0.05 were considered statistically significant. ethical considerations the university of california, los angeles institutional review board (ucla irb) has approved the above referenced study. ucla’s federalwide assurance (fwa) with the department of health and human services is fwa00004642. results demographics of the 251 enrolled participants, 193 completed all four surveys. the remaining 58 completed only the demographic survey. the mean age of respondents was 64.7 years; 49.0% were female (table 1). meanwhile, 70.5% of respondents reported primary school as their highest level of schooling, whilst 11.2% reported not attending any school at all. table 1: summary of demographics, state of disability, and life satisfaction in the sample population. disability burden the mean duration of disability at the time of surveillance was 15.2 years. adjusting for age, the mean percentage of life spent with a mobility impairment was 29.6%. of the washington group extended set questions on disability respondents, 23.4% reported having some difficulty walking, whilst 61.4% reported having a lot of difficulty and 11.2% reported being unable to walk (table 2). specific gpaq results, including metabolic equivalent minutes per day and sedentary minutes per day, are summarised in table 1. table 2: difficulty walking, as measured by the washington group extended set questions on disability, in the sample population compared to the general population, by district. the burden of specific physical disabilities captured is summarised in table 3. of the 251 participants, 215 reported contributing conditions. many of these respondents reported more than one contributory condition. of these 215 participants, 196 (91.2%) were affected by joint-related and/or degenerative conditions. the average age of the participants in this group was 72.4 years old, whilst those whose disabilities were of a traumatic or neurological and/or congenital aetiology had an average age of 55.7 and 52.7 years, respectively. among all participants, the most common contributor was knee pain (n = 64; 26.8%), the most common neurologic aetiology was poliomyelitis (n = 22; 10.2%) and the most common traumatic aetiology was lower extremity amputation (n = 12; 5.6%) (table 3). table 3: burden of musculoskeletal disease. mobility device history seventy-three point two percent (183/251) of respondents used or had used some sort of mobility device in the past, the most common of which included: (1) sticks (n = 64), (2) canes (n = 37), (3) axillary crutch(es) (n = 21) and (4) lofstrand crutch(es) (n = 13). post-assessment, more lofstrand crutches were prescribed (n = 33) than axillary crutches (n = 28), increasing the relative rate of lofstrand crutch use among crutch users from 38.2% to 54.1%. similarly, 16 wheelchairs were prescribed post-assessment, whilst only nine respondents had wheelchairs pre-assessment. preand post-assessment device distribution data can be found in table 4. table 4: preand post-assessment device usage. relative to the 103 gpaq respondents who had not previously used a formal mobility device, the 70 respondents who had used formal devices reported 235.5% of the amount of metabolic equivalent minutes per day (95% ci: [139%, 333%], p = 0.006). those who had used a formal mobility device also reported significantly higher satisfaction with participation in social roles (95% ci: [0.21, 6.67], p = 0.037) and equivocally higher general life satisfaction (95% ci: [−1.77, 3.84], p = 0.470). mobility and life satisfaction higher physical activity scores (measured in metabolic equivalent minutes per day) were positively correlated with life satisfaction scores, as measured by both satisfaction with participation in social roles – short form 8a (spearman’s rho 0.481; p < 0.0001) and general life satisfaction – short form 5a (spearman’s rho 0.230; p < 0.001). increased time spent sedentary was negatively correlated with both satisfaction with participation in social roles (spearman’s rho −0.507; p < 0.0001) and general life satisfaction (spearman’s rho −0.306; p < 0.0001) (table 5). age was negatively correlated with metabolic equivalent minutes per day (spearman’s rho −0.345; p < 0.0001) and satisfaction with participation in social roles (spearman’s rho −0.193; p < 0.01) but not with general life satisfaction. table 5: correlations between physical activity and life satisfaction, further stratified by gender. on average, female gpaq respondents had higher physical activity scores and sedentary activity scores than male participants, but neither were statistically significant. there was also no statistically significant difference in satisfaction with participation in social roles or general life satisfaction between genders. discussion the primary objectives of this study were to examine the current state of disability in the rural northern region of malawi and to better define the relationship between physical activity and life satisfaction. in this sample population, a significant positive correlation was revealed not only between physical activity and life satisfaction but also between formal mobility device utilisation and physical activity, as well as formal mobility device utilisation and life satisfaction. literature focusing specifically on the association between mobility impairment and life satisfaction, especially in low-resource settings, is relatively limited, but this study’s results are generally concordant with previously published data that demonstrate the negative impact that mobility impairment has on various psychosocial outcomes. researchers studying 4245 persons aged 45 years and older in china found a significant correlation between mobility impairment and decreased life satisfaction, which was attributed in part to decreased social engagement in the affected population (li & loo 2017). studies conducted in high-income countries have shown similar results. using a national longitudinal survey focused on the biopsychosocial aspects of health and well-being, researchers studying the population of the usa found that mobility impairment was not only associated with decreased life satisfaction but also with negative affect, pessimism and decreased coping skills (na & singh 2021). literature has also shown that the provision of assistive devices like prostheses and/or orthoses can have broad and multifactorial effects on improving the quality of life of persons with disability. prostheses and orthoses were found to improve psychological, environmental and physical health quality of life in south india (magnusson et al. 2019) and physical activity in south africa (pienaar & visagie 2019). similarly, assistive devices were shown to increase employment and school attendance in southern africa (eide & øderud 2009) and environmental health in indonesia (toro, eke & pearlman 2016). this is in accordance with the results presented in this article, suggesting that treating mobility impairment has the potential to also treat its downstream sequelae. however, it is important to note that this topic remains under-studied, particularly in resource-limited nations, as a scoping review article of 430 publications on the provision of prostheses or orthoses in low-resource environments included only six studies with metrics related to quality of life (ikeda et al. 2014). whilst this study’s sample population is not representative of the diverse populations throughout sub-saharan africa, similar psychosocial sequelae of disability likely exist in other low-resource settings. especially in the developing world, where the rural majority often relies on smallholder farming, mobility is vital to successful social and economic integration. thus, better understanding the context-specific impacts of mobility impairment and deploying appropriate strategies to address underlying conditions with mobility-assistive devices has the potential to increase physical activity and social and economic engagement (bertrand et al. 2017; kabiri et al. 2018; rosso et al. 2013). whilst the international community has placed increased emphasis on the rights of disabled persons (united nations 2007, 2015), empathy alone cannot substitute for surveillance and treatment of physical disability in lowand middle-income countries that have historically borne a disproportionate share of the burden of disability because of resource and geographic limitations (murray & lopez 1997). device donation efforts, such as the one described in this article, may also be parlayed into health surveillance efforts in hard-to-reach rural populations. as was the case in this study, coupling health surveillance and/or cross-sectional research with donation initiatives can help incentivise clinic attendance and facilitate convenience sampling. this coupled method benefits respondents both by: (1) providing direct aid and (2) cataloguing the disease burden and needs of affected populations – allowing for more targeted, data-informed interventions in the future. through this strategy, aid and research can be conducted in a mutually beneficial, needs-driven manner not possible through isolated aid or isolated research alone. this coupled strategy can be similarly employed for treatable disability related to vision and hearing deficits. whilst coupling research with aid provision facilitates needs-based closed-loop communication in target populations (barstow et al. 2014), there are ethical implications of this strategy that must also be considered. in general, donation initiatives inherently create a power imbalance between the provider and recipient of the aid (zarka, farhat & gidron 2018). those completed in the absence of input from local stakeholders run the risk of neglecting community needs and cultural landscapes and can be wasteful and deleterious (bauer 2017; mcdonald et al. 2019). recognising the power structures in place whilst conducting this study, the research team took steps to preserve autonomy and promote beneficence in the target population. to do this, local stakeholders – employees and volunteers from the organisation malawi against physical disabilities in conjunction with tribal leadership – were centrally involved with research planning and execution. malawi against physical disabilities oversaw the entirety of the donation process to ensure that the initiative safeguarded individual and community needs and beliefs. using this locally based structure, efforts were made to avoid a common pitfall of donation initiatives – providing short-term benefit, not based on local context or needs, at the expense of a more long-term, sustainable solution (newall et al. 2019). whilst this study adds to the growing body of literature related to physical disability and its psychosocial manifestations in low-resource environments, there are many relevant limitations to this study that should be considered. first, because of the impact of the covid-19 pandemic, the research team was unable to reassess participants after receipt of mobility devices to measure the impact of device provision on participant mobility and life satisfaction. in addition, this study utilised convenience sampling, in which only persons with disabilities that were able to attend the mobility clinics were included in the study. whilst efforts were made to select clinic sites that were centrally located and accessible to target populations, this sampling strategy may have impacted the results by precluding the participation of those unable to travel because of a higher degree of disability, geographic constraints and/or financial limitations. additionally, the authors recognise that despite the efforts mentioned previously, power imbalances associated with the provision of aid may have led to some response bias among survey respondents. lastly, it is also important to note that the study population is not nationally representative. in this study, 23.4% of washington group extended set questions on disability respondents reported having some difficulty walking, whilst 61.4% reported having a lot of difficulty and 11.2% reported being unable to walk. in comparison, the malawi population and housing census data reported that 83.6% of respondents have some difficulty walking, 13.5% have a lot of difficulty walking and 2.92% are unable to walk (national statistical office, malawi 2019). this skew towards severe disability was expected given the use of convenience sampling but limits the study’s generalisability. whilst this study focused on physical disability as it relates to life satisfaction and access to mobility assistive devices, the biopsychosocial consequences of physical disability are far-reaching and extend into the domains of financial and psychological well-being. future research with longitudinal follow-up is needed to better understand both the impact that mobility impairment has on the lives of persons with disabilities and the efficacy and ethics of coupling research and donation efforts. conclusion in summary, given the strong positive correlations found between: (1) physical activity and life satisfaction, (2) formal mobility device usage and physical activity and (3) formal mobility device usage and life satisfaction, increasing access to mobility assistive devices in undertreated populations is imperative. such interventions have the power to increase mobility and subsequently improve the quality of life of persons with disabilities, likely by enabling home and workplace productivity and increasing access to social services like banking, education and healthcare. moreover, dissemination of mobility devices and other adaptive equipment may be coupled with health-surveillance research, allowing for more data-driven targeted interventions in the future. as exemplified in this study, disability and mental health do not exist in isolation from one another. the impact of mobility impairment is multi-dimensional, and further research and evidence-based interventions should be prioritised to address the far-reaching physical and mental health inequities that stem from it. acknowledgements the authors thank the nonprofit organisations crutches 4 africa and project malawi for organising the donation of mobility-assistive devices to malawi. competing interests the authors have declared that no competing interests exist. authors’ contributions the authors confirm their contribution to the article as follows: study conception and design: j.m.a., w.b.b., d.k., r.m.t., m.s., j.c.; data collection: j.m.a., w.b.b., d.k., w.b., e.s.s., b.k.u., m.f.b., s.m.p., m.b.k., b.n.; analysis and interpretation of results: j.m.a., w.b., a.c.b., s.m.p., m.b.k.; and draft manuscript preparation: j.m.a., w.b.b., d.k., e.s.s., a.c.b., b.k.u., m.f.b. all authors reviewed the results and approved the final version of the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article, as no new data were created or analysed in this study. disclaimer the views and opinions in this article are those of the authors and do not necessarily reflect the official policy position of any affiliated agency of the authors. references backup, s., 2009, the price of exclusion: the economic consequences of excluding people with disabilities from the world of work, international labor organization, geneva. banks, l.m., kuper, h. & polack, s., 2017, ‘poverty and disability in lowand middle-income countries: a systematic 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https://www.who.int/ncds/surveillance/steps/gpaq%20instrument%20and%20analysis%20guide%20v2.pdf. yeo, r. & moore, k., 2003, ‘including disabled people in poverty reduction work: “nothing about us, without us”’, world development 31(3), 571–590. https://doi.org/10.1016/s0305-750x(02)00218-8 zarka, s., farhat, m. & gidron, t., 2018, ‘humanitarian medical aid to the syrian people: ethical implications and dilemmas’, bioethics 33(2), 302–308. https://doi.org/10.1111/bioe.12463 abstract introduction research methods and study design results discussion conclusion acknowledgements references about the author(s) helen suich independent researcher, canberra, australia marguerite schneider department of psychiatry and mental health, alan j flisher centre for public mental health, university of cape town, cape town, south africa citation suich, h. & schneider, m., 2022, ‘monitoring disability inclusion: setting a baseline for south africa’, african journal of disability 11(0), a1020. https://doi.org/10.4102/ajod.v11i0.1020 note: additional supporting information may be found in the online version of this article as online appendix 1. original research monitoring disability inclusion: setting a baseline for south africa helen suich, marguerite schneider received: 13 feb. 2022; accepted: 16 mar. 2022; published: 27 may 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the progressive realisation of disability inclusion requires political will and commitment, and comprehensive monitoring is necessary to give a clear understanding of what needs to be addressed and to highlight the gaps and barriers to the achievement of social inclusion of people with disabilities. objectives: this article uses an existing dataset to present a baseline assessment of inclusion for men and women with no, mild or moderate disability severity and with no or moderate affect difficulties in south africa. methods: an existing dataset, capturing individual-level data for 8499 individuals, collected in 2019 across south africa was analysed. variables were utilised to represent aspects of nine domains of disability inclusion, and outcomes were compared using chi-squared tests (with bonferroni adjustments) for groups categorised by disability severity and gender, and for affect severity and gender. results: overall, inclusion levels declined with increasing disability severity, and there were fewer differences in inclusion levels between those with and without affect difficulties than for those with functioning difficulties (as measured using the washington group on disability statistics’ short set of six questions on functioning). conclusions: the article concludes by discussing several approaches to using the data to design policy responses, each of which results in a different range of domains that may initially be prioritised and targeted. keywords: disability inclusion; south africa; disability severity; psychosocial disability; monitoring; progressive realisation. introduction inclusion, also referred to as social inclusion, is achieved when all people – including people with disabilities – have a sense of belonging to the ‘us’ of mainstream society rather than ‘them’, and of being recognised as a person being worthy of respect (ikäheimo 2009:79). realising disability inclusion requires political will and commitment, together with a clear understanding of what needs to be addressed in inclusion interventions. the 2030 agenda for sustainable development, following the framework provided by the united nations convention on the rights of persons with disabilities (un 2006) sets out the inclusion of people with disabilities as a significant contributor to reducing poverty and increasing growth, in addition to ensuring the rights and full participation of all, including people with disabilities (un 2015). the sustainable development goals encapsulate this with the inclusion of a number of indicators disaggregated by disability status so that progress towards inclusion can be monitored. the inclusion of people with disabilities in poverty reduction strategy papers also attests to the importance of inclusion in effective poverty reduction strategies (adjei-amoako 2016; maclachlan et al. 2014; mulumba 2011; mwendwa, murangira & lang 2009; wazakili et al. 2011). more narrowly, the business case for disability inclusion has also been clearly documented showing that a strong disability inclusive policy gives workplaces ‘access to talent, increased innovation, increased engagement and retention, a better reputation and benefits for everyone’ (ilo 2016:4). where inclusion goals or targets are set, monitoring should occur, incorporating the development of policies, their implementation and the outcomes of implementation, and encompassing both structural (van der veen 2011) and individual perspectives (schneider 2011) – to reflect how changes in infrastructure and systems impact on individuals with disabilities. comprehensive monitoring of all of these aspects is necessary to highlight gaps and barriers that need to be addressed to achieve the social inclusion of people with disabilities. ideally, such monitoring would be undertaken by the national statistics organisation (e.g. statistics south africa in south africa), in an open and transparent manner so that organisations of people with disabilities and other support agencies trust the official figures. this trust would likely be strengthened if these organisations were also involved in selecting the detail of what was monitored. monitoring inclusion of disability at the policy level should examine the extent to which policies explicitly address disability issues within their development, and in the final document (lang et al. 2019; schneider et al. 2013). the lack of an explicit mention of disability inclusion will hamper implementation efforts to address the needs of people with disabilities. from a structural perspective, monitoring implementation processes assesses outcomes such as adherence to building accessibility regulations, implementation of inclusive education and employment practices and promotion of anti-discrimination awareness (van der veen 2011). individual-level outcomes can be monitored through individuals’ experiences and their perspectives on changing levels of participation across the range of relevant domains (schneider 2011). a rapid search was conducted on scopus using the terms ‘disability and inclusion’ and the first 150 papers (an arbitrary number that was deemed sufficient to give a reasonable sample) reviewed from the results yielded 116 relevant papers in total, published or in press in 2020 and 2021. almost two-thirds of these papers were about inclusive education (e.g. johora, fleer & hammer 2021; kunz, luder & kassis 2021; reese 2021), just in excess of one in 10 was about inclusion in employment and the workplace (e.g. clube & tennant 2021; engeland et al. 2021), and the remainder (one-quarter) covered the legal aspects of inclusion (e.g. buckley & quinlivan 2021), or dealt with inclusion in religion (e.g. bunga, laure & kiling 2021; lorenzo & duncan 2021), in disaster management (e.g. alathur, kottakkunnummal & chetty 2021) and in community and physical spaces (e.g. carnemolla, robinson & lay 2021; cerdan chiscano & jiménez-zarco 2021). this highlights the push at the global level for inclusive education for children with disabilities, and much less attention is given to other areas of inclusion. only one study, by santuzzi, martinez and keating (2021), addressed measurement issues and it argued that creating an inclusive work environment can facilitate disclosure and hence counting of the number of employees with and without disabilities. from this literature, it is not clearly evident which domains should be prioritised in promoting and achieving the progressive realisation of inclusion, or how to monitor this at the individual level. in this article, we therefore focus on monitoring outcomes at the individual level across a range of inclusion domains, following a framework and ‘proof of concept’ of disability inclusion monitoring, described in the methods section and in detail in schneider & suich (2021). this framework is the basis for the data analysis presented, which examines the inclusion levels of individuals according to their disability severity, their anxiety and depression (or affect) severity and their gender. this analysis can, therefore, be viewed as a baseline assessment of inclusion for people with disabilities in south africa, which can be used by policymakers and other stakeholders to identify and highlight priority areas for policy responses to improve inclusion. if future iterations of the same (or similar) data collection occurred, subsequent data analysis could then provide information about whether the progressive realisation of inclusion was being achieved, and in what domains. research methods and study design the disability inclusion framework the framework for the measurement and monitoring of key domains of disability inclusion was proposed in schneider & suich (2021), which also tested a proof of concept of disability inclusion measurement using an existing dataset. the original framework had 12 domains, selected through a literature review, and 40 indicators were selected for these domains on the basis of information available in the existing dataset, collected in south africa in 2019 (described in detail in ‘the individual deprivation measure south african data’ section below). for the analysis presented in this article, the original framework has been modified – the number of domains has been reduced to nine, comprising 32 indicators, as shown in table 1. the newly named ‘social relationships’ domain comprises the four (unchanged) indicators that were previously in the three domains of ‘interpersonal status’, ‘personal relationships’ and ‘being involved’ in the original framework. the change reduced the overlap of concepts being measured in these three domains, and improved the balance of the number of indicators in each domain across all domains. (some imbalance remains, with the living conditions domain having 12 indicators, compared to a maximum of four in both the social relationships and personal safety domains.) table 1: domains of inclusion and indicators used to measure aspects of those domains. four indicators from the economic opportunities and contributions domain are not reported below, because there is insufficient information to determine whether each individual can be categorised as included or excluded on the basis of their activities (i.e. whether contributions were not made by respondents because they were unable, or because they were unnecessary). the four indicators were unpaid domestic and care work, fuel collection responsibility, water collection responsibility and on-call time. however, these four indicators – with relevant amendments to data collection tools – should be included in future, as they reflect a range and variety of productive contributions made by individuals to their household that should be recognised, irrespective of people’s disability status. two indicators in the support systems domain – receipt of a disability grant and receipt of an old-age pension – have been merged into a single indicator, ‘grant receipt’ as, in south africa, each individual is potentially eligible to receive only one type of grant. one indicator (carer at home) in this domain is not reported, because the available information was insufficient for this analysis. the three indicators originally presented in the healthcare access domain have been merged into a single indicator, incorporating the information from all three of the original indicators for each individual. the individual deprivation measure south africa data the data used in this analysis are a subset of the individual deprivation measure (idm) dataset for south africa collected in 2019 and originally designed to measure multidimensional deprivation. the variables in the idm dataset which best address aspects of the nine domains in the disability inclusion framework set out above have been utilised in this analysis, and are drawn from the main national sample. comprehensive information about the data collection methods and the full dataset can be found in schneider & suich (2021) and suich et al. (2020). enumeration areas (eas) were randomly selected in each of the nine provinces of south africa, stratified by rural or urban location, and all dwellings within the selected eas were identified by using satellite imagery to remote sense roofs. dwellings were then randomly sampled and approached for interview. data are presented for all eligible individuals interviewed – those aged 16 years and over residing in the sampled dwellings, who were able to give both informed and ongoing consent and were able to communicate for themselves, a total of 8499 individuals. because no proxy interviewing was undertaken, the sample of people with disabilities is likely to be skewed to individuals with less severe disabilities, who were able to respond for themselves. all interviews were conducted face-to-face, using computer-assisted personal interviewing, in privacy, in any of the interviewees choice of the 11 official spoken languages of south africa and by an enumerator of the same gender as the interviewee. data analysis was carried out using the r language (r core team 2021) in r studio version 1.4.1103 (r studio team 2020). the ‘survey’ package (lumley 2020) was used to calculate the survey weighting and for the raking procedures, undertaken to maximise the generalisability of this sample to the national population using data on age, gender and race from the community survey 2016 (statistics south africa 2016). ‘table one’ was used to produce relevant output for the analysis (yoshida & bartel 2020). at both the indicator and domain levels, results are presented as the proportion of the weighted sample that falls into each of the three categories – inclusion, exclusion and in between – as described in detail below. in the comparison of outcomes, for disability severity and gender, and for affect severity and gender, exact p-values from chi-squared tests are reported, calculated using the bonferroni adjustment for multiple comparisons to account for type i errors (i.e. rejecting the hypothesis when it is true). small differences between groups can be statistically significant with large samples such as this, so the results presented below focus on practical and meaningful differences between groups, not only those with statistically significant differences. definitions of disability and affect severity the measurement of disability in large-scale surveys has been consolidated through the work of the washington group on disability statistics (wg) in developing a set of questions about six core functioning domains referred to as the short set (wg ss) (wgds ud) and which were included in the idm survey tools. for disability severity, those classified as having no disabilities reported ‘no difficulty’ on any functioning domain, or ‘some difficulty’ on only one functioning domain, and those classified as having mild disabilities reported ‘some difficulty’ for between two and four functioning domains. those classified as having moderate or severe disabilities (referred to as moderate severity below) reported ‘some difficulty’ for five or six functioning domains, or ‘a lot of difficulty’ or ‘cannot do at all’ for at least one functioning domain (or a combination of these responses). this includes the category five or more ‘some difficulty’ responses in the moderate category, but is otherwise the same as the recommended cut-offs for disability statistics reporting (madans & loeb 2017). mental health measures are important to include in any consideration of disability inclusion, as people with psychosocial disability are integral to the united nations convention on the rights of people with disabilities (un 2006), and the wg is currently working on testing questions that identify people with such disabilities. included in the wg extended set are questions on the frequency and severity of both depression and anxiety, which is known as the ‘affect’ domain (wgds 2011). the wg has proposed that these four questions are combined to create an indicator of the presence and severity of affect problems or difficulties. given the growing recognition of the importance of including people with psychosocial disability in monitoring disability, the affect indicator is used in this analysis as a way, albeit a limited one, to identify the seventh domain of disability in addition to the six domains in the wg ss. ongoing and unpublished work by the wg, on developing measures that ensure inclusion of people with psychosocial disability in disability statistics suggests that people with psychosocial disability are more likely to report more severe affect difficulties than people without (see e.g., schneider & de palma 2020). as such, the affect indicator in this analysis is reported with two levels of severity – none and moderate. those reporting mild psychosocial disability have been merged into the ‘none’ category in a crude attempt to distinguish those with a psychosocial disability from those likely to be reporting distress associated with the impact of having a disability or in reaction to adverse life circumstances. table 2 shows the intersection of disability and affect severity in the sample, and the relative sample sizes and demographic characteristics for both groups can be seen in table 3. table 2: proportion of sample reporting disability severity and affect severity (%, unweighted). table 3: demographic characteristics by disability severity and affect severity (%, weighted sample). table 2 shows the intersection of the experiences of individuals with respect to functioning difficulties and anxiety and depression, with approximately double the proportion experiencing moderate affect but no disability compared to those with a moderate disability but no affect difficulties, and a relatively small proportion of the overall sample experiencing both moderate disability and moderate affect problems. it is notable that in table 3, there is a high proportion of women and older people (65 years and older) in both the mild and moderate disability severity categories, which is in line with global trends (mitra & sambamoorthi 2014), and shows relatively higher levels of moderate affect problems amongst women compared to men (see also herman et al. 2009). data analysis indicators as noted above, 32 indicators were created from variables in the idm dataset to measure different aspects of the nine domains of inclusion in the framework. for these indicators, each individual’s response was categorised into one of the three groups according to whether they represented inclusion or exclusion, or an in between category. definitions of each of these categories at the indicator level are provided in online appendix 1, table 1-a1 in the supplementary materials. of these, 14 indicators measure binary outcomes, with all possible survey responses split into inclusion and exclusion. for these 14 indicators, the ‘in between’ category was used only for the few individuals who refused to answer the relevant survey question. for the remaining 18 indicators, the ‘in between’ category provides increased nuance regarding the level of inclusion of respondents. this category represents responses that are considered as neither ‘included’ nor ‘excluded’, as well as the responses of those few individuals who refused to answer the relevant survey questions. for example, in the food security indicator, those classified as ‘included’ were food secure, those who were classified as ‘excluded’ experienced severe food insecurity, whilst those in the ‘in between’ category experienced mild-to-moderate food insecurity. domains the analysis at the domain level focuses on the proportion of the population from each of the groups that are classified as included, to allow the identification of those domains where significant proportions of each group are not included. table 4 describes how the cut-offs for the categories of inclusion, exclusion and in between at the domain level are constructed, depending on the number of indicators in each domain. table 4: definitions of inclusion, exclusion and in between categories for each domain. given the lack of empirical standards or levels of achievement set in the literature for measuring inclusion, we have set cut-off levels that seem to have good face validity based on qualitative findings in the literature, and although we recognise that these are relatively arbitrary, it is beyond the scope of this article to conduct sensitivity testing on these cut-offs, although further investigation is recommended. ethical considerations this article has used an existing dataset, and information regarding the original studies’ ethical approval is provided. however, because the analysis presented in this article was conducted using this already existing dataset, no ethical clearance certificates are included in this submission. the ethical approvals for the original study were gained from the australian national university human research ethics committee (protocol no. 2016/355); south african human sciences research council research ethics committee (protocol no. rec 5/21/11/18); limpopo provincial research ethics committee (clearance certificate no. lprec/35/2018: pg). no ethical certificates were issued, only approval numbers were recorded. results disability severity and gender disaggregated results domain results table 5 shows the domain results by inclusion category for the six groups, disaggregated by disability severity and gender. the following presentation of results focuses on the proportion in each of these six groups categorised as included, unless specifically stated otherwise. table 5: domain results by inclusion category, disaggregated by disability severity and gender (% weighted). overall, there is a pattern of declining inclusion levels with increasing disability severity (from none through mild and moderate), but there is no single pattern in the differences between men and women across the three disability severity classifications. for all domains except social relationships, there are statistically significant and sometimes large differences in the outcomes amongst the three disability severity classifications, although there are relatively low levels of inclusion across all three disability severity classifications for many of the domains. healthcare access is the only domain in which a majority of all six groups are categorised as included (all in excess of 80%), and economic opportunities and contributions is the only other domain for which more than 50% of all six groups are classified as included. the worst outcomes for all three disability severity classifications are in the domains of social relationships and personal safety, with inclusion rates of 50% or less for all six groups. inclusion rates for the latter domain are less than 25% for all six groups, and the female inclusion gap (the difference in inclusion levels where women have worse outcomes) is the largest, with inclusion rates for women approximately half of those for men in each disability severity classification. in the education domain, inclusion rates for men are lower than for women across all three disability severity classifications. however, the male inclusion gap (i.e. the difference in inclusion levels where men have worse outcomes) is largest for men with no disabilities and for moderate disabilities in the voice domain, but is largest for men with mild disabilities in the economic opportunities and contributions domain. for individuals with no disabilities, there are three domains for which inclusion rates are lower for women than men (economic opportunities and contributions, healthcare access and personal safety), and four domains in which inclusion rates are lower for men than women (living conditions, institutional status, voice and education). there are virtually no differences in outcomes between men and women in two domains for those with no disabilities (social relationships and support systems). for those with mild disabilities, lower inclusion rates for women occur only in the personal safety domain, whilst lower inclusion rates for men occur in five domains (living conditions, economic opportunities and contributions, support systems, institutional status and education), and there are virtually no differences between men and women in three domains (social relationships, voice and healthcare access). finally, for those with moderate disabilities, lower inclusion rates for women occur in two domains (personal safety and institutional status), lower inclusion rates for men occur in three domains (economic opportunities and contributions, voice and education), and there is virtually no difference in outcomes in four domains (social relationships, living conditions, support systems and healthcare access). there are five domains in which those with no disabilities have substantially higher inclusion rates than those with mild and moderate disabilities – living conditions, economic opportunities and contributions, support systems, institutional status and education. there are also smaller but important differences in healthcare access. those with mild disabilities have higher inclusion rates than those with moderate disabilities for living conditions and education, and the differences between the two groups are relatively smaller for other domains. the voice domain demonstrates an atypical pattern, with individuals with no disabilities less likely to be classified as included compared with individuals with mild or moderate disabilities. indicator results the results for each of the indicators, disaggregated for each of the six groups (by disability severity and gender), are shown in table 6 and, in contrast to the results at the domain level, the discussion focuses on the proportion categorised as excluded – at this level, it may be desirable for policymakers to focus on the very worst outcomes. table 6: indicator results by inclusion category, disaggregated by disability severity and gender (%, weighted). three main patterns of differences amongst the three disability severity classifications can be observed across the indicator-level results in table 6: exclusion rates are lowest for those with no disabilities, highest for those with moderate disabilities and in between for those with mild disabilities. this is the most common pattern and holds for 13 indicators across six domains. the same or similar exclusion rates are experienced by those with mild and moderate disabilities, and these are worse than for individuals with no disabilities. this pattern holds for eight indicators across four domains. there are no statistically significant differences amongst the three disability severity classifications, which is true for six indicators in three domains. there are also two indicators in two domains where those with mild disabilities have higher exclusion rates than those with no and moderate disabilities, and three indicators across two domains where those with no disabilities have the highest exclusion rates compared to those with mild and moderate disabilities. for individuals with no disabilities, there are few differences between men and women for 23 indicators out of 32, men have higher exclusion rates for five indicators and women have higher exclusion rates for four indicators. for individuals with mild disabilities, there are 12 indicators where there are no differences in exclusion rates for men and women, whilst men experience higher exclusion rates than women in 15 indicators and women have higher exclusion rates than men in five indicators. for individuals with moderate disabilities, there are 12 indicators with no gender differences in exclusion rates, higher exclusion rates for men in eight indicators and higher exclusion rates for women in 12 indicators. the ability to reciprocate indicator has the worst outcomes for all six groups. other indicators with high exclusion levels amongst all six groups are food security and current possession of a birth certificate. indeed, these are the only three indicators with exclusion rates of 30% or more of men and women with no disabilities. in addition to these three, very high exclusion rates (i.e. in excess of 50% categorised as excluded) occurred in three indicators for women with mild disabilities, five for men with mild disabilities, six for men with moderate disabilities and four for women with moderate disabilities. indicators with high exclusion rates common to the four groups of women and men with mild and moderate disabilities are food security, grant receipt and the three indicators in the education domain. three of the indicators where the male exclusion gap is largest (i.e. the difference in the proportions categorised as ‘excluded’, where men have worse outcomes) are for voting inclusion, clothing and footwear ownership and public transport availability and affordability, with little variation across the disability severity classifications. however, the largest female exclusion gap (i.e. the difference in the proportions classified as ‘excluded’, where women have worse outcomes) differs with disability severity – for women with no disabilities, the gap is largest for labour force participation, for women with mild disabilities, it is safety at home, and for women with moderate disabilities, it is for safety in the neighbourhood. affect severity domain results the results presented at the domain level focus on the proportion of each of the four groups (disaggregated by affect severity and gender) categorised as included, unless otherwise stated. there are three main patterns of differences in inclusion levels between the two affect severity classifications (none and moderate) that are identifiable in table 7, including: no statistically significant differences between affect severity for two domains (social relationships and institutional status), with particularly low inclusion levels for social relationships; lower inclusion levels for those with moderate affect problems compared to those with none for six domains (living conditions, economic opportunities and contributions, support systems, education, health care access and personal safety), with particularly low inclusion levels for all four groups in education and personal safety; similar, relatively low, inclusion levels for both affect groups, but lower inclusion amongst men compared to women for the voice domain. table 7: domain results by inclusion category, disaggregated by affect severity and gender (%, weighted). healthcare access is the only domain with high inclusion rates for all four groups (as for disability severity), and there are three domains with inclusion rates of 50% or more for all four groups (support systems, institutional status and education). the worst outcomes for all four groups are in the three domains of social relationships, voice and personal safety, with inclusion rates of 50% or less for each of the four groups. there are three domains for which inclusion rates are lower for women than men for both classifications of affect severity – personal safety (as for disability severity), healthcare access and support systems, and one where inclusion rates for men are lower than for women, the voice domain (as is true for the comparison of disability severity). the largest inclusion gaps between the two affect classifications are in the three domains of living conditions, support systems and economic opportunities and contributions (in each case, with much worse outcomes for those with moderate affect severity). for individuals with no affect problems, there were four domains for which there are no inclusion gaps between men and women (social relationships, living conditions, institutional status and education), whilst men have lower inclusion rates than women in one domain (voice) and women had lower inclusion rates than men on four domains (economic opportunities and contributions, support systems, healthcare access and personal safety). for those with moderate affect problems, there were no differences between men and women for two domains (social relationships and institutional status), men had lower inclusion rates in four domains (living conditions, economic opportunities and contributions, voice and education), whilst women had lower inclusion rates in the remaining three domains (support systems, healthcare access and personal safety). for those with moderate affect difficulties, the largest female inclusion gap was in personal safety, whilst the largest male inclusion gap was in economic opportunities and contributions. the latter result is likely to be related to the number of men and women in the sample size and to the higher proportion of older women (than men) in the group, who are more likely to be not in the labour force by choice. for those with moderate affect difficulties, the inclusion gaps (where they occur) tend to be larger for men, but there are a larger number of domains where men have better outcomes on an average than women. discussion levels of inclusion by disability and affect severity as can be seen from these results, inclusion levels decline with increasing disability severity, and there are fewer differences in inclusion levels between those with and without affect difficulties than for those with functioning difficulties. the results also demonstrate the universally poor outcomes for social relationships and personal safety and the relatively good outcomes for healthcare access, regardless of gender, disability severity or affect severity. the healthcare access domain showed the best outcome of all domains with at least 80% of each group being in the ‘included’ category. this is likely partly because of the single indicator covering healthcare use and quality in the domain. the domain does, nevertheless, show the expected decline in inclusion associated with increasing disability severity and affect severity. the high number of older people in the mild and moderate disability severity classifications, many of whom are likely to have chronic health conditions, could reflect the high rate of use of healthcare services by this group. a more nuanced analysis by age could help elucidate this. the domain-level results also show that men are often less likely to be categorised as included for more indicators within a domain than women in that disability severity classification. this is explained, at least in part, by the smaller number of men with disabilities compared to women – only 34% and 31% of people with mild and moderate disabilities, respectively, are men – in line with international evidence that there are a higher proportion of women than men with disabilities, particularly amongst older age cohorts (mitra & sambamoorthi 2014). thus, a lack of inclusion would have to affect a much larger number of women (absolutely) for the proportions of men and women experiencing that lack of inclusion to be equal. the comparison of people with functioning disabilities and those with affect difficulties suggests that people with functioning disabilities are less likely to be included across a larger number of domains than those with affect difficulties, particularly for those with moderate disabilities. one exception is in the voice domain where women with moderate affect difficulties show less inclusion than women with moderate functioning disabilities. the higher levels of inclusion amongst those with functioning disabilities in this domain may be linked to the combination of involvement in disabled people’s organisations, and the explicit efforts by the electoral commission and others to improve voting participation by people with disabilities (likely focusing on those with functioning disabilities), where people with psychosocial disability still experience high levels of stigma (semrau et al. 2015) and could be finding it difficult to have a voice. the use of a moderate or severe affect as a measure of psychosocial disability has merit but remains to be fully validated. however, the proposed use of a moderate or severe level of affect difficulty as a measure of a ‘seventh’ type of disability as demonstrated here provides important and useful information in understanding differing inclusion levels of those experiencing different types and severity of disabilities. the use of existing datasets for uses beyond their original design has cost advantages, but also brings a number of limitations and constraints, primarily related to the fact that the required survey questions are not necessarily the same for each purpose. for example, the domain of healthcare access has only one indicator that can be created from the original dataset, but a tool designed specifically to measure and monitor the progressive realisation of disability inclusion would include more questions related to health, including, for example, whether healthcare treatment received was appropriate and/or resulted in improved or stabilised health conditions, about the affordability and accessibility of healthcare, about the need for and use of assistive devices and carers and so on. whilst the development of the idm followed a participatory process in a number of countries to identify the relevant domains and indicators for measuring deprivation, this process did not focus on the identification of domains and indicators of importance in measuring inclusion by people with disabilities (including those with affect difficulties). a similar participatory process involving people with disabilities identifying and prioritising indicators and domains would be necessary to develop tools that covered a comprehensive set of domains and indicators and could accurately measure and monitor inclusion. this participatory process could also be designed to consider what realistic and useful cut-off points should be applied to determine inclusion or exclusion, both at the indicator and domain levels. finally, such a process could assist in prioritising policy responses, as those seen as most acceptable by people with disabilities could be selected. such a process would by its very nature and its outcomes foster the development of an inclusive society. prioritising policy responses one of the major uses of this baseline, albeit partial, is that it enables the identification of the best and worst outcomes across the measured domains for a range of different sub-groups – whether for men or women, those with no, mild or moderate disability severity and those with no or moderate affect difficulties. domain level results highlight the general areas where levels of inclusion are highest (and where exclusion levels are highest), and the indicator-level data show more detail of the areas that need to be targeted in policy responses. there are several approaches to using the data to design policy responses, each of which results in a different range of domains that may initially be prioritised and targeted. this information could be used by a variety of policymakers, from those within the various levels of government, to those working in the non-government sector and, specifically, those advocating for the progressive realisation of inclusion. one approach is to target those domains closest to reaching an acceptable level of ‘inclusion’ – those individuals falling just below the inclusion cut-offs are targeted to lift them above the cut-off. in poverty reduction strategies, this is often the most straightforward and cheapest strategy but can result in those farthest from the cut-off – those who are the poorest – being left out of the interventions (ravallion 2020). this would mean targeting those domains (and the constituent indicators), where inclusion levels are relatively high, and where the majority of remainder are in the ‘in between’ category. for example, for those with affect difficulties, this would involve targeting improvements initially in the support systems and living conditions domains, whilst for those with disabilities policies would initially target the two domains of living conditions and institutional status. an implication of this strategy is that it is unlikely to dramatically change individuals’ daily experiences – as it would mean that only relatively modest improvements would be achieved for a relatively small number of people and would mean that those who are most excluded would remain highly marginalised, continuing to bear the high costs of this exclusion, in terms of human rights violations and financial outlay. another approach is to target those domains farthest from inclusion – prioritising those domains with either the lowest inclusion levels or those with the highest exclusion levels (or both). for example, if a choice were made to prioritise policy responses in those domains where inclusion levels are lowest, the two domains likely to be prioritised for both disability severity and affect severity would be personal safety and social relationships. policies targeting highest exclusion levels for disability severity would prioritise the domains of education and voice, whilst for affect severity, they would target economic opportunities and contributions and voice. in contrast to the personal safety and social relationships domains, where there are only very small proportions categorised as excluded at the domain level, the voice domain has both relatively low levels of inclusion and some of the highest exclusion levels for men and women of all disability and affect severity classifications, and worse outcomes for men across both disability and affect severity classifications. the education domain has low levels of inclusion for men and women with mild and moderate disabilities, and the highest exclusion levels for these subgroups, outcomes that are considerably worse than for individuals with no disabilities. the aim of targeting the most excluded would be to progressively reduce the more extreme levels of exclusion faced by these groups, although a disincentive to policymakers may be the potentially high costs and effort required to bring those most excluded and least included to the required level of inclusion. another approach to targeting is to prioritise those with disabilities and target those domains where the gap between those with disabilities and those without is largest, and those with disabilities have the worst outcomes. groce and kett (2013) refer to this as the disability and development gap, describing the situation where, when people without disabilities progress in their development, people with disabilities are left behind because of a lack of inclusive policies that ensure necessary accommodation and adaptations for different impairments. for those with disabilities, the two priorities would be the domains of support systems and education, whilst for those with affect difficulties, they would be living conditions and support systems. the focus on inclusive education policies and interventions (as noted in the introduction) can be seen as an attempt to reduce this gap between those with and without disabilities. a unique feature of this dataset is that it includes those with and without functioning and affect disabilities, which improves our understanding of the domains demonstrating an overall lack of inclusion arising from the high levels of poverty and extreme inequality in south africa, and also of those domains where a lack of inclusion is related to disability status. excepting the last approach described above, the selection of policy responses to improve inclusion requires an explicit decision from policymakers about whether to specifically target policy responses to those with functioning disabilities and affect difficulties, or to develop policies aimed at the whole population, for example, where universally poor outcomes are achieved. even where policymakers aim to increase inclusion across the whole population, different policy responses for different groups may be required to achieve better, more inclusive outcomes amongst people with functioning disabilities and affect difficulties. developing such targeted responses for different groups and achieving better outcomes for everyone result in a greater equality of opportunities for all. being able to disaggregate the data beyond disability or affect severity classifications, for example by gender as has been done in this analysis, has the potential to facilitate even more targeted approaches. these more highly disaggregated data can identify where different responses could be developed where the outcomes of the subgroups differ. for example, there are important differences in the outcomes of men and women in the domains of economic opportunities and contributions and personal safety for those with functioning and affect disabilities, in the institutional status domain for those with mild functioning disabilities, and in the voice domain for those with moderate functioning disabilities. as can be seen, the domains that are prioritised for targeting are different depending on the choice of policy response approach, a choice which should be made explicitly, and which would strongly benefit from a process of consultation between people with disabilities and policymakers to maximise the effectiveness of responses made. conclusion following the proof of concept presented in schneider & suich (2021), this article presents a baseline for disability inclusion using data from the idm survey in south africa, which could be used in future for monitoring the progressive realisation of disability inclusion within the country, although the data collection tools would benefit from improvements to increase their specificity and relevance to disability inclusion. these results indicate that inclusion levels decline with increasing disability severity and that those with functioning difficulties face greater differences in inclusion levels than those with affect difficulties. this baseline enables those domains with high, in between or low levels of inclusion and those indicators with high, in between and low levels of exclusion for people with no, mild or moderate disabilities, and people with no or moderate affect difficulties to be highlighted. these results can be used to inform the prioritisation of policy interventions – whether by government or disability support organisations – to improve levels of inclusion for people with disabilities and demonstrate that the targeted domains would differ significantly depending on the approach selected. the final decision on priority targets will benefit from a consultation process involving people with disabilities and all relevant policymakers, a process which would also ideally inform the design of data collection tools specifically for the measurement and monitoring of disability inclusion. acknowledgements the 2016–2020 individual deprivation measure (idm) programme was a partnership amongst the australian national university (anu), the international women’s development agency (iwda) and the australian government, through the department of foreign affairs and trade. thanks to ikapadata pty ltd. who undertook the idm data collection in south africa, to all the fieldworkers who helped make the data collection such a success, and to the anu idm team of sharon bessell, janet hunt, trang pham and mandy yap. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions h.s. and m.s. conceived of the presented idea and developed the theory. h.s. performed the computations. h.s. and m.s. discussed the results and contributed to the final manuscript. funding information the dataset used was collected as part of the idm programme, which was funded by the australian department of foreign affairs and 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https://www.washingtongroup-disability.com/wp-content/uploads/2016/01/wg_extended_question_set_on_functioning.pdf. wgds, u.d., the washington group on disability statistics short set on functioning, washington group on disability statistics, washington, dc, viewed 19 december 2020, from https://www.washingtongroup-disability.com/question-sets/wg-short-set-on-functioning-wg-ss/. yoshida, k. & bartel, a., 2020, tableone: create ‘table 1’ to describe baseline characteristics with or without propensity score weights. r package version 0.12.0, viewed 26 may 2021, from https://cran.r-project.org/package=tableone. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) tsega h. mirach department of health systems and policy, college of medicine and health sciences, university of gondar, gondar, ethiopia rosemary m. lysaght school of rehabilitation therapy, queen’s university, kingston, canada molalign b. adugna department of sociology, college of social sciences and humanities, the university of gondar, gondar, ethiopia abebe a. alemu faculty of law, queen’s university, kingston, canada meseret h. ayele faculty of education, queen’s university, kingston, canada sewbesew y. tilahun department of psychiatry, college of medicine and health sciences, university of gondar, gondar, ethiopia tewelde g. adhanom department of gender and development studies, college of social sciences and humanities, university of gondar, gondar, ethiopia citation mirach, t.h., lysaght, r.m., adugna, m.b., alemu, a.a., ayele m.h., tilahun, s.y. et al., 2025, ‘job satisfaction among people with disabilities in ethiopia: a cross-sectional survey’, african journal of disability 14(0), a1660. https://doi.org/10.4102/ajod.v14i0.1660 note: additional supporting information may be found in the online version of this article as online appendix 1. original research job satisfaction among people with disabilities in ethiopia: a cross-sectional survey tsega h. mirach, rosemary m. lysaght, molalign b. adugna, abebe a. alemu, meseret h. ayele, sewbesew y. tilahun, tewelde g. adhanom received: 12 jan. 2025; accepted: 09 may 2025; published: 08 july 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: job satisfaction among people with disabilities (pwds) is a significant concern because of its impact on productivity, job retention and well-being in the workplace. objectives: this study aimed to assess the job satisfaction of employees with disabilities in ethiopia and to identify key factors influencing job satisfaction. method: a cross-sectional survey was conducted with 784 ethiopian government employees with various disabilities. all interviews were conducted in 2021.the survey was designed to collect key socio-demographic information, and factors related to job satisfaction. results: the majority of respondents had motor difficulties (59%), followed by visual impairments (36.7%). the mean age was 33 years, and 67% were male. over half of the study participants were first-degree holders, and 80.6% had experienced integrated education. the mean time to secure a job was 15.41 months, with over 18% unemployed for 6–12 months. job dissatisfaction was influenced by factors such as low salary, gender, service years and lack of personal assistance. vision impairment correlated with higher dissatisfaction. overall, around 32.5% reported satisfaction in their job, 44.1% were neutral and 23.4% were dissatisfied. dissatisfaction rose to 29% when measured using supplementary questions. conclusion: the study was the first to examine factors leading to job satisfaction of employees with disabilities in the ethiopian public sector. recommendations include social policy adjustments for better working conditions, considering central factors associated with dissatisfaction. the government should explore measures such as employment quotas or wage supplementation to address disparities and ensure reasonable accommodation. inclusive research methods will assist in leading change. contribution: this research contributes nuanced insights into the factors affecting job satisfaction and its complexities among employees with disabilities in the ethiopian context, emphasising the need for ongoing research to improve worker support structures and inclusive practices in job acquisition and employment. keywords: disability studies; cross-sectional survey; job satisfaction; people with disabilities; higher education graduates; ethiopia. introduction people with disabilities (pwds) are individuals with long-term physical, mental, intellectual or sensory disabilities that may hinder their full and effective participation in society (un 2006). these disabilities can be acquired at birth, through accidents or illness, or as a result of the natural ageing process. according to the world health organization (who), over 1 billion people are living with some form of disability, making up about 15% of the world’s population. the world report on disability estimated that there were 15 million persons with disabilities in ethiopia, representing 17.6% of the population (who 2011). the vast majority of them live in rural areas where access to basic services is limited (eide & ingstad 2011). employees with disabilities represent an underutilised human resource for organisations. people with disabilities have on average lower levels of employment, job security, income, pay satisfaction, job satisfaction and overall quality of work life, than people without disabilities (world bank 2019). these disparities exist despite evidence that demonstrates no significant performance and productivity differences between pwds and those without disabilities (bonaccio et al. 2020; lengnick-hall, gaunt & kulkarni 2008). recent research shows that job satisfaction among pwds in ethiopia is a growing concern (bitew 2023). studies have shown that job satisfaction is a predictor of productivity and retention in the workforce (baart, schippers & meta 2019); however, there is evidence that workers with disabilities feel unsupported by their employers, and that this perception is associated with low commitment to the organisation (bitew 2023). broader quality of life-focused studies (abate & mekonnen 2021; krupa et al. 2022) have also identified challenges faced by pwds in employment, identifying a need for more specific research on job satisfaction in this population. international studies on job satisfaction in employees with disabilities have examined a number of factors related to job satisfaction, generally revealing lower levels of job satisfaction when compared with non-disabled employees. these studies attribute such differences primarily to social factors (e.g. level of job flexibility, social relations with co-workers, workplace discrimination) and pay differentials (keating et al. 2022; romeo, yepes-baldó & lins 2020; schur et al. 2017; shier, graham & jones 2009). understanding the factors contributing to job satisfaction in this population can inform policies and interventions aimed at improving their employment outcomes and overall well-being and open the door to increased engagement of pwds in the labour pool (saleh & bruyère 2018). there is a lack of published data on job satisfaction among the working population of pwds in ethiopia. the ethiopian government has enacted and implemented various laws, policies and standards to support pwds, including their right to productive and decent work (melles & korpinen 2009; sida 2014). however, an estimated 95% of ethiopians with disabilities live in poverty (sida 2014). it is important to recognise that pwds can and want to be productive members of society. promoting more inclusive societies and employment opportunities for pwds requires improved access to basic education, vocational training relevant to labour market needs and jobs suited to their skills, interests and abilities, with adaptations as needed (trezzini et al. 2021). many societies are also recognising the need to dismantle other barriers – making the physical environment more accessible, providing information in a variety of formats and challenging attitudes and mistaken assumptions related to disability (bickenbach 2011; naami 2015; shaw et al. 2022). people with disabilities face various challenges in gaining and maintaining employment, including discrimination, access barriers and lack of accommodation (morwane, dada & bornman 2021), which has potential to impact their job satisfaction. this article aims to explore the factors affecting job satisfaction among pwds in ethiopia and the coping strategies that policy makers and organisations can adopt to improve it. research methods and design study design and study setting this study adopted a cross-sectional research design by employing semi-structured questionnaires (creswell & creswell 2022). the study covered oromia, amhara, southern nations and nationalities people (snnpr), and addis ababa city administration. study population and sampling strategy the study focused on three disability categories: physical disability, visual disability and hearing impairments, constituting 83.6% of the total population of pwds in ethiopia (jica 2002). the sample included pwd in these categories who were graduates of higher education institution (heis), and employed in the civil service. only those who graduated in the previous 5 years were included to minimise recall bias. the sample size was calculated using the cochran, mosteller and tukey (2006) formula with a 95% confidence interval (ci), ±5% precision level, 50% prevalence, a design effect of 2 and a 5% non-response rate. the target sample size was calculated to be 807 study participants. a multi-stage cluster sampling approach was employed, incorporating probability and non-probability sampling. simple random sampling was used to sequentially select primary units, starting from higher administrative levels, such as government ministries, and then moving to more localised levels, such as regional bureaus, zonal administrations and districts. from within the selected ministerial districts, systematic random sampling was used to draw the required number of participants proportionate to district size. data collection this study employed a structured questionnaire to gather data on factors affecting job satisfaction among employees with disabilities, including demographic details, employment characteristics and satisfaction levels (online appendix 1). the demographic variables included age, gender, type and onset of disability, presence of personal assistance at home, marital status, educational status and graduation year. employment characteristics were work history/experience, monthly gross salary and current employer. to assess job satisfaction, the macdonald and macintyre (1997) job satisfaction scale was used. this scale uses a likert-scale to categorise responses into five levels: very dissatisfied, dissatisfied, neither satisfied nor dissatisfied, satisfied and very satisfied. the questionnaire was translated into amharic, and 30 trained interviewers conducted the study. two days of training covered interview conduct, participant rights and ethical considerations. to enhance the reliability of the study, the questionnaire was pilot-tested over 3 days in areas not included in the actual study. necessary modifications were made based on the pilot results to ensure clarity and consistency in the questions. in addition, internal consistency of the questionnaire was assessed using cronbach’s alpha to measure the reliability of the scales used. cronbach’s alpha to job satisfaction scale was found to be 0.805. data were electronically entered into kobo software by the interviewers. all interviews were conducted during 2021. data analysis quantitative data were cleaned using standard approaches within the kobo program. descriptive statistics and inferential analysis were employed, including ordinal logistic regression using stata 14. job satisfaction scales were interpreted as: 42–50/very satisfied; 39–41/satisfied; 32–38/neither satisfied nor dissatisfied; 27–31/dissatisfied and 10–26/very dissatisfied according to the recommended scoring procedure. ordinal logistic regression analysis assessed associations between independent variables and the dependent variable. the stata brant was used to test the overall model’s proportional odds (po) assumptions and each predictor. the generalised ordered logit model (gologit2) with partial po was employed to allow for greater model flexibility by relaxing the po assumption. analyses were conducted using the gologit2 command in stata. in this study, satisfaction was measured on a five-level ordinal scale, requiring the use of four logit models. the logit effects of each variable were therefore determined across four models. within each model the probability of being in a higher category (‘satisfied’) as opposed to a lower (‘dissatisfied’) category was determined. the comparisons of satisfaction level for each set of categories were calculated as follows: model 1 contrasts satisfaction levels 2, 3, 4 and 5 against level 1. model 2 compares levels 3, 4 and 5 with levels 1 and 2. in model 3, satisfaction levels 4 and 5 were analysed in relation to levels 1, 2 and 3. finally, model 4 focused on satisfaction level 5 and compared it to levels 1 through 4. hence, odds ratios (or) greater than 1 indicate that higher values of the explanatory variable increase the likelihood of the respondent being at a high satisfaction level, whereas or less than 1 indicate that higher values of the explanatory variable decrease the likelihood of the respondent being at a high satisfaction level. depending on the comparison step, how the effect size of the explanatory variable changed could be confirmed. the level of significance, or α, was set at 0.05 for all statistical tests. ethical considerations ethical clearance was obtained from the university of gondar institutional review board (v/p/rcs/2248/2020) and (grhbs-138-20 traq36030188). verbal consent was obtained from each participant, and sign language interpretation was used to communicate with participants with hearing disabilities. data collection ensured privacy and confidentiality, utilising secure cloud-based storage for quantitative data and a virtual secure folder for data. results socio-demographic characteristics of respondents the sample comprised a mix of backgrounds, with 44% having been raised in urban areas, almost 37% in rural areas and almost one-fifth reporting they had been raised in both settings. ages ranged from 21 to 62 with a median age of 33 (standard deviation of 8.3 years). the sample was dominated by male respondents, who comprised close to 70% of the sample. most were married and 41% of participants lived with their spouse and children. almost 20% lived alone. fewer than half of respondents were receiving personal assistance at home. almost one-third of the sample received government financial assistance. types and levels of disabilities while the sample included people with motor, visual and hearing impairments, the greatest proportion reported motor impairment (59.2%) as their primary source of disability, and 30% did not require mobility aids. about 26% of the sample reported the use of mobility aids (such as braces, prosthetic devices and crutches), and just 4% were wheelchair users. the next most prevalent group was those with visual impairments (close to 40% of the sample) and 27% reported total blindness. only about 4% of the sample had hearing impairment, with half reporting total deafness. just 0.6% of study participants reported more than one type of impairment (see table 1). table 1: types and level of disability as reported by participants. just 11% of the reported impairments were congenital, with most having acquired a disability after birth. most sources of disease or illness resulting in disability were ‘unspecified’. most accidents had occurred in the home or residential area (23.6%), but other sources included war or conflict and motor vehicle accidents. a total of 23% were unaware of the source of their impairment. history and current educational status of participants most participants, 70.5% from first cycle and 80.6% from the second cycle of education, had received their basic education in integrated/inclusive schools. only 17.3% in the first cycle and 10.6% in the second cycle received their education in boarding schools. few participants, even 9.8% in the first cycle and 5.9% in the second cycle had attended special schools or classes. for a small number of participants, 2.3% and 2.9%, the impairments were sustained after firstand second-cycle education had been completed. in terms of higher education, 25% of the sample had received a diploma, while just over half of these were earned in private institutions. about two-thirds (67.7%) of the sample had obtained first-degrees, and the majority of these had been earned in government-run institutions. only 6.9% held a master’s degree, with 87% of those having been earned in government institutions. job acquisition, tenure and earnings over half of the participants (56.1%) had been unemployed for more than 3 months before securing their current job, with 21.0% unemployed for less than 6 months and 13% for more than 18 months. the average unemployment duration was 15.41 months (95% ci: 13.57–17.25). while 58.5% of employees stayed at their first job, 8.8% had worked at over three organisations. key reasons for leaving previous jobs included salary dissatisfaction (4.7%), discrimination (2.0%) and inadequate disability accommodation (2.0%). median work experience was 5.0–6.5 years; 33.2% had less than 3 years, and 24.1% had over 9 years. most employees (59.3%) worked at district or woreda-level organisations, with a median monthly salary of 6073 birr (220.8 usd); salaries ranged from 1 585 birr (57.6 usd) to 76 625 birr (2786.4 usd). job satisfaction of respondents respondents were asked to choose from a likert-scale (very satisfied to very dissatisfied) their level of satisfaction with their current employment. overall, 32.5% indicated that they were satisfied or very satisfied, and another 44.1% selected the middle of the scale, leaving 23.4% dissatisfied or very dissatisfied (figure 1). figure 1: reported job satisfaction level of respondents. generalised ordinal logistic regression of predictors to job satisfaction levels a partially constrained generalised ordinal logistic model was fitted to estimate the ordinal outcome variable ‘job satisfaction level’ from a set of predictor variables that included age, gender, types of impairment, first occurrence of the impairment and presence of personal assistance at home, monthly gross salary, marital status, working experience, graduation year, educational status and current employers. the results of this analysis are shown in the tables further in the text, organised by level of job satisfaction. statistically significant findings by category are discussed further in the text. effect of predictors on ‘very dissatisfied’ job satisfaction levels for employees who reported being very dissatisfied with their work, the odds of being in a higher satisfaction category were 5.04 times greater (95% ci: 1.51–16.76) for those earning more than 8000 etb compared to those earning less than 4000 etb (see table 2). table 2: generalised ordinal logistic regression outputs showing the effect of predictors on job satisfaction level. while not technically reaching the level of significance, respondents with more than one impairment were much less likely than those with vision impairment or any other single impairment (hearing, motor) to be satisfied in their work. no other variable type produced odds differences at significant levels. effect of predictors on ‘dissatisfied’ job satisfaction levels in this second model, salary was also a significant determinant of higher level job satisfaction. the odds of being in the higher order category of satisfaction level for employees who were paid between 4000 and 6000 and more than 8000 etb were 1.82 (95% ci: 1.11–2.96) and 4.11 (95% ci: 2.17–7.77) times higher than those who were paid less than 4000 etb, respectively (see table 2). the odds of being in the higher order category of satisfaction level for people having motor difficulties were 2.07 (95% ci: 1.43–2.99) times higher than for people with visual impairment. the odds of being in the higher order category of satisfaction level for people who graduated between 2000 and 2005 were 0.40 (95% ci: 0.21–0.79) times less than for those who graduated before 2000. the effect of predictors on ‘neither satisfied nor dissatisfied’ job satisfaction levels in this category, gender, type of impairment, availability of personal assistance at home, education level, date of graduation, level of government office employees were employed in and salary were all significant determinants of satisfaction. the odds of being in the higher order category of satisfaction level for females were 0.66 (95% ci: 0.46–0.94) times less likely than for males when keeping the other variables constant. the odds of being in the higher order category of satisfaction level for people having motor difficulties were 2.48 (95% ci: 1.59–3.90) times higher than for people with visual impairment when keeping the other variables constant. the odds of people that did not have personal assistance at home were 0.53 (95% ci: 0.35–0.80) times less likely than their counterparts (see table 2). the odds of people having a first degree were 1.93 (95% ci: 1.04–3.58) times higher than diploma holders. the odds of being in the higher order category of satisfaction level for people graduated between 2000 and 2005 and 2010 to 2013 were 0.35 (95% ci: 0.18–0.68) and 0.40 (95% ci: 0.18–0.90) times less than for those graduated before 2000. the odds of being in the higher order category of satisfaction level for people working in regional/aa city administrations were 2.10 (95% ci: 1.36–3.23) times higher than for those people working at district/woreda levels. people who paid a gross monthly salary of 4000–6000 etb, 6000–8000 etb and ≥ 8000 etb had odds that were 1.98 (95% ci: 1.21–3.25), 2.13 (95% ci: 1.29–3.51) and 3.963 (95% ci: 2.41–6.52) times higher than those who paid less than 4000 etb. effect of predictors on ‘satisfied’ job satisfaction levels in this fourth model, the odds of being in the higher order category of satisfaction level were significantly related to sex/gender, disability type, availability of personal assistance at home and number of working years. for females, the odds of higher levels of satisfaction were 0.24 (95% ci: 0.07–0.79) times less likely than for males. the odds of being in a higher category of satisfaction level for individuals with motor difficulties were 5.81 times higher (95% ci: 2.062–16.388) than for those with visual impairments (see table 2). the odds of being in the higher order category of satisfaction level for people who did not have personal assistance at home were 0.37 (95% ci: 0.16–0.85) times less likely than their counterparts. the odds of being in the higher order category of satisfaction level for people who have been working more than 9 years were 0.18 (95% ci: 0.05–0.67) times less likely than for those working less than 3 years, respectively. discussion the types and levels of disabilities observed in the study shed light on the diverse challenges faced by individuals with disabilities related to employment. employees with motor difficulty dominated the sample, and notably, a substantial proportion of participants with motor difficulty did not require mobility aids, which may suggest that people with less severe impairments are most likely to be hired into public sector jobs. the predominance of males in the sample (almost 70% compared with 30% females) was higher than the proportion of males in the general labour market, where data show that 69% of adult males are employed, compared with 50.2% of females (a factor of 1.4) (ethiopian statistical service [ess] 2021). the gender breakdown in our sample reflects the proportion of males and females with disabilities who are working in the public sector; this suggests that gender may be a negative factor for hiring of disabled women (afb 2023). national data support our findings, given that women with disabilities have somewhat higher rates of unemployment compared with men in both urban and rural areas (ess 2021). the educational attainment of participants varied, with a significant proportion holding first-degrees. the dominance of government-run educational institutions in providing education to participants, especially for first-degrees, indicates the role of public institutions in shaping the educational landscape for individuals with disabilities, and might serve as a site for intervention. various factors can influence employee satisfaction. interestingly, a significant proportion of participants exhibited ambivalent attitudes towards their job satisfaction, with the majority reporting a neutral stance – neither satisfied nor dissatisfied. this lack of clearly defined attitudes should not be dismissed outright, as there may be disability-related and other social factors contributing to this ambivalence. for example, a korean study showed that job satisfaction was higher for women than men, likely because their expectations were lower; however, job satisfaction was lower in more highly educated women, a fact the researchers attributed to higher job expectations in this group (yu & choe 2021). digging deeper, job satisfaction among participants emerged as a complex phenomenon. overall, a considerable proportion expressed dissatisfaction with their employment, indicating potential challenges in the work environment. the ordinal logistic regression models provided valuable insights into the factors influencing different levels of job satisfaction. monthly gross salary emerged as a significant predictor across multiple satisfaction levels, with higher salaries associated with greater satisfaction. this finding underscores income level as a crucial determinant of job satisfaction among individuals with disabilities. the presence of motor difficulties was consistently associated with higher dissatisfaction levels, indicating the unique challenges faced by this subgroup in the workplace. additionally, the educational status of participants played a role, with lower satisfaction levels observed among those with first-degrees, especially those who graduated between 2000 and 2005. this finding suggests potential disparities in employment opportunities or attention to workplace accommodations for individuals with disabilities based on their educational background. overall, about 32.5% of participants expressed satisfaction with their jobs compared to those experiencing dissatisfaction (23.4%). according to a report by the danish national centre for social research, pwds in that country are just as satisfied with their working conditions as people without disabilities and tend to express high levels of job satisfaction overall, although they have a lower sense of job security (hansen & nielsen 2008). it is encouraging in the danish study to see that some pwds are expressing high levels of job satisfaction; however, this finding contradicts other research that highlights a lack of appropriate workplace accommodation for employees with disabilities and associated worker dissatisfaction (hansen & nielsen 2008). the discrepancy raises questions about the expected link between the absence of such accommodation and job dissatisfaction. the reasons behind some employees with disabilities reporting satisfaction without accommodations and others remaining dissatisfied despite receiving accommodations are not clear, underscoring the complexity of factors influencing job satisfaction (pagan & malo 2021). however, it is notable that only 16.7% of this sample reported being highly satisfied with their jobs. this contrasts with the 44.3% of employees with disabilities in an american survey who reported being highly satisfied with their jobs (sundar et al. 2018). the reported dissatisfaction among 24% of our participants is also of note, suggesting that employees with disabilities may experience dissatisfaction for various reasons. several additional factors were identified as significantly influencing their job satisfaction or dissatisfaction. these factors include the proximity of workplaces, gender, type of impairment and salary. those working in addis ababa and regional offices reported higher satisfaction levels, possibly because of the greater accommodation availability in urban areas. this finding underscores the existing gap in accessibility between rural and urban areas, contrary to the government’s commitment expressed through the ratification of the convention on the rights of people with disabilities (crpd) (un, 2006). our study found that women employees with vision impairments reported lower satisfaction levels. these findings echo results of a literature review conducted by the american foundation for the blind (afb), where women with disabilities were less likely to receive accommodations and had lower levels of higher education achievement, contributing to reduced success and job satisfaction (afb 2023). the challenges faced by persons with vision impairment in our sample are also consistent with the findings of a norwegian study, which found that people with visual impairments had lower employment rates than the general population. however, employed participants had lower levels of depression and higher levels of life satisfaction compared to other non-disabled employees. brunes and heir (2022) suggested that employment plays an important role in general well-being, even if job satisfaction is not always high. salary emerged as a crucial factor affecting job satisfaction. this resonates with other research, which revealed that a higher salary is critical for employees with disabilities to offset the additional living costs associated with disability (banks et al. 2022). a study by baumgärtner et al. (2015) found that employees with disabilities are less satisfied than their colleagues without disabilities in highly centralised environments. the study found that a decentralised organisational context relates to higher job satisfaction levels for all employees, especially for those having a disability. overall, it is apparent that measures that have been put in place to ensure equitable opportunities in education and employment fall short of creating meaningful and satisfying jobs for many aspiring employees with disabilities. past research has demonstrated that social barriers to employment of employees with physical disabilities, including stigma and negative attitudes, are just as important as addressing physical barriers (padkapayeva et al. 2017) and this is consistent with the current study. recent studies have also pointed to the need for solutions to occur at multiple levels. it is insufficient to assume that greater government intervention will lead to better outcomes. as shaw et al. (2022) concluded relative to their qualitative evaluation of one programme developed to enhance employment outcomes in developing countries, including three african countries, policy makers and planners must engage pwds in ‘deeper problem analysis’ if they wish to advance a broader approach to the issue and create better opportunities for decent and meaningful work across a range of workplaces. there is evidence in the international literature that greater responsiveness to the accommodation needs of employees with disabilities can improve job satisfaction for those employees and aid in retention (padkapayeva et al. 2017; varekamp et al. 2011). this may be an important future direction for research and development in the ethiopian context. strengths and limitations the study’s strengths include its comprehensive exploration of socio-demographic characteristics, types of disabilities, educational backgrounds and job satisfaction among individuals with disabilities through an interdisciplinary research team. however, certain limitations should be acknowledged, including reliance on self-reported data and the potential for recall bias of the study participants. another limitation of the study is the exclusion of the tigray region because of the ongoing conflict. because the study identified many interesting correlations for which specific predictor variables were not included, additional study of accommodation factors in each of the populations studied and their relationship to job satisfaction would be warranted. conclusion the present study is the first to systematically examine the job satisfaction of pwd in ethiopia. the study was conducted in major regions, including the capital city, addis ababa. several implications can be drawn from this study. around one-third of the respondents reported dissatisfaction with their current employment conditions. factors such as being male, having a motor impairment, having a high level of education, having a better salary, having personal assistance at home and working for the federal government or regional government and addis ababa city administration were significantly associated with better job satisfaction. hence, the government, which was the employer in this study, needs to consider some social policy adjustments to improve the adverse conditions faced by employees with disabilities, particularly disabled women and persons with visual impairment. this might include a mandatory employment quota system or wage supplementation. implications and recommendations in this study, monthly gross salary emerged as a crucial predictor, emphasising the importance of compensation as a salient factor to be addressed. a motor difficulty was consistently linked to higher dissatisfaction, necessitating targeted support. gender disparities, particularly for women with disabilities, require attention in accommodation rates and education. promoting employees with disabilities to leadership roles could serve as a benefit to both the employees themselves and their workplace. to address dissatisfaction concerns, employers should ensure competitive salaries, targeted support for motor difficulties, and foster a decentralised, inclusive work environment, potentially retaining valuable employees with disabilities. ethiopian policy makers should work in partnership with persons with disabilities to consider meaningful strategies for improving access to a broad range of meaningful jobs that support employees’ employment goals. future research could delve deeper into specific workplace accommodations and interventions that contribute to higher job satisfaction among individuals with disabilities. acknowledgements the authors acknowledge the research participants and researchers who supported and contributed to this study. competing interests the authors reported that they received funding from the mastercard foundation (mcf) which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions t.h.m. and r.m.l. contributed to the conceptualization. t.h.m. contributed to the drafting and revising the manuscript critically for intellectual content. t.h.m. and r.m.l. ensured the integrity and accuracy of the work. all authors approved the final version to be published. funding information the mastercard foundation (mcf) scholar’s program, university of gondar (ethiopia) and queen’s university (canada). data availability the supporting data for the research are available from the corresponding author, t.h.m., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of 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world health organization, geneva, viewed 30 october 2024, from https://iris.who.int/bitstream/handle/10665/44575/9789240685215_eng.pdf?sequence=1. world bank (2019). skills and workforce development, viewed 13 june 2025, from https://www.worldbank.org/en/topic/skillsdevelopment. yu, s. & choe, c., 2021, ‘gender differences in job satisfaction among disabled workers’, plos one 16(6), e0252270. https://doi.org/10.1371/journal.pone.0252270 article information authors: surona visagie1 elsje scheffler2 marguerite schneider3 affiliations: 1centre for rehabilitation studies, stellenbosch university, south africa2dare consult, stellenbosch, south africa 3department of psychiatry and mental health, university of cape town, south africa correspondence to: surona visagie postal address: po box 40, fraserburg 6960, south africa dates: received: 28 mar. 2013 accepted: 30 may 2013 published: 06 sept. 2013 republished: 09 sept. 2013 how to cite this article: visagie, s., scheffler, e. & schneider, m., 2013, ‘policy implementation in wheelchair service delivery in a rural south african setting’, african journal of disability 2(1), art. #63, 9 pages. http://dx.doi.org/10.4102/ ajod.v2i1.63 note: this article was republished with the corrected affiliation of the second author. copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. policy implementation in wheelchair service delivery in a rural south african setting in this original research... open access • abstract • introduction    • local and international policy    • policy implementation • research method and design • results    • service step 1: referral and appointment    • service step 2: assessment    • service step 3: prescription    • service step 4: funding and ordering    • service step 5: product preparation    • service step 6: fitting    • service step 7: user training    • service step 8       • follow up       • maintenance and repairs • discussion    • interaction between service steps    • the major factors limiting policy implementation and a rights-based approach • ethical considerations • trustworthiness • limitations • recommendations • conclusion • acknowledgements    • funding support    • competing interests    • author contributions • references abstract top ↑ background: wheelchairs allow users to realise basic human rights and improved quality of life. south african and international documents guide rehabilitation service delivery and thus the provision of wheelchairs. evidence indicates that rehabilitation policy implementation gaps exist in rural south africa. objectives: the aim of this article was to explore the extent to which wheelchair service delivery in a rural, remote area of south africa was aligned with the south african national guidelines on provision of assistive devices, the united nations convention on the rights of persons with disabilities and the world health organization guidelines on provision of wheelchairs in less-resourced settings. method: qualitative methods were used. data were collected through semi-structured interviews with 22 participants who were identified through purposive sampling. content analysis of data was preformed around the construct of wheelchair service delivery. results: study findings identified gaps between the guiding documents and wheelchair service delivery. areas where gaps were identified included service aspects such as referral, assessment, prescription, user and provider training, follow up, maintenance and repair as well as management aspects such as staff support, budget and monitoring. positive findings related to individual assessments, enthusiastic and caring staff and the provision of wheelchairs at no cost. conclusion: the gaps in policy implementation can have a negative impact on users and the service provider. inappropriate or no wheelchairs limit user function, participation and quality of life. in addition, an inappropriate wheelchair will have a shorter lifespan, requiring frequent repairs and replacements with cost implications for the service provider. introduction top ↑ the provision of assistive devices to compensate for loss of function is an essential part of rehabilitation (united nations [un] 2006a). a wheelchair, defined as ‘a device providing wheeled mobility and seating support for a person with difficulty in walking or moving around’, is one such assistive device (world health organization [who] 2008:11). functionality in a wheelchair relies on the interaction between the user, the wheelchair, the environment and the activity performed (routhier et al. 2003). wheelchair provision in rural areas must, therefore, take into account the uneven terrain, lack of paved roads and sidewalks, eroded paths, small houses and narrow doors often found in these settings (eldar 2001). in addition, transport services are often limited in low-resourced settings and wheelchairs become the primary mode of mobility (schoenberg & coward 1998; who 2008). the who takes into consideration such contextual variables and defines an appropriate wheelchair as one that: [m]eets the user’s needs and environmental conditions; provides proper fit and postural support; is safe and durable, and can be obtained and maintained and services sustained in the country at the most economical and affordable price. (who 2008:11) an appropriate wheelchair plays a key role in enhancing quality of life of the user as it can assist with the realisation of basic human rights such as access to health care and education, economic self-sufficiency and participation in community and social life (borg, lindstrom & larsson 2009; department of health [doh] 2003; greer, brasure & wilt 2012; un 2006b; who 2008). furthermore, literature associates a correctly-prescribed wheelchair with improved function and healthcare benefits through the prevention of secondary complications (doh 2003; un 2006b). provision of appropriate wheelchairs should thus be one of the priorities of a rehabilitation programme. the aim of this article is to explore the extent to which wheelchair service delivery in the study setting is aligned with national policy, the united nations convention on the rights of persons with disabilities (uncrpd) (articles 4, 20 and 26) (un 2006b) and the who guidelines on provision of wheelchairs in less-resourced settings (who guidelines) (who 2008). the experiences of public-sector healthcare users and service providers with regards to wheelchair services in a remote, rural district in the northern cape province of south africa are described, as 80% of the south african population relies on government subsidised healthcare services (blecher et al. 2011). these experiences were then used to further determine if there were gaps in policy implementation. whereas the limited provision of rehabilitation services in remote, rural settings is generally acknowledged (bateman 2012), analysis and documentation of the gap between policy and implementation in specific areas of service provision is lacking and this article aims to add to that evidence base. local and international policy the south african (sa) national rehabilitation policy (nrp) (doh 2000) guides general rehabilitation services in south africa, whilst the south african national guidelines on provision of assistive devices (sa national guidelines) stipulate key responsibilities and requirements with regard to the provision of assistive devices in the public-health sector in south africa (doh 2003). both of these documents promote a user-centric approach and highlight important programme-management elements such as training of staff, budgeting and monitoring and evaluation. in addition, the sa national guidelines include specific protocols with regard to key service steps in the provision of wheelchairs and other assistive devices.the uncrpd (un 2006b) promotes a rights-based approach to service delivery. with reference to assistive technology, article 4 seconds the who definition of an appropriate wheelchair by promoting the development of appropriate devices and technology, training of staff and the dissemination of information on assistive technology to users. article 20 promotes personal mobility through service delivery, provision of quality devices and user training. rehabilitation service-management aspects are covered in article 26 and the need for dedicated rehabilitation programmes, capacity building of staff and provision of assistive devices are outlined (un 2006b). the who guidelines (who 2008) outline eight service steps that form the basis of a comprehensive wheelchair service. in addition, the who guidelines include minimum standards for each step. these service steps and minimum standards are based on international evidence-based practice and research (greer et al. 2012; who 2008). the service steps are: (1) referral and appointment; (2) assessment; (3) prescription; (4) funding and ordering; (5) product preparation; (6) fitting; (7) user training; and (8) follow up, maintenance and repairs. (as ‘follow up’ includes multiple factors in addition to technical aspects, it will be discussed separately [a] from ‘maintenance and repairs’ [b]). the sa national guidelines (doh 2003) include most of the service steps outlined in the who guidelines (who 2008), but there is limited clinical focus and scope and there are limited standards for each service step. for example, the main clinical focus in the service steps relating to assessment, prescription and fitting is that they must be performed by appropriately-trained staff. no specific clinical requirements are given. the following service steps are not included in the sa national guidelines (doh 2003): • referral and appointment. • product preparation. • follow up. despite the differences between the documents, the sa national guidelines can, in principle, be aligned with the who guidelines. policy implementation according to lang et al. (2011), the successful implementation of international policy in individual countries depends on country-level policy that directs implementation, political will and adequate government structures to facilitate implementation. south africa has country-level policy in the form of the nrp (doh 2000) and the sa national guidelines (doh 2003), which predate both the uncrpd and the who guidelines. in addition, south africa ratified and signed the uncrpd in 2007, thus voluntarily committing itself to act on the articles of the convention. together, these policies and the ratification of the uncrpd should provide a sound foundation for the implementation of the international documents. however, it is documented that rehabilitation service provision is inadequate in rural south africa despite the presence of these policies and guidelines (bateman 2012). what is unclear is to what extent local and international policy are implemented with regard to wheelchair service delivery in rural south africa. research method and design top ↑ information presented in this article was gathered during a larger study entitled ‘enabling universal and equitable access to health care for vulnerable people in resource poor settings’ (equitable 2008). the equitable study explored access to healthcare by people seen as vulnerable in four sites in each of four african countries. south africa was one of those countries and, within south africa, fraserburg, the site on which this article is based, was one of the sites. the interviews conducted for the article formed part of the qualitative phase of the equitable project. a descriptive, inductive design was used to gain an in-depth understanding of the situation with regards to healthcare access in the study community (equitable 2008).data were collected in the town of fraserburg, a geographic service area (gsa) in the northern cape province of south africa. fraserburg and the northern cape province have ‘limited financial, human and infrastructural resources to provide wheelchairs’ (who 2008:2). the gsa spans 10 000 km2 and is sparsely populated (an average of three persons per km2). this area has an expanded unemployment rate of 40% – 60%, including unemployed persons who are not looking for employment (gaffneys local government in south africa 2008). the transport infrastructure is poor with mostly gravel roads, footpaths and no public transport. in the low-income part of town, housing is most often a twoor three-roomed dwelling with narrow doors and stairs, unpaved yards, often with loose gravel surfaces and no access roads or paths. healthcare services are nurse-driven and are provided at a community health care centre (chcc). doctors and therapists from the nearest secondary hospital, 200 km away, provide outreach services at the chcc once a week. a heterogeneous group of 22 study participants was recruited purposively from the fraserburg general population and healthcare service providers in the gsa. purposive sampling was used in order to ensure that participants who could shed the most light on healthcare access were interviewed (domholdt 2005). furthermore, participants were chosen so as to represent a heterogenic group with maximum variability in characteristics that might lead to different experiences and views on healthcare access (domholdt 2005). the primary author, who is a member of the community and has experience in the field of physical rehabilitation, used her knowledge of the community to identify possible participants. in addition, political and religious leaders in the community were approached for names of healthcare users. participants included eight healthcare users (both men and women) with ages ranging from 4 to 62 years (in the instance of children, legal guardians were interviewed); eight healthcare service providers whose duties included wheelchair service delivery (both providers based at the fraserburg chcc as well as those providing outreach services to the chcc); and seven key informants who were members of the community and had a specific knowledge of healthcare service provision in the community. of these participants, 10 either used or needed a wheelchair, or were involved in the management, prescription and procurement of wheelchairs. data were obtained through observations at the chcc and from participants through semi-structured interviews, undertaken in three rounds by the primary author. after the initial round of 16 interviews in april 2010, the data were analysed provisionally and key issues were identified for further exploration. these included the procurement and provision of wheelchairs. a further five individuals who were knowledgeable on wheelchair services were identified and interviewed in june 2010. through the analysis of these five interviews, it was decided to add a final interview with the person in charge of wheelchair provision in the northern cape in order to provide a perspective from the provincial level. in instances where initial analysis indicated a need for further exploration, the primary author went back to the specific participants for clarification. all interviews were recorded digitally and then transcribed, after which the content was analysed by the primary author. the framework approach to data analysis was used (pope, ziebland & mays 2000). predetermined codes derived from the research question were used, but at the same time data were used to generate related and new themes. the themes were organised under the eight service steps described by the who guidelines (who 2008). aspects considered in the initial coding included the words used, the context in which things were said, the frequency, extensiveness and intensiveness of comments, as well as internal consistency and specificity (rabiee 2004). narrative examples were extracted in order to illustrate the discussion of the findings. the qualitative analysis was conducted manually, that is to say, not by use of a software programme. results top ↑ the results are presented with reference to the framework of the eight service steps of a comprehensive wheelchair service as stipulated by the who (who 2008). this facilitates the comparison of the ideal who guidelines with what actually happens ‘on the ground’. service step 1: referral and appointment according to the who guidelines (who 2008), a clear referral network allows community sources and healthcare service providers to identify and refer persons who may benefit from wheelchairs. although the nrp (doh 2000) advocates the importance of referral pathways, no dedicated wheelchair referral system could be identified in the study setting. wheelchair referrals followed the same referral path as general rehabilitation needs. it was found that only persons with a better prognosis were referred for wheelchairs, whereas those with poorer prognoses or lower levels of functioning were not referred. by doing this, wheelchair service providers did not follow a rights-based approach as independent function appeared to be prioritised over, for example, enhancing quality of life, reducing the burden of care, or restoring dignity. this was illustrated by a service provider who recognised the need for a wheelchair for a 4 year old child with physical and cognitive impairments, but failed to refer the child based on her poor level of functioning, leaving the child to crawl or be carried by the carer. in another example, a participant who suffered pelvic and hip fractures secondary to cancer was also not referred for a wheelchair: ‘we had to provide for ourselves. the wheelchair we got from a friend of mine … we bought the wheelchair from her.’ (p1, user, female, 63 years) service step 2: assessment assessment is the second service step of a comprehensive wheelchair service programme. the majority of good practice guidelines promote detailed individual assessments by trained staff and documentation on dedicated service forms (health professions council of south africa [hpcsa] 2008; whitcombe-shingler 2004; who 2008). although users were assessed individually and findings were documented on dedicated forms, assessments were incomplete and limited to personal income, body measurements and some basic accessibility and environmental factors: ‘i complete a form … they ask [on the form] income level … you have to measure the thigh length and the knee to the foot and the hip width … then it asks if there are steps and what the area around the house looks like.’ (p20, provider, female, 24 years) service step 3: prescription during prescription, the most appropriate wheelchair is selected by matching the technical specifications of the wheelchair with the user’s function, environmental, health and postural support needs (moody et al. 2012; whitcombe-shingler 2004; who 2008), as determined by the assessment. best practice and a rights-based approach advocate for education of, consultation with and active participation of the user (borg 2011; di marco, russell & masters 2003; un 2006b; who 2008), as well as for different wheelchair options to be demonstrated to the user. the user, where possible, should try out various wheelchair options in order to make an informed choice (fogelberg et al. 2009; who 2008). an interview with the person in charge of procurement in the study setting confirmed that no wheelchairs were available at the service centres for assessment and prescription purposes and that only the basic folding-frame wheelchair (orthopaedic hospital-style wheelchair) was available to be issued to users. toward the end of the study period the officer in charge of wheelchair distribution reported positive changes. these included improvements of the assessment form and prescribing appropriate wheelchairs from the full range on tender. however, ground-level service providers did not agree that these changes were implemented in the study setting. service step 4: funding and ordering in fraserburg, approval and authorisation of the prescribed wheelchair is carried out by a third party in the provincial procurement offices  800 km away. the distances alone cause inevitable delays in the supply of wheelchairs, with delays of up to four years reported. these delays can result in a loss of function and an inability to participate in family, community and economic life, and, for some, the indignity of spending their last days without any mobility:‘[w]e have orders from 2006 that have not been delivered yet. the previous week we finally received a wheelchair. when i went to deliver the chair the woman had died.’ (p20, provider, female, 24 years) services for children should be prioritised as they are a high-risk target group for rehabilitation interventions (doh 2000, 2003; un 2006b; who 2008). parents of children using buggies (children-specific postural-support devices) reported significant improvement with regard to posture, mobility and function (rigby, ryan & campbell 2009). however, they were also subject to delays: ‘[i]f the child is three years old and requires a buggy and the buggy is delivered in two years’ time then the child is five and the buggy will not fit anymore. it is a waste of money if you think about it.’ (p20, provider, female, 24 years) this statement also reflects a wastefulness of resources (the cost of a buggy is approximately $750 and is one of the more expensive devices available) (south african national treasury 2010). the delay in provision is also potentially detrimental to the child’s functioning and health. budgetary constraints and unpredictable annual budgets were given as being the main reason for the long waiting lists and delayed provision. driven by the need for mobility, any donated wheelchair, irrespective of type, size or user-specific needs, was accepted: ‘it depends on what apd [association for persons with physical disabilities] can get’ (p14, key informant, male, 40 years). at the time of the study, the financial shortfall was addressed through transferring funds from the hearing-aid provision programme, which was not fully implemented due to a lack of the relevant staff capacity: ‘[l]ast year the hearing aid budget was shared with us because there were too many hearing aids and too few therapists to fit hearing aids. so they have got a backlog of fitting instead of a backlog of waiting. so we got that part of the budget to clear our backlog and then next year we will split the budget again.’ (p24, provider, female, age unknown) article 4 of the uncrpd (un 2006b) promotes free or subsidised provision of assistive devices. in accordance with this, the south african uniform patient fee system (doh 2009) allows for both free and subsidised provision of assistive devices based on a means test. participants in receipt of social grants who took part in this study confirmed that they received their wheelchairs for free: ‘[t]hey give it. you just have to make sure that when you die, your family gives it back. so every time you get a new chair you give the other one back and when you die you give everything to the hospital.’ (p2, user, male, 63 years) the wheelchair budget was managed from provincial level: ‘[t]here is a provincial budget. it has not been decentralised because therapists change so often in the district. there are no constant persons that can do the ordering from that level, so we have made it a provincial function.’ (p24, provider, female, age unknown) service step 5: product preparation this essential step (who 2008) ensures that the wheelchair matches the assessment and prescription findings and that it is safe and mechanically sound. as wheelchairs are not custom-fabricated for each user, each wheelchair requires individualised adjustment and/or customising in order to ensure that the configuration supports the optimal functional, postural support and health needs of the users. this step is also not listed as being a required service step in the sa national guidelines, nor was it mentioned in any of the interviews. service step 6: fitting fitting aims to ‘ensure that the wheelchair fits correctly and supports the user as intended’ (who 2008:83). the sa national guidelines (doh 2003) fail to provide the scope for a proper fitting process and the results of this study suggested that this step was carried out superficially: ‘i set it up as i was taught at university, basically the footrests, give the cushion, put the brakes on’ (p20, provider, female, 24 years). service step 7: user training article 20(c) of the uncrpd, the who guidelines and the sa national guidelines emphasise training of the user by trained service providers in mobility skills, general health care and basic device maintenance (doh 2003; un 2006b; who 2008.) information from both service providers and users indicated a gap between guidelines and practice with regard to user training in fraserburg. one of the service providers said: ‘i show him to reverse and things like that. not very higher grade …’ (p20, provider, female, 24 years)it seems as if neither the service providers nor the users understood the risks involved in incorrect fitting or adjustments of the wheelchair. one participant-user reported: ‘yes, the occupational therapist comes to see that these [foot plates] are tight and they give you a key in case the nuts and bolts get loose. they adjust the height for your legs [footrests]. if you want it higher or lower, you can set it yourself …’ (p2, user, male, 63 years) when asked if he was trained in basic transfers and mobility skills, one user responded: ‘no. all they said is that i must exercise my arms a lot. oh sorry, they also said i must try to walk. so my wife helps me here at home – she helps me get onto the bed and from the bed into the wheelchair.’ (p2, user, male, 36 years) service step 8 follow up follow up appointments are essential with regard to monitoring the on going appropriateness of the wheelchair fit, postural support, function and use in the environment (doh 2003; fogelberg et al. 2009; hansen, tresse & gunnarson 2004; who 2008). as people’s health, activity level and environment may change over time, a different type of wheelchair or adjustments to the current one may be needed (di marco et al. 2003; scherer 1996). study findings indicated a lack of follow-up services and the sa national guidelines (doh 2003) also do not list follow up as being a service step. at the time of the study, one participant, whose wheelchair may have been a correct fit at the time of issue, was using a wheelchair which was too wide. maintenance and repairs despite evidence that routine inspection of wheelchairs decreases accidents, hansen et al. (2004) found that users often do not report wheelchair deterioration in good time and therefore recommend regular mechanical maintenance in the user’s home every 12–24 months. according to the sa national guidelines (doh 2003), basic repairs should be preformed on a ‘fix-while-you-wait’ basis or within three days. participants reported that there is only one official wheelchair repair centre, 800 km away from the study site: ‘[t]o fix it … they send it away … then you wait; and it could take up to a year’ (p2, user, male, 63 years of age). this was confirmed by the government official in charge of wheelchair services: ‘we have only got one [repair centre] in kimberley, and none anywhere else in the province. so we have done workshops with the therapists, so some of them can do basic maintenance themselves, but the major overhaul and stuff needs to come to kimberley. that is a challenge because then the client is without a chair … sometimes what happens is that the patient comes to kimberley with the chair and then they are here for the day and then the guys do the overhaul for the whole day and when the patient goes back, they go back with their chair. that is the ideal, but in cases where the maintenance cannot be done that fast, then they either get a loan chair or they get left without a chair.’ (p24, provider, female, age unknown) a positive finding was the pro-active approach to wait-listing of existing wheelchair users whose wheelchairs are reaching the end of their lifespan: ‘look, a client who requires a second chair, they come in and they are reassessed and are put back onto the waiting list, depending on the condition of the chair. if the chair cannot be repaired, or if the last repair can now be done, and nothing after that. we already place the person back on the waitlist [sic].’ (p24, provider, female, age unknown) although wheelchairs available on the tender have to pass stringent durability tests (south african national treasury 2010), the durability requirement is also in line with the intended use of the chair. despite adhering to durability specifications, the basic folding-frame wheelchair, essentially an indoor, low active-use chair, does not last under high active outdoors use: ‘i haven’t had this one long, but it is very feeble … they give in easily. this one is broken at the back and here too; [shows the arm rest] … often the things get loose and get worked out … i had to swap one of these [the footrest] … [because it] … does not work.’ (p2, user, male, 63 years) discussion top ↑ interaction between service steps from the findings, it seems as if many of the service steps for wheelchair service delivery in the study setting were either not followed or were followed only superficially. there were implementation gaps with regard to the who guidelines (who 2008) and sa national guidelines (doh 2003). this had a negative impact on wheelchair service delivery and, consequently, on user function. it is important to point out that service steps are interdependent. a challenge at any one point will affect negatively any preceding and subsequent steps as well as user outcomes.this interdependence and its impact on user function are further explored through the example of prescription (service step 3). findings indicated that prescription was not carried out according to policy. this can have a ripple effect on funding and ordering, fitting, training, maintenance and repairs. at the same time prescription cannot be divorced from assessment and referral and it is also influenced by service management and provider training. if only one type of wheelchair is provided, as was the case in the study setting, it might be deemed unnecessary to perform prescription according to policy. it seems pointless to give the user a choice between different wheelchairs if only one type will be funded. even so, limited choice is better than no choice and the wheelchairs provided in the study setting allow for choices such as type of upholstery, frame coating and colouring as well as wheeland castor width. users were not, however, afforded even these basic choices. in addition, showing users all types of wheelchairs can raise awareness amongst users. this in turn can lead to user advocacy in order to ensure their right to an appropriate assistive device. however, to implement this change with success it is necessary that service providers at both the district and clinic level receive training and that examples of the different options be made available for them for use during assessment and prescription. whilst having a full range of all wheelchairs at every clinic might not be feasible, it must be possible (with the assistance of manufacturers) to have some physical examples as well as brochures and dvds at each of the hospitals where assessing therapists perform outreach services. wheelchair assessment and prescription is a complex process, with many variables needing to be taken into account (di marco et al. 2003). the assessment should provide adequate information on the user’s lifestyle and social roles, level of functioning, environmental and postural support needs, cognitive and health needs, body measurements as well as safety and stability requirements to determine the specifications of an optimal wheelchair for the user (greer et al. 2012; moody et al. 2012; whitcombe-shingler 2004; who 2008). with the information gathered during wheelchair assessment in the study setting it would be difficult to prescribe an appropriate and safe wheelchair that will optimise user function and decrease the risk for accidents and secondary complications (hansen et al. 2004; moody et al. 2012). assessment and prescription are dependent on knowledgeable providers. literature (doh 2003; greer et al. 2012; who 2008) emphasises that only appropriately-trained staff should provide wheelchair services. new graduates and newly-trained service providers require mentoring and guidance to deliver a comprehensive wheelchair service. the results of the study demonstrated a lack of knowledge and training of service providers in wheelchair provision as well as the absence of mentoring and support. training packages are available in south africa (provincial government of the western cape doh 2009a, 2009b, 2010) and managers in the northern cape might be well advised to make sure that service providers receive this training. however, a thorough assessment and correct prescription by adequately-trained providers will be of little value if the prescribed wheelchair is not funded or if the prescription is changed during the ordering process. purchasing of wheelchairs in the public sector in south africa is governed by a national tender document (south african national treasury 2010). this document includes a comprehensive range of wheelchair options including manual, motorised or attendant-propelled and if appropriate for use in urban, rural and peri-urban settings. however, it seems as if financial constraints made only one type of wheelchair available to users in fraserburg. the design characteristics of this chair (i.e. a relatively high seat, short wheelbase and no adjustability to optimise mobility and stability) make it unstable when used on uneven terrain. unstable wheelchairs were linked to 16 fatal incidents in the uk over a three year period (moody et al. 2012). according to the procurement officer, the main challenge with regard to wheelchair service delivery was insufficient funds. a short term solution, namely, using funds earmarked for hearing devices, was used in order to address the wheelchair backlog. this impacts negatively on the rights of users with hearing impairments and does not provide sustainable funds for wheelchairs. this lack of funds might have been the cause of non-governmental organisations (ngos) trying to relieve the need in any way possible as is described in the findings. whereas such efforts may relieve some of the immediate need for wheelchairs, these ad hoc solutions are not sustainable and raise concerns about the suitability and appropriateness of the wheelchair (mukherjee & samanta 2005; who 2008). literature indicates that unsuitable donated wheelchairs have a negative impact on user function, can cause injury and secondary complications and are often rejected (mukerjee & samanta 2005). thus funding, assessment, ordering and provider training can affect prescription negatively, either singly or in combination, and create a situation where an inappropriate wheelchair is prescribed. this in turn is sure to affect product preparation, fitting, user training and function. in a low-resource setting where wheelchairs may not fully match the prescription, product preparation is an essential step which allows modification and adaptation of the wheelchair to optimise the user’s function, health and postural support (who 2008). this further highlights the need for specific provider training, because in order to prepare the wheelchair optimally providers must be trained in a suitable manner. chaves et al. (2004) reported that 41% of wheelchair problems can be traced to poor fit. fitting, carried out by trained providers, is critical in order to ensure postural stability and to prevent complications (doh 2003; hansen et al. 2004; who 2008). optimal fitting is dependent on a comprehensive physical assessment of the user, correct prescription and optimal product preparation (moody et al. 2012). if the wheelchair specifications do not adhere to the height, width, length and postural support requirements of the user, it might be impossible or at least very difficult to ensure optimal fitting. fitting in turn impacts user training. if the wheelchair does not provide proper postural support the user might sit in a position that is ergonomically suboptimal for self propulsion, operating safety devices such as the brakes, balancing on the back wheels and transferring. appropriate training leads to significant improvement in general wheelchair mobility, increased mechanical efficiency and safety (de groot et al. 2008; macphee et al. 2004; ozturk & dokuztug 2011) and increases the lifespan of the wheelchair (mcadam & casteleijn 2005b). users should understand the purpose and importance of every component of the wheelchair in order to ensure the safe use of their wheelchair (whitcombe-shingler 2004). when an untrained user makes critical adjustments, such as changing the footrest height, it can have serious implications. footrest height has a direct impact on postural stability and alignment, which may in turn have an impact regarding the risk for pressure ulcers, spasticity, contractures, poor organ function and decreased mobility (hansen et al. 2004). no evidence could be found that users were taught pressure-relief techniques and methods for preventing contractures of the spine, pelvis and lower limbs – all of which are complications associated frequently with wheelchair use (krause et al. 2008). another aspect that will affect training and user function is the suitability of the wheelchair to the environment. south african literature indicates that wheelchairs are ‘shelved’ if they are not suitable for the terrain in which users live and cannot be self-propelled on footpaths (chakwiriza et al. 2010). areas in the study setting are connected by a series of gravel roads and single-track footpaths. the wheelchair provided was not suitable for use on these roads (mcadam & casteleijn 2005b). the combined challenges in the service steps above may have a negative impact on maintenance and repair. although the basic folding-frame wheelchair is cheaper than other models of wheelchairs, it is designed for low active, indoor or temporary (mcadam & casteleijn 2005a) use and, therefore, when used in rural conditions, requires very high levels of maintenance and has an extremely short lifespan (mukerjee & samanta 2005). in addition, literature tells us that inappropriate wheelchairs are often abandoned or used less frequently which, in turn, impacts negatively on independence and quality of life (mukherjee & samanta 2005; scherer et al. 2005). all this has negative financial implications for both users and the service provider (mcadam & casteleijn 2005a). in addition, the repairs were performed far from the home setting, leaving users without mobility for the time taken to transport and repair the wheelchair. if they went with, they had to deal with traveling  800 km, the strangeness of a different city and city hospital and poor accommodation. neither the cost, not the loss of independence created by this situation, is acceptable. repair services should be contracted to a local supplier. thus challenges with regard to individual service steps as well as a combination of all the steps, result in poor outcomes which prevent users from reaching optimum levels of mobility and function and can cause complications and injuries (chaves et al. 2004; fogelberg et al. 2009; mukherjee & samanta 2005; tomlinson 2000), resulting in an infringement of their basic rights. this is illustrated in the following narrative: ‘… it does not fit on the footpaths. you have to go on the road’ (p2, user, male, 63 years). the footpath was the shortest route by which this man with asthma and no transport could reach the chcc when he required oxygen whilst having an asthma attack. the major factors limiting policy implementation and a rights-based approach the south african national department of health requires a rights-based approach to the provision of wheelchairs through the sa guidelines (doh 2003) and the nrp (doh 2000). however, implementation of policy and guidelines is left to individual provinces and districts (doh 2003). south africa’s health system faces an array of challenges that hinder policy implementation, many of which are more pronounced in rural areas. one of these relates to service providers. literature indicates a serious shortage of service providers in rural areas (cooke, couper & versteeg 2011). in addition, staff in rural areas often lack experience and specialised skills (gaede & versteeg 2011) and high staff turnover causes a lack of continuity (van deventer et al. 2008). management is another area of healthcare provision in south africa that experiences challenges (mayosi et al. 2012; naledi, barron & schneider 2011). naledi et al. (2011) see the practice of controlling financial resources and decisions from provincial level as being one of the reasons for which district-level management fails. this practice creates role uncertainty and does not give district managers the autonomy to develop solutions to the challenges they experience. this study identified many of the abovementioned staff-related and managerial challenges. in addition, wheelchair service delivery was challenged by the sheer size and remoteness of the gsa. the decision to manage wheelchair delivery services from the provincial level might have seemed reasonable in the light of the junior level of staff at the district and clinic level, as well as the high staff turnover. however, this practice limits access to wheelchairs for assessment and prescription and delays provision and fitting of the wheelchair. it seems an unsuitable choice in a province where distances are huge and poor road infrastructure creates challenges and is against primary health care policy. in addition, provincial mangers might lack local knowledge. for instance, managers at provincial level who are unfamiliar with the lack of road infrastructure in the study setting might have thought it appropriate to disregard policy and save money through providing only one type of wheelchair. however, managers at district level have better knowledge of local requirements and are thus in a better position to make decisions on the types of wheelchairs to issue. budgetary challenges impacted negatively on the ability of service providers to provide a service in accordance with policy and guidelines. all programmes for provision of assistive technology require dedicated business plans with clear objectives, outputs and outcomes. business plans should include strategies to manage budgetary shortfalls and should consider options such as public or private partnerships and coordination of donations. however, the development of business plans requires adequately-skilled managers. ethical considerations top ↑ the study received ethical clearance from the committee for human research of the university of stellenbosch. permission to access the fraserburg community health care centre (chcc) and gsa was obtained from the northern cape department of health. participation in the study was voluntary, confirmed by individual informed consent and did not influence adversely any future access to healthcare or wheelchairs on the part of the participants. all data gathered in the study were treated as confidential. trustworthiness top ↑ trustworthiness of data was achieved through prolonged engagement, triangulation, detailed description of the methodology, reflection and provision of a chain of evidence. engagement with study participants occurred for various periods of time between 2010 and 2012. in addition, the first author was a member of the community and interacted with the community on a daily basis. depth of data and understanding was sought through probing questions, engaging all senses during data collection, keeping field notes of observations made and going back to participants to further explore issues that were found to be unclear during provisional data analysis. information from various data sources, such as service providers, service users and observations made by the researcher were triangulated. interpretations and conclusions made in this article can be traced back to the results and discussion section. the information on which results and the discussion are based can in turn be found in the database, which is available for independent analysis or review. the authors tried to provide a clear description of the study methodology. this should provide readers with background should they wish to determine to what extent conclusions and recommendations can be transferred to other settings (cohen & crabtree 2006). limitations top ↑ the findings presented in this paper are limited to one setting and qualitative study methods were used, thus whilst the authors’ clinical and research experience indicate that the setting has many similarities with other rural and remote settings in south africa, extrapolation of findings and recommendations to other settings must be performed with caution.data were analysed by the primary author, without the use of computer software. greater rigour might have been achieved if data were analysed and coded by more than one person or if a software programme were used. recommendations top ↑ to improve users’ access to wheelchairs, wheelchair services providers and community sources should be re-orientated to recognise the wheelchair as a tool to realise basic human rights, such as a means to access health care services, provide dignity, alleviate the burden of care and to allow equal access to opportunities for education, employment, and community and social life (doh 2003; greer et al. 2012; un 2006b; who 2008). in addition, to improve service delivery and access to services a comprehensive decentralised wheelchair service management programme, inclusive of all of the service steps and standards in accordance with the uncrpd, who guidelines and sa national guidelines (doh 2003; un 2006b; who 2008) must be developed. conclusion top ↑ this study provides preliminary evidence from one rural setting. further exploration of wheelchair provision in other less-resourced settings as well as deductive studies to quantify challenges (lang et al. 2011) is required to provide a comprehensive picture. however, the findings of this study showed important gaps between both local and international policy and service delivery. none of the eight steps of wheelchair service delivery according to the who guidelines were implemented in full (who 2008), nor were the sa guidelines (doh 2003) or the uncrpd implemented during wheelchair provision in the study setting. acknowledgements top ↑ we thank prof. leslie swartz, equitable project leader in south africa, for his input and support during the writing of this article. funding support this research was funded by the european commission framework programme 7, project title: enabling universal and equitable access to healthcare for vulnerable people in resource poor settings in africa, grant agreement no.: 223501. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions s.v. (university of stellenbosch) was involved in project design, did the data collection and analysis and drafted the article. e.s. (dare consult) made conceptual contributions and m.s. 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http://www.un.org/disabilities/default.asp?id=23 united nations (un), 2006b, convention on the rights of persons with disabilities, viewed 17 january 2011, from http://www.un.org/disabilities/convention/conventionfull.shtml van deventer, c., couper, i., wright, a., tumbo, j. & kyeyune, c., 2008, ‘evaluation of primary mental health care in north west province – a qualitative view’, the south african journal of psychiatry 14(4), 136 –140. whitcombe-shingler, m., 2004, ‘the history of the wheelchair assessment services in new zealand: from client centred to client directed’, the new zealand journal of occupational therapy 53(2), 27–31. world health organisation (who), 2008, guidelines on the provision of manual wheelchairs in less resourced settings, who press, geneva. abstract introduction research methods results discussion conclusion acknowledgements references about the author(s) femke bannink faculty of psychology and educational sciences, ghent university, uganda richard idro department of paediatrics and child health, college of health sciences, makerere university, uganda geert van hove faculty of psychology and educational sciences, ghent university, uganda citation bannink, f., idro, r. & van hove, g., 2016, ‘parental stress and support of parents of children with spina bifida in uganda’, african journal of disability 5(1), a225. http://dx.doi.org/10.4102/ajod.v5i1.225 original research parental stress and support of parents of children with spina bifida in uganda femke bannink, richard idro, geert van hove received: 02 sept. 2015; accepted: 13 nov. 2015; published: 31 may 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: children with disabilities in sub-saharan africa depend for a large part of their functioning on their parent or caregiver. this study explores parental stress and support of parents of children with spina bifida in uganda. objectives: the study aimed to explore perceived stress and support of parents of children with spina bifida living in uganda and the factors that influence them. methods: a total of 134 parents were interviewed. focus group discussions were held with four parent support groups in four different regions within the country. the vineland adaptive behaviour scales, daily functioning subscales and parental stress index short form (psi/sf) were administered to measure the child’s daily functioning level and parental stress levels. results: parental stress was high in our study population with over half of the parents having a > 90% percentile score on the psi/sf. stress outcomes were related to the ability to walk (spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). parents in northern uganda had significantly higher scores compared to parents in other regions (parental distress, f = 5.467*; parent–child dysfunctional interaction, f = 8.815**; difficult child score, f = 10.489**). conclusion: parents of children with spina bifida experience high levels of stress. to reduce this stress, rehabilitation services should focus on improving mobility. advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed. introduction spina bifida in uganda spina bifida is a neural tube defect, a congenital abnormality causing disability, whereby the spinal cord and vertebrae do not form completely and the neural tube fails to develop normally. the worldwide incidence of spina bifida varies between 0.17 and 6.39 per 1000 live births (bowman, boshnjaku & mclone 2009; kinasha & manji 2002; msamati, igbigbi & chisi 2000; shaer et al. 2007). in uganda, incidence data are not available. warf et al. estimated a birth incidence of 1 in 1000, translating into 1400 children born with spina bifida in the country annually (warf et al. 2011). most children with spina bifida have some degree of paralysis, which affects mobility as well as bowel and bladder control (northrup & volcik 2000; verpoorten & buyse 2008). this affects participation in daily activities (danielsson et al. 2008; jansen et al. 2009). sixty-six per cent of the children with spina bifida develop hydrocephalus (warf & campbell 2008). surgery and rehabilitative care are expensive and inaccessible for many born with the disability in africa. families need to find resources for children with disabilities whilst already constrained. in uganda, the initial surgery (closure of the spine) at the time of this study was only available in mulago national referral hospital in kampala, and cure children’s hospital in mbale, eastern uganda. recently, mbarara regional referral hospital started offering the same. in north, west and central uganda, three rehabilitation centres offer specific occupational therapy, physiotherapy, continence management and social support services for children with spina bifida and their families in uganda (supplement figure 1: map). policies such as the united nations convention on the rights of persons with disabilities and disability act, amongst others, are in place and efforts are made by the ugandan government and not-for-profit organisations and hospitals to provide basic services for children with spina bifida and other disabilities (mertens & bannink 2012; oyaro 2014). despite these efforts, poverty continues to affect access to services for the majority of the population and more so for the families of children with disabilities (bannink et al. 2015; lwanga-ntale 2003; miles 2002). figure 1: map of geographical area. parental stress and disability parental functioning is of great importance for children with severe disabilities who depend for a large part of their functioning on the parent or caregiver. research on family functioning and psychosocial adjustment of families of children with spina bifida in high-income countries support a resilience–disruption view of family functioning, whereby the presence of a child with spina bifida disrupts normative family functioning at first, but after a period of time families adapt and exhibit considerable resilience (holmbeck et al. 1997; vermaes et al. 2007). the level of impairment has not been related to the general level of family functioning in europe and the united states (ulus et al. 2012; wiegner & donders 2000). nevertheless, spina bifida has been found to have negative medium–large effects on parents’ psychological adjustment and functioning (holmbeck & devine 2010; vermaes et al. 2005, 2008). in the review by vermaes et al. (2005), child, parent, family and environmental factors were found to be associated with variations in parents’ psychological adjustment. mothers are often at higher risk for parenting stress than fathers because of role differences in care and work (vermaes et al. 2008). children with hydrocephalus (literally ‘excess water in the brain’) are often in need of neurosurgical treatment, which may involve insertion of a shunt or creation of a bypass within the brain to allow the cerebrospinal fluid drain. shunts are prone to infections, which can be life threatening. for children with both spina bifida and hydrocephalus, such shunt dependency has been associated with higher levels of parental anxiety and depression (malm-buatsi et al. 2015). cultural differences have been described in a study of hispanic parents in the united states, in which mothers of children with spina bifida were found to be at risk for lower feelings of satisfaction and competence as parents compared to non-hispanic parents (devine et al. 2012). in malaysia, mothers of children with spina bifida had significantly higher stress scores compared to mothers with children without a disability (ong et al. 2011). in the same country, clean intermittent catheterisation was the only medical factor associated with such stress. this is a technique used to empty urine from the bladder using a catheter. most children with myelomeningocele, the severe type of spina bifida in children involved in this study, are incontinent of urine and benefit from practicing intermittent bladder catheterisation as this helps them to participate in daily activities without losing urine (ifsbh 2014). parental stress in malaysia was also mediated by single parenthood, caregiver status and the child’s adaptive skills (kanaheswari et al. 2011). african studies on parental stress in parents of children with spina bifida are limited. in south africa, greeff and nolting showed that families of children with developmental disabilities adapt better when they are more accepting of the situation, have more investment in the family unit and have positive patterns of communication and attitudes towards challenges (greeff & nolting 2013). in nigeria and tunisia, parents of children with neurodevelopmental disabilities and learning disabilities had higher rates of depression and anxiety compared to parents of children without a disability (abasiubong, obembe & ekpo 2006; ben thabet et al. 2013). in malawi, parents of children with neurodisability following brain injury experienced barriers to care and support (paget et al. 2016). similar findings were seen in south africa in families of children with mental health disabilities (coomer 2013). in kenya, mothers of children with spina bifida struggled with the financial implications of the child’s disability; most of them received some support from other parents and religious communities (vant veer et al. 2008). in the study, we aim to explore perceived stress and support of parents of children with spina bifida living in uganda and examine the factors that influence it. by understanding the stress factors, we hope to inform health and community-based rehabilitation services for children and parents with spina bifida in the country. we believe parental stress and support is highly dependent on the cultural and socio-economic context where parents live. contextual factors such as the differences in rural and urban setting, and the 22-year conflict between the lord’s resistance army and the government of uganda, which displaced over 2 million people in the north of the country (muyinda & whyte 2011), will be taken into account. research methods ethical considerations ethical approval and research clearance for the study were obtained from ghent university, belgium, the uganda virus research institute and the uganda national council for science and technology. informed consent was obtained from all parents. recruitment of participants selection of participants was performed in mbarara, kampala and mbale, where cure holds bi-monthly clinics. cure hospital and the partnering rehabilitation centres in kampala and mbarara were requested to list all children registered in their follow-up programmes and inform them during home visits and through telephone calls to attend the clinic. in gulu and lira where no follow-up system or registry of the children was in place at the time, radio announcements were aired to inform parents about the upcoming review clinics in the area, and specifically invited parents with children with spina bifida between the age of 4 and 14 to attend. data collection explorative mixed-study methods were employed to explore factors affecting parental stress and support in the ugandan setting (creswell & clark 2007) (singh 2007). both quantitative and qualitative data were collected concurrently from 134 parents between june 2011 and december 2014. quantitative instruments were used to explore daily functioning and stress levels. a selection of 10 items of the vineland adaptive behaviour scales (vabs) daily living skills subscale relevant to the ugandan setting were used. items included measures of daily functioning tasks such as removing a jumper, drinking from a cup, washing ones’ face, fetching water and dressing independently. items were scored 2 (behaviour is usually or habitually performed), 1 (sometimes or partly performed) or 0 (never performed) (sparrow et al. 1984). the parental stress index short form (psi/sf) consists of 36 items scored on a 5-point likert scale. the items are divided over three subscales: parental distress (pd), parent–child dysfunctional interaction (p-cdi) and difficult child (dc). a total stress score is computed from the three subscales and indicates the overall level of parenting stress in the areas of personal pd, stresses derived from the parent’s interaction with the child and stresses that result from the child’s behavioural characteristics. parents who obtain a total stress score above 90 are experiencing clinically significant levels of stress (abidin 1995). the presence of a (house) helper or other adults at home involved in the care of the child alongside the primary caregiver was registered as a measure of perceived support. membership of a parent support group was documented to understand wider support networks. qualitative methods were used to explore the day-to-day reality of parents of children with spina bifida in the ugandan setting. semi-structured interviews were held with all 134 parents. in addition, focus group discussions were held with four parents’ support groups, in gulu, kampala, mbale and mbarara, respectively. questions for the interviews and focus group discussions were formulated to develop a more in-depth understanding of perceived parental stress, coping strategies and the role of support from others. specific focus group discussions with parent support groups were held to further understand their activities and possible contributions in reducing parental stress and increasing perceived support. in total 5 of the 134 parents took part in the focus group discussions, the other members of the focus groups (26) were not interviewed individually. the interviews with the parents were held in the local language of the area, and a translator was hired and trained for each area to assist in conducting the interviews and focus group discussions. some of the interviews were conducted in english, if parents were fluent and requested for this. data analysis the semi-structured interviews and focus group discussions were transcribed, translated, coded and analysed using thematic analysis in nvivo version 10. basic demographic data, details on the child’s impairment, social support and scores for the vabs daily functioning subscale and psi/sf were entered and analysed using spss16. the sub-total scores for each subscale was calculated and compared with > 90% percentile scores from the psi manual, which indicates high levels of stress. to understand relationships between demographic and impairment variables and parental stress levels, spearman’s rho correlations were computed. to compare regional differences, a multivariate analysis of variance (manova) between psi scores between the various regions was carried out. linear regression analysis was conducted to understand the factors that mostly contributed to parental stress. results description of study participants table 1 describes the demographics of the study population. parents’ ages ranged from 24 to 46 years with an average age of 32.9 (sd 5.2) years. the majority of the parental respondents were the mother to the child, followed by fathers and grandmothers. over 75% was married and christian. almost half of them were farmers. table 1: demographics of the study population (n = 134). the mean age of the 80 (59.7%) male and 54 (40.3%) female children with spina bifida (myelomeningocele type) was 6.1 (sd = 2.0) years, ranging from 4.0 to 14.0 years of age. only 76 (57.3%) of them were going to school: 49 (37.4%) were in nursery school, 22 (16.8%) in primary school and 4 (3.1%) in secondary school. the household size ranged from 2 to 13 with an average of 6.5 persons per household; an average 4.3 children (sd 2.2) and 2.3 adults (sd 1.0) per household. the average monthly household income is 82 euros (range, 12–604 euros). the majority of the children (128, 95.5%) had undergone surgery to close their spine (myelomeningocele closure) earlier in life. of the 61 children who had both spina bifida and hydrocephalus, 22 (35.9%) had undergone endoscopic third ventriculostomy whilst 1 (18.6%) had ventriculo-peritoneal shunts placed. only 2 (3.6%) of the children of parents in the study never had surgery. most parents took their children (118, 90.8%) for rehabilitation services such as physiotherapy and occupational therapy. parents’ stress index outcomes the parent stress index questionnaire was administered to all parents. scores were normally distributed for all items including the total subscales. we excluded three cases from the analysis as scores showed defensive responding (score < 10). table 2 shows the subscales scores. more than half of the parents (52.7%) scored above the 90% percentile on total stress. higher scores were seen on the p-cdi domain with 48.1% (63) scoring above the 90% percentile, followed by the dc domain with 32.8% (43) scoring above the 90% percentile and the pd score in which 14.5% (19) of the parents scored above the 90% percentile. table 2: psi/sf subscale and total scores for 131 parents of children with spina bifida. spearman’s rho correlations were calculated for demographic variables, impairment-related variables, for example incontinence and mobility, daily functioning skills and perceived support from another adult and parent support groups. table 3 shows the variables that had significant spearman’s rho correlations. variables with significant correlations with psi outcomes were the child’s ability to walk, continence and use of clean intermittent catheterisation and bowel management, receiving rehabilitative care, household income, location (region where the child and family lives) and having support from another parent in taking care of the child. household income correlated positively with school going, region, parental education, the use of assistive devices, receiving rehabilitation services, using catheterisation and having support from another adult. table 3: spearman’s rho correlations psi/sf scales (n = 134) based on the significant correlations found, linear regression analysis was performed to investigate factors that were determinants for high scores in the pd, dc and p-cdi subdomains of the psi/sf. all variables with significant correlations were entered in a stepwise regression model. the best predictive models are displayed in table 4. results are expressed as beta coefficients, r2 values and f values in table 4. the ability to walk, having support of another adult and the location where the child and family are residing were the significant contributing predictors. table 4: linear regression model of psi/sf total and subscale scores, with demographic, impairment and support-related predictors presenting (only significant predictors for each dependant variable). manova results showed that parents in northern uganda had significantly higher > 90 percentile scores on the psi subscales compared to parents in other regions: pd f = 5.467*, p-cdi f = 8.815** and dc f = 10.489**. no significant differences were found between the other regions. children’s mobility and incontinence the inability to walk was the largest contributor to parental stress and perceived parental difficulty in managing and caring for the child. parents of children with both spina bifida and hydrocephalus had higher scores on dysfunctional interaction between parent and child compared to those with only spina bifida only. the majority of the children with spina bifida whose parents were interviewed were able to sit without assistance and could speak. half of them were able to walk without assistive devices. of the ones who were in need of assistive devices, a third used crutches, another third a wheelchair, whilst the others had no access to assistive devices and crawled. in our study population, 88.6% of the children were incontinent and 81.1% of them used clean intermittent catheterisation to manage the incontinence. table 5 shows the various percentages for the impairment-related variables. table 5: children’s mobility and physical impairments. in the interviews, parents indicated mobility was a major challenge and stressor. many parents narrated how they carried their children on their back to the land they cultivate (most of them are subsistence farmers), to public transport and sometimes to school when the children were young. some still continue to do so as assistive devices are not always available or applicable for use in their setting. ‘she is getting heavy now. she was easy to carry, she is still a bit small, but her head is heavy. i have no alternative; there is no one to help at home, so i have to bring her with me to the garden when i go to dig. i put her under a tree in the shade.’ (parent of a 5-year-old girl with spina bifida in northern uganda) ‘when it is rainy season our roads are too slippery for him. he can’t go to school then. on other days the wheelchair is good, we can push him, and he tries to use it himself.’ (parent of an 11-year-old boy with spina bifida in western uganda) although incontinence did not explain parental stress for a large part on the psi outcomes, apart from practising bowel management on the pd subscale, in the focus group discussions and interviews the majority of parents said incontinence was the most complex factor in managing their child’s health, more than the (partial) paralysis. whilst the majority did practice catheterisation, parents complained practicing catheterisation and bowel management outside home and the rehabilitation posed a big challenge. managing their children’s catheterisation meant that parents had to be close by and available to help the child practice catheterisation, for example at school every 6 hours. accidents or ill-managed catheterisation also caused stress as the child would be wet and smelly, which would result in others commenting or pitying the parents. ‘we have used catheterization since my child was 2 years old. we are used to it, but when we go out or i am away, it is difficult. in most public places there is no place to practice catheterization. we have to do this behind the latrine in the open, which is not good.’ (parent of a 4-year-old daughter with spina bifida and hydrocephalus in western uganda) parents’ support systems almost half of the parents (63, 47.7%) mentioned they have support of another adult in the household to care for their child with spina bifida. having another adult to support in providing care significantly contributed to having less dysfunctional parent–child interaction on the psi outcomes. this other adult would be a spouse, relative or house help. in the focus group discussion and interviews, parents who did not have support from another adult explained they found it very stressful to be constantly responsible for their child and often felt isolated, as they could not attend family and community functions because of their care obligations. whilst some could leave their other children with neighbours or friends, they said it was hard to find someone who would be ready to take care of their child with spina bifida. parents in the north and east had less support from other adults compared to those in the central and western regions. ‘i don’t have a house help, when i need to go somewhere i have to take her with me. i can’t leave her with the neighbours; they don’t know how to look after her.’ (parent of an 8-year-old daughter with spina bifida in eastern uganda) in total, 55 (41%) parents were members of a parent support group. no interaction was found between psi outcomes and membership of a parent support group. table 6 provides details of the reasons of (not) participating in a parent support group. from the interview, those who were members of a parent support group indicated it mostly helped them to learn more about taking care of their child (50.9%), followed by feeling encouraged by other parents (14.5%), enjoying sharing experiences and learning from each other (14.5%) and income-generating opportunities (12.7%). ‘coming to the parent support group is helpful because they teach me how to do catheterization and they understand my problems.’ (parent of a 4-year-old girl with spina bifida in the western region) table 6: reasons for (not) participating in parents support groups for parents of children with spina bifida and hydrocephalus. the majority of parents who were not members of a parent support group said they were not aware parent support groups existed (55.1%), and some mentioned they had heard about parent support groups but lived too far away from the rehabilitation centre to attend meetings regularly. ‘i did not know there is a support group […] also i live far away, i travel 3 hours to gulu [where the psg meets]. it is not easy to come.’ (parent of a 7-year-old boy with spina bifida in the northern region) to explore the support given by the psg further, focus group discussions were held with 26 mothers and 6 fathers active in parents support groups in gulu (9: 8 mothers, 1 father), kampala (6: 5 mothers, 1 father), mbale (8: 6 mothers, 2 fathers) and mbarara (9: 7 mothers, 2 fathers). parents explained the groups started with help of the rehabilitation centres in three sites; in gulu, the group started based on a community-based rehabilitation initiative which was started up during the conflict in the area. the main objectives of the groups were to motivate and support each other in caring for their children, provide information and training on care and rehabilitation and create awareness in their communities about the disability. parents said they themselves enjoyed participating in the psg as they would learn more about taking care of their child and were able to advise and encourage others. the majority indicated that the feeling of ‘not being alone’ in this situation and being able to share specific challenges with others with similar experiences helped them to continue caring for and loving their child more. ‘when i attended the first time, i was so surprised and happy i was not the only one with a child like mine. there were children who could not even sit. the other parents were so encouraging; they gave me hope and a lot of information and ideas on how to help my child and myself.’ (parent of a 7-year-old daughter with spina bifida and hydrocephalus in central uganda) some parents mentioned the group had given them new friends and support networks. for example, in case of advocating for children, parents in kampala and mbarara gave examples on how other parents would join them in visiting schools trying to get a space for their child. many schools would refuse children with physical impairments, but if going as a group or pair, head teachers were said to take their call more seriously and were more likely to give them a space. similar advocacy took place on inclusion and reducing stigma in communities, where parents would move around with their children explaining the impairment to community members and the need for their children and families to be included. in mbale, most members felt the group gave them spiritual support too. ‘i had gone to 4 schools and every time the head teacher said they can’t manage my child in school. there was a parent in the group, she had the same problem but had managed to find a school. she was a very strong woman. she came with me and spoke with the head teacher of a school near our home. he accepted and now my child is in primary 1.’ (parent of an 8-year-old daughter with spina bifida in western uganda) ‘the psg helps you to remember to come for follow-up and to work hard. it helps to talk with other parents and to know how to do catheterization. we pray for each other and thank god for our children and we tell others about them so they stop discriminating us.’ (parent of an 11–year-old daughter with spina bifida in eastern uganda) in northern uganda, most parents felt the group gave them an opportunity to start income-generating activities together. they had started a rotating loan scheme, which was helping members to set up small businesses. they especially felt stigma was high in their area, and support for them was difficult as some people believed the impairment was contagious. similar activities were mentioned in mbarara and kampala. stigma was mentioned in these areas too, but less directly connected to physical contact as in the northern region. ‘here [in the north] people think our children’s disability is contagious, they fear us, they avoid us. in the psg we can work together, we understand each other. we bought goats for the group, and when they produced we all got one. we started planting maize in the last rainy season together too.’ (parent of a 4-year-old son with spina bifida and hydrocephalus in northern uganda) discussion this study describes parental stress and support of parents of children with spina bifida in uganda. psi scores were high for our study population with more than half scoring above the psi/sf cut-off point for clinically significant levels of stress (abidin 1995). stress outcomes were related to the inability to walk, continence and use of clean intermittent catheterisation and bowel management, receiving rehabilitative care, household income, region and having support from another parent in taking care of the child. parental stress was mostly explained by the child’s inability to walk, practicing bowel management and having another adult to provide support in caring for the child. our study does not support the view that the level of impairment is not related to the general level of functioning or severity of the disability as earlier explained in studies of families with a child with spina bifida in europe and the united states (ulus et al. 2012) (wiegner & donders 2000). not being able to walk has great implications in an environment in which assistive devices are not easily accessible and where the environment is disabling. there are no social services or individual disability grants provided by the government of uganda to families with children with disabilities. as narrated by parents in the qualitative data, parents are responsible for carrying their children to school and feel that even if a child has a wheelchair, they often cannot use this on their own. earlier we showed how children with spina bifida had more difficulties in daily functioning than their siblings, which played an important factor in inclusion (bannink, idro & van hove 2016). parents expressed stress around incontinence management. because of the high and frequent involvement of parents on a daily basis, this could increase stress to parents, the majority of whom are either farming or working and not in a position to attend to their child every 4–6 hours as required for clean intermittent catheterisation. prior to self-catheterisation, which can be started from the age of 6 with normal intelligence and manipulative skills, parents are the primary helpers in practicing catheterisation (robinson et al. 1985). the responsibility and anxiety around incontinence has a social and psychological impact on families (borzyskowski et al. 2004). in our study, parents pointed out that catheterisation interfered with their lives, as they sometimes had to make extra trips to school to assist in catheterisation. similar concerns were raised in the study by kanaheswari et al. (2011) in malaysia. in our study, parents in the northern region expressed higher stress levels than those in other areas. northern uganda suffered a 22-year-long conflict between the government of uganda and the lord’s resistance army in which 90% of the population was displaced (muyinda & whyte 2011). together with challenges related to recovery from this conflict, parents in this area face more stigmatisation because of negative cultural beliefs about the impairment (bannink et al. 2015). this is likely to increase stress and have more need for support from other parents as expressed in the interview and focus group discussion findings. we did not find differences between mothers and other caregivers in the stress levels. mothers are often at higher risk for parenting stress than fathers because of role differentiations in care and work (vermaes et al. 2008). kanaheswari (2011) found that mothers who were the sole caregiver had higher parenting stress scores in the p-cdi domain (kanaheswari et al. 2011). in our study, we did find that having support from another adult contributed to less stress. support here was described by parents as household support and caregiving support at home, for example through a house help or relative. this support reduced dysfunctional interaction between parent and child. parents who were a member of a parent support group felt this helped them in taking better care of their child and felt encouragement from other parents. persons with disabilities typically live in poorer than average households and have lower educational attainment (emmett 2006; filmer 2008; lwanga-ntale 2003). the monthly income of families in our study ranged from $28 $689 with a median of $82 (income derived from all sources includes wages, market sells, cattle, land and other assets). this is much lower than the total national average of $156 (converted from ugandan shillings), although closer to the average rural income of $112 and regional variations (uganda bureau of statistics 2014). although no significant effect was seen on parental stress in the regression analysis, looking after a child with spina bifida raises financial costs for families in terms of medical treatment, rehabilitation and transport. correlations were found between having higher income and school going, the use of assistive devices, receiving rehabilitation services, using catheterisation and having support from another adult. whilst each of these factors on their own may not contribute to parental stress, parents with higher household income are expected to be able to respond to their children’s medical needs better than those who have less. parents who participated in parent support groups indicated that they benefitted from income-generating activities that the group organised. we noted that less than half of the participants’ children had both spina bifida and hydrocephalus. given the earlier established rates of 66% hydrocephalus in children with spina bifida (warf et al. 2011), this is low. we suspect that more children with hydrocephalus died compared to children with only spina bifida, as shunt complications and failure is high and life threatening, especially in rural areas. whilst warf et al. (2011) found no relationship between survival and presence of hydrocephalus, we suspect this may have an effect for the older group of children targeted in this study, especially those living in hard-to-reach areas (warf et al. 2011). participation in parent support groups did not make significant changes in parental perceived stress in the quantitative outcomes. however, from the qualitative outcomes, we see that the sense of belonging and being able to share was an important support for parents and enabled them to cope with stress better. malm-buatsi et al. (2015) found that involvement in recreational activities with other families affected by spina bifida was associated with more positive parenting characteristics. our study did not consider parenting styles, but did receive positive feedback from parents about improved interaction with their child after having participated in parent support groups. lack of knowledge and acceptance of a child with spina bifida may lead to neglect. parent support groups aim to raise awareness and support for parents to look after their children positively. warf et al. (2011) described finding situations of child neglect during home visits in the eastern region. this study was limited by involvement of parents of only those children who were receiving or are attending follow-up and rehabilitation care. this means we interviewed those who may have been doing ‘better’ than others, as we only found those whose children accessed surgical care and survived. although the impairment factors and support explained some of the parental stress, a large part remained unexplained in our study. we expect that a complex combination of child, parent, family and environmental factors may contribute to parental stress in a low-income setting. vermaes et al. (2005) found that a combination of these factors explains parents’ psychological adjustment. further studies need to be conducted to understand the interaction between poverty, survival and functioning of children with spina bifida and their parents in low-resource settings. participation in parent support groups could be a protective factor for the child, reducing child neglect. we suggest analysing this contribution in greater detail and tailoring interventions to raise awareness and to take prompt action of support networks and state actors to ensure child protection and care. studies on parental characteristics and coping styles could help inform supportive activities further. within the ugandan setting, we argue for more investment in community-based rehabilitation to improve mobility and care for children with spina bifida and their parents. sensitisation, especially in areas where stigmatisation appears high such as the northern region, is recommended. we recommend continuous support and creation of peer support networks for parents from government and civil society. we argue for awareness raising on spina bifida to increase engagement of relatives, house helps and community members in the care of children with spina bifida. we believe this will help reduce parental stress and improve the quality of life of both children with spina bifida and their parents. conclusion parents of children with spina bifida experience high levels of stress. the degree of such stress is partly influenced by the level of impairment and need for parental involvement in care, support received from other adults and area of residence of the family. to reduce the parental stress, rehabilitation services should focus on improving mobility, advocacy to reduce stigmatisation and strengthening in communities and developing peer support networks. acknowledgements the authors thank all parents of children with spina bifida and hydrocephalus, staff of cure children’s hospital uganda, gulu regional orthopaedic workshop and rehabilitation center/avsi foundation, katalemwa cheshire home and our useful rehabilitation services for their participation in this study. our gratitude goes to the international federation for spina bifida and hydrocephalus and the if uganda office for their support. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions f.b. participated in formulation of the research question, collected and analysed the data, and drafted the manuscript. r.i. participated in formulating the research question, study design, supervised data collection and analysis, and contributed to the writing of the manuscript. g.v.h. supervised and participated in formulating the research question, study design, data analysis and writing the manuscript. references abasiubong, f., obembe, a. & ekpo, m., 2006, ‘a controlled study of anxiety and 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warf, b.c., wright, e.j. & kulkarni, a.v., 2011, ‘factors affecting survival of infants with myelomeningocele in southeastern uganda’, journal of neurosurgery pediatrics 7, 127–133. wiegner, s. & donders, j., 2000, ‘predictors of parental distress after congenital disabilities’, journal of developmental & behavioral pediatrics 21, 271–277. abstract introduction research methods and design results trustworthiness discussion limitations of the study conclusion future work acknowledgements references appendix 1 about the author(s) sara munera el comité de rehabilitación, medellin, colombia mary goldberg rehabilitation science & technology, university of pittsburgh, united states human engineering research laboratories, department of veterans affairs, united states krithika kandavel rehabilitation science & technology, university of pittsburgh, united states human engineering research laboratories, department of veterans affairs, united states jonathan pearlman human engineering research laboratories, department of veterans affairs, united states department of rehabilitation science and technology, university of pittsburgh, united states citation munera, s., goldberg, m., kandavel, k. & pearlman, j., 2017, ‘development and evaluation of a wheelchair service provision training of trainers programme’, african journal of disability 6(0), a360. https://doi.org/10.4102/ajod.v6i0.360 original research development and evaluation of a wheelchair service provision training of trainers programme sara munera, mary goldberg, krithika kandavel, jonathan pearlman received: 16 dec. 2016; accepted: 18 june 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in many countries, availability of basic training and continued professional development programmes in wheelchair services is limited. therefore, many health professionals lack access to formal training opportunities and new approaches to improve wheelchair service provision. to address this need, the world health organization (who) developed the who wheelchair service training of trainers programme (wstpt), aiming to increase the number of trainers who are well prepared to deliver the who wheelchair service training packages. despite these efforts, there was no recognised method to prepare trainers to facilitate these training programmes in a standardised manner. objectives: to understand if the wstpt is an effective mechanism to train aspiring wheelchair service provision trainers. method: an action research study was conducted using a mixed-methods approach to data collection and analysis to integrate feedback from questionnaires and focus groups from three who wstpt pilots. results: trainees were satisfied with the who wstpt and the iterative process appears to have helped to improve each subsequent pilot and the final training package. conclusion: the who wstpt is an effective mechanism to train wheelchair service provision trainers. this programme has potential to increase the number of trainees and may increase the number of qualified service providers. introduction literature review of the world’s population, approximately 15% have a disability and 1% need a wheelchair (world health organization 2008), with a higher prevalence among people in developing countries (the world bank 2015). unfortunately, only 15% of those needing a wheelchair actually have one (world health organization 2011), even though literature demonstrates the importance of using wheelchairs to access the right of personal mobility and other human rights (borg et al. 2012; may-teerink 1999; shore 2008). this issue will be more prevalent in coming years because of the ageing of the world’s population (lee 2003) and the global increase in chronic health conditions (world health organization 2011). according to the united nations convention on the rights of persons with disabilities (uncrpd) (united nations 2006), people with disabilities have the same rights, and should have equal opportunities like any other citizen. wheelchairs and their related services are an important way to access the right of personal mobility. as stated by borg et al. (2012), to support the implementation of the uncrpd, research related to policies, service delivery, outcomes and international cooperation are needed. negative consequences can occur from not having an appropriate wheelchair, or receiving a wheelchair without the related recommended services. these consequences include the development of pressure sores, bad posture and low independence and self-esteem (world health organization 2012). this may also cause an impediment to education and employment because of the lack of appropriate assistive technology to enable social participation (mcclure et al. 2009). according to the world health organization (who), significant barriers to the human right of personal mobility include discrimination against people with disabilities and a lack of trained wheelchair service personnel (world health organization 2008). to date, there is a gap in the literature related to how service provision occurs globally, but studies from various contexts recognise a need to improve it (toro et al. 2012, 2016). to prevent these negative consequences, wheelchairs need to be delivered by people who are trained in an appropriate manner. situational awareness: too few people are trained in wheelchair service provision, resulting in poor-quality wheelchairs and services in 2008, the who published the guidelines for the provision of manual wheelchairs in less resourced settings (world health organization 2008). the aim of the document was to ‘promote personal mobility and enhance the quality of life of wheelchair users by assisting member states in developing a system of wheelchair provision’. the guidelines describe eight steps to facilitate appropriate wheelchair provision (referral, assessment, prescription, funding and ordering, product preparation, fitting and adjusting, user training and follow-up, maintenance and repairs) (world health organization 2008) and served as the foundation for the development of the wheelchair service training packages (who wstp) (world health organization 2012, 2013). the who wstp aims to improve wheelchair service provision, mainly in developing countries, to support the minimum skills and knowledge required by personnel involved in wheelchair service delivery at both the basic and intermediate level (world health organization 2012, 2013). the following training packages were published to meet this goal: wstp-basic in 2012, intermediate in 2013 and managers and stakeholders in 2015. despite progress made by the who, limited coordination and training, as well as consistency in service provision efforts exist for less resourced settings. in these areas, research demonstrates challenges in wheelchair service delivery as well as dissatisfaction with wheelchair design and services (visagie et al. 2015a, 2015b). a study conducted in south africa revealed gaps between guiding documentation and service delivery in six out of the eight who steps. this suggests that in at least one area, despite having the who materials as reference material, because of contextual issues, service provision steps might not be adhered to consistently (visagie et al. 2013). however, another study in zimbabwe concluded that a comprehensive wheelchair service programme focused around training and proper service provision resulted in significant positive changes in user satisfaction with the wheelchair, and wheelchair services (visagie et al. 2016). this suggests a wheelchair, when provided in an appropriate manner by a properly trained service provider, may help a person with a mobility impairment gain greater personal mobility and help fulfil other basic human rights. researchers have studied the importance of wheelchair training, mainly related to wheelchair skills (best et al. 2005; bonaparte et al. 2004; coolen et al. 2004; kirby et al. 2008, 2015) and wheelchair maintenance (toro 2015). training of trainers programmes have also been studied and proven to be effective in increasing competence and confidence in trainees (smith et al. 2014). this model of training has proven to be cost-effective and sustainable in different settings and with multiple types of trainees, including service providers (suhrheinrich 2014). to date, the efforts to train trainers in wheelchair service delivery have not been comprehensively described in the literature. there are other entities delivering trainings in wheelchair service provision globally, including universities, non-governmental organisations (ngos) and humanitarian organisations. unfortunately, most of these organisations use different curricula and training methodologies without any standardisation (free wheelchair mission 2016; lds 2012; motivation 2015, ucp wheels for humanity 2016). the same problem exists in the way wheelchair service providers and trainees’ knowledge is measured (gartz et al. 2016). as a response to the lack of professionalisation and standards across the wheelchair sector, the international society of wheelchair professionals (iswp) was established. this organisation is working to increase awareness about wheelchairs and related services, establish product and service standards and coordinate training initiatives (international society of wheelchair professionals 2017). iswp recently developed and validated a basic wheelchair service provision test as a method to measure competency (gartz et al. 2016). iswp is leading a follow-on effort to develop an intermediate wheelchair service provision test and will be undergoing similar validation steps as conducted at the basic level. a possible solution: development of a draft training of trainers programme and recognition process even with the advent of standardised wheelchair service training materials by the who and assessments by iswp, to date there is no recognised method to prepare a cadre of trainers to facilitate the who wstp trainings in a standardised manner and build capacity in service provision globally. thus, the who wstp who wheelchair service training of trainers programme (wstpt) was drafted as a next step in the who wstp and iswp professionalisation process, to build off of the foundation created by the basic and intermediate training programmes and assessments, respectively. the development of this training programme started in 2014 with a goal to increase the number of qualified trainers to facilitate the who wstp (including basic, intermediate and managers and stakeholders) globally and encourage the proliferation of more qualified service providers. the who wstpt package, as well as the training process, was developed by experts using an iterative process that included material development by an expert panel and, later, a multi-stakeholder review to provide recommendations on prelearning materials and all session plans. topics such as adult learning principles, diversity and cultural competency are included in the who wstpt, as well as the use of a variety of audio visual tools to appeal to trainees with different learning styles. the who endorsement and publishing process ensures the training package was developed using a high-quality methodology and a transparent process (world health organization 2016) and allows the programme to be marketed on the who site, distributed to member states and partners and remain open-access. the training is designed to be held over a five-day period where the first two days focus on core knowledge to improve training skills. during the last three days, trainees have a practice delivery experience, in which they deliver, as lead trainers between two to four sessions, and serve as support trainers on three to five sessions for other trainees. upon completion of the five-day session, the who wstpt materials then encourage trainees to participate in co-training sessions with experienced trainers. iswp, similar to the assessments it developed to accompany the basic and intermediate levels, developed a comprehensive trainee competency assessment (tca) tool especially for this programme to assess the ability of new wstp trainers against a set of eight preset competencies. the tool, encompassing a three-point scale and eight competencies, was developed in concert with the who wstpt materials and validated by an expert panel of nine individuals from five different countries. the competencies include preparation, time management, delivery of wstp materials, presenting, facilitating, giving or receiving feedback, managing group work and communication (where culturally appropriate). the tca (see copy in appendix 1) was designed to be used as the assessment for the iswp trainer recognition process, as who as an entity does not certify, recognise or assess individual competency in wheelchair service provision. the tca is used by trainers in both the training and co-training to assess a trainee’s delivery skills. the trainer gives the trainee the completed tca at the end of both the training and co-training. the iswp trainer recognition process was also developed by the expert panel and as an example, the iswp basic level trainer pathway is demonstrated in the flow chart as shown in figure 1. similar paths exist for both the intermediate and managers and stakeholders levels. if a trainee receives an average score of 2.5 or higher on the tca as rated by his or her trainer from both the wstpt and the co-training (may be the same or different people), they are recommended to advance through the process and receive iswp trainer recognition status, respectively. figure 1: iswp training recognition pathway. while the draft who wstpt and iswp trainer recognition process both serve as possible avenues to increase the number of trainers worldwide, prior to this study, neither had been evaluated. therefore, an action research study, with one primary research question, was initiated by a team of colleagues to assess and potentially improve upon the who wstpt and iswp trainer recognition process. research question: is the who wstpt, including the who wstpt materials, an effective mechanism to train aspiring wheelchair service provision trainers? research methods and design as defined by reason and bradbury (2001): ‘action research seeks to bring together action and reflection, theory and practice, in participation with others, in the pursuit of practical solutions to issues of pressing concern to people, and more generally the flourishing of individual persons and their communities.’ (p. 3) action research can be particularly effective in the evaluation of training programmes and has been well documented in the literature where an iterative process with continuous feedback from trainers and trainees can improve training initiatives based on experience (lecompte & preissle 1993; milano & ullius 1998). mezirow (1991) identifies three forms of reflection: content, process and premise, where content reflection is the substance; process reflection is the strategies, procedures and how things are being done; premise reflection is the underlying assumptions and perspectives (mezirow 1991). therefore, an action research study was designed using a mixed-methods approach to data collection and analysis to integrate feedback from questionnaires (surveys and forms) and focus groups to evaluate the wstpt programme content, wstpt and iswp trainer recognition processes and overall premise to determine stakeholders’ perspectives. in order to develop this action research project, the who wstpt was facilitated across three pilot sites using the who wstpt materials and iswp training recognition process (including the tca). the pilot sites were selected based on strong in-country partner organisations and access to participants with satisfactory english language proficiency. likewise, an effort was made to select culturally diverse and different socioeconomic settings to test the generalisability of the training and assessment methodology. thus, nairobi, kenya (lower-middle income), cape town, south africa (upper-middle income), and bangkok, thailand (upper-middle income), were identified as meeting all criteria and were selected for the three pilot sites to be conducted in 2016. in each of the three pilots, trainees were recruited from rural, peri-urban and urban settings. additionally, while the same materials were used for the core in each pilot, different modules of the wstpt (basic, intermediate and managers and stakeholders) were facilitated to further test generalisability of the method itself. for pilot 1 in kenya, the options were wstpt basic and managers and stakeholders, for pilot 2 in south africa, wstpt intermediate and managers and stakeholders were held, and for pilot 3 in thailand, wstpt basic and intermediate were facilitated. up to 25 trainee subjects were recruited for each pilot. trainees’ inclusion criteria were (1) satisfactory english language proficiency, (2) currently working in the area of wheelchair service provision and (3) passed the iswp basic wheelchair service provision test (gartz et al. 2016). secondary criteria included residency in or ability to train in the region where the pilot was held. the research team was not involved in running the training or selecting the trainees to help ensure independent and objective feedback. as described in the abstract background section, the pilot training followed the wstpt methodology of five days of training including a mix of didactic training on adult learning theory and wheelchair service provision and practice delivery sessions. following best practice in action research (french 1999; lewin 1946; reason 2001), an iterative approach that solicited feedback from trainers, trainees and observers was employed to improve the methodology and material, so that feedback could be reflected upon by the joint team and used to immediately improve the subsequent training. the following data collection methods were employed: trainee satisfaction surveys, tca forms (completed by trainers during each of the trainees’ practice delivery sessions) and focus groups of both trainees and trainers. table 1 describes each data collection tool or method. table 1: data collection methods. results as described above, the pilot trainings were held in nairobi, kenya, cape town, south africa, and bangkok, thailand, and had an average of 5 trainers, 22 trainees and 6 observers to participate in each training. table 2 shows the number of attendees at each training. table 2: roles and number of attendees for each training. the role of the trainers, who were all advanced-level wheelchair service providers and experienced who wstp trainers, was to deliver the content outlined in the wstpt training package according to the guidelines. the observers, all experienced evaluators from iswp and other ngos in the wheelchair sector, were assigned to take notes during the sessions and evaluate what could be improved for next trainings in terms of content, time and methodology. the observers from iswp were also responsible for collecting each of the metrics including trainee satisfaction surveys and tca forms. data from observers and the tca will be included in a future manuscript. figure 2 presents select satisfaction survey results from the three pilots and suggests that trainees were satisfied with the overall programme content, trainee handbook, facilitation by trainers and feedback process. in general, most of the responses were clustered around ‘good’ ‘very good’ and ‘excellent’. there was some discrepancy with trainees’ perception of the length of the training day, with only 30% suggesting it was ‘very good’ or ‘excellent’. the ‘overall programme content’ item was consistently rated ‘very good’ on average across all the three pilots. the ‘facilitation by wstpt trainers’ item was also consistently rated ‘excellent’ across all the three pilots. figure 2: trainees’ average satisfaction ratings across pilot 1 (nairobi), pilot 2 (cape town) and pilot 3 (bangkok). according to the self-assessment question (‘how confident do you feel to deliver the who wstp?’) that was asked on the trainee satisfaction surveys, there was an increase in confidence to deliver the training after the who wstpt (as shown in table 3). the percentage increase represents the difference between the mean scores before and after the training. participants reported an average of 80.6% confidence to deliver the who wstpt after the training. table 3: self-perceived confidence to deliver the who wstpt. qualitative feedback was collected from trainees from both trainee satisfaction surveys and focus groups after every who wstpt session. for the satisfaction survey data, one iswp researcher who also served as a wstpt observer analysed and grouped comments into five themes through a first and second cycle coding method based on frequency of occurrence (saldaña 2015): knowledge, resources, feedback process, trainers and significance of the training. table 4 includes some of the most frequent comments from trainees in different pilot locations. table 4: frequent themes from trainees from satisfaction surveys. the other qualitative data were obtained from trainee focus groups conducted by a professional coach or observer from the who wstpt stakeholder author group. while some programme modifications were derived from trainee feedback from the satisfaction surveys, the majority of modifications were made based on trainees’ focus group feedback, as these sessions focused specifically on what could be done to improve the programme. recommendations and changes to improve the programme were collected through focus group sessions at the end of each training day, as well as summative focus groups on the last training day. notes were taken by both an iswp researcher and the other programme observers and provided to the lead trainers. this allowed real-time changes to the programme content to occur both within a particular training as well as more systematic changes for the next pilot. a summary of these recommendations and modifications is shown in tables 5 and 6. table 5: modifications made during the second pilot based on the first pilot feedback. table 6: modifications made during the third pilot based on the second pilot feedback. trustworthiness the results of this study were based on an independent evaluation of the who wstpt and the iswp trainer recognition process. while the evaluators were collaborators of the stakeholder author group, they were not involved in the design of the who wstpt materials or process. the evaluators provided feedback into the iswp trainer recognition process and tca, but were not involved in completing any tcas (the trainers completed these on behalf of the trainees). it is possible that because of the evaluators’ involvement in the iswp trainer recognition process and tca, trainees may have felt slightly inhibited in sharing candid feedback through both surveys and focus groups. the reliability of the qualitative data from the satisfaction surveys was strengthened through first and second cycle coding by a single researcher, where themes were later verified by looking at separate passages of data. where new themes emerged, they were added, and then the same process was repeated. a second researcher reviewed the themes and illustrative examples for consistency and repeated the same process. a participant–observation ethnographic approach was taken to conducting and observing the focus groups. the iswp researchers who were involved in the focus group were considered to be a part of the community and the facilitators (professional coach or observers) had a generally strong rapport with the trainees as well to support a community of sharing. in this way, we believe that the trainees were open to sharing candid feedback because of the opportunity they had to improve the programme experience for future trainees and the betterment of the wheelchair sector as a whole. the trainees’ illustrative passage in table 4 provides evidence of this belief. the tca was reviewed for content validity by both the evaluators and stakeholder author group (authors and editors of the who-wstpt material) and underwent several revisions. prior to this study, the tca has not been reviewed for intraor interrater reliability; however, once the content and scoring is updated based on this action research study, both intraand interrater reliability will be conducted. discussion in response to our research question, there is ample quantitative and qualitative evidence to suggest that the who wstpt and its materials are an effective mechanism to train aspiring wheelchair service provision trainers in terms of both process and content. this is demonstrated through gains in trainee knowledge, skill and confidence. first, the who wstpt seems to have increased trainees’ wheelchair services training knowledge and skills. as suggested by a trainee from nairobi: ‘the whole process helped. watching the trainers and […] other colleagues, trying to apply these […] on your training.’ therefore, trainees seemed to value the process with the opportunity to first learn the content and later practise skills by modelling trainer behaviour. in line with research on how to improve wheelchair services, even experienced trainees gained new knowledge and skills through the training (visagie et al. 2015a, 2015b; world health organization & imperial college london 2015). for example, one trainee cited: ‘we have been training and we think we are good but then we learn we’ve been making mistakes and we know we need to work on this or this.’ this is an important finding, suggesting that the wstpt can be used as both initial training and continued professional development for experienced trainers as research suggests that the quality of teaching depends on teachers continuing to learn as teaching contexts, student behaviour and expectations of teachers change (day 1999). in other words, the range of wheelchair service provision contexts, knowledge and skill wheelchair service providers possess and expectations thereof that are placed on trainers will only continue to expand in coming years. likewise, trainees’ feedback also suggested that the who wstpt has adequate content to accomplish its goal of improving knowledge. for example, ‘it is a very informative package and learnt a lot from the programme.’ the exercise of providing feedback seemed to be a particularly helpful component and part of the process as it allowed trainees to recognise their strengths and areas of improvement, as suggested by trainees: ‘every trainee was able to know his strength and weaknesses.’ feedback makes it possible to become better and also help others better their skills. peer feedback was found useful, but according to trainees: ‘one-on-one feedback provided more insight towards improvement.’ second, the who wstpt seems to have increased trainees’ confidence to deliver the who wstp. for example, one trainee cited about the whole process that: ‘the programme is good and it prepares well.’ training confidence could be especially important when it comes to co-training in trainees’ home countries. the replication of trainings in different settings could increase awareness about the importance of wheelchairs and wheelchair services to improve social participation, as well as the steps to ensure adequate wheelchair services. for example, one trainee cited: ‘in our own country we have a big population and most people are distributors of the chairs they don’t know. so this is very helpful for us to make a plan for awareness.’ while the training process was helpful as described above, the training content also seemed to be helpful for trainees to learn how to deliver trainings. the trainee handbook was particularly valuable according to trainees in nairobi: ‘it was perfect – it’s the best part of the training resources.’ it was an important resource, according to trainees as it ‘points out key learning/preparation points and all corrections for errors in the manual.’ trainees in cape town reiterated that the handbook ‘provided essential guidelines which to me effectively helped in understanding better the programme.’ while results were somewhat uniform across the pilots and supported the effectiveness of the who wstpt, more positive comments were received from the trainings with trainers who had more experience, as suggested by these sample comments: ‘trainers have been excellent in their presentations.’ ‘they took time to clarify aspects which helped me to understand the content.’ ‘trainers gave a good example and role modelling.’ additionally, experienced trainers allowed for more peer interaction and social construction of knowledge as suggested by this trainee: ‘they also allowed room for shared experiences, they were not uptight and available for consultation and feedback.’ this may suggest a need for a recommendation from iswp on who is prime to lead who wstpt based on their experience, and how aspiring who wstpt trainers can gain skill and experience to enable them to best prepare trainees. in summary, the who wstpt appears to support emerging trainers’ knowledge, skill and confidence to deliver trainings in support of an affirmative answer to our research question, which investigated the overall programme effectiveness. the iterative action research approach to this study may have resulted in improved satisfaction scores and more complimentary trainee comments with each who wstpt iteration, suggesting the intervention improved over time and as a result of the feedback received. these findings relate to previous research suggesting the importance of an iterative approach to developing training programmes (milano and ullius 1889). this research can help propel the wheelchair sector forward to encourage more and better prepared trainers to support trainings in more regions and improve wheelchair service delivery in order to support the implementation of the uncrpd (borg, lindström & larsson 2011). limitations of the study this action research study resulted in several practical improvements to the who wstpt but has several limitations including how data were collected, by whom the data were collected and generalisability of data. first, because of the incremental nature of the programme and evaluation approaches, data were not collected in a uniform way in terms of both data collection tools and subject groups, which may bias the interpretation of changes implemented between pilots. the data collection tools, along with the training content itself, were iteratively modified between pilots, making direct comparisons challenging. while trainee satisfaction surveys did not include names, one sheet was collected per trainee to ensure that feedback was obtained from each trainee (one sheet per trainee). because of this, trainees may have been compelled to respond in a more favourable manner, knowing that while anonymity was encouraged, it may not have been guaranteed. second, the author group (authors and editors of the who wstpt material) observed sessions they authored and occasionally trained on sessions they did not author, which may have biased their interpretation of participant learning outcomes, feedback provided during focus groups and the way the trainees learned the material. this may also threaten generalisability of the approach as the author group has an informed perspective that another trainer in the field may not. similarly, both author group members and trainers from the other pilots served as observers, either at previous or subsequent trainings. therefore, they also had an informed perspective related to the type of feedback provided based on their prior experiences and knowledge of the package, as well as potential undue influence of the performance of both trainers and trainees. the trainer’s teaching style and performance were not specifically monitored or assessed which could have also limited how and what the trainees learned. third, because the training and evaluation was conducted on a relatively small sample, in only three geographic locations, and solely in english, the results may not be generalisable beyond the settings in which the study was conducted. thus, the assumption of modifications leading to improvements is a limitation to this study, as some changes that were suggested by stakeholders may be limited to a particular region or not universally valuable. after finishing the who wstpt training, and as a formal part of the process, trainees are recommended to co-train with a more experienced trainer on the package they are learning to train (basic, intermediate, managers or stakeholders). this study only focused on evaluating the who wstpt training component, in part because of funding restrictions which has limited the opportunity to support trainees in co-training experiences. therefore, an additional limitation is that the results solely reflect a component of the who wstpt, and not the full programme. similarly, if co-trainings continue to not be available, trainees will struggle to complete the full programme as intended, limiting its utility to the practical goal of proliferating trainers prepared to facilitate the who wstpt. conclusion the iterative action research approach used to evaluate the who wstpt demonstrated an improvement of the training programme content and process from one pilot to the next. the who wstpt appears to be successful in increasing trainees’ knowledge, skills and confidence to deliver trainings prior to the trainees’ co-training experience. this standardised training package, by increasing the number of trainers conducting who wstp worldwide, may assist in training wheelchair service providers uniformly and appropriately to ensure that wheelchair users are provided with high-quality service and products. future work future work will include how to improve the content of the who wstpt, including exploring other training of trainers materials to identify different ways to improve engagement and peer interaction, relevance and value of ‘modelling’ good trainer techniques, as well as knowledge sharing tools and methods. feedback from participants or trainers of other training of trainers programmes in healthcare may also provide helpful feedback, because they would have a basis of comparison that would not be possible for our population who is unlikely to have completed another training of trainer programme in any healthcare field. the impact of the wstpt varied between experienced and inexperienced trainees but this finding was not further explored in this study. more research is needed to better understand this difference and promote better skills for those who are less experienced. mentoring may serve as a mechanism to fill this gap and should be further explored. additionally, we plan to further explore trainee outcomes. to date, 17 trainees have completed co-trainings, and at least 10 trainees have co-trainings planned by june 2017. this is a disparity in the who wstpt, as suggested above that a co-training is a required component. additional data will be collected on this process and tca forms will be analysed. future analyses may compare trainee performance on tcas across pilots, future trainings, different geographic areas and whether differences exist based on important participant characteristics such as education and experience level, english language proficiency, the type of organisation they represent and whether learning outcomes vary based on particular trainee learning style. to make the who wstpt accessible to a broader set of wheelchair service providers, additional languages and validation processes are needed. research is recommended to monitor the overall implementation of the training and measuring the effect it has on trainers, service providers and ultimately wheelchair users. this may include how trainees have used the who wstpt skills and research to identify if the programme has significance in increasing the number of trainings that are being held, the quality of those trainings, how training impacted trainees long-term and ultimately the wheelchair delivery process. acknowledgements the work was undertaken as a part of the msh collaboration under the leadership, management and governance project and was supported by funds from the united states agency of international development. we thank the world health organization (who) for providing us with permission to use the who wheelchair service training package. competing interests the authors declare that they have no financial or personal relationship that may have inappropriately influenced the writing of this article. authors’ contributions m.g. and j.p. were the project leaders, s.m. and k.k. were part of the pilots. references best, k.l., kirby, r.l., smith, c. & macleod, d.a, 2005, ‘wheelchair skills training for community-based manual wheelchair users: a 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world health organization. world health organization, 2016, re: who | guidelines review committee (grc), geneva, world health organization. world health organization & imperial college london, 2015, elearning for undergraduate health professional education – a systematic review informing a radical transformation of health workforce development, geneva, world health organization. appendix 1 trainee/co-trainer competency assessment abstract introduction background materials and methods results ethical consideration discussion conclusion acknowledgements references about the author(s) jennifer t. muderedzi institute of clinical medicine, university of oslo, norway arne h. eide sintef technology and society, norway stine h. braathen sintef technology and society, norway babill stray-pedersen institute of clinical medicine, university of oslo, norway division of women-rikshospitalet; oslo university hospital, oslo, norway citation muderedzi, j.t., eide, a.h., braathen, s.h. & stray-pedersen, b., 2017, ‘exploring structural violence in the context of disability and poverty in zimbabwe’, african journal of disability 6(0), a274. https://doi.org/10.4102/ajod.v6i0.274 original research exploring structural violence in the context of disability and poverty in zimbabwe jennifer t. muderedzi, arne h. eide, stine h. braathen, babill stray-pedersen received: 11 apr. 2016; accepted: 19 dec. 2016; published: 18 apr. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: while it is widely assumed that disability, poverty and health are closely linked, research falls short of fully understanding the link. one approach to analysing the links between disability and poverty is through the concept of structural violence, referring to social structures that contribute to the impoverishment of individuals or communities. these structures can be political, ecological, legal and economic, among others. objective: to explore structural violence and how it affects families of children with cerebral palsy among the tonga ethnic group living in poor rural communities of binga in zimbabwe. method: this is a longitudinal, qualitative and ethnographic study. data were collected over a period of eight years from 2005 to 2013. data collection techniques were in-depth interviews, participant observation and focus group discussions. purposive sampling was used to recruit 53 informants. results: structural violence was noted through four themes: internal displacement and development, food and politics, water and sanitation, and social services. poverty was noted in the form of unemployment, lack of education, healthcare, food and shelter. the concept of structural violence inflicted social suffering on the informants. politics played a major role in activities such as food withdrawal, lack of water, development and allocation of local resources to ‘the people of the city’, leaving the informants struggling with care. conclusion: political and economic forces have structured risks and created a situation of extreme human suffering. the capabilities approach brings out the challenges associated with cerebral palsy in the context of development challenges. introduction the concomitant relationship between poverty and disability is well established in the literature (ansell 2005; emmett & alant 2006; palmer 2011; rousso 2003), and we are beginning to understand the complexities of the relationship. however, as meekosha (2011) and grech (2009) argue, literature in the field is often dominated by ‘northern’ perspectives that fail to understand the challenges associated with disability in the context of wider development challenges, and evidence is often anecdotal rather than evidence-based (groce et al. 2011). these links are more complex and nuanced than currently assumed (barron & ncube 2010; groce et al. 2011). what people can positively achieve is influenced by economic opportunities, political liberties, social powers, and the enabling conditions of good health, basic education, and the encouragement and cultivation of initiatives. the institutional arrangements for these opportunities are also influenced by the exercise of people’s freedoms, through the liberty to participate (sen 1999:5). graham, moodley and selipsky (2012) state that the reality for many people, and particularly for people living with disabilities, is that their capabilities are very much constrained, thus limiting their opportunities to achieve particular desirable functionings. different disabilities represent different impairments and challenges and it can be fruitful to differentiate and study disabilities and impairment categories separately to get more in-depth information. cerebral palsy is the most frequent cause of physical disability in children, occurring in approximately 2 to 2.5 per 1000 live births (who 2001) and 1.5 to 5.6 cases per 1000 live births in the developing world, with a higher incidence in boys than in girls (1.33:1) (stanley, blair & alberman 2000). burton’s (2015) study in botswana states a possible prevalence of up to 10 cases per 1000 births, resulting in a lot of children who are not able to reach their potential. common characteristics of cerebral palsy are loss of motor function, complications of epilepsy, vision, hearing, intellectual, stunting, speech and feeding problems, resulting in chronic conditions that need a lot of care. apart from physical problems such as muscle weakness, stiffness and clumsiness, people with cerebral palsy are also four times more likely than their peers to experience emotional and behavioural problems (sigurdardottir et al. 2010). it is therefore not surprising that cerebral palsy can have profound effects on the physical, social and emotional health and well-being of children and their carers (glenn et al. 2009). families of children affected by cerebral palsy were chosen for this particular study because of a high incidence as reported by village health workers in the study area. cerebral palsy is also particularly interesting because of the multiple impairments and challenges often associated with the condition. the purpose of this article is to explore how structural mechanisms play out and negatively affect families of children with cerebral palsy among poverty-stricken batonga in zimbabwe. background malnutrition, disease, less access to safe drinking water, inadequate sanitation, poor healthcare and a lack of rehabilitation services are all causes of disability in the developing world (qayyum, lasi and rafique 2013; saetermoe et al. 2004). regarding children with significant physical and sensory disabilities, it is recognised that with the right supports these children can have a better chance to live independent lives and contribute economically and socially to society. however, children with disabilities are often denied the right to basic education and healthcare, losing their chance to become independent (global partnership for children 2012; zinkin & mcconachie 1995). having a child with disability thus often leads to households experiencing multiple dimensions of poverty, causing them to go deeper into poverty and making it likely that they will never escape impoverished living (park, turnbull & turnbull 2002). the convention on the rights of the child (crc; un 1989) and the convention on the rights of people with disabilities (crpd; un 2006) state that children with disabilities have the same rights as other children to healthcare, nutrition, education, social inclusion and protection from violence, abuse and neglect. ensuring access to appropriate support, such as early childhood intervention and education, can fulfil the rights of children with disabilities, promoting rich and fulfilling childhoods and preparing them for full and meaningful participation in adulthood (simeonsson 2000). barriers such as inadequate services and lack of accessible environments create more problems for children with disabilities and their parents. if children with developmental delays or disabilities and their families are not provided with timely and appropriate early intervention, support and protection, their difficulties can become more severe – often leading to lifetime consequences, increased poverty and profound exclusion (united nations fund, world health organization & the world bank 2012). many children with disabilities in zimbabwe are failing to realise their full potential as they struggle to achieve basic human rights such as access to education and healthcare services (marongwe & mate 2007; muderedzi 2006; unicef-zimbabwe 2013). most research in zimbabwe has been carried out in typical communities where disability and poverty have been noted to be intertwined (marongwe & mate 2007; van der mark & verrest 2014). research on caregivers of children with disabilities in zimbabwe remains sparse, especially in remote rural areas where cerebral palsy is a common disability in children because of lack of health services as well as cultural and religious practices. most villagers’ poor economic situation, lack of road infrastructure, culture or religion restrict them from accessing health centres leading to giving birth at home and thus increasing risk of complications that can result in a cerebral palsied child (eide & ingstad 2011; muderedzi 2006). qualitative studies, for example, muderedzi and ingstad (2011) using the ‘ingstad and sommerschilds’ (1983) model for coping with disability, have gone further to show the relevance of cultural, political and structural phenomena in relation to disability and poverty. the model, though focusing on the individual, integrates explanatory variables outside of the individual. because of a small but growing evidence base indicating that there are substantial links between disability, poverty and health (groce et al. 2011), this article aims to bridge the gap in knowledge by exploring structural violence, the harm it causes and its effects on households of children with disabilities in poverty-stricken communities among the tonga in the north-west of zimbabwe. structural violence farmer et al. (2006) define ‘structural violence’ as one way of describing social arrangements that put individuals and populations in harm’s way. the arrangements are structural because they are embedded in the political and economic organisation of our social world; they are violent because they cause injury to people. structural violence addresses poverty and injustice and tries to understand the real dynamics of suffering and poverty, and understand political economy and how power works (farmer 2004). the concept was developed in relation to social suffering, power and inequality. it draws attention away from individual responsibility and increases understanding of how social experiences are being shaped through structural processes of historical, political and cultural context. tonga history of decades of chronic poverty and suffering called for the concept of structural violence to illustrate the links between disability and poverty. the tonga the tonga is an ethnic minority group in zimbabwe, living in binga district, on the north-west borders of zambia and zimbabwe. the forced displacement from the zambezi valley in 1957 for the construction of lake kariba caused a disruption in their socioeconomic and cultural environment as they were relocated to higher, dry country marred by low erratic rainfall, poor rocky and sandy soils, tsetse fly and mosquito infestation and marauding wild animals. out of the 59 districts in zimbabwe, binga has been the most neglected as it lacks essential services such as health, education, communication and agricultural development (mashingaidze 2013). swift and de graaf (1994) state that the tonga lived in a terrible state with 60%–80% child mortality because of lack of vaccinations, malaria, diarrhoea, tuberculosis, leprosy and bilharzia in the adult population. they suffer from acute food and water shortages and are heavily reliant on national and international food aid, resulting in them being labelled ‘donor dependent’ and ‘lazy’ by people who do not know their histories and biographies. the situation still prevails with new infections such as hiv/aids and communicable diseases. matabeleland north province where binga district is situated has the highest poverty rate in the country with 70% of its inhabitants classified as poor or extremely poor (basilwizi trust 2004; rural poverty portal 2015; zimbabwe national statistics agency [zimstat] and icf international 2012). materials and methods the study was longitudinal, qualitative and ethnographic in nature (sandelowski & barroso 2003; silverman 2013). the researcher returned to explore changes that occurred over time and the processes associated with these changes (farrall 2006). data collection techniques included 53 in-depth interviews, 20 participant observations and 10 focus group discussions conducted in the local language chitonga. the first cohort (2005) consisted of 30 infants (birth–5 years of age) of which 23 died during the first two years of the study from malnutrition, diarrhoea, malaria, meningitis and other infections. the second cohort (2012) consisted of 7 from the first cohort and 23 new recruits (8–13 years old). a pilot study was carried out before the main study. purposive sampling of 53 families was chosen because it illustrated some features or process in which we were interested (silverman 2013). caregivers were selected purposively based on the groups which the research question and theory addressed. informants were chosen on parameters such as tonga caregivers, children with cerebral palsy and age groups (birth–5 years; 8–13 years). caregivers were parents, grandparents, aunties and siblings who were selected to represent these different categories. forty were selected from the research assistant’s community and hospital list and 13 were through ‘snowball’ sampling using social networks of initial informants. three were child-headed families. to improve the likelihood of accuracy and objectivity, the project used a triangulation of three methods of in-depth interviews, participant observation and focus group discussions, as well as field notes and secondary data (documents). in-depth semi-structured interviews were conducted among all the 53 families to elicit information such as their experiences of life before and after having a disabled child, beliefs and attitudes towards disability, effects of caring for a disabled child and factors influencing the caring of the child such as social, economic or political. the aim was to encourage informants to speak personally and at length about their lives as caregivers. participant observation was chosen for its part as a process of enculturation (schensul, schensul & lecompte 1999) where the researcher absorbs the big picture and some details leading to an understanding of people’s daily lives, structure and events, social structure, expectations and values. it also allows for the juxtaposition of what people say they do and what they are observed to do. twenty informants were selected to participate. focus group discussions were used to assist informants to further explore and clarify their points of view. during in-depth interviews, the researchers stayed at clinics. participant observation was carried out during three days stay at an informant’s homestead with the researchers immersed in most activities of daily living (adl) such as fetching water and wild fruits, teaching handling techniques of the disabled child and community gatherings so as to gain more depth and insight into informants’ lives. this also allowed the researcher to meet the extended family and neighbours especially in the evenings where disability songs, stories and life in the zambezi valley were narrated. it is also important to note that family experiences of living with both disabled and non-disabled children were noted as the model used for the study (model for coping with disability; ingstad and sommerschild 1983) made the household unit the main focus of investigation including the community. data analysis data were translated into english and transcribed verbatim. the data were labelled through open coding, using conceptual categories to develop the codes (silverman 2013). the codes were derived both from the literature and the actual data (corbin & strauss 1990, 2008). this was read several times and factors that were associated with structural violence were identified. sen’s (1992) capabilities approach was used to demonstrate ways in which both disability and poverty compound one another to limit the capabilities of the informants. a ‘thank you’ token of $5 was given to each family during in-depth interviews. families who were part of the participant observation received $10 worth of groceries as they were hosting the researchers for three days. caregivers were given advice on child handling techniques and child care information. children with disabilities were shown how to carry out adl such as washing, dressing, feeding and mobility. referrals to specialists and health centres were not feasible because of caregivers’ economic hardships. results using the theoretical framework of structural violence in the context of disability, factors that affected families of children with disabilities and seen to cause social suffering were identified as follows: internal displacement and development, food and elections, water and sanitation, and social services. internal displacement and development the ‘river’ tonga (generation evicted from the zambezi valley in 1957) stated how the forced displacement from the ecologically rich river plains to dislocated communities had disrupted their socioeconomic and cultural environment. the tonga are forced to share the district with wildlife that escapes from the nearby game reserve. elephants are known to attack and kill villagers as well as destroy their harvests. drought conditions account for hunger and famine episodes affecting both humans and livestock with lack of food and water. the floods destroyed their ancestral burial grounds and effectively disrupted their whole way of life. they were completely cut off from family and friends living across the river in zambia. most of them reported of not being able to take part in ceremonies to commemorate their ancestors for protection and other misfortunes stating that their gods never helped them again, stating: ‘more attention was paid to the animals and rescuing them than us. … some people were attacked by wild animals in the open spaces. … we can no longer perform traditional ceremonies in honour of our ancestral spirits (mizimu) – the river connected us to our relatives and friends (bamutala) on the other side of the river.’ (an old grandfather, in his 80s, married with five wives) ‘we had a good life. the soil was fertile and we had more water than we needed. we grew corn, sweet potatoes, bananas, vegetables and other crops. we had plenty of fish and wild animals for food. life in kasambabezi (zambezi valley) was good.’ (old grandmother, partially blind, in her 80s) drought conditions accounted for hunger and famine episodes affecting both humans and livestock with lack of food and water. most young men stated: ‘the zambezi river is our only salvation … there should be unhindered access to it, but the problem is that the tonga are virtually barred from fishing from it because of prohibitive levies and this is driving poverty levels up. instead the river is now benefitting fishers and traders from the cities and towns who have the money to pay levies.’ (young, unemployed, married man in his 30s, with three children) displacement resulted in the loss of unity and togetherness leading to lack of much-needed help and support from the extended family, especially young families with a disabled child who needed constant healthcare support with traditional medicines. reports of negative impacts on social functioning because of long distances and wild animal attacks were reported as causing anguish especially to informants who had to carry the older disabled child on their backs as well as those residing in remote mountain areas. social isolation was reported by many of the informants. a mother in her 30s with four other children stated: ‘he is always sick. i have to stay at home most of the time when my husband visits our relatives and friends. … my lower back hurts each time i carry him for long distances, so visiting relatives in not possible. … i sometimes feel depressed and find it difficult to cope, if only my sisters lived nearby they could help us. … i am always tired but it’s ok. he is my child.’ (a mother, in her 30s, with four other children) the ‘river tonga’ women lamented their lost fertile land that enabled them to produce two harvests per year resulting in plenty of food and no famines. the tonga reported of the authorities not allowing them to participate in decisions relating to the evictions and the resettlement. development projects such as fisheries, tourism, wildlife, timber resources, minerals, electricity generation and employment, which could have improved their lives through good nutrition, education, healthcare, electricity, modern shelter with water and sanitation facilities, were not availed resulting in chronic poverty. the dam was not effective for the displaced did not enjoy the benefits. they reported of not receiving any compensation to date. the country’s socioeconomic development has eluded the district leading to subsistence activities of farming, collection of forest produce (famine foods) and non-governmental organisation (ngo) food aid. poverty, unemployment and lack of road infrastructure and social services resulted in increased disability incidences, disease or death because of lack of access to healthcare and government health programmes. some of the informants stated: ‘if one of us, falls sick, they will die. … my wife and baby died during labour for lack of transport and road infrastructure to the nearest health centre (20 kilometres away) … my son cannot walk, he is not able to go to school and will never have a job.’ (man in his 50s, married, with two wives and nine children) ‘he is not able to sit unaided, crawl or speak. he has no head control and has to be carried all the time. … he cries a lot during the day and worse still at night. i cannot sleep most nights. … he drools all the time, cannot feed properly, and it takes a long time to feed him. i wish i had proper food to feed him. look, he is small for his age.’ (married woman, in her 20s, with two other children) people in general and more so disabled children, found the narrow winding paths extremely difficult to negotiate their way to school, healthcare and visits to friends and the extended family. most disabled children not attending school stated: ‘i cannot run away from elephants when they attack children from school. … we have no food or water to take to school. … the school is very far. … my parents cannot afford the school fees. … there are no bridges on the rivers for us to cross safely to school.’ (100 year-old, boy, with difficulty in walking) the four disabled children who were attending school in the district were illiterate because of lack of special needs schools and teachers. as a result, there was no child who managed to finish primary school education. exclusion and discrimination deprived the disabled child from attaining an education and future employment. generally, binga lacks educational facilities for all. the extent of their deprivation and suffering was noted in their new location, poor livelihoods and few resources. the government seemed to care more for the wildlife in the game reserve by providing water holes and fencing although some were breaking down leading to wildlife invading the communities for food and water. food and politics when asked for urgent intervention on food shortages, one government minister stated: ‘most of these ngos play politics with food and they might as well use the food handouts to influence our people to vote for the imperial lapdogs, the mdc. we are busy with senate elections and after that we will look at the situation. but it should not be lost that we have the capacity to feed our own people.’ (zimbabwe print media, 14–20 october 2005) in contrast, informants were stating: ‘quelea birds destroy our fields every year. … we were not threatened by elephants before, but now they are everywhere. we no longer bang empty tins to scare them away lest we anger them, but watch as they descend on our fields and graze on our crops … with drought persisting, the number of deaths may increase still more as elephants and humans compete for resources.’ (40-year-old married man, with 10 children and 2 wives) ‘we now have one meal a day. … we no longer have the staple food of maize or sorghum. … we are surviving on wild leaf okra without the starch. … we last had something to eat two days ago. … we have no proper food to feed the disabled child. he cannot chew the wild fruits or dried game meat.’ (a mother, in her 30s, married with four other children) the study showed an excessively high infant mortality (23 out of 30 from the first cohort and 7 from the second cohort) because of disease and chronic malnutrition. only three informants living near the fisheries, an irrigation scheme and the main road were noted to have less food shortages compared with the rest of the informants. the researcher witnessed government’s politicisation of food aid distribution as well as the barring of food aid by ngos in the district resulting in chronic food shortages leading the informants to survive on ‘famine foods’ such as wild fruits, roots and leaves. government’s withdrawal of nutritious porridge for the under-five infants was noted mainly during election times. delivery of the porridge from the district hospital to central points would be stopped and mothers of sick children were stopped taking porridge home after discharge from health centres. several visits to the district hospital showed distressed women (two informants included) stating that the children had improved during the hospital stay but were going to die at home because of lack of food. ‘baby food’ such as mash and easy to swallow foods were lacking, leading to frail children with or without disabilities not being able to eat properly and succumbing to malnutrition, weight loss, stunting, developmental delays and death. wasting, delayed milestones and stunting were noted in 37 of the children. most of the informants’ sentiments were to see an improvement in their children’s health, stating: ‘i need food to improve the child’s health status so that he is able to sit and walk like other children.’ (16-year-old, married woman, with two children) child mortality was witnessed with affected informants stating: ‘in the end, my child died from hunger. there was no proper food to feed her.’ (20-year-old woman, with four other children) a chronic food shortage among the informants was noted to perpetuate the spread of hiv/aids. the informants, especially women, reported of having undergone several hiv tests anticipating a positive result in order to access food aid from the few ngos that carried out voluntary counselling and testing (vct) programmes in the district. water and sanitation: ‘go, the water will follow’ the above was a statement by district administrators during the evictions when the ‘river’ tonga asked how they were going to survive on the dry mainland, maintaining that they were still waiting for their water to follow them, stating: ‘if there had been no dam, we would not be suffering like this. … our land was taken away so that the people of the city can have electricity. … now the government is planning to send water to the people of the city 450 kilometres away. … we want our water to follow us.’ (old man, in his 70s, living with a family of four wives and grandchildren) informants stated how dehumanising this was to them as a people. drinking water was sourced from open ponds, wells and dried-up river beds (competing with animals), with only a few having access to boreholes. women had to walk up to 20 kilometres to fetch water twice a day in the scorching heat. this was a huge constraint and anguish to informants who had to carry the disabled child on their backs during such strenuous household chores resulting in reports of backache and chest pains. they reported of not being able to leave the child at home because of the child’s problems such as athetoid palsy (flaccidity) or repetitive behaviours (head banging or crying) that would make it difficult for siblings or co-wives to cope with. lack of piped water, boreholes, asbestos or tin roofs resulted in the consumption of contaminated water especially during the rainy season for lack of sanitation. only one family had sanitation in the form of a dug-out pit while the rest practised open defecation. cholera outbreaks, infections and diarrhoea mainly affected the under five-year-olds, the sick and the elderly. bathing was a luxury especially during the dry season when water was scarce. it was common to hear female informants stating: ‘we haven’t had soap for a very long time and have forgotten what it looks like (laughs). … these days we only get enough water for cooking and drinking and not for laundry or bathing.’ (woman, in her 20s, married with three children) hygienic processes such as washing of children’s soiled clothes were compromised, leading to more infant infections and anguish to the informants who could not access healthcare for their children. some villages were void of fresh water, relying on salty unpalatable water instead. the consumption of salty water was noted with adverse effects of yellow corroded teeth among the children. vegetable gardens were not possible since the water was not conducive to plant life. health services out of the 53 children, 8 were born at a health centre, 14 were immunised, 10 attended health centres at least once for treatment, 4 received rehabilitation services, and all 53 needed therapy and assistive devices which were out of reach for most of them. lack of access to health services because of financial constraints, lack of health centres, medical personnel, medicines, long distances and lack of public transport were constraints that affected the whole district. informants reported emotional and practical suffering in dealing with multiple healthcare-seeking procedures with the disabled child compared with when they had non-disabled children, resulting in a lot of anguish and disruption in the family. apart from birth, disabilities were also acquired later in childhood through malnutrition, disease, hiv/aids, lack of vaccines and accidents. the following narration shows the anguish caused by poverty, lack of and access to social services and development to the district: ‘my child was not like other children his age between 5–6 months of age. he had no head control and could not sit up. my fears were confirmed when at 10 months he could not sit up. the first port of call was the traditional healer’s place but the family had no money and so we went to the prophet at the church of zion who stated that the child was disabled and would never walk. my brother who works in bulawayo then sent some money and we took the child to binga rehabilitation department where i was shown some exercises to do and not the cause of the disability. after this we visited the traditional healer who confirmed that the child was bewitched. the problems with the child are that he is always sick and needs medication that we cannot afford and that he cries all the time and so stays on my back all the time. my biggest problem is the fact that he cannot sit or crawl like other children. i am now worried about the coming rainy season whereby i should be working in the fields with the rest of the family. meanwhile i cannot carry out “piece jobs” for other families such as cutting thatching grass or take part in community activities.’ (young mother, in her 20s, married with two other children) having a disabled child necessitated visits to the traditional healer to find out ‘why’ it happened and later for treatments. the tonga believed causes of disability to be ancestors’ sorrow or witchcraft. if not, the ‘will of god or it just happened’ resulting in not putting blame on the family or the child. the child was referred to as mwana murema meaning a disabled child and taken care of as well as its siblings. tonga women referred to childbirth as: ‘a process that could go either way; right or wrong and depended on your luck.’ (an old lady, in her 60s, who had lost three children during childbirth) maternal and high infant mortality during labour created anguish for the families with many wishing they could access modern healthcare. excessive bleeding and complications during and after giving birth were reported as major causes with malaria, malnutrition, diarrhoea, infections and other diseases. poverty resulted in many of the informants selling mosquito nets received from government or ngos in order to buy food or medication for the sick disabled child when in actual fact the child needed malaria prevention. reports of seizures, lack of adl and emotional and behavioural problems were very common among the disabled children. ‘he has seizures most of the time and now he seems to have lost his sight and hearing – he does not smile or turn his heard towards sounds.’ (grandmother, in her 60s, taking care of a fouryear-old grandchild) ‘he cannot do anything for himself. i have to wash, dress, feed and carry him on my back or lay him down.’ (mother of a threeyear-old boy, with no muscle control) parents of a four-year-old boy and five-year-old girl with emotional and behavioural problems stated: ‘we have to tie his arm to a tree at the homestead so that he does not escape from home. he has a tendency to wonder in the forest and we fear he might drown or fall over a cliff. he is young so he is not able to untie himself – we untie him when his father and brothers are at home so as to run after him when he escapes.’ (married mother of a four-year-old boy, in her 40s) ‘our daughter uses foul language when we have visitors. … it is very embarrassing and stressful for the family.’ (married woman, in her 30s, with five other children) lack of clothes was noted, with informants wearing ‘handme-downs’ from family members in nearby towns or well-wishers. suspected hiv-positive disabled children suffered a double blow of infections and problems relating to disability such as cognitive and motor delays. hiv-positive informants and their disabled children were noted to be struggling to survive without anti-retroviral treatment with children who could have been hiv negative if prevention of mother-to-child transmission (pmtct) services were available. vct services have yet to reach the majority of the informants while most parts of the country are receiving the services. it was also noted that for those receiving the services, the information, education and communication (iec) materials were not in the local language, disadvantaging the communities. lack of appropriate services for disabled children such as community-based rehabilitation (cbr) was a barrier to independence, limiting adl skills resulting in total dependency on caregivers. this was a major issue especially among adolescents who needed privacy with activities such as bathing or toileting. ethical consideration ethical approval was obtained from the medical research council of zimbabwe (mrcz – ref. mrcz/b/286) and the regional medical ethics committee (rek – case 2015/397) in norway. the aim of the study was explained to the informants who gave their consent by signing a consent form or putting an ‘x’ figure as signature. the families were identified by numbers to maintain anonymity and confidentiality. the researcher and first author of this article is zimbabwean with a fairly good command of chitonga. the informants were open minded, hospitable, eager to participate and willing to tell their stories. furthermore, the research assistant was a tonga rehabilitation technician with over 30 years’ experience working in the district. she helped with explanations of tonga culture, and facilitated negotiations for entry to the district through community chiefs and headmen, the district administrator and access to the informants. discussion according to the world commission on dams (2000), the resettlement programme was removed from the main kariba project, a deliberate act to disadvantage the tonga. they were not allowed to participate in decisions involving the planning of their resettlement and efforts were not made to minimise the negative impact of the displacement. the potential use of the kariba water for irrigation was not investigated as part of the project. displacement resulted in loss of cultural identity when materials of cultural values and shrines were left behind, loss of livelihoods as well as unprotected settlements that exposed them to wild animal attacks. healthcare and education were virtually absent, communication and transport were non-existent, and travel was mainly by foot along footpaths which exposed them to wild animal attacks. lack of equitable distribution of benefits from the project such as improved living standards, water, electricity, social services and employment showed how kariba has failed the test of development effectiveness. binga appears to have missed out on the massive development programmes implemented in the early years of independence by the government and ngos. the country’s independence (1980) did not usher in much improvement to the district as in the rest of the country. political violence in the form of food aid withdrawal and lack of development has resulted in a life of abject misery and extreme human suffering. the forced relocation had a dramatic effect on their lives, the consequences of which are still felt today (conyers 2002; cumanzala 2002). their quality of life has not changed for the better preor post-independent zimbabwe, stating that the ‘past is the present’. structural violence was the root cause of their problems which were not found in personal responsibility but in displacement of communities by a dam planned by powerful actors, which has to date created a situation of extreme human suffering. cerebral palsy was seen to create a lot of suffering for the informants and their disabled children. insomnia, anxiety, stress, tiredness and depression were reported and noted to affect some of their daily activities. reports of anguish, stress and anger of seeing their disabled child with no education, a future without a job meant perpetual poverty for both the child and family. broadly, the challenges included psychological ones owing to caregiver demands and uncertainties and physical health challenges that emanated from excessive stress and through constantly assisting their children in adls as also noted by sajedi et al. (2010). lack of financial help and isolation led to reports of depression, which affected crucial activities such as fieldwork that would lead to less yields. lack of mobility led to food poverty because of loss of manpower where the child would have contributed as part of the household by working in the fields as well as fetching wild fruits for family consumption during the famine months. traditional healer treatments in the hope of improving the child’s disability resulted in economic challenges with some reporting being in debt. cerebral palsy, with its numerous comorbidities, was seen to maintain the disability poverty vicious cycle because of the problems that it created affecting the whole family. the study results show structural violence in the form of exclusion and discrimination as the current evidence base for the link between disability, poverty and health. cerebral palsy was noted to result in structural power relations and the production of inequalities. structural violence took away the informants’ capability to pursue and achieve well-being of their families and their disabled children. the government’s deliberate oversight of development in the district has led to lack of opportunities for the tonga. they were noted to lack political liberties and social powers that other districts in the country enjoyed. their suffering was caused by lack of water and electricity from the zambezi river, government food aid withdrawal, high unemployment, lack of social services, poor road infrastructure and a nomadic life style – factors that the government through goodwill could have eliminated decades ago and enabled them to achieve well-being (colson 1971; currey 2009; tremmel & the river tonga people 1994). structural violence was seen to create social suffering among the disabled children as well as the carers who had to cope in an environment that lacked social services and social support. characteristics of cerebral palsy such as abnormal brain development caused by bacterial or viral infections prior to birth, labour, delivery complications and disease complications such as meningitis and maternal hypertension could be minimised, as well as cerebral management with drug treatment, orthopaedic surgery, orthotics and different therapies with accessible and affordable healthcare, minimising the disability incidence. mobility, a major activity among these communities for survival, was denied the disabled child creating major challenges to family care. a vicious cycle of poverty because of structural violence was amplifying the negative consequences of disability. the late 1980s ushered in tonga mediating institutions such as the binga development association (bda), the binga catholic commission for peace and justice (bccpj) and basilwizi trust which sought to empower the marginalised people of the zambezi valley by advocating for stronger government commitments to the development of the district’s infrastructure such as schools, hospitals and irrigation schemes. unfortunately for the tonga, government structures infiltrated the bda and bccpj structures and destroyed them in the late 1990s leaving basilwizi trust to continue the fight. the continued occupancy of the binga tonga of an environment with little support for food production as well as lack of government support shows their resilience against ecological threats and social structures. the capabilities approach in this case has been used as a lens for understanding disability as a development concern (graham et al. 2012). the capability approach (sen 2009:258) argues that disabled people face not only impairment of income-earning ability (earning handicap) but also the challenge of converting income or resources to achieve a valued life (conversion handicap). structural violence was noted to have destroyed the informants’ income-earning ability by lack of development to the district resulting in chronic poverty that affected their disabled children’s future. both the earning and the conversion handicaps were missing among the informants violating the social model of disability and its human rights approach for the disabled child. their situation was a lack of resources to harness opportunities. participation contributes to the quality of people’s lives, and the ability to do something for other members of the society is an elementary and valued freedom (dreze & sen 1995). lack of participation for the disabled child and parents in different programmes such as education, peers, family and community at large was noted to result in lack of quality of life, helplessness and a bleak future. the children’s situation as they grew into adulthood was noted with the notion of ‘disability is inability’, a notion that the disability world is moving away from. munsaka and charnley’s (2013) study among adult tonga of binga with disabilities posted the same sentiments such as lack of participation, accepting a less than equal situation in which they live and living in a state of disempowerment. resilience is what keeps them going. capabilities rely on both the assets available to the individual (human, social, educational and financial) and the social and political landscape that acts to enhance or constrain capabilities (mitra 2006). using the capabilities lens, structural violence served to eliminate the capabilities of families with disabled children, and ultimately the children themselves. the article has therefore brought out evidence-based challenges associated with disability in the context of wider development challenges. conclusion politics resulted in uprooted and illiterate communities, diseases, disability, loss of dignity and death. this prevented the tonga from meeting their basic needs, with structural violence appearing under names such as discrimination, exploitation and injustice. the tonga situation needs government’s political will to eradicate social suffering through development programmes that will create employment, adequate social services, infrastructure, safeguard human rights and compensation for the forced displacement. the cerebral palsy incidence and disability can be minimised bringing relief to the informants and their disabled children. this will be in line with the two un conventions (crc, un 1989; crpd, un 2006) and the ‘african charter on the rights and welfare of the child’ (1990 – and entered into force in 1999) which urge member states including zimbabwe to prioritise disability as social development policies and programmes by addressing structural violence. acknowledgements the authors are grateful to the letten foundation (organisation no. 977-131-391) oslo, norway, for the funding of this study. they also express their appreciation to the caregivers and their children for participating in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this 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1412–1427. https://doi.org/10.1080/09687599.2014.934441 who, 2001, the international classification of functioning, disability and health, world health organization, geneva. world commission on dams, kariba dam zambia and zimbabwe, 2000, soils incorporated (pvt ltd) harare, zimbabwe and chalo environmental and sustainable development consultants lusaka, viewed 07 february 2017, from http://www.webdams.org zimbabwe national statistics agency (zimstat) and icf international, 2012, zimbabwe demographic and health survey (2010–2011 zdhs), zimstat and icf international inc., calverton, md. zinkin, p. & mcconachie, h., 1995, disabled children and developing countries, mackeith press, london. abstract introduction ethical considerations patient presentation management and outcome discussion conclusion acknowledgements references about the author(s) candace vermaak department of exercise, sport and lifestyle medicine, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lovemore kunorozva brigham and women’s hospital, division of sleep and circadian disorders, faculty of medicine, harvard university, boston, united states of america broad institute, molecular and population genetics program, faculty of medicine, massachusetts institute of technology, cambridge, united states of america center for genomic medicine, faculty of medicine, harvard university, boston, united states of america citation vermaak, c. & kunorozva, l., 2025, ‘enduring benefits of exercise after spinal cord injury: insights from a case study’, african journal of disability 14(0), a1633. https://doi.org/10.4102/ajod.v14i0.1633 case study enduring benefits of exercise after spinal cord injury: insights from a case study candace vermaak, lovemore kunorozva received: 05 dec. 2024; accepted: 17 apr. 2025; published: 25 june 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract introduction: spinal cord injuries (scis), while relatively rare, profoundly alter the lives of those affected. among the diverse causes of sci, traumatic sporting injuries represent 8.7% of newly reported cases. despite the life-altering consequences of sci, physical activity (pa) can mitigate some of these impacts. patient presentation: this case study highlights the long-term benefits of sustained pa and its crucial role in fostering a cascade of positive outcomes post-sci. we present the case of an elite south african athlete, ‘jim’, who sustained a complete sci at the c6 level at the age of 16 in 2012 following a fall during dismount in a gymnastics competition. jim’s rehabilitation journey began shortly after the injury, encompassing formal inpatient care, alternative therapies and ultimately a return to competitive sports. by 2015, jim resumed athletic activities, beginning with shot put and discus before transitioning to wheelchair racing, which became a pivotal aspect of his recovery. management and outcome: the case emphasises how sustained pa led to jim’s significant physical and mental improvements, such as weight loss, enhanced self-esteem, increased mobility and greater independence in daily living. moreover, sport provided jim with a renewed sense of purpose and direction. conclusion: this case underscores the importance of creating ongoing opportunities for individuals with sci to continue their recovery long after discharge from inpatient rehabilitation. contribution: this case study illustrates how sustained pa contributed to a cascade of positive outcomes in jim’s recovery following sci, offering valuable insights from his lived experience. keywords: spinal cord injury; physical activity; sport: rehabilitation; exercise. introduction spinal cord injuries (scis), though infrequent, account for a significant burden on those affected. globally, motor vehicle accidents are the leading cause of scis, accounting for approximately 38% of cases (bennett, das & emmady 2024), while sports-related injuries contribute to an estimated 8.7% – 9% of new cases (bennett et al. 2024; boden & jarvis 2008). in contrast, within developing countries such as south africa, assault is the most common cause responsible for up to 60% of scis, followed by transport-related injuries (26%) and falls (12%) (joseph et al. 2017). the severity of sci largely depends on the injury’s location and completeness (vincent et al. 2014), with cervical injuries being among the most severe because of their potential to impair motor and sensory function in both the upper and lower limbs, the trunk and respiratory system (szeliga et al. 2022). a sci often results in permanent damage, interrupting communication between the brain and body, leading to a wide range of symptoms from loss of sensation and muscular control to impaired autonomic function (chiou et al. 2022). these impairments significantly reduce independence, health and quality of life (qol) and increase the risk of secondary health conditions (shcs), contributing to early mortality (conti et al. 2020). despite the profound impact of sci, physical activity (pa) offers an avenue to mitigate these effects (vermaak et al. 2022). physical activity has been shown to enhance emotional well-being, improve functional status, including coordination, muscle strength and endurance, and facilitate the completion of activities of daily living (szeliga et al. 2022). furthermore, pa helps prevent chronic health conditions (chcs) such as heart disease, stroke and type 2 diabetes, which are often exacerbated by a sedentary lifestyle (soriano et al. 2022). while much research has focused on the short-term benefits of sport and pa (baehr et al. 2022, rauch et al. 2013, williams et al. 2014), this case study illustrates the enduring advantages of long-term pa and its essential role in ensuring ongoing recovery post-sci. study design this case study employed a qualitative, descriptive methodology to explore the long-term benefits of sustained pa in the rehabilitation and recovery of an individual with a sci. the case study design was chosen to provide an in-depth understanding of the pa experiences and outcomes of a single participant, offering rich, contextual insights that quantitative methods cannot capture (yin 2018). participant selection the participant, referred to as ‘jim’ for confidentiality, was purposively selected because of his unique experience as an elite athlete who sustained a complete sci following a fall during a gymnastics dismount. the case was selected as jim demonstrated sustained engagement in pa throughout his rehabilitation journey. jim was an existing acquaintance of the lead researcher, identified through shared involvement in local adaptive sports networks, which facilitated initial contact and recruitment. this selection aligns with the intrinsic case study approach (creswell & poth 2018), where the subject is chosen for the unique and illustrative value of their story, particularly jim’s remarkable resilience and sustained engagement in rehabilitation and sport. his experience provides insight into long-term sci recovery within a low-resource context, making it a valuable lens for exploring rehabilitation beyond formal care environments. data collection data were collected through a single in-depth, semi-structured interview with jim. the interview was conducted via video call on zoom, and audio-recorded with jim’s consent. the interview focused on detailed narratives about his lived experiences, challenges and progress throughout his rehabilitation journey. open-ended questions were used to explore his perspectives on pa, mental health, chronic conditions, shcs and qol post-sci. data analysis inductive thematic analysis was used to analyse the qualitative data (braun & clarke 2006). the analysis followed these steps: familiarisation: interview recordings, notes and transcripts were reviewed multiple times to gain an overall understanding of the data. coding: relevant segments of the data were systematically coded to identify patterns and recurring themes related to pa and recovery outcomes. theme development: codes were grouped into broader themes, such as ‘physical health improvements’, ‘psychosocial benefits of sport’ and ‘barriers to sustained activity’. narrative synthesis: a detailed case narrative was constructed to illustrate the key findings and their implications for rehabilitation. ethical considerations ethical approval was obtained from the stellenbosch university human research ethics committee review board (hrec number: hea-2023-27120). written informed consent was obtained from jim, and measures were taken to ensure confidentiality through the use of a pseudonym. trustworthiness and rigour the credibility of the findings was enhanced through triangulation, comparing interview data with field notes to validate key themes, as well as through study member checking, where jim reviewed and confirmed the accuracy of the interpreted findings. in addition, peer debriefing with colleagues provided external insights into the analysis and helped minimise potential researcher bias, which may be linked to the lead researcher’s prior clinical experience in rehabilitation settings and personal interest in pa post-sci (lincoln & guba 1985; shenton 2004). peer debriefing involved colleagues with expertise in qualitative research and rehabilitation science independent of the study who reviewed selected data and themes, offering critical feedback to improve clarity, reduce potential bias and ensure the findings accurately reflected the participant’s lived experience. transferability transferability was supported by providing a thick description of jim’s background, injury and rehabilitation context. while this is a single case, such rich contextualisation enables readers to assess the relevance of the findings to other similar contexts (lincoln & guba 1985). dependability dependability was addressed by maintaining an audit trail of all decisions made during the research process, including coding frameworks, inductive thematic development and analytic memos. this allows others to follow the progression of analysis and ensures the process is traceable and consistent (nowell et al. 2017). confirmability confirmability was strengthened by documenting reflexive notes and engaging in regular reflection to acknowledge and manage personal biases. peer debriefing also contributed to ensuring that the findings were shaped by the participant’s data rather than researcher assumptions (lincoln & guba 1985). relevance to rehabilitation the methodology outlines the procedures undertaken to explore the role of sustained pa in sci recovery. by combining personal narratives such as the neurological level of injury, shcs and mobility status with clinical data, this case study offers valuable insights into how ongoing pa influences physical, psychological and social outcomes post-sci. these findings have implications for designing personalised rehabilitation programmes that extend beyond inpatient care to support long-term recovery and qol. patient presentation jim, an elite south african gymnast, sustained a complete sci c6 at the age of 16 during a junior olympic training competition in 2012. the injury occurred when he lost focus on the parallel bars, resulting in a headfirst fall that left him conscious but in immense pain. despite his desire to complete his routine, jim instinctively remained still, aware of the severity of his injury. before the injury, jim had been experiencing burnout and was coping with the recent loss of his godfather, factors that may have contributed to his lack of preparation for the competition. with an 8-year career in gymnastics, including provincial and national-level competition, jim’s life was deeply intertwined with his sport. management and outcome jim’s rehabilitation journey: interventions, challenges and progress immediately post jim’s injury, he spent a week in intensive care before beginning his rehabilitation journey. during this initial phase, he struggled to come to terms with his condition, isolating himself from others with disabilities and resisting acceptance of his new reality. he feared that acknowledging his injury meant surrendering to it, holding onto the hope that he might walk again. medical professionals repeatedly advised him to accept his circumstances, but this proved to be a significant emotional challenge. beyond the psychological burden, jim found the loss of independence particularly difficult. simple tasks, such as relying on others for feeding, adhering to a strict bathroom routine and the fear of falling because of loss of balance, made him feel as though his autonomy and dignity had been unfairly taken from him. however, his optimism and background in gymnastics provided a foundation for resilience. his physical fitness prior to the injury contributed to his ability to persevere through these early challenges. jim was initially treated at a leading rehabilitation centre in cape town, where his medical aid allowed him access to high-quality care. his rehabilitation team prioritised early intervention to capitalise on his residual muscle strength. although initially placed in an electric wheelchair, jim’s determination led him to transition to a manual wheelchair within 6 weeks, driven by his desire to regain independence despite facing his mental challenges and having to accept that he might not walk again. his optimism, coupled with his background in gymnastics, helped him persevere during this challenging time, as he remained physically fit and strong despite the sci. pushing his wheelchair was tough, but he knew that if he did, he would only get stronger. he tried to do everything independently, and the more he failed at the task (e.g. he would drop cutlery when eating), the more determined he was to try again. jim would rather make his life a little bit more difficult to get stronger than take the easy way out. it is just his nature. he spent a total of 10 weeks at the rehabilitation centre in cape town. during this time, jim regained some function in his triceps and wrist flexion. after 10 weeks of rehabilitation, jim’s medical and support team concluded that further improvement in his recovery would be limited. at this critical juncture, an opportunity arose for jim to continue his rehabilitation at the shepherd rehabilitation centre in birmingham, alabama, us. this opportunity marked a significant turning point in jim’s recovery, as the centre offered a fresh perspective on rehabilitation modalities and introduced him to new therapies and strategies. during his time at the shepherd rehabilitation centre, jim experienced the most substantial progress in his recovery since his sci, including marked improvements in upper limb function, trunk control and independence in daily activities. although jim experienced great gains upon returning to his residence, he found the transition challenging, as it brought forth numerous questions about his future and career. additionally, he noticed significant weight gain, which he attributed to the routine dosage of colostrum supplements intended to aid in cellular regeneration. in addition to his rehabilitation, between 2012 and 2014, jim committed to several intensive therapies, dedicating 2–3 h a day, monday to friday, and occasionally on saturday mornings. his regimen involved working with a diverse team, including his former gymnastics coach, a personal trainer, a bodybuilder, occupational therapists, physiotherapists and practitioners of alternative therapies. jim pursued several alternative therapies in his recovery journey. he reported that acupuncture improved his hand function from being unable to grasp objects to regaining partial grip strength and tactile sensation. he also explored homoeopathy, colostrum supplementation (which unfortunately led to unwanted weight gain) and stem cell therapy in his effort to enhance function and overall well-being. jim embraced every available opportunity to enhance his recovery and move closer to regaining some independence. in 2015, jim initially participated in adapted para-athletic activities, specifically shot put and discus before later discovering and transitioning to wheelchair racing. this shift to cardiovascular-focused sports was transformative, leading to dramatic improvements in his physical health, including weight loss, enhanced metabolism, better temperature regulation and improved bowel and bladder function. these physical changes, in turn, bolstered jim’s mental well-being, self-esteem and independence, enabling him to navigate life with greater ease and confidence. as jim lost weight, his wheelchair size decreased, allowing him to fit into smaller spaces and move around more easily. the lighter wheelchair also made it easier for him to load it into his car independently. weight loss further benefitted him by reducing the strain on his shoulder joints during pressure relief exercises. because of the level of his sci, jim was susceptible to both chcs and shcs, which, if not properly managed, could have significantly impacted his qol. however, regular pa played a crucial role in enhancing his qol, improving both his physical capabilities and confidence. with an improved metabolism, jim could enjoy a diverse range of foods to support his training and recovery without the fear of gaining weight. sport provided jim with a sense of purpose and a goal to strive for, shifting his focus away from what he could not do, like wiggling his toes, to what he could achieve. he became dedicated to improving his performance, working on becoming faster and stronger while also recognising the importance of recovery, proper seating and the right exercises to stay injury-free. remarkably, since incorporating pa into his daily routine, jim did not experience any sci-related illnesses throughout his post-injury athletic career. discussion this case study chronicles the rehabilitation and recovery journey of an athlete who sustained a complete sci during a competitive sporting event. while sport was the initial cause of his injury, it also played a pivotal role in his long-term recovery. although sport can serve as a catalyst for recovery, previous research indicates that younger age at the time of injury is associated with improved muscle strength and functional outcomes, likely because of greater physiological plasticity and motivation to engage in rehabilitation efforts (thomas & grumbles 2014). in jim’s case, he sustained the sci at the age of 16, when he was in peak physical condition. his medical team leveraged his fitness level to enhance his recovery process. the case highlights how early intervention, coupled with sustained pa, can lead to significant improvements in both physical and mental health outcomes post-sci. the case also emphasises the need for ongoing opportunities for individuals with sci to continue their recovery outside of formal rehabilitation settings while also recognising the critical role that personal resilience, determination and intrinsic motivation exemplified by jim play in sustaining pa and achieving meaningful recovery. although early intervention was implemented in this case study, treating a complete sci remains a significant challenge, often leading to limited recovery, particularly after inpatient discharge (piazza & schuster 2017). it also underscores the significance of patient determination and dedication in achieving better health outcomes. jim’s journey highlights the importance of continued rehabilitation beyond the inpatient phase. as jim transitioned from power-based sports to wheelchair racing, he not only experienced physical improvements but also a renewed sense of purpose and direction. his story illustrates how determination, resilience and sustained pa can drive recovery, even in the face of a complete sci. this is consistent with findings that highlight the critical role of patient motivation in enhancing functional capacity during rehabilitation (krysa et al. 2022). additionally, evidence suggests that individuals who demonstrate high resilience at the onset of rehabilitation tend to achieve better recovery outcomes (monden et al. 2014). secondary health conditions, such as respiratory infections, bladder infections and cardiovascular complications, are commonly reported in individuals with sci, particularly those with cervical injuries (sezer, akkuş & uğurlu 2015). in this case study, jim noted that following his sci but prior to 2015 when he began rehabilitation at the shepherd rehabilitation center, he experienced one intestinal bacterial infection and bronchitis three times. he attributes the subsequent improvement in his immune function to weight loss, improved nutrition and diet, and his current level of sport and pa. endurance sports have been shown to positively impact the management of chcs such as obesity, diabetes, coronary heart disease and early mortality (dhule et al. 2022; ginis, jörgensen & stapleton 2012). sports participation provided jim with a sense of belonging, social interaction and emotional support, all of which were crucial to his recovery. competitive sports for individuals with disabilities have expanded significantly over the past few decades, offering opportunities from developmental levels to elite competition, and have the power to transform lives (blaauwet & willick 2012; ramsden et al. 2023). in this case study, jim experienced these transformative benefits, with weight loss being one of the most impactful. this weight loss led to a series of positive outcomes, including a reduction in his wheelchair size by two sizes, which greatly improved his confidence and qol. this aligns with research showing that cardiovascular exercise, such as hand cycling (chiou et al. 2022) and arm-crank exercise (farkas et al. 2021; nightingale et al. 2018), can increase lean body mass (vivodtzev & taylor 2021). additionally, improved metabolic regulation from cardiovascular exercise (nightingale et al. 2017) allowed jim to maintain a diverse diet to support his training and recovery without gaining weight. finally, while this case highlights the potential benefits of sustained pa in sci rehabilitation, it also underscores the socio-economic disparities in access to such opportunities. jim’s access to private healthcare, overseas interventions and a multidisciplinary support team may not be representative of the broader sci population in south africa, particularly those reliant on under-resourced public health services. this disparity raises important considerations for equity in rehabilitation programming and the need for scalable, community-based interventions that can be adapted to lower resource settings. it underscores the importance of early and sustained pa, community-based support and creative use of locally available resources to promote functional recovery and long-term engagement in pa even in the absence of international facilities or elite sports programmes. jim’s experience demonstrates that exercise, proper nutrition and shc management can significantly enhance recovery outcomes, even in challenging circumstances. for example, sport provided jim with a sense of purpose and a clear goal to work towards. he focused on improving his athletic performance, which included maintaining proper nutrition and recovery practices, crucial elements in preventing injuries that could lead to bed rest and rehospitalisation, potentially undoing the functional gains he had achieved. this underscores the importance of education on self-monitoring and injury prevention, especially as individuals with sci transition from inpatient rehabilitation to managing their condition in their home environment. the education received during rehabilitation plays a vital role in shaping the health outcomes of individuals with sci (conti et al. 2020). however, after discharge, patients often face a critical period of adjustment, navigating the challenges of living with their disability without the constant support of a rehabilitation facility. many are discharged before fully mastering the self-management skills necessary for independent living (conti et al. 2020). while jim demonstrated notable psychological resilience potentially influenced by his elite sporting background, he did not report engaging with formal mental health services during his recovery. this highlights a key consideration: not all individuals will possess the same internal coping resources, and structured mental health support may be critical for others navigating similar life-altering injuries. therefore, in addition to community-based pa programmes, adaptive sports and peer support groups, accessible and ongoing mental health services should be considered essential components of long-term rehabilitation strategies. improvement. conclusion twelve years post-injury, jim continues to experience incremental improvements, highlighting the ongoing potential for recovery following a complete sci. while treating a complete sci remains a significant challenge, this case study demonstrates the critical role of sustained pa, coupled with a positive mindset, in promoting recovery and improving qol. the findings underscore the need for increased access to rehabilitation opportunities and education on the benefits of pa for individuals with sci, particularly in underserved communities. therefore, utilising accessible and affordable approaches such as exercise, along with education on proper nutrition and shc management, may significantly enhance recovery for many patients following sci. acknowledgements the authors would like to acknowledge the para athlete, without his willingness to participate, this study would not have been possible. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions c.v. and l.k. contributed equally to this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data associated with this dataset are found on the university redcap database. the data will be made available to researchers within a reasonable time frame upon request from the corresponding author, c.v. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s 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6th edn., sage, thousand oaks, ca. abstract introduction research methods and design results discussion conclusion limitations acknowledgements references about the author(s) karina huus department of nursing, school of health and welfare, jönköping university, jönköping, sweden child research group, jönköping university, jönköping, sweden swedish institute for disability research (sidr), jönköping, sweden refilwe morwane centre for augmentative and alternative communication, university of pretoria, pretoria, south africa maria ramaahlo centre for augmentative and alternative communication, university of pretoria, pretoria, south africa sadna balton centre for augmentative and alternative communication, university of pretoria, pretoria, south africa department of speech therapy and audiology, chris hani baragwanath academic hospital, soweto, south africa emelie pettersson department of nursing, school of health and welfare, jönköping university, jönköping, sweden child research group, jönköping university, jönköping, sweden swedish institute for disability research (sidr), jönköping, sweden ingalill gimbler berglund department of nursing, school of health and welfare, jönköping university, jönköping, sweden child research group, jönköping university, jönköping, sweden swedish institute for disability research (sidr), jönköping, sweden shakila dada centre for augmentative and alternative communication, university of pretoria, pretoria, south africa citation huus, k., morwane, r., ramaahlo, m., balton, s., pettersson, e., gimbler berglund, i. et al., 2021, ‘voices of children with intellectual disabilities on participation in daily activities’, african journal of disability 10(0), a792. https://doi.org/10.4102/ajod.v10i0.792 original research voices of children with intellectual disabilities on participation in daily activities karina huus, refilwe morwane, maria ramaahlo, sadna balton, emelie pettersson, ingalill gimbler berglund, shakila dada received: 28 aug. 2020; accepted: 06 may 2021; published: 05 july 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: participation in daily activities is expressed as a human right. full participation of children with disabilities in daily activities creates optimal opportunities for learning and development. previous studies have focused primarily on proxy ratings of participation of children with intellectual disabilities in daily activities. however, little is known about how the children rate barriers and facilitators to their participation in everyday activities. objectives: to identify barriers to and facilitators for everyday activities as experienced by children with intellectual disabilities from lowand middle-income countries and high-income countries. the research questions were as follows: ‘what barriers to participation do children with disabilities experience in everyday activities?’ and ‘what facilitators to participation do children with disabilities experience in everyday activities?’ method: a qualitative content analyses was used in this study, and individual interviews were conducted with 49 children with intellectual disabilities. the interviews were performed using pictures. the children also selected the most important activities and described in their own words the facilitators and barriers relevant to being able to perform the activities. results: the most important activities were organised leisure activities, formal learning at school, taking care of other family members and family mealtimes. self-reported barriers identified were personal functioning, social exclusion and lack of resources. the identified facilitators included satisfaction, personal capability, being included and having access to resources. conclusion: these findings provide important knowledge about the factors to consider in the development of interventions, aimed at improving the participation of children with intellectual disabilities. keywords: intellectual disabilities; participation; picture my participation; self-ratings; children; barriers; facilitators; daily life. introduction participation within the environment has been identified as an important health outcome for both children with disabilities and their families (arvidsson et al. 2014; coster & khetani 2008; imms et al. 2017) however, research studies have indicated that children with disabilities are restricted in their participation in daily activities, such as sports, educational opportunities, and recreational and informal leisure activities (conchar et al. 2016; higashida 2017; moyi 2017). in a recent review that focused on children with disabilities from lowand middle-income countries (lmics), it was found that children with disabilities participate less in everyday activities and have fewer engagements than their non-disabled peers (schlebusch et al. 2020). more specifically, children with intellectual disabilities experience restriction in their participation (hansen, siame & van der veen 2014) because of issues, such as stigma and discrimination (ferguson 2014). whilst there is an urgent need to develop interventions that promote participation, there is limited information available regarding facilitators that enable participation of children with intellectual disabilities. studies that focus on the barriers and facilitators to participation of children with disabilities tend to focus on participation in physical activities only (alesi & pepi 2017; maciver et al. 2019; shields & synnot 2016), and these are sometimes limited to high-income countries (mckenzie, mcconkey & adnams 2013). shields, synott and barr (2012) conducted a systematic review of the perceived barriers and facilitators to physical activity in children with disabilities, as perceived by children, parents and health professionals (organisational staff). of the 14 studies reviewed, only five studies included children with disabilities, whilst one study included both parents and children as participants, with the other studies being proxy ratings. a range of personal, social, environmental and policy or programme-related barriers and facilitators were identified. overall, the perceived barriers and facilitators identified by the different groups of participants were similar, but the emphasis placed on the different themes varied between groups. children with disabilities most commonly identified personal, social and environmental barriers to participation (shields et al. 2012), whilst parents focused predominantly on social, policy and programme barriers or on their own involvement in their child’s activity. an important finding of the shields et al.’s (2012) study was that the parents identified more facilitators than the children, as all studies in the review often neglected to ask children about facilitators to their physical activity. the health professionals, on the other hand, identified barriers and facilitators related to policies and programmes (shields et al. 2012). it is evident from shields et al. (2012) that there is a paucity of literature regarding the voices of children with disabilities and their perceptions of their participation in activities. moreover, research in the field of disabilities pertaining to facilitators and barriers to participation of children in daily activities is either specifically on the views of youths with disabilities aged 7–17 years (king et al. 2013) or on proxy ratings (i.e. caregiver responses on behalf of children with disabilities) (conchar et al. 2016; imms et al. 2016; moyi 2017; wright et al. 2019). in a study by huus et al. (2015), self-ratings of children with intellectual disabilities did not always overlap with primary caregiver proxy ratings on the realisation of children’s rights. interestingly, differences in selfand proxy ratings were found to be affected by the complexity of the children’s needs in maslow’s hierarchy, with caregivers more often giving the same answer as the children when the needs of the children were at the lower end of maslow’s hierarchy. when the questions related to more complex needs such as having someone to play with, the agreement between primary caregivers and the children was less likely to overlap. basic needs for survival are easier to fulfil and objectively see, but when it comes to more complex needs for participation in daily activities it is very difficult for primary caregivers to realise the needs of the child. therefore, the agreement between the proxy ratings of children and their primary caregivers depends on the complexity of the maslow hierarchy, and children’s own voices are even more important (huus et al. 2015). article 12 of the united nations convention on the rights of the child states that children have the right to express their views freely in matters affecting them (united nations general assembly 1989). studies that have explored barriers and facilitators to participation as experienced by children with disabilities seldom include the voices of children with disabilities (adair et al. 2015; åström, khetani & axelsson 2018). barriers are defined as factors that hinder the participation of children in everyday life situation. facilitators, however, include strategies that can facilitate their participation. children with intellectual disabilities experience social exclusion on a much greater scale than their non-disabled peers. mckenzie et al. (2013) argued that this experience is intensified within contexts of lmics. research on the perceptions of persons with intellectual disabilities and their families is predominantly conducted in and about high-income countries (mckenzie et al. 2013) participation has been explained by the world health organization’s (who) international classification of functioning, disability (icf) (who 2018) and the convention on the rights of the child (united nations general assembly 1989) as the involvement in life situations, that is for example being listened to and having the right to education and a family. in the icf that uses the who’s definition of disability, an individual’s health condition is intertwined and in constant interaction with the environment, in which they function. domains described in the icf encompass an individual’s impairment (i.e. body function and structure), activity limitation (i.e. difficulty experienced by persons in executing a task), as well as participation restrictions (i.e. challenges experienced by an individual’s involvement in life situations) (who 2018). this definition suggests not only that disability is attributed to the person’s health condition but also that other factors extrinsic to the individual, such as the environment in which they live, can play an important role. the icf, therefore, follows a biopsychosocial approach to disability. the who further defines participation as involvement in a life situation (who 2018). however, the definition of participation has not been consistent. imms et al. (2017) described the language and construct of participation as consisting of two dimensions, namely, attendance and engagement. attendance refers to ‘being there’, whilst engagement refers to involvement in an activity. the family of participation-related constructs also describes processes within the person that influence participation. these processes include preferences, sense of self and activity competencies. preferences are activities that the child finds as meaningful or that are interesting, and sense of self involves satisfaction with the activities, confidence in themselves and self-esteem. activity competence is related to the ability to perform in the activity in a manner that is expected; this includes both cognitive and physical abilities (imms et al. 2017). legislation frameworks, such as the convention on the rights of persons with disabilities and conventions on the rights of children, emphasise the importance of attendance, that is, being there, engagement in activities is not emphasised and is often overlooked (granlund 2013). the icf as a framework focusses on the objective aspect of participation (ueda & okawa 2003). however, few studies have considered subjective aspects of participation for children with disabilities, particularly children with intellectual disabilities (arvidsson et al. 2014; coster & khetani 2008). despite the importance of self-ratings, there are disadvantages that arise from asking children with intellectual disabilities to self-report. these disadvantages include the potential difficulty in comprehending and responding to questions and difficulty in recalling the past events related to participation in activities. it is important to note that the proxy does not have the same perspective as the child (jokovic, locker & guyatt 2004; nilsson et al. 2015). it is, therefore, plausible that caregivers’ knowledge of their children is limited, particularly with respect to relationships and activities that occur outside the home and with respect to internal feeling states. thus, researchers should consider instruments that allow children with disabilities to share their experiences and perspectives about the barriers and facilitators to their participation (huus et al. 2015; nilsson et al. 2015). the study aims to identify barriers and facilitators for everyday activities as experienced and reported by children with intellectual disabilities from south africa and sweden. this aim leads to the research questions: ‘what barriers to participation do children with disabilities experience in everyday activities?’ and ‘what facilitators to participation do children with disabilities experience in everyday activities?’ research methods and design a qualitative research design was used in this study. individual interviews were conducted with 49 children with intellectual disabilities, in which they rated their participation in activities of daily living using a self-reporting measurement instrument, namely, picture my participation (pmp). the psychometric properties are described in arvidsson et al. (2019). the interviews were performed as a conversation with an interview guide using pictures. the children also selected the most important activities and described in their own words the facilitators and barriers relevant to being able to perform the activities. inductive content analysis was used. the use of interviews enables the researcher to obtain first-hand perspectives, views, experiences and beliefs and/or motivations of individuals on a specific topic (creswell 2014). the use of the open-ended interview questions in the pmp in this study, allowed the researchers a ‘deeper’ understanding of the phenomena than would be obtained from purely quantitative methods, such as questionnaires with set answers. this study formed part of a larger collaborative project between south africa and sweden, with data collected from both the countries focussed on the participation of children with intellectual disabilities in everyday activities. south africa is an upper-middle-income country with various challenges regarding the access to healthcare and education for children with disabilities (moodley & ross 2015). sweden, however, is a high-income country that not only is well resourced but also faces challenges in improving the participation of children with disabilities in daily activities. the larger collaboration project aimed at exploring the usefulness of the pmp in different countries, such as lmics (south africa) and high-income country (sweden). arvidsson et al. (2019) found the instrument useful in both countries for children with intellectual disabilities. the focus of this study was on the broader understanding of the barriers and facilitators to participation in daily activities, as reported by children with intellectual disabilities broadly. therefore, comparisons between the countries were not the focus of the study, as previous studies have found similarities in contexts on the pmp measure. ethical considerations ethical approval to conduct this study was obtained from the ethics committee of a university of pretoria in south africa, as well as the relevant department of education, and from the research ethics committee of linköping university in sweden with reference numbers: gw20180301hs and dnr 2016/544-31. caregivers of the participants gave consent for their children to participate in the study, and assent was obtained from the children. participants were required to be competent to converse in english or swedish (determined by self-report with additional input from the teachers of the children). schools for children with intellectual disabilities in south africa and sweden were selected to be included in the study. participants a non-probability, purposive sampling method was used in this study. out of 49 children, 31 children with intellectual disabilities from south africa (sa) and 18 children from sweden (swe) formed part of the study. schools for children with special needs were contacted, and the teachers distributed information about the study to the parents and those parents who wanted to participate in the study sent their consent to the researchers. the schools were located in different parts of sweden and south africa. the ages of children ranged from 7 to 18 years. the children were all diagnosed with intellectual disability. caregivers described their child’s level of functioning by using the ten questions questionnaire (tqq) (mung’ala-odera et al. 2004). the children were, therefore, identified as having mild (42.60%: sa; 62.5%: swe), moderate (45.90%: sa; 31.30%: swe) and severe (11.50%: sa; 6.30%: swe) intellectual impairment by their caregivers. instruments the tqq was completed by caregivers prior to obtaining self-ratings regarding participation from the children. the questionnaire was used to screen for severe neurological impairment in children from low-resourced countries and had also been successfully used in high-income countries. the questionnaire comprised 10 questions related to motor, speech and language, cognition, as well as health condition (durkin et al. 1994). this instrument was used to decide on the child’s functioning. the main instrument used in this study was pmp, which is designed to capture the two participation dimensions of attendance and involvement of children and youth with mild intellectual disability who live in low-resource settings (arvidsson et al. 2019; dada et al. 2020). picture my participation measures participation in 20 home, social and community activities, and is performed as part of a structured interview with children. the open-ended questions where the children described barriers and facilitators for participation with their own words were transcribed and analysed by qualitative content analysis in this study. the items of pmp were selected by reviewing the existing participation measures and matching items to the uncrc. the content of the 20 items were found to be valid in the lmic context (south africa) and for children with intellectual disability (arvidsson et al. 2019). picture my participation is a manual-based structured interview instrument. it comprises three trial items where the ability of the child to understand the concepts’ frequency of attending and engagement with the help of graphic symbols and the scale anchors illustrated by graphic symbols is tested. after the trial items, four sections follow with the purpose of (1) determining perceived attendance in various activities using a four-point likert-type scale, (2) determining perceived involvement in various activities using a four-point likert-type scale, (3) prioritising activities considered to be the three most important to the child and (4) determining perceived barriers and facilitators to participation. the last two purposes are the focus of this current study. data collection data were collected by the authors and two other researchers in the research group who all are experienced in interviewing children and familiar with the pmp instrument conducted interviews with the children with intellectual disabilities. the researchers sent tqq forms via the school to the caregivers to complete and obtain consent for their children to participate in the study. after consent was obtained, assent from the children was obtained. the interviews were conducted with the children individually using the pmp instrument. in order to facilitate the communication with the children, a picture support approach, named the talking matstm (cameron & murphy 2002), was used. the pictures used in the interviews were graphical symbols from the picture communication symbols (pcstm) (fuller & lloyd 1997). each child’s individual interview lasted for approximately 20–30 min and was conducted on the school premises. the children were required to identify three items that were most important for them from the 20 items on the pmp. thereafter, the children were asked to identify barriers and facilitators to participating in those three specified activities. the children were asked, ‘is there anything that makes it difficult for you to participate in the activity’. if they said ‘yes’, they were asked, ‘what is it that makes it difficult for you to participate?’ likewise, the children were asked, ‘is there anything that makes it easier to participate in the activity?’ and ‘what is it that makes it easier for you to participate?’. the children responded verbally, and their answers were transcribed verbatim by the researchers. because of the children’s limited language development, the answers were short and comprised a few words or a sentence. data analysis an inductive qualitative content analysis was used to analyse the transcribed data on identified barriers and facilitators (jay et al. 1983). the researchers employed the technique referred to as ‘conventional qualitative content analysis’, in which categories are created directly and inductively from the collected data (hsieh & shannon 2005). this method of analysis consists of an inductive, reflexive analysis that focuses on the emergence of ideas, codes and thematic structures (soffer & chew 2015). member checking was only conducted during the interview to ensure that the interviewer had correctly understood the message the participant was intending to convey. furthermore, member checking of the coded transcripts, although desirable, was not done. inductive coding was performed. in order for the voice of the children to be heard, the analysis was performed close to the text. coding was conducted by two authors independently, and where there were discrepancies, recoding of the data was not carried out until consensus was reached. this peer review of coding enhanced the interpretive rigour of the analysis (elo & kyngäs 2008). in the results presented below, citations from the children are presented in quotes. results the children were asked to choose the three most important activities for participation from a total of 20. however, some of the children chose one or two activities as the most important to them rather than three as instructed. nonetheless, the majority of the children provided a choice of three most important activities. activities that the children reported most frequently as most important to them were organised leisure activities, formal learning at school, taking care of other family members and taking part in family mealtimes. the activities least mentioned as important to them include gathering daily necessities for the family, family or community celebrations, taking part in social activities in the community and getting together with other children in the community (table 1). table 1: the activities listed according to the number of children identifying them as most important and those activities least mentioned as important. perceived barriers and facilitators to participation in daily activities from the inductive content analysis, three categories for barriers and four categories for facilitators emerged, as shown in table 2. the data from both sweden and south africa were presented together, and no comparisons between the two countries were made because the results were comparable in both settings. there was also a disparity in the numbers of participants from the two countries. table 2: categories for barriers and facilitators. barriers: description of the categories the analysis of children’s perceptions of barriers to participation in daily activities resulted in three categories: personal functioning, social exclusion and lack of resources. personal functioning personal functioning was described by the children as factors within the person, such as their view of the self in relation to their physical or psychological functioning one of the barriers was the lack of knowledge regarding how to take care of their own health, ‘to see what is wrong with you’. barriers identified by the children were, therefore, about fear of healthcare procedures and healthcare professionals, as evident in the following quote: ‘i do not trust the dentist; i am scared of the dentist’. another barrier identified included the children’s view of their self, where they felt an inability to perform activities on their own, for example, in relation to meal preparation for the family, which is clear in the below quote: ‘when i do it myself it’s very hard’. quiet leisure activities, such as storybook reading, could also be considered as a barrier when the children did not have the ability to read the books they were provided with. the children described the school as boring and certain subjects were described as barriers because they were perceived as difficult for them, such as ‘afrikaans and math’. in addition, there was a barrier related to the policy enforcing activities in school for the children. the children said that they felt they were made to do things they did not want to do in the school, for example, ‘to have to go outside when it is wet’, and they were also overloaded with instructions and there were too many disturbances. the children did not like being out of their ‘comfort zone’. an example of this was when a child was not comfortable with being on stage during the church service. further challenges were also reported when caring for pets, and the children perceived that they had difficulty in preventing the pet from harming others. finally, other barriers reported were related to restricted participation in organised leisure activities, for example, ‘not being able to play due to injury’. this was mainly because of the children’s perceived lack of body function. social exclusion social exclusion was described as a barrier in relation to others, such as the children’s interaction with other people, being excluded from the social group and not being accepted on equal terms in these groups. the children felt ignored as they stated that ‘some people don’t listen’. the children also described a barrier when they talked about being outside of the social fellowship. they were excluded from being in the company of others when in a social activity or when they did not have friends to play with, as evident in the following quote: ‘there are not so many children outside and they do not answer when i call’. the children also described social exclusion as a barrier when in their own homes or with families. it could be difficult for the children to take care of other family members because they did not see the others, or they had difficulty making their voice heard. they also described social exclusion as a barrier at mealtimes when there was poor communication within the family, ‘mum, grandmother, brother don’t communicate much’) or when they were not allowed to be part of other activities in the family and were left by themselves. a barrier to participation in formal learning at school was social exclusion, which was described by the children as being bullied by peers and teachers at school in different ways. it could include being called names by their peers or not making friends, as shown in the quote ‘when friends call me names and backchat’. however, it could also come from the teachers, singling out the child with a disability, as the below quote mentions, ‘when we go to other teachers and they shout it makes my ears sore and they blame me for everything’. furthermore, they feared being physically harmed when engaging in contact-sports activities: ‘when they kick you when you have the ball’. lack of resources lack of resources refers to economic constraints to participation, such as lack of money. an example provided was related to not having money to run errands and shopping, ‘not having money to buy’. and not having resources to buy necessary items became a barrier within the school setting: ‘you wear your own clothes, not a uniform. you can’t when you cannot pay’. it could also refer to the difficulties with transportation or lack of resources with transportation, for example, going to church, ‘driving a long way’, ‘to walk there’. facilitators: description of the categories the analysis of children’s perceptions of facilitators for participation in daily activities resulted in four categories: satisfaction, personal capability, being included and having resources. satisfaction the children described how participation in activities was facilitated by pleasure, and, therefore, the satisfaction they gained from doing the activity, and they said that they enjoyed what they were doing. participating in cleaning the house and organised leisure activities enhanced the pleasure of the children, ‘have fun and enjoy myself’. the children described satisfaction as a facilitator in taking care of other family members, ‘easy because i help and love my family’ and to have satisfaction in religion without being shy about it and to trust in god, ‘pray to god and he will answer’. satisfaction was also described as having a common interest with someone else, ‘music be out and play’ and ‘we sing’. family mealtimes were a source of satisfaction, when the child enjoyed cooking. quiet leisure activities were also described as satisfactory activities, ‘to read in the morning and evening’ and ‘being alone’. personal care was facilitated when the children felt satisfaction with the chores in daily routines for personal care and looking after their own health, ‘feel like doing it’. a source of satisfaction that facilitated personal care was the sense of wanting to be of assistance, ‘likes to help mum’. personal capability a view of self as having capability was described in terms of social and physical skills, ‘good interaction skills’ and ‘you can play and score’. attending school was also perceived as a facilitator of learning, ‘makes me concentrate and calm’. perceived personal capability was a facilitator when taking care of other family members and family pets. in order to have the ability to look after someone else could be described as ‘just easy’ and ‘being able to look after family members’. personal capability could also be to have mental and not just physical capability in interaction with other people in social activities, ‘i trust them, i am trying to gather courage. it’s important to do that, you cannot just skip it’. to feel responsibility and personal capability towards family was a facilitator to participate in daily life, ‘i will never leave let them down’. included in personal capability was the children describing how they behaved at mealtimes and also how they studied so they got good grades at school as expressed in the participant quote, ‘when at home you must read so that you can pass and buy a house for your grandparents’. personal capability was shown in many ways. the children described school subjects they perceived as easy as facilitators for participating in school, creating structure and capability in their schoolwork, ‘doing work every day instead of letting it pile up’, ‘it is important with education, no hindrance, i encourage myself’. the children further talked about their positive view of themselves to have the capability to be responsible for their own health as a facilitator. caring for themselves in personal hygiene was also described as a facilitator, ‘clean my body and wash’, ‘to put medicine in the mouth’. a facilitator of looking after their own health was to know how to take medicine with the aid of the father, ‘yogurt or buttermilk helps and dad helps me’. being included the children talked of being included and having fun together with others as a facilitator to participation in social activities. being included was a facilitator and was described as taking part in conversations and being understood whilst taking care of other family members, ‘getting to sit with family and talk’. a facilitator of participation was also when the child was rewarded for taking care of his or her family members, ‘when keeping up chores and meal preparation, parents take him out to’ or someone prepared birthday parties for the child, ‘they make a birthday party for you’. the children also talked about being included and having fun together with others, ‘to talk with everybody’. a facilitator of being included at family mealtimes was to be able to participate in the conversations and thus participate in daily family life, ‘you can speak about how was school and mum and dad’s day at work, plans for the week and holidays’. to get help from parents was a facilitator for being included in family life activities, ‘parents help’. when there were relations free of conflicts, the children were included and that was perceived as a facilitator, ‘when i’m communicating with my friends and not fighting’. furthermore, a skilled educator who adapted the teaching to the needs of the child was perceived by the children as a facilitator, ‘less pressure and more allowance to complete tasks or homework’ and ‘[w]hen my teacher explains everything’. have resources to be able to have resources to be driven to church facilitated their participation in religious activities, ‘driven there (to church)’. discussion barriers reported by the children were related to personal functioning, social exclusion and lack of resources. the facilitators reported by the children included personal capability, being included, and having resources and satisfaction. interestingly, these seem to be each other’s opposites. it is important to point out that what is considered by one child as a barrier can be seen as a facilitator by another child. the study results were similar to that of huus et al. (2021), where social exclusion in different situations was reported as a barrier and being included was reported as a facilitator. one of the examples could be the children’s interactions in relationships, both about their own perceived capability to interact with others and about other people’s interaction with the children. barriers seemed to be imposed by the children’s general health and well-being. children with intellectual disabilities may present with co-morbid conditions, such as motor disabilities, and health conditions, such as epilepsy (gautam, bhatia & rathi 2014). it is, therefore, not surprising that the children also reported difficulties in looking after their own health and the fear of medical procedures as barriers. this barrier to participation in personal functioning was often described by the children themselves as being within the child and the child’s perceived view of self as not capable. they were, however, aware of strategies that helped maintain their health, such as eating the correct food. this can be described as a sense of self, which is one of the concepts in the family of participation-related constructs where a good sense of self facilitates participation, whilst a less good sense of self decreases it (imms et al. 2017). policies and programmes enforced by the school were reported to be quite overwhelming and unsupportive of children’s needs. the programmes were not flexible and did not easily accommodate the children. rigid and non-inclusive programmes could be a barrier to participation (guralnick 2017; king et al. 2013). the children were forced to continue with a programme in a manner that brought about discomfort, that is, it was not adapted to suit their needs (vosloo 2009). these programmes also included complex instructions and requirements when participating in activities. when developing programmes, the convention on the rights of the child emphasises including children themselves when drafting policies and programmes that involve them (sandland 2017; united nations general assembly 1989). in this way, the children are able to advise on programmes that foster and encourage participation, and their activity competence can be enhanced. the importance of being at school was rated as a facilitator to participation. the children reported the structured routine offered by the school setting as calming, thereby allowing learning to occur – again, stressing the importance of the children being engaged in school activities, not just being physically present at those activities as important for participation (imms et al. 2017). it is interesting to note that the children could report on educators or trainers who were not knowledgeable about their disability and, therefore, did not know how to adequately assist them. this hindered participation of children in certain activities. however, the presence of an educator who was skilled in adapting activities for their needs assisted them in being part of the activities or completing school tasks. education systems and services that support the inclusive education of children with disabilities are a facilitator of the participation of such children, as it ensures not only the availability of inclusive schools but also training of educators so that an adapted curriculum is available. negative attitudes of educators and the children’s peers represented a barrier to participation. these included social attitudes, such as social exclusion and bullying. the children faced barriers in being included in social networks and, therefore, were not being treated on an equal basis by their peers and educators. similar findings are reported by huus et al. (2021), where children with both physical and intellectual disabilities were found to be excluded from social groups (huus et al. 2021). moreover, these children also reported being bullied, resulting in a fear of joining social groups. it is notable that the children most likely to be bullied are those with poor communication and motor skills, such as children with intellectual disabilities (blake et al. 2012). in this view, educators and interventionists should provide disability desensitisation training to both typically developing children and children with disabilities. furthermore, training should cover the effects of bullying on other children and strategies to prevent and overcome such incidences. caregivers tend not to interact with their children with disabilities during story reading, specifically those with communication disabilities (morwane, dada & bornman 2019). interestingly, in this study, some children observed a lack of communication by the family members with them. therefore, opportunities for communication regarding everyday routines or changes in routine are limited. also, a similar relationship was reported with their siblings. interventions should, therefore, target improving participation within family routines by introducing strategies that facilitate communication with children with disabilities. interventions should also include a focus on building relationships between siblings (anaby et al. 2013). social support in the form of families is the main facilitator of being able to participate in various activities. the family often tends to encourage children to do more than they are comfortable with and, therefore, pushes them out of their comfort zone. the children perceived their parents as a key facilitator as they felt they are the ones who assist them with difficult tasks. the environment created by families, such as mealtimes, provides the children with opportunities to share information about their day and make meaningful conversation. it thus appears that mealtimes, where families gather, are where opportunities for participation occur. similarly, being included in social groups and having fun with their peers are reported as a facilitator of participation. the importance of social inclusion in children with disabilities is widely discussed in the literature (anaby et al. 2013). conchar et al. (2016) found that children with disabilities perceived having fun with friends as a facilitator of participation. the children reported that they gained a sense of belonging, and felt supported and cared for when part of a social group. being in a church provides an environment where the children feel accepted and included. given that children also reported that being able to go to church was a facilitator for participation, intervention programmes should also consider embedding activities linked to religious activities, particularly for children from countries where religion is more prevalent (mugeere et al. 2020). the unavailability of environmental services and systems, such as transportation, restricted participation of children in everyday activities. the children did not have a transport system that allowed ease of access to schools, and therefore, had to walk long distances. financial constraints restricted their participation in various activities as children were not able to attend the activities they preferred. this has clinical implications as intervention programmes should ensure that activities are accessible to children in both high-and low-resourced contexts, and that they can participate in their preferred activities. conclusion this study provides much needed data on self-reported information regarding children’s participation, particularly those who present with intellectual disabilities. taking into consideration the voices of the children with regard to their needs could facilitate participation. identified barriers and facilitators were mainly related to how other people influence the children on their participation such as their family and educators. this information is important to be considered when developing interventions aimed at enhancing the participation of the children with intellectual disabilities. furthermore, in the intervention programmes for the children with intellectual disabilities, it is important to address the attitudes of the people surrounding the children to enable participation in activities in both their family and educational and community settings. it is also important to create interventions aiming at enabling children to become self-advocates and to enhance their self-esteem. this study further provides an understanding of what hinders and facilitates the participation of children with disabilities in everyday life activities, as reported by the children themselves. again, this information is important to consider when planning and designing programmes that facilitate children’s participation at all levels of society. limitations although valuable data were obtained from the findings of the study, a number of limitations are noted. firstly, the study included children from an upper-middle-income country (south africa) and from a high-income country (sweden). the differences between the two countries in terms of the availability of systems and services, such as rehabilitation services and inclusive schools, functioning between the children could be varied and therefore barriers experienced are different. nevertheless, seeing that participation was measured in activities that were important to the children, it can be assumed that these activities are those that they engaged with. also, this study only included children with intellectual disabilities from urban areas in both countries and, therefore, did not provide a representation of children from more rural settings where it is known that participation in activities is limited. secondly, it was observed that the children had at times found it difficult to understand the questions, even though the interviews were performed with the visual aid talking matsmt. some of the children also had difficulty in expressing themselves. to counter this, the interviewers rephrased the questions and gave the children time to answer and to rest in between the questions. finally, the sample size was small and was, therefore, not representative of the population of children with intellectual disabilities. given that little research has been conducted where the voice of children with a disability is heard, future research should consider including a larger sample where children with disabilities are heard. acknowledgements the authors would like to thank the children who took time to answer all questions and share their opinions. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions k.h., r.m., m.r., s.b., e.p., i.g.b. and s.d. all contributed equally to this work. funding information funding for this study was obtained from the national research foundation (nrf) (grant number: 101566) and swedish foundation for international cooperation in research and higher education (stint) (grant number: sa2015-6253). data availability data could be made available upon request; however, the 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december 2020, from https://www.refworld.org/docid/3ae6b38f0.html. vosloo, s.-m., 2009, ‘the functioning of primary school learners with paraplegia/paraparesis in mainstream schools in the western cape, south africa. an exploratory study’, disability and rehabilitation 31(1), 23–31. https://doi.org/10.1080/09638280802280643 world health organization (who), 2018, international classification of functioning disability, viewed 02 august 2020 from https://www.who.int/classifications/icf/en/ wright, a., roberts, r., bowman, g. & crettenden, a., 2019, ‘barriers and facilitators to physical activity participation for children with physical disability: comparing and contrasting the views of children, young people, and their clinicians’, disability and rehabilitation 41(13), 1499–1507. https://doi.org/10.1080/09638288.2018.1432702 abstract introduction literature review research methods and design discussion conclusion acknowledgements references about the author(s) elana t. solomon division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa rosemary luger division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lieketseng ned division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation solomon, e.t., luger, r. & ned, l., 2024, ‘experiences of teachers in vocational programmes in special needs schools, city of cape town’, african journal of disability 13(0), a1333. https://doi.org/10.4102/ajod.v13i0.1333 original research experiences of teachers in vocational programmes in special needs schools, city of cape town elana t. solomon, rosemary luger, lieketseng ned received: 11 sept. 2023; accepted: 13 feb. 2024; published: 20 mar. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: vocational programmes run by teachers in the special needs school context can play a significant role in the vocational development of learners with severe intellectual disability (sid). this study aimed to answer the question ‘what are the challenges faced by teachers in the implementation of vocational programmes in selected public special needs schools for learners with sid in the metropolitan (metro) district within the city of cape town?’ objectives: the objectives were to describe the challenges as perceived by participants, to highlight common and contrasting challenges in the different schools and to share recommendations on support needed. method: a qualitative descriptive study was conducted. a combination of purposive and snowball sampling strategies was used to select six teachers from six special needs schools. one-on-one semi-structured interviews with teachers were performed. an interview schedule was used as a tool and all interviews were transcribed and translated into english verbatim. thematic analysis was applied. results: the findings showed that teachers encounter inadequate resources, a lack of training, and poor support systems. this study highlights the issues of existing policy and the lack of a mandatory policy on vocational programmes in south africa. conclusion: the participants’ experiences added to the existing literature by providing valuable insights into the obstacles teachers encounter in this relatively new curriculum. a multifaceted policy framework that is well funded and implemented is much needed to address the challenges identified. contribution: the findings may contribute to the development and strengthening of policies on vocational programmes within the south african context. keywords: teacher; challenges; vocational programme; vocational education and training; special needs schools; severe intellectual disability; sid; differentiated curriculum assessment policy statement; dcaps. introduction the challenges faced by students with disabilities have been drawing attention for quite some time. unfortunately, individuals with intellectual disability (id) are underrepresented in the job market worldwide, including in south africa (tøssebro & olsen 2020). in fact, research conducted in sweden showed that only 22% of people with id were employed in 2011 (arvidsson, widén & tideman 2015). in comparison, a smaller percentage of people with id are employed in south africa than in sweden (soeker et al. 2021). given the critical role that schools play in preparing learners with id for the workforce and the impact that quality preparation has on post-school outcomes, the government has made vocational training a priority in most schools, including special schools for individuals with disabilities. the united nations convention on the rights of persons with disabilities (uncrpd) advocates for the right of persons with disabilities (pwds) to access vocational programmes, training, and opportunities to gain experience in the open labour market (united nations 2006). as a signatory to the uncrpd, south africa has committed to implementing these rights within its borders. additionally, south africa’s white paper on the rights of persons with disabilities (department of social development 2015) emphasises the importance of providing equal access to vocational training and reasonable accommodation to ensure that individuals with disabilities can participate in the job market. vocational training programmes aim to equip individuals with the skills necessary to secure employment and provide opportunities for people with disabilities to access work (bartram & cavanagh 2019; cocks, thoresen & lim lee 2013). although research indicates a positive impact of vocational training, the results are not as promising for individuals with intellectual disabilities, who often struggle to find employment after completing these programmes. this is largely because of the poor execution of such programmes. for instance, a study in kwazulu-natal, south africa, found that special schools’ environments pose challenges that hinder learners with special educational needs from being adequately prepared for work (maniram 2015). specifically, the study identified a lack of training for teachers to provide the necessary skills, insufficient resources, and inadequate facilities as key issues. the research of maniram (2015) highlights the significant role that the quality of programme implementation plays in determining the post-transition outcomes of learners. the first author, an occupational therapist with more than 5 years of experience at a special needs school in the western cape province of south africa, has noticed that implementing a vocational programme can be challenging for both occupational therapists and teachers. the original research included occupational therapists, but this article only reports the findings of teachers. the differentiated curriculum assessment policy statement (dcaps) in south africa for learners with severe intellectual disability (sid) includes a relatively new vocational programme that has been implemented since 2018. the author, who has interacted with colleagues in various sid schools, has identified common challenges such as limited resources, a lack of support from senior members of the school, learners’ motivation, and finding off-site placements. however, no study has documented this anecdotal evidence. as part of her master’s degree requirements, the author conducted a study to document the challenges and hopes that the findings will assist educational authorities in future planning and policy revisions. literature review intellectual disability is characterised by limitations in intellectual functioning and adaptive behaviour, which means that individuals with id have difficulties in various cognitive abilities and exhibit significant functional deficits (american psychiatric association 2013). this disability is lifelong and is one of the most common forms of developmental disabilities, often diagnosed during the developmental period before the age of 18 (american psychiatric association 2013). intellectual disability is typically assessed using standardised psychometric tests. difficulties experienced by learners with severe intellectual disability within the education system learners with sid often experience difficulties within the education system. they may struggle with tasks such as reading, written work, and basic mathematics (adams 2021; american psychiatric association 2013). they may also have limited vocabulary and difficulty understanding complex and abstract concepts. processing information and recalling information from memory are challenging for individuals with sid, and they have reduced ability to comprehend and learn new, complex information. this impacts their performance in the classroom (cluley 2017). these learners tend to prefer learning through practical applications rather than abstract and complex subjects. they face difficulties in the workplace, particularly with tasks that require extensive problem-solving and steps. research indicates that individuals with sid often experience poor post-school employment outcomes (qian et al. 2018). therefore, it is crucial to provide extraordinary support in various school activities to better prepare them for life. given the poor employment outcomes, it is essential to consider the education of individuals with sid. bouck (2014) emphasised the need for critical investigation and research to determine the factors within the school context that contribute to the poor post-school employment outcomes of these learners. legislation and policy on the vocational training of learners with severe intellectual disability in south africa and south african schooling for learners with severe intellectual disability ideologies and policies related to education have an impact on curriculum development across the globe. historically, individuals with sid were excluded from the education and training systems and experienced social exclusion, discrimination, and marginalisation in both education and employment (ditchman et al. 2016). prior to 1994, south africa was governed by the apartheid government, which was notorious for its racial segregation and discrimination against people of colour. this segregation extended to the education sector, where it was based not only on race but also on disability (engelbrecht 2006). following the establishment of democracy in 1994, the new government recognised the need to transform south africa’s education system and address the discriminatory practices that had excluded individuals with severe disabilities (rens & louw 2021). in post-apartheid south africa, inclusive education and training began with the implementation of a single curriculum designed for all learners, including those with id, with the goal of addressing the inequalities that had arisen from the apartheid era (mckenzie 2020). however, this curriculum did not adequately address the skills and vocational needs of learners with sid, and therefore was not consistent with the education white paper 6: building an inclusive education and training system. as a result, the south african government introduced a pilot curriculum in 2018 called the draft dcaps for sid grade r-5, which is designed for those who have difficulty accessing the academic curriculum. the dcaps curriculum is designed to provide home language, mathematics, and life skills education for learners aged 5–18. at the age of 14, additional languages and vocational subjects or electives are introduced, and these subjects are continued until the learner is 18 years old. the vocational subjects covered include agriculture, hairdressing, woodwork, plumbing, arts and crafts, hospitality, office administration, welding, among others. the purpose of this curriculum is to equip learners with practical and vocational skills that will prepare them for employment upon reaching 18 years old. despite the existence of legislation and wide range of policies in south africa, the majority of individuals with disabilities, particularly those with intellectual disabilities, remain unemployed in the labour force. without a robust and well-developed vocational training programme and appropriate support structures, individuals with intellectual disabilities are at a higher risk of unemployment. role of teachers in vocational programme and the challenges experienced vocational programmes are designed to equip individuals with practical skills through the guidance of educators. these practical skills can encompass a wide range of activities, such as cooking, gardening, housekeeping, childcare, welding, motor mechanics, and carpentry. the primary focus of these programmes is to provide knowledge and hands-on training, with theoretical and academic tasks playing a relatively small role (shaffeei, razalli & hanif 2020; zhang 2009). educators in these programmes aim to bridge the gap between theoretical knowledge and practical applications in real-world settings. several studies conducted across different countries have identified challenges with existing vocational programmes. for instance, research conducted in minnesota, usa, revealed obstacles such as inadequate student skills, poor family involvement, limited job opportunities, and difficulties in collaborating with businesses (rooney 2016). similarly, a study in saudi arabia highlighted challenges related to job shadowing and placing learners in the community to gain practical experience as part of the vocational programme. these challenges included limited partnership with employers and a lack of job opportunities for learners in the community. other obstacles included insufficient administrative support, time constraints between school and job shadowing, safety concerns when taking learners to job shadowing sites, inadequate staff to accompany learners, and limited funding (almalky 2018). prior to this study, kim and raymond (2010) used the same data collection tool in the usa and ranked barriers from highest to lowest. barriers were found to include insufficient staff, policy and funding issues. in saudi arabia, teachers reported the absence of support from the administration as the most significant obstacle, followed by employers’ poor cooperation with special schools and the lack of cooperation from other community agencies (almalky 2018). in china, a study exploring the perspectives of chinese teachers on school-to-work transition services for youth with intellectual disabilities identified learners’ functional limitations, negative community attitudes towards disability, inadequate quality of transition programmes, and inadequate government and societal support as key barriers to successful school-to-work transitions (xu, dempsey & foreman 2014). in kenya, the educational system has a curriculum to guide teachers in their teaching and learning activities. however, maina and muthee (2018) found that many educators lack the necessary training to provide instruction that prepares learners with id for the future. this deficiency in training negatively affects the delivery of such programmes. similarly, in south africa, a study by maniram (2015) discovered that teachers in pietermaritzburg, kwazulu-natal, faced challenges such as a lack of training, resources, and funds to run programmes for learners with special educational needs. other obstacles included inadequate parental role modelling, learners’ low socio-economic status, stigma, large class sizes, and negative attitudes from the business community. at the time of the study, there was no formal vocational programme or curriculum for learners with special educational needs, which made it difficult to accommodate their unique learning requirements. it is important to observe that this study was conducted prior to the implementation of dcaps. according to vlachos (2008), the lack of vocational training in special needs schools was a significant barrier for learners with id in south africa. this issue was identified by teachers of these learners. ten years later, the introduction of the dcaps curriculum in south africa included vocational and skills subjects for sid learners. however, there is limited research on the experiences of those involved in implementing this new curriculum since 2018. specifically, there are no studies documenting the challenges of implementing this new curriculum of vocational and skills training from the perspectives of teachers in south africa. the only recent study conducted in south africa is by rens and louw (2021), which focused on teachers’ experiences of implementing life skills in caps for learners with sid in special schools. this study found that teachers were facing challenges such as limited resources, the lack of workbooks, heavy workload, and too many assessments. the study suggested that training is necessary for effective implementation of life skills in caps. research methods and design a qualitative descriptive study was conducted to provide in-depth reports of the challenges facing teachers in the implementation of vocational programmes in special needs schools for learners with sid. a qualitative approach involves capturing, exploring and understanding the individual, institution or groups’ experiences and perspectives in depth (o’leary 2017). this descriptive study was appropriate as it describes the phenomena of interest (colorafi & evans 2016), that is, the self-reported challenges experienced by teachers. the objectives were to describe the challenges as perceived by participants, to highlight common and contrasting challenges in the different schools and to share recommendations on support needed. research study setting the western cape province is one of the nine provinces in south africa and has a population of 7 005 741 million people (statistics south africa 2020). the education districts comprise four urban districts and four rural districts (western cape government n.d.). there are 18 public special schools for learners with sid across the metropolitan (metro) districts within the city of cape town. the sid schools accommodate learners from 5 to 18 years old. they have specialised and therapeutic support provided by health professionals such as occupational therapists, professional nurses, speech therapists, among others. the number of therapeutic support personnel and number of teaching staff depends on the learner enrolment numbers at each school. the admission criteria include that the learner must have a medical or psychological report stating that the learner has severe intellectual impairment. the school follows the dcaps grade r to grade 5, which is specifically for learners with sid. research study population the study population for this article were teachers who are involved in implementing vocational training programmes in special needs schools for learners with sid within the metro districts of the city of cape town. schools and participants were chosen based on the inclusion and exclusion criteria discussed next. inclusion and exclusion criteria inclusion criteria special schools: public special needs schools for learners with sid within the metro education district within the city of cape town public special needs schools that have a teacher who has provided or is currently providing vocational services. service providers teachers: teachers who have at least two or more years of experience in providing vocational services in public special needs schools for learners with sid in their current school. all genders were included. exclusion criteria special schools special needs schools for learners with sid within the rural districts in the western cape. (i acknowledge that more challenges are encountered in schools in rural areas. however, i wanted to focus on the metro areas, because i work in the metro district, and i am aware of some of the challenges experienced in the metro, which need to be documented. given the scope of the small project and because the authors were situated in the metro, they did not have a budget to travel to rural areas). private schools were excluded. service providers social workers, psychologists or any other professional other than teachers who run vocational programmes and teacher assistants were excluded. recruitment and sampling special needs schools all 18 schools were first approached by email. seven schools expressed interest and 6 out of the 18 special needs schools met the inclusion criteria and participated, including at least one from each of the four districts. the reason for the small sample size was because of the nature and size of the research project for degree purposes. furthermore, qualitative studies are not about quantity, but about rich information provided by small number of participants (bradshaw, atkinson & doody 2017; o’leary 2017). study participants: teachers a total of six teachers volunteered to participate in my study (see table 1 for a summary and demographic information of participants). table 1: summary and demographic information of participants – teachers. data collection strategies, data collection tool and process upon receiving the signed consent forms, we contacted each participant and asked which method will be convenient for them: video conferencing or face-to-face for me to conduct the interview. participants were given these two options to choose based on their convenience or in cases of technical issues. data were gathered via individual semi-structured interviews. the interviews lasted between 45 min and 60 min. three participants chose video conferencing, and three participants chose face-to-face interviews. all interviews were conducted in english. there was an option if participants preferred the interview to be conducted in a different language in which case a translator would be made available. no participants required a translator. data vouchers were provided to participants for video conferencing. during all the interviews, the first author used a predetermined interview schedule that she designed as a tool in order to collect data. kallio, pietila and johnson (2016) said that it is vital to create a semi-structured interview schedule that will provide rigorous data collection to confirm the trustworthiness of the research. interviews were recorded using two recording devices as a form of back-up, in case one was not clear or got lost. all recorded data were stored in secured cloud storage with a password for 5 years. only the first author had the password to access the data. data analysis strategies we applied the six-step framework as described by braun and clarke (2006) to conduct an inductive thematic data analysis. this strategy helped to identify, analyse and see the patterns in the data (braun & clarke 2006). inductive thematic analysis allows data to determine emerging themes. we wanted the data to speak for itself and provide us with the knowledge and themes, rather than trying to fit the data into pre-existing themes. first step was that all interviews were transcribed and translated into english verbatim in order to be familiar with the data, which involves reading and rereading the transcribed data as many times as possible. we also engaged with the data through listening to the recordings and writing notes and ideas for coding. we proceeded to the second step, which is identifying and generating codes using highlighters to code the data. we also created a table to organise and code the data. the third step was extracting the themes, and this was carried out by grouping the coded or relevant data into potential themes. the fourth step was to review the themes, which involved checking if the themes are in line with the coded data and the entire data set. reviewing and in-depth studying of the themes was performed until data saturation was accomplished and no further themes emerged (moser & korstjens 2018). the fifth step was to define and name themes and this was performed by continuous analysis of each theme to give meaning to it and name it. the sixth step was producing a report, which included final analysis, discussion of the analysis in relation to the research question and then producing the report with the findings. ethical considerations university of stellenbosch health research ethics committee granted ethical approval to conduct this study (s21/11/246). ethical approval was obtained from the institutional review board at a western cape public university that approved the research, and ethics consent was received on 03 march 2022. after a letter of approval from the western cape education department was obtained (reference number: 20220330-1160), the recruitment process commenced from april 2022 to august 2022. the study was conducted according to the ethical guidelines and principles of the international declaration of helsinki, the south african guidelines for good clinical practice (2006), the medical research council (mrc) ethical guidelines for research (2002), and the department of health ethics in health research: principles, processes and studies (2015). a written informed consent was provided before the start of the interview and was obtained from all participants. confidentiality was maintained throughout the study and the identity of participants was kept anonymous. a pseudonym was used as an alternative to the participants’ names on all documents and audio recordings. findings through inductive thematic analysis, seven themes emerged from the study data and were aligned with the research aim of the study. the seven themes were then arranged into three overarching themes. the three themes were inadequate resources, a lack of training, and poor support systems. theme 1: inadequate resources this theme speaks about how the lack of resources, facilities and financial resources create challenges for teachers in implementing their vocational programmes at their respective schools. the participants described their schools as lacking proper facilities, which are equipped like a vocational workshop to enable vocational training. this left them unable to teach or provide training optimally: ‘um, unfortunately, this is our space [classroom]. we’re supposed to have a separate consumer studies room, but it hasn’t come to fruition yet … we don’t have a, a proper consumer study room …’ (participant 6, serena, teacher) another teacher expressed a similar problem. she not only teaches hospitality but also nails and beauty, and arts and crafts. her classroom is not fitted with running water, a washbasin, sink or oven: ‘when i want to do hospitality, i have a very small, you see those small ovens that you can put on the desk, a small oven that, um, i must got fetch in the office every time i need it and sign it out.’ (participant 10, fiona, teacher) ‘i was given a few small basins …, we have to go fetch water outside by the, by the main kitchen and bring it to class.’ (participant 10, fiona, teacher) the participants experienced challenges in terms of material and financial resources in order to run the vocational programme effectively. it is also evident in the participants’ narrative that they are frustrated by the lack of funding from education management at various levels: ‘we don’t have the resources. it’s a big challenge.’ (participant 1, amila, teacher) one participant expressed she would buy the materials from her own pocket in order to teach: ‘it’s like, i must go beg for money to buy a kettle, money to buy a set of knives or whatever, you know, whereas that money is due to your elective. you shouldn’t be begging … you know, it’s, it’s really bad … so, i buy my own stuff.’ (participant 10, fiona, teacher) ‘… arts and crafts also, um, very little is given. so, i try to source, or i buy, or i ask for from various places. so, it’s very, very difficult to implement.’ (participant 10, fiona, teacher) beth shared that money was given to the school once-off for skills by the department of education when the curriculum was first implemented: ‘… the department once gave us the money for the skills and vocational programmes. it was a once off and they never gave us again … it was the first and the last they even given us at all.’ (participant 2, beth, teacher) various teachers shared how difficult it is to get funding from the management of the school to buy resources and materials needed for their respective vocational subjects: ‘… the principal, they are refusing to give us money to buy the ingredients or to buy us the material. and it is the problem …’ (participant 1, amila, teacher) amila added that it is not about transparency, but rather it is about owning the money that is the problem: ‘i won’t call that transparency because when we doing budget, we’ll do it together. but then when it comes to owning it … like, like when i’m, when i’m saying owning, uh, i mean like when the money has to be used, there will be no money …’ (participant 1, amila, teacher) theme 2: a lack of training effective implementation of vocational programmes in special schools requires sufficient training for the teachers, to be able to deliver. the participants in this study showed that they have not received adequate training in the vocational programmes and curriculum. participants who attended the dcaps workshop felt that the time allocated for workshops was insufficient: ‘we need a proper training. we didn’t ma get much training … for skills training, there wasn’t much …’ (participant 2, beth, teacher) ‘it was, there was a one-day course when …, it should be a week or a month or some months, but that was a one-day. everything was just summarised.’ (participant 2, beth, teacher) the programme also does not come with textbooks. teachers must do research and find different resources for learners with different abilities to learn and participate, which takes much time and planning: ‘at our school, i don’t have a textbook so that i can have a curriculum in a file. i must obviously get my lesson plans from there, but there’s none, like in mainstream where you have a set textbook.’ (participant 10, fiona, teacher) theme 3: poor support systems theme 3 focused on inadequate support structures as challenges expressed by participants. the theme was presented and categorised into two sub-themes. sub-theme a: non-involvement of parents: participants shared that non-involvement of parents was a challenge in the implementation. parents do not attend meetings; parents are not interested and do not ensure carry over at home: ‘the parents’ involvement, our parents are not interested.’ (participant 1, ziqu, teacher) ‘parents are not fully involved in, in the education of these kids, especially these kids. they don’t care.’ (participant 2, beth, teacher) participants described that time for teaching is limited because of issues of transport such as buses being broken down or unavailable: ‘the scholar transport, which the derail is everything when it comes to teaching and learning, teaching, … because you find that the buses are broken, buses are not there. they will be, there are always issues when it comes to the buses. so, learners will arrive late and then they will leave early. so, you cannot finish your programme because of that.’ (participant 1, amila, teacher) ‘… short of the bus buses, the learners have to leave early …’ (participant 2, beth, teacher) participants highlighted that they teach in mixed-abilities and multi-grade classrooms – something that they found challenging. this is because there are not enough teachers to allow specialist subjects. for instance, gadija has a class with students between 16and 18 years old for 5 years, where she not only teaches sewing as a vocational subject but also has to incorporate maths, life skills, english and afrikaans, etc. she expressed the challenge of having to provide different activities to accommodate for all levels of abilities and age groups. this provision of different activities for different abilities has to be in place within each subject she teaches: ‘… intrinsic challenge that’s part of teaching at a school, that the children are all on different levels, you know, mental ability levels and physical ability levels also. i have different levels of ability in how many subjects in english, in afrikaans, in maths, in life sciences, in sewing. and i need to cater for all different because you, you know, children are 16, 17, 18 in my class. all levels of functionality understanding. so, i need to do cater for all the levels in maths and have all different kinds of activities …’ (participant 12, gadija, teacher) sub theme b: limited support and work or training opportunities in the community: work-based learning and/or job shadowing is a part of the vocational programme that gives learners exposure to what it is like in the real working world. however, participants shared experiences of challenges of having to convince the employers to partner with them: ‘… the training part is, is, is the hump you need to get over. you need to convince the manager or manageress of the place that, um, even if you give the child a chance to clean the table, … and then you convince them to, if there’s a spot open, will you allow this child? takes a lot of work, takes a lot of work.’ (participant 10, fiona, teacher) the participants added that there is no support or a ‘job coach’ for learners once they are placed in the open labour market or during the transition period: ‘we have to hustle and struggle and, and out of 15, you get two placed maybe for a job, if you’re lucky.’ (participant 10, fiona, teacher) ‘… after school. i mean, when they’re going to the open labour market, it’s not like the workshops who are designed for our children. open labour market. they just left to their own devices. ja. and they need constant supervision.’ (participant 6, serena, teacher) the additional challenge is the lack of accredited certification after completion of the dcaps programme. the dcaps curriculum goes up to grade 5 and is not part of the national qualifications framework. participants expressed challenges in assisting and helping find opportunities for their vocational learners as their learners who are 18-years old and are exiting the school system, leave with a non-accredited school leaving certificate, which makes it more difficult to assist learners in accessing training, learnerships and employment. fiona expressed the school leaving certificate: ‘… means nothing. it’s, it’s not even like our grade nine, the one boy he’s also wheelchair bound. shame. he was in tears … he really wanted to go to [name of college] to study further and, or the, the, um, colleges. and he couldn’t because the report says grade five …’ (participant 10, fiona, teacher) fiona added that the community has a different mindset and attitudes when they see someone with a grade 5 report, which creates a challenge to give learners opportunities: ‘… how do people out there see that report view that 18 year old. good grief, you know, an older person that comes from the old standard. i’m gonna look at that report and think, oh, you know, this is standard three mind-set. this child. what can they do?’ (participant 10, fiona, teacher) discussion a deep analysis was conducted across the themes in this study, revealing the critical issues that teachers face in the implementation of vocational programmes for learners with sid in special needs schools within the city of cape town’s metro district. the study revealed that inadequate resources, a lack of training, and poor support systems are the main challenges that teachers face. to address these challenges, the policies on vocational training programmes for special needs schools in south africa need to be reformed, and the implementation strategies need to be strengthened. issues of policies and implementation inadequate resources the study reveals that one of the key issues preventing teachers from implementing vocational programmes for learners with sid is the scarcity of resources within special needs schools. participants reported difficulties in obtaining essential resources and funding from their school’s management team (smt), with some being told that there is no available budget. however, one of the participants, who is part of the school’s management team, expressed that the government only provided a one-time grant for the vocational programme when it was first introduced in 2018, and that the amount was insufficient. furthermore, the insufficient funding for vocational training programmes from the government is also a common issue in other countries such as the usa, saudi arabia, and china (almalky 2018; xu et al. 2014). motala (2006) reported that ordinary public schools in south african townships following an academic curriculum experience inadequate resources, which is consistent with our study of participants in special needs schools in disadvantaged communities. maaniram (2015) conducted a study on vocational training programmes for learners with special educational needs in kwazulu-natal before the implementation of the dcaps programme. those schools also faced a lack of financial support from the government, leading to insufficient facilities and resources. this study is consistent with my research on the lack of funding for vocational programmes. it is evident that the shortage of resources is primarily caused by the government’s inadequate funding and mismanagement of financial resources within schools. inequalities and uneven resource allocation in special needs schools, stemming from south africa’s apartheid history, have contributed to numerous challenges faced by participants in their respective schools. as per ndimande (2016), special needs schools in black and mixed race communities were underfunded during apartheid. despite the passage of time, two schools in townships and three in disadvantaged communities are still deeply affected. motala (2006) highlighted that underprivileged communities’ ordinary or mainstream schools struggle to secure local funding, a situation also experienced by most special needs schools in this study. wealthier schools in affluent neighbourhoods, on the other hand, rely on tuition fees, donations and fundraising events, enabling them to acquire necessary facilities and resources, and hire additional staff. this disparity results in under-resourced schools in townships compared to their well-resourced counterparts in more affluent areas because of the economic level of the community around them (ndimande 2006). participants in this study reported that their learners and families come from low socio-economic backgrounds, with high unemployment rates within their special schools’ communities. the lingering effects of apartheid have perpetuated poverty in these communities, making it challenging for special needs schools to fundraise or obtain local funding. furthermore, participants cited the lack of proper vocational workshops and facilities as a significant issue, similar to the findings of maaniram (2015). according to maaniram’s (2015) research, two out of three special needs schools for learners with special educational needs in pietermaritzburg have adequate infrastructure, which allows for optimal teaching and learning. as a result, learners with different disabilities have a better chance of acquiring skills. no information was provided on the source of funding for the successful implementation. however, one of the schools in the study lacked specialist rooms and facilities, which limited teaching and prevented learners from developing their skills. it is unclear whether this school was located in an urban, rural, or township area of pietermaritzburg. my research study contributes to the literature by highlighting the challenges faced by teachers in special needs schools for learners with sid in implementing the dcaps programme. furthermore, my findings provide a comprehensive description of the challenges faced by special needs schools for sid in cape town, including two from townships and three in disadvantaged communities from the post-apartheid era. despite government policies aimed at addressing resource inequalities in south african schools, there is a lack of funding for special needs schools in townships and disadvantaged communities, as well as for those with diverse socio-economic backgrounds. in addition, policies on funding for vocational programmes, specifically in special needs schools, are lacking. vocational programmes require substantial funding for materials, equipment, maintenance, and resources to ensure effective implementation. special schools cater to learners who have high support requirements, which can result in additional expenses for the school, such as acquiring assistive devices and hiring assistants to aid in the teaching and learning process for learners with sid. a lack of training the shortage of training for teachers in special needs schools who teach vocational programmes in south africa is because of unclear policies. when the dcaps was introduced as a pilot project, there were no comprehensive training guidelines provided for teachers. among the six teachers in this study, five reported that the training they received was insufficient. this finding is consistent with cotton (2000), who emphasised the lack of training for vocational teachers working with children with special needs, which ultimately leads to many of the challenges teachers face in implementation. as a result of inadequate training, the current participants have a challenging time differentiating the dcaps curriculum, integrating subjects, and creating various resources to accommodate different levels and needs. participants feel overwhelmed by working with learners who have sid and exhibit diverse levels of functioning, behavioural, and emotional issues, which are different from learners without id. the lack of understanding of learners with sid and difficulty in planning and managing them were apparent in their narratives. the issue of inadequate training is prevalent in studies that highlight poor teaching methodologies and difficulty in differentiating the curriculum for learners with diverse needs. this problem seems to be common among teachers in other special needs schools in both developed and developing countries (ahammed 2021; horne & timmons 2009). research conducted in swaziland, a low-income nation, found that teachers in inclusive educational environments face similar challenges when working with children with various needs and multiple disabilities, feeling unsupported and inadequately trained to provide the necessary support to learners (bagree & lewis 2013). the challenge of differentiating instruction for learners with sid is further exacerbated by a lack of understanding of sid among some participants in the study. it seems that some teachers adopt a mainstream approach when teaching learners with sid, which may be attributed to the insufficient support and inadequate subject advisors in special needs schools. these advisors are responsible for offering curriculum guidance and specialised training in the specific subjects that teachers teach. poor support systems the reasons for the absence of support systems are multifaceted and intricate. this issue can be further categorised into four areas: the school level, community level, institutional and political level. firstly, the absence of support systems is because of unclear policies in the drafted dcaps curriculum (vocational programme) regarding roles, responsibilities, and support needed to achieve its objectives. secondly, there are no rules or plans outlined in educational policy documents and guidelines for monitoring and ensuring the availability of support for the implementation of the curriculum and/or vocational programme. school level regarding the school level, research by rooney (2016) emphasises the significant role that parental involvement plays in reinforcing learning, providing learners with opportunities to grow in their environment, and facilitating the transition from school to work. in this study, when parents were not involved, implementing vocational programmes for participants became challenging. the participants reported that parents neither attend meetings nor complete practical assignments at home, making it difficult to effectively implement the programme. these findings align with those of rooney (2016). furthermore, maniram (2015) in pietermaritzburg, kwazulu-natal, south africa, noticed that the lack of parental involvement in learners’ environments hinders preparation for employment. it is worth noting that various studies worldwide note that learners face different contextual challenges that affect the lack of family involvement (humphrey-taylor 2015). research indicates that the reasons for insufficient parental participation from disadvantaged communities are rooted in low socio-economic context, limited vision, work obligations, family dynamics, educational level, and a lack of empowerment (munje & mncube 2018). these factors may explain why study participants are experiencing a lack of parental involvement, as many of their learners and parents come from disadvantaged communities, contributing to poor implementation. the ongoing systemic issues such as the legacy of apartheid continue to perpetuate poverty and exacerbate existing problems. one of the challenges faced in the implementation of vocational programmes is the shortage of specialised workbooks and textbooks. participants in the study reported that the new dcaps programme did not provide textbooks, making it difficult for them to access resources for different levels of functioning. according to the participants, using workbooks is crucial as without it, extensive research, planning and time is required. this finding aligns with the research conducted by rens and louw (2021) on teachers’ experiences in implementing the life skills caps curriculum for learners with sid in both well-resourced and under-resourced schools in the north west province of south africa. they concluded that the lack of specialised books, particularly for the sid curriculum, hinders implementation and poses a significant problem for teachers. although not specific to vocational training, this study highlights the link between the absence of workbooks and poor implementation. it remains unclear why the department of education in south africa did not provide textbooks for the dcaps programme, but this may be because of poor planning, as the policy document was not well-structured for learners with sid. for instance, in the hospitality programme, the teachers were instructed to start cooking or baking with the learners in week two, without any prior introduction to basic hygiene or familiarisation with the equipment and materials required for the task. according to the research, there is a problem with the school not following a budget or misusing funds, which leads to the participants being unable to receive the money they were expecting to purchase materials. the findings also showed that a culture of honesty, transparency, and openness is lacking in the school. although there were limited studies available in the literature on this topic related to special schools, metsy (2006) and rangongo et al. (2016) found that school principals and governing bodies rarely consult with teachers on financial matters related to the school, which affects the school’s ability to achieve its educational objectives. aina and bipath (2020) also stated that a lack of openness and involvement of others in financial management mostly occurs in schools situated in townships. another possible explanation for the misuse of funds could be the school’s tight budget, especially in disadvantaged communities, which may require prioritising or redirecting funds where they are most needed. community level this study identified a difficulty in persuading employers within the community to accept learners with sid for job shadowing, which presents a challenge for participants in accessing job shadowing and work opportunities and, consequently, makes the implementation of the programme challenging. participants in this study indicated that employers are reluctant to accept learners from special needs schools for job shadowing. these findings align with those reported by almalky (2018) in saudi arabia, who found that teachers reported that the community was not supportive, and employers were not willing to collaborate with schools. this was identified as a significant barrier to the implementation of community-based vocational education (job shadowing). the lack of policy in south africa that provides job shadowing training for learners with sid contributes to the difficulty in convincing employers and dealing with the community, who are not supportive in accepting learners for job shadowing. the absence of policy outcomes, advantages of job shadowing programmes, well-defined roles for special needs schools and employers, incentives, and support (such as supervisor and protection for the employer) exacerbates the issue. additionally, studies have shown that the scarcity of work opportunities makes it challenging for participants to access job shadowing and work placements and, consequently, presents a challenge in implementing the programme. according to rooney (2016) in the usa and almalky (2018) in saudi arabia, limited work opportunities pose a significant obstacle, while xu et al. (2014) from china also experienced that the lack of work opportunities served as a barrier in the implementation of their vocational programmes. the problem of limited employment prospects in this study is largely influenced by the historical legacy of apartheid, which forced people of mixed race to be segregated and reside in townships and disadvantaged areas located far away from the city, where there are very few opportunities available. in south africa, there is a shortage of jobs, and both the workforce and businesses are not sufficiently aware of the needs of individuals with disabilities, such as id. policy level curriculum policies and guidelines play a critical role in providing direction to those responsible for implementing programmes. however, the existing policies on vocational training programmes for special needs schools in south africa catering to learners with sid are insufficient. this results in unclear roles, responsibilities, accountabilities, and processes. in this study, participants highlighted that a lack of adequate staff poses challenges in implementation. the presence of a job coach or supervisor as part of the process was considered vital as school-leavers with sid require additional support during the transition period. these findings align with almalky (2018), who reported insufficient staff as a barrier to implementation. earlier, xu et al. (2014) identified inadequate support as a challenge and emphasised the need for specialised job officers to assist learners with sid in adapting to the open labour market. this research highlights the substantial difficulties that participants experience in helping and supporting the job placement process. according to aston, banks, and shevlin’s (2021) study, individuals with intellectual disabilities face significant obstacles in accessing post-school opportunities because of the lack of formal, recognised qualifications or certifications. vlachos’ (2008) research in south africa revealed that the majority of individuals with intellectual disabilities cannot enrol in the skills education training authority (seta) programmes because of the absence of grade 9 qualifications. there is a scarcity of studies in other parts of the world that examine the challenges teachers face in facilitating placement for learners who lack an accredited school leaving certificate. this issue stems from south africa’s policy not clearly addressing the inclusion of individuals with sid in the national qualifications framework, and a lack of policy to strengthen the implementation of this process, allowing individuals with sid to acquire an adapted accredited certificate that accommodates their skills and abilities. limitations a drawback of this study is the scarcity of prior research on the subject within south africa. since the implementation of the dcaps in special needs schools for learners with sid began in 2018, there is a lack of available and published literature on the topic. as a result of constraints such as budget, scope, and timeframe, it was not feasible to interview teachers representing each of the 16 electives and/or vocational subjects. furthermore, schools in rural areas were not included in the study, which may have provided valuable insights into the challenges they face. recommendations taking into account the cost of operating a vocational programme within special needs schools that require high levels of support, the south african government should allocate extra funding to the department of education to provide the provincial departments with the necessary resources and facilities for learners with sid. a needs analysis should be conducted by trained personnel from the department of education at special needs schools, and a financial budget should be compiled and submitted to the south african government. the aim is to raise awareness of the practical costs and expenses involved in running vocational programmes for learners with sid in special needs schools. it is suggested that the government revise the budget in light of these findings. in order to effectively address the unique needs of the south african context, a comprehensive, multifaceted policy framework should be implemented and pilot-tested using evidence-based principles. this framework should encompass not only formal curriculum instruction, such as dcaps, but also a range of support systems that are essential components of a vocational programme, including transition support personnel (job coaches). the government could require that all special needs schools with sid implement vocational programmes under a policy framework that includes comprehensive guidelines and support. this framework should outline the roles and responsibilities of the vocational and placement committees within the schools, as well as the accountabilities, funding allocation, and transparency processes that are necessary for success. the framework should be mandatory by government and include all necessary documentation to ensure that the vocational programmes are implemented effectively. legislation of a curriculum for learners with sid and implementation of an accredited or recognised certificate upon completion of a vocational programme should be added to the existing policies and guidelines. the government should allocate financial resources to support a comprehensive national or provincial vocational and transition assistance programme, which will enhance intersectoral cooperation among educational institutions, agencies, local companies, and the broader community. to encourage participation and motivation from companies, businesses, and the community, additional incentives should be provided for hiring individuals with sid when they partner with these programmes. it is recommended that research study similar to this study be conducted nationally in the future, as this study only focuses on the metro districts within the city of cape town of the western province. furthermore, it is suggested that rural schools be included in the research, as they can offer valuable insights into the unique challenges they face. investigating the cost of running vocational programmes, such as hospitality and agriculture, and comparing them to the current funding allocated to schools can provide valuable data regarding funding allocation. conclusion the study identified several challenges faced by teachers in implementing vocational programmes for learners with sid in the metro district of cape town, south africa. specifically, inadequate resources, a lack of training, and poor support structures were identified as key issues. in addition, the study highlighted the need for stronger policies and clearer guidelines on vocational programmes in special needs schools. it is recommended that the south african government develop and strengthen such policies to improve the implementation and provide increased support structures for teachers and learners. a multi-faceted policy framework that is tailored to the south african context should be implemented and piloted based on evidence-based principles. acknowledgements the authors wish to thank the teachers who participated in this study. some of the work in this article stems from elana solomon’s thesis, entitled ‘challenges faced by occupational therapists and teachers in the implementation of vocational programmes in selected special needs schools for learners with sid in the metro districts within the city of cape town’, presented in partial fulfilment for the degree of master in human rehabilitation studies in the faculty of medicine and health sciences at stellenbosch university. this article is partially based on the author’s thesis for the degree of master in human rehabilitation studies at the faculty of medicine and health sciences, stellenbosch university, south africa, with supervisor associate professor lieketseng ned and co-supervisor ms rosemary luger. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions e.s. conducted data collection and data analysis for master’s degree purposes. e.s. drafted the first draft of the article. l.n. and r.l. supervised e.s. during her master’s studies. all authors made conceptual contributions to the 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(watson 2004:3) although the nature of occupation has long been the subject of study and practice by the profession in developed countries, there were few textbooks at that time by occupational therapists working in developing countries. the text challenged readers to envisage community-orientated, occupation-based practices beyond conventional individual therapeutic interventions in clinical settings. this article captures the reflections of chapter authors on writing the textbook and its impact on scholarship. in so doing, it acknowledges the visionary role of swartz as a co-editor in publishing a ‘gift to the profession of occupational therapy’, as it was described by betty r. hasselkus, emeritus professor, university of wisconsin-madison, usa, in the foreword (watson & swartz 2004:xiv). disability studies and occupational therapy theory share conceptual synergies in recognising that issues of importance to people with disabilities are not typically medically-oriented, but rather sociallyand environmentally-orientated (harrison et al. 2021; sheth et al. 2021). conceptual synergies also exist with the discipline of occupational science that promotes investigation of the nature of occupation, how people occupy their time and how occupation affects health and well-being (christiansen & townsend 2010; yerxa 2009). working for broader social change, occupational therapists and occupational scientists integrate disability studies into education, research, and practice by prioritising people’s lived experiences, applying critical approaches, and using occupation-based participatory methodologies (harrison et al. 2021; sheth et al. 2021). occupational therapy has historically been linked to individual rehabilitation and the medical model of disability because of its focus on the therapeutic use of activities to effect a remedy for a person’s inability to do things because of illness or injury (kielhofner 2005). the profession has also been linked to community development and the social model of disability because of its focus on promoting occupational justice in groups, communities and populations that experience disempowerment, exclusion, and barriers to participation (booi, dabula & duncan 2024; watson & swartz 2004). occupational justice focuses on the inherent right of humans to participate in occupations, construed as their personally meaningful and goal-directed use of time (stadnyk, townsend & wilcock 2010). occupational injustice occurs when a person or a group of people including those with disability is denied, excluded from or deprived of opportunity to pursue meaningful occupations or when unchosen occupations are imposed upon them (hocking 2017; stadnyk et al. 2010). viewing humans as occupational beings foregrounds the shared concern of disability studies, occupational therapy and occupational science with disability as a human rights and development issue (harrison et al. 2021). occupation-based approaches for social inclusion are being used to promote community development and redress occupational injustice (van bruggen, kantartzis & pollard 2020; sakellariou & pollard 2016). background in the early 2000s, professor ruth watson, then head of the division of occupational therapy at the university of cape town (uct) invited professor leslie swartz to support the occupational therapy team of clinicians, academics and researchers during a leadership transition. the outcome of the invitation was a textbook that documented the team’s occupation-centred research and practice in the post-apartheid south african context. applying disability theory, occupational science concepts and occupational therapy interventions in a series of case studies the authors described how a socially transformative niche for the profession may be realised. hasselkus, an international occupational therapy scholar, described the textbook as: [a] seamless text in which the authors speak in a unified voice as they tell the story of occupational therapy and south africa, and, thus, the story of developing countries around the world … in this book we have substance, complexity and deep understandings. (watson & swartz 2004:xiv) approach for this article, a two-pronged quantitative and qualitative approach was used to highlight the contribution of professor swartz. quantitative data pertained to the number of citations attributed to the textbook between 2004 and 2024. numeric data were collected through the web of science and google scholar online portals using relevant search words. qualitative data were obtained by inviting chapter authors (n = 12) via an email to submit written reflections on the textbook writing project. the email explained the purpose of the swartz festschrift of the special edition of the african journal of disability, and invited authors to submit a word document (unspecified wordcount) with free-association reflections on working with professor swartz during the project and the subsequent impact of the textbook on their practice and the profession. authors were not given specific questions or guidelines for reflection. the email invitation also indicated that submission of the reflection as textual data would be considered ethical approval for the inclusion of anonymised quotes in this article. one author indicated that she would prefer her quotes not to be anonymised. nine authors submitted reflections. three authors expressed interest, but were unable to meet the january 2025 submission deadline. five pages of textual data were received and thematically analysed through a ‘process of recovering the theme or themes that are embodied and dramatised in the evolving meanings and imagery of the work’ (saven-baden & major 2013:440). in keeping with the thematic analysis method, repeated intuitive handling of the data allowed patterns of ideas and ‘a general sense of the information to emerge’ (saven-baden & major 2013:440). member checking was used to establish trustworthiness by sending a draft of the thematic analysis to the authors. minor adjustments were made after which a draft was sent to professor swartz, requesting his response to the perspectives of the contributing authors. acknowledging swartz’s contribution the textbook is only available as a hard copy paperback. the absence of an ebook version meant that there are no citation metrics from scopus, pubmed and ebscohost databases that include indexes of occupational therapy and occupational science journals. web of science (wos) and google scholar were used to identify the number of citations attributed to the textbook as a whole. the functionality of the wos (core collection) reported 93 citations. this figure is not a true reflection of citations, given that wos does not focus on occupational therapy research and does not index occupational science journals. google scholar reported 136 citations for the textbook as a whole. three themes with substantiating quotes emerged from the qualitative data namely ‘expanding potential’, ‘contagious curiosity’ and ‘igniting scholarship’. these themes describe author’s perspectives on the contribution of professor swartz to the textbook writing project. theme 1: expanding potential in this theme, contributors describe swartz’s ability to recognise and harvest latent academic potential: ‘when leslie meets people, he instantly recognises their potential and proceeds to establish a relationship on the basis that the person is already performing at the level that he believes them capable of – he then expects to be surprised by the person’s next act of brilliance; all this while downplaying his own abilities and the role he plays in supporting the person’s competence. when working with leslie, i always feel myself being shifted to within my zone of potential development (as per vygotsky). curiously, without experiencing performance anxiety, as one might expect, possibly because leslie already factored in my ability to succeed in the way he relates the me. leslie instils confidence when working with people as they transcend to their next challenge and level of performance, seemingly without setting any expectations.’ (author a, academic, occupational therapist) ‘he empowered and enabled each therapist to believe that they had a unique and important contribution to make to occupational therapy discourse and to believe in their ability to write in a professional, scientific manner.’ (author c, practitioner, occupational therapist) ‘leslie’s belief in our potential and the collaborative environment in which the book was conceptualised and developed provided the impetus for my colleagues and me to start realizing our capabilities.’ (author d, academic, occupational therapist) ‘contributing to the writing of this book was an innovative, reflective and recognition experience, resulting for me in further research in obtaining a phd.’ (author e, academic, occupational therapist) the writing project captured the: ‘shift in my thinking and practice from being an occupational therapist to becoming an occupational development practitioner and academic in disability studies. i had witnessed first-hand the marginalisation, oppression and poverty that persons with disabilities and their families experienced, and their struggles with accessing services and resources for health, education, livelihoods and social inclusion. working with disabled people’s organisations conscientised us to a different paradigm of community development and collaborative practice across sectors.’ (author h, academic, occupational therapist) ‘what is particularly remarkable about the book is that it is the first of its kind in south africa to present a collective voice of occupational therapists in academia, some of whom had just completed their master’s research and were only just beginning to contemplate doctoral research. the book is thus a great example of what can be achieved through collegial academic mentorship and collaboration, and a masterpiece in academic leadership.’ (author i, academic, occupational therapist) theme 2: contagious curiosity in this theme contributors highlight swartz’s inquiring mind, leadership and collegial attitude as fundamental to shared learning through the exchange of ideas: ‘what makes leslie truly exceptional is that he uses the same (humble) attitude when working with other professions. he instantly recognised the potential occupational science has in providing a foundation for trans-professional work and immersed himself in further development of these ideas.’ (author a, academic, occupational therapist) as a psychologist: ‘he just understood occupational therapy and had a wonderful way of working with all who were involved in bringing the book to fruition. he had the ability to engage, encourage and empower us on many different levels – from theory to practice.’ (author b, practitioner, occupational therapist) ‘leslie immersed himself in the beliefs, values, principles and methodologies of occupational therapy, coming to a comprehensive and insightful understanding of the profession and what it has to offer – most unusual for someone who is not a member of the profession.’ (author c, practitioner, occupational therapist) ‘despite my initial skepticism about having anything meaningful to say, leslie’s persuasive can-do attitude left no room for opting out. leslie’s insistence and his confidence in our abilities were undeniably compelling.’ (author d, academic, occupational therapist) ‘i remember leslie’s warm friendship, compassion, humility and very strong leadership in this process. he created a strong focus on getting the job done.’ (author e, academic, occupational therapist) ‘with remarkable intellectual curiosity, swartz ventured into learning about the concept of occupation as an innovative conceptual territory for examining the complexities of disability in african societies.’ (author f, academic, occupational therapist) ‘leslie was open to us questioning and challenging his assumptions about occupational therapy practice, and the experiences we had in working with disabled people’s organisations on the ground. professionals are used to holding positions of power. we wrote about shifts in power dynamics. the space the editors created allowed reflection on our own practice, how we were able to facilitate meaningful and sustained transformation in teaching, learning, research and how we engaged with disabled people, their families and communities.’ (author h, academic, occupational therapist) theme 3: igniting scholarship in this theme, contributors acknowledge the impact of the textbook on the profession and the role that swartz as co-editor played in making south african scholarship accessible to an international audience: ‘his leadership, his mentorship to others and the legacy of his work in this textbook had lasting influence and far-reaching scholarship impact and in shaping the professional discourse around disability and rehabilitation.’ (author b, practitioner, occupational therapist) ‘swartz inspired authors to foreground the tenets of an african professional identity by describing the realities of working in a context very different from the prevailing western occupational therapy discourse. he guided scholarship that positioned the profession in an alternate worldview that is focused on the collective, rather than the individual, and which is rooted in an appreciation of human diversity, interdependence and ubuntu.’ (author c, practitioner, occupational therapist) ‘i never imagined that we could collectively author a book. it made us realize that we, too, could contribute to the scholarship of our profession by offering an alternative perspective, paving the way for further academic opportunities.’ (author d, academic, occupational therapist) ‘watson and swartz were visionaries – the content of this book is still relevant today. sad to say that a lot of the challenges we experienced then still prevail … making me realize the importance of identifying metrics for measuring progress in our work as occupational therapists. i am still working on how best to do this.’ (author f, academic, occupational therapist) ‘swartz’s editorial partnership with watson encouraged authors to critique the dual academic concerns of practice methodology and professional epistemology when describing the impact of structural barriers on occupational participation from a policy perspective. documenting practice in this way created a useful reference for occupational therapy in other developing contexts.’ (author g, practitioner, occupational therapist) ‘the spaces that leslie and ruth created for critical reflection and writing enabled novice researchers to pair up with more experienced researchers. the collaborative writing process meant that we were supported in translating our practice into theoretical concepts aligned with international and national policies. the writing processes strengthened implementation practice and produced reading material for the undergraduate occupational therapy programme, including practice learning, as well as postgraduate courses.’ (author h, academic, occupational therapist) ‘the publication of transformation through occupation ten years after the first democratic elections that allowed the majority black population to vote for the first time in south africa carries great historical significance. it created a moment for the profession of occupational therapy to reflect on how it served the south african population under apartheid, deemed a crime against humanity by the 2002 rome statute of the international criminal court. the profession had the opportunity to reflect on whether it sufficiently inoculated itself against the excesses of a brutal oppressive regime or merely became complicit. this was important for the coming to being of south africa as a nation. as editors of the book, professor ruth watson and professor leslie swartz played a significant part in helping mainly new authors to reflect on this moment, the role of the profession, and their own contributions as practitioners and academics.’ (author i, academic, occupational therapist) ‘framing occupational therapy around occupation as a key focus of study and practice was crucial but equally so was the community-oriented approach to practice. it is this framing that enabled me as a budding researcher and author, to firmly locate my work with children and mothers living with hiv and aids, centred on intergenerational play and playfulness, within occupational therapy practice. this being groundbreaking work in scholarly terms, broadly, contributed to the visibility the book garnered internationally. i was also able to co-author a second chapter on spirituality in occupational therapy, another area of global interest then, and now.’ (author i, academic, occupational therapist) considering textbook impact as a psychologist and disability advocate swartz’s collaboration with an occupational therapy community of practice highlighted the academic and service-related benefits of inter-professional collaboration and transdisciplinary theorising. critical reflections on occupation-based practice at the time of textbook project raised awareness of the conceptual synergies between disability studies, occupational therapy and occupational science. all the chapters, in one way or another, incorporated aspects of the social model of disability, foregrounding the contribution of the profession to the development of an inclusive society (watson & swartz 2004). the passage of time since the textbook was published suggests that more work is needed to strengthen the disability studies-informed foundations of the profession that place emphasis on overcoming environmental barriers to participation (harrison et al. 2021). the recent occupational therapy practice framework: domain and process (4th ed.) (aota 2020:61) describes the disability advocacy role of the profession, including ‘efforts directed toward promoting occupational justice’ in working for broader social change. sheth et al. (2021), reflecting on progress towards the inclusion of disability studies in occupational therapy in the united states of america since 2005, report gradual shifts in practice that distinguish between ‘context-changing’ versus ‘person-fixing’ approaches in occupational therapy. they argue that the profession can benefit from a balance between structural-level analysis and personal-level analysis of the occupational issues confronting people with disability. by 2004, south african occupational therapy had already embraced this balance (watson & swartz 2004). similarly, critical disability studies literature reflects engagement with occupational science and occupational therapy theory, highlighting how privileging certain types of knowledge (e.g., how constructs such as ‘independence’ and ‘participation’ are defined) perpetuates epistemic injustices (desormeaux-moreau et al. 2024). an underlying tenet of the politicisation of disability is the idea that disability is created by society. researching and theorising human occupation and humans as occupational beings in their lived environments (brown et al. 2024) offers disability studies a unique angle from which to describe power structures at play that curtail human flourishing. response by swartz swartz’s words in response to the article were: i am of course delighted and grateful to read this piece. thank you very much indeed. transformation through occupation has turned out, by many metrics, to be the most successful book i have written or edited. i have been hugely influenced by the experience of working on this book, and i use occupational science and occupational justice principles in a lot of my work. i was indeed asked to help with the transition the occupational therapy team at uct were going through with the retirement of ruth watson (who remains a role model for me). what struck me when i met with the team was the worry that after ruth went, all that she and the team had built up would be lost or forgotten. in my memory, it was when i heard this said a few times that i suggested that we work on writing together – to create something lasting that others can use. what i saw in the team was a group of highly competent, exceptionally creative trend-setters in their field, but for many reasons (which i think relate to gender, being occupational therapists in a faculty in which medicine is much more prized as a discipline, and, crucially, being south africans working at population level in a field dominated by excellent clinical work in wealthier countries), not recording and sharing fully and forcefully what they were doing. for me, the work on this book was an intervention in the fields of epistemic exclusion and the politics of voice. these are key issues in many areas, including of course, disability studies in the majority world, and doing this book, for me, was part of the work i have done around epistemic exclusion on the basis of race, gender, disability, access to education, location (global north and global south), and so on. from the outside it seems to me that contributors to the book have gone on to unsettle taken-for-granted power relationships in global occupational therapy and occupational science – they have changed who speaks to whom and about what. this work in occupational therapy, for me, links to what we need to keep doing to change disability studies to reflect postcolonial realities. i am so lucky to have played a small part in what south african occupational therapists have achieved. (l. swatrz, pers. comm., 11 february 2025) conclusion at the root of this discussion is the implication of disability studies and occupational therapy having as their primary concern the things people have difficulty doing, with each field conceptualising their version of ‘difficulty doing things’ in different but complementary ways. mccoll (2021), writing about the shared concerns of disability studies and occupational therapy asks: so why have they historically resisted this opportunity? why have they tended to operate in isolation from one another, and to treat one another with distance and suspicion? why have they to date failed to recognise and rally around a sense of shared mission? (p. 9) watson and swartz and the team of authors illustrated the possibilities for a powerful conceptual and practical alliance between the academic disciplines of occupational therapy, occupational science and disability studies. in so doing, they opened vistas of possibilities for the profession locally, regionally and internationally to promote contextually responsive practices. it is time to celebrate what has already been achieved and to envisage new inter-professional and cross-disciplinary projects emanating from africa. acknowledgements the author would like to acknowledge the contributions of the chapter authors and their feedback on the first draft of the article. the technical assistance of roberto sass, the librarian at the faculty of health sciences, university of cape town, in the search for citations is also acknowledged. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution e.m.d. is the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability data are available from the author e.m.d., upon reasonable request. documents are stored in a password-secured digital file. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the author is responsible for this article’s results, findings, and content. references american occupational therapy association (aota), 2020, ‘occupational therapy practice framework: domain and process’, american journal of occupational therapy 74(suppl. 2), 7412410010. https://doi.org/10.5014/ajot.2020.74s2001 booi, m.h., dabula, x. & duncan, m., 2024, ‘promoting inclusive development in a rural community’, in l. ned, m.r. verlade, s. singh, l. swartz & k. soldatic (eds.), the routledge international handbook of disability and global health, pp. 410–445, routledge, oxon. brown, t., isbel, s., gustafsson, l., gutman, s., dirette, d.p., collins, b. et al. (eds), 2024, human occupation: contemporary concepts and lifespan perspectives, routledge, london. christiansen, c.h. & townsend, e.a. (eds), 2004, introduction to occupation-the art and science of living, pp. 329–358, pearson, upper saddle river, nj. desormeaux-moreau, m., collins, b., mahipaul, s., leblanc-omstead, s. & jarus, t., 2024, ‘critical disability studies perspectives on human occupation’, in t. brown, s. isbel, l. gustafsson, s. gutman, d.p. dirette, b. collins & t. barlott (eds.), human occupation: contemporary concepts and lifespan perspectives, pp. 206–226, routledge, london. harrison, e.a., sheth, a.j., kish, j., van puymbrouck, l.h., lee, d. & mahaffey, l., 2021, ‘disability studies and occupational therapy: renewing the call for change’, american journal of occupational therapy 75(4), 7504170010. https://doi.org/10.5014/ajot.2021.754002 hocking, c., 2017, ‘occupational justice as social justice: the moral claim for inclusion’, journal of occupational science 24(1), 29–42. https://doi.org/10.1080/14427591.2017.1294016 kielhofner, g., 2005, ‘rethinking disability and what to do about it: disability studies and its implications for occupational therapy’, american journal of occupational therapy 59(5), 487–496. https://doi.org/10.5014/ajot.59.5.487 mccoll, m.a., 2021, ‘what can occupational therapy & disability studies contribute to one another?’, canadian journal of occupational therapy 88(1), 4–11. https://doi.org/10.1177/00084174211003473 sakellariou, d. & pollard, n., 2016, occupational therapies without borders: integrating justice with practice, elsevier, london. saven-baden, m. & major, c.h., 2013, ‘working with data and findings’, in m. saven-baden & c.h. major (eds.), qualitative research: the essential guide to theory and practice, pp. 439–440, routledge, abingdon. sheth, a.j., kish, j., van puymbrouck, l.h., heffron, j.l., lee, d. & mahaffey, l., 2021, ‘“a legitimate place in the profession”: author reflections on the 2005 disability studies special issue’, the american journal of occupational therapy 74(4), 7504180005. https://doi.org/10.5014/ajot.2021.045294 stadnyk, r.l., townsend, e.a. & wilcock, a.a., 2010, ‘occupational justice’, in c.h. christiansen & e.a. townsend (eds.), introduction to occupation-the art and science of living, pp. 329–358, pearson, upper saddle river, nj. van bruggen, h., kantartzis, s. & pollard, n. (eds.), 2020, and a seed was planted: occupation-based approaches for social inclusion vol one: theoretical views and shifting perspectives, whiting and birch ltd., london. watson, r., 2004, ‘new horizons in occupational therapy’, in r. watson & l. swartz (eds.), transformation through occupation, pp. 3–19, whurr publishers, london. watson, r. & swartz, l., 2004, transformation through occupation, whurr publishing, london. yerxa, e., 2009, ‘an introduction to occupational science, a foundation for occupational therapy in the 21st century’, occupational therapy in health care 6(4), 1–17. https://doi.org/10.1080/j003v06n04_04 http://www.ajod.org open access african journal of disability issn: (online) 2226-7220, (print) 2223-9170 page 1 of 1 erratum read online: scan this qr code with your smart phone or mobile device to read online. authors: eva s. bazant1 elizabeth j. himelfarb hurwitz1 brenda n. onguti2 emma k. williams1 jamie h. noon3 cheryl a. xavier4 ferdiliza d.s. garcia5 anthony gichangi2 mohammed gabbow6 peter musakhi7 r. lee kirby8 affiliations: 1jhpiego, baltimore, united states 2jhpiego, nairobi, kenya 3noon design, cerrillos, united states 4private sector, matale, sri lanka 5college of allied medical professions, university of the philippines, manila, philippines 6national council for persons with disabilities, government of kenya, kenya 7ministry of east african community (eac), labour and social protection, government of kenya, kenya 8division of physical medicine & rehabilitation, dalhousie university, canada corresponding author: eva bazant, eva.bazant@jhpiego.org date: published: 13 dec. 2017 in the version of this article initially published, a sentence which appeared in the abstract needs to be corrected. the sentence reads ‘conclusion: select services that were associated with some better wheelchair use outcomes and should be emphasised in service delivery’ and should read ‘conclusion: select services were associated with some better wheelchair use outcomes and should be emphasised in service delivery.’ this correction does not alter the study’s findings of significance or overall interpretation of the study results. the publisher apologises for any inconvenience caused. erratum: wheelchair services and use outcomes: a cross-sectional survey in kenya and the philippines read online: scan this qr code with your smart phone or mobile device to read online. how to cite this article: bazant, e.s., himelfarb hurwitz, e.j., onguti, b.n., williams, e.k., noon, j.n., xavier, c.a., garcia, f.d.s., gichangi, a., gabbow, m., musakhi, p. & kirby, r.l., 2017, ‘erratum: wheelchair services and use outcomes: a cross-sectional survey in kenya and the philippines’, african journal of disability 6(0), a468. https://doi.org/10.4102/ajod.v6i0.468 copyright: © 2017. the authors. licensee: aosis. this work is licensed under the creative commons attribution license. note: doi of original article: https://doi.org/10.4102/ajod.v6i0.318 http://www.ajod.org http://orcid.org/0000-0002-1212-8410 http://orcid.org/0000-0002-7495-8946 http://orcid.org/0000-0001-8395-0439 http://orcid.org/0000-0001-9305-5374 http://orcid.org/0000-0002-0005-1209 mailto:eva.bazant@jhpiego.org http://crossmark.crossref.org/dialog/?doi=10.4102/ajod.v6i0.468=pdf&date_stamp=2016-12-13 https://doi.org/10.4102/ajod.v6i0.468 https://doi.org/10.4102/ajod.v6i0.318 abstract introduction humanising disability studies research methods and design results discussion conclusion acknowledgements references about the author(s) michelle botha division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa chioma ohajunwa division of disability and rehabilitation studies, department of global health, faculty of medicine and health sciences, stellenbosch university, stellenbosch, south africa africa centre for hiv and aids management, faculty of economic and management sciences, stellenbosch university, stellenbosch, south africa citation botha, m. & ohajunwa, c., 2024, ‘seeing the human behind the research: strengthening emerging african disability researchers’, african journal of disability 13(0), a1494. https://doi.org/10.4102/ajod.v13i0.1494 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa,’ under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research seeing the human behind the research: strengthening emerging african disability researchers michelle botha, chioma ohajunwa received: 05 june 2024; accepted: 19 july 2024; published: 29 aug. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: a pre-conference workshop that investigated the experiences and needs of phd candidates and early career researchers in disability studies in africa was held as part of the proceedings of the african network for evidence to action in disability (afrinead) 7th conference in november 2023. objectives: to determine how the existing structures in afriinead can be leveraged to support emerging african disability researchers. this article documents this event and summarises the key findings from the discussions that took place. method: the workshop included presentations from leading scholars in health professions education, panel discussions with phd candidates and early career researchers, and small group discussions on what is needed to support emerging researchers. results: disability studies was positioned by participants as not only an academic exercise but also a deeply personal pursuit, requiring introspection and conscientisation, with which they felt they needed support. there are also specific ethical concerns related to doing research work with persons with disabilities, which need to be prioritised in postgraduate education in disability studies. the needs identified by participants are summarised as: (1) mentorship, (2) networking, and (3) funding. conclusion: we suggest that the development of african disability scholars and scholarship requires an african ethical approach, which prioritises humanity, community and reciprocity. contribution: african disability studies scholars are well-placed to disrupt ableism in academic, medical and social spheres, as well as hierarchies within academia, which limit development, mutual growth and respect. keywords: disability studies; higher education; social justice; conscientisation; african ethic. introduction in recent decades, there has been increasing recognition that people with disabilities face particular challenges to access, inclusion and participation in social, economic, political and cultural spheres and that, consequently, a disability-specific focus is required in development intervention planning and implementation (grech 2009). this move towards greater disability recognition is in no small part because of the persistent activism of movements of people with disabilities, both national and transnational (conejo 2013; grech 2009). the united nations convention on the rights of persons with disabilities (uncrpd), which sets a global precedent for the inclusion of people with disabilities in all spheres of society, was, itself, born out of activism of people with disabilities (conejo 2013; frohmader & meekosha 2012). the uncrpd positions inclusion and participation in such spheres as healthcare, education, employment and law, as well as access to public services and resources, information and communication, and spaces, as inalienable human rights of people with disabilities, representing a decisive shift away from a charitable approach to disability, where inclusion relies on the arbitrary goodwill and altruism of individuals without disability (mcclain-nhlapo 2010). moreover, the well-known disability rights movement slogan, ‘nothing about us without us’, asserts that people with disabilities are not only rights-bearers but also knowledge-bearers and agents with capacity to make autonomous decisions and effect change (blackmore & hodgkins 2012; charlton 1998). despite these important shifts in global disability discourse and legislation, increasing attention has been drawn to the fact that development agendas, programmes and evaluations towards disability inclusion are dominated by theories, models and research from the global north (grech 2009; meekosha 2011; ned 2022). these critical perspectives call for the recognition of multilayered dynamics of epistemic and political power, between individuals with and without disabilities, resourced and under-resourced contexts, and between other intersecting axes of privilege and oppression operating in specific localities, concerning race, ethnicity and gender, among others (frohmader & meekosha 2012; ned 2022). these dynamics are particularly necessary to understand in relation to disability studies as a distinct discipline concerned with tracing, critiquing, and addressing the social oppression of people with disabilities (grech 2015; ned 2022). disability studies initially emerged out of activist movements in the united kingdom and united states, and has, at its foundation, a reconceptualisation of disability as, not only an individual and embodied phenomenon requiring specialist medical interventions and care but also a socio-cultural construct requiring collective political action to promote equality, access and inclusion (oliver 2004; shakespeare 2014). while scholars in the global south do tend to recognise the strides made through this development of disability studies, particularly related to the development of a human rights approach to disability, they register concern that its foundational concepts are often uncritically exported to the global south, where they may not be either relevant or appropriate (meekosha 2011; ned 2022). northern disability theories, models and research, they contend, tend to assume that the experiences, values and needs of people with disabilities are universal, and are, therefore, out of step with what is often at stake for people with disabilities in the global south, that is, their very survival in contexts of widespread material deprivation (grech 2015; meekosha 2011). it is obvious that in order for states to promote and implement disability-inclusive programmes and practices, contextually relevant research is required (grech 2009; schneider & suich 2021). this must encompass work that determines disability prevalence, type and severity, the circumstances, needs and lived experience of persons with disabilities, their families, caregivers and communities, as well as the implementation, outcomes and efficacy of policies, programmes and practices to promote disability inclusion in various spheres. there is, therefore, a need to develop disability-aware and inclusive research, and, necessarily, disability-aware researchers, across contexts and academic disciplines such as in education, engineering, health sciences, humanities, law, social sciences, technology, and more. however, this is arguably not possible without the development of robust, contextually focused and appropriate, yet regionally and internationally collaborative disability studies, where context-specific and relevant disability conceptualisations and theories are able to be explored and developed (ned 2022; ohajunwa & sefotho 2024). in africa, disability studies continue to steadily gain traction as a legitimate discipline in its own right, evidenced by the growth and development of this publication over recent years, as well as the development of dedicated academic programmes at various universities. scholars have suggested that the development of disability studies in and for africa, must involve the incorporation of indigenous knowledge on well-being, health, humanity and disability, and recognition of the disabling impact and epistemic injustice of colonial histories (ned 2022; ohajunwa, mji & kalenga 2022). it must also recognise the ways in which disability complicates and blurs identity boundaries, scrambling categories of power and oppression in ways that require critical intersectional analysis (botha & watermeyer 2021; chiwandire & vincent 2019). more than the development of concepts, theories and approaches, a robust, decolonised, context-specific, interdisciplinary and, consequently, transformative disability studies in africa require the nurturing and strengthening of researchers, both with and without disabilities, across the continent. with this background established, we report here on some ideas, which emerged from a workshop held with african phd candidates and early career researchers in disability studies entitled: ‘towards a community of practice: strengthening emerging researchers in disability studies in africa’. the workshop formed part of the pre-conference activities of the 7th african network for evidence to action in disability (afrinead) conference held in cape town, south africa in november–december 2023. african network for evidence to action in disability is a pan-african network of scholars, practitioners and activists in the field of disability who are focused on translating research evidence into action (both policy and practice) in order to promote disability inclusion across the continent. the network was founded in 2007 and its activities culminated in a conference, which is held every second year. in this article, we (the workshop organisers and facilitators) offer our reflections on the event and present some overarching ideas on what might be needed to strengthen disability studies and research in africa based on our learning from the event and post-event debriefing. we contextualise this pre-conference event, including a brief description of the workshop rationale and activities. we also describe elements of an african research ethic with which we frame the further discussion of our impressions of the workshop outcomes and recommendations for future work. before this, we briefly justify the need for a ‘humanising’ approach in disability studies, particularly in apprehending intersecting subject positions of both researchers and research participants in africa. humanising disability studies disability studies has its roots in collective political action against discrimination and is centred on creating just, inclusive, caring and diverse societies (goodley, hughes & davis 2012; ned 2022). it requires researchers to think critically about the power-knowledge, which coalesces around disability in various spheres, which necessarily involves apprehending the lived experiences of people with disabilities (which are likely to include inequality and exclusion), as well as confronting societal attitudes and responses towards disability. freire (1972) first developed the concept of ‘conscientisation’, which has increasingly been drawn upon as a beneficial influence on research practice in disability studies. conscientisation is a process whereby ‘thinking subjects’ recognise themselves as operating in relationship with the world and, thus, understand that both scholarship and professional practice require a reflexive approach to issues of power, privilege and oppression (kumagai & lypson 2009). this process, essential for the promotion of social justice, can be encouraged through education, which intentionally prioritises the development of ‘critical consciousness’ as an outcome (kumagai & lypson 2009; van schalkwyk & blitz 2024). this approach holds particular value for medical, health and rehabilitation professionals who find themselves investigating in the disability field, as relationships between people with disabilities and these professionals have been historically laden with unequal power dynamics, which have often been obscured by medical and charitable model disability theorising, where people with disabilities are seldom recognised as autonomous agents and knowledge-bearers (botha & watermeyer 2022; ebrahim et al. 2020; oliver 2004). in contrast, the development of critical consciousness involves both thinking and a connection to feelings, and leads ultimately to ‘engaged discourse, collaborative problem-solving, and a “rehumanisation” of human relationships’ (kumagai & lypson 2009:783). this holds transformative potential, particularly for health and rehabilitation services (ebrahim et al. 2020). in addition, there is significance for people with disabilities (both those within and outside of formal academia), and those who are parents, caregivers and loved ones of persons with disabilities, to the development of this critical consciousness as this relates to both individual and collective empowerment. as charlton (1998:192) asserts of the recognition in disability studies of disability as an issue of social oppression: ‘… to name disability as social oppression is not the defeated wailings of victims, but the clarion call of social change’. there is resonance here too with other movements to address injustice, such as that based upon gendered, racialised and colonial oppression, which have developed critical pedagogies including critical feminism, critical race theory and decolonial studies as a means to promote critical consciousness and effect social change (grech 2012; hook 2012; tremain 2017). recognising this resonance is particularly important for the development of disability studies in africa, which must necessarily deal with intersecting forms of oppression. there is much to be said here about a decolonial imperative, not only in terms of disability studies but also the academy more broadly, as scholars have argued (grech 2012, 2015; ndlovu-gatsheni 2014; ned 2022). african ways of knowing, doing and being must be central to disability studies teaching and scholarship in africa, as well as the interventions and practices, which flow from this (ned 2022; ohajunwa & sefotho 2024). grech (2015) asserts that the decolonial process in disability studies, as well as in other spaces, must involve an intentional recognition of epistemologies and practices from the global south, and redistribution of power and resources. the decolonial process must also be accepted as messy and continuous and must hold at its centre the recognition of histories of decolonial resistance in particular contexts. moreover, grech (2015) asserts that ‘debates and alliances’ are vital to the decolonial project and that within transnational collaborations (including between global south and global north): [w]e may paradoxically start to challenge the colonial discourse of othering and difference, to make fusions productive and, most importantly, non-oppressive, without ever losing focus of the project of eradicating neocolonisation as a historical project transcending spatial and temporal boundaries. (p. 18) in african disability studies, therefore, there are complicated dynamics of power and privilege, compounded, and in some ways scrambled, by disability as a cross-cutting experience (ohajunwa et al. 2022). it is necessary, therefore, to pay careful attention to the politics of voice within disability studies, the foregrounding of disability standpoint perspectives, the capacitation of scholars with disability, and the dismantling of disabling barriers within the academy (chiwandire & vincent 2019; dolmage 2017). research methods and design the pre-conference workshop was held on wednesday, 29 november 2023. this event aimed to create a space for emerging disability researchers in africa (including phd candidates, phd graduates and post-doctoral fellows) to share knowledge and experiences on the challenges and opportunities that they face as disability researchers in this context. the event organisers were interested to explore the following questions through this event: what is needed to strengthen disability theorising for africa? what is needed to develop disability research ethics for africa? what is needed to support the translation of disability research evidence into action and practice in africa? how can the phd and post-phd experience be made more meaningful for disability scholars, researchers, practitioners and activists in africa? these questions and the rationale for the workshop were developed through several long-form discussions between the event facilitators (the authors of this article) and the chairperson of the afrinead, who commissioned the workshop event, and other board members of afrinead. the event was envisioned as a means to explore how afrinead, as a unique network of scholars, practitioners and activists, can play a role in supporting emerging and early career researchers in the field. this might involve leveraging existing structures of the network and/or looking to future projects. fundamental to this first event, approached as a sort of ‘fact finding’ mission, and central to this team’s strategising on any subsequent activities, is the recognition that disability studies in and for africa must necessarily be framed by an african research ethic. workshop structure the event was structured as a dialogue where the approximately 40 online and in-person attendees were encouraged to engage with a keynote presentation, panel discussions, and small group discussions. the deputy vice-chancellor for transformation, student affairs and social responsiveness at the university of cape town presented the keynote address. she delivered a strong call to action for health professionals and those involved in health and disability-related research to critically question the dynamics of power-knowledge in their disciplines so as to contribute to dismantling oppression of many kinds in africa, setting the tone for the discussions that followed. the bulk of the workshop was taken up with two panel discussions: firstly, with current phd candidates and secondly with early career researchers, including post-doctoral fellows and junior academic staff. these discussions focused on experiences of challenges and opportunities in navigating doctoral study and the post-doctoral landscape in disability research. panel questions included the following: why did you feel it was important for you to pursue a doctoral degree? what two lessons have you learnt from your journey that you feel are important for those currently pursuing or intending to pursue a doctoral degree? how equipped did you feel after completing your doctoral degree to take the next steps in your career? are there skills, competencies, and forms of support that you feel are needed to assist people in navigating the early career stage? the workshop concluded with a time for small group discussions and feedback on the question: what is needed to build capacity for disability researchers in africa? workshop attendees included researchers from contexts across africa, those with and without disabilities, and from various backgrounds including health professions, social sciences and humanities, law and politics, and education, as well as the disability not-for-profit and activist sectors. it is important to state here that this article, rather than a piece of formal empirical research, is a reflection of the authors’ lessons from the workshop and the themes, which emerged from the discussions held. this represents an effort to preserve these ideas and feed into the development of future interventions to support emerging and early career researchers through the structures of afrinead. the themes presented in the following section are drawn from the notes taken by both facilitators during the workshop, our post-workshop debriefing discussion, as well as notes taken by participants during the workshop. before turning to discuss these findings, we first provide some background to the conceptual framing of this workshop event, which was based on the recognition of the need to develop and promote an african research ethic in disability studies. crucially, this includes the transformative potential of problematising dominant, western academic hierarchies and power. there is resonance here too with a feminist research ethic, which has problematised dominant, patriarchal constructions of ‘legitimate knowledge’ towards greater emancipatory research and ‘epistemic justice’ (fricker 2007; oakley 1998). similarly, we argue for an understanding and implementation of research that is informed by an african ethical worldview. the ‘northernness of disability theory’ (meekosha 2008:670) has influenced research within the african context predominantly. we present this african ethical moral framework below as a response to this dominant imposition of ideologies of research from the global north, leaning towards a more syncretic approach and epistemic affirmations. an african research ethic in this article, africa refers to the sub-saharan geographical area with more than 3000 tribes with different sub-cultures (abur & mugumbate 2022), from the nubian desert to the cape of good hope and from senegal to zanzibar (nabudere 2005; ramose 2002 cited in abur & mugumbate 2022). while african researchers, here, refer to individuals from the african continent, who currently may live within the continent or who may be visiting other contexts, while conducting academic research on issues related to african contexts, there are varied ontology(ies) and epistemology(ies) that exist within the african continent (masolo 2019: metz 2020; ned 2022; ohajunwa & sefotho 2024). however, one prevalent theme connecting these varied understandings is the situating of humanity and human connection as central within these discourses. a key concept undergirding this positioning is the african indigenous concept of ubuntu, which embodies humanity, community, fairness, equity, reciprocity, among others. this concept can be found within almost every african community in different terms, but with similar meanings (abur & mugumbate 2022). within the african indigenous framework, there is a holistic relationship that exists between the human, other humans, and the physical and spiritual environment around them. the concept of ubuntu carries this relationship within a two-pronged approach to human engagement (ohajunwa et al. 2022). as regards the first side of the approach, ubuntu carries a philosophical and moral mandate to altruism and the greater good to benefit all. this includes the manner and process of knowledge generation, validation, and dissemination, how we do research to benefit society, and not deprive society. ubuntu calls for the realisation of a higher ethical reason and higher impact for conducting research. the second side of the twin approach held within the concept of ubuntu is aligned to the practicalities and strategies of expressing this higher altruism discussed above. not only does ubuntu advocate an altruism that should influence research implementation but also provides an ethic of care that addresses the practical considerations of research implementation within the african context. this should occur across all research endeavours, and particularly within disability-related research, which is the focus of this article. here, the researchers, people with disabilities, funders, various institutions, government, communities, and the physical environment where the research is conducted are recognised as part of this complex ecology of knowledge. therefore, according to ubuntu, none should be ignored or reduced within the research engagement. in a bid to avoid any expression of maleficence within this ecology, the practical issues of research and the positioning of the human component of this engagement should be properly considered and planned for. this was a strong theme that emanated from the workshop. emerging and early career researchers require an ethic of care that can sustain rigorous research, as well as a funding and institutional attitude and process that facilitates collaboration by humanising them, seeing their needs, and valuing their voices. in this way, a reciprocal research relationship is built with intentionality across individuals and institutions within the african context, sharing resources and supporting the other, particularly within the field of disability-related research. this is what we refer to as an african research ethic. conceptualising research in this way will, hopefully, assist us to establish sites of knowledge and practice that follows this two-pronged approach within ubuntu, where knowledge is validated and esteemed, but the bearer of knowledge is not perceived as dispensable, but equally valued. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. results the overarching theme that emerged from the discussion can be summarised as the need to ‘see the human behind the research’ – hence its use as the title of this article. this phrase holds a useful dual meaning. firstly, it captures the need for researchers to ‘see the human’ behind and within their own work – that is, to make decisive efforts to dismantle the historical positioning of people with disabilities as mere ‘objects of study’, rather than active agents and partners in knowledge production (grech 2015; kahonde 2023). this focus on safeguarding dignity and agency also aligns with the specifics of what it means to enact ethical research in disability studies in africa, which requires the recognition and practising of the values of mutual respect, reciprocity and mutually reinforcing humanness (kahonde 2023; keikelame 2018). secondly, ‘seeing the human behind the research’ also draws attention to the researcher herself, as not only involved in producing knowledge as a scholarly product, but as a human being undergoing a, at times, challenging process of personal development related to political and social consciousness (kumagai & lypson 2009). this section unpacks this dual imperative towards greater ‘humanity’ in disability studies scholarship. we then turn to the suggestions that workshop participants made for how this can be supported in practical terms, and how disability researchers and research can be strengthened in africa. seeing the human behind the research for workshop participants, their work in disability studies was not a process devoid of emotion or personal investment. indeed, participants shared that their discovery, interest in and entrance into the discipline of disability studies had deep personal and subjective origins. rather than a response to mere scholarly interest, participants described being drawn into disability studies as a response to particular experiences and the emotions these produced. they used phrases such as: ‘i saw…’ and ‘i felt…’ when explaining the background and rationale to the research they went on to pursue. this appears to be similar for researchers both with and without disabilities, whether with backgrounds as health professionals, parents and caregivers, activists, and more. the profound impact that encountering disability studies as a distinct discipline can have is illustrated in the following quotation, where a scholar with disability describes her first encounter with disability studies work and its impact as she negotiated her own identity with disability: at the time, although doing courses in gender studies and reading a lot of both western and african feminists, i had not yet realised that disability was something that could be theorised beyond the mere fact of a body that did not work properly. i started with sally french’s can you see the rainbow? (1993). i must have read it at least five or six times over. i was amazed that a complete stranger could write so profoundly about my own experience. i realized that what i had been doing throughout my teens and into my early twenties was not unique to me. it was called ‘passing’ and i was a seasoned pro. (botha & watermeyer 2021:8) similarly, the workshop participants described being involved in a process not only of scholarly discovery, but also of developing personal and political consciousness, with which they needed support from supervisors, other more senior academic staff, and peers. the sense from these participants is that, when pursuing disability studies at degree or early career stage, there is ‘the work’, referring to the process of developing academic competencies such as literature searching and reviewing, research design and implementation, and academic writing, and then there is ‘the work’ (articulated with more emphasis). this ‘work’ refers to the processes of personal reflexivity – grappling with self-concept and identity, the operation of injustice, as well as one’s own complicity in, and role to disrupt, mechanisms of oppression. this is what is encompassed in the concept, ‘conscientisation’, coined by freire (1972), as described earlier. in addition, participants described having to grapple with not only power dynamics between researchers and the communities with whom they engage but also the power-knowledge landscape, which continues to be dominated by theories, methods and practices from the global north, within which researchers must navigate as scholars and researchers in and from africa (grech 2015). in this regard, a strong theme that emerged during the workshop discussions pertained to the particularities of being a researcher from africa and the sense that individuals might carry some measure of internalised oppression influencing their sense of value and potential. participants (both with and without disabilities) described the sense that they, like the persons with disabilities on whom their research centres, needed to experience ‘liberation’, in the epistemic sense. this was expressed in terms of the need to feel that they had ‘permission to speak’. beyond decolonising epistemologies and methodologies, workshop participants also expressed the need to embrace a decolonial approach to academic relationships, drawing on ubuntu ethics. in this, participants assert that there is a need to foster greater mutual respect, problematise rigid academic hierarchies and promote a more ‘developmental’ approach to scholarship, which holds humanity at its centre. illustrating this, a participant described the benefit to their doctoral research process of working with a supervisor who, to use their words, ‘had ubuntu in him’. this refers to the sense of being seen, respected and appreciated as a ‘whole person’ within the supervision relationship. alongside african scholars’ negotiation of a neocolonial power-knowledge landscape in academia and inextricably intertwined with this, is the need for scholars with disability to navigate ableist power-knowledge mechanisms that silence and exclude – what has been termed ‘academic ableism’ (dolmage 2017). a participant at the workshop referred to this, particularly as it interacts with disability studies, as the ‘elephant in the room’ – suggesting that the discipline might be more comfortable to look outward to injustice than it is to look inward. this is not to say that the perspectives and expertise of people without disabilities (swartz 2010), or the exploration of intersecting forms of violence, exclusion and oppression (bell 2012; erevelles & minear 2010) should not be welcome; in fact, these are vital to the development of a robust discipline. what does it imply, although, is the need for careful ethical attention in disability studies, both outward and inward facing, to the particular challenges that scholars with disability are likely to face (chiwandire & vincent 2019). here again, the ubuntu ethic holds potential, capable of containing diverse perspectives, positions, approaches, and the debates that might emanate from these within a framework of mutual respect and humanness. in addition, the community of practice approach for disability studies described in lawthom and chataika (2012), which prioritises individual and community growth and development through the sharing of knowledge and experiences within a group of common interest, warrants more exploration in terms of what it might offer to disability studies in africa and particularly these complexities of power, voice and epistemic justice (fricker 2007). what is needed to strengthen disability studies researchers in africa? the given discussion sheds light on the at times challenging process that disability studies researchers (both with and without disabilities) are navigating. this concerns not only the activities of academic development but also a more internal process of consientisation, including apprehending issues of epistemic injustice (fricker 2007), related to both the communities in which they are operating, and their own positions within the landscape of academic hierarchies. workshop participants expressed several ways in which they needed to be supported in negotiating this tricky terrain, which in many ways align with the characteristics that define communities of practice (lawthom & chataiga 2012). we share these next, before turning to some final recommendations, with a particular focus on the role of afrinead. mentorship there was a sense that far greater interpersonal support was needed in the doctoral and early career phases, particularly given the complexity described here. for participants, this included mentorship from their supervisors, opportunities to engage with other academic staff and focused and intentional engagements with their peers. in the spirit of communities of practice, these mentorship relationships and spaces are envisioned as one of reciprocal learning (keikelame 2018; lawthom & chitaiga 2012). this mentorship must focus on supporting researchers through the process of critical consciousness development, which they are likely to undergo in their journey with disability studies scholarship. the sense from participants is that mentorship at several levels would combat anxieties and isolation, which accompany this deeply personal, internal work. mentorship is also necessary to provide support with developing the competencies required in academic work, with which some participants felt they were not sufficiently prepared when moving into doctoral study. for instance, a participant described the sense that when starting a doctoral degree, the expectation from supervisors and other academic staff seems to be that ‘you already know what to do’. given that disability studies attract people from a variety of backgrounds, including disability rights activism, direct service provision in the not-for-profit sector, health and rehabilitation professions, and more, it is necessary to ensure that candidates are prepared, whether to make the transition back into academia after a significant break, or to move from clinical disciplines into the more social sciences-oriented field of disability studies. in addition, the very particular ethical considerations related to doing research with people with disabilities were identified during the workshop as an area requiring development, and with which participants felt they needed guidance. in particular, the need to carefully consider participation of people with disabilities within the research process, as well as how best to translate and disseminate research findings to benefit communities were mentioned. a third area of concern where participants felt that more intentional mentorship was required was the development of a clear ‘exit plan’ with their supervisors. similar to the above-mentioned statement, participants expressed that it was simply assumed that they knew how academic hierarchies, advancement and career planning and development work. instead, this was an area where they felt the need for more information, guidance and support. again, it was felt that both peer-to-peer and supervision mentorship in these more practical areas of academic development and advancement would assist greatly to combatting anxiety and isolation, as a participant put it, to offer ‘hope’. it was felt that formalised pre-doctoral support would also aid these processes of scholarly and personal development, but that there are funding implications to this which would need to be negotiated. pre-doctoral training is increasingly recognised as an important ‘bridging’ stage where doctoral candidates are equipped with information, opportunities to begin to develop requisite skills and competencies, and time to build rapport with a supervisor and network within the university (chan 2008). furthermore, research has suggested, a key time to build resilience and to delve into a reflexive process concerning the researcher’s role and positions of power and privilege (chan 2008; mckenzie, kent & valero 2022). networking participants recognised the importance of developing strong networks across disciplines and geographies. it was felt that pan-african networks were important to maintain a sense of the work that is happening in disability studies on the continent, particularly to avoid duplication and encourage collaboration. it was also felt that these networks would assist in the translation and dissemination of research findings into action for communities, connected to the concern raised here. moreover, it has been suggested that collaboration, particularly between the global north and global south, is important in promoting the decolonial project in disability studies – encouraging the greater global recognition of voices, knowledge and approaches emanating from the global south, and capacitating researchers and institutions through partnership (grech 2015). there was a sense in the workshop discussions that disability studies researchers, regardless of context, shared a connection rooted in the belief in the liberatory and transformative goals of the discipline, as a participant expressed, ‘we speak the same language’. however, they were also clear that this connection, and resulting collaboration, must not obscure or undermine context-specific realities and concerns. there was also the sense of a deeply felt responsibility of disability studies researchers to be active within their background disciplines to dismantle oppressive concepts and practices and to advocate for disability inclusion and participation. this difficult work, which might require people to occupy the role of ‘disrupter’, cannot be performed in isolation and would be strengthened through both pan-african and global disability studies and research networks. funding unsurprisingly, a key concern raised during the workshop discussions, and an area where participants felt they needed more support, was funding. participants referred not only to funding through bursaries, scholarships and research grants but also through being afforded opportunities to earn through teaching, supervising, and other work opportunities within the departments in which they are registered. in these discussions on funding, layered socio-economic vulnerabilities, specific to under-resourced contexts in the global south, come into view. for instance, a participant described their situation as ‘living from hand to mouth’. there are also specific challenges to entering and remaining in tertiary education for students with disabilities, which include insufficient designated funding mechanisms to support this group (chiwandire & vincent 2019). a further concern regarding funding relates to the agenda setting power that funding agencies hold. this is particularly relevant to partnerships with funders in the global north, who may be out of touch with context-specific norms, circumstances, and needs (grech 2009). aligned with the sentiments of participants already shared, the workshop discussions also called for the decolonisation of the funding landscape, referring in particular to the need for local agendas to lead the way in the development of funding priorities, grant allocations, and research and/or intervention planning and implementation (grech 2009). these three needs, namely: (1) mentorship, (2) networking, and (3) funding are interconnected and reliant on each other in various ways. for instance, negotiating the complexities of the funding landscape can be facilitated through mentorship and networking. similarly, networking and mentoring opportunities can be facilitated through designated funding. our suggestion, emanating from this workshop event, is that these should be viewed as the necessary pillars of doctoral and early career support to strengthen researchers and research in disability studies in africa. these support pillars, and activities to develop them, should equally be informed by the overarching principles related to social justice and humanity discussed earlier. african network for evidence to action in disability has a significant role to play here. discussion in the interest of a sustainable research engagement that takes note of the unique challenges experienced within disability-related research and researchers within the african context, there must be intentionality within the approaches utilised by individuals and institutions. african network for evidence to action in disability, by virtue of its position as a network of institutions, non-governmental organisations (ngos), and advocates, should continue to create spaces where researchers and advocates can meet with each other and network. the seventh afrinead pre-conference was aimed at this, bringing in academics to talk across disciplines and further develop transdisciplinary discourse related to disability research. the afrinead has country working groups, with affiliations across universities and civil society organisations across the continent. the country-working groups should be strategically involved in targeted advocacy to enhance collaborative research that benefits and supports both the growth and retainment of early career researchers within our institutions across the continent. higher education institutions in africa must recognise the need to support career pathways for phd and post-doctoral fellows, by exploring various ways and means to support their sustained contribution to the academic institutions. a decolonisation of the mind and the research processes, where collaborators from the global north are often more sought after than africa-wide collaborators must be addressed. a more developmental approach must be used within institutions to mentor emerging and early career academics, respecting and valuing the unique contributions that they make as the future of academia within the continent. the government and their agents, who often negotiate with funders, must begin to bring the voices of early career and emerging academics to the negotiating table. this is especially critical when related to disability research, where there has been historic marginalisation and imposition of northern ideologies of the disability experience within research in africa. this imposition is often spurred on by international funders. conclusion in this article, we presented the outcomes of a pre-conference workshop held as part of the 7th afrinead conference, focusing on the experiences and needs of phd candidates and early career researchers in disability studies in africa. the pre-conference was aimed at engaging with these academics to understand their unique positioning and experiences. these academics face unique challenges linked to a shared history of oppression and ongoing coloniality that impact their experiences as academics, and the future of academia in africa. the dominant understanding of disability studies itself, as a discipline, emerges from northern thought, and mandate from funders, further subjugate the realities for african disability studies researchers. participants emphasised the need for support and regulation in terms of showing appropriate sensitivity and conscientisation when it comes to disability research within the continent. the three main areas of challenge highlighted by participants are mentoring, networking and funding. these three areas, although implemented through various systems, reflect a thread of human engagement and support, that is purported by ubuntu. as advocated by ubuntu, the challenges of retainment and employment by higher academic institutions, decolonising the research process by focusing on contextually relevant and sustainable frameworks, the provision of mentoring in a respectful manner that values rather than subjugate the other, advocacy and fair negotiations with funders who often influence policy and research directives, can all be done while centring the humanity of the researcher within these multiple processes of disability research engagement. acknowledgements the authors would like to thank prof. gubela mji for her guidance and support in the planning of the workshop event described in this article. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions m.b. organised and facilitated the workshop on which this article reports, conceptualised and wrote the article. she reviewed and edited the contributions of the second author to the article. c.o. organised and facilitated the workshop on which this article reports, conceptualised and wrote the article. she reviewed and edited the contributions of the first author to the article. funding information the workshop on which this article reports was made possible by the african network for evidence to action in disability (afrinead). data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it 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university of south africa, pretoria, south africa citation zongozzi, j.n. & ngubane, s.a., 2025, ‘equitable access to digital higher education for students with disabilities in south africa’, african journal of disability 14(0), a1525. https://doi.org/10.4102/ajod.v14i0.1525 original research equitable access to digital higher education for students with disabilities in south africa johannes n. zongozzi, sindile a. ngubane received: 12 july 2024; accepted: 14 oct. 2024; published: 28 feb. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the growing reliance on digital learning in south africa, partly because of the emergence of the coronavirus disease 2019 (covid-19) and 4ir technologies, risks excluding students with disabilities (swds) if measures to adequately support them are not in place. objectives: the study aims to identify gaps in knowledge, policies, practices and resources, which could impede the full engagement of swds. this article utilises the conceptual framework for inclusive digital learning, which comprises three categories of concepts related to inclusive digital learning: (1) defining attributes, (2) antecedents (necessary conditions) and (3) consequences (results). the framework is applied to synthesise the literature, determine the framework’s efficacy, feasibility, and suitability, and demonstrate its value and utility in the actual implementation of inclusive and high-quality higher education for swds in south africa during this era of digital learning. method: this study reviewed 22 articles (2020–2023) on disabilities, higher education, and digital learning identified through google scholar using boolean operators. results: the study reveals significant gaps in south african higher education research on institutional policies related to digital access, capacity development, and disability inclusion in teaching and curriculum design. conclusion: the challenges facing swds and the existing research gaps imply that most higher education institutions lack the theoretical knowledge, policies, resources, infrastructure and staff capacity to support swds. contribution: this study exposes gaps in the literature and recommends further research on higher education policies and to establish the potential for policy reform to better support swds in the current era of digital learning. keywords: higher education; accessible education; digital learning; students with disabilities; south africa. introduction background the global phenomenon of systematically excluding people with disabilities (pwds) from all aspects of the economy has elicited responses from various stakeholders (ongolo 2018; sipuka 2019; sipuka & ngubane 2022). several global and regional treaties, such as the united nations convention for the rights of persons with disabilities (uncrpd), along with national legislation, highlight the importance of taking proactive measures to address these inequalities, which are expected to worsen because of the increasing dependence on fourth industrial revolution (4ir) technologies. the requirement for pwds to have access to quality education as a prerequisite for economic participation is explicitly stated in international agreements such as the uncrpd and the un convention on human rights (united nations 2008). in response to this urgent situation, the protocol to the african charter on human and peoples’ rights on the rights of persons with disabilities in africa (african union 2018) and the african union agenda 2063 (african union commission 2015) were adopted. south africa complies with the aforementioned guidelines through various documents, including the constitution of the republic of south africa act 108 of 1996, the national plan for higher education, the strategic policy framework on disability for the post-school education and training system (2018), the white paper 3 on higher education transformation (1997), the equity and prevention of unfair discrimination act 4 of 2000, and the education white paper 6: special needs education (2001). the shared understanding on matters such as the sustainable development goals (sdgs), united nations global compact (ungc) principles, and environmental, social, and governance (esg) has led to several bilateral and multilateral collaborations between south african universities and other institutions. in 2007, the university of south africa (unisa) joined the united nations global compact (ungc). university of south africa has made a commitment to the global compact and has outlined several actions to fulfil this commitment. these actions include incorporating the 10 principles of the global compact into university policies and procedures, ensuring that the necessary skills and capacity are in place to carry out their responsibilities, implementing suitable systems and processes to ensure efficient operations, fostering a climate of accountability and responsibility among employees, integrating the 10 ungc principles into teaching and research, engaging with local and global communities to promote sustainability through partnerships, and supporting and advancing the work of the ungc, which focuses on principles related to labour, human rights, the environment, and anarchy. unisa acknowledges that the sdgs may be accomplished by following the 10 principles of the ungc. the organisation is dedicated to promoting the 2030 agenda for sustainable development, with a particular focus on 12 out of the overall 17 sdgs (university of south africa 2022). hence, the aforementioned international agreements, domestic strategies, and policies are interrelated in facilitating fair and equal opportunities for students with disabilities (swds) in south africa. this is achieved by advocating for inclusiveness, accessibility and the integration of assistive technologies within digital learning platforms among others, thus guaranteeing the inclusion of every student in the ever-changing digital education environment. notwithstanding the aforementioned attempts, research on the state of higher education during the coronavirus disease 2019 (covid-19) pandemic suggests that the sector underwent significant upheaval, necessitating a reconfiguration of its structure. during this period, both faculty and students had to adapt their learning, assessment and student support methods. consequently, the use of digital learning platforms was necessitated (tesar 2020). this resulted in a rise in educational inequalities, namely among swds, because of the unexpected transition to these digital learning platforms in south african higher education (ngubane-mokiwa & zongozzi 2021). ngubane-mokiwa and zongozzi (2021) found that these modifications resulted in a higher rate of exclusion for swds, especially when their assessment had to be rescheduled to the second semester because of student’s lack of preparation for the special online examinations. students in the study reported that having to take twice as many assessments at the end of the year was an additional cause of stress. furthermore, as a result of the shutdown of the post office during south africa’s national lockdown level 5, some swds who lacked the required hardware, software and bandwidth were unable to access supplementary materials in alternative formats such as braille or large print. consequently, many students expressed their discontent with their inability to get the assistive devices they often borrowed from the library and receive through post office. prior studies have identified several difficulties or barriers to accessing quality higher education for swds in the south african digital learning context. these include inaccessible learning materials, a lack of awareness and identification of swds, insufficient capacity and support for lecturers (chidindi 2012; zongozzi 2020), and poor implementation of relevant policies (mutanga, manyonga & ngubane-mokiwa 2018; odhav 2009; zongozzi 2020). this provides a rationale to synthesise the literature on equitable access to higher education for swds during the digital learning age in south africa to gain a better understanding of the problem. research problem the context described earlier provides an insight into the potential for increased marginalisation of swds in south africa because of the increasing dependence on digital learning systems. because of the endorsement of international and regional treaties discussed earlier, as well as the national policy and legislative framework, this will constitute a breach of swd’s right to high-quality education and consequently create an inequitable chance for participation in the economic sector. conversely, the south african education white paper 3: a programme for the transformation of higher education (1997) acknowledges the important role of digital learning in terms of expanding access, promoting diversity and enhancing efficiency. this is attributed to the diverse contexts in which learning occurs in this mode, encompassing a range of platforms, individualised pacing, utilisation of various media, and implementation of diverse teaching and learning methodologies. therefore, this method of teaching and learning can help the government to achieve its goal of promoting and enhancing social justice. through the use of digital learning platforms, institutions can have the capacity to accommodate a larger number of students simultaneously, ensuring fairness and equal opportunities (zongozzi 2020). this phenomenon can be attributed to the fact that an increasing number of individuals are depending on online courses, as technological advancements continue to progress (lee & choi 2011). nevertheless, the aforementioned policy’s goals of transforming the higher education sector through expanding access, promoting diversity and enhancing efficiency is defeated by the protracted systematic exclusion of swds where the inevitable use of digital learning platforms without adequate research and policies to guide the needed knowledge, skills and resources to fully engage swds undermines their right to high-quality education. objective of the research the objective of this study is to conduct a review and synthesis of the current literature on swds in digital learning environments in south africa in order to identify gaps in knowledge, policies, practices and resources that impede the full engagement of swds. it is hoped that the logical conclusions of this study may serve as policy recommendations and strategies that promote full inclusion and guarantee fair educational opportunities for all students. this article utilises the conceptual framework for inclusive digital learning to synthesise the literature, determine the framework’s efficacy, feasibility, and suitability, and demonstrate its value and utility in the actual implementation of inclusive and high-quality higher education for swds in south africa during this era of digital learning. from a realist perspective, it is expected that if the relationship between the elements of the framework for inclusive digital learning in the transformation of higher education in south africa is properly configured (zongozzi 2022), it will provide a clear explanation of the factors that enable it. otherwise, it will highlight the obstacles towards the aforementioned necessity. conceptual framework for inclusive digital learning zongozzi (2022) initially formulated the conceptual framework for inclusive higher education in the era of the 4ir as presented in figure 1, by employing a concept analysis technique proposed by walker and avant (2014). the analysis commences with identifying the concept in question, specifically the facilitation of inclusive digital learning for swds within the framework of transformational higher education. the analysis entails examining the several uses of the concept, establishing its defining attributes and identifying typical model and borderline instances related to the concept. antecedents, which refer to the preceding events and elements necessary for the manifestation of a concept, are also a vital component of this framework. the consequences, or the end results that arise from the concept, are likewise a crucial facet of the framework (walker & avant 2014). figure 1: conceptual framework for inclusive digital learning. the framework for this research as illustrated in figure 1 comprises three categories of concepts related to inclusive digital learning: (1) defining attributes, (2) antecedents (necessary conditions) and (3) consequences (results). defining attributes refer to the features that are typically associated with a concept and the phenomena it reflects (walker & avant 2014). the defining attributes for inclusive digital learning, as identified through a preliminary review of academic research and policy materials, encompass the fusion of technologies (butt et al. 2020; goh & aris 2015; naidoo & singh-pillay 2020), the multiplicity of sites (ally & wark 2020; hussin 2018; scepanović 2019), the provision of non-discriminatory educational opportunities (constitution of the republic of south africa act 108 of 1996 [republic of south africa 1996]; promotion of equality and prevention of unfair discrimination act 4 of 2000 [republic of south africa 2000]; department of education 1997; department of education 2001), the promotion of lifelong learning (fomunyam 2016; yusuf, walters & sailin 2020; ally & wark 2020) and the implementation of student-centred teaching and learning that fosters empowerment (ally & wark 2020; reaves 2019; waghid, waghid & waghid 2019). the framework asserts that in order for the defining attributes of inclusive digital learning to be apparent, specific antecedents (necessary conditions) should precede them (walker & avant 2014). these encompass research and discourse (khan 2016; steglitz et al. 2015), policies that bring about significant changes (butt et al. 2020; national policy development framework 2020 [republic of south africa 2020]), the construction of necessary facilities (ravhudzulo 2019; zongozzi 2022) and the enhancement of skills and abilities of university staff (ally & wark 2020; naidoo & singh-pillay 2020; yusuf et al. 2020). furthermore, the consequences of a concept pertain to the specific events or happenings that occur as a direct outcome of the manifestation of the concept (walker & avant 2014). therefore, the outcomes obtained from the configured elements of the framework can be seen as a direct consequence of the concept of digital learning, given that all the defining attributes of the concept appear to be present. the primary objective of this conceptual framework is to provide guidance for the creation of inclusive higher education institutions that enable swds to actively engage in the digital learning environment of the 4ir (desai & johnson 2013). the framework proposes an intricate interdependence among its three primary components and variables. the ultimate result of efforts to offer comprehensive digital education for swds depends on the interplay between the antecedents and the attributes that define inclusive digital learning. zongozzi’s (2022) framework proposes that engaging in research and discourse, which leads to the adoption of transformative education policies, the development of ict-related infrastructure and the capacity building of academic and support staff in higher education, will inevitably unlock the necessary strategic plans, human resources and financial resources. research methods and design this article presents the results of a literature review study that was conducted to uncover the fundamental concepts that underpin this research (peters et al. 2015). this facilitated the identification and illustration of the knowledge gaps in the subject being investigated, as well as the absence of research conducted within the framework of inclusive education in south africa, specifically during the current era of digital transformation (munn et al. 2018). the review provided a comprehensive summary of the current body of knowledge (peters et al. 2015), facilitated the synthesis and distribution of research findings, and offered suggestions for future study (tricco et al. 2016). the purpose of this study was to synthesise the literature, assess the effectiveness, practicality, and suitability of a pre-existing framework, and demonstrate its value and utility in the real-world implementation of inclusive digital learning for swds in south africa, particularly in the context of the digital learning era. the components of the framework were used as a priori areas to focus our examination of the secondary literature to achieve this purpose. given that the pertinent material is found in journal articles, it was imperative to initially seek guidance from the university’s librarian regarding the optimal course of action. consequently, a discussion was held on microsoft teams in june 2023, during which she provided guidance to the researcher throughout the entire process. the search was conducted using google scholar, a web search engine that indexes scholarly literature in many publishing formats and fields. google scholar provides free access to full text or metadata of these articles. we ensured this by accessing the platform via our institutional log in, thereby allowing access to full texts of articles in databases to which the institution subscribes. the key phrases and search string listed hereafter were used to extract information from google scholar using boolean operators: disability and south africa and open distance elearning or open distance learning or digital learning or online learning. the original search yielded a total of 36 200 articles. the author utilised the custom range option offered by the search platform, which enabled us to limit our search results to articles published between 2020 and 2023. this is a period where covid-19 began, leading to an increased reliance on digital learning. this study included only articles that were classified as scholarly peer-reviewed journal articles by google scholar filters and were accessible in their full-text format. a total of 114 articles remained following this process. importantly, the aforementioned remaining articles underwent assessment to determine their credibility and relevance to the issue being studied. this entailed taking into account the publication date to ensure that the work is within the specified study period (2020–2023) and specifically focused on south african higher education. furthermore, this method involved evaluating if the article covers the particular elements of special education, inclusivity and the use of digital technology for learning, as these concepts are central to this study. this process resulted in further exclusion of 92 articles because they were considered irrelevant to the topics of accessibility for swds and the use of digital learning in the higher education setting in south africa. after eliminating all irrelevant publications based on the given criterion, a total of 22 articles were considered suitable for analysis in this study. table 1 presents a list of articles reviewed (n = 22): table 1: articles reviewed (n = 22). the conceptual framework that was proposed (zongozzi 2022) was employed as a priori and a lens to facilitate the examination of available studies. the framework was employed in conjunction with content analysis to organise the fragments of text in a systematic manner (zolnoori et al. 2019). the researcher categorised data into specific framework categories by observing pertinent content in the margin adjacent to the text (srivastava & thomson 2009). the data were subsequently organised in an excel spreadsheet using headings and sub-headings that were consistent with the predetermined inquiries of the study’s conceptual framework. ultimately, the basic features of the data were collected in order to generate a map and conduct a comprehensive analysis of the entire dataset. this entailed the defining and elucidation of terms, the illustration of the variety and type of phenomena present in the data, the development of typologies, the establishment of connections and the development of ‘bottom-up’ explanations for these. it also entailed the recommendation of intervention and practice strategies as required (parkinson et al. 2016). ethical considerations this article does not contain any studies involving humans or animals performed by any of the authors. results research studies on the antecedents of inclusive digital learning research and discourse the bounded review of south african articles published from 2020 to 2023 reveals significant advancements in the discourse surrounding the accessibility of education and swds within the current era of digital revolution. most of the reviewed articles focused mainly on themes such as assistive technologies or technology inclusion (de klerk & palmer 2022; ditlhale & johnson 2022; manase 2023), student support (cebisa 2021; matjila 2023; ntombela 2020; sipuka 2021), experiences, challenges, opportunities, lessons and/or solutions (dube & baleni 2022; kanwar 2021; manase 2021; mutongoza & olawale 2021; ndlovu 2023; pitsoane & matjila 2021; prinsloo & uleanya 2022; singh-pillay & khumalo 2021; zongozzi 2020), higher education institution’s preparedness (pete & soko 2020), methodology and theories (makwembere 2022; ngubane-mokiwa & khoza 2021), equity, inclusion and/or inequalities (common wealth of learning 2021; ngubane-mokiwa & zongozzi 2021), leadership (aluko & mampane 2022), and disability units and practitioners (lyner-cleophas et al. 2021). the emergence of the covid-19 pandemic and its impact on digital learning have contributed to the deserved popularity of the aforementioned study themes. the broader aspects of research in distance education, such as access and equity (zawacki-richter 2009), have arguably gained greater significance and urgency. however, in order to ensure that education is accessible and fair for swds and those from disadvantaged backgrounds, it would have been appropriate to focus on researching macro-level issues such as higher education policy related to remote education (zawacki-richter 2009). policy research considerations play a crucial role in the adoption of transformative education policies that are essential for inclusive digital learning. such policies would minimise the negative effects of the digital divide, provide assistive learning technologies and enhance the capacity of higher education staff, among other factors (butt et al. 2020; chidindi 2012; lourie 2017; zongozzi 2020). hence, the absence of research on education policies undermines most efforts, as seen from the perspective of the proposed conceptual framework for inclusive digital learning. transformative education policies in 2022, dr blade nzimande, the minister of higher education science and innovation, released a call for public comment on the draft policy for the recognition of south african higher education institutional types. this announcement was published in the government gazette no. 47205, notice 2359 on monday, 08 august 2022. the draft policy aims to establish a higher education system that can effectively cater to the diverse backgrounds, needs, interests and abilities of future students. its goal is to enable students to reach their full potential and contribute the knowledge, insight, skill and capability required for the development and reconstruction of our country. this aligns with the objectives outlined in the white paper on higher education and post school education and training (republic of south africa 2022). notwithstanding this endeavour, research on policy developments on education and transformation remains crucial, as effective policies necessitate a strong theoretical foundation. implementing policies and strategies that are flawed in their theoretical design may not be feasible (khan 2016). from the reviewed articles, manase (2023) argued that the university under study had not implemented its own disability policy at the point of conducting her study. the researcher was provided with a draft policy that lacked explicit definitions of both assistive technology and disability. instead, it provided a clear definition and explanation of disabilities within the framework of the medical model of disability (manase 2023). this can worsen the difficulties that students with invisible disabilities (including learning disabilities) encounter in accessing resources, particularly when their impairment is closely tied to a decline in physical abilities, the author argues. to promote equitable access to digital education for swds, pete and soko (2020) advocated for internet providers to offer subsidised internet bundles and for policymakers to reduce tax levies on internet service providers. this would enable learners and instructors to have affordable and dependable internet connections outside of their educational institution. this finding aligns with kanwar’s (2021) suggestion for mitigating the increasing disparities. the author contends that governments and organisations should make efforts to design policies that specifically cater to the needs of marginalised groups such as women, girls, people in distant regions and persons with disabilities. by doing so, they would effectively serve the entire population. pitsoane and matjila (2021) contended that the existing policies and implementation plans fail to effectively address the actual circumstances, primarily because of a lack of coordination in handling disability matters and delayed referral of students to counselling services. they recommended that disability issues be given higher priority and integrated into broader strategic plans of the university to expedite their implementation. the effort will involve training ict staff in various computer software programs required to assist visually impaired students, creating alternative assessments for both formative and summative evaluations, establishing a job readiness intervention programme for graduates to enhance their financial independence and contribute to the university’s employment equity goals, and finally, prioritising the disability unit’s role in coordinating all disability-related matters. perhaps these endeavours would effectively tackle zongozzi’s (2020) concern over policy shortcomings in addressing the implementation of disability-related matters in teaching and curriculum design, as well as the training of staff to handle such issues. in addition, it can also tackle issues related to the insufficient adoption of open-access policies, which therefore leads to a lack of capacity among academic staff in promoting inclusive learning (ngubane-mokiwa & khoza 2021). infrastructure development the articles also addressed concerns related to the development of digital learning infrastructure to accommodate swds. dube and baleni (2022) argue that the shift to digital learning is challenging and has an impact on a broader range of individuals, not simply those with disabilities. network and wi-fi issues are reported to have a widespread impact on online learning in south africa. this is particularly hard because of the relatively high cost of mobile data and wi-fi, as well as the presence of network coverage problems in certain areas of the country. therefore, the difficulties encountered by swds vary significantly based on the specific nature of their disabilities and geographical locations. this declaration from the commonwealth of learning (col) (2021) confirms that the lack of targeted support, internet connectivity, accessible software and learning materials is likely to increase the disparity for swds. thus, the aforementioned concerns are extensively discussed in the literature, with singh-pillay and khumalo (2021) and ngubane-mokiwa and zongozzi (2021) also contributing to the discourse. the former emphasises the contextual challenges faced by swds in their learning environments, such as the absence of necessary resources such as data, reliable internet connection and assistive devices, which hindered their capacity to engage in online learning. however, the latter discovered structural issues in ict, which include insufficient availability of hardware and software, as well as aesthetic design that disregards the needs of swds. kanwar (2021) asserts that government policies and funding will play a crucial role in supporting research and development that is aligning with the proposed framework. ensuring inexpensive and accessible education will heavily rely on the presence of advanced technology infrastructure and reliable connectivity. universities should enhance their alignment with the needs of society and prioritise research that contributes to sustainable development. enhancing the skills and capabilities of university staff the ability of university personnel to support swds in the age of the digital revolution also surfaced as a cross-cutting subject in the analysed studies. zongozzi (2020) contended that swds are often labelled as slow, poor performers, incapable or failure when they fail to perform because of a lack of awareness and clear protocols for identifying these students among lecturers and university officials. this lack of identification hinders the provision of appropriate support. therefore, despite its potential for success, emergency online learning has not been able to provide inclusive education for swds. according to a study conducted by mutongoza and olawale (2021), it is suggested that educators receive training on how to effectively promote learning using unfamiliar technological interfaces, particularly those used by swds for online learning. the study conducted by singh-pillay and khumalo (2021) highlights the absence of personal interaction between lecturers and swds, the importance of actively promoting communication, the necessity of developing particular pedagogical approaches for online teaching, and the obstacles associated with designing inclusive digital learning materials. generally, face-to-face instruction enables students to participate in many activities, including explaining, directing, scaffolding and questioning. nevertheless, the authors contend that lecturers frequently transfer their in-person teaching methods directly to their online teaching without making necessary adjustments. utilising face-to-face material for digital learning does not guarantee accessibility for swds. therefore, it is imperative for lecturers to ensure that the materials they produce are inclusive of those with various disabilities, such as visual, hearing, motor and cognitive impairments. the covid-19 pandemic revealed the university of johannesburg’s insufficient ability to serve swds, which made academics vulnerable. as a result, training methods were developed to enable them to carry on with their teaching and learning activities. this phenomena necessitated the modification of the academic calendar of the institution and the introduction of online learning tools. it also involved the creation of online assessment tools and obtaining approval from the appropriate academic authorities for any changes to be implemented in the programmes (ndlovu 2023). therefore, it is essential that both academics responsible for delivering instruction and administrators and authorities overseeing the online learning platforms receive training. the vulnerability of all stakeholders across the nation makes it necessary to implement a higher education policy that acknowledges the importance of developing staff capability. consequently, lecturers do not feel fully equipped to accommodate swds because of lack of training and preparedness. furthermore, it elucidates the rationale behind the perception of swds at higher education institutions that their lecturers lack supportiveness. according to a lecturer’s viewpoint, their absence is justified in terms of support because they are not given sufficient training to support swds (zongozzi 2020). hence, one study suggested that the united nations educational, scientific and cultural organization, in conjunction with institutions, should give priority to enhancing the skills and knowledge of lecturers and other users in online education through capacity building (pete & soko 2020). according to ntombela (2020), there is little to no interaction between the disability section, known as the advocacy and resource centre for students with disabilities, and academics in a particular university. this is in spite of the fact that the unit is headed by administrators who lack information about the requirements of the curriculum’s mandate to organise advocacy campaigns and advocate for resources. considering the aforementioned problems, manase (2021) proposes the necessity of expanding the range of instructional materials, teaching methods and assessment modalities in order to minimise the disadvantages faced by students with disabilities (swds). she suggests incorporating the universal design for learning (udl) into educational institutions to accommodate all forms of diversity. this can be achieved by designing learning spaces, arranging physical environments, presenting instruction and implementing assessment modes that are accessible and usable by all students, without the need for individualised support, regardless of their specific needs. research studies on the mechanisms and resources for inclusive digital learning this study corroborates cebisa’s (2021) assertion that limited resources exacerbate the issue of accessibility for swds. one study found that a participant with an intellectual disability expressed the view that disability is a multifaceted phenomena. the participant emphasised that relying just on assistive technologies is insufficient, as he also requires the assistance of a caregiver to help with his daily tasks. this is because his intellectual disability necessitates a longer period of time for studying. in the study conducted by dube and baleni (2022), participants did not name any additional assistive technologies provided by the institution, other than user-friendly computers that had enlarged words and symbols specifically designed for visually impaired students. these do not cater for the diverse nature of disabilities nor are they sufficient for the needs of swds. one of the analysed studies found that none of the students were using advanced assistive technology, expressly developed to help with the difficulties caused by learning disabilities (manase 2023). although the institution made accommodations for the students during the examinations, which allowed them to not rely on assistive technology, this may not be a long-term solution to ensuring high-quality inclusive digital learning. however, the study found that the inclusive learning methods mentioned earlier included the practice of merely having swds take tests and examinations in a smaller and noise-free location, separate from other students. additional accommodations were made by others to modify the examination settings. these accommodations included providing extra time, assigning scribes to read and write down students’ responses, allowing the use of spell checks and providing isolated cubicles for students who use scribes or who have severe symptoms of a disability. the col (2021) argues that the solutions provided thus far have included tailored materials and courses to specifically meet the needs of practitioners who provide support to women, girls, individuals with disabilities, and those active in family and intergenerational literacy. it has also created open educational resources (oer) with the aim of enhancing equal access to education using mobile phones and aptus devices, in order to reach individuals residing in rural regions. nevertheless, issues endure in spite of these advancements. platforms such as sunlearn, ms teams and zoom provide difficulties when using accessible technology such as screen readers and braille displays. according to lyner-cleophas et al. (2021), several students expressed the requirement for further instruction prior to their participation in discussions, ability to access educational resources and completion of assessments. given the limited academic schedules commonly found in south african higher education, it is noteworthy that students experience a loss of academic time because of the absence of resources and study materials in alternative and easily accessible formats (pitsoane & matjila 2021). ngubane-mokiwa and zongozzi (2021) found that inclusive digital learning for swds can be worsened by several factors. these include the socioeconomic disadvantage of most swds, the hindrance posed by their disabilities, the prevalence of unfair practices, the exclusion, and inequalities that swds face, and the high costs of internet access. if sufficient procedures and resources are not implemented, the aforementioned groups of students are at risk of either failing or dropping out if they do not receive comprehensive help to access online learning and assessment. defining attributes: the current state of inclusive digital education for students with disabilities in south africa a lack of integration of technology from the literature examined in the scoping review, it is evident that technologies are not sufficiently incorporated into south african higher education to enable fair and equal access for individuals with disabilities during this era of digital learning. the review indicates that there has been extensive research and discussion on this specific aspect. however, this research has not been adequately connected to studies on education policy (kanwar 2021; manase 2023; pete & soko 2020). this connection is important for developing transformative education policies that can help bridge the digital divide (lourie 2017). research should inform policy efforts to address the concerns that hinder inclusive digital learning for most swds. these concerns include their socioeconomically disadvantaged backgrounds, the nature of their disabilities, the prevalence of inequitable practices and the high costs of internet access (ngubane-mokiwa & zongozzi 2021). inflexibility and immobility of learning the framework recognises the value of learning from a variety of locations, as it acknowledges the potential benefits that arise from the combination of 4ir technologies. this integration will enable students the mobility and the internationalisation of higher education (scepanović 2019). the essential characteristic of inclusive digital learning for swds cannot be achieved in south africa because of the existing gaps in research, education policies and the unavailability of equitable technological access. the concerns mentioned in the reviewed articles, such as the absence of assistive technologies and expensive data costs (ngubane-mokiwa & zongozzi 2021), along with the lack of government and institutional efforts to address these issues through inclusive education policies (kanwar 2021; pete & soko 2020), define the discriminatory nature of the current higher education system. absence of continuous learning as a result of the shortcomings, the aspiration for lifelong learning to be a common characteristic of inclusive digital learning for individuals with disabilities remains unfulfilled. this presents a potential hazard as it could make certain learners studying in south africa obsolete for employment in the era of 4ir. the statement is based on the fact that employers in the 21st century are looking for employees who can show innovation, teamwork and entrepreneurial skills. they also need to be able to work well in interdisciplinary teams and incorporate knowledge from different fields into their work. this is because of the fast-paced advancements in technology associated with the 4ir (fomunyam 2016). consequently, swds are deprived of the chance to stay updated with the latest advancements in the 4ir era because of the absence of continuous learning opportunities. inclusive digital learning plays a crucial role in enhancing the skills and knowledge of workers at every phase of their professional journey. discriminatory in nature given that higher education is a constitutional obligation that the state must ensure is accessible and available through appropriate means (south africa 1996), the exorbitant expenses associated with data required for inclusive digital learning, the digital divide and the absence of infrastructure in underprivileged communities inevitably result in the exclusion of individuals from historically marginalised groups. thus, digital learning might be seen as potentially benefiting those who already have advantages rather than those who do not. this would therefore be considered a breach of constitutional rights and, to some degree, be perceived as discriminatory. not student-centred student-centredness refers to the capacity of students to think in non-traditional ways and actively participate in the process of acquiring knowledge by determining their preferred learning methods. nevertheless, as a result of the current limitations in technology resources, swds in south africa are forced to depend on traditional methods of learning. this is somewhat counterintuitive as digital learning ought to promote emancipatory learning (zongozzi 2022). conclusion the growing dependence of south africa on digital learning, propelled by the covid-19 pandemic and 4ir technology, has advantages for several students but may result in the exclusion of swds. this study reviewed 22 articles to assess a framework for inclusive digital learning. the findings revealed deficiencies in research, which impede higher education institutions from effectively assisting swds because of insufficient theoretical knowledge, resources, policies, infrastructure and staff capabilities. a number of south african universities, such as the unisa, have joined forces to work on initiatives pertaining to sdgs, ungc principles and esg matters. nevertheless, the lack of research in the current literature regarding the particular topic leads to a decreased focus on issues related to swds and digital learning in both government and institutional policies. this study thus recommends the need for additional research on higher education policies and their potential for reform to better support swds in the current era of digital learning. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.n.z. developed the conceptual framework in his previous study. both authors, including s.a.n., conceptualised the article, wrote the background and problem statement and synthesised the data. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study 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faculty of medicine and health sciences, stellenbosch university, cape town, south africa nicola a. plastow department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lizette swanepoel department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation van biljon, h.m., van niekerk, l., plastow, n.a. & swanepoel, l., 2023, ‘out-of-home life spaces valued by urban older adults with limited income’, african journal of disability 12(0), a1177. https://doi.org/10.4102/ajod.v12i0.1177 original research out-of-home life spaces valued by urban older adults with limited income hester m. van biljon, lana van niekerk, nicola a. plastow, lizette swanepoel received: 23 nov. 2022; accepted: 27 mar. 2023; published: 16 may 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: access to, and occupational performance in, out-of-home-life-spaces is linked to health, wellbeing and quality of life for older adults. there is little evidence of how this relates to older adults with limited resources in an african urban context. objectives: to describe the out-of-home-life-spaces accessed and valued by older adults with limited resources, living in an urban south african setting. method: an exploratory concurrent mixed methods study saw 84 rehabilitation clinicians conduct 393 face-to-face interviews with older adults. clinicians produced reflective field notes and participated in focus groups. quantitative data were analysed using descriptive statistics with spss version x. qualitative data were analysed through inductive content analysis. results: older adults walked, used mini-bus taxis or private vehicles to get to places of worship, medical facilities, shops, family and friends and special interest gatherings on a weekly or monthly frequency. lack of funds was the main barrier. older adults aspired to travel, go on holiday and to visit out-of-town family homes. conclusion: exploring the daily lived experience of older, urban south africans with limited resources brought to light the value they attribute to participation in activities that contribute to the wellbeing of their families and communities. such activities are found in a variety of life spaces. contribution: results could inform policy makers and service providers in their planning of community mobility, transportation services and health care, for older adults with limited resources. keywords: life spaces; life roles; out-of-town family; quality of life; places of worship; communities and society; public healthcare rehabilitation; medical facilities. introduction over the life course, people live their lives in a variety of spaces that could potentially extend from where they sleep, to places across the globe. however, as people age, they may experience life space constriction, which negatively affects their wellbeing and health (choi et al. 2016) and reduces their quality of life (rantakokko et al. 2016). life space mobility includes where people go, how often they go there, and how dependent they are on others to get there (taylor, buchan & van der veer 2019). it reflects how people move in their communities, utilise community amenities, maintain social relationships and roles, and participate in meaningful activities (rantakokko et al. 2013). exploring older adults’ life space has value as it reflects their mobility and participation in society. a literature review (van biljon et al. 2022) showed that published research on the unmet community mobility needs of older adults was predominantly from higher income countries. identifying only one source from africa, it concluded that peer-reviewed primary research on this subject does not reflect a global drive to end discrimination, exclusion and reduce the inequalities and vulnerabilities that leave people behind (van biljon et al. 2022). in older adults, there is a link between life space mobility and quality of life (rantakokko et al. 2016). a thematic synthesis (van leeuwen et al. 2019) identified nine domains of older adults’ quality of life, namely, autonomy, role and activity, health perception, relationships, attitute and adaptation, emotional comfort, spirituality, home and neighbourhood and financial securtiy. similar to the interconnectedness of key factors impacting on life-space mobility, van leeuwen and colleagues (2019) concluded that quality of life for older adults forms an interconnected dynamic web with the ability to access valued out-of-home places as a key component. morbidity, mortality and healthcare use has been associated with life space mobility (johnson, rodriguez & al snih 2020). the connection between community mobility, going to out-of-home places and the health of older adults is well documented (margot-cattin et al. 2019) and affected by multiple interrelated features (franke et al. 2020). margot-cattin et al. (2021) found that older adults with dementia in switzerland accessed significantly fewer places (m = 15.83) than those without dementia (m = 18.91). people with dementia were limited to visiting healthcare providers, their neighbourhood, visiting family and friends and going to restaurants or cafes. unsworth et al.’s (2021) study of the community mobility patterns of 246 older people across seven countries found using a car as a driver or passenger, and walking were the most frequent modes of transport. most older adults never used public transport options. older adults who were still driving visited places like supermarkets, family and friends, and recreational facilities more often than non-drivers. place of residence and bad weather were most likely to negatively impact out-of-home activities. the population group interviewed in this study were learning to walk when the natives affair act restricted the freedom of movement of black people in south africa. when apartheid was institutionalised, they were at school or trying to find work while laws restricted them from living in designated areas and dictated their right of association. they were young adults during the decades of defiance characterised by uprising and protests, and when nelson mandela was released in 1990, they were middle-aged adults. they were part of a nation that mobilised itself to vote, many of them for the first time, in south africa’s first democratic election, showing a voter turnout percentage of 90% (saho20 2017). more than two decades of constitutional democracy in south africa have seen improvements in previous discriminatory practices that affected this group’s freedom to access places and communities they value. however, the needs of older adults from low socioeconomic areas have often been overlooked (kelly, mrengqwa & geffen 2019) within the gamut of south african challenges. despite the abolition of apartheid in 1994, inequity and poverty persist in south africa and the impact that apartheid had on the life spaces of a large section of older people in south africa is still being felt. one such example is that many older people in south africa did not learn how to drive a motor vehicle, a factor that is closely related to the types of life spaces older people can access (huisingh et al. 2017). in africa, with its resource limitations, investigating engagement in out-of-home activities is important in the light of predicted pressures on transport services as urbanisation increases (stren 2019), and the expectation that the number of persons aged 60 years and older will double between 2017 and 2050 on the continent (united nations 2017). sustainable solutions for healthy ageing populations in urban settings need to be addressed as a global collective to meet the challenge involved (magnus 2012); one aspect being life space mobility. equitable, healthy ageing within urban contexts is not a unique african challenge. poverty has been shown to restrict independence and autonomy in old age (gorman, jones & turner 2019), and low-income groups, in any given country, are most often located in peripheral locations at the edge of cities, thus experiencing transport poverty (lucas et al. 2016). this article reports on findings obtained in a study undertaken to explore the community mobility experiences of older adults with limited resources living in the gauteng province of south africa. it reports the modes of transport they used, difficulties they experienced, strategies they employed and their suggestions for improvements. the specific focus of this article is on out-of-home-life-space-mobility, delineated to be spaces outside the boundary of participants’ own homes. the objectives were to describe the out-of-home-life-spaces accessed, report the frequency with which these were accessed, identify spaces they found difficult to go to and places they hoped to visit in future. research methods and design the research design and process as this was a single study collecting qualitative and quantitative data at the same time, an exploratory concurrent mixed methods study design was used. the qualitative component, which used an exploratory descriptive approach, was predominant throughout, with quantitative data complementing and confirming the qualitative findings. a 27-item semi-structured interview guide was purposefully designed to explore the community mobility and out-of-home life spaces valued by older adults who consented to participate in the research. research setting data collection took place at eight public healthcare facilities throughout the entire gauteng province, south africa, that offered rehabilitation services. public health care service users typically do not have health insurance, and many lived in peripheral townships and informal settlements (vearey 2011). the research team the research team comprised the four authors affiliated with stellenbosch university, all with expertise in contextually relevant research in africa, with older adults, and in the field of community mobility. between march and may 2018, all rehabilitation clinicians working in gauteng public healthcare facilities (n = 193) were invited to participate as field researchers in the study. a multi-professional group of 125 clinicians volunteered and attended research training workshops at their places of work and received research kits that contained the interview forms, notes, appreciation certificates and stationery needed for the research. of these, 84 clinicians completed and complied with the research requirement. during these workshops, the ethical and methodological principles of the research were discussed and the interview form was introduced. the principles of semi-structured interviewing, keeping of field notes, professional reflection and debriefing were reviewed. the 84 clinicians were composed of 28 occupational therapists and 17 occupational therapy technicians, 21 physiotherapists and four physiotherapy technicians, 11 speech and hearing therapists and audiologists and three podiatrists. the first author kept regular contact with participating rehabilitation clinicians, coordinating data collection throughout the research process. participant selection convenience sampling was used to recruit 393 community dwelling adults over the age of 65. field researchers, who as per public healthcare regulation, were in uniform with their names and area of practice visible introduced themselves if there was no prior relationship. they recruited older adult participants, in-person, during participants’ routine visits to public healthcare facilities. some participants were service users while others accompanied friends or relatives. field researchers were asked to recruit as many participants as possible; the numbers they recruited ranged from 1 to 12, with a median of five participants. the decision to recruit older adults at primary healthcare clinics was made as these venues are strategically situated in urban areas, townships, and informal settlements and offered proficient access to the research population. all quotes in the article have participation identifiers that van be explained as follows: (1) the district in gauteng and the number of the interview (2) the participant gender and (3) the participant age. the districts are defined by a letter: (1) t=twane; (2) m=johannesburg metro; (3) e=ekurhuleni; (4) w=west rand; and (5) s=sedibeng. data collection and analysis there were three components to data collection: a 27-item semi-structured interview with the participants, field notes capturing the insights and reflections of the field researchers, and focus groups facilitated by the first author with the field researchers. these focus groups captured their thoughts and insights about the interview process. this article presents an aspect from a larger study with these different sources and is focused predominantly on out-of-home life spaces emerging from the interviews with participating older adults. the 27-item english semi-structured interview guide was paper-based and developed for the local context, based on researchers’ expertise in the field of community mobility, and their work with older adults. it was piloted in february 2018 to improve the content validity of the tool. the pilot study comprised a focus group with four older adults similar to the target population, using the speak-aloud technique (charters 2003). pilot participants discussed their interpretation and possible responses to each of the questions. items shown to be misunderstood were modified and the interview guide was shortened. requests to receive a ‘certificate’ for participation were acknowledged and included. semi-structured interviews, comprising 9 open and 18 closed questions, were chosen as a culturally sensitive method of data collection for the multi-ethnic study population (as opposed to a structured survey with limited response options that were pre-determined by the four white, female researchers who do not have a lived experience of the participants’ reality). the interview guide also acknowledged the importance of oral traditions in an african context (tuwe 2016) by inviting participants to share the stories about out-of-home life spaces they valued and keeping closed question tick-off data collection to a minimum. data collection commenced with field researchers conducting one interview per older adult in accordance with the 27-item semi-structured interview guide. on the same day and place they went to visit a public healthcare facility, older adult participants took part in a face-to-face interview for this study. interviews took place in rehabilitation treatment areas and were conducted by trained volunteering rehabilitation clinicians. older adult participants came to the healthcare facilities accompanied or unaccompanied. they received a certificate of appreciation for their participation. due to a lack of funding for the research and logistics of the research context, no refreshment was provided. all interviews took place between 01 june and 14 september 2018. during and directly after the interviews, field researchers kept field notes in handwriting on the interview form, to capture insights and reflections they deemed noteworthy as prompted by the interview guide. of the trained and equipped clinicians, 67% (n = 84) complied with all aspects of the study by conducting interviews, keeping field notes, and taking part in debriefing and discussion groups. lastly, participating rehabilitation clinicians took part in audio recorded group discussions that were facilitated by the first author and explored final thoughts and insights; these were used to complement and enrich the findings. the first part of the semi-structured interview captured demographical information. the second focussed on meaningful out-of-home life spaces and activities. the third captured information on participants’ mobility modes and needs, barriers they faced and strategies they employed to overcome these. in the final part of the interview, participants were asked to name the places they would go to and things they would do if they had no transport mobility restrictions. older adults’ responses were captured by interviewing clinicians in writing on the interview forms. additional data were provided by clinicians capturing field notes after each interview on the same form and 109 sets of reflective field notes with clinicians’ thoughts, experiences, opinions and observations were added. concluding the data collection stage, 1 h long discussion groups at five of the clinicians’ places of work were held in october and november 2018. these cumulative 5 h of discussions were audio recorded. the following questions from the interview guide informed the exploration of the life space mobility of participants: ‘when you leave the place you stay, your home, what are the important places you go to?’ there were six spaces in which their answers were captured under four headings that were used as prompts by the therapists. for each place named, participants were asked ‘how do you get there? how often do you go?’ (daily, weekly, monthly, yearly), ‘why is it important for you? and are there places you want to go to or things you want to do but find it difficulty or unable to?’ there were five spaces in which their answers were captured. for each place named, participants were asked why they did not go there, or found it difficult. ‘what places would you go to, and things would you do if you had no transport mobility restrictions?’ for the last question, interviewers prompted participants to disregard cost and health and other restrictions. for each place named, participants were asked the meaning of that place, and what mode of transport they would use to get there. data analysis for the results focussed on: (1) the characteristics of adults aged 65+ who attend state primary health clinics in gauteng, south africa, (2) the valued out-of-home places they visit, how do they get there, and why are they meaningful, and (3) where adults aged 65+ with low incomes wish they could go? the interviews, field notes and transcribed audio recordings were captured on microsoft excel and word. closed questions were captured using the response options in the interview guide. the excel spreadsheet was uploaded to the spss x (ibm corp 2020) and the qualitative data was imported to weftqda (fenton 2006). a coding tree was inductively developed for the open questions on modes of transport used, and the out-of-home places. each open question was assigned units of analysis that were added to with each subsequent interview form. a fully integrated approach, integrating qualitative and quantitative data at the data collection, data analysis, and interpretation stages was used. data analysis and interpretation were not linear. instead, all four authors moved back and forth between the different findings to eventually reach a consensus on the key findings. data analysis saw descriptive quantitative analysis of biographical data. inductive content analysis was conducted to identify categories of out-of-home life spaces, modes of transport used and the meanings of places. statistical analysis include counting the number of places named, the mean number of places named by each participant, the number of places visited in each category, the frequency of visiting places in each category, the number of modes of transport used and transport type for each category of place. pivot tables and principal component analysis attempted to determine the relationship between categories of out-of-home places, frequency of visits, and modes of transport used. however, the analysis revealed no meaningful or consistent relationships. trustworthiness and rigour the face validity of the interview guide was improved by means of the pilot study. inter-rater reliability was addressed when the first author provided the same training on data collection techniques to all rehabilitation clinicians. the operationalisation of the research was purposefully kept simple and well-documented in the protocol, consent forms and various dissemination formats to improve reproducibility of the study. ethical considerations stellenbosch university’s human research ethics committee (hrec) provided ethical approval, ref no: n18/01/003. gauteng healthcare’s research committee approved the research, allowing the conducting within gauteng public healthcare, ref no: drc ref 2018-03-008. the south african national health research database (nhrd) registered the study, ref no: gp201802 022. all work was conducted in accordance with the declaration of helsinki (world medical association 2013). volunteering rehabilitation clinicians gave written consent as participants in this research project. they did so after orientation to the research during which they had an opportunity to question and confirm their understanding of their role in the research. older adults gave oral consent, which was recorded on the interview form, after rehabilitation clinicians introduced the research verbally to them, informed them of their right to decline participation or withdraw with no consequences to their right to healthcare services. they were also given an information sheet of the research to take home. no demographics that could lead to identification of the older adults were captured. confidentiality of older adults and clinicians’ contributions were maintained throughout. all interviews were coded with only the first author having access to and ensuring safe storage of consent forms, continuing professional development (cpd) attendance registers, paper-based, electronic and audio interviews, discussion groups and feedback forms. clinicians received cpd certificates. other than that, they and participating older adults were not remunerated and incurred no cost as interviews were done at the healthcare facilities where they worked or that they visited for scheduled rehabilitation services. the data collection stage was concluded at participating clinicians’ places of work with a debriefing session and discussion group. in 2019, results were analysed, summarised and disseminated to all participating rehabilitation clinicians and to rehabilitation services management in the head office of gauteng health. this was done in the form of emails and oral presentations at staff meetings and stakeholder forums. a report was sent to the gauteng province’s head of government office. results participant characteristics in total, 393 older adults, aged between 65 and 98 years (m = 72.39, s.d. = 7.17) were interviewed (see table 1). clinicians reported an average interview time of 10 min – 30 min per participant. just more than half of interviewed older adults reported problems with their walking mobility (51.4%). only 4% (n = 16) of the older adults lived alone. most reported living in a brick house (91%) with indoor access to electricity and water (92.7%). interviewed older adults shared their home with up to 18 other people (m = 3.71, s.d. = 2.31). although more than half (52%) had no schooling or primary education, the majority spoke three or more languages (60%). most (92.7%) were financially dependent on the non-contributory government pension and living on less than 4 us dollars a day. this income supported an average of two other people (m = 1.91, s.d. = 1.94, range 0–12). table 1: characteristics of older adults attending primary health clinics in gauteng (n = 393). easy to reach out-of-home life spaces the 393 interviewed older adults named 1118 currently visited out-of-home life spaces in total, a mean of 2.8 places per person. inductive content analysis reduced this list to 23 categories of out-of-home places within six life space themes. these themes, in order of frequency with which they were named, included: (1) community and social spaces, (2) medical facilities, (3) shops and public amenities, (4) family and friends, (5) places for recreation and physical activity, and (6) work. all places, except annual family visits (n = 39), were within the urban area of gauteng province. community and social spaces the most named out-of-home life spaces were community and social spaces (n = 394 spaces) because ‘we must be part of our community’. of these, places of worship were most frequently named (295/394, 75%). places of worship offered weekly opportunities for spirituality: ‘in church people pray for me. i go for healing prayers’ (t2, female, 65). also: ‘i go because i love god too much’ (e6, female, 75), and ‘so i can go to heaven when i die’ (e17, female, 71) and ‘because the preacher, who talks to god, tells me god loves me and this makes me feel all right’ (t19, female, 69). some participants were elders or deacons or fulfilled other leadership positions. places of worship also enabled participation in charity and social upliftment activities, such as soup kitchens and support outreaches to orphanages and homeless shelters. attending funerals, even if you did not know the deceased or the family, was reported as much valued. this involved food preparation and expression of bereavement to show support and respect towards the deceased. some places of worship provided opportunities for older members to go camping and/or on holiday and organised festivals and events such as soccer leagues. transport to an annual mega-church gathering where congregations gather in different provinces for a few days at a time, was also arranged. places of worship were accessed mostly through walking (109/267, 41%) and minibus taxi (88/267, 33%) and less frequently by motor vehicle (64/267, 24%). the latter was reported to take the form of ride-share clubs. community support groups and special interest groups were mentioned as formal or informal gatherings taking place in private homes, funeral parlours, community halls, all-purpose community centres, healthcare centres and care homes. seniors’ interest groups provided opportunities to ‘gym’ (exercise), grow food in communal gardens, prepare food for the soup kitchen, ‘to learn about new things’, to cook and eat together, sew and crochet, socialise, dance and sing. as one participant noted, ‘singing in the choir is too good for my spirit’ (w12, female, 66). reportedly, a sewing group always began with a prayer session. lunch was often prepared and enjoyed collectively after a group gathering, and singing and dancing occurred spontaneously, if or when the occasion allowed it. the value of the gatherings was summed by a participant as, ‘i go there to mix with people when i am lonely or stressed’ (e14, female, 69). being useful and involved in helping their community was a prevalent theme throughout the interviews. an older adult reported going to the local primary school to ‘watch the children so the teachers can have tea-time’ (w9, female, 65). another reported ‘i visit the sick people in my community and then i pray for them’ (w29, female, 68). working in community vegetable gardens was noted as important for socialising and to produce ‘food to feed us’ as they also sold and processed the vegetables from the gardens for personal and community use, or to supply soup kitchens in their vicinities. at one community health centre, a retired nurse taught other older adult volunteers how to bed-wash bedridden individuals. using designated transport, they then visited homes in their community where families required assistance with caregiving tasks. as one participant noted, ‘you are only somebody if you help somebody’ (w32, female, 72). other community occupations included stokvel and burial societies (11/394, 0.03%). a stokvel is a savings scheme where by-invitation-only groups of people contribute fixed sums of money to a central fund on a weekly, fortnightly, or monthly basis. the accumulated fund is allocated to a member of the group on a rotational basis at a stokvel meeting. burial societies, which meet regularly, are another informal financial group formed by people to cover the costs and cultural expectations of a member’s funeral. if a group member dies, all members are expected to contribute to their funeral costs. medical facilities although all participants were interviewed at a medical facility, only 69% (271/393) participants included these facilities in their life space. their visits were mostly monthly (201/246, 82%). mobility modes included walking, minibus taxi, private car, bus and other forms of transport. participants talked about visiting medical facilities, ‘to get my medicine’, ‘because the doctor says i must go’ or because ‘i have to go to know about my sickness’. six participants also talked about visiting medical facilities for the health needs of family members, ‘i have to take my grandchild (who is disabled) to see the therapists for his exercise’ (s35, female, 68), and ‘my wife is in a wheelchair so i must push her to see the nurses’ (e14, male, 70). shops and public amenities most participants (287/393, 73%) reported visiting shops and public amenities. these places included a variety of shopping centres, income-grant pay points, local government and postal services, and grandchildren’s school. journeys were mostly made by minibus taxi (90/189, 47%), but also walking (53/189, 28%) and private motor vehicle (40/189, 21%). most participants reported visiting shops and amenities monthly (263/393, 67%), with very few reporting daily visits (47/393, 12%). shops were visited for a variety of reasons. shopping centres often had points where participants went to receive the monthly old age grant. at shopping centres, they also purchased groceries and electricity for prepaid metres. they talked about paying accounts and running family errands as their adult children were working. visits to shopping centres were noted as outings and socialising events, appearing to be a means of staying active and avoiding boredom. window shopping, ‘buying with my eyes’ was a favoured pastime. one participant noted ‘i enjoy seeing all the people. being able to talk to everybody and hearing what is happening’ (m21, female, 70). another participant reported visiting the shops for self-care ‘i have to do my nails and my hair… it makes me so happy’ (w17, female, 71). family and friends some visits to family were frequent (weekly or monthly) and to people nearby, while other visits were annual and to ancestral homelands. a participant said: ‘i have to go to swaziland to go and see my cattle. i love my family. we need to keep our family relations. the grandchildren must know who you are’ (e18, male, 74). walking to friends and family close by was common, and was associated with daily (5/149, 0.03%) and weekly (45/149, 30%) visits. minibus taxis and private cars were used to visit families across town, usually monthly (60/149, 40%). of all the bus journeys reported, almost half were taken to visit family and friends (16/36, 44%). annual trips to family in faraway places (39/149, 26%) were taken by bus, minibus taxi, or in a rideshare with someone who had a motor vehicle. places for recreation and physical activity places for leisure and physical activity were seldom named (n = 62 places). yoga, meditation, tennis, squash, fishing and soccer (football) were named as sports. only eight participants named theatre or cinema. most lived in laudium, a suburb with a predominantly indian community. participants talked about watching ‘our movies’ (bollywood) in a community centre. two participants reported visiting a beerhall (shebeen), while one reported gambling. work fifteen participants reported travelling to work on a daily (12/15, 80%) or weekly (3/15, 20%) basis. they either walked (6/15, 40%), used a minibus taxi (5/15, 33%), or a private vehicle (4/15, 27%). difficult to reach out-of-home life spaces most participants experienced restricted life space mobility, with 68% (n = 268) reporting 367 places they wanted to go to but found difficult to get to. community and social spaces that were difficult to reach included political, religious and cultural gatherings. large specialist teaching hospitals were difficult to reach medical facilities (10/268, 0.4%). shops and public amenities that were difficult to reach included wholesale and trendy shopping outlets (69/268, 26%). reaching family and friends was a barrier for many (179/268, 67%), as were recreational and leisure facilities (17/268, 0.6%) such as carnival city, sports stadiums and the johannesburg zoo. fifty participants reported not being able to go on holidays. barriers were predominantly related to financial constraints (182/268, 68%), health restriction (118/268, 44%) and transport problems (35/268, 13%). crime and community unrest (15/268, 6%) on route to, or at places of value was also a barrier. these are expanded on in table 2. table 2: barriers to visiting out-of-home places. out of home and out of reach interviews were concluded with a question: what places would you go to, and things would you do if there were no restrictions or barriers that kept you from doing so? from this question, holidays emerged as an out-of-home place that was out of reach. of all the participants who responded to this question (149/393, 38%), all wanted to travel beyond their urban area or go on holiday (n = 149, 100%), with destinations inside south africa being the most popular. many participants mentioned never having seen the ocean and wanting to go on a ‘beach holiday’. popular tourist and historical sites were also mentioned, such as robben island; one participant said, ‘i want to see for my own eyes where (nelson) mandela and (walter) sisulu were put in jail’ (m31, male, 71). other responses indicated places similar to those mentioned as difficult to go to. of the 353 places named, frequently mentioned places were homes of family and friends whom they had not seen for many years (140/353, 39%). religious and/or spiritual journeys (85/353, 24%) to places such as mecca or jerusalem were mentioned, as were wholesale shopping outlets (80/353, 23%), day outings to the zoo (18/353, 5%) and theme parks (19/353, 5%). participants who had worked as domestic workers in private family homes mentioned wanting to go and visit previous employers (11/353, 3%), ‘i worked for that family for 37 years and i miss them and i want to see the children; if they are married and grown up now’ (w11, female, 69). discussion participants could access life spaces of value that were within close vicinity. these places gave them access to activities that offered socialising, spiritual and emotional support, self-actualising and validation opportunities. a prominent feature of the activities they participated in at these places was their altruism. they valued places where they could partake in activities that helped their families, community, or people in need. they ran errands for and took care of their families and ministered to the less fortunate by working in soup kitchens and community gardens. conversely, the findings confirmed that the out-of-home life spaces of south african older adults with limited incomes are shaped and limited by personal financial restrictions, transport poverty and crime. while prominent policies nationally (maswanganyi 2018; republic of south africa 2006) and internationally (world health organization [who] 2015) recognise the need to address transport poverty and crime and its impact on older adults, the realities reported by participants illustrate a lack of implementation to effect change. the importance of places of worship in the life spaces of older adults was noteworthy because these places had multiple meanings and expanded the life spaces of participants by offering opportunities to travel to religious gatherings and go on outings. similar findings were evident in a study conducted in the uk (tomalin, sadgrove & summers 2019) where semi-structured interviews with black, asian and minority ethnic persons highlighted the importance of spiritual occupations for the older population group. this study’s authors call for the recognition of the importance of religion and spirituality for people attending therapeutic services. the frequency of visits to health facilities could be the result of recruitment for this study, which was conducted at healthcare facilities and interviews held by healthcare practitioners who advocated the attendance at rehabilitation services. a comparison with older adults from the general population might be useful. respondents reported being within walking distances to and from healthcare facilities, which was a positive indicator for south africans’ right of access to healthcare (south african government 1996) and universal health coverage goals (evans, hsu & boerma 2013). shopping centres have already been identified as places of multiple meaning and value to older adults (bruggencate, luijkx & sturm 2018) as have special interest groups as life spaces of value (masoga & shokane 2019). culture-specific interest groups, such as stokvel and burial society meetings, need to be explored in more depth for the value that they offer, especially because these forms of self-help initiatives originated in response to the problems of poverty and income insecurity in communities (matuku & kaseke 2014). fiscal, opportunity and transport poverty were the predominant barriers that restricted the older adults going to life spaces they valued. being able to go on holiday, visit popular historical sites or return to places where they grew up were the aspirations of older adults, which, in contrast, are opportunities regularly used by more affluent south africans. the out-of-home life space mobility of persons was limited by resource limitations more evident in spaces further away from the family home. out-of-home life spaces closer to home were frequently visited, predominantly through walking. drawing on the transactional nature of occupation, the restrictions imposed by macro-level infrastructure limitations on the occupations of vulnerable groups require consideration. in spaces that were accessed mostly through walking, older adults engaged creative solutions to overcome barriers, for example, walking in groups to reduce exposure to crime. however, further away spaces were affected by infrastructure limitations at system levels that require influence by local or national-level policy makers. advocacy for transport infrastructure that is accessible to vulnerable groups, such as older adults, is a key responsibility of service providers who understand the importance of out-of-home life space in maintaining health and quality of life; this includes occupational therapists. strengths and limitations of the study the nature of the therapeutic relationship might have impacted positively on results as clinicians reported older adults enjoyed having their undivided attention resulting in lengthy detailed interviews. another strength is that the interview guides were specifically developed for the research population and are available from the first author. nevertheless, clinicians reported difficulty fitting the interviews with older adults into their busy public healthcare practices. language, cultural and educational differences between interviewing clinicians and participating older adults were reported to have been a barrier, and these may have affected the quality and content of the interviews. interviewers reported having to translate and explain abstract and open-ended questions. the nature of the therapeutic relationship might also have impacted on results, for example, reporting going to beerhalls as life spaces of value might have been censored. there were difficulties interviewing older adults with speech and/or hearing problems reported, with no mitigation registered, as only 11 of the clinicians had speech and hearing training to address this situation. due to the uniqueness of the south african settings, and the use of a convenience sample, external validity is limited. another potential limitation was balanced reporting of quantitative and qualitative findings obtained using mixed methodology to answer our research question. such complexities associated with mixed methods have been described as a potential recipe for disaster (plastow 2016). this article is not situated in a positivist paradigm, in which numbers and statistical analysis present the truth. we were not trying to measure older adults’ life spaces (e.g. by using the life space assessment) or recruit a generalisable sample of older adults. instead, this research was situated within an interpretivist paradigm in which the subjective reality of older adults’ life spaces was of primary interest. we wanted to understand each person’s reality based on their experience of that reality. for that reason, we deliberately placed emphasis on the inductive analysis of where older adults in gauteng go, and interpreted these findings as life spaces that were within reach, difficult to get to, or out of reach. it did not matter how far away from a person’s home a destination was, we wanted to know if they could get there or not. we viewed participants’ quotes as critical to understanding their reality. the quantitative data was complementary to this analysis. it helped us understand how many participants went to places, the frequency with which people went there, and their most common modes of transport. this article can therefore be criticised for not analysing the quantitative data to its full, objective, potential. but can also be criticised for not using in-depth semi-structured interviews with a smaller number of participants. this study and the methodology we used may raise more questions than answers. as only the second study in africa to address the community mobility needs of older people, the hope is that the questions raised for reviewers and readers will be a spark for future research. conclusions a report (united nations 2017) on global ageing calls for multi-sectoral policies to ensure that older persons are able to participate actively in economic, social, cultural and political life. limited financial means, transport poverty and crime thwart the realisation of this, for older adults who were interviewed for this study. future research is recommended to highlight additional barriers. transport poverty and crime are addressable if there is political will, and if communities take responsibility for the well-being of their older adults. this was demonstrated by places of worship where rideshare-clubs and designated transport allowed access to events and life spaces of value. future research may focus on the implementation and effectiveness of similar strategies in other sectors, such as retail and healthcare. fiscal and opportunity poverty are more complex issues, and the former is a national concern in south africa (ramaphosa 2019). active travel was used as a strategy by older adults in this study, as they went to life-spaces that were within walking distance from their residences. the other strategies that older people in south africa use to maintain access to their life spaces are another interesting avenue for investigation. the critical importance of spiritual occupations for older south africans with limited income is shown in this study. it also brought to light the value they attribute to participation in activities that contribute to the wellbeing of their families and communities, and that such activities are found in a variety of life spaces. policy makers, researchers and service providers should take note of this, and incorporate social participation into their planning of community mobility, transportation services and health care for this cohort. finally, the findings of this study taught us that older adults with limited income are an underutilised support resource in south africa, that could be activated and mobilised to the benefit of the communities they live in. acknowledgements the study was inspired by an i-chat (the international expert advisory panel on community health and transport) project discussion and saw a collaboration between stellenbosch university and gauteng health. indebtedness to and acknowledgement of rehabilitation clinicians’ voluntary involvement, gauteng healthcare’s rehabilitation management for their support and all the older adults who consented to be interviewed. blair mcdougall and nurya van biljon for assistance with data capturing and transcribing. luther monareng, for his insights on urban township living. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions h.v.b. was responsible for conceptualisation, involved in all phases of design, operationalisation and data collection, analysis, data curation, writing of first draft and revision of text to completion, submission to journal and corresponding author. l.v.n. was responsible for supervision of all phases, conceptualisation, analysis, data curation, writing, review and editing. n.a.p. and l.s. contributed to the analysis, data curation, writing, review and editing. funding information the authors received no financial support for the research, authorship and/or publication of this article. data availability the data that support the findings of this study are available upon reasonable request from the corresponding author (h.v.b.). disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated stakeholders. references bruggencate, t., luijkx, k.g. & sturm, j., 2018, ‘social needs of older people: a systematic literature review’, ageing and society 38(9), 1745–1770. 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conclusion acknowledgements references about the author(s) mayur urva department of orthopedic surgery, institute for global orthopaedics and traumatology, university of california, san francisco, united states claire a. donnelley department of orthopaedics and rehabilitation, yale school of medicine, new haven, united states sravya t. challa department of orthopaedic surgery, harvard university, boston, united states billy t. haonga department of orthopaedic surgery, muhimbili orthopaedic institute, dar es salaam, united republic of tanzania saam morshed orthopaedic surgery, institute for global orthopaedics and traumatology, university of california, san francisco, united states david w. shearer orthopaedic surgery, institute for global orthopaedics and traumatology, university of california, san francisco, united states nooshin razani department of epidemiology and biostatistics, university of california, san francisco, united states citation urva, m., donnelley, c.a., challa, s.t., haonga, b.t., morshed, s., shearer, d.w. et al., 2023, ‘transfemoral amputation and prosthesis provision in tanzania: patient and provider perspectives’, african journal of disability 12(0), a1084. https://doi.org/10.4102/ajod.v12i0.1084 note: additional supporting information may be found in the online version of this article as online appendix 1-3. original research transfemoral amputation and prosthesis provision in tanzania: patient and provider perspectives mayur urva, claire a. donnelley, sravya t. challa, billy t. haonga, saam morshed, david w. shearer, nooshin razani received: 27 may 2022; accepted: 10 oct. 2022; published: 14 feb. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the burden of disability because of traumatic limb amputation, particularly transfemoral amputation (tfa) is disproportionately carried by lowand middle-income countries. the need for improved access to prosthesis services in these settings is well-documented, but perspectives on the burden imposed by tfa and the challenges associated with subsequent prosthesis provision vary among patients, caregivers and healthcare providers. objectives: to examine the burden of tfa and barriers to prosthesis provision as perceived by patient, caregiver and healthcare professional, at a single tertiary referral hospital in tanzania. method: data were collected from five patients with tfa and four caregivers recruited via convenience sampling, in addition to 11 purposively sampled healthcare providers. all participants participated in in-depth interviews regarding their perceptions of amputation, prostheses and underlying barriers to improving care for persons with tfa in tanzania. a coding schema and thematic framework were established from interviews using inductive thematic analysis. results: all participants noted financial and psychosocial burdens of amputation, and perceived prostheses as an opportunity for return to normality and independence. patients worried about prosthesis longevity. healthcare providers noted significant obstacles to prosthesis provision, including infrastructural and environmental barriers, limited access to prosthetic services, mismatched patient expectations and inadequate coordination of care. conclusion: this qualitative analysis identifies factors influencing prosthesis-related care for patients with tfa in tanzania which are lacking in the literature. persons with tfa and their caregivers experience numerous hardships exacerbated by limited financial, social and institutional support. contribution: this qualitative analysis informs future directions for research into improving prosthesis-related care for patients with tfa in tanzania. keywords: transfemoral amputation; low-resource setting; prosthetic rehabilitation; barriers; qualitative; thematic analysis; caregiver; tanzania. introduction as of 2017, an estimated 57.7 million people were living with traumatic limb amputations (mcdonald et al. 2021) with this disability burden disproportionately carried by lowand middle-income countries (lmics) (harkins, mcgarry & buis 2013). while in high-income countries (hics) amputation is typically a complication of peripheral vascular disease or diabetes, trauma as a cause of amputation is more common in lmics such as tanzania (agu & ojiaku 2016; chalya et al. 2012; gebreslassie, gebreselassie & esayas 2018; grudziak et al. 2017; ogeng’o, obimbo & king’ori 2009; thanni & tade 2007). among amputations, it is reported that the incidence of transfemoral amputations (tfas) is up to 34% (grudziak et al. 2019). patients sustaining a traumatic tfa have a 68% increase in metabolic cost, or the fatigue caused by ambulation and the impetus for the development of above-knee prostheses has been to restore mobility and decrease this metabolic cost (czerniecki 1996). prostheses also offer persons with tfa increased opportunities to participate in society and be economically productive (donnelley et al. 2022; harkins et al. 2013), but the large unmet need in low-resource settings extends beyond just the costs of prostheses (lemaire, supan & ortiz 2018). lowand middle-income countries often cannot prioritise prosthesis services because of strained resources, no access to prosthesis materials, and a lack of established models of prosthesis provision, leading to an estimated 29m individuals in resource-limited environments that are in need of orthotic and prosthetic services (harkins et al. 2013; jesus & hoenig 2019). a single trained prosthetist can treat about 250 people annually, suggesting that based on estimates, eastern sub-saharan africa requires 2400 prosthetists (world health organization [who] 2005) and associated centres equipped to deliver prosthesis care. however, despite the high disability burden, prosthetics and orthotics training programmes exist in less than 25% of developing countries (who 2005). institutions such as the tanzania training centre for orthopaedic technologists (tatcot), the primary prosthetics and orthotics training institute in east africa, have attempted to address this gap, but as of 2012, only about 425 prosthetists had been fully trained (sexton, shangali & munissi 2013). in addition, prostheses from industrialised countries are often not well designed for the specific environmental and lifestyle needs of low-resource settings, and the technology can require regular maintenance that makes the sustainability of these interventions challenging (donnelley et al. 2021; harkins et al. 2013; meanley 1995). the challenges faced by persons with amputations, particularly those with lower-limb amputations, are well-documented (andregård & magnusson 2017; shaw et al. 2018), but perspectives differ among patients, caregivers and healthcare providers (allen et al. 2020; ibrahim et al. 2019; song et al. 2019), especially regarding the role of prosthesis provision and obstacles to providing appropriate care. the purpose of this study, therefore, was to examine: (1) the burden of tfa experienced by patients and caregivers, and (2) the challenges associated with prosthesis provision as experienced by patient, caregiver and healthcare professional, at a single urban community in tanzania. research methods and design study design this qualitative study involved 20 semi-structured interviews of patients with tfa, their caregivers, and healthcare providers from the orthopaedic surgery, orthotics and prostheses, and social work departments of muhimbili orthopaedic institute (moi). muhimbili orthopaedic institute is a tertiary referral hospital in dar es salaam, tanzania, with a high volume of orthopaedic trauma. muhimbili orthopaedic institute has one of only a few prosthesis fabrication workshops in the county. recruitment the study identified patients from a concurrent, larger prospective cohort study of 30 patients with tfa provided with definitive modular endoskeletal transfemoral prostheses; the design and methods of this study have been previously reported (von kaeppler et al. 2021). patients and caregivers presenting to moi prosthetics and orthotics workshop for follow-up of the prospective cohort study were screened for eligibility from november 2017 to january 2018, and were eligible if the participant was over 18 years of age, if patient completed a unilateral tfa between 6 months and 2 years prior to recruitment and if willing to provide recorded verbal consent. participants were not eligible if the patient currently uses or previously used a prosthetic limb at the time of recruitment, or were unable to verbally comprehend and respond to interview questions. purposive sampling was used to identify groups of healthcare providers practising at moi with different expertise (prosthetists, orthopaedic surgeons and social workers) to incorporate perspectives from multiple steps of prosthesis provision, including amputation, prosthesis fitting and rehabilitation. the study was announced to all providers from the above departments and volunteers were recruited. recruitment ended when data saturation was reached and additional interviews were yielding diminishing returns of new information. a summary of the participant recruitment can be seen in figure 1. figure 1: participant recruitment. ethical considerations the study was approved by the national institute for medical research (nimr) in tanzania, as well as the institutional review board (irb) at university of california, san francisco (irb # 19-27566). the institutional review board issued an ethics exemption for the study because it is research that only includes interactions involving educational tests, survey procedures, interview procedures or observation of public behaviour. participants were informed about the study purpose and reassured that their responses would not affect their participation in the concurrent prospective cohort study. recorded verbal consent was provided at the beginning of the interview. interviews interviews were conducted at moi between november 2017 and january 2018. interviews were conducted in english or swahili per interviewee preference, by a study investigator with experience in qualitative study design. where needed, swahili translation was provided by one of three trained local research coordinators. field notes were recorded during and after interviews, which typically lasted 45 min – 1 h. all interviews addressed: (1) the impact of tfa in an urban tanzanian community and (2) the process of prosthesis provision. a template of questions was designed by the study authors based on literature review, with input from prosthetists, orthopaedic surgeons, and social workers at the home and partner institutions. all interviews began with a standardised, open-ended questions, followed by questions tailored to participant background; a list of potential participant-specific questions that was used as an interview guide can be seen in table 1a1. interviewees were then prompted to address the following topics: financial challenges, changes to social relationships and role in the community, and challenges with receiving and providing medical and prosthetic care related to the tfa. in the second stage of the interview, patients and caregivers were asked what changes they expect after receiving their prosthesis, while healthcare professionals were asked what challenges they have experienced or witnessed while providing prostheses. data analysis audio recordings were transcribed verbatim in microsoft word and imported into atlas.ti qualitative analysis software (scientific software development gmbh) (thomas 2006). utilising a subset of transcripts, two investigators (m.u, c.a.d) developed an initial coding framework inductively based on emerging themes and ideas. code groups were defined as repeated themes, and codes were defined as categories within the code groups. a comprehensive list of codes and code groups was established, and all investigators reviewed the coding scheme. atlas.ti (mac versions 8 and 9) was used to code the interviews independently and in duplicate by investigators (m.u, c.a.d) according to the coding schema (table 1 a2). informal intercoder reliability assessments were conducted throughout the coding process to ensure consistency in the utilisation of codes between investigators and establish trustworthiness of data analyses (lincoln & guba 1985). next, two investigators (m.u, c.a.d) employed inductive thematic analysis (thomas 2006), whereby themes were developed from the coded text and incorporated into a conceptual framework (table 1). the research team used this framework to identify perceived connections between: (1) burden of amputation on patients and caregivers, (2) expectations of and perceived impact of prostheses and (3) obstacles to providing prostheses to persons with tfa. anonymised quotations were extracted to support the thematic analysis and to highlight the perspectives of the different stakeholders who were interviewed. a collection of supporting quotations is included as table 1 a3. table 1: thematic overview by participant group. results participants the final study population included 20 individuals: (1) 5 patients with tfa, (2) 4 ‘caregivers’ defined as individuals responsible for a large component of the care of the person with a tfa, and (3) 11 healthcare providers representing 3 professions, namely orthopaedic surgeons (n = 4), prosthetists (n = 4) and social workers (n = 3). patients were predominantly male (87%), and of average age of 18 years; subset of data from concurrent prospective cohort study (weir, ephraim & mackenzie 2010). of the five patients with tfa, one had received a prosthesis by the time of the interview, and the remaining patients were scheduled to receive prostheses through the concurrent prospective cohort study. patient and caregiver interviews perceived impact of amputation patients and caregivers identified financial and psychosocial consequences of tfa. many persons with tfa are of working age in vocations requiring manual labour, and amputation led to the loss of employment. social stigma and loss of agency contributed to increased feelings of hopelessness and isolation: ‘before amputation, i was just normal. i was able to go anywhere i want and do anything i want to do. since the amputation, i don’t do anything. i just stay at home. it isn’t okay with me, but i just have to accept the fact that it is done.’ (record 49, patient, 20 december 2017) ‘i have lost a lot of friends and been rejected to the bigger community, which annulled me because they thought i’m a beggar. if i tried to call to say hi, they thought i would ask for help. so i lost a lot of friends and some relatives as well. […] most of my friends never answer my phone calls and i have very few people who are still with me.’ (record 30, patient, 09 december 2017) caregivers in particular reported that the increased responsibility of caring for a person with tfa often caused a decrease in their own ability to provide for their family, due to the burden of time and responsibility towards the person with tfa: ‘i have spent all of my money and resources for my father’s treatment. when i was a taxi driver, i used to make money. but, since my father’s amputation, i haven’t had a proper income to support my family, my father, or myself.’ (record 99, caregiver, 23 december 2017) perceived impact of prosthesis patients and caregivers were optimistic about the potential impact of receiving a prosthesis. participants hoped for increased independence and re-establishing their participation in the workforce and communities: ‘i think [having a prosthesis] will change my life 100%, because i will finally be able to walk again, do my own domestic activities as well as my small business as i used to. i can also interact with my community in a way that i want to.’ (record 5, patient, 12 january 2018) perceived obstacles to prosthesis provision patients had limited knowledge of the rehabilitative process and how to access prosthetic care: ‘we came for two visits to see the surgeon after [patient’s] amputation, when we were advised about pt [physical therapy] but we weren’t told about prosthetics [until later]. it seems like knowledge of where and how we can get a prosthetic has been lacking, and that’s the biggest hurdle to his care so far.’ (record 99, caregiver, 23 december 2017) a widely perceived limitation of prostheses was prosthesis management after initial provision. the cost of prosthesis repair and replacement dampened expectations for ongoing independence and for prosthesis longevity: ‘once we get the prosthetic and the follow-up is finished […] we will try our best to save up to get a new prosthetic. i don’t know how long this prosthetic will last.’ (record 50, caregiver, 21 december 2017) healthcare professional interviews perceived impact of amputation healthcare professionals recognised the significant financial and social burdens of tfa: ‘for most [patients], they are the breadwinners of their family, and they are responsible for taking care of their families. so after getting an amputation, they are not able to care for their families […] to them, amputation is the end of their lives as they know it.’ (record 2, social worker, 05 january 2018) perceived impact of prosthesis healthcare professionals saw prostheses as a chance for patients to return to previous activities: ‘we can see even after providing a prosthetic, they still don’t have their own limb but they are able to return to functioning and working.’ (record 20, prosthetist, 28 december 2017) perceived obstacles to prosthesis provision healthcare workers noted several limitations to prostheses provision in tanzania, predominantly the lack of access. government awareness, in addition to minimal support and unavailability of prosthetic services was noted, particularly in rural regions: ‘… there are two [prosthetic and orthotic centers] in dar [es salaam]. there are about 60 million people and less than 10 centers in the country.’ (record 3, prosthetist, 02 january 2018) ‘out of 100 people at the ministry of health, maybe two or three are aware of our department and what we do. even when they see people with prosthetics, they likely think that the patients were treated internationally.’ (record 20, prosthetist, 28 december 2017) patients that have a nearby prosthetist centre and can receive a prosthesis still need to navigate a long and difficult rehabilitative process: ‘we have very few centers, so we have patients traveling from far away to dar es salaam […] we need time to make a prosthetic, from two weeks to 1 month […] if it’s one month, these patients coming from elsewhere have to stay here, which costs a lot of money […] so things like gait training get shortened, because the patient has to go back home before they are able to walk well on the prosthetic.’ (record 4, prosthetist, 09 january 2018) prosthetists observed that prosthesis longevity can be significant despite the challenges of maintenance and repair. however, replacement can be costly and difficult because of resource limitations: ‘since we have been providing prosthetics for quite a long time, we can see that amputees can use prosthetics for even 10 years. we can replace the socket or foot for free when the patient needs it.’ (record 1, prosthetist, 27 december 2017) ‘the problem will happen when these knee joints get broken. we might not have other joints to replace these broken joints, which means that they might have to go to a different joint and learn about that, get used to that.’ (record 4, prosthetist, 09 january 2018) poor functionality and adaptive capability for the current infrastructure in tanzania were noted to further limit the potential impact of prostheses: ‘apart from poverty, the environment is a barrier to prosthetic care. for example, sometimes the prosthesis we make for patients can’t be used on muddy ground, but that’s very difficult in tanzania. for instance, today it has been raining and most of our patients don’t have private cars. there is no way to escape the mud. the infrastructure in this country is not suitable for prosthetics.’ (record 3, prosthetist, 02 january 2018) inadequate counselling about these limitations can cause a mismatch between patient expectations and reality, which in turn can lead to disappointment and prosthesis abandonment: ‘the other day, i did a prosthetic […] the patient didn’t like the cosmetic cover because it didn’t match the color of his skin […] his prosthetic was fit to be used by a farmer, as he needs it to fit in gumboots, etc. at the end of the day, he left the prosthetic because he didn’t understand how much it could impact his life. […]’. (record 20, prosthetist, 28 december 2017) operative planning in the setting of tfa was largely determined by surgeon discretion without input from prosthetists, which could limit stump-site suitability for prosthesis: ‘we don’t normally consider how much [of the stump] to retain for future rehabilitation, because prosthetics are really expensive and most of our patients cannot afford them […] now, surgeons operate and leave prosthetics and orthotics to deal with the stump.’ (record 100, surgeon, 27 december 2017) discussion to the authors’ knowledge, this study is the first to qualitatively compare patient, caregiver and healthcare perspectives of tfa in tanzania. such findings contextualise infrastructural limitations and further describe local perceptions of tfa and prosthesis provision, informing strategies to improve care for patients with tfa in low-resource settings. the caregiver burden in the setting of chronic disability in hics is well documented (altieri & santangelo 2021; tsoulou et al. 2019; weir et al. 2010), but few studies have examined the caregiver burden in lmics, despite the higher disability burden (gajraj-singh 2011; leurs et al. 2018; schulz, visintainer & williamson 1990; thrush & hyder 2014). the findings of this study demonstrate that the psychosocial and economic burden of tfa extends beyond the patient. while all participants noted the impact of tfa on patients, caregivers also experienced isolation, loss of employment and hopelessness in the aftermath of their family member’s amputation. particularly in the case of elderly patients whose adult children take on the role of caregiver, the burden of caring for the person with tfa depreciated the caregiver’s ability to fulfil their other roles as a parent and family member. the impact of amputation quality on rehabilitative outcomes is well described (cosgrove et al. 2002; sooriakumaran et al. 2018). healthcare providers from all professions noted that the lack of care coordination between specialties, or the lack of surgical awareness that prosthesis provision was possible, led to surgical planning that did not include stump-site preparation, making eventual rehabilitation and prosthesis provision more challenging if the residual limb was not suitable for a future prosthesis. this is supported by the work of kam et al. (2015) who found that inappropriate surgical procedures that affected prosthesis fit and a lack of follow-up care were major barriers to rehabilitation of persons with amputations in low-income countries. one solution implemented at the study site after interviews were completed was incorporating a prosthetics and orthotics elective into the orthopaedic residency curriculum, which improved the surgeons’ understanding of planning for prosthesis provision. one prominent theme in this study was mismatch between patient expectations and reality, which may lead to prosthesis abandonment. prosthesis abandonment has been previously reported in this population as high as 30% (von kaeppler et al. 2021). to patients and caregivers, the idea of a prosthesis represents a complete return to life before amputation, whereas prosthetists may have a more realistic understanding of the ongoing rehabilitation and unique challenges to long-term prosthesis use. for example, prostheses in low-resource settings require specific functionality to allow for navigating uneven terrain and environmental conditions, in addition to participating in cultural norms such as squatting and genuflecting to elders (kam et al. 2015; marino et al. 2015; meanley 1995). prostheses with such capabilities are likely not accessible, while lower-cost prostheses with less ability to replicate native knee kinematics may be available. prosthetists also noted how cosmesis changed whether patients felt comfortable using their prosthesis in the long term. properly managing expectations with perioperative and postoperative counselling and utilising prostheses specifically designed for the tanzanian environment and cultural context may help with ensuring their long-term impact. based on the findings of this study, long-term impact of prostheses is limited by prosthesis longevity and institutional support, a fact recognised by patients, caregivers and healthcare providers alike. the cost of repair and replacement is a primary cause of prosthesis abandonment, and external funding is often necessary, but insufficient, to care for the total population of persons with amputations (harkins et al. 2013; marino et al. 2015). therefore, further exploration of government-driven interventions is essential. ennion et al. reported some challenges of implementing disability grants for persons with amputation in rural south african communities, where they provided essential temporary support but did not always improve adherence to a difficult and frustrating rehabilitation process (ennion & johannesson 2018). in the current study, patients often expressed a desire for increased support in the form of employment protections and entrepreneurial grants. healthcare providers hoped that manufacturing and import costs and gaps in health insurance coverage could be addressed in the future. to ensure true sustainability, country-specific interventions will need to consider various environmental, socioeconomic, and cultural nuances, and incorporate stakeholders from multiple perspectives. this study had several limitations. only one patient had already received a prosthesis at the time of interview and prostheses were provided free of charge. therefore, patient and caregiver perspectives of prosthesis benefits and challenges were largely speculative and possibly more positive than if they were not provided for free. furthermore, the dominance of the provider view led the results to tend towards service provision rather than the experience of limited access. additionally, while this study contributes a tanzanian perspective to the literature, it only includes a single site at a specialised urban centre. including rural tanzanian communities would have provided a more comprehensive perspective. finally, capturing more information about occupation, age, gender and family role would have allowed for a deeper exploration of the interaction of these domains with the themes that emerged from the study analysis. despite these limitations, this study sought to include the perspective of several relevant stakeholders, including patients, caregivers and healthcare workers from different professions. the study also explored factors such as the impact of poor multidisciplinary communication and mismatched patient expectations, that have been less widely reported. conclusion transfemoral amputation in tanzania carries a significant financial, psychological and social burden for patients and caregivers alike. the quality of prosthesis provision is hampered by poor suitability to the current infrastructure, financial limitations to prosthetic services, mismatched patient expectations and healthcare management. these data support the need for further study into prosthesis longevity in lmics and methods to improve access to rehabilitation as well as financial and psychosocial support for amputees and their caregivers. acknowledgements the authors acknowledge the following individuals for their invaluable support in developing the interview questions and in recruiting study participants: ms. leah alex mamseri (prosthetist), ibrahim nassib sasillo (research coordinator), justin kessy (research coordinator) and joshua ngahyoma (research coordinator). competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.c. conceived the study, conducted interviews, and carried out study design and implementation with b.h., s.m., and d.s. m.u. and c.a.d. completed the thematic analysis and manuscript preparation, with input from all authors. n.r. supervised the project. funding information this project was made possible with support from the wyss foundation. data availability raw data were generated at university of california, san francisco. derived data supporting the findings of this study are available from the corresponding author m.u. upon reasonable 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developing countries for prosthetics and orthotics services, world health organization, viewed 14 may 2021, from https://apps.who.int/iris/handle/10665/43127. abstract introduction the social versus the psychological a psychosocial theoretical framework a psychosocial analysis: reading the encounter reprise acknowledgements references about the author(s) lisa saville young department of psychology, rhodes university, grahamstown, south africa jessie berry department of psychology, rhodes university, grahamstown, south africa citation saville young, l. & berry, j. 2016, ‘slipping and holding minds: a psychosocial analysis of maternal subjectivity in relation to childhood disability’, african journal of disability 5(1), a266. http://dx.doi.org/10.4102/ajod.v5i1.266 original research slipping and holding minds: a psychosocial analysis of maternal subjectivity in relation to childhood disability lisa saville young, jessie berry received: 12 feb. 2016; accepted: 25 may 2016; published: 26 july 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: this paper elucidates a methodological approach to interview text that tries to acknowledge the psychosocial nature of disability and thereby ensuring that empirical work in disability studies complements theoretical arguments already developed. objectives: the aim of this study is to outline a psychosocial conceptualisation of maternal subjectivity in relation to childhood disability and to apply this conceptualisation as an analytic tool to segments of an interview with a mother of a child with physical and developmental disabilities. method: drawing on psychoanalysis and attachment literature alongside critical social psychology we take readers through the analysis of an interview extract with a particular mother. through a fine grained analysis, we demonstrate the value of attending to the affective processes in and around the text rooted in the particular intersubjective exchange (‘here and how’) of the interview and the particular socio-historical context (‘there and then’) in which the mother, child and researcher are located. findings: the reading draws attention to discourses that position this particular mother and her children in particular ways while also pointing to investments in these discourses such that these discourses are not purely social but play affective functions. conclusion: this paper demonstrates the value of using multiple lenses to read the text, seeking to understand what is going on from within each lens (discursive/social, interpersonal, intrapsychic), while also seeking to disrupt this understanding as we take up the position of a different lens. this approach enables us to hold onto the complexity and locatedness of maternal subjectivity for mothers of children with disabilities. introduction our approach in this study is, firstly, to develop a rationale for a psychosocial conceptualisation of disability by providing a brief outline and critique of two distinct areas of research or theorising relevant to childhood disability – the social model of disability and the attachment literature. we argue that these totally separate bodies of work point to the social–psychological dualism in the literature which maintains the false and unhelpful division between inner and outer worlds critiqued in an emerging field of research called psychosocial studies. this argument is not new within the field of disability where shakespeare (2006a) has argued against dichotomous thinking and where watermeyer and swartz (2008) and goodley (2011) have argued for the value of drawing together critical disability studies with social psychoanalytic thinking. however, drawing together the social model with contemporary attachment theory (as arguably a variant of psychoanalytic thought) is a novel version of this, perhaps a more risky one, but one that we argue is nevertheless important and productive. in the second part of the study, we briefly outline a conceptualisation of subjectivity as psychosocial before thickening this description in the context of childhood disability through its application to a reading of interview segments with a mother of a disabled child. we try to demonstrate how such a conceptualisation attempts to hold onto the gains of both more traditional psychological research and more critical social research without reducing each to one part of a causal relationship. it is hoped that in this regard the study contributes towards ongoing work to develop sufficiently complex and yet pragmatic analytic methods for qualitative research in childhood disability studies. in particular, we argue that the strength of the analytic approach that we outline lies in its aims to both understand and disrupt subjectivity. the social versus the psychological there has been much historical and contemporary theorising about the terms used to describe people with disabilities, emphasising the ways in which language is used for social and economic purposes. linton (2006) describes the medical origins of the term disability and documents the reassignment of meaning to this term by disability rights activists, policy makers and healthcare professionals in order to reinterpret disability as a political category. this research draws on the international classification of functioning, disability and health (who 2001) to define disability in children and therefore moves away from a sole emphasis on individual limitations to include a socio-political definition that emphasises ‘society’s unwillingness or inability to accommodate the needs of all citizens, irrespective of bodily difference or impairment’ (andrews, fourie & watson 2006:245). this social model of disability emphasises the assessment of the individual’s functioning within their physical, cultural and policy environments (mont 2007), viewing disability as based in unequal social relationships (connors & stalker 2007) because of barriers to ‘doing’ and ‘being’ placed on people with disabilities by non-disabled people. despite the strides made in conceptualising disability as ‘an experience that arises out of the interaction between a person with a health condition and the context in which they live’ (schneider 2006:8), too little has changed in relation to the discriminating environment that disabled people interact with. an interview study with 26 disabled children (with a variety of impairments) on their experiences of disability found that the children experienced disability in terms of impairment, difference, other people’s behaviour towards them and material barriers (connors & stalker 2007). moreover, maulik and darmstadt (2007) established in their review of available research that research conducted in lowand middle-income countries continue to use screening measures that do not take into account functional limitations or degree of service utilisation or impairment of role performances, rather the disability is diagnosed medically which does not take into account the social model of disability. furthermore, in a study of parents’ experiences, kearney and griffin (2001:587) emphasise the extent to which parents described the negative contribution of others to their experience of sorrow including professionals’ expressions of hopelessness highlighting that ‘developmental disability hold a multiplicity of negative meanings, resulting in society attitudes and practices that are dehumanizing’. it is clear from these selected research findings that the social model of disability still has a significant role to play in advocating for the rights of disabled people and in exposing the ableism so prevalent in society. nevertheless, for all the strengths of the social model, many of which still need to be realised in the south african context, the subjectivity of the disabled person tends to fall into the cracks between their impairment and their context. with the emphasis of the social model approach on discrimination and systematic exclusion, watermeyer (2009) draws attention to a danger within this model of conceptualising prejudice as a lack of knowledge, overlooking the emotional pay offs of discrimination. furthermore, such an emphasis has resulted in the subjectivities of disabled people and of caregivers of disabled children (the focus of this study) remaining relatively empty, ultimately contributing to the stereotypes that the social model of disability works so hard to challenge. in sharp contrast to this exclusively social emphasis, within developmental psychology and mental health more generally there has over the past decade been an explosion of attachment-based research and interventions. research has found that sensitive and responsive attunement by caregivers to infants’ and toddlers’ behaviours is associated with improved child development in non-disabled children (shonkoff & phillips 2000 cited in dunst 2007) and in disabled children (trivette 2003; trivette 2004; trivette & o’herin 2006 all cited in dunst 2007). this important finding has seen an increasing recognition of the importance of early interventions (0–5 years) for overall development and mental health, where early intervention is defined as the experiential opportunities provided infants and toddlers with disabilities by the children’s parents and other primary caregivers that are intended to promote the children’s behaviour competencies, shaping and influencing their prosocial interactions with people and objects (dunst 2007). significantly, this definition explicitly involves parents and other primary caregivers as children’s primary sources of learning and therefore interventions are directed at increasing parents’ capacity to provide their children with learning experiences as well as children’s capacities to engage with self-directed and self-initiated interactions with others and with their environment. the individual and relational emphasis of this approach is explicit and sharply distinct from the social model of disability. the sensitive and responsive attunement by caregivers that is being promoted in these early intervention programmes is based on attachment research, which is now well established, that identifies three patterns of attachment, namely secure, insecure and insecure ambivalent (ainsworth et al. 1978), which are associated with different developmental outcomes. according to howe (2006), children whose primary attachment relationship is classified as secure experience their caregiver as sensitively attuned in their caregiving, leading to greater social competence and more satisfactory relationships. by contrast, children whose primary attachment relationship is classified as insecure have been found to minimise affect in their relationships with others and develop hypervigilance, spending less time exploring their environments and more time monitoring their safety and security. making the relationship between child and caregiver central in childhood disability interventions is considered important because attachment research points to a number of factors that increase the risk of less secure attachments forming between parents and children with disabilities including the more demanding and potentially stressful nature of caregiving (howe 2006). mobarak et al. (2000) found 41.8% of mothers living in rural areas in bangladesh and caring for severely physically disabled children at risk for psychiatric morbidity. in particular, child behaviour problems (sleep problems, bed wetting, soiling and hyperactivity) were significant predictors of maternal stress. howe (2006:750) posits that ‘children in need of particularly sensitive caregiving might challenge the parents’ ability to provide such care’ partly because of facial, postural and vocal behaviour typical in infants with developmental delays that make it more difficult for caregivers to read their signals and needs and respond appropriately. from this attachment perspective, an explicit aim of early interventions for both non-disabled and disabled infants and their caregivers is therefore to support the parent–child relationship, and this is done by focusing on something called ‘mentalising’. mentalising is ‘attending to states of mind in oneself and others’ (allen 2006:3) and is associated with secure attachments that are in turn associated with social, emotional and cognitive benefits. more specifically, the aim of early interventions is to facilitate more secure attachments through increasing caregivers’ reflective functioning, which is defined as ‘an individual’s capacity to mentalise, that is, to envision mental states in the self o the other’ (slade 2007:641). certainly, such an approach recognises that it is not disability per se that predicts increased risk of maltreatment or insecure attachment. rather it is the interaction between firstly the state of mind of the caregiver and secondly the infant (both non-disabled and disabled) who brings something to the relationship (grumpy temperaments, a particular type of impairment) in terms of its capacity to activate heightened arousal in the caregiver that works against reflective functioning (howe 2006). however, the attachment approach’s emphasis on individual capacities and relational attunement narrows the focus of attention to inside the attachment context. ignoring relationships and environments outside of the attachment context elides the ways in which they are likely to create or shut down conditions of open attention and social safeness that facilitate mentalising (liotti & gilbert 2011), conditions that the social model of disability brings into sharp focus. while the attachment literature certainly takes as its focus the complex social interactions in which children and mothers must engage, a critique of the medical model of disability (mckenzie & muller 2006:313), the focus on increasing mothers’ capacities for reflective functioning nevertheless contributes to the message that ‘to have a disability (or to have a disabled child) is to be somehow incomplete and perpetually in need of help’. a psychosocial theoretical framework thus far we have outlined literature that either emphasises the social at the risk of emptying out the subjectivity of disabled people and their caregivers or emphasises relational and individual capacities of caregiver–child relationships at the risk of ignoring the broader social context, which provide the conditions for this relationship. such a division between inner and outer worlds fails to account for the complexity of lived experience, and such accounting is necessary to do justice to the qualitative data that we collect in our research as well as to the human experiences we encounter in our therapeutic work. an alternative to the social-psychological dualism described thus far lies in an emerging field of research called psychosocial studies, which argues that deconstructing social discourses to understand and challenge ableism only takes us part of the way. while applauding the social model for excavating the social, economic and political processes linked to discrimination against disabled children and their caregivers, a psychosocial approach is also concerned with the extent to which purely discursive explanations are limited by their inability to conceptualise disableism ‘in its least “signifiable” aspects’ (hook 2006:209). a psychosocial perspective, while not at odds with the critical realist perspective espoused by shakespeare (2006b), which conceptualises disability as the interaction between individual and structural factors, emphasises that this interaction is such that it is neither possible nor helpful to continue to think about individual factors as being in the person and structural factors as being outside the person. rather, inside and outside are two sides of the same coin; what one considers to be ‘outside’ can also conceivably be thought about as ‘inside’. the moebius strip, a surface with only one side and only one boundary, is frequently evoked as a metaphor for the way in which the psychological and the social are ‘underside and topside’ of the same thing (frosh & baraitser 2008:349). psychoanalysis, as a body of theory has been consistently drawn upon in psychosocial work with its emphasis on language and the construction of meaning through language as a point of continuity with discursive work. what psychoanalysis brings to discursive work is an emphasis on the affective realm and a rich vocabulary for capturing intersubjective encounters without limiting the analytic gaze to only what is said. rather, what is absent and yet structuring of the present is equally important in understanding subjectivity. psychoanalysis, with its emphasis on the unconscious as that which always hides and yet finds expression in some altered form (frosh 2002), has been an important way of addressing critiques of discursive work as devoid of the psychological so that one is left with ‘empty’ subjects that parrot social meanings. most importantly, the concept of the social unconscious (hopper 2003) is also what psychoanalysis brings to the picture, a complex concept described by hopper (2001, cited in weinberg 2007:311) as: the existence and constraints of social, cultural and communicational arrangements of which people are unaware. unaware, in so far as these arrangements are not perceived (not ‘known’), and if perceived not acknowledged (‘denied’), and if acknowledged, not taken as problematic (‘given’), and if taken as problematic, not considered with an optimal degree of detachment and objectivity. this position is not dissimilar to goodley’s (2011:716) reference to the ‘cultural and political foundations of the psyche’. in addition, one could argue that the social unconscious operates through the invisible labour referred to by kittay (2009:2) ‘done by people with disabilities and their families to allow those without disabilities to understand and interact with people with disabilities’. furthermore, the social unconscious can be seen to operate in the multiple ways that dependency work remains invisible while kittay (1998:127) argues ‘those who are unable to take advantage of new opportunities are blamed for their own distress’. it is these insidious, less visible and least signifiable aspects of our social worlds that require and resist our attention. for the purposes of this study, we draw on contemporary attachment theory (fonagy et al. 2002) as our psychoanalytic paradigm alongside discourse theory (potter & wetherell 1987) to conceptualise the psychosocial subject, with both paradigms sharing a concern with language or communication as the medium through which people compose themselves. it is essential to acknowledge at the outset that in the body of work that represents contemporary attachment theory, there are conservative pulls and therefore it is important to state that in this study we endeavour to reject the normative use of attachment theory and strive towards employing its more critical edge, which is frequently at its points of dialogue with psychoanalytic theory. (a discussion of the similarities and differences between contemporary attachment theory and psychoanalysis is beyond the scope of this paper, but see fonagy 2000). we are interested in the extent to which a contemporary attachment theoretical framework, in particular, is conducive to a rethinking of the subject–other relation, one that rejects an a priori division between inner and outer worlds outlined above and possibly allows for some ‘rehabilitation’ of the social model of disability. central to this endeavour is the concept of mentalisation, which is defined as a process of imaginative mental activity that involves perceiving and interpreting the intentional mental states of ourselves and of others (fonagy et al. 2002). this capacity to mentalise includes the ability to recognise the opacity of others’ minds, which is central to resisting stereotyping so prevalent in prejudice (twemlow & fonagy 2006; twemlow & sacco 2007). rather than being a cognitive rational concept, mentalisation is conceptualised as an intersubjective concept that evolves in the affective tie to others (diamond & marrone 2003). while this affective tie has been largely conceptualised at the level of the caregiver–child relationship, increasingly researchers have begun to recognise that a sense of security which facilitates mentalisation has sources outside of the attachment system (liotti & gilbert 2011) such that the socio-historical context/‘then and there’ (parker 2014) and the interpersonal context/‘here and now’ has been shown to facilitate and/or restrict the capacity to mentalise or the ability to hold the other in mind (fonagy & higgitt 2007). acknowledging the multiple contexts which might provide social safeness is very important because it reconceptualises mentalisation capacities as context dependent, as situated between persons and between persons and their contexts, rather than as a stable mental trait inside individuals’ heads (liotti & gilbert 2011). there is a further quality to mentalising that enables a critical use of contemporary attachment theory: the extent to which the opacity of the mind is upheld. an essential quality to holding someone’s mind in mind is recognising that one can never really know the other. in this regard, we might think of the social model as playing a significant role in upholding the opacity of the mind, as kittay (2011) argues that the role of the social model of disability is to force parents to see that they cannot see the world from their disabled children’s perspective. in this sense, mentalisation might be conceptualised as striving both to understand and disrupt. in mentalising, we think about our own and others’ states of mind in a way that increases meaningful connection and we also always allow the possibility for disjointedness, for being caught unawares by the other. it is the movement between understanding and disruption that allows the mind to retain its opacity and which gives mentalisation a quality that is not dissimilar to the dynamic unconscious. from this perspective, perhaps we are not entirely in agreement with shakespeare’s (2006b) rejection of the social model, while we recognise its constraints, we want to hold onto the interruptions it provides alongside attempts to interpret. in his argument against the social model, shakespeare (2006b) refers to its disregard for different levels of impairment and refers to vehmas’ (2006 cited in shakespeare 2006b) writing about steve, a man with severe intellectual impairment, a man who because of the degree of his impairment, would not benefit from initiatives like independent living, barrier removal or civil rights that the social model offers. while we do not disagree with shakespeare and vehmas regarding the level of impairment being an important consideration and with the claim that some impairments are more limiting than others, we do have questions about whether steve is unlikely to benefit from the social initiatives described, even if indirectly. kittay’s writing is informative here as she considers those who steve is dependent upon as central to how we think about steve. certainly, from kittay’s perspective, the kinds of initiatives described by vehmas embodied by the social model are likely to have an impact on steve’s dependency workers whether they be a paid caregiver or parent (kittay 2011). specifically, they are likely to provide these dependency workers with a sense that their dependency work is important, valued and part of a broader movement to increase the visibility of disability. there is a disruption that is provided for dependency workers that renders them more visible by association, even for a short while. to summarise, we have above been describing a psychosocial theoretical perspective from which to view subjectivity in disability studies. such a perspective attempts to blur the boundaries between the social and the psychic and argues that psychoanalysis can be usefully employed in this regard to see the ‘we’ and the ‘i’ as inseparably connected, as not joined together but as never individually conceived. we have extended this discussion with the concept of mentalisation as providing us with a means to both understand and disrupt ourselves and others in context. it is these opposing movements of understanding and disruption, or interpretation and interruption that the analysis below aims for in putting the concept of mentalisation to work. a psychosocial analysis: reading the encounter the methodological approach employed is binocular in its emphasis on both top-down interpretations, employing discourses and mentalisation as central theoretical concepts, alongside a bottom-up approach that grounds interpretations in the text (its content and structure) and in the research encounter (non-verbal aspects of the relational field, captured directly after the interview but also present in the analysis). such an approach has been conceptualised as a concentric reflexive approach (saville young & frosh 2010) consisting of multiple readings of the text and research encounter, with each reading stepping outside of the previous one in a concentric outward movement. such an approach recognises that one is always constrained by one’s perspective, and therefore argues that interpretations are necessarily tentative; we hope to understand and then to disrupt our understandings. for the purposes of this study, we would like to focus on a particular fairly lengthy extract, which is taken from an interview that jessie conducted as part of a broader research project on caregiving of disabled children. jessie is a white woman and at the time of conducting the research was a psychology student in her early twenties, and the participant, irene, is a white, non-disabled woman employed as a secretary, who is also a mother to a 13-month-old non-disabled daughter and a 6-year-old son with physical and developmental disabilities. the following extract has been chosen for its emotional content in particular pointing to active meaning making on behalf of both irene and jessie: j: ‘what about other sorts of stress, you’ve mentioned that you’re worried about losing your job.’ i: ‘ya um i take him to therapy once a week and my bosses are getting a bit tired (j: mm) of me taking time off ‘cause i’m a receptionist and i can’t really take time off but i’ve got an understanding boss, they’ve both got kids (mm) so it’s just one day they might have enough, say look you can’t do this anymore, thank you goodbye (mm) basically what i’m stressing about at the moment ‘cause we’ve got to take him to pe in october for an eye op and well eye test (mm) and see the paediatrician (…) and that’s also a bit stressing me out at the moment, we don’t know what the eye doctor will say about his eyes that the main because he does have a bit of a squint (okay) (…)’ j: ‘sorry i was going to ask you something and it totally slipped my mind now (embarrassed, flustered). so how do you deal with that stress?’ i: ‘(…) i shout, get very frustrated and i take it out on the people closest to me (…) which i shouldn’t, i should rather step away from the situation, go for a walk (mm) but instead of that i take it out on the people nearest and dearest to me (…)’ j: ‘i’m sure that makes everything a lot more complicated.’ i: ‘yes, a lot more difficult so i shouldn’t, should rather try and be calm (mhmm) instead of shouting and (…)’ j: ‘but that’s hard sometimes.’ i: ‘it is hard sometimes but i’m getting there (…)’ j: ‘(…) sorry i just think we’ve gone through everything quite quickly (…) is there anything that you’d like to add?’ i: ‘no, nothing at the moment, i’m just grateful for people that reach out to us (mm) that are there so that we’re not alone because that’s how i feel (…) alone, i might have that support group but i still feel alone, still feel that (…) why me, why do i have to get through this (very emotional, she starts crying) (oh no, don’t worry) (…) we love james (ya) but we had so many dreams and aspirations for him and now we’ve got to have different dreams, different aspirations for him, different different life than catherine for instance (mm) i feel guilty that she is perfect, nothing wrong with her and look at james, why what does things like this happen to us (…) (mm) we’ll never know (…)’ j: ‘are you religious at all?’ i: ‘yes very, i’m very involved in my church and (..) i’ve asked questions but i’m still waiting for answers (mm) some answers have been, some questions have been answered but there’s just a few questions that we’re still waiting to hear the answer for.’ j: ‘like what kinds of questions?’ i: ‘um (…) research, would there be any, could they do any research to find out what caused what causes autism (ya) why is there such a thing as autism, why are the numbers so high it’s and you read books and eventually you get to a certain page in the book and you just close the book and you put it away because you don’t want to read anymore, it gets you more anxious, more upset (mm) more cross that you could’ve maybe prevented it, what went wrong (…).’ the first level of analysis concerns the discursive positions that are taken up and resisted in the text. we are interested in how discourses define and limit what can and cannot be said, not only because these are disallowed by dominant shared meanings of motherhood and disability but also because they are disavowed at a societal level. this reading is in line with a deconstructionist, disruptive stance not incompatible with the social model of disability (for further reading on this analytic stance, see saville young 2014). in this extract, we see irene draw on a medical discourse, prominent throughout her interview, firstly in her listing of tests and specialists and impairments associated with james (l. 7–10), and secondly in her appeal to research to answer questions and provide expertise (l. 37–39). this medical discourse constructs james as an ill patient with various parts of himself that are dysfunctional (his eyes, his mind) requiring treatment by experts. this medical discourse is fed into by a discourse of perfection which is drawn on to construct her daughter as a non-disabled child in contrast to james (l. 29–30). the effect is a smoothing over of the struggles and difficulties of non-disabled children such that what is difficult and hard belongs entirely and fully with disabled children like james contributing to a stereotyped, one-dimensional view of disabled subjectivity. one could argue from this perspective that irene’s feelings of guilt (l. 29) are constructions produced by the effect of these two discourses, which suggest that something has gone very particularly wrong with james and therefore disability is blameworthy. locating these effects in an emotional state can be seen to contribute to an individualisation of motherhood (as something that individuals do well or do not do well) and by extension of disability. the moral judgement synonymous with this individualisation of maternity is further read out in irene’s description of herself as getting ‘very frustrated … which i shouldn’t’ (l. 13). while the text has moments of irene being somewhat kinder to herself [‘but i’m getting there’ (l. 20)] and to james [‘we’ve got to have different dreams, different aspirations’ (l. 28–29)], these are in effect simply positive versions of disability and caregiving within the same framework. therefore, they work to validate the individualised moral framework rather than resist it. a discourse of loss is prominent in the text constructing irene as giving up the position of being a mother with ‘dreams and aspirations’ (l. 28) for her son, taking up a position of difference (l. 28–29). her description of having ‘had so much dreams and aspirations for him’ (l. 27–28) construct herself as being duped into a sense of normality, only to have it taken from her and replaced with difference. the narrated experience here is one of loss that is built on an ideology of the knowledgeable or knowing mother particularly prevalent in contemporary society where parenting books and classes abound. against this particularly oppressive mothering ideology (see ryan & runswick-cole 2008) that maintains the notion that perfect babies and children can be made through knowledgeable parenting, irene, as the mother of a disabled child is constructed as unknowing, left asking ‘why, what, does things like this happen to us … we’ll never know’ (l. 30–31). the above discursive reading points to the work that a social model of disability is called on to do – to challenge the location of disability in the individual, as well as the construction of disability as quite separate from the non-disabled experience. however, it is important not only to pay attention to how the role of disabling society is disallowed through such talk but also to how it is disavowed – it is not just absent, rather its presence is actively resisted. from this perspective, we see how irene has an ‘understanding boss’ (l. 5) and that the difficulty she finds herself in (located in personal stress) is not because of these bosses who are parents themselves but in the perfectly reasonable position that receptionists cannot take time off work (l. 4). the insidious way in which ‘dependency work’ (kittay 1998) is rendered invisible elides its resistance to being known. we now move to the second tier of analysis in which we move to understand irene’s emotional investments in the construction of ‘not knowing’ specifically. in doing so, we draw attention away from socially shared discourses to a thinking through the emotional pay offs or the conscious and unconscious ‘reasons’ for their employment in order to not lose sight of irene, a particular mother of a particular disabled child. in the extract above, irene describes the ambivalence of wanting to know the cause of autism, of ‘waiting’ (l. 34) to ‘hear the answer’ (l. 35) and also not wanting to know the cause ‘you just close the book and you put it away’ (l. 40). this could be read symbolically as a defensive denial of her own sense of guilt in relation to james. we might understand that irene, while frustrated with not knowing, is also at the same time invested in not knowing because she does not want to really know or face her own sense of being responsible (earlier in the interview she makes reference to only going to the doctor when she was 6 months pregnant). employing the concept of mentalizstion, we might argue that irene’s stance above represents an anti-mentalising stance. she does not want to know her own mind, which already is certain of her own culpability. the problem with this reading is that it psychologises irene, the analysis itself contributes to the individualising medical and moral discourse that the discursive reading was so critical of. rather than employing a mentalising or non-mentalising capacity internally located in irene, we want to argue that specific affective processes enable irene’s investment in this position of not knowing, in this anti-mentalising stance and that these affective processes do not belong to irene but are rooted in this particular intersubjective exchange (‘here and now’) and the particular socio-history context (‘then and there’) in which she finds herself. in order to do this, we turn to the symbolic, emotional and enactive representations specific to the particular interpersonal encounter of the research interview; we locate the text in its research context in a reflexive disruptive move. to capture these representations, the interviewer, jessie, wrote a narrative that detailed her feelings and thoughts about the interview with irene, those that arose during the interview as well as those that have arisen subsequently. this narrative formed part of the data and informed the analysis. however, it is important to acknowledge that, while these representations are certainly grounded in the text, they are also part of the reconstruction by the interviewer and therefore reflect her subjective experience of the encounter, thus embracing the psychoanalytic notion of understanding as depending on ‘the subjective exploration of one person by another’ (frosh & saville young 2008:115). a significant aspect of these reflexive notes was jessie’s experience of losing her own mind. jessie describes in her notes struggling to hold onto her thoughts during the interview. these feelings are reflected in the data as she forgets and questions slip from her mind (l. 11 and l. 22). part of this struggle was rooted in the heavy emotional quality of the interview, which was punctuated by lengthy silences from irene which jessie experienced as highly defensive – as if irene felt the need to protect herself from the interview questions, perhaps again not really wanting to know what was in her own mind. but part of this struggle may also be rooted in jessie’s own investment in not wanting to really know irene as a holistic and multi-dimensional mother, but rather already feeling pity and anguish for her in a stereotypical view of a mother of a disabled child that fails to acknowledge the positive experiences of being a parent of a child with a disability (see kearney & griffin 2001). this interpretation of the ‘here and now’ is underscored by a further interpersonal process, which sees jessie introduce religion into the conversation (l. 32). on the one hand, this could be read as jessie introducing a stereotypical view of mothers of disabled children as saints (james 2012). this religious model of disability echoes the sentiment that god chooses which mother will have which child (bombeck cited in james 2012), suggesting that it is the mother’s individual characteristics that determine her ability to care for a disabled child. on the other hand, we might read into this introduction of religion as belying jessie’s difficulty in managing her own anxiety, faced with irene’s narrative of struggling to mother her disabled son. it is almost as if jessie is calling on religion to help her in this particular situation in ways that disabled people, and in this case mothers of disabled children, are very used to having to manage. in ways that have been documented by watermeyer and swartz (2008:601) in relation to the experience of disabled people and referred to as a ‘disguising of experience’ and a ‘dampening down of authentic responses’, similarly irene can be seen throughout the interview to try to be appeasing and untroublesome [‘i’m getting there’,(l. 20) and ‘i’m grateful to people that reach out to us’ (l. 24)]. drawing attention to these processes occurring in and around jessie and irene is not meant to berate jessie for her prejudice but rather to point to the common ways in which the emotional work we engage in to understand and empathise, given the anxiety-provoking nature of this work, can in effect restrain our empathic ability. from this perspective, we are arguing that jessie is holding irene in mind in a particular way: as someone who is deserving of pity (needs godly help) and/or as a ‘saint’; she is not curious about who she is but seems to already have pinned her down from outside. importantly, this can be understood as not necessarily only belonging to jessie but rather as reflecting an unconscious historical group identity of ableism (‘there and then’), which represents a fantasy of mastery, completeness and perfection that is so dependent on the projection of loss onto others (watermeyer 2009). the principle of mentalising begets mentalising is here worked out in the negative; this reading draws attention to jessie as a bystander (outside of irene and james’ relationship in which we might interpret her as adopting an anti-mentalising stance) but nevertheless actively fuelling the way in which irene is not able to hold james in mind through her inability to attend to her own mind and that of irene’s with a quality of openness. this interpretation resists placing the emotional investment in the discourse of ‘not knowing’ within irene’s psyche; rather, the analysis seeks to understand investments as always already belonging in, around, between and outside irene. this draws attention to the dynamic and shifting nature of irene’s subjectivity, to her capacity to mentalise potentially waxing and waning in relation to the container, which bion (1985) conceptualised as needing to take up and absorb the consequences of raw emotional experience. this view of her maternal subjectivity is significantly not fixed, nor is it entirely dependent on her inner capacities. the final tier of analysis is to think about what the reading thus far does – what does it produce – and also by what the analysis is constrained. this final tier tries again to capture the analytic emphasis on understanding and then disrupting. with respect to how it moves our understanding along, the above reading challenges notions described by james (2012) that construct mothers of disabled children as saints, rather irene’s narrative points to someone who struggles with mothering her disabled child. while not always comfortable, drawing attention to these moments is important in order to present mothers of disabled children as subjects with complex and ambiguous feelings that dynamically shift throughout the interview from acceptance to non-acceptance, from loving to rejecting. in this way, irene begins to resemble more critical depictions of all mothers as both selfish and selfless (james 2012), resulting in a multi-dimensional subjectivity that is holistic and constantly in flux. therefore, the above reading contributes to work on maternal subjectivity within disability studies challenging idealistic accounts of mothering, encouraging diversity in relation to the maternal position with an emphasis on the dynamics of mothering as opposed to a constant status and with an emphasis on local manifestations of mothering as opposed to universalising tropes. however, perhaps the analysis is constrained by its use of mentalisation in a conservative pull that we need to be mindful of, a pull that might suggest that jessie could have conducted the interview ‘better’. specifically, we want to argue that it is important to recognise the inevitability of jessie’s position in the encounter above. this inevitability of the researcher’s position seems to be unacknowledged in many of the mentalisation interventions aimed at supporting mothers of infants, both non-disabled and disabled, to mentalise (e.g. sadler, slade & mayes 2006). there is a tendency in this interventionist work to take the clinician out of the encounter, to disregard the atmosphere of observation that she or he is contributing to which in turn facilitates or shuts down potentialities for mentalising. research suggests that these interventions are highly successful (see sadler et al. 2013), and we do not want to disregard this important work. nevertheless, what is often missing is the social perspective, represented by the clinician who despite his/her best intentions will not be able to eradicate their prejudice, being on the side of the intervention, exemplified in their reaching for a secure attachment between caregiver and child. in doing so, there is a danger of not being able to recognise ‘the unbearable knowledge’ (frosh 2011:235) that we are always, inevitably and to some extent, contributors to insecurity and that the best we can do is attempt to step outside of ourselves to disrupt what we think we know. this final tier of analysis asks whether attachment theory, with its recent proliferation of measurements of reflective functioning and interventions, is able to tolerate our hateful feelings towards our (disabled and non-disabled) children and their mothers to promote an environment of inclusion. reprise the reading above draws attention to discourses that position irene and her children in particular ways while also pointing to investments in these discourses such that these discourses are not purely social but play affective functions. significantly, our reading places these affective functions between and around irene and the interviewer; they move through these spaces in ways that are both revealing and resistive to being known. we use multiple lenses to read the text, seeking to understand what is going on from within each lens (discursive/social, interpersonal, intrapsychic), while also seeking to disrupt this understanding as we take up the position of a different lens. the concept of mentalisation is employed throughout in different ways – always seeking to both understand and hold onto the impossibility of doing so. while this study has chiefly been concerned with conceptualising a psychosocial conceptualisation of subjectivity that employs discursive psychology alongside contemporary attachment theory and putting this to work methodologically, this study has also given voice to irene in a particular context. there is a concern that retelling difficult stories such as that of irene plays into a voyeuristic interest in tragic stories of disability (goodley & runswick-cole 2013), which must be acknowledged while holding onto the importance of giving a voice to narratives of mothers of disabled children whose dependency work is so often invisible (kittay 1998) in order to unsettle taken-for-granted notions of mothering and disability. in the same way as shakespeare (2006b) in his book, ‘disability rights and wrongs’, critiques the social model of disability for failing to adequately account for the pain and limitation of impairments, so we must be careful of idealising caregivers and dependency work, being sure to look at things that are hard to look at. irene provides us with this opportunity. struggling with the impairments of one’s children is an important aspect of caregivers’ lives. in order to integrate them, they must be acknowledged but they must also not be located solely in these mothers – we hope that our analysis goes someway to highlight the ways in which irene’s story both does and does not belong to her. drawing attention to the inextricability of the personal and the social such that what is ‘in the mind’ can only be thought under particular circumstances reminds us all that in our personal meditations, interpersonal interactions and social endeavours to remain committed to challenging disabling ways of robbing mothers of disabled children of the complexity and locatedness of their maternal subjectivity. acknowledgements the authors are grateful to leslie swartz, brian watermeyer and judith mckenzie for their comments on an oral presentation of this work for the disability studies programme at the university of cape town. travel to cape town to present the paper was made possible by the national research foundation (nrf). opinions expressed and conclusions arrived at are those of the authors and are not 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health sciences education, faculty of health sciences, university of cape town, cape town, south africa citation mashamba, s.r., mahomed, s. & van wyk, j.m., 2024, ‘infection control in schools for learners with spina bifida: a scoping review’, african journal of disability 13(0), a1394. https://doi.org/10.4102/ajod.v13i0.1394 review article infection control in schools for learners with spina bifida: a scoping review sasavona r. mashamba, saajida mahomed, jacqueline m. van wyk received: 20 dec. 2023; accepted: 04 july 2024; published: 09 aug. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite the widespread prevalence of spina bifida and its impact on individual learners, there is limited information on how infection control is managed in the school environment. objective: this scoping review was conducted to map the evidence on infection control programmes at schools for learners with spina bifida (lsb) globally. methods: this review followed the joanna briggs institute methodology for the scoping review. a database search was conducted on an internet browser search on medline, pubmed, ebscohost, google scholar, eric and google search engines. results: a total of five articles met the inclusion criteria. most of the schools in the study did not have special facilities or running water to accommodate basic infection control procedures. conclusion: collaboration between policymakers, specialists of spina bifida and infection control in the health sector, the association of spina bifida, specialists in spina bifida under the department of education and researchers is needed to improve the lives of lsb through infection control. contribution: the study will contribute to the improvement of training of staff working with lsb and the need for more research. keywords: spina bifida; learners; schools; infection control programme; guidelines. introduction spina bifida (sb) is a neural tube defect and congenital abnormality in which the spinal cord and vertebrae do not form completely, resulting in abnormality during the development of the neural tube (bannink, idro & van hove 2016b; sandler 2004). the neural tube usually closes by the fourth week of pregnancy. in sb, the neural tube does not close completely and leaves the baby’s delicate spine open to possible injury (wisconsin 2019). this results in permanent damage to the spinal cord and the nervous system and can result in paralysis of the lower limbs or problems with bowel and bladder function (world health organization [who] 2012). the three most common presentations of sb include myelomeningocele, meningocele and spina bifida occult (centers for disease 2020). about 80%–90% of babies with sb also develop hydrocephalus, a condition that causes a fluid build-up inside the head causing an increase in pressure which leads to the skull expanding to larger-than-normal size (who 2012). learners with spina bifida (lsb) face many challenges in resource-scarce countries; most lack access to surgery or help to manage their ongoing disability and symptoms (shaer, chescheir & schulkin 2007). the majority have some degree of paralysis, which affects their mobility, bowel and bladder control (northrup & volcik 2000). almost all individuals with sb have some degree of bladder and bowel dysfunction because the low sacral nerves that innervate the distal bowel, anal sphincter, bladder, and internal and external bladder sphincters are affected (shaer 1997). approximately 70% of all lsb will require some form of drug therapy to control an overactive bladder and they will have to practice clean intermittent catheterisation on a lifelong basis (nordqvist 2014). infections associated with sb often interfere with regular school attendance of lsb (potter patty & zabel 2009). these infections include infection of the urinary tract that results from bladder paralysis, and wound infection because of a lack of protective pain sensation (swaroop & dias 2009). the frequency of such infections means that almost all lsb require lifelong antibiotic treatment to prevent infection (nordqvist 2014). successful integration of a child with sb into the school environment requires attention to various aspects including the physical structure, architecture of the school building, the availability of support and the curriculum (spina bifida association 2015). learners with myelomeningocele need to learn mobility skills and often require the aid of crutches, braces and wheelchairs (spina bifida association 2015). learners may require assistance from specialised caregivers including classroom assistants, resource teachers and school nurses to support them in the school environment (governey, culligan & leonard 2014). it is, thus, necessary that lsb are managed in a comprehensive manner and with help and support from a multidisciplinary team (uehara 2002, spina bifida association 2018). schools for lsb are advised to implement infection control programmes to manage infections among learners. implementing such programmes can also improve the quality of life for learners by reducing infection. the success of such a programme varies depending on the context, policy, type of schools, beliefs and attitudes of staff, and how they implement the programme in their setting. despite the widespread prevalence of sb and its impact on individual learners, there is limited information on infection control in the school environment to manage the disease. this scoping review was conducted to map the evidence on infection control programmes at schools for lsb globally. materials and methods given the lack of information on this topic, a scoping review was regarded as the most appropriate strategy to map global evidence on infection control for lsb in a school setting. a scoping review protocol was developed before the review, but it was not registered. this review was guided by a reporting guideline for systematic reviews (prisma extension for scoping reviews) (tricco et al. 2018). the review followed the joanna briggs institute methodological approach for scoping reviews (peters et al. 2015) and includes eight key steps: identifying the research question. identifying relevant studies. study selection. charting the data. collating, summarising and reporting the results. analysis of the evidence. presentation of results. summarising the evidence, reviewing and making a conclusion on the findings. identifying the overall research question this review was conducted to map the global evidence on infection control programmes at schools for lsb. the following research objectives were formulated to guide the review: what types of schools accommodate lsb? what obstacles do lsb face in accessing infection control measures within school settings? what programmes or guidelines inform how infection control is practised at schools for lsb? what is reported about the knowledge, attitudes and practices of staff working at schools that accommodate lsb? identifying relevant studies the search strategy was informed and guided by the pcc (population, concept and context) framework (peters et al. 2017). p – population: lsb from 5 to 25 years of age. c – concept: infection control programmes in schools. c – context: international or globally. eligibility criteria were established before the study and guided the selection and screening process (table 1). table 1: inclusion and exclusion criteria. search strategy searches conducted on medline, pubmed, ebsco host, google scholar and eric identified 148 articles on the topic. a search conducted by google search engine found 55 articles. google scholar and google search engine were searched separately. google translate was used to translate non-english articles. duplicates were removed and 99 articles remained which were included in abstract screening. after screening the abstracts, five articles were found to be eligible for inclusion in full article screening (figure 1). figure 1: prisma flow chart showing literature search and selection of studies. searching the literature for eligible articles consisted of two stages. the first search was conducted in may 2020 for studies published from 2000 to 2020. the following search terms were used: infection control, spina bifida, available schools, infection programmes and guidelines. the searches were conducted in google scholar, ebsco host, pubmed, eric and medline. a second search was conducted because the first search did not yield sufficient results. the search was conducted in october 2020. the search strategy was piloted on pubmed, google scholar, ebsco host, pubmed, eric and medline using the following search terms: (‘spinal dysraphism’[mesh terms (medical subject headings terms were used and included to identify studies relevant to the topic) or (‘spinal’[all fields] and ‘dysraphism’[all fields]) or ‘spinal dysraphism’[all fields] or (‘spina’[all fields] and ‘bifida’[all fields]) or ‘spina bifida’[all fields]) and (‘child’[mesh terms] or ‘child’[all fields] or ‘learners’[all fields]) and (‘schools’[mesh terms] or ‘schools’[all fields] or ‘school’[all fields]) and (‘infections’[mesh terms] or ‘infections’[all fields] or ‘infection’[all fields]) and (‘communicable diseases’[mesh terms] or (‘communicable’[all fields] and ‘diseases’[all fields]) or ‘communicable diseases’[all fields] or (‘infectious’[all fields] and ‘disease’[all fields]) or ‘infectious disease’[all fields]) and (‘prevention and control’[subheading] or (‘prevention’[all fields] and ‘control’[all fields]) or ‘prevention and control’[all fields] or ‘control’[all fields] or programme[all fields] and (‘guideline’[all fields] or ‘guidelines as topic’[mesh terms] or ‘guideline’[all fields]) or ‘measures’[all fields]) or ‘measure’[all fields]). study selection titles were screened using the following key terms: learners or school-going lsb or spinal dysraphism, special needs, physical disabilities, infection control, management, prevention programme, measures, staffing, personnel, support staff, infrastructure, schools, centres for learning, facilities, placements, guidelines, recommendations, schools for lsb, management of sb and spinal dysraphism at school, guidelines for the management of sb and infection control for lsb and dysraphism and school personnel for lsb. the results from the database searches were exported into a single library in an endnote x9 reference manager programme. the selection of articles incorporated two stages: the first stage involved screening all titles and abstracts generated on the searches by two authors independently. all eligible articles were retained by applying the inclusion and exclusion criteria as detailed earlier in the text. in the second stage, the full texts of all eligible articles were reviewed by the same two authors to determine whether the article should be included in the study. any disagreements between the first two reviewers were discussed and where necessary, resolved by the third reviewer. charting data if an article was eligible for inclusion, details about the study itself were charted; including author and date, the title of the study, publication, aims of the study, study setting, study population, sampling method, study design, data collection methods, data analysis and the most relevant findings in response to the research questions. the extracted data were then entered into a microsoft excel spreadsheet. collating, summarising and reporting the results the findings were gathered and summarised, and an explanation of data extracted from the included studies was analysed using content analysis. analysis of the evidence the findings were analysed to answer the research questions and address the purpose of the review. the synthesis of results consisted of quantitative analysis (e.g. frequency analysis) of the scoping review, conduct (i.e. methodological steps), and qualitative analysis (i.e. content analysis) of the components of the research purpose. for the qualitative analysis, an excel spreadsheet was developed in which relevant findings were categorised. a narrative synthesis was performed to map data on infection control for lsb. ethical considerations an application for full ethical approval was made to the the university of kwazulu-natal biomedical research ethics committee and ethics consent was received on 31 october 2019. the ethics approval number is brec/00000854/2019. presentation of results the included studies provided feedback on each of the research objectives: types of schools accommodating lsb, obstacles faced by lsb in accessing infection control measures within the school settings, report on infection control policy, guidelines and procedures for schools accommodating lsb, report about knowledge, attitudes and practices of staff working at schools accommodating lsb. characteristics of included studies three of the five studies were conducted in low-middle-income countries, two from uganda (bannink, idro & van hove 2016a; bannink et al. 2016b) and one from india (mathew 2006). the remaining two studies were conducted in the united states of america (usa) (katrancha 2008) and ireland (governey et al. 2014). the studies used qualitative (bannink et al. 2016b, katrancha 2008), descriptive quantitative (mathew 2006) and mixed methods (bannink et al. 2016a; governey et al. 2014) research designs (table 2). table 2: characteristics of included studies. collating, summarising and reporting the results types of schools accommodating learners with spina bifida all the included studies reported on schools for lsb (see table 3). learners were attending private or mainstream pre-primary, primary or secondary schools; some were enrolled in special schools (bannink et al. 2016a, 2016b; governey et al. 2014; katrancha 2008; mathew 2006). in the study from india, 11 (36%) lsb were accommodated in mainstream primary schools, three (10%) in middle school, one (3.3%) in high school and one (3.3%) in a special school (mathew 2006). while in the usa, lsb attended mainstream pre-primary schools (katrancha 2008), 89% of lsb in ireland attended mainstream schools (18 learners in preschool, 47 in primary school and 14 in secondary school), nine (10%) learners attended special education and one learner (1%) was home-schooled (governey et al. 2014). some reports included learners who attended public schools that offered special education (governey et al. 2014). five were at the pre-primary school level, and four each were enrolled at primary school and high school levels. the mean age of the learners was 7 years with a range from 2.4 years to 16.3 years (governey et al. 2014). in contrast, in the study conducted in uganda, 26 (63%) lsb were attending private nursery schools, 11 (26.8%) were in private primary schools and 4 (9.7%) were in private secondary schools (bannink et al. 2016b). in another study conducted in uganda, 50 (36.8%) were in private nursery schools, 22 (16.2%) were in private primary schools and four (2.9%) were in private secondary schools (bannink et al. 2016a). their ages ranged from 4 to 14 years (bannink et al. 2016a). the number of pupils per class in private schools varied between 28 and 69 learners (bannink et al. 2016b). the number of learners per class was not reported in the study from ireland (governey et al. 2014). table 3: type of schools for learners with spina bifida. obstacles faced by learners with spina bifida in accessing infection control measures within school settings the studies from uganda, india and ireland reveal significant obstacles faced by lsb in accessing infection control programmes in school settings as well as accessing education (bannink et al. 2016a, 2016b; governey et al. 2014; mathew 2006). in uganda, a mere 65% of the lsb study population attended school (bannink et al. 2016a), with many dropping out because of peer bullying, lack of income and societal stigma (bannink et al. 2016a). wheelchair inaccessibility, absence of continence management programmes and inadequate facilities resulted in the exclusion of lsb from schools (bannink et al. 2016b). in india, 60% of lsb attended school, but challenges persisted. inadequate water and toilet facilities affected catheterisation practices, highlighting infrastructure deficiencies (mathew 2006). ireland demonstrated a higher attendance rate (89%), emphasising regional variations (governey et al. 2014). however, across uganda, india and ireland, physical and logistical challenges in accessing school facilities were consistent (bannink et al. 2016b; governey et al. 2014; mathew 2006. in ireland, access to mainstream schooling for lsb depended on support for their physical and toilet needs (governey et al. 2014). physical access to schools was generally poor, particularly in uganda, where classrooms, playgrounds, toilets and changing areas posed difficulties (bannink et al. 2016b). wheelchair access, especially during the rainy season, and the lack of functional ramps further restricted mobility (bannink et al. 2016b). additionally, lsb lacked access to essential facilities such as libraries and sports fields. boarding facilities in uganda also lacked wheelchair access, with no bathroom access for lsb (bannink et al. 2016b). furthermore, the unhygienic nature of communal school toilets in uganda made practising intermittent catheterisation challenging (bannink et al. 2016b). only a few schools provided library facilities; the study highlighted the overall inadequate space and hygiene for practising essential medical procedures (bannink et al. 2016b). while some schools allowed lsb access to staff toilets (bannink et al. 2016b), the broader infrastructure challenges underscored the pervasive difficulties faced by lsb in realising their right to education and healthcare. these findings emphasise the urgent need for inclusive policies, improved infrastructure and societal awareness to overcome the substantial barriers impeding the education and well-being of lsb. infection control policy, guidelines and procedures within the schools two of the studies reported on the presence of policies for physical access and inclusion of lsb, but the policies were not implemented (bannink et al. 2016b; governey et al. 2014). in ireland, governey et al. reported that the united nations convention on the rights of people with disabilities set by the united nations (training guide 2014) stated that all countries should provide full access to school facilities to learners with disabilities and ensure that they have full enjoyment of their rights (governey et al. 2014). parents, however, raised concerns about the services provided to their children such as poor physical access and exclusion from the school environment (governey et al. 2014). in uganda, teachers reported that their schools followed the regulations and curriculum of the inclusive education policies, set by the government of uganda (uganda 2015), which regulated schools for learners with disabilities (bannink et al. 2016b). despite these regulations, teachers reported difficulties for lsb to participate in classroom activities because of a lack of access to buildings, large student numbers, limited resources and teaching material (bannink et al. 2016b). in the usa, katrancha reported on guidelines for clean intermittent catheterisation in the school setting (katrancha 2008). the guidelines recommend that clean intermittent catheterisation be performed four times daily, twice during the school day and in a private place (katrancha 2008). the first procedure should be undertaken mid-morning and the second mid-afternoon (katrancha 2008). class teachers need to coordinate specific times to minimise the loss of instructional time (katrancha 2008). the guidelines stipulate that the equipment to practice clean intermittent catheterisation includes a sink for handwashing, catheters, lubricant, alcohol-free wipes or washcloths, a handheld mirror, a container, or toilet to catch urine, mild liquid soap to wash the catheter, a syringe for flushing the catheter and container to store the catheter (katrancha 2008). knowledge of staff working at the schools for learners with spina bifida two of the five studies reported that teachers did not offer diversified teaching (bannink et al. 2016a, 2016b). one of the five studies reported on meetings with parents to discuss individual education plans and the financial burden of using incontinence products (katrancha 2008). a study conducted in the usa reported on the mother of an lsb who had a meeting with a school nurse, guidance counsellor, classroom teacher and special education supervisor to update her on the individual education plan and obtain more information about the learners’ health status (katrancha 2008). the school nurse also discussed the development of and the need for independence with the mother (katrancha 2008). in addition, the school nurse assisted the mother in devising a plan for clean intermittent catheter programmes (katrancha 2008). attitudes of staff employed at the schools for learners with spina bifida some teachers in the ugandan study were unwilling to assist lsb (bannink et al. 2016b). the study reported that lsb were bullied by other learners and that teachers did little to address the bullying (bannink et al. 2016b). teachers in private schools felt that parents should remove lsb from school (bannink et al. 2016b). only half of the teachers believed that it was part of their responsibility to prevent an lsb from being bullied in class, while others believed it was the responsibility of the school management and parents to deal with bullying behaviour (bannink et al. 2016b). some teachers blamed the parents for enrolling a learner who was unable to walk and who had no wheelchair (bannink et al. 2016b). learners with spina bifida were then teased when they had to crawl to get around (bannink et al. 2016b). the teachers mostly thought it was the learners themselves or their parents’ responsibility to perform clean intermittent catheterisation even in the school environment (bannink et al. 2016b). in some schools, the teacher or a nurse did, however, assist the learners with clean intermittent catheterisation (bannink et al. 2016b). practices of staff working at the schools for learners with spina bifida two of the five studies reported on incontinence in ireland and uganda (bannink et al. 2016b; governey et al. 2014). catheterisation and toileting were often provided by a special needs assistant or, occasionally, by a parent (governey et al. 2014). in uganda, while parents usually assisted learners with toileting, some teachers or nurses were also reported to have assisted (bannink et al. 2016b). teachers reported that the mothers of some of the learners who were incontinent came to the school to help with their toilet needs (bannink et al. 2016b). however, the mothers sometimes arrived too late which caused accidents and urine leakage causing other learners to complain (bannink et al. 2016b). in one of the studies where the teachers lacked teaching assistants, other learners were asked to help lsb in the classroom setting (bannink et al. 2016b). the tasks performed by the peers included helping them leave the classroom or copying notes where their writing was difficult, or slow or where they had missed classes for medical reasons (bannink et al. 2016b). learners with spina bifida were never asked to help other learners in class (bannink et al. 2016b). summarising the evidence and concluding remarks a significant strength of this review was the comprehensive and systematic searches of five databases for published literature on school facilities for lsb, recommendations on infection control in the schools, availability of infection control programmes in the school, availability of human resources and infrastructure to manage lsb, and training for teachers, care workers and professionals caring for or teaching lsb. we believe that all relevant information has been included. most of the studies used descriptive and or mixed-method study designs. most studies were conducted in low-middle-income countries, and relatively few studies were conducted in the usa. theme 1 although the studies reported on the studies for physical access and inclusion of lsb, none of the publications discussed widespread adherence to such policies or guidelines. for example, none reported on the ratio of students to teachers that should be applied in schools for lsb. most reports included initiatives by parents who arranged for intermittent catheterisation themselves (bannink et al. 2016b; governey et al. 2014). the findings from a study at primary and secondary mainstream schools in the united kingdom suggest that staff are uncertain about their roles and responsibilities and lack appropriate training and support to perform healthcare roles (mukherjee, lightfoot & sloper 2000). it is important to ensure that all stakeholders involved in the education and care of lsb are well-trained and have the relevant resources to achieve academic success (wairimu 2018). most schools did not have special facilities, or running water to accommodate basic infection control procedures (bannink et al. 2016a, 2016b; governey et al. 2014; mathew 2006). only one school allowed learners to use the teachers’ bathroom (bannink et al. 2016b). one study in the usa mentioned the existence of guidelines for clean intermittent catheterisation performed with the assistance of a nurse (katrancha 2008). the other three studies that mentioned infection control in ireland and uganda did not mention any guidelines that were followed to practice infection control (bannink et al. 2016a, 2016b; governey et al. 2014). none of the studies mentioned policies on infection control for lsb in the school setting. another study noted that guidelines for healthcare procedures in schools are intended to enhance the educational experiences of learners with healthcare needs by guiding school nurses, teachers and other staff (southhall 2017). policymakers should collaborate with specialists of sb in the health sector, researchers and the association for spina bifida to develop guidelines recommendations, and policies for infection control for lsb in the school setting and ensure that they are implemented and monitored. theme 2 only one study mentioned the presence of a nurse (katrancha 2008) and none of the studies mentioned additional training or support for teachers to address coping with an lsb in their classroom. the study conducted in the usa has shown that school-based nursing support helps to build self-esteem and allows lsb greater independence at school (katrancha 2008). much of the assistance and many of the services that lsb need fall under social services, so there is a need to collaborate and coordinate with other professionals in this sector (gaintza, ozerinjauregi & aróstegui 2018). the fact that lsb are perceived to have a learning problem is a major concern and an important issue to address to ensure appropriate support in the classroom (kalucy, bower & stanley 1996). the lack of teachers’ skills in adapting the curriculum to meet a range of learning needs was identified as a contributory factor to hampering the progress of inclusive education in another south african study (chataika et al. 2012). the lack of education about the condition, especially in resource-constrained countries, has led to negative attitudes of teachers towards the learners, their delayed reactions to prevent bullying and poor understanding of how to help lsb reach their full potential (bannink et al. 2016b). other studies noted that negative attitudes may result from teachers’ inexperience in teaching learners with special needs (mcleskey et al. 2001; vaughn et al. 1996). parents and learners mentioned that learners with disabilities are safer in special schools specifically for learners with disabilities because of the intolerant attitudes of other learners and school staff (hinton & kirk 2015). teachers must be educated about lsb, their education, their disability, and their need to gain confidence in their work and develop a positive attitude. teacher attitude towards lsb is an important factor in the quality of education received by lsb (adulaziz alsolami 2023). this review has provided evidence of the limited knowledge and lack of training about spina bifida and infection control for teachers in low-middle-income countries. in contrast, research indicates that lsb experiences a general lack of accessibility to facilities and high rates of bullying (bannink et al. 2016a, 2016b; governey et al. 2014; mathew 2006). this highlights the lack of enforcement of policies. although there is research on spina bifida, there is little research on infection in lsb in a school setting. it is still unclear whether the responsibility to provide resources needed for infection control rests with the parents or the school. further research is necessary to investigate the responsibility of providing resources for infection control on lsb. limitations there were some differences between reviewers at full article screening; however, they were resolved by a third reviewer and an agreement was reached. the assessment of bias was not conducted on the studies included. the effectiveness of the search strategy used to retrieve relevant studies is crucial. some relevant studies may have been missed because of the choice of databases and keywords. scoping reviews might be susceptible to publication bias, as they often rely on published studies. the review’s findings may be limited by the period within which the included studies were published. new evidence might have emerged since then, impacting the overall conclusions. a librarian was not involved in the development of the search strategy. conclusion the findings of the review have provided evidence of poorly functioning educational systems that do not serve the needs of lsb in low-middle-income countries. teachers lack sufficient knowledge of infection control in lsb and, thus, there are inadequate infection control practices in schools that accommodate lsb. training of staff at schools with lsb is required. these schools need the appropriate resources, including health professionals, special needs assistants and social services professionals, to cater to the needs of lsb. acknowledgements the authors acknowledge dr tafadzwa dzinamarira for offering screening assistance. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.r.m. with guidance of the available screener assistance, screened the titles and the abstract of the identified studies. s.r.m. retrieved the text from the identified studies and, together with j.m.v.w. executed the cross analysis. s.r.m. independently charted the data, while s.m. and j.m.v.w. reviewed the charted data. s.r.m. wrote the article under the supervision of s.m. and j.m.v.w. all authors have read and agreed to the published version of the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the authors confirm that the data supporting the findings of this study are available within the article. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the 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childrenswi.org/medical-care/fetal-concerns-center/conditions/infant-complications/spina-bifida. abstract introduction materials and methods results themes discussion conclusion acknowledgements references about the author(s) munyaradzi chimara division of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa department of occupational therapy and physiotherapy, faculty of health sciences and veterinary medicine, university of namibia, windhoek, namibia hester m. van biljon division of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa fasloen adams division of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lana van niekerk division of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation chimara, m., van biljon, h.m., adams, f. & van niekerk, l., 2025, ‘perspectives of mental health service users on vocational rehabilitation in namibia’, african journal of disability 14(0), a1631. https://doi.org/10.4102/ajod.v14i0.1631 original research perspectives of mental health service users on vocational rehabilitation in namibia munyaradzi chimara, hester m. van biljon, fasloen adams, lana van niekerk received: 04 dec. 2024; accepted: 01 apr. 2025; published: 29 aug. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: occupational therapists provide vocational rehabilitation to mental health service users enabling them to purposefully and meaningfully engage in work. a vocational rehabilitation practice framework to guide occupational therapists working in mental healthcare settings is absent in namibia. objectives: the study explored contextual factors to consider in developing vocational rehabilitation practice framework from the views of mental health service users and their primary caregivers. method: a qualitative collective case study design situated within an interpretivist paradigm was employed. seven focus group discussions and 23 in-depth individual interviews were conducted with service users and primary caregivers purposively selected from two study sites where vocational rehabilitation service is provided. an inductive thematic analysis was conducted utilising atlas.ti. results: three themes emerged: (1) service users want to and need to work, and have the rights to equitable work opportunities; (2) obtaining and sustaining work is difficult because of stigma and discrimination; (3) collaborative action is needed to create equitable work opportunities. conclusion: occupational therapists should embrace an advocacy role to improve equitable work opportunities for chronic mental illness service users, and collaboration with employers and family members is crucial to achieve vocational rehabilitation outcomes. contribution: the study contributes to the field of mental disability and informs vocational rehabilitation strategies for mental health service users. keywords: chronic mental illness; work opportunities; self-employment; stigma; collaborative action. introduction background evidence shows that persons with chronic mental illness wish to work despite limitations because of illness and stigma (swart & buys 2014). vocational rehabilitation plays a crucial role in enabling mental health service users to return to work or to carry on work (lloyd 2010). occupational therapists use various intervention strategies to help mental health service users regain their ability to work. in namibia, there is no occupational therapy vocational rehabilitation practice framework to guide occupational therapists when providing vocational rehabilitation services to mental health service users. in the absence of such a framework, consistency of intervention across mental health care settings is uncertain, available evidence is not generated from local context and there is no assurance about the appropriateness of interventions (chimara et al. 2024). therefore, this study explored the views of mental health service users and their primary caregivers on contextual factors that should be considered for the vocational rehabilitation of service users with chronic mental illness. the study contributed to phase ii of the four-phased doctoral study for the primary author (m.c.) who is developing an occupational therapy vocational rehabilitation practice framework for mental health service users in namibia. work-related challenges that persons with chronic mental illness face can be categorised as societal, workplace-based, personal and internal (auerbach & richardson 2005). societal challenges include the availability and implementation of vocational rehabilitation policy, vocational rehabilitation intervention strategies, physical and financial vocational rehabilitation resources, and individual vocational rehabilitation human resources (auerbach & richardson 2005). on the other hand, workplace-based challenges include dealing with stigma in the workplace, unethical workplace practices, insufficient workplace support, and conflicts with co-workers and supervisors (auerbach & richardson 2005). on the other hand, cultural and religious beliefs, social isolation, and relationship instability are some of the personal challenges that may interfere with work functioning for persons with chronic mental illness. lastly, internal challenges relate to symptoms of mental illness, a person’s insight into mental illness, compliance to medication and anxiety related to work itself (auerbach & richardson 2005). through vocational rehabilitation, which is a systematic process provided to working-age persons with health-related impairments or restrictions to improve work functioning, these work-related challenges faced by persons with chronic mental illness are mitigated (swart & buys 2014). mental health service users are seen by occupational therapists for vocational rehabilitation at two state mental healthcare facilities, namely mental health care centre (mhcc) at windhoek central hospital in the capital city of namibia, and at ward 16 in oshakati intermediate hospital which is located in the northern part of namibia. mental health care centre has two sections such as forensic psychiatry and general psychiatry sections. current vocational rehabilitation for service users in the forensic psychiatry section is centred around work projects. service users engage in various work projects such as woodwork, car wash, leatherwork, gardening and working in a tuck-shop. these work tasks are therapeutically aligned to match the functional levels of the service users. on the other hand, vocational rehabilitation service in the general psychiatry side of mhcc largely focuses on assessment to identify the vocational rehabilitation needs of the service user, and to a lesser extent on providing prevocational skills training. at ward 16 in oshakati intermediate hospital, there were no vocational rehabilitation projects for service users at the time of data collection of this study, and only one occupational therapist was employed at that time. a lack of awareness of mental illness and the stigmatisation of service users are quite apparent in namibia, and this partly contributes to the current status of vocational rehabilitation (chimara et al. 2024). shifiona, poggenpoel and myburgh (2019) conducted a qualitative study to explore and describe the experiences of individuals living with chronic mental illness in northern namibia. their findings highlighted that there is a poor understanding of mental illness in the community, persons with chronic mental illness have to permanently fight stigma, and they have limited opportunities of getting a paid job. in northern namibia, where the majority of the oshiwambo-speaking people live, mental illness is associated with bewitchment (shifiona et al. 2019). as a result, persons with chronic mental illness are often referred to traditional healers (‘onganga’) for intervention (shifiona et al. 2019). however, malpractices are rife where persons with chronic mental illness are reportedly bound on trees using chains which is a clear violation of human rights. in addition, this practice is misaligned with vocational rehabilitation principles (shifiona et al. 2019). understanding the contextual factors that should be considered for vocational rehabilitation of service users with chronic mental illness is an important step in developing a practice framework. service users and their families or primary caregivers are uniquely positioned to contribute to research endeavours seeking to understand contextual factors that should be considered for interventions affecting them. contextual factors can be defined as ‘the underlying systems, culture and circumstances of the environment in which an intervention is implemented’ (coles et al. 2020:1). considering contextual factors helps to enhance understanding of what works for whom and in what settings (coles et al. 2020). thus, explicit contextual-relevant recommendations will be available and will minimise uncertainty on how to proceed with vocational rehabilitation interventions if contextual factors are explored (chimara, van niekerk & van biljon 2022). as already indicated above, there is absence of documented evidence on the contextual factors that should be considered for vocational rehabilitation of persons with chronic mental illness in namibia. persons with chronic mental illness and their primary caregivers are an important category of mental health stakeholders whose views on the vocational rehabilitation status quo need consideration by service providers, that is, occupational therapists. therefore, this study aimed to explore context-specific factors that should be considered for vocational rehabilitation of service users with chronic mental illness from the perspectives of service users with chronic mental illness and their primary caregivers. occupational science and a decoloniality lens were the theoretical frameworks that guided our study. occupational science is: [a] basic science of the human as an occupational being, including the need for, and capacity to engage in and orchestrate daily occupations in the environment over the lifespan. (kristensen & petersen 2015:240) the authors view work as an important occupation for mental health service users which influences their life satisfaction and recovery. within the occupational science as a theoretical framework, the authors draw occupational justice concepts such as occupational apartheid, occupational deprivation, occupational marginalisation, occupational alienation, occupational imbalance and occupational inconsideration to aid our understanding of the contextual factors that should be considered for vocational rehabilitation for service users with chronic mental illness (townsend 2004). as authors from the global south, it was intentional to take a decoloniality gaze in this study taking into consideration that many occupational science terms are developed in the global north (ahmed-landeryou 2024). given that the authors are developing a vocational rehabilitation practice framework for service users in namibia, a country located in the global south, the authors critique the relevance of occupational science terms in the global south. materials and methods research design and approach a qualitative collective case study design within an interpretivist paradigm was employed. the cases were the two state mental healthcare facilities, whereas the unit of analysis was contextual factors that should be considered for vocational rehabilitation for service users with chronic mental illness who are seen at the two state mental healthcare facilities. the standards for reporting qualitative research (srqr) guided the drafting of this manuscript (o’brien et al. 2014). study context the present study focused on two state mental healthcare facilities in namibia, a southern african country with a population of about 3 million people of which 2838.71 per 100 000 population are estimated to be having mental illness (world health organization 2018). the first setting is the mhcc located in windhoek, the capital city of namibia. mental health care centre is a national referral unit where service users from all 14 administrative regions are referred to for mental healthcare services. service users who receive care at mhcc are from both rural and urban settings. the second setting is ward 16 at oshakati intermediate hospital located in an urban setting in oshakati town. service users seen in ward 16 are mainly from the northern administrative regions where about 60% of the namibian population resides. however, the majority of the service users receiving care at ward 16 are from the rural setting. both study settings have occupational therapy departments where service users should receive vocational rehabilitation. study population the study population comprised mental health service users receiving care at mhcc and oshakati intermediate hospital, as well as their primary caregivers. in this study, mental health service user or service user refers to a person with chronic mental illness who receives care at a state mental healthcare facility. chronic mental illness is defined as: … [a] non-organic or personality disorder, for a period of two or more years of outpatient treatment or hospitalization in a mental health care facility, and disability criteria that includes impairment in work, mild impairment in basic needs and disturbing behaviour. (bachrach 1988:384) the definition of primary caregiver is an individual who is informally responsible for providing care to a mental health service user. examples of primary caregivers include family members, relatives and friends. the target sample size was 64 participants, but a total of 79 participants were recruited, of which 49 were service users and 30 were primary caregivers. participant demographic characteristics are presented under the results section. recruitment and sampling a purposive sampling method was used to select service users who had been using mental healthcare services for a period of at least 2 years and their primary caregivers. recruitment was processed through the two occupational therapy departments at two study settings for participants who met the inclusion criteria and were conveniently available for the study between january 2023 and july 2023. inclusion criteria were that participants were between the ages of 18 and 64 years, that is, working age population, were mentally stable and were namibian citizens. in addition, we ensured variation of our sample in terms of gender, urban versus rural, and diagnosis. two research assistants, one in each study setting, helped with the recruitment process. a recruitment pamphlet, which highlighted the purpose of the study, criteria for participants that would qualify to partake in the study and how the participants would be involved, was used for inviting participants into the study. the contact details of service users, who were willing to participate, were recorded in the participant register kept at the occupational therapy department. the researchers asked service users who agreed to participate for contact details of their primary caregivers. phone calls were made to primary caregivers explaining the details of the study. the researchers specifically invited primary caregivers who accompanied their family members to occupational therapy for vocational rehabilitation, and the details of those who showed interest were recorded in the participant register. seventy-nine participants were recruited from the two study settings. a descriptive analysis of the study sample is presented in the results section. data collection methods and instruments a total of eight focus group discussions and 23 individual interviews were conducted with service users and their primary caregivers using a semi-structured interview guide. focus group discussions for service users were separate from primary caregivers. individual interviews were conducted for participants who could not be part of the focus group discussions because of their personal schedules. the authors met to discuss and reach a consensus on the interview guide which was informed by a scoping review study on vocational rehabilitation of service users with chronic mental illness in low-income and middle-income countries (chimara et al. 2022). the discussion questions were centred around service users’ experience as workers, vocational rehabilitation received at the hospital, ideal support needed for vocational rehabilitation, stakeholders in vocational rehabilitation, and recommendations for service providers in vocational rehabilitation. data were collected from february to july 2023 in the two study settings. the first author (m.c.) conducted the interviews in english, whereas two research assistants conducted the interviews in local languages. forward and backward translation was done for the interview guide and transcripts in local languages. all interviews and discussions were captured using a digital recorder. units of study and data processing we developed a file identification system by allocating codes to each of the 31 transcripts. our filing system allows for identification of the type of data collection used, the site where data were collected and the stakeholder category. all transcripts were cleaned and transferred to a qualitative data analysis software, atlas.ti. inductive thematic analysis was conducted following the six steps suggested by braun and clarke (2006) concomitantly responding to the research question. memoing of emerging ideas was performed by the first author who iteratively read through the transcripts. a total of 135 codes emerged through a repetitive process of discussing and renaming the codes among the four authors. the codes were reduced to categories and eventually to themes which provided insight on the contextual factors that should be considered for vocational rehabilitation of service users with chronic mental illness in namibia. trustworthiness trustworthiness was established by maintaining the criteria set by lincoln and guba (shenton 2004) which have the following aspects: credibility, authenticity, transferability, dependability and confirmability. data were collected over a period of 6 months in the two settings using semi-structured interviews and focus group discussions thus establishing credibility. a detailed account of the research methodology ensures transferability, whereas an audit trail of the research process followed contributed to both confirmability and dependability of the findings. ethical considerations ethical clearance was obtained from the health research ethics committee of stellenbosch university, with reference number s22/06/106. permission to conduct the study was granted by the ministry of health and social services (ref: 22/4/2/3). institutional permissions were granted by the respective heads of windhoek central hospital and oshakati intermediate hospital. the researchers adhered to beauchamp and childress’ ethical principles of biomedical research in conjunction with the belmont report and the declaration of helsinki. information pamphlets on the study were shared with the study participants. the purpose and details of the study were explained to the participants in a language accessible to them before they gave written consent to participate. consent for audio recording of focus groups and interviews was also obtained. audio data were stored in password-protected folders, whereas fieldnotes and printed interview transcripts were stored in a locked cabinet by the first author (m.c.). results study participants a total of 79 individuals participated in the study through focus group discussions and individual interviews from the two research sites. four focus group discussions were conducted with service users, whereas three focus group discussions were conducted with primary caregivers. all groups had all known genders and were mixed in terms of employment status, that is, employed and unemployed. regarding individual interviews, a total of 23 individuals participated, of which 17 were service users and six were primary caregivers. table 1 provides a summary of the study participants. table 1: summary of the study participants. themes three themes covering 10 categories emerged, as illustrated in table 2. the themes, categories and supporting quotes are presented in this section. table 2: themes, categories and supporting quotes. theme 1 mental health service users wish and need to work and have the right to equitable work opportunities. service users have the right to equitable work opportunities the participants reported that service users have the right to work opportunities, their work choices should be respected, and there is a need for protection in the workplace. service users should be viewed as any human being and should be accorded equitable work opportunities in the open labour market: ‘… we [service users] need that opportunity, that job opportunity that whenever they find a job somewhere, they must also employ as those that are suffering [from chronic mental illness].’ (12:36, 272 in p4jkbsuwhk, participant 4, service user) ‘i just want to add that they [service users] should get opportunities to do the work that they are capable of doing.’ (4:35, 159 in fgd4pcgosk, participant 3, caregiver) ‘i just want to say people with mental illness need to be considered as people when it comes to work because it is very difficult for us to get jobs.’ (2:13, 13 in fgd2suosk, participant 5, service user) service users should be allowed to make work choices that are aligned with their interests. some participants stressed the need for a law that protects service users in the workplace. they pointed out that service users’ voices should be heard by their employers as they express their challenges with regard to work and mental health. also, some participants reported that many service users are not fairly remunerated for their work by their employers. service users need work to sustain themselves and their families, and want to improve their mental health the study findings show that service users are motivated to work so that they can financially support themselves and their families, and that work improves their mental health. work was reported as a source of income for service users, and it allows them to meet their basic needs and of their families. in addition, primary caregivers expressed that service users have responsibilities such as sending children to school, house maintenance and taking care of their parents, and hence they need work: ‘… they [service users] need to work because some of them have children maybe two or three, i cannot take care of them with my pension grant, they need to work so that they take care of their children just like how i took care of her. they really need jobs that’s why i am saying if there are opportunities they need to work.’ (5:4, 6 in fgd5pcgosk, participant 2, caregiver) ‘we [service users] are just trying to earn for ourselves and also to support our children, like for me i have children and i am married.’ (1:17, 13 in fgd1suosk, participant 1, service user) other participants, who are service users, stated that they had to work because they also needed money for hospital visits as they stayed far away from hospitals that provide mental health services. some primary caregivers reported that they observed service users getting better after securing employment. service users themselves shared the same sentiments as their primary caregivers stating that they wanted to keep active through work to improve their mental health: ‘i have seen some of them [employers] have employed these people [service users], and from my observation they [service users] really get better.’ (4:32, 142 in fgd4pcgosk, participant 6, caregiver) service users want and need training to gain work skills the need for service users to gain work skills and entrepreneurship skills was reported by the participants. the participants believe that nowadays most jobs require qualifications and skills which the majority of service users lack. if service users gain work skills and qualifications, they will increase their chances of gaining employment. therefore, it was suggested that work skills training should start while service users are admitted in the hospital: ‘… others have mentioned sewing but we also need to get training on how to do laundry, so that we can be the ones washing clothes and linen for other patients in hospitals. we just need to be shown how the machines operate and what we need to do so that maybe when we go back to our houses we will try to look for domestic work.’ (1:43, 44 in fgd1suosk, participant 1, service user) it was further suggested by participants that the government should open vocational training schools for persons with disabilities where service users can be trained to gain work skills: ‘… the government should open a vocational school for people with disabilities and [for] people with mental illnesses.’ (3:39, 23 in fgd3suosk, participant 3, service user) in terms of the type of work, the majority of participants mentioned skills-related or domestic skills-related jobs such as domestic work, gardening and crafts work. they also emphasised the need for entrepreneurship skills to help them start small businesses where they can either buy and sell goods or just sell products that they produce themselves. vocational counselling was mentioned as a need for some service users in order to prepare them to enter the job market. service users want to be self-employed both service users and primary caregivers expressed the need for self-employment through income-generating projects especially in rural communities. the majority of participants mentioned gardening in particular as a realistic project for service users: ‘… start your own garden at home especially with fast vegetables like tomatoes, spinach, and cabbage, you can start your garden if you do not get a job. you have your garden at home and sell your food in your village to generate your own income … we can try to do something for ourselves not just wait to be employed.’ (1:1, 3 in fgd1suosk, participant 1, service user) however, the lack of funding was identified as the biggest challenge for service users who wanted to start self-employment projects. it was, therefore, proposed that the government should assist with introducing these projects in the communities as well as assisting with funding for such projects: ‘but i think if the government has to get involved is maybe just through giving these people projects to generate their own income and they should be a system that request for feedback about the projects like how they are operating.’ (4:26, 103 in fgd4pcgosk, participant 1, caregiver) theme 2 obtaining and sustaining work is difficult because of stigma and discrimination. stigma and discrimination hinder access to formal and informal employment service users are stigmatised and discriminated against at home, in the community, and at work thus hampering their access to both formal and informal employment opportunities. at home, service users are excluded from family meetings or their contribution to family meetings is not taken seriously because their family members believe everything service users say or do is not valid or relevant: ‘like in the community or even in our home, if there is maybe a meeting that i also attend and contribute to a discussion or so, people do not take my points as relevant because they think i am a ward 16 patient, i am mentally disturbed, so everything i say is not taken serious.’ (1:8, 7 in fgd1suosk, participant 3, service user) ‘sometimes it’s even our family members that are causing these things because they stigmatize us a lot and they also do not even believe us, they think everything we say or do is useless.’ (2:23, 38 in fgd2suosk, participant 2, service user) ‘people see them [service users] as mad and useless, they think they cannot work because they have mental conditions.’ (6:6, 27 in fgd6pcgosk, participant 2, caregiver) in the community, service users reported that they were treated differently from other people by community members. often, they were called by derogatory names such as ‘mad person’, ‘foolish people’, ‘abnormal’, ‘crazy’ or ‘ward 16 patient’. some service users recounted that they found it difficult to start small businesses in the community because people incited each other not to buy their products simply because they were ‘ward 16 patients’ and the community believed that they were incapable of working because of mental illness. more so, service users reported that they did not receive loans from the banks to start small businesses because of their illness. consequently, service users were demotivated to start small businesses in the community while others preferred to stay at home because of the stigma and discrimination that they experienced in the community. according to the participants, employers viewed service users as a risk to their companies, and they believed that employing them may result in low productivity and losses. service users were reported as not being shortlisted for interviews once it was known that they had a mental illness: ‘another thing that i have observed is discrimination especially when we are looking for a job especially in areas where people or the community knows us. for example, they will be like no this one is a ward 16 patient don’t take her let’s rather take this one.’ (3:7, 12 in fgd3suosk, participant 1, service user) thus, to increase their chances of gaining employment, some service users mentioned that they sought employment away from their communities where their mental health status was unknown. lack of support limits sustained employment the participants revealed that service users who were employed found it difficult to keep their jobs because of a lack of support both in the workplace and at home. service users feared being neglected, discriminated against and their contributions being ignored in the workplace and therefore rarely disclosed their illness as this might lead to their dismissal from work. ‘some of us are working but we are living in a constant fear of losing our jobs anytime especially if the boss finds out about the condition [mental illness].’ (2:40, 46 in fgd2suosk, participant 3, service user) ‘i fell sick at work and when i called them to go start again they said they replaced me with someone and they will only call me if there’s an open vacancy again.’ (7:30, 179 in fgd7suosk, participant 3, service user) a few service users who disclosed their illness at work mentioned experiencing a negative change in the way they were treated by their colleagues following the disclosure. because of the stigma and discrimination in the workplace, some service users feared returning to work or considered resigning from their work. ‘my colleagues were just shocked when i went back to work and no one wanted to come closer to me even those who i used to joke with, they just started distancing themselves.’ (3:12, 12 in fgd3suosk, participant 5, service user) lastly, family members were reported as being unsupportive to service users, especially after losing their jobs leaving them in a catch-22 situation. participants attributed the lack of support in the workplace to limited understanding of mental illness where some employers thought service users were unproductive and dangerous. theme 3 collaborative action is needed to create equitable work opportunities. awareness raising is needed for equitable work opportunities participants stressed the need for raising awareness of mental illness as well as of the vocational rehabilitation services available to service users. awareness raising should be aimed at employers and community members at large to reduce stigma. one recommendation put forward by participants was that occupational therapists should visit workplaces to educate workers and employers about mental illness and encourage employers to support service users in the workplace: ‘okay this will now depend on your employer and colleagues, if they understand mental illness then it is not going to be a problem, it is only when they do not understand it.’ (2:6, 7 in fgd2suosk, participant 2, service user) ‘is it not maybe possible for you guys [service providers] to take us to our workplaces and explain to our bosses what is happening, because it will be easy for us maybe they will understand you otherwise i don’t think there is anything that can be done.’ (3:25, 21 in fgd3suosk, participant 5, service user) another suggestion was that vocational trainers, also known as vocational education instructors, should receive training on mental health to improve their understanding of mental illness. some service users were not aware of vocational rehabilitation and occupational therapy services available to them; therefore, they proposed the hospital to take a leading role in raising awareness of these services. government needs to play its part through different ministries and programmes participants called for government action through the ministry of health and social services to provide vocational rehabilitation services for service users. they wish for hospital-based work projects which they can engage in while they are admitted to hospital: ‘even here in the hospital there is supposed to be a rehabilitation for us [service users] but there is nothing, it has been 7 years now i am being seen in this hospital for several admissions but every time is just eating sleeping, eating sleeping and nothing is going on to further help us apart from the medications, and this is actually not enough, we need much more.’ (2:17, 15 in fgd2suosk, participant 5, service user) ‘maybe the ministry of health [and social service] can also budget for rehabilitation because this concept is dead in the government.’ (2:49, 64 in fgd2suosk, participant 5, service user) some participants reported that they observed limited vocational rehabilitation resources in state mental health facilities and they suggested for involvement of hospital management in addressing this issue. a disparity in terms of vocational rehabilitation services provided at the two state mental health care settings was reported by service users who were once admitted to both facilities. in one setting, vocational rehabilitation services were reported as non-existent, whereas in another setting, service users engaged in work projects such as gardening, car-wash and leatherwork. a suggestion was made for the ministry of health and social services to collaborate with other ministries such as the ministry of gender equality, poverty and social welfare in gathering resources for vocational rehabilitation of service users. family, community and employers needed as active role-players the importance of support from family, community and employers was underscored by the participants. whereas service users called for support from their families, primary caregivers mentioned that they were ready to help: ‘it starts from home our family members need to support us.’ (2:24, 38 in fgd2suosk, participant 2, service user) a need for community support groups was suggested with some participants challenging the community to assist in seeking employment for service users: ‘oh like for us in rural areas, people with small businesses can help employ these people [service users] like at our village.’ (4:31, 142 in fgd4pcgosk, participant 6, caregiver) ‘there are charity organizations in namibia which have been playing a role to eliminate different problems and they have succeeded, there are a lot of health organizations or programs we can even mention some of them.’ (4:34, 152 in fgd4pcgosk, participant 7, caregiver) ‘it’s like we ourselves we have to support each other to do this and this so like tell each other what to do in groups, and divide work amongst ourselves like who and who are doing this and just support each other and even choose who can be a team leader.’ (8:41, 179 in fgd8suosk, participant 3, service user) participants think employers should create a supportive work environment and allocate time to service users for hospital visits. hospital visits were described as a source of encouragement by the service users. as highlighted by one service user, one hospital visit per month is sufficient to ‘keep them going’ as they receive encouraging words from service providers. these encouraging words boost their confidence and motivation to keep working. service users want to manage their mental health in the interest of achieving equitable work opportunities, service users realised the need to play their part in managing their mental health. improving their self-care, taking their prescribed medication and understanding their mental conditions were highlighted as some of the important facets of managing one’s mental health: ‘i just want to say, us the patients we need to practice what we are being taught here in the hospital even when we go home, like if we have identified triggers for our illnesses then when you are discharged you should try to avoid those things so to avoid re-admissions.’ (13:26, 61 in p5suosk, participant 5, service user) ‘but what i can say is that everyone should be responsible for their own mental illnesses [mental health] yeah, to make sure they take care of themselves.’ (2:47, 64 in fgd2suosk, participant 5, service user) on the other hand, alcohol and marijuana use was identified as one of the hindrances to effective work performance by service users. participants reported that substance use contributed to frequent hospitalisation resulting in job loss. as such, reprioritising and focusing on what is important for ensuring continuous employment, including managing substance use were viewed as part of managing one’s mental health which are important roles for service users themselves: ‘we need to focus on the reality now because we are already in it, things like taking our medications serious, focusing on the good things and avoiding the triggers of our illnesses, stop the use of alcohol and dagga [marijuana].’ (2:34, 45 in fgd2suosk, participant 1, service user) discussion the study findings reveal that despite a strong desire by mental health service users to acquire equitable work opportunities, obtaining and sustaining work is difficult mainly because of the stigma and discrimination they experience. service users face stigma and discrimination at home, in the community and in the workplace. collaborative action by various stakeholders such as the service users, family members, the community, employers and the government is needed to raise awareness of mental illness to create equitable work opportunities. in this section, we discuss these findings with emphasis on how they inform an occupational therapy vocational rehabilitation practice framework for mental health service users in namibia. mental health service users wish and need to work, and have the right to equitable work opportunities service users wish and need to work in order to financially support themselves and their families. in namibia where employment opportunities are limited due to high unemployment rate (namibia statistics agency 2017), self employment was identified as a viable employment option for service users. service users face intense competition for the limited formal employment opportunities available in the open labour market. ostrow, nemec and smith (2019) acknowledge the importance of self-employment as an employment option for service users and this option is being under-utilised. however, self-employment option has some potential barriers including a lack of technical assistance, financial challenges, a lack of access to suitable training and a lack of mentorship (ostrow et al. 2019). also, the lack of entrepreneurial knowledge and skills among service users is a barrier to self-employment. negative symptoms and long-term symptoms of some of the mental illnesses make it difficult to ensure sustained motivation, initiative and problem-solving, aspects that are integral in self-employment. despite these potential barriers, the authors propose supported self-employment as a vocational rehabilitation strategy for service users in namibia and in comparable settings in africa. participants highlighted the need for training to gain vocational skills. it is known that some common mental conditions start early in adulthood before an individual acquires vocational skills to enter the job market. as a result, these service users lack some vocational skills and experience even when their condition stabilises. conducting detailed work ability assessments and identifying potential vocational interest for such service users, performed in the hospital, are essential. this can be followed by identifying vocational training resources in the community and within the industry where service users can be enrolled to develop skills and gain the much-needed work experience. the desire to be productive and to provide basic necessities for themselves and their families is engrained in all adult human beings, and mental health service users are no exception as evidenced by the findings of this study. for service users, work facilitates identity development and is a source of income to support themselves and their families (swart & buys 2014). moreover, the structure in daily routines, being productive and the opportunity to be useful associated with work have the healing potential which is important for recovery (fossey 2019). therefore, loss of work, prolonged unemployment and exclusion from work for service users are detrimental to their health and well-being (fossey 2019). to this end, service users have the right to equitable work opportunities as highlighted by several national and international legislation. for example, the world health organization mental health at work policy brief (world health organization 2022:4) states: ‘access to decent and productive work, with fair pay in conditions of freedom, equity, security, and human dignity is the right of all men and women’. the namibia labour act 11 of 2007(labour act 2007:15) states: ‘a person must not discriminate in any employment decision directly or indirectly on grounds of degree of physical or mental disability’. obtaining and sustaining work is difficult because of the stigma and discrimination the findings are consistent with evidence in the literature which shows that stigma and discrimination are significant barriers to formal and informal employment for mental health service users. as highlighted by fossey (2019), individuals with chronic mental illness are among the most marginalised ones in terms of employment patterns and economic status. javed et al. (2021) identified three levels of stigma namely, intrapersonal stigma, interpersonal stigma and structural stigma. intrapersonal stigma refers to self-stigma and internalisation of stigma by service users, whereas interpersonal stigma refers to ignorance, misinformation, prejudice and discriminatory behaviour (javed et al. 2021). in the namibian context, cultural beliefs play a role in interpersonal stigma and discrimination of service users. this is illustrated in a study by bartholomew (2017:248) on conceptualising mental illness in namibian ovambo culture where mental illness is viewed as madness (eemwengu) and that mental illness is believed to come from ‘witching and curses’ or from ‘disconnecting from ancestors’. discriminatory social structures and policies, as well as poor and inadequate quality of mental health services, attribute to structural stigma (javed et al. 2021). experiencing stigma and discrimination on all fronts is a challenge for vocational rehabilitation interventions such as supported employment or self-employment. mental health literacy, education and awareness to service users, primary caregivers, service providers and employers are some of the measures to address stigma and improve vocational rehabilitation outcomes for individuals with chronic mental illness (world health organization 2022). more so, because stigma is culturally bound in the namibian context, service providers should engage traditional leaders in their vocational rehabilitation strategies. the lack of support for individuals with chronic mental illness to sustain employment can be explained using the social model of disability which postulates that disability is a label imposed on individuals with impairments leading to isolation and exclusion from full participation in society (haegele & hodge 2016). stigma and discrimination in the workplace, unfair dismissal from work and unsupportive family can be attributed to the perceptions of individuals with chronic mental illness as being less able to participate with members of the community (haegele & hodge 2016). support for service users received from family members, friends and employers helps them to stay in employment (shankar, barlow & khalema 2011). regarding support for service users in the workplace, shankar et al. (2011) recommend: [t]he employer must know how to communicate with the employee, must recognize the signs of declining performance, must deal appropriately with behaviour and performance issues, and must provide timely feedback and reasonable work accommodation when needed. (p. 11) it is evident that support for service users is crucial for sustaining employment; thus service providers should ensure that caregivers and employers are well equipped to support an employee who has chronic mental illness. raising awareness of mental health issues through education could be a strategy to equip employers and caregivers with skills to support service users. collaborative action is needed to create equitable work opportunities a lack of awareness of mental illness is one of the biggest barriers to employment for service users. in an effort to address unmet rehabilitation needs globally, the world health organization (who) rehabilitation 2030 initiative calls for raising awareness among policymakers, civil society and private sector (gimigliano & negrini 2017). the importance of cooperative action between and within stakeholders is emphasised (gimigliano & negrini 2017). more so, the who mental health at work policy brief identifies training to improve mental health literacy as an approach to protect and promote mental health at work (world health organization 2022). in the namibian context, training to improve mental health literacy should be extended to family members and communities in general because of the extent of stigma and discrimination towards individuals with chronic mental illness. participants called for government action through the ministry of health and social service to provide vocational rehabilitation services to individuals with chronic mental illness. the state facilities providing vocational rehabilitation for service users in namibia are limited to the mhcc and oshakati intermediate hospital. in both settings, there are limited vocational rehabilitation human resources, facilities and materials (chimara et al. 2024). as highlighted by service users at oshakati intermediate hospital, they spend most of their time lying idle in the hospital wards resulting in them struggling to adjust to work demands after being discharged from the hospital. therefore, vocational rehabilitation programmes should be an integral part of hospital-based intervention plans for service users admitted in all hospitals. there is a need for the government to create posts and recruit occupational therapists dedicated to vocational rehabilitation in these settings to meet the much-needed vocational rehabilitation for service users (chimara et al. 2024). these occupational therapists should be capacitated to provide vocational rehabilitation services, conduct work visits and engage various stakeholders such as family members. in addition, vocational rehabilitation needs a multisectoral approach. as such, the ministry of health and social services should collaborate with other government ministries and agencies to provide opportunities for service users. examples of government ministries to engage include the ministry of gender equality, poverty eradication and social welfare, ministry of industrial relations and employment creations, and ministry of urban-rural development. given our findings, a need for service providers to collaborate with family, community and employers in vocational rehabilitation of service users is apparent. family support plays a significant role in vocational rehabilitation of service users with chronic mental illness. in light of the current universal drive to deinstitutionalise mental health services, family members and caregivers of service users are obliged to take a central role as primary carers (ong, fernandez & lim 2021). consequently, family members and primary caregivers are part of the intervention team and they need mental health literacy to effectively play their roles (ong et al. 2021). a collective community support and skills development for service users through programmes focusing on issues such as coping skills, communication skills and entrepreneurship skills has the potential to improve vocational rehabilitation outcomes. collaboration with employers for supported employment and reasonable accommodation is absolutely necessary. finally, service users wish to manage their mental health on their own. evidence gathered by the who shows that individual interventions such as psychoeducation, stress management, coping skills training and leisure-based physical activity reduce emotional distress and improve work effectiveness (world health organization 2022). as reported by participants, substance use is high in namibian communities, and some service users attributed job loss to alcohol use. therefore, building the individual capacity for service users to manage their mental health and manage alcohol use should be prioritised in vocational rehabilitation. conclusion utilising focus group discussions and individual in-depth interviews allowed for a comprehensive exploration of contextual factors to be considered in the development of an occupational therapy vocational rehabilitation practice framework for service users with chronic mental illness in namibia. the authors take note that despite service users’ willingness to work, the environment is unsupportive for this cause mainly because of the stigma and discrimination at work and in the community. therefore, the study calls upon occupational therapists to take an advocacy role in protecting the rights of service users with chronic mental illness to have equitable work opportunities. this certainly requires occupational therapists to go beyond the hospital boundaries to reach out to various vocational rehabilitation stakeholders including employers and family members. despite several measures employed to enhance the trustworthiness of this study, the findings cannot be generalised. the methodology and study context for this article were described in detail such that the study can be repeated in similar low-income settings particularly in africa. acknowledgements the primary author would like to acknowledge the support received from dr matthew chiwaridzo and dr nyaradzai munambah. this article is partially based on the author, m.c.’s. dissertation entitled ‘development of an occupational therapy vocational rehabilitation practice framework for service users with chronic mental illness in namibia’ towards the degree of phd in the department of occupational therapy, stellenbosch university, south africa, with supervisors lana van niekerk, fasloen adams and hester m. van biljon. competing interests the author reported that they received funding from african collaborative grant, the elizabeth casson trust and seed corn grant which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions four authors contributed to this study. m.c. a namibian occupational therapy educator, conducted the research in partial fulfilment of his doctorate degree. h.m.v.b. and f.a. are secondary supervisors, whereas l.v.n. is the primary supervisor. all four authors, m.c., h.m.v.b., f.a. and l.v.n. were involved in the conceptualisation of the study. m.c. led the fieldwork with support from research assistants, recruited participants and conducted in-depth interviews and focus group discussions. m.c. led the analysis and drafting of the manuscript with regular input from the rest of the team. funding information the authors are highly grateful for three funding supports received for this study. the africa collaborative grant covered travel and accommodation costs for primary author for face to face meetings and mentorship with supervisors at stellenbosch university. the elizabeth casson trust supported with phd tuition fees for m.c., and the seed corn grant supported fieldwork costs for this 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https://www.who.int/publications/i/item/9789240053052. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) charlotte slome school of public health and family medicine, faculty of health sciences, university of cape town, cape town, south africa myrna van pinxteren division of social and behavioural sciences, faculty of health sciences, university of cape town, cape town, south africa leslie london school of public health and family medicine, faculty of health sciences, university of cape town, cape town, south africa citation slome, c., van pinxteren, m. & london, l., 2024, ‘understanding the impacts of the covid-19 response measures on deaf adults in cape town’, african journal of disability 13(0), a1371. https://doi.org/10.4102/ajod.v13i0.1371 original research understanding the impacts of the covid-19 response measures on deaf adults in cape town charlotte slome, myrna van pinxteren, leslie london received: 15 nov. 2023; accepted: 05 may 2024; published: 19 june 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: international literature has evidenced that deaf people have been disadvantaged during the covid-19 pandemic; however, there is currently little research published within the south african context. objectives: this study investigated the ways in which the covid-19 pandemic and its consequent response measures impacted deaf adults in cape town. method: using a descriptive approach, semi-structured, qualitative interviews were held with 15 deaf adults in cape town, south africa. participants were purposively selected through a local deaf organisation. data were analysed using thematic analysis. results: data revealed the challenges experienced when accessing information, the impact of communication barriers on daily life, and how the response measures impacted access to healthcare. conclusion: the findings of this study demonstrate how the needs of the deaf community were overlooked and their voices disregarded during the planning of the national pandemic response, ultimately having detrimental consequences. therefore, the authors argue for greater inclusion of deaf representatives to ensure equal access to information and resources, especially during a crisis. contribution: this study contributes to the growing body of knowledge on the consequences of the covid-19 pandemic in the field of disability and insights can inform both future research and interventions to promote equity and inclusion for deaf people. keywords: deaf; covid-19; information access; south africa; access to healthcare. introduction the covid-19 pandemic for persons with disabilities the covid-19 pandemic, caused by severe acute respiratory syndrome coronavirus 2 (sars-cov-2), disrupted and changed lives worldwide. socially disadvantaged populations, including persons with disabilities (pwds) suffered considerably, not only from the direct impacts of the virus, but also from the unintended economic and social consequences of response measures implemented to control the pandemic (gashaw, hagos & sisay 2021). global data has shown that in many disaster and emergency situations, the mortality rate of the population of pwds is two to four times higher than that of the population of persons without disabilities, more so due to discriminatory policies and practices than the disability itself (stough & kelman 2018). in the context of the covid-19 pandemic, pwds have more than twice the risk of dying compared to persons without disabilities (kuper & smythe 2023). persons with disabilities have reported being excluded from economic interventions, such as emergency cash transfers, access to routine healthcare and access to information (banks et al. 2020). these consequences are often worse in lowand middle-income countries (lmics) as circumstances are compounded by existing poverty, strained health systems and disease burden (engelbrecht et al. 2023). although there are some parallels between deaf experiences compared to other disabilities, the centrality of language in the deaf experience is often overlooked in wider disability studies (kusters 2011). deaf persons’ pandemic experiences the prevalence of disabling hearing loss is estimated to be 5% of the global population, and nearly 80% living in lmics (world health organization 2024). deafness is a spectrum and encompasses a wide array of experiences (enright 2022). the term ‘deaf’ denotes the medical model of deafness as a pathology and includes any person whose hearing loss is greater than 35 decibels (db), while those with some residual hearing are considered hard-of-hearing (hoh) (who 2024). whereas the term ‘deaf’ refers to deaf or hard-of-hearing people who primarily use a signed language and identify as members of the deaf community, a cultural-linguistic group that shares common values, norms, behaviours, traditions and language (heap & morgans 2006). signed languages have their own syntax, semantics and pragmatics, which are different from their spoken counterparts and other signed languages. for example, american sign language (asl) is not the direct translation of english and bears little similarity to british sign language. a majority of deaf babies (90%) are born to hearing parents who have little to no understanding of deafness or deaf culture and do not know the relevant signed language, which often hinders the child’s linguistic development and learning (chininthorn et al. 2016). systemic barriers and discrimination against deaf people have resulted in pervasive, multidimensional inequalities. compared to those who can hear, deaf people globally experience high rates of poverty, unemployment, and low literacy and education levels (barnett et al. 2011; chininthorn et al. 2016) – all of which impact their experience within the health system and their overall health and well-being. several international studies have provided evidence that the pandemic-related circumstances have amplified and exacerbated existing inequalities for deaf people, including communication, access to information and access to healthcare (park 2020; swanwick et al. 2020). the south african deaf community the prevalence of deaf south african sign language (sasl) users in south africa is difficult to ascertain, as there are no updated statistics nor reliable measurement instruments, but historical estimates range between 500 000 and 1.5 million, or 0.84% – 2.5% of the population (london, zweigenthal & heap 2020). due to educational barriers, the average reading and writing level among deaf school leavers is at a grade 4 equivalent, resulting in 75% of south african deaf adults functionally illiterate and 70% of the deaf population are unemployed (chininthorn et al. 2016). language and communication barriers, mistreatment from staff and nonadherence to medication are commonly reported by deaf patients accessing the south african health system (gichane et al. 2017; kritzinger et al. 2014). unlike most other groups, the deaf community is a population without a geographic base, making deaf organisations a central node in their social networks (heap 2003). one such organisation is the deaf community of cape town (dcct). founded in 1987 as a non-governmental organisation (ngo) by deaf people, for deaf people, dcct works to address the needs of the deaf community in the western cape province. members come to dcct for counselling services, booking interpreters, employment opportunities, skill-building and social engagements. the efforts of disabled persons’ organisations (dpos) during the pandemic to support their communities and contribute to research, despite a lack of support from government have been documented globally (hillgrove et al. 2021; hlongwane et al. 2022). south africa’s covid-19 response despite the united nations (un) disability-inclusive response to covid-19 report emphasising that pwds be included in planning covid-19 responses, the south african government did not meaningfully engage pwds at any stage of the response (mulibana 2020). shortly after the world health organization (who) declared it a global pandemic, south africa announced a national state of disaster on 15 march 2020, under which a five-level alert system was implemented to place degrees of restrictions on the freedoms of movement and assembly. although cases were relatively low at the time and no deaths had been recorded, the measures were deemed necessary to curb the spread of the virus, given the population’s existing vulnerabilities in terms of the high disease burdens of human immunodeficiency virus (hiv) and tuberculosis (tb), high levels of poverty, high urban population density and resource-limited public health system (ikwegbue et al. 2021). just 9 days after the first locally transmitted case was detected, a shelter-in-place order was implemented under the level 5 lockdown, requiring all citizens to stay at home except for certain permitted activities, such as obtaining essential goods or services, seeking emergency or chronic medical attention, or collecting a social grant (south african government 2020). additionally, public health measures including hand hygiene, compulsory wearing of a mask in public spaces and social distancing were implemented (south african government 2020). this led to discriminatory practices reported by pwds during the pandemic, including the inability to access government stimulus packages, food parcels and social grants (ned et al. 2020). persons with disabilities also reported challenges accessing their medications, attending appointments without support personnel or reliable transportation, and inadequate communication regarding the rescheduling or cancellation of routine services (ned et al. 2020). south african deaf adults expressed challenges accessing information during the pandemic without regular, good quality interpreters (adigun, vivekanantharase, & obosu 2021). while there is some evidence of the impacts of the covid-19 lockdown on deaf people in other countries, there is little research published examining the experiences and impacts of covid-19 on deaf people in south africa. the aim of this study was to assess the effect of the response measures on deaf persons’ access to pandemic-related information, ability to communicate, social functioning and access to health and social services. research methods and design research design and setting this study employed a qualitative data collection method, using a descriptive design to explore the experiences of deaf persons during the covid-19 pandemic. a descriptive design is especially suitable in research areas where little is known, allowing the researcher to expose the subjective experiences and perceptions of the participants (bradshaw, atkinson & doody 2017). there are two deaf organisations in cape town, namely, the deaf federation of south africa (deafsa) and dcct. the dcct was chosen as an appropriate research site due to its long-standing relationship with members of the research team and previous experience with research. deaf community of cape town is located in a cape town suburb of mixed middle and low socioeconomic status. many of the roughly 1000 beneficiaries travel from all across metropolitan cape town to attend dcct. study population and sampling the target population was deaf adults in cape town. a purposive sampling method with maximum variation was used to recruit participants, allowing the researcher to generate a sample from the targeted population that was both accessible and met the inclusion criteria (ulin, robinson & tolley 2005). due to covid-19 regulations restricting the researcher’s access to potential participants, a dcct staff member with experience in research assisted in recruiting participants who represented a wide variety of social and individual characteristics. for inclusion, participants had to be over 18 years, residing in cape town, be deaf or hoh, identify as part of the deaf community, communicate primarily in sasl, and agree to comply with covid-19 safety precautions. originally, those above 60 were considered high-risk for covid-19 infection and thus, were excluded from the study. however, during recruitment, dcct held an event for the elderly and the study recruiter selected a few to be participants. given that these individuals were already attending dcct, this study posed no additional covid-19-related threat and as such, they were included. in line with saunders et al. (2018), fieldwork was completed once no additional new data were introduced by participants. in our study, this occurred after the 15th interview. data collection data were collected through semi-structured, in-depth interviews. interviews were conducted in a private room at the dcct centre. the interview site met both sasl-specific requirements (e.g. good lighting, low background noise and distractions) and covid-19 precautions, based on national guidelines. the interview schedule was developed after thorough review of global literature on the impacts of the pandemic on deaf people, extensive discussions among the research team and input from equal health for deaf people (eh4dp n.d.). the eh4dp is a non-profit organisation (npo), which works with the deaf community to eliminate language barriers, promote deaf awareness in the health system and ultimately, advance the right to health for all deaf people. based on feedback from the two pilot interviewees and interpreters, the interview guide was shortened slightly to ensure questions remained relevant to the subject and participants would not be fatigued. pilot interviews were not included for the main study. during the interview, participants were asked to describe their experience of the pandemic and its response measures, the impact on their ability to communicate and access services and their ability to access covid-19-related information. interviews were conducted in english and sasl by the first author with the use of two professional sasl interpreters, certified through the south african translators institute (sati) and employed by the university of cape town (uct). the first author would ask questions in english, which were translated by the interpreter into sasl, allowing the participant to respond in sasl, and those responses were then translated back into english by the interpreter. the first author has a background of deaf studies, is proficient in asl, and has experience using interpreters. both interpreters are trained in research ethics, have prior experience interpreting for research, and were briefed about the study prior to starting. interviews were on average 30 min and the researcher worked with one interpreter per interview, as the content and duration of interviews were not deemed as needing more than one interpreter to avoid fatigue. each session was videotaped in order to capture the original signed data, with one frame on the interviewee and another frame on the interpreter. observational and reflective fieldnotes were generated as a complementary method of data collection. interview recordings were transcribed from sasl into written english before analysis commenced. data analysis the textual data were analysed using thematic analysis. transcriptions and fieldnotes were reviewed iteratively and thematically coded and stored in nvivo. the data analysis process followed the six steps of thematic analysis as defined by braun and clarke (2012): familiarising yourself with the data; generating initial codes; searching for themes; reviewing themes; defining and naming themes; producing the report. the initial round of coding was done deductively, where themes related to the study objectives were applied to the data to generate codes. a subsequent, inductive process allowed codes and themes to emerge from the content of the data. several rounds of consultation with co-authors occurred to discuss the generated themes and interpretations and were reviewed with a dcct representative and interpreters to gain additional context and ensure content validity. recurring themes were then grouped together until the four final themes emerged, which reflected the disruptions to their social and economic lives, experiences accessing covid-19 related information, challenges with interpersonal communication and their experiences in the health system. to promote rigour of the findings, the researchers adopted lincoln and guba’s (1985) four criteria. fieldnotes were used as a method of data triangulation to promote the credibility of the data and depth of the findings. although the findings cannot be transferable to other contexts, the authors provided a rich description of the study context and methodological steps. an audit trail of the raw data, fieldnotes and transcripts was kept to ensure dependability. lastly, a detailed account of the production of codes, themes and findings as well as a reflective journal of the first author’s thoughts and experiences were kept to address confirmability. ethical considerations the consent form was previously used in studies conducted with the cape town deaf community and was piloted and adjusted based on participant feedback. the consent process was videotaped to record participants’ decision as a signature, in order to capture the original data. participants were given a copy of the information sheet in local languages: english, isixhosa, or afrikaans. interpreters signed a confidentiality agreement, stating they would not discuss nor share research information with anyone outside the research team. ethical clearance to conduct the study was obtained from the university of cape town’s human rights and ethics committee (hrec ref: 198/2021). results fifteen interviews were conducted between september and october 2021. participants’ ages ranged between 26 and 67 years. ten participants identified as women, five as men. six were unemployed at the time of interviews, while nine were employed. in terms of the highest level of education achieved, nine participants had below or were at a grade 8 level, six had between grades 9 and 12. all participants were culturally deaf and considered sasl as their primary language. nine lived only with hearing people who had basic or no sasl knowledge, one lived alone, and five lived with at least one other fluent sasl user. participant characteristics are displayed in table 1. for example, participant 5 is a 41-year-old deaf man, who is unemployed, and lives with at least one other hard-of-hearing person who is fluent in sasl and at least one other hearing person who knows only basic sasl. we have included participants’ home environment as this impacts their level of knowledge, access to information and social isolation, all of which are important findings of this paper. table 1: participant characteristics. four relevant themes were derived from the data analysis: disruption of social and economic life of deaf people during covid-19, information provision during the covid-19 pandemic, the impact of the response measures on interpersonal communication and the impact of the response measures on access to health care. each theme is discussed below. disruption of social and economic life of deaf people during covid-19 the covid-19 response measures, specifically the lockdown, had a devastating socio-economic impact on participants. three participants lost their jobs due to business closures. the sudden loss of income caused financial strain on participants and their families. the stress of having to choose between budgeting for food and other necessities or masks and sanitiser was a common sentiment: ‘i worked at a hotel, but they closed in march 2020 and sent us all home. the managers asked us to write down our contact information and said they would call, but six months passed, and they never called. they finally called my mom in march 2021 to facilitate the unemployment insurance fund (uif) process. during that time, i had no income.’ (participant 14, male, 47years old) aside from financial difficulties, participants also lost contact with their deaf peers. nine participants (60%) lived with only hearing family members not proficient in sasl, which was particularly difficult during the shelter-in-place period, as they lost contact with their signing community and felt socially isolated at home. participants who had access to a smartphone or laptop were able to video chat with their friends to stay in touch, but this was limited by the high cost of data: ‘we would have video calls but sometimes you don’t have money for data and then you had to miss out for that.’ (participant 8, female, 45 years old) others described how the lockdown disrupted their daily lives and social support systems, the fear around the severity of the disease itself and the grief from losing loved ones: ‘i was sad because a lot of people i know passed away from covid. one person from my church contracted covid, which was an overwhelming situation because i had to self-isolate and stay home. it felt like i was in prison.’ (participant 1, female, 60 years old) one participant expressed how she did not feel terribly affected by the lockdown regulations because they did not drastically conflict with her regular living habits: ‘i don’t know. i’m able to sanitize and adhere to the rules. so, i haven’t been infected or affected by it. during lockdown it was like no worries for me because i don’t drink or smoke. just tea or coffee, that’s my thing.’ (participant 2, female, 67 years old) information provision during the covid-19 pandemic the lack of accessible information was a serious concern among respondents. all participants had general knowledge of covid-19 measures such as social distancing, hand hygiene and masking. however, reflecting on their experiences during shelter-in-place restrictions at the beginning of the pandemic in early 2020, they felt extremely uninformed. participants were asked to share the sources they relied upon for covid-19-related information. fourteen participants (93%) identified dcct as a main source of information. accessing information was especially difficult during shelter-in-place orders as the structures they generally relied on for social interaction and information, such as dcct, were closed. only three participants mentioned getting some information from their hearing family, but this information was hard to digest as their family members were not proficient in sasl. participant 7 reflected on his experience accessing information while living at home during the lockdown: ‘my brothers sign a little, but it isn’t much. they try to explain what the news is saying. i could have full communication with my late mother, but my brothers sign very slow. but i have to accept the situation.’ (participant 7, male, 30 years old) the televised interpreted news was the second most common source of information, as identified by 10 participants. tv channels had an interpreter every day at 17:30 and 20:00. however, participants expressed frustration regarding the inconsistency and inadequacy of the interpreted news, stating it was not enough to provide full access to information: ‘30 minutes only? that’s not enough, that’s not the details. on sabc1 we would be missing interpreters. during lockdown the interpreter wasn’t on at night. hearing people can access the news any time, but for deaf people, our time is limited. they need to have more interpreters on the news channels.’ (participant 8, female, 45 years old) the lack of access to information was also apparent in their daily conversations and social interactions. a participant who worked with other deaf adults described how they had to fight for the same information that was provided to their hearing co-workers: ‘my workplace explained about covid but not with an interpreter and using basic signs, so we didn’t understand a lot. when we asked what the manager said, they would say “you must wait … you must wait.” but it’s important, i need to know now!’ (participant 3, female, 38 years old) this exclusion from information and lack of context or detail provided by hearing people was a common experience and elicited feelings of anger and disappointment: ‘when deaf people ask, “what does that mean,” they’ll tell you one word and that’s all the information they share. you can see the person is sharing a lot of information but when you ask, they give you one or two words.’ (participant 8, female, 45 years old) the lack of access to information also led to deaf people not following social distancing or masking rules. several participants reported not masking or social distancing during the initial stages of the pandemic, thus increasing their risk of covid-19 infection. participant 4 shared that in the beginning of the lockdown she did not adhere to imposed restrictions because she did not realise the threat that covid-19 posed: ‘but i said, “what is dangerous?” i was told to stay home for 6 weeks but i’d go to visit my friends because i didn’t know what is this corona. what does it mean? i didn’t really understand anything … i had no information while i was staying at home during lockdown levels 4 and 5.’ (participant 4, female, 63 years old) she attributed her behaviour to being ill-informed of the restrictions and the importance of adherence as a means of protection. deaf community of cape town played a pivotal role in addressing the information gaps throughout the pandemic. however, as dcct was not considered an essential service during the initial lockdown restrictions, the organisation had to close its doors from march to june 2020. during this time, dcct created covid-19 awareness videos in sasl, using information from the televised presidential addresses and the department of health’s website. these videos were disseminated through facebook and whatsapp, and participants referred to these videos as their main source of information. one participant emphasised the importance of dcct’s role in information provision, given the inaccessibility of other information sources: ‘there are many deaf people who only understand what’s happening because of the information dcct shares, because deaf people don’t have equal access to the same information as hearing people.’ (participant 15, male, 45 years old) after participants received information in sasl, they understood both the severity of the disease itself, and how the response measures could protect them from infection, and thus, began to comply with lockdown rules. participant 4 recalled how she had to wait 3 months, until june 2020, when dcct was allowed to open under level 3 restrictions, to receive any intelligible information about covid-19 and the pandemic response measures: ‘after a long time, i came to dcct and they shared information in sasl and i was like, “oh, it’s corona, it’s dangerous, it’s an infection.” so, i say thank you to dcct because it was only when they started sharing information that i understood. after i understood, i became very strict and careful.’ (participant 4, female, 63 years old) when restrictions began to ease and in-person gatherings were permitted, dcct held events both at the centre and within communities to further promote education around covid-19: ‘dcct would travel and have information sessions to explain why we must socially distance, sanitise, and mask. they also gave us bags with masks and sanitisers because they said they don’t want deaf people to die, we want to protect you. then i started to really believe.’ (participant 4, female, 63 years old) similar to before the pandemic, dcct served as a hub for the deaf community, where they could come together to support one another and share information. this especially benefited dcct employees, as they were able to regularly share and discuss covid-19-related information. one employee described the process of information sharing among staff and how such information was further disseminated into the community: ‘staff members would get the information and then do a presentation teaching us about corona and how to protect ourselves. basically, it was a training session for us so we could then share information with other deaf people.’ (participant 8, female, 45 years old) participants also expressed how important it was for them to be able to support their deaf peers, recognising how difficult it can be for some to access information: ‘if you don’t understand anything about covid and i have some information, i love to share. mostly to help deaf people because it’s very difficult to understand what covid is. they just thought it’s not safe, but knowing in detail what it entails and how it spreads, this is what we need as deaf people, to be aware and have more information about covid.’ (participant 6, female, 26 years old) participants described the inaccessibility of covid-19 information and the subsequent information deficit, which influenced their behaviours and attitudes towards the response measures. in the face of such barriers to accessing information, participants also revealed the strategies they adopted to overcome and navigate the lack of information. the organised actions of dcct were crucial in providing accurate and understandable covid-19-related information and support to the deaf community. information sharing on an individual level was also commonly discussed, and participants described the personal responsibility they felt to share the information they had with their deaf peers. the impact of the response measures on interpersonal communication aside from participants feeling uninformed by the lack of access to timely covid-19 information, they were also challenged in interpersonal communication, with both hearing and deaf people. while communicating with hearing non-signers has always been challenging, the response measures, and masking in particular, exacerbated existing communication barriers. most participants relied on lip-reading when communicating with hearing people prior to the pandemic and although this communication mode is not ideal, as it is mentally taxing and only moderately effective, masking completely thwarted the ability to lip-read. when participants asked hearing people to remove their mask or for clarification of what was said, they were met with hostile reactions. due to the communication barriers created by masking, participants had to resort to written communication, which presented its own challenges. grammatical differences between sasl and the local languages (english, isixhosa and afrikaans) often made it difficult to discern what was written. additionally, due to social distancing mandates and the fear of infection, participants described how many hearing people were hesitant to share pen and paper or get close enough to read their notes: ‘if i ask people to remove their mask, they refuse. so, i have to write things, but some would get angry. they’d say, “what does this mean, what is this about?” sometimes you just give up and have to go to the next person until you find someone who’s understanding.’ (participant 13, female, 38 years old) the communication barriers caused by masking, social distancing and lockdown regulations also disrupted daily activities such as taking taxis, going to the bank or dealing with social services like the south african social security agency (sassa) or police services: ‘i brought an interpreter with me to the sassa office, but they said the interpreter must keep their mask on. we explained that we need to see each other’s faces for facial expressions, but they refused. we tried to communicate with the mask on, but it was quite difficult. some places, like sassa, had their own rules about the mask so we just had to adhere to their rules.’ (participant 5, male, 41 years old) these covid-19 mandates are often enforced by security personnel employed by sassa and police services, who are not trained to accommodate people with different needs. one participant described how masking-related communication barriers led her to get into a shared minibus taxi travelling to the wrong suburb in cape town, having both time and financial consequences: ‘it was very difficult and challenging to communicate. when you’re asking a taxi, you have to write down everything. “where are you going;” “i’m going to cape town.” sometimes people would tell me the wrong taxi to get on. and that taxi goes to sea point and not cape town. so that was very stressful for me because of the masks.’ (participant 8, female, 45 years old) while communication barriers with hearing people existed prior to the pandemic, masking created a novel challenge for deaf people when communicating in sasl. participants described how it was difficult to identify emotion and other aspects of grammar, conveyed through facial expressions in signed languages, when a large portion of one’s face is hidden behind a mask, resulting in frequent miscommunications: ‘you must take off your mask when signing with other deaf people. they need to see your lips and mouth. it’s part of the language. if you cover your mouth, they get closer to you and think you’re angry because the mask is covering your face and then you have to take it off and say, “[n]o, i’m not angry”.’ (participant 11, female, 47 years old) having to choose between full communication and protecting themselves from infection placed many in a difficult predicament. participants also noted that social distancing created a communication barrier because it goes against deaf culture and customs. while it is easy to use one’s voice to get the attention of a hearing person who may be facing the other way or not paying attention, to get the attention of a deaf person often requires tapping them on the shoulder, flickering the lights or moving around to the front of them, some of which could break social distancing rules. one participant captured this dilemma: ‘it was difficult. we must touch each other because we are deaf. how am i going to call a deaf person if they’re focusing on something else and don’t see me waving my hands? so, i have to tap them.’ (participant 6, female, 26 years old) several others described how social distancing also inhibited the important practice of physical touch in deaf culture: ‘social distancing is difficult for deaf people. deaf people want to sit next to you, be close. i would always have something between us to make social distancing but then we can sign to each other. because we are a close community, it’s part of deaf culture. it’s the deaf way.’ (participant 4, female, 63 years old) practical barriers of the covid-19 response measures on access to health services nearly all participants (n = 14) accessed health services during the pandemic. during the initial stages of south africa’s lockdown, interpreting services were not deemed essential and thus, interpreters were not allowed to accompany deaf patients. among the 14 participants who accessed health services during the pandemic, 10 (71%) expressed a desire to have an interpreter but were unable to do so due to the restrictions. a participant described her experiences being denied an interpreter when accessing care: ‘when the ambulance came to take my husband to the hospital because he had covid, i asked if my son could go with him because he’s hearing and my husband is hoh, but she said no, he needs to go alone. this was in january 2021.’ (participant 12, female, 55 years old) in the few days before her husband passed away in hospital, there was a lack of communication from health workers and the little information shared was relayed through her hearing son, which made her feel excluded and isolated. among the three participants who were allowed to bring someone to interpret, only one was able to have a professional interpreter. the other two were only allowed to bring a family member. participant 14 explained that his mother always attended his monthly appointments to assist with communication, so clinic staff made an exception by allowing her to accompany him in spite of pandemic regulations: ‘there was no interpreter, so my mom went with me. the doctor would’ve sent me back because we struggle to communicate so my mom must come with. i have a monthly appointment and they know i’m deaf so they would call me, but i can’t hear, so my mom always comes to help me.’ (participant 14, male, 47 years old) participant 3 described the challenge of having to rely on her daughter, who is not fluent in sasl, to attempt to bridge the language gap between herself and healthcare providers: ‘my daughter told them, “my mom is deaf and i’m the daughter” and they allowed her to come. she did try. it was a slow process to get information across, but we finally managed, and i got my medication.’ (participant 3, female, 38 years old) as interpreters were not allowed at the clinic, some participants had negative experiences with healthcare workers who refused to make accommodations to facilitate communication. being unable to lip-read because of masks made it impossible for patients in the waiting room to see their name being called for their appointment. one participant detailed his experience: ‘i saw they were calling patient’s names, but i couldn’t see if mine had been called because they were wearing a mask. i wrote a note, but they said, “no sorry, we can’t hear you.” i asked them to please speak more clearly but the receptionist just started pointing. i was like, “what does that mean? how are you communicating with me like that? i need you to put down your mask so i can communicate or write things down,” but they refused. there was a window too. “if there’s a window, why wouldn’t you pull down your mask?” they said no and ignored me.’ (participant 15, male, 45 years old) written communication was used most commonly during consultations, as providers refused to remove their masks. among those who used this method, the majority were dissatisfied with the experience: ‘now with masks everywhere, i have to ask people to please write. but sometimes they would say, “what are you writing here, what is this? i don’t understand.” it would make me feel uneasy. because of covid this is my only option, you need to at least accept this.’ (participant 6, female, 26 years old) not fully understanding the prescribed treatment because of providers’ limited ability to communicate was also a common experience, which led to feelings of fear and frustration as well as defaulting from medication: ‘the doctor changed my blood pressure tablets during level 4, but the nurses wouldn’t let me see the doctor and didn’t explain why they changed medication. they just brought the medication and told me to go home. the new tablets made me very dizzy so when i finally saw the doctor during level 3, i told them i don’t want to take this medication because i don’t know what it’s for and i’m afraid.’ (participant 11, female, 47 years old) there were several instances where participants devised creative strategies to address these barriers. to circumvent issues of being unable to see when the nurses call for your appointment due to masks, one participant decided to write ‘deaf’ on his medical folder as an alternative method for staff to communicate when it was time for his appointment: ‘the nurses think, “[h]ow am i going to communicate with this person or call for the appointment?” they just shove the folder aside. we thought it would help to write ‘deaf’ on my folder so they can lift it up instead of calling out the name so i can tell it’s for me. so that’s been a bit better lately.’ (participant 10, male, 45 years old) not all participants left health services dissatisfied and frustrated, as two participants had positive experiences at a local facility because staff agreed to remove their masks so they could lipread. both attributed this exception to an existing awareness of deaf culture among clinic staff: ‘the hospital knows i’m hoh, so they know to take their mask off. there’s an employee who has a deaf family member and taught other staff how to communicate and interact with deaf patients.’ (participant 11, female, 47 years old) south africa’s vaccine roll-out programme began in february 2021, targeting frontline healthcare workers, followed by an age-based eligibility over the next 6 months. at the time of interviewing, 14 of 15 participants (93%) were vaccinated. nine received their vaccine with dcct, who arranged for an interpreter to accompany them, while three went independently with an interpreter. among those vaccinated, 11 (79%) stated they would not have gone if dcct had not shared information about the vaccine and arranged to have an interpreter present so they could communicate effectively and ask questions: ‘if i hadn’t had an interpreter there, what if i couldn’t see my name called and missed my appointment? what if i said yes but didn’t know which vaccine i’m getting? what if i had an allergic reaction because they didn’t ask the right questions, or i didn’t understand correctly so gave the wrong answer?’ (participant 15, male, 45 years old) two participants were vaccinated without an interpreter present. one explained the difficulty of navigating the process without an interpreter: ‘there were no interpreters at the vaccine sites but because i wanted to protect myself, i just went. there was no one to explain the process, it was very difficult for me to understand. communication would have been smoother with an interpreter … i felt stressed and under pressure. i tried written communication, but it wasn’t easy.’ (participant 5, male, 41 years old) discussion this study focused on the ways in which covid-19 policies impacted deaf persons’ access to covid-19-related information, to communicate, and access quality health and social services. the inaccessibility of health services for deaf patients and the consequences of providers’ negative attitudes and discrimination towards pwds are longstanding, global issues (masuku, moroe & van der merwe 2021). findings from this study and several others provide evidence that the existing discriminatory practices and communication barriers in the health system worsened during the pandemic (hlongwane et al. 2022; ned et al. 2020). the exclusion of interpreters as an essential service, imposition of mask mandates, and the consequential reliance on written communication not only compromised the quality-of-care participants received, but further infringed on their right to receive health information in their preferred language, as granted in the south african health act (61 of 2003), as well as their constitutional right to access quality health care (haricharan et al. 2013). this study also found a few positive examples where accommodations, such as allowing an interpreter or removal of a mask, were granted due to an existing relationship and a common understanding of the needs of deaf people among staff. this suggests that greater efforts to prioritise education, communication and trust to foster relationships can improve the cultural competency of providers and empower deaf patients in the health system. the lack of accessible, timely covid-19-related information was a primary concern. although respondents were well-informed of preventive measures and regulations at the time of interviews, they had little to no access to reliable information in sasl for the first several months of the pandemic due to the closure of dcct, shelter-in-place orders, and insufficient interpreted news. the limitation of information available to deaf people is not a new phenomenon (chininthorn et al. 2016); however, its consequences are magnified during a pandemic, where information is developing rapidly and a lack of access to accurate information can be life-threatening. several participants in this study reported not adhering to protective measures and lockdown mandates because of an information deficit, thus increasing both their risk of infection and the potential legal consequences of not following mandated regulations. as a grim example of the latter, two deaf ugandans were shot at by authorities for being outside during the mandated curfew; however, they had no access to information regarding the measures in place and thus, were unaware of the curfew (brennan 2020). these findings highlight how sasl, like other minoritised languages, was disregarded in crisis communications and as such, severely threatened deaf persons’ health and safety. linguistic isolation during the pandemic has been reported globally, not only by deaf people (panko et al. 2021; swanwick et al. 2020) but also by many other linguistic minorities (ndlovu & dube 2021). linguistic minorities reported more misunderstandings of covid-19 preventive behaviours and greater reliance on informal information sources, such as social media or community leaders (torensma et al. 2021). the provision of public health messaging in one’s native language, from trusted sources, that is both linguistically and culturally accurate increases the support for and adoption of recommended actions (di carlo et al. 2022). in eliaz et al. (2022), language concordance during contact tracing calls was associated with 20% greater odds of covid-19 testing and 53% greater odds of accessing support services. this was substantiated by participants in this study, who reported improved adherence to covid-19 regulations after receiving information in sasl from dcct or their deaf peers. thus, the failure to recognise the deaf community as a linguistic minority and promote information in sasl put those at risk of the adverse effects of an information deficit during the covid-19 pandemic. the findings also illustrated how this information isolation was replicated within the home, which was a challenge largely unique to deaf people, as many lived with hearing family members who were not proficient in sasl, and thus had limited capacity to share complex information. similarities can be found in adigun, vivekanantharase, and obosu (2021), whose deaf respondents were unable to rely on their hearing family members as sources of covid-19 information. however, hearing families frequently shared covid-19-related information with one another, which was associated with positive family well-being and greater adherence to preventive behaviours (wong et al. 2020). commonly referred to as the dinner table syndrome (meek 2020), the exclusion from daily conversations is not a new phenomenon but with lockdown regulations mandating people remain home, deaf people were not only deprived of information but also of sign-deaf spaces, which are ‘networks of social relationships that function to create spaces of shared language, familiarity, sociability and communality in an often-hostile hearing world’ (heap 2006). this loss of social cohesion, where collective gathering is the norm, diminished the ability of deaf persons to communicate and congregate in a culturally normative way, thus limiting their ability to express part of their deaf identity and impacting their mental health. our findings echo results from other studies (silva et al. 2020; tomasuolo et al. 2021) demonstrating the notable work of deaf organisations globally to address the lack of support and pandemic information from governments. deaf community of cape town acted as a communication platform, source of covid-19 information, and support system throughout the pandemic that was essential for the deaf community. participants expressed that covid-19-related information provided by dcct was largely the only information in sasl many had access to. deaf community of cape town’s swift action and creative utilisation of social media to distribute information to the deaf community speak to their resilience. further, the high proportion of vaccinated participants can likely be attributed to dcct, who disseminated accurate, timely vaccine information and provided an interpreter at the vaccine site. despite recommendations from the who to consider pwds as stage ii priority cases for vaccination, they were not prioritised in south africa’s vaccination strategy. among a sample of 402 pwds in south africa who completed an online survey between july and august 2021, only 10% had received a vaccine, although 75% were willing to be vaccinated (hart et al. 2021). the proportion of vaccinated participants in this study, 93% (14 of 15 participants), also far surpassed the 25% national rate at the time of interviews (october 2021). the importance of prioritising vaccination for the deaf community, as one of the many vulnerable groups, and the effectiveness of facilitating vaccination through trusted community organisations like dcct, are illustrated here. high levels of vaccination among the deaf community and among those who provide services to the deaf community would enable easier communication without the barriers of masking and other precautions. in south africa, various governmental responses bypassed the deaf community, largely due to the exclusion of deaf representatives and a lack of consultation with deaf organisations during the design of the pandemic response. for example, although substantial efforts and resources were put into contact tracing, there were no guidelines to inform tracers on how to contact and communicate with a deaf or hoh case, preventing them from receiving critical information regarding covid-19 risk, testing and isolation and available resources, such as food parcels or isolation facilities. many other south african dpos expressed a lack of support and recognition from government during the pandemic, which hlongwane et al. (2022) deemed as unsurprising, given that pwds and disability-inclusive approaches are not mentioned in the national disaster management act 57 of 2002. additionally, despite ngos and community networks coming together to support the most vulnerable throughout the pandemic, dcct, like other dpos, was overlooked in these networks. in the western cape, over 170 mutual aid initiatives were developed within the first 2 months of the pandemic and provided support and resources for thousands of people (van ryneveld, whyle & brady 2022). however, these community networks neglected to partner with or communicate with dcct or any other dpo, excluding deaf persons and other pwds from invaluable resources and support, likely creating further access gaps. these examples demonstrate the missed opportunities for collaboration and inclusion that occurred not only with respect to government policy omissions but also on community level and in civil society networks. implications there is little research into the impacts of the covid-19 pandemic on deaf people, especially in lmics. this study was unique in that it examined the ways in which the pandemic response measures impacted deaf people within the deaf community, rather than only the deaf experience within the hearing world. these findings offer meaningful and important contributions to the body of literature on the deaf experience and pandemic research. additionally, the findings offer important policy implications for the inclusion of deaf and pwds in disaster planning and management, both at national and community levels. further research on deaf persons’ pandemic experiences is crucial to inform effective, data-driven solutions. limitations due to covid-19 regulations, participants were recruited because of their connection to dcct, which may have limited the variety of experiences reported. there is an inherent limitation when conducting research across languages, especially when those languages differ in modality. the use of qualified, professional interpreters that are experienced with research, method triangulation, and rounds of consultation was employed to minimise this limitation. additionally, dcct was chosen due to their long-standing relationship with uct researchers, which has created trust and commonality over the years, empowering those in the deaf community during the research process. the small sample size means the findings are not generalisable to the wider population; however, qualitative research aims to generate in-depth, rich data, rather than generalisability, which this study provided. conclusion these findings demonstrate how the pandemic and its response measures have both exacerbated existing inequities regarding access to information, health and social services, as well as created new challenges for deaf people. the absence of understandable covid-19 information for linguistic minorities is a global problem and the information deficit it produces has potentially devastating consequences. the systematic exclusion of deaf people in south africa’s pandemic response is symptomatic of a broader omission of deaf people’s needs from policy responses, despite numerous state commitments, such as the constitution and the ratification of the convention on the rights of persons with disabilities (crpd). to mitigate this, we encourage policymakers to uphold their commitments and ensure policies are inclusive for deaf people. the recent constitutional amendment to section 6(1) to include sasl as the country’s 12th official language creates both an opportunity and duty to ensure deaf persons have equal access to services and information in sasl as any other. within the health system, there is a need to raise awareness for healthcare workers to understand the barriers that deaf people face when accessing care and to include deaf representatives on clinical boards and health committees. introducing deaf awareness into national curriculums, implementing consistent staff training on deaf linguistic rights and creating deaf cultural awareness events for both staff and patients are some ways in which deaf needs can be effectively integrated into the health system. this study also evidenced how providing information in one’s native language through trusted sources and social networks improves behaviour change outcomes. to best promote access to and acceptance of public health messaging, we suggest that local actors and policy leaders take better initiative to actively engage with deaf organisations, such as dcct, to collaborate on the creation and dissemination of health communications. acknowledgements we would like to thank all those who participated in this study and shared their experiences with us. we also thank the interpreters and the deaf community of cape town, in particular faith and carmen, for their support and time. this article is based on research conducted towards a mini-dissertation in public health (masters in public health) by the first author (c.s.) with supervision by l.l. and m.v.p. this article is partially based on the first author, c.s.’s master thesis entitled ‘understanding the impacts of the covid-19 pandemic response measures on deaf adults in cape town’, from the department of public health and family medicine, faculty of health sciences, university of cape town, south africa, received july 2022, with supervisors, prof. l. london and dr m. van pinxteren. it is available here: http://hdl.handle.net/11427/38168. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors made significant contributions to this article. l.l. and c.s. conceptualised the study. all authors contributed to the development of the methodology. c.s. collected and analysed the data with supervision by l.l. and m.v.p. c.s. wrote the first draft of the manuscript, reviewing and editing provided by l.l. and m.v.p. all authors reviewed and approved the final manuscript. funding information this research was conducted with support from the cape town-based organisation equal health for the deaf. data availability data sharing is not applicable to this article, as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s results, findings and content. references adigun, o., vivekanantharase, r. & obosu, g., 2021, ‘the deaf or hard of hearing population’s attitude and information seeking behaviour towards covid-19 in south africa’, journal of human ecology 75(1–3), 16–26. https://doi.org/10.31901/24566608.2021/75.1-3.3326 banks, l., davey, c., shakespeare, t. & 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december 2023, from https://www.who.int/news-room/fact-sheets/detail/deafness-and-hearing-loss. abstract introduction research method and design findings discussion and conclusions acknowledgements references about the author(s) pierre d. turikumana department of occupational therapy, faculty of health sciences, university of rwanda, kigali, rwanda lizahn g. cloete department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa jerome p. fredericks department of occupational therapy, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation turikumana, p.d., cloete, l.g. & fredericks, j.p., 2023, ‘personal barriers to participation in chosen instrumental activities of daily living among community-dwelling persons with schizophrenia in rwanda’, african journal of disability 12(0), a1063. https://doi.org/10.4102/ajod.v12i0.1063 project registration project research number: 19307 original research personal barriers to participation in chosen instrumental activities of daily living among community-dwelling persons with schizophrenia in rwanda pierre d. turikumana, lizahn g. cloete, jerome p. fredericks received: 28 apr. 2022; accepted: 12 dec. 2022; published: 28 june 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: mental disorders are a major health concern across the globe. schizophrenia, one of the mental disorders, affects approximately 20 million people globally and 5 million people within the african continent. schizophrenia can affect all areas of life, including participation in instrumental activities of daily living (iadls). objectives: the study aimed to explore personal barriers affecting participation in chosen iadls among community-dwelling persons with schizophrenia in kigali city, rwanda. method: a qualitative, embedded case study design and constructivist epistemology paradigm were used. purposive sampling and semi-structured interviews were conducted with 20 participants that included 10 persons diagnosed with schizophrenia (case 1) and 10 of their caregivers (case 2). data were analysed according to the seven steps of ziebland and mcpherson. findings: the two themes identified were community negative attitudes and individual hindrances to participation in iadls. theme 1 demonstrated the community’s poor support towards persons with schizophrenia due to the stigma attached to mental health illness, which is reported elsewhere. this paper reports on individual hindrances to participation, which revealed limited knowledge and skills, decreased motivation and interest, financial problems, maladaptive behaviours, medication side effects, loss of social interaction and isolation, and disorganised in performing activities to negatively affect persons with schizophrenia’s full participation in their chosen iadls. conclusion: community-dwelling persons with schizophrenia are experiencing various hindrances to participating in their chosen iadls, which shows a need for support from different stakeholders to improve access and participation of persons with schizophrenia in their daily activities based on their abilities. contribution: different barriers affecting participation of the persons with schizophrenia in their chosen iadls were highlighted together with the common affected iadls. it is recommended that when right support is provided, persons with schizophrenia may function at their maximum abilities in their activities of choice and may live at their highest independence level. keywords: individual hindrances; schizophrenia; personal barriers; medication side effect isolation; instrumental activities of daily living; community participation; decreased motivation. introduction the world health organization stated that schizophrenia affects approximately 24 million people worldwide (who 2022). schizophrenia is the most overwhelming condition among persons living with mental health conditions where persons experience disorganised behaviours and decreased ability for independence (bifftu, dachew & tiruneh 2014). schizophrenia is a serious psychiatric disorder affecting an individual’s thinking, emotions and behaviours. persons with schizophrenia may experience hallucinations, delusions, disorganised behaviour or speech, negative symptoms and impaired cognitive functions (rasool et al. 2018). considering a positive and negative syndrome scale (panss) classification of symptoms of schizophrenia, positive symptoms include sensory, behavioural and thought disturbances (hellinger et al. 2019). some of these include hallucinatory behaviours, delusions, thought disorganisation, ideas of persecution and aggression. negative symptoms include reduced motivation, emotional withdrawal, apathy, stereotypical thinking and difficulties in abstract thinking (hellinger et al. 2019). the negative symptoms experienced by persons with schizophrenia worsen the life skills such as self-awareness, problem-solving, decision making or coping with stress necessary for participation in instrumental activities of daily living (iadls) and affect occupational functioning in general (rabinowitz et al. 2012). those iadls are activities done by individuals every day to take care of themselves, their homes and their community such as shopping, caring for others, medication management, food preparation and others. those life skills are the elementary skills that are required for living autonomously, improving meaningful life and fulfilling, fruitful roles (lipskaya-velikovsky, jarus & kotler 2017; samuel, thomas & jacob 2018). those positive symptoms can act as personal barriers to participation in community activities such as attending community meetings and participation in church activities. persons with schizophrenia experience difficulties with executive functioning, which affects functional independence and participation in chosen iadls (macedo et al. 2018; ono et al. 2020), as well as difficulties in planning routines and tasks carried out daily. functional iadls greatly depend on cognitive aspects such as planning, organisation and memory (contador et al. 2020). through participation, people can gain knowledge and skills, organise time and convey structure to their lives. consequently, a lack of opportunity or inability to participate in different activities can lead people to lose structure and daily organisation at home or in the community (james et al. 2019). there is a model mental health care in rwanda established in 2009 by partners in health (inshuti mu buzima) in cooperation with the rwanda ministry of health. that model aimed to provide mental health care at district hospitals through community education programmes supporting both service delivery and access to care (partners in health 2016). moreover, few qualified mental health professionals are among the challenges to setting up a national mental health programme in rwanda (kayitashonga & mohamand 2015), which might affect the barriers experienced by persons with schizophrenia in their daily participation. therefore, this article aimed to explore personal barriers affecting participation in chosen iadls among community-dwelling persons with schizophrenia in rwanda and to inform relevant stakeholders to address barriers encountered by persons with schizophrenia living in the community to improve their participation in iadls. this article highlights caregivers’ perceptions and views towards personal barriers affecting participation in chosen iadls among community-dwelling persons with schizophrenia in kigali, rwanda. research method and design a qualitative, embedded single case study design with a constructivist epistemology paradigm was used. a constructivist epistemology was most suited for this study as it allowed the researcher to interpret the participants’ views and perceptions as a way of generating knowledge about the personal barriers experienced by participants. furthermore, a constructivism paradigm emphasises that humans construct their understanding and knowledge of the world through experiencing things and reflecting on those experiences (adom, attah & ankrah 2016). constructivists affirm that reality is subjective because it is from the participants’ perspectives (adom et al. 2016). a qualitative methodology enables the researcher to collect and analyse non-numerical data such as audio or text to understand concepts, opinions or experiences and analyses the phenomena in positions and meaning expressed by the individuals (creswell 2009). an embedded single case study design uses multiple units of analysis and improves credibility through data source triangulation with a broad range of different participants’ perspectives (lietz & zayas 2010; slack et al. 2015). persons with schizophrenia were an integral part of the study where perceptions and views of caregivers were influenced with the barriers encountered by the persons with schizophrenia within their personal and social environment. the persons with schizophrenia were defined as a case based on the following shared characteristics: having a diagnosis of schizophrenia, having a caregiver living in kigali, scoring between 20 and 30 on the mini-mental status examination. furthermore, a person with schizophrenia has to be a member of the opromamer association and live in kigali. on the other hand, the caregivers of persons with schizophrenia were defined as a case based on the following characteristics: being a caregiver of a person with schizophrenia and living in kigali. study setting the study was carried out in kigali, the capital city of rwanda. according to the 2012 population census reported in 2014, kigali has a population of 1 135 388 (ndayisaba 2013). in kigali, many people use public transport to travel to different working places, including where some iadls are performed, such as the market for shopping, churches for religious and spiritual expression activities and hospitals for seeking health services and medication management. study population, sampling strategy and selection criteria participants of this study were persons with schizophrenia and their caregivers living in kigali. qualitative researchers were advised by aguboshim to adopt sample sizes that yielded saturation based on the expert researchers in the literature who have conducted similar studies in the past. furthermore, it was recommended for qualitative researchers to use a minimum of 15 participants that may saturate between 20 and 30 interviews for the case study (aguboshim 2021). purposive sampling was used for this study. this is a method of selecting participants based on the researchers’ judgement about the most informative and potential participants (moser & korstjens 2018). twenty participants, including 10 persons with schizophrenia and 10 caregivers who participated in this study, were recruited to obtain in-depth information regarding the personal barriers affecting the participation of community-dwelling persons with schizophrenia in their chosen iadls. the following were specific selection criteria for the study participants. persons with schizophrenia had to be 18 years old and above, live in kigali city, be able to hear and communicate verbally, stable and have no comorbid physical conditions or intellectual disabilities. persons with schizophrenia with the score between 20 and 30 on the mini mental state examination (mmse) (attard 2017). occupational therapist administered this test to each person with schizophrenia before interviewing the participants to test their mental state. persons scored 20–24 were considered to have mild cognitive impairment, whereas those who scored 25–30 are cognitively able. the exclusion criteria were for those scoring below 20 because it indicates moderate to severe cognitive problems that could affect the interview process. persons with schizophrenia should also indicate their consent to participate voluntarily in the study. the caregivers of persons with schizophrenia had to be over 18 years old, have accepted the invitation to participate voluntarily in the study and be a primary carer involved in everyday care and/or providing support or assistance to an individual with schizophrenia participated in this study. the recruitment of participants was achieved by requesting the contact details of participants from opromamer association. this association strives to promote solidarity among people with mental disorders and works to transform the understanding of mental health in rwanda. the author met the leader of the association, people with mental disorders and their caregivers to shortly discuss the research access to their information (mainly names, phone number and diagnosis for those people with mental disorders). this association organised meeting with persons with mental disorders, including schizophrenia, and sometimes involved their caregivers during the meeting and support group. after receiving the phone contacts of the persons with schizophrenia and their caregivers, the author telephonically contacted the persons with schizophrenia for consent. moreover, some persons with schizophrenia who did not have phones were telephonically contacted on the phones of their caregivers as the second option. additionally, the caregiver-participants were contacted for consent telephonically after obtaining consent from the persons with schizophrenia to participate in the study. the author and participants met at opromamer association office, where the participants received the information leaflet translated into kinyarwanda language as preferred by all the participants, and the author explained the information in the leaflet to the participants. the consent form translated into kinyarwanda was also given and signed by the participants after deciding whether they wanted to participate in the study. for five persons who were unable to read, the author read the consent form and ensured that the participants understood what is in the consent form, and respected their rights to refuse or withdraw any time. consent was also obtained for audio recordings of the interviews for later analysis by the author. data collection semi-structured, one-on-one, face-to-face interviews were held at opromamer association office. interviews lasted between 20 and 30 min per interview. most questions were open-ended both to persons with schizophrenia and their caregivers based on the interview guides to allow them to talk about personal barriers affecting participation in iadls for community-dwelling persons with schizophrenia living in kigali, rwanda. the interview questions were asked to address the objectives of the study. during the interview process, the persons with schizophrenia were asked to choose the activities they mostly do from the list of different iadls. those iadls include care of others, care of pets, child-rearing, driving and community mobility, financial management, communication management, food preparation, shopping, religious and spiritual activities and expression. they also had to explain barriers encountered during those activities. after interviewing the persons with schizophrenia, the caregivers were interviewed one-on-one to explore in depth the personal barriers affecting participation in the chosen iadls of the persons with schizophrenia. this interview method was used to maintain confidentiality and to create the opportunity for all participants to speak freely. paraphrasing and prompts were used as needed, especially for persons with schizophrenia, by rephrasing, repeating and summarising the questions to obtain clear responses. as the study was conducted in the period of the coronavirus disease 2019 (covid-19) pandemic, all protective measures against this disease were considered including social distancing during the interviews, sanitising the hands before and after the interviews and wearing face masks. data analysis data were analysed according to the seven steps suggested by ziebland and mcpherson (2006). the transcription was the first step in data analysis where the interviews were transcribed from recorded interviews to text. the author and an experienced transcriber did the verbatim transcription. an experienced transcriber was explained prior by the author about the study and signed a confidential form saying that all information should be kept in private. the author read and re-read all transcripts while playing the audio recordings to correct any possible transcription errors. each participant was assigned a code known only by the author to safeguard anonymity and confidentiality during the research process. the second step was reflecting on the data that were ensured during the data collection, whereby the author used a notebook and a pen to record the ideas contributing to the creation of codes and themes. the third step was coding, done through re-reading transcription and discussion with experienced supervisors during the coding process. open coding was applied to each transcript to analyse the data. the fourth step was actual analysis and was done in three steps. step 1 entailed the grouping of codes, step 2 included the generation of categories and during step 3, themes were formed for persons with schizophrenia (case 1). the analysis of caregiver (case 2) information was also done in similar ways to the persons with schizophrenia in three steps. the cross-case analysis was done by comparing the findings from the persons with schizophrenia and their caregivers where similarities and differences were explored. step five sought analytic depth and was achieved by incorporating the new insights and interpretations from the study supervisors related to the study. the sixth step was testing and confirming the results were attained through data triangulation by collecting the data from multiple data sources, including persons with schizophrenia, their caregivers and the recent literature review to support the findings. the writing up was the last step where the author made sure that the findings reflected the experiences expressed by the research participants. ethical considerations this study was granted an ethical approval by the health research ethics committee at stellenbosch university (ethics reference number: s20/11/338) and by the institutional review board at the university of rwanda, college of medicine and health sciences (approval notice: no 068/ cmhs irb/2021) as the requirement to conduct a study in rwandan community. the ethical principles ensured during the study were: beneficence, non-maleficence, autonomy, confidentiality and justice (bell & bryman 2007). according to the declaration of helsinki, the study followed the ethical principles for medical research involving human subjects (wma 2013). to ensure beneficence, participants were informed that there was no direct benefit from their participation in the study; however, all research participants were given reimbursement for lunch and transport. the persons with schizophrenia and their caregivers were informed that they might benefit from this study by the time experienced different stakeholders in charge will address barriers. non-maleficence and autonomy, such as not to harm the participants, were considered during the research process. it was planned that if the participants show emotional or psychological distress during the interviews, the interview question might be changed or the interview might be ended. the participants were also informed that they were free to withdraw from the study at any time. referral for counselling was planned in case of severe emotional or psychological distress by having a clinical psychologist in place. to ensure the confidentiality of the participants, the author assigned a code (pseudonym) for each participant during the data transcription process and ensured at all times that the information were stored where external parties could not see it. the assigned codes can be understood as follows: (1) p indicates a person with schizophrenia; (2) c indicates a caregiver, (3) the number, like 1, 2 up until 10, indicate the place at which the participant interviewed and (4) g or k indicates the district in which the participant is located. the letter g indicates the gasabo district while the letter k indicates the kicukiro district. furthermore, to uphold justice, the study participants were voluntarily requested to give informed consent to participate in the study. the study does not exclude any participants based on their educational level, socio-economic status or gender. rigour the author ensured that the study obtained accurate information by ensuring rigour, including credibility, transferability, dependability and confirmability. strategies to ensure credibility, such as peer debriefing, were achieved through working with a qualified occupational therapist who reviewed the transcripts to ensure the accurateness of the data from the participants. study supervisors also provided feedback on data analysis and the research process to avoid the author’s prejudices. transferability ensured through the thick description by providing the details of the participants, their settings and the research methodology used to help the reader determines the transferability to different settings. dependability was achieved through an audit trail where the author kept the record of the raw data and personal notes; a thick description detailing the description of research mainly data collection and analysis process was provided. furthermore, peer review through the regular discussions and meetings with the study supervisors was convened where the feedback from these meetings was considered during the study. confirmability was ensured by keeping the record of all raw data, such as the audio-taped interview, written field notes and verbatim transcription of the interviews. data triangulation was ensured by collecting data from multiple data sources, including persons with schizophrenia, their caregivers and the recent literature review to support the findings. findings participant demographic data the ages of participants from case 1 ranged between 29 and 76 years, which consisted of six women and four men. eight participants resided in the gasabo district, whereas two resided in the kicukiro district during data collection. two participants from this case scored between 20 and 24, and eight scored 25–30 on the mini-mental status examination. the scores of 20–24 indicate that the participants have a mild cognitive impairment and may require some supervision, support and assistance in their day-to-day functioning. the scores of 25–30 indicate that participants have no cognitive impairment; however, the participants might experience some deficits in day-to-day functioning especially in the most difficult activities of daily living. during the data collection process, the author occasionally repeated the questions and provided enough time to facilitate the participants to understand the questions, have enough time to think and provide the responses. the ages of participants for case 2 ranged between 25 and 70 years. the caregivers were mostly the spouses of the persons with schizophrenia, the siblings of the persons with schizophrenia or the parents of the persons with schizophrenia. eight women and two men participated in the study. eight caregivers lived in the gasabo district while two lived in the kicukiro district during data collection. following within-case analysis, 17 sub-categories were formed for case 1 (persons with schizophrenia) and 20 sub-categories for case 2 (caregivers). seven categories were generated based on similar sub-categories for case 1 and eight categories for case 2. one theme was generated for case 1 and one theme for case 2 through merging similar categories (table 1). furthermore, cross-case analysis was done by exploring similarities and differences, making links and identifying trends between the findings from the persons with schizophrenia and their caregivers. table 1: themes, categories and sub-categories. case 1: theme 1: individual hindrances to participation this theme has seven corresponding categories. an individual hindrance in this study explains anything, actions or behaviours experienced by persons with schizophrenia that negatively affect their participation in chosen iadls. category 1: limited knowledge and skills the findings of this article on individual hindrances to participation reported by the persons with schizophrenia showed limited knowledge and skills and memory problems to affect their participation in chosen iadls like phone use and medication management. some iadls performed by persons with schizophrenia were negatively affected by the inability and lack of familiarity with using some materials utilised to perform iadls like phone. ‘i don’t use phone so much… because of not knowing it.’ (p1g) ‘yeah, an individual gains knowledge and skills day by day. therefore, sometimes i find myself having limited knowledge and confidence depending on the activity or daily circumstances.’ (p5g) ‘… i may forget. but that time, they remind me to take medications and i used water to swallow it.’ (p4g) category 2: decreased motivation and interest the study findings showed that persons with schizophrenia faced decreased volition and interest in performing their chosen iadls. some persons with schizophrenia experienced decreased self-confidence and motivation levels and stopped their chosen iadls when they failed to accomplish them. ‘i feel bad. and i don’t continue to do different activities.’ (p3g) ‘my ability is low so that i cannot fulfill activities i want to do, then i immediately feel awkward, lose hope, like i cannot do anything.’ (p7k) ‘sometimes my motivation is low that i am unable to care for my goats.’ (p8g) category 3: financial problems many participants with schizophrenia reported financial problems as a major barrier that impacted their participation in their chosen iadls. some participants with schizophrenia reported a lack of financial support for their most liked iadls, such as medication management, and financial management. ‘i am a talented musician. i know how to compose and sing, so if i get financial support to produce my songs this will help me. here i want to say having a studio which will record my songs. this will be my way of delivering my message to all persons with mental health illnesses and others in the community.’ (p9g) ‘the challenge i had is taking medication because the medication is too expensive.’ (p10g) ‘what i need much is financial support. i have so many projects, but i can’t afford to realise them. i have an idea of keeping chickens and others, but i don’t have excessive desire. we have a group where we can borrow money and bring it back in 3 months. we cannot access loans from banks because when you have the history of being in caraes (neuropsychiatric hospital), they can’t risk giving you money; they think you can misuse it.’ (p2g) category 4: maladaptive behaviours the findings of this study revealed that most of the participants exhibited maladaptive behaviours such as physical fights and disorientation when they relapse that hindered their participation in their chosen iadls. persons with schizophrenia reported that their symptoms negatively influence their participation in their chosen iadls. ‘… i feel agitated sometimes. there is a time where i fight against my mother. this affected my participation in independent living activities because i spent a time at the hospital doing nothing.’ (p6g) ‘… i feel disoriented. these symptoms affect my participation in independent living activities because i spent time at the hospital doing nothing.’ (p6g) category 5: medication side effects the findings of this study showed that most of the participants with schizophrenia reported that medication side effects such as diminished body strength and extreme tiredness hinder their participation in their chosen iadls. ‘activities that required me to spend a lot of time walking, those activities are tiresome for me, because of medication side effects as i have been using haldol and my neck gets stiffness.’ (p6g) category 6: loss of social interaction and isolation the study’s findings revealed that almost all participants with schizophrenia reported limited social interaction and isolation as barriers hindering their participation in chosen iadls. ‘most of the time i do them alone and this caused me to not finish this activity. i become bored.’ (p7g) ‘oooh!! no, i go on my own without looking or talking to others.’ (p9g) category 7: affected instrumental activities of daily living the most affected iadls reported by persons with schizophrenia include medication management reported by five participants, household activities reported by four participants, food preparation and religious and spiritual activities reported by three participants. ‘i may forget. but that time, they remind me to take medications and i used water to swallow it.’ (p4g) case 2: theme 1: individual hindrances to participation this theme emerged from the caregivers and is composed of eight categories. category 1: limited knowledge and skills more than a half of the caregivers reported that the persons with schizophrenia presented cognitive problems including poor planning and difficulty remembering when participating in their chosen iadls and reported that some of them require reminders: ‘most of the time she doesn’t know how to organize, to start, and to complete the activities when she is alone at home.’ (c7g) ‘… when no one is at home, he does nothing, and he doesn’t care his hair look and animals are not cared for. before he could try, but now he doesn’t even understand, even when you tell him something he keeps quiet. it requires reminding him many times, he is no longer able to cook, and remembering medications is hard … we always remind him.’ (c8g) category 2: decreased motivation and interest some caregiver participants reported decreased motivation and interest to negatively impact the participation of the persons with schizophrenia in their chosen iadls: ‘he is not motivated at all. the only thing he tries to do, is keeping goats, but no motivation.’ (c8g) ‘… [h]e likes being calm and does nothing, however, when someone reminds him, he (person with schizophrenia) does the required activity after being explained that something is so important for the benefit of his life.’ (c1g) category 3: financial problem the financial problem was reported by many caregivers to limit the participation of the persons with schizophrenia in their chosen iadls, especially care of others, pets, medication management and shopping: ‘… [i]n case she has financial problems, to care about her activities becomes difficult.’ (c2g) ‘… when patients go back in the family which is poor where even eating is a problem, it is a big problem. some of the patient may even leave medications because of that problem.’ (c9k) ‘when she is healthy, she tells me ideas of what we can do, like trading tomatoes. but because there is no financial ability, you can’t know that she can do this or that. she might be having the ability to do things but, no money.’ (c5g) category 4: maladaptive behaviours many caregivers reported some maladaptive behaviours demonstrated by the persons with schizophrenia, such as aggression and wandering mainly during the crisis condition and have negative impacts on the participation of persons with schizophrenia in their chosen iadls: ‘signs are laughing and talking, and sometimes she tells me that i am the one who is sick. she even brings medication and tells me to take them as i am the one who’s sick. she wakes in middle of the night and takes a bath … when she is in crisis, she can even bring water from the spring, and she pours it all on her body.’ (c5g) ‘he doesn’t work, he only lay down. one day, he was attacked by crisis at work, he left the working place and was directing the cars in the street.’ (c10k) category 5: medication side effects many caregivers testified that side effects of the medications taken by the persons with schizophrenia have a negative impact on their participation in the chosen iadls. the reported medication’s side effects include body weakness, tiredness and sleeping too much: ‘he is not able, because it’s been a long time that he has this disease and medications that he takes everyday have induced body weakness overtime. it’s obvious that he is weak.’ (c1g) ‘… [m]edications that these patients take, weaken their bodies so much. when patients go back in the family which are poor where even eating is a problem, it is a big problem. some of the patients may even leave medications because of that problem.’ (c9k) ‘… she told me that she was tired and every time she was sleeping.’ (c6g) category 6: loss of social interaction and isolation most of the caregiver participants stated that persons with schizophrenia find it difficult to socially interact with others, thereby hindering their participation in their chosen iadls. the caregiver participants noticed that persons with schizophrenia experience problems keeping the conversation going which impacts their participation in iadls requiring verbal expression at home and in the community. also, the caregivers explained that persons with schizophrenia face self-isolation, which impacts their participation in chosen iadls that must be carried out in groups of many people. ‘sometimes he is so quiet, and you see that he doesn’t want to talk to others.’ (c1g) ‘when you tell him something he keeps quiet.’ (c8g) ‘most times she is alone.’ (c7g) category 7: disorganised in performing activities many caregiver participants reported disorganisation such as not completing activity started and a lack of control among the persons with schizophrenia when participating in their chosen iadls: ‘she loves working and shows that she wants it, but she just can’t. before, she could peel potatoes for us, but now she can’t. she can even take the charcoal to her bed and grinds it and when you ask her what she is doing she says, well, i am cooking. so, all that you said she really wants it, but she just can’t…’ (c3g) ‘what i can say is that his disease makes him lose control.’ (c1g) category 8: affected instrumental activities of daily living six iadls were reported by the caregivers to be affected due to individual hindrances. four of them were mostly reported, including medication management, food preparation and religious and spiritual activities, each activity reported by four caregivers, while care of pets was reported by three caregivers: ‘[h]e is becoming weaker. previously, he [person with schizophrenia] could keep domestic animals and he did it perfectly, but now he is not being cared at home and he needs someone to remind him many times. he is no longer able to cook, and remembering medications is hard.’ (c8g) cross case analysis from case 1 and case 2 individual hindrances were reported by both persons with schizophrenia and their caregivers to negatively affect the participation of persons with schizophrenia in their chosen iadls. half of the persons with schizophrenia reported limited knowledge and skills in using some materials, including phones, and difficulties in remembering to take medications as hindrances to participating in medication management. in contrast, a greater number of their caregivers reported limited knowledge and skills in planning, which affected the financial management activity among persons with schizophrenia. persons with schizophrenia showed financial problems, including a lack of access to loans that affect their participation in caring for others, buying medication and caring for domestic animals like keeping chickens. however, most of their caregivers reported that the main source of financial problems is poor planning and abnormal behaviour because persons with schizophrenia spend money everywhere while trading. most caregivers reported body weakness and sleeping too much due to medication side effects as an individual hindrance to participating in household activities. in contrast, many persons with schizophrenia reported decreased body strength in food preparation and participating in activities requiring walking a long distance to work. both persons with schizophrenia and their caregivers reported five commonly affected iadls due to individual hindrances: financial management, medication management, food preparation, household activities, religious and spiritual activities and expression. however, only caregivers reported care of pets, whereas only persons with schizophrenia reported child rearing. this study shows that participation in a single iadl (like domestic activities) might be affected by more than one barrier, like limited knowledge and skills and body weakness due to medication side effects. therefore, based on the study findings, most of the barriers reported by persons with schizophrenia are in line with the barriers reported by their caregivers, even though there are other barriers either reported by persons with schizophrenia alone or by caregivers. an example of similarities in response for both participants includes medication side effects, where the person with schizophrenia stated, ‘when i took medications, they had strong effects on me’ (p2g) and the caregiver reported that: ‘she [person with schizophrenia] doesn’t do her activities when she immediately takes medications, because the medications have strong side effects on her. she immediately goes to bed after taking those medications.’ (c4g) discussion and conclusions this paper focused on exploring the personal barriers affecting participation in chosen iadls among community-dwelling persons with schizophrenia living in kigali, rwanda. the study revealed that persons with schizophrenia reported limited knowledge and skills, including their ability to access information and memory problems that hinder their participation in chosen iadls such as taking medication, meal preparation and phone use. on the other hand, most of the caregivers also reported limited knowledge and skills of the persons with schizophrenia, which includes forgetting to take medications, limited knowledge in financial management, a lack of concentration and poor planning of daily activities such as the time of taking medication, caring of pets and the time of cooking. similarly, macedo et al. (2018) conducted a qualitative study where caregivers reported that persons with schizophrenia experienced difficulties in planning routines and tasks. cognitive dysfunction in schizophrenia is linked to poor social functioning, which impacts the accomplishment of the activities requiring higher executive functioning including iadls and affects other functional outcomes (contador et al. 2020; shimada et al. 2016). the decreased ability to function independently in the home environment was reported by the family members of the persons with schizophrenia (krupchanka et al. 2018). this paper found that self-isolation, decreased motivation and limited social interaction hinder the engagement and participation of persons with schizophrenia in iadls such as household activities. the loss of interest in those activities also hinders the participation of their family members who live with the persons with schizophrenia. this finding is supported by macedo et al. (2018), who reported decreased volition among persons with schizophrenia. the persons with schizophrenia experienced self-isolation, low self-confidence and limited social interaction, as reported by caregivers. those barriers were found to contribute to poor performance in household activities. bhuyan, chaudhury and saikia (2016) found that social embarrassing behaviours had a negative impact on participation in iadls. horsselenberg et al. (2016) showed that victimisation and symptoms led to self-stigma and contribute to poor self-esteem among persons with schizophrenia. therefore, there is a need to boost self-esteem, self-confidence and motivation of persons with schizophrenia to improve their participation in their daily activities and social interaction with other community members. the maladaptive behaviours were found to hinder the participation of persons with schizophrenia in chosen iadls. when these behaviours are expressed, persons with schizophrenia are taken to the hospital and lose their daily functioning at home or in their community. ayres and panickacheril (2015) found that abnormal motor behaviours created difficulties in goal-directed behaviours, which limited the accomplishment of different daily activities and affected the competencies of persons with schizophrenia to live and participate independently in the community. bhuyan et al. (2016) revealed that socially embarrassing behaviour is high among persons with schizophrenia, and these behaviours negatively impact their participation in iadls demanding social interaction and routines. therefore, it is paramount that the family and community members helping persons with schizophrenia realise the need for early support and treatment. this study found that medication side effects hinder the participation of persons with schizophrenia in medication management, household activities, religious and spiritual activities and food preparation. the medication’s side effects were stated to reduce physical strength, cause too much sleeping and cause extreme tiredness when participating in different iadls. some persons with schizophrenia stop taking those medications as a result of their side effects. these findings are supported by the literature, where mental health service users reported the problem of treatment availability due to the side effect of the medication (dockery et al. 2015). the medication side effects were also reported by both persons with schizophrenia and caregivers to affect the health of persons with schizophrenia (james et al. 2019). therefore, mental health professionals should be aware that the side effects of medications taken by persons with schizophrenia affect their participation in their daily activities. through the provision of available medication with minimal side effects, clear explanations of the side effect of medication taken, and management of these side effects, establishing good community follow-up of the clients would be beneficial to reduce the medication side effects and the number of hospitalisations. both persons with schizophrenia and caregivers reported that financial problems affect the participation of persons with schizophrenia in iadls. the lack of financial support from the family and government and the inability to access bank loans limited their participation in chosen iadls, such as caring for children, shopping, purchasing and managing medications and attending medical appointment at the health facilities due to poverty. mental health service users and their caregivers reported difficulties affording financial costs, problems with transport facilities, inadequate governmental and social services and a lack of needed support for persons with schizophrenia (james et al. 2019; krupchanka et al. 2018). therefore, support to the socio-economically disadvantaged families with persons with schizophrenia may help them to improve their participation in their needed and chosen activities such as medication management, shopping and other activities of their choice. providing health insurance covering the cost to disadvantaged persons with schizophrenia would help them more easily access health services. the decentralisation of mental health services provision at the community level may also help the mental health service users to have easier access to treatment. the above findings are linked to the results from the study done by samuel et al. (2018), where the impacted iadl activities were medication management (86%), food preparation (85%), shopping activities (78%), financial management (61%) and housework activities (47%) among the persons with schizophrenia. it was also stated that persons with schizophrenia still face problems participating in financial management activities (dockery et al. 2015). occupational therapists put more emphasis on the participation of individuals in occupations or activities. therefore, they should be aware that persons with schizophrenia experience different personal barriers, such as cognitive problems, disorganisation in iadls and decreased motivation. these barriers should be addressed before they are discharged to ensure maximum participation in social community activities. regardless of these barriers, when support from relevant stakeholders is provided, individuals with schizophrenia can participate in their chosen activities and live productively in their families and communities. limitations this study reported a few limitations. the study participants were all involved in activities of the opromamer association for the members who live in kigali city, which might impact the barriers they face compared with those not members of the association. due to the study design, it is difficult to generalise the findings. however, the concept of thick description was ensured through a detailed description of the participants, their setting and the research methodology used to help the reader to determine the transferability to a different setting. also, purposive sampling was used in the selection of the participants based on the selection criteria. another limitation of the study is the use of single method of data collection which is interview. however, the researcher collected data from both persons with schizophrenia and their caregivers which have contributed in having varieties of data. recommendations this paper recommends future studies to explore how cognitive problems encountered by persons with schizophrenia affect their participation in iadls and the strategies to overcome personal barriers affecting the participation of persons with schizophrenia in their chosen iadls activities. further research might be conducted in the rural area for non-opromamer association members to explore barriers affecting the participation of persons with schizophrenia in activities of their choice. acknowledgements the opromamer association and participants are acknowledged for their willingness to participate and share their experiences. humanity & inclusion that provided the financial support (funder had no involvement in study design, data collection, analysis and decision to publish), the study supervisors, dr melissa toporek, mr celestin bigirimana and mrs marike cloete are also acknowledged for their support. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions p.d.t. identified the research topic, formulated the research aim and objectives, contributed to the conception and design of the work, collected the data, involved in transcription, translation and analysis of the data and contributed to the writing of the manuscript. l.g.c. and j.p.f. provided academic guidance, mentorship, supervisions and editing contributions throughout the research including the formulation of the objectives, design of the work and data analysis; they also contributed to the writing and editing of the manuscript. funding information this work was supported by handicap international rwanda known as humanity & inclusion. data availability the datasets generated and analysed to support the findings of this study are available from the corresponding author, p.d.t., upon reasonable request. disclaimer the views, thoughts and opinions expressed in this article are those of the authors and not an official position of any 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abstract introduction setting and approach relevant changes lessons learnt acknowledgements references about the author(s) elizabeth m. petersen division of global health equity, brigham and women’s hospital, boston, united states emily b. wroe division of global health equity, brigham and women’s hospital, boston, united states partners in health, neno, malawi kondwani nyangulu partners in health, neno, malawi chisomo kanyenda partners in health, neno, malawi sam njolomole partners in health, neno, malawi elizabeth l. dunbar partners in health, harper, liberia chiyembekezo z. kachimanga partners in health, neno, malawi citation petersen, e.m., wroe, e.b., nyangulu, k., kanyenda, c., njolomole, s., dunbar, e.l. et al., 2019, ‘integrated home-based screening for people living with disabilities: a case study from rural malawi’, african journal of disability 8(0), a582. https://doi.org/10.4102/ajod.v8i0.582 case study integrated home-based screening for people living with disabilities: a case study from rural malawi elizabeth m. petersen, emily b. wroe, kondwani nyangulu, chisomo kanyenda, sam njolomole, elizabeth l. dunbar, chiyembekezo z. kachimanga received: 15 oct. 2018; accepted: 19 sept. 2019; published: 22 nov. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract people living with disabilities (plwds) have poor access to health services compared to people without disabilities. as a result, plwds do not benefit from some of the services provided at health facilities; therefore, new methods need to be developed to deliver these services where plwds reside. this case study reports a household-based screening programme targeting plwds in a rural district in malawi. between march and november 2016, a household-based and integrated screening programme was conducted by community health workers, hiv testing counsellors and a clinic clerk. the programme provided integrated home-based screening for hiv, tuberculosis, hypertension and malnutrition for plwds. the programme was designed and implemented for a population of 37 000 people. a total of 449 plwds, with a median age of 26 years and about half of them women, were screened. among the 404 plwds eligible for hiv testing, 399 (99%) agreed for hiv testing. sixty-nine per cent of plwds tested for hiv had never previously been tested for hiv. additionally, 14 patients self-reported to be hiv-positive and all but one were verified to be active in hiv care. a total of 192 of all eligible plwds above 18 years old were screened for hypertension, with 9% (n = 17) referred for further follow-up at the nearest facility. in addition, 274 and 371 plwds were screened for malnutrition and tuberculosis, respectively, with 6% (n = 18) of plwds referred for malnutrition, and 2% (n = 10) of plwds referred for tuberculosis testing. we successfully implemented an integrated home-based screening programme in rural malawi. keywords: malawi; disability; screening; task shifting; primary healthcare. introduction people living with disabilities (plwds) constitute up to 15% of the global population, and about 80% of them live in lowand middle-income countries (hanass-hancock et al. 2016). it is well documented that plwds have poor access to healthcare, a problem that is worse in rural than urban areas (world health organization [who] 2011). for sexual and reproductive health services (srhs), plwds are often not involved in planning nor targeted for routine treatment and screening. healthcare workers are often not trained on how to provide services to plwds, and some deny them care as they consider plwds asexual (hanass-hancock 2009). although the disability itself may prevent access to care, some studies also attribute access difficulties to poor socio-economic status (eide et al. 2015; vergunst et al. 2017). for example, in many african countries, including malawi, the main reasons for lack of access to health services for plwds include lack of transport, inadequate availability of services, drugs and equipment, and high out-of-pocket costs (eide et al. 2015). these challenges are magnified by a weak health system, poverty, illiteracy, stigma and marginalisation of plwds (hanass-hancock, regondi & naidoo, 2013; vergunst et al. 2017). caregivers and families of plwds also face challenges with accessing health services. households with plwds are worse off: they tend to have a high number of dependents, high unemployment, a lower income, reduced access to education and in general have higher levels of poverty (munthali 2011). people living with disabilities are a vulnerable population, and healthcare systems should be adapted to address their barriers to care. with the shortage of professional healthcare workers in many low-income countries, including malawi (malawi government, 2017), new approaches for delivering services in the community and household need to be developed. one approach is task shifting, a process of transitioning complex responsibilities to less specialised staff. while task shifting has been successful in many srhs, including hiv programmes (callaghan, ford & schneider 2010; dawson et al. 2014), programmes need to adapt task shifting for home-based screening, focusing on appropriate supervision, well-trained staff and appropriate allocation of responsibilities to ensure quality services (dawson et al. 2014). neno district is a southwestern district of malawi with an estimated population of 150 800 (national statistical office 2008). recent estimates showed that approximately 5000 people, or 3.5% of the population, are living with disabilities (partners in health 2015). this case study reports an approach to home-based screening for hiv, malnutrition, tuberculosis and hypertension for plwds and their families in neno district. setting and approach the plwds home-based screening programme was instituted in response to a 2014 survey conducted by community health workers (chws) to identify the number of plwds in neno district. the chws, who are all long-term residents of neno and have been employed since 2007, focus on education, case identification and referral for hiv and tuberculosis services. during the survey, plwds expressed significant challenges in accessing screening services because of lack of transport and lack of health service prioritisation for plwds at the facilities. to address these challenges, in 2016, this programme was piloted in a remote area on the mozambique border, targeting an estimated 1300 plwds of the population of 37 000 people (partners in health 2015). neno is one of the poorest and most remote districts of malawi, with a poverty level 15% higher than the national average (national statistical office 2012). the goal was to revisit households that registered plwds during the survey and offer screening services. additionally, efforts were made to identify plwds not originally identified. as in the initial survey, plwds were identified based on the international classification of functioning, disability and health (icf), which encompasses impairments, activity limitations and participation restrictions (who, 2018). people living with disabilities were identified by asking disability-related questions that identified functional limitations in the three domains of icf (box 1). based on the screening questions, people were classified as either having a disability or not; no grading of disability was performed. box 1: screening questions for disabilities. to maximise integration, several screening programmes were combined, namely hiv, tuberculosis, malnutrition and hypertension (table 1). because of shortage of clinical staff, task shifting for home-based screening utilised three groups of support staff: chws on a monthly stipend, one clerk from the hiv clinic and hiv testing counsellors. community health workers personally knew the plwds and were responsible for informing community leaders and households at least a day before the screening. additionally, as part of their routine tasks, chws were already trained to provide malnutrition and tuberculosis screening. for hiv screening, existing hiv counsellors provided counselling, testing and referral. these counsellors were already working in the district and received a standard 4-week training organised by malawi ministry of health. the clerk who normally worked in an hiv clinic providing routine screening provided hypertension, tuberculosis and malnutrition screening and supervised the team. none of the staff were providing all four screenings as hiv screening required nationally certified hiv providers. this multidisciplinary team received a 2-day additional training on identification of plwds, appropriate communication to plwds and screening and referral procedures for different conditions. all screening was provided free of charge. table 1: screening and referral criteria for home-based screening. household-based screening started in march 2016. consent to screen households for plwds was obtained from the head of household. additional informed consent was obtained from plwds if they were over 18 years and fit to give consent, and if not, informed consent was obtained from a legal guardian. to ensure confidentiality, all screening and communication of results was conducted in a private space within the household. if plwds or household members screened positive or were seen to be sick, they were counselled on-site about their condition by a team member and referred to the nearest facility. since households with plwds often have barriers in accessing healthcare services, the screening was offered to all household members who were given a choice to opt out of any of the screening services, although the intervention prioritised screening plwds. as the screening team was already working with patients, they were reminded on infection prevention and given materials for infection prevention. this home visit package is explained in table 1. all results were recorded in a specially designed screening register and were transferred to excel for cleaning and analysis. relevant changes between march and november 2016, 600 people were screened in their homes. among the individuals screened, 75% (n = 449) were plwds and the remaining were their family members. the median age of plwds was 26 years (iqr 13–51), 48% (n = 217) were women and 70% (n = 315) were 15 years and above (tables 2 and 3). table 2: types of disabilities. table 3: characteristics of patients screened using home-based integrated testing. of the 449 plwds screened for hiv, only 6% (n = 26) of those eligible for testing had a known hiv status (14 were hiv-positive and 12 had a negative test result within the past 3 months). among those who were hiv-positive (n = 14), all except one individual were enrolled in hiv care. among all remaining plwds (n = 404), three people were ineligible for an hiv test as they were aged less than 2 years, and two individuals declined testing. of those eligible for an hiv test, 99% (n = 399) accepted the hiv test. among the 399 tested successfully, 69% (276) never had an hiv test before. at the end of the screening, one person tested hiv-positive and was successfully linked to care. in total, 192 of the 280 eligible plwds above 18 years old were screened for hypertension, with 9% (n = 17) referred for follow-up for blood pressures greater than 160 mmhg systolic or 110 mmhg diastolic. an additional 274 and 371 plwds were screened for malnutrition and tuberculosis, respectively. six per cent (n = 18) of those screened for malnutrition were referred to care, as were 2% (n = 10) of those screened for tuberculosis. lessons learnt as malawi is struggling with a double burden of hiv and non-communicable diseases, programmatic approaches are needed to reach key populations where they live (malawi government 2017). because of a shortage of health workers, it may not be possible to use formally trained professionals to provide household-based screening. limited information describing the use of task shifting to identify plwds and provide household screening exists in malawi. household-based studies report on disability identification and linkage to care by chws and/or non-clinical staff (mulwafu et al. 2017; tataryn et al. 2017). we could not find any programme that employed task shifting to provide integrated household screening, including hypertension screening, for plwds. secondly, the programme demonstrated the feasibility and acceptability of combining screening for hiv and other conditions, including hypertension, in a household setting: a high proportion of plwds accepted the services. however, few family members accepted to be screened. the screening team focused screening the plwds and it may be the reason that influenced lower uptake, but we were not able to collect information on why family members and some plwds refused some of the screening. this could be addressed in programmes similar to this case study. thirdly, this project provided one approach for household-based targeted disease screening, specifically for hiv, to a vulnerable population. people living with disabilities were targeted because of their limited access to services. up to 10% of the plwds were referred for services. a large majority of the plwds had never before had an hiv test, which is striking given the considerable investments on hiv programme in malawi. we hypothesise that this could be the result of stigma and difficulty accessing available services related to disability (mcbain et al. 2017). further efforts will be required to ensure that patients who tested negative remain negative; this will be addressed through continued preventive services by the chws. after the pilot, we could not roll out the programme to the whole district because of limited funding; however, with funding, this could be scaled up to other settings, and considering the specific needs of plwds is a component of ongoing exploration in neno for the optimisation of integrated home visits. there are a few notable limitations to this programme. firstly, the disability identification tool we used mainly identified self-reported functional disability. additionally, this identifies the most common disabilities and may miss ‘invisible disabilities’, such as mental health disorders. we also could not measure the severity of the disabilities. secondly, the programme was carried out with a small population in a remote area of malawi, making it difficult to generalise to neno and other district of malawi. thirdly, we were not able to cost this programme that would give more information in whether scale-up would be recommended. fourthly, we referred patients to the nearest health facilities but were not able to ascertain if all plwds were successfully linked to care. future programmes would consider the following steps to improve on our limitations: (1) expand household screening to other common chronic condition such as diabetes as they are also common in lowand middle-income countries, (2) cover a larger population to identify more plwds who can benefit from the screening, (3) design efforts that can be made to ensure that many family members of plwds are screened and document reasons of refusals for both plwds and family members, (4) measure costs to help other programme managers to plan and implement this programme and (5) design strategies to ensure that referred plwds receive the care at the facility as they may either not go to facilities or face other barriers once they arrive at the facility. nb: the disability-associated questions were designed by united nations washington group on disability statistics (http://www.washingtongroup-disability.com). they were translated to local language by bilingual speaker (both english and chichewa speaker [local language of malawi]) and were pre-tested in the initial survey conducted in 2014. the people screened were classified as either having disability (if they have a score 2 or above) or no disability if they score 1. the type of disability was also recorded. acknowledgements the authors thank all the community health workers, hiv testing counsellors, integrated chronic care staff, ministry of health and partners in health staff members who participated in this community-integrated screening programme. competing interests the authors have declared that no competing interests exist. authors’ contributions e.m.p. designed and implemented the project, conceptualised the study, wrote the first draft and conducted data analysis. e.b.w. designed and implemented the project, conceptualised the study, wrote the first draft and conducted data analysis. k.n. designed and implemented the project. c.k. implemented the project. s.n. designed and implemented the project. e.l.d. designed and implemented the project and conducted data analysis. c.z.k. conceptualised the study, wrote the first draft and conducted data analysis. e.m.p. and e.b.w. have equal contribution to the study. all authors provided input to the manuscript and approved the final draft for submission. ethical considerations the project was conducted as part of a routine clinical care in neno, and as a result, we did not obtain informed consent. the data were de-identified and retrospectively analysed. the study was approved by malawi national health sciences research committee (protocol #1216). funding information this study was funded by us pepfar small grants programme in malawi. data availability statement the data used in this case study belongs to the ministry of health in neno district. as a result, the data cannot be shared publicly. however data can be shared upon request to the corresponding author. disclaimer the views and opinions expressed in this 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world health organization, viewed 19 july 2018, from https://www.who.int/topics/disabilities/en/. abstract introduction problem statement and study goals background statement literature review theoretical approach research methods and design discussion discrimination the role of autism self-advocacy and the building of resilience conclusion acknowledgements references about the author(s) emile gouws department of inclusive education, college of education, university of south africa, pretoria, south africa citation gouws, e., 2025, ‘transitioning from autism self-advocacy to advocating for the neurodiverse community’, african journal of disability 14(0), a1560. https://doi.org/10.4102/ajod.v14i0.1560 original research transitioning from autism self-advocacy to advocating for the neurodiverse community emile gouws received: 20 aug. 2024; accepted: 18 feb. 2025; published: 14 apr. 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in this article, i reflect on my continuing journey of becoming an autism self-advocate and how this has extended to advocate for the broader neurodiverse community. objectives: i aimed to provide an academic analysis of the value of autism self-advocacy with special reference to building resilience to confront discrimination and advocating for equal opportunities, support and inclusion. method: my autoethnographic reflections are fused with those of my co-constructors to present critical incidents that defined my journey of becoming an internationally recognised advocate for autism. results: education has been the transformative force that has changed my life, granting me opportunities to advocate for my broader neurodiverse community on various local and international platforms and guiding me to create an ecosystem of family and professionals who continuously support me and others who are neurodiverse. my advocacy, which aims at raising autism awareness, has changed the perceptions of the community of practice as well as others with an interest in supporting and including individuals living with autism in a significant way. conclusion: a network of care and support is required to sustain autism self-advocacy and to build on it to advocate for the broader neurodiverse community. contribution: this demonstrates the need for educating stakeholders to raise their expectations for autistic children and adults and for teachers and psychologists to continue supporting families and children with autism spectrum disorder (asd) to realise their full human potential. keywords: autism self-advocacy; evocative autoethnography; co-constructors; neurodiversity; global south. introduction this article discusses my ongoing journey to being an advocate for all individuals living with autism. it presents two significant incidents that have influenced this journey, each of which was supported by my co-constructors who have played a crucial role. autism self-advocacy is a movement that empowers individuals living with autism to change the attitudes and perceptions portrayed by society (pellicano & den houting 2022). autism self-advocacy has significantly influenced my professional and personal life. now, on the brink of transitioning to the next chapter of my journey as a postdoctoral fellow, i aim to combine my advocacy work with academic research. my advocacy has grown to represent the broader neurodiverse community, and these support systems have helped me as an autism self-advocate towards personal growth in unique ways. problem statement and study goals autism spectrum disorder (asd) is a lifelong prevalent neuro-developmental difference that manifests through challenges in communication, social interactions and behaviour that includes rigid routines and an aversion to changes in their environment (thwala 2018). autism spectrum disorder self-advocacy is a movement in which individuals on the autism spectrum disorders advocate for themselves and fight for their rights (ward & meyer 1999). this attitude is based on the idea of self-determination and aims to provide an insider’s perspective on how society views and treats people with autism spectrum disorder daily (glumbić, đorđević & brojčin 2022). the goal of autism self-advocacy is to bring about the necessary changes to create a more inclusive and accessible society (leadbitter et al. 2021). unfortunately, many individuals engage in autism self-advocacy because of the negative experiences they have faced in various societal settings, such as schools and universities. the main objective of autism self-advocacy is to challenge ableist views and stigma (kamperman 2020). fundamentally, many autistic people see their diagnosis as part of their identity. the focus is on the ethics of masking as a coping strategy and mental health awareness (botha 2021). newell et al. (2023) reviewed 36 studies on the mental health of autistic adults. they found that 95% of the participants had suicidal thoughts, and 24% had attempted to commit suicide before receiving treatment for depression. the positive side of this study, which corresponds to my experiences, is those individuals who use self-advocacy as a vehicle to improve their self-confidence and eventually heal their depression. in this study, i share my journey by reflecting on the events that led me to become an autism self-advocate, through which i discovered my purpose. i could not have achieved personal and academic success without the ongoing support of my ecosystem. i believe that self-advocacy is crucial for making society more inclusive and accessible. in the next stage of my journey, i am advocating for my neurodiverse community who may not have the opportunities and resources to advocate for themselves. background statement autism self-advocacy has significantly influenced my professional and personal identity. growing up, i believed that the purpose of my life was to contribute to society in a meaningful way. despite the discrimination that i experienced as an autistic child because of my limited speech ability and the social and emotional challenges i encountered, i developed the courage to defy the odds and prove to the people who had judged me as a separate entity based on my differences that i could complete my phd and become an advocate for neurodiversity rights at the highest political level (gouws 2022). this has motivated me for the past 7 years to participate in social activities for the benefit of society by engaging with organisations that provide autistic adults with platforms to share their stories, such as nonprofit organisations, government departments and civil society in general. my focus has included advising and contributing towards different policies regarding disabilities worldwide and in commonwealth countries to enhance accessibility for individuals from marginalised groups. also, drawing on my experiences as a neurodiverse adult, i have striven to guide parents of neurodiverse children and young adults by providing advice, encouragement and support. by recalling and reflecting on two critical incidents, i hope to highlight experiences that have shaped my identity as an international autism and disability rights activist. using the lens of bronfenbrenner’s ecological theory and objective self-awareness theory, i explain how these experiences have shaped my identity as a neurodiverse adult (härkönen 2001). this has been a journey of personal growth, and i am motivated to continue developing and evolving my advocacy initiatives and academic skills. literature review the purpose of autism self-advocacy is to empower autistic people worldwide to take control of their lives and improve society for the better (waltz et al. 2015). the history of the autism self-advocacy movement is a testament to the resilience and determination of the autistic community that emerged during the 1990s as a valid form of meaning and acceptance of the individual beyond diagnosis (zuber & webber 2019). the year 2000 brought a new development that would spark a change in the way autism was viewed. the neurodiverse movement emphasised the unique attributes and abilities of neurological differences in society (ortega 2013) and gained momentum because of the voices, determination and advocacy of the autistic community (petri 2018). according to the united nations convention on the rights of persons with disabilities (uncrpd), neurodiversity intersects with civil rights and broader disability rights. proponents from a medical perspective view autism as a disability, and as such, the neurodiverse movement outlines the message that all individuals deserve recognition and acceptance. the common perception in the 21st century is that the neurodevelopmental profile of neurodiverse individuals is regarded as a strength and not a weakness, marking a positive shift in societal attitudes and offering hope for the future (chapman & veit 2020). in saying this, self-advocacy is a powerful tool that allows individuals to express their feelings and societal position. it is a means to improve facilities and current circumstances and is crucial for advancing the autism self-advocacy movement (glumbić et al. 2022; petri, beadle-brown & bradshaw 2021). the self-advocacy movement is influenced by cultural values and location (ortega 2013). for instance, waltz et al. (2015) pointed out that some cultures in northern europe are shaped by masculine and ableist expectations, which perceive autism traits as a form of weakness and a social problem. these perceptions influence attitudes towards autism on the continent of africa too, especially in south africa. self-advocates emphasise the importance of understanding individual identity development in various settings and consider the mental health of individuals with autism, which builds resilience to persevere during difficult times (cook & purkis 2022). theoretical approach this academic article uses a theoretical approach based on bronfenbrenner’s ecological systems and objective self-awareness theory. however, the chosen methodology means that the theoretical position and the author’s personal experiences are closely intertwined. my theoretical understanding and personal experiences as an autistic individual have profoundly influenced my life and continue to do so today as they shaped my purpose in life, shifting my focus from myself to advocating and empowering the neurodiverse community. growing up, i was fortunate to have a robust support system that supported me through my different life experiences. throughout the years, transitioning from school to university, i was introduced to key individuals who provided me with various forms of support, which helped me overcome potential barriers and build resilience. looking back, it isn’t easy to compare the different levels of support from the key members throughout my life as each support figure was present at a different time. härkönen (2001), who analysed human development according to bronfenbrenner’s ecological systems theory, emphasises the importance of continuous support of family, educational colleagues, community and the working environment. härkönen (2001) highlights further that the microsystem is regarded as the most fundamental and crucial support system as it is the most consistent and basic system that safeguards the autistic individual’s emotional, social and physical well-being. this system includes family and friends. other external support systems outside the home environment, such as the meso-, exoand potentially macrosystems, include the community of practice, the working environment and international connections. with support from the different systems provided by different individuals and organisations beyond the microsystem, i was able to function. adding to the importance of the microsystem, iivonen et al. (2021) believed that although this internal support network is seen as the most solid and sustainable, it can be disrupted and potentially entangled with tragedy, such as the death of a mother. relating this to my personal story, the death of my mother was tragic and affected my psychological, emotional, social and physical functioning. however, autism self-advocacy has helped me to develop a robust support system across the micro-, meso-, exo-and macrosystems. the support i received from my wife, my mother-in-law (our carer), my postdoctoral fellow mentor, my psychologist and organisations like the greenleaf autism advocacy network, the commonwealth disabled people’s forum (cdpf) and the international council on development and learning (icdl) has been invaluable. saarinen (2004) mentioned that bronfenbrenner’s ecological systems theory is published as a childhood theory but can be related to any individual’s development throughout their life as it is deeply connected to identity development. relating to my study and the influence of support on my identity development, i see much value in the inclusion of objective self-awareness theory, developed by duval and wicklund (1973), which evaluates an individual’s progress, feelings and learning experiences in different contexts. the theory focuses primarily on identity development and how individuals cope and function with expectations in other environments, circumstances and successes (pinel & bosson 2013). taylor and suthers (2021) believed in the holistic cycle of becoming self-aware of one’s challenges, and through the support that people receive, they can overcome challenges, reduce anxiety and function in a specific environment. the differentiation stage of identity development refers to the moment an individual enters an environment with unfamiliar expectations (taylor & suthers 2021). the person simultaneously compares their personality, achievements and character with other individuals in the same environment. this action evokes emotions and feelings of jealousy, disappointment and anger towards others. the second stage of identity development is more general but refers to the transition phase (situation stage) when the individual enters a new stage of their life in which they are required to make informed decisions about life after an extreme setback but are also required to put things in place that will help them to overcome challenges (silvia & duval 2001). the recommendations or choices that the individual makes refer to building a system to support and enable them to participate in events that can improve their mental health and self-confidence. this corresponds to the stage of identity versus role confusion (silvia 2012). after making essential decisions and settling on the recommendations they make, the individual will have gained experience (permanence) and become independent and goal-orientated when it comes to setting personal goals of achievement and making informed decisions (silvia 2012). the final two goals are to achieve persistence and meta-self-awareness, when the individual will remain consistent and attain personal pleasure and satisfaction (keats 2010). in the case of my study, autism self-advocacy changed my life positively. after coming from a very dark place in my life, i needed a solid system that would support me by opening doors to share my story on various platforms locally and internationally. some of my co-constructors in this study are actively involved in the field of neurodiversity, and through their involvement in my autism self-advocacy journey, they volunteered to participate in my research. research methods and design i selected critical autoethnography as my methodology to reflect on my self-advocacy journey. this genre is evocative, which enabled me to articulate my experiences and engage in cultural, political and social research (ellis 2004). by sharing my personal experiences as a researcher, i critiqued cultural beliefs, practices and experiences related to a particular phenomenon, such as my autism self-advocacy journey. the benefit of choosing autoethnography as a methodology, as explained by butz and besio (2009), is that the researcher is granted an opportunity to speak from different positions by expressing the richness of the data generated from their fieldwork. by looking at the data ethnographically, the author scrutinises and publicises the data by reworking it to formulate their understanding of the wider world. in other words, the methodology involves deep and mindful self-reflection, balanced by intellectual and methodological rigour, and a desire to seek social justice and improve lives. importantly, the researcher must be prepared for unexpected emotions to occur when specific memories are revisited. the transformative power of this research process enlightened me and inspired me to continue studying my advocacy journey (adams, ellis & jones 2017). concerning the study on which this paper is based, the critical incidents were carefully selected to represent pivotal moments that shaped my career as a self-advocate for autism. i revisited these key critical incidents, both positive and negative, to gain a deeper understanding of their impact. data from these critical incidents were collected through conversations and self-interviews that focused on specific periods during my journey. autoethnography as methodology, while inherently personal and subjective, is susceptible to bias (adams et al. 2017). although it yields rich insights and diverse perspectives, the findings may lack generalisability because of my unique lived experiences as an autistic individual. the selection of critical incidents was informed by personal reflection; however, incorporating the contributions and memories of co-constructors (whose names are anonymised) introduced additional variability and a unique perspective that validated their inputs. re-examining sensitive memories related to discrimination and mental health challenges further complicated the objectivity of my research. in addition, i conceptualised the concept of time mapping to guide my evaluation and planning (reflections). in doing so, i followed six steps. the first step was to identify the criteria for the potential co-constructors with whom to have critical conversations. the second step enabled me to re-look at the data generated from the essential discussions and structure them accordingly. the third step included re-seating and dividing the transcribed data into selected time frames. lastly, the map was analysed to see how the central ideas were interrelated (trochim 1989). in a later publication, trochim and mclinden (2017) acknowledged that ideas or hunches represent these ideas in an objective form in which the constructors’ thoughts are interpreted, and meaning is generated. the content of the concept time map was wholly determined and dependent on the selection of my co-constructors, who were present at different times during my advocacy journey. as the main co-constructor, i needed to be objective about the opinions and views of my co-constructors of that period, as the methodology provided them with a platform to reflect and be honest. i comprehensively reviewed the data generated from the critical conversations and analysed it according to the different time frames i had selected for this study. for preparation purposes, the different discussion points (similar to research questions) were emailed to each co-constructor before the critical conversation to serve as a guide. for each co-constructor, the discussion points were constructed differently because of the different roles that each one had during the specific time frames. the critical conversations were held on platforms such as ms teams and zoom at the convenience of the co-constructor. there were four main points of discussion points, each of which led to another based on the perceptions and perspectives of the co-constructors when reflecting on their journey with me. the process described here is one of many ways to accomplish concept mapping of time. novak (2012) suggested that the advantage of the concept mapping of time is that it is much easier to follow than verbal or written descriptions, and it is more structured; it is referred to as a hierarchical ‘tree’ structure with superordinate and subordinate parts (primary, secondary and tertiary ideas). the map typically begins with a word, concept or phrase representing a focus question and requiring an answer. link lines are then provided between the hierarchical concepts from top to bottom (clayton 2006). in figure 1, the link line (highlighted in blue) links the different sub-themes (influential events) that shaped my advocacy journey. figure 1: diagram of the concept map of time with critical incidents. the two main critical incidents were depicted together with other crucial critical incidents in figure 1. the link line represents: (1) building resilience during times of disappointment; and (2) the first steps in my journey to self-advocacy for autism, locally and internationally. my introduction to autism self-advocacy with critical moments shaped my identity and built my resilience, which helped me grow into the autism self-advocate i am today. critical incident 1: building resilience in times of disappointment following childhood, i grew up to be an assertive young adult. i always believed that i was not accepted based on my differences, as i was a victim of emotional abuse and was bullied throughout my life. i had a solid support system in the form of my late mother and my father, who supported me academically, emotionally, financially and socially and contributed to building my resilience, especially my mother, who continued to help me throughout my school career to ensure that i coped academically. even though i was nonspeaking until the age of 15, my mother did not believe in excluding me from the school environment. i did not resist avoiding any form of discrepancy and overcoming the odds against me, as i always thought that i was worth more, that i had a voice and that i needed to exceed my expectations. as bekhet, johnson and zauszniewski (2012) noted, resilience is a dynamic process that encompasses positive adaptation within the concept of adversity, and this corresponded to my motivation to prove critics wrong. being highly motivated, i was determined to enrol at university, believing it would be the start of my upward journey, although my first 3 years at university were an uphill battle. however, i was determined to persevere and develop my skills, which led to my enrolment in a residence, which was the start of my self-advocacy journey. the residence house: propelled to self-advocacy, the beginning as i got used to the residence environment as a third-year student, i challenged my resilience by standing for election to the house committee. initially, i was concerned that i was not popular and that i did not have the support of my fellow students because of my differences. each candidate was required to deliver a short speech during the annual house committee circus on the campus of the faculty of education. as usual, i discussed my participation with the university psychologist. during our therapy session, he questioned my intention to run and we discussed how i would handle the potential disappointment if not elected. he also warned me of the harshness and judgements that students could face (gouws 2022). on the night of the house committee circus, my anxiety levels were very high, but i knew i had to maintain them. despite the crowd’s silence, hesitation and laughter, i gave my speech and answered the questions directed at me. when a participant questioned my ability to lead as an autistic person, i responded confidently, highlighting my commitment to making an impact and a difference. i ended my speech with the following lines: ‘don’t judge a book by its cover’. that response earned me a standing ovation, and i was delighted to finally receive the acceptance i had sought for years. this moment was pivotal and shaped the building blocks of my journey towards self-advocacy for autism. that inner voice was verbalised. although i was not elected to the house committee, my satisfaction overruled my disappointment. however, i knew that disappointment in the future would be as hard as the continuous rejection that i experienced, which affected my mental health, so i attempted to commit suicide (gouws 2022). attempt to commit suicide research by jackson, hart and volkmar (2018) shows that individuals with asd have higher rates of loneliness, anxiety and depression than typical individuals. in this study, of the 30 individuals with autism from a prominent university in the united states who were interviewed, 17.9% of the total sample thought that it was very likely that they would attempt suicide. based on my personal experiences as an autistic student living in south africa, unfortunately, i was part of the attempted suicide statistic, as i reached a moment where i considered ending my life by overdosing on over-the-counter sleeping pills, of which i took six. the hospital psychologist reflected: ‘i can remember that your mom told me that you were studying and that your mental health was not good. you were experiencing depression and anxiety. from what i have heard, you were experiencing a severe rejection from society. you had trouble deciding who you were and where you would fit in. there were some warning signs of suicide that i noticed.’ (participant 1, hospital psychologist, female, age 40–50 years) i was rushed to the nearest hospital by my mother and spent 3 days in the icu because of the development of arrhythmia (a medical condition in which the heart beats at an uneven rate). during my admission to the hospital, the psychologist and my mother decided to admit me to the psychiatric ward because an attempted suicide justified it: ‘at that point, the risk of suicide was on the table, and i decided to hospitalise you because i did not want to take a risk. it was quite a shock to your mother, so she decided it was the best. luckily, because i worked in the hospital, i could see you every day, and we had pretty intense therapy sessions.’ (participant 1, hospital psychologist, female, age 40–50 years) after my short stay in the icu, i was released, and the hospital psychologist booked me into rehabilitation for 2 weeks (up to 21 days) to receive therapy. during counselling sessions with the psychologist and other activities, we discussed the situation and different coping mechanisms to deal with rejection. to improve my self-confidence, the psychologist recommended that i speak to parents and fellow autistic adults who had experienced the same challenges as me. after numerous sessions, i thought about the psychologist’s suggestion and discussed it with my late mother. we both decided that at that stage, it was the best decision for my mental health and my self-confidence. critical incident 2: the first steps on my journey to self-advocacy for autism, locally and internationally after returning home from my hospitalisation, i was determined to recover and share my story with other parents. hours of research led me to discover various organisations that offered training for parents with children on the autism spectrum. i contacted the greenleaf autism advocacy network, the largest nonprofit organisation representing individuals living with autism in south africa, seeking guidance and opportunities to contribute to its advocacy events. one of the first points of contact with an organisation that supports adults and parents with asd is the sun society, nationally and internationally. the therapist named stefan, who was the lead contact in south africa, contacted me by email and wanted to meet me and my late mother. during a critical conversation with him, he remembered our initial meeting and made suggestions as to how i could participate in autism self-advocacy and start my healing journey: ‘it was early in 2018. i met you with your mother after she contacted me. our big question during that time was, ‘how can we support you or find a way to help you?’ it was clear that you were looking for bigger things, and your mom also knew that which encouraged me to introduce you to christine from the greenleaf autism advocacy network.’ (participant 2, therapist, male, age 30–40 years) during a critical conversation with christine, the director of the greenleaf autism advocacy network, she reflected on our introduction meeting, which my late mother attended with me: ‘i wanted to hear from you and appreciated what you had to say. you were kind, open and willing to talk to me. i was hesitant due to my experience with autism self-advocates. as you may know, the others i was involved with were aggressive keyboard warriors. so, for me, it is more about the impact you had on my life, knowing that not all autism self-advocates have the same perceptions and points of view. you were different because you were open to listening.’ (participant 3, director, female, age 40–50 years) the director, christine, generously extended opportunities for me to participate in autism advocacy, including speaking at small autism awareness campaigns and other events, such as their annual national autism symposium. i actively participated in events such as autism awareness and acceptance month (02 april), contributing through newspaper, television and radio interviews and addressing parents, teachers and autistic adults. each media appearance and training session significantly improved my self-confidence and sense of worth. my appearance on the fourth season’s second episode of a prominent talk programme in south africa was a significant milestone. as one of the four interviewees, i shared my personal experiences as an adult on the autism spectrum and discussed my ongoing master’s studies. this exposure amplified my realisation that i had a bigger purpose and a compelling story to share. the overwhelmingly positive response from family members, university staff and the greenleaf autism advocacy network confirmed the impact of my television interview. it became apparent that overnight i had gained recognition as a prominent autism self-advocate on a national level. from being exposed to different media and autism self-advocacy platforms, i presented my story at a public event hosted by the province where i reside as part of the autism awareness and acceptance campaign as keynote speaker in 2018 and 2019. beyond 02 april, these events are significant for the autistic community, as they bring together representatives of various organisations, individuals on the autism spectrum, university officials, school principals and provincial administrators. sheri, an inclusive education specialist at the provinces department, invited me and my mother to present. sheri recalls the first moments of organising the event and about my aspirations to advocate for autism: ‘i organised an autism awareness event at a school in the province. it was the first event hosted by the province aimed at professionals and parents. on both days, you presented first, followed by your mother. when i first met you on the morning of the event, you were timid and reserved because it was your first time speaking in front of professionals and parents. hearing your story was vital to me.’ (participant 4, inclusive educational therapist, female, age 40–50 years) the event was supported by senior government officials who delivered the annual address to school officials in the district and province. the speech of the minister of education was received with the most tremendous respect, as it addressed the crucial issues facing schools and proposed solutions. i had the privilege of meeting the premier, who commented on my advocacy efforts and boosted my self-confidence. as a first-year specialist teacher, i talked about my experiences as an adult on the autism spectrum. although the premier could not attend my session because of other commitments, i received numerous compliments for my presentation, during which i shared personal experiences as an individual on the autism spectrum and its impact on my family. the event and day were memorable for my presentation and the awareness of autism that i created provincially and nationally. the second conference i attended, which created a platform for me to share my story, was the national autism symposium for health care professionals, educators, social workers and fellow autistic adults at the university of the south. this conference had a distinct academic essence. it focused on sharing research findings and lived experiences among autistic adults and parents. interestingly, this collaborative event was where i met my best friend, another autistic adult, who later became my wife. my presentation, ‘regulate and manage meltdowns’, was a significant part of the symposium. as this was my first major national autism awareness conference, i was very nervous and needed help and guidance to engage with the audience and make an impact. steve, a fellow presenter at the symposium, provided advice and assistance the night before my presentation in the hotel room where we stayed together. as we reflected on my journey as an autism self-advocate, he said that he believed that my future was bright and that i could make a difference in the field in south africa: ‘my perspective was based on your qualifications and your life story. by participating in advocacy opportunities, you would get the necessary exposure. within this environment, you would meet people who work in the same environment and can help you reach that level. education specialists, therapists, psychiatrists, medical doctors, and all people in the field help expand your network, and you can make a positive contribution by showing people that autism has some positive components. you are an example for many people in the same position as you can follow.’ (participant 5, autism self-advocate, male, age 50–60 years) steve’s opinions could not be closer to the truth as the greenleaf autism advocacy network asked me to represent south africa, the organisation and autism at the united nations in new york the following year at a side meeting hosted by the commonwealth at the 12th session of the united nations congress of state parties in new york in 2019. this meeting marked the relaunch of the cdpf. it was an experience that i would enter for the first time. to comply with uncrpd regulations, my brother accompanied me as a personal assistant for the trip. at 26, i was in my second year of autism self-advocacy, starting as a specialist teacher at a mainstream school, completing my master’s degree, and beginning my first year of a doctorate in education. attending the general assembly of the congress of state parties was overwhelming, especially realising that i was in the same building where nelson mandela addressed the united nations, where he acknowledged the uncrpd. the schedule was packed, and the participants chose sessions to attend. the cdpf meeting at the ford foundation was notable. representatives from 27 commonwealth countries attended the meeting, which focused on reviewing constitutions, developing declarations and electing executive committees. i attended executive meetings, recruited organisations to strengthen the cdpf and represented the organisation at key commonwealth and united nations meetings such as the commonwealth heads of government meeting (chogm) 2022 in rwanda. the cdpf nominated me for the commonwealth youth awards based on my contribution to this event. as an autism self-advocate, my international profile grew tremendously in just a few years with every international speaking opportunity, such as my introduction to the icdl which came into my life during a critical stage as it was days after my late mother passed away. during this time of grieving, i needed to establish my identity once again and rediscover the importance of autism self-advocacy, and by connecting with icdl, i would eventually understand the impact that i made in families’ lives. my connection with icdl eventually started during the coronavirus disease 2019 (covid-19) pandemic when i applied to participate in their symposium. the chief executive officer of the icdl, paul, reached out to appreciate my application and invited me to attend one of their teaching courses. little did i know that this was the start of a sustainable friendship and the beginning of a life-changing journey. paul remembers those moments: ‘i remember seeing your conference proposal and immediately sending you an email saying it was accepted. something about it moved me, and i felt that people needed to hear from you. i remember that at our first zoom meeting, i thought you were a person who could influence me as a leader. you were valuable and could contribute to the mission of icdl.’ (participant 6, chief executive officer, male, 50–60 years) after our first official meeting, paul and i met virtually at least once every 3 weeks to discuss my experiences as an adult on the autism spectrum in the global south. the discussion was informal and informative, and paul and i formed a unique bond. more importantly, it rebuilt my self-confidence, knowing that an international organisation and an influential leader found value in my contributions. following my impactful presentation at the first icdl conference, regular meetings were held with paul, resulting in an advisory role and an invitation to become a board member and later the selection as president of the board of directors. by holding the position of president, i was granted opportunities to feature in international publications such as forbes japan. with every opportunity i received from paul and the icdl, my confidence grew. paul witnessed my growth first-hand, and it encouraged him and his fellow board members to nominate and elect me as the president of the board of directors. paul recalls: ‘watching your voice develop is a fascinating experience. the development of your values and the values that your mother and father instilled in you and all those values remain. when thinking about floor time and developmental, individual differences, relationship-based (dir), we talk about developing the core competencies of human development. it is not about learning skills but more about interacting with stress, working with others, problem-solving, formulating ideas, putting them together, and doing your doctorate work. watching those competencies develop and be foundationally there because of your experiences and for those to continue to evolve.’ (participant 6, chief executive officer, male, age 50–60 years) advocating for autism has allowed me to speak on international platforms, travel extensively and meet influential politicians and prime ministers. on a more personal note, it has also led to my postdoctoral fellowship and meeting my now-wife. it has also helped me build a support network that has been invaluable in various aspects of my life. ethical considerations ethical clearance to conduct this study was obtained from the university of south africa (unisa) college of education ethics review committee (no. 2024/02/14/90548221/43/am). to protect the identity of my co-constructors, their names and the organisations mentioned have been changed to pseudonyms. the co-constructors were fully informed about the intentions and purpose of the study, and they provided their consent willingly to participate in this study. they also had the freedom to withdraw from the study at any time. as sensitive topics and past experiences were revisited, steps were taken to safeguard everyone’s emotional well-being. firstly, my co-constructors were notified of the questions ahead of the online conversations for preparation purposes. secondly, i was mindful of the emotional impact of some of the questions and reaffirmed that professional support was available if needed. overall, respect and honesty were central to this study as my co-constructors’ contributions were respected and integrated into the research. discussion throughout my years as an autism self-advocate, i have come to realise that my advocacy has a much broader purpose than just advocating for myself. now, i see myself as an advocate for the entire neurodiverse community. in the past, i always aimed for my advocacy to be worth it, even if it inspired just one person, such as a parent at an informational meeting. i have been fortunate to have opportunities for advocacy through organisations like the greenleaf autism advocacy network, the cdpf and icdl, both locally and internationally. through autism self-advocacy, i received opportunities to develop my leadership skills by being elected to the different executive boards. however, it was not until i attended an international autism awareness and acceptance seminar in april 2024 that i fully realised the impact i have had on the autism community and their families. a parent i had never met mentioned during her presentation that witnessing my graduation with a phd had considerably raised her expectations for her children. this was a significant confidence boost for me. i also realised that my work could be valued in academia as a researcher, especially by publishing articles and first-hand accounts from my perspective as someone from the global south and a developing country like south africa. attending higher-level political meetings at the united nations and commonwealth level as a civil society representative has made me aware that the global north mainly dominates autism research, and the global south relies heavily on this research. this highlighted the importance of research in gaining the confidence of key role players and politicians to ensure more inclusive policies for individuals living with asd. according to pellicano and den houting (2022), autism self-advocates are central figures in the promotion of neurodiversity, challenging the stigma and discrimination associated with autism by reframing the diagnosis as a variant rather than a social problem. the neurodiversity movement is closely linked with social justice and echoes the broader disability and civil rights movements (hughes 2016). transitioning to the role of a researcher, i see my contributions to research as eliminating the gap in the global south by publishing first-hand accounts, but more importantly, how we can make public facilities such as universities more inclusive and accessible for all individuals with autism based on the institutions such as the uncrpd, the commonwealth charter and the global sustainable developmental goals when it comes to reasonable accommodation. ward and meyer (1999) explained that self-advocates for autism advocate for their civil rights and educate society to dispel prejudice and discrimination. however, the uncrpd is a comprehensive international treaty aimed at protecting the rights of persons living with disabilities, especially those with asd and their carers. there is still a significant gap when it comes to the focus on mental health and the support services available to support autistic individuals, which shows that there is limited data and research available on the mental health and support of autistic individuals in the global south, especially in south africa. discrimination discrimination is mistreating an individual based on their attributes and actions (altman 2011). people living with asd who are different and socially and emotionally vulnerable can become victims of discrimination and victimisation (o’riordan & passetti 2006). research by o’riordan and passetti (2006) indicates that individuals with asd are often discriminated against because of their experiences of inequality. rosenblatt (2022) emphasised that individuals with autism have a responsibility to advocate against discrimination in various environments. growing up, i encountered discrimination, including assumptions that individuals on the spectrum could not hold leadership positions. one incident that particularly affected me was when i advised the students in the residence who questioned my candidacy to stand for the house committee to ‘not judge a book by its cover’, meaning that people are often judged based on their appearance and behaviour. unfortunately, discrimination against individuals on the autism spectrum is common, leading to mental health challenges and, in severe cases, depression and suicidal thoughts (chown & beavan 2012). i can relate to this, as my feelings of not belonging because of societal misconceptions about my differences led me to attempt suicide. society’s perceptions of people like me align with the medical paradigm, assuming that individuals with disabilities, including those with asd, can be healed through medical treatment or therapy (chown & beavan 2012). autism self-advocates aim to challenge this medical model and promote a social approach emphasising inclusion, acceptance and reasonable accommodation. as i delved into the journey, my self-confidence was low. i sought acceptance and validation so i encouraged my late mother to reach out to organisations like the sun society and the greenleaf autism advocacy network to provide me with a platform to share my story and inspire other parents and autistic adults. each opportunity to speak, locally or internationally, reaffirmed my purpose to inspire and empower others. the feedback from these engagements was overwhelming. it underscored the realisation that beyond academic achievements, i have a meaningful role as an individual on the autism spectrum to contribute to society. organisations like the greenleaf autism advocacy network and icdl have appreciated the personal experiences i brought to each speaking opportunity. after each speaking opportunity, parents expressed gratitude and hope for their children’s future after hearing my presentations, reinforcing the altruistic purpose of my advocacy work. the role of autism self-advocacy and the building of resilience throughout my life, i have demonstrated resilience by persevering through challenging situations, such as achieving success in school, university and advocacy. this resilience would not have been possible without the support i received from my mother, and now the support i receive personally and professionally from my family and my mentor for my postdoctoral fellowship, which i gained through my advocacy journey. i have transitioned from being assertive and insecure to progressing emotionally and socially, becoming self-aware of the benefits of my autism self-advocacy for my mental health and emotional well-being. my accomplishments, including completing school, attending university, obtaining a phd, speaking at international conferences and serving on international directorial boards, represent strength, power and promise. the resilience that i have implemented has helped me to develop the ability to cope, overcome and act in times of adversity (hermann et al. 2024). hermann et al. (2024) defined resilience as maintaining and regaining mental health despite experiencing hardships and adversity. through autism self-advocacy, i have gained the skills to organise international autism awareness and acceptance events at a higher political level. i have realised the importance of providing platforms for all individuals living with asd to have their voices heard, not just higher-functioning adults. organisations should recognise the diverse experiences within the autism community and provide equal opportunities for all individuals to advocate for their rights. following the social model of persons with disabilities, organisations need to create platforms for individuals with different neurodiversities to advocate for their rights. by providing these opportunities, i can now mentor young self-advocates and help them develop their competence, courage and self-advocacy skills. autism self-advocates can build connections that form a part of their own personal ecosystem, contributing to a sustainable network of care for autistic individuals. it is also crucial for individuals to relate to people who understand autism diagnoses in order to provide the necessary accommodations. this support network aligns with bronfenbrenner’s ecological systems theory, forming part of the autistic individuals’ micro-, meso-, exoand macrosystems based on the level of support they need and their self-advocacy efforts. my autism self-advocacy has provided me with the opportunity to build a strong support network and has helped me to formulate my identity. i aim to set an example for others by emphasising the value of support in advocacy efforts. conclusion this article primarily focuses on my journey from being an autistic adult to becoming an autism self-advocate. this journey has shaped my identity as an autistic adult, postdoctoral fellow and international disability advocate. through autism self-advocacy, i have found my voice, developed the ability to speak at the highest political level and learnt about disability rights and responsibilities. my experiences have inspired parents to continue supporting their children and raising their expectations for them. at present, my autism self-advocacy supports my research career by providing insights into the topic and helping me gain contacts for potential research initiatives and projects. furthermore, my autism self-advocacy journey has exposed me to the broader neurodiversity community, shedding light on the daily realities of individuals on the autism spectrum. i have also become aware of the high unemployment and suicide rates among neurodiverse adults in south africa. through my participation in higher political meetings, i have understood the importance of sharing the experiences of neurodiverse adults and family members to make policymakers aware of the challenges that those on the autism spectrum face. this article stresses the value of support and shares the experiences of those who have contributed to my advocacy journey. acknowledgements the author would like to acknowledge the critical feedback received from the mentors, prof. mary clasquin johnson, prof. michel clasquin johnson and prof. ensa johnson, and the language editor, dr brenda gouws, on the draft and final article. he would also like to thank the co-constructors who participated willingly in the research. competing interests the author declares no competing interests that could have influenced the research presented in this article. author’s contributions e.g. declares that they are the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability if necessary, the research data can be shared. the data that support the findings of this study are available on reasonable request from the corresponding author, e.g. disclaimer the views and opinions expressed in this article are 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design results and discussion conclusion acknowledgements references about the author(s) aditya d. pratama school of environmental sciences, universitas indonesia, jakarta, indonesia vocational education program, universitas indonesia, depok, indonesia rachmadhi purwana school of environmental sciences, universitas indonesia, jakarta, indonesia jan sopaheluwakan school of environmental sciences, universitas indonesia, jakarta, indonesia diaz pranita vocational education program, universitas indonesia, depok, indonesia bintang m.b. akbar vocational education program, universitas indonesia, depok, indonesia citation pratama, a.d., purwana, r., sopaheluwakan, j., pranita, d. & akbar, b.m.b, 2025, ‘design model for inclusion of resilience in children with cerebral palsy’, african journal of disability 14(0), a1715. https://doi.org/10.4102/ajod.v14i0.1715 original research design model for inclusion of resilience in children with cerebral palsy aditya d. pratama, rachmadhi purwana, jan sopaheluwakan, diaz pranita, bintang m.b. akbar received: 07 mar. 2025; accepted: 15 aug. 2025; published: 08 oct. 2025 copyright: © 2025. the author(s) licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: regarding the continuity of life, people with disabilities require various forms of assistance to fulfill their rights to survive and be sustainable. children with cerebral palsy (cp) disabilities have not yet had their social, economic and environmental rights fulfilled as people with disabilities. this condition drives the need to create an inclusion model for the resilience of children with cp disabilities to provide a competitive advantage in quality and empowered human resources. objectives: this study aimed to explore the important factors and strategies for enhancing the resilience of children with cp. method: the data used in this study are based on the penta helix (government, community, practitioners, society and academics). the soft system method was chosen to analyse the study’s problems. results: inclusion for resilience in children with cp disabilities has excellent potential to be optimised by managing several important factors, including policies, databases, health, social aspects, infrastructure and education. conclusion: this can be achieved through genuine collaboration among key stakeholders: the government, society, medical professionals, communities and academics. with genuine collaboration and implementation, the target of resilience inclusion for children with cp will be achieved with good physical and mental health and quality of life. contribution: this study provides new and more comprehensive knowledge about the key factors and strategies to enhance the resilience of children with cerebral palsy disabilities. keywords: cerebral palsy; disability; inclusion; resilience; sustainability. introduction in the modern world, the health issues of persons with disabilities rarely receive adequate attention from the government, businesses and society in general (wiryawan 2022). people who have experienced physical, mental, intellectual or sensory limitations for a long time and have faced various challenges may find it difficult to fully participate and succeed in a society where everyone has equal rights (widhawati, santoso & apsari 2020). there are more than 1 billion people with disabilities worldwide, with 82% of them living in developing countries, living in poor economic conditions, facing high levels of violence and belonging to the most marginalised groups (rifai & humaedi 2020). more than 37 million persons with disabilities live in indonesia, with 17 million of them being children and adults (united nations 2020). people with disabilities are vulnerable to challenges and issues that limit their fulfilment of life’s rights. in terms of life sustainability, individuals with disabilities require various forms of assistance to fulfil their rights so that they can survive and be sustainable (figueiredo et al. 2023). as one of the countries that has adopted the convention on the rights of persons with disabilities (crpd), indonesia is committed to realising the rights of persons with disabilities. this is regulated in article 3, paragraph 1 of law no. 8 of 2016 concerning disabilities, implementation, and fulfillment of the rights of persons with disabilities. the purpose of this law is to realise respect, promotion, protection and fulfilment of human rights, as well as equal basic freedoms for persons with disabilities. previous research results still overlook and have not yet addressed a more holistic problem-solving approach involving pressure and release or reversal actions to eliminate, reduce, avoid and resolve the present root problems (chen et al. 2014; jawed & mowry 2023; noten et al. 2021; ungar et al. 2007). additionally, a socio-demographic approach from each country is needed. therefore, further research with a sociodemographic approach and appropriate modelling methods is urgently needed. in the end, the development of a resilience inclusion (systems and policies that not only ensure equal participation but also build community capacity to survive and thrive in the face of challenges, whether social, economic or environmental) model for children with cerebral palsy (cp) disabilities will be one of the steps to enhance the resilience of children with cp disabilities. all these issues have driven the need to develop a specific model to provide insight into the inclusion of resilience for children with cp disabilities. the model is a comprehensive study of cp disabilities by examining factors included in the pressure model (root cause, dynamic pressure and unsafe condition) and the release model (addressing root causes, reducing pressure and achieving safe conditions) from social, economic and environmental aspects and involving individual aspects as an integral part of problem solving (wisner et al. 2004). essentially, the model aims to provide a comprehensive understanding of cp disability through two primary approaches: the stress model and the release model. the stress model identifies factors that exacerbate cp, including medical root causes, social and economic pressures and unsupportive conditions. meanwhile, the release model focuses on solutions to address the root causes, reduce pressure and create a safe and supportive environment for patients with cp. this approach can reduce the impact of disability on individuals with cp through holistic changes in medical, social and environmental aspects. theoretical framework the theoretical framework in this study uses the pressure and release model approach, which is one of the appropriate approaches for persons with cp. based on the literature review and information collection, a comprehensive person with cp model that identifies and analyses factors related to the pressure model (root cause, dynamic pressure and unsafe condition) and the release model (addressing root causes, reducing pressure and achieving safe conditions) has not been performed. studies on existing cp issues include the following: (1) ungar et al.’s (2007) resilience model, which describes resilience resources in seven components. this model has not yet explored and linked the existing categories of resources. in addition, a priority scale based on the root causes and problem priorities has not yet been created. (2) the international classification of functioning, disability and health (icf) (chen et al. 2014) model evaluates the determinants related to children’s activities, followed by body functions, structures and family factors. however, it does not evaluate factors related to participation and the children themselves. (3) the international classification of functioning, icf model (noten et al. 2021) is viewed from the framework of the world health organization’s icf, which serves as the basis for global health communication. however, this model focuses only on activities, body functions and structures. this model only represents adult cp disabilities; therefore, risk mitigation and related transitions during childhood over time and participation need to be considered. this model has not yet considered each country’s social and cultural conditions and socio-demographic characteristics, especially indonesia. in addition, there is a lack of participant involvement and facilitation of individual and collective decision-making. (4) the american academy of pediatrics (aap) model, in the 2022 clinical practice guidelines for cp (jawed & mowry 2023), includes various considerations aligned with the biopsychosocial model, risk and resilience, as well as family-centered services, and promotes a more strength-based approach in care. this model has not yet considered operational considerations (e.g. finances and staffing), funding and community engagement in ensuring sustainable access to timely and necessary services for patients with cp from the onset of diagnosis as a measure of sustainability in cp care. although this model is quite good, it still neglects and does not consider a more holistic approach to problem-solving through pressure and release and/or reversal actions to eliminate, reduce, avoid and mitigate the root causes of existing issues. additionally, a socio-demographic approach from each country is needed. this study focuses on indonesia, specifically in jakarta province, by analysing the region’s context and relevant issues. suppose the death of a person with cp disabilities is considered a disaster. in that case, this research aims to build a disability inclusion model through a risk mitigation perspective that is expected to minimise the risk of hazards that will occur and minimise hazards such as reducing the physical capacity of cp, declining health conditions of cp and even the worst case, death. research methods and design study design this research designs a model to provide a foundation for developing resilience inclusion for children with cp through a qualitative approach. study population and sampling strategy the primary data in this study refer to the penta helix model involving five entities: (1) government, (2) practitioners, (3) academics, (4) society, and (5) community. three individuals represent each expert group. data collection data were obtained through intensive interviews supported by literature studies from appropriate and credible sources and through the distribution of closed and open questionnaires. the source has approved the data obtained to be used as data in this research. data analysis the analysis method used in this study is the soft system methodology (ssm). williams (2005) explains that ssm emphasises solving something complex by providing explanations and synthesis to get the best answer. zarei, azizian and ghapanchi (2013) emphasised the use of ssm to build and develop models. daellebach and mcnickle (2005) explained that ssm is the proper method for comprehensively explaining the conditions and development plans of the objects studied. soft systems methodology is an approach to solving complex and unstructured problems by involving stakeholders in the problem-solving process. a quantitative approach is not necessary because ssm is sufficient to provide a deep understanding of complex problems. soft systems methodology emphasises holistic system analysis by considering qualitative aspects, such as the views and perceptions of various actors within the system and the interactions between the elements involved in the social, cultural and organisational context. the ssm approach involves problem identification, system model development, stakeholder discussions, solution evaluation and implementation to solve complex problems by considering various social and human perspectives. ethical considerations ethical approval for conducting this research was obtained from the ethics review committee of the school of environmental science, universitas indonesia on 02 august 2024 (no. ket-081/un2.f13.d1.ke1/ppm.00/2024). results and discussion the soft system technique stages outlined by checkland and scholes (1991) encompasses seven distinct phases. the initial phase completely and systematically outlines the challenges encountered; information is gathered from stakeholders within the inclusion of resilience in children with cp throughout this phase. the second phase delineates the problem’s context with the data acquired from the previous stage. the outcome of this phase is the formulation of a detailed depiction of the current circumstances within the item. the third phase involves identifying the issues encountered by the study subject. the foundation for this identification, using the p strategy, is conducted through q to obtain r. in the fourth phase, the customers, actors, transformation, worldview, owners, and environmental constraints (catwoe) describe and connect several important parts that can be involved. in the next phase, the built design is compared with the actual design. the comparison activity is intended to determine the possibility of maintenance, repair or evaluation. the initial stage of the ssm involves the description of the problem scenario. at this initial stage, social analysis is conducted to examine the suitability, patterns, interests and logic of relevant and appropriate events (rouse & daellebach 2002). this phase emphasises understanding each informant’s circumstances and interests (fitriati 2015). hardjosoekarto (2012) explained that the initial stage emphasises actual social conditions as the basis for the change plan. standardisation is carried out by categorising the obtained data. checkland and poulter (2006) explained that three aspects need to be explored, namely, norms, roles and values as a fundamental basis. the basic concept of standards for evaluating each stakeholder’s role is called value. norms refer to the behaviour expected of actors in their roles, whereas roles represent the social position that characterises individual actors. based on social analysis, several conflicts hinder the process of inclusive development for children with cp disabilities, including the following: the lack of synergy among government agencies persists because the inclusive development process remains hindered. this condition is attributed to suboptimal coordination among relevant government agencies, including the ministry of health, the ministry of education and other social institutions. the lack of policy alignment between agencies results in fragmented and less practical inclusive services provided to children with disabilities, especially those with cp. lack of inclusive medical and educational personnel affects the quality of medical care and the educational process that can optimally support the development of children with cp. the addition of experts with specialised skills in handling children with special needs is essential. the current inclusive policies are not comprehensive and detailed enough to fully accommodate all aspects required by children with disabilities. more specific and comprehensive policies are needed to support the development of inclusion, including the provision of accessible facilities, strengthening the inclusive education system and broader social support. social movements that support the inclusion of children with disabilities must be strengthened to encourage policy changes and their implementation. policy advocacy communities must provide strong encouragement so that the inclusion process can be effectively implemented. this movement must involve various parties, including the community, non-governmental organisations and the government sector, to advocate for the rights of children with disabilities. aligning the understanding of disability among all parties, including the community, medical professionals, educators and policymakers, is a crucial factor in developing inclusive practices. uniform awareness of children’s rights and needs will strengthen collective efforts to create an inclusive environment and support their optimal development. political analysis was conducted to obtain a view to group the actors’ power in determining the occurrence of something. political analysis is intended to obtain a comprehensive picture of power and how to manage it. the discussion related to political analysis is presented in table 2. political analysis is a crucial tool for understanding and managing various actors’ influence in achieving a goal or addressing a specific issue. in the context of empowering individuals or groups, five leading actors with distinct powers are outlined as follows (see table 1): regulators have the fundamental power to set policies and regulations. they determine direction through their ability to collaborate, control, lead and sustain initiatives. the strength of regulators makes them a key foundation in empowerment efforts, as they create a framework that can enable or limit other actors’ actions. as intellectual pillars, academics play a crucial role, possessing the power to produce and disseminate knowledge and ideas and engage in public discourse. academics can also shape public opinion, encourage critical attitudes and advocate for public policy issues. the knowledge they produce serves as the foundation for innovation and evidence-based solutions. the community demonstrates operational and adaptive strength in advocacy, lobbying, mobilisation and empowerment. the community can also collaborate with external parties, provide information and education and be responsive to its members’ needs. they play a key role as agents of change at the grassroots level. society and family hold the emotional and fundamental power of emotional bonds, care and affection. family and surrounding community support form an essential psychological and social foundation for individual empowerment. medical personnel possess practical expertise and direct connections in caring for individuals, especially those with disabilities; they serve as a bridge between families and the healthcare system. their strength ensures the fulfilment of health needs and access to essential services. table 1: social analysis of inclusive development for the resilience of children with cerebral palsy disabilities. table 2: political analysis in the development of inclusion for the resilience of children with cerebral palsy disabilities. overall, synergistic management of the strengths of these actors is the key to success. regulators provide legal and structural foundations; academics contribute data and theory; communities drive real actions on the ground; families offer moral and emotional support and medical professionals ensure physical well-being and access to services. the integration of these forces is essential for effective and sustainable empowerment. the second phase of the soft systems approach delineates the issue scenario using rich visuals. at this point, relate the state and concerns of each involved stakeholder or entity. rich visuals serve as a mechanism for articulating all interactions within the system (lewis 1992). marton and booth (1996) asserted that rich graphics can facilitate many elements to provide a comprehensive explanation by combining information and processes while presenting options and inputs from each involved actor. rich pictures serve as a versatile and global communication instrument for describing the state because they have no boundaries or limitations (horan 2000). all information obtained from experts is extracted into a rich picture. this is intended to describe the condition of resilience inclusion in children with cp disabilities. the preparation of a rich picture must be able to comprehensively describe the conditions that occur in an informative and easy-to-understand manner; in addition, ambiguity and misperception must be avoided. a rich picture is an important part of providing complete information to readers (rittel & webber 1973). this condition provides a challenge in the preparation process, requiring a process that is completely, accurately and communicatively prepared and avoids misperceptions (berg & pooley 2012; checkland & scholes 1991). figure 1 illustrates how inclusion for resilience in children with cp is a way to achieve high-quality and empowered human resource excellence. the government wants to improve the quality of human resources and ensure that vulnerable and marginalised groups such as those with disabilities are not left behind. however, the policies so far have not been implemented and require genuine collaboration from all stakeholders to position disabilities not as objects of commercialisation but as resources with special abilities capable of high competitiveness. figure 1: rich picture conditions and disabilities. there are several main actors in this resilience inclusion, namely (1) the government, (2) society, (3) communities, (4) medical personnel, and (5) inclusive educators, who require greater collaboration among them. the community is still rife with stigma and discrimination, as well as implementation that is not yet targeted and effective, and the number of medical and inclusive educators is still lacking. figure 1 presents a full explanation. the central and regional governments have tried to implement policies that support persons with disabilities, particularly children with cp. these efforts encompass various policies aimed at enhancing healthcare services, promoting inclusive education and fostering social empowerment for children with disabilities. significant challenges remain in implementing these policies, considering that each stakeholder, whether it be the government, educational institutions, medical personnel, communities or families, has its roles and challenges in supporting the resilience of children with cp. the challenges faced in the development of inclusion for children with disabilities include policy inconsistencies. although the government has implemented policies, their implementation is often not uniform across all regions, both at the central and local levels. this inconsistency is often caused by differences in understanding, lack of coordination between agencies and dependence on limited budgets. weak data pose a significant obstacle to evidence-based decision-making. inaccurate or inadequate data regarding the number of people with disabilities, their needs and the impact of existing policies lead to misguided and ineffective policies that fail to reach children with cp who require special attention. cross-sector collaboration among various stakeholders, such as the government, educational institutions, medical professionals, community organisations and the private sector, is needed. this collaboration is crucial for creating integrated solutions where each sector can contribute according to its specific competencies. the education sector can provide trained inclusive educators, whereas the health sector can improve the quality of medical services for children with disabilities. cross-sector collaboration can also ensure that existing policies are more consistent and applied evenly across all regions. inclusive financial support must be part of the release strategy. people with disabilities, including children with cp, often face difficulties in accessing healthcare and education services because of financial constraints. the government must implement policies that facilitate access to more affordable services, whether through subsidies, health insurance or other forms of social assistance. in addition, the private sector and society can fund inclusive programmes that provide direct benefits to children with disabilities. the next stage involves entering the system section. at this stage, a basic definition of building the inclusion of resilience of children with cp is obtained. at the bare stage, it aims to provide the following form: (1) who and who will be included? (2) who participates in the study? (3) who can be affected and who can influence it? (mehregan, hosseinzadeh & kazemi 2012). the exact verbal expression of a deliberate action system considered relevant to the investigation of the problem scenario is intended to ensure that the design is free from semantic defects; a basic definition needs a unique formula (checkland & scholes 1991). in ssm, a formulation has been prepared that can be used to construct an understanding; in this case, the pqr formula (p through q to reach r) can be used (checkland & scholes 1991). this understanding is called the root definition, which is then tested using catwoe. the catwoe concept is intended to test concepts in the root definition (mathiassen & nielsen 2000). testing is intended to create a standard of findings on the issues that occur (hardjosoekarto 2012). the root definition is as follows: model of inclusion for children with cerebral palsy through factor grouping and factor integration to enhance resilience in children with cerebral palsy. the fundamental concept established in the advancement of disability inclusion for children with cp serves as a foundation for devising a developmental system capable of attaining the desired outcomes. all stakeholders must endorse the disability inclusion development system, which is fundamental for objectivity. bergvall-kareborn and grahn (1996) evaluated the root concept by catwoe analysis to emphasise objectivity. the findings are presented in table 3. table 3: customers, actors, transformation, worldview, owners, and environmental inclusion of resilience in children with cerebral palsy. collaboration between stakeholders is important. in this case, it is necessary to create a forum for regular collaboration that implements accountability for each party. measurement is performed using 5e to obtain the expected information. the definition of expectations requires performance evaluation to ensure their suitability (checkland & scholes 1991). experts emphasise that 5e-based measurement remains important in performance evaluation (kotiadis et al. 2013). the results are presented in table 4. table 4: 5e measurement to realise inclusion resilience in children with cerebral palsy. the fourth phase of the ssm involves conceptual model creation. pereira et al. (2015) attempted to formulate a conceptual framework for the model. checkland and poulter (2006) explained that a conceptual model is based on the following: sources from the root definition and catwoe. compiling several categories of activities, each of which is related to a specific change process. a series of activities can support parties in making adjustments and activities related to the entity conducting the transformation. a conceptual model is a cognitive tool for analysing conditions and all world events (hardjosoekarto 2012). the design must be appropriate to the context, descriptive and consistent with the desired system functionality (fitriati 2015). hidayat, hubeis and sukmawati (2020) outlined several key conceptual model parameters. specifically, the conceptual model must be developed exclusively from terms contained in the basic definition, regardless of contextual relevance. if your conceptual model contains several activities or groups, these activities or groups need to be justifiably driven by terms. in preparation, choosing the right terms to describe the actions in the transformation process is necessary. this concept refers to the idea that activities in the conceptual models can be the basis for analysing related systems and formulating basic definitions of more complex conceptual models. (see figure 2): figure 2: conceptual model inclusion of resilience for children with cerebral palsy. in the fifth phase of the soft system method, the conceptual model produced is compared with practical reality. the soft system method requires alternative perspectives to improve and modify the proposed model. prasetyaningtyas (2019) explained that comparing models and their properties can stimulate discussions about perceptions and ultimately lead to beneficial changes to the model. when comparing conceptual models, it is important to identify key elements to reveal gaps in the model, such as (1) actors involved in the activity, (2) duration in carrying out the activity, (3) all activities that can be carried out, (4) opportunities for additions and adjustments, and (5) procedures for making improvements. (see table 5): table 5: real-world conditions with concepts in the resilience inclusion context for children with cerebral palsy. there are two identifiable differences between the actual conditions and the conceptual model. (1) conditions that do not exist in reality serve as an addition to the improvement of the concept being built. (2) conditions that do not exist can frustrate researchers because they are unable to answer research questions and can encourage researchers to return to the second stage to collect new data and proceed to the next stage, namely detailed description, root definition and development of the conceptual model (fitriati 2015). a different perspective is needed to improve the current situation in the world, which is a significant problem. users of soft system methods face challenges in answering performance evaluation questions during the comparison phase (checkland & poulter 2006). the natural world’s complexity poses these challenges. promoting diverse perspectives will increase the willingness to engage in radical action, leading to suggestions for change, improvement and refinement of real-world problems. framed as a resilience strategy, disaster mitigation encompasses proactive efforts to mitigate the risks and impacts of various hazards, both natural and social, to enhance the community’s capacity to recover and adapt. this concept extends beyond post-event response, focusing on preventing and reducing vulnerability before disasters occur. in the context of natural hazards, disaster mitigation includes the design and development of inclusive areas in environments that are safe from or vulnerable to disasters. this involves collaboration with all stakeholders to design and build facilities that are resilient to threats such as floods, earthquakes and fires. the goal is to minimise physical damage and casualties while ensuring accessibility for all individuals, including those with disabilities, during and after a disaster. social hazard mitigation focuses on raising community social awareness to create an inclusive social environment. this involves large-scale campaigns and social movements aimed at increasing social inclusion and mitigating the impact of non-physical hazards, such as discrimination, negative stigma or lack of knowledge, which can have significant psychological and mental health impacts on vulnerable groups. thus, disaster mitigation as a resilience strategy is not only oriented towards physical protection but also towards strengthening social cohesion and the adaptive mentality of society as a whole. conclusion the development of inclusion for the resilience of children with cp disabilities requires strategic approaches and steps that can achieve high-quality and empowered human resource excellence. in this context, the alignment of concepts and future views is essential for the collaboration between stakeholders. this condition allows stakeholders to work more effectively and efficiently to implement resilience inclusion for children with cp. on the other hand, stakeholders need to know in detail and dare to choose the factors that must be promoted to implement resilience inclusion for children with cp disabilities. currently, stakeholders are required to engage in open communication and build trust among parties to view disabilities as resources with special abilities and high competitiveness. the roadmap is a crucial element in the implementation of resilience inclusion for children with cp, so that they can have an appropriate plan based on the time frame (short term, medium term, and long term). the implementation process requires specific and attractive policies to support the development of inclusion in improving its implementation. specific and attractive policies are needed to support the development of inclusion in improving the resilience of children with cp. the inclusion of resilience in children with cp is inseparable from data updates that can be integrated to ensure proper and targeted implementation. strengthening inclusive services in various sectors must be implemented comprehensively and prioritised to achieve equity in the quality and quantity of inclusive medical personnel and educators. finally, a broad social movement related to education and the equitable distribution of understanding is a crucial aspect that must be considered to reduce stigma and discrimination, as well as to encourage all parties to design and build inclusive areas that are friendly to disabilities. acknowledgements competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.d.p. and b.m.b.a. collected and analysed data. b.m.b.a. analysed the interview data. a.d.p. took primary responsibility for writing the article, while r.p., j.s. and d.p. provided comments on the text. a.d.p., r.p., j.s., d.p. and b.m.b.a. held joint discussions about the results and throughout the progress of the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are not openly available because of reasons of sensitivity 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dhaka, bangladesh school of health, medical and applied sciences, central queensland university, rockhampton, queensland, australia sk. md. kamrul bashar child sight foundation, dhaka, bangladesh asian institute of disability and development (aidd), university of south asia, dhaka, bangladesh francis laryea korlebu teaching hospital, accra, ghana samuel kofi amponsah department of health information, christian health association of ghana, accra, ghana frederick inkum danquah st. john of god college of health, duayaw nkwanta, ghana mohammad muhit child sight foundation, dhaka, bangladesh asian institute of disability and development (aidd), university of south asia, dhaka, bangladesh hayley smithers-sheedy cerebral palsy alliance research institute, specialty of child and adolescent health, sydney medical school, faculty of medicine and health, the university of sydney, camperdown, new south wales, australia sarah mcintyre cerebral palsy alliance research institute, specialty of child and adolescent health, sydney medical school, faculty of medicine and health, the university of sydney, camperdown, new south wales, australia nadia badawi cerebral palsy alliance research institute, specialty of child and adolescent health, sydney medical school, faculty of medicine and health, the university of sydney, camperdown, new south wales, australia grace centre for newborn intensive care, sydney children’s hospital network, westmead, new south wales, australia gulam khandaker school of health, medical and applied sciences, central queensland university, rockhampton, queensland, australia discipline of child and adolescent health, sydney medical school, the university of sydney, camperdown, new south wales, australia central queensland public health unit, central queensland hospital and health service, queensland, australia citation jahan, i., bashar, sk.md.k., laryea, f., amponsah, s.k., danquah, f.i., muhit, m. et al., 2024, ‘epidemiology of cerebral palsy among children in ghana’, african journal of disability 13(0), a1336. https://doi.org/10.4102/ajod.v13i0.1336 original research epidemiology of cerebral palsy among children in ghana israt jahan, sk. md. kamrul bashar, francis laryea, samuel kofi amponsah, frederick inkum danquah, mohammad muhit, hayley smithers-sheedy, sarah mcintyre, nadia badawi, gulam khandaker received: 17 sept. 2023; accepted: 17 june 2024; published: 20 sept. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the epidemiology of cerebral palsy (cp) is poorly described in ghana. these data are crucial for evidence-based intervention for children with cp in the country. objectives: we aimed to describe the epidemiology of cp among children in ghana. method: we established the first institution-based register of children with cp in ghana (ghana cp register–gcpr). children with confirmed cp aged < 18 years were registered following a detailed neurodevelopmental assessment. socio-demographics, risk factors, predominant motor type and topography, gross motor function classification system (gmfcs), associated impairments, education and rehabilitation status were documented. results: between october 2018 and february 2020, 455 children were registered (mean [standard deviation {s.d.}] age at assessment: 5.9 [4.1] years). preterm birth and low birthweight were reported in 52.0% and 21.1% children respectively. most children (79.6%) had a preor perinatally acquired cp and the mean (s.d.) age of cp diagnosis was 22.2 (21.6) months. overall, 55.9% of children had spastic trior quadriplegia, 60.5% had gmfcs level iii–v and 70.3% had ≥ 1 associated impairment. however, 20.5% had never received rehabilitation services and 69.6% of school-aged children in the gcpr were not enrolled in schools. conclusion: the study findings indicate a high burden of severe motor and associated impairment among children with cp in ghana which highlights the need for tailored interventions to improve health and well-being of children with cp in the country. contribution: the study highlights the need for interventions to improve functional outcome, health and well-being of children with cp in ghana. keywords: disability; cerebral palsy; register; epidemiology; children; low-and middle-income countries. introduction cerebral palsy (cp) is a group of non-progressive but permanent neurological disorders that affects the movement and posture of an individual (rosenbaum et al. 2007). the primary causes of cp remain unknown in many cases, and the commonly known risk factors of cp include preterm birth, low birthweight, prolonged labour, meconium aspiration, abnormal foetal position, birth asphyxia, neonatal seizure, respiratory distress syndrome, hypoglycaemia and infection or sepsis among children in high-income countries (hics) (mcintyre et al. 2013). limited data from lowand middle-income countries (lmics) suggest that the estimated prevalence of cp is two to three times higher in lmics than hics (mcintyre et al. 2022). for instance, the prevalence of cp was reported to be 3.4 per 1000 live births in bangladesh (khandaker et al. 2019) compared to 1.4 per 1000 live births in australia (australian cerebral palsy register group [acpr] 2019). in addition to higher prevalence, lmics experience greater risk factors for cp. for instance, the proportion of preterm birth and low birthweight was found to be 16.4% and 37.6% among children with cp in bangladesh compared to 47.6% and 37.5% respectively among children with preand perinatally acquired cp in australia (acpr 2018; khandaker et al. 2019). furthermore, a regional difference is observed in terms of the burden of different risk factors of cp in lmics (jahan et al. 2021b; kakooza et al. 2017; khandaker et al. 2019). similar differences are also observed in terms of gross motor function limitations of children with cp in different countries. latest data suggest that 68.2%, 39.0% and 34.7% children with cp in bangladesh, uganda and australia had gross motor function classification system (gmfcs) level iii–v (acpr 2019; kakooza et al. 2017; khandaker et al. 2019). furthermore, a high burden of associated impairments (such as hearing, speech, vision, intellectual functioning and epilepsy) was also observed among children with cp in both lmics and hics (delacy, reid & acpr 2016; narayan et al. 2023). unfortunately, in lmics, most of these children with severe motor function limitations lack need-based rehabilitation services (al imam et al. 2021b). the vast difference in the epidemiology of cp (e.g. risk factors, motor function, clinical characteristics) between hics and lmics and even within lmics makes it difficult to utilise the interventions commonly developed and practised in high-resource settings (paneth 2021). understanding the epidemiology of cp in different regions could guide the development of need-based early intervention and rehabilitation support using the limited resources available in lmics. although a few available studies have reported a high burden of cp in the african region (abas, abdelaziem & kilany 2017; donald et al. 2014; duke et al. 2020; frank-briggs & alikor 2011; kakooza-mwesige et al. 2017), there is a dearth of knowledge on the risk factors as well as clinical, motor and rehabilitation features of children with cp in ghana. ghana is an lmic in western africa with 13.3% and 23.4% of the population living below the international and national poverty line, respectively (world bank 2019). the health services in ghana are delivered via a mix of public (i.e. ministry of health – ghana health services [ghs], teaching hospitals, quasi-government institutions and statutory bodies), private sectors (e.g. private-for-profit, mission-based providers, civil society organisations, other private providers) and traditional healers (traditional medicine providers, alternative medicine and faith healers) (university of ghana [uog] 2018). moreover, preventive and curative health services at the sub-district, district and regional levels are delivered by a wide network of outreach services, health centres and hospitals (uog 2018). additionally, community-based health planning and services, traditional birth attendants (tbas) and traditional healers play a crucial role in providing services at the community and household levels (uog 2018). despite a government-funded health insurance scheme (i.e. national health insurance scheme [nhis]) to finance the health care needs of the population in ghana, latest reports suggest only 36% of the population was supported by this scheme in 2018 (uog 2018). nonetheless, recent studies illustrate how concerted efforts over the previous decade have resulted in a significant improvement in the practice of institutional delivery, skilled birth attendance and antenatal care for children in ghana (uog 2018; ghana statistical service [gss], ghs and icf international [icf] 2015, 2018). yet, national level surveys in the last few years have identified a high proportion of low birthweight, preterm birth and birth asphyxia (i.e. known risk factors) among infants in ghana (gss et al. 2015, 2018). in the absence of systematic data collection, it is difficult to predict or monitor the neurodevelopmental outcomes of these children at high-risk of developing cp. a lack of oversight could also delay diagnosis and scope for early intervention which is crucial to improve the functional outcome, health and well-being of children with cp in ghana (jahan et al. 2019; karim et al. 2019a; king et al. 2022; power et al. 2019). cerebral palsy registers can play a significant role in minimising the evidence gap and generating robust data (e.g. prevalence, trend, and aetiology of cp) with positive impact on early diagnosis, early intervention and functional outcome of children with cp. in the last decade, several cp registers have been established in lmics with the common goal of improving the knowledge base and increasing provision of evidence-based services for children with cp in low-resource settings. in 2018, with support from the global lmic cp register (glm cpr a multi-country network of > 12 cp registers in lmics) (jahan et al. 2021), a group of professionals in ghana initiated an institution-based register of children with cp, known as ghana cp register (gcpr). this study aimed to describe the epidemiology of cp among children in ghana using data from the gcpr. methods the gcpr is an ongoing register of children with cp that collects information on selected variables to generate evidence on the epidemiology of cp in ghana. in this study, we used preliminary data collected as part of the gcpr. study settings and participants study participants are children with cp aged < 18 years registered into the gcpr between 2018 and 2020. the gcpr followed an institution-based surveillance method. the register activities were initially started at one facility that is the salvation army rehabilitation centre, begoro, and were gradually expanded to the other three facilities selected purposively. these were st. john of god hospital, duayaw nkwanta; holy family hospital, techiman, bono east, and komfo anokye teaching hospital, kumasi, ghana. all these facilities provide services to children with disabilities from all around the country. case definition and ascertainment the case definition was adopted from the surveillance of cp in europe (scpe) and acpr (acpr 2019; cans 2000; khandaker et al. 2015, 2019). according to the definition, ‘cerebral palsy – (i) is an umbrella term for a group of disorders, (ii) is a condition that is permanent but not unchanging, (iii) involves a disorder of movement, posture and motor function, (iv) is beecause of a non-progressive interference, lesion, or abnormality, and (v) the interference, lesion, or abnormality originates in the immature brain’ (khandaker et al. 2015). an opportunist recruitment strategy was used to recruit children into the gcpr. all children with a confirmed diagnosis of cp attending the inpatient or outpatient services at the participating healthcare facilities during the study period were eligible to participate. data collection and quality assurance an assessment team (including a physiotherapist, an occupational therapist, a public health research officer) from the participating centres conducted a detailed neurodevelopmental assessment of each participating child. a standard case record form (crf) was adapted from the glm cpr (acpr 2019; jahan et al. 2021; khandaker et al. 2019). information was collected on socio-demographic characteristics of both children with cp and their families. the known risk factors of cp, predominant motor type, topography and gross motor function, educational and rehabilitation status of the registered children with cp were also documented. the assessors received a 1-day training on the methodology and data collection for the register by an expert trainer. detailed information about the data-collection technique is given further in the text. sociodemographic characteristics a trained public health research officer documented socio-demographic characteristics by interviewing the primary caregivers of registered children. information about parental education and occupation at the time of birth of the child, total household income, total number of household members, housing characteristics and household water and sanitation facilities was collected. the crf had specific questions adapted from the ghana demographic and health survey (gdhs) questionnaire to document parental education, household drinking water sources and sanitation facilities (gss et al. 2015). drinking water sources such as piped water supply in a dwelling or yard or plot, public tap or standpipe, tube well or borehole, protected dug well, protected spring, rainwater, bottled or sachet water, were categorised as improved sources (gss et al. 2015), whereas drinking water sources such as unprotected dug wells, unprotected springs and tanker trucks or carts with small tanks, and surface water were categorised as unimproved sources of drinking water (gss et al. 2015). a toilet facility with flush or pour flush to a piped sewer system or septic tank or pit latrine, ventilated improved pit latrine and pit latrine with slab were documented as improved sanitation facilities (gss et al. 2015). known risk factors information related to the aetiology or risk factors of cp was documented by interviewing the primary caregivers and reviewing available medical records. a standard crf adapted from the glm cpr was used to collect information on (1) maternal characteristics (age at birth of the child, consanguinity, place of birth, mode of delivery), (2) clinical characteristics (e.g. gestational age, birth weight, plurality), (3) other preor perinatal factors, for example, signs of birth asphyxia, early feeding difficulties, any complication during the child birth and (4) timing of the brain injury among participating children. gestational age was categorised into four groups as follows: (1) term > 37 weeks, (2) moderate to late preterm (32–37 weeks), (3) very preterm (28–31 weeks), (4) extreme preterm (< 28 weeks). birth weight was categorised into two groups: (1) normal birth weight (≥ 2500 g), and (2) low birth weight (< 2500 g). the timing of brain injury was documented as (1) pre or perinatal, or (2) post-neonatal (if the brain injury occurred after 28 days of birth or before 5 years of age). a public health research officer trained in conducting the interviews and reviewing medical records collected this information. motor characteristics and presence of associated impairments the predominant motor type and spastic topography of cp were documented following the classification used by acpr and bangladesh cp register (bcpr) (acpr 2019; khandaker et al. 2015, 2019). the gmfcs level was assessed following standard guidelines (rosenbaum et al. 2008). the presence of associated impairments (e.g. hearing, speech, visual, intellectual impairment and epilepsy) was assessed and recorded based on clinical examination, review of available medical records and a detailed history provided by the primary caregivers. furthermore, the severity of any associated impairment present was documented following the classification and guidelines used in bcpr and acpr (acpr 2019; khandaker et al. 2019). a detailed methodology of the assessments is available in supplementary table 1. table 1: socio-demographic characteristics of children registered into the ghana cp register (n = 455). the information was collected by direct assessment of participating children by a physiotherapist and an occupational therapist trained on the standard protocol mentioned earlier in the text. education if a child was aged ≥ 6 years at the time of assessment, their educational status was documented. the caregivers were asked whether the child (aged ≥ 6 years) was enrolled in any mainstream or special education programme. if the response was yes, then the type of school was documented; however, if the response was no, then the reason for not enrolling the child to any education system was recorded. a trained occupational therapist interviewed the primary caregivers and collected this information. rehabilitation status access to rehabilitation services was documented for all children included in the gcpr. information related to the age of receiving rehabilitation for the first time, the type and place of services received were documented for children who ever received any rehabilitation services. the causes of not accessing or utilising any rehabilitation services were documented for children who never received any rehabilitation. a physiotherapist collected information related to rehabilitation status by interviewing the primary caregivers of participating children. statistical analysis descriptive statistics were used to report the socio-demographic characteristics, known risk factors of cp, motor characteristics, rehabilitation and education status of children with cp registered into the gcpr. missing data for any variable were indicated using footnotes, and valid percentages were reported throughout the results section. all analyses were completed using spss version 26 (ibm corporation, chicago, il). ethical considerations ethics approval was obtained from the ethics board of the christian health association of ghana (ref: chagirb07022021); and the national catholic health service, st. john of god hospital (ref: sjogh/afsr/19). the study objectives, data collection methods, confidentiality, voluntary participation and right to withdraw from the study were explained, and informed written consent was given by each of the primary caregivers of participating children prior to data collection. results between october 2018 and february 2020, 455 children with cp were registered from the four health care facilities. the mean (standard deviation [s.d.]) age at assessment was 5.9 (4.1) years, and 42.1% (n = 191 out of 454) were female. sociodemographic characteristics table 1 shows the socio-demographic characteristics of participating children. half of the children were aged < 5 years. overall, 31% (n = 138 out of 440) of the mothers and 20% (n = 85 out of 433) of the fathers of registered children did not receive any formal schooling. furthermore, 18.0% (n = 79 out of 440) of the mothers and 28% (n = 124 out of 433) of the fathers had completed more than secondary education. in terms of occupation, 40.0% (n = 182 out of 454) of the mothers were involved in sales and service, and 31.0% (n = 140 out of 446) of the fathers were involved in skilled manual work. only 12.0% (n = 53 out of 454) of the mothers and 2.0% (n = 8 out of 446) of the fathers were unemployed or not involved in any work at the time of child’s birth. most of the households had access to an improved source of drinking water, and improved sanitation facilities. the median monthly family income was 350 [150, 725] ghanaian cedi (~ 29 [13–60] usd). aetiology and commonly known risk factors table 2 summarises the aetiology of cp among children registered into the gcpr. most children had an institutional birth. two-thirds (65.0%, n = 293 out of 450) of the primary caregivers reported having complications during the birth of their child with cp, and of them, 62.0% (n = 182 out of 293) reported having obstructed or prolonged labour. of the known birthweights, 21.0% (n = 45 out of 213) children had low birthweight (lbw). among all children, nearly half (41%, n = 184 out of 452) had reported signs suggestive of birth asphyxia. table 2: commonly known risk factors of cerebral palsy of children registered into the ghana cp register (n = 455). age of diagnosis, timing of brain injury and probable cause of cerebral palsy the mean (s.d.) age of confirmed diagnosis of cp was 22.2 (21.6) months among the registered children. more than two-thirds (70.0%, n = 320 out of 455) had received their diagnosis at or before 24 months of age, and only 5.0% (n = 24 out of 455) children received a confirmed diagnosis after 5 years of age. overall, 80% (n = 362 out of 455) of children had preor perinatally acquired cp, and the remaining 20.0% (n = 93 out of 455) had post-neonatally acquired cp. the causes of post-neonatally acquired cp included accidental head injury (58.0%, n = 49 out of 85), post-seizure (29.0%, n = 25 out of 85), unspecified infections (6.0%, n = 5 out of 85), stroke/cerebrovascular accident (cva) (4.0%, n = 3 out of 85), post immunisation (2.0%, n = 2 out of 85) and viral infection (1.0%, n = 1 out of 85). the causes remained unknown for n = 8 children. motor characteristics and the presence of associated impairments two-thirds of the children had spastic cp; of them, 56.0% (n = 177 out of 317) had trior quadriplegia. a further 11.0% (n = 52 out of 455) had ataxia. calculating the aggregate total of gmfcs levels yields 61.0% (n = 273 out of 450) of children in this classification system. among all children, 70.0% (n = 320 out of 455) had at least one associated impairment (visual: 6.0%, n = 29 out of 455; hearing: 22.0%, n = 100 out of 453; speech: 72.0%, n = 328 out of 453; intellectual: 41.0%, n = 100 out of 247 and epilepsy: 12.0%, n = 49 out of 454) (table 3). table 3: motor characteristics and associated impairments of children registered into the ghana cp register. rehabilitation and educational status overall, 21.0% (n = 93 out of 454) of the registered children had never received any rehabilitation services. the mean (s.d.) age of starting rehabilitation was 25.0 (21.0) months. the major causes of never receiving any rehabilitation included parental unawareness about the need for and availability of services (62.0%, n = 56 out of 90) and financial constraints (32.0%, n = 29 out of 90) (table 4). table 4: rehabilitation and educational status of children registered into the ghana cp register. overall, 70.0% (n = 128 out of 184) of school-aged children were not enrolled either in mainstream or special education schools. the leading causes for non-enrolment in any educational institution were parents’ refusal to enrol and the lack of disability-inclusive schools in the neighbourhood (table 4). discussion to the best of our knowledge, ours is the first study reporting the epidemiology of cp among children from an institution-based register in ghana. most of the children in our cohort were aged below 10 years and had educated parents with varied occupations or income generating activities. preterm birth, birth complications and birth asphyxia were frequently reported in our cohort. most children had severe gross motor function limitations and had multiple associated impairments. in the absence of early intervention and rehabilitation services, these children are at high risk of adverse health and functional outcomes affecting their quality of life and survival in the long run (jahan et al. 2019; karim et al. 2019a; power et al. 2019). most children registered in the gcpr had cp acquired preand perinatally with a high burden of commonly known risk factors recognised globally (abubakari, taabia & ali 2019; adu-bonsaffoh et al. 2019; jahan et al. 2020; khandaker et al. 2019; mcintyre et al. 2013; monokwane et al. 2017). timely intervention is crucial to manage these risk factors and prevent adverse outcomes in lmics. a recent study reported 80% of the health facilities in ghana lacked sufficient capacity for basic or comprehensive emergency obstetric care for mothers (kyei-onanjiri et al. 2018). it is therefore important to emphasise the critical need for capacity development within the health system, as well as the need to implement preventive strategies and programmes for clinical management of children with cp in ghana. nevertheless, the proportion of cp acquired post-neonatally was also high when compared with data collected from other institution-based settings (karim et al. 2022). furthermore, the high percentage of post-neonatally acquired cp following a head injury and post-seizures is concerning. the post-seizure complications could be related to viral or bacterial central nervous system (cns) infections, that is meningitis and encephalitis (germany et al. 2013), cerebral malaria or could be because of bilirubin encephalopathy (jahan et al. 2019). unfortunately, these data were not available but warrant further investigation. data from meningitis surveillance between 2009 and 2013 in the upper west region of ghana showed that 19.0% of the documented meningitis cases were among children aged < 5 years (total 46.0% aged < 14 years), and the bacterial pathogen was isolated in one-third of the cases (the rts,s epidemiology epi-mal-002 study group 2021). there is opportunity to mitigate risk by raising awareness of vaccine-preventable infectious disease, and health promotion (renner et al. 2019). most children in the gcpr had spastic trior quadriplegia, gmfcs level iii-v and associated impairments. this overrepresentation of severe forms of cp could be because of recruitment bias associated with the surveillance mechanism (i.e. institution-based). community-based surveillance is required for better understanding of the clinical profile of cp among children in ghana. we observed that 20% of registered children had never received any rehabilitation services. this higher percentage of rehabilitation uptake among registered children could be because we recruited study participants from healthcare facilities that also provide rehabilitation services to children. nevertheless, the reasons for non-receipt of rehabilitation services in the cohort need further exploration as the scenario may not be similar in rural and remote communities. as mentioned earlier, only a third of the population in ghana is supported by the government-funded health insurance scheme (uog 2018). therefore, children from low and middle-income families who are not covered by any insurance are less likely to be able to afford out-of-pocket expenses, thus limiting their opportunity for service utilisation in an lmic like ghana (al imam et al. 2021, 2022; jahan et al. 2021). this is a concern as studies in other lmics have found a strong relationship between such severe forms of cp and subluxation of hips, low social participation and quality of life if not timely intervened (karim et al. 2019b; power et al. 2019). early intervention and rehabilitation service providers should consider working towards reducing the inequity in service provision for children with disability (e.g. cp) in lmics like ghana. most school-aged children in gcpr were not enrolled in a mainstream or special education system, with parental refusal being the prime reason. this is possibly because of the stigma and social exclusion imposed by family, community, society and culture in lmics like ghana (nketsia et al. 2019; patel et al. 2017; zuurmond et al. 2022). additionally, a lack of disability-inclusive schools as well as physical barriers to mainstream schools can reduce opportunities to access education for vulnerable children. a similar situation was reported in a recent qualitative study in ghana, where the mothers of children with cp shared their experience of their children being excluded from mainstream or special education system because of a lack of facilities (nketsia et al. 2019). interventions and programmes to promote inclusive education and training of educators and schoolteachers could be a start to overcome the barriers. more in-depth information is required to understand parents’ perspective for refusal to enrol their children for formal schooling and promote an evidence-based approach to improving the situation (smythe, adelson & polack 2020; zuurmond et al. 2019). despite considerable efforts, our study had several limitations. firstly, we used an institution-based surveillance mechanism, and the participants were recruited from four tertiary hospitals which also are the highest referral centres for the region. as the data in this study only represent children accessing these services, the findings may not be generalisable to the population level. nevertheless, data reported in this study are the first of its kind and have provided an understanding of the epidemiology of cp among children in ghana. these data could also be used as an infrastructure to scale up the cp register activities at the population level. secondly, the aforementioned recruitment bias may indicate that the rehabilitation status of the registered children may vary from the true scenario. population-based surveillance could overcome this limitation. thirdly, a large proportion of the children in gcpr were of young age (< 5 years); they need to be followed-up and reassessed after their fifth birthday to document their cp descriptions. however, as most children in the cohort had spastic, dyskinetic or ataxic cp, their diagnosis is likely to remain same at follow-up assessments, although their motor function level may vary. fourthly, this study solely focused on describing the epidemiology of cp among children in ghana, without assessing associations between various variables. although the findings align with the study’s objective, further analysis exploring the relationships between socio-demographic factors, aetiology, clinical and motor types, and rehabilitation status would be valuable for developing targeted interventions for children with cp in ghana. fifthly, the data for this study were collected between october 2018 and february 2020. while the data are somewhat dated, the findings remain significant as this is, to our knowledge, the first detailed epidemiological study of cp among children in the country. finally, there were a large number of missing data for the following variables: monthly family income (n = 118 respondents did not want to report their income), birthweight (was unknown for n = 242 children), presence of intellectual impairment (diagnosis could not be confirmed for n = 186 children) and reasons for non-school-attendance (n = 22 did not mention any causes). as mentioned in the statistical analysis section, we therefore only used descriptive statistics and reported valid percentages throughout the results section. in the past decade, the understanding of epidemiology of cp in different lmics has improved. the growing evidence has also highlighted regional differences and the need for country-specific data to better understand the epidemiology of cp in low-resource settings. our study has added important data to advance the global knowledge base of cp in lmics. data from the gcpr could act as a baseline, provide an institutional framework for future translational research and contribute to the development of strategies and intervention for prevention, clinical management, rehabilitation and education of children with cp in ghana. acknowledgements the authors thank all children with cp and their caregivers who participated in this study for their valuable time and information. the authors also appreciate miss paulina nyakotey, occupational therapist at the salvation army rehabilitation centre, begoro, ghana for her assistance in assessment and data collection. the authors thank the physiotherapy technician team in ghana including mr ransford boadi from holy family hospital, techiman; mr sylvester kombien yekinam from anglogold ashanti hospital, obuasi; mrs alice gyekyebea asamoah and mrs josephine asamoah from komfo anokye teaching hospital, kumasi and prosthetist and orthotist officer, mr michael agyei-twum, from st. john of god hospital, duayaw nkwanta, ghana for their extensive support in the assessment, registration of children with cp in the gcpr and the data collection process. the authors commend mr. iskander hossain, the data management officer of csf global, for assisting with data entry and management. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors meet the criteria for authorship as outlined in the authorship policy and author contribution statement policies. the contributions made by each author are summarised below. i.j. and k.b. collaborated on the study and article as senior contributors. conceptualisation: m.m., n.b., g.k.; methodology: i.j., m.m., n.b., g.k.; formal analysis: i.j., k.b., g.k.; investigation: f.l., s.k.a., f.i.d.; writing – original draft: k.b., visualisation: i.j., k.b., g.k.; project administration: i.j., f.l., s.k.a., g.k.; software: i.j., k.b.; validation: g.k.; data curation: i.j., f.l., s.k.a., g.k., resources: i.j., f.l., s.k.a., f.i.d., m.m., g.k.; writing, review and editing: authors already mentioned and s.m., h.s.-s.; supervision: f.l., s.k.a., f.i.d., g.k.; funding acquisition: m.m., n.b., g.k. funding information this study was funded by the cerebral palsy alliance research foundation project, grant pg10017. data availability the data presented in this study are available on request from the corresponding author, g.k. the data are not publicly available because of privacy and ethical restrictions. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s results, findings, and content. references abas, o., abdelaziem, f. & kilany, a., 2017, ‘clinical spectrum of cerebral palsy and associated disability in south egypt: a 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j., shakespeare, t. et al., 2019, ‘a support programme for caregivers of children with disabilities in ghana: understanding the impact on the wellbeing of caregivers’, child: care, health and development 45(1), 45–53. https://doi.org/10.1111/cch.12618 zuurmond, m., seeley, j., nyant, g.g., baltussen, m., abanga, j., polack, s. et al., 2022, ‘exploring caregiver experiences of stigma in ghana: they insult me because of my child’, disability & society 37(5), 827–48. https://doi.org/10.1080/09687599.2020.1851172 abstract introduction methods results discussion limitations conclusions acknowledgements references about the author(s) thato m.m. paulus-mokgachane spinal cord injury rehabilitation unit, princess marina hospital, university of botswana, gaborone, botswana surona j. visagie centre for rehabilitation studies, stellenbosch university, cape town, south africa gubela mji centre for rehabilitation studies, stellenbosch university, cape town, south africa citation paulus-mokgachane, t.m.m., visagie, s.j. & mji, g., 2019, ‘access to primary care for persons with spinal cord injuries in the greater gaborone area, botswana’, african journal of disability 8(0), a539. https://doi.org/10.4102/ajod.v8i0.539 original research access to primary care for persons with spinal cord injuries in the greater gaborone area, botswana thato m.m. paulus-mokgachane, surona j. visagie, gubela mji received: 04 june 2018; accepted: 05 june 2019; published: 23 sept. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with spinal cord injury (sci) often have great need for healthcare services, but they report access challenges. primary care access to people with sci has not been explored in botswana. objective: this study aimed to identify barriers and facilitators that users with spinal cord injuries experience in accessing primary care services in the greater gaborone area, botswana. methods: a quantitative, cross-sectional, observational study was conducted. data were collected with a structured questionnaire from 57 participants with traumatic and non-traumatic sci. descriptive and inferential analysis was performed. results: the male to female ratio was 2.8:1. the mean age of participants was 40 years (standard deviation 9.59). road traffic crashes caused 85% of the injuries. most participants visited primary care facilities between 2 and 10 times in the 6 months before the study. participants were satisfied with the services (63%) and felt that facilities were clean (95%) and well maintained (73.5%). preferential treatment, respect, short waiting times and convenient hours facilitated satisfaction with services. availability was hampered by insufficient provider knowledge on sci as indicated by 71.9% of participants, and shortage of consumables (80.7%). structural challenges (42.1% could not enter the facility by themselves and 56.5% could not use the bathroom) and lack of height-adjustable examining couches (66.7%) impeded accessibility. cost was incurred when participants (64.9%) utilised private health services where public services failed to address their needs. conclusion: primary care services were mostly affordable and adequate. availability, acceptability and accessibility aspects created barriers. keywords: spinal cord injury; primary care; botswana; access; available; affordable; accessible; acceptable; adequate. introduction persons with disabilities can experience excellent health, but because of the nature of the impairment, co-morbidities and secondary complications, they often require more access to healthcare than persons without disabilities (shakespeare 2014). according to a systematic review by bright and kuper (2018), studies have shown that persons with disabilities experience greater barriers in accessing healthcare than persons without disabilities. the barriers include geographic and transport difficulties, financial challenges, staff attitudes, inaccessible buildings, a lack of equipment, communication barriers and lack of skills and knowledge amongst service providers (baart & taaka 2017; bright & kuper 2018). persons with disabilities are also more likely to be dissatisfied with healthcare services than their non-disabled peers (gulley & altman 2008; parish & huh 2006). spinal cord injury (sci) is often associated with poorer health outcomes because of secondary complications and challenges in accessing healthcare (amatachaya et al. 2011; chamberlain et al. 2015; hitzig et al. 2008; löfvenmark et al. 2017b; øderud 2014). common secondary complications after sci include urinary tract infections, bowel problems, respiratory infections, autonomic dysreflexia, pressure ulcers, musculoskeletal and/or neuropathic pain, fractures and depression (amatachaya et al. 2011; hitzig et al. 2008; löfvenmark et al. 2017b; øderud 2014). persons with sci also remain at risk for health conditions seen in general populations such as cardiovascular diseases (chamberlain et al. 2015; hitzig et al. 2008). thus, persons with sci might need to utilise healthcare services more than persons without sci. healthcare access for persons with sci, as for their peers, starts with access to primary care. the role of primary care is to ‘bring promotion and prevention, cure and care together in a safe, effective and socially productive way at the interface between the population and the health system’ (who 2008:41). primary care service delivery in africa is hampered by inequity, ineffectiveness, poor coverage and access, lack of financial and human resources, poor governance and lack of monitoring and evaluation (onokerhoraye 2016). according to the access framework (obrist et al. 2007), healthcare access and use is dependent on five dimensions (figure 1). figure 1: healthcare access framework. availability of care: availability refers to an adequate supply of facilities, services, providers, consumables and drugs. it also infers that providers have adequate knowledge and skills (obrist et al. 2007). studies from north america report that primary care facilities and services were available to persons with sci (goodridge et al. 2015; stillman et al. 2014, 2017). however, the number of providers was not always sufficient, with resultant long waiting times (goodridge et al. 2015). service providers’ knowledge and skills were also deemed insufficient to deal with the specific needs of someone with sci and to understand the impact of sci on overall health (goodridge et al. 2015; stillman et al. 2014, 2017). african studies focusing on primary care access for persons with sci specifically could not be identified. studies that focused on persons with diverse disabilities showed challenges with service availability that included a lack of services and facilities (eide et al. 2015; mulumba et al. 2014), insufficient drugs (eide et al. 2015; mulumba et al. 2014; van rooy et al. 2012; vergunst et al. 2015), insufficient equipment (eide et al. 2015; vergunst et al. 2015), lack of staff (mlenzana & mwansa 2012; mulumba et al. 2014; vergunst et al. 2015), lack of skills (mlenzana et al. 2013; mulumba et al. 2014; van rooy et al. 2012) and long waiting times (cawood & visagie 2015; van rooy et al. 2011; vergunst et al. 2015). accessibility of care: an accessible service is within easy reach of clients in terms of distance, transport and travel time. it is also not hampered by architectural barriers at the facility and poor access to equipment, diagnostic and treatment services (goodridge et al. 2015). the majority (73.8%) of american wheelchair users (n = 432) in a study by stillman et al. (2017) experienced physical access challenges at primary care facilities; as did the majority (99.1%) of a group with sci (n = 108) (stillman et al. 2014). doors, hallways, bathrooms and examination rooms created barriers (stillman et al. 2014, 2017). a lack of height-adjustable beds, combined with a lack of transfer equipment, led to many participants (69.7% – stillman et al. 2017; 85.2% – stillman et al. 2014) being examined in their wheelchairs. in africa, people frequently walk, often over considerable distances and inhospitable terrain to access healthcare. therefore, mobility impairments together with a lack of mobility assistive devices and poor access to public transport because of unavailability, inaccessibility and high cost can create barriers to healthcare access for persons with disabilities (cawood & visagie 2015; löfvenmark et al. 2017b; maart & jelsma 2013; mulumba et al. 2014; munthali et al. 2019; van rooy et al. 2012; vergunst et al. 2015). at facilities, further physical barriers are encountered (vergunst et al. 2015), which include inaccessible bathrooms and inaccessible entrances (van rooy et al. 2011). affordability of care: affordability is impacted by direct and indirect costs including loss of income, transport costs, time loss and cost of drugs, consumables and consultations (obrist et al. 2007). van rooy et al. (2012), munthali et al. (2019) and maart and jelsma (2013) identified costs of accessing healthcare to be a significant factor that limits healthcare access of persons with disabilities in namibia, malawi and south africa. adequacy of care: adequacy refers to the organisation of care in terms of the facilities’ hours as well as to cleanliness and maintenance of the facility and equipment. van rooy et al. (2011) identify challenges with appointment systems, facility maintenance and cleanliness. scheffler, visagie and schneider (2015) have shown how an appointment for a specific time, triage and extended service hours improved adequacy of services at an urban primary care facility in south africa. acceptability of care: an acceptable service is ethically sound, and appropriate to gender, life cycle and cultural needs of clients. confidentiality and privacy are ensured. participants in the qualitative study by goodridge et al. (2015) felt that in order to protect their health interests, they had to be vigilant and proactive and not unquestioningly accept the opinion of care providers. van rooy et al. (2012) describe nurses to be rude and demonstrate a failure of clients with disabilities to fully utilise the available healthcare services because of staff attitude. other african studies also found attitudinal barriers including a lack of compassion, patience, courtesy and respect (mlenzana & mwansa 2012; mulumba et al. 2014; munthali et al. 2019). furthermore, mlenzana and mwansa (2012), munthali et al. (2019) and mulumba et al. (2014) identified communication challenges in zambian, malawian and ugandan studies, respectively. it can thus be concluded that healthcare access to persons with sci in developed countries was hampered by challenges in all five access dimensions. similarly, access to primary care for persons with disabilities in africa was hampered in all five dimensions. löfvenmark and colleagues provide valuable information on the epidemiology of and outcomes after sci, as well as on the experience of living with sci in botswana (löfvenmark et al. 2015, 2016, 2017a, 2017b). however, there is a paucity of studies from africa and botswana that focus on primary care access for persons with sci. the challenges and enablers that persons with sci face when accessing primary care, a service that is a fundamental human right, remain unexplored. therefore, this study with the aim to identify barriers and facilitators that users with sci experience in accessing primary care services in the greater gaborone city area, botswana, evolved. study setting botswana has a population of 2 024 904 inhabitants of which 231 592 reside in the capital city of gaborone (statistics botswana 2014). according to 2011 population and housing census, there are 59 103 (2.92%) persons with disabilities in botswana (statistics botswana 2014). amongst these, 11.7% reported impairments of legs, arms (6.3%) and/or an inability to use the body (2.5%) (hlalele et al. 2015). gaborone has a disability prevalence of 1.5%, which is below the national prevalence (hlalele et al. 2015). spinal cord injury prevalence figures could not be found for either the capital city or the entire country. löfvenmark et al. (2015) found the incidence of traumatic sci to be 13 per million per year at the only sci rehabilitation unit, spinalis botswana (spinalis), in the country. there is a single public hospital, princess marina hospital (pmh), in the city of gaborone, which serves as a referral facility for the southern part of the country. greater gaborone also has two district hospitals, two private hospitals and a number of private clinics. princess marina hospital houses the only sci rehabilitation unit in the country. established in partnership between the government of botswana and a swedish nongovernmental organisation (ngo) ‘spinalis foundation’, the unit is called botswana spinalis sci rehabilitation unit. care and rehabilitation for persons with traumatic sci are provided in a 12-bed ward in this unit. persons with non-traumatic sci are treated in other departments of pmh and at district hospitals. following discharge from hospital, both persons with traumatic and non-traumatic sci are expected to source primary care and sci-related consumables from their local primary care facilities. in botswana, primary care is provided through health posts, clinics and district hospitals for a consultation fee of 5 pula ($0.50). these facilities are managed by district health management teams. there are 74 public clinics and health posts in the study area. methods a quantitative, cross-sectional, observational survey was performed. the study population consisted of persons with sci residing in the greater gaborone city area. persons older than 21 years, with a complete or incomplete, traumatic or non-traumatic sci, were included in the study. people with co-morbidities like mental impairments or brain trauma were excluded. neither the precise number of people nor names and contact details were on record for this population. since the establishment of spinalis in 2010, a database of clients with traumatic sci has been kept. at the time of the study, the database contained 197 names of people with traumatic sci from the entire country, of whom 60 resided in the study setting. a complete database for persons with non-traumatic sci could not be found. the databases of the orthopaedics department and the spine clinic at pmh were accessed to identify people with non-traumatic sci living in the study setting. six persons were identified. thus, a possible 66 participants were identified. the contact details of nine persons were incorrect. the rest (57; 51 with traumatic sci and 6 with non-traumatic sci) participated in the study. a self-developed questionnaire, based on the access framework (obrist et al. 2007), was used for data collection. the questionnaire was developed in english and translated into setswana, with subsequent back translation to english. data were collected through verbal administration at a venue of participants’ choice by the first author. after the data were checked for errors, it was entered onto an excel spreadsheet. data were mainly categorical (nominal or ordinal) in nature. descriptive analysis was performed, and prevalence ratios calculated to determine if certain variables such as gender, type of facility visited or level of injury impacted satisfaction with services and availability of services (morroni & myer 2007). results the male to female ratio amongst study participants was 2.8:1 with 73.7% (42) being men and 26.3% (15) women. the mean age of participants at the time of data collection was 40 (standard deviation [s.d.] 9.59), ranging from 22 to 64. on average, the years since the injury were 4 (s.d. 12), ranging from 2 to 5 years. the most common cause of sci amongst the participants was road traffic crashes (rtcs) (48; 85%). other causes such as violence (3; 5%), tuberculosis (3; 5%) and compressive myelopathy (3; 5%) were rare. almost the same number of participants had paraplegia (28; 49.1%) and tetraplegia (29; 50.9%). figure 2 shows that most participants (43; 75%) visited primary care facilities between 2 and 10 times in the 6 month period before the study. figure 2: frequency of primary care visits in the 6 months before the study (n = 57). the most common reason for visiting the health facilities was sci-related complications (22; 38.6%) followed by sci-related consumables (18; 31.6%) and minor ailments (17; 29.8%). a higher percentage of women (9/15; 60%) visited a facility for minor ailments than men (8/42; 19%). satisfaction with primary care thirty-six participants (63.2%) were always or mostly satisfied with the care they received, while 21(36.8%) were hardly or never satisfied. prevalence ratios showed little difference between satisfaction with services and gender (0.94), level of injury (1.6) and type of facility visited (1.47). availability of primary care the majority of participants (41; 71.9%) accessed a clinic for primary care, while 11 (19.3%) accessed a hospital and five (8.8%) accessed a health post. prevalence ratios showed that those who accessed a hospital felt that services were 7.5 times more available than those that access clinics or health posts. table 1 shows that the prescribed medication was always available for 45.6% (26) of participants and sometimes for a further 36.8% (21). this trend was observed for all three types of delivery points with somewhat lower availability at hospitals (40%) than clinics (45%) and the highest availability at health posts (55%). consumables were less often available. prevalence ratios show no difference between availability of medicine (0.52) and sci consumables (1.3) between the different facilities. table 1: availability of medication and consumables (n = 57). while 71.9% (41) of participants thought that the number of staff was excellent or good, they perceived challenges with regard to staff’s knowledge on sci-related problems, with 71.9% (41) scoring this aspect as poor or very poor and none scoring it as excellent (table 2). staff at hospitals was 2.1 times more likely to have sufficient knowledge on sci and hospitals were 4.2 more likely to have adequate staff numbers than the other facilities. table 2: availability and knowledge of staff (n = 57). accessibility of primary care while 84.2% (48) of participants stayed less than 5 km from their primary care facility, 52.6% (30) could not get to the facility easily. figure 3 shows that most participants (37; 65%) used their wheelchairs with (12; 21%) or without assistance (25; 44%) to get to the healthcare facilities. figure 3: mode of travel to the healthcare facility (n = 57). twenty-four (42.1%) participants could not enter the facility by themselves. the reasons for this included the absence of a ramp (1), too steep a ramp (7), sandy or rough terrain outside (5), narrow door (4), inability to open the door (4), a door mat (1) and other not specified (2). eleven (19.3%) participants have never attempted to use the bathroom at the healthcare facility. of the 46 (80.7%) who did want to use the bathroom, the majority (26/46; 56.2%) were unable to access the toilet and use hand washing (22/46; 47.8%) and drying facilities (26/46; 56.2%). none of the participants had access to an emergency call button in the bathroom. affordability of primary care most participants (48; 84.2%) were not required to pay for healthcare. six of the participants paid more than 100 pula ($10), two paid between 10 and 100 pula ($1–$10), while one paid 5 pula (< $1) (the amount charged by the government for consultations at the time of the study). however, 64.9% (37) of the participants incurred costs through having to access private services such as a doctor, medication or consumables when these were not available through the public service. most (40; 70.2%) of the participants did not spend money to reach the primary care facilities. four (7%) participants, however, spent more than 300 pula ($30) to access the primary care facilities. the majority (41; 71.9%) of the participants held the view that accessing primary care services was not expensive. acceptability of primary care table 3 shows that 59.6% (34) of the participants used facilities that had an appointment system of which 11 (19.3%) were given appointments for a specific time. the majority of participants waited less than 30 min for consultations (26; 46%) and at the dispensary (48; 84%). table 3: service acceptability (n = 57). most facilities (38; 66.7%) did not have height-adjustable beds; consequently, 37 participants (64.9%) were assessed in their wheelchairs. forty-two (73.7%) participants had been referred to another facility and amongst those referred, 34 (59.6%) had no transport offered to them. most participants (42; 73.7%) stated that they received preferential treatment and that they were treated with dignity (51; 89.5%). with regard to staff attitude towards them, 35 (61.4%) of the participants reported that it was positive. adequacy of primary care services the majority of participants (51; 89.5%) were of the opinion that the facilities were open at hours convenient for them. they also indicated high levels of satisfaction with cleanliness, facility maintenance and the availability of functioning equipment, as shown in figure 4. figure 4: participants’ opinions on aspects related to the adequacy of primary care (n = 57). discussion demographic information the higher ratio of men to women is consistent with worldwide trends in sci (singh et al. 2014). the percentage of men is also similar to that found by löfvenmark et al. (2015) in a previous study conducted in botswana. the finding that participants were on average younger than 40 years old is also consistent with international and national data on sci (löfvenmark et al. 2015; singh et al. 2014). the low average time since the injury could indicate poor long-term survival of people with sci in botswana. however, further study is necessary to come to any definite conclusion on this. medical information the percentage of participants who were injured in rtcs is higher than the 68% found by löfvenmark et al. (2015) in botswana and the 41% described by rahimi-movaghar et al. (2013) in developing countries. this might be because of sampling bias in the current study or it might indicate an unduly high number of rtcs in botswana. other traumatic causes as well as medical causes were rare. however, one cannot conclude that traumatic sci occurred at higher frequency than non-traumatic sci in the study setting. a database for persons with traumatic sci was readily available, while there was none for persons with non-traumatic injuries. the finding that similar numbers of participants had paraplegia (28; 49.1%) and tetraplegia (29; 50.9%) is inconsistent with findings from löfvenmark et al. (2015), where tetraplegia was said to be more common than paraplegia. this difference could be because of a higher mortality rate of people with tetraplegia when compared to those with paraplegia as noted by löfvenmark et al. (2015) and øderud (2014). further studies are, however, required to investigate this hypothesis. primary care visits the results demonstrated a big need for healthcare services amongst people with sci which is consistent with literature findings (amatachaya et al. 2011; chamberlain et al. 2015; hitzig et al. 2009; øderud 2014). the finding that women visited the facilities more often than men is in accordance with findings on primary care use of general populations (mash et al. 2012). the majority of participants (40; 70.2%) accessed a clinic for primary care. this is consistent with the number of such facilities in the area. a bigger percentage of participants (20% or more) were not satisfied with the services that they received than what was found in international studies (stillman et al. 2014, 2017). this might be because of the challenge of providing primary care of continuous high quality in developing countries (onokerhoraye 2016). access to primary care primary care was available to all participants. most participants were happy with the number of staff at their healthcare facilities, an opinion that was confirmed by relatively short waiting times for both consultations and drugs. other studies from africa describe long waiting times (munthali et al. 2019; scheffler et al. 2015; van rooy et al. 2012; vergunst et al. 2015) and insufficient numbers of staff (scheffler et al. 2015; van rooy et al. 2012). the short waiting times are even more positive when one considers that not all facilities had an appointment system and even fewer gave appointments for a specific time. not using appointments to schedule services has also been identified in namibia and can lead to longer waiting times (van rooy et al. 2012). the rather positive findings on staff attitude, preferential treatment and dignity are in contrast with most previous findings from africa. munthali et al. (2019) showed that persons with disabilities in malawi experienced positive attitudes from service providers intermingled with discrimination, rudeness and prejudice. other studies described discrimination (bright & kuper 2018; munthali et al. 2019; scheffler et al. 2015) against persons with disabilities, persons with disabilities being ridiculed (mulumba et al. 2014) and abused (baart & taaka 2017; mulumba et al. 2014) as well as negative attitudes and rudeness (baart & taaka 2017; bright & kuper 2018; scheffler et al. 2015; van rooy et al. 2012). a consultation time of less than 10 min is bothersome as it might be difficult to do a thorough physical assessment in such a short time in the light of the mobility challenges persons with sci experience (iezzoni 2006), especially since few of the hospitals had height-adjustable examination beds. similarly to findings by stillman et al. (2017) and stillman et al. (2014), many participants were examined while sitting in their wheelchairs. examining persons with sci in their wheelchairs is unacceptable because important symptoms such as the initial stages of pressure ulcers, a serious and highly prevalent complication of sci in developing countries (zakrasek, creasey & crew 2015), might be missed. baart and taaka (2017) found in a systematic review in lowand middle-income countries that a lack of height-adjustable examination beds caused a challenge in providing healthcare services to persons with disabilities. current study findings on the availability of equipment and that equipment were in working order are in contrast with many other african studies that found a lack of equipment and broken equipment (bright & kuper 2018; eide et al. 2015; vergunst et al. 2015). not being able to access and use a bathroom is not acceptable. the lack of a call button is a serious safety oversight. participants thought that the staff’s knowledge on issues related to sci was insufficient. øderud (2014) identified similar challenges in neighbouring zimbabwe. services were mostly received from clinics and offered by general care providers who are not specifically trained in the management of sci, a less common condition. thus, persons with sci might have to ‘educate’ their primary care providers in sci-related issues as also suggested by goodridge et al. (2015). this implies that persons with sci must have a good understanding of their own condition. the finding that availability of prescribed medication was overall generally poor could be because in botswana all drugs are sourced from the central medical stores (cmss). therefore, if items are unavailable at the cms, they would be unavailable to all facilities in the country. it appears that availability of prescribed medications was slightly better for health posts followed by clinics and worst in hospitals. this could possibly be attributed to prescribing patterns and hospitals being staffed with highly trained personnel as opposed to clinics and health posts where the training of staff might be of a more basic nature. also, in most health posts and some clinics, the same person is prescribing and dispensing; it is likely that they might selectively prescribe medications, which they know are available. however, a lack of drugs and equipment has been identified as a barrier to healthcare access in other african settings (eide et al. 2015; mulumba et al. 2014; vergunst et al. 2012, 2017) and the problem might be bigger than the supply system in botswana. availability of sci-related consumables was also generally poor, with hospitals faring slightly better in this regard. the reason for better availability of sci-related consumables in hospitals might be attributable to the presence of more skilled personnel at hospitals as opposed to other facilities, and the finding that service providers at hospitals had more knowledge on sci than at the other points of service provision. doctors are authorised to order all items in the non-drug cms catalogue and those not in the catalogue through special request procedures. in clinics, orders to cms are performed by nurses and sometimes healthcare auxiliaries who are not authorised to order all cms items and cannot put in special requests. in addition to challenges with availability, accessibility challenges might have negatively impacted quality of care. the government of botswana aims that every member of its population should be living within a 5 km radius of a primary care facility (seitio-kgokgwe et al. 2014). this aim was achieved for the study population. however, this distance seems to be too far for people with sci and other physical disabilities as the majority of participants were not able to reach the facility with ease. similar to participants in other studies (vergunst et al. 2015), most of the participants used their wheelchairs to access primary care. however, as also found by vergunst et al. (2015), some of them needed assistance to reach the facility with the wheelchair. this demonstrated a lack of independent community mobility and may be because of inappropriate mobility assistive devices (e.g. lack of motorised wheelchairs), a lack of access to public transportation and/or to the physical environment (baart & taaka 2017; löfvenmark et al. 2016). roads in gaborone and surrounds are often not tarred and even the tarred ones do not have wheelchair-accessible walkways (löfvenmark et al. 2016). in the light of participants already struggling to access primary care, it is a challenge that referrals to other services were not supported by transport services as increased distances to these services will undoubtedly increase transport challenges and cost. both variables have been identified as widespread and serious barriers to healthcare access in africa (baart & taaka 2017; bright & kuper 2018; eide et al. 2015; øderud 2014; van rooy et al. 2012; vergunst et al. 2017). the cost and effort involved might lead to nonattendance with detrimental health consequences. limitations all persons with sci who could be identified in the study setting were asked to participate in the study. even so some groups or individuals who differed in important ways from those identified might have been excluded such as persons who went to south africa or elsewhere for care, those who were unable to access the system, for the same reasons as in the study but possibly extreme variations, and those who may have died prematurely. therefore, one has to be careful when generalising findings to all persons with sci in the study setting. it is especially important to take cognisance of the possibility that those who died of complications because of lack of access could influence the picture significantly. not being able to include this group was an inherent and significant limitation of this study that affects all the results. not being able to identify many participants with sci because of non-traumatic causes was unfortunate as this subgroup might differ considerably from the larger population of persons with sci and comparison between the two groups would have enhanced findings and recommendations from the study. the questionnaire was self-developed and not tested for reliability and validity. the primary author provided care to most of the participants in the past, although not at primary care facilities. this previous relationship might have influenced responses and caused social desirability bias in responses because participants might view him as part of the healthcare system and thus hesitate to share negative experiences. conclusions primary care services were for the most part affordable and adequate. however, more than a third of participants indicated dissatisfaction with services. this in conjunction with accessibility, acceptability and availability challenges like transport and structural barriers, as well as a lack of knowledge, consumables and drugs, leads to the conclusion that there is room for improvement in the services. recommendations general awareness and knowledge on the management of sci and the consumables and drugs persons with sci need from primary care services must be raised. it is recommended that spinalis, as the specialist sci unit in the setting, develops and provides outreach training and ongoing support in this regard. primary care facilities should acquire at least one height-adjustable examining couch per facility and one toilet in each facility should adhere to international standards for wheelchair users. transport should be offered to people with mobility impairments who are referred to other services. local government representatives must be educated on the barrier that inaccessible road surfaces create in community mobility for persons using wheelchairs. moreover, lobbies must promote the need for universally accessible public transport. botswana federation of the disabled is ideally suited to take on this responsibility. botswana ministry of health should start a national data list on persons with sci, because of both traumatic and non-traumatic causes. it is recommended that the knowledge and understanding of people with sci on their condition is studied. it is also recommended that the knowledge and understanding of primary level healthcare service providers on sci is studied. further study is also necessary to determine if rtcs do lead to unduly high incidence of sci in botswana. if this is indeed the case, health promotion activities focused on road safety should be initiated or enhanced in botswana. acknowledgements the authors wish to thank participants who took part in this study as well as their families. they also thank the staff at princess marina orthopaedic department and botswana spinalis rehabilitation unit for their assistance in identifying the participants. competing interests the principal investigator, a medical doctor, has been employed in various positions at pmh and spinalis. he therefore has provided professional services to most of the participants. authors’ contributions t.m.m.p.-m. conceptualised the study, collected and analysed data, and provided input to the manuscript. s.j.v. and g.m. were involved in the project design and provided conceptual contributions to the research. s.j.v. drafted the manuscript. ethical considerations the study was approved by the health research ethics committee at stellenbosch university (reference number: s14/10/241), and permission was also obtained from the botswana ministry of health ethics committee (reference number hpdme 13/18/1 ix (386) and the princess marina hospital ethics committee (reference number pmh 5/79(215)). participation in the study was voluntary and no data were collected before written informed consent was obtained. confidentiality was maintained at all times. where healthcare needs were identified during data collection, participants were referred to appropriate services. 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limitations conclusion acknowledgements references appendix 1 about the author(s) tak wing yu department of physiotherapy, university of the western cape, cape town, south africa liezel ennion department of physiotherapy, university of the western cape, cape town, south africa citation yu, t.w. & ennion, l., 2019, ‘participation restrictions and vocational rehabilitation needs experienced by persons with a unilateral lower limb amputation in the western cape, south africa’, african journal of disability 8(0), a456. https://doi.org/10.4102/ajod.v8i0.456 original research participation restrictions and vocational rehabilitation needs experienced by persons with a unilateral lower limb amputation in the western cape, south africa tak wing yu, liezel ennion received: 15 nov. 2017; accepted: 28 sept. 2018; published: 10 june 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: vocational rehabilitation (vr) aims to rehabilitate a person with an amputation back into actively participating in society. even though lower limb amputation (lla) surgery is commonly performed in south africa (sa), little research has been published on the participation restrictions experienced by and vocational needs of persons with lla in the western cape (wc). objectives: the aim of this study was to determine and explore the participation restrictions and vr needs of persons with a unilateral lla in the wc. method: a mixed-methods approach and a sequential exploratory design were utilised to collect data from 50 persons with an lla. participants were conveniently sampled within the cape metropole region of the wc, sa. the world health organization disability assessment schedule 2.0 (whodas 2.0) tool was used to collect the quantitative data, and telephonic interviews were conducted for qualitative data collection. results: a third (28%) of participants in this study were unemployed, and only 14% (n = 7) of the participants owned or used a prosthesis. in addition, 50% of the participants either had a disability grant or were on pension. the participation restrictions identified were mainly related to mobility where 74% (n = 37) of participants had extreme difficulty with mobility in general, 92% (n = 46) struggled with walking distances longer than 1 km and 80% (n = 40) had extreme difficulty in completing household tasks quickly. the main vr needs identified in this study were the inadequate rehabilitation services that target ambulation (standing and walking) to facilitate employment. conclusion: persons with a unilateral lla still experience significant difficulties in mobility 3 months post-amputation, which negatively affects their participation in society and vocational activities. keywords: physical therapist; lower limb amputations; participation restriction; rehabilitation, vocational rehabilitation needs. background south africa (sa) has a total population of 51.8 million people of which 25% are economically active (world bank 2017). within the total population, 7.5% experience some kind of disability (who 2017). disability is normally associated with mental or physical impairments; these impairments hinder the capability of a person to do or complete his or her tasks. it is important to have a system that is able to identify these impairments before treatment or assistance can be given. considering that poverty predisposes disability and disability places an increased financial demand on the person with a disability, vocational rehabilitation (vr) should therefore be a priority in sa (hughes 2003). vocational rehabilitation is referred to as a process of engaging and re-engaging work with a person (escorpizo et al. 2011). although vr will address the problem, the underlying reasons, participation restrictions of persons with a lower limb amputation (lla), need to be identified first. to date, there is no literature available on the participation restriction or vr needs of persons with lla in the western cape (wc), sa. persons with a disability face many challenges when interacting with their environment. two of the most important barriers identified by the world health organization, disability and health (who) are the physical and environmental barriers and challenges with accessing health services (who 2017). central to these challenges are usually either (1) a lack of disability-friendly facilities or (2) a mobility impairment that was not adequately addressed through rehabilitation (who 2017). persons who have undergone an lla will experience either a temporary or a permanent decrease in mobility as a result of physical impairments in balance and proprioception or a lack of access to prosthetic technology (bragaru et al. 2011; yazicioglu et al. 2007). in sa where there is already limited access to healthcare and assistive technology, mobility impairments and environmental barriers would further restrict participation in society (ennion, johannesson & rhoda 2017; ennion & rhoda 2016). the hypothesis for this study was that persons with an lla in the cape metropole would not be actively participating in vocational activities such as employment, recreational sports and hobbies and therefore require more focused vr. methods the study was conducted in the cape metropole district in the wc province of sa. a mixed-method approach and a sequential explanatory design were utilised (creswell 2014). the mixed-methods approach lends itself to using both quantitative and qualitative instruments in one study to gain an in-depth understanding of the research problem (creswell 2014). for the quantitative phase, 50 participants were conveniently sampled from a tertiary government hospital (n = 35), a private subacute hospital (n = 3) and through snowball sampling (n = 12). male and female participants over the age of 18 years, and at least 3 months post-major unilateral lla, were included in the study. no participants with neurological impairments were included in the study, as it might negatively affect their participation in society and bias the study findings. for the qualitative phase of the study, eight participants were conveniently selected from the initial sample of 23 out of the 50 participants who consented to participate in an in-depth telephonic interview. a basic demographic survey was developed by the researcher to capture information such as age, gender, race, cause of amputation, level of amputation, use of prosthesis, as well as the level of education and household income. the world health organization disability assessment schedule 2.0 (whodas 2.0) tool was used to collect data regarding participation restrictions (who 2001). the whodas 2.0 is a validated and standardised likert scale survey. the world health organization disability assessment schedule 2.0 has eight parts in the questionnaire focusing on different areas, namely understanding and communicating, ambulation, self-care, socialising, life activities, health-related difficulties and participation in society (who 2001). permission was obtained online from the who to use the english whodas 2.0 for research purposes. the participants completed the demographic survey along with the whodas 2.0 in the presence of a researcher who would assist them in clarifying the questions they did not understand in the survey. once the participants had completed the whodas 2.0, the data were captured in the statistical package for the social sciences (spss version 22) for analysis. after the completion of the quantitative phase, a semi-structured, telephonic interview guide (appendix 1) was developed based on the results of the whodas 2.0 (who 2001). the questions were aimed at exploring the underlying reasons for the challenges with mobility and participation in society (reported in the whodas 2.0). it further explored the participants’ experiences with post-amputation rehabilitation and identifying any vr needs that could potentially facilitate active participation in society. out of the 50 participants who completed the whodas 2.0 in the quantitative phase of the study, 23 participants initially consented to participate in the second phase of the study. these 23 participants were contacted telephonically, but 12 participants could not be reached on the telephone number that they provided. a further three participants refused to continue participating in the study. even though the optimal sample size for conducting interviews is 10–12, only eight participants were willing to participate in the telephonic interview in the second phase of the study (creswell 2014). during the interview audio was recorded. once the interview was completed the interviews were transcribed verbatim by the researcher and the researchers’ assistant. the whodas 2.0 results provided four themes: participation restriction, self-care, life activities and mobility. within the four predetermined themes, the qualitative data were then analysed using creswell’s (2014) six-step process of thematic analysis. the interviews were first organised and prepared for the data analysis. after preparing, the researcher read through the interviews to get a general idea of the data collected and then started to put codes next to the different items. themes were then identified and reviewed. ethics clearance was obtained from the university research ethics committee, and permission to access patients was obtained from the medical manager from the respective hospitals. permission was obtained from the provincial department of health (doh) to gain access to the patients’ database and medical records at the tertiary hospital. in addition, permission was granted by the head of the physiotherapy department for the researcher to come back and investigate their departmental statistics to contact patients on their database. potential participants’ medical folders were retrieved and reviewed against the inclusion criteria to establish their suitability for the study. the same process was followed to review statistics and identify potential participants from the weekly wound clinic where persons with an lla would return for follow-up. suitable participants were contacted to arrange a convenient time to complete the whodas 2.0 at the hospital. data were collected over a period of 12 months. the purpose of the study was explained to each participant, and written informed consent was obtained from all participants before their participation. the participants completed the demographic survey followed by the whodas 2.0. additional patients were recruited from a private subacute hospital. permission to conduct the research was obtained from the relevant departments of the private subacute hospital. in the subacute hospital’s facility, the patients were identified by the physiotherapist in charge of the ward and written informed consent to participate was obtained. once the physiotherapist at the private subacute hospital obtained consent, the researcher was notified. the researcher then met with the patients in the ward to collect data. furthermore, the researcher set a time frame and place with the participants who were recruited via snowball sampling, where the participants would complete the questionnaires. ethical considerations this project obtained ethical clearance from the senate research committee of the university of the western cape (clearance number: 15/4/33). results in this study, the majority of participants (72%; n = 36) were males. the mean age of participants was 57 years (standard deviation [sd] ±12 years and range is 23–77 years). when considering the participants’ racial distribution, 62% (n = 31) were mixed race people, 26% (n = 13) were white people and 8% (n = 4) were black people (table 1). table 1: demographic details of the participants who completed the whodas 2.0. the majority of participants (52%; n = 26) suffered a trans-tibial amputation and only 14% (n = 7) had a prosthesis. of those who had a prosthesis, only one was employed. in the total population (n = 50), 22% (n = 11) of the participants were employed at the time of data collection. furthermore, 50% (n = 25) of the participants received a disability grant or were on pension. the remaining 28% (n =14) did not fill in this section. in the first phase, the whodas 2.0 was used to collect the data. there are six sections in the whodas 2.0 which look at different aspects of health and disability of the participants (table 2). in both the ‘understanding and communication’ and ‘getting along with people’ sections, only 2% (n = 1) experienced difficulty. in the ‘getting around section’, 60% (n = 30) had great difficulty. in the ‘self-care’ section, 8% (n = 4) struggled. only 8% (n = 4) of participants had problems in the ‘life activity’ section, while 22% (n = 11) of the participants experienced problems in the final section of ‘participation in society’. the total scoring that led to those percentages could not be calculated because of missing data. table 2: world health organization disability assessment schedule 2.0 sections results. from the whodas 2.0, participants reported having most difficulty with ‘getting around’ and ‘participating in society’. when considering the individual questions under the ‘getting around’ section, 75% (n = 35) of the total participants had moderate to extreme difficulty with standing for a long period of time. in addition, 92% (n = 46) of the participants struggled with walking long distances (± 1 km). it was also identified that 80% (n = 40) of participants struggled to do their housework quickly. under the ‘participating in society’ section, 60% (n = 30) reported to have been emotionally affected. moreover, 62% (n = 31) of the population reported that they struggled to participate in relaxing (recreational activities) without the support and assistance of family members or friends (table 3). table 3: percentage of participants that had experienced difficulty in the world health organization disability assessment schedule 2.0 sections. a chi-squared test was used to identify whether there is a significant relationship between the components of the whodas 2.0 questionnaire. three tests were executed: mobility (getting around) and participation in society, age and mobility, and age and participation in society. the first chi-squared test showed a statistically significant relationship (p = 0.012) between scores for the mobility (getting around) and ‘participation in society’ sections of the whodas 2.0. to further explore the significant relationship between mobility and participation in society, age was introduced. two chi-squared tests were performed between age and mobility. the age and mobility chi-squared test showed no significant relationship (p = 0.44). in the third chi-squared test with age and participation in society, it also resulted in no significant relationship (p = 0.197). in the qualitative phase, eight participants participated in a semi-structured telephonic interview. table 4 provides an overview of the demographic details of the participants in the second phase of the study. table 4: demographic details of the participants in the qualitative phase. from the semi-structured interviews, the underlying reasons for challenges with mobility that arose were (1) poor balance, (2) an inability to stand for longer periods of time, (3) poor cardiovascular endurance which limited their walking distance and (4) fear of falling. because of the limited number of participants who were employed and the challenges with mobility that most participants experienced, very few vr needs could be identified from the interviews. participants generally expressed a need for (1) prolonged acute rehabilitation to improve mobility and (2) vr aimed at creating employment opportunities. poor balance in this study, the participants reported challenges to maintain their balance which affected their mobility. ‘… my balance is completely out….’ (participant b, male, unemployed) ‘yeah, yeah, to balance myself [is a problem] yeah.’ (participant f, male, unemployed) standing for longer periods of time even though standing is a relatively simple functional task for a person with an lla, the participants reported that they struggled with standing for a long period of time. ‘no. i couldn’t stand for a long time.’ (participant e, male, unemployed) ‘very difficult, because i had to hold onto something.’ (participant b, male, unemployed) difficulty in walking long distances furthermore, participants who could not stand for long periods of time also had difficulty in walking long distances. ‘no, i can’t walk so long, because i get tired quickly.’ (participant c, male, unemployed) ‘[walking makes me] very tired.’ (participant a, female, unemployed) fear of falling another factor that arose when participants were asked to explain why they have challenges with mobility was the fear of falling. some participants were eager to mobilise initially, but experienced a fall, which left them too scared to try again. ‘yes, it does help, but i’m scared that i’m going to fall.’ (participant a, female, unemployed) ‘because i can fall you see.’ (participant f, female, unemployed) inadequacy of acute rehabilitation participants in this study generally felt that their acute post-operative rehabilitation was too short to prepare them adequately for discharge to their home environment and in some instances even basic mobility. in some instances, participants were only issued with crutches on discharge from hospital and not taught how to be functionally mobile with them. therefore, because of the early discharge the participants struggled with mobility which prevented them from participating in their daily activities. this also caused a participation barrier as they were not adequately prepared on how to face the challenges at home and in the community. these challenges included lack of ability to walk long distances, basic mobility and use of crutches. this further hindered their attempts to return to formal employment. ‘no, no, no they never taught me, but i have ramps now my uncle made a ramp.’ (participant a, female, unemployed) ‘no i didn’t get any physio.’ (participant g, male, unemployed) vocational rehabilitation aimed at employment opportunities most of the participants in the study struggled with mobility. in addition, the majority of the participants who participated in interviews were retired or unemployed; hence, information on vr needs was limited. even though 75% (n = 6) of the participants indicated that they wanted to work, they either struggled to find alternative employment opportunities after losing their limb or there was simply no employment available for them. considering sa’s generally high rate of unemployment, the job market is very competitive and an additional challenge for persons with a physical disability. participants, however, expressed that rehabilitation aimed at improving access to the job market would be greatly beneficial. ‘the only thing that i have a problem is finding a job….’ (participant c, male, unemployed) ‘i can’t work, but i would love to. i can, if i, you see, this is a thing that lays heavy on my….’ (participant b, male, unemployed) discussion this study aimed to address two objectives. firstly, to determine the participation restrictions experienced by the study sample and, secondly, to explore the participation restrictions in more depth and determine the vr needs. the findings of this study provide new insights into the participation restrictions still experienced by the study sample at a minimum of 3 months post-surgery. even though some participation restrictions are expected among persons with a unilateral lla, the underlying reasons for these restrictions are rarely explored, but have now been voiced by the participants themselves. even though limited information pertaining to vocational needs could be obtained, the majority of participants would have liked to work, if they had access to the opportunity. this highlights the need for vr to be an integral part of rehabilitation of persons with amputations. in the first phase, using the whodas 2.0, results were similar to what is reported in other international studies; lla significantly negatively impacted mobility in this cohort (bragaru et al. 2011; yazicoioglu et al. 2007). approximately one-quarter of participants (22%) reported having a problem in participating in community activities; however, 70% reported difficulty standing and balancing, and 92% reported having difficulty in walking long distances. walking and standing are crucial activities of daily living and play a major role in participation in society (manini 2011). on the contrary, in contrast yazicioglu et al. (2007) stated that participants could regain their pre-morbid functional independence with the aid of a prosthesis. their study findings are in conflict with the results of our study because even with the assistance of the prosthesis, the participants of this study still had challenges with their mobility. in the second phase of the study, telephonic interviews were conducted to explore the underlying reasons of participation restrictions and determine participants’ vr needs. participants struggled with integration back into society. the participants provided feedback on the inadequate acute rehabilitation received as a major factor that hampered their re-integration into society. the inadequate acute rehabilitation also potentially hindered the employment opportunities and hobbies available to participants. burger and marincek (2007) reported conflicting results where two-thirds of persons with an lla in their study sample were still able to return to work, with a slight adjustment in the environment. returning to work after an lla requires a good self-esteem and a series of rehabilitation and adjustments to a person’s surroundings, which participants in the current study did not receive. in this study, the main vocational need identified was employment opportunities. based on the data collected, it was found that many participants wanted to work but could not do so because of inadequate rehabilitation or employment opportunities. this study recommends that persons with an amputation should receive adequate rehabilitation while in hospital to adequately prepare them to re-integrate into society. alternatively, persons with a unilateral lla should be transferred to a subacute rehabilitation facility until they can achieve independent functional mobility in the community. independent mobility, and a home visit to evaluate the home environment, should be considered the minimum requirements for discharge from rehabilitation. where appropriate, persons with an lla should be screened and provided access to prosthetics, which could increase mobility and, consequently, participation in society. rehabilitation professionals should also emphasise the re-integration into society and include a vr assessment as part of therapy. the high unemployment rate in sa (world bank 2017) may prove to be a significant challenge to providing employment opportunities for persons with physical disabilities, but health professionals should adequately rehabilitate persons with an lla to have a fair chance to access the job market, as well as advocate for more opportunities. study limitations because of the long periods of delays in different facilities, and limited permission to only access two healthcare institutions (tertiary hospital and subacute hospital), only 50 participants were recruited for the study over a period of 12 months. limited information was also captured in the demographic survey pertaining to types of employment. participants were only asked if they were employed or not. in addition to the low participant sample size in the first phase of the study, many participants also refused to participate in the telephonic interviews in the second phase, which further limited the available sample for the qualitative phase of the study. another factor that limited the available sample size for the second phase of the study was challenges because of missing or incorrect contact numbers or participants not answering their phones. even though data saturation was reached in the qualitative phase, a study sample of 10–12 participants in the interviews would have been more representative of the initial study sample. therefore, eight participants are not representative of the 50 surveyed, as four of the eight participants were white people and only one was a female participant. it should be noted that the results should therefore be interpreted with caution. it, however, provides a glimpse of insight into the challenges experienced with participation in society post-lla. conclusion the difficulty in mobilising independently negatively affected the study cohort’s participation in society and vocational activities such as work. the underlying reasons reported, which could be addressed by adequate rehabilitation, were poor balance, poor cardiovascular endurance and the fear of falling that developed after the amputation. in addition, the participants reported inadequate rehabilitation and assistance in employment. the deeper insight gained into the underlying reasons for these participation restrictions can potentially assist to inform and develop patient-centred vr programmes for persons with a unilateral lla. acknowledgements the authors would like to thank the national research foundation (nrf) for the bursary to conduct the study. they would also like to thank all the participants for participating in this study. lastly, the first author would like to thank the supervisor, dr liezel ennion, for her support and guidance throughout this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions this article was conceptualised by both l.e. and t.w.y. t.w.y. collected the data, analysed it and drafted the article, and l.e. supervised and reviewed the article. funding funding for this study was provided by the national research foundation of south africa (nrf). references bragaru, m., dekker, r., geertzen, j.h.b. & dijkstra, p.u., 2011, ‘amputees and sports: a systematic review’, sports medicine 41(9), 721–740. https://doi.org/10.2165/11590420-000000000-00000 burger, h. & marincek, c., 2007, ‘return to work after lower limb amputation’, disability and rehabilitation 29(17), p.1323–1329. https://doi.org/10.1080/09638280701320797 creswell, j.w., 2014, research design: qualitative, quantitative, and mixed method approaches, sage, london. https://doi.org/10.1007/s13398-014-0173-7.2 ennion, l., johannesson, a. & rhoda, a., 2017, ‘the use of a direct manufacturing prosthetic socket system in a rural community in south africa: a pilot study and lessons for future research’, prosthetics and orthotics international 41(5), 455–462. https://doi.org/10.1177/0309364616683982 ennion, l. & rhoda, a., 2016, ‘roles and challenges of the multidisciplinary team involved in prosthetic rehabilitation, in a rural district in south africa’, journal of multidisciplinary healthcare 9, 565–573. https://doi.org/10.2147/jmdh.s116340 escorpizo, r., reneman, m.f., ekholm, j., fritz, j., krupa, t., marnetoft, s.u. et al., 2011, ‘a conceptual definition of vocational rehabilitation based on the icf: building a shared global model’, journal of occupational rehabilitation 21(2), 126–133. https://doi.org/10.1007/s10926-011-9292-6 hughes, c., 2013, ‘poverty and disability’, career development and transition for exceptional individuals 36(1), 37–42. https://doi.org/10.1177/2165143413476735 world bank, 2017, the world bank annual report 2014, viewed 29 september 2017, from https://openknowledge.worldbank.org/handle/10986/20093. world health organization, 2001, international classification of functioning, disability and health, international classification of functioning, disability and health (icf), world health organization, geneva. https://doi.org/10.1055/s-0033-1338283 world health organization, 2017, disability and health, viewed 29 september 2017, from http://www.who.int/mediacentre/factsheets/fs352/en/. yazicioglu, k., taskaynatan, m.a., guzelkucuk, u. & tugcu, i., 2007, ‘effect of playing football (soccer) on balance, strength, and quality of life in unilateral below-knee amputees’, american journal of physical medicine & rehabilitation 86, 800–805. https://doi.org/10.1097/phm.0b013e318151fc74 appendix 1 telephonic interview questions a: participation restrictions can you please tell me what you are struggling with since you have lost your leg? did you receive rehabilitation (exercises) in the hospital? did you feel that it helped you to be more independent at home? can you recommend anything else that might help other people that should have been included? do you have a problem going out into your community? did you face any problems when you’re doing tasks in your community? are there any barriers that hinder your assistive devices or movement? do you feel ashamed because of your disability? do they look down on you because of your loss of limb? how did your family respond to your disability? what do you want to do when you want to relax? do you have any hobbies or fun activities? is there anything that makes it difficult to enjoy that activity? b: self-care at home: do you have challenges when staying at home alone? what makes it difficult for you to stay alone? what do you struggle with when you stay alone? do you feel safe to do normal activities when no one is around you? for example, bath/make tea/cook does your house require a lot of work for you to do? are you able to freely move around in your house? with/without your assistive device c: life activities: is there any chores/house work that you cannot do after your amputation? link the below what do you think you need to overcome the struggles? are there any struggles with the assistive device that you have currently? what type of household responsibilities do you struggle with? what hinders you is in doing the household tasks? what is preventing you in doing your task quickly? does that affect your work/go to school: is there any difficulties in attending school/work? what would you recommend therapists do for improving your working abilities? d: getting around: do you have any challenges when you travel to different places? public transport how far what makes it difficult to stand for a long period of time? is it challenging stand up from sitting? why do you struggle/what makes it difficult to stand up from sitting? is it challenging to stand up? how long can you generally stand for before you need to sit down? what do you struggle with when you try to move around at home? what makes it difficult for you to walk long distances? why do you need this break? why do you struggle abstract introduction methods results discussion limitations future work conclusion acknowledgements references about the author(s) anand mhatre human engineering research laboratories, department of veterans affairs, united states department of rehabilitation science and technology, university of pittsburgh, united states international society of wheelchair professionals, university of pittsburgh, united states daniel martin international society of wheelchair professionals, university of pittsburgh, united states matt mccambridge international society of wheelchair professionals, university of pittsburgh, united states norman reese international society of wheelchair professionals, university of pittsburgh, united states mark sullivan international society of wheelchair professionals, university of pittsburgh, united states don schoendorfer international society of wheelchair professionals, university of pittsburgh, united states eric wunderlich international society of wheelchair professionals, university of pittsburgh, united states chris rushman international society of wheelchair professionals, university of pittsburgh, united states dave mahilo international society of wheelchair professionals, university of pittsburgh, united states jon pearlman human engineering research laboratories, department of veterans affairs, united states department of rehabilitation science and technology, university of pittsburgh, united states international society of wheelchair professionals, university of pittsburgh, united states citation mhatre, a., martin, d., mccambridge, m., reese, n., sullivan, m., schoendorfer, d., wunderlich, e., rushman, c., mahilo, d. & pearlman, j., 2017, ‘developing product quality standards for wheelchairs used in less-resourced environments’, african journal of disability 6(0), a288. https://doi.org/10.4102/ajod.v6i0.288 original research developing product quality standards for wheelchairs used in less-resourced environments anand mhatre, daniel martin, matt mccambridge, norman reese, mark sullivan, don schoendorfer, eric wunderlich, chris rushman, dave mahilo, jon pearlman received: 31 may 2016; accepted: 27 june 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: premature failures of wheelchairs in less-resourced environments (lres) may be because of shortcomings in product regulation and quality standards. the standards published by the international organization for standardization (iso) specify wheelchair tests for durability, safety and performance, but their applicability to products used in the rugged conditions of lres is unclear. because of this, wheelchair-related guidelines published by the world health organization recommended developing more rigorous durability tests for wheelchairs. objectives: this study was performed to identify the additional tests needed for lres. methods: first, a literature review of the development of iso test standards, wheelchair standards testing studies and wheelchair evaluations in lres was performed. second, expert advice from members of the standards working group of the international society of wheelchair professionals (iswp) was compiled and reviewed. results: a total of 35 articles were included in the literature review. participation from lres was not observed in the iso standards development. as per wheelchair testing study evidence, wheelchair models delivered in lres did not meet the minimum standards requirement. multiple part failures and repairs were observed with reviewed field evaluation studies. iswp experts noted that several testing factors responsible for premature failures with wheelchair parts are not included in the standards and accordingly provided advice for additional test development. conclusion: the study findings indicate the need to develop a wide range of tests, with specific tests for measuring corrosion resistance of the entire wheelchair, rolling resistance of castors and rear wheels, and durability of whole wheelchair and castor assemblies. introduction there remains a vast need for quality wheelchairs around the world. the world health organization (who) estimates that 10% of people with disabilities (around 111 million) require a wheelchair and only about 5% – 15% have access to an appropriate one, suggesting that the unmet need is approximately 95 million wheelchairs (borg & khasnabis 2008; handicap international 2013; world health organization 2011). to address this need and improve the quality of life of wheelchair users and others with disabilities, international organisations are promoting improved accessibility to appropriate technology. for example, the united nations convention on the rights of persons with disabilities (un-crpd), which has been ratified by 156 countries, specifically mentions the importance of assistive technologies (ats) in eight of its articles (4, 9, 20, 21, 24, 26, 29 and 32) (united nations 2006). article 20 of the un-crpd which focuses on personal mobility indicates that state parties must facilitate personal mobility for people with disabilities that is affordable, high quality and includes relevant training. although there is widespread ratification of the un-crpd, progress on its implementation is hampered by lack of understanding of disability issues, provision of quality services, training, coordination and guidance to support member states to implement changes (international disability alliance 2010). many initiatives are underway to address wheelchair affordability, quality and relevant training. to accelerate the implementation of un-crpd initiatives, the un partnered with who in 2013 and initiated a programme called the global cooperation on assistive technology (gate) (world health organization 2014). as a part of this programme, who recently published a priority assistive products list which among other includes both manual and attendant-propelled wheelchairs with and without postural support options (world health organization 2016). the who, furthermore, has published guidelines for provision of manual wheelchairs in less-resourced environments (lres) and developed wheelchair service training packages in partnership with the united states agency for international development (usaid) (borg & khasnabis 2008; world health organization 2012, 2013). the international society of wheelchair professionals (iswp) was formed in 2015 with a seed grant from usaid to the university of pittsburgh (international society of wheelchair professionals 2015). the iswps’ mission is to professionalise the wheelchair sector by promoting standardisation of wheelchair services, coordinating wheelchair activities and raising awareness of the need for proper wheelchair services around the world. while many international efforts are in progress, it has been noted that provision of high-quality products is challenging because of lack of controls (regulations), adoption of product and service provision standards, funding, disability inclusion in policies, trained personnel and awareness in lres (borg, lindström & larsson 2011; marasinghe, lapitan & ross 2015; oderud 2014; sheldon & jacobs 2006; visagie, duffield & unger 2015a; visagie, scheffler & schneider 2013). a key document outlining mobility needs in lres are the who guidelines, which specify best practices for wheelchair design, production and supply, with a focus on increasing the quality of products (borg & khasnabis 2008). the guidelines emphasise the consideration of the unique environments of lres when designing for strength and durability. outdoor environments in lres often include unpaved and soft surfaces, muddy roads, potholes, high curbs, gravel, sand, water, steep inclines and inaccessible buildings and public spaces (borg & khasnabis 2008; chakwizira et al. 2010; constantine, hingley & howitt 2006; glumac et al. 2009; hotchkiss 1985; kim & mulholland 1999; rispin & wee 2015; sheldon & jacobs 2006). manoeuvring over rocky surfaces and obstacles exposes wheelchairs to heavy shocks and persistent vibrations. varying seasonal conditions, elevated temperatures and high humidity (borg & khasnabis 2008) foster increased corrosion, ageing and wear. such unique conditions place additional requirements on wheelchair durability which can cause premature failures if the product quality is poor (borg & khasnabis 2008; marasinghe et al. 2015; sheldon & jacobs 2006). failures in the community because of product design-environment mismatch can cause consequences such as accidents, frequent repairs and breakdowns (borg & khasnabis 2008; cooper et al. 2004; fitzgerald et al. 2005; gaal et al. 1997; kim & mulholland 1999; toro et al. 2012; visagie et al. 2013, 2015a). user behaviours are also different in lres compared to those in resourced environments (res), which should be considered during wheelchair design (borg & khasnabis 2008; glumac et al. 2009; marasinghe et al. 2015; mulholland et al. 1998). for instance, wheelchairs must withstand the stresses caused by rough handling, as they are tossed on and off the roof of a bus (borg & khasnabis 2008). furthermore, they need to be light and compact enough to be agile and easily portable (hotchkiss 1985). additionally, users often leave their wheelchairs outside exposed to the weather, or use them as shower chairs (borg & khasnabis 2008; pearlman et al. 2008). users also frequently transport goods on the push handles, seats, footrests or other parts of the wheelchair as well as carry passengers on armrests or footrests (borg & khasnabis 2008). thus, the diverse functional requirements for wheelchairs impose greater durability requirements on the designs. quality of designs provided in lre contexts varies based on the service delivery and funding methods (oderud 2014; pearlman et al. 2006; visagie et al. 2015a). donated, refurbished and locally produced wheelchair models are often hospital style (see figure 1). these designs are not appropriate for outdoor use as they are based on designs for indoor and institutional use (constantine et al. 2006; glumac et al. 2009; lysack et al. 1999; oderud 2014; pearlman et al. 2006; rispin & wee 2015; sheldon & jacobs 2006; visagie et al. 2015b). in lres, quality is often traded for cost savings as some designs include plastic wheels and cushions which are not durable enough, while some lack features like folding frame and essential parts such as parking brakes, push rims, resilient castors, etc. (constantine et al. 2006; hof, hotchkiss & pfaelzer 1993; oderud 2014; rispin & wee 2015; rispin et al. 2013) which makes the product inappropriate for use. as an example, more than 75% of users (n = 94) were found to be dissatisfied with the durability and weight of unsuitable products that were provided in zimbabwe (visagie et al. 2015b). anecdotal reports mention that donated wheelchairs often last no more than 3–6 months (constantine et al. 2006; sheldon & jacobs 2006; oderud 2014). lack of context-appropriate designs and high-quality products can lead to decreased functional status, secondary health complications, breakdowns and repairs (oderud 2014; visagie et al. 2015a, 2015b). figure 1: hospital style wheelchair. regular servicing and maintenance are necessary for reducing breakdowns, repairs, occurrence of adverse events (e.g. accidents) and improving reliability (chen et al. 2011; gaal et al. 1997; hansen, tresse & gunnarsson 2004; toro et al. 2012). who guidelines recommend conducting user training in basic wheelchair repair and regular maintenance by wheelchair service personnel (borg & khasnabis 2008). however, lack of wheelchair service professionals and limited awareness of best service delivery practices make user training difficult. lack of necessary resources (materials, availability of spare parts, tools and equipment and workshop facilities) for repairs and skilled technical labour create challenges for maintenance (armstrong, reisinger & smith 2007; borg & khasnabis 2008; hof et al. 1993; oderud 2014; sheldon & jacobs 2006; visagie et al. 2013, 2015b). furthermore, if an imported or donated wheelchair breaks down, it is difficult to find replacement parts and expensive to buy or import them (constantine et al. 2006; kim & mulholland 1999; sheldon & jacobs 2006). as a result, breakdowns are not quickly addressed (borg et al. 2011; pearlman et al. 2008) and failures and unavailable repairs can make loss of mobility long term, especially because users in lres do not have backup wheelchairs (hotchkiss 1985). this, in turn, has multidimensional consequences for the user, including reduced satisfaction and increased likelihood of device abandonment (fitzgerald et al. 2005; phillips & zhao 1993). thus, the lack of repair options in lres makes the need for durable chairs even greater. the aforementioned problems with product quality and their corresponding impact on the user’s quality of life were highlighted during a consensus conference held in 2006 by several experts and stakeholders involved in wheelchair provision in lres (sheldon & jacobs 2006). the outcome of this conference was the development of who guidelines that called for testing of wheelchairs delivered in lres. the who guidelines further advocated using international wheelchair testing standards developed by the international organization for standardization (iso) as a basis to develop and adopt national standards in lres. the iso 7176 series includes wheelchair standards that are intended to apply universally to all contexts, and many national standards committees have adopted iso 7176 (borg & khasnabis 2008). for instance, in united states, the rehabilitation engineering society of north america (resna) standards committee under american national standards institute (ansi) approval has led the development of ansi/resna standards which are mostly consistent with iso 7176 (cooper, boninger & rentschler 1999; rehabilitation engineering society of north america 2009). the iso 7176 has been adopted in great britain, south africa, china, australia and new zealand as well. these standards address safety, durability, manoeuvrability and transport (international organization for standardization 2014). further recommendation by the who guidelines to improve product quality was to include additional tests to evaluate wheelchairs for environmental, user and resource conditions experienced in lres (borg & khasnabis 2008). with who recommendations in mind, the authors undertook this study to identify exactly which additional tests need to be developed. methods the additional tests suggested in this article were based on a literature review of wheelchair standards development, wheelchair standards testing and wheelchair field evaluations in lres as well as advice from a group of experts. a detailed description of the methods is described below. literature review methods a literature search was conducted on scientific and medical databases from the earliest time permitted electronically using pubmed, cirrie, ebsco host and scopus. keywords used for searching titles (and title or abstract for pubmed) in alphabetical order were: wheelchair + ansi/resna, assessment, comparison, environment, evaluation, iso, performance, review, standards and testing. there was no limitation placed on the year of publication. duplicates were removed and titles of the selected articles were screened by the author and assisting researcher and saved for further screening. articles were then retrieved using the university of pittsburgh library. further review of articles based on abstracts was carried out by the author and the researcher. if any article was deemed relevant to the topics of interest by only one reviewer as per the abstract, then both reviewers read through the article to determine its relevance. studies on motorised wheelchairs, scooters and manual suspension wheelchairs were not taken into account as the available wheelchairs used in lres are mostly manual (hof et al. 1993). the articles that were deemed relevant were read entirely and reviewed by the author and other researcher for inclusion in this literature review. references found from screened articles were searched using pubmed and google scholar or physically retrieved. included articles were categorised into the three categories: (1) iso standards development, (2) wheelchair testing with iso standards and (3) field evaluation studies reporting wheelchair failures in the community. studies conducted in res were excluded from the third category. data collection and analysis were performed by the primary author. the articles related to iso standards were evaluated for understanding whether lre conditions were considered during the test method development process. extracted elements from studies on iso wheelchair testing included wheelchair sample size, iso durability testing results and part failures. for articles related to wheelchair evaluation in lre communities, information was retrieved on study design, wheelchair iso qualification, maintenance status and field failures. expert advice advice on additional test development was sought from nine members of the iswp standards working group (iswp-swg). this expert group is composed of wheelchair manufacturers, designers and providers from charitable organisations and field experts with work experiences in lres. all experts were familiar with iso 7176 test methods. information on failures in lres and test development was collected through biweekly group discussions through web conferencing via adobe connect (adobe systems incorporated 2016). iswp-swg members provided pictures of broken and inoperable parts that they had collected through their work to demonstrate the types of failures common in lres. group discussions were centred around these failures that are not predicted by iso 7176 tests. the failure photos were instrumental in gaining consensus about the common failures and making suggestions for the additional tests needed. votes were taken within the group to nominate parts for testing consideration. additional test method identification a systematic process was used to generate a prioritised list of the new tests recommended from this work. first, a product testing matrix was generated that includes a column listing the failures common in lres that were identified through the literature review and by the members of the iswp-swg. test conditions responsible for failures were noted. second, experts determined whether the test conditions are already included in iso 7176. third, if a need for additional testing was identified, an effort was made to leverage existing test methods from relevant iso standards, american society for testing and materials (astm) standards and united states military standards (mil-spec). if it was determined that a suitable test method did not already exist, members from the iswp-swg made suggestions for new test methods. voting was carried out in the group to select test methods to be developed by iswp. results the flow chart outlining the selection process of articles is shown in figure 2. of the 1112 citations retrieved and 15 citations found through references of screened articles, 35 articles met the inclusion criteria and were categorised and analysed further. figure 2: flowchart of article selection process for review. international organization for standardization standards development international organization for standardization work commenced in the early 1980s with participation from uk, sweden, germany, france, denmark, united states, canada, austria and japan (cooper et al. 1996a; mclaurin 1986; staros 1981), but no lres were involved. in the 1990s, the iso committee developed and published wheelchair standards (cooper et al. 1996a; hobson 1999) and expanded participation (international organization for standardization 2014). currently, there are 24 countries participating in the iso standards committee (plus 11 observing countries) including brazil, china and india which are considered less-resourced countries. working groups under this subcommittee typically meet twice a year for developing new standards and revising existing standards (cooper et al. 1996a). there are now 34 standards published by the committee with expanded categories that include power wheelchairs, scooters and stair-climbing devices. standards specify disclosure requirements for testing and methods of measurement for: static stability (§1), dynamic stability (§2), brake effectiveness (§3), energy consumption (§4), wheelchair and seat dimensions (§5), maximum speed, acceleration and deceleration (§6), determination of seating and wheel dimensions (§7), static, impact and fatigue strength testing (§8), climatic testing (§9), obstacle climbing ability (§10), test dummy specifications (§11), power and control system (§14), flammability requirements (§16), electromagnetic compatibility (§21), setup procedures (§22) and vocabulary (§26) (international organization for standardization 2014). in all, wheelchair standards tests consist of durability, safety and performance tests along with measurement and reporting of wheelchair dimensions and characteristics. some test procedures allow for comparison between wheelchair safety and performance, while certain tests need the wheelchair to pass minimum requirements (cooper et al. 1996a; hobson 1999; international organization for standardization 2014). the iso 7176-8 suite of durability tests includes tests for strength, impact and fatigue which primarily assess a wheelchair’s quality. strength tests require static loading of armrests, footrests, handgrips, push handles and tipping levers. impact tests are conducted with a test pendulum on backrests, hand rims, footrests and castors. fatigue tests consist of a multidrum test (mdt) of 200 000 cycles and a curb-drop test (cdt) of 6666 cycles (see figure 3). failures of the mdt and cdt are classified into three classes: class i and class ii failures are because of maintenance issues and can be fixed by a user or dealer, while class iii failures are caused by structural damage and require a major repair or part replacement (cooper 1998). a class iii failure indicates failure of the test. figure 3: multidrum test (left) and curb-drop test (right) without test dummies. wheelchair testing with international organization for standardization standards the literature review on wheelchair testing with iso standards focused on 12 articles (cooper et al. 1996b, 1997, 1999; cooper, stewart & vansickle 1994; fitzgerald et al. 2001; gebrosky et al. 2013; liu et al. 2008, 2010; rentschler et al. 2001; toro et al. 2013; wang et al. 2010; zipfel et al. 2007) that deal with laboratory testing of different wheelchair designs. included were hospital style (hwc), lightweight (lwc) and ultra-lightweight (uwc) wheelchairs (see figure 4). wheelchair models were in new condition and were already available on the market. information regarding their prior iso testing was not available. some testing studies referred to ansi/resna standards. table 1 presents study results from iso section 8 tests and lists the observed failures. among different designs, uwcs were found to be more durable and cost-effective compared to lwcs and hwcs except in the most recent study by liu et al. (2010). uwcs experienced higher class i failures that could be repaired by users, whereas hwcs had greater class iii failures (fitzgerald et al. 2001). figure 4: lightweight wheelchair (left) and ultra-lightweight wheelchair (right). table 1: findings from the international organization for standardization standard testing studies of manual wheelchairs. wheelchair field failure evidence failures found in field studies with different wheelchair models are listed in table 2. five of the reviewed studies (armstrong et al. 2007; reese & rispin 2015; rispin et al. 2012, 2013; toro, eke & pearlman 2016) evaluated usability or durability aspects of wheelchairs designed for lres. these models (see figure 5) have passed iso durability tests (hof et al. 1993; usaid 2014) and were developed by non-profit organisations (pearlman et al. 2008; rispin et al. 2013). they are adjustable and more appropriate for rigorous use in rugged lre conditions (hotchkiss 1985; sheldon & jacobs 2006; toro et al. 2016; visagie et al. 2015a, 2015b, 2016). despite wheelchairs passing iso testing, breakdowns and failures occurred frequently and within months of the wheelchair being delivered, which reinforces the recommendation from the who guidelines that additional tests should be developed. figure 5: wheelchair models designed for less-resourced environment use. table 2: field failures of manual wheelchairs in less-resourced environments. expert advice from international society of wheelchair professionals standards working group members the iswp-swg members are co-authors of this article and their expertise is listed in table 3. table 3: international society of wheelchair professionals standards working group member profiles. international society of wheelchair professionals standards working group members reported minimal lre participation in iso 7176 standards development. they noted several product quality issues and failures seen typically in lres as seen in figure 6. service delivery method and the status of maintenance, repairs and user skills training for wheelchairs in figure 6 are unknown. these failures and breakdowns are irrespective of location of manufacture (locally produced or imported) and the context for use (res or lres). iswp-swg members identified certain unique quality-affecting elements such as corrosion, ageing and high impact forces (e.g. if a wheelchair is dropped from a bus) as causes for these failures. these elements are not present in iso durability tests. rapid breakdowns of components such as upholstery, anti-tippers, belt harness, calf straps, toe straps and fasteners were noted as durability issues that are not tested under iso 7176. figure 6: failures noted by international society of wheelchair professionals standards working group experts on wheelchairs designed for less-resourced environment use. figure 6 (continues…) failures noted by international society of wheelchair professionals standards working group experts on wheelchairs designed for less-resourced environment use. additional test methods identification to identify new tests, a product testing matrix as shown in table 4 was put together that lists failure modes of different parts and the applicability of iso test methods for predicting each failure mode. testing priority was assigned by consensus from experts based on parts that fail most often and make the wheelchair non-functional. the lack of standard test methods (iso, astm and mil-spec) for predicting most failure modes on wheelchair parts led iswp-swg to identify new test methods. table 4: product testing matrix. castors and rear wheels were selected as crucial components that break down quickly in lres and were prioritised for testing and test method development. corrosion was identified as a variable that affects most wheelchair parts and was likewise prioritised for testing. testing a complete wheelchair through simulated environmental conditions was considered as well. discussion provision of appropriate, high-quality products is recommended in lres as wheelchairs are subjected to adverse environments. additionally, access to maintenance and repair services is limited in lres. to ensure reliability of products, the who guidelines recommend conducting product testing based on iso 7176 wheelchair standards. current iso test methods simulate conditions for urban paved environments and thus the development of additional test methods has been recommended for lres based on typical conditions seen there (borg & khasnabis 2008). following this recommendation, a prioritised list of tests was developed in this study through a literature review and feedback from experts to help predict wheelchair failures in lres. participation of less-resourced environments in standards development as mentioned previously, there is little representation from lre nations on the iso testing committee, and consequently test methods do not completely reflect conditions in lres. while who guidelines suggest using iso 7176 as the basis to develop new standards for lres (borg & khasnabis 2008), no new standards for this purpose have yet been proposed. also, iso standards testing has been carried out in resourced countries for more than 20 years for regulatory and research purposes, but no reports were found showing implementation of iso 7176 in lres thus far. wheelchair durability the iso testing studies included in this review were conducted in an independent testing laboratory mostly on wheelchairs provided in res. results from table 1 show that manual wheelchairs overall lack standard product quality, especially hwcs that resemble the majority of designs distributed in lres (constantine et al. 2006; kim & mulholland 1999; pearlman et al. 2008; zipfel et al. 2007). around 70% – 90% of hwcs failed to pass minimum durability requirements (cooper et al. 1996; fitzgerald et al. 2001; toro et al. 2013; zipfel et al. 2007). similar wheelchair designs produced in lres (toro et al. 2013; zipfel et al. 2007) failed prematurely. higher incidences of class iii failures with hwc designs indicate higher rates of breakdown and repairs during use, which is evident from anecdotal reports (oderud 2014; visagie et al. 2015a, 2015b) and reviewed field studies (mukherjee & samanta 2005; saha et al. 1990; toro et al. 2012, 2013). on the other hand, uwc designs were found to be durable and experienced fewer frame failures with iso tests. this test outcome was predictable because uwcs are sophisticated wheelchair designs with superior quality materials that are designed for performance in developed environments and iso durability tests subject wheelchairs to conditions that simulate such environments (borg & khasnabis 2008; sheldon & jacobs 2006). field evidence with active users in res has been reported with uwcs which shows positive satisfaction and fewer repairs in last six months of use (fitzgerald et al. 2005). however, these designs are not suitable for lres owing to high costs associated with their materials and manufacturing. overall, it can be concluded that iso durability tests are suitable to test wheelchair designs like hwcs that break prematurely and uwcs that are developed for performance in res. durability of international organization for standardization-qualified models field evaluation studies have been carried out with iso-qualified wheelchairs appropriate for lres. four such field studies reported failures, repairs, replacements and missing parts over two weeks to eight months of field use (armstrong et al. 2007; rispin et al. 2012, 2013; toro et al. 2016). wheelchairs in two of these short-term studies were provided based on who guidelines (borg & khasnabis 2008; world health organization 2012, 2013), maintained frequently and favoured by the users (armstrong et al. 2007; toro et al. 2016). one study (reese & rispin 2015) assessed iso-qualified appropriate wheelchairs after 1–2 years of use which were provided without user training and serviced occasionally. several part failures were found that would require a technician’s attention (see table 2). findings from these studies demonstrate that failures occur on iso-qualified models with everyday use especially with parts such as brakes, tyres, seat covers, castors, footrests and armrests. field failures can be associated with product properties such as substandard material quality, poor parts selection, inappropriate design and manufacturing inconsistencies. these properties can vary with the locally produced versions of certain iso-qualified wheelchairs like the whirlwind roughrider which makes them prone to early failure. moreover, lre environments are harsh and can degrade products rapidly. iso test qualification is representative of 3–5 years of outdoor use (cooper 1998; hobson 1999) but apparently falls short of qualifying products for lre use based on reviewed study results. accurate prediction of life duration of certain wheelchair parts may not be guaranteed. wheelchair failures failures seen with iso testing in the laboratory were similar among wheelchair designs. fractures with cross braces, side frames (at weld joints), backrests, castor spindles and footrests were found to be common in these studies. failures were influenced by frame design, wheelchair material, screw holes, welding techniques and castor and tyre characteristics. however, failure modes observed with iso testing are rare in the field based on field failure evidence gathered through literature review and failure evidence provided by iswp-swg members (see figure 4). dominant field failures found in lres are flat and cracked tyres, wobbly rear wheels, bent frames, non-functional brakes, worn out bearings, damaged armrests, torn seat covers, loose upholstery, collapsed cushions and rusting and loosening of several parts. any representation of these failures is not evident in iso testing results which mostly produces fracture failures caused by impacts on mdt and cdt. this is because test conditions employed on iso durability tests do not simulate environmental and demanding use conditions from lres. to accurately predict failure modes and life duration of products for lres, it is necessary to develop additional testing methods for lres with relevant test conditions. iswp-swg experts echoed similar advice. identification of additional test methods the product testing matrix developed through consensus of experts highlights the requisite test factors (conditions) for testing products for lres. the matrix assisted in development of additional test methods for lres. based on availability of resources and capacity for development with iswp partners in the swg, four test methods were given high priority – castor durability testing, rolling resistance testing, corrosion testing and whole chair testing. castor failure was noted as a top concern in the field as per iswp-swg experts. castors experience a variety of failure modes with tyres, bearings and stem hubs and iso tests primarily subject castors to vertical loads and stresses. hence, experts suggested that castor durability testing should be conducted separately. incorporating amplified and angular loading patterns along with corrosive conditions and various types of simulated surfaces including sand, mud, gravel and stones is recommended for the new castor test method. such testing is estimated to screen castor designs for greater durability, requiring less maintenance and incurring fewer repairs in lres. corrosion of wheelchairs was observed as a critical concern because several wheelchair components are unable to operate after being rusted. although iso testing includes climatic testing of wheelchairs in hot and cold environments for power wheelchairs only, it does not simulate moisture and acidic exposure. it is known that corrosion adds to the effect of fatigue during field use for certain wheelchair parts like bearings. this calls for conducting fatigue and corrosion testing simultaneously. experts recommended corrosion evaluation of the complete wheelchair similar to already established standards like astm b117. resistance to wheelchair rolling was also identified as a major performance issue in lres. while resistance characteristics for rubber on different surfaces are known to an extent, propelling wheelchairs over a variety of surfaces requires a significant user effort (armstrong et al. 2007; oderud 2014; rispin & wee 2014). wheels experience a range of rolling resistances based on variation of elastic rebound between the tyre and different surfaces, tyre tread design, type of tyre (pneumatic vs solid), camber angle, toe-in and toe-out alignment, type of spokes and characteristics of the axle hub bearings. castors are also known to have greater rolling resistances based on tyre diameter, characteristics, surface, the type of materials used and bearing efficiency. thus, testing to evaluate the rolling of wheels and castors, which is not a part of iso 7176, is being considered in the new test methods. comparing the rolling resistance of different types of available wheels and castors is critical so that performance products can be selected. the iswp-swg recognises that the entire wheelchair suffers from different types of loads and effects of environmental factors causing wear (ultraviolet light, high temperature, dirt and dust) and corrosion (humidity and water exposure). none of the iso tests subject wheelchairs to a combined effect of these test factors. hence, testing the complete wheelchair simultaneously against relevant test factors to replicate failures as seen in the field is suggested. observations from field studies field studies that provided wheelchairs as per who guidelines (armstrong et al. 2007; toro et al. 2016) indicated that appropriate services, user training and regular maintenance are necessary to reduce the rate of field failures. however, lres struggle with capacity for appropriate services. provision of user training, funding and access to repair services is limited (armstrong et al. 2007; borg & khasnabis 2008; hof et al. 1993; oderud 2014; sheldon & jacobs 2006; visagie et al. 2013, 2015b) which was evident in field studies as well (mukherjee & samanta 2005; reese & rispin 2015; rispin et al. 2012, 2013; saha et al. 1990). in the wake of such concerns, international efforts focused on increasing capacity and improving service provision in lres are ongoing (international society of wheelchair professionals 2015). while such efforts are in progress, it is equally necessary to develop products with greater reliability and higher durability to reduce failure occurrences and prevent breakdowns. this perspective has been shared by the who guidelines as well which stress the parallel need for appropriate services and high-quality products (borg & khasnabis 2008; united nations 2006). development of durable, high-quality products, in turn, calls for development of rigorous test methods which were identified in this study. limitations this study is limited by the variable methodologies and availability of evidence. the study pulls evidence from iso testing studies and field evaluation studies combined with expert recommendations to determine additional product quality tests. based on the review, a low level of evidence for products used in lres is available to inform additional test development for lres. twelve research articles were included in this literature review on wheelchair testing and only two studies reported results with wheelchairs used in lres. although the usaid report (usaid 2014) on wheelchairs recommends iso testing of wheelchair designs appropriate for lres, full-fledged iso testing studies with such designs are not yet conducted. findings from such studies could have assisted in understanding the failures in the laboratory and directed the additional test development. field evidence in the review was limited in many respects. numbers of failures, repairs and replacements were provided in four studies out of which two were conducted in a rehabilitation facility and two evaluated hwcs (armstrong et al. 2007; shore 2008; shore & juillerat 2012; toro et al. 2012, 2013, 2016). otherwise, only different failure types were reported. there was a lack of evidence on whether failures led to breakdowns (usually caused by severe damage to frame, castor or rear wheel) except for one study on donated wheelchairs (mukherjee & samanta 2005). several studies involved modifications to the products prior to evaluations which could have affected the failure outcomes (reese & rispin 2015; toro et al. 2012). nearly all studies with iso-qualified appropriate models (reese & rispin 2015; rispin et al. 2013; toro et al. 2012, 2013, 2016) involved paediatric populations whose functional requirements from a wheelchair, use practices, hours of use per day, method of propulsion and maintenance abilities are different from the general population. in a broader population of adults, it is expected that failures would be quicker and more severe with the same designs. there were no long-term studies which could have allowed for better comparison with iso tests. also, no comparison studies were found between res and lres. among the iswp-swg experts, only one comes from lre. as expert advice was sought in this study, there is a potential for expert bias in this study. photographs collected as evidence were only available from end-of-life chairs which may indicate extreme damage to the part, with limited knowledge of the age or conditions of use of the chair. future work following development of test methods, the iswp-swg group plans to suggest new test methods to the iso standards committee as a new or add-on standard to iso 7176 or as a technical specification so that they are harmonised with national standards. product quality testing using these additional standards could then be included as part of regulatory policies that governments of less-resourced countries adopt, or as part of the who gate initiative. these standards can support implementation of the un-crpd article 20, which many countries around the world have agreed to adopt. validation of the new test methods is an important step to assess correlation with performance seen in the field, and will be conducted through research studies in lres in collaboration with manufacturers and charitable organisations. manufacturers and wheelchair designers in lres will be encouraged to implement iswp test methods for testing newly designed parts, custom components and wheelchair prototypes. parts with low testing priority will be tested as resources are available. conclusion the goals of this work were to identify the additional wheelchair tests necessary to screen products for lres as suggested by the who guidelines and wheelchair consensus conference (sheldon & jacobs 2006; borg & khasnabis 2008). through literature search and review, several studies were found that tested products on iso 7176 laboratory tests and in lres. however, none investigated testing products for lre-like conditions in laboratory settings. this is the first study addressing developing standard test methods for lres. published evidence combined with field observations by iswp-swg experts indicates that wheelchairs fail in lres in ways that would not be predicted by iso 7176 tests. additional test methods are required that incorporate test factors responsible for the diverse failures seen in lres. the additional tests that were identified include testing for castor durability, corrosion because of the environmental conditions, rear wheel and castor rolling resistance and whole chair durability. the iswp-swg is in the process of developing and validating these additional test methods. results from such testing can assist manufacturers and designers in understanding deficiencies in materials and in discovering design flaws that make the product unsuitable for lre conditions. additionally, information from test results can inform providers and clinicians in lres regarding durability and reliability of products which can guide wheelchair selection and delivery. acknowledgements the authors would like to thank baron kim for his assistance with literature search, casey rayburg for screening and reviewing articles and michael lain at the human engineering research laboratories for his valuable help on this work. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced the writing of this article. authors’ contributions a.m. and j.p. were responsible for the study concept and design. a.m., j.p., d.m., m.m., n.r., m.s., d.s., e.w., c.r. and d.m. were responsible for acquisition, analysis and interpretation of evidence. a.m. was responsible for drafting the manuscript. j.p., d.m., m.m., n.r., m.s., d.s., e.w., c.r. and d.m. were responsible for critical revision of the manuscript for 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health organization, geneva. zipfel, e., cooper, r.a., pearlman, j., cooper, r. & mccartney, m., 2007, ‘new design and development of a manual wheelchair for india’, disability and rehabilitation: assistive technology 29(11–12), 949–962. https://doi.org/10.1080/09638280701240672 abstract introduction the theoretical framework the context aim and objectives research methods and design data analysis findings discussion strengths and limitations recommendations conclusion acknowledgements references footnotes about the author(s) unati stemela-zali department of rehabilitative sciences, faculty of health sciences, university of fort hare, east london, south africa harsha kathard department of disability studies, faculty of health sciences, university of cape town, cape town, south africa maximus m. sefotho department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa citation stemela-zali, u., kathard, h. & sefotho, m.m., 2022, ‘the matrix of linguistic exclusions impeding career construction for d/deaf learners’, african journal of disability 11(0), a935. https://doi.org/10.4102/ajod.v11i0.935 original research the matrix of linguistic exclusions impeding career construction for d/deaf learners unati stemela-zali, harsha kathard, maximus m. sefotho received: 30 aug. 2021; accepted: 28 jan. 2022; published: 13 june 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the purpose of this research study was to explore how d/deaf learners in the eastern cape province of south africa constructed their careers and what types of support were available for them to do so. the study found that among the support required, support for their linguistic development, particularly sign language acquisition, was critical in home, school and community settings. objectives: the objective of this study was to highlight the multiple linguistic exclusions faced by d/deaf learners in the eastern cape, which negatively impacted their career construction. method: savickas’s theory of career construction framed this analytical-qualitative case study. the study was conducted in two out of four schools for the d/deaf in two districts of the eastern cape, south africa. data were gathered via four participant groups viz. deaf learners, their parents, teachers and officials of the department of basic education, as well as through document reviews. results: the results indicated that multiple linguistic exclusions for these learners begin early in their lives and continue into their school years and beyond. these experiences at home, school and in social contexts combined impact negatively career construction and its prospects. conclusion: this study concluded that linguistic exclusions experienced by deaf learners are created by a combination of systemic factors, which impede the career construction of d/deaf learners. implications and suggestions for advancing their linguistic inclusion are discussed. keywords: d/deaf; sign language; education; exclusion; inclusive education; careers. introduction since the salamanca statement in 1994, the international discourse in education has focused on inclusive education (pather 2019; salamanca 1994). inclusive education was aimed at combatting discriminatory attitudes and the development of inclusive communities to achieve education for all (pather 2019). this statement was made in the same year when south africa as a country obtained its democracy. however, 27 years post-democracy in south africa, d/deaf learners continue to be marginalised. learners who are d/deaf or severely hard-of-hearing who use sign language as a communication medium, in particular, have been provided little attention in the aspect of inclusion because of their relatively small number and low visibility (csizér & kontra 2020). the south african department of basic education refers to education as a tool to address previous inequalities that were imposed by the apartheid government. the apartheid regime introduced segregation among racial groups, which included schools. most relatively affluent white communities had better-resourced schools and services (storbeck & martin 2010), and remained in big cities with good infrastructure, while the black people were forced to live mostly in the homelands, which were not considered to be part of south africa. this segregation negatively affected the resources of the schools for1 deaf people in the former homelands where this study was conducted. in order to address this imbalance, the government’s redress strategies were designed to empower south africans with equal education (the constitution of the republic of south africa 1996). people of south africa, including persons with disabilities, must be empowered through education to facilitate their socio-economic freedom. the department of basic education in south africa envisions that all south africans should have access to lifelong learning, education and training opportunities. this would, in turn, contribute to improving the quality of life, thereby building a peaceful, prosperous and democratic south africa (department of basic education 2017). in the recent speech of the minister of basic education, it was mentioned that the ministry of basic education believes that an inclusive education system makes an immense contribution towards an inclusive economy to serve an inclusive society (motshekga 2022). providing learners with special education needs gives access to quality basic education programmes, and is found to be imperative based on the constitutional social justice principles of equity, inclusivity and redress. education is a necessary tool to bring about change in a society, the economy and the ideologies of the world (wfd 2018). education imparts abilities, information and recognition, which positively influence employment and earnings (kelly, quagliata & perotti 2016). deaf people must satisfy the same educational attainments as hearing people to compete in the job market (kelly et al. 2016). the literature shows that inevitably, compromised text literacy skills displayed by deaf adults impact the education and employment of deaf school leavers (glaser & van pletzen 2012). this situation could be prevented by providing education for deaf learners on par with that offered to hearing children through equal language access. deaf learners can fully access education through a signed language, and their educational needs can be most efficiently, equitably and cost-effectively met in south african sign language (sasl) centres where schooling in all subjects would be provided through the medium of a signed language (aarons & akach 2002:153 in glaser & van pletzen 2012). in education, language plays an important role in imparting knowledge. the minister of basic education mentioned that the programme of early childhood development offers the foundations for lifelong learning where learners are exposed to in 2009, included language, motor skills, perceptual skills, problem-solving, basic numeracy, self-regulation, executive functioning and the love for learning (motshekga 2022). however, this programme was referring to the majority of learners with no hearing impairment who attended matric examinations in 2021. in the speech, there was no mention of inclusive early childhood development programme, which would provide the desired educational outcomes for learners who are d/deaf nationally. the purpose of this study was to explain the linguistic exclusions faced by learners who are deaf in the eastern cape of south africa. the term ‘d/deaf’ is used in this article to acknowledge the cultural deaf and clinically deaf persons concurrently. this is also to avoid making assumptions about the identity choices of persons with deafness. d/deaf learners in the eastern cape province require good education for economic inclusion and participation. by highlighting these exclusions, the authors hope that policymakers and implementors will develop strategies to reduce or eliminate exclusions. the lessons learnt in this case study may find resonance with other countries, which may share similarities with south africa. the knowledge generated contributes to the research already available on secondary and post-secondary education and training for d/deaf students in african countries, which is described as very little (glaser & van pletzen 2012). according to the literature, exposing d/deaf children to sign language early in life has positive developmental and educational benefits (hall, hall & caselli 2019). on language ideologies and epistemic exclusions, kiramba from kenya argues that teaching in one language only and not accommodating home languages for non-english speaking learners in schools exclude them in education. considering other languages offers an inclusive alternative to education approaches (kiramba 2018). in zimbabwe, musengi argues that if deaf people are supported in using sign language for communication, then they should be permitted to receive education in sign language, otherwise they are being discriminated against through ‘audism’ (musengi 2019). we already know from the literature that there is2 ‘a critical period’ (birth to early teenage years) for language development for children, in general; however, d/deaf children born to hearing families usually pass this period without being exposed to spoken or signed languages (cheng, halgren & mayberry 2018). this lack of linguistic exposure affects the educational trajectories of these children and subsequently their career construction. the literature does not offer specific information on how d/deaf learners’ career construction is affected by linguistic exclusions. this study contributes to the knowledge gap in the effects of linguistic exclusions experienced by d/deaf learners in the eastern cape of south africa’s career construction. the theoretical framework the theory of career construction developed by savickas in 2001 provided a lens that framed this article, which addresses and explores the career construction of deaf learners in the eastern cape. the theory of career construction explains the interpretive and interpersonal process through which individuals impose meaning and direction on their vocational behaviour. the career construction theory addresses how the career world is crafted through individual3 constructivism and social4 constructionism (savickas 2005). it emphasises that individuals create representations of reality but do not make reality itself. careers do not unfold; they are constructed as individuals make choices that express their self-concepts and substantiate their goals in the social reality of work roles. this theory has stimulated the current study, as its philosophical position and assumptions align with the interests of the researcher and have guided in knowledge generation. career construction was found to be a powerful framework that promotes the self-determination of d/deaf learners excluded through language (kwon 2017). the career construction theory accepts that people are different, and that acceptance includes people with disabilities in career construction. the theory can enhance adaptations that can improve how environments can allow persons with disabilities to access careers of their choice (rudolph, zacher & hirschi 2019). this study focuses on the matrix of exclusions for d/deaf learners with a special interest in linguistic exclusions. the study explores the role played by d/deaf learner individuals and the context in the matrix of exclusions. the findings were interpreted against the assumptions of this theory. the theory mentions a dichotomy of conditions to be met for successful career construction: these are individual constructivism and social constructionism. it will be instrumental in exploring whether the dichotomy conditions are met and may assist in describing what contributes to these being met or not in the study context. the theory also assists in revealing how these conditions influence each other, how one would not succeed with individual constructivism if the environment hinders social constructionism. the context the context in which deaf learners from the eastern cape find themselves is defined by the adverse effects of historical colonisation, where global colonialism resulted in economic oppression and the general underdevelopment of the global south. the goals of global colonisation were to exploit and dominate the people and resources of the global south (maldonado-torres 2018). while the colonial administration ended in south africa in 1961, the apartheid government ruled from 1961 to 1994, which deepened racial discrimination in the education system even further. while official colonisation and apartheid ended, south africa continues to experience the impacts of colonisation (oliver & oliver 2017). although the era of colonialism is long gone, its effects are still evident more so in the former homelands and their institutions. mashau refers to this colonial phenomenon as a dead snake that continues to raise its head through public squares and churches. he says south africa as a country still feels the hangover of the past apartheid (mashau 2018). this study was carried out in the eastern cape, a province created in the post-apartheid period, when south africa was divided into nine provinces. the eastern cape province of south africa is rated as the second poorest province in the country (stats sa 2011). most of it is a previous homeland, transkei, suffering high rates of poverty, unemployment and disability. the province is predominantly rural, mostly composed of black south africans. the children referred to in this case study predominantly come from the deep rural areas, semi-urban and townships. children from this background receive a poor start to life compared with those in the more affluent parts of the country and the world. this disparity is associated with the political and socio-economic history and the under-resourced education system in this province. their poor start affects their education and career trajectories, which later negatively impacts their economic activities and contributions. in comparison with other provinces in the country, the eastern cape performed poorly in education (stats sa 2016). it is argued in this study that the linguistic exclusions in education experienced by d/deaf learners are influenced by their context. the case study was conducted in 2020 in two of the high schools, which serve the deaf population of the eastern cape. from the post-apartheid era to date, 47 schools serve the deaf population in south africa. in the eastern cape, there are four public schools for the d/deaf, with all these schools starting from the foundation phase and taking learners through to matric. two of these four high schools were included in the study. the settings of these high schools are different, one in a more rural setting and the other in a semi-urban setting. the resourcing of these high schools was very similar. from the literature, we already know that in south africa communication support for d/deaf education is pivotal and yet lacking (ngobeni, maimane & rankhumise 2020), leading to a high dropout rate in education. d/deaf children need linguistic support from home, school and beyond, which would grant them linguistic inclusion and enable them to achieve their career aspirations better. aim and objectives this study aimed to highlight linguistic exclusions experienced by d/deaf learners in the eastern cape. the objective was to describe the multiple facets of linguistic exclusions experienced by d/deaf learners in the eastern cape and their possible causes. research methods and design study design this study adopted a qualitative research methodology (creswell 2007). a descriptive case study design was adopted because the researchers wanted an in-depth understanding of the factors influencing the career construction of d/deaf learners. study population and sampling strategy the study population included four participant groups: the d/deaf learners from high school who were enrolled in grades 10–12 (n = 38), their parents (n = 19), the teachers involved in the career guidance of the learners (18) and members of the department of basic education responsible for career guidance in deaf high schools (n = 3). the documents for review were five (n = 5). a purposeful sampling strategy was used. data collection the data were collected using multiple methods, which included focus group discussions, individual interviews (face-to-face and telephonic) and document review. the multiple methods of data collection reduced and neutralised the bias and weakness of using the same data collection method (creswell 2013). data analysis thematic analysis was used to analyse the findings and generate themes to guide the discussion of these findings (nowell et al. 2017). themes were formulated considering the aims and objectives of this study. the data were organised according to the different settings where linguistic development is expected to reflect. the data were analysed using a three-level synthesis to understand the phenomena of multiple linguistic exclusions in this case study (vaismoradi et al. 2016). in the end, themes are abstracted using the theory of career construction and its concepts of individual constructivism and social constructionism to make meaningful knowledge production. data representation the data are presented as direct quotations from the participants. the quotes of participants included in this article were selected to represent all participants and all areas of discussion and interviews related to the linguistic challenges that influenced how careers were constructed. ethical considerations the study was conducted in accordance with the helsinki declaration (ethics approval no. herc ref:015/2018). the operational guidelines as per the ministerial consent for non-therapeutic health research with minors of 2015 were also considered. learners who were under the age for consenting signed an assent form instead. participants were given consent letters that explained all the details including the freedom to withdraw at any stage of the study with no penalty involved. findings in this article, linguistic exclusion is presented as a theme representing multiple ways of exclusion. the linguistic exclusion was found to be a critical form of exclusion that is a challenge for d/deaf learners in this context. we present language exclusion within different settings as discussed below. linguistic exclusion this case study has identified exclusions of d/deaf children in language, socio-economic, curriculum, career information, extra-curricular, sports and policy implementations. however, the most challenging of these exclusions and the one that has a significant impact on education and its outcomes is linguistic exclusion. this exclusion occurs in multiple settings for the learners, at all life stages beginning from early life to adulthood, and this, directly and indirectly, excludes them from education. they are excluded in learning sign language before entering the school, during school years and throughout life. home settings parents of the learners in this study have communicated their inability to communicate with their children. one of the parents said: ‘[t]he problem is that my child speaks in a difficult way and i cannot speak to her. i don’t know if she speaks to her friends and sisters because it is them who are able to speak with her in detail.’ (parent no. 5, female, interview group 1) in most instances, parents do not know from birth that their children are deaf. the children usually get diagnosed late, mostly at an age of 4 years, where they should be going to pre-school already. children diagnosed with hearing loss are placed in suitable schools late generally due to lack of early identification and intervention programmes in the eastern cape. parents struggle to accept that their children are deaf due to the social stigma associated with deafness or disability, in general. all the dilemmas reported in the home settings by this contribute to the language deprivation and exclusion of these learners. a teacher expressed this concern: ‘some parents delay acceptance of the deafness of their children, they become overprotective and do not teach or communicate to their children. they fear things that may happen to their children when they are not in their sight.’ (teacher no. 2, female, focus group 2) isixhosa is the home language used mainly in the eastern cape and in the homes of the participants; however, isixhosa is inaccessible to these children because they are deaf, and sign language is inaccessible to parents because they have no way of learning it, especially before they know they have a child who may not communicate in their home language. it was also noted during the study that parents from this region have no available support to assist them in learning sign language for communicating with their children, especially before they are placed in schools. this linguistic support limits language learning for d/deaf children. although parents expressed their interest in learning sign language, they were unable to do so because they live far away from the schools, which could be resource centres for them to learn sign language. moreover, their children attended and stayed in boarding facilities of schools for d/deaf children, so the parents would not have much opportunity to use sign language with them. the learners in the study communicated their agitation by the following expression: ‘no that does not happen. they do not know sign language. they only talk; our parents do not know sign language. no, we do not talk to them. our parents do not know sign language; they must be called into the school hall and be taught sign language so we can communicate with them.’ (learner no. 7, male, focus group 1) pre-school settings the system of education does not have public pre-school facilities to prepare d/deaf children for formal education in the eastern cape. one of the teachers reflected a sense of disquiet saying: ‘there are no pre-schools for deaf children and therefore no pre-school preparation. they start late in schools aged ± 12 years and they must do grade one or grade r. at that age, they have to start acquiring language, which is sign language. they only get their names in schools and we know language is important for education. when finally in school now they struggle with education concepts.’ (teacher no. 3, female, focus group 2) the teachers and education officials in special needs education have explained that one of the challenges in educating d/deaf learners in the eastern cape is the children entering school late in terms of their age, with no established language for communication. this pre-school exclusion together with limited home language support affects the education of d/deaf learners. another teacher said: ‘deaf children acquire language very late and this leads to isolation. they are called by names like “isimumu” [which means the mute one] and they are shamed. this isolation and shaming contribute to the parents and children’s lack of confidence to socialise early and acquire language early.’ (teacher no. 1, female, focus group 2) this concern was emphasised by more teachers who said: ‘the school needs some orientation classes to the language of the school because this creates a gap in teaching and learning.’ (teacher no. 3, male, focus group 1) ‘the problem is poor foundation and this is frustrating to teachers.’ (teacher no. 5, male, focus group 1) ‘ideally a child needs to get into a deaf school at age 4 but we are finding that we are getting them there very late in their lives, they have already missed out. we also know that critical age of language acquisition is 3 to 7 years. if you admit a child and introduce a new language to them at age 8 to 9 then it becomes a problem you are setting that child up for failure for a lack of a better word because now in addition to having to give input in terms of language, teaching them language rules you also need to teach them in that language that they have not mastered from a very young age, so automatically the child because of systematic problem has been deemed that they will have academically a problem.’ (official no. 3, female, interview 3) the findings in this pre-school phase setting attest to the structural exclusions because of the unavailability of pre-schools, which could be a resource for early linguistic exposure to d/deaf learners and their parents. the early childhood deprivation of these learners tends to disadvantage them when compared with their hearing counterparts who have access to pre-schools and proper preparation for schooling and education. d/deaf learners enter schools with poor linguistic skills, which are crucial for learning the educational content. a number of research studies have proven that early language development is important for education. if the child has inadequate language, he or she practically has no means of communication, and this includes gaining an education. during school settings linguistic exclusion is also experienced during schooling years, while they are in d/deaf schools, which should cater for their linguistic needs. in the eastern cape, d/deaf schools are still segregated from mainstream schools. in these schools, d/deaf learners are mostly taught by teachers who do not know sign language, some of whom did not receive basic sign language training. a teacher said during the focus group discussions in one of the schools: ‘i just got employed to teach life skills and i was happy to find work, but at the college, i was never given a chance to practice on deaf learners. there is not even a module that covers teaching in special schools or special populations. the sign language i know i have been taught by learners. i was employed in 2016 but got my first sign language training 2 years later in 2018. there is no induction even from the school.’ (teacher no. 5, male, focus group 3) another teacher said: ‘the sign language we have is either self-taught, taught by learners or taught by asking assistance from other teachers.’ (teacher no. 7, female, focus group 2) a third teacher said: ‘there is a barrier while teaching i have to convert english to sign language so i can be able to transfer the knowledge.’ (teacher no. 4, female, focus group 1) this lack of knowledge of sign language by educators leads to inadequate delivery of educational content. the next teacher said: ‘there is a lack of deaf teachers; the teacher aides have limited knowledge of subjects’ content.’ (teacher no. 1, male, focus group 1) most of the teachers in these schools are isixhosa home language users. english, which is the language used to deliver curriculum content is their second language, then sign language becomes the third or fourth additional language to them. during training, english is the assumed language for learning and teaching, and these teachers have to teach the curriculum content in a language that is their second language. it becomes more challenging for them to have to translate the educational content to the third language, which they are learning while they are teaching. this complicates matters for both teachers and learners, and this underpins the linguistic exclusion during school settings. the teachers are also not trained on how to educate learners with disabilities despite the availability of policies that prepare the platforms for inclusive education like white paper 6 and sias (department of basic education 2001). the evidence to support this is when a teacher said: ‘the teachers are not capacitated to deal with learners who have disabilities especially with multiple disabilities.’ (teacher no. 3, male, focus group 3) they also mentioned that in their training they were never capacitated to adapt the general curriculum to sign language, and this causes barriers in the completion of the curriculum designed for each grade: ‘the curriculum has not been adapted to suit the learners who are deaf. the teachers are doing the adaptation and this delays the finishing of the curriculum, it does not get finished.’ (teacher no. 2, female, focus group 3) the teachers also expressed concerns in the assessments of d/deaf learners. due to the different structure of sign language to the english language structure (which is a language of curriculum delivery) learners are assessed unfairly. the teacher said: ‘another challenge is the language. the language structure of sign language and spoken language is not the same. the deaf people write as they talk and this becomes a barrier when they are being assessed.’ (teacher no. 2, female, focus group 3) another teacher shared the same concern and said: ‘the department of education conducts workshops on sign language but the ability of the teachers to use sign language also contributes to curriculum delay, we are not able to finish in time. in the exams, there is no sign language interpreter for deaf learners and poses a challenge during exams.’ (teacher no. 3, male, focus group 3) the learners also expressed their difficulties with the language in their education. one of the learners said: ‘the way we are taught is bad, our teachers speak with their mouths, they write on the board, they move their lips and we are not able to hear. there is no sign language and we are deaf at that time.’ (learner no. 13, male, focus group 1) this expresses the reality of how they are taught, where teachers would be speaking and writing in languages that are not understood by learners. teachers may have been doing this because of their frustrations on the language of communication; however, it brings more frustration to the learners. another learner said: ‘here at school, we are taught subjects like for example english, and we don’t know english, maybe technology and we don’t know technology but its taught, we don’t think we will go to university, we don’t know english, we don’t know even that technology we don’t think we will get to university.’ (learner no. 3, female, focus group 1) this was referring to the exclusion in academic content being delivered in a language that learners cannot access by both hearing and reading. another one said: ‘english words are difficult, we do not understand it, and it is very difficult.’ (learner no. 9, male, focus group 1) the difficulty expressed here could mean that they cannot speak it or write it. maybe, the learners experienced the english language’s linguistic rules to be difficult to learn because the grammatic rules are different from sign language, and therefore, it is experienced as being difficult. for example, another learner’s input was as follows: ‘for example, teachers write and write on the board, we understand nothing in it, no interpretation of what is written, it is just writing.’ (learner no. 4, male, focus group 1) ‘no the education we are getting here is very ugly and it is boring.’ (learner no. 5, female, focus group 1) ‘we do not get interpretations, we bear the pain, the teachers just come and write and we copy what is written.’ (learner no. 1, male, focus group 1) this means that there is no learning happening in the classrooms, as the learners just copy what they do not understand and what has not been interpreted in a language and manner that they follow and understand. the adjectives used by learners in the statements above (ugly, boring, pain(full) or bear the pain) show that there is frustration on the side of learners too concerning the language used in teaching. this is a clear indicator of linguistic exclusion in a school setting. learners further suggested alternative ways, which they believed are more inclusive for them to learn, like technical skills training and teachers getting training in sign language. learners said: ‘we want education with technical training, it will make us understand, and we are just bearing with the one we are getting.’ (learner no. 4, male, focus group 1) ‘the teachers must regularly go for sign language workshops, they must be taught sign language.’ (learner no. 14, female, focus group 1) an example of how themes were developed during data analysis to make sense of the findings is displayed in table 1. table 1: an example of themes developed during data analysis. the figure represents the four themes from the findings that expose the developmental links to the matrix of linguistic exclusion for the d/deaf learners in the eastern cape. it also shows how the themes are linked with the theory of career construction to explain it. discussion this case study has revealed multiple linguistic exclusions for learners who are d/deaf and residing in the eastern cape, as well as contextual issues that worsen these exclusions. it has also shown the cumulative effect of the layers of linguistic exclusion from early life through school years and later into adult life. figure 1 is a representation of linguistic contexts where linguistic exclusions occur for the learners in this study. the context where these learners come from was also instrumental in the lack of support that they experienced. the exploration of the two constructs of career construction theory has shaped the understanding of this study. the first construct of individual constructivism was affected by several issues that are discussed below. the language was important and seemed to be a barrier to individual constructivism. the second construct of social constructionism was also explored and seen as lacking due to contextual barriers. this discussion is organised according to the themes that comprise the matrix of exclusions and the career construction theory used as a framework against which the themes were developed. figure 2 represents the themes that link up to develop the layers of linguistic exclusions for the learners. figure 1: graphical representation of contexts of linguistic exclusion experienced by d/deaf learners. figure 2: the developmental links to the linguistic exclusion matrix. language of communication at home settings the delayed language development from home had an impact on later stages of life in these learners. communication is important for making contact, reaching out to others, satisfying our needs, revealing feelings, sharing information and accomplishing many things (owens, farinella & metz 2015). when there is a barrier in communication, it is impossible to fulfil communication needs. language is a socially shared code used to represent concepts (owens et al. 2015). when we do not share the same language, it is challenging to communicate effectively. a barrier in language translates into less effective communication. communication between learners and parents in home settings was inadequate in the early lives of these deaf children because of the language gaps imposed by deafness and the unawareness of the parents about alternative ways of communicating with their children who cannot communicate through spoken language. these learners did not have access to sign language early in their development and could not access oral languages like isixhosa, which is the language spoken at their homes. the missed opportunity to develop or learn a language at home before school is an exclusionary linguistic factor that generally impacts their socialisation as well as their education career trajectories. the home settings become the inner layer in linguistic exclusion as the children navigate through childhood development to school. when the children entered schools, they brought an inadequate linguistic foundation to a context that assumed linguistic preparedness. in this case, this preparedness did not exist. the home language for d/deaf learners in this study is isixhosa, the parents and hearing siblings speak this language. deaf children cannot access the spoken language because of deafness, and therefore, they do not develop their home language and cannot access it either. this lack of linguistic exposure in early life leads to delayed language development as children were not supported to develop language skills at critical ages. the development of language is key in developmental milestones. it involves a series of steps, such as bodily growth, for being able to express it, cognitive preparedness to receive and interpret it. the availability of good language models to imitate and practice with and also for encouragement and guidance is crucial (ritonga & sofyani 2018). for these learners, some important language supports were not available for language acquisition. language development in early childhood is important for early learning and developing social skills (owens 2014). children learn the language first and later use the language to learn in schools; this is a normal development in terms of milestones (owens 2014). for these learners, the poor linguistic foundation is a deprivation that contributes to the early exclusions, which later negatively impact their education. the linguistic support that could help these children would be the availability of support for their parents to have an alternative language to communicate. the benefits of early access to sign language or any natural language lead to believing that the most effective way to reduce language deprivation in children generally is to expose them to, and immerse them in, language as early as possible in their development (hall et al. 2019). the suggested early linguistic exposure lays a good foundation for preparing children for the next milestone of life, which is to be prepared for schooling. late language acquisition for education in settings before the school entry the findings revealed that teachers and educational officials were greatly concerned by the level of linguistic unpreparedness that d/deaf learners presented with when they entered the school. they were also concerned about the ages at which children are enrolled into schools for the first time. the effects of linguistic unpreparedness had negatively impacted on the education of the learners and the teachers. the linguistic unpreparedness for schooling becomes an early exclusion for d/deaf learners before entering schools. this is the second layer of exclusion from language leaning experienced by d/deaf learners in the eastern cape in the early years. their late language acquisition delays their education progress because when children enter school, they only learn their language basics at a school-going age (±7 years). instead of learning the grade 1 content, learners must still learn their sign language names and basic communication like greetings, turn-taking, etc. in hearing children, who have been to pre-schools the picture is very different. late language acquisition becomes an excluding factor in effective foundational education. the next theme to be discussed is the influencer of late language acquisition and what happens in settings before the school entry. contextual issues leading to structural exclusion the context of the province was explained in detail in the early pages of this article to paint a clear picture of the context referred to throughout this article. the contextual issues are presented as the third layer of linguistic exclusions as it influences the linguistic outcomes. in the eastern cape, the first issue is that there are no preparatory schools for d/deaf children, when they enter the school, they are in an environment of learning with no preparedness for it, especially in language. when d/deaf children enter schools, mostly they come from home settings, they have skipped an important preparatory phase for education. when they enter schools for the first time, the teachers mentioned that it is when they receive the deaf identity and are given their deaf names. this milestone in development should have been achieved before the school; however, as there are no pre-schools for the d/deaf children in the eastern cape this does not happen. this challenges the process and progress of learning in classrooms. the second issue is the late identification of hearing loss as mentioned by teachers. they mentioned that hearing loss is identified late by parents because of a lack of early identification and intervention programmes by the eastern cape government institutions. when the diagnosis of hearing loss is finally made, children are placed late in appropriate schools because of there being fewer specialists who should place the learners in suitable schools. this reflects on the poor resourcing of the government facilities. the late identification and placement of learners contribute to early exclusion for these learners because some are not able to catch up with school-age requirements. they reach adulthood while still in the lower grades in school, and this negatively affects their career trajectories and the construction of careers. the health professions council of south africa has a policy on early detection of hearing impairment in new-born babies. this policy is not implemented in this context. reasons for this are not part of the focus of this study. the stigmatisation of disabilities was another issue revealed by teachers, which affect parents in seeking early support for diagnosis and early school placements. this stigmatisation is associated with a lack of awareness and available information on disabilities, leading to delayed support-seeking behaviour by parents. children who are d/deaf and their parents miss out on the early support necessary for their communication and livelihoods. it is that early support that learners from more advantaged contexts may have, which assists in preparing and including them in education. the learners suggested that their parents should be taught basic sign language so that they can communicate with them. the parents expressed their interest in receiving such training; however, in this context, there is a lack of facilities to train the parents in sign language. this deprives both the parents and children of a chance to learn to communicate effectively, thus leading to educational complications and career construction difficulties. language of teaching and learning in school settings the mode of delivery of education content in the curriculum to learners in south africa is mainly english. the learners in this study have expressed difficulty in learning or accessing the language of instruction in education. this is mainly caused by their inability to access verbal forms of communication because of poor hearing, coupled with their challenges in becoming literate in english. this is the fourth layer of linguistic exclusion in this case. the teachers of d/deaf learners are not first-language speakers of english, and they have a challenge of modifying this second or additional language curriculum content into another language, being sign language, that is accessible to the students. the findings reveal the challenges experienced in the delivery of language of curriculum. the challenge cuts even deeper in this case where both teachers and learners do not share a common language of communication. the teachers use isixhosa as their first language, while the learners use sign language as their first language. english is an additional language for both but is a legitimate language of instruction in south african education. failure to understand and use it means a general failure in education (kiramba 2018). this language mismatch leads to a failure in delivery of and receiving the educational content. the consequences that result from this is poor construction of careers stemming from displeasing educational outcomes. non-legitimisation of sign language as a language of instruction for d/deaf learners is excluding this category of learners from education. the south african department of basic education, in its endeavours to remove the linguistic marginalisation and to improve deaf education in south africa, has developed and published a policy named ‘the curriculum and assessment policy statements (caps) for south african sign language (sasl) grades r-12’. this policy aims to remove the barrier of language in their education as it proposes that d/deaf learners must be educated in sign language, which is applauded as a step in the right direction by the deaf education activists (department of education 2014). the policy introduces a new moment in time in the education encounters of d/deaf learners in south africa (department of basic education 2014). however, this policy implementation had not commenced in 2018 at the schools studied, which was four years after its development. the availability of the policy does not suffice, and it is its implementation that will make the difference in the inclusion of d/deaf learners. the south african department of education also made provisions following its education white paper 6 of 2001. the focus of this study was on inclusive education, the policy on screening, identification, assessment and support (sias 2014). this is a strategy that facilitates early identification and placement of students to include them in education. however, these strategies have not benefitted these learners as their implementation has not, and is still not, happening as it should. in recent developments, the south african parliament has approved the amending of its constitution to make south african sign language the 12th official language (maqhina 2021). this progress is widely welcomed by the deaf population, with the hope of improving the current status of linguistic exclusion in education and other social contexts in south africa. the policy frameworks for inclusive education are slowly being established in south africa, although in a context like that of the eastern cape inclusive education is still not fully met. the findings of a south african study conducted in motheo district, at a school for the deaf and blind, concurs with the findings of this study. it highlights the poor training of teachers in sasl, late language acquisition by deaf learners as well as a lack of physical resourcing of the schools. all of this contributed to barriers for learners in grade 8 (ngobeni 2017). a study on inclusive education for deaf learners in zimbabwe also concurs that full inclusion of deaf learners can only be experienced when they have access to their preferred language which can be visualised (musengi 2019). international studies in this area affirmed that language is a critical factor contributing to exclusion of deaf learners in education. inclusive education is echoed many times as a means of ensuring the education rights of d/deaf people, as outlined by the united nations convention on the rights of persons with disabilities (jokinen 2018). the concept of inclusive education may allow multiple meanings and may not be suitable for deaf children because they are still linguistically and socially excluded, and this does not assist their education (kusters et al. 2015). inclusive education for deaf people has been further defined as ensuring that education is provided in their first language using suitable modes and methods of communication for the individuals and spaces. these should maximise learning and general growth (jokinen 2018). for deaf children, full inclusion is equivalent to a fully supportive, manual communication and learner-oriented environment. this provides a rich environment for academic growth and the necessary development socially and emotionally. for d/deaf children to experience their full potential in life and education, they must have access to sign language as this enhances, rather than reduces, their abilities (moores 2018). however, this study reveals that such critical conditions of inclusion are not met. internationally, scholars in this field concur that fully accessible language experiences during early childhood are important to develop the potential of d/deaf children (hall et al. 2019). the theory of career construction brings the two conditions of individual constructivism and social constructionism into play. the findings reveal a lack in both components of career construction but seem to reveal more weakness in conditions for social constructionism, which has impacted negatively on individual constructivism. when we discussed the themes from the matrix of linguistic exclusions, it seems that contextual issues have a huge negative effect on the education and career construction of d/deaf learners in the eastern cape. the linguistic matters reflect contextual and individual issues, and the systemic issues are reflecting the contextual influences. the unavailability of facilities for sign language training for parents of deaf children, the lack of pre-schools for deaf children, the lack of training for teachers of deaf children, and the late identification and school placements for these children are all contributors to the social barriers to career construction. these are a reflection of risk factors to social constructionism. even if these learners would aspire to formal career trajectories, they will always be held back by social inadequacies from achieving these, until these gaps are attended to. the matrix of exclusions will always exist until social and political influencers are addressed. the linguistic issues and general educational development of learners are reflecting a risk to individual constructivism because the language to join learning experiences in and out of school settings is key to individual constructivism, and this linguistic gap contributes to the matrix of exclusions. the multiplicity of exclusions arises from these matters. if this study was carried out in a different context in the world, the results may be different. strengths and limitations the concept of linguistic exclusion for d/deaf learners may not be new in the literature; however, this study reveals that d/deaf learners from the eastern cape in south africa are trapped in a matrix of linguistic exclusions, which are mostly influenced by the context. the context was influenced by historical socio-political influences, resulting in deep inequalities it is this matrix of exclusions that contributes to undesired career construction outcomes. the multiple methods of data collection and variety of participants offer strong rigour and validity to this study. the limitation of the study is the case study design, which limits the generalisation of the findings to a context beyond the eastern cape of south africa. the reader should consider not generalising these results to the larger population but rather to consider how the findings could be transferable to other contexts. recommendations the education system currently, although it is internationally advocated to be inclusive, is greatly challenged by what occurs before d/deaf children come into the system’s custody. in order to curb this influence, the authors suggest that early life interventions be considered to improve the inclusion of all learners in education. interventions could include enforcing the implementation of an early hearing detection and intervention (ehdi) policy, which would lead to early identification and intervention in d/deaf children and families. this also includes advocating for early childhood development centres, which will provide d/deaf children and their families with the necessary early support, especially for language development and preparation for school. these interventions should lead to better educational outcomes, career construction and livelihoods for d/deaf communities. implementation of the sasl caps curriculum is also critical in this case. teacher development, especially for teachers who are placed in deaf schools, is also critical, they must be skilled to teach in sign languages. interventions need to consider the multiplicity of exclusions and the stages of life that they present at. a strategy has to be systemic and calls for a joint effort of the different sectors and government departments who are custodians of children at all stages of life through to adulthood. conclusion this study has discussed the cumulative effects of the matrix of linguistic exclusions. the linguistic exclusion for d/deaf children starts from early stages in life through to adulthood in multiple settings. as a result, in the eastern cape, the career construction is impeded by the combination of individual and social factors. acknowledgements the authors acknowledge the valuable contribution of all participants in this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions u.s.-z. was the main author who wrote the manuscript after conducting the study in fulfilment of her phd studies. this article is a publication from her thesis. h.k. was the main supervisor of the phd study who provided guidance, reviewing, materials and the graphic representation of contexts in the writing of this manuscript. m.m.s. was the co-supervisor of the phd study who provided guidance, reviewing and materials during the preparation of this manuscript. funding information this research work received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data are available; should it be required it will be provided through 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https://www.ukessays.com/essays/english-language/critical-period-for-language-acquisition-english-language-essay.php?vref=1. vaismoradi, m., jones, j., turunen, h. & snelgrove, s., 2016, ‘theme development in qualitative content analysis and thematic analysis’, journal of nursing education and practice 6(5), 100–110. https://doi.org/10.5430/jnep.v6n5p100 world federation of the deaf (wfd), 2018, 2015–2018 world federation of the deaf report, reuter, helsinki. footnotes 1. capital letter ‘d’ denotes a person with physical deafness and taking deafness as a cultural identity. a small letter ‘d’ denotes a person with physical deafness but not necessarily taking up deafness as their culture. 2. critical period of language development (robert 1997; salwa 2019; ukessays 2018). 3. constructivism is ‘an approach to learning that holds that people actively construct or make their own knowledge and that reality is determined by the experiences of the learner’ (mcleod 2019). 4. constructionism is more of an educational method which is based on the constructivist learning theory. levels here are shifting from the physical (constructionism) to the mental (constructivism), from theory to philosophy to method, from science to approach to practice (šverko & babarović 2019). article information authors: nondwe b. mlenzana1 jose m. frantz1 anthea j. rhoda1 arne h. eide2,3 affiliations: 1faculty of community and health sciences, university of the western cape, south africa2sintef technology and society, oslo, norway 3extraordinary professor, centre for rehabilitation studies, stellenbosch university, south africa correspondence to: nondwe mlenzana postal address: private bag x17, bellville 7530, south africa dates: received: 12 mar. 2012 accepted: 17 july 2013 published: 19 sept. 2013 how to cite this article: mlenzana, n.b., frantz, j.m., rhoda, a.j. & eide, a.h., 2013, ‘barriers to and facilitators of rehabilitation services for people with physical disabilities: a systematic review’, african journal of disability 2(1), art. #22, 6 pages. http://dx.doi.org/10.4102/ ajod.v2i1.22 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. barriers to and facilitators of rehabilitation services for people with physical disabilities: a systematic review in this review article... open access • abstract • introduction • methodology    • criteria for the review    • search strategy    • methods of review    • data extraction    • conceptual framework for analysis • results • discussion    • policies    • individual factors    • contextual factors    • implication for practice • limitations of the study • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: as health care practitioners, it is important to have an understanding of the common barriers to and facilitators of the rehabilitation services we provide. objectives: this article aimed to review the relevant literature regarding barriers to and facilitators of rehabilitation services for people with disabilities. method: articles for the period 1990–2010 using descriptors related to rehabilitation services, barriers, facilitators and the physically disabled population were retrieved for this review. results: a total of 19 article titles were identified from references of other articles but following application of the inclusion criteria selected for this review, only six articles were chosen. five of these articles were qualitative studies and one was a quantitative study. barriers and facilitators regarding rehabilitation services highlighted by participants in the studies included a perception that health professionals have a lack of understanding of rehabilitation for people with disabilities and there was a lack of information sharing from health professionals about the rehabilitation process. on the other hand some participants reported that health professionals demonstrated confidence in the disability and rehabilitation process during consultation and highlighted that their needs were met by the rehabilitation professionals. conclusion: even though there were few studies highlighting the barriers to and facilitators of rehabilitation services, they highlighted that there are gaps in the process of rehabilitation services provided. it would be advisable for health professionals to take cognisance of the issues highlighted in this study in order to make rehabilitation services more effective. introduction top ↑ according to the recently launched world report on disability (world health organization [who] 2011), 15% of the population globally presents with disabilities, with physical disability being most prevalent. the numbers of disabled people are increasing globally due to population growth, ageing, emergence of chronic diseases and medical advances that preserve and prolong life (who 2005). these trends create overwhelming demands for health and rehabilitation services, which are very far from being met, particularly in low-income countries (who 2005). disability is conceptualised as a complex process involving bodily functions, health, environment, activity limitations and restrictions in social participation (who 2001). optimal health care for people with physical disabilities is essential if their quality of life is to improve. understanding the needs of the physically disabled population may be a complex process as it involves understanding the person, the society in which he or she lives, and how these interact. various studies done in the period 1991–1997 state that people with disabilities as a group have challenges with regard to access to health services (davis & o’brien 1996; gold et al. 1997; weissman et al. 1991). in order to assist in improving the health outcomes of people with disabilities, it is essential to understand what the barriers to and facilitators of this population are as it relates to medical services that include rehabilitation. hence this article aimed to review the relevant literature regarding barriers and facilitators with regard to rehabilitation services for people with disabilities. there are different categories of people who are in need of rehabilitation services. in the rehabilitation centres in the western cape province, the following common conditions are seen: arthritis, spinal cord injury, head injury, neuromuscular disorders, stroke, fractures and amputations (metro district health services [mdhs] 2009). investing in health and rehabilitation services contributes not only to ensuring equality of opportunities and good quality of life for people with disabilities, but also to promoting social participation and valuable contribution to society. the united nations’ convention on the rights of persons with disabilities (united nations [un] 2006) underlines the rights of individuals with disabilities to play an active role in society, and that accessing rehabilitation services plays a key role in achieving this. more than a decade ago, keith (1998) highlighted that there is a need to understand the patient’s view on service delivery and explore whether rehabilitation services acknowledge patient perspectives and make relevant adjustments. this was supported by haynes, devereaux and guyatt (2002), who highlighted the role of patient preferences in disease management and considered it important that their views are heard. in a more recent study, van til et al. (2010) highlighted the need to understand the barriers that patients experience in the field of rehabilitation and how these can be overcome. the recommendation is to involve clients in decision making regarding their rehabilitation so that clients can be part of the process. they further recommended that studies need to be conducted to explore the barriers to rehabilitation and how to overcome them. a client-centred and holistic philosophy takes into account the goals and expectations of the client and should consider the individual’s broader life circumstances (cott 2004). cott (2004) suggested the following important components of client-centred rehabilitation: … individualization of programs to the needs of the client for a smooth transition between rehabilitation programs and the community; sharing of information and education that is appropriate, timely, and according to clients’ wishes; family and peer involvement in the rehabilitation process; coordination and continuity within and across sectors; and outcomes that are meaningful to the client. (p. 1418) this is also in line with the primary health care (phc) approach to health in south africa, which highlights that ‘specific rehabilitative services should include a basic assessment of people with disabilities, followed by an appropriate treatment programme, in consultation with the disabled person and his family’ (department of health 2000:43). rehabilitation services in phc settings are important for the welfare of patients with physical disabilities. over the last decade new rehabilitation evidence for specific interventions has been conceptualised but not practiced (wade & de jong 2000). studies that were chosen for this systematic review focused on clients with disabilities who received rehabilitation services at community level. phc rehabilitation professionals offer non-pharmacological interventions that have both a preventive and therapeutic role in the management of patients with physical disabilities. however, there is a need to identify explicit service-delivery models that operationalise a phc and rehabilitation approach to patients with physical disabilities. understanding the views of key stakeholders relating to current services will assist in identifying the gaps in the rehabilitation services being offered. during this literature review, no previously published systematic reviews on this specific topic could be found. hence, this study aims to explore literature on rehabilitation services for people with physical disabilities, in order to identify the barriers to and facilitators of accessing such services. methodology top ↑ a systematic approach to the review was adopted and it is reported in a narrative form. the protocol to develop a systematic review was done as a guideline before the study was conducted. this systematic review is one of the objectives of a bigger project (project number: 10/1/23). criteria for the review articles considered for inclusion could be either qualitative or quantitative studies and had to be published in english (as interpretation of the studies would be easier for researchers) during the period 1990–2010. to be included in the review the studies had to focus on people with physical disabilities that attended rehabilitation services and were exposed to rehabilitation services, either institution based or community based. search strategy the search strategy was implemented as follows. databases such as cinahl with full text, eric, academic search premier, medline, health resource-consumer edition, health source: nursing/academic edition, psycharticles, socindex with full text and ebscohost were searched for this review. the terms used to search for literature included rehabilitation service, facilitators and barriers, physically disabled, rehabilitation service providers and user satisfaction. search terms such as positives and negatives, people with disabilities, physical therapists, occupational therapists, doctors, nurses, social workers, and client satisfaction were used alternatively to search terms such as barriers and facilitators. references used in other studies were also perused to identify articles that did not emerge in the initial database search. studies were excluded if they did not specifically focus on rehabilitation services. six articles meeting the criteria were found through the identified databases, and based on their titles, 19 articles were identified from the reference lists of these articles. methods of review initially, the search was conducted by one researcher, and the abstracts and titles were screened by two reviewers. documents for the last two decades were reviewed by applying the pio method (moyer 2008) – where ‘p’ stands for population, ‘i’ stands for intervention of interest and ‘o’ stands for outcome – to the abstract. the pio method was used to select articles relevant for the study. the population included patients with physical disabilities, the intervention was access to rehabilitation services and the outcome focused on barriers or facilitators. this method assisted with identification of participants used in the studies, barriers to and facilitators of rehabilitation services and outcomes of these studies. if articles did not meet the criteria they were excluded from the study. full-text articles were obtained once they were included following the pio process. inclusion into the systematic review was also based on the methodological quality of the study.the reviewers used a critical review form (potvin 2007) for the quantitative studies (see table 1) and a critical appraisal skills programme (casp) form (see table 2) to assess the methodological quality of the qualitative studies (critical appraisal skills programme [casp] 2004). table 1: critical review form questions. table 2: critical appraisal skills programme (casp) review questions. only 6 out of the 25 article titles identified during the literature review met the inclusion criteria. the omitted articles (19) were mostly excluded as they did not address the aim of this review or did not include the identified population based on the casp form. a flowchart of the process followed to identify the articles used in this study is presented in figure 1. figure 1: search strategy followed for articles used in this study (moher et al. 2009). data extraction a self-developed data extraction form was used to extract the data from the studies, using criteria that were determined prior to the data extraction. the data extraction form was designed to extract information such as author, date of publication, country, population including sample size, gender, educational level and type of disability (see table 3). out of the 25 articles the reviewers identified 6 articles that met the criteria for the review. reviewers compared opinions and reached consensus on the final articles to be included. table 3: articles that were reviewed and met the criteria of the study. conceptual framework for analysis the world health organization’s (2001) international classification of functioning, disability, and health (icf) introduced a model that promotes an understanding of the complexity of health, and well-being practices are an indication of this. the icf provides a framework for viewing activity limitation and participation restrictions from three broad and different perspectives, which include physiologic, physical–environmental and psychosocial functions. when evaluating the current articles, the authors took the icf into consideration. the two main components of the icf are firstly the individual’s functioning and disability, and secondly contextual factors. the main aspect important for this review is activities and participation from an individual perspective. according to the icf, contextual factors include the environmental factors which comprise the physical, social and attitudinal environment in which people live and conduct their lives. personal factors include an individual’s life and living, and comprise features of the individual (gender, race, age, health conditions, fitness, lifestyle, coping styles, social background, education, profession etc.). the icf provided a useful framework and vocabulary for identifying the barriers and facilitators for this review. this framework was thus used to analyse the information reflected in the studies according to the various themes or categories that emerged. based on these themes linked to participants’ view of barriers and facilitators, the authors attempted to create a comprehensive picture. results top ↑ the findings of the review focused on the barriers and facilitators regarding rehabilitation services identified by physically disabled people. five of the six studies were from developed countries (australia, norway, canada and england) and one from a developing country (china). these studies are reported on individually based on the aim of the study, population and outcome of the study. contextual factors include environmental and personal factors. environmental factors are classified as the physical, social or attitudinal world and may be facilitating or hindering. personal factors may include socio-demographic data (age, education, profession, race and gender), co-morbidities, fitness, lifestyle, coping mechanisms and psychological status. the studies included focused on different aspects of personal factors. williams and bowie (1993) focused on the personal factors with regards to the disorder and thus the need for specific health professionals to focus on their disability. zongjie et al. (2007) focused on personal factors such as finances, years of disability and the patients understanding of rehabilitation services. on the other hand, vincent et al. (2007) focused on personal factors such as behaviour, language and sexual relations. in addition, with regard to the contextual factors, barriers to as well as facilitators of rehabilitation services are found in the physical, social and attitudinal environment in which people live and conduct their lives. mangset et al. (2008) used semi-structured interviews that aimed to explore patient satisfaction as a quality indicator in the area of elderly stroke patients’ rehabilitation. the population were clients who had a stroke and were between the ages of 60 and 87 years. in this study, participants identified the following facilitators related to the rehabilitation process: being treated with humanity by health professionals, being acknowledged as individuals, having their autonomy respected, having confidence and trust in health professionals, and exchange of information. williams and bowie (1993) used interviews in order to report on the quality of monitoring and management of the needs of severely physically disabled residents who were in regular contact with health professionals. the population were clients with severe physical disability between the ages of 16 and 64 years. based on this study’s findings, identified barriers to rehabilitation included that their needs were not met by health professionals in terms of activities of daily living, lack of communication, lack of resources in the areas of psychology, speech therapy and neuropsychology, lack of education given to the disabled, and lack of community awareness regarding disability. zongjie et al. (2007) used a series of comprehensive questionnaires to explore the requirements of disabled residents regarding rehabilitation services. the population were clients with disabilities between the ages of 30 and 70 years. the facilitators identified by the participants in this study included provision of information, doctors having good skills, easy access to doctors, good understanding of rehabilitation services, confidence in the value of rehabilitation services, and easily accessible rehabilitation services. vincent et al. (2007) used focus group discussions and explored partially met and unmet rehabilitation needs of older adults who had suffered a stroke and who lived in the community. the population were clients with stroke over the age of 65 years. these clients identified barriers to rehabilitation as being that rehabilitation was not personalised to the needs of the patient and there was not enough support for patients. kroll et al. (2006) used focus group discussions to explore barriers and strategies affecting the utilisation of primary preventive services for people with physical disabilities. the population were clients 18 years and older with a physically disabling condition. clients identified the following structural-environmental and procedural barriers: poor facilities, equipment and procedural accessibility issues, poor transportation, poor appointment scheduling, poor patient-provider communication, professional manner, disability-specific knowledge, personal motivation, cognitive issues, information and self-education, and lack of a personal doctor or usual source of care. lastly, crisp (2000) used interviews in order to examine the perceptions of people with disabilities concerning their interaction with health and rehabilitation professionals. the population were clients with disabilities between 24 and 56 years. barriers to rehabilitation included the following: ineffective health and rehabilitation professionals, family members as part of rehabilitation process were devaluing the clients, rehabilitation was associated with unwanted dependency and social discomfort, and dissatisfaction with the help received. facilitators included meaningful assistance from health and rehabilitation professionals, having therapeutic relationships with health and rehabilitation professionals, and being assertive and independent in rehabilitation. the services utilised by participants included rehabilitation medical services, psychological services and social services. rehabilitation education was provided as part of the rehabilitation process. discussion top ↑ the aim of the current study was to explore the literature on rehabilitation services for people with physical disabilities, in order to identify the barriers to and facilitators of accessing such services. within the context of the icf it is important to consider various factors that influence an individual’s reason to access health services, such as policies, individual and contextual factors. policies the phc approach includes five types of care, namely promotive, preventive, curative, rehabilitative and palliative. within this approach health care must be accessible, affordable, appropriate and accountable. five of the studies included in the review were from developed countries that adopt a health care system similar to the phc approach. table 4 highlights the various health care systems that are followed in different countries, including south africa. table 4: health care systems identified. individual factors it is evident from the studies that patients with varying conditions access rehabilitation services and that they have positive and negative experiences regarding the service. participants’ service-related expectations were the same; they both complimented and were dissatisfied with rehabilitation service received. although four of the six studies reported on the education level of participants, conclusions cannot be drawn to how this has influenced experience with rehabilitation services. literature indicates, however, that receiving health information from health professionals such as physicians is an important measure for increasing knowledge amongst users of the service as they are perceived to have clear knowledge about conditions (tian et al. 2011). in addition, paasche-orlow et al. (2005) highlighted that health literacy is associated with education, ethnicity and age. they further highlighted that there is a need to simplify health information provided to patients as part of health services. contextual factors one of the main outcomes of the review was that clients with physical disabilities identified health professionals’ attitude towards them as both a facilitator and a barrier. respect and empathy were highlighted as facilitators. on the other hand, people with disabilities were concerned about health professionals who focused on their disabilities and not their health. a client-centred approach is favoured in the literature, which emphasise that clients regard respect, autonomy and acknowledgement as individuals as important aspects (mangset et al. 2008). the need for client education was also identified as a barrier. this is supported by other researchers (harris, hayter & allender 2008) who suggested that communication and lack of information were barriers related to health care professionals when managing patients with chronic illnesses. in the review, communication was also experienced positively and negatively at the rehabilitation centres. some participants felt that health care professionals exchanged information during consultation whilst others felt that communication was lacking, especially regarding issues such as assistive devices and education about health conditions that people with disabilities presented with (vincent et al. 2007; williams & bowie 1993). in addition, participants were concerned about the lack of resources in the areas of psychology, speech therapy and neuropsychology when incorporated in rehabilitation services. this was seen to limit the holistic approach to the management of a person with a disability who is in need of one of these services. although certain types of services were found to be limited, participants in this review felt that rehabilitation services were easily accessible to them as they valued the existence of rehabilitation centres in their areas or community (zongjie et al. 2007). implication for practice it is evident from the review that there are mixed emotions about rehabilitation services. this review therefore highlights for rehabilitation practitioners the gaps that need to be addressed to make this service a comprehensive one. it is also evident from the review that contextual factors play a major role in understanding the impact of disability and the need for rehabilitation services. the factors highlighted in this review allow the consideration of patient-centred service provision models to be explored further. limitations of the study top ↑ this review has several limitations. because only english language articles were included, it is possible that this review is a not complete representation of the available evidence. in addition, the databases accessed was limited to those available at a single institution and thus could present a publication bias. as both qualitative and quantitative articles were included it was difficult to compare the results of the studies. acknowledgements top ↑ the authors hereby wish to acknowledge the financial contribution from the south africa netherlands research programme on alternatives in development (sanpad) towards the bigger phd study and the sanpad project group for their support. the views expressed by the authors are not necessarily the views of sanpad. competing interests the authors declare that they have no financial or personal relationship(s) which may have inappropriately influenced them in writing this article. authors’ contributions n.b.m. 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health organization (who), 2005, disability and rehabilitation who action plan 2006–2011, viewed 01 june 2011, from http://www.who.int/disabilities/publications/dar_action_plan_2006to2011.pdf world health organization (who), 2011, world disability report, who, geneva. xinming, l., 2005, healthcare in china: toward greater access efficiency and quality, ibm business consulting services, new york. zongjie, y., hong, d., zhongxin, x. & hui, x., 2007, ‘a research study into the requirements of disabled residents for rehabilitation services in beijing’, disability and rehabilitation 29(10), 825–833. http://dx.doi.org/10.1080/09638280600919657, pmid:17457741 abstract research methods and design findings discussion acknowledgements references about the author(s) anthony mugeere school of social sciences, makerere university, kampala, uganda tom shakespeare international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom mark t. carew international centre for evidence in disability, london school of hygiene and tropical medicine, london, united kingdom citation mugeere, a., shakespeare, t. & carew, m.t., 2024, ‘qualitative process evaluation of a disability-inclusive ultra-poor graduation programme in uganda’, african journal of disability 13(0), a1487. https://doi.org/10.4102/ajod.v13i0.1487 original research qualitative process evaluation of a disability-inclusive ultra-poor graduation programme in uganda anthony mugeere, tom shakespeare, mark t. carew received: 30 may 2024; accepted: 31 aug. 2024; published: 11 nov. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is a paucity of evidence regarding what works to help persons with disabilities escape the trap of poverty. to address extreme poverty among the general population, poverty graduation approaches have gained popularity. these programmes combine direct livelihood assistance (e.g. provision of assets) with wider support given to individuals (e.g. skill development). however, these interventions have rarely been adapted to be disability-inclusive. objectives: the present research is a qualitative process evaluation of a disability-inclusive poverty graduation intervention, implemented in uganda from 2020 to 2022. the study focusses on contextual influences on the intervention and mechanisms of impact according to the perspectives of implementers and intervention recipients, with a complementary analysis of structures and resources used to deliver the intervention derived from a desk-based review of programme reports. method: in all, 15 implementers and 23 persons with disabilities who received the intervention were interviewed using semi-structured interviews. interview data underwent framework analysis. results: national infection prevention measures and loss of intervention funding associated with coronavirus disease 2019 (covid-19) were identified as contextual influences on the intervention. respondents highlighted increases in social empowerment and positive changes in societal attitudes to disability as routes through which the intervention had a positive impact. however, instances of jealousy from community members not receiving the intervention were also an unintended consequence. conclusion: results are discussed in terms of practical implications for delivering similar interventions in other contexts. contribution: this study contributes new knowledge about the key factors that influenced the effectiveness of a disability-inclusive poverty graduation intervention. keywords: poverty; livelihoods; disability; intervention; inclusive; development. persons with disabilities are often described as the largest global minority group, comprising approximately 16% of the global population (world health organization 2022), and of whom an estimated 80% reside in lowand middle-income countries (world health organization 2011). there is strong evidence for the link between disability and increased poverty (banks, kuper & polack 2017a), whereby poverty contributes to incidences of disability (e.g. malnutrition) and disability pushes individuals into poverty through consequent barriers, such as difficulties obtaining employment (groce et al. 2011; mitra, posarac & vick 2013). a recent study conducted by pinilla-roncancio and alkire (2020) across five countries highlighted that not only were persons with disabilities and their families more likely to be facing severe multidimensional poverty, but that they were also experiencing greater levels of destitution in most of the countries studied. poverty alleviation is a key focus of the 2030 sustainable development goals (sdgs) which unlike the preceding millennium development goals (mdgs) include an explicit focus on persons with disabilities as a group likely to experience marginalisation, encapsulated by the overarching aim of the sdgs to ‘leave no-one behind’ (wei et al. 2023). despite this important objective, there has been markedly little attention to what may work to bring persons with disabilities and their families out of poverty, including how persons with disabilities can be effectively included in mainstream poverty alleviation programmes. a systematic review by hunt et al. (2022) identified a lack of evidence concerning disability-inclusive livelihoods interventions, including an absence of robust impact evaluations. as such, while the impetus to alleviate poverty among persons with disabilities and their families is clear, how best to do this remains muddied. to address extreme poverty among the general population, poverty graduation approaches have gained popularity. originally designed by the non-governmental organisation (ngo) brac (matin, rabbani & sulaiman 2008) the ‘ultra-poor graduation programme’ (upg) combines direct provision of livelihood support (e.g. asset transfers) for immediate needs with a wider programme of support and skill development designed to help the poorest households build productive and sustainable livelihoods, and permanently escape poverty. the results of six randomised trials with over 10 000 participants from ethiopia, ghana, honduras, india, pakistan and peru suggest that poverty graduation approaches are effective for the general population of the ultra-poor (banerjee et al. 2015). specifically, the interventions were found to produce significant and cost-effective impacts on the primary metric of household consumption, as well as household assets, food security and income, the majority of which persisted 1-year post-intervention delivery. gains were also shown for measures of wellbeing. taken together, the results highlight the promise of the poverty graduation approach for those living in extreme hardship, including persons with disabilities. however, to realise this promise, disability-inclusive poverty graduation programmes need to address the structural and multi-faceted barriers that persons with disabilities and their families face. for instance, many persons with disabilities face challenges in navigating their environments and require access to quality assistive devices or infrastructure adaptations before they can access services or engage in livelihood activities (van pletzen, kabaso & lorenzo 2021). moreover, poverty alleviation programmes must account for how access and impact may be influenced by other demographic characteristics persons with disabilities possess, such as gender and impairment type (banks et al. 2017b), as well as contextual influences specific to the intervention setting. previous impact evaluations of brac’s upg programme have not included persons with disabilities (kipchumba et al. 2024). thus, there persists a dearth of evidence about the extent to which the poverty graduation approach can be adapted to cater to the needs of persons with disabilities and their families. equally important to understanding how well the intervention worked is comprehending why it did so, including context specific influences on its impact. achieving this aim necessitates a process evaluation. the present study is part of a wider mixed methods process evaluation of the disability inclusive graduation programme (dig) implemented in uganda from december 2020 to june 2022. this process evaluation is taking place alongside a cluster randomised control trial (crct) (see kipchumba et al. 2024) as part of a comprehensive evaluation of dig carried out by the programme for evidence to inform disability action (penda) project and funded by the united kingdom foreign, commonwealth & development office. specifically, the present study is a qualitative process evaluation which explores contextual influences on intervention delivery and impact and mechanisms of impact according to the perspectives of implementers and intervention recipients. research methods and design study setting the dig programme was implemented within three districts located in northern uganda (gulu, nwoya and oyam) and one in western uganda (kiryandongo) by brac in partnership with humanity and inclusion (hi), a disability ngo, and the national union of women with disabilities of uganda (nuwodu) – an organisation of persons with disabilities. its main aim is poverty reduction and economic empowerment. within the dig programme, the unit of participation was the household. households were considered eligible if they met three of five criteria: (1) having a person with disability, (2) being a female-headed household or dependent on earnings from a female member of the household, (3) having children who are out of school, (4) poor housing conditions (floor, roof and wall), and/or (5) low productive asset endowment assessed through an identification survey (kipchumba et al. 2024). for the impact evaluation, clusters were formed comprising aggregates of households (range: 10–75 households) and random allocation undertaken. a total of 96 clusters were assigned to the intervention (n = 2898 households) and the remaining 89 (n = 2402 households) to the control arm (kipchumba et al. 2024). control households do not receive the dig programme, but have access to existing brac services. design and procedure intervention implementers and recipients were interviewed by a team of four academic researchers experienced in qualitative research data collection and analysis. the research team was based in uganda’s capital city (kampala) and conducted face-to-face, telephone or online interviews with respondents selected for the process evaluation in order to comply with national coronavirus disease 2019 (covid-19) standard operating procedures (sops). each interview lasted an average of an hour. all interviews were audio recorded and later transcribed by the research team. respondents a total of 38 semi-structured interviews were conducted, comprising 23 interviews with intervention recipients with disabilities and 15 informants based in uganda who had been involved in the delivery of the dig programme. the evaluation team decided that 38 was an appropriate sample size after realising that no new data was emerging from additional interviews with each group. eligible intervention recipient respondents were purposively selected to obtain a diverse sample based on their demographics (primarily age, gender and impairment type), obtained by the research team from lists provided by the implementation team. the key informants for this evaluation comprised individuals who were brac staff or partners at the time of the programme implementation, and who were purposively selected by the programme management based on their knowledge and participation in the implementation of its activities. these comprised 11 key informants from brac, one from hi and three from the nuwodu. table 1 describes the main characteristics of respondents. table 1: respondent characteristics. of the intervention recipients interviewed, 14 had varying forms of physical disabilities, 6 had visual impairments and 3 had hearing impairments. for hearing impaired participants, interviews were carried out by research assistants who were proficient in uganda sign language (usl) who recorded and later translated the data into english for analysis. information sheets were read aloud to participants who had visual disabilities or who were illiterate. in addition, the intervention recipients who could not speak and understand english were interviewed in luganda and luo, and the data translated and transcribed in english for analysis. data analysis data analysis of qualitative interviews used the framework analysis approach (faa) (ritchie et al. 2003). this entailed familiarisation with the data, theme identification and interpretation of the data. after transcribing the interviews, the transcripts were read and re-read before constructing themes based on the specific objectives of the process evaluation. by and large, the framework analysis enabled the creation of a new structure for the data (rather than the full original accounts given by the respondents) that the research team found quite helpful in summarising and/or reducing the data in a way that supported answering the objectives of the evaluation process. during the data analysis process, the study team selected and included specific quotes in the results that were illustrative of the identified themes (mugeere, oporia & kobusingye 2022). this analysis was complemented by a desk review of reports published on the dig intervention by the implementation team, in particular a detailed close-out report (brac 2022). these documents were used to gain insight into the structures and resources used to deliver the intervention. ethical considerations ethical approval was obtained from both the ethics committee of the london school of hygiene and tropical medicine (reference: 22619/rr/21198) and the mildmay uganda research ethics committee (reference: 0604–2020), with a research permit obtained from the uganda national council for science and technology (uncst) (reference: ss529es). all data were kept confidential. written and recorded informed consent was obtained from every participant prior to any interview. findings the study findings presented in this paper fall into three areas: structures and resources used to deliver the intervention, contextual factors that influenced the intervention and the mechanisms of impact through which the intervention operated. structures and resources used to deliver the intervention participants were identified via household surveys in the target four districts by project staff using a digital survey tool. a total of 2700 households were enrolled into the intervention, of whom 454 were households with persons with disabilities. among these households, a single individual within each household was designated as the main recipient of the training and assets (kipchumba et al. 2024). a person with a disability was designated as the main recipient of the training and assets in half of the households with members with disabilities. the key intervention areas for the programme comprised four pillars namely: livelihood promotion, financial inclusion, social protection and social empowerment. livelihood promotion under the dig programme, participants were able to choose a main and subsidiary asset from a range of prespecified options including different livestock (e.g. cows, goats, poultry), crops or trade support (specify). most households (n = 1727) selected goats as their primary asset and poultry as their subsidiary asset (n = 1330) (brac 2022). the initial value of the assets given to each household was approximately 300 usd. the main recipient of the project then received a 3-day classroom training from project staff on how to set up their enterprise. in the case where these main recipients were persons with disabilities, assets were delivered directly to participant households and not collected from village centres as was the case with other recipients. financial inclusion all project recipients with disabilities receive classroom trainings on financial literacy, aimed at building household capacity for financial management. village saving and loans association (vsla) groups were formed to support the empowerment of persons with disabilities involved in the project, supported by an initial 2-days training. a total of 138 vsla groups were formed, in which 209 persons with disabilities took leadership positions (brac 2022). the vsla helped group members to make informed investment decisions and also become more connected within their community. social protection all 2700 households received a monthly consumption stipend of approximately usd 18 in local currency, through a mobile money platform, and cash withdrawals facilitated by the vsla. emergency health subsidies were also offered to households on a needs basis, through community health promotion project staff present in vsla meetings. all persons with disabilities in the 454 households with such household members also received rehabilitation and psychosocial assessments from project rehabilitation staff (i.e., occupational therapists, physiotherapists and psychosocial workers). within these households, 214 persons were assessed as needing assistive devices. assistive device procurement was done with the support of humanity & inclusion and participants were given either pre-fabricated devices or those that were custom-made depending on their need. occupational therapists also carried out home and asset house (e.g. goat pen) assessments with participants with disabilities and worked with local builders to implement required adaptations (e.g. modifying doorways, building ramps). environmental adaptations were carried out in 164 households with household members with disabilities. additionally, 193 people with disability received rehabilitation support (e.g. treatment plan development), 154 received occupational therapy support (e.g. self-care and independent transfer training) and 156 received physiotherapy. furthermore, 212 persons with disability also received psychosocial support from project psychosocial workers on a quarterly basis. occupational therapy, physiotherapy and psychosocial support were generally provided on a quarterly basis (brac 2022). social empowerment the project also formed village poverty reduction committees (vprcs) as a way of linking participants to community initiatives aimed at improving their well-being. these vprcs comprised volunteers from the community, who as part of their roles engaged men and women from participating households to promote positive norms around disability inclusion and gender equality (brac 2022). a total of 108 vprcs were formed, in which 92 persons with disabilities were a committee member. the project also established peer support groups at village level, in which group members would discuss issues affecting persons with disabilities in the community (e.g. access to justice) and trained paralegals to support persons with disabilities to access justice, as this was deemed to be an obstacle by many ultra-poor people and persons with disabilities. life-skills training was also provided to all recipients of the dig programme, focussed on creating knowledge on health and social issues (e.g. gender empowerment, family planning, nutrition). activities under this pillar were supported by an earlier mapping of access barriers and support services within target districts. the context of the intervention this process evaluation identified two salient contextual factors that impacted implementation, both of which were precipitated by the covid-19 pandemic: national infection prevention and control measures and loss of programme funding. national infection prevention and control measures the implementation of dig was greatly affected by the outbreak of the covid-19 pandemic, which entailed national compliance with infection prevention and control sops. these brought to a halt intervention components that involved physical mobilisation and movement of programme staff to hold face-to-face meetings with intervention recipients. the pandemic also limited the movement of intervention recipients to attend meetings and other engagements at the programme headquarters. the situation was compounded by the lockdowns that were imposed at various stages of the pandemic as explained by one of the programme officers interviewed: ‘the covid-19 pandemic was such a challenge to us. when we were put under lock down, the key question was: how were we going to handle the situation? how would our intervention recipients fare under such situations since we couldn’t access all of them as and when we needed to do so. this necessitated thinking outside the box and we did exactly that.’ (brac programme officer, gulu district, northern uganda) although medical and other ‘essential’ workers were given special permission to travel and provide services during the lockdown, there were limitations on the number of individuals allowed to use personal cars at a particular time. accordingly, most cars could only carry half their capacity which affected the number of programme staff who provided services (e.g. physiotherapy) to the intervention recipients as explained by one of the project staff interviewed: ‘if the car was designed to carry eight people, this time we did half which somehow affected teamwork. instead of going as a bigger team, we found ourselves going lesser. these changes had to be made and they really affected us negatively.’ (brac programme officer, kampala metropolitan region) consequently, the covid-19 pandemic inevitably reduced the level of direct contact between the programme staff and the intervention recipients. given that some of the activities such as physiotherapy and other rehabilitation activities are essentially ‘hands on’, the pandemic literally reduced the number of hands provided by the programme staff. even when a few could use individual transport such as motorcycles and other means of transport to reach some programme intervention recipients in dire need of such services, there was often little time to provide the services. worse still, some programme staff were highly stigmatised by communities as they went about their daily duties – a point highlighted by another project staff member: ‘as we moved around the villages and trading centres, people were saying that we were the ones bringing covid-19 to them, so it was also a bit negative. against that background, there was nothing much we were able to change. it was a very difficult situation for us.’ (brac project officer, oyam district, northern uganda) although there was no radical overhaul of the programme design and implementation in response to covid-19, the team was forced to expand and modify the implementation approaches and strategies. for instance, radio shows were conducted containing messaging about disability inclusion in national covid-19 response as part of the overall strategy to scale up sensitisation campaigns which had been hitherto on a face-to-face basis – a view explained by one of the key informants interviewed: ‘during the covid-19 period, we were sensitizing the people about disability and inclusion in the task force when they are making decisions because you know people were getting special development programs from different partners and we were letting them know that persons with disabilities also should be considered. we were also advocating that at least on the task force there should be a person with disability to be able to speak from within. so, we emphasised that whenever they were programming, they had to understand that there is a person with disability in the community.’ (brac programme officer, kiryandongo district, western uganda) other issues emphasised during the radio talk shows included infection prevention and hygiene during which intervention recipients and other listeners were sensitised on why and how to wash their hands in their homes. for example, during these talk shows, listeners were asked to consider the needs of persons of short stature while setting up handwashing facilities in their homes. loss of foreign, commonwealth and development office funding given the challenging global operating environment precipitated by the covid-19 pandemic, the united kingdom foreign, commonwealth, & development office initiated funding cuts which affected the dig project, implemented as part of a broader cut to a raft of its programming. the unexpected loss of funding at the midway stage of the programme implementation dealt a major blow to the implementation of the programme activities. specifically, it affected the recruitment of rehabilitation personnel who were involved in the delivery of essential services such as physiotherapy and occupational therapy. this point was highlighted by one of the key informants: ‘at one point, we had to lay off physiotherapists yet we need their services. of course, we later managed to lobby for some extra funding from brac-uk and we then brought back some of these staff but that was after some time. this certainly affected the quality and timing of our services.’ (brac programme officer, kiryandongo district, western uganda) moreover, resourcing for other services was affected. under the social protection pillar, a modest stipend was provided for 6 months to enable the intervention recipients pay for the basic necessities such as food, medical care and where necessary, shelter. of great significance was the health subsidy provided under this pillar which was always provided based on the need and nature of healthcare required. this subsidy prioritised psychosocial support for project intervention recipients especially during the covid-19 pandemic lockdown period – as explained by one of the key informants: ‘during the covid-19 period, we had numerous issues to do with psychosocial and mental health issues. at some point, we realized that some intervention recipients were not able to access some drugs, so we had to lobby for them to continue receiving the stipend. unfortunately, we suffered a setback when fcdo withdrew some funds and we were not able to meet some of the needs that were emerging on daily basis. but we pushed on and managed without necessarily losing intervention recipients to the pandemic.’ (brac programme officer, nwoya district, northern uganda) intervention recipients of the dig intervention were also aware of the challenges posed to the programme by covid-19. some reported that the project close-out was unsatisfactory, entailing poor provision of information about when the project would end, which they saw as related to the covid-19 pandemic: ‘the end of the dig-brac programme was a typical case of disappearing without alerting us (the intervention recipients at all). even when rumours started circulating that they had gone, we failed to contact them. there was no news at all or any form of response. of course, there was a time during the covid-19 pandemic when word started circulating the programme would end but when some of us reached out to their staff for any information on this issue, they refused to answer until they disappeared.’ (female beneficiary living with a physical disability, gulu district, northern uganda) taken together, this shows how the dig intervention experienced two detrimental challenges associated with the covid-19 pandemic. the first was the public health and movement restrictions implemented by the ugandan government as a means of infection control, while the second was the loss of funding to the programme by its united kingdom donor, for which the covid-19 pandemic was the primary proximal cause. mechanisms of impact change in societal attitude towards persons with disabilities according to respondents, the implementation of the dig programme greatly contributed to a change in attitude towards persons with disabilities in the districts where its activities were carried out. specifically, respondents perceived the sensitisation campaigns against long-held stigma towards such individuals as playing a significant role in changing minds and shaping knowledge and attitudes which in their view proved to be a key turning point in the way society perceived persons with disabilities. furthermore, the empowerment and social protection measures designed and implemented under the project not only improved livelihoods, but also provided a firm basis for a new narrative on the way persons with disabilities can co-exist with the rest of society as explained by one of the key informants: ‘prior to the implementation of the dig programme, persons with disabilities were being looked at in the same category as minors who contributed nothing to their lives and society. even they (the pwds) also had a lot of self-stigma about themselves and were just there waiting for hand-outs. but when we went in with this programme, we witnessed an attitude change among the persons with disabilities and the communities where they reside. they became more involved in community activities, more active in their home activities and also took on the leadership roles at various levels. generally, i would say that the dig programme brought a positive attitude among persons with disabilities and changed lives.’ (brac programme officer, gulu district, northern uganda) intervention recipients also shared positive views of the sensitisation campaigns conducted as part of the dig intervention and the impact they had on stigma towards persons with disabilities: ‘before this programme began the sensitisation of our communities to end stigmatising us for being disabled, i used not to be happy at all. and because my son with a physical disability was then seen by some of my family members as a curse to them. they would always abuse me that i am a bad woman and i have produced a lame child. you see this tribe, the acholi people of northern uganda just talk even when you are hearing. they do not back-bite like the bantu who can try to hide. these ones just talk. someone comes home drunk and starts saying, “aaa … you also … you have no child, he is lame and is going to die anytime”. but when the dig programme awareness was intensified, the situation changed. they now look at my boy in a positive way and he feels loved too.’ (female beneficiary living with a hearing impairment and mother to a 7-year-old son with a physical impairment in oyam district, northern uganda) the dig programme efforts to end all forms of disability stigma also resulted into other consequences for intervention recipients such as building self-esteem as highlighted by a female respondent with a disability: ‘prior to the sensitisation campaign, someone would call you and when you don’t respond because you have a hearing problem, they start abusing you. they would ask whether you are deaf and even shout at you. i would really feel low and useless in the community. but the dig-brac programme staff showed love and respect. overall, my self-esteem is quite high now.’ (female beneficiary living with a hearing impairment, nwoya district, northern uganda) however, respondents highlighted that there were unintended attitudinal consequences of the dig intervention also. given the benefits provided by the programme to those who participated, a general feeling of jealousy emerged among some community members who envied what the persons with disabilities were either being given or had been empowered to do on their own. over time, there were increased incidences of theft and burglary targeting the programme intervention recipients motivated by such jealousy as explained by one of the intervention recipients during an interview: ‘at first, the community didn’t bother so much about us but they started feeling bad when we began to reap the benefits of the dig programme. they began targeting our properties and even lives because they felt that we were being pampered by brac. even someone being taken for orthopedic review was looked at in a different way. some community members felt that such persons are being favoured which led to thefts, house break-ins and personal attacks.’ (male intervention recipient with disabilities, kiryandongo district, western uganda) the dig programme implementation team responded to this issue by heightening their sensitisation campaigns to address the jealousy and stigmatisation issues. additionally, psychosocial support was also intensified for intervention recipients who needed such services. social empowerment respondents who received the dig intervention not only reported a change in societal attitudes towards disability, and associated improvements to self-esteem, but also positive changes in the way they interacted and engaged with the community. as one respondent explained: ‘the interventions helped us overcome poverty and graduate to the level of owning assets like cows, goats and pigs. we also started going to church because we had been socially empowered. we started mingling with the rest of the community members and accessing social services. we are also involved in politics and are demanding for our rights in society as granted by the national constitution and other laws.’ (female intervention recipient with disabilities, oyam district) some intervention recipients also linked the practical support and skills training they had received through dig to a broader mindset change about the future and the potential to be better off financially: ‘when the people from the dig-brac programme came to us, they told us many things which helped change my mindset and i started seeing things differently. because i was badly-off socially and financially at that time, they taught me many things such as, how to do business, how to take care of myself, how to eat well and how to do everything. and by the way it was not only me. it was for all programme intervention recipients – regardless of whether you have a disability or not. we all had a mindset change and i can say we visualize the future in a positive and completely different way!’ (female beneficiary living with a physical disability in kiryandongo district, western uganda) ‘during the financial management training, the dig-brac project staff sensitised us on the importance of forming groups so that we could start saving some money. they taught us how to keep records of savings groups and this changed our minds on the way we keep records and manage our finances.’ (male beneficiary living with visual impairment, kiryandongo district, western uganda) in many ways, the programme not only augmented the principle of social empowerment to its intervention recipients but also that of access to, ownership and management of assets in their lives. from the above-stated quotations, it is clearly evident that social empowerment did not only manifest itself in the self-perception that the intervention recipients felt that they could just do certain things such as participate in politics or attend church services (which meant a lot to some of them), but also made them realise that they can actually access, own and manage key assets in their lives such as animals and forms of wealth. this was further emphasised by another beneficiary who added: ‘during the mapping exercise, i remember people could say to me: i am a person with disability, that we would not benefit much from the programme. even after starting to implement the activities, many of us never believed that much will change. after all, we had seen many other initiatives in the past. but with time, we could see tangible benefits which we didn’t expect. a person with disabilities who, for instance, used to think that they cannot take care of a goat is now able to care of their own goats. here in gulu district, where a person was neglected and put in her own space, [she] was rehabilitated and is now able to sit in a wheelchair and get money by herself. she no longer has to depend on other people all the time for livelihoods … she can do all that on her own and also take care of her on assets.’ (female intervention recipient with disabilities, gulu district, western uganda) from the foregoing findings, it is clearly evident that there is an intersection between the socio-economic and political empowerment attained by the programme intervention recipients. the programme implementation team specifically focussed on providing tangible resources such as animals and wheelchairs to selected intervention recipients in order to empower them to participate in income generating activities. this form of empowerment contributed to helping to change mindsets, and respondents were able to participate in social activities in the church and political spheres which had not happened before the programme was implemented. overall, it is part of the indirect benefits narrative that emerged through this evaluation and forms part of its success story. discussion this qualitative process evaluation has summarised the structures and resources used to deliver the intervention and identified key contextual influences and mechanisms through which the intervention exerted its influence. specifically, the process evaluation identified the covid-19 pandemic and loss of fcdo funding as salient contextual factors. changes in societal attitudes and perceived increases in social empowerment were identified as important mechanisms of impact. this qualitative process evaluation complements existing quantitative studies of the dig programme. analysis of the dig programme’s impact has identified that the intervention significantly increased the economic wellbeing of households in the intervention group, relative to the control (kipchumba et al. forthcoming). moreover, a complementary quantitative process evaluation of the dig programme found that disability-targeted components of the intervention like physiotherapy and rehabilitation were less important to achieving the desired outcomes of the programme, such as economic wellbeing, relative to other intervention components (mapuwei et al. forthcoming). the present qualitative process evaluation complements these findings by highlighting the detrimental roles that covid-19-related factors played on intervention provision. it is notable that participants in our study drew a distinction between the impact of national infection prevention and control measures, such as restrictions on the movement of individuals, and the loss of fcdo funding on intervention activities. in particular, participants highlighted that these challenges disrupted the provision of face-to-face activities to intervention recipients, such as physiotherapy, providing a possible explanation as to why provision of disability-targeted activities like physiotherapy and rehabilitation had smaller effects relative to other dig components. while participants highlighted a detrimental impact of national infection prevention and control measures, such as how many staff could travel in a car together, the programme was still able to deliver intervention activities, albeit at a reduced rate. however, when funding was lost because of the impact of covid-19, the programme had to discontinue some activities completely such as physiotherapy and psychosocial support until an alternative source of funding was found. this highlights the importance of maintaining funding sources amid national challenges and crises such as covid-19. notwithstanding, it is encouraging that the dig programme had a positive impact on economic wellbeing, even amid the challenging circumstances of covid-19. this study identified a change in societal attitude towards persons with disabilities and social empowerment as important mechanisms through which the intervention exerted impact according to implementers and dig participants. this was consistent with the dig theory of change. respondents perceived that the sensitisation campaigns held under the dig programme brought about attitudinal change, both in terms of internal attitudes (i.e., self-stigma and mindset) and attitudes held about disability by the community, which they perceived as contributing to economic wellbeing. this may lead to a virtuous cycle, as participants are seen to do more and become more accepted as a result; alternatively, the attitudinal change may be short-lived and dissipate. quantitative analysis of the attitudinal impacts of the dig programme is forthcoming. in relation, some intervention recipients also highlighted unintended consequences related to attitudes, namely that feelings of jealousy were provoked among some community members who did not get the intervention, towards those that did. in some cases, this resulted in theft and personal attacks targeted towards the dig recipients. this highlights the need for future iterations of the dig programme to consider how to more effectively sensitise community members around intervention recipients, in order to ensure no beneficiary experiences a negative consequence. this qualitative process evaluation adds to existing knowledge about the dig intervention by shedding light on its contextual factors and mechanisms of impact. however, the study had some limitations. notably, in order to gain information about the implementation process (i.e., structures and resources), mechanisms of impact and contextual influences, the research has relied primarily upon information provided by desk reports published directly by the intervention implementers. while these data contain insights relevant to understanding the intervention, for example, in terms of how many participants received individual activities, these data are not independent observations of the intervention. monitoring and evaluation data also could not be obtained from implementers. thus, this research study has not attempted to draw independent evaluative conclusions about what participants received from the intervention (e.g. implementation fidelity and dose; see moore et al. 2015). instead, it describes what the dig programme itself has reported about implementation. moreover, although the research includes individuals with a diverse range of impairment types, the study did not include persons with psychiatric or psychosocial disabilities. nevertheless, our findings provide important new insights about how the dig programme worked and how the context it was implemented in influenced intervention delivery and impact. acknowledgements we thank elijah kipchumba, morgon banks and hannah kuper for their careful review of the manuscript prior to submission. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.m. collected the study data, performed analysis and wrote the initial draft. t.s. conceptualised the study and was responsible for funding acquisition. m.t.c. gave inputs into the original draft. all authors reviewed and edited the manuscript and approved the final version. funding information the study is funded by the united kingdom foreign, commonwealth and development office (fcdo) under the programme for evidence to inform disability action (penda) (code: po8073). data availability data are available in anonymised form on requests to the authors. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references banerjee, a., duflo, e., goldberg, n., karlan, d., osei, r., parienté, w. et al., 2015, ‘a multifaceted program causes lasting progress for the very poor: evidence from six countries’, science 348(6236), 1260799. https://doi.org/10.1126/science.1260799 banks, l.m., kuper, h. & polack, s., 2017a, ‘poverty and disability in low-and middle-income countries: a systematic review’, plos one 12(12), e0189996. 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bonell, c., hardeman, w. et al., 2015, ‘process evaluation of complex interventions: medical research council guidance’, bmj 350, h1258. https://doi.org/10.1136/bmj.h1258 mugeere, a.b., oporia, f. & kobusingye, o., 2022, ‘a qualitative study of the causes and circumstances of drowning in uganda’, bmc public health 22(1), 2024. https://doi.org/10.1186/s12889-022-14461-6 pinilla-roncancio, m. & alkire, s., 2021, ‘how poor are people with disabilities? evidence based on the global multidimensional poverty index’, journal of disability policy studies 31(4), 206–216. ritchie, j., lewis, j., nicholls, c.m. & ormston, r., 2003, qualitative research practice, sage, london. van pletzen, e., kabaso, b. & lorenzo, t., 2021, ‘community-based workers’ capacity to develop inclusive livelihoods for youth with disabilities in botswana’, african journal of disability 10, 851. https://doi.org/10.4102/ajod.v10i0.851 wei, y., zhong, f., song, x. & huang, c., 2023, ‘exploring the impact of poverty on the sustainable development goals: inhibiting synergies and magnifying trade-offs’, sustainable cities and society 89, 104367. https://doi.org/10.1016/j.scs.2022.104367 world health organization, 2011, world report on disability, world health organization, geneva. world health organization, 2022, global report on health equity for persons with disabilities, world health organization, geneva. introduction neoliberalism and the decay of intellectualism the university as a political space professor swartz’s moral leadership conclusion acknowledgements references about the author(s) ashraf kagee department of psychology, faculty of arts and social sciences, stellenbosch university, cape town, south africa mark tomlinson institute for life course health research, department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation kagee, a. & tomlinson, m., 2025, ‘what are universities for? professor leslie swartz’s career in the context of the neoliberal university’, african journal of disability 14(0), a1680. https://doi.org/10.4102/ajod.v14i0.1680 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper what are universities for? professor leslie swartz’s career in the context of the neoliberal university ashraf kagee, mark tomlinson received: 11 feb. 2025; accepted: 30 aug. 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). introduction in 2017, in a curious and somehow overdue announcement, the international monetary fund declared that neoliberalism does exist and then went even further to question its benefits (metcalf 2017). part of the reason for this announcement was that neoliberalism has become so pervasive and successful that it is seen as less of an ideology than a form of ‘natural law’ (monbiot & hutchinson 2024). in this article celebrating professor leslie swartz’s career, we comment on the neoliberal model of the university, a model that appears to have been embraced by the majority of tertiary institutions around the world over the past few decades. as politically and socially engaged teachers and scholars, we consider the illustrious career of professor leslie swartz in the context of concerns about sustainability, corporatism and the commodification of knowledge that characterise the neoliberal university. professor swartz and his contribution to society exemplify the challenges, pitfalls and victories characteristic of a scientist who is committed to engaged scholarship and social justice. we make a broader point about scholarship, censorship, the neoliberal university, and the small and large sacrifices that may have to be made to ‘stay on principle’. neoliberalism and the decay of intellectualism in 2005, the late anarchist dr david graeber was denied tenure at yale university with no reasons given (frank 2020). professor graeber was widely published, his application received enthusiastic support from peers in the form of letters of reference and he was well liked by students. it was likely that he was refused tenure because of his anarchist politics (frank 2020). in his eviscerating book on bureaucracy more broadly and academia in particular, bullshit jobs (graeber 2018), graeber described the ‘bullshitisation’ of academic life as the process by which academics have begun to spend more and more time in committees, doing performance appraisals, signing letters of reference and being managers of other academics – all tasks that they increasingly see as utterly pointless (graeber 2018). ‘managerial feudalism’ (graeber 2018) has become the order of the day with an ever-increasing number of administrative staff surrounding themselves with ‘flashy entourages’ (a deputy dean must, of course, have a personal assistant and a marketing consultant regardless of the nature of the actual work). at the time of this writing, a cursory search of professor swartz on scopus yielded 406 scientific articles with a hirsch index of 44. professor swartz’s work has been cited over 10 000 times, and his a rating with the south african national research foundation is testimony to his stature in his field, indicating that he is seen by his peers as a leading international scholar in the fields of psychology, psychiatry and disability studies. of course, professor swartz would probably be the first to point out that these metrics should be treated with caution as they are the embodiment of an audit culture of the neoliberal corporate university. terms such as throughput, output, publication units, intellectual capital, subsidy-generating articles, ratings, rankings, branding, third stream funding, cost recovery and the knowledge economy are commonly used among university managers. the emphasis on metrics forms part of a managerialist culture that has permeated public universities the world over, with university managers such as department heads, deans and vice-chancellors increasingly serving as chief executive officers in their environments rather than scholar leaders. the effect of an audit culture of this nature is to direct scholarship, including teaching and research, to activities that influence measurable performance outcomes. attention is thus diverted from the social value of principled scholarship, which may not as easily be operationalised and measurable (ball 2012). value-informed science and a commitment to improving the lives of people who have been oppressed and marginalised often defy the injunctions of neoliberalism and its emphasis on measurable outcomes in tertiary institutions. the work of professor swartz exemplifies this. the university as a political space recent international events have brought the tensions at neoliberal tertiary institutions into sharp focus. at universities, international as well as local, outrage at the genocide that israel has perpetrated on the people of gaza has taken the form of student demonstrations, sit-ins, marches, webinars, seminars and petitions. university managers have been largely silent, however, betraying their capitulation to the donor class. of course, there have been exceptions, with the university of western cape flying the palestinian flag and calling for an immediate ceasefire as well as full academic disengagement from israeli academic institutions. but such resolutions were quickly followed by reports of threats to withhold funds to universities in retaliation (naidu 2024). recently, reports from the university of cape town (uct) have suggested that as much as r750 million in funding was withdrawn following the decision by the uct senate to condemn the genocide in gaza (feinberg 2025). such blatant blackmail suggests that south african universities are increasingly facing fierce pressure from the donor classes to the extent that (following graeber) we may even see a move from a neoliberal to an imperial university (frank 2020). similarly, at professor swartz’s institution, stellenbosch university, there have been attempts to censor academic freedom so as not to risk alienating donors. in 2024, the dean of the faculty of medicine and health sciences attempted to stop a seminar on health care in gaza from taking place. students were instructed by the university management to remove the palestinian flag from the university library as it could risk offending others. stellenbosch university’s senate, the highest academic decision-making body at the institution, in 2024 voted against a motion calling for a ceasefire in gaza and an end to the genocide. these incidents are examples of political apathy, censorship and the so-called neutrality that have become characteristic of the neoliberal university. professor swartz’s leslie’s activist scholarship is a challenge to this disturbing trend. yet, the pressures on an academic such as professor swartz are broad ranging. as the editor of the south african journal of science (sajs), professor swartz is a de facto official of the academy of science of south africa (assaf). in october 2024, assaf issued a draft statement on ‘armed conflict’ to which it requested responses from its members. the draft statement contained language on the consequences of armed conflict, specifically humanitarian devastation, fatalities, injuries, damage to critical infrastructure and the environment, forced population movements and the spread of disease. however, the statement was silent on the matter of the gaza genocide, even as thousands of people in gaza were being annihilated at the very time that the statement was being released into the public domain. several assaf members protested at this omission and signed a petition objecting to it, calling on the organisation to clearly condemn genocide. however, most members, including all assaf office bearers as well as the sajs editor, were silent on the matter. of course, the requirement of an editor is, ostensibly, to invite all opinions on the statement, rather than to take a specific political stand. as such, there was probably no alternative to such a position if one is a journal editor, and the situation betrays an ostensibly unsolvable flaw in the reasoning behind the notion of academic freedom. we are confident that professor swartz would acknowledge and interrogate this and argue that such seemingly unsolvable positions are also fair game for scholarly inquiry and engagement. when representing an organisation such as assaf, liberal notions of the academy require office holders, including editors, to assume a neutral stance and allow debate to flow, without indicating their own position. yet, institutional neutrality and silence in the context of human rights violations and social injustice are also a political position. the assaf council ultimately decided to ‘avoid issuing any statement, as doing so could potentially cause division within the academy and could inadvertently draw assaf into a politically sensitive space’. notions such as ‘controversy’ and ‘political sensitivity’ are part of a discourse used by institutions to avoid taking a political stand against injustice as doing so may risk alienation of its donor base. it appears that this paradoxical stance is inescapable and represents the tension of being a scholar activist on the one hand and an editor and official of assaf on the other. for graeber, holding difficult positions, even radical ones, is perfectly acceptable if one is not prepared to act on them. writing about the genocide in gaza is acceptable. issuing a statement from the senate and the university leadership condemning genocidal israeli action is not. professor swartz’s moral leadership under professor swartz’s editorship, the scandinavian journal of disability research (sjdr), a leading journal in the field of disability studies, recently issued a call for article for a special collection on disability, political violence and genocide (scandanavian journal of disability research 2024). other organisations such as the american psychological association and the international society for traumatic stress studies have avoided discussions about the gaza genocide and have, in fact, steered clear of even using the term. rather than shrinking from controversy, professor swartz’s work has always been political and responsive to the human rights challenges facing the world, including south africa. his area of focus, namely disability studies, is highly relevant to the case of gaza where thousands of men, women and children are disabled (in addition to those being killed) because of injuries sustained in israeli attacks. cases of amputations without anaesthetic abound, in addition to spinal cord injury, traumatic brain injury, and visual and hearing impairments because of israel’s bombing campaign. professor swartz has addressed the moral, ethical and human rights challenges head on with his editorship of the sjdr and we laud him for this. such a position is an example of scholar activism that pushes against the current of political acquiescence, conformity to an unspoken status quo and silence in the face of gross human rights violations that have unfortunately become a feature of academic institutions. because of concerns about threats to their funding streams, academic institutions, scholarly organisations and journals have become compliant with the political agenda of the donor class that is located mainly in the rich world. there does not appear to be a way out of this conundrum. with steadily receding state funding over the past several years, universities have become reliant on external research grants, contracts with private sector firms and philanthropic donations for their continued sustainability. several universities in lowand middle-income (lmics) countries rely on funding from usaid, pepfar, the centers for disease control (cdc) and national institutes of health (nih) to conduct research and provide medical services to their populations. the trump administration’s intention to punish states that are not politically aligned with its agenda, including its uncritical funding of and support for israel’s aggression against the palestinian people, will have lasting consequences. we view the university, where professor swartz has spent most of his career, as an intrinsically controversial and uncomfortable political space. institutions of higher learning form part of the matrix that comprises the state, the economy, civil society and political culture. we may not be able to stop the slide of universities towards corporatism and an acceptance of market economics. however, we herald our colleague professor swartz’s steadfast refusal to succumb to the trappings of neoliberalism and the commodification of intellectual engagement. the university will endure, and we would like to imagine that tertiary institutions will not give up their role of conducting critical activist scholarship. rather than succumbing to an audit culture that includes ‘bullshit jobs’, we believe that universities should be responsive to their contexts and address the critical issues of our time. these critical issues include social inequality, health disparities, human rights violations, climate change and the benefits and hazards of artificial intelligence. conclusion as a mentor, respected colleague and friend, leslie has had a profound influence on us and our careers as scholars, teachers and global citizens. it is with wistful gratitude that we acknowledge his formal departure from the university. several cohorts of scholars have gained from professor swartz’s avuncular manner, his gregariousness and his clear-eyed dedication to social justice. we know he is not done yet, and we are confident that he will continue with his scholar activism in the coming years with the same resolve and determination. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.k. and m.t. contributed equally to this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated institution, funder, agency or publisher. the authors are responsible for this article’s results, findings and content. references ball, s.j., 2012, ‘performativity, commodification and commitment: an i-spy guide to the neoliberal university’, british journal of educational studies 60(1), 17–28. https://doi.org/10.1080/00071005.2011.650940 feinberg, t., 2025, uct ‘gave up hospital’ to pursue anti-israel agenda, jewish report, viewed 05 february 2025, from https://www.sajr.co.za/uct-gave-up-hospital-to-pursue-anti-israel-agenda/. frank, j., 2020, david graeber is gone: revisiting his wrongful termination from yale, viewed from https://www.counterpunch.org/2020/09/04/david-graeber-is-gone-revisiting-his-wrongful-termination-from-yale/. graeber, d., 2018, bullshit jobs: a theory, simon & schuster, new york. metcalf, s., 2017, ‘neoliberalism: the idea that swallowed the world’, guardian. monbiot, g. & hutchinson, p., 2024, the invisible doctrine: the secret history of neoliberalism, allen lane, london. naidu, e., 2024, ‘south african research funds “at risk” over gaza stance’, mail & guardian. scandanavian journal of disability research, 2024, scandanavian journal of disability research: call for papers: special collection on disability, political violence and genocide, viewed 05 february 2025, from https://sjdr.se/announcements#call-for-papers:-special-collection-on-disability,-political-violence-and-genocide. abstract introduction materials and methods results discussion conclusion acknowledgements references about the author(s) elijah musenyente department of community and disability studies, faculty of special needs and rehabilitation, kyambogo university, kampala, uganda marie l. han department of pedagogy, faculty of human sciences, university of potsdam, potsdam, germany michel knigge department of rehabilitation sciences, humboldt-universitaet zu berlin, berlin, germany citation musenyente, e., han, m.l. & knigge, m., 2022, ‘implementation of un convention on the rights of persons with disabilities in public and private schools in three districts of uganda’, african journal of disability 11(0), a908. https://doi.org/10.4102/ajod.v11i0.908 original research implementation of un convention on the rights of persons with disabilities in public and private schools in three districts of uganda elijah musenyente, marie l. han, michel knigge received: 11 june 2021; accepted: 11 may 2022; published: 27 oct. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the study was grounded in the recent developments of implementing the united nations convention on the right of persons with disabilities (uncrpd) in schools in uganda, leading to a renewed interest in the questionings about inclusive education. objectives: the inclusive approach was evaluated in terms of: (1) how public or private schools in uganda understand inclusive education; (2) how schools implement inclusive education under the influence of the un convention; and (3) what determines the course of action and school routine of private and state schools. methods: this exploratory qualitative research included interviews with six schools purposively selected in mukono, wakiso and kampala districts of central uganda. the selected schools comprised three private and three state schools (i.e. representing primary and secondary schools and a vocational training institute). results: the research demonstrated that ‘inclusive education practice’ that was upheld by all the schools, was ironically stained with exclusion, for example, by non-admission of students with visual and hearing impairment, inaccessible physical environment, inadequate funding and separation of students according to abilities. however, whilst all schools followed the regular curriculum, some schools developed their own ways of teaching learners with diverse learning needs. conclusion: some schools in uganda have developed meaningful approaches of including students with disabilities but there are still many challenges for many. enforcing uganda’s disability policies adapted from the crpds could enable learners with disabilities to enjoy their legal rights. contribution: since the intention of inclusion of students with disabilities stands in contrast to the reality of practice found in many schools, there seems to be a need to carry out regular assessments and measures of support for a sustainable inclusive school development. keywords: people with disabilities; un convention; inclusive education; disability rights; uganda. introduction uganda’s ratification of the united nations convention on the rights of persons with disabilities (uncrpd) on 25 september 2008 (uncrpd 2010; united nations 2016) ‘concluding observations on the initial report of uganda’ provided an approach and direction of inclusive education within the education system. the system considers the general education of students with disabilities, which enable or aggravate good-quality inclusive education. article 24 (2)-education, of the uncrpd (2006) provides that: persons with disabilities are not excluded from the general education system on the basis of disability, … free and compulsory primary education, or secondary education, on the basis of disability; … can access … on an equal basis with others in the communities in which they live; … receive the support required, within the general education system, to facilitate their effective education. (p. 17) many african countries and other states around the world appended their signatures on the uncrpd and have been debating on the notion of ‘inclusive education’ in an african context and different ideas have come up (mahlo 2017). this new concept originated from failure by community to recognise individual difference as an important factor in the education and schooling of learners with severe learning disabilities or special education needs who sometimes require individualised assistance. by signing the uncrpd, uganda consented to fully support those members of society, who have any kind of disability and agreed to stand up for their rights. the convention is geared towards all areas of life and encourages the relevant group of persons to be able to fully take part in it, whereby this study specifically concentrated on the right to education for children and young adults with special needs. primary education in all public schools in uganda is free of any sort of tuition fees since 1997, which expanded towards free secondary education 10 years later (mwesigwa 2015). every child in the state of uganda therefore has the right to education and in conjunction with the uncrpd, regardless of different health-related backgrounds, should be able to get support in attending school at any time. however, a clear distinction between private and public schools in uganda has to be made. about one-third of all primary schools and two thirds of all secondary schools belong to the private sector, which means that they require some sort of financial contribution from the students’ families (initiative for social and economic rights [iser] 2015). as private institutions cover such a large portion of the educational system in uganda, they play a main role in practicing inclusive education, operating on different levels when compared with the financial foundations of state schools. the ministry of education and sports (moes) within the ugandan government developed both a curriculum, which was released in 2007 and is still relevant, as well as the most recent education and sports sector strategic plan, which covers the time period 2017–2020 (moes 2017). both the curriculum and the sector strategic plan determine ways of operations and standards for schools in uganda to follow and accomplish. these documents are profoundly following the models of the un convention, setting the bars high for high-quality and inclusive education. education system the ugandan education system follows the british academic model. a school year is divided into three terms of three months with a holiday break of a couple of weeks in between (moes 2021). schooling starts on the pre-school level, in nursery. attending nursery from age three to six is much more popular in bigger cities than in villages. here, the educational path mostly starts with primary school (hands 4 uganda 2018). primary school begins about the age of six and continues for seven years, until pupils reach the age of around 13. the first major national exam – the primary leaving examination (ple) – is taken at the end of primary 7. the subjects english, mathematics, social studies and science need to be passed in order to attend secondary education (world education services [wes] 2020). after passing the ple, the decision is made of either attending secondary school or some kind of vocational education usually offered in the form of craft courses in technical schools (kim 2021). secondary schools, on the other hand, continue for six years and are attended by students from the age of about 13 to 19 years. the first stage is called the o-level period, which lasts for four years, from senior 1 to senior 4 and is completed by the second major national exam, the uganda certificate of education (uce) or simply the o-level examinations. by passing the uce, the students obtain the chance to attend the second stage of secondary school, called a-level period, for two years from senior 5 to senior 6. passing the final exam at the end of senior 6, the so-called a-levels or uganda advanced certificate of education (uace), qualifies the students to attend university (wes 2020). the african union (2014) advised that high tuition fees prevented some children from being sent to school by their parents. accordingly, in 1993, the ugandan government decided to liberalise the education sector, and although primary education in public schools is free of tuition many ugandan families, mostly in the rural areas, still cannot afford sending their child to school. they do not have enough money to pay for the school materials, such as pens and books, the uniform or even school lunches, which they generally have to cater for themselves (mwesigwa 2015). whilst inclusive education is allocated a small budget in many african countries, zubairi and rose (2019) argued that sub-saharan africa government’s expenditure on secondary and primary education is too little compared with anywhere else on the globe. for example, public primary and secondary schools in uganda claim not being able to provide an adequate school environment to cater for all children because of lack of adequate funding, the private schools keep increasing the tuition fees in order to improve the quality of education (mutebe 2017). the for-profit private schools, with medium to high tuition claims, are fully financed from private sources most of the time, whereas the non-profit private schools often depend on the tuition fees to offer an appropriate quality of education (iser 2015). ugandan special needs and inclusive education department the ugandan special needs and inclusive education department forms part of the moes. it is responsible for giving out technical and practical guidelines to schools and other educational establishments to follow the inclusive education standards. by signing the salamanca statement and framework for action on special needs education in 1994, uganda agreed to focus on the inclusion guidelines. under those guidelines, the department developed operating principles and objectives in order to meet the set standards thus: ‘it is all about changing attitudes, behavior, teaching methods, curriculum, environment and allocation of human, material and financial resources to meet the educational needs of all learners’ (moes 2018). statement of the problem although there has been some progress made across african countries (including uganda), inclusive education has not yet been achieved because of several challenges that include the allocation of inadequate funds for education (chitiyo & dzenga 2021:61). when uganda signed the uncrpd in 2008, it consented to fully support those members of society, who have any kind of disability and agreed to stand up for their rights. unfortunately, the concrete strategies that were intended to include a wide variety of students by focusing on their specific individual needs under different school environments actually stand in high contrast to the reality. on average only one out of four students is able to complete all levels of primary school, which results into a very high primary school dropout rate (united nations development programme 2016). besides the fact that the curriculum and the un convention both became effective over a decade ago, the present state of ugandan schools is fragile when looking at the number of students who are not able to attend or complete primary education. that leads to the conclusion that there is some sort of barrier between the actual school practice and the governmental standards and directions. despite the matter being of such high importance, actuality and affecting a huge part of the overall population, there is a significant lack of research on the topic of the establishment of inclusive education in uganda. thus, the article seeks to address those issues. aim the study explored the implementation of inclusive education by private and state schools in uganda under the influence of the uncrpd and provided recommendations based on informed research. research questions how do public and private schools in the districts of mukono, wakiso and kampala understand inclusive schools and classrooms? how do ugandan private and state schools in the districts of mukono, wakiso and kampala implement high-quality inclusive education amongst a diversity of learners as per the curriculum and strategic plan under the influence of the un convention? what determines the course of action and school-routines of private and state schools in the districts of mukono, wakiso and kampala? materials and methods area description uganda is a presidential republic located in east africa, on the edge of the equator. bordered by the democratic republic of congo, kenya, rwanda, sudan and tanzania, uganda accommodates 39 million people on 241 038 km2 (world atlas 2019). kampala lies in central uganda and is the largest and capital city of uganda with an estimated population of 1 680 800 people as of 31 july 2019; its metropolitan area include wakiso district, mukono district, mpigi district, buikwe district and luweero district has an estimated population of 6 709 900 people in 2019 in an area of 8451.9 km2 (3263.3 square miles [sq ml]) (uganda bureau of statistics 2019). participants all the six schools were located around the districts of kampala, mukono and wakiso districts in central uganda, thus making them comparable. however, the limited sample of six interviews with principals and teachers was not considered to be representative of the whole country. the duration of the interviews with principals and teachers varied from 45 min to just over an hour. in order to put the conversations onto paper afterwards, all of the principals and teachers interviewed agreed on being voice-recorded. often, more than one person from each of the school was part of the discussion, giving rise to the possibility to capture multiple points of view. part of visiting the six schools was also getting a closer look at the circumstances and viewing the facility, to put things into perspective and understanding the circumstances students and teachers were faced with in their day-to-day school life. experiencing those vocational contexts made it possible to contrast the different school standards and provided space to speculate about the management strategies and choices. every school was assigned an individual code for retaining anonymity whereby the first letter within the code referred to being either a private (p) or a state institution (s), whereas the second two letter correlated with the school type (ps for primary school, hs for high school and voc for vocational training) as shown in table 1. table 1: a description of schools that participated in the study. methods this was an exploratory qualitative study, which was grounded in the views and experiences of principals and teachers of both private and public schools in the area of kampala, mukono and wakiso districts in central uganda from march 2017 to february 2018. a purposive sampling technique was used for selecting the sample of principals and teachers of six schools, which claimed to practice inclusiveness, that is, three private schools and three public schools. the purposeful sampling technique was both cost-effective and time saving and was basically chosen by the investigators basing on prior knowledge and mindful of the purpose of the study of inclusive education by key players (i.e. principals and teachers). data collection data were collected using semi-structured interviews. the use of open-ended questions was of particular importance because the participants got the feeling of being expected to answer in a certain way because of one’s own values. this method enabled an honest and open exchange, making it possible to work out important perspectives for the research (busetto, wick & gumbinger 2020). for the textualisation of the spoken information and communication later on, the participants were informed in advance about recording the process. content analysis was used to analyse data. data were subdivided into five steps starting with the development of analysis categories based on the collected material. the central topics within the interviews were taken into account whilst focusing on the concrete statements of the participants. as a next step, all significant categories of the various interviews were compiled and where needed, augmented. this step was followed by the coding of the material. each valid statement was assigned to a specific analysis category, which reduced the amount of information from all the interviews and emphasised the essential parts (tenny et al. 2021). ethical considerations the study was reviewed for ethics and scientific merit and received approval by an accredited ethics committee in uganda, the acquired immunodeficiency syndrome (aids) support organisation research and ethics committee (ref: protocol: # tasorec/109/2020-ug-rec-009). informed consent was obtained from the participants before conducting the interviews. results how public and private schools understood inclusive schools and classrooms this study explored the teachers’ understanding and knowledge concerning what is involved in inclusive education, for example, their attitudes regarding inclusive education; skills and capacity in integrating inclusive practices; the collaboration with parents who are better well versed with the needs of their children, provision of accessible physical environment and the funding. the results were as follows: admission and accommodation of diversity (every child) the way different schools in the districts of mukono, wakiso and kampala interpreted and practiced the notion of inclusion and inclusive education strongly varied according to their school concept and the students attending the school. some of the institutions specialised according to their individual school description in admitting and educating students with special needs. other schools were more challenged and struggled with accommodating every child, as they did not have the relevant knowledge and resources. the admission process was one of the fundamental parts of inclusiveness and usually started with the assessment of the students in state schools as follows: ‘within the school level here … have a board which does the assessment. we assess and determine the problem of the learner. so when he is in primary seven that’s when we inform the national examinations board in writing and they send someone who can assess.’ (sps-sen-cf, h, f) however, the assessment of students in vocational training institutes was slightly different as it involved a medical doctor from a public hospital as indicated: ‘because with certain disabilities, you could not be allowed to do every course you want. so require them assessed in a government hospital, also to let us know any other kind of illnesses that may need special attention, when here.’ (s-voc, m, f) whilst three of the six schools in the study embraced inclusiveness, they still institutionalised students with disabilities although they did not support the idea thus: ‘if we are institutionalising them, then we are openly coming out … i don’t think, it is a good thing.’ (s-voc, m, f) not accommodating students with severe visual impairments is what all of the schools had in common because some students with disabilities were sent to attend special schools where they received the attention and support needed to participate in education. all the schools in the study did not have the resources to reformat the school materials or to hire special teachers to provide for blind students and therefore could not admit students with visual impairment thus: ‘they are those who cannot see, the blind ones, right now we don’t admit them. there is a school somewhere [at salama school for the blind] which accommodates all the blind. so the rest we can accommodate.’ (sps-sen-cf, h, f) ‘if someone wants to take a course and he’s blind, we have to turn him down.’ (s-voc, m, f) when it came to students with hearing impairments, it often depended on whether they were able to use the appliances, which allowed them to hear. some of the interviewed schools admitted students with hearing impairments who were hard of hearing and made the effort to cater for them especially by allowing them to sit near the teacher and using assistive hearing devices. beyond that, students with hearing impairments were referred to the school for the deaf where they used sign language thus: ‘we admit the children … physical and learning difficulties. when a deaf child comes, we do not admit him or her. instead, we refer him or her to other schools.’ (sps-sen, h, f) students with hearing and visual impairment were excluded and treated in almost similar manner because they attended special schools where separate educating methods and tools were used and most of the schools lacked them: ‘no, we don’t have the deaf and we don’t have the blind.’ (sps-sen, h, f) all of the schools, which claimed to be inclusive including the vocational rehabilitation center, admitted students with intellectual impairments and learning difficulties, including dyslexia, down syndrome, autism, etc. some students had a lot of learning problems but in different levels. some could learn but at a slow pace thus: ‘like we have mild, severe and profound.’ (sps-sen, h, f) students with learning difficulties got admitted as they were able to learn with other students although they needed more assistance. however, other state schools were very strict during the assessment and admitting of students as follows: ‘they rank us highly, we have to perform better than the others in the area. so you have to sit for an interview and if you perform better, you can go to p3, for example. but if you fail, we place you where you are fitting.’ (sps, h, f) where the environment was well adjusted, all the schools accommodated students with any kind of physical disabilities. they were able to fully partake in everyday school life on an intellectual level although some of them lacked assistive devices and experienced inaccessible physical environment such as stepped entrances and inaccessible toilets. however, one special school for students with physical disabilities had an accessible physical environment as reported: ‘for example those ones in wheelchairs, us, we do accommodate them.’ (sps-sen-cf, h, f) schools were faced with a rethink when transforming into an inclusive and open-minded institution, as they needed to get more considerate and took several more aspects into account in order to provide for the wide variety of students as follows: ‘inclusion, so we tried, but i don’t know if i’d call it luck, but we don’t have many children with special needs.’ (pps, d, m) barrier-free physical accessible school environment creating an inclusive and safe accessible school environment involves a barrier-free physical infrastructure. students with physical impairments, who use wheelchair or crutches for mobility were taken into consideration to show some inclusion, for example, when constructing the buildings as they needed to be able to move freely and independently. access ramps were constructed in the two schools, which were founded on the grounds of disability: ‘we even have toilet facilities for people, who are disabled.’ (shs, h, m) however, most state schools had a few ramp access on recently constructed buildings whilst toilets had stepped access and narrow entrances. although the highest number of students at the vocational training school had physical disabilities, the school’s roads and paths were inaccessible as per the following exclamation: ‘when you talk about accessibility i want to get off my chair and hide under the table. seriously, because we preach about it, we talk about it everywhere, and we’re the ones, who are supposed to have out places accessible for people with disabilities. but as you were driving through our road, you saw it!’ (s-voc: 158–163) attitude in addition to struggling with prejudices and other difficulties in their everyday school life students with disabilities experienced pressure to achieve the set goals. this was even more conflicting when repeating a class was weighed down with negative connotations instead of seeing it as a chance to improve the knowledge or skills in certain fields as expressed here: ‘when i have a child who has to repeat primary 5 three times and cannot write his name, count up to 100, add up to 20 … this child cannot do more than primary 5, just primary 1 to 4.’ (sps-sen-cf, h, f) assistive devices the schools that were founded on the basis of disability tried to solicit for assistive devices for their students with special needs as follows: ‘most times we collaborate with partners … orthopedic workshops and we get some devices … wheelchairs.’ (s-voc, m, f) collaboration with parents collaboration between teachers and parents permitted the sharing of experiences for the sake of understanding the student’s needs, well-being and learning most especially, learners with special educational needs. the schools used effective and respectful communication to parents, putting in mind the language, cultural background and socioeconomic status of the parents. collaboration was in the form of monitoring the educational progress and joint decision on the class level and vocational programme for the students. this was evident from the statement: ‘you talk to the parents … about a, b, c, d and so on and what the problem is. you try several approaches to see, what the problem is.’ (sps-sen-cf, h, f) funding for schools in each school, the teaching and learning environment strongly depended on the source and the management of the given financial resources. except for the private institutions, most of the schools in the study were given specific funding by the government. this amount was intended to pay a set and standardised number of teachers and the basic learning materials. this funding was usually based on the number of students in the school. however, government funding was inadequate to cater for the needs of state schools as indicated here: ‘this school needs a lot of people to work here. we need therapists, we need social workers and who is willing to pay them? the government is not financing these people i am talking about … we are 42 staff members, and the government is paying only 13 teachers.’ (sps-sen, h, f) there were two ways of seeking funding for schools as guided by the public authority or the private sector. primary education in all public schools in uganda is free of any sort of tuition fees, and therefore, state schools had to rely on the approval of financial funds by the government, which was also inadequate as follows: ‘state schools have … challenges, because they are told not to charge the students any money. and yet the money, they get from the government is very little. for every student in primary school, the government pays … less than one dollar per term.’ (pps, d, m) however, all the state schools in the study asked for some sort of contribution from parents to pay for their children’s lunch. private schools required parents or sponsors of the students to contribute to the financial means by paying a certain amount of tuition. these private schools were struggling to meet their operation expenses such as payment of teachers’ salaries, water and electricity bills, teaching and learning materials thus: ‘we have a problem with our budget. to pay the teachers and so on, we struggle … the teachers are getting a little bit less money and everybody gets a little bit less money.’ (pps, d, m) implementation of high-quality inclusive education amongst a diversity of learners as per the curriculum this study explored the participation of learners in all school activities, barriers and problems they faced that impacted their access to the curriculum most especially learners with specific learning difficulties. the results were as follows: diversity of learners some of the schools were using all the available resources to give the students the possibility to learn. they also accommodated a diversity of learners as reported: ‘it is a major challenge to other schools, some other schools can’t accommodate those learners, especially, let’s say, those who may need some extra care.’ (sps-sen-cf, h, f) teaching methods and learning materials most of the regular schools did not have the resources to reformat the school materials or to hire special teachers to provide for blind students. in some state schools, they grouped students according to their features so that the ones with disabilities were separated into a different setting thus: ‘we don’t combine them, they study at different hours … because we don’t want to interrupt the others.’ (s-voc, m, f) the belief behind this was that the students with disabilities were more easily distracted by outside influences and needed different learning methods. some students needed more one-on-one attention in order to understand particular topics. to facilitate curriculum access by learners with diverse learning needs, a variety of classroom strategies were used through, modification, adaptations or differentiations. curriculum adaptation and modification all the interviewed primary and high schools followed the regular curriculum and therefore developed their very own ways of teaching and trying to reach certain goals within the national standards. they had to incorporate the factor of inclusive education in their concept of teaching all kinds of students the same set of information and skills as required by the government as indicated: ‘we follow the primary school curricula. but because it is a special school, we have our special ways we do prepare the children up to the level, doing the national primary examination.’ (sps-sen, h, f) those schools that really focused on integrating students with special needs into their classrooms and spreading the message of diversity within their reach seemed to struggle to meet the intended standards in the traditional way. for that reason, most of them had worked out special interventions, which focused on supporting the children, especially in the primary school stage as follows: ‘however much we are following the normal curricula for primary schools … we were allowed by the ministry of education to develop a curricula by ourselves, which will be used alone with the national curricula to help our learners, because of their special needs.’ (sps-sen, h, f) two of the interviewed institution (i.e. a primary school and the centre for vocational training) both mentioned the use of the alternative curriculum. the students in the primary school who were intellectually not capable of participating in all the aspects of the standard curriculum like the rest of the students, the schools had to change to a vocational curriculum, which focused more on practical skills, for example, tailoring as indicated: ‘the bigger percentage of them, after living here … make a living, they get something to do … the biggest problem … most people don’t want to employ them … start their own business. there are so many stereotypes attached to persons with disabilities. we also got a few disappointments … your student begging for money … i met two or three students on the streets. “we don’t give them start up kits, …”’ (s-voc, m, f) the vocational training centre did not go through the formal education system but fundamentally focused on teaching hands-on skills to enable young adults with special needs to get jobs and live independent lives thus: ‘we basically give them practical skills … the capacity to stand on their own after failing to go through the formal system.’ (s-voc, m, f) similarly: ‘those who cannot joint the secondary school, i think we have an option. for example, there is a vocation section.’ (sps-sen, h, f) reaching goals basically, all the schools in uganda were expected to follow the thematic curriculum; therefore, teachers were advised to cover certain subjects and learning fields with their students within a set amount of time as required by the national curricula development centre. however, the challenge with the thematic curriculum was making sure that a large number of children with different backgrounds were all able to follow along and pass the exams. the schools addressed this challenge in the following ways: one main procedure, which was implemented in nearly all the schools was repeating a certain school level as follows: ‘there is an expected level of performance in the school, for every class we set it to be so minimum, “if you don’t reach the minimum, you would be advised to repeat the class.”’ (shs, h, m) repeating class sometimes made sense because some children needed more time to adjust to the school setting. alternatively, some students struggled with different subjects and needed to strengthen their knowledge in some fields in order to improve in their school career. some of the schools described the need of having to repeat a class as some kind of failure because the specific child did not get the result required or: ‘failed to perform to the expectations.’ (sp, h, f) this also involved subjecting students to a certain amount of pressure for achieving certain grades and because there were expected levels of performance, students kept that mindset in the back of their heads especially students with disabilities. however, sps-sen school was exceptional because it did not focus on achieving higher grades but was committed to providing education to children with disabilities thus: ‘for us, we don’t have to fight for the best grades … we mind about this child doing something … we had seven candidates and they all passed.’ (sps-sen, h, f) teachers’ education and skills as mentioned previously, the state was responsible for recruiting and funding a certain number of teachers and sending them off to the public and state-aided schools. in order to work as a teacher, the government required them to have a diploma, certificate or a master’s degree from the university or college. the private schools employed teachers themselves because they used part of the tuition to pay them. usually, teachers in secondary schools basically had two teaching subjects and were specialised in a certain field, whereas teachers in primary education had a wider range of subjects on a less specialised level, as their students were much younger. two of the state schools that had a strong foundation on disability (i.e. sps-sen and sps-sen-cf) were found to have a larger number of staff qualified in the field of special education needs as expressed: ‘so the teachers we have here … about eight teachers, have special training to manage these children. but we have also others, who learnt through experience.’ (sps-sen, h, f) teacher–student ratio two of the state schools had over 100 students in a single class. they were closely stacked together and movement between the desks was very difficult as reported: ‘one of the reasons is, the state schools are located far from young children under six years … the state schools often have only one room and one class with 100 pupils and one teacher. if it comes to eating, those schools don’t mind of the child has eaten or not.’ (pps, d, m) determining the course of action and school routines of private and state schools general daily routines every morning (monday to friday) when the first morning bell rang, there was a parade for students. the activities included checking student cleanliness and receiving communication from the teachers and student leaders or prefects, before entering their respective classrooms at 08:00 for reading, writing and other classroom work. at 10:30, there was a break of 30 min interval for the children in kindergarten, primary one and two to have breakfast, whilst other students had play. thereafter, they entered their respective classes for classroom work up to 12:30. between 12:30 and 14:00 was lunch break. between 14:00 and 16:30 was classroom work. between 16:30 and 17:00 was games and sports time. after 17:00 students were released to return home (for day scholars) or return to their dormitories for (boarding students). both saturday and sunday students rest at home or in their respective dormitories. note that students were free to go for prayers (on friday, saturday or sunday) according to their respective faith. the study identified that students with special needs were provided with support to enable them cope with the daily school routines, for example, eating breakfast, getting dressed, combing hair, brushing teeth, pushing in wheel-chair, etc. when teaching activities of daily living to children with intellectual disabilities such as toileting, hand-washing, washing clothes, etc., do the following: ‘we keep repeating, reminding them of their routines.’ (sps-sne-cf, h, f) classroom routines to facilitate curriculum access by learners with diverse learning needs, a variety of classroom strategies were used through, modification, adaptations or differentiations. a lot of effort was provided in giving students with special needs more one-on-one attention. teachers had to identify their students’ strengths in order to provide the special assistance and guidance throughout the learning process because every child might need a different kind of support as follows: ‘we know the abilities and we can assess the child … we operate like any other primary school, we follow the primary school curricula. but because it is a special school, we have our special ways we do prepare the children up to the level, doing the national primary examinations.’ (sps-sen, h, f) some schools discussed individual learning goals for certain children who could not follow the basic curriculum because of their disability as follows: ‘those who are in wheelchairs are ok, their intelligence is normal. but the majority who are able to walk straight … have a lot of learning problems … some may learn, but at a slow pace. like we have mild, severe and profound.’ (sps-sen, h, f) concerning the teaching methods used some schools tried to include everybody in the class and in the school as follows: ‘the usual ones, but it requires special attention in the learning process … use flexible language for the deaf to understand … our autistic kids need one to one exchange to achieve the learning levels. many need special guidance or need to be escorted …’ (sps-sen-cf, h, f) the interviewed schools had different positions when it came to separating the students according to their learning level. some preferred separation as they claimed that they were using different teaching methods for different ‘streams’ and therefore everyone in the group had to get the same needed support and assistance thus: ‘they may be in one room, but when the teacher is giving instructions, he or she handles the children individually, after identifying their strengths. so they may group them according to abilities.’ (sps-sen h, f) however, the students in the ‘higher’ streams got better marks than the students who needed more time with certain topics. other schools, however, operated in the opposite way by mixing up the students so children from different levels joined one group. those schools believed in having the students assisting each other so that everyone was able to profit from the united skills. this way, the teacher was not the main focus when supporting the group as the students were able to help each other most times. the public and state-aided schools had a large number of students per class. some teachers had to ‘float’ from one class to another because having seven levels in primary school (i.e. primary 1 to primary 7) and several streams in each level, teachers had to switch from one learning level to another. a part from the routine and regular teaching of students, those learners who did not meet the learning goals of the class especially those with dyslexia were supported first through school’s assessment team and later from the government. whatever their needs, children with dyslexia got assistance from teachers to transcribe or read during lessons and tests. an official had to come from the uganda national examinations board (uneb) to support these children during the final exams of ple: ‘we assess and determine the problem of the learner. so when he is in primary 7, we inform the board in writing … sent people who sat with them in the exam room and they did their exams and passed well.’ (sps-sen-cf, h, f) ‘at the school, the way that we support our pupils varies from class to class and from ability to ability.’ (sps-sen-cf, h, f) where students were all mixed-up, learners from different levels joined one group to enable assisting each other so as to profit from the united skills. this way, the teacher was not the main focus when supporting the group as the students were able to help each other most times. teaching activities of daily living all of the schools had specific courses of action regarding their focus, as they did not cater for all kind of impairment. for example, those schools that were founded on the notion of disability also focused on teaching those life skills (i.e. activities of daily living) on top of the set curriculum such as using the bathroom, washing, brushing teeth or even eating and drinking independently. thus, encouraging the students to live independently whenever possible and getting support when needed or asked for, which essentially promotes their self-confidence thus: ‘when they first come to our school, they have no skill at all. the teacher assesses the child and makes a file … the child cannot use the bathroom alone, brush the teeth, can’t bathe, they were feeding him at home, but now he learned how to feed himself and by the time the parents come, he is more autonomous.’ (sps-sen-cf, h, f) discussion understanding of inclusive schools and classrooms all the six interviewed schools claimed to be catering and working inclusively for children with disabilities. the inclusive practice is more about the right of access, no one left behind, removal of all barriers, embracing a diversity of learners and prevention of exclusion (rapp & corral-granados 2021). yet, all the six schools in the study excluded students with visual impairments by referring them to attend separate special schools with excuses that the teachers lacked sufficient knowledge and skills for teaching and supporting students with visual impairments. the six schools’ action of discriminating students with visual impairments does not reflect inclusion although they are supported by belay and yihun (2020) who argued that special educational services for learners with disabilities are often inadequate in mainstream schools, thus their complete access to the curriculum is hindered because of inadequate teaching skills for modifying or adapting the curriculum, lack of instructional and learning materials such as braille. ferreira and sefotho (2020) also agreed that students with visual impairment need specialised assistance to scholastically participate. however, the concept of inclusive education is about accepting all learners without exclusion, it is a right based and a route to inclusive societies (easnie 2018). inclusion focuses on diversity or differences in abilities, cultural background and gender as well as how school structures cater for those differences (sturm 2019). it is also about transforming schools by preventing exclusion so as to provide equal opportunities for a diversity of learners (ainscow, slee & best 2019). unicef’s (2017) definition of inclusive education is summarised as follows: inclusive education means all children learn together in the same schools (p. 1) according to caspersen, smeby and olaf aamodt (2017) ‘inclusion’ covers a variety of school objectives. yet, the real understanding of inclusive practice by the schools in the study was defined by each school’s concept, the different ways of operation and assessment of children with special needs, as well as the accompanying demands that came with inclusion. there was an obvious distinction between the state and private schools. for instance, as the private institutions demanded some sort of tuition, they had more possibilities to create pleasant learning environment. this included, for example, having smaller classes and more teachers, as well as transport opportunities, appropriate meals and boarding options. in addition, some of the private schools employed therapists and social workers who assisted the students during their school work, especially those who had special needs and required more support. by taking advantage of the given support system, students with special needs participated in regular class more easily and focused on developing their individual strengths whilst gaining more confidence, which is a fundamental component of inclusion because it emphases democracy and social justice (hernández-torrano, somerton & helmer 2020). therefore, private schools had a wide range of possibilities to take into account and include students with disabilities into their school because their financial means allowed them to do so. that, however, does not mean that the interviewed state schools were failing to do their job in practicing inclusiveness and high-quality education, as they relied on very limited funds provided by the government. state schools rather had to figure out and trusted the management style of the school principal and sound teaching methods in order to be able to cater for a very large number of students whilst still considering their different needs. as this was extremely challenging and demanded a lot of organisation and knowledge, not all state schools managed to accomplish that task. the state schools also had to follow the theoretical frameworks and political implications of the concept of inclusion in education, which stems from local policies, hardy and woodcock (2015) or the united nations educational, scientific and cultural organization’s (unesco) guidelines for inclusion and ensuring access to education for all (unesco 2005). accordingly, state schools were forced to focus more on the quantity than on the quality because they were obligated to admit all the students who applied because primary education in uganda was free. however, even though the schools were acting progressively in many ways, their teaching methods still could not be rated in the inclusive spectrum because they separated their students in each level into different streams according to their ability. some of these institutions did not believe in this concept and therefore rather separated the students according to their features, so that the ones with disabilities got separated into a different setting. the practicing of separate learning settings might cause the group that is weak to become even weaker (sarton & smith 2018). therefore, understanding that every child has individual strengths and weaknesses, regardless of being age appropriately developed or having a disability is important to consider when catering for everyone and giving every student the opportunity to learn. the exclusion of students with visual and hearing impairment in this study agrees with pellicano et al. (2017) who found out that exclusion of students with special education needs in schools can take several forms: permanent exclusion (excluded from school altogether) or fixed-term exclusion (short period). the management of the given funds in state institutions was another controversial topic within the different interviews because the school environments differed a lot from each other especially when considering the aspect of accessibility. comparing the state primary and secondary schools with the vocational training school all supported by the government and supposedly receiving the same kind of financial support, the study discovered that, whilst one of them was physically accessible for students with physical impairments, other schools did not even provide an appropriate access road. the results agree with limaye’s (2016) findings that inaccessible physical environment hinder access to education by students with physical disabilities. the study also agrees with belay and yihun (2020) that the physical infrastructure such as classrooms, playgrounds and toilets of many state schools are inaccessible for students with disabilities. that led to the question of how such large fluctuations within the different state-supported schools could be explained and tolerated as both parties did not deliver a uniform picture. inclusive education as per the curriculum inclusive education provides high-quality education, increased participation, sustainable and systemic change in educational values, cultures and design (unicef 2015). the current curriculum, which was incorporated in all ugandan schools, was called the thematic curriculum and was first introduced into the school routines in 2007. the curriculum was put into practice a year after the uncrpd was adopted and in the same year, as it was signed by uganda (united nations treaty collection 2018). the new curriculum stood out from all the previous ones, as it proposed innovative learning and teaching methods, emphasised the importance of providing school materials in several different languages and generally shifted from teacher to child-centred teaching structure. this corresponds with jorgensen et al. (2012) provision that: curriculum and instruction are designed to accommodate the full range of student diversity based on universal design principles. individualized supports are provided to students with significant disabilities to enable them to fully participate and make progress within the general education curriculum …. presented in a variety of accessible formats …. (p. 6) as many schools in uganda struggle with a lack of teachers and a large number of students in one class, schools still try hard to figure out ways to facilitate inclusive education. teachers in the state schools had to deal with rather large classes (united nations development programme 2016). that made focusing on all the students’ different needs extremely difficult compared with other countries, where the teacher to student ratio is much smaller. apart from the vocational training school, the teaching methods of the state schools could not be rated in the inclusive spectrum because they separated their students in each level into different streams according to their ability because of the use of a centralised rigid curriculum. the inflexible instructional methods that permitted only one style of teaching contravened unesco’s (2009) principle of an inclusive curriculum. schuelka (2018) contended that a centralised rigid curriculum, which does not give space for flexibility or modification is unsuitable for inclusive education in schools. the schools claimed to be forced to act that way as they had to deal with a large number of students and that seemed to be the only way for them to able to reach the governmental standards. this streaming subjected students to a competitive situation that was discouraging for students in the lower streams because those in better streams often obtained better marks. this was also the main reason why many families with children with disabilities (especially learning disabilities) tried to get access to private schools to enable their struggling children to follow the teaching and operating methods to avoid dropping out of school. the research findings are similar to a kenyan study by disability africa (2017), which found that the high dropout rates from schools by children with disabilities were caused by multiple barriers that include rigid instructional methods. other students had to put in a lot of effort during their free time, after school, or during extra lessons, which some of the interviewed state schools offered for free. changes made by convention on the rights of persons with disabilities the crpd is a fundamental advance step for promoting equal participation of persons with disabilities (pwds) and its practical effect relies on how court decisions and domestic policies are implemented. the policies and other regulatory frameworks of each member state such as uganda, act as pillars in guaranteeing inclusion because crpd provides inclusion guidelines for pwds and outlines their rights against discrimination and recommends the required support to enable them live independent lives (bratan et al. 2020). in this regard, the crpd is a model for future human rights treaties as stated (kanter 2015): [n]ever before in the history of the un were the subjects of a treaty invited to play such a prominent role in the drafting process. (p. 8) watson and vehmas (2020) confirmed that the crpd is upheld by activists and scholars as a ‘paradigm shift’ regarding human rights and disability. some of crpd’s critical areas for addressing disability inequality include legal capacity, independent living and reasonable accommodation. convention on the rights of persons with disabilities has greatly shaped policy and the thinking about disability, mladenov (2013) and for uganda, crpd’s influence brought about a radical change in the disability domain when the uganda persons with disabilities act (upwda 2020) was enacted based on crpd principles. one of upwda’s (2020) clauses on non-discrimination in the provision of education services stipulates as follows: an institution of learning shall not discriminate against a learner with a disability, on the basis of disability. a person who willfully prevents a child with a disability from attaining education commits an offence, and is liable, on conviction, to a fine not exceeding twenty currency points or imprisonment for a term not exceeding six months or both. (pp. 3–4) the given affirmative action is a great achievement for both the crpd and pwds in fighting social discrimination against pwds in schools of uganda. in trying to restore the rights of pwds, the upwda (2020), which was adapted from the crpd, also provides a reference to several items that include respect for the evolving capacities of children with disabilities, accessibility, participation and inclusion, respect for diversity, non-discrimination and equality (watson & vehmas 2020). the upwda (2020) also calls for sufficient provision of support for individualised services to learners with disabilities and availing enough skilled special needs teachers, thereby anticipating effective and full inclusion of pwds in the education system in the near future. basing on the crpd guiding principles, the world bank (2018) has been funding disability-inclusive education programmes in africa including uganda. some of the funding was used in the construction of physically accessible classrooms and accessible ramps in uganda. the dilemma of deaf inclusion this study revealed that students with hearing-impairment were struggling with managing the daily conditions at mainstream schools where they appeared unique and often had to pretend that they heard what was being spoken. these mainstream schools had more restrictive environments and were not quite inclusive for deaf learners because they struggled with developing and sustaining social relationships, academic content and lacked a working language for communication. kompara, hölbl and welzer (2021) advocated for the provision of education inclusion in practice and not on paper for traditional minorities like deaf learners in terms of language for communication. in uganda, like in some developing countries, deaf children begin primary education without a language, and although inclusion would eliminate the discrimination of these children, the reality remains that they lack the language (khairuddin 2018). egard, hansson and wästerfors (2022) argued that, in addition to lack of language, the loneliness and psychosocial problems experienced by learners with hearing impairment and their increasing poorer academic performance than their peers call for better development and designing of practices that are more inclusive and embracing a diversity of students in schools. the education of non-deaf children with deaf children as advocated by disability activists is contested by researchers such as, snoddon and underwood (2017) who contended that the empowerment and future sustainability of the deaf community will depend on the learning of the sign language by the deaf children and their families and the teachers and other deaf pupils in congregated spaces. therefore, this sign language is an educational tool, which should be accorded a linguistic status of cultural rights of deaf communities (khairuddin 2018). nevertheless, for the deaf community to achieve linguistic status as a cultural right, sign language teaching programmes should be introduced and qualified sign language teachers employed to facilitate sign language accessed by deaf children, their families and non-deaf learners at an equal educational level, (murray et al. 2018). singer and vroman (2019) also recommended that, instead of concentrating on uncrpd (2006) least restrictive environment, a more culturally sustaining, liberating and supportive environment should be considered for deaf students. the most suitable educational provisions for deaf children therefore should include easy access to separate classrooms, sign language and assistive devices such as cochlear implants and hearing aids (unesco 2020). following the given argument there are already existing and contradicting ideologies between the disability rights movements and those of the deaf community, which usually results into disputes (khairuddin 2018). whilst the human rights movement considers the deaf community as having the impairment, the deaf community categorically rejects being defined as having a disability or an impairment but instead wish to be regarded as ‘different’ although they enjoy and receive the legal accommodation and benefits meant for pwds (harvey 2008). mcdonnell (2016) asserted that, although deaf people reject being considered impaired, they share a history of exclusion and other forms of oppression like other pwds. the major fundamental issues for the deaf community are culture and language and not much to do with cochlea implant, audiograms or decibels whilst their main obstacles include high degree of inequality, inadequate deaf teachers, lack of a working language, inaccessible curricular and inappropriate teaching methods (mcdonnell 2016). the denial and rejection of disability by the deaf community whilst enjoying and taking advantage of the legal rights of pwds also calls for government’s expansion and modification of current laws so that the views of this minority (deaf community) can be accommodated. the dilemma of deaf-blind inclusion all the schools in the study did not enroll the blind and deaf-blind learners as they claimed not to have the resources for reformatting the school materials or for hiring specialised teachers. in addition, the schools did not know how to effectively communicate with the deaf-blind yet, communication is essential to deaf-blindness, (world federation of the deafblind [wfdb] 2018). however, the communication requirements of deaf-blind people are different because of variances in the learnt skills, personal characteristics, sensory impairments, history, type and extent (hersh 2013). in addition to communication needs, deaf-blind people also have a diversity of other requirements, perceptual motor and cognition development and parent–child relationships (manga & masuku 2020). this diversity of requirements can lead to serious educational needs that are difficult to accommodate alone either in special education schools for children with blindness or children with deafness (wolford 2016). nelson and bruce (2016) argued that because learning takes place through hearing and vision, there is a need for a team of paraprofessionals and skilled professionals to design suitable communication and educational opportunities for deaf-blind people. it is necessary to design multiple communication strategies to be put in practice both at school and home environments to facilitate communication for both parties (manga & masuku 2020). accordingly, developing a functional communication system can be essential in the deaf-blind student’s educational progress through participation in social activities, relationship development and facilitating their independence. however, manga and masuku (2020) recommend that a functional communication method should be setup to facilitate educational access by learners with deaf-blindness and should involve adequate support and preparedness and possession of appropriate skills and knowledge by educators and their assistants. course of action and school routines some school routines of private and state school included supporting the diverse needs of learners, facilitating inclusive classrooms and providing supportive teaching and learning strategies. however, some classes in the two state schools had more than 100 students taught and supervised by one teacher at a time. the classes were too crowded with very little space between desks, which could not permit students using mobility devices to easily navigate. therefore, this study is in line with grant et al. (2014) who argued that large class sizes become inaccessible, especially for students with mobility difficulties and hinder participation by all students. small class sizes are very suitable for students’ learning, especially those with learning difficulties and can improve interaction between the individual student and the teacher especially on a one-to-one basis (ballantine & spade 2014:82). the teacher is also in a better position to address the specific needs of the students and use diverse instructional approaches flexibly. the study discovered that, when working with students with intellectual disabilities you have to keep repeating, reminding them of their routines, for example, washing hands, getting dressed, combing hair, brushing teeth and toileting. remember to always provide a lot of feedback and support for the student for each step in the routine and to build the student’s independence by reducing the verbal reminders. procedures and routine in school especially when supporting students with intellectual disabilities were found to be very fundamental as they enabled students to get organised and somehow become independent (hayes et al. 2018). conclusion the understanding of inclusion within the six different schools was mainly characterised by the awareness of the students’ needs, the accessibility aspect, the use of different educational or teaching methods and the overall school concept. the study finally concluded that, although all the schools were struggling in practicing inclusiveness, state-aided special primary school for children with physical disabilities (sps-sen) and state-aided special primary school church founded (sps-sen-cf), which were founded on the background of disability performed better than either private primary school (pps) or any other state primary school (sps), state high school (shs) or state vocational training school (s-voc). whilst welcoming and teaching students of different kinds despite their impairments, all the schools showed significant differences when it came to admission, tuition, accommodation and ways of operating. this study revealed that the schools were missing a realistic and achievable standard required for inclusive practice. the study therefore recommended that the ugandan moes should carry out an assessment and evaluation of schools on a regular basis in order to achieve the implementation of unified regulations within each and every school. it should be observed that the provision of an access ramp alone or the admission of one particular category of students is not enough to qualify a school as being inclusive. the study therefore recommended additional educational materials and adequate funding for schools as the base of a functioning and well-organised education system so as to facilitate free and high-quality public education for all students, including those with special needs. finally, the study recommended that, in order to fully achieve un’s inclusive education, all stakeholders (including policymakers and implementers) should put in place a combination of the following factors: (1) positive attitude, non-exclusion and admission for all, provide barrier-free and accessible physical environment, appropriate, teaching and learning materials; (2) skilled teachers in the area of special education needs; (3) involvement of parents, government, donor agencies and civil society organisations; (4) a flexible curriculum; (5) adequate funding; (6) availability of assistive devices; (7) non-institutionalisation; (8) engaging professionals and other stakeholders; and (9) free education for all and addressing the specific educational needs of the diversity of learners. acknowledgements the authors thank all the study participants for their valuable time and contribution towards this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions data was transcribed by m.l.h. e.m. and m.k. developed the proposal and collected the data. e.m. analysed the data and wrote the research report. funding information the article processing charge was funded by the deutsche forschungsgemeinschaft (dfg, german research foundation) – 491192747 and the open access publication fund of humboldt-universität zu berlin. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references african union, 2014, an outlook on education report: southern african development community, association for the development of education in africa, tunis belvedere, viewed 20 may 2021, from https://www.adeanet.org/sites/default/files/au_outlook_report_sadc_english_version_2014_web.pdf ainscow, m., slee, r. & best, m., 2019, ‘the salamanca statement: 25 years on’, international journal of inclusive education 23(7–8), 671–676. https://doi.org/10.1080/13603116.2019.1622800 ballantine, j.h. & spade, j.z., 2014, schools and society: a sociological approach to education, sage, london. belay, m.a. & yihun, s.g., 2020, ‘the challenges and opportunities of visually impaired students in inclusive education: the case of bedlu’, journal of pedagogical research 4(2), 112–124. https://doi.org/10.33902/jpr.2020060437 bratan, t., fischer, p., maia, m. & aschmann, v., 2020, ‘implementation of the un convention on the rights of persons with disabilities: a comparison of four european countries with regards to assistive technologies’, societies 10(4), 1–25. https://doi.org/10.3390/soc10040074 busetto, l., wick, w. & gumbinger, c., 2020, ‘how to use and assess qualitative research methods’, neurological research and practice 2(14), 1–10. https://doi.org/10.1186/s42466-020-00059-z caspersen, j., smeby, j.c. & olaf aamodt, p., 2017, ‘measuring learning outcomes’, european journal of education 52(1), 20–30. https://doi.org/10.1111/ejed.12205 chitiyo, a. & dzenga, c.g., 2021, ‘special and inclusive education in southern africa’, journal of special education preparation 1(1), 55–66. https://doi.org/10.33043/josep.1.1.55-66 disability africa, 2017, kenya, viewed 09 may 2022, from https://www.disability-africa.org/kenya egard, h., hansson, k. & wästerfors, d., 2022, accessibility denied: understanding inaccessibility and everyday resistance to inclusion for persons with disabilities, routledge, new york, ny. european agency for special needs and inclusive education (easnie), 2018, evidence of the link between inclusive education and social inclusion: literature review, easnie, odense, viewed 27 may 2021, from https://www.european-agency.org/resources/publications/evidence-literature-review ferreira, r. & sefotho, m.m. 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https://mastercardfdn.org/wp-content/uploads/2019/03/sea-finance-equity_real_final-version_feb-2019-1.pdf abstract introduction background research methods and design results discussion limitations of the study recommendations conclusion acknowledgements references about the author(s) mokgadi k. mashola department of physiotherapy, university of pretoria, pretoria, south africa diphale j. mothabeng department of physiotherapy, university of pretoria, pretoria, south africa citation mashola, m.k. & mothabeng, d.j., 2019, ‘associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury’, african journal of disability 8(0), a463. https://doi.org/10.4102/ajod.v8i0.463 original research associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury mokgadi k. mashola, diphale j. mothabeng received: 28 nov. 2017; accepted: 15 feb. 2019; published: 11 june 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the development of secondary health conditions (shcs) after spinal cord injury (sci) is common and can affect an individual’s emotional well-being, and his or her health-related quality of life (qol). little is known about relationships between performing health-benefiting behaviours and the presence (or absence) of shcs and qol, particularly in south africa. objectives: this research study was conducted in order to determine the associations between health behaviour, shcs and qol in people with sci (pwsci). method: this cross-sectional study included 36 pwsci discharged from a private rehabilitation facility in pretoria, south africa. the pwsci completed questionnaires pertaining to lifestyle, independence, presence of shcs, social support and qol. data were analysed using descriptive and inferential statistics such as correlation tests and chi-square test of independence (x2) using the spss v25. moderate, moderately high and high correlations are reported (pearson r ≥ 0.4). results were significant if p < 0.05. results: participation in health-benefiting behaviour was associated with increased qol (r = 0.457, p < 0.01) and increased social support from family and friends (r = 0.425, p < 0.01), which was associated with increased qol (r = 0.671, p < 0.001). not participating in specific neuromusculoskeletal health behaviours was found to be associated with the overall presence of shcs (r = -0.426, p < 0.01). conclusions: participating in health-benefiting behaviour can reduce the development of shcs and subsequently increase qol in pwsci. health professionals must focus on minimising the development of shcs by providing specific education on good health-benefiting behaviour. keywords: spinal cord injury; secondary health conditions; quality of life; physical activity; health behaviour; social support; social relationships. introduction problem statement spinal cord injuries (scis) not only limit physical function and independence but also impair psychosocial and emotional function and predispose affected individuals to secondary health conditions (shcs) (middleton et al. 2004). people with sci (pwsci) are driven to act and behave the way they do by both internal and external factors, and such behaviours may either enhance or reduce their quality of life (qol). social support is an external factor that is crucial to meet the challenges that pwsci face after injury; however, studies have shown that there is a social support deficit after sci (müller et al. 2012). substance abuse is linked to reduced social support, being more vulnerable to depression and reduced participation in physical activity (middleton et al. 2004). people with sci are known to modify their engagement in health behaviour after the development of shcs, and not before (bloemen-vrencken et al. 2007). the development of shcs may require pwsci to perform more health behaviours in order to try and avoid future shcs. background secondary health conditions have been associated with reduced life expectancy, poor health outcomes and increased hospital stay (joseph & nilsson wikmar 2016). pressure ulcers (pus), respiratory complications and urinary tract infections (utis) are the most common shcs globally (kalpakjian et al. 2007) and in south africa (joseph & nilsson wikmar 2016). secondary health conditions affect emotional well-being and reduce social activity, community participation and health-related qol of pwsci (middleton et al. 2004). health-related qol is further diminished by reduced participation in physical activity (pa) (sedentary lifestyle). reduced pa can be because of numerous factors, including psychological factors, poor access to exercise facilities and impaired or loss of motor function (stevens et al. 2008). participation in regular pa has numerous benefits such as psychological well-being (galea 2012), as well as reduced risk of heart disease, diabetes and obesity (martin ginis et al. 2012); improved cardiovascular fitness; reduced levels of depression; and consequently, an improved qol (ellapen et al. 2017). despite the benefits of pa, pwsci often spend less than 2% of their time engaging in any form of leisure-time physical activity (ltpa) (martin ginis et al. 2008). not engaging in any pa presents a serious health issue in pwsci as it increases the risk of developing shcs (martin ginis et al. 2008), which further reduces the qol of pwsci. trends one of the ways through which pwsci can avoid shcs and improve qol is ltpa, which includes playing sports, exercising at the gym or taking a stroll (martin ginis et al. 2012). barriers to ltpa generally include time constraints, lack of internal motivation and not knowing which exercise to perform. however, pwsci experience added challenges, such as locating facilities with accessible exercise equipment, shower facilities after exercise and fitness professionals who are aware of the exercise needs of pwsci (cowan, nash & anderson 2013). physical activity aims to improve or maintain some component of physical fitness and is promoted within the sci community as a means of improving physical health and qol (roberton et al. 2011). quality of life is an individual’s perception of his or her own position in life, which is defined by his or her own culture, values, goals, expectations and concerns (whoqol group 1994). the presence of shcs is the single important predictor of qol, followed by societal participation (barker et al. 2009). poor qol may lead to readmission to hospital, further reduced social interaction and reduced mobility. quality of life positively influences life satisfaction, perceived social support, home and community access and participation, perceptions of having control over one’s own life and satisfaction with relationships (hill et al. 2010). quality relationships improve mental health and provide or receive support, while maintaining active roles in significant relationships is important for families adjusting to physical limitations (tramonti, gerini & stamacchia 2015). cowan et al. (2013) found that 84% of pwsci did not enjoy exercise, and the reasons are multi-factorial. personal and external factors such as motivation to exercise and accessibility of training facilities are some of the factors preventing pwsci from enjoying exercise. more importantly, the belief that exercise will worsen the condition (or fear of injury) has been found to be associated with the reduced participation in pa. the fear is not unfounded, as exercising incorrectly (especially without supervision), and beyond the prescribed intensity, was suggested to be associated with musculoskeletal pain after commencement of exercise (curtis et al. 1999). objectives and contribution to the field there is limited research internationally and locally on shcs following scis. only one study, conducted in cape town, has assessed the prevalence of shcs in patients with scis in south africa (joseph & nilsson wikmar 2016). we augment the existing literature, incorporating studies from canada and australia, by identifying shcs most experienced by pwsci from tshwane district of south africa. we assess health behaviours, and their association with the presence or absence of shcs, thus enabling physiotherapists to develop targeted education and prevention programmes that can be implemented while pwsci are being rehabilitated. we determine the influence of shcs on qol in pwsci. research methods and design design we used a quantitative approach, a cross-sectional and correlational survey design, to determine if pwsci performed health-promoting behaviours, whether they had any shcs and to determine their independence levels, self-perceived qol and perceived levels of social support. the target population included all pwsci who were discharged from a private rehabilitation centre in the city of tshwane (cot) metropolitan area, from january 2008 to december 2012. the rehabilitation centre’s database was perused and pwsci with a residential address in the cot metropolitan area and correct contact details were included in the study. further inclusion criteria were accessibility for the researcher and informed consent. we excluded participants younger than 18 years to avoid the involvement of a third party. as a third party, parents would have to provide consent and thus feel obliged to answer the questionnaires on the minor’s behalf. we wanted to receive accurate subjective information from the pwsci and not from a third party. we collected data at either the participant’s homes or workplaces. the study was conducted during business hours; therefore, the setting was dependent on the participant’s preference. procedure non-probability convenience sampling was used, and to guarantee representativeness of the population, all pwsci residing in the cot metropolitan area that met the inclusion criteria were eligible to partake in the study. we identified 171 eligible participants from the patient database at the rehabilitation centre. we telephoned all the potential participants to explain the study and asked permission to visit them in their homes or workplaces to explain the study in detail. during the visit, the study was personally explained to the potential participants and signed informed consent was obtained. only 36 participants consented to participate in the study, with 135 participants not participating as they had relocated, were no more, were unreachable or not interested. socio-demographic data such as age, gender and injury profile were collected using a socio-demographic questionnaire. the functional independence of pwsci was collected using the spinal cord independence measure (scim iii). the scim iii is a 19-item questionnaire which determines the participant’s independence in the areas of self-care (feeding, grooming, bathing and dressing), respiration, sphincter management and mobility (bed and transfers as well as indoor/outdoor mobility). the scim iii has excellent internal consistency (cronbach’s ∝ = 0.77–0.91) (catz & itzkovich 2007). higher scim iii scores reflect higher levels of independence. to determine if participants were functioning optimally, their scim iii scores per neurological level of injury (nli) were compared to expected total and median scim iii scores for people with complete sci by aidinoff et al. (2011). these values can also be used as minimum target values for people with incomplete sci. the expected total (and median scores) are as follows: c1–c4 = 4–19.5 (8–21.5) c5–t1 = 24–52 (23–42) t2–t6 = 53–64.2 (60.5–57.8) t7–t12 = 60.9–69.6 (66.3–67.5) l1–l5 = 70.5–74.1 (72–76.3) the leisure-time physical activity questionnaire for people with spinal cord injury (ltpaq-sci) was used to determine if pwsci participated in any ltpa. the ltpaq-sci is a three-item instrument that captures different types of ltpa performed at different intensities such as mild, moderate and heavy intensity ltpa (martin ginis et al. 2012). the ltpaq-sci showed significant test–retest reliability coefficients with all intraclass correlation coefficients (icc) > 0.60 (with total and heavy intensity ltpa showing the strongest iccs at 0.83 and 0.93, respectively). the scores were determined by calculating the total number of minutes per activity performed at different intensities, thereby yielding the total number of minutes of ltpa performed per day (martin ginis et al. 2012). data pertaining to health behaviour were collected using the spinal cord injury lifestyle scale (scils). the scils is a 25-item questionnaire used to determine the participant’s engagement in health-benefiting behaviour (pruitt et al. 1998). the scils has five subscales, namely cardiovascular (four items), genitourinary (four items), neuromuscular (eight items), skin (six items) and psychosocial (two items). the total scils internal consistency was found to be excellent (cronbach’s ∝ = 0.81) and poor to excellent for the scils subscales (cronbach’s ∝ = 0.31 to 0.86). higher total scores are intended to indicate better performance of behaviours, which in turn promote health in pwsci. the spinal cord injury secondary health condition scale (sci-scs) was used to determine the presence of shcs. the sci-scs is a 16-item questionnaire, which has adequate to excellent internal consistency (cronbach’s ∝ = 0.761 to 0.861). for each shc listed, pwsci were expected to rate how much each shc affected their activities and independence in the last 3 months. higher scores indicate greater overall problems with shcs (kalpakjian et al. 2007). data pertaining to qol and social support were collected using the world health organization quality of life assessment (whoqol-bref) and the social support list (ssl-12). the whoqol-bref is a 26-item questionnaire that measures both objective and subjective qol. it is grouped into four domains of qol (physical health, psychological health, social relationships and environment) and two items that measure the overall qol and general health (hill et al. 2010). the whoqol-bref showed high reliability with cronbach’s ∝ = 0.74–0.87. a score is generated for each scale by summing up the scores of each item and the total score is calculated by summing the five scale scores. sub-scale scores were also used to identify specific areas of concern. the ssl-12 is a 12-item questionnaire used to assess pwscis’ perceived social support from members of their primary social network (van leeuwen et al. 2010). the measurement properties of the ssl-12 were found to be satisfactory with significant spearman correlations (range 0.34–0.64; p < 0.01). the higher the score, the more social support perceived by pwsci (van leeuwen et al. 2010). analyses data were captured on an excel spreadsheet and analysed with descriptive and inferential statistics, using the spss v25. socio-demographic information and the abovementioned questionnaire’s scores were analysed using frequencies, percentages, means and standard deviations. associations between variables of interest were analysed using pearson correlation tests and expressed as ‘r’. results were statistically significant if p < 0.05. this manuscript reports correlations in the following manner (safrit & wood, cited in zhu 2012): no correlation: r = 0 – 0.19 low correlation: r = 0.2 – 0.39 moderate correlation: r = 0.4 – 0.59 moderately high correlation: r = 0.6 – 0.79 high correlation r = ≥ 0.8 portney and watkins (2015) recommended that low correlations not be discussed as clinically important merely owing to the achievement of statistical significance (when p > 0.05). zhu (2012) further supported this and highlighted the challenges with drawing conclusions merely based on the p-value, as the p-value is biased by the sample size. this study will therefore only draw conclusions on moderate, moderately high and high correlations as described above. the chi-square test of independence (x2) was used to further determine if there were significant relationships between specific shcs and items pertaining to health behaviour and qol (categorical variables) (portney & watkins 2015). potential benefits and hazards this study provides insights into the relationships between health behaviours, shcs and qol after sci. there were no hazards for the participants, as the patients were not in any physical or psychological harm nor did the study require any physical exertion. ethical considerations we obtained informed consent from the participants prior to completing the questionnaire. the questionnaire and the reasoning for the study were explained to the participants. the researcher addressed any questions or misgivings before filling in the questionnaires to ensure that participants understood the nature of the study and their role in it. this study received ethical approval from the faculty of health sciences research ethics committee at the university of pretoria (approval number 21/2014). results demographic information, injury profile and functional independence of people with spinal cord injury most participants were male (n = 24, 67%), single (n = 18, 50%) and between 30 and 39 years old (n = 10, 28%). fewer participants were employed after sci (n = 22, 61%) compared to those employed before sci (n = 27, 75%). most scis were incurred in motor vehicle accidents (n = 14, 38.9%) and paraplegia was the most common type of injury (n = 21, 58%). most of the participants had complete injuries (n = 20, 56%), and the most common nli was in the thoraco-lumbar region (n = 21, 58%). twenty-six participants (72%) were readmitted to hospital after rehabilitation (table 1). most of the participants did not smoke (n = 33, 92%) and did not consume alcohol (67%, n = 24). there were 21 participants (58%) with paraplegia and 15 (42%) with tetraplegia (table 1). figure 1 illustrates that participants with l1–l5 nli did not meet the expected scim iii scores (65% vs. 72%) as stipulated by aidinoff et al. (2011). figure 1: achieved versus expected spinal cord independence measure scale iii scores of people with spinal cord injury. table 1: frequency distribution of demographic variables of participants (n = 36). health behaviour and participation in leisure-time physical activity most participants avoided smoking (n = 32, 89%) and always attempted to reduce their risk of heart disease (n = 16, 44%). most participants paid attention to their body position when sleeping (n = 23, 64%) and while sitting in the wheelchair (n = 16, 44%). nineteen participants (53%) always performed range of motion (rom) exercises and 19% (n = 7) of participants never performed muscle strengthening exercises. despite 39% of participants (n = 14) always performing some type of pressure relief, 17% (n = 6) never inspected their skin for breakdown. most of the participants were always careful while handling hot liquids (n = 35, 97%) as shown in table 2. the majority of pwsci (42%) in this study did not participate in any ltpa as shown in figure 2. figure 2: participation in leisure-time physical activity by people with spinal cord injury using the leisure-time physical activity questionnaire for people with spinal cord injury. table 2: descriptive statistics of the spinal cord injury lifestyle scale (n = 36). secondary health conditions the most common shcs, causing significant problems for participants, were chronic pain (n = 17, 47%), muscle spasms (n = 13, 36%) and joint and muscle pain (n = 8, 22%). only 14% (n = 5) of participants reported pus and bowel dysfunction as significant problems. burns were the least common shc with only one participant reporting it as a mild problem. the majority of the participants (n = 25, 69.4%) reported that pus were not a problem in the last 3 months, while five participants (13.9%) reported pus as a significant problem (table 3). table 3: secondary health conditions experienced by people with spinal cord injury as well as the descriptive statistics of the spinal cord injury secondary conditions scale (n = 36). quality of life and social support most participants (n = 21, 58%) rated their qol as good, while 33% (n = 12) were neither satisfied nor dissatisfied with their health. only two participants (6%) did not enjoy their lives at all as compared to eight participants (22%) who really enjoyed their lives. eleven participants (31%) found their lives to be very meaningful, while 10 participants (28%) found their lives to be moderately meaningful. thirteen participants (36%) were satisfied with their ability to work as compared to the eight participants (22%) that were dissatisfied. most participants (n = 19, 53%) were satisfied with themselves and their personal relationships, and 14 participants (39%) were satisfied with their sex life. extreme physical pain limited 47% of participants (n = 17) in their daily activities, with nine participants (25%) needing medical treatment to function in their daily life. most participants reported negative feelings, such as depression (n = 34, 94%). nine participants (25%) reported that they always had negative feelings, 13 (36%) reported the feelings very often, seven (19%) quite often and five (14%) reported the feelings as occurring occasionally (table 4). most participants (n = 19, 53%) reported that they received help ‘very often’ in special circumstances. however, 28% of participants were rarely invited to a party or dinner. table 4: descriptive statistics of the world health organization quality of life assessment-bref scores (n = 36) associations between health behaviour, secondary health conditions and quality of life health behaviour overall, health behaviour had a moderate correlation with qol (r = 0.457, p < 0.01) and social support (r = 0.425, p < 0.01). specific genitourinary health behaviour had a negative and moderate correlation with the pwscis’ overall independence (scim iii score) (r = -0.468, p < 0.01). people with sci who never rest their shoulders when painful reported the presence of joint and muscle pain as a significant problem, and those who rested their shoulders reported the opposite, suggesting that the two variables are associated. this association is confirmed by a chi-square test of independence, [x2 (12) = 108.0, p < 0.001]. presence of secondary health conditions the overall presence of shcs showed moderate and negative correlations with the neuromusculoskeletal health behaviour (nmshb) (r = -0.426, p < 0.01). the presence of shcs only showed low and negative correlation with respiratory and sphincter independence and functional independence (r = -0.388, p < 0.05 and r = -0.343, p < 0.05 respectively). people with sci who did not report burns as a shc (97%) reported to being careful when handling hot liquids and the chi-square test confirmed the association [x2 (1) = 36.00, p < 0.001]. sixty-seven per cent of pwsci who did not report contractures as a shc reported knowing exactly what to do when noticing the beginning of a contracture and the chi-square test confirmed the association [x2 (9) = 108.00, p < 0.001]. people with sci who did not report chronic pain as a problem were very satisfied with their health, while those who reported chronic pain as a significant problem were very dissatisfied with their health. this finding suggested an association between the two variables, which was confirmed by a chi-square test [x2 (12) = 23.856, p < 0.05]. furthermore, of the 47% (n = 17) who reported chronic pain as a significant problem, 88% (n = 15) reported needing medical treatment to function in their daily life [x2 (12) = 22.503, p < 0.05]. of the 50% of pwsci who reported joint and muscle pain as a problem (table 3), 33% (n = 6) reported the pain as a significant problem and they all felt that the physical pain prevented them from doing what they need to do (physical qol) [x2 (12) = 23.702, p < 0.05]. people with sci who reported bladder dysfunction (such as incontinence) reported feeling depressed very often [x2 (12) = 28,60, p < 0.01]. quality of life and social support overall, qol had a moderately high correlation with social support (r = 0.671, p < 0.001) and a moderate correlation with skin health behaviour (shb) (r = 0.517, p < 0.01). psychological health and social relationships qol also showed moderate correlations with shb (r = 0.421, p < 0.01 and r = 0.446, p < 0.01, respectively). people with sci who were satisfied with their personal relationships reported to be aware and always attempted to reduce their risk for heart disease as compared to those who were dissatisfied with their personal relationships [x2 (8) = 17.159 p < 0.05]. those who were dissatisfied with the support they received from their friends did not adequately perform the rom exercises, and those who were very satisfied with the support received from their friends almost always performed rom exercises [x2 (12) = 28,190 p < 0.01]. discussion outline of the results the purpose of this study was to investigate the associations among health behaviour, shcs and qol in pwsci. participation in specific health-benefiting behaviour was found to be associated with the presence of shcs, qol and social support from family and friends. health behaviour, the presence of shcs and qol varies with each individual after sci owing to the different impairments that present after injury. the impairments (which are deviations from the normal functioning of body structures and functions) may be temporary or permanent; progressive or regressive; mild or severe and may be intermittent or continuous (who 2001). because of the impairments being different in different individuals, participation in health behaviour, the presence of shcs and the reporting of qol will differ accordingly. it is therefore understandable that specific impairments following a sci predispose pwsci to developing specific shcs. persistent and severe pain is common after sci (widerström-noga et al. 2016) and we found neuropathic pain to be the most common shc in our study. the prevalence of pain has been reported in 11% – 94% of pwsci, and pain is found to be associated with poorer psychological functioning and reduced qol (andressen et al. 2016). our findings are therefore not surprising, as pwsci in our study who reported chronic pain as a significant problem were very dissatisfied with their health. the problem of pain following sci has been rated as one of the most difficult problems to manage, as it directly contributes to disability and reducing of qol and life satisfaction (siddall 2009). in this study, half of the pwsci reported nociceptive pain in the form of joint and muscle pain in the shoulders. our findings are in line with literature, as an estimated 67% of pwsci suffer from musculoskeletal shoulder pain, with prevalence rates ranging from 30% to 78% (eriks-hoogland et al. 2014; morrow et al. 2010; rafiullah, shah & mazhar 2017). the lifelong dependency of pwsci on wheelchairs for activities of daily living (adls) and mobility causes repetitive loading of the shoulder joint which can increase the stress on the shoulder joint, thereby causing shoulder pain (cardenas & felix 2009). people with sci may feel that the presence of pain prevents them from doing what they need to do, but because of dependency on their upper limbs they may continue to load their shoulders despite the pain. it was therefore not surprising that we also found that pwsci with joint and muscle pain did not rest their shoulders. this behaviour is understandable considering that pwsci depend on their upper limbs for daily activities, transfers and propelling their manual wheelchairs (eriks-hoogland et al. 2014). the increased use of the upper extremities may exacerbate shoulder pain, possibly leading to joint degeneration, placing pwsci at risk of surgical interventions. daily and constant use of medication to function (as found in this study) increases the feeling of dependency after sci and may lead to an increased risk of depression and decreased health satisfaction. although this study did not find any association between pain and depression, there is increasing evidence emerging that depression often coexists with pain and higher proportions of pwsci have more depressed mood than able-bodied people (ataoğlu et al. 2013). this study, however, did find an association between bladder incontinence and depression, which is supported by liu et al. (2010), who also found that incontinence has a negative influence on the emotions of pwsci. we did not expect the low correlations between overall presence of shcs and the non-modifiable injury characteristics of pwsci (such as level of injury), the poor respiratory and sphincter management as well as functional independence scores according to the scim iii. instead, the overall presence of shcs was found to be associated with poor engagement in nmshb. this suggests that most of the shcs after sci are not only reliant on the type and severity of the sci but also on the health behaviour of pwsci. this then means that shcs can be significantly delayed or prevented by adopting good health behaviour, as supported by pruitt et al. (1998). our findings are therefore in line with literature, as bloemen-vrencken et al. (2007) previously suggested that pwsci might experience fewer shcs if they performed good health behaviours. good health behaviours can significantly delay shcs, such as pus, shoulder joint degeneration and pain, and utis, among others (pruitt et al. 1998). contrary to expectations, pus were not a significant problem, ranking fourth in the top five shcs in our findings. only five participants (13%) reported pus as a problem. pressure ulcers are one of the most common shcs in the sci population and numerous authors have confirmed this in studies of prevalence, risk factors and impact on qol (marin, nixon & gorecki 2013; mathew et al. 2013; scheel-sailor et al. 2013). the low prevalence of pus in our study may be because of small sample size (n = 36) or all pwsci being discharged from a private rehabilitation centre. the low prevalence of pus in this study is also in line with the good skin health behaviour reported by the pwsci. most pwsci said they ‘almost always’ inspect their skin for redness or skin breakdown (n = 19, 53%), are careful not to bump their buttocks during transfers (n = 30, 83%) and are aware of the condition of their wheelchair and cushion (n = 22, 61%). we found that the least common shcs in this study were associated with good health behaviours. following good health behaviour in terms of burns and contracture prevention yielded low presence of these specific shcs. this may suggest knowledge on what to do (and what not to do) may assist pwsci in performing good health-benefiting behaviour. this study did not find any association between participating in ltpa and qol, which is in contrast with findings by tomasone et al. (2013). they found overall ltpa to be positively associated with physical, psychological and social qol. almost half of pwsci in our study did not engage in ltpa, similar to findings by martin ginis et al. (2010) and only 31% (n = 11) occasionally performed strength exercises. our results are not surprising, as pwsci have been found to comprise one of the most inactive population sectors in society (arbour-nicitopoulos, martin ginis & latimer 2009). this may suggest that pwsci may perceive their physical limitations as barriers to ltpa, and would rather not attempt ltpa despite the benefits of participating in ltpa, which include increased strength and flexibility. for pwsci, the achievement of physical goals may lead to a more positive subjective qol and greater satisfaction with physical ability. although the majority of pwsci in our study did not perform strengthening exercises and ltpa, 53% (n = 19) always performed rom exercises. we also found that pwsci who were dissatisfied with their friends’ support did not adequately perform rom exercises. this was an interesting find, as it suggests that motivation to perform exercises necessary for joint health is associated with external motivation from people who do not reside with pwsci. suzuki et al. (2007) found that the presence of shcs is not only related to demographic and personal factors but also to the availability of emotional support. this then suggests that less social isolation and more interpersonal support would be anticipated to lead to fewer shcs owing to social supports’ positive correlation with qol. our findings are thus in line with suzuki et al. (2007), as we found that pwsci with good social support system try to reduce their risk of heart disease. social support is usually associated with the feelings of being cared for, or protected. having social support for pwsci means increased opportunity for social activities and connection with friends and family. it is then not surprising that this study found that pwsci with increased social support also reported higher qol. this suggests that improved qol is not only dependent on the absence of shcs through improved health behaviour but also on improved social relationships through social support. as such, interpersonal support will then directly help people with shcs to effectively manage circumstances related to their sci (suzuki et al. 2007). practical implications this study has increased the amount of literature in south africa on the problem of shcs in pwsci. this study has further identified the shcs most experienced by pwsci, thus enabling rehabilitation health professionals to focus on educating pwsci at risk of specific shcs on different shcs prevention measures. the specific shcs identified will assist rehabilitation health professionals to focus on addressing the specific factors that increase the risk of developing shcs as well as introduce ways to maintain good social relationships with family and friends of pwsci. this study determined which aspects of health behaviour influence the development of different shcs as well as the impact shcs have on qol in pwsci residing in south africa, thus bridging the literature gap. the information gained will be useful in developing programmes that may be implemented to prevent the development of shcs and in so doing improve the qol of pwsci. limitations of the study this study was hindered by the small sample size, where only 36 participants consented instead of the anticipated 60 participants. the study also focussed on pwsci that were discharged from a private rehabilitation institution, who resided in the cot metropolitan area. there is a possibility that pwsci from a different metropolitan area in another province may present with different results. furthermore, the possibility exists that pwsci from a government rehabilitation institution may present with different health behaviours, shcs and qol owing to different reasons. despite the abovementioned limitations, this study adds to the body of literature from south africa on the problem of shcs in pwsci. recommendations this study has revealed that there is a trend among health behaviour, shcs and qol in pwsci. this study can be broadened to include pwsci in other metropolitan areas, at both government and private rehabilitation institutions. further research is required to determine the factors that influence health behaviour as well as ways to improve the qol of pwsci through social relationships. conclusion engagement in health-benefiting behaviours was found to be associated with shc, qol and social support. participating in health-benefiting behaviour (with the help of a good social support system) can reduce the development of shcs and subsequently increase qol in pwsci. further research is required to determine the factors that influence health behaviour in order to develop strategies to increase health-benefiting behaviours. rehabilitation health professionals must maintain focus on minimising the development of shcs by providing specific education on good health-benefiting behaviour, as well as introducing social education to increase support from friends and family. acknowledgements the research in this article was based on phase ii of a dissertation submitted in 2016, in fulfilment of the requirements for the degree of master of science in physiotherapy. the dissertation was submitted in the faculty of health sciences, in the department of physiotherapy at the university of pretoria, south africa. competing interests the authors declare that they have no financial or personal 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sport and health science 1, 9–11. https://doi.org/10.1016/j.jshs.2012.02.002 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) armand bam stellenbosch business school, stellenbosch university, cape town, south africa marco bekker stellenbosch business school, stellenbosch university, cape town, south africa linda ronnie school of management studies, university of cape town, cape town, south africa citation bam, a., bekker, m. & ronnie, l., 2025, ‘workplace narratives of south african employees with multiple sclerosis’, african journal of disability 14(0), a1725. https://doi.org/10.4102/ajod.v14i0.1725 original research workplace narratives of south african employees with multiple sclerosis armand bam, marco bekker, linda ronnie received: 21 mar. 2025; accepted: 07 july 2025; published: 17 sept. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: workplace inclusion for employees with chronic conditions such as multiple sclerosis (ms) remains a challenge because of the episodic and invisible nature of symptoms, leading to stigma, disclosure dilemmas and inadequate accommodations. traditional approaches to disability inclusion often fail to address the lived realities of employees with ms, necessitating a deeper exploration of how individuals and organisations construct meaning around disability and inclusion. objectives: this study explores how employees with ms experience workplace inclusion, self-management and disclosure drawing on sensemaking theory and the social model of disability. the study also employs a reflexive approach, centring the voices of employees to generate actionable insights for employers and disability advocates. method: an exploratory qualitative research design was adopted involving semi-structured interviews with 13 employees diagnosed with ms in south africa. thematic analysis was used to identify patterns related to workplace adaptability, disclosure and support structures. researcher reflexivity was incorporated to acknowledge positionality and enhance the study’s depth. results: workplace adaptability, including flexible work arrangements and empathetic leadership, play a critical role in ensuring inclusion for individuals with ms in the work environment. however, disclosure remains a complex decision influenced by stigma and workplace culture. psychological safety and proactive organisational sensemaking significantly impact employees’ experiences. conclusion: for meaningful workplace inclusion, organisations must move beyond compliance-driven policies and foster an environment where employees with ms feel valued and supported. contribution: by integrating reflexivity, sensemaking theory and the social model of disability, this study offers valuable contributions to the discourse on disability inclusion. keywords: multiple sclerosis; disability inclusion; sensemaking; social model; reflexivity; south africa. introduction creating inclusive workplaces for individuals with chronic conditions such as multiple sclerosis (ms) has become a necessity for fostering equity, productivity and long-term employee well-being in the modern workplace (vitturi et al. 2023). multiple sclerosis is a complex autoimmune disease that is unpredictable in nature, characterised by the invisibility of its symptoms. despite medical advancements, individuals with ms are faced with the stigma of being high-risk employees. discrimination, inadequate accommodations and other barriers are exacerbated by the episodic nature of ms symptoms, which complicate conventional workplace structures and challenge traditional approaches to disability inclusion (ståhl, bjereld & dunér 2022). for most forms of disability, the decision of employees to disclose their disability to their employer presents dilemmas. in particular, employees with ms encounter barriers to their career progression and job security (shahbaz & parizad 2022), while employers’ approach to creating supportive environments call for more nuanced understandings of what constitutes meaningful inclusion (kruger & coetzee 2021). while research on workplace accommodations and disability policies has expanded in recent years (bishop et al. 2025), studies focusing specifically on the lived experiences of employees with ms remain limited within the global south and specifically in sub-saharan africa. this study addresses these gaps by exploring how individuals with ms experience workplace inclusion, address issues of self-management and their propensity for disclosure. drawing on sensemaking theory and the social model of disability, this study explores the ways in which individuals with ms construct meaning around their work experiences and how managers and their respective environments either enable or curtail their participation. a key element to this study is its reflexive approach, which acknowledges the position of the researchers while centring employees’ voices to arrive at actionable insights for employers and disability advocates. through this qualitative inquiry, we highlight the need for managers to increase awareness of ms and normalise conversations about disability to ensure an inclusive workplace for employees with ms. management of multiple sclerosis multiple sclerosis is a chronic neurological condition shaped by genetic, environmental and socioeconomic factors (koch-henriksen & sørensen 2010). as of 2023, over 2.9 million people worldwide were living with ms, with south africa reporting 4685 diagnosed cases (atlas of ms n.d.). symptoms range widely and include fatigue, visual disturbances, muscle weakness, sensory deficits and cognitive impairments (induruwa, constantinescu & gran 2012). clinical exacerbations, marked by sudden neurological deterioration, significantly influence disease progression and quality of life (qol) (schaeffer et al. 2015). while there is no cure for ms, disease management focuses on slowing progression, reducing relapse rates and alleviating symptoms. supportive strategies such as physical rehabilitation, mental health interventions and lifestyle modifications – including exercise and dietary adjustments – are essential for enhancing functional abilities and overall qol (vosoughi & freedman 2010). self-management is a vital strategy for enhancing the qol for individuals living with ms. it emphasises personal responsibility and proactive strategies for controlling symptoms and improving overall well-being. a key element of self-management is self-efficacy – the confidence in one’s ability to perform health-related behaviours – which has been shown to significantly impact health outcomes and psychological well-being (marks, allegrante & lorig 2005). daily self-management practices, such as engaging in regular exercise, monitoring symptoms and maintaining communication with healthcare providers, empower individuals to manage their condition effectively. effective self-management is essential in the workplace, helping individuals sustain employment and productivity. stress management techniques, including mindfulness and relaxation practices, reduce psychological distress while physical activity programmes and cognitive behavioural strategies provide structured support for managing work-related challenges (muñoz san josé et al. 2016; reynard, sullivan & rae-grant 2014; strober & arnett 2016). these multidisciplinary approaches integrate physical, psychological and social dimensions of care, empowering individuals with ms to lead healthier and more fulfilling lives (simpson, mair & mercer 2015; venasse, edwards & pilutti 2018). sensemaking theory, the social model of disability and multiple sclerosis sensemaking theory (weick 1995, 2005) and the social model of disability (oliver 2013, 2016) are complementary perspectives that can provide a framework for understanding how individuals with ms navigate workplace inclusion, self-management and disclosure. by illustrating how disability is socially constructed and how organisations can actively reshape their understanding of disability to foster inclusion, these theories shape the study’s analysis. sensemaking theory sensemaking theory (weick 1995, 2005) explains how individuals and organisations construct meaning in ambiguous and challenging contexts. applied to disability in the workplace, sensemaking provides insight into how individuals with ms interpret their experiences and how organisations react to disability disclosure, accommodation requests and employee support. a key tenet of sensemaking is that people create order through retrospective meaning-making, where they continuously reconstruct narratives based on prior experiences and social interactions (lee & mccormick 2002). for individuals with ms, this process involves weighing the risks and benefits of disclosure, interpreting organisational responses and navigating the evolving nature of their condition (pakenham 2008). for organisations, sensemaking plays a role in shaping policies, attitudes and structures that either facilitate or hinder inclusion (alvesson & jonsson 2022). in many workplace settings, disability is framed through a medical lens, wherein employees with chronic illnesses are perceived as requiring special accommodations rather than being valued as contributors to workplace diversity (bunbury 2019). this narrow interpretation reinforces ableist narratives that equate disability with deficiency. sensemaking theory suggests that organisations must actively reconstruct their understanding of disability, shifting from a reactive approach (merely accommodating employees with ms) to a proactive stance that normalises disability as part of workplace diversity. the social model of disability the social model of disability (oliver 2013, 2016) serves as a critical lens for examining how societal and environmental structures create disabling barriers for individuals with ms. rather than positioning disability as an individual impairment, this model argues that exclusion results from structural, attitudinal and organisational barriers that limit participation (barnes 2000). in the context of workplace inclusion, the social model emphasises that accessibility and equity should not be contingent on disclosure but rather embedded into organisational culture (bam 2025). by adopting this model, workplaces can move beyond a compliance-driven approach and focus on creating environments where individuals with ms can thrive without fear of discrimination. integrating the social model of disability with sensemaking theory reveals the importance of organisational culture and leadership in shaping disability inclusion. if workplaces perceive ms as a legitimate aspect of workforce diversity, rather than a problem requiring accommodation, they create conditions where employees with ms feel valued and supported. this perspective encourages organisations to shift from viewing disability as an individual burden to recognising their own role in fostering inclusion. applying the conceptual framework to workplace inclusion, disclosure and self-management the interplay between sensemaking theory and the social model of disability is particularly relevant when analysing key workplace experiences of individuals with ms: workplace inclusion: organisations construct meaning around disability based on their cultural norms and policies. the extent to which they engage in inclusive sensemaking determines whether disability is normalised or stigmatised. disclosure: the decision to disclose an ms diagnosis is shaped by how employees anticipate their workplace will interpret their condition. the risks of stigma and discrimination deter disclosure when organisations fail to create psychological safety. self-management: employees with ms develop self-management strategies to navigate fluctuating symptoms. however, these strategies are more effective when workplaces acknowledge invisible disabilities and proactively adapt workplace structures to accommodate diverse needs. using this conceptual framework, this study aims to explore the ways in which individuals with ms construct meaning around their work experiences in order to understand how employers and their respective environments either enable or curtail their participation. research methods and design this study adopted an exploratory qualitative research design to explore the lived experiences of individuals with ms in the workplace. the study’s exploratory nature aligns with its objective to uncover new insights into the complex challenges faced by individuals with ms, particularly in the context of disclosure, accommodations and inclusion. grounded in a social constructivist paradigm, the study emphasises how participants construct meaning through their interactions and experiences, reflecting the socially constructed nature of disability. constructivism, as articulated by jafari amineh and davatgari asl (2015), highlights that knowledge is created collaboratively, making it an appropriate framework for understanding how individuals with ms navigate their workplaces. the qualitative approach enabled an in-depth exploration of subjective experiences, allowing for detailed accounts of participants’ perspectives. this design was particularly suited to understanding the nuanced and individualised ways in which ms impacts workplace dynamics and how participants manage the challenges that arise. researcher reflexivity researcher reflexivity is essential in qualitative research, particularly when exploring sensitive topics (ide & beddoe 2024). reflexivity requires researchers to critically examine their own biases, assumptions and positionality throughout the research process to ensure the authenticity and credibility of the findings (jamieson, govaart & pownall 2023). in this study, one of the authors (a.b.) specialises in the research of the inclusion of people living with different forms of disability and applies a social justice lens to research. this perspective influences the study’s commitment to highlighting structural barriers, advocating for workplace equity and ensuring that participants’ voices are centred (townsend & cushion 2021). the second author (m.b.), is a person with ms and possesses a deeply personal understanding of the condition and its workplace challenges. the third author (l.r.) examines issues of diversity in the workplace from a management perspective and brings their experience, from both research and practice, to bear on the issue. this triad of positionality combined scholarly insights with lived experiences, which enriched the research process and required a conscious effort to balance advocacy with methodological rigour. the second author conducted the interviews and was mindful of how their personal experience with ms could shape data collection and interpretation. to manage this, reflexive note-keeping was used throughout the research process. after each interview, the author recorded immediate thoughts, emotional reactions and any assumptions that surfaced. these reflexive notes helped distinguish the participant’s narrative from the author’s internal responses. they were not treated as data but were reviewed during analysis to flag potential bias and ensure that interpretation remained grounded in participants’ accounts. the other authors were a critical sounding board and offered assurance in dedicated feedback sessions during data collection and analysis. in the debriefing sessions, the authors had the opportunity to articulate their personal realisations during the research process and to discuss any emotional or cognitive reactions that might influence interpretation. observations were captured in writing, engagements were conducted through socratic questioning to seek clarity, assumptions were challenged, evidence or reasoning for coding decisions were sought and alternative viewpoints of the experiences shared. through these discussions, the authors were able to surface blind spots, challenge assumptions and strengthen the trustworthiness of the study and maintain reflexivity and transparency across all stages of the research. the sessions also offered assurance and confirmation of what author two observed in relation to the transcribed interviews. engaging with participants who faced severe workplace challenges and progressive symptoms of ms prompted deep reflection on the second author’s condition and future trajectory. while he had managed his symptoms relatively well, hearing firsthand accounts of worsening health, workplace discrimination and forced career adjustments led to an acute awareness that he, too, might 1 day face similar struggles. this realisation was both unsettling and illuminating, reinforcing his connection to the participants’ narratives while also heightening the need for continued advocacy and systemic change (evans et al. 2017). at times, he found himself grappling with feelings of uncertainty and vulnerability, recognising that the challenges described in the study were not just theoretical but a possible reality for his own future (sherry 2013). despite this, he remained committed to ensuring that participants’ voices took precedence, using his positionality to foster trust while maintaining a critical distance in the analysis. this reflexive engagement strengthened the study’s depth, as the second author’s lived experience and newfound awareness contributed to a nuanced understanding of the urgency behind workplace inclusion efforts for individuals with ms. several strategies were employed to address positionality and enhance the study’s credibility. recognising the potential power dynamics between interviewer and participant, the second author fostered open, trust-based conversations, drawing on shared experiences, where appropriate, to encourage deeper engagement. the authors themselves maintained individual reflexive journals to document their assumptions and emotional responses to participants’ narratives, ensuring that analysis was guided by the data rather than pre-existing beliefs (jamieson et al. 2023). member checking was used to validate key themes by sharing these with participants, allowing them to confirm or clarify interpretations. in addition, an audit trail was kept documenting all research stages, ensuring coding and thematic development transparency. the research team also engaged in bracketing, consciously setting aside personal biases to allow participants’ voices to take precedence. participants participants were recruited through the ms society of south africa (western cape chapter) by leveraging their whatsapp support groups to distribute invitations. the organisation provided consent for this approach, which ensured access to individuals with firsthand experience of ms in the workplace. a snowball sampling strategy was also employed, allowing participants to recommend others who met the inclusion criteria. this method provided an effective way to reach a diverse group while building trust through established networks. to participate, individuals needed to be over 18 years of age, have been diagnosed with ms by a qualified physician for at least 3 years and be currently or previously employed in a full-time role. they were also required to be fluent in english, able to provide informed consent and have stable internet access for virtual interviews. these criteria ensured the selection of participants with comparable levels of work-related experience and shared challenges. individuals who were younger than 18 years of age, had only ever been self-employed or were unable to communicate fluently in english were excluded, as were those unable to provide written consent. from the 26 persons who responded to the call, 13 individuals met the inclusion criteria and agreed to participate. this sample size provided a robust basis for exploring diverse yet comparable experiences while allowing for a detailed, in-depth analysis of each participant’s narrative. demographic information was collected for all participants, and pseudonyms have been used to ensure confidentiality. data collection data were collected through semi-structured interviews conducted virtually using video calls or telephone, depending on the participant’s preference and technological access. semi-structured interviews offered the flexibility needed to explore participants’ unique experiences while maintaining a consistent framework across discussions. the interview guide was designed to cover key themes, including initial workplace inclusion, disclosure of ms diagnosis, accommodations and the broader challenges associated with navigating employment with ms. data analysis thematic analysis, as outlined by braun and clarke (2006, 2023), was employed to analyse the data from the transcribed interviews systematically. iterative, inductive coding was used to allow the themes to emerge directly from the narratives of participants, rather than pre-imposed categories. while coding was inductive, both sensemaking theory and the social model of disability served as guiding theoretical lenses in interpreting the data rather than as a priori coding frameworks. these theories informed the analytical focus by helping the researchers understand how participants made meaning of their workplace experiences (sensemaking) and how structural barriers shaped these experiences (social model). the theories were used post-coding to interpret and frame the emergent themes rather than to direct the initial coding process. the first step involved familiarisation with the data, where transcripts were read and re-read to immerse the authors in the participants’ narratives. this process allowed initial patterns and recurring ideas to emerge naturally. in the next phase, the data were systematically coded by identifying meaningful segments of text related to the study’s objectives, such as ‘barriers to inclusion’ or ‘impact of disclosure’. codes were then systematically grouped into broader themes that captured the central patterns across participants’ experiences. for instance, codes related to remote work, flexible schedules and task prioritisation were categorised under ‘workplace adaptability and disclosure’, reflecting the importance of workplace flexibility in managing ms symptoms. similarly, experiences of stigma, workplace culture and disclosure challenges were integrated into this theme. each theme was reviewed to ensure coherence and alignment with the raw data, refining overlapping or redundant themes for clarity. the themes were then clearly defined and named to accurately represent their underlying concepts, such as ‘support systems and ms challenges’, which encompassed the role of empathetic leadership, psychological safety, resilience, fatigue and workplace adaptations in fostering an inclusive work environment. finally, these themes were integrated into a cohesive narrative that highlights both the shared and unique experiences of participants. direct quotes were included to ensure that participants’ voices were authentically represented in the final analysis, reinforcing the nuanced challenges and strategies they employed in navigating the workplace with ms. trustworthiness to ensure the rigour of our qualitative research, lincoln and guba’s (1985) model of trustworthiness was used to give attention to the dimensions of credibility, dependability, transferability and confirmability. credibility was enhanced through prolonged engagement with the data and participants. interviews were conducted over an extended period, and follow-up interactions allowed participants to clarify or expand on their accounts. member checking was used to verify interpretations by sharing transcripts and preliminary findings with participants to ensure accurate representation of their narratives. to ensure dependability, a detailed audit trail was created that documented decisions throughout the research process, from interview protocols to coding steps and theme development. researcher triangulation was also used to strengthen dependability, limit individual bias and ensure a more comprehensive understanding of the participants’ experiences. all authors independently coded the transcripts, compared codes, discussed discrepancies and refined the coding frame through consensus. to support transferability, thick descriptions were used to provide contextual detail about each participant’s background, employment setting and disability experience. this allows readers to assess the applicability of findings to other contexts. to ensure confirmability, all analytic decisions and reflexive insights were recorded in a research journal. data interpretations were grounded in direct quotations from participants, and author triangulation reduced the influence of individual bias on theme development. ethical considerations ethical approval to conduct this study was obtained from the stellebosch university, social, behavioural and education research ethics committee (project no: 31339). all procedures followed established ethical guidelines as stipulated by the committee. written informed consent was obtained, and participants were fully informed about the study’s purpose, voluntary nature and their right to withdraw at any stage without consequence. confidentiality was strictly maintained, with data anonymised and pseudonyms assigned to protect participant identities. no financial compensation was provided, and all interviews were conducted in a private setting to ensure participant comfort and openness. transcriptions were securely stored on the university’s password-protected onedrive to ensure data confidentiality and integrity. given the varied nature of ms, ethical considerations prioritised individual autonomy over general assumptions about vulnerability. all participants were or had been employed and were capable of informed decision-making. ethical oversight focused on their abilities rather than broad disability-related perceptions. results the study participants included 13 people of varying demographics (in terms of age and gender) and experiences with ms (in terms of ms type, years since diagnosis and disclosure status) (table 1). the findings from the semi-structured interviews coalesced around two themes: workplace adaptability and disclosure, and support systems and ms challenges. multiple sub-themes emerged (table 2), which will be explored in detail. table 1: participant demographics. table 2: summary of interview themes and key findings. workplace adaptability and the challenge of disclosure the necessity for workplace adaptability emerged as a fundamental theme, encompassing both the structural flexibility required to accommodate ms symptoms and the challenges associated with disclosing a diagnosis in the workplace. traditional workplace structures often failed to account for the fluctuating nature of ms, where rigid schedules exacerbated symptoms such as fatigue and cognitive challenges. the findings indicate a shared recognition among participants that workplace flexibility – encompassing remote work, adaptable hours and the ability to prioritise tasks based on individual capacity – was not merely a preference but a necessary accommodation for managing their condition effectively. without such flexibility, productivity declined and individuals faced additional stress in managing their symptoms. jess (29, female, western cape) specifically raised the misalignment between the hours of her peak productivity and her employers’ expectations regarding her working hours: ‘when i take my nuvigil in the morning, that’s like my golden period until one o’clock … they prefer to schedule meetings with clients after hours. that’s not viable for me, by six o’clock, i can’t do it anymore.’ remote work was frequently cited as a key enabler of productivity and wellbeing. lauren (62, female, gauteng) could ‘operate at an optimal level when working from home’. the ability to have control over her work productivity rhythm was highlighted during the coronavirus disease 2019 (covid-19) pandemic when she was able to ‘get up at five o’clock in the morning’ and complete a day’s work before her actual office hours began. what she felt was key to the autonomy to make the decision to ‘stop for half an hour’ without feeling judged. in this way lauren and other participants could structure the day around their health needs. in turn, participants like emily (48, female, gauteng) felt that work-from-home options were a ‘blessing’ as she could ‘hide the physical side of it’. this was not the case when having to ‘go to the office … and find a way of walking without assistance’. she captured all the participants’ common experience of being ‘exhausted’ by having to conceal and ‘hide it’. workplace adaptability also came with challenges. participants who worked in isolation experienced a lack of support that also compounded their difficulties. jess (29, female, western cape) explained ‘working in complete isolation is … not suitable’ and posed a significant risk for the business if she had a ‘relapse and was admitted to the hospital [because] there was no support’, yet sick leave was ‘frowned upon’. the issue of disclosure was also closely linked to workplace adaptability. while disclosure could lead to accommodations and understanding, the risks of stigma and discrimination increased. emily (48, female, gauteng) hesitated to disclose her ms diagnosis because of concerns about being perceived as less capable or facing negative career consequences. she was ‘labelled the one that shouldn’t be touched … was stupid, and fat people get diseases like that because they don’t look after themselves’. this degradation led to the conscious decision to conceal further disclosure at her current employer ‘to try and avoid the hurt that comes with being labelled’. the visibility of jackie’s (36, female, western cape) symptoms compelled her disclosure as she wanted to avoid her ‘employer thinking something else is going on’. james (32, male, western cape) suggested it was ideal to have all his ‘ducks in a row and the best medical help’ and to keep his employer informed of what medication and treatment he was on giving them constant feedback on ‘how this is going to impact the organisation and myself’. the effectiveness of adaptable working conditions relied heavily on an environment that supported disclosure without fear of stigma. adam (47, male, western cape) considered that ‘disclosure built trust when it was met with support’. in other words, participants wanted organisations to create a culture supporting safety and accommodations in order to maintain their job security and professional reputations. support systems and multiple sclerosis challenges the role of support systems, both within and outside the workplace, was another central theme. participants emphasised that workplace culture, leadership attitudes and access to understanding colleagues impacted their ability to navigate employment successfully. empathetic leadership and open communication were identified as key enablers of inclusion, with managers playing a crucial role in shaping workplace attitudes towards ms. in karen’s case, the ‘entire office culture trickled down by that good manager … always willing to listen and willing to help and say, “okay, what can i do?”’ james (32, male, western cape) considered that in smaller organisations with limited support structures managers, needed ‘social and emotional intelligence’ calling for an ‘adaptive leadership approach’ and the understanding of what staff with ms would need. similarly, karen (41, female, western cape) supported the motion that it was emotional intelligence of leaders ‘that makes the difference between surviving and thriving’. the inclination to disclose was increased where participants felt ‘psychological safety’. chris (62, male, western cape) noted that he would feel a sense of being supported if his employers were open to ‘work through this and see what the best for me is as an individual’. community-based support groups were also essential in enhancing the employment experience, but chris wanted them to be ‘positive instead of showing the negative sides of ms’. fatigue and cognitive challenges were among the most difficult aspects of ms for participants to manage, significantly impacting their work performance and social interactions. unlike visible symptoms, these impairments were often misunderstood, leading to additional workplace challenges. jess (29, female, western cape) described it as more than just tiredness but ‘severe fatigue that impacts [your] ability to talk and think’. she also discussed her difficulty with memory and focus because of being ‘severely numb cognitively’. lauren (62, female, gauteng) also highlighted the mental health dimension of managing her ms, claiming mental health was not optional because ‘it’s the key to everything’. participants like jackie (36, female, western cape) developed their own coping mechanisms and because of her ‘cognitive issues’ she had to be alert and ‘immediately write down or type out’ what was transpiring or required in meetings otherwise she would forget the detail. while fatigue constrained participants physically, jackie was adamant that ‘cognitive challenges didn’t mean incompetence, it meant adaptation’. calling on better workplace support, paul (68, male, gauteng) was mindful that just because ms was invisible, it did not mean it was ‘non-existent’ and that his struggles were real and tangible, noting that ‘education on ms should be part of every company’s onboarding process’. participants showed remarkable resilience in overcoming systemic barriers; however, they grappled with feelings of self-doubt when faced with workplace limitations. jess (29, female, western cape) explained her disappointment as she had ‘studied for 8 years, earned a master’s degree, and now i’m doing admin work. it’s hard not to feel like i’ve lost part of myself’. while this was a shared sentiment for other participants. james (32, male, western cape) highlighted the power or purpose at the point when he was at his lowest: ‘[my] daughter was my reason to get up every morning. multiple sclerosis isn’t a death sentence; there’s still a life to live after the diagnosis’. discussion this study provides new insights into the workplace experiences of individuals living with ms, offering a nuanced understanding of how structural barriers, self-management strategies and organisational culture intersect to shape their professional trajectories. the findings contribute to existing literature on disability and employment by centring the voices of individuals with ms and incorporating a reflexive research approach that enhances the depth and reliability of the analysis. by integrating sensemaking theory and the social model of disability, the study broadens conventional discussions on workplace accommodations, demonstrating how organisations construct and reconstruct their understanding of disability and inclusion. sensemaking, workplace adaptability and disclosure the study contributes to the literature by integrating sensemaking theory (weick 1995, 2005) and the social model of disability (oliver 2013, 2016) to explain how individuals with ms and their employers construct meaning around disability, disclosure and accommodations. the decision to disclose emerged as one of the most complex challenges participants face, as it requires navigating personal, organisational and societal interpretations of ms. consistent with previous research (reed et al. 2017), findings show that individuals weigh the potential benefits of disclosure – such as receiving accommodations and fostering trust – against the risks of stigma and discrimination. from a sensemaking perspective, workplace disclosure is not merely an individual decision but a socially constructed process, shaped by organisational culture and leadership attitudes. participants described comfort with disclosure when clear organisational support structures were in place, reinforcing the idea that disclosure outcomes depend on how well organisations engage in inclusive sensemaking. this echoes clair, beatty and maclean (2005) argument that disclosure should not be framed as a ‘risk’ borne by employees alone, but as a process that organisations must actively facilitate through psychological safety and transparent accommodation policies. workplace adaptability also emerged as a critical but underutilised factor in promoting employment retention for individuals with ms. participants emphasised the necessity of flexible work arrangements, aligning with muñoz san josé et al.’s (2016) finding that autonomy in work schedules significantly improves employment retention for individuals with chronic conditions. however, as some participants explained, flexibility alone is insufficient if organisations do not actively challenge ableist narratives that equate legitimacy with visibility when it comes to disability. by framing these workplace challenges within sensemaking theory, this study highlights that organisations must not only implement accommodations but also reshape their collective understanding of disability. this also corresponds to the social model of disability, emphasising that barriers exist not because of individual impairments but because of workplace cultures that fail to adapt to diverse needs (oliver 2013, 2016). fatigue, cognitive challenges and psychological safety this study reinforces the importance of psychological safety in shaping the workplace experiences of individuals with ms. participants repeatedly emphasised that supportive leadership, open communication and emotionally intelligent managers significantly impacted their ability to navigate employment because they set culture. this finding concurs with edmondson’s (2018) research on psychological safety, which demonstrates that employees are more likely to disclose challenges and seek support in workplaces where trust is embedded in organisational culture. the impact of fatigue and cognitive challenges also emerged as a major workplace barrier, reinforcing previous findings (reynard et al. 2014) that ms-related fatigue is often misunderstood or dismissed by employers. participants described how their fatigue affects all aspects of their lives, underscoring how neurological impairments can be invisible in workplace settings. the findings suggest that existing workplace accommodations tend to focus on physical accessibility rather than cognitive and energy-related accommodations, leaving individuals to self-manage their challenges without institutional support. from a sensemaking perspective, these findings highlight the need for organisations to engage in a more nuanced understanding of disability. rather than perceiving ms-related fatigue as an individual performance issue, workplaces should reframe their approach to inclusion by integrating education on invisible disabilities into managerial training and onboarding processes (venasse et al. 2018). this aligns with the broader shift in disability inclusion literature, which calls for policies that anticipate rather than merely react to employee needs (thompson et al. 2022). expanding the literature through reflexivity and positionality researcher reflexivity played a crucial role in strengthening the credibility and depth of this study, particularly in acknowledging the positionality of the research team. the first author’s expertise in disability inclusion and social justice shaped the study’s emphasis on structural and policy-level barriers, ensuring that the research did not individualise workplace challenges but rather situated them within systemic inequities. the second author’s lived experience with ms brought an additional layer of depth, facilitating an environment of mutual trust during interviews and allowing for deeper engagement with participants. the third author’s expertise and experience with organisational behaviour and people management ensured that diversity and workplace inclusion were approached and analysed from a managerial perspective. this approach concurs with finlay’s (2002) perspective on reflexivity as a means of enhancing research transparency and acknowledging the researcher’s influence on knowledge production. by maintaining reflexive journals, engaging in ongoing discussions about researcher bias and employing bracketing techniques, the study mitigated the risk of preconceived notions shaping the analysis. this methodological rigour contributes to the broader disability research landscape by demonstrating how lived experience and scholarly expertise can coexist in research, leading to richer, more authentic insights. in addition, the second author’s realisation that he might eventually face the same workplace struggles as the participants introduced an autoethnographic element to the study, reinforcing the personal and evolving nature of disability experiences. this echoes the work of ellis, adams and bochner (2011), who argue that personal narratives in research can serve as powerful tools for understanding complex social phenomena, particularly in disability studies. by integrating both scholarly distance and personal connection, this study offers a model for future research that values both empirical rigour and researcher introspection. contribution and limitations by integrating reflexivity, sensemaking theory and the social model of disability, this study offers valuable contributions to the discourse on disability inclusion. using researcher reflexivity and positionality, this study demonstrates how lived experience and scholarly analysis can come together without compromising methodological rigour. the deliberate engagement with reflexivity ensures that the complexities of researching chronic illness in the workplace are acknowledged, allowing for a more nuanced and authentic representation of participants’ experiences. by recognising the interplay between personal bias and academic objectivity, the study strengthens the qualitative research process, offering a model for future inquiries into disability and employment. the application of sensemaking theory provides a novel framework for understanding disclosure dilemmas, organisational culture and workplace inclusion. rather than viewing disclosure as an individual act, the social model of disability emphasises the collective process through which employees and employers construct meaning around disability. by examining how workplace policies and leadership responses influence the decision to disclose, this study extends previous research on disability in employment, offering insights into the social and organisational factors that shape these experiences. a critical takeaway is the need for organisations to move beyond surface-level accommodations and engage in meaningful dialogue that reshapes workplace narratives around disability. findings suggest that workplace policies must transcend compliance-driven approaches and actively foster inclusive sensemaking. managers and leaders must, themselves, have awareness of the full range of disabilities their employees may experience, especially invisible disabilities, and the challenges associated with them. managers need to normalise conversations about disability and chronic illness within organisations to create environments where disclosure is met with understanding rather than scepticism. anticipatory accommodations, rather than reactive measures, can support employees in managing their health while maintaining their professional contributions. by shifting organisational narratives and embedding disability inclusion into workplace culture, companies can create a more supportive and sustainable work environment for individuals with ms and other chronic conditions. future research should explore how inclusive sensemaking evolves over time within organisations and assess whether managerial training interventions can shift workplace attitudes towards chronic illness. longitudinal studies tracking the career trajectories of employees with ms would provide further insight into how workplace accommodations impact long-term employment outcomes. as this study only included participants from two provinces, the findings may not be transferable to other regions. future research should expand the participant pool to include employees with ms from across south africa. as organisations strive for greater inclusivity, ongoing research will be essential in ensuring that disability inclusion moves beyond policy rhetoric to become an embedded and lived reality within the workplace. conclusion this study provides a reflexive, theory-driven and empirically grounded exploration of the workplace experiences of individuals with ms. by integrating the social model of disability, sensemaking theory and researcher reflexivity, it offers a multidimensional perspective on disclosure, accommodations and inclusion. as the social model of disability stipulates, organisations play a pivotal role in constructing and reconstructing understandings of disability. the findings of this study emphasise that inclusive workplaces require more than just structural adjustments if they demand a shift in how disability is understood and valued within organisations. leaders, managers and employees collectively shape workplace culture through policies, attitudes and interpersonal interactions. inclusive sensemaking requires organisations to actively challenge ableist assumptions and create environments that prioritise dialogue, flexibility and structural accessibility. this involves training managers and employees to recognise the fluctuating and invisible nature of ms, moving beyond legal compliance to foster proactive inclusion, and creating clear, supportive policies for disclosure that reduce stigma. in addition, it requires encouraging the co-creation of policies with employees with ms to ensure their lived experiences inform workplace structures. through active sensemaking, leadership engagement and proactive policy development, workplaces can move beyond accommodation towards genuine inclusion, ensuring that individuals with ms feel supported, valued and empowered to thrive within organisations. acknowledgements the authors would like to thank sarah boyd for her editorial assistance. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.b. and m.b. conceived the idea. m.b. collected the data. all authors were involved in the data analysis process. l.r. drafted the manuscript. the final version of the article was read and approved by all authors. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are not openly available because of data containing potentially identifying or sensitive participant information. requests for further disclosure can be directed to aden williams aden@sun.ac.za stellenbosch business school departmental ethics committee officer. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder or agency or that of the publisher. the 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eric badu department of community health, center for disability and rehabilitation studies, kwame nkrumah university of science and technology (knust), ghana maxwell p. opoku department of community health, center for disability and rehabilitation studies, kwame nkrumah university of science and technology (knust), ghana seth c.y. appiah department of sociology and social work, kwame nkrumah university of science and technology (knust), ghanabadu3eric@gmail.com citation badu, e., opoku, m.p. &yaw appiah, s.c., 2016, ‘attitudes of health service providers: the perspective of people with disabilities in the kumasi metropolis of ghana’, african journal of disability 5(1), a181. http://dx.doi.org/10.4102/ajod.v5i1.181 original research attitudes of health service providers: the perspective of people with disabilities in the kumasi metropolis of ghana eric badu, maxwell p. opoku, seth c.y. appiah received: 14 jan. 2015; accepted: 08 sept. 2015; published: 16 aug. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract introduction: awareness of disability issues has gained considerable interest by advocacy groups in recent years. however, it is uncertain whether attitudes and perceptions of all service providers and society have adjusted accordingly towards the health care of people with disabilities. this study sought to examine the attitudes of health providers from the perspective of people with disabilities in the kumasi metropolis. methods: a cross-sectional study using semi-structured questionnaires was conducted with people with disabilities (with physical, hearing and visual impairments,) in the kumasi metropolis. the study used a multi-stage sampling involving cluster and simple random sampling to select 255 respondents split amongst the following five clusters of communities; oforikrom, subin, asewase, tafo and asokwa. data were analysed using stata 14 and presented in descriptive and inferential statistics. results: the study found that 71% of the respondents faced some form of discrimination including the use of derogatory remarks, frustration and unavailable required services on the basis of their disability, the type of services they need and the location. women were 3.89 times more likely to face discrimination; adjusted odds ratio (aor) = 3.89 (95% confidence interval [ci]; 1.41, 10.76), and visually impaired was more likely to be discriminated at the facility compared with physical disability; aor = 5.05 (95% ci; 1.44, 17.65). however, respondents with some educational qualification and those who stayed with their family members were less likely to face discrimination; aor = 0.08 (95% ci; 0.01, 0.39). conclusion: the study recommends the provision of in-service training for service providers to update their knowledge on disability issues and improve access to services for people with disabilities. introduction in most developing countries around the world, people with disabilities people with disabilities may feel reluctant to access health services although they may have serious health problems that require health service intervention (shaikh & hatcher 2005:51). this is because of their experiences from previous attempts to access health services, particularly the attitudes and perceptions of health care providers. therefore, patients’ ability to accept and utilise services has a relationship with service providers’ attitudes (d’ambruoso, abbey & hussein 2005; jones et al. 2008; shaikh & hatcher 2005, 2007). the attitudes towards people with disabilities have been identified as stigma, for example, stereotypes, wrong perceptions and the use of abusive and discriminatory words (iezzoni 2011). this may limit them from accessing health care compared with the non-disabled population. the stigma and use of abusive words is mostly experienced amongst women with disabilities and make them more vulnerable than their male counterparts (aunos & feldman 2002). women with disabilities are most likely to experience stigma relating to marital and reproductive life. for instance, as a result of parenting difficulties, most service workers and families of people with disabilities, particularly with intellectual disabilities, strongly support sterilisation of females with disabilities despite the concerns over the years to ban involuntary sterilisation (aunos & feldman 2002). most health professionals may seem not to bother about people with disabilities at the health care setting and do not see the need to give them special attention. for instance, doctors in particular seem to have limited time to attend to patients and may not have special time for people with disabilities (jones et al. 2008). this is most likely to happen in developing countries where there seems to be limited doctors attending to large number of patients. most often than not, the genesis of the attitudes and perceptions towards clients with disabilities originates from the training institutions to the field of practice (jones et al. 2008). research has found that attitudes of health professionals are affected by low motivation, inadequate service providers and limited education on disability issues (witter, kusi & aikins 2007). a study on the views of undergraduate physiotherapy students in malawi found that whilst some students ‘empathised’ with people with disabilities, others revealed they felt uncomfortable when dealing with them (amosun et al. 2013). the study therefore concluded that these negative attitudes and perception may have an effect on rehabilitation services that would be offered to people with disabilities when such medical students are attending them (amosun et al. 2013). another study on community-based rehabilitation (cbr) programme of the university of philippines, manila, found that the programme has improved the skills of disability-related issues, values and attitudes of the students. this improvement is, therefore, believed to reflect on their services as field practitioners (magallona & datangel 2012). education of students in various institutions will improve their knowledge of stigma attached to issues of disability. the studies by amosun et al. (2013) together with that of magallona and datangel (2012) posit a strong case on the positive attitudes of health workers towards people with disabilities; yet they only focus on students. singer (2012), however, found that school nurses face challenges when working with children with disabilities. some of these challenges range from difficulty in communicating with the children, conducting health assessments and screening students. these challenges make nurses feel less comfortable and have negative attitudes when working with children with disabilities. the perception usually emerges because of a lack of experiences and limited knowledge on disability-related issues. white and olson (1998:128) found that in an effort to ensure that nurses show positive attitudes towards people with disabilities, age, area of practice and length of practice are not important factors. however, evidence (kroll et al. 2006) shows that educational level plays a major role to promote positive attitudes. in order to encourage positive attitudes towards people with disabilities, disability-related courses should be incorporated into the training curricula (kroll et al. 2006). field practitioners should also be equipped with disability knowledge and skills through in-service training. findings by flatt-fultz and phillips (2012) suggested that providing training for health service providers through videos may improve their knowledge on disability issues and change their attitudes. attitudes and behaviour of primary health care providers have been identified as a barrier for people with disabilities as they seek health care (jones et al. 2008) and this has become problematic in developing countries including ghana (mensah et al. 2008). however, not much is known within the ghanaian setting about the attitudes of health care workers towards people with disabilities. the results of such a study can be used to inform policy makers and other stakeholders. this article seeks to examine the attitudes of health care providers from the perspectives of people with disabilities in the kumasi metropolis in ghana. brief history of disability in ghana in ghana, the recognition of people with disabilities started after the establishment of a rehabilitation unit at the 37th general military hospital in accra between 1943 and 1947. the rationale of the programme was to reintegrate african soldiers with disabilities after the second world war into the workforce. this programme was later handed over to voluntary service organisations in 1947. the government in 1950 absorbed the voluntary sector and took over the practical aspect of the work, leaving voluntary sectors to advocacy (grischow 2011). in 1960 a massive registration programme was, however, launched in the country after ‘john wilson’ (grischow 2011) estimated that 100 000 ghanaians lived with some form of disability. this informed the government and led to the establishment of rehabilitation units and special education programmes to provide educational needs for people with disabilities all over the country. the rationale for this programme under first president kwame nkrumah’s administration was to integrate people with disabilities into the ghanaian workforce. the work of organisations dealing with disability established in the late 1960s contributed greatly to the formation of many disability movements later and to the present day (grischow 2011). again, in an attempt to fight discrimination against people with disabilities as they seek employment, legislative instrument (632) labour regulation was passed in 1969. the legislative instrument gave 0.5% quota to people with disabilities in all establishments. as part of this effort, offices were created in regions and districts to register and offer jobs to people with disabilities (the danish council of organisations of disabled people 2006). prevalence of disability in ghana worldwide, 15% of the population is estimated to live with some form of disability. this represents more than one billion people. the prevalence is higher in low income countries compared with developed countries (world health organisation [who] 2011). in every developing country, the prevalence is estimated at 10% to 15% (who 2013). this translates to about 2.4 to 3.6 million ghanaians living with disability. however, the 2010 population census found that the prevalence of disability in ghana is 3% which represents 737 743 people. the number of women with disabilities was 387 647 and that of males 350 096. the prevalence presented regional disparities where the ashanti region had the highest rate of disability whilst upper west had the lowest (ghana statistical services [gss] 2012). the rate of disability given by gss both at the national and regional levels falls below the who estimate of 10% to 15% in developing countries. however, the high population of people with disabilities in the ashanti region calls for more attention in research and policy circles. study design and methods the study used a cross-sectional design with quantitative method to examine the perspective of people with disabilities on health professionals’ attitudes towards their health care in the kumasi metropolis in ghana. study area the setting of this study was the kumasi metropolis of ghana, located in the forest zone covering a total land area of 254 square kilometres. the 2010 population and housing census found that the metropolis accommodates a population of 2 million people with an inter-censual growth rate of 5.4%. the metropolis has a total of 189 health facilities ranging from clinics to a teaching hospital. about 91% of the facilities in the kumasi metropolis are managed by private individuals. the metropolis has a doctor–patient and nurse–patient ratio of 1:41.606 and 1:7.866 respectively (gss 2012). the rate of national health insurance scheme (nhis) registration in the metropolis is around 81% (gss 2012; kumasi metropolitan assembly [kma] 2010) and makes health care arguably affordable in the metropolis. over 60% of outpatient department attendance (opd) are malaria cases making it a public health problem in the metropolis. it is, however, surprising that there is no available data on the number of people with disabilities who are enrolled into the nhis each year (gss 2012; kumasi metropolitan assembly 2010; mensah et al. 2008). the 2010 population census showed that the metropolis is divided into 10 sub-metros namely asokwa, asewase, bantama, suame, manhyia, oforikrom, tafo, nhyiaeso, subin and kwadaso (gss 2012). sample size and sampling the sample size was calculated by considering the proportion of the population in the kumasi metropolis who have some form of disabilities. the proportion of people with disabilities in the study area is estimated at 2.6% based on the gss 2010 census. the sample size was then calculated using this proportion of the population with significance level of 5%, allowing 0.03 degree of freedom, 10% non-response rate and design effect of 2. the total sample size was then estimated at 255 people with disabilities. the sample size was estimated using cochran’s sample size formula: where z = value (z): = 1.96 or 95% confidence level, p = prevalence of population, d = degree of freedom. (cochran 2007; naing, winn & rusli 2006) the study used a multi-stage process involving cluster and simple random sampling to randomly selected communities in the kumasi metropolis. this method was applied because the study area had many clusters of communities. firstly, the study randomly selected 5 clusters of communities (oforikrom, subin, asawase, tafo and asokwa) out of 10 clusters based on definition of sub-metro in the metropolis. the second stage sampling involved selecting people with disabilities (with physical, hearing and visual impairments) using simple random sampling. a total of 255 people with disabilities were selected which was split equally amongst the five clusters of communities, that is, 51 people with disabilities were selected from each cluster. the investigator and the research team used simple random sampling to select respondents. the research team zoned households and streets in the selected communities to identify prospective respondents. all people with disabilities were approached and the intent and procedures of the study were explained to them to enable them to freely decide whether or not to participate. people with disabilities were asked to pick from a box with ‘yes’ and ‘no’ papers. all people with disabilities who picked ‘yes’ in all the clusters, and consented, were enrolled. this was repeated to obtain the required sample size. the inclusion criteria was based on people with disabilities of 16 years and older, who stayed in the study area and accessed health care in the last 12 months within the metropolis. data collection and analysis the study administered a structured questionnaire to collect information from respondents. the questionnaire was developed in english but the interview was conducted in the respondents’ preferred dialect; english, sign language or asante twi. a professional interpreter volunteered to assist in the study. the data were collected over a period of two months (february to march 2014) to allow time to reach all participants. each participant spent approximately 40 minutes to answer the questions. the main dependant variable was perceived attitudes of health service providers whilst the independent variables were issues related to attitudes, including discrimination and knowledge on disability issues. result of the analysis was generated using descriptive and inferential statistics. data were summarized into frequency and percentage. tables and graphs were used to present the results. the data analysis involved the estimation of frequencies and percentages of background characteristics of respondents. the responses on the perceived attitudes of health professionals including discrimination, allowing time to ask questions and the rating of service providers’ knowledge on disability issues, were also presented in frequencies and percentages. crude odds ratios and a 95% ci were calculated and followed by adjusted odds ratio. respondents who did not experience discrimination when attempting to access health care were used as reference point for making comparison discrimination that people with disabilities received at health facility. significance was set at p-value of less than 0.01 and 0.05. the data obtained from the field were first entered into statistical package for social sciences version 20 and transported to stata version 14 for analysis. ethical consideration the study was conducted according to laws and regulations of the knust committee for human research publication and ethics. the committee reviewed and approved the study protocols prior to the implementation of the study. a written informed consent was translated and explained to potential study respondents in a language well understood by them prior to their enrolment in the study. results background information table 1 presents the background characteristics of 255 people with disabilities who participated in the study. the study was conducted amongst three different disability groups namely physically-, hearingand visually impaired persons in the kumasi metropolis. out of 255 people with disabilities, 50.6% were men. the mean age of the respondents was 38 years. in terms of education, a little above one-third of the respondents (34.5%) reported they had no formal education, 16.9% completed tertiary education, 15.3% had senior high school education, 16.9% junior high school, 16.1% primary level and 0.4% had post-secondary education. the study further found that the majority of the respondents (28.6%) were unemployed whereas the remainder were split amongst government/civil servants (11.0%), trading (15.7%), farming (11.0%), apprenticeship (21.6%) and (12%) otherwise employed, including private business owners. the majority (81.5%) of the respondents were christians. on the family status of the respondents, most respondents (85.1%) were staying with their family. table 1: background characteristics of respondents. percentage distribution of attitudes of health service providers narrated by people with disabilities themselves table 2 and figures 1–2 present results on the perceived attitudes of health providers towards people with disabilities at the health facility. on the question whether people with disabilities faced discrimination when they accessed health care, the majority of respondents (71%) disclosed they did, whereas the remained had a contrary opinion. on their ability to ask questions about treatment, 63% of respondents admitted that the service providers allowed them to ask questions when they did not understand treatment concerning their health care. again, the majority (58.8%) of respondents disclosed that service providers had enough time to explain their health condition for them to understand, whereas 41.2% admitted not to have experienced such a situation. more than 50% of respondents perceived the service providers’ knowledge on disability issues as limited. table 2: percentage distribution of perceived attitudes of health care providers towards people with disabilities. figure 1: basis for discrimination against people with disabilities. figure 2: forms of discrimination against people with disabilities. as shown in figure 1, respondents who faced discrimination gave reasons which were largely based on their disability (75.4%). respondents (12.8%) were also of the view that the physical location of the health facility away from their residency discriminated against them. figure 2 also demonstrates the forms of discrimination that people with disabilities faced when accessing health care. most of the respondents experienced delays in the process of health care delivery (49.2%), frustration from long waiting time at health care settings (42.5%), derogatory remarks (3.9%) and required services being not available. another 0.6% of respondents disclosed that health professionals were unconcerned when being treated at hospitals. in table 3, the influence of socio-demographic information on discrimination against people with disabilities is explored. there was an increase of the odds of being discriminated with the community of residents. those staying in subin were 4.64 times more likely to be discriminated against compared with those staying in oforikrom whilst those staying in tafo were 2.85 times more likely to face discrimination at the facility compare to those in oforikrom. women were more likely to face discrimination (or = 2.40, 95% ci; 1.63, 3.52) compared with men. the odds that respondents faced discrimination increases with age. those in the age group 31–40 were 2.56 times more likely to face discrimination compared with those below 30 years, whilst those between the ages of 41–50 were 3.33 times more likely to be discriminated at the facility compared to those below the age of 21 years. respondents with visual impairment were 2.14 times more likely to face discrimination compared with physical impaired persons. meanwhile, respondents who had some level of education were less likely to face discrimination at the facility compared with those with no formal education. people with disabilities who stayed with a family member at the time of the study were less likely to face discrimination at the facility (or = 0.20, 95% ci; 0.09, 0.41). table 3: logistic regression analysis of socio-demographic factors on perceived discrimination against people with disabilities. consistently, people staying in subin and tafo respectively were 5.2 times and 1.33 times more likely to face discrimination at the facility after the inclusion of other co-variates. also, women were 3.89 times more likely to face discrimination; aor 3.89 (95% ci; 1.41, 10.76), after accounting for the effect of other confounding variables. different age groups were consistently associated with being discriminated after adjusting for other co-variates. consistently, visually impaired people were more likely to be discriminated at the facility compared with physical disability after the inclusion of other co-variates; aor = 5.05 (95% ci; 1.44, 17.65). again, respondents with some educational qualification were less likely to face discrimination at the facility compared with those with no formal education after adjusting for other co-variates. respondents who stayed with their family members were consistently less likely to face discrimination compared with those who were not staying with their family members after the inclusion of other co-variates; aor = 0.08 (95% ci; 0.01, 0.39). discussions awareness of disability issues has gained considerable interest by advocacy groups in recent years. however, it is uncertain whether attitudes and perceptions of all service providers and society have adjusted accordingly towards the health care of people with disabilities. this article sought to examine the attitudes of health care providers from the perspectives of people with disabilities in the kumasi metropolis in ghana. this study found that most people with disabilities self-reported that they faced discrimination when they accessed health care. this suggests that health professionals might not have much experience seeing patients with disabilities. this finding corroborates previous studies where discrimination by health professionals limit people with disabilities from accessing health care compared to the non-disabled (iezzoni 2011; jones et al. 2008). the finding that people with disabilities faced discrimination further confirms previous findings where attitudes and behaviour of primary health care providers were barriers for people with disabilities as they seek health care (jones et al. 2008), in this study, delays in the process of services delivery, the use of derogatory remarks, frustration from long waiting times at health care centers and unavailable required services were the types of discrimination reported by people with disabilities. in a previous study, discrimination was, however, commonly related to stigma and the use of abusive words (iezzoni 2011). the study found women to be more subjected to discrimination at the facility than males. this could be attributed to the fact that most societies have cultural preferences for males (united nations 2003). some cultures perceive it as a waste of resources to help disabled women to become productive which consequently relegate them to the last priority. this finding might suggest that women with disabilities may, indeed, tend to stay away from health care to avoid repetition of experiencing stigma and discrimination as reported by fiduccia and wolfe (1999). again, the visually impaired were found to be the group more likely to face discrimination at the facility compared those with a physical disability. this finding implies that the varied needs of the visually impaired when accessing health care could incite health professionals to develop hatred and discrimination. despite the differences in discrimination, it was evident that respondents with some level of education were less likely to face discrimination at the facility compared with those with no formal education. this might indicate the respect health professionals have for educated individuals in the ghanaian society. the study found that respondents who stayed with their family members were consistently less likely to face discrimination, suggesting that the family members are likely to provide support at the facility and reduce the burden on the health professionals. although discrimination could either be experienced by both people with disabilities and the non-disabled, most people with disabilities perceived that they faced discrimination to health care based on their disabilities, type of health care accessed as well as the location of the services. this finding reinforce that people with disabilities might indeed face discrimination (iezzoni 2011). the discrimination experienced by respondents demonstrates the level of exclusion when accessing health care. the finding has the implication that the services offered to patients with disabilities are not friendly and make them feel disconnected from the health system. some health professionals appear not to have time and feel uncomfortable attending to clients with disabilities. the findings further confirm the notion that service providers might not have enough knowledge on disability issues. the perceived low level of service providers’ knowledge on disability issues may influence their attitudes towards people with disabilities’ health care as reported by jones et al. (2008). discriminatory attitudes, coupled with inadequate knowledge on disability issues amongst providers, may also lead to serious health disparities amongst people with disabilities as reported earlier in the study by iezzoni (2011). the observations established in this study reaffirm the need for improving issues and rights of people with disabilities in curricula for all service providers to avoid unnecessary discrimination against them. a study by kroll et al. (2006) has also suggested regular education on disability issues for health service providers. this could resolve some attitudinal barriers to health care amongst people with disabilities. this study found most people with disabilities attesting to the fact that service providers allow them to ask questions when they do not understand something concerning their health care. findings further suggest that service providers have enough time, and explain medical issues to people with disabilities. unlike the general population, people with disabilities require special attention at the facility. the realisation that professionals have time to respond to every question asked by people with disabilities will help to improve their health care. the finding also implies that although providers may have enough time for people with disabilities but, because of the discrimination attitudes exhibited, they may not value the time. it is necessary that the health professionals exhibit positive attitudes towards people with disabilities at the health facility. conclusion the study concludes that people with disabilities face discrimination at health care settings, such as delays in the process of service delivery, use of derogatory remarks against them, frustration and unavailability of service. it was evident that people with disabilities faced discrimination based on their disability, type of health care and the location of the service. the perceived discrimination experienced by people with disabilities at the health facility varied in terms of the socio-demographic information. the study concludes that women and visually impaired persons were the groups likely to be discriminated at the health facility; however, educated persons were less subjected to discrimination. this requires the need to invest much more into the education of disabled people. the study further concludes that people with disabilities in the kumasi metropolis perceived health care providers to have limited knowledge on disability issues. providers have, however, enough time to explain medical conditions to people with disabilities and allow them to ask questions concerning their health care. the study has an implication for policy actions to change the attitudes and knowledge level of professionals. it can therefore be concluded that in-service training should be organised for service providers to always update their knowledge on disability-related issues. acknowledgements the authors wish to thank the committee on human research, publications and ethics, kwame nkrumah university of science and technology (knust), for approving the study protocol prior to its implementation. they would also like to thank all the study participants for giving their time and contributing to the study. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions e.b. wrote 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organisation and world bank, geneva. world health organisation, 2013, disability and health, viewed 15 august 2013, from http://www.who.int/mediacentre/factsheets/fs352/en/index.html abstract introduction research methods and design results and discussion conclusion acknowledgements references about the author(s) riyona chetty department of medical orthotics and prosthetics, faculty of health sciences, durban university of technology, durban, south africa raisuyah bhagwan department of community health studies, faculty of health sciences, durban university of technology, durban, south africa nalini govender department of basic medical sciences, faculty of health sciences, durban university of technology, durban, south africa citation chetty, r., bhagwan, r. & govender, n., 2025, ‘the biopsychosocial effects of transtibial amputation: a south african perspective’, african journal of disability 14(0), a1404. https://doi.org/10.4102/ajod.v14i0.1404 original research the biopsychosocial effects of transtibial amputation: a south african perspective riyona chetty, raisuyah bhagwan, nalini govender received: 31 jan. 2024; accepted: 15 dec. 2024; published: 30 apr. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: a myriad of physical, psychosocial and environmental sequelae are associated with limb loss. however, there is a paucity of empirical south african data, which focusses on these sequelae, how they interface with the amputee’s quality of life as well as the challenges they experience following amputation. objectives: this study sought to explore the biopsychosocial effects of amputation and how it affected the quality of life of transtibial amputees. method: a qualitative approach guided this study. data were collected using one-on-one interviews with 14 unilateral transtibial amputees. data were analysed thematically. results: five broad themes emerged from the inquiry, which captured amputees’ experiences of phantom limb pain, body image disturbances and their challenges related to adapting to daily activities. participants also expressed the salience of familial support as well as the importance of psychological interventions to cope. conclusion: the findings suggested that support networks and professional psychological intervention are imperative in facilitating successful adjustment to the amputation experience. raising awareness of limb loss, in both rural and urban settings, may help reduce the stigma attached to it. contribution: quality of life comprises several domains, namely physical, psychological, environmental and social. however, limited local and international data exists regarding the environmental and social effects. this study brought to the fore the positive and negative effects of amputation in each domain, as well as various strategies, which facilitate successful adjustment to amputation. keywords: amputation; quality of life; biopsychosocial; phantom limb pain; support; feelings; body image. introduction the ability to stand, ambulate and run upright on two lower extremities is one of humanity’s defining physical characteristics, which enables humans to navigate their environment (farris et al. 2019:1645; handford 2018:1). hence, the removal of the lower limb because of a traumatic event or debilitating disease, significantly compromises the individual’s mobility and functional independence (boyd 2020:1; day, wadey & strike 2019:2435; handford 2018:1; mcdonald 2017:6). diabetic neuropathy, poliomyelitis, osteomyelitis, dysvascularity, malignancy, motor vehicle accidents, work-related traumas and infections are common reasons for lower extremity amputations (grzebień et al. 2017:57; khan et al. 2020:1437; knežević et al. 2015:103; matos, naves & araujo 2020:2). lower limb amputations are prevalent surgical procedures, accounting for an estimated 31.7% of traumatic amputations worldwide (hawkins et al. 2014:763; mcdonald et al. 2020:4). data from south africa indicate that transtibial amputations are the most prevalent type, as a result of complications arising from poorly controlled diabetes mellitus, followed by atherosclerosis and traumatic events (khan et al. 2020:1437; manickum, ramklass & madiba 2019:44; olotu & anderson 2019:10). irrespective of the cause, amputation of the lower extremity triggers salient psychological, environmental, vocational, physical and social sequelae, which may negatively affect the individual’s quality of life (gonçalves jnr., knabben & da luz 2017:98; knežević et al. 2015:103; mcdonald 2017:6). despite the range of challenges associated with adjusting to an amputation, the potential for psychosocial growth is reported (flinn 2016:11; godlwana & stewart 2013:48; jefferies 2015:29). hence, a well-designed, patient-specific rehabilitation programme combined with the knowledge, skills and expertise of the multidisciplinary team can help mitigate these challenges (magnusson 2014:31). according to the world health organization (who), quality of life can be defined as one’s subjective view of one’s own life in the context of the value systems and culture in which a person lives (knežević et al. 2015:103; the whoqol group 1998:1572). the degree to which one is comfortable, healthy and able to participate in or enjoy life events also contributes to one’s quality of life. this ambiguous phrase is multipronged and encompasses the physical, psychological, social and environmental domains (the whoqol group 1998:1572). each of these domains consists of facets that overlap, each contributing to one’s comprehensive quality of life. multiple challenges are associated with amputations. data emanating from studies conducted in england (washington & williams 2016:44), serbia (knežević et al. 2015:106) and india (srivastava & chaudhury 2014:4) suggest that amputees experienced feelings of depression and anxiety as well as having to embrace an altered body image. social discomfort was identified as another key experience in manchester (washington & williams 2016:49) and edinburgh (uytman 2014:15). noteworthy, phantom limb pain was reported as a common encounter by amputees in london (trevelyan, turner & robinson 2016:70), india (bhutani et al. 2016:10) and vojvodina (knežević et al. 2015:106) following an amputation. environmental barriers, financial burdens and poor access to healthcare services also contributed to altering the amputee’s quality of life, particularly in iran (abdi et al. 2015:1481) and vojvodina (knežević et al. 2015:104). activity restrictions, loss of independence and unemployment were additional challenges experienced by the amputees in india (bhutani et al. 2016:10) and ireland (coffey et al. 2009:1066). similar south african findings were reported in the eastern cape (manig 201879), kwazulu-natal (kzn) (ramkisson, pillay & sartorius 2016:4), western cape (ennion & rhoda 2016:565; yu & ennion 2019:3;) and gauteng (godlwana 2015:133; godlwana & stewart 2013:51) provinces. in south africa, amputations are known to be accompanied by the loss of independence (boyd 2020:1), unemployment, exorbitant medical bills and intolerable pain (abdi et al. 2015:1481). despite the assurance of having the right to access healthcare services being stipulated in section 27 of the constitution of the republic of south africa (south africa, department of justice 1996:11), there is still limited access to healthcare services, inconsistencies in resource provision and consequent lack of prosthetic services to amputees (naidoo & ennion 2019:102). this has subsequently led to the onset of depressive symptomatology in several amputees who consequently do not receive psychological support (amputee coalition 2020:para 1 line 5). environmental barriers comprise lengthy queues and travel distances especially from rural areas, exorbitant healthcare service and travel costs (naidoo & ennion 2019:98). often, the uninsured individuals and rural citizens are unable to afford the healthcare they require or are entitled to (naidoo & ennion 2019:96). this limited access to healthcare among amputees results in poor work performance and a reduced lifespan. there is a growing consensus that the lack of data regarding the quality of life following an amputation is a gap in south african literature (godlwana & stewart 2013:49). this study therefore sought to understand the biopsychosocial effects experienced by transtibial amputees and how it affects their quality of life. the findings are directed towards potentially offering motivation to current and future amputees. significance of the study the physical and psychological impediments of a lower limb amputation have been widely researched (amoah et al. 2018:2; godlwana & stewart 2013:50; paul 2018:2; roșca et al. 2021:2; varga & gallagher 2020:187; zhu et al. 2020:3). however, there is a paucity of local and international data regarding the environmental and social effects. this study seeks to close the gaps in literature by exploring how amputation is affected by each domain. gaining an understanding of the constituents attached to limb loss from the vantage point of the amputee will assist prosthetists in the dissemination of relevant information preand post-operatively regarding the prosthesis, the patient’s expectations and goals, as well as any other aspect of vital concern to the patient. there is potential that prosthetists will be encouraged to enhance the current education regarding the adjustment process that the patients experience as well as provide resources to current and future amputee patients. additionally, prosthetists can consider support regarding coping strategies, which will cater for a more holistic management structure. furthermore, this comprehensive understanding will assist the prosthetist to acknowledge the importance of referrals, to efficaciously provide quality patient care to individuals with limb loss and to improve accessibility of their services in rural areas (ennion & rhoda 2016:565; manickum et al. 2019:44). each of the aforementioned factors will contribute to the quality of life of amputees and assist prosthetists in improving their clinical expertise, thereby allowing prosthetists to establish a good rapport with patients. moreover, the findings have potential to encourage prosthetists to enhance the patient experiences regarding frequent prosthesis use, satisfaction and quality of life. the conceptual framework the quality of life of individuals with an amputation was positioned at the core of this study. therefore, the facets of each domain of quality of life played a crucial role in determining the most accurate conceptual model to guide this study. the facets incorporated in each domain of quality of life are illustrated in figure 1. figure 1: the different facets incorporated in each domain of quality of life, as described by the who (1996:5). the international classification of functioning, disability and health this research study was guided by the international classification of functioning, disability and health (icf), which is a universal language and conceptual foundation for the description and measurement of disability, developed by the who. the icf is a multidimensional model, which can be used as a powerful tool for research in the health sector, among other various purposes and uses in several different sectors (who 2013:1). the icf is a ‘bio-psycho-social synthesis’ as it was developed by the integration of the two main disability models: the medical model and social model (who 2013:5). the framework can be used to arrange and document material on disability and functioning. the icf definitions and categories are worded objectively to allow for both positive and negative aspects of functioning to be recorded (who 2013:5). the icf model (figure 2) is structured in two parts, which are further sectionalised (who 2013:7): figure 2: the international classification of functioning, disability and health model: interaction between the components. part 1functioning and disability: body functions and body structures activities and participation part 2contextual factors: environmental factors personal factors it is critical to note that the data respective to the above-mentioned entities must be collected independently and then explored for relationships between them (who 2013:7). the icf model, as illustrated in figure 2, was adopted as it provides a systematic, effective basis for explaining, understanding and examining health and health-related states, effects and causal factors (who 2013:6). the icf was only employed as a conceptual model for this study; the domains and facets were used to describe functioning without the utilisation of the particular icf codes or categories. the domains can be assumed as important sets of body functions, tasks, actions or areas of life, which capture a specific phenomenon or the experiences of an individual (who 2013:23). research methods and design it was imperative to the researcher that the anonymity and confidentiality of the participants are respected and maintained. specific measures were implemented to protect the identity and data pertaining to the participants as well as the data collected. the researcher created and allocated a random pseudonym for each participant, which was a combination of a numeric value and two letters of the alphabet. hard copy data were locked in the researcher’s home cabinet for the duration of the study. all the hard copy data will be shredded by the researcher after 5 years. electronic data were stored on the researcher’s laptop and encrypted. further, the electronic data will be destroyed by the researcher after 5 years. this is in keeping with dut research protocols. study design and setting when the research problem is clear, unambiguous and known or when factual data or probability information is required in psychological research, a quantitative research design is most appropriate (hammarberg, kirkman & de lacey 2016:498). the current study was devoted to acquiring insight on how individuals with limb loss make sense of the amputation experience; therefore a qualitative research approach was adopted. said approach is participant orientated as it is used to understand, explore and describe feelings and experiences (kothari 2004:3). qualitative research involves an interpretive naturalistic approach to its subjects (denzin & lincoln 1994:2). an advantageous element of a qualitative design is that a ‘bonding relationship’ is allowed to form between the researcher and the participants (alase 2017:9). this reiterates the study’s primary interest of obtaining a detailed understanding and interpretation of the human experience related to the psychosocial, environmental and physical challenges faced by amputees. these raw emotions can be richly received through a qualitative inquiry that allows the lived experiences of participants to be reflected in a descriptive style (alase 2017:10). the study was exploratory in nature, as it was undertaken to gain a deepened understanding of the essences of living with amputation. exploratory research was appropriate as it seeks to answer questions such as why, what and how (stebbins 2001:2). this study was conducted at one of the department of health’s facilities in the greater ethekwini metropolitan municipality, kwazulu-natal province. the medical facility in question has several departments that provide quality care and service to patients, namely dietetics, psychology, physiotherapy, mental health (psychiatry clinic), prosthetics and orthotics, family medicine and social work. also located at the facility is a sectioned-off institute established by the dut offering a work integrated learning programme for medical orthotic and prosthetic students. study population and sampling the sample was selected based on a specialised set of characteristics that they possessed, which in this case was a group of unilateral transtibial amputees. in the context of this study, unilateral indicates that a part of only one limb is amputated, and transtibial describes the amputation level that is through the tibia. participants were drawn from a list of transtibial amputees scheduled for appointments at the respective medical facility between august and september 2021. aligned with qualitative research approaches, a smaller sample was selected to attain information richness with regard to exploring the biopsychosocial effects of an amputation experienced by individuals with limb loss. the researcher used purposive sampling, which is a non-probability sampling strategy. the sample consisted of 14 transtibial amputees of whom 10 were males and 4 females. predominantly, there were eight black participants, followed by five indian participants and one white participant. recruitment was completed after data saturation was reached. data saturation is reached when there is sufficient data collected to replicate the study (fusch & ness 2015:1408), and the data no longer discloses new properties of the researcher’s core theoretical categories. if at this point not all the participants have been interviewed, they will still be interviewed for purposes of trustworthiness (dworkin 2012:1319). although an initial sample of 10 participants was identified, data saturation was not achieved. four additional participants were interviewed and thereafter when no further new themes emerged, interviews stopped. saturation was achieved at this point. recruitment and data collection the flyer, printed in english and in isizulu, was displayed at the orthopaedic department and provided pertinent details of the study. if the amputee wished to participate in the study, they contacted the researcher whose number was displayed on the flyer or informed their prosthetist. once contact was established, an interview date was set. because of coronavirus disease 2019 (covid-19), several patients chose not to attend their follow-up appointments. hence, the secretary in the orthopaedics department at the medical facility assisted in the recruitment of patients on the amputee database using the inclusion and exclusion criteria delineated for the purposive sampling of participants. the amputee participants were recruited based on the following inclusion criteria: unilateral transtibial amputee (long, standard or short), ages between 25 and 75 years, amputation surgery was performed before january 2018, regular use of the prosthesis over a period of 1 year and no symptoms of post-traumatic stress disorder. prospective participants were identified by the secretary via review of the amputation levels recorded in the medical profile, as well as by the prosthetist during the follow-up appointment. the secretary subsequently informed those who met the inclusion criteria of the study. the researcher telephonically contacted all consenting participants and arranged for a suitable interview date. all the participants were informed that the interview would take place either at their home or the medical facility. in addition, they were given the option of virtual interviews either through telephonic contact, a microsoft teams call or a whatsapp videocall. the researcher was not involved in the recruitment process, thus, mitigating self-selection bias. there were no participants that withdrew from the study or chose not to participate after reading the information letter related to the study objectives. the researcher was unaware if patients denied potential participation once asked by the prosthetist, as only those willing to participate were in contact with the researcher. semi-structured interviews were chosen as the appropriate data collection technique for the study because the intent was to understand the effects of amputation on the participants. the flexibility of this approach allows the researcher to discover or elaborate on material that may not have previously been thought of by the researcher (neuman 1997:33). the researcher conducted in-depth interviews over a period of approximately 2 months. all 14 participants were interviewed face to face; 10 were interviewed at the medical facility and 4 at the participants’ homes. the interviews were audio recorded and then manually transcribed by the researcher. data collection instruments the following research instruments were used during data collection, namely the researcher, an interview guide, an audio recorder and a reflex diary. the qualitative researcher methodically observes individuals and experiences with the purpose of discerning and learning about behaviours and communications in natural settings. such observation exemplifies the idea of the researcher as the key instrument of the qualitative inquiry. it entails going into specific settings and detailing and analysing what has been observed. this valuable method has been informative and insightful in health care settings (mays & pope 1995:182). as the researcher was the principal instrument, sufficient training, experience and careful preparation were undertaken prior to data collection to ensure researcher credibility (patton 1999:1198). an interview guide was used to collect data from the sample. formulated before the interviews, the guide comprised of a list of high-level topics and questions with which the researcher could direct the conversation (knight 2013:1). these topics centred on the research questions. the guide assisted the researcher to focus, organise their line of thinking and in what sequence to pose the questions (kennedy 2006:1). the interview guide used for the sample included an english and isizulu translation version. the guide included questions regarding preand post-operative activities, challenges faced while using the prosthesis, the patient-clinician relationship and the quality of the prosthesis. a reflexive diary is a valuable research tool that can be defined as a written or verbal personal record transcribed by the researcher. during the interviews, observations of participant emotions and reactions were noted in the reflexive diary that assisted the researcher in contextualising the participants’ experiences and enhanced the researcher’s understanding of the data. the researcher was aware of potential bias considering her professional background as a prosthetist. being acutely aware of this, the researcher did not allow this to influence data collection and analysis. as advised by berger (2015:231), the researcher continually self-reflected and constantly updated her position relative to the study and discussed this with the co-investigators and how it could influence the study findings. excerpts evidencing this are as follows: ‘my prosthetic background may drive me towards interpreting findings through this lens. i must remain cautious and take into consideration alternative explanations that may not align with my prior professional experiences. during coding of themes, i must continually seek feedback from my co-coders to ensure accurate interpretation of the data without influence of my personal biases.’ (chetty, female, 25) audio recordings are a simple and effective technique that provides the researcher with a record of the interview, which is a valuable reference when transcribing the interviews. the researcher is liberated from the distracting task of notetaking during the interview and can focus on interacting with the participant. an audio recording technique ensures a verbatim and accurate transcription of the interview (whiting 2008:37). considering these benefits, a digital recorder was used during the one-on-one interviews. the researcher obtained written consent from all the participants to audio record the interviews. data analysis thematic analysis was used to guide the analysis. it is the most common method for qualitative studies and focusses on identifying the recurring issues and main themes that emerge from the data obtained (braun & clarke 2006:78). the main themes should summarise all the views that the researcher has collected. thematic analysis offers a particularly flexible approach, which can be modified according to the needs of a research study, thereby providing a thorough and rich yet intricate report of data (nowell et al. 2017:2). this method was chosen because it provides a truly comprehensive analysis and ensured that the analysis did not only concentrate on the atypical extracts of the data (eds. bricki & green 2007:25). the following steps were completed to thematically analyse the data: step one: familiarisation with the data preliminary observations were made. this was particularly useful with the first few transcripts where the researcher was still trying to get a feel for the data. the transcripts were read and re-read. the researcher made notes and jotted down any impressions. step two: generating initial codes next, the data are organised in a meaningful and systematic way. the researcher utilised open coding, which implied that there were no pre-set codes. the codes were developed and modified as the researcher worked through the coding process. each segment of the transcript that was relevant or significant to or addressed the research question was coded. step three: searching for themes a theme is a pattern that captures something significant or interesting about the data and/or the research question. the researcher examined the codes to identify common and recurring themes that were generated in the study. the themes were predominantly descriptive, which meant that the described patterns in the data were related to the research question. the codes were either associated with one particular theme or more than one depending on the data collected. step four: reviewing the themes during this stage, the preliminary themes were reviewed, modified and developed. all the data relevant to each theme were gathered using microsoft excel. the researcher then considered whether the data associated with each theme supported it and then deliberated how the themes worked within a single interview and across all the interviews. step five: defining the themes in the final refinement of the themes, the aim was to identify what each theme was about. the researcher constantly and intensely scrutinised the themes and sub-themes. this deep level of total engrossment allowed the researcher to gain insight into the personal experiences of the participants by becoming thoroughly immersed in the data collected. further perusal of the themes and sub-themes generated, allowed the researcher to check for correlation within them. step six: the write-up finally, the researcher wrote up the analysis of the findings made (braun & clarke 2006:87). strategies used to achieve trustworthiness the four criteria of credibility, confirmability, dependability and transferability were used to ensure the trustworthiness of the study (guba 1981:80). credibility was achieved through triangulation. the researcher also ensured that all the participants’ experiences, including divergent responses, were respected and reflected in the presentation and analysis. according to shenton (2004:68), checking of data may take place at the end of the data collection or even at the end of each interview. member checking occurred after the interview session where the participants and researcher listened to the audio-recorded dialogue of the interview to allow the researcher to check that the participant’s responses were clearly understood. following the interview session, the participants and researcher listened to the audio recorded dialogue of the interview to allow the researcher to check that the participant’s responses were clearly understood. further, participants were able to consider whether their statements have been clearly and correctly communicated. this ensured that accurate transcriptions occurred. for the interviews with isizulu-speaking participants, the translator was present during member checking. a prosthetist colleague, not involved in the study, checked the researcher’s interpretations of the data to further ensure the credibility of the findings. confirmability was ensured through consistent maintenance and perusal of notes made in the reflexive diary, as well as established via an audit trail. this showed that the participants’ responses were accurately portrayed in the findings and highlighted each step of data analysis that was performed in order for a rationale to be provided for the decisions made (houghton et al. 2013:14). dependability can be established with inquiry audit, which entails an outside individual (auditor) reviewing one’s study to verify that results were consistent and authentic, and one’s study can be repeated (houghton et al. 2013:14). after data collection, the findings were presented to a prosthetist colleague to validate them. the primary investigator assigned codes to the data using the study’s conceptual framework and intercoder reliability (icr) as an essential guide and criterion to promote reflexivity within the research team, improving communicability and transparency of the coding process (o’connor & joffe 2020:11). themes were then developed from the codes. at each stage, the co-coders consistently cross-checked and validated the coding decisions that ensured coder reliability and increased the robustness of the coding. detailed and appropriate information pertaining to the study’s context, research methods and primary data was provided for the reader to evaluate the transferability of the findings. verbatim quotes from the participants were used to create a rich understanding of the context for the reader. to enhance transferability, a detailed presentation of the findings was produced. ethical considerations full ethical approval was obtained from the institutional research ethics committee (irec 119/20) at durban university of technology (dut) on 22 december 2022. all procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and in accordance with the 1964 helsinki declaration and its later amendments or comparable ethical standards. participants were made aware of two important facts, namely that their participation in the study was on a voluntary basis and that they could withdraw from the study at any point in time. written informed consent was obtained from each participant to ensure that they were fully aware of the details of the study and what was required in terms of their participation. no coercion was used during the recruitment. in addition, no psychological or emotional distress was inflicted on any participants during the interviews. the researcher was sensitive to the power they held during the research process and was hence respectful towards the participants. results and discussion five broad themes emerged from the data that captured the nuances of the adjustment to amputation and how the quality of life of individuals enduring limb loss was affected. participant responses illuminating the post-amputation effects are described under the following themes: phantom limb pain, psychological issues, adaptation to daily activities, familial obligations and responsibilities and stereotyping in society. theme 1: phantom limb pain the first theme that was derived from the data focussed on phantom limb pain: ‘i have phantom limb pain all the time. it is so painful and i even cry. it feels like someone is cutting me with a knife. the medication is addictive so it can’t help me.’ (ap12, male, 25) the amputees had different experiences with phantom limb pain depending on their level of pain tolerance and method of pain relief. participant ap12 felt the pain to be unbearable especially after learning that one of the side effects of his medication was addiction. hence, the pain may have been intensified by the participant’s frustration of not having an effective pain relief method. a study done in north carolina found that amputees felt the side effects of pain relief medication were worse than the phantom limb pain itself and therefore, no longer used the medication (paul 2018:11). another participant found beneficial home remedies to seek relief: ‘i still get phantom limb pain but not all the time. i splash cold water on the leg and it helps with the pain.’ (ap7, female, 74) participant ap7 indicated that colder weather temperatures would trigger the phenomenon. this sensation was corroborated by stockburger, sadhir and omar (2016:161) who pointed out that colder temperatures reduce peripheral blood circulation that could precipitate pain in the residual limb. participant ap14 stated that his phantom limb pain was exacerbated by delayed wound healing as a hindrance of poorly controlled diabetes: ‘i did have phantom limb pain and it felt like a ghost. the pain lasted for three years. as a diabetic, the wounds took long to heal so the pain was quite bad.’ (ap14, male, 71) spampinato et al. (2020:3) and patel et al. (2019:11) highlighted that poor wound healing was a common consequence endured by amputees with diabetes because of hyperglycaemia, reduced vascular circulation, neuropathy and impaired immune response. andjić et al. (2021:2) further stressed the importance of proper wound management in amputees with diabetes, saying it would drastically enhance their quality of life and decrease morbidity and mortality. current literature reflects that phantom limb pain is a common occurrence affecting a multitude of individuals post-amputation (fuchs, flor & bekrater-bodmann 2018:1; koleva, ioshinov & yoshinov 2017:3; münger et al. 2020:581; paul 2018:11). while a cure for this phenomenon is yet to be discovered, several strategies offer relief, namely range of motion exercises targeting the residual limb muscles in conjunction with residual limb massages, central nervous system stimulation (garcía-pallero et al. 2022:63), transcutaneous nerve stimulation, acupuncture, biofeedback (kaur & guan 2018:367–368; stockburger et al. 2016:162) and virtual reality therapy (herrador colmenero et al. 2018:297). theme 2: psychological issues this theme highlights the psychological trauma endured post-amputation. amputation has significant effects on mental health. limb loss is tantamount to the loss of a loved one and so is the grief process, as feelings of disbelief, shock and anger set in (össur 2017:7). this was apparent in the response of participant ap3 who reported that a part of her body was lost: ‘i felt like a part of my body was lost. i was sad and fearful because i was worried about how i was going to do things for myself … speaking to my friends and family really helped me to overcome those negative feelings of myself.’ (ap3, female, 62) these findings mirror those in a study conducted in nepal (järnhammer et al. 2017:1430). grieving is an essential component of coping with adjustment to the amputation (varga & gallagher 2020:187). furthermore, amputation is associated with the loss of independence, which stirs up feelings of depression, anger and frustration. such emotions are evident from the responses of several participants, namely ap1 and ap12, who felt like a burden to their families, which generated feelings of guilt, despair, worry and despondency in trying to cope with relying on their family members: ‘i felt low to rely on someone else because i have never needed to rely on someone before. it was difficult for me even though my family was very supportive.’ (ap1, male, 70) ‘i was very depressed … i just wanted to be alone, and i didn’t want anyone to see me because they will judge me and look at my amputation.’ (ap12, male, 25) in singapore, participants of a qualitative study stated that the amputation restricted their physical ability to fulfil their familial roles as spouse, parent and/or sole provider, which resulted in feelings of futility and incompetence (zhu et al. 2020:3). similar psychological distress was evident in studies conducted in ghana (amoah et al. 2018:2) and gauteng (godlwana & stewart 2013:49). considering individuals with limb loss no longer look the same as able-bodied individuals, the amputation can potentially disturb a person’s body image. if the amputee’s perception of themselves changes, it will influence how they believe they will be viewed by the public. as a result, self-esteem levels and participation in society are affected. according to montesinos-magraner et al. (2016:5), an altered body image and social restrictions are associated with depression and anxiety. one participant reported isolating from society in fear of how he may be perceived. most participants expressed feelings of reduced self-esteem and confidence levels and vulnerability through their responses. uncertainty of the future overwhelmed the participants as they communicated their doubts of the scope of their physical abilities and functional recovery. these findings were confirmed by those in studies performed in romania (roșca et al. 2021:4) and singapore (zhu et al. 2020:4). seeking professional guidance to cope with psychological distress helped participant ap10 to successfully adjust to the amputation. participant ap1 described how being resilient and having a positive mindset facilitated acceptance of the amputation: ‘i did not look at myself the same and was doubtful of whether i’d walk again … i used to go for counselling. it helped me to accept the amputation.’ (ap10, male, 53) ‘i was never embarrassed. being strong-willed helped me a lot.’ (ap1, male, 70) self-motivating and envisioning a positive future after rehabilitation to return to pre-amputation hobbies and activities can help amputees to regain a sense of normality (roșca et al. 2021:8). participant ap14 expressed gratitude for the amputation as it relieved the pain in that extremity: ‘i was never self-conscious of my amputation because i was in a lot of pain. i did not have time to worry about how others were looking at me. it did not bother me either.’ (ap14, male, 71) literature suggests that this response is not surprising as several individuals favour the amputation compared to the pre-operative wound, which is accompanied by debilitating pain (amoah et al. 2018:2; godlwana & stewart 2013:50). theme 3: adaptation to daily activities as evident in this theme, adaptations and adjustments had to be made in order for amputees to execute their daily tasks. modifications included the addition of a shower stool in order to reduce the risk of falling in the shower. altering the way in which one performs routine tasks can engender feelings of uncertainty, fear and uneasiness: ‘i have to shower while sitting on a chair … it is just different … i fell a lot in the bathroom and around the house, but i learnt to work slower and forget everything i knew before. you have to start fresh and adjust or adapt. if you get distracted, you may fall. i have learnt to even use my forehead against the wall to balance.’ (ap1, male, 70) jayakaran et al. (2019:121) confirmed these findings with participants in new zealand, who had handrails and anti-slip floors installed, and utilised shower stools in the shower as safety precautions to decrease the risk of falling and slipping. executing daily tasks had to be relearnt and required the amputees to be vigilant. lack of attentiveness could precipitate a fall (godlwana & stewart 2013:50). participant ap1 described how he uses his head to balance on the wall to provide stability and improve balance. similarly, participants of a study performed in gauteng, indicated that modifying the way in which they performed tasks mitigated their frustrations and the risk of falling (godlwana & stewart 2013:50). participants ap6 and ap5 communicated the use of assistive devices to mobilise on uneven terrains in their yards, transfer to and off the toilet seat and into the bath and/or shower: ‘i use the walker to go to the bathroom and toilet, to transfer to the chair and then onto the toilet. it is not difficult.’ (ap6, male, 70) ‘if i need to get into the car, i go up the driveway in the wheelchair first.’ (ap5, male, 56) assistive devices and mobility aids, namely crutches, wheelchairs and walkers, are commonly used to enhance the performance of daily tasks, reduce injuries and navigate their environment (de-rosende celeiro, sanjuán & santos-del-riego 2017:1803). ambulating on stairs is a challenging manoeuvre for amputees as it could precipitate a fall. for this reason, participant ap7 indicated that she is no longer able to fulfil her household responsibility of fetching water from the river because of the encumbrance of stairs: ‘i used to fetch water from the river but now there are too many stairs so i cannot.’ (ap7, female, 74) for individuals residing in rural areas, fetching water from the river is required for consumptions, domestic chores and personal hygiene. with an amputation, individuals would have to rely on other family members to takeover this responsibility (manig 2018:57). similarly, in romania, it was found that the lack of functional independence to perform daily activities and resume previous responsibilities engendered feelings of frustration, bitterness and anger (roșca et al. 2021:8). de-rosende celeiro et al. (2017:1804) suggested that rehabilitation programmes aimed at assisting amputees to perform activities of daily living post-operatively should be established as it will foster self-sufficiency and improve safety. theme 4: familial obligations and responsibilities one of the themes derived from the findings was familial obligations and responsibilities. the participants described the impact of receiving support from their family members and friends: ‘my family would always tell me that i am not alone, and i am only human.’ (ap8, male, 65) ‘i did feel like a burden in the beginning because they were doing almost everything for me. my wife and my daughter are my two crutches.’ (ap1, male, 70) some amputees may feel lonely post-amputation as their family members will not fully understand the gravity of the physical and emotional obstacles associated with amputation (paul 2018:10). as evidenced in the data, most participants received immense emotional and physical support from their families. participant ap1 described his wife and daughter as his ‘two crutches’, implying that they were his source of physical support when he endured physical challenges post-operatively. however, the lack of mobility of the amputees placed the load of additional responsibilities on family members, which left participant ap1 feeling like a burden. this is a common feeling reported in several studies (amoah et al. 2018:3; järnhammer et al. 2017:1432; roșca et al. 2021:8). the literature is replete with evidence of supportive family members and friends (godlwana & stewart 2013:51; stutts et al. 2015:749). a study in the united states (us) found that pets were valuable sources of support in helping the amputee participants to cope with the amputation (stutts et al. 2015:749). individuals with limb loss express great appreciation towards friends and family for the support received. in gauteng, the amputation was found to improve relationships between spouses or partners and/or their family members (godlwana & stewart 2013:51). participant ap4 stated that he acknowledged his family’s emotions and helped them to understand and accept his amputation: ‘they were ashamed in the beginning, but i spoke to them about it.’ (ap4, male, 40) manig (2018:79) emphasised that family counselling is crucial to educate and equip the family with coping strategies for the new household dynamics. in contrast, the amputation may place strain on some relationships especially when the amputees feel misunderstood or uncared-for by their spouses (stutts et al. 2015:749). some participants did not receive the support they expected from their family members which generated feelings of disappointment and sorrow. participant ap13 decided to prioritise her well-being and personal growth after feeling neglected by her family: ‘my family was quite supportive initially … i do feel lonely at times and that my family just abandoned me. but i have decided to put myself first.’ (ap13, female, 65) similarly, in singapore, participants felt displeased and angry towards their unsupportive family members (zhu et al. 2020:4). when amputees do not receive the familial support they initially expect, feelings of insecurity can arise, which requires that they receive professional assistance (uytman 2014:13). theme 5: stereotyping in society the final theme that emerged from the findings was stereotyping in society. the participants described the negative comments from individuals of the public: ‘sometimes people in public will call me names such as hop-a-long or hop-a-long cassidy.’ (ap2, male, 58) participants reported on the stigma attached to amputation from the encounters with some members of the public. participant ap2 was insulted and had demeaning words directed at him. despite the participant being unperturbed by the negative remarks, a clear indication of the stigma and discrimination that exists towards those with physical disability is evident. participant ap12 was driven into self-isolation as he felt embarrassed, inferior and self-conscious: ‘it made me feel like nobody will love me for who i am. initially their opinions affected me to the point where i never left my house but after some time you adjust and accept the situation.’ (ap12, male, 25) however, with time participant ap12 accepted his amputation and was able to positively re-integrate into society. the social stigma attached to amputation were also highlighted by amputee participants in singapore (zhu et al. 2020:4), spain (montesinos-magraner et al. 2016:5) and south africa (godlwana & stewart 2013:50). according to montesinos-magraner et al. (2016:5), isolating from public areas also reduces the chances of amputees starting and establishing romantic relationships. participant ap5 initially felt insecure and used clothing that masked his amputation: ‘people staring used to make me feel very self-conscious and aware. i started to only use long pants and jeans so that nobody would notice anything different … i stopped caring about what people thought … my mind was focussed on getting better and getting the prosthesis.’ (ap5, male, 56) shifting his focus from the constant stares of the public to obtaining his prosthesis instilled hope and enthusiasm. this echoed a response in another study, where the participant was unaffected by society’s opinion and rather more interested in receiving the prosthesis (zhu et al. 2020:4). while there are some facilities in public transport vehicles for individuals with disability, members of the public become antagonised and prevent amputees from using them. participant ap7 described how a member of the public in the taxi refused to give up the passenger seat for her: ‘amputations are quite popular so many people do not really take notice or get shocked … i do not have to wait in lines and that causes problems because the other people get angry. i get to sit in the front of the taxi or behind the driver and if someone is sitting there, they do not want to move.’ (ap7, female, 74) these facilities ensure the amputees safety and facilitate mobility. it reflects the insensitive and hostile nature of some individuals in society who lack understanding of the needs of amputees. participants in a study conducted by stutts et al. (2015:747) in the us also reported experiences of public discrimination. contrary to this study’s findings, the participants of godlwana and stewart’s (2013:50) study reported receiving sympathy from members of the public. a significant finding that emerged from the data was the unmatched support received from other amputees: ‘it also helped to have friends that were amputees, we were all going through the same things.’ (ap9, female, 45) evidence indicates that amputees become more content with life after receiving support from other individuals with limb loss or attending amputee support groups (williams 2016:104). participant ap14 indicated that he offers encouragement to and coping strategies with other amputees by sharing his experiences of adapting to and accepting the amputation: ‘i was a speaker at this one place for other amputees. i would encourage them and speak about my experiences. people treating me normally encouraged me to accept my amputation and be confident.’ (ap14, male, 71) several studies reflect the importance of amputee support groups, as the participants report having positive experiences that are quintessential facets of their adjustment process (stutts et al. 2015:750). the support groups mitigate loneliness and alleviate anxiety, depression and stress that subsequently enhances mental health (abu shawish et al. 2021:531). limitations while this study provided significant data regarding the quality of life of individuals with limb loss, it was not without limitations. the current study’s amputee participants resided in the urban regions of kwazulu-natal. further research should explore the biopsychosocial challenges experienced by amputees in rural regions. such data will provide insight into the specific rehabilitation services and care required and will enable the provision of these services in outlying areas to be operational. recommendations all orthopaedic surgeons should have a system in place in which the individual undergoing amputation and their family members receive resources, such as brochures or websites, providing information on living with amputation and interdisciplinary services available to them. moreover, psychologists and social workers should be incorporated into the care plan after surgery to provide psycho-therapeutic support. receiving psychological help will offer an avenue for the amputee to cope with mental distress while receiving professional guidance on how to successfully adjust to and accept the amputation. as evidenced by williams (2018:104), individuals with limb loss experience greater satisfaction with life after receiving one on one and group social support. therefore, physical disability support groups should be established in medical facilities throughout the country to promote psychosocial well-being. future research should focus on various coping strategies and new techniques for relief of phantom limb pain, vocational reintegration and how places of work can accommodate individuals with disability, enhancing rehabilitation programmes to provide holistic forms of care, improving transportation services to healthcare facilities for individuals with limb loss at no cost and establishing programmes to educate individuals with limb loss and their family members on the amputation experience inclusive of management strategies and appropriate healthcare services. conclusion this study explored the biopsychosocial effects of a transtibial amputation, which are illuminated through the diverse range of challenges amputees experienced post-amputation. phantom limb pain, limited functional mobility and adapting to perform daily tasks were among the main physical effects reported by the amputee participants. the findings indicate that losing a limb gives birth to several psychological issues, namely grief, a lack of independence, reduced self-esteem, body image anxiety, depression, self-isolation and fear of the future. the findings corroborate with those internationally and add to the limited body of knowledge in south africa related to amputation. the importance of psychological intervention and a strong support network was brought to the fore. while familial support facilitated the adjustment process, the amputees indicated that receiving support from other amputees would be unmatched in mitigating the various psychological effects. future research could bring in data on the experiences of the amputee’s support network and establish psychosocial programmes to educate, counsel and comfort the amputee and their carers. regardless of the challenges experienced, being resilient and having a positive mindset was reported to promote successful adjustment to the amputation. having thoroughly explored the biopsychosocial effects of amputation, a holistic wellness programme incorporating various tools can prove beneficial for future individuals with limb loss to receive as a mandatory care procedure. policy needs to be revised to ensure that post-surgery, medical facilities provide physical support to the individual and psychosocial support to them and their family members. the primary intention of the united nations convention on the rights of persons with disabilities (united nations general assembly 2007) is to protect, ensure and promote the full and equal enjoyment of all human rights and freedoms by individuals with disability and further to uphold their autonomy and dignity. this study recognised the stigma attached to amputation as some participants described that society often engaged discrimination, unwarranted hostility and excluding them. it is imperative that the general public become aware of amputation and its effects on amputees so as to ensure their reintegration into society. moreover, there should be educational campaigns hosted throughout the country specifically in rural areas, representation of individuals with disability in media in various settings outside of a disability context, promotion of receiving psychosocial support and media coverage of positive and fulfilling testimonies attached to life with an amputation. acknowledgements the authors thank the participants for their participation in the study and the kwazulu-natal department of health in south africa for granting permission to conduct interviews on one of their medical facility’s premises and to interview their patients with a transtibial amputation. this article is partially based on the author’s thesis entitled ‘the biopsychosocial effects of a prosthesis and the roles of prosthetists in improving the quality of life of transtibial’ towards the degree of master of health sciences in the faculty of health sciences, durban university of technology, south africa, july 2022, with supervisor prof. raisuyah bhagwan and co-supervisor dr. nalini govender. it is available here: https://openscholar.dut.ac.za/bitstream/10321/5193/3/chetty_r_2022.pdf competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions r.c., r.b. and n.g. made substantial contributions to the conception and design of the study. r.c. was responsible for the acquisition and draft of the analysis and interpretation of data. r.b. and n.g. aided in the analysis and interpretation of the results. r.c. was also responsible for drafting the work. r.c., r.b. and n.g. were involved in the final approval of the version submitted to the journal. funding information the authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: this work was supported by the ada & bertie levenstein masters scholarship and durban university of technology. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are 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hunt institute for life course health research, department of global health, faculty of health sciences, stellenbosch university, bellville, south africa christina laurenzi institute for life course health research, department of global health, faculty of health sciences, stellenbosch university, bellville, south africa sarah skeen institute for life course health research, department of global health, faculty of health sciences, stellenbosch university, bellville, south africa leslie swartz department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa phillip sundin department of biostatistics, ucla fielding school of public health, university of california, los angeles, united states of america robert e. weiss department of biostatistics, ucla fielding school of public health, university of california, los angeles, united states of america mark tomlinson institute for life course health research, department of global health, faculty of health sciences, stellenbosch university, bellville, south africa school of nursing and midwifery, queen’s university belfast, belfast, united kingdom citation hunt, x., laurenzi, c., skeen, s., swartz, l., sundin, p., weiss, r.e. et al., 2021, ‘family disability, poverty and parenting stress: analysis of a cross-sectional study in kenya’, african journal of disability 10(0), a744. https://doi.org/10.4102/ajod.v10i0.744 original research family disability, poverty and parenting stress: analysis of a cross-sectional study in kenya xanthe hunt, christina laurenzi, sarah skeen, leslie swartz, phillip sundin, robert e. weiss, mark tomlinson received: 09 apr. 2020; accepted: 28 apr. 2021; published: 10 june 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: households with a disabled member, be they a caregiver or a child, are poorer than households not affected by disability. poverty, caregiving as a person with a disability and being the caregiver of a child with a disability can lead to increased parenting stress. objectives: the objective of this study was to examine whether parenting stress experienced by caregivers in a household with a disabled member is greater when the disabled member is the caregiver, or the child, and how much of these respective relationships is explained by poverty. method: we collected cross-sectional data using a demographic survey, the washington group questions on adult disability, the 10 questions on child disability and the parenting stress index-short form, from 465 caregivers enrolled in a non-governmental child development programme in kenya. results: households with a disabled member were poorer than households without a disabled member. parenting stress of disabled caregivers was higher than parenting stress of non-disabled caregivers; however, this relationship disappeared when socio-economic status was controlled for. caregivers of disabled children were more stressed than caregivers of non-disabled children, and this effect was not explained by differences in socio-economic status. conclusion: our findings highlight the importance of developing a comprehensive understanding of the stressors facing households with a disabled member, particularly if that member is a child, so that supportive interventions can adequately cater to the needs of caregivers, and their children, in the context of poverty. keywords: poverty; parent child relationship; parenting stress; disabled children; child development; child rearing. introduction there is a well-established relationship between disability and poverty (emerson 2004; groce et al. 2011; mitra, posarac & vic 2013): disabled people are, on an average, poorer than non-disabled people. although the precise relationship between disability and poverty is complex and varies from one context to another, there is evidence that disability may lead to impoverishment, and that poorer people are more likely to become disabled (grech 2015; mitra 2017). this relationship is true in lowand middle-income countries (lmics), where disability is significantly associated with higher poverty (mitra et al. 2013; simeu & mitra 2019), lower educational attainment, lower employment rates and higher medical expenditures (mitra et al. 2013), as well as functional limitations (largely because of stigma and disabling environments) which make it difficult to attain the same standard of living as non-disabled people (trani et al. 2015). disability may also have a profound impact on household relationships and developmental pathways. the associations between disability and parenting stress are well established (anderson et al. 2007; dyson 1993; hassall, rose & mcdonald 2005; rodrigue, morgan & geffken 2005), although evidence suggests that many intervening variables may influence this relationship. for example, it may be the factors surrounding disability, such as discrimination and access issues, rather than impairments per se, which lead to stress. similarly, caregivers in poverty may experience more parenting stress than caregivers of higher socio-economic status (brody et al. 1994; raikes & thompson 2005; steele et al. 2016). what is less understood are the dynamics of parenting stress. for example, is increased stress experienced by caregivers of children with disabilities accounted for by the impact which disability may have on household income? or, do the impacts of disability – either of the caregiver or the child – and associated factors like prejudice and barriers to access on parenting stress go beyond that of economic impact? does this differ depending on who is disabled? answers to these questions have not been established in concrete (although past studies have found varying associations; see bannink, idro & van hove 2016; hassall et al. 2005; meppelder et al. 2015). the primary reasons that disability may lead to, or cement, poverty are threefold. disabled people may have lower earning capacity, they may have accommodation needs because of their disability which create associated costs, and they may require assistance and caring by other family members which can lower the household’s overall earning capacity (brown & emery 2009; meyer & mok 2019; montes & halterman 2008). poverty may lead to disability too; people living in poverty have less access to medical services than people of higher socio-economic status (lustig & strauser 2007) and may have poorer overall health (anderson et al. 1997; lochner et al. 2001) and increased risk of disability. disability is not an individual phenomenon, however, particularly as it relates to poverty (palmer 2011). the reduced capacity to earn, additional expenses incurred and the requirements for care of these households mean that families with a disabled member are likely to have a lower standard of living than households of similar means, without a disabled member. this is particularly the case in low-income countries, where formal welfare systems and caring support services and infrastructure are limited. in these contexts, social capital in the form of informal care networks may buffer some of the deleterious effects of disability on the household’s socio-economic status, but this is unlikely to be to the extent necessary to negate the impacts of poverty. families with a disabled member may not be able to yield as much social capital as other families, because of their relative lack of caring resources; their members are likely to be focused on the care of their own member, and less able to extend care to non-family members. as a result, these families may be at risk of social exclusion (narayan-parker & patel 2000), and so unable to access these networks. emerson (2004) notes that the experience of poverty is likely to be associated with poor caregiver health and well-being and consequently poorer parenting practices. caregivers of lower socio-economic status may experience more parenting stress than caregivers of higher socio-economic status (katz et al. 2007; silva et al. 2019), as certain dimensions of poverty such as material hardship and financial strain, and neighbourhood quality, contribute to high levels of stress amongst caregivers and may undermine their resilience to the ‘normal’ stresses of parenting (cassells & evans 2017). this is important because parenting stress is associated with poorer parenting practices, difficulties in the parent–child relationship and with poorer child adjustment (deater-deckard 2006). however, the strength of the relationship between poverty and parenting stress appears to be mediated by a variety of factors, including social support, trauma and parenting efficacy (raikes & thompson 2005; steele et al. 2016). still, when low socio-economic status is compounded by the effects of having a disabled member in the household in a context which does not provide adequate support for people with disabilities, this stress might be greater. both disabled caregivers and caregivers of children with disabilities are at risk of additional stress and may be in need of additional caregiving support (craig et al. 2016; hayes & watson 2013). however, it remains unclear whether the impacts of household disability on parenting stress differ depending on whether it is the caregiver or the child who is disabled, and how much of the relationship between parenting stress and disability is because of the relationship between disability and poverty. to begin to address these questions, in this study, we explore the relationship amongst disability, poverty and parenting stress in western kenya. specifically, we examine whether parenting stress experienced by caregivers in a household with a disabled member is greater when the disabled member is the caregiver, or the child, and how much of these respective relationships is explained by household income. understanding the relative role of income and socio-economic status in caregiving stress can help to inform policy and programming planning and design in lmic, and ensure that the needs of caregivers and children in households affected by disability are reflected in interventions. research methods and design study design we explored the relationship amongst disability, poverty and parenting stress using data from a large study of children enrolled in a parenting and early child development programme administered by plan international, an international non-governmental organisation working in western kenya. the study was not originally designed for this analysis. however, given high rates of child and caregiver disability in the survey data set, we decided to explore associations between disability and socio-economic status and parenting stress, based on prior literature, suggesting the possibility of such relationships. we collected baseline cross-sectional (i.e. correlational) data from caregivers of children enrolled in plan international’s community-led action for children programme. setting the study took place in western kenya, with data collected across predominantly rural sites in kisumu, homa bay and bondo districts. children and their caregivers were recruited through their attendance at early child development centres, which are typically part of government primary schools. plan has provided support for 99 early child development centres across the area, expanding learning capacity and starting parenting groups affiliated with each centre that are open to all caregivers. study population and sampling strategy plan international staff members in kenya generated a list of all 99 early child development centres included in the programme. each centre was rated as being low, average or high quality using a purpose-built rating tool. we randomly selected 20 early child development centres, equally distributed across these quality levels, as study sites. one of these centres was removed from the study after an incidence of community violence, resulting in a final sample of 19 centres. children were eligible for recruitment if they were attending one of these selected 19 early child development centres, and if they were 4 or 5 years of age at the time of baseline recruitment. all caregivers of eligible children were included in the study. the study team randomly selected and recruited an average of 30 caregivers per centre. consent was obtained for the caregiver interviews. the final sample comprised 465 caregivers at baseline. in the present article, only data from the caregiver interview are used, as direct assessment of child disability was not performed. measures caregivers were interviewed using a standardised questionnaire with two parts; one about the caregiver and household, and one about the child. demographics we asked demographic questions about the caregiver, household and child. questions about the household included household assets, electricity and water source, monthly income and number of household members. questions about the caregiver included caregiver education, marital status, income sources, age, region where they live, relation with the child they care for, human immunodeficiency virus (hiv) status, monthly income and gender. for monthly income, we asked caregivers if they made above 2000 kenyan shillings (ksh) monthly, as 2000 ksh reflected the lowest stratum of income in the target communities (communities where almost all households fall below the usd defined poverty line, and as such, a comparative income bracket structure is needed to show variation between households). questions about the child included age, hiv status, number of siblings and gender. caregiver disability washington group questions: the washington group short set of questions was used to identify disabled caregivers in the present study. the measure, which has been used in many contexts globally including kenya (altman 2016; madans & loeb 2013), was administered in survey format by trained data collectors on the project. items include questions regarding the respondent’s functioning in seeing, hearing, ambulating, cognition, self-care and communication. it includes 10 items, which include questions such as ‘do you have difficulty seeing, even if wearing glasses?’, which are answerable on a likert scale with response options ranging from 1 (no, no difficulty) to 4 (cannot do at all). the cut-off employed here, as elsewhere (loeb, eide & mont 2008), was any score of 3 or 4 on any one of the 10 items. to classify a caregiver as disabled, a binary outcome was created. a caregiver was marked as being disabled if he or she scored 3 or 4 on any of the possible disability outcomes. child disability ten questions: the ‘ten questions’ are used for the recognition of disabilities in community settings, and are a simple set of 10 items used to screen for disability in children (durkin et al. 1991; zaman et al. 1990). the caregiver report questionnaire contains 10 questions and probe questions that follow each of the questions. the questions are intended to be appropriate and useful for detecting disabilities in virtually all cultures and for all children aged 2–9 years. the checklist was translated into the local language. the questions are answerable yes/no, and include items such as ‘compared with other children, does or did (child name) have any serious delays in sitting, standing or walking’? a binary variable was created for child disability. if a child scored a ‘yes’ for any of the 10 disability-related questions asked, then that child was identified as disabled for our analysis. parenting stress parenting stress index – short form: we employed the parenting stress index – short form (psi-sf) to gauge parenting practices and responsibilities stress (abidin 1983). the 36 items include statements and prompts; the data collectors read the statement, and then prompt caregivers to respond with their level of agreement on a five-point likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). higher scores on items after coding are indicative of higher levels of stress. this scale has been used in south africa (potterton, stewart & cooper 2007) as well as in west africa (guo et al. 2014) and kenya (oburu & palmérus 2005). the outcome used is the total psi-sf score, calculated as the sum of the items. we calculated a cronbach’s alpha of 0.85. data collection all interviews and assessments were translated into luo and swahili. a trained team of experienced data collectors, who are local to the area, interviewed caregivers. the team held informational meetings at each site for caregivers and teachers ahead of data collection at each school. prior to individual interviews with caregivers, which were scheduled via cell phone ahead of time, data collectors obtained informed consent from caregivers. these forms were securely stored with the on-site supervisor (x.h. or c.l.), before being transferred to (stellenbosch university) at a later date. all data collectors were fluent in luo and swahili, and conducted interviews in the caregiver’s preferred language. all survey responses were collected by the data collectors using a tablet-based data collection application. data were stored on password-protected computers once downloaded from the application’s cloud. data analysis data analysis was structured to address our different areas of interest: firstly, caregiver disability was examined for its association with several key demographic variables, including caregiver, child and household characteristics to establish the relationship of household disability with poverty. as these relationships are using counts of caregivers in each category, we use chi-squared tests to determine any potential associations. we then ran univariate linear regressions for each predictor on parenting stress, measured by the total score of the caregiver on the psi-sf measure (psisum). we then chose a subset of the significant demographic predictors to include in a multiple linear regression based on what predictors were significant in the univariate regression. the demographics selected were chosen to best represent socio-economic status based on household item ownership and household monthly income. controlling for these demographic variables, we examined the relationship between caregiver disability and parenting stress. we then performed a similar analysis using child disability as a predictor of parenting stress (again controlling for the demographic variables). in the final multiple linear regression, we included both caregiver and child disability. for analyses that included monthly income as a predictor, we dropped observations that did not report income. all analyses were performed in r, and a 0.05 level of significance was used across analyses (r core team 2017). ethical considerations the authors assert that all procedures contributing to this work comply with the ethical standards of the south african and kenyan national and institutional committees on human experimentation and with the declaration of helsinki 1975, as revised in 2008. ethical approval for the study was obtained from the ethics boards at stellenbosch university (n15/10/099) and the ethics and scientific review committee at amref in kenya (p220/2016). results table 1 presents the demographic characteristics of caretakers, households and children. our sample included 465 caregivers who reported information about themselves and their children (n = 497 children). nearly 90% of the caregivers in the sample were women and 27% of the caregivers were disabled. table 1a: demographic information. table 1b: demographic information. table 1c: demographic information. our sample had 258 male children (52%) and 239 female children (48%). thirty-nine per cent of the children were disabled. there were about equal numbers of children who were 4 years of age, defined as being aged between 48 and 59 months (n = 268, 54%) and 5 years, defined as being aged between 60 and 72 months of age (n = 229, 46%). of all caregivers, 24% were hiv-positive and 1.6% of all children were hiv-positive, using a self-report measure of sero-status. amongst caregivers, 29% of female caregivers were disabled as compared to 13% of men (p = 0.02). there also appeared to be an association between caregiver education and disability, as disabled caregivers tended to be less educated than non-disabled caregivers (p < 0.0001). although not shown, a chi-squared test was also run to examine any association between child gender and child disability, but no relation found (χ2 = 0.00; p = 1.00). of the caregivers who reported monthly income (n = 421), 65% of caregivers made below the 2000 ksh monthly threshold. however, there existed a disparity depending on caregiver disability. of the disabled caregivers who reported income (n = 109), 72% were below the threshold, compared to 62% of non-disabled caregivers who reported income (n = 312; p = 0.05). in table 2, caregiver disability significantly predicted a higher total psi score in the univariate linear regression, indicating greater parenting stress (p < 0.001, see table 2). caregiver education, a monthly income above the 2000 ksh threshold, cell phone ownership, bicycle ownership, stove ownership and television ownership were all significantly negatively associated with parenting stress, whilst a higher number of members in the household was positively associated with parenting stress. education, household member count and monthly income were all included in the final multiple regression analysis; only cell phone ownership was included amongst the household items because it was the only asset which showed variation (with bicycle ownership and radio ownership, for instance, being equivalent between groups and very common), and was sufficient to capture the item ownership aspects of socioeconomic status (ses). after controlling for cell phone ownership, income, education and number of members in the household (ses), caregiver disability was no longer significant (p = 0.15, see table 3). table 2: demographic and caregiver disability linear regression, parenting stress index-short form measure as outcome. table 3: demographic and caregiver disability multiple linear regression, parenting stress index-short form measure as outcome. in the univariate linear regression, child disability was significantly predictive of greater parenting stress (p < 0.002, see table 2). after controlling for the same demographics used in the multiple regression model for parental disability, child disability remained a significant predictor (p < 0.0001, see table 4). caregiver disability was not significant. other covariates that remained significant were cell phone ownership, monthly income and the number of household members. having a cell phone and higher income were associated with lower parental stress, and more members in the household were associated with higher stress. table 4: demographic, caregiver and child disability multiple linear regression, parenting stress index-short form measure as outcome. discussion in this study, we found that households with a disabled member were poorer than households without a disabled member. parenting stress amongst disabled caregivers was higher than parenting stress amongst non-disabled caregivers; however, this relationship disappeared when socio-economic status was controlled for. finally, caregivers of disabled children were more stressed than caregivers of non-disabled children, and this effect was not explained by variance in socio-economic status, that is, the association between child disability and parenting stress was not attributable to the association between child disability and socio-economic status. the fact that disability was associated with poverty at the household level is to be expected, given past research (braithwaite & mont 2009; emerson 2004; lustig & strauser 2007). the finding regarding caregiver disability and parenting stress is interesting, however. the impact of caregiver disability on parenting stress appears to be largely because of the association between disability and income, suggesting that disabled caregivers are experiencing greater parenting stress because of their relative poverty, rather than the impact of their impairment on their capacity to take care of children. on the other hand, the fact that the association between child disability and parenting stress was not explained entirely by the association between disability and income suggests that the stressors faced by caregivers of children with disabilities go beyond the impact of disability on household socio-economic status. factors such as inaccessible schooling, inaccessible healthcare services and a dearth of other resources with which to attend to the child’s needs – needs that are not unrealistic, but simply at odds with that which the environment in rural kenya can provide for – place a burden of stress on these caregivers, which exceeds financial strain. a recent study from uganda found that caregivers of children with disabilities experienced extremely high levels of parenting stress, which, the authors suggested, was because of the functional limitations of the child (and thus burden of care), as well as stigma (bannink et al. 2016). in this study, we did not ask disability-specific stigma or social isolation questions, and so conclusions in this regard cannot be drawn. however, given the extra burden of work placed on caregivers of children with disabilities in contexts of low social support and little infrastructural safety net, it is possible that these caregivers are socially isolated. past studies by gupta (2007) and ones et al. (2005) have found elevated rates of social isolation amongst caregivers of children with developmental conditions. coupled with disability stigma, which has been found in past studies in kenya, these caregivers may face layers of marginalisation which compounds the negative effects of poverty (gona et al. 2011; monk & wee 2008). it is important to note that this study has several limitations engendered by the fact that this analysis was not the primary interest of the original study. firstly, the disability measures used were not optimal (observational tools would have been preferable), but the main study from which these data are drawn was not centrally concerned with disability, and so self-report tools were selected, to minimise total interview and assessment time for parent–child dyads. secondly, a potential limitation of the study is the fact that the children included in this sample were already attending an early child development (ecd) centre, which puts them at an advantage over most children with disabilities who may not be able to attend school because of various reasons including poverty. therefore, in this study, the income level of caregivers may have been slightly higher than the rest of caregivers with children with disabilities at home, and the level of disability amongst children may have been overestimated (given the estimated prevalence of 39% children with some disability) compared to the true population of children with disabilities. taken together, these findings clearly point to the need for additional support for families with a disabled member, particularly disabled children. our findings show that these households are poorer than households without a disabled member. cash transfers and social support have been implemented with much success to support families affected by disability in brazil (lindert et al. 2007; medeiros, diniz & squinca 2015) and to some extent in south africa (mitra 2010). the brazilian model, where support is provided to the whole family, may be more suitable to the kenyan context, given the present findings of family-level impact of disability on household poverty. furthermore, early child development non-governmental organisations need to have supports in place to ensure that disability-related programming, often a feature of their programming, is implemented. non-governmental organisations and community-based organisations working with children should have greater engagement with caregivers in households affected by disability, and be cognisant of parenting stress as a factor which affects families’ capacity to cope with any implications of the individual’s disability. importantly, programming should be more broadly focused on supporting caregivers to cope positively in the context of child disability (including stress management for caregivers with children with disabilities) rather than focusing on the child as the ‘cause’ of parenting stress. emerson (2004) wrote that: [i]t will be important for organisations providing services to children with intellectual disabilities and their families to: (1) explicitly recognise the importance of child poverty in defining the family resources that shape the context in which services and supports need to be delivered; (2) forge links between services for children with intellectual disabilities and their families and local initiatives aimed at either eradicating or reducing the impact of poverty. (p. 332) despite the distance in time from emerson’s (2004) observation, and expanding it to include physical and not only intellectual disability, this point still holds. our findings suggest that caregivers of children with disabilities face stressors that exceed the impacts of poverty on their functioning and well-being. this highlights the importance of comprehensive needs assessments and situational analyses being conducted by prospective programmers in these settings, as without a nuanced understanding of these stressors, supportive interventions may not adequately cater to the needs of caregivers, or their children. acknowledgements the authors would like to acknowledge the tireless work of the data collectors who worked on this project, and conducted the interviews with caregivers. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions x.h., s.s., c.l. and m.t. were involved in the research conceptualisation, research study design and project management of the study from which the data are drawn. l.s., x.h., c.l., s.s. and m.t. were involved in iterative drafting of the manuscript. r.e.w. and p.s. conducted the statistical analyses for the article, supported the interpretation of the findings and provided comments on the draft. all authors approved the final draft. funding information this study was supported by the conrad n hilton foundation. r.e.w. was supported by the ucla center for hiv identification, prevention and treatment (chipts) nimh grant p30mh058107 and the ucla center for aids research (cfar) grant 5p30ai028697, core h. data availability the data that support the findings of this study are available from the corresponding author (x.h.) upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any 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childhood experiences, poverty, and parenting stress’, canadian journal of behavioural science/revue canadienne des sciences du comportement 48(1), 32. https://doi.org/10.1037/cbs0000034 trani, j.f., bakhshi, p., myers tlapek, s., lopez, d. & gall, f., 2015, ‘disability and poverty in morocco and tunisia: a multidimensional approach’, journal of human development and capabilities 16(4), 518–548. https://doi.org/10.1080/19452829.2015.1091808 zaman, s.s., khan, n.z., islam, s., banu, s., dixit, s., shrout, p. et al., 1990, ‘validity of the ‘ten questions’ for screening serious childhood disability: results from urban bangladesh’, international journal of epidemiology 19(3), 613–620. https://doi.org/10.1093/ije/19.3.613 abstract background the implications of differential exclusion from education challenges for disability-related research in africa african renaissance as a premise for reimagining disability studies in africa conclusion acknowledgements references about the author(s) lieketseng y. ned department of global health, faculty of medicine and health sciences, centre for disability and rehabilitation sciences, stellenbosch university, cape town, south africa kudakwashe dube africa disability alliance, pretoria, south africa leslie swartz department of psychology, faculty of arts and social sciences, stellenbosch university, cape town, south africa citation ned, l.y., dube, k. & swartz, l., 2022, ‘challenges and opportunities of centring the african voice in disability research’, african journal of disability 11(0), a1089. https://doi.org/10.4102/ajod.v11i0.1089 opinion paper challenges and opportunities of centring the african voice in disability research lieketseng y. ned, kudakwashe dube, leslie swartz received: 31 may 2022; accepted: 11 aug. 2022; published: 31 oct. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract in 2020, the african network of evidence to action on disability (also known as afrinead) hosted its 10th conference in cape town. this paper synthesises inputs by the three authors as plenary addresses, particularly focusing on the challenges and opportunities of centring african voices in disability research. our concern in this article is to engage with the question of exclusion as an issue not just in the everyday lives of people with disabilities but also in the world of ideas – the ideational space. we suggest that a reimagined disability study depends on the centring of african experiences, voices and knowledges. this is especially so as there are african concepts that are not rigorously pursued in research. african renaissance thinking makes allowance not only for critically reflecting on the historical and contemporary constructs of disability but also for fashioning a higher civilisation in which people with disabilities can exist within society as worthy and valued human beings. keywords: disability; afrinead; politics of voice; ideational space; african renaissance. background in 2020, the african network of evidence to action on disability (also known as afrinead) hosted its 10th conference in cape town. because of the coronavirus disease 2019 (covid-19) pandemic restrictions, this conference took place virtually. the theme of this conference was ‘disability unplugged – what really matters to persons with disabilities in africa’. as part of the proceedings of the conference, one of the opening plenary sessions included three keynote speakers. the keynote speakers briefly talked about issues related to disability research evidence. this paper synthesises these three keynote presentations, particularly focusing on the challenges and opportunities of centring african voices in disability research. methodologically, it takes the form of a state-of-the-art type of a review, which is a generic literature review. according to grant and booth (2009), this type of review tends to report on current matters, it is typically narrative and its analysis focuses on the current state of knowledge and highlights priorities and potential opportunities for future research. the first author transcribed and synthesised all three presentations and highlighted key issues raised across the presentations. the other authors edited and cross-checked the synthesis. the following sections highlight the focus of these integrated keynote addresses, and all three authors agreed on what is to be included in this paper. the advent of the covid-19 global pandemic has thrust the often neglected and eschewed subject of disability into the spotlight. the pandemic has brought the vulnerability of all people into focus. while the pandemic has been a universal experience, however, it has led to particular difficult experiences for many people with disabilities. some of the factors that inform the specific effects of the pandemic on people with disabilities include the increased risk of poor outcomes from the disease and the adverse social impacts of efforts to mitigate the pandemic (shakespeare ndagire & seketi 2021). in addition to this, people with disabilities, who already have greater healthcare needs and are more likely to experience poor health, face significant challenges in terms of accessing healthcare (ned et al. 2020). and while the pandemic has been noted for the extent to which it decimated national economies, an equally important reflection must be made on the ways in which it crystallised ideas about which lives and bodies matter and, consequently, which ones do not. on the african continent, people with disabilities, in and out of institutional settings, were and are still being treated as an afterthought. the result of this, among other things, has been an increase in the mental health challenges faced by children and young adults with physical and intellectual disabilities (theis et al. 2021). in addition, the approach to factoring only comorbidities as the key indicator of risk for contracting covid-19 effectively ignores the interconnectedness between vulnerability to severe illness and death and the environmental and sociospatial barriers that impede on the lives of people with disabilities (ned et al. 2020). this illustrates the extent to which responses to the pandemic lacked a disability-inclusive approach and, in the process, deepened the existing alienation of people with disabilities. the pushing of people with disabilities to the margins during the pandemic is an extension of the various ways in which they are systematically omitted from everyday life on the african continent and the global south more broadly. this is an issue not just in the everyday lives of people with disabilities but also in the world of ideas – what some term the ideational space. our concern in this article is to engage with the question of this particular exclusion – to make sense not only of how and why people with disabilities’ contributions in the ideational space are largely disregarded – this is particularly so for all indigenous people with disabilities in africa (driskill 2010). we shall suggest that a reimagined disability study depends on the centring of african experiences, voices and knowledges. this is especially so as there are african concepts that are not rigorously pursued in research. research on these concepts and knowledge can produce evidence about their meaning, intent, utility and understanding of disability and humanity itself (mji et al. 2011; owusu-ansah & mji 2013). the insistence upon a reimagined disability study is thus a quest for the humanisation of people with disabilities in a world that dehumanises and decivilises them. the implications of differential exclusion from education while the right to basic education is guaranteed in the constitutions of many african countries, this right does not seem to translate adequately to people with disabilities. the world report on disability (world health organization and world bank 2010) posits that people with disabilities in africa and in the global south broadly have been differentially excluded from education when compared with others in their countries. at a global level, people with disabilities in countries of the global south are significantly more excluded from education when compared to people with disabilities in the wealthier countries of the global north. this exclusion from the acquisition of knowledge has direct implications for the opportunities for people with disabilities to participate adequately in the production and dissemination of research. people with disabilities are often positioned as the objects of research rather than equal thinkers and knowledge bearers in their own right (ned 2022). furthermore, lack of access to education limits the forms of activities that they can engage in as a means of livelihood generation. this reinforces existing prejudices about what kind of work and thinking they can do – prejudices which are persistent in africa (wolfe et al. 2013). more than this, the exclusion of people with disabilities from the ideational space could call into question the very legitimacy and validity of the knowledge that is being produced in disability studies (swartz 2018). if it is true that the insider voice and the personal are critical in the field of disability studies, as argued by garland-thomson (2005) and swartz (2018), then logic should dictate that the exclusion of these voices and persons significantly undermines the research that is being produced. while there is appreciation that insider knowledge has its limitations (swartz 2014), there is no doubt that it is crucial not only in expanding what we know about disability but also in changing the rules of how we come to know about disability. there is ample evidence in historical records that scholarship is often used to set parameters for the exclusion and even, sometimes, annihilation of groups of people who are deemed undesirable by society (ned 2022). scholarship provides an appeal to authority that may not always be. ideological and academic justifications for the abuse, dehumanisation and maltreatment of people with disabilities have played a key role in sustaining abusive practices. swartz (2018:17) emphasises goodley et al. (2017), who argued that ‘ideas about what constitutes the human and the nonhuman have bodily consequences for people whose bodies or minds do not fit the norm’. hence, swartz (2018) notes that it is evident that there are strong links between social exclusion and oppression and the dominant discursive ideas related to essential questions about disability, as well as questions of personhood. for this reason, if people with disabilities in africa and the global south at large are to define and reclaim their personhood, the starting point must be in participating in the very development of ideas that shape the spaces they occupy. challenges for disability-related research in africa it is indisputable that there is limited disability research from the frame of reference of people in these african societies and the broader global south (ned 2022). although the picture is changing (with this journal being an example), the field of disability studies is still characterised by the dominance of ideas from the global north to the exclusion of experiences and knowledges of those in the global south (ned 2022). historically, african countries have, in many ways, been portrayed as marginal and irrelevant to the dominant sites of knowledge production in the global north (comaroff & comaroff 2015; eds. grech & soldatic 2016; ned 2022; owusu-ansah & mji 2013; swartz 2018). in many of these countries, people with disabilities have been subjected to social, economic, political, cultural, epistemic and spatial exclusion. these exclusions reflect and expand exclusions based on race and class, which are embedded in their colonial histories (eds. maclachlan & swartz 2009). this is evident in countries like south africa where, as ned (2022) puts it, disability research and provision have been historically interlinked with the hierarchical racialised power which has informed issues of access and use. for this reason, attempts to redress the inequalities and inequities in disability knowledges in south africa and the african continent broadly necessitate engagement with the much broader question of power (ned 2022). the implications of the dominance of global north thinking in disability studies have far-reaching consequences. these issues are explored by connell (2000), who contends that in laying claims to universality, and thus extrapolating northern discourse to explain african realities, this global north thinking ignores the realities that people with disabilities in africa must navigate. furthermore, this domination facilitates a situation where african thinkers are all too often uncited and unacknowledged, cementing the eurocentric idea that africa is not a site with valid and scientific knowledge systems (ned 2022). how, then, should the field go forward? in the next section, we suggest one of several paths. african renaissance as a premise for reimagining disability studies in africa as we have noted, the field of disability studies is reflective of geopolitical and broader power relations, and there is limited work which centres doing disability research from the lens of african societies (ned 2022). this is to say, concepts, debates and research strategies from the global north largely frame research data from the periphery, specifically from africa. this is deeply problematic, as the majority of people with disabilities worldwide are located in the global south (greening 2015). furthermore, it has been suggested that as many as 40% of africa’s population may be living with disabilities (nyangweso 2021). this necessitates the retheorisation of disability studies through the employment of theories embedded in african renaissance – ‘a political and epistemological lens for understanding and rebelling against imperialism and neocolonial advances in formerly colonised african societies’ (sesanti 2016 cited in ned 2022:3). the concept of the african renaissance has mobilised debates in south africa, specifically since former president thabo mbeki’s time, as evidenced in the new partnership for africa’s development (nepad). however, before mbeki’s time, cheikh anta diop shaped and pioneered the concept, specifically emphasising the need for a political, economic, cultural and epistemic rebirth in the african continent (diop 1996), upon recognising the way in which africans have been dehumanised by colonisation and colonialism. mbeki (1998) later followed diop’s footsteps and reiterated the african renaissance idea in his inaugural address as a chancellor of the (then known as) university of transkei in umtata in 1995 and later in various high-level meetings such as the corporate council on africa in chantilly, virginia, united states of america, in 1997 and another which was held in september 1998 in johannesburg, south africa (cossa 2009). such a lens recognises the various ways in which development processes are a key factor to poverty and underdevelopment, which contribute significantly to both the creation and the reproduction of disability (chouinard 2014). disability is not only about physical impairment but also about the sociospatial, environmental, cultural and economic constructs that produce and reproduce it. this understanding grounds the work of critical disability and decoloniality scholars who are posing salient questions around whether and how coloniality and the colonial and neocolonial system not only reinforce ableism but also create disability and disabled bodies (meekosha 2011). this work builds on the contributions of scholars such as fanon, who, in the wretched of the earth (fanon 2005), draws the link between colonialism and mental pathologies in colonised subjects. for example, fanon notes how treatments of inferiority emanating from both the ableist ideologies and colonial oppression and exclusion play are key factors in the creation of mental illness and a poison towards one’s sense of self (ned, kpobi & ohajunwa 2021). the legacies of colonialism can be observed not only in apparently high rates of impairment but also in the ways that people with disabilities are treated in contemporary africa – from being hunted for magic potions and denied access (tanner 2010) to people with albinism being particularly killed for false beliefs related to get-rich-quick schemes (ojok & musenze 2019). the treatment of people with disabilities mimics extractive and demeaning practices which were central to the colonial project. african renaissance calls for an insistence on a view of africa and africanness in which beliefs about disability are integrative and where people with disabilities are given visible roles in society and part of common activities of daily living (ned 2022). this reflects the african philosophy of ubuntu, which locates disability politically within the wider environment and sustainability practices which are integral to participation and inclusion of people with disabilities (berghs 2017). this is reflected in african proverbs and idioms such as ‘it takes a village to raise a child’. applied to childhood disability, a sense of belonging may provide a key guard rail against the alienation and victimisation of children with disabilities. isolation, exclusion and hence maltreatment may be seen to be linked to a western philosophy of individualism and extractive labour practices, whereby people are measured individually in terms of how they produce for the dominant economy (ngoetjana 2007). african renaissance thinking therefore makes allowance not only for critically reflecting on the historical and contemporary constructs of disability but also for fashioning a higher civilisation in which people with disabilities can exist within society as worthy and valued human beings. conclusion the covid-19 pandemic has highlighted the necessity of a disability-inclusive approach in responding to structural challenges in africa. it has demonstrated the ways in which a disabling society reproduces conditions that give rise to disability. this approach must be evidence-based and have at its centre the intellectual labour of those with disabilities. the challenges in disability research demand dedicated critical scholarship and dedicated activism on the part of disability scholars and activists. they also demand great reflection and interrogation. it is important as we move forward to reflect on how, unwittingly, even progressive initiatives like capacity-building may reinforce dominant power relationships and the enforcement of normalcy (swartz 2018). sustained reflection is necessary to help us avoid the reproduction and reinforcement of exclusionary practices that confront people with disabilities in africa. we suggest that african renaissance ideas may be a more humanising approach; core to this approach, though, is not just an appeal to africanness but also a commitment to self-reflection and to taking responsibility for our own power and its possible disabling consequences for other africans. acknowledgements the article is based on the presentation made by authors at the afrinead conference. we are grateful to the anonymous reviewers for helping in refining and clarifying our thoughts. competing interests the authors declare that they have no financial or personal conflict of interest that may have inappropriately influenced them in writing this article. authors’ contributions l.y.n. drafted the first draft of the article. both k.d. and l.s. provided feedback, guidance and editing. l.y.n. finalised the paper. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this paper received no funding. data availability data sharing does not apply to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors. references berghs, m., 2017, ‘practices and discourses of ubuntu: implications for 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young adults with physical and/or intellectual disabilities’, disability health journal 14(3), 101064. https://doi.org/10.1016/j.dhjo.2021.101064 wolfe, k.e., ajuwon, p.m. & kelly, s.m., 2013, ‘working with visual impairment in nigeria: a qualitative look at employment status’, journal of visual impairment and blindness 107(6), 425–436. https://doi.org/10.1177/0145482x1310700605 world health organization and world bank, 2010, world report on disability, world health organization, geneva. introduction conclusion acknowledgements references about the author(s) brian watermeyer department of global health, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation watermeyer, b., 2025, ‘engaged scholarship, disability and the politics of the personal: mentorship by leslie swartz’, african journal of disability 14(0), a1820. https://doi.org/10.4102/ajod.v14i0.1820 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. opinion paper engaged scholarship, disability and the politics of the personal: mentorship by leslie swartz brian watermeyer received: 31 july 2025; accepted: 30 aug. 2025; published: 30 nov. 2025 copyright: © 2025. the author. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). introduction now a disability studies academic in my mid-fifties, my relationship with leslie swartz as supervisor, mentor and friend spans well over 30 years. this special issue celebrates leslie’s extraordinary contribution to disability studies as a discipline, as well as to awareness of disability as an issue of social justice in south africa and across the continent. in the story of my mentorship by leslie, this growth of intellectual discourse on disability takes place parallel to my own life as a university student with disability and later as activist, clinician and academic. it is a demonstration of how, for leslie, the work of intellectual inquiry is embedded in an ethics of real life, which is curious about the human world in ways which transcend divides between personal, professional, scholarly and political realms. observing leslie’s career is a study in the compassionate ethics of engaged scholarship which, as i shall explain, has empowered the breaking of oppressive silences in many lives, including my own. starting out as a young person living with severe visual impairment, my future was very uncertain. born into the privilege of white suburban south africa of the 1970s and 1980s, i battled through school in a mainstream setting, before being exceptionally fortunate to be admitted to university. although the path was hard for me in many ways, because of apartheid’s racist and ableist policies the vast majority of young south africans with visual impairment had at that time not experienced the inside of a classroom, underscoring the inequalities that i benefitted from as a white, male and heterosexual south african. undoing the silencing of the lives of those left out, and foregrounding how this mass exclusion continues to stain our democracy, is an ongoing motivation for my own research work (watermeyer, mckenzie & kelly 2024). disability intersections with higher education as an undergraduate i aspired to train as a clinical psychologist, but feared that this career path, like so many others, would be prohibited by my disability. it was a time when visually impaired persons in our country, if employed at all, were limited to an exceptionally narrow repertoire of occupations, headlined by switchboard operating and piano tuning. growing up with the invisible, insidious reality of progressive vision loss, my well-meaning but illequipped family showed me that if i was to be accepted in the world, the only option was to appear as non-disabled as possible and certainly make no demands (omansky 2011). as i was unable to access print in the usual way, my ageing but dedicated mother read an entire bachelor’s curriculum to me, at a time when access support at south african universities for students with disabilities was in its stuttering infancy (howell 2006). my university experience was coloured with insecurity and loneliness, as it seemed clear to me that, were i to disclose my disability to lecturers or administrative staff, the response would be to tell me that i had no place being there. and if that was true, then there appeared to be little possibility that i would be acceptable to a professional community in clinical psychology. nevertheless, i completed my undergraduate programme with a distinction and went on to my honours year in psychology, where my research project was supervised by prof leslie swartz. still with no reliable access support, i endured periods of indescribable stress, as i scrambled to gather the means to perform my studies. i quickly became aware of leslie’s interest and concern for my situation, which was an unusual one, because students with visual impairment were, at that time and institution, rare. during this period, i held a bursary for students with disability from a philanthropic organisation. to confirm that their money was well spent, the organisation required that an academic staff member from the university sign a document declaring that the profession to which i aspired would not be made unfeasible by my particular disability. imagining this to be a routine procedure, i took the form to the professor in charge of the masters level professional training in clinical psychology, to ask for her signature. she abruptly refused the request, opining that it was impossible for someone living with visual impairment to train or work as a clinical psychologist and advising me to seek an alternative profession. reflected here was the way in which ableism remains built into the foundations of the university as we know it, with narrow conceptions of achievement at its core (dolmage 2017). i was shocked but also unsurprised by the professor’s response, leaving me in a familiar place of insecurity, alienation and fear for the future. i had no grounds on which to argue and felt, familiarly, that there would probably be no place for me in the world of work, and that i was too damaged to be of any real use to society. with no other choices, i nevertheless put in my application for the masters level clinical psychology training and was invited to a selection week of intense interviews and role-plays. this procedure was very anxiety provoking indeed for all applicants, but the apprehension was compounded for me by the resurgence of an archaic, deeply embedded feeling that i did not, could not, belong. my memories from those first interviews remain vivid, more than 30 years hence. at one point a professor on the panel, who was in charge of the internship placement in neuropsychology, confronted me brusquely with the following ‘problem’: ‘how’, she asked, ‘am i supposed to deal with you? we run a very busy unit; i don’t have time for problems’. i had no answer. other questions reflected similar demands from the selection committee, that i offer some sort of a plan to deal with whatever access difficulties arose during the training. of course, like any applicant, i had virtually no understanding of the day-to-day reality of a trainee or practitioner and so had barely any idea of the possible problems that may arise, let alone solutions. looking back, what was in fact anxiety felt by trainers through being confronted with the awkward anomaly that was me, showed itself in simmering exasperation and resentment. this anxiety was evident just behind their congeniality. my application was turned down, with the feedback that i required more self-insight and life experience. this assessment was, in fact, accurate – a fact that is clear to me now after having selected and trained a large number of clinicians myself. yet it was impossible for me to know how my disability had featured in the discussion. my hunch was that the door was very firmly and probably permanently closed to me, as a ‘misfit’ (garland-thomson 2011) to the profession and its gatekeepers. but while my reality was as new to him as anyone else, i sensed in leslie a generous interest in me and the dilemmas which my presence raised for broader questions of inclusion and equity. disability, ideology and the university it is difficult to overstate the silence and invisibility of disability in higher education (and elsewhere) in south africa in the mid-1990s – it was not part of the diversity agenda, instead occupying an awkward, marginal position shrouded in medicalisation and exclusion, which was seldom questioned (watermeyer et al. 2006). it is in countless challenging circumstances such as this that i have, over decades, learned from leslie’s exceptional ability and courage to look beyond what is comfortable, to questions that seem obscure and overwhelming in the present, yet will all but define the future. only very recently has debate in health sciences education literature begun to clearly voice the reality that, if we are to create services attuned to the life worlds of people with disability, it is essential that the disability community be well represented in the ranks of every health profession (edelist et al. 2024; iezzoni 2016). thirty years ago, such an idea was barely thinkable. still with no reliable present or future, leslie’s thoughtfulness began to provide me with a place to begin making sense of the bewildering world i had inhabited since early childhood. over the following 4 years i underwent 8 masters’ selection processes across 5 south african universities, with the issue of my disability surfacing again and again, in varying ways. some responses were, in today’s terms at least, unashamedly discriminatory, amounting to an unspoken question, as in my first experience described above, of ‘why are you wasting our time?’ on other occasions, i was required to answer intrusive, sometimes mystifying questions about my disability, reflecting jarring ignorance regarding issues of identity and difference in general. if i chose to speak at length about my disability it was read as my having not yet ‘come to terms’ with it, and being stuck in some form of self-absorption. if i, in response to this view, chose to de-emphasise my disability, this was read as denial. but what was occurring over this period, with leslie’s ongoing support, advocacy and facilitation, was the development of a national debate in higher education over the question of training visually impaired psychologists in particular, and professionals with disability in health sciences and other fields in general. undergoing selection interviews at our university three times over a 4-year period, i sensed a change in the engagement with me, perhaps as anxieties about the unknown were slowly replaced with the beginnings of critical thought on disability and diversity. four years after my initial application i was accepted onto the programme. notwithstanding what i have already said, i want to point out that the decision to accept me into training was an act of courage and faith on the part of my lecturers and supervisors – i certainly did not have all of the answers, but nor did they; we were all venturing into uncertain territory. clinical work comprises a host of different skills, many of which rely heavily, in traditional ways of working, on vision. leslie’s ever-curious and intellectually bold example was a foundation for all of us during this time, with his tireless position of not asking whether we can do what is right, but rather how we will achieve it. while the path was difficult for me, i also cannot emphasise enough that without my white, middle-class privilege and the social capital it afforded i would not have been able to begin this battle, let alone sustain and finally overcome it. adjectives fail me as i try to describe the depth of silencing, the slammed door of exclusion, which confronts most south africans living with severe forms of impairment. listening to oneself and one another through the course of this period, and into my training years and beyond, my relationship with my disability, as well as with myself and the world, was undergoing seismic changes. if one begins with a deeply held assumption, as so many people with disability do, that it is entirely up to you to find a way to fit into a barrier-ridden and largely indifferent world, then the journey to some degree of solid, appropriately entitled ground is a long and non-linear one (watermeyer & swartz 2008). simplistic social model thinking would have us believe that the answer to every disjuncture between the impaired body and the social world is a one-dimensional demand for material accommodations, flanked by the fantasy that such changes can solve any and all problems of access and participation (thomas 2007). of course, all identifiable and avoidable material barriers must be dealt with, but what emerges through this process is the social model’s denial of relationship, complexity and the pivotal role of affect (watermeyer 2013). disability begins with human difference, which is hard enough for any of us, but then adds the reality of how diverse bodies intersect with material and cultural environments in a myriad ways. without deliberately centralising relationship in the work of inclusion, the project has no hope (kittay 2011). for me, and with leslie’s support and example, inclusion requires constant re-negotiation in the context of compassionate listening on all sides – what i have elsewhere referred to as a ‘generosity of engagement’ (watermeyer 2013). this is not to suggest that people with disability should approach the world apologetically, not at all. but it does point to the reality that we are all products of segregation, and that disability difference is for most people both new and unsettling; it is possible to firmly advocate for inclusion while holding empathy for those grappling with change. it is likewise possible to protest vociferously without othering or dehumanising those we see as obstacles to transformation. later, supervising my master’s research project, leslie’s incisive but always empathic thinking began to convince me that i might have something useful to say about disability in an unequal, excluding world. this is no small thing, as the invisibilisation of experience and the prohibition of expressions of emotion are centrepieces of the ableist world’s response to the impaired body-mind (ahmed 2010). put simply, the social world endlessly reiterates, both discursively and in its material nature, that disability-related struggle is a shameful taboo and is not only unacceptable in social exchange, but even internally is best banished to the furthest reaches of one’s awareness. this is true for both socially engendered adversity and difficulties relating to embodiment. establishing a clear dialogue with what one’s experience as a person with disability is, as well as how one feels about it, is the first step towards disentangling the layers of othering, blame and shame which permeate the air around impairment. but the unrelenting invalidation experienced by so many people with disability can make this an insurmountable challenge. successful social movements are those that care for the hearts and minds of their constituency, rather than only operating mechanistically at the level of the tangible. it is for this reason that i continue to be an ardent advocate of empowering, subversive mental health services, such as psychodynamic psychotherapy and group-based psychopolitical conscientisation for disabled people. after fanon (1963), it is to me beyond doubt that the ways in which ableist ideology settles into the inner worlds of people with disability as internalised oppression must be recognised as a lynchpin which cements exclusion and inequality. overcoming this is the ever-unfinished work of a lifetime. thanks to leslie and the extraordinary privilege of my education and career path, i have on my own journey been gifted with an artillery of intellectual tools, opportunities for growth, the supportive relationships of co-travelers and insights and knowledge from the research record in disability studies – in short, a world of ways to make sense of my own life. yet, even with these resources, aspects of disability and ableism remain mysterious and obscure, gesturing towards human dilemmas which transcend time and circumstance. inequality in access to knowledge on disability as an issue of social justice, as well as the humane, relational support needed to cultivate self-compassion in the face of a bewildering, obliterating world, is an absolutely central challenge to the cause of disability liberation. mentorship and being believed through the course of my master’s and later doctoral research, leslie became not only an intellectual guiding light and mentor but also an academic colleague and dear friend. going out on a limb, he was instrumental in my first appointment to an academic post, thereafter engaging with typical enthusiasm in dilemmas and struggles associated with securing reasonable accommodation. i cannot say for certain, but perhaps our work together in those early years was part of what sparked his growing interest in disability studies, leading to his prodigious later work in the field, as well as our many collaborations. like so many people with disability, i had previously had little experience of that layer of my subjective life which pertains to disability being welcomed or believed, which is an essential precursor to internalising another’s faith in oneself. of course, one has to say something before one can be believed, and as i have said, so many lives with disability are shrouded in silence (murphy 1987). yet a relationship that allows the beginning of trust that one will be believed, showing itself in the growing internal sense that one’s experiences are worthy of contemplation, is a rare gift. as reflected in the testimonies of many others in this collection, leslie’s ability to, first and foremost, clearly affirm that one’s understanding of and response to the world is legitimate and meaningful, no matter how strange or awkward it may be, is a precious gift. it reflects the heart of an intellectual driven not only by curiosity but also by a humble and honest compassion. the invitation posed to myself, as well as so many others privileged to have been mentored by leslie is something like ‘tell me who you are, what things are like for you. we have time, it’s important, and i’m curious’. there could be no better example to young academics in the social sciences concerned with undoing injustice. after that comes the gift of faith that one might contribute something of value to the world, which, in my case as well as many others, i began to believe. i understand relationships with mentors and role models – in our work, often positioned as research supervisors – as operating at a number of levels. of course, there is the obvious and essential issue of intellectual guidance and the fostering of critical thought. more rarely discussed, though, is what occurs at the level of affect, at which – to put it simplistically – a relationship can release self-assurance and creativity or reaffirm conflicts with the self over adequacy, which can halt growth. i have alluded above to our human need to be listened to and understood by a kind and accepting other, who may also express some faith in our ability to accomplish things we aspire to. without someone credible telling us that we can cope with what vygotsky (1978) called the ‘zone of proximal development’, located just beyond the limits of our confidence and abilities, we literally have nothing to go on, no reason to believe that we can grow and develop. to be impactful, however, this message must come wrapped in an accurate, empathic understanding of who we are and what things are like for us. at play here is what the psychoanalyst wilfred bion (1962) called ‘containment’ – an experience of someone else welcoming and being able to hold our reality, in all of its complexity and messiness, while still having faith that we will, after all, be ok. the experience of being thought about by someone else in this steady, compassionate way builds inner security, allaying self-doubt and anxiety in a manner which opens the way to expressiveness and creativity, so important in our work as explorers of new knowledge. i have argued elsewhere that, because of the silencing and concealment so prevalent around disability, people with disability may to some extent be systemically deprived of this most important resource (watermeyer 2013). as has been described in a range of identity markers, broader society generally does not want to know how members of oppressed groups feel, and exercises a range of prohibitions accordingly (cheng 2000). in the lives of people with disability, often surrounded by human networks which encourage avoidance of the awkward topics of exclusion, discrimination and embodiment, this means a lack of experiences of feeling truly known, and hence having one’s experience – not least of ableist oppression – validated. the purpose of this discussion is to describe the gravity of my experience of being met, in an existential sense, by leslie as a supervisor with a deep understanding of these dynamics, as well as the moral insight to act upon them. over decades i have also had the privilege of observing leslie’s capacity to engage with the same gentle curiosity, as a white heterosexual, jewish and middle-class professor, across other intersecting forms of difference, from race and gender identity to language, sexuality, socio-economic status and religion. oppressive histories are disrupted and confounded along the way, but never denied. a host of testimonies demonstrating this are to be found in the pages of this publication, often showing how this action, at once personal and political, resonates with the liberating subversions of decoloniality, as epistemic hierarchies are disrupted to reveal new knowledges. in my own work, i have been shown time and again how significant it is for students with visual impairment, or any form of disability, to be supervised by someone who shares the same identity. as a student, it would literally have meant the world to me to have access to a role model who was ‘like me’ who had managed to succeed in my chosen profession, as well as in the professional world in general. in my conversations with students with disability i have supervised, i see how my own life-world benefits greatly in my attempts to provide experiences of understanding and validation, which are typically a stark contrast to the signals from society received previously. but this cycle of mentorship had to begin somewhere, and without extensive personal experience of life with impairment to draw on, it was leslie’s exceptional foresight, empathy and courage which excavated a hidden but essential conversation. in my own role as mentor it is leslie’s example of compassionate curiosity which, even after many years, i continue to draw on. being there in any struggle to do with identity and exclusion, the first and most basic priority is presence – in other words, making the marginalised visible in domains which have excluded them, such as institutions. it is only through engaging daily across our differences that we can begin to confront all that divides us, from prejudice and paranoia to questions of access, equity and the cultivation of mutual understanding. in the disability arena universities have a pivotal role to play as environments that carry formative influence on the culture of our social institutions, as professionals reproduce what they have learned in both manifest and hidden curricula (dolmage 2017). universities that fail to include persons with a range of impairments as students and staff at all levels perpetuate societies built on an artificial and fallacious understanding of our shared humanity, reflecting a hierarchy of belonging in the human family. this is a harm not only to the disability community, but to all of us, as it upends the work of creating societies that welcome the vulnerability which we all ultimately share, despite our frantic appeals to the contrary. the history of structural segregation and cultural concealment means that disability is, in its many forms, a new and strange reality for most people to experience at close quarters – step one is to ensure that disability is in the room. we then have a place to begin. conclusion as the movement for social justice surrounding disability continues, an essential element is the nurturing of self-awareness and self-compassion among the disability community, to overcome the annihilating silence which ableism creates. carefully listening to the voices of people with disability, not simply with a sense of solving problems of access – important though this is – but with consciousness of our shared vulnerability as part of the human family, moves us closer to this ideal. across society, so many remain hoodwinked by the myth of some fundamental difference in the humanity of those designated as with disability and those not, supporting division, inequality and an alienation from self in all. leslie’s insight remains that disability struggle is not only continuous with human struggle, it is foundational to it. consequently, an open-hearted engagement with our fears and assumptions about disability has much to teach us about overcoming human divides of all kinds, lighting the way to a more caring society. these learnings have powerful consequences on both the societal and internal plains; i thank leslie for guiding us towards a more inclusive and humane future. acknowledgements competing interests the author declares that no financial or personal relationships inappropriately influenced the writing of this article. author’s contributions b.w. declares that they are the sole author of this research article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the author is responsible for this article’s results, findings and 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(eds.), 2006, disability and social change: a south african agenda, hsrc press, cape town. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) esther m.a. gimono department of philosophy, school of liberal and performing arts, makerere university, kampala, uganda citation gimono, e.m.a., 2025, ‘experiences of deaf women and girls in accessing maternal health rights and services in uganda’, african journal of disability 14(0), a1627. https://doi.org/10.4102/ajod.v14i0.1627 original research experiences of deaf women and girls in accessing maternal health rights and services in uganda esther m.a. gimono received: 30 nov. 2024; accepted: 03 apr. 2025; published: 16 july 2025 copyright: © 2025. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: women with disabilities are at disproportionate risk for adverse pregnancy outcomes partly because of the limited information on their pregnancy histories. however, deaf women are faced with communication challenges, sexuality, menstrual health as well as pregnancy and its care, which remain a contemporary phenomenon. still, little is known about the lived experiences of deaf women and girls. objectives: the aim of this study was to examine the maternal health experiences of deaf women and girls, identify the challenges that influence their antenatal, childbirth and postnatal outcomes and improve access. method: the study used qualitative research of an intrinsic case study design utilising semi-structured interviews and focus group discussions with 50 deaf women and girls who are deaf or hard of hearing in mbale district and 13 key informants from state and non-state entities. documentary analysis was also utilised to examine government documents on this topic. results: findings revealed that 100% of deaf women and girls lack antenatal services tailored to their linguistic needs and communication barriers, which provide no opportunities for better medical provider–patient communication. conclusion: despite uganda’s legal frameworks on maternal health rights (mhrs), deaf women and girls’ linguistic needs are yet to be incorporated into the ugandan health sector. current healthcare provisions do not always meet their needs during maternal services. therefore, visible and constructive policies are necessary to steer deaf mhrs and services. contribution: deaf epistemology should be integrated into policy, research spaces and practice for effective and evidence-based policies needed to guide sexual and reproductive health services among deaf women and girls. keywords: maternal health rights and services; deaf women; deaf girls; sign language; ugandan sign language; uganda, mbale district. introduction women with disabilities are at disproportionate risk for adverse pregnancy outcomes partly because of the limited information on their pregnancy histories (gichane et al. 2017). they face particular barriers to their rights, as gender and disability intersect (al-nashif 2020). there are widely held beliefs that the bodies of persons with disabilities (pwds) in general and women with disabilities in particular are ugly, shameful and unattractive (twinomugisha 2018). studies that have explored the maternal healthcare experiences of women with disabilities have found that they face a myriad of challenges in accessing and receiving care (redshaw et al. 2013; twinomugisha 2018). although different empirical studies have been done on maternal healthcare of women with disabilities (ganle et al. 2016; gichane et al. 2017; twinomugisha 2018), including deaf women, little is known about the lived experiences of maternal health rights (mhr) and services in uganda. deaf women are members of a minority group faced with communication challenges, especially where verbal communication is needed (adigun, akinrinoye & obilor 2021). thus, the inability to actively communicate and interact adequately in situations where oral communication is required has put the deaf at a disadvantage (adigun et al. 2021; mitra et al. 2020). among the challenging issues related to deaf women’s health are sexual and menstrual health, as well as pregnancy and its care, which remain a contemporary phenomenon (adigun & mngomezulu 2020). in particular, pregnancy care for deaf pregnant women vis-à-vis antenatal registration, visits and associated care is still unclear (adigun & mngomezulu 2020). scholars like mitra et al. (2020) revealed that deaf and hard-of-hearing women are more likely to have chronic diseases, pregnancy complications and poor birth outcomes than hearing women. available data suggest that when it comes to the experience of maternity services, deaf women report lower satisfaction with the overall quality of antenatal care, fewer antenatal appointments and poor communication with physicians, but when provided with access to the interpretation services they need, they report higher satisfaction (adigun et al. 2021; gichane et al. 2017; o’hearn 2006). additionally, evidence further suggests that communication barriers contribute to lower utilisation of health services by deaf women (gichane et al. 2017). and they are more likely to have fewer prenatal visits and are frequently less satisfied with the prenatal care they receive than their hearing counterparts (o’hearn 2006). the rights of pwds are provided in the convention on the rights of persons with disabilities, 2008 crpd (2008). uganda is a state party to this convention, which obliges the government to respect, fulfil and protect the rights of pwds based on the human rights principles of equality, non-discrimination, effective participation and inclusion in communities; respect for inherent dignity and autonomy; equality between women and men and respect for the evolving rights of children with disabilities (nudpu 2011). the crpd provides for the rights of women with disabilities, including maternal health rights under article 6(1), which provides that state parties recognise that women and girls with disabilities are subject to multiple discrimination and, in this regard, shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms (crpd 2008). article 6(2) further shows that state parties shall take all appropriate measures to ensure the full development, advancement and empowerment of women for the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the convention (crpd 2008). the maputo protocol, 2003, under article 23, focuses on the special protection of women with disabilities, emphasising their rights to freedom from violence and discrimination and the right to be treated with dignity (maputo protocol 2003). at the national level, the ugandan constitution, 1995 as amended provides article 35, which guarantees the rights of pwds, stating they have a right to respect and human dignity, and the state and society must ensure they realise their full potential (constitution of the republic of uganda 1995). this constitution under article 33(1) guarantees that ‘women shall be accorded full and equal dignity as men’. moreover, article 33(3) further recognises the ‘unique status and natural maternal functions of women in society’ (constitution of the republic of uganda 1995). despite all these legal frameworks, deaf women and girls’ maternal healthcare services are ignored and left out. according to who, maternal health refers to the health of women during pregnancy, childbirth and the postpartum period (twinomugisha 2017; who 2012). theoretical framework this study used the social model of disability and human rights-based approach (hrba), which shaped and provided a lens through which the research was analysed. the social model of disability explains disability as a social construct through discrimination and oppression (degner 2014). through the social model, disability is considered secondary to the individual (shakespeare 2010). instead, the individual’s strengths, aspirations and needs are primary to disability (shakespeare 2010). this model focuses on barriers and structures that affect the individuals because of their disability (shakespeare 2010). while the social model merely explains disability, the hrba encompasses the values for disability policy that acknowledges the human dignity of disabled persons (degner 2014). a hrba aims to increase the capacity of both the duty-bearers and the rights-holders (undp 2006; unfpa 2014). this approach applies the aaaq framework (availability, accessibility, acceptability and quality), which depends on the conditions prevailing in a particular state party (rukooko 2012). this study was to examine mhrs and services among deaf women and girls in the mbale district. the aim was to gain insights into maternal health awareness and practices to illuminate and redirect future action policies and programmes. as such, this study responded to the following questions: (1) what are the maternal health rights and services awareness and practices that exist among deaf women and girls? (2) what are your sources of information about maternal health rights and services? (3) what contributions has the government as a duty bearer made towards implementing maternal health rights and services for deaf women and girls? research methods and design this study used an intrinsic case study that focused on deep understanding of deaf women and girls’ unique linguistic needs on access to mhrs and services, which was described and detailed (creswell 2013). using qualitative methods, the lived experiences of mhrs and services were examined by means of semi-structured interviews, focus group discussions (fgds) and documentary analysis, which entailed reviewing or evaluating government documents, both printed and electronic material, on this topic (bowen 2009). this study used deaf epistemology that relied heavily on personal testimonies, experiences and personal accounts to document knowledge (holcomb 2010). as ladd (2003:19) suggests, deaf epistemology is an opportunity for people to understand clearly ‘deaf ways of being in the world, of conceiving that world and their place within it, both in actuality and in potentiality’. deaf epistemology provides first-hand accounts on which knowledge is based (holcomb 2010). this paradigm allowed the participants to freely describe their own experiences and testimonies on mhrs and services and understand their world and develop their particular meanings that correspond to their experience. as a researcher, my role was to listen carefully to their views and interpret the findings based on their background and experiences (creswell 2013). the interpretation of their experiences revealed a significant amount of information regarding the challenges and new insight into the overall study. in a nutshell, epistemology addresses the question, how do we know what we know? in the case of the deaf world and the field of deaf education, what constitutes true beliefs or justified beliefs? one goal of epistemology is to determine the criteria for knowledge so that we can know what can or cannot be known (holcomb 2010). this study was carried out in mbale district in eastern uganda because mbale suffered teenage pregnancies, which were shockingly high in 2018, 2019 and 2020 (cedaw 2022; fawe 2020; mukaaya & chemitai 2021; new vision 2019; ubos & icf 2018; uganda bureau of statistics 2017). additionally, it is where the largest mixed government-owned secondary school for the deaf is found (mbale school for the deaf). moreover, the study also purposely selected kampala, where the offices of the key informants are located. research settings population and sampling techniques a total of 63 study participants were recruited in this study. the study purposively used 50 deaf women and girls who were focus group participants, and, among these participants, some of them requested for follow-up in-depth interviews. the 13 key informants included three executives from government departments, for instance, ministry of health; ministry of gender, labour and social development; and ministry of education and sports; 1 executive from the uganda national association for the deaf (unad); 2 village health teams (vhts); 1 school administrator; 2 health workers; 1 community development officer (cdo); 2 sign language interpreters and 1 deaf husband. the research team contacted the deaf school about the population size of the female deaf students between 15 and 17 years. however, the school declined because of the ongoing court investigation of corruption charges. moreover, the research team also approached mbale district headquarters to access the documents of the population size of deaf women in this area. unfortunately, data were unavailable. therefore, the research team had to change the recommendations and principles to select the sample size. sample size in qualitative research has been the subject of enduring discussions (morse 1995, 2000; sandelowski 1995). despite these discussions, various conceptual developments have sought to address this issue, with guidance and principles and, more recently, an evidence-based approach to sample size determination seeking to ground the discussion empirically and recommend different sample sizes in the process of obtaining data saturation (lincoln & guba 1985; morse 1995, 2000; sandelowski 1995). for instance, morse (1995) recommends that phenomenologies and case studies directed towards the essence of experiences include 30–50 participants to obtain saturation in qualitative studies. sandelowski (1995) reveals that qualitative studies may involve over 50 sample sizes. moreover, one of the most acceptable standards in qualitative research is to allow the data to reach data saturation (creswell 2013; creswell & creswell 2018). in terms of principles, lincoln and guba (1985) proposed that sample size determination be guided by the criterion of informational redundancy; that is, sampling can be terminated when no new information is elicited by sampling more units (lincoln & guba 1985). it is upon the above recommendations and principles that this study selected a sample size of 50 participants. prior to data collection, team and i selected 30 women from busamaga, then 6 fgds were formed consisting of 5 participants in each group, but the study applied the principles of informational redundancy as cited in lincoln and guba (1985). then, after a discussion with the 5th fgd, enough data were collected from the participants, and they fully responded to all relevant themes and perspectives, which led to the termination of the process. this means that one group was dropped because it was unlikely to provide significant new information. this led to 25 participants who were utilised. recruitment was done at the church and busamaga health centre during weekends. similarly, in busoba village, prior to data collection, the team and i selected 40 girls, and then 8 fgds were formed, consisting of 5 participants in each group, because of the principles of informational redundancy, as cited in lincoln and guba (1985). after a discussion with the 5th fgd, we reached data saturation, and the rest of the 3 groups were dropped because they were unlikely to provide significant new information, which led to 25 participants who were utilised. therefore, the overall sample size selection was 50 participants. the intent in selecting these villages was to sample participants with diverse characteristics so that views from deaf women and girls with different perspectives on the topic can be reflected. firstly, these villages were selected because busamaga village has the largest referral health centre that offers medical services to more than 24 villages and a community deaf church. secondly, busoba village is where the deaf school is located. inclusion criterion the criterion for inclusion was based on profound deaf or hard of hearing who only use sign language and had knowledge of mhrs and services and an age range between 15 and 49 years. therefore, any participant who was not in that age range and the above criterion was excluded. during the selection of participants, the research team met with the local council members of these areas, church leaders, school administrators, health workers, including vht, and the cdo for the introduction to a phd study. then, we were allowed to access all the sites and participants in these areas. permission was both written and verbal. deaf women were mobilised through community engagements with vht, church leaders and the local leaders. the vht and church leaders were key in identifying the deaf women because they interact with them in health-integrated programmes and church services. in busamaga village, the team of some local leaders, together with the research team, moved door to door and attended church services to inform the participants about the study. interestingly, most of the deaf women were delightful for recruitment. they were informed of their ethical rights by disclosing details about the purpose of the study, procedures, potential risks and benefits, allowing them to freely choose to participate without coercion or misunderstanding the details of the study. later on, they consented to and assented to the interviews and fgds. meanwhile, deaf girls were recruited from busoba village in mbale school for the deaf; permission to carry out interviews and fgds was sought from the school administration and parents. consent and assent permission were sought from the girls, parents and the administration of the school because, according to the uganda national council for science and technology (uncst) act of 2000, cap 209, a 17-year-old is considered a minor and would typically need both their own consent and parental consent to participate in any research study (uncst 2000). students who participated in the study were met on weekends, and only those who passed the inclusion criterion attended the screening, recruitment, interviews and fgd selection and were considered. while at school, the administrator gave us privacy and we promised the student and staff confidentiality in all discussions. the study purposively selected three government ministries because during the second global disability summit (2022) held on 16 – 17 february, the disability summit commitments for the republic of uganda were based on the five core themes placed under these three ministries as follows: under theme 1 and theme 4: capacity enhancement of pwds and their organisations. the government of uganda, through the three ministries, will facilitate capacity building for pwds through the organisations and mobilise partnerships for research to inform evidence-based investments in pwds. further, selection of key informants was done by presenting my introduction letter and research ethics committee documents to the offices of permanent secretaries of the targeted government institutions and other stakeholders who are working under disability to inform the study objectives. then the study was approved and provided with administrative clearance to access these departments. the clearance letter indicated the office and each key informant for the interview. the interviews focused on the contributions of the government as a duty-bearer in promoting mhrs and services among deaf women and girls, as well as how these programmes are implemented in the deaf community. the study also applied snowball sampling because after interviewing the first key informant, they led the study to another key informant, who dodged the appointment, but referred to another key informant, whom i interviewed. these informants then acted as ‘seeds’ that led the study to their counterparts in a process of snowball sampling. i later discovered that most of the key informants did not have any information on deaf people, and that is why they referred to different officers. notably, the deaf husband was purposely selected because he was and still is a support system to his uneducated deaf wife who gave birth to two children, so he escorted and supported his wife during antenatal and childbirth processes. the wife requested a follow-up interview with her husband to also inform the study. two female sign language interpreters were also identified and recruited based on knowledge of ugandan sign language (ugsl) and working experience in the deaf community to inform the study. additionally, sign interpreters used key informants’ protocols. the ability to communicate in sign language was a priority because it is the native language for the deaf. this study was carried out from september 2023 to january 2024. it should be noted that after the data collection process, all the participants were remunerated for their time and transport refund per uncst act, 2000 cap 209. data collection and analysis the fgds and interviews were composed of both semi-structured and open-ended questions regarding awareness and practices of maternal health services (antenatal, post-natal and childbirth). the study utilised 10 fgds, consisting of 5 participants in each group, which lasted for 1 h. however, among the 50 women and girls, 8 participants requested for follow-up in-depth interviews because of the sensitive information that they withheld during the fgds. among these participants were 2 deaf girls and 6 deaf women, and the interview lasted for 45 min per person. during the interviews, key informants opted for interviews, because of their busy schedules, in their offices. the key informants were also given the consent form for review in advance before meeting for an interview. at all times, the study maintained the participants’ privacy and confidentiality and ensured that all participants knew that they were allowed to withdraw if they chose to do so. it was important to explain to the key informants and participants the research and its expectations to seek their consent before pursuing the interviews and fgds of collecting data. video tapes were used with participants’ permission to record discussions in the focus group. all sessions were conducted by female research assistants. i also helped the assistants when technical or terminological issues were needed for clarification. the research team members were all native signers, so all focus group sessions were conducted in sign language (sl). additionally, we used ‘simultaneous method’ in sign language, which required conveying information by speaking and signing at the same time, using both spoken language and sign language simultaneously to communicate with the participants (lutalo-kiingi 2014). being native signers and members of the deaf community in uganda made it easy to create a mutual understanding with the participants and created a comfortable environment to share their experiences on mhrs and services. transcription of the data from the hard disk drive was done in two steps: partial transcription and full transcription. the first step, partial transcription, involved viewing the videos from all the focus groups and interviews to identify and transcribe information that had been raised by participants and respondents. the second step was a full transcription of the videos. i extensively reviewed the video discussions and field notes. as concepts and themes emerged, coding and organising data to identify different themes and their relationships between them were developed and applied on the transcript. reliability and validity of the findings the study pre-tested the research protocols in one selected deaf institution, namely ‘deaf action, uganda under immanuel church for the deaf in makerere kikoni, kampala’. this process helped to identify issues like the use of charts and pictures for clear explanations. it further helped to determine how this group would respond to the study design and research questions, which reduced the challenges, errors, risks and reliability in the subsequent study. furthermore, data triangulation was used in this study to strengthen the validity of the findings. for instance, this study used three methods of data collection (interviews, fgds and document analysis). during this process, the study compared results from different sources to check the consistency of the findings. my reflexivity stems from being a ugsl interpreter who holds a diploma in ugsl from kyambogo university and a certificate in ugsl from the centre for sign language bible translation network uganda, under the unad. my experience as a sign language interpreter conducting research among deaf women was halfway easy because my educational background and experience with deaf people helped to identify as a member of this group. being able to use sign language helped to build trust with deaf women and girls, i was considered an insider, and this position did not affect the study because i was aware of possible biases. however, i always reflected on the objectives and triangulation of different methods, which i used to avoid biases. however, the uniqueness of researching the experiences of deaf people exhibits some challenges. these included slightly different sign language, especially among uneducated deaf women who used home signs; some participants narrated long stories or lengthy personal accounts that were irrelevant to the topic, but still we had to listen as professional sign language interpreters and video-record all the activities. limitations there is an absence of disaggregated data on deaf women and girls or situational analysis on their mhrs. this challenge was identified when i visited the key selected government ministries; then i requested government documents or analysis reports on deaf women and girls on mhrs and services in uganda. shockingly, i was informed that they did not have any detailed information about deaf women or girls; rather they had some information about pwds as a group. to mitigate this challenge, i administered unstructured interviews with key informants with the view of getting detailed understanding and expert knowledge on the matter. however, a healthy environment that facilitates the inclusion of deaf women and girls is urgently needed. additionally, mbale school for the deaf was and still is under investigation over corruption allegations involving school administrators manipulating student enrolment figures to secure increased funding, among other allegations. therefore, my team members were reduced, and questions relating to the population of the students were not shared. moreover, some members of staff became sick, while others had emergencies. luckily, i was able to get interviews from the students and some key informants from the school. however, the research team mitigated all these challenges by patiently following all the instructions that were offered to us. ethical considerations the study was approved by the makerere university school of public health institutional review board (makshsrec-2023-477) and registered at uganda national council for science and technology number (uncst-ss2222es). this study involved talking to deaf women and girls and other stakeholders on mhrs and services. i was aware that talking to this group of people about their lived experiences might evoke emotional stress and feelings of helplessness and cause unnecessary distress. therefore, the following ethical action steps were taken: i ensured that all study materials that relate to maternal health services at the community level (including the consent forms and charts) were translated from english to sign language (by signing, facial expression and body movements). notably, there were serious concerns about informed consent in sign language that should be written, especially during the review board (school of health science). but lutalo-kiingi (2014) explains that sign language is a natural language where people communicate using hands and bodily gestures instead of their mouths, primarily used by people who are deaf, hard of hearing or have hearing difficulty or are unable to vocalise speech and sign language interpreters. results this study was undertaken to understand the mhrs and services of the deaf women and girls in uganda, specifically those who are profoundly deaf or hard of hearing. in order to find ways of improving access to these rights and services, the following questions emerged: (1) what maternal health rights and services, awareness and practices do deaf women and girls have? (2) what are your sources of information about maternal health rights and services? (3) what contributions has the government as a duty bearer made towards implementing maternal health rights and services for deaf women and girls? the findings from the study revealed a wide range of factors that limited access to mhrs and services for the deaf women. for example, focus group findings revealed that deaf women and girls faced several challenges when accessing mhrs and services. a total of 50 participants were interviewed, yielding a response rate of 99%. this is because the participants understood and responded adequately to all the questions to inform the objectives (see table 1 for background information of the participants). table 1: background information of the participants (n = 63). what maternal health rights and services, awareness and practices do deaf women and girls have? communication barriers all 50 participants attested to the fact that they were fully aware of the need for antenatal care for pregnant women and girls. also, they understood the importance of attending antenatal clinics, but their perception of the activities during the antenatal visits differed and was misunderstood because of communication barriers. ten participants used the method of writing on paper for explanations, but they indicated that the process of writing was slow and english words were hard to write, which made communication challenging for them, especially during labour and childbirth. moreover, some participants did not like visiting the hospital with their family members, as it deprived them of their right to privacy and confidentiality. they believed that family members could gossip about the whole family: ‘i know that all pregnant women usually go to the hospital for check-ups and advice to ascertain the health status of the baby, unfortunately, such advice is adversatively directed to hearing women, but for deaf women, we don’t have sign language interpreters to explain what is going on that is why i don’t go for antenatal visits.’ (participant 2; 37 years old; fgd 5) the deaf husband stated: ‘my wife is uneducated, but she simple sl, when we go to the hospital, i communicate to the nurses by writing down. she cannot go to the hospital alone due to communication barrier.’ (participant 12; 56 years old; in-depth) lack of antenatal information and classes some deaf women indicated that they had visited health facilities for maternal health services, but a lack of antenatal information and classes targeting deaf women affected their ability to be aware of such services; for example, 20 deaf women reviewed that they were ignorant and unaware of the consequences of not having tested for hiv and aids during pregnancy, and such information about mother-to-child transmission is not tailored and available for deaf women in the health centres. these women indicated that such information is missing in their reproductive lives, and there are no tips or advice on how to care for their newborn babies, which is so risky for the baby’s health: ‘when i was pregnant my friend told me how she was informed that she infected her newborn baby with hiv [and] aids, after giving birth. she didn’t know that she had hiv [and] aids, then suddenly, her baby became sick, then they carried out different tests, and she was told so. you see, we are never informed of all these critical issues. i’m also ignorant and unaware of the consequences of not having tested for hiv [and] aids during pregnancy. there are no counselling sessions for such deaf mothers with hiv [and] aids and also a lack of awareness information about mother-to-child transmission tailored and available for deaf women in the health centres. but these services are available to hearing women.’ (participant 3; 36 years old; fgd 4) shockingly, many of these deaf women and girls did not know about mother-to-child transmission and how hiv and aids can infect the unborn baby. some of the deaf women shared that they could not afford the price of testing for hiv and aids, which further complicates their lives. although some of them received these services, they did not get any advice on the outcome of the tests, which made them ignore or avoid such tests. one participant revealed that she had been receiving few antenatal services in the health centre and mbale referral hospital, but both health centre and hospital did not have sign language interpreters or services for deaf pregnant women to explain why she needed the tests and the medications. negative attitude by the medical officers at the deaf school, girls who had experiences with maternal health care revealed negative attitudes from the health workers made it hard for the pregnant adolescents to access services in the health centre. these health workers could show a rude facial expression and questions, which made these teenagers to avoid antenatal services. a participant shared as follows: ‘two years ago, i became pregnant then i went to the health centre for advice. instead i was treated so badly. i cannot tell what she was saying but basing on her facial expression and pointing to my stomach. i realised that it was a mistake approaching this place. so i panicked and run away.’ (participant 4; 17 years old; in-depth) the school administrator shared as follows: ‘[s]ome girls became pregnant and gave birth at a very young age due to a lack of sex education. the challenge is that teenage pregnancies also affected the deaf girls in this district, but i was not investigated. i think government should also consider including deaf related programmes especially on maternal health services, because they are left out.’ (participant 6; 48 years old; key) moreover, the executive from the unad also shared that there are no maternal health policies that have included the linguistic needs of deaf women and girls, which have totally excluded the deaf. similarly, the cdo revealed that (gimono 2025:123): [t]here are no maternal health programmes at the district and local councils that target the deaf women in the communities apart from the general programmes that engage all pwds at the community level. (participant 7; 42 years old; key) he revealed how he had never thought of how they access health services without sign language interpreters and wondered how they get the required services. when i further interviewed the government departments, they revealed that there is no specific law or policies enacted to cater for the deaf community’s needs, except for the persons with disabilities act 2020, which combines and generalises all the interests of all pwds in uganda. sign language interpreters all participants and health workers shared that there are no sign language interpreters in the health centre, which makes it difficult for the deaf women to communicate with the health workers. a health worker noted: ‘it is true, we do not have sl interpreters in this health centre which make our work difficult to work on the deaf people. i think government through ministry of health should think about deaf pregnant women and girls.’ (participant 8; 46 years old; key) one deaf woman noted: ‘i was given the medicine when i was pregnant, but there were no explanations on how and when to take the medicine. i just took it by guessing. we need sl interpreters to help us understand what the nurse is explaining to avoid overdose which can lead to miscarriage.’ (participant 5; 29 years old; in-depth) these findings show that a lack of antenatal care and medication instructions for deaf women can lead to significantly increased risks of complications during pregnancy and childbirth, which can lead to maternal mortality and infant mortality. what are the sources of information about maternal health rights and services? focus group discussion participants and interviewees identified deaf friends, siblings and some health workers as the main sources of information on maternal health services. however, most adolescents, especially those in school, relied mostly on their deaf peers and grandparents for information on maternal health. (source of information on antenatal and postnatal services among deaf women and girls; see table 2.) table 2: source of information on antenatal and post-natal services among deaf women and girls. out of 50 participants, 40 participants reported friends and family members as their source of information about antenatal and postnatal care. a total of 10 participants did not have any source of information because they were teenage mothers who did not seek any advice because of fear of being thrown out of their parents’ homes. among these women and girls, 25 women confirmed family and friends were their source of information, while 15 girls also confirmed the same: ‘since there was no detailed information on antenatal care and even after birth. i only rely on my husband. the problem is my husband is also deaf, but he can write. you see this process is so slow especially when i was ready to give birth. i could not wait. as my husband was writing down, i was busy pushing the baby on the floor. the nurses just look at us waiting to see, what he is writing or walk away. but i go with my husband.’ (participant 1; 33 years old; in-depth) ‘my fellow friends with children advised me, when i’m pregnant.’ (participant 4; 23 years old; fgd 3) all participants suggested that the government should employ sign language interpreters in all health centres and hospitals in uganda, especially female sign language interpreters in all health centres, to work on sensitive issues of maternal health for deaf women and girls. it is vital to improve communication accessibility between the health providers and promote deaf epistemology (deaf way of thinking) in the health sector to improve better service delivery. what contributions has the government as a duty bearer made towards implementing maternal health rights and services of deaf women and girls? this question was set to determine the contributions made by the government of uganda in meeting its duties as a state party to the international human rights frameworks, standards and principles, and how duty bearers’ performance deviates from the ideal norm. therefore, any revealed gaps may need to be resolved before rights can be realised and accessed, and it is important for the identification of areas in need of contribution from duty bearers to address the various challenges of accessibility and services. this objective was achieved through the process of interviewing key informants from government officers and other stakeholders working in the deaf community, including the ministry of health; ministry of education and sports; ministry of gender, labour and social development; deaf school; unad and cdo. the major challenge reported was limited funds allocated to these ministries to promote and create awareness of maternal health programmes among deaf people. moreover, it was further pointed out that because of a lack of empirical research on deaf women’s reproductive health care, it is hard to plan for such a group on such issues. as affirmed by the executive officers. the ministry of health executive officer stated: ‘we are allocated limited funds which are directed to do specific programmes. remember, these funds are given based on the activities forwarded by each ministry. so creating awareness is done in the general and universally acceptable methods. we do not provide special care for the deaf people.’ (participant 9; aged 54 years old; key) the unad executive officer stated: ‘there is an urgent need to conduct empirical studies on maternal mortality results and teenage pregnancies among deaf women and girls. currently, there is no research speaking about the voices of these women on their maternal health rights and services.’ (participant 10; 48 years old; key) the ministry of gender executive officer stated: ‘there are no clear statistics on the population of deaf people. most of the strategies and policies we make, generalise all those people in one group as “persons with disabilities, pwds.”’ (participant 11; 46 years old; key) these findings indicate that deaf girls need a lot of care and support from the government, counsellors, interpreters, parents, teachers and the community. one could, therefore, be optimistic and conclude that with the support of the government, counsellors, ugsl interpreters, teachers, parents and the community, adolescents would access the information they need to protect themselves from sexual and reproductive health (srh) problems. once informed, adolescents too can play an important role in passing on the information to their peers. this will potentially help in reducing the number of unintended teenage pregnancies that have increased, according to the current unicef (2019), ubos (2016) and united nations population fund (unfpa) statistics of 2012 (ubos & icf 2018), aids and sexually transmitted infection (sti) incidence among adolescents in uganda. this chapter has shown the influences on accessing maternal health care and services for deaf women and girls. communication barriers, negative attitudes, lack of maternal information tailored for deaf women and lack of sign language were identified as influences that prevented deaf women from accessing maternal health services. among sources of maternal information, it was revealed that relatives and friends provided critical support in creating awareness of maternal health issues. discussion in this study, satisfaction and accessibility of mhrs and services, especially antenatal care and clinic services among deaf women, were relatively low. the findings revealed deaf women’s dissatisfaction with maternal health care and services that were associated with lack of accessible antenatal information in sign language, communication barriers, lack of sl interpreters and negative attitudes by the health workers towards the deaf pregnant women. these findings are consistent with previous studies, which showed that the would-be mothers were dissatisfied with the antenatal services rendered by physicians, midwives and nurses and other allied health care workers when compared with the hearing pregnant women who attended the same clinics for antenatal care (adigun & mngomezulu 2020; o’hearn 2006). as noted by adigun and mngomezulu (2020), ineffective two-way communication and the interaction between deaf patients and the midwives and/or their physicians had negatively impacted their experiences at the clinics. mitra et al. (2020) revealed that deaf women frequently struggle with healthcare communication, and this may be a potential driver for some of the disparities that were identified. moreover, awareness and access to information about maternal health services are one important component of decision-making in reproductive health (mitra et al. 2020). women’s awareness of their right to access maternal health information in accessible formats contributes to empowerment and the ability to make informed choices regarding the utilisation of available services (adigun & mngomezulu 2020). the findings of the study also show a low level of awareness of strategies and accessible formats about the right to access maternal health services among deaf women because of inadequate interpretation services in the health centres. in addition, inadequate interpretation of maternal health services among deaf women and girls has previously been cited as one of the challenges (adigun & mngomezulu 2020; gichane et al. 2017; mitra et al. 2020), yet the ability of deaf women and girls to assert their rights and demand services from their society is dependent on their capacity to communicate effectively with others (mitra et al. 2020). the current study showed that the communication barrier between deaf women and health workers still exists. in my view, these deaf women tried to seek antenatal services from the health centres but were not aware of the communication challenge and how it would impact their pregnancy and childbirth. these findings call for the application of the hrba principles of accessibility, acceptability, availability and quality to identify and monitor all sexual and reproductive health rights (srhr) practices from the perspective of access and equality for deaf women and girls (unfpa 2019; who 2012). indeed, the current study showed that deaf pregnant women seeking antenatal and postnatal care and childbirth failed to understand the medical officers when accessing maternal health information, medical instructions during childbirth and the prescribed antenatal medication because of inadequate communication modes that are not in sign language. as noted in previous research, much of the information given during antenatal visits is largely presented verbally, which deprives deaf women of essential antenatal information (adigun & mngomezulu 2020). it is, therefore, assumed that deaf women and adolescent girls are likely to be marginalised and excluded from accessing adequate reproductive health information from midwives and other health practitioners because communication modes are not in sign language (human rights watch 2010; adigun & mngomezulu 2020). however, this study also found that deaf women struggled to understand the importance of seeking antenatal services during pregnancy and delivery because of the lack of special corners that meet their needs. the silence and stigma around maternal health care issues might prevent deaf women from articulating their needs, let alone seeking services. this omission may be one of the factors that prevented these women from accessing these services and forced them to stay at their homes until childbirth. certainly, this predisposes these deaf pregnant mothers and girls to life-threatening conditions, including loss of lives. one of the major concerns of the social model of disability is to eliminate social barriers that limit deaf women from active participation and inclusion in maternal rights and care. this model emphasises the need to uphold maternal rights and ensure proper and effective services required by the deaf community, such as the availability of sign language interpreters during the antenatal sessions in the health centres. shockingly, it was revealed that deaf pregnant women rarely go for hiv and aids testing because they did not know its importance, and those who had hiv and aids did not know where to access the medication and counselling. such social barriers can intensify the risk of pregnancy complications and mother-to-child transmission. shakespeare (2010) argues that the social model is a ‘practical tool, not a theory, an idea or a concept’; rather, it demonstrates that the problems disabled people face are the result of social oppression and exclusion, not their deficits. this places the moral responsibility on society to remove the burdens that have been imposed and to enable disabled people to participate (shakespeare 2010). it is further reflected that the state has the responsibility to address socially created obstacles to ensure full respect for the dignity and equal rights of all persons. although this approach calls for inclusive societies to ‘value difference and respects the dignity and equality of all human beings regardless of difference’ (shakespeare 2010), there is still more need to be done to fulfil these objectives. as already shown in this study, the principles of social model of disability in the lives of the deaf community and spaces are yet to be fully realised and achieved. it was revealed that all policies and strategies on mhrs are made for everyone in uganda (one-size-fits-all). it was further voiced that there are no special needs policies or strategies and programmes that are made for deaf people. this shows that the government of uganda has neglected its international and regional human rights obligations. the absence of targeted policies and programmes towards deaf individuals can lead to increased societal stigma and discrimination surrounding their disability and sexuality. it is therefore necessary for the government to design laws and policies that do not contradict international human rights obligations. the absence of deaf epistemology in policy-making processes, research and maternal health education means that their specific needs and rights may not be adequately addressed. it is through the deaf way of knowing their lived experiences, stories and advice that effective and appropriate laws, policies, research and programmes will meet the needs of the deaf people in uganda. inadequate sl interpretation of maternal health services among deaf women has previously been cited as one of the challenges (gichane et al. 2017; adigun et al. 2021); yet the ability of deaf women and girls to assert their rights and demand services from their society is dependent on their capacity to communicate effectively with others (adigun et al. 2021). the current study showed that the communication barrier between deaf women and health workers still exists. in my view, these deaf women tried to seek antenatal services from the health centres but were not aware of the communication challenge and how it would impact their pregnancy and childbirth. these findings call for government as the duty-bearer to apply the hrba to promote participation and empowerment of these women to claim their rights and actively engage in their maternal health decision-making processes (unfpa 2019; who 2012). the hrba contains four key human rights-based preconditions needed for srhr: aaaq (unfpa 2019). this means that healthcare facilities, goods and services must be sufficiently and continuously available for all people who need these services. although the human rights-based principles require that these services need to be affordable and accessible for all in a non-discriminatory manner and culturally appropriate and sensitive to the issues of gender, age, disability and other characteristics (undp 2006), the current study shows that there is more that needs to be done in fulfilling these needs and standards. from the human rights point of view, it could be concluded that denying access to maternal health services, hiv testing, lack of participation and inclusion of deaf women and girls in their antenatal and childbirth processes is a violation of their reproductive rights as provided in the ugandan constitution, 1995, under article 33(3), which reveals that ‘the state shall protect women and their rights, taking into account their unique status and natural maternal functions in society’. this study shows that the human rights standards of aaaq of antenatal and postnatal care among this group are perceived to be lacking in the ugandan health sector. for instance, while the who recommends at least four ante-natal visits during pregnancy and that post-natal care must be in place within 2 days of the birth, deaf mothers and adolescent mothers reported several instances where they did not access ante-natal and postnatal services. this could be attributed to a lack of awareness programmes, communication barriers, a lack of sign language interpreters and the unavailability of skilled personnel in health facilities to guarantee safe delivery to expectant deaf women and girls. in summary, the hrba reveals that the right of every girl and woman to health is not only about providing technical health care and services but also entails girls’ and women’s empowerment and enabling them to have the freedoms and entitlements. they need to exercise autonomy and agency over their lives and bodies and decide freely and responsibly on all matters directly or indirectly related to their health, free from violence and discrimination. in light of the findings of this study, more effort is needed to promote deaf epistemology. it is through the ‘deaf way of knowing’ that evidence-based strategies will be made to improve maternal services among deaf women and girls. therefore, deaf epistemology is an opportunity for society to understand clearly ‘deaf ways of being in the world, of conceiving that world and their place within it, both in actuality and in potentiality’. this paradigm should be considered as a valuable tool in developing policies and practices aimed at improved quality of maternal health among this group. policy and programmatic implications the findings of the study have important implications for policy-making and programme design. deaf women and girls use sign language as the only way of communication, which is often overlooked in maternal health policy-making, programme designing and service delivery. the overlook of these needs has created drastic barriers and hindered accessibility to maternal health services for this group. therefore, there is a need to include sl interpreters in the public service commission so that they are fully posted in each health centre, just like the medical officers for speedy and smooth service delivery. recommendations deaf women and girls suggested that the government should adopt innovative means of dissemination of maternal health information that is tailored to their linguistic needs. this is because deaf people listen with their eyes. therefore, visual materials are the most useful tools to communicate and receive information. for instance, posters together with drawings and displays of maternal pictures in all health centres; drama plays at community levels, health centres and places of worship and the use of dolls as awareness materials for demonstration in antenatal classes at health centres. moreover, efforts to promote maternal health among deaf women require the government to integrate human rights principles in different phases of the programming, including assessment and analysis, programme planning and design, implementation, monitoring and evaluation. human rights-based approach offers a mechanism which ensures that rights-holders claim their rights while duty-bearers fulfil their obligations to realise these rights. in policy terms, the government should also integrate the social model of disability in all its programmes, strategies and policies because it is an essential model that calls for equal opportunities, the elimination of barriers that limit pwds from participating and decision-making in their reproductive rights. conclusion the study findings suggest that serious challenges lie ahead in the provision of safe motherhood information for deaf women and girls in uganda. despite uganda’s legal frameworks on mhrs, deaf women and girls’ linguistic needs are yet to be incorporated into the ugandan health sector. current healthcare provisions do not always meet their needs during maternal services. therefore, visible and constructive policies are necessary to steer deaf mhrs and services. in other words, further research is needed to understand hiv and aids awareness, antiretro-viral drugs (arv) and counselling for services to deaf pregnant women. this can increase hiv and aids awareness, advocacy and support for deaf pregnant women. acknowledgements the author would like to thank mbale school for the deaf, busamaga village council leadership, the sign language interpreters, deaf women and girls and the entire deaf community in uganda, and individuals, who in various ways, contributed to the success of this study. the author also acknowledges the invaluable contribution from mawazo institute and its partners in supporting this research that has been instrumental in enabling the author to achieve this publication. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contribution e.m.a.g. is the sole author of this research article. funding information this research received financial assistance from hon. justice lubega farouq, the makerere university research innovation fund, archiving, memory and methods from the global south (andrew mellon foundation), makerere university and house of zakka and waqif, uganda, who contributed significantly to the completion of this study. data availability the data that support the findings of this study are openly available and contained in the article. disclaimer the views and opinions expressed in this article are those of the author and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, 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rights-based approach to development cooperation and programming: a undp capacity development resource capacity development group bureau for development policy, viewed 27 september 2022, from https://www.undp.org/publications/human-rights-based-approach-development-cooperation. world health organization (who), 2012, maternal health, viewed 18 february 2022, from https://www.who.int/health-topics/maternal-health#tab=tab_1. abstract introduction aim and objectives community development projects research methods and design trustworthiness results discussion and implications of findings conclusion and recommendations acknowledgements references about the author(s) brian tigere turfloop graduate school of leadership, faculty of management and law, university of limpopo, polokwane, south africa theresa moyo turfloop graduate school of leadership, faculty of management and law, university of limpopo, polokwane, south africa citation tigere, b. & moyo, t., 2022, ‘disability-inclusive community development: a case of a community garden in limpopo province in south africa’, african journal of disability 11(0), a850. https://doi.org/10.4102/ajod.v11i0.850 original research disability-inclusive community development: a case of a community garden in limpopo province in south africa brian tigere, theresa moyo received: 09 feb. 2021; accepted: 16 sept. 2021; published: 06 jan. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: persons with disabilities living in rural areas are marginalised and excluded in most developmental initiatives in south africa. they face many economic, political and social problems; hence, improving their quality of life is a daunting and challenging task which needs interventions from both the state and non-governmental stakeholders. objectives: this study aimed to examine the role played by community gardens in rural limpopo province in uplifting the lives of persons living with disabilities as well as their communities as a whole. its main objectives were to assess the social and economic benefits they have provided to this group of people. method: a qualitative research design was used for this study. twenty-one participants were identified through purposive sampling. they were made up of people with disabilities, officials from departments of agriculture and social development. face-to-face interviews were used to collect data which was analysed thematically. results: key results were that community gardens have contributed to the economic and social well-being of persons with disabilities. they have assisted them with income to supplement their social grants. they also created jobs for their members and contributed to improved livelihoods of their families. conclusion: the study demonstrated that people with disabilities are capable people who, if given the necessary support, can transform their livelihoods both socially and economically. the study recommends that a disability access audit be conducted to resolve the accessibility challenges of the garden. keywords: disability-inclusive community development; persons living with disabilities; community development; community gardens; disability and development; livelihoods; accessibility. introduction community development programmes are widely seen as a common strategy in uplifting the standards of living in poor rural and urban communities in the world and africa in particular. swanepoel and de beer (2012:23) describe community development as a social transformation that involves changes in the awareness, motivation and behaviour of individuals and in the relations between individuals as well as between groups within the society. they emphasise that these changes have to originate from or be rooted from within individuals or groups rather than being externally driven. this insider conceptualisation is shared by sharma (2013:183) who argue that community development has to be at grassroots level because that is where communities reside. he also qualifies ‘change’ from a broad perspective, that, essentially, consists of economic, social and cultural improvement of a community. green and haines (2015:3) articulate the objectives of community development in terms of eradicating unemployment and poverty and also reducing the inequalities in power relations amongst different classes of people in the society in order to reduce inequalities. the definition by ndlovu (2012:8) emphasises community development as a joint effort between communities, government and other stakeholders, with the objective of improving the socio-economic and cultural conditions of a community. ndlovu (2012:14) also adds that the process has to be participatory in terms of ensuring that the people who are expected to benefit from the process, should be fully involved at all levels, such as for example, the origination, design and implementation of a community initiative. each of the above definitions have merit in that they bring to the table, critical components of community development. integrating the different elements, community development is a participatory, multi-stakeholder process which is defined and driven by the community for the purpose of achieving transformative socio-economic and cultural change for its members. this integrated view enabled the authors to critically analyse the impact of community gardens on people living with disabilities. certain groups such as persons living with disabilities are often marginalised from such initiatives. therefore, they will not get their intended benefits unless deliberate efforts are made to ensure their full participation and integration of their interests into the design and implementation of the community development initiatives. aim and objectives the aim of the study was to examine the role played by community gardens in rural limpopo province in uplifting the lives of persons living with disabilities as well as their communities as a whole. its main objectives were to assess the social and economic benefits they have provided to this group of people. another objective was to find out the role of these gardens in alleviating poverty, on a sustainable basis, amongst persons with disabilities. there were two key questions that guided the analysis. the first was as follows: is the community garden project model an effective strategy for community development with a focus on people living with disabilities? the second question was the following: is the community garden model a sustainable approach for the development of persons living with disabilities? the area in which the study was undertaken has a small population of 108 321 (statistics south africa [stats sa] 2016). however, the number of persons with disabilities living in the area is not known. community development projects according to westoby (2014), community development projects (cdps) aim to improve the social, environmental, and economic situation of people especially in rural communities. in south africa, these projects took different forms. originating in the colonial era, they included agriculture, animal husbandry, public health, education, as well as small scale industries (singh & chudasama 2020). as observed by de beer and swanepoel (2012:3), their colonial legacy is evident in that essentially, they were designed more as measures for poverty alleviation rather than for achieving socio-economic transformation. generally, income generating projects focus on poor communities, with the aim of creating opportunities to the local population. chambers and conway (1992) in united nations development programme (undp 2017:3) maintain that community development initiatives are a source of sustaining improved livelihoods amongst community members. olivier (2019:21) also opined that ownership and partaking in a community garden makes important contributions to improved and sustainable livelihoods including enhanced social status in a community attributed through financial income. disability as an issue in development disability has been at the periphery of developmental policy formulation and implementation (dube & charowa 2005:7). this has led to both formal and informal discrimination and exclusion of persons with disabilities in developmental activities (grech 2015:31). formal discrimination occurs when developmental policies are silent on disabilities or do not include persons with disabilities in their formulation. informal discrimination happens when society discriminates against persons with disabilities by preventing them from participating in community development. this may include inaccessible projects which directly hampers the participation of persons with disabilities. the united nations convention on the rights of persons with disabilities (uncrdp) of 2006, of which south africa is a signatory, acknowledges that persons with disabilities have the same rights like any other person. the convention on the rights of persons with disabilities (crpd) bases its notion on articles which gives liberties in rights to education, participation, health as well as access to equal opportunities (grech 2015). human rights advocates claim that persons with disabilities are entitled to the same liberties as those without disabilities, without exceptions (johnstone et al. 2012). as observed by rohwerder (2018), many african countries have people living with disabilities, often caused by communicable diseases, poverty, famine and armed conflicts. the situation of people living with disabilities is compounded by social prejudices and some cultural beliefs and attitudes that denigrate them. consequently, they are often left out of development (adeola 2015:227). however, there are no accurate and recent statistics on the prevalence of disability in africa. south africa is one of the few countries with detailed statistics on this. out of its 57 million citizens, about 5.7% are said to be living with a disability in south africa (stats sa 2016). the inclusion of persons with disabilities is a topical issue in africa’s development because generally, they tend to experience discrimination and marginalisation from both community and international development efforts (palmer 2012:217). their development is being inhibited by the kind of approaches which countries adopt in relation to them. in many african countries, the approach tends to be welfarist rather than developmental. they implicitly portray disability as incapacity that can only be addressed through social welfare. a popular perception is that people with disabilities just require handouts and support because they are not able to contribute meaningfully to development (tigere & moyo 2019:6). accordingly, they are not empowered to fully develop themselves and move out of poverty. in south africa, for instance, the state provides a disability grant because most of the people with disabilities are unable to secure formal jobs. unfortunately, some grant recipients have become dependent on the grant, instead of pursuing more independent sources of livelihood. this welfarism is one of the obstacles to the full empowerment of persons with disabilities. this observation is supported by lopes (2019) who argues that disability grants in south africa have created a perception that persons with disabilities are better off with the financial handouts from the state. the social model which the study utilised regards disability to be a result of the way society is organised. beaudry (2016:215) advances a social model of disability which is a framework that conceptualises disability as a socially constructed problem. the author argues that persons with disabilities are as human as any able-bodied person and like everyone else, they should be fully integrated into society. anastasiou and kauffman (2013:442) advocate the need to address the economic, environmental and cultural barriers encountered by people who are viewed by others as ‘having some form of impairment whether physical, sensory or intellectual’. disability friendly community development projects westoby (2014) is of the view that cdps are aimed at improving communities by planning and executing developmental programmes. they focus on improving the social, environmental, and economic situation of people especially in rural communities. in south africa, cdps came in different ways which included agriculture, animal husbandry, public health, education, as well as small scale industries which had a colonial legacy (de beer & swanepoel 2012:3). this view is corroborated by ndlovu (2012:13), who states that cdps in south africa took the shape of income generating activities such as home economics, sewing, wood work and particularly gardening. it is quite clear from historical evidence that the cdps were designed to alleviate poverty but not really change the status quo in terms of racial inequality which was rooted in political, economic and social inequality. the origin of disability friendly cdps in south africa also dates back to the apartheid era. the disability cdps were viewed as accessible places of income generating activities such as gardening, woodwork or sewing and accommodate every disability of a person. the attempt was to take into account the peculiar needs of persons with disabilities. the model was based on the notion that persons with disabilities have faced historic barriers in cdps in which most able-bodied persons participate (johnstone et al. 2012:109). during the apartheid era, separate development for races was established. the black population which accounted for 80% citizens, suffered from the established oppression resulting in extreme poverty. this led to a crisis where marginalised groups such as persons with disabilities suffered greatly (fish hodgson 2018). in essence, they were also caught up in a deeply divided and unequal society (schnitzler 2020). like most black people, black people with disabilities were marginalised and excluded from the mainstream economy as compared to their privileged white counterparts. the experiences were therefore different between black and white disabled persons. with the advent of democracy in 1994, cdps became more organised and funded through firstly the department of social welfare and local government and then later the department of social development as a poverty alleviation tool (shah 2016). unfortunately, although this model has been used as a strategy of community development without transforming it so that it addresses the fundamental root causes of inequality in south african society, causes which include but are not limited to inequality in access to productive resources, education and skills as well as access to finance. a case of a community garden the main objective of this study was to examine whether community gardens for persons with disabilities, as a strategy of community development, have made any significant impact in enhancing inclusive community development. the persons living with disabilities in the study area decided to start a community garden mainly because of the benefits they saw. these benefits include a source of income, food security and also improving their livelihoods. they also saw it fit to do gardening because their functional limitations would suit agricultural activities. the project was started together with community members. it is registered under the non-profit act of 1997. the able-bodied community members were drafted to work in administration as they were perceived to be knowledgeable of the management of projects. governmental departments play a supporting role for the community gardening. for instance, the department of social development is the custodian of the programme on persons with disabilities and it provides minimal financial subsidy to cater for the administrative costs such as office equipment, food and electricity. the land was given by the local traditional authority office and is owned by the persons with disabilities who own the community garden. the group has title deeds for the land as reflected on the nonprofit organisation (npo) certificate. under the npo act of 1997, any organisation which registers under the act must be run by a board committee which appoints the management to run the day to day business. in the case of the community garden, the board is non-functional and is actually controlled by the management. this is a common problem in many projects of similar nature. this study was motivated by an interest to assess the impact on project beneficiaries, of a community garden that was initiated by people living with disabilities. this was a registered npo project in which the land was allocated by a traditional authority. in our opinion, it had the potential to empower the members because, unlike traditional cdps described above, the ownership of a resource like land and control by the members, were fundamental factors in achieving economic and social transformation of the members. research methods and design a qualitative research approach was utilised for the study because the researchers were interested in understanding the impact of these projects from the perspective of the persons living with disabilities. according to lewis (2015:473), the qualitative research approach allows researchers to gain an in-depth understanding of human behaviour and factors that govern it. the experience survey was used in the study. kothari (2004:36) explain this type of survey as a survey of people who have had practical experience with the problem to be studied. the population of the study was 66 community members who are engaged in community gardening. the study was only interested in the community garden which caters for persons with physical disabilities. thus, the study sample was selected from persons with physical disabilities working at a community garden in some local municipality in limpopo province of south africa. it was also important to include two management personnel because they had useful insights on the day-to-day running of the garden. the sample size was 21 participants (see table 1). nineteen were persons with disabilities. the inclusion criterion was that participants should be persons with disabilities (paraplegics, hemiplegics) of all genders. for those from outside the gardens, there were two persons from the community, namely the project manager and the administrator. the officials were selected on the basis that they were working closely with the community garden projects. table 1: biological profile of the study participants. the researchers utilised purposive sampling. therefore, the researcher decided on what need to be known and set out to find people who can and are willing to provide the information by virtue of knowledge and experience. after seeking the permission to conduct the study in the area and also after explaining the details of the study to the participants in the community garden, the researcher purposefully selected the 21 in such a way as to include males and females, the young and the old. face-to-face interviews were utilised to gather data. kothari (2004) opined that face-to-face interview is a data collection method whereby a researcher communicates directly with a participant to solicit information guided by a questionnaire. the choice of this method was that it allowed for confidentiality and privacy. consistent with the principles of ensuring no harm to research participants, it was important to protect each participant from any possible harm that might arise as a result of expressing their true opinions on the issues that were to be discussed. because this was a qualitative case study design, thematic analysis was applied to analyse the data collected from the face-to-face interviews. interview responses were recorded by video after seeking permission from the participants. firstly, data was translated from the original recordings. translation (from se sotho to english) was done because most interviews were carried out in the native language. kothari (2004:122) defines this stage as editing whereby a careful scrutiny of the data recorded in interviews is done to assure that the data is accurate. they were then transcribed into a word document. secondly, data was coded to identify key factors such as words, sentences and meanings. lewis (2015) is of the view that coding is the link between data collection and explanation of its meaning. maxqda software was used for the coding process. the transcribed interview data was imported into maxqda as a word document. the researchers went through the text paragraph by paragraph and attached labels or codes to the text, based on their understanding of what the participants were saying. these codes were divided into main (parent) and sub-codes, the latter reflecting that they were related to the main idea in a text. these codes were then grouped together to identify emerging themes from the data. these themes became the basis for the presentation of results and discussion. the software also made it easy for the researchers to extract direct quotes from some participants on the issues that we thought were central to the focus of the study. our understanding of thematic analysis was informed by the work of williams and moser (2019) who define coding in qualitative research as being comprised of ‘processes that enable collected data to be assembled, categorized, and thematically sorted, providing an organized platform for the construction of meaning’. they also explain that coding reveal themes that are embedded data and that this allowed for meaning to be negotiated, codified, and presented. trustworthiness denzin and lincoln (2011:44) are of the view that, ‘in any study, the findings must be believable, consistent, applicable and credible if they are to be useful to readers and other researchers’. to ensure trustworthiness of the study findings, credibility, applicability, consistency and neutrality criteria were utilised. shenton (2004:35) notes that ‘credibility refers to demonstrating that the inquiry in a study was conducted in such a manner that the subject was accurately identified and described’. to ensure credibility, the qualitative methodology utilised in the study was clearly laid down. in the study, face-to-face interviews were utilised after the participants were chosen through purposive sampling. transferability was achieved in the study through giving a detailed background of the study area which is molemole local municipality of limpopo province. this allows readers and other researchers to relate the findings with other similar study areas. shenton (2004:36) opined that, ‘dependability entails that researchers should at least strive to enable future investigators to repeat the study’. dependability was achieved through giving a detailed research design which gave tools utilised for data collection as well as its interpretation. conformability refers to the objectivity of the study during data collection and analysis (denzin & lincoln 2011:45). conformability in the study was achieved through safekeeping of the data collected for other researchers to agree or corroborate with the findings when required. ethical considerations several ethical obligations were met by the researchers in this study. permission was sought from the university which the study had jurisdiction. an ethics clearance certificate was issued as proof of approval for the study to be carried out. the study was approved by turfloop research ethics committee of university of limpopo, reference number: trec/204/2018/pg. confidentiality was also preserved in the study through the use of pseudonyms to identify the participants. informed consent as well as voluntary participation was ensured through the signing of consent forms by all the participants. as a way of ensuring voluntary participation, the participants were told that they can withdraw at any stage of the study without any consequences. results the results emanate from rich qualitative data gathered from interviews conducted with 21 participants. the key questions posed at the beginning of the study guided the presentation and discussion of results. the presentation is divided into three sections: (1) is the community garden project model an effective strategy for community development with a focus on people living with disabilities?; (2) is the community garden model a sustainable approach for the development of persons living with disabilities? and, (3) discussion and implications of findings. is the community garden project model an effective strategy for community development with a focus on people living with disabilities? in this part of the presentation of findings, the researchers report on the nature of the community gardening projects, how they are managed, how they are operating and what benefits (if any) are being realised by persons living with disabilities. the selection of the sub-headings was informed by the identified themes after coding interview transcripts. some key themes were gardening as a source of income; a source of livelihoods; a source of employment. other themes were as follows: management, decision-making, participation, social cohesion, technical design of gardens, sustainability. these guided the presentation of findings. nature of gardening projects at the case study community garden the findings of the study revealed the importance of integrating the interests of persons living with disabilities in cdps. frustrated by their exclusion from some of the development initiatives in their areas, the community of persons living with disabilities decided to establish a community garden with the design features that were suited for them. the community garden under the study has many gardening projects which are being undertaken simultaneously. they involve what the participants highlighted as the green projects, where all plant production takes place. the green project is subdivided into the vegetable section, which grows a variety of fresh vegetables all year round such as cabbages, carrots as well as two varieties of spinach, namely savoy and chinese. these two varieties of spinach are grown throughout the year and are responsible for almost half of the income of the garden. beetroot and butternuts are also grown at the garden and are mostly seasonal, with extensive growth in summer for the december holiday markets. the last project of the garden is the animal husbandry section where chicken rearing takes place. layers for eggs and broilers for meat are kept all year round and bring a steady income to the centre. the different types of gardening projects are shown in table 2. table 2: different types of gardening projects as well as produce at the case study community garden between 2018 and 2019. origin of the idea of community gardens the interviews with the participants confirmed that the idea of community gardens was started by the persons with disabilities who reside in the study area when they saw a need for income generation amongst themselves. this is reflected in the following responses of some participants: ‘we just came up with the idea of a gardening project after realising that we are just sitting home and doing nothing.’ (participant 5, female, 28 years) ‘it was at a forum for us people with disabilities that we thought of supplementing our disability grants with an income generating initiative. gardening was approved by the majority of us.’ (participant 15, male, 59 years) projects as a source of income the participants explained that on average, they get roughly r1000.00 per month each. however, there are factors which contribute to changes in income such as planting and harvesting times. for instance, in december, income is significantly higher because of sales of butternuts, carrots as well as beetroots purchased by social ‘stokvel’ groups as well as organisations for their year-end functions. therefore, entrepreneurship and rural development is promoted. the participants pointed out that their economic livelihoods have improved to a greater extent since their participation in the community garden. one of the research participants stated the following: ‘the produce is sold at the local market (schools and government departments) and some to the polokwane vegetable market. the income supplements my disability grant to some extent.’ (participant 15, male, 59 years) another participant explained: ‘we receive some of the payments or stipends after the sale of the produce. although it is not enough, it helps a bit to improve my financial conditions since sitting at home doing nothing is not good at all. half a loaf is better than nothing.’ (participant 3, male, 33 years) to some extent, the participants were able to reduce their dependence on other people because they do not have to purchase vegetables such as cabbages, spinach and tomatoes from supermarkets and shops. this acts as a saving because the finances are used for other things; hence, expenses on food are reduced. galhena, freed and maredia (2013:9) agree that generally, economic benefits of community gardens go beyond food and nutritional security at household level, especially to disadvantaged groups within communities such as the elderly, women and persons living with disabilities. the researchers noted that incomes were also constrained by limited access to markets. access to transport to enable project members to sell fresh produce at bigger places such as busy malls and taxi ranks is likely to increase their income. from our understanding of development as explained in the literature review, many members of this gardening project are able to get an income, the amounts are so low, they serve only as supplements to their disability grant. an income of r1000.00 is way below the poverty line in south africa. so, the members of this project would have to continue to depend on the disability grant. this demonstrates that the community garden project as it currently operates in the context of the case study is not a sustainable strategy for community development. livelihoods to a certain degree, there was livelihood advancement in terms of incomes received by the participants since they joined the garden. some of them explained that: ‘i am now able to get material things to improve my livelihood and that of my family since i am getting financial rewards after the sale of the garden produce. it is better and supplementing my disability grant.’ (participant 6, female, 25 years) another explained that: ‘formal employment was really difficult and elusive to come by due to my disability. ever since joining this community garden since the last 2 years, there has been a steady flow of income which has to some extent improved my situation and that of my family.’ (participant 7, female, 44 years) it is quite clear from the responses that whilst the participants are receiving income from the projects, the money received is actually not enough for their needs. they seem to accept that nonetheless, having some income is better than not having anything at all. the fact that the project is not generating enough income for the participants raises questions about the capacity of the project as a long-term solution to their development needs. indigenous knowledge preservation of gardening and persons living with disabilities persons with disabilities have developed a culture of doing gardening in ways which are unique to them as a group of special abilities. their functional abilities on gardening tasks have made them master and build their own indigenous knowledge on agricultural activities. because they are not able-bodied, their disabilities have made them to adjust and be innovative in the way they do gardening. this was reflected in the following responses of some participants: ‘we are doing the activities such as weeding according to our abilities, that is, we have to be innovative. for instance, most of the time we weed, we do not use a wheelchair but rather crawl along the bed which is faster and efficient to us. we share these innovation skills to our persons living with disabilities peers and transfer the knowledge to future generations.’ (participant 11, male, 31 years) ‘when we fertilise, we do the broadcast method which is easier and efficient for us as people with disabilities.’ (participant 13, female, 29 years) other participants also explained that one of the suggestions they would have liked to make if the management was receptive, was that the vegetable beds should be constructed such that they could be at the same level as a person in a wheelchair. that way, it would be easier for them to cultivate the crops. furthermore, wider spacing of beds would improve wheelchair access and thus, enhance the efficacy of their work. this discussion demonstrated the creative capacity of persons with disabilities. the innovative techniques they do have at their disposal to adapt their own abilities to tasks at hand no doubt add to indigenous knowledge. scholars such as ndlovu (2012:56) have also argued that the preservation of indigenous knowledge is important for community gardens. employment agriculture is predominantly labour-intensive and therefore requires manual labour. employment creation is a major positive factor to the persons living with disabilities at the community garden. although it is not formalised through employment contracts, job opportunities have been created informally. the persons living with disabilities are employed informally to work in the garden. they receive a monthly stipend in accordance with the sales of the produce. although the financial rewards are not much, the participation in the activities and its administration such as duty sheets act as employment. some of the research participants had this to say: ‘although i do not have a contract, my work hours are clocked everyday hence this leads to my stipend pay out at the end of the month.’ (participant 6, female, 25 years) ‘my duty sheet denotes my responsibilities such as weeding, feeding the chickens and if i do not do that i am breaking my employment code.’ (participant 15, male, 59 years) ‘by virtue of the fact that the community garden belongs to us persons with disabilities, this provides us with a sense of ownership and that we are doing something meaningful with our lives.’ (participant 7, female, 44 years) the responses acknowledge that although it is not formal, the community garden acts as an employer to them. ownership of the community garden provides a sense of identity and self-gratification to do something positive and meaningful with their life. strengths of the community garden the community gardens project had some positive impacts. one is that they were able to induce livelihoods for persons living with disabilities. this is because of the fact that income derived from the sales of the produce provided them with a salary. the project also provided a financial backbone to them as it supplemented the monthly disability grant provided by the state. the project also fosters social cohesion amongst its members. the project also enhanced social capital, an important component in the sustainable livelihoods approach. the concept supports this notion that groups of people are brought together to increase their social functioning. this was brought up by one participant who shared her experience in the following words: ‘at the community garden, it is not only about cultivating vegetables. it is a place where we meet as a community of persons living with disabilities and discuss issues which affect us in the larger community. this assists us to improve our social and emotional wellbeing.’ (participant 4, female, 25 years) thus, apart from economic benefits, the gardens have a positive psycho-social effect in terms of improving social and emotional well-being of the participants. is the community garden model a sustainable approach for the development of persons living with disabilities? a critical issue in community development is sustainability of any development intervention. shah (2016) is of the view that sustainability in community projects has to focus on a number of factors such as ownership and control of the project by members, participation in decision-making, fairness and equity in the distribution of benefits amongst members, size of income generated, and impact on the environment. abiona and bello (2013) saw that participation of the indigenous is key to promote sustainability of community projects. in this section, we present the results on some of these critical issues on sustainability. these focus on the ownership and control, management, decision-making and participation, technical design of the gardens and social cohesion amongst group members. ownership and control of the community garden the participants made it clear that the community garden was a registered npo and that the land was given by the local traditional authority. so, the persons living with disabilities actually own it. however, because most of them had low levels of literacy and no skills in the management of such projects, they outsourced from the more able-bodied persons from the community. the interviews indicated that there was a rift between the managers and those who were treated as employees in the projects. this rift is discussed under the following section on management and decision-making. this suggests that although they own the land, they actually do not have control over it. this situation is likely to undermine long-term sustainability of the project. management, decision-making and participation the management of the community garden comprises of two individuals who are the project manager as well as the administrator. both of these two personnel are not disabled and the researchers observed that it poses a serious issue in the inclusiveness of persons living with disabilities in designing, planning and coordination of activities. they are the ones who are only trained in community gardening. the project manager explained that: ‘the community garden is funded by the department of social development under the directorate of persons with disabilities and old age. since we are provided with a small financial subsidy, the social workers come sporadically for monitoring but operational issues are left to us since we are a nonprofit organization (npo). we as the management are responsible for the day-to-day decisions.’ (participant 21, male, 31 years) the management is solely responsible for making operational decisions. the problem, however, was the exclusion of persons living with disabilities, who are the custodians of the garden, from decision-making processes. to confirm this, some participants who are persons living with disabilities explained that: ‘we are not consulted when decisions about our work are done. issues like tasks and payments are not discussed openly with us. that compromises some of us since the schedule sometimes does not take into account our abilities.’ (participant 18, male, 47 years) ‘we do not have a representative of persons living with disabilities in the management and this creates serious challenges since no one can stand for us.’ (participant 8, female, 31 years) ‘we are just left put on key decisions which affect our work and the gardening. the management does not involve us mostly in issues which affect us directly.’ (participant 13, female, 29 years) the responses from the participants suggest that the management approach was top-down, leaving no room for full participation of members. according to swanepoel and de beer (2012:78), participation is a process and implies collective activity of interested or concerned people in achieving a jointly determined goal. nel (2015:514) corroborates this view when he argues that real participation is where community members share fully and have an equal voice in all decision-making and efforts directed towards change. clearly, participation was lacking in these projects. this is one of the factors that limit the potential of the projects as a sustainable solution to the development challenges faced by persons with disabilities. technical dimensions of the project: are they fit for purpose? the social model of disability suggests that the environment should be accessible to all persons with disabilities to participate in economic, social and political activities (grech 2015). in this study, it was observed that the community garden is not 100% accessible to wheelchair users. thus, a technical challenge that might impede long-term sustainability lies in the poor technical design of the gardens. some participants explained that they were not included to a large extent in the designing of projects at the community garden. they complained that: ‘the management does not involve us in the most important things such as the design of beds in accordance to our disabilities.’ (participant 11, male, 31 years) another said that: ‘there is a lack of consultation and participation amongst us the disabled on critical issues of accessibility in accordance to our disabilities. the management consist of people who are not disabled hence they make a lot of mistakes.’ (participant 19, female, 53 years) the lack of consultation of members resulted in some of the beds being too low for wheelchair users. this was pointed out by one participant: ‘the vegetable beds are sometimes too high or too low. they were constructed without proper consultations on our disabilities. for instance, as a paraplegic and using a wheelchair, i cannot work on other beds since they are too low.’ (participant 16, female, 61 years) an official from one of the government departments responded to the researcher concerning the complaints from participants: ‘we try to have raised beds for our vegetables for easy access of persons living with disabilities when they are going on with their work. i do admit that we only construct these raised beds from what we think is right since we do not have any technical aspects of doing it.’ (participant 21, male, 31 years) it was also observed that there were a few raised seedbeds which do not have the correct configuration for wheelchair users. consistent with the principle of ‘reasonable accommodation’ which denotes to the accessibility of working environments for persons living with disabilities, a disability audit conducted by an accessibility specialist would have been necessary. according to beaudry (2016:216), reasonable accommodation provides for the means and processes of making an environment workable by people living with disabilities. the issues of poor accessibility and low seedbeds could have been addressed if participation and consultation were done properly. social cohesion amongst group members egli, oliver and tautolo (2016) highlighted that social cohesion is important for the success of any project. social cohesion is defined as strengths of relationships and the sense of solidarity amongst members of a group or community (nettle 2014). in this case study, it was clear that there was no social cohesion. this was evident by the apparent rift between the managers and the participants who, as explained before, were persons living with disabilities. one of the participants noted the following: ‘there are two distinctive camps within the garden. one of us was the real owner of the garden and the other is the management who are responsible for administration and we are not in harmony at all. the relationship is not that good.’ (participant 9, female, 33 years) the persons living with disabilities were excluded from decision-making and did not have the opportunity to contribute their ideas on how the project could improve its performance. whilst they own the land, they are not privy to important information such as sales, revenues generated by the project and expenditures on the project. the fact that they do not seem to have capacity to engage the managers also raises questions about the future of the projects. thus, the lack of social cohesion threatens the sustainability of the project in the long-term. discussion and implications of findings the introduction of this article began by explaining the concept of development from the perspective of a number of authors. these included swanepoel and de beer (2012), sharma (2013), green and haines (2015) and ndlovu (2012), amongst others. based on this and other literature, the authors interpreted community development as a participatory, multi-stakeholder process which is defined and driven by the community for the purpose of achieving transformative socio-economic and cultural change for its members. this understanding of community development provides a useful framework within which to evaluate the impact of the community garden project on persons living with disabilities. findings from the study indicate that there were some benefits enjoyed by the participants from the garden project. some of the benefits were that the project was a source of employment for them. they also enabled them to earn a monthly salary which supplemented their disability grant. for cumbers et al. (2018:135), gardening activities, though informal, usually provide working opportunities. wise (2014:22) confirms that community gardening creates a sense of employment because income is derived, and split and shared on a timeous basis which is determined by the members. it can therefore be concluded that although employment at the community gardens is not as formal as signing employment contracts, it serves the purpose of work. some participants also indicated that the project gave them integrity and enhanced their self-worth. the projects have also increased the availability of food for persons living with disabilities and their households. the garden offers different vegetables and staples, which safeguard both food and nutritional security. other studies also confirm this positive impact of such gardens. for example, galhena et al. (2013:7) argues that community gardens are a source of income generation which empowers the less advantaged in the community through economic emancipation. egli et al. (2016:351) also argue that community gardening is less cost intensive, requires fewer inputs, and is extremely important for people who have limited access to production inputs. other participants explained that the project allowed them to network and socialise with other people living with disabilities. this had a therapeutic effect on them. for some of the participants, the community garden stimulated innovative thinking as they tried new ways of doing gardening that suited their physical circumstances. even though some of their suggestions for creating more disability-friendly gardens were never taken up by the management, they clearly showed that they are capable of innovative thinking that could contribute towards the development of indigenous knowledge. whereas cumbers et al. (2018:134) view community gardens as strategies for creating sustainable and ethical forms of living whilst also offering alternative ways of community development. in the case that was studied, the project created an opportunity for an ethical form of living. however, there are questions on the sustainability of the projects. whilst these findings clearly demonstrated some positive impacts of community gardens of persons living with disabilities, in terms of our conceptualisation of community development, the impact was limited. firstly, it was evident that the incomes generated from the project were viewed more as a supplement to their disability grant rather than as an income which could actually wean them from the grant altogether. a critical component of development is sustainability. if a project does not generate enough income to sustain a member, then it is not a sustainable solution to poverty and underdevelopment. secondly, even though the persons with disabilities own the land on which the project is operating and are actually registered as an npo, it appears that there is a hidden dynamic where, because of their limited education and skills, they outsourced managerial functions to more able-bodied community members. there is some power dynamics that resulted in loss of control by the owners, the persons living with disabilities. the loss of control was so perverse that the owners were excluded from participation in decision-making particularly on critical matters such as information on sales, project expenditures and profitability. the accessibility challenges raised by the participants also present a barrier towards sustainability of the projects in the long-term. the study found that most of the persons living with disabilities are either hemiplegic or paraplegic, and use assistive devices such as wheelchairs, crutches and special orthopaedic shoes. this therefore requires an accessible environment such that the persons living with disabilities are free to conduct their gardening activities. as explained by some participants, the physical environment within the project prohibited the movement of persons living with disabilities in either their workplaces or in societies in which they live. the challenge of access is echoed by abdullahi and ahmed (2017:54) who argue that persons with disabilities cannot easily move around within their environments because of the inaccessible nature of buildings, pavements, roads and transport systems. this is further corroborated by rohwerder (2018) who confirms these findings when he explains that environmental obstructions limit the productiveness of persons with physical disabilities’ access to production processes. this, therefore, limits their full participation in economic activities. the participants complained that even though they had some innovative ideas on how best to design disability-friendly garden beds, their voices were not heard because they were not represented in the management. all these facts show that the persons with disabilities were not actually empowered. being reduced to serve as employees, they had no autonomy at all. because some of the key features of meaningful community development are autonomy and empowerment, this project falls short of being developmental. according to bryant and chahine (2016:169), the purpose of community gardens is derailed because of the lack of participatory action amongst the members. this creates a sense of mistrust which can disrupt the whole project. reynolds and cohen (2016:91) share the same sentiments in that lack of equal voices in these projects diminishes decision making and efforts directed towards change. in essence, participation amongst members is key because collective action brings better ideas which will lead to successful and sustainable community gardens. conclusion and recommendations the study has demonstrated the important role which community gardens can play in improving the livelihoods and welfare of people living with disabilities. having taken the initiative to start a community gardening project, these people were able to generate incomes and improve access to food and nutrition. the gardens created jobs and also had other positive effects such as enhancing their dignity and self-worth. however, a major challenge relates to the lack of sustainability largely because of the dependence of the group on those who are able-bodied. because of their own limited education levels and management experience, they co-opted able-bodied persons to take responsibility of the administration and management of the projects. however, the dynamics of unequal power relations between able-bodied and persons living with disabilities, amongst other factors, led to the exclusion of the latter from vital decision-making on payment of wages and also from disclosure of information on profitability of the projects. thus, although persons with disabilities own the land on which the project is operating, they are actually disempowered. furthermore, they feel that the exclusion has limited their ability to share innovative ideas on how the gardens can become more disability-friendly with respect to access and technological innovations. we therefore recommend that government departments and other stakeholders who are working to facilitate the development and empowerment of persons living with disabilities should implement measures that integrate the concerns and interests of such people to ensure that they benefit from such projects in a more sustainable and equitable way. to resolve the accessibility challenge, it is recommended that a disability access audit be conducted for the purpose of informing the design and specifications to improve access to the garden environment. it is recommended that the management structure should be representative of the sector that it serves, that is persons with disabilities. this will promote the disability movement motto of ‘nothing for us without us’. to foster this approach, there is a need to commit to a rights-based approach to disabilities upon which inclusive development is seen as a right for persons with disabilities. it can therefore be concluded that the best way to promote disability inclusive community development is engaging with persons with disabilities as partners, expert advisors, active participants and beneficiaries. we recommend that the departments of agriculture and the department of social development as well as other stakeholders working with persons with disabilities should consider adopting more participatory approaches so that the intended beneficiaries of projects are fully engaged in the affairs of the project. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions b.t. and t.m. both contributed to the literature surveillance and drafting of the 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african perspective, ashgate publishing, ltd. farnham, uk. williams, m. & moser, t., 2019, ‘the art of coding and thematic exploration in qualitative research’, international management review 15(1), 45–55. wise, p., 2014, grow your own: the potential value and impacts of residential and community food gardening, australia institute, canberra. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) makwena m. sibuyi department of physiotherapy, faculty of health science, sefako makgatho health science, tshwane, south africa department of physiotherapy, faculty of health science, university of pretoria, tshwane, south africa desmond mathye department of physiotherapy, faculty of health science, university of pretoria, tshwane, south africa muziwakhe d. tshabalala department of physiotherapy, faculty of health science, sefako makgatho health science, tshwane, south africa komane matthews mphahlele department of inclusive education, faculty of education, university of limpopo, polokwane, south africa nombeko mshunqane department of physiotherapy, faculty of health science, university of pretoria, tshwane, south africa department of physiotherapy, faculty of health science, university of kwazulu-natal, durban, south africa citation sibuyi, m.m., mathye, d., tshabalala, m.d., mphahlele, k.m. & mshunqane, n., 2025, ‘parental perspectives on support for learners with physical disabilities at special schools’, african journal of disability 14(0), a1640. https://doi.org/10.4102/ajod.v14i0.1640 original research parental perspectives on support for learners with physical disabilities at special schools makwena m. sibuyi, desmond mathye, muziwakhe d. tshabalala, komane matthews mphahlele, nombeko mshunqane received: 10 dec. 2024; accepted: 14 july 2025; published: 13 aug. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: inclusive education for learners with special education needs is challenged with a rigid curricula and inadequate policy monitoring. parental perspectives are crucial for shaping inclusive policies. however, these are insufficiently examined in the existing research and hinder improvements in special education practices. objectives: this study explored parents’ perspectives on how special schools met the unique needs of learners living with physical disabilities. method: a descriptive, qualitative exploratory design utilising semi-structured interviews with 11 parents from three selected special schools was adopted. participants were recruited using a purposive non-random sampling method through telephone calls and face-to-face interviews. transcripts were audio recorded and transcribed verbatim. data were analysed inductively using a six-step approach to thematic data analysis on atlas.ti version 9. intercoder reliability was achieved with consensus agreement. results: three themes emerged: (1) a lack of curriculum differentiation and its effects on the learners’ academic performance. (2) a lack of empathy and support in addressing the learners’ challenges. (3) poor management of assistive devices. conclusion: parents perceived that special schools inadequately addressed their children’s needs, particularly in curriculum delivery. insufficient assessments resulted in learners remaining in unsuitable academic stream instead of transitioning to vocational pathways. contribution: parental insights highlight critical areas for improvement in informing policies to enhance support for learners with special education needs. keywords: special schools; parents’ perspectives; learners with physical disabilities; curriculum differentiation; vocational education. introduction sustainable development goal 4 pronounces a global commitment to ensuring inclusive, equitable and quality education for all, with an emphasis on promoting lifelong learning opportunities (united nations 2015). at its core lies a moral imperative that every child has the fundamental right to an education of high-quality that is responsive to their individual needs. the united nations educational, scientific and cultural organization (unesco) global education monitoring report (2020) advocates for empathy-driven leadership and education systems that value diversity as key drivers of inclusion. cultivating inclusive classrooms that recognise, and respect diverse learner experiences is foundational to building environments where all learners feel supported. however, persistent challenges prevent the realisation of equitable education. these challenges include (but not limited to) inadequate support and training for educators and infrastructural inadequacies that fail to accommodate diverse learning needs (unesco 2020). the three stream model of education the south african department of basic education (dbe) adopted the three stream model of education as a strategy to provide learners with greater choice and flexibility, catering to their interests and abilities, while responding to learner attrition, low matriculation pass rates, and rising youth unemployment (dbe 2023). the three streams refer to the academic, technical-vocational and occupational stream found within the national curriculum statement for grades r-12. the academic stream is the traditional route focusing on theoretical knowledge, which prepares students for higher education. the technical-vocational stream emphasises practical skills and provides opportunities for students to acquire technical knowledge. the occupational stream targets skills-based learning and is designed to prepare students for direct entry into the workforce or entrepreneurship, especially for those who might struggle in the traditional academic route (equal education 2018). for these learners a differentiated curriculum and assessment policy statement (dcaps) curriculum is provided for in the foundation and intermediate phases (dbe 2021). differentiated curriculum and teaching strategies the dcaps curriculum stands out from south africa’s standard curriculum and assessment policy statement (caps) curriculum by placing stronger emphasis on practical skills. in indonesia, the curriculum gives slightly more weight (60%) to vocational training than academic subjects, prioritising hands-on learning for students (wijaya & huda 2018). by comparison, south africa places even greater focus (80%) on developing learners’ practical abilities over theoretical instruction (shaffeei, razalli & hanif 2020; zhang 2009). despite differences in balance, both systems aim to support students who struggle with traditional academics through subjects such as woodwork and welding. vocational options are selected based on the school’s resources and the specific needs of learners to help them gain relevant workplace experience (dbe 2018; ratnengsih 2017). to support this, educators must understand each learner’s strengths and challenges and use varied teaching methods to encourage active participation in the classroom (reis & renzulli 2018). building rapport with students and collaborating with support staff are also essential to successful implementation (tjernberg & mattson 2014). in indonesia, having trained vocational educators and integrating these subjects into the timetable has helped students gain work experience through partnerships with non-governmental organisations (ngos) and businesses (pasaribu & harfiani 2021). in contrast, south african schools often face obstacles such as unskilled teachers, lack of curriculum specialists and inadequate infrastructure, making it difficult to offer a differentiated and responsive curriculum (du plessis 2020; maniram 2015). these challenges highlight the need for well-designed support systems and professional development (solomon, luger & ned 2024). ultimately, the success of the dcaps curriculum depends on educators’ ability to adapt academic content and deliver practical skills training that meets diverse learner needs (akrim & harfiani 2019; reis & renzulli 2018). support envisaged at special schools for learners with special needs special schools play a key role in helping learners with special needs, especially when mainstream schools cannot offer the support they require. the national policy on screening, identification, assessment and support (sias) and the national policy on the programme of progression and promotion requirements (npppr 2017) guide schools on how to identify learning challenges, decide what kind of support learners need, and make sure they progress fairly through the education system. the use of sias policy helps in identifying learners who are facing learning barriers and ensures they get personalised support (dbe 2014). this support often comes from a team of professionals, such as therapists (physiotherapists, speech therapists and occupational therapists) and psychologists, who assess learners and help create customised learning plans. these plans are carried out in collaboration with teachers, parents and support staff to promote holistic development (hayes & bulat 2017). support systems such as school-based support teams (sbsts) and district-based support teams (dbsts) help turn policy objectives into practice. school-based support teams work directly within schools to assess needs, coordinate help, and work with families and specialists. district-based support teams support schools more broadly, offering training and helping with policy implementation. special schools also act as resource hubs, providing specialised lessons, therapies, assistive devices and training for teachers in both special and mainstream schools (dbe 2014). according to the npppr policy, schools must give students with disabilities appropriate assessments and accommodations so they can advance through school and receive formal qualifications (dbe 2017). however, chataa and nkengbeza (2019) pointed out challenges in promoting learners without fully preparing them. disruptive behaviour and low expectations can lead learners to feel hopeless and stop putting in the effort toward their schoolwork (lawrence-turner 2011; lynch 2014). as learners are promoted without fully grasping the content, staff shortages worsen, leaving teachers overwhelmed and affecting the quality of education (muziransa 2016). these policies highlight that all learners should be given the right support and resources to access education meaningfully and successfully. assistive devices learners with physical disabilities often require the use of assistive devices for support, mobility and prevention of musculoskeletal issues such as poor posture and pain (edusei & mji 2019; schewtschik et al. 2013). assistive devices play a crucial role in enhancing access and enabling active participation for individuals within their communities, including educational settings (adugna et al. 2020). however, fewer than one in five individuals in low-income settings have access to the assistive technology they need (harniss, samant raja & matter 2015; visagie et al. 2017). most learners in special schools lack sufficient access to appropriate assistive device because of challenges pertaining to centralised procurement, inadequately trained personnel and a lack of funding for maintenance and replacement (trafford et al. 2021). it is the view of solomon et al. (2024) that there is a lack of mandatory enforcement in policy implementation because of the provision that implementation only depends on availability of resources. the role of parents global and national education policies highlight the vital role of parents in partnering with educators to create learning spaces that nurture students’ academic achievement, social development and emotional well-being (barger et al. 2019; guo & keles 2024; wong et al. 2018). yet, most studies on parent involvement tend to focus on educators’ views, with very few giving voice to parents directly. in limited research carried out in europe, parents generally felt that teachers understood their children’s strengths and offered appropriate support (paseka & schwab 2020). other studies show that parents believe successful inclusive education depends on skilled teachers, meaningful parent participation and a caring attitude (hanssen & erina 2022). because parents are not usually included in policy discussions and decisions, many inclusive education policies fall short of meeting family needs. without listening to parents’ experiences and ideas, education systems cannot become truly inclusive or responsive. this study helps close that gap by focusing on parents’ views of how special schools support children with physical disabilities. hearing from parents provides valuable insight into how schools deliver education and support services, enabling educators and policymakers to strengthen collaboration and create more inclusive, family-oriented learning environments (guo & keles 2024; kurth et al. 2019). understanding these perspectives is essential for turning policy into real, effective support for learners and their families. research methods and design the study adopted a qualitative approach rooted in the interpretivist perspective. this approach emphasises understanding individuals’ viewpoints, based on the assumption that reality is subjective, multifaceted, and shaped by each person’s unique historical and social context (kumatongo & muzata 2021). according to this perspective, reality is shaped by personal experience and varies from person to person. study design the study undertook an explorative and descriptive, qualitative design using semi-structured interviews (abu-halaweh et al. 2021). this approach focuses on representing the views of the participants without considering extensive theoretical interpretation or providing theoretical explanations to the phenomena. this is most suitable, especially in the area where research is limited. for the context of this study, the views of parents regarding support provision at special schools have not been explored sufficiently. thus, this study design was chosen as it is suitable to strengthen the voices of parents, describe their experiences and share insight towards their views. setting the study involved parents of learners living with physical disabilities attending special schools in limpopo province, south africa. the rate of individuals with disabilities in the province is estimated at 7 out of every 100 people, with one-quarter of the children experiencing disabilities (stats sa 2024). typical of rural provinces, limpopo province is among the resource-constrained provinces in south africa with regard to infrastructure, staff and learning materials. in addition, schools lack adequate support to advance inclusive education from their support structures (maapola-thobejane, ehiane & prudence 2023). the province only has 35 special schools accommodating learners with various special education needs amid the growing population of children with disabilities. these special schools are widely dispersed geographically among the ten education districts. to simplify data collection, only three nearby special schools were selected because of their proximity to the researcher. recruitment the researcher communicated with school principals and chairpersons of school governing bodies of selected special schools by email, indicating the purpose of the research involving parents of all grade 7 learners. the researcher was invited to staff meetings to discuss and clarify how parents will be involved and the questions that will be asked in the interview guide. permission to contact parents was then requested. letters were prepared (with the researcher’s details included) to inform parents of the research project and to invite them to participate. these letters were issued to parents who visited the schools. to reach more parents, the researcher received authorisation from the school leadership to have contact details retrieved from the south african school administration and management system (sasams) by the designated personnel. this approach aligned with the protection of personal information act (popia), act no. 4 of (rsa 2013) section 18(4). the researcher phoned parents individually. most of the cellphone numbers were not working; for some, the lines did not exist. in school a, seven parents were reachable out of the 15. in school b, two out of seven, and in school c, two out of 11 were reachable. the recruitment process took place over 4 months from 19 august 2021 to 14 november 2021. table 1 shows the demographic characteristics of 11 participants. of the 11, only one participant was a father and one a grandmother. the majority were single mothers and unemployed (n = 6). the median age was 43 years. table 1: demographic characteristics of parents (n = 11). study population and sampling strategy a total of 11 parents who were contacted from the three special schools were interviewed. the purposive non-random sampling method was used to recruit participants through telephone calls. this sampling method enables researchers to select with intention participants who have specific characteristics and experiences that align with the goal of the study (campbell et al. 2020). inclusion criteria only parents who were reachable via telephone and confirmed to have a child in grade 7 living with a physical disability from the three selected special schools participated in the study. parents referred to either a primary or secondary caregiver, regardless of gender, if the individual was registered by the school as the one responsible for the child. data collection data were collected using semi-structured interviews conducted both physically and telephonically. the telephone medium was preferred to reach parents who were widely dispersed and would have involved a high cost for travelling (ilies et al. 2007). the researcher prepared a spreadsheet to indicate cellphone numbers that were not working, whether consent was given or not, language preference of the parent, the date and time of the appointment to conduct the interview. in cases where parents spoke a language that the researcher was limited to understand, such as tshivenda, the services of a translator were employed. the researcher informed the translator about the study and coached her on how to probe questions. it is crucial to highlight that the translator was a registered health practitioner and therefore bound by professional ethical standards to maintain confidentiality. while a formal non-disclosure agreement was not signed at the time of the study, the translator was verbally briefed on the importance of protecting the participants’ privacy. interviews occurred via conference calls only when the translator was available. the researcher sent messages to remind parents about the interview appointment closer to the date and advised them to be in a quiet area. parents were also informed of the presence of a translator before the interviews. the researcher took notes while the interviews were in progress and audio recorded with the participant’s permission. on average, telephonic interviews lasted 40 min and 50 min for physical (irvine 2011). transcripts in tshivenda were translated to english and transcribed verbatim (hill et al. 2022). the authors acknowledge the risk of some cultural nuances being lost or altered during transcription; however, this was mitigated by employing a translator proficient in tshivenda. transcripts captured not only spoken words but also non-verbal cues such as body language and tone of voice (denham & onwuegbuzie 2013). each transcript was allocated a unique identity number for the sake of confidentiality (kaiser 2009). transcripts were sent to parents to verify their statements through whatsapp and email (hill et al. 2022). data analysis inductive thematic data analysis on atlas.ti version 9 was conducted following the six-step approach (braun & clarke 2006) to obtain the perceptions of parents concerning their views on how special schools addressed and responded to the unique needs of their children. this approach was most suitable as the study aimed to explore parents’ perceptions, with the aim of making their voices heard. in addition, this approach facilitates themes to emerge directly from the data rather than from pre-existing frameworks. the six steps began with researchers familiarising themselves with the data through repeated readings and note-taking. initial codes were generated from quotations, which were then grouped into categories and refined into themes following consensus. finally, the three themes formed the basis of the study’s results and discussion. eleven transcripts were uploaded on atlas.ti version 9 and analysed retrospectively (guest, bunce & johnson 2006). two researchers coded the transcripts individually, and the other became a referee during discussions of themes (hennink, kaiser & weber 2019). data saturation was reached on the coding of the 7th interview, and no new codes emerged from the data. consequently, thematic analysis was halted. similar codes were grouped into categories, which then produced overarching themes. a consensus agreement was used as a strategy to determine intercoder reliability (prieto-gonzález et al. 2021). this strategy allowed back-and-forth and in-depth discussions of themes among the authors (makwena m sibuyi; muziwakhe tshabalala) yielding credible results. trustworthiness trustworthiness was achieved in various ways to ensure rigour relating to credibility, transferability, dependability and confirmability (johnson, adkins & chauvin 2020). credibility refers to confidence in the truth of the study, and it was established through member checks of 11 participants. transferability refers to the extent to which the findings can be applied or are relevant to other contexts or groups. this was ensured by providing detailed contextual information about the study setting, interview method and duration. dependability refers to the consistency and stability of the findings over time and across researchers. this was established through maintaining an audit trail recording study activities for future replication. confirmability refers to the extent to which the findings of the study are shaped by the participants and not by the researcher. confirmability was maintained through collaboration with a co-coder (mm; mt), fostering consensus when coding discrepancies emerged (nowell et al. 2017). the researcher worked with a co-coder to maintain consistency in coding. ethical considerations approval to conduct the study was granted by both the university’s health sciences ethics committee (ref:668/2020) and the provincial department of education. the research adhered to the ethical principles of conducting studies involving human participants, following the guidelines set out in the helsinki declaration version 13 (general assembly of the world medical association 2014). all participants signed informed consent forms, thus agreeing to participate in the study and to have their voices recorded for the interviews. results three overarching themes emerged with inductive thematic data analysis: (1) lack of curriculum differentiation and its effects on the learners’ academic performance, (2) lack of empathy and support in addressing the learners’ challenges, and (3) poor management of assistive devices. theme 1: lack of curriculum differentiation and its effects on the learners’ academic performance parents were of the view that the curriculum was not adapted as it should be to accommodate their children with special educational needs. as a result, because their children were not benefiting from the curriculum, the level of their academic performance was less desirable. this is supported by the following quotations: ‘it seems they teach them the way they do at normal mainstream school from the way i see it. eish to be honest i am not satisfied with how they teach them. if i’m not mistaken there is no class that my child does not fail. that is why my child is still in grade 7 at 18 years. ah last year i started giving up thinking that the child must leave school and stay home with me because i got angry when i saw her reports … it’s like i am wasting time. she gets one report and every time they progress her to be condoned. they should try skills to see if the child can do it. when the child is like this, they want her to write. the child cannot write, even if the child writes eish.’ (p6, female, 35, married, unemployed, mother) ‘it seems they don’t have skills projects. we don’t know when to be sure because there are those who don’t need to be taught in class but can-do vocational skills. i think if they had skills, my child would have been in that class.’ (p5, male, 52, married, educator, father) parents realised that their children were repeating grades until being progressed to the next grade without meeting the academic promotion requirements and not receiving the necessary support needed. parents were not satisfied with this practice of their children just being progressed to the next grades because they were worried that there was no learning taking place. this is supported by the following quotations: ‘so, if he has 2 years in the same grade then they progress him. i realised that there is no progress.’ (p5, male, 52, married, educator, father) ‘the problem is that he repeated grade 5 a lot of times. but it’s the same with where he is now. he repeated grade 5 twice; he was just being progressed. he does not understand anything. that is why i want him to do skills.’ (p2, female, 53, single, unemployed, mother) ‘previously she failed and had to repeat. she is progressing and i am not happy. because at the end of the day a progressed child becomes redundant and knows nothing. it means they will keep on progressing her until grade 12.’ (p8, female, 45, married, admin clerk, mother) theme 2: lack of empathy and support in addressing the learners’ challenges there was tension between parents and educators as it seemed that educators shifted the responsibility of identifying learning barriers and providing appropriate support onto the parents, while parents expected teachers to possess the skills of recognising barriers and supporting their children accordingly. educators embraced the learners’ weaknesses more than their strengths and failed to address the learners’ challenges. this is supported by the following quotations: ‘they are complaining that the child is not doing schoolwork. yes, the teachers are complaining … the child does not want to write. so, they were asking that i should speak to her. this is the third year the teachers have complained. so, i really don’t know if they can’t handle her at school how will i handle her better. i think they should be advising me on what to do but they don’t. because even if i try to talk to her, she will still be spending a lot of time at school. i see her only during holidays.’ (p6, female, 35, married, unemployed, mother) ‘so, i’m not even sure what is the main challenge. i also ask how i can assist or support however i can. but some of the teachers complain about her sleeping in class. this one they complain about it … eish [hopeless] i think even if she is sleeping in class, they should wake her up. so that she can catch up. so, if they leave her sleeping it’s obvious, she is not learning in class.’ (p8, female, 45, married, admin clerk, mother) theme 3: poor management of assistive devices parents complained about the bad condition of their children’s wheelchairs, which posed a risk to their safety. this is supported by the following quotations: ‘that’s another issue with wheelchairs at that school. she started there in 2012, but she has had so many wheelchairs since then. she recently received a wheelchair in january, but you won’t like it when you see it but it’s already broken, and the year has not ended. imagine since 2012 the child used about four wheelchairs. i don’t know if they are careless or what. when i ask, she does not respond so i asked if other children were using her wheelchairs. she says they play with them. eish … i am stressed to be honest because to get a wheelchair in hospitals it’s tough. it’s not simple. i cannot stand seeing her in that wheelchair. i rather save money and buy.’ (p6, female, 35, married, unemployed, mother) ‘we have since applied for a wheelchair at the hospital. we still have not received it. the hand-rests are worn out and they are hurting her. i don’t know what will happen next year at the new school the whole year if we don’t get it.’ (p3, female, 42, single, unemployed, mother) the other parent was concerned about her child not putting on callipers while at school because there was no one to monitor compliance in wearing this type of assistive devices. this is supported by the following quotations: ‘you will be doing certain exercises with the child but when she gets to school, she no longer does it because there is no one to monitor. you will just find her walking without callipers because she has no one to assist to put them on.’ (p8, female, 45, married, admin clerk, mother) discussion demographic characteristics of participants the demographic data from this study indicated that many primary caregivers for learners with disabilities were unmarried, unemployed mothers (n = 6). the caregiving responsibilities in this context referred to staying home and looking after the needs of the child with disabilities beyond providing an income. these findings are consistent with those of dhada and blackbears (2019), who also observed that, in most cases, mothers primarily take on the caregiving responsibilities for children with disabilities (table 1). the gender disparities in caregiving roles are attributed to societal and cultural perceptions that recognise mothers as more fitting to address the complex emotional and physical needs of children with disabilities (dempsey & keen 2008). the caregiving responsibilities that single mothers assume often make securing employment challenging, thereby exacerbating the family’s financial difficulties and contributing to their poverty status (nicoriciu & elliot 2023; rupp & ressler 2009). notably, it is rare to have a father assuming the role of a primary caregiver, which is traditionally associated with mothers in many cultural contexts, especially grandmothers. these demographics reflect a changing pattern in parental roles within families managing the responsibilities of caring for a child living with disabilities. theme 1: lack of curriculum differentiation and its effects on the learners’ academic performance delivery of an inclusive curriculum necessitates differentiation, which, in turn, requires educators to possess knowledge of diverse teaching strategies and the capacity to apply these effectively in response to the learners’ needs. key indicators of effective differentiation include the use of alternative instructional approaches and strategies to stimulate learner engagement (tjernberg & mattson 2014). according to the views of parents in this study, the curriculum was not sufficiently differentiated to accommodate their children’s individual learning requirements. this finding highlights the challenges associated with implementing a curriculum that is flexible and capable of addressing the diverse needs of learners. onyishi and sefotho (2020) attributed this challenge to the lack of curriculum specialists whose responsibility would be to capacitate educators on curriculum-related strategies. this responsibility seems to be expected to be carried over by the sbsts to mitigate for the knowledge gaps among educators. however, the sbsts are limited in their functions and responsibilities to support educators and learners because of a lack of training in assuming their roles (makhalemele & tlale 2020; subramoney 2017). in comparison to the south african context, a study conducted in germany examining parental attitudes and perceptions towards inclusive education and teaching practices found that parents generally reported a strong implementation of innovative teaching methods. these methods were seen as enhancing learner engagement and even benefited learners with learning difficulties (paseka & schwab 2020). the lack of effective curriculum differentiation can be linked to the high number of learners failing and progressing to the next grade without support systems being in place. the views of parents in this study concurs with those of parents of children with intellectual disabilities in lesotho who participated in semi-structured interviews regarding the provision of inclusive education. in the above-mentioned study, parents reported that their children acquired neither academic nor social competencies and resulting in learners dropping out of school (tseeke 2024). parents in this study preferred their children to do vocational skills because they realised they were struggling with the mainstream education. however, special schools did not cater for the needs of these affected learners. a study by basister and valenzuela (2021) in the philippines revealed that learners with special educational needs receiving vocational education often acquired skills that enabled them to contribute economically and achieve financial independence. however, in the south african context, the implementation of vocational education faces significant challenges, as reported through semi-structured interviews with teachers involved in vocational education programmes for learners with special needs in cape town. these challenges included but were not limited to inadequate training for educators, insufficient infrastructure, and limited access to resources necessary for practical skill development (solomon et al. 2024). this finding suggests that without vocational education, learners risk losing the opportunity to achieve financial independence. consequently, this increases their reliance on parental support and government resources, as they are unprepared for employment to sustain themselves. although there is limited research in the south african context on parents’ views regarding curriculum differentiation, evidence from international studies highlights the need to invest in educator training and the development of school-based support systems to enable inclusive and differentiated teaching practices. south africa’s schools have inclusive education policies in place, but they lack the necessary resources to effectively implement vocational training and curriculum differentiation. this gap perpetuates the disparity between the goals of the policies and the actual experiences in the classroom. theme 2: lack of empathy and support in addressing learners’ challenges the theme showed a lack of empathy on the side of educators when engaging the learners and parents. parents perceived educators to be complaining about the challenges their children experience in the classroom instead of collaborating with parents to work out solutions. parents became hopeless and frustrated, unsure of where to go for support. tjernberg and mattson (2014) advocate for personalised instruction to identify areas where the learner needs to be supported. parents in russia who participated in a study that explored their views on inclusive education for their children with special educational needs viewed humanity as one of the crucial aspects necessary for implementing inclusive education (hanssen & erina 2022). humanity involves understanding the world from the child’s perspective to acknowledge their struggles, strengths and delivery of support in a caring, non-judgemental way (unesco 2020). parents in germany (in the study mentioned in theme 1) attested to the need for instruction that is personalised and accompanied by empathy in inclusive classrooms. these parents reported that educators built strong connections with learners and prioritised the learners’ interests (paseka & schwab 2020). unlike in this study, parents are disappointed that children are not engaged optimally in the classroom. the educators could be portraying this negative attitude towards parents and learners because they do not feel supported by their institutions in performing their duties. as a result, teachers may unintentionally express frustration or disengagement, which parents interpret as a lack of empathy and commitment. this study concurs with watermeyer, mckenzie, and kelly (2024) that emotional and structural challenges hinder teachers from effectively implementing inclusive education. thus, the negative perceptions held by parents are frequently symptoms of deeper systemic issues, where educators’ emotional well-being and access to professional support are not given sufficient priority. to enhance learner engagement and build stronger relationships with parents, schools must invest in comprehensive support systems that equip teachers with the emotional resilience and professional confidence needed to adopt inclusive practices. theme 3: poor management of assistive devices parents reported that their children’s assistive devices were often worn out and difficult to replace. one of the main challenges was the long wait list at public institutions, particularly for wheelchairs. furthermore, as many of the children stay in hostels during the school term, families often have to wait until the end of the term to replace items such as crutches at their nearest referral hospital. many schools struggle to maintain and replace assistive devices because of constraints in budgets and the centralisation of procurement processes. this approach leads to allocations of assistive devices being made once-off and excluding additional costs associated with the maintenance and replacement of wheelchairs and crutches for example (world bank 2023). the views of parents in this study concur with a study involving parents of learners with physical disabilities in iceland investigating the use, impact of mobility devices on activities and participation and satisfaction with the service delivery process of mobility devices (gudjonsdottir & gudmundsdottir 2023). parents in the study reported dissatisfaction with the lack of follow-up and maintenance of the devices their children use at special schools. the lack of proper follow-up for assistive devices in schools can result in delays in necessary adjustments or replacements. the school’s environmental conditions significantly contribute to the rapid wear and tear of these devices. for example, uneven playground surfaces, learners using the same devices for play and sports, and friends improperly propelling learners in wheelchairs along lengthy corridors connecting classrooms and hostels all exacerbate device deterioration (gudjonsdottir & gudmundsdottir 2023). these factors highlight the need for regular maintenance checks, user training and tailored environmental modifications to ensure the durability and safe use of assistive devices for learners. limitations the findings of this study are limited to parents whom the researcher was able to reach by telephone. the views expressed by parents are inherently subjective, shaped by their deep concern for their children’s well-being and prospects. as a result, it is important to observe that these views should not be generalised to all parents. in addition, the study lacked gender diversity as only one male father participated. thus, the voices and views of fathers were underrepresented. because of limited time and resources, the study did not include parents of learners from other special schools in the province. although the interview guide was not piloted, it was shared with participants in advance, allowing them to engage with the questions, seek clarification, and prepare their responses. the study employed the services of a translator, which could have caused some information to be misinterpreted. conclusion this study provides important insights into parents’ views on how special schools addressed the unique needs of learners with physical disabilities. parents identified significant gaps in the use of varied teaching methods. a key issue was the limited ability of educators to adapt the curriculum effectively to meet the diverse needs of learners. this limitation highlights an urgent need for professional development to equip teachers with the skills to personalise learning to improve both academic and social outcomes for learners with special educational needs. the findings also revealed that educators often focused predominantly on learners’ challenges and limitations rather than recognising and responding to their individual strengths and interests. this approach can hinder learner motivation and participation. cultivating empathy among educators is crucial in encouraging them to understand and appreciate each learner’s unique experiences and capabilities, which fosters a more inclusive and engaging learning environment. furthermore, the study uncovered systemic barriers that restricted the full implementation of inclusive education in special schools. there was a notable lack of effective management of assistive devices, which are essential for supporting learners with physical disabilities. in addition, the shortage of appropriate materials and inadequate infrastructure severely limited opportunities for vocational skills training, an important pathway to independence and future employment. despite the inclusive education policy’s goals, learners were frequently excluded from meaningful learning experiences because of these institutional and policy-level challenges. addressing these issues would require comprehensive strategies that enhance educators’ capacity, improve resource availability, and strengthen infrastructure and assistive technology management. only through such coordinated efforts can special schools truly provide equitable, inclusive, and empowering education for all learners with special educational needs. recommendations based on the findings, the following recommendations can be helpful. curriculum specialists within the special schools’ district should provide educators with professional development on how to modify the curriculum to meet the diverse needs of learners with special education needs. this includes adapting lessons to accommodate different learning styles and providing more individualised support to learners. the school principals alongside the school based support teams (sbts) should strengthen programmes where parents would be encouraged to be involved in all decision-making processes pertaining to their children. these programmes will ensure that their concerns are heard and that their input is incorporated into school policies to promote inclusive education. the provincial department of education should ensure that special schools, particularly as resource centres, are adequately funded and equipped to provide the necessary support for learners with special educational needs. this includes providing resources for vocational education, accessible learning materials and staff training to support curriculum differentiation. the sbt, including therapists such as physiotherapists, speech therapists and occupational therapists, should collaborate in implementing the sias process for the early identification of learners’ interests and strengths. through comprehensive assessments, sbt can guide curriculum stream selection to better align learning experiences with each learner’s abilities. these assessments should provide evidence-based recommendations to ensure that learners who experience difficulties with the mainstream academic curriculum are not unnecessarily retained in their current grades. instead, they should be directed towards skill-based subjects that promote greater engagement and support their overall development. acknowledgements the authors would like to thank rabelani nephiphidi for her translation services during the interviews. a preprint version of this work was previously published on preprint.org (https://www.preprints.org/manuscript/202412.0788/v1), and we acknowledge its role in shaping the final manuscript. competing interests the author reported that they received funding from the limpopo etdp seta and the south african medical research council (samrc), which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions m.m.s. was responsible for drafting the whole manuscript. m.d.t. and n.m. reviewed and edited the data collection and analysis. k.m.m. reviewed and edited the results and discussions. d.m. proofread and provided editorial input for the entire manuscript. funding information the limpopo etdp seta and the south african medical research council (samrc) funded the study. data availability the data that support the findings of this study are openly 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blumenthal sarah m. anjos shaun viljoen shona mcdonald sophie mitra stephanie nixon susan schweik tanya theunissen tone oderud we appreciate the time taken to perform your review successfully. in an effort to facilitate the selection of appropriate peer reviewers for the african journal of disability, we ask that you take a moment to update your electronic portfolio on http://www.ajod.org for our files, allowing us better access to your areas of interest and expertise, in order to match reviewers with submitted manuscripts. if you would like to become a reviewer, please visit the journal website and register as a reviewer. to access your details on the website, you will need to follow these steps: 1. log into the online journal at http://www. ajod.org 2. in your ‘user home’ [http://www.ajod.org/ index.php/ajod/user] select ‘edit my profile’ under the heading ‘my account’ and insert all relevant details, bio statement and reviewing interest. 3. it is good practice as a reviewer to update your personal details regularly to ensure contact with you throughout your professional term as reviewer to the african journal of disability. please do not hesitate to contact us if you require assistance in performing this task. publisher: publishing@aosis.co.za tel: +27 21 975 2602 fax: +27 21 975 4635 african journal of disability abstract introduction methods results discussion conclusion acknowledgements references about the author(s) aschalew t. kebede centre of excellence in disabilities, faculty of education, university of south africa, pretoria, south africa tlakale n. phasha centre of excellence in disabilities, faculty of education, university of south africa, pretoria, south africa citation kebede, a.t. & phasha, t.n., 2024, ‘developing teachers’ competency for inclusive education in ethiopia’, african journal of disability 13(0), a1383. https://doi.org/10.4102/ajod.v13i0.1383 original research developing teachers’ competency for inclusive education in ethiopia aschalew t. kebede, tlakale n. phasha received: 24 nov. 2023; accepted: 22 may 2024; published: 20 dec. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in light of the increasing diversity within school populations globally, a pressing need arises for nations to prioritise the enhancement of teachers’ competencies in implementing inclusive education, recognising the central role teacher education programmes play in addressing this imperative. teacher education programmes centred on inclusion not only respond to this global priority but also wield influence on teachers’ attitudes, self-efficacy and stress levels when engaging with diverse learners. objectives: the study presents an analysis of the effectiveness of a teacher education programme in ethiopia in developing teachers’ competencies for inclusion. method: using a sequential explanatory mixed-methods research design, involving 159 teachers, data were collected through questionnaires (n = 152) and individual interviews (n = 7). quantitative data were analysed using spss, and qualitative data underwent thematic analysis. this approach ensures a nuanced examination of the research question with precision and depth. results: findings highlight challenges in the ethiopian teacher education system, revealing a significant lack of provision of sufficient knowledge to empower teachers to understand inclusion. the inadequacy extends to the influence on teachers’ attitudes towards inclusion, as well as the insufficient exposure to practical, hands-on experiences essential for addressing diverse learning needs. conclusion: the challenges faced by teacher training in ethiopia, evident in its struggle to align with global standards for supporting teachers in implementing inclusive education, necessitate urgent and substantial reforms. contribution: addressing the gaps in understanding inclusion, fostering positive attitudes and enhancing practical experiences necessitating a comprehensive overhaul of teacher education curricula and practices. keywords: mixed method; inclusive pedagogy; teacher training; inclusion; inclusive education; competency; ethiopia. introduction with schools becoming increasingly diverse in terms of learner populations, it becomes imperative for countries to prioritise the development of teachers’ competencies in implementing inclusive education. in responding to this global priority, teacher education programmes are emerging as significant means to foster these essential skills. previous studies have indicated how a teacher education programme focussing on inclusion has a significant impact on teachers’ attitudes towards inclusive education, their self-efficacy and confidence, as well as reducing their stress levels in relation to dealing with diverse learners (cardona 2009; chamber & forlin 2010; coates 2012; issaka, nyaaba & iddrisu 2022; kim 2013; symeonidou & phtiaka 2014; world bank 2013). these programmes also contribute to teachers’ positive values and ethical understandings to ensure an inclusive environment in their classrooms (forlin 2012). such teacher training programmes facilitate the development of core competencies such as knowledge, practical skills and attitudes to successfully implement inclusive education. however, darling-hammond (2017) suggests that teacher education programmes that train teachers for inclusion need re-evaluation to ensure their efficacy in knowing, being, and doing, as there is limited evidence to judge their effectiveness in preparing teachers for the successful implementation of inclusive education in many countries, including ethiopia. the ethiopian government’s commitment to promoting inclusive education is evident in its educational policies, which have been informed by international declarations and conventions ratified since 1994. these policies focus on promoting the holistic development of children, including those with disabilities, orphans, homeless and working children, by protecting them from diseases and abuse and creating an optimal learning environment (emoe 2015). furthermore, the government implemented the education and training policy in 1994, which focusses on expanding general education for girls and women as well as students with disabilities (world bank 2013). however, the policy’s main goals, namely, access, equity, quality and relevance, have been overshadowed by a push to increase enrolment. to address this problem, the government has introduced teacher development programmes focussing on professional competencies and promoting inclusion in education (emoe 2012; world bank 2013). the programme is expected to develop teachers with the necessary knowledge, skills and beliefs necessary for their role as inclusive practitioners by the end of the training (emoe 2011). however, there are few studies that have investigated the views of teachers on whether the postgraduate diploma in teaching (pgdt) has supported them in developing competencies necessary for inclusion and becoming agents in ethiopia. this is critical as teacher education programmes are essential in building knowledge, attitudes and practical skills that facilitate the effective implementation of inclusion in education. in this context, the study’s aim is to investigate the influence of teacher training programmes on teachers’ knowledge, attitudes and practical skills in implementing inclusive pedagogy for learners with disabilities in ethiopia. by prioritising learners with disabilities, the article seeks to contribute to the creation of a more accessible and supportive educational environment that ensures that every learner has the opportunity to thrive. specifically, the study addressed the question: to what extent does teacher preparation contribute to the development of essential competencies required for inclusive education in ethiopia? the ethiopian government defines inclusion as a process that strengthens the capacity of the education system to reach all learners, guided by the principle that education is a fundamental right and the cornerstone of a just and equitable society (emoe 2017). inclusive education encompasses an education system that welcomes all learners, irrespective of poverty, gender, ethnicity, language, disabilities or impairments. this approach emphasises that all learners can learn, and it places particular emphasis on supporting groups of learners who are at risk of marginalisation, exclusion or academic underachievement (emoe 2017). therefore, the competency of teachers explored in this article is for the inclusion of all learners experiencing various barriers to learning in secondary school classrooms in ethiopia, including learners with disabilities. having said that, the section that follows will clarify the core competencies for inclusive education. core competencies necessary for inclusion in education although the definition of these competencies is influenced by national standards, various authors have identified practical skills, knowledge and beliefs as fundamental competencies for inclusive classrooms (fisher, frey & thousand 2003; hick et al. 2019; johnstone & chapman 2009; liakopoulou 2011). in the ‘knowledge-related competency’ section, we elaborate on each of these competencies. knowledge-related competency teachers’ knowledge about inclusion and barriers to learning, including those affecting students with disabilities, is important for the successful implementation of inclusive education. studies suggest four major areas of teacher knowledge for inclusion: content knowledge, pedagogical knowledge, knowledge of each student’s abilities and disabilities, learning strengths and needs, prior experiences, cultural and linguistic backgrounds, specialised knowledge of specific disabilities and contextual knowledge of inclusive education policies, procedures and legal requirements (bocala et al. 2010; kortjass 2012; le page et al. 2010; mu, wang & wang 2015; sanches-ferreira 2012). these areas help teachers carry out their work effectively and cater to divese needs (mu et al. 2015; sanches-ferreira 2012). in the same vein, bocala et al. (2010) propose a comprehensive knowledge package for general education teachers working in inclusive contexts, which includes an understanding of the legal and historical foundations of inclusive education, the growth and development of children with special educational needs, and instructional design, planning and methods. additionally, kortjass (2012) identifies seven categories of teacher knowledge for the effective implementation of inclusive education: content, pedagogy, curriculum, learners and learning, schooling contexts, pedagogical content knowledge and educational philosophies. however, some studies show teachers have a shallow understanding of inclusive education, highlighting the tension between desirable knowledge and reality (jenkins & ornelles 2009). as noted by lepage et al. (2010), teacher education programmes should expose candidates to the principles and philosophies of inclusive education, providing them with essential knowledge to develop a deep understanding of teaching and learning in inclusive settings. this knowledge includes content, professionalism, cross-cutting, emerging issues and practical understanding (tabot & osman 2017), as well as how to identify the needs and barriers to learning so that relevant pedagogic strategies can be applied. thus, it is crucial for teacher trainees to have knowledge of inclusive education to develop effective classroom activities and understand a child’s disability, thereby promoting personal and social adjustment. this knowledge is essential for teachers working in inclusive settings (opertti 2010). attitudes-related competency teachers’ attitudes towards inclusion and students with disabilities are crucial for creating inclusive schools and communities. they promote inclusive practices (forlin 2010), shape teachers’ perceptions of the social and physical world, and influence overt behaviours (albarracín et al. 2008). therefore, positive attitudes among teachers can create conducive learning environments and foster a sense of belonging (sepadi 2018). in this regard, ainscow, booth and dyson (2006) state that teaching is ineffective if teachers perceive themselves as lacking or fixed. loreman, sharma and forlin (2013) maintain that teacher education is a context where changes in attitude towards inclusion occur. similarly, rouse (2010) notes that interventions aimed at helping teachers understand and implement inclusion need to address not only knowledge and skills but also attitudes towards inclusion and children with diverse educational needs. therefore, affecting teachers’ attitudes is of great importance and is more beneficial during their teacher education programme (tubele 2010). pearson (2007) also emphasises the importance of inclusive education training, which should include activities that positively change teachers’ attitudes. on the other hand, isaaka, nyaaba and iddrisu (2022) showcase the effectiveness of a teacher training curriculum that explicitly outlines inclusive education as its foundational pillar. similarly, munyungu (2015) suggests that a gap between theory and practice is necessary for teachers to develop a positive attitude towards inclusivity. above all, teacher training should provide opportunities for trainees to interact with diverse learners, policies and legislation related to inclusive education. berisha and vula (2021) also suggest that attitudes can be changed through comprehensive, well-structured and hands-on courses. designing inclusive education training that benefits learners with diverse needs and the education system can help build an inclusive society (sepadi 2018). practical skills and abilities-related competency inclusive practices require teachers to develop key skills, including instructional and management abilities, to provide appropriate education for diverse student populations. mu et al. (2015) suggest adequate preparation in these areas. in this regard, idol (2006) identified three skill areas for the effective inclusion of students with disabilities: adaptation of instruction, curriculum modification, student discipline and classroom management. similarly, fisher et al. (2003) identified six essential skills for inclusive practices: collaborative teaming, curricular modifications, personal support, assistive technology, positive behavioural support and literacy instruction. bocala et al. (2010) also recommended these skills for general education teachers, including adapting instructional methods, acquiring field experiences, preparing individualised education programmes, seeking support and identifying learning needs (darling-hammond 2006). research indicates that teacher training is the best time for teachers to acquire the necessary skills for inclusion (ajuwon et al. 2012). teachers’ perception of preparedness is linked to the skills and abilities they acquire during training and their responsibilities as inclusive teachers (gorski 2012). acquiring practical skills during training helps teachers teach better, plan lessons and address individual needs, which are essential for managing an inclusive classroom (schunk 2008). similarly, mukhopadhyay, molosiwa, & moswela (2009) note that inclusive teachers are service providers in teaching students with diverse needs, and their skills contribute to their success or failure. inadequate training can lead to discontent among students, affecting their confidence and success. therefore, collaboration, student management, support and instructional accommodation are crucial practical skills for inclusive education teachers (liakopoulou 2011). new teachers often struggle with the complex demands of inclusive classrooms because of a lack of basic skills (sosu, mtika & colucci-gray 2010). in this regard, darling-hammond (2006) identified three fundamental skill-related problems: apprenticeship of observation, enactment and complexity. these problems require new teachers to understand teaching in different ways, act as teachers and respond to the dense and multifaceted nature of the classroom. to address these concerns, teacher preparation programmes should design courses that help prospective teachers appreciate environmental, social and cultural contexts of learning, behaviour, and teaching and practice these understandings in inclusive classrooms (eds. alur & timmons 2009). this being the case, however, investigating the extent to which university-based teacher education programmes are effective in equipping teachers with the necessary competencies so that they can practice inclusion successfully is important. teachers are expected to believe that they are qualified and capable of supporting all children in their teaching, boosting the capacity of all children to learn, and possess knowledge about socio-cultural perspectives on learning, as well as theoretical, policy and legislative issues of inclusion. in addition, they play a crucial role in creating favourable conditions for all children in an inclusive context. in this regard, the researcher adopted the framework developed by rouse (2010) about ‘knowing’, ‘believing’ and ‘doing’ concerning inclusion and by florian and spratt (2013) concerning the basic principles of inclusive pedagogical approaches that include understanding learning, social justice and becoming an active professional, so as to check the extent to which the teacher education programme conducted in ethiopia supports and equips teachers with the competencies necessary to implement inclusion in ethiopian educational system. the ‘methods’ section provides a detailed discussion of the methodology employed to conduct the present study. methods the research employed a mixed-methods approach, specifically adopting a sequential explanatory design as outlined by creswell (2012). the integration of qualitative and quantitative data within mixed methods research is considered advantageous, leveraging their complementary strengths to address pertinent research inquiries most effectively (grace 2014). the sequential explanatory design facilitated a two-phase data collection and analysis process, commencing with quantitative data in the initial phase and using its findings to inform the subsequent qualitative data collection and analysis phase. research location haramaya university, located in ethiopia’s eastern region, was chosen as a research site. as the oldest and largest public institution in ethiopia, it has better resources and a strong track record in teacher training (emoe 2018). the university has been offering the postgraduate diploma in teaching (pgdt) programme since 2011. sampling participants were selected from graduates who had attended the pgdt training at haramaya university. they were qualified for secondary school teaching and held teaching posts in 12 secondary schools surrounding the university. of a total of 173 participants who were invited to participate in the study, 152 indicated interest in participating. all 152 participants responded to the invitation, which was posted on the university’s notice boards, by contacting the first author directly through his mobile phone or email address. the study used two sampling techniques to obtain participants – simple random and purposive. the techniques permitted the acquisition of both quantitative and qualitative data, thereby optimising the study’s ability to address the research questions comprehensively. specifically, a simple random sampling approach was followed to obtain 152 (109 males and 49 females) teachers. this gender distribution revealed a notable imbalance, which may be attributed to historical gender equality in educational access in ethiopia (emoe 2015). regarding age distribution, the majority of graduates (83%) fell within the 20–25 age bracket, followed by those in the 25–30 age range (15%). a minimal percentage (2%) comprised individuals aged 30–35, with no graduates exceeding the age of 35 in the study. the skew towards a younger demographic is aligned with berger’s (2008) observation that the range of 20–30 is a critical period for educational pursuit and personal development. purposive sampling was followed to obtain participants to participate in the face-to-face, semi-structured interviews. they were seven in number – three females and four males. they had participated in the first phase of the study. their ages ranged from 22 to 27. the teachers possessed different undergraduate degrees before undertaking the pgdt. these included bachelor of sciences degrees in sports science, mathematics, biology, chemistry and physical sciences as well as bachelor of arts degrees in geography, environmental studies and english language teaching. data collection the study collected data through two phases. the first phase involved administering a questionnaire and the second phase involved conducting a semi-structured face-to-face interview. phase 1: a questionnaire a structured questionnaire developed from literature with a three-point likert scale was used to solicit relevant data. the questionnaire collected information covering: demographic variables; components or quality indicators of teachers’ preparedness for inclusion and competencies (knowledge, attitude and practical skills) to effectively implement inclusive education. a total of 173 questionnaires were administered to 152 (109 males and 43 females) respondents. the questionnaire facilitated the collection of large quantities of data over a relatively short period of time (tshuma & mafa 2013) and enabled the presentation of the data in numerical form that is comparatively straightforward to analyse (creswell 2012). phase 2: semi-structured interviews a semi-structured interview enabled the collection of detailed information in a conversational style (harrell & bradley 2009). furthermore, they afforded the flexibility to explore trends, unexpected results and significant findings that were raised during the first phase of data analysis (creswell & plano clark 2011). semi-structured interviews were conducted with seven teachers in a face-to-face manner at the place suggested by participants. to avoid disruptions to academic activities, the interviews were conducted in the afternoons. each interview was a one-time session and lasted about 50 min – 60 min. with the participants’ permission, the interviews were audio recorded. the following two questions were explored, followed by probing where appropriate: how has your university facilitated your preparation for inclusion? in what ways does the preparation contribute to the development of core competencies essential for inclusion? data analysis qualitative and quantitative data were analysed separately using two different methods. quantitative data were analysed statistically using spss version 6. subsequently, descriptive (frequency, percentage, mean and standard deviation) and inferential statistics (specifically multiple regression) were applied to derive meaningful insights. the analysis facilitated a nuanced exploration of the intricate interplay between various factors, contributing to a more comprehensive understanding of the phenomenon studied. the analysis of qualitative data was thematic, following braun and clarke’s (2006) framework. the process involved reading and reading transcripts to obtain familiarity with the data and jotting notes. we developed initial codes independently guided by the research questions, and we then came together to compare our ideas, discussed our codes and refined them. we then organised the codes into broader themes, to which we assigned a tentative name. the themes and names were refined following feedback from a critical reviewer. this method facilitated the extraction of meaning from a substantial volume of data, ensuring that the analysis remained focussed (creswell & plano clark 2011). the analysis of both quantitative and qualitative data was then synthesised to present a concise and accessible summary of major research findings presented in the ‘results’ section. ethical considerations the study was granted ethical clearance by the research ethics committee (rec) at the authors’ institution, the university of south africa (reference no.: 2022/06/08/55765998/06/am). permission to conduct the study was approved by the college of education at the university of south africa. this was followed by a thorough explanation of the study, research methods and research ethics, which included participants’ rights to participate voluntarily and to withdraw from the study at any time without negative consequences. anonymity and confidentiality were clarified as well as non-payment for participation. all participants gave written consent to participate in the study and to audio-record the interviews. results the extent to which teachers feel adequately prepared to develop the competencies required for inclusive teaching is presented in three headings: knowledge-related competency, attitude-related competency, and practical skills and abilities competency. the quantitative results obtained through the questionnaire are organised into tables; frequency and percentage are also computed. qualitative data are used to complement the quantitative findings of the study. the seven participants are coded using pseudonyms (ta, tb, tc, td, te, tf and tg) to guarantee their anonymity and confidentiality for the qualitative part. knowledge-related competency table 1 illustrates the positive outcomes from the training. specifically, 67.2% and 71.1% of the respondents reported that the training equipped them with knowledge of national and international policies, legal frameworks, as well as local institutional regulations that effectively promote and implement inclusion. additionally, 67.8% and 75.7% of the respondents agreed that the training helped them understand the principles and methods of teaching, along with the psychological and behavioural characteristics of diverse students. it also helped them in understanding how to assess learners with diverse needs, the practices related to inclusion and the associated issues, along with the theories that guide the implementation of inclusion (72.3%, 73% and 74.4%). furthermore, 68.4%, 71% and 73% of the respondents believed that the training equipped them with knowledge related to addressing diversity, fostering the belief that all children can learn with appropriate support and understanding the importance of collaboration with various stakeholders in the implementation of inclusion. table 1: knowledge-related competency developed as a result of the postgraduate diploma in teaching programme. notably, all the percentage scores in the study fell within the 60% to 79% range, which suggests that the pgdt programme has a moderately positive impact on enhancing teachers’ knowledge in accordance with bowen and power’s (2005) criteria. however, the responses of interviewees varied. for example: ‘i faced challenges to understanding and support a student with learning problem in my class, because i do not know the details of what learning disability is, and how such kind of students can be supported. even if “peda” training is good … there was not enough time to practice what we have learned.’ (participant 3, tc: 26 years, male and holder of bsc [mathematics] degree) ‘i feel that “peda” did not give me ample opportunity to understand the expectations and culture of the surrounding community; school settings and guidelines, and factors that may affect classroom instruction in this region.’ (participant 1, ta: 24 years, male and holder of bsc [sport science] degree) ‘the “peda” training i have taken didn’t helped me in developing my confidence and making me realise the wish to be involved in teaching of disabled students because of the very little knowledge i got from peda.’ (participant 5, te: 27 years old, male and holder of bsc [physics] degree) ‘i believe that every one of us has different capacity to learn; the problem is that i am not capable to properly support and cultivate the diverse ability and potential of my students. i feel that the “peda” training did not give me enough knowledge with different approaches to support my students.’ (participant 7, tg: 24 years, male and holder of bsc [chemistry] degree) ‘from “peda” training, i observed that even lecturers have knowledge gap on how to handle students with disability; they can’t be role models for us. i feel that more knowledge on handling students with disability would have been passed to us. (participant 2, tb: 23 years old, female and holder of bsc [biology] degree)’ in contrast, two of seven interviewees stated that they have gained sufficient knowledge about inclusive teaching and students with disabilities: ‘i have got adequate awareness and understanding on the educational and social problems and issues that can affect students’ learning in secondary schools; and i have developed teaching strategies that can i use to support and deal with such difficulties in an inclusive classroom from the “peda” training.’ (participant 4, td: 22 years, female and a holder of ba [geography and environmental studies] degree) ‘i have got a good grasp of most-up-to-date national policies and local regulations of inclusive education in ethiopia as well as i have adequate understanding about the psychological, physical, and educational needs of secondary school level students from the inclusive education course i have taken during the training.’ (participant 6, tf: 25 years old, female and holder of ba [english language] degree) qualitative data confirmed that the programme had a moderate level of effectiveness in providing teachers with knowledge on inclusive education, learners with special needs and disabilities, and relevant legal and policy frameworks, and strategies from national and international perspectives. attitude related competency table 2 illustrates that a significant proportion of respondents (65.8% and 67.1%) believe that learners with disabilities are entitled to receive quality education within inclusive settings. additionally, 67.8%, 76.3% and 76.3% of respondents expressed that inclusion provides social benefits for learners with disabilities. these findings underscore the importance of fostering positive attitudes towards learning environments that promote inclusivity and a sense of belonging for learners with disabilities. table 2: attitude-related competency developed as a result of the postgraduate diploma in teaching programme. teachers believe that inclusion enhances the learning of students with disabilities, promotes a heightened awareness of individual differences, encourages school reform and improves overall educational quality. it also necessitates teacher-parent collaboration, as well as community support (71.8%, 69%, 73%, 74% and 73%). the data also suggest that the pgdt programme is likely to have a significant influence on the cognitive and affective aspects of teachers’ attitudes. however, the predisposition towards practical action may have a lower probability of being influenced by the pgdt programme because of the existing gap between theory and practice. therefore, the pgdt programme demonstrates a moderate level of effectiveness in positively shaping teachers’ attitudes towards inclusion. this conclusion is drawn from the percentage scores for the programme’s impact, falling within the range of 60% and 79% for all items as outlined by bowen and power’s (2005) criteria for assessing attitude development using a likert scale. despite the programme’s positive influence on the cognitive and affective aspects of attitudes, there appears to be a gap in translating these attitudes into practical behavioural actions. the interview responses vary. for instance: ‘to be honest, i don’t believe that i have the capacity to make a difference to the learning of students with disability; it is a responsibility of special educator to teaching students with disability.’ (participant 5, te: 27 years old, male and bsc [physics] degree) ‘as far as i am concerned, i believe that it is impossible and very difficult to include students with vision problems to mathematics class; rather they are excluded and stay outside.’ (participant 3, tc: 26 years, male and holder of bsc [mathematics] degree) ‘i feel that the inclusion of students with disability cannot be beneficial for others normal students. this is because, students with disability will monopolise the teachers’ time and difficult to give appropriate attention to all students.’ (participant 1, ta: 25 years, male and holder of bsc [sport science] degree) ‘i feel uncomfortable and more stressed around students with disability in my school. including students with disability into regular class create extra work for teachers like me who don’t have experience of handling such kind of cases.’ (participant 6, tf: 25 years old, female and holder of ba [english language] degree) ‘in our culture, the society does not support students with disability believing that their disability comes from god and if we support them, we fear that the impairment may go with us to our homes. such kind of thinking and believe also has an influence on students with disabilities.’ (participant 4, td: 22 year old, female and holder of ba [geography and environmental studies] degree) on the contrary, two out of seven participants reacted positively towards the role inclusive education plays in helping students with disabilities. for example: ‘i believe that students with disability worth educating and they have capacity to learn if they are properly supported; doing this is not only the task of special educators, but also regular teachers are responsible to teach, socialise and support students with disability.’ (participant 2, tb: 23 years old, female and holder of bsc [biology] degree) ‘as a teacher, the most important thing is to be sympathetic to students with disability in and outside the classroom. i am very positive and trying my best to include such kinds of students into class activities, rather than exclude them or ignore them.’ (participant 7, tg: 24 years, male and holder of bsc [chemistry] degree) both quantitative and qualitative results highlight the importance of influencing teacher’s attitudes, especially during teacher education training. practical skills and abilities related competency table 3 suggests that graduates have developed the necessary skills to facilitate collaborative learning among learners with disabilities, as well as the capacity to provide differentiated instruction to students with disabilities (58.6% and 51.3%). however, while some teachers felt that the training programme supported the development of practical skills for collaborative work with other professionals teaching students with disabilities, about 50% believed that their programmes adequately prepared them for designing adaptable coursework and creating individualised assessments. moreover, 51% to 65.2% felt that their training only moderately or minimally supported them in acquiring the skills related to adjusting teaching objectives, organising group discussions and collaborating to address the specific needs of students with disabilities. table 3: practical skills-related competency developed as a result of the postgraduate diploma in teaching programme. table 3 also shows that teachers have minimally developed practical skills and abilities required for inclusive education (60%). these skills include conducting effective behavioural management, working with parents, engaging with communities and using various teaching materials to support students with disabilities. this indicates a need for improvement in the programme’s preparation of teachers for inclusive teaching. in this regard, six out of the seven interviewees responded that they did not have the skills and abilities necessary to make a difference in the lives of students with disabilities. it seems that the pgdt programme did not fully support the teachers in gaining the necessary skills to implement inclusive education successfully in ethiopia. for instance: ‘during the teaching practices, i have not done much to implement inclusive teaching because i did not cope with the diversity within the classroom, and time allocated for a single lesson was also 50 minutes, which is difficult to manage as a fresh teacher; i feel that i need further skills that can help me to adapt a lesson and address students with disabilities in the classroom and also outside of the classroom as i am sport science teacher.’ (participant 1, ta: 25 years, male and holder of bsc [sport science] degree) ‘our lecturers agreed with the teacher education college timetable, which was too loaded, as a result, they face difficult to effectively equip us with the necessary inclusive skills and abilities; i don’t feel confident …, uhu … i found it very challenging to have a student with disability in my class.’ (participant 2, tb: 23 years old, female and a holder of bsc [biology] degree) ‘we are required to teach students with and without disabilities at the same time in the same classroom. we need different strategies to meet the needs of different students; we need to organise group activities in classroom that include all students, which requires different skills again. we need to think how to get students with disabilities engage in learning. do you think that i have gained all those skills from “peda” training? no, to be honest, it is very difficult to manage students with disabilities.’ (participant 3, tc: 26 years old, male and a holder of bsc [mathematics] degree) ‘behaviour problem is very common in school i assigned, it overwhelmed me at first and i didn’t know what to do. i think i missed important skill that helps me to manage students’ behaviour in classroom. i feel that “peda” training is full of theory, i suggest being more practical during the training, because you can read and understand the theory part. the practical part of teaching needs more engagement.’ (participant 4, td: 22 years, female and a holder of ba [geography and environmental studies] degree) the findings suggest that the pgdt programme has not adequately equipped teachers with the necessary practical skills and competencies for inclusive teaching. this gap points to the need for teacher education to provide teachers with practical skills and hands-on experiences that can address the learning needs of students. the analysis of these findings is presented in the ‘discussion’ section. discussion based on the findings of the present study, one can safely argue that the teacher training programme in ethiopia does not adequately equip teachers with sufficient knowledge about inclusion and students with disabilities. this finding finds resonance in the emoe’s (2018) report, which indicated that ethiopian teachers generally have limited to no understanding of inclusion and specific needs of students with disabilities. this challenge is not unique to ethiopia, as studies in malaysia, greece and other parts of africa have also highlighted similar shortcomings in teacher training. for example, alias and salleh’s (2017) study conducted in malaysia revealed that teachers often lacked the requisite training with respect to understanding learners’ characteristics and needs, appropriate teaching aids and effective strategies to be employed. similarly, akalin et al.’s (2014) study found that teachers in greece faced challenges related to limited knowledge about inclusive practices and a lack of clarity regarding their roles in inclusive settings. recently, naami and saa-touh mort (2023) found that disability was notably absent from the curriculum, learning outcomes of the equity and inclusivity cross-cutting pillar, their targets and supplementary sources used in the colleges of education in ghana. in south africa, nseibo et al. (2022) found that initial teacher education had little focus on teaching and supporting learners with disabilities, especially those with severe and profound disabilities despite the country’s ratification of numerous human rights agreements that support the provision of education for all learners and the educational policies that require that teachers boost competency in these areas. participants in majoko and phasha’s (2018) study complained about a lack of exposure to relevant theories of inclusive education, superficial exposure to policy, and a lack of opportunities to teach learners with disabilities. these findings collectively highlight the global importance of enhancing teacher preparation programmes to better support the principles of inclusive education. the 2009 curriculum framework in ethiopia stipulates that teachers should have adequate knowledge about inclusion to enable them to identify and assess the diverse needs, challenges and potentials of students. this is in alignment with inclusive pedagogy, which requires teachers to be professionally knowledgeable to effectively engage with diverse students, especially in this era of inclusion (florian 2016). they are also required to have an awareness of the learners’ socio-cultural and socio-political contexts (unesco 2009). therefore, the lack of adequate preparation in terms of knowledge necessary for implementing inclusion suggests that many teachers in ethiopia may face challenges in accommodating and addressing diversity. as noted by kortjass (2012) and west and hudson (2010), teachers with limited understanding of inclusion, may resist the invitation to develop a more inclusive school. inadequate teacher training demonstrates mu et al.’s (2015) and johnstone and chapman’s (2009) point about the critical role teacher education programmes play in the successful implementation of inclusive education. these include raising awareness about inclusion among teachers so that, after training, they are equipped to support all learners in order for them to reach their full potential (hodgson & wilkerson 2013). also, it should provide teachers with essential knowledge organised in a way that would enable them to develop a deep understanding of inclusive pedagogy (lepage et al. 2010). the finding that the pgdt demonstrated moderate effectiveness in developing teachers’ attitudes towards inclusion and students with disabilities gives rise to doubts about its overall impact on shaping these attitudes. it also raises questions about the teachers’ ability to create inclusive schools and society. in light of loreman et al.’s (2013) point that teacher education can influence attitudes, the programmes must strive to close the gaps between theory and practice as suggested by munyungu (2015). in addition, it should provide opportunities for teachers to engage with diverse learners and become familiar with policies and legislation related to inclusive education. these components are equally important in the process of developing positive attitudes towards inclusion. the current pgdt in ethiopia faces a challenge, as its modules and courses are overly theoretical and too reliant on the medical model of disability, which promotes negative perceptions of disability (zelalem 2021). as highlighted by galović, brojčin and glumbić (2014), the adherence to the medical model contributed to teachers’ development of negative attitudes towards inclusion and students with disabilities in ethiopia, leading to determinist beliefs about children’s worth and abilities. notably, this approach has hindered the efforts of ethiopian teacher education institutions in creating supportive and inclusive learning environments for students with disabilities (tefera, adams & mulatie 2015). hart et al. (2004) argued that inclusive pedagogy begins with the notion that all learners are different and that human diversity should not be neglected or disregarded. therefore, learning should be based on positive differentiation, which contrasts segregation and mindless inclusion. in essence, teachers need to accept and recognise individual differences as a natural aspect of the human condition in the classroom (rouse 2010) and overcome any constraints imposed by deterministic beliefs (hart et al. 2004). therefore, it is important to address the complexity of teachers’ attitudes towards inclusion and students with disabilities during teacher training (florian & spratt 2013). the training should be well-structured and include hands-on courses and assignments (berisha & vula 2021). modules and courses should help teachers understand the environmental, social and cultural contexts of learning and teaching (eds. alur & timmons 2009). additionally, it should expose teachers to various pedagogical approaches (pather 2019), and equip them with the competencies to navigate the complex and multifaceted environment of an inclusive classroom (emoe 2009). this will ensure that effective teaching and learning, along with appropriate support strategies, are accessible in inclusive educational settings (florian & black-hawkins 2011). such training will not only benefit learners with diverse educational needs but also contribute to the broader goal of establishing an inclusive society. however, ill-prepared teachers who lack the fundamental skills and abilities necessary for inclusion, often experience dissatisfaction, which may inadvertently affect students, potentially undermining the confidence and overall success of learners with disabilities (jordan, schwartz e. & mcghie-richmond 2009). the ‘conclusion’ section presents the final findings and recommendations. conclusion in this article, the analysis of the effectiveness of a teacher education programme in ethiopia in developing teachers’ competencies for inclusion is presented. as the findings of the present study have shown, teacher training in ethiopia is still lagging behind in terms of keeping pace with global changes that support teachers in developing essential competencies for the successful implementation of inclusive education. the current system falls short in providing teachers with a sufficient understanding of inclusion, developing positive attitudes and adequately exposing them to practical, hands-on experience. this shortcoming impedes the equitable delivery of quality education. to address this, substantial changes in policies and practices are necessary, including an overhaul of the teacher education curricula, fostering positive attitudes and improving practical learning experiences for teachers. these improvements will ensure that teachers are well-prepared to cater to the diverse needs of learners and establish an inclusive learning environment. this study has limitations, one of which is its focus on a single university in ethiopia, excluding other important stakeholders who could offer perspectives different from those of teachers. to gain a more comprehensive understanding, future research should encompass all 10 universities in ethiopia and involve a broad range of participants. such an approach will provide diverse perspectives and insights to better advance teacher preparation for inclusive education in ethiopia. acknowledgements this article is based on the first author’s thesis entitled ‘effectiveness of secondary school teachers’ preparation for inclusion in ethiopia’ towards the doctoral degree in the department of inclusive education, unisa, south africa, with prof phasha as supervisor. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions the conceptualisation of the article was a collaborative effort between a.t.k. and t.n.p. 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journal of research in teacher education 12(1), 49–60. abstract introduction research methods and design data analysis results discussion conclusion acknowledgements references footnote about the author(s) lisa visagie department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa helene loxton department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa leslie swartz department of psychology, faculty of arts and social sciences, stellenbosch university, stellenbosch, south africa paul stallard department for health, faculty of humanities and social sciences, university of bath, claverton down, bath, united kingdom citation visagie, l., loxton, h., swartz, l. & stallard, p., 2021, ‘cognitive behaviour therapy-based early intervention and prevention programme for anxiety in south african children with visual impairments’, african journal of disability 10(0), a796. https://doi.org/10.4102/ajod.v10i0.796 original research cognitive behaviour therapy-based early intervention and prevention programme for anxiety in south african children with visual impairments lisa visagie, helene loxton, leslie swartz, paul stallard received: 31 aug. 2020; accepted: 26 nov. 2020; published: 29 jan. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: anxiety is the most common psychological difficulty reported by youth worldwide and may also be a significant problem for children with visual impairments. cognitive behaviour therapy (cbt) interventions have proven to be successful in treating childhood anxiety; however, mostly these are not suitable for children with visual impairments, as the materials used are not sufficiently accessible to this population. objectives: the present study was motivated by the dearth of research on this topic and aimed to examine the effects of a specifically tailored, group-based, universally delivered, cbt intervention for anxiety in children with visual impairments and to examine the influence of three predictor variables (i.e. age, gender and level of visual impairment) on prevention effects. method: a randomised wait-list control group design with pre-, postand follow-up intervention measures was employed. the final sample of 52 children (aged 9–14) with varying degrees of visual impairment received the anxiety intervention. participants were followed over a course of 10 months during which their anxiety symptoms were assessed quantitatively at four time points (t1–t4). results: the results indicated that the anxiety intervention did not significantly decrease symptoms of anxiety within the intervention groups. however, the intervention appeared beneficial for girls, younger children and legally blind participants. conclusion: this study demonstrated how cbt interventions can be adapted for use in children with visual impairments. results obtained provide a foundation upon which future updated anxiety intervention programmes can be built, meeting the need for further research in this area. keywords: anxiety; prevention; cognitive behaviour therapy; visual impairment; south africa; children; schools-based interventions; efficacy. introduction childhood anxiety is common, with most anxiety being functional and beneficial, providing motivation and preventing excessive risk-taking. however, for a number of children, anxiety has a negative effect and interferes so significantly in their daily functioning, or is so developmentally inappropriate, that the diagnosis of an anxiety disorder may be warranted (campbell 2003). if left untreated, anxiety symptoms persist and increase in severity (prinzie et al. 2014; weems & silverman 2013) placing children at risk for depression, substance abuse, higher suicide ideation, illicit drug dependence, higher rates of school drop-out and unemployment in late adolescence and adulthood (ahlen et al. 2012; bittner et al. 2007; donovan & spence 2000; mcloone, hudson & rapee 2006; stallard 2010; stallard et al. 2007). children with physical disabilities are more prone than their non-disabled peers to the development of psychological difficulties (including anxiety) (gullone 1996; ollendick, matson & helsel 1985), and a particular high-risk group are children with visual impairments (visagie et al. 2013). despite this increased risk, children with visual impairments have been neglected in previous fear and anxiety research. the last international study on this research topic was conducted by weimer and kratochwill (1991) in america more than two decades ago. given their increased ‘risk’, it is important to develop appropriate interventions to equip visually impaired children with the necessary skills and strategies to manage anxiety symptoms when they arise. cognitive behaviour therapy (cbt) is a well-established, highly researched, evidence-based intervention for the treatment and prevention of anxiety (silverman, pina & viswesvaran 2008; walkup et al. 2008). however, despite cbt’s encouraging outcomes, less than one quarter of children who experience anxiety difficulties receive treatment (korkodilos 2016; lawrence et al. 2015; merikangas et al. 2010), and of those who do, many will terminate treatment prematurely (pina et al. 2003; wergeland et al. 2015), fail to respond (rey, marin & silverman 2011) or continue to experience recurrent difficulties despite treatment (last et al. 1996). a potential strategy to overcome these limitations, and manage the high prevalence of anxiety and its negative consequences, is to place greater focus on anxiety prevention (johnston, kemps & chen 2018). prevention programmes aim to reduce the incidence or onset of mental health disorders by reducing risk factors and developing protective factors to prevent the development of these disorders (world health organization 2004). prevention programmes are usually conceptualised by their intended focus, either indicated (targeted to participants displaying sub-clinical or mild symptoms of disorder), selective (targeted to participants identified as being at risk of developing a particular disorder) or universal (targeted towards whole populations regardless of risk status) (liddle & macmillan 2010; mrazek & haggerty 1994; world health organization 2004). universally delivered cbt-based anxiety prevention programmes have shown very positive results; however, they have focused primarily on children without disabilities (see johnston et al. 2018 for an overview). the most well-known cbt group-based anxiety prevention programmes are kendall’s (1990) coping cat programme and barrett’s (2005) friends programme. although cbt-based anxiety intervention programmes have reported promising outcomes, these programmes are not suitable for children with visual impairments, as much of their content relies on visual presentation or representations (i.e. printed worksheets, cartoons, pictures and video-material). to the researchers’ knowledge, there is currently no anxiety intervention programme tailored to meet the specific needs of children with visual impairments. considering the given factors and the notion that children with visual impairments are possibly more prone to the development of anxiety (visagie et al. 2013), the researchers and colleagues (visagie 2016; visagie, loxton & silverman 2015; visagie et al. 2017) developed and implemented a specifically tailored cbt-based anxiety intervention programme (positive and motivating programme – pam) for south african visually impaired children. this article aims to overcome gaps in the childhood anxiety literature and presents preliminary results obtained from the implementation of the pam programme. the objective was to examine the effects of a specifically tailored, group-based, universally delivered, cbt intervention for anxiety in children with visual impairments and to examine the influence of three predictor variables (i.e. age, gender and level of visual impairment) on outcomes. research methods and design a specifically tailored cbt-based anxiety intervention (pam programme) for south african children with visual impairments was evaluated in two special schools (school 1 and school 2). the study was set up as a randomised wait-list control group design with pre-, postand follow-up intervention measures. participants were randomly assigned to either an immediate intervention group (iig) or a delayed intervention group (dig) at their school. participants all assenting children for whom written parental consent was granted took part. inclusion criteria required participants to be in grades 4 to 7 (aged between 9 and 14 years), be able to read and write (braille or print) and have no other disability apart from their visual impairment. all children who met inclusion criteria received the pam programme regardless of their anxiety status (universal prevention). a final sample of 52 middle-childhood (mean age = 11.46, standard deviation [sd] = 1.4) girls (n = 24, 46.15%) and boys (n = 28, 53.85%) participated in the study and were followed over a period of 10 months. schools participants attended two special schools (school 1 and school 2). these are the only two schools that specifically cater for children who have visual impairments in the western cape province of south africa – the province where the study was undertaken. the two schools are approximately 110 km apart and differ widely in terms of their geographical location and the availability of resources. the impact of apartheid and its policies have caused severe economic, social and spatial disparities amongst various racial groups in south africa and this is especially evident at school 1. this school was historically a school for black children under the bantu or black education act (act no. 47, 1953) (union of south africa 1953), and still today children who attend this school are primarily from disadvantaged communities, with approximately 85% – 90% living below the poverty line, with their parents unemployed and receiving disability grants, and the majority of children receiving government child grants (personal communication, school psychologist at school 1). the socio-economic circumstances of children at school 2 are similar, as approximately 70% of learners are black or coloured1 and an estimated 55% of children live in poverty and receive government child grants (personal communication, school psychologist at school 2). the socio-economic situation of these children is in keeping with the general situation in south africa, where over half of the households in south africa live below the poverty line (budlender 2018). however, despite children having similar socio-economic backgrounds, school 2 is situated in a more secure and affluent geographical location. in addition, because school 2 was historically a school for white children (under the bantu education act) (union of south africa 1953), the school has better infrastructure and facilities. please note that the racial terms used in this article are controversial in south africa and have been referred to for the purpose of reporting descriptions between racially different south african communities that exist as a result of the country’s political past. these terms are not used with the intention to be discriminatory. visual impairment participants had varying degrees of visual impairment and were categorised as legally blind (n = 17) or partially sighted (n = 34) (data were missing for one participant). children categorised as legally blind either had no measurable light perception or had a very limited degree of light perception and experienced difficulties functioning in unfamiliar environments without assistance and could not read printed material. intervention groups after assenting to participate, the 52 participants were randomly assigned to either an iig or dig at their respective school. during data analysis, the iigs from school 1 and school 2 were combined to form one iig, and the digs from school 1 and school 2 were combined to form one dig. the combined iig included 27 participants (15 boys, 12 girls) with a mean age of 11.44 (sd = 1.47); and the combined dig included 25 participants (13 boys, 12 girls) with a mean age of 11.58 (sd = 1.35). assessments participants (n = 52) were assessed on four separate occasions. the time line below describes these four assessments for both the iig and dig (t1 = base-line, time 1): time 1 (t1) pre-intervention assessment for the iig pre-waitlist assessment for the dig time 2 (t2) immediate 1 week post-intervention assessment for the iig post-waitlist assessment for the dig time 3 (t3) 3-month follow-up intervention assessment for the iig immediate 1-week post-intervention assessment for the dig time 4 (t4) 3-month follow-up assessment for the iig. on each occasion two standardised measures were completed: the revised child anxiety and depression 30-item scale (rcads-30) (chorpita, moffitt & gray 2005; sandín et al. 2010) is a self-report measure, which assesses anxiety and depression symptoms across six domains: social phobia, separation anxiety, obsessive compulsive disorder, panic disorder, generalised anxiety disorder and major depressive disorder. participants are asked to rate the frequency with which symptoms occur on a 4-point likert scale ranging from ‘never’ (scored 0) to ‘always’ (scored 3). a total scale score is obtained by summing the scales’ 30 items yielding a total score of between 0 and 90. the penn state worry questionnaire for children (pswq-c) (chorpita et al. 1997) is an 11-item questionnaire, which assesses the tendency to engage in excessive generalised and uncontrolled worry. respondents are asked how often each item applies to them by indicating answer options on a 4-point likert scale ranging from ‘never true’ (scored 0) to ‘always true’ (scored 3). a total scale score is obtained by summing the scales’ 11 items yielding a score between 0 and 33, with higher scores indicating a greater tendency to worry (muris, meesters & gobel 2001; stallard et al. 2014). intervention protocol and materials the pam programme (visagie 2016) is a brief cbt-based early intervention and prevention programme for anxiety, specifically tailored to meet the needs of visually impaired children between the ages of 9 and 14 years. participants received 10 pam group sessions over the course of 5 weeks. sessions were delivered twice weekly and lasted approximately 45 min. sessions were delivered in either english or afrikaans depending on the children’s language of schooling (english at school 1 and afrikaans at school 2). during the programme, children participate in activities, which teach coping skills and problem-solving techniques, thereby helping them to deal more effectively with anxiety. activities teach skills to identify feelings; to learn to relax, to identify unhelpful thoughts and replace them with more helpful thoughts (cognitive restructuring), how to face and overcome daily problems and challenges and how to illicit family and peer support (barrett, lowry-webster & turner 1999; stallard et al. 2007; visagie 2016). the programme uses a tangible soft toy dog (named pam) with a collar and eight symbolic charms to represent key anxiety management skills. charms include the following: (1) a heart, a reminder that feelings come from your heart; (2) a hat, a reminder that thoughts come from your head; (3) a butterfly, a reminder of how the body reacts to anxiety (i.e. the butterflies in your tummy); (4) a noodle, a reminder to use relaxation strategies to help the body relax (like a cooked noodle); (5) a musical note, a reminder to do things, which help you to relax and make you feel good (e.g. listen to music, sing a song, play a game, etc.); (6) a shoe, a reminder of the steps to take to face and solve your problems; (7) a star, a reminder to reward yourself for trying your best; and (8) a hand, a reminder to reach out for others when you need help. the format of the programme included large and small group work sessions, role plays, games, stories, activities and quizzes (more information pertaining to the programme’s content can be attained on request). the 10 sessions of the pam programme were delivered by the first author with a research facilitator present. the first author is a registered counselling psychologist with ample experience and knowledge relating to developmental psychology and cbt. research facilitators had at least an honours degree in psychology and had completed a cbt module as part of their academic work. the first author trained and familiarised the facilitators as to the content of the programme. although they were not required to deliver any sessions individually, they facilitated smaller groups within the larger group with the first author present to provide guidance. each research facilitator received a copy of the pam programme manual. the manual describes the goals and strategies for each session, the desired outcomes and the specific activities that are to be completed in each session. to reinforce and generalise sessions, homework tasks were assigned to each session and participants were required to bring completed homework activities to the next session. data collection procedures participants were asked to complete three separate measures, the first being a biographical questionnaire, which was only completed at t1, as well as the rcads-30 and the pswq-c (these measures are described in more detail here). the first author and two research facilitators (two postgraduate psychology students) administered the measures in groups at the two identified special schools. measures were available in english or afrikaans depending on the children’s language of schooling (english at school 1 and afrikaans at school 2). data collection took place in classroom settings at both schools, where participants sat at desks and completed the measures themselves. data collection was conducted in a manner that accommodated all participants’ specific visual needs (visagie & loxton 2014). questionnaires were read aloud to participants to ensure that questions were correctly understood. participants were informed that all questionnaire responses were confidential. participants indicated their answers using their braille machines or enlarged versions of the questionnaires (42.00 cm × 59.40 cm). if a participant required extra attention, one of the researchers assisted him or her individually to complete their questionnaires. upon completion of the questionnaires, all participants were encouraged to ask any questions that they may have had. at t2, after all 10 pam sessions had been delivered to the iig, the anxiety status of all participants (n = 52) (iig and dig) was assessed. data collection procedures occurred similarly to those at t3; after delivering all 10 pam sessions to the dig the anxiety status of all participants (n = 52) (iig and dig) was reassessed. data collection once again occurred, as with t1 and t2. at t4, 3 months after delivering the pam programme to the dig, the anxiety status of all participants (n = 52) (iig and dig) (that in effect was at 3-month follow-up for the dig and 6-month follow-up for the iig) was again assessed. data analysis the statistical package for the social sciences (spss for windows version 23.0) (ibm 2015) was used to calculate descriptive and non-parametric statistics. a series of repeated measures of analyses of variance (anova’s) were conducted to compare reports of anxiety within the iig and dig across time (t1–t4) and differences between the iig and dig at each of the four times of testing were explored using one-way anova. these between-group and within-group effects are reported here. ethical consideration permission to conduct the study was obtained from the western cape education department in south africa (reference: 20130507-10635). ethical approval from stellenbosch university research ethics committee: human research (humaniora) (hs888/2013) was also obtained. after the two special schools consented to the study, parents were informed of the project via an information sheet and consent form, which they were asked to sign and return. parental consent was granted for 59 out of a possible 83 children (71%). after enrolment three participants (n = 3) withdrew from the study and one participant (n = 1) moved to a different school. the remaining 55 participants were followed over a period of 10 months. however, at the time of data analysis, the data of 52 participants could be used. this was because of the necessary exclusion of participants (n = 3) from data analysis as a result of one measurement (t1, t2 or t3) being missing. results scores on the revised child anxiety and depression 30-item scale and penn state worry questionnaire for children overall, results indicate that mean base-line scores on the rcads-30 and pswq-c for both groups (iig and dig) were slightly higher when compared with post-intervention (t3) scores. at baseline, participants in the iig (n = 27) reported a mean total rcads-30 score of 27.77 and a mean total pswq-c score of 12.84, whilst participants in the dig (n = 25) reported a mean total rcads-30 score of 34.52 and a mean total pswq-c score of 15.32. these initial mean scores were lower than expected and fell below the clinical range on the rcads-30 of mean scores greater than or equal to 49. at t3, participants in the iig (n = 27) reported a mean total rcads-30 score of 26.99 and a mean total pswq-c score of 11.29, whilst participants in the dig (n = 25) reported a post-intervention (t3) total mean rcads-30 score of 29.43 and total mean pswq-c score of 12.64. four participants (n = 4) displayed elevated anxiety scores at baseline, and at post-intervention (t3) only one participant (n = 1) reported anxiety symptoms which fell within the clinical range. this participant was brought to the attention of the school psychologist for further follow-up. tables 1 and 2 present the means and sd for the iig (n = 27) and dig (n = 25) on the rcads-30 and pswq-c from t1 to t4, respectively. table 1a: means and standard deviations for the total score on the revised child anxiety and depression 30-item scale for the immediate intervention group (n = 27) and delayed intervention group (n = 25) from t1 to t4. table 1b: means and standard deviations for the total score on the revised child anxiety and depression 30-item scale for the immediate intervention group (n = 27) and delayed intervention group (n = 25) from t1 to t4. table 2a: means and standard deviations for the total score on the penn state worry questionnaire for children for the immediate intervention group (n = 27) and delayed intervention group (n = 25) from t1 to t4. table 2b: means and standard deviations for the total score on the penn state worry questionnaire for children for the immediate intervention group (n = 27) and delayed intervention group (n = 25) from t1 to t4. overall 2 (groups) × 4 (time points) anovas were performed on the total scores of the rcads-30 and pswq-c for the iig (n = 23) and dig (n = 22) separately. the multivariate main effects for time on both these measures were non-significant for both the iig and dig on either the rcads-30: (f[3, 20] = 0.481, p = 0.699 [iig]: f[3, 19] = 1.202, p = 0.336 [dig]) or pswq-c: (f[3, 20] = 1.538, p = 0.235 [iig]: f(3, 19) = 1.408, p = 0.271 [dig]). within group and between effects results of the multivariate main effects for time were not significant for both the iig and dig on either the rcads-30 (f[3, 20] = 0.481, p = 0.699 [iig]: f(3, 19) = 1.202, p = 0.336 [dig]) or the pswq-c (f[3, 20] = 1.538, p = 0.235 [iig]: f(3, 19) = 1.408, p = 0.271 [dig]). there were no significant between group effects. total group effects when taking the statistical sample as a whole (n = 52) into account, there was a significant decline in the total worry score on the pswq-c from pre(t1) to post(t3) test (f[1, 51] = 4.436, p = 0.040). results on the rcads-30 for the total sample (n = 52) from t1 to t3 were non-significant (f[1, 51] = 2.347, p = 0.132). effects on the six sub-scales of the rcads-30 from t1 to t3 were also non-significant (f[6, 46] = 1.080, p = 0.388). effects of predictor variables when considering the variables of age (younger 9–11-year-old vs. older 12–14-year-old children), gender (girls vs. boys) and level of visual impairment (legally blind vs. partially sighted), the following was noted: in terms of age, there was a significant interaction between time and age for younger children (n = 30) on the rcads-30 (f[1, 29] = 11.771, p = 0.002). thus, the younger participants’ mean score at t3 (m = 24.85) was significantly lower than at t1 (m = 32.68). multivariate repeated measures anova’s were also performed on the six subscale scores of the rcads-30. there was a significant multivariate main effect for the younger participants (f[6, 24] = 2.976, p = 0.026). post hoc comparisons with bonferroni adjustments indicated significant reductions on the major depression (p = 0.001) and obsessive compulsive disorder (p = 0.003) subscales. results on the pswq-c relating to age were non-significant. anxiety scores on the rcads-30 and worry scores on the pswq-c for boys (n = 28) and girls (n = 24) were also compared. results on the rcads-30 were non-significant for both boys and girls). however, results on the pswq-c were significant for girls with (f[1, 23] = 13.411, p = 0.001) with the mean score at t3 (m = 11.67) being significantly lower than at t1 (m = 15.77). total mean scores on the rcads-30 and pswq-c for the legally blind (n = 17) and partially sighted (n = 34) groups were also compared. there was a significant interaction between time and vision for legally blind participants on the rcads-30 (f[1, 16] = 7.845, p = 0.013). thus, for the legally blind group the mean score at t3 (m = 24.22) was significantly lower than at t1 (m = 31.41). multivariate repeated measures anova’s were also performed on the six subscale scores of the rcads-30 with a significant effect for the legally blind group (f[6, 11] = 4.55, p = 0.048). post hoc comparisons with bonferroni adjustments indicated that for the legally blind group the mean score on major depression at t3 (m = 3.24) was significantly (p = 0.016) lower than at t1 (m = 4.74), and the mean score on obsessive compulsive disorder at t3 (m = 3.88) was significantly (p = 0.014) lower than at t1 (m = 6.79). results on the pswq-c were non-significant. discussion the purpose of this study was to explore the effect of a specifically tailored cbt-based programme (pam programme) on participant-reported symptoms of anxiety. the pam programme did not lead to post intervention reductions in self-reported anxiety and worry scores on the rcads-30 and pswq-c. these non-significant results may relate to the fact that base-line anxiety symptoms were unexpectedly low. the overall mean score within each group virtually remained unchanged from t1 to t4. a second aim of the present study was to examine the effects of the predictor variables of age, gender and level of visual impairment. younger (9–11-year-olds) and legally blind participants reported significant reductions in anxiety scores on the rcads-30 from pre(t1) to post(t3) test. girls also reported a significant reduction in worry scores on the pswq-c. thus, although there were no overall effects, it appears that the pam programme may be beneficial for girls, younger participants (aged 9–11) and legally blind children. results relating to the legally blind group are particularly noteworthy, as children with severe visual impairments have been identified as a high-risk group (loxton, visagie & ollendick 2012; visagie et al. 2013, 2015). it is also encouraging to note the effects relating to a decrease in symptoms of major depression for younger (age 9–11-year-olds) and legally blind children. these results are important as it has been noted that some larger scale depression prevention studies have recently found non-significant universal effects (herman et al. 2009; rowling & kasunic 2006; stewart 2008; taylor et al. 2014). the absence of an overall effect could be masked by two factors. firstly, the sample size is small resulting in reduced statistical power to detect small differences. secondly, initial levels of anxiety were unexpectedly low and, with the exception of four participants, all were in the ‘normal’ range at base-line. thus, the groups could not be expected to differ substantially after implementation of the pam programme. this is a limitation of universal approaches and raises the question of whether it is worth the time and money to offer a programme to a whole group of children if the majority are not anxious (rose, miller & martinez 2009). according to a public health universal approach, even small effects can be meaningful, as decreasing the distribution of symptoms in the population by even a small amount may often correspond to a reduction in the occurrence of overall cases of disorder (andrews, szabo & burns 2002; mychailyszyn et al. 2012). another limitation relates to the lack of multiple-informants for data collection. previous studies have noted non-significant results post-intervention on participant self-reports, however, when considering other anxiety measures (e.g. diagnostic interviews and parent or teacher reports) significant intervention effects were noted (bernstein et al. 2005, 2008; ginsburg 2009; nauta et al. 2003; urao et al. 2016; wood et al. 2009). this may have also been the case in this study, but because additional teacher reports to assess intervention outcomes were not returned, these sources of data could not be included. a further limitation relates to the absence of a control group to assess for possible changes being the result of the natural passing of time (i.e. maturation). this would have been ideal, but as a result of the target population already being so limited in size, the inclusion of a control group was not feasible. this would have decreased numbers of participants in the iig and dig even further. lastly, it may also be that significant effects may present with ensuing time as children become more adept at using their newly learnt anxiety management skills (mostert & loxton 2008). conclusion our results indicate that the pam programme did not bring about a significant decrease in symptoms of anxiety within a group of visually impaired children. however, our results suggest that the pam programme may be more beneficial for girls, younger participants (aged 9–11) and legally blind children. the present study is the first of its kind to evaluate the effects of a specifically tailored cbt-based anxiety intervention programme for children with visual impairments. this population has been grossly neglected in previous child anxiety research, and despite limited results our study provides an insight into how traditional cbt interventions can be adapted for use with this group. participants perceived the pam programme to be enjoyable and helpful, as was evident from their enthusiasm and impromptu responses throughout programme sessions. results obtained from this study provide a good foundation upon which future up-dated anxiety intervention programmes can be built. thus, continued research in the area of anxiety intervention and prevention for this population should be promoted. acknowledgements the authors would like to thank prof. wendy silverman (yale university) for her invaluable comments and insights during the process of completing this research; mr. henry steel for his assistance with the statistical analysis; jacqueline gamble for her technical support and editing of the text; and most importantly, the school principals, school psychologists and the participants at the two schools for their willingness to help and participate, as without them this study would not have been possible. this study is based on a phd dissertation by the first author, lisa visagie, titled: ‘development, implementation and evaluation of a cognitive behavioural therapy based intervention programme for the management of anxiety symptoms in south african children with visual impairments’, submitted at stellenbosch university in 2016. portions of the text of the article are taken from the dissertation, available for free download at: https://scholar.sun.ac.za/handle/10019.1/100110 competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions l.v., h.l., l.s. and p.s. conceived of the presented idea, developed the theory and performed the computations and verified the analytical methods. h.l. and l.s. supervised the findings of this work. all authors discussed the results and contributed to the final manuscript. funding information the financial assistance of the national research foundation (nrf), south africa, as well as the fulbright scholarship programme, towards this research is hereby acknowledged. data availability statement the authors confirm that the data supporting the findings of this study are available within the article and its supplementary materials. for full information please see visagie (2016). disclaimer opinions expressed and conclusions arrived at are those of the authors and are not necessarily to be attributed to the nrf or the fulbright scholarship programme. references ahlen, j., breitholtz, e., barrett, p.m. & gallegos, j., 2012, ‘school-based prevention of anxiety and depression: a pilot study in sweden’, advances in school mental health promotion 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https://www.who.int/mental_health/evidence/en/prevention_of_mental_disorders_sr.pdf. footnote 1. we use terminology in current south african equity legislation. we do not believe that these categories have any genetic or scientific basis, but the categories have social meaning in contemporary south africa. abstract introduction research methods and design results discussion conclusion acknowledgements references appendix 1 about the author(s) dane isaacs desmond tutu centre for religion and social justice, faculty of arts and humanities, university of the western cape, cape town, south africa developmental, capable and ethical state division, human sciences research council, cape town, south africa precious tirivanhu developmental, capable and ethical state division, human sciences research council, cape town, south africa tlou m. ramoroka developmental, capable and ethical state division, human sciences research council, pretoria, south africa department of development planning and management, faculty of management and law, university of limpopo, limpopo, south africa mokhantšo makoae developmental, capable and ethical state division, human sciences research council, cape town, south africa noncedo maphosho developmental, capable and ethical state division, human sciences research council, cape town, south africa citation isaacs, d., tirivanhu, p., ramoroka, t.m., makoae, m. & maphosho, n., 2025, ‘a theory of change for the inclusive education for learners with intellectual disabilities in south africa’, african journal of disability 14(0), a1516. https://doi.org/10.4102/ajod.v14i0.1516 original research a theory of change for the inclusive education for learners with intellectual disabilities in south africa dane isaacs, precious tirivanhu, tlou m. ramoroka, mokhantšo makoae, noncedo maphosho received: 10 july 2024; accepted: 24 mar. 2025; published: 13 aug. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: since the implementation of the inclusive education policy in 2001 in south africa, several milestones have been celebrated. nevertheless, studies have reported the significant challenges in the implementation of the policy for learners with disabilities across schools in south africa, which impede transformation. objectives: reflecting on key research insights from a recent study, this article argues for the development of a theory of change (toc) as a road map or blueprint for implementing inclusive education for learners with intellectual disabilities in south africa. a toc is imperative for bridging the gap between policy implementation and outcomes. method: a qualitative research design was adopted for the study. data were collected through a desktop review, 12 key informant interviews and 10 focus group discussions with key role players and stakeholders in various positions in the education system (i.e. senior education specialists, special needs teachers, one education operations support officer, a principal, deputy principals and head of departments). the data collected were analysed thematically. results: the findings of the study highlighted progress regarding government financial resources and also the various structural barriers impeding the implementation of inclusive education for learners with intellectual disabilities. conclusion: this article encourages the continued development of theories of change to promote the effective implementation and ensure quality inclusive education for learners with disabilities in south african schools. contribution: this article contributes a potential toc to guide the effective implementation of inclusive education policy and practices for learners with intellectual disabilities in the south african schooling system. keywords: implementation of the education white paper 6; inclusive education; learners with intellectual disabilities; south africa; theory of change. introduction there is growing recognition by policymakers, development practitioners and researchers on the potential role of theories of change in guiding the implementation of social policies and enhancing impact. in the context of educational transformation policies, a theory of change (toc) plays multiple roles, assisting policymakers and key stakeholders to frame their transformation vision, guiding strategic choices, untangling complexities, guiding monitoring and evaluation and clarifying key change pathways towards the desired policy results (clark 2021; intrac 2024; salzano & perrier 2024). a toc has its historical roots in the discipline of theory-driven evaluation, which gained popularity in the 1990s (goldsworthy 2021; reinholz & andrews 2020). weiss (1995) popularised the phrase ‘theory of change’ through the efforts of the roundtable on community change and the aspen institute. according to weiss (1995:70), the toc is an explicit process of thinking through and documenting how a programme or intervention is supposed to work, why it will work, who it will benefit (and in what way) and the conditions required for success. toc is defined as a narrative: [d]escribing the whole chain of influences (from outputs to impacts) of a project or programme up to its intended contribution to improving the lives of people in poverty, which is the aim of all our interventions. (goodier, apgar & clark 2018:1) rogers (2014:1) defines a toc as a graphic presentation that explains how activities are understood to produce a series of results that contribute to achieving the final intended impacts. toc is also referred to as a ‘road map or blueprint for getting from here to there’ (stachowiak 2013:2; stein & valters 2012:3). the education white paper 6 (ewp6) (special needs education: building an inclusive education and training system) is a policy on inclusive education launched in south africa in 2001. it promotes the education of all learners in south africa. the policy also seeks to address all forms of learning barriers including transforming the curriculum, resource allocation and environments for learning, to ensure that all learners have access to equitable and inclusive quality basic education through public schools (dalton, mckenzie & kahonde 2012). in 2014, the policy on screening, identification, assessment and support (sias) was further launched. the sias policy aims to provide learners with learning barriers with multi-layered support and encourages increased learner participation in mainstream schools (makoae et al. 2023). research shows that several milestones in the form of structural, process and curriculum changes that the government introduced to bring about social change in the sector have been achieved (du plessis 2013; mpu & adu 2021). the changes recognised that exclusion from effective and equitable public education entailed the intersection of disability and institutional racism with child and youth vulnerabilities. nevertheless, studies also report tenacious challenges in the implementation of the policy, particularly for learners with disabilities (makoae et al. 2023). these challenges include the inadequate training of teachers, lack of parental support and involvement, poor resource allocation and curriculum challenges for learners with intellectual disabilities (makoae et al. 2023; mckenzie 2021). the missing link between policy implementation and outcomes is a toc. presently, there is no explicit toc that defines expected results, outlines the envisaged change pathways to attain results and outlines key assumptions about factors that lead or deter successful implementation of inclusive education in south africa. drawing on the key findings from a recent study (that aimed to evaluate the access to education support and services for children and youth with disabilities), the article presents a toc towards the effective implementation of inclusive education for learners with intellectual disabilities in schools in south africa. a strong toc can clarify any presumptions made about success of the implementation of the ewp6 with a focus on learners with intellectual disabilities and provide justification based on research and practice data currently available (goldsworthy 2021; kerr 2024; reinholz & andrews 2020). this can assist in evaluating the policy’s merits and potential to provide the desired results, as well as in delivering downstream programmes more successfully. it can also assist in informing the key stakeholders on the aims of the policy and providing justification for government or charitable expenditures. this enhances social accountability as societies have reached a stage where they require justification for inclusive education implementation (loreman 2007). the value of a toc for evaluation is another justification for its development as it guides development of indicators for inclusive education for learners with intellectual disabilities and allows monitoring and evaluation of the implementation process. availability of this strategic tool in south africa could assist the department of basic education (dbe) and other stakeholders to systematically assess progress and plan for the provision of inclusive education for this group of learners. by explaining the strategy for transitioning from programme delivery to outcome achievement, one will recognise and gain insight into the collection of circumstances, actions and procedures that facilitate change (goldsworthy 2021; mintz & roberts 2023). in the next section, the methodology of the study is presented, and insights into the primary findings are also provided. these findings guided the development of a toc which is presented in the proceeding section. this is followed by a discussion outlining a toc in driving the implementation process for inclusive education for learners with intellectual disabilities in south africa, before concluding. research methods and design study design the broader study adopted a qualitative investigation in its evaluation of the access to education support and services for children and youth with disabilities. data for the study were collected through a desktop review and empirical data collection. however, for the purpose of the article, the empirical aspects of the methodology only will be described. recruitment and data collection the empirical data for the study were collected through a series of key informant interviews (kiis) and focus group discussions (fgds). the study sought to get the input of relevant stakeholders on the strengths and challenges faced with regard to the implementation of the white paper 6 for children and youth with disabilities in south africa. adopting a purposive sampling strategy, the study aimed to recruit a sample of key role players and stakeholders in the education sector (i.e. senior education officials, special needs teachers, class teachers, school-based support team [sbst] members, principals of institutions that provide education and support services for children and youth with disabilities [whether mainstream, full-service, special school or resource centre], principals of mainstream education schools [near the index of schools providing education for children with disabilities] and members of school-governing bodies). before commencing with the recruitment of participants, the research team sought to obtain ethical clearance from the nine provincial departments of education in south africa. once ethical clearance was obtained from the respective provincial departments of education, the research team searched the website of each provincial department to obtain a list of special needs schools, mainstream schools and full-service schools in these respective provinces. these schools were then contacted and informed about the study via telephone and/or email. the schools were included in the final sample of the research study on the following basis: (1) the obtaining of ethical approval from provincial departments; (2) their willingness to participate in the study; and (3) the availability of key role players and stakeholders in the education sector to participate in the study. the final number of schools included in the study were seven schools consisting of six special needs schools focused on intellectual disabilities and one primary full-service school in four education districts in three provinces in south africa that is mpumalanga, limpopo and gauteng. the kiis and fgds were focused on assessing the progress, but also the challenges impeding the implementation of inclusive education for learners with disabilities in south africa. key informant interviews were conducted by researchers on the study. twelve kiis were conducted across the seven schools. it comprised five special needs teachers, two school psychologists, two senior education specialists, a principal and a deputy principal of a special needs school and an education operations support officer across the three provinces. the kiis were guided by interview guides, and their duration was 12–80 min. because of the sensitive nature of the study, several participants were not comfortable engaging with the researchers in a one-on-one interview setting. they instead preferred group interaction because they did not want to be directly implicated. for this reason, participants were invited to participate in 10 fgds. the questions in the kiis informed the questions in the fgds. the 10 fgds were conducted across the seven schools by researchers on the project. the fgds were divided according to two categories: the first category had participants who were a part of the management of special needs schools and had roles such as deputy principals, head of departments and a chief educational psychologist. a total of four fgds were conducted under this group. the second category comprised six fgds hosted with teachers. five of these fgds comprised special needs teachers, and one consisted of teachers in a full-service school. the duration of the fgds was between 30 min and 80 min. data analysis the first author analysed 20 transcripts. these transcripts consisted of 12 kiis and eight fgds. these transcripts provided a comprehensive insight into the progress, but also the challenges impeding the implementation of inclusive education for learners with intellectual disabilities. once these kiis and fgds were transcribed, the first author proceeded to analyse the data through inductive thematic analysis. the first step of the analysis involved importing the transcripts into atlas ti.24. after reading and re-reading the transcripts, the first author proceeded to code the data. this brought about the first round of themes and sub-themes. these themes and subthemes were reviewed by the fourth author, who was also the principal investigator (pi) on the project from which the data for the article stemmed. the pi was asked to review the themes and sub-themes to ensure the accuracy of the data interpretation. the first author revised the analysis where necessary. this brought about the final themes and subthemes presented in the findings section further in the text. ethical considerations an application for full ethical approval was made to the research ethics committee at the human sciences research council and ethics consent was received on the 06 december 2022 [rec 12/23/11/22]. additionally, a second round of approvals was obtained from each provincial department of education, as previously mentioned. all procedures performed with human participants were in accordance with the research committee and with the 1964 helsinki declaration and its later amendments or comparable ethical standards. written informed consent was obtained from all participants. the confidentiality of participants was protected by de-identifying participants’ responses and referring to them by a pseudonym in all future publications associated with the study. results as stated previously in this article, the data from kiis and fgds with participants in the study were categorised according to the following three themes and two subthemes: the first theme outlines the progress made with regard to inclusive education for learners with intellectual disabilities in south african schools. the second theme discusses the shortage of special needs schools as a barrier to inclusive education for learners with intellectual disabilities. the third and final theme, which is divided into two subthemes, describes the lack of physical and human resources as additional barriers towards the successful implementation of inclusive education for learners with intellectual disabilities in south african schools. progress in inclusive education for learners with intellectual disabilities the kiis and fgds revealed progress in terms of inclusive education for learners with intellectual disabilities. this was firstly with regard to adequate financial resources received from the provincial department of education for special needs schools, as highlighted in a kii with a deputy principal and in an fgd with the school management: ‘our special schools get a lot of money from government. so, we get from the department, we get special allocation. so it’s quite a lot of money. i don’t know about the other schools and some of it it’s worked out per head in the special school. so, i don’t know how they work in mainstream schools and everything. so, our support funding will be worked out per learner and from that we can do different things to support the leaner.’ (deputy principal, special needs school, kii 1) ‘i must admit it has increased, dramatically. in terms of resources, i think it’s managed by the school. we have enough funding to be able to buy resources. i don’t think the school was short of resources. we are able to purchase whatever the child needs. and definitely been taken care of. so, it has improved dramatically.’ (special school management, p3, fgd 1) the financial support received from the provincial departments of education also resulted in the modification and improved resource allocation to special needs schools: ‘okay, what i’ve realised is that after the department have made the provision of giving them grants, when we visit the special schools, now they are all the same. they are resource centres, they’ve been modified, some were just having the stairs without the ramps. but as i’m speaking to you right now, we can see that things are happening.’ (senior education specialist 1, district office, kii 2) it is also important to highlight the fact that while the financial support of provincial departments was acknowledged, one special school in this study indicated actively raising funds towards the provision of resources for learners with intellectual disabilities in their schools. this was in the absence of receiving sufficient funding from the provincial department, as illustrated in the excerpt further in the text: ‘our principal and smt are really trying their best and we are really working hard. you know, we host a lot of functions. our teachers do lots of fundraising to get money for resources. we are working hard on that. some of the schools will envy us. they feel we are privileged to have such resources in our school. they ask where we get the money from. we started with nothing. it is our school’s own doing. we always raise funds all by ourselves. we would love if other people can get involved especially the department. we need more assistance from the department.’ (special needs teacher, p3, fgd 1) nevertheless, the interview with the senior education specialist described earlier in the text secondly highlighted progress in terms of the good support received from the provincial department of education in transitioning school institutions into full-service schools: ‘with that one i would say really the department is really on top of everything right now because the director himself at the level of the province, he’s not sending people to go and look for something. if there is something that must be done, and maybe they say they need to transform [name of primary school deleted to protect the identity of the school] primary school into a full-service school, he comes in here. he will just call us to say let’s meet at the school on this date and here is the agenda. then he will come, explain the reason why they need to transform the school and then he will make it a point when he leaves there that relevant stakeholders are involved. he will also make it a point that he gives us the feedback to monitor and maybe even send us a monitoring tool to check the progress. if things are happening, then at the end of the day he will come to say according to the report that i’m having right now, then i can confirm that [name of primary school deleted to protect the identity of the school] is now a full-service school.’ (senior education specialist 1, district office, kii 2) of equal importance, another senior education specialist, who participated in the study reported providing sufficient support to sbsts. this support took the form of support meetings and workshops. these workshops were geared towards capacity-building: ‘yeah, we do. schools that do not have school-based support teams, we workshop them. we do like a workshop; you can even see our strategy under white paper 6. so, we train them about the roles of the school support team and then they’ll elect people who’ll be running the school support team and to indicate whether this team is functional or not functional.’ (senior education specialist 2, district office, kii 3) subsequently, despite two participants outlining gaps in the functioning of sbsts: ‘the sbst is there, but i can only say it’s only functional at a school level but not at a district level. because here at school we have got our sbst team, which is the smt and the support staff, the occupational therapist and the social workers. but if you can check, it’s not enough because we are not getting support from the circuit. we’re not getting support from the district. so, it’s only functional at a school level cause we are the ones who are faced with those challenges. so, we are the ones who has to deal with that.’ (special needs teacher, p2, fgd 4) ‘before i say no, we do not get visits from the department, from the district and wherever. they do not even know what we are doing here. they do not even know what they are supposed to support us with. we are really, i do not know what we, i will just say, but they neglect us. that is how we feel. they expect us to behave like mainstream and treat all the kids as education with no disabilities.’ (special needs teacher, p6, fgd 2) several participants in this study reported well-functioning sbsts – receiving enough support from this team within their respective schools: ‘yes, we do have a functional sbsts very functional one. i think a lot of schools do not have a functional sbsts and that’s also where the support function comes in. i think that was being a big part of the district, getting sbsts to be functional. so, everyone is part of our sbsts. we all have a role in it and we support our learners. we also meet once a week and will talk about new learners that maybe came in battling and we discuss the learners that are maybe starting now with the subject.’ (full-service teacher, p3, fgd 1) lastly, progress was observed through the effective and increased implementation of the sias policy in schools: ‘i won’t speak on behalf of others, but for us, i think, we are doing a very good job. each year, the learners are screened, grade r-one, seven and eight. there is learner identification that is done in the beginning of the year. assessments are also done, and we have got the inclusion of the students. i know all the districts do that and we distribute them separately. the assessment of the identified learners in this area is done.’ (education operations support officer, district office, kii 4) the effective and increased implementation of the sias policy was also reported at the foundation phase. the identifying and profiling of children with disabilities and learning difficulties happened early in the schooling career of learners with intellectual disabilities: ‘as in terms of the white paper 6, the objectives of the implementation of sias in the foundation is ongoing. let me be honest with you, things are happening in the foundation. every now and then when we are having workshops or we are having the meeting. we never ever have such kind of occasion without reminding them about the implementation of sias and reminding them about the adherence to the white paper 6.’ (senior education specialist 1, district office, kii 2) as highlighted in the excerpt earlier in the text and the excerpt further in the text, the successful implementation of the sias policy was linked to increased awareness about the policy, which was argued to transform the inequities characteristic of the education system and led to schools embracing protocols that support differentiated learning: ‘even at our education summits in the district, we make sure that inclusive education is a song that is sung by everyone. even now, we used to receive few concessions from schools located in the informal settlements. concessions were only made by the model c schools but today they know the protocols of concessions and accommodations and very soon this district will be far …’ (senior education specialist 2, district office, kii 3) shortage of special needs schools despite the positive progress reported in the previous theme, participants highlighted the various challenges and gaps impacting on the successful implementation of inclusive education for learners with intellectual disabilities. one such challenge is the shortage of special needs schools, which participants perceived as essential for the implementation of inclusive education for learners with intellectual disabilities in south africa. special needs schools were identified as centres where these learners can receive the support they require: ‘i would say that i’m not a politician. because i think we are only trying to solve this case and i know each and every school will have a small or big school’s support. as i said, we do the screening yearly, so those grades are mentioned but this is the individual support. we want to identify learners because we have such learners in each and every school. so, we still need more schools and schools with special classes. we need more of those because we only have 12 now.’ (education operations support officer, district office, kii 4) ‘our learners are living with several intellectual disabilities in such a way that they do not qualify for mainstream type education, basically, to do the national curriculum statement. they are doing what we call d-caps (differentiated caps). we have aligned it in such a way that it will suit their needs.’ (principal, special needs school, kii 5) at the same time, the principal of a special needs school in the excerpt cited earlier in the text described special needs schools as safe and protective space for learners with intellectual disabilities: ‘the people are labelling them. and that is why if you can check on our children, they enjoy themselves much when they are with us than when they are with their community or with their parents at home. it is because they have realised that at school we get more acceptance and attention than at home. at home they are called names because of their disabilities. so if you can come to our school maybe on monday or immediately after the school open, you will realise the joy on our children. but on friday, or the last day of the term, you will realise that the children are not happy. so, obviously they start thinking to say that where we are going now, we are going to be isolated. some of them, they are locked up in the room.’ (principal, special needs school, kii 5) however, existing special needs schools in the study were described as overcrowded, having long waiting lists and not having the necessary staff to handle the influx of learners: ‘we are overwhelmed in the sense that there is still a long waiting list. we are trying our best. just recently we have built new classrooms. we have started this whole section to be an autism unit. so, the school really tries to do a lot to try and relieve the problems that the department of education is having in terms of space for learners, but still, it is not enough. there are not enough special needs schools. i personally feel they are weakening our schools just by putting more children and more children in because we do not always get more support staff and we try to manage with that.’ (school psychologist, special needs school, kii 6) the overcrowding of special needs schools resulted in the overcrowding of classrooms. in one of the fgds hosted with special needs teachers, one teacher described not being able to provide learners with the necessary attention and support they require because of the size of classes: ‘some schools struggle with overcrowding in classrooms and then there is only one teacher in the class. it is difficult to get to know every single learner properly who is sitting in front of you. then problems are dismissed, if there is a smaller class, you get to know the kids one-on-one and identify certain problems. it is easier to screen a kid, identify and send them to the right school where they can get the necessary help. but we see it only when the kid is already 16 or 17 years old and then they can only come here, it is already too late.’ (special needs teacher, p5, fgd 2) in another fgd with teachers from a full-service school, one teacher expressed concerns about the waiting lists into special needs schools typically resulting in learners with intellectual disabilities having to remain in full-service schools: ‘the waiting list of enrollment starts when you start running special schools and vocational schools. so, we keep them here. they don’t go to another school unless they get placement in [name of school deleted to protect the identity of the school]. our special schools are really overpopulated at this stage. so, we had a few learners here that were autistic that was on the autistic spectrum, nonverbal. and they only got placed at the end of last year, beginning of this year.’ (full-service teacher, p3, fgd 1) this teacher described the full-service school she taught at as overpopulated. as a result, she was unable to provide learners the necessary support they require: ‘i think the amount in a classroom is the biggest challenge for one teacher without an assistant to accommodate 40 learners. and when i say the learners need support, it is not group support. we have learners that cannot read and write. we have learners that is autistic that cannot speak. we have to accommodate them as well. so, in order for it to be more effective, i think with more support for the teachers, less learners in a classroom, it can be effective.’ (full-service teacher, p3, fgd 1) an interview with a school psychologist at a special needs school provided additional insight into the gaps and barriers surrounding special needs schools. this included special needs schools being kilometres away for both learners and their parents: ‘i know about that school, but that is actually the only school that i am aware of and was changed. we know that there must be one in another city. we see many children coming from there to our school. so, there is a big need for our type of school there. this creates massive transport issues to get all those children from there to us here. there are not enough buses. there is a bus waiting list. sometimes the child gets space in a school, but not on the bus, and the parents cannot bring the child to school because they do not have the means to take the child every day to the school. that is a challenge.’ (school psychologist, special needs school, kii 6) the interview with this psychologist also brought to the fore the poor documentation of learner information at schools and a lack of efficiency in the district offices which have been found to further delay learners from gaining access to special needs schools: ‘it must go through the department of education again. so, there is a problem because during this time, the child will be sitting at home. he cannot just go to a new school. we cannot just pick up the phone and say, listen, this child was with us. we will fax or send documents. all these children must go through the district office again to facilitate the placement. there is not enough manpower at the district offices to do these things. some of our children and parents remain for two or three years on those waiting lists before they get placements. so, the whole paperwork thing is also not done effectively. for example, you have hard copies of a file now, someone must scan it and email to someone then at the next school it must be printed out. some of the schools do not always have the resources to trace all those papers. if the file is missing, then there is no way the child’s information will be traced again. so, then it must be started from scratch.’ (school psychologist, special needs school, kii 6) finally, the interview with the school psychologist, alongside other participants in kiis and fgds discussed how parent denial and the stigma associated with special and vocational schools, contributed to learners with intellectual disabilities remaining on waiting lists to enter special needs schools: ‘i think education of parents is a big thing because a lot of the children that do not get placed, it is parents that say no, my child is staying where he or she is. not understanding why, the child needs to move or why it could be best for the child to move. one mom that i know told us she thinks we must put her child in an english class because he was in african school, and he did not do well. no, your child did not do well because he was in an african school. he was diagnosed with severe intellectual disability. he would not have done well in an african or in english mainstream school, so parents’ and community education is quite important.’ (deputy principal, special needs school, kii 1) ‘unfortunately, we do experience parents that are not always involved. parents that do not always understand that this environment is not the best place for their child. and that because of the stigma that vocational schools and special schools have. sometimes, they do not want them to go that route. so, they will progress up until they go to high school. and then you sit with a child that’s 15, 16 that needs to be enrolled in high school and eventually they drop-out.’ (full-service teacher, p3, fgd 1) such action also resulted in parents not exploring suitable pathways of education for learners, which at times resulted in learners commonly dropping out of school, as highlighted in the second excerpt above. lack of physical and human resources in addition to the shortage of special needs schools, participants identified other challenges when implementing inclusive education for learners with intellectual disabilities. this included: (1) physical resources and (2) human resources. physical resources mainstream schools for learners were described as not accessible to learners with physical disabilities. ‘yeah, what we also need is to make space for the physically disabled. because we don’t have enough schools for that. the ramps in the mainstream. the classroom, they need to be accessible, almost all are not accessible for learners with physical disabilities because the townships are struggling. so, we are saying that the facilities there need to be refurbished.’ (education operations support officer, district office, kii 4) similarly, a teacher in the second fgd for special needs teachers, highlighted the shortage of infrastructure for the diverse needs of learners with intellectual disabilities: ‘i think it is very difficult for a school to provide facilities for all the types of disabilities that they have.’ (special needs teacher, p4, fgd 2) moreover, curriculum design was identified as another shortcoming in institutional arrangements for the delivery of inclusive education for learners with intellectual disabilities. the participants further in the text described the curriculum used in their respective schools as burdensome to teachers, and not adapted for the differentiation of all learners’ level of intellect: ‘the content is too much. the assessment is too much as well. there is so much pressure on the teachers that sometimes you are also busy with administration that you do not always have time to do the proper teaching and these kids are hands on hands.’ (special school management, p4, fgd 2) ‘yes, they do. the only thing available is just the curriculum for the little ones in foundation phase. they definitely do get support, but the curriculum is so difficult for our children, and it is mostly more appropriate for mainstream children. most of the children in my class, struggle extremely with the curriculum and then there are children who cannot do it at all so, i think we do get support but where more support is needed is for the curriculum adaptation and the differentiation for all the children’s level of intellect.’ (teacher 1, special needs school, kii 7) this participant in the first excerpt, alongside other participants in the study, reported not receiving the necessary training and support from the department of education to effectively implement the curriculum: ‘we send letters every year to the department because we are struggling with the curriculum because it is not fit for our children, and they do nothing. teachers are alone. there is no help, no support. if we don’t figure it out for yourself, we are not going to make it. the teachers from other schools come here all the time because they do not know what to do. they want us to train them, but then the department has got people that supposed to train them.’ (special school management, p4, fgd 2) ‘we never get any curriculum advisors that visit our special school neighborhood. we only see our circuit manager; he comes regularly, and he is very supportive. we are now drafting number five for the profound curriculum. it is ridiculous. we had one training, so in five years. i think we are the only school actually who successfully running the profound curriculum.’ (special school management, p4, fgd 2) furthermore, one teacher in this study expressed concern about the inadequacy of programmes in special needs schools to provide learners with intellectual disabilities with the necessary skills to enter the labour market: ‘what is going to happen to those children after school? what support do they get after leaving school? like after school programmes to get jobs. it is actually so hard but most of the times the children, when they leave school, there are small programmes but not all the children can do it. then what happens to those children, especially if their parents die, not being able to take care of themselves? so, i think they do get support from the district, but it is more for when they leave school, what happens to those children?’ (teacher 2, special needs school, kii 8) adding to the discussion earlier in the text, a principal in this study critiqued the white paper 6 for not providing learners with intellectual disabilities with formal certification when exiting the school system. the school where this principal is based seeks to provide learners with intellectual disabilities with vocational skills. however, as shown in the quote further in the text, these vocational skills are not recognised in the labour market without relevant accreditation. this was argued to often lead to unemployment among learners with intellectual disabilities: ‘for instance, there are those who are doing the car wash. when they leave here, they go and do the car wash. there are those who are doing manicure and pedicure. the nails, the hair dressing and whatever. so, at least when they leave school, they can be able to go and open their salon. and be able to get a living out of it. but when they leave schools, they will only be having a portfolio. we are still struggling with the white paper 6 on sita. because we are hoping that sita maybe one day might come and accredit the skills that these learners are doing. but they do not have any certificate. so how are they going to get employed?’ (principal, special needs school, kii 5) ‘so, if that work can be taken to maybe sita and whatever to say that let us accredit this. but for now, when they go to any company around to say that we are looking for a job, they want the certificate. they want the paper. the paper is not there. but we know very well that if we can give that child an opportunity, he will perform.’ (principal, special needs school, kii 5) the principal called on the sita to accredit the vocational skills of learners with intellectual disabilities so that they can obtain employment. human resources the shortage of school psychologists was recognised as another challenge for inclusive education involving learners with disabilities: ‘i think they need more psychologists at school level to do the assessments for that particular school, so that it doesn’t have backlogs. because if you’ve got more people, if every special school has one or two psychologists, you could do bulk of the assessment, instead of having maybe five psychologists dealing with 50 schools, and having to get through that big caseload.’ (special school management, p5, fgd 3) the participant above called for the employment of more school psychologists. he explained how the lack of school psychologists had resulted in the delayed assessment of learners with intellectual disabilities. in a similar vein, participants highlighted a shortage of caregivers for learners with severe intellectual disabilities in the classroom: ‘i think it’s finance because like i was saying, the policies say that they will have support staff, when they have more learners with disability. there are many learners that are using pampers, others are on wheelchairs. so, it is difficult to accommodate them when they don’t have teachers. the teachers there is only one in the classroom. the learners in the wheelchair, you need somebody who will help them to go to the toilet. if they had the caregiver, they could assist.’ (senior education specialist 2, district office, kii 3) ‘they cannot dress and undress themselves. the school appointed a few ladies to work as caregivers. for me, this is something that the department of education needs to look into. there must be specific posts established for them because now they work on yearly contracts and their salaries are low. we depend on them. i think there must be specific posts for those types of services. i really think the department is in a way neglecting that. some of our learners intellectually, they are low functioning, they need someone that can take care of them.’ (school psychologist, special needs school, kii 6) the participants in the second excerpt accordingly called provincial departments to provide permanent employment for caregivers to provide adequate support and care for learners with severe intellectual disabilities in the classroom. furthermore, although participants have acknowledged progress in the training of teachers in special needs education, they highlighted gaps in the practical experience in the tertiary education of teachers: ‘so, i feel in theory, it is easier for us because we know this is what a special needs child is, but i do feel we need to get more practice, more physical practice. many a times what happens is you get training, online training, everything from the government, which is nice and then you acquire the knowledge but then you go into class and put that knowledge into practice is difficult. so, i think if we can get opportunities where we can go to other special needs schools, see what their teachers are doing, how they differ from us, and they also come to us then we can learn from each other. i think that would be much easier and better and also because sometimes as a special needs educator you do feel that you are not always doing exactly what you should be doing, and you are not sure if you are fulfilling the needs of the learners. so, if you can go to other places, you will see that you are actually doing a good job and it motivates you.’ (teacher 2, special needs school, kii 8) ‘it is not like 100% everyone has the skill. with the children, you must have patience and people are not the same. there are those who are harsh and those who are quick to take action and stuff like that. but with this kind of learners, you must really have patience and be compassionate because conflicts are always there.’ (teacher 3, special needs school, kii 9) in the fourth focus group with management, one participant additionally highlighted the shortage of teachers to teach practical subjects: ‘we do not have technical teachers. not having technical teachers is a huge problem. they do not want to appoint them. they do not have proper education degrees. yeah, but they are on the technical side. teachers must be appointed and work in school. we do not have teachers that can teach practical subjects, technical subjects.’ (special school management, p1, fgd 4) discussion guided by findings from the empirical evidence (outlined in the preceding section), a toc was developed to provide conceptual guidance for future toc-driven implementation of the ewp6 for learners with intellectual disabilities in south africa. according to de silva et al. (2014) and wu et al. (2024), a toc-driven implementation process strengthens the development of interventions by providing a framework for enhanced stakeholder engagement and explicitly designing policies or programmes that are embedded in the local context. a toc also improves strategic planning or programme and policy planning and evaluation of interventions through a comprehensive set of indicators to evaluate various causal pathway stages through which an intervention achieves impact (hiltensperger et al. 2024; rogers 2014). figure 1-a1 in appendix 1 outlines the toc towards the future implementation of the ewp6 for learners with intellectual disabilities in south africa. the resultant toc makes several key assumptions for successful implementation of ewp6 for learners with intellectual disabilities. according to mayne (2023), assumptions in a toc are the causal connections, events and conditions that need to be realised for the intervention to work. they consider the context in which an intervention operates (vanderkruik & mcpherson 2017). the key assumptions for the effective implementation of the ewp6 for learners with intellectual disabilities in south africa, include the need to incorporate objectives of the united nations convention on the rights of persons with disabilities, the continental plan of action for the african decade of persons with disabilities and the 2030 agenda for sustainable development. these provide the global framework, and benchmarks to define the implementation process. similarly, another assumption is that the implementation of the ewp6 for learners with intellectual disabilities should be guided by the vision and objectives of the national development plan 2030 in south africa. this involves the mobilising of public (civil society) support for the implementation process for enhancing social accountability and the promotion of non-discrimination and democracy. there is also a need for political commitment, the buy-in by all relevant stakeholders (every public representative and public servant [across all three spheres of government], all state institutions promoting democracy, all regulatory bodies, legislatures, the private sector and the non-governmental sector) and the consolidation of gains from 2001 to 2021 progress in the implementation of inclusive education policy for learners with intellectual disabilities. in addition, the toc-driven implementation process should be guided by an ‘ubuntu world-view, a rights-based, social justice agenda with the embedded goal of promoting access, participation, and equity for all learners, and resisting all kinds of oppression, marginalisation, and discrimination’ (muthukrishna & engelbrecht 2022:66). a toc is made up of a results chain. the results chain of the toc includes inputs and resources, activities, change pathways, short-medium term outputs and outcomes and the envisaged impacts. the united states agency for international development (2016) defines a results chain as: [a] type of logic model that displays the relationships between what a programme intends to do and the changes and results it hopes to accomplish to achieve its programme purpose. (p. 9) through a sequence of anticipated intermediate outcomes, it illustrates the presumptive causal relationship between an intervention and desired impacts (foundations of success 2009; hiltensperger et al. 2024; wu et al. 2024). results chains are important in clearly specifying assumptions behind an action and positioning implementors to develop relevant objectives and indicators to monitor and evaluate whether actions contribute to the intended impact (margoluis et al. 2013; salzano & perrier 2024). according to zwart (2017) and salzano and perrier (2024), result chains provide a framework for results-based management through linking results to goals, ensuring results-based management approaches are fit for purpose and linking results and performance information for better delivery. the inputs and resources for the effective implementation of the ewp6 for learners with intellectual disabilities are categorised into policy, operational and educational resources. the key policy inputs include the south african constitution, guidelines from the white paper on the rights of persons with disabilities, united nations convention on the rights of persons with disabilities, protocol to the african charter on human and people’s rights on the rights of persons with disabilities in africa, sustainable development goals, medium term strategic framework, the south african schools act (1996), the higher education act (1997), the further education and training act (1998) and the adult basic education and training act (2000). the ewp6 has not been reviewed since the committee on the rights of persons with disabilities issued the general comment 4 to uphold inclusive education that emphasises participation of children with disabilities in mainstream education as a fundamental human right of all learners (united nations convention on the rights of persons with disabilities section 10a). the above provides the fundamental policy and legislative frameworks for the effective implementation of the ewp6 for learners with intellectual disabilities. operational inputs include professional support structures and processes; administrative support, support channels between the department of education and schools, providing teacher assistance in full-service schools, and norms and standards to strengthen the education system, among others. other inputs highlighted in kiis and fdgs include support to sbsts (e.g. through capacity building workshops), resources for screening learners and human resources (including caregivers, technical teachers and school psychologists). educational resources include differentiated curriculum, assessment and quality assurance; and learning programmes for children with severe to profound intellectual disabilities. the gap in the training of special needs teachers (as highlighted in the kiis) additionally emphasises the need for relevant training and workshops to support special needs teachers including on learning programmes for severe to profound intellectual disabilities; and incentives for improving teacher qualifications (b.ed. degree) and continuous training. these three categories of inputs and resources feed into complementary activities and change pathways. these are: (1) effective policy implementation; (2) institutional co-ordination and support; and (3) educational resources support. with regards to effective policy implementation, key activities and change pathways include a continual disability-inclusive approach to policy implementation, actively implementing south africa’s new disability rights policies; establishing mechanisms for the early identification of learning difficulties using the sias policy; provide a quality and relevant learning experience for learners with intellectual disabilities in special needs schools; and offering education as a non-racial and integrated component of the education system. additionally, focus will be placed on improving and designing of education structures, systems and learning methodologies aimed at adequately addressing and responding to the diverse needs of learners with intellectual disabilities. the kiis and fgds also highlighted the need to improve awareness of policies to enhance institutionalisation in schools. the activities and change pathways under institutional coordination and support include: providing the provincial education departments with the necessary capacity to manage inclusive education for learners with intellectual disabilities. it will also include the professional and administrative support within and between institutional structures; the establishment of district-based support teams (dbsts) to provide co-ordinated professional support services; the establishing and capacitating of sbsts; and providing transversal outreach services to care centres and special needs schools for learners with severe to profound intellectual disabilities. in light of the shortage of special needs schools (as outlined in the kiis and fgds), concerted efforts should be made to build more special needs schools to counter long waiting lists and to ensure learners with intellectual disabilities obtain the support they require. the findings of the study showed that special needs schools are often long distances from families. echoing the sentiment of muthukrishna and engelbrecht (2022), there is a need for the building of small special needs schools as part of local community schools to make it more accessible to families and local communities. special needs schools, in an incremental manner, should also form part of district support by becoming resources for all schools. focus will further be placed on acknowledging the central role played by educators and parents; the development of investment plans to improve the quality of inclusive education for learners with intellectual disabilities; and the introduction of a skills and vocational learning programme and accredited exit level qualification other than the national senior certificate. in a similar vein, there will be the mobilising of out-of-school programmes for children and youth with disabilities of school-going age for the uptake of inclusive education. these actions seek to address the unemployment crisis presently affecting learners with intellectual disabilities, as highlighted in the kiis of the study. under educational resources support, key activities and change pathways include: supporting teachers with resources, skills and knowledge to provide quality inclusive education for learners with intellectual disabilities. this includes developing professional capacity of all educators in curriculum development and assessment, for example, curriculum differentiation. it further involves the general orientation and introduction of management and governing; and incorporating bodies and professional staff to the inclusion model. the activities and change pathways will lead to short medium-term outputs and outcomes. these include an expanded targeted community outreach programme from the base of government’s rural and urban development nodes to mobilise out-of-school programmes for children and youth with intellectual disabilities; increased number of special schools or resource centres, full-service schools and dbsts. moreover, the activities and change pathways would also improve school attendance and lower drop-out rates; transition special needs schools into resource centres and mainstream schools into full-service schools that can enrol learners with mild to moderate intellectual disabilities. despite data not being collected from mainstream schools, mainstream schools are an essential part of the implementation of inclusive education for learners with intellectual disabilities. therefore, another outcome is that mainstream schools are being equipped to adequately assist children and youth with intellectual disabilities and not just placing children with intellectual disabilities in mainstream schools. it is important that participation of all learners with intellectual disabilities is maximised in the culture and the curriculum of educational institutions. likewise, there needs to be an uncovering and minimising of barriers to learning; a change in attitudes, behaviour, teaching methods, curricula, and environment to meet the needs of all learners with intellectual disabilities in south africa. five major impacts are envisaged from the toc-driven implementation of ewp6 for learners with intellectual disabilities in south africa. these are: (1) children and youth with intellectual disabilities receive inclusive, equal, and quality education; (2) inclusive education and training for children and youth with intellectual disabilities provided in mainstream schools; (3) access to appropriate, multi-disciplinary education support services for children and youth with intellectual disabilities; (4) government to provide access to education to learners with intellectual disabilities, all other disabilities, and those who encounter various barriers to learning, which includes behavioural, social, economic, language, class or other barriers through inclusive education and training in mainstream schools; and (5) establishment of an inclusive education and training system aimed at adequately addressing barriers and accommodating learners with intellectual disabilities. conclusion south africa’s policy on inclusive education was implemented from 2001. although this implementation process achieved several milestones in the form of structural, process, institutional arrangements and curriculum changes, challenges remain in the implementation of the policy for learners with intellectual disabilities. such challenges include lack of special needs schools, inadequate curriculum design and lack of resources (both physical and human resources) to support learners with intellectual disabilities. this research attributed such implementation failure to the lack of an explicit toc. this research developed a toc to provide a conceptual view for the implementation of the policy for learners with intellectual disabilities. the toc outlines five key envisaged impacts and defines the results chain with explicit inputs and resources, activities, change pathways, short-medium term outputs and outcomes. the inputs and resources are categorised into policy, operational and educational resources. these feed into complementary activities and change pathways (effective policy implementation, institutional co-ordination and support and educational resources support). the toc will allow identification of potential risks and challenges associated with the policy implementation process and allow development of mitigation measures. it will further provide a framework for measuring and evaluating the impact of the policy implementation process. while this toc presents a key step in rationalising the policy implementation process, it needs to be verified by key stakeholders to ensure stakeholder buy-in. in addition, there is a need to develop relevant institutional arrangements, operational modalities and matrices (including monitoring and evaluation frameworks) to ensure effective implementation of the policy for learners with intellectual disabilities through a toc driven process. beyond learners with intellectual disabilities, the continued development of theories of change is strongly encouraged to guide the effective implementation of inclusive education for learners with other disabilities in south african schools. learners with disabilities, in south africa, should have access to quality education, and also an education system that effectively promotes and responds to their individual needs and rights. acknowledgements the authors would like to acknowledge the contribution and time of all the study participants in the department of education and schools in the selected districts in gauteng, limpopo and mpumalanga provinces. the authors would also like to thank dimpho makitla, clement nchabeleng, tanja gordon, fanelesibonge masinga and sthando nkosi for their assistance with data collection at the respective sites. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions d.i. led the overall writing of the article, was involved in the conceptualising and writing up of the introduction, methodology, discussion and conclusion. d.i. further contributed to the visualisation of the theory of change, coded and analysed the data, and wrote-up the results section. p.t. was involved in the conceptualising and contributed to the development, writing-up, and visualisation of the theory of change, and contributed to the write-up of the discussion and conclusion, and reviewed the overall article. t.m.r. contributed to the conceptualisation and the writing of the introduction, the theory of change, and methodology, and reviewed the overall article. m.m. was involved in the conceptualising, contributed to the writing of the introduction, methodology, and reviewed the analysis and the overall article. n.m. contributed to the conceptualisation and the write-up of the introduction and methodology. funding information funding was received form the department of women, youth, and persons with disabilities (project code tvaqaa). data availability data of the study belong to the department of women, youth, and persons with disabilities, but permission can be requested from the human sciences research council. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references clark, h., 2021, theory of change in a nutshell, 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and governance, discipline of information systems and technology, university of kwazulu-natal, south africa citation pudaruth, s., gunputh, r.p. & singh, u.g., 2017, ‘forgotten, excluded or included? students with disabilities: a case study at the university of mauritius’, african journal of disability 6(0), a359. https://doi.org/10.4102/ajod.v6i0.359 original research forgotten, excluded or included? students with disabilities: a case study at the university of mauritius sameerchand pudaruth, rajendra p. gunputh, upasana g. singh received: 15 dec. 2016; accepted: 29 may 2017; published: 29 aug. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: students with disabilities in the tertiary education sector are more than a just a phenomenon, they are a reality. in general, little attention is devoted to their needs despite the fact that they need more care and attention. objectives: this paper, through a case study at the university of mauritius, sought to answer some pertinent questions regarding students with disabilities. does the university of mauritius have sufficient facilities to support these students? are students aware of existing facilities? what additional structures need to be put in place so that students with any form of disability are neither victimised, nor their education undermined? are there any local laws about students with disabilities in higher education? method: to answer these questions and others, an online questionnaire was sent to 500 students and the responses were then analysed and discussed. the response rate was 24.4% which showed that students were not reticent to participate in this study. results: our survey revealed that most students were not aware of existing facilities and were often neglected in terms of supporting structures and resources. ict facilities were found to be the best support that is provided at the university of mauritius. the right legal framework for tertiary education was also missing. conclusion: ideally, students with disabilities should have access to special facilities to facilitate their learning experiences at tertiary institutions. awareness about existing facilities must also be raised in order to offer equal opportunities to them and to enable a seamless inclusion. introduction according to the 2011 population census, there are 59 868 people with disabilities in the republic of mauritius, which corresponds to a disability prevalence rate of about 5% (statistics mauritius 2015). although this is lower than the global disability prevalence rate (who 2011), the republic of mauritius has been implementing laws and policies for the well-being of people with disabilities since 1976 with the promulgation of the national pensions act 1976 (supreme court 2017). the republic of mauritius signed the united nations convention on the rights of persons with disabilities (uncrpd) in 2007 and ratified it in 2010 although certain reservations were made in relation to articles 9.2(d), 9.2(e), 11 and 24.2(b) (untc 2017). article 24 of the uncrpd stipulates that all member states shall ensure that people with disabilities should be given equal opportunities to follow tertiary education (uncrpd 2006). article 28 of the united nations convention on the rights of the child also guarantees the right to a free primary education (ohchr 2016). according to the world disability report (who 2011), there are about 1 billion people in this world who have some form of disability. for example, in malawi, more than 97% of children with disabilities do not have access to education (chilemba 2013). despite the fact that many countries, including mauritius, have signed and ratified the uncrpd, most of them, have failed in their obligations to conceptualise and implement the right to education for students with disabilities as envisaged by the international conceptual approaches and legal standards of inclusive standard in the uncrpd. the uncrpd defines a disability as a long-term physical, mental, intellectual or sensory impairment, which may hinder a person’s full and effective participation in society on an equal basis with others. persons with disabilities are often the subject of severe social stigma, discrimination and harassment which consequently force them to live under the misguided belief that their lives are shameful and not worthy of respect (peltzer 2014; waterstone & stein 2008). this has resulted in the creation of a culture of marginalisation and routine discrimination, in a society which is already on the downfall, especially in developing countries where children with disabilities do not have access to education. poverty, unemployment and social tensions (civil wars, discrimination) also account for this. therefore, there is an uncontested connection between poverty and disability (degener 2017; rubey 2002; schneider, mokomane & graham 2016). because of political or social reasons, some countries are even more affected than others, in terms of equal rights and equal opportunities, with adverse affects education. the uncrpd has played an important role in the improvement of the dignity of all persons with disabilities, but there are many challenges ahead in terms of its implementation at the national level. some legislations such as the mental health care act 1998 (act 24/1998), the hiv/aids act 2006 (act 31/206) and mauritius mental health association act 1974 (act 8/19740) are indirectly involved in the protection of persons with disabilities, to allow these citizens to enjoy their rights, on an equal footing with others. the training and employment of disabled persons act 1996, the national council for life rehabilitation of disabled persons act 1986, the society for the welfare of the deaf act 1968, the lois lagesse trust fund act 1983, the child protection act 1994, the ombudsperson for children act 2003 and the unemployment hardship relief act 1983 are some of the legislations which have been promulgated to help, protect and promote a more inclusive life for disabled persons in mauritius. all the above-mentioned legislations are available from the supreme court of the republic of mauritius (supreme court 2017). the primary aim of this research is to report on students’ perceptions regarding support structures available to students with disabilities in the hope that this will encourage states and tertiary education institutions to implement policies and measures to support the education of students with disabilities, based on the findings of this study. this research aims at increasing the awareness about the facilities that exist in tertiary institutions for students with disabilities at the university of mauritius. through this study, the researchers hope to ensure that these students are not overlooked in tertiary education, and also make a recommendation for the adoption of e-learning as a possible solution to integrate students with disabilities into the mainstream tertiary education. in the same vein, this paper attempts to encourage tertiary institutions to provide facilities and support structures to enable students with disabilities to enjoy the same benefits on campus as mainstream students, thus providing them equal rights and opportunities for education. after an introduction, the structure of this paper follows a traditional pattern. a brief review of related literature is discussed in the next section, before the research methodology adopted in this study is described. the findings of this study are then presented. this empirical paper ends with a conclusion and a brief presentation of the limitations of this study. finally, the list of cited references is provided. literature review georgeson, mamas and swain (2015) define a disabled student as ‘any student who has a sensory, cognitive, physical or psychological impairment’. the white paper on education (in south africa) defines a person with a disability as ‘a person limited or impaired in one or more functional activities which prevents full and equal academic, social and economic participation’ (ukzn 2004). the impairment may be permanent, recurring or transitory and may be sensory, physical, cognitive or psychological (ukzn 2004). there is a general increase in the number of students with disabilities entering higher education in developed countries (ahead 2015; altbach, reisberg & rumbley 2009; nces 2016). especially when distance education institutions understood the special needs of students with disabilities, they began to develop support systems that assisted these students by providing materials using alternative forms of media, and by adopting enabling technologies (kirkup 2015). the open university of japan (ouj) provides support for students with disabilities by allowing them to study from home. this includes adopting special arrangements for examinations and classroom-based activities, extensive use of radio and tv for lecture transmission; providing transcripts and captions for all learning materials and making texts available in digital form for screen reader users (cooper 2015). however, despite this increase in e-learning facilities, students with disabilities continue to display lower retention rates when compared to mainstream students (lichiello 2012; ncld 2014). this lower retention rate may be because of institutional barriers. georgeson et al. (2015) outline that disabled university students face many challenges, which may include a lack of suitable facilities, struggles to access learning materials, a lack of understanding and respect from both fellow students and academics, to name a few. in a study in the united kingdom, it was found that the issues faced by students with disabilities were exacerbated by the lack of a coordinated effort, across the institution, to address these special needs (cooper 2015). furthermore, locally, in africa, van jaarsveldt and ndeya-ndereya (2015) identified technological barriers, a lack of awareness and poor liaison among the institutional stakeholders and lecturers who distanced themselves from the responsibility of providing learner support to students with disabilities as the challenges that students with disabilities faced. research has shown that students with disabilities feel they have to work harder than other students, because they have to manage a double workload – their disability and their studies (gorman 1999). uncaptioned videos, disorganised websites and course materials that cannot be read by screen readers, or accessed without a mouse, and educators who have little knowledge of how to ensure that their courses are accessible compound the difficulties faced by students with disabilities (cooper 2015). the introduction of relevant technologies can provide support to them in their learning. often it is thought that technology can help to reduce the barriers to equitable education for students with disabilities and thus promote better integration of students with disabilities into mainstream higher education (ahmad 2015; dfid 2015). data collected from students with disabilities in a uk higher education institution showed that students with disabilities lack the correct digital capital to enable them to succeed within higher education environments. thus, it is important for higher education institutions to ‘conceptualise’ and ‘organise’ technology-related support services for students with disabilities, to support and promote access to equitable educational experiences and outcomes (georgeson et al. 2015). the adoption of digital technologies, such as virtual learning environments and e-learning, can help to achieve increased levels of accessibility and inclusion (douce 2015). however, simply adopting these technologies does not ensure ‘accessibility’. educators or administrators have to make sure that these relatively new digital tools are indeed accessible to all. the solution maybe lies in using standard design principles which are universally accepted. when creating e-learning materials for students with disabilities, learning materials must cater for all four major disability categories: visual, hearing, motor and cognitive impairments. the emphasis of universal design is on social inclusion while accessibility focuses on the implementation of specific features and processes. thus, this inclusive nature of universal design and accessibility can greatly enhance the interaction of students with disabilities with e-learning (van rooij & zirkle 2016). it is essential that the developers of the e-learning environment, aiming to integrate accessibility into the e-learning environment, familiarise themselves with both the capabilities and limitations of the institution’s technology, early in the development process, to minimise the repetitive nature of having to re-design elements that cannot be supported by the current infrastructure. adopting a learner-centred approach may require academics to adapt their educational practices to enhance learning for all students, to include disabled students. the design and implementation of e-learning spaces and learning materials that are accessible to all students can be accomplished by providing multiple means of representation, action and expression, as well as engagement, which meet recognised design principles. successful e-learning environments that support students with disabilities are flexible and robust enough to afford opportunities to students with disabilities to enter inclusive education settings, without being marginalised (van jaarsveldt & ndeya-ndereya 2015). ultimately, technology provides unique opportunities to assist students with disabilities to learn more easily. the key to achieve this though is to develop e-learning environments that make their learning processes interactive, accessible and inclusive (yahya et al. 2015). the transition from paper-based to digital and eventually to web-based learning has brought with it new uses of technology to support students with disabilities, as well as challenges for these students (kirkup 2015). although e-learning enhances the availability of access to content material, the full potential of this benefit can only be realised if the student has access to the appropriate assistive technologies (at). as georgeson et al. (2015) explain, students with disabilities obtain more meaningful learning experiences if they have access to at like alternative interfaces (e.g. screen readers), reading tools (e.g. text-to-speech), recording tools (e.g. voice recording), writing tools (e.g. word prediction), planning tools (e.g. mind-mapping software) and communication tools (e.g. synthetic speech). inaccessible design of e-learning portals can be a barrier to students with disabilities. thus, technology is a ‘double-edged sword’ and if students with disabilities are exposed to poorly designed e-learning environments in higher education, they will be on the ‘wrong side of a second digital divide’. to improve the adoption of e-learning, academics are urged to improve their practices and support for the use of at. this also includes empowering students with disabilities to be more active users of technology and assisting them in making more informed decisions about the benefits of actively engaging with technology to enhance their learning processes. furthermore, to improve the experiences of students with disabilities in higher education institutions, it is imperative that we listen to their voices, which provide us with information on the challenges they face while being learners at these institutions. the aspect of sharing good practices should not be neglected either, as case studies represent a powerful approach to help to learn from academics’ experiences, thus increasing ‘the volume of important voices’ (douce 2015). as cooper (2015) states, there is a need for ‘formal research that documents the experiences of academics with disability students in online learning’. more strategies need to be explored to address the complex issues of access and inclusion. the creation of an inclusive learning environment at higher education institutions will remain elusive if academics distance themselves from providing learner support to students with disabilities. merely transferring the responsibilities to support services, such as the unit for students with disabilities, at the institution will frustrate the learning of these students (van jaarsveldt & ndeya-ndereya 2015). in japan, the united kingdom and the united states, the law is seen very much as a driver for change (cooper 2015), forcing higher education institutions to implement facilities to support students with disabilities. however, it must be stressed that abiding by the law alone will not affect a dramatic change. a greater participation of all stakeholders in higher education is required to ensure that students with disabilities become a part of the mainstream students in higher education institutions. as van jaarsveldt and ndeya-ndereya (2015) have stated, ‘beyond legislation and institutional policies relating to students with disabilities, academics should accept responsibility for and have an understanding of accessibility and the establishment of inclusive learning environments’. it is thus imperative to expand our research to identify methods, which can empower students with disabilities, and provide them with deeper and more enriched learning experiences. in south africa, inclusive education was implemented following the introduction of the higher education act of 1997 (council on higher education 1997) and the national plan for higher education in 2001 (ministry of education 2001). the education white paper 6 on special needs education (2001) outlines the inclusion of students with disabilities in broad terms and specifically mentions that higher education institutions are required to draft their own institutional plans to support students with disabilities (department of education 2001). these institutional plans must include the strategies and steps that will be taken by the institution to implement the guidelines provided by the legislation. more recently, the department of higher education and training in south africa approved the white paper for post-school education and training which aims to produce a single, coordinated post-school education and training system (dhet 2013). many south african universities have established specialised disability units, to facilitate and coordinate specific support services for students with disabilities (ukzn 2004). these services may include sign language interpretation, braille services, infrastructure, equipment and software installation, to facilitate easier learning (van jaarsveldt & ndeya-ndereya 2015). these units have also created institutional policies to help support their processes. these institutional policies aim to provide current and prospective students and staff who have disabilities with the opportunity for full participation at the universities of their choice. for these policies to be successfully implemented, they should be reviewed on a regular basis in consultation with people with disabilities to allow them to make input into improvements required to make their opportunity for full participation in university life possible (hall & healey 2004). despite the reservations made in the uncrpd, the republic of mauritius has a number of domestic laws for the protection and inclusion of people with disabilities or special needs in mainstream life. in 2008, the equal opportunities act was enacted to prevent all kinds of discrimination based on disability (supreme court 2017). the building control act 2013 ensures that all new public buildings and infrastructures are accessible to people with disabilities (supreme court 2017). the training and employment of disabled persons act requires that all employers having 35 or more staff should employ at least 3% people with disabilities. a number of public bodies such as the disability empowerment unit, the national council for the rehabilitation of disabled persons and the training and employment of disabled person board have been set up to carry out government policies based on domestic laws and the recommendation of the uncrpd. people with disabilities who are victims of discrimination can seek redress directly not only from the police or the office of public prosecutions but also from the equal opportunity tribunal, national human rights commission, the office of the ombudsman, the office of the attorney general and the committee on economic, social and cultural rights (mssnsri 2016; statistics mauritius 2015). depending on the severity of their disability and their age, people with disabilities also receive a pension every month. thus, we can see that in general, there exist sufficient laws in the republic of mauritius, which have been put in place for the well-being of people with disabilities. although the republic of mauritius currently does not have any statutes specifically for the education of people with disabilities, it has been doing a lot for promoting inclusive education despite the uncrpd reservation made on article 24.2(b). the special education needs and inclusive education (sen & ie) policy and strategy (moehr 2006) states that: ‘an inclusive educational system, starting in the early years of development, and aimed at responding to the educational needs of each student through a child-centred pedagogical approach and a flexible and adapted curriculum will help each child of mauritius develop his/her full potential.’ (p. 5) currently, in mauritius, many students with disabilities attend specialised schools but the government is working towards the goal of total inclusion (moehr 2006). students with disabilities are offered free transport by the government. laws and regulations have been amended to make the school environments more accessible. many nongovernmental ogranisations like the global rainbow foundation (grf 2016) help students with disabilities in the acquisition of assistive devices for walking, hearing, talking, sight, etc., so that they can be included in mainstream education. in terms of tertiary institutions, to our knowledge, out of 10 publicly funded institutions and 53 private ones (tec 2017), only the university of mauritius has so far produced formal regulations with regard to the facilities that are available to students with disabilities (university of mauritius 2016). the other universities, colleges and schools provide tailored support on a case-by-case basis. in the past few years, the ministry of education (moehrtesr 2016) has been giving scholarships to students with disabilities who wish to study at a local public university. research design and methodology an online self-administered or self-completion questionnaire (appendix 1), which included a mixture of open-ended and closed questions, was used for the data collection process. this questionnaire was benchmarked against similar studies undertaken internationally (dent et al. 2015; healey et al. 2015; meyer et al. 2012; roualdes 2013). the primary data collected were derived from the anonymous responses received to the online questionnaire. the questionnaire focused on gathering information on the general awareness of students regarding students with disabilities, the perceived views of students about the support structures available to students with disabilities, the awareness of laws by students to support students with disabilities, the obstacles students with any form of disability are facing in tertiary and higher education and the role of e-learning in providing a more supportive learning environment for students with disabilities. the population for this study was students at the university of mauritius. the questionnaire was electronically distributed through the use of google forms to 500 students, which included those with disabilities. the sample selected adopted a combination of convenience and purposive sampling. convenience, as the students were available for participation at the university, and purposive, because it focused solely on the university of mauritius. no exclusion criteria were adopted in this process. post-data collection, the quantitative responses were analysed using simple data analysis techniques, while the qualitative data were extracted into themes for discussion. responses are reported with an r, indicating a respondent in the discussion of the findings. therefore, this article attempts to reflect a better understanding of this phenomenon, and thus enable more effective measures against it, in the mauritian context, to provide better facilities and encourage students with disabilities to adapt and succeed in tertiary education. ethical considerations ethical clearance procedures were completed. participants were informed of the voluntary nature of the survey, the anonymity of their responses and the purpose of the survey. findings and results as presented earlier, the questionnaire was distributed to 500 students, which represents about 4% of the total student population of the university of mauritius. a total of 122 responses, which represents a response rate of 24.4%, were received in total, with 6 responses from students with disabilities. overview of students with disabilities figure 1 represents an overview of the students with disabilities in this study. for the 2015–2016 academic years, there were 52 students (0.4% of the student population) who declared that they have some form of disability or an other. about 27% of these 52 students have mobility problems (hand, leg or other parts of the body), about 21% have visual problems, 11% have hearing problems, another 12% have asthma problems and the rest have other medical problems such as diabetes, stammering, difficulty to concentrate and other rare or complex conditions. this information was received from the university of mauritius. figure 1: types of disabilities among students of the university of mauritius. the questionnaire was distributed in such a way so as to get students from different levels of study at the university of mauritius. figure 2 shows the demographics of participants including undergraduates (81.1%), postgraduates (16.4%), alumni (0.01%), graduates (0.01%) and unspecified (0.01%). thus, the overwhelming majority of students were undergraduates while a few who responded to the invitations were no longer students of the university. out of the 122 respondents, 54 (44.3%) participants were male students and 68 (55.7%) were female students. figure 2: level of study of the participants. figure 3 represents the age distribution of the participants. most participants were younger students. participants who were 20 and under totalled 81 (66.4%), 39 (32%) were between 21 and 30 years, while just 2 (1.6%) were older learners who were between 31 and 45 years of age. there were 99 (81.1%) participants who were full-time students, 12 were part-timers (9.8%), 9 (0.07%) participants identified themselves as both full-time and part-time students and 2 (0.02%) were distance learning students. figure 3: age distribution of participants. awareness levels and support structures following the demographic data collection, the next part of the questionnaire gathered information about the respondents’ awareness levels of students with disabilities. it also gathered their views on the current support structures available for students with disabilities. nineteen (15.6%) students indicated that they have a close relative or friend who had or has some form of disability, which impacted on their ability to study at a tertiary institution. furthermore, 81 (66.4%) respondents affirmed that they are aware that there are students with disabilities at the university. despite being aware of the fact that there are students with disabilities at the university of mauritius, 80 respondents (65.6%) mentioned that they were unaware of the amount of funds that are injected by the university of mauritius in order to provide the necessary facilities and support structures for students with disabilities. one hundred and three (84.4%) respondents stated that they felt public and private tertiary institutions in mauritius are ill-equipped to provide these facilities. figure 4 summarises the respondents’ views on the support provided by the university of mauritius for students with disabilities, in terms of it, library facilities, general accessibility, sports and recreational facilities and departmental facilities. all facilities were consistently rated by the majority of the respondents as either ‘poor’ or ‘very poor’. general accessibility was ranked the highest with 45 (36.9%) respondents rating these facilities as satisfactory. although specific it facilities were not investigated, general it support 6 (4.9%) topped the ‘good to very good’ category. figure 4: provision for students with disabilities. in many higher education institutions abroad, facilities to support students with disabilities include: rooms that are designed to support students with mobility disabilities, specialist software for students with sight and dyslexic disabilities, alternate access facilities to buildings and support group structures for students with disabilities (georgeson et al. 2015; lichiello 2012). at the university of mauritius, some of these facilities have been provided. for example, lectures for students with mobility problems are done in places which are easily accessible to them. students with visual problems are allowed 25% additional time to submit their scripts. the font size on question papers is also enlarged. colours may also be used as appropriate. there is also provision for braille-printed exam papers. for students with other types of disabilities, the faculties should provide necessary and appropriate facilities as far as is possible with the resources available and without compromising academic standards. the adoption of e-learning, and its associated tools, was viewed favourably by most respondents (92.6%) as facilities that could enhance and encourage better learning for students with disabilities. the greatest motivations for these opinions was flexibility: ‘the ability to allow them the flexibility to work from home’ – respondents r6, r18, r20. this was supported by respondents r8 and r14, who said that these students ‘will not have to travel long distances’ (r8, r14) which is sometimes difficult for those who do not have transport facilities. however, respondent r9 felt that e-learning would be inappropriate as these students ‘want to attend university’ like regular students do. respondent r5 also supported this view stating that ‘e-learning would make them feel like they are different from other students and hence deprive them from social interaction which is in a way rejecting them from society’. the questionnaire thereafter moved on to investigating awareness and appropriateness of laws associated with protecting and assisting students with disabilities. a large number of respondents, totalling 71 (58.2%), were not aware of any disability laws in mauritius. of the 51 (41.2%) respondents who were aware of disability laws in mauritius, 12 respondents (23.5%) stated that these laws do not protect students with disabilities, while 6 respondents (11.8%) were unsure. the motivations provided by these respondents supported the statistics above, as most of the comments discussed laws that protect disabled citizens in general, rather than specifically focusing on students with disabilities. respondent r7 stated that laws for people with disabilities ‘gives them the opportunity to get jobs … they do not suffer from discrimination’ (r7, male, student). this was supported by respondent r87 who indicated that there are ‘… laws that are enforced for recruitment of disabled persons’ (r87, female, student) and respondents r113 and r121 who spoke about ‘incentives and protection against discrimination’ (r113, r121, male, student). respondent r49 stated that ‘these laws are not well enforced in every institution … they should be reviewed and amended to help the student’ (r49, female, student). only four respondents (3.3%) were aware of any foreign laws that supported people with some form of disabilities. feedback from students with disabilities the next part of the survey focused on views from students with disabilities. only six responses (4.9%) were received from students with disabilities. nevertheless, their feedback is of crucial importance for this study. the largest form of disability indicated was visual impairment (three respondents) followed by mobility difficulty (one respondent), partial hearing loss (one respondent) and one asthmatic student. five of these respondents (83.3%) indicated that their parents provided them with the necessary medical support to assist them in being an active member of society. all six participants (100%) further affirmed that they are unaware of any university disability advisor at the university of mauritius who they can contact to discuss their requirements and problems. the next set of questions gathered the views of students with disabilities about their actual experience at the university of mauritius, which are presented in figure 5. figure 5: views of students with disabilities about their university experience. three (50%) respondents indicated that that their choice of subjects was affected by the limitations they faced with their disability. the selection of university at which to study did not seem to have a role to play. only two respondents (33.3%) faced difficulties with lectures, tutorials, practicals, technical facilities and learning resources. one (16.7%) respondent indicated that his disability was a barrier for him to complete his assessments successfully. the respondents’ experience with regard to the support they obtained from their lecturers was very positive, as the majority of them (83.3%) were very satisfied with their lecturers’ role in their studies. support staff was equally helpful, as indicated by 4 (66.7%) respondents. in the general comments section, respondents r13, r20 and r25 were keen on learning about the laws in mauritius that specifically catered for students with disabilities. an interesting suggestion was made by r9 with regard to increasing the accessibility of the university campus by students with disabilities. the respondent proposed that by allowing students with disabilities from different faculties to suggest inaccessible places (which are important to them), the university of mauritius will be in a better position to take appropriate measures to make the campus more accessible for such students. discussion of findings of the 500 students who were sent the questionnaire, only 122 responded, out of which 6 were students with disabilities. compared to the percentage of students with disabilities at the university of mauritius, this is a relatively high response rate. the university of mauritius has a population of 12 500 students. this could indicate that these students were not reticent to participate in this study to demonstrate their knowledge or voice their concerns. for ethical and data privacy reasons, it was not possible to get a named list of students with disabilities from the university of mauritius. it was noted that participants were aware of family members and fellow students with disabilities. the university of mauritius may not be doing enough to inform the student community about the support that they offer for students with disabilities. this was indicated by the large number of respondents who were not aware of the facilities and support structures that are provided to students with disabilities. the results indicate that the it facilities are the best support provided at the university for both able-bodied students and students with disabilities. this correlates with the large support for the adoption of e-learning as a tool to promote better interactivity and inclusivity of students with disabilities into the mainstream education structure. the awareness of laws supporting people with disabilities was restricted to laws relating to social justice and higher education. there is a general feeling among the respondents that laws associated with better support and inclusion of students with disabilities into tertiary education are required, or if such laws exist, they should be made aware of them. there was very little knowledge of foreign laws associated with students with disabilities. responses received from students with disabilities, although small in number, provided insights into their experiences while studying at the university of mauritius. although they are provided with support from their parents, they seem to be getting little support at the institution itself. lecturers and support staff were identified as being sensitive to the disabilities of students, but a formal support structure at the university of mauritius seems to be lacking. this calls for greater investigation by the relevant stakeholders, at the university, to find ways to enhance the learning experience at the institution, for students with disabilities. conclusion this study indicates that the university of mauritius has been making some effort to provide special facilities and arrangements to support students with disabilities. nevertheless, some support structures, such as student liaison officers, appropriate recreational and sport facilities and special access features have been identified as lacking at the university by the students. the introduction of these facilities coupled with increased awareness of them will ensure that students with disabilities are able to pursue their studies with the same amount of effort as those without any disabilities. most students identified e-learning as having a key role to play in the support of students with disabilities. essentially, the problems and barriers that are faced by students with disabilities in tertiary education must not be overlooked, in order to offer equal opportunities to every student. to conclude, students with disabilities are neither forgotten nor excluded at the university of mauritius; however, more effort is certainly required for their seamless inclusion. limitations two limitations associated with this study are the small number of participants with disabilities and that the context is restricted to the university of mauritius. future research should look at expanding this to include the participation of more students with disabilities and more tertiary institutions in mauritius and abroad in order to get a more holistic picture of the situation. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced the writing of this article. authors’ contributions r.p.g. was the project leader. s.p. and u.g.s. were responsible for experimental and project design. r.p.g. and u.g.s. performed most of the experiments. r.p.g. made conceptual contributions while u.g.s. and s.p. analysed the results and discussed the findings. references 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n.m.h., hamzah, m.p., hassan, m.n., mamat, n.f.a. & rifin, m.a.s.m., 2015, ‘integrating e-learning with radio frequency identification (rfid) for learning disabilities: a preliminary study’, advanced computer and communication engineering technology 895–903, viewed 18 april 2017, from https://www.springerprofessional.de/en/integrating-e-learning-with-radio-frequency-identification-rfid-/2165952 appendix 1 all information would be kept private and confidential. please complete this survey anonymously. do not write your name, address or any personal details anywhere in the form. researchers: mr s pudaruth, dr rp gunputh and dr ug singh a survey on general awareness of laws and facilities for students with disabilities at the university of mauritius 1. what level of study are you in? a. undergraduate b. postgraduate c. alumni d. other 2. gender a. male b. female 3. at what age did you commence your studies? a. 20 and under b. 21–30 c. 31–45 d. over 60 4. how do you study? a. full-time b. part-time c. other 5. do you have any close relatives or friends who suffer from any form of disability which consequently has a serious impact on his/her studies in a tertiary education? a. yes b. no 6. are you aware that there are students at your university who suffer from any form of disability? * a. yes b. no 7. how much funds do you think the tertiary education where you are registered actually is ready to finance so that students who are suffering from any form of disability may be provided with the necessary facilities they need? a. more than 1 million rupees annually b. more than 2 million rupees annually c. more than 3 million rupees annually d. more than 4 million rupees annually e. i have no idea 8. do you think that public and private tertiary institutions are well equipped to provide facilities for students suffering from disabilities? a. yes b. no please rate questions 9 to 13 using the scale provided. very poor poor satisfactory good very good 9. how would you rate the university’s it provisions for disabled students? 10. how would you rate the university’s library provision for disabled students? 11. how would you rate the accessibility, for disabled student, of the university’s campus, in general? 12. how would you rate the university’s sports and recreation facilities, for disabled students? 13. how would you rate the facilities in your department/school to support disability requirements? 14. do you think e-learning would encourage students who are suffering from any form of disabilities to register on e-learning programmes to be graduated? a. yes b. no 15. motivate your answer to question 14 16. are you aware of any disability laws in mauritius? a. yes b. no 17. do you think this/these law(s) protect(s) people suffering from disabilities? a. yes b. no c. other: 18. why? motivate your answer to question 17 19. do you suffer from any disability? a. yes b. no 20. which of the following categories best describes your disability? (please select as many as apply to you) a. dyslexia b. unseen disability (e.g. asthma, epilepsy) c. deaf/hearing impairment d. wheelchair user/mobility difficulty e. asperger’s syndrome/autism f. mental health difficulty g. blind h. eyesight problems i. other: 21. do your parents provide the necessary medical support (medical treatment/medical devices) in order for you to cope properly with your studies at the university you have joined and registered? * a. yes b. no 22. are you aware of any university disability advisor at the university? * a. yes b. no please rate the statements in questions 23 to 32 using the rate scale provided * strongly agree agree neutral disagree strongly disagree 23. my disability affected my choice of subject(s) to study. 24. i chose to study at this university because it offers support for disability students. 25. i have faced disability-related barriers, at the university, which have impacted on my learning experience in lectures. 26. i have faced barriers, related to my disability, at the university, which have impacted on my learning experience in on-campus laboratory and/or practical work. 27. i have faced barriers, related to my disability, at the university, which have impacted on my learning experience in other on-campus classes (e.g. seminars, tutorials). 28. i have faced barriers, related to my disability, at the university, which have had an impact on my use of technical facilities (e.g. computers, multimedia, audio/visual equipment, photocopying). 29. i have faced barriers, related to my disability, at the university, which have affected my use of learning resources, (e.g. lecture handouts, computer-assisted learning packages). 30. i have faced barriers, related to my disability, at the university, which have affected my experience with assessments/tests/examinations. 31. academic staff (e.g. lecturers/tutors) have been supportive and helpful when i have approached them with concerns about to disability-related barriers i have experienced 32. support staff (e.g. administrators, technicians, librarians) have been supportive and helpful when i have approached them with concerns about disability-related barriers i have experienced 33. are you aware of any foreign legislation which may improve our local legislation on disability law, with particular focus on tertiary institutions? 34. do you have any suggestions/recommendations to improve this survey? abstract introduction research method and design results discussion limitations of current study conclusion acknowledgements references about the author(s) nadia m. souchon department of speech-language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa esedra krüger department of speech-language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa renata eccles department of speech-language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa bhavani s. pillay department of speech-language pathology and audiology, faculty of humanities, university of pretoria, pretoria, south africa citation souchon, n.m., krüger, e., eccles, r. & pillay, b.s., 2020, ‘perspectives of working-age adults with aphasia regarding social participation’, african journal of disability 9(0), a713. https://doi.org/10.4102/ajod.v9i0.713 original research perspectives of working-age adults with aphasia regarding social participation nadia m. souchon, esedra krüger, renata eccles, bhavani s. pillay received: 26 feb. 2020; accepted: 15 oct. 2020; published: 15 dec. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: working-age adults with aphasia experience difficulties in social participation, specifically fulfilling social roles and reintegrating into communities. literature regarding social participation of people with aphasia (pwa) is predominantly based on studies conducted in high-income countries (hic), limiting generalisability of findings. perspectives of social participation are influenced by person, place and cultural background warranting investigation in heterogeneous lowand middle-income countries (lmics), like south africa. objectives: describe perspectives of working-age adults with aphasia regarding social participation within the first 2 years post-incident. method: semi-structured interviews gained perspectives of 10 working-age adults (with mild to moderate aphasia) using principles of supported conversation for adults with aphasia. data were thematically analysed to describe participants’ perspectives of social participation. results: seven themes were identified pertaining to participants’ perspectives of social participation. participants considered rehabilitation services, faith-related activities and returning to work as valued areas of social participation. previous interests, presence of support and characteristics of communication partners determined their preference and willingness to participate with others. finally, personal attitudes and feelings continued to influence their perspectives of social participation, as well as their motivation to participate. conclusion: successful social participation was dependent on the pwa’s perceived value of social activities and presence of support from significant others. speech-language therapists are in the ideal position to facilitate pwa’s communication abilities and their experience of successful participation through the implementation of person-centered care and community-led intervention. this study provided a preliminary investigation of social participation in south africa and further investigation is warranted. keywords: social participation; aphasia; lower and middle-income countries; stroke; working-age adults. introduction people with aphasia (pwa) often experience difficulty fully participating in social situations and everyday activities because of their acquired language impairments (alary gauvreau & le dorze 2020). as language is the medium in which human interactions occur, symptoms of aphasia have far-reaching consequences than mere communication difficulties, indicating the crucial role communication abilities play in social participation (woelders et al. 2018). people with aphasia experience decreased exposure to social situations as well as challenges when attempting to participate in meaningful daily tasks, often leading to social isolation (fotiadou et al. 2014). additionally, communication difficulties may result in changes in their relationships with family and community members contributing to a decline in social activities (kusambiza-kiingi, maleka & ntsiea 2017). people with aphasia’s social experiences are largely defined by context, specifically cultural backgrounds and beliefs. this influences the manner in which pwa may react to their diagnosis as well as their community’s attitudes towards disability affecting social participation (penn & armstrong 2017). community organisation and personal attitudes differ according to person, place and cultural background, warranting the adoption of an anthropological and holistic perspective when investigating an individual’s experience of disability and their ability to reintegrate into everyday life (legg & penn 2014). clinical practice and service-delivery frameworks are often developed in the high-income countries (hic) that have access to increased resources and services (gonzalez-suarez et al. 2012). health care professionals in lowand middle-income countries (lmic) encounter challenges during service-delivery as frameworks may not be contextually relevant because of differing health care systems, limited resources and a contrast in patient’s overall needs (gonzalez-suarez et al. 2012). these challenges may be heightened in south africa where there is a multicultural society, quadruple burden of disease and limited context-specific resources (bradshaw et al. 2019; gonzalez-suarez et al. 2012). continued research on aphasia rehabilitation in south africa is warranted to develop and provide holistic context-specific frameworks to guide healthcare professionals during intervention (masuku, mophosho & tshabalala 2018). therefore, healthcare professionals must consider pwa’s perspectives of meaningful engagement and willingness to participate, alongside their cultural context, community attitudes and beliefs and accessibility to their environment (laliberté, alary gauvreau & le dorze 2016; penn & armstrong 2017). social participation is regarded as one of the most important determinants of successful rehabilitation, yet its definition is still unclear (de souza et al. 2017). the world health organisation’s (who) international classification of functioning, disability and health framework [icf] (world health organization [who] 2001) encourages speech-language therapists (slts) and other healthcare professionals to acknowledge the multitude of factors involved in pwa’s rehabilitation process. social participation is largely defined by an individual’s successful involvement in social activities including engagement in personal relationships and community life, specific to the context in which they live (laliberté et al. 2016). successful social participation is difficult to achieve for pwa because of their communication difficulties, as social participation is reliant on effective communication between individuals and significant others. this leads to difficulties with interpersonal relationships, accessibility to community life and employment for pwa (alary gauvreau & le dorze 2020). social participation comprises of dynamic and complex individual factors that are influenced by personal, environmental and social factors (woodman et al. 2014). research conducted within the south african context found an indisputable relationship between an individual’s experience of aphasia with their social and cultural values and beliefs (legg & penn 2012). south africa, with its culturally and linguistically diverse population, may have reports of differing experiences of aphasia and contrasting perspectives of social participation, when compared to hic (watermeyer 2019). the importance of acknowledging culture and context when attempting to understand social participation for pwa is recognised in literature, although the majority of research is from hic (pike, kritzinger & pillay 2017). there is a need for further investigation from heterogeneous lmic, such as south africa. the profile and experiences of pwa in lmic may differ to those in hic, as contextual experiences are embedded in individuals’ understanding of illness; influencing pwa’s response to aphasia, attitudes towards the future and the definitions of meaningful treatment outcomes (nweke & eze 2019). the south african environment presents increased challenges for those with communication difficulties attempting to engage in successful social participation because of decreased awareness of communication disorders such as aphasia, alongside the lack of appropriate resources. these difficulties often result in misconceptions of an individual’s abilities, leading to reduced accessibility to their environments, including return to work (rtw), visiting shopping centres or making use of public transport (barratt, khoza-shangase & msimang 2012; green, mophosho & khoza-shangase 2015). people with aphasia’s social participation may be further influenced by personal factors such as their age and role within society, as working-age adults (18–65 years of age) are often involved in a broader spectrum of activities compared to geriatric adults (pike et al. 2017). it is estimated that up to 50% of strokes occur in adults aged 20 to 50 years (krishnamurthi et al. 2015). working-age adults face increased challenges compared to older pwa, as they are likely to live longer with the effects of aphasia, resulting in greater expectations of financial and social independence (ntsiea, van aswegen & olorunju 2013). this challenging phase of life requires pwa to re-engage in high-demand situations such as work, social situations, parental and spousal roles; however, they are often unable to fully reintegrate their premorbid roles, resulting in social impairments and social isolation (alaszewski & wilkinson 2015; törnbom, lundälv & sunnerhagen 2019). despite the high-demands faced by working-age adults with aphasia, there is limited evidence available regarding their experience of aphasia and their ability to re-engage in everyday life (pike et al. 2017). one study indicates that working-age adults with aphasia express a desire to re-integrate within the community, employment, education, domestic life, social and leisure activities (pike et al. 2017). younger pwa are described to be intrinsically hopeful, resulting in increased motivation to reintegrate into everyday life, which may be because of the need to plan for their future and their demanding roles (alaszewski & wilkinson 2015). contrastingly, the perspectives of social participation in older adults with chronic communication difficulties often demonstrate a reluctance to participate in activities because of feelings of demotivation and complacency as they have become accustomed to this new way of life (alaszewski & wilkinson 2015; törnbom et al. 2019). an individual’s age, amount of time post-incident and stage of life play a key role in shaping social interests influencing perspectives of social participation (ellis et al. 2019). these factors warrant the investigation of perspectives of working-age adults within the first 2 years post-incident. it is evident that working-age adults present with contrasting experiences of social participation warrant individualised intervention. the need for person-centred care is highlighted, where slts are encouraged to facilitate functional treatment outcomes, resulting in increased quality of life (qol) and valued social outcomes (goodwin 2016). literature shows that pwa are more likely to experience successful engagement in activities when rehabilitation targets realistic and personal goals (haley et al. 2019; törnbom et al. 2019). the icf (who 2001) framework encourages slts to target various areas of pwas’ everyday lives, thereby equipping them with the necessary and appropriate communication skills to participate in different social environments allowing meaningful outcomes (elman 2016). there is a need for slts to implement holistic intervention based on pwas’ personal perspectives, including their core values and interests, whilst considering the needs of the environmental context (haley et al. 2019). research demonstrates the need for continued attempts to understand the multiple factors involved in pwa’s experience of aphasia in lmic, with the aim of improving guidance for healthcare professionals targeting meaningful and successful reintegration into everyday life (legg & penn 2013, 2014; pike et al. 2017). there is great benefit in the adoption of culturally attuned frameworks of intervention, as it reinforces the principles of person-centred care and acknowledges personal factors alongside contextual environments (penn & armstrong 2017). person-centred care goes beyond focusing on the individual as it considers the role of pwa’s environment, using principles of community-based interventions, increasing community awareness of aphasia, allowing improved accessibility and empowering of pwa within their communities (penn & armstrong 2017). speech-language therapists are in the ideal position to consider pwa’s communication abilities and needs allowing them to successfully participate in various social environments. speech-language therapists are encouraged to obtain and target social participation through the implementation of dynamic dialogue between slt and client, allowing slts to acknowledge pwa’s perspectives and target communication skills needed for their preferred social contexts. the aim of this study was to obtain working-aged pwa’s perspectives of social participation within the first 2 years post-incident in terms of what social activities, relationships and support pwa regard as meaningful, specific to their context. research method and design a phenomenological study was conducted using once-off semi-structured interviews with pwa. this approach recognises the complexity of the human experience, which is grounded in the world and experienced intersubjectively (mason 2002; neubauer, witkop & varpio 2019). this interpretive phenomenological approach (tuffour 2017) allowed detailed examination and analysis of the lived and contextual experience of pwa gained through participant’s personal experiences and personal perception of social participation. this design allowed researchers to recognise, analyse and understand multiple facets that may contribute to a phenomenon rather than simplifying the problem. facets such as context-specific barriers and facilitators present in pwa’s environment were considered (leedy & ormrod 2014) including their communication difficulties and the effects on social participation. a qualitative design was the most appropriate way to acknowledge and analyse the synergistic factors that may influence a complex phenomenon such as social participation (törnbom et al. 2019). participants ten adults with mild to moderate aphasia were recruited, using purposive sampling, as participants had to meet a specified inclusion criteria (leedy & omrod 2014). participants were required to have a confirmed diagnosis of mild-moderate aphasia based on the results of the western aphasia battery-revised (wab-r) (kertesz 2009), as seen in table 1. participants had to be aged between 20 and 65 years old, with no other co-morbid disorders that may influence social participation, such as dementia or moderate-severe apraxia, as confirmed by their respective slts’ assessment results. the absence of hearing and visual impairments were ensured using the hearscreen™ (swanepoel 2016) and peek acuity (bastawrous et al. 2015) smartphone applications. table 1 reveals participants’ linguistic diversity demonstrating that although all participants spoke more than one language, english proficiency and understanding was ensured during interviews; screening tools and the interview schedule were compiled in english, as this is the lingua franca in south africa (khokhlova 2015). participants had to be within the first 2 years post-incident to avoid possible compounded feelings of demotivation to participate in social activities, as often seen in individuals with chronic aphasia (törnbom et al. 2019). this criterion was confirmed by participants’ respective slts’ case history and assessment results. table 1: participant characteristics (n = 10). data collection five slts working at private rehabilitation facilities were contacted in gauteng, south africa to recruit participants from their caseloads. prospective participants were contacted by the first researcher and informed consent was obtained using principles from supported conversation techniques for adults with aphasia (sca) (kagan, shumway & podolsky 2010). supports aided the pwa’s understanding of the study aim, as well as their proposed role in the study. once the screening of participants determined candidacy, a once-off semi-structured interview was conducted by the first researcher, a qualified slt. the semi-structured interview enabled the researcher to follow the participant’s lead and explore the possible factors that may influence participant’s perspectives of a phenomenon, using open-ended questions, allowing the exploration of their thoughts, feelings and beliefs (dejonckheere & vaughn 2019; nelson 2013). the interview consisted of initial closed-ended questions used to orientate the participants to the topics discussed in the open-ended questions, allowing consolidation and clarification of their information (nelson 2013). the interview was compiled using existing literature on social participation in aphasia rehabilitation (dalemans et al. 2008, 2010a, 2010b; garcia & connor 2011; laliberté et al. 2016; le dorze et al. 2014; wallace et al. 2017). additionally, the living with aphasia: framework for outcome measurement (a-from) (kagan et al. 2008) was used to guide interview areas and corresponding questions. the a-from is an aphasia specific adaptation of the icf that encourages slts to consider the impact of aphasia at a variety of levels, such as participants’ communication environment, personal attitudes and level of participation in activities. the semi-structured interview comprised of six areas including personal information, preand post-incident environments, feelings and attitudes, communication and language, and participation in life situations with family, friends and the community (simmons-mackie et al. 2014). participant’s interviews lasted approximately 1 h and were recorded using a samsung a7 smartphone. principles of sca conversation for adults with aphasia techniques, pictorial aids and written supports were used in conjunction with the interview questions to augment participants’ ability to contribute and provide their perspectives (murphy & boa 2012). principles of the sca supported participants’ expressions of their perspectives using written aids and pictorial aids, whilst speaking at a slow pace (kagan et al. 2010). keywords regarding the subject of interview questions were written down on blank paper as a reference for participants. pictorial aids facilitated sharing of opinions on specific topics by scaling participants’ feelings and satisfaction (i.e. happy, unsure and unhappy) and elaborating on these feelings (murphy & boa 2012). participants could describe their level of satisfaction within the different areas of social participation by placing social participation activity pictures in a column associated with their level of satisfaction (happy, unsure or unhappy). this facilitated participants’ sharing of opinions and feelings on specific topics, whereby the researcher was able to prompt participants to further elaborate. data analysis data were analysed using thematic analysis: a useful method for examining the perspectives of participants, highlighting similarities and differences, and possibly generating unanticipated insights (braun & clarke 2013; leedy & omrod 2014). qualitative data analysis (qda) miner-lite software (provalis research 2015) was used to code the data, which provided a dependable and effective measure for coding and categorising the dynamic factors involved in pwa’s perspectives of social participation. interviews were transcribed verbatim by the first researcher. thematic analysis followed steps recommended by braun and clarke (2013). the first phase involved the first researcher reading the transcripts multiple times to identify common perspectives across the six areas evaluated in the semi-structured interview, such as the everyday routines, personal attitudes and beliefs, as well as relationships with family, friends and community (laliberté et al. 2016). the second phase made use of qda miner-lite software (provalis research 2015) to code specific extracts that formed the foundation of participants’ common perspectives. common or like-minded perspectives were then highlighted and the respective extracts were coded under descriptors such as ‘desire to rtw’ or ‘supportive nature of significant other’. phase three consisted of categorising the codes according to their overarching themes which described the sample’s perspectives of social participation, as demonstrated in table 2. table 2: example of coding tree used during data analysis. reliability, validity and trustworthiness the value and rigor of this research study was accounted for by establishing trustworthiness, in which the researcher considered the credibility, dependability and confirmability of the results (amankwaa 2016). qualitative data analysis miner-lite’s coding and categorisation features were used to verify connections between participant’s statements and overarching themes ensuring credibility (amankwaa 2016; provalis research 2015). a peer-review analysis of the semi-structured interview schedule was conducted by an experienced external reviewer, ensuring confirmability and content validity, whilst reasserting the interview questions, responded to the study’s aim and was not hampered by researcher bias (pyett 2003). the supplemental use of sca techniques, pictorial and written aids acted as support for participants revealing their competence and increasing the confirmability and trustworthiness of participants’ responses (kagan et al. 2010). dependability of results were ensured during an extensive review process between the first researcher (n.m.s.) and the last researcher (b.s.p), where a consensus on themes was reached using peer debriefing, reflexive thoughts and revisiting the specific extracts from the raw data (braun & clarke 2013; lincoln & guba 1985). this ensured that the interpretation and development of themes were reflective of participants’ personal perspectives and related to the aim of the study. ethical consideration institutional ethical clearance was granted by the research ethics committee of the faculty of humanities, university of pretoria (hum043/05/19). permission letters were sent to several slts working in the gauteng area to recruit participants from private practices. the study aim and procedures were explained in a manner prospective participants could understand, using principles of sca (kagan et al. 2010). privacy and confidentiality were maintained throughout the research process. an alphanumeric code was assigned to each participant ensuring that no individual’s responses could be identified by anyone other than the researchers involved (nelson 2013). results seven main themes were identified according to the aim of the current study. themes included participant’s personal attitudes towards social participation, the types of social activities and relationships participants (p) regarded as meaningful, as well as the importance of a supportive environment. main themes preferred communication partners eight of the 10 participants (80%) preferred spending time with family members or close friends, as opposed to meeting new people or attending larger social events. some participants stated that they were not inclined to, or want to meet new people because of their existing friendships being satisfactory, whilst others expressed feelings of anxiety regarding possible communication breakdowns. it appears that the level of familiarity between the participant and communication partner, the duration of their relationship and the supportive nature of the communication partner influenced participants’ willingness to socialise post-incident, as seen in the statements below: ‘i must say, they understand. x (friend) (for) instance is one of my best friends and she, you know, picks it up and it’s amazing how they pick up. they understand what i wanna say when i can’t say it and they say “is it that or that?” they understand.’ (p1) ‘you don’t talk too much with new people…because they don’t know me. (but) people if i can, if i can do certain things…those that know me…if i say something, they will offer you help … whereas strange people won’t sommer [afrikaans word – local language, meaning “simply”], you don’t play with you don’t p-talk to them, it’s different.’ (p4) ‘well they (wife and best friend) um, i mean the thing is they say, well, they see the improvements and they…that’s what they focus on and they don’t say “oh no, you not doing great.”’ (p7) the remaining two participants (20%) were open to attending social events and engaging with new individuals in the future, when they are able to independently communicate. in the meantime, these two participants were willing to meet new people provided their significant others were present to facilitate and support conversations. return to work seven participants (70%) expressed a desire to rtw yet only three participants (30%) were able to do so. the reduced rate of rtw highlights enforced early retirement because of aphasia. participants expressed feelings of previous job satisfaction and described themselves as ‘busy’ people pre-incident whereby they missed having stimulating tasks, or co-workers to interact with, as demonstrated by p4’s statement: ‘i would love to work again, i would, i really would because it’s it’s it’s good for you.’ (p4) most participants expressed a willingness to rtw because of a desire to keep busy and interact with others in a work setting, as opposed to staying home, as seen in the statement by p7: ‘if it wasn’t for work, i’d be at home and what would i do at home? who’s …who is here? there’s no one …’ (p7) participant 7 went on to explain that simple conversations with colleagues were missed, as seen in the following quote: ‘even the colleagues, i don’t i don’t so-socialise with them a lot, but they-they do say hi and then i say hi back.’ (p7) the participants who were able to rtw (30%) were men diagnosed with mild aphasia, with a mean age of 42 years. certain pertinent factors appeared to contribute to reintegrating into the work environment. in the cases of p7 and p9, their places of work implemented adaptations to their roles through the assignment of less demanding tasks, reduced caseloads and flexible working hours. for p6, he was able to rtw as he received direct support from his significant other in managing his business. those that did not express desire to rtw (n = 30%) stated that work was not a priority at that moment, as they preferred to prioritise meaningful tasks such as spending quality time with family, carrying out previous hobbies or interests or they simply felt they ‘had worked enough’ and may have been closer to the age of retirement. faith-related activities seven participants (70%) explained that faith-related activities, such as attending church or bible study groups, were important parts of their weekly social participation routine. faith-related activities were found to be the primary social activity amongst participants, which included social participation with members other than the participants’ immediate family or close friends. participants looked forward to attending faith-related social gatherings as they felt comfortable, supported and safe in this environment. p3 explained that he felt safe in church but did not always feel comfortable in other settings, and stated: ‘i talk to everybody in the church, but outside you can’t do that, people don’t do that, but in church, you talk to me and i talk to everyone’. participants also explained a heightened sense of purpose to help others. this is illustrated by the following statement by p1: ‘in a sense i’m glad that i had the stroke, because without it wouldn’t have saved me [christian term used to explain renewed belief in god]. there is obviously a meaning behind it and god said he has got a plan for me. i talk to people who had a stroke and i tell them “it’s going to get better, i’ve been through it” …’. the remaining three participants (30%) did not consider faith-related activities an important area of social participation and did not engage in faith-related activities often; rather their free time was spent with family and/or close friends. value of rehabilitation services participants received several rehabilitation services, including speech-language therapy (st), physiotherapy and occupational therapy. nine participants (90%) mentioned that therapy was a part of their weekly routines, of which 20% stated physiotherapy exercises were a part of their weekly routines and 70% reported that st exercises and home programmes became part of their daily and/or weekly social routine. it appears that slts may play a role in providing feelings of optimism and motivation for improvement in the future, as highlighted by the following: ‘i wake up in the morning, i have breakfast and then i’ll go with the things (gestures to st home programme), i read the books, it’s just therapy at the moment (gestures to st home programme again).’ (p10) ‘ya eish [colloquial exclamation – expressing emotion], i changed, even my communication skills, i hope they will help me here… (gestures to st private practice).’ (p6) participants frequently reported they performed their home programmes with the assistance of a caregiver or significant other, indicating a case of social participation. additionally, it appears that participants’ st sessions and the home programmes became an opportunity for social participation, as seen by the statements below: ‘most of the time, especially if um y (slt) gave me some homework…then we (wife, child and participant) sit and discuss about it and then they hear my views and what do i have to say.’ (p9) ‘oh i love it (st)! z (slt) we have such nice fun… i tell you but we’ve had such giggles!’ (p4) these findings highlight the possible role of the slts in pwa’s social network, as well as the influence of rehabilitative services in shaping participants’ perspectives of social participation, fostering hope and motivation, whilst providing facilitating social participation in weekly routines. returning to previous interests participants’ pre-incident interests guided their preference for the type of activities they engaged in post-incident. participants were questioned regarding their leisure time and their willingness to engage in new or unfamiliar social activities. all participants either continued participating in previous activities, such as spending time with old friends or family, gardening, cooking or other work, or they expressed a desire to re-engage in previous social activities as opposed to engaging in new or unfamiliar activities. p9 specifically stated that he had not started engaging in new activities as he felt he was ‘not ready yet’ and preferred to direct his focus on his preferred activities he engaged in prior to the incident, such as work and spending time with family, before he could start new activities. this was reiterated in the following statement by p9: ‘first thing is, i must get fixed you know then i will see…then i can decide what i want to do’. findings demonstrated participants’ preference for the quality of activities as opposed to the quantity thereof, in which participants explained they would prefer to see improvement in their previous interests before commencing new activities. presence of support from others most participants (80%) were more inclined to attend social events and visit public areas if they were accompanied by a caregiver or significant other. for example, p9 stated he would rather stay home and would only go to new places if accompanied by his spouse, as he described it to be ‘pretty necessary’ for his wife to help him communicate. notably, p9 was diagnosed with mild aphasia and was able to rtw; however, he still did not feel comfortable participating independently in new environments. this feeling was reiterated by 50% of participants, who reported a desire for support because of possible communication breakdowns with unfamiliar communication partners. some participants (30%) were also reliant on physical support from their significant others, such as driving to public places. positive attitudes and feelings nine participants (90%) expressed feelings of hope for improved communication and participation. participants described their eagerness to function as close as possible to their pre-morbid lifestyle and to participate more frequently in social activities once they experienced significant improvement. specifically, participants did not appear to view their future negatively, but rather looked forward to reaching a level of functioning where they felt comfortable to participate with family, friends and within the community, as demonstrated by the following statements: ‘i still want to meet new people, because i practice every day.’ (p6) ‘it (aphasia) make me so sad but it’s one or the other, at the end of the day you need uh, umm you need to try-try and give your all, give it your all.’ (p9) a positive attitude towards the future was noticed throughout the interviews, where participants appeared to have a heightened sense of purpose and hope. participants reached a level of understanding of their current circumstances, in which they were satisfied with their present level of participation, whilst still being determined to achieve functional improvements. discussion the results of this study indicated that social participation as viewed by participants of this study was determined by the perceived value of activities and their willingness to participate. results further demonstrated that perspectives of meaningful social participation are shaped by personal factors, such as pwa’s feelings and attitudes towards a social situation, communicative skills and confidence. environmental factors were found to play a role in forming perspectives, particularly the supportive nature of communication partners and the latter’s communication skills, alongside attitudes of community members towards aphasia as well as accessibility to different environments. participants described an overall attitude of positivity and motivation towards the future and engagement in social activities, as they expressed a willingness to interact more with family, friends and within their community, once they feel confident. this motivation may be attributed to their faith, as indicated by 70% of participants. research demonstrates that faith may contribute to improved recovery because of its provision of a sense of identity and increased feelings of hope, strength and support (laures-gore et al. 2018; masuku & khoza-shangase 2018). the increased levels of hope may also be explained by the younger age of the sample, as it is evident that the experience of aphasia differs between working-age adults with aphasia and older individuals (alaszewski & wilkinson 2015). the impact of the onset of aphasia and the change experienced is arguably more abrupt in working-age adults because of their highly demanding stage of life. this may explain the increased motivation to return to a pre-morbid level of functioning and independence sooner, rather than later (alaszewski & wilkinson 2015). additionally, enthusiasm may be attributed to the minimal number of years post-stroke, as pwa 7 to 8 years post-incident reported contrasting feelings, where they were satisfied with the changes in their everyday routine and more accepting of their level of functioning (törnbom et al. 2019). the definition of living successfully with aphasia must undergo a paradigm shift from managing the effects of aphasia towards participation in everyday life to the best extent possible (manning et al. 2017). people with aphasia who adopted positive attitudes of hopefulness and motivation are more likely to experience success when attempting to re-engage in their hobbies and social activities (dalemans et al. 2010b; woodman et al. 2014). it is the role of health care professionals, such as slts to acknowledge the importance of these attitudes and behaviours in promoting meaningful rehabilitation outcomes (woodman et al. 2014) through facilitating opportunities for social participation and improved communication abilities. preference for communication partners a decline in participants’ social networks post-incident was reported upon the diagnosis of aphasia, resulting in a preference for specific communication partners. participants were more inclined to engage with family and close friends with whom they experienced greater conversational ease. the characteristics of communication partners significantly impact pwa’s willingness to socialise, whereby increased levels of familiarity and duration of a relationship with a significant other result in pwa being willing to participate socially (dalemans et al. 2010a). people with aphasia demonstrate a preference for meaningful social situations specifically time with family and close friends, where they feel understood, accepted and supported (manning et al. 2017), as demonstrated by the findings of the current study. it has been found that pwa’s communication confidence and their ability to pre-empt communication breakdowns impact the likelihood of their participation in social situations. communication partners can support pwa’s confidence and help manage communication breakdowns, increasing pwa’s motivation to participate, in turn facilitating social participation (chiou & yu 2018). speech-language therapists must facilitate not only the pwa’s communication abilities but also the role of significant others in attaining successful social participation. acknowledgement of pwa’s context and individualised goals are reflected in the principles of person-centred care, allowing for a greater understanding of personal and environmental challenges (goodwin 2016). speech-language therapists are encouraged to target not only the communication impairment but also the pwa’s feelings of confidence and motivation to participate, as well as the conversational skills of the significant others through the use of conversational partner training (chiou & yu 2018; simmons-mackie, raymer & cherney 2016). return to previous interests personal factors continued to shape participants’ perspectives of social participation, including their preference for pre-incident activities. participants expressed a desire to re-engage in previous interests, which was reiterated in their willingness to continue interacting with family and close friends, return to previous leisure activities and engage faith-related activities rather than pursuing novel experiences. people with aphasia have demonstrated a desire to improve their ability to converse within group settings and discussions, as well as to increase their social networks (wallace et al. 2017). however, participants in the current study expressed reluctance for increased involvement in social situations, with a preference for improvement in the activities they engaged in pre-incident. the value of quality interactions over quantity is well documented in literature, reinforcing the importance of pwa’s feelings and attitudes in shaping their perspectives of social participation (dalemans et al. 2010a; howe 2017; törnbom et al. 2019). speech-language therapists need to acknowledge pwa’s pre-morbid preferences, together with personal and environmental factors that influence their decision to engage in certain social activities as opposed to others, thus, allowing the implementation of person-centred care and empowering pwa with context-specific communication skills (dalemans et al. 2010a). return to work participants expressed a desire to rtw as it provided them with a sense of purpose within their weekly routines, alongside opportunities for social participation with individuals who were not family and friends. the work environment provides pwa with opportunities to increase their communicative confidence, overall qol and maintain their social identity (callander & schofield 2013) as demonstrated in participants’ explanation of the importance of their work environment in maintaining social networks and sense of purpose. social support has been acknowledged as a crucial determinant in an individual’s ability to rtw (törnbom et al. 2019). results of the present study reiterated that the presence of support from the workplace allowed participants to rtw, whereby employers adjusted participants’ roles and working environments to suit their post-morbid abilities. the majority of pwa who rtw did so within the first 18 months post-incident (ntsiea et al. 2013) suggesting that the remaining 70% of participants may still rtw. however, increased amount of time post-incident, increased age and the diagnosis of moderate aphasia (aarnio et al. 2018) are factors associated with the reduced likelihood of pwa returning to work. this may explain why some of the older participants in the sample have not returned to work or did not want to rtw. in south africa, there is scant awareness of aphasia and limited accessibility within community environments (green et al. 2015), providing another possible explanation for the reduced rate rtw amongst participants. this finding highlights the importance of advocacy and awareness within the south african context, in order to improve pwa’s ability to rtw, in turn facilitating social participation and qol. communication partner training and increased awareness of aphasia are instrumental in improving pwa’s chances of successfully participating within the community, including returning to work (simmons-mackie et al. 2016; törnbom et al. 2019). results emphasise the value of work as an area of social participation, emphasising the need for slt’s to target pwa’s vocational communication abilities alongside their social communication skills needed in their work environment. speech-language therapists are encouraged to advocate the importance of returning to work for pwa, because of its correlation with improved qol and social participation (edwards et al. 2018; howe 2017). faith-related activities feelings of comfort and support in environments were found to be a strong determinant of participants’ choice of social engagements and perspectives of meaningful social participation. participants demonstrated minimal involvement within the community other than engagement in faith-related activities, such as church and bible study. one study found that the only stroke-related factor that continues to contribute to a decline in pwa’s social networks 6 months post-incident is aphasia severity (northcott, marshall & hilari 2016). however, results of the current study demonstrated the decline is not only because of the diagnosis of aphasia but also participants’ feelings and attitudes. faith-related activities provide individuals with a sense of purpose, feelings of inclusivity, and in turn provide social support (masuku & khoza-shangase 2018), thus possibly explaining participants’ choice of engaging with these particular situations, as opposed to others within the community. the relationship between spirituality, social participation and aphasia has not been extensively researched. however, faith-related activities have been recognised as opportunities for pwa to communicate with individuals outside their immediate environment (laures-gore et al. 2018). this was supported by participants’ descriptions of faith-related activities as an area of social participation, whilst highlighting the importance of feeling comfortable and supported within social situations. the value of faith-related activities in south africa is evident within this sample, as participants explained a heightened sense of purpose to help others, whilst strengthening their faith post-incident. this sense of purpose for pwa has not specifically been linked to spirituality or faith in literature, but rather to feelings of gratitude for surviving and a willingness for engagement in meaningful activities (törnbom et al. 2019). this difference may be attributed to the contrasting perceptions and understanding of illness and incidents such as stroke, across geographical regions and culture. literatures originating from hics explain that the illness is predominately attributed to medical reasons. however, in lmics, such as south africa, faith plays an undeniable role in individuals’ definition of illness (nweke & eze 2019). additionally, pwa describe feelings of confidence and support within their faith community, in which they feel comfortable socialising with others (masuku & khoza-shangase 2018) as demonstrated in this study. this finding emphasises the influence of cultural and contextual factors in shaping participants’ perspectives of social participation. hope is fostered in the presence of social support and within interpersonal relationships (bright, mccann & kayes 2019), highlighting the influence that significant others and faith have in facilitating increased feelings of positivity in participants, resulting in improved social participation and qol. speech-language therapists must acknowledge the possible role of faith in facilitating motivation and hope, whilst attempting to empower participants’ ability to successfully communicate in social situations they consider meaningful. participants’ perspectives from the current study, alongside previous literature, stress the importance of considering faith-related activities when setting goals and attempting to implement holistic intervention (masuku & khoza-shangase 2018). value of rehabilitation services rehabilitation services, including st and physiotherapy, were identified as valued forms of social participation in participants’ weekly routines. literature has identified a lack in the ability of rehabilitation services to support and target younger pwa’s parental roles (manning et al. 2017). contrastingly, the results of this study indicated home programmes were often completed with the help of the pwa’s child and significant other, in turn providing opportunities for engagement within the home environment. the results shed light on the possible positive influence of rehabilitation services, specifically speech-language therapy, in social participation. participants described positive relationships with their slts, where they appreciated opportunities for conversation practice within therapy sessions. positive therapeutic relationships with slts are recognised across literature, as pwa often feel understood, empowered and supported by their slts (lawton et al. 2018; manning et al. 2017; northcott et al. 2018). social connections and relationships often form between client and slt, because of the interrelated nature of targeting improved functional communication, whilst considering the clients’ emotional well-being and implementing relational practices, such as getting to know one another and carrying out ‘small talk’ (lawton et al. 2018; northcott et al. 2018). the findings from this study demonstrate the role of slts in facilitating social participation, particularly in the first few years of recovery, as well as their personal role as a member of their client’s social network. the benefits of positive therapeutic relationships were supported in this study, where participants explained increased motivation and psycho-social well-being (lawton et al. 2018). however, south africa is made up of a linguistically diverse population resulting in a shortage of slts who are proficient in clients’ first language, as the majority of slts only speak english and afrikaans (barratt et al. 2012). the language barrier and the shortage of slts highlight the possible challenge in creating meaningful relationships between slts and their clients, as well as the difficulty in achieving effective person-centred care in south africa. community-based service delivery, specifically group therapy, is encouraged in south africa because of its provision of creative and culturally-rich stimulation that acknowledges context, whilst targeting a number of individuals in an authentic social manner; thus addressing the lack of appropriate st services (penn 2014). conversational aphasia groups have demonstrated significant improvement in pwa’s communication abilities, whilst providing an opportunity for authentic social participation with others of similar circumstance (penn & armstrong 2017). implementation of group therapy may significantly improve pwa’s social participation, through the development of new social networks and increased social support whilst targeting their communication impairments (howe 2017; penn & armstrong 2017). limitations of current study the first researcher is an expatriate who is proficient in english, with some understanding of afrikaans, thus making it difficult to interview a complete profile of south africa’s diverse population without including a translator. it is limiting that the current sample does not represent the full diversity of the south african context. however, small sample sizes are prevalent in qualitative research as smaller sample sizes often represent a large quantum of in-depth information collected (nelson 2013). nevertheless, this study may contribute to the expansion of evidence regarding social participation in lmic (pike et al. 2017). the researcher met with the participants only once and had limited verbal interaction with them prior to the semi-structured interviews, possibly leading to participants’ sharing less. longitudinal and multiple investigations of pwa’s perspectives may allow for greater understanding of the barriers and facilitators of social participation experienced, over an increased period. study findings shed light on what pwa may perceive as successful social participation, as well as the possible areas of social participation specific to this context, such as relationships with family, friends, slts and members of their faith community. due to the heterogeneity of pwa in south africa, similar investigations must continue and be broadened to include larger and more diverse samples, to inform person-centred care and optimise functional outcomes post-incident. conclusion it is clear that feeling included, comfortable and supported can shield an individual from experiencing social isolation (elloker & rhoda 2018), in turn allowing pwa to experience improved confidence in communication and social participation. slts play a unique role in the implementation of community-led intervention in south africa, which may significantly improve pwa’s social participation. the involvement of significant others and community members, such as family and faith leaders in intervention is encouraged alongside the introduction of advocacy and awareness programs (watermeyer 2019) to improve feelings of comfort and conversational confidence. it is the role of slts to advocate for increased communication partner and vocational training, allowing improved accessibility for pwa and facilitating social participation. speech-language therapists must support communication abilities needed for pwa to engage in social activities of interest and value, leading to meaningful social participation (woodman et al. 2014). the findings of this research demonstrate the importance of optimising pwa’s increased feelings of motivation and hope through the stages of recovery, and the role of person-centred care in achieving successful social participation for pwa. acknowledgements the authors sincerely thank the participants of this study. competing interests the authors have declared that no competing interest exists. authors’ contributions n.m.s. and b.s.p. conceptualised the project. n.m.s. collected, analysed data and co-wrote the article. b.s.p. analysed data and co-wrote the article. e.k. and r.e. co-wrote the article. funding information this research received no specific grant from any funding agency in the public, commercial or 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experiences and views of community-dwelling stroke survivors’, disability and rehabilitation 36(24), 2031–2043. https://doi.org/10.3109/09638288.2014.887796 world health organization [who], 2001, international classification of functioning, disability and health, icf, who library, geneva. abstract introduction theoretical framework and methodology of the study findings discussion conclusion study implications acknowledgements references about the author(s) marlene f. le roux centre for disability and rehabilitation studies and afrinead, department of global health, stellenbosch university, cape town, south africa citation le roux, m.f., 2022, ‘key considerations for an inclusive framework for youth with disabilities in post-apartheid south africa’, african journal of disability 11(0), a954. https://doi.org/10.4102/ajod.v11i0.954 original research key considerations for an inclusive framework for youth with disabilities in post-apartheid south africa marlene f. le roux received: 27 sept. 2021; accepted: 28 apr. 2022; published: 11 nov. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the south african constitution asserts that persons with disabilities must have equal access to opportunities in society; however, the realisation of this mandate has remained a challenge. there is a need to create contextually relevant, inclusive structures that support equal access to opportunities for persons with disabilities in society. objectives: this article reflects on and highlights key considerations for an inclusive framework that facilitates access to opportunities for youth with disabilities in south africa, which emanated from a study that explored how ongoing interaction with the performing arts can facilitate social and economic inclusion of youths with disabilities. method: the study adopted a qualitative research approach, using critical ethnography. primary data were obtained from three focus groups with a total of 20 youth with disabilities who have attended performance events, as well as an in-depth interview with a disabled performer. results: the facilitation of access to equal opportunities for youth with disabilities must occur at a multidimensional level, involving both personal and systemic changes and levels of support. complex barriers linked to the apartheid legacy also exist, some of which include access to resources and reduced self-determination, whilst positive factors such as internal resilience and skills development function as promising predictors of inclusion. conclusion: contextually relevant, disability-inclusive structures in south africa must confront and address how youths with disabilities are uniquely impacted in present times by south africa’s history. contribution: the voices of youths with disabilities make a key contribution as their experiences must inform these inclusive structures which have the potential to enhance access to equal opportunities for them at both personal and systemic levels. keywords: inclusive development; disability; youth development; empowerment; humanity; dignity. introduction the united nations sustainable development goals (sdg 2030) and the united nations convention on the rights of persons with disabilities (uncrpd 2006) advocate for the inclusion of persons with disabilities in all spheres of society (jolley et al. 2018). the south african constitution asserts that persons with disabilities must have equal access to education, employment, basic services and reasonable accommodation; however, relatively marginal changes have been made within societal structures to effectively provide equal access to persons with disabilities (ngwena & pretorius 2012). the understanding of disability in this article is aligned to the un convention on the rights of persons with disabilities and the international classification of functioning (icf) (who 2001) definition of disability, which steps away from the impairment-focused deficit model of disability. therefore, i define disability as: [t]he loss or elimination of opportunities to take part in the life of the community, equitably with others, which is encountered by persons having physical, sensory, psychological, developmental, learning, neurological or other impairments, which may be permanent, temporary or episodic in nature, thereby causing activity limitations and participation restrictions within the mainstream society. (stats sa 2011:13) the given definition clearly heralds the need to address this loss of opportunities for people with disabilities (pwds). historically, pwd have been marginalised globally and are currently still experiencing marginalisation despite various international and governmental policies and treaties that advocate for their rights (sa’ar & aratan-bergman 2016). they are prevented from accessing healthcare, education and economic opportunities on an equal basis with other members of society (albert & hurst 2004). they are often viewed through a medical deficit lens that identifies whatever impairment they have as the reason pwd are excluded from accessing equal opportunities and, in some instances, they are even perceived as being a negative influence on society (dossa 2008). the world report on disability (2011) stated that the african region holds a higher number of persons with disabilities that are moderate to severe, most of whom are in the younger generation, under 60 years of age. adding to this complexity is the high prevalence of poverty and governments’ incapacity to adequately address these challenges in a manner that facilitates access to opportunities and the inclusion of youth with disabilities within society, which often leads to further marginalisation of this vulnerable group. there is a need to create inclusive structures that support equal access to opportunities for youth with disabilities in society. this article presents key considerations for creating an inclusive framework within societal structures by facilitating access to performing arts opportunities for youth with disabilities in south africa. this has the potential to support personal growth and social inclusion of youth with disabilities. within south africa, historical divisions along racial and gendered lines created major social divisions during the apartheid era. people with disabilities were further oppressed and had limited access to public spaces and opportunities (ngwena & pretorius 2012). the patterns of inequality created during apartheid contributed to structural and systemic barriers to inclusion for pwd, which are still experienced to date. persons with disabilities currently make up more than 7.5% of the nation’s population but have seen little change in the area of access, for instance, to opportunities for economic and social participation (bam & ronnie 2020; ebrahim et al. 2020; ned & lorenzo 2016). many of this vulnerable sector live in urban townships or rural areas where services are especially difficult to access and, despite the progressive element of the constitution, have been left behind (lorenzo 2008; ned & lorenzo 2016). this includes youths with disabilities. young people under the age of 35 make up 66% of the south african population (hanass-hancock et al. 2018). these young people generally encounter a lot of structural and attitudinal challenges within society and are even more challenged by societal and systemic barriers (hanass-hancock et al. 2018). youth with disabilities require adequate care, medical equipment and rehabilitation, accessible buildings and transport, as well as emotional support from family members and care workers (le roux 2018). these factors are single or synergistic satisfiers of human needs for social and economic development and would facilitate better inclusion of youths with disabilities in our society (le roux 2018). the national youth policy (sa, wyp 2020–2030) outlines a youth development strategy for south africa (department of women, youth and persons with disabilities 2020), creating an avenue for youth with disabilities to be represented and included in development opportunities through the ministry for rural development and land reform. this is equally aimed at enhancing the use of local resources to facilitate inclusive opportunities for youth with disabilities (lorenzo & motau 2014). artscape and the many programmes it offers for young people and youths with disabilities, for instance, is one such local resource that can be used to facilitate the inclusion of youths with disabilities (le roux 2018). the present situation highlighted here has informed this study. this article reports on participant narratives on key aspects of inclusion which can facilitate access to opportunities and social inclusion of youth with disabilities. this emerged from a study that explored how interaction with the performing arts may facilitate the social and economic inclusion of youth with disabilities (le roux 2018) by fleshing out their marginalised position within the context of a post-apartheid south african (le roux 2018). theoretical framework and methodology of the study this section briefly explains the theoretical framework, methodology and research design followed in the collection, organisation and analysis of data and positions the researcher within the study. there are four theoretical frameworks that guided the study: feminist ethics of care (gouws & van zyl 2015; kittay 2011; yuval-davis 2006), which advocates for a collective approach to address injustices based on gender; models of disability (langtry 2010; moyne 2012) (medical, charity, social, rights-based and affirmative); assisted exploration of the definitions of disability holistically; intersectionality (crenshaw 1989; yuval-davis 2006), which supported the identification of the multiple intersecting systems of oppression emanating from my participants’ experiences, history and context; and human scale development (max-neef 1992), which asserts that all fundamental human needs are culturally and historically constant and that humans share a deep need to satisfy themselves (le roux 2018). research has shown that the lived experience of disability is mostly different for male and female people, and the researcher, as a female person with a disability, has lived experience of this difference. the gaze that is cast upon the female disabled body often breeds further marginalisation and sometimes even violence. in addition, the study has an emancipatory element of opening up marginalised spaces and the discourses within those spaces. therefore, as advocated by the feminist ethics of care and intersectionality, it became relevant to ensure that the voices of young women with disabilities were equally represented, to explore how these young women experienced disability and access within their own contexts. it was aimed at bringing out the female narratives and the intersecting locations of their lives to repudiate assertions and assumptions based on their gender and/or gender roles and to address the challenge of inadequate role models for women with disabilities. this emancipatory strategy was carried through in the methodology by ensuring representation across both men and women during recruitment and sampling. the theories used in this study – intersectionality, ubuntu, feminist ethics of care and the max-neef theory of needs satisfaction – all validate the given facts. they include empathetic understanding and care, interconnectedness and inter-relatedness, participation, solidarity, community and reciprocal commitment to each other’s well-being. these are the foundational concepts of this study, as youth with disabilities seek a space of recognition of shared humanity, caring social relationships and equal participation on all levels of beingness. study context, methodology and research design study participants were recruited from the cape flats, which is an area located between the city centre of cape town and cape town international airport. the cape flats consists of predominantly black townships, ‘coloured’ (formerly cape coloured, a person of mixed european [‘white’] and african [‘black’] or asian ancestry, as officially defined by the south african government from 1950 to 1991) ghettoes and shantytowns. this area was the place to which most black people were relocated, and migrant labourers also settled there after other areas were declared ‘whites only’ during apartheid and the group areas act was passed. this area was commonly referred to as ‘the dumping ground’, which is characterised by high levels of poverty and, historically, the marginalisation of youth (south african history online 2021). methodology a qualitative research approach was adopted using a critical ethnographic research design. in essence, critical ethnography explores the culture, community and daily circumstances of participants, considering what is currently occurring and possibilities for the future (thomas 1993). boylorn and orbe (2014:15) asserted that critical ethnographers are interested in the ‘politics of positionality’, where researchers expose their own privileges in addition to their marginalisations and ‘take responsibility for [their] subjective lenses through reflexivity’. critical ethnographers aim to explore, understand and interpret the dynamics within a group, identifying past and present patterns of injustice that may have consequences for current life experiences. finlay (2006) agrees with richardson’s (2002) evaluation of ethnographic research. both authors advocate offering both ‘scientific’ as well as ‘literary’ aspects of research and using diverse ways to present ethnographic research. both argue that reflection on the personal, emotive narrative is as important to evoke as the so-called positivist, typical rendition of what scientific knowledge is or should be. thus, the researcher is located as a potential influence within the research process and must therefore explore any subjective bias they may have. as a black woman with a disability, and as someone from a historically marginalised community, i am aware of my closeness to the data. therefore, reflexivity is a valuable tool for me to evoke the literary aspect of my research and draw from critical ethnography and my positionality in this study, to confront previous practices of discrimination and to address this by ensuring an authentic representation of the voice of my study participants that aligns to their subjective experiences of access to opportunities as youth with disabilities (le roux 2018). therefore, i position myself in the next section. positioning the researcher i am a woman of mixed race from a rural town, wellington, south africa. i contracted polio when i was three months old. this is because i grew up in a segregated community under apartheid, hence the white clinic refused to administer the polio drops to me as a mixed-race person. this is because mixed-race people could not receive vaccination in any clinic segregated for white people only. my family was poor and struggled socio-economically; however, plenty of love, care and support was given to us as we grew up. this love and care, however, could not protect me from the systemic discrimination and marginalisation i experienced growing up. as a 54-year-old woman today, i have first-hand knowledge of the impact of these deficit systems on the growth and development of young people. i had neither access to a special needs school nor to accessible transportation, as there was no public transportation for persons of mixed race in the rural town of wellington. for example, when considering university in the 1980s, i enthusiastically sent an application to the music faculty of one of the top higher education institutions in the country, with a very excellent art programme to be an opera singer, only to be turned down because of my impairment; they stated that they had no space for a disabled opera singer. this is one reason that the theory of intersectionality is important to me, and even more so as it has truly played out in my own life. despite this setback, i was taught to push and not give up by my family and to trust in my own will and capacity to succeed. so i learnt to improve my understanding of people and the arts, especially how to contribute to resilience for youth – with and without disabilities – in my community and at all levels of society, encouraging them to pursue their dreams. my experiences have further strengthened my understanding of the key issues of access that persons with disabilities have to face. i align with shah’s (2006:208) assertion that young people are ‘active social agents, able to articulate their own experiences and express their views’. this has informed the work i do with youths with disabilities. therefore, in this study, whilst narrating my marginalisation, i equally acknowledge my methodological privilege as a disabled researcher. i am positioned as ‘a research tool’ to consciously elicit the narratives and experiences of inclusion by these young pwds (shah 2006:218). this supported me in identifying current barriers inherited from the history of systemic oppression and collectively identifying sustainable, contextual ways to address them and to facilitate inclusion. study population the study population are youth with disabilities who have attended at least one or more events at the artscape theatre. this sample also includes youth with disabilities from historically disadvantaged communities in cape town (cape flats area). youth comprise young people between the ages of 18 and 35 years of age (south africa youth commission act 1996), so this guided the categorisation of youths. participant sampling, inclusion criteria a purposive sampling strategy was used for the study. all participants were youth, aged between 18 and 35 years, as defined by south africa’s youth commission act (1996). they self-identified as male or female and had self-described sensory, mobility, mental or psychosocial disabilities. they are bilingual, as the researcher needed to conduct the interviews in both english and the participants’ spoken local language. recruitment strategy the recruitment of participants occurred across three different settings and there were three focus groups and one interview held, as described here. the cape flats comprises poor, disadvantaged, black and mixed-race communities in the western cape province, south africa – i contacted disability organisations because as a person with a disability, i am familiar with these organisations and their work with youth with disabilities. the organisations approached are woman’s achievement network for people with disabilities (wand) – they work with young women with disabilities; unmute – a professional dance company working with young pwd; stigting vir bemagtiging deur afrikaans (sba) – a cultural organisation that brings young pwd to the theatre; and attendees of the unmute artsability festival. these organisations then contacted their members in the cape flats area and informed them about the research. they gave my contact details to people who were interested. some had access to phones and called or sent a message to me. i then called them back to explain further. next, because some of the interested youth did not have phones, i organised transport with the help of these nongovernmental organisations (ngos) to collect all the youths who were interested in participating and bring them to a venue where we met and i clarified and explained more about the research, answered all their questions and sought their consent, which they gave by signing the consent forms. two additional groups from training institutions were also identified and invited because students from these schools often attend performances at artscape. the consent form was sent to the principal, who gave it to the learners, and those who were interested contacted me. therefore, the three groups and one individual recruited were as follows: six learners from the tertiary training college for the deaf attending a theatre performance as audience members. seven grade 12 learners from a learners with special education needs (lsen) school who attended a production of an afrikaans setwork 3 and were facilitated by the ngo sba. six disadvantaged community youth (individuals who have finished school and were currently at home and unemployed, recruited through ngos as discussed here). one individual interview which was conducted with a performer with a disability at artscape. focus group sessions were held with the three groups. the focus group discussion was specifically chosen over individual interviews because of the vulnerability of these young pwds. being in a group meant that they could support each other to speak and share stories; in this way, peer support was encouraged. in addition, because of the isolation they often experience as a result of their disability, they had few social interactions. therefore, being in a focus group meant that they could socialise whilst participating in the research. data were also collected through a document analysis from the artscape universal access and design task team’s database and two in-depth individual interviews with the black disabled female performer. in addition, three focus groups were conducted with a total of 19 participants from the schools and the youth with disabilities from disadvantaged communities. the researcher’s reflective journaling of the research process was used as secondary data to support analysis. data management and analysis all data transcripts and field notes used in this research are not in the public domain. all data were stored by the researcher on a password-protected computer file, and it will be stored for five years as stipulated by the university of cape town. data analysis began with the transcription of all digitally recorded data. creswell (2007) suggested that in reading through data and gaining familiarity, one can start the process of understanding it. thematic analysis, as described by bowen (2009) and braun and clarke (2006), was used to identify recurring themes and patterns in the focus group interactions, specifically focusing on a critical ethnographic concern with patterns of social injustice. braun and clarke (2006:78) viewed thematic analysis as a flexible tool for research, ‘which can potentially provide a rich and detailed, yet complex, account of data’. thematic analysis enables researchers to make sense of data in accordance with their specific focus and within a broader methodological framework (braun & clarke 2006). the researcher established a manual coding system to identify recurring themes and patterns emerging from the data and effectively categorise responses (bowen 2009; braun & clarke 2006; marshall & rossman 2006). any additional comments were included as a means to contextualise focus group transcripts. review and constant comparison enabled the researcher to place codes into categories and subcategories and the verification of themes and categories was carried out up to the point where saturation was reached. pseudonyms were used to identify participants and their responses, ensuring that confidentiality and privacy remained uncompromised. the documents’ review outcomes were analysed using the statistical package for social sciences (spss version 24, ibm corp. 2016). a detailed discussion on the study methodology has been published in a separate article (le roux, kathard & lorenzo 2021). ethical considerations ethical approval to conduct the study was obtained from the human research ethics committee of the faculty of health sciences, university of cape town (clearance number: hrec 6001/2016). participants were informed about the nature of the study and that it is a low-risk study but any risk that arises will be minimised. they were handed informative handouts and given opportunities to ask questions for clarification through question-and-answer sessions before giving consent. they were informed that could withdraw at any time without any negative consequences. data were anonymised to protect the identity of study participants and enhance confidentiality. all participants were treated with dignity and respect (le roux 2018). the following section presents participant narratives of inclusion, what they identify as key factors that they believe facilitate their access to opportunities and the challenges they experience as young people for inclusion. findings interactive spaces and social connections participants identified the very important need to be able to fit into society as much as any other young person as a basic right they should be able to exercise. the capacity to go out and be socially included is a necessity and one which they believe begins with the creation of opportunities and having receptive attitudes. the participants from the training institution focus group also gave an example about how the arts can create spaces of interaction: ‘for me it’s a very fun and exciting space to be in because you interact with different people and you always live with new friends and stuff. and because i’m a person who likes people, i like to, i always make new friends but i’m never the one who’ll go to a person and be like them, but somehow people always find a way in finding me.’ (chidera, student, theatre attendee, focus group [fg3], 2017:36) ‘so by creating such opportunities for young people, i think it does start changing the way we live and our societies. it starts giving young people hope and it makes them realise that they have the skills, they have the tools but it’s just a matter of working on them.’ (samantha, community member, interview, march 2017) ‘arts and culture – well, that space definitely does make it easier to transition into that space, because a lot of us who are confined within our homes or who don’t go out, it’s harder for them to transition into society as a whole. so arts and culture make you get used to the idea that there are people and you have to integrate yourself to society and it’s, as much as there is limit to the space but you can always be creative around because there are times, if you can’t get into a concert then we can sit outside and have our own thing, you know.’ (abigail, student, theatre attendee, fg3, 2017:38) positive identity and agency these opportunities should be facilitated by consciously supporting youth with disabilities to grow their identity and sense of self. one participant stated that this positive sense of self helps to negate a history of marginalisation and contribute to a sense of agency for young people: ‘[i]f you sit and wait for funding to come to you, you are going to wait forever. i was placed in that position where i was forced to start creating opportunities for myself to be able to have work.’ (yinka, student, theatre attendee, fg3, 2017:13) parental support was highlighted by participants as a critical factor that contributes to their confidence and agency. one participant from the focus group who frequently attends events and performances stated here that the values she carries were instilled by her parents, whilst another participant from the training institution felt inspired to support youth to respond to challenges and build their self-agency by creating an organisation: ‘the values that they instilled were always that you don’t wait for someone to hand something to you, you go out and you do something for yourself.’ (samantha, community member, interview, 2017:8) ‘then it kicked back home that i need to start an organisation for pwds but mainly focus on the young people at school, because growing up with these challenges, they need to face the challenges that’s out there because accepting the fact that you are disabled, you can’t go there and you can’t do this because of all these stumbling blocks, it’s not gonna help, it’s just keeping you back.’ (chidera, student, theatre attendee, fg3, 2017:36) participants believe that support systems, which contribute to agency-building for youth with disabilities, will motivate and inspire them to realise they can reach higher and aim for more, as exemplified by a deaf learner in high school. the school learners were all white people or mixed race. the deaf white learners were more affluent and clearly voiced their career aspirations: ‘my goal is to go and study next year – it programming – and then i would like to be a speaker in parliament and to work within the deaf community.’ (howard, student, theatre attendee, fg2, march 2017:8) contrary to this, many of the mixed race and black learners were from disadvantaged, low socio-economic communities. they were hesitant to discuss their career options and some aspired to become skilled labourers, whilst others looked towards a career in the arts, although they still battled with a lack of confidence and fear: a jewellery-maker, [although] my main thing i want to do is to build houses.’ (brandon, student, theatre attendee, fg1, march 2017) ‘okay, now i sing a lot. i go out to concerts, i perform in churches, i perform in all that other stuff but now i do less. i don’t know what happened, but i suddenly lost confidence and suddenly now i have so much fear that i never had when i was a teenager, but when it comes to music, i’ve got much confidence in it.’ (blanche, student, theatre attendee, fg3, 2017:25) on the other hand, some barriers to inclusion and access to opportunities were also identified by participants. some of the challenges stemmed from personal challenges, and some were systemic and structural, but all impacted on their capacity to access opportunities in one way or another. mobility challenges the youth with disabilities who participated in the study identified certain challenges that were barriers to inclusion; public transportation was identified as a major challenge to accessing opportunities and inclusive spaces. the challenge was not only related to accessing transportation, but even getting to the taxi rank from their houses was often very challenging and strenuous due to the condition of the public roads within their environment: ‘the challenge is i can’t go alone to take the transport because of the roads, and also it’s not wheelchair friendly for me to be able to travel alone. i need to take a bus and golden arrow; sometimes they have an issue with me using the bus, then they want me to pay for the wheelchair and for myself as well.’ (chidera, student, theatre attendee, fg3, 2017:19–21) ‘my mode of transportation is dial-a-ride, which … means that i have to book, always have bookings in advance. so if i want to go somewhere it has to be 7 days in advance for me to make the booking. so if there comes up an event tomorrow, i can’t attend because i haven’t made prior bookings to go to the event.’ (dylan, student, theatre attendee, fg3, 2017:21) access to resources another dimension that emerged from the findings of the study, based on participant narratives, pointed to the impact of south africa’s history on youth with disabilities in terms of resources required for access. one alternative to problematic public transportation is privately owned transportation. most of the white youth could access privately owned transportation, while black and mixed-race youth struggled to do so. ‘currently we are busy building up my own car so that i will be able to drive here on my own next semester.’ (koos, student, theatre attendee, fg2, 2017:7) participants also felt that the impact of this resource constraint even influenced their experience of inclusive spaces. this is because even when structures are inclusive, many people who manage these spaces lack disability sensitivity, and therefore often do not realise the need for additional accommodation for persons with disabilities. ‘people with disabilities aren’t being catered for; maybe you could afford those front row tickets, but because that isn’t accessible, now they put you here on this balcony where you have to look down. the security itself don’t know the alternative entrances are for pwds. so now you sit there whilst everyone is in a hurry and you are waiting for someone from another side to send messages of where i should go in.’ (dylan, student, theatre attendee, fg3, march 2017:27) ‘i think most of them [youth with disabilities] wouldn’t attend things when there was something but i’m always there, because there’s always a venue with the stairs, a venue with the smaller door, so they [youth with disabilities] can’t be accommodated.’ (chidera, student, theatre attendee, fg3, 2017:36) striving to fit in some challenges were specific to certain groups of participants. the learners from the high school for the deaf and the tertiary institute for the deaf struggled with the anxiety of having to engage with hearing people, within systems and structures that are more exclusive rather than inclusive of them. although some deaf people have acquired the skills to interact in a world more attuned to hearing people, the anxiety also occurred at a personal level: ‘when we are now outside, working and done with our education, how are we going to communicate with the others, with the hearing?’ (brandon, student, theatre attendee, fg1, 2017) ‘some deaf people can mix with hearing people and then some deaf people do not know the skills and techniques required to communicate with hearing people. so some deaf people can do it, they can do it, but i just do not know how to communicate with the hearing.’ (eric, student, theatre attendee, fg2, march 2017) despite these highlighted challenges, participants believe that inclusive structures and systems as well as their deeply held aspirations are necessary for successful inclusion. the need to prove themselves despite these challenges is reflected in the following statement: ‘no, i think that one is a person showing the world that even if i am disabled, let me show them that i can do it, you can do it.’ (brandon, student, theatre attendee, fg1, 2017:21) ‘now i can showcase my hobby to a lot of people, and that will also contribute into changing the mindsets of the people who think that disability is also in the head, because when they see you they like, “agh, you stupid, you know, you can’t think” … i’m going to showcase the work that i’m doing, my hobby, because designing is a hobby for me; i’m not a professional designer, i’ve never been to designing school, but i love fashion. and people should see that we can also dress up, like make up, like girly stuff, and we like the neatness, you know. it’s not just about, agh, we dressed because we have to get dressed, you know? there is more to us than what meets the eye!’ (chidera, student, theatre attendee, fg3, 2017:38) the given section expands on the outcomes of the study, further synthesising the key findings above to highlight the key tenets of an inclusive framework from the participant narratives above. discussion ‘people will always act different to what they don’t know, because now i understand why able bodies don’t really consider pwd, because they just seem like, “agh, you know, that person, i don’t really know what they are about.” it’s because they don’t understand you, but if a person understands you and has a better understanding of who you are, then they will be more open to what is happening around them … so that people know that we are there, we are not going anywhere, we are not something that’s gonna vanish into thin air anytime soon, so they must get used to us and get to know us.’ (chidera, student, theatre attendee, fg3, march 2017:37) the given quote by one of the youths with disabilities reflects the general sentiment expressed by the study participants. in consideration of a more disability-inclusive framework that consciously takes note of context and holistic engagement of the youth with disabilities within society, there are certain key factors that have emerged from participant narratives that would contribute positively to support a contextually relevant and appropriate disability-inclusive framework within the south african context. these factors can be synthesised into three main areas discussed here. enhancement of personal capacity, agency and skills development for youth with disabilities there is a worldwide crisis of youth unemployment, including in south africa. critical to this is the social isolation and marginalisation of youth with disabilities, who consist of a staggering 71% of people who are unemployed in south africa (statistics south africa 2011). the south african government identified youth with disabilities as a vulnerable group and a target population for redressal more than a decade ago, but they still do not constitute a government priority (engelbrecht, shaw & van niekerk 2017). in a study that explored the availability of work transition programmes for youth with disabilities in south africa, authors identified inadequate research that focuses on this group, with little data disaggregated to highlight information on their status. these include the supportive and inclusive structures needed to enable them to realise their aspirations (engelbrecht et al. 2017). even more critical is the need to hear from the youth themselves, in support of their agency and autonomy. research that involves youth with disabilities, which elicits their narratives, is key to challenging societal normative assumptions that impact negatively on the creation of inclusive structures to integrate youth with disabilities into all aspects of society (teachman et al. 2018). this supports the given quote by a participant who insists that one of their biggest challenges is that society is largely unfamiliar with and distanced from the realities of youth with disabilities. this can be addressed through focused research to elicit their narratives. supporting and empowering families to inform sustainable change disability is not only a physiological, societal and systemic issue but also a deeply personal and emotive issue. participants in this study speak about a personal, internal resilience (daly 2020) that exists, making them strive to learn new skills to sustain themselves despite all odds (le roux 2018). families are key support systems for resilience (ohajunwa 2019) and participants often referred to the role their families or parents played in their lives, helping them to become resilient. the community-based rehabilitation framework (who 2010) recognises the key and pivotal role which families play when it comes to the inclusion of pwd. community based rehabilitation (cbr) advocates for the ongoing inclusion of families and communities in programmes planned for pwd as part of an inclusive framework. although they battle fear, anxiety, social stereotyping (shah et al. 2015) and oftentimes a lack of self-esteem and confidence related to social interactions (max-neef 2009), due to long-term stigmatisation (mclaughlin, bell & stringer 2004) and abuse that they experience, there is a resolve to keep aspiring, supported by their families (le roux 2018). daly (2020) conducted an integrated literature review of resilience in the fields of psychology, sociology, philosophy, education and nursing. one of the key outcomes of the study is that closeness to resources is vital to inclusion and builds resilient wellbeing for youth with disabilities. the family is one such resource, which must be utilized through empowering families as a tool for inclusion of youth with disabilities. effecting systemic and structural changes for inclusion of youth with disabilities one of the needs identified by youth with disabilities is the relevance of systemic and structural accommodation of their needs. closely linked to this is the importance of general disability sensitivity or awareness to support societal inclusion and access to opportunities. disability awareness would speak to negative attitudes suffered by youth with disabilities, even within inclusive spaces, as described by a participant here. disability is a multidimensional concept, and the lived experience of it is influenced by systematic differences based on gender, disability, race or ethnicity and socio-economic status (shogren & shaw 2016). the historical imbalances imposed by south africa’s past constitute certain barriers for these young people. youth with disabilities from historically disadvantaged communities perceive their white counterparts as having more access to resources that facilitate their inclusion into society than they do (le roux 2018; roberts 2004). this is especially seen in the area of accessible transportation, which is key to accessing opportunities for schooling, employment, recreation, places of worship and many other spaces of advancement. an inclusive disability framework must cater for all areas of youth development – physical, cognitive, social, emotional well-being and learning (lee & ho 2018). a holistic approach that accounts for all aspects of their humanity (ohajunwa, mji & chimbala-kalenga 2021) is key to the development of self-determination, which is a significant predictor of post-school success for youth with disabilities (shogren & shaw 2016). one sees the impact of the legacy and history of south africa’s apartheid on the self-determination and aspirations of youth with disabilities who come from communities that were subjugated during this era. redress is an important factor to inform the inclusion of youth with disabilities. there is a need to recognise that all youth with disabilities are not equal in terms of resources to access opportunities and their sense of self. therefore, systems must be set up to further assist youth with disabilities from disadvantaged communities to be able to dream and achieve. daly (2020) agrees with the summation above, stating that proximity to resources is key to accessing opportunities and building resilience of the youth with disabilities to facilitate inclusion. related to a sense of self, meiring (2015:5) focuses on embodiment within the southern african context. he emphasises the importance of taking cognisance of the bodily experiences of black people in south africa and having a deep sensitivity for the profound impact of colonialism, apartheid and even post-apartheid on the black body. this is applicable to youth with disabilities, and there should therefore be a conscious move to address this deficit within an inclusive framework. meiring (2016) discussed the notion of ‘embodied sensing’, stating that all people have the challenge of sometimes being unable to make meaning of their worlds with words: we all embody this sense of meaning, even when we cannot explain it with words. one challenge is that pwds are often told by able-bodied people who they are and what to believe about themselves. meanwhile, even if they cannot speak, or are hesitant to speak, youth with disabilities are much more than their disabled bodies; they also have this embodied sense of themselves and should be given the right to define for themselves who they want to be. harnessing this sense of embodiment to inform the inclusion of youth with disabilities is critical. it will entail creating unhurried spaces of dialogue and authentic, nonthreatening engagement that allows for self-expression. as this study has shown, artscape and ngos who bring youth with disabilities to interact and attend performances can provide a space for these facilitated dialogues. conclusion globally and in south africa, youth with disabilities are not prioritised as they should be by governments. although youth constitute most of the working population in south africa, they still experience marginalisation and minimal access to opportunities at systemic and personal levels, in part because of south africa’s past injustices and a general lack of disability sensitivity within society. from the narratives of inclusion that emanated from youth with disabilities in this study, three main factors that contribute to an inclusive framework have been identified. they are enhancement of personal capacity, agency and skills development for youth with disabilities, supporting and empowering families to inform sustainable change and effecting systemic and structural changes for the inclusion of youth with disabilities. study implications finally, based on the research presented, this article makes the following recommendations: promotion of societal systems and structures that actively facilitate the inclusion of youth with disabilities. accessibility to all public spaces should be ensured, including places of social interaction, to facilitate inclusion. adopt inclusive practices at all levels of society, with government, academia and ngos providing disability sensitivity programmes and training, so that even when inclusive structures are built, managers of these structures are aware of the need for further accommodation as required. the experience of youth with disabilities from disadvantaged communities specifically, is informed by race, gender, socio-economic and spatial divisions of an apartheid legacy. therefore, in the interest of equity, additional government funding and training must be made available to support these youth 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studies 13(3), 193–209. https://doi.org/10.1177/1350506806065752 abstract introduction methods results discussion conclusion acknowledgements references about the author(s) tebogo g. motaung department of sport rehabilitation and dental science, faculty of science, tshwane university of technology, pretoria, south africa terry j. ellapen department of sport rehabilitation and dental science, faculty of science, tshwane university of technology, pretoria, south africa yvonne paul department of sport rehabilitation and dental science, faculty of science, tshwane university of technology, pretoria, south africa citation motaung, t.g., ellapen, t.j. & paul, y., 2022, ‘the consequence of head-loading on the neuro-musculoskeletal health of the ilembe district youth of kwazulu-natal’, african journal of disability 11(0), a1039. https://doi.org/10.4102/ajod.v11i0.1039 original research the consequence of head-loading on the neuro-musculoskeletal health of the ilembe district youth of kwazulu-natal tebogo g. motaung, terry j. ellapen, yvonne paul received: 10 mar. 2022; accepted: 31 aug. 2022; published: 14 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: head-loading, as a mode of transporting food, water and firewood, is a longstanding tradition assigned to female south african youth and has been associated with adverse health consequences. objectives: this study determined the impact of head-loading on the neuromusculoskeletal health and proprioception of female south african youth. method: this study comprised a counterbalanced, within-subject, single-factor experimental design which compared the changes that occurred when the same independent variable (head-loading) within two homogenous groups was measured in terms of the dependent variables (outcomes: neuromusculoskeletal pain and proprioception) at two time periods, before and after the introduction of the independent variable. a cohort of south african female youth (n = 100), aged 9–17 years, voluntarily partook in the study. the participants were randomly distributed into an experimental (n = 50) and a control (n = 50) group. the experimental group stood in a head-loaded state with their respective habitual head-load mass. their proprioception measurements were compared during their unloaded versus loaded states, with the proprioceptive measurements including the total proprioception index, the anterior–posterior (front–back) index and the medial–lateral (side-to-side) index. participants furthermore completed a head-loading health-related questionnaire. results: participants had a mean age of 12.3 ± 2.5 years, body mass of 44.4 ± 13.7 kg, stature of 145 ± 10 cm and a head-load mass of 8.0 ± 2.5 kg. participants had poorer medial–lateral proprioception during head-loading as compared to their unloaded state (1.4 ± 0.8 as compared to 1.6 ± 0.9) (p < 0.05). most youth (96%) experienced neuromusculoskeletal pain in their cervical vertebrae (40.9%), shoulders (27.3%), lumbar vertebrae (10.7%), arms (8.3%), legs (8.3%), knees (1.9%), fingers (1.5%), toes (0.5%) and thoracic vertebrae (0.5%) (χ2: p < 0.05). conclusion: head-loading adversely affects the medial–lateral proprioception and neuromusculoskeletal health of participants. contribution: the findings of this study confirms that head-loading produces musculoskeletal pain. keywords: head-loading; proprioception; neuromusculoskeletal health; youth; biokinetics; pain. introduction head-loading is a longstanding traditional mode of transporting food, water and firewood which is practised in many rural south african communities (kurten et al. 2020; porter et al. 2013). this important domestic occupational responsibility is allocated to female pubescents and adolescents and is associated with long-term neuromusculoskeletal injury and disability (echarri & forriol 2005; porter et al. 2013). young girls and women carry head-load masses ranging from 2 kg to 35 kg, transporting them over distances varying from 2 km to 10 km (kurten et al. 2021b; porter et al. 2013); the consequences of habitual head-loading are both positive and negative (kurten, ellapen & paul 2021a). porter et al. (2013) reported that female youth who habitually carry head-loads and assist with routine domestic chores are considered to be contributing members of the family; consequently, this causes an exponential increase in their wedding dowry (kurten et al. 2020). the negative health impact of habitual head-loading includes both acute and chronic neuromusculoskeletal pain, intervertebral disc prolapse and spondylolisthesis (echarri & forriol 2002, 2005; ellapen et al. 2009; porter et al. 2013). habitual head-loading can be viewed as an occupational task that many rural female youth perform (kurten et al. 2020; porter et al. 2013). furthermore, while many africans and asians work as porters, carrying external loads on their heads (porter et al. 2013), asian porters employ unique equipment for head-loading that includes a namlo [tumpline] connecting the forehead to a doko [basket], which rests against the porter’s back and may occasionally be rested on a tokma [t-shaped stick], which is also used as an alpenstock (bastien et al. 2016; minetti, formenti & ardigo 2006). porter et al. (2013) reported that the most popular method of external load carriage in africa is a derivative of the asian head-loading technique. african porters place a soft piece of cloth upon their heads which is twisted tightly and then manipulated to form a circle in order to both stabilise and provide cushioning for the load (lloyd et al. 2010). while habitual head-loading porterage among rural south africans is primarily considered a domestic occupational task (kurten et al. 2021a), many african and asian individuals carry external loads in cities and rural areas as professional porters (minetti et al. 2006; porter et al. 2013). epidemiological investigations among african head-loading porters have reported an incidence of spondylolisthesis and intervertebral disc compression as well as symptoms of neuromusculoskeletal pain and persistent fatigue (echarri & forriol 2002, 2005; ellapen et al. 2009). echarri and forriol (2002) reported a 20% incidence of spondylolisthesis, a 25.8% incidence of intervertebral disc prolapse, a 35.3% incidence of anterior osteophyte development and a 9.4% incidence of posterior osteophyte development among congolese female porters. ellapen et al. (2009) reported that south african adolescent female porters commonly experience musculoskeletal pain in their vertebrae (73.6%), shoulders (21%) and arms (5.2%). geere, hunter and jagals (2010) further reported that south african adolescents who habitually head-load external masses experience a high incidence of cervical vertebral (69%) and lumbar vertebral (38%) neuromusculoskeletal pain. while the impact of head-loading on the proprioception capabilities of south african female youth porters has not yet been the subject of investigation, the proprioception capabilities of asian head-loaders have been investigated (hoque, grangeon & reed 1999; hoque et al. 2012). hoque et al. (1999, 2012) reported an association between head-loading and poor proprioception, incurring a high incidence of falls and injuries. it is important to note that the asian method of head-loading employed by the porters in these studies differs from the african method. nevertheless, a parallel health-related investigation should be conducted so as to validate these findings among an indigenous south african cohort. insofar as proprioception enables an individual to be better orientated within their environment, increasing their stability (prentice 2015), poor proprioception has been related to an increased risk and incidence of injuries (han et al. 2015; prentice 2015). the practise of head-loading is a rich part of the african culture and social infrastructure, which will be extremely difficult to terminate (echarri & forriol 2002, 2005; ellapen et al. 2009; geere et al. 2010), and kurten et al. (2020) furthermore reported that community elders in rural south african villages are reluctant to allow female pubescents and adolescents to change their method of transporting external loads. many rural community elders feel that only men should be allowed to use animals, animal-drawn vehicles and motorised vehicles to transport external loads. the transporting of water, firewood and food is considered to be the responsibility of pubescent and adolescent girls (9–17 years), who must use the head-loading method (kurten et al. 2020; potgieter, pillay & rama 2018). more research confirming the adverse health effects of head-loading can be used to persuade rural community elders to rethink their mindset and allow pubescent and adolescent girls to change their method of transporting food, firewood and water. from a scientific perspective, the evidence documented by ellapen et al. (2009) and geere et al. (2010) that daily head-loading produces cervical, thoracic and lumbar vertebral pain among pubescent and adolescent south africans needs to be validated. to this end, thomas, nelson and silverman (2015) recommended the validation of previous novel research in order to create interest in a given field of study. that said, the effect of head-loading on the proprioception of south african pubescents and adolescents has not yet been investigated. thus, this study represents original research, which strengthens the rationale for the study. the findings of this study will increase public awareness and significantly augment the currently limited body of evidence, which in turn can help medical doctors, physiotherapists and biokineticists to develop strategies to rehabilitate – and/or prevent – neuromusculoskeletal pain and injuries among pubescents and adolescents who carry head-loads. this study determined the impact of head-loading on the neuromusculoskeletal health and proprioception of female south african youth. methods research design in this study, a counterbalanced within-subject single-factor experimental design was used to compare the changes that occurred when the same independent variable (head-loading), within two homogenous groups, was measured against the dependent variables (outcomes: neuromusculoskeletal pain and proprioception) at two time periods, before and after the introduction of the independent variable (the experimental manipulation) (passer 2017; price, jhangiani & i-chant 2015; thomas et al. 2015). the researcher used a homogenous group of participants who could head-load external masses. the intention of the study was to determine the impact of head-loading on a group of homogenous participants who regularly carry head-loads. this study also sought to validate the earlier findings of the study by ellapen et al. (2009) and geere et al. (2010) conducted in south africa, insofar as these were novel papers in the field of rehabilitation. the unloaded group served as a control group, given that head-loading was the intervention (passer 2017; price et al. 2015), with the experimental group experiencing the head-loading (intervention). furthermore, the implementation of a counterbalanced within-subject single-factor experimental design allowed for randomisation of participants, which resulted in a pretest–post-test experimental research design. randomisation into the head-loaded (experimental) group or the unloaded (control) group during the pretest stage was made by the participants’ selection of a ball from a hat: unknown to the participants, the selection of an orange ball placed the participant in the head-loading (experimental) group during the pre-test stage of the study, whereas the selection of a white ball placed the participant in the unloaded (control) group in the pretest phase (figure 1). figure 1: a counterbalanced within-subject single-factor experimental design. the inclusion criteria of the study were that participants had to head-load daily, that they were between the ages of 9 and 17 years and of female gender and that their participation was voluntary. the reason for the delimitation of the cohort’s age to 9–17 years was based on literature reporting that the transportation of water, firewood and foods is considered to be the responsibility of pubescent and adolescent girls (9–17 years), who are required to use the head-loading method of transportation (geere et al. 2010; kurten et al. 2021b; potgieter et al. 2018). the mass of participants’ habitual head-loads and their body mass were measured on an electronic scale. demographic characteristics including age, body mass and stature were recorded. sample size the sample size was calculated using cochran’s formula to ensure power of significance of the study findings, which was calculated to be 95.45 and can be approximated to 100 for ease of experimental design. the experimental (n = 50) and control (n = 50) groups were established through participants’ personal selection of a white (control) or orange ball (experimental) from a hat. data collection from a single participant took approximately 15 min. once the participant’s loaded data in the experimental group were collected, the participant then crossed over into the unloaded state (control group) and vice versa. there was a 30-min delay between data collection in the loaded and data collection in the unloaded state and vice versa, which allowed the participant to rest. the acute intervention that distinguished experimental and control groups was that the experimental group carried their habitual head-loads. the study measured the participant’s habitual head-load and not their maximal heal-load. the control group, during the unloaded phase, stood without a head-load, while the experimental group carried their habitual head-load. cranial loading musculoskeletal pain-related questionnaire this study measured the incidence of head-loading-related neuromusculoskeletal pain experienced by the participants using the ellapen et al. (2009) cranial loading questionnaire, measuring the incidence of head-loading-related musculoskeletal pain among a cohort of female south african youth who carried head-loads on a daily basis. while this questionnaire measured the incidence of musculoskeletal pain incurred from head-loading, the validity and reliability of the questionnaire was not cited in the literature (ellapen et al. 2009). this study’s proposal, which contained the questionnaire, was presented to a panel of experts in the field of biokinetics and occupational health, who approved the use of the questionnaire (content validity) (reference number rec2020-11-013). the authors furthermore conducted a pilot study (test–retest) to ascertain the trustworthiness of the data collection protocols (intraclass correlation [icc] r = 1.00 reliability). the questionnaire was isizulu language-edited. participants were presented with both the english and the isizulu questionnaire. the participants completed the questionnaire after carrying the cranial load. furthermore, the participants carried these cranial loads on a daily basis and were able to remember whether their cranial loads caused pain. the mining of data gathered from the cranial or head-loading questionnaire was conducted by an individual proficient in both english and isizulu. the head-loading questionnaire recorded the mass of the habitual head-load carried, the duration and distance the head-load was transported, as well as the topographical terrain over which the external head-load was transported. the fundamental health-related pain questions were whether the participants experienced pain and discomfort during the transportation of the head-load, as well as the post-health effects of head-loading, the type of pain and the anatomical sites that sustained pain due to head-loading. the questionnaire contained both closed-ended and open-ended questions (ellapen et al. 2009). a graduate research assistant fluent in isizulu assisted parents and youth with the questionnaires if queries of uncertainty arose. proprioception measures proprioception is the body’s ability to sense movement and its position. poor proprioception leads to neuromusculoskeletal injury (prentice 2015). participants’ proprioception was measured using the portable biodex stability system (bss) sd (biodex system 2) (biodex medical systems, inc.). all participants started the proprioception test on a stable surface of 10 pins, which was gradually reduced to one pin over a 60-s period, where one pin is the least stable platform. participants were requested to maintain their optimal balance on the progressively unstable surface for the 60-s duration of the test. the ‘limits of stability’ (los) test was employed. the los test measures the points at which the person’s centre of gravity approaches the limits of their base of support and then executes a correction strategy in order to return their centre of gravity to within the base of support. the test provides three measures: overall stability index, anterior–posterior (front–back) stability index and medial–lateral (side-to-side) stability index. the overall stability index measures the variance of foot platform displacement in degrees, from level and stable, in all motions during a test as the platform becomes less stable. a high number is indicative of poor overall stability. the anterior–posterior stability index measures the variance of foot platform displacement from a stable level of 10 pins to an unstable level of one pin, where movement occurs in the sagittal plane. a high index reflects poor anterior–posterior stability. the medial–lateral stability index is the measure of the variance of foot platform displacement from a stable level of 10 pins to an unstable level of one pin, where movement occurs in the frontal plane. participants could hold onto the guard rails if they felt they were going to fall. furthermore, a graduate research assistant stood behind the participants to catch them if they fell, thereby reducing the risk of injury. no incidents of falls occurred during data collection. the proprioception of participants was measured during the unloaded (control) and head-loaded phases (experimental). statistical analyses the statistical analyses involved descriptive and inferential analyses. the descriptive analyses included mean, standard deviations and percentage differences. the inferential statistical analyses involved parametric data analyses and nonparametric data analyses. the parametric data analyses involved paired t-test and effect size analyses of participants’ head-loaded versus non-head-loading proprioception scores, while the nonparametric data analyses involved chi-square (x2) analyses of the head-loading neuromusculoskeletal pain questionnaire. the proprioception data fall under the categorisation of continuous data, and scores can range from 0.00 to infinite. the greater the score, the poorer the proprioception of the participant. the t-test is commonly used in statistical analysis of continuous data which are normally distributed. the probability level was set at p ≤ 0.05. ethical considerations ethical approval was obtained from the tshwane university of technology (rec2020-11-013). the following ethical approval procedures were adhered to: ethical approval was obtained: (1) from the department of sport, rehabilitation and dental sciences internal research ethics committee; (2) from the faculty of science committee for research ethics; and (3) from the tshwane university of technology research ethics committee. the study received the ethical approval number rec2020-11-013. the researchers followed the subsequent steps in order to receive gatekeeper approval: a briefing with the royal court of ilembe district was held, explaining the nature of the study and answering all their questions. upon the approval of the royal court of ilembe district (zondi 2020), the researchers held a briefing session with community leaders (residence chiefs) and the community (parents, guardians and children). information letters describing the purpose of the study were given to the participants, and the study was furthermore explained to the community (leaders, parents, guardians and children). at the briefing meeting with the community, informed parental consent and child assent documents were handed out to the community. all questions posed by the community were answered. following this, an intermediator was identified who was present at the time of data gathering so as to ensure that participants were not coerced. the intermediator was a local community leader who was not involved in the study. prior to data collection, the intermediator collected all parental informed consent and child assent documents. the study followed the south african coronavirus disease 2019 (covid-19) precautionary guidelines (greef 2020), as well as the helsinki declaration. results the results of the study will be presented in the following sequence: demographic characteristics (table 1), musculoskeletal health (figure 2) and proprioception indices (table 2) (n = 100). figure 2: graphic display of the anatomical sites most vulnerable to cranial loading–induced musculoskeletal pain. table 1: demographic details of participants (n = 100). table 2: comparative review of participants’ proprioception when unloaded and head-loaded (n = 100). the participants’ average body mass index (bmi) was 20.5 kg/m2 ± 4.5 kg/m2. the ranges of the demographic characteristics were age: 9–17 years, body mass: 23.6 kg – 82.4 kg and stature: 120.0 cm – 168.8 cm. the percentage of external head-load in relation to participants’ body mass was 17.9. this was calculated in equation 1, as follows: musculoskeletal pain questionnaire analysis all the participants carried an average head-load of 8.0 kg ± 2.5 kg daily. participants carried an average external head-load of 2.47 km ± 4.09 km. the path they walked on varied from a flat surface (8.3%) to an uneven surface (31.1%), to hilly terrain (15.4%), to grassy terrain (13.6%), to muddy terrain (3.0%) and to rocky terrain (28.5%) (p < 0.0001). the participants began carrying head-loads from the mean age of 8.8 ± 2.01 years. almost all the participants (96%, n = 96) experienced pain when carrying head-loads (p < 0.0001). the anatomical sites most susceptible to pain included the cervical vertebrae (40.9%), shoulders (27.3%), lumbar vertebrae (10.7%), legs (8.3%), arms (8.3%), knees (1.9%), fingers (1.5%), thoracic vertebrae (0.5%) and toes (0.5%) (p < 0.001) (figure 1). the reported types of pain experienced when carrying head-loads were dull aching (37.6%), sharp (29.1%), radiating (17.6%), pins and needles (12.1%) and other (3.6%) (p < 0.0001). of the 96 participants who experienced pain when carrying cranial loads, only 66 (68.75%) sought treatment (p < 0.0001). participants used the following three treatments: rest (83.0%), medication (14.2%) and other (2.8%) (p < 0.0001). the overall proprioception index of participants differed negligibly between unloaded and head-loaded states, as indicated by the effect size (d = 0.03) (p > 0.05). while there was a nonsignificant difference in the anterior–posterior index between the unloaded and head-loaded states (d = −0.08) (p > 0.05), a significant difference in the medial–lateral index (% difference = −19.28%, d = −0.21) (p < 0.05) between unloaded as compared to head-loaded states was nevertheless found (table 2). skewness of the unloaded versus the loaded proprioception scores in the medial–lateral index is −0.1, suggesting the distribution is approximately symmetric. discussion the discussion of the results will first consider the impact of head-loading on the participants’ neuromusculoskeletal health and then on their proprioception. musculoskeletal injury profile most of the participants who carried head-loads experienced pain, which corroborates previous findings (echarri & forriol 2002, 2005; ellapen et al. 2009; kurten et al. 2021a, 2021b; porter et al. 2013). the anatomical sites most vulnerable to pain were the cervical vertebrae, shoulders, lumbar vertebrae and arms, which concurs with the studies of echarri and forriol (2002, 2005) as well as with ellapen et al. (2009) and geere et al. (2010). echarri and forriol (2005), ellapen et al. (2009) and geere et al. (2010) reported that most pain was experienced along the porters’ vertebral column, a finding which supports those of this study. the following biomechanical postulations are associated with head-loading vertebral pain: kurten et al. (2021) reported that head-loading produced a deviated posture manifested in diminished vertex height, which concurred with both the studies by echarri and forriol (2002, 2005) and ellapen et al. (2009). head-loading compressed intervertebral discs, which subsequently accounted for the diminished vertex height (echarri & forriol 2002, 2005; ellapen et al. 2009; kurten et al. 2021a), with intervertebral disc compression also being known as intervertebral disc prolapse or herniated nucleus pulpous (mansfield & neumann 2014; prentice 2015). echarri and forriol (2005) confirmed that intervertebral disc prolapse caused by head-loading produced severe radiating neuromusculoskeletal pain from the cervical vertebrae to the shoulders and arms. ellapen et al. (2009) reported that head-loading also produced a change in the craniovertebral angle, which resulted in the anterior translation of the superior cervical vertebrae onto the inferior vertebrae also causing intervertebral disc impingement or compression. this intervertebral disc impingement or compression manifests along the cervical vertebrae, shoulders and arms as paraesthesia (nerve pain) (mansfield & neumann 2014). the authors postulated that the aforementioned biomechanical cascade of events does explain the association between intervertebral disc compression precipitated by head-loading and symptoms of paraesthesia from cervical vertebrae to shoulders and arms. ellapen et al. (2009) reported that head-loading further produced lumbar intervertebral disc compression, resulting in radiating paraesthesia in the lumbar and sacral vertebrae and legs. kurten et al. (2021a) reported that head-loading produces anterior pelvic tilt, which hyperextends the lumbar vertebrae producing excessive lumbar lordosis; the head-load causes the lumbar vertebrae to hyperextend, which compresses the lumbar intervertebral discs, producing paraesthesia. excessive lumbar lordosis is synonymous with paraesthesia of lumbar and sacral vertebrae and of the lower limbs (mansfield & neumann 2014; prentice 2015). the authors of the present study postulate that head-loading produces a cervico-kypholordotic deviated posture. a cervico-kypholordotic posture is a combination of excessive cervical lordosis, thoracic vertebrae kyphosis and lumbar vertebral lordosis. this postulation is supported by the theory of serial distortions of the human vertebral closed kinetic chain, which suggests that, when one vertebral segment is displaced from its anatomical position, it causes subsequent vertebrae to follow suit, resulting in an amplification of the normal cervical–thoracic–lumbar vertebral anterior posterior anatomical support curving of the human vertebral column (prentice 2015). cervico-kypholordotic posture has being recorded among pubescents and adolescents who carried heavy school backpacks (hundekari et al. 2013), which is also a method of carrying external loads. the subsequent series of pathomechanical events that participate in a cervico-kypholordotic posture is hypothesised as follows: the external head-load anteriorly rotates the pelvis and hyperextends the lumbar vertebrae, which causes serial distortion up the closed kinetic chain of the vertebral column, resulting in an attenuated posterior thoracic curvature (excessive kyphosis), subsequently leading to an altered craniovertebral angle. the reciprocal relationship between the increased anterior pelvic angle and the altered craniovertebral angle relates to the human body’s natural anterior–posterior weight-bearing engineering curvature (mansfield & neumann 2014). when the pelvis is anteriorly tilted, the pubescent could fall forward; thus, in order to prevent a forward fall, the thoracic vertebrae hyper-flex and the cervical vertebrae are drawn either anteriorly or posteriorly, thereby altering the craniovertebral angle. this postulation requires empirical validation by further research. future research should measure the effect of head-loading on the closed kinetic chain system reviewing cervical, thoracic and lumbar vertebral alignment, standing pelvic rotation, sagittal plane knee alignment (such as genu recurvatum), frontal plane knee alignment (such as genu valgum or varum) and navicular height and drop, in both the sagittal and frontal planes among females who carry head-loads daily in rural regions of africa. this study reported that participants simultaneously complained of sharp, radiating pain, pins and needles and dull aching pain, which are suggestive of neural and muscle pathology (brukner & khan 2006). the finding of neuromuscular pathology does corroborate the claim that head-loading produces neuromusculoskeletal pain, supporting the previous findings (echarri & forriol 2002, 2005; ellapen et al. 2009). the most widely used treatment method is rest, which corresponds to the findings of porter et al. (2013). the authors suggest that participants were residents of impoverished rural communities who cannot afford medical treatment and rely on medical staff who operate at rural outreach medical centres. these outreach medical centres do not have sufficient resources to assist patients and are situated a long distance away from residents’ homes. it is postulated that many participants opted to rest their aching bodies given the limited medical assistance they anticipated that they would receive in the rural medical centres. however, it is recommended that deeper investigations be undertaken in order to confirm the aforementioned postulation. comparative proprioception measures between unloaded and head-loaded states participants in this study had poor proprioception in the medial–lateral index along the frontal plane, which concurs with the findings of hoque et al. (1999, 2012), who reported an association between head-loading carriage and poor proprioception, incurring a high incidence of falls and injuries. proprioception, together with kinaesthetic awareness, helps a person to optimally orientate themselves within their environment, preventing loss of balance (prentice 2015). the person’s visual, auditory and somatosensation help to maintain optimal positioning within their environment, thereby preventing injury (prentice 2015). poor medial–lateral proprioception has been associated with an increased risk of ankle injuries (han et al. 2015). the most common proprioceptive injury is lateral ankle inversion sprains, where the person’s body mass and/or the external load rapidly moves over the lateral aspect of the weight-bearing ankle in the medial–lateral axis of the frontal plane (dreyer 2021; han et al. 2015; prentice 2015). this pathomechanical event occurs when the ankle rolls laterally (outwards) while simultaneously inverting the foot, tearing the lateral talocrural ligaments (anterior talofibular, posterior talofibular and calcaneofibular) (gibboney & dreyer 2021). when one considers the scenario where head-loads are carried while walking through rugged mountain terrain, the possibility of poor medial–lateral proprioception could be responsible for lateral ankle sprains and falls (in the frontal plane), which does adversely affect the quality of life of the rural community dwellers. krolikowski et al. (2018) and sanchez-garcia et al. (2022) reported that mountain hikers sustain a high incidence of ankle and knee sprains (in medial–lateral axis within the frontal plane), which were advocated as being the mechanism of falls. insofar as the geographic location of ilembe district is in the mountainous region of kwazulu-natal, the aforementioned literature does support the premise that poor medial–lateral proprioception stability in the frontal plane could produce ankle pain and falls, causing injury to the lower limbs. conclusion this study’s findings showed that head-loading adversely affects the neuromusculoskeletal health and proprioception of porters. the anatomical sites most susceptible to neuromusculoskeletal pain were the cervical vertebrae, shoulders and lumbar vertebrae. acknowledgements mrs bernlee doherty, marijke kurten, nolo moraba. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.g.m. contributed to conceptualisation, data collection, statistical analyses and writing of the manuscript. t.j.e. contributed to conceptualisation, data collection, statistical analyses and editing and writing (supervisor) of the manuscript. y.p. contributed to conceptualisation and editing and writing (co-supervisor) of the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not for profit sectors. data availability data on accession codes, unique identifiers and list of figures that have been associated with raw data would be available on request from the corresponding author, t.j.e. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references bastien, g.j., willems, p.a., schepens, b. & heglund, n.c., 2016, ‘the mechanics of head-supported load carriage by 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techniques for sports medicine and athletic training, human kinetics, illinois. price, p.c., jhangiani, r. & i-chant, a., 2015, research methods in psychology, 2nd edn., bc campus, viewed 01 august 2022, from https://open.bccampus.ca/find-open-textbooks/. sanchez-garcia, l.f., penichet-tomas, a., pueo, b. & jimenez-olmedo, j.m., 2022, ‘injury incidence and pattern in elite young male and female trail runners’, applied sciences 12(3), 1155. https://doi.org/10.3390/app12031155 thomas, j., nelson, j. & silverman, s., 2015, research methods in physical activity, human kinetics, champaign, il. zondi, p.m., 2020, approval to conduct research data collection in the qwabe/mthandeni, ilembe district, unpublished communication. abstract introduction literature review types of disabilities and indiscipline problem statement theoretical framework research methods and design results discussion conclusion acknowledgements references about the author(s) mmanako f. mokano department of education management, policy and comparative education, faculty of education, university of free state, qwaqwa, south africa motsekiso c. letuma department of education management, policy and comparative education, faculty of education, university of free state, bloemfontein, south africa citation mokano, m.f. & letuma, m.c., 2025, ‘disciplinary issues in special education: teachers’ experiences and attribution’, african journal of disability 14(0), a1655. https://doi.org/10.4102/ajod.v14i0.1655 original research disciplinary issues in special education: teachers’ experiences and attribution mmanako f. mokano, motsekiso c. letuma received: 26 dec. 2024; accepted: 17 july 2025; published: 19 sept. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: special education facilities are designed to support learners with special needs. these efforts are vital for ensuring inclusive, equitable education and promoting lifelong learning, which aligns with the sustainable development goals. however, a positive learning environment, including addressing disciplinary issues, is necessary for learning. objectives: this study explored the disciplinary issues that teachers experience in special schools and the contributing factors. method: the study adopted an interpretive paradigm and employed a qualitative methodology using a phenomenological design. it was grounded on bronfenbrenner’s ecological systems theory. the data were collected through semi-structured interviews with six special school teachers from two purposely selected secondary special schools and the data were analysed using inductive content analysis. results: teachers in special schools attributed learner indiscipline to disengagement, absenteeism, and bullying. these behaviours were linked to a variety of factors such as curriculum pressure, teacher leniency, family dynamics, communication barriers, social grant support, racial influences, peer influence and disability-related behaviour. conclusion: a holistic approach that includes enhancing teacher training to equip educators with effective classroom management strategies and strengthening home-school partnerships through regular communication and parenting workshops to support family dynamics and address behavioural concerns is recommended. moreover, training for adapting the curriculum to be more inclusive and diverse learning, as well as establishing peer mentoring programmes to encourage positive behaviour and reduce bullying through social support, are recommended. contribution: the study contributes to the knowledge surrounding indiscipline in special schools and opens further options for contribution to measures that could be implemented. keywords: classroom management; disability; indiscipline; special education; secondary schools. introduction children are not born with the same abilities or aptitudes. while every child requires some support, the level of assistance needed can vary significantly because of each child’s unique traits. those who require more support than their peers are often referred to as children with special needs (department of basic education [dbe] 2014). according to krämer, möller and zimmermann (2021), these children require individualised, practical support to foster academic and social development. thus, special education facilities are designed to provide this support (phala & hugo 2022). such efforts are crucial in ensuring inclusive and equitable quality education and promoting lifelong learning opportunities, key components of the sustainable development goals. however, a conducive learning environment must be established for learning to be effective. this means special schools should address indiscipline to create a safe and supportive atmosphere for all learners. while scholars have not explicitly defined the term indiscipline, they have conceptualised it implicitly as the opposite of discipline, a concept widely examined within the school context. drawing from scholars such as potokri and lumadi (2025), ama, moorad and mukhopadyay (2020), wolhuter and van der walt (2020) and segalo and rambuda (2018), discipline is presented as a fundamental principle in schools that underpins the teaching and learning process. the literature highlights discipline as essential for fostering order, fairness, learner protection, regulation of behaviour among both learners and educators, and the promotion of social cohesion and safety. weak discipline is often linked to the absence of shared ethical values and a lack of caring concern, empathy, and moral awareness (ama et al. 2020). within public and private institutions, discipline remains a cornerstone for the effective functioning of classrooms (segalo & rambuda 2018). consequently, indiscipline, although not always directly defined, is inferred through behaviours that contradict these principles. it is widely recognised as a serious concern in schools because of its disruption of effective teaching and learning (letuma 2024). several studies in the south african context, including those by sumbane et al. (2023), mahlaule, mccrindle and napoles (2024), and chirowamhangu (2024), have explored the challenges that stakeholders face in special schools. however, none of these studies specifically explored the issue of indiscipline within these schools. research has highlighted that the unique characteristics of learners in special schools can lead to behavioural challenges, which, in turn, may, directly and indirectly, disrupt the learning environment (cheng & toran 2022; shoko 2024). this suggests that children with special needs often exhibit behavioural issues that affect teachers’ ability to manage the classroom and create a conducive teaching and learning atmosphere, frequently because of their condition. this background forms the basis upon which the study is grounded. in addition, the study was sparked by recognising a biased emphasis in the literature about indiscipline, predominantly centred on mainstream schools, which significantly constrains exploring this issue within special school contexts. the article aims to contribute by enhancing the understanding of indiscipline in special schools. in south africa, learners diagnosed with disabilities such as learning disorders, visual impairments or blindness, hearing impairments or deafness, attention deficit hyperactivity disorder (adhd), autism spectrum disorder (asd), and intellectual disabilities (id) are typically referred to special schools. however, before such referrals are made, a systematic process is followed by the screening, identification, assessment and support (sias) policy (dbe 2014). this policy offers a standardised framework for identifying, assessing, and implementing appropriate support interventions for learners requiring additional assistance to enhance their inclusion and participation in the school environment. it aims to improve access to quality education for vulnerable learners who face a range of barriers to learning, whether in mainstream or special school settings (dbe 2014). these barriers may include family disruptions, language challenges, the effects of poverty, and various cognitive or physical impairments. the sias process is supported by formal documentation and is implemented by educators in collaboration with school-based support teams (sbsts) and district-based support teams (dbsts). learners’ support needs are classified as low, moderate, or high, based on the intensity and frequency of intervention required. this classification informs decisions regarding where the learner will be supported and the responsible personnel. the policy outlines five critical areas of support: the involvement of specialist personnel; access to assistive devices, specialised equipment, and learning support materials; curriculum differentiation to meet individual learner needs; ongoing professional development, including training, orientation, mentoring, and guidance; and improvements in environmental access, which may be provided temporarily rather than continuously (dbe 2014). the nature and extent of the required support to overcome learning barriers are determined by evaluating the current resources available to the learner and the school, the additional support still required, and the resources accessible at the provincial or district level. placement at a special school is only contemplated after all other assistance options at the local school have been thoroughly examined (dbe 2014). this indicates that, depending on the procedures followed, the ultimate choice to enrol learners in special schools in south africa demonstrates that such a child genuinely merits placement in that institution. studies have shown that behavioural difficulties seen in educational settings, particularly in special education, are frequently associated with the intrinsic conditions of the learners (cheng & toran 2022). this suggests that occurrences of indiscipline in special schools may mainly arise from disability-related behaviours, which are closely and directly linked to the learners’ identified problems (grigorenko et al. 2020). a continual concern relates to educators’ lived experiences and their interpretations or attributions of such behaviours. literature review bullying bullying remains a widespread form of indiscipline among children and adolescents and is widely recognised as both a public health concern and a significant risk factor for mental health issues (abregú-crespo et al. 2024). using data from over 90 000 us public schools, gage et al. (2021) found that bullying was reported across all establishments, particularly targeting learners based on disability, race, and gender. the study further found that hispanic learners, black learners, and learners with disabilities faced higher rates of victimisation and disciplinary actions than their peers without disabilities. similarly, robinson et al. (2023) reported that 21.6% of learners with disabilities experienced significant bullying, compared to 14.5% of learners without disability, often resulting in psychological distress and academic struggles. mareš (2018), through a meta-analysis of 121 studies from euro-american contexts, observed that learners with disabilities are frequently ridiculed and bullied in primary and secondary schools. ochi et al. (2020) found that bullying was strongly linked to early school refusal among children with asd, underscoring the need for early identification and intervention. mokoena (2024), through a qualitative study in free state, south africa, found that while bullying is acknowledged in schools, it is often concealed by victims, complicating intervention by school management teams. collectively, these studies, spanning mainstream and special schools across global contexts, highlight bullying as a persistent and global challenge in education. absenteeism absenteeism, broadly defined as a student’s failure to attend school for any reason, remains a pressing educational concern that disrupts the smooth running of school activities, particularly among learners with disabilities (kearney 2016, as cited in sasso & sansour 2024). simerly (2021) highlights that although educational authorities have implemented various strategies to curb absenteeism, learners with disabilities consistently face greater challenges in maintaining regular attendance. through a comprehensive analysis in england, lereya et al. (2023) applied multilevel regression models to examine the interplay between absenteeism, special educational needs (sen), and student characteristics. their findings indicated that learners with disabilities, especially those with emotional, behavioural, or social challenges, were disproportionately affected by high absence rates. similarly, the united states department of education (2016, cited in anderson 2021) reported that learners with disabilities are 1.4 to 1.5 times more likely to experience chronic absenteeism and are subjected to punitive disciplinary measures, such as suspensions and expulsions. collectively, these studies emphasise the systemic nature of absenteeism among learners with disabilities and the urgent need for inclusive and equitable policy responses. disengagement disengagement, which prevents learners from staying focused on academic tasks, is considered a persistent challenge to effective school learning (leepo 2015, cited in ahmed 2025). this issue is particularly pronounced among learners with learning disabilities, who often face difficulties sustaining academic motivation and confidence. kausik and hussain (2023) investigated the impact of inclusive education on the academic motivation, self-efficacy, and well-being of learners with learning disorders by comparing three groups: those enrolled in special schools, inclusive schools, and those not attending school. their findings revealed that learners without learning disabilities consistently demonstrated higher levels of self-efficacy, academic motivation, and overall well-being compared to their peers in inclusive settings. learners with learning disabilities were found to struggle with academic persistence, often because of repeated failures and limited success, which in turn undermines their belief in their academic abilities. ahmed (2025) further explains that diminished self-efficacy and motivation can significantly impair a learner’s capacity to engage meaningfully in classroom activities, frequently resulting in behavioural challenges and underachievement. similarly, oliveira and lathrop (2022) identify related difficulties, such as incomplete schoolwork, reduced classroom participation, and cognitive processing struggles. within the context of special schools, these findings underscore the considerable challenge teachers face in fostering motivation and active participation among learners with learning disabilities. other causes of indiscipline social media, family dynamics, peer influence, and socioeconomic conditions collectively shape learner behaviour and contribute significantly to school indiscipline. potokri and lumadi (2025) contend that learners are conditioned to violence by continual exposure to hostile content on television and social media. they found that many adolescents are raised in contexts where violence is normalised, not only within their communities but also through the media they engage with, resulting in the perception of aggressiveness as a valid and successful method for attaining their objectives. participants attributed media exposure, particularly to violent, sexual, or unethical content, as a significant catalyst for learners’ indiscipline. this viewpoint is corroborated by matimba (2023), who indicates that more than 89% of such activities can be ascribed to media impact. matimba asserts that this style of content undermines respect for authority and frequently romanticises rebellion, which participants believe fosters bad attitudes and behavioural issues among learners. these findings underscore the influence that media may have on student behaviour and indicate that ongoing exposure to detrimental content may exacerbate disciplinary issues in schools. according to wolhuter and van der walt (2020), inconsistent parenting, characterised by inadequate supervision and poor role modelling, often leads to emotional instability and resistance to authority. this view is supported by rachel, roman and donga (2022), who argue that ineffective parental involvement fosters behavioural problems, particularly when parents fail to reinforce expectations at home. furthermore, obadire and sinthumule (2021) contend that children exposed to violence or substance abuse in their household environments often replicate such behaviours at school, as aggression becomes normalised. similarly, posey-maddox and haley-lock (2020) emphasise that a lack of parental engagement in education undermines teachers’ efforts to maintain discipline, as learners receive minimal reinforcement of school values outside the classroom. moving beyond the family unit, lazaratou et al. (2017) report that poverty is associated with increased aggression and emotional distress, while paulson et al. (2022) explain that chronic stress caused by socioeconomic hardship weakens learner–teacher relationships, further increasing the likelihood of indiscipline. moreover, peer pressure serves as a powerful force during adolescence. as laursen and veenstra (2021) explain, learners often conform to group norms to gain acceptance, even when those norms promote misconduct. veenstra, dijkstra and kreager (2018) and adeniyi and jinadu (2021) add that popular peers frequently set behavioural standards, sometimes encouraging defiance or bullying to assert dominance. according to lunga (2020), this tendency to emulate influential group members means that peer dynamics can either promote or undermine discipline, depending on the values held within the group. therefore, school indiscipline is rarely the result of a single factor, but rather the outcome of intersecting familial, economic, and social influences. types of disabilities and indiscipline learning disorder therese et al. (2023) assert that learners with learning disorders often display social and intellectual deficiencies, which increase their vulnerability to academic failure or dropout. these challenges may lead to the perception of such learners as disruptors, which obstructs the recognition of their underlying difficulties. heudes (2022) suggests that children with externalising or internalising disorders are particularly prone to inappropriate peer victimisation because of their behaviour. individuals with these conditions may exhibit aggressive or distressing actions, potentially leading to negative peer interactions. this heightened vulnerability, coupled with disruptive behaviours, further exacerbates the likelihood of these children disturbing the tranquillity of the classroom, contributing to disciplinary issues. such actions undermine their academic progress and disrupt the broader learning environment, as teachers and peers may struggle to manage these behavioural challenges, thereby increasing the risk of disengagement and further adverse outcomes. visually impaired and blind mohamed, abdelrahem and ahmed (2019) describe visual impairment as a condition marked by reduced visual capacity that cannot be corrected through conventional surgery or contact lenses. this condition encompasses a range of impairments, from partial vision loss to complete blindness. learners with visual impairments often exhibit behavioural issues, such as peer rejection, maladjustment, aggressiveness, physical altercations, and antagonism, all of which are indicative of indiscipline in educational settings (fathermeh 2012, cited in mohamed et al. 2019). ghorbaninejad et al. (2020) highlight several factors that contribute to the emergence of aggressive behaviours in individuals with visual impairments. these include negative societal perceptions, heightened dependence on parental figures, and insufficient supervision or support. these challenges, when combined, can undermine the development of these learners, potentially disrupting the classroom environment. as such, the behaviours stemming from their condition may pose a significant threat to creating a conducive learning environment, fostering indiscipline and further hindering their educational experiences and integration. hearing impairment and deaf dash (2000, cited in hameed, irshad and mushtaq (2023) observed that hearing impairment is a form of damage or defect to the auditory process, potentially leading to a range of hearing loss, from mild to profound. shoko (2024) highlights that poor communication skills can contribute to behaviours that may be perceived as misconduct. this suggests that schools accommodating learners with hearing impairments often encounter challenges because of the insufficient communication skills of staff and administrators, which hinder effective interaction with deaf learners. adeniyi, olufemi-adeniyi and raheem (2021) further observe that adolescents with hearing impairments are prone to a range of behavioural issues, including restlessness, distractibility, irritability, hyperactivity, aggression, a lack of persistence, excessive sobbing over minor irritations, and tendencies to be shy or distrustful of others. these difficulties, arising from auditory deprivation, may exacerbate the likelihood of disruptive behaviours. awan et al. (2024) also found that children and adolescents with hearing impairments are more vulnerable to behavioural problems than their typically hearing peers. consequently, these conditions may significantly threaten the establishment of a conducive learning environment. the challenges in communication and behavioural regulation can contribute to increasing indiscipline, as teachers and peers may struggle to effectively address and accommodate these learners’ unique needs. attention deficit hyperactivity disorder attention deficit hyperactivity disorder is a condition defined as difficulties in attention, impulsivity, and hyperactivity (celis et al. 2023). alhwaiti (2022) states that adhd is a mental illness characterised by impaired focus and attention, which may be provoked by causes such as the inability to remain seated, hyperactivity, and forgetfulness. these traits may affect learners’ behaviour in schools. for example, one may participate in unsuitable discussions with peers or express opinions without seeking consent. an excessively active individual may struggle to remain sitting because they often fidget with things, rock their seats, and incessantly tap their feet or hands (dupaul & stoner 2003, cited in bolinger et al. 2020). kusmawati, fahrurrozi and supena (2023) assert that the attention span of learners diagnosed with adhd presents a significant barrier in the teaching and learning process, necessitating specialised instructional strategies. such a short attention span may also contribute to learners opting for other activities that may constitute indiscipline. autism spectrum disorder the american psychological association (2013, cited in pienaar & dreyer 2024) defines asd as a neurodevelopmental disorder impacting children in early childhood. this may arise from deficiencies in social interaction skills, including challenges in recognising people and establishing eye contact. they may also display indications of confined and repetitive activities. erasmus, kritzinger and van der linde (2019) conducted a study investigating the profiles of public and private autism-specific schools in gauteng province. the study found that learners with asd frequently exhibit behavioural difficulties that are significantly worse at school than at home. these issues may include cognitive inflexibility, repetitive play behaviours, and a lack of awareness about the consequences of their activities. these behaviours are some of the incidents of indiscipline impacting the teaching and learning process. intellectual disability the world health organization (2022, cited in mckenzie et al. 2024) defines intellectual disability as a neurodevelopmental disease that impairs people’s cognitive and adaptive functioning. the american association of intellectual and developmental disabilities (2021, cited in westrop et al. 2024) and saini et al. (2024) argue that persons with intellectual impairments generally struggle with adaptive and cognitive capacities throughout developmental stages. nicholls, hastings and grindle (2020) found, in their study on a modified version of the behaviour problems inventory, that children with intellectual impairments are prone to displaying problematic behaviours, including destructive and aggressive actions. the results indicated that these learners are likelier to display traits teachers may perceive as challenging and threatening a conducive learning environment. problem statement instances of indiscipline have been observed in special schools (anderson 2020; idris & badzis 2017; shoko 2024; van der linde 2019), and learners in such schools experience severe prejudice and worse penalties compared to their peers without disabilities (gage et al. 2021). research shows that compared to learners in mainstream schools, these learners are more likely to be suspended temporarily from the schools (anderson 2020). the results led browning (2019) to assert the need to identify strategies and procedures to assist teachers and administrators in special schools in managing disciplinary concerns. van der linde (2019) has advocated for more studies addressing indiscipline in special schools, citing a paucity of studies within the south african setting and other nations (florez 2021). le grange (2021) asserts that teachers in special schools have many problems with learners, which affect their effectiveness in classroom management and maintaining a good attitude. however, as van der linde (2019) noticed, the limited research focusing on discipline in south african special schools required attention. to contribute to the body of knowledge in the field, this study explored the disciplinary issues the teachers experience in special schools and the contributing factors. the following question guided the article: what disciplinary issues do teachers experience in special schools, and what are they attributing those to? theoretical framework bronfenbrenner’s ecological systems theory this study was anchored in bronfenbrenner’s ecological systems theory to facilitate a comprehensive understanding of the indiscipline issues teachers experience in special schools. the theory posits that a child develops within a nested ecosystem of social, institutional, and cultural systems, where interactions across multiple levels collectively shape behaviour and development (maniram 2015). this suggests that learners’ behaviour is influenced not only by immediate environments such as the home and school but also by broader societal and community structures. by applying this framework, the study moved beyond attributing indiscipline to individual learner traits or disabilities. instead, it illuminated the complex interplay of relational, environmental, and systemic factors that contribute to learner behaviour (lansey, burnette & ryndak 2023; maniram 2015). these included family involvement, classroom dynamics, socioeconomic conditions, and prevailing societal attitudes towards disability and discipline. bronfenbrenner’s assertion that disruptions or stressors in one ecological layer can reverberate across the system was instrumental in interpreting teachers’ experiences and understanding the experiences regarding indiscipline within special school contexts. the study utilised three fundamental system levels to examine the dynamics of learner indiscipline: microsystem: classroom interactions and direct relationships at the microsystem level, the theory proved pertinent in enhancing comprehension of how the immediate environment, including classrooms, peer interactions, and familial relationships, influences learner behaviour. mesosystem and exosystemic: familial support and institutional obstacles at the mesosystemic level, bronfenbrenner’s theory offered a valuable framework for analysing the interaction between home and school environments, particularly in understanding how varying degrees of family involvement and caregivers’ competence in addressing disability-specific needs, such as communication support, contribute to learner behaviour. in addition, the theory provided a structured lens for interpreting the indirect influence of institutional constraints on learner conduct by highlighting how these limitations shape the broader teaching and learning conditions within special schools. macrosystem: cultural perspectives, disparities, and societal influences at the macrosystem level, the theory enhances comprehension of cultural norms, socio-political institutions, and social attitudes, and their influence on learner behaviour. grounding this study on bronfenbrenner’s ecological systems theory proved essential in unpacking the multifaceted nature of indiscipline in special schools. it also enabled the study to draw nuanced conclusions, considering the multiple interrelated layers that influence learner behaviour. research methods and design this study employed an interpretive qualitative approach and a multiple case study design in two purposively selected special secondary schools. data were collected through semi-structured interviews with four teachers and two heads of departments. participants for the study were recruited with the approval of the school principal, who authorised the research by signing a request letter. this letter provided key details about the study, and informational leaflets were distributed to all staff members. furthermore, a verbal presentation was conducted to clarify the nature of participation and highlight the study’s importance, nature of involvement and the required number of participants. the principal coordinated the scheduling of this session. participation was open to both teachers and school management team (smt) members, as all roles, as defined by the personnel administrative measures (republic of south africa [rsa] 2022), involve teaching responsibilities. the first three staff members who expressed interest were selected for interviews, which were arranged by the researchers on the designated day. informed consent was obtained from all participants, allowing the researchers to record the interviews. semi-structured interviews were used to generate data. a combination of open-ended and closed-ended questions during interviews allowed teachers to share their in-depth experiences (kallio et al. 2016). an inductive content analysis approach was used to analyse the transcribed data. this method allowed the data to guide the development of themes derived directly from the data rather than predetermined by the researcher (vears & gillam 2022). initially, the researchers reviewed the data to gain a preliminary understanding, followed by open coding to break down the data into smaller, significant segments. these codes were then organised into broader themes or groups based on their similarity and importance without relying on predefined categories. the researchers continuously refined these themes through ongoing comparison with the data to ensure they accurately represented the participants’ experiences. the final stage of the analysis involved presenting the findings, highlighting the main themes and interpreting them concerning ecological theory, supported by direct participant quotes. direct quotations were included to enhance the study’s credibility to provide concrete examples and substantiate the researchers’ interpretations. this ensured that the results were grounded in the participants’ experiences rather than the researchers’ biases or assumptions. table 1 and table 2 represent the demographic details of the research sites and the participants for schools a and b. table 1: details of the sampled secondary schools. table 2: participants’ biographic details. ethical considerations the study received ethical approval from the free state department of education and the university of free state ethics committee. the approval was authorised on 21 august 2024 with the ethical clearance number ufs-hsd2024/1446. results the disciplinary issues the teachers experience in special schools the participants indicated that they experience indiscipline through learners’ disengagement towards schoolwork, bullying, and absenteeism (table 3). table 3: summary of inductive content analysis procedure. disengagement data indicated that learners in special schools often display attitudes characteristic of learners with disabilities, although not being so, by showing reluctance to engage in their academic responsibilities and exhibiting disengagement. a participant from school b had the following to share: ‘the type of indiscipline that i encounter is learners not doing their work. laziness.’ (p4, b, dh, m, 22) a participant from school a added: ‘yeah. it is more with homework and learning. remember, although the kids are in a special school and they do not have physical disadvantages, you can see that the attitude is more of a disadvantage than having a physical disadvantage. they do not want to do their work; they do not want to be here.’ (p1, a, teacher, f, 35) bullying the participants also indicated that they experience indiscipline in the form of bullying. according to the experiences of the participants, bullying manifests in two different forms in these types of schools. it is through physical fights influenced by gossip and other learners’ desire for dominance. in terms of bullying through physical fights, a participant indicated: ‘then, there are also, of course, physical fights that break out from time to time.’ (p3, a, teacher, f, 13) another participant shared: ‘sometimes, gossiping contributes. that is many discipline problems of the girls. they tend to bad mouth each other, which turns into a fight.’ (p1, a, teacher, f, 35) regarding bullying that comes because of the quest for dominance, one participant indicated: ‘i mean, it would not have been normal if there had been no bullying. everybody has a way of exerting himself and a desire to dominate others. i mean it’s a normal thing. that is why there’s got to be educators and parents to discipline and to guide all the time. there is, but it has got to be managed and disciplined.’ (p4, b, dh, m, 22) absenteeism the participants additionally stated that they encounter indiscipline in the form of learners who are briefly absent from school for various reasons and then return to resume their studies. as a result, they indicated that the teaching process becomes disorganised and lacks consistency. one participant stressed: ‘mostly ba absconder (they abscond) because of substance abuse. so, there is absenteeism. some go for a long time, and then they come back again. you must start from scratch in terms of teaching when they come back. we are re-admitting learners throughout the year.’ (p2, a, teacher, f, 31) the quotation suggests that educators in special schools face several forms of indiscipline stemming from diverse social interactions and the societal norms that shape everyone’s development. factors that contribute to indiscipline in special schools the participants attributed indiscipline in special schools to schools, out-of-school, and learner factors (table 3). school contextual factors the data revealed that curriculum pressure and teachers’ leniency are school contextual factors contributing to indiscipline in these types of schools. curriculum pressure: the participants revealed that learners misbehave because of the pressure that they feel because they are doing the mainstream curriculum, which does not allow learners with special needs time to cope or adapt; some of them are misbehaving because of their frustration. a participant highlighted: ‘perhaps a lot of work, homework, and strenuous activities that every learner should do because we do a main curriculum. that may put frustration on the learner given their limitations as well in terms of the disability. so, the school system in itself puts tremendous pressure on learners, especially in higher grades. and that alone can cause an outburst in the learner.’ (p5, b, dh, m, 13) another participant also stated: ‘i think many kids cannot cope. they have a backlog in education, and they cannot cope. because they cannot cope, they try to hide this behaviour by being busy with other things that make them look cool or tough. that is why they misbehave.’ (p3, a, teacher, f, 13) teachers’ leniency: the participants also revealed that the school influences the school contextual factors in various ways, such as being lenient on consequences for learners. they alleged that learners with special needs misbehave knowing that there are no consequences for them because of their disability. one participant elaborated: ‘yeah, like i slightly indicated, it’s so difficult to apply consequences. you know, they can see that we are considerate. we are soft on them because of their background, because they have a disability. therefore, we think more along those lines. we are unable to be very strict. we can’t suspend them; we can’t dismiss them. all those types of things. we suspend at extreme measures level.’ (p4, b, dh, m, 22) out-of-school context according to the data, indiscipline in schools is also caused by various external factors outside of the school setting. these include family, communication barriers, social grant support system, social media and race. family: the participants indicated familial influences learners to be indiscipline as some seek attention and belonging at school when they do not receive it from home. a participant stated: ‘maybe they grow up in a household where the parents are absent. i think that has got a huge influence. i think sometimes kids feel unloved, which causes them to act out and to do things. so, they are looking for love in all the wrong places. they are looking for acceptance. the people who sometimes accept you are in the same situation.’ (p3, a, teacher, f, 13) another participant from school a added: ‘the challenges outside the school are normally family. this broken family absenteeism of fathers. the grandma is raising the kids. they do not have a sense of belonging because they come out of a broken home; they want to belong, and they want attention.’ (p1, a, teacher, f, 35) communication barriers: participants indicated that some parents do not use sign language, hindering their ability to convey appropriate values from birth and complicating teachers’ work regarding behaviour when these learners begin their education. one participant elaborated: ‘when the kids come from their homes, you know, they don’t have good relationships with their parents because of communication problems, which is sign language. so that has got a serious problem because the parents themselves are also lenient to these kids because they are unable to communicate with them, so that on its own, the child would not have had communication or discipline from the time while she was still young. so, when he or she starts school year, we start there. and sometimes to be disciplined by somebody that is not your parent is not easy.’ (p4, b, dh, m, 22) social grant support influence: participants noticed that learners with special needs receive social grants, which is aimed to help them with their basic needs. they alleged that parents no longer take part in their learner’s education and behaviour because these learners take their cards into which the money is deposited to school. they also indicated that the social grant support sometimes is used by other family members for their own benefits instead of intended recipients, leading to the development of unacceptable behaviour. a participant shared: ‘i think the main is the south african social security agency (sassa) grants which directly affects education. because the learners are now independent, they are mothers and fathers of their own. they must take accountability for their school fees. now, even when you call parents for ill-discipline of the learner, the parent will not necessarily come, so it’s quite disturbing in the special schools given how the parents relate with the learners with special needs and social grants in between.’ (p5, b, dh, m, 13) another participant further elaborated: ‘because most of our learners are orphans, so, we find that they are staying with their uncles. and then you know that they are receiving the grants. then, the people staying with the kid will use a grant for themselves. the child will start changing in terms of behaviour. immediately, you do the research, you find the root-cause.’ (p6, b, teacher, f, 19) one participant also added: ‘and parental involvement has been contaminated by sassa grants. because when you speak to the parent about the responsibilities in their learner involvement, they will say the learner have taken their sassa card. so, when they have taken their sassa card, then it suggests that the learner is independent, and has got the money.’ (p5, b, dh, m, 13) racial dominance: the data indicated that special schools accommodate learners from varied racial backgrounds because of their limited numbers. as a result of certain races’ attempts to control others, they alleged that racial abuse between learners leads to disobedience. one participant highlighted that: ‘i think, basically, the girls come from various groups. afrikaans english. sometimes, they form groups in society or in school. so, the sotho girls against the afrikaans girls or against the tswana girls. it is still there; we experience it. yes! that inherited racism is still there. i can say the afrikaans, not the afrikaans coloured girls, but the afrikaans white people get bullied. they get bullied a lot. yeah, because there are only a few in this school.’ (p1, a, teacher, f, 35) indiscipline arises because of different external factors that impact learning environments. it is evident from the findings that learners living in environments that are characterised by high levels of parental influence, socioeconomic status, substance abuse, and a poor home environment tend to exhibit an increased tendency to exhibit indiscipline in special schools. moreover, the data show that special schools are characterised by huge diverse races because of accommodating learners with unique challenges; for that, there is a race diversity that leads to derogating comments, causing indiscipline in schools. learner factor the participants alleged that some of the issues encountered by learners in special schools could be attributed to the influence of peers and their disability, which could include non-compliance with school regulations. peer influence: peer influence at special schools is attributed to access to social grant money, which enables individuals to influence others in many ways to serve them in a desire for belonging or to retain friendships. one participant stated: ‘peer pressure amongst themselves is common because others have got what i mentioned earlier as social grant cards on their own. so, if they have r1000, whatever amount of money to themselves, they can buy clothes, they can buy cell phones. they can do so many things. so, peer pressure is quite rough, and others will end up serving others because of money. so, you find that then others will now lead. others will also buy others for romantic benefits. so, you find those activities happening because of social or peer pressure amongst themselves.’ (p5, b, dh, m, 13) disability-based behaviour: the participants mentioned that learners misbehave because of their disability, such as communication difficulties and a lack of understanding from their teachers and peers, which leads them to start misbehaving because of their frustration. a participant from school b explained: ‘it frustrates when one does not understand the other. communication barriers are one of the factors that cause divorce, even in marriages. that factor leads to learners’ misbehaviour or wrong conception of what they do because of the language barrier. sign language might be the major. it even gets worse if the teacher does not have the skill of sign language and the learners do not understand, or if the learner comes from the mainstream school into the school of the deaf and they cannot speak, cannot even hear the verbal language. so, they are in either of the two worlds: the deaf are not in the hearing world. so that is what causes that outburst. it happens.’ (p5, b, dh, m, 13) another participant elaborated that: ‘yeah, education for deaf learners is not standardised in a way that will be receptive to them. for example, sign language is a new language to them. it has the rules they have to follow. that on its own is new even to educators. when you look at the background of deaf people, their language is not written or spoken. so, it becomes a problem when you ask them to write or read. that on its own is a bearing on them. they would feel like they do not need to do the work. they do not understand what they are reading. they just come to school and go back because. that is what we are doing. we do the work for them. this may contribute to indiscipline because they somehow feel they do not benefit from it.’ (p4, b, dh, m, 22) the excerpt indicates that microsystems, including family and school interactions, impact indiscipline in special schools. the implication is that environment, particularly familial background, type of social system available to learners (mesosystem), teachers’ beliefs towards discipline, which influenced their leniency (macrosystem), significantly impact indiscipline in these schools. discussion this study’s findings underscore a complex interplay of disciplinary challenges encountered by teachers in special schools, illustrating a nuanced array of causes that lead to student indiscipline. disengagement, bullying, and absenteeism are intricately connected to several environmental, family, and societal factors, all of which correlate with bronfenbrenner’s ecological systems theory. this theory highlights the various levels of impact on a child’s development, with elements from the microsystem (individual interactions) to the macrosystem (broader social circumstances) affecting behaviour. as noticed in this study, disengagement is evident in learners’ unwillingness to finish or do assignments, which undermines the educational atmosphere. this issue may be somewhat associated with the learners’ disability, but it is also affected by an absence of adequate structure and participation within the learning environment. the study revealed that teachers at special schools frequently used a lenient approach, perhaps in response to the distinct conditions of the learners. this tolerance, albeit well-intentioned, may unintentionally foster a lack of accountability, permitting complacency to endure. moreover, the curriculum offered, which is similar to that of mainstream schools, may not adequately cater to the specific needs of learners with disabilities, so it may intensify their disengagement and lack of motivation. maphalala and adigun (2024) observed that the adaptation of the curriculum for learners with disabilities is often beyond the teachers suggesting a need for relevant stakeholder intervention in this regard. bullying is a common problem in special schools, arising from a confluence of variables (mareš 2018; robinson et al. 2023). this study found that peer pressure leads learners with impairments to seek control over their peers, frequently instigated by rumours and conflicts. this conduct signifies underlying difficulties of social power and control. the presence or absence of social support networks is crucial in this context. individuals without confidence or abilities may turn to bullying to attain social dominance (laursen & veenstra 2021). the findings of this study revealed that the racial dynamics inside the school exacerbate this issue, as learners from various ethnic origins strive to assert dominance or marginalise their peers. this racial tension signifies more extensive social problems that permeate micro-level interactions among learners, enduring despite the nation’s democratic structure. this is apparent in the historical backdrop and present circumstances, when certain political parties declined to establish a national government of unity owing to racial disparities. societal divisions are reflected in schools, since they frequently mirror the community. franco, durkee and mcelroy-heltzel (2021) emphasised the detrimental effects of racial discrimination on conduct and mental health, observing that victims of racism often endure rage and dissatisfaction. feelings of resentment may exacerbate behavioural problems in special schools, especially among learners who perceive marginalisation by other racial groups. absenteeism disrupts the continuity of the educational process. the study found that learners frequently skip many school days and then face overwhelming assignments, resulting in frustration and disengagement. the teachers are placed in a challenging predicament of accommodating these learners by re-instructing material, further interrupting the educational progression for the remainder of the class. rafa (2017) observed that learners with impairments are 1.4 times more likely to be chronically absent compared to their counterparts without disabilities. this absence can be attributed to external issues, such as inadequate familial support noticed by rachel et al. (2022), which in this study is attributed to certain families’ disregard for their children’s needs, and the misuse of social assistance money for their own benefits rather than those of the child. this neglect might result in the learners feeling disappointed and demotivated, impacting their behaviour both in school and outside of it. wolhuter and van der walt (2020) assert that parents play a significant role in shaping their children’s attitudes towards behaviour in school. this absence reflects broader structural challenges that may be beyond the school’s control. from an ecological systems perspective, these disciplinary issues are not isolated; rather, they are the result of an intricate web of interactions between various environmental layers. at the microsystem level, the teacher–student relationship and classroom dynamics are crucial in shaping student behaviour. the leniency of teachers, because of their empathy towards the unique challenges faced by learners with disabilities, can inadvertently create an environment where indiscipline is tolerated. however, this leniency must be understood within the context of the mesosystem, the broader connections between the school and the family. the study reveals that some families fail to provide the necessary support for their children, resulting in unmet emotional and developmental needs that manifest as behavioural issues in school. the inability of families to impart values to their children, especially in the absence of sign language proficiency, contributes to misunderstandings and, at times, misbehaviour. this lack of clear communication between the school and the family creates an environment where disciplinary problems can thrive. matimba (2023) found that children’s education about morals is being compromised by the failure of parents to teach them proper values. shoko (2024) also found that being unable to communicate effectively may result in issues perceived as misbehaviour. furthermore, the exosystem level, which refers to the indirect influences on a child’s immediate environment, is also a significant factor. social support systems, including financial aid or peer pressure stemming from money, were found to play a role in encouraging misbehaviour. learners who receive social support funds may use this money to influence others, fostering peer pressure that leads to indiscipline. this issue is compounded by racial tensions within the school, which can create an atmosphere of competition among learners, exacerbating bullying and dominance struggles. finally, at the macrosystem level, broader societal influences such as racial inequality and societal views on disability shape how individuals within the school interact with one another. the fact that special schools in the country cater to a mix of different races can lead to power struggles, with some learners trying to assert dominance over others based on racial differences. this social dynamic contributes significantly to the bullying observed in the study. conclusion the disciplinary issues observed in special schools, such as disengagement, bullying, and absenteeism, cannot be fully understood in isolation. they result from a complex interplay of factors within the school environment, the family context, the social support systems, and broader societal influences. by applying bronfenbrenner’s ecological systems theory, we may argue that these issues are not merely individual challenges but are shaped by multiple layers of influence. teachers’ leniency, the curriculum’s lack of adaptation to learners’ needs, family neglect, and social pressures all contribute to the indiscipline observed in these schools. addressing these issues requires a holistic approach that considers all these layers and their interactions, ensuring that learners with disabilities receive the support they need in their educational and personal development. recommendations establish peer mentoring programmes to promote positive behaviour and reduce bullying through social support. the study revealed that bullying, often driven by gossip, dominance, and racial tensions, is a common disciplinary issue. to address this, schools should implement peer-led conflict resolution initiatives and conduct cultural diversity workshops that foster understanding and inclusion. a clear anti-bullying policy must be enforced, while learners should be encouraged to engage in activities that build empathy and social cohesion. additionally, partnering with local ngos and community leaders may support racial reconciliation dialogues and restorative practices within the school community. enhance teacher training to equip educators with effective classroom management strategies and skills to address behaviours such as disengagement, absenteeism, bullying, and challenges related to disabilities. the study revealed that disengagement often stems from frustration with an inflexible curriculum and attitudinal issues. regular training should focus on differentiated instruction, trauma-informed teaching, and motivational techniques. given the communication barriers identified, all educators should receive sign language training. schools should invest in communication aids and recruit or train assistants fluent in sign language. visual aids and alternative communication methods should also be incorporated to support understanding. strengthen home-school partnerships through consistent communication and parenting workshops to address behavioural issues and support family dynamics. the study revealed that many learners come from homes with absent or uninvolved parents, often due to broken families or dependence on social grants. to improve involvement, schools may host workshops on positive parenting and the importance of family support in special needs education. a home-school liaison team can facilitate better communication and conduct home visits where necessary. additionally, schools should collaborate with the department of social development to ensure that grants benefit learners. working with social workers to promote financial responsibility is also vital. finally, economic literacy and peer mentoring programmes may help reduce the impact of monetary peer pressure. adapt the curriculum to be more inclusive by ensuring it meets diverse learning needs and reduces frustration. the study found that curriculum demands often overwhelm learners in special schools, leading to disengagement and disruptive behaviour. the education authorities should revise the curriculum to allow flexible pacing and alternative assessments. schools should also implement and regularly monitor individualised education plans (ieps) tailored to each learner’s needs. limitations and further research the study was limited by scope, as it only investigated one province, one district, and a limited number of special schools. also, because it only gathered a small sample of teachers, future research may investigate how social grants affect learners’ behaviour and their parents’ involvement in educational institutions. other studies may focus on each disability in depth regarding its influence on indiscipline, as this study generalised all the types of disabilities in special schools. in addition, future research may analyse the best practices of professional development programmes to enhance special education teachers’ capacity to deal with disciplinary issues. acknowledgements this article is based on research originally conducted as part of mmanako freda mokano’s master’s thesis titled ‘managing learners’ indiscipline: experiences of teachers in selected special secondary schools, free state’, submitted to the faculty of education, department of management, policy and comparative education, university of the free state in 2024. the thesis was supervised by motsekiso c. letuma. the dissertation remains unpublished and is not publicly accessible, as it has been intentionally embargoed for a period of 12 months. this manuscript has been revised and adapted for journal publication. the author confirms that the content has not been previously published or disseminated and adheres to ethical standards for original publication. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.f.m. was responsible for the conceptualisation, methodology, formal analysis, investigation, project administration, data curation, resources, writing of the original draft and reviewing and editing. m.c.l. supervised the study. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability the data generated during the current study are available from the corresponding author, m.c.l, upon reasonable request. disclaimer the views and opinions expressed in this article are those of the 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adekunle, t.o., mheta, g. & rapeane-mathonsi, m., 2019, ‘even we are important: sexuality and the degenderisation of people with disabilities in the linguistic landscapes of two south african universities in the western cape province’, african journal of disability 8(0), a568. https://doi.org/10.4102/ajod.v8i0.568 original research even we are important: sexuality and the degenderisation of people with disabilities in the linguistic landscapes of two south african universities in the western cape province temitope o. adekunle, gift mheta, maleshoane rapeane-mathonsi received: 30 aug. 2018; accepted: 19 sept. 2019; published: 22 nov. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: this study focuses on the positioning of gender, sexual orientation and people with disabilities in the linguistic landscapes of two selected south african universities, which are located in the western cape province. objectives: this study aims to answer the question: how are power relations depicted through linguistic landscaping in the universities? methods: given that there is minimal empirical data in this field, the researcher approached this question by exploring the way in which sexual orientation and people with disabilities are perceived, via the modal resources used in the categorisation of toilet users at the institutions. specifically, toilet signage was observed as there were only a few other signage or forms of support (such as ramps and lifts – some of which may seem disability-unfriendly in terms of space) and acknowledgement in other places at the institutions for people with disabilities. data (signs, images, texts, billboards and posters) were collected by means of photography. the interpretive paradigm was used to determine the choice of methodology: critical discourse analysis and multimodality. these were also used to thematically analyse the collected data. results: findings revealed that sexuality, as well as subtle inequality, unfortunately remain unravelled areas in south africa’s higher institutions of learning. in addition, the degenderisation of people with disabilities appears to be prevalent at the institutions, although this may not necessarily be reflective of practices at all higher education institutions in south africa. conclusion: nonetheless, the examined results are stimulating indicators of hegemonic and preferred practices in public places. they also depict the obtainable dissimilar scales and imbalances in society, which are not addressed may impede other authentic and ongoing measures of social integration and advancement. keywords: linguistic landscaping; critical discourse analysis; multimodality; sexual orientation; south african universities; interpretive paradigm; degenderisation; people with disabilities; signs; images; texts; billboards; posters. introduction linguistic landscape (ll) is a recently researched branch of sociolinguistics. it was termed ‘gestalt’ by ben-rafael (2009:43), which connotes the understanding of different concepts that make a standard or well-controlled phenomenon. it is birthed from the perception that texts are historically, socially and politically significant communication tools (mcgregor 2010). linguistic landscapes are texts that are publicly displayed, and which mostly provide some understanding of advocated and embraced (ben-rafael 2009) beliefs, ideologies and religions, among others. they are thus termed ‘visible languages’ (bourhis & landry 2002) because they enhance an understanding of the communicative values of texts and their contextual influences. dagenais et al. (2009) thus assert that language serves two functions: namely, symbolic and informative; that is, the nature of the conveyed message and the type of language being used in public spaces (kotze 2010). the ‘symbolic’ functions of linguistic landscaping comprise semantic interpretation of cultural relationships, uniqueness, linguistic prestige and power dynamics while the ‘informational’ functions focus on creating awareness and informing the audience about some phenomenon. it also provides adequate knowledge of the functional business of linguistics and discourse in an organisation and society at large and, more importantly, the intended meanings of texts alongside all forms of influence (political, economic and historical, among others) on linguistic landscaping. the prevalence of power dynamics is, therefore, of significance in this study and is explored via the identification of gaps in language use and practice at the selected universities (which are called ‘university a’ and ‘university b’ in this article) in relation to sexuality, gender identity and the inclusion of people with disabilities. most studies on ll focus mainly on discourses of power, space and language. this research also approaches the collected data with due consideration of these factors, as well as in terms of understanding the utilisation of modal resources in conveying meaning to a target audience. in addition, discussions were based on the discovery of the different weightings of the services provided to the staff and students (as well as other users) of the universities, while also considering the possible impact of inequality on identity. power relations and standards were noted in relation to the accommodation or possible perceptions of people with disabilities, varied gender identities and sexual orientations. this study highlights the important matter of social inclusion or exclusion given the human rights culture in which we are currently immersed. social inclusion manifests in many forms, and people can feel excluded or welcomed in various ways, including through media representation or the lack thereof. mcmullan (2008) claims that about 15% of people in the world have disabilities in various forms. approximately 80% of these are from developing countries, with a higher percentage from the asia-pacific region (mcmullan 2008). regardless, people with disabilities are treated collectively as though they have no gender or sexual orientation (women with disabilities australia n.d.). meanwhile, from the gender perspective, approximately 12% females and 19.2% males have some form of disability (world health organization [who] and the world bank 2011). as a result of the genderless and collective treatments, most people with disabilities are generally ostracised and are not included in society (research brief on disability and equality in south africa 2017:1). therefore, this article focuses on the various ways by which integration and accommodation are enhanced (or not) by the presented modal resources at the selected universities. the focus is, among other things, on the integration and accommodation of sexual differences, gender identities and students with disabilities by the facilities (in this study for instance, observed toilet spaces) accorded to them. additionally, the researcher identified elements of discursive silence in the process of the research, which facilitated a broader analysis of some identified power dynamics, relevance of time and space as well as their impact on the lls of the universities in terms of the indicated phenomena (sexual or gender identities and the degenderisation of people with disabilities) and the constituents of the learning space. these will be explored in detail in the following sections. literature review this section presents reviews on lls in relation to sexual orientation, gender identities and people with disabilities in the selected south african universities. linguistic landscape is also termed ‘semiotic landscape’ as meanings are expectedly tied to signs (jaworski & thurlow 2010) and these meanings are supposed to be understandable to those who occupy that space. space is thus sociolinguistically depicted in that it is easily detected and accepted (lefebvre 1991) and represents policymakers’ and authors’ views and perceptions (trumper-hecht 2009) about social, political, historical and economic issues. lefebvre (2009) explains that social and political spaces are genuine and effective as the maintenance of power and dominance bind them. in other words, languages used in public places are significantly influenced and preserved (or not) by certain levels of power dynamics. blackwood and tufi (2012) for instance examined the influence of ll on french and italian mediterranean coastline cities, where french is the compulsory language used (aimed towards marketing products), accompanied by other languages which the manufacturer of those products chooses. this indicates that authors may have a strong linguistic influence on signs, which may also be controlled by or for economic reasons. an implication of this is the daunting impact of controlled or authorship dependency on produced texts. authors are then likely to be deeply or personally absorbed in their creations or doing it professionally for many reasons, for instance, economic reasons. this indicates that they may either be objective or subjective, depending on the situation. most importantly, authors are significant individuals who influence lls, as well as their placements in public places. in addition, the displayed language code or text is as significant as its placement in public spaces. sign placement is key in an attempt to make a sign visible to the target audience. backhaus (2007) studied the ll of train stations in tokyo, where he distinguished between languages used in public and private places, as well as the placement of those signs. this confirms that any discourse that includes the use of audio, visuals and even humans (shohamy & waksman 2009) and is positioned in a place that is visible (and meaningful) to all, can be referred to as ll. these actions are purposeful and there is an intention to convey a message with any utilised symbol, text or sign within the social and/or cultural space. the intensified interest in linguistic landscaping is based on the premise that besides the use of language, publicly displayed signs or symbols also reflect multicultural and multilingual relationships (backhaus 2007). these texts and symbols are known as modal resources that represent existing, available as well as used and unused linguistic and cultural tenets in society. that is, language, alongside other semiotic resources, can mirror society as well as the applications and occurrences in that given space. symbols also indicate an inner process of awareness that links people to causes and events (langdridge 2007) and they echo circumstances and perceptions (creswell 2007). images disclose certain categories of awareness and signification (prosser & loxley 2008), which help in obtaining in-depth details about both the space and its occupants. linguistic landscapes as being socially and meaningfully shaped is also emphasised by shohamy and waksman (2009) who express that written texts and signs are amendable and can be re-shaped and re-positioned as it suits the authors of the signs and in some instances, the occupiers of those spaces. this reveals the dynamicity of publicly spaced signs in addition to the capability of the spaces to enable all sorts of mediation and competition. nonetheless, it is believed that the modal resources that are used in public spaces may not speak to the linguistic and cultural diversity (moletsane, hemson & muthukrishna 2004:61) of the selected spaces. researching publicly displayed forms of communication in diversely populated academic communities is thus critical because diversity is a controversial issue that may lead to chaos and disunity if not duly considered and managed. linguistic landscapes’ recently observation by researchers stems from the conviction that a community’s language usage reflects in the texts displayed in public places (shohamy & gorter 2009). linguistic landscapes present the prominence and importance of language via their display (as well as how they are displayed) on posters, billboards and street poles. an investigation into linguistic landscaping enables the comprehension of the nature of the existential relationship between language and society (mpendukana 2014), as well as the role one plays in affecting the other. hence, the exploration of lls in multilingual contexts (coulmas 2009). this accentuates the importance of the ll as the society’s lingual mirror, which detects monolingualism, bilingualism and multilingualism. therefore, research in such an area has a significant impact on sociolinguistics. for this research, diversity is a means of engaging with cultural, racial and ethnic differences in order to attain unity (gilligan 2002:9). it is a process of dissimilarity that is dictated by various social dynamics (goduka 1996:68) that have been, according to cross and naidoo (2012), birthed, constructed and supported by humans as well as society. this is the case with many higher institutions. for instance, students who are admitted into universities display the hugely diverse nature of the learning community in terms of race, ethnicity, nationality, culture, sexuality, gender identity, religion, language, physical ability or disability or historical and political affiliations, among others. therefore, the power of publicly displayed texts and information cannot be overemphasised in today’s academic institutions, where posters and symbols are used to inform students and/or staff about products and services. sexuality, sexual orientation and gender while sexuality deals with people’s expressive and experiential knowledge sexually (such as views, feelings and interest in and for other people), sexual orientation is one’s sense of uniqueness about sexuality in a society that has diverse sexual distinctiveness (weisgram & bigler 2007:266). foucault sees sexuality as a crucial aspect of the political tussle, which also extends into the individually motivated struggle for supremacy (sawicki 1986). his popularity among feminist theorists stems from the fact that he disassembles prevailing but concealed forms of hegemony (diamond & quinby 1988). sexuality is a form of passionate or sexual fascination towards someone of the opposite sex or gender (heterosexual), same sex (homosexual), both sexes (bisexual) and not being attracted to anyone (asexual) (reiter 1989:139–150). causative factors of these differences are usually a result of genes, hormones and other forms of societal motivations. nonetheless, as a result of diverse conventional social and cultural orientations and viewpoints, nittle (2012:5) explains that anything other than heterosexuality is not normally considered natural. conventional views on gender usually develop into universally accepted notions that exert influence over the people living in a community (koblitz 2005:110). this encourages stigma and stereotyping (american psychological association 2006:25) in societies. stereotyping is any publicly known or acquired belief about a group of people, which includes a clustered perception of diverse aspects of their lives such as cultures, history, capabilities, gender and occupation and politics, among others (brian 2013:11). hence, there are popular beliefs and expectations about gender, and these are instituted by societal standards. this confirms foucault’s (1976:77–91) assertion that power and societal structures and concepts influence people. foucault (1976:1–14) states that power does not only subdue or inhibit phenomena; it also produces them. to him, sexuality is too essential to be suppressed, because any kind of suppression also impacts related discourses, as they are intentional systems which may be sometimes double-sided. he explains that although sexuality is expelled and denounced, it also gets discussed and remains reachable (foucault 1976:92–102). this article will however not focus on foucault’s stance on sexuality as some of his views on sexuality have been widely criticised as not efficiently deliberating on the influence of human aspirations on sexual standards and ethics. brian (2013:11) defines gender as the informally created roles, behaviours, actions and qualities ascribed as the appropriate norms for men and women. once an action or view about gender identity or classification does not conform to this perception, there is then cause for stereotyping of all sorts. gender stereotyping is a one-dimensional simplification of people’s capabilities, performance and roles according to their gender grouping (yasemin 2008). it is a worldwide phenomenon that has for years been entrenched around the globe. this has also found its way into diverse spheres of life, including higher educational systems whose purpose from inception was the creation of gender equality (bailey 2003:5). a result of action taken by the southern african development community (sadc) in eradicating stereotypes associated with gender was the endorsement of gender equality in education (unicef 2013:30), as well as in the national region. moreover, the south african government has for some time been in a persistent struggle to eradicate gender stereotyping in education, with various policies focusing on addressing this level of stereotype passed soon after 1994 (chisholm & september 2005:24). however, with regard to the lgbtqia (lesbian, gay, bisexual, transsexual, intersexual, asexual – all categorised as queer) community, the situation is more complex for south africa (kings 2014:67). the apartheid government was outrightly unaccepting of lesbian, gay, bisexual, trans and intersex (lgbti) communities. such communities were placed under the sodomy acts and it was a 7-year jailable offence if found guilty (george 2014:34). however, the end of the apartheid government ushered in the end of the common laws act that bound the lgbti communities as the new constitution banned any sexuality-related discrimination (in section 9[3]) (kings 2014:67). this may have been a liberating event for the community as studies, including those of kings (2014:19) and ansary and babaii (2003) reveal the presence of diverse sexuality among south african learners. brian (2013:12) thus states that instead of society influencing people’s gender or sexual status, an individual should be allowed to determine his or her sexuality. tuwor and sassou (2008:365) argue that schools must be gender-sensitive and empowering for gender equality to take place. they explain that there must be a balance of interests and support for each gender identity in an enabling environment where they are well-represented and accommodated. this could be achieved without placing harmful scrutiny on learners’ sexuality (elkins & king 2006:13), with other life-altering issues (such as academic, social success) left unhandled. that is, just as it is crucial that practicality is evident in language planning and policies such that what is advocated (equality) is indeed practised by all and sundry (prinsloo 2011), the policy of social equity should be more pronounced than it currently is (cross 2004:389). therefore, studies that examine language policy and social equity are important, so that detected inequalities are scrutinised, and all social groups and identities gain equal status based on the findings of such studies. gender, sexuality and disability issues gender is one of the most significant classifications of social administration (committee on the elimination of discrimination against women – cedaw 1988), and it is represented in all humans – the physically abled and people with disabilities alike. interestingly, it implies that both males and females with disabilities have similar experiences of disability, thus their classification and perceptions in society (cedaw 1989). this has led to the variously observed forms of disadvantages in terms of how people with disabilities are treated, which is most often reproduced in their experiences, most of which are also inconsiderate of their gender fluidity. different things often perpetuate the sole acceptance of heterosexuality in society, one of which is the concept of hegemonic masculinity which is also linked to manliness, potency and effectiveness (jewkes & morrell 2010). for instance, males are classified as boys or men who should generally be manly or have a macho physique (devor 2009:13) and be assertive, with females classified as girls or women, who should generally be fragile, pretty and gentle (these notions are currently being combatted). this is the reverse and irony of perceived and actual masculinity (cheng 2009; shakespeare 1999) and sexual orientation, as well as the realities of the needs of people with disabilities. there have been various attempts to align sexuality and studies related to disability (garland-thomson 2002). sexual and disability identities and challenges have been argued to possess strikingly similar traits, especially in terms of controversial theories of supremacy (steyn & van zyl 2009) for the former and the theory of able-ism and suppression of people with disabilities (campbell 2013) for the latter. some of campbell’s (2013) gender and disability similarity categorisations are provided in table 1: table 1: similarities between sexuality and disability stances and theories. while available data may be scarce, it provides insight into disability (taylor 2001:15–33) and its stance in south africa. an estimated 5% of south africans were living with disabilities as of 2001 (appunni, blignaut & lougues 2013). this percentage gives a somewhat fair idea of the population of people with disabilities who are residents of south africa. the promotion of equality and prevention of unfair discrimination act 4 of 2000 (pepuda 2000) is listed under section 9(4) in the south african constitution that acknowledges the significance of scrutinising discrimination and the obliteration of social and economic imbalances (national laws on labour, social security and related human rights n.d.: 7). the ninth section of this act proscribes unfair discrimination (research brief on disability and equality in south africa 2017:7) of any sort, namely: denying people with disabilities the relevant facilities and support that could enhance their effectiveness in society breaching the conventions of the south african bureau of standards in terms of environmental convenience failure to remove hurdles that may prevent people with disabilities from having equal rights or failure to ensure that they are sufficiently accommodated in society. therefore, it is important to continuously study the power balances in society so that equal measures are used when dealing with diverse gender or sexual identities and the abilities and functionality of people. linguistic landscaping can then be said to be a powerful display of strength (papen 2012) – linguistically, economically and socially. methodology a qualitative methodology was utilised in this study, underpinned by the interpretive paradigm which focused on an understanding of the observed multimodal resources on the selected campuses of the universities. a case study design was employed as the researcher visited the selected sites and purposively collected data that were based on sight (via the means of photography). the collected data were thereafter analysed using multimodality discourse analysis (mda) and critical discourse analysis (cda) in order to effectively manage diverse kinds of texts, graphics and images. these were also the study’s theoretical frameworks. data units were purposively collected over a 3-day period. of denzin’s (2006) categorisation of four types of triangulation, the investigator (examining and interpretation of data by the researcher and two supervisors) and theoretical triangulation (the use of multiple theories) were applied to enhance the interpretation of findings for this study. multimodality discourse analysis is a communication theory that is absorbed in semiotics (murray 2013:36). it enables an adequate description of the resources that are used to communicate ideas (via writing, visual drawings, cartoons, images, etc.) or other kinds of information. critical discourse analysis, on the other hand, is an interdisciplinary method of studying discourse that perceives language as a shared process (fairclough & holes 1995:47). discourse analysis helps in understanding social relations (fulcher 2010:7) as it is a lucid approach of analysing and interpreting (mcgregor 2010:2) the world via semiotic resources. fairclough (1992:135) explains that cda scientifically researches both the hidden and obvious causes and effects of a text. it helps explore the portrayed power dynamics within texts. its aim is not to provide explicit answers to issues, but rather to enable ontological and epistemological queries (olson 2007:29). critical discourse analysis is thus considered a standardiser of social structures and interactions (wodak & meyer 2008) in a way that is equally beneficial for all who live in the society. critical discourse analysis can also create positive reinforcement if it impacts on society’s use of language and semiotic means of communication (mcgregor 2010:2). the research does not aim to critique theoretical standings, but rather utilise the chosen theories or methods (which were also the methods of data collection and analysis) in data collection and analysis. critical discourse analysis and mda guided the structure of the research, data collection methods, interpretation and analysis of data on both clear and hidden patterns. the selected universities were traditional higher institutions in the western cape province. a campus each for both universities was visited by the researcher once permission was granted. this was deliberate as it was anticipated that, being in the same location, most or all of their policies (especially regarding students) would be similar and be in sync with that of the national government. existing institutional policies (language, disability and sexual orientation), which were all-encompassing and acknowledging of diversity, were also considered in the selection of the institutions. an in-depth qualitative method was utilised in exploring the displayed texts on both selected campuses. the researcher used a digital camera and phone camera to take pictures of intra-campus signage. collected data also included other semiotic resources such as brochures, website information and marketing profiles that were downloaded from the universities’ websites. a total of 400 data units were collected on both campuses (200 on each campus) as they were deemed suitable for the nature and questions of the research. not all the collected data were eventually used as some pictures were blurred and had to be deleted from the lot. hence, 200 data units were interpreted and analysed. a handful of the purposively selected data remarkably pointed towards the issue of hegemony with regard to the degenderisation of people with disabilities and perceptions about sexual orientation (currently with minimal empirical data), which the researcher is of the opinion requires unremitting critical engagement. some of the selection criteria were: language or signage used, displayed ideology and the place(s) of placement. these enhanced an understanding of distinctions and connections between data; the use of space and the intended audience; presentation of ideals as well as the benefits of the utilised signage. examining the textual and contextual interactions of texts gained much consideration during analysis, as rogers et al. (2005) established the importance of the description and interpretation of the establishment and alteration of social practices through data. data were interpreted and analysed thematically. themes were categorised as suggested by mcgregor (2010) and van dijk (2006). occurrence and recurrence of themes were also noted and scrutinised. themes were coded (chamaz 2006) and reviewed to examine signage used and the possibilities of existing power dynamics in texts (lucke 1996). the researcher used these steps as they resonated with gorter’s (2006) profitable coding ideology, which postulates the prioritising of certain steps before, during and after data collection and analysis. ethical considerations this university-specific (durban university of technology’s) ethical consideration was complied with during the course of the research, as there was no risk to humans, environment, a sensitive research area or any need for contact with animals. findings and discussion gender signage amidst diverse modes of communication, advertisements and awareness raising found on the lls of the universities were those on the toilets, which became significant in this study. each sign on the doors connotes the designated toilet spaces for identified genders (male and female – as in figure 1a and 1b). signage is a confined speech act that occurs or is placed at a public or private site (kallen 2009:270). as seen below, two sections of the toilets had commonly used logos for the male and female toilets at both universities. figure 1: (a, b) toilet sections for the able-bodied. however, university a has another toilet space which is labelled ‘gender neutral’ (see figure 2). figure 2: toilet sections for gender-neutral persons. implications of the utilised signage one would think that the placement of such signs at the university is a move in the right direction, considering nittle’s (2012:5) explanation that the generally or conventionally perceived norm is that anything other than heterosexuality is not considered normal. hence, the movement of the university towards embracing students’ choices may be a welcome development. however, acknowledging that not everyone wants to be identified as a male or female may not be enough in the strive for gender equality because there is a level of silence in the conveyance of this message. such labelling may fuel controversies about the classification and identity of ‘gender-neutral’ persons and whether the term should even exist. one also ponders on the safety of such spaces for users if the term is wrongly or inappropriately construed. in addition, having a gender-neutral space could then possibly be a move by the management to encourage space users’ individual preference; in that homosexuals, bisexuals and asexuals, among others, can make an informed decision about what space to use without any form of discrimination or jesting. this raises doubts, however, as to whether this separation could really solve problems relating to sexual differences or add to them, as well as whether the usage of such linguistic code helps to show an acknowledgement and/or appreciation of sexual differences or actually leads to the invasion of people’s privacy (whether or not they want to be seen in that light), thus creating a further divide. the provision of a toilet space for this group also suggests further information: there is no space on the campus and people of this gender identity (regardless of their population and location on campus) should manage with the provided space. there is an acknowledgement of such gender diversities and decisions are in motion to create more spaces to accommodate users, among others. either way, there may be underlying power dynamics that make a group more significant and in a position to be more urgently and fairly treated than another (foucault 1976). discursive silence strikingly, despite the position of south africa on sexuality, collected data indicate that university b appears mum on the issue of sexuality, as there was no sign that signified an awareness of sexual difference or the presence of different sexual groups on campus. this confirms dayan and katz’s (1992) assertion that linguistically, some texts are distinguished with fixed discourses or silence. this may be a way of publicising a pivotal perspective, history or action. it may also be aimed at ensuring that audiences reflect on or absorb situations in order that transformations or alterations occur, bad to good, and vice versa. silence is either an absence of meaning or a marker of the beginning or end of an utterance (saville-troike 1985:3–18). university a, on the other hand, barely showed an awareness of gender identities on one of the toilets by using the term ‘gender-neutral’. as this signage was sighted once on only one of the toilets on the upper campus, it may, however, not be interpreted as an absolute awareness or acceptance of the phenomenon. it affirms pavlenko’s (2009:247) classification of ll as ‘the expression of language conflicts’. silence here is thus implied by the authors’ deliberate (or not) decisions to be more vocal about some issues than others. such lls are likely to influence signage, their usage and placement (location and arrangement), as well as the implied and conveyed message. such silence indicates that these types of issues are either not perceived as problematic or, apparently, people have given up and prefer to be silent because of fear and other reasons, or they are simply indifferent to those issues, hence consenting to the yemeni proverb that ‘if speech is of silver, silence is golden’. this confirms one of the unique characteristics of foucault’s analysis in his conceptualisation of power. foucault claims that power operates more efficiently when it is implemented through dynamic constrictions, which then invoke a limiting reaction from subjects (tremain 2002). more so if the absence of english on signage renders it less modern (lee 2006) or incomplete and the setting less-developed or devoid of globalisation, an unequal representation of space users in a space renders certain un/misrepresented concepts insignificant and less popular. likewise, this finding may be one of the loopholes of studies that focus on gender identity or sexual orientation issues in south africa and around the globe, as research astutely reveals the presence of varied sexualities among south african learners (kings 2014:19). texts are connected and observing what is said or unsaid (given) (fairclough 2003:40) is crucial in the study of texts. textual scrutiny without contextual considerations is however incomplete. signs are not independent of their contexts (martin & rose 2003:1), which in this study would be authors, audiences and the spaces in which they are placed. the symbiotic relationship between sign producers and consumers there is a synergetic relationship between these players that dictates what is seen or read and how it is interpreted. hence, texts should be coherent, written or spoken, interpretable and meaningfully reader-immersed (lou 2009:43) because they deal solely with meaning transmission from authors to readers (malinowski 2009) as they are bound by contexts and reveal language use, while contexts reveal social relations (hasan 1995:186) and issues. one question though is, do these factors take into consideration the effects (if any) of the three landscaping processes (the authorship, readership and connotation of signs) on social identity? figure 3 reveals that each of these contributors is expected to have a mutual understanding of the information (texts and signs) which are specifically publicly placed. there is thus a symbiotic dependence on meaning by all contributors – authors, language controllers and the audience (collins & slembrouck 2007; kallen 2009:274) with regard to the produced text. this consequently has a major impact on the interpretation of texts or signs by the audience as well as their reactions to the texts – reactions as a result of the impact of the text on their identity. therefore, one of these categories of sign influencers cannot exist without the other. the symbiotic relationship of all contributors is thus of importance to this study as they are all intertwined and have a similar goal, which is to deliver meaning-bearing messages via the communicative modes of society. it also enables one to identify the cycle of text production, examination and the stance of the government or language controllers on pertinent issues in society. their synergetic interactions thus present these three categories of sign influencers (authors, audience and language controllers) with different roles in the text and its connotation (adekunle 2018). figure 3: a graphic representation of the symbiotic relationship between sign producers and consumers. people with disabilities another noticeable section was the toilet space for people with disabilities (see figure 4). one may easily assume that the authors of the signage were only being sensitive by allocating a separate and more expansive toilet space for users with disabilities. this is, however, in response to legal requirements (as specified in south african national standard 2011:21–22). the impression is simply inferred by the affixed symbol of the man on a wheelchair and it connotes that only people within this category may use the specified toilet. this again is an example of the interwoven symbiotic relationship of contributors with a specific purpose: conveying meaning-bearing messages to target audiences. figure 4: toilet sections for people with disabilities. this action on the part of the management of the institution indicates an understanding that people with disabilities might need a special and more expansive toilet space. by so doing, students with physical disabilities (or any disability) who might need to use the toilet are not deprived of the required space and facility (mitra 2006). this, according to nussbaum (2006), is justice for people with disabilities, which comprises special provisions that will enable them to have a gracious and convenient life on campus. however, the acknowledgement of students with disabilities should, according to nussbaum (2006), be socially accepted and benefits should be equally and objectively disseminated. this cannot be said of the unavailability of gender specifications on the toilet space that has been provided for users with disabilities. shortcomings of representations this finding confirms hart’s (2011:2) argument that inasmuch as group differences may help to identify forms of unfairness or discrimination, they may also insufficiently detect shortcomings. this highlights some of the shortcomings of the representation of group identities, which are grossly unequal. this finding (as observed on the symbols that were placed on the toilet doors) is a notable instance of the ‘degenderisation of disability’. it was noted in this study that even though the toilets of the able-bodied have gender specifications, those of people with disabilities lack an acknowledgement of gender identity. it is in fact connoted as ‘open for all people with disabilities’, without paying much attention to the gender differences of its users. this may also imply that the university accepts the common perception (as expressed by cedaw 1989) in south african society with respect to prejudicing people with disabilities. this confirms mutanga’s (2017:150) findings related to experiences of students with disabilities in south african higher education institutions which states that students with disabilities encounter diverse challenges in higher education institutions because of a lack of policy. such a statement explains that this issue transcends universities’ stances to policies of both the institutions and government, especially in terms of universal access, spatial planning and existing policies that accommodate all the users of the space. it may also connote existing perceptions around sexual orientation and disability as maintained by women with disabilities australia (n.d.), that people with disabilities are treated collectively as though they have no gender fluidity or sexual orientation. this genderless and collective treatment, according to research brief on disability and equality in south africa (2017:1), may indeed birth or endorse the prevailing repudiation and exemption of people with disabilities and people of different sexual orientations in the affected society. the issue of language dominance is therefore of significance in this study and is explored via the identification of some gaps in language use and practice at the selected universities. a perception exists that discourse reveals ideological and power dynamics by means of studying texts that may reflect language inequality, racial segregation, ethnic differences and gender as well as sexuality issues, which explain people, their actions, reasons for those actions and society (fairclough & wodak 1997:258). there is therefore a conflict (figure 5) between what a sign signifies, represents and connotes as a result of the language displayed, approved and used at both institutions. figure 5: the conflict in communication. these observations, among other things, could be termed as a prejudice: a form of inequality that is silently allowed to prevail, even though it is probably to the detriment (for instance – sexual harassment and undue exposure, among others) of users with disabilities who are all, regardless of gender and sexual differences, expected to share the same private space (students, staff and visitors alike). there are indeed issues relating to how the world is convolutedly expressed and linked by diverse ways of conception and understanding (foucault 1972) and discourses such as these aid in describing the operational levels and semantics of communicative codes, which are also not devoid of hierarchical constructs that often reflect power dynamics. furthermore, the traditional disability symbol is a universal one, but this is also contested as it is not representative of all disabilities. figure 4 may therefore also suggest an acknowledgement of only one of several other disabilities such as the non-visible disabilities (psychosocial, visual, hearing, learning and medical, among others), which form the majority of disabilities. the notion of reasonable accommodation needs to be further explored as a possible solution to the exclusion of certain groups of people, while also considering the provisions of the ninth section of the constitution of the republic of south africa (research brief on disability and equality in south africa 2017:7) as well as section 9 of the disability discrimination act (commonwealth consolidated acts 1992), among other formulated disability acts across the globe. this emphasises the importance of environmental convenience and the removal of hurdles that may prevent an adequate accommodation of people with disabilities in society. findings revealed the position of the universities on the bias of viewing all students with disabilities (or users of the space) as a collective entity that can use the same toilet space, irrespective of their gender or sexual identities, while able-bodied students have the ‘male’ or ‘female’ (and ‘gender-neutral’ – at university a) toilet space classifications. people with disabilities do not have the choice of a toilet based on their gender or sexuality. this could be construed as discriminatory. it contravenes the constitutional rights of that space for users (students, staff and visitors alike) who may have any form of disability. implications of partial representations the provision of one toilet for both men and women with disabilities at the institutions is entrenching deep-seated misconceptions about people with disabilities, which impedes the much-acclaimed inclusivity (strnadova, hájková & květoňová 2015:1080) that south african universities preach. the inconsideration of the gender identities of people with disabilities is thus a subtle way of degenderising people with disabilities at the institutions by acknowledging them as a collective entity. likewise, it is a means of re-conceptualising a misconception about people with disabilities, that is, ‘it is not important if people with disabilities share the same toilet, regardless of their gender identities – men, women, homosexual, transsexual, transgender, among others – at least they all have disabilities’. some themes on discursive silence in terms of some observed social issues such as gender identity, sexuality and the degenderisation of people with disabilities were also realised in the study. notable levels of metaphorical silence with regard to these social phenomena were identified, especially with regard to the provision of services to people with disabilities and the acknowledgement of gender identities at the universities. these findings confirm moletsane et al.’s (2004:61) assertion that the modal resources used in public spaces mostly do not, in practicality, speak to the existing linguistic and cultural diversity in the spaces. while there seems to be no progress in one university, as supported by the lack of posters and signage on the topic under investigation, there is some progress in the other university, although not sufficiently. findings such as these should provoke queries with regard to assessing the impact of the inadequate and unequal reflection of sexual and gender identities of both the able bodied and people with disabilities. this is such that one begins to evaluate the perceptions around sexual orientation and disability and how daily linguistic practices also help to perpetuate subtle acts of divisiveness and labelling. this, among other grave consequences, may lead to feelings of undue exposure and sexual harassment. howell and lazarus (2003) maintain that in order to deal with issues such as these in south africa’s higher education institutions, there must be more focus on student diversity and other challenges (such as degenderisation). fitchett (2015) expresses that work (that focuses on acknowledgement and access for students with disabilities) is currently in place in higher education institutions. the authors thus opine that the re-imagining of spaces and ll, by considering universal access as a way that welcomes and includes gender fluidity and the diverse abilities of all users of environments (be the user a student, staff member or visitor to campus) is not only pivotal to students’ integration in higher education, but is also indicative of continuous development, as well as the awareness and acknowledgement of the existing diversity within spaces. methodologically, cda was effective in the detection of hidden and obvious themes in signage, while mda enhanced the interpretation of the links between texts and images used dependently and independently, as well as the specific linguistic choices such as drawings, graphs and cartoons. although this study advocates a change of scenario, especially with the use of these bi-pronged theoretical frameworks which also doubled as the methods of collection and analysis, one can only hope for change. knowing that cda for instance has been variously described as a form of critiquing that merely attempts to create change, jäger and maier (2009:36) argue that is not an ‘absolute truth’. change creation in one place may be different from that of another; and issues regarding inequality and subordination are usually relative, depending on the society, the language as well as the perceptions and stances of the people living in that community. conclusion it can be concluded that the study of lls is significant in the detection of power-related issues which oftentimes form part of the silent discourses prevalent in texts, their interactions in society and the medium of transmission to the readership. these findings may then be viewed from the perspective of the services (for instance, toilet spaces) rendered, the population in that given space and the supporting policies behind those structures, as opposed to the actual beneficiaries of those services. the degenderisation of disability and the little or no acknowledgement of gender differences, as observed on the toilet doors of the institutions, may unfortunately only be a reflector of other discriminatory and unequal measures with which people or processes are maintained in society. however, this cannot be used to make such generalisations because of limited data and the fact that only 2 out of 26 south african universities were examined. moreover, limited data (as pertaining this subject area) were found and collected during the course of the examination of the existing lls at both universities. it is thus not the researcher’s intention to generalise findings across all universities. this research can, however, serve as a pilot study. on the other hand, this is a considerably complex terrain. it is also expected that there are diverse forms of barriers which may hinder or slow the pace of these developments. some of these barriers may be linked to policy implications (institutional and national), the possibly lengthy processes of approval and the implementation of a more accommodating policy and universal design, as well as controversies that may arise from this sort of inclusion. another prominent factor is the fact that there exist many social groups in society which may inadvertently feel or be excluded while certain others are being included. for instance, in having non-genderised toilet and bathroom areas in a university residence context, one may easily exclude certain religious groups that do not believe in shared ablution areas, just as in the case with toilets and bathrooms that are non-genderised for people with disabilities. the question then may thus be: where do certain religious groups fit in? as valid as the reasoning is, this present study however, only focuses on the accommodation of sexual orientation and disabilities via displayed lls at the universities. the researchers opine that if able-bodied people on campus are allowed the luxury of using an appropriate gender-based toilet (acknowledging their well-deserved privacy and dignity), their counterparts with disabilities should also be accorded an equal right. recommendations an evaluation of this study’s findings provides an understanding that some changes cannot be expected overnight because there are multiple stakeholders engaged in any process of change. this is definitely an ongoing process of transformation in public spaces and perhaps some moves are in progress in ensuring these changes. the researchers will however highlight a few recommendations in this section based on the findings of the study. the recommendations discussed further are proffered towards ensuring an all-embracing and integrating academic space for students, staff and/or visitors at the universities. having noted that people with disabilities, under the south african constitution, have a right to be treated equally, the management of universities should place some focus on the welfare of this group. both able-bodied and students with disabilities are entitled to equal rights in their learning spaces. it is imperative to inquire about the well-being of students with disabilities in higher education institutions, after which a proposal should be put in place for the provision of an inclusive environment. it is thus of immense importance that there are equal and beneficial provisions of services to all students at the universities. public and private organisations need to view this as an issue of identity, as well as societal perceptions about people with disabilities and their rights, which should be on an equal level with their able-bodied counterparts. similarly, universities may need to be more forthright about their positions on sexuality, especially in relation to the law of the land where they are instituted. this is a step towards ensuring the appreciation and/or approval of all students, regardless of their sexual orientation and physical abilities or disabilities. institutions of learning may also curb the widespread practice of degenderising people with disabilities through signage by making provisions for an all-encompassing policy and facility that will consider everyone (able-bodied and people with disabilities) equally. this will hopefully enhance the creation of an inclusive learning space or environment for all students. from this policy perspective, more action must be taken to ensure a synchronisation of policy and the lls, which are mostly the first sets of information that the audience is exposed to. for instance, both explored universities have standardised policies on disability and sexual orientations, which are accommodating and impressive. issues of sensitivity and intentional inclusion without hypocrisy with regard to sexuality should therefore be considered by authors when planning lls. this is because the signs that are expressed by means of the media are essential as they have an impact on the way the audiences of those signs perceive and comprehend them (lacey 1998:35), themselves within the space and society at large. more importantly, the management of institutions should ensure that displayed signage reflects both the mandates of the nation’s policies, as well as the represented groups on campus. this will further assist in facilitating a balanced correlation between the policy of the institution and that of the nation, as well as the institution’s practice, while moving further towards ensuring inclusivity. these issues cannot be ignored as they play a significant role in human and social identities. it is thus vital to ensure that the modal resources (texts, signs, symbols) used on campuses are reflective of the readership that occupy the space. that is, everyone who uses the space must be considered in its spatial and language practices. as findings revealed that, besides the collected data (discussed herein), no other mention was made of these groups in the public or private spaces (billboards or posters) of both universities, it is therefore important that there are avenues that may enable effective and productive interactions and engagements between all students (physically-abled, people with disabilities and gender identities) on campus. the researchers suggest that an attempt be made to involve people with disabilities in appropriate social engagements and interactions in a bid to have an adequate understanding of the challenges they may be encountering and the possible actions to take. this does not only impede exclusion, it also nurtures a warm and productive learning space where students feel welcome, acknowledged and are motivated towards active citizenry. this would not be a privilege; it is in fact their right. possible areas of research focus an examination of the opinions of students with disabilities is imperative in a bid to enhance inclusive practices in south africa’s institutions of higher learning it would be crucial to understand their perspectives on the issues of representation and acceptance, with more emphasis on the modes to which they are exposed in their learning spaces. such research could assist the government and management of the institutions in effecting change where necessary, while also affording authors sufficient knowledge of how displayed information possibly impacts the users of the space. research into the creation of a more inclusive environment for people with disabilities and people of diverse sexual orientations is necessary. an exploration of this via lls and existing resources, among other approaches, may be a push towards the possibility of having universally designed spaces that may not necessarily provide solutions (at least not immediately), but a reasonable accommodation in south africa’s institutions of higher learning and sa as a whole. this is crucial if spaces are to be made available and beneficial to all. acknowledgements this article focuses on one of the key findings from t.o. adekunle’s doctoral dissertation. dr g. mheta and dr m. rapeane-mathonsi supervised the research. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions t.o.a. is the main author and was responsible for the research and key findings. g.m. and m.r-m. were the supervisors for the research. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are 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discourse analysis, university of amsterdam, amsterdam. weisgram, e.s. & bigler, r.s., 2007, ‘effects of learning about gender discrimination on adolescent girls’ attitudes towards, and interest in science’, psychology of women quarterly 31(8), 262–269. https://doi.org/10.1111/j.1471-6402.2007.00369.x who and the world bank, 2011, world report on disability, geneva, viewed 30 may 2018, from http://www.who.int/disabilities/world_report/2011/en/index.html. wodak, r. & meyer, m., 2008, critical discourse analysis: history, agenda, theory, and methodology, pp. 1–33, sage, london. women with disabilities australia, n.d., viewed 28 may 2018, from http://wwda.org.au/issues/. yasemin, e., 2008, sexism in the textbooks, viewed 13 june 2016, from http://www.jceps.com/index.php. article information authors: sianne green1 munyane mophosho1 katijah khoza-shangase1 affiliations: 1department of speech pathology and audiology, university of the witwatersrand, south africa correspondence to: munyane mophosho email: munyane.mophosho @wits.ac.za postal address: private bag 3, wits 2050, south africa dates: received: 04 oct. 2013 accepted: 19 nov. 2014 published: 06 feb. 2015 how to cite this article: green, s., mophosho, m. & khoza-shangase, k., 2015, ‘commuting and communication: an investigation of taxi drivers’ experiences, attitudes and beliefs about passengers with communication disorders’, african journal of disability 4(1), art. #91, 8 pages. http://dx.doi.org/10.4102/ajod.v4i1.91 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. commuting and communication: an investigation of taxi drivers’ experiences, attitudes and beliefs about passengers with communication disorders in this original research... open access • abstract • introduction • the icf and environmental factors    • environmental access and inclusion of persons with communication disability    • disability, access and transport in south africa    • communication disability and transport access • methodology    • research design    • participants • data collection, procedures and analysis    • research instrument    • pilot study    • procedure    • data analysis • results and discussion    • taxi drivers’ awareness and knowledge of speech and language disorders    • taxi drivers’ awareness and knowledge of hearing impairments    • taxi drivers’ attitudes and beliefs    • experiences of passengers with a communication disorder    • techniques used to communicate desired destination • discussion of themes in the data    • feelings of responsibility to passengers with a communication disorder    • the notion that individuals with communication disorders are ‘normal’ people    • level of independence or taxi usage • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: one of the most popular means of public transport within south africa is mini-bus taxis. objectives: as south africa is made up of diverse cultures, religions and beliefs, the aim of this study was to explore johannesburg based taxi drivers’ experiences of beliefs about, and attitudes towards passengers who have a communication disability. method: semi-structured interviews were conducted with 10 mini-bus taxi drivers. results: interviews revealed that almost all the taxi drivers had encountered passengers with a communication disability, and had an awareness of passengers with a hearing disability as opposed to a speech disability. furthermore mini-bus taxi drivers generally held a positive view of their passengers with a communication disability. conclusion: study findings contribute to existing literature within the fields of speech pathology and audiology, advocacy groups and policy makers, particularly research studies on participation experiences of persons with communication disabilities related to transportation access. the results of the study should also provide a foundation for disability policy development initiatives with the aim of increasing levels of public awareness. introduction top ↑ people with communication disabilities face a variety of challenges in accessing everyday services, including the use of mini-bus taxis as a form of transport. the most popular mode of public transportation in south africa is the mini-bus taxi: at least 65% of all public transport users utilise this service (van zyl 2009). these numbers indicate that over 14 million south africans travel on mini-bus taxis daily, spending an average of 65 minutes commuting with an average of 2.3 taxi trips daily (walters 2008). with these significant numbers in mind, one has no choice but to speculate and question how the 0.7% and 0.2% of the south african population with hearing impairments and communication disorders are affected in terms of access to taxi usage (schneider & couper 2007). a study by mashiri et al. (2010) found taxis to be the primary form of public transportation for individuals with sensory impairments in south africa. the american speech-language-hearing association (1993) defines communication disorder as an impairment in an individual's capability to receive, send, process and, or, understand concepts, verbal and non-verbal, as well as visual symbol systems. communication disorders involve hearing, speech and, or, language disorders. an individual with a communication disorder may present with a combination of these signs and symptoms, varying in severity. speech disorders refer to disorders of articulation, fluency and voice whilst language disorders is an umbrella term for disorders of phonology, morphology, syntax, semantics and pragmatics. hearing disorders, both deaf and hard of hearing statuses, are recognised as implicated in communication disorders. the world report on disability (world health organization – [who] 2011) emphasises the significance of access to transport, especially for people with disabilities. transport is the means by which people with disabilities have independent access to employment, necessary health care facilities, education and social and recreational events. without accessible public transportation, people with disabilities will continue to be excluded from various services and social participation. the icf and environmental factors top ↑ the world health organization's international classification of functioning, disability, and health (icf) – 2001 – emphasises the central, influential roles environmental factors play in communication. the course of intervention of speech and language therapy should consider and address the influence these factors have on clients with communication disorders. despite this, many speech-language pathologists and audiologists continue to neglect this aspect of therapy (alant 2005). this scenario continues to change though, with a number of speech-language pathologists now including the impact as well as modifications of the environment to ensure efficacious care of their clients. it is for this reason that the researchers support the assertion that therapy cannot address environmental factors before adequate information is gathered regarding the various environmental factors that either support or impede client participation (howe, worrall & hickson 2008). because of the documented increased reliance on public transportation of people with certain communication disorders (ashton et al. 2008), and the predominant use of mini-bus taxis in south africa (van zyl 2009), this study set out to investigate taxi drivers’ experiences of, attitudes towards, and beliefs about passengers with communication disorders, in order to identify significant environmental factors influencing taxi usage within the south african context. the icf understands disability as a dynamic interaction between the individual's personal and environmental factors (who 2001). in this instance, personal factors refer to intrinsic features not pertaining to the health condition, whereas environmental factors are ‘all aspects of the external or extrinsic world that form the context of an individual's life and, as such, have an impact on that person's functioning’ (who 2001:213). specifically, environmental factors involve the individual's physical surroundings, laws and legislatives, social and communicative encounters and society's attitudes and feelings towards the specific health condition (who 2001). therefore, the environment plays a crucial role in relation to how individuals living with a communication disorder access resources in the community; and in this study, how they access public transportation. environmental access and inclusion of persons with communication disability in the icf model, environmental factors exist in both negative (barriers) and positive (facilitators) forms. howe et al. (2008) argue that there is little published evidence explaining the significant environmental factors that either support or impede the social participation of people with communication impairments. whilst measurement tools that focus on environmental factors have been developed, very few have been developed in the area of communication disorders (rimmer et al. 2004). watermeyer (2006) posits that many opportunities are unreachable because of the lack of safe and accessible transport and not as a result of the characteristics of an individuals’ disability. previous studies have focused on the general population, on the elderly, and on people with visual and physical impairments (jensen, iwarsson & staehl 2002). however, these studies disregard the barriers induced by communication disorders within the accessibility model of the icf (ashton et al. 2008). a study conducted by mashiri et al. (2010) investigated provision of accessible public transportation in south africa. one of the findings revealed that taxi drivers have difficulty communicating with ‘passengers with hearing impairments and those who cannot speak’ (mashiri et al. 2010:7). disability, access and transport in south africa the south african human rights commission (sahrc) provided a national mandate to both protect and secure the rights of all south african citizens, particularly those citizens vulnerable to compromised fundamental rights (nhlapho, watermeyer & schneider 2006). since the advent of democracy, south africa has been active in promoting the rights of disabled people and is a signatory to the united nations convention on the rights of persons with disabilities (uncrpd). despite policy commitments, delivery in terms of changes in the lives of disabled south africans has, however, not always been as comprehensive as would have been wished (nhlapo et al. 2006). communication disability and transport access many individuals with a hearing impairment receive low incomes or rely on grants, creating a greater reliance on public transport (lennie 2005). research has described the communication between people with a hearing impairment and those without as difficult and problematic (jaworski & stephens 1998). in addition to the negative stigma associated with hearing loss, and the aggravation of repeatedly having to tell or remind people about their hearing impairment, many people with a hearing impairment commonly refuse to admit to their difficulties and subsequently avoid asking for assistance (lennie 2005). brennan and bally (2007) explain that individuals with hearing loss commonly have difficulties communicating against loud background noise as well as with speech discrimination and anxiety associated with hearing loss. these factors may surface in the commonly high noise-level mini-bus taxi environment. communication challenges may result from a variety of causes including dysarthria, stuttering, and problems communicating as a result of hearing impairments. this study is important for advocacy for individuals with communication disorders and to find suitable methods for speech-language pathologists and audiologists to prepare their patients for using taxis. methodology top ↑ research design this study adopted a qualitative research design consisting of semi-structured interviews to attain the data which was focused on taxi drivers’ experiences with their passengers who have a communication disorder to extract in-depth information from a small number of participants (webster & mertova 2007). this design allowed the participants to describe their experiences, beliefs and attitudes (french, reynolds & swain 2001) as well as allowing the researchers to explore where and why knowledge and practice may be absent in this area (marshall & rossman 2011). table 1: the demographic profile of participants. participants the participants of this study consisted of 10 taxi drivers who worked at one of the following taxi ranks in gauteng: chris hani baragwanath academic hospital (chbara), illovo, waverley and charlotte maxeke johannesburg academic hospital (cmjah). all had to have had experience with a passenger with a communication disorder. all 11 south african official languages were represented amongst the participants – corresponding to the cultures, beliefs and attitudes associated with each language – although not every participant spoke all 11 languages. additionally, the participants were chosen from four different taxi ranks in order to provide a larger representation of the population. data collection, procedures and analysis top ↑ research instrument data were collected through an interview process. the interviews were semi-structured and consisted of both open-ended and closed-ended questions, allowing for both descriptive and specific information to be obtained (kroll 2008). the location of each interview differed according to the participants’ preference, including inside their taxis and quiet areas within each taxi rank. participants were given the choice of having the interview conducted in english or in their language of choice with the aid of an interpreter. only one participant chose to have an isixhosa interpreter present during the interview and the participant utilised both english and isixhosa to express himself. the interpreter was trained by the researcher prior to the interviews, explaining ethical implications involved in research and data collection, the significance of translating verbatim, and non-bias on comments by the participants during the interview. the interpreter translated verbatim during the interview, allowing the researcher to probe. the interview questions covered the following domains: participant information, awareness and knowledge of communication disorders, questions about their experiences with passengers with communication problems, and attitudes towards them. pilot study a pilot study to pre-test the research tool and method was conducted with a sub-sample of two participants. it was fundamental in assuring content-validity – that all questions in the interview were appropriate to extract desired data – and ensuring that interview questions were understood by the participants (breakwell, hammond & five-schaw 2000). the pilot study led to the replacement of the terms ‘communication disorders’ and ‘language problems’ with ‘speech problems’ as a trend was that language problems referred to language barriers. procedure ethics clearance was obtained from wits university human research ethics committee. participant codes were used on all data collection forms to ensure confidentiality, with data accessed by the researchers only. the first author spent a few hours in a taxi to familiarise herself with the way in which taxis operate. the taxi drivers were initially unwilling, but agreed once they understood the aims of the research. the type of taxi driver that was interviewed was seen by the researcher to be more patient than others who would not wait in the rank to be interviewed. the findings of this study should be interpreted with the knowledge that participants may also be more patient with passengers who have a communication disability. data analysis the researcher audio recorded each interview then orthographically transcribed the data to achieve optimal documentation of the information given (poland 2001). at least 25% of the transcriptions were re-transcribed by an independent observer to ensure accuracy and integrity. thematic content analysis was implemented for analysis (patton 2002). the coding scheme employed the use of categorisation to group focal themes in the findings. following thematic content analysis, the researcher appropriately linked the taxi drivers’ experiences to structural organisation (brbich 2007), and further compared and contrasted the data with available literature in the field. an independent rater (an experienced speech-language pathologist) checked the ratings made by the researcher. results and discussion top ↑ taxi drivers’ awareness and knowledge of speech and language disorders only two participants claimed to know what a speech disorder was. one participant said that he had not had a passenger with a speech problem on his taxi but later described an experience in which the passenger being described had a speech problem. this example typified the lack of awareness amongst these participants. it was found that when asked to explain what a speech problem is, only four of the participants provided an explanation. although accurate, these descriptions lacked detail about speech disorders: ‘[i]t is a situation whereby someone can't actually speak …’; ‘… if you don't know how to pronounce things or like you don't even know how to talk’; ‘… somebody that can't speak totally’. only one participant acknowledged that although persons with a speech disorder may have difficulty articulating their message, or cannot produce speech, these individuals do not essentially have an impairment in understanding. this participant described an individual with a hearing impairment as an individual who, ‘… can understand me when i am talking but he cannot pronounce words like that’, and stated that he ‘… had someone on this taxi who didn't know how to talk but he was able to hear’. another trend was that these passengers were said to use sign language. this demonstrated an understanding that people with hearing impairments are individuals who ‘… can't actually speak and maybe at the end of the day they use sign language or something’. it seemed that although the participants accurately described a speech disorder as an inability or difficulty with speaking, the participants associated speech disorders with hearing impairment in the main. taxi drivers’ awareness and knowledge of hearing impairments hearing impairments were described as varied, ranging from hard of hearing to deaf: ‘at times there are some people who can't hear at all and there are some people who like can hear but the sound is very far away’. furthermore the participants’ awareness of the communication effects of a hearing impairment was evident. one participant mentioned that, ‘… you need to speak louder if they have that problem and some you need to use sign language’. taxi drivers’ attitudes and beliefs one participant mentioned that individuals, ‘… who can't hear it's painful because sometimes you speak to someone that doesn't hear and maybe you don't know that person can't hear’. the same participant explained: ‘[i]f somebody can't hear you so it's a problem because you can't communicate with that person because he can't hear you … if the person doesn't know how to speak, he can't communicate’. the belief of this participant seemed to be that the only mode of communication is verbal communication. although this participant has described individuals with a hearing impairment as having a ‘painful’ experience he does not have any negative beliefs about the cause of these impairments and believes them to be ‘just medical’ in nature. all other participants demonstrated positive attitudes toward people with communication disorders. individuals with communication disorders were not seen to be cursed or bad as this was ‘… just how they were born’. the majority of participants reinforced that these individuals had not carried out anything negative that resulted in a communication disorder, as ‘… they never made themselves like that’. the conclusion was that: ‘… the cause of that we don't know because there are certain thing that come in life that might make somebody to come out blind, come out without even hearing anything, can't even talk or open their mouth’. despite the cause being unknown, individuals with a communication disorder were described as ‘normal people’. the underlying belief seen was that ‘… they are people and we mustn't undermine them’: ‘you see if you are a human being, you know there are many people that are different, there are different characters. so the other people they don't speak, some they speak, some they speak another language you don't know. some they just speaking signs like i'm telling you’. ‘how could they be bad, how could they be bad people. it's not like, yah, if they did that to themselves i would say, yah well, they are bad people, but it happened you check. it's something that just, that just happened really so would you blame nature for what’? experiences of passengers with a communication disorder there were no reported occurrences whereby an individual with a communication disorder caused an inconvenience on a taxi. all participants were in agreement about these passengers: ‘[i]t's not a problem’. the other passengers on these journeys worked together in assisting the individuals with communication disorders where necessary. one participant added, ‘… that's what you do, make sure that our passengers work together till they get to their destinations’. when one participant was asked how the other passengers on his taxi responded to the passenger with the communication disorder, he replied: ‘i never realised how all the passengers reacted’. other passengers did not draw attention to the individual with a communication disorder on this particular taxi and it probably resulted in the problem-free journey. techniques used to communicate desired destination the most frequently used, and most highly recommended technique, was writing down the desired destination for the driver to read. one participant mentioned that a passenger on his taxi was able to communicate his destination by tapping another passenger on the shoulder who told the driver to stop the taxi. another participant explained that a passenger on his taxi was able to communicate his destination by making a ‘noise’, at which the driver knew to stop the taxi for him. another technique was speaking to the taxi marshal for assistance in using the appropriate taxi for their destination. although recommended by one of the participants, this is a technique only available to passengers at taxi ranks. one participant suggested over-articulating the destination – ‘… try and spell … on his mouth’ – as a technique for individuals who do ‘… not know how to write’. discussion of themes in the data top ↑ feelings of responsibility to passengers with a communication disorder participants felt a sense of responsibility to their passengers with communication disorders and other disabilities. one participant illustrated this by stating: ‘if you are a driver, you need to understand your passengers, you need to provide them with a good service so it's a must for us taxi drivers, if someone come to us we need to understand that if he or she has a problem with hearing; there is something we must do for them’. the participants explained that people with communication disorders and varying types of disabilities are welcomed on their taxis and are further encouraged to continue using this form of transport. the participants described that, as taxi drivers, they are responsible for ensuring that all their passengers, those with and those without disabilities, receive the best service. ‘we will keep on providing our best especially on the people who are being disabled someway’. the document transport for disabled people outlines this behaviour as it stipulates that all individuals, despite the type or severity of their disability, have the right to accessible public transport (national department of transport [ndot] 2000). the participants said that they needed to take the necessary measures in ensuring individuals with a communication disorder are understood on the taxi, that it is their responsibility to combat the communication barriers and find alternative modes of communication that are beneficial to both themselves and passengers with communication disorders. the participants in this study commented on their role of working in an industry serving the public. a common theme was significance patience and trying different techniques in supporting individuals with communication disorders. one participant added that as taxi drivers, ‘… [we] really make sure that we help where we can like get things right’. the ‘patience’ theme correlates with literature that explains impatience as a critical barrier to successful communication (howe et al. 2008). furthermore, the removal of time pressure improves communication for individuals with certain communication disorders (dickson et al. 2008; manning 2000). ‘at the end of the day we assist such a person’. the notion that individuals with communication disorders are ‘normal’ people downs (2011) explained that the effect of the individuals’ communication disorder is not confined by the physical manifestation of the disorder, as the emotional effects may be far more severe. this includes low self-esteem, feelings of worthlessness, and depression (kent 2004). these harmful emotions have a directly negative impact on the individuals’ quality of life. individuals with communication disabilities have described the negative stigma attached to their disability that has subsequently resulted in these individuals avoiding events or circumstances that require communication with other individuals, such as hearing-impaired people avoiding interaction with hearing individuals (lennie 2005). the participants in this study consistently described individuals with communication disorders as ‘normal people’, with one adding: ‘… [t]hey are people you know’. these remarks had no attachments of a negative stigma to people with communication disabilities. another common emotional attribute experienced by individuals with communication disorders is feeling socially isolated (tanner 2008), feeling alienated and different to the rest of society (dickson et al. 2008). these beliefs and feelings affect the individual's level of participation within society (siperstein et al. 2006). a fundamental theme in each interview was that individuals with communication disorders, ‘… are same like us … we are the same people’. this view contradicts the views held by individuals with the communication disorders as highlighted by tanner (2008). disability is context created, as societal attitudes as well as the infrastructure in place, or the lack thereof, contribute to the experience of being disabled (swartz & schneider 2006). with the approach of ‘… they are people and they are same like us’ and ’… they are people who must be treated like other people’, the participants in this study articulated that individuals with communication disorders should not feel isolated or separate from taxi drivers and the other passengers. furthermore the south african constitution and the integrated national disability strategy (inds 1997) state that all people are equal regardless of race, gender or disability. this theme of ‘sameness’ correlates and supports democratic principles of equality: ‘… [b]ecause they are human beings like us. we are the same. they are normal beings like us’. level of independence or taxi usage the goal of icf is to provide a standardised framework in describing human functioning and disability as an important component of health (ross & deverell 2004). the icf defines an individual's health in terms of anatomical and physiological features, as an individual's life is influenced by environmental and personal factors as well. the classification involves any disturbances in terms of ‘functional states’ associated with health conditions at bodily, individual and societal levels (ross & deverell 2004:14). regarding participation and independence, three main themes were revealed in this study: encouragement to use taxis; the ability for individuals with communication disorders to independently pay the taxi fare; and the debate on whether or not an individual with a communication disorder could use taxis independently. despite previous research that has found people with disabilities to be a challenge for taxi drivers, the participants in this study encouraged the continuous use of taxis as a means of public transport: ‘they must continue getting to our taxis just like that’. one participant added: ‘i think sign language is the right thing to do because you can't go with your child or your friend everyday so that they can do anything on taxi. sometimes you have other things to do. so he have to go alone so it's better to use the sign languages’. this statement also expressed the participant's belief that individuals with a communication disorder should use taxis as their means of access to functional participation. being able to independently pay the taxi fare impacts on an individual's level of independence. the participants commonly reported that these individuals ‘can count the money’, illustrating that individuals with a communication disorder do not need to rely on assistance in this activity. one participant added that he uses gestures to tell individuals with a communication disorder how much the taxi fare is. there were some differing viewpoints on whether individuals with communication disorders should use taxis independently or if they should be accompanied. those participants in favour of independence explained that, as the taxi driver, they will assist these individuals, whilst others added that with appropriate measures, such as the knowledge and use of sign language, these individuals are able to independently use public transport. on the other hand, some participants expressed the view that individuals with a communication disorder need assistance: ‘i haven't had one on his own. it is rare, one in ten, it is very rare’. furthermore, some of the participants in this study ‘… urge those people not to go by themselves’. the belief that individuals with communication disorders should be accompanied on taxis is contradictory to the principles of full participation and independence in society for all, as outlined in the constitution. conclusion top ↑ this study set out to determine taxi drivers’ experiences with passengers with communication disorders. findings revealed greater knowledge and awareness of hearing impairments compared to speech impairments; an interesting finding since hearing impairment is dubbed the ‘silent and invisible’ disability. however, in the context of communication disorders, it can be argued that hearing impairment can be the more ‘visible’ disability as individuals will utilise devices such as hearing aids and, or, use sign language to communicate. it is evident that this understanding of communication disorder as comprising mainly the use of sign language, with no distinction between a speech and a communication disorder, influenced their experiences with people who have communication challenges. participants’ understanding of sign language was that it is used equally by both individuals with speech and, or, hearing impairments. whilst some individuals with speech impairments utilise sign language, the participants assumed that individuals who use sign language have a communication disability. this perception detracts from the fact that sign language has been afforded equal status in relation to the other languages spoken in the country – and is not only used by people with communication disorders. this finding therefore has implications for advocacy groups (for example the pan south african language board, and deaf federation of south africa) concerned with establishing and promoting use of all languages in the country. moreover, this finding highlights an implication for clinical intervention which is the openness to sign language as a mode of communication by this population. the fact that participants viewed individuals with communication disorders as equals, with no negative stigma to a communication disorder, was a positive finding. participants regarded individuals with communication disorders as ‘good’, normal people. this finding, arguably, indicates a positive and embracing culture rather than a negative and discriminatory one, facilitating participation and inclusion. differing viewpoints on beliefs regarding individuals with communication disorders’ independent use of taxis were found. despite some participants’ strong stance of being accompanied whilst using taxis, none of the participants believed that individuals with communication disorders should not have equal access and usage of taxis. in accordance with various laws and legislation in south africa, many participants acknowledged their responsibility to their passengers with communication disorders and other disabilities. this finding was thought to possibly be influenced by the milder degrees of communication impairments that the participants might have been using as their points of reference: possibly, views might have been different had they dealt with individuals with severe communication disorders. regardless of the severity of the communication disorder, the most recommended technique to use when communicating one's desired destination to a taxi driver in the current study was writing the destination on paper. although this is a beneficial proactive technique for both taxi drivers and individuals with varying communication disorders, it does limit the participation level of the individual to only indicating destination. it also assumes that the written language skills and motoric skills required for writing are intact; this is if literacy is not an issue. a communication system that also allows for use of pictures is crucial in such a context; this is now readily available to a majority of people with access to cell-phones with mobile applications. clinical interventions with individuals with communication disorders should incorporate such techniques to increase participation in this context. current findings should be interpreted within the identified limitations in the design of the study. the small sample size, as well as restriction to the gauteng province, limits generalisation of the findings across the south african population. it is also important to highlight that participants in the study were seen as more patient than the other taxi operators. nonetheless, the results of this study provide baseline knowledge of taxi drivers’ experiences, attitudes and knowledge of individuals with communication disorders, with implications for future research. the findings of this study also provide speech-language pathologists and audiologists with useful information regarding areas in which advocacy is required. this includes creating an awareness of different speech impairments and ensuring the execution of the inds's and south african constitutions’ documented rights and transport legislations for individuals with disabilities. internationally, public transportation is moving forward in identifying individuals with disabilities as important: crewe and zola (2001) explained that developments are in the process of accommodating individuals with disabilities for both long and short distance travelling. however, recommendations have been made largely to accommodate physically disabled individuals. when considering communication disorders, public awareness should be promoted so that advances can be made in accommodating individuals with communication disorders. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions s.g. (university of the witwatersrand), m.m. (university of the witwatersrand) and k.k-s. 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taxis as part of a sustainable public transport system in south africa’, document transformation technologies, 642–646. walters, j., 2008, ‘overview of public transport policy developments in south africa’, research in transportation economics 22, 98–108. http://dx.doi.org/10.1016/j.retrec.2008.05.023 watermeyer, b., 2006, disability and social change: a south african agenda, human resources research council, cape town. webster, l. & mertova, p., 2007, using narrative inquiry as a research method: an introduction to using critical event narrative analysis in research on learning and teaching, routledge, abington. world health organization, 2001, international classification of functioning, disability, and health: icf, world health organization, geneva. world health organization, 2011, world report on disability, world health organization., geneva. abstract introduction methods results and discussion limitations of the study conclusion acknowledgements references about the author(s) nondwe b. mlenzana faculty of community and health sciences, university of the western cape, south africa arne h. eide faculty of medicine and health science, university of stellenbosch, south africa sintef, oslo, norway jose m. frantz faculty of community and health sciences, university of the western cape, south africa citation mlenzana, n.b., eide, a.h. & frantz. j.m., 2018, ‘perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the western cape’, african journal of disability 7(0), a415. https://doi.org/10.4102/ajod.v7i0.415 original research perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the western cape nondwe b. mlenzana, arne h. eide, jose m. frantz received: 12 july 2017; accepted: 22 june 2018; published: 25 oct. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: understanding caregivers’ views on rehabilitation services is important as it may assist in informing healthcare services and patient management. objectives: the aim of this study was to explore caregivers’ perceptions and satisfaction regarding rehabilitation services in the western cape, south africa, and to inform clinical practice and policy in this emerging field. method: this study used a descriptive, qualitative design using in-depth interviews with conveniently selected participants. interviews were conducted with 13 caregivers of patients with: amputations (3), cerebrovascular accidents (5) and neuromuscular disorders (5). thematic content analysis was conducted with the transcripts. results: four key themes emerged, which were (1) financial difficulties, (2) caregiver and therapist relationships, (3) facility management and (4) caregiver experience with service delivery. conclusion: based on the participants’ feedback, the rehabilitation services seem to be meeting the basic rehabilitation needs of the patients; however, the needs of the caregivers require attention. introduction access to rehabilitation is, according to the united nations convention on the rights of disabled people (crdp) (un 2006), a right for persons with functional problems (article 26). however, according to the world report on disability (who 2011), such services lack both in quantity and quality in lowand middle-income countries (lmics). research on rehabilitation in lmics may be one of the entry points for improved access and quality of services. the role of rehabilitation cannot be underestimated in the reintegration of the patient into his or her community. caregivers often play a central role in determining the success of the rehabilitation process (alexandrou 2014). however, caregivers’ perspectives on rehabilitation are often side-lined, both in practice and in research (tin, mehta & rowlands 2006). to improve rehabilitation services in lmics, it is necessary to hear the voices of caregivers in addition to the users themselves and professional rehabilitation workers. this study sets out to explore caregivers’ perspectives on rehabilitation within the context of rehabilitation services in the western cape, south africa. the integrated national disability strategy in south africa defines rehabilitation as ‘ways of helping people with disabilities to become fully participating members of society, with access to all the benefits and opportunities of that society’ (office of the deputy president 1997, chapter 3), including not only the patient and the health professionals but also the caregiver as a key contributor to rehabilitation (witness 2010). for effective rehabilitation, excellent communication is required between the health professionals regarding the patient and, in many instances, the caregiver becomes the channel of communication. in addition, rehabilitation professionals rely on caregivers to become extensions of the intervention programmes and to ensure that exercise takes place at home. as the caregiver becomes co-manager of the patient’s care plan, it is essential that the caregiver understands the patient’s needs and challenges. feedback from patients and other key stakeholders, such as caregivers, is required if deficiencies are to be identified and improved. in addition, it is important that the impact of the caregiving process is understood to provide rehabilitation professionals with insight to facilitate this process. the burden experienced by caregivers is usually considered to be both task-oriented as well as emotionally challenging (edwards 2008). the actual tasks performed by the caregiver are dependent on the physical dependency of the patient and the emotional challenge is influenced by the mental and emotional health of the patient (edwards 2008). therefore, edwards (2008) emphasises that the needs of the caregivers must be understood and supported. ability to cope with both the practical tasks and the emotional challenges is paramount to achieving a healthier caregiver and thus, ultimately, a healthier patient (edwards 2008). in addition to understanding the needs of the key role players in rehabilitation, it is important to obtain their assessment of and to what extent they are satisfied with the services provided. while customer satisfaction in the marketing industry is linked to increased sales and the generation of profits (woodside et al. 1998), in healthcare it ensures the provision of quality outcomes, which is the goal of every health facility (steinwachs & hughes 2008). it is highlighted in studies carried out in different countries that healthcare providers find it challenging to satisfy the needs of the patients. often, providers do not meet specific and expected outcomes of service delivery as there are shared barriers to these outcomes (crisp 2000; van til et al. 2010; williams & bowie 1993). because of the multidimensional nature of satisfaction, researchers have, over time, continued to develop models to explain the factors that influence satisfaction (conway & willcocks 1997; fiebelkorn 1985; woodside et al. 1998). based on literature (crisp 2000; mlenzana et al. 2013), it is envisaged that within the health setting, patients enter a service setting with needs, wants and expectations. the extent to which the provider fulfils them defines the degree to which the patient will be satisfied. research regarding the needs of the caregiver and the barriers to and the facilitators of the caring process is scarce. according to kruzich et al. (2003), caregiver involvement in the rehabilitation process requires attention. however, research evidence suggests that support for caregivers is often not forthcoming. studies have been conducted in south africa focusing on patient and service provider experiences with rehabilitation services (kumurenzi et al. 2015), as well as on caregivers of children with disabilities (saloojee 2011). thus, the current study builds on the available knowledge regarding perceptions of rehabilitation services by exploring the perceptions and satisfaction of caregivers of adult disabled patients regarding rehabilitation services in the western cape, south africa. the research question is: what are the perceptions and levels of satisfaction of caregivers regarding rehabilitation within the context of selected rehabilitation centres in the western cape, south africa? methods design the study used an exploratory, descriptive, qualitative design, using in-depth interviews to explore the perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the western cape. sample the target population and inclusion criteria for this study involved all caregivers who volunteered to accompany people with disabilities to selected rehabilitation centres in the western cape, south africa. the rehabilitation centres were selected based on the fact that they were primary healthcare centres as well as the populations that they service. people with disabilities are consulted through a referral system or through self-referral to the rehabilitation centres and they do not pay for services as healthcare services should be accessible for all. the sample consisted of caregivers of 13 individuals, conveniently selected from those patients with physical disabilities who had received rehabilitation services at the identified centres. the persons receiving rehabilitation at the centres include those with conditions such as stroke, amputations, head injuries, spinal cord injuries and neuromuscular disorders leading to disability. instrumentation an interview guide that consisted of open-ended, non-directive questions was used to explore the caregivers’ perceptions of and satisfaction with the rehabilitation services that their family member was receiving. an initial open-ended question was used to explore the caregivers’ perceptions of the rehabilitation service. probes were used to obtain in-depth descriptions of their perceptions and satisfaction with the services. to ensure trustworthiness (lincoln & guba 1985) in this study, the interview guide was developed after the researcher conducted a systematic review, which focused on barriers and facilitators to rehabilitation services (mlenzana et al. 2013). themes that emerged from the systematic review were: financial difficulties, caregiver and therapist relationship, facility management and caregiver experience with service delivery, and were used as predetermined themes of this study. the interview guide was developed and reviewed by individuals considered experts in the area of disability and rehabilitation. participants who were recruited were fluent in english and afrikaans. procedure twenty-six suitable participants were telephoned and, following an explanation of the purpose of the study, were asked to participate. however, of these participants, only 13 were available for interviews and some indicated a willingness to participate but did not arrive on the particular day. an appointment to conduct the interviews was made with those who agreed telephonically to participate in the study. the researcher followed up on the participants who did not arrive, and they stated that they had other commitments on the day of the interview. informed written consent was obtained from all participants before each interview was conducted. participants were assured of anonymity and their right to withdraw from the study. in addition, permission to audio-record the interview was also obtained from the participants. interviews were conducted during june 2011, using in-depth interviews, and were carried out in the caregivers’ homes or at the rehabilitation centres at a time that was suitable for them. the audio-recordings were transcribed verbatim. the participants were given an option as to the language in which the interviews could be conducted. eight of the interviews were conducted in afrikaans. the research assistant who was with the researcher was fluent in both english and afrikaans. interviews were conducted in both languages to accommodate the group and the interview guide was prepared in both english and afrikaans. data analysis all taped interviews were transcribed verbatim. the transcripts were then compared to the voice recordings to verify accuracy. the afrikaans transcripts were translated into english after the recordings were verified. transcriptions were translated from english and back to the interviewees’ language to ensure validity. data were analysed using a coding process to sort the information according to categories within the predetermined themes. data analysis was performed using the following predetermined themes: financial difficulties, caregiver and therapist relationship, facility management and caregiver experience with service delivery. within the predetermined themes, categories were identified by the first author and consensus was reached through discussion with the second author. all categories were supported with quotes from the interviews. ethical considerations ethical clearance to conduct the study was obtained from the senate research ethics committee of the university of the western cape, reference number: 10/1/3. results and discussion characteristics of the participants the study sample consisted of 13 participants with a mean age of 47 years for the caregivers and 59 years for the patients. the majority of the caregivers were female and in most instances the spouse of the patient (table 1). table 1a: caregiver demographics. table 1b: patient demographics. main findings the four main emerging themes and categories are presented in table 2. quotes to support the themes will be presented below. table 2: emerging themes and categories. financial difficulties the majority of caregivers interviewed voiced that they experienced financial difficulties. the most common financial challenge was the cost associated with transportation to the rehabilitation service. six of the caregivers expressed that they frequently experienced difficulty with transportation when travelling to and from centres. the challenges included not having money to pay for transportation to the rehabilitation service: ‘… every now and then i had to borrow money … for the taxi.’ (caregiver 9) ‘… there isn’t always money for the taxi.’ (caregiver 12) ‘… to go there and back, we pay r100 which is too much for us.’ (caregiver 3) a similar situation was highlighted in south africa more than 10 years ago by whitelaw et al. (1993), who reported that rehabilitation at a tertiary hospital in cape town was a challenge owing to poor attendance caused by transport problems. likewise, de la cornillere (2007) reported similar findings where transport was the major problem affecting attendance at rehabilitation sessions at one of the chcs in cape town. this remained a challenge even more recently when kahonde et al. (2010) reported similar challenges. caregiver and therapist relationship categories identified within this theme included caregiver integration in the rehabilitation process, exchange of information between the therapist and the caregiver, and trust in the relationship between caregiver and therapist. the majority of caregivers expressed that they received education and were included in the rehabilitation process: ‘… i sat in on the session …’ (caregiver 2) ‘… they give me exercises, they write it down and draw it …’ (caregiver 12) ‘… they were not … people that you had to be afraid of.’ (caregiver 1) contrary to previous studies (kahonde et al. 2010), the participants in this study reported a good interaction with their therapists and indicated that they received the necessary information. a review conducted by mlenzana et al. (2013) highlighted the importance of a positive caregiver-therapist relationship. facility management caregivers highlighted that access to rehabilitation services was not a problem even with the patients’ use of assistive devices: ‘… very easy (to access centre with wheelchair) …’ (caregiver 1) however, processes within the centres were a challenge and these included accessing files prior to therapy and obtaining appointments: ‘… the department where she has to go (for therapy) is there at the back. her files are here in front. the distance is far.’ (caregiver 3) ‘… it’s the administration that makes this a disaster.’ (caregiver 2) at least eight of the caregivers felt that the frequency of appointments was insufficient. caregivers highlighted the long waiting periods between follow-up sessions: ‘… for an appointment … one month or even two months …’ (caregiver 5) ‘they are full, now i just have to be patient …’ (caregiver 13) the primary health care approach refers to accessibility as one of the components that is important for service delivery. authors brereton and nolan (2002) confirmed in their study that, during visits to the health centres, caregivers noticed that healthcare professionals were busy and, as a result, patients had to wait longer to receive care within the health centre. caregivers in this study were dissatisfied with the management of patients at the rehabilitation centres and expressed irritation with service delivery as things were not to their level of satisfaction during the visit. it is clear that caregivers need better service delivery from these centres as they experienced the visits as time-consuming and disorganised. this shows that the problem of overcrowding at the rehabilitation centres causes dissatisfaction regarding the service provided. caregiver experience with service delivery during the interview process, it became evident that the quality of care a caregiver is able to provide is influenced by support for his or her own physical and emotional health. the caregivers highlighted that they were not always physically capable of actively assisting the patient, and support from others was welcomed: ‘i had a friend … if i had to go somewhere, then there was someone … (to give physical assistance).’ (caregiver 1) in addition, it was evident that caregivers often neglected their own emotional needs. caring for another person seems to have an impact on the caregivers’ stress levels: ‘it is a full time job. i became very sick afterwards … i did not take notice of myself …’ (caregiver 1) ‘… sometimes it was very stressful …’ (caregiver 9) the findings reported by the carers regarding their physical and emotional health are similar to other studies (mclaughlin et al. 2010; shewchuk et al. 2004) that highlighted how the impact of living and caring for people with disabilities, whether physical or mental, affects various aspects of the caregivers’ lives. thus, although the perceptions of the caregivers regarding rehabilitation services were primarily positive, it is evident that there is a need for consideration to be given to incorporate the carer in the process of rehabilitation with a focus on ways to decrease the burden of caring. shewchuk et al. (2004) highlighted the need for rehabilitation interventions that focus on helping caregivers develop skills and strategies to address patient-centred emotional issues. limitations of the study the findings of this study cannot be generalised for all caregivers exposed to rehabilitation services as this study was only at the primary healthcare level as it was an in-depth qualitative study. however, the findings help us to gain insight into the experience of the caregivers. conclusion the perceptions of the caregivers indicate that they do face challenges and, if we are to improve rehabilitation services, rehabilitation professionals should improve their interactions with the caregivers. currently, there is no intervention within the rehabilitation context that addresses the needs of the caregiver. the involvement of the caregiver with the rehabilitation process within the treatment realm is evident but support for reintegration back into the society is lacking. acknowledgements the authors would like to thank the journal reviewers of this article and mr david hughes, a disability consultant in namibia, for his invaluable contributions. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions the article was conceptualised and drafted by n.b.m and j.m.f. a.h.e. contributed to the content of the article and the revisions. references alexandrou, s., 2014, caring for the caregiver: the important role of family in rehabilitation, viewed 12 december 2017, from https://www.burke.org/blog/2014/11/caring-for-the-caregiver-the-important-role-of-family-in-rehabilitation/23 brereton, l. & nolan, m., 2002, ‘seeking’: a key activity for new family carers of stroke survivors’, journal of clinical nursing 11(1), 22–31. https://doi.org/10.1046/j.1365-2702.2002.00564.x conway, t. & willcocks, s., 1997, ‘the role of the expectations in the perceptions 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understand problems experienced by family caregivers of persons with severe physical disabilities’, journal of clinical psychology in medical settings 11(3), 141–150. https://doi.org/10.1023/b:jocs.0000037608.55768.df steinwachs, d.m. & hughes, r.g., 2008, health services research: scope and significance, viewed 19 september 2014, from http://www.ncbi.nml.nih.gov/books/nbk2660/?report tin, n.g., mehta, k., & rowlands, a., 2006, family caregiving in singapore, viewed 17 december 2017, from http://www.fas.nus.edu.sg/rg/doc/family/family_wp.pdf united nations, 2006, convention on the rights of person with disabilities and optional protocol, new york, viewed 18 march 2014, from www.un.org/disabilities van til, j., drossaert, c., punter, r. & ijzerman, m., 2010, ‘the potential for shared decision-making and decision aids in rehabilitation medicine’, journal of rehabilitation medicine 42, 598–604. https://doi.org/10.2340/16501977-0549 world health organization, 2011, world disability report, who, world bank, geneva. whitelaw, d.a., meyer, c.j., bawa, s. & jennings, k., 1993, ‘post-discharge follow-up of stroke patients at groote schuur hospital – a prospective study’, south african medical journal 84, 11–13. williams, m. & bowie, c., 1993, ‘evidence of unmet need in the care of severely physically disabled adults’, british medical journal 306, 95–98. https://doi.org/10.1136/bmj.306.6870.95 witness, m., 2010, ‘impact of caregiver education on stroke survivors and their caregivers’, phd thesis, faculty of health sciences, university of witwatersrand. woodside, a.g., frey, l.l. & daly, r.t., 1998, ‘linking service quality, patient satisfaction and behavioural intention’, journal of health care marketing 7, 61–68. abstract introduction research method and design validity and reliability results discussion limitations of the study conclusions and recommendations acknowledgements references about the author(s) juan bornman centre for augmentative and alternative communication, university of pretoria, south africa diane nelson bryen centre for augmentative and alternative communication, university of pretoria, south africa centre for augmentative and alternative communication, temple university, united states enid moolman centre for augmentative and alternative communication, university of pretoria, south africa john morris shepherd center, atlanta, united states citation bornman, j., bryen, d.n., moolman, e., & morris, j., 2016, ‘use of consumer wireless devices by south africans with severe communication disability’, african journal of disability 5(1), art. #202, 9 pages. http://dx.doi.org/10.4102/ajod.v5i1.202 original research use of consumer wireless devices by south africans with severe communication disability juan bornman, diane nelson bryen, enid moolman, john morris received: 04 july 2015; accepted: 26 sept. 2015; published: 19 feb. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: advancements in wireless technology (e.g. cell phones and tablets) have opened new communication opportunities and environments for individuals with severe communication disabilities. the advancement of these technologies poses challenges to ensuring that these individuals enjoy equal access to this increasingly essential technology. however, a paucity of research exists. objectives: to describe the nature and frequency with which south african adults with severe communication disabilities have access to and use wireless devices, as well as the types of activities for which wireless devices are used. method: survey research was conducted with 30 individuals who use augmentative and alternative communication (aac) technology using the survey of user needs questionnaire developed in the united states, and localized to the south african context. results: all participants, despite their limited education, unemployment and low economic status, owned and/or used mainstream wireless devices. slightly more than half of the participants (53.3%) needed adaptations to their wireless devices. advantages of using wireless devices were highlighted, including connecting with others (through using text messaging, social networking, making plans with others, sharing photos and videos with friends), for leisure activities (e.g. listening to music, watching videos, playing games), and for safety purposes (e.g. to navigate when lost, using the device when in trouble and needing immediate assistance). conclusion: these wireless devices offer substantial benefits and opportunities to individuals with disabilities who rely on aac in terms of independence, social participation, education and safety/security. however, they still do not enjoy equal opportunity to access and use wireless devices relative to the non-disabled population. introduction at the turn of the century africa had only 15 million cell phone subscribers. that number grew to 387.7 million over the next decade. by 2011, africa became the second largest mobile phone market after asia (dlamini zuma 2014). according to the pew research center (2015), today cell phones (portable telephones that use wireless cellular technology) are as commonly used in south africa as they are in the united states. smartphones (those that run complete operating systems and that can access the internet and applications with features such as calendars, media players, gps navigation, and web browsing) are not as widely used (bryen & moolman 2015). slightly more than 34% of south africans own these devices compared to 64% in the united states (pew research center 2015). the rapid growth of wireless technologies in south africa has bypassed the earlier need for landlines. today, landline penetration in sub-saharan africa is close to zero with only 6% of south africans reporting having a working landline phone in their household (pew research center 2015). consequently, wireless devices, including cell phones and smartphones, are a critical means of communication and information access in south africa. access to these wireless technologies has dramatically increased communication, expanded commerce, and improved access to information via the internet. these technologies have a tremendous potential for all south africans, including those with disabilities. according to the center for an accessible society (2014), mobile cellular technologies offer remarkable possibilities to enhance the quality of life and increase the independence of people with disabilities. for example, persons with severe communication disability can now log in and order groceries online, shop for appliances, research health questions, participate in online discussions, catch up with friends or make new ones. however, there is a paucity of information that describes the use of wireless technologies by those individuals with severe communication disabilities who cannot rely on their natural voice to meet their daily communication needs. these individuals typically have little or no functional speech (bornman 2015). although no prevalence figures are available for south africa, prevalence studies shows that approximately 1.3% of the world population cannot rely on their natural speech to meet their daily communication needs (beukelman & mirenda 2013). this translates to 702 000 south africans if the current south african population size of 54 million people is used (statistics south africa 2014). communication disability results in these individuals being restricted in their participation in all aspects of life – education, employment, family life and citizenship. augmentative and alternative communication (aac) technology involves multiple modes of communication, including specialized devices with synthesized or digitized speech. wireless devices, such as cell phones, smart phones and tablets can also act as communication devices (alzrayer, banda & koul 2014). they allow for voice input, text messages, picture capturing, e-mailing, internet access and gaming (york & fabrikant 2011). the availability of social media, such as facebook, linkedin and twitter on many of these wireless devices has further expanded communication opportunities for these individuals (beukelman & mirenda 2013; caron & light 2015). research from the united states reported that individuals with severe communication disabilities and who have access to wireless technologies use them for much the same activities as the larger disability community (caron & light 2015; mcnaughton & light 2013). unfortunately, these individuals have less access to these technologies, lagging behind the larger disability community who are already lagging behind their peers without disability (morris & bryen 2015). recognizing the importance of these wireless technologies, the united nations identified them as a critical success factor for the inclusion of persons with disabilities in their post-2015 agenda (g3ict 2013). the un further estimated that such technologies have the potential for making significant improvements in the lives of the 15% of the world population who have some form of disability. similarly, 14 articles of the united nations convention on the rights of persons with disabilities mandate or address access to information and communication technologies (g3ict 2013). in south africa, as worldwide, these mainstream wireless devices can improve the lives of south africans with disabilities, especially those who have severe communication disabilities. however, little is known about their access to and use of these technologies due to a paucity of research in this area. therefore the question remains as to the degree to which south african adults with severe communication disabilities have access to and use wireless devices, as well as the type of activities for which wireless devices are used. research method and design research aims the primary aim of this research was to describe the nature and frequency with which adults who have severe communication disabilities and who use aac systems in south africa have access to wireless devices, and to describe the activities for which these devices are used. four sub-aims informed the primary research aim: describe the types and use of specialized assistive devices used by participants; determine wireless device ownership and describe the source(s) used to select these devices; describe the use, importance, and satisfaction with wireless devices, the types of activities participants engage in, as well as their frequency; and describe participants’ recent experiences with their primary wireless devices. design a descriptive survey design (mcmillan & schumacher 2010) was used to describe the responses of 30 literate south african adults with severe communication disabilities who use aac systems. information was obtained through the completion of the survey of user needs (sun 4) questionnaire (morris, mueller & jones 2014) that was adapted specifically for the south african context. materials sun was launched in the united states in 2002 and has been updated three times in order to keep up with the rapid pace of technological change (morris et al. 2014). the most recent version (sun 4) was launched in 2012 and can be viewed at http://www.wirelessrerc.org/content/projects/sun-overview. sun 4 covers five main areas of inquiry. part 1 focuses on relevant biographical data. the focus of part 2 is participants’ abilities and difficulties, as well as types of assistive devices that they use. part 3 focuses on participant’s use of mainstream wireless devices, and part 4 on activities for which the wireless devices are used, and how often they are used. part 5, which focuses on wireless service providers, was omitted in this research, as most of the participants did not know the answers to these questions. validity and reliability in order to enhance the content validity of sun 4, interviews were conducted during its development with subject matter experts in the wireless device industry and regulatory agencies, accessibility and assistive device experts, advocates for people with disabilities and people with disabilities themselves. a few items were adapted from other established survey research projects, including the national health interview survey conducted by the u.s. centers for disease control and prevention and the pew research center’s on-going research on wireless device use (duggan & smith 2013). for the purposes of this study, sun 4 had to be slightly modified for the south african context. five specific adaptations were made: (1) ethnicity was adapted to include the accepted south african ethnic groups; (2) highest level of education had to include education at a special school; (3) household income was measured in south african rand, and a distinction was made between households with an income below r60 000.00 per annum and those above, as individuals who earn below r60 000.00 are exempt from paying personal income tax (tax statistics 2008) and hence form the lower socio-economic status group; (4) examples of mobile technologies specific to the south african context were included; and (5) cost of apps was changed to south african rand. reliability of the data was enhanced by using trained research assistants who assisted participants to complete the questions (babbie & mouton 2001). following this, all participants were asked if there was anything additional that they would like to add. participant recruitment three recruitment strategies were used. the first was e-mail recruitment from participants and alumni of the fofa project, which is a unique programme to empower adults with severe communication disabilities who use aac, and which has been presented annually since 2005 at the university of pretoria. fofa is a sotho word, meaning to fly or to soar, and fofa participants actively engage in a week-long seminar designed to teach skills such as how to effectively communicate using their aac devices and then applying these newly acquired skills to everyday situations (http://www.up.ac.za/centre-for-augmentative-alternative-communication/article/56192/about-fofa). this first recruitment strategy yielded 15 participants. second, 11 potential participants who use aac systems and who were known to the researchers were contacted via e-mail. this resulted in seven participants agreeing to participate, surpassing the accepted 50% response rate (babbie & mouton 2001). third, three institutions for adults with disabilities were contacted and eight potential participants identified. all provided consent and completed the survey. unfortunately, the three means of participant recruitment is likely to have resulted in a biased sample. sample bias is likely due to an over-representation of participants who have stronger literacy, higher education and greater supports. data analysis descriptive statistics formed the basis for the data analysis (mcmillan & schumacher 2010). information from sun 4 was coded in survey monkey and frequencies and percentages were calculated for purpose of analysis. participant description a total of 30 literate south african adults with disability who have little or no functional speech and who use aac systems participated in this research. demographic information is provided in table 1. only 13.3% of the participants completed the survey independently. the majority of participants were white men between the ages of 18 and 49 years. most participants had attended special schools, lived in urban areas with someone else, were unemployed and had a low socio-economic status. table 1: participant demographic information (n = 30). table 2 shows that all participants reported that they had difficulties speaking so that other people could understand them. additionally, the majority had motor disabilities (i.e., difficulties walking, climbing stairs and using their arms, hands, and fingers). some reported that they had difficulty concentrating, remembering and making decisions (26.7%) and some experienced frequent worry, nervousness and anxiety (16.7%). few had sensory difficulties such as difficulty seeing (13.3%) and difficulty hearing (6.7%). table 2: type of difficulty experienced by participants (n = 30). procedure participants received information about the research and were requested to complete an informed consent letter. the participants recruited though fofa completed their surveys at the university of pretoria, whilst participants recruited via e-mail completed their surveys at home, and participants recruited from institutions completed their surveys at their respective institutions. most were individually assisted by trained research assistants in completing the survey, with a small percentage completing it independently. the same instructions were given throughout, using the questions as stipulated in the sun 4 survey. on average it took the participants between 60 and 90 minutes to complete the survey. ethical considerations ethics approval was obtained from the faculty of humanities ethics committee, university of pretoria (reference number gw20150315hs). three main ethical considerations were respected. firstly, the principle of voluntary participation was paramount, since participants were not pressured into participation. it was reiterated that they could withdraw from the research at any time without any negative consequences. secondly, informed consent was obtained (campbell et al. 2010). all participants received written information about the nature of the research, informing them that it posed neither risks nor benefits. information and consent letters were written at a fourth-grade reading level using the flesch-kincaid grade level computer analysis (mcclure 1987) to ensure readability. they were also informed about how data would be analysed and distributed and were offered the option to receive a copy of the article following publication. finally, confidentiality (smith 1995) is seen in that data were coded to protect participants’ individual data and all identifying information was removed from this article. no identifying information was made available to anyone who was not directly involved in the research. results results are described according to the four sub-aims of the research. use of specialized assistive devices given the participants’ multiple disabilities detailed in table 2, it is not surprising that a variety of specialized assistive devices were used. all used some form of aac, consisting of speech-generating aac devices (56.7%), text-to-speech software (46.7%), aac communication boards (40.0%), or a combination of these. many used mobility devices, especially wheelchairs (70%). very few used specialized devices to aid their sensory disabilities, such as hearing aids or screen readers. ownership of wireless devices and source(s) used to select these devices all participants reported that they owned a primary wireless device, such as a cell phone, smartphone or tablet. a primary wireless device was defined as the device they used most, whereas the secondary device was the one they used secondarily, either for particular tasks or in certain contexts. table 3 shows that 23.3% owned a basic phone, whilst two-thirds owned a smartphone, including android-powered smartphones (23.3%), blackberry devices (20%) and windows-powered smartphones (20%). iphones were used less frequently. additionally, 10% of respondents reported owning a tablet: ipad (7%), or android tablet (3%). table 3: ownership of primary and secondary wireless device(s) (n = 30). approximately one-third (33.3%) of the participants owned a secondary wireless device such as an android smartphone, iphone, and an android-powered tablet or ipad. however, due to space limitations, this article focuses only on primary wireless devices. participants were asked about use of landlines in their place of residence. less than half (46.7%) reported that they had access to a working landline telephone at home and only one person reported that he used it to make or receive calls. participants reported using a variety of sources to select their wireless devices. one-third (33.3%) bought their wireless devices based on recommendations from a friend, family member or healthcare professional. an additional 30% obtained them as a donation or had them on loan. less frequently, participants based their decisions on television, radio or magazine advertisements (13.3%); on a salesperson’s advice (13.3%); on the features for persons with disability shown on the product label (13.3%); or on website information from either wireless service companies (6.7%) or device manufacturers (6.7%). use, importance, satisfaction, ease and changes made to primary wireless devices and type and frequency of engagement table 4 shows that most participants indicated that they used their wireless device for personal use only (66.7%), with a smaller percentage using these technologies for both professional and personal use (26.7%). almost all rated the importance of their device as either ‘very’ or ‘somewhat important’, irrespective of the type of device. similarly, 83% were either ‘very satisfied’ or ‘somewhat satisfied’ with their device. table 4: use, importance, satisfaction, ease, as well as changes made to current primary wireless device (n = 30). table 4 also shows that 73.3% of the participants reported that their wireless device was either ’very easy’ or ’easy to use’. however, 26.7% reported that it was ’somewhat hard to use’ or that they ’couldn’t use it without help’. more than half of the participants had made some additions or adaptations to their ‘off-the-shelf’ devices. these included adding commercially available physical accessories (36.7%) or adding software (26.7%). improvised solutions or adding of assistive devices and other solutions were used to a lesser degree (6.7%). these data suggest that off-the-shelf, specialized, and improvised adaptations were needed to use their wireless devices. participants were asked about their wireless activities. results are described in terms of how frequently they use their primary wireless device (table 5). table 5: frequency of primary wireless device usage irrespective the type of activity (n = 30). this section was further expanded by asking about the types of activities that participants engaged in with their primary wireless device (table 6), frequency of engagement in these activities as well as their use of social networking sites and apps (table 7). table 6: participants’ wireless activities and their frequency of use (n = 30). table 7: frequency of participants’ wireless activities: text messaging, voice calling, social media and downloading apps (n = 30). overall, the majority reported using their primary wireless device either several times each day (66.7%) or at least once daily (10%). text messaging was used by most participants (80.0%) with a variable degree of frequency. text messaging was followed by keeping a directory of contacts (73.3%), sharing photos or videos online (66.7%), and listening to music (60.0%). more than half used their wireless devices for social networking, with 67% noting that they have a profile on facebook, twitter and/or linkedin. frequency of use of these social working sites ranged from several times a day (43.3%) to not at all (33.3%), with facebook being the favoured social networking site (80%). only 12% did not use social networking sites on a daily basis. regarding a social network profile, many respondents had at least one social networking profile (46.7%). web-browsing was also used by 56.7%, and half of the participants used their wireless device for voice calling despite their difficulties with spoken language. using the calendar for appointments was reported by 43% and watching videos by 40.0%. sending and receiving emails (36.7%), playing games (33.3%), and navigating to find their way (23.3%) was also used with varying degrees of frequency. only 13.3% of the participants used the voicemail option, and 10.0% used voice notes or reminders. ‘other’ activities included typing stories and poems (6.7%), listening to the radio (3.3%) or as an augmentative communication device (3.3%). table 7 also shows that 43.3% of the participants stated that they used one or two apps on their wireless devices. some of the apps that the participants used were facebook, whatsapp, bbm, proloquo2go, music, photos, super sport, microsoft office, viber, teamviewer, quick support and youtube. less than half of the respondents (43.3%) stated that they had never paid for an app and only downloaded apps that were free. another 23.3% stated that their wireless device could not download apps, whilst 23.3% stated that, although their device could download apps, they did not download any. a further 6.7% each said that they spent r10.00 or less, between r10.00 and r50.00 or more than r200.00 on an app, or that they did not know what the cost of their apps were. finally, participants were asked whether there was anything that they would like an app to do that the current apps could not. some responded that they would like an app that constantly linked their wireless device to their computer so that they did not have to re-launch the teamviewer app and get it all linked up again each time they switched it on. another reported wanting a calculator, instagram, text-to-speech app, whatsapp with text-to-speech, link everything e.g., phone, laptop, tv (replace remotes) and watch dvds. recent experiences with their primary wireless devices participants were asked about their experiences with their wireless devices during the past 30 days. table 8 shows that participants used their devices most frequently to make plans with others (66.7%), for entertainment (63.3%), and to get information that they needed right away (46.7%). table 8: recent experiences with primary wireless device (n = 30). some participants identified having frustrations using their device, including that their devices took too long to download something (30%), having difficulty entering a lot of text (30%), and having difficulty reading something on their device because the screen was either too small or the screen reader could not read the text aloud (16.7%). in contrast, some respondents reported a certain reliance on their devices: 30% reported having trouble doing something because they did not have their device with them; 26.7% reported being in an emergency situation when their device helped them. finally, 13% indicated that they turned their device off for a period of time, just to get a break from using it. discussion the findings of this research yielded important information about the use of mainstream wireless devices by a small, non-representative sample of south african adults with severe communication disabilities. foremost, it must be noted that all participants in this research own and use mainstream wireless devices, such as cell phones, smartphones, or tablets. this is a surprising finding given that many of the participants had limited education, were unemployed, and came from households with low socio-economic status. however, it should be remembered that 30% had received their devices as gifts or donations. the fact that 100% of participants owned a wireless device might be attributed to the fact that they all had severe communication disabilities, and that these mainstream devices are often used as aac devices in developing countries due to their affordability (mcnaughton & light 2013) and availability (shane et al. 2012). this is in contrast to recent research in the us, where it was found that individuals who use aac (similar to the participants in the current research) own cell phones and other wireless devices at substantially lower rates than their peers with other disabilities (wireless rerc 2014). in fact, earlier us research reported that this population had limited access to cell phones (bryen, carey & friedman 2007). most of the participants had multiple physical difficulties along with significant speech disabilities that may be expected to place significant barriers to their use of mainstream wireless technologies. the results showed that just over half of the participants (53.3%) made some adaptations to their devices to allow them to successfully access and use their devices. the findings also showed that the participants chose to use cell phones rather than landlines despite the fact that cell phones were difficult to use for individuals with significant physical and communication disabilities. the fact that the participants employed in this research were ’aac and device wise’ as they had been exposed to aac, could have contributed to their wireless technology usage. it has been hypothesized that persons with severe communication disabilities often have limited social networks to begin, which may act as a barrier to cell phone use (bryen & moolman 2015). however, in this research two-thirds of the participants (66.7%) reported that they used their wireless devices to make plans with others, whilst more than half of the participants (56.7%) used their devices for social networking (e.g. facebook, linkedin, twitter). this finding might thus suggest that owning a wireless device could in fact be seen as an enabling factor for social networking, which in turn might reduce the participants’ vulnerability for abuse due to social isolation (brown 2004). it has been documented that limited social interaction and subsequent isolation and dependence on others gradually carves away self-esteem on the basis of the disability, resulting in emotional deprivation, a dependent relationship with the personal assistant, feelings of helplessness and powerlessness as well as ignorance about violence (bornman 2015). apart from this protective function, a recent us study that focussed on social media showed similar results to the findings of the current study when the authors described the benefits for persons who use aac as connecting them with other individuals, making them feel typical, making communication easier, gaining independence and getting help (caron & light 2015). they also found potential employment benefits. unfortunately that was not seen in this south african research. earlier aac studies had revealed that almost two-thirds of young adults with severe communication disabilities felt that, although their aac devices were useful, they were also ‘uncool’ or boring, did not fit their self-image, and did not produce the desired benefit in terms of interaction control (clarke et al. 2001). in contrast, wireless devices have many potential benefits for individuals with severe communication disabilities, including increased awareness and social acceptance (lorah et al. 2013) as well as greater functionality and interconnectivity (mcnaughton & light 2013). this was also evident in the current research when considering the wide range of activities for which wireless devices were used, as well as the frequency with which they were used. limitations of the study a methodological limitation was the relatively small sample size. in addition, participants were not randomly selected, since most were current participants or alumni of fofa, and familiarity with the researchers might have resulted in participants being eager to help and therefore acting in a socially desirable manner by responding positively to items in the survey. familiarity with aac devices might also have rendered them ’device wise’ and hence a different sample might have yielded different results. furthermore, the participants in this research did not reflect the racial/ethnic distribution of south africa. there was an over-representation of white south africans and an under-representation of other ethnic groups in the sample. the under-representation of black participants most likely reflect the inaccessibility and disproportionate access for these south africans to schools (and hence literacy instruction), as well as other social services. additionally, literacy was a requirement for participation in the research, and this might have skewed the results, as low literacy levels exist in south africa amongst people with disabilities (integrated national disability strategy 1997). no prevalence figures exists for south africa, but the most commonly quoted figure is unesco’s figure estimating a global literacy rate of 3% worldwide across the disability spectrum (groce & bakshi 2009). if non-literate individuals had participated, their use of wireless technology might have been substantially different. these demographic factors suggest that the findings of this research cannot be generalized to the broader south african population of people who use aac. conclusions and recommendations this research provides evidence suggesting that wireless technology has the potential to benefit the lives of south africans with severe communication disabilities in a variety of life activities, particularly in as far as social networking, safety and leisure activities, as well as direct communication is concerned. this is a particularly important finding given that wireless technologies are ubiquitous in the general population of south africa (pew research center 2015). furthermore, these mainstream mobile technologies can also serve the functions of specialized aac technologies – this is another important and positive implication of the findings of the study, since these mainstream technologies are comparatively more powerful, compact, and have a longer battery life, which is essential for communicating without worrying to stop and recharge a device, as is often the case with specialized aac devices (alper & haller 2015. additionally, as caron and light (2015) and light and mcnaughton (2014) suggest, social media via networked mobile technologies give individuals with significant communication disabilities opportunities to ‘increase, maintain, or improve’ their own communication in everyday contexts, be they synchronous or asynchronous conversations, face-to-face or from a distance, and among others with or without disabilities. recent research has already demonstrated the benefits of the use of social media by individuals with severe communication disabilities in the united states (caron & light 2015). future research would benefit from a larger and more representative sample to ensure that the findings of this study are not limited to this sample of individuals who have significant communication disabilities and who use aac. additionally, future research should focus on how the interconnectivity between extant specialized aac devices and mainstream wireless devices can be enhanced and, more importantly, how universal design principles can be applied when developing mainstream wireless devices in order to reduce the number of changes/adaptations that were made to allow access to and use of the wireless devices, especially as they relate to the full spectrum of fundamental information and communication activities in the 21st century. in conclusion, our findings provide empirical support for the position of foley and ferri (2012) that technology should be conceived of as a global, accessible and inclusive concept, not one that requires a qualifier based on whether or not the potential user has a disability. acknowledgements the financial assistance of momentum fund towards the fofa project (an empowerment project for individuals who use aac) and the publication of this manuscript are hereby acknowledged. opinions expressed in this manuscript and conclusions arrived at, are those of the authors and not necessarily attributable to momentum. also, we wish to thank the rehabilitation engineering research center for wireless technologies (wireless rerc), funded by the national institute on disability, independent living and rehabilitation research (nidilrr) of the u.s. department of health and human services under grant number 90re5007-01-00, for allowing use of its survey of user needs questionnaire. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions j.b. (university of pretoria) was the south african project leader; d.b. (university of pretoria and temple university) made conceptual contributions; e.m. 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september 2014, from http://www.sars.gov.za/home.asp?pid=4557. wireless rerc, 2014, sunspot – ‘augmentative and alternative communication device users and mainstream wireless devices’, viewed 4 march 2014, from http://www.wirelessrerc.gatech.edu/content/publications/2014-sunspot-number-01-augmentative-and-alternative-communication-device-users. york, c.s. & fabrikant, k.b., 2011, ‘high technology’ in o. wendt, r.w. quist & l.l. lloyd (eds.), assistive technology: principles and applications for communication disorders and special education (chapter 7), pp. 221–264, emerald press, bingley. abstract introduction research methods and design context results discussion conclusion epilogue acknowledgements references footnote about the author(s) anthony g. stacey wits business school, faculty of commerce law and management, university of the witwatersrand, johannesburg, south africa citation stacey, a.g., 2023, ‘effects of institutional policies on employees with nonobvious disabilities’, african journal of disability 12(0), a1103. https://doi.org/10.4102/ajod.v12i0.1103 original research effects of institutional policies on employees with nonobvious disabilities anthony g. stacey received: 22 june 2022; accepted: 22 sept. 2022; published: 17 mar. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: while legislation protects persons with disabilities against discrimination, decisions taken in line with institutional policies may still have a negative impact on the lived experience of those individuals. objectives: the purpose of the study is to evaluate the efficacy of institutional policies, to describe the unintended psychosocial impact of policies and to identify factors that moderate the impact of the policies. method: the study adopted an autoethnographic approach involving recollecting life experiences, reading archival and policy documents, reflecting on experiences, articulating lived experiences, deep thought, reviewing and repetition. activities were carried out as and when appropriate, not necessarily sequentially. the aim was to produce a coherent narrative with credibility, authenticity and integrity. results: the results indicate that decisions based on interpretation of policies did not necessarily result in persons with disabilities being fully included in normal academic activities. a disablist institutional culture substantially moderates the intended consequences of institutional policies on the experiences of persons living with disabilities, particularly those that are nonobvious. conclusions: consideration of persons of all abilities should be no different from recognising the diverse needs of persons of different genders, ages, educational backgrounds, financial means, languages and other demographics. a culture of disability prejudice, even among well-meaning individuals, prevents a progressive policy framework from ensuring inclusivity for persons with disabilities. contribution: the study demonstrates that a supportive institutional culture is necessary to give effect to disability policies and legislation and to optimise the inclusion of persons with disabilities in the workplace. keywords: ableism; disablism; aversive ableism; discrimination; autoethnography; reasonable accommodation; inclusivity. introduction the overarching objective of this article is to explore the relationship between employers’ policies and the lived experiences of employees with disabilities, with specific emphasis on nonobvious disabilities. society at large is alerted to persons’ impairments if their disabilities are evident. persons with disabilities that are not evident to a casual observer generally receive no consideration for their impairments. therefore, they are faced with different challenges in society and their workplaces. this study addresses hermeneutical injustice, when a person’s lived experiences are not well understood by themselves or by others and cannot therefore be adequately articulated (fricker 2007). my intention is to demonstrate and achieve absolute sincerity, because objectivity would be unrealistic under the circumstances. it will become apparent that i live with acquired disabilities, and the study will consider the effect of workplace policies. i acknowledge that, given the opportunity, my employer would surely present an alternative narrative which does not detract from my lived experience. the goals of the study are threefold. the first is to evaluate the efficacy of institutional policies. the stated intention of these policies is to guide management decision-making, remove discriminatory barriers and promote access to full participation in all aspects of the institution and facilitate self-representation by persons with disabilities. a second goal is to describe the unintended psychosocial impact of the implementation of policies. finally, the study seeks to identify factors that moderate the impact of the policies. persons with disabilities are included as one of the ‘designated groups’ in the country’s employment equity act (republic of south africa 1998), for whom affirmative action measures must be implemented. the study will not examine the broader policy framework, which includes the white paper on the rights of persons with disabilities (department of social development 2016) and the convention on the rights of persons with disabilities (united nations general assembly 2006). my explanations and interpretations may be imperfect because i do not have a medical or legal background. nevertheless, they are sincere and based on my experiences and understanding. i refer throughout to persons ‘with disabilities’ (in the plural) because multiple interrelated disabilities are not unusual and are my personal experience. when referring to persons with disabilities i include those living with a single disability. i also use the term in preference to ‘disabled persons’ or any other such term because i self-identify as a person with disabilities. i use the term ‘nonobvious’ rather than the narrower term ‘invisible’ so as to include disabilities that may be evident but generally overlooked or unnoticed. the scope of disability literature includes both ableism and disablism. these terms are not interchangeable. bennett (1989) noted that disability rights activists adopted the term ‘ableism’ to refer to an attitude that unduly values those who are able-bodied. however, wolbring (2008) is critical of a narrow definition of ableism and argues that it is a generic term for a variety of ‘isms’ including racism, sexism, casteism and ageism. gappmayer (2021) summarises ableism succinctly as ‘the social norm of being able’ (p. 102). in the context of this study, ableism exists when normal is synonymous with ability, while disability is considered abnormal, an aberration, anomalous and requiring restoration to normality. individual-level discrimination against those with disabilities is referred to as disablism (bogart & dunn 2019). wolbring (2008) suggests that ableism leads to disablism, being discrimination against those that are less able. disablism is the antithesis of inclusivity and may be more recognisable than ableism. this study is autoethnographic (ellis, adams & bochner 2011) and draws on my experiences of discrimination. hence, there is a greater focus in this article on disablism. research methods and design i am employed in a higher education institution in south africa. the institution is regulated by the higher education act (republic of south africa 1997), while the statute of the institution defines the mechanisms that give expression to the provisions of the act. policies express the institution’s position on a broad range of issues and direct decision-making throughout the institution. adams, ellis and jones (2017) noted that persons who have not experienced cultural and/or institutional oppression cannot articulate the issues in the same ways as those with first-hand experience. they state that autoethnography is the research method that captures what they refer to as ‘insider knowledge’ (p. 3). researchers now generally accept the method as the amalgamation of autobiography (‘auto’), cultural experiences and artefacts (‘ethno’) plus description and interpretation (‘graphy’) – see, for example, ellis et al. (2011). the data for this study comprise my lived experiences plus relevant policy documents of my employer. these documents are freely available to internal stakeholders of the institution but are not necessarily easily accessible externally. the autoethnographic approach is not prescriptive or rigidly defined, and the researcher has to adopt specific activities that are appropriate to the subject matter. figure 1 illustrates the specific activities i undertook in this study. figure 1: diagram of the seven ‘r’s of my approach to this study. the principal elements of the method i adopted in this study are as follows: recollection: the autoethnographic approach involves documenting specific incidents in my life that have particular significance or have proved transformative in some way. these events are sometimes referred to as ‘epiphanies’ because they can result in profound insights or re-evaluation of the author’s lived experience. reading: one can gain richness and insights from reading relevant archival documents and correspondence which comprise important data for the study. the researcher needs to read and familiarise themself with policies and prior research that will be used to analyse the data. reflection: the adage that ‘we do not learn from our experiences; we learn by reflecting on our experiences’ captures the role and importance of reflection. this requires self-awareness and consideration of our experiences within a greater context in order to make better sense of them and learn from them: writing: the medium of documentation and communication is largely through the written word. there is an onus on the autoethnographer to articulate their lived experiences with such richness and vividness that these resonate with their readers. rumination: analysis of the data requires deep, carefully considered thought and feelings. this does not refer to the psychological meaning of continuously thinking sad or dark thoughts that can prolong or intensify depression. rumination differs from reflection in that it includes re-experiencing emotional elements of past events. reviewing: the purpose of the review is to ensure the appropriate continuity of the narrative and cohesion between consecutive sections of the text to validate judgements. complementary constructs or interpretations can be identified that may previously have been overlooked. repetition: the autoethnographic approach is not a linear sequence of activities. i repeated the various activities as often as necessary, often concurrently, opportunistically and pragmatically, rather than in a predictable and cyclical manner. i do not identify any of the characters by name out of respect for their confidentiality. however, i make an exception for the late dr rob hawke, to whom i pay tribute for probably saving my life when i was just 13 years old. context childhood head injury on 29 december 1971, i was attending the 1st kenilworth scouts annual camp (now known as the annual hermanus camp) at de mond, hermanus, western cape, south africa. the daily programme included sailing, canoeing and hiking in the vicinity of the camp, with each camper free to choose which activity to go on under the supervision of one or more adults. that day, i chose to hike up the river gorge in the zilvermijn valley, now within the crystal kloof conservancy, some 10 km from the campsite. dr rob hawke, the camp doctor, had a penchant for leading sailing expeditions on the nearby klein river lagoon. fortuitously, on that day he chose to be one of three adult leaders of the zilvermijn hike with about 10 campers. while hiking up the gorge and approaching the rock pool, which was to be the lunchtime swimming and picnic stop, we had to climb around a rock face adjacent to a waterfall. the leader of the hike climbed ahead to find a suitable route, while the others in the party waited at the foot of the rock face. the leader accidentally dislodged a large rock, and with only a moment’s notice, i looked up and took a direct blow to the forehead. the camp doctor responded immediately to stop the bleeding by applying direct pressure on the wound. he then cleaned the wound in the river and improvised a bandage by tearing up a beach towel, while the rest of the hiking party had lunch. he returned to the main camp site ahead of the hiking party to make preparations for my return. an older camper, who tragically lost his life years later in the attack on the westgate shopping mall in nairobi, carried me down the valley to the main road. once back in camp, the camp doctor treated me in his tent, before i was driven back home to cape town with the referral letter transcribed in figure 2. figure 2: letter from camp doctor (handwritten). an x-ray the following day confirmed the doctor’s assessment of the injury. there was no further cause for concern for my well-being because there was no apparent bleeding inside the skull, and i was not having headaches. i rejoined the camp 4 days after the injury (see figure 3). the camp doctor removed the sutures the following day while on a more leisurely and, for the doctor at least, more characteristic sailing activity. figure 3: (a) a side view of anthony stacey back at camp 4 days post-injury; (b) a front view of anthony stacey back at camp 4 days post-injury. frontal lobe damage in 2008, a colleague began studying psychology at undergraduate level. during the first semester of lecturers, the curriculum included the anatomy of the brain and the functions of the various parts of the brain. reflecting on their lived experience of me, they recognised a correspondence between the primary functions of the frontal lobe and some of my distinctive idiosyncratic behavioural and personality traits. the epiphany was that these traits may be related to my childhood head injury. computed tomography (ct) imaging was only invented very shortly after my head injury, and magnetic resonance imaging (mri) was first performed on humans in 1977. therefore, x-rays had been the only technology available to scan for possible brain trauma. moreover, i had just entered adolescence when the injury occurred, and therefore i was at an early stage of the psychological and social transition between childhood and adulthood. family and friends that observed behavioural or emotional changes over that period would have been attributed to adolescence. in retrospect, the injury could not have taken place at a worse time. a suggestion of damage to my frontal lobe was evident even in my six-monthly high school reports. my schoolmasters reported with monotonous regularity that ‘i had hoped for better results in his languages’ or ‘a definite improvement is required in his language subjects’ and the like. similarly, language comprehension has been extremely challenging, specifically in films and the lyrics in music. on the sports field, cognitive inflexibility (vilkki 1992) was clearly evident in my inability to adapt to rapid changes in the state of play. teachers noted that as a scholar, i had a good sense of what is ‘right and proper’ and that i stood up for my principles. this manifested in adulthood as being unreasonably rigid, inflexible and intolerant. there have been many instances in my life of my lack of sensitivity to situations or awareness of context, which has caused me and others embarrassment, both socially and professionally. i have experienced being emotionally unavailable through two unsuccessful marriages and parenting two children, and i am aware of often having good intentions but not getting things done. situations in which extreme anger would have been an appropriate response only resulted in my being frustrated or indignant, due to an inability to experience anger. some might label my preoccupation with recording and tracking my household water consumption, my household electricity consumption, my vehicles’ fuel consumption, my weight, my daily heartbeat, my exercise programme, etc. as obsessive. there is a well-established relationship between childhood traumatic brain injury and depression (see, for example, albicini & mckinlay 2018; anderson et al. 2011; beauchamp et al. 2011; mauri et al. 2014). this is consistent with my having experienced depression for all of my adult life, differing over time only in its severity. botched surgery late in december 2008, i developed pain and inflammation in my upper right leg which a vascular surgeon diagnosed as thrombophlebitis. their recommendation was that i undergo surgery to remove varicose veins, which then took place on 30 december. within hours of surgery, the surgeon visited me in the ward; they told me that there had been ‘complications’ and that the surgical assistant had accidentally removed a section of my popliteal nerve. they explained that this would result in a ‘drop foot’ and that it would be a ‘significant’ permanent disability. it is worth noting that notwithstanding the seriousness of my childhood head injury, i had never considered the notion that i was living with a disability. however, i was now living with an unequivocal physical disability. i notified the institution’s human resources division, who duly recorded me as ‘partially disabled’ on the human resources information system. in the days and months that followed, i visited a variety of medical practitioners to identify what they could do to mitigate the disability. these included a neurosurgeon, orthopaedic surgeon, orthotist, biokineticist and podiatrist. the dysaesthetic pain was such that even the lightest touch – for example, the weight of a cotton bed sheet – was excruciating. the prescribed pain medication provided minimal relief and came with the loss of libido and depression as side effects. the loss of mobility interfered with intimacy and resulted in rapid weight gain and muscle atrophy. i struggled with everyday tasks such as getting dressed, bathing, walking barefoot, running, wearing sandals and even opening a pedal dustbin. by wearing an ankle–foot orthosis, i was able to learn to walk relatively normally. however, an asymmetric gait resulted in a sequestrated lumbar disc and an urgent laminectomy with some 3 months of recuperation. the long-term impact has been chronic lower back pain, intensified by remaining relatively inactive for extended periods, such as in ‘cocktail party’ settings, queuing, travelling and sleeping. in public, i had to become used to strangers staring at me when wearing shorts. despite displaying the appropriate token, i regularly received verbal abuse and even physical threats for parking in bays reserved for persons with disabilities. i felt neither anger nor malice towards the vascular surgeon, despite the profound impact i was experiencing on my day-to-day life. nevertheless, i chose to seek compensation for medical expenses and loss of earnings. the medicolegal process involved consultations with a forensic actuary and examinations by a multiplicity of medical specialists. these included an orthopaedic surgeon, physiotherapist, clinical psychologist, biokineticist, occupational therapist, orthotist, neurosurgeons, vascular surgeon, neurologist and an industrial psychologist. after a gruelling and protracted process, the matter was finalised 4 years and 4 months after the injury. performance of essential job functions social norms in the institution dictate that overt discrimination against persons with disabilities is unacceptable. prejudice is nevertheless present even among those who mean well, described by friedman (2018) as aversive ableism. my experience of parking bays on campus for persons with disabilities offers an obvious example. they are inadequate in number and many are in inappropriate locations. they are frequently used by persons without disabilities without sanction. persons with nonobvious disabilities experience harassment and abuse for legitimate use, illustrating that prejudice is potentially greater against those with nonobvious disabilities. in terms of the institution’s policies (university of the witwatersrand 2016a, 2016b), an impairment must substantially limit one’s ability to perform the essential functions of one’s job in order to be deemed a person with disabilities. i have experienced the cruel irony that the more effective the rehabilitation, the less likely the institution is to accept one as a person with a disability. notwithstanding the efficacy of rehabilitation, living with a disability reduces the amount of mental and physical energy available to perform in the workplace. this phenomenon has resulted in the popularisation of the neologism of spoon theory (miserandino 2003) among persons with disabilities or chronic illnesses. it became evident within weeks post-injury that i needed elevation and movement of my leg to tolerate air travel of more than 2 h. travelling for more than 2 h in economy class resulted in the onset of severe nerve pain. foreign travel for academic and research purposes, including conference attendance, is essential for an academic’s career advancement. hence, unless i was appropriately accommodated, foreign travel would be a limitation on my ability to perform this essential function of my job. ethical considerations ethical clearance was granted by the university of the witwatersrand human research ethics committee (non-medical) h20/06/46. results personal injustices in 2012, the relevant committee granted me 6 months sabbatical leave. i had two conference papers accepted for presentation at a european conference in june. i applied to the institution for funding to fly to the conference in business class to accommodate my need to elevate and have space to move my leg freely. after providing the necessary documentation and motivation, the powers that be agreed that the faculty research committee budget would cover the costs of my travel. the vice chancellor of the institution then approved my application. in 2013, i again had a conference paper accepted for presentation at a european conference. for the same reasons, i applied to the institution for similar funding. the relevant decision-maker initially approved my application but then retracted the decision on the grounds that i had cost the faculty too much money the previous year. after extensive negotiations, approval for my travel was granted on the understanding that costs would be paid out of the school budget. i was subsequently advised that in the future, the additional cost of accommodation would be covered by the ‘reasonable accommodation’ clause in the institution’s disability policy. i had no appetite for repeating the process for the following two years. i was exhausted and humiliated by the application and approval process, and i chose to spend four weeks in rehabilitation from depression and anxiety in 2014. in 2016, i applied for reasonable accommodation for foreign travel in terms of the institution’s policy, as i had been advised previously. the institution’s disability rights unit convened a reasonable accommodation panel meeting, and the panel decided that, contrary to the previous directive, my application should rather be reviewed in line with the travel policy. this left the decision up to the faculty dean, who could approve business-class travel on the grounds of ‘a medical condition’ rather than disability. for the following two years, my foreign travel was approved in terms of the institution’s travel policy and paid from the school’s travel budget. a new director of the school effectively deferred approval of travel to a european conference in 2018 to the faculty dean. their position was that my own research funds had to cover the difference between economy and business class. i argued that would place an unfair additional burden on me to raise research funds, because the accommodation need was solely on account of my disability. the matter escalated first internally within the institution and then to the statutory dispute resolution body. the dispute remains unresolved to date but became somewhat moot as the coronavirus disease 2019 pandemic caused academia to adopt hybrid mode activities. in 2019, two senior-level vacancies arose in the school. i considered myself a suitable candidate for either position. i therefore submitted applications through the appropriate channels and was shortlisted for both. during the first selection interview, the chairperson put to me that a referee had identified ‘administration’ as a weakness in my overall performance. i was completely blindsided by this revelation. nobody had ever pointed this out to me in any performance review during some 18 years of employment with the institution. weak administrative skills would be consistent with executive dysfunction. realistically, the selection committee would not have taken into account my childhood head injury and symptoms of frontal lobe damage. the selection committee considered me to be ‘not appointable’ to the position. having made the connection between administrative skills and executive dysfunction, i reflected on the documented symptoms of frontal lobe damage. i wanted to understand the extent to which my lived experiences through adult life may be consistent with frontal lobe syndrome. i was able to positively identify many symptoms based on the definition by krch (2011). i had previously been unaware of unintentionally creating false memories, disorganisation, inability to modify behaviour to accommodate new information, loss of spontaneity and risky behaviours. in social settings, i was unaware of diminished empathy, a limited range of emotions, aggression, irritability, social inappropriateness, tactlessness and poor self-awareness. these behaviours have evoked criticism, disapproval, anger, alienation and other forms of negative social feedback. institutional policies related to disability in this section, i cite examples from institutional policies that were applicable at the time, particularly those which are apparently well-meaning and beneficial but which constitute subtle or embedded discrimination against persons with disabilities. the policies of the institution are administered within a policy framework and are subordinate to the higher education act (republic of south africa 1997) and the statute of the institution. in terms of the policy framework, the registrar of the institution has been the executive responsible for disability rights. an objective of the disability policy has been to ensure disability integration into all human resource policies and procedures. it is therefore curious that the executive responsible for human resources and transformation has not been accountable for disability rights. the policy framework also defines the role of the institutional forum, which is one of several structures to govern public universities for which the higher education act provides: institutional (university) forum advises council on implementation of the act, race and gender policies, selection of senior management, codes of conduct, and fostering an appropriate institutional culture. (university of the witwatersrand 2019:3) admittedly, the demographics of the institution suggest that there are fewer employees directly affected by disability policies than those who may be affected by raceand gender-related issues.1 however, it is problematic that the scope of such an important governance structure excludes disability policies. similarly, various policies prescribe the composition of committees involved with the selection, appointment and promotion of employees. generally, these policies refer to the representation only by race and gender, or they are silent on diversity and inclusivity requirements. one exception is the policy that states the following: the selection committee must generally be representative in terms of race (35% black people), gender (50% female), persons with disabilities (where possible) and functional expertise. (university of the witwatersrand 2016b:12) that the committee should only be representative in terms of persons with disabilities ‘where possible’ implies that it may not be possible for a representative to represent persons with disabilities appropriately. this is a poor reflection on an institution with such a large number of employees. one of the explicitly stated principles of recruitment and selection is that: appointable candidates, who fulfil the definition of persons with disabilities in terms of the employment equity act, shall be given preference regardless of whether they are internal or external. (university of the witwatersrand 2016b:6) on first impression, the effect of this clause is to implement an affirmative action measure designed to benefit candidates with disabilities. in practice, however, selection committees may not consider a candidate with disabilities to be ‘appointable’ because of the effect of their impairment, particularly in the case of nonobvious disabilities. in such cases, the above clause would not be deemed applicable. in other words, selection committees would need to assess candidates with disabilities to be ‘appointable’ despite their disabilities in order for those candidates to benefit from affirmative action measures. this places such individuals at an unfair disadvantage with respect to other candidates. the ‘reasonable accommodation’ provisions of the disability policy begins by stating that the institution: […r]espects, and will implement the right of job applicants and employees with disabilities to receive reasonable accommodation, when the person voluntarily discloses a disability-related accommodation need. (university of the witwatersrand 2016a:4) again, the obvious interpretation of this commitment is that all job applicants and employees with disabilities have a right to receive reasonable accommodation. however, the caveat is in the second clause, the implications of which are significant. firstly, the person with disabilities may not necessarily be aware that their impairment is limiting their prospects. they will then be unaware of their eligibility to be considered for reasonable accommodation. then, the institution accepts no responsibility for providing it, particularly in the case of nonobvious disabilities. this is especially unfair if the institution is aware of both the impairment and deficient performance but has failed to associate the two. secondly, the person with disabilities may not necessarily be cognisant of reasonable accommodation measures that could potentially mitigate the effect of their impairment. again, the institution accepts no responsibility for assisting the employee to identify such measures. an alternative framing of the above commitment is that ‘the institution will not consider reasonable accommodation unless the person discloses a need related to their disability’. the upshot is that unless the employee themself articulates the associated need, disclosure of the disability itself initiates no affirmative action measures by the institution. the employee may thus be prejudiced as a direct consequence of their impairment. disablist implementation of policies in this section, i give examples of institutional policies that are well meaning, but which fail to achieve their intended beneficial outcomes because of a disablist institutional culture and environment. reverting to the recruitment, selection and appointment policy, and specifically the composition of the selection committee, the policy states that: the chair may co-opt additional members from within, or where this is not possible, external to the university to achieve race, gender and disability representivity. (university of the witwatersrand 2016b:12) this appears eminently reasonable to ensure diversity and inclusivity on the selection committee. the policy gives the chairperson the option of whether or not to achieve fair representation but creates no obligation on them to do so. the nature and diversity of disabilities are such that it is impossible for anyone to fully empathise with and appreciate the lived experience of those with disabilities. it is curious that the chairperson of a selection committee has the option not to include a person with disabilities, particularly if any one of the applicants lives with disabilities. even if it were unintentional, constituents would consider the exclusion women or black people from the committee to be sexist or racist and unconscionable. similarly, the exclusion or omission of persons with disabilities appears disablist and offensive. the disability policy of the institution has included many ‘motherhood and apple pie’ statements – statements that encapsulate universally held values that no reasonable person would contest. by way of an example, the following is from the statement of commitment in the policy: the [institution] recognises that persons with disabilities have been historically marginalised in south africa and that it is imperative that higher education, and [the institution] specifically, puts measures in place to redress the inequalities and disadvantages created by prejudice and discrimination, and contributes to a democratic vision which is respectful of all human rights. (university of the witwatersrand 2016a:1) who could argue with that? however, in the words of a colleague who was a member of the selection committees, selection processes are ‘brutal’. furthermore, figure 4 illustrates that there is circularity in the following clauses of the policy: ‘affirmative action measures’ are measures designed to ensure that suitably qualified persons from designated groups (i.e. persons with disabilities) have equal employment opportunities and are equitably represented in all occupational categories and levels in the [institution’s] workforce. employees and job applicants with disabilities will benefit from the affirmative action initiatives embarked upon by [the institution] and can apply for reasonable accommodation in accordance with the provisions of this policy. (university of the witwatersrand 2016a:1) figure 4: circularity of affirmative action and reasonable accommodation. and: reasonable accommodation is any change or modification made to an employment standard, policy, practice, job or the working environment which enables a person with a disability to enjoy equal opportunities with others and to have access to or to participate or advance in employment. (university of the witwatersrand 2016a:15) ideally, this becomes a virtuous cycle from which persons with disabilities plus the institution itself benefit, but it requires adherence to both the letter and the spirit of the policy. disablism disrupts the virtuous cycle, as the following examples illustrate. the organisation’s disability policy has prescribed the composition and responsibilities of the disability and reasonable accommodation panel. it is significant that the policy has made no provision for discretion with regard to the inclusion of particular managers and an occupational health doctor. specialists may be co-opted onto the panel should it be deemed necessary. the person disclosing their disabilities and applying for reasonable accommodation does not appear in front of the panel. this is problematic as it affords the individual no opportunity to verify that the panel is properly constituted. even resorting to the promotion of access to information act (republic of south africa 2000) to access the minutes of the panel was unsuccessful, as the act stipulates that: the information officer may refuse a request for access to a record if the record contains … minutes of a meeting for the purpose of assisting to … take a decision in the exercise of a power or performance of a duty conferred or imposed by law … (s42 a) it was impossible for me to substantiate that the panel that met in march 2016 to consider my application for reasonable accommodation excluded an appropriately qualified medical practitioner. the institution’s disability rights unit may not have convened the panel in accordance with the institution’s disability policy. persons without disabilities act as gatekeepers to reasonable accommodation for those with disabilities. the precondition attached to reasonable accommodation is that it does not involve ‘unjustifiable hardship’. that is to say, an accommodation may not be unduly costly, expensive, substantial or disruptive, nor may it fundamentally alter the nature of the institution’s operations. an employer would have to take into account its financial circumstances and the estimated amount of expenditure required to accommodate when invoking the ‘unjustifiable expense’ defence. it is understandable that a small organisation may claim unjustifiable hardship for even a modest accommodation need. however, that defence from an organisation with an expenditure of more than r 4.5 billion (approximately usd 260 million) is implausible. the institution’s disability policy has stated that: a central budget through the ‘reasonable accommodation fund’ administered by the disability rights unit will be made available to meet the accommodation requirements of the [institution]. (university of the witwatersrand 2016a:4) and: all faculties and divisions will be required to progressively integrate reasonable accommodation in their budgeting processes. (university of the witwatersrand 2016a:4) unbudgeted expenditure is anathema to the institution. the institution can therefore invoke the ‘unjustifiable hardship’ defence in any reasonable accommodation case in two ways: firstly, by overlooking the policy that provides for a central budget; secondly, by accepting faculties’ and divisions’ noncompliance with the requirement to integrate reasonable accommodation into their budgeting processes. the institution’s disability policy explicitly acknowledged that confidentiality is an important ‘guiding principle’ which should be respected at all times. however, confidentiality remains only a principle because it is wholly impracticable. by way of example: line managers, human resources and the transformation office are all represented on the reasonable accommodation panel. line managers have to be apprised of person’s disability status if they are to budget for reasonable accommodation. finance personnel have to administer any expenditure on reasonable accommodation. selection and promotion committees, including applicants’ peers, have to be apprised of an applicant’s disability status to take this into account in their decision-making. employee relations and senior executives are involved in the event of disputes arising from interpretation of the policy. the plethora of colleagues who have knowledge of my disabilities has made a mockery of the confidentiality principle. self-representation by persons with disabilities is widely considered to be an essential element of disability rights (waldschmidt et al. 2015), as captured in the slogan ‘nothing about us without us’. indeed, the disability policy incorporated the principle of self-representation in the clause stating that: the process of identifying and implementing reasonable accommodation should involve consultation with different role players including the person seeking the accommodation in an effort to reach a mutually acceptable solution. (university of the witwatersrand 2016a:17) it is therefore inexcusable for a reasonable accommodation panel to take and implement decisions without consulting the person with disabilities, as happened with each of my reasonable accommodation applications. similarly, it is improper and insensitive to appoint a person without disabilities to represent those with disability in any governance structure of the institution. the inappropriateness, obsolescence and negativity associated with the widely discredited medicalisation of disability are widely acknowledged (e.g. department of social development 2016; hayes & hannold 2007; hogan 2019; shakespeare 2006). yet in response to my request for travel-related reasonable accommodation, the outcome of the panel meeting was that: [… a]ll applications for travel related reasonable accommodation should be reviewed in line with [the institution’s] travel policy and that a member of [the executive] can make such a decision in line with [the institution’s] travel policy. (university of the witwatersrand [higher education institution] disability reasonable accommodation panel, pers. commun., 22 august 2019) the relevant paragraph of the institution’s travel policy read as follows: the vice chancellor and / or [senior executive] may or may not approve premium economy or business class for other staff members under the following circumstances: … extenuating circumstances exist, such as a severe medical condition (supported by a medical certificate). (university of the witwatersrand 2020:5) policies have been silent on what constitutes a ‘severe medical condition’ as opposed to a disability. in my application, the decision of whether or not to provide reasonable accommodation was deferred to an executive who is unlikely to have any expert knowledge of my particular disability. the subjective judgement of severity and disability is the prerogative of an able-bodied executive. expenditure related to providing accommodation in the absence of a central budget would have to come out of the senior executive’s faculty funds and would be unbudgeted. this would be a significant disincentive for them to approve the requested reasonable accommodation. this is little different from the cuts in social benefits being experienced by those with anything but the most severe impairments (oliver 2013) and, by extension, those with nonobvious disabilities. discussion psychosocial consequences i have discerned three distinct elements of my responses to my experiences. firstly, i express judgements about those individuals involved with the implementation of disability policies in the institution. secondly, i formulate judgements of their actions and behaviour, and finally, i articulate experiences that are an integral part of my life with disabilities. my judgements of the executives and managers tasked with implementing disability policies are that they are not malicious or spiteful individuals. i think that they perceive the priorities and demands on the institution to be more pressing. they appear to lack empathy, compassion and a willingness to develop an awareness of the lived experiences of those with disabilities. as a collective, they demonstrate aversive disablism (deal 2007), as hurtful as aversive racism (dovidio, gaertner & pearson 2017) and aversive sexism (tracy & rivera 2010). perhaps it is not surprising that feelings tend to be intellectualised in an institution led by academics and researchers – a tendency referred to as post-emotionalism (rodger 2003). the actions and behaviours of those individuals had a profound impact on me. my judgement is that the consequences were unintended but predictable due to the disablist institutional culture. the lack of adequate policy and pragmatic measures to protect my confidentiality mentioned earlier was deeply disrespectful. the reframing of my physical impairment as merely a medical condition that does not qualify for reasonable accommodation is a form of manipulation. it gives an unqualified person the power and authority to act as a gatekeeper. i am gaslighted (abramson 2014) by the implication that my experience of living with a specific disability is mistaken and imaginary. each and every microaggression has wounded, humiliated and retraumatised me. the policies of the institution give substance to the psychological contract (rousseau 1989) between employer and employee. affirmative action entitles members of designated groups to preferential treatment over others, and employees with disabilities therefore have a reasonable and greater sense of entitlement. priesemuth and taylor (2016) found a positive relationship between the strength of entitlement and the severity of depressive moods when expectations are unmet or promises broken. it follows, therefore, that employees with disabilities are at greater risk when the psychological contract is broken through the implementation of a policy that is perceived to be unfair. expenditure by the institution on reasonable accommodation has been prioritised on the basis of strict managerialist criteria such as ‘… inter alia, costs, budgetary resources, opportunity costs, [and] relevance’. the moral imperative to create equal opportunities for employees with disabilities is absent. executives and managers have misconstrued their managerial discretion by prioritising expenditure ahead of reasonable accommodation. they have been remiss in not adhering to the policy to make available a central budget administered by the disability rights unit. in doing so, they have sanitised and protected the community from the discomfort of engaging with disability. discrimination against persons with disabilities has been perpetuated, and the culture of disablism pervading the institution has been reinforced. the dominant response that i have experienced as a result of analysing the events, policies and responses through the course of this study has been a sense of loss. until a few years ago, i had a somewhat postapocalyptic view of the world and society. my experience of living was that it was inescapably hostile, unsafe, confusing, competitive, dangerous, irrational, brutal, random, deceitful, dark and toxic. the sense of loss comes from the recent realisation that i have viewed life through an imperfect lens for so long. sadly, this has had a detrimental influence on my life and on those closest to me. i acknowledge that i allowed myself to become excessively invested in the institution which has left me exposed, vulnerable and disillusioned. i think that i have been singled out because of activism and leadership within organised labour. i trusted in the morality, integrity and decency of the institution as manifest in its policies and procedures, but instead of being affirmed and accommodated, my trust has been betrayed. i am frustrated that disablism prevails, and as a david i am powerless against the goliath of the institution. conclusion the study has drawn attention to some challenging findings. the management of the institution may want to consider why, with such a large number of employees, it acknowledges that it may not be possible for persons with disabilities to be appropriately represented on selection committees. similarly, it should consider why candidates with disabilities should be disadvantaged by having to demonstrate themselves appointable despite their disabilities. then, there is surely an obligation on managers who are aware of substandard performance by an employee with disabilities to advise the individual of their right to apply for accommodations. the purpose of this study is not to attract sympathy, pity or validation. i also have no desire to carry out an ad institutum attack or ‘culture assassination’ of the institution. my intention is rather to draw attention to challenges that are experienced by both employers and their employees with disabilities. greater awareness can lead to mutually beneficial improvements in institutional policies and the relationships between employers and their employees with disabilities. it appears as if the implementation of disability policies is guided by managerialism (shepherd 2018) and that the letter of the policies takes precedence over the spirit and intent. experience is that policy implementation is not necessarily successful in promoting access to full participation in all aspects of the institution, because not all discriminatory barriers are effectively removed. persons with disabilities do not achieve self-representation because policies are silent on the matter or because such provisions that are in policies go unheeded. the institution is relinquishing the benefits of a diverse workforce that values the unique insights, experiences and knowledge of persons with disabilities. i have described the unintended impact of the manner in which management has implemented policies as generally detrimental to the emotional well-being of employees with disabilities. this is a result of the perception that management has broken the implicit promise embedded in the institution’s policies. violations of the psychological contract have been found to be positively correlated with employee turnover and negatively with trust, satisfaction and intentions to remain (robinson & rousseau 1994). all these consequences are likely to be detrimental to the institution. maybe more pragmatic (less progressive) policies are preferable to mitigate against unfulfilled expectations of affirmative action and accommodation. aversive disablism neutralises the intended and potential benefits of institutional policies on the lived experience, well-being and quality of life of employees with disabilities. figure 5 illustrates a model of the moderating effect of an aversive disablist institutional culture on the relationship between policies and the lived experience of employees with disability. this alludes to the opportunity and need for future research into this phenomenon. figure 5: model of the moderating effect of disablism on the relationship between policies and lived experience. in closing, the ‘black dog’ of depression (howard 1992) is my lifelong companion. however, i am no longer afraid of its ferocity because we have found a way of living together in harmony. epilogue the institution has recently amended its policy affecting the inclusion of persons with disabilities in the workplace. the revised policy still regards disability as anomalous and requiring treatment rather than being a normal phenomenon within a community. this is evidence that ableism is self-perpetuating. while disablism may only be evident in the operationalisation of policies, ableism would appear to be embedded in policy frameworks. this has important implications for institutions and warrants further research. acknowledgements the author acknowledges the support of family, friends, colleagues and practitioners too numerous to mention, who provided support and insight into these lived experiences. competing interests the author declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contributions the author was the sole contributor to the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are 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http://www.ajod.org open access table of contents i original research views from the borderline: extracts from my life as a coloured child of deaf adults, growing up in apartheid south africa jane harrison, brian watermeyer african journal of disability | vol 8 | a473 | 24 april 2019 original research lived experiences of caregivers of children with autism spectrum disorder in kenya lizahn g. cloete, evans o. obaigwa african journal of disability | vol 8 | a435 | 25 april 2019 original research success in africa: people with disabilities share their stories tom shakespeare, anthony mugeere, emily nyariki, joseph simbaya african journal of disability | vol 8 | a522 | 25 april 2019 original research ‘we only got coca-cola’: disability and the paradox of (dis)empowerment in southeast nigeria okechukwu v. nwokorie, patrick j. devlieger african journal of disability | vol 8 | a444 | 25 april 2019 original research disabled people’s organisations and the disability movement: perspectives from burkina faso lara bezzina african journal of disability | vol 8 | a500 | 29 april 2019 original research access into professional degrees by students with disabilities in south african higher learning: a decolonial perspective sibonokuhle ndlovu african journal of disability | vol 8 | a514 | 10 june 2019 original research participation restrictions and vocational rehabilitation needs experienced by persons with a unilateral lower limb amputation in the western cape, south africa tak wing yu, liezel ennion african journal of disability | vol 8 | a456 | 10 june 2019 original research associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury mokgadi k. mashola, diphale j. mothabeng african journal of disability | vol 8 | a463 | 11 june 2019 original research the experiences of children with intellectual and developmental disabilities in inclusive schools in accra, ghana christiana okyere, heather m. aldersey, rosemary lysaght african journal of disability | vol 8 | a542 | 24 july 2019 101 110 119 126 139 149 161 168 177 page i of iii table of contents i original research funding and inclusion in higher education institutions for students with disabilities desire chiwandire, louise vincent african journal of disability | vol 8 | a336 | 29 january 2019 original research current access and recruitment practices in nursing education institutions in kwazulu-natal: a case study of student nurses with disabilities selvarani moodley, gugu mchunu african journal of disability | vol 8 | a429 | 20 february 2019 original research pastoral ministry and persons with disabilities: the case of the apostolic faith mission in zimbabwe nomatter sande african journal of disability | vol 8 | a431 | 20 february 2019 original research improvements in health-related quality of life and function in middle-aged women with chronic diseases of lifestyle after participating in a non-pharmacological intervention programme: a pragmatic randomised controlled trial roline y. barnes, jennifer jelsma, romy parker african journal of disability | vol 8 | a428 | 25 february 2019 original research the effect of a serious game on empathy and prejudice of psychology students towards persons with disabilities linda olivier, paula sterkenburg, esmé van rensburg african journal of disability | vol 8 | a328 | 28 march 2019 original research development of the wheelchair interface questionnaire and initial face and content validity karen rispin, abigail b. davis, vicki l. sheafer, joy wee african journal of disability | vol 8 | a520 | 28 march 2019 original research family-based activity settings of children in a low-income african context sadna balton, kitty uys, erna alant african journal of disability | vol 8 | a364 | 23 april 2019 original research multilingualism and augmentative and alternative communication in south africa – exploring the views of persons with complex communication needs kerstin m. tönsing, karin van niekerk, georg schlünz, ilana wilken african journal of disability | vol 8 | a507 | 24 april 2019 original research community-based rehabilitation workers’ perspectives of wheelchair provision in uganda: a qualitative study nikola seymour, martha geiger, elsje scheffler african journal of disability | vol 8 | a432 | 24 april 2019 1 13 22 30 44 54 62 76 89 vol 8 (2019) issn: 2223-9170 (print) | issn: 2226-7220 (online)african journal of disability http://www.ajod.org open access table of contents ii original research a snapshot of the chalkboard writing experiences of bachelor of education students with visual disabilities in south africa roshanthni subrayen, rubby dhunpath african journal of disability | vol 8 | a523 | 24 july 2019 original research investigation of physical and functional impairments experienced by people with active tuberculosis infection: a feasibility pilot study heleen van aswegen, ronel roos, melanie mccree, samantha quinn, mervyn mer african journal of disability | vol 8 | a515 | 13 august 2019 original research disability prevalence-context matters: a descriptive community-based survey soraya maart, seyi amosun, jennifer jelsma african journal of disability | vol 8 | a512 | 14 august 2019 original research a conceptual framework for designing ambient assisted living services for individuals with disabilities in uganda and south africa michael kyazze, janet wesson, kevin naudé african journal of disability | vol 8 | a477 | 26 august 2019 original research the experiences of parents of children living with disabilities at lehlaba protective workshop in sekhukhune district of limpopo province brian tigere, jabulani c. makhubele african journal of disability | vol 8 | a528 | 19 september 2019 original research factors that relate to sport participation of adolescents with a mobility impairment aletta m. moll, garfield bester african journal of disability | vol 8 | a614 | 23 september 2019 original research access to primary care for persons with spinal cord injuries in the greater gaborone area, botswana thato m.m. paulus-mokgachane, surona j. visagie, gubela mji african journal of disability | vol 8 | a539 | 23 september 2019 original research south african stakeholders’ knowledge of community-based rehabilitation sarah rule, anton roberts, pamela mclaren, susan philpott african journal of disability | vol 8 | a484 | 25 september 2019 original research experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in ghana joana d.a. kyeremateng, anthony edusei, joslin a. dogbe, maxwell p. opoku, william nketsia, charles hammond, sally a. afriyie african journal of disability | vol 8 | a577 | 25 september 2019 original research framing heuristics in inclusive education: the case of uganda’s preservice teacher education programme proscovia s. nantongo african journal of disability | vol 8 | a611 | 21 october 2019 188 196 208 216 225 234 242 251 263 274 original research including parents in inclusive practice: supporting students with disabilities in higher education princess t. duma, lester b. shawa african journal of disability | vol 8 | a592 | 21 october 2019 original research a university’s response to people with disabilities in worcester, western cape jana v. müller, lieketseng ned, hananja boshoff african journal of disability | vol 8 | a439 | 24 october 2019 original research the role of rehabilitation care workers in south african healthcare: a q-methodological study shamila gamiet, michael rowe african journal of disability | vol 8 | a537 | 29 october 2019 original research how pain management for children with cerebral palsy in south african schools complies with up-to-date knowledge ensa johnson, stefan nilsson, margareta adolfsson african journal of disability | vol 8 | a575 | 22 november 2019 original research even we are important: sexuality and the degenderisation of people with disabilities in the linguistic landscapes of two south african universities in the western cape province temitope o. adekunle, gift mheta, maleshoane rapeane-mathonsi african journal of disability | vol 8 | a568 | 22 november 2019 review article a defence of identity for persons with disability: reflections from religion and philosophy versus ancient african culture patrick ojok, junior b. musenze african journal of disability | vol 8 | a490 | 23 april 2019 review article the health benefits of exercise therapy for patients with down syndrome: a systematic review yvonne paul, terry j. ellapen, marco barnard, henriëtte v. hammill, mariëtte swanepoel african journal of disability | vol 8 | a576 | 23 october 2019 opinion paper inclusion, universal design and universal design for learning in higher education: south africa and the united states elizabeth m. dalton, marcia lyner-cleophas, britt t. ferguson, judith mckenzie african journal of disability | vol 8 | a519 | 29 july 2019 case study integrated home-based screening for people living with disabilities: a case study from rural malawi elizabeth m. petersen, emily b. wroe, kondwani nyangulu, chisomo kanyenda, sam njolomole, elizabeth l. dunbar, chiyembekezo z. kachimanga african journal of disability | vol 8 | a582 | 22 november 2019 284 294 305 312 325 337 343 352 359 page ii of iii http://www.ajod.org open access table of contents iii page iii of iii editorial an introduction to a special issue on the role of assistive technology in social inclusion of persons with disabilities in africa: outcome of the fifth african network for evidence-to-action in disability conference gubela mji, anthony edusei african journal of disability | vol 8 | a681 | 12 november 2019 original research assistive technology enables inclusion in higher education: the role of higher and further education disability services association marcia lyner-cleophas african journal of disability | vol 8 | a558 | 22 august 2019 original research perspectives on a mobile application that maps assistive technology resources in africa surona visagie, rebecca matter, george kayange, mussa chiwaula, mark harniss, callista kahonde african journal of disability | vol 8 | a567 | 22 august 2019 correction corrigendum: the intersection of disability and food security: perspectives of health and humanitarian aid workers candice a. quarmby, mershen pillay african journal of disability | vol 8 | a551 | 10 october 2019 369 373 379 388 correction erratum: the intersection of disability and food security: perspectives of health and humanitarian aid workers candice a. quarmby, mershen pillay african journal of disability | vol 8 | a550 | 10 october 2019 correction erratum: rethinking disability: the need to rethink representation jenna-lee procter african journal of disability | vol 8 | a605 | 10 october 2019 correction corrigendum: the impact of stroke on people living in central uganda: a descriptive study julius t. kamwesiga, lena k. von koch, gunilla m. eriksson, susanne g.e. guidetti african journal of disability | vol 8 | a606 | 10 october 2019 reviewer acknowledgement african journal of disability | vol 8 | a682 | 11 december 2019 389 391 392 393 vol 8 (2019) special collection: disability and inclusion in africa the role of assistive technology, sub-edited by callista kahonde and gubela mji book review disability, health and human development – book review zuzana matousova-done african journal of disability | vol 8 | a538 | 26 august 2019 364 book review review of the book: handicap et technologie en contextes africains [disability and technology in african contexts] by patrick devlieger, jori de coster, lambert nieme and léon mbadu-khonde muriel mac-seing african journal of disability | vol 8 | a635 | 09 september 2019 366 introduction contextualising this paper the challenges i experienced before i was introduced to a support group a sense of belonging in the social support group: my life changed forever conclusion acknowledgements references about the author(s) marubini c. sadiki department of inclusive education, college of education, university of south africa, pretoria, south africa citation sadiki, m.c., 2023, ‘parenting a child with disability: a mother’s reflection on the significance of social support’, african journal of disability 12(0), a1157. https://doi.org/10.4102/ajod.v12i0.1157 community paper parenting a child with disability: a mother’s reflection on the significance of social support marubini c. sadiki received: 11 oct. 2022; accepted: 12 mar. 2023; published: 19 may 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction this paper is a reflection on my experiences. here, i reflect on the significance of social support groups as a mother of a child with disabilities. i share my experiences of how i was empowered by the social support of mothers of children with disabilities, with the intention that these experiences will assist other mothers in a rural context. i relate my personal positive experiences of how collaborating with other mothers in the support groups enabled me to be a better parent to my child. this paper presents the significance of coming together as mothers of children with disabilities in a rural setting. i reflect on the implications of raising a child with a disability without social support, and how i overcame those challenges after joining the social support group for mothers of children with disabilities. contextualising this paper social support has been identified as an important factor that contributes positively to the caregivers’ (parent, mother) well-being (lei & kantor 2021). tigere and makhubele (2019) assert that parents of children with disabilities in sekhukhune district found that support groups reduced anxiety. in tanzania, mcnally and mannan (2013) observed that the support groups for mothers of children with disabilities were established to help them share their feelings in an open and supportive environment. dodge et al. (2022) reveal that social support is one of the coping mechanisms used by mothers to cope with raising a child with down syndrome. the support groups for mothers of children with disabilities are aimed at aiding mothers during acute periods of stress and change such as: following a birth, initial diagnosis or in response to a major medical intervention (cauda-laufer 2017). the inspiring statements of support groups encourage parents to contribute their experiences and views (cabiati 2021). the support group is a platform to share, guide and learn from other mothers’ experiences of acceptance, enabling mothers of children with disabilities manage their feelings of isolation and loneliness (cauda-laufer 2017). the shared experiences of other parents helped mothers think positively about the destiny of their child (cauda-laufer 2017). the social interaction and social structures in these groups provide emotional support to mothers of children with disabilities (dehghan et al. 2022). parenting a child with disabilities adversely impacts ones well-being in various ways. these parents may experience: (1) societal stereotypes, (2) prejudices, (3) stigma and (4) psychological health struggles, (5) economic difficulties, and (6) a lack of social and family support. research conducted in tanzania reported that caregivers’ experiences of a lack of support contributed to isolation (mcnally & mannan 2013). parenting a child with a disability may be painful and difficult journey without support – something it could be devastating and challenging to some parents (cauda-laufer 2017). the challenges i experienced before i was introduced to a support group raising a child with disabilities came with significant impact. it overwhelmed me with stress, shock, anger, grief, frustration, embarrassment, worry, disappointment and depression. i felt ashamed of my child. i used to ask myself constantly: ‘why did i give birth to this kind of a child?; what was the cause?; is it god’s punishment?; am i bewitched?’. it was not easy at all; i had no life. i could not go anywhere. i did not have enough time to be social because i had no one to help me. the experiences of parenting a child with a disability are painful. having to navigate the lonely space is excruciating (sadiki et al. 2022). there was no psychological support and i avoided public areas because i did not want the community to know that my child was disabled and i was shy. i experienced hardships without any form of emotional and social support. especially in moments when families and close colleagues were unsupportive. this insufficient psychological support created distress while parenting a child with disability. many parents experience a great deal of emotional stress and burnout when taking care of their children (tigere & makhubele 2019). i had no social or emotional support when raising my child and i avoided public places to keep him away from the community. a sense of belonging in the social support group: my life changed forever in 1993, i was introduced to a support group of mothers of children with disabilities by a woman who was a member of the disabled people south africa (dpsa). meeting with other parents of children with disabilities helped me experience less stress and gain confidence through sharing parenting experiences. my encounter with the support groups restored my self-esteem, dignity and confidence. this echoes with tigere and makhubele (2019), who maintained that support groups are instrumental in giving psychosocial support to parents of children living with disabilities. the support helped me to normalise the experiences of parenting my child with disabilities. this improved my self-image and the upbringing of my child. the support group had a significant advantage as it provided me with opportunities to express my experiences in a mutually supportive manner. it was a platform to share, guide and learn from other mothers’ experiences. i was equipped with knowledge and skills to advocate for my son’s rights and seek services for him. sharing my experience with other mothers played a major role in my self-confidence. for example, i became aware of the care dependency grant for children with disabilities through sharing my hardships with other mothers. this openness was therapeutic because we were sharing common matters that affected our wellbeing and the rights of our children. working together in support groups was an opportunity to share difficulties experienced when mothering a child with disabilities. it was also an intervention to overcome challenges. my participation in the support groups enabled me to engage in self-advocacy and self-representation. during networking, i realised that i was not the only mother, with a child with disabilities, who had challenges, and that i can be of some assistance to others too. this led to my voluntary participation within rural community development initiatives, such as capacity building workshops, creating disability advocacy forums and offering mentoring activities to mothers of children with disabilities. i am pleased to be an active agent mother of a child with a disability and dedicated to advocate for the rights of children with disabilities. i am a disability inclusion activist. i salute the existence of support groups for the role they played in my empowerment through the parent’s empowerment workshops, training, seminars and conferences. i was among the first group in 2003 to register for a postgraduate programme in disability studies to further empower myself and deepen the advocacy in the group. this exposure enabled me to benefit from participation in international disability and human rights development forums in countries like canada, the netherlands, australia, lesotho, norway, and namibia. these sessions have undoubtedly contributed to the richness of my knowledge on disability rights matters. the exposure also created a platform to further the promotion of disability inclusion. strengthening partnerships with other disability organisations and parent structures can play a significant role in addressing societal attitudes. conclusion the positive attitudes from support groups was one of the mechanisms that enabled me to cope with my daily tasks. i know more about my child and i have acquired a wealth of knowledge from the support groups. i have learned that participating in support groups enabled me to have a clear understanding of disability legislations frameworks. i can advocate and lobby for the rights of children with disabilities without fear. according to pedro, goldschmidt and daniels (2019), support groups are instrumental for equipping mothers with helpful information to gain confidence. i encourage mothers to collectively advocate for the rights of children with disabilities through support groups. the department of social development has an important role in the formation of support groups for parents of children with disabilities (tigere & makhubele 2019). disability advocacy organisations must champion disability awareness rights of parents and children with disabilities in communities. the perceived social support and resilience can significantly reduce the stress of parenting a child with disability in most contexts. it is desired that this article will stimulate future research to contribute to the significance of support groups, and my experiences of parenting a child with disability. my experiences will inspire other mothers to participate in support groups and affiliate to organisations of parents of children with disabilities or lead such groups. acknowledgements i am gratefully to share the experiences. competing interests the author declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. author’s contributions m.c.s. is the sole author of this research article. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of the author. references cabiati, e., 2021, ‘social workers helping each other during the covid-19 pandemic: online mutual support groups’, international social work 64(5), 676–688. https://doi.org/10.1177/0020872820975447 cauda-laufer, n., 2017, ‘raising a child with a disability: coping mechanisms and support needs’, pcom psychology dissertations 432, viewed 30 september 2022, from http://digitalcommons.pcom.edu/psychology_dissertations/432 dehghan, l., dalvand, h., hadian rasanani, m.r. & kelly, g., 2022, ‘exploring the process of health in mothers of children with cerebral palsy: changing “clinical reasoning”’, british journal of occupational therapy 85(4), 283–291. https://doi.org/10.1177/03080226211020659 dodge, a., gibson, c., williams, m. & ross, k., 2022, ‘exploring the needs and coping strategies of new zealand parents in the neonatal environment’, journal of paediatrics and child health 58(6), 1060–1065. https://doi.org/10.1111/jpc.15908 lei, x. & kantor, j., 2021, ‘social support and family functioning in chinese families of children with autism spectrum disorder’, international journal of environmental research and public health 18(7), 3504. https://doi.org/10.3390/ijerph18073504 mcnally, a. & mannan, h., 2013, ‘perceptions of caring for children with disabilities: experiences from moshi, tanzania’, african journal of disability 2(1), art. #21, 10 pages. https://doi.org/10.4102/ajod.v2i1 pedro, a., goldschmidt, t. & daniels, l., 2019, ‘parent-carer awareness and understanding of dyspraxia: implications for child development support practices’, journal of psychology in africa 29(1), 87–91. https://doi.org/10.1080/14330237.2019.1568092 sadiki, c., mji, g., nicholls, l. & franco, l., 2022, ‘reciprocity in knowledge production: a cornerstone for disability inclusion’, in m.h. rioux, j. viera, a. buettgen & e. zubrow (eds.), handbook of disability, pp. 1–21, springer, singapore. tigere, b. & makhubele, j.c., 2019, ‘the experiences of parents of children living with disabilities at lehlaba protective workshop in sekhukhune district of limpopo province’, african journal of disability 8, a528. https://doi.org/10.4102/ajod.v8i0.528 article information authors: arne h. eide1 watson khupe2,3 hasheem mannan4 affiliations: 1sintef technology and society, oslo, norway2muscular dystrophy association, bulawayo, zimbabwe 3federation of organizations of disabled persons, bulawayo, zimbabwe 4nossal institute for global health, university of melbourne, australia correspondence to: arne eide postal address: sintef technology and society, pb 124 blindern, 0314 oslo, norway dates: received: 17 july 2013 accepted: 19 nov. 2013 published: 04 june 2014 how to cite this article: eide, a.h., khupe, w. & mannan, h., 2014, ‘development process in africa: poverty, politics and indigenous knowledge’, african journal of disability 3(2), art. #75, 6 pages. http://dx.doi.org/10.4102/ ajod.v3i2.75 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. development process in africa: poverty, politics and indigenous knowledge in this original research... open access • abstract • introduction • disability and poverty • disability and politics • disability and indigenous knowledge • conclusions • acknowledgements    • competing interests    • authors' contributions • references abstract top ↑ background: persons with disability run the danger of not profiting from the development process due to exclusion from basic services and opportunities. still, the knowledge base on exclusion mechanisms is relatively weak and there is a danger that important aspects are not addressed as they are hidden behind established understandings that are not critically scrutinised. objectives: the main purpose of this article was to highlight critical thoughts on prevailing knowledge of the relationship between disability and poverty, the policy base for addressing the rights of persons with disability, and culture as a key component in continued discrimination. method: this article aimed at integrating three papers on the above topics presented at the 2011 african network for evidence-to-action on disability (afrinead) symposium. the researchers have therefore thoroughly examined and questioned the relationship between disability and poverty, the influence of policy on action, and the role of culture in reproducing injustice. results: the article firstly claims that there are limitations in current data collection practice with regards to analysing the relationship between poverty and disability. secondly, ambitions regarding inclusion of persons with disability in policy processes as well as in implementation of policies are not necessarily implemented in an optimal way. thirdly, negative aspects of culture in discrimination and bad treatment of disabled need to be highlighted to balance the discussion on disability and culture. conclusion: a critical view of prevailing understandings of disability and development is key to producing the knowledge necessary to eradicate poverty amongst persons with disability and other vulnerable groups. not only do we need research that is actually designed to reveal the mechanisms behind the disability–poverty relationship, we need research that is less tied up with broad political agreements that is not necessarily reflecting the realities at ground level. introduction top ↑ according to the world health organization, disability affects as many as 15% of the world population (who 2011). whilst this figure is highly uncertain and clearly influenced by the prevailing definition of disability, it is nevertheless an important indication of the magnitude and impact of disability on individuals, families, local communities and societies. the increasing interest in disability in low-income contexts is due amongst other things to the united nations convention on the rights of persons with disability (crpd) (un 2006) and a growing awareness that disability needs particular attention if the millennium development goals (mdgs) (un 2000) are to be reached. in order to eradicate discrimination and bring persons with disability into mainstream society, we need to understand the mechanisms that contribute to the disadvantaged situation of persons with disability globally. in this article three perspectives will be discussed in order to illuminate these mechanisms, that is, poverty, politics and culture. the main purpose of the article is to highlight critical thoughts on prevailing knowledge of each of these perspectives in order to contribute to progress in the discourse on disability and development. the article is an integration of three papers presented at the 2011 african network for evidence-to-action on disability (afrinead) symposium: the section on disability and poverty is based on the experiences of the first author with regard to disability statistics in poor countries; the section on disability and politics is based on the third author’s experience with regard to studies on disability policy; the section on disability and indigenous knowledge is based on the second author’s experiences as a zimbabwean activist with disability. disability and poverty top ↑ there is currently broad agreement amongst researchers and activists that disability leads to poverty and poverty leads to disability (e.g. eide & ingstad 2011; yeo & moore 2003). an increasing empirical basis has provided support to the idea of a relationship between disability and poverty, for instance the national surveys undertaken by sintef and partners in southern africa over the last 10 years (eide et al. 2011) and the recent analyses of data from the world health survey (mitra, posarac & vick 2012). common to all such studies of relevance to disability and poverty are, firstly, that they are all cross-sectional, providing evidence of associations but not of causal relationships. secondly, none of the studies published so far have been designed originally to study the disability–poverty relationship, therefore they are not optimal and have certain validity problems that are not addressed. no data currently exist that for instance could test the complex model presented by yeo and moore (2003). this relatively weak empirical basis has also delivered results that should entice critical debate, as results do not always support the disability–poverty relationship; some has yielded results that counter the general assumption, and in many cases demonstrate that the differences between people with disability and people without disability are not always as dramatic as expected (e.g. loeb et al. 2008). without missing the big picture of obvious discrimination, comparably less access to basic services, and lower standard of living, it may therefore be timely to critically review existing empirical knowledge and call upon research that is properly designed for testing the disability–poverty relationship. both disability and poverty are contested concepts that have undergone very important developments over the last few decades. these developments are directly relevant to how the relationship between them is studied. firstly, the international classification of disability, functioning, and health (who 2001) attempts to merge the medical and social models of disability and in effect shifts the balance in who’s understanding from the individual and his or her impairment to social participation and environmental barriers. recent critical analyses (hughes & paterson 2010; shakespeare 2006) have contributed to balancing the medical versus social discourse into an understanding that both perspectives are needed in explaining and analysing the relationship between poverty and disability. a human rights approach to disability has emerged over the last decade or so, with the adoption of the crpd as a major milestone (un 2006), strengthening the responsibility at the societal level to avoid any form of discrimination against persons with disability. secondly, poverty is increasingly seen as a multidimensional concept (palmer 2011) and various approaches, such as the basic needs approach, the economic resources approach, and the capability approach, may have different implications for the study of disability and poverty. it is claimed, however, that the prevailing understanding of poverty has moved away from a single measure related to consumption, and instead incorporates a broad spectrum of life domains: even the understanding of poverty has broadened from a narrow focus on income and consumption to a multidimensional notion of education, health, social and political participation, personal security and freedom, environmental quality, and so forth. (wolfensohn & bourguignon 2004:3) the factual overlap of these two broadened understandings (of disability and poverty) not only provides a conceptual support for their inter-relationship, but also invites a much broader approach to measurement (of disability and poverty) and analyses of the disability–poverty relationship. a human rights approach has clearly penetrated both discourses (on poverty and on disability), and it is interesting to note that the conceptual development implies that the relatively heavy attacks on previously individualised understandings from the disability movement and activists have been effective to a large extent in changing the basis for research on these phenomena (see e.g. beresford 1996; coleridge 1993). as the concepts of poverty and disability have broadened, so have research interests in the field. a range of qualitative studies have presented both thorough descriptions of persons with disability living under poor conditions and more analytical contributions linking individuals’ lived experiences to concepts like social suffering and structural violence (see e.g. eide & ingstad 2011). qualitative studies are able to provide a deeper insight into how disability and poverty plays out together in different contexts, thus contributing very important descriptions and analyses of micro-level mechanisms and how they are directly influenced by social and societal structures. these studies also make it evident that individualisation of disability and poverty has its limitations when the main problems are social or structural. it is argued that the complexity of disability and poverty requires that research, in order to further scrutinise the disability–poverty relationship, needs to combine perspectives and methods to drive the generation of new knowledge. in combination, different methodological approaches can contribute both to establishing evidence of injustice and differences between groups, and to describing and analysing the reality at ground level, and how individuals live their lives in specific contexts. whilst qualitative studies are well suited to bringing forward the voices of persons with disability, their perspective and interpretations, disability statistics may contribute to testing relationships between disability and poverty and generate knowledge that can be generalised to larger populations. disability and politics top ↑ in africa, there are a number of key organisations contributing to the progressive realisation of the rights of persons with disabilities. in particular, these actors bring attention to rights of persons with disabilities in the political discourse. the secretariat of the african decade of persons with disabilities (sadpd) is one of these. the sadpd is engaged in disability advocacy and policy implementation processes by working in partnership with the african union (au), governments, civil society and continental, regional and national disabled people’s organisations (dpos) in africa. another leading actor is the southern africa federation of the disabled (safod), a non-governmental human rights organisation. safod was founded as an umbrella organisation for the national dpos in the southern africa development community (sadc). most significantly, the current united nations special rapporteur, shuaib chalklen, from south africa, continues to make extensive contributions to the advancement of persons with disabilities within both regional and global frameworks. in some of the sadc countries, in particular angola and south africa, the disability movement is politically well connected and highly influential, while in other countries dpos seem to be detached from the country’s political processes. the united nations convention on the rights of persons with disabilities (crpd) (un 2006) was adopted by the united nations general assembly in 2006, entered into force on 03 may 2008, and to date has been ratified by 132 member states. the crpd is the first legally binding international instrument with comprehensive protection of the rights of persons with disabilities, and sets out the legal obligations of states to promote and protect the rights of persons with disabilities worldwide. the committee on the rights of persons with disabilities indicates that the reports of 10 state parties would be due in the course of 2013, bringing the expected total to 69 reports by the end of 2013. however, the report of the committee on the rights of persons with disabilities (un 2013c:1) states that ‘at its current pace of work, the committee is facing a backlog of pending reports that amounts to an eight-year delay between their receipt and examination’. the fact that persons with disabilities are not included in any of the millennium development goals, targets or indicators is likely to be remedied given some recent developments, including the general assembly resolutions on realising the goals for persons with disabilities (see resolutions 62/127 (un 2008a), 63/150 (un 2008b), 64/131 (un 2009), 65/186 (un 2012a), 66/124 (un 2012b) and 67/140 (un 2013b)). most importantly, early in 2013 the high level panel on the post-2015 development agenda released a new global partnership: eradicate poverty and transform economies through sustainable development (un 2013a). this report sets out an agenda to eradicate extreme poverty by 2030, and deliver on the promise of sustainable development with a number of substantive references to persons with disabilities. the report calls for a transformative shift with the mantra ‘leave no one behind’ and names several vulnerable population groups including persons with disabilities. the report calls for indicators that are disaggregated data on disability and stresses that targets should only be considered ‘achieved’ if they are met for all relevant income and social groups. disability is also represented in goals 1 (eradicating poverty) and 3 (providing quality education and lifelong learning). the report emphasises including persons with disabilities as one of the key stakeholders of strategic relevance along with other excluded groups and institutions in all post-mdg actions and processes. the report recognises that disability forms part of inequality as a cross-cutting issue and advocates the effective and meaningful inclusion of persons with disabilities in all development actions and processes. this year’s world health assembly saw the endorsement of the action plan for the prevention and control of non-communicable disease (ncd) 2013–2020 (who 2013). the development of the action plan follows another important milestone, namely the un general assembly convening a high-level meeting in 2011 which brought world leaders together to build awareness and consensus, and which culminated in the adoption of a political declaration on realisation of the mdgs for persons with disability (un 2012a). in keeping with the tradition of public health its goal is to ‘reduce the preventable and avoidable burden of morbidity, mortality, and disability’ (un 2012a:4). it calls for member states to: contribute on a routine basis, information on trends in non-communicable diseases with respect to morbidity, mortality by cause, risk factors and other determinants, disaggregated by age, gender, disability, and socioeconomic groups. (p. 32) this call for disaggregation by disability is significant given that a vast majority of the leading 20 health conditions associated with disability is non-communicable diseases. the action plan also states that ‘non-communicable disease related to disability (such as amputation, blindness, or paralysis) puts significant demands on social welfare and health systems’ (un 2012a:2). in addition, it emphasises that ‘rehabilitation needs to be a central health strategy in non-communicable disease programmes’ and seeks access to rehabilitation services to maintain health and functioning (p. 2). research evidence of the advancement of the rights of persons with disabilities through policy development and analysis mechanisms within african nations is becoming increasingly available. for example, schneider et al. (2013) analysed 11 african union (au) policy documents to ascertain their focus on people with disabilities. the analysis confirmed that these documents provided broad guidelines for individual countries to develop their own national level policies and guidelines. however, very few of them provided implementation plans or monitoring and evaluation guidelines. also, mannan et al. (2012) evaluated disability and rehabilitation policies of malawi, namibia, sudan and south africa. the analysis indicated that adequate disability and rehabilitation policies remain mostly undefined, which presents leadership and governance with the opportunity to set this right. african policy on disability and development (a-podd) researched the need for disability to be included on the agenda of the poverty reduction strategy papers (prsp). the study reported that whilst the prsp formulation process in malawi was described as participatory, the disability movement was largely excluded and disability issues were omitted from the document (wazakili et al. 2011a). it also emerged that the disability movement did not participate in the three prsp formulation processes in sierra leone; the first prsp process is described as a ‘government-donor affair’, the second as ‘more consultative’, and the third as ‘top-down’, and civil society was consulted only to endorse the document, which was based on the ruling party’s manifesto (wazakili et al. 2011b). in uganda, the study indicated that the lack of utilisation of disability-related research evidence contributed to the exclusion of disability issues from programmes targeting poverty reduction (chataika et al. 2011b). in ethiopia, the lack of disability-specific data has negatively affected the inclusion of disability issues in socio-economic planning and implementation programmes (wazakili et al. 2011b). existence of good quality data may increase visibility of disability issues in policy processes, will inform decision and resource allocation, and can be useful for advocacy purposes. these studies thus highlighted greater need to for both utilisation of evidence where available and establishing appropriate disability-specific data in advocacy efforts leading to policy development in africa. whilst disability policy has developed in a very positive direction, with the crpd and its influence on other international, regional and national policies, and largely incorporating a view of disability as a human rights issue, there are problems with implementation. it is therefore unfortunately the case that the optimism surrounding the crpd in particular may have a bleak flipside, that is, the celebration of good policies with no effect on the lives of persons with disabilities, in particular in poor contexts where the gap between policy and reality is most pronounced. it is argued that reducing the apparent gap between evidence and policy may alleviate this problem. disability and indigenous knowledge top ↑ the literature on indigenous knowledge and disability is mixed. several authors claim that most indigenous perceptions on disability are positive (devlieger 2010; mapara 2009; ogechi & ruto 2002). literature has argued that observed negative practices pertain to poverty and lack of choices rather than negative perceptions of disability. however, most of this literature presents a mixed view (ingstad 1997; whyte & ingstad 1995) in that it also describes negative practices against persons with disability that may be rooted in traditional perceptions and practices. others, such as lang and charowa (2007), have highlighted negative attitudes. in the spirit of this article, which is aimed at presenting a critical view on key aspects of disability and development, and in light of the fact that a balanced view of disability and indigenous knowledge is necessary, this section describes the negative attitudes and practices experienced in zimbabwe, based on the experiences and reflections of a zimbabwean disability activist (the second author).those who claim that an ethnic group or nation without culture is like a naked person must also concede that at times culture can be used to discriminate against disabled persons. even during these modern times indigenous people still use culture to justify discrimination against persons with disabilities. in zimbabwe, cultural reasons are often used successfully as convenient tools to oppress persons with disability and deny their rights. although there have been nominal positive change as a result of campaigns to stop certain cultural practices that sustain discrimination against disabled persons, some oppressive aspects of culture are still intact. this was confirmed by marongwe and mate (2007), as follows: sometimes disability is seen as a sign that the women’s ancestors are angry and wish to be appeased. or, it is attributed to other causes often associated with the baby’s mother’s family or her (immoral) behavior. men are given to saying that because there are no known persons with disabilities (pwds) in their family the child with disability should not belong to their family. (p. 25) the rationale here is that nobody can be born with a disability unless there is some witchcraft or divinely generated compound punishment involved. in most cases, each ethnic group: has its cultural norms or agreed policy on disabled people within the family or community. but the ultimate result of that norm [can be] to confine a disabled person to subhuman status. (khupe 2010) for instance, amongst the bakalanga ethnic group of western zimbabwe, ‘once a plate or cup has been used by a disabled person it becomes ritually unclean beyond redemption so that no other “normal” human being can use it’ (khupe 2010). disability generally was and in many instances still is thought to be spiritually contagious. amongst the bakalanga, when a person with disability dies, the usual burial and post-burial rituals and rites are not performed because it is believed that doing so would bring back the spiritual curse that was attached to that person. all that belonged to him or her is buried with him or her or burnt to ashes. in another example, amongst the ndebeles in zimbabwe, a pregnant woman must spit at her tummy whenever she is ‘unfortunate’ to meet a person with disability. failure to spit on the tummy is thought to cause the woman to give birth to a child with disability. in fact, culturally ndebele women are discouraged from visiting places where there is a possibility of them meeting a person with disability. in some traditional contexts, disability is associated with everything that is negative and evil. such negative cultural embellishment spills over to other spheres of life. according to lang and charowa (2007): disabled people encounter multiple attitudinal, environmental and institutional barriers that militate against their effective inclusion with zimbabwean society. it is a common perception within zimbabwe that disabled people are passive and economically unproductive, and therefore constitute a burden upon society. (p. 7) in many parts of zimbabwe, many indigenous people believe that the best witch doctor or traditional black magician with the most dangerous traditional medicine, including charms and talismans, must be a person with disability. ironically, it is culturally agreed by indigenous people that no lucky charms can be prescribed by a disabled sangoma or n’ganga. such myths about people with disability have not been easy to dispel, particularly from followers of african traditional religion. according to cultural myths, people with disability are the natural hosts of bad spirits. as such, bad luck or incurable disease must be deposited into the person with disability via different forms of rituals. a common ritual involves having ‘extra-ordinary sex’ with a woman or girl with disability (khupe 2010). another ritual involves transferring the bad luck, disease or bad spirit to a person with disability through a gift which would have been ritually imbedded secretly with bad luck or disease that must be handed over directly to the person with disability. some sangomas or n’gangas are said to take urine and faeces from a blind woman mixed with some roots to come up with charms that is given to criminals to evade arrest by law enforcement agents. it is believed that such traditional medical concoctions make criminals immune from arrest, hence disability is culturally associated with abnormality and evil. it is clear that the understanding of disability in traditional communities in africa, and practices derived from these various understandings, comprise a mix of both ‘positive’ and ‘negative’ patterns, that culture is heterogeneous and changing, and that the cause of negative practices may be found in poverty. however, many forms of abuse of persons with disability perpetrated under the cloak of culture are still prevalent. the more such practices are exposed, the more people move towards their eradication. the crpd could be a tool for securing basic human rights for persons with disability and putting an end to discriminatory cultural practices conclusions top ↑ the three perspectives discussed above all present critical views on current established knowledge in the disability and development discourse. firstly, the relationship between disability and poverty is based on limited empirical data. it runs the danger of ‘politically correct’ understanding and opinions undermining the scientific basis in that much of the existing research seems to accept rather uncritically that there is a close relationship. whilst this very well may be correct, research based on the prevailing understanding as a set precondition will not easily pick up nuances and contradictions and thus run the danger of producing biased results that is not conducive to knowledge production in the long run. this may hamper the contribution of research to support, for instance, the implementation of the crpd. secondly, whilst there are important instruments for implementing policies that support persons with disability and their struggle to access basic services and equal opportunities, it seems clear from the experience with the african policy and development study (a-podd) (chataika et al. 2011a) that these are not sufficient. even though there are positive developments with regards to policy, the structures that have been responsible for discrimination historically are the very same who will implement the crpd, and changing discriminatory practices goes deeper that the policy level. thirdly, whilst it seems that there is an abundance of culturally and discriminatory practices that cement the exclusion of persons with disability from a normal life, this phenomenon has received limited attention from anthropologists and others within cultural research. it may be argued that much of the cultural research have been blind towards the negative aspects of culture, and at least very limited interest has been shown in revealing such negative practices. if this argument is correct, then this flaw in research may even contribute to upholding the skewed distribution between persons with and without disability in terms of material goods as well as opportunities and access to services in poor countries. the intention of this article has been strictly to present the views and experiences within a specific african context. whilst the authors acknowledge the need for a balanced view and for caution with regard to portraying traditional practices in a negative way, it is important to acknowledge that the negative aspects exist alongside the positive aspects found by several authors. the authors believe that a critical view of prevailing understandings of disability and development is key to producing the knowledge necessary to eradicate poverty, also amongst persons with disability and other vulnerable groups. not only do we need research that is actually designed to reveal the mechanisms behind the disability–poverty relationship, we need research that is less tied up with broad political agreements that is not necessary reflecting the realities at ground level. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions a.h.e. 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http://dx.doi.org/10.1016/s0305-750x(02)00218-8 abstract introduction research method and design reliability and validity results discussion limitations conclusions acknowledgements references footnotes about the author(s) kerstin m. tönsing centre for augmentative and alternative communication, university of pretoria, pretoria, south africa karin van niekerk centre for augmentative and alternative communication, university of pretoria, pretoria, south africa georg schlünz human language technology research group, meraka institute, council for scientific and industrial research, pretoria, south africa ilana wilken human language technology research group, meraka institute, council for scientific and industrial research, pretoria, south africa citation tönsing, k.m., van niekerk, k., schlünz, g. & wilken, i., 2019, ‘multilingualism and augmentative and alternative communication in south africa – exploring the views of persons with complex communication needs’, african journal of disability 8(0), a507. https://doi.org/10.4102/ajod.v8i0.507 original research multilingualism and augmentative and alternative communication in south africa – exploring the views of persons with complex communication needs kerstin m. tönsing, karin van niekerk, georg schlünz, ilana wilken received: 12 feb. 2018; accepted: 27 sept. 2018; published: 24 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: augmentative and alternative communication (aac) can assist persons with complex communication needs to communicate competently with a variety of communication partners in a variety of contexts. however, aac systems and intervention often do not take multilingual aspects into consideration. objective: this small-scale exploratory study had three aims, namely: (1) to describe the self-reported language skills of multilingual south african adults using aac, (2) to describe the languages and communication modalities they used in interaction and (3) to obtain their views regarding access to various languages. methods: twenty-seven adults using aac were recruited via an empowerment programme, as well as an email list for persons interested in aac, and provided responses to a questionnaire. to compensate for access and written language challenges, the questionnaire was administered with help and/or as a face-to-face interview where needed. responses were analysed using mostly descriptive statistics. results: participants generally could not express themselves in all the languages they understood and were regularly exposed to. speech-generating devices specifically gave access almost exclusively to english. participants expressed a desire to increase their expressive language repertoire, and mentioned both limitations of communication technology as well as their own literacy skills as barriers to overcome in this regard. conclusion: in order for multilingual south african adults using aac to express themselves in multiple languages, appropriate aac systems and interventions as well as literacy learning opportunities need to be developed and provided. keywords: adult, augmentative and alternative communication; multilingualism; complex communication needs, language and communication skills; self-report, views. introduction augmentative and alternative communication (aac) encompasses techniques, symbols, strategies and aids that can be used by persons with complex communication needs whose speech is too limited to meet all their communication needs (american speech-language-hearing association 2018). augmentative and alternative communication systems include aided systems (e.g. speech-generating devices [sgds] and communication boards) and unaided options (e.g. gestures and manual signs from a sign language). the focus of this article is on persons who need aac long term for primarily expressive purposes (i.e. their ability to comprehend spoken language is relatively intact). for this group, a linguistic method of expression that allows the generation of self-composed novel utterances is typically desirable, as this allows true autonomy in communication (light & mcnaughton 2012). a method of expression that additionally aligns to the language(s) used within the communities they are part of allows for community integration and direct communication access to frequent communication partners without the need for translation. orthography-based aac methods allow for the composition of novel messages, but persons using them need to be literate in the appropriate natural languages. partners also need to be literate, unless text-to-speech (tts) synthesis1 is used via sgds. in the absence of literacy skills, picture symbol-based aac systems may be used, whereby vocabulary items in one or more languages are represented by picture symbols or picture symbol sequences, and made available on communication boards or sgds. these pictures are typically custom-designed collections that are integrated into the sgd software and/or are commercially available. examples include picture communication symbolstm 2, symbostix3, widgit4 and minspeak® symbols. only systems that include a large, relevant vocabulary composed of a variety of word types can presume to give access to a degree of novel utterance generation (light & mcnaughton 2012). there is as yet a dearth of research in aac implementation for multilingual clients (kulkarni & parmar 2017; soto & yu 2014). in spite of the prevalence of multilingualism amongst the general population as well as persons with communication disorders, studies in communication development, disorders and aac have primarily focussed on monolingual populations and monolingual interventions (kohnert 2013). studies that document the implementation of bior multilingual aac systems seem at present to be limited to case studies and anecdotal reports (e.g. harrison-harris 2007; stewart 2017). there may be a number of reasons. there is a prevailing notion that multilingualism may be difficult for clients with communication disorders, especially those who experience these disorders from a young age (de valenzuela et al. 2016; drysdale, van der meer & kagohara 2015; gutierrez-clellen 1999; levey & sola 2013; yu 2013). as yet, no empirical evidence supports these suppositions (kay-raining bird, genesee & verhoeven 2016; kohnert 2013; kohnert & medina 2009). however, communication interventionists may still advise clients and families to use only one language (yu 2013). much of the research and technology developments in aac have been conducted in high-income countries, and specifically in the usa. multilingualism has been less prevalent in the usa than in other countries (grosjean 2013), with english clearly established as the majority language (kaplan 2015). however, an increase especially in the hispanic population in the usa has led to renewed interests in the integration of various languages in the us education system, and has also increased the recognition of the benefits and value of multilingualism (lee & wright 2014; lozanso-alonso 2017). even so, developments in aac have historically focussed primarily on persons from monolingual and specifically english language backgrounds (bridges 2004). parents of children in need of aac who come from non-english backgrounds have remarked on challenges in aac service delivery related to multilingual aspects, including a lack of aac systems that give access to languages other than english (huer, parette & saenz 2001; pickl 2011; singh et al. 2017). the act of communication and the use of language to achieve this is not only an act of sharing information, but at the same time an act to, consciously or unconsciously, assume, assert and recreate one’s identity, power status and group affiliation (bordieu 1991; norton & columbia 2011). south african adolescents, for example, described their home language as their ‘structure’, their ‘skeleton’ and ‘part of who you are’ (ndlangamandla 2010:67), and as ‘my being and my life’, ‘my culture’ and ‘my grounding’ (bristowe, oostendorp & anthonissen 2014:232–233). for multilingual speakers, choice of language and use of mechanisms such as code switching and code mixing may not be neutral acts, but acts of identity that may also serve to show respect, promote group cohesion or align or distance oneself from communication partners (bristowe et al. 2014; mckinney 2013; ndlangamandla 2010). mckinney (2013:25) described, for example, how one of the participants in her study (an adolescent south african girl) viewed her ability to use different languages, including non-standard varieties, as an ability to ‘perform different identities’. by being able to fluently speak isixhosa, english and what is termed ‘tsotsitaal’, she could integrate into various communities seamlessly. achieving social closeness with others through communication may also be contingent upon being able to express oneself in a given language, such as one’s home language when speaking to a close family member (tönsing et al. 2018). as language is a tool of power, access to and choice of one’s use of languages is integral to human freedom and assumes the status of a democratic right (may 2001). the south african constitution (1996, section 30) grants every citizen the right to use the language of his or her choice. as persons who rely on aac are already at risk of powerlessness because of their use of less conventional methods of communication, limiting access to different natural languages may be a further act of exclusion. a person and community’s use of and competence in multiple languages is influenced by a variety of factors, including top-down factors such as language policy in education, and bottom-up factors related to the views, opinions and choices of individuals and communities regarding the use of different languages (webb 2010). in south africa, english (the first language of only 9.6% of the population) dominates the education and business spheres (kathard et al. 2011; khokhlova 2015; webb, lafon & pare 2010), in spite of the official equal status of all 11 official languages granted by the south african constitution post-apartheid (the constitution of the republic of south africa, act 108 of 1996, section 6[1]). the majority of learners in the basic education system, for example, are educated in english, despite the fact that this is not their home language (department of basic education 2011). while some authors argue that this is resulting in language shift and some cases, language loss (de klerk 2002a; kamwangamalu 2003), others maintain that there is little evidence of widespread and extensive language shift towards english and language loss of the other 10 official south african languages (bristowe et al. 2014, coetzee-van rooy 2012, ndlangamandla 2010). these authors report that many south africans seem to be increasingly multilingual, with the home language (defined as the language used most frequently in the home, cf. coetzee-van rooy 2012) being maintained for use in the home, english being added as the language of education and the media, and other languages being added to enhance community integration or work opportunities (coetzee-van rooy 2012). in multiple surveys amongst high school and university students from african and afrikaans language backgrounds, coetzee-van rooy (2016) found that students regarded the ability to use more than one language as very important for south africans, and suggested communication access, respect for diversity and social cohesion as reasons for learning more than one language. the question arises as to how multilingual south africans who use aac negotiate the multilingual south african context. their ability to express themselves in multiple languages not only relies on opportunities to learn different languages and their interest in doing so, but also on appropriate aac intervention, including access to relevant aac systems. as communication intervention in south africa (including aac intervention) is primarily provided in english (dada, murphy & tönsing 2017; kathard et al. 2011), and commercially available aac systems are predominantly available in english (bridges 2004), it seems probable that these factors would restrict access to expression in other languages. understanding to what extent south african adults using aac have the desire and ability to use multiple languages can assist in directing the development of appropriate intervention services as well as appropriate aac systems. aims this exploratory study had three aims: (1) to describe the self-reported language skills of multilingual south african adults using aac, (2) to describe their use of different languages and modalities in interactions and (3) to obtain their views regarding their desire to use multiple languages. research method and design design a quantitative descriptive survey was conducted using a questionnaire. this design was considered appropriate for the current project because it allowed the researchers to reach a larger sample of participants and also provided a response format (primarily closed-ended questions) that did not require participants to provide extensive narrative responses – a process that can be physically fatiguing for persons with physical disabilities. the researchers used various forms of recruitment and various formats of the questionnaire (hard copy, emailed and online) to include more participants. this meant that nine participants completed the questionnaire without the presence of trained research assistants, and the degree to which the responses received truly reflected their own opinions could not be monitored directly. participants participants had to (1) be 18 years or older, (2) have a level of autonomy in expression that ensured that their thoughts and opinions could be captured in an unbiased way and (3) use a form of aac because of having complex communication needs. participants were recruited via an empowerment programme for young adults using aac, and also via an email list of persons interested in aac. this empowerment programme for young adults using aac is run annually at a university-based institution. participants take part in communication and empowerment training activities for the duration of 1 week. participants were approached in person during programme weeks, and alumni were approached via email or text message. a total of 24 persons were approached, and 21 gave consent to participate. as these participants were all known to the researchers in person, the researchers were able to verify that the participants met all the selection criteria. a further seven persons responded to an invitation sent to a south african email list for persons interested in aac (including persons who use aac, family members and service providers) administrated by a university-based institution. this list contains 1138 email addresses; however, because many email addresses may not belong to multilingual south african adults who use aac, it is not possible to report a response rate. to ensure that participants met the selection criteria, they were asked to confirm this by answering three questions related to the three criteria. of the seven respondents, one indicated that he did not require aac because his speech was functional, and this respondent was therefore excluded from the study. of the remaining six respondents to the emailed invitation, only one was not directly or indirectly (via service providers) known to the researchers. however, the respondent contacted the researchers via email after completing the study, and through the emailed exchanges seems very likely that he met the selection criteria. therefore, the researchers are confident that all respondents met the selection criteria. the recruitment and the fact that the questionnaire was only provided in english may have biased the sample towards those with english skills, literacy skills, higher levels of education and a level of professional support. for example, only persons who were in some direct or indirect way linked to the university-based institution (e.g. via their service provider or a family member) had a chance to be included in the study. the empowerment programme at the university is offered primarily in english, although participants may attend if their personal assistants can act as translators. also, participants in this programme are required to have a means of expressing their own thoughts, and this indirectly implies that many have some measure of literacy skills. two respondents (both participants of the empowerment programme) who rated their understanding of english as a little also participated in the survey. for both respondents, the personal assistants or research assistants helping them to complete the survey were fluent in both english and the home language (afrikaans and setswana respectively) and translated the questions for the participant. all respondents to the emailed invitation had good literacy and good english skills. most participants were men and between the ages of 18 and 29 years (m = 30.1, sd = 13.3, range = 18–73). they resided in seven of the nine south african provinces, with the biggest group (n = 9) residing in gauteng. they came from a variety of language backgrounds, with 18 participants (67%) coming from african language backgrounds, while nine (33%) came from english or afrikaans language backgrounds. while it is clear that there is oversampling of persons from englishor afrikaans-speaking backgrounds (who make up 23% of the general population according to statistics south africa 2012), and that such a small sample cannot be representative, it should still be noted that 8 of the 11 official languages were included as home languages. also, the five home languages represented most frequently amongst the participants (see table 1) constitute five of the six most frequently spoken home languages in the general population (statistics south africa 2012). table 1: participant demographics. table 2 summarises the aac systems and strategies used by the participants which had design features to allow a level of novel utterance generation. table 2: orthographyand picture-based augmentative and alternative communication systems and strategies used by the participants. besides what is traditionally described as aided aac (i.e. picture symbol-based communication boards or books, sgds and alphabet boards), other methods such as typing on a cell phone or a computer (without voice output) were also used. materials a questionnaire was developed by the authors to address the research aims. the questionnaire consisted of 33 predominantly closed questions. of the questions, nine pertained to demographic background information, 16 to the adults’ language and communication skills and four to the desire for increased or additional access to languages. two questions pertained to desired communication technology features related to multilingualism – the responses to these two questions were not analysed for the purpose of this article. one open-ended question solicited any further comments that participants wanted to share while a final question asked about the assistance the participant had received in answering the questionnaire. in the section of the questionnaire asking about participants’ desire for increased or additional access to languages, a list of possible reasons for wanting access to (a) particular language(s) was included. the reasons given were based on the previous literature that showed that social cohesion, personal identity, access to various communication partners and a desire to learn and practise using different languages were some of the main reasons that south african adolescents and adults valued multilingualism (bristowe et al. 2014; coetzee-van rooy 2016). this section also included a list of possible reasons as to why access to the identified languages was currently not as desired. the reasons given were based on the previous literature pertaining to barriers to multilingualism experienced by persons using aac (soto & yu 2014, tönsing et al. 2018). in the acknowledgement that the closed options given as reasons in these questions might not capture participants’ perspectives fully, an ‘other’ category was provided in each case, where participants could write their own reasons. the final version of the questionnaire was available in hard copy format, electronic (microsoft wordtm and adobe pdftm) format and also as an online survey, which was developed using the qualtrics research suite5™ survey software. these different formats also aimed to increase the range of response formats available to potential respondents. procedure thirteen participants (all recruited via the empowerment programme) completed the survey at the university, because they attended the programme there. of these 13, one completed the hard copy questionnaire independently. the researchers themselves or trained research assistants administered the survey to the other 12 in a face-to-face interview format. five alumni of the programme were visited in their homes and researchers or research assistants administered the survey as a face-to-face interview. most of these alumni had limited internet access and therefore would have had difficulty responding via email or the online survey. a total of five research assistants were involved in data collection. all had extensive experience in working with persons using aac, and four had a postgraduate qualification in aac. they were all familiar with the persons whom they interviewed as they acted as facilitators during the empowerment programme. they were given an introduction to the study and the questionnaire was discussed with them. response options such as auditory scanning were discussed and demonstrated for particular participants. the assistance given to participants entailed reading the questions and response options to the participants, and transcribing the responses the participants gave by using aac. three further alumni were contacted via email and responded to the emailed invitation within 10 days, without additional reminders. the general invitation to the email list was sent out three times; each time 10 days apart. the six relevant responses to this invitation were all received within 30 days of the first email. all together, these nine respondents either completed the emailed questionnaire (which was either emailed or faxed back) or the online survey. five of these nine respondents reported completing the survey independently, while four had help from a family member, personal assistant, friend and therapist, respectively. analyses information from the questionnaires was captured in the statistical programme spss by the first author. the data were analysed using mainly descriptive statistics. nonparametric inferential statistics (wilcoxon signed-rank test) were also used to determine differences between skills in their home language versus english for a subgroup of participants. ethical considerations ethics approval for the study was obtained from the authors’ respective institutions (169/2016 [csir] and gw20160319hs [up]). information letters and consent forms were provided in easy english enhanced with pictures explaining all aspects of the study. when trained research assistants were assisting potential participants, the information letter and consent form were read out to participants as needed. participants were informed that their participation was entirely voluntary, that they could withdraw at any time. participants recruited via the empowerment programme were also assured that their decision to take part or not take part in the study would not in any way influence their future involvement in the programme. they were informed that their participation held neither risks nor benefits for them. they could opt to receive any reports published from the project. confidentiality is maintained as all identifying data have been removed from this article, and raw data are kept securely with access restricted to researchers and research assistants. reliability and validity various aspects were taken into consideration during the development of the questionnaire to enhance its face and content validity. the questionnaire contained mainly closed-ended questions in order to minimise demands for writing, because composing lengthy text is physically straining for many individuals with physical disabilities. furthermore, some questionnaires were administered with help, and closed-ended questions were deemed to reduce the risk that the participants’ answers were inadvertently interpreted or embellished by those assisting them. questionnaires were composed in easy english. a speech-language therapist with a master’s degree in aac and extensive experience in aac intervention provided feedback on the first version of the questionnaire. three additional background questions regarding current and previous communication intervention were added following her suggestions. the first author checked all the responses to the survey for completeness and any possible inconsistencies (e.g. reporting the ability to write in a particular language but not read in it). in two cases, data were missing (once from an online questionnaire and in one case from a face-to-face administered questionnaire). in two other cases, responses needed to be clarified (once from a faxed questionnaire and once from a face-to-face administered questionnaire). the first author made contact with these four participants via email, whatsapp or in person and obtained the missing data or clarified the responses. to ensure that the data were captured reliably in spss, a research assistant checked it against all the original questionnaires. she noted any discrepancies. the first author checked the discrepancies and corrected entries where necessary. only three discrepancies out of 3864 entries needed correction. results the results are presented according to the three aims of the study, namely: (1) to describe the self-reported language skills of multilingual south african adults using aac, (2) to describe their use of different languages and communication modalities in interactions and (3) to obtain their views regarding a desire to use multiple languages. self-reported language comprehension and written language skills participants were requested to rate their proficiency in spoken language comprehension, reading and writing on a scale from 1 (not proficient at all) to 5 (very proficient) in relation to the 11 official south african languages, as well as any additional languages. on average, participants understood multiple languages (m = 5.3, sd = 2.9, range = 2–11), with african language participants (n = 19) understanding more languages (m = 5.8, sd = 2.8, range = 2–11), than participants from english or afrikaans home language backgrounds (n = 8, m = 4.2, sd = 3.0, range = 2–11). participants understood an average of 2.8 languages well (rated as 4 – understand quite a lot, or as 5 – understand everything), with a standard deviation of 1.1 (range = 2–6). all rated their proficiency in their home language as high (m = 4.9, sd = 0.3, range = 4–5). all the participants understood english, with all but two rating their proficiency as 4 or 5. two participants rated their proficiency at 2 (understand a little). both of these participants had congenital disabilities and had never received any formal schooling. it is clear that the sample mirrors the multilingual south african population, and also the pervasiveness of english. regarding writing skills, most participants reported being able to read in multiple languages (m = 3.6, sd = 2.3, range = 1–11), and also write in multiple languages (m = 2.7, sd = 1.7, range = 0–8). the number of languages in which they were able to read well (rated as 4 or 5) was 1.7 on average (sd = 0.9, range = 0–4), while the number of languages in which they were able to write well (rated as 4 or 5) was 1.6 (sd = 0.9, range = 0–3). regarding their home language, reading and writing proficiency was, on average, rated at 3.7 (sd = 1.5, range = 1–5) and 3.5 (sd = 1.7, range = 1–5), respectively. english versus home language skills the proficiency of spoken language comprehension, reading and writing in the home language was compared to that in english for participants from non-english backgrounds (n = 24). results are depicted in figure 1. figure 1: home language versus english proficiency in spoken language comprehension, reading and writing for participants from non-english backgrounds. participants’ comprehension of their home language was generally better (m = 4.9, sd = 0.2, range = 4–5) than their understanding of english (m = 4.5, sd = 0.8, range = 2–5). conversely, written language skills were generally better in english, with reading skills estimated at an average of 4.3 (sd = 1.2, range = 1–5) and writing skills at 4.0 (sd = 1.4, range = 1–5). in the home language, reading skills were estimated at an average of 3.5 (sd = 1.5, range = 1–5) and writing skills at 3.0 (sd = 1.7, range = 1–5). a wilcoxon signed-rank test revealed statistically significant differences between participants’ spoken language comprehension in their home language versus english on a 5% level of significance, z = −2.13, p = 0.03, with a small effect size (r = 0.31), and between their home language and english reading skills, z = −2.00, p = 0.045, with a small effect size (r = 0.28). no statistically significant difference was found between writing skills in the home language and in english, z = −1.84, p = 0.065. languages and modalities used in interactions participants were requested to indicate which modalities, and which languages they used for expressive purposes in face-to-face interactions. they were also asked to rate the frequency with which they used the modalities and the various languages on a scale of 1 (never) to 5 (very often). although all participants used one or more forms of non-linguistic unaided communication (such as vocalisations, gestures and eye-pointing), these forms are typically not linked to a particular spoken language and are therefore not focussed on in the results. regarding modalities, 26 participants used orthography-based methods – mostly this entailed typing on a cell phone. overall, these forms were rated to be used quite often (m = 4.2, sd = 1.4). alphabet boards, communication boards and sgds were used by 24 of the participants, and, on average, rated to be used quite often (m = 3.5, sd = 1.5), while speech was used by 19 participants (despite having complex communication needs) and rated to be used with an average frequency of 3.3 (i.e. sometimes, sd = 1.8). regarding languages used in face-to-face interactions, participants used an average of 2.1 different languages (sd = 0.7, range = 1–4). as expected, they used fewer languages in interaction than they understood. of the 24 participants from non-english backgrounds, 19 used their home language in face-to-face interactions, primarily by using speech (n = 17), and, to a lesser extent, orthography-based methods (n = 10). only six participants from this group (25%, n = 24) used communication boards, alphabet boards or sgds to express themselves using their home language – four of these were from afrikaans language backgrounds (n = 6) and two from african language backgrounds (n = 19). within this group, 18 participants had sgds, but only one had tts synthesis available in her home language (using a low-quality freely available afrikaans synthetic voice). three other participants (one from afrikaans and two from isizulu language backgrounds) used recorded speech in their home language (in addition to english tts) on their sgds. recorded speech does not easily allow the spontaneous generation of novel utterances, and is therefore more limiting. five participants in this group could not use their home language in face-to-face interactions. all english participants used english through orthography-based methods and english tts synthesis on their sgds in face-to-face interactions. only three participants used sgds to give access to more than one language – through using both recorded speech and tts synthesis. alphabet boards were used in two languages by five participants – interestingly always in english and afrikaans. four participants had either language as a home language, while for the fifth participant, neither language was her home language. none of the participants used a picture-based communication board in more than one language. of the 19 participants who used speech, 17 spoke more than one language. of the 26 participants who used orthography-based forms of communication, only 11 used this method in more than one language. overall, three participants (all from african language backgrounds) used only one language to express themselves in face-to-face interactions. as the use of different languages in face-to-face interactions is not only dependent on ability to do so, but also on partners, participants were also asked to indicate which languages others used with them in face-to-face interactions within a typical week. on average, partners used 3.6 different languages when interacting face-to-face with the participants (sd = 2.3, range = 1–11), as compared to the 2.1 different languages that participants typically used. desire to use multiple languages of the participants, 23 wanted to use additional languages, or wanted to increase their use of languages they were already using in interaction. across these participants, access to another language was mentioned 48 times overall. the language mentioned most frequently was isizulu (mentioned 10 times), followed by afrikaans (mentioned eight times) and setswana (mentioned eight times). access to english was mentioned three times – all three participants were from non-english backgrounds. regarding access or increased access to their home language, this was desired by 19 participants – understandably all from non-english backgrounds. participants were also asked to select the reasons why they required increased or additional access for each language they mentioned, by ticking appropriate options from a list of six possible reasons. the results are summarised in figure 2. figure 2: frequency with which reasons for wanting increased or additional access to languages were chosen by the participants. overall, the reason indicated most frequently was that more people would be able to understand them. group cohesion or group identity was mentioned with the next highest frequency, followed by the fact that this was the community’s language, that it was part of their identity and that it would provide them opportunity to practise using that language. the fact that this was the language used in the family was mentioned with the lowest frequency – presumably because it would typically pertain to a limited number of languages. participants were also able to add their own reasons in an open-ended sub-question. additional reasons mentioned included (1) wanting to learn additional languages (mentioned six times), (2) that the particular languages would be useful for vocational and volunteer activities that participants were involved in or wanted to get involved in (mentioned five times), including acting as a chairman for a disability organisation, co-presenting workshops and preaching at church and (3) that it would facilitate understanding by specific people or groups (mentioned three times), namely personal assistants, friends and african people in general. one participant mentioned that, by being able to communicate in afrikaans, she could ‘accommodate’ people at work whose home language was afrikaans, even though they all understood english. participants were asked to select, from a list of four options, barriers that prevented them from currently using the desired languages at all or as much as they wanted to. they could also add additional reasons on open-ended sub-questions. the results are reported in figure 3. figure 3: frequency with which specific barriers prevented access to different languages. lack of access to that language through an sgd was mentioned most frequently, followed by lack of text prediction in the language, lack of pre-stored words or phrases on an aac system in that language and inadequate spelling skills. additional barriers mentioned included poor understanding in the desired language (mentioned four times). four participants did not want increased or additional access to languages. two of these were from english-speaking backgrounds and used sgds with english synthetic voices, as well as orthography-based methods to communicate in afrikaans. the two other participants relied mostly on speech, but also used orthography-based methods to communicate. discussion outline of the results from the data, it is clear that all participants could understand more than one language, and were exposed to multiple languages within their everyday activities. this is unsurprising given the multilingual south african context (coetzee-van rooy 2012). however, their expressive abilities did not mirror the extent of multilingualism exhibited in their comprehension and context. while this may be a general trend amongst persons in multilingual contexts, participants in this study seem to have faced challenges with access to multiple languages because of limitations in the communication methods at their disposal. particularly, more than half of the participants from non-english backgrounds (54%) did not have access to their home language via orthography-based methods of communication or picture symbol-based aac systems. similarly, what may be regarded as traditional forms of aided aac (communication boards or books, alphabet boards and sgds) mostly did not give the participants access to more than one language. limited literacy skills in some of the languages they understood seemed to pose another barrier to their ability to express themselves in multiple languages. these results confirm that access to multiple languages for persons using aac remains a challenge, as suggested in other qualitative investigations (huer et al. 2001; pickl 2011; singh et al. 2017). most participants expressed a desire to use additional languages or increase their use of the languages they were already using. similar to the respondents without disabilities in the study by coetzee-van rooy (2016), adults who used aac in the current study saw value in being able to express themselves in multiple languages, and offered mutual understanding as the most important reason. group cohesion or identity was another important reason mentioned by participants in the current study, and corresponds to some degree with the theme of social cohesion identified by coetzee-van rooy (2016). many participants also viewed their ability to express themselves in certain languages as part of their identity, affirming the link between language and identity (bristowe et al. 2014; mckinney 2013; ndlangamandla 2010). regarding barriers to the use of various languages, these related both to the lack of language-specific options available on aided aac and also to their own literacy skills. the latter corroborates the findings regarding their self-reported skills in reading and writing – these were generally poorer than spoken language comprehension. for participants from non-english backgrounds, this discrepancy was greater for the home language than for english. there may be various reasons. for some participants, the condition that they were diagnosed with or concomitant conditions such as intellectual disability may have complicated the acquisition or re-acquisition of literacy skills. however, it is often difficult to disentangle the effects of inherent capacity from environmental barriers, such as an impoverished home literacy environment, limited or no access to education, limited expectations by caregivers and teachers and no or poor literacy instruction in school (human rights watch 2015; sturm & clendon 2004). overall, south africa does not fare well in literacy education at school level, as revealed by the results of the recent progress in international reading and literacy study (pirls, howie et al. 2017). although adult literacy rates are reported to be 94% (statistics south africa 2017), such statistics have been criticised as misleading because of the challenge in measuring literacy by level of education (aitchison & harley 2006; pretorius 2013). most participants had at least a level of secondary school education, yet literacy instruction is not always prioritised for learners with disabilities (human rights watch 2015). more importantly maybe, the language of instruction in most south african schools is english from the fourth grade onwards (department of basic education 2011), thereby favouring english rather than home language literacy skill development. african home languages remain languages that are mainly spoken, rather than written (coetzee-van rooy 2012). providing their children with english rather than home language literacy instruction has also been reported to be a conscious choice of south african caregivers, in view of limited options of sgds with tts synthesis available for other languages (tönsing et al. 2018; van niekerk & tönsing 2015). a lack of literacy skills in the home language and other languages that they understand may have significant consequences for persons in need of aac. for many, literacy constitutes an effective method for linguistic expression, allowing them unrestricted access to express their thoughts and opinions in a way that is understandable to multiple partners, especially if they also have access to an sgd with tts in the appropriate languages (light & mcnaughton 2013). those with limited literacy skills may need to rely on unaided methods that typically do not allow linguistic expression, or on their residual speech, which may require a significant amount of guessing and interpretation by partners, and may only be effective when partners are very familiar with the person (dowden 1997). both these methods would severely restrict communication access. alternatively, aided aac systems that do not require literacy skills (such as those based on picture symbols) may be used. however, if such systems are required to give access to anything remotely approaching the expressive power of spoken or written language, they typically require aacand language-specific expertise to design, individualise and maintain, as a great number of words, concepts and possibly also grammatical markers need to be organised and stored to allow the generation of meaningful novel sentences (light & mcnaughton 2012; thistle & wilkinson 2013). practical implications improved access to expression in multiple languages for south africans with severe communication disabilities needs to be addressed on a number of levels. firstly, it is clear that communication technologies and specifically aac technologies should be designed in such a way as to allow a person to express themselves in multiple languages. text prediction in south african languages other than english, for example, may assist those with limited literacy skills (herold, alant & bornman 2008). text-to-speech synthesis in various south african languages available across multiple operating systems and integrated into specific aac applications could go a long way in giving many south africans with severe communication disabilities ‘a voice’ (schlünz et al. 2017). the ever-increasing availability of portable and specifically mobile technology has put potential aac solutions into the hands of many who could previously not obtain them (mcnaughton & light 2013), although physical access to these devices may require additional adaptations (bornman et al. 2016). however, unless aac applications are available that are able to truly meet communication needs in various contexts (e.g. talking to the family, friends, neighbours and other community members), their use will remain limited. in this regard, south african multilingual aac systems that do not require literacy skills need to be developed – both for children who are not yet literate but also for adults who may never have had the opportunity to become fully literate in one or more of the languages they understand. there is as yet no consensus in the aac field as to ‘the best’ way of designing such systems, and arguably, the diversity of persons in need of aac precludes the discovery of one such method. a knowledge of both language structure and also of the person’s unique communication needs and categorisation preferences is needed to select and organise vocabulary for an aac system (baker & chang 2006; light & drager 2007). the experience of south african aac service providers (tönsing et al. 2018) as well as comparisons between english and isizulu core vocabulary (most frequently used vocabulary as determined from transcriptions of natural conversations) (mngomezulu 2017) confirm the limitations of translation of english systems into other languages – especially into those with a different linguistic typology. continued collaboration between the main stakeholders (i.e. persons in need of aac and their families), service providers, linguists and human language technology specialists could assist in developing various aac system templates or user profiles that can then be adjusted and customised for individuals. studies are then also needed to determine effective ways of implementing such systems in a variety of contexts. furthermore, the results once again underline the need to interrogate literacy teaching practices in the south african education system as suggested by howie et al. (2017). the pirls has been criticised for excluding students with disabilities, thereby maintaining ‘the oppression of low expectation’ (schuelka 2013:216). we would suggest that learners with disabilities be urgently added to the groups of children identified by howie et al. (2017) as having a high risk for poor literacy outcomes in south africa. the choices regarding language of instruction (and, by implication, choices about literacy learning in different languages) in the basic education system made by parents and school governance bodies remain challenging and fraught with controversies (de klerk 2002a, 2002b). we would urge educators, parents and interventionists to consider long-term consequences specifically for learners who require aac. literacy learning opportunities for adults who would like to gain literacy skills in one or more languages should also be further investigated, as suggested by martin and murray (2011). the right to communicate using different languages may need to be recognised more formally in aac practice guidelines. although the right to communicate is pertinently upheld in the aac community (e.g. the communication bill of rights, cf. brady et al. 2016), the rights of persons using aac to express themselves in languages of their choosing seem not to have received equal attention. limitations this exploratory study has a number of limitations. the sample was small, and was recruited via an email list and an empowerment programme. the use of an english questionnaire biased the sample of participants towards those with literacy and english language skills, further limiting the generalisability of the results. the sample proportionally over-represented participants from english or afrikaans language backgrounds. both resource limitations and the estimated unlikelihood of access to aac services for persons who were not reached via these recruitment methods precluded us from using more comprehensive sampling methods. the persisting and widening economic divide which continues along racial lines, as well as lack of access to formal education and aac service delivery in languages other than english (kathard et al. 2011) still leaves a large proportion of persons with severe communication disabilities underserved, with no access to appropriate intervention. multiple methods of collecting the data were used in the study, and these may have had an influence on the results. qualitatively, it seemed that there were no differences in the number of inconsistencies or missing data when comparing the questionnaires received via fax or electronically to those administered in a face-to-face interview. because of the fact that the questionnaire targeted multiple manifest variables that were not related to a few underlying latent constructs, statistical comparisons between data received via the various methods were not carried out. two participants with a limited understanding of english were included in the study, and the questions were translated into their home language by a trained research assistant and a personal assistant, respectively. the personal assistant worked as a receptionist and assistant at a clinic for children with disabilities and their families based at a provincial hospital and was experienced in english–setswana translation as part of her work. however, the informal translation procedures used remain a significant limitation. social desirability effects are also typically a limitation of survey designs, and may have been exacerbated by the fact that many questionnaires were administered as interviews led by research assistants, who were familiar with the participants through their involvement in the communication empowerment programme. although the administration of questionnaires with assistance from research assistants and others facilitated access to the study for many participants (e.g. those who would have found writing or typing to complete the whole questionnaire independently too physically tiring), their involvement also poses a risk to fidelity, as they may have added their own interpretations to the participants’ answers. all but five respondents were personally known to the first author, posing a further risk to social desirability effects. the perspectives of the researchers on multilingual issues in aac were not known to participants, and it was emphasised in the information letter that the participants’ own views were sought, without there being correct or incorrect answers. participants in the empowerment programme were also assured that the way in which they answered would not in any way influence their future involvement in the programme. collecting additional information on the communication skills and physical abilities through formal measures such as the functional communication classification system (barty, caynes & johnston 2016), the manual ability classification system (eliasson et al. 2006) or the gross motor functional classification system (palisano et al. 2008) would have provided a more comprehensive picture of the participants and their abilities. conclusions the findings from this exploratory study suggest that south african adults using aac understand multiple spoken languages but face limitations in their ability to express themselves in multiple languages using aac. these limitations seemed related both to a lack of appropriate aac systems (e.g. a lack of tts in african languages other than english), as well as the adults’ limited literacy skills in some of the languages they understood. most adults desired additional or increased access to expression in various languages. particularly participants from non-english backgrounds desired access or increased access to their home language. appropriate multilingual aac systems and aac intervention are therefore urgently required. appropriate literacy learning opportunities for both adults and children who need or use aac also need to be created, as literacy skills can give access to autonomous communication. acknowledgements the authors would like to thank all the participants and research assistants for their valuable contribution. competing interests the authors declare that they have no financial or personal relationships that may 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dynavox family.www.mayer-johnson.com 3. symbolstix are a product of n2y, www.n2y.com 4. widgit symbols are a product of widgit software, www.widgit.com 5. minspeak® is a product of semantic compaction systems, www.minspeak.com abstract background methods findings discussion acknowledgements references about the author(s) maria zuurmond international centre for evidence in disability, london school of hygiene & tropical medicine (lshtm), london, uk velma nyapera kenya red cross society, nairobi, kenya victoria mwenda kenya red cross society, nairobi, kenya james kisia kenya red cross society, nairobi, kenya hilary rono london school of hygiene and tropical medicine, and opthalmologist, kitale, kenya jennifer palmer department of infectious diseases epidemiology, london school of hygiene & tropical medicine, uk centre of african studies, school of political & social sciences, university of edinburgh, london, uk citation zuurmond, m., nyapera, v., mwenda, v., kisia, j., rono, h. & palmer, j., 2016, ‘childhood disability in turkana, kenya: understanding how caregivers carers cope in a complex humanitarian setting’, african journal of disability 5(1), a277. http://dx.doi.org/10.4102/ajod.v5i1.277 original research childhood disability in turkana, kenya: understanding how carers cope in a complex humanitarian setting maria zuurmond, velma nyapera, victoria mwenda, james kisia, hilary rono, jennifer palmer received: 21 apr. 2016; accepted: 01 july 2016; published: 29 sept. 2016 copyright: © 2016. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention. methods: based on in-depth interviews with 31 families, key informants and focus group discussions in turkana, kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation. results: the challenging environmental and social conditions of turkana magnified not only the impact of impairment on children, but also the burden of caregiving. the remoteness of turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. in a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families. conclusion: the needs of children with disabilities and their carers in turkana are not being met by either community social support systems or humanitarian aid programmes. there is an urgent need to mainstream disability into turkana services and programmes. background disability in humanitarian crises the world report on disability estimates that 15% of the world’s population experience some form of disability, and an estimated 93 million children aged 0–14 years are living with a moderate or severe disability. the majority are in lowand middle-income countries (lmics; world health organization 2011). the same report highlights that conflict and natural disasters can both cause disabilities and make people with existing disabilities even more vulnerable. humanitarian crises are social and material environments which may exacerbate the vulnerability of people with disabilities because of a breakdown in social services (medical and education), a reduction in income support for food and other basic necessities, diminished mobility and opportunities for migration and the loss of carers (kett & van ommeren 2009; reilly 2010). article 11 of the convention on the rights of persons with disabilities emphasises measures to protect the safety of people with disabilities during armed conflict and natural disasters (un 2006). additionally, a number of guidelines exist to support the mainstreaming of disability in humanitarian interventions (handicap international 2005; sphere 2011). within a low-resource context, community-based rehabilitation (cbr) is also an important recommended strategy for rehabilitation, poverty reduction and the social inclusion of people with disabilities that is relevant to humanitarian contexts. this approach recognises the central role of the family and their communities, as well as relevant government and non-governmental organisations, in reducing disability (world health organization 2010). humanitarian crises such as those caused by armed conflict and natural disaster inevitably create new social processes, not all of which lead to harm. crises may reinforce a community’s sense of identity and systems of coping (hodgson 2000) or prompt exposure to global humanitarianism and associated liberal systems and concepts (grabska 2014). indeed, people with disabilities in some highly managed settings (such as refugee camps) experience access to humanitarian programming as liberating, not only because such programmes meet everyday accessibility needs such as by providing latrines that are easy to use, but also by helping transform displaced populations’ attitudes towards disability (mirza 2013). as in non-crisis affected contexts, disabled children and their families in humanitarian and post-humanitarian settings may face multiple barriers to social inclusion. these barriers include increased caregiving duties, which prevent participation in economic activities, and poor informational access to or discriminatory exclusion from services that mitigate vulnerabilities (miles & medi 1994; ngo et al. 2012). the needs for informal care and cbr in crisis and post-crisis settings also likely impact women more than men (berghs 2015). there is, however, a need for better understanding of the lived experiences of adults and children with disabilities during humanitarian crises; particularly, little is known about family coping strategies in such settings. coping in a complex humanitarian context in turkana turkana county, in north-west kenya, has been classified at various points over the last several decades as suffering from a complex humanitarian crisis because of multiple causes of vulnerability which compound each other. the climate is arid and suited for livestock production, which supports 60% of the population (boulton 2012), but is subject to periodic drought. rains are not only erratic with frequent total failure, but they also produce flash flooding. within kenya, turkana is the largest county geographically and one of the most historically under-developed; people who live there suffer from some of the poorest schools, roads and health services in the country, a situation which has been unable to reverse by long-standing (but often poorly funded) government and humanitarian interventions (broch-due & sanders 1999). health and rehabilitation services are limited to the county hospital and a small, fragmented network of faith-based clinics and hospitals. poverty levels are 20% above the national average with per capita livestock wealth declining and dependence on food aid increasing (kenya national bureau of statistics 2014). the large majority (78–94%) of households in turkana experience problems accessing food (ochola 2011). in recent years, up to 15% of the population of turkana has been served by united nations ‘food assistance for assets’ programmes (food in return for work on projects that increase a community’s resiliency), and the general acute malnutrition rate among children has hovered at around 15%, the threshold between a ‘serious’ and ‘critical’ nutritional emergency (office for the coordination of humanitarian affairs 2013). with the proliferation of small arms seen over the last several decades, livestock raiding also contributes to famine, inter-communal violence and displacement and harms social systems for coping (hendrickson, armon & mearns 1998). consequently, in turkana, as in other pastoralist areas of africa, low-level, chronic violence and the politics of marginalisation reproduce one another (pike et al. 2010). in such a setting, pastoral mobility, including crisis-induced displacement, largely configures turkana people’s access to food, social services and income (pike et al. 2010). turkana social institutions (such as the maintenance of land rights and systems of livestock redistribution during crisis) remain key for people to manage the environmental precarity of living here (mccabe 1990), but they tend to exclude families living in towns, making them more dependent on cash economies or aid (broch-due & sanders 1999). as carers, women play a key role in upholding these social institutions which contribute to community resilience. a good example of the instrumentality of pastoralist women in northern kenya is in the area of nutrition (pike et al. 2010). access to milk from livestock is a particularly important determinant of nutrition and therefore health. when crisis forces men to move with cattle, this puts women and children at a nutritional disadvantage. to counter such vulnerability, pastoralist women therefore practise nutritional buffering of children’s diet in an age-related pattern of communal moral responsibility; older women buffer younger mothers and all women forego food when children are hungry. women in the turkana are also more likely to be in a polygamous union (21%) compared with the national average of 10.2% kenyan average (kenya national bureau of statistics 2010), and crisis can put a particular strain on the resources of polygamous families, with family breakdown (wawire 2003). the results of a recent study of childhood disability and malnutrition in turkana are therefore troubling, which found that children with disabilities are more likely to be malnourished than their neighbours and even their siblings (kuper et al. 2015). this vulnerability could reflect difficulties that carers of children with disabilities have in accessing traditional social support systems and/or humanitarian interventions. as has been shown in post-conflict mozambique (miles & medi 1994), for families already stressed from the effects of war, poverty and drought, having a disabled child can exacerbate an already desperate situation, with the family invariably becoming poorer. in this study, we present a picture of the lived experiences of carers of children with disabilities living in an ongoing, complex humanitarian crisis in turkana, kenya. we use the world health organization’s international classification of functioning, disability and health (icf), a biopsychosocial model of disability that synthesises a medical and social model of disability. this framework outlines the dynamic relationship between the impairment or health condition with activity limitations and participation restrictions, and the mediating role that environmental and personal factors can play (world health organization 2001). we pay particular attention to carers’ daily needs, priorities and coping strategies as well as the social processes which permit or limit opportunities for them to access services and participate in community life. methods study setting and sample this research was conducted in september 2012 and may 2013 in lodwar, the county’s largest town, and surrounding areas of turkana central district (now a sub-county) in collaboration with the kenya red cross society (krcs). an initial scoping visit was undertaken to map disability-related services and aid programmes in turkana county (september 2012). turkana central district was selected for this study and for a later survey of childhood disability prevalence for several criteria: it supports a range of livelihood types (pastoralism, fishing, agriculture, small businesses), was relatively safe and krcs was present in the district to facilitate access to families caring for children with disabilities. the survey, conducted jul–aug 2013, estimated a minimum prevalence of moderate-to-severe disability in children at 0.75% (0.66–0.83%), with the true prevalence likely to be much higher (kuper et al. 2015). physical impairment such as cerebral palsy, rickets and muscular dystrophy was the most prevalent form of disability followed by epilepsy, visual, hearing and intellectual impairment; congenital causes of the disability were most common. the majority of children (85%) had never received any form of rehabilitative service such as therapy/exercises, assistive devices, surgery or occupational advice. for our qualitative interviews, a list of children with disabilities living in the turkana district aged 10 years and younger was collated from existing krcs disability project data; additional information on demographics and the type of impairment was provided by krcs cbr workers and local community health workers. children were purposively sampled to cover a range of ages (1–5 years and 6–10 years), genders and impairments (physical, visual, hearing and intellectual). as the research was conducted during the rainy season some adjustment had to be made to the final choice of villages to take into account accessibility for the survey team and resulted in the exclusion of the most isolated and inaccessible villages. cattle-rustling and tribal conflicts also prevented access to some districts at this time. carers were interviewed from 31 households, providing information on a total of 36 children with disabilities, of which 25 were boys and 11 girls. eight children were in school. of the carers interviewed, 19 were mothers, 3 grandmothers, 3 grandmothers and mothers (combined), 2 siblings, 4 fathers and 1 mother and father (combined). only the men did not self-identify as the primary carer. a quarter of the families interviewed had recently migrated: two were pastoralists who regularly moved with livestock, five were displaced by flooding, drought or cattle raiding. families in the sample were drawn from 23 villages, in three divisions, four locations and seven sub-locations. to contextualise information collected from carer interviews, interviews were conducted with 16 key informants including village elders, hospitaland clinic-based staff, community health workers and teachers. furthermore, two focus groups were conducted in two sites (where unplanned groups of carers had congregated when they heard about the research), and individuals were selected from these groups for one-to-one interviews (table 1). table 1: sample of children (n = 36). data collection and analysis interviews were semi-structured and conducted by two researchers (m.z. and v.n.) through translation between turkana or kiswahili and english. at the end of each day the project team met to review all interviews, to discuss and agree on key emerging issues and to identify any gaps that necessitated further exploration and additional questions in follow-up interviews. detailed notes were taken during all interviews, and all interviews were also recorded and transcribed into english. most interviews with carers took place at the child’s home, unless roads were impassable, in which case interviews were undertaken at a nearby health centre. given that most family dwellings were very small, it was often impossible to have privacy for the one-to-one interviews, and some interviews were inevitably conducted with other family members present. interviews covered the following areas: beliefs and attitudes about the child’s condition, the impact of caring for a child with a disability, nutrition and feeding practices and factors which impacted upon children’s access to services (health, education and humanitarian programmes including nutrition programmes). interviews with key informants and focus group discussions focused on the availability of services, referral procedures and barriers to inclusion of children with disabilities in social systems. both interviewers separately identified a list of key themes and sub-themes through an iterative process, and these were then discussed, refined and cross-checked for consistency to provide an overall thematic coding framework for systematic analysis by m.z. after fieldwork, by using nvivo 10 software (green & thorogood 2009). ethical consideration this project received ethical approval from moi teaching hospital in kenya, and from the london school of hygiene and tropical medicine in the uk. families were contacted and visited by local krcs volunteers in advance of the interviews to provide clear verbal and written information about the research, and signed consent was obtained for all interviews. one component of the ethics protocol was for referrals to be supported by the krcs team following the interviews. quotes from respondents have been anonymised to protect their privacy. findings the gendered impact of caregiving and livelihoods in a context of widespread poverty, scarcity of services and poor infrastructure, it was evident from all interviews that having a child with a disability impacted the whole family, generating specific challenges related to caring, income generation and the psychosocial health of carers. impacts were most notable on women, who are the primary carers in families in turkana. mothers, grandmothers and female siblings typically cared for the children in our sample. in the larger survey, children with disabilities were significantly more likely than neighbour controls to have a female head of household, and half of the households we interviewed were single parent, female-headed. reasons given for a father’s absence, or for spending a long period away from the home, commonly involved stigma related to the child’s disability, with very little, if any, family support provided by the father following the birth of a child with a disability. these reactions compounded the gendered burden of caregiving and the poverty of the family. caregiving arrangements for ‘p’ are illustrative of the complexity of these issues. p is a 10-year-old boy who was intellectually impaired and had epilepsy; he lived with his mother and six siblings, and his oldest sister had been taken out of school to help care for p. his illness began when he was about 6 years old; his family sought treatment for him at the local health centre and spent a considerable amount of money on seeking a cure from a traditional healer. his father subsequently left the family and stopped providing any support. the family reported they were not in receipt of any community or humanitarian support and the psychosocial impact of this on p’s mother was clear: ‘i think someone bewitched the father of the chid, and then the spell went to the child.… they told me [at the health centre] to take the child home and seek the help of the traditional healer … my husband and i spent a lot of money.… when my son’s condition worsened i felt desperate, i lost hope, and i know there is nothing i can do to heal my son.’ the impact of increased caregiving responsibilities on being able to pursue livelihood activities was a key issue for families, and particularly in, but not exclusive to, female-headed households. a mother from another single female-headed household described the frustration she felt of balancing her caregiving roles with income-generating activities: ‘i am not able to do any work here all day. i have to carry the child all through the day. i am not able to make as many mats as other women make. i only make one mat every month while other women make even 5 mats. sometimes i am not able to make any mats at all.’ (mother of 6-year-old boy with cerebral palsy) the need to work often resulted in a child with a disability being left on their own for several hours during the day. one grandmother in a peri-urban context described how her grandson was often left on his own under a tree. the child had severe cerebral palsy and was immobile, without even an assistive device to sit on, and without support from close neighbours: ‘when all the children have gone to school he is left alone. the mother might be in town and i might be collecting firewood or on the farm’. for displaced families, the absence of support from extended family also accentuated the challenge of combining caregiving and livelihoods. one mother of an 8-year-old boy who had down’s syndrome and was visually impaired described moving to a new village after her husband had been killed in a livestock raid. although neighbours offered occasional support, working was difficult with no family nearby to help: ‘he is with me throughout the day. it is so difficult … when i have to work i sometimes lock him in the compound, and sometimes i take him with me [to collect firewood]. when he is locked inside alone he runs around and he cries. sometimes neighbours will come and comfort him and he will sleep.’ (mother of an 8-year-old boy with down’s syndrome) beliefs about the causes of disability beliefs and attitudes linking disability and misfortune influenced parents’ decisions to engage with services and seek treatment, as well as the type of treatment sought. carers had very low levels of biomedical understanding about their child’s impairment, and treatment was most commonly sought from traditional healers. in the small number of instances where families had visited a hospital or clinic, there was still considerable confusion about their child’s condition, the cause and options for treatment. while a very small group of parents provided a biomedical rationale for the disability, some carers suspected witchcraft as in the case of p above; ‘god’s will’ and the intervention of ancestors were also common justifications. moreover, many families held pluralistic views on the causes of the disability, whereby many possible reasons were considered simultaneously. non-biomedical explanations cast disability as a misfortune typically interpreted in the context of problematic interpersonal relationships germane to the sociopolitics of the turkana region, as in the following explanation: ‘some say that it is god who is annoyed with them. others say that their forefathers were disabled, and it is a replica of that [interviewer: can you explain more?] in the past people went for raid and in the process of raiding they might have killed a disabled person, and so god now makes sure that they have got that disability.’ (mother of a 7-year-old girl with a hearing impairment) as shown by others, intervention by ancestors, god and witches/wizards is a common rationale for childhood illness and disability in turkana (shelley 1985). in communities close to lake turkana, poor natural environmental conditions such as salty water or soil were also commonly believed capable of causing disability. yet, despite some carers’ associations between health problems and the lake, the lake remained an essential source of livelihood. disability therefore appeared to be interpreted as an unfortunate trade-off and inevitability of living near the lake, and commonly no diagnosis or treatment was sought. as one single parent mother explained, in relation to her daughter’s condition: ‘people say the salty water from the lake and the sandy soil makes the bones weak, especially because it is difficult to walk in sand. some people in the community call it ‘agule’ [polio], others call it ‘lotoro’ a condition caused by the water in the environment and soil … i have been considering taking her to the hospital but i have no faith that anything can be done medically about this disease; it is caused by the environment.’ (mother of a 5-year-old child with a physical impairment) stigma and the absence of support stigma and shame associated with having a child with a disability was pervasive and influenced how children were cared for, the wider support available from the community, and acted as a key barrier to accessing services and aid. one mother, whose son of 8 years was completely blind and spent most of his day inside the house, illustrated this profoundly, saying ‘i do not think ‘s’ is alive. i am just taking care of him until his final death’. children with disabilities were seen as a burden because they could not help with household chores or work with the livestock, all of which were important roles in this rural and pastoralist setting: ‘i do not think that this child is of benefit to the family in any way. she just remains to be counted as part of my household. she can’t get married or help with household chores.’ (mother of a 6-yearold girl with a physical and intellectual impairment) stigma also prevented children from accessing services. one grandmother explained how she had never taken her 10-year old grandchild with multiple disabilities out of the compound to seek help or to register him for any type of aid project: ‘my child has not been part of any food programme, but we haven’t exposed him to any of these programmes. [interviewer: why?] i was ashamed to take him out’. while some parents commented that their family or community did not overtly stigmatise their child, and some benefited from material support, they nevertheless felt shame in the absence of family or community social support. for instance, one single mother highlighted her pain from the fact that her sister refused to carry her child: ‘i feel bad having to carry the child around by myself and no one is there to help me. my sister does not want to help me carry my child. she provides for us and helps me a lot with money and food. but she doesn’t want to associate with my child because he is disabled. she does not carry him at all. that is not all; his father refused to take responsibility over his child because the child is disabled.’ (mother, with son of 3 years with cerebral palsy) key informants talked about the absence of children with disabilities in their services because the children are hidden. one village chief, discussing this point, argued that while disabled children in his village were not necessarily hidden, they were largely kept at home in the absence of clear support or knowledge of what treatment or rehabilitation might offer: ‘i was surprised when kenya red cross society brought all the disabled together in one point. i was surprised how many i saw. they are not being hidden, but they are kept at home unless they know that something can be done with their situation.’ caregiving in an arid rural environment the limited mobility of children was among the greatest challenges for carers in the arid turkana environment where carers must carry disabled children while covering long distances to collect firewood and water. the absence of assistive devices as well as the difficult terrain for a wheelchair are additional challenges. toileting and the personal care of children, particularly when they were incontinent, was also a major problem given the absence of latrines and huge difficulties around access to water. this challenge was highlighted by key informants and carers: ‘i am confined to caring for him all day. … you know, once somebody is lame or disabled and the family has no way to solve the problem, it becomes a desperate situation … i am the one who cleans him up when he passes stool. i also take him out to pass his stool. this is very stressful but i have no way out.’ (mother of son of 10 years with epilepsy and intellectual impairment) in one village, this problem was exacerbated when the communal pump was damaged following flash flooding, and the mother described needing to resort to a 4-h round trip to dig a shallow well at the nearest river bed, which is of course a challenge for all families, but it was magnified for her when carrying an older, heavy child with a disability. while some carers elected to leave children behind during water collection, others worried about the consequences of doing so, as one mother of a daughter with multiple disabilities explained: ‘for me being with her most of the day is very difficult for me to bear. but i fear that if i leave her alone she may fall in the fire and this thought traumatises me, so i am forced to stay and care for her all day.’ long distances to access healthcare was also a particular challenge for a mother recently displaced by flooding to a remote area. although her 8-year-old daughter with epilepsy and an intellectual impairment was ill almost every month, it was rare that she could leave the rest of her duties to carry her daughter the 4 km to the nearest dispensary. the difficult environmental conditions for all families in turkana were furthermore raised by carers as a reason why other families may be reluctant to share the burden of caring. as described by this father of a boy with hydrocephalus and polio, ‘some community members support the children whenever they can. … the majority, however, do not support them at all. in the community everyone fends for himself’. the challenges of accessing services there were few projects in turkana designed to serve people with disabilities (office for the coordination of humanitarian affairs 2013) and limited government or faith-based rehabilitation services even within the main county hospital, making it difficult for families to access assistive devices. the limited dedicated services is within a wider context of limited health service provision in turkana, for example 19 nurses per 100 000 population compared to 55 nationally (government of kenya 2014). with the exception of eye health services, key informants highlighted that referral processes for treatment or rehabilitation of impairments were complex or absent in turkana. there was a lack of information about the limited rehabilitation services which were available, and a wider lack of knowledge about disability amongst community-level healthcare professionals (merlin 2012). the large distances, the remoteness of villages and very limited transport meant there were very substantial opportunity costs, in the form of time lost away from work, for families who chose to seek out rehabilitation services. ‘we had to stay in lokichar for a month for the child to be assessed and given treatment … we are business people; our long stay in lokichar made our business not flourish. we also lost time and money in seeking treatment.’ (father of a girl with a physical disability) almost every carer identified costs as a barrier to accessing healthcare, and sometimes important assets such as livestock were sold off to pay for ongoing treatment or the constant quest for a ‘cure’ for the disability, which included use of traditional healers. the impact on families of paying for services could be substantial because in many cases the carers commonly described their child with a disability as being more frequently ill, compared with siblings: ‘we are unable to save any money for the future because almost everything is spent on the treatment of our child.… you know when the child is well one can afford to save money for other things and for the children’s education.’ (father of 3-year-old boy with a physical impairment) in some families, the lack of income precluded seeking any health services, as explained by one single mother whose son was frequently ill: ‘if he is ill, i boil water and bathe him in water, but i have no money to take him to the health centre’. in terms of humanitarian aid programmes, there was also confusion and perceptions of unfairness around accessing nutrition programmes among parents a key need given that most families reported difficulties in providing one meal a day for all family members. school feeding programmes are a common nutrition intervention in turkana, for example, but most children with disabilities interviewed were not in school and were thus not able to benefit in the same way as their siblings. others were too young for school and yet were also not accessing food supplementation programmes, as one mother explained: ‘i have not received any help so far. we are still waiting for aid. my sister’s children however … [receive] maize and beans in school.’ (mother of a 3-year-old boy with cerebral palsy) likewise, parents faced major practical challenges accessing ‘food assistance for assets’ programmes and food distributions, as the following quotes illustrate: ‘there is a food-for-work programme within the area, but i’m not a beneficiary. there is no way i can leave the child and go to work.’ (mother of girl of 8 years with cerebral palsy) ‘i used to carry my child across the lake … where distribution of food used to take place. i would pay for a bicycle to transport the food to the lake shore, then put it on a boat and cross over. it is much easier for parents without children with special needs. for instance, my sister used to carry the food by herself, she didn’t need help [requiring her to pay for additional transport].’ (mother of boy of 5 years with a physical impairment) discussion this research sought to explore the lived experiences of families who care for children with disabilities in the complex humanitarian environment of turkana, with the overall aim of improving their inclusion in programming and policy. as described by the world health organization’s model of disability (world health organization 2001), this study highlights how the multifaceted humanitarian context in turkana magnifies the disabling impact of children’s impairment on them, and also on the carer burden, through a variety of environmental, social and cultural factors which compound the vulnerability of the family. our study also confirms many of the challenges faced by people with disabilities cited in the small but growing body of literature about disability in humanitarian contexts, which include the disruption of social support networks and dearth of supportive services (lange 2015; oosterhoff & kett 2014; scherrer 2015; tomlinson & abdi 2003). our study paints an often harrowing picture of the daily lives of children with disabilities and their families. arguably many families in turkana face extreme poverty, and access to basic healthcare for everyone is a challenge in pastoralist zones (pike et al. 2010; sheik-mohamed & velema 1999). poor roads, large distances, few services and limited transport affect everyone’s access to services; however, this problem is magnified for children with disabilities, who often need to be physically carried long distances, or complex transport arrangements need to be made. our findings mirror those of an australian study which describes the mobility restrictions of disability on top of the difficulties for dispersed populations to access services as a ‘double disadvantage’ (gething 1997). in the drought-stricken environment of turkana, water scarcity is a vital issue for everyone (london school of hygiene and tropical medicine 2013), but the challenges are augmented in a household with a child with a disability who may need to be carried for water collection and may have additional self-care needs. reviews of water and sanitation issues for persons with disabilities highlight the critical importance of these issues, yet they are often overlooked in programmes which are not disability inclusive (danquah 2014; groce et al. 2011). it is well recognised that family and community support networks are essential in the care of children with disabilities in many low-resource settings, in particular where there is a paucity of services (world health organization 2011), and yet in emergency contexts, family and social networks are often weakened or destroyed (oosterhoff & kett 2014). our findings emphasise the particular isolation of carers in this disability context and the limitations of community support mechanisms. fathers were absent in more than half of families, for example, and the stigma of having a disabled child was offered as a common explanation. when even women’s sisters would not touch a child with a disability to share the burden of carrying them during chores, this particularly heightened female carers’ sense of social isolation. although we could not investigate it in-depth, social isolation of women carers could also affect other crisis-related coping mechanisms, such as nutritional buffering. stigma is a complex phenomenon often linked to the cultural context and associating disability with witchcraft or supernatural intervention is pervasive in many contexts, including in turkana ( shelley 1985; van brakel 2014; world health organization 2011). in the specific region of lake turkana a recent environmental study highlighted reportedly high levels of skeletal ‘deformities’ linked to changing salinity levels, and a persistent local view that the deformation was a curse (avery 2013). this behaviour which normalises a state of ill health and long-term suffering because of structural inequalities can also be common among marginalised groups in the region (sundal 2009). however, there are few studies which have also explored the specific impact of stigma on carers and caregiving. in our study, such stigma limited not only carers’ access to support from extended families or communities, but also their access to government, ngo services and humanitarian programmes, which was because local social support is often needed to offset the opportunity costs involved in seeking formal services and programmes, such as providing care for children left behind whilst services are accessed or the costs of transportation when walking while carrying a heavy child is impossible. this isolation of carers, in turn, impacts on children’s access to healthcare and carers’ access to livelihood opportunities. several studies have indicated that children with disabilities in lmic settings are more likely to have problems with serious illnesses or malnutrition (groce et al. 2013; tompsett, yousafzai & filteau 1999; yousafzai, filteau, & wirz 2003). our qualitative study corroborates the findings of the prevalence survey in turkana which showed that children with disabilities were more malnourished but at the same time less likely to access feeding programmes (kuper et al. 2015). families in this setting also appear to face major challenges meeting the healthcare needs of their children with disabilities; limited service availability, a lack of information about rehabilitation service options and complex referral processes exacerbate this. the challenges of increased caregiving responsibilities on livelihoods in the context of hiv has been extensively described in the literature (opiyo, yamano, & jayne 2008), but there is limited comparable evidence within the disability literature, and what little there is typically limited to studies of adults with disabilities. in humanitarian contexts, food-for-work programmes are intended to benefit the whole community and particularly attempt to target the most vulnerable, and yet our study indicates that carers of children with disabilities are often excluded from such programmes. in conclusion, a multiplicity of factors compound the vulnerability of children with disabilities and their carers in the complex humanitarian context of turkana. our interviews illustrate that children and their carers in turkana are falling through the safety nets of both community social support systems as well as humanitarian aid programmes established to assist the most vulnerable; this emphasises the urgent need for improved mainstreaming of disability, as well as targeted approaches for inclusion, for example, in terms of how these children can be included in nutrition and food assistance programmes. the intersectionality of gender and disability also needs some consideration given the gendered nature of caregiving. for example, livelihoods programmes need to be more gender-sensitive and more actively inclusive of families with children with a disability who may be ‘invisible’ to authorities, health and humanitarian workers 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of turkana district in kenya. world health organization, 2001, world health organization. international classification of functioning, disability and health, viewed 16 august 2013, from http://www.who.int/classifications/icf/en/ world health organization, 2010, community-based rehabilitation: cbr guidelines, world health organization, geneva. world health organization, 2011, world report on disability, world health organisation, geneva. yousafzai, a.k., filteau, s. & wirz, s., 2003, ‘feeding difficulties in disabled children leads to malnutrition: experience in an indian slum’, british journal of nutrition 90, 1097–1106. http://dx.doi.org/10.1079/bjn2003991 abstract introduction literature review research method and design findings and discussions conclusion acknowledgements references about the author(s) nokuthula tinta department of consumer science, faculty of natural and agricultural sciences, university of the free state, bloemfontein, south africa hester steyn department of consumer science, faculty of natural and agricultural sciences, university of the free state, bloemfontein, south africa jana vermaas department of consumer science, faculty of natural and agricultural sciences, university of the free state, bloemfontein, south africa citation tinta, n., steyn, h. & vermaas, j., 2020, ‘barriers experienced by people with disabilities participating in income-generating activities. a case of a sheltered workshop in bloemfontein, south africa’, african journal of disability 9(0), a662. https://doi.org/10.4102/ajod.v9i0.662 original research barriers experienced by people with disabilities participating in income-generating activities. a case of a sheltered workshop in bloemfontein, south africa nokuthula tinta, hester steyn, jana vermaas received: 12 july 2019; accepted: 12 june 2020; published: 31 aug. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with disabilities often participate in income-generating activities (igas) in sheltered workshop in south africa. however, they face many barriers that limit their ability to participate effectively in economic activities hosted by the workshops. objectives: to illustrate the barriers that limit the participation of people with disabilities in igas in a sheltered workshop. method: a qualitative exploratory single case study was conducted in a sheltered workshop. eighteen participants, age 22 to 52 years with various disabilities were purposively sampled. observations and semi-structured interview guides were used to generate data. verbatim transcription was used after which content analysis was applied to identify ideas and concepts relating to barriers experienced by people with disabilities participating in igas. results: some of the barriers participants experienced included institutional barriers (ability to use working tools, inability to concentrate for long periods, lack of funds, language barriers, lack of motivation, activities that are not stimulating and lack of artistry skills) and attitudinal barriers (exclusion from decision making) these barriers had an adverse influence on their performance in igas. conclusion: the study found eight different barriers that existed in a sheltered workshop which limited the participation of the people with disabilities that attended the workshop. this information can be used to develop strategies to address each barrier and promote increased participation of the individual thereby improving their quality of life. keywords: people with disabilities; barriers; income generating activities; sheltered workshop; participation. introduction over 15% of the world’s population is made up of people with disabilities (world health organization & world bank [who & wb] 2011), and these people are often unemployed, live in poverty, and some may have no qualifications. south africa has a population of 57.73 million of which 2.9 million (7.5%) are recorded as living with a disability and experience difficulties in functioning and participating in economic activities (stats sa 2014). consequently, this has a negative impact on their lives. the south african government developed various policy frameworks and guidelines since 1994. these include the skills development act no. 97 of 1998 (republic of south africa 1998b), national skills development strategies (nsds, republic of south africa 2001, 2005, 2011), white paper on an integrated national disability strategy (inds, republic of south africa 1997b), code of good practice on the employment of people with disabilities (republic of south africa 2002), promotion of equality and prevention of unfair discrimination (pepuda, republic of south africa 2000), and the employment equity act 55 (eea, republic of south africa 1998a). these were developed to enable the successful inclusion of people with disabilities into mainstream society. these policies and frameworks aim to increase access and opportunities to ensure that all people can develop livelihoods that are sustainable. additionally, the policies deal with the challenges that limit the ability of people with disabilities to participate in society. they are also intended to address the needs of those people who were previously disadvantaged as well as marginalised groups like people with disabilities. despite these policies, guidelines and frameworks, it is argued that people with disabilities in a sheltered workshop (a setting in which people with disabilities receive services and training to develop work-related skills and behaviours, armstrong 2011) are faced with attitudinal, environmental and institutional barriers, which limit their ability to participate in economic activities effectively. research shows that people with disabilities in south africa face interacting barriers that limit life chances and their ability to participate in economic activities. these barriers include lack of accessible transport to reach the workplace, lack of skills training, lack of application and monitoring of the employment equity act and lack of funds (berthoud 2008; department of labour 2002; economic policy research institute [epri] 2001, 2004; moodley 1997; seirlis & swartz 2006). a study by momin (2004) reveals that people with disabilities suffer from various forms of barriers such as appropriate skills, lack of educational qualifications, discriminating attitude and inappropriate wages. literature also shows that different impairment characteristics, as well as the type of disability, also influence participation (berthoud 2008; jones & jones 2008; meager & higgins 2011). such barriers are over and above those faced by people without disabilities, and as a result, people with disabilities experience difficulty in accessing education or have lower educational achievement and are economically inactive (hoogeveen 2005; rischewski et al. 2008; mont & viet cuong 2011). this exclusion results in people with disabilities working in sheltered employment which, in south africa, is offered by the state or by private welfare organisations and self-help programmes, which are not sustainable in themselves. sheltered employment across europe is one of the most broadly used employment measures for people with disabilities (mallender et al. 2015). several studies have reported growth in sheltered workshop placement in germany and spain (flores et al. 2011; shima, zólyomi & zaidi 2008). however, little is known in south africa about the challenges people with disabilities who participate in income-generating activities (igas) experience. there is also a dearth of information on whether people with disabilities are being prepared for the open labour market. the objective of this paper was to illustrate the barriers that limit the participation of people with disabilities in igas in a sheltered workshop. literature review disability is the broad term that covers impairments such as movement impediment and limitation to participate. these impairments restrict the body to function appropriately or affect the structure of the body. disability, therefore, limits individuals from performing activities or participating in day-to-day life situations (who & wb 2011). in south africa, people with disabilities are classified into six categories based on the degree of difficulty they experience. the categories used for the 2011 census are seeing, hearing, communication, physical, mental and difficulty in self-care (stats sa 2014). based on the disability types, one can contend that there is a range of particular needs that should be met to ensure that the productivity of individuals is maximised for each disability type. the social model of disability of gottlieb, myhill and blanck (2010), which is increasingly recognised by various researchers (opoku et al. 2017; thibedeau boyd & davis 2016; walsh, lydon & healy 2014), acknowledges that disability is socially constructed. this means that the cause of the ‘problem’ is placed on society rather than on the individual with impairment. conversely, the medical model sees the physical limitation as the primary cause of disadvantage for a disabled person. the social model does not deny that a person with a disability might have functional limitations caused by the impairment. rather the model evaluates the socio-economic environment as well as the impact of the barriers on the full participation and inclusion of people with disabilities as part of mainstream society. the social model recognises people with disabilities as equal citizens with full political, social, economic and human rights. this model also emphasises the need for attitude changes in society with the provision of accessible services and activities, and the mainstreaming of disability to ensure inclusivity and equality (republic of south africa 2017). the model further gives prominence to people with disabilities to participate actively in transformation processes to improve the quality of their lives. unlike the medical model, which disseminates sheltered employment opportunities that are not part of the open labour market, the social model has had positive outcomes for employment in countries like the united states, canada and australia (gottlieb et al. 2010). in the view of shapiro (1994), this has helped change employers’ perceptions of people with disabilities. people with disabilities may face environmental barriers whereby physical environment, transportation, technology, informational sources and buildings marginalise them. for people with disabilities to participate fully in community life, access to these environmental surroundings and facilities is essential (braithwaite & mont 2008). metu (2011) studied factors influencing the performance of igas among persons with physical disabilities. the author found that the majority had high levels of physical and environmental barriers affecting their mobility and subsequently, their choice of business and ability to run it. yeo and moore (2003) further point out that the scarcity of information transcribed into braille as well as the lack of sign language interpretation for those with sensory impairments is among the barriers that keep people with disabilities from participating fully. barriers may occur in institutions. institutional barriers for people with disabilities exist when they are discriminated against in various ways or fail to take full account of their needs (barnes 1991). research shows that there is insufficient learning material to teach children with disabilities in south africa (fish-hodgson & khumalo 2015). barriers may also be attitudinal. misconceptions about the ability of people with disabilities to perform jobs are one of the main reasons for their exclusion from opportunities (shier, graham & jones 2009). this may come from the belief that people with disabilities are less productive than their non-disabled equivalents. people with disabilities are also regarded as not being able to contribute anything, are waiting to be helped and are dependent on others (uromi & mazangwa 2015). discrimination against people with disabilities often stems from a lack of knowledge and negative attitude. naami (2014) states that a person with disabilities experiences discrimination daily in all spheres of life, because of ignorance and misconceptions about their capabilities. marumoagae (2012) points out that discrimination against people with disabilities is one of the worst social injustices that society has not been able to overcome. some disabilities can cause more severe discrimination than others. baldwin and johnson (1994), as well as baldwin and marcus (2006), point out that different impairments can cause different degrees of prejudgement, with the most substantial prejudice exhibited towards people with mental health conditions. the barriers discussed also impose severe limits on life chances for specific groups of people with disabilities. the eea (republic of south africa 1998a) states that it is the responsibility of employers to accommodate people with disabilities. however, the eea (republic of south africa 1998a) does not provide a clear definition of what constitutes a reasonable accommodation. this is most likely because the type of accommodation and related processes depend on the nature of the disability. the code of good practice provides certain instances of what can be considered reasonable accommodation (republic of south africa 2002). these include adapting facilities, adapting equipment or acquiring new equipment, re-organising work changing training and assessment materials and systems, restructuring jobs, providing readers with sign language interpreters, and providing specialised supervision, training and support. several studies (bruyere, erickson & vanlooy 2000; cleveland, barnes-farrell & rats 1997; lee 1996; mitchell, alliger & morfopoulos 1997) investigated the types of reasonable accommodation implemented by employers. smith, poval and floyd (1991) suggested guidelines to increase an understanding of disability in the workplace. these scholars recommend that special disability training be provided to a variety of staff within an organisation. these include staff who are involved in training, staff formally responsible for disability issues, staff involved in selection and recruitment, managers with newly appointed disabled employees, and staff with disabilities. research method and design study design a qualitative research design was chosen for this exploratory, single case study, which involves the collection, organisation and interpretation of data gained through interviews and observations (malterud 2001). an exclusive qualitative method is effective when little is known about a topic and is a ‘strong initial research option’ (hartley & muhit 2003), as is the case of this study where the challenges people with disabilities faced in south african igas were explored. setting the study was conducted in one of the sheltered workshops in bloemfontein, free state (south africa). this workshop is under the management and supervision of the association for people with disabilities, which is a non-profit organisation. the sheltered workshop consists of one manager, one facilitator and 54 people with disabilities operating in different groups. they generate income through handmade products sold to the public and businesses. study population and sampling strategy the study population during the period of the study consisted of 54 people with disabilities. a total of 24 participants were selected for the study using purposeful sampling and included as much diversity as possible. men and women of working age (18–60 years), representing diverse ethnic groups and languages such as xhosa, zulu, sotho, afrikaans, and tswana were selected. participants with physical, mental and intellectual disabilities who had been participating in igas in the sheltered workshop for longer than 6 months and who are recipients of a disability grant were included. participant detailed demographic characteristics are displayed in table 1. table 1: demographic profile of the participants. data collection observations and semi-structured interviews were used to collect data between august and september 2016. the researcher obtained permission to conduct the study from the manager of the workshop before the study commenced. the researcher established rapport with the participants as one of the strategies to obtain approval and assured them confidentiality (eds. ritchie et al. 2013). the researcher visited the workshop and took notes. observations were conducted four times a week, for an hour and a half per day for 2 months. according to creswell (2007, 2013), prolonged engagement with participants ensures that false conclusions were not reached. the observational protocol captured information about the challenges experienced by participants while making handmade products. field notes were used to report and reflect on everything that was observed in the workshop. after observations, individual interviews were arranged with participants. the interviews comprised short questions which evoked responses that reflected participants’ experiences with igas. interview sessions, which lasted an hour each, were digitally recorded. the participants agreed that all the interview sessions could take place at the sheltered workshop as it was convenient for them. the interview schedule was constructed in english, translated into sesotho and isixhosa and administered in the same languages. the reason for translating this interview schedule in these languages was that the majority of the participants in the sheltered workshop spoke sesotho and isixhosa. the researcher is fluent in isixhosa, isizulu and english, but had difficulties in comprehending sesotho. thus an assistant was enlisted who was fluent in sesotho and english. the researcher trained the assistant on how to conduct interviews and feedback meetings were held to clarify issues and ensure that there was a shared understanding of the data gathered. data collection ceased after data saturation was reached. the researcher, therefore, conducted interviews with 18 of the 24 participants selected for the study. in qualitative studies, 12–15 participants are generally considered sufficient for a study (green & thorogood 2004). the researcher returned to the participants with the transcribed interviews. they were satisfied with the content and indicated that they had nothing to add. data analysis recorded data was transcribed in the original languages. the transcribed data was then translated into english and then transcribed verbatim before analysis was done. two bilingual individuals checked the quality of the translations. inductive content analysis was applied (eds. ritchie et al. 2013). content analysis was selected because it is a widely used qualitative research technique and researchers regard it as a flexible method for analysing text data (cavanagh 1997). to gain familiarity with the text, the researcher read and noted down initial ideas. ideas and concepts were identified, and relevant units were coded, which were then clustered into subcategories. paradoxes and conflicting ideas were explored, and similar opinions were merged (eds. onwuegbuzie et al. 2009; ritchie et al. 2013). the researcher finally interpreted the findings. the number of participants was small; thus data was analysed manually (gobo 2008). verbatim quotations from interview transcripts were extracted to illustrate relevant themes where appropriate. ethical consideration trustworthiness was established according to the recommended strategies from published methodological sources (lincoln & guba 1985). no incentives were offered, increasing the possibility that participants had an interest in the topic. a pilot study was done to eliminate possible errors and problems in the research instruments. ethical clearance was obtained from the faculty of natural and agriculture science ethics committee, university of the free state, reference number: ufs-hsd2016/1436. verbal consent was obtained from all participants before and during data collection in the presence of a facilitator. participation was voluntary, and participants could withdraw any time they wanted to. confidentiality was maintained throughout the study by using pseudonyms on audio recordings, interview notes, and transcripts. findings and discussions the main theme identified was ‘experiences of people with disabilities in the workshop’ four subthemes were identified in the analysis of the findings. for the purpose of this article only two subthemes will be focused on, namely, barriers experienced with igas and coping strategies to overcome the barriers. other themes will be discussed at a later stage because of the amount of information and the length of the article. barriers experienced with income-generating activities participants identified several barriers that limited their participation in economic activities. the participants reported on institutional barriers (ability to use working tools, inability to concentrate for long periods, lack of funds, language barriers, lack of motivation, activities not stimulating, lack of artistry skills) and attitudinal barriers (exclusion from decision making). institutional barriers ability to use working tools the participants reported that they sometimes struggled to use their working tools due to the nature of their disability, which affected their performance. this was explained by a 27-year old man (m) with lame left limbs and learning disability: ‘i do struggle to sew due to my disability, the machine is faster than me, and i am very slow’. this was also corroborated by another 28-year old man (f) with bone and joint deformities and visual impairments: ‘problem i get is not getting the beads that i like because i cannot see properly’. some of the participants stated that they encountered some difficulties when using scissors and measuring. this barrier was also detected during observations, as some of the participants were unable to use the tools correctly. for example, participants in the beading project were struggling to use the fish line, which is a tool used to pick up beads. some of the participants who were involved in a knitting and crochet work project struggled to hold crocheting hooks while others did not know how to use scissors. interpretation of these findings indicates that people with disabilities’ working equipment are not adjusted and modified to accommodate the needs of the participants despite the mandate of code of good practice (republic of south africa 2002). this is similar to a study on skills development for youth living with disabilities in four developing countries (kett 2012). also, to support these findings, scholars (berthoud 2008; jones & jones 2008; meager & higgins 2011) state that, different impairment characteristics, as well as the type, severity and health problems, influences the participation rate of people with disabilities. the social model argues that it is the society that impairs the individuals, in this case the society has failed to provide adequate accommodations to the participants. inability to concentrate on the activities for long periods inability to concentrate on activities for long periods was observed and highlighted in the interviews as one of the barriers that hindered participation. some participants, for example, indicated that they got easily distracted and could not focus for long and other participants stated that they got bored of doing the same thing. this is similar to the findings of the working paper on livelihood challenges for extremely poor disabled people in the southwest coastal region of bangladesh (nokrek, alam & ahmed 2013). a 26-year old woman (g) with spina bifida stated: ‘i cannot concentrate because i get tired easily’. lack of funds the issue of funding was another barrier faced by the participants. all the participants highlighted that their biggest challenge was lack of funds to purchase appropriate materials. this was evident as some of the participants were using tiny sized beads, which were donated by community members. the participants indicated that the beads they were working with were the only ones available, and this hindered their full participation. additionally, the participants reported that they were no longer receiving a stipend due to lack of production caused by lack of funds. to support the general view of the participants, the following was captured from a number of transcripts: ‘there is no money here to buy proper material, they give us scraps to work with, and we have not been paid for months now’. another 44-year old woman (i) with involuntary muscle movement in both legs stated: ‘i do not like working with different textures; some textures tangle, i so wish they can get proper material that does not tangle, but we were told that there is no money. i cannot proceed with my work the way i would like to because i need to keep on fixing the wool. it is a waste of time and energy, and it is frustrating me’. lack of funds continues to be a challenge for people with disabilities and is a barrier to participation. this challenge resulted in participants having to use inappropriate material for their projects, which in return resulted in poorly constructed products. this hindered the growth of their projects. kaeane and ross (2014) and schneider (2006) also reported that limited funding hindered the ability of projects to grow. lack of non-human resources specifically funds, were frequently mentioned to be barriers in a study by hästbacka, nygård and nyqvist (2016). this lead to increased demands for cost-effectiveness, as well as demands for eliminating unnecessary and costly obstacles in service provision. it is also evident from the findings that generally, programmes for the empowerment of people with disabilities were underfunded or not funded at all. this finding is supported by white paper on the rights of persons with disabilities (republic of south africa 2017), which indicates that one of the weaknesses in the subsidised supported employment environment that offers income generating activities opportunities to their members is the lack of financial support. non-payment of stipends is a serious concern because it has a direct influence on the motivation of the participants (lack of motivation is another barrier addressed in this section). remuneration plays a role in attracting and retaining individuals (mabaso & dlamini 2017) and could be a reason for participants’ lack of motivation and dissatisfaction. language barriers this barrier was an issue of concern. participants pointed out that they were experiencing a language barrier with the facilitator because she only spoke english and afrikaans. the participants spoke mostly sesotho and isixhosa and did not understand english due to their low educational achievement. this had a negative impact on their participation, as they could not effectively communicate with the facilitator. this barrier, according to the participants, hindered their participation as they were unable to explain what they wanted to do. this point was aired by a 38-year old woman (p) with down syndrome: ‘i am reluctant to seek help because i do not know how to speak english. i only know how to speak sesotho, so i end up doing nothing’. the participants’ views are supported by kamil (2015), who contend that communication restriction inhibits learning to progress successfully and lack of ability to communicate in english can lead to communication barriers. a similar finding was also indicated by gunatilaka et al. (2010). this finding indicates that workplace accommodation guideline (providing interpreters for people with disabilities) stipulated in the code of good practice (republic of south africa 2002) is not being followed by the organisation. lack of motivation the participants cited the lack of motivation to produce either new products or good quality products as another challenge they experienced. participants felt that they were doing the same activities all the time, and when they finished their tasks, they did not receive appreciation and positive recognition. this point was made by a 28-year old man (f) with bone and joint deformities. ‘there is nothing new from what i knew then and now, whatever i learnt and knew is from my previous school. i got demotivated here; we do the same boring things every day, i wanted to do welding, wood hangers and key holders’. a 46-year old man (q) left paralysed by a stroke in his left arm also stated: ‘we do not have deadlines, no motivation from the facilitators to produce good quality products’. the general picture that emerges from this is that some of the participants’ needs are not met, hence they are demotivated. it also appears that intrinsic motivation such as to use one’s ability, receiving appreciation, positive recognition, as well as being treated in a caring and considerate manner seems to play a crucial role in motivating the participants. according to joseph (2015), individuals have habits and needs that must be managed in order to be motivated. this aspect together with the language barrier to communication should be crucial in the management of people with disabilities. activities that are not stimulating some participants claimed that some of the projects they were taking part in were not stimulating. as a result, they ended up wandering around or not finishing their work. this was pointed out by a 28-year old man (f) with bone and joint deformities and visually impaired who stated: ‘i do not enjoy what i am doing because it does not challenge me and i am not interested in what they have here, so i end up not finishing what i am supposed to do’. this was also corroborated by another 24-year old man (h) with cerebral palsy: ‘this place does not a have a long-term plan and a clear vision for me, i have lots of things i want to pursue i want to concentrate on business’. the views are supported by brouwers, van brakel and cornielje (2011), who contend that people with disabilities involved in low skilled jobs offer little or no opportunities for career progression and are condemned to produce homemade products which are uninspiring. nonstimulating activities was reported as a barrier in a study by naami (2014). this finding accentuates the need for the development of more modern market-driven projects that will generate income for the participants. lack of artistry skills artistry refers to the quality imparted to a product in the process of making as well as a human attribute relating to knowledge and skill at performing a task. during observations, the researcher noticed that some of the projects were constructed in such a way that there was no prospect for growth, neither was there any useful structure for a long-term vision for the projects. some of the products, for example, knitting, tapestry and beading, were constructed unevenly and there were inconsistencies in the construction of the patterns. it was also observed that some participants did not measure the material before cutting and as a result, ended up with yarn being wasted. one participant was making a beaded necklace that was uneven because the participant did not count the beads. therefore, she had to redo it in order to make it wearable. the root cause of this barrier is low skills levels of the participants, which may be due to lack of basic education and training and that the quality of training received by the participants was poor. lack of skills amongst people with disabilities has been identified as a major challenge, which inhibits their economic participation (momin 2004; schneider 2006; soudien & braxton 2006). powers (2008) points out that compared to people without disabilities, people with disabilities exhibit a skills deficit, which interacts with other barriers to create a double disadvantage in the labour market. the strategy to overcome this hurdle would be to provide various basic quality training, including information and communication technology skills (ict) to people with disabilities. unesco (2009) asserts that education and training will empower the disadvantaged to take control of their lives. development of relevant skills is the key to improving productivity and can open doors to economic participation. attitudinal barrier exclusion from decision making was one significant attitudinal barrier that hindered the participation of people with disabilities. participants felt that they were not taken seriously and were excluded in decisions taken by either the supervisors or management. this was pointed out by a 29-year old woman (a) with epilepsy: ‘they do not take us seriously, and they do not trust us to make our own decision the supervisor chose which colours to use for our products’. this was also corroborated by another 43-year old woman (d) with a learning disability: ‘things change here all the time without being informed’. the fact that some of the participants could not choose the colours and activities to work on, while others got to choose might have been due to the misconception about the ability of people with disabilities to perform well in activities. this view confirms naami’s (2014) statement, that people with disabilities experience discrimination in all spheres of daily life. naami (2010) mentions in another study the negative impact of unemployment on women with physical disabilities in tamale, ghana. carney (2002) further points out that being excluded in decision making is typical among the worlds’ vulnerable people. the participants’ view is also supported by moran, gibbs and mernin (2017), who indicate that individuals with disabilities often experience very little control over their own lives as decisions are made for them. the involvement in decision making by people with disabilities is included in the guidelines for the integration of people with disabilities as set out in the white paper for social welfare (republic of south africa 1997a). the examples mentioned above indicate that these barriers can lead to the exclusion of people with disabilities. hence, the perspective of the social model highlights that disability is not only an individual medical issue rather when changes are made in society, then people with disabilities can be included. coping strategies used to overcome the barriers some of the participants shared positive stories of what worked well for them despite the challenges. guidance from co-workers, experience from a previous school and improvisation were reported. guidance from co-workers some of the participants reported that they overcame the language barrier by asking one of the co-workers who were multilingual to translate for them. this point was aired by a 43 year old man (d) with stroke on the right side. ‘when i do not understand what is being said by the manager or facilitator, i usually ask my friend who speak english and sesotho to help me, and i do not know what i would have done if it wasn’t for him because i only speak sesotho’. this indicates an example of the value of teamwork and that accommodations need not to be expensive. experience from a previous school one of the participants who assisted the facilitator with igas reported on how he overcame the struggle of not being able to use the working tools properly and how he assisted other participants who struggled to count and use the tools. the following excerpt by a 24-year old man (h) with cerebral palsy briefly describes how he used his experience to help his co-workers: ‘i overcame my struggle by first drawing and writing on the paper, what i am supposed to do before i knot the fishline. i then practise and practise until i get it right, and that works well. i now use the same method when i struggle with my work, and when i teach my colleagues’. the participant reported that he learnt this method from his previous school. the participant’s view is confirmed by block, taliaferro and moran (2013), who contend that peer tutors serving as a ‘workbuddy’ are helpful and can be used to motivate participants when there is a shortage of staff. improvisation the participants indicated that they used the material that was available and used their creativity to carry on working. these findings indicate that the participants were able to use their problem-solving skills to remove some of the barriers. solving problems (use of available resources and recycling material) and seeking support and guidance from peers in order to participate conclusively, demonstrate the interactional and behavioural components of empowerment (zimmerman 1995, 2000). conclusion this study illustrated the barriers faced by people with disabilities participating in igas in a sheltered workshop. the participants reported on the challenges, which were mostly institutional. such barriers limited their economic participation. the understanding of barriers to economic participation for people with disabilities gained through this study is essential for the effective intervention and development of strategies to promote their participation. it is noted that all these challenges experienced, directly and indirectly, influenced the participation in the projects and some were beyond the scope of a person to change. institutional barriers have various consequences for people with disabilities. the social model of disability suggests that the collective disadvantage of people with disabilities is due to a complex form of institutional discrimination. the social model also purports that modern-day discrimination is a socially created phenomenon, which in reality has little to do with the actual physical or mental impairments of disabled people. thus in the case of this study, the cure lies in restructuring society by addressing workplace accommodation. limitations this study took place in one sheltered workshop. the sample size did not allow for the generalisation of results, although data were collected until saturation was reached. the views of the participants in the sample do not represent the views of all people with disabilities participating in igas. the study only focused on people with disabilities. recommendations there is a need for good basic education to ensure follow-through with skills and employment. improved existing training programmes that accommodate the needs and challenges of people with disabilities are required because training can lead to better outcomes and improved output. the training programmes may include vocational education and skills training, offered as short courses will enable people with disabilities as well as facilitators to acquire adult basic education and skills that are relevant to the current labour market demands. the organisation could also meet the needs of people with disabilities by providing supported employment programme to prepare those who want to enter the job market. part of training programmes could also include diversity and inclusion workshops whereby a specialist facilitator will visit the sheltered workshop and present sessions with support workers and people with disabilities. such workshops can help build skills, such as communicating better with people from diverse backgrounds and reducing the levels of unconscious bias in their decision-making. methods of communication such as sign language and interpreting services, speech software and braille printing should be considered. support workers should be trained in sesotho and isixhosa in order to communicate with people with disabilities. it is also suggested that the government should improve funding for igas and that funders of income-generating projects should form part of a future study. facilitators could be included in future research as their viewpoints would provide further depth and ensure another dimension to the data collected. seeing that coworkers can assist in overcoming some of the barriers experienced it is therefore recommended that workers who speak the same language could be positioned next to each other. use of peer tutoring with adequate knowledge and skills could also make a difference in the lives of other peers in a number of ways. acknowledgements the authors would like to thank the participants who shared their experiences during data collection phase of the study. competing interests the authors have declared that no competing interest exist authors’ contributions n.t. provided the draft document and did primary data collection. h.s. and j.v. provided guidance and feedback on the 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with disabilities in poverty reduction work: “nothing about us, without us”’, world development 31(3), 571–590. https://doi.org/10.1016/s0305-750x(02)00218-8 zimmerman, m.a., 1995, ‘psychological empowerment: issues and illustrations’, american journal of community psychology 23(5), 581–599. https://doi.org/10.1007/bf02506983 zimmerman, m.a., 2000, ‘empowerment theory: psychological, organizational, and community levels of analysis’, in j. rappaport & e. seidman (eds.), handbook of community psychology, pp. 43–63, kluwer academic/plenum, new york, ny. article information authors: abigail wilson1 peta wills1,2 chrisma pretorius1 leslie swartz1 affiliations: 1department of psychology, stellenbosch university, south africa 2western cape rehabilitation centre, cape town, south africa correspondence to: leslie swartz email: lswartz@sun.ac.za postal address: private bag x1, matieland 7602, south africa dates: received: 09 dec. 2014 accepted: 24 june 2015 published: 20 aug. 2015 how to cite this article: wilson, a., wills, p., pretorius, c. & swartz, l., 2015, ‘cognitive rehabilitation groups: a thematic analysis of feasibility and perceived benefits for clients with moderate to severe traumatic brain injury living in the western cape’, african journal of disability 4(1), art. #175, 7 pages. http://dx.doi.org/10.4102/ajod.v4i1.175 copyright notice: © 2015. the author(s). licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. cognitive rehabilitation groups: a thematic analysis of feasibility and perceived benefits for clients with moderate to severe traumatic brain injury living in the western cape in this original research... open access • abstract • introduction • literature review • objectives • methodology       • ethical considerations • findings and discussion    • the preinjury and post injury self    • a sense of exclusion    • reintegration of the self through others    • birth of identity    • building bridges and creating confidence    • practical skills developed • conclusions • acknowledgements    • competing interests    • author's contributions • references abstract top ↑ background: traumatic brain injury (tbi) has a significant impact on the burden of care within the south african setting, impacting on the individual, the family, and the community as a whole. often the consequences of tbi are permanent, resulting in numerous financial and emotional stressors. objective: this research focusses on the experience of outpatient cognitive rehabilitation groups for individuals who have suffered moderate to severe brain injuries within the south african setting. method: participants with moderate to severe brain injury were required to attend five cognitive rehabilitation groups and engage in a semistructured interview. qualitative data were examined via thematic analysis, to determine participants’ subjective experiences of group participation. results: there is a need within the south african setting for cognitive rehabilitation and support groups for individuals who have experienced a tbi. the benefits were notable for both the individuals attending and their support systems. in spite of the benefits there were notable limitations to attendance, including financial restrictions and transport limitations. conclusion: according to participants and their families, there is a scarcity of resources within the western cape for clients who have sustained a tbi. despite limitations in capacity to attend there appears to be a need for structured outpatient cognitive rehabilitation programmes integrating the complex cognitive and emotional challenges faced by individuals with tbi and their families. introduction top ↑ this article reports on a group intervention for survivors of traumatic brain injury (tbi) and their families. tbi is a significant public health problem worldwide (khan, baguley & cameron 2003; nell & ormond-brown 1991; shukla, devi & agrawal 2011) and has been reported as the leading cause of death and disability in adolescents and young adults in the united states of america (vaishnavi, rao & fann 2009). tbi is a prominent challenge within communities and creates a significant drain on resources for families, communities, and countries (feigin et al. 2010), with developing countries, such as south africa, exhibiting a higher prevalence rate in comparison to developed countries (nell & ormond-brown 1991). literature review top ↑ a tbi is caused by an external impact to the brain resulting in temporary or permanent neurological dysfunction (khan et al. 2003). it is an ‘externally inflicted blow to the brain with a cause that is not of a degenerative, vascular, infectious, or congenital nature’ (vaishnavi et al. 2009:199). according to the department of health in kwazulu-natal, south africa, the three primary causes of tbi within the south african setting are motor vehicle, bicycle or vehicle-pedestrian accidents (accounting for over 50% of all reported tbis), individuals falling and obtaining a tbi (accounting for an estimated 25% of reported tbis), and finally, interpersonal violence (accounting for approximately 20% of all reported tbis). the department of health in kwazulu-natal (2010) reported that individuals between the ages of 15 and 40 years were at the highest risk of brain injury. tbi can cause impairment in neurological and cognitive functions leading to restrictions in activity and hindering participation in social events (shukla et al. 2011). the consequences of tbi can be severe and permanent, altering a person’s life and causing disruption in dynamics within the family (khan et al. 2003). full recovery from moderate to severe tbi often does not occur, and after even two years an individual may not have reached their baseline level of functioning (vaishnavi et al. 2009). functional recovery for individuals who have sustained a moderate to severe traumatic brain injury tends to be more rapid than recovery from the more complex behavioural symptoms (vaishnavi et al. 2009). limited capacity to participate in leisure activities and the presence of behavioural, social, and cognitive changes in individuals with tbi tends to result in increased social isolation and decreased stimulation for these clients (laatsch, little & thulborn 2004; powell & malia 2003; sander et al. 2012). a brain injured individual may have reduced capacity to perform in educational and occupational settings, resulting in dependence on government issued grants for financial support. further financial stressors are noted through increased medical expenses and loss of income generation (radomski 2002; sander et al. 2012; schultz n.d.). brain injured individuals frequently have a decreased capacity to live independently (sander et al. 2012), and this may result in previously employed family members leaving their place of work to care for individuals, increasing financial stressors. the result is frequently a decrease, or loss, of income and earning potential, resulting in increased financial strain for the individual, and his or her family, over a lifetime (khan et al. 2003; sarajuuri et al. 2005). the consequences of tbi are social, emotional, and cognitive, affecting both the individual and his or her family (gianutsos 1991). the gaps in care for individuals (post-tbi) include both cognitive and emotional aspects, with a sample of 895 post-tbi individuals reporting that their most critical need was an improvement in cognitive skills (heinemann et al. 2002). cognitive rehabilitation refers to a particular set of interventions with the aim of improving an individual’s capacity to execute cognitive tasks by relearning previously learned skills and teaching compensatory strategies (tsaousides & gordon 2009). cognitive rehabilitation has been defined by the american congress of rehabilitation medicine as ‘a systematic, functionally orientated service of therapeutic activities that is based on assessment and understanding of the patient’s brain-behavioural deficits’ (cicerone et al. 2000:1596). it is generally directed towards, but not limited to, attention, memory, language, comprehension, and communication and executive function (cicerone et al. 2000; tsaousides & gordon 2009). cognitive rehabilitation is the current treatment of choice for the diverse impairments that individuals with tbi experience and is currently standard practice worldwide (sander et al. 2012). current literature indicates that cognitive rehabilitation programmes have been shown to be effective in restoring some physical and vocational functioning (kim 2011). improvement in individual and family financial status and emotional well-being has been reported following participation in cognitive rehabilitation programmes (sander et al. 2012). cognitive rehabilitation groups generally aim towards increasing a person’s capacity to integrate effectively with his or her community which includes, amongst other things, being accepted by others, being a part of a network of family and friends, and being involved in meaningful and productive day to day tasks (winkler, unsworth & sloan 2006). with participation in cognitive rehabilitation groups and the provision of homework tasks, to be completed with family members, one aims to increase participants’ sense of belonging and sense of purpose within society. very little is known about cognitive rehabilitation groups and their use in africa (nell & ormond-brown 1991; schneider et al. 1999; schrief et al. 2008). the current study fills a gap in the literature by providing a description of this type of intervention in a low resource context. objectives top ↑ the aim of this study was to describe a pilot outpatient cognitive rehabilitation programme for individuals with a moderate to severe traumatic brain injury. the research aims to determine whether cognitive skills programmes were perceived as subjectively beneficial, both cognitively and emotionally, by participants. methodology top ↑ the research utilised a qualitative research paradigm to extract predominant themes relating to the subjective experiences of group participants and their caregivers. a qualitative research methodology allows space for exploration into the quality and texture of experience and therefore embraces the individuality of the participants’ experiences (hesse-biber & leavy 2006). the interviews were qualitatively understood through utilising thematic analysis techniques, which is understood as ‘a method for identifying, analysing and reporting patterns or themes within data’ (braun & clarke 2006:79). this is achieved by organising the data into thematic groups in order to understand and describe subjective experience. data were gathered within the group setting (recorded by note taking immediately after each session) and in individual semistructured interviews following participation in five group sessions. a.w. and p.w. were involved in both the intervention and the data collection. p.w. is a qualified clinical psychologist working in the field of rehabilitation and a.w. was a master’s student in psychology with considerable experience in the counselling field. the research recruited individuals with moderate to severe tbi to participate in the groups and individual interview process. they were recruited from a specialised rehabilitation centre within the western cape via purposive sampling. it was required that suitable candidates needed to have sustained a moderate to severe brain trauma based on a glasgow coma scale (gcs) score of less than 13 on admission to hospital and/or post-trauma amnesia lasting for a period longer than 24 hours postinjury (edeling et al. 2013). research indicates that the plasticity of the brain becomes notably limited 24 months postinjury and for this reason time of injury was restricted to within the past 24 months (ribbers 2013). all candidates were required to speak conversational english and at least one responsible adult needed to be available in order to assist them in attending the group and with postgroup tasks. individuals with psychiatric illness, previous brain injury, or significant language impairments were excluded from the sample due to participation limitations and confounding variables. written consent using an approved form to attend the groups and participate in the individual interview process was received from all participants (n = 14) as well as from their primary caregivers (who accompanied them to sessions), where applicable. this represented all those who attended the groups. those who provided consent were required to participate in five once weekly groups which were divided into domains of cognition. these domains were based on previous divisions created by powell and malia (2003), and included education regarding brain injury, memory skills, thinking skills, executive skills, and awareness skills. in addition, participants were required to complete homework tasks outside of the group, encouraging learning and application of skills covered within the session and increased interaction with family members. finally, consent to participation required that clients engage in an individual semistructured interview on completion of the group intervention to ascertain their experiences within the group process. participants’ age range was from 19–67 years with a mean age of 31.7 years and standard deviation of 16.7 years, representing a cross section of individuals identified as ‘at risk’ for tbi within the south african setting (nell & ormond-brown 1991). time of injury ranged from between six and 24 months, and brain injury location and cause of injury was variable across the sample. participants varied in terms of sex, ethnicity, primary language and level of education (table 1). table 1: participants’ demographic characteristics. ethical considerations ethical approval for the study was obtained from the human subjects ethics committee at stellenbosch university, from the department of health in the province, and from the hospital itself. all participants were fully informed of their rights, including their right to withdraw at any time. no refusals were obtained. the participants’ confidentiality was protected by assigning them a participant code when the data was analysed. findings and discussion top ↑ analysis of the data revealed that despite some differences, there were numerous shared attitudes, thoughts and opinions identified across all interviews. aspects of identity and separation from society dominated the groups, with the group serving as a transition vessel for acceptance by others. the preinjury and post injury self a predominant theme within the analysis was the shift, or loss, of identity following brain injury. with a perceived ‘fault line’ between the person before and the person after the brain injury, resulting in a sense of alienation from the person after injury. within this came a sense of eroded memories and a desire to preserve the previous self, as expressed by y.m.: ‘they all remember me the way i was. i didn’t want them to see me the way i am now’. this need for preservation of identity prior to injury seemed necessary for the brain injury survivor but also presented as a strategy to assist others in coping with the changes and inherent loss of some dreams and expectations held by family members. in discussing families coping with changes postinjury this adjustment of expectations became salient. r.c. shared this sentiment during one of the sessions together: ‘when i had the accident she [mother] cried because i’m not the boy i was meant to be’. paterson and scott-findlay (2002) further link this theme with the challenges of limited self-awareness and insight which many individuals experience after traumatic brain injury, which further contaminates the individual’s journey towards reintegration of the self. a sense of exclusion the theme of feeling existentially lost due to changes in the self, as well as forgotten by society, permeated the group and individual sessions. this is consistent with past research of brain injury survivors which indicates that social isolation and reduced participation in social activities is a common consequence of brain injury (sander et al. 2012; winkler et al. 2006). g.m. shared this feeling of isolation during the sessions: ‘i was lonely at the time when i had the accident … i was always just basically on my own. … i felt so helpless’. a sense of loss of connection to the world seems to be a common experience amongst brain injury survivors and a desperate need to go back to how it was, to reconnect, and feel a sense of belonging again. this sense of disconnection and change was expressed frequently within the group sessions and shared again by p.d. in the individual interview: ‘it’s been difficult for me. when i had the stroke, when i had the stroke – then i had many friends, but my friends didn’t come and visit me’. difficulties with sustained attention and fatigue further exacerbate the challenges of societal reintegration through decreased tolerance and an increased sense of confusion in high stimuli environments (paterson & scott-findlay 2002). a sense of wanting to change, either back to who one was or to rediscover the self, and adapt to changes post-trauma in order to again be a part of society, was apparent. b.a. expressed this perception of change and displacement during the sessions: ‘you are just you and out there is people that want you to be like them’. yet within this theme participants expressed a lack of skills and understanding to engage in this process of change and reconnection, which presented as a significant hindrance to their recovery process. social exclusion post-traumatic brain injury, and a lack of skills to include the self or relearn social skills in isolation, seemed to result in a further loss of social skills, and hence increased social exclusion. it seemed that many individuals with traumatic brain injury eventually isolate themselves entirely from society due to an increasing sense of social incompetence and exclusion as well as decreasing self-esteem. as g.m. stated, more than one year postinjury: ‘nowadays, i’m just like … like … being at home, staying at home, and i don’t usually go out with my family’. the sense of loneliness and isolation from society, experienced by participants, permeated many of the group sessions. thus, it is not surprising to find such high rates of both depression and anxiety amongst people who have experienced traumatic brain injuries (tsai et al. 2014). the group seemed to serve as a valuable place to allow for participants to reintegrate into society through allowing them to interact socially and assist other group members when required. y.m. shared this sense of reinclusion during a session together: ‘i used to, because of the accident, i used to shy away from conversation with people … i can speak with people more now by getting to interact … by saying more.’ (y.m.; 19-year-old male) reintegration of the self through others the concept of cognitive rehabilitation tends to focus on skills of memory, language, executive processes, and other aspects related specifically to how one thinks and reasons in day to day living. the rehabilitation of cognitive functions post-traumatic brain injury rarely acknowledges the importance of the client’s need to, in a sense, rehabilitate their own identity; to redevelop and relearn their own identity and the implications of this on themselves, their families, their communities, and their futures. the groups offered in this intervention did not provide a specific space for this existential exploration, yet within the tasks of memory, thinking, executive, and language skills, the group seemed to allow for the rediscovery of the self. as y.m. shared during the sessions, in regards to re-establishing contact with friends and family which he had isolated himself from since the accident: ‘i think i must communicate with them, because i’m not shy for people to see how i am now anymore’. the sense of increased confidence through the development of personal identity post-traumatic brain injury was apparent within the group interventions. although the more traditional cognitive tasks were beneficial to the participants, the predominant theme that emerged was that the groups allowed for interaction and exploration within the safe and reflective setting in order to begin rediscovering the self. for many participants the group setting was the first social interaction they had experienced that was non-judgemental and supportive, which allowed them to explore their strengths and weaknesses postinjury within a space where they felt they belonged. being surrounded by people who had experienced brain trauma allowed clients to interact more freely. b.a. expressed this sentiment during the individual interviews after the group sessions had run their course: ‘because every human being is different like. but, but we are the same. we are a family. we have become a family’. the group developed into a space where the participants could access their identity prior to their injuries and begin the process of integrating that with their present identity, providing a space to belong and explore the self. within this the groups seemed to break the cycle of social exclusion and declining self-esteem. in reflecting on the group experience r.c. was able to verbalise this sense of personal development: ‘it changed my life and made me a better person and it made me that i don’t feel so bad about myself anymore. not like i did before’. birth of identity the cognitive rehabilitation groups seemed to provide a space for participants to regain their sense of self through a journey of learning and self-discovery. the groups allowed for increased insight in terms of cognitive strengths and weaknesses as well as interpersonal and emotional development. y.m. described this experience during individual interviews: ‘it was talking about what happened to me … sharing with the other people that were in the group with me. and because i see there are other people that went through or similar incidents that i went through and they are going on with their lives. it has actually encouraged me also to not sit back and to go on with my life.’ (y.m.; 19-year-old male) the group participants encouraged one another to explore themselves and rediscover who they are postbrain injury. when leaving the group, b.a. expressed how this changed his perceptions of himself as an individual, as a unique being, separate from the perceptions of society: ‘every time when i walked out here, i said to myself, “from now on what you learn today, you must be yourself. don’t let other people around you take over your life. don’t let them climb into you. remember you be you.”’ (b.a.; 51-year-old male) the desire for participants to connect with others and interact was overwhelming with the majority of members requesting ongoing groups and an increased frequency of the groups. building bridges and creating confidence the group served as a bridge to various societal links, to one another within the group and creating new links between caregivers and survivors. as groups progressed, involvement by family members seemed to increase and there was a sense of pride expressed by the caregivers at the capacity and enthusiasm that their family member exhibited whilst engaging in the cognitive tasks provided to them. in response to a question probing this shift in family and caregiver relationships, b.a. was able to share: ‘i think the reason why is because i’m doing stuff now on my own and my wife and daughter say, “aah, look what he has done, hey? you can see him going better and better, better now!” then i feel so proud of myself that i burst out in tears.’ (b.a.; 51-year-old male) the groups provided a starting-point for the development of skills and confidence which participants were able to generalise across setting, allowing for improved interpersonal relationships, increased self-confidence, and an overall improvement in perceived quality of life. research by sander et al. (2012) found a direct relationship between the emotional functioning of caregivers to tbi survivor’s productivity and social integration. the current research indicates that this relationship is interdependent and reciprocal, such that as one factor improved others also strengthened and improved allowing for notable changes within the entire family systems. a change was perceived during the group interventions, as families began feeling a sense of pride at the accomplishments and determination of their spouse or child; as b.a. shared, ‘they [family] are very, very, proud as well … i am told that i am getting on well now. better than before …’, and participants seemed to flourish at the opportunity to have goals, an identity, and a sense of responsibility. similar findings were noted in the research by bay, blow and xie (2012), showing that increased involvement with others and a sense of being valued within a group had a positive impact on emotion regulation, confidence, and social skills. the increased support by caregivers, family and friends, through participation in a group, seemed to allow for increased confidence amongst group members and an increased desire to accomplish more in order to further enhance relationships. y.m. shared this newfound sense of confidence and energy: ‘i actually go out more now. before i didn’t want to go out’. in this sense, the group sessions allowed participants to begin exploring beyond the group setting, beyond the safety of the family setting, and into the community, which had previously felt to be a scary and rejecting place. g.m. was able to express this change in societal perceptions following participation in the rehabilitation groups: ‘my friends tell me i’m a little better … they are respecting me now’. the act of participating in a cognitive rehabilitation group seemed to have an impact far beyond improving the initially identified cognitive skills of memory, executive functioning, language and attention. although these aspects featured as important in providing clients with the skills to interact socially, they were overshadowed by the intrapersonal and interpersonal benefits of group participation: ‘now, i speak more to my mom. before i never used to speak a lot to her’ (y.m.). the groups allowed for the cycle of social exclusion and decreased self-esteem to be broken and allowed participants to develop their own identity again postinjury. statements made by the participants such as, ‘i believe in myself now’; ‘my mood is more up than down now. before i used to be very depressed’ (y.m.); and ‘i’m now more calm and at ease’ (g.m.), are indications of the value of these interventions in assisting individuals who have experienced traumatic brain injuries. practical skills developed the group aimed to explore the experience of cognitive rehabilitation groups within a low socioeconomic setting. although the predominant themes of identity and a desire to belong within society emerged from the data analysis, there were also clear cognitive benefits of the group expressed by the participants. concrete skills and compensation strategies served as useful tools to assist clients in developing their social abilities and interpersonal skills. y.m. was able to identify his limitation and implement compensatory strategies based on the skills learnt: ‘i got a diary to help me remember things because my short term memory is not so good. sometimes i forget so i write in the diary. so if i do forget then i look at it and i read what i did that day and then i remember. now i can look back and tell them.’ (y.m.; 19-year-old male) cognitive skills allowed for participants to engage more appropriately with individuals and to better recall what they needed to do as well as what friends and family members were doing. participants reported an improvement in both memory skills and executive skills following the brief cognitive rehabilitation group intervention, as b.a. shared, ‘the main thing what i have learned here is to make that plan and how to do that plan’. in addition, the group provided clients with a new sense of motivation and confidence to practice and learn new skills in the future in order to further improve their quality of life: ‘now i actually practice my handwriting more since i have been in the group. and i read more. so it has encouraged me to read more’ (y.m.). the groups also provided concrete techniques to assist participants, and family members were encouraged to engage with the members in order to better understand brain injury. through improving understanding, family members were better able to assist in the growth of participants, which further increased confidence; as y.m. shared, ‘she used to laugh before when i said that i couldn’t remember. now she helps me to remember things’. the homework aspect of the groups enhanced the development of connections amongst family members and caregivers, further contributing to the theme ‘building bridges’. participants expressed notable cognitive benefits from participating in the groups but the group sessions also seemed to provide a space beyond ‘cognition’, serving as a base to reconnect with the self and society and thus improving the interpersonal relationships for group members. conclusions top ↑ the subjective experiences of participants within this group process was overwhelmingly positive, with an increased sense of belonging within society, and increased understanding of the self, as well as an improvement in some cognitive skills, such as memory and planning. in spite of logistical challenges, participants managed to attend the majority of sessions and the reality of the challenges they faced became integral to the group process. suggestions by participants were to include more people in the groups and to include more homework tasks that required access to the community: the presence of multiple languages and individual differences in functional levels presented as a constant challenge within the groups, as expressed by g.m. in the interviews: ‘some words i could never understand, but … i didn’t had [sic] a dictionary which i could have looked it up in the dictionary’. the multiple languages used within south africa are something one needs to take cognisance of when preparing group interventions. the end of the group marked the end of a valuable journey for all participants and their discontinuation presented as a significant loss to many members: ‘it feels like it is the end of beautiful things’ (b.a.). further research is required within the south african and africa setting to determine the applicability of cognitive rehabilitation groups amongst this population (nell & ormond-brown 1991; schneider et al. 1999; schrief et al. 2008). there is a notable need within the south african and african setting to improve post-tbi interventions in order to enhance recovery outcomes (feigin et al. 2010; marquez de la plata et al. 2008; schalock 1998). this study provides tentative evidence that it is possible to mount such a programme with scant resources; more information from other contexts will help build a stronger evidence basis. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. author's contributions a.w. 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justice framework critical disability theory applicability of the eightfold path to disability policy analysis research method and design ethical consideration trustworthiness findings discussion conclusion acknowledgements references about the author(s) tongai f. chichaya department of occupational therapy, school of health science, university of kwazulu-natal, south africa robin w.e. joubert department of occupational therapy, school of health science, university of kwazulu-natal, south africa mary ann mccoll canadian disability policy alliance, canada centre for health services and policy research; rehabilitation therapy/public health sciences, queen’s university, canada citation chichaya, t.f., joubert, r.w.e. & mccoll, m.a., 2018, ‘analysing disability policy in namibia: an occupational justice perspective’, african journal of disability 7(0), a401. https://doi.org/10.4102/ajod.v7i0.401 original research analysing disability policy in namibia: an occupational justice perspective tongai f. chichaya, robin w.e. joubert, mary ann mccoll received: 17 june 2017; accepted: 21 may 2018; published: 31 july 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the namibian disability policy of 1997 has not been reviewed for about 20 years, which has raised concerns with persons with disabilities and stakeholders in the fields of disability and rehabilitation. in march 2017, the government publicised its intention to review the policy. thus, this study’s purpose was to generate evidence that can contribute to the development of a more current disability policy that will promote occupational justice. objectives: the aim of the study was to develop an alternative disability policy option for namibia and to present outcomes and trade-offs using a policy analysis approach while applying the occupational justice framework to gather evidence. method: a qualitative research design and bardach’s eightfold path approach to policy analysis were used. critical disability theory provided the theoretical framework. the occupational justice framework was the conceptual framework for the study. evidence from preceding phases of this study and appropriate literature was utilised to construct possible disability policy alternatives in namibia, set evaluative criteria, project outcomes and confront trade-offs. results: three main disability policy alternatives emerged: access policy, support policy and universal coverage policy. access policy had the fewest trade-offs, and the support policy had the most trade-offs in the namibian context. access policy was projected to foster occupational participation among persons with disabilities. conclusion: results have implications for selecting disability policy alternatives that promote occupational participation and justice among persons with disabilities in namibia. furthermore, the study has implications for advancing the practice of occupational justice in disability policy formulation. introduction the national policy on disability in the government of the republic of namibia (grn 1997) has not been reviewed since its inception in 1997. however, there have been several changes in the disability field, both locally and internationally, to which the current policy has not been responsive. typically, policies are reviewed after every 5 years, which means that the national policy on disability may not be responsive to the current needs and rights of persons with disability. according to the national namibia population and housing census of 2011, there were 98 413 persons with disabilities across the 14 administrative regions of the country, accounting for approximately 5.0% of the total population (grn 2012). however, these statistics are questionable because the census questionnaire was impairment based and many disabilities such as those linked to developmental and mental conditions remain unnoticed or unreported. the increasing prevalence of non-communicable diseases, high percentage of road traffic accidents, high prevalence of hiv and tb as well as a poverty incidence of 26.9% (grn 2015) suggest that the actual percentages of persons with disabilities are higher than the global estimations of 15.0% of the population. persons with disabilities in namibia have expressed dissatisfaction and frustration with their current life experiences (grn 2008; haidula 2016; sankwasa 2015; sibeene 2008). the undesirable life aspects experienced by persons with disabilities in namibia can be traced to local disability policy shortfalls. stakeholders in disability and rehabilitation services agree that there is a need to review the disability policy; the government recently publicised its intentions to do this (grn 2017a). the purpose of this study was to generate timely evidence on possible disability policy alternatives that could be used in disability policy formulation in namibia by applying the occupational justice framework to a step-by-step policy analysis approach initially proposed by bardach (2000), namely the eightfold path to more effective problem-solving. objectives of the study the aim of the study was to develop alternative disability policy options for namibia and to present outcomes and trade-offs using a policy analysis approach while applying the occupational justice framework to gather and critique evidence. contextual and theoretical background to the study the human rights model of disability, namibia’s disability policy environment, an occupational justice framework, critical disability theory and the eightfold path to disability policy analysis are presented in this section. the human rights model of disability is used in this study to support the theoretical and conceptual frameworks. human rights model of disability disability is an evolving, complex concept. defining it is complicated and controversial, often taking the dimension of a particular model or purpose for which it is being used. over the years many disability models have been used. these include the medical model, the charity model, the economic model, the social model, the bio-psychosocial model and more recently the human rights model (hughes & paterson 1997; mpofu & oakland 2010; shakespeare & watson 1997). the human rights model, which is currently emerging in africa, considers disability to be a human rights issue, based on the notion that all human beings are equal and have rights that must be respected (vanhala 2011). this model is the first to use moral principles as a basis for disability policy (degener 2014). people with disabilities are citizens and as such have the same rights as any other citizen. all actions to support persons with disabilities should therefore be rights based. this approach has merit the world over and more so in africa, where persons with disabilities have been subjected to extreme inequality. namibia signed the united nations convention on the rights of persons with disabilities (uncrpd) and its optional protocol; therefore, a rights approach provides a basis for disability policy formulation in namibia. this study adopted the perspective of the human rights model of disability, because it is based on moral principles and values as the base for disability policy. similarly, occupational justice emphasises that every individual has a right to participate in occupations of their choice and need. levelling the ‘playing field’ is underpinned in the human rights-based approach to disability so that persons with disabilities can access and participate in the livelihood, education, socio-economic, cultural, political and health sectors as equal citizens. in essence, this model caters for both civil and political rights, as well as economic and cultural rights. this includes removing physical and social barriers and bringing about attitude adjustment among policymakers, service providers and family members, with the aim to have a society in which all persons with disabilities have the freedom and necessary resources to participate in occupations of their need and choice. disability policy environment in namibia since namibia’s political independence in 1994, the government has enacted initiatives with the aim of improving the lives of persons with disabilities. these include introduction of a national disability policy in 1997, establishment of a disability unit in the office of the prime minister in 2001, and passing an act for the establishment of the national disability council in 2004 (members of the council were later appointed in 2012). transfer of disability services from the ministry of lands, resettlement and rehabilitation to the ministry of health and social services in 2005 resulted in two rehabilitation divisions within the ministry, one division under primary healthcare and the other under social services. in 2015, a new department of disability affairs was formed in the office of the vice president. three entities – the rehabilitation division under social services, the disability unit from the office of the prime minister and the national disability council – were transferred to this new department. the aim of the move to bring the three entities under one department was to streamline functions that relate to the empowerment of persons with disabilities and to correct the duplication of efforts that was happening in the ministry of health and social services. furthermore, the move aimed to reverse antagonism among personnel in the three entities, which were perceived to be causing complaints among persons with disabilities over the past years. the impact of this move on the lives of persons with disabilities is yet to be seen. the historical juggling of the disability services between various (and sometimes unsuitable) government departments, as described above, is also indicative of gaps in the local disability policy. the current disability policy was developed by a european freelance consultant who had a 2-year exposure in namibia. the suitability of such a consultant in developing a responsive local disability policy is debatable. typically, policy development is a systematic process that is based on evidence and wide consultation with stakeholders involved (buse 2008). there is no evidence of a systematic process that was followed when the policy was developed. furthermore, there is no evidence of involvement of the disability movement in the policy formulation. the disability policy was developed when disability services were under the ministry of lands, resettlement and rehabilitation. this ministry no longer exists, which contributes to lack of ownership of the policy among stakeholders. the disability policy preceded publication of the uncrpd and the occupational justice framework; thus, the policy does not fully address the rights for occupational participation among persons with disabilities outlined in the latter. in march 2017, the namibian government publicised its intentions to review the disability policy (grn 2017a). in view of this it was considered important to conduct research that may contribute to the local evidence essential for disability policy formulation. occupational justice framework occupational justice is an evolving concept that focuses on the fair, civic, political and moral empowerment of people to participate in occupations, broadly defined as all human doings in context, that they need to live, to choose and find meaning in life. therefore, participation in occupations is a rights issue; every person has a right to participate in occupations that are meaningful and can positively contribute to their well-being and to society at large (hocking 2017). when circumstances external to a person hinder occupational participation the result is occupational injustice. the occupational justice framework was developed to provide an outline of the forces that interplay, leading to outcomes of either occupational justice or occupational injustice (townsend & polatajko 2013; wilcock & townsend 2000; 2009). components of the occupational justice framework and the participatory occupational justice framework include structural and contextual factors (stadnyk, townsend & wilcock 2010; whiteford & townsend 2011). structural factors are divided into underlying occupational determinants such as international or national policies and occupational instruments that enable participation in necessary or desirable occupations such as education, employment and technology. examples of contextual factors are national origin, ethnicity and disability. the occupational justice framework can be applied with individuals, groups, and communities (townsend & marval 2013). to date there is no literature on the applications of this framework in disability policy formulation. such an application has potential because policy forms part of underlying occupational determinants, and policies create an environment for promoting occupational justice or occupational injustice. critical disability theory critical disability theory was selected as the overarching theoretical framework to explain how circumstances may empower or enslave persons with disabilities. for this study, critical disability theory in particular was selected from a diverse family of critical theories derived from the work of max horkheimer (horkheimer 1982; hosking 2008). disability is a complex social construct that requires the social environment to be addressed beyond a person’s impairment. critical disability theory describes persons with disabilities as traditionally ‘oppressed’; this is because society treats them in ways that diminish their social, personal, physical, and financial well-being, and they are viewed as members of a socially disadvantaged minority group (charlton 1998; devlin & pothier 2005). suppression and marginalisation of persons with disabilities cannot be as dogmatically accepted as they appear to be in society. a critical disability theory lens provides a guide to examining and redressing oppressive social factors that tend to be unconsciously accepted. applicability of the eightfold path to disability policy analysis policy analysis is complex and time-consuming; thus, for this study, the eightfold path for policy analysis was used because it allows for a more structured approach to conduct policy analysis effectively (bardach 2012). the eightfold path for policy analysis has eight steps. step 1 defines the problem; step 2 involves assembling evidence; step 3 covers constructing alternatives; step 4 entails selecting criteria; step 5 involves projecting the outcomes; step 6 pertains to confronting trade-offs; step 7 entails decisions; and step 8 involves telling one’s story. the literature reveals that bardach’s approach to policy analysis has been used in social policies, income inequality–addressing policies, public health policy, energy sector policies and agricultural policies (bardach 2012; kanna 2006; weiner 2008). however, no study has been identified in which this approach was used in disability policy. the presence of complex policy-related barriers to occupational participation faced by persons with disabilities thus presents an opportunity for using this policy analysis approach. figure 1 shows the steps of the policy analysis approach. figure 1: eightfold path for policy analysis. research method and design this study was completed in two phases, both of which used a qualitative analytical study design. both phases used the policy analysis approach suggested by bardach (2000). the bardach approach uses a policy analysis strategy that seeks to generate recommendations for policy alternatives based on gathered evidence. the occupational justice framework provided the conceptual framework, and critical disability theory guided the underlying reasoning behind the study. using an outcomes matrix, proposed disability policy alternatives were presented against the set evaluative criteria. trade-offs for each policy alternative were presented using scores for each criterion. the evidence used in this study was based on the findings of two systematic studies that preceded this study, as well as literature findings (chichaya, joubert & mccoll 2017a; 2017b). ethical consideration ethics clearance to conduct the study was obtained from the humanities and social science research ethics committee of the university of kwazulu-natal (hss/0078/015d) and the ministry of health and social services research management committee in namibia. principles of respect for persons and beneficence and justice were upheld throughout the study. trustworthiness trustworthiness was ensured by carefully using two frameworks and an evidence matrix to assess the current policy and propose policy alternatives. data triangulation was achieved through the use of literature and three participant groups who provided responses on disability policy in namibia. in view of their experience conformability was addressed by two supervisory collaborators. they validated, reviewed and provided additional input in terms of what the first author had written. to enable transferability of findings to other settings, the study provides a description of the namibian disability policy environment. transferability is dependent on the context being considered. for example, transferability of the findings to other southern african countries with similar socio-economic, political and cultural backgrounds is more likely as opposed to western countries. phase 1: findings from the first study phase 1 used steps 1 and 2 of the eightfold path for policy analysis. step 1 focused on defining the disability policy problems and step 2 was for gathering evidence from the literature and the participants in namibia. the first study was a desk-based analysis of the namibian disability policy and a comparative analysis of disability policies of other southern african nations using the uncrpd as a yardstick. findings from the first study revealed occupational injustice embedded in the discourse of the namibian disability policy. four forms of occupational injustice were identified in the study. occupational marginalisation was present because of non-existence of evidence of active involvement of persons with disabilities in the formulation of the current disability policy in namibia. occupational deprivation persists as evidenced by the absence of state influence in ensuring accessible transport services for persons with disabilities. the latter are predominantly privately owned, and this results in the wide prevalence of inaccessible transport for persons with disabilities, even for those who can pay for transport. this significantly contributes to their isolation and occupational deprivation because they are denied opportunities to reach schools, workplaces and marketplaces for occupational participation. occupational alienation is a form of injustice that refers to a sense of isolation and absence of meaning in occupational participation. persons with hearing impairment, who for many years could only reach grade 10 and have had to settle for menial tasks, are at risk of occupational alienation because of an absence of grade 12 and tertiary education for learners with hearing impairments, which could lead to professional qualifications and better jobs. this can be traced to the disability policy not adequately addressing the educational needs of persons with hearing impairment. occupational inconsideration will be introduced more fully in the discussion to interpret some elements of the study findings. this concept will be proposed as a newly named form of occupational injustice. occupational inconsideration refers to injustice whereby those in authority or in disability policy decision-making positions knowingly or unknowingly disregard the centrality of occupation in formulating disability policies. furthermore, the policy predominantly contains the passive voice. this limits implementation because when the passive voice is used there is no identification of who should take the responsibility to act. the frequent use of the word ‘shall’ in the disability policy makes it ambiguous. this implicitly propagates a background for the proliferation of occupational injustice faced by persons with disabilities in namibia. namibia has not yet submitted the initial uncrpd report, which was due in 2010 (un 2018). this delay in submission of reports to some extent indicates lack of prioritisation to demonstrate domestication of the uncrpd. late submission is not unique to namibia but includes other southern african countries. lack of expertise and resources have been cited as reasons for slow advancement on disability policies (un 2018). phase 2: description of participants for phase 2 phase 2 of the study continued step 2 of the bardach approach (2012), focusing on gathering evidence. the second study provided evidence gathered through interviews with 15 persons with disabilities, 8 disability policy decision-makers, as well as 2 focus groups with a combined total of 17 occupational therapists who had an interest in and understanding of occupational justice. tables 1 and 2 describe the 15 persons with disabilities and decision-makers who participated in the study; table 3 describes the 17 occupational therapists. table 1: summarised description of the 15 persons with disabilities interviewed. table 2: summarised description of eight key informants (decision-makers). table 3: summarised description of 17 occupational therapists. phase 2: findings from the second study barriers to occupational participation viewed as occupational injustice experienced by persons with disabilities in namibia were divided into five categories: physical barriers; access barriers; expertise barriers; systemic barriers; and attitudinal barriers. there was a discrepancy of perceptions between disability policy decision-makers and persons with disabilities on occupational participation barriers experienced by persons with disabilities in namibia, as well as their suggested policy changes. persons with disabilities expressed more hindrances to occupational participation than those mentioned by disability policy decision-makers. there was far greater concurrence between perceptions of barriers among people with disabilities and occupational therapists. the discourse among persons with disabilities revealed a life of struggle and disadvantage. table 4 shows the barriers to occupational participation mentioned by each participant group. table 4: barriers to occupational participation mentioned by each participant group. evidence on perspectives of disability policy stakeholders and their lived experiences is a prerequisite when conducting policy analysis. in addition to barriers experienced by persons with disabilities in namibia, the participants suggested policy reforms. table 5 presents the policy decisions suggested by each participant group. table 5: recommended policy decisions to promote occupational participation among persons with disabilities. only 4 out of 17 recommendations for policy improvements were consistently mentioned by the three participant groups, namely, accessible communication formats for all disability types; awareness raising on disability issues; access to education; and vocational skills training. disability policy decision-makers had the least number of suggested policy improvements. the occupational therapists who participated in the study provided perspectives for creating an occupationally just environment that promotes occupational participation among persons with disabilities in namibia. findings constructing possible policy alternatives as suggested by bardach (2012), step 3 is the construction of policy alternatives. the first alternative to be considered is to maintain the current state of things. the generated policy alternatives, which are based on research of suggested policy options from literature and the respective responses of persons with disabilities, occupational therapists and disability policy decision-makers in namibia, fall into three main categories: access policy; support policy; and universal coverage policy. maintaining the current state if the current trends were to be maintained, the lives of persons with disabilities are not expected to improve. firstly, the occupational injustice embedded in the disability policy and the policy environment in namibia will remain; thus, the frustrations among persons with disabilities will continue to grow. secondly, a laissez-faire approach is not likely to bring improvements to the lives of persons with disabilities because historically they have been oppressed and denied equal opportunities compared to the general population. the government of namibia has signed the uncrpd, a reflection of commitment to improve the quality of life for persons with disabilities; thus, allowing the present conditions to prevail is equivalent to abandoning the commitment already made to the international treaty. hence, this alternative was not pursued further in this study. access policy to a greater extent the factors that restrict or limit persons with disabilities from participating in occupations of their choice are environmental. the access policy alternative seeks to address the environmental aspects that restrict persons with disabilities from participating in occupations in order to create accessibility to architectural infrastructure, information and services such as transport, education, employment, health and decent accommodation. in terms of the percentage of children in school in 2011, 69.2% of children with disabilities were enrolled, compared to 83.4% of children with no disabilities; 15.2% of children with disabilities had never attended school, compared with 4.7% among children with no disabilities (grn 2012). in 2012 there was a roughly 90.0% unemployment rate among persons with disabilities compared to 27.4% for the general namibian population (giz 2013). while namibia reported better access to health services for persons with disabilities than other services, the significant barrier to accessing health services was lack of transport and long travelling distances (eide et al. 2015). thus, a policy alternative that improves access to the mentioned services has merit for further analysis. support policy the support policy alternative focuses on the notion that persons with disabilities are disadvantaged and disability programmes are under-resourced; therefore more resources should be given to such programmes. supporters of this policy alternative argue that it is a proactive approach to address disadvantages and barriers uniquely faced by persons with disabilities in order to achieve equality with the rest of the population without disabilities (global rights 2005). currently namibia is one of the few countries that provides a cash-based disability grant or pension and provides free healthcare services specifically to persons with disabilities in state facilities. critics of the support policy alternative indicate that it fosters dependency on government and donor organisations, leaving persons with disabilities being construed as charity or welfare recipients with no capacity for contributions to socio-economic productivity of the country (isaacs 2005). in addition, this policy option may be considered to perpetuate societal attitudes that persons with disabilities are a special group that require special treatment and charity; this defeats the goal of inclusion (sheldon 2010). this policy alternative has merit to be considered for further analysis on its probable outcomes and trade-offs. universal coverage policy from a universal coverage policy perspective, disability is viewed as one of many variables of the population; the structure of society should thus be targeted to provide for universal coverage of all members of the society. this policy alternative seeks to ensure that all persons with disabilities are catered for in the general community development policies. if this policy alternative is fully pursued, then disability may eventually cease to be a policy category (bickenbach 2014). those in support of universal approaches highlight that this is the only forward-thinking approach that allows for ensuring that services, products and environments are accessible and inclusive to the broadest population including persons with disabilities from the onset, thus eliminating the need for later modifications or adjustments to accommodate persons with disabilities or disability-targeted programmes (story 2001). critics of the outset use of the universal coverage policy approach describe it as effective in a ‘utopian’ society; it does not address widespread imbalances and inequalities that are already being faced by persons with disabilities, which require corrective measures – hence the need for disability-targeted approaches as a means to achieve equality until such time as an ideal society is achieved (sheldon 2010). challenges still exist on how governments can target persons with disabilities but still abide by the principles of ‘universalism’. disability is a complex phenomenon; thus, despite the presence of the universal declaration of human rights, there was need for the development of the uncrpd. in addition affirmative action approaches remain relevant to target groups of persons who were formerly disadvantaged or marginalised to ensure their inclusion and equity. this policy alternative is worthy of further analysis. setting evaluative criteria evaluative criteria are mental standards for evaluating the probable outcomes of identified policy alternatives; this is the fourth step of the eightfold path to policy analysis (bardach 2012). the evaluative criteria that were set for this study were based on evidence obtained from the following data sources: disability policy documents; persons with disabilities; occupational therapists; and disability policy decision-makers in namibia. furthermore, the experiences and understanding of the authors of the disability policy environment and local context, as well as the ethos of the study, influenced the evaluative criteria that were selected. the latter were: justice; inclusion; affordability; and political acceptability. explicitly providing these criteria allows readers to have a clear understanding of the reasons behind suggested policy options and recommendations. justice was selected as the first criterion in this study because it is about fairness and thus linked to rights of persons with disabilities as equal citizens. rights-based criteria are favourable in selecting ‘better’ policies (bardach 2012). in addition, justice falls within the domain of critical theory whereby the targeted outcomes include emancipating people from situations that suppress their rights. thirdly, justice, as a criterion, is compatible with the human rights disability model used in this study and the unrcpd principles. lastly, the concept of justice is embedded in the occupational justice framework – the conceptual framework for this study. thus, outcomes of policy alternatives were judged on how fair and unbiased they were towards permitting or promoting persons with disability to participate in occupations of their need and choice. the second criterion is inclusion, which means determining whether implementation of identified disability policy alternatives results in persons with disabilities being accommodated in all spheres of society with clear involvement and participation in decision-making about their lives. this criterion satisfies the motto: ‘nothing about us without us’. furthermore, it encompasses the consideration of contextual factors that predispose people to exclusion as outlined in the occupational justice framework such as gender, disability or ethnicity. the third criterion, affordability, was used to judge the resultant disability policy outcomes when suggested policy alternatives were assessed on the first two criteria of justice and inclusion. this means that an alternative with an outcome that is just and inclusive was further assessed in terms of the cost of resources required. affordability depends on the type of economy, which constitutes the underlying occupational determinants of the occupational justice framework. income status or wealth is also among the contextual factors that can contribute to outcomes of either occupational justice or injustice. policy alternatives that are unaffordable will not be executed even if they meet the first two criteria. political action is a prerequisite for the implementation of any disability policy alternatives. therefore, political acceptability was the fourth criterion used to judge the projected outcomes of policy alternatives after satisfying the previously mentioned three criteria. political acceptability focused on assessing the political will for the implementation of policy options with least resistance. outcomes matrix table 6 presents a tabulated outcomes matrix grid to project the probable outcomes of each policy alternative when subjected to the set evaluative criteria. this is step 5 of the bardach approach. the matrix shows the suggested policy alternatives in the rows and evaluative criteria in the columns (bardach 2012; kanna 2006). the projected outcomes for each policy alternative (access, support and universal coverage) were measured against the extent to which they satisfied the four evaluative criteria (justice, inclusion, affordability and political acceptability). all the selected evaluative criteria were given equal weighting; this was informed by the literature on the basis that if any outcome of a policy alternative would not satisfy any of the evaluative criteria, that policy option would not be useful. thus, the higher the score, the more it meets the evaluative criteria; the policy option would therefore be most likely to address the identified needs of persons with disabilities. conversely, the lower the score, the less it addresses their needs. a common qualitative interval measurement scale was used for assessing evaluative criteria as shown below: 3 = satisfies criteria: this means that the projected outcome of the alternative meets criteria to a substantial extent. 2 = moderately satisfies criteria: this means that the projected outcome of the alternative meets the criteria to a modest extent. 1 = minimally satisfies criteria: this means that the projected outcome of the alternative meets the criteria only to a negligible extent. 0 = does not satisfy criteria: this means that the projected outcome of the alternative completely fails to satisfy the criteria. table 6: outcomes matrix illustrating policy alternatives and trade-offs for each evaluative criterion. the higher the total score, the fewer trade-offs for the particular policy alternative, hence the more favourable it is. table 6 shows that the policy alternative for access policy had the fewest trade-offs (10/12); the alternative of support policy had the most trade-offs (5/12). following is an account of the probable outcomes of each policy alternative, and the trade-offs, based on how each alternative fared on evaluative criteria. discussion probable outcomes and trade-offs considering the trade-offs of probable outcomes if policy alternatives were to be implemented is step 6 of the bardach approach. the following discussion presents the probable outcomes for each disability policy alternative and the trade-offs when judged based on each evaluative criterion. alternative 1: access policy – outcomes and trade-offs seven out of the 12 barriers to occupational participation identified by stakeholders have to do with access, which places it high in priority. similarly, the suggested policy interventions were based on improving access of persons with disabilities to transport; information; health services; education and training; employment; livelihood activities; and leisure activities. thus, policy interventions that directly address access are relevant in addressing the needs of persons with disabilities in namibia. justice: access policy directly addresses the need for fairness in enabling persons with disabilities in namibia to participate in occupations that are meaningful to them on an equal basis with other citizens. this policy alternative therefore satisfies the justice criterion. inclusion: implementation of access policy is expected to foster inclusion because, by improving access to services and socio-economic spheres, persons with disabilities are able to participate in occupations that they choose and find meaning in. furthermore, universal designs can be addressed under the access policy enhancing inclusion. this policy alternative satisfies the inclusion criterion. affordability: considering the current economic challenges, and the budget cuts instituted by the namibian government, implementation of this alternative will carry a financial implication. however, the establishment of the department of disability affairs in the office of the vice president with its own budget provides for annual budgeting. additionally, funding for implementing access policy can be a shared responsibility among other line ministries such as ministries responsible for education, transport, housing and labour. therefore this alternative moderately satisfies the affordability criterion. political acceptability: the establishment of the department of disability affairs in the office of the vice president in 2015 indicates a commitment to specifically addressing the needs of persons with disabilities in namibia. the department has initiated plans for disability mainstreaming in other sectors; therefore access policy is most likely to have some acceptance and support from politicians. this alternative is considered to moderately satisfy the criterion of political acceptability. alternative 2: support policy – outcomes and trade-offs the government of namibia has instituted some initiatives that are in line with support policy (e.g. disability grant and free health services for persons with disabilities). in 2015 the coverage of the disability grant was 65.0%, up from 24.0% in 2012 (grn 2016). these support interventions specifically target persons with disabilities. justice: a policy that is entirely focused on a support policy perspective. this policy alternative can be considered to redress inequality by providing resources specifically for persons with disabilities to some extent; however, this is not primarily based on justice but on welfare. therefore this alternative minimally satisfies the justice criterion. inclusion: this policy alternative does not favour inclusion because it portrays persons with disabilities as a special population that requires special treatment and charity. persons with disabilities do not want to be perceived as those who are recipients of welfare assistance. they want to be perceived as equal, economically productive citizens. this alternative minimally satisfies the inclusion criterion. affordability: this policy alternative will demand more financial resources in the form of providing more free services for persons with disabilities. payment of such provisions will be mainly derived from taxpayers. the government of namibia has increased the flat-rate grant of nad 100.00 (about us $8.30) to make it nad 1200.00 (about $100.00) per month for the financial year 2017 and 2018 (grn 2017b). this percentage increase is an indication that government is not focused on huge spending on welfare. in general the 2017 and 2018 budget for the social sector has been increased while other sectors have experienced budget cuts in line with the harambee prosperity plan, which emphasises that no one must be left behind (grn 2016; 2017b). therefore this alternative moderately meets the affordability criterion. political acceptability: adopting a support policy as an alternative for addressing the needs of persons with disabilities may not have much political acceptability because of the perceived risk of dependency. furthermore, taxpayers will not be expected to be very supportive of this policy alternative as it will be funded by them. previously there were reports of mismanagement of resources by organisations for persons with disabilities, which led to closure of their offices; the donors and government declined to provide further support to such organisations (thihenuna 2015). this implies the need for reviewing the system of policy implementation. furthermore, the government cited lack of sustainability and creating dependency and thus did not accept a 2004 civic group proposal for the introduction of a cash-based basic income grant, which was to be given to all namibians unconditionally (melber 2016). this policy alternative minimally satisfies the political acceptability criterion. alternative 3: universal coverage policy – outcomes and trade-offs this policy alternative seeks to encompass the broadest diversity of the population in which persons with disabilities are considered as part of a diverse population. this eliminates the need for a disability-specific policy. however, since political independence, namibia has focused on redressing the results of the apartheid regime such that minority groups, and previously disadvantaged ethnic groups, are given preference. this is opposite to the universal coverage alternative. justice: the universal coverage disability policy option is based on the rights of every person and the creation of a just society for a diverse population. therefore it fully satisfies the justice criterion. inclusion: the universal coverage policy alternative ensures that persons from diverse backgrounds, including persons with disabilities, are equally included in society and therefore satisfies the criterion of inclusion. affordability: significant resources will be required for the implementation of this policy alternative, cutting across the socio-economic sectors, addressing the needs of diverse populations of all age groups from rural and urban areas. despite namibia being graded as an upper middle income earning country, the current economic challenges are considered to translate into this alternative minimally satisfying the criterion of affordability. political acceptability: while the universal coverage approach has ideal outcomes, its full implementation will not receive much support from the government. firstly, persons with disabilities have been historically disadvantaged and a redress is required. secondly, the recent establishment of the department of disability affairs to address the concerns of persons with disabilities will cease to be relevant if a universal approach is adopted; thus, government is not likely to make a huge leap in policy change. it is reasonable to expect the current namibian government not to fully accept this policy alternative; thus, it minimally satisfies the criterion of political acceptability. discussion on steps 7 and 8 of the bardach approach steps 7 and 8 of the bardach approach entail deciding on and telling the story, respectively. detailed application of these two steps is beyond the scope of this study. firstly, this is because the study focused on generating evidence that can be used for disability policy formulation in namibia by presenting different policy alternatives and their trade-offs without being prescriptive on a single disability policy alternative (deciding). secondly, telling the story (step 8) involves developing a communications plan, going back to the field to engage different stakeholders with the results and seeking their buy-in on a selected disability policy alternative. summary of discussion for steps 1–6 steps 1 and 2 (defining the problem and gathering evidence) were addressed in phases 1 and 2. in step 3, the following three disability policy alternatives were generated: access policy, support policy and universal coverage policy. four evaluative criteria were set in step 4: justice, inclusion, affordability and political acceptability. for step 5 an outcomes matrix was presented to project the probable outcomes when each policy alternative is judged based on the set evaluative criteria. in step 6 a discussion on the trade-offs for each disability policy alternative is provided concerning promotion of occupational justice using a critical disability theory lens. the access policy alternative had the fewest trade-offs – that is, the highest score – followed by the universal coverage policy alternative and lastly the support policy alternative. the policy analysis has prompted naming a new form of occupational injustice as occupational inconsideration. findings from the policy documents and participants in phases 1 and 2 of the study reveal a disparity between perceptions of disability policymakers and persons with disabilities on the occupational needs of persons with disabilities. this disparity results in policymakers designing and approving disability policies that are inconsiderate of the need to ensure occupational participation among persons with disabilities. the adopted dictionary definitions for inconsiderate include ‘without due regard for the rights or feelings of others’; ‘insensitive’; ‘ill-advised’. occupational inconsideration thus exists when disability policymakers design policies or services targeting persons with disabilities without carefully considering how occupational participation for the intended target audience will be achieved. further research of this concept, including involvement of a broader range of stakeholders in disability and rehabilitation services, is necessary. conclusion the purpose of the study was to develop disability policy alternatives and present their probable outcomes and trade-offs based on the occupational justice framework and the eightfold path to policy analysis. three disability policy alternatives emerged from the evidence in this study: access policy; support policy; and universal coverage policy. the access policy is more likely to result in achievement of fairness and increased occupational participation among persons with disabilities in namibia in the present context. these findings highlight the relevance of introducing occupational justice into disability policy formulation. acknowledgements this article is part of a larger study conducted towards a phd qualification by the first author, who is financially supported by a phd scholarship from the university of kwazulu-natal. the authors would also like to acknowledge and thank the 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townsend. e.a., 2009, ‘occupational justice’, in e.b. crepeau, e.s. cohn, b.a. boyt schell (eds.), willard spackman’s occupational therapy, pp. 192–199, lippincott williams, baltimore, md. abstract introduction research methods results discussion conclusion acknowledgements references appendix 1 appendix 2 about the author(s) susan shore department of physical therapy, azusa pacific university, united states citation shore, s., 2017, ‘the long-term impact of wheelchair delivery on the lives of people with disabilities in three countries of the world’, african journal of disability 6(0), a344. https://doi.org/10.4102/ajod.v6i0.344 original research the long-term impact of wheelchair delivery on the lives of people with disabilities in three countries of the world susan shore received: 16 nov. 2016; accepted: 20 may 2017; published: 08 sept. 2017 copyright: © 2017. the author licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: lack of access to mobility for people with disabilities, particularly in lessresourced settings, continues to be widespread. despite challenges to wheelchair delivery, the benefits to health, employment, social integration and life satisfaction are apparent. objectives: previous studies have explored the impact of receiving a wheelchair on the lives of the users through cross-sectional or short-term longitudinal analysis. the current study was undertaken to evaluate whether previously reported changes were sustained after 30 months of use, and whether results varied between two differing models of a wheelchair. method: one hundred and ninety-one subjects from peru, uganda and vietnam received one of two models of wheelchair provided by the free wheelchair mission. using interviews to record survey results, data were collected at the time the wheelchair was received and following 12 and 30 months of use. variables of overall health, employment, income and travel were explored through non-parametric analysis. results: there was a significant improvement in overall health and distance travelled after 12 months, but these changes were no longer significant by 30 months (friedman test for overall change, p = 0.000). employment status showed a small but significant increase at 12 and 30 months (cochran’s q, p = 0.000). reported income increased slowly, becoming significantly different at 30 months (friedman test, p = 0.033). there was no association between the model of wheelchair received and the incidence of pressure ulcers, pain or maintenance required. there was higher satisfaction with the gen_2 wheelchair at 12 months (p = 0.004), but this difference was not apparent by 30 months. overall wheelchair satisfaction and maintenance levels were favourable. conclusion: while overall health status, and distance travelled into the community fluctuated over time, receipt of one of two models of a wheelchair in less-resourced settings of the world appears to have a positive sustained impact on employment and income. further investigations should be carried out to confirm these results and explore the factors responsible for fluctuating variables. this study affirms the importance of long-term follow-up of outcomes associated with wheelchair distribution in less-resourced environments. introduction with the signing of the united nations convention on the rights of persons with disabilities (uncrpd) in 2006, mobility, and the provision of assistive technology for those who lack it, was recognised as a human right (borg, larsson & östergren 2011). despite the efforts of both national and international government and non-governmental organisations to provide access to mobility for the world’s people with disabilities, approximately 85%–95% of those who need a wheelchair do not have one (who 2008). this is accompanied by diminished access to education, employment and medical care (who 2011). the challenges related to wheelchair provision in less-resourced countries include limited state services to systematically identify those in need, a lack of medical and rehabilitation services to accompany assistive technology (tasiemski, priebe & wilski 2013), and a shortage of personal finances to afford it (mitra, posarac & vick 2012). the shortage of wheelchairs is compounded by the lack of accessibility in construction and transportation services. physical barriers for wheelchair use include narrow doorways, steep ramps and inaccessible bathrooms (pearlman et al. 2006). there is an additional requirement to be able withstand extreme weather and poor road conditions. this is exemplified by the report of tasiemski et al. (2013) that travel time from the residence of subjects with spinal cord injury to the nearest rehabilitation centre averaged 4.29 h in india, 2.77 h in vietnam and 3.02 h in sri lanka, thus limiting the opportunity for service acquisition. access to a wheelchair has been shown to impact both the social and health needs of the user. in a review of the provision of services for children with disabilities, both children and parents placed the highest priority on independence, and the psychosocial outcomes associated with wheelchair interventions. this included the development of social skills and the ability to participate in broader society (bray et al. 2014). rousseau-harrison and rochette (2013) found that acquiring a wheelchair tended to improve a child’s participation in social relationships, self-care, play, and mobility. women in indonesia, who received a wheelchair in conjunction with the who eight-step approach to wheelchair distribution, reported a better quality of life than those on a waiting list (toro et al. 2016). although there was no difference in the number of pressure sores or employment status between those who received a chair and those on the waiting list, both men and women reported improved environmental health scores (health and financial resources). people with disabilities are at increased risk for lower income and higher poverty levels (mitra et al. 2012; mizunoya & mitra 2013), made worse by a decreased ability to convert what is available into an adequate standard of living (shore & juillerat 2012). a cyclic relationship exists between disability and poverty, accompanied by social and cultural exclusion and denial of opportunities for economic development (harkins, mcgarry & buis 2012). conversely, patients who are employed after spinal cord injury have increased life satisfaction (schonherr et al. 2005; van koppenhagen et al. 2008) associated with increased opportunity for socialisation, productivity and income. while the causes of poverty in this population are multi-faceted (eide & ingstad 2013), increased mobility through provision of a wheelchair appears to have a positive impact. twelve months after receipt of a wheelchair, 519 users in india, chile and peru reported a small but statistically significant increase in health, mood state, independence and employment (shore & juillerat 2012). wheelchair provision in ethiopia was accompanied by a shift in time expenditure towards economic productivity, with less time spent on begging and more time spent on other income-generating activity (grider & wydick 2015). the challenges and benefits of wheelchair provision continue to be studied even as more models of both chairs and service provision emerge. as demonstrated by visagie et al. (2015), results vary depending on function, durability and fit of the wheelchair, making it imperative to continue to monitor outcomes. while previous studies have examined the variables of employment, health and life satisfaction following receipt of a wheelchair in less-resourced countries, they have used either a cross-sectional or a short-term (one year) longitudinal approach. the current study was undertaken to assess whether reported changes in previous studies were both verified and sustained over a 2.5 year period, and whether the model of wheelchair played a role in the results. research methods design the current study was designed by the free wheelchair mission (fwm) organisation, modifying surveys used in previously published studies (shore 2008; shore & juillerat 2012). the survey questions used are listed in appendices 1 and 2. approval for the study was obtained through the organisation’s internal review process using methodology similar to that previously reported, with local partners ensuring that cultural norms, ethics and policies were adhered to. following collection of data, it was released to the author for analysis. two hundred prospective wheelchair recipients in each of three countries (peru, uganda and vietnam) were identified by local affiliates of the fwm using community social workers and databases. subjects were given the option to participate in the study, but received a wheelchair at no cost, regardless of participation. because 57.2% of all participants reported a maximum of 3rd grade or lower education (including 37.8% with no formal education), willingness to participate was considered consent. all volunteers were accepted without exclusion, and parents were allowed to complete the survey on behalf of their children. independent contractors were hired and trained in survey procedures by employees of the fwm. the contractors were nationals, who had previously worked for national and international firms, and were fluent in local languages and customs. they were responsible for translation of the surveys from english into spanish/vietnamese/swahili. subjects were interviewed before they received the wheelchair, and at 12 and 30 months afterwards. the wheelchairs subjects received one of two models of wheelchairs based on availability and choice of the local affiliate, rather than user characteristics. the wheelchairs are products of the fwm, designed for 3–5 years of use in rugged terrain when appropriately maintained (fwm 2016). they are manufactured in china and shipped to local partner organisations around the world where they are assembled and distributed. each wheelchair is distributed with a flat covered 50 mm polyurethane foam cushion, a wrench, air pump and a patch kit for tyres. included with each chair is a written manual (in spanish, vietnamese and english) describing proper use and care, including safe transfers, exercises for strength and range of motion, and the prevention of pressure ulcers. it includes contact information for the partner organisation, should replacement parts be required. for the gen_2 wheelchair, local affiliates were expected to measure the user, choose the size of wheelchair and adjust it for fit. for both gen_1 and gen_2 users, they provide basic training to the wheelchair user or family members at the time the chair is given. wheelchairs are provided free of charge to recipients, made possible through local and national fundraising efforts. the gen_1 wheelchair (figure 1) is a one size (table 1), non-adjustable chair constructed with a polypropylene seat and back on a rigid frame. it has 8-inch natural rubber castors in the front and 24-inch medium tread pneumatic tyres in the back. it includes a five-point adjustable over-the-shoulder harness for postural support as needed, independent steel-locking rear wheel brakes with extended length handles, and one large adjustable footrest. it weighs 17.6 kg (38.8 pounds). figure 1: the fwm gen_1 wheelchair. table 1: dimensions of wheelchair models and sizes. the gen_2 wheelchair (figure 2) is fully adjustable, approved by the united states federal drug administration, and comes in three sizes (table 1). it has two swing-away footrests, a rigid frame and a rigid moulded seat. leg rests can be individually adjusted to accommodate differing leg lengths and angled as needed. seat depth and back height are customisable to fit the user in all chairs. rear tyres are 26-inch medium tread pneumatics with 3 degree camber; front tyres are large rubber castors. brakes are independent, steel-locking with extended length handles. net weight of the chair is 16.5 kg (36.4 pounds). the seat is attached to a steel frame by polypropylene webbing straps secured with parachute cord. the backrest is comprised of eva foam padding inside a water-resistant, fire-retardant nylon cover. figure 2: the fwm gen_2 wheelchair. subjects wheelchair recipients from three different countries and continents participated in the study: peru, uganda and vietnam. the study began with 596 subjects, with approximately 33% from each of three countries. no data were kept on those who chose not to participate. demographics of the original sample by country are included in table 2. at the end of 30 months (the final survey), subjects were excluded who did not complete all three surveys or who reported using more than one wheelchair. following attrition and exclusion, the demographics of the study sample (n = 191) are seen in table 3. table 2: demographics of original sample by country. table 3: demographics of study sample. data analysis following the interviews, survey data were entered electronically by local contractors into survey monkey®. results were exported into spss pasw 23.0 in the united states. all detailed names and addresses were kept in separate files by the fwm. analysis was completed using subject numbers only. data from all three countries were combined into one file for analysis, with subject numbers being followed across three surveys. results were compared to individual country data and can be assumed to conform to final patterns unless otherwise reported. descriptive data (means, medians, standard deviations, interquartile range and frequencies) were obtained from 191 subjects at baseline, 12 and 30 months. dichotomous variables (employment, presence of pain, presence of pressure ulcers in the previous 12 months) were analysed across the three time points using cochran’s q with mcnemar’s test for post hoc review at a significance level of 0.05. the friedman test was used to assess differences across surveys for ordinal data (overall health, distance travelled per day and family income) with wilcoxon signed rank used for post hoc analysis. wilcoxon signed rank was used to assess differences in rank data collected at only two time periods (satisfaction with the wheelchair at 12 and 30 months, and independence level at baseline and 30 months). pearson chi square test for independence was performed using crosstabs to assess the association between the model of wheelchair received with the presence of pressure ulcers, employment, pain, mechanical breakdown, and satisfaction at 12 and 30 months. the significance level for all tests was set at 0.05. results subjects from the original sample (596 subjects), the death rate was 18.37%, greatest in vietnam. at 30 months, 5.56% of participants could not be located, and 11.87% of wheelchairs had been sold, stolen or given away. on the 30-month survey, those subjects who reported having received or purchased an additional wheelchair from other sources during the course of the study were excluded from analysis to avoid confounding results. subjects who did not complete surveys at all three time periods were also excluded. together, these exclusions accounted for 32.15% of the original data. therefore, 191 subjects (32.05% of the original sample) made up the study sample; subjects in peru comprised over 50% of the study sample. health status while the overall health ranking (0–10) changed significantly over time (freidman test, p = 0.000), post hoc analysis indicated that the improvement in health was evident from baseline to 12 months (wilcoxon, p = 0.000), but returned to its original state by 30 months. there was no significant change in pain or the incidence of pressure ulcers across the three surveys (table 4). table 4: health and employment status over time. employment, income and travel there was a small but significant increase in the reported rate of employment (cochran’s q, p = 0.000) (table 4). the change was greatest from baseline to 12 months and was maintained through 30 months (mcnemar’s, p = 0.000). the increase in employment was accompanied by an increase in family income from baseline to 30 months (table 5) (friedman test, p = 0.033). the change accumulated slowly and was not significant until the 30-month mark (wilcoxon baseline vs 30 months, p = 0.024). this increase applied to peru and uganda, but not to vietnam. table 5: family income over time. there was no reported change in overall independence. the daily distance travelled into the community changed over time (friedman test, p = 0.000). based on post hoc analysis, there was a pattern of increase by 12 months (wilcoxon, p = 0.000) but this difference was no longer sustained by 30 months (table 6). of those who reported travel greater than 500 metres/day, there were 16.3% of the sample at baseline, 23.5% at 12 months and 19.4% at 30 months. table 6: distance travelled over time. model of wheelchair and satisfaction a total of 188 subjects recorded the model of wheelchair they received (table 3) and 108 of them (57.4%) responded to the question regarding wheelchair breakdown. reasons for incomplete data on this question are unclear and not assumed to represent a lack of breakdown. of those using the gen_1 model, 7.9% (6/76) reported breakdown during the previous six months compared to 6.2% (2/32) of those using the gen_2 model. there was no significant relationship (pearson chi-square test for independence) between the model of the wheelchair received and the presence of pressure ulcers, pain, employment or wheelchair breakdown. there was a difference in satisfaction between gen_1 and gen_2 models at 12 months (pearson chi square p = 0.004). satisfaction with the gen_1 chair averaged 7.71/10; satisfaction with the gen_2 chair averaged 8.09. this difference in satisfaction was no longer significant after 30 months (7.65 for gen_1 vs. 7.67 for gen_2). discussion subjects although approximately one-third of the original sample came from each of three countries there was a difference in many of their characteristics (table 2). based on descriptive data, the sample from vietnam was the eldest, had worse health and nutrition ratings, and went out of the house less frequently, appearing more debilitated. this may account for the larger than expected death rate and underscores the vulnerability of this population, particularly in less-resourced environments. health status the significant change in health at the one-year mark is consistent with results of the former study by shore and juillerat (2012) in chile, vietnam and india. they reported improved overall health after 12 months of wheelchair use, as did toro et al. (2016) in indonesia after 6 months of wheelchair use. however, the fact that improvement in the current study was not sustained to 30 months may be linked to factors beyond the receipt of the wheelchair (e.g. rehabilitation intervention, change in nutritional status) or linked to the pattern of skin breakdown, which, in the current study was non-significant, but appeared to move in a similar direction. these factors are worthy of future investigation. employment, income and travel the small but statistically significant change in employment is similar to that of previous reports (grider & wydick 2015; shore & juillerat 2012). in the current study, subjects described their employment as largely self-directed businesses such as selling candy, lottery tickets or food, often from their home. employment was not always full-time; it also included selling items on weekends. thus, the increase in employment should not be conceptualised in the usual full-time sense. there was, however, an accompanying rise in family income in uganda and peru, corroborating the added employment. as the baseline age in vietnam was older (over 65 years), it is not surprising that they did not experience the same increase. while increased age does not preclude employment, the likelihood of having the necessary level of health and stamina diminishes over time. in the baseline study sample, 47.1% of subjects reported that income was not sufficient for daily necessities (table 5). this number declined to 36.1% by 30 months, while the number reporting sufficient income increased. this represents an important change in income earning capacity. the fact that this number remained at 36.1%, however, underlines the high risk of poverty in this population. the rise in income was not significant at 1 year and would not have been visualised had the study ended at 12 months as in previous studies. perhaps because the reported employment includes part-time and small self-employed enterprise, the change in income accumulated slowly, becoming significantly reported only at 30 months. whether because of the added mobility of a wheelchair or the added stimulus of personal recognition and intervention, the potential for change in lifestyle is important. in terms of mobility, the pattern of significant improvement at 12 months but diminishing by 30 months follows the same trend as health and incidence of pressure ulcers. the reasons for this are unclear, but warrant further study. compared to the mobility characteristics of residential manual wheelchair users in the united states (tolerico et al. 2007), the changes in the current study are small. their subjects typically travelled 2457 metres per day during an average 8.3 h of use. the difference may be because of better roads and more accessible buildings in the united states, societal norms about function or protection of those with disability or characteristics of the wheelchairs used. model of wheelchair and satisfaction although there has been discussion in the literature over assumed health risks associated with long-term use of non-adjustable wheelchairs, this study found no sustained difference in the incidence of reported pressure ulcers or pain between the two models. it did not measure changes in posture or wheelchair manoeuvrability, which may impact long-term health and function. because the two wheelchair models were not distributed at baseline based on levels of functional independence or overall health status, it is not possible to fully assess the effect of the wheelchair model on these variables. it is unclear why higher satisfaction with the gen_2 chair was expressed at 12 months while there was no difference in satisfaction between the two models at 30 months. chair maintenance and health characteristics were not statistically different by model. there were equal subject numbers at both times, and the percentage using each model was similar (table 3). further exploration of this result is warranted in future studies. although marchiori et al. (2015) reported similar satisfaction between users of two models of manual wheelchairs subjects commented that weight and durability were important characteristics. there was a trend towards higher satisfaction reported by jefferds et al. (2010) in 13 recipients in india who used a prescribed wheelchair, which was lighter compared to a 50-pound depot-style chair. in the current study, the gen_2 chair was lighter, which may account for better satisfaction at 12 months; it is unclear why this was not sustained at 30 months. fitzgerald et al. (2005) found that user satisfaction was linked to the number of wheelchair repairs. in a convenience sample of 130 participants, 26% reported a wheelchair repair in the previous 6 months and 27% had tyre repairs. wheelchairs had an average age of 3.1 years, similar to the current study. although mileage was not tracked, subjects used their chairs an average of 10.9 + 5.0 h per day. subjects in the current study reported low rates of wheelchair repair, despite assumed poor road and transportation conditions. however, the distance travelled is much lower than in fitzgerald’s study, perhaps accounting for the difference in repair rates. the lower distance in the current study may be because of road and sidewalk conditions being worse than in the united states, cultural norms about disability or a function of other wheelchair characteristics. as reported repair rates are low, the wheelchair models in the current study appear sufficiently robust for activity levels used by the population sample in this environment. overall satisfaction remained favourable. limitations because wheelchair recipients were interviewed for self-reported data, the possibility that answers were given to impress or gain approval from survey contractors cannot be excluded. no formal reliability testing of the survey has been carried out, and the study did not use controls for comparison, limiting generalisability. however, results for the final study sample were largely consistent across three countries and continents, adding validity to the results. the subjects in peru comprised more than 50% of the study sample. they tended to be from metropolitan areas and 75% of them received gen_1 wheelchairs. it is not known how this may have influenced the data. cultural biases in the reporting of data cannot be ruled out. varying perceptions exist about the causes of disability, and the acknowledgment of pain, health and income. future studies should explore this contribution to the data. conclusion in three different countries on three different continents of the world, receipt of a wheelchair was associated with increased employment and income after 30 months of wheelchair use. health status and daily distance travelled fluctuated over time. satisfaction with the two chair models was generally favourable. despite the more positive ratings of the gen_2 chair at 12 months, there was no associated difference in any of the variables studied, and the higher ratings were no longer apparent at 30 months. further investigation should be carried out to confirm these results and explore the factors responsible for fluctuating variables. this study affirms the importance of long-term follow-up of outcomes associated with wheelchair distribution in less-resourced environments. acknowledgements the author thanks dr kori westfall, dr annette karim and molly brodersen for their input and support during the writing of this article. competing interests the author declares that there is no financial 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visagie, s., mlambo, t., van der veen, j., nhunzvi, c., tigere, d. & scheffler, e., 2015, ‘is any wheelchair better than no wheelchair? a zimbabwean perspective’, african journal of disability 4(1), art. #201, 1–10. https://doi.org/10.4102/ajod.v4i1.201 world health organization (who), 2008, guidelines on the provision of manual wheelchairs in less resourced settings, who press, world health organization, geneva. world health organization (who), 2011, world report on disability, world health organization, geneva, viewed 01 december 2016, from http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf appendix 1 survey questions at baseline a. demographic data date of interview and interviewer country of residence home setting (rural, village, large metropolitan) age, gender, height, weight education level read/write (no, basic level, advanced) employment (yes/no) if yes, occupation medical diagnosis or reason for use of wheelchair annual family income (less than sufficient to pay for basic necessities, just sufficient, more than sufficient) previous wheelchair? (yes/no) reasons for no current wheelchair (lack of money, no wheelchair available, wheelchair broken) b. mobility main form of transport (carried, crawl, scooter, crutches, bedridden) metres travelled in typical day (sum of carried, walking, riding, etc.) (less than 10, 9–99, 100–499, 500–999, at least 1 km) c. health status overall health (1–10; 1 = very poor, 5 = average, 10 = very good) availability of medical care in your area (available and affordable, available but i can’t get there, available but not affordable, there is no medical care in my area) have you had a skin ulcer in the past 12 months? (yes/no) if yes, how many? describe their location do you have pain on a regular basis? (yes/no) if yes, severity, location how often do you have adequate nutritious meals? (adequate quantity and nutrients every day, adequate quantity but not nutrients every day, neither adequate quantity and nutrients every day) using numbers from 1 to 10, rate your level of overall dependence on a caregiver for mobility and daily function (1 = total dependence, 10 = total independence) appendix 2 survey questions at 12 and 30 months a. demographic data date of interview and interviewer country of residence model of fwm wheelchair received (gen_1, gen_2) still have and use fwm chair? if not, why? (30 month only) employment (yes/no) if yes, occupation annual family income (less than sufficient to pay for basic necessities, just sufficient, more than sufficient) b. mobility main form of transport (carried, crawl, scooter, fwm wheelchair, walk, bedridden, other wheelchair) metres travelled in typical day (sum of carried, walking, riding, etc.) (less than 10, 9–99, 100–499, 500–999, at least 1 km) c. health status overall health (1–10; 1 = very poor, 5 = average, 10 = very good) have you had a skin ulcer in the past 12 months? (yes/no) if yes, how many? describe their location do you have pain on a regular basis? (yes/no) if yes, severity, location using numbers from 1 to 10, rate your level of overall dependence on a caregiver for mobility and daily function (30 months only) (1–10; 1 = total dependence, 10 = total independence) d. wheelchair maintenance fwm wheelchair broken down within the last six months? (yes/no) what parts of the wheelchair had a problem? (not including putting air in tyres) front wheels, rear wheels, brakes, metal frame, plastic chair, cushion, seat rest, back rest, foot rest, harness e. satisfaction rate your overall satisfaction with the fwm wheelchair (1–10; 1 = very dissatisfied, 10 = very satisfied) abstract introduction methods results discussion acknowledgements references about the author(s) vladimir y. pente sightsavers, cameroon country office, yaounde, cameroon anita jeyam sightsavers, haywards heath, united kingdom stevens bechange sightsavers, senegal country office, dakar, senegal emma jolley sightsavers, haywards heath, united kingdom anne roca sightsavers, haywards heath, united kingdom sandra r. dossou sightsavers, cameroon country office, yaounde, cameroon khady ba sightsavers, senegal country office, dakar, senegal joseph oye sightsavers, cameroon country office, yaounde, cameroon salimata bocoum sightsavers, senegal country office, dakar, senegal laurene leclercq sightsavers, haywards heath, united kingdom elena schmidt sightsavers, haywards heath, united kingdom citation pente, v.y., jeyam, a., bechange, s., jolley, e., roca, a., dossou, s.r. et al., 2024, ‘electoral participation of people with and without disabilities in urban communities in cameroon and senegal’, african journal of disability 13(0), a1399. https://doi.org/10.4102/ajod.v13i0.1399 original research electoral participation of people with and without disabilities in urban communities in cameroon and senegal vladimir y. pente, anita jeyam, stevens bechange, emma jolley, anne roca, sandra r. dossou, khady ba, joseph oye, salimata bocoum, laurene leclercq, elena schmidt received: 09 jan. 2024; accepted: 31 aug. 2024; published: 16 oct. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the right to participate in political processes is fundamental to democratic governance, economic development and human rights. objectives: we assessed participation in political processes and also explored factors associated with voting at the most recent election for people with and without disabilities. method: we conducted cross-sectional survey in four cities in senegal and three in cameroon in 2021. disability was assessed using the washington group short set of questions. univariate and multiple regression analyses were conducted to identify the factors associated with voting at the most recent elections. results: among 4180 participants in cameroon and 4171 in senegal, disability prevalence was 9.77% and 10.89%, respectively. more than half of the participants had voted at the most recent elections in both cameroon (52.31%) and senegal (58.27%). participants with an interest in politics, having all the key documents or registered with a political party were more likely to have voted in both countries. adjusting for socio-demographic characteristics, people with disabilities were less likely to have voted compared to those without disabilities in cameroon (odds ratio [or] = 0.58 [0.40, 0.84]) and in senegal (or = 0.36 [0.26, 0.44]). conclusion: there is an urgent need to address the socio-political and environmental factors that have been identified so as to close the disability gaps in voting and ensure equitable opportunities and levels of political participation between people with and without disabilities. contribution: this article contributes to the existing knowledge base on the political participation of people with and without disabilities in cameroon and senegal. keywords: people with disability; political participation; cameroon; senegal; africa. introduction background the right to participate in politics and public life is fundamental to achieving democratic governance, social inclusion and economic development and to realising human rights (pente et al. 2022a; 2022b; united nations 1967; united nation general assembly 1948). political participation refers to voluntary activities or actions undertaken by ordinary people (brady 1999:737–801; ekman & amna 2012:283–300) or the mass public (uhlaner 2015: 504–508) to influence public policy, either directly or by influencing the choice of selection of people making policies. political participation can take on many different forms: voting (in a presidential, municipal, referendum, party election); campaign activity (including membership in or work for political parties and organisations as well as donating money to such parties or groups); contacting public officials and cooperative or communal activities (basically as all forms of engagement that focus on issues in the local community) (ekman & amna 2012:283–300; verba & nie 1987). voting has long been perceived as the primary way for citizens to make their voice heard in the political system, and voter turnout has been described as the most commonly used measure of civic participation (ekman & amna 2012:283–300). we draw on the seminal work of van deth (2014:349–367) and concepts from the civic voluntarism model in our discussion of the factors that influence the participation of people with and without disabilities in political processes (van deth 2014:349–367; verba, schlozman & brady 1995). the civic voluntarism model is one of many frameworks within the vast landscape of civic participation theories that seeks to explain the determinants of political participation by focussing on resources, engagement and recruitment (verba et al. 1995). resources such as time, money, education are essential assets for engaging in political activities (barkan 2004:913–937). resources help you to have the money to pay the stamps for the birth certificate and identification (id) card and also have the knowledge about the importance of those document through education. engagement creates an essential connection to communities and their individual members through political interests, partisanship and political ideology. recruitment encourages people to engage in political activity, whether or not directly asked (verba et al. 1995). political participation in the general population in a democratic system, voting in national and local elections is a fundamental civic process through which the citizens of a country choose the people who represent them in policymaking and make decisions on their behalf. in order to vote in elections or referendums, eligible people need to be registered with the national electoral commission. the purpose of a registration process is to check eligibility, identify the appropriate location for the individual to vote and to reduce the potential of voting more than once (un women & undp 2015). systems and criteria for eligibility may vary, but typically as part of this process, an individual who wishes to register must prove their identity, that they are a citizen and that they are of age to vote (carter centre 2013). the way in which voters can prove their identity varies across countries. in many countries, proof of identity is assured through the possession of a birth certificate and/or a national identity card (carter centre 2013). in some countries, other documents are allowed to prove identity such as driving licence, army force id card, student card, employee id card (highton 2017:149–167). in cameroon and senegal, where this study was conducted, national identity cards are used for people to both register to vote and vote (carter centre 2013; direction générale des elections 2018; passanti 2021:515–525). previous studies of political participation show that the availability of documents required to prove one’s identity can have a significant impact on the ability of citizens to register to vote and thus influence who is able to cast their vote (okinda, ojwang & nyambuga 2020:63–87). documents that are expensive or time consuming to obtain may be held by fewer citizens, disproportionately favouring those with resources or living in more accessible locations. while robust registration processes are recognised as important (wolf et al. 2017), there are cases where the requirements may inadvertently disenfranchise certain groups of individuals who may find it harder to access the documents required for registration or to navigate the registration process. as an example, it has been reported that people with disabilities (european union agency for fundamental rights 2014; electoral institute for the sustainability of democracy in africa 2010; international foundation for electoral systems et al. 2018), women (afrobarometer 2021:236; electoral institute for the sustainability of democracy in africa 2010; un women & undp 2015) and the homeless (heringa & nguyen 2020; tucker, de león & mccool 2020) face difficulties in fulfilling the requirements to register to vote. studies from other settings have reported the influence of socio-demographic characteristics such as age (jeroense & spierings 2023:1–23; norris 2002:19–34), gender (fakih & sleiman 2024:154–177; goyal 2023:1–16), education, marital status, employment status, income (alelaimat 2023:54–67) and residential location (cho, gimpel & dyck 2006:156–167) on voters’ electoral participation. in studies conducted in sub-saharan africa, it has been shown that age is a significant positive predictor of voter turnout as older people are more likely to vote than the youth (afrobarometer 2011:37; jeroense & spierings 2023:1–23; norris 2002:19–34; tambe & kopacheva 2024:97–115). education equips people with knowledge needed to understand politics and internalise political messages and has also been positively associated with more active voting behaviour in other settings (ahearn, brand & zhou 2023:574–597; hansen & tyner 2021:711–735; quintelier 2010:137–154). general interest and motivation to participate in politics are also a predictor of voting and other types of political participation. in a meta-analysis by smets and van ham (2013), the association between political interest and electoral turnout was found to be significant in 85% of the reviewed studies (smets & van ham 2013:344–359). goldberg and sciarini, argued that in the causal chain, political interest determines the likelihood of voting, which then determines the voter turnout (goldberg & sciarini 2023:141–160). political participation and people with disabilities in cameroon and senegal like many other african countries, recent studies in cameroon and senegal highlight the challenges faced by people with disabilities, including exclusion from participation in political activities (breffka et al. 2023:1085; opoku, mprah & saka 2016:980–999; thiendella fall, deslandes & parent 2019:23–34). there is evidence to suggest that people with disabilities in both countries experience various types of barriers, including stigma and negative attitudes towards persons with disabilities (opoku et al. 2016:980–999), social isolation (opoku et al. 2017:67–75), lower levels of education (united nations education scientific cultural organisation & unesco institute for statistics 2018) and limited financial resources (virendrakumar et al. 2018:509–538). in addition to limited accessibility to voter registration centres and polling stations (virendrakumar et al. 2018:509–538), they may have difficulties accessing the required documents for voter registration (international foundation for electoral systems & national democratic institute 2014; international foundation for electoral systems et al. 2018). all these barriers can have a negative impact on the ability of people with disabilities to vote. however, empirical evidence on the determinants of political participation among people with disabilities and other disadvantaged groups in cameroon and senegal and sub-sahara africa more broadly continues to be limited. both cameroon and senegal are signatories to the united nations convention on the rights of persons with disabilities (uncrpd) and both have passed national legislation, which guarantee political rights and the opportunity for people with and without disabilities to enjoy them on an equal basis with others (republic of cameroon 2023; republic of senegal 2010, 2013). however, in cameroon, the electoral code does not make any clear provision to facilitate the participation of people with disabilities in the electoral process (republic of cameroon 2012), while in senegal the 2010 act on absolute parity between men and women encourages the participation of women, particularly women with disabilities, in public life (pente et al. 2022a; 2022b; republic of senegal 2010). in this study, we use data from two large cross-sectional surveys to explore the factors that influence the electoral participation of people with and without disabilities in urban areas of cameroon and senegal. this study has three specific objectives: firstly, we assess the participation of people with and without disabilities in specific political processes, including membership in political parties, debating politics and voting in the most recent elections. secondly, we examine the socio-demographic characteristics associated with the participation. thirdly, we assess how access to the key documentation, such as birth certificates, national identity card and voter registration influence participation in elections, for different population sub-groups. methods study design and setting this study, which was based on two cross-sectional surveys of randomly selected households, was conducted between may and october 2021. one survey was conducted in three cities of cameroon (maroua, mbalmayo and yaoundé) and the other in four cities of senegal (louga, kaolack, kaffrine and pikine). these locations were purposefully selected as they were areas where sightsavers had implemented activities related to enhancing the political participation of people with disabilities (pente et al. 2022a; 2022b). deploying a cross-sectional design allowed us to consider a number of characteristics or factors and determine which ones were associated with electoral participation at a specific point of time after the last election. at the time of the study, the most recent election had taken place in 2020 in cameroon and in 2019 in senegal. study population and sampling we included all adults of voting age (20 years and above in cameroon and 18 years old and above in senegal) at the most recent elections: the 2020 parliamentarian and municipal election in cameroon and the 2019 presidential election in senegal. in both countries, sample size was calculated based on the total population of voting age in the studied areas: 3 809 643 people in cameroon (national institut of statistics & ministry of public health 2016) and 4 007 16 people in senegal (national agency for statistics and demography 2014:36). the sample comprised 4627 individuals for cameroon and 4365 individuals for senegal. in both countries, the sample size was distributed according to the percentage of the population of each city in the total population of the country. in cameroon, the sample size was distributed as follows: mbalmayo 357, maroua 1332 and yaounde 2939. in senegal, the sample size was distributed as follows: pikine 747, kaolack 2244, kaffrine 395 and louga 978. in both countries, a two-stage sampling methodology was used. the first stage involved the random selection of residential neighbourhoods from the selected cities based on probability proportional to size. at this stage, 94 residential neighbourhoods were selected in cameroon and 85 in senegal. at the second stage, a random walk was used to select households within each neighbourhood (thompson 2006:11–24). in each cluster 50 individuals were randomly selected. all eligible adults present in the household at the time of the survey were invited to participate. survey measures and data collection tools our primary outcome of interest was having voted at the most recent elections, which was binary, coded as ‘yes’ or ‘no’. as covariates of interest, we considered resources and political engagement dimensions, as described in the civic voluntarism model (barkan 2004:913–937; verba et al. 1995). these included socio-demographic characteristics (age, sex, residency, education, wealth), disability status and possession of the civic and voter documents, discussing politics and membership in political parties, coded as ‘yes’ or ‘no’. education was based on the highest level of formal schooling completed by a respondent. household wealth status was assessed using the cameroon and senegal equity tools, which classified the population into one of five asset-based wealth quintiles of the urban population (the first quintile ‘q1’ being the poorest and the fifth quintile ‘q5’ the richest). the wealth quintiles were then dichotomised for the purposes of analyses: q1 and q2 as the relatively poor group and q3, q4 and q5 as the relatively wealthier group (chakraborty et al. 2016:141–154). disability status was assessed using the washington group short set of questions on disability (washington group on disability statistics 2022). disability was determined by participants’ responses to six questions relating to six functional domains: seeing, hearing, walking and/or climbing, communication, self-care and remembering and/or concentrating. the responses were given on a four-point scale: no difficulty, some difficulty, a lot of difficulty or cannot do at all (pente et al. 2022a; 2022b). following the washington group recommendations, participants who responded ‘a lot of difficulty’ or ‘cannot do at all’ to at least one of the six questions were categorised as having a disability. data were collected using an interviewer administered questionnaire (s1 annex 1: data collection tool), which took between 20–30 min to complete per participant. the questionnaire comprised 4 sections: (1) socio-demographic characteristics, (2) the cameroon and senegal equity tools to assess the household relative wealth (institut national de la statistique/ins & icf 2020), (3) the washington group short set of questions on disability adults (washington group on disability statistics 2022) and (4) the political participation questionnaire specific to the cameroon and senegal political participation context. all study questionnaires were translated into french and fulfulde for cameroon and french and wolof for senegal. the french, fulfulde and wolof versions were pilot tested prior to the survey in two residential areas of the city of yaoundé in cameroon and in another residential area in dakar. in selecting the areas for pilot testing, attention was paid to the tool specification, with the objective of identifying an area where it was possible to have people speaking fulfulde and wolof. the pilot testing was conducted with 50 participants. pilot testing assessed the feasibility of administering the proposed measures, the administration time and the psychometric properties of the measures. analysis of the pilot test data did not indicate the need for revisions and/or reductions of the instruments. statistical analysis data were managed using stata version 16 (statacorp 2019) and analysed using r version 4.1.2. (r core team 2021). respondents’ profile by socio-demographic characteristics and disability status was examined using descriptive statistics. to address the first objective, we started by looking at the distribution of participation among people with and without disability in specific political processes. because age is a known confounder of the relationship between disability and voting (afrobarometer 2011:37; jeroense & spierings 2023:1–23; norris 2002:19–34; tambe & kopacheva 2024:97–115; world health organization 2011, 2015), we used univariate logistic regression models adjusted for age to examine associations between having voted (outcome) and participants’ socio-demographic characteristics as well as their possession of the key documents (birth certificate, national id card, registration to vote and voters card) and their engagement in specific political processes (interest in discussing politics and membership in a political party). to address the second study objective, we focussed on examining the relationship between disability and having voted, proceeding in two stages. we used a hierarchical regression model-building approach. in the first stage, the relationship was examined, by including all other socio-demographic characteristics in the model (age, sex, education, location, relative wealth). at the second stage, to address the third study objective, we added the possession of key documents, discussing politics and membership of a political party variables. this enabled us to explore if and/or how the relationship between disability and having voted was mediated by types of political engagement. all analyses were conducted using a 5% significance level; no imputation of missing data was done. ethical considerations this article followed all ethical standards for research on human or animal subjects and have received the ethical approval for this study was obtained from the national ethics committees of both countries: cameroon (reference number: 2021/02/1338/ce/cnersh/sp) and senegal (reference number 00000085/msas/cners/sp of 08 june 2021). participation in the study was voluntary, and no data were collected before consent was obtained. confidentiality was maintained at all times. informed consent from all participants was obtained and documented. all participants were informed in their preferred language (french, english, fulfulde in cameroon and french and wolof in senegal) about the objectives of the study, the voluntary and confidential nature of the participation, the types of questions asked and the risks and benefits of participating in the study. specific adaptations and supports were provided to enable people with disabilities to participate fully and safely in this research. for example, a sign language translator was recruited to assist data collectors where participants were deaf. for participants with intellectual difficulties or communication difficulties, a member of the household who understood the participant was invited to assist the data collector during the interview with the participant’s consent (pente et al. 2022a; 2022b). results participant characteristics a total of 4180 individuals were included in the analysis in cameroon. the majority of the participants were from yaoundé (56.76%), followed by maroua (34.68%) and mbalmayo (8.56%). most participants were aged between 21–39 years (66.21%), age ranged from 21 to 99 years. most were female (57.58%) and those who completed secondary education were the largest group (43.80%) (table 1). table 1: participants characteristics. in senegal, the analyses were conducted on 4171 individuals. the majority of the participants were from kaolack (50.90%) followed by louga (21.79%), pikine (15.29%) and finally kaffrine (12.03%). most participants were aged between 20 and 39 years (60.9%), age ranged from 20 to 98 years. the majority were female (63.86%) and those with no formal education constituted the largest group (37.14%) (table 1). in cameroon, study participants were slightly wealthier than the average urban population in cameroon (31.7% in the two poorest quintiles against the expected 40%, if they were similar to the average urban population of the country). in senegal, study participants were substantially wealthier than the average urban population (17.2% in the two poorest quintiles against the expected 40%). prevalence of disability overall, the sample prevalence of disability was 9.77% in cameroon and 10.89% in senegal. the prevalence of disability starkly increased with age in both countries. it was higher among women than men in both the countries: 11.48% versus 7.46% in cameroon, respectively; and 12.24% versus 8.49% in senegal, respectively. there were also regional variations in both the countries (table 2). table 2: sample prevalence of disability. overall political participation overall, more than half of the participants had voted in the most recent elections in both cameroon (52.31%) and senegal (58.27%). the vast majority of participants had a birth certificate or id in both countries: 84.98% and 85.45% in cameroon; 95.93% and 82.77% in senegal, respectively. in cameroon, only around half of the participants were currently registered to vote (55.81%) or had a valid voter card (51.41%), while in senegal, around two-thirds were registered to vote (66.3%) or had a valid voting card (69.37%). in cameroon, less than half of the participants (40.62%) owned four key documents (birth certificate, a national id card, registration to vote and a valid voter card), while in senegal, 68.19% of participants had all four documents (table 3). table 3: overall political participation. in senegal, less than half of the participants reported an interest in discussing politics (41.39%), while this was close to two-thirds in cameroon (63.14%). among those interested in politics, television (tv) was most commonly cited source of information in both countries: cameroon (48.57%) and senegal (33.73%) (table 3). the proportion of participants, who are members of a political party was 20.25% in cameroon and 11.16% in senegal (table 3). political participation by disability status in cameroon, the proportion of people who recently voted was slightly higher among those with disabilities (57.61%), compared to those without disabilities (51.75%). a significantly lower proportion of people with disabilities (75.24%) had a birth certificate (versus 86.04% in those without disabilities), but the proportion of those having all four documents was similar among people with and without disabilities. there was a significant difference in terms of registration to a political party: respectively, 27.88% and 19.43% of people with and without disability were members of a political party (table 4). table 4: political participation by disability status. in senegal, there was no significant difference between those with and without disabilities in terms of recent voting (60.89% and 57.96%). no other significant difference was observed (table 4). disability status and voting in recent elections in both countries, univariate regression models adjusting for age showed that there were significant associations between recent voting and disability status, education, location, interest in politics, possession of all key documents and membership of a political party (p < 0.01 for all) (table 5). indeed, people with disabilities were less likely to have recently voted than those without disabilities (in cameroon, or = 0.52 95% confidence interval [ci] = [0.37, 0.73], p < 0.01), in senegal, or = 0.36, 95% ci = [0.27, 0.48], p < 0.01). in cameroon, despite the significant association between recent voting and highest level of education, no meaningful pattern was observed. however, in senegal, people with formal education were more likely to have recently voted than those without formal education, with ors ranging from 1.66 for those who completed primary to 2.35 for those who completed university, p < 0.01) (table 5). people living in yaoundé or mbalmayo were less likely to have recently voted than those living in maroua (or = 0.53 [0.41, 0.69] and or = 0.65 [0.44, 0.96], respectively). while in senegal, people who lived in kaolack were significantly less likely to have recently voted than those living in kaffrine (or = 0.64 [0.48, 0.84]). table 5: univariate associations with recent voting, results of models adjusted for age. finally, as shown in table 5, in cameroon, results show that participants interested in politics, having all the key documents or registered with a political party were more likely to have recently voted (respectively, or = 3.67 [3.00, 4.49]), or = 34.41 [26.84, 44.13]) and or = 10.81 [7.88, 14.85]). results showed similar associations, although with slightly different order of magnitudes, in senegal (respectively, or = 1.99 [1.75, 2.26], or = 45.83 [36.73, 57.19] and or = 2.60 [2.13, 3.18]). after adjusting for socio-demographic characteristics in a multivariable model, the association between disability and having recently voted remained significant and of a similar magnitude as in the univariate analysis for both cameroon (or = 0.58 [0.40, 0.84], < 0.01) and senegal (or = 0.36 [0.26, 0.44], p < 0.01) (table 6). this suggest that disability status is an important factor associated with participation in elections. in both countries, people with disabilities were less likely to participate in the most recent elections independently of their age, sex, education, location or relative wealth. table 6: association between disability and recent votingresults of multivariable logistic model including socio-demographic variables. when additionally including other political participation variables (interest in politics and membership of a political party), in the multivariable model, the magnitude of association between disability and voting decreased and reached the threshold of statistical significance in cameroon (or = 0.64 [0.41, 1.01], p = 0.05). in senegal, the association remained highly significant (or = 0.38 [0.27, 0.53], p < 0.01) (table 7). results from this second stage of multivariate analysis indicate that, in both countries, the presence of a severe functional difficulty impacts negatively on one’s ability to participate in elections, independently of their individual characteristics or of their engagement in politics. table 7: association between disability and recent voting – results of multivariable logistic model including socio-demographic and political engagement variables. discussion the aim of this study was to assess levels of political participation among people with and without disabilities and explore factors associated with voting in urban populations in cameroon and senegal. guided by van deth’s conceptual map of political participation (van deth 2014:349–367) and the civic voluntarism model’s determinants of voting behaviour (barkan 2004:913–937; verba et al. 1995), we focussed on socio-demographic characteristics and other types of political engagement, such as voter registration, involvement in political discussions and political party membership. overall, in both countries, slightly more than half of the participants of eligible age had voted in the most recent elections. in both countries, voting behaviour was strongly associated with older age. the finding is consistent with many other studies. norris (2002) identified age as one of the most important demographic factors influencing voter turnout and reported that young people generally showed lower interest in voting (norris 2002:19–34). in africa, data from the afrobarometer also showed that youth tend to vote less and express a lower level of partisanship (afrobarometer 2011:37) for other individual characteristics, women were less likely to vote only in cameroon. one possible explanation for this finding could be the patriarchal nature of the cameroonian society (nguindip 2023:37–50), which may be related to cultural or religious beliefs that have been shown to hamper efforts aimed at gender equality (tambe & jormfeldt 2024: 1–27). other studies in the region have also shown differences between women and men in the way they vote (afrobarometer 2021:236). education was associated with voting in both senegal and cameroon when other socio-demographic factors were accounted for, with people, who never went to school being less likely to report voting than people with education. we did not find any association between voting and relative wealth. availability of the key documents, such as birth certificates and national id cards, is often reported as vital for electoral registration and voting (electoral institute for the sustainability of democracy in africa 2010) (ayang macdonald 2022; government accountability office 2014). for example, in cameroon, to register on electoral list one has to present their id card and a voter card will be issued. the carter centre study on voter id published in 2013 highlighted that the main barrier to obtaining a voter card was the difficulties in obtaining the national id card for those, who did not have birth certificates, as they had to apply to court to obtain a nationality certificate, while a birth certificate was costly to obtain for those, who missed the initial birth registration process of 3 months (carter centre 2013). the situation appears to be less challenging in senegal, where a national biometric identity card with a chip was adopted in 2005 (passanti 2021:515–525) to act as id card and voter card. it is the only document accepted to identify the elector (direction générale des elections 2018). our results show that in both countries, most participants had the civic documents required (birth certificate, id card). however, not all those holding the required documents had registered to vote or had a voter’s card. in senegal, a higher proportion of participants was registered to vote and had a voter card than in cameroon, most likely because of a better chip-based registration system described earlier (passanti 2021:515–525). in this setting, there was about 8% gap between those registered to vote and voting in the past election. in the multivariate analysis, the possession of all four documents was associated with higher likelihood of voting in the past election. we also found a significant association between expressed interest in politics and voting at the last election in both countries. similar results were reported in other studies, which showed that political interest is one of the main predictors of electoral participation (goldberg & sciarini 2023:141–160; smets & van ham 2013:344–359). we also found that one in ten participants in senegal and one in five in cameroon were registered as members of a political party and similarly to other settings (dallaire 2016), these participants were more likely to vote in the election. one of our primary interests in this study was to examine associations between voting in the most recent elections and disability. data on political participation of people with disabilities can be difficult to interpret and compare across settings. firstly, disability is a complex concept, which is defined and measured differently. secondly, and more importantly, as shown earlier, there are a number of factors associated with political participation and many of them are associated with disability. these include age (disability increases sharply with age and older people tend to be more politically active; afrobarometer 2011:37; norris 2002:19–34); sex (disability prevalence is higher among women, and women tend to be less interested in politics than men); education (people with disabilities have lower levels of education and people with lower levels of education are less politically active) and wealth (people with disabilities have lower socio-economic status and people with lower socio-economic status show lower levels of political engagement). it is therefore critical to always specify how disability status was established in a study and to adjust study results for age and other relevant confounders. in this study, we used the washington group questions on disability, a validated international tool developed to provide comparable disability data. the estimated prevalence of disability in the studied age group was around 10% in both countries, which is consistent with results of other studies using the washington group questions in these settings (mactaggart et al. 2016:e0164470, 2021:9213). in both countries, as expected, the prevalence of disability was slightly higher among women and increased considerably with age. other studies showed similar trends (hughes 2018:644–645; pili et al. 2018:7; ritz & asamoah 2021). after adjustment for confounding factors, our findings show that people with disabilities were significantly less likely to vote in the most recent elections than people without disabilities in both countries. this suggests that in these settings, the presence of a severe functional difficulty creates a barrier to political inclusion irrespective of other individual characteristics, location, wealth or interest in politics. lower levels of participation of people with disabilities in elections has been documented previously but largely in high income settings. for example, a review of election data from several states in the united states published in 2021 reported that having a disability decreased voter turnout by 6.4% to 8.9% (stum 2021:19). in europe, the analysis of the european social survey and the european union fundamental rights agency data reported the average voting gap of 8.38% in 2016 (teglbjærg et al. 2022:1342–1361). lower levels of political participation of people with disabilities are often attributed to environmental factors, such as lack of accessible communication, unadjusted polling stations and negative social attitudes. the impact of such factors in resource constrained settings of lowand middle-income countries (lmics) is likely to be more severe than in high-income countries. overall, the results of our study support the utility of the civic voluntarism model (barkan 2004:913–937; verba et al. 1995) and highlight specific variables and components that help explain voting participation of the studied populations. we show that age, possession of key documents and interest in politics impact voting behaviour, and disability status has a significand effect independent of other factors. equal participation in decision-making is the cornerstone of any democratic society, as the collective and active commitment of each citizen fosters collective accountability and social transformation (krishna 2002:437–460). therefore, addressing the factors that have been highlighted here as associated with voting (possession of key documents, interest in politics, etc.) is likely to enhance the overall levels of voting. however, addressing environmental factor such as registration and polling station accessibility, social attitudes and access to political information is critical to close disability gaps in voting and ensure equitable opportunities and levels of political participation between people with and without disabilities. further research on the pathways for disability exclusion and how they affect people with different types of functional difficulties is also needed. our study has some limitations. firstly, this was a cross-sectional study that is limited in establishing temporal relationship between the covariates and the primary outcome. secondly, the study was conducted in specific urban areas that were also the implementation sites for political participation programmatic activities led by sightsavers, therefore the findings cannot be generalised. thirdly, the study was conducted during coronavirus disease 2019 (covid-19) and as a result of the preventive measures in place at the time, we faced several hurdles in data collection and some participants were not able to participate. this might have affected the quality of the data collected and the generalisation of the results. acknowledgements the authors thank the study participants and all members of the fieldwork teams for their vital contributions to the study, in particular the study supervisor’s, cameroon: tchoumkuu pendeme alice noël, ouabo emmanuel romaric and mamadou ibrahim; senegal: the study coordinator dr jean tine and the team supervisors, abdoulaye diome, secou coly, moussa gning and djibril toure. we are also grateful to dr ben gascoyne for his support at the beginning of the implementation phase of the study. competing interests this study was funded by irish aid. the funder had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript. authors’ contributions v.y.p., s.b., e.j., a.r., s.r.d., k.b., l.l., j.o., s.b. and e.s. designed the study. v.y.p., a.j., s.b., e.j. and e.s. conducted the analysis. v.y.p. and a.j. prepared the first version of the manuscript. a.r. and e.s. undertook a critical review of the manuscript. v.y.p., a.j., s.b., e.j., a.r., s.r.d., k.b., l.l., j.o., s.b. and e.s provided comments on subsequent drafts and approved the final version of the manuscript. funding information this research study was funded by irish aid. data availability the authors confirm that the data supporting the findings of this study are available within the article. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references afrobarometer, 2011, the political participation of africa’s youth: turnout, partisanship, and protest, afrobarometer and 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institute for democracy and electoral assistance, stockholm. world health organization, 2011, world report on disability 2011, world health organization, geneva. world health organization, 2015, world report on ageing and health, world health organization, geneva. article information authors: kovin s. naidoo1,2 jyoti jaggernath2,3 prasidh ramson4 farai chinanayi1, 2 tom zhuwau5 lene øverland4 affiliations: 1brien holden vision institute, durban, south africa 2african vision research institute, university of kwazulu-natal, south africa 3vision cooperative research centre, sydney, australia 4orbis, cape town, south africa 5department of rural development and land reform, south africa correspondence to: jyoti jaggernath email: j.jaggernath@brienholdenvision.org.za postal address: 172 umbilo road, durban 4000, south africa dates: received: 20 may 2014 accepted: 21 jan. 2015 published: 25 june 2015 how to cite this article: naidoo, k.s., jaggernath, j., ramson, p., chinanayi, f., zhuwau, t., øverland, l., 2015, ‘the prevalence of self-reported vision difficulty in economically disadvantaged regions of south africa’, african journal of disability 4(1), art. #136, 11 pages. http://dx.doi.org/10.4102/ajod.v4i1.136 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. the prevalence of self-reported vision difficulty in economically disadvantaged regions of south africa in this original research... open access • abstract • introduction    • literature review       • poverty in south africa • vision impairment and blindness in south africa    •       • eye care services in south africa       • aim and objectives of the study • research method and design    • research setting and design    • procedure    • data analysis • results       • ethical considerations       • data protection       • trustworthiness       • reliability       • validity • discussion    • limitations of the study • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: vision impairment, resulting in vision difficulties, is a leading cause of disability, and hence one of the key barriers for people to access education and employment, which may force them into poverty. objectives: the objective of this study was to determine the prevalence of self-reported vision difficulties as an indicator of vision impairment in economically disadvantaged regions in south africa, and to examine the relationship between self-reported vision difficulties and socio-economic markers of poverty, namely, income, education and health service needs. methods: a cross-sectional study was conducted in economically disadvantaged districts to collect data from households on poverty and health, including vision difficulty. as visual acuity measurements were not conducted, the researchers used the term vision difficulty as an indicator of vision impairment. data were collected from 27 districts (74 901 respondents). logistic regression analysis and chi-square tests were used to determine bivariate relationships between variables and self-reported vision difficulty. kernel density estimators were used for age, categorised by self-reported and not reported vision difficulty. results: prevalence of self-reported vision difficulty was 11.2% (95% ci, 8.7% – 13.7%). more women (12.7%) compared to men (9.5%) self-reported vision difficulty (p < 0.01). self-reported vision difficulty was higher (14.2%) for respondents that do not spend any money. a statistically significant relationship was found between the highest level of education and self-reporting of vision difficulty; as completed highest level of education increased, self-reporting of vision difficulty became lower (p < 0.01). a significantly higher prevalence of self-reported vision difficulty was found in respondents who are employed (p < 0.01), 17% (95% ci: 12.8% – 21.1%). conclusion: the evidence from this study suggests associations between socio-economic factors and vision difficulties that have a two-fold relationship (some factors such as education, and access to eye health services are associated with vision difficulty whilst vision difficulty may trap people in their current poverty or deepen their poverty status). the results are thus indicative of the need for further research in south africa. introduction top ↑ vision impairment, causing vision difficulties, is the leading cause of disability, and hence one of the key barriers for people in south africa to access education and the labour market, which may force them into poverty. the war on poverty campaign (wopc), an initiative of the south african government to provide services and support for the ‘poorest of the poor’ families in the country, has developed a large database of households that were identified as being economically disadvantaged. the wopc was commissioned by the presidency as part of the government's apex priorities, with the deputy president as the lead person. the campaign seeks to raise the profile of current poverty eradication strategies and reach out to more people in south africa. in addition, the campaign attempts to ensure that civil society, business, non-government organisations, and community-based organisations join in the anti-poverty effort (santiaguel n.d.). the wopc resolved to define the poverty matrix in the country; develop a database of households living in poverty; identify and implement specific interventions related to these households; monitor progress in moving households out of poverty, and coordinate and align poverty eradication programmes to maximise impact and avoid wastage and duplication. in line with the objectives of the wopc, a strategic partnership was formed between three eye health institutions namely, orbis, the brien holden vision institute, and the african vision research institute (avri) and the department of social development to investigate poverty and eye health in south africa. as part of the wopc, this research collaboration brought together specialists – the researchers and authors – in the field of eye health to investigate the prevalence of eye diseases in south africa. this three-pronged collaboration also aims to identify, implement, and monitor eye health services that are desperately needed to improve sight. this article, however, only presents data that were collected from the wopc initiative, which provided the researchers with a select sample of poor households that had been identified with self-reported vision difficulties. other studies, as part of this collaboration, are currently being conducted. in previous studies a general population would have been sampled, prevalence of blindness and vision impairment determined by means of visual acuity measurements, and then correlated with employment, education, quality of life and other socio-economic indicators. in this study the researchers have, however, direct access to households that the wopc identified as being in poverty. data collected from the wopc include information on health and vision difficulties. thus, access to the wopc database provided the researchers with an opportunity to determine the prevalence of self-reported vision difficulties in economically disadvantaged regions of south africa. the purpose of this article was, therefore, to explore and analyse demographic (age, gender, education), socio-economic (housing, employment, social and documentation) needs, self-reported vision difficulty data as an indicator of vision impairment, and eye health service needs that were extracted from the wopc database. the article examines the relationship between self-reported vision difficulty and indicators such as income, education and eye health service needs which are often used as markers for poverty in resource limited communities. in this study we sought subjective (self-reported) responses. as visual acuity measurements were not conducted, the researchers used the term vision difficulty as an indicator of vision impairment which is usually classified by the world health organisation (who n.d.) according to a measured visual acuity. literature review poverty in south africa south africa has a population of 51.8 million people (statistics south africa [statssa] 2011a) and a gross domestic product (gdp) per capita per annum of r80 780.10 ($6617.90) (world bank 2015a). approximately 22% of the population in south africa is living on less than purchasing power parity (ppp) of $2.00 a day (world bank 2015b), most of whom are black south africans. in 1995, an estimated 58% of south africa's population was categorised as being poor, calculated by using a national lower-bound poverty line of r2000.00 (r322.00 per person) per month (özler 2007:499). the poverty head count in 2011 was 56.8% (statssa 2011b). the income gini coefficient in south africa stands at an alarming high 0.7 (organisation for economic co-operation and development [oecd] 2013), whilst norway has the lowest gini index of 25.6% as reported in 2012 (euromonitor international 2012). this suggests that probably nowhere else in the world are so many people more privileged in one country whilst others in the same country live close to or below the poverty line. high rates of unemployment, poverty and inequality in south africa can be traced to colonial exploitation and the apartheid system as well as policies that denied african people access to opportunities, including access to land, to run businesses, to own certain assets, to quality education and to live in areas that were well established and located (office of the presidency 2011). whilst advances in areas such as electrification and access to education have increased equality of opportunities (world bank 2012), the gini coefficient for south africa (0.66 in 2003 to 0.7 in 2008) (leibbrandt et al. 2010:10) suggests that there has been no progress towards income equality, almost 20 years after the end of apartheid. ethnicity accounts for a large part of income inequality (oecd 2013). however, data collected via the wopc do not provide an analysis on income inequality in south africa. the district health barometer (2008/2009) indicated that 10 of the most deprived districts in south africa in 2006 fell within three provinces, namely, kwazulu-natal, eastern cape and limpopo which are predominantly rural with a large population size compared to other provinces in the country (day et al. 2009). households living on less than r800.00 ($106.00) per month ranged between 63% and 82% in the 10 districts. the afrobarometer poverty survey's lived poverty index (lpi) for 2012 indicates that poverty in south africa has increased despite reported average economic growth of 3.6% between 2002 and 2012 (dulani, mattes & logan 2013:12). poverty is much higher in rural areas, particularly in the former bantustans; however with the inward migration of people in search of work, deep poverty is also found in cities (office of the president 2011:09). more than two-thirds (68.8%) of rural dwellers were estimated to be living in poverty in 2011, as compared with less than a third (30.9%) of residents in urban areas (statssa 2014:33). furthermore, poverty amongst female-headed households and amongst children is also higher than average. women are more impoverished than men in south africa, with a headcount of 58.6% in 2011 as compared with 54.9% for men (statssa 2011b). women and children experience higher vulnerability to poverty, with an increasing number of them finding themselves as heads of households, especially in rural areas (lewis 2001). according to lewis (2001:73) women's economic and social status in south africa has been largely determined in relation to men. overall, women tend to have less access to resources than men. in 2011, estimates showed that children constituted 37.6% of the total south african population and, alarmingly, almost half (46.6%) of all poor people in south africa were children (statssa 2014:28). poverty is closely related to poor education and lack of employment. almost 25% of the population is unemployed (statssa 2011b). klasen (1997:51) suggests that the poor experience a lack of access to education, quality health care, basic infrastructure, transport, and productive resources. they are heavily indebted and depend largely on social grants, particularly social pensions and disability grants. in addition, those who are poor also have limited access to health services because of factors such as prohibitive transportation costs (klasen 1997:51). according to may, the nature of poverty in south africa is changing as is evident in the rural-urban migration trend, whereby the urban population increased by 9.5 million, thereby increasing the number of urban poor by 4.7 million, whilst the number of rural poor declined by 770 000 (may 2010:02). despite this, livelihoods in poor rural communities are characterised by asset poverty, lack of access to the resources for food production and high levels of monetisation and integration into the broader economy (du toit 2005:09–10). this leads to a high degree of cash-dependency, low levels of education and subsequent low employment levels and insecure unskilled jobs (du toit 2005:10). vision impairment and blindness in south africa top ↑ according to the south african national council for the blind (sancb 2011) there are over 724 000 people in south africa who may be experiencing vision impairment and thus vision difficulties. vision impairment is defined as unable to see at 6 metres what a normal sighted person will see at 12 metres or vision worse than this (dandona and dandona 2006:04). the south african census 2001 (statssa 2001) data indicate that 2 255 982 south african individuals (5% of the total population) self-reported that they had some form of disability. the largest proportion of individuals (32%) indicated that they had vision disability, 30% a physically disability, 20% a hearing impairment, 16% were emotionally disabled, 12% an intellectual disability and 7% indicated that they had a communication disability. in the south african census 2011, disability was defined as difficulties encountered in functioning as a result of body impairments or activity limitation, with or without the use of assistive devices (statssa 2011c). less than 11% of the population reported having difficulties, with the largest proportion indicating that they had vision difficulties (11.1%). other difficulties were reported as hearing (3.5%), communicating (1.6%), walking or climbing stairs (3.5%), remembering or concentrating (4.4%), self-care (3.4%). spectacles and chronic medication (14% and 12% respectively) were reported (the total population surveyed) as more used compared to other assistive devices (statssa 2011a). there are 400 000 people in south africa who are blind, that is, unable to see at three metres what a normal sighted person sees at 60 metres or vision worse than this (mercy vision 2013:01). the leading causes of blindness are cataracts (66%) and glaucoma (14%), and the majority of people affected (80%) live in the rural areas (south african national department of health 2002). cataracts account for 190 000 blind people in south africa. it is further estimated that around 9000 children are blind and would benefit from eye care (international finance cooperation [ifc] 2007). moreover, the south african disability alliance (sada) report indicates that women make up 57% of the total number of blind and vision impaired people in south africa (sada report n.d.:31). the sada report further indicates that 97% of vision impaired south africans are unemployed. the high percentage of unemployed people with vision impairment could be because of vision difficulties in carrying out work tasks that is dependent on good vision. about 23% are between the ages of 15 and 36 years, and only about 5% to 10% of the total blind population is braille literate (sada n.d.31). eye care services in south africa the south african government has restructured the health system to improve equity and access to primary health care after the first democratic elections in 1994. however, major inequities remain despite achieving democracy and new leadership. across south africa's nine provinces, there are significant variations in health status and access to health services (lawn & kinney 2009:02), including eye care services. the overwhelming majority of south africa's poor live in rural areas without access to quality eye care services. current estimates indicate that there are 3408 optometrists registered with the health professions council of south africa (health professionals council of south africa [hpcsa] 2013). a study conducted by the brien holden vision institute showed that about 97% of optometrists are practising in the private sector in the various provinces of south africa (brien holden vision institute 2006). there are approximately 325 ophthalmologists in south africa, of whom about 70 work in the public sector serving 80% of the population (lecuona & cook 2011). additional barriers to eye care services for poor people include the cost of travel to and from hospital as well as the exorbitant cost of accessing eye care from the private sector. this has serious implication for the ability of the majority of the population to access eye care. there are limited services available to the general majority, such as screening and basic treatment at a primary health care clinic, despite south africa being one of the most stable countries in the region. furthermore, ophthalmology and optometry services are expensive and, until just a few years ago, were almost exclusively accessible only to those living in urban areas through the private sector (rawlings 2011:03). in addition to the lack of adequate and accessible services, the expensive nature of spectacles makes them cost prohibitive to the poor. the inaccessibility of spectacles is an equally large problem because of the unavailability of spectacle technicians, manufacturers, and vendors in the rural areas (rawlings 2011:03). theoretical evidence that poverty and poor eye health in developing countries is closely related has been succinctly captured in a literature review documented by jaggernath et al. (2014). the evidence documented indicates that poor people have limited access to employment opportunities, basic services and health care and treatment that affect eye health and vision restoration (gooding 2006:02; naidoo 2007:417; mitra, posarac & vick 2011:05–06). in developing countries such as south africa, the state of eye health is disconcerting, despite the various interventions that have been subsidised to address the problem (jaggernath et al. 2014:1856). access to eye health services are difficult for people who are poor, and poor communities are challenged with barriers such as inadequate clinical services and finances, limited eye health knowledge and geographical barriers (jaggernath et al. 2014:1853). vision impairment and blindness is likely to impact on social and economic opportunities for affected individuals (dandona & dandona 2001:222; ho & schwab 2001:653) and can contribute to plunging individuals further into poverty. according to jaggernath et al., people experiencing at least one marker of poverty, such as employment or income, are more likely to be prone to certain eye diseases, less likely to seek treatment, or timely treatment, for their eye condition or disease and are more likely to have poor outcomes, as a result of barriers they face following treatment (jaggernath et al. 2014:1857). however, there has been little research conducted on the prevalence of vision difficulties related to vision impairment or blindness in south africa and the associations between poverty and vision impairment indicators, such as vision difficulties experienced by individuals who are economically disadvantaged. aim and objectives of the study in considering the literature consulted on poverty, vision impairment, blindness and eye health services in south africa, the aim of this study was to determine the association between self-reported vision difficulty, a proxy indicator of vision impairment, and socio-economic status in economically disadvantaged districts in south africa. specific objectives include determining the prevalence of self-reported vision difficulty in the economically disadvantaged regions of south africa and examining the relationship between self-reported vision difficulty and indicators such as income, education and health service needs which are often used as markers for poverty in resource limited communities. research method and design top ↑ research setting and design a cross-sectional study was conducted by the department of social development in south african. the study was conducted in way of a census by eliciting data on poverty and health, including vision difficulties from all respondents within selected economically disadvantaged and not economically challenged wards. wards were allocated a poverty index and wards that were most economically challenged were identified through a prioritisation process using key indicators such as income, education level, and employment and mapping households in those wards to confirm their status as households in poverty. twenty seven districts from all nine provinces in south africa were found to be most economically challenged and 18 016 poverty-struck households that were randomly selected from these districts were profiled by the wopc. data were obtained from 74 901 respondents. procedure the wopc collected household data by way of a census, using survey questionnaires. the preferred method of data collection was mobile phone questionnaires, because they were directly linked to the government's database and responses from participants are automatically stored on the database. face-to-face interviews need to be manually entered into the government database, thus, when respondents had no access to mobile phones, face-to-face interviews were conducted. data were obtained from 51.8% of households through mobile phone questionnaires and 48.2% of households by conducting face-to-face interviews. questionnaires included sections for demographic data, socio-economic conditions and health and disability. questions on health and disability included vision difficulty. the data were collected at the household level by trained enumerators. information was provided by a household representative, either by the household head or any other member of the household who was over the age of 18 years. following data collection, the questionnaire responses were captured by trained data entry technicians into an excel database. this database provided an opportunity to extract, analyse and disseminate information on poverty and self-reported vision difficulty in the economically disadvantaged districts in south africa and investigate the prevalence of self-reported vision difficulty as well the relationship between vision difficulty and poverty, using indicators for poverty, such as income, education, and health service needs in resource limited communities. these indicators were selected as they formed questions in the wopc questionnaire that related to the researchers’ objectives of correlating poverty markers with self-reported vision difficulties. data analysis logistic regression analysis was conducted to determine the association between poverty indicators and vision difficulty. chi-square tests were employed to determine bivariate relationships between each variable and the reported vision difficulty. table 1 shows the operational definition of each variable. the results generated are subjective, that is, dependent on how the respondent rated himself or herself, or how the proxy rated another household member. table 1: operational definitions of variables. the question on income in the wopc questionnaire was scarcely reported; therefore, a limitation to the analysis was that respondents’ expenditure was utilised as a proxy to income. importantly, there are three categories that do not state the exact expenditure: do not know, refused, and not stated. non-responses were removed from the analysis. age distributions were compared between respondents who self-reported having vision difficulty even when wearing spectacles and those who did not have any vision difficulty. this was conducted by plotting kernel density estimators for age, categorised by self-reported and not reported vision difficulty. vision difficulty was examined in relation to the education and health care needs. education needs include school feeding, fees and uniform, scholar transport, career guidance, access to bursaries, special educational needs, vocational skills development, further education and training (fet) and textbooks. health service needs included the need for a road to health card (rtc), treatment or medication requirement, medical check-up, rehabilitation services, assistive devices, nutrition programmes, voluntary counselling and testing (vct), immunisation and anthropometric measurements. in addition, documentation needs were combined to include identity document (id), birth, marriage and death certificate, passport and residence permit. working was defined in the study as being formally employed and earning a salary. this question was administered to respondents who are above the age of 15 years and respondents who are not currently attending schools. in consideration to the possibility that some respondents may have multiple skills, respondents were given a multiple responses option for confirming their different skills. all tests were conducted at the 5% level of significance, taking into consideration the sample design. results top ↑ the sample comprised of 55% women and 45% men. respondents less than 15 years old comprised 32% of the sample, 32% were between the ages 15 and 34 years and 30% were aged 35 years and older. the ages were not stated by 6% of the respondents. the prevalence of self-reported vision difficulty was 11.2% (95% ci: 8.7% – 13.7%) with 32.7% of these respondents wearing spectacles. of the total sample 5.1% (95% ci: 3.78% – 6.36%) wore spectacles. in addition, 9.8% (95% ci: 7.29% – 12.30%) self-reported that their eye condition was permanent. a significant percentage of women (12.7%) compared to men 9.5% self-reported vision difficulty (p < 0.01). the highest level of education was not reported by 3% of the respondents. educational level categories included no formal schooling, primary schooling, secondary school and tertiary education. there were 14.7% of respondents who did not state an education category; they, however, self-reported vision difficulty and were removed from this particular analysis. there is a statistically significant relationship between highest level of education and self-reporting of vision difficulty (p < 0.01); as completed highest level of education increased, self-reporting of vision difficulty became lower. respondents with at most primary schooling self-reported more vision difficulty compared to respondents with at least secondary schooling. self-reported vision difficulty was higher for respondents who are dependent on others (14.2%) and respondents who spend r10 000 or more per month (15.9%). respondents who were employed have a significantly higher prevalence of self-reported vision impairment than those who are not employed (p < 0.01), 17% (95% ci: 12.8% –21.1%), compared to 15.2% (95% ci: 11.3% – 19.0%) as depicted in figure 1. employed respondents were 1.15 (1.08 – 1.23) times more likely to self-report vision impairment compared to the unemployed respondents. figure 1: employment and vision status. expenditure was reported at household level and vision difficulty was self-reported at an individual level. however, it can be observed that self-reporting of vision difficulty for both the unemployed and the employed decreases as the household expenditure increases, save for household expenditure greater than r10 000 (figure 2). figure 2: self-reporting of vision difficulty by expenditure and employment status. self-reported vision difficulty was significantly higher for the free state, north west, western cape and gauteng provinces with 17.8%, 14.2%, 13.3% and 10.8% respectively (figure 3). figure 3: self-reported vision difficulty in the nine provinces of south africa. the highest number of occupants in a single household was 23 (figure 4). self-reporting of vision difficulty is erratic for households with more than 12 occupants as a result of the small frequencies observed for these households. respondents are 0.95 (95% ci: 0.94% – 0.97%) times less likely to self-report vision difficulty for each unit increase in household size (p < 0.01). importantly, it was observed that one household representative reported on behalf of each household member; therefore, vision difficulty may not have been reported in bigger households. figure 4: self-reported vision difficulty by household size. the following occupations were significantly related to self-reported vision difficulty: painting (p = 0.01), bricklaying (p < 0.01), waiter or waitress (p = 0.04), home and community-based care giving (p < 0.01), welding (p < 0.01), carpentry (p = 0.03), electrical (p < 0.01), child care (p < 0.01) farming (p < 0.01) and sewing (p < 0.01). table 2 shows that respondents involved in sewing are 2.1 times more likely to have vision difficulty than those without the skill. on the other hand respondents with electrical skills are 0.7 times less likely to self-report vision difficulty than those without the skill. however, there was no significant relationship between vision difficulty and security, plumbing, plastering or book keeping skills. table 2: odds ratios for skills. more respondents aged below 40 years reported that they have no vision difficulty in comparison to those who are above 40 (figure 5). the density plot for individuals with self-reported vision difficulty showed a bimodal distribution with peaks at about 18 and 58 years. therefore, relatively more people in these age groups self-reported vision difficulty even when wearing spectacles. when comparing the two age plots for those below 40 years, more individuals did not report vision difficulty whilst the converse is correct for individuals aged above 40 years. at the age of 40 years, the number is the same for people that self-reported vision difficulty and those who reported that they had no vision difficulty. figure 5: comparisons between ages for those with self-reported vision difficulties and those without vision difficulties. the distributions of the two functions using the kolmogorov-smirnov test for equality between distribution functions (figure 5) conclude that the two groups have different distribution functions (p < 0.01). in addition the mean ages for those self-reporting vision difficulty and those who are not self-reporting vision difficulty were, respectively, significantly different (p < 0.01). in relation to business activities some households reported multiple responses for the types of business activities they were involved in; meaning that they are involved in several business activities. in addition, when a business activity is reported for a household, every individual in that household is reported to be engaged in that business activity regardless of who is taking part in the type of business. considering this, removing minors from the analysis would be speculative. this is because most of these businesses are operated from home and minors are exposed to similar environments as adults. for example, a 10-year old child may assist in selling goods or services in their family spaza [tuck shop] after school. about 7% of the respondents reported that they were involved in the selling of goods and services on the streets. other business activities mentioned involved hair salons, welding, panel beating, vehicle repairs, wedding planners, property owners and carpenters. the self-reported vision difficulty for the different categories ranged from a high of 20% (30 out of 150) for those in the wood or fuel business and a low of 8% for those transporting goods. health and education needs were highest amongst respondents, 20.7% and 19.6% respectively, whilst social and documentation needs were 9.7% and 9.3%, respectively. the results show that 21.8% of the respondents with health needs self-reported that they have vision difficulty, with 5.8% of the respondents with educational needs self-reporting vision difficulty. there is a significant relationship between self-reporting of vision difficulty and education needs (p < 0.01) and/or health needs (p < 0.01). however, there was no significant relationship between self-reporting of vision difficulty and documents needs (p = 0.91). in addition, no significant relationship was found between self-reporting of vision difficulty and social needs (p = 0.20). the respondents with education needs were 0.42 (95% ci: 0.35% – 0.49%) times less likely to self-report vision difficulty than those who had no education needs (p < 0.01). the respondents with health needs were 3.04 (2.50 – 3.69) times more likely to self-report vision difficulty that those without health needs (p < 0.01). ethical considerations ethical clearance for presenting data extracted from the wopc database was received from the university of kwazulu-natal humanities and social sciences research ethics committee and the south african department of social development. data protection the primary research that informed this article was conducted by the government (department of social development) in areas defined as economically disadvantaged in south africa. although the survey instrument used collected household members names and addresses, the data that were retrieved from the department of social development were anonymous. thus the responses received were not linked to any particular individual or households. trustworthiness secondary data were employed; therefore, particular information pertaining to questionnaire development and data collection process was carefully examined so as to inform the analysis methods and the limitations of the research results. reliability this research employed a quantitative approach; therefore the meaning of reported numbers will remain consistent over time. the questionnaire used was a revised version of a preceding similar study after removing ambiguous sections. in addition, the sampling entailed the profiling of wards in south africa, followed by conducting censuses in the selected wards which increased the sample size making the estimates accurate for the population. validity validity determines if the research truly measures what it is intended to measure (joppe 2000). the questionnaire did not include leading questions that may skew the responses. sections were constructed to elicit particular data needed to assess socioeconomic status. the question relating to vision difficulty was either ‘yes’ or ‘no’ without any follow-up questions, reducing conflicting responses. vision difficulty was self-reported by the respondent without any incentive offered such as the provision for eye care. discussion top ↑ the prevalence of self-reported vision impairment or blindness found in this study (11.2%) is lower than the prevalence found in other prevalence studies (bucher & ijesselmuiden 1988; cook, night & crofton-briggs 1993). previous studies in south africa were epidemiological evaluations which depended on objective measures such as visual acuity. household size was a significant factor in the self-reported vision impairment. this could be the result of lesser resources or that limited resources have to be prioritised and vision is, thus, not high on the agenda when such choices have to be made. however, there is no definitive data to conclude this and further investigation in this regard will be useful. when resources are limited, families prioritise certain expenses or services with women and girls being considered less of a priority (courtright & lewallen 2007:68, 2009:18), especially if women are unemployed. furthermore, if they are not working, they are not in the position of making decisions on eye health expenditure. this may explain the higher level of vision impairment self-reported by women in comparison to men. there is no clear trend in the self-reporting of vision impairment and education. whilst the percentage of respondents (12.3%) with primary schooling self-reporting vision impairment was higher than those with no formal education (11.5%), those with high school education and vision impairment (10%) was lower than that for both primary education and no formal education. these results could have been influenced by the fact that 3% of the sample did not state their level of education although this group had 14.7% vision impairment. alternatively, it could be that in south africa, given the high levels of unemployment, a school leaving certificate may be of limited value in finding jobs, as preference is generally given to the unemployed university graduates and, as such, many people are likely to be in a similar situation to those with lesser school education. the categories with the least expenditure and the most expenditure have the highest prevalence of vision impairment. if we take expenditure as a proxy for income and level of poverty this may be explained by the fact that those with the least income are less likely to access eye care services. conversely those with the highest level of income are more likely to have jobs with a higher demand for vision tasks such as administration jobs and are more affected by the lack of vision correction or by vision impairment because of other causes. employed individuals and those with a higher family income have a higher prevalence of self-reported vision impairment. this could be a consequence of greater vision demands in work situations, which impacts subjectively on an individual as opposed to someone who does not have a great demand for vision. this would be particularly relevant in situations where near vision is demanded, such as for reading or sorting out products. two of the four provinces (western province and north west province) which self-reported the highest level of vision impairment do not have optometrists employed in the public sector. these provinces are better resourced than some of the other provinces but for the poor very little affordable options exist when they cannot access public sector optometrists and affordable spectacles. given that refractive error was found in an epidemiological study to be the major cause of vision impairment in south africa (naidoo et al. 2013:113), the lack of optometrists and public sector access to spectacles may explain this disparity. the higher self-reported vision difficulty in smaller families could be related to the fact that smaller households are composed of pensioners whose children live elsewhere and, as such, the relative influence of age-related conditions such as cataracts and presbyopia on vision impairment is magnified. the study showed that there was a steady increase in self-reported vision impairment from age 40 years and onwards, a peak prevalence at around 60 years and a subsequent decline post age 60 years, which correlates with the onset of presbyopia (ages 35–40 years) and cataracts (ages 55–60 years). south africa enjoys one of the highest cataract surgery rates in sub-saharan africa; despite this a significant backlog of services exists. the current cataract surgical services may therefore explain the post age 60 years decline. those with health needs self-reported the highest percentage of vision impairment compared to social, documentation and education needs. the lack of health services in general could be indicative of the lack of access to eye care services for affected individuals and communities. this could also be influenced by other co-morbidities such as hiv, diabetes and hypertension leading to a prioritisation of health care needs amongst respondents. some of these conditions also impact vision. limitations of the study this study has limitations as the questions regarding vision difficulty were limited in the wopc questionnaire. further in-depth interviews and questions pertaining to poverty and vision difficulties will provide more information on the link between socio-economic status and vision problems. unfortunately this was not possible at this stage, as the investigators analysed secondary data that were extracted from the wopc questionnaire. a further limitation to the study was that vision difficulty in young children can be problematic to report as they are unable to effectively complain about an eye condition. in addition, it is difficult for parents to identify and report when young children have vision problems or diseases as many poor households do not access adequate health services to be able to detect vision problems early, unless they are severe or have been detected at birth. conclusion top ↑ the results of this study serve as an indicator of people's perception of their vision status and difficulties experienced. the evidence from this study suggests associations between socio-economic factors and vision difficulties that have a two-fold relationship: some factors, such as access to eye health services may lead to vision difficulty whilst vision difficulty may trap people in their current poverty or deepen their poverty status. however, the responses of the subjects do not indicate a clear relationship between income and employment and vision difficulty in kwazulu-natal as income was scarcely reported by the subjects enumerated and there is a higher prevalence of vision difficulties amongst the employed individuals in comparison with those who indicated that they were unemployed. despite this, it should be noted that many individuals were found to be employed in areas of work that are likely to require good vision and perform tasks that may have increased vision demands, which may present vision difficulties such as painting, bricklaying welding, plastering plumbing. however given the relationship between vision demands and a greater awareness of vision impairment in work situations, it is necessary to investigate further the unemployed group via clinical evaluations as well as comprehensive qualitative studies to determine if a vision difficulty restricts their capacity to gain employment. there are also other dimensions to poverty such as social well-being, health and living conditions, and others, which impact on vision but have not been investigated in this study in relation to vision difficulty. the current data are therefore insufficient to examine this relationship. the results should therefore be considered as indicative of further areas for research. the authors have earlier presented specific research questions that need further investigation on poverty and eye health (jaggernath et al. 2014:1855). research areas that emanate from the intrinsic results and limitations from this study that are specific to the south african context, are highlighted in table 3. table 3: research areas emanating from the study. acknowledgements top ↑ the authors would like to express gratitude to the south african government's department of social development for access to the war on poverty campaign (wopc) data. we also thank the vision cooperative research centre (vcrc) for supporting the contribution of the african vision research institute to the poverty and eye health project. competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions k.s.n. (brien holden vision institute, african vision research institute) made a substantial contribution to the research design, was responsible for conceptualisation of the research and coordination of the research manuscript. j.j. (university of kwazulu-natal, vision cooperative research centre), p.r. (orbis) and f.c. (brien holden vision institute, african vision research institute) were responsible for research design and analysis of the data and the write-up of the research findings. t.z. (department of social development) was responsible for data collection performed by that department and made intellectual contribution in the manuscript. l.ø. 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http://econ.worldbank.org/external/default/main?pagepk=64165259&thesitepk=469372&pipk=64165421&menupk=64166093&entityid=000158349_20120307084323 world bank, 2015a, ‘data: gdp per capita (current us$), world bank national accounts data and oecd national account data files’, viewed 11 march 2015, from http://data.worldbank.org/indicator/ny.gdp.pcap.cd/countries world bank, 2015b, ‘data: poverty headcount ratio at $2 a day (ppp) (percentage of population), world bank national accounts data and oecd national account data files’, viewed 11 march 2015, http://data.worldbank.org/indicator/si.pov.2day world health organisation (who), n.d., ‘global initiative for the elimination of avoidable blindness: action plan 2006-2011’, who, geneva, viewed 10 march 2015, http://www.who.int/blindness/vision2020_report.pdf abstract background methods and analysis results discussion conclusion acknowledgements references appendix 1: pre-training general information form appendix 2: questionnaire on knowledge appendix 3: post-training and reflection form about the author(s) takondwa c. bakuwa department of physiotherapy, college of medicine, university of malawi, blantyre, malawi sonti pilusa department of physiotherapy, university of the witwatersrand, johannesburg, south africa gillian saloojee malamulele onward npc, johannesburg, south africa citation bakuwa, t.c., pilusa, s. & saloojee, g., 2020, ‘the value of a short practical training course for newly qualified therapists working with children with cerebral palsy in south africa’, african journal of disability 9(0), a610. https://doi.org/10.4102/ajod.v9i0.610 original research the value of a short practical training course for newly qualified therapists working with children with cerebral palsy in south africa takondwa c. bakuwa, sonti pilusa, gillian saloojee received: 14 dec. 2018; accepted: 28 nov. 2019; published: 21 apr. 2020 copyright: © 2020. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: cerebral palsy (cp) is the most common and most complex disabling disorder in children. newly qualified therapists are expected to manage cp despite feeling inexperienced and inadequately prepared. short postgraduate practical training courses could potentially help bridge this readiness gap. however, the value of these short courses in addressing the knowledge and experience gap is unknown. objectives: to establish the value of a short practical training course on the self-perceived readiness of newly qualified south african trained therapists to work with children with cp. method: secondary analysis of records on therapists’ immediate evaluation of a short practical training course on cp management was completed. the analysis included records from 11 courses collected over a 2-years period (2015–2017). paired t-tests were used to determine the change in knowledge in the quantitative questionnaire. qualitative data were analysed inductively to determine themes. results: the majority of therapists had their expectations met by the course. therapists’ self-perceived level of knowledge about various aspects of cp after the course changed significantly. therapists appreciated the adult teaching and learning methods, conducive learning environment, the relevant and organised content and holistic approach of the course. they demonstrated readiness to adopt positive attitudes, perceptions and practice following the course. conclusion: a short practical postgraduate training course in cp is valuable in addressing the self-perceived lack of readiness amongst therapists with little experience in this area. it is capable of improving the knowledge and changing attitudes, perceptions and practice intentions positively, and thereby potentially improving the quality of service offered to children with cp. keywords: continuing professional development; newly qualified therapists; cerebral palsy management; short practical courses; south africa. background newly qualified therapists in south africa are required to complete 1 year of mandatory community service after their 4-year undergraduate training as a means of increasing human resource in underserved areas (naidoo, van wyk & waggie 2017; singh, booth & cholo 2015). however, there is evidence that newly qualified rehabilitation therapists in south africa, including speech therapists, occupational therapists and physiotherapists, do not feel ready to work in primary healthcare settings. studies have highlighted the inability of undergraduate training to adequately foster resilience, reflective practice and contextualised learning (mostert-wentzel, frantz & van rooijen 2013a; ramklass 2009a). inadequate nurturing and lack of support provided to newly qualified therapists have also been reported (naidoo et al. 2017; van stormbroek & buchanan 2016). given the fact that newly qualified staff members feel unprepared for work in primary health settings and in resource-limited environments, a need for continual professional training after graduation exists. recommendations have been made regarding continuing professional development (cpd) for newly qualified therapists already practising in south africa (singh et al. 2015). suggestions include the formation of virtual communities of practice, mentorship programmes and postgraduate focused short training courses (mostert-wentzel, frantz & van rooijen 2013b; naidoo et al. 2017; van stormbroek & buchanan 2016). focused training courses in the form of cpd short courses can equip rehabilitation therapists with practical evidence-based techniques and communication skills to foster therapeutic relationships and experiences of working in a local community setting (grace et al. 2017; gunn & goding 2009; singh et al. 2015). postgraduate training courses employing adult learning principles that are largely practice based have been found to be ideal for enhancing learning that is relevant to ‘real-life’ situations, and therefore improving competence (grace et al. 2017; singh et al. 2015). the adult learner prefers an environment that is non-threatening to self-expression, which allows mutual feedback, experiential learning and active engagement in practical learning (chipchase, johnstone & long 2012). in a south african study, dieticians, occupational therapists and physiotherapists reported a preference for formal practice-based cpd forums where they could learn from experts (van vuuren & nel 2013). they perceived that observing experts demonstrating practical skills would enhance skills acquisition (van vuuren & nel 2013). cerebral palsy (cp) is one of the most complex health conditions occurring in childhood as it includes a variety of associated impairments that limit functional activity and participation in a child’s life (brew et al. 2018). cerebral palsy remains a challenge in africa as children with cp tend to present with more severe degrees of disability compared to other cohorts worldwide (bearden et al. 2016; cooper 2015). being a lifelong condition, the needs of a child with cp will vary with age, family circumstance and the availability of resources in the community setting. cerebral palsy is therefore an area that newly qualified therapists are likely to find difficult to manage, particularly in a low-resource setting where hospitals have a high caseload of children with cp (adan 2016). there is limited evidence on the extent to which cp is regarded an area of difficulty for occupational and physiotherapists. however, in a few studies, newly qualified speech therapists have reported difficulties with managing cp, especially in the area of dysphagia (singh et al. 2015; wranz 2011). in these studies, speech therapists perceived themselves as having the required knowledge but lacking in confidence with skills to deliver services at community levels (singh et al. 2015; wranz 2011). both studies highlighted the need to strengthen undergraduate curriculum so that it would provide more opportunities for the acquisition of practical skills. the studies also highlighted the need for continued learning opportunities for the newly qualified therapists. to bridge the gap of cpd in the area of cp, malamulele onward, a south african non-profit organisation (npo number: 2006/032287/08) based in johannesburg, has been offering practical training courses on cp for newly qualified therapists since 2014. the organisation’s aim is to offer innovative solutions to improve the quality of life of children with cp and their families living in rural resource-constrained settings. it is the first organisation to champion parent-led cp programmes in south africa (burton 2015), which has contributed to reduction of burden of care and improvement of quality of life amongst parents and caregivers (adan 2016; burton 2015). their influence and contribution to cp care extends to most parts of south africa and neighbouring countries like lesotho and rwanda (burton 2015). whilst the value of its work with parents and families of children with cp has been evaluated in various ways, the value of the short training courses for therapists working in the rural and low-resourced areas has not been formally evaluated. this study was conducted as the first step towards evaluating the value of the short practical training courses for therapists offered by malamulele onward. evaluating the value and impact of formal cpd short courses is imperative for short course programme improvement (campbell, taylor & douglas 2017). the authors realise that course evaluation is a multi-stage process that can be done at different levels, namely, the effect on the participants’ self-efficacy, the effect on professional behaviour and the effect on healthcare outcomes (sinclair et al. 2016). moreover, the evaluation can be divided into four logical steps that trace the effects of training in a successive order or interlined manner (campbell et al. 2017; coldwell & simkins 2011). the first level identifies participants’ reaction to the training course. this includes satisfaction with the course delivery and also deliverables. the second level assesses participants’ learning in terms of acquisition of knowledge and skills, whilst the third level assesses transferability of learning in terms of change in behaviour of practice. the fourth level assesses desired results in terms of the overlying impact of changes in practice for the institution or organisation (campbell et al. 2017; coldwell & simkins 2011). the scope of the evaluation in this study describes the first stage of evaluation that captures participant reactions, including self-perceived change in knowledge, attitude and clinical practice intention. hence, the aim of this study was to establish the value of a short practical training course in the management of cp for newly qualified therapists. this will contribute to the body of knowledge in postgraduate cpd course evaluation considering that there is a paucity of data on evaluation of courses by therapists in south africa. specific objectives of the study included the following: to establish whether the expectations of the therapists who attended the cp practical training course were met; to determine the change in self-perceived knowledge regarding cp amongst the therapists as a result of completing the course; to describe the self-perceived change in attitude, perception and intention to clinical practice regarding cp amongst the therapists as a result of completing the course; and to describe elements perceived as essential components of a short course on cp by the therapists. methods and analysis study design this study was a secondary analysis of course evaluation data collected during 11 courses offered by malamulele onward between 2015 and 2017. course description and structure the short practical course for rehabilitation therapists comprised 6 days of intensive teaching, practical treatment, discussions and reflection sessions. the objectives of the course included equipping therapists with practical understanding of the different types of cp, classification of cp, treatment and management ideas for the different types of cp, functional goal setting according to the type of cp, incorporation of play, communication and functional visual training into the child’s daily routines, basics on feeding techniques (safe eating and drinking), implementing a 24-h postural management programme, group rehabilitation, making basic equipment for children with cp and working effectively and respectfully with parents and caregivers. the course was largely practice-based and participatory. it was administered by an interprofessional team of experienced speech therapists, occupational therapists and physiotherapists. actual children with cp and their caregivers were involved in all courses to reinforce the practical sessions. the methods of course delivery, approach to learning, the theory content, skills and experience of facilitators were consistent over the period included in this study. the course was open to all therapists (physiotherapists, occupational therapists and speech therapists) working with children with cp and was accredited 30 cpd points. the majority of the therapists attending the course were newly qualified therapists. participating therapists completed a general information form that captured details of the background of participants, including their professions and workplace (appendix 1). in addition, the form also captured information on expectations of the therapists from the course. participants also answered a questionnaire on knowledge intended to determine their perceptions of their baseline level of knowledge regarding the different aspects of cp addressed in the course (appendix 2). at the end of the course, the questionnaire on knowledge was administered again. participants were asked to rate their knowledge again to determine their post-training level of knowledge. at this point, the therapists were asked to rate their knowledge before the course again so as to actually capture a true reflection of their perceived knowledge before the course ‘now that they have been on the course’. against this, they were asked to rate what they perceived as their new level of knowledge following the course. participants also completed a course evaluation form that included sections on overall satisfaction with the course, feedback on course delivery and learning (appendix 3). all course participants were informed that the forms would be used to formally assess the courses at a later stage. the participants were given the option to indicate if they did not want their records to be included in future research. in this way, facilitators of the course obtained verbal informed consent for use of the records for research purposes. study participants the study included all records of therapists who attended the malamulele onward 6-day training courses between april 2015 and may 2017. inclusion criteria: records of speech therapists, physiotherapists and occupational therapists with equal to or less than 4 years of working experience since obtaining their undergraduate qualification. exclusion criteria: records of mid-level workers or non-therapists (e.g. dieticians) who attended the course and records of therapists with greater than 4 years of experience since obtaining their undergraduate qualification. data collection tools data were collected by using three tools: the general information form (appendix 1) which was designed to capture the demographic data of the therapists, including their professional background and practice experience. it also sought information on the expectations of the therapists from the course. the knowledge questionnaire (appendix 2) which was a 15-item closed-ended questionnaire. therapists were asked to rate their own perceptions of their level of knowledge regarding the 15 different aspects of cp on a scale of 1 to 10. the same questionnaire was administered twice: before and after the course. the evaluation form (appendix 3) which comprised both closedand open-ended questions designed to seek feedback on the delivery of the course, overall satisfaction with the course and readiness to change clinical practice behaviours. the last part of this form was evaluation in terms of the ‘way forward’. there was a special prompt that was given to help participants identify what they would do differently following the course. the special prompt was an open-ended prompt: ‘before i used to…now i will…’ (see appendix 3). validity and reliability of the tools the tools used to collect evaluation data were developed by the malamulele onward therapy team comprising a physiotherapist, occupational therapist and speech therapist in 2014. the tools were based on their clinical experience as well as the objectives of the course. the aim was to develop evaluation tools that could adequately assess both the theory and application to clinical practice and service delivery as stipulated by the family-centred approach (fca) (mcdowell, duffy & parkes 2015). this would also constitute valuable feedback for the course facilitators in terms of areas needing improvement as well as a greater understanding of the participants’ needs and their current practice. the original knowledge questionnaire contained 17 items. the general information form had 10 sections, whilst the evaluation form had five sections. the tools were piloted on one of the first courses in 2014 for face validity and clarity. areas of apparent lack of clarity, redundancy or incompleteness were identified. the tools were revised by the same team in 2014. the tools were piloted again in 2015 in the subsequent course. the final version of the knowledge questionnaire therefore contained 15 items. the general information form maintained the 10 sections. a section that specifically prompted participants to contrast former tendencies and new things they were planning to adopt after the course was added to the evaluation form. data analysis methods a mixed-methods approach was used to analyse the data. quantitative data regarding the profile of participants were analysed using frequencies and means, whilst change in the self-perceived level of knowledge was determined using paired t-tests. all quantitative analyses were performed using stata software package version 14. qualitative data analysis was based on kirkpatrick’s level model framework for course evaluation as described by campbell et al. (2017). particularly, the analysis focused on kirkpatrick’s level 1 of course evaluation, which describes the reaction of participants to a course delivered to them (campbell et al. 2017). the qualitative data were extracted from the forms and collated into three microsoft word documents with predetermined categories, namely, expectations, aspects identified as useful and intention to change. categorical content analysis was completed for each group of text, which involved coding of data and organising codes with similar foci into categories and subcategories (gondim & bendassolli 2014). maxqda software package was used to manage and sort the codes. dependability and confirmability were the two elements of trustworthiness which were particularly important for this study as it was a secondary analysis (anney 2014; cope 2014). to ensure dependability, the data underwent a code-recode process, whereby all three of the researchers involved analysed selected sections of the data independently to check for agreement in the codes. in the case of disagreement in the codes, data were re-analysed until agreement was achieved. to demonstrate that the ultimate interpretations truly originated from the participants’ own words and not the researcher’s own biases (confirmability), the researcher reviewed all 163 records available with the aid of the maxqda software analysis package. all responses were considered and inductively built from singular units to codes and into overarching categories. ethical considerations ethical clearance to conduct the study was obtained from the ethics and research committee of university of the witwatersrand (ethical clearance number: m170833). results study records eleven courses were completed during the 2-years study period (i.e. april 2015 to may 2017), yielding a total of 223 participant records. sixty records were excluded as they were records of participants who had more than 4 years of work experience and/or records of participants who were non-therapists. therefore, 163 records were included in the study. however, a minimum of 129 records were used to determine the change in level of knowledge. this is because some records had missing scores on the questionnaire on knowledge and hence paired t-tests could not be performed for those specific records. a power analysis computed in stata/ic version 14, using a sample of 129 records, provided a 100% power to detect an effect size (standardised mean difference), assuming 5% significance level. profile of participants the majority of course participants had less than 2 years of work experience and were from all of the eight south african training universities. the participants also worked in all the provinces except limpopo. more than half (n = 91; 56%) of the participants were occupational therapists, as summarised in table 1. table 1: profile of participants who attended the course. participants’ expectations of the course almost all (n = 159; 97.5%) of the participants reported that the course met their expectations, whereas 2.5% (n = 4) reported that the course did not meet their expectations or had mixed feelings (table 2). table 2: participants’ expectations of the course. change in self-perceived level of knowledge regarding cerebral palsy following the course, there was a significant change in participants’ self-perceived level of knowledge (p < 0.001) in all five areas of cp covered in the course (table 3). table 3: participants’ self-perceived change in level of knowledge about cerebral palsy. self-perceived change in attitude, perception and clinical practice intention the analysis of qualitative data under the theme of perceived areas of change following the course revealed three categories. these were change in attitude, change in perception and change in clinical practice intentions. in the categories of change in attitude and perception, the participants expressed a willingness to adopt more positive attitudes and perceptions towards working with children with cp in terms of being more confident and positive in their reception and expectations of the children (table 4). table 4: participants’ self-perceived change in attitude and perception towards children with cerebral palsy. in the category of change in clinical practice intentions, the participants reported several areas where they intended to change their way of practice. these areas could be further grouped into four subcategories: approach to child management, caregiver involvement, service delivery and continuity of care (table 5). table 5: participants’ self-perceived change in clinical practice intention regarding cerebral palsy management. elements identified by participants as essential components of a short practical course four subcategories were identified under the category of ‘aspects of the course that participants considered essential’. these included adult teaching and learning methods, conducive learning environment, holistic approach and relevant course curriculum (table 6). table 6: elements identified by participants as essential components of the course. discussion the profile of therapists attending this short course represents graduates from all south african training institutions who worked in eight of the nine provinces at the time of doing the course. although not statistically representative of the larger population of newly qualified therapists in south africa, the variation in the sample may have provided important insights especially in the qualitative data. more than two-thirds of the participants were therapists with less than 2 years of work experience. this demonstrates that newly qualified therapists were particularly interested in developing their skills through attending the short course. in agreement with this, studies have shown that cpd is especially important during the critical years when a professional transitions from being a student to being a practitioner (singh et al. 2015). newly qualified therapists particularly seek to develop confidence, professional identity, interpersonal skills and practical field-specific skills (moores & fitzgerald 2017). in south africa, most therapists with less than 2 years of experience will be doing community service in rural or underserved areas where working conditions are relatively challenging (naidoo et al. 2017; singh et al. 2015). hence, newly qualified therapists will be more attracted to cpd activities that offer them opportunities to learn through practical and interprofessional approaches (naidoo et al. 2017), and this was confirmed in this study. another factor accounting for this observation is that the malamulele onward practical training course was particularly targeted at newly qualified therapists and therapists with little experience in working with children with cp; hence, the fact that the majority of course participants had less than 2 years of experience is not that surprising and suggests that the organisation is reaching its target market. a majority of the course participants were satisfied with the course, with some even expressing that their expectations had been exceeded. they felt that the course had been informative, comprehensive, experiential and practical, and a positive learning experience, with good learning resources. the interprofessional approach and close integration of theory and practice were qualities that exceeded the participants’ expectations. however, there were a few who were not satisfied with the course. they expressed that the course was more oriented to occupational therapy and physiotherapy, which suggests that they were speech therapists. they felt that the aspect of communication had not been addressed as much as they had expected. whilst this may indeed be an area of training need for speech therapists, the interprofessional nature of the course may not have allowed for in-depth teaching of specific intra-professional topics. the aim of the course was to expose therapists to the roles of the other professions in a way that could reinforce team and holistic approaches. this specific finding may also suggest a need for profession-specific courses for speech therapists to adequately address this very specific technical skill. nevertheless, there is room for improving the course in a way that could increase the intra-professional gains for speech therapists. the initial self-perceived knowledge levels, attitudes, perceptions and clinical practice tendencies of participants in this study confirm that the newly qualified therapists in south africa feel unprepared to work with complex conditions in low-resource settings and hence support the need for cpd as suggested by naidoo et al. (2017) and singh et al. (2015) in their studies concerning preparedness of newly qualified therapists. moreover, just as previous studies have suggested gaps in the community and public health curricula of therapists in south africa (naidoo et al. 2017; mostert-wentzel et al. 2009a), this finding may also suggest gaps in undergraduate curricula in the area of cp. the before-and-after evaluation showed a positive change in knowledge, attitude and clinical practice intention of the participants. these outcomes from short practical training courses are similar to those observed in a practical cpd course that targeted clinical decision-making and use of evidence-based practice in paediatric rehabilitation by physiotherapists in rwanda (clark et al. 2018), short skills training course for critical care for sri lankan physiotherapists (tunpattu et al. 2018) and a practical course on evidence-based practice for irish occupational therapists (brangan, quinn & spirtus 2015). the before-and-after course assessments in these studies demonstrated improvement in knowledge levels, positive change in attitude and readiness to change clinical practice. this confirms that a targeted short practical training course is effective for positive change in a particular area. in particular, the area of communication and play showed the greatest significant difference in self-perceived improved knowledge. this is not surprising as these elements were the competencies therapists were not confident with before the course. this was mostly attributed to perceived inability to interact with a child with a disability. this is similar to findings in a case report by clark et al. (2018) describing an education intervention model for physiotherapists working in paediatric rehabilitation in rwanda. during the education intervention, the concept of playing and communicating with the child during therapy seemed to be a ‘paradigm shift’ for rwandan physiotherapists. before gaining the practical knowledge regarding play and communication, they were observed to approach the treatment of a child in a ‘perfunctory and serious manner’ (clark et al. 2018:7). this suggests that therapists have a poor background in training on the concepts of play and communication, particularly in children with a complex disability such as cp. undergraduate training is probably limited in terms of allowing for adequate development of these specific skills. whilst there is room for improving this side of undergraduate training, cpd platforms such as short practical training courses could also help bridge these gaps in such specialised areas as shown in this study. it is likely that the four aspects of the course that participants identified as essential components contributed to their successful learning. they perceived that relevant course content was delivered using adult teaching and learning methods, including the large practical component, both peer and expert learning, and constant feedback and reflection. this is consistent with the cpd preference that south african allied health professionals have reported in a comparative study conducted by van vuuren and nel (2013). in this study, therapists reported that they preferred cpd in the form of ‘small work groups rather than large formal lectures’ where they can engage in active learning and skills acquisition in relevant subjects (van vuuren & nel 2013:45). the findings are also in agreement with the theories of adult learning described in the literature that hold the view that adults learn through practical engagement, peer sharing and expert feedback (clark et al. 2018; grace et al. 2017). therefore, when designing short courses, the relevance of course content and principles of adult learning should be considered in order to meet the participants’ needs. participants in this study reported that the learning environment was conducive in that they felt comfortable and unthreatened in expressing their own ideas and making mistakes as they learned. they also felt that there was constant feedback, lots of sharing amongst peers and guidance from the facilitators whom they perceived as experts. this is consistent with adult learning theories which propose that adults prefer a learning environment that is safe, robust and accommodative (gooding, mann & armstrong 2017; grace et al. 2017). therefore, as much as facilitators need to employ good and multiple teaching methods, they also need to ensure that the learning environment is conducive for learning. the course was interprofessional with the unique feature of involving the caregiver as part of the team throughout the course. in this way, there was interaction and practical input from all members of the rehabilitation team participating in the course. this highlights the importance of interprofessional learning in fostering practical understanding of holistic healthcare. interprofessional learning has been identified as a means of teaching undergraduate students to start learning how to collaborate and value shared decision-making and contribute in holistic patient care (maharajan et al. 2017; walkenhorst et al. 2015). this study has demonstrated how useful interprofessional learning can be even for qualified health professionals. moreover, the special feature of involving the caregiver resonates well with the fca, which is the gold standard of child rehabilitation (chiarello et al. 2016). the approach describes the mother (or child’s family) as having a crucial role in decision-making and implementation of rehabilitation plans (chiarello et al. 2016; mcdowell et al. 2015). therefore, the relationship between therapists and the child’s family (caregiver) has been best described as a ‘partnership’, where there should be close collaboration throughout all processes and stages (novak 2014). this has been demonstrated in this study, with participants recognising the caregiver as a source of ideas and insight into the child’s needs. therefore, the interprofessional approach is an essential component to consider for managing and understanding such complex conditions as cp. conclusion newly qualified therapists in this study perceived that a 6-day practical training course increased their level of knowledge, awareness of basic skills and confidence with cp management. they also perceived a positive change in their attitudes towards children with cp and their clinical behavioural intentions regarding cp management. participants in this study also identified components of the short course that they found essential to their learning, namely, utilisation of adult teaching and learning principles such as experiential learning with an actual child with cp, provision of relevant course content such as content on communication and play, provision of a conducive learning environment and the holistic approach that was achieved through interprofessional learning. implication of the findings the findings of a lack of readiness amongst newly qualified therapists to manage cp shown in this study may be true for most newly qualified therapists in south africa. in this study, most of them reported a lack of knowledge and skills transferable to settings with low resources, including the use of active (as opposed to passive) therapy modalities, equipment making and creativity in play and communication therapies. this could imply a need to strengthen undergraduate training inputs in these areas using methods such as experiential learning, interprofessional learning and mentoring. this study highlights cpd support in terms of short training courses on specific complex conditions like cp as a vital tool to be employed for all newly qualified therapists for the specific purpose of bridging the readiness gap during the transition from student to therapist. it is possible that the course would benefit any other long-serving therapists who may not have the necessary background for managing cp. however, further follow-up and mentoring are necessary to ensure the translation of new skills into routine practice. limitations of the study owing to the nature of the study, member checking and test–retest reliability checks of the data collection tools were not done, which might have potentially limited the trustworthiness of the information gathered. secondly, the way qualitative data were collected did not allow the researchers to draw comparisons between the three professions. isolating profession-specific information would have been valuable for providing profession-specific feedback. in addition, all outcomes were self-perceived measures and not objective measures. this limited the insight into the actual effect of the course on the therapists. moreover, although the study set out to focus on newly qualified therapists, it included records of therapists with up to 4 years of working experience, which may be considered significantly more than the experience of a community service therapist in south africa. this may have accounted for significant differences in the outcomes of the study. lastly, the study only involved a before-and-after training assessment, which provided no information as to what extent the course helped to change practice. recommendations future research should be conducted to determine if gains from the course translate to actual change in clinical practice of the participants and improvements in actual patient outcomes. future research should involve, for example, sending a 6-month follow-up questionnaire, or doing hospital visits to determine the extent to which participants retain and implement the gains from the course. moreover, additional robust means of collecting data, such as focus groups, should be employed to get more in-depth and richer information on the value of the short practical courses in cp. in addition, comparative studies in this area should be structured in a way that clearly highlights how prior exposure to cp, differences in discipline of therapists and years of experience in cp management affect the study outcomes in a similar study. public health policies should promote cpd activities in complex areas of rehabilitation for newly qualified therapists. this could be in the form of provincial rehabilitation managers sponsoring therapists to attend such courses, hence improving the affordability and accessibility of such opportunities to newly qualified therapists. acknowledgements the authors would like to thank to malamulele onward npc (non-profit company) for granting access to their course evaluation database. they also thank the college of medicine malawi and global aids interfaith alliance for their support. competing interests the authors have declared that no competing interests exist. authors’ contributions t.c.b. was responsible for the conception of the study and drafting of the protocol, analysis and interpretation of data and write-up of the article. s.p. and g.s. were responsible for the guidance with refining concept, analysis, interpretation and critical revision of the manuscript. funding information s.p. (supervisor) is supported by the consortium for advanced research training in africa (carta). the carta is jointly led by the african population and health research center and the university of the witwatersrand and funded by the carnegie corporation of new york (grant no-b 8606.r02), sida (grant no:54100113), the deltas africa initiative (grant no: 107768/z/15/z) and deutscher akademischer austauschdienst (daad). the deltas africa initiative is an independent funding scheme of the african academy of sciences (aas)’s alliance for accelerating excellence in science in africa (aesa) and supported by the new partnership for africa’s development planning and coordinating agency (nepad agency) with funding from the wellcome trust (uk) and the uk government. the statements made and views expressed are solely the responsibility of the authors. the funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. data availability 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2015, ‘position statement gma committee: interprofessional education for the health care professions’, gms zeitschrift für medizinische ausbildung 32(2), doc22. https://doi.org/10.3205/zma000964 wranz, e.s., 2011, ‘compulsory community service for speech-language and hearing therapy professionals: readiness, reality and readjustment’, master of philosophy report, university of stellenbosch, stellenbosch, viewed 19 june 2018, scholar.sun.ac.za/handle/10019/6599. appendix 1: pre-training general information form appendix 2: questionnaire on knowledge appendix 3: post-training and reflection form abstract introduction problem statement conceptual framework research methods and design results discussion conclusion acknowledgements references appendix 1 appendix 2 about the author(s) naeema a.r. hussein el kout department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa sonti pilusa department of physiotherapy, faculty of health sciences, university of the witwatersrand, johannesburg, south africa khetsiwe dlamini masuku department of speech pathology and audiology, faculty of health sciences, university of the witwatersrand, johannesburg, south africa citation hussein el kout, n.a.r., pilusa, s. & dlamini masuku, k., 2022, ‘a review of the framework and strategy for disability and rehabilitation services in south africa’, african journal of disability 11(0), a893. https://doi.org/10.4102/ajod.v11i0.893 original research a review of the framework and strategy for disability and rehabilitation services in south africa naeema a.r. hussein el kout, sonti pilusa, khetsiwe dlamini masuku received: 22 may 2021; accepted: 26 july 2022; published: 15 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: rehabilitation is imperative for the successful integration of persons with disabilities into their social environments. the framework and strategy for disability and rehabilitation services (fsdr) in south africa, 2015-2020.was developed to strengthen access to rehabilitation services and ensure the inclusion of persons with disabilities in all aspects of community life. despite the fsdr being commissioned, access to rehabilitation is a challenge for persons with disabilities and further compounded in rural communities. objective: the study aimed to describe the barriers and facilitators that influenced the process of development, implementation and monitoring of the fsdr. method: this qualitative study employed a single case study design. data was collected through document analysis and in-depth interviews utilising the walt & gilson policy analysis framework that outlines the context, content, actors and process of policy development and implementation. in-depth interviews were conducted with twelve key informants (n=12) who were selected purposively for the study. data obtained from the in-depth interviews were analysed using inductive thematic analysis. results: we found many factors that influenced the implementation of the framework. actor dynamics, insufficient resources, the rushed process, poor record-keeping, inappropriate leadership, negative attitudes of staff members and the insufficient monitoring impeded the successful implementation of the framework. while positive attitude, mentorship and support amongst the task team facilitated the implementation process, albeit with challenges. conclusion: there is a need to address implementation gaps so that the fsdr is responsive to the current rehabilitation needs of persons with disabilities in south africa. contribution: this study may inform future disability policy, and can be used as a tool to advocate for the rights for persons with disabilities keywords: rehabilitation; access; framework and strategy for disability of south africa; policy; actors; processes; context; content. introduction approximately 80% of the global population of persons with disabilities is in developing countries (united nations 2019). to date, statistics on the prevalence of disability in south africa are inconsistent. for example, in 2016, the national prevalence of disability was estimated to be 7.5% (statistics south africa 2014), a percentage that does not include children under the age of 5 years old and people presenting with psychological and neurological conditions (sherry 2014). on the contrary, the world health organization (2011), using data obtained from the world health survey between 2002 and 2004, reported a disability prevalence of 15% globally and 24.2% in lower-income countries. the quadruple burden of disease influences the prevalence of disability in south africa, particularly maternal and child health, hiv/aids, trauma and violence and non-communicable diseases (kietrys et al., 2019; maredza & chola 2016; mayosi et al. 2009). in lowand middle-income countries (lmics) such as south africa, disability and poverty are also often intertwined (mitra, posarac & vick 2013), with persons with disabilities being most likely to be poor because of exclusion from educational, employment and economic opportunities (pinilla-roncancio 2015). persons with disabilities experience significant health challenges and healthcare needs (krahn, walker & coorea-de-araujo 2015). persons with disabilities tend to experience secondary complications because of their primary disability (maart, amosun & jelsma 2019). persons with disabilities also require rehabilitation to realise their full health and functioning (sherry 2014). rehabilitation has been defined as a grouping of interventions that aim to reduce disability and improve the functionality of individuals (philpott, mclaren & rule 2020). as such, rehabilitation care should form a significant part of primary healthcare (sherry 2014). however, access to healthcare, including rehabilitation, is limited for persons with disabilities (bright, wallace & kuper 2018). persons with disabilities struggle to access healthcare services because of many barriers. some of the barriers include transportation challenges and finances related to transportation costs, geographical location of healthcare facilities, physical access at the healthcare facilities, long queues and waiting times, poor access to communication and health information, attitudes of healthcare professionals, availability of medicine and equipment and inadequate referral systems (braathen et al. 2016; moodley & ross 2015; sherry 2014; van rooy et al. 2012; visagie & schneider 2014). service barriers specific to rehabilitation services include the shortage of rehabilitation staff workers (maart & jelsma 2013), which usually encompasses physiotherapists, occupational therapists, speech-language therapists and audiologists (visagie et al. 2017). other challenges include an inadequate budget allocation for services and assistive devices, length of hospital stay, poor intersectoral collaboration and language barriers (maart & jelsma 2013; ntamo, buso & longo-mbenza 2013). these barriers are worse in rural south african contexts (vergunst et al. 2017). subsequently, not meeting the health and rehabilitation needs of persons with disabilities may lead to poorer health, decreased quality of life, increased re-hospitalisation, and ultimately perpetuate their discrimination and exclusion from participation in society (the south african human rights commission 2019). access to healthcare is a human right for all, as articulated in articles 25 and 26 of the convention on the rights of persons with disabilities (crpds) (united nations 2006). south africa ratified the crpd in 2007 (hussey, maclachlan & mji 2017). after the ratification of the crpd, south africa developed the white paper on the rights of persons with disabilities in 2015 (kamga 2016) and the framework and strategy for disability and rehabilitation services in south africa, 2015–2020 (fsdr). the development of the fsdr commenced in 2013, and its implementation was intended for 2015–2020 because of the covid-19 pandemic, it was extended to 2022 (sherry 2014). implementation was aimed at national and provincial rehabilitation managers, rehabilitation professionals as well as community health workers. however, there is poor awareness of the fsdr amongst the stakeholders, which has resulted in little known information on the implementation process and outcomes. the fsdr is based on primary healthcare re-engineering and pillared on the principles of community-based rehabilitation (cbr), which is arguably the golden standard for rehabilitation in both developed and developing countries because of its emphasis on inclusion (grandisson, hebert & thibeault 2014). despite the existence of these progressive disability rights policies and their good intentions, disability scholars in south africa continue to lament the barriers that persons with disabilities experience when they access healthcare and rehabilitation services (moodely & ross 2015; sherry 2014), with the magnitude and consequences of these barriers differing with each specific context (world health organization 2011). problem statement despite the increasing prevalence of disability in south africa and globally, disability rights are not upheld. a tool to address this is public health policy. the year 2020 marked 5 years since the inception of the fsdr. prior to this study, the fsdr had never been reviewed. this study aimed to describe the fsdr processes (actors, content and context) and the barriers and facilitators that influenced the policy processes (development, implementation and monitoring) of the fsdr of south africa. conceptual framework the authors utilised the walt and gilson (1994) triangle framework for policy analysis, which provides a holistic and systematic approach to policy analysis from the perspective of the content, context, actors and policy processes (blaauw, ditlopo & rispel 2014; walt & gilson 1994). this study focused on the process aspect, namely development, implementation and monitoring and evaluation and how these processes were influenced by barriers and facilitators. process pertains to the descriptions of how policy reforms were identified, formulated, implemented and monitored as well as the various stages involved (buse, mays & walt 2005). the advantage of using this framework is that it was intended for policy analysis in developing countries (walt et al. 2008). the walt and gilson analytical framework was developed specifically for healthcare and has been widely used on a substantial number of health issues (gilson & raphaely 2008). most importantly, the analytical framework is based on a political economy perspective considering how content, context, actors and processes interconnect to influence policymaking (walt et al. 2008). even though there are several policy reforms on disability and access to healthcare, the fsdr focuses specifically on rehabilitation and the interface between rehabilitation, cbr and primary healthcare re-engineering. policy reforms are generally political in nature (buse et al. 2005). as such, policy analysis using a structured framework such as the walt and gilson framework is required. research methods and design research design to achieve the aim of this qualitative research, a single case study research design was employed to ascertain the actors, content, context and processes of the fsdr. a single case study design is a valuable tool to explore complex issues and relationships within a real-life context such as the processes’ barriers and facilitators (tetnowski 2015; yin 1999). study population the study involved 12 key informants (table 1) who were selected through purposive and snowball sampling for the study. purposive sampling was deemed appropriate because it allowed the authors to identify and select participants whose experiences can answer the research question (tongco 2007) and provide detailed and rich information related and pertinent to the phenomenon of interest (palinkas et al. 2015). purposively selected participants followed the study inclusion criteria that referred to individuals who were involved in the development, implementation and monitoring process of the fsdr namely, rehabilitation services managers and therapeutic sciences professionals as well as academia, professional organisations for therapeutic sciences and disability persons organisations. from these primary participants, secondary participants were identified through snowball sampling which includes a member of professional organisations for rehabilitation, a member of the district rehabilitation division and two individuals from disability persons organisations, all of whom were involved in development and implementation of the fsdr. table 1: demographic information of key informants. the 12 key informants represented four stakeholder groups who are based in the johannesburg metropolitan district: gauteng department of health (n = 7), professional associations (n = 3), academics (n = 1) and non-governmental organisations (n = 1). the demographic data of the participants are represented in table 1. the key informants were professionals registered with the health professionals council of south africa (hpcsa) who work in academia (one participant), in the non-government organisation sector (one participant) and in both the public (seven participants) and private sectors (three participants). the participants were in these positions since the inception of the fsdr. a total of 10 females and two males participated in the study. all participants had work experience in the field of rehabilitation and disability, either clinical experience, academic research or in management positions associated with these fields. the participants’ involvement in the fsdr ranged from development to implementation to monitoring, with some individuals involved in all three processes. participant one was an academic with over 30 years of rehabilitation experience and was involved in only development, despite their involvement in a disability person’s organisation. participant two, was from the public sector, in an influential managerial position associated with rehabilitation and was involved in all three processes. participants three to six, were rehabilitation professionals on the ground, who were involved in development and implementation. participants seven and eight, held management positions within the public sector in rehabilitation in the district. the remaining participants were clinical rehabilitation professionals at ground level who were excluded from development but involved in the implementation process. data collection the fsdr is the only policy that speaks to disability and rehabilitation in south africa. the fsdr was searched and retrieved online. a document review of the fsdr was conducted using review guide (appendix 1) that was developed by the researchers informed by the walt and gilson (1994) health policy analysis triangle framework. the purpose of this review is to identify the key role players involved in the processes, as well as the content, context and processes of the fsdr. semi-structured interviews were conducted using an interview guide (appendix 2) developed by the authors. the interview covered topics that would answer the research question, namely actors, context, content and the processes of the fsdr and access to healthcare. prior to the main study, a pilot study was conducted to establish the relevance and appropriateness of the interview guide questions and familiarise the researcher with the research process (van teijlngen & hundley 2002). all 12 interviews were audio-recorded using a mobile phone recorder and the recordings were stored in a secured folder. interviews were conducted until data saturation was reached when repetition occurred in the interviews and no new themes or points of interest arose (guest, bunce & johnson 2006). data analysis the researchers read the document line by line independently and systematically coded the document using maxqda version 2018.2 (berlin, germany): a software programme for qualitative data analysis. coding independently was to ensure inter-rater reliability and agreement of the data (campbell et al. 2013). thereafter the researchers discussed and compared the coded text segments with the three coders. all the coded segments in the fsdr document were categorised into content, actors and context. discussion among the researchers on the coding process and categories were performed on a regular basis. the interviews were transcribed verbatim and rechecked to ensure correct transcription (braun & clarke 2006). the first author engaged with the transcripts for familiarity by reading and reading them and correcting grammar or typing errors. memos were added to the transcripts as they were read. the maxqda version 2018.2 was used for data analysis. inductive thematic analysis was used as it is deemed an accessible and flexible approach to the analysis of qualitative data (braun & clarke 2006). the (author(s) in press) searched for broader memos in the transcripts. from this, the memos were sorted into different codes. the codes were categorised into sub-themes and then sorted into the main themes (erlingsson & brysiewicz 2017; hsieh & shannon 2005). recoding was redone by the principal researcher. regular meetings were held by the researcher to discuss the research procedure, preliminary findings and the final study findings. trustworthiness to ensure trustworthiness and rigour, this study utilised member checking by confirming participants’ responses immediately after each interview to ensure the responses documented and recorded by the researcher correlated with what the participant intended to say (shenton 2004). transferability was achieved utilising detailed descriptions of the study methodology (shenton 2004). dependability was achieved through in-depth descriptions of the data collection methods. confirmability was achieved through the reflective commentary from the reflective journal with observations on verbal cues and body language, as well as in-depth descriptions of the methodologies used. ethical considerations ethical clearance was granted by the medical human ethics research committee of the university of the witwatersrand (m190438). the research protocol was registered on the national health research database. permission was granted by the gauteng department of health research committee (gp_201905_45). study participants were approached for participation, the aim of the study was explained to the participants in an information sheet and written informed consent was obtained. a separate consent for the interviews and a separate form for the audio recordings were completed. each participant remained anonymous using identifier codes and the concealment of participant’s specific workplaces to maintain confidentiality. results the findings of this article will describe the actors, content, context and processes of the fsdr and the barriers and facilitators that influenced the process of development, implementation and monitoring. framework and strategy for disability and rehabilitation services content the content of the fsdr covered the aims, distributional impact and foundational philosophy. the document review revealed that the aim of the fsdr was mainly to define and guide rehabilitation service provision: ‘… to achieve equal access to healthcare services as well as to provide specified rehabilitation services where and when required’ (fsdr document, p. 7) ‘the provision of integrated, comprehensive, appropriate disability and rehabilitation services through effective and equitable resource allocation and inter-sectoral collaboration.’ (fsdr document, p. 11) the key informants focused more on the allocation of resources and intersectoral collaboration: ‘i feel the fsdr does pull that back together and say firmly we are looking at cbr approach, we are looking at a multidisciplinary rehabilitation team …’ (participant 4, female, central hospital staff) ‘i think what it does is that it talks to interprofessional and intersectoral collaboration.’ (participant 2, female, academia) ‘… so… fsdr also seeks to say how can we structured the human resource aspect.’ (participant 12, female, specialised hospital) the fsdr distributional impact was supposed to be realised in all levels of care: ‘this policy framework and strategy for disability and rehabilitation services in south africa outlines comprehensive and integrated disability and rehabilitation services within the broader health and developmental context to facilitate improved access at all levels of healthcare.’ (fsdr document, p. 8) however, there was mixed feelings from the interviewees. some participants perceived the fsdr to be effective in terms of improved organisation of rehabilitation systems: ‘i think in some ways it did help us to actually organise our thoughts and give us some motivation or drive to start doing strategic planning you know more formalised and less haphazardly.’ (participant 8, female, national department of health) the fsdr also increased awareness of the process of rehabilitation: ‘i think that’s guided us quite a bit as well in terms of understanding the different levels of care provide for the patients and enable them to direct them appropriately and also looking at the referral system between the levels of care and the referrals to the rehab units.’ (participant 10, female, jhb metropolitan district staff) on the contrary, some participants were sceptical about the value of fsdr, being framework and not a policy: ‘… it [fsdr] is only a framework and so on, it’s not a full policy that has been accepted and so on. so, in that sense it has less of a value than what a full policy, implemented policy document would be.’ (participant 7, female, gauteng department of health rehabilitation) some respondents felt that the fsdr lacked substance was not effective and that it had contradictions as explained by the following respondents: ‘… it’s a very scant document. there’s not enough to develop an action plan.’ (participant 12, female, specialised hospital) ‘there are contradictory things for me in the fsdr, which are contradictory to how people could practice …’ (participant 2, female, academia) the guiding philosophy behind the fsdr was cbr as outlined in the document and by the respondents: ‘this strategy focuses on the mandate of the health sector but fully subscribes to the cbr philosophy.’ (fsdr document, p. 13) ‘i feel the fsdr does pull that back together and say firmly we are looking at cbr approach, we are looking at a multidisciplinary rehab team …’ (participant 4, female, central hospital) context the context that influenced the development of the fsdr was categorised into structural, cultural, situational and global contexts. structural context the need for a new rehabilitation policy that can address the gaps that are presented by the medical model was one of the reasons for developing the fsdr: ‘a medical model resulted in poor access to a comprehensive disability and rehabilitation service especially to persons in rural and disadvantaged areas.’ (fsdr document, p. 10) ‘the gap is that there is nothing in terms of, let’s say, a rehab policy in south africa.’ (participant 12, female, specialised hospital) situational context health system inefficiencies such as the lack of access to healthcare, non-integrated services, inadequate resources provision and a lack of rehabilitation indicators necessitated the need for the policy reform: ‘the implementation of disability and rehabilitation services as a vertical programme with little or no scope for integration with priority health programmes, such as non-communicable diseases, maternal child and women’s health (mcwh), hiv and aids.’ (fsdr document, p. 10) ‘inaccessibility of health services with regard to facility infra-structure, signage and information in an appropriate medium including sign language and braille.’ (fsdr document, p. 10) ‘it’s like we are uhm these step-sister people, which you call on when you don’t know what to do with anybody.’ (participant 2, female, academia) ‘what is very clear is that rehab is an afterthought. it’s not an integral part of the health system.’ (participant 12, female, specialised hospital) ‘so, a process was set in motion then you know to look at that and then to try as much as possible to have then an inclusive approach to disability and rehab services.’ (participant 9, male, jhb metropolitan district) global context there was international pressure to develop a disability policy to support the united nations convention on the rights of persons with disabilities (uncrpd) as explained in the fsdr: ‘the un convention on the rights of persons with disability (crpd) was signed and ratified by the south african government in 2007 and its provisions reflect the obligations of the state. (fsdr document, p. 10) and the interviews i think it had to do with the fact that our government has signed a number of agreements. and rehab internationally is something that is on the agenda, which has to be looked at.’ (participant 12, female, specialised hospital) actors the fsdr report stated the importance of involving different stakeholders, which was confirmed in the interviews. there was a range of stakeholders (actors) in the fsdr development, implementation and m&e. the actors included the national department of health (rehabilitation manager, clinicians, provincial rehabilitation coordinators and community health workers), consultants, private health groups, traditional healers and ngos, public sector representatives and professional associations and academia: ‘this framework and strategy for disability and rehabilitation services in south africa 2015 was compiled in consultation with people with disabilities, the task team on disability, professional rehabilitation service providers, academics and other key stakeholders in the field.’ (fsdr document, p. 3) from the interviews the participants indicated that different stakeholders played different roles throughout the policy process. the rehabilitation manager had a critical role throughout the policy process, to facilitate the development, implementation and oversee the monitoring processes: ‘i became the secretariat for the task team. i was responsible for organising meetings and recording meetings half the meetings i also facilitate. so, i would play both roles of facilitating and secretariat. i had the responsibility to facilitate implementation and essentially the only one involved in m and e.’ (participant 9, male, jhb metropolitan district) although the clinicians were not involved in the development of the fsdr, they played a critical role in implementing it, as seen in the following quote: ‘we looked at how we could use that (fsdr) in our context, and implement what was recommended in our context …’ (participant 10, female, jhb metropolitan district) other stakeholders such as the ngos, public sector representatives and professional associations and academia played a role in the development of the fsdr and no role in the implementation and m&e process: ‘my role was simply to make sure that the rural anomalies and needs and primary healthcare needs and strategies were firmly articulated within the fsdr …’ (participant 4, female, central hospital) ‘… [a]s part of the task team sort of we had to look at what’s involved in the discussions around developing the document…providing information to the associations after a meeting, get the feedback of what was required and the task that we had to do.’ (participant 7, female, gauteng department of health rehabilitation management) policy process: development, implementation and monitoring and evaluation the processes of development, implementation and monitoring of the fsdr were faced by both barriers and facilitators as reported by key informants. development of the framework and strategy for disability and rehabilitation services a task team in consultation with various stakeholders developed the fsdr. the development of the fsdr was made difficult by poor management in terms of a lack of remuneration for the services rendered: ‘i basically had to work for free for those 3 months – they paid me in the end for i think 23 days – but it took me 3 full months day and night.’ (participant 5, female, rehabilitation non government organisation) there was insufficient documentation of the development process as expressed by the following quote: ‘there were no minutes taken…nothing was verbally documented nor was it audio recorded.’ (participant 4, female, central hospital) this lack of documentation was exacerbated by a rushed development process as seen in the response below: ‘they [ndoh] said it (fsdr) had to be developed in a maximum of i think-15 days.’ (participant 5, female, rehabilitation nongovernment organisation) although the development process of the fsdr encountered barriers, there was good teamwork, which facilitated the process. the team was diverse and had a broad range of experience with a positive attitude towards the process: ‘so, we had a broad range of representation.’ (participant 12, female, specialised hospital) ‘the department of health then opened it up to all the other organisations, which were then involved in development.’ (participant 9, male, jhb metropolitan district) ‘… [s]ome people had more idea, like had been involved at policy level before…had policy training.’ (participant 4, female, central hospital) implementation of the framework and strategy for disability and rehabilitation services the national department of health was responsible for implementing the fsdr together with other stakeholders. ‘we will endeavour to implement this framework and strategy to ensure that services for persons with disabilities are available at all the levels of healthcare.’ (fsdr document, p. 7) ‘establish an inter-sectoral disability and rehabilitation for health steering committee to be housed within the national health commission.’ (fsdr document, p. 18) the implementation process of the fsdr proved to be a challenge because of poor leadership to ensure that there is a common vision around fsdr and that it is adequately understood and implemented: ‘i think the lack of urgency, perhaps, you know, or leadership, governance, you know, of, you know, how serious do you really take the document.’ (participant 7, female, gauteng department of health) ‘… [e]verybody interprets that content in the way that they think it should and so there is not necessarily a collective vision about that, nor does it necessarily reflect the needs of the people.’ (participant 12, female, specialised hospital) the fsdr was not operationalised properly in terms of allocation of resources such as a dedicated budget and human resources to facilitate the implementation process: ‘i mean it [fsdr] doesn’t operationalise anything either because there aren’t resources allocated to implement it.’ (participant 2, female, academia) ‘what was also lacking … there wasn’t an alignment to budgeting processes also. so, no commitment that, if let’s say, early intervention is a priority, what does that actually mean in terms of implementation and what does that mean in terms of provinces dedicating a budget to making it happen.’ (participant 12, female, specialised hospital) the lack of training resulted in some actors being unsure of the implementation process, leading to implementation differences across provinces: ‘we didn’t have any training specifically on the policy except the booklet to refer back to.’ (participant 11, female, professional association) ‘the implementation varied from province to province.’ (participant 8, female, national department of health) even though the implementation process was met with barriers, there were some facilitators to the implementation process. the national health department offered some support through mentorship training and strategic planning: ‘national department (ndoh) made itself available to take provincial actors through training, which some provinces took up and others felt they are okay.’ (participant 9, male, jhb metropolitan district) ‘a facilitator to help with implementation was that i think mentorship from occupational therapists in higher management posts.’ (participant 10, female, jhb metropolitan district) ‘… [a]t that stage, we were very lucky to have a company and i can’t remember its name that was doing work for gauteng health in terms of strategic planning, and they took that document and with senior representatives from gauteng health, we actually then developed a strategic plan, emanating from that.’ (participant 8, female, national department of health) framework and strategy for disability and rehabilitation services monitoring and evaluation not much was mentioned in the fsdr on monitoring and evaluation except for goal six of the strategic plan 2015–2022: ‘goal 6: improve monitoring and evaluation of disability and rehabilitation services develop and implement a monitoring and evaluation framework.’ (fsdr document, p. 18) the main informant mentioned significant gaps in the monitoring and evaluation of the fsdr. there is currently no framework developed for monitoring and evaluating the implementation process of the fsdr. the participants highlighted the lack of data collection system with set indicators, baseline data and regular continually collect for monitoring the implementation: ‘i think because there’s no clear reporting structures, so we had no baseline as to what existed before the framework, there’s nothing to compare if this framework actually made any difference in terms of implementation. indicators were not developed.’ (participant 12, female, specialised hospital) ‘… [i]f you don’t know what is happening in the area, what is the burden of disease, then how can you plan any service really. so, the monitoring and the evaluation definitely needs to be addressed and so on, so that one can plan, you know, base your planning on proper evaluation and monitoring.’ (participant 7, female, gauteng department of health) ‘i’m not familiar with a specific strategy that was followed and so on to say, you know, you have to do it, you don’t have to do it, and by when, and so on.’ (participant 7, female, gauteng department of health) a facilitator to the monitoring and evaluation process is a case study that was commissioned by the ndoh to be carried out in the kwazulu-natal province to evaluate the readiness to implement the fsdr: ‘the only positive … i only know that the [non-government organisation] was then commissioned and it probably was at the beginning of 2017 to do research on readiness for rehabilitation, to look at, i believe [they] wanted to know how ready south africa is to implement this framework and strategy. and so, they took it on, and out of the nine provinces, they chose kwazulu-natal as the province to work in.’ (participant 5, female, rehabilitation non government organisation) discussion a wide range of actors, representative of various sectors, expertise and experiences who were appointed through the minister of health were involved in the development phase of the fsdr, albeit under financial resource and time constrained conditions. actor dynamics is key to any successful policy process (shiffman & smith 2007). actor dynamics represents power (buse et al. 2005) linked to individuals, organisational or political standing and representation (buse et al. 2005; shiffman & smith 2007; shumba & moodley 2018). actor dynamics is an essential part of the decisions made during policy development and influences what ends up in the agenda of any health policy document (buse et al. 2005; hudson, hunter & peckham 2019; koduah, van dijk & agyyepong 2015; shiffman & smith 2007). in the case of the fsdr, the key representatives of the core professional rehabilitation services providers were included, and this was evident in the fsdr, which not only considered the principles of the crpd but also mirrored the principles of the cbr (sherry 2014). the inclusion of organisations for people with disabilities (dpos) as actors in the development of the fsdr should be acknowledged as it follows the historical pattern of inclusion of dpos in drawing up the constitution of south africa, as well as contributing to previous disability policy development in south africa (lang & murangria 2009). this representation of actors, which was a strength of the policy development phase, was unfortunately not maintained in subsequent stages, specifically in implementation and monitoring. mugwagwa, edwards and de haan (2015:2) view policy implementation as a social action transformed from the policy, which is typically aimed at social betterment and most frequently manifests as programmes, procedures, regulations or practices. in essence, mugwagwa et al. (2015) and the authors of this article argue that policy development and implementation require the involvement of different stakeholders, and it should not be left as a sole responsibility of the state government if it is to achieve social betterment of people at the grassroots in this case persons with disabilities, where the slogan ‘nothing for us without us’ should ring true. insufficient human, financial and physical resources and an unrealistic time frame allocated to the process were consistent across all policy stages and therefore significantly impeded the successful implementation of the fsdr. these were compounded by the insufficient training, skills and insufficient resource allocation for implementing the fsdr. the insufficient state government commitment to human and financial resources necessary for policy development and implementation is reconcilable with those of other developing countries and has been at the centre of debates on policy implementation gaps (koduah et al. 2015; masuku 2020; mugwagwa et al. 2015; shumba & moodley 2018). the insufficient preparedness of staff in policy implementation skills that evoked negative attitudes and feelings towards the process is a common occurrence in disability policy studies (masuku 2020; mugwagwa et al. 2015; shumba & moodley 2018). grindle (2017) argues that insufficient available resources contribute greatly to the variable and inconsistent nature of the policy implementation process. this insufficiency related to resource allocation, therefore, highlights the critical role and need for state governments to reflect on their commitment to the success of policy implementation through investing resources and skills training. the development of policies shouldn’t be seen only as an undertaking aimed at serving political agendas. however, there should be a realisation of the impact that insufficient implementation has on access to and satisfaction with healthcare services and rehabilitation for persons with disabilities and other vulnerable groups who depend on state facilities for their healthcare and rehabilitation needs. while the authors view that policy implementation should not be the sole responsibility of government states, the government should provide the necessary human, financial and physical resources necessary for successful policy implementation and monitoring. the monitoring phase of any public policy aims to assess whether or not a policy or programme has achieved the objectives it set out to achieve. the fsdr’s monitoring stage was unsuccessful because of insufficient data collection systems. it has been reported that there are case studies underway to evaluate the success or failure of the policy; however, this is being performed in one province. lamhauge, lanzi and agrawala (2012) corroborate that the insufficiency of a monitoring and evaluation framework hinders the ability of the policy actors to assess the effectiveness of the fsdr and a possible future improvement. the hák, janoušková and moldan (2016) has stressed that for states to keep actively working towards achieving the sustainable developmental goals, they need to respond to and prioritise policy decisions that guide public health interventions. if policy decisions are not prioritised, be it at the development, implementation or monitoring stages, the repercussions are felt by the people at the grassroots, particularly persons with disabilities. these are evident in the barriers experienced by persons with disabilities when they access healthcare services, such as insufficient access to assistive services because of inefficient procurement systems, staff shortage, transportation challenges and poor socio-economic conditions of patients, which have been extensively documented in the local and international literature (masuku 2020; moodely & ross 2015; sherry 2014; vergunst et al. 2017), more effort needs to be put into strengthening the implementation of policy and this can be addressed by raising awareness about the policy to the health providers and ensuring adequate resources to facilitate the implementation of the policy. study limitations this study’s findings are specific to the johannesburg metropolitan district on the experience of the processes of the fsdr and the barriers associated with it. the study’s findings cannot be generalised to other districts and provinces. furthermore, the lack of end user involvement such as persons with disabilities as part of interview participants may limit the depth of the study’s findings on the barriers and facilitators to the processes of the fsdr. conclusion the fsdr has not successfully achieved the intended outcomes despite its best intentions. while the fsdr has adequately considered the principles of the crpd and mirrors the philosophy of the cbr on which it is based, the apparent gaps in policy implementation and monitoring have significantly hindered its progress. this reaffirms the fact that south africa has very good policies, which often lack in implementation. therefore, this highlights the need for the country to shift its focus from developing more policies but rather investing on research that will focus on guidelines on policy implementation and strategies for policy monitoring and evaluation. policy implementation requires multisectoral commitment, resources and key people leading the proposed reform. very imperative to this process is the buy in from stakeholders and the general public that lipsky (2010) terms ‘street-level bureaucrats’. a context that is appropriate and receptive to a policy reform along with positive organisational culture can contribute positively towards implementation. with specific reference to the fsdr, rehabilitation healthcare workers as well as community health workers are key to the process of implementation and should not be left behind if implementation is to be successful. the state needs to also commit resources to the process of policy implementation. while we acknowledge the role and need for multisectoral involvement, the state’s commitment is key. the national department of health and gauteng provincial department of health need to rethink and recommit to making disability a part of their agenda and health programmes. if disability is prioritised, then policies related to disability and health will be prioritised. acknowledgements the authors would like to thank all the participants who were willing to share their views on the subject. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions n.h.e.k. carried out the research in this study under the guidance of s.i.p. and k.d.m. who gave input and guided the data analysis. k.m., s.i.p. and n.h.e.k. wrote the manuscript. funding information this work was supported by the south african society of physiotherapy and the national research foundation. the views 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recommendations conclusions acknowledgements references about the author(s) elsje scheffler division of family medicine and primary care, faculty of medicine and health sciences, stellenbosch university, cape town, south africa centre for disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa robert mash division of family medicine and primary care, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation scheffler, e. & mash, r., 2023, ‘evaluation of a stroke rehabilitation training programme for community-based primary healthcare’, african journal of disability 12(0), a1137. https://doi.org/10.4102/ajod.v12i0.1137 original research evaluation of a stroke rehabilitation training programme for community-based primary healthcare elsje scheffler, robert mash received: 13 sept. 2022; accepted: 06 july 2023; published: 08 sept. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: family caregiver training is an integral part of stroke rehabilitation programmes and is associated with improved caregiver and stroke survivor outcomes. in the cape winelands district, a low-resourced rural community-based setting in south africa, stroke survivors and family caregivers mostly rely on assistance from community health workers (chws), despite their lack of stroke-specific rehabilitation training. objectives: to evaluate the implementation and immediate effects of a bespoke, 16 session, 21 h stroke rehabilitation training programme for chws to better support family caregivers. methods: two cooperative inquiry groups participated in participatory action research to design and develop the programme. this article reports on the implementation of this programme. inquiry group members directly observed the training, obtained written and verbal feedback, interviewed chws and observed them in the community. consensus on their learning was achieved after reflection on their experience and observations. results: learning of the cooperative inquiry groups was categorised into the effect on community-based care, the training programme’s design and development, how training was delivered and implications for service delivery. community health workers empowered caregivers and stroke survivors and enabled access to care, continuity, coordination and person-centredness. the need for experiential learning and a spiral curriculum was confirmed. therapists needed a different set of skills to deliver training. a systems approach and effective leadership were needed to enable community health workers to use their new skills. conclusion: the stroke rehabilitation training programme demonstrated potential for integration into service delivery and equipping chws to support family caregivers and stroke survivors. further evaluation of the programme’s effectiveness and scale-up is needed. contribution: evidence of an intervention to train chws to support stroke survivors and family caregivers. keywords: primary healthcare; community care; stroke rehabilitation; community health workers; low resourced; lowand middle-income countries. introduction many stroke survivors require ongoing assistance from family members for participation and integration into daily activities, as well as general and rehabilitation health management. family caregiver training is therefore an essential element of global stroke rehabilitation programmes (kamalakannan et al. 2016; langhorne et al. 2018; pandian et al. 2016; yan et al. 2016a) and stroke guidelines across all levels of stroke care (bryer et al. 2011; cameron et al. 2016; lindsay et al. 2014; winstein et al. 2016). caregiver training is associated with improved stroke survivor and caregiver knowledge and skills (araújo et al. 2018; bakas et al. 2014; camak 2015; pitthayapong et al. 2017; white, cantu & trevino 2015), reduced care burden (araújo et al. 2018; bakas et al. 2014; camak 2015), reduced caregiver anxiety and depression and improved mental health (araújo et al. 2018). for stroke survivors, caregiver training is associated with reduced depression and anxiety, increased patient satisfaction and a decrease in secondary complications and hospital readmissions and may also improve stroke survivor function and quality of life (bakas et al. 2014; pitthayapong et al. 2017). globally, most caregiver interventions are delivered by rehabilitation professionals as part of stroke unit care and multidisciplinary rehabilitation (bakas et al. 2014; camak 2015; dobe, gustafsson & walder 2022; hafsteinsdóttir et al. 2011; khondowe, rhoda & mpofu 2007; nordin et al. 2014; pesantes et al. 2017; the attend collaborative group 2017). where rehabilitation services and numbers of rehabilitation professionals are low, simpler caregiver training programmes led by general nurses have been advocated for (zhou et al. 2019) and successfully implemented (deyhoul et al. 2019; pitthayapong et al. 2017). with community nursing staff often already overburdened, task-shifting of caregiver training to grassrootsor mid-level workers has been advocated as it falls within their scope and role (bryer 2009; bryer et al. 2011; hassan et al. 2012; miranda et al. 2017; the attend collaborative group 2017; wasserman, de villiers & bryer 2009). however, no evidence of stroke rehabilitation task-shifting to these cadres and/or implementation and evaluation of stroke training programmes were found in low-resourced settings. with the global burden of disease from stroke shifting towards lowand middle-income countries (donkor 2018; langhorne et al. 2018), these cadres could become a pivotal resource to support stroke survivors and their caregiver in these settings. however, there is limited evidence on community health worker (chw) rehabilitation-related training and insufficient information on training methods and outcomes (abdel-all et al. 2017; nesbit, gombwa & ngalande 2015). south africa has recorded high and increased rates of stroke mortality and morbidity, particularly in rural communities (maredza, bertram & tollman 2015; taylor & ntusi 2019; the saspi project team 2004). however, rehabilitation services are often inaccessible to stroke survivors because of poverty and other contextual barriers, such as inaccessible or unavailable transport and infrequent service delivery, and stroke survivors are largely dependent on family caregivers only (cawood & visagie 2016; eide et al. 2015; maart & jelsma 2014; visagie & swartz 2016). public healthcare policy in south africa emphasises a primary healthcare (phc) approach (national department of health 2020; ed. van rensburg 2012). acute services are delivered at central, regional and district hospitals. nurse-driven primary care services are delivered at facilities where rehabilitation is provided by a small roving team of multidisciplinary professionals (mdps) (naledi, barron & schneider 2011). a community-oriented primary care (copc) approach integrates facilityand community-based services (cbss) in defined communities with multidisciplinary and intersectoral cooperation (mash et al. 2019). in the homeand community-based care (hcbc) platform, copc is delivered by teams of chws led by care coordinators, who are professional and/or enrolled nurses (naledi et al. 2011). community health worker s are selected from and work as part of ward-based phc outreach teams in the communities they live. their scope includes health promotion and disease prevention, referral to health services, adherence support and counselling for those with chronic conditions, minor curative services, home-based care, which includes facilitation of daily living activities and restoring function, as well as providing psychosocial support. historically, pre-1994 under the apartheid era, numerous innovative ad hoc chw programmes were delivered by non-government organisations, often with a limited focus, for example, on home-based care, pregnant mothers, nutrition and in some cases disability. ironically, once phc was established as policy by the new government post-1994, many of the chw programmes closed for lack of funding (van ginneken, lewin & berridge 2010). the government only promoted chws again in 2010 as part of phc reengineering and standardised national accredited training only started in 2016, but with limited rehabilitation-related content (south african qualifications authority 2018a, 2018b, 2018d). in the cape winelands, with insufficient rehabilitation resources and multiple barriers limiting access to services, most stroke survivors and their caregivers were dependent on chws who had no stroke training. in this context, the researcher was approached by a district cbs manager to assist in the development of an appropriate home-based stroke rehabilitation training programme to equip these chws to train family caregivers. this community-based programme was developed locally through participatory action research and intersectoral collaboration of service providers, in consultation with stroke survivors and their caregivers, as previously published (scheffler & mash 2023). the aim of this study was to evaluate the implementation and immediate effects of the training programme as part of the same participatory action research process. research methods and design study design this was the last stage of a multistage mixed-method study (table 1). the first two convergent stages, a quantitative longitudinal survey (scheffler & mash 2019) and a qualitative descriptive exploratory study (scheffler & mash 2020), were part of the situational analysis informing the planning phase of a professional participatory action research (par) study. professional par is defined in the crasp model as (hart & bond 1995; zuber-skerrit 1992): critical collaborative inquiry by reflective practitioners being accountable and making the results of their inquiry public self-evaluating their practice and engaged in participative problem solving and continuing professional development. table 1: overview of the multistage study, procedures and results integrated with the steps of the analyse, design, develop, implement, evaluate model. this professional par study used a cooperative inquiry group (cig) method (heron 2014; higginbottom & liamputtong 2018; ramsden et al. 2019). this cig method has previously been used for both stroke programme and training development (aslani et al. 2016; dobe et al. 2022; krieger et al. 2021). it has also been used in phc research and programme implementation, as it provides both autonomy to participants and facilitates engagement between community members and respective service providers to address community health problems (ramsden et al. 2019). the cyclical steps of planning, action, observation and reflection were aligned with the analyse, design, develop, implement, evaluate (addie) instructional design model (allen 2006; mayfield 2011) for development of a training programme (table 1). this article focuses on the action, observation and reflection steps of the inquiry, which corresponds with the implementation and evaluation steps of the addie model (figure 1). stages 1 and 2 as well as the planning phase of stage 3, detailing the analysis, design and development steps of addie, were previously published (scheffler & mash 2019, 2020, 2023). figure 1: diagrammatic representation of the methods. setting the cape winelands district in the western cape province of south africa (figure 2) is a rural agricultural area with small towns, where the majority of the 866 000 population live in poverty and are dependent on state services (statistics south africa 2018). the predominant language is afrikaans, followed by english and isixhosa. in this low-resourced district with significant health inequities, limited healthcare capacity and funding, limited transport infrastructure and personal and environmental barriers in accessing healthcare services, hcbc is the only resource for many stroke survivors and their caregivers. however, these chws have not received any stroke-specific training. figure 2: map of south africa illustrating the western cape province (light grey area), with the cape winelands district (darker grey area). the insert shows the breede valley subdistrict (black). stroke clinical practice pathways and referral guidelines were absent and stroke care was poorly coordinated (scheffler & mash 2019). stroke survivors were discharged home from acute care to untrained family caregivers after 5 days (scheffler & mash 2019). function and care were limited by numerous environmental barriers such as unavailable or inaccessible services, physical barriers in the home and lack of assistive products (scheffler & mash 2019, 2020). overall, literacy and numeracy of both stroke survivors and caregivers were poor, with more than half having no or only primary school education (scheffler & mash 2019, 2020). knowledge of stroke and recovery, rehabilitation, health services and assistive products was poor. the study was conducted in the breede valley subdistrict (figure 2) where the cbs management offices are based. free rehabilitation-related services, delivered by four independent organisations, were available (table 2). the district health services employed mdps who previously offered ad hoc training to the chws. boland hospice, a local non-profit organisation, employed 79 chws supervised by 4 nurse coordinators. the breede valley association for the physical disabled (apd) offered help with employment and education. stellenbosch university also placed health science students in the district. table 2: numbers of the multidisciplinary professionals and community health workers in the breede valley subdistrict. selection of cooperative inquiry group members in consultation with the service managers of the five organisations, 27 key role players involved in stroke-related service delivery at phc level were invited and all but one agreed to participate (scheffler & mash 2023). this process is described in detail in a separate article outlining the planning of the inquiry process (scheffler & mash 2023). because of practical considerations, two cigs were formed. the cbs-cig consisted of 18 service providers with both clinical and educational expertise and included 5 chws, while the mdp-cig consisted of 8 mdps (table 3). table 3: profile of the two cooperative inquiry groups. the inquiry process planning the first 11 months of planning in 2014–2015 by the two cigs was described in a separate article (scheffler & mash 2023). this included an extensive analysis, which informed the consultative coordinated interprofessional design (harris et al. 2016) of the training programme (scheffler & mash 2019, 2020). this article reports only on the action, observation and reflection steps over 4 months in 2015. action the interprofessionally designed training programme (scheffler & mash 2023) was delivered to three groups of 24 chws, in seven 3-h periods over 10 weeks, according to the training manuals. the trainer’s manual outlined the learning outcomes, content, resources, preparation needed and teaching methods for each session (table 4). following adult education principles (hanger & wilkinson 2001; kaufman 2003; knowles 1970), delivery was interactive, experiential and collaborative, with role-plays and case studies. the curriculum design included principles of a spiral curriculum (harden & stamper 1999) where key concepts were revisited to reinforce prior learning and add new depth. skills learning combined essential theory, modelling and simulated practice with skillful feedback (hanger & wilkinson 2001; kaufman 2003; maguire & pitceathly 2002). table 4: programme outline and time allocation of the home-based stroke training programme. the researcher and district mdps from the mdp-cig delivered the sessions (table 4) and were assisted by another physiotherapist and physiotherapy assistant with experience in training. the number of trainers per session varied between one and four depending on the content. a trainer to participant ratio of 1:6 was required for learning practical skills, with each trainer supervising two groups. training was conducted in the language preferred by the group and was delivered in afrikaans for two groups and in english for the third group. everybody was proficient in english reading, writing and speech. training was conducted at boland hospice during normal working hours. the researcher supplied the training resources such as printed participant and trainer manuals and powerpoints (which were only available in english for the pilots), exercise mats and equipment. observation the cigs used the following to observe the training programme and its effects: direct observation of all training delivery sessions by cig members. written and verbal feedback from trainers and chws after each session. a focus group interview (fgi) with selected chws. observation of chws working in households by cbs-cig members. observation of changes in coordination of services by cig members. training attendance ranged from 61 to 72 chws per session, with an average attendance of 67 (93%) per session. reasons for non-attendance included being on leave, missing the transport or prior commitments. those who missed sessions were required to work through the reference materials and were assisted by the relevant supervisors or mdps from the cig groups. between one and three cig members observed each session. trainers and observers kept written field notes. at the end of each session, the researcher facilitated feedback from the trainers and observers on the session structure, content, instructional strategy and methods, resources, achievement of goals and the trainer’s guide. observations and comments were recorded using a self-developed structured template. community health workers gave written feedback after each session on the achievement of the learning outcomes and their most valuable learning. before the start of each session, the trainer facilitated feedback from the chws on their experiences of implementing skills and knowledge to determine if any changes were required to the previous session. this was audio-recorded and summarised. following each session, the researcher, trainers and observers considered the observations from the different sources to reach consensus on what changes were needed. revisions to the training programme and participant and trainer’s manual were made immediately and reviewed when the session was delivered to the next group. following the training programme, a fgi was held with 15 purposively selected chws who attended all the training sessions, had worked with stroke survivors and their families during and following the training period, or were part of the cbs-cig (table 5). table 5: profile of the participants in the community health workers’ focus group interview. the fgi was led by the researcher using a semi-structured interview guide, which explored their experiences and perceptions of the programme, training resources and how chws had applied the content in their work, with specific examples. the fgi was conducted in afrikaans, with some english, over 75 min. the audio recording was transcribed verbatim, checked by the researcher and thematically analysed using atlas-ti® software and the framework method (mabuza et al. 2014; pope, ziebland & mays 2000). findings were organised into three main themes related to experiences and perceptions of the training programme; transfer of learning; and professional support (carter et al. 2014) and reflected on by the cigs. reflection the cigs met separately to discuss all their observations and reflect on their learning. the meetings were audiotaped and transcribed verbatim. the researcher summarised the consensus of learning in both cigs. the final integrated consensus of learning and recommendations were validated by both cigs via email. quality of the inquiry process the inquiry process was guided by 10 concepts of quality in cooperative inquiry (mash & meulenberg-buskens 2001). cig members aligned themselves with the purpose of the research and shared ownership of the inquiry process. the inquiry process was facilitated by the researcher in a consultative and collaborative manner. being both participants and researchers in the process, cig members engaged with both delivery and application of the training programme and reflection on their own experiences and observations. all observations, reflections and the emerging consensus of learning were documented. the researcher was responsible for sharing findings and conclusions between the cigs. ethical considerations the study was approved by the health research ethics committee 1 at stellenbosch university (ref s13/09/158) and permission was obtained from the department of health to conduct the study. results this section presents the consensus of learning from the two cigs. in order to illustrate what was learnt and to support its credibility, quotations from the various documents created by the cigs are added. personal identifiers are not used in the quotations as they would compromise confidentiality of the participants and therefore codes have been used. consensus from the cigs suggested that the training programme was successful in achieving its objectives. the cigs noted that out of the 6773 chw feedback forms received at the end of training sessions, 6764 (99.9%) reported that the learning outcomes were achieved. course structure and training resources cooperative inquiry group members found the trainer’s manual to be comprehensive, detailed and user-friendly and felt it made facilitation simple and easy for inexperienced trainers: ‘i think it was comprehensive, and on their [chws] level, easy to understand and to implement.’ (mdp-cig) community health workers found their manual, particularly the sequential drawings, easy to understand and use, both in the classroom and workplace. although english was the common language, afrikaans-speaking chws strongly advocated for afrikaans translations of the manual. xhosa-speaking chws were divided about the need for isixhosa translations, with the majority favouring english as there is no isixhosa vocabulary for many of the concepts. training programme design and development cooperative inquiry group members found that the training programme promoted a holistic, uniform approach. the modular structure made it easy to deliver the training over a timeframe suitable to the services. learning was consolidated through a spiral curriculum and by combining theory, modelling and practice with feedback. this meant that the core knowledge and principles were revisited and reinforced through practical activities and case studies: ‘and i think it was nice the way it was designed. the progress, the further we went, the more you see how everything integrates.’ (mdp-cig) despite the step-by-step picture-rich guidelines for practical demonstrations, trainers still modelled the skills in different ways. cig members suggested to develop video clips to ensure a standardised approach. cooperative inquiry group members recognised the importance of analysing learners’ characteristics, learning needs and prior competencies, to ensure appropriate training delivery: ‘because they, our carers [chws] are not academics. they are practical people. they are hands on … we’ve learnt that if i implement it, i will remember.’ (cbs-cig) both mdps and chws recognised that rehabilitation was a way of life, rather than a set of exercises: ‘because it took everyday activities and made it meaningful. it wasn’t just a lot of exercises … to do, it was something meaningful … and practical.’ (mdp-cig) ‘we know now that every movement you do is exercise. it is an exercise for the patient.’ (chw-fgi) one mdp reflected on how this emphasis contributed to refocusing their individual outpatient treatment planning and design, resulting in much more meaningful outcomes than before: ‘i only did sit to stand, something stupid, really very basic. and showed the wife. and he got better quickly, within a week! … it was the fastest i ever made a difference. because it was something so basic … and targeted. and i think that is good.’ (mdp-cig) the therapists reflected on their use of jargon and the importance of using plain language: ‘i realised that sometimes when we talk, we are too clinical. so it is not easy to explain … this is what i struggle with, to break it down to the level that they will understand.’ (mdp-cig) delivery of training training had to consider limited literacy of the chws, so trainers read the case studies and instructions aloud. likewise, the peer assessment checklists were simplified to accommodate slow reading speeds. the interactive delivery was successful in creating a relaxed atmosphere, engaging and motivating the chws, who had fun, worked hard and felt safe to ask questions: ‘there was a lot of laughter, a lot of fun. it was not this feeling of [sigh] we are in class. you know it was not that heaviness that one gets from the theory sessions.’ (cbs-cig) ‘it was very good and understandable. it was not boring. you finished up not being tired, because the person who is standing in front of you is explaining and we understand him.’ (chw-fgi) community health workers could identify with the scenarios and characters in the case studies. the case studies required chws to role-play both the stroke survivor and caregiver and this experience motivated them to try out the knowledge and skills learnt in the sessions on their own patients: ‘i noticed that as they were talking amongst each other, they were hearing things that they did not know before. but they could immediately click and relate it to their patients. “okay, so i am going to do this next time i get to a, b or c”.’ (mdp-cig) ‘it was very well presented. and the case studies worked very well also. each time, we also were the patient. we enjoyed that a lot.’ (chw-fgi) ‘the case studies were beautiful. in all the case studies we could see our own patients.’ (chw-fgi) multidisciplinary professionals reflected that they previously perceived chws to be uninterested in training. they now realised that several factors contributed to this perception. they had not adequately analysed the chws’ learning needs and overestimated their knowledge, resulting in the training being too complex. in addition, they recognised that they had used too much jargon and theory: ‘i think it worked very well, because they had to first problem solve between themselves. “what did she say again about that and so … oh, yes! now we can work out the case study. and then we do it practically.” then it is so much easier, or learning is faster. so, after theory, the case study that had to be completed. and then the questions came up about things they have not fully grasped yet. i think, it really worked well.’ (mdp-cig) the methodology was successful in integrating theoretical and practical principles. it made sense to chws why things had to be done a certain way: ‘[the training] made things more clear and easier for me. many of the things we did before. but we did not understand why we were doing it. but we can improve now.’ (chw-fgi) cooperative inquiry group members commented on the studiousness and eagerness with which the chws participated and how hard they practiced and worked towards mastering the skills. they recognised the importance of practice with feedback to learn skills: ‘i think everyone was eager to learn, because there was a lot of things they did not know. and i think the practice, the practical sessions, taught them a lot. the fact that you are not only hearing something, but that you are also doing it.’ (cbs-cig) the chws appreciated that they could practice the skills and get immediate feedback, something they did not often experience in training: ‘just to sit and listen … no! that is boring! that is where i get lost.’ (chw-fgi) ‘we practiced! we did not do nothing. there was action! we were doing [things] so that we could learn.’ (chw-fgi) the therapists were surprised by the time required for some chws to master the skills and knowledge, despite the simplicity of the training programme. they reflected that they previously underestimated how much time was needed for practice: ‘something that was very valuable to me was that i realized in the sessions that … we assume that they will also know something that is obvious and comes easy to us … but if you actually physically do the practical, then you realize it does not come naturally.’ (mdp-cig) the feedback to chws from peers and trainers in these sessions was an essential part of the chws’ learning. the mdps found these activities useful in formative assessment of the chws. they also suggested that learning could be further strengthened by additional supervised practice, during home visits, as well as formal assessments of knowledge and skills. homeand community-based care service the training programme defined the chws’ roles clearly. this, together with being able to explain their roles, the rehabilitation process and the responsibilities of the caregivers and stroke survivors, helped them to confidently set goals with families and provide motivation: ‘what i observed was that they work much more confidently with the patient. they now know what to do!’ (cbs-cig) where stroke survivors and caregivers were previously passive recipients of the home-based service, chws now actively engaged them in a functional, task-oriented approach. community health workers gave step-by-step instructions, demonstrated, guided and supported the stroke survivors and caregivers in activities such as bed mobility, transfers, washing, dressing and getting out of bed: ‘i was amazed about how confidently the carers [chws] now interact with the families and train them … no, before, there would have been no training.’ (cbs-cig) ‘the patient did it [able to assist]. she (chw) encouraged her, and boosted her self-esteem and confidence … and the patient also feels this is about me as patient, i am important.’ (cbs-cig) community health workers felt confident sharing knowledge, teaching skills, providing assistive products and addressing environmental barriers. their pride and excitement were tangible: ‘before the patient always struggled [to transfer] and two of us had to literally lift him into the wheelchair. we placed the transfer board on the wheelchair. and he transferred easily to the wheelchair. on his own!’ (chw-fgi) after having always given the stroke survivor a bed-bath and dressing him, one chw explained how she patiently guided and motivated him to assist her with these tasks: ‘and he did it! he did it very well! and he was so excited to be able to do it!’ (chw-fgi) another chw shared how she motivated a stroke survivor who was unsafe because of an unstable ankle to use his ankle-foot orthosis and assisted him with walking. where before he had to be reminded to use the orthosis, he now asked for it when he got up in the mornings: ‘he feels that the foot splint makes a difference. he says he actually now regrets not wearing it before … it makes such a difference to his walking. he moves around the house so easy now. he couldn’t do it before. such a difference!’ (chw-fgi) community health workers explained that they now also approached their routine tasks such as giving medication in a more therapeutic way. for example, when supervising and guiding a stroke survivor to take their medication, they encouraged use or support of the affected arm and hand as well: ‘i place the water on the weak side, then i say to her: “you know which hand to use”.’ (chw-fgi) community health workers reported that where they were previously blindsided by poverty and lack of funding in the provision of assistive products, they now had knowledge to make low-cost assistive products such as a self-made plate guards, one-hand spreading boards, commodes and mattress protectors. they enthusiastically shared their experiences and the resulting positive outcomes in empowering caregivers and enhancing dignity and independence in stroke survivors. a chw shared the outcome of giving advice on basic bladder management and providing a self-made commode: ‘and now it is much better because i don’t get that smell of urine when i enter the house. and it was also not nice for her. but now it is so much better. the smell is hardly there anymore, now that she regularly uses the commode.’ the speechand language therapist recounted an appropriate referral and management by a chw who recognised a possible swallowing problem when she observed the stroke survivor choking and coughing when drinking. the chw also provided appropriate advice and addressed the stroke survivor’s sitting posture and head and neck alignment when drinking. not only did the chws recognise how their training facilitated independence, but also restored dignity and pride: ‘the training benefitted us a lot, because [after the stroke] the patients had lost their pride. they previously did everything for themselves. and since we’ve learnt more about stroke, i think they have now also found themselves again.’ (chw-fgi) this resulted in a person-centred approach that was tailored to the needs of individuals and enhancing motivation and dignity. service implications community health workers were empowered through this programme to confidently interact with families: ‘before we did this training, you got to the patient and felt helpless. you did not know what to say. no! but now, you can go with confidence and teach them.’ (chw-fgi) community health workers felt that the training programme defined their roles clearly, and that this, together with being able to explain their roles, the home-based rehabilitation process and the responsibilities of the caregivers and stroke survivors, helped them in goal setting with families and provided motivation: ‘it helps you, otherwise you get burnt out. and tomorrow, you don’t even feel like going there, because you always have to do everything for the person. you must do everything! you must do this, you must put him in bed, you must do that … but now you can explain everything. how it works. it is a change in mindset, but it is better, much better.’ (chw-fgi) cooperative inquiry group members recognised that the training programme was an appropriate community-based intervention that improved phc service delivery and led to more person-centred care. the chws were able to offer a more comprehensive service that improved access to care for stroke survivors. this approach resulted in the appropriate use of human resources on the phc platform: ‘i think it just enables our people [chws], they feel more empowered … but is also then impacts that many patients. so, i really pleased that we have been a part of it …we are grateful. and it has identified things like how to work better with the therapists.’ (cbs-cig) the mdps were excited by how the intervention benefitted large numbers of patients and improved both continuity of care and coordination of rehabilitation: ‘i think it [the training programme] was very good and the principles were very good. these are the things where they [chws] can assist us a lot … i think that [working with chws] would be ideal … i think already our contact sessions with our patients are not enough and so i think we are anyway moving towards that kind of treatment approach that we have our extension which are going to be the home-based carers [chws].’ (mdp-cig) the approach also facilitated interprofessional learning: ‘before [the training], the therapists had absolutely no knowledge about what home-based carers do, but through the training, they got to spend time with them, and they could see what they have learnt and can have more confidence in them, [and recognise] that they can be another arm in the field. to fill that role in the community.’ (cbs-cig) the training programme promoted a comprehensive, uniform approach to home-based stroke care management in the district. cig members observed appropriate referrals from chws for assessment, intervention and assistive products. they also recognised that the chws could provide critical support between discharge from acute care and the first assessment by a therapist. not only did this strengthen the coordination and continuity of care, but also it extended rehabilitation service into homes of stroke survivors: ‘what also happens with the stroke patients is that when they are discharged from hospital, they – like i had a patient recently who had to wait a month before he could see the therapists. in the meantime, the carer [chw] can fill that gap and the patient will benefit.’ (cbs-cig) the mdps realised that the training programme resulted in an appropriate community-based intervention via chws. the mdps were inspired to use the same principles in the development of training programmes for other chronic conditions as well as in their own practice. however, they recognised their inexperience: ‘we can no longer function in isolation. there are … just far too many people who really need help. and we can’t continue to think, i, myself, cannot produce everything. it cannot continue like this … but to get there, that will require quite a mind shift.’ (mdp-cig) moving away from an individualised therapeutic model left the mdps conflicted as they experienced it as a loss of a core professional identity. this also created a sense of guilt for not meeting stroke survivors’ expectation themselves: ‘it is quite difficult for me. i think we are very clinical and one-on-one and that is what we do as a [profession]. and i think sometimes … i think you kind of feel that your role is being diminished.’ (mdp-cig) current service requirements were designed around individual interventions and this also made it difficult for the mdps to support chws. they pointed out numerous barriers to embedding the intervention in service delivery and the need for a systems approach and strong leadership. they lacked resources, knowledge and skills to develop community-based interventions and training programmes. another challenge was to improve the referral of clients from acute care to hcbc and mdps: ‘you know cbs is there. and rehab is there. but you struggle to link these services. you struggle to get a harmonized programme.’ (cbs-cig) while multisectoral collaboration, particularly with social workers, was reported as a direct result of the training programme, there was no systematic approach to improve such collaboration. multidisciplinary professionals also reflected on the shortcomings of their own training to adequately prepare them for phc and community-based interventions: ‘but since the mind shift is taking place, should this not also be implemented by the universities when they place their students so that the students know that when they come here, that they will not be working clinically, but that they will have a different role?’ (mdp-cig) the key learning of the cigs is summarised in table 6. table 6: summary of key learning of the cooperative inquiry groups. discussion this training programme appears to be the first community-based stroke programme specifically designed for a low-resourced phc setting with delivery by chws in the absence of formal rehabilitation services. the positive experiences and observations affirmed the contextual and cultural appropriateness and acceptability of the course structure and content (knettel et al. 2017), which chws found to be relevant, meaningful and easy to understand (perrin et al. 2010; world health organization 2018a). the interactive training methodology (abdel-all et al. 2017; hanger & wilkinson 2001; knettel et al. 2017; knowles 1970; world health organization 2018a) and the plain language delivery, as well as image-rich text of the training resources (doak, doak & root 1996) were appropriate to training adults with low literacy levels and resulted in an effective learning environment. learning was enhanced through the principles of adult education (kaufman 2003; knowles 1970), a spiral curriculum (harden & stamper 1999) and skills learning (abdel-all et al. 2017; kaufman 2003; knettel et al. 2017; maguire & pitceathly 2002) (kaufman 2003; maguire & pitceathly 2002) as has been noted elsewhere (hanger & wilkinson 2001; nadar & mcdowd 2008; pitthayapong et al. 2017; world health organization 2018b; yan et al. 2016b). community health worker learning can be further strengthened and consolidated by supervised practice in the community (nesbit & clark 2019). the training package followed a functional approach, based on normal movement, focusing on the transfer of practical skills and empowerment of the family caregiver, but at the same time offering a beneficial therapeutic approach to facilitate independence in the stroke survivor. this task-shifting rehabilitation intervention is simple and appropriate to the chws’ scope of practice, is in line with the national training of chws (south african qualifications authority 2018a, 2018b, 2018d), does not overlap with that of therapists or other mid-level community rehabilitation workers and is potentially effective (zhou et al. 2019). this approach can contribute to informing a generalist scope of rehabilitation practice and training for chws in south africa. despite a high burden of impairment and disability, the national chw training curriculum limits rehabilitation to elective modules (south african qualifications authority 2018a, 2018c). it would be better to provide such training as core modules that address the range of impairments and functional problems associated with acute and chronic diseases, disorders, injuries, trauma, disabilities, ageing, congenital and genetic conditions as promoted by the who (world health organization 2017). the training programme demonstrated the potential to empower chws to define their roles and transfer knowledge and skills to family caregivers. addressing the stroke survivor’s individual needs appeared to positively impact on their independence and dignity and enhanced a person-centred approach (bodenheimer et al. 2014a), which reportedly increased stroke survivor and caregiver participation and motivation. these observations highlighted the feasibility of integrating the programme into phc to improve continuity of care in the home and coordinate the transition from acute hospital care to hcbc. however, the training programme by itself is not able to ensure change in the design of service delivery. community-based interventions must be strategically integrated with facility-based services in a collaborative practice (bodenheimer et al. 2014b; harris et al. 2016; kane et al. 2016; mash et al. 2019). primary healthcare service barriers such as the lack of clinical practice guidelines, poor coordination and fragmentation of services, and lack of interprofessional and collaborative practice must be addressed (dookie & singh 2012; kringos et al. 2010). therapists’ roles in phc must be redefined as they need to be able to design, develop and support community-based phc interventions and be included in phc service planning and delivery, with clear roles in supporting chws (dizon et al. 2018; kane et al. 2016; naidoo, van wyk & joubert 2016). therefore, these roles should also be included in undergraduate programmes. the current reengineering of phc (national department of health 2020; ed. van rensburg 2012; western cape government 2014) may provide the appropriate backdrop to facilitate these changes. although all cig members were aligned with the research project, high service demands limited ownership and participation in the inquiry (higginbottom & liamputtong 2018). this limited their reflection (higginbottom & liamputtong 2018) on the design process and service implications, with little emphasis on personal change and learning. preand post-tests and/or summative assessments were not included as part of the initial implementation, but would need to be included in future. this intervention was situated within the context of the local mainstream health system and its allopathic paradigm that did not easily embrace traditional healers or indigenous knowledge on stroke and rehabilitation. the findings of the study can only be transferred to similar contexts and group characteristics. recommendations the initial evaluation of the programme is positive and congruent with the move towards copc in south africa. further evaluation of both implementation in cbss and the effectiveness of the intervention are needed. firstly, the health and psychosocial outcomes should be determined quantitatively. and secondly, implementation research should investigate how to integrate the programme into service delivery, including links to mid-level community rehabilitation workers and therapists. the participatory methodology could provide a foundation for the development of additional community-based interventions. the scope of practice for chws should incorporate the roles and competencies defined in the training programme. the training programme could be integrated into preand in-service training of chws. the district health services should consider adopting the model of chw-led rehabilitation training of caregivers and the implications for the roles of mdps in training and support of chws. conclusions participatory action research provided a useful methodology for an inexperienced phc interprofessional team to design, develop, implement, evaluate and refine a new home-based stroke training programme. initial evaluation of the programme was positive in terms of its impact on clarifying the roles of chws and empowering them to deliver person-centred services to caregivers and stroke survivors. implementing community-based programmes requires coordination of care across multiple sectors and healthcare levels and the need for a systems approach and leadership to embed the intervention in service delivery. further evaluation of the effect on caregivers, stroke survivors and service delivery is needed. acknowledgements sections of this manuscript, 33%, are published in a thesis submitted in partial fulfilment of the requirements for the degree of doctor of philosophy in the faculty of medicine and health sciences at stellenbosch university entitled ‘the design, development, and evaluation of an appropriate home-based stroke rehabilitation programme for a rural primary healthcare setting in the western cape, south africa’. supervisor: prof robert mash. published: december 2020. refer: https://scholar.sun.ac.za/handle/10019.1/109290. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions e.s. conceptualised the study, collected and analysed data and reported on the findings. r.m. supervised e.s. as part of her doctoral studies throughout the research process and all authors approved the final manuscript. funding information this work was supported by the stellenbosch university rural medical education partnership initiative through the president’s emergency plan for aids relief (pepfar) through hrsa under the terms of t84ha21652, discovery foundation award for healthcare in rural and underserved areas, stellenbosch university harry crossley fund and fund for innovation and research in rural health, international bobath instructors training association (ibita) and 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occupational therapy, new york university, new york, united states of america citation njelesani, j., si, j. & swarm, d., 2022, ‘unreported and unaddressed: students with disabilities experience of school violence in zambia’, african journal of disability 11(0), a849. https://doi.org/10.4102/ajod.v11i0.849 original research unreported and unaddressed: students with disabilities experience of school violence in zambia janet njelesani, jessica si, drake swarm received: 28 jan. 2021; accepted: 04 feb. 2022; published: 30 mar. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: violence against school children is a prevalent global issue. despite the high prevalence of school violence in zambia, there is limited research on students with disabilities’ experiences of school violence. objectives: guided by the socio-ecological model for bullying, the aim of this study was to understand students with disabilities’ experiences of school violence in the lusaka and southern provinces of zambia. methods: a qualitative descriptive study was conducted with 14 purposively sampled boys (n = 6) and girls (n = 8) with disabilities. data were generated using semi-structured interviews and child-friendly methods. child-friendly methods were co-constructed with zambian youth with disabilities in order to ensure cultural appropriateness and included vignettes, cartoon captioning, photograph elicitation, drawings, and sentence starters. qualitative data were analysed by thematic analysis. results: the themes illuminated that violence against students with disabilities occurs frequently but goes unaddressed. moreover, students with disabilities were being blamed for causing the violence, and therefore, considered a risk to others. participants reported that they turn to trusted teachers for support. conclusion: this study illuminates the violence students with disabilities experience within the zambian education system, with implications for school policies and programmes, peer education, and teacher training to create a safer education environment for students with disabilities. keywords: qualitative; zambia; inclusive education; bullying; violence; disability. introduction violence against school children is a prevalent worldwide issue (hui et al. 2018; njelesani 2019; njelesani et al. 2018), with children with disabilities being 3.7 times more likely to experience violence than their non-disabled peers (fleming & jacobsen 2010). in this study, ‘school violence’ is defined as ‘all forms of physical, or mental violence, injury and abuse, neglect or negligent treatment, maltreatment or exploitation including sexual abuse’ (office of the united nations commissioner for human rights 1989). school violence leads to many negative consequences including increased risk of depression, suicide attempts and low educational attainment (centers for disease control and prevention 2014). the increased violence against students with disabilities is directly related to their exclusion in schools and the community (mepham 2010). therefore, the right to feel safe in schools is dependent upon inclusion. however, research into inclusive education has largely not considered child protection issues. therefore, greater research is needed to understand how to prevent and address school violence against students with disabilities. research studies on the effects of school violence and the possible methods of mitigating this global issue for students with and without disabilities have primarily been conducted in high-income countries, with less data generated from low and middle-income countries (lmics). as a result of the limited research on the experiences of school violence among students with disabilities from lmics, this qualitative descriptive study explores the experiences of school violence among students with disabilities attending mainstream schools in the lusaka and southern provinces of zambia. disability in zambia there are many educational policies in zambia, for example, the education reform document (1977), focus on learning (1992) and educating our future (1996) that lay the foundation for current practices in inclusive education (chitiyo & muwana 2018). these policies are supported in the disability act of 2012, promoting access to education (republic of zambia 2012). historically, students with disabilities attended segregated special schools in zambia; however, there has been a move to inclusive education in mainstream schools over the past few decades (chitiyo & muwana 2018). however, despite the existing legislation and increasing awareness and efforts to include all learners, educational opportunities for children with disabilities within the zambian education system are more limited than for their non-disabled peers (njelesani et al. 2014). fewer children with disabilities (80.8%) than non-disabled children (89.9%) reported having attended school (unicef 2016). this education gap leads to inequities for students with disabilities with harmful long-term effects. the lack of inclusion is because of many factors, including poverty (peele, gill & wainscott 2020), inconsistent implementation of laws and policies at the local level, and disability stigma stemming from culturally driven fears and misunderstandings that stereotype children with disabilities (unicef 2018), ultimately denying them their rights and resources. violence against children in zambia despite zambia’s adoption of legislation that bans corporal punishment in schools, a high prevalence of violence is reported. in 2014, zambia conducted the violence against children survey (vacs), a cross-sectional household survey that produced a national-level estimate of the physical, sexual and emotional violence experienced by the youth in zambia. the results found that approximately half of boys and girls experienced one or more forms of sexual, physical and emotional violence in their childhoods, with physical violence being the most common. the first incidents of violence occurred between ages 6–11 for girls and ages 12–17 for boys (vacs 2014). no data were disaggregated according to disability or impairment type; however, given the cultural stigmas against disabilities it is likely that violence rates will be higher against boys and girls with disabilities. violence against students with disabilities school violence is widespread and institutionalised in zambia, where corporal punishment is considered as an inevitable part of school life. despite legislation aiming to prevent corporal punishment, there is reluctance from education authorities to address the problem and prosecute perpetrators (vacs 2014). this previous research provides a broad picture of the problem of school violence in zambia. students with disabilities face even greater victimisation (fleming & jacobsen 2010); however, there is a dearth of research on school violence against students with disabilities in zambia. furthermore, research globally has failed to report feelings of students with disabilities and perspectives on their experiences. children with disabilities have the right to participate in research, so their priorities, needs and experiences are included. this right is upheld by article 12 of the united nations convention on the rights of the child (crc), which indicates that every child should have the right to express their views freely (crc 1989). research aim the aim of this study was to understand the experiences of school violence among students with disabilities in the lusaka and southern provinces of zambia. including students’ perspectives provided youth with disabilities opportunities to talk about their past and current school violence experiences. the research findings allow for a greater understanding of the context in which students with disabilities experience school violence in zambia, which is essential for the development of intervention methods. these intervention methods established with the consideration of students’ personal, social, educational and cultural context are more effective (silva et al. 2017). theoretical framework the socio-ecological model for bullying was used as the theoretical framework to better understand the violence against students with disabilities, from the individual (e.g. age, gender, and type of impairment), relationship (e.g., peers, parents, teachers), community (e.g. school policies), and societal levels (e.g. cultural norms). the model recognises that school violence does not occur in isolation between perpetrators and victims as individuals are affected by their surroundings. therefore, interventions also need to target broader social environments (espelage & swearer 2009). previous studies using the model have shown that peer attitudes and a negative school climate are strongly associated with school violence (swearer et al. 2006). an ecological approach to examine the school system in which students with disabilities attend in zambia can provide a more holistic understanding of what is needed for successful interventions. reflexivity the authors have considerable experience in child protection qualitative research and experience working in zambia, including working with the local youth with disabilities and zambian research assistants in this study. as the authors of this article are located outside of zambia, and their outsider perspectives and experiences influenced the research, they worked in collaboration with zambian researchers and an advisory board of zambian youth with disabilities to mitigate concerns, including power dynamics. data were collected by the first author and a team of zambian researchers. the first author organised the research collaboration and has sustained it over 10 years (njelesani et al. 2013). methodology study design this study utilised a qualitative descriptive approach. it is an appropriate study design to explore people’s experiences and obtain descriptions of phenomena (sandelowski 2000). recruitment students with disabilities attending primary and secondary mainstream schools where inclusive education was offered were included in this study. participants were recruited from lusaka and southern provinces, the two largest provinces in zambia. purposive sampling was utilised to recruit students of varying ages, genders and impairment types. the participants were referred to the research team by the principals of the schools. participant inclusion criteria included being enrolled in a mainstream school and self-identify as having a disability. the recruitment was conducted until data saturation occurred (i.e., new information was not reported). ethical considerations the study received ethics approval from the institutional review boards at new york university and the university of zambia (reference number: 2018-jul-001a20). we obtained participants’ verbal consent before data collection. in order to protect the children during data collection, two people were present, including at least one zambian researcher of the same gender as the child. the locations for data collection were selected, taking into consideration participants’ accessibility needs, safety, convenience, and anonymity. the reports of abuse were notified to local authorities by the zambian research assistant following consent from the participant and their parent. the participants’ confidentiality was held to the highest importance, and we used pseudonyms in documenting the data and throughout this study. all participants were provided monetary compensation for participating. data collection data were collected in schools, at afterschool programmes and at disability organisations. the participants participated in two 60-min data collection sessions, where data were generated through child-friendly methods and semi-structured interviews. child-friendly methods were included to engage children and encourage expression given the power differences and stigmatising topics (teachman & gibson 2013). child-friendly methods were co-constructed with zambian youth with disabilities in order to ensure cultural appropriateness and included vignettes, cartoon captioning, photograph elicitation, drawings and sentence starters. data collection methods were first piloted with three students and modified to be more age and culturally appropriate. two data collection sessions were conducted with each participant 3–5 days apart. two sessions were conducted to build rapport with the participants as data collection addressed sensitive and stigmatising information. data analysis using thematic analysis (braun & clarke 2019) and the qualitative data management software taguette, data generated from interviews and child-friendly methods were analysed by all authors. data were first uploaded into taguette. data from the visual child-friendly methods (i.e., drawings) were treated as visual text, and a written description of each picture drawn as provided by the participant was uploaded (prosser 2007). each author familiarised themselves with the data by reading the interview transcriptions line-by-line multiples times and writing a memo that noted ideas and insights of what they were learning from the data. then, the team collaboratively generated a list of a priori codes (e.g., school violence norms) that came from the research aim, the literature review, and the socio-ecological model for bullying. data were coded using the a priori codes, and then inductive codes (e.g., youth seen as the risk) were developed from the data, added to the codebook and coded across the data set. during multiple team meetings, inductive codes were modified and defined. following coding, we reviewed all of the coded data, and codes were grouped into broader potential themes. using a thematic map, we reviewed all of the potential themes to determine whether themes were representative of the coded extracts and the entire data set. after multiple team discussions, reflections and refinements, themes were finalised, where each theme was named and defined. trustworthiness was ensured throughout the process by memo writing, using a theoretical framework to guide analysis, thoroughly detailing data collection procedures and analysis, and presenting themes with quotes from the participants. findings participant characteristics this study included 14 participants (six boys, eight girls), with age ranging from 12 to 20 years, and were enrolled in grade 4 to grade 12. all participants were students with disabilities enrolled in a mainstream public school in zambia. the participants had a range of impairments, including identifying as blind, deaf and having physical impairments. themes the themes illuminate that (1) school violence is a regular occurrence, (2) school violence goes unaddressed, (3) students with disabilities are considered the risk to others, and (4) students with disabilities identify one person as their primary source of safety. violence regularly occurs all 14 participants spoke of violence regularly occurring against them at school. the majority of the reported violence was emotional and was perpetrated by peers. this emotional violence from peers was reported to be very hurtful: ‘they say look at this cripple. when i start walking people think its comedy. those words really hurt, they can cause someone to start thinking negative of himself’ (ian, 12, male). peers also perpetrated physical violence. when asked to speak about the pictures they drew during data collection, one participant reported: ‘it’s a picture of someone pushing me. he pushed me very hard for no reason. i fell down the stairs near one of the classrooms. i cried, and people laughed because the boy who pushed me was small, but i was in a lot of pain.’ (paul, 20, male) another said of their drawing: ‘one of the boys has a stick, and he is using it to hit me on the football field’ (mary, 16, female). the participants also spoke of how teachers inflicted emotional abuse and greater corporal punishment than non-disabled students: ‘the teachers make fun of me. they say teacher w is my wife’ (kalonde, 18, male) and ‘they are rude, and they say words which will hurt you and the words ruin your whole day’ (ian, 12, male). several participants spoke of the physical punishments they received as a result of their difficulty in completing school tasks because of their disability: ‘i’m a slow writer [note taking from the blackboard], and the teacher is faster than me. after the teacher is done, the teacher rubs [erases the notes] on the board. i ask, “i am not yet done,” then the teacher says, “why are you being slow” and forces me to sit on the floor for an hour.’ (bupe, 10, female) one 13-year-old deaf female student disclosed the sexual violence she experienced from a staff member, which led to pregnancy. when prompted on the actions taken by the school, the girl indicated that the school authorities blamed her, and her behaviour was highlighted in a school assembly focusing on the consequences of bad behaviour. her experiences exemplify the following two themes of violence not being addressed and students with disabilities blamed for the assaults. violence goes unaddressed violence was not reported or addressed when it occurred in schools, as expressed by one student who had been victimised: ‘i don’t do anything. i don’t report them to the teacher’ (gabrielle, 15, female). even if a student reported an incident, there was a disproportion of action or repercussions that occurred. one of the students talked about how a teacher neglected to act: ‘i would report to the teachers on duty, but some teachers would walk away’ (kalonde, 18, male). another student wanted the non-disabled students to receive the same punishment as students with disabilities suffered: ‘they should take them to the police station like i was taken to the police station’ (peter, 14, male). not only there was a lack of response to stop school violence from occurring, but the students who reported also experienced negative consequences from teachers: ‘they chase us away, and sometimes they even laugh at us’ (wakumbo, 14, female). students with disabilities are considered the risk the participants reported that when incidents of school violence occurred, teachers blamed the students with disabilities, telling them it was their fault, and that they were the problem and disturbance: ‘one day when i was playing a boy hit me with a stick. when i complained to the teacher, the teacher said i could not play football anymore. he said i am the one who disturbs the team.’ (taona, 17, male) other students spoke of similar experiences: ‘the teachers don’t let me play. even when i wanted to join the chess club, they said i could not because i can’t hear’ (halima, 15, female) and ‘i want to play. they say i will hurt them with my wheelchair and i can’t kick a ball’ (chanda, 10, male). being blamed for the violence that occurred was reported in other school interactions, as one child spoke of when any incident happened, it was students with disabilities who were blamed: ‘some of the normal kids steal, and then the teachers think it is us. that makes me very angry. so now we stay near each other during break time and we stay near our class so that nobody can blame us.’ (paul, 20, male) when the students with disabilities were blamed, they often experienced greater violence, as one student spoke about mistakenly being brought to local authorities: ‘the teachers said i stole mrs. m’s food from her office and that i took a ball from the office to play with. mrs. m took me to the police station, and the police beat me. she told the police to beat me. they beat me with a stick.’ (wakumbo, 14, female) safety is not a place but a person during data collection, the participants were asked to describe settings where they felt safe and most scared. one’s home was identified as a location of safety, while inaccessible sites such as latrines were considered unsafe. the inaccessibility of places and activities fostered environments of exclusion leading to potential violence. one student spoke ‘playground is not good for us, especially when there are boys. i feel scared there because they don’t want us there, and they bother us when we go there’ (triana, 13, female). another student spoke of avoiding going to use the latrines: ‘i don’t feel safe going outside because anything can happen when i am trying to access that area’ (ian, 12, male). although the participants identified locations, more often the students identified peers or one teacher who provided them the feeling of safety: ‘i feel safe at school when i am in class or with other deaf kids’ (victoria, 13, female), and ‘i go to teacher mary’s house with the other kids on weekends, and we spend time together there’ (paul, 20, male). other children expressed their appreciation for teachers who protected and cared for them: ‘she buys us uniforms and clothes. she is the only one who does that for us’ (wakumbo, 14, female). discussion the findings overall illuminate that students with disabilities who participated in this study regularly experienced violence because of their physical and functional differences, and they were considered a risk to others and portrayed as the problem. this violence was predominately perpetrated by non-disabled school peers and went unaddressed by school teachers. to our knowledge, this is one of the first studies to explore the experiences of school violence against students with disabilities in zambia. the study’s findings support the limited existing research in the field of violence against students with disabilities, where students with disabilities are often marginalised and victimised (kabwe, mandyata & chakulimba 2020). children with disabilities are 3.7 times more likely to experience violence than non-disabled peers (unesco 2016). the amount of violence that students with disabilities experience is believed to be underestimated. this study findings support that notion as the themes identified was that violence occurs regularly but goes unreported or unaddressed. when students reported an incident of violence, there was a disproportion of action or repercussions made. in this study, not only there was no action taken by teachers but also some teachers discriminated against and abused students with disabilities. participants described different forms of violence in their interviews; however, they did not always report their experiences to authorities. this was in part, because of the fear of teachers and punishments they may receive and as authorities in the community may not be accessible. for example, persons who are deaf may not have access to report what happened because police do not use sign language (senne 2016). when considering the association between social-ecological factors in the school environment in zambia, and because all of the factors influence school violence in either direct or indirect ways, interventions must involve students, non-disabled peers, teachers, parents and the community. interventions aimed at non-disabled peers should include peer education at the individual level that impacts knowledge, attitudes and beliefs. previous studies have found that education that leads to an increased awareness of disability is significantly correlated with positive shifts in attitudes towards disability (parasuram 2006). a study on students’ social experiences with low vision in lusaka and mbala districts in zambia indicated that implementing sensitisation and advocacy interventions helped to reduce stigmatisation, discrimination, teasing and bullying. furthermore, the programme provided greater social inclusion for students with low vision (kabwe et al. 2020). without such peer education, greater stigma and discrimination may lead to further societal exclusion, bullying, aggression, feelings of shame and disengagement of students with disabilities from schools and the society (earnshaw et al. 2018). previous studies in zambia have found that to avoid being victimised, students will miss classes, which leads to lower performance in school (siziya, rudatsikira & muula 2012). we saw the lack of attendance in this study as recruiting participants was difficult, where many children with disabilities were not at school despite being enrolled. within the school curriculum, teaching respect for one another, and promoting positive values and attitudes towards peers should be included (bradshaw, waasdorp & johnson 2015). thus, peer education, other whole-school interventions and the teacher training will be essential components of anti-violence programmes in the schools studied, with concurrent work to strengthen policy at the community and society levels. although students identified some safe locations at school, most identified a person, particularly a teacher, who helped them feel safe. for students, a strong sense of belonging is dependent on high-quality relationships with teachers, as the quality of interpersonal relationships and how teachers, students, and parents relate to one another sets the tone for the school (mitchell, kensler & tschannen-moran 2018). this finding indicates that in the schools studied more supports need to be put in place for students with disabilities as there is a shortage of qualified inclusive education personnel across zambia. furthermore, not all mainstream teachers provide the same level of support to their students, and not all have received the same level of training, especially regarding the rights of students with disabilities and their increased risk of violence. at the school level, teachers and staff could benefit from in-service training on disability, risk factors to violence, how to address and report incidents, and non-violent methods to address the violence that occurs in the school. currently, zambia’s pre-service teaching programmes include a curriculum that educates teachers on providing support for students with disabilities. these programmes have proven useful to inform teachers on how to work with all students and have included educational psychology courses to strengthen student teachers’ knowledge and counselling skills to address psycho-social challenges (chitiyo et al. 2015). adding school violence as a compulsory topic in this pre-service teacher training could help ensure that students have more teachers who understand their rights and needs for a safe learning environment. critical to understanding how broader social forces and structures influence the violence experienced by students with disabilities in this study is that zambia has no single national policy against school bullying or violence, leading to varying policy implementation at the school level. bullying is strictly prohibited in some private schools, warranting suspension or expulsion, while most public schools do not implement such policies (siziya et al. 2012). the lack of clear and coordinated national school policies and guidelines was a key finding of a recent study on inclusive education in zambia (ngulube, njelesani & njelesani 2020). however, as suggested by ngulube’s study, teachers will favour implementing policies that respect the rights of children with disabilities with appropriate administrative, material and school leadership support. therefore, clear policy statements for school violence backed by technical, legal, and financial resources and the involvement of administrators, teachers, students and families are essential in creating safe schools. when considering how to address the zambian social contexts within which the violence occurs, how cultural discipline is practised in zambia must also be regarded. teachers may favour corporal punishment and view it as an appropriate way to discipline and protect children. while we did not interview teachers, the literature suggests that teachers may not believe that their actions were perpetrating violence as they were acting on behalf of parents at the school (kabungo & munsaka 2020). the key to ending corporal punishment in zambia requires work across ecological systems, including educating teachers on prosocial methods of discipline and advocating for implementing the existing legislation that bans corporal punishment with the support of parents, school staff, and local and religious leaders (breen, daniels & tomlinson 2015). limitations and future research limitations of the study were a small participant pool. the participants needed to self-identify as having a disability, and thus there was no open recruitment as referrals only came from school principals. the lack of attendance as many students with disabilities were not in schools may have resulted in fewer opportunities to generate data. having access to out-of-school students and alternative referral pathways for students (e.g. an opportunity to self-refer) would increase the quality and depth of data. also, only students were interviewed and future research could involve a variety of stakeholders, including teachers, parents and school administrators, across a larger subset of zambia’s population and not focusing solely on two provinces as micro-cultural differences can exist. conclusion while there are government policies in place that support a safe education for all in zambia, school violence remains a prevalent issue. students with disabilities are at greater risk of being marginalised, bullied and violated than their non-disabled peers. study findings suggest that violence in schools goes unaddressed with little or no repercussion for perpetrators, leading to lower educational and societal participation from marginalised students. implications from the findings highlight the need for strengthening actions across systems to address the school violence experienced. for example, as students generally identified only a single person who advocated for them, educator training should include disability inclusive content for teachers and staff. furthermore, as research on school violence against students with disabilities in lmics is scarce, there is a need for further research to determine how to best direct resources, implement policies and create culturally contextual specific programmes to address school violence. acknowledgements the authors thank the participants who took part in the study and chileshe gloria mange for her assistance with data collection. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.n. designed the study and led recruitment, data collection and analysis. j.s. and d.s. 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(eds.), handbook of school violence and school safety: from research to practice, pp. 257–273, mahwah, lawrence erlbaum associates, new jersey. teachman, g. & gibson, b.e., 2013, ‘children and youth with disabilities: innovative methods for single qualitative interviews’, qualitative health research 23(2), 264–274. https://doi.org/10.1177/1049732312468063 unesco, 2016, ‘leaving no one behind: how far on the way to universal primary and secondary education?’, in the challenge of getting all children and youth into school is immense, pp. 1–16 [online], viewed 31 march 2021, from https://unesdoc.unesco.org/ark:/48223/pf0000245238. unicef, 2016, zambia national disability survey [online], viewed 31 march 2021, from https://www.unicef.org/zambia/reports/zambia-national-disability-survey-2015#:~:text=key%20findings%3a,to%20be%204.4%20per%20cent. unicef, 2018, qualitative study from zambia on barriers to and facilitators of life-long learning [online], viewed 31 march 2021, from https://www.unicef.org/zambia/media/1156/file/zambia-nds-disability-and-education-2015.pdf. violence against children survey (vacs), 2014, violence against children in zambia: findings from a national survey 2014, pp. 2–32 [online], viewed 31 march 2021, from https://www.unicef.org/zambia/media/1091/file/zambia-vac-study-2018.pdf. abstract introduction methodology findings discussion conclusion acknowledgements references appendix 1: interviewing guide appendix 2 about the author(s) sibulelo gawulayo department of social work, faculty of community and health sciences, university of the western cape, cape town, south africa charlene j. erasmus centre for interdisciplinary studies on children, families and society, faculty of community and health sciences, university of the western cape, cape town, south africa anthea j. rhoda department of physiotherapy, faculty of community and health sciences, university of the western cape, cape town, south africa citation gawulayo, s., erasmus, c.j. & rhoda, a.j., 2021, ‘family functioning and stroke: family members’ perspectives’, african journal of disability 10(0), a801. https://doi.org/10.4102/ajod.v10i0.801 project research number: 130416-049 original research family functioning and stroke: family members’ perspectives sibulelo gawulayo, charlene j. erasmus, anthea j. rhoda received: 17 sept. 2020; accepted: 10 sept. 2021; published: 25 oct. 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: stroke survivors often experience permanent or temporal physical and psychological stroke impairments. as a result, stroke survivors are often discharged to recover in their home environments and are cared for mostly by family members. additionally, caregiving roles are often assumed without any formal training or preparation whatsoever. this can transform the family’s functional patterns due to adjustments that are made to accommodate the caregiving needs. objectives: to explore the experiences and influence of stroke on families and on family functioning. method: explorative descriptive qualitative research design through the use of in-depth interviews were employed as the means of data collection. the sample size was eight (8) family members and was guided by the saturation point. data was thematically analysed. results: four themes emerged from the analysis: 1) reduced interactions with family members due to communication barriers, 2) the influence of stroke on family relationships, 3) emotional engagement in caring for a family member with a stroke and 4) financial implications of stroke on family functioning. this study found that stroke can influence the family functioning negatively as family members may be forced to change their functional patterns. however, some family members reported positive experiences, they developed a supportive structure to accommodate the new life of the stroke survivor. conclusion: using the mcmaster’s model of family functioning, this study found that stroke is a threat to the six dimensions of family functioning: 1) problem-solving, 2) communication, 3) roles, 4) affective responsiveness, 5) affective involvement, and 6) behaviour control. keywords: stroke; stroke survivor; stroke impairments; activities of daily living (adl); family members; family functioning and dimensions. introduction stroke is a public health concern with a devastating impact on the individual’s health and well-being, especially in developing countries such as south africa (kumar, kaur & reddemma 2015; rhoda 2014). the sudden occurrence of stroke is shocking and can be life-changing, leaving the stroke survivor and their family unprepared for dealing with its aftermath (lutz & yound 2010). worldwide, stroke is responsible for approximately 5.7 million deaths annually (kim & johnston 2013). in south africa, stroke is responsible for 25 000 deaths annually and more than 95 000 survivors live with disabilities caused by stroke (taylor & ntusi 2019). the most common neurological dysfunctions caused by stroke include mobility, speech problems and the inability to perform activities of daily living (adl) (ramos-lima et al. 2018), such as home management, self-care, work and social roles (ahn & hwang 2018). as a result of decreased physical functioning, stroke survivors may find it difficult to actively participate or engage in social activities (whitiana, vitriana & cahyani 2017). this may lead to social isolation and contribute to depression and feelings of helplessness (brookfield & mead 2016). as a result, most stroke survivors are often assisted by their family members to attain adl. furthermore, the overburdened south african public healthcare system struggles to provide adequate support for stroke survivors, thereby passing the caregiving responsibilities to their families (maredza & lumbwe 2016). thus, maintaining supportive ties with family members, relatives and close friends has been found to exert a positive influence on the life of the stroke survivor (kumar, kaur & reddemma 2016; rhoda 2014). however, because of the unexpected transitions from providing care and support to the stroke survivor (jiang et al. 2014), the family functioning of such families is often threatened (gillespie & campbell 2011). therefore, this article discusses the family functioning following the stroke of a family member. upon discharge, stroke survivors are often cared for by their families who ensure that the home environment is conducive enough to support the recovery process (whitiana et al. 2017). when first receiving the stroke diagnosis, the family is often confused and worried about the life of their family member. an acute state of distress is typically followed by feelings of shock, disbelief, fear and anxiety because of uncertainties about the future (lutz et al. 2011). although this is the case, helping the stroke survivor to achieve adl becomes a priority to families of stroke survivors. activities of daily living include the everyday activities such as bathing, eating, dressing, toileting, bladder and bowel control, mobility, transfers and the ability to climb stairs (rhoda, mpofu & de weerdt 2011:16) these activities are often identified as self-care. an additional noteworthy point is that the process of caring for the stroke survivor is very demanding and can take a physical and psychological toll on the caregiver, leading to burnout (gillespie & campbell 2011; kumar et al. 2016). caring for the person with stroke also has a detrimental impact on the well-being and overall quality of life of family members (guo & liu 2015). this is further supported by gillespie and campbell (2011) who found that the caregiving and all due considerations post-stroke have a negative effect on family functioning. family functioning – a central concept in this study – refers to the family’s day-to-day patterns that are practiced within the family context to enable favourable conditions for family members to thrive (mousavi et al. 2015) and represents the family’s capacity to ensure that the basic and essential needs of its members are met (gunaratne 2008). dai and wang (2015) identified that the dimensions that inform family functioning are tasks and roles, communication patterns, emotional expression, involvement, behaviour and values and rules. chronic diseases have a considerable negative effect on the lives of family members as their day-to-day functioning may change or be disrupted (golics et al. 2013). in this regard, families struggle to maintain a stable environment for the stroke survivor and other family members while providing caregiving (lutz et al. 2011). similarly, gillespie and campbell (2011) found that post-discharge from the healthcare facility, families explore various measures to accommodate the stroke survivor’s needs. in seeking to determine appropriate measures to accommodate the new life of the stroke survivor, areas of family functioning, including financial well-being, may be strained (ramos-lima et al. 2018). botha, wouters and booysen (2018) found that the financial well-being of the family is an important aspect that measures the family’s ability to care for the material needs of its members. king et al. (2010) opined that sustaining financial stability post-stroke is a challenge as family members struggle to find a balance between work and caregiving. they are often absent from work to care for the stroke survivor. for the most part, kumar et al. (2016:58) reported that ‘caregiving tasks typically require time and energy for months and even years together’. consequently, the latter may compromise the family’s ability to cover caregiving costs that include, amongst others, the recommended diet and transportation costs for outpatient therapy services (king et al. 2010; ski et al. 2015). another dimension of family functioning impacted by the incident of stroke is family relationships. children and spouses often experience altered relationships with their parents and life partners. parents who experienced a stroke may be limited to assume their parental responsibilities post-stroke (harris & prvu bettger 2018). in addition, stroke has a significant effect on marital or partner relationships. a study conducted by kitzmüller, asplund and häggström (2012) reported that: [b]oth stroke survivors and spouses experience role changes, an altered perception of self and a loss of social activities, and these changes influence both personal identity and the dynamics of spousal relationships. (p. 1) it is therefore apparent that stroke alters family relationships as the family progresses to establish a new lifestyle. in addition, stroke survivors often experience communication deficits that result in speech problems, such as aphasia, dysarthria or apraxia. regarding stroke-related communication challenges, wray and clarke (2017:2) stated: up to one-third of survivors will experience communication difficulties post-stroke including aphasia, dysarthria or apraxia of speech 12–15 resulting in difficulties with language comprehension, speech production and difficulties with reading and writing. families of stroke survivors may thus find it difficult to maintain good communication, although not necessarily because of the disease itself, but because of the psychological impact and coping strategies, which affects how family members react towards each other (guo & liu 2015). in light of the given discussion, family functioning is an important area that must be safeguarded post-stroke as the family plays a pivotal role in the stroke survivor’s recovery (creasy et al. 2015). however, a relatively unexplored area that appears to have received little attention is the impact of stroke on the dimensions of family functioning. information on how families and family members respond to the incident of stroke is important and must be explored to gain insight into their perceptions and experiences (bryer et al. 2010) to optimise family functioning, make improvements where necessary and prevent overburden of family caregivers. research, both local and international (cameron et al. 2014; elloker & rhoda 2018; hassan, visagie & mji 2011; kubina et al. 2013; ski et al. 2015), has focused more on the experiences of caregivers and the relationship between social support and participation post-stroke. studies on stroke (khondowe, rhoda & mpofu 2007; simeone et al. 2015; wagachchige-muthucumarana, samarasinghe & elgán 2018) have explored the experiences of caregivers, with few focusing on the impact of stroke on family functioning. to our knowledge, information that documents the family’s experience of stroke and the influence of stroke on family functioning is limited. elloker and rhoda (2018) explored factors that contribute to social support and participation post-stroke. on the other hand, extensive research focused on the caregiver’s experiences of caring for individuals who experienced a stroke (hassan et al. 2011; khondowe et al. 2007; kumar et al. 2016). this article therefore hopes to shed light on the influence of stroke on family functioning within the south african context, as this is often an overlooked research area. conceptual framework the mcmaster’s model of family functioning and the family systems theory is used to conceptualise the functioning of families with a stroke survivor within the six dimensions, namely (1) problem-solving, (2) communication, (3) roles, (4) affective responsiveness, (5) affective involvement and (6) behaviour control (miller et al. 2000; mousavi et al. 2015). these dimensions determine a conducive environment where family members develop relationships and establish emotional connections in order to withstand life’s shortcomings. ensuring a conducive environment during stroke is a challenging task that disrupts normal family functional patterns (przewoźnik, rajtar-zembaty & starowicz-filip 2015). in a study that explored the influence of stroke on families, gillespie and campbell (2011) and guo and liu (2015) found that establishing a secure caring environment for the stroke survivor is a tiresome process that requires families to adjust their normal functioning, which impacts negatively on the dimensions of family functioning, such as family communication, individual roles, involvement and family relationships. mcmaster’s model of family functioning gives an overview of family functioning based on the aforementioned dimensions. in addition, the model gives a systematic overview of the family functioning. the proposed dimensions of the family functioning guided the development of the interviewing guide and the presentation of findings. an interviewing guide is attached in this article, see appendix 1. there are no studies that have been conducted that look into the family functioning of stroke survivors using the mcmaster’s model of family functioning. however, the model can be used to explore the functioning of families following a tragic event (boterhoven de haan et al. 2015; fogarty 2009). both studies found that family functioning is an important part of our lives with a significant contribution to our day-to-day functioning. this model is therefore relevant in this study. methodology research design an explorative and descriptive research design was used to explore the influence of stroke on family functioning. such a design is mainly used to gather new information and to create meaning out of participants’ lived experiences (blanche et al. 2006). face-to-face in-depth individual interviews were conducted to collect data guided by a predetermined interview guide. the latter is a pre-planned set of questions, designed by authors of this study to collect data and guide the process of data collection (akaranga & makau 2016). all participants were afforded full opportunity to express their views regarding the influence of stroke on their family’s functionality. research setting this study was conducted in a peri-urban community in cape town, south africa. despite the fall of apartheid in 1994, the conditions in many south african communities remain unaltered because of slow economic development. rapid intervention is therefore needed to improve these dire conditions (charman 2017). the population of this study consisted of african people residing in the under study setting. participants were accessed from a community-based organisation that provides psychosocial support to stroke survivors and their families to cope with stroke. participants eligible participants included family members of stroke survivors who assisted them with adls. the inclusion criteria for participation required that participants had to (1) be a family member of a stroke survivor, (2) be residing in the peri-urban community under study and (3) have been providing care for at least 6 months, such as assisting them to assume adl. research found that the first 6 months of caring for a stroke survivor is considered the most crucial and challenging period, as the focus is on establishing the best possible care (torregosa, sada & perez 2018) and adjusting family routines and processes to accommodate the stroke survivor. the sample size of this study consisted of eight family members (which included parents, children, siblings, and spouses) of a stroke survivor. participants’ characteristics eight participants (p) (five female and three male), with a mean age of 48 years, took part in the study. the highest level of education was a diploma and lowest was grade 7 (entry level to high school in south africa). the participants were closely related to the stroke survivor and included children, siblings, spouses and parents. two of the eight participants were employed on flexible contracts and six were unable to work because they had to care for the stroke survivors. lastly, participants in this study were predominantly african people. they represent peri-urban population in the western cape. appendix 2 is a form that was used to collect the demographic information of participants. data collection an information session was conducted to explain the purpose of the study and to initiate contact with suitable participants. data were collected through face-to-face individual interviews. participants indicated that they would like to be interviewed in the comfort of their own homes and arrangements were made accordingly. all the interviews were audio-recorded, and field notes were taken after obtaining permission from the participants. interviews were conducted in isixhosa, participant’s home language and transcribed verbatim by an independent transcriber. data analysis an inductive bottom-up approach of data analysis as proposed by creswell and plano clark (2007) was followed as it allows the researcher to group and organise the data and make sense of it by creating meaning. the presentation of themes followed tesch’s eight steps of analysing and reporting qualitative findings (theron 2015). the interviews were transcribed verbatim and checked to verify the accuracy of each participant’s exact words. verifying and checking transcripts promotes rigour and accurate reporting of the research findings (birt et al. 2016). following the suggestion of theron (2015), the researcher read and re-read the transcripts in order to formulate a general sense of the participants’ experiences. the latter led to the identification and grouping of similar experiences as categories and codes. the initial analysis identified five main major categories, underpinned by 11 codes. this includes, category (1) family’s reaction to stroke with no codes, category (2) caregiver’s experiences with four codes, category (3) experiences of living with a stroke survivor with four codes, category (4) influence of stroke on the family consisting of three codes and lastly, category (5) the needs of families of stroke survivors with no codes. these were further refined and grouped as themes and sub-themes. four themes concluded the findings of this study. ethical considerations this study was ethically approved by senate higher degrees committee (reference number: hs17/10/20) of the university of the western cape. furthermore, access to participants was granted by helderberg stroke support group (hssg). information sessions were conducted by the researchers to orientate the participants to the study, explain what would be expected of them and to assure them that privacy and confidentiality would be upheld. participation in the study was voluntary, without any personal gain or remuneration. participants were also free to withdraw from participation at any stage without fear of being penalised. in addition, participants were afforded an opportunity to clarify how they would like to be addressed during contact time with researchers in respect of their cultural terms. there was no potential harm detected in the planning and execution phase of this study. external counselling referral was secured prior to the execution of this study. participants’ involvement was completely confidential and pseudonyms were used to protect their identities and no personal information was disclosed. all interview data were stored on a password-protected computer with the password known only to the researcher. data will be disposed of in a suitable manner after 5 years as prescribed by the institution. trustworthiness qualitative research needs to ensure rigour and trustworthiness in the reporting of the study’s findings (hadi & closs 2015). researchers used the member checking to support the confirmability of the study’s findings. a summary of the field notes taken during data collection was shared with the participants to confirm if accurate representation of the experiences was captured. in addition, audio-recorded interviews were transcribed by an independent transcriber. furthermore, the researchers compared the filed notes and transcripts from the independent transcriber to verify data accuracy. verbatim quotes of participants’ accounts of their experiences of the influence of stroke on their family’s functioning are incorporated to ensure credibility. these processes were conducted to verify the accurate representation of the participants’ experiences. however, the findings are contextual and may not necessarily be applicable to other contexts. findings four themes emerged from the analysis. themes are as follow: (1) reduced interactions with family members because of communication barriers, (2) the influence of stroke on family relationships, (3) emotional engagement in caring for a family member with a stroke and (4) financial implications of stroke on family functioning. each theme is discussed and supported with a verbatim quotation of the participant’s experiences. a discussion of the findings in the light of literature is presented. reduced interactions with family members because of communication barriers a total of 80% of the participants reported that they struggle to communicate with the family member who experienced a stroke because of speech problems. as a result, some participants reported that because of communication barriers, stroke survivors would often withdraw from interacting with other family members: ‘my mother used to be a talkative person. however, after the stroke she tends to withdraw herself from interacting with people.’ (p1, female, 42 years old) ‘there is not much that we do now because she likes her space and does not engage much with me. this worries me sometimes because there are times when i miss talking to her or sharing something together.’ (p4, male, 48 years old) when they cannot attain the goal of communication, some stroke survivors would become easily frustrated, especially when they are not understood. a common concern shared by the family members was the imbalance of emotions expressed by stroke survivors, such as being agitated and easily irritated. ‘our big challenge with him is communication. he has a very short temper. i try to take my grandchildren away during weekends to visit my sister so they may not interact with him.’ (p2, female, 52 years old) ‘my son does not talk much; however, i can see that he is bothered about his mother’s condition.’ (p4, male, 48 years old) the influence of stroke on family relationships this study found that family relationships transform post-stroke incident. participants particularly described how stroke influenced the quality time and also affected relationships in different levels, these include relationships with children, spouses and with extended family members. family quality time refers to the time family members spend together during mealtimes, watching a television programme, playing games as a family or engaging in any interactive activities. participants mentioned that post-stroke, families no longer spent time together or enjoyed quality time as they did prior to the stroke. ‘we used to do many things together, such as watching television programmes that we all identified with; we also had games and we would cook sunday “kos” after church.’ (p8, male, 51 years old) ‘[…m]y husband isolates himself and does not want to engage in activities that we used to do as a family.’ (p5, female, 59 years old) relationships with children post-stroke a total of 50% participants in this study were married to stroke survivors and had children with them. participants alluded to the tension they observed between their children’s and partners’ relationship post-stroke: ‘his interaction with our children was reduced after the stroke. he became hard on them and they did not understand him. he got along with them more than i did before he had a stroke.’ (p5, female, 59 years old) furthermore, participants observed that parents become harsh to their children when they are not understood, straining the child–parent relationship. in addition, participants shared that in some instances stroke survivors felt inadequate as parents as they could no longer fulfil their parental responsibilities and roles as they did prior to the stroke incident. one participant reported the following: ‘she spent more time with children than me because i had two jobs. she was very active, and they played indoor games, such as cards, and now that she has stroke, she is no longer interacting with them the same way. she used to also monitor their school performances. as a result, our lastborn failed because grade 12 because i cannot do everything in this house.’ (p8, male, 51 years old) influence of stroke on marital or partner relationships spousal participants indicated that their relationships with their spouses changed post-stroke, reporting a decrease in intimacy and quality time spent together as married couples. as a result of the stroke impairments, some spouses expressed that their sexual lives completely changed post-stroke as their partners could not satisfy their sexual needs: ‘there is no intimacy or quality time that we spend as a married people… all i do is to take care of her.’ (p8, male, 51 years old) ‘oh well, you know a man has needs. and those needs can only be fulfilled by their wives. so in my wife’s situation, i cannot expect her to meet my sexual needs.’ (p8, male, 51 years old) in addition, some female spouses mentioned that their male spouses developed lack of self-confidence as a result of not being able to fulfil some roles. the latter had a negative influence of the marital relationships: ‘i also think he sees himself as useless because he used to work but now he is unable to do so. and that affects his emotions because he is always sad.’ (p5, female, 59 years old) extended family members some participants mentioned that family members not residing with the stroke survivor do not visit as frequently as they used to. therefore, the influence of stroke on family relationships differs. findings indicated that some family members distanced themselves from the stroke survivor, while others were more supportive and concerned about the stroke survivor and how the immediate family members were coping. however, the reasons for participants’ observations were unclear: ‘his relationship with his family has changed a lot. some are not visiting us; some would seldom call to check his condition. his parents passed away and i rely on my mother and my daughter.’ (p6, female, 44 years old) moreover, another factor that affected relationships was the misconception of the cause of stroke. a spouse of a stroke survivor revealed that she was called names and blamed for the occurrence of the stroke by extended family members. this confirms that some family members do not perceive the stroke as a medical condition. such perceptions display lack of knowledge about the occurrence of stroke: ‘[… r]egarding his family, his older sister used to blame me for my husband’s condition. she would come to our house to utter profanities saying that i am the reason for the stroke.’ (p6, female, 44 years old) however, some participants observed that their family’s relationships and attitudes towards the stroke survivor remained the same as it was before the stroke. some participants mentioned that their families developed a supporting net and supported the family member who experienced a stroke: ‘as a family, we supported him and made him feel he is still part of us despite his condition.’ (p2, female, 52 years old) ‘now my husband has received so much support and my siblings are treating him the same way that they treated him prior to the stroke….’ (p6, female, 44 years old) some participants expressed that the stroke incident brought them closer to their partners as they spent more time together than prior to stroke. in this regard, they shared the following experiences: ‘i became close to my wife and very much attentive to the things that must be done as i did before stroke.’ (p4, male, 48 years old) ‘[…i]t draws us closer together and now we are spending a lot of time together. i used to visit my friends over weekends and drink. but now i know i must be here to keep her company.’ (p7, male, 37 years old) emotional engagement in caring for a family member with a stroke preparing and adjusting the family environment are among other physical measures that may be taken by families to suit the condition of the stroke survivor. this study found that emotional engagement is another aspect that is influenced by stroke. participants reiterated how emotionally exhausting it is for them care for their family member who experienced a stroke: ‘it gets really difficult at times and i tend to feel very emotionally drained….’ (p5, female, 59 years old) ‘it gets very painful sometimes. i thought that as a parent i would be resting now and that he would be the one taking care of me, not the other way around.’ (p2, female, 52 years old) moreover, all the participants expressed that caring for the person with a stroke resulted in psychological trauma because of the constant fear of the unknown. their fears were mostly related to the sudden or unexpected loss of their family member to stroke. in this regard, a participant shared the following sentiment: ‘i have my days where i worry about what will happen if she were to pass on. i try to be strong for her but sometimes i cannot hold it to myself.’ (p4, male, 48 years old) financial implications of stroke on family functioning the majority of participants echoed their inability to maintain financial stability post-stroke. some participants expressed that they had to resign or quit their jobs as there was no one else to care for the stroke survivor: ‘i used to work but now i have to stop and to take care of him. we also have a small business where i sell sweets, chips and small things but it is difficult to run that because when he is not feeling well i must close and take him to the clinic or get an ambulance to take him to the hospital.’ (p3, female, 52 years old) small families, especially those consisting of both parents and children, experienced financial setbacks and difficulties because of enforced caregiving responsibilities: ‘i am the only person working here. i have to pay for everything, and we need to have money that is available because sometimes she gets sick and i must be able to pay for transport costs because ambulances take time when we phone them. i have to spend more money on fresh vegetables because she likes them. my son accepted that he cannot have everything he wants because his mother is not well.’ (p7, male, 37 years old) participants also shared that during emergencies they had to hire transport as government ambulances would sometimes be delayed in arriving. this compounded their financial burdens. accordingly, they also struggled to afford a balanced diet for the family member with a stroke, which is essential for a successful recovery: ‘my family does not afford the correct food for her because i am the only one who has a job and i have to pay for other expenses. my son just finished school and i do not have money to pay him to continue his studies. that is how bad our finances are….’ (p4, male, 48 years old) however, some families established income-generating strategies that included running small businesses, which they found challenging to operate because of their circumstances: ‘[…h]e had a job before the stroke. after his stroke, we lost income, and i had to start a business to support the family. however, i cannot run it well because i must make time to care for him. it gets tiresome to balance these demanding tasks.’ (p5, female, 59 years old) factors that resulted in financial difficulties included time devoted to caregiving demands and exhaustion and burnout thereafter. discussion the discussion of this article is presented in context of the mcmaster’s modules of family functioning. mcmaster’s modules propose six dimensions: problem-solving, communication, roles, affective responsiveness, affective involvement and behaviour control as described by miller et al. (2000) that can be used to study the family functioning. the findings of this study established that stroke not only affects the life of the stroke survivor but also affects the lives of family members, thus influencing the overall functioning of the family. caring for a person who has experienced a stroke is a demanding task. this was confirmed by kumar et al. (2016) who found that life within the family changes post-stroke as family members reorganise their lives to accommodate the stroke survivor. these findings coincide with studies by guo and liu (2015), gillespie and campbell (2011) and lutz et al. (2011) who in their research confirmed the significant impact of stroke on the normal functioning patterns of families. based on mcmaster’s model of family functioning, communication is the second dimension that strengthens family functioning. this study found that communication between the stroke survivor and family members was reduced because of the communication barriers. wray and clarke (2017:11) explained that communication within the family sometimes became a ‘source of emotional distress, triggering feelings of grief, loss and sadness’. correspondingly, participants reported that stroke survivors frequently disassociated themselves from engaging with family members because of the communication barriers. speech impairments following a stroke means that stroke survivors generally struggle to communicate fluently (vogel, maruff & morgan 2010), exacerbating their frustrations even further as they tend to feel judged and inadequate (winstein et al. 2016). as a result of the communication difficulties, stroke survivors often find themselves protecting their self-identities that are mostly questioned when they struggle to communicate clearly (wray & clarke 2017). participants mentioned that the communication barriers experienced by stroke survivors caused frustration and anger, especially when they were not understood. a chief concern amongst the participants was the reduced interactions. thus, maintaining flawless communication within families was a challenge as stroke survivors were reported to be easily agitated towards other family members. this finding is supported by wray, clarke and forster (2019) who affirmed that stroke has a significant impact on the family’s communication patterns. child–parent relationship is another aspect associated with roles – the third dimension of family functioning that was found to be affected by stroke within the family. participants reported a deterioration in the relationships between stroke survivors and their children post-stroke. this finding is in accordance with harris and prvu bettger (2018) who also found that stroke has a negative impact on the child–parent relationship, respectively. this research reveals that parents struggle to maintain healthy relationships with their children post-stroke. this is because of physical limitations and other stroke-related impairments. furthermore, participants reported that parental roles and responsibilities are heavily jeopardised by the occurrence of stroke in many ways. as such, the lack of support and parental interaction is reported to have psychological effects that result in poor school performance and social interactions. kitzmüller et al. (2012) revealed that children with parents who suffered a stroke have concentration problems in schools and this affects their educational outcomes. in addition, corresponding with a study by bucki, spitz and baumann (2019), this study found that couples often experience changes in their relationships post-stroke because of rapid changes associated with caregiving and nurturing roles. the latter is associated with the first, fourth and fifth dimensions – problem-solving, affective responsiveness and affective involvement, respectively. according to mcmaster’s model, problem-solving and affective responsiveness is based on the family’s ability to address present challenges in a constructive manner (miller et al. 2000). participants reported that they experienced emotional disconnection with their partners as communication was not as flawless as it was pre-stroke. communication barriers after stroke were identified as key factors limiting stroke survivors’ engagement with their partners. this finding is in accordance with kitzmüller et al. (2012:8) who also found that the ‘lack of communication because of aphasia caused emotional problems, misunderstandings and feelings of loneliness within the couples’. furthermore, participants also reported that their partners who experienced a stroke tended to isolate and exclude themselves from family activities. consequently, their self-isolation resulted in emotional disconnection and a decrease in family quality time. kitzmüller et al. (2012) found that stroke affects spousal relationships negatively as one spouse usually assumes multiple caregiving roles, resulting in the overburden of responsibilities. a further finding of this study was that intimacy between partners may be disrupted as one spouse may be struggling to function optimally. this finding is supported by gillespie and campbell (2011) who found that spousal relationships may be faced with challenges, especially when it comes to intimacy. this study also found that because of the sudden occurrence of stroke, some family members developed misconceptions about the cause of the stroke resulting in conflict. this highlighted another aspect of family functioning associated with behaviour control – the sixth dimension of family functioning – interprets the interpersonal behaviour within the family system. according to miller et al. (2000), some family members may develop misunderstandings during the process of re-defining the family’s functional patterns. in such cases, spouses were often blamed for the stroke of their loved one. accordingly, wegner and rhoda (2015) reported that factors such as religious beliefs, social norms and traditions contribute to the perceptions and understandings of diseases, including stroke. this, therefore, does not only show misconceptions of stroke but also reveals a lack of education about diseases in some contexts. it was further established that the burden of stroke does not only affect children and spouses but the whole family system is impacted. the research promulgates that relationships within the family system may be affected in one of two ways. on the one hand, the caregiving responsibilities may place a lot of strain on family relationships as family members put their lives on hold to assume new caregiving responsibilities. in accordance with mcmaster’s model, this is linked with roles – the third dimension of family functioning – which ensures the fulfilment of essential roles for the day-to-day activities of the family system (miller et al. 2000). this finding is corroborated by mishra, mishra and gajjar (2016) who reported that families of stroke survivors may experience greater caregiving burden because of their altered roles and responsibilities, especially when they are not well organised. this in turn may give rise to family dysfunction (kitzmüller et al. 2012). on the other hand, some participants reported a positive experience in relation to the burden of stroke. they stipulated that their families spent more time together than they did prior to the stroke. others remarked that they integrated the stroke survivor in their family processes and thereby refrained from discriminating against them because of their health conditions. these findings resonate with that of simeone et al. (2015) that in some instances some families developed greater affection through the support system offered to the stroke survivor, which in turn strengthened family relationships. this is confirmed by mohammadi et al. (2017) who stated that functional families foster healthy environments for stroke survivors to communicate freely about problems and fears and thereby provide better support to their families. these authors assert that the latter creates a positive environment that facilitates the recovery process (mohammadi et al. 2017). in the light of family systems theory, some families have high responsiveness towards helping and empowering members during adversities. despite the family’s ability to establish a stroke support system during adversities, this study along with that of torregosa et al. (2018) found that the long-term trajectory of stroke may significantly change functional patterns within the family and compromise its ability to care for other vulnerable members. this study and gillespie and campbell (2011) and owolabi et al. (2015) found amongst other factors that mostly impair family functioning include the cost of caring for the stroke survivors. gillespie and campbell (2011) in their study further reveal that caring for a person who experienced a stroke requires financial means and as such families in low socioeconomic statuses may experience financial strains. a study by rhoda (2014) confirmed that the general population residing in the peri-urban parts of the western cape, south africa experience financial strains because of unemployment amongst other factors. in this study, two of the eight participants were employed on contractual bases, while the remaining six were unemployed. limitations of the study findings discussed in this study described the experiences of families of stroke survivors from a low socio-economic background. such experiences may differ in other contexts or with other individuals from backgrounds with a different socio-economic status. in addition, having a diverse study sample might have represented a varied demographic south african profile. in addition, the sample size of this study may also be a limitation. therefore, the influence of stroke on family functioning can be contextually interpreted. conclusion the focus of this article was on family functioning after a family member has experienced a stroke. the perspectives of family members revealed that stroke becomes a burden to the family and has a significant impact on their daily functioning. to deal with their new reality, families had to implement changes and adopt new functional approaches to accommodate their family member who experienced a stroke. it was established that stroke negatively impacts six dimensions of family functioning. these are: (1) problem-solving, (2) communication, (3) roles, (4) affective responsiveness, (5) affective involvement and (6) behaviour control. despite negative reports, some participants indicated spending more time together as a family post-stroke and explored ways of integrating the stroke survivor in their family processes. misunderstandings regarding stroke also surfaced, creating disorder within some families as immediate and extended family members tried to find closure. another aspect that affects the functioning of stroke survivors and their families includes limited financial and essential resources not only for the stroke survivors but also for other family members that are affected. this highlights the importance of research to not only examine the impact of stroke on family members who experienced a stroke and those who assume caregiving roles but to also consider the perceptions and experiences of immediate and extended family members as well. this will shed much needed light on the neglected research area of the nature and influence of stroke on family members. recommendations through this study, it became clear that there is a dearth of studies that have specifically assessed the areas of family functioning impacted by stroke. recommendations derived from the findings of this study include financial relief of stroke survivors and their families. it was also evident that families of stroke survivors have limited knowledge about stroke. this is an area that requires attention as it can assist families of stroke survivors to understand stroke better. lastly, research that considers the influence of stroke on the broader family is needed to plan appropriate interventions to assist families of stroke survivors to establish and maintain a conducive family environment during the process of caring for the stroke survivors. acknowledgements we would like to extend our humble gratitude to the research participants for taking part in this research. we appreciate your shared experiences and honestly. their efforts do not go unnoticed. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions family functioning and stroke originates from a.j.r., the research interest. this research study was led by s.g. data collection, analysis and discussion of the findings were conducted by s.g. c.j.e. and a.j.r. provided critical reading and made suggestions, comments and correction throughout this project. lastly, c.j.e. and a.j.r. was responsible for editing, aligning the content and ensuring that this paper makes a valuable academic contribution to the existing knowledge. funding information this study was funded by the national research fund (nrf) south africa. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the author. references ahn, s.n. & hwang, s., 2018, ‘an investigation of factors influencing the participation of stroke survivors in 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stroke survivor’s health-related quality of life after stroke are there health-related challenges that have been brought about by stroke in the survivor’s life? how would you describe the health status of the stroke survivor after the stroke? how is the survivor affected by stroke? if there are physical and mental implications of stroke for the survivor’s life, what do you do then as a caregiver to ensure a stable sense of well-being for the survivor? as part of ensuring the survivor’s good health state, what would you say works and does not work? would you say that the identity of the survivor has been impacted by the incident of stroke? would you say that the survivor’s self-concept is affected by stroke? survivor’s interfamily relationships (with children if there are any, parents, siblings and extended family members) functioning let us talk about the impact of stroke on family relationships, tell me about the relationships the survivor has and had before stroke with family members do you think that stroke has impacted on relationships within the family? as a family have you managed to preserve the nature of relationships within your family? what are your family members doing to ensure that the stroke survivor is integrated within the family processes? tell me about the attitudes of your family members towards the survivor as a person living with stroke do you notice any change in the relationships that the survivor has with other family members? besides the people living with the stroke survivor, how involved are other family members in the life of the survivor? is there something that you would like to share that i did not ask on the impact of stroke on familial relationships? the impact of stroke on marital relationships (applicable to married or cohabitating participants) can you please reflect on the nature of the relationship you had with the stroke survivor prior to the stroke event? has that relationship changed in some way because of the event of stroke? do you think that your marital relationship is still healthy? can you briefly comment on the resilience that your marital relationship has displayed during after stroke? are there aspects of your relationship that has been affected by the incident of stroke? the impact of stroke on family members stroke is a traumatic medical incident. are there some things in particular that you and your family members do to deal with it? who would you say is mostly implicated by stroke in your family? how do you think the lives of those implicated by stroke have changed? are there things that the individuals or you are doing to ensure that they cope with stroke? the survivor’s post stroke social activities were there social activities that the survivor was involved in before stroke? is the survivor still active or involved in any of these social activities? if not, do you think that impacts or influences how the stroke survivor views themselves in any form? would you now say after 6 months the survivor has recovered and is showing interest on being involved socially? what is the attitude of community members towards the survivor? finally, do you think being active or involved in social activities would or has a positive impact on the recovering process of the survivor? family functioning during stroke family functioning refers to how the family operates and support each other. how would you say your family functioning is influenced by stroke? what adjustments did the family have to make to cope with the experiences of having to live with a person that had a stroke? are the family finances the only aspect that is influenced by stroke? were there activities that you used to do as a family? if so, are those still done now that there is an individual that has a stroke? let us talk about decision making processes. how does the family manage such processes now that there has been stroke? i know that everyone experiences stroke differently. how would you describe the experience of other family members? what areas of functionality in your family are most influenced or impacted by stroke? what has your family done to deal with some of the unexpected changes that may have been brought about by the event of stroke? appendix 2 table 1-a2: demographic information of the participants abstract introduction research methods and design results conclusion acknowledgements references about the author(s) tawanda makuyana department of tourism and integrated communication, faculty of human sciences, vaal university of technology, vanderbijlpark, south africa kaitano dube department of tourism and integrated communication, faculty of human sciences, vaal university of technology, vanderbijlpark, south africa citation makuyana, t. & dube, k., 2024, ‘mapping disability and climate change knowledge base in scopus using bibliometric analysis’, african journal of disability 13(0), a1339. https://doi.org/10.4102/ajod.v13i0.1339 original research mapping disability and climate change knowledge base in scopus using bibliometric analysis tawanda makuyana, kaitano dube received: 18 oct. 2023; accepted: 21 feb. 2024; published: 22 mar. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: climate change and disability are rarely addressed by academic scholars within the spectrum of disabilities and as a single field of study. however, the intersectionality of disability exacerbates the vulnerability of people with disabilities to climate change as climate change frameworks in the global north and south continue excluding them. objectives: this study aims to map the research-based knowledge housed in scopus on disability and climate change. at the same time, it provides insights into innovative (novelty) ways of thinking and proposes a futuristic research agenda. method: a bibliometric analysis was conducted on scopus-indexed articles using vosviewer to map co-occurrences of keywords and co-authorship, and a manual thematic-scoping review augmented the data analysis. results: the disability and climate change debate as a joint study evolved from concern among health practitioners to human rights and social inclusion. conclusion: in conclusion, there is a skewness towards mental health and medical sociology lens, while other sub-groups of persons with disabilities are yet to be engaged in co-creating disability-inclusive climate change knowledge. contribution: thematic areas emerged as gaps that future studies embed principles enshrined in the united nations convention for the rights of persons with disabilities and the sustainable development goals. keywords: disability; climate change; persons with disabilities; inclusive climate change framework; extreme weather events. introduction the disability movement and scholarly debate on disability emerged in the global north in the 1900s (ben-moshe 2020; brune 2019). by then, the narrative seeks inclusion and alleviation of ‘othering’ attitudes and societal practices using phrases like the liberation of the person with disabilities (ben-moshe 2020). the medical and medical sociology perspectives on disability are prevalent among organisations like hospitals, rehabilitation, and care centres (meyers, 2022). with time, disability evolved into human rights advocacy using legislative tools like anti-discriminatory disability laws like the americans with disabilities act of 1990 in the united states of america. later, the united nations convention for the rights of persons with disabilities of 2006 (uncrpd) (united nations, 2006) combined all perspectives, including the social lens (guffey & williamson 2020). however, this never claimed to be a panacea to the vulnerability of persons with disabilities, but a complementary initiative towards providing principles and/or guidelines for societal cohesion and the need to contextualise disability in communities, environmental settings, socio-economic frameworks and research. while states are translating uncrpd into domestic legislative frameworks (nzo et al., 2023), disability and climate change are still not commonly found in single-joint debate, even on built-environments practices and academic fraternity. this results in a scarcity of scientific literature that informs policy and practices that embed disability-inclusive climate change resilience (bell, tabe & bell 2020). on the one hand, organisational-based projects and reports like those by fong (2022) reflect disability and climate change as separate discussions. it implies that even in organisational reports, climate change and disability are rarely embedded in transformative approaches. therefore, in single studies, socio-economic inclusion within the organisation-based frameworks that respond to global warming, extreme weather events and health hardly includes or involves persons with disabilities (kett et al., 2021). on the other hand, organisations for persons with disabilities (opds) are advocating for inclusive disaster-management frameworks (shakespeare et al., 2021) and the impacts of climate change (atwoli, muhia & merali 2022). however, these realities implicate and worsen the vulnerability of persons with visible and hidden disabilities. the intergovernmental panel on climate change (ipcc 2021) explains climate change as a process that influences the transformation of the climate observed by varying mean and variability of weather patterns over a long period, typically decades or longer. it implies that unless disability and climate change foster joint narratives, compounded vulnerability among persons with disabilities can be worse because of climate change-induced socio-economic costs (frame et al. 2020). ‘persons with disabilities include those with long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’ (united nations, 2006). therefore, disability is the complex interaction between the ways that disability is constructed (individual and social constructivism), experienced, the interplay between individual interpretation and shared understanding, the private versus social self, and the politics of impairment versus socio-environmental disablement (olsen & pilson, 2022). the study is motivated to assess how scientific research has delved into disability and climate change in response to interrelated sustainable development goals (sdgs) and the uncrpd. the uncrpd and sdgs came into existence to guide the global community challenges for research-based knowledge to inform and facilitate alleviating the impacts through policy and practice. hence, the present study can contribute to the research agenda to augment existing geospatial depth and dimensions covered in disability and climate change knowledge co-creation. ultimately, it provides insights into equitable coverage of disability inclusion within climate change conversations. understanding the available coverage of disability and climate change as a joint field of study (progress and gaps) contributes to shedding light on multi-dimensions, layers, trends, concerns and research constituents (donthu et al. 2021). it, therefore, furthers the debate on and for novelty knowledge, practice and research-based initiatives on disability and climate change as a joint social field (bell et al. 2020; dietz, shwom & whitley 2020). it implies that the present bibliometric study aims to be a science mapping research using co-word analysis and co-authorship analysis on disability and climate change as a joint field of study. vosviewer-visualisation presented the data from the international research platforms indexed by the scopus database because it can handle extensive scientific data (donthu et al. 2021). therefore, a bibliometric analysis using scopus enables the study to uncover a one-stop overview while identifying knowledge gaps and research dimensions to propose a research agenda on disability and climate change themes (donthu et al. 2021). research methods and design approach the bibliometric analysis was a triangulated systematic review. it, therefore, followed shen and lai’s (2022) view that a systematic quantitative approach fosters better objective coverage of disability and climate change as a joint field of study compared to traditional pure qualitative approaches. according to pickering and byrne (2014), the systematic quantitative review enables mapping the knowledge boundaries and identifying research gaps in a research area. in this instance, the systematic quantitative review adopted a five-step approach proposed by mascarenhas et al. (2018) and pickering and byrne (2014), as illustrated in figure 1. figure 1: five-step process used for this study. figure 1 illustrates the steps taken in the present study, as further explained in the subsequent sections. bibliometric procedure the study implements the steps in identifying and screening data from scopus, as illustrated in figure 1. the authors defined the aim of science mapping research on co-word analysis and co-authorship analysis on disability and climate change as a joint field of study. the study would uncover themes in keywords, titles and abstracts to enrich the past, present and future analysis by establishing a delimitation from 2000 to 2022, which marked step 1 for the bibliometric study. the bibliometric structure that shows networks in the research constituents contributes to the intellectual structure founded upon clusters of pertinent themes in the disability and climate change field. step 2 was executed by triangulating co-citation analysis, bibliometric corpus and co-word analysis techniques for the present study. step 3 comprised the data collection for the bibliometric analysis explained as augmented by the preferred reporting items for systematic reviews and meta-analyses (primsa)-scoping review illustrated in figure 1. data collection the co-authors of the present study have complementary competencies in that the first author has disability expertise, and the latter is a climate change expert. the authors brainstormed terms in this study and identified disab* and climate change as the primary search terms. in addition, the scopus database was selected as the data source because: (1) it indexes research conducted in the global north and south. (2) it is one of the largest international databases containing comprehensive research on climate change and disability fields (sánchez et al., 2017). it is, therefore, relevant to utilise scopus as a data source. the formulation of research questions established step 1 in data generation. the research questions include the following: which co-authorship and co-words (keywords, written content or words) exist within climate change and disability as joint fields of study in the scopus database? which are the most influential publications on the sub-population groups among persons with disabilities covered within disability and climate change research in scopus? which foundational, present, or periodic themes (socio-economic issues) flagged in the uncrpd of 2006, and sdgs of 2015 are current in academic debates? which existing and/or future relationships among topics, angles or dimensions were raised and documented from the disability and climate change lens as a joint field of study? disab* and climate and change were the primary keywords established for an electronic search in the database scopus only (step 2). it, therefore, implies that the search in the scopus database involved screening using articles (literature), titles, abstracts and keywords. while searching, literature identification and screening ensure the quality of the review using the criteria presented in table 1 (step 3). in step 3, as of july 2023, searching for research work in english within scopus identified 581 documents. table 1: inclusion and exclusion in data extraction from the scopus database. the time span for the study was from 2000 to 2022 (more than two decades). it was considered the delimitation period for the search to have sufficient research on climate change and disability as a joint field. the first electronic search produced 581 results. after removing 190 documents by filtering using the inclusion and exclusion criteria in table 1, the study selected 391 documents only. after reading 391 abstracts, 120 were found to be duplicated documents. to ensure that precise, comprehensive knowledge about climate change and disability is understood, documents that mentioned search terms, while not closely linked to the research purpose, were excluded. these amounted to 120 articles with no available full abstracts, 56 had no full texts on open access, while 99 did not focus on disability and climate change in a single study. only 116 documents had available abstracts. reading the 116 abstracts ensures their appropriateness to the selection criteria. another search in scopus was conducted by looking through the reference lists of selected documents to provide essential contributions. after the screening process, 116 papers were eligible for literature analysis. based on primsa for scoping reviews (scr) suggested by tricco et al. (2018), which is an extension of the work of page et al. (2020), a flow chart in figure 2 lists the selection criteria, the number of documents screened, included and excluded. figure 2: illustration of the steps in identifying and screening data gathered from scopus. adopted in parts from page et al. (2020) and tricco et al. (2018): step 4: running the bibliometric analysis and reporting of the findings followed the electronic search in scopus generated data from 116 documents, single studies on disability and climate change. the data were exported in csv file format for bibliometric analysis, using two bibliometric indicators: (1) co-authorship and (2) co-words within climate change and disability as joint fields of study in the scopus database. these can provide insights into the most influential publications on the sub-population groups among persons with disabilities covered within disability and climate change research in scopus. this can enable the study to establish foundational, present or periodic themes (socio-economic issues) flagged in the uncrpd of 2006, and sdgs of 2015 are present in academic debates. such a review would uncover existing and/or future relationships among topics, angles or dimensions raised and documented from the disability and climate change lens as a joint field of study. the researchers uploaded the file in csv format into the vosviewer software version 1.6.5 (step 4). vosviewer is an effective research tool for the enrichment toolbox (donthu et al. 2021) and nurture validation for systematic literature review because it can construct and view bibliometric maps and identify term clusters and their reference network summaries (cavalcante, coelho & bairrada 2021). the researchers present the findings in the following section. ethical considerations ethical clearance to conduct this study was obtained from the independent institute of education, iie ethics committee (reference: r.00092 [rec]). results the state of research on disability and climate change in scopus the findings reflect a clear understanding of the coverage and changes documented by research indexed in scopus on disability and climate change for the past 22 years; the researchers reviewed documents put into two periods, namely preand during the covid-19 pandemic eras. only 116 documents that focused on disability and climate change are in scopus. however, based on figure 3, period 1 (2000–2019), the yield of research publications could be much higher. one scientific publication was there in 2000 and 2001. slow growth with ups and downs from a minimum of 1 to a maximum of 4 per year between 2000 and 2008, and according to figure 3, the period spanning 2009–2012 showed improvements in output from 4 to 13 (documents) compared to previous years, followed by a decline in 2013 to 10 documents. the year 2014 showed 16 published documents, and 2015 showed a drop to 13. a positive change in scientific studies on climate change and disability rose from 18 in 2016 to a climax of 56 documents by 2021. in 2022, a sharp decline in the research output reflects 38 publications only. notably, full-text reading uncovered the fact that early research focused on explaining the vulnerability and existence of discrimination against disability in climate change legislative frameworks (period 1). within the same period, the narrative slowly evolved to consider socio-economic dimensions and specific population groups, like mental health among people with disabilities, from a health professional lens. figure 3: document per year (2000–2022). the findings indicated that in period 2 (2020–2022), the health pandemic did not disrupt the growth of research in disability and climate change. this is evident in the increase in publications to 47 in 2020. in 2021, the publications increased to 56, which marked the peak because, in 2022, there was a decline to 38. a full-text reading of the documents uncovered the fact that research conducted between 2020 and 2022 incorporated the self-representation of persons with disabilities, as encouraged by uncrpd, to complement the narrative with experts’ perspectives (professionals) only. in addition, in period 2, research in the global south emerged with contexts that share some differences in disability and climate change debates in the global north. such views incorporate challenges faced by persons with disabilities, and solutions like involving organisations for people with disabilities can enable the co-creation of measures to alleviate challenges such as extreme weather events leading to flooding. however, a common aspect in global north and south is disability, and climate change has not yet covered all spectrums of disabilities and sub-groups within the population of people with disabilities. prominent journals that published research on disability and climate change the study uncovered the fact that sources of documents found in scopus on disability and climate change began in 2009, only in the lancet (see figure 4). generally, the findings in figure 4 reflect the top five journals indexed in scopus with scientific research on climate change and disability as a joint field of study. one can say that a nexus of disability and climate change as phenomena nurtured novelty in broadening the view that everyone is affected in various ways and scales. research interests grew over time among academic journals, especially after 2014 (see figure 4). figure 4: documents per year by source (top 5 journals on disability and climate change). in addition, the findings reflected in figure 4 present only the top five journals indexed in scopus using document count in relationship to the years set as the delimitation of the study. among the top five journals, the lancet published more on climate change and disability in 2009 with four articles, and there was a break until 2017, when it had one article. in 2020, the lancet had two articles since 2017. therefore, from 2000 to 2022, the lancet had seven documents on climate change and disability. table 2: ten top-ranked countries with researchers on climate change and disability. furthermore, figure 4 reflects the fact that the international journal of environmental research and public health followed the lancet in 2015 by publishing a consistent number of single documents per year from 2015 until 2019. it issued no work on disability and climate change in 2020 and published two documents in 2021. in 2022, it returned to its usual single document status. according to figure 4, the international journal of environmental research and public health has the same number of documents (seven) as the lancet. figure 4 indicates that the spinal cord series and cases began to publish two scientific research studies on disability and climate change as a joint field in 2019. it then published three in 2020, making it have five research outputs as of 2022. hence, it is ranked third among journals indexed in scopus that have published scientific work on disability and climate change from 2000 to 2022. in addition, the international journal of biometeorology published one document each year, which is in 2018, 2019, 2021 and 2022 (see figure 4), leading it to have four documents on disability and climate change as a single field of study. it then was ranked fourth among journals indexed in scopus, which have published on disability and climate change as single studies. in addition, figure 4 reflects the fact that disability and society began to publish research on disability and climate change in 2016. it maintained its consistent annual amount of one document in 2016, 2018 and 2020, respectively. it established a total of three documents as of 2022. such an overall scientific output positions disability and society as the fifth journal to publish on disability and climate change as a joint field of study indexed in scopus. co-authorship on disability and climate change in scopus within the vosviewer analysis, co-authorship analysis focused on quantifying the frequency with which a specific publication or author publishes (seguí-amortegui et al., 2019). it can provide a means to evaluate the research contribution to intellectual structure within a research constituent of a specific field (cavalcante et al. 2021). in this context, it is on disability and climate change: (1) co-authorship that identifies lead authors and (2) co-word reflects their contribution from health, social, business and management science dimensions within the field of study. with this in mind, the findings reflect 122 authors who co-authored research on climate change and disability in a single study. of the 122 authors, nine top-ranked co-authors with more than one document on climate change and disability in scopus are as follows: marcalee alexander has authored the highest number of records, namely 12. of the 12, six are co-authored with other scholars; nonetheless, all 12 research outputs focused on climate change and people with mental health conditions from a psychiatric professional lens – marcalee alexander, affiliated with the university of alabama school of medicine in the united states of america. zaid chalabi, affiliated with the university college london, united kingdom, has four. in contrast, andy haines, affiliated with the london school of hygiene and tropical medicine in the united kingdom, has three documents they authored. on the one hand, ben. g. armstrong from the world health organization, switzerland, co-authored with other researchers to establish two studies on disability and climate change. fitzpatrick, christopher, mathieu bangert and dirk engels (co-authors) are the latter team of researchers from the world health organization, switzerland, and authored two documents. alison c. rivett, timothy g. harrison, dudley e. shallcross and anwah h. khan affiliated with the university of bristol, united kingdom, and jauyah tuah with the ministry of education, bandar seri begawan, brunei darussalam), and gregor wolbring affiliated with the university of calgary, canada among others have single studies on disability and climate change as co-authors. the findings reflect that the rest of the co-authors (one hundred and three authors) have authored a single document each, respectively. interestingly, there are tendencies for co-authorship within the climate change and disability research community. the extant literature reflects the narrative spearheaded by health practitioners, and opds who later joined the debate towards the end of period 1. few social scientists and business and management researchers joined the academic discussion in period 2. in the latter period, some authors, like alexander (2020b), embedded sdgs and uncrpd perspectives in their research with a legislative-skewed narrative for disability and climate change. others, like stein and stein (2020;2021), analysed the climate change agreements like the one made in paris in period 2. however, in periods 1 and 2, there is no contextualised climate change definition of disability for a better interpretation of disability-inclusive climate change measures. countries of co-authors the findings uncover the fact that eight of the 103 focused on global south countries like china, india and brunei darussalam. in addition, within global south, african countries like zimbabwe and malawi were dealt with by researchers who affiliate with an international organisation whose operations are in selected countries. at the same time, the rest of the co-authors considered global north, which has countries in the united kingdom like britain, the united states of america, europe, switzerland, and south american countries like canada. as nzo et al. (2023) indicated, the findings reflect the geospatial distribution of disability and climate change research as uneven in the global north and south. as nzo et al. (2023) ascertained, the extent of disability inclusion into other life-related phenomena like economic empowerment and climate change is determined and influenced by the level of socio-economic and legislative inclusion and ‘disability politics’ in the global north and south. in addition, ignorance, attitudes, and communication barriers are prevalent among climate change experts on disability and disability inclusion and general societal inclusivity within the states and research communities (makuyana & nzo, 2020) countries and/or territories covered in disability and climate change the results of vosviewer show the connection between documents found in scopus on disability and climate change in a single study and the top 10 countries where the authors focused their research on climate change and disability. generally, in period 1, the global north (the united states of america, the united kingdom and australia, to mention a few) is leading in research on climate change and disability. this can be attributed to their advancement in universal designs to cater to the ageing population, which shares similar needs with persons with disabilities, and enforceable disability acts (makuyana & nzo, 2020) findings indicate that while the end of period 1 reflects the fact that the global south is lagging, countries like bangladesh, burkina faso, madagascar, nigeria, sierra leone and zimbabwe were considered in one study as territories and/or spheres of influence for mphss (lunga et al., 2019). in period 2, mexico and doom island were considered in this climate change and disability discourse by researchers, including ampnir, santoso and maturbongs (2022) and gonzález and alvarado (2019), respectively (see figure 4). figure 4 indicates china and india in the top 10. at the same time, botswana (dintwa, letamo & navaneetham 2019), brazil (menezes et al., 2019) and bangladesh (arman et al., 2019; ahmed et al. 2019) are part of the climate change and disability-related debates that emerged in period 1. the rest of the scientific documented knowledge in scopus focused on the global north. in period 2, ahmed et al. (2021) investigated the effect of extreme weather events on injury, disability, and death in bangladesh. arman, salam shaoli and hossain (2022) looked into mental health and climate change in the same country. thus, morris et al. (2018) looked at disability and climate change from an extreme weather event within the political determinants for persons with disabilities after assessing disaster risk in the aftermath of hurricane maria in puerto rico-brazil. the findings indicate that simpson et al. (2021) collaborated with persons with disabilities to study disaster and emergency preparedness among people with disabilities in mexico. simpson et al. (2021) uncover the unmet needs of persons with disabilities and input on addressing these issues through grassroot coalition building and inclusion. the findings reflect the same urgency as seen in the 2018 ipcc report; however, simpson et al.’s (2021) assertion conveys the perspective of those who have lived through disastrous events in mexico. simpson et al. (2021) indicated the need to promote emergency and disaster preparedness among people with disabilities, achievable through an intersectional, inclusive, equity-based approach to human rights. the results from vosviewer, presented in table 1, indicate the ten top-ranked countries and/or territories with researchers investigating climate change and disability in single studies between 2000 and 2022. the rest of the co-authors’ countries of focus (where research emerged from) for their research on climate change and disability between 2000 and 2022 had less than ten, and the least had one document per country. therefore, geographical distribution is related to how policy-makers and decision-makers in organisations and academic research communities in various geo-political spaces perceive disability. the situation even goes to the extent of legislative support and funding or sponsorship of research on disability and climate change issues. global south, especially africa, has a handful of research because of ignorance of disability inclusion, limited accountability and enforceability of legislative tools that address disability issues (chataika et al. 2019). co-word analysis results on disability and climate change in scopus it is important to note that the first data extraction was conducted from scopus and had an analysis of the results (obtained documents). the study focused on the connection between documents by year, year and source, author and country and/or territory. the researchers conducted the second data generation and co-occurrence analysis using data extracted from scopus in csv format using vosviewer. the second vosviewer enables the establishment of co-occurrences of keywords. the co-occurrence analysis allows for understanding the strengths of links between keywords from the content. the analysis simultaneously evaluates the ranking of the frequency of usage of the keywords in extracted documents (cavalcante et al. 2021). the linkage strength in the network visualisation of the vosviewer shows the size of the bubbles. the thickness of the lines between them reflects a higher frequency of co-occurrence. network visualisation demonstrates the strength of the association between items (cavalcante et al. 2021). therefore, the distance between the bubbles in network visualisation reflects the number of documents with the items used in the electronic search on the database (seguí-amortegui et al., 2019), in this case, scopus. the vosviewer results indicate climate change has 60 occurrences and 452 total link strength. in contrast, disability has 25 occurrences and 176 links. a disabled person has 12 occurrences and 115 total link strength; disabled persons have nine occurrences and 97 total link strength. aged has eight occurrences and 108 total link strength. in comparison, mental health has nine occurrences and 82 total link strengths. the network of all keyword occurrences and link strengths is shown in figure 5. figure 5: mapping of co-occurrence of keywords using network visualisation. the vosviewer results indicate climate change as having a giant bubble; however, it links to all keywords. climate change is a global challenge that diversely affects persons with various disabilities. from the present review, a consensus is that climate change induces and exacerbates vulnerability among people with disabilities. thus, climate change-induced effects like extreme weather events such as floods threaten people with mobility challenges because of, for instance, spinal cord injuries when intending to escape the floods (alexander 2019). on the one hand, humans are second and third largest. the findings indicate that, on the one hand, disability and vulnerability are ranked fourth and fifth. this is because all literature on climate change suggests the vulnerability of persons with disabilities like the ones with spinal cord injuries as they have challenges in mobility (alexander 2020a, 2020b, 2020c) in the global north. on the other hand, the vulnerability of mental health conditions in the global south relates to the effects of climate change, like droughts and cyclones (lunga et al., 2019) (see also figure 5). results of vosviewer’s clustered thematic words. results from vosviewer indicate that the size of the string indicated in green shows interdisciplinary, intradisciplinary, and multi-disciplinary research in the period 2018–2020 related to disability, climate change and vulnerability (see figure 6). figure 6 presents the 802 links, with 2276 total link strength, of climate change to other keywords like disab* (aged included) research as gaining the research community’s interest. the study in yellow indicates terms like adaptive management, climate justice and convention for the rights of persons with disabilities that emerged in research in post-2020, which is skewed to mental health (see figure 6). figure 6: mapping keywords’ link strength. themes and suggestions for disability and climate change research in the future the findings uncovered that, as opposed to period 1, period 2 shows alexander (2019, 2020a) as bringing other layers of concerns about the safety of people with spinal cord injuries amidst extreme weather events induced by climate change like floods and heath pandemics like the covid-19 pandemic. alexander’s (2019, 2020a) concerns share similarities with other aetiology of disability as part of processes to learning experiences of persons with disabilities for future climate change-induced events. the findings uphold maisel et al. (2021) as bringing to the surface the need to bring climate change through inclusive design within the adaptive capacity lens. within the same line of thought, engelman craig and iles (2022) present case studies from different global regions to illustrate how disability is absent when planning climate-related health impacts and disaster responses. engelman et al. (2022b) reveal the role of aid from networks led by people with disabilities in adapting to climate-related health impacts. in addition, suggested (raised questions) areas to help policy-makers and practitioners integrate disability justice into their work. engelman et al. (2022a) opine that the inclusion of people with disabilities, their organisations, and service providers in the co-ownership and co-creation process of developing policies and actions to prevent, enhance, prepare for and respond to climate disasters. the findings reveal that researchers like costello et al. (2009), mörchen et al. (2021), and lasky et al. (2023) produced letters published to express concern if climate change, vulnerability, disability, climate justice and ableism are not perpetuating inequalities (leaving others behind). the trend indicates a call to build an inclusive climate movement by including disability in climate change debates and/or discussions (butler et al. 2022). furthermore, king et al. (2021) propose a teaching and learning guide for disability and climate justice. disability subgroups covered within climate change research in scopus the findings reveal that, towards the end of period 1, alexander et al. (2019) explored climate change and disability from an angle of the educational needs of rehabilitation professionals in line with disaster management and spinal cord injuries. the line of discussion is more about clinical and/or health practitioners presenting an argument for their patients and/or clients. furthermore, in period 2, alexander (2021) considered the nexus of climate change and health from a concern about how people with health conditions like multiple sclerosis, spinal cord injury, visual loss and autism are dealt with by professionals in the climate crisis. one can say that the ones left out of climate change research, including deaf people, are vulnerable to the negative impacts of climate change-induced events. in addition, there is a need to be explicit on how the quality of life of persons with disabilities can be part of the intervention for climate change-induced extreme events (alexander 2021). the findings indicate that sullivan et al. (2022) focused on climate change-induced health effects evident in the health of people with disabilities because there are research gaps in the physiatric literature that must use education. taylor et al. (2022) concur that there is a need for the physiatric literature to fill the research gap on climate change. sullivan et al. (2022) suggested the whole medical education continuum to prepare physiatrists to address the climate-related health effects impacting their patient. in addition, physiatrists and their member organisations should actively advocate for policies that address climate change and the needs of their patients while including people with disabilities in the policy-making process, as supported by the uncrpd of 2006. furthermore, eaton et al. (2022) discussed the need to bring mental health and well-being within climate change to inform future practices (intentions). eaton et al. (2022) took insights from a global south lens of mental health and psychosocial support (mhpss) activities linked to climate change-related emergencies in bangladesh, burkina faso, madagascar, nigeria, sierra leone and zimbabwe. in addition, people with intellectual disabilities and climate change have not been explicitly considered in academic fora (long et al., 2014). therefore, lunga et al. (2019) unravel the need for a relook to bring persons with disabilities into the civil protection decision-making and policy formulation in zimbabwe, an example of a developing country lagging in climate change and disability. incorporation of sdgs and uncrpd in climate change academic debates the researchers familiarised themselves with data by reading each document that was part of the results from an electronic search in scopus. the researchers deduced emerging themes from the reviewed literature as guided issues raised by authors, dimensions of the discourse, subgroups among the persons with disabilities, alignment to uncrpd of 2006 and sdgs of 2015, and countries and/or territories covered within disability and climate change. such analysis enabled the exploration of the latent meaning in the academic debate on disability and climate change. the findings from full-text reading uncovered a contrasting pattern. in period 1, the guiding principles were absent in the sdgs and uncrpd within climate change and disability debates. in period 2, a narrative change was observed compared to the previous period because researchers like alexander (2020b) incorporated the sdgs within the climate change debate as a layer and dimension to enable health equity for persons with disabilities caused by spinal cord injury. furthermore, alexander (2020b) indicated the need to increase the sharing of international knowledge of the challenges of people with spinal cord injury and sicknesses associated with spinal cord injury in developing countries to make necessities available within climate change adaptive and mitigating mechanisms from an informed point of view. furthermore, eriksen et al. (2021) explained reasons and justifications for the importance of understanding the rights of persons with disabilities in the development and rollout of climate-resilience pathways from a uncrpd lens. bell et al. (2020) indicated sgds’ explicit interest in addressing equality and poverty among people with disabilities; however, they propose to obtain insights from disability studies for climate change migration discourse, policy, and processes and practices to incorporate systemic inclusion. the findings present that, while emphasising limitations in climate change policy’s inclusion of persons with disabilities (salkeld, 2016) across the globe, disability rights in international governance on climate change have been acknowledged for international legislative instruments for climate change (jodoin et al. 2021). despite this acknowledgement, there is still a need at individual-country and local-community levels to have disability-inclusive climate change mitigation and adaptive measures that incorporate all subgroups in the disability space. it implies that climate change and disability research (academic), non-academic narrative, and community-based interventions and initiatives should cater to all subgroups like deaf, visually impaired and blind, to mention a few. such a broader coverage is essential to reasonably accommodate the approximately 15% who have a form of disability (makuyana & nzo, 2022). this study uncovered the fact that countries in the global south had given little attention to climate change and disability from health and non-health practitioners, policy-makers and scholars compared with those in the global north. countries develop measures to combat climate change and adapt to its impacts without understanding how their initiatives can be designed and implemented in ways that nurture respect, protect and fulfil the human rights of people with disabilities (jodoin et al. 2021). therefore, jodoin introduced a human rights model of disability that embeds uncrpd for climate governance (jodoin et al. 2021). the model identifies the differential impacts of climate change for persons with disabilities while establishing the principles, obligations and standards critical in developing and using accessible climate mitigation and adaptation policies and programmes (jodoin et al. 2021). this can enable a more inclusive world with disability-inclusive climate solutions that can have resonant outcomes to help the disability sub-population groups contribute to carbon neutrality initiatives to enhance the climate resilience of society (jodoin et al. 2021). the findings uncovered the fact that while acknowledging the inclusion of disability in international frameworks on climate change, stein and stein (2022a; 2022b) considered the paris agreement as overlooking persons with disabilities in climate change mitigation and adaptation efforts as a violation of agreed-upon human rights obligations. their proposition points to a need to incorporate participatory justice that empowers persons with disabilities for climate resilience approaches that are efficacious for, successfully implementable by, and accountable to people with disabilities. king and gregg (2022) share similar views on understanding how physical disabilities relate to perceptions of climate-related risk and adaptations to climate-related events. king and gregg (2022) propose a critical realist model of climate justice that aims to comprehend the nexus between environmental features like disabling factors, risk perception, information seeking, adaptive capacity and resilience to climate change. understanding disabled people’s vulnerability and capacity to adapt to climate change will enable a better understanding of how vulnerable populations cope with climate change and mainstreaming them into climate action and policy. it, therefore, has implications for a need to have joint knowledge co-creation among international frameworks to protect the rights of persons with disabilities, opds, and international organisations that are forming ‘climate-resilient development pathways’ (oxfam, n.d.; gwp & unicef n.d) – supported by scientific findings from the ipcc (ipcc 2018). climate resilience is increasingly recognised as being inherently political (schipper et al., 2020). however, efforts often do not sufficiently engage with context-specific socio-ecological, cultural and political processes, including structural inequalities underlying historically produced vulnerabilities (grasham et al. 2021), like persons with disabilities and ageing people (nzo et al., 2023). it implies that politicised approaches pose barriers to concerted and meaningful change as they increase the chances of concealing the agency of different actors and obfuscating roles and responsibilities (ferguson 2019). therefore, depoliticising climate change can contribute to alleviating some vulnerable and marginalised population groups among persons with disabilities who are left out. it thus implies that climate change experts should incorporate disability into the climate-resilience concept. this is essential because climate resilience, in essence, cuts across sectors and disciplines and is prone to varying interpretations, resulting in differing and sometimes competing definitions (moser, 2019). hence, there is a need to co-create knowledge on climate change that upholds the self-representation of all persons with disabilities while being guided by uncrpd. there are implications that climate change policy and decision makers within the resilience strategising space for pathways for the diversified communities may perpetuate the ‘blanks’ because of the absence of knowledge on all people with disabilities. such a knowledge gap may adversely or negatively affect the interpretation of uncrpd and sdgs to the effect of a continued exclusion among persons with disabilities in climate change mitigation and adaptive measures. in addition, climate resilience legislative tools aimed to build and enable resilience among all diverse people in communities may further exclude some groups among persons with disabilities. therefore, the study suggests collaboration between researchers, policy-makers and implementing agencies to engage vulnerable communities continuously. such engagement can inform and provide insights to facilitate and empower individual decision-making, identification, understanding and communicating risks to all persons with disabilities using communicable means. it, therefore, implies that local contextualised concerns and research evidence-based approaches on disability and climate change can lead to better provision of support and promotion of adaptation in various ways. conclusion the study concludes after a bibliometric review in scopus using keywords like disab* and climate change. the co-word analysis found the words in various disciplines ranging from medical to environmental and social sciences perspectives. co-authorship analysis on disability and climate change as joint fields of study in the scopus established the fact that the global north has more co-authors who contributed to the extant research intelligence compared to the global south. it, therefore, implies uneven coverage of knowledge on disability and climate change in fields such as health, environment, business and/or management and socio-economics, both in the global north and south. global south is lagging, which implies that the geospatial distribution of publications relates to the geo-political-based influence of disability movement. however, compared to the global south, the global north has been leading in pushing the inclusion agenda by generating knowledge to inform climate change legislative tools. interestingly, the mental health (psychiatric) and other psychosocial sub-groups of persons with disabilities received research attention above the rest within disability and climate change research in scopus. it, therefore, implies a need to broaden the scope and balance knowledge co-creation with children, youth, women and ageing among other people with disabilities sub-groups like blind and partially blind people, deaf and hard of hearing people, people of short stature, people with autism, mobility-impaired people and multiple disabilities. based on the findings, the conclusion is that extant literature on disability and climate change indexed in scopus has not yet uncovered the linkage of disability classification within the climate change context. it, therefore, has implications that policy-makers and policy-implementing agents in the climate change space need to establish disability classification from a climate change lens. it can enable easier adoption of disability definitions within climate change guidelines and pathways. therefore, the study indicates themes and gaps emerging from extant literature for future research. consequently, this poses real-life implications for societies’ inclusive climate resilience beyond natural and built environments, attitudes, and communication for effective climate resilience pathways that do not perpetuate ‘othering’ norms. therefore, the authors recommend the multi-disciplinary lens research on disability and climate-change to reduce compounded vulnerabilities and inequities experienced by hard of hearing, deaf, visually impaired people, blind, mobility-impaired people, speech-impaired, and those with multiple disabilities who are not in the literature found in scopus. in conclusion, therefore, it poses implications for the definition of disability adopted by the present study. it lacks climate change context, and the interpretation is subjective to one’s perspective. that is, disability is the complex interaction between the ways that disability is constructed (individual and social constructivism), experienced, the interplay between individual interpretation and shared understanding, the private versus social self, and the politics of impairment versus socio-environmental disablement (olsen & pilson, 2022). the definition of disability has implications for the climate resilience discourse aimed at furthering knowledge co-creation and application as climate resilience pathways that include everyone in the global village. climate-change resilient development is the emerging paradigm within international sustainable development in theory and practice (grasham et al. 2021). so, with limited climate-disability research in the global south, persons with disabilities can continue to be marginalised and left out in climate resilience debates and real-life practice. therefore, the research community in the climate change space should incorporate the uncrpd lens within the climate change discourse. in addition, governments of countries in the global north and south should foster disability-inclusive policies for climate-resilient economies driven by international frameworks. however, the review reflected an absence of disability in international frameworks like the paris agreement (grasham et al. 2021). at the same time, researchers from various countries have different paces in the knowledge generation lens. in contrast, others have made efforts beyond policy formulation. the study provides insights for a future research agenda that can foster the co-creation of disability and climate change knowledge that can help decision-makers, researchers and vulnerable communities. it, therefore, implies multi-stakeholder and transdisciplinary approaches towards collaborative work that link and deliberate research-based programmes designed to enable resilience to climate change-related hazards and risks to every person with disabilities. on the one hand, the study had limitations in only considering one database, scopus. on the other hand, it recommends further studies using other databases while augmenting with empirical studies for all persons with disabilities. acknowledgements competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions t.m. conceptualised the study and conducted the study under the supervision and guidance of k.d. who reviewed and edited the article to bring it to a standard that is worthy of submitting for publication. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability all data were obtained from scopus data base and the study used resources on open access only. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s results, findings, and content. references ahmed, i., ayeb-karlsson, s., van der geest, k., huq, s. & jordan, j.c., 2019, ‘climate change, environmental stress and loss of livelihoods can push people towards illegal activities: a case study from coastal bangladesh’, 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implications and recommendation conclusion acknowledgements references about the author(s) sarah m. manig department of physiotherapy, faculty of community health science, university of the western cape, cape town, south africa liezel ennion department of physiotherapy, faculty of community health science, university of the western cape, cape town, south africa michael rowe school of health and social care, university of lincoln, lincoln, united kingdom luc de witte research group technology for healthcare, centre of expertise health innovation, the hague university of applied sciences, the hague, the netherlands citation manig, s.m., ennion, l., rowe, m. & de witte, l., 2025, ‘frameworks used to evaluate community-based rehabilitation interventions: a scoping review’, african journal of disability 14(0), a1546. https://doi.org/10.4102/ajod.v14i0.1546 review article frameworks used to evaluate community-based rehabilitation interventions: a scoping review sarah m. manig, liezel ennion, michael rowe, luc de witte received: 04 aug. 2024; accepted: 05 may 2025; published: 30 july 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: community-based rehabilitation (cbr) interventions are important for improving the well-being of people with disabilities. however, there is no universally accepted framework for evaluating these interventions, which limits their effectiveness and integration into policy. objectives: to explore theoretical frameworks used in evaluating cbr interventions, assessing their suitability, context-specific applicability and cultural relevance. method: a scoping review methodology was employed to examine the literature. databases searched included pubmed, cinahl, ebscohost and web of science. broad search terms and keywords used were cbr, analytical and/or methodological and/or theoretical and/or conceptual and/or evaluation framework, impact and evaluation. only full-text articles written in english and published between 2000 and 2020 were included. data were analysed using a narrative synthesis method. results: no single framework has been widely recognised as the superior or most effective standard for evaluating cbr interventions. instead, a combination of the cbr matrix and cbr guidelines was frequently used and adapted to be context-specific. conclusion: while cultural relevance and context specificity are recognised as essential to the evaluation process – and measuring outcomes at the individual level is viewed as most appropriate – there remains a need for a certain level of standardisation. contribution: the study highlights the need for context-specific and culturally relevant evaluation frameworks for cbr interventions, including appropriate outcome measures and/or evaluation instruments. keywords: community-based rehabilitation; evaluation; framework; scoping review; theoretical framework; impact assessment; rehabilitation evaluation. introduction rationale community-based rehabilitation (cbr) has been widely adopted as a strategy to enhance the quality of life for people living with disabilities (pwd) by integrating health, education, social inclusion, empowerment and livelihood (blose et al. 2021). the cbr matrix, which outlines these five pillars, provides a robust framework for guiding interventions. however, the application of this matrix in evaluating cbr interventions remains a challenge, as pwd continue to face entrenched issues such as poverty and human rights violations (blose et al. 2021). while the matrix offers a comprehensive approach, its implementation must be flexible enough to adapt to different contexts, as the relative importance of each pillar may vary depending on the specific goals of the intervention and the population served. despite the advancement of the cbr matrix to guide cbr interventions to provide a comprehensive service, pwd remain in a poverty cycle and experience a gross infringement on their human rights (blose et al. 2021). limitations exist in evaluating cbr, as no consensus has been reached on the most appropriate tools or generic outcome measures when evaluating cbr interventions. appropriate evaluation processes allow services to improve by exposing strengths and weaknesses. the world health organization (who) has long defined ‘disability’ as an umbrella term encompassing impairments, activity limitations and participation restrictions (who 2011), which arise from the interaction between a person with a health condition and environmental and personal factors. over a billion people are estimated to live with some form of disability, and the rates of disability continue to increase, partly because of ageing populations and the rising prevalence of chronic health conditions (who 2019). historically, disability has been viewed through a deficit-based lens; however, in 2023, the who adopted the concept of positive health, emphasising well-being as a dynamic ability to adapt and manage life’s challenges (van vliet et al. 2024). this shift significantly impacts the way disability prevalence is understood and counted, as it expands the scope beyond mere impairments to include an individual’s capacity to thrive within their context. community-based rehabilitation aligns well with this framework, as it promotes social inclusion, empowerment and functional ability rather than solely focusing on medical limitations. recognising disability within this broader construct reinforces the need for robust, context-specific cbr methodologies that support both individuals and their communities (mason et al. 2017). in low-middle-income countries (lmics), pwd are often unable to contribute to the household income and are dependent on family members for daily tasks. a lack of independence for pwd has a negative impact on the national economy and health care structures as there is a growing demand for government financial aid and health resources. global rural population has reached 3.4 billion with close to 90% of the world’s rural population living in africa and asia (international labor office 2018). the rural population of the world has grown slowly since 1950 and is expected to reach 3.1 billion by 2050 (international labor office 2018). already, access to health care is very challenging for persons living in rural areas, and a predicted increase in population size will place further strain on existing social services. the global population size is on the increase, and with it, the number of pwd (international labor office 2018). people living with disabilities face various barriers within their communities, particularly those related to accessing medical services, especially in low-income or rural areas. community-based rehabilitation is the most effective approach for improving the well-being of pwd and fostering increased community participation in these settings. however, there is currently no consensus or framework for evaluating the impact of cbr interventions, limiting their uptake into policy (thomas & thomas 1999). accessing medical services is vital for pwd to promote health, prevent deterioration, improve overall function and community participation and strive for the optimal quality of life (who 2010). a consensus evaluation framework can contribute to the effectiveness and sustainability of cbr interventions, ultimately improving the well-being and participation of those living with disabilities, particularly in rural and low-income areas. there is a sense of urgency for the development of research and, more specifically, a framework that stands to evaluate interventions. boyce and ballantyne (2000) argue that evaluating cbr interventions is often not a priority for project leaders but emphasise that cbr cannot be sustained without appropriate evaluation mechanisms to assess its foundational information base. furthermore, they believe that evaluation, if appropriately conducted, can help the development of community programmes. quantifiable evidence is essential for informing policy decisions. without it, there is no objective basis for advocating national or international change at the governmental level. research questions the following research question guided the review: ‘what are the existing frameworks or models that have been used to evaluate cbr interventions?’ and ‘how usable and relevant are these frameworks to the context of cbr?’ objective the objective was to explore theoretical frameworks used in evaluating cbr interventions, assessing their suitability, context-specific applicability and cultural relevance. methods a scoping review was conducted, and the methodology is detailed in the following section. search strategy eligibility criteria inclusion criteria: only full-text publications published between 2000 and 2020 in english were included in the search. all study designs were included. exclusion criteria: grey literature, non-peer reviewed publications. the search terms were used in different combinations using boolean phrases to maintain a broad search and not exclude relevant titles (see table 1): ‘community-based rehabilitation and/or framework and/or impact’ ‘community-based rehabilitation and/or framework and/or evaluation’ ‘community-based rehabilitation and/or evaluation framework and/or impact’ ‘community-based rehabilitation and/or framework and/or efficacy’ ‘community-based rehabilitation and/or conceptual framework and/or impact’ ‘community-based rehabilitation and or theoretical framework and/or impact’ ‘community-based rehabilitation and/or methodological framework and/or impact’. table 1: search terms. information sources the first search commenced on 01 september 2020. the following databases were included in the search: pubmed, ebsco-host, cinahl and web of science (n = 224). study process: after the removal of duplicates (n = 145), the references were imported into microsoft excel to be screened. the following inclusion criteria had to be met for the research to qualify as relevant: titles and abstracts relevant to the research question. intervention of the study falls within the cbr matrix. intervention uses an evaluation model or framework. two reviewers screened the titles for inclusion. data collection process study selection after the initial screening of the titles, 37 articles met the inclusion criteria and were included in the next step. the abstracts of these relevant titles were screened using the inclusion criteria described above. agreement between the reviewers was good (kappa = 0.81). upon further inspections, articles found to be relevant were reviewed in full text by the first author. publications that did not meet the inclusion criteria were excluded. a total of 224 titles were retrieved across all databases in the initial title search. after the removal of duplicate titles, 145 unique titles remained. of these, 37 were deemed relevant to the research question and moved into the second stage in which the abstracts were read for relevance. finally, seven full-text articles were aligned with the research question, met the inclusion criteria and were included in the scoping review (see figure 1). figure 1: literature search and study selection. synthesis methods after the final full-text inclusion, a data extraction form was developed in alignment with the research question. this data extraction form consisted of descriptive elements (see table 2) which included the author, year, title, aim, study design, instruments of data collection, study population, frameworks identified, areas of the cbr matrix the study engaged with and the level (individual, organisational and contextual) at which the intervention was evaluated. the relevant data were extracted from the articles and integrated into the form. table 2: table of study characteristics. initially, the overall data were examined to determine the study aim, design, data collection methods, population and setting. thereafter, the key findings of the sources were collated based on the relevance to the study aim and research question, which included frameworks identified, cbr matrix, and the level at which the study was evaluated (individual, context and/or programme). ethical considerations this scoping review was conducted in accordance with the ethical standards outlined by the university of the western cape’s biomedical research ethics committee. permission to conduct this research was obtained from the biomedical research ethics committee (reference number: bm20/5/31). review findings study characteristics most of the publications used a case study approach to conduct their study in low-income communities in africa and asia (adeoye, seeley & hartley 2011; biggerri & ferrannini 2014; chung et al. 2011; luruli et al. 2016). the remaining publications either represented an online community or a high-income country, such as the united kingdom (scobbie et al. 2013). the case studies were mostly focused on the framework or concept in question and how it interacted with the setting and community. the studies by grandisson et al. (2016) and velema and cornielje (2003) had a broader focus on available literature and creating concepts and suggested frameworks to be used in a cbr context (see table 2). frameworks identified none of the studies identified a single framework applicable to all cbr interventions (table 3). this likely reflects the diverse and context-specific nature of cbr interventions, which necessitate tailored evaluation frameworks. instead, most of the case studies utilised a combination of established white paper literature (such as the cbr matrix and cbr guidelines) and the institution’s own documentation to create a unique, context-specific framework for evaluating the specific programmes under investigation. table 3: results of individual included studies. only one study deviated from this approach, focusing on an existing evaluation method known as the goal setting and action planning (g-ap) framework (scobbie et al. 2013). the g-ap framework is designed to evaluate complex interventions through goal setting and action-planning principles. it employs action plans and coping strategies to achieve outlined goals and overcome anticipated barriers. an intervention’s success is measured by the achievement of these goals. velema and cornielje (2003) advocate for a reflective approach before commencing evaluations. they emphasise the importance of a solid foundation where systematic information is gathered about the individual, services, programme, programme environment and the interrelationships between these elements. their study introduced a sequential question framework designed to stimulate critical thinking and define the evaluation’s purpose before it begins. the delphi study conducted by grandisson et al. (2016) involved 42 experts in cbr to determine the best evaluative practices. the consensus among experts was that the most suitable framework for evaluation would be a combination of the cbr matrix and the guiding principles of cbr. the major pillars of the cbr matrix – health, education, social, livelihood and empowerment – provide a structured framework for evaluations, ensuring they remain context-specific and culturally respectful. implications and recommendation this study reviewed the available literature on frameworks used to evaluate cbr interventions globally over the past 20 years, with the most recent study included published by grandisson et al. in 2016. the seven articles included in this review do not represent the entirety of information on frameworks for cbr evaluation. however, they indicate a limited amount of published scientific literature on the topic. there is a significant need for more research and published articles on evaluating cbr interventions. a notable publication bias exists in this area, potentially excluding valuable information. specifically, many unpublished works, non-english publications and grey literature may provide insights into cbr evaluation frameworks that are not captured in this review. including these sources could offer a more comprehensive understanding and reveal effective frameworks that are not widely recognised. there is no universally applicable framework for evaluating cbr interventions (grandisson et al. 2016; velema & cornielje 2003). however, it is generally agreed that the most suitable framework would be a combination of the cbr matrix and/or cbr guidelines and an approach that ensures context specificity and cultural relevance. community-based rehabilitation is a diverse and holistic practice that operates in various contexts. thus, the approach to monitoring and evaluating cbr interventions must anticipate and accommodate this diversity. the authors agree that tailoring the framework to be context-specific is essential for its relevance and effectiveness. it is also agreed that outcomes are best evaluated at an individual level to measure the intervention’s effectiveness (adeoye, seeley & hartley 2011; biggerri & ferrannini 2014; chung et al. 2011). this is critical in the standardisation of a framework. tailoring the evaluation framework to a specific context or environment allows the use of appropriate outcome measures at an individual level, providing a more precise and accurate evaluation at a programme level. the authors in this review recommend using the major pillars of the cbr matrix (and their subheadings) to guide the format of an evaluation for a cbr intervention. the main categories of the cbr matrix – health, education, social, livelihood and empowerment – provide structure to the direction and area being evaluated. this structure should then be made context specific using programme documents and stakeholder consultations (adeoye, seeley & hartley 2011; biggerri & ferrannini 2014; chung et al. 2011; luruli et al. 2016; mason et al. 2017). limitations although this review attempts to uncover literature on frameworks used to evaluate cbr interventions, several limitations are acknowledged. the date range of published literature was restricted to 2000–2020, excluding research done before or after this period. the search only included english publications, excluding potentially relevant studies from non-english speaking low-income and middle-income countries where cbr is more commonly implemented. only full-text articles published in peer-reviewed journals were included, omitting grey literature that could provide additional insights. conclusion this scoping review did not identify a single framework that experts universally regard as the gold standard. instead, it revealed expert consensus favouring the combined use of theoretical frameworks, such as the cbr matrix and cbr guidelines, to tailor evaluations to be context specific and culturally relevant. while cultural relevance and context specificity are recognised as essential to the evaluation process – and measuring outcomes at the individual level is viewed as most appropriate – there remains a need for a certain level of standardisation. specifically, standardisation of core outcome measures or evaluation instruments would enhance comparability and enable shared learning across different cbr programmes without compromising necessary contextual flexibility. further research is needed to better understand how evaluation frameworks evolve and to identify current instruments or outcome measures that could inform the development of standardised yet adaptable evaluation practices in cbr interventions. acknowledgements i would like to acknowledge my family and friends for their unwavering belief and reassurance. to the patients and people living with disabilities, in both urban and the most rural settings, who have crossed my path, you motivate me ‘to keep on keeping on’. this article is partially based on the author s.m.m.’s dissertation titled ‘a universal framework to evaluate community-based rehabilitation interventions’ towards the degree of doctor of philosophy in the department of physiotherapy, university of the western cape, south africa, 2025 with supervisors professor liezel ennion, professor luc de witte, and professor michael rowe. competing interests the authors reported that they received funding from the south african society of physiotherapy, which may be affected by the research reported in the enclosed publication. the authors have disclosed those interests fully and have implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions s.m.m. wrote the manuscript, and l.e., l.d.w. and m.r. supervised the 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health organization (who), 2011, world report on disability, world health organization, geneva. world health organization (who), 2019, disability and health, viewed october 2020, https://www.who.int/news-room/fact-sheets/detail/disability-and-health abstract introduction conceptual framework research method and design findings and discussion conclusion acknowledgements references about the author(s) nokuthula tinta department of sustainable food systems and development, faculty of natural and agricultural sciences, university of the free state, bloemfontein, south africa unathi kolanisi department of consumer sciences, faculty of science, agriculture and engineering, university of zululand, richards bay, south africa citation tinta, n. & kolanisi, u., 2023, ‘overcoming barriers for people with disabilities participating in income-generating activities: a proposed development framework’, african journal of disability 12(0), a1133. https://doi.org/10.4102/ajod.v12i0.1133 original research overcoming barriers for people with disabilities participating in income-generating activities: a proposed development framework nokuthula tinta, unathi kolanisi received: 08 sept. 2022; accepted: 28 jan. 2023; published: 20 mar. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: people with disabilities in sheltered workshops are disempowered and face many barriers, adversely affecting their income-generating activities and weakening their competitiveness in the labour market. there is limited evidence on how to overcome these barriers. objectives: this paper seeks to propose a framework to overcome the barriers experienced by people with disabilities participating in income-generating activities in a sheltered workshop. method: the qualitative exploratory single case study was done with observations and semi-structured interviews as data collection methods. purposive sampling was used to select 24 participants between ages 22 and 52 years, and content analysis was done of transcribed interviews. community-based rehabilitation (cbr) guidelines were used to develop the framework. results: a proposed framework was developed that outlined intervention strategies to address the barriers experienced by sheltered workshop participants to promote increased participation of people with disabilities in income-generation activities, thereby improving their quality of life. conclusion: the participation of people with disabilities in income-generating activities is hindered by several barriers. however, the proposed framework overcomes the barriers to effective participation in income-generating activities. contribution: people with disabilities will benefit from this framework as it will address their challenges and needs for empowerment. it would also inform stakeholders involved about these challenges and strategies. keywords: people with disabilities; barriers; income-generating activities; sheltered workshop; intervention strategies; effective participation; framework. introduction periodic global economic meltdowns remain a challenge that exacerbates many people’s vulnerabilities. the aftermath of numerous disasters such as floods, growing inflation and high unemployment that have recently hit south africa, triggering economic downturns and volatility, has disrupted the country’s economic viability. the repercussions of this predicament have increased the likelihood of poverty (jain et al. 2020). regrettably, the detrimental implications of poverty are substantially worse among more vulnerable demographic groups, such as people with disabilities, than in non-disabled people. similar to the general population, people with disabilities want to work productively to achieve their goals (ofuani 2011). however, research shows that generally, people with disabilities are more likely to be resource poor, have lower employment rates, higher health care and living costs and less disposable income than non-disabled people (banks, kuper & polack 2017; gewurtz, langan & shand 2016; mitra et al. 2017). when the country’s unemployment rate rises, it creates greater competition for job positions and decreases the already limited space for people with disabilities to participate in the economy through employment. unemployment negatively impacts their lives, and they ultimately have to depend on disability grants, family members and charity groups to sustain their livelihoods (graham, moodley & selipsky 2013). people with disabilities are still not respected to the same extent as others to participate in economic development (faizal, kusnandar & sulaeman 2020), contributing to this population’s disproportionately high unemployment rate. according to international labour organisation statistics (ilostat) (2022), their median unemployment rate stands at 7.6%, compared with 6.0% for people without disabilities. even when employed, people with disabilities are more likely to be underemployed, earn less money and have fewer development opportunities than non-disabled people (bonaccio et al. 2020). the united states bureau of labour statistics (2021) states that people with disabilities are less likely to have completed a bachelor’s degree and higher than those with no disability. among both groups, those who had attained higher levels of education were more likely to be employed than those who had attained less education. income-generating measures become viable to explore as an alternative to paid employment for people with disabilities who are widely excluded from formal employment. empowering people with disabilities to generate income enables them to be financially independent and to integrate into society fully. mpofu et al. (2011) remark that people with disabilities and their families need to be empowered to take care of their needs and take control of their lives and decisions, which leads to an improved future. brisden (1998) posits that the economic empowerment of people with disabilities results in enhanced personhood and autonomy with economic benefits for society. likewise, eyben, kabeer and cornwall (2008) and gathiram (2008) concur with the ideology of economic empowerment and argue that it optimises sustainability and people-centred development and creates less dependency on state resources. economic empowerment maximises access to economic resources and opportunities such as employment, acquisitions of productive assets and skills development. employment discrimination is a reality of the labour market, and people with disabilities are more likely to be self-employed or unemployed than the general population (mprah 2020; pagán 2009). the literature demonstrates that poverty-eradication development strategies positively impact economic growth for the general population. globally, income-generating activities in developed and developing countries help citizens become self-sufficient regardless of disability status (singh & chudasama 2020). however, studies show that people with disabilities are often excluded from poverty-reduction efforts, limiting their participation in economic activities, decision-making and social life (ayoo 2022; rodrik 2007; singh & chudasama 2020). according to kallio (2019), while planning poverty reduction programmes and livelihood activities, context-specific local factors, target beneficiaries and market dynamics should be considered. programmes should also incorporate aspects beyond mere income generation. momsen et al. (2019) posit that intervention programmes should consider personal factors such as diagnosis, interpersonal skills (e.g. reading and writing) and job-related skills (coelho et al. 2013; harun et al. 2020). the south african government has developed several policies and frameworks to address the barriers that prevent people with disabilities from fully participating in society. an article published by tinta et al. (2020) which sought to highlight the barriers that limit the participation of people with disabilities in income generation activities (igas) in a sheltered workshop revealed that people with disabilities who work in sheltered workshops still encounter barriers that limit them from fully participating in igas. the barriers included the inability to use standard tools necessary for vocation, a lack of artistry skills, activities that are not stimulating, language and communication difficulties, a lack of funds and motivation. the understanding of barriers that limit economic participation for people with disabilities resulted in a need for effective intervention strategies to promote their participation (tinta, steyn & vermaas 2020). numerous research studies have been conducted on effective economic empowerment interventions targeting people with disabilities. tripney et al. (2015) examined such interventions to improve the labour market situation of adults with physical and sensory disabilities in lowand middle-income countries. the scholars could not conclude who, where or for whom interventions are likely to be effective and recommended a pressing need to engage in high-quality impact evaluations of interventions to encourage the involvement of individuals with disabilities in the labour market. groth and söderström (2014), who explored how self-help facilitation provided by the organisation response network, can contribute to the empowerment of people living with disabilities in rural zambia found that self-determination, education and participation contributed to the empowerment of people with disabilities. however, there is limited evidence regarding how the barriers that limit people with disabilities from effectively participating in income-generating activities in a sheltered workshop can be overcome. this paper aims to propose a development framework to overcome barriers that limit the full participation of people with disabilities partaking income-generating activities in a sheltered workshop. conceptual framework the theoretical framework of the study incorporated the motivational theory, the most widely accepted content theory of motivation (maslow & frager 1987) and the empowerment theory (zimmerman 1995, 2000). the two theories were integrated into the study to review and outline the factors that affect the potential for entrepreneurship through income-generation activities. the hierarchy of needs theory highlights the levels for satisfying human needs (maslow & frager 1987). empowerment theory is the complementary theory that aids in enhancing the actualisation of humans towards improved quality of life and well-being. maslow’s hierarchy of needs maslow’s theory is founded on the premise that humans have hierarchically ranked needs. the most basic of maslow’s hierarchy of needs are physiological needs that serve as the foundation for motivation. these are the needs for food, water, shelter and clothing that are necessary for the human body to function correctly. after the first level of needs is satisfied, safety and security become the driving force behind an individual’s behaviour. safety needs are related to security, stability, dependency, protection, education and vocational training (mcleod 2020). maslow believed that once a need has been met, it ceases to be a motivator. then, the next level of need must be activated to motivate the person. according to the organisation for economic co-operation and development’s poverty reduction guideline (oecd 2001), economic, human, political, socio-cultural and protective capabilities are the five essential attributes of poverty. these five aspects of poverty are intricately linked and affect one another. deprivation in one aspect typically leads to deprivation in other dimensions. economic capacities are linked to food security, material well-being and social standing, including the ability to generate income and consume and own assets. education, proper health and nutrition, safe drinking water and shelter are all critical to human well-being and form the foundation of human capabilities. because disability is linked to poverty and dependency (baffoe 2013), individuals could break the dependency cycle by participating in income-generating activities. on the next level is a social need, which refers to the need to bond with other human beings, love and be a group member. cultural conditions for belonging to a society, such as social standing or dignity, are critical for socio-cultural competencies and are highly prized by all of society. socio-cultural skills affect people’s ability to participate as respected members of society, and socio-cultural capacities are more than just their connections and interactions. they also include social class, beliefs and values. the next level of human needs is esteem, which is the desire to be respected by one’s peers, feel important and be appreciated. finally, insecurity and vulnerability are important aspects of poverty intertwined with other aspects (oecd 2001). the fulfilment of esteem needs leads to self-confidence, strength and the capability to be useful in an organisation. the inability to fulfil these needs causes feelings of inferiority, weakness and helplessness, leading to social withdrawal. people with disabilities are often described as incapable, and their competencies are questioned in many societies (baffoe 2013; opoku et al. 2018); hence, people with disabilities desire to be acknowledged as full participants in society. after gratifying these needs, the higher-level need for self-actualisation emerges. the self-actualisation need describes individuals’ desire to realise their potential and achieve all they can. economic empowerment economic empowerment for people with disabilities includes promoting opportunities to work and achieve self-sufficiency. this type of empowerment is vital to ensuring participation in the growth of society, especially in a country where poverty and inequality are firmly entrenched and promote independence, self-worth and economic power (ofuani 2011). economic empowerment can be attained by giving people the tools they need to identify their problems and seek solutions (unesco 1993) and by offering them the chance to enhance their vocational knowledge and skills to find meaningful employment consistently. this will enable individuals to work together to create long-term social and economic prosperity (united nations economic & social council 2014). increased productivity among working people with disabilities yields economic benefits (i.e. increased production of products and services) (powers 2008) although evidence shows that opportunities are limited for persons with disabilities to access decent employment (badmus 2017; kidd et al. 2018). enhancing productivity, social inclusion and shared affluence require education and skills development. education is an effective tool for economically empowering people with disabilities while simultaneously enhancing skills development, job opportunities and increasing access to economic resources (ofuani 2011). people with disabilities, like people without disabilities, need specific skill sets to participate in productive economic activities and compete in the job market. job market trends indicate that people with disabilities need assistance with education and training to improve their employment prospects (munemo & tom 2013). therefore, developing relevant skills is a key component of the countries’ efforts to reduce poverty and utilise human resources. evaluating the skills needed to expand and promote the opportunity for people with disabilities to participate in economic activities is crucial (powers 2008). those who have had the chance to learn new skills have proven their ability to earn a living and assist society (powers 2008). thus, economic empowerment ensures that people with disabilities have appropriate skills, capabilities, resources and access to sustainable income and livelihoods (luttrell et al. 2009) and reduces reliance on government resources (gathiram 2008). necessary skills include technical, vocational, professional and entrepreneurial skills. outcomes of training in vocational skills could yield self-directed employment and is an alternative to finding work to earn money. people with disabilities may benefit significantly from self-directed employment to gain financial independence. empowerment theory supports agency for change. additionally, it enables communities to recognise injustice and inequality and increase the power of individuals who are perceived as helpless. the nexus of empowerment theory and income-generating activities empowerment theory provides valuable frameworks for fostering human empowerment for people with disabilities participating in income-generating activities. in order to promote state-independent, self-sufficient households and communities that can take care of themselves, communities use income-generating activities to effectively utilise the resources that are already accessible locally (national development agency [nda] 2013). according to unesco (1993), income generation leads to gaining or increasing revenue. this does not imply that income-generating activities should always be seen to generate money or materials. instead, monetary value attaches a quantifiable value to the services or products produced. national development agency (2013) further states that income-generating activities provide additional benefits, including: (1) reducing poverty, (2) improving the well-being of the communities, as well as (3) empowering and self-reliance. income-generating activities generally assist economically disadvantaged populations. thus, income-generating activities seek to improve the quality of life for all citizens and support human resource development. in addition to providing a valuable framework for advancing human development, empowerment theory identifies practical strategies for combating oppression and boosting people’s strength, resiliency and resourcefulness. an empowerment theory includes processes and outcomes (perkins & zimmerman 1995; sadan 1997; zimmerman 1995, 2000). the empowering process includes structures, actions and activities to empower an individual. these processes enable individuals to develop skills and obtain resources to take charge of their decisions and solve problems (moran et al. 2017). outcomes consist of a measurable level of empowerment that an individual and organisation achieves as a result of an empowerment-focused intervention and newly acquired skills (moran et al. 2017; zimmerman 2000). both processes and outcomes operate at numerous ecological levels (i.e. individuals, organisations and communities) and may emerge differently in various circumstances and populations (zimmerman 2000). the nexus between the iga and economic empowerment is complementary and strengthens the household budget and the local economy by sustainably utilising locally available resources to empower people participating in iga. research method and design study design this paper builds upon an explorative single case study conducted on the barriers experienced by people with disabilities participating in igas (tinta et al. 2020). the qualitative approach explored the experiences of people with disabilities participating in income-generating activities in a sheltered workshop. setting the study was conducted in a sheltered workshop managed and supervised by the association for people with disabilities in bloemfontein, free state, south africa. the workshop only makes handcrafted products and sells them to the general public. the sheltered workshop was part of the university of the free state service module the author is responsible for. study population, sampling strategy and inclusion criteria the study population consisted of 54 people with various impairments who participated in igas. the participants were women and men between 18 and 60 years who represented various ethnic groups and languages, such as xhosa, zulu, sotho, afrikaans and tswana and who had been working in the sheltered workshop for more than 6 months were eligible for inclusion and purposefully selected (see table 1). only participants who had been registered at the sheltered workshop for more than 6 months were included in the study as they had a thorough understanding of the tasks carried out; hence, only 24 participants met the criteria and were selected. table 1: participants’ socio-economic status. data collection observations and semi-structured interviews were used to collect data. observations were conducted using an observational protocol that recorded data about the participant’s activities while making handmade products four times a week, for an hour and a half per day for two months. creswell (2007, 2013) asserts that lengthy interaction with participants prevents drawing incorrect judgements. all the observations made throughout the sessions were recorded in field notes for later reporting and reflection. following the observations, participants were scheduled for one-on-one interviews. the participants agreed that as the sheltered workshop was convenient for them, all interview sessions could take place there. the researcher found sesotho challenging to comprehend despite understanding and speaking english, isixhosa and isizulu well. as a result, a multilingual assistant who speaks sesotho and english was employed. the researcher and the assistant translated the english-written interview schedule into sesotho and isixhosa, respectively, and both languages were used to conduct the interviews. the reason for translating this interview schedule into these languages was that most of the participants in the sheltered workshop spoke sesotho and isixhosa. the interviews comprised short questions to elicit answers that reflected participants’ experiences with igas. probing questions were utilised to get more information and elaborate on specific issues. the probes included rewording the question and requesting additional information (bernard & ryan 2010; gobo 2008). the hour-long interview sessions were digitally recorded. saturation was reached, and data ceased with the 18th participants as no additional insight was identified. the researcher, therefore, conducted interviews with 18 of the 24 participants. according to green and thorogood (2004), 12–15 participants are deemed adequate for qualitative studies. trustworthiness was established according to the recommended strategies from lincoln and guba (1985). credibility, dependability and transferability were used as guiding principles. credibility was achieved through using triangulation methods along with audio recording interview sessions. dependability was promoted by using audiotapes and summarised transcripts. enough information about the protective workshop and the participants was provided to ensure transferability, allowing them to assess how the circumstances and outcomes could be applied to their own experiences. intervention categories of the proposed framework the four main intervention categories of the proposed framework included education, health, livelihood and empowerment. these categories were plotted against the community based rehabilitation (cbr) indicators outlined by the world health organization ([who] 2015) and saran et al. (2019). the who recognises cbr as a comprehensive and multisectoral approach to equalising opportunities and involving people with disabilities in communities. to achieve complete inclusion and empowerment of people with disabilities, cbr served as a framework for intervention categories and subcategories. the subcategories of the intervention cover lifelong learning and skills development, support system, self-employment and finances and motivation. some subcategories were modified and integrated with others to be context-based and address the barriers experienced by people with disabilities participating in income-generating activities. data analysis the researcher and the assistant transcribed recorded data in the original languages, sesotho and isixhosa. before analysis, the transcribed data were translated into english. two bilingual people confirmed the translations’ accuracy. inductive content analysis was used to analyse the transcribed text (ritchie et al. 2013) because it is a widely used qualitative research approach and scholars consider it a versatile way to analyse text data (cavanagh 1997). the researcher perused the material and noted initial ideas to get familiar with the text. after identifying and coding pertinent items, which were then grouped into subcategories, ideas and concepts were identified. conflicting theories and paradoxes were explored by presenting the data back to the participants for further exploration, and similar opinions were merged (onwuegbuzie et al. 2009; ritchie et al. 2013). finally, the researcher interpreted the findings. because there were few participants, data had to be manually analysed (gobo 2008). verbatim quotations from interview transcripts were extracted to illustrate relevant themes where appropriate. ethical considerations the researcher obtained permission to conduct the study from the workshop manager. the researcher established rapport with the participants to gain their consent and guarantee their anonymity (ritchie et al. 2013). the participants were requested to give verbal consent as they did not want to sign the written consent form because they believed that signing any document would reveal their illiteracy. verbal consent was obtained from the participants. all participants were informed that they had the right to decline to participate and could withdraw from the study at any time without any adverse consequences. participants were assured that their names would be kept anonymous, that pseudonyms would be used when transcribing, and that all other identifying information would be stored securely and deleted after the study. the research instrument contained information that was not emotionally harmful to the participants. ethical clearance to conduct this study was obtained from the university of free state research ethics committee (ref no.: ufs-hsd2016/1436). this included outlining the procedures adopted for data generation, storage and use. the facilitator and the workshop manager were present for the debriefing. this was done to answer any queries the participants might have and to ensure there were no misunderstandings about what was expected of them. in order to maintain privacy, interview sessions were held one-on-one with participants in the dining room while other participants were involved with their daily activities. findings and discussion two themes developed through analysis, namely ‘socio-economic status of the participants’, and ‘experiences with income-generating activities’. two sub-themes under theme two are discussed: (1) the types of income-generating activities that participants were involved in and (2) the barriers that limited their participation. socio-economic status of the participants the first theme included information on the participants’ socioeconomic status, comprising information on their education level, employment status and sources of income. education level six participants had completed their schooling up to the senior phase (grades 8–9), while the other eight had attended special schools up to the intermediate phase (grades 4–7). only one participant completed grade 11, and one went to school through second grade. employment status seventeen participants indicated that they were unemployed at the time of the study, mainly because of their disability and low school grades. a participant with cerebral palsy, who is self-employed outside of the workshop, explained as follows: ‘i never worked because of my grades, but i am self-employed, and i have a licence to drive.’ (h, male, age 24) three participants with epilepsy indicated that they were once employed, but their employment was terminated because of their disability. woman with epilepsy, stated: ‘i worked as a cleaner; my teacher found this job for me but told me later to stop because of my sickness, so i never worked after that.’ (j, woman, 36 years old) participants’ statements identified their disabilities and level of education as reasons why they left work involuntarily in the past. leonard cheshire disability (lcd), a leading provider of care and support to people with a wide range of disabilities, revealed similar findings in an unpublished baseline study (kett 2012). these findings are consistent with the views documented in the literature (gaunt & lengnick-hall 2014; gold et al. 2012) that people with disabilities have high unemployment rates because of a lack of skills. the findings are also supported by naami, hayashi and liese (2012), who noted that the unemployment rate for working-age people with disabilities in developing countries ranges from 80% to 90%. sources of income sources of income were considered important as these revealed the type of capital a person possessed. the participants disclosed that they occasionally received a stipend from the workshop in addition to disability allowances as a source of income. participants reported that they were all recipients of a disability grant of r1600.00 per month from the government. for the purpose of this study, the government grant was regarded as an income. seven participants also received a child support grant as an additional income. this finding suggests that these participants may escape poverty because of social grants. studies in south africa have found that social grants are beneficial in alleviating poverty (gathiram 2008; loeb et al. 2008; samson et al. 2005), and grants are effectively targeted and provide income to households (samson et al. 2005). all the participants reported that they received a monthly stipend ranging from r40.00 to r200.00 from income-generating activities based on their attendance and when their products were sold. it was indicated in the background information that the stipend was intended to be an interim payment given to participants to assist them in covering some of their basic costs while they were at the workshop rather than a fixed income to support family obligations. a study by koopman (2003) found that people with disabilities only receive an income if and when their products from income-generating activities were sold. four participants, primarily wheelchair users and sole breadwinners, stated that the disability grant money was insufficient as they had more needs than others without disabilities, as stated here by a woman with spina bifida: ‘i need to pay rent, food, clothes, school fees for my nephews, nappies for myself and shoes.’ (g, woman, 26 years old) a single mother, of three children, with a physical disability added: ‘it is not enough, especially for us women; we have more needs like pads, you know.’ (i, woman, 44 years old) the excerpts above show that a disability grant is used in households for other purposes rather than the intended person and that people with disabilities have more needs than people with no disabilities. trani and loeb (2010) found that households in sierra leone spend 1.3 times more on health care than non-disabled households, and people with disabilities have additional needs and expenses such as medicine, hearing devices and wheelchairs. therefore, people with disabilities need more income in order to achieve the same goals as people without disabilities. according to reith (1994), people with disabilities have to pay more for necessities like clothing, personal care products and house modifications that are seen as extravagances to people without disabilities. the findings demonstrate that sources of income for people with disabilities were insufficient when they needed to support others and themselves. experiences of people with disabilities with income-generating activities in the workshop the second theme identified is the experiences of people with disabilities with income-generating activities in the workshop. the subthemes that emerged from this theme were the types of income-generation activities the participants were involved in and the barriers that limit participation in income-generation activities. the latter subtheme is reported elsewhere in a previous publication titled barriers experienced by people with disabilities in income-generating activities: a case of a sheltered workshop in bloemfontein, south africa (tinta et al. 2020) and only summarised here. types of income-generating activities the participants were involved in participants engaged in various income-generating activities. six participants were doing beadwork such as necklaces and bracelets, eight were knitting scarfs, gloves and hats, two were sewing aprons and bags and the other two were making tapestry mats. the participants reported that they did not receive formal skills training but learned these skills informally from their co-workers at the workshop. this finding is consistent with lcd’s unpublished baseline survey (kett 2012), which found that people with disabilities often learn skills through friends, family and informal training. these income-generating activities are considered outdated, in low demand in the modern market and have limited scope for business expansion (kett 2012). these activities are seen as simple, within the means and capabilities of the participants, and requiring the least amount of human and non-human resources, such as skills, material and time to complete; they are among the most popular informal, traditional activities that people with disabilities partake in (akyurek & bumin 2017). this suggests that anyone can accomplish it, which clarifies why most participants engage in such activities. however, one can contend that despite being simple, prevocational training is still necessary for individuals to develop and master the skills needed to meet the labour market demands. in a study done by naami (2010) on the impact of unemployment on women with physical disabilities in tamale, ghana, training in old-fashioned designs was noted as a barrier to employment faced by women with disabilities. barriers that limit participation in income-generating participants noted several barriers that limited their participation in income-generating activities. the barriers include the inability to use standard tools necessary for the vocation, a lack of artistry skills, activities that are not stimulating, language and communication difficulties, a lack of funds and motivation. one of the participants reported he struggled to utilise the sewing machine because of the nature of his impairment, while another participant stated his sight impairment made it difficult for him to select the beads he preferred, which impacted his performance. the researcher observed that some of the projects were constructed in a way that there was no prospect for growth and no practical framework for a long-term project goal. the products, such as those from knitting, tapestry and beading, were constructed unevenly, and there were inconsistencies in the construction of the patterns. it was also noted that seven participants failed to measure the fabric before cutting, leading to the fabric being wasted. nine participants asserted that the projects they participated in were not stimulating. as a result, they ended up wandering around or not finishing their work. participants also noted that they were experiencing a language barrier with the facilitator because she only spoke english and afrikaans. the participants did not comprehend english and primarily spoke sesotho and isixhosa. their inability to adequately interact with the facilitator affected their participation as they could not articulate their goals. all the participants unanimously reported that their biggest challenge was the lack of funds to purchase necessary supplies. this was evident as some of the participants were using tiny-sized beads that the community members had provided. the participants indicated that the only beads available were the ones they were using and were given scrap material to work with, and this hindered their full participation and resulted in poorly constructed products. the participants felt they were doing the same activities without any acknowledgement and positive reinforcement after completion. the barriers mentioned above, directly and indirectly, limit the participation of people with disabilities in the income-generation activities and need to be overcome in order for them to participate in the labour market fully. framework to counteract the barriers that limit the participation of people with disabilities partaking in income-generating activities in a sheltered workshop a development framework is proposed for interventions to overcome the barriers that limit the full participation of people with disabilities partaking in income-generating activities. the development framework (table 2) reflects cbr intervention categories and subcategories and barriers that limit the participation of people with disabilities in income-generating from the second theme of this research. interventions are then proposed to reduce the barriers limiting the full participation in igas. four out of the five main intervention categories in the cbr approach, namely education, health, livelihood and empowerment, were selected as relevant to the study. proposed interventions may take the form of a device, programme, strategy or other types of action. the ideas for these interventions were drawn from literature (khasnabis et al. 2010; saran et al. 2021; tripney et al. 2015; who 2015) and the author’s experience and involvement at the workshop. table 2: intervention strategies to counteract barriers that limit the participation of people with disabilities partaking in income-generating activities. conclusion people with disabilities face barriers to full participation in income-generating activities at protective workshops, such as the inability to use standard tools necessary for the vocation, lack of artistry skills, language and communication difficulties, activities that are not stimulating, lack of funds and lack of motivation. through this study, a framework was developed that proposes intervention strategies to counteract the barriers that limit the full participation of people with disabilities in income-generating activities in a protective workshop. proposed strategies are categorised according to relevant cbr pillars for interventions that promote economic empowerment for people with disabilities. people with disabilities, instructors and organisations can use the framework to employ education, health, livelihood and empowerment intervention strategies to counteract the barriers and meet the needs of people with disabilities, increasing participation and improving the quality of life. future research is needed to test the effectiveness of the intervention strategies and should be validated by people with disabilities. acknowledgements the authors thank the participants who took part in the study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions n.t. conceptualised the study, conducted the data collection, analysed the data, drafted the initial version of the article to its completion. u.k. conceptualised the study, advised the development of the framework and co-authored the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability consent was provided by the participants for data to be shared within the research team only. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references akyurek, g. & bumin, g., 2017, ‘community participation in people with disabilities’, in m. huri (eds.), occupational therapy-occupation focused holistic practice rehabilitation, pp. 81–107, intech, croatia. 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accepted: 07 aug. 2022; published: 18 apr. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: preventing adversity from accelerating among learners with specific learning disabilities (sld) is imperative. continuous adversities, such as social-emotional, psychological and academic difficulties, characterise learners with sld. prior studies have been conducted on learners with sld developing a disorder because of the difficulties they face. however, very few studies offer evidence of how learners presenting with sld cope despite their learning disability. objectives: the study sought to investigate what resilience resources are available among learners with sld in learners with special education needs (lsen) schools and to provide stakeholders with evidence of resilience enablers for learners with sld. method: an exploratory quantitative research study was adopted, and 217 respondents with sld were selected through purposive sampling in four lsen schools. these learners completed the child and youth resilience measure (cyrm-28). data were analysed using the statistical package for the social sciences (spss) and the custom table was used as a statistical technique results: even though the presence of sld negatively affects an individual’s academic, psychological, social and emotional functioning, the results of this study show that individual qualities, relationships with caregivers and peers and contextual resources were resilience-enabling resources for learners with sld. conclusion: the study’s results show that the combination of individual attributes, relational and environmental factors enables the resilience of learners with sld. when given accessible and meaningful support, learners with sld can develop resilience. contribution: the study contributes to the dearth of knowledge regarding the resilience of learners with sld in lsen schools. keywords: individual factors; contextual factors; learners with special education needs; relationships; resilience; resources; risk; specific learning disability. introduction specific learning disabilities (slds) result from biological and contextual factors. the diagnostic and statistical manual, 5th edition (dsm-5) (2013) defines sld as one of the neurodevelopmental disorders that originate from biology and comprise the interaction of genetics and contextual factors. the interaction between these factors affects the ability of the individual to process information adequately. specific learning disabilities include disabilities in basic education skills like reading, listening, speaking, written expression or mathematical calculations (grigorenko et al. 2020). children with slds often suffer continuous adversities, such as academic problems, which have implications on their learning and the functioning of their families. the challenges faced by learners with slds extend to their social, emotional and psychological functioning. specific learning disabilities could result in repeated failures in school and dropping out. learners who drop out of school are likely to have adverse consequences on their quality of life, increasing the risk of relying on social welfare organisations (kohli, sharma & padhy 2018). thus, slds cause stress to learners’ lives, both at school and afterwards. norris et al. (2020) argue that the social and emotional problems faced by learners with slds are likely to continue into adulthood and limit their prospects of success. the combination of a stressful life and everyday difficulties could result in nonresilient outcomes for learners with slds. researchers (see haroardottir, juliusdottir & guomundsson 2015; morrison & gosden 2019) state that sld is a risk factor as it predicts both affirmative and undesirable outcomes. many children with sld develop disorders due to the inability to resile in the face of hardships in their lives. however, some individuals with sld manage to cope with adversities despite the presence of sld in their lives and are resilient (panicker & chelliah 2016). ungar (2019) states that resilience is evident when an individual faces adversity. in prior studies, researchers found successful, well-adjusted individuals, despite the hardships faced by learners with sld (haroardottir et al. 2015). a study by holtge et al. (2021) states that there are factors within learners’ social ecology that could enhance their resilience and assist them in overcoming the challenges accompanying the presence of sld. ebersöhn (2019) points out that resilience mitigates risk factors impacting individuals’ functioning. resilience is defined as: [t]he process of negotiating, managing and adapting to significant sources of stress or trauma. assets and resources within the individual, their life and environment facilitate this capacity for adaptation and bouncing back in the face of adversity. (windle 2011:163) masten (2014) affirms that resilience is an individual journey that anyone can develop through their thoughts and behaviour. to bounce back from adversities, a person needs to develop effective coping techniques. masten regards resilience as a person’s ability to do well in the face of adversities. ungar (2013) agrees that doing well refers to individuals who display positive development, despite the adversity that would usually predict adverse consequences. thus, in this study, the author argues that resilience resources enhance the resilience of learners presenting with sld. this was confirmed in a study by windle, bennett and macleod (2020), where the accessibility of resources facilitated resilience. because of the high prevalence of sld in learners (grigorenko et al. 2020) and its associated negative impact on the overall functioning of individuals (kohli et al. 2018; norris et al. 2020), the current study looked closely at what enables them to cope despite sld. several studies (see fletcher et al. 2018; seidenberg 2017) have been conducted that describe sld, its causes and diagnosis, as well as how it affects learners’ learning. studies on resilience (see panzeri et al. 2021; van breda & theron 2018) have also been conducted on various topics but very few on the resilience of learners with sld. therefore, this study investigated the resilience of learners with sld in learners with special education needs (lsen) schools to add to the growing body of knowledge on this topic and to provide a foundation for future studies and interventions focused on building resilience in learners with sld. scientifically, researchers in african and non-western continents are faced with the challenge of decolonising psychology to their specific contexts and population. theron (2013) paid attention to cultural resilience indicators in south africa. theron and phasha (2015) state that: [m]any of the resilience processes identified in international studies manifest locally also, including attachment, mastery, and meaning making. however, these authors note that south african studies also focus on indigenous worldviews, including spirituality, a duty of kin and individuals’ interdependence. (p. 54) for africans, attachments extend to extended family members, not mainly to parents (theron & theron 2010). in this case, practitioners working with learners with sld need to consider their resilience based on their context and indigenous worldviews. this study is informed by, and in alignment with, a social-ecological perspective of resilience. a social-ecological framework of resilience this article is part of a larger scope of the author’s doctoral thesis, which was informed by ungar’s social-ecological framework of resilience. this framework of resilience’s origin can be traced from bronfenbrenner’s bio-ecological system theory (bronfenbrenner 1974). it suggests that the context has a pivotal role in individuals’ development and provides insights into why individuals bounce back from adversity. a child’s resilience depends on the individual and contextual factors that interact together. lessard et al. (2014) assert that resilience resources for learners with sld include intrinsic individual abilities and external contextual support (such as parents, peers, school, neighbourhoods and communities) that diminish the probability of adversities. theron (2016) argues that there is a need to comprehend what allows certain learners with sld to resile but not their counterparts with similar obstacles. up to the time of writing, the question about what enables learners with sld to cope with their learning disability remained unanswered, as there are few studies that have focused on sld and resilience. for this reason, the study was conducted to provide some insights into the resilience profile of learners presenting with sld in the lsen school environment. aim and objectives this current study aimed to investigate the resilience resources among learners with sld in lsen schools in gauteng. to achieve this, the study sought to explore which individual factors, relational and contextual factors are available to learners with sld and enable their resilience despite their learning disabilities. research methods and design this article is one of the outcomes of the researcher’s doctoral study. the main aim was ‘to investigate the relationship between social-ecological support and resilience among learners with sld in lsen schools’ (mawila 2019:iv). the study adopted an exploratory quantitative design to explore factors that enable the resilience of learners presenting with sld. a total of 217 learners with sld in four lsen schools in the greater johannesburg area in the gauteng province, south africa, took part in the study. only respondents who showed a willingness to take part in this study were selected. male and female respondents who were aged 10–19 years were purposefully selected from lsen schools: one on the west rand, one in johannesburg north, one in soweto and one in elspark. these schools were chosen for this study because they are lsen schools for learners with sld. the researcher requested authorisation from school principals to collect data for a larger-scale doctorate study. the researcher also discussed this with caregivers and their children during the study. data was collected quantitatively, using the child and youth resilience measure (cyrm-28) (liebenberg, ungar & van de vijver 2012). the cyrm-28 intends to provide ‘a more comprehensive understanding of the processes of resilience across culture and context, accounting for the heterogeneity of culture and experiences of youth’. (liebenberg et al. 2012:87). the categories of the cyrm-28 are based on the individual, relationship and community (culture, spirituality and education) resilience resources. liebenberg, ungar and leblanc (2013) indicate that the cyrm-28 is: [a] self-report instrument validated originally with a purposive sample of 1451 youth growing up and facing diverse forms of adversity in 11 countries (canada, usa, colombia, china, india, russia, palestine, israel, tanzania, the gambia, and south africa). (p. 131) three student psychologists at the university of johannesburg’s educational psychology department were employed as research assistants in this study. only multilingual research assistants were selected to ensure that they were able to speak the languages spoken by respondents in the four schools (this included setswana, afrikaans, english, isixhosa, xitsonga, sesotho and isizulu languages). the researcher discussed with the research assistants the purpose of the study, and training of the research assistants was done by the researcher. the researcher and research assistants translated the cyrm-28 items from english to local languages; however, back translation was not done. the assistants’ role was to administer the questionnaires; this included reading, translating, monitoring and assisting respondents in completing the items. because of the nature of the study and some respondents’ inability to read due to sld, research assistants were sought to read the items of the cyrm-28 to ensure a precise understanding of items. translations of items to other languages were done by research assistants if required. translation of the cyrm-28 into another language was also done in a study by ungar and liebenberg (2011) to ensure accuracy. to analyse data, the software popularly known as the spss (statistical package for the social science) version 25 (ibm corporation, armonk, new york, united states) was used. the researcher used an spss statistical technique called the custom table, developed by ibm spss, which summarises ordinal data. the services of the university of johannesburg statkon (statistics consulting company) department were sought for data analysis assistance. ethical considerations firstly, permission to conduct this study was granted by the faculty of education ethics committee (reference number sem 2 2018-007) at the university of johannesburg, followed by the gauteng department of education (gde). secondly, the resilience research centre1 also approved the researcher’s use of the cyrm-28 questionnaire in this study. thirdly, the school headmasters further permitted the researcher to conduct research in their schools and to collect data. thereafter, caregivers (parents or legal guardians) of learners were informed about the study and its purpose. they were also provided information on how their children would participate in the study and how the completed questionnaires would be protected and kept confidential. lastly, once caregivers signed consent forms, learners as respondents of the study also signed the assent form (10–12 years) or consent form (13 and above) to agree with their willingness to participate in this study. during data collection and as per the requirement in a quantitative study, respondents were informed that they should not write their names on the questionnaires to ensure anonymity. they were also informed that they could withdraw from the study and that no action would be taken against them if they did. they were also told that an educational psychologist was on standby during data collection should they need someone to talk to. respondents were informed of the south african depression and anxiety group (sadag) toll-free number in case they needed psychological assistance after the study was concluded. results before data was collected, the researcher sought the services of a statistician at the university of johannesburg’s statkon department to discuss the study’s purpose and assess the validity and reliability of the measure in this specific study. based on the study’s objectives, the statistician advised on the best statistical techniques to use. once this was done, data were collected and the researcher captured data on the spss version. thereafter, the statistician completed the data analysis and a meeting was held to discuss the analysis. the results were then e-mailed to the researcher for write up. table 1, table 2 and table 3 show the percentages, means, frequency count and standard deviations for the cyrm-28 primary factors, such as individual, relationship and context. a likert scale comprising five points was used to measure the responses of the cyrm-28. however, the upper and lower scales were joint for straightforward interpretation as advised by morgan et al. (2007). for this specific study, the availability of the resources that enable the resilience of learners presenting with sld was assessed using the custom table. results of the study were categorised into the individual, relationships with others and contextual domains. table 1: individual factors. table 2: relationships. table 3: context factors. individual domain individual resilience factors refer to assets, qualities and strengths a person possesses which enable them to combat their adversities. table 1 illustrates the custom table for individual factors. as evident by the high mean values ranging between 3.63 and 4.34 in table 1 (individual factors), respondents were conscious of their abilities. the cyrm-28 revealed that individual factors enable the resilience of learners with sld. table 1 displays that self-efficacy was critical to learners with sld; 166 respondents reported finishing what they started because they have faith in their competencies. learners with sld also viewed self-awareness as imperative for the development of resilience. the results on the cyrm-28 displayed that learners know their strengths, as revealed by 184 learners reporting awareness of their inner strengths. thus, self-awareness was a resilience resource regardless of the presence of sld. in addition, the ability to problem solve was viewed as enabling them to cope regardless of sld. this study demonstrated that 144 respondents stated that they could solve problems effectively without hurting themselves and others. this shows that their problem-solving ability enhanced their resilience. lastly, self-confidence was noticed as resilience enabling; 169 respondents stipulated that people view them as fun to be with, suggesting that confidence in themselves makes others happy. relationship domain meaningful relationships are critical in enabling individuals to reinforce resilience. this study found that learners with sld viewed relationships with caregivers and friends as resilience-enabling resources. table 2 illustrates the custom table for relationships. the variables observed in table 2 (relationships) show that items assessing relationships demonstrated affirmative responses, with mean scores above three. learners with sld reported that their families care for their psychological and physical needs. the relationships they have with their caregivers enable their resilience. a total number of 185 learners recognised that their caregivers pay close attention to them, and 184 testified they have sufficient food to eat when hungry. moreover, 193 respondents felt safe around their family or caregivers, and 173 said their family members supported them during challenging times. in this study, meaningful interactions with peers emerged as resilience factors for learners presenting with sld. child and youth resilience measure results revealed that 166 learners conveyed that their friends stand by them in trying times and 154 of them felt supported by their friends. thus, positive connections and attachments with peers are imperative for learners with sld to combat their challenges with confidence. furthermore, the study revealed that social competence is a resilience enabler. social competence refers to a person’s ability to engage and relate to others positively (junge et al. 2020). a significant number of the respondents in this study reported having social competence skills, as 199 respondents attested to having opportunities to advance skills valuable for their future. in comparison, 175 respondents confirmed that they have a chance to show people that they can act responsibly and become adults. in this study, interacting with other people emerged as a resilience resource. context domain context is an important resilience resource, and the treatment the individual receives from their context plays a significant role in their resilience development. table 3 presents the custom table for items measuring respondents’ responses to contextual factors. the above three mean scores in table 3 (context factors) proposed that learners are conscious of contextual opportunities available to them. in this study, 166 respondents reported being well treated in their community. respondents considered spirituality as enabling resilience; 170 respondents perceived spiritual beliefs as a basis of strength. the results of this study imply that learners knew of accessible spiritual opportunities in their environments. serving the community is a resilience enabler for learners with sld; 162 learners regarded it as necessary to serve their community. contributing to a community in this study was viewed as resilience-enabling, as it gives learners with sld a sense of determination and purpose in life. moreover, education is regarded as important to learners with sld and is a resilience resource, as 203 learners regarded education as of fundamental value. one of the critical resilience enablers in this study was the respondents’ sense of belonging at their schools. many respondents (163) reported feelings of belonging in their school. respondents in this study are in an lsen school; a sense of belonging could be attributed to the schools being designed to meet their educational needs. furthermore, culture was also regarded as an enabler of resilience. the cyrm displayed that 180 learners have access to individuals they look up to in different cultures and 179 learners stated being proud of their ethnic upbringing. the study results recommend that accessible role models enable the resilience of sld learners in their respective cultures. thus, the positive influence of role models gives them an aim to aspire to and supports learners in coping with adversities that come with having sld. discussion the cyrm-28 was used in this study to collect quantitative data to explore resources contributing to the resilience of learners presenting with sld in lsen school contexts. three domains were established based on the results of the cyrm-28, namely individual factors, relationships and context. key results of the study show that respondents’ individual attributes, such as problem-solving, self-confidence, self-efficacy and self-awareness, enable them to overcome adversities. self-efficacy was found in the cyrm-28 questionnaire as essential for learners presenting with sld in lsen schools. a prior study by amitay and gumpel (2015) noted that self-efficacy emerged as a resilience factor among schoolgirls with sld. álvarez et al. (2022) also found that self-efficacy enabled adolescents to cope with adversities. respondents of this study acknowledged awareness of their personal strengths in the cyrm-28. similarly, a study by martins and neto (2016) found that self-awareness was a significant protective factor in promoting people’s resilience. for learners with sld, self-awareness and problem-solving ability were critical to bouncing back when faced with sld adversities, thus enabling their resilience. in correlation with this study, malindi’s study on street children also revealed that problem-solving ability was resilience enabling (2014), and this links to the individual traits explained in the social ecology framework of resilience (ungar 2019). furthermore, self-confidence was seen as enabling resilience in this study, which was consistent with malindi’s finding that self-confidence was a resilience resource for street adolescents. thus, previous studies correspond with the current study’s results, which found that certain individual traits are evident resources for resilience. in the relationship domain, the factors that enabled resilience for learners with sld were relationships with parents or caregivers, meaningful relationships with friends or peers and social competence. positive interactions with other individuals emerged as a resilience factor. luthar, ebbert and kumar (2021) state that parent–child attachments enhanced and fostered children’s resilience during the coronavirus disease 2019 (covid-19) pandemic. enabling resilience factors such as supportive relationships with others are part of the family processes at the microsystem level. recent literature confirms that these relationships buffer stressful life situations (bellis et al. 2017; van rensburg, theron & rothmann 2015). for learners with sld in south africa, it should be considered attachments with others, including significant people in their immediate and extended family, neighbours and other community members. this aligns with a popular african proverb, ‘it takes a village to raise a child’. mikucka and rizzi (2016) assert that this proverb implies that the whole community has a responsibility in raising children, and the responsibility does not only lie on the parental shoulders. sefotho (2019) affirms that community members are committed to supporting their individuals. in african contexts, community members are expected to support and provide individuals with resources to enable their development and functioning. for individuals to bolster resilience, meaningful attachments are critical. in this study, learners with sld reported that meaningful relationships with friends and peers were resilience enabling and assisted them in combating sld with self-confidence. a study by graber et al. (2016) found similar results. their study found that connections and friends promote resilience for individuals in south africa because they enable communication, social acceptance, support for each other and positive interaction. therefore, these friendships are critical in providing learners with sld with valuable emotional support. studies (see theron 2014; van harmelen et al. 2017) also state that friendships among individuals facing adversity foster adjustment, flexibility and healthy development. the study further revealed that social competence was also viewed as a resilience resource. social competence is a fundamental skill for relating to other people and is critical in developing relationships. according to saito and okayaso (2014), social competency is linked to resilience and is the basis for creating relationships with other people. a study by gómez-lópez et al. (2022) also revealed that social competence among adolescents was resilience enabling. within the context domain, the cyrm-28 results further revealed that learners with sld considered having access to resources within their context as a factor enabling their resilience. these resources include access to education, spirituality, role models, serving the community and cultural identification. a study by malindi (2014) stipulated that for young people to be resilient, access to school facilities, education and information is imperative. the study corroborates prior studies. for example, theron (2016) revealed that sesotho-speaking individuals regard education as crucial because it offers socio-economic advantages for their lives, families and community. other resilience studies (see theron 2017; van breda 2017) also reported the significance of education as a resilience enabler for south african black youth. in addition, a study by van rensburg et al. (2013) noted that southern sesotho-speaking adolescents perceived education as supportive to their resilience. furthermore, a sense of belonging at lsen schools was also found to be resilience enabling for learners with sld in this study. a turkish study revealed that students’ positive feelings towards school and a sense of belonging at school were factors that enabled resilience (yilmaz 2016). a sense of belonging encourages positive development in youth, empowering them to utilise the resources within their community. the study also found that spirituality for learners with sld assisted them in combating adversities. this result correlated with a study by young (2017), which affirmed that faith was the source of resilience for their participants. however, an interdisciplinary approach is needed when issues of spirituality are addressed because human beings are complex (vinueza 2017). moreover, the study’s results further suggest that the availability of role models for learners’ respective cultures was a vital resilience resource. leaners presenting with sld overcome adversities due to their role models’ aspiration and positive influence. the study corresponds with previous studies indicating that having a role model enables resilience. to illustrate, a study by malindi (2014) on street children reported that having role models contributed to their resilience, regardless of adverse circumstances they found themselves in. additionally, abaza and nelson (2018) also found that role models enabled the resilience of learners. additionally, a sense of duty was also viewed as a significant resilience factor for learners with sld, because individuals have a role to play in improving the world. in this study, learners with sld reported that serving their community enabled their resilience. a sense of duty towards the community links to ideologies of the viewpoint of ubuntu. ubuntu refers to the idea that ‘a person is only a person through other persons’ (tutu 2006:122). subsequently, learners viewed their role in participating for the betterment of their communities, thus assuming the role of agents of change. the results of the study further confirmed what the social-ecological framework of resilience maintains, namely that learners’ resilience is a combination of individual factors, relationships with others and contextual resources. cinner and barnes (2019) affirm that these codependent connections between individuals and ecologies build resilience. it is the interdependence of social-ecological resources that accounts for the resilience of learners with sld despite their learning disabilities. in light of this, this study challenges the view that learners with sld are not resilient and that they are prone to become dropouts, as some studies have previously suggested (see grigorenko et al. 2020; norris et al. 2020). strengths and limitations the study provides insights into the resilience coping mechanisms of learners presenting with sld. this study contributes to the dearth of literature on the resilience of learners with sld in lsen contexts. the study’s results could be a foundation for developing primary interventions for learners presenting with sld in lsen schools and adequately overcoming adversity before resulting in pathology. consequently, this could reduce the high dropout rate in schools. the current study advocates that parents, schools and community members have a pivotal role in championing learners’ resilience. collaboration between stakeholders is imperative for fostering their resilience despite sld. the study had several limitations. a self-report questionnaire was used to collect data, and respondents may have responded to items based on construct biases and the likelihood of the items. additionally, respondents’ completion of the cyrm-28 could have been affected by their experiences and emotions at the time of completing the measure. despite this, haeffel and howard (2010) stress that self-report measures provide valued insights into the constructs studied. to ensure a fair comprehension of the cyrm-28 items, research assistants translated items for learners in an lsen school in soweto. translating items from english to different home languages extended the data collection period, as some words were not possible to translate, which may have been detrimental to the reliability of the cyrm-28 questionnaire. conclusion this study establishes a foundation for future research to be conducted in a similar context, namely to investigate the resilience resources that enable learners with sld in lsen schools to cope with their learning disabilities. the cyrm-28 results confirm that learners with sld are not necessarily as vulnerable as previously thought; they can use the resources in their environment to enable their resilience. in the absence of risks, resilience is nonexistent and individuals’ adaptation processes to alleviate risks are not noticeable. studies on resilience have highlighted various risks and resilience processes. nevertheless, minimal studies have focused on learners presenting with sld in lsen schools and their resilience. thus, this study investigated the resilience resources of learners with sld in lsen schools. this study calls upon parents, school personnel, mental health experts and scholars to consider the factors that enable resilience when dealing with learners with sld. the study concludes that researchers, teachers, psychologists, parents and community members have a duty to make available resilience resources for learners presenting with sld in lsen schools. in contrast, learners have a role in making better use of accessible resources. the results of this study apply only to lsen schools. it would be worthwhile to gain some insights into the resilience factors of learners presenting with sld in full-service or mainstream schools. further studies could include qualitative measures to explore how the resources identified are used by learners with sld to enable their resilience. further research is required regarding interventions to promote learners’ resilience for successful development and application. during the covid-19 pandemic, learners with sld could not attend school for an extended period, and some had to use technology to assist their learning. future studies need to consider the impact of the covid-19 pandemic on the resilience of the respondents, using quantitative and qualitative methods. acknowledgements this article is a portion of my large-scale doctoral study. my appreciation goes to my promoter dr helen dunbar-krige from the university of johannesburg, for her contributions towards my professional development. competing interests the author declares that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions d.m. is the sole author of this article. funding information this study was supported through an earmarked grant allocated as part of the teaching and learning development capacity improvement programme implemented through a partnership between the department of higher education and training and the european union. data availability the data of the study would be made available upon reasonable request from the author. the study was quantitative in nature and participants cannot be identified. disclaimer the views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of any affiliated agency of the author. references abaza, m.m. & nelson, k.g., 2018, ‘leading by example: role modeling resilience helps our learners and ourselves’, academic medicine 93(2), 157–158. https://doi.org/10.1097/acm.0000000000001936 álvarez, r.g., parra, l.a., ten brummelaar, m., avraamidou, l. & lópez, m.l., 2022, ‘resilience among lgbtqia+ youth in out-of-home care: a scoping review’, child abuse & neglect 129, 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criminology, university of birmingham, birmingham. footnote 1. http://cyrm-28.resilienceresearch.org/ abstract background research methods and design results discussion limitations recommendations conclusion acknowledgements references about the author(s) denis nono department of global health and development, faculty of public health and policy, london school of hygiene and tropical medicine, united kingdom medical research council (mrc), uganda virus research institute (uvri) and london school of hygiene and tropical medicine (lshtm) uganda research unit, entebbe, uganda andrew s. ssemata department of global health and development, faculty of public health and policy, london school of hygiene and tropical medicine, united kingdom medical research council (mrc), uganda virus research institute (uvri) and london school of hygiene and tropical medicine (lshtm) uganda research unit, entebbe, uganda femke bannink mbazzi department of global health and development, faculty of public health and policy, london school of hygiene and tropical medicine, united kingdom medical research council (mrc), uganda virus research institute (uvri) and london school of hygiene and tropical medicine (lshtm) uganda research unit, entebbe, uganda international centre for evidence in disability, department of epidemiology and population health, london school of hygiene and tropical medicine, united kingdom janet seeley department of global health and development, faculty of public health and policy, london school of hygiene and tropical medicine, united kingdom medical research council (mrc), uganda virus research institute (uvri) and london school of hygiene and tropical medicine (lshtm) uganda research unit, entebbe, uganda african health research institute, durban, south africa citation nono, d., ssemata, a.s., bannink mbazzi, f. & seeley, j., 2024, ‘practice of clean intermittent catheterisation in children with spina bifida: a scoping review’, african journal of disability 13(0), a1473. https://doi.org/10.4102/ajod.v13i0.1473 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa’, under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research practice of clean intermittent catheterisation in children with spina bifida: a scoping review denis nono, andrew s. ssemata, femke bannink mbazzi, janet seeley received: 14 may 2024; accepted: 11 sept. 2024; published: 22 nov. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: spina bifida is a congenital neural tube defect, where there is incomplete formation of the spinal cord and vertebrae, resulting in abnormal development of the neural tube. this affects bladder function and urinary incontinence. clean intermittent catheterization (cic) is used to manage bladder and bowel management. objectives: this study aims to scope evidence on the facilitators and barriers to usage and practice of cic in children with spina bifida in low-income countries. method: we searched databases including pubmed, web of science and scopus, and screened articles for inclusion following the prisma-scr guidelines. the search terms included ‘spina bifida ([continence management] and [clean intermittent catheterisation]) and ([barriers to clean intermittent catheterisation] or [low income countries]) or (myelomeningocele)’. full-text assessment for eligibility excluded 202 articles. twenty-two articles were reviewed and twelve full-text articles were excluded because of limited content. ten articles published in english between 2004 and 2023 were selected for review. results: barriers in practicing cic include pain and discomfort in catheter insertion, stigma and fears; inaccessibility of public toilets, unavailability of appropriate catheters, difficulty in positioning, limited quality of teaching and challenges with accessing supplies. facilitators include starting cic in infancy, follow-up by healthcare providers, support from family and community members, quality of training, continuous practice of cic, utilisation of lubricants, reuse of catheters and other low-cost materials. conclusion: our review summarises facilitators and barriers to cic and provides recommendations for further research, which includes the involvement of family members and community-based rehabilitation workers. contribution: this article contributes to a better understanding of cic use in low-income countries. keywords: spina bifida; clean intermittent catheterisation; barriers; facilitators; africa. background the focus of this scoping review is facilitators and barriers to using and practicing catheterisation in persons with spina bifida in lowand middle-income countries (lmics). spina bifida is a neural tube defect (ntd), a congenital disability, whereby the spinal cord and vertebrae do not form completely and the neural tube fails to develop normally (warf et al. 2011). the condition is caused by a fault in the development of the central nervous system in early pregnancy, normally during the first 25 days (northrup & volcik 2000). in low-income countries, 66% of children with spina bifida also develop hydrocephalus (warf et al. 2009), causing paralysis below the lesion and progressive hydrocephalus. as most children with spina bifida have some degree of paralysis, mobility is affected along with bladder and bowel control (andren & grimby 2000; danielsson et al. 2008; northrup & volcik 2000; verpoorten & buyse 2008; warf & campbell 2008). children with spina bifida are either able to walk with or without aids or they have to use a wheelchair depending on the height of the lesion. it is also evident that this paralysis causes 90% of urinary and faecal incontinence (verpoorten & buyse 2008). children with spina bifida have a high probability of renal complications, including hydronephrosis and renal failure (kasabian et al. 1992). notably, effective bladder management is critical to preventing renal damage and promoting social dryness (filler et al. 2012). clean intermittent catheterisation (cic) was introduced in 1972, by lapides et al. (2002) in persons with bladder dysfunction and urinary incontinence revolutionising neurogenic bladder management. clean intermittent catheterisation is the most commonly used procedure for persons with spina bifida who require an alternate voiding method (kessler et al. 2009; van achterberg et al. 2008; wilde, brasch & zhang 2011). the ability to identify which infants are at the highest risk of urinary tract deterioration has prompted the initiation of prophylactic therapy (kasabian et al. 1992) including cic to avoid high intravesical pressures and the use of medications that relax the external sphincter (kasabian et al. 1992). the therapy is fundamental in the treatment of patients with alterations in bladder voiding and it contributes to avoiding renal damage and improving urinary continence (sager et al. 2022). angermund et al. (2021) considered intermittent catheterisation as the gold standard and an effective and safe measure to allow bladder emptying at regular intervals associated with preventing complications of urinary stasis in children with spina bifida (angermund et al. 2021). sager et al. (2022) mentions that, to assist children with spina bifida in emptying their bladder, most of them begin cic shortly after birth. an early start with cic promotes greater adherence and adaptation of both the child and the members of the family. uptake of cic is associated with the promotion of social inclusion, boosting self-esteem and independence among children with spina bifida, their parents and caregivers (assis & faro 2011; woodward & rew 2003). the procedure is invasive, requiring a clean, disposable or reusable catheter inserted into the urethra to empty the bladder of urine by the person with spina bifida or his or her caregiver 4–5 times a day. in all, children with spina bifida and their families select catheters depending on personal preference, cost, portability and how easy it is to use (sager et al. 2022). as a first-choice treatment for bladder emptying, cic practice can adequately and safely ensure no residues and infections in children with spina bifida and is a valuable tool for achieving continence (verpoorten & buyse 2008). in uganda, social exclusion as an outcome of not practicing cic among peers has an impact on the sequence of cic practice and usage (bannink mbazzi et al. 2016). poorly managed incontinence leads to social exclusion among peers, community and family members (bannink mbazzi et al. 2016). in addition, social barriers to care and support leave children feeling isolated, demoralised and unsupported during cic practice, ultimately affecting their long-term adherence to the intervention (bannink mbazzi et al. 2016). in the global north, the effectiveness of the cic technique has been documented (jeruto, poenaru & bransford 2004) but there is limited information on its application in lmic (jeruto et al. 2004). principally, cic, oxybutynin and chemoprophylaxis (trimethoprim 2 mg/kg once daily) in all newborn patients with spina bifida are started immediately after closure of the back (verpoorten buyse 2008). this practice ensures safe pressures in the lower urinary tract in most of the patients with spina bifida at that age. in doing so, bladder volume and compliance remain satisfactory for years in most patients (verpoorten & buyse 2008). between the first 8–9 years of life, parents and other caregivers carry out cic but if the children show sufficient dexterity, they take up the task themselves after this age (verpoorten & buyse 2008). after birth, cic is carried out with self-lubricating 8-f catheters (verpoorten & buyse 2008). the size of the catheter depends on the patient’s age; the aim is always to use the largest possible catheter to obtain optimal bladder emptying. oxybutynin is best started together with cic immediately after the closure of the back (verpoorten & buyse 2008). some basic principles encompassing proper education and training, clean and atraumatic application and long-term achievement of good patient compliance are emphasised by rehabilitation practitioners (verpoorten & buyse 2008). in east and southern africa, long-term outcomes are maintained by ensuring mothers or caregivers are trained on how to keep catheters clean for use and reuse to preserve kidney function (mertens & bannink 2012). while practicing cic, parental care for children aids in the success and achievement of the learning process for children diagnosed with spina bifida (waugh, brewer & wagoner 2022). not explored in detail are the barriers to practice and usage among children with spina bifida and their families in lmic settings. in this review, a summary of the evidence on the facilitators and barriers to the implementation of cic in children living with spina bifida is set out, specifically focusing on facilitators of usage, and the barriers affecting usage and practice of cic in lmic. the specific objectives are: to explore the barriers to the implementation of cic; to explore factors that facilitate the usage and practice of cic; and to identify possible recommendations for the implementation of cic in children with spina bifida in lmics. research methods and design the literature search focused on studies conducted between january 2004 and september 2023. the search was conducted in september 2023. following the scoping review strategy theorised by joanna briggs institute (jbi) in the 1990s, we explored the types of available evidence in a given field, clarified concepts in literature, examined how research is conducted on a certain topic, analysed knowledge gaps and identified key characteristics or factors related to a certain concept (munn et al. 2018). the jbi strategy we focused on included identifying the research question and relevant studies, selection, data charting, collation, summary and reporting of results, analysis of evidence, presentation of results, summary of evidence, reviewing and conclusion on the barriers and facilitators to cic in children with spina bifida and their families. search strategy in accordance with this strategy, potentially eligible articles were identified through pubmed, web of science and scopus databases. additional searches were conducted through google scholar and research gate. the focus was on lmics as defined by the development assistance committee (dac) list of official development assistance (oda) reporting (oecd 2022). the key search terms were: (‘spina bifida’)and (‘clean intermittent catheterisation (cic)’) and (‘lmics’) or (barriers to clean intermittent catheterization). a repeated advanced query search algorithm derived from the main themes: (‘spina bifida’) and (‘continence management’) and (‘kidney saving’) or (‘clean intermittent catheterization’) or (barriers to implementation of clean intermittent catheterization) generated 1995 search results fed separately across the different databases. the key search terms were ‘spina bifida’, ‘clean intermittent catheterisation’, ‘barriers to clean intermittent catheterisation’ and ‘facilitators to clean intermittent catheterisation’. when filtered with the search terms ‘spina bifida’ and myelomeningocele, continence management and barriers to continence management, lmics yielded 1,150 results. we reviewed both published and grey literature from the international federation of spina bifida and hydrocephalus (ifsbh) website and other sources focusing broadly on continence management in children with spina bifida and barriers to implementation of cic. three additional articles were included from grey literature (ifsbh website). after the removal of duplicates, 223 results were included for title and abstract reviews. based on the abstracts and titles, we conducted a full-text assessment for eligibility and excluded 201 articles because they focused on spina bifida although without any mention of the barriers or facilitators of cic, resulting in 22 articles remaining for review. of the 22 articles, 12 full-text articles were excluded because of limited content in terms of barriers and facilitators to cic usage and practice. a total of 10 articles, from studies conducted in six countries, were included in the qualitative synthesis. the final studies, a total of 10 articles that were conducted in six countries were included in the qualitative synthesis. information sources and study selection the review process entailed gathering evidence-based information from primary data sources. the databases included pubmed, embase, scopus and google scholar. an excel sheet depicting search results was developed followed by logical identification and screening processes to indicate the criteria in terms of relevance for inclusion in this review process. study eligibility criteria the scoping review included scientific literature based on the nature of the study topic and thematic areas of facilitators and barriers of cic. the study topics were narrowed to the practice of cic in children with spina bifida, their families and caregivers. the focus of inclusion was also primarily on the barriers and facilitators of usage and practice of cic in lmics. the review excluded grey literature from articles published in non-commercial form including theses, dissertations and government ministry of health reports, fact sheets and pre-prints of articles on spina bifida. only sources written in english focusing on the barriers and facilitators of the usage and practice of cic were included. data charting and abstraction data were populated into an excel spreadsheet and analysed before extracting and summarising the data. the data abstraction table included the title of the abstract, author information, sample size and demographics and comments on the reviewed articles. the selected articles were checked, and approved by all authors, before inclusion. the preferred reporting items for systematic reviews and meta-analysis extension for scoping reviews checklist (prisma-scr) was followed (page et al. 2021). synthesis, summarising and reporting of findings the review results were thematically analysed, modulating one or general arguments for organising the review. interpretation of findings focused on emerging themes and patterns discovered as results were summarised. the synthesis of results connected the information reported by different sources and not just summarising the results. these also involved interpreting different patterns in the results of different studies aimed at organising them into both inductive and deductive themes. presentation of results we included studies that provided feedback on barriers and facilitators of cic among children with spina bifida. we found 1,153 articles focusing on barriers, facilitators and experiences in the usage and practice of cic in children with spina bifida, their families and caregivers. a total of 309 articles were excluded as duplicates, resulting in 844 articles that were then screened focusing on barriers and facilitators, and a further 621 article records were excluded because the studies lacked content that focused on the themes of the scoping review. after the screening, 223 abstracts and titles were assessed for eligibility. the description of the selection, screening, and inclusion of the studies is presented in figure 1. figure 1: flow diagram of literature search and screening. study characteristics the 10 studies were conducted in brazil (orlandin et al. 2020), morocco (kyal et al. 2018), south africa (page & coetzee, 2021), uganda (bannink et al. 2016a, 2016b, 2016c; bannink mbazzi et al. 2016; sims-williams et al. 2018), kenya (jeruto et al. 2004) and sudan (ibrahim et al. 2004). the study designs and methods included in the review are scoping review, prospective, descriptive and analytic, explorative qualitative research design, semi-structured interviews using psychometric scales, mixed methods and quasi-experimental. ethical considerations ethical clearance to conduct this study was obtained from the uganda virus research institute research and ethics committee (no. gc/127/985). in addition, research clearance was obtained from the uganda national council for science and technology. results this section presents in a thematic manner, the barriers and facilitators to the practice of cic among children with spina bifida and their caregivers. several barriers identified in the review inhibit the usage and practice of cic. the findings covered several themes including pain and discomfort, fear of catheter insertion, a lack of quality training, challenges to self-autonomy and independence in managing toilet activity limited access to medical care, and financial difficulties. others included a lack of facilities to practice cic, long and time-consuming process in practicing cic, difficulty in positioning and the lack of supplies to facilitate the cic management processes are key barriers. we describe the barriers by theme further in the text. barriers to usage and practice of clean intermittent catheterisation theme 1: pain and discomfort three studies conducted in brazil, morocco and sudan (ibrahim et al. 2004; kyal et al. 2018; orlandin et al. 2020) reported pain in catheter insertion among both male and female children as one of the main barriers to usage and practice. orlandin et al. (2020) reporting findings from brazil noticed that pain is a sensory and unpleasant emotional experience throughout the catheterisation experience in children with spina bifida (orlandin et al. 2020). pain inhibits the uptake of usage and practice of cic because of discomfort (orlandin et al. 2020). this was further suggested by lapides et al. (1972) in a study conducted in korea, the process of emptying the bladder 4–5 times a day was reported as painful and causing discomfort coupled with other challenges of storage, management and irrigation of the catheter. theme 2: fear linked to pain was fear. kyal et al. (2018) in their study conducted in morocco found that the fear of the cic technique affects long-term adherence, and often patients with spina bifida are afraid of catheters entering their bodies, causing pain and infections. kyal et al. (2018) expounded that after conducting the first session of therapeutic education to patients and their caregivers with spina bifida, the most pronounced barrier to the uptake of the practice was fear of catheterisation. in morocco, psychological aspects of the barriers to cic include being scared of harming children by causing infection or mistakenly breaking their hymen. in terms of practice, there was the fear of mistaking the vagina for urinary meatus (kyal et al. 2018). theme 3: a lack of quality training for children, parents, and caregivers four studies (ibrahim et al. 2004; jeruto et al. 2004; kyal et al. 2018; page & coetzee 2021) described the lack of quality training for children, parents and caregivers as a hindrance to the practice and management of cic processes. in morocco, kyal et al. (2018) found that external factors including limited quality of teaching, and the training environment are significant barriers to the usage and practice of cic (ibrahim et al. 2004). in south africa, page et al. (2019) reported that the lack of training to accommodate both adolescents and their caregivers on the practice and use of cic is a significant barrier (page & coetzee, 2021). in sudan, ibrahim et al. (2004) observed that a lack of proper training encompassing all major steps with hands-on local materials affects the uptake of the practice of cic (ibrahim et al. 2004). reporting findings from kenya, jeruto et al. (2004) found that no cic programme is complete in its follow-up after providing training, and patients are often lost for various reasons (jeruto et al. 2004). theme 4: challenges to self-autonomy and independence in managing toilet activity three studies (bannink et al. 2016b; kyal et al. 2018; page & coetzee 2021) conducted in morocco, south africa and uganda, respectively, described the challenges to self-autonomy and independence in managing toilet activity. in morocco, kyal et al. (2018) explored external factors including challenges in accessing public toilets, and the unavailability of appropriate catheters. furthermore, in south africa page and coetzee (2021), found that the challenges to self-autonomy and independence in managing toilet activity affect participation in cic among children with myelomeningocele (mmc) and spina bifida. page and coetzee (2021) noticed that as a result of the physical disability, access to toilet facilities and other infrastructure while practicing cic both at schools and homes is affected. in sudan, ibrahim et al. (2004) observed that the lack of access to public toilets inhibits the practice of cic. in uganda, bannink et al. (2016b) reported that to ensure independence, parents are required to be available and to closely support children to practice cic. table 1: studies included in the review. theme 5: limited access to medical care and financial difficulties three studies conducted in three countries (1) south africa (page & coetzee 2021), (2) kenya (jeruto et al. 2004) and (3) uganda (bannink et al. 2016b) reported that limited access to medical care and financial difficulties affect the usage and practice of cic. bannink et al. (2016b) found that in uganda the most stressful part of the daily life of children with spina bifida is finding social spaces and reliable areas to practice cic. page and coetzee (2021) reported that in under-resourced communities in south africa, limited finances inhibit children with spina bifida from accessing medical care making it hard to practice or use cic. similarly, in kenya, jeruto et al. (2004) posited that financial constraints hamper the processes to use and practice cic as simple materials and supplies can be prohibitive in cost for an average family of a child with spina bifida. jeruto et al. (2004) also observed that catheter and lubricant costs have been a problem for a majority of families in lmic. the study in kenya recommended simplifying cic as much as possible so that economically challenged communities can afford it. in south africa, page et al. (2021) reported that the lack of transport to rehabilitation centres to access medical care denies adolescents with spina bifida an opportunity to acquire knowledge and skills in practicing cic (page & coetzee 2021). theme 6: a lack of facilities to practice clean intermittent catheterisation three studies conducted in uganda (bannink et al. 2016b, 2016c) and sudan (ibrahim et al. 2004) reported a lack of facilities to practice cic as a hindrance to the uptake of the intervention among children with spina bifida and their families. in uganda, bannink et al. (2016c) noticed that the majority of parents practiced catheterisation although they complained practicing it outside the home and the rehabilitation facility was challenging. bannink et al. (2016c) also noticed that children hardly engaged in cic and reported that the practice interferes with their daily functioning because of a lack of facilities. in the ugandan school setting (bannink et al. 2016b), dirty latrines and a lack of space to practice cic or even to find water to clean up were challenging. bannink et al.’s (2016c) findings from uganda showed that the inability to find alternative facilities to catheterisation outside the home poses a barrier to carrying on the practice and usage in the everyday life of children with spina bifida. while homes were mentioned as better places to practice cic because of the availability of required resources like water, schools or other places were found to be difficult places to practice cic because of a lack of resources and privacy (bannink et al. 2016b). theme 7: the clean intermittent catheterisation process is long and time-consuming in practice three studies conducted in brazil (orlandin et al. 2020) and uganda (bannink et al. 2016a; sims-williams et al. 2018) mentioned that children expressed a concern that cic processes take a long time and can be hard to navigate. they preferred to use this time to play instead. sims-williams et al.’s (2018) findings from uganda found that children who were initiated into cic at an older age mentioned the lack of time to practice and use cic. orlandin et al.’s (2020) study in brazil, explored the perception of cic as a time-consuming procedure. during initial training and practice, patients with spina bifida in brazil perceived the process as time-consuming based on the time required for mastery of the procedure (orlandin et al. 2020). orlandin et al. (2020) observed that the routine of daily practice becomes burdensome to both patients with spina bifida and their parents/caregivers or families. theme 8: difficulty in positioning two studies conducted in kenya (jeruto et al. 2004) and morocco (page & coetzee 2021) mentioned that multiple internal (patient-related) and external factors are barriers to the practice of cic including physical disabilities encompassing positioning, dexterity and visual impairment to spot the urethra before insertion of the catheter. jeruto et al.’s (2004) findings from kenya showed that positioning is a requirement to perform cic either standing, lying or sitting and yet this is still a limiting factor in the usage and practice of cic especially among females. theme 9: a lack of supplies ibrahim et al.’s (2004) findings from sudan showed that the lack of supplies to facilitate adequate toileting practices especially inadequate shelves or countertops for placing supplies in preparation is a hindrance to the practice of cic (ibrahim et al. 2004). in sudan, the inability to access and acquire both local and imported supplies to foster the practice and management of cic is reported as a barrier to the uptake of the procedure (ibrahim et al. 2004). sims-williams et al.’s (2018) findings from uganda emphasised that, especially among older children with spina bifida, the practice of cic was abandoned because of a lack of catheters and distress. theme 10: perception of self, support, and care in uganda, bannink et al. (2016a) reported that children with spina bifida were concerned in terms of perception of self, support and care with the processes of managing cic even when their caregivers encouraged them to perform cic independently. while there were barriers to the usage and practice of cic expounded in this section, there were also facilitators to the usage and practice of the procedure discussed in detail in the next section of this review. facilitators to use and practice clean intermittent catheterisation the major themes identified as facilitators to usage and practice of cic included tolerance of infants in the uptake of cic fostering long-term adherence, the support from family and community members, quality of training and benefits of continuous practice of cic for long-term uptake and adherence. other facilitators included the utilisation of lubricants, reuse of catheters and other affordable materials to families available in the local communities and rehabilitation centre, family, peer and community support, availability of sufficient finances to access care, the neonatal institution of cic and follow-up of healthcare provision by rehabilitation workers. these themes are presented next. theme 1: tolerance of infants in uptake of clean intermittent catheterisation kyal et al.’s (2018) study from morocco observed that initiating catheterisation in infancy has been identified by caregivers as an ease of learning and adjustment. infants are more tolerant and technically easier to catheterise, unlike toddlers who are behaviourally more challenging because of their growth, development and self-awareness (kyal et al. 2018). the review also reports that in morocco, educating rehabilitation workers regarding cic facilitates their ability to concentrate and administer care for children based on set protocols. in morocco, it is further noticed that to facilitate adjustment to cic, it is important to utilise teaching methods focusing on the developmental and social maturity of a particular age or age group of children at the level of their understanding of the cic learning process (kyal et al. 2018). theme 2: support from family and community members a study conducted in uganda mentioned that sometimes when children with spina bifida in the school or community were challenged in the use of cic, they requested assistance from teachers or parents (bannink mbazzi et al. 2016). children with spina bifida are open to accessing support from individuals they trust and those who can help (bannink mbazzi et al. 2016). while it is considered difficult for patients to incorporate intermittent catheterisation in their daily lives in uganda, adjustment of social life and encouragement to practice cic at home facilitates the practice of cic as often patients with spina bifida are reminded of bladder emptying (bannink mbazzi et al. 2016). page et al. (2019) found that in south africa family support is an instrumental facilitator to the practice of cic among adolescents with spina bifida (page & coetzee 2021). the need for consistent attention from caregivers facilitates the correct usage and practice of cic (page & coetzee 2021). besides, quality family time fosters the desire to gain knowledge and share experiences of practicing cic (page & coetzee 2021). according to page et al. (2021) biological mothers are the pillars of guidance to children or adolescents practicing cic (page & coetzee 2021). bannink et al. (2016c) in their findings from uganda mentioned that the parent support system has a significant influence on the practice of cic. in uganda, the support of another adult in the household in the family to care for a child with spina bifida is instrumental in ensuring regular practice and usage of cic (bannink et al. 2016c). this support system has a significant contribution to improving parent–child interaction that extends to a lifelong understanding of the need to catheterise (bannink et al. 2016c). similarly, one of the studies also conducted in uganda by bannink et al. (2016) and colleagues revealed that support from siblings across a range of activities bolsters their confidence to practice cic and learn over time. bannink et al. (2016a) report that the peer-to-peer practice of cic encourages participation and instils confidence in children with encouraging results in continence management. in brazil, orlandin et al. (2020) posited that psychological support and regular follow-up of children and their families practicing cic are facilitators of long-term adherence. theme 3: training, quality of training and benefits of continuous practice of clean intermittent catheterisation through findings from uganda, bannink et al. (2016) noticed that children who continuously practiced cic had increased participation in daily activities both at home and in school. bannink et al. (2016c) found that the quality of the training environment for rehabilitation workers, parents and patients is a facilitator of the usage and practice of cic. page and coetzee (2021) in south africa highlight that patients with an overactive bladder were familiar with intermittent catheterisation after a few weeks of training. in south africa, the basis for their motivation to understand the cic management process is anchored on the expected results of bladder emptying (page & coetzee 2021). in sudan, ibrahim et al. (2004) observed that the frequency of cic training is determined by the patient’s ability to gain confidence in self-managing cic. the facilitators to usage and practice include the quality of teaching, supervision and follow-up in the community (ibrahim et al. 2004). in uganda, sims-williams et al. (2018) reported that the provision of cic training to children with spina bifida and their caregivers facilitates usage and practice (sims-williams et al. 2018). orlandin et al.’s (2020) findings from brazil showed that with practice and increasing confidence in cic usage, children with spina bifida may not require much more time than normal to pass urine. orlandin et al. (2020) also noticed that spina bifida patients in brazil were reported to be motivated to uptake cic once they knew the process would be long-term and they were positive on prospective outcomes of improving bladder functioning. in brazil, it is recommended that while providing training to parents and caregivers to facilitate the acquisition of knowledge and skills in managing cic, instructors should evaluate patients’ conditions and provide customised education (orlandin et al. 2020). among the brazilian children with spina bifida and their parents, the desire to achieve independence in dressing, bathing, toileting and skin care while practicing cic facilitates autonomy and a sense of belonging (orlandin et al. 2020). theme 4: utilisation of lubricants, reuse of catheters and other cost-effective materials orlandin et al. (2020) in a study with a brazilian population reported that lidocaine gel lubricant is widely used to lubricate the urethra and it is effective in reducing pain and sensitivity. in brazil, to reduce the risk of urethral trauma, promoting some urethral dilation and facilitating the introduction of the urinary catheter have proven beneficial (orlandin et al. 2020). orlandin et al. (2020) reported that to facilitate the reuse of urinary catheters and promote hygiene, several techniques are reported in multiple literature including putting the urinary catheter in boiling water, washing it in running water, storing it in a solution with vinegar, detergent or 70% alcohol or heating it in the microwave. in sudan, ibrahim et al. (2004) observed that the facilitators of usage are also premised on catheter availability in the community. similarly, bannink et al. (2016) reporting findings from uganda noticed that private donors funded cic and bowel management trainings including the provision of low-cost materials and follow-up of children with spina bifida at home. theme 5: provision of free supplies after training in uganda, caregivers who received training were provided a free supply of catheters and anticholinergic oxybutynin at every visit (sims-williams et al. 2018) fostering their support to practice of cic among their children in the communities. sims-williams et al. (2018) reported anticholinergic oxybutynin was administered intravenously, thus motivating caregivers and children with spina bifida to use and practice cic (sims-williams et al. 2018). theme 6: neonatal institution of clean intermittent catheterisation and the follow-up of healthcare provision by rehabilitation workers jeruto et al.’s (2004) research from the kenyan population recommended starting cic in the new-born period as it is easier to master by parents and is more acceptable to children as they grow. this study also points out that an aggressive approach with the immediate neonatal institution of cic has evidence of reducing the need for surgical procedures later in life (jeruto et al. 2004). jeruto et al. (2004) affirm that overcoming significant barriers and further parental education is needed to offer infants with spina bifida a good standard of care. in terms of healthcare provision by rehabilitation workers, bannink et al. (2016b) in their study from uganda noticed that the distinction between routine general health visits and visits to occupational or physiotherapists enables children to understand the role rehabilitation workers have in their lives. in uganda, bannink et al. (2016b) also found out that rehabilitation workers foster routine usage and practice of cic whenever they conduct home visits. theme 7: availability of sufficient finances in uganda, household income and overall parental support were reported as important key predictors to continence management (bannink mbazzi et al. 2016). in families with higher incomes, transport costs to rehabilitation centres is easily met to access supplies. in this case, parents are able to support their children to carry out cic several times in a day leading to improved quality of life, earlier better motor function and sufficient continence management (bannink mbazzi et al. 2016). discussion our study highlights the results of 10 studies reviewed on the barriers and facilitators in practice and usage of the cic among children with spina bifida and their families. while some of the barriers are manageable at the family and societal level, others are manageable at rehabilitation units and hospitals. the barriers include fear, pain and discomfort during catheter insertion, and a lack of quality training from rehabilitation experts for children, parents and caregivers. other barriers include challenges to self-autonomy and independence in managing toilet activity both at home and in schools. the articles also mentioned limited access to medical and rehabilitation care and financial difficulties, a lack of facilities to practice cic, the long and time-consuming processes of conducting cic, difficulty in positioning, a lack of supplies and a negative perception of self, support and care. to counter these barriers, facilitators from our review included the tolerance of infants in uptake of cic, support from family and community members. the provision of training, quality of training and benefits of continuous practice of cic also support cic. the utilisation of lubricants, reuse of catheters and other cost-effective materials facilitates usage and practice. other facilitators included neonatal institution of cic and provision of quality training, follow-up of healthcare provision by rehabilitation workers and lastly the availability of sufficient finances. our study found out that difficulty in positioning affects the detection of the urethra before insertion of the catheter and yet positioning facilitates the practice of cic. bolinger and engberg (2013) in a similar study conducted in the united states found that in females especially, positioning is a limiting factor, and often females require consistent practice with a patient trainer to enable them to grasp the key steps and processes in conducting cic. similarly, in the united states, bauer et al. (2023) postulated that other than physical barriers, psychological factors also affect adherence to usage and practice of catheterisation. these factors include misconceptions, fear and stigma of using a catheter to empty urine leading to infections. our study shows that outside the rehabilitation units, family, peer and community support are instrumental in facilitating the usage and practice of cic, and that the follow-up by rehabilitation workers strengthens the support to children with spina bifida. these results are inconsistent with the findings from a study conducted in a school environment in the united kingdom mentioning that there are no regular or local policies for cic, and overtime school staff, parents and health practitioners have experienced feelings of anxiety, concern and inadequacy because of a lack of knowledge on the programmatic steps to conduct cic (fishwick & gormley 2004). in the absence of strong policies to comprehensively manage cic, children’s school attendance, achievement and socialisation are affected. if there is limited rehabilitation staff knowledge and understanding of bladder problems, support to children in the school and environment is affected (fishwick & gormley 2004). our findings posit that the availability of cost-effective materials and reusable items facilitates the use and practice of cic. previous studies have shown that the reusable aspect of low cost materials with or without lubricants facilitates practice for children with spina bifida irrespective of the scientific knowledge behind the technique (bogaert et al. 2004; mazzo et al. 2017). our study found that practicing cic is time-consuming and thus affects participation in other daily activities of life. in a related study conducted in uganda, it is further noticed that the children experienced extensive urine leakage and were worried that they would miss out on leisure time in school as a result of failure to regulate the time and frequency of toilet visits affecting their practice of cic (bannink et al. 2015). our study reveals that the practice of cic interferes with the daily functioning of children and parents are often required to be close to children at home, community and at the rehabilitation centres as monitors. contrary to grey literature from ifsbh (bauwens 2014), the review did not show any negative perceptions of illustrations and pictorials used during cic trainings or negative responses from parents on the use of cic. in addition, sociocultural perceptions, myths and misconceptions, stigma and discrimination, and improper handling of catheters as listed by ifsbh (bauwens 2014) are likely to play role but did not come out strongly from our literature review. in our review it was found that it is important to initiate cic at neonatal stages (from birth to 4 weeks) as it is easier to master by parents and it becomes more acceptable to children as they grow. the finding of the study on the neonatal institution of cic underpins the fact that infants are more tolerant and technically easier to catheterise and it is important to start cic as early as possible. this is subsequently a prerequisite to save the kidneys of new-borns. in a similar study, it is mentioned that it is important to consider age and other factors while initiating cic (herbert, welk & elliott 2023). it is expressed that age alone is not an internal barrier that children with spina bifida face but rather children between 2 and 17 years of age were able to self-catheterise; others even performed cic independently at the age of 9 (herbert et al. 2023). similar findings also underpin that spina bifida patients were reported to be motivated to uptake cic once they knew the process would be long-term and they were positive on prospective outcomes of improving bladder functioning (cobussen-boekhorst et al. 2016). the basis for their motivation to understand the cic management process is anchored on the expected results of bladder emptying (cobussen-boekhorst et al. 2016). none of the studies in this scoping review mentioned aspects around post-discharge management after surgeries or after attending services at rehabilitation centres and yet jaquet et al. (2009) postulate that there is evidence of poor follow-up of set appointments and instructions by families and caregivers as required by the health or rehabilitation workers and patients who access cic services. other studies reason that families and patients with spina bifida experience crisis reactions adversely affecting their performance especially after being informed of the news of potentially having to carry cic as a lifelong process (jaquet et al. 2009). to manage post-discharge challenges, cic is recommended to be carried out in the presence of a caregiver without which, there is difficulty in the follow-up of the practice and usage of cic especially when children with spina bifida are in environments outside the home such as at school (lim et al. 2016; vaidyanathan et al. 2011). limitations while the team searched the literature exhaustively within the scope and objectives of the study, there may have been further unpublished grey literature that we may have not included. country reports and other grey literature could have provided insights and evidence on barriers and facilitators but the search was limited to hand-search of the initially included sources such as pubmed, scopus or google scholar. we also note that the study protocol was not registered and is a limitation, but we do understand that reviews that commence with a detailed protocol, registered or not, do meet the requirements of reporting bias and transparency. we also limited our search to studies published in english and may have missed other relevant articles for inclusion. the literature search period could have also limited access to other relevant publications by the objectives of the scoping review. with the network created in the management of cic, experts from rehabilitation partners (majorly funded by child-help international) were consulted. we consulted experts including neurologists, occupational therapists, urologists, orthopaedic surgeons and social workers. while this is so, these experts were not involved in review of selected articles. we believe their input could have been valuable in providing insights and recommendations on the topic. recommendations training and capacity building this review shows that training and capacity building provided by rehabilitation workers on catheterisation to both children and caregivers is instrumental in ensuring continence. the knowledge and understanding of caregivers, children and parents are centre-stage in ensuring the uptake of the practice of cic. the rehabilitation workers should provide training to children with spina bifida, acclimatise them to the daily routines of practicing cic and provide age-appropriate rationale for the need to practice cic as they grow. in order to strengthen the management of cic, it is important to coordinate and monitor family, peer and community support for effective implementation. overall, lobbying for the provision of supplies, training and finances is fundamental in providing children assurance of long-term management of incontinence. utilisation of cost-effective materials in practical terms, the utilisation of cost-effective materials and reusable items in low-income countries provides alternative solutions that promote continence in children with spina bifida. it is recommended to initiate cic at neonatal stages (from birth to 4 weeks) so parents can carry on the process and initiate their children to cic as they grow. strengthening community-based rehabilitation and community-based inclusive development initiatives the rehabilitation centres should strengthen community based rehabilitation (cbr) initiatives geared towards empowering children with spina bifida and their families to overcome physical and sociological barriers in the communities in which they thrive. community based inclusive development (cbid) on the other hand should be strengthened so that children with spina bifida and their families make informed decisions on practicing and the implications it has on continence management and ultimately kidney saving. in the global discourse, the study recommends positioning challenges, barriers or inhabitants to functioning and health among persons with disabilities as a priority for advocacy for holistic support. the world health organization and government ministries in lmics should rally support towards providing easily accessible information including the limitations children with spina bifida and their families face. a global agenda towards management of ntds with significant efforts in managing the barriers to the practice of cic is paramount in fostering holistic functioning among children with spina bifida. collaboration among stakeholders and encouraging early initiation of cic among children the review recommends collaboration with healthcare providers, families and support networks to pioneer strategies to streamline cic practice both at home and in the community. we do recommend that the early initiation of children in cic instils confidence, fosters independence and improves long-term health outcomes. conclusion the research evidence in low-income countries on the barriers and facilitators of the cic explored in this review presents the gaps and opportunities to improve the management of cic in children with spina bifida and their families. within the family, children can be supported to practice cic even if physical and psychological barriers are at play. the rehabilitation practitioners, children and caregivers can interweave knowledge acquisition, usage and practice of cic by embracing the usage of low-cost materials to facilitate bladder emptying. the role that continuous training and practice plays is fundamental in encouragement of long-term adherence to cic and other continence management practices. it is also beneficial to utilise simple and practical steps in managing cic while providing trainings. acknowledgements the authors are grateful for the efforts of the colleagues and staff at the disability research group (drg) of the mrc/uvri & lshtm uganda research unit for providing insights and positive criticisms that shaped the results of this scoping review. they also acknowledge funding support from child-help international and the bo hjelt foundation. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions d.n. undertook the conceptualisation of the review, developed review questions, assisted with the methodology and conducted the analysis, write-up and revisions for the review. a.s.s. provided oversight support in the selection of the study articles for inclusion in this review. f.b.m. and j.s. provided supervisory roles and were involved in reviewing the concept, methods, analysis approaches and the overall write-up of the review. funding information child-help international and the bo hjelt foundation funded the study. 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‘“the world is not only for hearing people – it’s for all people”: the experiences of women who are deaf or hard of hearing in accessing healthcare services in johannesburg, south africa’, african journal of disability 10(0), a800. https://doi.org/10.4102/ajod.v10i0.800 project research number: sta_2016_26 original research ‘the world is not only for hearing people – it’s for all people’: the experiences of women who are deaf or hard of hearing in accessing healthcare services in johannesburg, south africa khetsiwe p. masuku, nomfundo moroe, danielle van der merwe received: 11 sept. 2020; accepted: 26 may 2021; published: 20 july 2021 copyright: © 2021. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: despite legal and adopted frameworks purporting access to healthcare and rehabilitation services, which are both a human right and key to developmental issues, women who are deaf and/or hard of hearing (hoh) are still excluded and experience barriers when accessing healthcare services. largely, this is attributed to communication barriers between healthcare professionals and women who are deaf and/or hoh. there have been limited research studies carried out on women with invisible disabilities, such as deafness, especially amongst african women. objectives: this study sought to gain insights into the communication experiences of women who are deaf or hoh when accessing public healthcare services in hospitals in johannesburg. methods: a qualitative research study employing semi-structured interviews with 10 african women who are deaf and/or hoh residing in johannesburg, south africa and attending government healthcare facilities was conducted. participants were purposively selected. data were analysed using thematic analysis. results: data revealed the following themes: communication barriers resulting in compromised quality of care and infringement on participants’ right to confidentiality; accommodation that is not accommodative and negative attitudes of healthcare professionals. conclusion: the findings of this study confirm the alienating, exclusion, marginalisation, discrimination, invisibility, lack of independence and autonomy of women who are deaf and/or hoh when accessing healthcare services. therefore, this study argues for a need for the conscientisation of healthcare professionals on communication needs of persons who are deaf and/or hoh. this has implications for the implementation of training programmes that will address communication, reasonable accommodation and attitudes of healthcare professionals. keywords: access; healthcare; women; deaf; south africa. introduction enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being (kuenburg, fellinger & fellinger 2016:1). however, this is not always the case for black deaf women globally. the world health organization (who) maintains that access to healthcare and rehabilitation services are both a human right and key to development issues (world disability report 2011). relatedly, the south african constitution also states that all people living in south africa have the equal right to accessing healthcare services and should not be discriminated against on the basis of their language, gender, race or disability (gutto 2001). in 2007, the south african government ratified the united nations convention on the rights of people with disabilities (crpd) (flynn 2011), emphasising its commitment to ensuring that the rights to access to healthcare for persons with disabilities are upheld and secured. as a means of operationalising the crpd, the south african government enacted the white paper on the rights of persons with disabilities (department of social development 2016). the mandate of the white paper on the rights of persons with disabilities was the removal of discriminatory barriers that perpetuate the exclusion and segregation of persons with disabilities in all spheres of society, including access to healthcare services (department of social development 2016). access to health care the south african department of public service administration (2009) defined access as all people having equal opportunities and availability of services or products from which they can benefit, regardless of their social class, ethnicity, background or physical disabilities. the concept of ‘access’ is strongly tied to the concept of human rights (south african department of public service administration 2009). south african department of public service administration (2009) further stated that accessibility also speaks to physical aspects of being able to access resources from public facilities or being able to work in public facilities without experiencing any barriers regardless of mobility and sensory impairments. different authors have presented different dimensions of access, for example, penchansky and thomas (1981) posited that access is optimised when the following dimensions are accounted for: accessibility, availability, acceptability, affordability and accommodation. peters et al. (2008), however, argued that in order for access to be achieved, availability, acceptability, geographical accessibility and financial accessibility need to be considered. according to the department of public service (2009), access is defined according to the following aspects: availability which relates to access to the physical environment, affordability which is economic access, and acceptability which relates to socio-cultural access of services that meet a minimum standard equality. whilst there are numerous definitions of access to healthcare, there is consensus that access to healthcare encompasses the availability of services at the particular time they are needed. healthcare is not easily accessible to the majority of south africans, and legislation does not guarantee that human rights will be upheld (meyer 2010). in order to substantiate this argument, meyer (2010) highlighted the inequalities in the service delivery between public and private healthcare facilities. pieterse (2014) also attested that the majority of the south african population is subjected to an overburdened, understaffed, underequipped and under-resourced public healthcare system. despite all the policies and legislation implemented to address these challenges, access to healthcare services for marginalised and vulnerable groups remains a challenge, particularly for persons with disabilities in developing countries (eide et al. 2015; vergunst 2016; world disability report 2011). both internationally and locally, there is a plethora of literature documenting barriers to accessing healthcare experienced by persons with disabilities, specifically in the lowand middle-income countries (lmic) (ali et al. 2013; eide et al. 2015; harris et al. 2020; varela et al. 2019; vergunst 2016; vergunst et al. 2015; vergunst et al. 2017). these barriers include poor staffing (masuku 2020), inadequate training of healthcare professionals (world disability report 2011), lack of budgets for provision and maintenance of assistive devices (matter & eide 2018), transportation challenges and costs (gudlavalleti et al. 2014; masuku 2020; syed, gerber & sherp 2013), negative attitudes of healthcare professionals (masuku 2020; moroe 2014; vergunst 2016; world disability report 2011), physical access (vergunst et al. 2015), communication barriers (kritzinger et al. 2014; masuku 2019; moroe & de andrade 2018a, 2018b) and gender inequalities (evans et al. 2001; groener 2013). the challenges of accessing healthcare services are exacerbated, particularly for women living in patriarchal societies (howell, chalklen & alberts 2006; shastri 2014; smith, braunack-mayer & wittert 2006; verdonk, mans & lagro-janssen 2006), and further compounded in women who are deaf. ubido, huntington and warburton (2002) lamented that women who are deaf do not have an equal access to healthcare services because of a variety of barriers, which are not only on the basis of their gender and disability but also on the basis of language oppression. the source of these challenges is rooted on ‘acceptability’, which relates to socio-cultural access of services that meet a minimum standard equality, what kritzinger (2011) terms the ‘attitude’ of healthcare professionals and the hearing community. deaf women face communication barriers when interacting with hearing healthcare professionals, which, in turn, results in inadequate service delivery and poor access to much needed services. deafness in south africa historically, people who are deaf have been marginalised and discriminated against both internationally and locally (tye-murray 2009). one of the reasons for this marginalisation potentially stems from the fact that deafness in itself is an invisible disability (tye-murray 2009). hence, it is often silenced, unrecognised, ignored and even forgotten by the hearing community (mcdougall 2006; purcell 2014). power and leigh (2003) and napier (2002) argued that deafness is primarily a ‘communication disability’, meaning if deaf people were provided access to information and means to communicate with the hearing community, they would not be regarded as having a disability. despite the many studies lobbying for the formalisation of south african sign language (sasl) and interpreting services for deaf people in south africa (aarons & akach 2002; beukes 2009; glaser & van pletzen 2012; moroe 2014; reagan 2008; selzer 2010), sign language is not yet afforded the same status as other languages spoken locally (morgan, glazer & magongwa 2016). according to magongwa, approximately 500 000 deaf people use sign language in south africa. haricharan et al. (2013) argued that the rights of south africans who are deaf are violated when their communication needs, including the need for a professional sasl interpreter, are neglected. because of the unavailability of healthcare professionals who are able to communicate in sasl and qualified sasl interpreters, deaf people cannot exercise their independence in accessing healthcare services, and consequently, they are left to depend on their family members or people waiting in the queue to help them (heap & morgan 2006). aarons and akach (2002) acknowledged that in south africa, deaf women are a minority and are marginalised, with black women being the most marginalised of all. currently, there are a dearth of studies that have been carried out on the experiences of south african deaf women to access healthcare services. reportedly, persons with disabilities in south africa generally lack access to or knowledge of basic health and social services (barratt 2007). globally, research studies have focused primarily on ‘first world’ contexts rather than on deaf women in underprivileged communities. in fact, there is a plethora of literature documenting the experiences of persons with disabilities; however, there are a dearth of studies on the experiences of black deaf women in accessing healthcare services amongst other things. chapple (2019) aptly lamented that black deaf women are largely understudied, and their voice is almost invisible in all areas of scholarship. this author premises that when talking about the lived experiences of black deaf women, fundamentally, intersectionality plays a significant role, in that, intersectionality brings to the fore the ways marginalised identities interact to shape multiple dimensions of personhood and social location. for marginalised groups, intersecting identities are realised in terms of race, gender, class, sexuality and disability, and often, these manifest simultaneously (chapple 2019). in the case of deaf women, three identities are at play-race, gender and disability. deafness crosses the barriers of gender, ethnicity, age, and economic status (sporek 2014), thereby placing deaf women, more specifically black deaf women (chapple 2019) at a risk for marginalisation. consequently, chapple (2019) asserted that in disability scholarships, black deaf women are often excluded, and when they are included, only one or two of the three identities are focused on. attesting to the exclusion of black deaf women in disability scholarship, in sub-saharan africa (ssa), there are a dearth of studies on the lived experiences of such women. a quick literature search on the inclusion of these women (assumed as not categorically expressed) revealed six studies, four of which have been conducted in south africa. the first study by ismail and henderson (2014) investigated the experiences of social exclusion amongst young deaf adults, particularly their beliefs and perceptions of human immunodeficiency virus/acquired immune deficiency syndrome (hiv/aids). primarily, this study focused on young deaf adults; however, there was a deliberate effort to include young deaf women, as out of 92 participants, 48 were female. the second study by senne (2016) highlighted black deaf women’s lived experiences of their constitutional rights in south africa. in this study, senne (2016) discussed intersectionality as denoting the ways in which race and gender interact to shape the multiple dimensions of black women’s employment experiences. true to the observations by chapple (2019), senne (2016) focused on two identities – race and gender. the last four studies by gichane et al. (2017), senayah et al. (2019), and adigun and mngomezulu (2020) addressed access to healthcare services for women, although senayah and kritzinger included males in their studies. gichane et al. (2017) and adigun and mngomezulu (2020) documented pregnancy experiences of deaf women. specifically, gichane et al. (2017) explored the utilisation of maternity services and pregnancy outcomes amongst deaf women in cape town, south africa, whilst adigun and mngomezulu (2020) explored the experiences and satisfaction of pregnant deaf women with antenatal care in nigeria. senayah et al. (2019) focused on accessibility of healthcare services by young deaf adolescents in ghana. kritzinger et al. (2014) explored other factors that potentially hamper access to healthcare services for deaf people. whilst these studies are not concerned with intersectionalities, save for the study senne (2016), they, however, focused on the fundamental right – access to healthcare for women with disabilities. this is the focus of the current study, access to healthcare services for deaf women in johannesburg, south africa. even in these developed country contexts, there is still a call to provide better access to primary care for persons with deafness (emond et al. 2015). across the world, particularly in the developing country contexts, there is, therefore, a need for identifying the requirements of deaf women and commit to integrate their needs into primary health systems as proposed by tomlinson et al. (2009). in the light of this need, this study, therefore, aimed at exploring the communication experiences of black deaf south african women accessing healthcare services at public healthcare institutions in gauteng. as such, this study aims to answer the following question: what are the communication experiences of black deaf and/or hoh when accessing public healthcare services methodology this study sought to gain insights into the communication experiences of women who are deaf and/or hoh when accessing public healthcare services in hospitals in johannesburg. in order to achieve this aim, a qualitative phenomenological research design was utilised to capture the lived experiences of a sample of these women. this is a qualitative research study that focuses on the insight, discovery and understanding from the participant’s perspective (merriam 2002) on a specific issue. a purposive sampling strategy was adopted because it allowed the researchers to collect a sample from a population who met the inclusion criteria of the study and were also accessible to the researcher (burns & grove 2009), thereby making it time and cost-effective (yin 2016) and feasible for both the researcher and participants. for inclusion in this study, participants had to be women who are deaf or hoh, who use public healthcare services and who were between the ages of 22 years and 50 years at the time of the study. this age range was chosen based on the assumption that women of this age are generally mobile, and thus, able to attend public health care facilities, and that they are likely to have a good understanding of their needs and expectations in terms of healthcare (de haan, dennil & vasuthevan 2005). subsequently, a sample size of 10 participants was recruited (table 1). whilst this sample size may be considered small, saini and shlonsky (2012) stated that for qualitative interviews, this sample size is sufficient. additionally, in this study, saturation was obtained by saunders et al. (2018). therefore, after the ninth interview, there was no new information from participants. table 1: participant profiles. data were collected through one-on-one, semi-structured interviews to gather information from participants who met the inclusion criteria mentioned above, and who have personal experiences, attitudes, perceptions and beliefs related to the topic of interest – access to healthcare services for woman who are deaf and/or hoh (dejonckheere & vaughn 2019). the interview questions were developed by the researchers and were deductive in nature, as they were based on available studies on access to healthcare services. interviews were conducted in english and sasl. the researcher was not fluent in sasl; therefore, services of two professional and registered sasl interpreters were enlisted. the first interpreter was available for one day only and conducted the first three interviews. consequently, a second interpreter was recruited and conducted the remaining interviews. taking into account that sign language is a visual language, as recommended by tye-murray (2009), the interviews were conducted where there was good lighting and away from background noise. for hoh participants, the researcher spoke naturally and clearly, and avoided covering her mouth whilst speaking. additionally, the researcher ensured that the interviewer and interpreter were facing the participant at all times during the interview. being cognisant of the importance of trustworthiness, although interpreting was performed by two different interpreters, these interpreters are professionals, meaning that they are aware of the rules governing their role as language brokers when interpreting. furthermore, all the interviews were conducted by the same researcher who also followed the same procedural checklist, thereby, minimising the possibility of compromising the integrity of the data collection process as two interpreters were used. interviews were conducted at deaf federation of south africa (deafsa) gauteng regional offices situated in the johannesburg central business district. deaf federation of south africa is a non-profitable organisation that acts as the national research, information and community action organisation on behalf of the deaf community in south africa. the individual interviews were conducted at the director’s office for confidentiality purposes. thematic analysis was used to analyse the transcribed data, which involved iterative reading of data to identify patterns and themes emerging from the data (braun & clarke 2013). iterative reading of data provides rich and multifaceted material that increases the rigour of the data (wells 2007). data were analysed using the steps recommended by creswell (2012). in order to ensure that the research tool generated appropriate findings, a pilot study was conducted, which is an initial, preliminary study conducted to analyse the feasibility of a study in order to improve the research design and refine aspects of the final study (yin 2016). a pilot study was conducted with the first participant who met the inclusion criteria and consented to participate. this study yielded no modifications to interview questions, thereby deeming the study feasible and did not warranty any refinement. as this study had a small sample size, the pilot study findings were included in the main study. the inclusion of pilot studies in main studies is supported by kim (2011), who maintains that in studies with small sample sizes, pilot studies may be included to augment the sample size of the main study. to address any bias or subjectivity in collecting, handling and analysing data obtained in this study, reflexivity and bracketing were applied. this was achieved by making use of a peer reviewer who assisted in reflecting on the interpretations and analysis of the data. peer debriefing or reviewing entails having regular meetings with peers who are not part of the research study in order to identify the researcher’s blind spots, information and results, which may have been missed by the researcher, and aspects of trustworthiness, which may have not been upheld accidentally (flick 2009). additionally, member checking was conducted after every interview to confirm that the interviewer captured the essence of what was said during the interview. table 2 reflects the themes and subthemes that emerged from data collected from interviews with participants. table 2: themes and subthemes from interviews with participants. ethical considerations ethical clearance to conduct the study was obtained from the department of speech pathology and audiology internal ethics committee (sta_2016_26). the following ethical considerations were exercised whilst conducting this study: all participants provided informed consent to participate in the study. confidentiality was ensured as participants’ information was kept anonymous and private. all identifying information of participants was removed from records. whilst anonymity was not guaranteed because of interviews being conducted at deafsa offices, in the final report, participant’s identifying information was removed as participants were assigned numbers to anonymise them. additionally, participants were not coerced into participating in the research study, and the researcher did not intrude on the participant’s time, space and personal lives (lichtman 2013). participants were informed that they could withdraw from the study any time without any penalties or negative consequences. discussion the findings of this study confirm the alienating, exclusion, marginalisation, discrimination, invisibility, lack of independence and autonomy of women who are deaf, which authors such as chapple (2019) and purcell (2014) have mentioned, albeit that these studies were not focused on access to healthcare services. it is evident from the study as well as from the literature that communication is the most prominent barrier to accessing healthcare services for persons who are deaf (chaveiro, porto & barbosa 2009; kritzinger et al. 2014; kuenburg et al. 2016; orrie & motsohi 2018). subsequently, communication barriers influence whether healthcare will be accessed by persons who are deaf (bentes, vidal & maia 2011). haricharan et al. (2013) further posited that communication barriers impede on the right to access as it is impossible to talk about the right to healthcare for persons who are blind without considering the imperative role of language in achieving this right. the extent of compromised patient care as a result of communication barriers between healthcare professionals and persons who are deaf is also captured in haricharan et al. (2013), where communication barriers resulted in informational gaps, which, in turn, had dire effects on the diagnosis, treatment and standard of care afforded to a woman who is deaf in western cape. communication challenges are a result of the gaps in sign language skills amongst healthcare professionals treating women who are deaf. the need for sign language training for healthcare professionals was confirmed in studies conducted by kritzinger et al. (2014), masuku (2020), orrie and motsohi (2018). orrie and motsohi (2018) specifically mentioned that the use of written notes and lip reading is a resourceful means of facilitating communication between healthcare professionals and persons who are deaf. richardson (2014) confirmed the use of written notes and lip reading as methods mostly used as means of communication between patients who are deaf and healthcare professionals; however, he highlights that these methods are unfortunately not effective. in particular, lip reading often presents with inaccuracies of speech reading (chaveiro et al. 2009; richardson 2014), with some persons who are deaf not even being able to lip read (orrie & motsohi 2018), whilst written notes were said to be time consuming and depended on the literacy levels of the patient (chaveiro et al. 2009). written notes, therefore, negatively influenced the confidence levels of women who are deaf who had low literacy levels (kritzinger et al. 2014). the use of an interpreter is a common practice and has been advocated for in cases where there is a language barrier between the patient and the healthcare professional (weiner & rivera 2004); for participants in this study, it did take away their autonomy and confidentiality, a finding that was collaborated by orrie and motsohi (2018). in order to migrate such challenges, it is advisable that healthcare professionals employ the services of a trained interpreter who is well versed with the culture and context, and who is signed to confidentiality (weiner & rivera 2004). an overwhelming majority of studies have reported on the negative attitudes of healthcare professionals towards persons with disabilities (badu, opoku & appiah 2016; devkota et al. 2017; khan et al. 2016; masuku 2020; shakespeare & kleine 2013). persons who are deaf, therefore, also experience these negative attitudes from healthcare professionals (orrie & motsohi 2018). healthcare professionals are reported to possess preconceived prejudices about persons who are deaf (orrie & motsohi 2018). as a result, healthcare professionals subject persons who are deaf to bad experiences in healthcare facilities. one of the bad experiences include the calling of patients over voice, making it difficult for them to know when it is their turn (ubido et al. 2002). this practice by healthcare professionals is unfortunately interpreted by persons who are deaf as being ignored. conclusion this research study sought to explore the communication experiences of deaf south african women accessing healthcare services at public healthcare institutions. the evidence gathered from this study confirms that black deaf women experience communication difficulties when accessing healthcare services, a basic human right. these communication challenges unfortunately have clinical and ethical implications on the standard of care that is received by this population when they visit healthcare facilities. they further create a sense of isolation and discrimination by the healthcare community amongst black women who are deaf and those who are not deaf. these findings have implications for policymakers, as well as the healthcare professionals who interact with these women. therefore, there is a need for evaluating the efficacy and the effectiveness of the policies and legislation concerned with access to healthcare for persons with disabilities in south africa. there is, furthermore, a need to advocate for disability training programmes that should be rolled out in healthcare facilities to educate healthcare professionals on specific disabilities and also provide practical strategies to ensure an environment that facilitates reasonable accommodation for persons with disabilities. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this research article. authors’ contributions k.p.m. was involved in the conceptualisation of the manuscript and was also involved in the methodology, analysis of data, writing up of the manuscript and reviewing and editing. n.m. supervised the project and was also involved in conceptualisation, methodology, analysis and writing up. d.v.d.m. collected data and was involved in writing the initial draft. funding information the research work received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability all data related to the project are available. there is no restriction of data. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references aarons, d. & akach, p., 2002, south african sign language: one language or many?, cambridge university press, cambridge. adigun, o.t. & mngomezulu, t.p., 2020, “they forget i’m deaf”: exploring the experience and perception of 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93–101. world health organization, 2011, world report on disability, world health organization, geneva. yin, r.k., 2016, qualitative research from start to finish, 2nd edn., the guilford press, new york, ny. abstract introduction conclusion acknowledgements references about the author(s) clifford odimegwu department of demography and population studies, faculty of social sciences, university of the witwatersrand, johannesburg, south africa obasanjo a. bolarinwa department of demography and population studies, faculty of social sciences, university of the witwatersrand, johannesburg, south africa department of public health, york st john university, london, united kingdom yusuff adebisi department of education, college of social science, university of glasgow, glasgow, united kingdom citation odimegwu, c., bolarinwa, o.a. & adebisi, y., 2025, ‘measuring and addressing violence against women with disabilities in africa’, african journal of disability 14(0), a1576. https://doi.org/10.4102/ajod.v14i0.1576 opinion paper measuring and addressing violence against women with disabilities in africa clifford odimegwu, obasanjo a. bolarinwa, yusuff adebisi received: 05 sept. 2024; accepted: 23 jan. 2025; published: 24 feb. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract violence against women with disabilities (vawds) in africa is a significant issue, with women facing higher risks of domestic, sexual and gender-based violence. however, data on vawd are scarce, hindering effective policy development. challenges include the lack of disaggregated data by sex and disability, methodological gaps and the absence of culturally relevant measurement tools. common tools such as the washington group short set on functioning often miss important nuances. to improve data accuracy, integrating comprehensive disability measures into national surveys and developing context-specific tools are essential. accurate data are crucial for creating policies to reduce violence and protect women with disabilities in africa. keywords: violence; women with disabilities; africa; data collection; sexual health rights. introduction the issue of violence against women with disabilities (vawds) in africa demands urgent attention. globally, over 600 million people live with disabilities, with 80 million residing in africa (african studies centre leiden 2024). among these, women and girls with disabilities face a significantly higher risk of violence. studies both in africa (chirwa et al. 2020) and globally (dunkle et al. 2018) reveal that women and girls are twice as likely to experience domestic violence and other forms of sexual and gender-based violence when you compare to those without disabilities. discrimination, stigma and restrictive social norms amplify the vulnerability of women with disabilities to violence and complicate efforts to collect accurate data. a recent world health organization (who) report (who 2024) stresses the importance of examining these issues to improve the measurement and understanding of vawd in africa. data on vawd in africa are scarce and often lack the necessary detail to inform effective policies and interventions compared to high-income countries, such as the united states and the united kingdom, which have institutionalised systems for collecting detailed, disaggregated data on violence against women, including those with disabilities. for example, national surveys such as the national crime victimization survey (ncvs) and the crime survey for england and wales (csew) routinely collect comprehensive data, providing insights into the prevalence, types and circumstances of violence (bureau of justice statistics 2020; office for national statistics 2021). in contrast, many african datasets and national surveys do not disaggregate data by sex and disability, leading to significant underestimation of the prevalence and impact of violence against women with disabilities. to improve data availability, it is essential to integrate comprehensive disability measures into national surveys and ensure that data collection processes are inclusive and accessible. similarly, several methodological issues hinder effective vawd measurement. an additional problem is the lack of standardised definitions and tools for measuring both violence and disability. many studies do not specify the forms of violence assessed, and when they do, they often omit disability-specific types, such as denial of care or withholding assistive devices. tools such as the washington group short set on functioning (who 2024), while widely used, have limitations in sensitivity and scope, often missing mild to moderate disabilities and participation domains (bolarinwa, odimegwu & adebisi 2024). another significant challenge is the lack of measurement tools tailored to africa’s unique cultural, social and economic contexts. this absence results in data collection that may lack accuracy and relevance, ultimately hindering effective interventions and policies. to obtain accurate data on women’s experiences in africa, it is imperative to address methodological shortcomings by adopting good practices. data collection instruments should be chosen based on research purpose, feasibility and specific needs. tools such as the who disability assessment schedule and the functioning and disability disaggregation tool could offer more details (who 2024). developing context-specific measurement tools for africa is crucial. surveys should address barriers women with disabilities face in reporting violence and include diverse perspectives. adequate training for survey teams is essential to ensure ethical, safe and accessible data collection. this approach ensures women can participate without facing additional risks (sabariego et al. 2015). to contextualise the application of ideas expressed in this article, we underscore some recent examples. for instance, integrating comprehensive disability measures into national surveys, as demonstrated in the 2022 census conducted in south africa, which included expanded disability questions, demonstrates how comprehensive disability data can inform targeted interventions against violence (datafirst 2022; who 2024). contextualising measurement tools to reflect africa’s unique socio-cultural realities is essential, and locally adapted methodologies, such as community-based participatory approaches, have shown promise in improving the accuracy and relevance of data collection while empowering marginalised groups (chirwa et al. 2020). the challenges of reporting violence, often compounded by stigma and societal norms, require culturally sensitive strategies. however, engaging trusted community leaders and leveraging informal networks have been identified as effective mechanisms to enhance the participation of women with disabilities in violence surveys (bolarinwa et al. 2025; dunkle et al. 2018). furthermore, strengthening legislative frameworks supported by comprehensive disability-disaggregated data enhances the implementation and enforcement of laws designed to protect these women (who 2024). conclusion improving vawd measurement in africa requires addressing data availability, methodological issues and implementing best practices. inclusive, accessible data collection, paired with ethical considerations, is key to obtaining accurate data. this information is crucial for developing interventions and policies to protect women with disabilities, significantly reducing violence and advancing gender equality. by embedding these context-specific practices, this opinion article offers a roadmap for reducing violence against women with disabilities and advancing gender equality across the continent. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions o.a.b. and c.o. conceived the idea. y.a. and o.a.b. drafted the article while c.o. supervised the process. the final version of the article was read and approved by all authors before submission. ethical considerations ethical approval to conduct this study was obtained from the university of the witwatersrand, human research ethics committee (no. h24/04/07) funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. the article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references african studies centre leiden, 2024, disability in africa, viewed 21 june 2024, from https://www.ascleiden.nl/content/webdossiers/disability-africa. bolarinwa, o.a., odimegwu, c. & adebisi, y.a., 2024, ‘leaving no one behind: addressing the sexuality of people with disabilities’, international journal for equity in health 23(1), 129. https://doi.org/10.1186/s12939-024-02219-y bolarinwa, o.a., odimegwu, c., babalola, b.i. & mohammed, a., 2025, ‘a qualitative study exploring the sexual experiences of women with disabilities in lagos, nigeria’, sexuality and disability 43(1), 1–25. https://doi.org/10.1007/s11195-024-09881-8 bureau of justice statistics, 2020, national crime victimization survey (ncvs), viewed 16 january 2025, from https://bjs.ojp.gov. chirwa, e., jewkes, r., van der heijden, i. & dunkle, k., 2020, ‘intimate partner violence among women with and without disabilities: a pooled analysis of baseline data from seven violence-prevention programmes’, bmj global health 5(11), e002156. https://doi.org/10.1136/bmjgh-2019-002156 datafirst, 2022, south african census 2022, 10% sample, university of cape town, viewed 16 january 2025, from https://www.datafirst.uct.ac.za/dataportal/index.php/catalog/982. dunkle, k., van der heijden, i., stern, e. & chirwa, e., 2018, disability and violence against women and girls: what works to prevent violence against women and girls global programme, pp. 1–6, department for international development, london. office for national statistics (ons), 2021, crime survey for england and wales: domestic abuse, disability, and vulnerability, viewed 16 january 2025, from https://www.ons.gov.uk. sabariego, c., oberhauser, c., posarac, a., bickenbach, j., kostanjsek, n., chatterji, s. et al., 2015, ‘measuring disability: comparing the impact of two data collection approaches on disability rates’, international journal of environmental research and public health 12(9), 10329–10351. https://doi.org/10.3390/ijerph120910329 world health organization (who), 2024, measuring violence against women with disability, viewed 21 june 2024, from https://www.who.int/publications/i/item/9789240089563. abstract introduction research methods and design findings discussion conclusion acknowledgements references about the author(s) julia jansen-van vuuren school of rehabilitation therapy, faculty of health sciences, queen’s university, kingston, canada solomon dawud community based rehabilitation, university of gondar, gondar, ethiopia rosemary lysaght school of rehabilitation therapy, faculty of health sciences, queen’s university, kingston, canada beata batorowicz school of rehabilitation therapy, faculty of health sciences, queen’s university, kingston, canada heather m. aldersey school of rehabilitation therapy, faculty of health sciences, queen’s university, kingston, canada citation jansen-van vuuren, j., dawud, s., lysaght, r., batorowicz, b. & aldersey, h.m., 2023, ‘family quality of life and children with disability in ethiopia: the role of support providers’, african journal of disability 12(0), a1124. https://doi.org/10.4102/ajod.v12i0.1124 original research family quality of life and children with disability in ethiopia: the role of support providers julia jansen-van vuuren, solomon dawud, rosemary lysaght, beata batorowicz, heather m. aldersey received: 17 aug. 2022; accepted: 27 oct. 2022; published: 16 feb. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: family quality of life (fqol) is an important outcome for families of children with disabilities globally and provision of support is associated with enhanced fqol. however, fqol research primarily focuses on conceptualisation and measurement, and originates from high-income contexts despite the fact that most children with disabilities live in low-income countries. objectives: the authors examined how ethiopian disability support providers practically contribute to meeting the needs of families of children with disabilities to enhance fqol. method: building on a previous study exploring ethiopian families’ perspectives on fqol, the authors used an exploratory descriptive qualitative approach to interview various support providers. interviews were conducted virtually (because of the coronavirus disease 2019 [covid-19] pandemic) in english or with interpreting assistance. audio-recorded interviews were transcribed verbatim and analysed thematically. results: support providers affirmed what families had described as important for fqol – spirituality, relationships, self-sufficiency – and recognised their enormous support needs. they described various ways to support families – emotionally, physically, materially and informationally. they also expressed challenges and their need for support to meet families’ needs. conclusion: ethiopian families of children with disabilities need holistic support that incorporates spirituality, the whole family’s needs and disability awareness-raising. collaborative and committed engagement from all stakeholders is necessary to support ethiopian families to flourish. contribution: this study contributes to global understandings of fqol and describes practical approaches to support families of children with disabilities in an african context. the findings of this study highlight the influence of spirituality, relationships, self-sufficiency, poverty and stigma and the need for holistic support and disability awareness-raising to enhance fqol. keywords: family quality of life; families; children with disabilities; support providers; ethiopia; support; spirituality. introduction family quality of life (fqol) as a construct of interest with regard to disability has developed in recognition of the effect of disability on the collective family unit (brown, kyrkou & samuel 2016; samuel et al. 2012). zuna et al. (2010) defined fqol as ‘a dynamic sense of well-being of the family, collectively and subjectively defined and informed by its members, in which individual and family-level needs interact’ (p. 262). building on the theory and framework of zuna and colleagues, chiu et al. (2013) updated the fqol framework to emphasise family strengths as well as needs. according to this fqol theory, individual-member and family-unit factors interact with each other and support factors (at individual and family levels) within the context of systems, policies, programmes and societal values, to determine fqol and other child outcomes. research on fqol has primarily occurred in high-income contexts, even though globally, 80% of children with disabilities live in low-income contexts (united nations international children’s emergency fund [unicef] 2020). contextual values, norms and environments play a critical role in fqol; therefore, understanding fqol from specific cultures and contexts is crucial to developing a global understanding of fqol and providing appropriate support. in addition, fqol research originated with a focus on families of children with intellectual and developmental disabilities (idd) (brown et al. 2016), and this continues to comprise the majority of fqol literature. although these findings provide important insights into fqol, further research is needed with families of children with diverse abilities and backgrounds. family quality of life and support despite variable definitions of support in research literature, this study refers to support broadly as strategies and resources provided to families of children with disabilities to contribute to meeting their needs (aldersey 2012; chiu et al. 2013; kyzar et al. 2012). global research evidence highlights the positive association between fqol and support (boehm & carter 2019; kyzar et al. 2012; mora, ibáñez & balcells-balcells 2020; zuna, brown & brown 2014); however, researchers and practitioners need to better understand how the type and extent of support provision contributes to fqol. support from formal service providers that is strengths-based and family-centred with positive, respectful and trusting partnerships between families and professionals is crucial for promoting fqol (balcells-balcells et al. 2019; summers et al. 2007; vanderkerken et al. 2019). furthermore, informal support from family, friends and community is significant for enhancing fqol, and can be even more crucial for families in low-income contexts with limited professional providers (nuri, batorowicz & aldersey 2019). a recent scoping review on factors contributing to fqol in african contexts highlighted financial support, respite, transport and educational support for children with disabilities as well as employment support for parents as important for enhancing fqol (jansen-van vuuren et al. 2022). informational support around prognosis and care for their children, provision of rehabilitation and medical services, as well as emotional support from family and friends or professional counselling were also found to contribute to better fqol. however, fqol studies in african contexts confirm the overall inadequacy of both formal and informal support for families of children with disabilities (ajuwon & brown 2012; aldersey et al. 2017; jansen-van vuuren et al. 2021). further research is needed to understand how the provision of support can positively affect families of children with disabilities, especially in low-income settings. the current study whilst international fqol literature is growing, research remains primarily focused on conceptualisation and measurement; implementation of research findings, particularly around how to practically support families, is necessary (edwards et al. 2018; zuna et al. 2014). this is especially true in low-income countries where families often face overwhelming challenges with few social safety nets; they urgently need culturally relevant and accessible support. therefore, this study aimed to explore how local disability support providers can practically contribute to meeting the needs of families of children with disabilities (hereafter referred to as ‘families’) in ethiopia, thus enhancing fqol. prioritising ethiopian families’ conceptualisation of fqol rather than using fqol frameworks from vastly different contexts (i.e. high-income countries), this study builds on a previous study from families’ perspectives, described in more detail in an earlier publication. (jansen-van vuuren et al. 2021). based on this understanding of fqol, the authors sought to answer the research question – how can ethiopian disability support providers address needs identified by families and contribute positively to fqol? research methods and design study design the authors used an exploratory descriptive qualitative approach, appropriate for research in areas with limited previous research (hunter, mccallum & howes 2019). research team all the researchers were affiliated with universities in departments involving the fields of rehabilitation and community-based rehabilitation (cbr). although only one author (s.d.) was ethiopian, the research team all had prior experience working or researching in an ethiopian context. the first author (j.j.-v.v), at the time of the study a phd candidate, spent time in ethiopia in the region where data were collected, and received invaluable and ongoing input and guidance from ethiopian colleagues. with his insider knowledge of the local context, culture and language, as well as specific experience in cbr working with support providers and families of children with disabilities, s.d. coordinated recruitment and provided important insights throughout the research process including data collection, analysis and interpretation of findings. j.j.-v.v directed the research, conducted interviews and did initial data analysis and drafting of the manuscript, all of the authors contributed to the analysis and interpretation of findings and writing of the final manuscript. setting this study was based in gondar, northern ethiopia, following an earlier study with family members of children with disabilities in the same region. to ground their studies in an african context and to inform their interview guides, the researchers first conducted a scoping review to identify factors contributing to fqol in african contexts (jansen-van vuuren et al. 2022). subsequently, the authors explored the perspectives of ethiopian families to understand how they conceptualise fqol and their support needs (jansen-van vuuren et al. 2021). both studies highlighted spirituality as foundational to fqol. this is perhaps unsurprising with regard to ethiopia specifically as it is a deeply religious country with most of the population identifying as orthodox christian, followed by muslim, then protestant christian (cia 2022). the families also described both loving and supportive relationships as well as stigma and exclusion; stigma was another prominent finding in the scoping review. many families valued self-sufficiency (primarily through education and employment) as important for fqol, as well as having enough to help others. amidst their parenting responsibilities, poverty was a major challenge, and although families acknowledged the counteracting benefits of support, their overwhelming need for more support was undeniable. figure 1 provides a visual representation of these findings. figure 1: visual representation of family quality of life as described by ethiopian families of children with disabilities. study population and sampling strategy this study included participants who provided support in some capacity to children with disabilities (age 0–18) or their families, regardless of disability type. ethiopia has signed the united nation’s convention on the rights of persons with disabilities (uncrpd) and therefore, has legally adopted their broad definition of disability, including children with physical, mental, intellectual and sensory impairments which, along with environmental barriers, hinder their full participation (un 2006). the authors purposefully sampled for a broad range of participants with diverse roles with families, various educational backgrounds, and both male and female. hence, they used the term ‘disability support provider’ (hereafter, ‘provider’ or ‘participant’), to encompass the broad range of support provision, beyond specific services. data collection author s.d., who coordinates the university of gondar (uog) cbr programme, directed participant recruitment as he is familiar with local organisations and individuals who work with families. participants initially received a consent letter and information document to reflect on, outlining findings of our previous research of families’ perceptions of fqol (jansen-van vuuren et al. 2021). participants were invited to an interview through email or personal communication from the cbr office and the authors confirmed verbal consent prior to interviewing. because of coronavirus disease 2019 (covid-19), all interviews were conducted using zoom and lasted between 60 min and 90 min. the authors developed a semi-structured interview guide based on their previous studies. participants who chose to be interviewed at the cbr centre (more reliable internet access) received a modest remuneration for transport (300.00 ethiopian birr, approximately 5.50 usd). twelve participants chose to interview with an amharic interpreter, a skilled bilingual uog faculty member from the english department. all interviews were audio-recorded and transcribed verbatim. the authors were guided by ‘information power’ to determine data sufficiency rather than saturation (braun & clarke 2021). information power considers the study’s aim, sample specificity, established theory, quality of dialogue and analysis strategy, recognising that exploratory studies do not aim for a complete description but rather varied accounts of a new phenomenon (malterud, siersma & guassora 2015). data analysis the researchers based their data analysis on braun and clarke’s approach to reflexive, qualitative thematic analysis (braun & clarke 2006; braun et al. 2019), including familiarising themselves with the data, generating codes, constructing and revising themes, defining and naming themes, and finally writing the report as presented in this manuscript. however, after commencing inductive coding initially, they diverged slightly by sorting codes deductively into themes related to aspects of fqol derived from ethiopian families’ perspectives. the researchers recognised that using a theoretical framework deductively does not reflect a pure reflexive thematic analysis (braun & clarke 2022); however, this approach aligned with the research purpose to explore how providers can practically contribute to supporting fqol as described by families. the researchers also observed other inductive themes outside of this fqol framework. all included quotes are in english, either participants’ direct words or the interpreter’s translation of amharic responses (with light grammatical editing). trustworthiness to improve rigour the first author maintained a reflexive journal and audit trail, documenting the research process and reflecting on potential sources of bias, especially as a foreigner to the local context (annink 2017; resch & enzenhofer 2018). the authors were guided by ethiopian colleagues’ recommendations, particularly author s.d., in relation to data collection and analysis to ensure cultural sensitivity and feasibility. throughout the interviews the interviewer clarified comments that were unclear; however, they did not conduct member checks with participants after analysis, because of time and budget constraints and recognising that member checking is not always appropriate or necessary for all qualitative research (motulsky 2021). during data analysis, the authors used triangulation, where two authors independently coded several transcripts before discussing the findings to promote ideas and incorporate different perspectives. all authors discussed and provided feedback on the findings and written report. ethical considerations queen’s university health sciences and affiliated teaching hospitals research ethics board and the institutional ethical review board of the university of gondar provided ethical clearance prior to commencing the study: #6028643. findings a total of 18 participants were interviewed. five were affiliated with a university in rehabilitation, social work and special needs and inclusive education. four were affiliated with cbr as supervisors or coordinators (with prior fieldwork experience), three worked for government departments in labour and social affairs and women and children’s affairs offices, and two were government-employed special-needs education coordinators. another three participants worked with organisations of persons with disabilities (opds), and one with a non-profit charity. table 1 provides additional demographic details. table 1: demographic characteristics of study participants. most participants affirmed what families in our previous study had described as important aspects of fqol – spirituality, relationships (within the family and community), self-sufficiency – as well as the need for support to counter the many responsibilities and challenges that families face. beyond this fqol framework, participants shared their own challenges, frustrations and disappointments as they support families in an ethiopian context. incorporating and supporting spirituality all but one participant affirmed the centrality and significance of spiritual beliefs in ethiopian families’ lives. many highlighted how spirituality positively influences fqol e.g.: ‘i strongly believe that when families are faithful, when they have strong spiritual beliefs, they tend to support the children … this supports the family and helps the family to cope with the challenges.’ (014, female, opd) providers recognised the importance of respecting and building on spiritual beliefs and values to work with families and provide holistic support. one rehabilitation professional described how he counsels and encourages families by sharing how others cope through their spiritual beliefs. others spoke about drawing on families’ spiritual beliefs to promote acceptance and commitment to their children with disabilities: ‘what we do is to tell the mother to stay strong and keep on supporting the child so that god also supports the family’ (007, female, cbr). many participants believed that spirituality – specifically religious teaching – promotes inclusion, equality and value of children with disabilities, and should be encouraged. therefore, participants described religious leaders’ important influencing role: ‘… the teaching of the religious fathers has a positive influence, to see the children in a way we see children with no disabilities … there is a positive connection between the way the families treat the children and the teachings from the church and the mosque.’ (017, male, charity) a number of participants also described how families take their children to holy water in search of healing, seeing this as a positive aspect of spirituality. all participants acknowledged the negative effect of stigma and discrimination on fqol, often because of beliefs about spiritual causation of disability (e.g. god’s curse or punishment). participants described these negative beliefs as being predominantly cultural and because of limited disability-awareness, as opposed to being religiously founded: ‘in mosques or church … they teach there is no problem, please support [children with disabilities] … so there is no direct connection with a curse or sin … i think it’s culture, the problem that comes … they mix the cultural attitudes with the spiritual.’ (008, male, cbr) to counter these stigmatising attitudes, participants identified education and awareness-raising as one of their primary roles in supporting families: ‘… [we] give awareness to the parents about the cause of disability and it is not a spiritual problem’ (003, female, rehabilitation professional). religious institutions were sometimes a platform for such awareness-raising, for example, cbr workers taught about disability during church programmes. providers also described how, through building rapport and trust with families and gently guiding them, they can counteract negative disability beliefs. supporting relationships family relationships participants acknowledged family and social relationships within ethiopian culture as particularly crucial for families: ‘… in ethiopia, the social interactions are different from other countries, for example from europe or in western countries. family interactions are more highly valued in ethiopia … the life of one person depends on the other here.’ (002, male, rehabilitation professional) another participant stressed that stable, loving and committed family relationships are necessary for fqol: ‘the child who grows up with his mother and his father has an opportunity to develop positive social and psychological wellbeing in the family. and also there is a responsibility shared with the father and the mother in the family. so it has a positive contribution for the quality of life for the parents and also for the children with disability.’ (004, male, social worker) to nurture positive family relationships, participants described how education and awareness-raising are important, so families accept and appropriately support their children with disabilities. reassurance of support was one way to encourage acceptance. one therapist explained how acceptance was a prerequisite for families to properly engage in treatment: ‘… those who accepted [the disability] are usually less stressed, and they don’t wander here and there … those who do not accept their children’s disability or those who are looking for a quick fix or complete recovery, they may not accept what i’m telling them, or they may not accept my therapy.’ (001, male, rehabilitation professional) other participants explained the importance of educating families around communication approaches (e.g. sign language) to improve relationships. providers described many families as committed and loving towards their children. one cbr supervisor shared: ‘we sometimes challenge the mothers intentionally, whether they actually love their children or not … almost all of the mothers love their children. so they try their best to bring the children up on their own.’ (007, female, cbr) however, participants observed that many families also had low expectations of their children with disabilities, leading to poorer family relationships: ‘almost all mothers expect their children to grow up and support them … when they have to deal with disabilities, then they see no benefits in bringing them up because they fail to provide the support that the family expects … and the mothers also become desperate that these children would not be there for them as they grow old, so that’s a cause of discrimination.’ (015, female, government officer) participants described their role in advocating for the value and contribution of children with disabilities; one way was by highlighting successful role models. another participant explained the need to educate families about promoting their child’s function and independence by encouraging participation in household activities rather than being overly protective. many participants acknowledged that disability strained family relationships, often resulting in marital conflict or the father abandoning the family. providers described various approaches to restoring broken family relationships through counselling and mediation: ‘… our [cbr] fieldworkers, they know the families around the kebeles [smallest administrative units]. so we use them to negotiate, to deal between husband and wife … in addition to that we use priests and other elderly people that live around them, just to counsel both wife and husband.’ (008, male, cbr) in extreme cases, some participants were involved in court cases to ensure that fathers supported their children. holistic support was identified as important for strengthening family relationships and promoting fqol: ‘[previously] i was so focused on the medical part. i was not focused on their feelings or parents’ struggles … but now i’m more holistic and i even sometimes talk with parents, and i ask them what are their challenges and what they think about this …’ (001, male, rehabilitation professional) several participants also mentioned the importance of sibling relationships and how siblings can promote independence and the value and contribution of children with disabilities: ‘earlier the siblings used to pity the children with disabilities so that they didn’t allow them to do anything at home … but recently, siblings are supporting the children so that they become independent.’ (014, female, opd) however, providers did not elaborate on how they can support siblings or other family members specifically. community relationships community relationships were another key component of fqol for ethiopian families, and all participants confirmed this significance. participants described mixed relationships between communities and families: ‘most of the societies we work with are cooperative, they even help us in identifying these children with disabilities. but there are cases where the members of society discriminate against these families.’ (006, female, cbr) in some cases, community members seemed to have good awareness about disability (better than some disability workers). however, stigma and negative attitudes from the community were unanimously identified as a major barrier to fqol. participants acknowledged that changing negative societal attitudes is crucial for full participation: ‘… all children with disabilities need to be involved in every social participation in the community without any discrimination and isolation. but the reality is not that … the source of every change is attitude. if the attitude of the parents is changed and if the community attitude towards children with disabilities became positive … it would allow them to participate in every aspect in the community without any discrimination and isolation based on their impairment or disability.’ (004 female, social worker) participants described various ways they raise awareness and educate the community, as well as families, to improve relationships and acceptance of children with disabilities. however, they acknowledged, ‘… it’s an ongoing process. it takes time and we are working on that, and we are seeing improvements’ (015, female, government officer). specifically, providers discussed how they reach people using public platforms, including coffee ceremonies, marketplaces, hospitals, churches, and through community leaders and radio: ‘we use woreda [district consisting of several kebeles] and kebele meetings. and we also reach the community by using platforms created by the churches. and we also have focal persons.’ (016, male, government officer) several participants observed that education and literacy positively influence community attitudes towards disability. one approach to raise disability-awareness was by highlighting everyone’s vulnerability and promoting disability prevention: ‘… it’s important to work on attitudinal change because disability is imminent. we all are vulnerable. so at some time, at some point we might all become a person with disability.’ (012) providers also attempted to highlight the collective benefit of including children with disabilities for the country’s overall development: ‘… the community should change this [negative] perspective in order to allow those children with disabilities to be part of the community and work and contribute their skills and knowledge for the good of the community.’ (004, male, social worker) one participant mentioned that research is also important to supporting advocacy and changing negative attitudes as well as raising community awareness. participants described how they support families’ community integration. for example, several participants described the importance of teaching children with disabilities functional skills and basic hygiene to improve acceptance into society. one participant shared how they support families to protect children from harm in the community: ‘… the families try to protect and care for the children with disabilities, especially children who are older than 14 years … there was a child who was raped and impregnated by a school guard. so we teach the families to protect children with mental impairments, they work with us in protecting their children.’ (014, female, opd) in addition, providers explained how they promote peer-support particularly amongst mothers, which provides both practical (economic) and psychological and emotional support: ‘… we form groups of mothers having the same situation of having children with disabilities. we create a platform for them so that they discuss and share information about their children. sometimes mothers hide their children, thinking that their children have the worst case, but after they discuss amongst themselves, they happen to discover that there are even worse cases, worse than theirs.’ (006, female, cbr) supporting self-sufficiency nearly all participants agreed that most families are hardworking and committed; they strive to be self-sufficient, and they value education and employment to achieve this, but they require support. one participant acknowledged the risk of cultivating dependency in providing support, but found that this is uncommon. education of children with disabilities although the situation is improving, many participants recognised that children with disabilities need more support for school participation, benefiting the child as well as the whole family. stigmatising attitudes at home and school remained a barrier for school participation: ‘first of all there is a problem. starting from the mothers, they don’t have knowledge whether the kids can go to school and be taught or not. and the second [problem] is they don’t believe the kids can be taught and get knowledge and will be normal … the third [problem] is that there aren’t any schools which include them.’ (003, female, rehabilitation professional) particularly in rural areas, many families are farmers, prioritising physical labour necessary for survival, over their children’s education and academic learning. in addition, parents often do not have the time, capacity or resources to take their children to school or support them at school when they need to work long hours in the fields or in other low-paying jobs (e.g. baking injera [traditional flat bread], washing and cleaning for wealthier families). providers described how, through dedicated awareness-raising and advocacy, more children with disabilities are now attending schools: ‘before we started the programme, there were many children who were deprived of the right to go to school because the families and the neighbours used to believe that the deaf, the blind, and children with any sort of disability cannot learn. we have worked closely with the families and the society, and we have also tried to put these children in school ourselves by consulting with the families.’ (006, female, cbr) another awareness-raising approach was celebrating special days such as children with disabilities day. again, participants shared how highlighting successful role models encourages families to educate their children: ‘some of the families have witnessed that some children with disabilities have succeeded in their education and they have also been recruited and are doing well in their jobs … some families are motivated by these successful people. so they put their children in school to become as successful as their role models.’ (009, male, opd) participants shared approaches to support education, including providing basic financial support, teaching children communication and functional skills, and promoting independence. they also spoke about the need for assistive devices and material support: ‘… there should also be access to schools … for example, by giving blind students white canes so that they can go to school. and assistive devices in general should be second of the priorities. and the next should be stationery, because these students might join schools, but still they need that kind of support.’ (013, female, government officer) participants also highlighted that inaccessible schools need environmental modifications: ‘we have tried a lot to create a conducive environment, to create access within the school compounds so that they can use wheelchairs and crutches. and we’ve also worked with the schools so that they can fix bathrooms so that they are accessible for children with disabilities.’ (005, female, cbr) one cbr supervisor described her efforts to overcome numerous barriers, including negative attitudes, inaccessible environments and financial barriers, to successfully support a child with a physical disability pursue his education. participants described various approaches directed at schools and governments to promote education of children with disabilities. one participant explained that teachers need more training and expertise to support children with complex needs. another participant recognised that teachers are overburdened and need better support and incentives. several participants hoped for more schools especially in rural areas. a special-needs education coordinator shared how she supports close relationships and collaboration between families and schools through regular communication: ‘… we evaluate changes every month with the families … we are always in communication. the families also ask us about ways to support their children … there is a strong bond between the families, the children, and the school.’ (011, female, special needs educator) participants described both special-needs schools and inclusive education, although the differences between them were sometimes unclear. one educational provider explained how inclusion has not yet been fully realised: ‘inclusion is of course the new idea here in ethiopia. still, there is an argument that we are not on track for inclusion sometimes, just a kind of integration rather.’ (018, male, special needs educator) children with physical disabilities were generally directed into mainstream schools, whilst children with other disabilities (e.g. sensory, communication or intellectual impairments) were initially placed in special education settings and then expected to transition to mainstream classes, often with minimal support. parental employment and work many participants discussed the importance of employment and income-generation for families and some of the challenges in obtaining and maintaining work, particularly for mothers. the constant care needs of children with disabilities were a major barrier for mothers and several participants mentioned how quality childcare could alleviate this; however, they acknowledged the limited availability, affordability or even welcome for children with disabilities. mothers often faced stigma when attempting to work, requiring providers to advocate and raise awareness: ‘most of the mothers are from low-income families, so they are supposed to do laundry for people, or they sometimes bake injera [traditional flat bread] for other people. so people have concerns in terms of hygiene … they will not be willing to have them work for them … what we do is to consult people to teach other people that … [disability] is not communicable.’ (007, female, cbr) participants shared various other ways they can support employment, including vocational skills-training and linking to job opportunities. furthermore, providing start-up capital was an important support for families to initiate their own business or income-generating endeavour: ‘once we identify [poor families], we make sure that these families get start-up capital. and by doing this they can provide for their family, and they can provide all the basic needs for the children with disabilities.’ (013, female, government officer) one participant described a collaboration with local businesswomen to provide loans to mothers so that they can work and not beg. establishing peer-support groups also helped mothers to participate in income-generating activities. how to manage their income was another area for support. however, one participant highlighted the need to consider each family’s situation and provide choice in decision making: ‘… before we provide [the mothers] with money or finance, we consult with them to make the right choices so that they can do the appropriate work while they feed and care for their children. so it all depends on the mothers and it’s for them to decide the kind of work they would like to do.’ (005, female, cbr) empowering families to manage their responsibilities apart from education and employment, participants described several other approaches to support families amidst their many challenges and responsibilities. firstly, at the child-level, some participants shared how they promote function and independence through specific interventions (e.g. physiotherapy exercises) and training. connected with this, some participants taught parents treatment techniques and how to prevent complications (e.g. contractures, spasticity and atrophy). however, one participant highlighted the need to carefully clarify possible child-related outcomes to minimise unrealistic expectations and disillusionment with interventions. providing appropriate assistive devices was another way to improve children’s participation and fqol: ‘… it’s not easy to get a wheelchair, it’s not affordable, so offering a wheelchair for the child will enable them to connect and establish a connection between himself and the society and family.’ (015, female, government officer) participants also described how they link families to other supports if they cannot provide them. early identification, screening and referral of children with disabilities were important, mainly through the hard work of community fieldworkers and promoting community disability-awareness. secondly, at the family-level, participants affirmed the need to involve families in interventions. they recognised the importance of supporting families more broadly, not just the children. providers particularly focused on supporting mothers as they bear the brunt of responsibility and sometimes require basic support just to survive: ‘always [the mother] carries the child with her. because of that, she needs support. it can be food, it can be shelter or it can be any clothing, because she doesn’t have any work to earn money.’ (003, female, rehabilitation professional) housing was another needed support, as families were often discriminated against or unable to afford rent: ‘most of the families don’t have their own shelter, even if they want to rent the house there are two problems still. one is they can’t afford to rent a house, and the second case is that the people who let them in, they don’t want to have a family who has a child with disability. even if they do manage to rent a house, once the owners find out, they automatically tell them to evacuate, to move out.’ (007, female, cbr) most participants described families’ poverty and enormous needs, sometimes even forcing them to give up their children for adoption: ‘… the families are fond of the children. they are compelled to submit the children to the [charity] on the basis that they cannot afford to raise their children on their own because they have economic problems.’ (017, male, charity) participants recognised their role in providing financial and material support to families including food, clothing, educational materials or start-up capital for a business. thirdly, participants described their role in advocating for children with disabilities and their families at a higher governance-level. several participants highlighted policy gaps: ‘… the primary responsibility of the office i’m working in is creating awareness, because some policies and legislations are not implemented’ (016, male, government officer). another participant highlighted the need for providers to empower opds so they can advocate and raise disability awareness themselves. the urban–rural divide was another highlighted issue, where some providers called for decentralisation of services and more support for rural families. additionally, transportation in rural areas was a barrier for families and service providers: ‘… we are unable to reach the children with disabilities and their families because of lack of transportation’ (014, female, opd). several providers dreamed about having focused, specialised support for children with disabilities and their families, for example a comprehensive rehabilitation centre. participants considered collaboration amongst multiple stakeholders as crucial to address families’ multidimensional needs: ‘it’s essential to collaborate; that’s the families, the society and the government working closely … we need to create awareness so that stakeholders support the children with disabilities to become self-sufficient and independent … it’s unthinkable to secure development [for ethiopia] without the inclusion of the 20 million people with disabilities.’ (010, male, opd) one participant highlighted why everyone should take responsibility: ‘… [disability] is the issue of all organisations because disability can happen even within a fraction of seconds, can’t it? … we don’t have any guarantee to live without disability. so the issue is for all human beings.’ (018, male, special needs educator) providers’ challenges participants of varying expertise were motivated and committed to supporting families to enhance fqol. however, many highlighted overwhelming needs and some expressed disappointment and frustration in being unable to meet such huge demands: ‘i talked with cbr workers and most of them are disappointed, and some of them are frustrated and yeah, me too. it’s very difficult because you go there and there is a need and you can’t do anything.’ (001, male, rehabilitation professional) a lack of trained professionals, limited budgets and negative attitudes were further sources of frustration. another participant explained that lack of prioritisation and ineffective disability policies were the reason for limited budgets: ‘the government has a priority in providing a budget. so if they don’t consider the issues of children with disability or, in general, persons with disabilities get minimal attention, there is no possibility to get a huge amount of budget that could provide the full services for the empowerment of children with disabilities and the parents with disabilities.’ (004, male, social worker) limited budgets and personnel hindered efforts for early identification, screening and intervention: ‘i also regret contacting children who contact us late because some of them could have been treated if they had approached us early … there are some occasions which are sad.’ (013, female, government officer) other sources of frustration were equipment shortages, inadequate maintenance and inappropriate assistive devices. several participants shared how they faced discrimination because they worked with children with disabilities: ‘… things have changed a lot now, but when we started … we did not even feel comfortable doing the job because people used to tell us that it’s not worth doing it … that we should give up the job and stop fooling around with fools.’ (007, female, cbr) another participant expressed frustration with the education system that restricted highly qualified teachers from using their skills because their work in special education was undervalued. even when one participant provided training to support teachers working with children with disabilities, she was disappointed that they expected payment. several providers from different backgrounds expressed a need for more training and professional education to enhance support provision. one participant specifically indicated they need training to write funding grants to implement better projects. although participants recognised that multiple stakeholders must take responsibility for supporting children with disabilities and their families, some felt government was not doing enough: ‘the government is highly responsible for [providing support]. the government should set a platform or systematic arrangement … the policies, the programmes, the guidelines should clearly state the needs of children with disabilities and the required resources and the amount of budget that is required to fulfil those resources for children … the government should take the lion share.’ (004, male, social worker) another participant argued that the overarching need is attitude-change, but it is a time-consuming, often frustrating endeavour universally: ‘… you ask what is the challenge for inclusion; people can mention many challenges, like lack of resources, you know, but the umbrella issue is attitude. if we change the attitude, it is a person who allocates budget, isn’t it? it is a person who provides resources … attitudes cannot be changed overnight. it takes time, takes time not only in our country, even in your country, in developed countries also, the problem of the issue of attitudes is not addressed.’ (018, male, special needs educator) discussion recognising the imperative for practical action to address contextual needs identified by families themselves, we spoke to various local support providers involved with ethiopian families of children with disabilities to explore how they can positively contribute to fqol. participants affirmed that spirituality, relationships within the family and community, and self-sufficiency (primarily through education and employment) are important for ethiopian families’ fqol. they also reiterated the enormous need for support amidst multidimensional challenges that families face. participants described various ways that they support families materially, emotionally, physically and through providing information (kyzar et al. 2012). beyond the fqol conceptual framework derived from ethiopian families’ perspectives (figure 1), participants shared struggles, frustrations and disappointments in their attempts to support families, and their own need for support and collaborative engagement from stakeholders, particularly the government. participants’ level of experience and expertise (table 1) appeared to shape their insightful perspectives adding credibility to the findings. spirituality and family quality of life although research indicates that spirituality is a crucial domain for well-being and a major contributor to fqol (boehm & carter 2019; poston & turnbull 2004), formal support providers can overlook or avoid this dimension (gaventa 2012), especially in western contexts where religion and spirituality can be perceived as purely private. boehm (2022) argues that a theological reflection on fqol is necessary (but overlooked) because relationship with god gives all humans value and meaning and is important for flourishing. this study confirms other fqol research in african contexts where spiritual beliefs are pervasive and critical for families’ well-being and a major source of support for coping with the challenges of raising children with disabilities (ajuwon & brown 2012; aldersey et al. 2020; jansen-van vuuren et al. 2022). in ethiopia, religion and spirituality are inherent to cultural identity and influence views on child rearing, disability, health and well-being (berie et al. 2020; kahissay, fenta & boon 2018). as such, support providers of various expertises must understand and respect families’ values and beliefs and can tap into these as a resource for encouraging acceptance and commitment to children with disabilities, building resilience, and strengthening family and community relationships (pandya 2017). several studies from high-income contexts have identified the need to promote the inclusion of children with disabilities in religious congregations (ault, collins & carter 2013; carter et al. 2016) as well as consider spirituality and religion in special education (ault 2010; zhang 2012). however, further research is needed in low-income contexts, such as ethiopia, to determine culturally acceptable approaches that support such community inclusion. some authors argue that spiritual beliefs can be detrimental to fqol, promoting stigma when the cause of disability is attributed to spiritual factors (e.g. god’s curse, demonic activity) (iyassu & mckinnon 2021; teklemariam 2010). although such beliefs certainly negatively influence fqol, participants in our study argued that these beliefs derive from cultural traditions and superstitions, and rather than being condoned by religious institutions and spiritual leaders, are perhaps ‘warped interpretations of religion’ (bertelli et al. 2019:2008). this disparity of beliefs highlights the need for widespread and dedicated education and awareness-raising, incorporating respected religious and community leaders as fellow disability advocates (kahissay et al. 2018; mihretu 2019; teklemariam 2010). health and rehabilitation workers may also provide a necessary link between traditional and biomedical approaches in ethiopia through their understanding and relationships with local communities as well as health knowledge and training (kahissay et al. 2018). supporting the whole family to enhance family quality of life this study demonstrated the inherently gendered responsibility of caring for children with disabilities as providers predominantly worked with mothers. most fqol studies focus on mothers’ perspectives (mora et al. 2020) and in african contexts, mothers’ caregiving role is perhaps even more pronounced than in high-income contexts. however, disability affects the whole family and holistic, family-centred support promotes fqol (balcells-balcells et al. 2019; vanderkerken et al. 2019; zuna et al. 2014). while support providers in contexts such as ethiopia may need to be particularly attuned to mothers’ needs, they should also consider how to support and engage other family members such as fathers. several african studies have explored why fathers are often less engaged in their children’s lives despite the benefits for children’s development and health; this was largely because of cultural identities where fathers are seen primarily as breadwinners and disability or weakness clashed with rigid perceptions of masculinity (jackson & andipatin 2021; karisa, mckenzie & de villiers 2021; mavungu 2013). one south african study focused specifically on fathers’ experiences of caring for children with autism, finding both joys and challenges, but a need for greater support; fathers also expressed interest in peer-support (pottas & pedro 2016). participants in our study mentioned the importance of sibling relationships, which can influence fqol. yet each family situation is unique, and disability can have both positive and negative effects on sibling relationships (correia & seabra-santos 2021; kyrkou 2018; paul et al. 2021). research on siblings in african contexts is rare, but a south african pilot study showed primarily positive relationships between siblings with and without cerebral palsy (mophosho, widdows & gomez 2009), while another south african study reported mainly negative experiences for siblings of children with severe disabilities (opperman & alant 2003). however, both studies affirmed the need for more family-focused support. several reviews show inconsistent findings for interventions to support siblings of children with disabilities, largely because of the variability in siblings and therefore, their needs, as well as lack of methodological rigour in the included studies (hartling et al. 2014; tudor & lerner 2014). establishing sibling support groups and encouraging parents to openly communicate with age-appropriate information and prioritise quality time for siblings as well as the whole family together, could be beneficial for fqol (paul et al. 2021; tsao, davenport & schmiege 2011). other family members such as grandparents, can also provide support and enhance fqol (lee & gardner 2010; yang, artman-meeker & roberts 2018), but they require support themselves, particularly in low-income contexts where grandparents (especially grandmothers) are often responsible for raising their grandchildren (dolbin-macnab & yancura 2018). more research is needed in ethiopia specifically to understand how to support various family members in culturally appropriate and feasible ways. establishing self-help and peer-support groups can support mothers emotionally, informationally and materially, empowering them to greater self-sufficiency (aldersey, turnbull & turnbull 2016; van der mark et al. 2019). further research is needed, however, to explore how support groups could emotionally and practically benefit fathers, siblings, grandparents and other family members to build relationships and self-sufficiency and promote fqol. furthermore, the findings of this study confirm other african studies (including ethiopia) showing the critical need for childcare to support mothers (aldersey et al. 2020; jansen-van vuuren et al. 2021; mckenzie et al. 2020). yet, childcare could also support the family more broadly by providing respite and allowing parents to work or spend quality time with other children, family or friends. supporting strong family relationships through education and counselling (masulani-mwale et al. 2016; paget et al. 2016) is another role for providers to build family resilience and enhance fqol. as our participants suggested, engaging respected community and religious leaders and elders could help strengthen family relationships, provided they themselves receive appropriate training and support. support providers need support too this study highlights the inspiring resourcefulness, tenacity and compassion of ethiopian support providers. however, they can only do so much with limited time and resources and all participants expressed a need for more support and collaboration to meet families’ needs. collaborative efforts to address stigma and negative attitudes towards children with disabilities and their families are an overarching priority (jansen-van vuuren & aldersey 2020; jones, seager & yadete 2021; tekola et al. 2020). although the uncrpd ratification was a positive step for disability rights in ethiopia, ineffective policy implementation and enforcement hinder the full realisation of fqol; iyassu and mckinnon (2021) call for greater government accountability and action. reducing disability stigma would not only benefit families but also support providers, by improving resource allocation, incentives and respect. support providers from every sector need additional training (including opportunities and funding) to improve awareness, attitudes and skills as they work amongst people with disabilities, their families and communities (jansen-van vuuren & aldersey 2018; smith, papadakis & munnik 2022; tilahun et al. 2019). several participants highlighted the urban–rural divide where rural families face greater barriers from stigma and limited support. considering the higher proportion of disability and poverty in rural areas, more resources and support are needed in rural areas to increase access to disability and health services, as well as education and employment opportunities for children and adults with disabilities (geda et al. 2016; hailemariam et al. 2019; tekola et al. 2016). limitations despite efforts to incorporate diverse perspectives of ethiopian support providers, this study is not without limitations. firstly, recruiting participants with the cbr programme’s assistance may have created bias and not fully portray the breadth of support providers involved with families of children with disabilities. however, this partnership provided important connections to participants who would otherwise have been difficult to contact. many of the participants provided support in a more formal capacity; hence, interviewing other informal support providers (e.g. religious leaders, neighbours) could offer different and important insights. future research could also compare informal and formal support for families, including roles, effectiveness and access to different types of support. secondly, because of covid-19 interviews were conducted using zoom, with the potential for diminishing gestures and expressions and rapport. despite many participants interviewing at the cbr centre, poor internet networks were a challenge, disrupting interviews, and sometimes making understanding difficult. thirdly, the first author was not ethiopian and could not speak amharic; therefore, she did not have a deep understanding of the local context and required an interpreter for some of the interviews. translation allowed a real-time conversation between the interviewer and participants so they could express themselves in their own language. however, interpreters influence how information is conveyed and meaning is potentially lost in translation (chiumento et al. 2017; resch & enzenhofer 2018). considering the pros and cons of professional versus ‘informal’ interpreters, the authors attempted to take advantage of both; their interpreter had no formal interpreting qualification, but had an excellent grasp of english and amharic, communicated professionally and was familiar with the cbr programme. conclusion disability support providers from diverse backgrounds described various approaches to supporting ethiopian families of children with disabilities, affirming the centrality of spirituality, relationships (with family and community) and self-sufficiency (primarily through education and employment) for fqol in this context. they were committed to families, recognising the enormous challenges and imperative need for support; however, they also expressed frustration and disappointment at the limited resources and negative societal attitudes towards disability. an overarching role and priority to enhance fqol was raising disability-awareness through educating families and communities. participants urged collaborative engagement and action because ‘the issue [of disability] is for all human beings’. this requires commitment from governments, non-government organisations (ngos), opds, disability advocates, support providers and families, to build an inclusive and accessible environment for all, where children with disabilities and their families can ultimately flourish. acknowledgements the authors would like to thank the interpreter for his professional and committed service during interviews. they would also like to thank the university of gondar cbr centre for providing resources and a space to conduct interviews. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.j.-v.v. as the project leader conceptualised and conducted the study, wrote the original draft and revised and submitted the manuscript for publication. s.d. coordinated participant recruitment and data collection, provided resources and contributed critically to the interpretation of findings and reviewing and editing the manuscript. r.l., b.b. and h.m.a. also provided critical input on the study design, development of the interview guide, interpretation of findings, and editing and review of the manuscript. h.m.a also provided overall supervision and guidance. funding information the first author received funding for her phd from the queen elizabeth ii diamond jubilee scholarship programme from universities canada, rideau hall foundations and community foundations of canada (2018–2021). however, the funders had no role in the design of the study, the collection, analyses or interpretation of data, the writing of the manuscript, or the decision to publish the results. data availability the data that support the findings of this study are available from the corresponding author, j.j.-v.v., upon reasonable request. the data are not publicly available due to restrictions (e.g. their containing information that could compromise the privacy of research participants). disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references ajuwon, p.m. & brown, i., 2012, [family quality of life in nigeria’, journal of intellectual disability research 56(1), 61–70. https://doi.org/10.1111/j.1365-2788.2011.01487.x aldersey, h.m., 2012, ‘family perceptions of intellectual disability: understanding and support in dar es salaam’, african journal of disability 1(1), 32. https://doi.org/10.4102/ajod.v1i1.32 aldersey, h.m., ahmed, a.n., tesfamichael, h.n. & lotoski, n., 2020, ‘needs of families of children 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cabernet crescent, hurlingham manor 2196, south africa dates: received: 08 nov. 2013 accepted: 13 aug. 2014 published: 20 nov. 2014 how to cite this article: marsay, g., 2014, ‘success in the workplace: from the voice of (dis)abled to the voice of enabled’, african journal of disability 3(1), art. #99, 10 pages. http://dx.doi.org/10.4102/ ajod.v3i1.99 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. success in the workplace: from the voice of (dis)abled to the voice of enabled in this original research... open access • abstract • introduction    • historical views of disability    • defining disability    • the south african context • motivation • research methodology    • describing the participants       • data collection       • making meaning of the data • descriptive summary of data    • first question: how did you become employed or self-employed? please describe the process       • placement through agency       • social networking       • family business       • self-employed    • second question: what helped you to become and remain successfully employed?       • enabling environment       • medication and support from professionals       • self-determination and good work ethic       • support structures       • support from family       • self-knowledge       • third question: what were the obstacles you had to overcome?       • special needs not always met       • stigma and discriminatory practices       • negative self-perception       • difficult experiences in education and training    • fourth question: please feel free to add anything more you may feel is of interest with regard to you becoming gainfully employed despite the fact that you are differently abled       • lack of awareness and the need to educate others about (dis)ability       • defying the disablist attitude       • (dis)ability as a strength    • limitations of study • discussion    • policy    • support structures    • education and training    • change in attitude for the individual and society    • self-determination    • enabling environment • conclusion • acknowledgements    • competing interests • references abstract top ↑ the intention of this article is twofold; first to encourage a shift in seeing ‘the disabled’ not as people with disabilities but rather as people with unique abilities. secondly, to explore ways of facilitating gainful employment for these uniquely abled people. the term disability is examined against a backdrop of definitions including the definition postulated by the international classification of functioning. in this article, the life experiences of a purposive sample of people with (dis)abilities who have been successful in the world of work are explored. a narrative approach gives voice to their experiences. quotes from the participants’ responses are used to illustrate the common themes that emerged relating to their experiences. these themes are resonated against a backdrop of relevant literature. if disabled people are enabled to recognize and use their unique abilities, as well as develop various self-determination skills, imagine the endless possibilities which could arise for them and society in general. introduction top ↑ the united nations convention on the rights of persons with disabilities (crpd) (united nations 2008) facilitated the implementation of programmes and policies regarding the rights of people with disabilities in south africa. however, it appears that there continues to be significant gaps in knowledge regarding the situation of people with disabilities, their families and their environment. thus, opportunities for success are limited (department of women, children and people with disabilities [dwcpd] 2013; department of social development [dsd], dwcpd & unicef 2012; eide & ingstad 2013; wehmeyer 2013a).the intention of this article is twofold: firstly, to encourage a shift in attitude towards people with disabilities, regarding them not as disabled, but rather as people with unique abilities. secondly, to reveal and discuss some of the common themes that people with disabilities have used to describe their experiences in the world of work. the international classification of functioning, disability and health (icf) classification system uses, to the extent possible, neutral language to name its components and categories. the use of neutral language is helpful and also challenging. for the purpose of this article, i choose to engage in positive and preferred language, and to refer to people with (dis)abilities because the focus is on individual ability. historical views of disability the view of people with (dis)abilities has shifted during the last 60 years. the catalyst for this shift could be attributed to the droves of veterans who returned to their home countries in europe with disabilities after serving in world war ii. until the 1950s, people with (dis)abilities were considered to be dysfunctional and were often institutionalised. since then, two major models have been debated, namely the medical and social models. the medical model is best summarised by referring to the international classification of impairments, disabilities and handicaps (icidh) developed by the world health organization (who 1980). this model focusses on disability as an individual pathological problem, and promotes the view of a disabled person as dependent and in need of care and cure. hence, people were systematically excluded from society. eventually, people with disabilities began to challenge the way they were treated, giving rise to the social model, which draws attention to physical, social and environmental barriers that construct disability. the disabled people’s movement argues that the ‘cure’ to the problem of disability lies in the restructuring of society to reduce barriers that prevent people with disabilities from realising their potential. in response to these models, the world health organization developed the international classification of functioning, disability and health (icf) which provides a multidimensional framework that is widely used today (who 2001). the change from focussing on the individual disability as pathological, to focussing on the individual within the context of the environment and social community has important implications for developing policies pertaining to (dis)ability and has been richly debated (buntinx 2013; brueggemann 2013; eide & ingstad 2013; oliver 2009; shogren 2013; watermeyer et al. 2006; wehmeyer 2013b; wilson & lewiwcki-wilson 2001). recently, (dis)ability has been examined through the lens of strengths-based positive psychology. wehmeyer (2013b) states the following: the historical view of disability as pathological has run its course, although it remains far too prevalent. the success of people with disabilities in all aspects of life, aided by civil protections and equal opportunities, has made pathology-based understandings of disabilities irrelevant or inaccurate. it is well past time to begin to consider disabilities using a strengths-based focus. (p. 5) the strengths-based approach of positive psychology provides a platform for discussion in this article. defining disability defining disability is controversial and difficult. the icf views disability as a complex phenomenon and provides a multidimensional framework incorporating medical and rehabilitative interventions with environmental and social interventions in a more optimistic way. the advantage of this framework is that it incorporates all aspects of a person’s life, including medical (body function and structure), social (ability to participate), environmental factors (the person within the context of his or her physical world) and personal factors (race, gender, age and education). although the icf-model attempts to be culturally neutral, the question is whether such neutrality is possible. different kinds of impairments are understood differently, and have different consequences in different cultures (brueggemann 2013; dwcpd 2013; eide & ingstad 2013; watermeyer et al. 2006).according to bach (2013), 80% of people with (dis)abilities live in developing countries. seeing that data collection is difficult, not much research has been possible. eide and ingstad (2013) report that there are substantial gaps in services for people with disabilities, and that disability is associated with a lower level of living. the fact remains there is a link between poverty and disability and that disability affects millions of families in developing countries (dsd et al. 2012; eide & ingstad 2011; eide & ingstad 2013; filmer 2008; priestley 2006; watermeyer et al. 2006; who 2011). the construct of (dis)ability can be interpreted as a form of social inequality resulting from oppressive social structures rather than from individual difference or biology (balcaza et al. 2009; brueggemann, 2013; eide & ingstad, 2013; priestley 2006). the south african context south africa is described as a rainbow nation, which means that it is a home to a plethora of different cultures that influence the interpretation of (dis)ability. the perception of ‘disability’ is exacerbated in the south african context by historical and political structures. the history of south africa is woven with tales of people in authority, dictating to others what they need, and what is good for them (hansen & sait 2011). the policy of segregation from the past, and the present employment equity act have given rise to two approaches to (dis)ability in the south african context: the broad definition (disability as discrimination) and the narrow definition (disability as impairment) (hansen & sait 2011; van deventer 2011). these two approaches cloud perception and interfere with proper reporting, thus blurring quality data on disability in the south african context. some people are unable to recognise and acknowledge that they have a disability. others, fear stigmatisation and consequently fail to report (dis)ability. figures received from specific disability organisations often contradict those received from statistics south africa (2010; cf. dwcpd 2013); for example, the disability rights commission (drc) report of 2007, states that: [s]tatistics, where available, suggest that disabled people are under-represented or are present but not disclosing their health or disability status and so are not represented in the figures. (p. 20).this view is echoed by van deventer (2011) who suggests that statistics vary between 2% and 12%, and that there is disparity between all the organisations that present statistics regarding people with (dis)abilities who are employed. despite commitments from the national skills development strategy (nsds) to increase opportunities for training and skills development for people with (dis)abilities south africa is still far from achieving its goal in this regard (department of higher education and training [dhet] 2010; soudien & baxen 2006). despite the set target to employ a minimum of 3% of people with (dis)abilities, the figure for employed people with (dis)abilities dropped from almost 1% in 2009 to 0.5% in 2011 (van deventer 2011). south africa adopted a policy of inclusion in education and integrated learners with special needs into ‘mainstream schooling’. this move has not always benefitted learners with special needs because of the diversity of difficulties, exacerbated by the fact that not all educators are trained to recognise and deal with (dis)abilities (dalton, mckenzie & kahonde 2012). data from 22 of the 23 public universities shows that 5807 students with disabilities were enrolled in higher education institutions in 2011, accounting for only 1% of total enrolment (dhet 2014). this decrease could be attributed to the limited opportunties for education and training. the world health organization report (2011) states that: in south africa it is thought that school attendance and completion are influenced by the belief of school administrators that disabled students do not have a future in higher education. (p. 216) however, it would appear that cognisance has been taken of this disturbing fact. blade nzimande, minister of higher education and training, speaking at the launch of a white paper on post-school education and training in january 2014, stated that: despite attempts to integrate disability into the broader policy arena, currently there is no national policy on disability to guide education and training institutions in post-school domain. the management of disability in post-school education remains fragmented and separate to that of existing transformation and diversity programmes at the institutional level. individual institutions determine unique ways in which to address disability, and resourcing is allocated within each institution according to their programme. levels of commitment toward people with disability vary considerably between institutions, as do the resources allocated to addressing disability issues. tvet (technical vocational education and training) colleges in particular lack the capacity, or even the policies, to cater for students and staff with disabilities. (dhet 2014:8) this statement highlights the difficulties experienced within education and training facilities in south africa. furthermore, nzimande stated that the department of higher education and training’s disability funding was underutilised in 2010 and 2011 at levels of only 47% and 55% of available funding respectively (dhet 2014:8). motivation top ↑ there have been several calls for research to promote the rights and participation of disabled people in our society (afrinead 2009; dhet 2014; dwcpd 2013; eide & ingstad 2013; who 2011). research is urgently needed to move disability up the economic development agenda (world bank 2000). the slogan disabled people south africa (dpsa) adopted is ‘nothing about us, without us’. participation of people with (dis)abilities is regarded as an important aspect of the new paradigm on (dis)ability, and has important implications for the way in which research is done. one cannot overemphasise the need for collaboration between people who have (dis)abilities, professionals who assist people with (dis)abilities, civil society and state institutions. more knowledge and a new understanding are gained by engaging in conversation with people who have (dis)abilities. oliver (2009) states that:if disabled people left it to others to write about disability, we would inevitably end up with inaccurate and distorted accounts of our experiences and inappropriate service provisions and professional practices based upon these inaccuracies and distortions. (p. 9) there is a danger that research may become oppressive. therefore, the aim of this study is to engage in what is referred to as ‘emancipatory research’ using indigenous knowledge (barnes & mercer 1997; barnes, oliver & barton 2002; moore, beazley & maelzer 1998; oliver 2009). the reality is that people with (dis)abilities are their own best advocates (barnes & mercer 1997; barnes et al. 2002; eide & ingstad 2013; filmer 2008; oliver 2009; watermeyer et al. 2006). i work as a psychologist assisting people with (dis)abilities to position themselves in the world of work. in response to a need to improve my way of working, and in an attempt to stimulate further conversation around effective policies and practicies, i have undertaken this study. i could be classified as (dis)abled. however, i have offered resistance to this theoretical classification and have endeavoured to overcome difficulties that prevent me from doing the work i wish to do. in fact, perhaps the need to overcome these difficulties may inspire and assist the work i do. research methodology top ↑ this is a qualitative descriptive study using a narrative approach. this approach was chosen because it allows the experiences of people with (dis)abilities in the world of work to be described, thereby giving greater meaning to practice. narrative inquiry has a distinguished history and is increasingly used in studies that describe social experience (clandinin & connelly 2000; josselson & lieblich 1995; lieblich, mashliach & zibler 1998; riessman 2008; sandelowski 2000). narrative inquiry successfully captures personal and human dimensions that cannot be quantified into dry facts and numerical data (clandinin & connelly 2000). as a researcher, i seek credibility based on accountability, trustworthiness and dependability. a process of reflexivity was used, which makes the researcher aware of her own experiences, perceptions and interpretations and how these may influence the way she hears what the participants are telling. ethical considerations governing this study include the following: • participation in this project was entirely voluntary. • there was neither cost nor benefit for the participants. • the participants were entitled to read the draft of this paper and make comments. • confidentiality was and is respected at all times. describing the participants oliver (2009:5) states that ‘the link between personal experience and what people write cannot be ignored and should not be denied’. a purposive sample was selected (n = 25 with 14 men and 11 women from diverse cultures). all the participants have received education and training in marketable skills. they are all gainfully employed and live in urban areas. the average age of the participants is 37.4 years; however, two participants did not reveal their age.various categories of (dis)ability are represented, and often more than one (dis)ability is stated for each person. it is important to note that the primary (dis)ability is used to compile the frequencies. eleven participants were born with the condition and 14 participants acquired their condition through illness, injury or traumatic life events: • physical difficulties (n = 9) – four of these people have difficulty with mobility • emotional difficulties (n = 5) – specifically depression and anxiet • learning difficulties (n = 6) – three with attention deficit hyperactive disorder (adhd), two with attention deficit disorder (add), and one person falling within the autism spectrum. • sensory impairment (n = 3) – two people with visual impairment and one with hearing impairment • chronic illness (n = 2) – one person with epilepsy and one with rheumotoid arthritis. data collection a biographical questionnaire was completed. then, prompted by moderately structured open-ended questions, participants were invited to describe their experiences in the world of work. some participants preferred to tell their experiences orally, others preferred to write down their responses. making meaning of the data qualitative thematic content analysis was used to identify the themes that emerged from the responses. sometimes the themes overlapped and hence were modified in the course of analysis as it became necessary to accommodate new data and new insights (lieblich et al. 1998; riessman 2008; sandelowski 2000). the themes used to describe the experiences of the participants were named, confirmed by counting and then summarised using descriptive statistics. located in a hermeneutic circle of re-interpretation, narratives with common story elements can be reasonably expected to change from telling to telling, making the idea of empirically validating them for consistency or stability completely alien to the concept of narrative truth (clandinin & connelly 2000; josselson & lieblich 1995; lieblich et al. 1998; riessman 2008; sandelowski 2000). whilst acknowledging that no description is free of interpretation, it is also important to remember that although a particular theme was not mentioned, it does not mean that it was not experienced by the person. therefore, it is difficult to offer absolute frequencies. themes that emerged from each question are summarised below, illustrated with some direct quotations. a discussion reflecting these responses against the background of literature follows thereafter. the reader is invited to reflect his or her experiences against the experiences of the participants. descriptive summary of data top ↑ first question: how did you become employed or self-employed? please describe the process more than one way of entering the world of work was mentioned by all the participants and frequencies are difficult to determine. there is nothing unusual about the approaches mentioned, however there were some interesting responses which are illustrated. the following themes emerged:• placement through agencies that specialise in placing people with (dis)abilities • finding employment through social networking • joining the family business • becoming self-employed. placement through agency it was interesting to note that some of the participants experienced their interviews as hostile. it would appear that the prospective employer, and in one case the placement agency, was not sensitive to the unique needs of the participant, as illustrated by the following quotations:l: ‘i applied for a job through a recruitment agency that got work for disable people. the job was to stand all day and greet people. unfortunately that didn’t last long as i am not able to stand all day because of rheumatoid arthritis.’ ca: ‘interview was difficult. all would go well in the interview until i mentioned i am hard-of-hearing. that word alone scared them.’ social networking l: ‘i was fortunate enough that a distant family member owned her own little electrical wholesale company and she offered me a job as a “girl friday” and receptionist. i was very lucky as they gave me in-house training. i eventually worked my way up to being a debtors/creditors clerk. after that, it was a little easier getting jobs as i had extensive experience.’ family business r: ‘after school i joined my father in his building business in 2008 we bought a farm where we farm with cattle and we still build occasionally.’ self-employed three participants (12%) are self-employed. both the participants had worked for a period of time within their field of interest before moving into a position of being self-employed:b: ‘whilst studying at university, i was offered a part time position at a media company during the university holiday. i enjoyed the work very much – more than the studying – as it was involved in a field i always wanted to be in. i was kept on as a freelancer for several years, performing multiple tasks in various different disciplines. after a few years working as a freelancer on a permanent contract, i decided to start my own company and have been working successfully on my own for the last six years.’ second question: what helped you to become and remain successfully employed? the major themes that emerged from this question reflect many of the constructs described in the paradigm of positive psychology (wehmeyer 2013a). the main themes were:• choosing or creating an enabling environment • self-determination and good work ethic • support structures (personal, organisational, environmental and spiritual) • self-knowledge. enabling environment all the participants mentioned that they either chose or created an enabling environment:g: ‘you need to find the right environment … doing a project based on my best capabilities. the closer you get to what you are good at and what interests you, you’ll just be on fire.’ co: ‘my lecturers at medical school accommodated my needs since they were enlightened as doctors and appreciated my coping skills and recognised my potential.’ lv: ‘my job now is great as my bosses have been very understanding. they know i have days where i am too depressed to come in to work and they allow me work from home days. they constantly give me feedback and tell me how i am doing and praise me. this keeps me employed. i still consider quitting very often, but it is the support i have from them that keeps me coming to work knowing that i am valued.’ l: ‘doing work that is aligned with your soul. a job that gives you satisfaction, even if for less money. it must be a job that can allow flexibility to allow for the intensely bad times.’ medication and support from professionals all the participants received professional support in one form or another as they had all been diagnosed and categorised with a condition; some received medication. for others, it was counselling that assisted them. the following quotations illustrate the specific kind of assistance received from professionals:l:‘ i make sure i have all the medicines and creams i need with me every day in case my muscles go into spasm.’ f:‘ i have been on medication for my depression since the age of 15 which helps to keep my mood more stable and regulated than i am able to do on my own. working in such a pressured job, i ensure that i get regular supervision within work. i have a fantastic psychiatrist who knows me and what i’ve been through very well as well as a psychologist who is always willing to listen. it took lots of counselling and antidepressants to get me to the stage where i was stable enough to be able to return to school and later on hold down a job.’ lv: ‘ongoing support from a psychologist and medication.’ self-determination and good work ethic self-determination was a theme mentioned by 76% of the participants and 76% of the participants (not always the same participants) also mentioned good work ethic:p: ‘school examination results … i also had a very high work ethic which meant that i always tried to be better at my job than my peers.’ ca: ‘work harder, research more, get full support from colleagues, ask for support and guidance when i needed help.’ kh: ‘promotion did not come easy because of my disability but it was due to dedication and working an extra mile.’ j: ‘hard work and proving to people that being in a wheelchair would not stop me from doing my best. the right attitude.’ lv: ‘i have struggled to stay employed. people within my various work places would be shocked to hear this – but every day has been a struggle emotionally and psychologically. debilitating anxiety that has paralysed me to the point of not being able to breathe … pushing through and forcing myself to do normal tasks.’ support structures sixty percent of the participants mentioned that they actively sought social support at work, which was helpful for them:kh: ‘one of my colleagues offered to go with me to visit schools [part of the participant’s work]. she reminded me that i amnot a product of lazy people because she knew me before and that i was working hard. that was a breakthrough that got me to venture out to schools again.’ fm: ‘my mentor is very patient with me, sometimes i take along time to understand some of the things but she doesn’t give up on me.’ jw: ‘the key to my employment was the risk that the headmaster was willing to take and the lack of pressure to conform to traditional teaching methods.’ kh: ‘i had full support of the management which made me feel valuable and it was a motivator to realise that i am not different from other people. i got support from my superiors by providing me a personal driver who will assist me to carry out my duties like before. it came because i had to show them that i was enthusiastic to accomplish my mission in this world.’ support from family forty-four percent of the participants mentioned that social support from family and friends was helpful:f: ‘i have an amazing family and very supportive friends who have stuck by me through everything i’ve been through.’ l: ‘the support of my family played a huge role in me maintaining a job.’ kh: ‘my family especially my mother, husband and children played a major role in supporting me.’ self-knowledge forty-four percent of participants commented that self-knowledge in terms of their own strengths and limitations assisted them to regulate and adapt their own behaviour so that they were able to work optimally. one participant who struggles with adhd runs his own business, with the assistance of a chartered accountant who takes care of all the financial running of the company. another participant, who also struggles with add, runs his business without assistance and admits that it is disorganised and not as productive as it could be. the comparison of these two stories highlights the need for people to understand and accept their limitations, to have the courage to seek assistance, and then to focus on their strengths and interests: f: ‘i am very aware of my own short-comings and pay close attention to my emotions and any indications that i may be headed towards depression again.’ g: ‘you also need to be clever about what you suck at and who you can use to help you. i have always paired up with someone (a colleague i am friendly with). it’s not all about feeling helpless and in need of assistance. that person will very often require your strengths.’ good communication skills were mentioned by 36% of the participants: jn: ‘i think that the key is communication, willingness and determination. the companies that i have worked for so far have been very accommodating. i have been able to freely express my needs. the fact that l know that it is a two way relationship has helped a lot to address issues.’ twenty percent of the participants commented on how spirituality has assisted them: c: ‘i attribute my success to my lord jesus, my godly, christian parents and family, christian teachers who saw my potential and encouraged my always.’ kh: ‘i am grateful to god for bringing such empathetic people around me. i was able to experience fulfilment in what i was doing. it made me stronger, even to stand against some discriminatory practices.’ only one participant commented on her access to technological assistance (jaws speech reader) and how this technology assisted her once she had been trained to use it. eide and ingstad (2013) state that nearly half of those who need assistive technology devices do not have access to one. the question can be posed whether this means that technological assistance is scarce or did the participants simply not make any mention of technological assistance: jw: ‘the only area that i needed extra assistance with was with entering marks onto the computer (because i hadn’t yet been trained on the jaws speech reader programme).’ third question: what were the obstacles you had to overcome? it would appear that the obstacles mentioned were influenced by the nature of the (dis)ability of the person: physical, sensory, environmental or social. themes evident in these responses were: • special needs are not always met • negative perception of self • stigma and discriminatory practices • difficult experiences in education and training. special needs not always met all of the participants who have mobility difficulties reported hostile environments and difficulties with access and transport. furthermore, the participants with visual difficulties also commented on transport difficulties. the participant with a hearing impairment also expressed difficulty in her work environment:j: ‘accessibility was a big concern for me, even though companies say they are accessible, they really are not. you need to be in the situation to understand the obstacles.’ ca: ‘special needs are not always met – need to make sure get what meetings are about – find ways.’ jw: ‘i had to learn to take public transport. to be independent i initially needed a sighted person to help me to learn the routes. then i had to swallow my pride and learn to hold up a sign showing my destination so that the relevant buses would stop.’ kh: ‘there were numerous challenges along the way. it was not easy at all especially with accessing bathroom and other venues as there are no ramps. my old office (before the accident) was a new environment as i could not access most of the things such filing cabinets and limited my movement because the office and bathroom were small. i sat in the office i used to know, without anybody to support me as to how to adjust. i had to figure out on my own what to do because people do not know what to do for me.’ stigma and discriminatory practices twenty-eight percent of participants commented that the attitude of others (those with whom they work and society in general was difficult):f: ‘i suffer from depression which often is not classed as a disability as such, but rather as a mental health issue. this increases the stigma surrounding the disease and makes me and others like me less likely to talk about it and ask for help.’ kh: ‘i was understood as requiring preferential treatment. i was harassed into taking action by being granted what is called special leave (polite way of dismissal) because the organisation could no longer bear with my presence in the office. thank god because i have forgiven those people. one of the qualities one develops due to disability is patience and forgiveness.’ one participant commented about unfair black economic empowerment (bee) laws which made it difficult for him to obtain employment: j: ‘unfortunately in sa, the bee law just is not fair, especially to a white male.’ negative self-perception sixty-four percent of the participants described their negative self-perception as an obstacle:h: ‘i was afraid i wouldn’t be good enough and that people wouldn’t respect me. i had to put aside my fear of failure. my mood constantly affects those around me. it is not fair for me to expect others to support and help me “pick myself up”. it is a consistent on-going struggle to remain positiveand it is hard work.’ kh: ‘one has a fear of the unknown and what will people accept me and this paralyses you further. it is pretty tough to compete with abled people in the workplace because you constantly want to prove that disability is not an obstacle to deliver quality service.’ difficult experiences in education and training two people with add (16%) commented about their learning experiences being difficult. their teachers had not understood their specific needs and they had not reached their full academic potential. they were only diagnosed with the difficulty in adulthood. they had subsequently received treatment, which had been of benefit to them. these examples illustrate that education structures are not always supportive and enabling:m: ‘i have only recently found out that i have add which explains a lot why business has not run as successfully as it should. the distraction of the add in my head has caused me to be disorganised and also why i didn’t get a better qualification. i wish that i had known about this condition long ago.’ b: ‘suffering from adhd could be a debilitating problem in an unstimulating environment. as such, formal education could be regarded as problematic, as there is very little in the way of multiple thought paths.’ fourth question: please feel free to add anything more you may feel is of interest with regard to you becoming gainfully employed despite the fact that you are differently abled • lack of awareness and the need to educate others about (dis)ability • defying the disablist attitude • (dis)ability has proved to be a strength. lack of awareness and the need to educate others about (dis)ability fifty-two percent of participants commented that they needed to educate those with whom they worked and others in their social network about their special needs and how they can best be helped: jw: ‘educating others about my disability, for example: “when you greet me, please tell me who you are”; “follow my nose and not my eyes”; “may i sit in the chair where my back is to the light?”; “please walk ahead of me”. sometimes reminding people that i am visually impaired and not brain dead in as tactful and kind a way as i can.’ j: ‘most of all, teach people that do not have disabilities that i am not different – i just don’t walk.’ defying the disablist attitude forty-eight percent of the participants commented on how their own change in attitude assisted them. they described how channelling their (dis)ability into a strength, and offering resistance to their own disabilist attitude, enabled them towards success: kh: [after the accident] ‘my doctor declared me as incapacitatedand unable to go back to work again as he alleged that i was 100% disabled. i refused to believe him and i did not submitthe “medically unfit” certificate to my employer.’ p: ‘my philosophy was that i never saw myself as disabled and this resulted in the people i worked with very quickly becoming ‘blind’ to my disability.’ ca: ‘being hard of hearing wasn’t going to prevent me from becoming the person i wanted to be, a teacher.’ defying the disablist attitude forty-eight percent of the participants commented on how their own change in attitude assisted them. they described how channelling their (dis)ability into a strength, and offering resistance to their own disabilist attitude, enabled them towards success:kh: [after the accident] ‘my doctor declared me as incapacitatedand unable to go back to work again as he alleged that i was 100% disabled. i refused to believe him and i did not submitthe “medically unfit” certificate to my employer.’ p: ‘my philosophy was that i never saw myself as disabled and this resulted in the people i worked with very quickly becoming ‘blind’ to my disability.’ ca: ‘being hard of hearing wasn’t going to prevent me from becoming the person i wanted to be, a teacher.’ (dis)ability as a strength twelve percent of the participants consider their disability to be a strength:b: ‘in my field, and specifically running my own business, one needs to be able to concentrate on a variety of things simultaneously, and my “disability” actually serves me well in terms of when one task is getting boring or running smoothly, my mind moves over to another, and i can jump from one task to another without interrupting a train of thought. in my industry, we’re permanently moving, changing environments and facing different problems with each new setup. there is nothing mundane about it, and there is no routine. the lack of routine could adversely affect people who require stability in order to function, but it’s the very thing that makes it easier for me to tackle, as there is always something new to stimulate the mind.’ g: ‘the energy – be it physical or mental that you once were made to believe was a disability will help you to think on your feet, be seen as someone who thinks “outside the box” and people will tell you, you are different. you’ll know they mean it in a good way.’ r: ‘the point i am trying to make is that many autistic spectrum people usually have great genius in certain areas. in fact, the imbalance caused by the condition and the genius seem too often go together. it seems as if the imbalance in abilities may lead them to brilliance in others.’ limitations of study i acknowledge that this study has limitations. firstly, all the participants have had, or are receiving, the benefit of appropriate education and training, and live in urban areas. thus, they may be considered to be the privileged few. secondly, this study was undertaken out of personal interest to develop better strategies to inform my practice of work with people who have special needs. therefore, it is a microview of (dis)ability within the workplace. finally, it is important to note that whilst acknowledging that hiv and/or aids is a very important dimension of (dis)ability, especially in the south african context, i have set this aspect aside in an attempt to narrow the scope of this study. i believe that the impact of hiv and/or aids on success in the workplace is worthy of an independent study. discussion top ↑ policy global awareness of disability is increasing. the united nations convention on the rights of persons with disabilities (crpd) specifically refers to the importance of international development in addressing the rights of people with disabilities and promotes their unrestricted integration in society. despite the fact that south africa has world class policies of good practice and has ratified the convention on rights of persons with disabilities (united nations 2008; world bank 2014), the plan of action to implement these policies is sometimes inadequate. the reality is that rights do not automatically enable people to live better lives.one of the primary objectives of the disability policy guideline (department of public works 2010) was to encourage a tangible shift from policy to practice. the experiences described by the participants in this study illustrate that policy has not effectively influenced practice. perhaps state institutions do not yet have the capacity and skills needed to action these policies (dalton et al. 2012; eide & ingstad 2013; dhet 2014; dsd, dwcpd & unicef 2012; van deventer 2011). hence, as members of society it is necessary for us all to work in our communities to raise awareness and provide appropriate support structures for people with (dis)abilities. comprehensive psycho-educational prgrammes offered to all stakeholders would be of benefit in creating effective practice. support structures people do not exist in isolation; each individual is a member of a family and social community. there is abundant literature focussing on people with (dis)abilities and their families, how they interact with their environment and society, as well as their need for support (buntinx 2013; charlton 1998; ingstad & whyte 1995, 2007; moore et al. 1998; rocco 2011; stone 2005; watermeyer et al. 2006). the responses from the participants in this study confirm the need for support structures, and illustrate how people with (dis)abilities who receive support from family, friends and colleagues are enabled and thus become successful.despite the recommendation made in ‘article 8 of crpd’, which addresses awareness training, there is still evidence in the responses of a lack of appropriate training in society about disabilities and practical support. buntinx (2013:13) defines support systems as ‘resources and strategies that aim to promote the development, education, interests and personal well-being of a person and enhance individual functioning’. the responses from the participants in this study illustrate that (dis)ability is a community endeavour, which requires a multidimensional and multidisciplinary approach. awareness training, using specific psycho-education programmes, could be provided for each person with a (dis)ability, as well as their families and prospective employers, who are their primary support system. there is also evidence that the role of all professionals who work with people with (dis)abilities is useful when they identify unique strengths and develop individualised strategies to enhance the functioning of each person. bach’s (2007) view that the role of the professional is not to determine if – but how people with (dis)abilities can live meaningfully and productively in a community. buntinx (2013:15) suggest a four-phase approach which may be useful: • assessment of individual strengths • assessment of the person’s subjective expectations and objective needs • linking personal goals to a range of related resources and action strategies • evaluate support outcomes. education and training taking into account ‘article 24 of crpd’ addressing education, and despite commitments from national skills development strategy (nsds) to increase opportunities for training and skills development for people with (dis)abilities south africa is still far from achieving its goals in this regard (afrinead 2009; dhet 2014; dwcpd 2013;who 2011). the dhet acknowledges the continued difficulty in providing sufficient capacity to accommodate and serve students with (dis)abilities, despite the fact that they have committed to making funding available. clearly, more than funding is required to ameliorate the difficulties experienced by people with (dis)abilities in education and training.blade nzimande continues to call for an adequate policy framework. he states that: a strategic policy framework is necessary to guide the improvement of access to and success in post-school education and training (including in private institutions) for people with disabilities. the framework will create an enabling and empowering environment across the system. the framework will set norms and standards for the integration of students and staff with disabilities in all aspects of university or college life, including academic life, culture, sport and accommodation. (dhet 2014:8) general psycho-education programmes would stimulate more knowledge about the needs of people with (dis)abilities and bring about a change in attitude. change in attitude for the individual and society oliver (2009), amongst others, speaks about the ‘disablist’ attitude, which he describes as particularly disempowering. one of the six principles of critical disability theory is that ‘ableism is invisible’ (rocco 2011:7). therefore, it is imperative that people with (dis)abilities demonstrate their ‘ableism’, in order to be recognised. i wish to argue that people may not be able to demonstrate their ‘ableism’ if they struggle with self-esteem and are not recognised and encouraged to reach their potential.all people entering the world of work benefit from having self-knowledge and being able to identify their natural talents, accept their limitations, and acquire market related skills (marsay 2008). several responses from participants in this study vividly illustrate how their (dis)ability can in fact be used as a strength. indeed, many of the success stories told by these participants pivot on their ability to offer resistance to a ‘disabilist’ attitude. i wish to argue that many people who have (dis)abilities can be very competent members of the workforce if they are enabled to identify and develop their unique talent. assisting people to establish positive self-regard, to see their intrinsic self-worth and to know their strengths and limitations is a priority. wehmeyer and little (2013:119) explain that people who are able to use accurate knowledge of themselves, value themselves and who know their strengths and weaknesses are able to capitalise on their knowledge. eide and ingstad (2013) state that women with disabilities are worse off than men. wehmeyer and little (2013:125) describe findings of research studies which indicate that males show a higher degree of self-determination than females in certain cultures and societies. could it be that in africa, gender inequality may exacerbate the outcomes for people with (dis)abilities, especially women? is there a link between a positive attitude of self, regard from others, and the ability to be self-determined? self-determination eide and ingstad (2013) discuss several issues which make it difficult for people with disabilities to live well. however, they note that many individuals with (dis)abilities still manage. i wish to argue, based on evidence discussed in literature and supported by the themes exposed in this study, that self-determination is crucial to the success of people with (dis)abilities. according to wehmeyer and little (2013), self-determination actions are identified by four essential characteristics: • a person acts autonomously • behaviour is self-regulated • the person initiates and responds to the event(s) in a psychologically empowered manner • the person acts in a self-realising manner (p. 119). the constructs of positive psychology include: • quality of life • self-determination • adaptive behaviour • optimism • hope • problem solving • forgiveness • gratitude • spirituality. many of these constructs seem to be part of the fabric of the experiences told by the participants in this study, thereby highlighting these actions of self-determination. wehmeyer and little (2013) advocate that self-determnation can be learned. they suggest that further research around appropriate interventions to develop and investigate self determination would be useful in moving forward. self-determination is an essential part of success in the workplace for people who have (dis)abilities and is a product of both the person and the environment. according to wehmeyer and little (2013:121), ‘self-determination is affected by environmental variables as well as by the knowledge, skills and beliefs expressed by the individual’. hence, it is necessary to empower people who have (dis)abilities, with essential self-determination skills and assist them to seek out and create environments that offer the opportunity to actualise their potential using specific psycho-education programmes. enabling environment the responses from the participants in this study illustrate how people with (dis)abilities may not always be treated with sufficient knowledge, understanding or respect for their unique needs. furthermore, it would appear that work environments continue to present accessibility difficulties. ‘article 9 of crpd’ addresses accessibility. eide and ingstad (2011:139) refer to ‘structural violence’ which includes not only buildings that are not easily accessible for those with disabilities, but also structures like the natural terrain that is inaccessible. these structures are not violent themselves, but become adversarial when nothing is done to overcome them as barriers. rocco (2011:6) suggests that the environment becomes disabling when spaces are created without regard to the needs of people with (dis)abilities. therefore, once ubiquitous accessibility needs have been met, employers and employees need to communicate and collaborate to address specific (dis)abilities. it is necessary for employers to understand the specific needs of each individual, rather than making assumptions. in addition, it is necessary for people with (dis)abilities to be enabled to communicate their needs with confidence. furthermore, it is essential for people with (dis)abilities to make their unique abilities visible to others. it is interesting to note that whilst the majority of participants who applied for employment through a specialist agency were successful, some placements were unsuccessful. the participant who suffers from rheumatoid arthritis describes how she was required to work in a position she was physically unable to do. on the other hand, it is encouraging to note that another participant, who struggles with paraplegia, was able to qualify as a medical doctor due to understanding and accommodation of her condition. thus, it may be useful for employers to adopt an all-encompassing biopsychosocial approach to disability, to pay keen attention to the ergonomics of the workplace and the surrounding area, as well as to make provision for special needs surrounding transport for people with (dis)abilities. clearly, there is a need for both general and specific psycho-education for both prospective employers, with regard to how they can accommodate the environment to suit the unique needs of a person with (dis)abilities, as well as the person with (dis)abilities himself or herself. the supports intensity scale (thompson et al. 2004) may be a useful tool to ascertain the specific needs of each person and can form the basis for an individualised support plan (isp) (buntinx 2013). conclusion top ↑ ‘article 27 of crpd’ states that people are entitled to participate fully in the world of work. the stories of success described by the participants in this study highlight the following areas to be considered:• effective education and training is necessary to equip people who have (dis)abilities with appropriate marketable skills. • self-determination skills are essential to success and can be learned. therefore, these skills need to be developed as part of specific psycho-educational intervention plans. • biopsychosocial support structures including attention to creating enabling work environments are essential for people with (dis)abilities to live, learn, work and play. • it is necessary to find ways to co-construct an ‘ableist’ attitude in society. i wish to argue that more employment opportunities for people with (dis)abilities would stimulate hope for those who struggle with (dis)abilities and would work towards co-constructing an ‘ableist’ attitude in society. • both general and specific psycho-education programmes for employers, families and people with (dis)abilities that focus on how to address and support the needs of people with (dis)abilities is one of the most important approaches to consider that would ameliorate environmental and social obstacles. it would appear, that despite good intentions and altruistic policies, there remains a lot that needs to be done to action good practice. this study describes the experiences of people who have education and live in urban areas. if they describe inadequate practice, then the question is posed, how much worse are conditions in rural areas, where people have limited access to education and health care services. if we believe that the ‘cure’ to the problem of disability lies in exploring and making use of the strengths of the (dis)abled person as well as restructuring of society’s attitude towards (dis)ability, then, all people need to be trained according to their abilities, and it is the responsibility of the entire community to work towards providing enabling individualised support structures. acknowledgements top ↑ competing interests the author declares that she has no financial or personal relationship(s) that may 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press, illinois. world bank, 2000, attacking poverty: world development report 2000/2001, world bank, new york. world bank, 2014, disability overview , viewed 13 may 2014, from http://www.worldbank.org/en/topic/disability/overview#1 world health organization, 1980, international classification of impairments, disabilities and handicaps , viewed 13 may, from http://whqlibdoc.who.int/publications/1980/9241541261_eng.pdf world health organization, 2001, international classification of functioning, disability and health , viewed 13 may 2014, from http://www.who.int/classifications/icf/en/ world health organization, 2011, world disability report , viewed 13 may 2014, from www.who.int/disabilities/world_report/2011/report.pdf abstract introduction methodology discussion on practical implications acknowledgements references about the author(s) jana v. müller ukwanda centre for rural health, rural clinical school, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lieketseng ned centre for rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa hananja boshoff ukwanda centre for rural health, rural clinical school, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation müller, j.v., ned, l. & boshoff, h., 2019, ‘a university’s response to people with disabilities in worcester, western cape’, african journal of disability 8(0), a439. https://doi.org/10.4102/ajod.v8i0.439 original research a university’s response to people with disabilities in worcester, western cape jana v. müller, lieketseng ned, hananja boshoff received: 18 oct. 2017; accepted: 30 aug. 2019; published: 24 oct. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the call for institutions of higher education to foster interaction with communities and ensure training is responsive to the needs of communities is well documented. in 2011, stellenbosch university collaborated with the worcester community to identify the needs of people with disabilities within the community. how the university was engaging with these identified needs through student training still needed to be determined. objectives: this study describes the engagement process of reciprocity and responsivity in aligning needs identified by persons with disability to four undergraduate allied health student training programmes in worcester, western cape. method: a single case study using the participatory action research appraisal methods explored how undergraduate student service learning was responding to 21 needs previously identified in 2011 alongside persons with disability allowing for comprehensive feedback and a collaborative and coordinated response. results: students’ service learning activities addressed 14 of the 21 needs. further collaborative dialogue resulted in re-grouping the needs into six themes accompanied by a planned collaborative response by both community and student learning to address all 21 needs previously identified. conclusion: undergraduate students’ service learning in communities has the potential to meet community identified needs especially when participatory action research strategies are implemented. reciprocity exists when university and community co-engage to construct, reflect and adjust responsive service learning. this has the potential to create a collaborative environment and process in which trust, accountability, inclusion and communication is possible between the university and the community. keywords: clinical training; collaboration; community engagement; disability; distributed training; undergraduate health sciences. introduction rural health science training is not a new concept, particularly for medical students globally. the earliest account of this in south africa was in kwazulu-natal in the 1940s and later in 1992 with the allied health sciences (ahs). in a study by pillay et al. (2016) on ahs learners’ perceptions of rural clinical training in their final year of study, it was evident that rural training changes students’ experience practice from urban-based, individualised care to the more rural-based clinical training. students found that rural clinical training is undoubtedly challenging for both the educators and the learners given its complexity. however, the necessity of undergraduate health science students to go through varied contextual training that is socially responsive cannot be overstated. the experiential learning offered by rural training not only aims to equip students with the necessary skill and insight to work within a community, but also enable them to identify and respond to needs at the community level. of equal importance, this responsiveness in clinical training should facilitate some level of accountability in higher education institutions (heis) towards the communities they work with in training their students (doherty & couper 2016; global consensus for social accountability of medical schools 2015). this is particularly critical if we are to have a responsive curriculum within the context of disability and rehabilitation where vast capacity is needed to address diverse disability issues effectively. stellenbosch university’s (su) ukwanda centre for rural health established the first rural clinical school (rcs) as an official rural campus to tygerberg faculty of medicine and health sciences (fmhs) in 2011. the purpose of this school was to equip students with the skills and willingness to work in rural and underserved areas (van schalkwyk et al. 2011). initially, only medical students were trained at the rcs, but in 2013 the school offered rotating rural programmes for all four health care training programmes, namely occupational therapy (ot), physiotherapy (pt), human nutrition (hn) and speech language and hearing therapy (slht) (pillay et al. 2016). this article focuses on these four divisions. each of these divisions had their own outcomes, divisional priorities and separate coordinators who were employed independently of each other and who had no overlap in academic responsibilities. while the university was in the preparatory stages for the placement of students in this rural school, a conference was collaboratively hosted by the faculty of theology, the centre for rehabilitation studies (crs) and the department of psychology at su with the theme disability, theology and human dignity. this was su’s first international interfaculty conference. the third day of this conference was held at the campus of the national institute for the deaf in worcester with the goal of meeting with a group of persons with disabilities in worcester. the rationale for this was to get an understanding of the needs of persons with disability in worcester as the fmhs at the time was busy developing an rcs for students’ rural placement. from this third day of the conference, a two-page list of needs was then developed and handed over to clinical facilitators of the above-mentioned divisions. these expressed needs are tabulated in table 2 of this article. the first round of students’ placements was scheduled for 2012. this was also a helpful internal process for su to further discuss the issues of disability and human dignity within a broader university strategy. the hope project, which is su’s institutional response to issues of poverty and vulnerability in africa, chimes closely to some of the 2011 conference recommendations and the needs that had been specified by persons with disabilities in worcester. subsequent to this, the crs started planning how to ensure that clinical facilitators that are placing students in worcester with the goal of responding to the needs of persons with disabilities in that area are using the list to guide them in placement of students (ned et al. 2015). this article therefore focuses on how academic coordinators responded to the list of needs as expressed by persons with disability through the students’ rural clinical practice blocks in worcester. background of the rural clinical school the rcs is a small campus consisting of six clinical educators and ten support staff with an average of 50 students on the campus at any one time. ukwanda centre for rural health focuses on rural placement training, where the worcester community, students and academic coordinators work closely together. the school encourages collaboration and innovative academic development. students from the four disciplines are placed in their final year for short clinical block rotations. a portion of students are placed at rural sites and others at urban sites in a 1-year cycle (pillay et al. 2016). pillay et al. (2016) further reported that, on average, 44 of 100 su ahs students experienced the rcs training platform during their final year of training. by 2014, rcs students were trained at 19 different sites in worcester. these sites included areas where persons with disabilities sought health care and sheltered work opportunities. these were centres specifically for persons with disability and centres for early childhood development. the sites for training were identified by the academic coordinators who were resident in the community and had been working with the local health system for between 2 and 10 years. the selection was based on needs analyses conducted with the staff at potential training sites, prior to this current project and before the introduction of the crs. of the 19 sites, ten of them accommodated more than one division’s students at a time, allowing for inter-professional education and collaborative practice (ipe) to occur at these sites. the 19 placement sites were predominantly primary health care and community-based services. the students were involved in service learning at clinics, mobile clinics, special schools, non-governmental organisations (ngos), rehabilitation centres, early childhood development crèches, private practices, hospitals and primary schools. each division had their own academic objectives for the student rotations. the primary focus areas were as follows: physiotherapy focuses on health promotion and disease prevention by giving exercise and information classes, training carers regarding ergonomic rehabilitation and assessment and treatment of patients on home visits. human nutrition focuses on health promotion at schools, clinics, on farms and the local radio station. disease prevention also took place by means of talks, pamphlets, recipes, audits of food service units, assessments of patients, lifestyle education and monitoring of health facilities. breastfeeding consultations, growth monitoring and recipe development formed part of the programmes. speech, language and hearing therapy focuses on community-based interventions and health promotion. screening, assessment of adults and children, and provision of swallowing, speech and language therapy. sign language and language enrichment with children, assisting patients with post lingual hearing loss, aural therapy and articulation. occupational therapy focuses on paediatrics, particularly targeting early childhood development, psychosocial block with a particular focus on mental health, service learning which is about provision of community-based services and programme development, and lastly a general hospital block which focuses on one-on-one rehabilitative treatment. table 1 presents a summary of the length and type of block rotations each ahs division offered at the rcs for a period of 4 years since the divisional programmes started. table 1: summary of divisional rotations. the objective of this study was to describe the process the university (divisional clinical coordinators in collaboration with the crs) followed to engage with the needs of persons with disabilities in the worcester community, through the placement of the ahs students. there is less documentation of the engagement process that takes place between the university and the community. more specifically, this article, firstly, describes the university’s participatory process of responding and, secondly, identifies what is the list of needs that was responded to by the ahs student training at the rcs from 2011 to 2013, followed by recommendations by the community moving forward and plans implemented since. methodology a single participatory case study in worcester with persons with disabilities and the community was undertaken following the list of needs they expressed in 2011. framed within a participatory action research (par) approach, this case study methodology was particularly suited with the intention to gain an in-depth understanding into how the undergraduate rural student service learning was unfolding and responding to the expressed needs in this context (stake 2008). the study site has well-established disability institutions such as national institute for the deaf (nid), institute for the blind and deafnet with international footprints, exposing the various stakeholders that are also involved in continuously addressing needs of persons with disabilities. the list expressed by persons with disabilities highlighted a case for exploration of a collaborative and coordinated response to these expressed needs. it is within this context that the case was formulated. the rurality of the worcester area within the western cape province also added another context to the case formulation. this case study was the response of the academic coordinators to the expressed list of needs of persons with disabilities. the participatory nature and inclusion of various stakeholders acted as a better fit with the case study in shedding light on multiple perspectives relating to a collaborative response to the needs (o’leary 2017). in this regard, this tradition of qualitative inquiry was deemed appropriate to use while situating each stakeholder in its historical, political, economic and socio-cultural contexts demanding multiple data sources. this case study was approached in a manner suggested by stake (2008) who viewed it mainly as the ‘object of study’ and not so much how the case is studied. thus, par as an additional lens guided the collaborative process and approach of defining what the case was about from multiple perspectives and methods (atkinson & hammersley 1998; le compte & schensul 1999). participatory action research methods thus became the approach of the university’s response to the list of needs expressed by persons with disabilities (ned et al. 2015). this is because par methods enable people to conduct their own analysis of the situation, plan and take action (booi 2012). this study included a series of workshops using methods such as venn diagrams for monitoring how the service learning is responding to the needs identified and the nominal group technique for prioritising needs for action planning. ontologically and epistemologically, this process was couched within the transformative paradigm which allows for recognition of unequal power held by theorists, the researcher and the participants who may hold dissonant perspectives on disability needs and how to effectively respond. this was an attempt to deconstruct the subjugated views (henning &van rensburg 2004; booi 2012) about addressing disability issues often perpetuated by dominant rhetoric. it was also an attempt to close the power gap in processes of knowledge production in order to strengthen the voices and actions of persons with disabilities who are often marginalised (booi 2012; chilisa 2012). the above-mentioned participatory methods like venn diagrams and nominal group techniques in interactive workshops sessions were used to facilitate voices of persons with disabilities (ned et al. 2015). various studies have shown these participatory methodologies to be effective in engaging community participants through interactive workshop sessions especially in shifting power dynamics in research and to ensure that the marginalised speak about their experiences and speak back (mitchell, de lange & moletsane 2017). additionally, these participatory methods are known to privilege the meaningful participation of the community. the principal researcher from the crs facilitated these interactive workshops. following disabled people’s slogan of nothing about us without us, it was thus important that persons with disabilities are at the centre of discussions with the process allowing for a back and forth process of ongoing feedback to each group involved. these engagements happened in a series of interactive workshops (ned et al. 2015). first, persons with disabilities were invited to validate the list of needs before it was given to the academic coordinators. second, the ahs coordinators presented their response to the needs in an audience of persons with disabilities and their organisations. this presented another shared dialogue opportunity where persons with disabilities shared their reflections of the response from the academic coordinators. the principal researcher from the crs acted as a facilitator in these workshops. this shared dialogue led to a further synthesis of the needs of persons with disabilities. lastly, another workshop took place about plans for a collective way forward to ensure that these needs are addressed. thus, the participatory nature of par allowed for sharing of knowledge between groups and was an important aspect of ethics (ensuring research that is beneficial to and inclusive of the community and respecting the autonomy of the community while also emphasising equal participation). this implies that reporting was not a once-off exercise left for the end of the research process but became a continuous process throughout these engagements as allowed by the par method of action reflection. we applied for ethical clearance from the university and were informed that ethical clearance was not needed and advised to rather apply when interventions begin. the project was interpreted as consultative workshop which does not need ethical approval. although participatory research is inherently ethically good compared to traditional research, it is also prone to issues of unequal power relations which may result in ethical challenges in partnerships. thus, the feedback from ethics was concerning particularly because it may speak to poor recognition of par as a valid research methodology within the health sciences. this project had an advisory committee which consisted of different representatives from disabled people’s organisations in worcester. this committee served (amongst other things) to coordinate the activities of the project as well as to ensure the participation and inclusion of persons with disabilities. further details are described in the following sections explaining the steps taken in this engagement process. the participatory response: action and reflection the rcs ahs coordinators were tasked with preparing a response to how the students’ clinical rotations had been developed around the original needs identified for people with disability. these coordinators received the two-page list of needs for the first time in 2014 and were asked to assess how the ahs students’ training at the rcs was addressing some of these needs identified in 2011. despite seeing the document for the first time, since the ahs coordinators who were only involved at the rcs after 2011, they engaged with the list of 21 needs, and compared them to the objectives of the clinical activities and the placement of the students. alignments were noted, gaps were identified and their reflective response was presented to the worcester community on 27 june 2014. the audience included persons with disabilities from the community, various representatives of disabled people’s organisations and various representatives from service providers across sectors, local government and the academic coordinators. the scope of this work did not document the type of disabilities which were represented in the audience. however, disabled people’s organisations that were present mainly focused on visual, physical and hearing impairments. the reflections of the coordinators concerning the above-mentioned reflection of how the clinical programmes might be able to meet some of the identified needs expressed during the disability conference in 2011, it was revealed that the service learning of students at ukwanda spoke to 14 of the 21 needs identified, a summary of which is presented in table 2. this table presents needs identified together with activities of students and staff as a response. table 2: list of needs identified with students and staff activities. table 2 (continues…): list of needs identified with students and staff activities. table 2 (continues…): list of needs identified with students and staff activities. post the responses of the coordinators, the audience which consisted of persons with disabilities, disabled people’s organisations and the academic coordinators further synthesised the needs. this is because it was clear that some of the needs were not yet being responded to through service learning. this shared dialogue led to a further synthesis of needs leading to the following themes which were highlighted as needing to be prioritised: clarify the correct terminology to be used for persons with disabilities including disabilities related to early childhood development. include aspects of disability in the undergraduate theoretical curriculum on all levels including research strategies to put theory into practice. research related to mobility, access and transport. develop a database of information on disability-related issues. share resources with provincial departments to join hands in achieving their priorities. partner with disabled people’s organisations and communities for capacity building and empowerment. engage with communities on disability issues to increase sensitisation and encourage equalisation of opportunities for persons with disabilities. use of the nominal group technique was helpful in re-grouping and prioritising these needs with the aim to plan actions for what was not yet being addressed and strengthen what is already existing. this was followed by a discussion on steps that need to be taken as a way forward. the participatory response: learning and planning for further action a working group to take forward issues and suggestions arising from presentations and discussions during the 2011 conference was established, consisting of both the crs and the rcs staff as well as the worcester stakeholders across government and disability sectors. the aim was to mediate issues between the faculty and the community in terms of how students could engage with the community. a disability reference group was then established in 2015 with the following objectives: to validate and improve the list of needs expressed to play a leading role in suggesting a model for responding to these needs to create and maintain links or community interaction between the rcs and the community this working group was a good response aimed at ensuring that student service learning addresses the service needs at ground level if we are to have a disability responsive curriculum. it was realised that perhaps this is a participatory cycle that should be followed by divisions to inform each curriculum review stage as needs are constantly changing. this process followed in this response could be used as a methodology for each divisional curriculum review and perhaps even work on hosting combined curriculum reviews for the four different divisions to foster both integration and inter-professional education. such a process would allow for the emergence of curriculum directly from the community as per the social constructionist view and use this as an ideological tool as well as a vehicle for social change (cherrington 2017). in terms of clarifying terminology, the rcs used the international classification of functioning, disability and health (icf) endorsed by the world health organization (2001) to facilitate holistic thinking and assessment of needs specific to persons with disabilities across the different divisions. the icf has its own terminology that is used by the coordinators at the rcs. however, a need to clarify terminology between ngo, government, university and community stakeholders in worcester regarding persons with disabilities was taken up by the working group. this use of the icf not only creates uniformity across the divisions for better inter-professional education but also aligns with sectors like the health sector as well as the latest disability and rehabilitation related policies which advocate for icf. of equal importance was the identification of the need for the rcs coordinators to gain insight into when and how disability was included in the theoretical training of the students prior to their arrival at the rcs. this would help determine if accredited workshops to keep students and staff up to date with the recent understandings and underpinnings of disability and ways of managing disability issues beyond the medical model would be necessary at the rcs, thus linking with the need for continuous capacity building through accredited workshops. participants developed a list of topics they would like accredited workshops on and this was provided by the university through the crs. mobility, access and transport were major issues for the sustainability of student projects due to roads being inaccessible and no transport being available for persons with disabilities. the working group supported a needs analysis of persons with disabilities in rural communities, involving access, with the support of the local municipality. the students were tasked with doing a survey in the community assessing the accessibility of facilities used by persons with disabilities and report back to the working group. these matters were then taken forward to municipal and district offices by a representative of the working group. although the rcs campus grounds were physically accessible, no braille, sign language or loop systems had been put in place. the coordinators then arranged for regular sign language sessions at the rcs for students to attend and a dvd on learning sign language was made available at the rcs library. collaboration with the national institute for the deaf to involve sign language interpreters for conferences held at the rcs was initiated. coordinators also made the effort to situate their students clinical training at sites where they could gain more experience from and insight into people with sensory disabilities, for example institute for the blind – now called innovation for the blind. physical resources such as the rcs community-based service learning centre were shared with community organisations running a local soup kitchen, a swop shop, hospice community-based care and later on a community garden club. the rcs campus was made available to outside organisations for free if the workshop or presentation spoke to issues relevant to student and staff and invited them to attend. the same agreement was made regarding talks, courses and conferences held at the rcs, which were open to community members to attend. the development of a journal club open to all community members was started in 2014 and run on a monthly basis. an annual rcs community partnership function which is attended by representatives from the municipality, cape winelands departments of health, education and social development and the local community since 2013 acts as fertile ground for interactive discussion around some of the community’s most pressing needs and topics presented on the day. co-hosting of conferences on an annual basis was also identified in 2011. the rcs hosts the annual rural research days with anova health institute regarding health and wellness issues in the community since 2013. the event is open to all community members and offers full sponsorship for most attendees. the first cape winelands district rehabilitation conference co-hosted by the rcs took place in november 2014 and the annual community partnership function is hosted at the rcs in collaboration with community partners on an annual basis. persons with disabilities were specifically invited to attend and present on ‘building resilience in people with disability’ at the national rural health conference held in worcester in 2014. education and training in communities regarding awareness and sensitisation of disability was an important part of advocacy and empowerment of persons with disabilities. the outcomes of these workshops were to introduce more people to disability and related issues as well as highlight how disability inclusion is everyone’s responsibility, given the complexity of challenges faced by persons with disabilities. all ahs students visited and worked at organisations servicing persons with disabilities to sensitise staff to issues around disability and to also learn from the lived experiences of persons with disabilities. students were also involved in raising public awareness regarding disability through partnering with ngos and/or department of health to present at disability and health awareness days. since 2014, student and staff attended community organised events such as the 1000 days indaba and women’s day health talks. a head injury support group was started and facilitated by the slht students at the local service learning centre and a therapy garden for wheelchair users was started and facilitated by the ot students. the voice project, presented by the rural health advocacy project (2014) on patient and health worker advocacy was hosted at the rcs twice (2015 and 2016), which served as another platform of bringing together academia and the community. in this project, there was more focus on the rights and responsibilities of persons with disabilities when it comes to victimisation, injustice or neglect. additionally, practitioners requested accredited workshops to enable them to better respond to needs of persons with disabilities. some of the topics that were covered include maternal health and disability; disability and sexuality and implications for the first thousand days of a child; healthcare providers’ guide to reporting healthcare challenges; building communities of practice; motivational interviewing; and understanding ethics in inter-professional teams. all workshops had an attendance of about 40–60 people. students also engaged with health care workers at old age homes and in the community with regard to understanding disabling pathologies and environments. some of the divisions gave regular talks on the local radio station valley fm. slht students have been involved in lip-reading strategies for people with hearing loss, while human nutrition students received sessions from the nid on working with persons with hearing loss, deaf or hard of hearing prior to their food services training. consequently, slht students developed various alternative and augmentative communication boards for patients in the community to enable the family and other ahs professions to effectively communicate better during therapy. additionally, the ahs students were working at four sites where ecd was the focus of intervention. all ahs made the effort to include parents in the early development educational interventions to further build on the existing skills of parents in raising their children with disabilities. community members with disabilities equally played a role in sensitising our students and staff through their collaboration and participation in rcs students’ training. many of these community members co-presented with the students at the annual community partnership function and are valued for the contribution they make to student learning. research by students specifically ot was orientated to understanding the needs of people with disabilities in rural areas and to inform practice. student and staff conference presentations also spoke to the theory and practice involved in facilitating persons with various types of disabilities. the division for social impact at su took on the responsibility of developing and managing a virtual space where any community can approach the university to request research in a certain area of need. ethical considerations this study did not require ethical approval as no direct intervention or contact with human or animal subjects was needed. discussion on practical implications less has been written about research which engages community stakeholders and the need to understand this as part of co-constructing a socially responsive curriculum. the methodology we followed has characteristics of what mitchell et al. (2017) call audience research which is within participatory visual research methodologies. we argue that it may be important to recognise audience research in doing disability work in order to expand curriculum development processes to be more participatory and engaging. additionally, it has the potential to enhance doing ‘nothing about us, without us’ in community participation for capacity building projects. the process followed here shows that engaging persons with disabilities and the community when planning for service learning has the potential to make students services more relevant and beneficial for both the university and the community. bezzina (2019) concurs that engagements render services and development truly beneficial for persons with disabilities particularly in the global south. it is also apparent that academia cannot initiate or support the necessary systems and programmes required by a community if it works independently. a collective, collaborative process needs to be followed before student placement to ensure that students respond to the needs within the community. this approach will enable community members to participate actively in meeting their own needs and will serve to enhance the sustainability of responsive interventions. the consequential establishment of trustful relationships is a key to opening up spaces for dialogue and integration of diverse knowledge. in this study, a dialogue was opened between the university, the community of persons with disabilities and sectors involved in serving this community. furthermore, such collaborations can contribute to building greater alignment between higher education institutional curricula and the community needs while also training students on how to respectfully work with communities from a bottom up approach. it is to be noted that the approaches to collaborative action are complex and time-consuming (doherty & couper 2016; pillay et al. 2016) due to the ongoing interactions between multiple stakeholders with different and sometimes opposing agendas. however, these dialogues and relationships have been documented as critical and central to ensuring culturally and contextually relevant training that speaks to the needs of the communities heis serve (smith-tolken & bitzer 2017). students are then also afforded the opportunity to engage in continuous learning that enables adaptation in response to changing needs in communities. from this experience, we also argue that longer placements and more integrated rotations across the disciplines would bring a much more holistic interaction with the community thus enabling integrated responses to needs and models of best practice. it would also be critical for continuity of projects. doherty and couper (2016) attest to the fact that the integration of different sub-disciplines and longitudinal exposure of students to communities are central to achieving high standard rural placements. the strengthening of resources and other support provided for these efforts is thus critical in order for universities to demonstrate more social impact. the value of the already existing inter-professional collaboration in the response to the needs of the community cannot be emphasised enough. the joint efforts of all the ahs disciplines inadvertently addressed some of the community identified needs. if each discipline had contributed independently according to their silo disciplines, it would have been impossible to meet these needs. lessons learnt in facilitating reciprocity and responsivity from the results, it is apparent that the ahs students, through their service learning on the rcs clinical training platform, are addressing some of the needs identified by persons with disabilities. however, many areas still need a stronger focus and commitment from the university. stronger collaboration in the form of inter-professional education between the various ahs disciplines could enhance this commitment and facilitate a more comprehensive and coordinated response to the community needs through student service learning. furthermore, such collaboration may lay a foundation for strengthened relationships and social impact between the community and the university. doing disability work requires reciprocity and responsiveness if we are to truly honour the inclusion saying ‘nothing about us, without us’. we learnt that reciprocity can only exist when both sides have a say and are actively participating in the collaboration. in this project, the reciprocity is evident in the sense that the community was able to express their needs to ensure that student training is servicing the hosting communities while the students were also provided with an opportunity for service learning that is community-based and community-led. the approach to the different activities facilitated a collaborative engaging process between stakeholders but equally the project was in its approach grounded, from the beginning, in principles of participation and inclusion. for instance, reflecting on the community’s needs and adjusting student’s programmes to speak to some of these needs facilitated a collaborative environment and process in which trust, accountability, co-listening, co-learning and communication were possible between the university and the community. this is to say that service learning should not only focus on upskilling the students but should also focus on serving the community in a manner that is beneficial to current needs and one that enables continuity. given the human resource gaps, this is particularly significant in contexts where allied health practitioners are scarce at community level. this approach is integral to community-based rehabilitation principles of inclusion, participation of and giving voice to the community on how to work with communities through an empowering bottom up approach. additionally, reciprocity became evident as the students and staff were open to listening and learning from persons with disabilities and their lived experiences while they also willingly opened themselves to listen and learn from the staff and students. in this context, learning becomes reciprocal in the sense that everyone learns to listen to each other. this is how knowledge is produced conversationally and in relation to one another (ned 2019). the voices of persons with disabilities are important not only because they speak from the position of having a lived experienced of disability but also because it is these voices that can deepen the understanding of doing relevant disability work. it is for such reasons that it is always important to recognise and capture the agency of persons with disabilities (eide & ingstad 2013). given that disability experience is plural, recognition of agency further enriches the disability experiences. equally with capacity building, it was not only students whose needs were served through service learning in these communities, the project equally opened an opportunity for the disabled people’s organisations and practitioners to request accredited capacity building workshops as they saw the needs. instead of going in with set topics of workshops from the university, the capacity building direction was fully led by the community stakeholders. this ensured that capacity building is relevant and beneficial to the community. each step of the interactive workshops was an opportunity for meaningful dialogic engagement between the university and the community such that all stakeholders got an opportunity to share their reflections and critique each other. these engagement processes certainly helped the coordinators in rethinking carefully about the service learning they facilitate with the students. they also deepened the understanding of the community, community dialogue and cultivated co-reflexivity. often, reflexivity is emphasised only amongst researchers (mitchell et al. 2017). this project demonstrated the significance of co-reflexivity amongst all involved. maximising reflexivity between researchers, coordinators and persons with disabilities ensured that all stakeholders involved fully participated and that continuous dialogue was maintained (mitchell et al. 2017). this shared engagement is integral to sustainability especially because community dialogue is never a once-off affair. as a result, the capacity building workshops as an immediate response extended beyond the funding term. the community and practitioners identify a topic of need and the crs identifies a speaker for a workshop to happen. limitations identified the most significant limitation of the project was that we did not have a monitoring and evaluation tool to assess whether the needs have now changed or whether the various activities assisted to address the needs fully. therefore, progress was difficult to assess. if we were to redo this project, we would need to develop a monitoring and evaluation tool which should be developed upfront in the participatory processes to be able to assess social impact. more persons with disabilities could be involved in the different activities, especially in capacity building workshops, so that they can facilitate these workshops. students could also be trained to take more of a facilitator role to ensure that they do not do ‘for’ but do ‘with’ during interventions to enable full participation of persons with disabilities and continuity. this small study was not representative of all persons with disabilities in this community. a follow-up larger study with more participation of persons with disabilities, especially those with sensory impairments, intellectual disability and mental health conditions, is needed. acknowledgements the authors thank the participants of worcester and stellenbosch university involved in the workshops regarding ‘people with disability in worcester’. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.v.m. was the project leader. l.n. was responsible for the coordination of the university’s response to people with disabilities and contributed substantially to the methodological discussion. h.b. made conceptual and editorial contributions to the article. funding funding from the ‘fund for innovation in teaching and learning’ provided by the centre for teaching and learning at stellenbosch university was used to conduct this study. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references atkinson, p. & hammersley, m., 1998, ‘ethnography and participant observation’, in n.k. denzin & y.s. lincoln (eds.), strategies of qualitative inquiry, pp. 110–136, sage, london. bezzina, l., 2019, ‘disabled people’s organisations and the disability movement: perspectives from burkina faso’, african journal of disability 8(0), a500. https://doi.org/10.4102/ajod.v8i0.500 booi, m., 2012, ‘disability and service delivery: perspectives of service users in a rural community in the eastern cape’, unpublished master’s thesis, university of cape town, cape town. cherrington, a., 2017, ‘positioning a practice of hope in south african teacher education programmes’, educational research for social change 6(1), 72–86. https://doi.org/10.17159/2221-4070/2017/v6i1a6 chilisa, b., 2012, indigenous research methodologies, sage, los angeles, ca. doherty, j.e. & couper, i., 2016, ‘strengthening rural health placements for medical students : lessons for south africa from international experience’, south african medical journal 106(5), 524–527. https://doi.org/10.7196/samj.2016.v106i5.10216 eide, a.h. & ingstad, b., 2013, ‘disability and poverty – reflections on research experiences in africa and beyond’, african journal of disability 2(1), 31. https://doi.org/10.4102/ajod.v2i1.31 global consensus for social accountability of medical schools, viewed n.d., from http://www.healthsocialaccountability.org. henning, e. & van rensburg, w., 2004, finding your way in qualitative research, van schaik publishers, hatfield. le compte, m.d. & schensul, j.j., 1999, analyzing & interpreting ethnographic data, altamira press, walnut creek. mitchell, c., de lange, n. & moletsane, r., 2017, participatory visual methodologies: social change, community and policy, sage, london. ned, l., mji, g., krige, f.k., muller, j.v., duvenage, c., runowicz, a. et al., 2015, ‘a coordinated collaborative response to rehabilitation needs of persons with disabilities’, physical medicine and rehabilitation – international 2(7), 1056. ned, l., 2019, ‘reconnecting with indigenous knowledge in education: exploring possibilities for health and well-being in xhora, south africa’, doctoral dissertation, stellenbosch university, stellenbosch. o’leary, z., 2017, the essential guide to doing your research project, 3rd edn., sage, london. pillay, m., bester, j., blaauw, r., harper, a., msindwana, a., muller, j. et al., 2016, ‘allied health professional rural education : stellenbosch university learners’ experiences’, african journal of health professions education 8(2), 169–173. https://doi.org/10.7196/ajhpe.2016.v8i2.578 rural health advocacy project, 2014, the voice project, viewed 12 october 2017, from http://www.rhap.org.za/author/rhap/. smith-tolken, a. & bitzer, e., 2017, ‘reciprocal and scholarly service learning : emergent theoretical understandings of the university–community interface in south africa’, innovations in education and teaching international 54(1), 1–13. stake, r.e., 2008, ‘qualitative case studies’, in n.k. denzin & y.s. lincoln (eds.), strategies of qualitative inquiry, pp. 199–149, sage, london. van schalkwyk, s., bezuidenhout, j., conradie, h., de villiers, m. & fish, p.b., 2011, going rural: lessons learnt from the first year of implementation (2011) of the rural clinical school of the faculty of medicine and health sciences, stellenbosch university, stellenbosch. world health organization, 2001, international classification of functioning, disability and health (icf), world health organization, geneva. abstract introduction research method and design results discussion limitations of the study conclusion and recommendations acknowledgements references appendix 1: community-based rehabilitation: understanding it in south africa about the author(s) sarah rule disability innovation africa, faculty of health sciences, university of cape town, cape town, south africa anton roberts cbr education and training for empowerment (create), pietermaritzburg, south africa pamela mclaren disability action research team (dart), howick, south africa susan philpott school of education, college of humanities, university of kwazulu-natal, durban, south africa citation rule, s., roberts, a., mclaren, p. & philpott, s., 2019, ‘south african stakeholders’ knowledge of community-based rehabilitation’, african journal of disability 8(0), a484. https://doi.org/10.4102/ajod.v8i0.484 original research south african stakeholders’ knowledge of community-based rehabilitation sarah rule, anton roberts, pamela mclaren, susan philpott received: 15 jan. 2018; accepted: 10 may 2019; published: 25 sept. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: community-based rehabilitation (cbr) is a complex concept and strategy that has been implemented in diverse ways globally and in south africa. internationally, some stakeholders have described cbr as confusing, and this may influence implementation. a southern african study reports that there is insufficient evidence of the understanding of cbr in the region to influence training, policy and practice. objectives: the aim of this study was to investigate south african stakeholders’ knowledge of cbr. method: this article reports on an electronic survey that was part of a larger mixed methods study. based on the sample of 86 respondents, descriptive statistics were used to analyse the quantitative data and thematic analysis for the qualitative data. results: the majority of respondents had had exposure to cbr, but almost a quarter had no knowledge of the cbr guidelines and matrix. the results revealed varying knowledge concerning the key concepts of cbr, its beneficiaries and its funders. respondents identified persons with disabilities as having a central role in the implementation of cbr. problems with the visibility of cbr programmes were noted, as well as misunderstandings by many therapists. conclusion: the implementation of cbr, and its goal of ensuring the rights of persons with disabilities, is negatively affected by the confusion attached to the understanding of what cbr is. the misunderstandings about, and lack of visibility of, cbr in south africa may hinder its growing implementation in the country in line with new government policies. keywords: community-based rehabilitation; disability inclusive development; survey; south africa; role of persons with disabilities. introduction community-based rehabilitation (cbr) is a complex concept, approach and strategy. since the initial conceptualisation of cbr, there have been many developments in the field, including a paradigm shift away from cbr being conceptualised as purely a rehabilitation and health-orientated strategy located in the community (deepak et al. 2011; m’kumbuzi & myezwa 2016; rule, poland & gona 2008; rule 2013; wickenden et al. 2012). the evolutionary change of cbr to disability-inclusive development should have an impact on implementation, training and policy, but requires that cbr stakeholders should have up-to-date knowledge. the current international conceptualisation of cbr in the cbr guidelines and matrix (world health organization [who] 2010) covers a broad range of components – health, education, livelihoods, social and empowerment. community-based rehabilitation also includes features such as disability rights as encapsulated in the united nations convention on the rights of persons with disabilities (uncrpd) (united nations 2006), poverty reduction and community development, all of which are encompassed in the term ‘disability-inclusive development’ in the cbr guidelines (who 2010). deepak et al. (2011) found that the cbr matrix fairly describes the practice of the vast majority of cbr workers who had multi-sectoral responsibilities from the projects on three continents that they studied. the shift from working on health issues alone to covering education, livelihoods, social promotion, inclusion and empowerment was described as challenging but necessary for mongolian cbr workers (como & batdulam 2012). several authors note that any cbr or disability-inclusive development project or programme is unlikely to work across all components and elements of the cbr matrix, although they may focus on more than one component (cayetano & elkins 2016; create 2015). the cbr stakeholders involved in a latin american study by grech (2015:22) indicated a contribution of the cbr guidelines to be that of ‘broadening the areas of intervention beyond health and rehabilitation, driving attention towards the various areas and intersectionalities’. kuipers and cornielje (2012) describe cbr as being dynamic in nature, and thus it cannot be defined in narrow terms. as grech (2015:12) cautions, there is a ‘need to look at cbr as not only fluid, but also [as] a concept that needs to be continuously (re)defined.’ accordingly, there is diversity in the way cbr is implemented globally. another aspect of the complexity of cbr is that several concepts can be interpreted in different ways. for example, the conceptualisation of community may imply a group sharing a particular environment, a coherent geographical space or a common interest or characteristic such as disability (rule, poland & gona 2008). this has implications for who government and cbr personnel engage with in policy development and implementation of cbr. the role of persons with disabilities in cbr has also evolved over time. historically, they were often seen only as recipients of services. since the ilo, unesco and who joint position paper of 1994, cbr has been described as being implemented by persons with disabilities themselves, as well as their families and communities (ilo, unesco & who 1994). however, this theoretical stance is not always implemented in practice. for example, ned and lorenzo (2016) describe a situation in south africa in which government officials had neither the conceptual understanding nor an attitude of willingness to mobilise youth with disabilities to participate in existing or new cbr programmes. an issue of concern that adds to complexity in cbr is that of the costs, funding and sustainability of programmes. community-based rehabilitation was initially promoted as a low-cost option to spread rehabilitation services to masses of underserved persons with disabilities, but the study by grech (2015) indicates that this is not necessarily the case. community-based rehabilitation may be state-funded as in japan (morita et al. 2013), or funded by international non-government organisations (ingos), as in many countries in africa. changes in international donor funding priorities can lead to a reduction or re-direction of funds, and a consequent lack of sustainability or responsiveness of cbr programmes (booyens, van pletzen & lorenzo 2015). in the light of these complexities, several studies around the globe have found that stakeholders describe cbr in its entirety or different components of cbr as confusing concepts (deepak et al. 2011; grech 2015; m’kumbuzi & myezwa 2016; morita et al. 2013). the study by m’kumbuzi and myezwa (2016) was motivated by the lack of information on the conceptualisation of cbr in southern africa. these authors found that stakeholders’ descriptions of cbr had barely moved from the 2004 era and that, on the whole, they did not incorporate the issue of rights as captured in the uncrpd. of concern is the impact that this lack of clarity has on implementation of cbr. morita et al. (2013) described the lack of understanding of cbr as a factor impeding its implementation in japan. similarly, authors writing about other contexts such as mongolia (como & batdulam 2012), lowand middle-income countries in asia and the pacific (cayetano & elkins 2016) and south africa (lorenzo & motau 2014) found poor knowledge of cbr to be a major barrier to the practice of cbr. community-based rehabilitation in the south african context various cbr projects have been implemented around south africa, each having different emphases and methods of implementation. historically, the only government funding for cbr has been provided through various provincial departments of health, resulting in many cbr projects being situated within the health sector. however, there is potential for this to change with the recent white paper on the rights of persons with disabilities (department of social development 2015) addressing all sectors of government, as well as civil society. of particular importance concerning cbr is pillar 4 of the white paper, which promotes the availability of disability-specific services, including ‘specialised and community-based rehabilitation [own emphasis], habilitation and psychosocial support services’ (department of social development 2015:84). the definition of cbr used in the glossary of the white paper is drawn from the internationally recognised ilo, unesco and who (2004) joint position paper on cbr. however, the implementation matrix for the white paper does not mention cbr at all; and the targets for community development seem to focus on accessibility only rather than full inclusion for persons with disabilities. in 2016, the department of health (doh) in south africa released its framework and strategy on disability and rehabilitation. this document sees cbr as key to the doh vision of providing ‘accessible, affordable, appropriate and quality disability and rehabilitation services’ to people with disabilities (doh 2016:13). the document specifically includes the cbr matrix. the doh acknowledges that coordinated action among intersectoral stakeholders is a salient feature of cbr if persons with disabilities are to attain independent functioning (doh 2016). the centrality of the participation of people with disabilities in services is also emphasised ‘based on the principles of community-based rehabilitation and using a disability-inclusive developmental approach and evidence-based practice’ (doh 2016:13). the document has yet to be implemented throughout the country. although these two recent guiding documents include mention of cbr, if the policies are to be implemented to benefit persons with disabilities, it is essential that stakeholders have knowledge of cbr as conceptualised in them. to date, there has been no systematic collection of information on the knowledge of cbr among stakeholders in south africa. the specific research question guiding this study was ‘what knowledge do cbr stakeholders in south africa have of cbr?’ this study therefore seeks to contribute to an evidence base on the knowledge of cbr stakeholders. such an evidence base can contribute to guiding the training of cbr stakeholders as well as to the implementation of policies and the practice of cbr and disability-inclusive development in south africa. research method and design the study reported on in this article was part of a broader research project to examine cbr in south africa using a mixed methods approach. the case studies that formed the qualitative aspect of the research are reported on elsewhere (create 2015). the research was undertaken within a critical realist paradigm, which embraces the use of both qualitative and quantitative methodologies (krauss 2005). research design to obtain a snapshot of the knowledge of different stakeholders in respect of cbr, this study used a survey that elicited largely quantitative data. two of the 10 main survey questions sought to elicit qualitative data. in addition, two optional questions on demographic data were included for those who wished to participate further in the research or who could recommend cbr projects or programmes in south africa to be contacted. the electronic survey was developed using surveymonkey software. for those who reported difficulties in accessing the survey via surveymonkey – particularly visually impaired respondents or those with irregular internet access – the survey was converted to a microsoft word document and emailed to them. this enabled participants to download the survey and complete it offline. visually impaired people were able to use screen reading software to read the microsoft word document. the survey was also conducted telephonically with some respondents. development of the survey tool the survey questions were based on the literature that highlighted important and contentious issues and definitions of cbr. the literature on the history of cbr globally and in south africa informed the development of the response options. questions 1, 2, 5, 7 and 8 of the survey questionnaire allowed for multiple responses (see appendix 1). sampling the survey was distributed to 367 potential respondents from all nine provinces of south africa. initially, respondents were identified from existing databases for national electronic mailing lists in the disability and rehabilitation sectors, including the mailing list of rural rehab south africa. following the first round of distribution of the survey, snowball sampling (o’leary 2017) was used to identify and contact additional respondents. participant description in total, 86 people responded to the survey. participants included the following: individuals from disabled people’s organisations; member organisations of the south african disability alliance; community rehabilitation facilitators; members of rural rehab south africa; lecturers and staff from higher education institutions; ngo staff; government officials from the departments of health, social development and education; and disability focal persons from other levels of government. participants could self-identify in more than one category (figure 1). figure 1: number of respondents per category (multiple responses allowed). the question requesting demographic data was optional, which is a limitation of the survey tool as it prevents a comprehensive analysis of the geographic location of respondents. only 53 of the 86 respondents identified the province they resided or worked in (table 1) and no data was gathered on rural or urban location of respondents. table 1: provincial and national representation of respondents (n = 53). research procedure the initial survey questionnaire was designed and piloted using surveymonkey, with eight targeted respondents taking part. following analysis of the responses and comments in the pilot phase, the questionnaire was revised to improve the clarity of certain questions. the final questionnaire, together with an introductory letter for informed consent, was uploaded onto surveymonkey and then distributed as per the sampling described above. on analysing the summary data from initial responses collated by surveymonkey, the researchers realised that most of the respondents until that point were therapists, with disproportionally fewer community rehabilitation facilitators, disabled people’s organisations and persons with disabilities responding. therefore, a second emailing of the survey specifically focused on the under-represented groups, along with telephone interviews conducted with seven community rehabilitation facilitators, some of whom were also persons with disabilities. data analysis in this study, the quantitative data were analysed using descriptive statistics. the surveymonkey software provided summaries of the quantitative data, which were exported into microsoft excel for analysis and calculation of frequencies and percentages. the qualitative data from questions 9 and 10 of the survey (see appendix 1) were analysed by a process of immersion in the data, ascribing meaning, coding themes and looking for interconnections (o’leary 2017). ethical considerations ethical considerations were catered for through three features of this study. firstly, all participants received information about the nature and purpose of the study. secondly, each participant provided informed consent, having been informed that they could refuse to answer particular questions or withdraw from the research by not returning the survey. thirdly, no identifying information was linked to any individual responses to the survey, thus guaranteeing anonymity and confidentiality (o’leary 2017). results the results of the survey are described in three subsections below, consolidating both quantitative and qualitative data. exposure to and familiarity with community-based rehabilitation participants were asked whether they had had any exposure to the practice or concept of cbr and, if so, from what sources. only 3.5% of the respondents had never been exposed to cbr. the majority (68.6%) had been exposed through their own work, while almost half of the respondents (45.3%) had an awareness of cbr through their academic studies. through cross-tabulation of questions 1 and 2 of the survey (figure 2), it can be seen that for researchers the majority had exposure to cbr through academic studies, while for most other categories of respondents, their own work was the primary source of exposure to cbr. figure 2: cross-tabulation of respondent category with exposure to community-based rehabilitation (multiple responses allowed). this section was further expanded by asking participants about their familiarity with the world health organization’s (who’s) cbr guidelines and matrix (who 2010) (figure 3). only one response to this question was allowed. 23.3% of the respondents indicated that they had no knowledge of the cbr guidelines and matrix. when cross-tabulating questions 2 and 3 of the survey, it is unsurprising to find that the majority of those who were familiar with the cbr guidelines were also those who had been exposed to cbr through their own work. however, more than a third of those who were not at all familiar with the cbr guidelines were respondents who had been exposed to cbr in their own work. figure 3: cross-tabulation of respondents’ exposure to community-based rehabilitation (cbr) and familiarity with the cbr guidelines (multiple responses allowed). knowledge of concepts underpinning community-based rehabilitation to ascertain participants’ knowledge of cbr, the survey included five questions that looked at different concepts that are key characteristics of cbr. question 6 of the survey concerned the definition of cbr. the options for the responses included different conceptualisations of cbr that have been in use internationally since the early 1980s, as well as some specific local south african enactments of cbr. a small majority of participants (50.6%) selected the response that cbr is ‘a programme that facilitates social inclusion and equal opportunities for persons with disabilities’. only 17.6% of participants selected the response in line with the most recent international understanding of cbr as captured in the cbr guidelines (who 2010), being: ‘a strategy for disability-inclusive development’ (table 2). table 2: definitions of community-based rehabilitation selected by respondents (n = 85) linked to the question concerning the definition of cbr, respondents were asked to select five of 12 listed activities that they felt were most important in cbr. all respondents answered the question (n = 86). the five most popular responses (table 3) were involvement of persons with disabilities (84.9%); advocacy for disability rights (72.1%); rehabilitation (60.5%); inclusive development (58.1%) and community development work (43.0%). a key omission of the researchers was not to include ‘social inclusion’ as a response option. table 3: important aspects of community-based rehabilitation (n = 86) (multiple responses allowed). participants were asked about their understanding of the word ‘community’ in the context of cbr. the majority of respondents (55.3%) indicated that community refers to both a geographical community and those who have similar characteristics or interests. the survey also explored the notion of beneficiaries of cbr programmes. of the nine options, the most frequently selected responses were children and youth with disabilities (70.7%) and families of people with disabilities (68.3%), while the least frequently chosen beneficiaries were community leaders, community-based organisations and community members (table 4). table 4: beneficiaries of community-based rehabilitation programmes (n = 82) (multiple responses allowed). in this survey, participants were asked to select entities that they thought should fund cbr in south africa (choosing as many as they liked from a list of 12 options). the results (n = 83) indicated that the most frequently selected entities were government departments. the ngo option for funding cbr is substantially lower than ‘government departments’ (table 5). table 5: funders for community-based rehabilitation programmes in south africa (n= 83) (multiple responses allowed). the role of persons with disabilities in community-based rehabilitation seventy-four of 86 participants responded to an open-ended question (question 9) concerning the role of persons with disabilities in cbr. thematic analysis of the responses yielded three broad themes as described below. requirements for the involvement of persons with disabilities in community-based rehabilitation an ngo employee indicated that persons with disabilities must have ‘a role that ensures their voice is being heard and implemented in the cbr programme’. expanding on the theme of prerequisites for the involvement of persons with disabilities in cbr, an employee of an ngo stated: ‘no one understands the needs of the person with disability as well as the person himself [sic]. it is vitally important that no decisions are made without their active involvement.’ several respondents mentioned that persons with disabilities might need some training, education or skills development to play a role in cbr. core principles of community-based rehabilitation one academic, researcher and activist described the core role of people with disabilities as follows: ‘engaged citizenship is a core feature of democracy…the uncrpd, the world report on disability, the mdg’s etc. and other policy guidelines reiterate the deconstruction of “professional” hegemony… how can any “project” (which in itself is not cbr) even be conceived without pwd taking the forefront?’ (participant 43, academic, activist) actual roles of persons with disabilities in community-based rehabilitation programmes many participants identified specific roles of persons with disabilities in cbr programmes. these roles included involvement throughout the life cycle of the programme, from planning and designing to implementation, monitoring and evaluation. also taking a role in designing cbr programmes and monitoring them, persons with disabilities were clearly seen as beneficiaries in a more or less active role: ‘the agenda, needs and concerns of disabled people are as diverse as any other “group” and this is a challenge particularly if the beneficiaries choose to lead projects themselves. consulting with users/beneficiaries is an important part of any service, project etc. though.’ (participant 80, researcher, therapist) several respondents mentioned advocacy and awareness-raising as an important role for persons with disabilities: ‘as beneficiaries they need to advocate for themselves to different govt. [government] departments to access their rights’ (occupational therapy technician). another common response was that persons with disabilities should engage in peer support or counselling, and form their own support groups within a cbr programme. an important role of persons with disabilities was described as follows: ‘they should be watchdogs – make sure that funding goes to the people that need the rehabilitation and not to the organisations that do it’ (person with a disability who is also a parent of a disabled child). some respondents indicated that the various active roles that persons with disabilities play in cbr programmes would lead to sustainability of those programmes. general comments on community-based rehabilitation in south africa the final open-ended question in the survey elicited general comments on cbr in south africa illustrating participants’ knowledge of cbr. fifty-two out of 86 participants (60.5%) responded to the question with a wide range of comments and issues. community-based rehabilitation in the context of south africa a researcher and therapist was particularly concerned about the efficacy of cbr in the south african context of poverty and unemployment: ‘i have concerns that the attitudinal shift re: disability that cbr tries to address is a bigger societal issue than individual cbr projects can address. for example, disabled children will never be truly included in mainstream education whilst mainstream education is being so poorly provided generally, and perhaps the same kind of principle applies when encouraging disabled people to voice their needs and uplift themselves in areas where there is a much bigger picture of poverty, lack of schooling, lack of jobs etc.’ (participant 80, researcher, therapist) the national context of historical contestations on the implementation of cbr was also of concern to a government official: ‘the debate on cbr in south africa is derailed by a narrow definition of cbr limiting it to the cadre that should provide it and not the conceptual underpinnings of the strategy. far too often the responsibility has been placed under health whereas all literature is clear on the cross-cutting nature of the strategy.’ (participant 84, government official, national) the status of community-based rehabilitation in south africa several respondents were concerned that cbr projects or programmes were either not visible or did not exist in various areas of south africa. as a community rehabilitation facilitator put it: ‘i have struggled to come across practical examples of how cbr has been implemented in south africa. completely underestimated and not publicized enough. people who are not in the health sector don’t know about cbr.’ (participant 20, therapist, kwazulu-natal) this may explain why the majority of respondents to the survey were therapists, working in the health sector. lack of visibility may contribute to confusion about cbr that seven of the respondents identified. for example: ‘there is mass confusion amongst rehab professionals about cbr, and the term is often loosely used to refer to any rehab service rendered by a professional outside the 4 walls of a hospital.’ (participant 24, therapist, activist) barriers to the implementation of community-based rehabilitation the barriers are closely linked to the status of cbr in south africa and the context of the programmes. for instance, the misunderstanding of cbr, as illustrated above, undermines its implementation, as does the lack of visibility. resource constraints and poor management also impact negatively on the implementation of cbr: ‘all our dpos [disabled people’s organisations] and dpo projects died a slow death while the members were waiting for the money municipality promised them for the projects… those who started [the projects] died because of internal fights regarding the management of the donated funds. (therapist)’ (participant 52, therapist, kwazulu-natal) the value of community-based rehabilitation nine respondents wrote of the difference that cbr could make in the lives of persons with disabilities. one respondent, a researcher, community rehabilitation facilitator and activist related the value of cbr specifically to the empowerment component of the cbr matrix: ‘i believe that the empowerment component of cbr can be a fantastic, cost-effective intervention. i also think that a focus on human rights literacy is essential for holding state services accountable for providing accessible and adequate services.’ (participant 51, community rehabilitation facilitator, activist) opportunities and recommendations for community-based rehabilitation in south africa a number of responses centred on using opportunities for cbr that currently exist in south africa, with the development of national health insurance and the framework and strategy for disability and rehabilitat ion (doh 2016). recommendations were made particularly for the development of human resources in the field of cbr, including government officials, cbr workers and cbr managers. a cbr worker made a specific recommendation for higher education institutions: ‘cbr is a good strategy in south africa, and it should be introduced in detail in higher education, meaning departments that train students to work with persons with disabilities must introduce this concept at an earlier age – not when students are coming for their practical or community block that is only four or six weeks.’ (participant 87, community rehabilitation facilitator, gauteng) discussion the main quantitative findings showed that three-quarters of respondents had some knowledge of cbr, with half attributing this to their academic studies. however, almost a quarter indicated that they were unfamiliar with the cbr guidelines and matrix (who 2010). half of the respondents conceptualised cbr as the facilitation of social inclusion and equal opportunities for persons with disabilities, but only 17.6% viewed it as ‘a strategy for disability-inclusive development’. both advocacy for disability rights and inclusive development featured in the most commonly selected aspects that make up cbr. children and youth with disabilities, as well as families of people with disabilities, were cited most commonly by respondents as beneficiaries, while a quarter saw beneficiaries as being community members and community-based organisations. almost all respondents indicated that funding of cbr is the responsibility of government departments, while just over 40% indicated that ngos should also fund it. the qualitative data revealed a focus on the essential requirement for cbr being the involvement of persons with disabilities, with the core principle that persons with disabilities have a key role to play in decision-making. this involvement needs to occur throughout the life cycle of the programme, including design and monitoring phases. in addition to advocacy and awareness-raising, peer support was seen as a key role to be played by persons with disabilities. respondents identified a range of factors that undermine cbr within the wider context of south africa, including its perception as a health-focused intervention, its lack of visibility and the absence of nationwide implementation. thus, despite the potential value of disability-inclusive development for the empowerment of persons with disabilities, and opportunities emerging from current policy developments, systemic challenges remain, particularly in respect of human resources. the following themes are seen to be relevant to the study findings on the knowledge of cbr in south africa. profile of participants analysis of results needs to take into account the profile of respondents of this study, particularly the fact that over half (53.5%) identified themselves as being therapists. the authors acknowledge that the skewed sample could be attributed to a limitation of this study, namely the method of recruiting participants, being an electronic survey of various stakeholders, including those reached through the database of rural rehab south africa. as a result, very few persons with disabilities and parents of children with disabilities were respondents, a critical limitation given the central role that they have to play in disability-inclusive development. knowledge of community-based rehabilitation and source thereof from the responses received through the survey, it is evident that respondents seem to have moved away from the conceptualisation of cbr as predominantly dealing with health and rehabilitation issues. however, participants’ knowledge of cbr does not reflect international developments in the field, particularly in respect of the definition of cbr as a strategy for disability-inclusive development, which captures the conceptualisation of cbr in the guidelines (who 2010). this study confirms that academic and training institutions are a key source of knowledge about disability-inclusive development, and thus the equipping of personnel with the necessary skills, knowledge and attitudes is a challenge that they need to address. furthermore, because awareness is also gained through exposure in their own work, the practice of disability-inclusive development needs to be infused into all relevant sectors. this may be supported using tools from the disability and development fields that are based on the who cbr guidelines, for example in programme evaluation and funding frameworks. beneficiaries in this study, the majority of respondents saw the primary beneficiaries of cbr as being persons with disabilities and their families. the least frequently chosen beneficiaries of cbr programmes were community leaders, community members and community-based organisations. this may be related to the phrasing of the question in the survey. it may also indicate an aspect of the conceptualisation of cbr that needs to be discussed and developed further among stakeholders. in the study by booyens, van pletzen and lorenzo (2015), community disability workers specifically highlighted the importance of working with traditional community leaders to influence their attitudes towards persons with disabilities and improve their social inclusion. disability-inclusive development cannot be achieved without the involvement of the broader community and therefore it is essential that if the framework and strategy for disability and rehabilitation (doh 2016) is to be fully implemented in south africa, stakeholders must understand the role and value of community leaders and other community members. role of government and civil society various iterations of cbr by the ilo et al. since 2004 have included the need for collaboration between different sectors, such as health and education. in addition, both government and ngo actors reportedly have roles to play in disability-inclusive development. in some countries, there are state-funded cbr programmes from different sectors, while in other countries cbr is mainly funded by international (and sometimes local) ngos. in discussing the sustainability of cbr, the cbr guidelines (who 2010) compare the relative benefits and drawbacks of government-supported or government-led cbr programmes with those led or supported by civil society. while government-supported programmes may make community participation and ownership more difficult, they can provide a more stable source of funding that is also important for sustainability. in response to the question of who should fund cbr in south africa, the vast majority of responses indicated that a variety of different government departments should do so. this may reflect the reality of the difficult funding climate for civil society organisations in south africa. with the development of national health insurance in south africa, there is an opportunity for some provision of disability-inclusive development to be covered by the doh. however, there is the danger that programmes funded through national health insurance will focus on the health component, to the exclusion of work in the education, livelihood and, to some extent, social and empowerment components of cbr, as these do not fall within the line functions of the doh. iemmi et al. (2016) describe cbr programmes as those that have interventions in one or more of the components of the cbr matrix and respond flexibly to the needs of the users of the service. currently, there is no funding model for disability-inclusive development in south africa across different government departments. if cbr is only funded through the doh, disability-inclusive development programmes could well struggle to be flexible and diverse, and to have a holistic approach to persons with disabilities. role of persons with disabilities the maxim ‘nothing about us without us’ is central to the uncrpd and the white paper on the rights of persons with disabilities, as well as being a premise on which the cbr guidelines are based. while the majority (84.9%) of respondents expressed knowledge of the importance of the role of persons with disabilities in disability-inclusive development, it was not possible to establish the extent to which such involvement actually materialises. indeed, the methodology of this study itself illustrates some of the challenges of ensuring such involvement. it is therefore essential to move beyond the ‘knowledge’ that persons with disabilities and their families need to be key decision-makers and shapers of disability-inclusive development, to fostering the necessary values, skills and structures to ensure that this actually happens in a meaningful way. this implies that training programmes and tertiary institutions equipping participants in disability-inclusive development need to include in their curricula not only inputs from persons with disabilities and parents of children with disabilities, but also the skills to facilitate such involvement. factors impeding disability-inclusive development in 2006, rule, lorenzo and wolmarans observed a lack of visibility of existing cbr programmes and a lack of published data on what works and what does not work in the south african context. they identified the urgent need to raise the profile of cbr in south africa. unfortunately, several comments in the survey conducted 11 years later indicated that this has not yet been achieved. while many of the respondents in this study had knowledge of cbr, there are many additional issues that need to be addressed if disability-inclusive development is to be implemented nationally as part of the white paper on the rights of persons with disabilities (department of social development 2015) and the framework and strategy on disability and rehabilitation (doh 2016). one such issue is the question as to whether disability-inclusive development is only for the disability community or whether it applies more broadly. it will be important to promote an understanding of disability-inclusive development as a broad strategy addressing empowerment, livelihoods, education and social aspects, as well as health and rehabilitation. this also impacts government, which currently has no mechanism or provision for intersectoral budgeting for disability-inclusive development in south africa. limitations of the study there were two major limitations of this study: firstly, this was a rather simple survey that was not representative. the majority of the participants in the research were therapists and only a small number were persons with disabilities and parents of children with disabilities. use of the database of rural rehab south africa to recruit respondents meant that mainly therapists were targeted by the survey. furthermore, the mode of response to the survey (requiring internet or email access) is likely to have limited the number of respondents from categories other than therapists, academics and researchers. secondly, the questionnaire was not tested for reliability and validity. a means of addressing these limitations could be to set up a comprehensive database of disability-inclusive development stakeholders in south africa, from which sampling could take place in further research. in addition, future studies should use telephonic interviews to help overcome the limitation of the representativeness of the sample, as many of the under-represented groups may not have had access to email or have felt comfortable to express themselves in writing in response to the questions raised. it is important to identify what was measured in this study. the main ambition was to map certain aspects of stakeholders’ knowledge of cbr in south africa. the focus was on knowledge of information and facts while recognising that it was not possible to assess the understanding or application of this knowledge through an electronic survey. it is thus recommended that further in-depth research should be conducted, using methods such as case studies to document how current knowledge of disability-inclusive development manifests in practice. it is recognised, however, that knowledge and understanding of disability-inclusive development are not the only factors that shape service provision. other factors, including training and resource allocations, can enhance or impede its implementation. conclusion and recommendations the main message from this study is that the implementation of cbr in south africa, and through cbr ensuring the rights of persons with disabilities, is negatively affected by the confusion attached to the understanding of what cbr is in south africa. in their literature review, cayetano and elkins (2016) claimed that one of the major barriers to cbr in the asia-pacific region has been the lack of understanding of cbr by professionals and cbr workers, and specifically a misunderstanding of the purpose of cbr. while many participants in this study demonstrated at least some understanding of cbr in the form conceptualised in the cbr guidelines, there is still a lack of consistency in their responses regarding the nature of cbr. to overcome barriers and ensure the implementation of disability-inclusive development in south africa to promote human rights and the implementation of the uncrpd and the white paper on the rights of persons with disabilities (department of social development 2015), the authors recommend building greater awareness of cbr as conceptualised in the cbr guidelines through: publicising and promoting working models of cbr in south africa that adhere to the cbr guidelines. providing training on cbr to stakeholders already in the field, including disabled people’s organisations, organisations of parents of children with disabilities, service providers and government officials. ensuring that all academic and practical training of therapists, social workers and other professionals includes up-to-date conceptualisations of cbr. acknowledgements the authors would like to thank the finnish evangelical lutheran mission for funding create to do this study. the authors are also grateful to the following colleagues in create: bongiwe zuma for assisting with conducting the research and kate sherry for giving feedback on drafts of the article. competing interests the authors declare that they have no competing interests. authors’ contributions s.r. obtained funding for the study, conceptualised the study, designed the survey tool, helped to analyse the data and wrote the article. a.r. helped to conceptualise the study, analysed the data and wrote sections of the article. p.m. helped to conceptualise the study, provided databases to contact respondents, helped to analyse the data and improved the article after review. s.p. helped to conceptualise the study, refined the survey tool, analysed the data and improved the article after review. ethical considerations informed consent, anonymity, confidentiality and ability to withdraw from the study at any point were adhered to in this article. funding information funding for this study was obtained from the finnish evangelical lutheran mission. data availability statement new data were generated in the survey and can be made available on request. disclaimer the views and opinions expressed 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been an aspect of rehabilitation in the health sector in south africa. internationally, cbr has undergone a number of changes, but we have no data on how cbr is currently understood in south africa. by responding to this survey, you will be assisting us to determine how people in south africa understand cbr now. in this survey you will find questions that are optional as well as those to which responses are required (marked with an asterisk). by completing the survey you are giving consent for your responses to be included in the results. however, create undertakes to ensure that your identifying information will not be linked to your responses nor will it be revealed to anyone except the researchers. *1. which of these terms describes you best? (select all applicable) □ person with a disability □ parent of a child with a disability □ student □ academic □ researcher □ therapist □ community rehabilitation facilitator or worker □ government official □ activist □ employee of a non-government organisation □ other (please specify) *2. have you ever been exposed to the concept and/or practice of community-based rehabilitation in south africa? □ not at all □ through your own work □ through the work of others you know □ as a beneficiary of a community-based rehabilitation programme □ through academic studies □ through the internet □ through reading books and articles □ other (please specify) *3. are you familiar with the world health organization’s cbr guidelines and cbr matrix? □ not at all □ theoretically □ as a practitioner □ as a beneficiary of a community-based rehabilitation programme □ as a researcher □ other (please specify) 4. which definition of community is most appropriate for community-based rehabilitation in south africa? □ a group of people with common interests or characteristics, for example, disability □ a group of people who live in a particular geographic area □ both of the above □ other (please specify) 5. in your understanding, what are or would be the five most important aspects of community-based rehabilitation? □ inclusive development □ involvement of people with disabilities □ peer counselling □ health-related interventions □ advocacy for disability rights □ education-related interventions □ rehabilitation □ outreach □ referral to other resources □ community development work □ poverty reduction □ other (please specify) *6. please select the statement that most closely represents your view of community-based rehabilitation. □ a decentralised mobile outreach rehabilitation programme □ a rehabilitation strategy that offers intervention services to a particular community □ a strategy for disability inclusive development □ a rehabilitation programme that offers peer counselling and basic skills □ a programme that facilitates social inclusion and equal opportunities for persons with disabilities □ don’t know □ other (please specify) 7. who should be the beneficiaries of a community-based rehabilitation project or programme? select the four most important beneficiaries. □ community leaders □ marginalised and low income people with disabilities □ community-based organisations □ children and youth with disabilities □ adults with disabilities □ families of people with disabilities □ parents or caregivers of children with disabilities □ community members □ disabled people’s organisations □ other (please specify) 8. if there are to be community-based rehabilitation projects or programmes in south africa, who should fund them? (select as many responses as applicable) □ department of health □ department of education □ department of labour □ department of cooperative governance & traditional affairs □ department of social development □ municipality □ disabled people’s organisation □ organisation of parents of children with disabilities □ non-government organisation □ academic institution □ none of the above □ other (please specify) 9. what role should persons with disabilities play in a community-based rehabilitation project? 10. please record any comments you have on community-based rehabilitation in south africa. 11. please supply your contact details if you wish to participate further in the research on community-based rehabilitation in south africa. name: province: email address: phone number: we would like to get a picture of community-based rehabilitation throughout south africa. we would appreciate it if you could direct us to any cbr projects or programmes you know of. 12. contact details for community-based rehabilitation projects or programmes in south africa name of cbr project or programme: province: email address: phone number: thank you for assisting us by completing this survey. please contact create with any queries at create3@telkomsa.net. abstract introduction methods results discussion conclusion acknowledgements references about the author(s) anand mhatre human engineering research laboratories, department of veterans affairs, pittsburgh, united states department of rehabilitation science and technology, university of pittsburgh, united states international society of wheelchair professionals, university of pittsburgh, united states joseph ott human engineering research laboratories, department of veterans affairs, pittsburgh, united states department of rehabilitation science and technology, university of pittsburgh, united states international society of wheelchair professionals, university of pittsburgh, united states jonathan pearlman human engineering research laboratories, department of veterans affairs, pittsburgh, united states department of rehabilitation science and technology, university of pittsburgh, united states international society of wheelchair professionals, university of pittsburgh, united states citation mhatre, a., ott, j. & pearlman, j., 2017, ‘development of wheelchair caster testing equipment and preliminary testing of caster models’, african journal of disability 6(0), a358. https://doi.org/10.4102/ajod.v6i0.358 original research development of wheelchair caster testing equipment and preliminary testing of caster models anand mhatre, joseph ott, jonathan pearlman received: 15 dec. 2016; accepted: 22 aug. 2017; published: 28 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: because of the adverse environmental conditions present in less-resourced environments (lres), the world health organization (who) has recommended that specialised wheelchair test methods may need to be developed to support product quality standards in these environments. a group of experts identified caster test methods as a high priority because of their common failure in lres, and the insufficiency of existing test methods described in the international organization for standardization (iso) wheelchair testing standards (iso 7176). objectives: to develop and demonstrate the feasibility of a caster system test method. method: background literature and expert opinions were collected to identify existing caster test methods, caster failures common in lres and environmental conditions present in lres. several conceptual designs for the caster testing method were developed, and through an iterative process using expert feedback, a final concept and a design were developed and a prototype was fabricated. feasibility tests were conducted by testing a series of caster systems from wheelchairs used in lres, and failure modes were recorded and compared to anecdotal reports about field failures. results: the new caster testing system was developed and it provides the flexibility to expose caster systems to typical conditions in lres. caster failures such as stem bolt fractures, fork fractures, bearing failures and tire cracking occurred during testing trials and are consistent with field failures. conclusion: the new caster test system has the capability to incorporate necessary test factors that degrade caster quality in lres. future work includes developing and validating a testing protocol that results in failure modes common during wheelchair use in lre. introduction there is an estimated unmet need of 95 million wheelchairs worldwide (borg & khasnabis 2008; handicap international 2013; mhatre et al. 2017; world health organization 2011). to address this need in less-resourced environments (lres), various international organisations such as the world health organization (who), united nations (un), united states agency for international development (usaid) and international society of wheelchair professionals (iswp) are promoting increased access to appropriate wheelchairs (borg & khasnabis 2008; international society of wheelchair professionals 2015; united nations 2006; united states agency for international development 2016). the un launched the convention for rights of people with disabilities (crpd) in 2006, and article 20 of the crpd highlights the need for access to appropriate and high-quality mobility aids that include wheelchairs (united nations 2006). during the same year, a consensus conference was held that brought together groups involved in the provision of wheelchair services in lres and wheelchair experts to discuss wheelchair needs and issues with products and services (sheldon & jacobs 2006). the outcomes of this conference influenced who in developing the guidelines on provision of manual wheelchairs in less-resourced settings (who guidelines) and the wheelchair service training packages in partnership with the usaid (borg & khasnabis 2008; world health organization 2012, 2013). recently, the who in collaboration with the un and usaid initiated the global cooperation on assistive technology (gate) programme to accelerate crpd initiatives (world health organization 2014) and published a priority assistive products list that emphasises the access for high-quality products and recognises four distinct wheelchair designs as appropriate products for provision. provision of appropriate wheelchair designs has been advocated for by the who guidelines too. furthermore, recommendations by the who have guided the development of wheelchair-related initiatives of iswp. iswp aims at benefitting both wheelchair users and providers by promoting wheelchair provision training and research activities, improving wheelchair design and manufacturing and coordinating wheelchair sector services. iswp initiatives are guided by an advisory board consisting of international wheelchair experts, and there are several working groups that develop and implement action plans for improving services and products. iswp is currently developing and conducting wheelchair provision knowledge and skills tests internationally, developing tools and resources for wheelchair users and providers, collaborating with various organisations internationally and creating awareness in the wheelchair community to enhance the overall quality of wheelchair services and thereby addressing the unmet need for wheelchairs in lres (international society of wheelchair professionals 2015). there are several challenging issues in lres related to wheelchair policies, services, products and awareness, and one of the greatest concerns is quality of products. most lres fall in the tropical zone (monk & wee 2008) and experience high temperature and humidity, which adversely affects product quality. moreover, outdoor terrains and wheelchair use conditions evident in lres impose greater quality requirements on products, which are known causes for wheelchairs to fail prematurely (constantine, hingley & howitt 2006; hotchkiss 1985; mukherjee & samanta 2005; saha et al. 1990; sheldon & jacobs 2006; shore 2008; shore & juillerat 2012). wheelchair casters specifically are a common point of failures as wheelchairs travel over rocky terrains, debris and face inclement weather. a variety of caster designs are used on wheelchairs (see figure 1), and the demanding operating conditions in lres cause these casters to fail in different modes as shown in figure 2. figure 1: different caster designs used on wheelchairs. figure 2: caster assembly failures witnessed in the field. caster quality issues have been found during standardised wheelchair tests published by the international organization for standardization (iso). iso 7176 standard section 8 refers to durability testing of wheelchairs that includes static, impact and fatigue tests (international organization for standardization 2014). fatigue tests subject wheelchairs to 200 000 drum revolutions (or test cycles) during multi-drum tests (mdt) and 6667 drops during curb-drop tests (cdt) (see figure 3). casters are known to undergo fracture failures throughout such tests. fractures with caster’s vertical stem assemblies are common (cooper et al. 1996, 1997; cooper, boninger & rentschler 1999; cooper, stewart & vansickle 1994; fitzgerald et al. 2001; kwarciak et al. 2005). fractures with the caster fork, bearings and wheel spokes have been reported too, as have alignment issues with the caster wheel (cooper et al. 1994, 1996; toro et al. 2013). additionally, failures and repairs with casters have been noted in field studies that evaluated usability and performance of wheelchair products (armstrong, reisinger & smith 2007; mukherjee & samanta 2005; reese & rispin 2015; saha et al. 1990; shore & juillerat 2012; toro et al. 2012). in one study, casters were found to be a constant source of worry; saha et al. (1990) reported breaking caster wheels and forks, missing tires and bolts, locking of the casters while rolling, bearing failures and excessive caster vibration with lreproduced chairs. casters sinking into soft ground and failure while climbing over obstacles were some of the performance issues caused by inappropriate product design. premature wheelchair breakdown occurred, as casters were found to not last more than 6 months (saha et al. 1990). in another study, caster tires were found to crack and wear within 1–2 years of use (reese & rispin 2015). most caster failures are known to cause user discomfort, adverse incidences such as accidents leading to user injuries and wheelchair breakdowns (gaal et al. 1997; saha et al. 1990). in the lre context, broken parts are often difficult to repair or replace. lack of resources (rehabilitation services and skilled labour), availability of replacement parts, user training during provision and awareness create challenges for user maintenance, servicing and repair (borg, lindström & larsson 2011; pearlman et al. 2008). product breakdowns can cause long-term loss of mobility, because users in lres often do not have a back-up wheelchair (hotchkiss 1985). this in turn has multi-dimensional consequences for the user, including reduced satisfaction and likelihood of wheelchair abandonment (fitzgerald et al. 2005; phillips & zhao 1993). figure 3: multi-drum test (left) and curb-drop test (right) without test dummies. to facilitate the necessary provision of high-quality wheelchairs and casters, the who guidelines suggest products undergo iso 7176 standard wheelchair testing prior to their sale and distribution. furthermore, to address the diverse and demanding lre conditions, the who guidelines recommend the development of additional tests (borg & khasnabis 2008). while the purpose of such testing is well understood, there are no clear directions on the design and development of these tests. the development work for additional tests was taken up by iswp’s standards working group (iswp-swg), which includes wheelchair experts that have considerable industry and fieldwork experiences in lres (mhatre et al. 2017). this group was formed to enhance product quality, as well as to develop standards and resources to promote appropriate high-quality products for delivery in lres. among the additional tests that the group has proposed, caster durability testing was ranked (through consensus voting) as one the most critical areas for testing (mhatre et al. 2017). this article covers the design process followed by the iswp-swg for developing new caster testing equipment and the preliminary testing that was conducted with different caster designs. methods the development of additional tests commenced in early 2015 after the iswp-swg discussed the concept. the group members reported several wheelchair parts failures evident in lres, identified factors that contribute to field failures and evaluated whether these factors are included in iso 7176 fatigue tests of mdt and cdt. the results of this evaluation for casters demonstrated the lack of requisite test factors in standard testing of caster assemblies which implied developing a new testing method. for developing additional tests, the iswp-swg was divided into subgroups and the caster testing subcommittee led the development of new caster testing method. searches were conducted for standards available for caster assembly testing. the results were obtained and reviewed by the authors for relevant testing methods. other testing methods for wheelchair casters were retrieved from literature review work conducted by the authors previously (mhatre et al. 2017). iswp-swg members reported on caster testing systems developed by wheelchair manufacturers. testing methods retrieved from different sources were evaluated for presence of testing factors pertaining to lre conditions. the result of this search process informed the group that a new testing system needs to be developed. the caster test design process began with iswp-swg experts putting together the functional requirements for the new testing method. the requirements were based on the gaps in current caster testing methods (iso and other standards) and the expected testing conditions corresponding to lre use. the members of the caster testing subcommittee developed design concepts accordingly. feedback on the designs was taken in three steps. firstly, through iswp-swg discussions, the advantages and disadvantages of each concept were discussed in detail and a single design for further development was selected. secondly, the designs were drafted in detail and a second round of feedback was conducted through an in-person meeting with all iswp-swg experts. design recommendations were provided. finally, the design was refined according to the recommendations, benchmarked to mdt test conditions, and further feedback was sought from the machine shop staff at the human engineering research laboratories (herl, pittsburgh, usa) where the final design was to be fabricated. following approval from different contingents, the equipment was fabricated at herl over a period of 2 months. to evaluate testing feasibility and efficiency of the new equipment, models of casters differing in sizes and parts’ designs were tested initially. four caster models were tested for defined number of test cycles under known weight. as impacts in the field are at different angles, casters were subjected to oblique slat impacts, except one model which was tested for square slat impact (with slats fixed at zero-degree angle). following reliable performance of the new equipment, a preliminary testing study was carried out with six caster models to evaluate effect of straight versus oblique slat impacts on durability of caster assemblies. four samples of each model were tested. for each model, two samples were subjected to square impacts (zero degrees) and the other two to oblique impacts at 30 degrees (±1.5% error). casters were tested under known weight until failure in this study. a paired samples t-test was used to compare test cycles completed with the two slat angle conditions for each model. caster assembly failures were documented and analysed. feedback was sought from respective caster manufacturers about the failures seen on the caster test. results of this testing informed the caster testing subcommittee of necessary modifications to the caster testing protocol. results field failures of caster assemblies outdoor conditions leading to field failures of casters were identified by iswp-swg experts. comparing different test factors corresponding to each outdoor condition with the testing conditions on iso 7176 fatigue tests of mdt and cdt yielded results as seen in table 1. several test factors of interest were not included in standards testing. table 1: caster assembly failure modes and corresponding quality-affecting factors as seen in the field. review of caster standards, testing literature and existing test methods caster testing standards have been published by the iso and the american national standards institute – institute of caster and wheel manufacturers (ansi-icwm) (institute of caster and wheel manufacturers 2012). iso 22877-82 covers standards for casters for institutional use such as furniture and swivel chairs for use in shops, restaurants, hotels, educational buildings and hospitals (international organization for standardization 2004b). iso 22883-84 is suitable for casters used in industrial environments (international organization for standardization 2004a). the iso standards contain methods for fatigue and performance testing of caster braking systems, but testing methods for durability testing of the entire caster assembly have not been included. the ansi-icwm standards contain static load tests, side load tests and vertical impact tests for industrial and institutional casters (institute of caster and wheel manufacturers 2012). dynamic tests are included, and they qualify as durability tests. they require casters to roll over obstacles (obstacle height based on caster diameter) and multiple track configurations that include a linear track, circular track (horizontal position) and circular track (vertical position). testing methods that were found in the literature are listed in figure 4. figure 4: caster test methods reported in the literature. the development of caster testing machines by two wheelchair manufacturers was reported by iswp-swg members. these included weighted casters mounted on a drum with a slat (similar to mdt test) (figure 5). however, caster testing methods with appropriate test factors relevant to field use in lres were not found in the standards, literature or any searches. figure 5: caster testing drum equipment with wheelchair manufacturers. development of new caster test system following review of existing caster testing methods, the iswp-swg decided on developing new caster assembly testing equipment which could incorporate relevant testing factors. outcomes from comparison in table 1 assisted in developing the functional requirements of the new system. they are as follows: the new testing system subjects casters to straight and oblique impacts. the new testing system exposes casters to a variety of surface patterns to simulate lre terrains. replacing a surface during testing should be easy and require minimal time and effort. the new testing system exposes casters to moisture/water to simulate corrosion failures. the new testing system tests casters of different designs at the same time for comparison testing. to simulate appropriate caster behaviour, the new testing mounts caster for testing similar to the way it is mounted on its wheelchair. the new testing system is flexible to change speed and direction during testing. the optimal speed recommended for this test was 1 m/s (same as mdt). the new testing system allows a range of weights for loading on casters. the new testing system includes an accelerated wear test for casters. the new testing system replicates failures as seen in the field. the caster testing subcommittee members developed design concepts based on functional requirements. six concepts were proposed (see table 2) and modelled for initial evaluation by the iswp-swg. advantages and disadvantages of each were discussed for selecting an appropriate concept for design and development. table 2: design concepts evaluated by the iswp-swg experts. the selected concept #5 (turntable system design) was drafted in solidworks (dassault systèmes solidworks corporation 2016) and was reviewed comprehensively in an in-person meeting with iswp-swg. design recommendations (table 3) on the turntable and caster mounting were provided by the group and were prioritised for incorporation into the design (see figure 7). figure 6: caster assembly test design concepts #4 (left) and #5 (right). figure 7: turntable design concept. table 3: design recommendations by iswp-swg for turntable test design. the authors benchmarked the design with mdt test, developed design specifications (see table 4) and modified the design accordingly. one rotation of the turntable is twice the distance the caster would travel on mdt. table 4: specifications of multi-drum tests and new caster assembly test design. feedback from machine shop staff at herl was related to operation and fabrication of the test equipment. three important suggestions were received as below. include a gearbox (speed reducer) for rotating the turntable. deploy corrosion resistant rollers beneath the turntable to reduce the risk of rusting. figure 8 shows the final drawing prior to fabrication and assembly of the caster test equipment. place crossbars under the turntable assembly to strengthen the equipment foundation and reduce any movement between the vertical angle iron bars. figure 8: final caster test equipment drawing for fabrication (includes only one of four possible caster support arms). caster test equipment description the test equipment can be divided into four modular designs: (1) drive system, (2) supporting frame, (3) turntable assembly and (4) caster arm assembly. drive system the drive system consists of a motor, gearbox, motor driver and system controller connected to an lcd display. the gearbox and motor selection were based on the power requirements and functionality of the test. a 2hp reversible induction motor (model# mtr-002-3bd18) from automation direct (automation direct 2016), 40:1 ratio gearbox (model# 13-325-40-r) from surplus center (surplus center 2016a), ac motor drive (model# fm50) from teco westinghouse (surplus center 2016b) and a micro820 programmable logic controller system from allen bradley (rockwell automation inc. 2016a) were selected. the motor driver was programmed manually based on the direction and speed requirements of the turntable system, and the system controller was programmed using the connected components workbench (rockwell automation inc. 2016b). three different programmes were developed – (1) one directional turntable rotation similar to mdt; (2) one directional rotation with a reverse cycle after a specific number of turns; (3) a continuous clockwise/counter clockwise rotational movement of the turntable. the lcd display shows the test programme, the status of test and the number of test cycles completed. the motor driver, the system controller and the lcd display are housed in an enclosure as shown in figure 9. figure 9: controller box of the caster test system (left) and lcd display (right). supporting frame the frame consists of four vertical angle iron bars of 4½ inch height that are connected by a web of steel square tubes and angle irons on the top and below the turntable. the top web supports the motor, gear reducer and flanged bearing, and the one below the turntable supports the rollers and shaft bearing housing. to strengthen the foundation and eliminate movement of vertical bars, flat steel crossbars have been attached. turntable assembly the turntable (figure 10) is a 40-inch diameter circle cut from ¾ inch aluminium plate. the turntable is connected to the gearbox with a long shaft through a flange-mounted ball bearing (for support) and a replaceable-center flexible shaft coupling. the shaft is mounted on a thrust bearing under the table. polyurethane rollers support the turntable rotation from underneath and absorb the impact from casters bouncing on the turntable. flange couplings attach the turntable to the shaft. pie-shaped pieces 8½ inches thick are clamped to the turntable on top. they serve as plates for accommodating different surface patterns and are currently used for holding slats at desired angles. figure 10: turntable assembly with pie-pieces (only one slat mounted to pie-piece). caster arm assembly initial design of the assembly included a 2-inch thick caster arm attached to a vertical member that could slide on a block holding a steel rod as shown in figure 11. the caster’s stem bearing assembly (to be tested) is accommodated inside a housing attached to the arm, and barbell weights are mounted on top of the arm. the arm hinges on the rod that has its ends clamped to the angle iron uprights, and the position of the rod can be adjusted vertically along the length of those uprights. the maximum wheelchair axle height that can be simulated is about 22 inches. the initial arm design was not flexible enough to position caster designs of variable diameters on the orthogonal axis of the turntable; therefore, the design was revised (see figure 11) with 8020 components (80/20 inc. 2016). figure 11: initial design (left) and revised design (right). fracture failure of casters during testing causes the caster arm to collapse and fall on the turntable crushing the caster or damaging the turntable. to immediately detect the fall, a limit switch with rotating lever is mounted above each of the caster arms and strings are used to connect the lever from the limit switch to an eyebolt on the arm. for appropriate detection of failure and avoiding any damages, a safety strap is used to prevent a vertical drop of the arm after a failure and hold the arm while the limit switch is triggered. figure 12 shows the new caster testing equipment that was fabricated and assembled. the parts were powder-coated green and black for aesthetic appeal and to reduce the risk of corrosion. figure 12: iswp caster assembly test. feasibility testing results four caster designs with solid tires as shown in figure 13 were tested first. this initial testing to verify reliable performance of the new test equipment was conducted with 20 lbs ± 1 lbs weight on each caster and 100 000 test cycles. a total of 100 000 cycles was chosen as it is equivalent to 200 000 mdt cycles which is the minimum qualification requirement for wheelchairs (international organization for standardization 2014). results from initial testing are shown in figure 14. figure 13: caster assemblies tested in initial testing phase. figure 14: results from initial testing of caster assemblies. preliminary testing results preliminary testing to evaluate the effect of square versus oblique slat impacts was conducted with 31% ± 1% lbs weight on caster models (see figure 15) and 500 000 cycles. caster design c from feasibility testing was used in this study because of availability of samples. weight selection was based on iswp-swg recommendations and the availability of weight plates because weight carried by casters typically ranges between 20 and 40 lbs (caspall et al. 2013; kauzlarich et al. 1984; lin, huang & sprigle 2015; sauret et al. 2011). a total of 500 000 test cycles was selected because mdt testing until failure is conducted until 1 million cycles, which is five times the minimum number of required cycles for testing (cooper et al. 1996; kwarciak et al. 2005). to avoid caster shimmy during testing, stem assemblies were tightened such that the casters would not lock and would reverse their direction smoothly when the turntable was reversed during the test setup. additionally, for the preliminary test, the casters were placed away from the turntable centre at 11.5-inch radius which simulated about 3 years of regular travel at 1 m/s assuming an average user travels about 800 m/day (caspall et al. 2013). results of preliminary testing and manufacturer feedback on failures are shown in figure 16. among the caster models, no significant differences were found between the number of cycles completed with square and oblique slat impacts (p > 0.05). figure 15: caster assemblies tested in preliminary testing study (model a is not shown). figure 16: preliminary testing results with different caster designs. discussion less-resourced environments demand greater durability from wheelchair products. for this reason, the who guidelines recommend rigorous quality evaluation through tests that simulate lre conditions (borg & khasnabis 2008). development of such tests has been undertaken by the iswp-swg and the group has prioritised caster durability testing owing to frequent caster failures. review of testing methods for casters showed that several standard tests are available. iso 7176 durability tests – mdt and cdt – are tests with reportedly good repeatability and subject casters to square slat impacts. drum tests developed by wheelchair manufacturers for testing casters separately are similar. iso and icwm caster testing standards have been published for institutional and industrial casters but they are not applicable to outdoor use of casters with wheelchairs. testing methods reported in literature test casters for durability with mechanical loads and impacts only. these methods did not include exposure to environmental and use conditions as seen in lres which also contribute to the degradation in product quality and consequently failures. none of these tests simulated exposure to different surfaces, high temperature, humidity or ultraviolet (uv) light. deploying such test factors in lab-based accelerated tests is important to reproduce accurate product lifecycle and failures. evaluating caster durability using a new testing method with relevant testing conditions was proposed by the iswp-swg. based on previous experiences, experts deemed it difficult to revise the current iso testing setup. issues noted with such modifications were related to securing different surface patterns on the cylindrical surfaces of mdt drums and enclosing the testing setup in a chamber for environmental testing. thus, the development of a new caster testing system was initiated. functional requirements specified for the new system were largely based on the need for inclusion of environmental testing factors that were lacking in existing testing methods. design concepts that were variations of the reviewed testing methods (icwm standards) with additional design features were considered. of the design concepts proposed for selection, the turntable test design addresses several functional requirements and offers several advantages. implementing testing factors relevant to lre conditions seems feasible on the setup especially with exposure to different surfaces. pie-shaped pieces have the capability to incorporate various surfaces patterns that correspond to uneven terrains and are representative of exposure to muddy ground, gravel, sand and dirt. with the availability of eight pieces, casters can be exposed simultaneously to different surface types. these pieces are clamped to the turntable such that they can be replaced easily in minimal time if change in surface exposure is required. slats can be attached at different angles for simulating straight and oblique hits from bumps and obstacles. exposure to different surfaces and loads conditions in lre is responsible for failures related to tire wear and cracking, and inducing low-cycle fatigue effects in caster parts such as the stem bolt, wheel and bearings. to reproduce such failures, new surface patterns and testing protocols, which are validated to actual outdoor exposure, need to be developed for the new turntable testing setup. caster stem assembly failures are common during field use and standard testing. the quality of stem bearings can be evaluated on the new caster testing equipment because the turntable can reverse its direction – unlike mdt, which has casters run in the direction of wheelchair primary propulsion. the stem bearings can be tested by either having the casters roll in the opposite direction for a certain number of cycles after designated number of forward cycles or having casters continuously change direction with to and fro rotating motion of the turntable. the new test design allows caster exposure to environmental testing factors such as moisture exposure and uv light. to incorporate moisture exposure, immersing casters partially in water in a tank surrounding the turntable was suggested by the iswp-swg members. the water tank addition to the design is yet to be implemented because of concerns regarding controlling for water characteristics such as temperature, oxygen content, level of exposure (which may not be repeatable) and risk of corroding of testing equipment. another suggestion by one of the authors was deploying water sprinklers, which can draw water from a tank under controlled conditions and assist in reducing caster tire temperature during testing. corrosion of caster assembly parts is a top concern, and the failure can be simulated on the turntable design with reasonable modifications. for simulating rapid aging, uv/heat lamps can be mounted beside each caster in an enclosure. degradation of rubber tires and other plastic materials can be simulated in this manner. in sum, the caster testing equipment developed by iswp-swg caters to most functional requirements and has the capability to simulate different testing factors. to incorporate these factors, the test setup requires upgrades as stated previously. four different caster designs were tested to evaluate the feasibility of testing casters with the new system. two caster models (one from a lre wheelchair) completed the minimum number of test cycles, and the others experienced stem bolt fractures with crack initiation at an angle because of oblique hits. these fractures were anticipated failures as they are often seen with mdt. reliable testing with the initial set of casters motivated testing caster assemblies for evaluating the effect of straight versus oblique impacts. the preliminary testing with models from lre wheelchairs (except model b) revealed that slat impact angles do not have any effect on caster durability. however, it should be conceded that the sample size for testing against each condition was small, which could have led to a non-significant result. also, oblique impacts on the caster can have a lesser effect compared with square impacts, as the stem bearings allow the casters to swivel moderately to accommodate the impact. while there was no significant difference in number of cycles between two conditions for each model, the types of failures were relatively consistent. caster size was one of the differentiating factors among models during preliminary testing. casters a and c have smaller diameters comparatively, and model a samples were found to be significantly affected from slat impacts causing stem bolt fractures. stem bolt fractures are typical in caster assembly failures with mdt testing as noted in several wheelchair testing studies (cooper, stewart & vansickle 1994, cooper et al. 1996, 1997, 1999; fitzgerald et al. 2001). these fractures initiate from the bolt surface where the bolt connects with the fork because there is only a minimal cross-sectional area to withstand the moment-force from impacts. another cause for such failure can be grease leakage from lower stem bearings (seen with two casters) that rusts the lower part of the stem bolt and inner bearing rings. the rust-affected area can initiate cracks from the surface. the manufacturer of the model a caster disagreed with the test results as stem bolt failures have not been seen during field use. the strength of caster models was affected by design factors such as tire thickness and hardness as well. while model a tires are pliable, the casters suffered greatly from slat impacts because the sidewall tires are not as thick. all large size casters had significantly greater sidewall thickness, and among them model b was found to be more durable because the tires were able to absorb impacts. tire hardness for caster b and f is 70a while other models have a hardness ranging from 78a to 90a. hard tires were found to transmit the moment-forces from impacts directly to the stem bolt and fork connection, which causes bolts to shear. model b caster parts (especially tire and fork) were reportedly expensive and high-quality and, hence, the casters endured the slat impacts without significant failures. however, this model did experience tire cracking failure after 500 000 testing cycles because of excessive heating of rubber. tire failures such as cracking and wearing are common in the field with model c casters as per the manufacturer. the caster test was able to simulate this failure for model c in the laboratory; however, it should be noted that there are several other outdoor conditions apart from mechanical stress and heat that cause this type of failure. a few caster models were found to undergo fork fractures during testing. three caster c models, despite their sturdy rubber tire design for absorbing impacts, suffered fork fractures. on this model, part of the fork that accommodates the stem bolt includes a thin tube piece and a bent flat metal piece welded to the rest of the fork. this welded assembly is constantly under tension. thus, the fork design is found to shear from fatigue caused by slat impacts. the manufacturer of caster c reported that they have not witnessed fork fractures in the field. model e incurred two fork fractures. its polyurethane tires have 90a hardness and suffer significantly from impacts. the cross-section of the fork where the prongs connect with the centre piece of the fork has less material thickness, which is a cause for fracture. models d and e are from the same manufacturer and have different tire designs and materials. the design of the stem bolt and fork connection is the same; the stem bolt is welded to a metal piece that holds the bolt against the fork. this welded connection was found to be a pain point because the weld cannot endure fatigue. the connection breaks prematurely, initiating a bolt or fork fracture. the rubber tires (85a hardness) on model d experienced rubber chalking which may cause them to gradually thin and eventually etch or crack. the manufacturer of models d and e acknowledged that the failures from preliminary testing were witnessed in the field occasionally, but they were not observed during mdt and cdt. retesting the casters after an upgrade to the fork design was suggested to the manufacturer. stem bearing fractures were observed during preliminary testing, particularly with model f. the top stem bearing is a flanged cup thrust bearing that should accommodate vertical thrust from the caster. however, the outer ring material is made of low-strength steel, which causes these bearings to rupture. this failure happened quite early during testing and the casters were taken off only after they could no longer run vertically straight. the manufacturer of caster f admitted that bearing fractures have been noted in the field but they have happened after a year or two of use. overall, the failures observed with 50% caster models during the preliminary testing study were representative of their field failures. some manufacturers mentioned that their models mostly undergo wear failures in the field, rather than fracture failures. these wear failures can be attributed to rough terrain and environmental factors that wear down the tires and bearings specifically. to reproduce wear failures, the inclusion of additional test factors in the testing protocol is necessary. further, the study results also led the manufacturers to comment that the caster test is more rigorous than standard tests as a majority of the casters failed before 100 000 test cycles which is nearly equivalent to 200 000 mdt cycles (representing 3–5 years of outdoor use). the high magnitude shocks on the caster test result from slat impacts are nearer to the centre of the caster compared to mdt; however, these shocks assisted in exposing the weak links in the caster during the study. failures such as bearing and fork fractures that were witnessed in the field were missed by manufacturers during their standards testing. the high magnitude shocks may be characteristic of lre outdoor use which led to representative fracture failures. still, the feedback about the rigorous nature of the test mandates validation of the test to outdoor shock exposure that can assist in predicting fracture failures more accurately. the iswp-swg plans to conduct a series of validation experiments which will be followed with upgrades to the test equipment and testing protocol. limitations the caster assembly testing was prioritised and developed as a part of additional wheelchair tests based on consensus from the iswp-swg members, which may cause potential expert bias in this study. the caster assembly testing equipment has been developed for testing against several quality-affecting factors; however, casters in the study were only subjected to load testing. there are certain design shortcomings with the equipment: the three-wheeler casters have a longer wheelbase, which cannot be simulated because of space restrictions. exposing the caster to quality-degrading factors like corrosion, high temperatures and uv may potentially cause the testing equipment parts to degrade faster. currently, the casters experience a slight bounce after slat impacts as compared to outdoor use. deploying shock absorbers on the arms can mitigate this. future work the caster test performs durability testing of casters consistently and requires further upgrades for incorporating additional testing factors. the authors plan on validating the shock exposure on caster testing to outdoor shocks by analysing forces and corresponding fatigue experienced by casters in the field, and developing different surfaces on the pie-shaped pieces to replicate the effect. this validation will be followed by the addition of more test factors. for integrating corrosion and environmental wear, casters will be subjected to a cascading testing approach. for example, casters can be exposed to humid conditions for corrosion effect followed by uv exposure at an elevated temperature and then conducting accelerated durability testing with slats or other surfaces. it is anticipated that the integration of additional test factors will produce failures that are representative of field failures. the iswp-swg plans to integrate the caster test into iso standards as a new or add-on standard to iso 7176 or as a technical specification so that they are harmonised with national standards. conclusion wheelchair casters experience premature failures in the lres based on research and anecdotal evidence, which motivated development of a new caster durability test. simulating the demanding outdoor conditions requires the employment of several testing factors during durability testing which are not included in any existing caster testing standards. we reported the results of a newly developed test for evaluating caster assemblies, which have the capability to expose casters to different testing conditions that are necessary for additional testing of wheelchairs as recommended by who guidelines. the test conducts durability testing similar to mdt currently, but on the caster system alone (rather than the whole chairs) and offers a range of additional testing conditions, such as debris, rough terrain and moisture. future work includes implementing these additional testing conditions and comparing failures on the caster test to field failures. acknowledgements the authors would like to thank the iswp standards working group members – norman reese, matt mccambridge, daniel martin, don schoendorfer, eric wunderlich, chris rushman, dave mahilo and mark sullivan – for their contribution to the development of caster testing equipment and continuous support to caster testing protocol development. the author thanks joseph ott for his assistance in design and fabrication of the caster test and stephanie lachell for her valuable help during the preliminary testing of casters. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. 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publications, world health organization, viewed 21 july 2015, from http://www.who.int/disabilities/world_report/2011/en/ world health organization, 2012, wheelchair service training package – basic level, viewed 20 february 2016, from http://www.who.int/disabilities/technology/wheelchairpackage/en/ world health organization, 2013, wheelchair service training package – intermediate level (wstp-i), viewed 20 february 2016, from http://www.who.int/disabilities/technology/wheelchairpackage/wstpintermediate/en/ world health organization, 2014, global cooperation on assistive technology (gate), viewed 19 february 2016, from http://www.who.int/phi/implementation/assistive_technology/phi_gate/en/ abstract introduction methods results discussion limitations and future work conclusion acknowledgements references about the author(s) karen l. rispin department of biology, tourneau university, united states elisa hamm kinesiology department, letourneau university, united states joy wee school of rehabilitation therapy, queens university, canada citation rispin, k.l., hamm, e. & wee, j., 2017, ‘discriminatory validity of the aspects of wheelchair mobility test as demonstrated by a comparison of four wheelchair types designed for use in low-resource areas’, african journal of disability 6(0), a332. https://doi.org/10.4102/ajod.v6i0.332 original research discriminatory validity of the aspects of wheelchair mobility test as demonstrated by a comparison of four wheelchair types designed for use in low-resource areas karen l. rispin, elisa hamm, joy wee received: 24 nov. 2016; accepted: 02 may 2017; published: 08 sept. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: comparative effectiveness research on wheelchairs available in low-resource areas is needed to enable effective use of limited funds. mobility on commonly encountered rolling environments is a key aspect of function. high variation in capacity among wheelchair users can mask changes in mobility because of wheelchair design. a repeated measures protocol in which the participants use one type of wheelchair and then another minimises the impact of individual variation. objectives: the aspects of wheelchair mobility test (awmt) was designed to be used in repeated measures studies in low-resource areas. it measures the impact of different wheelchair types on physical performance in commonly encountered rolling environments and provides an opportunity for qualitative and quantitative participant response. this study sought to confirm the ability of the awmt to discern differences in mobility because of wheelchair design. method: participants were wheelchair users at a boarding school for students with disabilities in a low-resource area. each participant completed timed tests on measured tracks on rough and smooth surfaces, in tight spaces and over curbs. four types of wheelchairs designed for use in low-resource areas were included. results: the protocol demonstrated the ability to discriminate changes in mobility of individuals because of wheelchair type. conclusion: comparative effectiveness studies with this protocol can enable beneficial change. this is illustrated by design alterations by wheelchair manufacturers in response to results. introduction research directly comparing different health-related interventions is essential to confirm that the goals of those interventions are achieved (horn & gassaway 2007; jutai et al. 2005). comparative effectiveness research for wheelchairs intended for use in resource-limited environments is needed (borg & khasnabis 2008; who 2011). the ability to move over different surfaces encountered in daily routine is a key aspect of wheelchair effectiveness (kirby 2011; mortenson, miller & auger 2008). wheelchair users and family members have often placed highest priority on mobility and the psychosocial benefits that result from it (hosseini et al. 2012). in fact, wheelchairs are provided specifically to those people who are unable to get around in their daily environment effectively by walking. therefore, comparative effectiveness studies on the mobility facilitated by different wheelchair types on commonly encountered rolling environments are needed (american medical association 1994; borg & khasnabis 2008; matter et al. 2016). wheelchairs intended for use in low-resource areas should enable good mobility on commonly encountered rolling surfaces. wheelchairs designed for use in the united states and europe may not provide adequate mobility because of the differences in the environments of daily life. in developed areas, populations spend more time indoors on smooth surfaces than they typically do in low-resource areas; therefore there is more need for rough terrain wheelchairs for low-resource areas (winter et al. 2010). ramps and wheelchair friendly public transportation are also more likely to be available in wealthier regions (borg, lindström & larsson 2011b). in contrast, wheelchair users in low-resource areas often spend considerable time outdoors where they and their wheelchairs encounter rough terrain, and where public transportation is difficult (blanford et al. 2012; borg et al. 2011b; monk & wee 2008; sietchiping, permezel & ngomsi 2012). in low-resource areas, living spaces such as houses and schools may be small and sometimes crowded; therefore, the ability to move a wheelchair through tight spaces is also crucial; building codes may not require ramps and other modifications that make wheelchair access easy; thus, coping with curbs is necessary (borg et al. 2011b; matter et al. 2016). the environment is so different at some locations that donated wheelchairs from more developed settings have been found to be nearly useless (mukherjee & samanta 2005). wheelchair centre of gravity, caster and wheel sizes, wheelbase length and other design characteristics may impact the ease of movement in different rolling environments quite differently (cowan et al. 2009). characteristics of casters and tires including the quality, texture, firmness and condition of the bearings and wheels also impact ease of rolling (frank & abel 1989; kauzlarich & thacker 1985; vanderwiel et al. 2016). organisations manufacturing and providing wheelchairs for low-resource areas face tight financial constraints that are addressed by different organisations in different ways (usaid/who 2012). often, wheelchair availability in low-resource areas may limit the ability of therapists to ideally fit wheelchair users. for example, active users may be put into a range of more or less ideally appropriate wheelchairs depending on what is available (gartz et al. 2016). the type of wheelchair provided often simply depends on which type is available when one is needed. studies carried out in the environments where the wheelchairs are used are essential to provide feedback to maximise effective use of limited funds (jutai et al. 2005). one of the challenges of comparative studies is the great variation in capability among wheelchair users (hoenig, giacobbi & levy 2007; may 1997; mortenson et al. 2008). variations among wheelchair users in skill and capability level can mask the negative impact of a poor wheelchair design. unless a protocol is used in a repeated measures study design in which the user completes a test in one wheelchair and then another, the impact of wheelchair design on mobility may not be apparent (hoenig et al. 2015; mortenson et al. 2008; rispin & wee 2015). this type of repeated measures study protocol minimises the effect of individual variation because a participant is compared only with himself or herself (coutinho, neto & beraldo 2014; neto, coutinho & beraldo 2014; walpole et al. 2006). even in a repeated measures protocol, a strongly skilled wheelchair user may be able to roll in most environments in almost any wheelchair; therefore, the ability to discern the effect of different wheelchair designs requires high discriminatory validity. study design impacts discriminatory validity in several ways. objectively measured data such as velocity may be considerably lower in one chair type than another when rolling on rough ground, but a study design which only uses a limited categorical response or completion score would indicate the task was completed successfully in both chairs. objectively measured physical performance data such as velocity and heart rate also minimise variation because of raters’ perceptive frames (may 1997). in addition, unlike categorical data, objectively measured data is often suitable for powerful parametric statistical tools such as analysis of variance (anova) (may 1997; walpole et al. 2006). the length of a timed test impacts discriminatory power with longer tests amplifying differences in velocity (kosak & smith 2005). longer timed roll tests are also more likely than shorter tests to discern differences. a change in the ease of rolling which impacts energy cost is more evident as participants move into aerobic exercise about 2 min into a test (berne et al. 2004; kosak & smith 2005). direct questionnaire feedback from wheelchair users provides insights on capability and mobility not available any other way (neale & strang 2015; reeve et al. 2013). questionnaire design can enhance or reduce the ability to discriminate differences (may 1997; reips & funke 2008). visual analogue scale (vas) question format produces continuous data which has been considered suitable for parametric statistical analysis (philip 1990; walpole et al. 2006). qualitative comments directly provide the wheelchair user’s understanding of the reasons for ease or difficulty (neale & strang 2015). discriminatory validity is enhanced by a mixed methods protocol which includes qualitative data, allowing wider scope of understanding and triangulation (fielding 2012). the quebec user evaluation of satisfaction with assistive technology obtains user feedback on their satisfaction with any assistive device (demers et al. 2002). it can and has been used in comparative effectiveness studies assessing user satisfaction with assistive technology (deems-dluhy et al. 2016; sadiya, pattnaik & mohanty 2016). however, it is not a physical performance measure and does not supply information specific to wheelchair mobility. questionnaires aimed at assessing individual capability and physical performance include functional independence measure and the barthel index (kumar et al. 2013; ottenbacher et al. 1996; wade & collin 1988). wheelchair-specific questionnaires include the wheelchair skills test questionnaire and functioning every day in a wheelchair questionnaire (kirby et al. 2004; mills et al. 2002). directly measured or observed physical performance measures intended to assess a wheelchair user’s capabilities are often called skills tests (kirby 2011; oyster et al. 2012). they include the wheelchair skills test, the wheelchair propulsion test, the wheelchair users functional assessment, the wheelchair circuit, the obstacle course assessment of wheelchair user performance and the wheelchair physical functional performance (askari et al. 2013; cress et al. 2002; fliess-douer et al. 2010; kirby et al. 2004; mortenson, miller & miller-pogar 2007; routhier et al. 2004; rushton et al. 2013; stanley et al. 2003). the above measures are not primarily designed for use in repeated measures studies assessing differences in mobility because of wheelchair design. in spite of its focus on the evaluation of individual wheelchair user’s skills and capacity, the wheelchair skills test has been used in studies comparing design changes in tilt in space and anti-tip devices. in the tilt in space study, the quebec user evaluation of satisfaction with assistive technology and a vas question regarding perceived exertion were also completed (kirby et al. 2008a, 2008b). objective quantitative data on mobility have also been obtained in laboratory settings (askari et al. 2013; coutinho et al. 2014; cowan et al. 2008; cress et al. 2002; neto et al. 2014; yang et al. 2006). however, a laboratory setting does not perfectly mimic the conditions of daily use. it is important that effectiveness studies are also done in the environment where wheelchairs are used (jutai et al. 2005; toro et al. 2012; who 2015). the aspects of wheelchair mobility protocol (awmp) was developed to be used in low-resource areas in a repeated measures format to discern differences in mobility because of wheelchair design (rispin & wee 2015). there is a tension between every rolling environment that may be of interest, and keeping a protocol short, simple and usable. because smooth and rough surfaces, tight spaces and low curbs are commonly encountered, and because each interacts somewhat differently with the wheelchair design, these surfaces were included in the awmp (rispin & wee 2015). face validity is the logical subjective expectation that a protocol will test its target construct (jerosch-herold 2005). to that end, mobility was directly measured using timed roll tests similar to the long validated timed walk test protocols (enright 2003; rispin & wee 2015). methods were selected with the intention that quantitative data would be continuous and suitable for powerful parametric statistical tools such as anova (rispin & wee 2015; walpole et al. 2006). performance tests were of sufficient duration to include the transition to aerobic respiration (neto et al. 2014; rispin & wee 2015). visual analogue scale responses and comments were solicited from participants, and exercise and resting heart rate were monitored using research grade heart rate monitors (crapo et al. 2002; rispin & wee 2015). the format of the participant response questions in awmp was based on that used in the lower limb function questionnaire. this format was selected because vas format is very likely to provide data suitable for parametric statistical analysis tools, and because each question includes an opportunity to write a comment providing qualitative explanatory information (funk et al. 2016). measurements of heart rate or oxygen consumption provide continuous objective data on the energy cost of movement (coutinho et al. 2014; neto et al. 2014). in earlier iterations of the awmp, the physiological cost index (pci) was calculated rather than directly comparing exercise heart rate (rispin & wee 2015). slowing down when encountering difficulty or awkwardness is the strategy that has enabled timed walk tests to be validated by measuring difficulty in ambulation (holland et al. 2014). however, slowing down is not the only response to a greater difficulty in moving. continuing at the same pace and spending, more energy per unit time is the strategy of dealing with difficulty that underlies monitoring heart rate and oxygen consumption per unit time as a measure of difficulty of movement (conger & bassett 2011). pci calculation includes velocity, and thus includes both strategies of dealing with difficulty; however, this makes it difficult to tell which strategy is most commonly used (ijzerman & nene 2002). circadian rhythm, the cost of digestion, body temperature and other factors have a larger proportional impact on non-exercise heart rate than on exercise heart rate. because pci calculation includes non-exercise heart rate, these factors would likely impact pci more than they would do the direct measurement of exercise heart rate (berne et al. 2004). the objective of this study was to obtain data that sheds light on the mobility provided by wheelchairs designed for low-resource areas as they roll on surfaces and in situations commonly encountered there. our hypothesis was that an updated version of the awmp which used exercise heart rate instead of pci would have the discriminatory validity to provide comparative effectiveness data on four types of wheelchairs commonly provided to wheelchair users with strong upper bodies at our study site. specifically, we hypothesised that anova results for velocity, heart rate and participant response vas scores would indicate significant differences between wheelchair types. participant comments would shed light on the perceived reasons for ease or difficulty. meaningful discriminatory validity would be confirmed by results which would enable wheelchair manufacturers to make responsive changes. methods study site this study was conducted in partnership with an organisation that provides rehabilitation to students at a boarding school for students with disabilities in kenya. the location included a primary and secondary school, and participants were drawn from both. because students with disabilities in kenya are often not able to attend local schools, some had begun school at an older age. this resulted in a wide age range in study participants. wheelchair users at the site regularly traverse paved and unpaved areas, curbs and tight spaces. participants a convenience sample of participants was recruited from wheelchair using students. local therapists identified students of appropriate size and disability to use the study wheelchairs safely, and who had the ability to self-propel a manual wheelchair without stress on unpaved surfaces. the second criterion was added with the presupposition that strong wheelchair users would provide more complete data sets for all tracks, and would therefore increase the statistical power of anova analysis across tracks and wheelchairs. participation was voluntary, and participants could withdraw at any time or choose not to complete any task. wheelchairs tested the study utilised four wheelchair types intended for provision in low-resource areas. all four types were commonly provided to wheelchair users with strong upper bodies at our study site, and were available at our study site. they included the free wheelchair mission generation 2 (fg2) manufactured by free wheelchair mission (free wheelchair mission), the hope haven kidchair (hkc) manufactured by hope haven (hope haven international), the whirlwind roughrider (wrr) manufactured by whirlwind (whirlwind) and the motivation rough terrain (mrt) wheelchair manufactured by motivation (motivation, 2011). additional information on characteristics of the wheelchair types such as dimensions, weight and so on is available through the manufactures whose websites are cited above. because awmp is intended to provide real-world comparative effectiveness data, the wheelchairs were set up in the configuration most commonly used for active wheelchair users at our study site. photos of the four wheelchairs in the configurations used in this study are given in figure 1. the width of the seat of the wheelchairs used in this study was the option closest to 33 cm for all chair types. this was chosen because this width was suitable to a large group of wheelchair users at our study site. figure 1: the wheelchairs utilised, shown as they were commonly configured at our location for active users and the way they were configured for this study. this study was part of a long-term study focused on fg2 and hkc wheelchairs. broader comparison with other wheelchair options for active users at our study site was desired; therefore, mrt and wrr were also included. however, there was no sufficient time to compare all four wheelchairs on all tracks; therefore, only the curb track, the most challenging, was chosen for use with all four wheelchairs. testing protocol on arriving at the study location, researchers looked for areas appropriate to set up measured tracks incorporating rough, smooth, tight spaces and curbs. for each of the four rolling environments, a looped track was set up and measured using a survey wheel. rough and smooth tracks were to be of 6 min duration similar to the 6 min timed walk test. curb and tight tracks were of 3 min duration because of greater difficulty of the curb track and repeated turns on the tight track. curb and rough rolling environments were included partly to prevent a ceiling effect. hkc and fg2 wheelchairs were used on the tight, rough and smooth surface tracks. all four wheelchair types were used on the curb track to provide a broader comparison for wheelchair function on that track. each participant was asked to attempt to complete each track in each wheelchair utilised on that track. a low discrepancy shifting pattern of wheelchairs and rolling environments was used to avoid skewing of results by the order of testing. if the study wheelchair was not their own wheelchair type, participants were given a few minutes to accommodate to the wheelchair before testing began. to avoid fatigue, data collection for different wheelchairs was done on different days, and participants were pushed between track locations. distance travelled was measured by counting the number of times the loop was completed, and using a survey wheel to measure the length of the final incomplete loop. velocity was calculated by dividing distance travelled by test time. after each track, participants were asked to rate the ease or difficulty of movement on a 10-cm vas and to provide a qualitative explanatory comment (see figure 2 for question format). participants wore polarpro 800 heart rate monitors and watches. non-exercise heart rate was taken while the participants sat quietly for 5 min before testing began. each subsequent test was started only when a participant’s heart rate had returned to their initial non-exercise heart rate. heart rate monitor data were downloaded to a computer, the time period after the first 2 min of each test was selected and the mean heart rate for that time period was calculated. figure 2: a participant feedback question showing the format used for these questions. analysis minitab statistical analysis program was utilised for the anderson–darling test for normality, and repeated measures anova with tukey’s simultaneous comparison of means. if a proportion of participants withdrew from a test on a particular track, a chi-squared analysis of proportions test was calculated. qualitative comments were coded into categories using an open-ended conventional content analysis method in which the content of the comments guided the formation of categories. the number of comments for each category was counted across wheelchair types and tests. ethical consideration the study protocol was approved by the authors’ universities and by the partner organisations. participants over 18 years of age provided informed written consent. those under 18 years of age provided informed written assent and their guardians provided informed written consent. results track characteristics the rough track was 31.2 m in length on an earth and gravel road around a cul-de-sac with a central circular garden. the smooth track was 60.2 m in length on the paved deck around the school’s outdoor swimming pool. outside the dining hall, on a cement surface, there was a square area 1.5 m wide, raised 9 cm above the rest of the surface; the curb track was 10 m in length and traversed the raised area twice. for the tight track, four straight-backed school chairs were set in a row 1 m apart on an indoor cement floor. the 12 m track was a figure eight pattern around the middle two of the four chairs. the length of each track was measured using a survey wheel. participants in total, 30 participants joined the study (age 13.5, sd 3.5, gender 17 male and 13 female). see table 1 for numbers of participants whose long term wheelchair was one of the types of wheelchairs included in this study, and for diagnoses as provided by our partner organisation. table 1a: number of participants who were long-term users of a type of wheelchair included in this study, and diagnoses of participants as provided by our partner organisation. table 1b: number of participants who were long-term users of a type of wheelchair included in this study, and diagnoses of participants as provided by our partner organisation. completion rates all 30 participants completed the two-way comparison on rough, smooth and tight tracks in hkc and fg2 wheelchairs. on the rough track, heart rate and velocity data for two participants were lost when a researcher’s computer crashed. all participants attempted the curb track in all four wheelchair types; however, 18 participants chose not to complete it in hkc, 10 in fg2, 6 in mrt and 5 in wrr. explanatory comments for those who did not complete indicated difficulty and fatigue. results for two-way comparison on rough, smooth and tight tracks, participants used both the hkc and fg2 wheelchairs. anderson–darling analysis indicated that distributions of data for velocity, mean exercise heart rate, and vas participant response scores were statistically normal and suitable for parametric statistical analysis using anova. repeated measures anova indicated significant differences in participant velocity (f(1,29) = 61.2, p < 0.001), and vas scores (f(1,29) = 43.1, p < 0.001). interaction plots for the anova wheelchair factor showing mean values are given in figure 3. comparison of means indicated that the differences were driven by participants’ low velocity and low ratings for hkc (figure 3). although there were significant differences in exercise heart rate between tracks, there were no significant difference rates between wheelchairs. of the participants, 40% provided qualitative comments. comment topics as coded and counted across wheelchairs and tests are provided in table 2. figure 3: the analysis of variance interaction plots for the comparison between free wheelchair mission generation 2 and hope haven kidchair wheelchairs on rough, smooth and tight spaces rolling environments. table 2: coded and counted comments from the comparison between free wheelchair mission generation 2 and hope haven kidchair wheelchairs on rough, smooth and tight rolling environments (n = 30). results for four-way comparison on the curb track, participants used all four wheelchair types. chi-squared analysis indicated the proportion of participants able to complete the curb test did not differ between wrr, mrt and fg2 chairs, but was significantly lower for hkc chairs. repeated measures anova on data from the 12 participants capable of completing the test in all four wheelchair types indicated significant differences between wheelchairs for velocity (f(3,26) = 27.1, p < 0.001), vas scores (f(3,26) = 5.80, p = 0.003) and exercise heart rate (f(3,26) = 63.26, p = 0.037). main effects plots showing mean values are given in figure 4. for all participants who completed a curb test in any of the wheelchairs, comments were coded and counted. of the participants, 59% provided comments. comment topics across wheelchairs are given in table 3. figure 4: the analysis of variance main effects plots the comparison between free wheelchair mission generation 2, hope haven kidchair, whirlwind roughrider and mrt wheelchairs for the 12 participants able to complete the curb track in all four wheelchair types. table 3: coded and counted comments from all runs in any wheelchair on the curb rolling environment. discussion discriminatory validity of the awmp was confirmed through anova analysis which discerned significant differences between wheelchair types for velocity and participant response scores. the numbers and types of comment topics explained anova results and added other qualitative information. results from this study led to responsive design change confirming the value of the awmp in providing comparative effectiveness data. we had decided to use mean exercise heart rate in analysis instead of pci for two reasons. we wanted to differentiate between two strategies of dealing with increased physiological difficulty, and reduce the effect of other factors that impact basal metabolic rate. although mean exercise heart rate differentiated between rolling environments, we could see clearly that exercise heart rate, a measure of energy cost per minute, did not significantly differ between wheelchair types on the rough, smooth and tight tracks. if a wheelchair was more difficult to use, participants seemed to simply slow down. the only test for which anova indicated a significant difference in exercise heart rate was the curb track for the 12 strong and skilled participants able to complete this test in all four chair types. this significant difference was because of higher mean heart rate in the wrr chair than in the other types. however, the significantly higher heart rate in wrr did not seem to impact perceived difficulty much, because visual analogue scores for wrr were not significantly different from those of the mrt wheelchair (figure 2), and score patterns paralleled velocity more closely than heart rate. this seems to indicate that participants’ perception of difficulty was more closely related to velocity than heart rate. it would seem that by dropping the use of heart rate monitors from the protocol, we could simplify the awmp considerably without much loss of discriminatory validity. qualitative results open-ended qualitative conventional analysis methods resulted in the ability to elucidate explanatory topic categories. the relatively young age of the participants, with a mean age of 13 years, may have been a factor in the fact that fewer than 50% of the completed questions included explanatory comments. there was also no attempt to require that a comment be provided. in future studies, there could be more encouragement to provide explanatory comments. that said, the comments which were provided were helpful in understanding factors behind objective and subjective quantitative data. on the curb track, nine comments regarding the hkc indicated the footplate support framework hit the ground on descent from a curb unless the user was in a wheelie position. the slower velocities and lower completion rates likely reflect the greater difficulty of getting into a wheelie position before descending, a step unnecessary in the other wheelchair types – a finding which encouraged the development of the bee line wheelchairs. qualitative comments also resulted in responsive change in design by free wheelchair mission. participants who commented seemed to mention anything about the wheelchair that bothered them as they moved through the different rolling environments. this may have been something that did not slow them down. although participants’ velocity was higher in fg2 than in hkc, many comments mentioned about the difficulty with the push rims on the fg2 chairs. when counted across all tracks, 12 comments mentioned discomfort from the bars which held push rims to wheel, and six comments mentioned push rims that caused forearms to brush the tire. free wheelchair mission has responded with push rim modifications intended to address both issues. for tests focused on the assessment of an individual’s mobility, four rolling environments may not be needed. because of the very high individual variation in capability, a shorter test in one rolling environment such as the wheelchair propulsion test differentiates between individuals (askari et al. 2013). however, the goal of the awmp is to assess the comparative effectiveness of mobility facilitated by different wheelchair designs. for that purpose, the four rolling environments were needed because design does not interact with each environment in the same way and there are multiple commonly encountered rolling environments. although the focus of this article is on the discriminatory ability of the awmp rather than a direct comparison of the wheelchairs, a brief discussion of the factors which may be behind the evident differences may be of interest. because the height of an obstacle that stops a wheel rolling is proportional to wheel diameter, and rolling resistance is inversely proportional to wheel size, one might have expected that the mrt chair with the largest wheels and caster would have done better than the other wheelchairs (mason et al. 2012). however, centre of gravity relative to the axle position is also known to have an impact with a centre of gravity closer to the axle resulting in a lower rolling resistance partly because it offloads the smaller front caster (lemaire et al. 1991). hkc has an anterior centre of gravity in comparison with the other three wheelchairs. it is interesting that results for velocity and participant response seemed to reflect this difference in centre of gravity more than the difference in wheel or caster size. however, hkc is the only chair of the four which includes options for head, trunk and hip supports; therefore, although it has often been distributed to active users at our study site, this may not be its ideal population. that said, the increase in rolling resistance is also present for pushers of wheelchairs, a factor that is of greater importance in low-resource areas with very little access to power wheelchairs (sasaki & rispin 2016). the repeated measures protocol was key to enabling discriminatory validity in spite of wide variation among participants. the impact of differences because of disability characteristics, strength, gender, general outlook on life and age are minimised in a within subjects repeated measures protocol because each participant is only compared with themselves. for example, on the rough surface track, velocity among participants varied from 20 m/min to 70 m/min. the fastest participants travelled faster than the slowest participants in all chairs. however, repeated measures analysis could discern that there was a consistent pattern in which most participants travelled more slowly when in one wheelchair type. data collection protocols that produced continuous statistically normal data was also important to discriminatory validity because it enabled anova comparisons across wheelchairs and rolling environments. for example, anova analysis enabled the communication of clear objective results showing that velocity and vas responses were lower for hkc than the other wheelchair types (figure 2). this was a key factor in hope haven’s exploration of other wheelchair design options. this study was completed in 2014. hope haven deployed the three wheeled ‘bee-line’ wheelchairs in 2016 with the intention of facilitating better mobility in all commonly encountered rolling environments. limitations and future work results of this study are specific to the conditions at our study site. although it has much in common with other sites in low-resource areas, it is of course unique as are all locations. tracks would not be identical at other study sites, and data from other study sites could not be directly compared with this study. for example, a rough ground track on an unpaved road at one location would not be exactly like a rough ground track at a different location. a low curb which is available and often encountered at one location might be 8 cm tall, whereas a curb at another location might be 10 cm tall. in studies carried out in north america, standardised rough surfaces have been developed and used (sasaki & rispin 2016). however, these standardised rough surfaces are large and not easily transported to field locations in low-resource areas. in addition, they would not perfectly model conditions encountered by wheelchair users. with the awmp, study design, each participant is compared with themselves in their community location. awmp could be used in many locations as long as there was no intention of considering the data exactly equivalent to data collected at another location. this flexibility is necessary in real-world research and is of key importance in studies carried out in low-resource areas. the use of letter grades as anchors for the vas tends to standardise subject response and provide an understandable value to participants, researchers and manufactures (funk et al. 2016; rispin et al. 2017). however, the letter grades would need to be modified by whatever grading scale is in use in the culture in which a study is carried out. study wheelchairs were in the configuration most often utilised at our study site for those who can self-propel strongly. a broader comparison would have been provided if all four wheelchair types could have been included on all tracks, but this was not possible because of time constraints. both the mrt and wrr chairs have the ability to be adjusted into less stable configurations with the centre of gravity closer to the rear axle, which, for skilled users, is thought to provide enhanced mobility (motivation 2011; whirlwind). most wheelchairs at our study location had not been changed into this less stable but more energy efficient configuration. therefore, we set the study wrr and mrt wheelchairs to a more stable configuration. configurations of the same wheelchairs may routinely be set up differently at other study locations. however, additional studies at other locations are needed. results are specific to our study population of school age participants able to self-propel on rough surfaces. this population is not typical of the global population of wheelchair users, especially because obesity and age-related disability is becoming more prevalent in low-resource areas (who 2015). validation is needed for the awmp for other populations and cultures. however, it does seem likely that a wheelchair which is challenging for strong adolescent users will be even more challenging for older and more disabled users. wheelchair users were selected based on their identification by local therapists as having size and disability characteristics appropriate for the study wheelchairs. however, wheelchairs were not finely adjusted to each participant. wheelchairs were of course not identical, and would have fit different participants somewhat differently. for each individual, this would impact results because appropriate seating is known to impact mobility (borg, larsson & östergren 2011a). in this study, the sample size of 30 participants and the repeated measures format would have reduced the impact of the individual variation, unless the seating system of a wheelchair type was less suitable for most participants. in that case, the results were still likely of interest because the population of users with the types of wheelchairs in our study at our study location had the characteristics of our participant population. results can be generalised only to the extent that other study sites may resemble our study site. wheelchair or user centre of gravity was not measured for each wheelchair and would have shifted somewhat for users of differing individual morphologies and resultant personal centres of gravity. however, body structure of individuals that resulted in a shifted centre of gravity would have remained the same for that individual in all chairs, so the within subjects protocol should have minimised the impact on comparative results. all wheelchairs except hkc had inflatable tires. before each data collection session, tire pressure was informally checked by pinching the tire, but was not formally checked using a tire gauge. a tire gradually losing air may not have been noticed and could have impacted results. in future studies, it would be wise to formally check tire pressure before each run. the weather and other differences between days could have impacted our data. we chose to do each chair type on a different day because we felt that the fatigue which would result from attempting to do multiple wheelchairs on one day would have had a greater impact than any difference because of variations between days. accommodation to unfamiliar wheelchair types may also have impacted our data. participants utilised multiple wheelchair types that included wheelchair types they had never used. a short accommodation period was included in the protocol; however, accommodation may take longer than a few minutes. if accommodation had affected results, fg2 results in this study could have been negatively impacted. a portion of participants were long-term users of each of the types of study wheelchairs. more participants were hkc users than any other chair, and yet all other study chairs outperformed the hkc chair. fg2 had the fewest long-term users. future work the use of research grade heart rate monitor and the ability to download data to a computer to calculate mean exercise heart rate could make the awmp impractical at many locations. because heart rate rarely differentiated between wheelchair types, in future studies, the use of exercise heart rate could be eliminated to make awmp more broadly useful in low-resource areas. modifications to the duration of the timed tests are also planned. longer tests enable more sampling time for velocity; however, the added time can tire participants and challenge schedules (kosak & smith 2005). studies indicate that for participants in self-propelling wheelchairs, the aerobic threshold is often considered to be reached 2 min from the initiation of exercise (coutinho et al. 2014; neto et al. 2014; rispin & wee 2015). often, the impact of difficulty in propulsion may not be fully felt until a participant has passed this aerobic threshold. four-minute tests would still include 2 min after this typical aerobic threshold, and should enable sufficient length of test for high discriminatory ability. the use of 4 min timed tracks on all rolling environments would also simplify data collection and analysis. this would allow a standard time across all tests, and would reduce the total time constraint on participants and researchers. further testing is planned to confirm the benefit of the above changes. although face validity for this protocol is high, formal reliability testing and validity testing had not been performed at the time of this study. test retest reliability and construct validity testing has now been carried out for the updated awmp and results are presented in a companion study in this journal. conclusion the good discriminatory validity of the awmp enables its use in comparative effectiveness studies that can provide much needed feedback enabling wheelchair manufacturers to optimise wheelchair design. organisations that design and manufacture wheelchairs intended for use in low-resource settings are almost always not-for-profit and have a strong commitment to meeting the overwhelming global need for wheelchairs. designs that hinder users’ abilities to roll forward on commonly encountered rolling environments limit the positive impact of wheelchair provision. the awmp can be used in comparative effectiveness studies for other wheelchair types to inform beneficial design change. if awmp studies are performed with locally available wheelchairs in locations where wheelchair users live, results could enable informed choices for wheelchair provision. other stakeholders such as granting or charitable agencies providing funding could also benefit from comparative effectiveness data to inform wheelchair selection choices for different locations. acknowledgements the authors thank universities, their partner organisations and those who assisted with statistical analysis. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced the writing of this article. authors’ contributions k.l.r., associate professor at letourneau university, leads the wheels project www.letu.edu/wheels. her contributions were primary conception, study design, important intellectual content, interpretation and analysis of data, revising and redrafting and final approval. e.h., undergraduate student at letourneau university, was involved in data 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al., 2010, ‘the design, fabrication, and performance of the east african trial leveraged freedom chair’, paper presented at the 15th design for manufacturing and the lifecycle conference, 7th symposium on international design and design education, montreal, 15–18 august. yang, y.s., koontz, a.m., triolo, r.j., mercer, j.l. & boninger, m.l., 2006, ‘surface electromyography activity of trunk muscles during wheelchair propulsion’, clinical biomechanics 21(10), 1032–1041. https://doi.org/10.1016/j.clinbiomech.2006.07.006 ajod 9_2020_contents.indd http://www.ajod.org open access table of contents i original research the value of a short practical training course for newly qualified therapists working with children with cerebral palsy in south africa takondwa c. bakuwa, sonti pilusa, gillian saloojee african journal of disability | vol 9 | a610 | 21 april 2020 original research the impact of an inclusive education intervention on learning outcomes for girls with disabilities within a resource-poor setting mark carew, marcella deluca, nora groce, sammy fwaga, maria kett african journal of disability | vol 9 | a555 | 13 may 2020 original research recycling of plaster of paris servas shiyo, jozef nagels, harold g. shangali african journal of disability | vol 9 | a503 | 27 may 2020 original research development of self-help groups for caregivers of children with disabilities in kilifi, kenya: process evaluation joseph k. gona, charles newton, sally hartley, karen bunning african journal of disability | vol 9 | a650 | 22 july 2020 original research representation and methods of normalisation: narratives of disability within a south african tertiary institution taegan devar, shaida bobat, shanya reuben african journal of disability | vol 9 | a629 | 23 july 2020 original research preparedness of civil society in botswana to advance disability inclusion in programmes addressing gender-based and other forms of violence against women and girls with disabilities jill hanass-hancock, nomfundo mthethwa, malebogo molefhe, tshiamo keakabetse african journal of disability | vol 9 | a664 | 28 july 2020 original research impact of lived experiences of people with disabilities in the built environment in south africa victor mckinney, seyi l. amosun african journal of disability | vol 9 | a518 | 06 august 2020 original research the life stories and experiences of the children admitted to the institute for imbecile children from 1895 to 1913 rory du plessis african journal of disability | vol 9 | a669 | 28 august 2020 original research barriers experienced by people with disabilities participating in incomegenerating activities. a case of a sheltered workshop in bloemfontein, south africa nokuthula tinta, hester steyn, jana vermaas african journal of disability | vol 9 | a662 | 31 august 2020 83 95 103 112 121 131 144 155 165 page i of ii table of contents i opinion paper covid-19, disability and the context of healthcare triage in south africa: notes in a time of pandemic emma l. mckinney, victor mckinney, leslie swartz african journal of disability | vol 9 | a766 | 18 august 2020 review article motor skill intervention for pre-school children: a scoping review janke van der walt, nicola a. plastow, marianne unger african journal of disability | vol 9 | a747 | 10 december 2020 review article universal design for learning in inclusive education policy in south africa judith a. mckenzie, elizabeth m. dalton african journal of disability | vol 9 | a776 | 15 december 2020 original research learning support strategies for learners with neurodevelopmental disorders: perspectives of recently qualified teachers amarachi j. yoro, jean v. fourie, martyn van der merwe african journal of disability | vol 9 | a561 | 06 february 2020 original research the development of education for learners with diverse learning needs in the south african context: a bio-ecological systems analysis suegnet smit, lynn d. preston, johnnie hay african journal of disability | vol 9 | a670 | 10 february 2020 original research being differently abled: disability through the lens of hierarchy of binaries and bitso-lebe-ke seromo paul l. leshota, maximus m. sefotho african journal of disability | vol 9 | a643 | 25 february 2020 original research the promise of equal education not kept: specific learning disabilities – the invisible disability melanie a. gow, yvonne mostert, lorna dreyer african journal of disability | vol 9 | a647 | 26 february 2020 original research functional outcome of stroke inpatients according to human immunodeficiency virus status: a feasibility study tasneem hartley, marlette burger, tonya m. esterhuizen, gakeemah inglis-jassiem african journal of disability | vol 9 | a618 | 30 march 2020 original research transformative equality: court accommodations for south african citizens with severe communication disabilities robyn m. white, juan bornman, ensa johnson, karen tewson, joan van niekerk african journal of disability | vol 9 | a651 | 01 april 2020 1 10 18 26 36 45 52 62 71 vol 9 (2020) issn: 2223-9170 (print) | issn: 2226-7220 (online)african journal of disability http://www.ajod.org open access table of contents ii original research looking under the veil: challenges faced by people with disabilities in cross-border entrepreneurship keresencia matsaure, agness chindimba, felistas r. zimano, fayth ruffin african journal of disability | vol 9 | a645 | 02 september 2020 original research profile and opinion of people with disability with respect to adapted physical activity participation in ethiopia getachew k. basha, hendrik j. van heerden african journal of disability | vol 9 | a657 | 16 september 2020 original research an investigation on the status of resilience amongst adults with blindness in addis ababa tsigie g. zegeye african journal of disability | vol 9 | a628 | 10 november 2020 original research disability and functioning in primary and secondary hip osteoarthritis in benin todègnon f. assogba, didier d. niama-natta, toussaint g. kpadonou, teefany lawson, philippe mahaudens, christine detrembleur african journal of disability | vol 9 | a675 | 12 november 2020 174 184 192 200 original research illuminating the empowerment journey of caregivers of children with disabilities: understanding lessons learnt from ghana maria zuurmond, janet seeley, tom shakespeare, gifty g. nyante, sarah bernays african journal of disability | vol 9 | a705 | 27 november 2020 original research needs of families of children with intellectual and developmental disabilities in addis ababa heather m. aldersey, ansha n. ahmed, haben n. tesfamichael, natasha lotoski african journal of disability | vol 9 | a735 | 09 december 2020 original research nurses’ perceived role in healthcare transition of adolescents with intellectual disabilities grace r. malapela, gloria thupayagale-tshweneagae, olabisi f. ibitoye african journal of disability | vol 9 | a674 | 14 december 2020 original research perspectives of working-age adults with aphasia regarding social participation nadia m. souchon, esedra krüger, renata eccles, bhavani s. pillay african journal of disability | vol 9 | a713 | 15 december 2020 reviewer acknowledgement african journal of disability | vol 9 | a821 | 15 december 2020 214 223 234 239 250 page ii of ii abstract introduction interview study results proposed conceptual framework discussion conclusion acknowledgements references about the author(s) michael kyazze department of computing sciences, nelson mandela university, port elizabeth, south africa janet wesson department of computing sciences, nelson mandela university, port elizabeth, south africa kevin naudé department of computing sciences, nelson mandela university, port elizabeth, south africa citation kyazze, m., wesson, j. & naudé, k., 2019, ‘a conceptual framework for designing ambient assisted living services for individuals with disabilities in uganda and south africa’, african journal of disability 8(0), a477. https://doi.org/10.4102/ajod.v8i0.477 original research a conceptual framework for designing ambient assisted living services for individuals with disabilities in uganda and south africa michael kyazze, janet wesson and kevin naudé received: 17 dec. 2017; accepted: 28 mar. 2019; published: 26 aug. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: individuals with disabilities experience difficulty in using various everyday technologies such as computers and smartphones. objectives: to propose a conceptual framework that will lead to the development of practical and user friendly assistive technology. method: a literature review of challenges faced by individuals with physical disabilities was carried out. interviews with adults with physical disabilities in kampala, uganda, and port elizabeth, south africa, identified three main challenges with regard to using technology: using a mobile phone, controlling an electronic environment and using a computer. results: the challenges identified can be solved by taking into consideration the needs of individuals with disabilities. however, the design of new technologies and interaction techniques, such as natural hand gestures and voice, as input mechanisms has able-bodied individuals in mind. individuals with disabilities are considered as an afterthought. the main reason for this is that individuals with a disability are a minority and hence it may not make economic sense for technology innovators to cater for their unique needs. a lack of practical guidelines on how to design for individuals with disabilities is another reason why designing for individuals with disabilities is often an afterthought. conclusion: this article proposes a conceptual framework that can be used by researchers and technology designers in order to design products that could cater for the unique needs of individuals with disabilities. the article also emphasises the importance of exploring alternative interaction techniques, as they could enable individuals with disabilities to fully utilise technologies such as smart phones, computers and smart home electronics. keywords: disability; requirements identification; ambient assisted living; smart home; quadriplegia. introduction there are over 650 million estimated people with disabilities worldwide (world health organization [who] & world bank 2011). south africa has an estimated disability prevalence rate of 7.5%, excluding psychosocial and cognitive disabilities. this implies that over 2.8 million south africans face difficulties related to hearing, vision, communication, walking, climbing stairs, remembering and self-care (statistics south africa 2011). nine per cent of the ugandan population are estimated to have some form of disability (uganda bureau of statistics [ubos] and international classification of functioning [icf] 2011), which impacts their daily lives. the world health organization (who) and world bank state that the definition of disability is complex, dynamic, multidimensional and contested (who & world bank 2011). disability is defined as an umbrella term for impairments, activity limitations and participation restrictions, which limit the interaction between an individual and the individual’s contextual factors (environmental and personal factors) (ustun 2001). physical disability refers to loss or lack of limbs and damage to muscles, nerves, skin or bones that lead to difficulties moving about and in performing activities of daily living (such as dressing, eating, cleaning, etc.) (dpsa 2001). the nature of physical disabilities includes skeletal disability, such as joint movement limitations, small limbs, missing limbs or abnormal trunk size, and neuromuscular disability, which is caused by ailments that affect muscular control in part or most of the body. personal care and mobility challenges are experienced every day by individuals with disabilities, while challenges in using technology may be experienced with different frequencies. physical disabilities may be caused by a number of factors, such as accidents, disease, congenital disorder and spinal cord injury. an alternative for identifying challenges from the literature is by using the international classification of functioning, disability and health (icf). the icf is a framework for describing and organising information on functioning and disability. the icf helps to describe what individuals with disabilities can do in a standard environment (their level of capacity), as well as what they actually do in their usual environment (their level of performance) (who 2002). figure 1 illustrates the icf. environmental factors represent a physical, social and attitudinal environment in which people live and conduct their lives. figure 1: the international classification of functioning, disability and health framework. the icf has been used as a basis for the design of a framework for physiotherapy management (harvey 2007). the icf may be used to gain a better understanding of how a particular disability or health condition affects individuals, for example considering quadriplegia (langtree 2010). an associated impairment is limited hand use. limited hand use directly impacts the ability to perform activities such as personal care and mobility. this in turn has implications for participation, such as working, studying and engaging in family life. impairments, activity limitations and participation restrictions are all affected by environmental and personal factors, such as the availability of support aids, support from family and source of livelihood for the individual with a disability. the above discussion shows that icf can help in the identification of challenges faced by individuals with disabilities. one way of overcoming the challenges faced by individuals with disabilities is by employing personal assistants. however, the cost of employing a personal assistant on a 24 h basis is beyond the financial reach of most people. south africa provides a care dependency grant to primary care givers (personal assistants) of children with disabilities, who require permanent care but do not reside in state-run institutions. in 2011, nearly 111 000 children received the grant, which was r1200 per month ($86) (dwcpd and unicef 2012; western cape government 2012). unlike south africa, which provides a monthly grant to individuals with disability, uganda does not currently provide financial assistance to cover costs associated with daily living (abimanyi-ochom & mannan 2014). however, uganda piloted a social empowerment programme between 2011 and 2015 that provided 25 000 uganda shillings per month ($6.50) to vulnerable members of society, such as individuals with disabilities and the elderly (brook, jones & merttens 2012). such amounts may not be enough to cater for basic needs, such as food and shelter. assisted living may be defined as a system of housing and care that is designed for the elderly, or individuals with disabilities, and offers various levels and combinations of services, care and privacy (carpenter et al. 2006). assisted living may be enhanced by various technologies, such as ambient intelligence. ambient intelligence may be defined as the presence of a digital environment that is sensitive, adaptive and responsive to the presence of people (cook, augusto & jakkula 2009). ambient assisted living (aal) is the use of ambient intelligence to extend the time which the elderly and individuals with disabilities can live independently in their preferred environment (aal-europe 2013b; memon et al. 2014). some of the application areas of ambient intelligence include education, emergency services, transportation, hospitals, health monitoring and assistance, work places and smart homes (cook et al. 2009). one of the application areas of aal is a smart home environment. a smart home environment is one that integrates diverse, context-aware, automated technology and services with the aim of unobtrusively enhancing the lives of its inhabitants (alam, reaz & ali 2012). the application of aal technology to provide assistance to individuals with diminished independence is a growing area of research. in order to guide solution developers in creating smart home environments, research projects were undertaken to better understand the needs of the intended users. the universaal project was one such project, which was a european research project (2010–2014), with the goal of building consensus among the aal community, and consolidating their efforts to produce technically feasible and economically affordable standardised aal systems (tazari, furfari & valero 2012). the universaal project provides a suitable technical context where solutions may be developed for individuals with disabilities. the universaal platform, which consists of runtime support, development support and community support, and a reference architecture were the main deliverables of the project (universaal 2010). the main components of the universaal project are the following: aal services: these are software artefacts that address a specific need in an aal space (e.g. home, car and hospital). network artefacts: these are gadgets that implement or contribute to the implementation of aal services (e.g. sensors). aal space: an environment that provides aal services with the help of embedded networked artefacts (e.g. home, car and hospital). aal reference architecture: this identifies the basic building blocks necessary for constructing an aal space. aal platforms: software that implements the aal reference architecture in order to provide for resource sharing and allow users to experience an integrated world based on natural communication. the aal reference architecture identifies the basic building blocks necessary for constructing an aal space, such as home, supermarkets or hospitals (see figure 2). the aal space provides aal services with the help of embedded networked artefacts. the cooperation between networked artefacts distributed in an aal space is facilitated by an aal platform. the reference architecture can be used as a foundation for designing aal solutions for disabled individuals. ambient assisted living may enable disabled individuals to be less dependent on personal assistants. ambient assisted living innovations can be made up of hardware and software components. the term ‘aal services’, as used in this article, specifically refers to aal software. the involvement of users in solution design is essential in ensuring the success of that solution. the next section discusses the interview studies carried out with individuals with disabilities and their personal assistants in uganda and south africa. figure 2: the universaal reference architecture. interview study the study was interpretive in its philosophical approach and employed a qualitative methodology involving interviews. the purpose of the interviews was to gain a better understanding of the challenges faced by individuals with disabilities and to contextualise the findings from the literature. participants a purposive sampling method was employed in this study. this process involves selecting cases that will best enable the research question to be answered or objectives to be met. that is, the sample size is sufficient when additional interviews do not result in identification of new concepts, an end point called data saturation. to determine when data saturation occurs, analysis ideally occurs concurrently with data collection in an iterative cycle. this allows the researcher to document the emergence of new themes and also to identify perspectives that may otherwise be overlooked. eighteen individuals with disabilities and 12 personal assistants were interviewed. the assistants were all close relatives. participation in the interviews was restricted to individuals with physical disabilities. the interviews were conducted in two different african urban cities, namely kampala, uganda, and port elizabeth, south africa. the ugandan participants were recruited with the help of a community social worker, while the south african participants were recruited through a disability support centre at the nelson mandela university. a scientific classification of physical disabilities is essential for studying the challenges that individuals with disabilities experience (table 1). the classification is used to describe the participants’ level of disability. table 1: spinal cord injuries. the spinal cord injuries described in table 1 require different levels of care and support aids. individuals with disabilities who have cervical (c) injuries between c2 and c4 require the most care, while individuals who have thoracic (t) or lumbar (l) injuries require less care. individuals with c-level injuries may benefit more from assistive technology solutions as compared to individuals with t and l injuries, because of the extent of their need for assistance. data collection and analysis four interview questions for individuals with disabilities were formulated from the findings of a literature review study on challenges faced by individuals with disabilities in their day-to-day lives. the questions were supported with probing questions in order to obtain more information from the participants in situations where they gave brief responses to the main questions. an audio recorder was used to record the interviews. the interview questions were as follows: what challenges do you deal with on a daily basis and how do you cope with them? what support aids do you normally use and how do you use them? what are some of the limitations of the support aids? how would you address some of the limitations of these support aids? the interview questions were limited to activities carried out in living room and kitchen environments. this was done so that participants did not have to share experiences that might have made them feel uncomfortable. the interview questions for personal assistants were the following: what kind of assistance do you offer to disabled individuals? how often do you provide assistance remotely and what technology do you use? what kind of assistance do you offer remotely? what other ways do you think technology can help you to provide better assistance? the interviews were carried out over a 2-month period in 2016. the interviews were recorded and transcribed, and the transcriptions were made verbatim. computer-assisted qualitative data analysis using atlas.ti version 8 was employed to organise the data and facilitate thematic coding and identification of themes. results a summary of the themes identified from the interview studies is presented here: personal care: this is concerned with how individuals take care of themselves, for example some use personal assistants and relatives. mobility: this is related to how individuals move around from one place to another, for example by using wheel chairs. social and economic well-being: this is concerned with how individuals provide for themselves, for example through government disability grants. communication: this is related to how individuals are able to communicate with others, for example by using sign language. personal care and mobility stood out in both the literature study and interviews as the main challenges facing individuals with disabilities. a detailed discussion of the interview findings is provided next. ugandan interview study findings table 2 provides a summary of the disabilities of the participants. nine individuals with disabilities and nine personal assistants were interviewed; four of the participants with a physical disability were women, while five were men. all the participants with physical disabilities lived in private homes and were cared for by their relatives. five of the participants had spinal cord-related injuries. table 2: characteristics of participants in uganda. the findings from the ugandan interview studies are described below and grouped according to themes identified. personal care: u-p2 has difficulty in bending to do things like washing clothes and picking up items from the ground. she does not have any support aids. she said that her life could be made easier if she could get a washing machine and a dishwasher. she currently relies on her teenage daughter for assistance. mobility: u-p1 is unable to climb stairs without assistance; she relies on assistance to get items that she cannot reach, for example cooking items that are on shelves. she wants a self-drive wheelchair, which she can use without assistance. u-p5 crawls since she has no wheel chair. she relies on her nephew for assistance with activities such as cooking and cleaning. u-p6 experiences difficulty in walking without assistance; he currently uses a crude wooden support. he wants a modern walking stick. up-7 cannot walk; she does not want a wheelchair or a walking stick because she was not born lame, but became paralysed because of sickness. up-8 uses a walking stick; his wife helps him with most of the household activities so that he does not have to move around unnecessarily. up-9 has no wheelchair, so he crawls to move about. he would like a battery-powered wheelchair so that he can move without assistance. social and economic well-being: u-p3 feels emotional pain and abandoned by his family because he needs continuous support. he is unable to find a meaningful employment. he was a motorcycle taxi operator before he suffered an accident. u-p4 experiences discrimination by the public; he needs a tricycle which he can use by himself without assistance. u-p7 experiences discrimination from some members of the public. the participants experienced difficulty in moving from one place to another, and emotional pain and difficulty in carrying out personal care activities. personal care and mobility were two of the challenges identified from the literature. the nine personal assistants reported that the primary assistance they provide is with mobility and personal care-related challenges. the interviewer discussed aal with the participants. the participants agreed that aal services, such as turning on or turning off lights without assistance and controlling tv sets without assistance, may be helpful to them. they emphasised that their most important needs are support aids, such as wheelchairs, walking sticks, prosthetics and battery-powered wheelchairs. these would help them to be less reliant on assistance from relatives. they attributed the lack of these essential aids to poverty. south african interview study nine disabled individuals and three personal assistants were interviewed in port elizabeth, south africa. seven of the disabled individuals were men, while two were women. six of the participants were residents of a home for the disabled, while three were university students. six of the participants had spinal cord-related injuries. table 3 provides a summary of the participants’ disabilities. table 3: characteristics of south african participant disability. the findings from the south african interview studies are described below and grouped according to themes identified. personal care: s-p9 needs assistance to get items, such as plates from shelves. she has a wheelchair but cannot self-propel. mobility: s-p1’s lower body is immobile (waist downwards). he uses a wheel chair to move around. he does not want a battery-powered wheelchair because he says that it will make him lazy. he drives himself to and from school using a specially modified car. he needs assistance in cooking; he says that while he is able to use his arms, they usually become tired because he uses them for everything. s-p5 is unable to use his left hand. he currently uses a manual wheelchair; he would like an electric wheelchair but cannot afford one. he needs assistance to get out of the wheelchair. he is also unable to cook for himself. s-p7 is able to fully use his hands; however, he is confined to a wheelchair because of polio. he uses a picker to pick up items from the ground; however, he needs assistance to get items, such as books from shelves. communication: s-p1 said that he would find it beneficial if he could use voice commands and gestures to interact with electronic devices, such as a tv. s-p2 lives in a disability care home, and he is unable to speak clearly. he uses a head-mounted device to interact with a computer. he relies on caregivers to assist him with putting on and removing the head gear. s-p3 is unable to use his phone fully as he has limited control of his hands and cannot press the buttons. he is able to interact with a computer using a mouth stick. he needs to be fed by a caregiver. s-p3 complained that he normally uses loud speakers on his phone because he cannot hold the phone to his ears. s-p4 has difficulty in using the phone and also experiences difficulty when using a computer. s-p6 is unable to use his hands fully. he says that voice commands and gestures would be very useful. he occasionally uses a tablet computer. he says that tablets are much easier to use because they use gestures, but it takes time and is frustrating. s-p8 is unable to answer his mobile phone without assistance, as he cannot hold the phone. he uses special magnifying software on his computer. he says that a voice-operated system would be helpful for him. he uses a custom battery-powered wheelchair, which has a working area (table), where he places his laptop and study books. he needs assistance to get his laptop to and from his work area. he uses a special program, called the grid, to enable him to use a computer. recommendations it was noted that individuals with the same disability experienced similar challenges, but required different levels and types of support. some of the activities mentioned by the participants can be addressed using assistive technology: answering a phone call without assistance (s-p2 and s-p8). having a phone conversation without using a loud speaker (s-p3). using a mobile phone or tablet computer without the need to use swipe gestures (s-p6). using a mouth stick to interact with a computer (s-p3). improving the efficacy of a head-mounted pointer to control the keyboard of a computer (s-p2). enabling individuals to communicate with others, physically and electronically (s-p2). turning lights on or off, controlling a tv and controlling a radio (s-p2 to s-p6). s-p6 said that ‘head gestures and voice commands will help a wide variety of disabled individuals to do small things without assistance’. the participants discussed how their support aids help them to be less dependent on others. the ugandan study discovered that the main challenge that disabled individuals experience is a low quality of life, as they are unable to afford support aids such as wheelchairs and walking sticks. they said that technology support would be good, but would not meet their immediate need for basic support aids. in contrast, the south african participants, having essential support aids, were more positive that aal could improve their lives. depending on the body functioning capabilities of the target users, innovative interactive techniques may need to be developed. for example, a large part of human body language communication is the use of head gestures and facial expressions, and most cultures use subtle head movements to convey meaning (paggio & navarretta 2011). some disabled individuals may benefit from such an interaction mechanism (davis & vaks 2001; wei et al. 2013). the challenges identified from the interview studies that could be addressed using assistive technology are summarised as software design requirements and listed in table 4. individuals with physical disabilities may require different interaction techniques depending on their body limitations. one of the observations from the interaction with individuals with disabilities is the various ways in which they may interact with a similar object of interest. for example, an individual with limited hand use may use his or her feet to turn on a radio, while another individual with limited hand and lower torso use may use his or her mouth to turn a radio on. table 4: software design requirements. interaction is a way of framing the relationship between people and objects designed for them, and thus a way of framing the activity of design (dubberly, pangaro & haque 2009). while able-bodied individuals can freely use their hands to interact with technology using keyboards, computer mouse and swipe gestures, among others, individuals with disabilities may not be able to use these interaction techniques. innovative interaction techniques may need to be considered. the design process of aal services should explore different interaction techniques that may be used by the target users and choose interaction techniques that work best. saleh and berns (2015) proposed an interaction model for facilitating communication between a humanoid robot and a human, both verbally and non-verbally. head gestures were used as feedback for the robot to adapt the interaction scenario. this is an example of using the head shake and nod as an interaction technique. facial features such as the nose and lips can be used as interaction techniques by individuals with disabilities (gips & margrit 2007). the next section proposes a conceptual framework that may be used when deciding which interaction techniques are suitable for a specific group of individuals with disabilities. proposed conceptual framework a framework may be defined as a system of concepts, assumptions, expectations, beliefs and theories that support and inform a research study (maxwell 2013). in multidisciplinary research, multiple bodies of knowledge belonging to different disciplines are explored. a conceptual framework can help in the better understanding of the phenomenon being investigated. the main features of a conceptual framework are (jabareen 2009) the following: it is a construct in which each concept plays an integral role. it provides an interpretive approach to social reality. rather than offering a theoretical explanation, as do quantitative models, conceptual frameworks provide an understanding. a conceptual framework does not provide knowledge of hard facts but rather ‘soft interpretation of intentions’. conceptual frameworks are indeterminist in nature and therefore do not enable us to predict an outcome. conceptual frameworks can be developed and constructed through a process of qualitative analysis. the sources of data consist of many discipline-oriented theories that become the empirical data of the conceptual framework analysis. figure 3 illustrates the proposed framework for designing aal services for individuals with disabilities. the framework is divided into two sections: requirements and design. requirements are concerned with identifying and contextualising software requirements, while design is concerned with delivering usable software for the target users. the various components of the framework are presented below: icf: the icf helps to clearly define the characteristics of the target participants. the characteristics include body functioning and structure. this information is then used to narrow down the scope of a literature study on disability challenges. interview studies: challenges identified from the literature may lack contextual information about a researcher’s intended target audience. the challenges can be used to design open-ended and non-leading questions. a number of probes can also be created from the challenges identified from the literature. the probes are necessary in situations when participants give short answers to questions. probes can help reveal more information. universaal framework components: the analysis of challenges from the literature and interview studies informs the decision on which universaal components should form part of the technological requirements. the universaal components are not exclusive; rather they provide a starting point to think about a solution. requirements: a set of tasks that the intended aal services aim to support. identify interaction techniques: interaction is the way through which individuals are able to use the aal services. the requirements and body limitations of the disability target group inform the initial set of proposed interaction techniques. experimental evaluation: it helps identify practical and usable interaction techniques and also excludes unpractical ones. low-level prototypes or basic software artefacts that use the proposed interaction techniques are designed and implemented. the intended users (individuals with disabilities) are involved in the evaluation of the interaction techniques in order to identify the most suitable one for a given task. one or more evaluations may be carried out. design and implementation of specific aal services: the selected interaction techniques are used to design and implement the aal requirements. usability evaluation: a usability evaluation study is carried out with the target set of participants. the feedback received may be used to improve the artefact. more evaluation studies can be carried out to the satisfaction of the solution developers. aal service release: the developed aal service may be released to the public or for private use. figure 3: a framework for designing aal services for individuals with disabilities. while the descriptions of the components may suffice for some technical users, a guideline on how to use the framework can make it easier to apply. a guideline is presented below and is grouped into two sections: requirements, and design and evaluation. requirements the upper section of the framework is called ‘requirements’. this is because it is concerned with gaining an in-depth understanding of the problem that is being addressed and how the target group of users currently experience and cope with the problem (phenomenon under investigation). identifying requirements involves the following steps: describing persons with a disability in terms of the icf framework: this helps a researcher or solution developer to have a uniform and scientific way of describing the intended users of an artefact. literature review: a description of the intended users is used to narrow down the literature on the types of challenges faced by a group of individuals with disabilities. interview protocol: using the knowledge obtained from the literature study, interview questions are formulated. the interview questions should be designed in such a way that a researcher can gain a better understanding of the phenomenon under investigation. interviewing target users: the protocol is used to interview persons with disabilities, and an analysis of the interview results is used to come up with system requirements of an artefact. technical requirements: the universaal framework is used to identify key aal components that can address requirements identified from the interview studies. design and evaluation the lower section of the framework is called ‘design’. this is because it is concerned with designing an artefact that fulfils the identified requirements. design involves the following steps: identification of interaction mechanisms: low-level prototypes can be used to understand the practicality of interaction mechanisms that are envisioned by a researcher. less practical interaction mechanisms can be eliminated during this stage. experimental evaluation of interaction mechanisms: a prototype of the various interaction mechanisms can be developed and evaluated with a small set of intended users. this can help a researcher to understand how the interaction mechanisms are likely to be received by the users. the researcher can make changes as needed. development of artefact and usability evaluation: once the interaction mechanisms are confirmed, all the features of the artefact can be developed. a usability evaluation is then carried out. the feedback from the evaluation can determine if improvements to the design are necessary; if not, the artefact can then be used by the target users. discussion disability support aids, such as wheelchairs and walking sticks, have gone a long way in enabling individuals with physical disabilities to partake in activities of daily living, such as mobility and personal care. one of the findings from interview studies carried out with individuals with disabilities and their assistants is the need to have technology innovations more accessible to individuals with physical disabilities. the emergence of smart home technologies and its associated interaction mechanisms, such as voice and facial gesture recognition, and context awareness will usher in a new era where accessibility requirements can be met by the nature of the interaction mechanisms. some individuals with a disability may be able to use voice commands for interaction with a smart home environment. for example, aal technology innovations are helping elderly individuals to live independently in their preferred home environments instead of moving into care homes (aal-europe 2013a). a number of aal innovations use innovative interaction techniques, such as reading an individual’s head movements and voice commands, in order to execute commands, such as turning a tv on or off. while some of these aal innovations can also benefit individuals with disabilities, they are designed for able-bodied individuals and do not take into consideration the physical body limitations of people with disabilities. the framework proposed in this article aims to address this gap by proposing a design framework that may help technology innovators to better understand the needs of individuals with disabilities. socio-economic factors of persons with disabilities affect their views on aal innovations. in the case of uganda and south africa, it is important to design aal innovations that are affordable by the target users. the proposed framework emphasises the view that individuals with a similar disability may require different ways to interact with the same technology. hence, it is important to have a narrow set of intended target users who can fully benefit from the innovation, rather than a more general set of users who find limited benefits from the innovation. there is a need to have more accessible technology to cater for the needs of individuals with physical disabilities (dobransky & hargittai 2017). conclusion this article explored the challenges faced by individuals with disabilities, and specifically challenges that may be addressed by using technology. the challenges identified are similar to those found in the existing literature. however, interviewing the participants provided insights into how the socio-economic status of individuals affects their experiencing challenges in daily life. the results of the interviews were used to develop a framework for designing aal services. the framework may assist other researchers and solution developers through the process of requirements gathering up to deployment of the artefact. future studies can make use of the proposed framework as a starting point when designing technology solutions for individuals with disabilities. acknowledgements this research was part of a phd thesis authored by michael kyazze, entitled ‘a framework for designing ambient assisted living software services for disabled individuals’. the research was conducted at nelson mandela university in south africa and a doctoral degree was awarded in april 2018. the author would like to thank the nelson mandela university telkom centre of excellence programme for providing the necessary finance for this research study. competing interests the authors have declared that no competing interests exist. authors’ contributions m.k. was the main researcher, conducted the interview studies and analysed the findings. j.w. supervised the research, helped to analyse the interview study findings and helped edit the manuscript. k.n. co-supervised the research, helped to analyse the technological aspects of the literature study and helped edit the manuscript. ethical considerations ethical clearance to conduct the study was obtained from nelson mandela university (ethical clearance number: h15-sci-css-031), and each of the participants signed a consent form before participating. funding funding for this study was provided by the nelson mandela university telkom centre of excellence programme. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and 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organization (who), 2002, towards a common language for functioning, disability and health icf, vol. 1149, who, viewed 15 may 2015, from http://www.who.int/classifications/icf/training/icfbeginnersguide.pdf. who & world bank, 2011, world report on disability, geneva, viewed 15 may 2015, from http://www.who.int/disabilities/world_report/2011/report.pdf. abstract introduction research methods and design results discussion conclusions acknowledgements references about the author(s) kelsey r. vaughan bang for buck consulting, amsterdam, the netherlands ram k. thapa the international humanitarian action program, university of warsaw, warsaw, poland citation vaughan, k.r. & thapa, r.k., 2023, ‘affordability of an ngo-government partnership for community-based disability rehabilitation’, african journal of disability 12(0), a1283. https://doi.org/10.4102/ajod.v12i0.1283 original research affordability of an ngo-government partnership for community-based disability rehabilitation kelsey r. vaughan, ram k. thapa received: 27 june 2023; accepted: 06 nov. 2023; published: 22 dec. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: tunafasi is a community-based rehabilitation (cbr) programme for persons with disability, implemented by a local non-governmental organisation in uvira, democratic republic of congo, in partnership with government. to assess affordability and support discussions with the government about continued financing and implementation, tunafasi representatives commissioned a cost-effectiveness study of the programme’s health component. objectives: this study aimed to estimate the programme’s impacts, costs, cost per disability-adjusted life year (daly) averted and affordability of the health component implemented from february 2019 to december 2021. method: health-related improvements were assessed for a sample of 511 persons with disability and converted to dalys averted. total expenditure during the period february 2019 to december 2021 was estimated from audited financial statements. the cost per daly averted was estimated by dividing total programme expenditure by the sum of dalys averted and compared against newly generated, country-specific thresholds to assess affordability. results: the programme cost $55 729.00 to implement from february 2019 to december 2021 and averted 234 dalys in 511 persons, at a cost per daly averted of $224.00. this falls above the affordability threshold of $54.00 – $199.00. conclusion: while the cost per daly averted is higher than what thresholds consider affordable for democratic republic of congo, improved engagement from cbr facilitators and greater possibilities for treatment in the post-pandemic era should improve results. contribution: this new cbr implementation modality offers a possibly affordable solution to african governments struggling to operationalise disability commitments such as united nations convention on the rights of persons with disabilities. keywords: health economics; cost per daly averted; disability-adjusted life years; community-based rehabilitation; affordability; health expenditure; disability; uncrpd. introduction the world report on disability estimated that 15% of the global population, equating to around one billion persons, live with some form of disability, 80% of whom are in lowand middle-income countries (lmics) (world health organization [who] 2011). these persons with disabilities (pwds) have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others (united nations n.d.). despite the progress made in recent years, pwds continue to face discrimination and stigma on the grounds of disability, a lack of access to physical environments, assistive devices and essential rehabilitation services, and a lack of support for independent living (who 2018). they are often excluded from education, health, and employment and other aspects of society, leading to an increased risk of poverty (who 2011). following the declaration of alma-ata in 1978, the who endorsed the concept of community-based rehabilitation (cbr) to enhance the quality of life of pwds through multisectoral disability prevention and rehabilitation. since 2006, cbr is guided by a matrix across five components: health, education, livelihood, empowerment and socialisation. under each component, there are five elements, each implemented through specific activities (who 2010). democratic republic of congo (drc) is a low-income country in sub-saharan africa. an estimated 10.5 million (11%) of the country’s 96 million population have one or more disabilities, the result of disease and illness, genetic and chromosomal conditions, poverty and a weak healthcare system as well as ongoing conflict (street child 2018; who 2011). the government of drc has taken several measures to protect pwds, including adopting a disability policy in 2010, ratifying the united nations convention on the rights of persons with disabilities in 2015, enshrining the rights of pwds in the constitution and endorsing a cbr strategy, which is to be implemented by the ministry of health by health zones (ministry of health n.d.). despite these developments, ongoing internal conflict, corruption and other challenges have limited the government’s ability to provide accessible and affordable services for pwds, and various non-governmental organisations (ngos) such as humanity and inclusion, international committee of the red cross, and fédération nationale des associations des personnes vivant avec handicap du congo (fenaphaco) have stepped in to help fill the gap, though these service offerings are often fragmented in nature (street child 2018). in the uvira health zone of south kivu province of eastern drc, appui au développement de l’enfant en detresse (aded), a local ngo, has been facilitating the implementation of a disability prevention and rehabilitation programme under the name ‘tunafasi’ in partnership with the local health zone and with initial financial support from a private foundation in the netherlands. the programme’s overall aim is to enable a positive environment, sustainable autonomy and equal opportunity for pwds under the age of 33 years and their communities through the integration of the cbr programme in the state system and with community contributions. the programme is based on the cbr matrix and modelled after the inspire2care disability prevention and rehabilitation programme, implemented by the karuna foundation in nepal, a nepali ngo (karuna foundation nepal n.d.). tunafasi has brought together a number of organisations and service centres that previously provided fragmented services for pwds in uvira, including sosame (mental health services), centre bethanie (physical rehabilitation), haki yetu, center d’éducation et formation intégré (cefi) and center la providence des sourds d’uvira (cepros) and aded in a network called muungano tegemeza. with initial support from liliane fonds, aded and network partners worked together to expand the range of services offered to encapsulate activities across all five cbr pillars (muungano tegemeza network 2023). together with 22 cbr facilitators (cbrfs), who are government employees with a background in nursing and work at 22 different health facilities, aded officers facilitate the implementation of the programme (aded 2020). disability prevention activities focus on strengthening maternal and child healthcare in the public health centres through training and equipment support and creating demand for services through awareness raising. rehabilitation activities are based on the cbr matrix and are customised to address the unique needs of each pwd. upon their identification, each pwd is assessed by a multidisciplinary team of doctors, physiotherapists, psychologists and other experts, after which an individual rehabilitation plan is jointly developed together with the pwd, his or her family and the cbrf. with the support from aded officers, the cbrfs make home visits, provide counselling to pwds and their families, provide physiotherapy or orient parents on it, facilitate medical treatment of pwds from local health centres, hospitals or referral service centres and link them with local resources. medical rehabilitation may include counselling, physiotherapy, medical treatment, assistive devices, nutrition support and/or referral medical services. the rehabilitation elements under other pillars range from tuition fee support, home-based education, self-help groups, vocational training, saving and credit activities and more. the programme equally works to strengthen the public system (health zone, health centre, schools) as well as the community support system like self-help groups, organisations of pwds and child clubs. community-based rehabilitation facilitators are currently paid by government, while aded officers and other programme costs are supported by private investors from the netherlands. there are plans to fully transition programme funding and implementation to the government and the community within 5 years (aded 2020). with the start of the tunafasi programme, uvira became the only health zone in the country known to be implementing all five cbr pillars (though as of early 2023 tunafasi has now expanded to baraka and goma health zones). six other health zones in south kivu are known to be implementing the health pillar only; for the country as a whole, 37 out of the country’s 517 health zones are known to be implementing the health pillar only. globally, the coverage of cbr is currently very low and there is a lack of available evidence about its effectiveness and cost-effectiveness (iemmi et al. 2013), partially because of methodological challenges related to evaluating across five distinct domains (shumba, haufiku & mitonga 2020). there are also perceptions that health services for pwds are unaffordable for governments, though methods do exist for assessing the cost, cost-effectiveness and affordability of the health component, particularly medical rehabilitation services (united nations n.d.; vaughan & thapa 2015). as part of efforts to encourage rollout of the cbr strategy in other government health zones, tunafasi donors commissioned a cost-effectiveness evaluation and affordability assessment of the first 2 years of implementation of the programme’s medical rehabilitation component. the assessment aimed to generate evidence to support advocacy efforts with the government health zone and community structures about the affordability of medical rehabilitation integrated in the primary healthcare system. research methods and design study objective this study aimed to assess the impacts, costs and cost per disability-adjusted life year (daly) averted of the health component of the tunafasi programme (medical rehabilitation services) implemented from february 2019 to december 2021, to support discussions with the government and potential long-term partners about its long-term affordability. study setting uvira health zone is one of 34 health zones in the south kivu province of eastern drc. uvira city is the largest metropolitan area, with around 350,000 persons and 22 health centres, and is located at the extreme north end of lake tanganyika and linked by roads to bukavu, the capital of south kivu province, and to bujumbura, the economic capital of burundi. assuming 11% of the population has a disability, there are an estimated 38,500 persons living in uvira with a disability. study design this retrospective study of the tunafasi programme was modelled after similar studies conducted in nepal (vaughan & thapa 2015). we assessed costs over a start-up period of 11 months (february 2019–december 2019), and costs, benefits measured in dalys averted and the cost per daly averted of the medical rehabilitation services delivered during the first 2 years of implementation (january 2020 – december 2021). we took a programme (implementer) perspective, meaning only costs and benefits incurred by the implementers (aded and the government) are included. sample we took a purposive sample of the total number of pwds identified by aded as of 31 december 2021 (n = 1200), aiming to include only pwds who had been receiving medical cbr-related services from aded and/or government cbrfs. the final sample selected was based on data availability: there were 764 pwds that had been assessed and a rehabilitative plan developed; some had only recently been assessed or were deemed to have died, been lost to follow-up or represented duplicate records. the final sample included 511 pwds for whom complete information was available. programme data collection and analysis aded staff provided qualitative information about pwd in the sample, including their diagnosed disability(ies) and subtype(s), using standard categories taken from the global burden of disease (gbd) 2019. researchers verified the diagnosed disability(ies) against other information provided about the pwd, such as narrative descriptions of their condition(s) and functional limitations and photos. once confirmed, researchers assigned a disability weight (dw) to each diagnosis. disability weights are standardised values set by the gbd based on multicountry survey data and represent the loss of health on a scale of ‘0’ (perfect health) to ‘1’ (equivalent to death) (table 1) (institute for health metrics and evaluation n.d.). global burden of disease provides no dw for ‘autism’, so we assumed a weight of 0.011. in the case of multiple disability types and/or subtypes for a single person, we summed the weights for each diagnosis and then verified that the combined weight represented the burden caused by the conditions. summed weights that exceeded 1 or were deemed too high were reduced. table 1: disability types, subtypes and disability weights. aded also provided information on the services or treatments received, a narrative description of the health-related changes in each pwd and a classification of their improvement compared to their baseline diagnosis, all as of 31 december 2021. we classified improvement using a standard scale which ranged from ‘0’ to ‘4’, with ‘0’ corresponding to no change in health status (i.e. same as baseline disability diagnosis), ‘1’ representing mild improvement, ‘2’ reflecting moderate improvement, ‘3’ reflecting significant improvement and ‘4’ reflecting that the pwd had been deemed by aded and/or government cbrfs to be fully rehabilitated. a score of ‘4’ was only given in a few cases where the impairment has been medically and/or surgically corrected, for example, a vision-related issue that was resolved with glasses. in other cases, the maximum possible score was a ‘3’ to recognise the continued presence of the disability despite treatment. in a few cases, negative improvements were seen, meaning the condition worsened; for example, the pwd suffered increased epileptic attacks despite taking epilepsy medication. here a ‘0’ was recorded on the assessment improvement scale. researchers cross-referenced narrative descriptions of the starting health state and treatments received with the description of the noted improvement and the improvement scale score to ensure consistency. the improvement scale score was then translated to a change in dw. for each one-point assessment improvement scale increase (e.g. from ‘1’ to ‘2’, or from ‘2’ to ‘3’), the dw was reduced by 25%. for example, a pwd with ‘hearing loss, adult onset: severe or profound, untreated’ received hearing aids and was deemed to have achieved an improvement of ‘3’. the starting dw of 0.204 was reduced by 0.153 (0.75 × 0.204), resulting in a new dw of 0.051 (0.204 – 0.153). this approach is in line with some dws themselves, where different dws are available for different levels of severity of the condition and/or treated and untreated states. the change in dw was then used to calculate dalys averted. dalys are a measure of overall disease burden, expressed as the number of years lost due to ill-health, disability (meaning reduced capacity due to disease) or early death. medical interventions including rehabilitation can avert dalys and increase the number of years that a person lives in good health (anon n.d.). we used the prevalence formula daly = yll + yld, where yll is the years of life lost and yld is the years lost due to disability. years of life lost is assumed to be zero, and yld = i × dw × l, where i is the number of incident cases, dw is the change in disability weight and l is the life expectancy in years (fox-rushby & hanson 2001). life expectancy refers to the duration the benefit will be sustained without further investment. for individuals deemed fully rehabilitated, no further services are needed; therefore, the duration of benefit is the individual’s remaining lifetime (vaughan, thapa & paudel 2018). for all other interventions, it was assumed the benefits were to last the programme’s lifetime (5 years); this was not adjusted to account for the exact remaining programme lifetime as the date of the intervention was unknown. remaining life expectancy from the time of improvement (december 2021) was calculated assuming the average life expectancy at birth for each individual (vaughan et al. 2018), based on the world bank data for drc, minus years of life already lived (their age) as of end 2021 (the world bank n.d.). we attributed 100% of the claimed dalys averted to the tunafasi programme even though some expenditures (such as donated medical services or assistive devices) which contributed to averting these dalys have been excluded from the expenditure calculations. cost data collection and analysis we reviewed programme records, audited financial statements and other financial records and extracted relevant information about expenditures related to medical rehabilitation services during the study period (february 2019 – december 2021) into a microsoft excel analysis file created for this study. expenditures which were related to multiple cbr pillars or shared across pillars (education, livelihood, social and empowerment) were allocated to the health component as a percentage share of health expenditures of all five cbr pillar expenditures, calculated from expenditure records. expenses not related to the health pillar of cbr were excluded. costs incurred by patients (e.g. for travel), their families (e.g. caregivers’ time) or other organisations (e.g. donated devices) were excluded. expenditures exclusively used for the health pillar of cbr were allocated 100%. shared expenses (such as office costs, salaries of staff working on both health and other cbr pillars or non-cbr-related activities) were apportioned to the health pillar on the basis of percentages suggested by advisors to the programme. finally, we adjusted expenditures to reflect the share of the sample of the total population (511/1200), because the total incurred expenditures also reflect the assessment costs incurred for pwds who are not yet receiving services (i.e. n = 1200 − 511 = 689). this adjustment assumes that pwd assessed but who had not yet received services and pwd in the sample incurred the same average expenditure per person, as we have no basis to know the differential in average per person cost between pwd only assessed but not yet receiving services and pwd assessed and receiving services. expenditures deemed to be related to cbr’s health pillar were then classified into four groups: (1) human resources (including aded staff and cbrfs salaries which are paid by the government), (2) implementation (meaning direct programme costs), (3) running costs (such as office expenditures and bank charges) and (4) other. the ‘other’ category encompasses technical assistance (ta) from project advisors, costs related to developing partnerships with other disability-related programmes and the government, and learning-related costs such as conferences. expenditures associated with preparatory activities for the programme (incurred in 2019), and other investment-type expenditures such as training, whose benefits extended over multiple years, were annualised across the programme years (until end 2024) using a 3% discount rate, and then only the annualised expenditures falling inside the study period were included. expenditures were converted from euros to us dollars ($) using the average exchange rate for 2019–2021 (1 euro = $0.87) (the world bank n.d.). cost per disability-adjusted life year averted cost per daly averted was calculated as the adjusted annualised intervention costs from february 2019 to december 2021 divided by the number of dalys averted in the sample. ethical considerations this study used existing financial records and anonymised participant data from aded’s monitoring and evaluation database. no ethical approval was required. results sample characteristics the sample of 511 pwds was 45.0% female and 54.8% male, with one respondent classified as ‘other’. it included pwds up to the age of 33 years; females had an average age of 15.0 years, males 13.8 years, and the sample as a whole 14.4 years. in terms of number of disabilities classified per person, 332 pwds had a single disability (65%), 147 exactly two disabilities (29%), and 32 exactly three disabilities (6%). physical disabilities overwhelmingly dominated the sample (table 2). table 2: types of disability present in the sample. disability-adjusted life years averted in the sample (n = 511), a total of 249.34 dalys were averted, an average of 0.49 dalys per person. this reflects an average improvement of just over one point (1.32) on the improvement scale, indicating a move, for example, from ‘mild’ to ‘moderate’ improvement. however, there were a large number of pwds (n = 118) who saw no improvement. of these, 83 (70%) had not yet received medical rehabilitation services, received services and saw no improvement or refused medical services. this means their improvement score was 0 and therefore 0 dalys were averted. removing these 83 from the sample, we see a slight increase in the average improvement score and average dalys averted per person, from 1.32 to 1.58, representing 0.58 dalys averted per person. cost findings the total cost of the health component of the cbr programme was $130 870.000 over the period february 2019 to december 2021. over two-thirds (64%) of expenditures were for direct programme implementation, around one-fifth (22%) were for staff, 8% were for running costs and 7% were classified as ‘other’ (table 3). table 3: health-related community-based rehabilitation costs by category, 2019–2021 ($). when adjusted to reflect only expenditures corresponding to the sample, the total annualised expenditures for the period 2019–2021 are $55 729.00. cost per disability-adjusted life year averted given the adjusted expenditures ($55 729.00) and number of dalys averted for the sample (249.34), the cost per daly averted is $224.00. discussion the study evaluated the economic efficiency of a newly implemented collaboration between regional health authorities and a local ngo to improve the provision of medical rehabilitation services for pwds in uvira, drc. this study evaluated the costs, dalys averted and cost per daly averted of the programme to assess the feasibility of long-term continuation of the programme without external funding as part of the government’s primary healthcare system. this study estimated that the programme spent $55 729.00 to assess and provide medical rehabilitation services to 511 pwds, which resulted in 234 dalys averted at a cost per daly averted of $224.00. there is little research done on the cost per daly averted of medical rehabilitation services for pwds which can offer a comparison. a previous study was conducted in nepal of a similar disability rehabilitation programme, which found a cost per daly averted of €384.00 – €843.00 (approx. $335.00 – $735.00) (vaughan et al. 2018). however, this assessment used earlier gbd dws and included more adults, for whom fewer dalys are often averted due to their shorter remaining lifespans. therefore, it is hard to directly compare the two studies. previously, it was common to use a threshold defined as three times gross domestic product (gdp) per capita as a guide to determining the cost-effectiveness of health interventions. however, this specific threshold approach has fallen out of use after multiple criticisms over its failure to consider local resource availability (bertram et al. 2016; leech et al. 2018; robinson et al. 2016). two alternatives to assess affordability include comparing against a benchmark intervention already offered by the health system (but there are no known comparators for drc), and country-specific cost per daly averted thresholds that reflect health opportunity costs. there are currently two such thresholds for drc. ochalek and colleagues used estimated elasticities on mortality, survival, morbidity and dalys, while also taking into account infrastructure, changes in donor funding, country-specific data on health expenditure, epidemiology and demographics, to estimate a threshold of $54.00 – $69.00 per daly averted (2015 us$, approx. $62.00 – $79.00 in 2021), which is only 12% – 15% of the gdp per capita for drc (ochalek, lomas & claxton 2018). a similar approach was used by daroudi and colleagues, who used evidence from the gbd study, per capita health expenditure, human development index (hdi) score and gdp per capita for 176 countries over the period 2000 to 2016 (daroudi et al. 2021). they found the threshold cost per daly averted was, on average, 0.34 times the gdp per capita in low hdi countries like drc. this would equate to an approximate threshold of $199.00, based on the 2021 gdp per capita of $584, in our setting. our cost per daly averted estimate of $224 is above both thresholds, but still lower than roughly half of other interventions implemented in lmic settings (horton 2018). it is also important to note that while cost-effectiveness and affordability are important from an economic standpoint, value of particular interventions and their incorporation in, for example, essential health benefit packages guaranteed by government is normally guided by a wider range of criteria, among others, burden of disease, equity and feasibility (hayati et al. 2018; horton 2018). guaranteeing these services despite their cost per daly averted falling above affordability thresholds would be a timely operationalisation of the june 2022 law which aims to better promote and protect the rights of pwds (uncrpd fund n.d.). although some exceptional cases will likely still require outside support to treat in the future, this study has shown that the majority of pwds can receive medical rehabilitation services from government in a cost-effective way. the innovative implementation of this programme, through the government’s primary healthcare system and with initial, limited-term external financial support from investors in the netherlands, offers a promising alternative to the more traditional model of fragmented rehabilitation activities implemented by various ngos, often in parallel with government efforts. however, lobbying and advocacy efforts with the government are needed to ensure a financial commitment to fully finance medical rehabilitation when external support ends, which can be secured by tapping into government funding envelopes specifically available for vulnerable populations. health spending in drc is among the lowest in the world, both as a total ($19.69 per capita in 2018 [2020 us$]) and in terms of government’s contribution ($2.62 per capita [13%]) (the world bank n.d.). given the population of uvira (387 421), the tunafasi programme costs approximately $0.14 per person per year, of which the government’s share is presently 5.3% or less than $0.01 per person per year. local authorities can already start taking over an increasing share of costs of and responsibility for the programme by increasing the level of effort of the part-time cbrfs and providing them with necessary training and financial as well as non-financial motivation. community-based rehabilitation programmes are traditionally challenging to evaluate, namely because of their breadth across health, education, livelihoods, empowerment and social aspects (hartley 2016). our study has focused on costs and health-related gains of medical rehabilitation services, given the existence and suitability of the daly as a metric for measuring improvements as a result of medical rehabilitation. we also chose to focus on medical rehabilitation given the need to assess the long-term affordability of the programme in terms that can be easily understood by the ministry of health, given that cbr is housed in the ministry of health in drc and the daly is the most common outcome measure for health services in lmics. however, we have not captured some of the major benefits stemming from cbr programmes’ four other pillars, such as increased community mobilisation around disability, skills gained by the members of families of pwds, improvements in attitudes of community members towards pwds and social cohesion. this is an important limitation of our study (vaughan et al. 2018). conclusions medical rehabilitation services can be affordable for government in lmic settings such as drc and represent good value for money at a cost per daly averted of $224.00. the implementation and funding model presented in this article, through the government’s primary healthcare system and with initial external financial support from investors, can be considered for replication in other lmics. acknowledgements the authors would like to express our sincere gratitude to gilbert mututsi ruturutsa, packos ruteyi and cedric mukiza from aded for their continuous support for this study and assistance with data collection. we are also grateful to betteke de gaay fortman, coordinator of stichting impaction, for her input to the study design and critical review of the manuscript. competing interests k.r.v. was a paid consultant who assessed the cost, impact, cost-effectiveness and affordability of the programme, while r.k.t. was a paid consultant to the programme. authors’ contributions k.r.v. led the design, analysis and reporting of the study. r.k.t. helped in data collection. both authors contributed to the development of the manuscript. funding information the research reported on in this manuscript was supported by two dutch investors of the tunafasi programme. data availability the authors confirm that the data supporting the findings of this study are available within the article. disclaimer the views expressed in this article are the authors’ own and not an official position of aded, stichting impaction and its investors, the provincial government of uvira or the government of the democratic republic of congo. references aded, 2020, tunafasi program-strategic plan 2020–24, s.n., s.l. bertram, m., lauer, j.a., de joncheere, k., edejer, t., hutubessy, r., kienya, m.k. et al., 2016, ‘cost-effectiveness thresholds: pros and cons’, bulletin of the world health organization 94, 925–930. center for the evaluation of value and risk in health (cevr), tufts medical center, n.d., global health cea registry, viewed may 2023, from http://ghcearegistry.org/orchard/the-daly#:~:text=health%20interventions%20seek%20to%20avert,age%20of%20death%20. daroudi, r., akbari sari, a., nahvijou, a. & faramarzi, a., 2021, ‘cost per daly averted in low, middleand high-income countries: evidence 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resch, s., 2016, ‘understanding and improving the one and three times gdp per capita cost-effectiveness thresholds’, health policy and planning 32(1), 141–145. shumba, t.w, haufiku, h. & mitonga, k.h., 2020, ‘the evolution of community-based rehabilitation (cbr) programmes: a call for mixed evaluation methodologies’, journal of health research 34(6), 505–514. street child, 2018, a rapid assessment of the prevalence and impact of disabilities among children on the high plateau in south kivu, drc, s.n., s.l. the world bank, n.d., world development indicators, viewed may 2023, from https://data.worldbank.org/indicator/ny.gdp.pcap.cd?locations=cd. uncrpd fund, n.d., empowering duty bearers to uphold the rights of persons with disabilities in drc, viewed 26 may 2023, from https://www.unprpd.org/programme/drc. united nations, n.d., toolkit on disability for africa : inclusive health services for persons with disability, s.n., s.l. vaughan, k. & thapa, a., 2015, ‘cost-effectiveness of a community-based rehabilitation programme in nepal’, disability, cbr and inclusive development 26(4). vaughan, k., thapa, a. & paudel, r., 2018, cost-effectiveness assessment of the inspire2care program in ilam, s.n., s.l. world health organization (who), 2010, community-based rehabilitation: cbr guidelines, s.n., s.l. world health organization (who), 2011, world report on disability 2011, s.n., s.l. world health organization (who), 2018, disability and development report. realizing the sustainable development goals by, for and with persons with disabilities, s.n., s.l. article information author: mbulaheni maguvhe1 affiliation: 1department of inclusive education, school of educational studies, university of south africa, south africa correspondence to: mbulaheni maguvhe email: maguvmo@unisa.ac.za postal address: po box 392, unisa 0003, south africa dates: received: 23 feb. 2015 accepted: 08 sept. 2015 published: 04 nov. 2015 how to cite this article: maguvhe, m., 2015, ‘inclusive education: a transformation and human rights agenda under spotlight in south africa’, african journal of disability 4(1), art. #183, 7 pages. http://dx.doi.org/10.4102/ajod.v4i1.183 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. inclusive education: a transformation and human rights agenda under spotlight in south africa in this original research... open access • abstract • introduction • research objectives • theoretical framework    • aim of the study    • research questions • methodology    • design    • sample    • instruments    • data collection procedures    • data analysis    • ethical issues • discussion    • inclusive education and the transformation and human rights agenda    • accommodating learners with diverse learning needs    • contribution by role players to the national transformation agenda    • the enhancement of the transformation and human rights agenda • results • recommendations • conclusion • acknowledgements    • competing interests • references abstract top ↑ this study investigated the progress made in the implementation of inclusive education as a transformation and human rights tool since its inception in 2001. the study was conducted upon realising that most people underestimate the transformation and human rights value that inclusive education strives to maintain. the total number of participants interviewed was 84. data was collected using semi-structured interview schedules for the teachers and community members, whereafter it was presented in thematic sections and qualitatively examined for meaning. the results showed that participants comprising teachers and community members do not know or understand the transformational and human rights value of inclusive education. the participants seemed to be equally aware of inclusive education, but they rated its success and value differently. the participants concurred that the philosophy of inclusive education was noble, but they differed regarding the extent to which it had transformed, added value or played an advocacy role in the lives of learners and the community at large over the years. introduction top ↑ the practice of inclusive education in south africa is underpinned by six democratic assertions: all children and youth can learn under conducive learning circumstances and need unwavering, ongoing support; there ought to be relevant support structures, ideal systems and methodologies that enable such support in the education system; learners are different and the differences must be both acknowledged and respected; learning does not only take place in the formal school, but also at home and in the community; changes have to be made to attitudes, behaviour, teaching methods, curriculum and environment to meet the diverse and sometimes complex learning needs of all learners; and all such efforts ought to be aimed at minimising barriers to learning while maximising the participation of all learners in the curriculum and culture of their educational institutions (department of education [doe] 2001:6). mcconkey (2003:10) argues that inclusive education promotes ‘full participation and equality’ through enabling children with disabilities from restrictive family backgrounds a chance to interact with others and participate in the life of their communities. thus, inclusive education is a transformation tool, a human right and a democratic way of understanding values and forming beliefs, which welcome (and actually celebrate) human diversity (rieser 2005; swart & pettipher 2005:8). the democratic affirmations that justify inclusive education also draw the parameters of the operational meaning of the philosophy, thereby defining the upper limits of the possibility of its implementation in the education system. the meaning of inclusive education that has been embedded in the minds of many is that it is about including the traditionally excluded, such as learners with sensory, learning and physical disabilities. it does not explicitly include learners who face barriers that are due to poverty and low socio-economic status yet, they should be considered (prinsloo 2005:28). this view has narrowed the national focus on moving the inclusive education agenda. the democratic angle of inclusive education has been applied to learners with learning, sensory and physical disabilities. for schools to be truly inclusive, they need to consider whether all those learners who have never been part of the mainstream have been welcomed, and seek to make the environment truly welcoming to all, irrespective of their significant differences. through true inclusive participation, children experiencing barriers to learning realise genuine chances for information sharing and develop self-representation skills (maguvhe 2015:133). a more detailed understanding must include learners in particularly precarious life circumstances and adverse socio-economic conditions so that all the learners feel welcome, irrespective of their ethnic groups, languages, religions, social classes, gender, sexuality or disabilities (swart & phasha 2005:214). thus, questions on power dynamics, diversity and difference are attended to when there is contentment among learners, and the focus is no longer on adapting the environment for only certain groups. the machinery that should move inclusive education forward has to be guided by the national department of education’ s (2002) notion of the implementation entailments: inclusive education is about the whole education system from the national, provincial and district offices of the department of education, to individual schools and their communities, and to individual teachers and learners. (p. 4) teachers must make sure that the philosophical orientation to inclusive education and its practice reaches every department of education and every learner. teachers are important catalysts for inclusive education – there are some who have questioned the success of the inclusive education drive since its inception in 2001, mainly because the teachers are not adequately trained (chataika et al. 2012; dalton, mckenzie & kahonde 2012), or they are not confident that they have mastered the content of their training in inclusive education (walton et al. 2014). to achieve efficacy and confidence, teachers need ongoing training (wiazowski 2012). the focus is on the measures that could bring about effective inclusive education in view of the fact that inclusive schooling is still teething in the 14th year since its implementation. the inertia that is being experienced in the widespread implementation of inclusive education is reason enough for anyone to suspect that the current methods of educating people to develop a conviction in inclusive education are not capable of changing people towards voluntary participation in the process. notwithstanding the definition people use to include all who should learn in a democratic school environment, the application of the inclusive education policy depends on the positive actions of all role players. the perspectives of those involved in the inclusive education initiative have to be transformed before they could become advocates of the agenda for inclusivity. a change in perspective, through transformative learning, comprises three processes an individual should undergo psychologically: the learners must undergo shifts in understanding themselves as a result of new information the learners must experience a shift in their personal beliefs (convictions) the learners must change their behaviours to adopt a matching lifestyle (ed. mezirow 2000). these three processes are under the learners’ realm of control since it is the learners who decide on personal actions. transformative learning applies mostly to adults, as they can engage their old beliefs using new information and resolve to believe differently from a certain kind of ‘knowing’ that was a part of them (ed. mezirow 2000). this implies the need for a strong conviction with regard to the importance of inclusive education on the part of policymakers and teachers. the complex issue about the drive for inclusive education is that there are vast methodological and implementation differences across countries. in some countries, the placement process for learners with special learning needs is clearer than in other countries. in the united states of america (usa), the process of placing children with special learning needs in schools of choice is clearly outlined in sequential steps for parents to follow. most children with special learning needs are educated in mainstream schools. parents have the responsibility to follow the guidelines provided in making a choice of an appropriate school, bearing in mind the culture that they want their child to experience, as well as the capacity of the school to accommodate the learner's unique learning needs (united states department of education 2007). in the united kingdom (uk), mainstream schools absorb the majority of students with disabilities. these schools absorb about 64% of blind and partially sighted students. there are also resourced schools and special schools. schools that are privately owned mostly provide residential facilities, while those funded by local authorities are day schools. only academies are funded by the department for education (dfe). the choice of a school is the responsibility of parents, but they are guided by a local authority list of suitable schools (royal national institute for the blind 2015). the royal national institute for the blind emphasises the need for parents to visit every school listed by the local authority to ensure that the school is able to satisfy the learning needs of the child. the placement process in kenya is different from practices in the usa and the uk since student identification, assessment and placement are the responsibility of educational assessment and resource centres (earcs), a division within the kenyan ministry of education (cbm 2015). the role of parents in the placement process is not clearly defined in the kenyan student placement process. in south africa (sa), as in the usa and in the uk, it is every child's democratic right to attend a school that is nearest to his or her home. the difference is that in sa there are few full-service schools that can accommodate learners with special learning needs, giving mainstream schools the latitude to refuse admission of learners with special learning needs (if they feel they are not well-equipped to provide for the child's unique learning needs). besides, parents are not provided with clear step-by-step guidelines on how to choose appropriate mainstream schools for their children. parents are also not adequately educated on the need to play an active role in the selection of appropriate schools for their children. in practice in sa, therefore, the right to education does not extend to the right to make a choice of a specific school in the child's home area. this means that, although pupils have the right to attend any of the schools in their residential area, nothing could be done if these schools refuse to admit them. van rooyen, le grange and newmark (2002) observe that south african education policies are contradictory to each other such that they do not align well enough to enable smooth implementation of inclusive education. this makes more poignant the fact that the struggle for education as a human rights agenda may not be over yet. pather (2011) recommends constant revisits to the policy of inclusion to fine-tune mechanisms for implementation. research objectives top ↑ the major objective of the study was to investigate the extent to which inclusive education has transformed the south african school system to take stock of the progress made in implementing inclusive education as a transformation and human rights tool. theoretical framework top ↑ the present study is underpinned by the systems theory, which is a science of organisations and their wholeness (higgs & smith 2006:27). human beings, like the schools that teach them, are systems. the development of individuals to their optimum level of complexity is closely related to what they learn and how they learn in their institutions of learning. the development of schools into comprehensive and optimally beneficial entities is of paramount importance. systems influence each other, so that people have an influence on the development of schools, religions, industry and hospitals as much as those institutions influence people. it is important for people to advance the utility value of schools as regards their inclusivity so that the schools would help to transform human society positively. aim of the study the aim of the study was to understand the views of school-level stakeholders on the progress made in the implementation of inclusive education. research questions below are the research questions the researcher asked the participants: to what extent, has the education system transformed in respect of inclusivity since 1994? is the south african education system now better equipped to accommodate learners with diverse learning needs than it was before democratic rule? how do role players in education contribute to the national transformation agenda? how can the transformation and human rights agenda be enhanced on inclusion of learners with disabilities? methodology top ↑ design the study used a qualitative survey research design. the design was preferred for its suitability to the collection of opinions about a phenomenon (gray 2004; mcmillan & schumacher 2010). sample the sample comprised 60 teachers (28 males and 32 females), 12 members of school governing bodies (six males and six females) and 12 representatives of community-based disabled persons’ organisations (seven males and five females). the particular teachers included in the sample were granted permission to participate in the study by their principals, and they were selected because they were recommended by peers as having good background knowledge on inclusive education. the sample of teachers was drawn from six mainstream schools from four provinces, namely limpopo, gauteng, north west province and the free state. those schools were purposely sampled as they are designated ‘full-service schools’, which should be offering inclusive education by now. randomly picking any mainstream schools would not have shown the progress of implementing the inclusive education master plan as articulated in education white paper 6 of 2001. the sample of community members (sgb and dpo representatives) was drawn from each school community such that there were two members of the school governing body (sgb) and two representatives of disabled persons’ organisations (dpos) from each school community. each sgb and dpo nominated his or her preferred representatives. the total number of participants interviewed was 84. instruments two sets of semi-structured interview schedules were used to collect data: one set was for gathering data from teachers and the other for gathering data from members of sgbs and dpos. the trustworthiness of the instruments was tested through a pilot study run among teachers, sgb representatives and representatives of community-based dpos from four schools, which were not used for the final data collection process (golafshani 2003). data collection procedures the study was informed by the views expressed by 60 teachers from six mainstream schools and 24 community members, comprising 12 sgb members and 12 representatives of local dpos. the researcher used 12 focus groups two per school. for each school, one group was composed of eight teachers (to capture the views of teachers) and the other focus group of six participants comprised two teachers, two sgb members and two representatives of a dpo (to capture mainly the views of community members). in this way, it was possible to cater for the literacy levels and experiences of the teachers and community members using two different instruments in terms of how they would understand the questions and formulate their responses – most notably on responses made by community members. data analysis data were presented in thematic sections that arose from responses and interviews. the data were then qualitatively examined for meaning. the responses of teachers and community members were interpreted with reference to documented national policies and published international developments in inclusive education, in light of grounded theory and social ecological models (swart & pettipher 2005:6) applied to education. ethical issues all teachers and community members participated voluntarily. all participants were free not to participate and to withdraw at any time without reprisals, and they did not have to answer questions that made them feel uncomfortable. the participants were also assured of the confidentiality of the inputs and their anonymity in the whole research process. it was made known to the participants that data were collected only for the purposes of the present study as described. discussion top ↑ the discussion below follows the four research questions on inclusive education and the transformation and human rights agenda, presented earlier. inclusive education and the transformation and human rights agenda question 1: to what extent has the education system transformed in respect of inclusivity since 1994? over three-quarters (59) of the participants were of the view that the transformation and human rights agenda in sa was not on track. they ascribed this to the fact that there were only a few designated full-service schools in the department of education's white paper 6. only these few designated full-service schools have the capacity to provide for the needs of learners facing various barriers to learning, which is to the detriment of the majority of learners. the following verbal quotes support these findings: ‘transformation towards inclusive education … no! we need to admit all learners. how can our school admit and cater for them while we are not trained, equipped and better prepared, and without any facelift of the infrastructure?’ (teacher from school a) ‘we are aware that … learners are members of our communities and [by] admitting them for the sake of admitting, we shall be committing a serious crime. i think if we do not teach them like any child we … admit, we have failed’. (teacher from school a) ‘it is not on track, no. i myself, i only hear on [the] radio – especially [on] the educator/learner support programme that it is on track. mind you, these are departmental officials. they cannot say it is not on track’. (community member from school a) ‘we have learners with disabilities in our community. eish, i bat, the receive low quality education [sic]. teachers are not au fait with methodologies of including them. they fail. as a community, we are to blame as well. we do not ask for ideas from other communities where this system … works well’. (community member from school c) van louw and beets (2008) maintains that striving for academic excellence in higher education is not restricted to south africa, ‘but is in actual fact a global phenomenon that is primarily manifested in the manner in which knowledge production is achieved’. this supports the notion that even inclusive education schools ought to transform. through systems theory it is evident that incompletely developed schools have a retrogressive influence on human society. as human society has pointed to the benefits of inclusivity, schools must be developed to a point where they advance the social realities of people as systems that are in need of optimum development (higgs & smith 2006:30). problems causing the slow pace at which inclusive education is being implemented in sa need to be carefully analysed so that solutions can be found. accommodating learners with diverse learning needs question 2: is the south african education system now better equipped to accommodate learners with diverse learning needs than it was before democratic rule? participants indicated that schools in urban areas were somewhat better equipped to accommodate learners with diverse learning needs than those in rural areas. this statement is supported by the department of education (2011) when it argues that one of the most significant barriers to learning remains the inability of learners to access the educational provision that does exist, as well as their inability to access other services that contribute to the learning process. the previous cited author went further, arguing that, in most instances, the inability to access educational provision results from inadequate or non-existent services and facilities, which are key to participation in the learning process. participants’ observations concur with mukuria and obiakor’ s (2004) observation that resources for programme implementation were often scarce in poorer communities in the african diaspora. hence, rural schools had fewer resources than urban schools. it is important for stakeholders to examine alternative solutions to the problem and equip rural schools, so that they offer optimum benefit to their learners. according to participants, access to services and facilities in urban areas could be attributed to the availability of things such as accessible transport, buildings that meet universal access standards, educated parents who are involved in the education of their children, learners’ access to information due to facilities like tape aids for the visually impaired and print-disabled, and braille services that can convert material into accessible formats. however, participants indicated that mainstream schools did not utilise these resources to accommodate learners with diverse needs. the following verbal quotes illustrate the findings: ‘the situation in urban areas is far … better when compared to the rural one. there, support is in abundance. learners are ferried to and from schools by public transport’. (teacher from school a) ‘educated parents would fight fiercely for their children's rights if they [were] trampled upon. however, in rural areas, we see the opposite because the illiteracy level among parents is still high’. (teacher from school b) ‘most of the things that make education accessible in rural areas are not there. can you imagine, some learners still use donkey carts or ox wagons as a means of transport?’ (teacher from school c) ‘learners do not have access to specialised machines and books for their studies and do not even know that there are facilities in big cities where they can send them for conversion’. (teacher from school d) the community members in the study revealed that inclusive education had not changed the profile of the rural child as much as that of the urban child. the following verbal quotes illustrate these findings: ‘it will take mengwagangwaga, i mean years if not decades for the rural schools to be better equipped to accommodate all learners. how will schools transform if as parents we do not add our voices to … advocating for the provision of resources’. (one community participant from school a) ‘aralizeileludzi zwi hone, ndi zwithukhuthukhunahone azwi vhonalinaluthihi [if resource provision in regards resources is there, it is very minimal and is not noticeable]’.(one community participant from school b) ‘ritshisedzambalombalo, vhanavha re zwikolonizwannyinannyi, vhatshevhanevhalavhaneravhadivha [when we look at statistics, the number of learners at mainstream schools is still the same we know]’. (one community participant from school c) ‘tshandukoyavhukuma i tutuwedzwana u di sendekakhazwikonazwile­ludzizwapfunzozwoteaho [true change is influenced and hinges on relevant resources and the right infrastructure]’. (one community participant from school d) ‘a diversity of learners and changing the face of schools? just a wild dream! rural areas will never be on par with urban areas when it comes to the admission of learners. our schools do not have resources suited for their intricate needs’. (one community participant from school d) ‘teachers are in the dark in [regard to] the implementation of inclusive education. actually, the majority of them see it as a fearful monster coming to devour them. if rural areas can receive the kind and level of support that urban areas receive, i believe we would see or notice a significant change in the learner profile’. (one community participant from school b) contribution by role players to the national transformation agenda question 3: how do role players in education contribute to the national transformation agenda? according to the ministry of education singapore (2015), there are many stakeholders in education, each of whom needs to play their role effectively and efficiently in order to help all children learn better and reach their full potential. for example, parents must support schools in their efforts to educate the child, teachers must care deeply for the character and moral development of students through both words and actions, communities must welcome and encourage the youth to be involved in the community activities, and so forth. there were 74 participants that were of the view that stakeholders were not playing their part in the transformation agenda. apparently, stakeholders were passing the buck thinking it was somebody else's responsibility to play a meaningful role in the education of learners with disabilities in mainstream schools. the following verbal quotes illustrate these findings: ‘it is a pity, [the] national department thinks that the province is the right structure and stakeholder to see that inclusion materialises. the province also thinks [it is] the district, and the district office thinks it is the circuit… it is a circus’. (teacher from school b) ‘schools expect too much from their communities just because in the african culture, any adult member of society is a parent and should play that parental role of teacher/guide’. (teacher from school c) ‘things are easier said than done. when you listen to authorities, it is all systems go pertaining to inclusive education. everybody is playing his part. however, the reality is that we are just scratching the surface when it comes to stakeholder participation’. (teacher from school c) ‘i suspect this could be due to unclear roles each and every stakeholder has to play or [the] thinking [that] somebody else [will] play dual or triple roles. for instance, as a teacher, my role is to teach and not make provisions for resources, policy, etc.’ (teacher from school a) ‘our roles and power differ remarkably. for transformation to take place in earnest, it is incumbent upon us all to do what is expected of us or [what we are] mandated to do’. (teacher from school d) in line with systems theory, it is the efforts of key stakeholders, such as the department of basic education, to examine the resourcing woes of full service schools openly and to provide the inputs required by the education system so that it would be able to make a meaningful output in the form of genuine inclusive education, which in turn benefits the south african society (higgs & smith 2006:30) the enhancement of the transformation and human rights agenda question 4: how can the transformation and human rights agenda be enhanced to include learners with disabilities? there were 67 participants who were in agreement that factors such as clear inclusive education guidelines and policies, adherence to implementation timeframes, high conviction in the policy among key reformers, and active participation of communities in inclusive education could enhance it tremendously. the following verbal quotes illustrate the findings: ‘well-crafted policies with tight timelines and good monitoring and evaluation instruments could lead to transformation being realised’. (teacher from school a) ‘if implementers of policy understand that which they have to implement, i cannot foresee any hindrance for transformation to take off the ground’. (teacher from school c) ‘this should be coupled with zeal, devotion, dedication, commitment, and of course, proper control of events and situations’. (teacher from school c) according to education transformation (2015), all systems and schools have assets that could be developed and enhanced to achieve significant improvements in students’ learning and school performance. in this context, best practices need to be harnessed, teaching methodology must be enriched, parents should be engaged in new ways, and appropriate technology should be available to provide access and improve quality of learning for more students. results top ↑ the study revealed that transformation towards inclusive education is slow. the participants identified a lack of training as one of the reasons for the reluctance to participate in the programme. the result concurs with mezirow's (ed. 2000) view that adults only adopt change wholeheartedly if they have successfully undergone transformative learning. transformative learning ensures change in personal beliefs around any philosophy, and with the new convictions comes behaviour change, which features changes, such as a new (matching) lifestyle. following this theory, it will be meaningless to discuss inclusive education and the democratic observation of all learners without putting transformative learning in place at workshops and awareness raising courses, which are meant for practitioners at national, provincial and district education offices. with their newly found conviction for successful learning, they could develop school-level staff on the entailments of voluntary participation in daily practices, which will ensure successful inclusive education. the other setback is a lack of resources, which maguvhe (2005) also alluded to. genuine practice is the embodiment of inclusivity as a human right. the study further revealed that changes in the outlook of learners in terms of their diversity in a school, their schooling environment, and the contents of their school bags were more noticeable in urban areas than in rural areas. one of the findings of the study revealed that the positive impact of educational provisioning is more felt in urban than in the rural areas. the department of education (2001:6) specifies that support structures will be established for inclusive education, which will attend to adequate material provisioning and proper practitioner training for the necessary change to take place in attitudes, behaviour, teaching methods, curricular and the environment. there is a slow movement towards the inclusivity agenda, which means that some diverse and sometimes complex learning needs of different learners are not yet adequately met. systems theory informs the need for open examination of the school system in order to identify implementation blind spots and to correct them quickly, as well as for the social benefits that come with school improvements on inclusivity (higgs & smith 2006:30). the study further revealed that the key stakeholders did not perform as expected, as if they were not sure of their roles. this apparent uneasiness with designated roles could have been the reason for them expecting too much from one another. the role of everyone in the inclusive education playing field is important, according to the national department of education’ s (2002:4) observation. it is, therefore, expected that everyone's role should be crystal clear to avoid role conflict. even the learner's role must be clarified through good, evidence-based teaching practices. the literature points out that teachers are not adequately trained (chataika et al. 2012; dalton et al. 2012) to meet the challenges of inclusive education. it is more informative to investigate whether higher authorities at district, provincial and national education offices are adequately trained to articulate downstream what policy dictates. lastly, the study revealed that the policy on inclusive education was not well-aligned with its implementation tools, making it difficult to enable teachers to train and communities to see hope in a changing society. a lack of touch with the skills development context for transformative education is evident among teachers (walton et al. 2014). some teachers have become defiant or uncooperative regarding their work as agents of inclusive education. they would need transformative training to elevate inclusive education to the level of a human right. recommendations top ↑ inclusive education seems to be going nowhere. it is, therefore, recommended that: a massive awareness campaign is driven in rural areas so that communities will know and understand their role in supporting learners with disabilities. support structures must be reviewed so that even the community is officially mandated to play a meaningful role, with its responsibilities clearly identified in the education policy so that the community can be held accountable if it is not playing the desired role. teachers and school management teams must be trained and encouraged to enrol with higher education institutions to acquire qualifications that are relevant to inclusive education, apart from the crash courses they attended. such comprehensive training and ongoing professional peer support and collaboration are critical components of transformational learning. all matters must be considered when planning inclusive education especially those discussed under theme 4 for inclusion to work. the ‘bathopele’ principle is applied at inclusive education schools. this will attract learners in rural areas and make them understand that they will receive quality education regardless of where they are. conclusion top ↑ stakeholders need to ensure that there is co-operation, teacher/learner support systems, community involvement and a proper system of inclusive education, which is implemented by means of the teacher and learner population with the involvement of non-governmental and non-profit organisations, institutions of higher learning, research institutions, early childhood development centres, community education training centres and so forth. all of us need to participate and play our part in inclusive education. in order for teachers and learners to form new beliefs around inclusive education and to effect real change for learners to ‘live’ inclusive education, there is a need for significant changes in the way that people in educational administration at national, provincial, district and school-level understand themselves in relation to inclusive education. acknowledgements top ↑ competing interests the author declares that he has no financial or personal relationships that may have inappropriately influenced him in writing this article. references top ↑ cbm, 2015, special needs education programmes, cbm, nairobi. chataika, t., mckenzie, j.a., swart, e. & lyner-cleophas, m., 2012, ‘access to education in africa: responding to the united nations convention on the rights of persons with disabilities’, disability & society 27(3), 385–398. http://dx.doi.org/10.1080/09687599.2012.654989 dalton, e.m., mckenzie, j.a. & kahonde, c., 2012, ‘the implementation of inclusive education in south africa: reflections arising from a workshop for teachers and therapists to introduce universal design for learning’, african journal of disability 1(1), 13–17. http://dx.doi.org/10.4102/ajod.v1i1.13 department of education, 2001, education white paper 6. special needs education: building an inclusive education and training system, department of education, pretoria. department of education, 2011, ‘barriers to learning and development’, viewed 6 may 2015, from http://www.slideshare.nett/kiraikenkes/barriers-to-learning education transformation, 2015, leading from who we are, part 1: a catalyst for transformation, viewed 06 may 2015, from http://www.educationtransformation.org golafshani, n., 2003, ‘understanding reliability and validity in qualitative research’, the qualitative report 8(4), 597–607. gray, d.e., 2004, doing research in the real world, sage publications ltd., new delhi. higgs, p. & smith, j., 2006, rethinking truth, 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(ed.), 2000, learning as transformation: critical perspectives in a theory in progress, jossey-bass, san francisco. ministry of education singapore, 2015, ‘stakeholders in education’, viewed 06 may 2015, from http://www.moe.gov.sg/compass/resources/stakeholders-in-education mukuria, g. & obiakor, f.e., 2004, ‘special education and africa diaspora’, journal of international special needs education 7, 12–17. national department of education, 2002, implementing inclusive education in south africa: true stories we can learn from, department of education, pretoria. pather, s., 2011, ‘evidence on inclusion and support for learners with disabilities in mainstream schools in south africa: off the policy radar?’, international journal of inclusive education 15(10), 1103–1117. http://dx.doi.org/10.1080/13603116.2011.555075 prinsloo, e., 2005, ‘socio-economic barriers to learning in contemporary society’, in e. landsberg, d. kruger & n. nel (eds.), addressing barriers to learning: a south african perspective, pp. 27–42, van schaik, pretoria. rieser, r., 2005, ‘inclusion, empowerment and the role of disabled people and their thinking’, viewed 3 may 2015, from https://books.google.co.za/books?hl=en&lr=&id=xcsgawaaqbaj&oi=fnd&pg=pa365&dq=reiser,+r.,+(2005,).+%e2%80%98inclusion,+empowerment+and+the+role+of+disabled+people+and+their+thinking%e2%80%99&ots=rfmdmp-liy&sig=5ipozjpjuryozcopibljih2nkwk#v=onepage&q&f=false royal national institute for the blind, 2015, choosing a school, rnib, london. swart, e. & pettipher, r., 2005, ‘a framework for understanding inclusion’, in e. landsberg, d. kruger & n. nel (eds.), addressing barriers to learning: a south african perspective, pp. 3–23, van schaik publishers, pretoria. swart, e. & phasha, t., 2005, ‘family and community partnerships’, in e. landsberg, d. kruger & n. nel (eds.), addressing barriers to learning: a south african perspective, pp. 213–236, van schaik publishers, pretoria. united states department of education, 2007, ‘no child left behind: choosing a school for your child’, viewed 07 june 2015, from http://www.ed.gov/parents/school/find/choose van louw, t. & beets, p.a.d., 2008, ‘the transformation of higher education: context of the establishment of the centre for leadership and management in education at stellenbosch university’, south african journal of higher education 22(3), 473–483. van rooyen, b., le grange, l. & newmark, r., 2002, ‘(de)constructions of functionalist discourses in south africa's education white paper 6: specials needs education’, international journal of special education 17(2), 1–13. walton, e., nel, n.m., muller, h. & lebeloane, o., 2014, ‘“you can train us until we are blue in our faces, we are still going to struggle”: teacher professional learning in a full-service school’, education as change 18(2), 319–333. http://dx.doi.org/10.1080/16823206.2014.926827 wiazowski, j., 2012, ‘on the dirt road to inclusion’, international journal of special education 27(2), 148–155. abstract introduction research design and methodology results discussion conclusion acknowledgements references about the author(s) margaret chauke department of inclusive education, college of education, university of south africa, pretoria, south africa raesetja g. ledwaba department of inclusive education, college of education, university of south africa, pretoria, south africa jacomina m. motitswe department of inclusive education, college of education, university of south africa, pretoria, south africa citation chauke, m., ledwaba, r.g. & motitswe, j m., 2025, ‘teaching deaf learners in multi-grade classes: perceptions from a rural mpumalanga special school’, african journal of disability 14(0), a1710. https://doi.org/10.4102/ajod.v14i0.1710 original research teaching deaf learners in multi-grade classes: perceptions from a rural mpumalanga special school margaret chauke, raesetja g. ledwaba, jacomina m. motitswe received: 03 mar. 2025; accepted: 20 aug. 2025; published: 24 oct. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: teaching deaf learners in multigrade classes contributes to learning challenges and requires implementation of curriculum differentiation. however, limited south african sign language (sasl) proficiency and learning resources hinder inclusive education in special schools. objectives: this study aimed to explore teachers’ perceptions in supporting deaf learners in multigrade classrooms, focusing on challenges and teaching strategies for inclusive education. method: a qualitative approach with a descriptive phenomenological design was used. six teachers from a special school were selected using purposive sampling. data collection involved focus group discussions, classroom observations, document analysis, and field notes. thematic analysis was employed to generate findings. results: teachers face persistent challenges, including inadequate resources, limited sasl proficiency, and insufficient professional development. to address these challenges, they employ multimodal teaching strategies, advocate for enhanced sasl training, and integrate visual aids to foster inclusive learning. conclusion: teachers used gestures, assistive technologies and visual aids in supporting deaf learners. the department of basic education should implement structured sasl training, expand access to assistive technologies, and develop an inclusive curriculum tailored to deaf learners’ needs. continuous professional development and systematic monitoring are essential for improving teacher effectiveness and promoting inclusive education. contribution: this study contributes to the understanding of teacher experiences in supporting deaf learners in multigrade classes, systemic barriers and adaptive strategies they employ to manage multigrade deaf education. furthermore, the findings of this study will inform future teacher training on the use of sasl and provide policy recommendations to improve curriculum differentiation. keywords: deaf learners; multi-grade classrooms; south african sign language; asset-based approach; curriculum differentiation; inclusive education. introduction special schools are central to the provision of education for learners with disabilities in south africa, particularly in rural areas where mainstream inclusive education practices often remain under-developed (donohue & bornman 2014; engelbrecht & green 2018). these schools serve as essential educational spaces for learners with diverse disabilities, including those who are deaf or hard of hearing. in rural provinces such as mpumalanga, the situation is further complicated by systemic issues, including low socio-economic background, teacher shortages and inadequate infrastructure (department of basic education [dbe] 2025; khoaeane & taylor 2016). one particularly under-researched aspect is how deaf learners are taught in multi-grade classrooms at special schools. multi-grade classrooms, common in rural communities, are necessitated by limited resources, fewer schools, staffing constraints and low enrolment numbers (kivunja & sims 2015; taole 2019). this model, established to support the millennium development goals (mdgs) and the education for all (efa) objectives, involves teaching learners of varying ages, grades and ability levels within a single classroom (kivunja & sims 2015; taole 2019). teaching deaf learners in multi-grade classrooms presents unique pedagogical and linguistic challenges, particularly in resource-constrained settings like south africa, where access to specialised schools and support services is limited (khalid, singh & chohan 2024). it demands a high level of adaptable and differentiated strategies, lesson planning complexity and individualised support (khalid et al. 2024; naparan & alinsug 2021). for teachers of deaf learners, these challenges are further compounded by barriers such as limited proficiency in south african sign language (sasl), a shortage of skilled interpreters, and scarce resources (moustache & makhoba 2024). addressing these needs is critical to fostering an inclusive learning environment, particularly in rural areas. in the rural context of mpumalanga, where there is only one special school for learners with severe to profound disabilities in a district, deaf learners from various grades are combined into a single class. this is largely because of the limited number of teachers proficient in sasl. this situation not only undermines the quality of education, but also contradicts the principles of equity and inclusivity embedded in south africa’s policy on screening, identification, assessment and support (sias) (dbe 2014) and the education white paper 6 on special needs education (ewp 6) (department of education [doe] 2001). the sias policy emphasises early identification and individualised support, yet the infrastructure and capacity to implement such provisions in rural areas remain severely lacking. research has shown that teachers in rural special schools often face challenges such as limited access to professional development in deaf education and sasl, a lack of interpreter services and inadequate technological support for visual learning (grace 2023; naparan & alinsug 2021). these factors collectively hinder the implementation of inclusive and equitable education for deaf learners. moreover, in multi-grade classrooms, the absence of grade-specific learning materials in sasl and the lack of clear policy guidelines further exacerbate the problem (hlalele 2012; moustache & makhoba 2024). in contrast, wilderman and nomdo (2007) argue that enhancing teacher support through ongoing professional development in sasl and the provision of visual aids could significantly improve inclusive education in these contexts. this article explores the lived experiences and perceptions of teachers at a special school in mpumalanga, examining their daily challenges and strategies for supporting deaf learners in multi-grade classrooms. by foregrounding teacher voices, the study aims to shed light on both the systemic barriers and the adaptive strategies employed to manage the demands of multi-grade deaf education in under-resourced environments. understanding these dynamics is essential for informing future teacher training, curriculum adaptation and differentiation and policy refinement to enhance the educational experiences of deaf learners in south africa’s special schools. defining ‘deafness’ and deafness in an inclusive education context deaf education and inclusive education are two interconnected, yet distinct paradigms that significantly shape the educational experiences of learners with hearing impairment. it is important to first provide a definition and distinction between deaf and deaf. deaf education has evolved over the past decades. it has shifted from a medical model, which focused on hearing loss and impairment, to a more culturally affirmative perspective that recognises deaf learners as part of the linguistic and cultural minority (kusters, de meulder & o’brien 2017; leigh, andrews & harris 2018). deaf learners are seen not merely as individuals with a disability, but as members of the deaf community, often with their own language, norms and identity (clark 2025; leigh et al. 2018). the distinction between deaf (lowercase ‘d’) and deaf (uppercase ‘d’) is central in this discourse. the term deaf generally refers to the audiological condition of hearing loss and is often associated with individuals who use assistive devices and spoken language, without necessarily identifying with the deaf community (inclusive education n.d.). in contrast, deaf denotes individuals who identify as part of a cultural and linguistic community that uses sign language such as sasl and shares a collective identity rooted in shared experiences and values (clark 2025; kusters et al. 2017). understanding these distinctions enables teachers to support learners more effectively by affirming their identities and communication preferences. whether a learner identifies as deaf or deaf can influence their participation, peer relationships and engagement in the classroom (leigh et al. 2018). acknowledging these differences fosters inclusive, respectful and empowering learning environments. for deaf learners, inclusive education remains contested. while the ewp 6 policy (doe 2001) promotes integration of learners with disabilities into mainstream schools, scholars argue that inclusion should not imply uniformity (donohue & bornman 2014; engelbrecht & muthukrishna 2019). instead, the unique linguistic and cultural needs of deaf learners require differentiated support systems such as the use of sasl, deaf education specialists, and deaf role models (storbeck 2018). definition of multi-grade classrooms multi-grade classrooms are educational settings in which a single teacher instructs learners from multiple grade levels simultaneously. these environments are particularly prevalent in rural or under-resourced areas where limited enrolment, staffing shortages or geographic isolation make single-grade classrooms impractical (kalender & erdem 2021; makoelle & malindi 2014). within the context of deaf education, multi-grade classrooms introduce specific pedagogical complexities. teachers must accommodate learners with differing academic levels and varied exposure to sasl, the primary mode of communication. as a result, teachers must implement scaffolded communication techniques and differentiated instruction to support meaningful engagement and learning (eds. phasha, mahlo & dei 2017). challenges of multi-grade classrooms for deaf learners teaching in multi-grade classrooms presents significant challenges, particularly when supporting deaf learners. the diversity of educational needs requires teachers to adapt content and delivery methods, often without the benefit of specialised training in visual communication strategies such as sasl, visual aids and written text (moustache & makhoba 2024). many south african teachers lack sufficient training in sasl, which impairs their ability to engage deaf learners effectively and provide individualised instruction (molapisi & phasha 2024). research indicates that deaf learners in multi-grade settings frequently encounter language barriers because of insufficient teacher preparedness and a scarcity of resources tailored to their communication needs. inadequate sasl proficiency among educators can limit comprehension and reduce learner participation (makoelle & malindi 2014). to address this, teachers must employ a broad range of multimodal and visually oriented teaching strategies. these include the use of captions, subtitles and structured visual scaffolding, which are essential for facilitating understanding and inclusion (wildeman & nomdo 2007; yoon & kim 2011). the asset-based approach in deaf education an asset-based approach provides a promising framework for enhancing inclusive practices in multi-grade classrooms. this perspective emphasises harnessing teachers’ and learners’ existing strengths, skills and community resources to overcome constraints (donald, lazarus & lolwana 2010). by focusing on what learners and teachers bring to the classroom rather than on their deficits, an asset-based approach fosters a sense of empowerment and adaptability among teachers. for teachers teaching deaf learners, this includes drawing on the visual learning strengths of deaf learners and incorporating community resources, such as local sasl experts, to support language acquisition and comprehension (ngobeni, maimane & rankhumise 2020). research shows that teachers who adopt an asset-based approach are more resilient and better equipped to address the challenges of multi-grade teaching (eloff, van der merwe & karsten 2024; makoelle & malindi 2014; mouton 2012). this approach encourages collaboration and resource-sharing in multi-grade classrooms, helping teachers use available tools to create more inclusive and effective learning environments. phasha et al. (2017) argue that, particularly in rural and under-resourced schools, community involvement and resource-sharing are essential to support teachers in meeting the diverse needs of deaf learners. multimodal teaching strategies multimodal teaching strategies are widely advocated as a solution for engaging deaf learners in multi-grade settings. these strategies include using visual aids, written instructions, gestures and peer-assisted learning, which accommodate the needs of learners with varying levels of understanding (grace 2023). research indicates that multimodal approaches enhance comprehension and increase engagement and motivation among deaf learners (francisco & padilla 2024; weber et al. 2024). molapisi and phasha (2024) found that integrating visual and gestural forms of communication alongside sasl can bridge communication gaps and support effective learning for deaf learners. policy and support for inclusive deaf education while south africa’s policy on sias aims to support inclusivity, it often fails to address the specific needs of deaf learners in multi-grade classrooms (dbe 2014). current policies lack provisions for the specialised training and resources that teachers need to support deaf learners effectively. wildeman and nomdo (2020) argue that policies must be tailored to address the unique needs of multi-grade and special education settings. studies recommend that professional development programmes include sasl training and equip teachers with multimodal teaching techniques to bridge the resource gap in special schools for deaf learners (moustache & makhoba 2024). policy reform that addresses the inclusion of deaf learners in multi-grade classrooms would involve funding for sasl training and providing visual aids and other teaching resources. targeted professional development and curriculum differentiation are crucial for empowering teachers and creating accessible educational environments for all learners, regardless of their abilities (phasha et al. 2017). without systemic support, teachers face significant barriers that impact their ability to deliver inclusive education to deaf learners, limiting the potential for equitable access to quality education. the literature highlights the pressing need for systemic support and targeted strategies to enhance inclusive education for deaf learners in multi-grade classrooms. effective implementation of multimodal teaching, professional development in sasl and tailored resources are essential steps to improve educational outcomes for deaf learners (mapepa & magano 2018). addressing these challenges will contribute to the broader goals of inclusive education, allowing deaf learners to thrive in resource-limited settings. educational stakeholders can foster more inclusive and supportive learning environments by supporting teachers in implementing multimodal teaching strategies to address the needs of deaf learners effectively (mpu & adu 2021). theoretical framework the current study employs an asset-based approach to examine teachers’ experiences in addressing the educational needs of deaf learners in multi-grade classrooms. originally introduced by kretzmann and mcknight (1993), this approach shifts the focus from deficits to strengths, emphasising the knowledge, skills and resources that teachers and learners bring to the classroom. in this framework, diversity is seen as a resource rather than a barrier, encouraging teachers to recognise and build upon learners’ inherent strengths and community resources. in multi-grade classrooms, where learners of varying abilities and ages learn together, the asset-based approach fosters resilience and adaptability among teachers (taole 2019). teachers rely on innovative, flexible strategies to support inclusive learning despite resource limitations (makoelle & malindi 2014). these strategies include multimodal teaching methods such as visual aids, captions, subtitles, gestures and interactive materials, which enhance accessibility and cater to the learning preferences of deaf learners (yoon & kim 2011). community collaboration is integral to this approach, particularly in under-resourced areas where local experts and parents can support teachers and learners, especially in sasl development (ngobeni et al. 2020). fluent sasl users within the community contribute to language acquisition, enriching the educational experience for deaf learners while strengthening school–community ties. the asset-based framework also acknowledges the unique abilities of deaf learners, such as enhanced visual-spatial skills, which can be leveraged through visually oriented teaching practices (moustache & makhoba 2024). by adapting instructional methods to harness these strengths, teachers create inclusive and personalised learning experiences that support all learners. teachers in resource-limited settings demonstrate adaptability, resilience and dedication, positioning themselves as valuable assets in inclusive education (engelbrecht & muthukrishna 2019; wabule 2020). many develop sasl proficiency to meet learners’ needs, embodying the commitment to inclusive teaching (weber et al. 2025). professional development plays a crucial role in enhancing teacher efficacy, particularly in sasl and multimodal teaching strategies. husum and waseem (2024) highlight how targeted training significantly improves teachers’ ability to support diverse learners, ensuring sustainable inclusion. furthermore, community engagement and resource-sharing reinforce the long-term success of inclusive education. collaborative networks, involving families, local organisations and peer teachers, create sustainable support systems that cater to diverse learner needs (phasha et al. 2017). these networks are particularly crucial in multi-grade classrooms, where individualised support varies widely. ultimately, the asset-based approach provides a holistic and empowering framework for inclusive education. by focusing on the strengths of both teachers and learners, it promotes collaboration, resilience and sustainable inclusion. this model not only addresses challenges but also harnesses existing classroom and community assets to foster educational success for all learners. rationale supporting learners who require additional assistance, such as those who are deaf, is essential to foster effective learning. the department of basic education (dbe 2014) emphasises the importance of facilitating the learning of deaf learners and recommending the use of sasl interpreters to assist classroom teachers lacking sasl proficiency. furthermore, trained teachers specialising in sasl must provide accessible and meaningful instruction. deaf learners in multi-grade classrooms face unique challenges, particularly in resource-constrained settings like south africa. in rural areas, such as the province of mpumalanga, teachers face severe resource limitations, lack specialised training and receive limited support in educating deaf learners. while policies like the sasl framework promote inclusive education in south africa, they fall short of addressing the unique needs of deaf learners in multi-grade settings (dbe 2014). many teachers have limited sasl training, and educational resources specifically tailored for deaf learners are scarce, particularly in rural areas (shawula 2023). these policy and resource gaps highlight the need for studies examining how teachers can receive better support to ensure quality education for deaf learners in multi-grade classrooms. this study is anchored in the asset-based approach, emphasising the strengths and resources teachers, learners and communities bring to the educational context. in contrast to deficit models that focus on limitations, the asset-based approach values adaptability, resilience and collaboration as key elements of inclusive education (husum & waseem 2024). by investigating how teachers harness available resources and skills to support deaf learners, the current study seeks to contribute a more complex understanding of effective, context-specific teaching strategies. this study is significant in several ways. it addresses the limited body of literature on the educational experiences of deaf learners in multi-grade classrooms in rural south africa, a setting often under-represented in educational research (suubi 2013). additionally, the study aims to provide evidence-based recommendations for the dbe to guide the development of inclusive policies and teacher-training programmes. by highlighting the importance of multimodal teaching strategies, sasl training and community involvement, this study offers practical insights for fostering inclusive learning environments that empower teachers of deaf learners. therefore, this study addresses a significant gap in the literature by exploring the specific educational needs and potential interventions for deaf learners in multi-grade classrooms, particularly within rural and resource-constrained contexts. while inclusive education policies have gained momentum across sub-saharan africa, the unique challenges faced by deaf learners in multi-grade classrooms remain under-examined (mapepa & magano 2018). adopting an asset-based approach, this study shifts the focus from deficits to the strengths, capacities and local knowledge embedded within rural communities and schools (kretzmann & mcknight 1993). through a comprehensive literature review, it identifies how community assets such as the skills of teachers, the resilience of learners and the support of local networks can be mobilised to create more inclusive and responsive learning environments. teachers are central to this inquiry, not merely as implementers of policy but as co-creators of contextually relevant solutions. their lived experiences and adaptive strategies offer valuable insights into how existing resources can be leveraged to support deaf learners in under-resourced settings (ndwandwe & joseph 2025). by integrating empirical evidence and teacher narratives, this study aims to inform teachers, policymakers and stakeholders on how to enhance educational practices, policies and support systems through a strengths-based, community-driven lens that aligns with the principles of asset-based development. in fulfilling these objectives, the study aims to contribute meaningful insights into the development of more inclusive, responsive and effective educational environments for deaf learners in multi-grade settings. by centring the voices of teachers and examining existing practices, this research seeks to inform future policy, teacher training and classroom strategies that promote equitable learning opportunities for all. guided by these inquiries, the study aimed to understand teachers’ perceptions of supporting deaf learners in multi-grade classrooms. it also identified and analysed the educational needs of deaf learners and investigated the use of multimodal teaching strategies. finally, the study explored how both challenges and existing support structures influence the inclusivity of multi-grade classrooms, as reflected in the lived experiences of the participating teachers. research design and methodology this study employed a qualitative research design grounded in the interpretive research paradigm, which posits that reality is constructed through social interactions and individual experiences (guba & lincoln 2005). this paradigm was particularly appropriate for investigating how teachers understand and implement support services for deaf learners in multi-grade rural classrooms. central to this design was the intention to privilege teacher voices, recognising them as knowledge holders whose experiences offer invaluable insights into the practices, barriers and innovations shaping inclusive education (babbie & mouton 2020; creswell & plano clark 2017). the interpretive lens was operationalised through a descriptive phenomenological approach, which allowed the research to explore the lived experiences of teachers working in a special school context in mpumalanga, south africa. phenomenology was suited to unearthing the structural features of experience by allowing participants to articulate challenges and strategies in their own words (khan 2014; smith, larkin & flowers 2021). research site and participants the research was conducted at a special school in mpumalanga province, south africa, which caters to deaf learners within multi-grade classrooms. the school is situated in a resource-constrained rural area, characterised by limited access to assistive technologies and a shortage of formally trained professionals in deaf education. participants were selected using non-probability convenience sampling and included teachers with experience in teaching deaf learners across multiple grade levels. their direct involvement in inclusive practices within these contexts ensured the relevance and richness of their contributions. the study sample consisted of six female teachers: one departmental head and five level-one teachers, including one who is deaf. the participants’ ages ranged from 30 years to 40 years, with an average age of 45 years. to maintain confidentiality, each participant was given a pseudonym, from teacher 1 to teacher 6. all participants held formal teaching qualifications, with the departmental head also possessing an honours degree in educational management. notably, four of the level-one teachers had completed advanced certificates in inclusive education (ace), while one held a postgraduate diploma in the same field (see table 1). this specialised training aligns with existing literature, suggesting that advanced qualifications in inclusive education enhance teachers’ abilities to implement multimodal teaching strategies tailored to the diverse needs of learners (makoelle 2021; uys & hugo 2022). such qualifications are crucial in fostering inclusive practices, enabling teachers to effectively address various learning needs. table 1: background information of participants. data collection data were gathered using focus group discussions (fgds), classroom observations and document analysis, enabling data triangulation and increasing the credibility of the findings (creswell 2014). focus group discussions focus group discussions served as the principal method for exploring teachers’ insights, allowing for dynamic discussions on shared experiences, instructional challenges and multimodal strategies. teachers provided detailed accounts of their efforts to adapt to deaf learners’ needs using tools like sasl, visual aids and peer scaffolding (moustache & makhoba 2024). follow-up questions encouraged clarification and deepened exploration, particularly around systemic challenges, learner engagement and support mechanisms. classroom observations classroom observations provided real-time insight into pedagogical practices and inclusive strategies used in multi-grade settings. these included teachers’ use of sasl, visual prompts and differentiated instruction to support learner comprehension. observations revealed how teachers navigated limitations such as insufficient resources, while also showcasing adaptive behaviours that maintained learner engagement and participation (moustache & makhoba 2024). document analysis a review of curriculum materials, institutional records and policy documents helped contextualise the teaching environment. this method identified resource gaps and illustrated how national education frameworks either supported or constrained inclusive teaching. the analysis highlighted the interplay between formal policy and actual practice, revealing inconsistencies in policy implementation and opportunities for reform (cardno 2018; dbe 2014). interview schedule the interview schedule guiding fgds was developed through initial consultations with teachers and a contextual needs analysis (mapepa & magano 2018). the schedule covered five key themes: rapport-building: exploring teachers’ backgrounds and motivations (ndwandwe & joseph 2025). educational needs and teaching strategies: identifying challenges and effective pedagogical responses (storbeck 2018). multimodal approaches: investigating the use of visual, gestural and digital aids (hauser et al. 2010). learner engagement: understanding strategies for fostering inclusion and peer interaction (humphries et al. 2013). systemic barriers and supports: examining institutional constraints and professional development opportunities (mapepa & magano 2018). this structure ensured data were collected in a focused, yet flexible manner, responsive to the nuances of teacher experience. data analysis data from fgds, observations and documents were subjected to thematic analysis, guided by the principles of qualitative coding and interpretive meaning-making (creswell & creswell 2022; ningi 2022). the analytical process was inductive, with patterns emerging organically through careful review and categorisation. transcripts and field notes were initially open-coded, and themes were developed through iterative cross-referencing and refinement. this ensured findings were grounded in participants’ lived realities, maintaining the phenomenological commitment to experience-centred knowledge (smith et al. 2021). ensuring scientific rigour: lincoln and guba’s trustworthiness framework the study adhered to lincoln and guba’s (1985) framework for establishing trustworthiness in qualitative research: credibility: achieved through triangulation across data sources, member-checking during fgds and prolonged engagement with the research site. transferability: enabled by rich contextual descriptions of the school environment, teacher demographics and observed practices. dependability: maintained through transparent documentation of methodological decisions, coding frameworks and audit trails. confirmability: supported by reflexive journaling and the use of external documents to substantiate participant perspectives. this framework ensured that the findings were not only methodologically sound but also analytically rigorous and ethically grounded. ethical considerations ethical clearance was obtained from the university of south africa research ethics committee on 11 may 2025 (ref: 2019/05/15/90255194/32mc). permission was also granted by the mpumalanga department of education and the school principal. the study adhered to ethical guidelines by ensuring the confidentiality of participants, obtaining informed consent, and protecting their well-being throughout the research process. participants were made aware of their right to withdraw from the study at any time. additionally, measures were taken to anonymise all identifying information in the reporting of the study (creswell & creswell 2022; mcmillan & schumacher 2014). supporting deaf learners using bilingual-bicultural and multimodal teaching strategies the school supports a diverse group of learners with various disabilities, including autism, deafness, learning disabilities, moderate to severe intellectual disabilities, multiple disabilities and severe disabilities. to meet these learners’ communication and learning needs, multimodal teaching strategies and specialised support, such as sasl, are crucial. research demonstrates that multimodal approaches incorporating visual, auditory and kinaesthetic elements enhance learning accessibility and engagement, especially for deaf learners who benefit from visual and hands-on support (matolo & rambuda 2022). including a deaf teacher, who also serves as a counsellor, adds significant value to the school’s bilingual-bicultural model of instruction. this approach enables learners to access academic content and cultural understanding through sasl, fostering cognitive and social inclusion. deaf teachers play a vital role in promoting language development, cultural identity and a sense of belonging among deaf learners, which is essential for their psychosocial well-being (smith et al. 2021). research highlights the importance of inclusive teaching practices and well-trained, diverse teaching staff in meeting the educational needs of deaf learners in special education settings (leigh & crowe 2020). results the findings of this study were derived from fgds, classroom observations and document analysis to highlight the distinct educational needs of deaf learners in multi-grade classrooms and the strategies teachers employ to address these needs. the following five key themes emerged from the data. theme 1: distinct educational needs of deaf learners in multi-grade classrooms participants highlighted the distinct educational needs of deaf learners in multi-grade classrooms, particularly in communication support and individualised instruction. these needs are assessed based on language acquisition challenges and comprehension levels, which differ significantly from those of hearing learners. teacher 1 noted that: ‘deaf learners struggle with language acquisition and comprehension, requiring tailored teaching strategies. the complexity increases in multi-grade classrooms, where learners have varying academic and developmental levels.’ (t1) teacher 2, who is deaf, stressed the ‘need for extra time and one-on-one support for complex topics, though limited resources in township special schools pose challenges’. teachers 3, 4, 5, and 6 highlighted the importance of multimodal teaching strategies, including individualised learning plans and enhanced visual aids, but emphasised the need for teacher training to implement these strategies effectively. theme 2: the utilisation of augmentative and alternative communication and south african sign language regarding the question, how are the augmentative and alternative communication (aac) methods, such as sasl and other visual and gestural languages, utilised to enhance learning and facilitate communication for deaf learners? teacher 2, a deaf school counsellor, mentioned that: ‘south african sign language (sasl) is essential for promoting communication, inclusion, and effective classroom participation. she further emphasised that sasl enables deaf learners to access the curriculum and engage meaningfully in learning activities.’ (t2) however, teachers 1, 3, 4, 5, and 6 reported a lack of proficiency in sasl, which poses communication barriers and hinders them from effectively teaching learners with hearing impairments. these participants expressed the need for professional development in sasl to enhance inclusive education practices. teacher 1 indicated that teachers should employ various aac methods, such as visual aids, written instructions and gestures, to support learning. teacher 1 further highlighted the importance of culturally responsive facilitators, including sasl-proficient interpreters, in fostering self-expression and confidence for deaf learners. teachers 4, 5, and 6 agreed that visual resources, like picture cards and illustrated storybooks, effectively support vocabulary and concept comprehension. theme 3: the use of multimodal teaching strategies to address the unique educational needs of deaf learners effectively, teachers 1 and 2 reported using diverse multimodal instructional strategies that integrate visual, kinaesthetic and interactive elements, which enhance comprehension and engagement by harnessing multiple sensory channels. they further emphasised that ‘visual aids, such as color-coded tasks and graphic organisers (e.g. story maps and character charts), enabled learners to navigate tasks, build literacy and narrative comprehension skills independently’. the study revealed that technology, including captioned videos and educational applications, provided accessible and interactive content tailored to diverse learning styles (cawthon & garberoglio 2017; marschark & knoors 2022). teachers 3, 4, 5, and 6 indicated that hands-on activities, such as using tangible objects in mathematics, facilitated understanding of abstract concepts and promoted direct engagement in multi-grade classrooms with diverse academic levels. teachers further indicated that they utilised peer-assisted learning, group work, gestures and written instructions to foster an inclusive and active learning environment, supporting cognitive development and inclusivity. theme 4: active engagement of deaf learners in classroom activities in response to the question of why deaf learners need to engage actively in classroom activities and how their participation is promoted, teacher 2, who is deaf and serves as a school counsellor, indicated that ‘active engagement is essential for deaf learners as it fosters meaningful participation, social interaction, and cognitive development in classroom activities’. teachers 3, 4, 5, and 6 emphasised the need for an inclusive environment that encourages active involvement through visual and interactive methods; this view was aligned with the research conducted by moustache and makhoba (2024). teachers 1 and 2 indicated that the ‘key strategies to promote participation included group discussions, hands-on activities, and peer support systems to build confidence and facilitate communication’. teachers 3, 4, 5, and 6 highlighted that the challenges, such as limited proficiency in sasl and communication barriers, often hindered engagement, particularly during group activities. to address this, teachers relied on the services of the school counsellor in group settings to bridge communication gaps, enhancing collaboration and reducing isolation, because the school does not have skilled sasl interpreters. theme 5: the need for professional development and institutional support the findings indicate that teachers in multi-grade classrooms with deaf learners require continuous professional development and stronger institutional backing to effectively implement inclusive teaching practices. teacher 4 mentioned that ‘ongoing professional development and institutional support are vital for enhancing inclusive teaching practices for deaf learners, especially in under-resourced classrooms’. teachers 3 and 5 also expressed concerns about limited access to essential resources such as learning aids and visual materials, which hinder their ability to meet learners’ diverse needs. they emphasised the importance of sustained training in sasl, multimodal teaching strategies and collaboration with specialists to address these gaps. all participants reported feeling underprepared because of limited training, highlighting the need for institutional initiatives that provide both capacity-building opportunities and the necessary teaching resources. institutional support through learning aids, policy guidance and access to inclusive education experts was viewed as crucial in enabling teachers to support deaf learners effectively, despite resource constraints. discussion this study explored teachers’ experiences in addressing the educational needs of deaf learners in multi-grade classrooms within a rural special school in mpumalanga, south africa. the findings reveal that deaf learners in these contexts face distinctive educational challenges, particularly related to language acquisition and comprehension, which differ significantly from those of their hearing peers and learners with other disabilities (molala & mokala 2025). these challenges are compounded by the multi-grade structure, which merges learners of varying ages, academic levels and developmental stages, requiring teachers to implement differentiated and inclusive teaching strategies (pmg 2025). a central issue identified was the critical role of communication in facilitating inclusive education. sasl, now officially recognised as the 12th national language, was viewed by participants as essential for enabling deaf learners to access the curriculum and engage meaningfully in classroom activities (free state department of education 2025). however, many teachers reported limited proficiency in sasl, which hindered effective communication and instruction. this gap also restricted learners’ social interaction and participation. in response, teachers employed a range of aac strategies, including visual aids, gestures, body language and written instructions, to bridge communication barriers (gómez-asencio et al. 2025; kuyler et al. 2025). despite these efforts, participants emphasised the urgent need for structured sasl training and access to sasl-proficient interpreters to support classroom learning (deafinition 2025). in the absence of sufficient sasl skills and formal resources, teachers turned to multimodal teaching strategies to support learner understanding and participation. these included visual, tactile and kinaesthetic elements such as captioned videos, graphic organisers and concrete materials for mathematics. such strategies were particularly effective in multi-grade settings, where learners’ academic abilities vary widely (deaf unity 2020; weber et al. 2024). teachers also promoted peer-assisted learning and collaborative group work to foster inclusive interactions. however, they noted that these methods require careful facilitation, especially when communication barriers limit peer engagement (molala & mokala 2025). active learner participation emerged as a cornerstone of inclusive education. teachers consistently emphasised the importance of involving deaf learners in classroom activities to promote cognitive development, self-confidence and social integration. hands-on learning and opportunities for interaction were found to increase motivation and reduce isolation (böhringer & storbeck 2025). yet, these efforts were often constrained by the lack of sasl interpreters and trained personnel to support communication during group tasks. in such cases, school counsellors played a vital role in bridging communication gaps, although their capacity was limited (isaacs et al. 2025). finally, the findings highlight the urgent need for professional development and institutional support to sustain inclusive education in under-resourced environments. teachers reported feeling inadequately prepared to meet the needs of deaf learners because of limited training, insufficient resources and the absence of specialist support. they identified continuous sasl training, exposure to inclusive pedagogies and access to assistive technologies and visual materials as priorities for improving teaching effectiveness (dbe 2025). institutional backing through policy implementation, collaboration with inclusive education experts and systematic resource allocation were deemed essential to strengthen teaching practices and ensure that deaf learners in multi-grade classrooms are not left behind (isaacs et al. 2025). combined, the findings of this study highlight the complexities of teaching deaf learners in multi-grade classrooms and the creative, though often constrained, strategies teachers adopt in response. while these teachers demonstrate resilience and innovation, their efforts must be supported through systemic interventions aimed at strengthening inclusive education frameworks, particularly in rural and special school contexts (isaacs et al. 2025; molala & mokala 2025). contributions of the study this study contributes valuable insights into the lived experiences of teachers supporting deaf learners in multi-grade classrooms within under-resourced rural special schools in south africa. by foregrounding teachers’ voices, the study deepens understanding of the contextual challenges that hinder inclusive education, specifically, inadequate sasl proficiency, limited access to teaching resources and the absence of professional development opportunities. it highlights the innovative use of multimodal strategies and aac methods as adaptive responses to these challenges. the study further adds to the discourse on inclusive education by promoting an asset-based approach, showing how teachers build on learners’ strengths despite systemic limitations. these findings provide an empirical foundation for shaping teacher training, resource allocation and policy interventions aimed at improving the quality of education for deaf learners in multi-grade classrooms. limitations of the study while the study offers important perspectives, it has several limitations. firstly, the research was conducted in a single special school in a rural area of mpumalanga, which may limit the generalisability of the findings to other contexts, such as urban or mainstream schools. secondly, the study relied on a small sample of teachers selected through non-probability convenience sampling, which may not fully capture the diversity of experiences across different regions or school types. thirdly, because of resource constraints, the study did not include perspectives from deaf learners or parents, which could have enriched the findings by incorporating a broader understanding of the educational experience. recommendations based on the findings, several recommendations are proposed to enhance inclusive education for deaf learners in multi-grade classrooms: structured sasl training: the dbe should implement mandatory and continuous sasl training programmes for all teachers working with deaf learners, with particular focus on rural and under-resourced schools. provision of teaching resources: schools must be equipped with visual learning materials, assistive technologies and aac tools to support differentiated instruction and multimodal learning. deployment of sasl-proficient personnel: efforts should be made to appoint qualified sasl interpreters or facilitators in schools to bridge communication gaps and promote active learner engagement. curriculum differentiation support: teachers should receive training in curriculum adaptation strategies that are suited to multi-grade and inclusive settings, enabling them to address varying learner needs effectively. collaboration with specialists: schools should facilitate partnerships with inclusive education specialists, speech and language therapists and counsellors to support the holistic development of deaf learners. policy monitoring and implementation: government and education stakeholders should strengthen monitoring systems to ensure that inclusive education policies are effectively implemented at the school level. conclusion this study highlighted the multifaceted challenges and adaptive practices involved in teaching deaf learners in multi-grade classrooms within a rural special school. teachers demonstrated commitment to inclusion using multimodal strategies, visual aids and aac methods despite limitations in sasl proficiency and access to resources. however, these efforts are not sustainable without systemic support. strengthening inclusive education requires investment in teacher development, communication support, curriculum adaptation and inclusive infrastructure. a coordinated, policy-driven response grounded in an asset-based framework is essential for ensuring that deaf learners are meaningfully included and supported in south african classrooms, particularly in rural and special school contexts. acknowledgements this study was conducted as part of the engage scholarship project, a community engagement project at the university of south africa. the research was supported by the department of education in the participating province. the authors sincerely appreciate the teachers from the special school for their time and valuable contributions to this project. they also extend their gratitude to the university of south africa’s community engagement unit for its financial support. competing interests the author reported that they received funding from the university of south africa, which may be affected by the research reported in the enclosed publication. the author has disclosed those interests fully and has implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on objectivity in research. authors’ contributions m.c. was responsible for the conceptualisation, drafting of the initial version, and the methodology section. r.g.l. contributed to data curation, writing, review, funding acquisition and project administration. j.m.m. was involved in the investigation, data curation, resource allocation and the refinement of the manuscript. funding information the authors express their sincere appreciation to the university of south africa, the community engagement unit, for providing financial support (project code: cn6700). data availability the data supporting the findings of this article are available from the authors upon request. however, access is restricted because of ethical considerations. disclaimer the views and opinions expressed in this article are those of the authors and are the product of 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provided the original work is properly cited. surviving spinal cord injury in low income countries in this original research... open access • abstract • introduction • research method and design    • review of literature    • qualitative research methods    • verbal autopsy    • study limitations • ethical consideration • results    • aetiology of spinal cord injury    • life expectancy after spinal cord injury    • problems causing premature death       • urinary tract infections       • pressure sores    • challenges of daily living       • losing your job and limited access to healthand rehabilitation services       • lack of access to wheelchairs and services       • pain and depression       • stigma and attitudes       • limited knowledge about sci amongst medical staff • discussion • conclusions • acknowledgments    • competing interests • references • footnotes abstract top ↑ background: mortality rates from injuries are higher for people from poorer economic backgrounds than those with higher incomes (according to the world health organization [who]), and health care professionals and organisations dealing with people with disabilities experience that individuals with spinal cord injury (sci) in low income countries face serious challenges in their daily lives.objectives: the aims of this study were to explore life expectancy (life expectancy is the average remaining years of life of an individual) and the situation of persons living with sci in low income settings. method: literature studies and qualitative methods were used. qualitative data was collected through semi-structured interviews with 23 informants from four study sites in zimbabwe representing persons with sci, their relatives and rehabilitation professionals. results: there are few publications available about life expectancy and the daily life of persons with sci in low income countries. those few publications identified and the study findings confirm that individuals with sci are experiencing a high occurrence of pressure sores and urinary tract infections leading to unnecessary suffering, often causing premature death. pain and depression are frequently reported and stigma and negative attitudes are experienced in society. lack of appropriate wheelchairs and services, limited knowledge about sci amongst health care staff, limited access to health care and rehabilitation services, loss of employment and lack of financial resources worsen the daily challenges. conclusion: the study indicates that life expectancy for individuals with sci in low income settings is shorter than for the average population and also with respect to individuals with sci in high income countries. poverty worsened the situation for individuals with sci, creating barriers that increase the risk of contracting harmful pressure sores and infections leading to premature death. further explorations on mortality and how individuals with sci and their families in low income settings are coping in their daily life are required to provide comprehensive evidences. introduction top ↑ globally 5.8 million people die each year from injuries (who 2010:2). injuries kill more people than hiv and aids and malaria combined, and road traffic accidents account for about a quarter of deaths from injuries (who 2010:2). however, many people survive their injuries, and have to live with a permanent disability, often a spinal cord injury (sci) (who 2010:6).more than 90% of deaths that result from injury occur in low and middle income countries, and mortality rates from injuries are higher for people from poorer economic backgrounds than those with a higher income (who 2010:10). sci varies in aetiology, and nations with similar economies tend to have similar features and incidence categories (ackery, tator & krassioukov 2004:1355). poorer people have an increased risk of injuries, and they are hardest hit by the financial pressure resulting from injuries (who 2010:10). the scope of the study is to highlight the situation of persons living with sci in low income countries, and to identify mechanisms facilitating survival and factors that might lead to death. the study addresses research topics that are derived from the gaps uncovered in the review of literature and from experiences in the field. four study sites in zimbabwe were selected representing urban and rural low income areas. the specific research objectives are to explore life expectancy and how individuals with sci cope in their daily life. it explores the daily challenges experienced by persons with sci and their families after returning home to their local communities. life expectancy for persons with sci from low income countries is expected to be lower than for persons with sci from high income countries. when interviewed on 19 september 2006, the executive director of the disabled women support organisation in zimbabwe, ms gladys charowa, illustrated the situation as follows: ‘we were 19 people being rehabilitated in 2001 and discharged in 2003. i am now the only person alive. the rest have died because of pressure sores. if someone can’t afford a wheelchair and is using a wheelbarrow and doesn’t have a cushion what do you expect?’ the living conditions studies amongst people with disabilities in the southern african region find that individuals with disabilities and their households are worse off on many important indicators of living conditions, and they often live without optimal technical, medical or social support that could improve their level of living condition considerably (eide et al. 2011). it is estimated that 80% of the world’s population of people with disabilities live in low income countries (who 2007:1), and as a consequence of poverty, many people with disabilities are likely to live with limited access to appropriate health care and rehabilitation services (who 2006; world bank 2001:152). research method and design top ↑ review of literature a limited literature review using pubmed was carried out, including the option of search for ‘related article’ and searching the publications’ reference lists. the search was limited to articles and abstracts published in english from 1992 to 2010. search terms used were, ‘spinal cord injury’ cross-indexed with ‘developing countries’, ‘low income countries’, ‘morbidity’, ’mortality’, ‘life expectancy’, ‘epidemiology’, ‘incidence’, ‘prevalence’ and ‘quality of life’. the identified articles were screened for relevance to this study. in addition the world bank and who’s websites were used to obtain demographic, economic and health statistics, especially from low income countries.the review of literature revealed numerous studies on life expectancy and epidemiology of sci from high income countries (burt 2004; devivo, krause & lammertse 1999; dryden et al. 2003; hagen et al. 2010; krause et al. 2008; lidal et al. 2007; o’connor 2005; soden et al. 2000; strauss et al. 2006; whiteneck et al. 1992; yeo et al. 1998). however, there were few epidemiological studies of life expectancy and sci in low income countries, except for studies from zimbabwe (levy et al. 1998), bangladesh (hoque, grangeon & reed 1999), nigeria (iwegbu 1983; nwadinigwe, iloabuchi & nwabude 2004) and sierra leone (gosselin & coppotelli 2005). a qualitative long-term follow-up research study from botswana (ingstad & whyte 2007) experienced that 12 out of 46 persons (26%) with disabilities had died within a life span of 16 years (1985/86 to 2002), and two men who became paraplegic after a mine accident, had died from infections. qualitative research methods a qualitative study highlighting the situation experienced by people with sci and their families in zimbabwe was conducted. qualitative research methods are used in the exploration of meanings of social phenomena as experienced by individuals themselves in their natural context (malterud 2001a). qualitative research involves systematic collection, organisation and interpretation of textual material derived from talks or observations (malterud 2001b). a heterogeneous group of 23 informants (i) were recruited from urban areas of bulawayo and harare and from rural areas of tsholotsho and binga in zimbabwe. data was collected through semi-structured interviews, and the informants were interviewed in their local environment. purposive sampling was used to ensure maximum variability of experiences and different aspects of living with a sci (domholdt 2005). representatives from disabled peoples’ organisations and rehabilitation professionals from local hospitals assisted the researcher to identify and interview the individual informants in the local communities. the study sample informants included persons with sci (11), families having had one family member with sci passing away (5), representatives from organisations of people with sci (2) and rehabilitation professionals (5) from the governmental health care system (two rehabilitation technicians, one nurse and two occupational therapists). three interview guides were designed, one for persons with sci, one for relatives of persons with sci who had passed away and one for rehabilitation professionals. all interview guides had open-ended questions describing the main topics and themes. verbal autopsy verbal autopsy is a method for identifying the cause of death based on interviews with relatives or other caregivers, and is often the only way to establish the causes of death in areas where civil registration and death certification systems are weak (setel et al. 2006:693). for this study we applied elements from verbal autopsy for identifying causes of death and factors facilitating the survival of persons with sci. standard validated verbal autopsy questionnaires were modified for the interview guide for semi-structured interviews of relatives and caregivers of persons with sci who had passed away.data collected from interviews, observations during interviews and field notes were transcribed into written text. the data was coded into given categories in a hierarchic or tree structure. being an iterative process data analysis started together with the data collection. when analysing data the important cultural and contextual differences and the perception of disability (ingstad & whyte 2007) that might be defined and understood differently in different settings were kept in mind. study limitations the findings presented are limited to the 23 informants from four study settings in one low income country: the literature however confirms similar findings from other low income countries (gosselin & coppotelli 2005; hoque et al. 1999; iwegbu 1983; levy et al. 1998; nwadinigwe et al. 2004). the findings could serve as a basis for a larger research study covering more countries, and it would add value if comparative studies could be undertaken in similar african countries. this was not possible within the scope of this study. data was coded and analysed by the author, and greater rigour might have been achieved if the data was coded and analysed by more than one researcher. ethical consideration top ↑ permission to conduct the study was granted by the ministry of health and child welfare, zimbabwe. participation in the study was voluntary, and the informants were at liberty to withdraw from the interview at any time. all informants were informed about the objectives of the study, and informed consent was signed prior to the interviews. participating in the study did not adversely influence the informants’ access to health care or wheelchair services. data gathered was treated confidentially. all names used in this article are fictitious in order to protect the informants’1 identity. results top ↑ aetiology of spinal cord injury the recent global estimate of traumatic sci incidence2 ranges between 10.4 and 83 cases per million inhabitants per year (wyndaele & wyndaele 2006:525), and the prevalence3 of sci ranges between 223 and 755 cases per million inhabitants (wyndaele & wyndaele 2006:525).sci is caused by damage to the spinal cord that carries sensation and motor signals to and from the brain, and affects sensation and voluntary movement below the level of the injury (lin et al. 2003). the loss of function depends on the severity of injury and the impact on the spinal cord. functions that might be affected are bladder and bowel control, pain, spasm, sexual function, blood pressure, heart rate, digestion, temperature control, sweating and other autonomic functions (lin et al. 2003). traumatic sci might result from road traffic accidents, falls, violence, sporting accidents, war injuries and work related accidents. non-traumatic sci can occur from tumours, spinal tuberculosis, ischaemia, development disorders like spina bifida and other neuro-degenerative diseases (lin et al. 2003). sci varies in aetiology, male-to-female ratio, age distribution and complications with reference to country and region, depending on economic, social and cultural factors (ackery et al. 2004:1355). nations with similar economies tend to have similar features and incidences in these categories (ackery et al. 2004:1355). men are universally more likely to be injured than females and the incidence rates for males are consistently higher than for females for all age groups (dryden et al. 2003:113). in zimbabwe the male-female ratio was 8.1:1 (levy et al. 1998:216) and in bangladesh 7.5:1 (hoque et al. 1999:859), whilst in high income countries the gender distribution was about 3.8:1 (wyndaele & wyndaele 2006:523). the reason for this might be that in low income countries the females are more often at home taking care of the family, whilst men are performing the risk-taking activities outside home and being more exposed to hazardous working environments and violent behaviour. the trend in high income countries indicates that women are slowly catching up (wyndaele & wyndaele 2006:527), whilst in low income settings men are still at a significant higher risk than women. globally, road traffic accidents involving motor vehicles, bicycles or pedestrians, accounted for about half of all scis, predominantly amongst young adults. road traffic accidents accounted for 56% of all scis in zimbabwe (levy et al. 1998:216), 58% in nigeria (nwadinigwe et al. 2004), 42% in brazil (da paz et al. 1992:636), 25% in south africa (hart & williams 1994:709), and 18% in bangladesh (hoque et al. 1999:860). scis were most frequent in young adults between the ages of 16 to 30 years (54%) (devivo et al. 1999:1412), and 42% of persons with sci were under 25 years of age at the time of the injury (whiteneck et al. 1992:619). alcohol and substance abuse is a potential risk factor for sci. falls accounted for 63% of scis in bangladesh and were split into two major causes: falling from a height, such as a tree (43%), and falling whilst carrying heavy loads on the head (20%) (hoque et al. 1999:860). sci caused by falling from a tree, which is experienced in many low income countries, can be explained by the agriculturally based economy, as adults and children climb trees to harvest fruits and to chop off tree branches for fire.figures from south africa indicated a high incidence of sci from violence (56%), particularly gunshot injuries (36%) and stab wounds (20%) (hart & williams 1994:709). this might be explained by socio-political changes and the general violence in the country (hart & williams 1994:709). in brazil violence was the second leading cause accounting for 27% of scis (da paz et al. 1992:636). sci from violence has been increasing in countries where violence is rife. life expectancy after spinal cord injury before world war ii people rarely survived for extended periods after a sci (krause, devivo & jackson 2004:1764). since then life expectancy has improved considerably and over the last three decades there has been a 40% decline in mortality during the critical first 2 years after injury in high income counties (strauss et al. 2006:1079). in zimbabwe, during the 1960s, approximately 90% of people with sci in zimbabwe died within one year of discharge from hospital (levy et al. 1998:213). during the period 1988–1994, mortality as a result of sci dropped and half of sci patients who went through the national rehabilitation centre (nrc) in ruwa, zimbabwe, were surviving beyond one year (levy et al. 1998:217). a high incidence of secondary complications resulted in a high mortality rate in hospitals.several studies on sci indicate that higher neurological levels of injury, more severe degrees of completeness and higher ages at injury are increasing the risk of mortality (devivo et al. 1999:7416; krause et al. 2004:1764; krause et al. 2008:1482; lidal et al. 2007:145; whiteneck et al. 1992:617). in zimbabwe two-thirds of those who died within one year after the injury were tetraplegics and one-third paraplegics (levy et al. 1998:216). the chances of dying are highest in the first year after injury, particularly for severely injured persons. ventilator dependency was the strongest predictor of mortality in the first year, and persons with tetraplegia had the highest rate of death from respiratory and digestive failure as well as from septicaemia. we were not able to identify any ventilator dependent informants for this study, and it is suggested that few ventilator dependent persons survived during the economic crises in zimbabwe. problems causing premature death until the 1990s renal failure and other urinary tract complications were reported to be the leading cause of death amongst persons with sci in high income settings (devivo et al. 1999:1411; krause et al. 2008:1483; whiteneck et al. 1992:622). significant advances in urologic management and prevention and treatment of pressure sores resulted in changes in the leading causes of death. a number of studies from high income countries over the past decades have revealed that pneumonia and other respiratory complications are now becoming the leading causes of death amongst people with sci followed by septicaemia, urinary tract diseases, heart diseases and suicide (devivo et al. 1999:1411; soden et al. 2000:607). other studies also confirm this converging trend towards the situation in the general population of the leading causes of death being cardiovascular diseases and respiratory complications (hagen et al. 2010:370; lidal et al. 2007:145). in low income countries infections and septicaemia caused by urinary tract complications and pressure sores are still the leading cause of death for people with sci (gosselin & coppotelli 2005:331; hoque et al. 1999:859; iwegbu 1983:83; levy et al. 1998:213; nwadinigwe et al. 2004:214). in zimbabwe 7% of individuals with sci died from septicaemia as a result of pressure sores whilst being hospitalised (levy et al. 1998:214). high rates of pressure sores (33%) and pain (77%) after returning home were also documented (levy et al. 1998:216-217). pressure sores and resulting infections were experienced to be the major causes of death amongst persons with sci in zimbabwe.in high income countries suicide rates are higher amongst persons with sci than in the general population (devivo et al. 1999:1411; soden et al. 2000:609), but similar findings could not be confirmed in this study or other studies from zimbabwe (levy et al. 1998:216). it might be that suicide is under-reported, and more careful exploration is needed. urinary tract infections paralysis from sci can affect bladder and bowel functions depending on the extent of the injury. bladder and bowel incontinence is a challenge for many people with sci. catheterisation increases the risk of infections if not carried out in a hygienic and safe environment. many of the homes, in both urban and rural settings, do not have access to clean water or proper sanitation and this might easily cause infections. lack of access to catheters and urinary bags increases the chances of having urinary tract infections. stephen, a young man, stated: ‘i [can] hardly afford to buy urine bags and catheter[s] and they are hardly available now’ (i8, person with sci, male). at r1.00 per day, disposable catheters are not costly: however for people living below the poverty line, it is money they do not have. others used napkins and said: ‘if you have got a pressure sore and are using napkins that is ... deadly’ (i1, person with sci, female).education and training in how to do catheterisation is of major importance but unfortunately it is not available to all patients. peter who had received training in south africa explained: ‘i do disinfection of the catheter and urine bags every day, and i take out the catheter every day. this is very easy if you know how to do this. i also use some gel when inserting the catheter. i use sodium hypercloride for disinfection and i buy this at the pharmacy. you need to be educated about the catheterization. i was educated by the doctors in south africa. but many doctors and nurses here are not trained.’ (i12, person with sci, male) many of the informants and their families reported that they had not received adequate training for bladder and bowel management, which is probably a consequence of medical staff not being specially trained in caring for sci patients. pressure sores pressure sores and ulcers, also called bed sores and decubitus ulcers, might easily occur when sitting or lying in the same position over time: for example lying in bed or sitting in an inappropriate wheelchair. it may, however, take just a few hours to get the first sign of pressure sores, and if not handled properly it might develop quickly. many of the informants experienced pressure sores. these could take months to heal often causing infections and in worst cases death. family members reported that the cause of death for three out of five individuals who passed away was from pressure sores, and one had pressure sores as a contributing factor. rehabilitation professionals reported that infected pressure sores and urinary tract infections were causing major health problems amongst people with sci, and are possibly still the leading cause of death. in nigeria pressure sores were reported to be the most common complication (nwadinigwe et al. 2004:161).an older lady living in her rural home together with her family was paralysed in both legs after a fall. the family tried their best to take care of her, but because of the difficult economic situation and lack of access to health services and wheelchairs, it was difficult for her to recover after the injury. her relatives explained: ‘mama was given a wheelchair from hospital for a few days, but they needed it back when she could not pay for it. when she came home from hospital she developed pressure sores after one month, caused by staying in bed most of the time. she had sores all over, both at the side of the hips and inside the legs. at the end maggots were coming out of the wounds. mama passed away in her home four months after she got the pressure sores.’ (i14, relative, female) sam became paraplegic at the age of 16 after having a spinal tumour removed. he used to live with his mother in a poor township. his mother stated: ‘after discharge, he was given a self-propelling wheelchair which had a plastic seat and this resulted in him having pressure sores on his back as soon as he settled back home. he was admitted to the hospital and the nurses would refuse to dress his wounds because they were so infected and he would pass urine as well as faeces without realizing it in bed. by then he had very bad pressure sores and a swollen left leg. he now needed everything done for him and after three days he died in the night and the family was told the following morning during visiting time.’ (i19, relative, female) emmanuel, who is living in an urban area with his wife and little son, stated: ‘i contracted pressure sores at hospital, and i spent six month in bed because of pressure sores. i got treatment for the pressure sores at the rehab centre. the medical doctors said i had a 50/50 chance to survive. but i made it and the pressure sores healed. i spent almost one year and three months at rehabilitation.’ (i7, person with sci, male) pressure sores were reported to be a devastating complication, and a history of pressure sores was reported by many of the informants. pressure sores might be contracted both at hospital and at home and are often caused by lack of turning and pressure relief routines and limited access to appropriate seating services and wheelchairs. combined with limited access to health care services, poor hygienic conditions and a warm climate, pressure sores are a source of great suffering for people with sci. challenges of daily living most of the informants described the return home to the community as very difficult. one of the rehabilitation professionals summarised the situation:‘when you are discharged from hospital and you are going home – going home to what? often people with sci do not have a wheelchair and the home conditions are not always conducive. the kinds of “bushtoilets” in rural area are not suitable for sci, and sometimes you might not even have a bed. a person might be discharged from hospital to go home and die.’ (p17, rehabilitation professional, female) losing your job and limited access to healthand rehabilitation services out of 16 informants with sci, 15 reported that they went home to their families after being discharged from hospital or rehabilitation. limited income as a result of unemployment and, therefore, a lack of financial means to purchase devices such as wheelchairs, calipers, urinary bags and catheters, and limited access to transport and to health and rehabilitation services are some of the challenges restricting daily activities and social participation of people with sci.unemployment is generally high in zimbabwe, and informants reported that after their injuries they either lost their job or found it impossible to continue their work. loss of employment meant loss of income which often had dramatic consequences for the households involved. young people with sci also reported that they had to leave university because of lack of access to school buildings and of accessible and affordable transport. hannah used to be the breadwinner of her family. they live in traditional houses about two to three kilometres from the main road in a rural setting. she cared for her mother and father, both blind, her son, her sister, her sister’s daughter and some young brothers. by the age of 25 she sustained a sci from a road traffic accident and her legs were paralysed. absence of income affected all the family members and her son had difficulties in attending school because of lack of money for school fees and uniforms. hannah said: before the injury i was going to zambia and getting things and selling them. i was also selling chickens and i used to be the breadwinner of the family. now it is difficult to move around and carry things. last year i nearly died from hunger. it is very difficult, because i cannot work like i did any longer. even the cost of one dollar a term for school fees for my son, is challenging to pay. (i6, person with sci, female) the consequences of sci were also dramatic for emmanuel and his family. emmanuel is living in an urban area with his wife and little son. he had a good job in a nationwide company and his own company car. after the accident he lost his job and the car. emmanuel and his family had no regular income as a consequence of the injury. he was insured by his company, but the insurance was exhausted after rehabilitation. as a result of his sci, emmanuel and his family had no income, and although they lived in an urban area, close to health care facilities and rehabilitation services, they were not able to access the services because of loss of income and no accessible public transport. he explained: ‘i can’t afford to go the physio, because we do not have a car any longer and i can’t use public transport. my wife is doing the daily work in the house, taking care of our boy and assisting me. i need some drugs and vitamins, but i can’t afford to buy this. i can’t afford to do testing of urine in order to detect infections.’ (i7, person with sci, male) persons living in rural areas had even greater challenges accessing rehabilitation services because of economic difficulties and transport problems. one of the rehabilitation professionals tried to paint the difficulties of accessing rehabilitation services: ‘imagine yourself, if you are living in rural area and you are told to go to ruwa (the nrc) next to harare for rehabilitation. you don’t have money, you don’t have transport to harare and sometimes you don’t even have a wheelchair for personal mobility, how could you possibly find your way to ruwa?’ (i11, rehabilitation professional, female) all informants except for one man, reported that they had serious economic challenges after their injury, affecting the standard of living for their families and also making it difficult to access health services. none of the informants received financial support from the government. lack of access to wheelchairs and services it has been documented that only 18% – 36% of people with disabilities in southern africa have access to assistive devices and services (eide et al. 2011). levy et al. (1998:215) summed it up when he said: ‘the wheelchair problem has haunted us for a very long time.’ limited access to appropriate wheelchairs and services was also reported by many of the participants. all informants, except one elderly lady, had some kind of wheelchair or mobility device, but many of the wheelchairs were not properly adapted to either the individual user or the home environment.limited financial resources and lack of priorities have caused many low income countries to distribute wheelchairs through charity organisations and donations from abroad. most of these wheelchairs have been designed to be used inside institutions or on even ground and are often not adapted to fit the environment or the individual user. the wheelchairs might only be available in one or a few sizes. nena had sustained her sci 15 years ago during a road accident and needed a wheelchair for both urban and rural areas. she highlighted the lack of appropriate wheelchairs adapted to the local environment: ‘in other countries there are different wheelchairs for sci and lighter wheelchairs. here in zimbabwe we have to use any wheelchair’ (i1, person with sci, female). there is a huge need for a range of wheelchairs for various conditions. nena explained that the rigid 3-wheeler wheelchair model was suitable for rural areas, but it was very difficult for her to use when travelling. the traditional foldable 4-wheeler was best suited for indoor use, for flat surfaces and for travelling, but it was too heavy for her to move in sandy areas, on dirt roads, up hills and around obstacles. many of the informants in rural areas found it very difficult and sometimes impossible to push themselves from home to the main road or to attend social events or visit friends. fatuma, living in the rural area, explained that her first wheelchair from the local rehabilitation workshop (lorewo) in bulawayo was strong and light and easy to use, but the donated orthopaedic style that she was currently using was very heavy and the small front castor wheels get stuck in the sand. she used to go to church once a week, but now with the donated wheelchair she found it almost impossible to push herself: ‘i can push myself, but now i have problems in the sand’ (i5, person with sci, female). nena added: ‘the donated wheelchairs look shiny, but they often break down after a short time and they are difficult to repair’ (i1, person with sci, female). it was observed that wheelchairs with even minor problems were not repaired because of a lack of spare parts and tools. also, there was limited knowledge amongst users and professional rehabilitation staff on how to repair wheelchairs. during field work we experienced that wheelchairs had been donated without proper services and often not adapted to fit the individual user. sam developed pressure sores that became infected and caused his death because of the wheelchair with plastic seating. an inappropriate wheelchair increases the risk of secondary complications like pressure sores, shoulder injuries or spinal deformities. pain and depression pain was a prominent factor in the lives of many sci patients regardless of their level of injury and 77% of individuals with sci complained about pain (levy et al. 1998:217). high prevalence of chronic pain after sci is also reported in high income countries, is likely to affect the quality of life, and may cause depression (ravenscroft, ahmed & burnside 2000:611).findings from this study confirm that pain and depression are frequent. pain is often permanent and one has to find a way of dealing with it and the dizziness. matt, living with tetraplegia in an urban area elaborated as follows: ‘the pain never left me. this pain is different from anything else. [i]t is rootpain and pain in legs, numbness and burning as part of post traumatic. it is always worst in the evenings when it is cold. ordinary pain killers like voltaren do not work. morphine like drugs does help, but they are not available and they are addictive. anti-elliptic drugs are helpful. but from the sunset up to the night i have pain and burning. pain is there.’ (i9, person with sci, male) other major problems reported by individuals with sci in zimbabwe are boredom and lack of purpose (levy et al. 1998:217). many see themselves as totally useless and non-contributive, and unfortunately many of their families share this perception (levy et al. 1998:214). a feeling of usefulness is important and one male informant with a severe sci described his situation a year after the injury, where he also lost his wife, as follows: ‘i felt i was a hopeless mass of bone and flesh. i was supporting my children and talking to them, and then it was the first ray of light. i felt that a father in a wheelchair is better than no father. i would be alive for them (my children), this gave me the reason to live.’ (i9, person with sci, male) samson, a paraplegic after a road traffic accident, was staying with his grandmother and grandfather. because of his sci he was not able to continue his education. he used to sit at home listening to music and commented: ‘what more can i do?’ (i8, person with sci, male). samson was bored at home and experienced that it was very difficult for him to contribute and become an active member of society. he emphasised the importance of meeting other people with disabilities and be inspired. stigma and attitudes many of the informants had experienced stigma or negative attitude from family members and society after their sci. peter is living in a rural area and was injured many years ago during a road traffic accident. he stated that:‘stigma is there, in the society, within family and in yourself. in order to handle stigma and negative attitudes, you have to accept your disability first and then you will be able to face society and fight stigma within family and society. stigma is due to ignorance and lack of knowledge.’ (i 12, person with sci, male). a rehabilitation professional also referred to stigma: ‘stigma is mostly within society. in earlier days a person with disabilities was just seen as a half person’ (i11, rehabilitation professional, female). nena confirms peter’s negative experiences about attitudes towards people with sci and also expresses her feelings of being useless after the injury. she described the traditional african culture: ‘being an african woman is a lot of responsibilities. many might think that you are not worth anything because you might not be able to carry out all the expected duties. if you fail to get counseling, you might just be staying at home. the attitude towards me changed after the injury. even my husband did not like me to go out, and he used to get me things instead. also the children said that they would not want me to go with them to school, because they would be embarrassed by the other children.’ (i1, person with sci, female) luckily nena received counselling and was trained. after some years she was able to accept her situation and could inform and train her family. she personally experienced how attitudes from people around her changed from negative to positive as her confidence and abilities grew. many informants experienced a change in attitude in others when they were able to demonstrate their value, and when those around them learned more about sci. the need for counselling and family support was emphasised by the informants. limited knowledge about sci amongst medical staff lack of knowledge about sci by health care staff at both urban and rural clinics and at central hospitals was experienced. andrew who was injured during a sporting accident, complained on behalf of his friends with sci:‘those who passed away, some of the cases i have to blame the nurses, because they are not doing their work, teaching the patients about pressure sores and handling of the bladder and bowel’ (i3, person with sci, male) nena expressed her dissatisfaction with the care provided by hospital staff as follows: ‘i contracted pressure sores on my buttock and on my heels at hospital because of lack of turning. you might die in hospital because of pressure sores. get out of hospital as early as possible. the pressure sores healed when i came home, because my sister and my husband dressed the sores three times a day. at hospital they do not do dressing three times a day.’ (i1, person with sci, female) matt described his experiences like this: ‘mr scan showed that it was a lot of damage to the spine, c5/c7. i developed bronchia pneumonia and septicaemia. these are common complications. i had breathing problems, so breathing was a challenge. bed sores happened in the sacral, and i had to spend one month at hospital in harare. i lost tremendous weight. i am sure if it was a spinal unit here in zimbabwe, i could have been much better. then i was transferred to pretoria with a proper spinal unit. there i could see a great difference in nursing care. they know how to look after bed sores. i got plastic surgery and started with physiotherapy.’ (i9, person with sci, male) many of the informants are requesting adequate training of health care and rehabilitation professionals that would ensure better care for persons with sci and furthermore improve their conditions. discussion top ↑ life expectancy for persons with sci in high income countries has increased because of enhancements in medicine, prevention and treatment, including early acute management and long-term rehabilitation (devivo et al. 1999:1411; krause et al. 2004:1764; strauss et al. 2006:1079). although the survival rate has improved also for individuals with sci in low income countries, the mortality rate is still high and life expectancy is significantly lower than amongst the general population (levy et al. 1998:213). a rehabilitation professional summed up her experiences: ‘generally the poor ones die off due to lack of resources and health care. this seems to be the trend’ (i22, rehabilitation professional, female).for high income countries significant improvements in the management of urologic issues and the prevention and treatment of pressure sores have shifted the leading causes of death to heart and cardiovascular diseases and respiratory complications. this shift in leading causes of death was not identified for low income countries, and in zimbabwe septicaemia because of urinary tract infections and pressure sores and pneumonia had the greatest impact on life expectancy (levy et al. 1998:214). the findings from this study also revealed that urinary tract infections and infectious pressure sores are frequently causing major health problems amongst people with sci, possibly still being the leading cause of death. a high prevalence of pressure sores and pain after returning home was documented along with the need for wheelchairs (levy et al. 1998:216-217). sam died from infectious pressure sores caused by using an inappropriate wheelchair with plastic seating. mama did not have a wheelchair and died from infectious pressure sores caused by lying in bed. their problems might have been prevented if they had received appropriate wheelchairs and services. by constant turning and proper care, pressure sores could have been prevented or treated. costly actions might not be necessary, just adequate training of carers, whether they are staff or family members, and ensuring the right knowledge and attitudes. levy stated with reference to prevention and treatment of pressure sores that: an enormous amount of money and time is spent trying to heal what is preventable. a ‘turning team’ whose job would be to go around any hospital turning all inert patients, would be of enormous benefit and save lives and money. (levy et al. 1998:214) if sam and mama had received proper care and rehabilitation services including appropriate wheelchairs, this could have facilitated survival instead of contributing to mortality. access to financial support, health careand rehabilitation services and appropriate wheelchairs might be alleviating factors improving the situation. the situation for people with sci in zimbabwe was reported to have become worse because of the country’s economic decline. collection of data for this study was conducted in 2009 during a time of economic recession in zimbabwe and the near collapse of the health care system. this period of hyperinflation and economic breakdown presented most informants with sci and their families with major challenges. they reported having no financial support, there were hardly any medical or technical services available, and many were not able to access rehabilitation services. it was illustrated that if you lived in a rural area, it might take days of travelling to get to the nrc: and how could you possibly get there without money and accessible transport? generally persons with sci were struggling to cope both at hospital and when returning to their communities. they reported that access to health careand rehabilitation services was difficult, and mortality rate was high, possibly higher than in the 1980s. harry stated: ‘poverty is the main problem’ (i4, person with sci, male), and others echoed that poverty was the major challenge. furthermore, hannah explained how her family was struggling to survive because of hunger after her injury. findings from this study confirm that poverty might accelerate the severity of disability after sci. stephen could not afford to purchase disposal catheters and urinary bags, and others did not have the resources to access rehabilitation services. as a consequence many contracted painful urinary tract infections and devastating pressure sores, which increased their disability and reduced their quality of life. pressure sores were also contributing to premature death for four out of five individuals. environmental barriers like limited access to mobility increased the daily challenges for people with sci and hindered their access to services and participation in society. the situation for persons with sci in zimbabwe was difficult and access to services, technical devices and social support was limited as a result of the economic recession and poverty in the country. the findings indicate that structural poverty in society might lead to a higher mortality rate because of limited access to adequate acute medical care and long-term rehabilitation services. furthermore, poverty was experienced to have an even greater impact on persons with sci and their families, as a result of the daily challenges presented by the low standard of living. literature confirms that there is a link between poverty and disability, and being poor increases the likelihood of contracting secondary complications (elwan 1999; grut & ingstad 2005; yeo & moore 2003). pain, boredom and depression were reported to have a major impact on the quality of life of people with sci, both from the literature (levy et al. 1998:217; ravenscroft et al. 2000:611) and from this study. matt stated, ‘[n]ot being able to walk is the least [of my] problems’ (i9, person with sci, male), referring to the additional challenges like incontinence, infections, pressure sores, pain, the feeling of being useless, depression and stigma. many informants reported developing mental stress and depression after the initial recovery phase and when returning home. counselling by either professionals or peer groups and support from family were experienced to be factors contributing to increased self-esteem, mental health and participation. many highlighted ‘‘[m]eeting others in the same situation, being inspired and have someone to talk to is important’ (i1, person with sci, female), and the ‘[c]ounselling aspect is important, and the whole family needs to be involved’ (i2, person with sci, male). peer group training is relatively inexpensive and might be successfully implemented in low income areas. exposing the society to people with sci and demonstrate their ability was also experienced to reduce stigma and facilitate participation: ‘make people feel useful’ (i9, person with sci, male). the findings indicate that structural poverty in a society worsens the situation for people with sci by creating barriers, thereby increasing the risk of contracting harmful infections and pressure sores, and increasing mortality. the majority of the informants had a limited income because of losing their jobs and not receiving any financial support. they also experienced a lack of appropriate wheelchairs and affordable medical devices (catheter, urinary bags, etc.), limited access to public transport and education, limited social participation, mental stress and negative attitudes and stigma from family and society. these are all contributing factors reducing the quality of life and contributing to the mortality of people with sci. affordability and accessibility of services and devices, less prejudice and increased social participation might help facilitating survival of individuals with sci. a major challenge identified is a lack of income or financial resources supporting the individuals with sci and their families. levy (1998) described the challenges: unless we develop a very good financial and family support system and a strong personal drive we know we are virtually condemning that patient to death when we discharge them to out-patient care (p. 217). his comments are still valid, reflecting the situation for many people with sci in low income settings. conclusions top ↑ the study indicates that life expectancy for individuals with sci in less resourced settings is shorter than for the average population and also for persons with sci in high income countries. septicaemia as a result of urinary tract infections and pressure sores was still the leading cause of death and had the greatest impact on life expectancy and daily life amongst individuals with sci. the findings confirm that individuals with sci and their families in low income settings are facing major challenges in their daily life, because of limited financial, medical, social and technical support. poverty has an even greater impact on people with sci in low income countries, because of the daily challenges presented by the low standard of living. poverty itself is contributing to individual suffering and a high mortality rate by limiting access to rehabilitation services including appropriate wheelchairs and medical treatment for complications like infections, pressure sores and respiratory problems, common to people with sci.epidemiological studies of sci in low income countries have not been identified (wyndaele & wyndaele 2006:252), and further explorations on mortality and how people with sci and their families in low income settings are coping in their daily life are required to provide comprehensive evidences. acknowledgments top ↑ thanks to all the informants with sci and their families, the lorewo team in zimbabwe and the professional health care staff who contributed and shared their time and knowledge with the researcher. special thanks to my supervisor professor benedicte ingstad, university of oslo, norway, for her major support and professional guidance during the writing of my master thesis in international community health. competing interests the author declares that she has no financial or personal relationship(s) that may have inappropriately influenced her in writing this article. references top ↑ ackery, a., tator, c. & krassioukov, a., 2004, ‘a global perspective on spinal cord injury epidemiology’, journal of neurotrama 21(10), 1355–1370. http://dx.doi.org/10.1089/neu.2004.21.135 burt, a.a., 2004, ‘the epidemiology, natural history and prognosis of spinal cord 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accepted: 07 feb. 2019; published: 14 aug. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: there is increasing interest in the collection of globally comparable disability data. context may influence not only the rates but also the nature of disability, thus locally collected data may be of greater use in service delivery planning than national surveys. objectives: the objective of this article was to explore the extent to which two areas, both under-resourced but geographically and socially distinct, differed in terms of the prevalence and patterns of disability. method: a cross-sectional descriptive survey design was utilised, using stratified cluster sampling in two under-resourced communities in the western cape, south africa. nyanga is an informal urban settlement in cape town and oudtshoorn is a semi-rural town. the washington group short set of questions was used to identify persons with disabilities (pwd), and a self-developed questionnaire obtained socio-demographic information. results: the overall prevalence of disability was 9.7% (confidence intervals [cis] 9.7–9.8) and the proportion of pwd was significantly different between the two sites (chi-sq = 129.5, p < 0.001). in the urban area, the prevalence rate of any disability was 13.1% (cis 12.0–14.3) with 0.3% (cis 0.1–0.6) reporting inability to perform any function at all. in contrast, the semi-rural community had a lower overall prevalence rate of 6.8% (cis 6.0% – 7.8%) but a higher rate of those unable to perform any function: 1% (cis 0.07–1.4). disability was associated with gender, age, unemployment and lower income status in both areas. conclusion: deprived areas tend to show higher disability prevalence rates than the national census estimates. however, the discrepancy in prevalence and patterns of disability between the two under-resourced areas indicates the need for locally specific data when planning health interventions. keywords: disability; prevalence; context; service planning; census; survey. introduction according to the world report on disability, data on disability should be collected to estimate the prevalence of disability, plan appropriate services and to monitor equalisation of opportunities for people with disabilities (world health organization & world bank 2011), among other reasons. acknowledging the poor access to rehabilitation services by people with disabilities in south africa (maart & jelsma 2013), the department of health (doh) in the western cape commissioned two surveys of disability to inform the planning of appropriate services in the province. two under-resourced areas, nyanga in the rapidly growing large city of cape town, and the other in a much smaller town that serves a farming community, oudtshoorn, were chosen by the doh as being representative of provincial diversity. this article reports on the findings of these surveys. determining disability prevalence is a complex exercise because of the various discourses associated with the understanding of disability. before the advent of the international classification of functioning, disability and health (icf) (world health organization 2001), disability data were collected and presented using a medical model which entailed simply counting the number of people with impairments, which may have resulted in the under-reporting of disability, specifically in low-income countries (loeb, eide & mont 2008; mont 2007a; world health organization). the introduction of the icf and its conceptualisation of disability led to the realisation that prevalence would be greatly influenced by contextual differences across population groups, which may affect the degree of functional limitation experienced by people living with impairments. contextual differences and the population profile could be used as criteria for prioritising access to health services (department of health 2015; national planning commission department). communities with limited resources should be prioritised in service planning to ensure their continued participation in society. the national health insurance white paper has recognised the marginalisation of the majority of south africans because of the apartheid legacy, and therefore prioritises poorer communities in health service delivery provision (department of health 2017). the icf defines disability as: an umbrella term for impairments, activity limitations and participation restrictions. it denotes the negative aspects of the interaction between a person’s health condition(s) and that individual’s contextual factors (environmental and personal factors). (world health organization 2001:3) the icf conceptual framework has been adopted by the united nations (un), and has become the standard for obtaining globally comparable disability data (world health organization 2001). the washington group (wg) short set of questions, developed to screen for disability, is based on the icf framework and has been tested and used in south africa and other countries (loeb & eide 2006; madans et al. 2004; palmer & harley 2012; schneider et al. 2009). the global burden of disease report, based on country reports of mortality and loss of health because of disease and injury, estimated the global prevalence of disability to be 15%, with higher prevalence rates estimated for low-income countries (gbd 2010 country collaboration 2013). in contrast to these estimates, high-income countries have consistently reported greater disability prevalence rates compared to low-income countries (world health organization & world bank 2011). there may be several reasons for this, some of which could be the increased longevity of the ageing population in high-income countries and better recording of morbidity and disability data (palacois-ceña 2013). the apparent under-reporting of disability in low-income countries has been attributed in part to the stigma associated with disability in some areas and reporting methodologies (baskind & birbeck 2005; green 2003; ravim & handicap international mozambique 2010; sorsdahl et al. 2012, schneider 2009). this lower reported prevalence rate is evident in south africa, where the national census estimated the prevalence of disability to be 7.5% in 2011 of the total population (statistics south africa 2012). the highest prevalence of disability has been reported among those with lower income, particularly those who had no schooling (10%) compared to those who had post-secondary education (3%) (statistics south africa 2012). black africans, who generally reside in under-resourced communities, were still found to have the highest rate of disability (7.8%) in the 2011 census (lehohla 2005; statistics south africa 2012). disability prevalence in south africa is still closely associated with race and development, with those communities who have experienced greatest disadvantage presenting with the highest disability prevalence (statistics south africa 2012). rural provinces such as the free state, north west and the northern cape have reported disability prevalence rates between 10% and 11% (statistics south africa 2014). mcdermot (2011) emphasised the need for unbiased disability prevalence measures to ensure accurate measures of disability to identify disparities and to measure changes over time (mcdermott & turk 2011). if data are to be useful for planning services, they must be relevant to the area in which the services are to be provided, as acknowledged in the national development plan (ndp) 2030, which recognises that ‘there is no one-size-fits-all approach’ (1) (department of health 2015). it is the contention of the authors that data from the national census relating to disability may not be sufficiently nuanced to be used in service planning, as they may not capture all of the factors shaping service needs of different communities. the items related to disability are included as part of a large battery of questions and the respondents may not give these items due consideration. as context may influence not only the rates but also the nature of disability, locally collected data may be of greater use in service delivery planning than national surveys. the objective of this article was thus to explore the extent to which two areas, both under-resourced but geographically and socially distinct, differed in terms of the prevalence and patterns of disability. research setting as the influence of contextual factors was to be explored, two diverse sites were identified within the province: nyanga, an urban township area in cape town, and oudtshoorn, a town in a farming district. both these areas are considered deprived, as measured in the national multiple deprivation index survey (noble & babita 2006). although similar regarding low income and high unemployment rates, they differ in language, culture and infrastructure. nyanga is one of the oldest townships in cape town, created specifically for black african migrant workers in the apartheid era. nyanga still has a majority black african isixhosa-speaking population (98.9%). the area consists of different dwelling types which include brick houses, shacks (informal houses usually consisting of zinc or iron structures) and backyard housing (temporary structures erected on properties which have permanent structures) (housing development agency 2012). oudtshoorn, a town in a farming district, is home to a primarily afrikaans-speaking population of mixed-race or khoi-san ancestry (77%) who were also disadvantaged during the apartheid era. black africans made up 12% of the population in oudtshoorn (housing development agency 2012). the inhabitants live primarily in brick houses. the results of the 2011 national census (table 1) indicate that among other differences, oudtshoorn has a larger proportion of elderly people, a much lower population density, fewer female-headed households and more owner-occupied brick houses, compared to nyanga. table 1: comparison of the 2011 national census results. methodology sampling descriptive cross-sectional household surveys were conducted, and two-stage cluster sampling was used (galway et al. 2012). a group of informants were identified through the randomised, stratified cluster sampling of households in the two areas. stratification was based on the type of dwelling as identified in an aerial map. the households to be visited were selected by delineating and numbering equivalent in size areas on a google map and then randomly selecting areas which appeared to consist chiefly of each type of dwelling, for example informal and formal, stand-alone houses and apartments. the number of dwelling type to be included was proportional to the census information (housing development agency 2012). excel rand function was used to identify these clusters for inclusion. data collection was begun at the corner dwelling on a randomly chosen block in each selected area, and continued along the street from there, visiting every alternate house. the informant was the head of the household or the eldest person available at the time of the visit. they were interviewed to identify people with disabilities; thus, proxy report was used to identify those with disability (maart & jelsma 2013). the sample size was calculated using epi-info stat calc, version 6. the 2001 census data were used (proposal submission for the research was submitted before the release of the 2011 census information), which reported the oudtshoorn population to be 85 000 and that of nyanga 58 723. as cluster sampling was used at the level of geographical area and household, a design effect of 1.5 was used (skinner 1986). the estimated prevalence of disability was 5.2% (statistics south africa 2001). with these parameters, a sample of 2778 subjects in oudtshoorn and 2753 in nyanga was required (95% confidence intervals [cis] and a 1.5% margin of error). anticipating that the average household in this province consisted of 3.8 members in 2001 (housing development agency 2012), the minimum number of households to be visited was approximately 900. to allow for non-responses, the final number of households to be visited was 1000 in each area. subjects of the surveys included all adults and children older than 5 years of age who were permanent residents in the identified household. information was only gathered on older children as the wg short set is not appropriate for children under 5 years of age (madans et al. 2004). individuals who were visitors to the home or not permanent residents were excluded from the study. instrumentation a questionnaire was developed that included basic demographic details of all household members and the informants themselves (maart & jelsma 2013). this included income, education and employment questions. there were three sections concerned with demographic characteristics (e.g. age, education) social characteristics (e.g. household composition) and biomedical characteristics. the wg short set (six questions) was used to identify persons with disability (madans et al. 2004). this instrument has been validated for use in south africa, and has been used in the south african national census since 2011 (lehohla 2005; schneider et al. 2009). procedure home-based carers working in the respective communities were identified as research assistants to assist with data collection. the research assistants attended a training workshop on administering the questionnaire and a research supervisor from the community was appointed for quality assurance purposes (maart & jelsma 2013). ethical approval for the study was obtained from the human research ethics committee at the university of cape town. prior to conducting the interview, the study was explained to the informant and written and verbal consent was obtained. if for any reason, respondents in the identified household could not be interviewed, a further visit at an alternative time was attempted before exclusion of the household. data analysis descriptive statistics were used throughout. the percentage prevalence of the different levels of disability was calculated, with the numerator being the number of people reported to have scored ‘some difficulty’, ‘a lot of difficulty’ and ‘unable to do’ based on the wg short set questions. the denominator was the total number of household members reported on by the informants. the demographic details and disability prevalence and severity were compared between the two areas, using chi-square, t-test or the mann–whitney u tests, depending on the nature and distribution of the data. confidence level was set at 95%. ethical considerations the research assistants attended a training workshop on administering the questionnaire. a research supervisor from the community was appointed for quality assurance purposes. ethical approval for the study was obtained from the human research ethics committee at the university of cape town (hrec number 098/2012) and all participants signed informed consent prior to participating in the interview. results a combined total of 2107 households were approached in the two areas: nyanga and oudtshoorn. the demographic details are presented in table 2. table 2: comparison of the demographic characteristics of informants from the two sites. demographic characteristics of the two populations oudtshoorn informants were significantly older on average than those in nyanga (p < 0.001). in oudtshoorn, there were more female informants (50.7%) compared to nyanga (48%). the mean age of the entire sample was 32.8 (sd 18.0) years and there was no significant difference in the mean age between the two areas. the average household size was greater and the care dependency ratio almost twice as high in oudtshoorn (0.47) compared to nyanga (0.25). some form of employment was reported by 38.8% of the total sample. a smaller proportion was employed in oudtshoorn (28.0% compared to 49.9% in nyanga). there were a large number of missing responses to the income question in both sites and the median income category of the total sample was r1000 – r2999 of those reporting. the oudtshoorn respondents reported significantly less income than nyanga respondents (p < 0.001). disability prevalence in all, 645 individuals screened positive for having difficulty in any one of the domains, a prevalence of 9.7% (ci 9.0% – 10.4%). the demographic information of the surveyed sample who did not have disability is compared to that of the people with disability (pwd) in table 3. table 3: demographic information of those who screened positive for disability compared to those not reporting a disability (n = 6637). people with disability tended to be older (p < 0.05) and there were more women (p = 0.001), higher unemployment (p < 0.001) and a lower income (p < 0.001) in this group compared to people without disabilities. people with disability in oudtshoorn were older than their peers in nyanga (p = 0.033) and had a lower median income (p = 0.017) (table 4). table 4: demographics of people screening positive for disability across the two sites. a significantly smaller proportion of respondents were identified as having a disability in oudtshoorn (244, 6.8%, ci 5.9–7.6%) compared to nyanga (401, 13.1%, ci 12.0% – 14.3%; chi-sq = 77.8, p < 0.001) (table 5, figure 1). in addition, the cis of the different severity levels did not overlap. figure 1: percentage of total reported to have different levels of disability severity. table 5: prevalence of disability in the two sites (oudtshoorn n = 4028, nyanga n = 3308). there was a significant association between age group and presence of disability in the overall sample. the oudtshoorn sample showed a relatively higher proportion of elderly and a lower proportion of youth among those with disabilities, compared to nyanga (table 6). table 6: disability prevalence by age. discussion the aim of this study was to compare disability prevalence and severity, together with demographic characteristics, in two under-resourced communities in the western cape province, to determine whether more nuanced data on disability are required for service planning. it was the contention of the authors that inadequacies in service planning could result if national census data only were relied upon. sample the study samples were representative of their respective districts and the western cape (statistics south africa 2012), in that they demonstrated a higher proportion of women compared to men in the population, and that the mean ages found in the study are comparable to the census of 2011 (statistics south africa 2012). the study sample was impoverished relative to the western cape at large, with an approximate average annual household income (r36 000, approximately $3600), which is much lower than the average household annual income recorded for the western cape (r143 461/$9647.59) (statistics south africa 2012). the annual income described in the study would translate to approximately $30 per month, which is less than $1 per day; this is way below the upper-bound poverty line of r992. people identified with disability, who were more likely to be female and were older on average, have a higher unemployment rate and lower income than the general sample. the trend of increased disability among women is well documented globally and locally (ethgen et al. 2004; palmer & harley 2012; statistics south africa 2012; trani & bakshi 2008). the higher incidence of non-communicable diseases, associated co-morbidities and increased life expectancy among women could account for the higher prevalence of women screening positive for disability (peeters et al. 2013). the mean age of those screening positive for disability was older than the general sample which is not unexpected (kostanjsek et al. 2013). the lower income associated with disability in this study is in contrast to that of jelsma et al. (2007), who reported the household income to be higher in south african households with a disabled member and suggested that the disability grant available to those with disability could be the reason for this (jelsma et al. 2008). it appears that in an urban setting, disability is associated with added financial advantage, as nyanga reported a much higher median income for both the overall sample and among pwds. prevalence the overall and site-specific prevalence rates in the study sample were higher than the average disability prevalence reported in the national census (2011), despite the use of the same instrument to identify disability. as anticipated, the localised surveys revealed considerable differences between the two areas surveyed. not only was there a variation in the overall prevalence of disability, the patterns differed with regard to levels of severity, ages and income of those with disabilities. while the overall rate of 9.7% is still lower than the who (2011) global estimate figure of 15%, the oudtshoorn prevalence was 5% less than that of nyanga. however, the prevalence of those who were ‘unable to do’ although small was about three times higher in oudtshoorn. the disability prevalence in this study was found to be 4% – 5% for severe disability and 9% – 12% for moderate to mild functional limitations. these rates are similar to the world health survey (2013) (4% for severe and 16% for moderate to mild, respectively), and the global burden of disease (2010) estimation (3% having extreme or severe disability and 15% having mild to moderate disability). the estimate for moderate to mild is somewhat lower (gbd 2010 country collaboration 2013; ustun 2003). however, as hypothesised, the survey showed a much higher disability prevalence rate (9.7%) than reported in the south african census data (5.7%). the disability prevalence rates in both areas (nyanga 13.1% and oudtshoorn 6.8%) were higher than the western cape prevalence rate of 5.4% and comparable to less resourced provinces (statistics south africa 2014). these results may be partially explained by the continued deprivation and marginalisation experienced in disadvantaged communities in otherwise well-resourced provinces. context apart from income and ethnic background, other aspects of the context and social environment are very different between the two areas. the burden of disability is borne by different groups in the two areas. in nyanga, the mean age of those with disability was lower and 80% of those with disabilities were in the 15–59 year ‘adult’ group. the increased prevalence of ‘some’ and ‘severe’ difficulties in this age group in nyanga could be ascribed to the fact that nyanga is described as one of the most violent neighbourhoods in the country, leading to high rates of trauma-related disability (south african police service). the high level of interpersonal violence is fuelled by rapid urbanisation and socioeconomic disparities which are much more evident in the urban context (mont 2007b). these inequalities contribute greatly to the burden of disease and disability in south africa (norman et al. 2007). the extremely high population density of nyanga (table 1) (18 775 persons per square kilometre compared to only 27 persons in oudtshoorn) may also be a factor. the impact of so many people living in a confined physical space is likely to manifest itself in pressure on facilities, lack of open spaces for recreation and invasion of personal space, all of which may contribute to the poor social climate evident in the high crime statistics (south african police service). the difference in average age and household size between the sites could also be linked to urban migration. it is likely that those who become severely disabled often return to their families in rural areas, and this could explain why the proportion of people ‘unable to do’ is higher in oudtshoorn (nearly three times as many) than in nyanga. another explanation could be lack of access to health services, which might be related to screening of health-related complications leading to more serious outcomes (maart & jelsma 2013). this, coupled with the higher care dependency ratio, indicates that caregivers in oudtshoorn may well have difficulty in providing the required care to those with the most severe disability (maart & jelsma 2013). at the same time, those in nyanga live in smaller households and they may not have someone who is able to aid and care. more research is thus required to adequately inform service delivery needs in the two areas. implications of findings great emphasis has been placed on obtaining comparable data (madans et al. 2004; mont 2007a; world health organization 2001); however, the results of this study show that the simple reporting of only the prevalence of disability fails to capture the differences between communities. for services to be objectively prioritised, a more nuanced understanding of those presenting with disability is required. although national or large-scale surveys such as the census can give general estimates of disability, these may not be useful for service planning. this study demonstrated that two areas, both of which are economically deprived, showed very different patterns of disability, both to one another and to provincial figures (maart 2015). locally specific information relating to persons with moderate to severe disability is of most relevance to policymakers and service providers, particularly in resource-constrained environments where there are competing priorities. according to helander (1992), it is reasonable to assume that persons with severe disabilities are dependent on others physically, economically, socially and psychologically, and would thus require a multidimensional approach to combat exclusion and facilitate their participation in society (helander 1992). in both areas, our results indicate the need for continued financial support through disability grants and the creation of job opportunities, as pwds appear to be less able to find employment and live in households with lower monthly income than those without disability. study limitations the major weakness of the study was that the estimates of disability were based on the proxy reporting of informants (maart 2015). it is well known that proxy reports often result in under-identification of subjective problems (maart 2015), such as mental and emotional problems, as these are not as readily apparent as physical or sensory disabilities. it is also acknowledged that the prevalence of depression and other mental disorders is likely to be under-reported as it is not included in the wg short set. a further limitation is that children younger than 5 years of age were excluded from this study as the wg short set has not been validated for this age range, and this gives a skewed view of disability and services required (madans et al. 2004). the number of refusals in nyanga is a limitation that should be investigated as this group could have added to the disability prevalence. a further limitation could also be that the census data of 2001 was used to estimate the sample size. conclusions and recommendations this study has demonstrated that small-scale surveys can provide more nuanced data on disability than national census data. the higher disability prevalence rates reported in this study highlight the limitation of using national census data in planning services for people with disabilities, in that the prevalence in the geographic areas could be underestimated. inaccurate estimates mean that those who are not counted will remain invisible and will not reach their full potential. the different patterns of disability identified in the two study sites might well necessitate different approaches to the provision of rehabilitation services. it is recommended that the national census be supplemented by smaller localised disability surveys for service planning. the western cape department of health has been proactive in its community planning for people with disabilities and has used the results of this survey to inform policy on intermediate and community-based care. there is, however, a further need to provide rehabilitation services appropriate to the patterns of disability reported. for example, the oudtshoorn community may benefit from home-based care services for those who are severely disabled. in contrast, in nyanga, the disabilities are primarily in the wage-earning age group, and the focus should perhaps be on specialised rehabilitation for improvement in functional level and possible return to work. services must also do more than provide rehabilitation – they must also address determinants of disability in under-resourced areas. collaboration is needed between different sectors of government such as police, social development and health to ensure a safe and supportive environment for people with disabilities. further research is required to establish the specific needs of people identified with disability living in different communities. in conclusion, this study demonstrated the value of small-scale community-based surveys in providing more nuanced data for service planning. disability prevalence alone does not highlight the needs of different age groups or across different levels of severity. this study is part of a phd thesis focussing on disability in under-resourced areas in the western cape, south africa (maart 2015). acknowledgements the researchers would like to acknowledge the contribution of the home-based carers in oudtshoorn and nyaga who assisted with the data collection. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.m. conceptualised the study, managed the data collection process and assisted in writing up the final article. s.m. received funding from the harry crossly foundation and the uct research committee to assist in the data collection. s.a. contributed to the design of the study and read through the final manuscript. j.j. jointly conceptualised the study, analysed the data and assisted in writing up the final manuscript. j.j. received funding from the euroqol foundation for the translation and validation of the eq-5d in the research setting. all authors approved the final manuscript. funding funding was awarded by the euroqol research foundation, the university of cape town research committee and the harry crossley foundation. data availability statement data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references baskind, r. & birbeck, g.l., 2005, ‘epilepsy-associated stigma in sub-saharan africa: 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abstract introduction ubuntu: implications for understanding disability making visible the invisible: a common humanity in south africa? ‘silence would be treason’: environmental justice in nigeria and kenya discussion acknowledgements references about the author(s) maria berghs private, belgium citation berghs, m., 2017, ‘practices and discourses of ubuntu: implications for an african model of disability?’, african journal of disability 6, a292. https://doi.org/10.4102/ajod.v6.292 opinion papers practices and discourses of ubuntu: implications for an african model of disability? maria berghs received: 06 june 2016; accepted: 28 oct. 2016; published: 31 jan. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: southern african scholars and activists working in disability studies have argued that ubuntu or unhu is a part of their world view. objectives: thinking seriously about ubuntu, as a shared collective humanness or social ethics, means to examine how africans have framed a struggle for this shared humanity in terms of decolonisation and activism. method: three examples of applications of ubuntu are given, with two mainly linked to making explicit umaka. firstly, ubuntu is linked to making visible the invisible inequalities for a common humanity in south africa. secondly, it becomes correlated to the expression of environmental justice in west and east african countries. results: an african model of disability that encapsulates ubuntu is correlated to how africans have illustrated a social ethics of a common humanity in their grassroots struggles against oppression and disablement in the 20th century. ubuntu also locates disability politically within the wider environment and practices of sustainability which are now important to the post-2105 agenda, convention on the rights of persons with disabilities (crpd) and the (un) sustainable development goals linked to climate change. conclusion: a different kind of political action linked to social justice seems to be evolving in line with ubuntu. this has implications for the future of disability studies. introduction the literature about disability and decolonisation in disability studies has primarily been shaped by academics located in a minority world or the global north (i.e. connell 2011; grech 2015; meekosha 2011), even though this is slowly changing (mji et al. 2011; opini 2016). despite this state of affairs, decolonisation does not have to be epistemologically nor ontologically located within the imaginaries of elite northern academics. examining the social and cultural history of the african continent tells a completely different story and illustrates how africans have formulated and shaped theories as well as actions of decolonisation and relationships to disability in their own epistemological and transnational terms. as such, this paper does not seek to decentre but argues that theory and the links to activist practice have always been located in the global south even in its hybrid or transnational forms (comaroff & comaroff 2012; de sousa santos 2015:4). it seeks to examine the implications of the continent’s rich and diverse legacy, in terms of activism and social movements, to celebrate and learn from. in africa, there is a multiplicity of interpretations of ‘disability’ from: depictions found in oral histories, music, dance, ritual, (secret) society practices of different ethnic groups; the colonial and postcolonial histories of medical segregation and prevention; how differing religions, evangelical and missionary services and their organisations understand disability; the measurements and international standards set by international organisations such as the world health organization, as well as how these institutions demarcate differences to disease, illness and impairment; the influence of the disability movements that ascribe to various definitions of disability and their advocacy on international and national policy agendas linked to human rights, development and now sustainability; the ‘persons with disabilities’ definition advocated by the united nations (un) and enshrined in legislation in the convention on the rights of persons with disabilities (crpd) and how that becomes translated nationally and implicated bureaucratically in the machinery of the state; the theories and models of disability that international organisations, civil societies and non-governmental organisations are working with; how radio, tv and social media are impacting disability; and how everyday popular culture, music and the arts define and people understand what disability entails. in this paper, i will examine disability in terms of ubuntu. southern african scholars and disability activists have argued that ubuntu or unhu is a part of their world view – a philosophy of shared collective humanness and responsibility (i.e. chataika et al. 2015; mji et al. 2011; opini 2016). i will elucidate what ubuntu means and then examine how it connects to social action. the aim is to shine a light on what african discourses and practices can teach about disability. how disability becomes defined and framed, implications of this for people’s lived experience and what we can learn about the future direction of disability studies. ubuntu: implications for understanding disability ubuntu is an african humanist and ethical world view where disability, as part of a common humanity, is necessarily part of what makes us human. in the zulu language, the expression is umuntu ngumuntu ngabantu which translates as, ‘a person is a person through other persons’ (shutte 1993:46). louw (1998), quoting van der merwe (1996:1), argues that another reading of this phrase is, ‘a human being is a human being through (the otherness of) other human beings’. at the heart of ubuntu is a respect for a diversity of what it means to be human (eze 2008). van der merwe (1996) argues that ubuntu is not just descriptive but also a normative ethical claim about how we should behave towards others and how to become human. in an ubuntu model of disability, impairment becomes cognitive, sensory, mental, physical (inclusive of biological) and spiritual diversity that can have a multitude of shared meanings that society, as human collective, constantly (re) make together. ubuntu can change over time and recognises difference of experiences of diversity of humanness (as positive or negative), which are part of our shared humanity. this includes interpersonal relationships and reactions, such as affect (livingston 2008). disablement happens when that otherness or diversity becomes a difference predicated as inhuman, for example, in that a person is viewed as threatening the social order, kinship relations or is viewed as morally outside the realm of what it socially means to be human. in order to understand humanness, murove (2004) and le grange (2012) correlate ubuntu to ukama, a feeling of relatedness or interdependence, but argue that this includes the wider environment, the biophysical world. thus, to understand humanness and relatedness means to understand that what it means to be human is part of a biologically (le grange 2012) and spiritually diverse ecology (murove 2004). according to murove (2004), ubuntu encompasses a spiritual interdependence and respect, for example, towards the ancestors and sacred found in our ecosystems, such as burial grounds or totemic animals. this opens up disablement to also include a diversity that is wider than just biological impairment orientated but is also linked to understanding how the spiritual and ecological are linked together. disablement is also not fixed but can be rectified through taking on the ethical responsibilities of shared collective actions. oppression occurs when an individual, collective or the (physical or spiritual) environment of what allows ubuntu, our common humanity, is being threatened by inhuman actions that cause harm, such as forms of exploitation, degradation or violence. thinking seriously about ubuntu, as a shared collective humanness or social ethics, means to examine how people framed a struggle for this shared humanity in terms of a past and present history of decolonisation and activism (louw 1998). ubuntu has mostly been analysed in terms of how it leads to respectful community dialogue and consensus for a restorative justice, for example, in the south african post-apartheid context (louw 2006). an application of ubuntu in terms of restorative justice, for instance, linked to the south african truth and reconciliation commission, was to guarantee that a victim gains an apology for harm done and the perpetrator asks for forgiveness and is reintegrated back into a community. the victim and perpetrator are viewed as interlinked, part of ubuntu, with both necessitating healing. ultimately, they are implicated in terms of the strength of the group that depends on a social ethics of humanness or ubuntu that has been harmed, because of a history of colonialism and apartheid violence. yet, critics have also argued that ubuntu places the needs of group solidarity first and does away with individual criticism of the community or even real justice for both victims and perpetrators (louw 2006). this could be because an understanding of how ubuntu relates to umaka is missing in that restorative justice does not actually restore the environment, which is part of humanness. viewing ubuntu as a social ethics upholding humanity outside and inside the south african context illustrates what restorative actions look like to prevent disablement. it is ubuntu that allows the identification of african social ethical discourses and practices countering colonialism, disablement and oppression. a social ethics of ubuntu has its roots in collective social action for a shared humanity against oppression and injustice. in the african context, this has taken on multiple forms. in this paper, i will give three examples of applications of ubuntu, with two mainly linked to making explicit umaka. firstly, i examine how ubuntu became linked to making visible the invisible inequalities for a common humanity in south africa and then turn to expression of environmental justice in west and east african countries. lastly, the paper turns to establish a dialogue on what the history and understanding of practices of ubuntu can tell us about future directions in disability studies. making visible the invisible: a common humanity in south africa? above all, we want equal political rights, because without them our disabilities will be permanent. i know this sounds revolutionary to the whites in this country, because the majority of voters will be africans. this makes the white man fear democracy. from mandela, nelson (1978) the struggle is my life. (finkelstein 2001a, p.2.) nelson mandela is often viewed as the personification of what ubuntu should mean, especially in terms of his actions towards reconciliation in post-apartheid south africa. in the above quote, taken from a speech he gave before he was imprisoned, he notes how the system of apartheid and inequality leads to inhumanity. an inhumanity that is predicated on difference of skin colour as impairment. an impairment that mandela knew was an illusion. the disability that he refers to is the inability to live autonomously and have rights of citizenship. this speech struck a chord with many african activists fighting for their independence and freedom. it also galvanised people who faced discrimination based on differences they felt were artificial such as age, religion, ethnicity, sexuality, gender and so on. much consciousness rising from the 1960s onwards focused on making visible these invisible injustices that people experienced and this was revolutionary. the south african history of activism in this respect has been fundamental in revising the definition and meaning we give to ‘disability’, successful organisation around rights and embodying a language of a common humanity in ubuntu. i examine three ways in which this has been done in south africa’s history; (1) in influencing the social model of disability, (2) disability rights activism and the unification of social movements, and (3) a shared humanity. influence on the social model of disability mandela’s speech was also important to the disabled activist and academic, vic finkelstein, who in the 1960s was involved in south africa’s anti-apartheid movement and struggle for independence (see berghs 2015). for him, disability also meant a loss of freedom and inaccessible rights of citizenship. finkelstein was one of the founders of united kingdom’s union of the physically impaired against segregation (upias) in 1972 with paul hunt. upias was an organisation run by disabled activists that also lay at inception of the social model of disability. the social model makes a difference between impairment (physical, cognitive, sensory) and the disability as experience of oppression caused by society. finkelstein recounts that it was his jewish background, witnessing of apartheid and experiences of imprisonment as disabled activist that lead to this understanding of disability (finkelstein 2001a, 2001b). until that point, he had accepted an understanding of ‘disability’ in terms of medical and charitable approaches. yet, while he was imprisoned he noted that the apartheid state was forced to make the prison accessible to him and thus the state could remove barriers to ensure his inclusion and independence. when threatened with violence that would break his legs, he noted he was already in a wheelchair. when freed from prison, he was given a banning order but noted that everything (i.e. health, housing, transport, social activities) was already socially inaccessible to him so the banning order was expedient (finkelstein 2001a, 2001b). in keeping with ubuntu, mandela questions the very notion of impairment but finkelstein does not. from personal experience, he knew that impairment could be tragic but he felt this did not explain his segregation from society; a society that seemed to have been created for able-bodied people with different abilities (finkelstein 2001b). he interpreted disability as social oppression that was imposed on top of his personal (tragic, painful and otherwise) experiences of impairment. at the vanguard of national grassroots organisation of disabled people as well as formation of disabled people’s international (dpi), he also chaired the first course in the world on ‘handicap’ and started the disability arts movement in the united kingdom (sutherland 2011). finkelstein was a ‘white’ middle class south african and while he faced marginalisation from society, this was very different from the experiences of most ‘black’ south africans who had to deal with enforced poverty, lack of rights, indiscriminate violence and institutional racism everyday (howell, chalklen & alberts 2006; watermeyer 2006). this mobilised him and other activists to organise more holistically around disability to create advocacy networks across the world. disability rights activism the anti-apartheid, black consciousness and student movements in south africa all played big roles in inspiring disability activism and self-organisation of the late 1970s and throughout the 1980s (howell et al. 2006). the 1980s proved pivotal for disability activism in terms of international attention and south african support. howell et al. (2006) argue that visits of south african disability leaders, like mike du toit, to the 1980 rehabilitation international conference where activists rejected medical professional control and interpretations of disability, was foundational. until that point, disability was viewed as a medical problem needing rehabilitation. the conference questioned that understanding of disability and the emphasis was placed on common forms of oppression instead. mike du toit was clear that this does not mean a rejection of professionals nor rehabilitation but a realisation of bigger needs and entitlements of citizenship, as well as removal of all barriers (coleridge 1993; howell et al. 2006). disabled people walked out of the conference and set up their own organisation, which become dpi. this was important in uniting disabled people across differences of impairment, class, ethnicity, gender and so on, and in advocating for international collaboration and change against discrimination to reclaim their rights and places in society. the year 1981 was the un year of disabled people, 1982 heralded disabled people south africa as begun by disabled activists and 1983 heralded the un decade of disabled persons. thus, the 1980s began cross-sectional national disability activism but also connected it to international institutions, legislation and support. in spite of the national activism of the 1970s and international activism of the 1980s, disability was still viewed as a specialised issue and not really connected to the broader landscape of inequalities in south africa. in many ways, an understanding of ubuntu, as moving away from artificial differences between people and as enabling an environment of dignity was not brought to the fore. a shared common humanity? as stated above, disability rights activists were involved in the anti-apartheid movement, which influenced the social model as well as the ways in which disability as experience of double or even triple oppression occurs. in order to include and link disability to other forms of human rights in the post-apartheid policy landscape of the 1990s, activists also began advocating for disability rights. the south african disability rights charter became pivotal to the movement, but when there was political inaction, disabled people took over central durban in 1992 to protest and get their rights on the political agenda (watermeyer 2006). the fact that they had to do this speaks to the way in which the damage done to ubuntu, through a history of colonisation and apartheid that emphasised differences between people instead of uniting them, was never fully interrogated. as such, the legacy of nelson mandela in actually putting into practice ubuntu, in its holistic form of democratic interdependence, was never engaged with politically. if i am, because we are, then ensuring your well-being, dignity and rights as citizen, will also ensure mine. this meant that splintered rights activism in south africa often faced an uphill battle to connect citizenship to broader debates around how to put ubuntu into wider social, political, economic and environmental actions, rather than just historical reconciliation. in this way, social injustices and inequalities, while visible to people, were treated as invisible in broader debates. if we examine the fight for greater democracy and equality in south african society and take human immunodeficiency virus infection and acquired immune deficiency syndrome (hiv/aids) activism as an example, disability was initially excluded from such debates. the new ‘moral politics’ of hiv/aids (robins 2006) emphasised collective responsibilities for individual human life against much political and economic pressure, but this did not initially include disabling symptoms of hiv/aids nor the disabled community (hanass-hancock & nixon 2009). it was only from 2000 onwards, when the political fight for generic anti-retrovirals for all south africans became successful that people began to think of cross-sectional issues between hiv/aids and disability in terms of chronic or ‘episodic’ disablement, medical and rehabilitative needs across the life course (hanass-hancock & nixon 2009). by 2007, the disability resources that had been built up professionally, such as community-based rehabilitation, became relevant to hiv/aids testing and treatment, and the needs of disabled people linked to hiv/aids were taken into account in the africa disability and hiv & aids campaign (hanass-hancock & nixon 2009). while these changes occurred during the african decade of disabled people (1999–2009), disability was still viewed as a demarcated issue and not a part of enabling a human diversity as argued in african understandings of ubuntu. human diversity entails interrogating the political and economic environment and demanding social justice. in order to understand this common humanity and shared diversity, it is useful to examine african environmental activism and what the concept of responsibility for others and shared caring encompasses. ‘silence would be treason’: environmental justice in nigeria and kenya when thinking about protracted conflicts, terror and violence in africa, connections are often made to its rich natural resources and polemical debates often centre around the ‘resource curse’ and tensions between states, (inter)national organisations and transnational corporations (humphreys, sachs & stiglitz 2007). if we think about conceptions of ubuntu as inclusive of ukama and disability as a part of ecological diversity (le grange 2012; murove 2004), africans have often been ahead of their time in protesting and inciting activism to protect the environment and differing ecological homelands of their people often from corrupt regimes and large multi-national corporations. if we take the environmentalists ken saro-wiwa and wangari maathai as examples, we note that at the heart of their actions is ubuntu. both understood the ethics of interconnectedness between the individual and natural environment to ensure people’s well-being, dignity and livelihoods. ken saro-wiwa, the nigerian writer, businessman and environmental activist, was one of the first to examine the external and internal political conflicts that lay at the heart of these complex relationships, problematising nigerian state kickbacks and thus legitimacy. twenty years ago, he launched one of the most successful ecological non-violent protest movements, on behalf of the indigenous ogoni people and their homeland, against the national and international oil companies like shell (brittain 2015; pegg 2015). ettang (2014) argues that at the heart of non-violent movements in africa is the concept of ‘community’ found at the heart of ubuntu but i argue that it is the social ethics for the wider environment and ukama that underlies a common humanity. if those social ethical bonds that allow a common humanity are violated and oppression occurs, people like saro-wiwa and wangari matthai because of their interconnectedness take on the collective responsibilities of practices and discourses of justice to restore this and engage in not only healing but also rebuilding the environment. while saro-wiwa fought against the environmental destruction that the shell oil company, the british and the nigerian government were complicit in, it was because of the negative effects it had for human life. he was galvanised by the physical and spiritual environmental threat shell and the nigerian government posed to the ogoni people and their homeland. he and other ogoni leaders were founders of the movement for the survival of the ogoni people (mosop) and organised successful mass indigenous demonstrations against corporations like shell. this brought the environmental destruction happening in nigeria to the world stage, but also advocated for the rights of indigenous people with the declaration of the ogoni bill of rights. saro-wira’s last letters from prison before he was hanged by the nigerian military government, alongside eight other ogoni leaders, in 1995 are found in a book entitled ‘silence would be treason’ (corley, fallon & cox 2013). in those writings, he argues that he stands on the right side of a collective human history and that by keeping silent he would be complicit with the destruction of ogoniland, which would be treason. the united nations environmental programme (unep) published a report in 2011 that illustrated how destructive oil pollution had been and that clearing this up would take over 30 years (unep 2011). fundamentally, unep (2011) agreed with mosop and a one billion dollar clean-up operation of the ogoni homeland finally began in 2016 with the support of the nigerian government. saro-wira took on the responsibilities of collective discourses and actions to ensure ubuntu when it was ignored nationally and internationally. likewise, the kenyan environmentalist, academic and politician, wangari maathai, early on in her book about the green belt movement (gbm), describes how the unep being founded in nairobi in 1972 was of pivotal importance because national governments were more focused on economic gains and tended to exclude environmentalism politically from those activities (maathai 2004a). while the unep, and the nongovernmental organisations (ngos) they involved, were mainly from the global north, they began to involve southern activists and african women who had been excluded from such debates (maathai 2004a). the gbm worked with kenya’s national council of women mainly to empower rural women by planting trees for reforestation starting in 1977. maathai states that she noticed that many rural women were identifying problems of environmental degradation but did not understand the causes and how that linked in to experiences of lack of food or unemployment (maathai 2004a). for maathai, while land and access to resources was tied up in/with decolonisation, land-grabbing, deforestation and environmental destruction of commercial farming were also connected to an unscrupulous government. she (maathai 2010:16) argued that the values that sustained the gbm ‘defined a common humanity’ in upholding the life and well-being of women and their rural communities. furthermore, she stated that in ‘degrading the environment, we degrade our selves’ (maathai 2010:17). for her, there was an interconnectedness between educating women about the environment, sustainability and inter-generational livelihoods that need to be protected for real democracy to occur. hence, maathai’s idea of democracy encompasses the responsibilities of citizens for the protection of ecological diversity and an understanding of the importance of this for our humanness and future freedoms. the work of the gbm came into conflict with the kenyan regime in the 1980s and 90s when maathai’s influence, campaigns against projects on protected land and pro-democracy protests began to rise (maathai 2004a). while targeted by the government and jailed briefly along with pro-democracy activists, she began to engage in hunger strikes that gathered international attention and were supported by mothers of imprisoned activists (maathai 2008). during the move to greater democracy in kenya in the 1990s, she also tried to prevent ethnic violence by planting peace trees but felt that she had to engage in the political system to try and change things from within (maathai 2008). this was to ensure continued education about environmental sustainability and the impact of postcolonial appropriation of resources by those in power in complicity with multi-nationals. maathai was the first african woman to be awarded the nobel peace prize in 2004 and in that speech she again makes links between sustaining the environment, democracy and peace to ensure human dignity (maathai 2004b). the most important part of the speech repeats the idea that it is africans who will find solutions to the problems that they experience and that they have a crucial ‘cultural biodiversity’ to protect and enable them (maathai 2004b). however, in order to do so, she argues they have to stand up to bad governance and that the ‘responsibilities of civil society’, to fight for injustices occurring against the environment, cannot be evaded because of their importance to create ‘cultures of peace’ (maathai 2004b). both saro-wiwa and maathai encompass what ubuntu in discourse and practice entail as a humanist philosophy and ethical social practice connecting people, animals and the earth. as such, they broaden concepts of humanity to include ecological interdependence (ukama) and explain why protecting that diversity becomes necessary for african livelihoods and futures. in their understandings of humanness, they include our place within a physical and spiritual ecology that has to be culturally enabled. discussion the above examples, from activists based in south, west and east africa, are illustrative of how far we have to go to truly implement ubuntu, not only in theory but also in truly restorative social ethical practices that encompass ecological diversity as part of humanness. africans have begun to take the first steps to understand what ubuntu could mean, decolonise from a past and present history of violence and translate it in practice. an african model of disability that encapsulates ubuntu is correlated to how africans have illustrated this social ethics of a common humanity in their grassroots struggles against oppression and disablement in the 20th century (ettang 2014). this illustrates how disability activism and research in africa can be understood as wider in focus than encountered in the global north (chataika et al. 2015; mji et al. 2011; opini 2016). in terms of learning from practices and discourses of decolonisation and setting differing disability agendas, africans have their own histories and examples, to take as epistemological and ontological models to inform their understandings of disability, even in transnational and hybrid forms (comaroff & comaroff 2012; de santos 2015). it also illustrates how ubuntu, as social ethics, has mobilised individuals and communities against injustices and the illusionary cohesion of the group (louw 2006), to restore humanity and uphold individual life and well-being. in comprehending what ubuntu means, the raising of a consciousness of oppression, disablement and legacy of colonial and present violence are interwoven. in african disability studies, more attention is needed to understand how colonial and postcolonial violence become linked to present-day oppression, disablement and loss of life through processes of direct, cultural and structural violence (galtung & fischer 2013). using ubuntu we can ask why the social responsibilities of ethical actions are enabled or disabled individually, socially, by the state or structurally. for instance, while a mother from ghana might attribute socio-cultural reasons to why her child with mental health issues is a ‘witch’ and needs prayer as a cure, the community must begin a dialogue to understand why ubuntu is not socially functioning for that mother and child? socio-cultural and spiritual responses are also dynamic and we can begin to examine in whose interests culture has been negatively appropriated and what functions it serves for people? in ghana, there is structural colonial and postcolonial violence in the lack of government education, access to medical treatment, care and choices linked to people’s mental health needs. that lacuna, in a context of poverty and stigma, is filled by pentecostal churches and prayer camps who make money through warehousing children and adults with mental health issues, often leading to direct human rights abuses, suffering and violence (hrw 2012). ubuntu does not place individual blame on a child, nor mother, but asks why a community, institution or state is failing in its compassionate responsibilities towards upholding respect for human diversity, who is filling the gap and why and what can be done to change such discourses and practices. decolonising disability in terms of ubuntu is not without risks because of the rewards and profit attached to oppression. colonial and postcolonial violence illustrated the political difficulties and real dangers to embodiment of raising consciousness of any form of oppression but also how violence can be read as an illustration of disablement or lack of well-being and violation of humanity in a society. in many countries in africa, differing national and international elites now use practices of violence and discourses that disavow diversity (i.e. by using ethnicity, tribalism, religion, gender and even ubuntu) to ensure control over resources and people to politically and economically enrich themselves. how do such longstanding inequalities and multiple forms of discrimination become linked to experience of disability? how do they affect the current issues that africans are grappling with such as education, employment (formal and informal), corruption, violence, poverty and rise of extremism (such as boko haram in nigeria) and securitisation. how does this affect disability activism, grassroots organisation, civil society and links to international institutions and advocacy when the state, international organisations and multi-nationals are predatory or function along their own interests? does this mean that disability needs to be about ensuring greater ubuntu in society in a wider sense of diversity than impairment? what about in places where urbanisation has led to the creation of mega-cities and a rising middle class? what does ubuntu and disability entail in terms of ensuring an urban and spiritual sustainability? if what disablement and oppression mean in the african context ties into the ascription of a difference that is threatening a common humanity, this entails that disability is also a more holistic concept then how it is understood in the global north. if i am through the otherness and diversity of another (eze 2008; louw 1998), this does not deny feelings of ambivalence, pain or disgust (livingston 2008) but locates them as part of the complexity and nuance of disability. it also calls into question the ascription of impairment as disability instead of diversity? what is at issue is what individual moral actions or restorative politics we engage in against disablement and oppression. examining disability history in the african context illustrates that disabled people have always been part of a visible fight for justice and rights but that disability is still viewed as specialised individual medical issue because of colonial and postcolonial influence. the intersections between hiv/aids and disability revealed how important disability resources and knowledge can be but disability is not understood enough on an activist, practice or policy level. linked is the false idea that disability rights have nothing to do with greater justice and peace in society. this totally counters the philosophy of ubuntu and functions to make invisible the contributions of disability activism and studies. furthermore, ubuntu reveals that disablement can be physical, social and spiritual and lies in our understandings of what threatens the social order that allows the interpersonal relationships that let us be fully human. when making visible the invisible injustices that disable us, we have not really paid enough attention to how intersectionality as a concept also encompasses more diversity than just impairment orientated towards gender, age, ethnicity and so on. if moral disablement because of negatively perceived difference is a salient feature of disability, it also becomes important to understand how that changes and if and how it becomes connected to injustices that people experience. it also places certain people at social risk or wealth because of what it reveals about diversity of how embodiment is understood spiritually both in negative and positive ways. this opens up a concept of disability linked to a biodiversity and cultural diversity that is not just predicated on bodily types of visible or invisible impairment found in the global north. similarly, if that diversity is experienced as inhuman and a society cannot engage in the moral actions to ensure a change to accommodate ubuntu, then, learning from history, we will begin to see a fight for not just a restorative but a transformational disability politics. ubuntu locates disability politically within the wider environment and practices of sustainability, which are now important to the post-2105 agenda, crpd and the (un) sustainable development goals linked to climate change. the links between disability, rights and ecology in the african context have not been given much attention despite the fact that there are links between environmental degradation and disablement. the nigerian and kenyan examples illustrate how africans have been at the forefront of environmental activism, indigenous rights and ensuring claims to homelands. while they welcomed and used international support, they found ways in which to advocate using their own ideas and they did not need decolonisation. why is this not happening linked to international organisations, funding and legislation linked to disability and the crpd? while the crpd continues to function like a straw man that is never seriously enforced, a different kind of political action linked to social justice seems to be evolving in line with ubuntu. it is noteworthy that environmental actions advocate repair of the natural environment and this includes the well-being of the ecosystem (plants and animals) in what encapsulates humanity. what this biodiversity could mean for disability and ubuntu remains relatively unexplored practically, for example, in terms of our relationships to animals, plants and technology. within disability discourses, notions of repair and reparations for creation of physical and/or mental ill health, chronic conditions, impairment and future generational disablement linked to environmental social justice will gain greater credence, especially with the creation of, for example, biobanks for genomic research in africa (see staunton & moodley 2013). will such efforts lie in tension with the protection of the cultural biological diversity of impairment or will ubuntu, as social ethics, be interpreted in a differing way with regards to disability? while the crpd has a rich mandate and could be translated in terms of ubuntu, disability studies have mainly functioned on a state level or examined lack of inclusion and barriers in institutions or services that leave families and communities, and primarily women and children, to take on caregiving tasks. this has neglected the impact of globalisation and how transnational companies, institutions and services perpetuate inhuman relations or what broader forms of caregiving in terms of animal or ecological relationships could mean and how to ensure their enablement. similarly, disability studies have examined direct impairments caused by armsor conflict-related violence but not indirectly linked to degradation of ecosystems or impact of climate change. for example, disability could also be linked to desecration of ancestral lands, loss of forests or extinction of totemic animals – illustrative of how embodiment is linked to ecological diversity as cultural heritage and humanness. instead, disability is becoming both a restorative and transformational politics by ignoring the ineffective state, for example, in south africa, where mainly former mine workers have been suing transnational mine companies for breaches of health and safety resulting in loss of life, chronic ill health and disability. in the african context, such actions against injustice and links to disability as impairment, will only grow and move towards, for example, factory conditions, child workers in cocoa plantations, or the prison–industrial complex. examining the links between environment and disability will also become inclusive of ‘suffering’ as affecting diversity; in slums, because of a lack of formal and informal opportunities of employment and then move on to questioning lack of infrastructure to ensure cultural and ecological equality, thus attacking the political and economic promises on an international policy level. within an african focus on disability as ubuntu, the dignity of the otherness of another and respect for that diversity is at its heart. anything that threatens a common humanity and individual humanity will lead to a quest for dignity through discourses and practices against this injustice. how africans will interpret this in their terms, for present and future challenges, remains to be seen. it is a challenge that disability studies is taking up in keeping with the dynamism of ubuntu and how we understand what it means to be human. acknowledgements this piece 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accepted: 11 oct. 2018; published: 25 apr. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: empowerment is the generic name for support services for persons with disability in nigeria. in it, the elites of the society play leading roles. special events such as anniversaries, christmas seasons, wealthy people’s birthdays, investiture of new titles and campaigns before general elections often provide occasions for empowerment programmes. objectives: this article explores discourses of empowerment of persons with disability in southeast nigeria. we concentrate on the relation between local elites and the disability community and how it impacts our understanding of empowerment. conceptualising empowerment as worldmaking, and disability as something that is ambiguous, we challenge the assumption that the aim of empowerment of disabled people is to improve their (disabled people’s) quality of life. method: this article relies on research data (collected between january 2014 and january 2017) comprising 72 interviews and participant observations from 27 persons with disability, and 13 social workers and senior government officials. results: we conclude that discourses of empowerment of disabled people frame disability as loss and tend to conceal the personal stories and survival operations of disabled people. conclusion: empowerment discourses ironically provide the platform for local power elites to ‘ride’ to fame on the backs of disabled to extend their influence in society. in the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy. our qualitative data provide opportunities to reflect on the tensions between the ‘local and the global’, thus indicating how disability issues intersect with other wider questions. keywords: mobility disability; empowerment paradox; survival strategy; empowerment discourse; culture; empowerment; igbo culture; local and global; power elites. introduction discourses of empowerment of disabled people frame disability mainly in terms of deficit, and they (discourses) tend to conceal the personal stories and survival operations of disabled people (balcazar et al. 2012; block et al. 2015b; charlton 2000, 2016; purdue & howe 2012). yet, when critically observed, empowerment discourse ironically provides the platform for local power elites to ‘ride to fame’ on the backs of the vulnerable – the poor, the disabled, widows − to extend their influence in society. this concurs with shakespeare’s (1994) statement that the image of disabled people as ‘powerless’ becomes only meaningful if it occurs side by side with the benevolence of powerful elites. in the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy. but it would be misleading to (mis)interpret this strategy in terms of powerlessness. thus, we shall adapt the notion of ‘paradox’ to open lines of discussion of how a sociocultural practice that (re)inscribes the ‘powerless’ image of disabled people while strengthening the influence of local elites could be framed as ‘empowering’ to disabled people.1 this article explores discourses that shape disability support among the igbo people of southeast nigeria, focusing on relations between the elites of igbo society and people with disability and on how this relationship impacts our understanding of empowerment. overall, this article explores the inconsistencies between discourse of empowerment of disabled people and disabled people’s lived experience of disability. through a perspective of disability that privileges resistance rather than suffering and lived experience of disability instead of pessimism (block et al. 2015a:361), this article frames disability differently, as a ‘regenerative force’ instead of shutting down of possibilities (block et al. 2015b). instead of thinking about disability in terms of binary opposition, pathology or ‘loss’, our goal is to present disability in terms of full range of experiences that are shaped by sociocultural values, personal context, a family’s economic situation, environmental barriers and everyday assumptions (block et al. 2015b:4). it should be noted that the term ‘empowerment’ is used loosely in this article, and hence this article is not about empowerment of disabled people but rather about the use of the discourse of empowerment. the research that informs this article derives from a broader ethnographic project involving interviews, observations and archival studies; embedding in the networks of the disability community; and visiting rehabilitation centres and government departments, including attending ‘empowerment’ programmes. the fieldwork was conducted by the first author between january 2014 and january 2017 among the community of people with mobility disabilities in southeast nigeria. the research sought to ask a broader question about how embedded cultural notions about disability connect with the discourse of empowerment of disabled people and how this idea of empowerment plays out in southeast nigeria. for the purposes of this article, we are ‘reading’ empowerment discourses through the lens of igbo worldviews. southeast nigeria has a population of about 30 million people and is both culturally and linguistically homogeneous. nevertheless, there are six states in the southeast geopolitical zones with divergent ‘empowerment’ programmes for their respective disability community; thus, findings of this article cannot be generalised beyond the terms and local characteristics of the study participants. second, ideas of the sociocultural forms and functions of empowerment cannot be generalised beyond the nigerian context. although study participants found it difficult to communicate the meaning of empowerment as disability support, they often took refuge in the word (empowerment) when they wanted to communicate an important point about disability support, using their hands to gesticulate the sign of an airplane lifting from the ground on take-off. this is something which has been noted in the scholarly literature (papp 2016), drawing attention to the contrast between discourses and reality. disability and the struggle over definition for nora groce (1999), disability is the umbrella name that unites people with diverse forms of impairment. but then disability is more than a body that does not function with 100% efficiency (campbell 2009; kasnitz & shuttleworth 2001), and it is less about practical challenges than the kind of image it evokes in mainstream thinking (devlieger & balcazar 2010). this line of thinking provides armour to social model researchers (barnes 1997; oliver 1992) to argue that disability cannot exist without interpersonal relations and systems of power structure.2 the world health organisation (who) (2011) frames disability in vague terms as a complex, dynamic, multidimensional and (even) contested human condition. but barnes and mercer (2011) tend to read politics into the who approach, arguing that the struggle over definition is to isolate and quantify the range of challenges facing the individual for purposes of disability support. yet the struggle over definition rages on. however, disability has travelled a long way in public discourses since the 19th century. for example, devlieger et al. (2003) wrote that the notion of handicap was initially invented as a name for the disability community. the term was first introduced earlier in the united states, reaching europe after world war ii. ngos later appropriated handicap, perhaps because of the ideas of not only ‘equal chances’ but also ‘helplessness’ that it evokes. the concept of ‘disability’ was later ‘invented’ to mitigate the negative connotation of ‘handicap’. yet those who invented ‘disability’ – less or not able – may not have foreseen the negative connotation the word would generate. there is, thus, a sense that the notion of disability is a historically constructed concept. pieter verstraete (2012), following michel foucault (2006), believes that the framing of disability has mostly benefited from the thinking of those who are not disabled. for example, in his ‘history of madness’, michel foucault identified the evolving and historically fluid nature of disability. he successfully demonstrated that what constitutes (mental) disability changes over time. again, in the same context of intellectual disability, devlieger (2003) documented a movement from ‘idiot’ to ‘feeble-minded’, and finally to the more acceptable ‘mental retardation’ and ‘person with mental retardation’ and currently ‘person with an intellectual disability’ in the american discourse. the system of naming and re-naming the infirmity is probably to suit the contemporary times, dissolve the difference and create a semblance of sameness between the disabled and the dominant group (devlieger, rusch & pfeiffer 2003). we shall rather argue that disability could be ambiguous, complex and an ‘unconventional’ way of being in the world that seems to offend the normative way of being in the world. thus, disability is not a human condition that invites a simple solution. disability and empowerment are two sides of the same coin where one means the opposite of the other. empowerment rhetoric was very popular among the elites and international organisations as a one-size-fits-all ‘methodology’ for fixing social and economic marginalisation of the disability community. several decades later, disability support is still ‘packaged’ in empowerment rhetoric in the local world. it is the history of empowerment discourse that we shall now address in subsequent sections. historicising empowerment discourse empowerment first appeared in written communication in the mid-17th-century britain with a meaning that suggests ‘delegated authority or authorisation to act’ (wehmeyer & cho 2010). but most scholarly works, such as hur (2016) and calvés (2009), associate the most recent resurgence of empowerment discourses to the work of the brazilian educator and philosopher paulo freire (1921–1997) in his ‘pedagogy of the oppressed’ (1993). although many authors reference freire’s pedagogy of the oppressed as foundational to contemporary ideas of empowerment, he did not use ‘empowerment’ in his work. rather, the terms ‘liberation’ (used 48 times) and ‘conscientisation’ (critical reflection or awareness) were among the high-frequency words in his book. thus, these scholars probably referred to freire’s thoughts on ‘pedagogy of the oppressed’, firstly, as an example of how empowerment might be operationalised, and, secondly, to his audience (the poor, marginalised segments of society), as the target audiences of empowerment discourse. there are yet other sources of empowerment discourse. calvés (2009) wrote that current ideas of empowerment also benefited from feminism, liberation theology, black power movement in the united states and gandhism. along that line, cornwall and brock (2005) link the history of empowerment to christian rights movement, new age self-help manuals and business management. yet again, none of these historical sources specifically included the word ‘empowerment’ in their discourses that deal mostly with self-reliance. rather, ‘empowerment’ was just an idea or interpretation of those discourses, suggesting that in these discourses empowerment was probably a label to give meaning to an idea. in the last three decades, empowerment was the ‘in’ word among international development organisations, and other state actors, as it became the focus of many studies in the international development community. such was the popularity of the concept that funds were committed to studies (e.g. hennink et al. 2012; jupp, ibn ali & barahona 2010; narayan 2002) on evaluation and measurement of empowerment as a ‘methodology’ for speaking for oneself. although empowerment has been a topical issue since the 1990s, scholars have only recently begun to critically (re)examine its claims for the quality of life of those found at the margins of society. this effort was initiated by the work of cornwall and brock (2005), cornwall (2007a), cornwall and edwards (2010) and eade (2010). the following three illustrations complement these efforts. firstly, since 2000s most empowerment researchers have begun to think differently about empowerment. for example, forrest (2000) suggested that ideas of empowerment had gained such purchase in the public imagination that they now appeal to the interests and purposes of both the ‘rich and powerful and poor and powerless’ alike. pettit (2012) described how empowerment functions at the level of rhetoric especially to spice up policy documents and public communication among powerful elites while preserving the interests of the same elites along the structures of power relations (foucault 1982). secondly, empowerment rhetoric is often expressed as ‘social medicine’ and a ‘methodology’ for exiting poverty and social and economic marginalisation (eade 2010; sugar 2015). there is a sense that ‘a dose’ of empowerment is needed to ‘cure’ or reverse social and economic exclusion of those at the fringes of society. however, cornwall and edwards (2010) argue that this approach amounts to oversimplification of the multidimensional issues of both poverty and economic marginalisation. lastly, baistow (1994) posits that the extant literature often frames empowerment as an ‘external force’ or as something that someone does to others to ‘empower’ them. thus, there are those who ‘empower’ others – social workers, health visitors, nurses, community psychologists, politicians, local elites and wealthy people, and those who receive empowerment – the poor, clients, patients, employees and disabled people. this perception creates a sense of binary opposition in the mainstream imagination about a world divided between the powerful and the powerless, between givers and receivers. this line of reasoning also misses the point on foucault’s perspective on power that aligns it more closely with discourse (foucault 1982). methodology miles and huberman (1994:5) admonish that qualitative enterprise is more a craft than slavish adherence to ‘methodology’. this entails that the rules of common sense and innovation are the hallmark of qualitative research. the methodology of this article consisted of fieldwork grounded in anthropology, an approach that facilitates holistic access to the field through close participant-observation, occasional interviews and archival study. study participants consisted of 28 persons who identified as disabled persons (23 men and 5 women), and 12 non-disabled persons whose work brings them in daily contact with disabled people. in total, we conducted 38 semi-formal interviews and observations (and occasional participation) involving 10 men and 4 women with disability, and additional 14 informal interviews and observations involving 13 men and 1 woman with disability. we conducted a total of 19 semi-structured interviews with 12 non-disabled persons whose work connects with the empowerment of disabled people – disability services, rehabilitation, disability support and igbo culture about disability. the non-disabled persons comprised social workers at government ministries, a medical doctor, one director of a prosthetics workshop and his assistant, another director of a rehabilitation centre who owns a secondary school that hosts children with a mobility disability (and their assistants), a parent of someone with a mobility disability and two old men who are knowledgeable in igbo culture. their various roles contributed to addressing issues raised in the research. for purposes of confidentiality, and personal terms of study participants as a vulnerable population, we decided to shield their real names and (in some cases) actual location of study. our interviews with social welfare officers and elites are mainly related to the policy side, government efforts and how they viewed their work. we also visited a rehabilitation centre (for persons with mobility disability) and government ministries overseeing disability issues, where we observed and asked different sets of questions relating to services for people living with disability. during interviews with senior government officials or big politicians, we often listened attentively and made a few notes because we did not receive permission to audio record. one senior civil servant in the ministry of education cancelled an interview when a request was made to audio record him. initially, new study participants were recruited through a snowball technique: one participant recommended someone she or he knew. we soon realised that this technique did not often work as planned because the new study participant might not be well disposed towards the research. as the research progressed, we began to make our own decisions about subsequent research participants focusing on those with sustained interest in the research, availability and willingness to share their experiences. we could meet someone with a mobility disability, and then open a conversation with him or her. if the person was interested in the conversation, then we could make an appointment and the conversation could continue. there were some study participants we met only once, and we did not have the chance to meet for a second time. occasionally, some study participants, who did not understand the nature of the research, thought we were philanthropists, out to distribute money. the first meetings were often awkward and full of suspicion on the participant’s side, and (often) an anticipation that the researcher had come to ‘help’. the researcher often introduced himself with a ready-made story about the research and its relevance to the disability community (russell 2011:3), informing the listener that the project will produce data that would be made available to well-informed decision-makers about disability policies and programmes for the disability community. after this the researcher requested the research participant to introduce himself or herself. then the interview began like a conservation with the purpose to relax the interviewee. during the interviews, carefully listening while taking occasional notes or recording the interviews (only with the permission of the interviewee) were regularly used practices. anthropological data analysis follows the interpretive tradition in terms of meaning construction that taps into peoples’ subjective experiences (russell 2011). the preparations for data analyses commence in the field and are ongoing throughout a process of reflexivity, that is, making decisions consciously and evaluating them. miles and huberman further advise that researchers usually adapt their methodology to peculiarities of the research setting through the lens of the conceptual frameworks of the study which evolved gradually during the process of data collection. the onus is on the investigator to faithfully render the process followed in the data analysis. focusing on incidents (what happened in the story not the story), we did an iterative (re)reading of research data files in line with conceptual leaning of the research and the research objectives. having identified the research question, we returned to the files (interviews, observations, documents reviewed) to classify the key words in line with the research objectives and conceptual frameworks of the study. this approach makes it easier to match the data with different parts of the research objectives. in this article, our key words are the themes of ambiguity and complexity of disability, empowerment as worldmaking and the igbo worldviews on support for those whose living condition is associated with the margins. occasionally, study participants received cash rewards. although supplying data for the research, most of them did not fail to mention their personal financial challenges. one of the wealthy study participants raised issue with the first author because he did not give him some money. this sceptic study participant kept supposing that the ‘whiteman’ gave the first author a lot of money for the fieldwork and he was entitled to a slice of the cash. gaining the confidence of study participants was a gradual process, and when this happens, they tend to enlist the researcher into their cause, detailing all instances and experiences of disability oppression in their area. in all cases, female study participants were more open than male study participants. part of fulfilment in the field comes from hearing that some of the study participants nicknamed the first author ‘disability police’, that is someone who fights for the interest of the disability community. ethical consideration the self-funded doctoral research of mr o.v. nwokorie did not go through any procedure because the university of leuven does not impose ethical clearance on research that is conducted without external funding. rather, mr o.v. nwokorie took specific steps to adhere to ethical guidelines of anthropological research as outlined in american anthropological association ethics guidelines for field research on the use of human subjects as reported in the edited work of robben and slukka (2007). the guidelines provide for issues of full disclosure (in terms of competing interests), informed consent and protection of the identity of study participants. these were all observed during the conduct of the research. mr o.v. nwokorie travelled to the research site with a letter of introduction provided by prof. p.j. devlieger and copies of the consent form. the consent form proved to be an obstacle during the fieldwork because the study participants viewed it with suspicion. as a compromise, the consent form was verbally explained and agreed upon by the study participants. situational context: igbo people of southeast nigeria and the igbo worldview (uwa ndigbo) the practice of empowerment discourse links with igbo culture. the igbos of southeast nigeria are well-researched people (cookey 2005; iroegbu 2005; nwagbara 2007; stevenson 1985). nwagbara (2007) outlines three different senses of the word igbo: firstly, the igbo territory; secondly, the domestic speakers of the language; and finally, the language spoken by them. although igbo people have experienced some continuities and changes since their first contact with the larger world, there are certain aspects of their worldview that are resistant to change. as we show here, there are few aspects of everyday life that are not influenced by the local worldview. the concept of worldview or cosmology opens lines of discussion about how people make sense of the world around them including their relationship with neighbours and their natural environment. viewed from material, spiritual and sociocultural ramifications, the igbo worldview is given meaning by igbo cosmology which provides an explanation for how the world is ordered. nwagbara (2007) and nwoye (2011:306) conceptualise igbo cosmology or worldview as a system of prescriptive ethics, which define what the igbo ought to do and what they ought to avoid, including the system of action which reveals the codes of conduct. thus, worldviews are ‘products of experiences so pregnant with drama’ that such experiences give rise to symbols or totems of some sort. the worldview helps to make sense of reality, events, space-time, the environment and how to exert control over them (nwoye 2011:306). nwoye elaborates: […] a worldview can be understood in terms of a unified picture of the cosmos explained by a system of concepts, which order the natural and social rhythms, and the place of individuals and communities in them. in other words, a worldview reflects people’s basic assumptions and perceptions of the world, which give orientation and value to their lives. a people’s worldview stands for their source of explanations for the ways things are in the world, including their theories of illness, death, and misfortunes, and how human afflictions and problems can be resolved. (p. 306) nwagbara (2007) modified it a little through the introduction of spiritual dimension and ‘prescriptive ethics’: the igbo world, uwa ndigbo, viewed from the material, spiritual, and socio-cultural ramifications, is made intelligible to the igbo by their cosmology, which explains how everything came into being. it is through their cosmology that the igbo know what functions the heavenly and earthly bodies have and how to behave with references to the gods, the spirits, and the ancestors […] two aspects of the igbo cosmology namely: cosmology as a system of prescriptive ethics, which defines what the igbo ought to do and what they ought to avoid; and cosmology as an action system, which reveals what the igbo do as manifested in their overt and covert behaviour. (p. 103) in general, a worldview is rooted in cultural assumptions or what clifford geertz (2009:164) considers as a web of significance that man has spun around himself. the notion of assumption implies a shared unifying conception of a given society or group through which that society or group makes sense of the world around them (salazar 2013; vaughter & alsop 2017:130). the worldview represents the basis for action, social relationships, and provides explanation about everyday occurrences. it ensures the maintenance of stability in society while guaranteeing the setting of boundaries of social mores. the igbo worldview has a bipartite structural relationship between the spirit world and the world of the living. that worldview is founded on the assumption of a dual traffic between the two worlds. igbos consider it inevitable that those living in the world of the living are expected to transit to the world of the spirits. however, when someone joins the ancestors too early, then the people worry and attempt to make enquiries. the igbo worldview views the world as something that is in process of attaining equilibrium, and not a ‘natural order that goes according to a master plan’. consequently, deities, spiritual forces as well as human beings and social relations are subject to manipulation. nwagbara (2007:104) wrote that occurrences, such as excessive rainy season, drought, business failure, ill health or whatever threatens the life or security of an individual, are ‘interpreted by the igbo as a sign or warning that things must be set right before they get out of hand’. as we discuss later disability is one of such occurrences with abiding significance among the igbos. disability in igbo culture there is no igbo language equivalent for ‘disability’. a person with impairments (nkwaru) is either addressed after the impairment type (e.g. the blind person ‘onye ishi’, the lame-disabled ‘onye ngworu’, the mentally disabled ‘onye ara’) (ingstad & whyte 1995:7), or may also be addressed by the generic name of impairment – ‘onye nkwaru’ (a ‘dented’ or ‘unwholesome’ person)3. the importance of ‘wholeness’ in igbo cosmology means that congenital disability carries a stigma. igbos view an impairment as a ‘misfortune’, especially where the aetiology of that impairment has spiritual roots (ingstad 1999:757), but they do not discriminate against disability explicitly. however, they place different values on people who have and do not have a disability. in extreme cases, the igbo worldview (uwa ndi igbo) regards people with disabilities and their possessions, including the words they speak, as ‘dented’ (asosara ya ihe) – such as might be found on a car after an accident.4 hence ‘one cannot envy a person with disability, even if wealthy’ (anaghi agbabiri ya okpo) (eskay, eskay & uma 2012; eskay et al. 2012; lang & upah 2008). two elderly informants reported that someone with a disability may not be invited to officiate in a sacred ceremony because ‘their thinking is not clean […]’. because their disability is viewed in terms of ‘impurity’ while ‘wholeness’ is a source of consolation among the non-disabled: the disabled may be rich and richer than others, but there is a difference that invites ‘sorry’ to the disabled. as in the case of ritual libation, where a vote of thanks is required. a disabled person cannot officiate in such a program. if he does, the prayer will stand suspended. in omenala ndi igbo (igbo tradition), you cannot call a disabled person to pray for progress that would reach god. it is only a complete person that can call on god the maker of heaven and the earth. that is the way it is done in igbo land in the past. (ifeanyi nwosu, interview, 17 february 2016) the notion of ‘suspension’ is indicative of how igbo culture places the disabled within the boundaries of a contextual identity (reid-cunningham 2009; titchkosky 2009:250–251; turner 2009). however, there is a government campaign to change hearts and minds on how mainstream culture relates to the disability community. empowerment and igbo language there is no one-to-one translation of empowerment in igbo language. the two closest words nwulite – which translates as ‘lifting-up’ (just as when the air plane lifts from the ground on take-off), and nkwado – a kind ‘support’ or ‘help’, play leading roles in the conceptualisation of empowerment. the disability community prefers nwulite, believing that education, a job, and money can supply this kind of lifting power. this frames empowerment as an external force or as something that is done to someone by others to ‘empower’ them (baistow 1994). however, the mainstream conceptualisation of empowerment as nkwado seems to align with the igbo worldviews about supporting someone whose living condition is associated with the margins. for example, a senior staff of a government ministry defined ‘empowerment’ as ‘an assistance the society gives to someone with a disability because of the recipient’s limitations or inability’. study participants were asked questions such as ‘what comes to your mind when you hear the word “empowerment”?’ their responses aligned with ‘what someone does to someone else’ (baistow 1994), such as sponsoring someone in a business, offering them money or jobs and so on. ‘(re)-reading’ empowerment one might be misled by these responses to conclude that the respondents lacked the capacity to act (balcazar et al. 2012; charlton 2000). these responses seem to undermine other sources of data on how disabled people resist oppression and try to assert themselves in everyday life. for example, when we listened to some of their personal stories, we often ‘read’ self-assertion, civil disobedience and resistance against oppression (balcazar et al. 2012; charlton 2000, 2016; freire 1993). citing the case of john, we show below that the general views on empowerment expressed above are not always accepted in practice by those in the disability community who are on the receiving end of sympathy and ‘empowerment’. john was born about 65 years ago, before the current advances in western medicine in igbo land. he was born prematurely and wrapped in bandages for 7 months in an incubator. the treatment curtailed blood circulation to parts of his leg. thus, his right leg looked weak and the other leg seemed lifeless, and presently, he uses a walking stick to support his wobbling legs. he has a primary education and works in the local government as a messenger. although he boasted that there was no question about disability that he could not answer, we could tell when he was not sure of his response to a question, for example, when he dismissed a question about the united nations convention on the rights of persons with disabilities [uncrpd] (united nations 2006). although john argued that disabled persons deserve ‘sympathy’ from the society, he was nevertheless very assertive and often spoke his mind in public. this informant gave an insight into his gradual development: when i realised that people do not have respect for disabled people, i started dressing very neatly. then one day: i went to see the chairman [sic] of our municipal council. the receptionist tried to frustrate me, saying that the chairman was busy with someone. after waiting a long time, i decided to let myself in. i said to myself, ‘since the chairman is in a meeting with a human being like myself, i must go and join them’. when i opened the door, i was surprised to find the chairman alone. he too, was shocked to see me there. (john, interview, 12 january 2016) john’s story and experience indicate the original nature of empowerment discourse operationalised as a product of ‘critical awareness’ or ‘conscientisation’ (freire 1993:35–37), ‘resistance against oppression’ (charlton 2000:5), ‘survival operation’ in the context of disability (charlton 2016:59) and civil disobedience as in ‘occupy wall street’ (block et al. 2015b:9). john also observed that many young persons with a disability were struggling because they did not want to ‘learn’ from experienced disabled persons like himself. he considers himself as ‘expert’ in disability experience, especially in tackling elites: if big men (rich men) want to give a disabled person something, they make it difficult. but i do not get discouraged. i follow them up persistently until they get tired. i have many strategies of following big men. for me, there is time to speak out loud and there is time to pretend as if i don’t know what i am doing. (john, interview, 12 december 2016) in that short exchange, john summed up his vast experience of coping with disability including his tenacity in the pursuit of disability support or empowerment. disability is, thus, a site of knowledge production and development of new skills. in the next section, we present an ethnographic account of the relation between elites and disabled people and how it mediates our local understanding of ‘empowerment’. ethnographic findings in nigeria, empowerment is the latest container word (a lexical item with chains of equivalence or large semantic field) in their political lexicon. the word came with the latest onset of democracy in 1999. the rise of empowerment has two sources, one local and the other international. the local source was the emergence of new elite politicians competing for the heart and soul of electorates. to win elections, politicians deployed impressive and often confusing words on the campaign trail. the international connection with empowerment came with increased activities of the un and international ngos. central to empowerment discourse was the widely circulated international monetary fund (imf) poverty reduction strategy papers (cornwall & brock 2005:1045). the document was crafted in optimistic tones with lexical items that appeal to those whose living condition is associated with the margins. from then on, the word caught on and became an everyday word especially among politicians and the person in the street, further highlighting the dialectics between the ‘global and the local’ (to be addressed in the conclusion). nigerian political elites frequently frame disability support in terms of ‘empowerment’. ‘empowerment’ activities diffuse over various stakeholders using various strategies and creating new spaces. recently, the governor of a state framed his commercial vehicle loan initiative for loyal party supporters as ‘governor […] youth empowerment program’. in another case, a local politician introduced ‘medical empowerment’ for residents of his local constituency. the ‘medical empowerment’ is a 1-day free medical consultation for members of his constituency. wives of politicians (especially governors) occasionally distribute prosthetic limbs for free to a select group of mobility disabled people. as we elaborate later, politicians organise empowerment to bring development directly to the people, to ensure that everyone benefits from the government or from the politician organising the empowerment event. most politicians use the end of their term in office to organise empowerment for their constituents, to remind people that another election is fast approaching. in the following, we have itemised the spaces of empowerment discourses in igbo nigeria. political campaign tool in nigeria, empowerment discourse is most popular in the arena of politics. thus, politics is currently the biggest ‘business’ in nigeria because winning an election comes with unfettered access to surplus public finances given the thinking there that public finance does not belong to anyone. from the local municipal election to bigger state and nationwide elections, politicians do not ‘leave any stone unturned’ during elections. extremely wealthy elites, locally referred to as ‘money bags’, often sponsor young and promising men and women into elective offices. there is often an understanding that the young politician would protect their interest on winning elections. that is why political elites also organise empowerment for the general population and disability community during the approach of general elections. below, we give an ethnographic account of the relation between elites and disabled people and how it mediates our understanding of empowerment (figure 1). figure 1: youth, medical and private-initiative ‘empowerments’ programmes. ebere is a dark-skinned, middle-aged man of 40 years living with a mobility disability because of impairments in his right leg. during this meeting, he wore a handsome look in faded ill-fitting brown trousers, leaf green shirt and a light orange winter overall. on his feet were a pair of brown boots that belonged to the nigerian youth corps – young nigerian university graduates in compulsory 1-year national service.5 his village was a rural deserted community located on rocky terrain. he volunteered to share some of his experiences of an ‘empowerment’ programme. when first contacted on the phone about this meeting, the energy from his excitement was obvious. his first question then was, ‘where can i meet you?’. ‘where can i meet you?’ meant that he took the initiative, although he had problems with walking. it seemed that he was anticipating some disability support.6 however, the first author responded that he would rather come to meet him. ebere was eating spaghetti mixed with a milky substance when the first author arrived in his family compound the next day. there was another man standing at the background – probably his bodyguard.7 ebere’s compound was built on a stony terrain. it was made up of a group of weather-beaten houses on either side of the narrow path. ebere’s family house was hidden on the right side of the compound. it was a mud house coated with cement and roofed with corrugated iron sheets. the meeting took place under a tree in front of his house where he erected his ‘shop’. his wares were displayed on two tables. they consisted of light articles like biscuits, sachets of cowbell milk, groundnuts, spaghetti, cigarettes, local gins mixed with roots in two bottles, three bottles of 3-3 lager beer with two bottles of 7up soft drink in a small bucket. on the ‘entrance’ of the ‘shop’ were worn out clothes displayed on a line of rope. ebere belongs to the network of members of the disability community who followed information about ‘empowerment’ programmes. his attendance at such events depended on certain calculations about means and costs of transportation to the venue of the programme. ebere had benefited from many ‘empowerment’ programmes, but the most memorable was the one organised by the ruling political party, shortly before a recent general election. the local ward chairperson of the political party, who lived across the road from his compound, selected him for the ‘empowerment’ programme. this was how ebere narrated his experience of the empowerment programme: when i reached mata delarosa (venue of the programme), i saw many people entering there. then i entered the big church and prayed. i said, ‘oh god you know the reason they have invited me here. help me today to get something good today’. when i came out, i saw many things: grinding machine, tricycles, generators, motorcycles, tailoring machines, wheel barrows, and other items. then after some time a member of the federal house of representatives (elected politician) came and encouraged us to continue to support the ruling party. then they started calling names of people beginning from university graduates. after that, came the turn of people doing private business who did not have enough money to run their business. each name was called and given a bank cheque. the first group was given 100,000.00 naira (about 250 eur). then second group received 50,000.00 naira (125 eur). then they called my name and gave me a cheque of 50,000.00 naira. i was so excited that i almost lost the cheque. then my brother followed me to cash the money from the bank to buy some things needed to complete my marriage to my wife. (ebere, pers. comm., 26 february 2016) the empowerment programme was a win–win situation for the political party and the recipients, especially given the approaching elections. although the political party was hopeful that recipients of the empowerment would reciprocate them during elections, the money ebere received afforded him the resources to complete his marriage rites. as someone whose ‘one leg does not touch the ground’ (as he reported about himself), it was important that he married a lady who would complement his disability. in contrast, 35-year-old edwin, who comes from the same village as ebere, wondered why his name was omitted in the empowerment programme for which ebere received money. by that he seemed to be questioning the criteria used to make the selection for beneficiaries. however, the question goes deeper than that because it was representative of all empowerment programmes studied during the fieldwork. however, in the case of this empowerment programme, it was at the discretion of the person doing the selection to nominate their preferred candidates. it seems that edwin had been losing out in empowerment programmes, or he had been attending the wrong ones, because he recounted an experience of ‘empowerment’ in which he was only served snacks and coca-cola and told to go home. although a lot of items were displayed, the distribution was marred by confusion: on that day, no one took us seriously. if you do not have someone in government, no one listens to you. many disabled people came, and many things were made available, but only those who have a representative in government received something. at the state capital, the organizers told us that our own share of empowerment would be sent through our local traditional ruler. after that, we didn’t hear anything about the money. we only got coca-cola and about 15 of us received one bag of rice with a few tins of tomato. (edwin, pers. comm., 28 february 2016) for disabled persons such as edwin, many factors still count against them. for example, he did not belong to the organised disability movement. he was one of the people who prefer to isolate themselves from the organised disability community because of the organisation’s financial demands, especially the monthly dues. they are cut off from the flow of information circulating within the disability community. the network of the local disabled people’s organisations (dpos) enhances circulation of information through the mobile phone. information technology makes the disability movement very mobile in mobilising themselves for ‘empowerment’ programmes. the speaker’s empowerment is another example of the use of empowerment as campaign tool. the organiser of this empowerment was the speaker of the state house of assembly. this empowerment was a response to the earlier one because it was organised by a rival political party. he staged the empowerment towards the end of his tenure to hint to his constituency that he was still in politics. to ensure an equitable representation, recipients of his empowerment programmes were composed of selected individuals from each of the communities within his constituency, market women, town unions and organised disability groups. incidentally, this empowerment raised so much controversy and remained unresolved while the first author was in the field. there were lots of complaints by disabled and non-disabled people who reported that they were omitted in the sharing of the money. however, the focused local disability organisation refused to be intimidated. this is how the secretary of the local disability organisation described the event: we received a letter that the speaker (of the state house of assembly) was going to empower people. the letter said that we need to make our own application so that we can benefit in the program. then we made our application. we came to the venue of the program (local government headquarters) before 10h00. many things had been made available before then. about 13h00 the mc (master of ceremony) announced that the speaker would soon arrive with commissioners. when the speaker arrived, his commissioner friends praised him (the speaker) that he is a true son of this community. that was why he has come to empower the poor, widows, the youths and disabled. then people asked the speaker about his next political ambition, but he refused to answer that question. the mc began to call a list of names of people to be empowered from community to community. then he called us (the disability community). i came forward and received an envelope […]. (magnus opkara, interview, 10 december 2016) then he took the envelope with a cheque for 500 000 naira (about 1200 eur) home and later secured the money in the bank. soon the money became the source of acrimony within the local community. this was because everyone became interested in the money, especially those who did not belong to the organised disability group. the social welfare officers who worked at the local municipality wanted to supervise the sharing of the money but the local dpo refused. many people felt offended because they were omitted in the sharing of the money. but perhaps the money generated some dust because disabled people were involved in the sharing of the money. there was probably a sense that they were incapable of organising things properly or because they organised the sharing of the money equitably. the first author stumbled on this story late during the fieldwork on the day he visited the social welfare officer at the local municipal council. the social welfare officer was not in the office. then the receptionist directed him to another social welfare officer who uses a wheelchair, and whose perspective added value to the controversy surrounding the speaker’s empowerment money. he (the wheelchair user) was the secretary of the local dpos during john’s tenure, and must have lost out in a power struggle. but the first author did not form those thoughts into words. when the first author probed deeper, a few of his grudges were divulged: there is problem with the authorities and there are issues with the disability community as well. earlier, there used to be some understanding between the dpos and the social welfare office here, but the way the speaker’s empowerment money was shared created lots of problems. the government does not seem to pay any attention to their plight, and again, the disability community is often violent because they often feel cheated. (clement ogu, interview, 12 december 2016) orji, the secretary of the local dpo later, narrated the genesis of the quarrel in more detail. he accused the social welfare officer of short-changing them in the sharing of bags of rice they received at one empowerment event. secondly, the dpos argued that the welfare office did not play any role in the application that yielded the speaker’s empowerment money. apparently, the social welfare office saw themselves as stakeholders in the sharing of the speaker’s empowerment money. they had hoped to get a share from the money whereas the money was a donation to disabled people. currently, the disability community members were paying a price for their new-found ‘independence’, as they currently organise their things without input of the welfare office. previously, the local social welfare office sponsored their ‘empowerment’ trips and benefited from proceeds of those trips. but all that changed after the speaker’s empowerment money was received and shared without the input of the social welfare office. from local experience, the social welfare office had sought to go beyond supervision of the activities of the local dpo to ‘colonise’ them by, for example, deciding on the mode of sharing the speaker’s donation, and telling the disability community how to run their organisation. the thinking that disabled people ‘need help, and protection’ (shakespeare 1994) means that the social welfare officer forgot that many members of the local dpo were heads of families and fathers who make decisions in their homes. one study participant reported that disabled persons know who respects them and who does not. what counts as ‘empowerment’ or disability support is not the primary source of income for most disabled people, but an additional source to agument their regular sources of income. but everyone (disabled and non-disabled) is interested in that additional income. extension of the igbo worldview on support for the less privileged – oji ngaji eri cheta onye ji aka oji ngaji eri cheta onye ji aka, a proverb that means ‘those eating with an iron spoon should remember those eating with hands’, is igbo culture-sensitive means of helping those living at the margins of society. empowerment, at the level of the state, is an occasion to first label the disability community as the ‘less privileged’, and then show that the government cares for people with a disability. for example, a civil servant in one government ministry overseeing disability issues reported as follows: when the government decides to do ‘empowerment’ for disabled people, the commissioner of the relevant government ministry receives a circular from the office of the governor. then the government publicises the event through the electronic media. they also send invitations to organised disability groups through the welfare offices in the local municipalities. the local municipalities also organise the transport (often buses) for the disability community attending the event. (ignatius onyegbula, interview, 18 november 2016) after the governor authorises the ministry responsible for disability issues to ‘do empowerment’ for the disability community, the accountant-general releases money to the ministry officials who place orders for the material items, such as cooking stoves, grinding machines, wheelchairs and walking sticks. however, one informant complained that the disability community is rarely consulted at the planning stage of ‘empowerment’. again, most of the items purchased were of sub-standard quality. before the start of the empowerment programme, government officials make speeches, in which they first ‘console’ the disability community (also known as ‘special citizens’) and tell them to be courageous in their ‘adversity’. secondly, they remind them that the government has not ‘forgotten’ them. after the speeches, a member of the disability community often gives a vote of thanks, praising the government for remembering ‘disabled people’. after that, food and drinks were served. usually, those who attend government empowerment programmes outstrip available provisions. thus, the commissioner in charge of the government ministry uses her or his discretion to draw a list of beneficiaries in advance. in principle, the ministry holds a file with names of applicants who had earlier requested disability assistance; however, the commissioner, politicians, senior government officials, persons connected to the governor, elite disabled persons and executives of the organised disability community also have their own ‘candidates’ who need these empowerment materials. at the end of the programme, the same persons who already own wheelchairs also receive more wheelchairs to resell them to those who were not ‘visible’ enough to receive any. a chat with a stakeholder during fieldwork, a senior government official in the ministry in charge of disability matters mentioned that their stores were filled with wheelchairs donated by the japanese government and 40 wheelchairs and 10 tricycles received from agip petroleum. he was awaiting directives from his bosses before distributing the items. in response to a question about how he intended to distribute the donations, he replied that those who donated the items gave specific instructions about how to share them – to airports, hospitals and persons with disability. but he confessed that his superiors had ‘tied his hands’: i went into my file and saw some applications for wheelchairs. i gave it to my staff and told them to compile these names. then i started reaching out to some people who i knew. i have about 20 names of genuine people i know who need these things. my intention was to write their names down and call them and give them the items. but administratively, i am under somebody. when i presented this file to my bosses they told me to wait. when i get these kinds of things, i pass the information to my bosses and they must direct. you can only act when you get their response. that is why some of these things are there, because i cannot take actions on my own and invite them to come and collect. (ogechi onuoha, interview, 22 march 2016) among the persons contacted for the wheelchairs was a certain woman with a mobility disability whom they encountered in a village when he and his boss (the permanent secretary) went to pay salaries of civil servants. on that occasion, the lame-disabled woman could not access the two-storey building to receive her salary. the people helped carry her to the top floor. ‘she did not own a wheelchair’, said our informant, ‘my boss directed me to take her name and phone number so that any time we are sharing wheelchairs, we shall give her one’. but when he spoke to his boss (the permanent secretary) about the donated items, she replied that the commissioner and the governor’s wife were interested in them. what the permanent secretary meant was that the wheelchairs and tricycles would not be distributed without adequate and elaborate publicity. the aim of the publicity was to show that the state is a caring father of the disability community, although the donation came from foreign governments and multinational corporations. the challenge with this elaborate publicity means that elite disabled people, people with ties to government, loyal party members would receive priority in the distribution of the mobility aids at the expense of rural little known, uninfluential disabled people. then our informant promised to inform us about the final decision on how the wheelchair was finally distributed: many people have been calling me to know when they will receive their mobility aids. what i am trying to think is no matter when the distribution will commence, i will still refer to this list. i will tell them that there are some people who genuinely need these things. when you publicise it, you see that there are people who already have and who would still come to collect to add to the ones they have. especially, these big disabled people who are known. when they collect, they go and sell. (ogechi onuoha, interview, 26 march 2016) in their scoping study of disability issues in nigeria, lang and upah (2008) have nicknamed the ‘big disabled people’, as ‘disability elites’. they are (often well educated) people with a minor disability who are well established within the community, and whose disability constitutes little or no hindrance. yet, this category of persons often exploits their disability to maximum advantage, often acting as representatives of those categories of people with serious disability and who live in the villages. thus, reference to ‘big disabled people’ also helps us to understand the phenomenon of disability intersectionality (goodley 2013). conclusion discourse is a means of dealing with a phenomenon through words, written texts, institutions and everyday practices to realise certain assumptions about the phenomenon and to construct it in a particular way (ingstad & whyte 1995:19). in nigeria, discourses of empowerment of disabled people coincide with specific cultural assumptions about disability, prevailing culture-sensitive responses to those at the margins of society, and quest for power and prestige among local elites. thus, disability is something that is both productive and socioculturally functional. the concept sets in motion a process of redistribution and exchange but sometimes also of disappointment. the concept of disability becomes instrumental for the political elite and for the disabled informed elite alike. it becomes an arena of ‘power play’ on which powerful elites superimpose their authority over those the society has labelled as ‘different’. this instrumental role implies that disability is a cultural space that does not only take from society but also gives back something in return. despite these complexities of disability, the image of disability is still trapped in the ‘prison’ of prevailing ideas of otherness and liminal figures. empowerment research has made meaningful contributions to scholarship. this article has abstained from engaging in a debate about what empowerment is supposed to mean or to privilege one definition of the concept over another, or even to downplay the efforts of dedicated scholarship in empowerment research. such pursuit would have been fruitless and unproductive. to do so would have been following a limited approach to the objective of this article – relation of local elites to disabled people. however, empowerment discourse in general is increasingly losing the ‘goodwill’ of many scholars (cornwall 2007b; cornwall & brock 2005; cornwall & edwards 2010), and slipping down the league of ‘renegade’, ‘slippery’ concepts that serve to ‘energise’ positive feelings about the idea of an imagined world (sugar 2015). for example, in april 2017, the german chancellor angela merkel organised a widely publicised event attended by women of influence from all over the world. the theme of the event was ‘the women’s 20: shaping the women’s economic empowerment agenda’. during this work, we did an online search on ‘empowerment’-related stories on the cnn platform, and the search yielded 649 hits on the cnn platform alone. on google search, ‘empowerment’ returned 100 000 000 (hundred million) hits. it seems that the popularity of empowerment draws from the role of the thought or imagination in framing certain concepts which seem to ‘clothe’ the imagination with the raw material needed to create a mind picture about an ideal world in the making (worldmaking) (ogden & richards 1989; west 2005). for critics of empowerment discourse, the concept probably gains part of its purchase as solidarity vocabulary that tends to evoke a specific utopia that whets the appetite of those living in the margins while concealing the politics. discourses of empowerment of disabled people highlight some of the problematics of local−global relations where the local world appropriates global discourses into the local culture (whyte & ingstad 2007). nigeria is part of ‘modernity’, but it is suspended on the balance between the global and the local, between demands of united nations convention on the rights of people with disability (crpd) and culture-sensitive approaches to disability support. although crpd has a binding obligation to state parties such as nigeria, nigeria has no legal provisions for disability support. policymakers often shelter behind the local approaches to disability support when it suits their purpose. ad hoc management of disability issues seems to justify edwin’s question about decision-making processes for disability support. the local situation is compounded by the realisation that the concept of ‘disability’ was unknown in the pre-capitalist igbo society (ityavyar 1987), and it (disability) has no direct translation in igbo language because the concept (disability) does not originate in the local culture. colonial contact introduced hybrid systems of meaning-making that left the local context in a liminal state. reflecting on this point, sachs (2010) wrote that: the campaign to turn traditional man into modern man has failed. the old ways have been smashed, the new ways are not viable. people are caught in the deadlock of development. (p. xviii) this article has shown that in the nigerian context, empowerment aligns with aspects of the local culture about ‘helping’ poor people. in the context of disability, this idea of empowerment conceals personal stories and survival operations of disabled people such as john (balcazar et al. 2012; block et al. 2015b; charlton 2000, 2016; purdue & howe 2012). when observed critically, empowerment discourse ironically provides the platform for local powerful elites to ‘ride’ to fame on the backs of the vulnerable – the poor, the disabled, widows − to extend their influence in the society. in the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy (charlton 2016). however, it would be misleading to (mis)interpret this strategy in terms of powerlessness. this aspect then clearly adds a performative aspect to the disability paradox, namely that people indeed must play along, but moreover that such performance and by extension the empowerment-as-performance confirms that disability is to be understood through an album of images that includes helplessness and thus the need of non-disabled people to help out. acknowledgements the authors gratefully acknowledge the support and generosity of the faculty of social sciences at ku leuven and the anonymous reviewers of this article for their useful comments and feedback. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions this research is conducted in the context of the doctoral research study of o.v.n. the study was jointly conceptualised by both authors. the ethnographic research was entirely conducted by o.v.n. the writing was jointly conducted, with the inclusion of an outside language editor. the division of the work would be 90% work done by o.v.n. and 10% by p.j.d. funding the doctoral study and ethnographic fieldwork were self-funded by the researchers. references albrecht, g.l. & devlieger, p.j., 1999, ‘the disability paradox: high quality of life against all odds’, social science and medicine 48, 977–988. https://doi.org/10.1016/s0277-9536(98)00411-0 baistow, k., 1994, ‘liberation and regulation? some paradoxes of empowerment’, critical social policy 14(42). https://doi.org/10.1177/026101839401404203 balcazar, f.e., suarez-balcazar, y., adames, s.b., keys, c.b., garcía-ramírez, m. & paloma, v., 2012, ‘a case study of liberation among latino immigrant families who have children with disabilities’, american journal of community psychology 49, 283–293. https://doi.org/10.1007/s10464-011-9447-9 barnes, c., 1997, ‘a legacy of oppression: a history of disability in western culture’, in l. barton & m. oliver (eds.), disability studies: past, present, and future, pp. 3–24, the disability press, leeds. barnes, c. & mercer, g., 2011, exploring disability, 2nd edn., polity press, cambridge. block, p., kasnitz, d., nishida, a. & pollard, n., 2015a, ‘critical approaches to community, justice and decolonizing disability: editors’ summary’, in p. block, et al. 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worlds, pp. 1–32, university of california press, london. world health organisation, 2011, world report on disability, geneva, viewed 26 march 2014, from http://www.who.int/disabilities/world_report/2011/report.pdf footnotes 1. paradox or contradiction is a concept that highlights a situation where a proposition, or an idea or programme of action, begins with a sound, logical reasoning, but leads to a conclusion that seems contradictory. the concept has featured in researches in, for example, education (depaepe 2008; lam & kwong 2012), empowerment (botchway & york 2001) and disability studies (albrecht & devlieger 1999). in the field of disability studies, albrecht and devlieger popularised the concept of paradox in their seminal work on ‘the disability paradox: high quality of life against all odds’ (albrecht & devlieger 1999), in which the authors explored the coping mechanisms of persons with serious disabilities who reported good quality of life despite (supposedly) adverse health condition. 2. but there is also the trap of ‘simplifying’ disability solely in terms of binary opposition, ‘us’ and ‘them’ which we tend to avoid in this paper. 3. a devaluing title often used out of earshot. the plural form is ndi nkwaru. 4. during a radio discussion programme, which was organised during this fieldwork, no pejorative language for disability was mentioned. this was hardly surprising because the aim of the public communication is for the purposes of changing hearts and minds about disability. 5. the nigeria youth corps are young nigeria university graduates below the age of 30 years doing compulsory 1-year national service after graduating from the university. 6. it took the study participants a long time to understand that the objective of the study was not to donate money. for this man, the opening sentence – ‘where shall i meet you?’ – seems to prove this point. 7. during the first meetings, many male study participants kept stand-by bodyguards to defend them just in case a fight breaks out. those who could not afford hired bodyguards often relied on family members. the man remained halfway through the interview before he left. abstract introduction methods results discussion methodological considerations conclusion acknowledgements references about the author(s) julius t. kamwesiga department of neurobiology care sciences and society, karolinska institute, sweden occupational therapy school, institute of allied health and management sciences mulago, uganda lena k. von kock department of neurobiology care sciences and society, karolinska institute, sweden department of neurology, karolinska university hospital, sweden gunilla m. eriksson department of neurobiology care sciences and society, karolinska institute, sweden department of neuroscience, rehabilitation medicine, uppsala university, sweden susanne g.e. guidetti department of neurobiology care sciences and society, karolinska institute, sweden citation kamwesiga, j.t., von kock, l.k., eriksson, g.m. & guidetti, s.g.e., 2018, ‘the impact of stroke on people living in central uganda: a descriptive study’, african journal of disability 7(0), a438. https://doi.org/10.4102/ajod.v7i0.438 original research the impact of stroke on people living in central uganda: a descriptive study julius t. kamwesiga, lena k. von kock, gunilla m. eriksson, susanne g.e. guidetti received: 21 sept. 2017; accepted: 29 aug. 2018; published: 29 nov. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: knowledge about perceived impact of stroke on everyday life as well as rehabilitation needs after stroke in uganda is necessary to identify and develop rehabilitation interventions. objectives: to explore and describe clinical characteristics and functioning during the acute or subacute phase and chronic phase, as well as the impact of stroke on everyday life during the chronic phase in stroke survivors in central uganda. method: a cross-sectional observational study was conducted on a consecutively included acute or subacute (n = 58) sample and a chronic (n = 62) sample. face-to-face interviews were conducted to collect demographic information and clinical characteristics. the scandinavian stroke scale (sss) was used to collect clinical characteristics, assess neurological impairment and define stroke severity. the barthel index was used to assess the level of dependence in activities of daily living. in addition, the stroke impact scale (sis) 3.0 uganda version was used to assess the impact of stroke in everyday life as perceived by the individuals in the chronic sample receiving rehabilitation. results: the mean age of the acute/subacute sample was 49 years and 81% had moderate or severe stroke. the mean age of the chronic rehabilitation group was 53 years and 58% had mild stroke. time since onset in the acute sample was between 2 days and 3 weeks, and time since onset for the chronic sample varied between 3 months and 3 years. strength, hand function and participation were the most impacted sis domains in the chronic sample. conclusion: people with severe and moderate stroke were more likely to be admitted to mulago hospital. the mean age in the study sample was lower than that in high-income countries. further knowledge is needed regarding the impact of stroke to develop guidelines for stroke rehabilitation interventions feasible in the ugandan healthcare context in both rural and urban areas. introduction stroke is the second leading cause of death and the third highest cause of disability globally (johnston, mendis & mathers 2009). although more than 85% of people who suffer from stroke are living in lowand middle-income countries, most research, as well as most prevention and intervention initiatives, is facilitated in high-income countries (feigin et al. 2009; johnston et al. 2009; strong, mathers & bonita 2007). the incidence of stroke in africa has increased in the last two decades (owolabi et al. 2015). this increase has been attributed to lack of knowledge regarding stroke and poor control of the increasing stroke risk factors among the population (akinyemi et al. 2009; mensah 2008; njoku & aduloju 2004; owolabi et al. 2015). moreover, infectious diseases are more often prioritised in low-income countries; consequently, inadequate resources are allocated for stroke prevention and rehabilitation (johnston et al. 2009; owolabi et al. 2015). no studies are available regarding assessing the impact of stroke among people in uganda (chin 2012), and this knowledge is essential for the development of care and rehabilitation interventions. people with fatal stroke or mild stroke often do not present to hospitals (owolabi et al. 2015). this introduces a bias in the registration of new cases of stroke as well as in reliable reports of death after stroke. subsequently, studies on population-based groups of people with stroke are lacking in uganda and other sub-saharan african countries. a substantial number of patients with stroke receive their initial care in mulago national referral hospital in kampala; the admission records reveal that every month 22–30 people receive their initial care after stroke onset in the neurology ward (chin 2012; kwarisima et al. 2014). because of long distances from their homes, coupled with poor public transport and heavy traffic congestion in kampala city, many people with stroke experience the onset of neurological symptoms several days before presenting at mulago hospital (chin 2012). as a result, the situation of people living with the consequences of stroke in uganda is, on the whole, sparsely explored (chin 2012), while stroke mortality is 44% (kwarisima et al. 2014). the proportion of people with stroke who attend rehabilitation at mulago hospital has been reported to be low and is probably because of challenges of transport from home to the rehabilitation centre, lack of appreciation of the value of rehabilitation and challenges with resources both at family and hospital levels. thus, it is very important to explore people’s perceived impact of stroke in their everyday life and the need for rehabilitation after the acute phase of stroke, of which there is very little knowledge. we know from previous studies conducted in high-income countries that the impact of stroke on the individual is always unanticipated and the impact, resulting in activity limitation and poor life satisfaction, can be devastating (lai et al. 2003). the impact of stroke for the individual can be assessed by the degree of disability, for example ability to perform daily activities such as self-maintenance, household chores and mobility, which often persists for a long time (norrving & kissela 2013; palmer & glass 2003). research has shown that age, gender, dependency in activities in daily living (adl), lack of social support and medical or psychological factors may affect the impact of stroke (nichols-larsen et al. 2005). old age and co-morbidities such as diabetes mellitus may be associated with low-activity performance in persons with stroke (lai et al. 2002). standardised assessment instruments can be utilised to reliably identify people’s need for rehabilitation after stroke. tistad et al. (2012) found that the perceived needs of people with stroke did not correlate completely with that assessed by healthcare professionals using established standardised instruments. therefore, the perceptions of the individuals with stroke should also be explored and addressed by healthcare professionals. in uganda there is a lack of knowledge regarding how people with stroke perceive the impact of stroke on their lives (nakibuuka et al. 2014). this can be assessed using the stroke impact scale (sis), a recommended measure for use in rehabilitation research that was developed from the perspective of, and with input from, patients with stroke, caregivers and health professionals with stroke expertise (duncan et al. 2003). the sis incorporates meaningful domains of functioning and health-related quality of life into one self-reported questionnaire. the sis instrument has been culturally adapted, translated into the luganda language and psychometrically tested in the ugandan culture (kamwesiga et al. 2016). the results indicated that the sis was a valid instrument (sis 3.0-uganda) that could be used for evaluating the perceived impact of stroke. therefore, this study focused on the clinical characteristics and perceived impact of stroke in order to generate knowledge about the need for rehabilitation by people with stroke in uganda. study objectives the objectives of this study were to explore and describe the clinical characteristics and functioning during the acute/subacute phase and the chronic phase, as well as the impact of stroke on everyday life during the chronic phase in stroke survivors in central uganda. specific aims the following were the specific aims of the study: to describe the clinical characteristics and functioning of people with acute or subacute stroke admitted to mulago national referral hospital in kampala to describe the clinical characteristics, functioning and perceived impact of stroke in a sample of people receiving rehabilitation in the chronic phase after stroke. methods a cross-sectional study design was used. context for the study mulago hospital is the largest public hospital and primarily receives severely ill patients, including stroke patients, from all regions of uganda (population 34.9 million). the hospital is situated 3 km from kampala city centre (population 1.6 million). for further rehabilitation, persons with stroke can attend as outpatients at the stroke rehabilitation centre just outside kampala and at the mulago hospital physiotherapy department located in mulago hospital. at the time of the study, these were the only units providing rehabilitation to people with stroke after discharge from hospital. participants the inclusion criteria for the acute and the rehabilitation samples were as follows: (1) stroke diagnosis in medical records, first or recurrent, confirmed by a computed tomography (ct) scan or clinical assessment, (2) age not more than 75 years, (3) no psychiatric diagnosis, (4) able to understand and respond to instructions in english or luganda, (5) admitted to the neurology ward for treatment for acute stroke or (6) 3 months since onset but less than 3 years post-stroke for the chronic sample receiving rehabilitation. the participants in the acute sample were consecutively identified following admission to the neurology ward within 1–3 weeks after stroke onset. participants in the chronic sample were persons with stroke who were outpatients at the stroke rehabilitation centre or at the mulago hospital physiotherapy department. data collection and instruments a protocol was developed to collect demographic data and clinical characteristics including age, gender, marital status, handedness, number of children, work status, level of education and housing as well as type of stroke, side of body affected by stroke and rehabilitation received. data were collected from september 2013 to april 2015. the first author and a trained research assistant provided both oral and written information about the study to the participants after which they were invited to participate and to sign a consent form. people with stroke who were not able to sign because of current disability could authorise a caregiver to sign on their behalf. information on stroke diagnosis and type of stroke was collected from the medical records. face-to-face interviews were conducted to collect the information on demographic data and clinical characteristics from both the acute/subacute and the sample receiving rehabilitation. the face-to-face interviews were conducted where it was appropriate for the participants to meet the data collector: in the hospital, in the rehabilitation unit or in the participant’s home. the interviews lasted for 45–60 min. scandinavian stroke scale (sss) was used to collect clinical characteristics, assess neurological impairment and define stroke severity in three categories: mild (43–58), moderate (26–42) and severe (0–25) (askim et al. 2016; christensen, boysen & truelsen 2005; luvizutto et al. 2012). the sss is designed to give a score based on the level of consciousness, eye movement, orientation, speech, hand and leg movement, gait and facial paralysis. the sss total score and scores on individual items are reported. the sss has been used extensively in clinical trials and has been shown to have high inter-observer reliability (0.93) and high concurrent validity (0.94–0.98), especially when performed face-to-face (barber et al. 2003). the sss scores range from 0 to 58 points, where 0 is severe and 58 is the total score. barthel index (bi) was used to assess the level of dependence in activities of daily living (adl) (mahoney & barthel 1965). barthel index assesses 10 items of adl: feeding, bathing, grooming, dressing, bowel control, toileting, transferring from chair to bed and back, walking on level surface, and ascending and descending stairs. item scores are summarised to give a range of scores from 0 (totally dependent) to 100 (totally independent). the bi is widely used and has been shown to have high reliability and validity when used for people with stroke (lai et al. 2002). the bi has been shown to be so sensitive that it can detect the onset of a need for assistance, which is of high clinical relevance (wade & collin 1988). adl abilities were evaluated by identifying the total score of bi and then classified into three categories: independent (91–100), with help (60–90) and dependent (≤59). dependent was defined as the need for personal assistance and independent was defined as independent activity performance with or without the use of assistive devices (gill, williams & tinetti 1995). the stroke impact scale 3.0 (sis) was designed to assess the perception of the individual with stroke on functioning in everyday life in eight domains: strength, hand function, adl/instrumental activities of daily living (iadl), mobility, communication, emotion, memory and thinking, and participation. the sis version 3.0 includes 59 items within these eight domains (duncan et al. 2003). the sis aggregated score ranges from 0 to 100; the higher the score, the lower the perceived impact of stroke, that is, fewer problems in everyday life. the sis 3.0 also includes a question to assess participants’ global perception of recovery presented in a vertical analogue scale ranging from ‘0 = no recovery to 100 = full recovery’. the sis 3.0 uganda version (kamwesiga et al. 2016) was used to assess the perceived impact of stroke in the chronic rehabilitation sample only because some of the items in sis concern stroke survivors’ perceptions no earlier than 4 weeks after stroke onset. data analysis descriptive statistics were used to describe the acute and chronic samples (allen et al. 2012) regarding demographic and clinical characteristics, functioning and perceived impact of stroke. the sis aggregated scores in each domain were generated using an algorithm (duncan et al. 1999). the results in the chronic sample receiving rehabilitation on reported impact of stroke were described based on these aggregated scores. ethical considerations ethical approval was granted by the ethical review committee of the uganda national council for science and technology (ethics approval number: hs 703). ethical approval for the study was obtained and renewed yearly. results a total of 120 participants with stroke were included in the study. at the time of the study, 58 participants were receiving acute care on the neurology ward and 62 participants were undergoing rehabilitation at the stroke rehabilitation centre or mulago hospital physiotherapy clinic. it was not possible to contact participants receiving acute care on the neurology ward for follow-up after discharge; the attrition rate was almost 100%. the participants’ demographic characteristics are shown in table 1 and their clinical characteristics are shown in table 2 for both samples. table 1: socio-demographics of the study participants. table 2: clinical characteristics of the participants (n = 120). the majority of the participants in the acute sample were admitted to the neurology ward 1–2 days after stroke onset. the acute sample had a mean bi score of 51, and 88% were dependent in the performance of adl. the majority (81%) of the acute sample had moderate to severe stroke according to the sss, with 40% having severe post-stroke neurological impairment. according to bi scores, 31% of the chronic sampe receiving rehabilitation were independent in adl, while 42% were in need of some help and 27% were dependent in adl. the majority (58%) of participants in the chronic group had mild neurological impairment according to the sss and 3% had very severe neurological impairment. table 3 presents the perceived impact of stroke (sis) in the chronic rehabilitation sample. participants perceived the greatest impact of stroke in the domains of strength, participation and hand function, with domain scores of 44.7, 36.5 and 28.8, respectively. furthermore, hand function had the lowest median score of 10. the domains of communication and memory and thinking had the highest mean scores of 84.4 and 85.1, respectively. self-reported recovery ranged from 40 to 90, with a median of 60. table 3: the stroke impact scale 3.0 aggregate domain scores and self-rated recovery (n = 62). discussion uganda is one of the low-income countries where stroke is becoming a serious public health concern (chan 2015). this study is the first to describe the clinical characteristics, functioning and perceived impact of stroke in a chronic sample receiving rehabilitation in uganda. the mean age in the acute and the chronic rehabilitation samples was low, 49 and 53 years, respectively. the majority of the participants in the acute sample had moderate or severe neurological impairment, indicating that this group was more likely to seek medical attention and be admitted to mulago hospital in kampala, which was also found by lawson (2004). although more than half of the chronic sample had had a mild stroke, it is plausible that people with milder impairment might not seek medical advice, as has been suggested by owolabi et al. (2015). the sis domains perceived as most impacted by the participants in the chronic rehabilitation sample were strength, hand function and participation. the mean age of this study population is 49 years, and it reflects previous studies that have shown that stroke affects a young population in uganda and other sub-saharan african countries, compared to a mean age of 75 years for stroke in high-income countries (cossi et al. 2012; kwarisima et al. 2014). the young ugandan population has a life expectancy of 58 years and appears to be compromised by hiv and aids and other communicable diseases. greater attention needs to be focused on prevention strategies to target risk factors so that the incidence of non-communicable disabling conditions can be reduced. more women than men with stroke were included in both the acute and the rehabilitation samples. this gender difference is in agreement with previous reports, which have suggested that women have a higher probability of seeking treatment at cheaper government hospitals (lawson 2004). previous studies (bwala 1989; garbusinski et al. 2005; kwarisima et al. 2014; njoku & aduloju 2004) have also shown that women have more severe strokes that require hospital admission. furthermore, a study from tanzania showed that the number of women affected by stroke was higher than that of men, and women were generally more disabled and dependent than men (walker et al. 2000). in contrast, study findings from nigeria and tanzania suggest that males with stroke outnumber their female counterparts (garbusinski et al. 2005; walker et al. 2000). in this study, ischaemic stroke was found to be the most common type of stroke, which is in agreement with an earlier study in uganda (kwarisima et al. 2014). the same result was reported in a study from tanzania at muhimbili national referral hospital (mlay & bakari 2010) but is in contrast to the findings from studies in nigeria (njoku & aduloju 2004) where haemorrhagic stroke has been reported to be more common than ischaemic stroke. the result from sis 3.0 uganda version showed that strength, hand function and participation were the most impacted sis domains with low mean scores for the rehabilitation sample. our findings concur with those from other studies using the sis (guidetti et al. 2014; lai et al. 2002; nichols-larsen et al. 2005), but these domain scores were even lower in the ugandan sample. the mean scores in other sis domains such as emotion, adl/iadl and mobility were lower than in a swedish study (guidetti et al. 2014), although the findings showed trends similar to previous studies (carod-artal et al. 2008; duncan et al. 2003). a plausible reason for the reported high impact on hand function and participation could be that people with stroke who were referred to physiotherapy in the subacute phase had impaired hand function and decreased physical strength. hand function is necessary for performing activities in almost all contexts. in the cultural context of this study, hand function might be even more vital than in high-income countries because more households in uganda earn their living from work for which physical strength and fine motor ability are essential, such as for gardening, construction work and handicrafts; this is also shown in a study from rwanda (urimubenshi 2015). any hand impairment could have been perceived as a serious restriction to participation in daily life. there was a low perceived impact on memory and thinking and emotion domains. one explanation could be that such impairments may be less obvious in everyday life than perceptions of physical limitations (lai et al. 2002). methodological considerations one strength of this study, even though the study samples were small, was the similarity of the demographic characteristics with those in previous studies on people with stroke in other sub-saharan countries (bwala 1989; cossi et al. 2012; garbusinski et al. 2005; walker et al. 2000). in addition, the mean age and other characteristics are in line with results previously reported for a group of people with stroke from uganda (nakibuuka et al. 2014). however, the results should be translated with caution to the broader population of people with stroke in uganda and sub-saharan africa as this study involved a small number of participants in an urban and peri-urban sample. moreover, the study applies commonly used and well-established assessment instruments such as the bi, sss and sis. furthermore, with regard to stroke severity, the measurements represent the patient perspective, that is, a patient-reported outcome measure (sis), as well as the views of healthcare personnel (sss), functioning in personal adl, and the bi. an additional strength of the study was that all data were collected in face-to-face interviews. written self-reports would not have been feasible for all participants because of language and literacy complications. moreover, data collection for the rehabilitation sample was conducted in the participants’ homes, enabling validation of the participants’ responses. one limitation of the study is the use of two separate samples in a cross-sectional design instead of a prospective longitudinal design which could have provided information on the stroke survivors’ process of return to everyday life after stroke and the need for rehabilitation to regain functioning. furthermore, another limitation regarding the representativeness of the included samples is the use of the inclusion criteria: ‘age not more than 75 years’ and ‘less than 3 years post-stroke’. these criteria might have caused a bias by excluding persons with stroke having other clinical problems that impacted their functioning even if both samples were relatively young in comparison to samples with stroke in high-income countries. the original study design involved inclusion of persons with stroke from the neurology ward, conducting baseline assessments and 3-month follow-up after stroke onset. however, patients at mulago hospital primarily had severe stroke, and it was difficult to trace people with less severe stroke. very few of the participants included in the acute group were accessible for follow-up. many were deceased; others returned to their rural homes and could not be contacted. the attrition rate was therefore close to 100%. because of the high attrition rate, we decided to alter the design to a cross-sectional study involving two separate samples. by including participants who were receiving rehabilitation, we were able to collect information on the perceived impact of stroke from people with less severe stroke who had progressed from the acute phase after stroke. this study is the first of its kind and should be seen as an initial step in building knowledge regarding the impact of stroke in daily living in uganda. thus, this explorative work should be pursued and evaluation of people with stroke and their families using relevant, culturally adapted assessments of their situation should be continued. more knowledge about the impact of stroke is essential for the development of guidelines for stroke care in uganda. this would include rehabilitation interventions that are feasible in the ugandan healthcare context in both rural and urban areas. furthermore, future research should focus on interventions that are relevant, accessible and culturally acceptable to those who need them most, utilising available and accessible resources within the healthcare context, such as the use of mobile phones, to provide basic rehabilitation services after stroke (kamwesiga, tham & guidett 2017). conclusion people with severe and moderate stroke were more likely to be admitted to the neurology ward at mulago hospital, kampala, uganda. the mean age of the study sample was much lower (mean 49) than the mean age of stroke in high-income countries. the domains perceived as being most impacted by the stroke were strength, hand function and participation in daily life. there is a need for further knowledge about the impact of stroke to develop guidelines for stroke care including rehabilitation interventions feasible in the ugandan healthcare context in both rural and urban areas. acknowledgements this study was supported by a grant from the swedish research council (grant number 2014–2863). the authors would like to extend their sincere gratitude to the participants and their families for their active participation in the study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions s.g.e.g was the project leader, and together with l.k.v.k. and g.m.e. was responsible for the study design. j.t.k. and s.g.e.g. performed most of the data collection. j.t.k. prepared the samples and g.m.e. performed calculations. the data analysis was conducted by j.t.k., s.g.e.g. and g.m.e. authors j.t.k. and g.m.e. wrote 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research methods and design results discussion conclusion acknowledgements references about the author(s) surona j. visagie division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa christopher m. likando division of disability and rehabilitation studies, faculty of medicine and health sciences, stellenbosch university, cape town, south africa citation visagie, s.j. & likando, c.m., 2025, ‘an exploration of adherence to the world health organization’s prosthetic standards in namibia’, african journal of disability 14(0), a1614. https://doi.org/10.4102/ajod.v14i0.1614 original research an exploration of adherence to the world health organization’s prosthetic standards in namibia surona j. visagie, christopher m. likando received: 15 nov. 2024; accepted: 09 may 2025; published: 25 june 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the world health organization (who) published ‘standards for prosthetics and orthotics’ to improve these services globally. research that compares services to the standards assists in developing a baseline against which future development can be measured and identifies areas needing improvement. objectives: this article aims to describe prosthetic services in namibia and compare them to the 60 who standards. method: a mixed-methods exploratory design was employed. qualitative data were collected through semi-structured interviews with purposively selected participants, including managers (n = 2), service providers (n = 9) and users (n = 16). the data were analysed using content analysis. in the quantitative phase, cross-sectional surveys were administered to managers (n = 2), service providers (n = 10) and users (n = 120). the data were analysed descriptively. qualitative and quantitative data were triangulated to determine namibia’s adherence to the standards. results: the triangulated data showed adherence to 14 standards, partial adherence to 24 and non-adherence to 22 standards. as per the standards’ requirements, the government directed the provision of prosthetic services, and a range of prosthetic products was provided free of charge at all levels of care. funding challenges, no national prosthetics committee, and no databases as well as lacklustre support of providers’ careers and professional development, indicated areas of non-adherence. conclusion: a systems-based approach, utilising a people-centred conceptual framework, can aid namibia and similar countries in implementing the standards. contribution: this study is the first to provide information on implementing who prosthetic standards in an african setting. keywords: namibia; personnel; products; prosthetics; provision; policy; world health organization standards. introduction in 2017, the world health organization (who), in collaboration with the international society for prosthetics and orthotics (ispo), introduced 60 standards for orthotics and prosthetics (o&p) (who 2017). these standards aim to protect the rights of the users by ensuring safe, appropriate, affordable and high-quality prostheses. the standards are organised into four key areas: policy; products; personnel; and provision (who 2017), which together provide a framework for o&p research and service delivery (figure 1). figure 1: the focus areas of world health organization standards for orthotics and prosthetics. these four domains serve as the conceptual framework for this study, which aims to explore the extent to which prosthetic service delivery in namibia aligns with who standards across the domains. to provide context for this exploration, each domain is briefly outlined. policy the 15 policy standards focus on governance, financing, information collection and sharing. according to the policy standards, governments are responsible for developing, implementing and monitoring national o&p policies. in fulfilling this role, the government should seek guidance from a national committee that includes representatives from all relevant stakeholder groups. collaboration among stakeholders enhances policy relevance and effectiveness through the integration of diverse perspectives and expertise (maclachlan et al. 2018; smith et al. 2022). however, lang et al. (2019) showed that persons with disabilities are often excluded from policy development and implementation processes in africa. furthermore, the absence of policy and poor policy implementation lead to inconsistent and/or protracted decision-making that impedes service delivery (allen et al. 2020; baudin et al. 2020). products the nine (who 2017) product standards emphasise the importance of affordable, high-quality and cost-effective products that are appropriate to user needs. this means that a range of components (i.e. prosthetic knees or feet) and materials should be available in a country (who 2017). products must be reliable and should facilitate optimal function and participation in economic, cultural and lifestyle activities (baudin et al. 2020). they must also be suited to local climate and terrain (kam et al. 2015). although a broad spectrum of prosthetic options exists globally, from basic models to advanced technologies, users in many african countries lack access to the latter because of the financial barriers (wyss et al. 2015). product selection should be informed by the user’s physical capacity, safety needs and economic circumstances (asif et al. 2022). personnel prostheses are complex devices, custom-made to fit the needs and morphology of individual users. thus, capable providers with clinical and technical skills are essential to prosthetic service delivery (baudin et al. 2020). the 12 personnel standards further emphasise the need for adequately trained prosthetists to meet national demand. standards also call for clearly defined career pathways, ongoing professional development, mentorship, and supervision to maintain quality and ensure the sustainability of services (baudin et al. 2020). provision the final domain comprises 23 service provision standards that emphasise integrating prosthetic services into national healthcare systems across all levels of care. services should be non-discriminative, accessible, user-centred and tailored to meet individual needs (who 2017). in many african countries, prosthetic services are concentrated in urban areas, limiting access for rural populations (ennion & johannesson 2018; kam et al. 2015; urva et al. 2023). additional barriers such as high transportation costs, poor infrastructure, lack of standard operating procedures, limited government support, and shortages of trained staff and materials further impede service access (allen et al. 2020; koho 2024; urva et al. 2023; wyss et al. 2015). rationale and aim according to the who (2017), countries can use these standards to develop a baseline for monitoring the progress of prosthetic systems and services. lemaire, supan and ortiz (2018) emphasise the importance of country-wide studies that assess adherence to the standards. no research could be identified on the topic. this lack of research hampers the development of evidence-based policy and service provision, which in turn can negatively impact user outcomes. the current study aimed to describe prosthetic services in namibia and compare them to the 60 who standards. findings might be relevant to a broader audience because of the scarcity of similar work. context namibia is located on the west coast of southern africa, covering an area of 825 000 square kilometres and has a population of 2.5 million (world bank 2024). despite ongoing urbanisation, 60% of the population resides in rural areas. namibia faces notable socio-economic disparities as an upper-middle-income country with a gross domestic profit (gdp) of $5031.10 per capita (world bank 2024). income and asset inequality remain significant, with a gini index of 59.1 (world bank 2024). namibia operates a two-tiered health system, with over 80% of the population relying on public healthcare services (christians 2020). the population’s geographical dispersion, long distances, challenging terrain and climate conditions pose logistical challenges for service delivery (eide et al. 2015). the ministry of health and social services (mohss) offers lower limb prosthetics services through three facilities and mobile outreach clinics. research methods and design design the study employed a sequential, mixed-methods, exploratory design (o’leary 2021). a quantitative cross-sectional survey followed a qualitative descriptive study (bradshaw, atkinson & doody 2017). a sequential mixed-methods exploratory design is appropriate when little or no research has been previously conducted on a topic (kroll, neri & miller 2005), as is the case in the present study. participants’ understanding and narrative description of the situation regarding prosthetic service delivery in namibia were utilised to provide background on the issue and develop a survey through which results could be quantified. study setting participants were recruited from the o&p centres at windhoek central hospital and oshakati intermediate hospital. windhoek central hospital provided around 200 lower limb prostheses per year. the facility employed two orthotists and/or prosthetists, nine orthopaedic technologists, five orthopaedic assistants and three support staff. oshakati delivered around 120 lower limb prostheses per year. the workforce consisted of one orthotist and/or prosthetist, five orthopaedic technologists, two orthopaedic assistants and three support staff members. population, sampling and participants twenty-seven individuals (2 managers, 9 service providers and 16 users) participated in the qualitative descriptive study. the 132 participants in the quantitative phase included the same 2 service managers, 10 service providers and 120 service users. participants were identified and/or sampled in the following manner: the 2 service managers from the two settings participated in both phases. out of a possible 22 service providers, 9 were purposively sampled for the qualitative phase, while 10 completed the survey. they were included if they had 5 or more years of relevant work experience. the population of prosthetic users was 691 who received prosthetic services at one of the two o&p centres or their outreach points between 2013 and 2018. users had to be at least 18 years old and free from additional impairments that might hinder prosthetic function. the second author used purposive sampling to select 16 users to participate in the qualitative phase. during sampling, users from both facilities were included. to ensure variation among participants, both men and women, of different ages, with different amputation levels, and from rural and urban areas were selected (palinkas et al. 2016). the sample size calculation indicated that 376 users would provide a 95% confidence level (95% confidence interval). unfortunately, the actual sample was much smaller because of the practical difficulties, such as users having passed away or not meeting the study criteria because of additional health conditions. furthermore, incomplete records, relocation and changed phone numbers made it challenging to contact prosthetic users. this reduced access to potential participants prevented random sampling. therefore, convenience and snowball sampling strategies were used. in this manner, 120 users were identified. both the non-probability sampling strategies and the reduced number of participants hampered the validity of the results. data collection tools and methods three interview schedules, one for each participant group, were developed in-house based on the who standards for prosthetics and orthotics (who 2017). the second author conducted one-on-one face-to-face interviews. in instances where there was language barrier, an interpreter assisted with data collection. quantitative data were collected using two self-developed surveys: one for managers and providers, and one for the users. these surveys were based on qualitative findings and the who standards for prosthetics and orthotics (who 2017). data analysis qualitative data were analysed through content analysis, as it allowed for some quantification of the data (vaismoradi et al. 2016). data analysis was deductive, focusing on adherence or non-adherence to the 60 standards. quantitative data were analysed with statistical package for the social sciences (ssps) version 28.0. continuous data were presented through means and standard deviations. nominal categorical data were presented through frequencies and percentages. counting response frequencies facilitates an understanding of the data distribution. data from the two phases were triangulated, i.e. narrative information from interviews was used to contextualise and add explanations to numerical information from the survey on whether a specific standard was adhered to or not. the results are presented according to the extent to which standards were adhered to rather than themes, as per the article’s aim. rigour data from the different methods, tools and sources were analysed separately, triangulated and presented in an integrated manner (o’leary 2021) to provide a holistic picture and enhance rigour. trustworthiness of the qualitative phase was further supported through purposive sampling, seeking data saturation, using tried data collection and analysis methods, peer debriefing, and describing the methods, setting and participant demographics. the surveys were not formally tested for criterion validity and reliability; however, input was sought from prosthetists and academics, and a pilot study was conducted to enhance content validity and face validity. ethical considerations ethical approval was obtained from stellenbosch university health research ethics committee on 17 december 2020 (ref no. s20/04/090), and permission to collect data was obtained from the research committee of the ministry of health and social services in namibia (ref no. 17/3/3 cml). participation was voluntary, and all participants provided written informed consent. data are saved on password-protected computers and in cloud locations. only the authors have access to the data. results demographics the ages of service providers and managers ranged from 39 to 46 years, with a mean age of 42.33 years (s.d. = 2.71). their work experience varied between 11 and 21 years. among them, three were prosthetists and orthotists, and nine were orthopaedic technologists (table 1 & table 2). of the 120 user participants, the majority were male (74.2%, n = 89) and from the khomas region (65%, n = 78). their mean age was 48.72 years (s.d. = 2.71), and they had been using a prosthesis for an average of 16.30 years (s.d. = 12.25) (table 2). table 1: qualitative phase demographic information. table 2: quantitative phase demographic information. adherence to world health organization standards figure 2 shows that, across the four areas, 14 (23%) of the 60 standards were adhered to, 24 (40%) were partially adhered to, and 22 (37%) were not adhered to at all. figure 2: adherence in namibia to world health organization standards for orthotics and prosthetics. standards that were adhered to the namibian government, through the ministry of health and social services, guided and regulated prosthetic service provision in the country (standard [std.] 1, 5) through strategic and operational plans (mohss, 2018) (std. 59): ‘when it comes to long-term operational plans and performance indicators, we do not work on our own, we are part of the ministry and we contribute to the objectives of the ministry, so we are using the annual plans for the ministry and we are also using the strategic plan, which is a long-term plan of the ministry …’ (service manager 02) the country did not have universal healthcare, but government prosthetic services were provided free of charge to users (std. 11), and prosthetic services were included in what little insurance systems the country had (std. 12). a wide range of contextually appropriate lower limb prosthetics products (std. 16), classified according to international standards (std. 18), were available (table 3). table 3: suspension systems and prosthetic component availability (n = 12). more expensive products were not always provided because of budgetary constraints: ‘…[w]hat we are providing meets the needs of the patients but at a certain level, you always have one or two who go an extra mile with their needs, like the blades … our prosthetics products can ferry our patients to where they are working and where they are staying … we cannot satisfy everyone but satisfying 95 to 98% of clients.’ (service provider 04) ‘he is saying, he is very much happy … the prosthetic leg is helping him a lot, and even if we were in a jungle and probably the lion was approaching us, he might even run faster than any of us, and he might leave us behind.’ (service user 15, through an interpreter) most users (85.9%; 103) indicated that the prosthetic components they received addressed their functional needs (table 4). however, the prosthesis affected the ability to work of 40.8% (n = 49) of users. furthermore, 50.8% (n = 61) of users strongly agreed that they depend on others more than they would like to. table 4: users’ experience of prosthetic functioning and services (n = 120). maintenance and repair of prosthetic products were part of the provided services (std. 43): ‘the maintenance and repair, we look at the cosmetic finishing of the prosthesis, we look at the replacement of components … at the socket replacement in cases when the patient outgrows the prosthesis or the stump has reduced in volume. so, we do everything.’ (service provider 04) about 85.8% (n = 103) of users took their devices for repair or maintenance in the past, and 75.83% (91) were satisfied with the repair and maintenance they received (table 4). the state regulated service providers through the health professions council of namibia (std. 34). professionals were adequately qualified (std. 25), and their training met international standards (std. 27). every service delivery site had at least one prosthetist and/or orthotist (std. 32) who provided supervision to and was responsible for services provided by technicians and other non-clinical staff (std. 35). participants indicated that more prosthetists and orthotists were needed: ‘there is only one position for a prosthetist and orthotist at this facility. this person is expected to supervise and guide all the clinical and technical duties, it’s a situation that stretches someone to an extent that sometimes quantity outweighs the quality and then the professional guidance is a bit compromised, so, it is a problem.’ (service manager 02) partially adhered to standards the national guiding framework for prosthetics service provision (mohss 2001) (std. 4) was outdated: ‘they were formulated more than 10 years ago … they are not useful because things have changed, as there is a change in technology and new international policies.’ (service provider 01) to be specific, 95% (114) of users were not aware of any policy. the mohss monitored prosthetic services (std. 6). however, the most recent annual report for the 2017–18 financial year [20] had figures for windhoek central hospital only. participants felt the budget was insufficient: ‘…[y]ou might budget a certain amount and at times you might get what you budgeted for but many a time we do get less or not getting anything at all, and sometimes the money is only made available towards the end of the year.’ (service provider 08) they indicated that an increase of 4–10 million namibian dollars is needed. this might indicate that the cost of prosthetic services is not assessed periodically, or if assessed, budgets are not adjusted accordingly (std. 9). financial shortfalls hamper service delivery. ‘we have patients that are coming in with broken prostheses and we still send them back home because we do not have the materials … some of them their prostheses are in very bad shape and they are in dire need of these services but at the moment we are not able to provide anything because there are no materials … we have a challenge with the issue of equipment maintenance and replacement because of the funds; sometimes, there is no budget at some point to replace certain equipment.’ (service provider 04) this also causes shortfalls in materials and consumables: ‘they usually don’t have materials, every time she goes there, they tell her the same story of no materials.’ (service user 07; through interpreter) budgets were not ring-fenced: ‘…[w]hen there is a crisis or other needs of the ministry, these services usually take a back seat because there is a narrative that prosthetic patients’ “don’t die,” therefore some of the priorities of these services end up being overlooked.’ (service provider 02) international support was limited to the training of professionals, and it was unclear whether this contributed to the long-term aims of strategic plans and whether it was in alignment with national health plans (std. 8). continuous professional development (cpd) was compulsory but poorly enforced (std. 30): ‘i have seen a document that talks about cpd, but the reality is that it’s not reinforced to a point where one is required to submit the points accumulated.’ (service provider 09). consultations between prosthetists and other rehabilitation professionals were irregular with limited multidisciplinary teamwork (std. 26). other rehabilitation professionals were regarded as having fair knowledge about prosthetics (std. 29). most managers and providers indicated that they occasionally provided training to other healthcare team members (std. 50). service providers were unhappy with the existing career structure (std. 36): ‘…[i]t is a government-driven service, so it is more of service delivery than career development…’ (service provider 02) first-time users could not choose either a provider or products (std. 39). on return visits, users were often allowed to consult with a service provider of their choice (std. 39): ‘…[f]or the first time, they do not have any choice. but for the second time, they can always select, that i want to be assisted by the person who assisted me last time i was here.’ (service provider 03) ‘clients do not have a choice on what is to be used on their prostheses, it is us professionals who choose what we are going to provide to them … we are the ones who do the assessment, and we know what is right for the patients because some may opt to go for expensive items, but such a person may end up not using it and just keep it under the bed and since it is expensive somebody else may need it.’ (service provider 03) another provider indicated that with empowerment, users could choose components: ‘we always discuss with the patients, we give them options and we show them some pictures and samples that we have, then they are allowed to choose … we still have to consider the type of components available, then they could choose from those.’ (service provider 05) users concurred that with experience, they took a more active role and provided input in decisions regarding their prosthetic components: ‘the very first prosthesis that she got, she was not allowed to choose the type of leg that she wanted or the materials that were used, she was just informed on the type of leg that she was going to get. but then the last one that she got, she chose the type of leg and materials that she wanted.’ (service user 04, through an interpreter) they also participated in setting goals and planning treatments (std. 52): ‘i think, for every step, we try very much to involve the service user and the caregivers, because at the end of the day, if i make my own decision that does not sit well with the user, it means the user might not use the product, so we try by all means to involve them as much as possible.’ (service provider 06) however, further explanations reveal an emphasis on education rather than collaboration: ‘from the beginning when we are doing the evaluation, we give them a plan on how we are going to provide them with the device and then we tell how the device should be taken care of and then we provide with information of how they supposed to be coming back to use and everything needed. so, we believe that such an arrangement gives them an overview on how to use the device and what they are supposed to do for the device to have a long-life span.’ (service provider 02) most users, 71.5% (n = 86), were involved during assessment, planning and goal setting. most were also satisfied (72.5%, n = 87) with the goals and treatment plan (table 2). prosthetic services were available to everyone, without any discrimination, at all three levels of care (albeit through outreach clinics at the primary level) and supported through referral pathways (std. 40 & 42). long distances of up to 1229 kilometres (mean 258.38; s.d. 265.61) and transport challenges made access difficult for some. only 32.5% (n = 39) of users utilised free government transport. users experienced discrimination when accessing government transportation in what appears to be an informal triage process: ‘they [patients] do complain that they are always the last group when it comes to boarding the hospital’s official bus because they are seen that their cases are not considered as an emergency, therefore, they can wait, so other groups of patients are the ones prioritised first.’ (service provider 05) thus, while prosthetic services were part of the healthcare sector (std. 41), it might be deemed of lesser importance than other healthcare services. facilities were mostly accessible and safe (std. 47): ‘she is saying the building is built in a friendly manner … and persons with artificial legs could go in without any difficulties in accessing it … the signs are there to read but for someone who has not been there, some people can always direct you and it is very easy to access through directions.’ (service user 08) concerns were raised (3/16) that directions were not always visible: ‘she says the direction signs from the main entrance of windhoek central hospital are not visible and therefore it is not easy to tell where the orthopaedic facility is.’ (service user 02, through an interpreter) the manufacturers’ instructions were usually followed. deviations were not documented (std. 54): ‘yes, we try to follow the component manufacturers’ guidelines, but sometimes we end up mixing. for example, a certain knee joint is supposed to be matched with a certain foot of a certain k level, but at the end of the day we end up using a k4 or k3 knee joint with a k2 foot because maybe at that moment, we do not have a suitable foot …. because maybe it is very expensive, therefore we end up buying, for example, a sach foot which is a k1, where this will result in the inappropriate matching of components or mixing wrong components of different activity levels.’ (service provider 01) about 98.3% (n = 118) of users received training that enabled effective use of the prostheses (std. 55), but training was focused on indoor mobility and sometimes limited by transport challenges: ‘he was trained here at this facility on how to walk, and that really helped him, and first he was not confident enough, but as training days moved on, he developed confidence. it lasted 2 weeks, and then he went home after that, and he trained himself on how to walk in the sandy areas because here the surface is nicely flat, but at home there is uneven ground, and that is why he needed to train more.’ (service user 11, through an interpreter) users had the final say about the fit and functionality of the prosthesis (std. 56), as indicated by 88.3% (n = 106) of users in the survey and through qualitative data: ‘that decision is for the patient, there is no way you can impose a prosthesis on someone who does not want it.’ (service provider 04) ‘for me, usually i do not leave if i am not happy with the work done, so i usually stay up until i am happy with everything, then i go.’ (service user 09) follow-up was done on an informal basis (std. 58): ‘…[t]he follow-ups we have, we normally just inform our patients that if the device is giving them problems, they can always come back, but we don’t give them a time frame on when they are supposed to come back unless there is a specific thing that we are looking at.’ (service provider 02) this manner of follow-up suited users who thought it unnecessary to return to the centre if they did not experience problems with the prosthetic: ‘she is saying the kind of follow-up that she got, she was told to come back only when there was a problem, so they never gave her a time frame, and then she went back when she encountered a problem with her leg and the service was smooth … it is more important if one goes back only when there is a problem and says i have this problem, that way it is much easier.’ (service user 08) other users felt regular follow-ups could be helpful as they might be unaware of a problem with the prosthesis: ‘at the moment, some patients who have problems with their prosthetic legs do not even know what is wrong, so it would be good if the professionals could always make follow-ups.’ (service user 06) standards not adhered to users were not included in policy development, planning, implementation, monitoring and evaluation of services (std. 2, 38). there were no national prosthetic committees or databases (std. 3, 14). neither was there a national priority prosthetics products list (std. 17). since very little information was documented and even less research was conducted (std. 23), international collaboration and sharing of experiences, data and research (std. 7) will be challenging. the economic benefits of prosthetic services were not analysed (std. 10). awareness-raising strategies for prosthetic services were lacking (std. 15): ‘…[t]here is not much awareness about these services that we offer, and very few people are aware of these services. that means not everyone who is amputated will come to the facility, so only part of them are getting the service.’ (service provider 01) no professional prosthetic training was provided in namibia at the time of the study (std. 28). strategies for staff retention were not in place (std. 33). without equipment to examine the quality of devices, quality was equated with the lifespan of the limb (std. 22). prosthetic components and materials were not subject to regulation. components were reused without quality control testing (std. 20, 21). even so, lower limb prosthetic components were commonly reused. no prosthetic components were manufactured locally (std. 24), and neither were prosthetic tools, consumables, machines and components exempt from import duty (std. 19). facilities had no equipment maintenance, repair and replacement plans (std. 48), and little funding was allocated for equipment maintenance and replacement. prosthetic manufacturing equipment is specialised and could not be repaired by the hospital maintenance crew: ‘…[w]e don’t have technicians to maintain the machines. so, you will find that we have a lot of machines in the department, but most of them are not working and there is no one to maintain them.’ (service provider 07) user outcomes were informally evaluated and not documented (std. 57): ‘most of the time we don’t ask how the first one or the old one and to know whether it was good or something, i think we have neglected that part …. it’s very important to get such feedback, which we are neglecting.’ (service provider 07) no formal peer support or counselling was provided (std. 53). users found informal peer counselling valuable: ‘if there is a new patient under training and there is an old user who probably came in for some reason, maybe for replacement or repair of his device, we can then ask him to go and assist or share his experience with the new user, that is the only platform that they can use. we usually leave them discussing while they are at our facility, then the old user will provide hints to the new user on how to use the device. but we do not have an official platform where we call in the old users to come and guide the new users.’ (service provider 02) ‘the first time before she received her prosthesis, the patients that she found there actually explained more to her about how to use the prosthesis, and she felt that she was helped, it boosted her confidence, and it made it easier for her to accept her new leg.’ (service user 04, through an interpreter) finally, disaster preparedness was not part of prosthetic service plans (std. 44). no documented policy that outlines patient-centred services and safeguards the rights of prosthetic service users could be identified (std. 37). the probability of integrating prosthetic services with broader assistive product services had not been investigated (std. 46). discussion the namibian government developed, coordinated and provided prosthetic services through the mohss. however, the government can provide additional practical guidance and support to enable adherence to all 60 standards. an outdated national guiding document mohss 2001 may lead to disregarding current evidence, resulting in services that do not respond optimally to the needs of users, providers and the context (baudin et al. 2020). additionally, users were unaware of the policy and were not involved in its development, implementation or monitoring. this can leave them disempowered as they might not fully know the available options and their rights (alemu, girma & mulugeta 2021; maclachlan et al. 2018). a national prosthetics committee can provide a platform where all voices, including those of users, can be heard (maclachlan et al. 2018). peta (2017) and trafford and swartz (2023) presented ways in which africans with disabilities can be involved in policy processes to ensure that their opinions are included. a reasonably wide range of context-appropriate, high-quality prosthetic products was available free of charge in namibia. this heartening finding was remarkable as free-of-charge prosthetic provision often results in the use of entry-level products (pienaar & visagie 2019). as in other african settings, rural users experienced access problems due to distance and transport barriers (ennion & johannesson 2018; kam et al. 2015; urva et al. 2023). the namibian healthcare budget accounts for 14.5% of total government spending, one of the highest rates in africa (world bank 2024). however, what percentage of this budget is earmarked for lower limb prosthetic services remains unknown. what was found was that the funding was insufficient and was not always utilised as per plans. insufficient funding can deprive persons with amputation of their right to a prosthesis with negative functional, economic and quality of life effects (cote 2021). the absence of a database that captures information on amputations and prosthetic services means that service planning and resource allocation are conducted with limited evidence-based guidance. this can lead to inequitable service access (akram et al. 2018). the information deficit started at the service delivery level with poor documentation of treatment interventions and outcomes and contact details, as the struggle to identify study participants showed. clinical records are legal documents and should be maintained. they can also form the basis for a national database. in addition to service planning, a database can stimulate research and facilitate national and international information sharing and collaboration. collaboration kindles ideas and interventions while saving costs as repetition and outdated, ineffective strategies are pointed out (ramstrand et al. 2020). exemption from import duty will be cheaper than funding and running a manufacturing plant. importing components gives users access to a large range of products and a bigger choice than what local manufacturing can provide. however, for user safety and to prevent wasting of funds, an independent body must regulate prosthetic components and materials, both new and recycled, to ensure each component complies with the international organisation for standardisation (iso) or equivalent standards. similarly, government tender contracts must include a clause that prevents purchasing components that are not iso certified. structural testing of prosthetic products (both new and second-hand) protects users from harm resulting from component failure. substandard products require frequent repairs and replacement, making them uneconomical. for every million people, there should be between 5 and 10 prosthetists (who 2017). thus, namibia should have 10 to 20 prosthetists, rather than the current 3, for its population of 2.5 million. a shortage of prosthetists is common in africa, attributed to the scarcity of institutions offering accredited prosthetic training courses in the region (aduayom-ahego, ehara & anareme 2017). the challenges of adhering to cpd can likely also be attributed to the limited number of local training institutions (aduayom-ahego et al. 2017) and the scarcity of locally based product suppliers. another african research has also found limited continuing professional development among prosthetists (aduayom-ahego et al. 2017; magnusson, shangali & ahlström 2016; mcdonald, kartin & morgan 2020). not staying abreast with new evidence and developments negatively impacts service quality (highsmith 2015). staff development, retention and career pathways are critical components of an adequate and competent workforce. magnusson and ahlström (2012) showed that prosthetists in sierra leone were not happy with their remuneration. low salaries can demotivate service providers and make retaining and appointing staff difficult. mwetulundila (2019) found that gender and cultural affiliations caused barriers to career progression in nursing in namibia. the present study found no evidence in this regard. client-centred services require people to have freedom of expression and choice (langberg, dyhr & davidsen 2019). users must be allowed to choose service providers and prosthetic components (o’keeffe & rout 2019). providers are responsible for empowering users to make informed choices (farrar, niraula & pryor 2022; langberg et al. 2019). if service users are not part of the decision process regarding prosthetic components, they might be unhappy with the prosthesis and abandon it (anderson et al. 2022). first-time or inexperienced users can also learn from experienced users through peer support. peer support may assist them physically and emotionally, and build their confidence to decide which components are appropriate to their needs (highsmith 2015). poor fitting, discomfort and functional challenges can be identified and rectified during follow-up appointments before secondary complications such as blisters develop or the user abandons the devices (lee & veneri 2018). first-time users should be seen within 3 weeks after fitting (o’keeffe & rout 2019), with further regular appointments every 6–12 months. one-stop facility that has a variety of assistive products available in one place and offers assessment and interventions by a multidisciplinary team should be considered because persons using prostheses often need additional devices such as crutches or a wheelchair (smith et al. 2018). one-stop facilities enhance the accessibility of assistive products, thus saving users’ time and money (who 2022). however, the specific nature of such facilities in namibia and africa must be further explored as the norwegian model (who 2022) may be unsuited to settings with vast rural areas and highly dispersed populations. assistive technology (at) models in africa must suit the geographical structures of different countries and consider dispersed populations and long travel times in often harsh environments (ennion & johannesson 2018; kam et al. 2015; wyss et al. 2015). poorly functioning or malfunctioning manufacturing machines and tools can cause delays in service delivery and result in prolonged waiting times for prostheses. thus, a maintenance plan must be in place. furthermore, skilled technicians who can do maintenance and repair must be trained, employed and supported with funding for parts. to reduce costs, one or two people can be trained and employed to travel between facilities. this is an area where international collaboration with industry might be beneficial. limitations a significant limitation of this study was the relatively small number of participants in the quantitative phase, along with the use of non-random sampling, which may have affected the applicability of the findings (o’leary 2021). additionally, the lack of demographic and amputation-related data of individuals who could not be traced limited our ability to determine whether these individuals differed in important ways from the study participants. moreover, the surveys used in this research were not formally tested for validity or reliability, which may have affected the strength of the results. conclusion out of the 60 standards, 14 have been fully implemented. of the remaining 46, some require complex interventions and substantial financial investment for effective implementation. it is recommended that the budget allocated to prosthetic services be increased and ring-fenced to ensure long-term sustainability. furthermore, initiatives should be undertaken to establish clear career pathways within the profession and to facilitate access to cpd opportunities, both locally and internationally. several standards, however, can be addressed with minimal additional expenditure. these include fostering user participation in the planning, monitoring and evaluating services; establishing a representative prosthetics committee; systematically recording and analysing service-level data for integration into a national database; developing a national prosthetic product priority list; and formalising peer support programmes for users. a systems-based approach, guided by the 10 ps people-centred conceptual framework developed by maclachlan and scherer (2018), is recommended as an effective model for prosthetic service delivery in namibia and other comparable countries. with the support of the ispo, it is feasible for more countries to conduct nationwide research to assess how prosthetic services can be enhanced to align with the who standards. acknowledgements this article is partially based on the author, c.m.l.’s thesis entitled ‘an exploration of lower limb prosthetics service delivery in namibia in comparison to global standards’ towards the degree of doctor in the centre for disability and rehabilitation studies, stellenbosch university, south africa on 15 march 2023, with supervisors dr s.j. visagie and prof. g. mji. competing interests the second author, c.m.l., reported that they are an employee of the namibian ministry of health and social services (mohss), that may be affected by the research reported in the enclosed publication. they have disclosed those interests fully and have in place an approved plan for managing any potential conflicts arising from [that involvement]. authors’ contributions c.m.l. conceptualised the research, collected and analysed the data, and provided input to the manuscript. s.j.v. acted as promoter, assisted with conceptualising the research, analysing and interpreting data, drafted the manuscript, made changes throughout, and made it ready for submission. funding information the authors received no financial support for the research, authorship and/or publication of this article. data availability the data that support the findings will be available from the corresponding author, s.j.v., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated 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https://www.who.int/teams/health-product-policy-and-standards/assistive-and-medical-technology/assistive-technology/global-report-on-assistive-technology. wyss, d., lindsay, s., cleghorn, w.l. & andrysek, j., 2015, ‘priorities in lower limb prosthetic service delivery based on an international survey of prosthetists in lowand high-income countries’, prosthetics and orthotics international 39(2), 102–111. https://doi.org/10.1177/0309364613513824 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) meghann collins department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa daphney mawila-chauke department of educational psychology, faculty of education, university of johannesburg, johannesburg, south africa citation collins, m. & mawila-chauke d., 2025, ‘“when i don’t drink my pills, i go crazy!” attention deficit hyperactivity disorder medication: a risk or a resilience factor?’, african journal of disability 14(0), a1708. https://doi.org/10.4102/ajod.v14i0.1708 original research ‘when i don’t drink my pills, i go crazy!’ attention deficit hyperactivity disorder medication: a risk or a resilience factor? meghann collins, daphney mawila-chauke received: 03 mar. 2025; accepted: 02 oct. 2025; published: 10 dec. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: the global prevalence of attention deficit hyperactivity disorder (adhd) is increasing. children with adhd are exposed to various risk factors that adversely affect their quality of life. treatment is paramount to counteract these risks. current research focuses on how parents and teachers perceive children’s experience of living with and taking adhd medication. this study included children as participants, enabling their agency. objectives: this study aimed to investigate whether adhd medication is a risk or resilience factor for children diagnosed with adhd. method: a qualitative approach and a phenomenological research design were used in this study. nine children taking adhd medication in a mainstream private school were purposefully sampled as the study’s participants. data were obtained using semi-structured interviews, focus groups and children’s drawings and analysed using thematic analysis. results: participants identified that experiencing somatic side effects of adhd medication and not taking prescription medication for adhd were both risks, while taking prescription medication for adhd was reported to enable their resilience. the study found that although children with adhd face risks associated with taking medication for adhd, they also reported that their medication helped them cope with the adhd symptoms. conclusion: these findings demonstrate that medication serves as both a risk and a resilience factor for children with adhd. thus, interventions must be implemented to mitigate the risks and maintain the resilience factors associated with taking prescription medication. contribution: these findings can inform interventions to support children in mitigating the risks associated with adhd medication and foster children’s resilience. keywords: adhd; children; medication; private mainstream school; resilience factors; risk factors. introduction globally, children are increasingly diagnosed with attention deficit hyperactivity disorder (adhd), commonly referred to as adhd. a recent study by salari et al. (2023) indicates that 7.6% of children between the ages of 3 years and 12 years old worldwide have been diagnosed with adhd. in south africa, schellack, meyer and chigome (2019) estimated that between 8% and 10% of the population is living with adhd. these statistics show that adhd is becoming a grave mental health concern in children worldwide (ayano, yohannes & abraha 2020). according to the diagnostic and statistical manual of mental disorders, fifth edition–text revision (dsm-5-tr 2022), adhd ‘is a neurodevelopmental disorder characterised by inattention, hyperactivity and impulsivity, or a combination of the two’ (american psychiatric association [apa] 2022:37). inattention involves difficulties with focus, following instructions, complying with classroom rules, completing schoolwork or chores (roth et al. 2017) and organisation (strålin et al. 2022). hyperactivity-impulsivity includes restlessness, excessive talking, fidgeting and trouble staying seated, poor planning, difficulty waiting one’s turn and risky behaviour (apa 2022). attention deficit hyperactivity disorder is influenced by a combination of genetic, social, environmental, cultural and gender-related factors (liu et al. 2022). the disorder is highly heritable, with a 74% genetic influence (apa 2022). social factors, such as parental psychiatric history and socio-economic status, play a role, as do environmental risks like low birth weight, prenatal toxin exposure and infections (ali et al. 2022). cultural factors affect diagnosis because of differing attitudes towards behaviour and limited health care access, particularly in south africa, where some communities do not have access to diagnostic assessments or treatment for adhd (vrba, vogel & de vries 2016). gender differences exist, with boys diagnosed more often than girls (3:1 ratio) as inattention, more common in females, is less noticeable (israel, malatras & wicks-nelson 2020). a study by balan-moshe and gothelf (2021) shows that adhd negatively impacts individuals’ social, familial and scholastic domains of functioning. tsantilas et al. (2022) found that adhd affects children’s ability to learn at school. they are more likely to break road safety rules, be injured or hospitalised, be involved in car accidents and have shorter life expectancy than their peers (faraone et al. 2021). they are less likely to complete secondary education or attend tertiary education than their peers (apa 2022:74). left untreated, adhd places a financial strain on families, the economy and society as they require access to health services, specialised education and support within the criminal justice system (freire et al. 2021; nyundo et al. 2020). to combat the effects of adhd discussed above, health care professionals such as psychologists, paediatricians, neurologists and psychiatrists work in multidisciplinary teams to make a diagnosis, guided by the diagnostic criteria from the dsm-5-tr (apa 2022). this includes conducting a range of assessments, interviews and observations. once a diagnosis has been made, interventions are critical to enable the child’s overall functioning. non-pharmacological interventions focus on behaviour modification (maguvhe, mphahlele & moonsamy 2021), psychotherapy, neurofeedback, diet, herbal supplements and exercise (jeyanthi, arumugam & parasher 2019). clinical guidelines recommend pharmacological treatment, which includes stimulant and non-stimulant medications. however, the multimodal treatment of adhd study (mta) identified two major challenges of pharmacological treatments. the first is adherence, with only 7% of individuals with adhd regularly taking their medications (yearwood, pearson & newland 2021). the second challenge is persistence (khan & aslani 2019). despite the benefits of medication, children taking adhd medication face several risk factors. it is important to identify these risk factors because resilience can only be conceptualised in the presence of risks (ungar 2011). according to dvorsky and langberg (2016), ‘risk signifies an elevated probability of a negative developmental outcome for individuals of a designated risk group’ (p. 370). risk factors in this study refer to the side effects of adhd medication. it is well documented that children suffer from the adverse effects of adhd medication, such as appetite suppression, stomach pain (santos et al. 2021) and sleeping difficulties (storebø et al. 2018). some children who have been diagnosed with adhd have been found to cope well, irrespective of these risks (chan et al. 2022). this is referred to as resilience. resilience is a complex concept to define as there is no single definition of resilience; it varies across disciplines, cultures and person to person, and it can be viewed as both a process and an outcome. south african scholars such as theron and van breda view resilience as a process. theron (2016) states that ‘resilience is the process of adapting to significant adversity’ (p. 636), while van breda views resilience as a process leading to a resilient outcome (van breda 2017). earlier studies into resilience focused on individual factors, ignoring a child’s social ecologies (masten 2011). for ungar (2011), individual factors refer to self-efficacy, problem-solving skills, self-awareness, internal locus of control and self-confidence. this approach to resilience does not apply to the south african context where the concept of ‘ubuntu’ and collectivity are highly regarded (mawila 2022). on the contrary, ungar argues that resilience should be viewed holistically. ungar (2008) defines resilience as: … the child’s capacity to navigate their way to social, cultural, psychological and physical resources that sustain their well-being in the context of exposure to adversity and their ability to negotiate for these resources to be provided to them in culturally meaningful ways. (p. 225) this definition aligns well with the african proverb that ‘it takes a village to raise a child’. this proverb illustrates that an entire community must provide for and interact positively with children for them to grow in a safe and healthy environment. in the south african context, we cannot ignore the contributions of a child’s parents, teachers, peers, friends, religion and culture (nyamnjoh 2017). ungar states that resilience is possible through the interaction between individual, relational and contextual factors present in a child’s social ecology (2011). thus, ungar’s definition of resilience is the most suitable for this study, as looking at resilience through this lens highlights the importance of targeting all systems surrounding a child in order to foster resilience. this would involve all stakeholders working collaboratively to prevent or reduce the side effects of medication, including booking regular doctor’s appointments, consistently administering medication, monitoring and communicating with children and each other about side effects and titrating doses. children are rarely asked about their first-hand experience of living with the disorder and its medication. a vast amount of research into adhd over the last decade has centred on exploring parents’ and teachers’ knowledge and perceptions of adhd (fried & amrami 2023), with data traditionally collected from the children’s parents and teachers using parent and teacher rating scales (adaralegbe et al. 2022). although most children are prescribed medication as the first line of treatment, they are not active participants in their treatment. the united nations convention on the rights of the child (uncrc 1986) states, ‘children have the right to say what they think should happen when adults are making decisions that affect them, and to have their opinions taken into account’ (article 124). moreover, munongi (2016) argues that children should be seen as social participants and be allowed to share their ideas and make decisions about things that concern them. as few studies focus on the lived experiences of children living with adhd (fried & amrami 2023), it is paramount to respect children’s agency and their rights to participate in their treatment. the uncrc (1986:4) states that children should participate in the medical management of their adhd (article 12:4). participation includes taking an active role in discussions with health professionals (fumagalli et al. 2015). this indicates a gap in this research field, which this study sought to address by focusing on social justice and children’s agency and giving them a voice to share their experiences of taking adhd medication. thus, this study aimed to find out from children who have been diagnosed with adhd whether adhd medication was a risk or resilience factor for them. these insights could be used to inform interventions to combat risk factors accompanying the usage of adhd medication and to promote the resilience of children with adhd. research methods and design a qualitative, interpretivist approach was used in this study as it was suited to understanding the risk and resilience factors that the participants experienced because of their adhd medication (pope & mays 2020). qualitative research is best suited to increasing children’s participation and giving them the right to express their experiences on issues that affect them. thus, this research was carried out in such a way that prioritised the participants’ values, perceptions and feelings. a phenomenological design was used to involve the participants in the generation of data. in phenomenology, the researcher ‘collects data from the participants about their lived experiences, including their interpretations of those experiences’ (saunders et al. 2019:140). in this study, we sought to offer learners to express their lived experiences on whether adhd medication poses as a risk or resilience-enabling resource for children with adhd. the sampling site this study took place at a private, christian, mainstream school, which is located on the east rand. the school accommodates children from grade 000 to matric, and 558 children are enrolled at the school. the school’s ethos is based on the gospel values of respect, justice and freedom. the rights of all children and staff are respected, and the school takes the responsibility of protecting the children very seriously. the school promotes the quality and dignity of all staff and children. in addition, the school participates in outreach programmes, such as collecting money for the poor, children’s homes or animals. religious education is a compulsory subject, and everyone in the school community is required to attend weekly mass. the school’s demographics are not very diverse as about 84% of the children are black south africans, 9% are white, 3% are coloured, 2% are indian and 2% are classified as ‘other’. the term ‘coloured’ is a racial classification used in south africa to refer to an ethnic group with mixed ancestry, including african, european and asian heritage (thumbran 2021). although it is a private school, not all the children come from wealthy homes. some children do not live in the suburbs and instead live in townships. many children live with their grandmothers who raise them and pay their school fees from their pensions. as the researcher was employed as a health care practitioner at the research site, relational ethical dilemmas were anticipated. however, none became apparent as the participants had no difficulty in distinguishing between the researcher’s two roles (goodwin, mays & pope 2020). sampling method purposeful sampling was used in this study to select participants according to four criteria. nine participants met the following criteria. firstly, they had been diagnosed with adhd either by a psychologist, paediatrician, neurologist or psychiatrist and that they were prescribed adhd medication, as the study was about children’s lived experiences of adhd medication. secondly, the children had to be enrolled in a private, mainstream primary school, as this was the research site where data were collected. thirdly, they had to be between the ages of 8 years and 13 years old because this age group is historically underrepresented in studies on adhd. finally, they should not have been therapy clients of the researcher as this would constitute a multiple relationship. nine children participated in this study. seven participants were male, and two participants were female. the participants ranged from 8 years to 13 years old. in terms of race, most of the participants were black africans, with one child being coloured. all the children, except one, belonged to african cultural groups. eight of the children were christian and one was muslim. all the children, except one, speak an african language as their home language. however, they all speak english as their first additional language and attend a school where the medium of instruction is english. this information is represented in table 1. table 1: demographic characteristics of the study sample. data collection data were collected in english, a language the children were proficient in and the language of teaching and learning at the school. all data collection sessions took place at school, after school. they were audio-recorded with consent and assent from both the parents and children, and the recordings were stored electronically in a password-protected folder. this qualitative study focused on obtaining rich in-depth data, using three different data collection methods that allowed for the results to be triangulated, which increases the credibility of the findings (alele & malau-aduli 2023). these were semi-structured interviews, focus groups and children’s drawings. firstly, the nine participants were interviewed separately and asked several questions about the risk and resilience factors they experienced because of their diagnosis, in 30 minutes, individual, semi-structured interviews. in semi-structured interviews, the researcher develops a guide of interview questions but also encourages the participants to add more details to their answers (hinton & ryan 2020). the researcher asks questions that allow a participant to share their experiences, thoughts and perceptions (hinton & ryan 2020), which aligns with the aims of this study. interviews were chosen as a data collection method because they allowed children to be actively involved in the generation of knowledge by sharing their experiences and opinions about living with adhd. the children were asked the following questions in both the individual interviews and the focus groups: how does your medicine make you feel? what do you struggle with at school? what makes your adhd worse? what do you do at home if things get difficult for you? what do you need to cope better? how does your medicine help you? secondly, the participants were divided into two focus groups based on their ages. because some children were absent, there were three children in group 1 aged 8–10 years old and four children in group 2 between the ages of 10 years and 11 years old. the questions posed to the groups for discussion elicited the risk factors they experienced because of adhd medication and how this medication helped them cope. each focus group lasted 30 minutes. the session could not be prolonged because of the challenges of adhd for the participants. the purpose of focus groups is to find out more about an issue by generating data from a group of participants who have sought-after knowledge (tritter & landstad 2020). focus groups were chosen for several reasons. a focus group is used to generate data different from what is obtained in individual interviews. they can elicit information that the researcher has not anticipated to thicken the description (howitt 2016). collecting data from participants in a group context enables the researcher to examine the subjective meanings that the participants ascribe to their experiences (tritter & landstad 2020). the children’s shared diagnosis increased compatibility within the group, eliciting feelings of belonging and acceptance, and the peer environment made them more open to sharing their stories about a stigmatised topic (tritter & landstad 2020). in this way, the researcher was able to collect rich information from them about their experiences of living with adhd. focus groups are useful; they can be empowering as participants are given a voice and a platform to talk about issues that affect them. lastly, drawings were incorporated into the data collection as a child-friendly and age-appropriate technique to gain a deeper insight into their lived experiences. in a 1 hour group session, the participants were given a sheet of a3 paper, which they folded in half. on the left-hand side, they were asked to draw pictures or symbols of the difficulties they experienced related to adhd medication. on the right-hand side, they were asked to draw pictures or symbols of how the adhd medication made life easier for them. the participants were then asked to label their pictures. arts-based activities, commonly used in action research (ar), are effective data collection methods with children, as they allow age-appropriate participation and knowledge sharing (mayaba & wood 2015). these drawings provided visual data to complement interview findings. using a modified ‘draw-and-write’ technique (wood, theron & mayaba 2012), children described their drawings verbally because of potential challenges with writing or language ability (wood et al. 2012). data analysis the audio-recorded data collection sessions were each transcribed, word-for-word, using orthographic transcription (tritter & landstad 2020). thematic analysis (ta) is a technique used to analyse data by identifying codes and themes found within a qualitative dataset in such a way that trustworthy findings are produced (braun & clarke 2012). thematic analysis assists the researcher in making sense of the shared meanings and experiences of the participants by identifying themes (braun & clarke 2012). thematic analysis is useful as it draws out themes that are anticipated from a review of the literature, but it can also elicit other themes that can be added to an existing body of knowledge in a particular field of study (pope, ziebland & mays 2020). the data were analysed in six phases. in phase one, the recorded data were listened to several times and transcribed. in phase two, the researcher generated codes for segments of data. these codes are both descriptive (derived from what was said by the participants) and interpretive (derived from interpreting what was said by the participants) (braun & clarke 2012). in phase three, themes were generated from the codes. these consisted of data that answered a research question (braun & clarke 2012). the drawings were perused, and themes were assigned according to the labels provided by the participants. the data were interpreted in relation to the literature. in phase four, the themes were reviewed to check that they were credible. in phase five, the themes were named and defined. finally, the data were reported in phase six. ethical considerations ethical clearance was granted for the study by the research ethics committee of the faculty of education at the university of johannesburg (sem 2-2023-045). written permission was obtained from the school principal to conduct research at the school after school hours. informed, written consent was obtained from the children’s parents or guardians. thereafter, the study was explained to the participants, and they could assent, in writing, or decline to participate in the study. the participants were told that they could withdraw assent at any time without consequences. protecting research participants is paramount, especially in qualitative studies involving vulnerable participants, such as children. because the participants knew each other from attending the same school and working in groups, their involvement in the study was not fully anonymous. to address this, firstly, the researcher asked them to keep each other’s identities and contributions confidential, explaining this in an age-appropriate way and asking them to sign a non-disclosure form. secondly, talking about their experiences could elicit strong emotions (arifin 2018). therefore, an educational psychologist was on standby during the data collection sessions in case the participants experienced distress while talking about the risks they experienced related to adhd medication. none of the participants reported distress during or after data collection, and none of the children needed to consult the available psychologist. pseudonyms were used, and data were stored securely to ensure confidentiality and anonymity. results the findings of this study are presented according to the themes that were identified through the analysis of the individual interviews, focus groups and drawing activities. these three themes reflected the participants’ views on whether adhd medication was a risk or resilience factor. the first theme identified was experiencing somatic side effects of adhd medication. the second theme was not taking prescription medication for adhd, and the third theme was the benefits of taking prescription medication for adhd. experiencing somatic side effects of attention deficit hyperactivity disorder medication the findings showed that the participants identified the side effects of their adhd medication as a risk factor. as the children were very young, they only shared their experiences of somatic side effects. the participants reported that their medication suppressed their appetite, caused bouts of diarrhoea, affected their ability to fall asleep and stay asleep, resulted in frequent headaches and stomach aches, and affected the way they felt by making them feel ‘serious’ and less playful. in the focus group discussion, the participants were asked, ‘how does your medicine make you feel?’ one of the participants shared that his medication caused stomach upsets. he said: ‘on the weekends, i always have to watch diarrhoea [sic].’ (praise) another shared that his medication affected his appetite and caused him to experience headaches and tummy aches, saying: ‘the doctor says you will not eat because of the medicine. it makes my head and tummy sore.’ (harry) someone else described her experience on how adhd medication has severely resulted in a lack of appetite. she said: ‘well, i can be very hungry, but i don’t feel like it [eating], that my [sic] tummy can even be making noises, and i won’t feel like it. i don’t drink the whole day. i don’t eat the whole day, and i wake up sometimes in the middle of the night.’ (tiana) the effect the medication had on them physically and how it adversely impacted their concentration, was described as follows: ‘uh, it makes you feel like, ok, you lose your appetite, it makes you feel serious as in, [sic] if someone talks to you, you feel like you can’t concentrate properly and you’re just very serious. i would not be having [sic] any appetite.’ (tom) furthermore, one of the participants mentioned that he also experienced headaches and stomach aches and that he lost his appetite. he added: ‘uh, it gives me headache [sic] and uh stomach-ache sometimes. and then sometimes it takes away my appetite’. (jake) the participants’ drawings also depicted and labelled the above-mentioned side effects as follows: harry’s picture (figure 1), labelled, ‘when i drink my pills it makes me full. it makes my tummy sore’. tiana found it difficult to draw the way her medication suppressed her appetite and chose to describe it in words, ‘lost appetite [sic]’ (figure 2). figure 1: when i drink my pills, it makes me full. it makes my tummy sore – harry. figure 2: lost appetite – tiana. ashley, a 9 year old female, labelled her picture (figure 3), ‘not eating breakfast’. furthermore, tiana drew a picture (figure 4), labelled, ‘makes me very serious’. figure 3: not eating breakfast – ashley. figure 4: makes me very serious – tiana. not taking prescription medication for attention deficit hyperactivity disorder from the results above, it is evident that the participants experienced several somatic side effects because of their adhd medication and that these risks need to be mitigated as this causes children taking adhd medication to feel unwell in their quest to quell their symptoms. however, the participants also claimed that not taking their medication presented risks to their functioning at school. they shared how difficult it was to remember things, to focus on their schoolwork and to concentrate in class. to illustrate, in the individual interviews, the participants were asked, ‘what do you struggle with at school?’ one shared how they struggled to concentrate in class when they did not take his medication: ‘i sometimes forget so it’s hard for me to remember because other things [are] distracting me in the class. many kids do not close their uh pencil bags; they mostly fall down [sic] on the ground and then now i keep on, i cannot focus on my work [without taking medication], especially when i lose concentration on my favourite subjects.’ (praise) furthermore, the participants described their difficulties with executive functions at school when they did not take their medication. executive functions include remembering things, sustaining attention when studying for tests or exams and emotional regulation. in the focus group discussion, the participants were asked: what kinds of things are difficult for you at school? one of the response showed that they found executive functions, such as remembering things and working memory, difficult. they said: ‘remembering things is difficult if i don’t take my pills and i struggle with maths.’ (praise) another’s reply showed that they found it difficult to sustain attention when studying for tests or exams, in addition to difficulty keeping track of their personal belongings: ‘um, some of the some of the times [sic] it’s studying, sometimes. some of the times when i don’t take my pills, i feel more sleepy and tired during the day when i’m at school, also losing things often.’ (messi) one shared that he found it difficult to study and that he struggled with emotional regulation; he felt that he took things more personally than his peers and became easily upset by little things. he shared the following: ‘hmm, just studying, ma’am. ma’am, not taking my meds, can one of the side effects be anger? ma’am, most of the times [sic] i take things more seriously, out of it, i take things more personally than other people.’ (jake) when the participants were asked to draw pictures of what makes their adhd worse, they reported that not taking their adhd medication was detrimental to their functioning. tiana’s picture (figure 5), labelled, ‘when i don’t take my tablet’, illustrates her opinion that not taking her medication makes her adhd worse and that her medication protects her against her adhd symptoms. of particular significance is praise’s picture (figure 6), which he labelled, ‘when i don’t drink my pills, i go crazy’. praise’s drawing captured what his behaviour looked like when he did not take his medication. he drew himself acting ‘crazy’, standing on a chair in the classroom, illustrating his hyperactive and impulsive behaviour there. figure 5: when i don’t take my tablet – tiana. figure 6: when i don’t drink my pills, i go crazy – praise. the benefits of taking prescription medication for attention deficit hyperactivity disorder participants spoke about the role their adhd medication played in facilitating their resilience in the face of the risks associated with their diagnosis. it is evident from the data collected that the participants felt that their medication was beneficial in improving their ability to pay attention, focus and perform better at school. their medication was a coping mechanism for children presenting with adhd. in the individual interviews, participants were asked, ‘what do you do at home if things get difficult for you?’ one of the participants’ reply illustrated how they rely on their medication to help them feel more alert: ‘… sometimes when i’m tired and i take my medicine then i can concentrate …’ (tom) another question the participants were asked was, ‘what do you need to cope better?’ they all responded that their medication helped them to cope and bolstered their resilience. one replied: ‘i think medicine.’ (tom) another agreed: ‘to have my vitamins [medicine].’ (messi) someone else responded: ‘taking my pills.’ (jake) another also concurred, saying: ‘uh, i just need pills.’ (thiago) in the focus group discussions, the participants were asked how their medication helped with their core adhd symptoms of inattention, hyperactivity and impulsivity. one of the participants expressed that their medication helped them concentrate and listen better when someone spoke to them and said: ‘it [medication] makes you feel serious as in if someone talks to you, you feel like you can concentrate properly … and you’re just very serious.’ (jake) someone else described the benefits they felt from taking their medication. they reported that their medication helped them to focus and study for longer periods. they said: ‘it usually helps me to stay awake, focus and it keeps my energy up for me to study properly.’ (messi) one agreed: ‘it keeps me awake and helps me focus.’ (tom) another stated they experienced feeling smarter and more attentive when they took their medication and said: ‘it makes me feel a little more smart [sic]. and sometimes energetic.’ (ashley) in the drawing activity, the participants were asked, ‘what people, places or things make your adhd easier to cope with?’ the participants’ drawings showed that they understand that taking their medication is beneficial in terms of mitigating their adhd symptoms. tom lbelled his picture (figure 7), ‘taking my pill’. figure 7: taking my pill – tom. the above results clearly showed that the participants recognised that their medication helped to alleviate their adhd symptoms and was therefore a resilience enabler. they reported that they could feel a difference on days when they took their medication and days when they did not. they pointed out that their medication helped them to cope with symptoms of inattention, hyperactivity and impulsivity. there was a consensus among the participants that they preferred to take their medication, as it helped them cope despite the adversities they faced. discussion the findings of this study provide insights into children’s experiences of taking adhd medication. in this study, medication was found to be both a risk and a resilience factor for children with adhd. the findings revealed that experiencing somatic side effects of adhd medication and not taking prescription medication for adhd were identified as risk factor themes, while the benefits of taking prescription medication for adhd were identified as resilience factors. this study confirms that risk and resilience factors are subjective (ungar 2019). what one child might perceive as a protective factor, another child might perceive as a risk factor, depending on the child’s context and situation (van breda 2018:10). for example, naslund et al. (2014, as cited in ungar 2019:5) found that youth with severe mental illness experienced peer support through social media to be a protective factor. however, increased internet usage among youth who do not have a mental illness could contribute to poor mental health (ungar 2019). the participants of this study listed several somatic side effects their prescription medication caused. these included difficulty falling asleep and staying asleep, appetite suppression, gastrointestinal complaints, and head and stomach aches. these side effects can negatively affect children’s daily lives as feeling unwell could interfere with their ability to tend to their schoolwork or play. in this case, adhd medication had adverse effects on children. the somatic side effects described by the participants in this study are supported by the literature. to demonstrate, maguvhe et al. (2021) found that children taking adhd medication complained of similar side effects. in their study, santos et al. (2021) found that stomach pain is a side effect of adhd medication. as noted in this study, participants also reported that their medication affected their sleep. they frequently had difficulty falling asleep and staying asleep at night. furthermore, israel et al. (2020) found a link between poor sleep because of adhd medication and poor academic performance. the adverse impact of medication on appetite was repeatedly expressed by participants of this study. a study by balan-moshe and gothelf (2021) elucidated that both sleep disorders and poor appetite were side effects of the prescription medication for adhd. contrary to previous studies that reported the impact of medication on social, emotional, academic (chang et al. 2019) and psychological functioning (storebø et al. 2018), this study only revealed somatic side effects of adhd medication. one reason for this could be that the participants in this study were very young, ranging from 8 years to 13 years old, and might not have the cognitive ability to name or identify these side effects. moreover, existing studies show that children with adhd struggle with emotional regulation, which relates to difficulty experiencing emotions and expressing emotions (israel et al. 2020). the participants reported that there were days or periods when they did not take their medication. they identified not taking their prescription medication for adhd as a risk factor because their adhd symptoms of inattention, hyperactivity and impulsivity were left untreated. they reported that paying attention, focusing, remembering and controlling their anger were more difficult to do on days that they did not take their adhd medication. roth et al. (2017) found that children with adhd struggle to stay focused on a task, remember instructions, complete schoolwork or chores, and sustain focus. studies show that children with adhd are disorganised and often lose their belongings (apa 2022:71; strålin et al. 2022). the findings of this study echo previous studies that showed that children with adhd have difficulty regulating their emotions, which results in them being reprimanded or punished regularly (israel et al. 2020). poor emotional regulation often results in conflicts that affect their relationships with their parents, teachers and friends (lopez-pinar et al. 2018). sayal et al. (2018) also found that children with adhd display externalising difficulties such as aggression and oppositional behaviour, which cause conflict in their relationships. the findings affirmed that the participants viewed the benefits of taking prescription medication for adhd as protective against the risks posed by their diagnosis. the participants explained how their medication made them feel serious, less playful and better able to concentrate. they shared how their medication helped them stay awake and focused. they reported that they often took their medication when they felt that they were struggling to cope. these findings align with those of ringer (2020), who found that children viewed their adhd medication as helpful in controlling their symptoms. according to the national institute for health and clinical excellence (nice 2018) guidelines, the gold standard of treatment for adhd is a combination of pharmacological and psychosocial interventions. pharmacological interventions are still the most widely utilised by health professionals, and studies show that they help reduce the core symptoms of adhd, including risky behaviours, and improve a child’s social functioning (coghill, werner-kiechle & farahbakhishian 2020). left untreated, adhd can result in adverse effects on a child’s life, which also impacts their families and includes poor performance at school, school dropout, poor employment prospects and possible criminality (kellock 2020). academically, children with adhd are prone to low academic achievement, school failure and dropout (lopez-pinar et al. 2018). these poor prospects could extend into adolescence and adulthood. difficulties in concentration may lead to job loss and contribute to high unemployment in south africa (israel et al. 2020). unemployment may drive individuals towards criminal activity, which could result in an overcrowded prison system (sayal et al. 2018), homelessness an incarceration (kellock 2020), which could in turn burden their family’s finances, the economy and society (nyundo et al. 2020). attention deficit hyperactivity disorder is also linked to antisocial personality disorder, substance abuse and increased incarceration rates (apa 2022). additionally, adhd increases the risk of major depression, bipolar disorder and suicidal behaviour (nyundo et al. 2020). early identification and treatment are essential to mitigate these long-term consequences. limitations and recommendations for further research although the findings of this study have made a valuable contribution to research, this study had limitations. in terms of the sample, a key limitation of the study was its small sample size from a single school, which may affect the generalisability of the results. however, by using multiple qualitative data collection methods to triangulate findings (alele & malau-aduli 2023), the study still provided valuable insights into children with adhd. the first researcher, although an insider at the study site, addressed potential bias by clarifying her role to participants and parents and interpreted findings using an established resilience framework to ensure objectivity (braun & clarke 2022). because the participants knew each other from the same school, complete anonymity could not be ensured. to address this, the researcher asked the children to keep each other’s identities and contributions confidential, explaining the importance of privacy in age-appropriate language (pope & mays 2020). in terms of methodological limitations, two children were absent from the focus group discussions but participated in individual interviews and a group drawing activity. using multiple data collection methods ensured that the study’s data remained robust. although the group setting limited participant anonymity, the peer interactions led to richer data. during group activities, younger participants with adhd became distracted and required breaks, but this did not negatively affect the quality or richness of the data collected for the study. this presented a procedural limitation. future research should cover more school types (government, rural, non-religious) and use larger, more diverse samples from several south african provinces. studies should also include teenagers and use data collection methods suited to their attention span, like shorter sessions with breaks. conclusion this study investigated whether adhd medication is a risk or resilience factor for children diagnosed with adhd. this study deepens our understanding of resilience in south african children with adhd. using qualitative, child-centred methods and allowing children to share their experiences and participate in treatment decisions aligns with principles of social justice. guided by ungar’s socio-ecological framework and the philosophy of ubuntu, the research demonstrates that resilience is shaped collectively and that multidisciplinary teamwork is essential to support children with adhd. the findings of this study revealed that adhd medication can serve as both a risk and a protective factor for children diagnosed with adhd. participants in the study reported that they experienced physical side effects from adhd medication, which resulted in frequent headaches and stomach aches, and affected the way they felt by making them feel ‘serious’ and less playful. to address these, children with adhd would benefit from understanding their challenges and working collaboratively with parents, teachers and health professionals. multidisciplinary support involving parents, teachers, health professionals and service providers is recommended. enhanced monitoring by all stakeholders, careful dose adjustments by doctors, and proactive, consistent management of medication by parents are suggested to reduce risks and improve outcomes for children on adhd medication. parents need to be more proactive in mitigating these risks by ensuring open communication with their children and regularly scheduling doctors’ visits to assess the effects of medication. this will balance children’s rights to participation with the principle of acting in their best interests. on the contrary, the participants shared that not taking their prescription medication for adhd was a risk to their functioning. although the participants identified that they experienced side effects of adhd medication as a risk factor, they also identified the benefits of taking their prescription medication for adhd. they expressed a need for consistent access to adhd medication. parents should take note of this important finding and be more consistent in administering their children’s adhd medication. parent education is necessary to ensure consistent administration of medication to improve the outcomes for children taking adhd medication. the parents of the children in this study could afford privately funded medical aid. however, many south african families rely on government health services. this highlights a need for improved access to mental health care to foster resilience in children with adhd. acknowledgements this article is partially based on the author’s thesis entitled ‘risk and resilience factors of children living with adhd in a mainstream primary school’ towards the degree of doctor of education in educational psychology, university of johannesburg, south africa on 30 october 2024, with supervisor dr daphney mawila-chauke. the authors would like to acknowledge all the children who willingly participated in this study as well as their parents who consented to their involvement in this study. the authors would also like to thank ruth nicola for editorial assistance. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.c. is the first author and was primarily responsible for conceptualising the study, collecting the data, conducting the analysis, and writing and editing the manuscript. d.m-c. provided supervision, guidance, discussed the results and critical revisions, and is listed as the second author. the final version for submission and publication was edited and approved by both authors. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the findings of this study are not openly available because of reasons of sensitivity and are available from the corresponding author, d.m-c., upon reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. they do not necessarily reflect the official policy or position of any affiliated institution, funder, agency or publisher. the authors are responsible for this study’s results, findings and content. references adaralegbe, n.j., okobi, o.e., omar, z.t.o., segun, e., 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1–9. https://doi.org/10.2989/17280583.2015.1128437 wood, l., theron, l. & mayaba, n., 2012, ‘read me to resilience: exploring the use of cultural stories to boost the positive adjustment of children orphaned by aids’, african journal of aids research 11, 225–239. https://doi.org.10.2989/16085906.2012.734982 yearwood, e.l., pearson, g.s. & newland, j.a., 2021, child and adolescent behavioural health: a resource for advanced practice psychiatric and primary care practitioners in nursing, john wiley & sons, hoboken, nj. introduction research design and methodology ‘lifting the fog’ – proposed approaches to address issues of epistemic injustice in healthcare concluding thoughts and call to action acknowledgements references about the author(s) mpoe j. keikelame independent qualitative researcher, bloemfontein, south africa citation keikelame, m.j., 2025, ‘”navigating the fog”: a reflection on epistemic injustice in epilepsy treatment and care’, african journal of disability 14(0), a1698. https://doi.org/10.4102/ajod.v14i0.1698 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper ‘navigating the fog’: a reflection on epistemic injustice in epilepsy treatment and care mpoe j. keikelame received: 20 feb. 2025; accepted: 19 aug. 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). introduction this reflective article draws on findings from my qualitative doctoral research project, conducted between 2012 and 2016. the project explored perspectives and subjective experiences of adults living with epilepsy and their caregivers in a marginalised urban township in cape town. the study revealed a range of health system factors that impede access to appropriate treatment and care. these included factors such as language barriers and communication difficulties, dismissal of patients’ concerns, loss of patients’ records and negative attitudes of healthcare professionals (hcps). consequently, some patients reported experiencing medication side effects and undesirable physical symptoms that affect their lives (keikelame & swartz 2013). adults with epilepsy, who took part in the study, received their treatment and care from a local community health centre (chcs) in cape town and support from the local branch of the national epilepsy organisation. the chcs are typically staffed by multidisciplinary primary health care (phc) teams – comprising nurses, doctors, pharmacists and allied health workers and often operate 24/7 with emergency and obstetric services (bresick, von pressentin & mash 2019). the strengths of the south african (sa) public health sector are that it comprises primary, secondary and tertiary health services, which are managed by the different provincial departments and monitored by the national department of health. it also has different policies, strategies and charters that are aimed at strengthening the public health system performance and enhancing quality service delivery. however, the sector continues to face major health system factors. these factors include negative staff attitudes, long waiting times, unclean facilities, fragmented services, inadequate supply of medicines and poor infection control and standards, which can compromise the safety and security of both staff and patients (abrahams, thani & kahn 2022; malakoane et al. 2020). concerning epilepsy, approximately 500 000 individuals in sa live with the condition, highlighting the urgent need for increased awareness and the availability of effective, affordable treatment options accessible treatment (epilepsy sa, intersectoral global action plan [igap] 2023). this includes efforts to combat stigma and improve access to care by the world health organization (who) igap 2022–2031 (leitinger et al. 2025). the challenge is further exacerbated by a shortage of neurologists and insufficient training among general practitioners, which hampers effective management and care for patients (epilepsy sa igap 2023; rosenberg & leichter 2019). to improve epilepsy management at the phc level in sa and to address the knowledge gap among hcps, the standard treatment guidelines (stgs) have been revised. these stgs now emphasise treatment based on epilepsy types that are classified by the international league against epilepsy (ilae), rather than on specific population groups (sa department of health 2025). despite advances in epilepsy treatment, the epilepsy treatment gap (etg) remains alarmingly high. this gap is wider in lowerand middle-income countries (lmics) than in high-income countries and more pronounced in rural than urban areas. this persistent disparity underscores the ongoing challenges in ensuring effective epilepsy care for all populations (wagner et al. 2020). to address this, a regional pilot course called epilepsy training in adult medicine (etam) will be rolled out across africa. the goal is to enhance the knowledge and skills of primary care providers. organised by ilae-africa, this training is part of a broader effort to improve epilepsy care across the continent. it involves participation from sa and other african countries (sa department of health 2025). in this critical reflection, i use the metaphor of the ‘fog’ – which, from my reflection, vividly symbolises the challenges within the chc from which my study participants accessed their treatment and care. these obstacles are reflected in participants’ stories, which, from my reflection, align with the literature on epistemic injustice. i argue that recognising and addressing these health systems barriers can lift this fog and can enable an inclusive and equitable healthcare that addresses the holistic needs of people with epilepsy and those with other impairments. research design and methodology i employed a qualitative exploratory design guided by kleinman’s explanatory models framework (kleinman 1980; kleinman & benson 2006) and bronfenbrenner’s socio-ecological model (bronfenbrenner 1979, 1989). participants included adults with epilepsy, their carers (spouses, siblings, friends, neighbours), home-based carers and traditional healers, purposively and conveniently sampled. the recruitment process was conducted with the assistance of two field assistants and through my direct personal interactions with adults living with epilepsy and their carers during their follow-up visits at the chc, and through the snowball approach. consent procedures included translating the consent leaflet into participants’ languages, engaging local interpreters familiar with the spoken language, clearly explaining the study’s purpose, and allowing sufficient time to support informed decision-making. participation was voluntary, with rights explained, and signed consent obtained and reaffirmed before interviews and focus group discussions. for direct observation, verbal consent was secured, and ethical and cultural considerations were considered. data collection was carried out between 2012 and 2013. methods included direct observation of clinical encounters between patients with epilepsy and a clinical nurse practitioner, pharmacist, and health educator from the local epilepsy organisation at the chc; face-to-face, in-depth interviews conducted in participants’ homes; and focus group discussions held at accessible venues within the study setting. thematic analysis was conducted following braun and clarke’s (2006, 2022) approach, and strategies to enhance trustworthiness included reflexivity, member checking and peer debriefing with relevant stakeholders at each phase of the project. ethical approval was obtained from the local health research ethics committees. to better understand these complex health system factors and epistemic injustices, i reflect on the methodological influences that shaped my approach and interpretation. mentorship and methodological influence leslie swartz’s mentorship has been instrumental in shaping my research approach and fostering ongoing critical self-reflection. i often described him as ‘an elephant’ in my youtube video talk entitled ‘my phd supervisor was like an elephant’ (keikelame 2018a) – a metaphor capturing his impactful presence and unwavering support. this metaphor, shared on youtube, reflects both his influence and the strength of his mentorship. he emphasised principles of genuine collaboration, respect for community knowledge and social justice – values that profoundly shaped my interactions with participants and community partners directly affected by this research. he encouraged me to adopt a manuscript-style thesis, comprising published peer-reviewed articles (keikelame 2016). this approach enhanced the visibility and accessibility of my findings, allowing my research to reach a broader audience across various journals and thereby increasing its impact. throughout the research process, leslie urged me to remain inquisitive during fieldwork, fostering ongoing reflection to ensure meaningful data interpretation. this inquisitiveness reminded me that cultural factors – though often overlooked in research (smith 2021) – were central to how participants understood and experienced the phenomena under investigation (keikelame 2018b). by co-constructing knowledge with leslie, local field researchers and participants, i was also prompted to engage with decolonising research literature from scholars such as smith (2021) and chilisa (2020). this engagement helped me to draw critical lessons from the fieldwork that could inform a decolonising research process – particularly with respect to power dynamics and the centrality of respect (keikelame & swartz 2019). this personal reflection on mentorship and methodology leads into a broader discussion of epistemic injustice, a key theoretical lens through which i critically reflect on these health systems’ factors and how they align with epistemic injustice literature. overview of epistemic injustice in healthcare epistemic injustice, as defined by fricker (2007) in alcalay (2024:115), involves the unfair dismissal or devaluation of individuals’ knowledge claims, which undermines their credibility and capacity to contribute meaningfully. okoroji et al. (2023) note that such injustices are common among marginalised and vulnerable populations, whose lived experiences and insights are often ignored or dismissed. these dismissals can lead to misunderstandings of patients’ realities, inadequate care and the reinforcement of social inequalities. fricker (2007), as cited by hunt and blease (2024:2–3), identifies two key types of epistemic injustice in healthcare that serve as significant barriers: testimonial injustice and hermeneutic injustice. testimonial injustice occurs when healthcare providers dismiss or underestimate patients’ experiences because of biases, thereby undermining their right to proper care. hermeneutic injustice arises when individuals or groups struggle to articulate or interpret their experiences because of a lack of appropriate language, concepts or interpretive resources (carel & kidd 2014). the scenarios provided below exemplify the two types of epistemic injustice. scenario 1: ignoring patients’ concerns one adult male whom i interviewed expressed how he raised his concerns about the medication side effects and the physical symptoms that he experiences from living with epilepsy, and how have affected him: ‘since i started seeing the doctors, it’s as if they are not interested. that’s the way i see it … i tell the doctor about my fatigue … but i don’t know if they take note of that or not. another one said, when i told him i feel weak. i just become dizzy sometimes when i take these tablets … he said that it is something that is common …’ (male participant aged 42). (keikelame & swartz 2013) in this scenario, the patient raised his concerns as illustrated in his personal account, and the response that his concerns are common is inadequate. this, from reflection, exemplifies testimonial injustice – a type of epistemic injustice where patients’ concerns are dismissed or ignored. such dismissals can result in some patients not adhering to seizure treatment, particularly when side effects and physical symptoms significantly affect person’s quality of life. by not receiving adequate counselling, such patients may disengage from formal healthcare and may seek alternative treatment from traditional healers. however, seeking healthcare from traditional healers is a fluid practice shaped by a variety of cultural factors, rather than merely a response to dissatisfaction with the biomedical system. this fluidity highlights how patients’ decisions to consult traditional healers vary according to individual circumstances, illness experiences, cultural influences, and personal preferences. interpreting such practices solely through the lens of dissatisfaction risks pathologising them and overlooking their cultural significance. these healers play a vital role in epilepsy treatment and care despite challenges in collaboration with biomedical practitioners (keikelame & swartz 2015). scenario 2: language barrier between a xhosa-speaking patient and a healthcare professional i observed a language barrier between a xhosa-speaking patient and a xhosa-speaking nurse. the patient used a metaphor – ‘i want to wash the heart’ [ndifuna kuhlamba intliziyo] – to describe his illness experience. the clinical nurse practitioner did not understand the metaphor, even after the patient repeated it, nor did she seek clarification or consult another professional (keikelame & swartz 2013:39). this scenario highlights how dialect differences, regional expressions or cultural metaphors – common in rural communities – can create interpretive barriers. such barriers may also stem from a lack of resources, like interpreters or professional inaction, leading to miscommunication and compromised care. in sum, this scenario suggest that when patients leave consultations feeling that their concerns have not been listened to, or are ignored or misunderstood, underlying epistemic injustices may be at play. systemic issues such as language barriers and the absence of interpreters align with the concept of epistemic injustice (wilmot 2024). addressing these issues is crucial, as they can leave patients feeling confused, unheard and unsupported, underscoring the need for strategies aimed at mitigating epistemic injustices within healthcare systems. the following section proposes approaches aimed at ‘lifting the fog’ and fostering more inclusive healthcare. ‘lifting the fog’ – proposed approaches to address issues of epistemic injustice in healthcare while strategies such as integrated person-centred care (coulter & oldham 2016), asset-based approaches (wreford et al. 2024) and decolonising methodologies (chilisa 2020) are essential for addressing health systems’ factors that may be suggestive of epistemic injustice, their effective implementation must be understood within the broader systemic context. healthcare providers operating in resource-constrained environments such as the public health system in sa, face structural barriers – such as high patient loads, limited staffing and inadequate resources – that can impede the realisation of these approaches. recognising and leveraging patients’ resources and knowledge requires systemic reforms, including supportive policies, equitable resource allocation and organisational change (abrahams et al. 2022; malakoane et al. 2020). without addressing these underlying systemic issues, any efforts risk remaining superficial or unfeasible. by tackling these structural challenges, we can create healthcare environments that truly empower providers to deliver inclusive, respectful, and culturally sensitive care – transforming clinical encounters from sites of injustice into spaces of equity and agency. concluding thoughts and call to action in this article, i employed the metaphor of ‘fog’ to critically reflect on how the health system factors contribute to epistemic injustice, emphasising the urgent need to lift this obscuring barrier. achieving this requires adopting a resolute commitment to a person-centred approach and shifting the focus from deficits to personal strengths and resources. crucially, decolonising approaches must be embraced not only to challenge entrenched power imbalances and ensure cultural relevance, but also to expose and dismantle epistemic injustices, thereby fostering genuine collaboration grounded in humility, respect, and social justice. furthermore, active engagement from passionate advocates, activists, hcps and researchers is vital to catalyse collaborative efforts toward transformative change within the healthcare systems. to realise this vision, targeted reforms are necessary to improve resource allocation, infrastructure and service integration, thereby ensuring equitable access and high-quality care for all. equally essential is investing in comprehensive epilepsy management training and transforming the healthcare system into one that respects individual agency and delivers fair, just care for marginalised populations and those living with epilepsy. acknowledgements i gratefully acknowledge the invaluable contributions of traditional healers, adults living with epilepsy and their family members and friends, the general practitioners and home-based carers. my special thanks to professor leslie swartz for his mentorship and support, as well as to my co-authors and colleagues at the university of cape town (uct), and ms jacqueline gamble for editing. competing interests the author declares that she has no financial or personal relationships that may have inappropriately influenced her in writing this article. 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and its determinants in rural south africa’, seizure 80, 175–180. https://doi.org/10.1016/j.seizure.2020.06.013 wilmot, n.v., 2024, ‘language as a source of epistemic injustice in organisations’, journal of business ethics 195, 233–247. https://doi.org/10.1007/s10551-024-05644-9 wreford, a., birt, l., whitty, j.a., hanson, s., conquer, s. & wagner, a.p., 2024, ‘cost and economic evidence for asset-based approaches to health improvement and their evaluation methods: a systematic review’ bmc public health 24(1), 814. https://doi.org/10.1186/s12889-024-18231-4 abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) anna j. hugo department of language education, arts and culture, college of education, university of south africa, pretoria, south africa nafiza mobara department of language education, arts and culture, college of education, university of south africa, pretoria, south africa citation hugo, a.j. & mobara, n., 2024, ‘the voice of a group of teachers in full-service schools in south africa’, african journal of disability 13(0), a1134. https://doi.org/10.4102/ajod.v13i0.1134 original research the voice of a group of teachers in full-service schools in south africa anna j. hugo, nafiza mobara received: 13 oct. 2022; accepted: 04 june 2023; published: 28 feb. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: full-service schools (fsss) were introduced into the south african school system as part of the movement towards inclusive education. objectives: the authors of this article embarked on a study to obtain the opinions and feelings of a group of teachers about fsss and inclusive education. thus, the ‘voice’ of these teachers could be heard. method: the research followed a qualitative approach using group discussions and classroom observations. triangulation was used to verify information. results: the data revealed that the teacher participants had definite opinions and feelings about inclusive education in fsss and their classroom experiences also came to light. the themes arising from the research are the teachers’ opinions about teaching in fsss, support from the school and the school management, discipline in the schools, teaching methods, language issues, religion and parent involvement. conclusion: it is clear that the specific needs of teachers whose schools were transformed into fsss will have to be attended to. the teachers are the ones who have to apply inclusive education in their classrooms, and it is essential that teachers’ teaching and personal needs in full-service classrooms are addressed. contribution: the article contributes to a better understanding of the teachers’ important role in fsss and the problems experienced by the teachers. this aligns with the ethos of inclusive education and human rights included in the scope of the journal. keywords: full-service schools; teachers’ opinions; support from management; teaching methods; language; religion. introduction the hail of real democracy in south africa in 1994 also meant that the equality and the worthiness of each citizen were entrenched in the new constitution. from the side of the government, many attempts were made, and policies were introduced to acknowledge human rights in all spheres of life. this included the terrain of education. regarding learners and students with disabilities, also referred to as impairments, a new direction that arose internationally was followed and that meant the introduction and acceptance of policies about inclusive education. this direction was new in south africa and many questions and concerns were raised especially by teachers. it became clear that although inclusive education was the new way to address the learning and school needs of learners with impairments, many people involved in education and especially teachers had concerns. the continued role of special schools and the introduction of so-called full-service schools (fsss) were among the many concerns raised. teachers are the persons who have to put the policies of the various departments of education into operation. their acceptance and application of policies are thus pivotal for the new policies to become successful. the northwest province of south africa where the research was conducted has four districts and annually an amount of more or less r2 million is awarded to schools to be adapted to become fsss. full-service schools full-service schools were introduced in south africa to support and enhance inclusive education and the idea was that the fsss should be in the neighbourhood of learners with barriers to learning and development. according to the philosophy of inclusive education, all learners can learn if the support that they require is provided. therefore, fsss should provide support, resources and expertise to any learner who needs it in order to make progress at school. according to the new policy, fsss would not replace special schools but will provide moderate levels of support (south african department of education 2010:21). it is envisaged that fsss should be places where diversity and human rights and relations are appreciated and the necessary support systems for all the learners are available (south african department of education 2011:4). this could help to minimise the stigma associated with learners with mild physical impairments and with some form of learning problems. inclusive education was introduced to the education system in south africa with the implementation of education white paper 6, which has since become the official policy. in education white paper 6, it is discussed how mainstream schools can be changed to fsss (south african department of education 2005:2–6). in 2012, the department of education (doe) admitted that some of fsss did not operate as functional fsss in spite of millions of rand allocated to fsss each year (northwest department of education 2012:8). it is a well-known phenomenon that the people who struggle to implement policies drawn up by the state and its various departments are often not consulted once the policies are implemented. teachers and new education policies in recent years, many new policies and changes have been introduced in the south african education system. it became clear that, as often happened in the formulation of new education policies, no or little consultation with teachers was done, which is something that occurs in many countries. gozali et al. (2017) state that although education policies are developed by policymakers and researchers, there is a trend that international organisations such as the united nations educational, scientific and cultural organization (unesco) and the world bank could play a role in driving the direction of education: ‘yet while the importance of mobilizing all stakeholders has been long acknowledged, the voices of researchers, policymakers, and international organizations continue to dominate the scene, while the voices of teachers, the most important school input influencing student outcomes continue to be neglected both in literature and in policy-making.’ (p. 32) how well these new policies and changes in the education system work have to be researched as this is the only way in which the success of the new policies can be assessed. in the school system, teachers are on the frontline to apply the new policies and changes, but there is a lack of research about teachers’ opinions about the viability of new policies. in this article, the experiences of teachers in fsss in one province of south africa will be discussed. it provides insight into the opinions, albeit on a small scale, of a group of teachers teaching in fsss in a province in south africa. it is an attempt to let the voice of teachers in fsss be heard so that the successes and failures of fsss could be brought to the light and, where necessary, changes in the policies about fsss could be introduced. research methods and design in the research discussed in this article, a qualitative approach was used to collect the data because a qualitative approach provides researchers the opportunity to be sensitive to the human world. researchers’ own humanity helps them to understand and interpret what the participants convey, as well as their circumstances (babbie & mouton 2007:50). qualitative research can elucidate what happens in true-to-life situations such as teachers’ interactions at school (denzin & lincoln 2020:3). leech and onwuegbuzie (2007:558) also state that qualitative research is very useful to obtain insight into problematic or difficult experiences of people and the significance that individuals attach to the experiences. data collection in this research, informal observations written down as field notes and focus group interviews were used. using triangulation, it can be ensured that rich and comprehensive information could be obtained. when triangulation is used, the phenomena in the research could also be understood more fully (leech & onwuegbuzie 2007:557). this helped the researchers to not only capture information about the opinions and experiences of the teachers but also information regarding their emotions and feelings. the participants of this research were 20 teachers from four fsss in a province in south africa. purposive sampling was used as the teachers were selected based on their teaching experience in fsss and thus the researchers believe that the selected group of teachers could provide a richness of knowledge. this aligns with sargeant’s (2012:2) opinion that qualitative research helps researchers to purposely select participants who will help them to understand the research topic. focus group discussions were conducted, and field notes were made during observation, which provided the opportunity to capture the participants’ emotions and body language as well. four focus group discussions were conducted, and each focus group consisted of five teachers. there were 16 female and 4 male participants, and they taught grade r to grade 7. the discussions took more or less an hour depending on the eagerness of the participants to share their opinions. each participant was observed, thus 20 classroom visits were completed. the classroom observations were planned for half an hour, but sometimes it was longer. there were many types of impairments in the classrooms such as hard of hearing and physical and visual impairments. some teachers indicated that there were learning problems arising from social problems and when children were severely neglected at home. there were also learners with dyslexia, dyscalculia and dysgraphia resulting in learning problems. about 10% of the learners suffered from visual, hearing and physical impairments; about 60% of the learners had some form of learning problem caused by dyslexia, dyscalculia or dysgraphia. in the opinion of the teachers, there was quite a big group of learners who had learning problems caused by child neglect and severe poverty. it was estimated after the classroom observations that about 30% of the learners were well-supported and that they were responsive. the rest of the learners were quite disruptive, and it seemed as if they did not know or understand what to do. the provincial department of education, the principals of the four schools and the teacher participants provided written permission to conduct the research. the authors kept the data and they were the only persons who had access to it. the institution to which the authors are attached provided an ethical clearance certificate. the conceptual framework underpinning this research comes from the interpretive practice, which allows researchers to understand social phenomena in the milieu in which they are constructed and repeated through activities (akerlind 2005:323). interpretivism departs from the view that insight into reality is obtained through social constructions, which include language, opinions, tools and documents (giorgi & giorgi 2003:71). this was used to help the researchers to understand the participants’ unique acceptance, teaching skills, training and organisational issues regarding fsss and inclusive education. interpretivism also guided the researchers to see the teachers’ unique situations and emotions from the perspective of the teachers as the human actors in the classroom ‘drama’ (chowdbury 2014:433). data analysis a narrative analysis was followed during which the participants’ opinions and experiences were transcribed. after this, data were arranged into core categories. themes arising from the field notes taken during classroom observation were also identified. this provided the opportunity to capture especially some participants’ feelings and emotions. all the data were then organised into themes and in some instances into subthemes. the researchers used triangulation to include data from more than one data collection method. ethical considerations ethical clearance to conduct this study was obtained from the university of south africa college of education research ethics committee (no. 2014/11/17/06926916/33/mc). results the main purpose of the research was to investigate the attitudes and opinions of teachers in fsss about the success and the challenges in the application of policies in these schools. the data presented nine main themes, and under one of the themes, support from the school and the school management, three subthemes emerged. the participants, whose direct quotations are used in this article, formed part of the research for a doctoral study (mobara 2018). all of them were professionally trained teachers. most of the participants had more than 10 years of teaching experience. there was one teacher with 33 years of teaching experience, one with 35 years and one with 40 years. theme 1: teachers’ negative attitudes to full-service schools it should be kept in mind that most of teachers at fsss did not choose to teach at fsss. many of them were already employed at schools when these schools were changed into fsss. these teachers and their principals simply had to accept the change based on new policies from the then department of education and had to welcome learners with minor barriers to learning and development in their schools. during the interviews, it became clear that there was a group of teachers who had accepted the fact that they had to deal with inclusive education in their schools and they supported the learners with barriers to learning in their classrooms. there were, however, some teachers who were participants in this research had their reservations about the implementation of education white paper 6 and about the introduction of fsss. most of the reservations relate to the school and the classroom situation, but there were also concerns about the involvement of parents. the negative attitude to inclusivity is apparent in the following statement of one of the participants: ‘i am not comfortable with inclusive education. no, it is just extra work’ (p2, female, teacher). a group of the participating teachers were indifferent to the problems of learners with barriers to the language of teaching and learning. one of the participants simply rolled his eyes and said that it was another story. when the issue of learners with reading problems was raised during the group discussions, one participant shouted: ‘these learners drive me crazy. i chase them out of the class if they cannot read’ (p8, female, teacher). it seemed as if some of the participants could not control their emotions as one of them said about a boy who could not read: ‘he either sits there, as i don’t want to see him, or he goes home. i could not be bothered. as long as he is out of my sight’ (p11, male, teacher). theme 2: acceptance of the ethos of inclusive education not all the points of view at the four selected schools were negative and the one researcher wrote in her field notes gathered during observation that there were many positive issues with regard to inclusive education at the four schools. three of the 20 teachers were of the opinion that a fss was a good idea. they felt that a fss allowed learners to stay in their communities and the learners did not have to go to a hostel. four teachers in different schools commented on how learners with special needs in the fsss had changed the mindset of some parents and community members. during group discussions, a few teachers pointed out that some of their community members showed more empathy towards learners with special needs. during observation there were specific incidents when learners with special needs were supported by the teachers. a learner who was hard of hearing was helped by a teacher to replace the battery of his hearing aid. the teacher of a learner who was struggling with reading went back to using a board game to emphasise single phonics. another teacher used concrete objects so that a learner with dyscalculia could grasp number concepts. there were two teachers who provided two of the learners in their classes with additional time to complete their sentences. a teacher read the questions that had to be completed to a learner who could not read. there were also a few incidents where the authors noticed that learners accepted and supported their classmates with special needs. during observation, for instance, one learner got up from his seat and went to another learner to assist him by turning his book so that he could write on the right side. outside the classrooms it was observed that there was another learner who was assisting a classmate with his wheelchair. theme 3: the influence of class size the recommended learner-to-teacher ratio in schools in south africa is 30:1. according to the school realities publication, emis, in 2022, the learner-to-teacher ratio on national level in south african schools where teachers are paid by the state was, however, 34:1 (careersportal 2022). as far back as 2012 research in the united kingdom showed that smaller class size had a positive effect on school success. in smaller classes, teachers had the opportunity to focus on individual learners (class size and education in england evidence report 2012:2). in some of the classes that were observed in the research under discussion, it was evident that there were too many learners in some of the classes and this made it impossible for the class teachers to attend to the specific and special needs of learners with barriers to learning and development. in one grade 1 class, there were, for instance, 50 learners; in a grade 2 class there were 45 learners and in a grade 3 class there were 52 learners. in the opinion of the researchers, this was detrimental to the enhancement of inclusive education in some classes. theme 4: support from the school and the school management to enhance the ethos of full-service schools certain issues arose that were related to support from the school and the school management. these issues will be discussed under the following headings: the principal, the school management team (smt) and the school-based support team (sbst). the principal all staff members should have the opportunity to attend further training and so develop themselves professionally. it is in the first place the duty of principals to see to it that all staff members get a chance to go for training because ‘[e]ffective principals also encourage continual professional learning’ (the school principal as leader: guiding schools to better teaching and learning 2013:11). principals should also keep record and track of the teachers’ needs for professional development (the school principal as leader: guiding schools to better teaching and learning 2013:15). this caused the teachers to become stressed. a participant said that the principal and the smt did not assist the teachers at all. one participant said: ‘our principal is not interested in anything regarding inclusive education. he said that i should go and teach my learners in class and stop troubling him with inclusive nonsense’ (p19, female, teacher). in the field notes it was written that the body language and gestures of the participant reflected her helplessness and that she could see that the teacher participant was becoming demotivated. during the focus groups, the emotional stress of the teacher participants also became clear and one participant made the following remark about her principal: ‘our principal is not interested in anything regarding inclusive education. he just says do what you have to do’ (p15, female, teacher). from a research project conducted in gauteng, one of the provinces of south africa, it becomes clear that principals are also in need of inclusive education training. one of the participating principals in this project said, for instance: ‘as principals we need training, we really need training on this really because we talk inclusion, inclusion means different things, different problems that needs to be addressed. how as a principal am i going to know how the teachers must support the child in class?’ (mahlo 2011:162) an effective principal is the ‘broker’ of conditions at his or her school. good principals are persons who can set an example showing that with a positive attitude things can be done in a school and thus in the case of full-service can lead to show the way how inclusive education can work. by creating a positive culture at school, children should be able to learn (leadership matters 2013). the school management team at three of the four schools, the participants indicated that they were not helped by the members of the smt to apply inclusive education and to support all learners in their classes. the curriculum that has to be completed was a serious issue for some participants. they did not know whether they should concentrate more on supporting learners with barriers to learning, which is time-consuming, or whether they should try to finish the curriculum, which could mean that some of the learners with barriers to learning would be left behind. a participant said: ‘we have to finish the curriculum and complete the number of activities prescribed by doe’ (p9, female, teacher). the participants explained that they did not get any assistance from members of the smts and that they had to handle the big task of teaching learners with barriers alone. one participant cried out: ‘nobody listens to us. we are voiceless. we have problems in our classes. we are struggling with learners who need additional support. we can’t help them’ (p18, female, teacher). the field notes captured the anxiety of this participant, which was very obvious. teachers at fsss should receive training to apply an inclusive education strategy called screening, identification, assessment and support (sias) (south african department of education 2008:1–2). the training could be helpful to apply inclusive education strategies in their classrooms, but at the schools that formed part of the research, it did not happen. at one school a participant remarked: ‘we don’t know what sias is. how can we use it, we were not trained on it?’ (p16, female, teacher). at another school a participant opined about the training in sias: ‘sias – no it was not training, it was only orientation, and it is too difficult to complete. there is too much paperwork’ (p11, female, teacher). at one school a participant took the issue further when she said that when colleagues from her school went for in-service training, no feedback about the training was provided to the rest of the staff. she wondered if the colleagues who went for training saw it merely as a trip and not as a chance to develop professionally. when one considers the serious issues mentioned by the participants relating to their principals and the members of the smts, it becomes evident that the practical implementation of the opening of fsss in south africa as set out in white paper 6 should ring alarm bells in the various departments of education. school-based support teams in some of the schools in this research, there were sbsts, but the participants complained that they were not functional. in some schools there were even files that were neatly covered, but it was all window-dressing. a participant reiterated the following: ‘all the files are smartly covered, but not any of the learners i referred to the sbst are ever helped’ (p8, female, teacher). no learners or teachers were supported by the sbsts. a group of the participants said that the members of the sbsts seem to lack the necessary knowledge and experience as they relied on individual teachers’ expertise and experience at their schools to provide them with assistance to help learners with barriers to learning. one participant frankly said: ‘we have a sbst at our school, but they can’t help our learners’ (p20, female, teacher). according to the participants, there were also cases where learners with barriers to learning were simply ignored by the sbsts. in research about fsss in the gauteng province of south africa, one of the participants stressed the fact that if a sbst is functional at a school, inclusion will work. in the responses of some participants, it became evident that there is a strong belief that if the sbsts are functional at schools, then inclusion will work. one respondent said: ‘if [a] sbst is functional then i[nclusive] e[ducation] will work, because the sbst it receives, or it gets all the conditions that needs to be addressed’ (mahlo 2011:163). this was confirmed by another respondent: ‘the sbst if functional, that is a step towards the implementation of i[nclusive] e[ducation] you can hear from what i have already said’ (mahlo 2011:163). as far back as 1994, bronfenbrenner and ceci (1994:572) said that people act according to their experience. in the research under discussion, it became clear that teaching at a fss was an experience that some of the participants did not enjoy. these participants became demotivated because they did not get the support that they needed from the smts at their schools. some of them felt that they want to stop teaching or wanted to go on long sick leave. one of the participants said the following about her health: ‘these children affect my health, my blood pressure’ (p14, female, teacher). it is clear that a policy that changes ordinary mainstream schools into fsss, thus placing learners with different abilities in the same classrooms, does not mean that inclusion is reached. it is necessary to change the whole school, the teachers and also the school community so that learners with different learning needs could be accommodated (mariga, mcconkey & myezwa 2014:20). theme 5: discipline in the schools in the south african constitution (1996), there are various rights that protect learners from corporal punishment. section 10 acknowledges, for instance, the right of all citizens to have their dignity protected. in section 12(1), the right to freedom and security is protected. it includes rights such as to be free from all forms of violence – not to be tortured or to be treated or punished in a cruel, degrading, or inhuman manner. in section 28(1), specific rights of a child are included. every child has the right to be protected against maltreatment, neglect, abuse or degradation. all forms of corporal punishment of children in south africa was effectively banned on 18 september 2018 by the constitutional court of south africa. in the judgement, the research that was performed was highlighted. that research showed that all corporal punishment has the potential to be damaging and could be part of a wider circle of violence. the research also showed that there are existing alternative nonviolent methods that could be used to raise a child to become a responsible member of society and that it was in the best interest of a child to stop defending moderate chastisement (south africa prohibits all corporal punishment of children 2019). some of the teachers who participated in the research complained about certain learners who disrupted their classes and the teaching that should take place. this is understandable because learners with learning problems caused by, for example, attention deficits are also admitted to fsss and often these learners are disruptive in class. some of the participants explained that they were at a loss about what to do with undisciplined learners and one said: ‘we as teachers feel threatened at times by the learners. they misbehave and no one knows what to do with them. we just leave them alone. they can do their work or leave it. we don’t assist them as their parents don’t want to help us discipline their children.’ (p15, female, teacher) it was clear that some participants did not know how to handle such disruptive behaviour as the only form of punishment that they knew was corporal punishment. the participants complained that although they were aware of the new policies about punishment and discipline, there were no practical guidelines on how to deal with discipline issues in their classrooms. theme 6: teaching methods during the visits to the fsss, it became clear that the members of staff were grateful for the additional resources that the schools received, which included ramps and assistance devices. quite often the additional resources were not used at all because the existing professional development programme does not make provision to really support teachers and other members of staff to implement inclusion in its true sense. according to some of the teachers at the fsss’ in a 2012 document of the northwest department of education it was admitted that the teachers at fsss had problems to adjust their teaching. in this document it is stated: ‘[i]t is the lack of reasonable adjustments to their teaching methods, the use of extra equipment and teaching aids and the improvement of learner performance that they experience as a problem.’ (northwest department of education 2012:4–5) regarding teaching methods, voltz, brazil and ford (2001:28) opine that a single method is never suitable when there are learners with diverse abilities and learning needs in one classroom. teachers should use a variety of methods and teaching materials to cater for the diversity in a classroom. in his research at an fss, ntsoaki (2017:42) affirms this view reporting that a participant said that a teacher had to try quite a number of teaching methods when there are learners with diverse abilities and learning needs in his or her class. a teacher in a fss cannot use one teaching method only. theme 7: language issues regarding language teaching, wildsmith-cromarty and balfour (2019:296) say that often learner success depends on the ability of teachers to develop learners’ languages for literacy and for language of learning and teaching (lolt) purposes. the authors opine that research has shown that if literacy is developed in young learners’ home languages, it will have a positive effect on the literacy development in the lolt, should it differ from the home languages. owen-smith (2010:31) goes a step further when she states that learners are disadvantaged if they cannot use the language that they are most familiar with, which is usually the home language, at school. it is unsure if these learners will be able to perform to the best of their ability at school. this could weaken the learners’ self-confidence and may result in underachievement. by law no learner in south africa may be refused to be admitted to a public school because of unfair discrimination or unequal treatment based on race, language or religion (south african department of education 2006:5). in his research at an fss, ntsoaki (2017:44) reports that the lolt of some learners was a problem. the lolt of the school was english, but learners who did not speak english were admitted. this meant that quite often and when necessary, the teachers had to code switch. one participant said that at the school ‘language is a serious barrier’ (ntsoaki 2017:44). the teachers who were the participants in this research had learners who did not understand or speak the lolt of the school. in spite of this, the participants were expected to teach these learners and to complete the curriculum. for some of the participants this was a nightmare. one participant who was using setswana (one of the official languages of south africa) said regarding a learner who did not speak setswana about the management of the school and the curriculum specialist: ‘they will not ask or understand that the learner does not understand setswana. i will be in big big [italised for emphasis] trouble’ (p2, female, teacher). theme 8: attitude to different religions during the research an issue concerning learners’ religious practices arose. it is a general practice in south african schools that children with a muslim background usually attend schools where muslim is the dominant religion. attending mosque early on a friday afternoon is thus not a problem. in the fsss included in the research, there were a few muslim learners and they had to leave early on a friday. this meant that these learners missed some classes every friday afternoon and the teachers had to make provision for the learners to catch up with the class work done while they were absent. this gave rise to another need of learners that the participants had to attend to. some of the participants were frank when providing their opinions about learners who came from denominations other than their own. one participant said: ‘don’t know why a person must struggle with these different types of learners! now i must struggle with this child having to carry their religious beliefs. do i look like a pastor?’ (p3, female, teacher). in the field notes the agitation of another participant about the issue of religion was noticed because she asserted during the group interview: ‘why does this boy need to attend mosque on a friday? he is leaving school every friday. it becomes my problem as he’s always behind with his work. i have to assist him to catch up with his work. i refuse; i do not want to do it.’ (p3, female, teacher) the two participants were rather upset and troubled when one considers their answers. it was evident that they were not prepared during in-service training or by the management of the schools about cultural changes that might occur with the introduction of inclusive education and fsss. it was also clear that some of the participants were prejudiced. prejudice should not be allowed in schools under the auspices of the government let alone fsss. regarding this, hodgson (2017) states: ‘although the state should promote all religions, it is required to do so without any favour for or prejudice against any particular religions or beliefs. it is particularly important for minority religions and cultures …’ (p. 188) it is also not in line with what is expected of teachers according to the south african council for educators (sace) because teachers have to ‘acknowledge the uniqueness, individuality and specific needs of each learner, guiding and encouraging each to realise his or her potentialities’ (sace 2008:12–13). the remarks of the participants were, however, also a reflection of their frustration as it was evident that they were not sufficiently prepared to attend to the diverse needs of the learners in their classrooms. theme 9: parent involvement research elsewhere and in south africa often reveals how important parental involvement is for young learners’ success at school and for their well-being. involvement of parents enhances learners’ self-esteem, it provides the opportunity for parents to get to know the teachers, which could be useful to facilitate their children’s progress, and it also helps to develop a positive attitude to school (yu & shandu 2017:160). ntsoaki (2017) reports that in his interviews with teachers at an fss, the participants informed him that the parents were not supportive and involved in their children’s teaching and learning at the school: ‘we are sitting on a serious problem here as many parents do not give their children support at home. when we give learners homework, most of them come back to school without doing it.’ (ntsoaki, 2017:42) it seems as if a lack of parental involvement is a recurring theme in research about schools and also fsss in south africa and it also surfaced in the research discussed in this article. when parents are requested to come to school, the participants complained that they did not come. one participant explained: ‘when we have learners with behaviour problems, and write letters, we call their parents by telephone, and we send messages. we need to see them. they don’t respond, they are nowhere to be found, there is no response from parents.’ (p7, female, teacher) this was affirmed by another participant: ‘parents are not interested in the code of conduct of the school. they expect the school to take full responsibility of their child, and they as parents don’t even want to help with the discipline.’ (p13, female, teacher) there were also complaints about parents who become aggressive as one participant explained: ‘i was slapped in my face by a mother. i sent the learner home to go and call her mother as she said she was at home. i was teaching reading on the mat with a group of learners, when the classroom door opened and next thing [participant sobbed again], i felt pain on my face. now i just leave learners if their parents don’t care, why must i worry?’ in the fsss that formed part of this study, many parents also did not respond when the teachers requested them to give their consent that the school could apply for additional support for learners with behavioural problems or other barriers to learning. the parents simply did not come to the schools. this also meant that the teachers could not get the parents’ consent to apply for additional support for their children. discussion when one considers the feedback from the participants in the research, it is evident that they experienced many problems teaching at fss. the difficulties that the participants mentioned during the research can be considered on two levels of human functioning: the knowledge or cognitive level and the emotional level. on the cognitive level, we as the researchers realised that most of the participants lacked knowledge on how to adjust their teaching methods according to the learning needs of their learners and they also did not know how to use the extra equipment and aids provided to the fsss by the provincial department of education. some participants mentioned that although they know the sias document, they were not trained on how to use and apply it in their schools. there was a complaint that only some staff members went for in-service training but no feedback about the training was given to the other staff members afterwards. we opine that the use and classroom application of the sias document could help teachers and school management to apply the ethos of inclusive education in fsss. this could only be realised if all staff members in the fsss receive in-service training and specific training to apply the sias document in the classroom. the opportunity to teach all learners according to their specific learning needs was thus not realised in these fsss. it was evident to us that the participants knew the new law about corporal punishment in schools but nobody helped them with strategies to maintain discipline. some of the participants realised that parental involvement is an important contributing factor for children’s success at school. they did, however, not know how to get the parents involved in the school and in the schoolwork of their children and they were not supported by the smt to get parents involved. the issue that principals should receive training regarding inclusive education was also evident. a group of the participating teachers mentioned that the members of their sbsts lacked the necessary knowledge to help them with teaching and disciplinary issues in their classrooms. some participants opined that they did not know whether they should try to teach the full curriculum to the learners in their classes or if they should ‘waste’ time trying to support all the learners according to their learning needs. it seems as if class size in fsss should be an issue that needs the urgent attention of the national department of education. on the emotional level, rather disturbing issues arose during the research process. this is when, especially in the field notes, the unspoken voice of the participants was captured. interpretivism helped the researchers to better understand the teachers as the human actors in the classrooms of fsss. we opine that a lack of support from the smt was the predominant cause that some participants became demotivated. emotional stress was evident among a group of participants, and this was what we attributed it especially to the attitude of the principal and smt. we observed that some participants appeared to be anxious because they felt that nobody was listening to them and that they were actually voiceless. agitation and frustration were also deduced from some of the responses. the researchers interpreted the comments about learners who have to attend mosque on a friday and thus be taught additionally as prejudice, which is something that has to be avoided in any education system. we are of the opinion that the emotional issues that became evident during the research process could have a negative impact on the health and well-being of the participants who teach in fsss. any change in the education system including inclusive education should not merely be a wonderful theoretical plan; it should also address the practical application and implications of such change. first and foremost, it is the duty of the principal and the smt in fsss to make sure that teachers are prepared for inclusive education in their classrooms. teachers should be trained to apply different methods if the needs of their learners necessitate it. they will have to be well informed about changes including cultural changes in their classrooms and in their teaching. teachers who have to carry the responsibility to practically apply the spirit of inclusive education in the schools and in their classrooms should be consulted when the policies are planned, and they should also be constantly supported to apply the policies. the well-being and the health of teachers in fsss who have to carry the responsibility to have learners with identified barriers to learning in their classrooms should be attended to. it is rather sad that teachers at fsss should have such negative views about teaching learners with barriers to learning and that they should have reservations about the viability of applying the ethos of inclusive education in their classrooms. a group of the fss teachers who were the participants in this research voiced their predominantly negative opinions about teaching in fsss. this could be reason for their reservations about the success of putting education white paper 6 into practice. although the research was conducted in one province, it is apparent that some of the participants view teaching at an fss as a nightmare because they did not receive the necessary training and support to teach learners with diverse learning needs. it is evident that the teachers who have to put the changes into practice in fss classrooms should be considered and therefore the ‘voice’ of teachers should play a vital role in any education system and especially in inclusive education. it was encouraging to hear a positive ‘voice’ about inclusive education expressed by a few of teacher participants. this could be used to grow a positive attitude towards inclusive education among the parents and community members. learners who help their classmates could be acknowledged in some or other way. conclusion we conclude that the specific needs of teachers whose schools were transformed into fsss are the result of challenges in the education system. the teaching needs of teachers in fsss and their emotional well-being will have to be addressed. however, teachers in these schools should also remember to adhere to the requirements of human rights in all situations and do so consistently. the positive attitude about inclusive education expressed by some teachers could be channelled to change their colleagues’ attitude regarding learners with special needs. in the end, the teachers are the ones who have to apply inclusive education in their classrooms and therefore it is crucial that their ‘voice’ should be heard so that fsss in south africa can be successful. acknowledgements this article is a partially based on the authors phd thesis entitled professional development in full-service schools in dr ruth s mopati district in northwest province. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions a.j.h. wrote the main part of the article and also helped with the editing. n.m. did the research and wrote the rest of the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability the data that support the 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2013, the wallace foundation, new york, ny, viewed 30 august 2021, from https://www.wallacefoundation.org. voltz, d.l., brazil, n. & ford, a., 2001, ‘what matters most in inclusive education a practical guide for moving forward’, intervention in school and clinic 37(1), 23–30. https://doi.org/10.1177/105345120103700105 wildsmith-cromarty, r. & balfour, r.j., 2019, ‘language learning and teaching in south african primary schools’, language teaching 52(3), 296–317. https://doi.org/10.1017/s0261444819000181 yu, k. & shandu, e., 2017, ‘overcoming language barriers: lessons learnt from migrant children’, perspectives in education 35(1), 157–170. https://doi.org/10.18820/2519593x/pie.v35i1.12 abstract introduction methodology results discussion conclusion acknowledgements references about the author(s) stephanie c. pillay department of speech therapy and audiology, chris hani baragwanath academic hospital, johannesburg, south africa roxann redant department of occupational therapy, chris hani baragwanath academic hospital, johannesburg, south africa nadia umuneza department of physiotherapy, chris hani baragwanath academic hospital, johannesburg, south africa azra hoosen department of speech therapy and audiology, chris hani baragwanath academic hospital, johannesburg, south africa fiona breytenbach department of occupational therapy, university of the witwatersrand, johannesburg, south africa sameera haffejee department of physiotherapy, chris hani baragwanath academic hospital, johannesburg, south africa zvifadzo matsena-zingoni division of epidemiology and biostatistics, university of the witwatersrand, johannesburg, south africa kganetso sekome department of physiotherapy, university of the witwatersrand, johannesburg, south africa citation pillay, s.c., redant, r., umuneza, n., hoosen, a., breytenbach, f., haffejee, s. et al. 2022, ‘factors affecting length of hospital stay in stroke survivors in south africa: a call for a stroke unit’, african journal of disability 11(0), a1065. https://doi.org/10.4102/ajod.v11i0.1065 original research factors affecting length of hospital stay in stroke survivors in south africa: a call for a stroke unit stephanie c. pillay, roxann redant, nadia umuneza, azra hoosen, fiona breytenbach, sameera haffejee, zvifadzo matsena-zingoni, kganetso sekome received: 02 may 2022; accepted: 04 sept. 2022; published: 12 dec. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: stroke in africa is a growing and neglected crisis with the incidence more than doubling in lowto middle-income countries in the last four decades. despite this growing threat, implementation of stroke models of care in hospitals is lacking. stroke units as a model of care have been shown to decrease mortality, reduce length of hospital stay (los) and improve outcomes in stroke survivors. objectives: to determine the profile of stroke survivors and identify factors contributing to los at chris hani baragwanath academic hospital (chbah) in south africa to support stroke unit implementation. method: this study involved a retrospective record review of stroke survivors admitted to chbah between september 2018 and may 2019. factors associated with los were determined using linear regression models; univariate and multiple regression models were fitted. results: a total of 567 participants’ data were included. overall, 51.85% of the participants required services from all rehabilitation disciplines. the median los was 9 days (interquartile ranges [iqr]: 5–11 days) with each discipline providing an average of six sessions. participants who were referred to the rehabilitation team 3 days after admission to hospital stayed 6 days longer compared with those participants who were referred earlier (p < 0.001). conclusion: delayed referral to the rehabilitation team resulted in increased los. this study supports the need for dedicated stroke units to decrease hospital los and improve patients’ outcomes by ensuring early, well-coordinated rehabilitation intervention and discharge planning. contribution: the study highlights the urgency for re-evaluation of stroke care infrastructure within gauteng to streamline and provide accessible stroke models of care. keywords: stroke; rehabilitation; length of stay; stroke unit; south africa. introduction stroke in africa is a growing burden and neglected crisis (owolabi et al. 2015). the majority of the global stroke burden is in lowto middle-income countries with stroke incidence more than doubling in these countries in the last four decades (johnson et al. 2016). in south africa, strokes are estimated to be responsible for 25 000 deaths annually and 95 000 years lived with disability (maredza, bertram & tollman 2015). the poor health of the south african population is often attributed to the quadruple disease burden the country faces (pillay-van wyk et al. 2016). the increase in various comorbidities and non-communicable diseases as a risk factor for stroke has further contributed towards an increased prevalence of strokes (mudzi, stewart & musenge 2012; owolabi et al. 2015). currently in south africa’s public healthcare system, most stroke survivors are managed as part of a general medical service without dedicated beds assigned to stroke care (bryer et al. 2010). despite the growing threat to the healthcare system, implementation of stroke models of care within hospitals is lacking (bryer et al. 2010; gouda et al. 2019; south african contextualised stroke rehabilitation guideline [sacsrg] 2019). the implementation of stroke units is widely recognised as the most effective solution to managing the burden of acute strokes (bryer et al. 2010; gittins et al. 2020; grimmer et al. 2019; sacsrg 2019). literature defines a stroke unit as an environment in which specialised and multidisciplinary stroke teams deliver stroke care in a dedicated ward or unit (canadian stroke strategy 2009; pierot et al. 2018). treatment in a stroke unit has been found to decrease mortality, reduce length of hospital stay (los) and improve patient outcomes because intervention is early and well coordinated (bryer et al. 2010; sacsrg 2019; viljoen 2016; zhu et al. 2009). moreover, stroke unit implementation does not come at a high cost to resource-constrained facilities. no additional staffing is required, and it can be easily established by allocating a ward dedicated to the acute care of stroke survivors (adeloye 2014). with an existing trained multidisciplinary team and established medical wards, the stroke unit model of care is a potentially feasible model to be implemented in public hospitals in south africa. considering the enormous economic burden that strokes place on healthcare systems, stroke rehabilitation services need to become a strategic priority for the public health sector (bryer et al. 2010; owolabi et al. 2015). there is limited data on the stroke unit model of care in south africa and the specific understanding of stroke patterns, determinants and outcomes (grimmer et al. 2019; owolabi et al. 2015). this study will therefore help provide more contextually relevant data to south africa. this research aimed to explore the need for a stroke unit based on the profile of acute stroke survivors referred for rehabilitation at the largest central hospital in south africa. the primary objectives of this study were to understand the profile of the acute stroke population, determine the factors affecting los and outline the current pathway of stroke survivors. methodology study design a retrospective record review was conducted using patient records retrieved for stroke survivors admitted as inpatients at chris hani baragwanath academic hospital (chbah) who received speech therapy (st), occupational therapy (ot) and physiotherapy (pt) services between september 2018 and may 2019. study participants the rehabilitation team retrieved records of 593 patients referred for rehabilitation within the study period. the exclusion criteria included: patients admitted for medical reasons other than acute strokes, patients who were admitted and discharged prior to referral to the rehabilitation team, records of patients who had demised prior to referral to the rehabilitation team and patients below the age of 18 years old. the study focused on analysis of the 567 patient records that met the inclusion criteria. figure 1 demonstrates the inclusion and exclusion criteria. figure 1: flow diagram of included and excluded patient records. study setting data were retrieved from a public healthcare institution, chbah, in south africa. chbah is the third largest hospital in the world, accommodating approximately 3400 beds. data extraction and instrument the rehabilitation team extracted data from participants’ medical records using a manual data collection tool. the variables collected included gender, age, date of admission, comorbidities, type of stroke, area of lesion, date of referral to rehabilitation team, date of initial contact and the patient’s management outcome. the los was measured from the date of admission to the date of discharge from hospital or rehabilitation services as well as death. the data were transferred to an electronic excel sheet and verified against original hospital records, electronic hospital records, the picture archiving and communication system and the national health laboratory service electronic database. data analysis the management, cleaning, coding and analysis of data were performed using stata version 16.1. continuous variables such as age were summarised using mean and standard deviation (sd) as they were normally distributed. skewed variables such as the los were summarised using medians and interquartile ranges (iqr). all categorical variables (gender, stroke type, stroke site, etc.) were compiled using frequencies and proportions. the factors associated with los were determined using the linear regression model, and both univariate and multiple regression models were fitted. significance was based on 5% across all analyses. ethical considerations the data used in this study were anonymised using unique identifiers per participant. permission to use the participants’ hospital records was granted by the chief executive officer and heads of departments at chbah. this study obtained ethical clearance from the human research ethics committee of the university of the witwatersrand (ethical clearance number: no. m190744). results a total of 567 participants were included in the study. table 1 describes the demographic characteristics of the participants. the participants’ ages ranged from 18 to 99 years old, with a mean age of 61 (sd 15.8) years old. majority of the participants (44.8%) fell in the 59–78 years age group. females accounted for 55% of the participants and 78% of the participants had an ischaemic stroke. there were 82.4% participants with an underlying condition. among all participants, 69.8% were hypertensive 20.1% had diabetes mellitus, 18.9% were hiv positive and 5.3% had tuberculosis (tb) infection. however, many participants were not tested for hiv or tb, with the status being unknown for 49% and 70.4% of participants, respectively. table 1: demographic profile of stroke survivors admitted to chris hani baragwanath academic hospital between september 2018 and may 2019 (n = 567). the los of participants in the study ranged between 0 and 76 days. the median number of days spent at chbah was 9 days with an iqr of 6–14 days. the median los of the participants referred to and seen by the rehabilitation team within 3 days of admission was 8 days (iqr: 5–11 days), while the median los of the participants referred and seen by the rehabilitation team after 3 days of admission was 13 days (iqr: 8–20 days). the median los time difference between those seen within 3 days and those seen after 3 days was significant (p < 0.0001) as shown by the box and whisker plot in figure 2. figure 2: box and whisker plots for various length of hospital stay intervals evaluated for the stroke survivors. the los was stratified by different baseline characteristics to identify any sub-population variations (table 2). there was a significant median difference in the los between age groups (p = 0.0021), hiv status categories (p = 0.0259), tb status categories (p = 0.0124) and hypertension status groups (p = 0.0056). there was a negative correlation between age at admission in years and los in days of 15.7%, which was fairly weak; however, the linear relationship was statistically significant (p = 0.0002). table 2: to determine the factors contributing to length of hospital stay of participants using univariate and multiple linear regression. to determine the factors associated with los, linear regression was performed. there was a dose–response relationship between age groups and los. the older the participant the less likely they were to stay longer in the hospital. a one-year increase in participants’ age decreased the los by 0.1 days. male participants had an increased los of 2 days compared with females (p = 0.036). participants with hiv infection stayed 3 more days in the hospital compared with hiv negative participants (p = 0.009). study participants with tb infection stayed 4 more days in the hospital compared with tb negative participants (p = 0.021). study participants with hypertension stayed 3 fewer days compared with those who were not hypertensive and those with diabetes mellitus stayed 3 fewer days compared with those without diabetes mellitus. the stroke survivors who required rehabilitation from all three professions stayed 4 more days compared with those who required rehabilitation from one profession (p < 0.003). in the adjusted linear regression, gender and having tb infection were no longer significantly associated with los. however, factors such as hypertension, diabetes mellitus and referral to the rehabilitation team still remained statistically significant. majority of the participants were first referred to ot followed by pt and lastly st. cross tabulations of the referral and contact patterns by profession showed an 84.1% agreement that the participants who were first referred to a specific profession had their first contact with that particular profession. of all the participants reviewed, 51.9% required rehabilitation services from all rehabilitation team members. out of the total number of participants, 89.4% required pt, 82.7% required ot and 67.2% required st. the data further indicate that the rehabilitation team was able to attend to 53.4% of referrals within 24 h. each discipline had an average of six sessions with a stroke survivor prior to hospital discharge. majority of the participants were referred and seen by the rehabilitation team within 3 days of admission (n = 391, 71.7%) while 28.26% (n = 154) were referred and seen by the rehabilitation team after 3 days. table 3 further outlines the outcome of participants after inpatient care for each discipline. most of the participants (60.7%) were referred to a local clinic or other hospital to continue stroke rehabilitation. the second most common outcome was death with 19.8% of the participants passing away while in hospital. on average, 7.2% of participants were discharged by the rehabilitation team; this occurs when a patient has improved and no longer requires therapy or if the patient’s medical condition has deteriorated or plateaued. among the 111 participants who died, most of them were males (54%), had an ischaemic type of stroke (75.6%) and 58.5% were in contact with all the three rehabilitation professions and received care within 3 days from admission. they had a median los of 7 days (iqr: 6–10 days). the data indicates that only 2.1% of all participants in the study were transferred to a specialised rehabilitation hospital to continue intensive stroke rehabilitation. table 3: determining the care pathway and participant outcomes. discussion the successful management of a stroke begins with the recognition of stroke as an emergency (bryer et al. 2010). as a central level hospital with a high admission of strokes, the management of stroke survivors should be a strategic priority in improving patient outcomes, reducing the cost to healthcare and the burden of strokes on hospital beds. literature indicates that stroke care can be improved by implementing evidence-based stroke care pathways (andrew et al. 2019; langhorne, pollock & stroke unit trialists’ collaboration 2002). solutions to managing the high incidence of strokes in lowand middle-income countries need to be generated (johnson et al. 2016). one solution to managing the high burden of strokes includes the implementation of a stroke unit (sacsrg 2019). the discussion aims to review the demographic profile of the participants, the factors that impacted their los and the care pathway they followed through the hospital setting in order to demonstrate how a stroke unit can improve their overall care while reducing hospital costs and los. the 75.2% occurrence of ischaemic stroke in this study is in line with existing stroke literature that indicates that ischaemic strokes are more common (boehme, esenwa & elkind 2017; campbell et al. 2019; girijala, sohrabji & bush 2017). the data demonstrated a higher prevalence of strokes in females. this is similar to findings of an existing south african study that highlighted a higher prevalence of strokes among females (ferris & naicker 2020). despite age-specific stroke rates being higher in males, females are more at risk of having more stroke events that they are less likely to recover from because of their longer life expectancy (girijala et al. 2017; jacobs & ellis 2021; reeves et al. 2008). these current findings are also comparable to a study conducted at chbah, which found ischaemic strokes more prevalent in women than men (mudzi et al. 2012). strokes in africa occur at a younger age and are more deadly (johnson et al. 2016). the average age of the study participants was identical to a previous study in a similar context, which found the average age of stroke survivors to be 59.8 years (ferris & naicker 2020). the age profile of stroke survivors is important because strokes in younger people may result in a greater loss of self-worth and socioeconomic productivity (akinyemi et al. 2021). in this study, age was found to be statistically significant to the los and demonstrated a negative correlation pattern (i.e. the older the stroke survivor the shorter the los). the findings contrast a number of studies that found the older the stroke survivor the longer the los (peltola & euro 2012; saxena & prasad 2016). available literature on this correlation was largely based on developed nations and reasons for the deviation in this study is likely multifactorial and requires further investigation. sixty nine percent of study participants presented with hypertension while a low percentage presented with diabetes. these findings could be explained by the fact that elderly people are more at risk of hypertension, which results in approximately 50% of ischaemic strokes and significantly increases the risk of haemorrhagic stroke, while diabetes is an independent risk factor to stroke (banerjee & paik 2012; world health federation 2017). although the occurrence of hiv and stroke may purely be coincidental, hiv could be an effect modifier to stroke as a result of the associated vasculopathies and cerebrovascular changes (benjamin et al. 2012). according to statistics south africa 2018 general household survey, an estimated 13.1% of south africa’s population is hiv positive. unknown hiv data among stroke survivors has been a recurring issue as reported by a previous study conducted by stone et al. (2020), which found an unknown hiv status in 45% of their study participants. this study could not determine the association between hiv status and los because of 49.2% of the participants presenting with an unknown hiv status. the demographic profile and burden of disease profile of the participants will impact the criteria for admission to a stroke unit as well as influence the type of education and counselling conducted on preventing secondary strokes. understanding the patient profile largely assists in identifying areas for implementation of prevention programmes. the median los for participants in this study was 9 days. in countries such as ghana and mozambique, the average was 6 days (agyemang et al. 2012; mweshi et al. 2016). in contrast, a study conducted at a nigerian tertiary hospital showed the average los was 13.7 days, when compared with developed countries, the estimated los of this study was less than most european countries who report an average of 12.1 days (somotun et al. 2017). hospital admission of each patient is costly, and an increase in los increases the cost to the hospital. according to a study by viljoen (2016), the los of participants was directly related to the cost to the hospital. the chbah accounts department estimated that the financial expenditure for each patient admitted between september 2018 and may 2019 ranged between r3400.40 and r4925.40 per day. using the data from this study, it was determined that the average cost per admission because of stroke, based on the median (9 days), was between r30603.60 and r44328.60. a delay in rehabilitation services increased the los to a median of 13 days, thus increasing the cost per patient admission to r44205.20 – r64030.20. study participants that were referred for rehabilitation within 3 days resulted in a decreased median los (8 days) reducing the cost per patient admission to between r27203.20 and r39403.20. the timely referral to the rehabilitation team decreased the los of participants resulting in a reduction in cost to the hospital. according to the sacsrg (2019), the time from admission to referral for rehabilitation should be between 24 h and 48 h. on average, it took 2 days before participants were referred to the rehabilitation team and 3 days from admission to a first contact with the rehabilitation team. this delay prevents stroke survivors from receiving rehabilitation services early and can lead to secondary complications (viljoen 2016). the time from admission to initial contact is in line with a study by chimatiro and rhoda (2019), which found that on average, in lowto middle-income countries, it took 3 days from admission to referral to pt. the average los of participants in this study was 3 days longer than what was found in a previous stroke study at the same facility (mudzi et al. 2012). early rehabilitation intervention has been strongly recommended by the sacsrg (2019), which states that a stroke survivor should be screened for swallowing disorders and mobilised once they are medically stable to decrease the chances of developing deep vein thrombosis, pneumonia, pulmonary emboli and pressure sores as these can increase the los and result in poorer functional outcomes or in-hospital death. for such recommendations to be fulfilled, stroke survivors would need to be seen from the first day of admission (sacsrg 2019; saxena & prasad 2016). the establishment of a stroke unit would allow stroke survivors to be screened by the rehabilitation team earlier and admitted directly into the unit, reducing the time from admission to referral and initial contact. this improves initiation of early rehabilitation, ongoing discharge planning and allows for effective implementation of stroke care recommendations and multidisciplinary protocols (sacsrg 2019; canadian stroke strategy 2009; viljoen 2016; zhu et al. 2009). in this study, 51.9% of participants required services from all three rehabilitation team departments; therefore, the need for a multidisciplinary approach and dedicated unit to optimise stroke care is reinforced. according to the results, 70% of participants are then referred to continue therapy, either at chbah down referral sites or specialised rehabilitation units. stroke survivors at chbah are managed within the general hospital system (bryer et al. 2010), the involvement of multiple health professionals across many areas results in breakdowns in communication, accountability and teamwork, hindering the success of stroke care provided (adeloye 2014). as seen from this study, 19.8% of participants passed away in hospital. research indicates that the implementation of dedicated stroke units reduces the odds of death in this population (langhorne, ramachandra & stroke unit trialists’ collaboration 2020). given the significant percentage of participants that passed away, it would support the implementation of a dedicated unit to assist in potentially reducing mortality during the course of inpatient admission. an evidence-based and coordinated stroke care pathway through the use of a stroke unit can further reduce the burden of disability and death related to strokes (platz 2019). the majority of participants (67.9%) were discharged to resume rehabilitation on an outpatient basis, while only 2.1% were transferred to a specialised rehabilitation hospital. this finding was highlighted in a different study that found over 50% of participants with cerebrovascular disease in south africa were discharged to resume rehabilitation as an outpatient (stone et al. 2020). currently within the region of the research study, participants may be referred to a 15-bed specialised rehabilitation hospital that accommodates patients on a 6–12 week cycle. this would explain why only 2.1% of participants could be referred to a rehabilitation unit as the current infrastructure appear disproportionate to the rehabilitation needs of stroke survivors in the region. this finding highlights the urgency for re-evaluation and establishment of improved infrastructure in an attempt to streamline and provide accessible stroke services in public health. study limitations the main limitation was missing data as a result of the involvement of multiple field researchers and inconsistent data capturing. data capturing was affected by lack of training of field researchers as well as the ability to interpret medical records. missing data were also attributed to insufficient hospital records and unavailable medical investigations. the data capturing was further impacted by delayed confirmation of diagnosis, mixed terminology or unfamiliar abbreviations. there was a significant time limitation for researchers to collect and analyse data because of their daily schedule and clinical tasks. conclusion the demographic characteristics of the study population was in line with existing literature on stroke populations. there was a higher incidence of strokes in females and participants between the ages of 56 and 76 years, with hypertension being the most common comorbidity. the median los of a stroke survivor at chbah was 9 days. it was found that a delayed referral to the rehabilitation team resulted in an increased los of approximately 5 days and increased the cost per admission from r17002.00 to r24627.00. the care pathway of stroke survivors at chbah is not aligned with literature on specialised stroke care in the acute care setting. this results in insufficient time for treatment, impacted patient outcomes and a fragmented team approach. a dedicated stroke unit or ward could assist in the reduction of time from admission to initial contact with the rehabilitation team, which results in improved patient outcomes and a reduction in los (bryer et al. 2010; sacsrg 2019; viljoen 2016; zhu et al. 2009). reduced los of stroke survivors would reduce financial expenditure for public healthcare institutions. the implementation of a stroke unit could lead to a more cohesive management approach by reducing challenges related to discharge planning, communication breakdowns and infrastructure challenges in accordance with various stroke models of care and guidelines published (bryer et al. 2010; sacsrg 2019; viljoen 2016; zhu et al. 2009). implications this study proposes to contribute to the current body of stroke population demographics and rehabilitation needs within the johannesburg region. it aims to contribute towards motivating for effective care pathways of stroke survivors while improving patient outcomes and reducing the cost and burden on the healthcare system. the study also suggests the need for further research related to improving stroke care infrastructure across levels of service delivery. acknowledgements we would like to acknowledge all field researchers from the speech therapy, occupational therapy and physiotherapy departments at chbah for assisting with data retrieval and collation. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions all authors conceptualised the idea for this publication, wrote and provided input on the first manuscript draft and made the editorial input thereafter. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views expressed in this article are of the authors alone and not of the affiliated institutions. references adeloye, d., 2014, ‘an estimate of the incidence and prevalence of stroke in africa: a systematic review and meta-analysis’, plos one 9(6), e0100724. https://doi.org/10.1371/journal.pone.0100724 agyemang, c., attah-adjepong, g., owusu-dabo, e., de-graft aikins, a., addo, j., edusei, a. et al., 2012, ‘stroke in 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stroke and hypertension, viewed 29 may 2020, from https://world-heart-federation.org/cvd-roadmaps/whf-global-roadmaps/hypertension/. zhu, h.f., newcommon, n.n., cooper, m.e., green, t.l., seal, b., klein, g. et al., 2009, ‘impact of a stroke unit on length of hospital stay and in-hospital case fatality’, stroke 40(1), 18–23. https://doi.org/10.1161/strokeaha.108.527606 abstract introduction the study findings sampled countries’ funding trends impact of disability policies on increasing the numbers of students with disabilities in higher education impact of sampled countries’ funding mechanisms discussion conclusion acknowledgements references footnotes about the author(s) desire chiwandire department of political and international studies, rhodes university, south africa louise vincent department of political and international studies, rhodes university, south africa citation chiwandire, d. & vincent, l., 2019, ‘funding and inclusion in higher education institutions for students with disabilities’, african journal of disability 8(0), a336. https://doi.org/10.4102/ajod.v8i0.336 original research funding and inclusion in higher education institutions for students with disabilities desire chiwandire, louise vincent received: 27 oct. 2016; accepted: 29 aug. 2018; published: 29 jan. 2019 copyright: © 2019. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: historically, challenges faced by students with disabilities (swds) in accessing higher education institutions (heis) were attributed to limited public funding. the introduction of progressive funding models such as disability scholarships served to widen access to, and participation in, higher education for swds. however, recent years have seen these advances threatened by funding cuts and privatisation in higher education. objectives: in this article, the funding mechanisms of selected developed and developing democratic countries including the united kingdom, the united states, canada, australia, south africa and india are described in order to gain an insight into how such mechanisms enhance access, equal participation, retention, success and equality of outcome for swds. the countries selected are often spoken about as exemplars of best practices in relation to widening access and opportunities for swds through government mandated funding mechanisms. method: a critical literature review of the sample countries’ funding mechanisms governing swds in higher education and other relevant government documents; secondary academic literature on disability funding; online sources including university world news, university affairs, newspaper articles, newsletters, literature from bodies such as the organisation for economic co-operation and development, disabled world and parliamentary monitoring group. data were analysed using a theoretically derived directed qualitative content analysis. results: barriers which place swds at a substantial educational disadvantage compared to their non-disabled peers include bureaucratisation of application processes, cuts in disability funding, means-test requirements, minimal scholarships for supporting part-time and distance learning for swds and inadequate financial support to meet the day-to-day costs that arise as a result of disability. conclusion: although the steady increase of swds accessing heis of the sampled countries have been attributed to supportive disability funding policies, notable is the fact that these students are still confronted by insurmountable disability funding-oriented barriers. thus, we recommend the need for these heis to address these challenges as a matter of urgency if they are to respect the rights of swds as well as provide them with an enabling environment to succeed academically. introduction in the 1980s and 1990s, segregation of students with disabilities (swds) from mainstream education was called into question by the inclusive schools movement (simons & masschelein 2005:217). these developments culminated in the 10 june 1994 salamanca world conference on special needs education, which was attended by 300 participants from 92 countries and 25 international organisations. the gathering led to the signing of the salamanca statement on inclusive education, which stated that: regular schools with this inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities, building an inclusive society and achieving education for all. (united nations educational, scientific and cultural organisation [unesco] 1994:ix) following the salamanca statement, inclusive education has been widely accepted as a model for education (maher 2009). proponents see inclusive education as foundational to a more just society (ainscow et al. 2004), because it obliges mainstream educational institutions to focus on increasing the participation and levels of attainment of swds as a historically marginalised group (wolanin & steele 2004:vii). the salamanca conference highlighted the need to prioritise funding as a mechanism for fostering the inclusion of swds in higher education and encouraged the international community to: give the highest policy and budgetary priority to improve their educational systems to enable them to include all children regardless of individuals’ differences and difficulties. (unesco 1994:ix) recent literature on funding mechanisms aimed at providing access to higher education for previously excluded constituencies has mainly taken the form of comparative case studies (yang & mccall 2014). none of these studies has focused specifically on swds.1 yet the latter have very particular individual funding needs depending on the type or severity of their disabilities. as a result of their varying and varied needs, swds differ with regard to the nature of the support that they require to function optimally in their everyday living and learning environments. in other words, while the overarching question of higher education funding is a burning one, swds cannot simply be addressed as part of the wider debate. moreover, as many scholars have pointed out, universities globally are experiencing a dramatic decline in government subsidies and an increase in student fees (de jager & gbadamosi 2010:254), which have negatively impacted on the functioning of universities. in 2014, mcgrath and colleagues conducted a comparative study which analysed admission systems to higher education across 10 european union member countries focusing on how these countries deal with the inclusion of swds (mcgrath et al. 2014:5). the study found that cutbacks in these countries’ public funding resources reduced or negatively impacted on equity in admission to higher education for many students, including those with disabilities in these countries (mcgrath et al. 2014:9). what follows is an attempt to describe disability funding mechanisms and approaches employed in a sample of democratic states both in the global north and the global south to gain an insight into how such mechanisms do or do not enhance access, equal participation, retention, success and equality of outcome for swds. the sampled countries represent a diversity of global north and global south examples, all of which have in common that they are signatories to the 2006 united nations convention on the rights of disabled persons (uncrpd), which obliges member states to ‘ensure an inclusive education system at all levels’ including higher education and to provide reasonable accommodations (ras) and appropriate support services tailored to individuals’ educational needs as a measure for ensuring that persons with disabilities (pwds) can participate effectively in a free society. these countries have each enacted non-discriminatory legislation and have put in place disability funding policies and mechanisms to facilitate the inclusion of swds in higher education institutions (heis), and to address their educational needs. the selected countries take a human rights-based approach, which prohibits discrimination against swds on the grounds of disability and this is also provided for, in most instances, in these countries’ constitutions. as democratic countries, the countries surveyed draw on a mix of principles of social justice, equality, widening participation, redress, equality of access, transformation, affirmative action principles, equality of opportunity and equity in their approach to promote access, retention and success in higher education for swds. research on funding of disability in heis has taken a dichotomous form with the global north countries on the one hand being associated with having progressive policies and practices which enable them to meet best practices criteria (eleweke & rodda 2002). in contrast, developing countries or the global south on the other hand have been discussed as either struggling or failing to meet these criteria because seldom do these governments and heis prioritise expenditure on inclusive education-oriented initiatives, including funding of disability (eleweke & rodda 2002). south africa and india fall into the category of global south countries. we compared south africa and india with global north countries because the two countries share the characteristic of being ‘countries in transition’ while at the same time being regarded as evincing best practices regarding disability inclusion compared to other global south countries. drawing on a directed content analysis of policy and other documents, the article argues that availability of adequate funding to heis to support students, including those with disabilities, is central to the maintenance and enhancement of quality education (daugherty et al. 2013:39). however, in the wake of government funding cuts, the privatisation of heis and overreliance on private sources to finance higher education, the trend is towards universities adopting selective inclusion of swds based on cost rather than on the principles of inclusion, access and equal chances of success for all. the study bowen (2009:27) describes document analysis as ‘a systematic procedure for reviewing or evaluating documents – both printed and electronic’. as a qualitative analytical research method, document analysis ‘requires that data be examined and interpreted to elicit meaning, gain understanding, and develop empirical knowledge’ (bowen 2009:27). for the purpose of this study the following documents were reviewed: the united nations convention on the rights of persons with disabilities (uncrpd) and the 1994 salamanca conference documents; peer-reviewed articles on inclusive education and disability in higher education; reports on disability retrieved from the official websites of the world health organisation, the united nations educational, scientific and cultural organisation (unesco); the organisation for economic co-operation and development (oecd); disabled world; university world news and times higher education. documents specific to the countries in the sample included: south africa – white paper 3 on higher education transformation; the 1997 white paper on an integrated national disability strategy; the 1997 higher education act; the 2001 national plan for higher education and the 2001 education white paper 6, special needs education: building an inclusive education and training system and national newspaper articles on the national student financial aid scheme (nsfas). india – the equal opportunities, protection of rights and full participation (pwd) act and the higher education for persons with special needs (hepsn) policy as retrieved from university grants commission official website. united states – section 504 of the rehabilitation act of 1973 and the americans with disabilities act of 1990 (ada); various policy documents reporting on the country’s federal student aid programme, known as the pell grant program; various oecd reports on the inclusion of swds in higher education and other reports from the us department of education. australia – the document known as a fair chance for all, which aims to increase the enrolments of swds in australian higher education as well as the 1992 disability discrimination act (dda) and various oecd reports on the inclusion of swds in higher education as well as national newspaper articles reporting on issues relating to the disability support program (dsp) which is the australian funding scheme for swds. canada – the canadian human rights act (chra) and the canadian charter of rights and freedoms (ccrf); the canada student grant for services and equipment for students with permanent disabilities (csgsespd) and the canadian province of ontario bursary scheme for students with disabilities (bswd) as well as oecd reports on the inclusion of swds in higher education retrieved from the ontario human rights commission website. united kingdom – the equality act, 2010; oecd reports on the inclusion of swds in the uk higher education system; newspaper articles reporting on the country’s various disability funding schemes; documents relating to the disabled students’ allowance (dsa) grant; premium funding and the higher education funding council for england (hefce) student opportunity funding. findings table 1 summarised the findings of the study. table 1: summary of findings. sampled countries’ funding trends the inclusion of swds in the uk heis is currently facilitated by the equality act, 2010 (c. 15). chapter 2 of the act prohibits discrimination against pwds in all spheres of their lives including in higher education. disability policies are not only aimed at widening access to higher education but also at promoting success in higher education for swds. widening participation is conceptualised as ‘opening higher education up to people who might not traditionally have considered university while improving retention, because students from different backgrounds need different support to complete their courses successfully’ (bourn 2007). to achieve these goals, the higher education funding council for england, for example, enjoins: all higher education providers and stakeholders [to] take a broad view of widening participation to encompass a student’s entire lifecycle: preparing for and entering higher education, graduating successfully, and progressing to employment or postgraduate study. (department for business, innovation and skills 2014:9) the uk’s higher education funding model for swds draws mainly on the principle of ‘equality in access to education’ (tumelty 2007) irrespective of ‘a person’s age, ethnicity, gender, disability and/or social background’ (department for business, innovation and skills 2014:7). the inclusion of disabled students in higher education has been supported by a number of measures, including the non-means tested dsa grant which: provides extra financial help if you have a disability or a specific learning difficulty like dyslexia. this is paid on top of the standard student finance package and does not have to be repaid. (disabled world 2016) full-time, part-time and postgraduate students can apply for dsa. premium funding is a funding allocation to heis to facilitate access for swds (research briefing 2008:2). through student opportunity funding, the hefce also provides funds to heis in recognition of the additional costs of recruiting, supporting and retaining swds (oecd higher education programme imhe 2014:20). in the usa, congress enacted section 504 of the rehabilitation act of 1973 as a measure to prohibit ‘discrimination against otherwise qualified persons with disabilities in any program receiving federal funds’ (wolanin & steele 2004:53). section 504 prohibits denial of admission to a person because of their disability (wolanin & steele 2004:34). with the passage of the rehabilitation act of 1973, which defined facilities that are ‘inaccessible to or unusable by handicapped persons’ to be a form of prohibited discrimination, incentives were put in place in the form of federal funding to heis to enable them to make their facilities such as lecture theatres accessible to swds (wolanin & steele 2004:34). the americans with disabilities act of 1990 (ada) played an important role in enhancing the inclusion of swds by prohibiting discrimination against these students on the grounds of disability. under the ada, discrimination against swds in american heis in relation to recruitment and admissions, academic and athletic activities, student examinations and evaluations, housing, financial aid, counselling, and career planning and placement is unconditionally prohibited (kalivoda & higbee 1994:133). the ada also provides for the accessibility of the built environment by requiring public and private heis that are recipients of state or federal funds to adopt ‘accessible design of public places and facilities for all people, making buildings and facilities easily accessible to people with disabilities’ (wolanin & steele 2004:54). the education of swds is financed by a federal student aid programme, known as the pell grant program, which supports eligible full-time swds (wolanin & steele 2004:ix–x). these students can apply for bursaries, non-repayable grants, loans or state or federally funded allowances managed by individual universities (oecd 2011:54). canada has taken a human rights approach to fostering the inclusion of swds (thomas 2012:58–59) as is reflected in the chra principle that all individuals, including pwds, should have equal opportunities and by prohibiting discrimination on the basis of disability (unesco 2015:37). in particular, the act prohibits the denial of education to pwds on the grounds of a disability as both discriminatory and illegal (unesco 2015:37). section 15 of the chra provides for ‘equality of all people under the law and protection of individuals against discrimination on the basis of disability’ (roeher institute 1996). the ccrf states that, ‘[e]very individual is equal before the law and has the right to equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on … mental or physical disability’ among other grounds (unesco 2015:37). the canada student grant for services and equipment for students with permanent disabilities (csgsespd) is a non-repayable grant designed to help students overcome educational disability-related barriers that they may encounter while pursuing post-secondary training (department of workforce and advanced learning student financial services (dwalsfs) 2016:2). eligible students under this programme ‘may receive funding of up to $8000 to cover the costs of needed goods and/or services that are directly related to overcoming the educational barriers that the disability may present’ (dwalsfs 2016:2). goods and/or services covered by the grant include, for instance, ‘tutors; specialised transportation (to and from school); note takers; interpreters; attendant care for studies; readers; alternate format; reimbursements for learning disability assessments; assistive technology’ (dwalsfs 2016:2). the canadian province of ontario bswd provides non-repayable financial assistance ‘to assist students in meeting additional costs of equipment and supplies related to their participation in post-secondary education, which the student must incur because of his or her disability’ (ontario human rights commission 2016). it is worth noting that 1990 saw the australian government target widening of access to heis for students from deprived socio-economic backgrounds (including swds) in its policy document a fair chance for all (department of employment, education and training (deet) 1990). the stated rationale was: to ensure that australians from all groups [including swds] in society have the opportunity to participate successfully in higher education. this will be achieved by changing the balance of the [university] student population to reflect more closely the composition of society as a whole. (deet 1990:8) a fair chance for all’s aims were twofold: firstly, ‘to double the present commencing enrolments of people with disabilities by 1995’ (department of employment, education and training (deet) 1990:40); and secondly, to ensure the participation with success of swds by making it ‘unlawful [for] the development or approval of curriculum that excludes people with disabilities from participation’ (brett 2010:4–5). subsequently, the dda of 1992 was passed, which obliges the australian government to support the participation of all pwds at all levels of education including making it unlawful to exclude swds from universities on the grounds of disability (maclean & gannon 1997:217). following south africa’s first democratic election in 1994, the policy context changed rapidly in support of increasing and broadening access to university study as one aspect of redressing past inequalities (cloete 2002). this commitment to equity and access was reflected in policy documents of the time (doe 1997; ministry of education 2001) and continues to be emphasised in more recent policy making (dhet 2012; national planning commission 2011). during apartheid, south african black learners with disabilities were low on the priority list of the national party government (fagin 2011:7). the 1948 special schools act (ssa) provided for a segregated education system, which categorised children with disabilities according to both race and disability (muthukrishna & schoeman 2000), which made it difficult for learners with disabilities to access heis. the post-apartheid african national congress (anc) government’s early policymakers developed several higher education policies aimed at ‘putting in place appropriate redress strategies for the past inequities of the apartheid era’ (mapesela & hay 2005:112) aimed at radical transformation of south africa’s higher education environment (badat 2010:2). ‘transformation’, thus, became a shorthand term to encapsulate a variety of initiatives aimed at ‘removing barriers and providing access to higher education for black students, disadvantaged groups, and women’ (belyakov et al. 2009:1). south africa’s post-1994 higher education disability policies (see, e.g., the 1997 white paper 3 on higher education transformation; the 1997 white paper on an integrated national disability strategy; the 1997 higher education act; the 2001 national plan for higher education and the 2001 education white paper 6, special needs education: building an inclusive education and training system) draw from the country’s constitution in their emphasis on the need to address the disadvantages that pwds experienced in the past and continue to experience, and the need to prioritise funding of higher education opportunities for swds in the present. education white paper 3 called for the establishment of a new funding mechanism to achieve the principles of equity and redress through the abolition of all forms of discrimination including on grounds of disability through empowerment measures, ‘including financial support to bring about equal opportunity for individuals and institutions’ (doe 1997:7–8). the 1996 green paper proposed the implementation of ‘funding mechanisms that will embody the principles of affordability, sustainability and shared costs, as well as those of equity, redress, development, democratisation, effectiveness and efficiency’ (doe 1996:6). the national plan for higher education calls on heis, through their institutional plans and strategies, to commit themselves to increase access for people with special education needs (ministry of education 2001:41). these policies have been applauded as ‘the best in the world, meeting internationally acclaimed standards’ (see, e.g., mapesela & hay 2005:112). in 1996, the nsfas – a student loan scheme to fund needy but capable students in higher education was established (cele & menon 2006:43). national student financial aid scheme caters for swds with an nsfas bursary scheme tailored to giving non-means tested financial support to swds to study at one of the country’s 23 public heis in south africa (national student financial aid scheme 2012a:3). through the nsfas scheme the government: intended to open opportunities in higher and further education and training and provide the necessary additional teaching and learning (curriculum) support for students to overcome any barriers to learning which have resulted from their disability. (nsfas 2012a:3) drawing on united nations (un) reports, thomas (2012:59) has singled out india as ‘ha[ving] the best disability policies among the developing countries’. india has committed considerable financial resources to the implementation of inclusive education at primary, secondary and higher education levels (thomas 2005). the education of swds is regulated by the 1995 equal opportunities, protection of rights and full participation (pwd) act, which prohibits discrimination in every sphere on the grounds of disability (thomas 2005). impact of disability policies on increasing the numbers of students with disabilities in higher education the general consensus within the reviewed literature in sampled countries is that these sampled countries’ funding mechanisms have positively resulted in a steady increase of swds in heis. in the uk context, for instance, it is worth noting that since 1997, the hefce has been instrumental in providing specific funding to heis to assist with the costs of delivering quality education for swds (department for business, innovation and skills 2014:64). in 2006–2007, for instance, it is estimated that the funding council allocated gb£13 million to heis to help in meeting additional costs in recruiting and retaining swds who are recipients of the dsa (national audit office 2008:6). in 2012–2013 alone: nearly £150 million was spent on dsa for some 60 000 students providing a range of specialist equipment, such as computer software for those with dyslexia, as well as modifications to accommodation and extra support to disabled students. (times higher education 2015) in 2013–2014, £15 million was delivered by the hefce through its mainstream disability allocation, that is, around 4.5% of the total 2013–2014 hefce targeted allocations for widening participation and improving retention, which was £332 million (department for business, innovation and skills 2014:64). disability funding has resulted in most uk universities successfully supporting the inclusion of swds particularly those which have adopted ‘an inclusive model that seeks to ensure all aspects of the institutional offer are accessible to disabled students’ (department for business, innovation and skills 2014:64). against this background, bourn (2007) has attributed the increase in the number of students declaring a disability entering higher education by over two-thirds between 2000–2001 and 2005–2006, from 82 000 to 138 000, to the dsa as these students were dsas recipients. research in the usa has shown that as a result of supportive funding mechanisms the numbers of swds in heis tripled over the past 20 years (myers 2008). pell grant, for instance, awards amounted to some eur 15 million in 2009 (oecd 2011:54). the passage of anti-discriminatory legislation in the 1990s in canada facilitated inclusive education, and changes in the attitudes of canadian society. the number of swds attending post-secondary education increased steadily. for instance, the oecd estimated that in canada’s ontario province swds’ enrolment rose from 1668 in 1989–1990 to 6883 in 2000–2001 (oecd 2003). while in 1995 a mere 0.25% of swds registered to receive disability-related services in 47 canadian universities, in 2003 this percentage had increased to 5.67% (fichten et al. 2003). from 2001 to 2013, education rates of canadian individuals with disabilities increased by 12.3%, with 74.6% of working-age adults with disabilities obtaining a high school diploma or higher educational certification (hrsd 2013). because of expansive financial support provided to swds, australia experienced increased enrolments of swds in higher education, with students with learning disabilities being the largest enrolment group (noble 1993). in 2012, nearly 6000 swds accessed equipment and educational support made available by australian universities using dsp funds (oecd higher education programme imhe 2014:4). in 2014 under the dsp, $6.9 million was made available to universities for this purpose. the introduction of the nsfas scheme in south africa has translated into many visible changes in the sector as evidenced by the increase in the number of swds enrolling in heis (wilson-strydom 2015:144). in the 2011 academic year alone, government earmarked r76.8 million ‘to increase the funding available to swds and learners with special needs’ (university world news 2011). according to information recorded in the higher education management information system (hemis) this allocation of r76.8 million subsequently saw an increase in the ‘number of enrolled students with disabilities from 5856 in 2011 to 7110 in 2013’ (hammond 2015). through nsfas, r45.5 million in bursaries went to 1368 swds in 2012 and r69.9 million benefited 1383 swds in 2014 (hammond 2015). india has also witnessed a significant increase in the number of swds in heis, which many have attributed to the policy of inclusive education backed by the availability of financial support (shenoy 2011:5). these policies include the persons with disabilities act (1995), which ‘came into action by bringing into sharp focus the state’s responsibility to empower the disabled with equal opportunities, protection of rights and full participation in the country’s development process’ (the tenth five year plan 2002–2007:471). the act obliges heis to provide equal access and proportionate opportunities to excel in education at all levels (pillai 2012:15). proponents have applauded the act for its adoption of an affirmative action approach (kumar 2012). section 39 aims to achieve the goal of increasing access to education for swds through mandating all public heis that are government aided to reserve a 3% quota for swds (krishnan 2012:6). students with disabilities enrolling in indian colleges are exempted from paying fees if they are not able to obtain financial assistance and each university receives a one-time grant of 1 000 000 rupees as an incentive for enrolling the maximum number of swds (jameel 2011:15). the hepsn scheme established by the indian government provides grants to support the setting up of disability units in universities on condition that the applying university has a sufficient number of students with documented disabilities (krishnan 2012:6). angela kohama has argued that india’s persons with disabilities act ‘functioned as a catalyst for several other development projects around inclusion and disability’ (kohama 2012:21–22). in addition to the hepsn scheme, provisions have been made for ‘incentives such as scholarships, both domestic and overseas to the swds with good academic records in higher education’ (jameel 2011:6). impact of sampled countries’ funding mechanisms global research on retention has pointed to the availability of adequate financial aid as one of the most important determining factors when it comes to low-income and minority students enrolling in, and persisting to, degree completion in heis (swail 2004:9). as a number of studies have shown, funding is critical to the challenge of increasing enrollments of swds in heis (see, e.g., jameel 2011:15; katsui 2009; research briefing 2008:2). prior to the 1970s, many swds both in developed and developing countries found it difficult to access higher education (he) unless they had considerable personal means at their disposal (kamalam et al. 2004:332). availability of funding resulted in ‘disabled people increasingly hav[ing] access to educational opportunities that were not available to them in the past’ (foley & ferri 2012:192). the growing proportion of swds enrolled in oecd countries’ higher education has been attributed to the introduction of financial incentives resources provided to heis (oecd 2003), which ‘offset the additional costs that the presence of a student with special education needs may represent for the institution’ (oecd 2011:55). it has been seen that the sample countries’ response to prioritising increasing access to heis for swds gained momentum in the early 1990s following the 1998 unesco world conference on higher education leading to global international calls for greater ‘equality of access’ (unesco 1998). although all the sampled countries have supportive disability policies, however, in practice these countries are struggling to meet the goals outlined in their policies. as for the uk, an overall increase in reliance on private funding as a source of heis’ income (european union 2014:28) and cuts to dsas have resulted in swds being in debt as well as care cuts resulting in swds not, for example, having access to a personal assistant to make it physically possible to get to lectures (ryan 2017). cuts to dsas were first proposed in 2014 when david willetts, the then universities minister, announced a change in approach to the funding of computer equipment, software and consumable items through dsas (dunn 2016). in september 2015, the uk government officially confirmed that it would reduce direct public support for swds by making £30 million in cuts to dsa funding for swds in higher education (dunn 2016). willets urged universities to provide the support that was once provided by the dsa but without any funding allocated to cover the cost of this support. in other words, without allocated funding universities are expected to pick up the tab for items that the dsa used to cover including, for instance, ‘funding the provision of non-medical support staff, such as scribes, note takers, readers, proof-readers and sign language interpreters’ (dunn 2016). a particular worry is that these cuts to the dsa will disproportionately affect smaller institutions, which may lack the resources to fund adequate support for swds. the national union of students (nus) protested against the government’s intentions to cut funding when it was first announced in june 2014 and branded them as ‘arrogant and out of touch’ (times higher education 2015) with recent figures showing that approximately 70 000 students would be affected (dunn 2016). the announced changes to the dsa will undoubtedly jeopardise access and success for swds (government united kingdom 2016). given that one of the core services being targeted is funding for assistive technology, such as laptops with specialist digital voice recording, it has been argued that students with a specific learning disability like dyslexia will be notably affected by this move as these students rely most on a range of specialist equipment (times higher education 2015). however, the us recession of 2007 to 2009 saw federal cuts and some universities increasing their tuition fees (camera 2016). the us heis face the challenge of ‘programs that should cooperate and coordinate to the benefit of swds often [competing] with each other to the detriment of these students’ (moore 2003:9–11). growing numbers of swds pose a huge challenge primarily to heis, whose federal funding campus-based programmes such as perkins loans, supplemental educational opportunity grants and college work study are inadequate because the demand for funds far exceeds the available funds (wolanin & steele 2004:60). despite the obligations imposed by the rehabilitation act of 1973 upon heis in relation to ras for swds, in the context of budget constraints, many institutions object strongly to the cost of compliance (scotch 2001:125). in the canadian context, there are limitations – while in terms of the csgsespd grant recipients receive up to $8000 to cover the costs of academic-oriented needs, ‘the grant cannot be used to cover the cost of tuition, books, or items that are considered general requirements for the program’ (dwalsfs 2016:1), which means that these students have to pay out of pocket for these costs. similarly, financial assistance provided under the bswd is restricted to purchasing specialised equipment and services required for participating in he studies and not ra related to tuition, books and housing expenses, which are the obligation of heis (ontario human rights commission 2016). in 2016, although the federal budget allocated $118.2 million over 2 years for students with a disability, the funding targeted schools and saw cuts of $152.2 million over 4 years to the higher education participation program, which funds canadian ‘universities to bring in students from the lowest socio-economic levels [including swds]’ (ryan 2017). in australia, the dda regulates how ras2 should be applied in higher education environments and places ‘a duty on institutions to make reasonable and anticipatory adjustments for disabled students in relation to teaching, learning and assessment’ (research briefing 2008:2). services supported by the dsp include production of course materials and lecture notes in braille, assistance with examinations and other assessment tasks and ‘purchase of adaptive software and/or adaptive computer equipment such as adaptive keyboards, mouse, screens, etc’. (oecd higher education programme imhe 2014:4). the passage of australia’s dda standards for education of 2005 saw the introduction of equity standards for the elimination of discrimination against pwds in terms of their access to services and education (dsd, dwcpd & unicef 2012:99). in south africa, public heis’ budgetary constraints dating back to the late 1990s have inhibited the achievement of these aspirations: ‘university funding declined in terms of the proportion of total state finance committed to higher education from 4% in 1999 to 2.5% in 2007 forcing universities to raise tuition fees sharply’ (shrivastava & shrivastava 2014:815). although the ‘nsfas will aid well over 400‚000 students on a budget of r15-billion this year, [2017]’ (collins 2017), nothing has been said yet as to whether the government will make similar increases to funding for swds. national student financial aid schemes swd recipients increased from 701 in 2004 to 1112 in 2007 and dropped to 649 in 2009 (nsfas 2012b). delays of nsfas bursaries reaching swds negatively resulted in many of these students dropping out (dhet 2009:24). south african heis’ disability units have an obligation to provide sign language interpreters to help with the inclusion of students who are deaf, but this is a costly option resulting in institutions resorting instead to purchasing assistive devices, which is not the optimal outcome for these students. south african students who are deaf are currently facing the challenge of the unavailability of professional south african sign language interpreters, which has forced these students to rely on ‘fake’ sign language interpreters who also ‘take advantage of deaf students, because they are desperately in need of access to education and will not complain about the lack of good sign language skills from the interpreters’ (dhet 2015:10). a 2011 study that sampled disability unit staff from 15 south african heis (fotim 2011) highlighted the fact that students who are deaf and hearing impaired who were nsfas funding recipients expressed concerns over insufficiency of funding which forced them to resort to additional sources such as disability grants and parents’ contributions as a way of supplementing their funding (fotim 2011:83). the study also found that disability bursaries and scholarships often do not cover personal needs such as caregivers, for example, for quadriplegics (fotim 2011:84). in india, research indicates that advances in access and equity are threatened by steadily declining financing of heis by the indian government since the mid-1990s, which has resulted in higher education increasingly being ‘financed by non-government money, including household expenditures, fees, student loans, and voluntary contributions’ (prakash 2007 cited in yang & mccall 2014:28). these challenges which continue to be faced by the sampled countries clearly shed light on the fact that the mere provision of funding does not guarantee success once swds are enrolled (belyakov et al. 2009:24). as defined by belyakov et al., ‘access with success goes a step further, defining true access as completion of a degree or certificate program that prepares one for a vocation’ (belyakov et al. 2009:1–3). the provision of funding alone does not result in the realisation of meaningful inclusive education (ferguson 2008). access and presence in ‘mainstream’ classrooms and schools are a necessary – but clearly not sufficient – step towards inclusive education for swds. discussion as bowen (2009) points out, document analysis can provide a means to track change and historical processes. here, we track a process of the countries selected for review putting in place funding mechanisms and policies, leading to an increase in the participation rate in higher education of swds, followed by subsequent funding cutbacks and the privatisation and marketisation of higher education leading to the erosion of some of these gains. in the context of budget constraints, we see a pattern of heis falling back to a position of minimal accommodation for swds and an approach of minimal legal compliance rather than seeing their responsibility as extending to the fullest possible realisation of the equal right to access and success of swds. a comparative analysis of the sampled countries’ funding mechanisms shows that these countries have had considerable successes in relation to increasing access to higher education for swds. however, declining government support for education has led to a massive rise in the for-profit education industry, which has influenced the way in which universities set their funding priorities (kenway et al. 1993:2) and has resulted in ‘an ideological shift towards higher education as a private rather than a public good’ (meek 2000:24). in the words of newman and jahdib (2009:1), this has led to ‘a paradigm shift’ in the form of the ‘so-called marketisation of education’. according to de jager and gbadamosi (2010:254), the marketisation of higher education has resulted in ‘a more competitive educational environment’ in which universities compete with one another ‘for students, resources and prestige’ (meek 2000:23) and in which students are framed as consumers of education (molesworth et al. 2009:277). these shifts have taken their toll on social inclusion initiatives. this is not a phenomenon of the developed world alone. government funding cuts lead to rising operational costs, hiring freezes and large classes (shrivastava & shrivastava 2014:815) – all of which have the potential to negatively impact the inclusion of swds. while all the countries surveyed here are signatories to the uncrpd of 2006 (dsd et al. 2012:19), the economic context impinges on their ability to fulfil their obligations in terms of the convention not only with respect to the provision of funding to afford access to higher education for swds but also to cover expenses such as ‘auxiliary aids to provide accommodations to students with disabilities’ to achieve ‘a level playing field’ in higher education (wolanin & steele 2004:58). reliance on private rather than public funding has seen most universities breaching these obligations and serving market-driven rather public interests in relation to human health, safety or well-being (côté-boucher 2010). the consequences have proved detrimental to swds as their heis lose autonomy to private funders. elaborating on this, jung (2003) argues that this has resulted in universities fulfilling only their most ‘minimal’ legal and moral obligations to provide ras to swds – principally disability accommodations necessary for their successful participation in the classroom. by relying on private funding sources institutions are limited to the restrictions that come with donations – with private funders, for example, regarding personnel costs as the institution’s responsibility and preferring to pay only for equipment rather than sign language interpreters (howell 2005:10). this exclusion has, according to eleweke and rodda (2002:115–116), created an unfavourable situation where upon gaining admission these students ‘are [left] on their own as they receive no special support to help them on their courses’. the rationale behind selective inclusion is the marketised framing of these students as difficult to accommodate as a result of needing ‘too much’ specialist assistance (singal 2005:6). under this selective inclusion approach, students who are deaf are being poorly served especially in countries like south africa as nsfas guidelines ‘do not fund human support (scribes, sign-language interpreters and note takers, etc.)’ (fotim 2011:137). the same holds true for some indian heis such as adarsh college in chamarajpet, bengaluru university and delhi university where the absence of sign language interpreters has forced some students who are deaf to pay out of pocket themselves for lessons with private interpreters at exorbitant rates (krishnan 2012:7). in contrast, australia stands out among the sampled countries as having been able to maintain good practices despite the challenges of budgetary constraints as it has responded positively to the increasing enrolment levels of deaf and hard of hearing in its heis by employing more and more interpreters (knuckey et al. 2001; see also oecd higher education programme imhe 2014:4). following howell, achieving genuine inclusive education for swds does not merely end with dismantling physical access barriers to heis, but most importantly through also putting in place mechanisms that can provide additional support to those swds who may require it (howell 2005:13). however, evidence from our findings indicates that this has not come to reality as most heis seem to focus mainly on achieving physical access for swds, thus leaving their academic success in jeopardy. as one lancaster university dsa recipient who has autism commented: just because i made it to university, does not mean i’ll cope without support … without dsa, the trivial things would become impossible for me – this also applies to many future disabled students, who are being ignored by the government. (times higher education 2015) students with disabilities must meet these additional costs in the course of coping with their disabilities, but often their incomes are lower than those of their non-disabled peers, which means that their dependence on state funding is higher, yet ‘their opportunities have been diminished by the inadequate levels of financial aid, particularly grants’ tailored for low-income swds (wolanin & steele 2004:ix–x). funding cutbacks have meant that heis do not have enough funds available to meet all the needs of swds, resulting in swds themselves having to bear some of these costs out of pocket (wolanin & steele 2004:58). similarly, ‘the availability of state and institutional financial aid funds also is limited by either award limits or an excess of demand compared to funding’ (wolanin & steele 2004:60). in both global north and global south, pwds are considered among the world’s most vulnerable and least empowered groups (khasnabis et al. 2010:11). this vulnerability of pwds has been attributed to high levels of poverty, which has resulted in this group’s experiencing worse edu-cational and labour market outcomes in comparison to their non-disabled peers (world health organization (who) & world bank 2011:39). the findings of this study show that the funding mechanisms of sampled countries still deny swds the capabilities to escape the poverty cycle by empowering themselves through acquiring tertiary education, which enhances their prospect of employment. this is particularly true of swds who are reliant on assistive technology, which is not covered in most of the sampled countries’ funding mechanisms. this becomes a violation of inclusive education as provided in the uncrpd, which imposes a responsibility on state parties to honour their responsibility to promoting and ensuring the availability and access to assistive technologies for swds if they are to participate fully in the classroom setting (united nations 2006:6). we critique the incentivisation of disability inclusion which is prevalent in the usa (wolanin & steele 2004:34), canada (oecd higher education programme imhe 2014:4) and india (jameel 2011:15) where funding to these countries has been allocated based on a number of swds enrolled annually. although we acknowledge that in the wake of serious resource constraints heis will need funding and resources should be made available to assist them in driving the disability agenda (fotim 2011:14), we argue that this approach will continue to benefit bigger heis in cities at the cost of smaller heis, especially those in under-resourced rural settings. in india, for instance, given the abundance of assistive technology, the indian institute of technology in delhi has attracted many swds nationwide to come to study there (joseph 2012:1), which means that this institution will always receive more funding than other indian universities. likewise, despite the fact that south africa has leading universities which are internationally respected, because of the legacy of apartheid historically black universities continue to face severe financial, human, infrastructure and other resource constraints (badat 2015). unlike south african historically white institutions, some of these historically black universities still do not have disability units, which makes them unwelcoming to students with diverse disabilities. seen from this perspective, we propose the need for the sampled countries to provide disability funding as per provided in their individual funding mechanisms as well as per the provisions of the uncrpd and they should pay particular attention in prioritising the funding for smaller universities and universities of technology. conclusion the oecd has pointed to inadequate funding as one of the hindrances to the successful transition to tertiary education for swds (oecd 2011:69). living with a disability entails expenses such as trips to doctors, therapists, counsellors and administrators (wolanin & steele 2004:61). while under all the sampled countries’ funding models, swds are entitled to funding to offset the extra costs of living with a disability or a specific learning difficulty (oecd 2011:55), the current financial context sees institutions facing challenges with the provision of adequate funding to cover the extra costs which are incurred by swds in the course of pursuing their studies in heis. while the increase in numbers of swds enrolling in heis was, as we saw above, made possible by publicly funded grants, with declining public funding, there is a high possibility that numbers will once again fall. as access to grants and scholarships narrows, ‘low-income students with disabilities [who] generally have a greater need for financial aid than their peers without disabilities’ will be most affected (wolanin & steele 2004:63). although the sample countries have widely embraced the practices of inclusive education as an ideal model for education (maher 2009), these countries still have a long way to go with regard to adequately financially supporting swds in a manner which widens their opportunities to access, participate in, be retained in and succeed in heis. because of funding challenges, it can be argued that inclusive education is being implemented narrowly in these countries in a way which perpetuates the exclusion and marginalisation of swds. as a result, the principle of inclusive education ‘increasing participation and reducing exclusion, in a way that effectively responds to the diverse needs of all learners’ (kaur & arora 2014:59) is routinely violated in practice. because of inadequate funding, we see many countries resorting to selective inclusion or what ndlovu and walton (2016:7) have referred to as an ‘impairment based approach’ in supporting swds in which only particular categories of disability are accommodated by specific institutions. impairment-based approaches have often seen heis prioritising providing ras to certain categories of swds at the cost of others. for example, students who are deaf fare differently compared to other students because of the shortage of, and cost involved in providing, fluent sign language interpreters. this violates the overarching goal of inclusive education which is to ensure the participation of all swds in quality education to develop the full potential of these students (kaur & arora 2014:59). the result of prioritising some groups of swds at the cost of others is a form of selective inclusion determined by cost rather than meeting individual needs regardless of cost. acknowledgements we would like to acknowledge and express that we are grateful for the financial support received from the national institute for the humanities and social sciences (nihss) towards this study. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions this 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impairments and attitudinal and environmental barriers that hinder their full participation in society on an equal basis with others’ (united nations 2006:5). 2. kraglund-gauthier and colleagues have defined ras as: involv[ing] minor changes that assist a student’s functioning in the classroom by offering alternate ways of handling a task; for example, providing photocopied notes to a student with muscular dystrophy who has difficulty with writing. (kraglund-gauthier et al. 2014:2) common forms of accommodations in the postsecondary context would, for example, include provisions such as ‘extended time on exams, alternative exam formats, and assistance with note-taking, study skills, and learning strategies’ (lombardi et al. 2011:250). introduction the challenge of language and culture in mental health service delivery recommendations conclusion acknowledgements references about the author(s) grace n. wambua department of research, africa health research institute, durban, south africa sanja kilian department of psychiatry, faculty of medicine and health sciences, stellenbosch university, cape town, south africa lucinda manda-taylor department of health systems and policy, kamuzu university of health sciences, blantyre, malawi victor v. mkhize school of religion, philosophy and classics, college of humanities, university of kwazulu-natal, pietermaritzburg, south africaumsamo institute, albert falls, south africa bonginkosi chiliza department of psychiatry, school of clinical medicine, university of kwazulu-natal, durban, south africa citation wambua, g.n., kilian, s., manda-taylor, l., mkhize, v.v. & chiliza, b., 2025, ‘reimagining language access in mental healthcare through cultural integration in kwazulu-natal’, african journal of disability 14(0), a1685. https://doi.org/10.4102/ajod.v14i0.1685 note: the manuscript is a contribution to the themed collection titled ‘growing disability studies on the african continent: the career contribution of prof. leslie swartz’ under the expert guidance of guest editors prof. brian watermeyer and prof. lieketseng ned. community paper reimagining language access in mental healthcare through cultural integration in kwazulu-natal grace n. wambua, sanja kilian, lucinda manda-taylor, victor v. mkhize, bonginkosi chiliza received: 25 feb. 2025; accepted: 21 july 2025; published: 30 nov. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. introduction south africa’s complex linguistic landscape reflects its historical legacy of segregation and inequality. despite constitutional guarantees of language rights and healthcare access (department of public service and administration 1997; republic of south africa n.d.; republic of south africa 2004), the dominance of english and afrikaans languages in mental health services perpetuates barriers to mental healthcare for the majority of south africans (deumert 2010; swartz & drennan 2000). work carried out with prof. swartz in the western cape highlights the unfortunate, yet pervasive challenges in providing adequate mental healthcare due to language barriers (benjamin et al. 2016; hagan et al. 2013, 2020; hunt & swartz 2017; kilian et al. 2014, 2021). his work has explored the use and reliance on informal interpreters, and the diverse roles they assume in clinical consultations (hagan et al. 2013; kilian, swartz & chiliza 2015; swartz et al. 2014). in kwazulu-natal, where isizulu is the predominant language among patients, the ongoing and pervasive disconnect between healthcare providers and patients’ languages represents more than just a communication gap; it embodies ongoing systemic inequities and healthcare delivery injustices. the historical use of language as a ‘marker of difference to justify segregation and oppression’ (elkington & talbot 2016) continues to influence contemporary mental healthcare, with less than 5% of health professionals being able to conduct clinical interviews in patients’ home languages (levin 2006). at the university of kwazulu-natal, medical students undergo a one-year isizulu clinical communication teaching and learning programme to improve their communicative competence, which is necessary for effective communication with patients. sadly, a study by matthews in 2012 found that while their competency in isizulu had improved, students rarely used the language in the clinical setting (matthews 2013). the current situation in kwazulu-natal mirrors broader national challenges in mental healthcare accessibility. the reliance on ad hoc health sector staff, who are untrained in the practice of translation, as interpreters – often cleaners, security guards, or other available staff – is standard practice, despite its significant limitations (kilian et al. 2014). research has shown that untrained interpreters are more likely to make clinically significant errors that can affect diagnosis and treatment (al shamsi et al. 2020; hagan et al. 2013; karliner et al. 2007), often resulting in patients appearing more psychiatrically ill than they actually are. this makeshift approach also raises serious confidentiality concerns, particularly in mental health settings where sensitive personal information is discussed (elkington & talbot 2016). additionally, impromptu interpreters often lack awareness of their professional boundaries and ethical obligations (blake 2003; elkington & talbot 2016; smith et al. 2013). for example, lay interpreters working as security guards or cleaners may be from the same geographic area, community and social groups (i.e. churches) as the patients, and are unlikely to recognise the importance of rules of confidentiality and objectivity, raising ethical concerns. the challenge of language and culture in mental health service delivery the effects of inadequate language access or proficiency extend beyond simple barriers to communication. introducing an interpreter significantly alters therapeutic dynamics, creating a complex three-way relationship that requires careful management (elkington & talbot 2016; hunt & swartz 2017). language barriers often intersect with cultural differences including gender and power dynamics and may affect the expression, understanding, and treatment of mental health symptoms (smith et al. 2013). without proper cultural awareness, clinicians may miss crucial culturally-informed symptoms that can inform the diagnosis and treatment (hagan et al. 2020; krystallidou et al. 2024; penn & watermeyer 2012a). additionally, staff members serving as informal interpreters face conflicting responsibilities between their primary duties and interpretation tasks, which can compromise both their regular work and the quality of their interpretation services (penn & watermayer 2012b; smith et al. 2013). prof. swartz’s work underscores the broader challenge of language and cultural diversity in mental health service delivery in lowand middle-income countries (lmics), and advocates not only for improved language services, but also for knowledge-sharing to enhance care in resource-constrained settings (swartz et al. 2014). moving beyond conventional interpretative approaches, we propose a framework that integrates traditional healing systems and community cultural expertise. building on the concept of interpreters as cultural brokers (miller et al. 2005; penn & watermayer 2012b), we suggest formal partnerships with traditional health practitioners, who can provide much better cultural context and interpretation capabilities. this approach acknowledges the importance of indigenous knowledge systems in mental healthcare while maintaining professional standards (zuma et al. 2016). drawing from the successful human immunodeficiency virus (hiv) and acquired immunodeficiency syndrome (aids) programmes in kwazulu-natal (moshabela et al. 2016; zuma et al. 2017), we propose a model in which professional interpreters work alongside traditional healers (who have extensive cultural knowledge) and community health workers to provide comprehensive language and cultural support. literature highlights the significant role played by traditional and faith healers in mental healthcare provision in sub-saharan africa (ssa), often serving as the first point of contact for individuals seeking treatment (ae-ngibise et al. 2010; berhe, gesesew & ward 2024; williams et al. 2025). while this preference is often influenced by various factors, including limited access to biomedical services, cultural beliefs, and social norms, they have been shown to contribute to improved health outcomes (berhe et al. 2024). traditional healers provide culturally embedded meanings of mental illness or explanations of distress, which are perceived as more relevant and meaningful than biomedical diagnoses that can feel foreign, far removed from people’s everyday lived experiences (crawford & lipsedge 2004; moonsamy & gurayah 2024). as such, the use of traditional healers as interpreters (or alongside professional interpreters) can additionally support the integration of traditional and biomedical approaches to enhance mental healthcare delivery in culturally rich isizulu communities in the province of kwazulu-natal (berhe et al. 2024; williams et al. 2025). to make this a reality will require formal partnerships that recognise the authority of traditional healers within their communities while offering clear guidelines for ethical collaboration, which can include joint referral arrangements, healer-led psychoeducation sessions, and shared care protocols. studies in ghana (ae-ngibise et al. 2010) and uganda (abbo 2011) have highlighted the benefits of similar structured partnerships to treatment adherence and trust between communities and the health systems. we therefore suggest a collaborative role with traditional healers acting as cultural brokers which includes interpreting idioms of distress back into experience, describing culturally relative aspects of ‘symptoms’ to clinicians, and working to align clinicians’ therapeutic recommendations with patient’s belief systems. this engagement may also facilitate early identification and treatment of mental disorders by counteracting help-seeking by counteracting help-seeking delays. recommendations based on this evidence, we recommend several concrete implementation steps. to begin, there is a need for institutional changes which will be crucial for sustainable improvement. literature has shown that dedicated interpreter services enhance patient experience, increase return rates, and improve satisfaction, medication adherence, and treatment compliance (elkington & talbot 2016). we recommend the creation of dedicated interpreter positions within mental health facilities to address the current problematic reliance on informal interpreters (benjamin et al. 2016; drennan & swartz 2002). the additional implementation of preand post-session briefings between clinicians and interpreters has been shown to improve therapeutic outcomes (benjamin et al. 2016; gartner et al. 2024). clear protocols for interpreter-mediated sessions are essential, particularly given the complex dynamics of therapeutic relationships in mental healthcare (benjamin et al. 2016). additionally, healthcare institutions should establish formal culturally sensitive training programmes for healthcare interpreters (including traditional healers) specialising in mental healthcare and support. ideally, this could take a collaborative approach involving co-training initiatives, where interpreters and traditional healers are equipped with foundational knowledge in mental healthcare, cultural brokerage, and confidentiality. in this collaborative model, interpreters would not only facilitate linguistic translation but also bridge semantic gaps in how symptoms are described, while traditional healers support interpreters in decoding idioms and metaphors that are deeply culturally situated. in turn, interpreters can help convey healers’ insights in clinical settings with appropriate nuance and clarity. ongoing supervision and support for interpreters should be provided to prevent vicarious trauma, and develop cultural competency training for mental health professionals (delizée & bennoun 2024). the risk of vicarious trauma for interpreters is particularly concerning, as research has shown significant psychological impacts on interpreters working in mental health settings without adequate support systems (geiling et al. 2021). while there is need for formal interpreters, south african institutions also need to empower mental healthcare practitioners with basic language skills, particularly in african languages like isizulu which are the most spoken languages in south africa. in kwazulu-natal, this could be built on the backbone of the one-year isizulu clinical communication teaching and learning programme for undergraduates and postgraduates, focusing on improving proficiency among healthcare workers. quality assurance measures must be established to ensure effective service delivery. this includes developing standards for mental health interpretation, regular evaluation of interpreter services, and creating feedback mechanisms for patients and providers (benjamin et al. 2016). research has shown that when interpreters are properly trained and supported, the quality of care and levels of satisfaction for patients with limited english proficiency can approximate that of patients without language barriers (karliner et al. 2007). cultural competence in mental healthcare delivery requires more than just linguistic translation. it necessitates understanding the often-complex cultural context of mental health experiences and expressions (swartz & kilian 2014). the role of interpreters as cultural brokers is particularly important in the south african context, where traditional healing systems and western psychiatric approaches often intersect (penn & watermayer 2012a). however, care must be taken to avoid oversimplifying cultural differences or assuming that interpreters can speak for entire cultural groups. looking to the future, while maintaining the primary importance of human interpretation in mental healthcare, technology offers potential supplementary solutions. digital platforms could support interpreter training and supervision, particularly in rural areas where access to professional development opportunities is limited. however, introducing technology in mental healthcare should be navigated with caution (kolding et al. 2024; seedat 2024), with a focus on ethical and meaningful inclusion of technology in ways that complement rather than replace human interpreters, especially given the nuanced nature of mental health communication (kilian et al. 2014). developing specialised mental health interpretation applications – many of which may be informed by artificial intelligence (ai) – and remote interpretation services could help address some access issues, particularly in underserved areas. however, as ai in particular is challenged with an underrepresentation of african languages like isizulu for natural language processing (nlp) and machine learning (ml), we strongly advise that users critically evaluate their outputs before including them in mental healthcare setting. most importantly, research and clinical priorities should include evaluation of innovative interpretation models, investigation of patient outcomes with different interpretation approaches, and cost-effectiveness assessments of technology-supported and non-technology-supported formal interpreter services. these studies should consider both the direct impacts on clinical care and broader implications for mental health service accessibility (swartz et al. 2014). the experiences of other countries in developing professional interpreter services can inform south african efforts, while acknowledging the unique local context and resource constraints (elkington & talbot 2016). conclusion addressing language barriers in mental healthcare requires a comprehensive approach that goes beyond basic translation. by integrating cultural expertise through formal collaborations with traditional health practitioners and community health workers, while maintaining standard professional guidelines, we can work towards more equitable and effective mental healthcare delivery in kwazulu-natal. success will require sustained commitment from policymakers, healthcare administrators, and practitioners, alongside adequate resource allocation and ongoing evaluation of outcomes. the right to mental healthcare in one’s own mother tongue is not merely a matter of convenience but a fundamental aspect of healthcare justice and human dignity (swartz & drennan 2000). acknowledgements we would like to acknowledge dr olivia matshabane of stellenbosch university for comments on an earlier draft of the commentary. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions g.n.w., s.k. and b.c. contributed to the conceptualisation and writing. l.m.-t. and v.v.m. also contributed towards the writing of the article. funding information this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. data availability the authors confirm that the data supporting this study and its findings are available within the article. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. the authors are responsible for this article’s results, findings, and content. references abbo, c., 2011, ‘profiles and outcome of traditional healing practices for severe mental illnesses in two districts of eastern uganda’, global health action 4(1), 7117. https://doi.org/10.3402/gha.v4i0.7117 ae-ngibise, k., cooper, s., adiibokah, e., akpalu, b., lund, c., doku, v. et al., 2010, ‘“whether you like it or not people with mental problems are going to go 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acknowledgements references about the author(s) annabelle de serres-lafontaine department of rehabilitation, faculty of medicine, université laval, quebec, canada center for interdisciplinary research in rehabilitation and social integration (cirris), quebec, canada delphine labbé department of disability and human development, university of illinois at chicago, illinois, united states charles s. batcho department of rehabilitation, faculty of medicine, université laval, quebec, canada center for interdisciplinary research in rehabilitation and social integration (cirris), quebec, canada lucy norris motivation charitable trust, bristol, united kingdom krista l. best department of rehabilitation, faculty of medicine, université laval, quebec, canada center for interdisciplinary research in rehabilitation and social integration (cirris), quebec, canada citation de serres-lafontaine, a., labbé, d., batcho, c.s., norris, l. & best, k.l., 2023, ‘social participation of individuals with spinal injury using wheelchairs in rural tanzania after peer training and entrepreneurial skills training’, african journal of disability 12(0), a975. https://doi.org/10.4102/ajod.v12i0.975 original research social participation of individuals with spinal injury using wheelchairs in rural tanzania after peer training and entrepreneurial skills training annabelle de serres-lafontaine, delphine labbé, charles s. batcho, lucy norris, krista l. best received: 08 nov. 2021; accepted: 10 apr. 2022; published: 12 jan. 2023 copyright: © 2023. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: individuals with spinal cord injury (sci) in less-resourced settings reported barriers to community integration, including inaccessible rehabilitation services, restricted environments and limited social integration. peer training and entrepreneurial skills training are provided by motivation, a nonprofit organisation, and moshi cooperative university to enhance occupational engagement of individuals with sci in less-resourced settings. objective: this study aimed to explore the impact of peer training and entrepreneurial skills training on the social participation of individuals with sci living in tanzania. method: using a qualitative photovoice approach, 10 participants captured meaningful photos and provided captions according to five standardised questions (photo technique) to convey their messages. participants selected up to 34 photos that best illustrated their experiences in the community. a mixed inductive–deductive thematic analysis was guided by the international classification of functioning, disability and health. results: two interrelated themes emerged: (1) ‘influencing factors’, which revealed how participants’ inclusion in the community was influenced by their activities and personal and environmental factors and (2) ‘empowerment’, which highlighted participants’ desire to advocate and promote awareness of needs and hopes. conclusion: participants emphasised the importance of accessibility and equal opportunities. whilst some were able to overcome obstacles, others experienced continued inaccessibility that inhibited meaningful occupations. daily participation challenges of individuals with sci in rural tanzania were highlighted. although the motivation programmes were perceived to have powerful impacts on social participation, continued efforts and advocacy are needed to overcome accessibility issues and to meet the physical, psychological and social needs of tanzanians living with sci. contribution: this article highlights the importance of accessibility and equal opportunities for individuals with disability living in rural tanzania. peer-training and entrepreneurial programs offer community-based rehabilitation services that were perceived by people with disabilities to have a powerful impact on social participation and vocation. however, continued efforts and advocacy are needed to meet the needs of tanzanians living with spinal cord injury. keywords: social participation; manual wheelchair; spinal cord injury; peer training; accessibility; social support; advocacy. introduction the world health organization (who) reported that 10% of people with disabilities (approximately 112 million people worldwide), need a wheelchair (wc) to enable mobility and social participation (burrola-mendez et al. 2018). social participation is a multidimensional concept with various complementary definitions (fudge schormans 2014). the who describes social participation as a positive outcome and social determinant of health, considered both as a means for and as a goal of health equity (world health organization 2008). others have added dimensions such as positive social interactions and receiving or contributing resources in society (mars et al. 2008). fundamentally, social participation has been defined as ‘a person’s involvement in activities that provide interaction with others in society or the community’ (levasseur et al. 2010:2141–2149). amongst people with spinal cord injuries (scis) who use wcs, social participation is often restricted because of environmental barriers (e.g. built environment), access to assistive technologies and services (e.g. wcs and wc skills training) and reduced opportunities (e.g. vocation) (tsai et al. 2017). social participation restrictions for people with disabilities are exacerbated in less-resourced setting (fudge schormans 2014). whilst it is recommended that wc service provision in less-resourced settings follows an eight-step process (i.e. referral, assessment, prescription, funding and ordering, product preparation, fitting, user training and a stage of maintenance, repairs, and follow-up), approximately 96 million people do not own a wc or their wc does not meet their needs (smith, sakakibara & miller 2016; toro, eke & pearlman 2016). this is especially true amongst those living in less-resourced settings, therefore undermining their right to personal mobility (burrola-mendez et al. 2018). given the quality and fit of a mobility device plays an important role in successful social participation for people who have trouble walking, there is a critical need that people with scis have access to reliable and well-fit wcs and that they receive adequate training for safe and effective use (magasi et al. 2018; tsai et al. 2017). furthermore, despite governmental and global attempts to meet the assistive technology service provision needs of individuals with disabilities, these individuals face multiple barriers restricting or even preventing access to basic healthcare and rehabilitation services (world health organization 2015). in less-resourced settings such as in tanzania, the common barriers restricting health service provision for individuals with physical disabilities (including people with scis who use wcs) are lack of education, discrimination, poverty, minimal access to resources and employment, maladapted or lack of assistive technology and architectural and social barriers (tijm, cornielje & edusei kwaku 2011). as a result, individuals in less-resourced settings commonly experience multiple unmet needs related to access to home and community-based services and restricted social participation (e.g. reduced mobility, access to health services, occupational engagement, education and other community activities). for example, in ghana, the needs of people with physical disabilities were reported to be economic empowerment, counselling centres, affordable and quality rehabilitation, equal opportunities, education, accident prevention and shelters (tijm et al. 2011). according to the four domains of quality of life described by the who, individuals with scis face additional barriers to social participation, including physical health (e.g. pain, secondary conditions, dependance on medical aids), psychological (e.g. depressive symptomatology, negative feelings), social relationships (e.g. lack of social integration) and environment (e.g. physical safety and security, transport, home environment, health and social care and opportunities for leisure) (barker et al. 2009; kennedy et al. 2010; world health organization 2020). whilst provision of wcs and other assistive technologies may help to overcome some of the barriers, wc provision alone does not address all critical aspects of wc service provision, nor will it ensure meaningful engagement in occupational and social activities or quality of life, especially in less-resourced settings (norris 2017). to help bridge this gap, a nonprofit organisation, motivation (https://www.motivation.org.uk), has developed peer-support programmes and targeted skills training programmes to address the needs of individuals with scis and other disabilities. the main goal of peer training is for wc users (i.e. peer trainers) to provide other wc users with relevant knowledge and skills (norris 2017) in an effort to improve independence, quality of life, access to services and occupational engagement in less-resourced settings (norris 2017). the motivation peer training (mpt) programme included three core elements including improving wc mobility skills (e.g. pushing over rough ground), increasing knowledge on health issues and well-being (e.g. understanding the main causes of disability) and understanding and advocating for their rights. previous research also suggests that mpt can reduce the feeling of social isolation and improve perspective on ability to access recreational activities (rushton et al. 2011). therefore, in a search for equal opportunities, inclusion, respect of human rights, vital information on disability rights and advocacy, support mechanisms may be provided by motivation for wc users in less-resourced settings (norris 2017). to enhance reach to more people in need of quality training across less-resourced settings, the organisation has implemented a standardised approach to training, which has reached more than 11 500 wc users in 22 countries to date (norris 2017). peer-led approaches have been reported as a useful method for providing wc training in less-resourced settings (best et al. 2018; norris 2017) and appear to be quite influential for people with scis (kirby 2017). in fact, local researchers in nairobi, kenya and manila, philippines interviewed 48 wc users, with even distribution amongst those who had and had not received peer-led training when they received their wc (williams et al. 2017). qualitative findings revealed four fundamental themes regarding the implementation of wc services, including physical environmental barriers, the need for multiple wcs to improve access, perceived social stigma and the importance of peer support (williams et al. 2017). it was shown that peer support networks provided shared life experiences, reduced feelings of social isolation and were perceived as an important source of knowledge, skill acquisition (e.g. related to wc use and maintenance, employment and income generation), developing a sense of belonging, emotional support and well-being (norris 2017; standal & jespersen 2008; williams et al. 2017). other studies added that a peer-to-peer approach induced positive behaviour changes, as peers are thought to be more credible than able-bodied people when it comes to demonstrating manual wc (mwc) techniques (rushton et al. 2011). in fact, self-efficacy and self-esteem related to mwc use, community participation and mobility within living environments increased after peer support (best et al. 2016; sakakibara et al. 2013, 2014). in high-resourced settings, peer-led mwc training has been shown to be feasible and effective for improving mwc skills capacity, performance and satisfaction amongst adults and older adults (best et al. 2018). without follow-up services or proper formal wc training in less-resourced settings, mpt may be a key strategy to increase wc service efficiencies (williams et al. 2017). however, descriptive data regarding the implementation of wc services in less-resourced settings and the perceptions of wc users about whether those services are meeting their needs remains largely absent (smith et al. 2016). the purpose of this study was to explore social participation (including barriers and facilitators) of individuals with scis using wcs in rural tanzania after completion of the mpt and entrepreneurial skills training (est) programmes. understanding perspectives of individuals with scis who use wcs regarding accessibility and community inclusion may inform refinements to the mpt and est programmes, including approaches to peer mentorship in a less-resourced settings. more importantly, it will show the current needs of people with scis who use wcs, which could inform policy changes needed to enhance social participation. method motivation, peer training and entrepreneurial skills training before this study started, motivation and moshi cooperative university provided mpt (delivered by peer trainers who use mwc) and est (delivered by trainers from the moshi cooperative university, tanzania), followed by provision of assets to start a small business (e.g. chicken coop, small shop). all motivation staff were previously trained to deliver the mpt programme. firstly, the mpt home visits consisted of 16 one-hour sessions of peer-led wc training in the participants’ homes. peers covered various topics from the mpt training package, including disability awareness (e.g. knowledge on scis and other disabilities, rights and advocacy), self-care and health (e.g. skin, bladder and bowel care and sexuality) and mobility (e.g. wc skills, transfers and sports). the package was created to supplement the support and medical services that individuals with disabilities were already receiving. it was revised in 2016, based on feedback from trainers and trainees. since then, it has expanded to include additional wc skills and sessions on hiv, aids and appropriate wcs (norris 2017:350). secondly, est consisted of a three day course, which included sessions on disability and economic development, introduction to entrepreneurship and setting up savings and support groups. design a phenomenological qualitative design was used to explore all dimensions of social participation as perceived by the participants. the photovoice method was used to explore social participation through lived experiences, current social inclusion, occupational engagement and access to home and community-based services. photovoice, originally developed to empower marginalised groups (wang & burris 1997), is a participatory community-based approach allowing marginalised groups to take and present photos of issues and concerns in their daily lives and discuss them collectively with a group of individuals with shared life experiences in focus groups and during an exhibition to promote awareness and change. photographs allow people to present their personal perspectives in their own voices, in a position of advocacy that could influence policy, decision makers and the way social concerns are understood and addressed (liebenberg 2018; tijm et al. 2011). in fact, it was recommended that photovoice be considered more often to capture perspectives about living with physical disabilities in rural communities in less-resourced settings (dassah, aldersey & norman 2017). conducting photovoice in a rural, less-resourced setting may increase our knowledge and understanding of the challenges individuals with physical disabilities may be facing (dassah et al. 2017). photovoice has also been described as particularly efficient when sharing findings about person–environment interaction in a more compelling manner than narrative data from interviews and focus groups (catalani & minkler 2010). participants and recruitment all wc users with scis who previously completed 1 – 3 mpt home visits and the est in tanzania were invited to participate in this study. a convenience sample was recruited by the research coordinator in tanzania, including those who met the inclusion criteria: 18 years of age or older, diagnosed with a sci and using a mwc. data collection within 6 – 12 months after the completion of the mpt and est programmes, participants completed a sociodemographic questionnaire and a two hour workshop in swahili (the local language) to prepare them for the study (education about photovoice technique, participation and empowerment). more specifically, they received a lesson in basic photography and were introduced to photovoice (i.e. the process of taking pictures and writing small captions to help capture the meaning of the image) (palibroda et al. 2009). cameras were provided to participants by motivation for the purposes of the research study. participants were also trained in ethics, privacy, safety and photo selection (evans-agnew & rosemberg 2016). for example, they discussed ethical issues and the use of digital cameras (e.g. respect and privacy, safety of participants and responsibility) (wang & redwood-jones 2001). the training focused on individual empowerment by including an ‘i can do it’ attitude affirmation, with the aim of highlighting the capabilities of the participants. to explore their social participation in their community, participants were instructed to take meaningful photographs of their everyday activities (e.g. people, places or things) over a period of four weeks (photos were taken between june 2019 and september 2019). afterwards, participants selected 34 pictures that best illustrated their experiences in the community and portrayed how they felt facilitated or inhibited in their chosen social participations and occupation engagements. to reach a deeper understanding of the selected pictures, the photo technique was used to consider participants’ realities through their own eyes and personal perspectives. this technique was designed to facilitate discussion of selected photographs through five standardised key questions: describe your photo. what is happening in your picture? why did you take a picture of this? what does this picture tell us about your life? how can this picture provide opportunities for us to improve life? (wang et al. 2004) participants then contextualised their photographs by telling stories about what the picture means to them and how it reflects their personal or community strengths and issues. indeed, the voice acronym (i.e. voicing our individual and collective experience) was used to explore important issues and to remind participants to think not only about their own life conditions but also about shared life events and conditions that could result in social change (liebenberg 2018). all staff were trained to facilitate the photovoice workshops. data analysis sociodemographic information and qualitative data (i.e. photo technique answers for each selected photograph) were collected and translated from swahili into english. thematic analyses of the photos and captions using a mixed deductive–inductive approach were conducted by annabelle de serres-lafontaine. validation of codes by the research team was conducted midway and at the end of the analyses process. firstly, data were coded deductively according to the international classification of functioning, disability and health (icf) (world health organization 2021). organisation and conceptualisation within the icf comprise two parts, such that the first part contains components relating to functioning and disability (i.e. ‘body functions and structures’ and ‘activities and participation’) and the second part contains components related to contextual factors (environmental and personal factors). these components are denoted by prefixes in each code: ‘b’ for body functions; ‘s’ for body structures; ‘d’ for activities and participation; and ‘e’ for environmental factors (world health organization 2007). after initial themes were explored, an inductive approach was used to explore emergent themes. ethical considerations ethical approval for this study was obtained from the comité d’éthique de la recherche sectoriel en réadaptation et intégration sociale, ciusss de la capitale-nationale (#2020-1810, ris_ jusqu’au). informed consent forms were translated from english to swahili by a research coordination in tanzania and signed. written consent was also obtained from any people who were included in the photos (with faces blurred to ensure privacy). results ten participants ranged in age from 30 to 45 years; five were female and six were married. all had received mpt and est from motivation and all spoke swahili as their first language. two interrelated themes emerged from the data analyses, including: (1) ‘influencing factors’, which revealed participants’ community integration was influenced by their activities and participation, as well as personal and environmental factors; and (2) ‘empowerment’, which explained participants’ needs of advocacy and awareness and their hopes for future changes and a meaningful life. the themes are presented with an inductive term, followed by the associated icf labels and corresponding codes in parenthesis. in addition, quotes from the photo technique and some of the participants’ shared photographs identified with the participants’ number (in brackets) were used to illustrate the themes. theme 1: ‘influencing factors’ activities and participation (d: activities and participation). livelihoods and activities of daily living were discussed in this subtheme. some participants mentioned different livelihoods (d840–d859: work and employment) that they were able to do, such as having an accessible chicken coop or repairing motorcycles (figure 1). those seemed to be ‘one of the many ways for generating income for the wheelchair users’ (participant 10, male, sci). however, other participants mentioned that the lack of accessibility of some places limits their livelihoods opportunities. for example, one said: ‘if the (marketplace’s accessibility) was improved, i could do my own business as well, in addition to buying things there’ (participant 4, female, sci). as for one of their main activities of daily living (d5300: regulating urination), in terms of their self-care related to sci, participants mentioned they have access to a doctor who prescribes them a catheter, but they face multiple challenges in accessing urinary continence management products (ucmps) and information on urinary contingency management. also, considering that ‘the hygiene and cleanliness are not appropriate in the health facilities’ (participant 1, female, sci), the sterility of catheters and ucmps was questionable. figure 1: engaging in accessible livelihood: (a) repairing a motorcycle; (b) having a chicken coop; (c) building a chicken coop. personal factors (body functions: b) participants’ self-efficacy and self-esteem were invoked in this subtheme. indeed, they expressed the importance of a good sense of self-efficacy, that individuals with disabilities should be active and believe in their own capacities. for instance, one participant showed a picture of himself building a chicken coop and mentioned that ‘every wheelchair user should be able to see their own abilities’ (participant 10, male, sci). as for the sense of self-esteem, one participant expressed that it is ‘one of the many challenges people with disabilities face’ (participant 10, male, sci). he showed himself at his wedding ceremony and expressed that people with incapacities can also get married and feel confident in their own skin (figure 2). he expressed, ‘trust your ability in building your own self-esteem’ (participant 10, male, sci). figure 2: getting married and feeling confident. environmental factors (environmental factors: e). participants described aspects of their physical environment (i.e. assistive technologies, transportation and access to places and facilities), as well as their social support. some participants mentioned having assistive technologies (e1201: assistive products and technology for personal indoor and outdoor mobility and transportation) that were not adapted and missing certain parts (figure 3). one said: ‘the wheelchair is not appropriate. there is no footrest, it is bigger than needed and the tire went out’ (participant 8, male, sci). moreover, a lot of participants reported obstacles in the urban and rural environment (e160: products and technology of land development), which limited their ability to get around. in fact, they put emphasis on how bad the roads are in their village: they described them as rough, uneven and rocky, with steep slopes and no sidewalks (figure 4). this interfered with or even prevented independent transportation with their wc and thus hindered their access to basic needs (e.g. water) and infrastructures. in addition, it made it difficult for them to propel their wc on the rough roads and move safely and easily. one participant expressed, ‘there is no pedestrian pathway in our community. the [road] is not friendly to the people with disabilities in our community’ (participant 5, female, sci). another showed himself on a steep hill and explained, ‘the picture is showing how steep the incline is – a wheelchair user cannot move independently. i need to be assisted’ (participant 8, male, sci). figure 3: receiving maladapted assistive technologies. figure 4: moving on rocky roads and steep inclines: (a) moving on rocky and uneven roads; (b) moving on steep inclines to access the community; (c) needing human help on steep inclines. furthermore, participants identified barriers accessing transportation services (d470: using transportation), whether a bus, a motorcycle or a car (figure 5). as one participant boarding a bus mentioned, ‘the doors of public transport vehicles are not easy to go through if you have a disability’ (participant 5, female, sci). not only it is difficult to use public transportation, but it also takes more space and generates more expenses, as another participant explained: ‘when boarding the bigger bus, i am using two seats to transfer my wheelchair and paying for both’ (participant 6, male, sci). given that ‘the availability of public transport is very rare’ (participant 3, male, sci), some participants highlighted that they sometimes needed to use a motorcycle, which they found dangerous, difficult to access and to stay in balance, and not very useful because they could not carry their wc. figure 5: transferring from the wheelchair to transportation inclines: (a) needing human help to get onto a motorcycle; (b) needing human help getting in a car. participants highlighted that most places and facilities (e150: design, construction and building products and technology of buildings for public use) are inaccessible to individuals with disabilities for various reasons such as the presence of stairs, steps, narrow doors and uneven entrances and the absence of ramps (figure 6). those barriers limited or even prevented them from moving around independently and accessing the entrance and upper floors of various buildings. as a result, these obstacles impeded participants’ access to services and social participation in different daily activities, such as grocery shopping and selling in markets, receiving basic pharmaceutical needs and having confidential appointments in medical clinics, going to governmental offices and school as well as going to church. for example, participants mentioned, ‘markets are not accessible. the seller is asking me what i want and i’m staying far from her’ (participant 4, female, sci). a participant also presented a picture of the school and expressed: ‘[t]he picture is showing an inaccessible classroom with steps and a narrow door. the classroom does not have ramps so a student with a disability cannot have access to the school.’ (participant 8, male, sci) figure 6: facing accessibility issues and depending on others’ help to overcome the: (a) uneven entrance hindering access to a public bathroom; (b) needing human help accessing church because of stairs at the entrance. participants also mentioned that even home environments (e155: design, construction and building products and technology of buildings for private use) were ‘[…] not friendly for wheelchair users’ (participant 3, male, sci). in fact, similar barriers as those previously mentioned were described when accessing private houses or even their own residences, such as stairs or the absence of ramps. one participant talked about the challenges he was facing whilst visiting his relatives and how it decreased his independence: ‘my relatives are carrying me out after the visit’ (participant 3, male, sci). another mentioned the presence of stairs when he explained ‘i’m waiting for someone to take me downstairs. my house is not accessible’ (participant 2, male, sci). in addition, a participant mentioned that the bathrooms are inappropriate: ‘not only are they inaccessible but the toilet is also narrow and without grab bars’; he added that it ‘(…) does not have a cover and the edges are sharp’ (participant 8, male, sci). which can be dangerous. regarding participants’ social support (e3: support and relationships), they all expressed that they needed human assistance to facilitate their social participation, given the multiple barriers in their physical environment (figure 6). for instance, wc users needed help from one or more individuals to carry heavy objects (e.g. big bottles of water) for their basic needs or move about on the rocky and uneven roads. one person explained how ‘the church premises are not accessible. people are carrying me to the church, [and later i am] getting down the stairs from the church alone’ (participant 6, male, sci). however, participants were not always accompanied by relatives or citizens, so they often had to transfer out of their wc to climb up and down the stairs on their own or wait for someone to come by: ‘i am waiting for assistance to take me to the pharmacy’ (participant 6, male, sci). also, someone added that she felt very vulnerable and dependent on others because of her disability: ‘the environment is inaccessible in inhabited areas: i am getting out of my wheelchair to crawl to the other side of the hill to seek help and access the community.’ (participant 5, female, sci) finally, some participants expressed communication difficulties during transfers affecting themselves and helpers: ‘the issue of communication when you are carrying the person with a sci is important, you have to communicate properly’ (participant 2 male, sci). theme 2: ‘empowerment’ advocacy and awareness participants were unanimous in voicing their needs and advocating for equal rights for all (d940: human rights; d950: political life and citizenship; e5 services, systems and policies). they emphasised that the pictures they took were for an educational purpose and might help the entire community understand disabilities and consider individuals with incapacities as whole and complete individuals, as well as raise their awareness about the issues they are facing daily. when asked about the reason they took their pictures, some participants responded, ‘to educate the community about inclusiveness. the community is not conscious about disability issues’ (participant 5, female, sci and participant 8, female, sci). another person said they took their pictures ‘to express the challenges people with disabilities are facing’ (participant 7, female, sci). others focused on specific actors in the community (i.e. public transport providers, religious authorities, landlords, education departments, local governments and officials) for which they advocated for the accessibility of the services they provide to the community. indeed, participants brought awareness on the importance of having accessible infrastructures and vehicles as well as renovating nonaccessible ones to minimise social participation barriers and optimise accessibility to services. as one person emphasised: ‘[a]ll human beings have equal rights. if we advocate for changes regarding accessibility issues, the community will be changed. we have to increase the level of independence of people with disabilities […].’ (participant 9, female, sci) for instance, they mentioned that building accessible bridges, sidewalks, pathways, roads, ramps and wider doors would be beneficial. some participants added that: ‘[t]he public transport provider should consider (people with disabilities) and adapt cars to be accessible. the community should have cars instead of motorcycles as public transportation options so there would be less accidents.’ (participant 1, female, sci and participant 5, female, sci) however, another participant explained that when building something new, the government does not prioritise accessibility for all even though they should consider and provide for the needs of the entire population, including individuals with disabilities, when he stated: ‘[i]n my community, they are not giving priority to people with disabilities’ choices. when we are constructing a building in our community, we have to make sure it is accessible. we are supposed to build friendly and accessible environments.’ (participant 9, female, sci) others who did not have accessible residences added that their landlords were not conscious about accessibility issues and landlords were not willing to pay for modifications (e.g. installation of ramps). therefore, to make their community evolve in a positive way, participants advocated for being included in decision-making when building new infrastructure, ‘i am asking the government to build the infrastructure and work with the community. once we are constructing anything, we have to take ramps into consideration and accessibility issues’ (participant 5, female, sci and participant 9, female, sci). furthermore, with a more accessible environment comes better access to services and meaningful occupations. for instance, one participant expressed: ‘[w]e need to express to the officials how important it is for the markets to be accessible. i want to go to the market and choose for myself what to buy, and i want to tell the community i have the right to do so.’ (participant 4, female, sci) participants raised awareness about ‘the challenges with livelihoods that people with disabilities are facing in securing basic needs’ (participant 3, male, sci) and ‘how important it is to help people with any special needs in accessing livelihoods’ (participant 3, male, sci). they wanted the community to be aware of the unavailability of ucmps, the barriers to getting water, their desire to have more confidentiality when they speak to the medical staff, the services that are only available on upper floors, the inaccessible toilets either in public places or private houses and their obligation to pay for two seats on the bus, amongst other things that were all influencing factors for their social participation in the community. hope for the future the wc users who experienced help from others felt that they were able to engage in more activities in their daily lives. moreover, participants also perceived that meeting people who were curious about their disability or their wc provided them with an opportunity to educate others about their reality. for instance, one participant talked about sci as part of the community awareness outreach programme at the radio station. moreover, a participant emphasised that ‘[…] people with disabilities […] should not be losing hope of having an enjoyable life’ (participant 10, male, sci), as he was still able to have a fulfilling and happy life with his spouse, who shared his hope for future changes in the community. indeed, after the participant sought and requested independent access to the church, a pastor proceeded with the construction of a ramp at the entrance (figure 7). this participant added that this change should motivate similar initiatives from church administration or the community at large. figure 7: building a ramp at the church’s entrance: (a) before and (b) after. discussion a variety of factors such as economic, social and personal circumstances (e.g. having a physical disability, living in a remote area) influenced perceived equality and fair access to resources. therefore, the experiences of social participation for individuals with scis who used wcs in rural tanzania varied according to personal circumstances. overall, accessibility challenges and advocacy for needs and rights were the predominant issues raised by participants. participants described limited opportunities to contribute meaningfully to the community and for social interaction and perceived restricted access to home-based and community-based services (i.e. important factors of social participation) (best et al. 2022; mars et al. 2008:1298–1308). accessibility issues participants in this study revealed multiple environmental barriers to mobility, community participation and securing basic needs, including inaccessible infrastructures (e.g. school, pharmacy, house), rough roads and limited transportation services (barclay et al. 2016). in studies involving individuals with scis in less-resourced settings, similar barriers to social participation and independence were highlighted and shown to increase risks of poverty, social isolation, mental health issues and unemployment (löfvenmark et al. 2016; maclachlan 2012). the mpt programme facilitated some participants to better contribute to or receive resources from their community, which enhanced their social participation (mars et al. 2008:1298–1308). for example, topics during mpt (i.e. self-care and health, mobility) enhanced participants’ knowledge about their condition and wc skills, specifically helping them to better target their health service needs. furthermore, est gave some of the participants the skills and motivation to start a livelihood (e.g. chicken coop). however, whilst a few participants were able to overcome the obstacles (e.g. attending church, seeing a doctor, building a chicken coop), most of them experienced continued inaccessibility that inhibited meaningful occupations (e.g. buying and selling at the local market, functioning independently in their own home, entering a car), confirming the need to move towards an accessible community to enhance well-being and inclusion (löfvenmark et al. 2016). when discussing social participation in their community, participants described frequent feelings of vulnerability because they depended on others to access infrastructures and to move around. in fact, previous research supports that many individuals with disabilities depend on others to help with mobility and transfers, due to physical dependence and poor social integration, which can decrease overall quality of life (van der woude et al. 2013). moreover, restricted mobility and inadequate wc fitting and seating are associated with various health issues (e.g. pressure injuries, falls, overuse or repetitive strain injuries, postural abnormalities, restricted breathing and a limited range of motion) (sprigle 2014). these environmental barriers constitute an important matter considering that in tanzania, amongst other issues raised in less-resourced environments, there are already unequal education opportunities for children with special needs (unicef), lack of accessible, hygienic and adequate health services (swere 2016) and lack of access to clean drinking water, compelling most residents to rely on different sources of water at a distance from home (smiley 2013). however, as a result of the various environmental barriers being presented to government, policies now state that all new buildings should be made accessible. nevertheless, there are currently no laws or government funds in place to reinforce the policies to ensure buildings are accessible (norris 2017). advocating for needs and equal rights through their photographs, participants advocated for their needs and raised awareness about sci and disability issues to minimise the judgements and social stigma associated with disability, which is a worldwide issue (barclay et al. 2016). indeed, although their rights are protected in national law and legislation, people with disabilities are less likely to be included in political activities, leadership roles, education, gainful employment or access to financial resources and support networks (e.g. saving cooperatives) (tijm et al. 2011; virendrakumar et al. 2018). these unequal opportunities can further exacerbate negative psychological impact, given that 20% – 30% of people with sci show clinically significant symptoms of depression that are substantially higher than the general population (norris 2017). to address this inequity, participants expressed the need to be included in governmental decision-making when building new infrastructures or establishing new policies, to ensure inclusion and to educate the community. although the session on disability awareness during mpt allowed some participants to educate others through meaningful and positive interactions, which may have enhanced their social participation (mars et al. 2008), continued efforts to raise awareness on disabilities and to overcome accessibility issues are needed to further enhance attainment of community integration and to respect their rights (löfvenmark et al. 2016). helping the entire community understand the reality of living with a disability may be the genesis of promising changes, enabling equal opportunities, positive social attitudes, greater independence and social participation amongst participants (löfvenmark et al. 2016), thus a better quality of life (barker et al. 2009). indeed, studies show that empowering individuals with disabilities to better advocate for their rights (e.g. to employment and education) and to be included in their communities could improve confidence in their abilities to access various occupations, higher education and employment when given the right knowledge and skills for independent living (norris 2017). as some participants said following the peer training, it is possible for people with disabilities such as themselves to stay active, have good self-esteem, generate income and most of all, live a fulfilling life. motivation is even working on integrating government advocacy (e.g. lobbying the ministry of health for the course to be included in health institutions and including it in the school of nursing syllabus) with programme-planning of peer-training in tanzania. this could promote institutional change and improve government practices, raise awareness on disabilities and reduce costs (norris 2017). after all, to ensure the application of human rights for all, considering that disability is partly caused by social conditions, the community has a collective responsibility to compensate for environmental barriers previously stated and provide for full participation of individuals with disabilities in all areas of social life (solli & barbosa da silva 2012). the international classification of functioning, disability and health as an organising framework this article provides some insight into the application of the icf to explore social participation and inclusion of individuals with scis in rural tanzania. in fact, some subthemes originating from the thematic analysis (i.e. activities and participation, environmental factors and advocacy and awareness) were explicitly related to icf domains and identified by participants as elements that daily influence their community engagement (world health organization 2021). however, although personal factors in the icf did include psychological components such as self-esteem and self-efficacy (geyh et al. 2012), the conceptual framework did not fully capture the depth of information required to understand the affective components of the person. indeed, some subthemes (i.e. personal factors, including participants’ self-esteem and self-efficacy, as well as hope for the future) were not explicitly portrayed and described in the icf, yet these concepts influence individual daily occupational engagement (e.g. leisure, livelihoods), relationships, choices and desires (e.g. pursuing higher education) (ravenek et al. 2013). reflections on the motivation programme: recommendations for the future based on participants’ experiences and participation after mpt, recommendations may be made for future practice. the mpt peer-training courses focused largely on wc skills and using the device (e.g. wc transfers, basic wc mobility, wc maintenance, assistance and assistive devices). the mpt programme may be enhanced by following the who 8-step service provision guidelines (norris 2017). moreover, mpt could expand their focus to target the development of knowledge and skills to better communicate and advocate for their personal needs when receiving mobility assistance. in this way, the self-management of health needs may be promoted (e.g. postural needs, facilitate safer mobility and transfers), which would ultimately lead to greater independence, social participation and livelihoods (norris 2017). furthermore, to better empower individuals with sci, mpt sessions could facilitate valuable role-modelling, provide necessary tools (e.g. coping and action planning tools) and resources for social support and modify practices according to disability rights and advocacy to facilitate personal change and educate others (löfvenmark et al. 2016). at an institutional level, peer trainers could even run lobbying activities (e.g. include people with disabilities in sport events, raise awareness on the international day of disability). in line with the future, participants highlighted the importance of building their own self-esteem and self-efficacy regardless of others’ judgements and remaining optimistic about living a happy life in an inclusive community, which can all be strengthened through peer training. in fact, some studies highlight that personal factors and goals should be seen as central in the icf (solli & barbosa da silva 2012). similarly, other studies explored the need to encompass a biopsychosocial perspective of people’s activities and participation within their social systems (e.g. individual, family, community). such a holistic approach could facilitate an understanding of how biological, physical, psychological and social factors can influence one another, contribute to functioning and well-being and be modulated by the environment (e.g. others’ support and attitudes, services and policies) (ravenek et al. 2013; solli & barbosa da silva 2012:277–294). given that peer-training can improve wc skills, confidence, self-esteem and self-efficacy and facilitate achievement of individually set goals and aspirations (best et al. 2016; worobey et al. 2016), this supports the need to integrate affective components of the person into assistive technology interventions and peer training programmes such as mpt. limitations as a result of the small sample size and the exploratory nature of photovoice methodology in a less-resourced setting, the findings of this study may not be generalisable to all people with scis who use wcs. in addition, details about the level of sci were not obtained. therefore, it was not possible to comment about level of functioning or mobility limitations on social participation. the completion of the motivation programme and the involvement of the organisation in delivering the photovoice preparatory workshop may also have imposed some bias on the photos the participants took and the photos they chose to discuss, which remains subjective and therefore may lack replicability. however, although these results are specific to participants in rural tanzania, similar challenges that people with disabilities face daily have been identified in other less-resourced settings, suggesting some transferability of the results in similar contexts. the study materials were prepared in english and informally translated to swahili. given there was no standardised translation method followed (e.g. forward-backward translations), it is possible that cultural nuances were not adequately considered. however, the questions in the photo methods are basic and not related to any geographical or cultural nuances. finally, the ability of all participants to use a camera may differ, even though they received training beforehand. this may have affected the quality of the photographs that participants were able to take and the consequent data collected. conclusion this study provided evidence about the social participation and occupational engagement of people with scis using mwcs in rural tanzania, underlining the importance of accessible environments, access to services, social support, psychological well-being and inclusion of individuals with disabilities in the community as equals. motivation peer training and est had meaningful impacts on the lives of the participants, helping them improve their mwc skills, engage in meaningful livelihoods contributing to the community and to educate others through positive social interactions. however, remaining barriers emphasised the need for continued efforts to improve accessibility of infrastructure and community-based services, to empower people with disabilities, to enhance advocacy and to create awareness about daily challenges, which may be targeted through peer-training programmes. findings from this study suggest target areas to enhance social participation and promote community integration of individuals with disabilities in less-resourced settings. future research may consider refining peer-training approaches and targeting policymakers. acknowledgements the authors would like to acknowledge olga shevchenko, who led the focus groups as part of her master’s in international development at the university of reading, united kingdom and mary marandu, who coordinated the project and guided the photovoice process through her role as project manager with motivation, africa (tanzania). competing interests lucy norris was employed by motivation, united kingdom during conceptualisation of the project, but she was not involved in data interpretation. the remaining authors declare that they have no conflicts of interest concerning this article. authors’ contribution all authors made significant contributions to this article. k.l.b., l.n. and d.l. conceptualized the study. l.n. coordinated the project and oversaw staff training. a.d.s.-l. completed data analysis. k.l.b., c.s.b. supervised the article and d.l. and a.d.s.-l. wrote the first draft of the manuscript. iterations were reviewed and discussed between k.l.b., d.l. and c.s.b. l.n. contributed to editing and the final manuscript. all authors reviewed and approved the final manuscript. funding information salary support for k.b was provided by the quebec health research funds (frqs) junior 1 scholarship. data availability data sharing is not applicable to this article, as no new data were created or analysed in this study. disclaimer the views and 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kwame nkrumah university of science and technology, ghana 2department of community health, kwame nkrumah university of science and technology, ghana correspondence to: frances owusu-ansah postal address: department of behavioural sciences, kwame nkrumah university of science and technology, kumasi, ghana dates: received: 15 may 2012 accepted: 24 aug. 2012 published: 16 oct 2012 how to cite this article: owusu-ansah, f.e., agyei-baffour, p., edusei, a., 2012, ‘perceived control, academic performance and well-being of ghanaian college students with disability’, african journal of disability 1(1), art. #34, 6 pages. http://dx.doi.org/10.4102/ ajod.v1i1.34 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. perceived control, academic performance and well-being of ghanaian college students with disability in this original research... open access • abstract • introduction    • justification of the study    • significance of the study • method    • setting    • sample    • instruments and procedure • results • ethical clearance • discussion • conclusion • acknowledgments    • competing interests    • authors’ contributions • references abstract top ↑ background: empirical evidence abounds showing the impact of perceived control on subjective well-being in several spheres of functioning, including academic performance. at tertiary institutions, such as the kwame nkrumah university of science and technology, ghana, little is known about the needs of students with disabilities, as very few persons with disabilities attend institutions of higher learning. objectives: this study examined the relationship between perceptions of control and the academic and subjective well-being of students with disabilities. method: a total of 69 students with disabilities participated in this cross-sectional descriptive study. using trusted control and subjective well-being scales, data were subject to descriptive analyses. results: consistent with previous works, perceived control increased with increased subjective well-being, moderated by gender. in addition, forms of secondary control appeared to aid primary control in the tenacious pursuit of goals. however, neither perceived control nor self-esteem was predictive of academic performance. conclusion: limitations of sample size notwithstanding, the findings of the study can be considered provocative. implications for clinical utility in facilitating context-specific interventions for this marginalised group are discussed. replication with a larger sample size in other tertiary institutions is suggested for future work. introduction top ↑ empirical evidence that consistently shows that an individual’s sense of perceived control impacts on his or her psychological and physical well-being abounds. a greater sense of control over events affecting one’s life has been associated with positive effects in several spheres of life spanning academic achievement, attenuation of stress, self-concept, better coping skills and subjective well-being (george 2010; owusu-ansah 2009; ryan et al. 2003). likewise, a fatalistic perception that one’s life is controlled by external forces has been associated with negative outcomes (langdon & talbot 2006).subjective well-being is about being happy and satisfied with the way one lives one’s life. but what really makes people happy and/or satisfied? evidence suggests that in the pursuit of happiness people make choices that have maximising utility (kiefer 2008); choices that they believe will add value to their lives or make them happy although these may not necessarily reflect their ‘true’ preferences (kahneman & krueger 2006). in other words, people sometimes do what they have to do in order to do what they want to do. a personal sense of control is necessary to negotiate these, sometimes conflicting, motivations for choices. control can be perceived and exercised as primary or secondary. primary control aims to change the environment so that it fits with the individual’s needs and desires. it is assimilative and outwardly directed as the individual takes ‘whatever means’ necessary, direct or indirect, to persist in the pursuit of the desired goals. there are two forms of primary control: selective and compensatory. tenacious engagement of the environment through one’s own efforts is selective, whilst the use of secondary resources to change the environment to attain one’s goals is compensatory. secondary control, unlike primary, is accommodative and involves attempts to fit in with the environment. it does not directly seek to alter the environment. instead, it focuses on cognitive or motivational changes within the self. positive reappraisal is a form of secondary control as it attempts to make sense of or find some positive meaning in an otherwise difficult or negative situation. social comparison is another form of secondary control, whereby one compares the self with same or similar others (for example, persons of the same age, gender or condition) to enhance a perceived sense of control. likewise, control is sometimes attained by disengaging from prior goals or adjusting and rescaling values attached to unattainable goals. this form of secondary control refers to lowering aspirations. sometimes this is the best thing one can do to promote well-being and maintain some semblance of sanity in seemingly impossible situations (wrosch & lachman 2000). several studies have examined the effects of perceived control in the lives of persons with disabilities (pwds). many of these have shown that pwds, mostly children, exhibit greater externalised perceptions of control than children without disabilities, with negative effects on their academic performance (chapman & boerman 1979; firth, cunningham & skues 2007; roger & saklofske 1985) moreover, some findings suggest that perceived control is moderated by both disability and age. older persons with disabilities perceive themselves to have less control, especially primary control, than younger persons (kempen et al. 2005). studies that have examined the relation of perceived control to subjective well-being of pwds consistently show positive effects in pwds who perceive themselves as able to control meaningful elements in their environment (dunn 1996; furhrer 1994; kloomok & cosden 1994). although some studies have failed to confirm previous findings (savell 1991), others clearly suggest that how a person thinks about the self, relative to the environment, has important behavioural consequences and that there is greater subjective well-being in the lives of pwds who perceive themselves able to control meaningful elements in their environment (fisher & johnstion 1996). justification of the study many studies have looked at perceived control, and/or subjective well-being of pwds in relation to academic performance. however, most of these have focused on children (chapman & boerman 1979; firth et al. 2007; roger & saklofske 1985). the relationship of perceived control and subjective well-being to the academic performance of pwds who attend higher institutions of learning is less researched. more importantly, very little is known about the lives of tertiary students with disabilities within sub-saharan africa. yet evidence abounds to suggest that a perception of self as agentic (that is, a perception of self as capable to effect a desired outcome) has multiple positive effects (dunn 1996; kloomok & cosden 1994).therefore, the present study examined the relationship between perceived control and subjective well-being and the academic performance of pwds at the kwame nkrumah university of science and technology (knust) in kumasi, ghana. information from this study could inform the design of context-specific programmes aimed at enhancing the general well-being and academic performance of pwds at tertiary institutions such as knust. this is an aim consistent with the goals of the centre for disability and rehabilitation studies (cedres) housed on the knust campus and the first of its kind in the sub-region. since perceived control is important to advancement in all spheres of life, including subjective well-being, pwds who see themselves as agentic, and thus feel empowered, are more likely to be active participants of changes needed to improve their circumstances on the university campus. however, how they perceive themselves with reference to controlling meaningful life events must first be understood. more importantly, understanding pwds’ self-perceptions would facilitate a best-fit, context-specific and effective intervention for their academic, social and clinical needs. the study sought to answer the following specific questions: • do students with disabilities hold primary or secondary forms of perceived control? • are the specific types of perceived control differentially associated with academic performance and subjective well-being amongst students with disabilities? • do students with greater general perceived control have better academic grades and/or do they enjoy greater subjective well-being? the objective of the study was to determine the relationship between perceived control and academic performance and the subjective wellbeing of pwds at knust for the development of effective, context-specific interventions. consequently, the specific objectives were to: • determine the relationship between general perceived control and academic performance • determine the relationship between general perceived control and subjective well-being • inform the choice of clinical strategies and interventions for effective counselling • inform recommendations for advising students with disabilities at a tertiary institution such as knust. based on existing literature, a positive relationship between perceptions of control, academic performance and subjective well-being was expected. although no prediction about primary and secondary control perceptions was made, it is likely that, given environmental constraints, there would be more secondary control perceptions relative to primary control amongst students. significance of the study the significance of this study lies in the data that it provides about students with disabilities at knust. insights with regard to their self-perceptions can inform appropriate and context-specific assistive response from the university. method top ↑ setting knust is one of the leading tertiary institutions in ghana and the largest in the kumasi metropolis. it has close to 30 000 students attending varied graduate and undergraduate programmes. the university also houses cedres and a hospital that serves students, staff and their dependents, as well as the general public. knust is yet to become fully disability friendly as far as accessibility to the built environment, organised services for students with disabilities and data on students with disabilities are concerned. sample the study focused on students with disabilities at the knust campus in kumasi, ghana. participants were approached through their respective student representative bodies, such as the students’ representative council, the knust branch of the ghana society for physically disabled, and the office of the dean of students. with assistance from the office of the dean of students, a campus-wide count of students with disabilities was conducted in which students were asked to indicate whether they had any type of disability and, if applicable, to provide their contact information. students who responded were later contacted and their voluntary participation in the study was requested. although many students were self-identified as pwds, only those with visible impairments of high to moderate severity (such as mobility and visual impairment) appeared to respond favourably in the follow-up solicitation for participation in the study. instruments and procedure psychological instruments used for this cross-sectional descriptive study consisted of two scales that assessed perceived control and two subjective well-being scales. the former included the heckhausen control scales (heckhausen & schulz 1995) and rotter’s internal-external control scale (lefcourt 1983; rotter 1966;), whilst the latter involved diener’s satisfaction with life scale (diener 2000; diener et al. 1985) and a psychological well-being scale (owusu-ansah 2008). rosenberg’s self-esteem scale (crandal 1973; rosenberg 1965) was added to assess participants’ level of self-esteem. the heckhausen scale consists of 30 items rated on a seven-point scale and reflects the extent to which participants perceive themselves to be agentic as far as controlling meaningful things in their environment. rotter’s scale is a 23-item scale, excluding fillers. items reflecting internal locus of control receive a score of 0 (zero), whilst items that reflect an external locus of control are scored 1. scores between 0 and 11 reflect endorsement of items with an internal locus of control and scores between12 and 23 reflect endorsement of items with an external locus of control. higher scores therefore indicate a more externalised locus of control.diener’s scale includes five items rated on a seven-point scale, with higher scores indicating greater satisfaction with one’s life and an index of subjective well-being. the psychological well-being scale consists of 25 items, also rated on a seven-point scale, which provide a general appraisal of participants’ perception of well-being in several spheres of life. the rosenberg scale has nine items rated on a four-point scale, with higher scores reflecting a higher level of self-esteem. demographic data and students’ grade-point average or cumulative weighted average (cwa), which was used as the index for academic performance, were also obtained. all scales, structured as paper–pencil questionnaires, were put together in a single packet for administration to the participants after they had read, understood and signed a consent form, and all questions and/or concerns about the study were answered. participation was voluntary without any coercion. to ensure quality of the data collection procedure, research assistants were trained for consistency in the administration of questionnaires. visually impaired students were assisted in the completion of questionnaires by having research assistants read the questions to them and mark their choices. results top ↑ a total of 69 students with disabilities, from graduate and undergraduate study programmes, participated in the study. ages ranged from 19 to 54 years (mean = 25.4, sd = 8.6), with more male than female participants. physical disabilities of mobility predominated, followed by visual, auditory and speech disabilities, in this order. study programmes included english, physics, agricultural studies, nursing, actuarial science, industrial art and human biology. the cwa, which was used as an index of academic performance, ranged from 45.1 to 70.4 (mean = 49.6 and 55.2 for male and female students, respectively), with no significant difference between male and female participants (p < 0.41). the demographic characteristics of participants are presented in table 1. table 1: demographic characteristics of participants (n = 69). all measures evidenced desirable coefficient alphas, reflective of their internal consistency reliability (see table 2). measures of subjective well-being evidenced good construct validity, reflected in a significant positive correlation (r = 0.33, p < 0.001). the following findings were obtained with regard to the specific study questions: table 2: descriptive statistics and internal consistency reliabilities for control and well-being measures. • perceived control and well-being measures showed positive associations, as predicted, although not significant (r = 0.12 and r = 0.13, respectively). in other words, indications of well-being increased with increases in perceptions of control.• regressions of control measures and well-being measures, including self-esteem, on academic performance were not significantly predictive. students were not significantly differentiated by their level of perceived control, well-being or self-esteem as far as academic performance was concerned. although there was no significant difference in the perceptions of primary and secondary forms of control amongst students, gender made a difference. a t-test of participants’ average scores revealed that male and female students differed significantly in the perception of secondary control, specifically in the perception of lowering aspiration (p < 0.002) and social comparison (p < 0.03). female students significantly tended to engage in both types of control, more so than their male counterparts. that is, female students were more likely than male students to lower their aspirations and compare themselves to others. additional information from examination of the inter-construct relationships (that is, an examination of how the types of control used measured same or different aspects of control) showed interesting findings. a negative relationship between primary control and lowering aspiration not only showed a difference in the constructs but also suggested that those who engaged in tenacious pursuit of goals through perceptions of primary control were less likely to lower their life aspirations (r = –0.22, p < 0.05). instead, primary control perceptions were positively associated with social comparison (r = 0.22, p < 0.05) and positive reappraisal (r = 0.57, p < 0.01). finally, those who lowered aspirations to meet goals significantly tended to compare themselves with others (r = 0.23, p < 0.05). in other words, persons who believed in their ability to change their environment through their own efforts (primary control) were more likely to compare themselves with others like them (social comparison) and to find the ‘silver lining’ in even negative situations (positive reappraisal). further analysis of variance to explore the relationship between perceived control (that is, the rotter’s locus of control measure), self-esteem and disability type revealed no significant difference between type of disability, self-esteem (p < 0.12) and perception of control (p < 0.37). in other words, the type of disability students experienced was not significantly related to either their self-esteem or their perceived control. on rotter’s locus of control measure, all students were internally oriented and did not differ significantly from each other (see table 3). it appears that students with different disabilities were generally similar in the way they viewed themselves and how much control they believed they had in controlling meaningful happenings in their lives. therefore, whereas gender made a difference in the perception of some types of control (secondary control on the heckhausen control measures), type of disability did not. table 3: summary of internal and external locus of control scores by type of disability. it was noteworthy that many participants denied membership of the local association for students with disabilities (59.4% vs. 21.7% who acknowledged membership), whilst others did not answer this question at all (18.8%, 13). although the majority received a bursary for students with disabilities (62.3% vs. 21.7%), some did not answer this question (15.9%, 11). ethical clearance top ↑ ethical approval for the study was obtained from the committee for human research, publications and ethics at knust. discussion top ↑ in this study increases in perceived control were associated with increases in life satisfaction and well-being. put differently, students who perceived themselves to have greater control over meaningful happenings in their lives also reported greater levels of life satisfaction and well-being. this finding is consistent with previous studies that showed positive relationships between perceived control and well-being (dunn 1996; fisher & johnstion 1996; george 2010; grob et al. 1996; kloomok & cosden 1994; owusu-ansah 2008; 2009; pallant 2012; ryan et al. 2003). also consistent with earlier works (kempen et al. 2005; lang & heckhausen 2001), participants of this study, who were predominantly young, believed that important happenings in their lives were internally controlled, as evidenced by scores on the rotter scale. understandably, pwds who have managed to attend a tertiary institution such as knust despite the numerous challenges they face within the ghanaian educational system (danso, owusu-ansah & alorwu 2012), are likely to have a sense of accomplishment and a level of life satisfaction as a result. however, there was a greater dispersion in the level of perceived control experienced by those with mobility impairments relative to the other disabled groups, as evidenced by the deviation of their scores from the mean. it may be possible that the physically challenged felt more constrained and dissatisfied because of the physical inaccessibility of the knust campus. being visually aware of existing facilities and opportunities yet barred from full participation because of a lack of accessibility for the mobility impaired may be particularly frustrating. it was surprising to find that neither perceived control nor subjective well-being was predictive of academic performance given the positive associations between perceived control and academic performance found in some studies (diener & suh 2000; weist, wong & kreil 1998). in other words, while some earlier works have shown that greater perceived control and/or subjective well-being predicted academic performance, the findings of this study failed to confirm that. however, it is noteworthy that the literature in this area has presented mixed findings, which may be attributable to differences in study samples. as in the present study, some studies (e.g. stupnisky et al. 2007) have found that self-esteem, an index of well-being, was not predictive of grade-point average in first-year college students. however, unlike the present study, their sample was first-year college students without disabilities. also, comparative studies of controls and children with disabilities have reported negative associations with academic performance (chapman & boerman 1979; dunn 1996; firth et al. 2007; kloomok & cosden 1994; roger & saklofske 1985). that is, these studies did not observe positive and predictive associations between perceived control and academic performance. it is fair to say that unlike these studies, which report greater externalisation of control in children with disabilities, with adverse effects on their academic performance, participants in the present study were neither young children nor externally localised in their perceptions of control. therefore it is possible that the type and size of the sample in the present study may have contributed to the lack of significant and predictive associations between perceived control and academic performance. the finding of positive associations between positive reappraisal and social comparison with primary control in the present study, suggests that these forms of secondary control bolster tenacious pursuit of goals. in other words, in the persistent pursuit of life’s goals it helps to be able to see the brighter side of seemingly negative happenings and to consider one’s situation to be better than that of similar others. a positive reappraisal does not necessarily take away present challenges, but may give a new perspective and impetus to keep striving despite challenges and constraints. honing the skills for positive reappraisal in pwds might have therapeutic benefits, especially when the individual desires to control meaningful personal life events. likewise, it appears that being able to appreciate one’s circumstances by considering oneself to be in a better situation than similar others or those with a worse alternative can motivate one to continue in the pursuit of life goals. the findings of this study, although preliminary, suggest that a consideration of gender rather than type of disability might be important when counselling students with disabilities. understanding the potential cultural dynamics that may underlie why a female student with disability would be more likely to lower her life aspirations and engage in social comparison as a means of enhancing perceived control would inform the choice of therapeutic interventions and/or counselling style. conclusion top ↑ the findings of this study open interesting questions for further investigation with potential clinical utility, the limitations of the small sample size notwithstanding. given the small sample size and possible cultural perceptions of gender and disability that may have contributed to the results, the findings can be considered provocative rather than definitive. it is therefore recommended that the study be replicated with a larger sample size in other tertiary institutions, whether in ghana or outside ghana, and to include a control group for more informative and effective comparative analyses. since the observed correlations were generally in the expected direction, findings from a larger sample with a control group would be more informative and illuminating. more importantly, a better understanding of the way young adults with disabilities at tertiary institutions perceive themselves and how this relates to their academic achievement will have numerous clinical, social, and economic implications. acknowledgments top ↑ competing interests the author declares that she has no financial or personal relationship(s) which may have inappropriately influenced her in writing this paper. authors’ contributions f.e.o.a. was the project leader and responsible for design of study, data collection and preparation of the manuscript for publication. p.a.b. assisted with data analysis. a.e. assisted with edits and preparation of the manuscript. references top ↑ chapman, j.w. & boersma, f.j., 1979, ‘learning disabilities, locus of control, and mother attitudes’, journal of educational psychology 71(2), 250–258.crandal, r., 1973, ‘the measurement of self-esteem and related constructs’, in j.p. robinson & p.r. shaver (eds.), measures of social psychological attitudes, pp. 80–82edition, isr, ann arbor. danso, a.k., owusu-ansah, f.e. & alorwu, d., 2012, ‘designed to deter: barriers to facilities at second cycle institutions in ghana’, african journal of disability, 1(1) art. #2,9 pages. doi: http://dx.doi.org/10.4102/ajod.v1i1.2 diener, e., emmons, r.a., larsen, r.j. & griffin, s., 1985, ‘the satisfaction with life scale’, journal of personality assessment 49, 71–75. diener, e., 2000, 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well-being: implications for the institutionalized elderly’, therapeutic recreation journal 25(3), 44–59. stupnisky, r.h., renaud, r.d., perry, r.p., ruthig, j.c., haynes, t.l. & rodney, a.c., 2007, ‘comparing self-esteem and perceived control as predictors of first-year college students’ academic performance’, social psychology of education 10(3), 303–330. weist, d.j., wong, e.h. & kreil, d.a., 1998, ‘predictors of global self-worth and academic performance among regular education, learning disabled and continuation high school students’, adolescence 33, 1–10. wrosch, c., heckhausen, j. & lachman, m.e., 2000, ‘primary and secondary control strategies for managing health and financial stress across adulthood’, psychology and aging 15, 387–399. article information authors: anna wickenden1 stephanie nixon2,4 karen k. yoshida3,4 affiliations: 1institute of development studies, university of sussex, united kingdom2international centre for disability and rehabilitation, university of toronto, canada 3department of physical therapy and graduate department of rehabilitation science, university of toronto, canada 4dalla lana school of public health (social and behavioural sciences and health), university of toronto, canada correspondence to: anna wickenden postal address: 160-500 university avenue, toronto m5g 1v7, canada dates: received: 20 dec. 2012 accepted: 14 may 2013 published: 31 july 2013 how to cite this article: wickenden, a., nixon, s. & yoshida, k.k., 2013, ‘disabling sexualities: exploring the impact of the intersection of hiv, disability and gender on the sexualities of women in zambia’, african journal of disability 2(1), art. #50, 8 pages. http://dx.doi.org/10.4102/ ajod.v2i1.50 copyright notice: © 2013. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. disabling sexualities: exploring the impact of the intersection of hiv, disability and gender on the sexualities of women in zambia in this original research... open access • abstract • introduction • methods    • study setting and design    • data collection • analysis • results    • participants    • impact on and changes to intimacy    • disruption and renegotiation of gender roles and identity • discussion    • challenging stereotypes of asexuality    • implications for intimacy    • human immunodeficiency virus, gender and disability • limitations • conclusion • acknowledgements    • competing interests    • authors’ contributions • references abstract top ↑ background: women with a disability are often characterised as a homogenous social group consigned to a cultural stereotype with assumptions of dependence, asexuality and gender neutrality. furthermore, there is a void of research about the experience of people with disabilities following diagnosis with hiv. little is known about how hiv diagnosis intersects with disability and gender and how it shapes the experiences of intimacy and gender roles of those negotiating this intersection.objective: the objective of this study was to explore how hiv, disability and gender shape the perspectives of hiv-positive women with disabilities regarding intimacy and gender roles. methods: twelve women in lusaka, zambia were recruited for in-depth semi-structured interviews to explore their experiences of having a disability and living with hiv. interviews were conducted in english, bemba, nyanja and zambian sign language. descriptive and thematic analyses were conducted, followed by in-depth gender analyses of data relating to intimacy and gender roles. results: data analysis led to the identification of two main themes: the impact of hiv diagnosis on intimate relationships amongst the participants; and the disruption and renegotiation of gender roles. these findings demonstrate the loss of intimacy (often decided by the participants) and changes in women’s gender roles (infrequently decided by them). conclusions: the narrow approaches to sexuality and hiv that reinforce misconceptions and stereotypes need to change. in their place should be inclusive and disability and sex-positive approaches that are informed by the diverse realities of women’s lives. further research is needed to develop stronger evidence of the impact of hiv and disability on gender roles and sexuality. introduction top ↑ the idea that women with disabilities have any sexuality may be an uncomfortable fact for much of society. this is reinforced by a narrow conceptualisation of sexuality as the sex act itself and the lack of research into the extraneous factors that impact and shape diverse sexualities. several scholars have promoted thinking in terms of multiple sexualities and cautioned against oversimplifying and essentialising sexuality; yet the notion of a homogenous, unchanging sexuality continues to permeate much research and discourse (helle-velle 2004; mama 2007; oinas & arnfred 2009; tamale 2011).the fact that hiv can impact on the sexualities of women with disabilities can create an uncomfortable proposition. hiv is intensely political and commonly associated with risk and sexual deviance. to think that hiv may have an impact on women with disabilities challenges many of the tenets that are fundamental to societies’ imagination and construction of ‘the disabled.’ in 1992, disabled american activist and author anne finger argued that: ‘sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. it’s easier for us to talk about – and formulate strategies for changing – discrimination in employment, education and housing than to talk about our exclusion from sexuality and reproduction.’ since the beginning of the hiv epidemic, ikkaracan and jolly (2006) and edstrom (2010a, 2010b) argue, hiv and sexuality (particularly men having sex with men) have been intricately linked with the risk and vulnerability narratives that have accompanied the epidemic. edstrom (2010b), akwara, madise and hinde (2003) and caravano (1991) contend that the way in which sexuality is understood and juxtaposed with hiv has reflected the intensely political nature of the discourse around hiv. the link between sexuality and hiv has focused on negative constructions of sex and sexuality or ‘bad sex’ (jolly 2007; rubin 1984). the negative association between hiv and sexuality has led to denial, blame and stigma surrounding hiv. in contrast to the pairing of hiv and sexuality, disability and sexuality are issues that rarely come together in people’s minds (meekosha 2004). in this article, we view disability through a social-model lens (oliver 2004) informed by postcolonial critiques (grech 2010). common to all variants of the social model is the belief that ‘disability’ and ‘disablement’ are socio-political constructions. it is therefore the inhospitable physical and social environments combined with negative social attitudes that result in the systemic oppression, exclusion and discrimination of disabled people (lang 2001). the social model of disability facilitates the understanding of the process of the asexualising of disabled people, as described by bonnie (2004) ‘disabled adults have been infantilized, sterilised, prohibited from engaging in sexual activity and marriage, and excluded from social and leisure activities’. meekosha (2010:4) and thomson (1997) further explored the representation of the disabled as ‘asexual creatures, as freaks of nature, monstrous, the ‘other’ to the social norm’. disabled women are often assumed to have no sexuality at all. yet the image of disability may be intensified by gender, whereby women with disabilities may be viewed with intensified passivity and helplessness. the gendered experience of disability reveals patterns of difference of women which might be magnified following hiv diagnosis, as is often the case for non-disabled women (edstrom 2010b). hiv acts as a spotlight, exposing inequalities within and between countries and communities. the hiv epidemics are at their worst in regions where poverty and economic inequality is extensive and deep, and where gender inequality is pervasive. tallis (2002) and mahajan et al. (2008) argued that gender inequality is evident at all stages of the prevention-care continuum and can affect, amongst other things, the possibility of prevention, access to appropriate materials, information and resources, the quality of care received and the chances of survival. despite the emphasis on vulnerability in the hiv response, one of the world’s most ‘vulnerable’ populations – individuals with a disability – have until recently been almost entirely overlooked. groce (2005) provided a succinct and powerful account of the intersection between hiv and disability, outlining the risk factors for disability and hiv through the life cycle. she emphasised that many of the established risk factors for hiv (poverty, illiteracy, stigma and marginalisation) are heightened amongst people with disabilities. a wave of important work has since emerged, which has investigated dimensions of hiv prevention for people with disabilities (chireshe, rutondoki & ojwang 2010; eide et al. 2011; groce et al. 2013; rohleder et al. 2012; winningham et al. 2008). however, little is written about the hiv care, treatment and support needs of people with disabilities and who are hiv-positive, with most information currently residing in the form of reports developed by disabled people’s organisations as opposed to the peer-reviewed literature (disability hiv and aids trust [dhat] 2011; starz report 2009). the purpose of this article is to explore the experiences of hiv-positive disabled women in relation to issues of intimacy and gender roles. this analysis derives from the sepo study, which is a project conducted jointly by researchers and activists at the university of toronto and mcmaster university in canada, the university of kwazulu-natal in south africa and the disability hiv and aids trust (dhat), which is a southern african disabled people’s organisation (and has an office in zambia). the objective of the sepo study was to explore perceptions of stakeholders in zambia regarding issues of health equity for people with disabilities and who are hiv-positive. this article presents an analysis of the accounts of female participants with such issues. it explores their experiences related to intimacy and gender roles. methods top ↑ study setting and design this qualitative, interpretive study was conducted in lusaka, zambia. participants were women with disabilities and who are also hiv-positive. within this group, diversity was sought in terms of impairments such as physical, hearing, visual and intellectual. potential participants learned about the study through dissemination of recruitment information via posters and word-of-mouth within the hiv and the disability communities in lusaka. snowball sampling was also used, whereby participants were asked to share study information with other potential participants. individuals interested in the study communicated with the study coordinator who was based in lusaka. they then received additional information about the study purpose, procedures and safeguards for participants. ethics approval was received from the university of zambia, university of kwazulu-natal and the university of toronto. data collection in this cross-language, qualitative study (temple 2002), in-depth, semi-structured interviews were conducted in one of four languages: english, nyanja, bemba and zambian sign language. the research coordinator, fieldworkers and transcriptionists were all fluent in english, nyanja and bemba. two of the fieldworkers were women with disabilities and two were hiv counsellors. in addition, two of the fieldworkers were certified zambian sign language interpreters. for interviews conducted in sign language, the fieldworker conducted the interview in zambian sign language whilst simultaneously vocalising the questions and responses to enable the digital recording and subsequent transcription. the fieldwork team was hired and trained specifically for this project. training included an initial three-day orientation, a two-day mid-study training session and on-going support from the study coordinator. the interview guide included questions to explore the experiences of living with both hiv and disability. the interviews explored the multiple experiences of the participants, as well as the meanings and interpretations that they attached to these experiences. specific questions were also asked relating to sex, intimacy and partnership (see box 1). interviews were conducted at a private location chosen by the participant (usually in their homes). data were stored on password-protected universal serial bus (usb) keys until they could be transferred to an encrypted website. data were collected from august 2010 to june 2011. box 1: sample questions from the sepo study interview guide. to facilitate collaborative coding and data analysis amongst the international research team, it was necessary to select one common language (english) in which all transcripts would be made available (squires 2009). this was achieved through simultaneous transcription and translation; the transcriptionist listened to the digital audio file in the source language and transcribed it directly into english. any vernacular content that did not translate easily into english was maintained in the source language in brackets in the transcript. various steps were implemented to increase cross-language trustworthiness and rigour (squires 2009). before the data was analysed, both the zambian research coordinator and the fieldworker who conducted the interview reviewed all completed transcripts and compared them against the original audio file to ensure accuracy and completeness of translation (lopez et al. 2008). the research team and fieldworkers participated in two data-analysis meetings where preliminary findings were presented and discussed in order to validate the results and provide additional contextual interpretations. analysis top ↑ the analysis presented in this article was developed through a two-stage process. firstly, the sepo study research team conducted a collaborative descriptive-analysis process of all data. for this stage, a coding framework was developed inductively and two members of the team coded each transcript. data were organised using nvivo 9 (qsr international, usa). each code was analysed descriptively and these preliminary results were vetted with the fieldwork team (nixon et al. 2011). one set of findings related to sexuality and intimacy.in the second stage, the co-authors of this article further analysed the data on sexuality and intimacy using a gender lens. both original transcripts and coded data were revisited to examine how women in this study talked about: • intimacy, partnership and sex • themselves as sexual beings (or not) • themselves as disabled beings (or not) • family and community reactions to their hiv diagnosis. how female participants’ roles and relationships were disrupted, changed or transformed following hiv diagnosis, and how participants were able to negotiate these consequences was explored. it was also noted as to how hiv, gender and/or disability (such as axes of inequalities) may have singularly or conjointly influenced these women’s experiences. unique identifiers were used after each quote to indicate which participant had provided the data. results top ↑ participants twelve women from lusaka participated in this study (see table 1). six interviews were conducted in nyanja, four in bemba, one in zambian sign language and one in english. table 1: participants characteristics. the participants described two main ways in which hiv, disability and gender had shaped their experiences of their sexualities. firstly, data is presented to reflect the impact that hiv diagnosis and disclosure had on intimacy within their relationships. secondly, participants’ views of the disruption and negotiation of gender roles that followed hiv diagnosis and disclosure are described. impact on and changes to intimacy during the interviews, participants were asked about the direct impact of hiv diagnosis on their intimate relationships. participants were interviewed in the two sets (s) of in-depth interviews. it was through the descriptions of how participants contracted hiv that the limited agency of participants within their relationships was first indicated. many of the women talked about their hiv status being caused by having partners who were promiscuous. one participant (p) (s1, p06) described how her boyfriend lied to her and was actually being ‘very promiscuous.’ another participant described the nature of her relationship with her first husband:‘through my first husband, because he never used to, he was a truck driver, and was promiscuous ... [h]e used to bring girlfriends in the house like that. maybe he’d remove me from the bedroom, and he sleeps with the girlfriend in the sitting room.’ (s2, p08) the accounts of these two participants, which are in contrast to descriptions of the relationships given by other participants, reinforce the importance of recognising that the impact of hiv diagnosis within intimate relationships is not experienced homogenously amongst women. with the exception of one participant, all female participants who were interviewed were not in intimate relationships at the time of the interviews. some had been left by their husband upon hiv diagnosis; others were widowed or never married. only two of the female participants who had been in relationships at the time of diagnosis maintained those relationships after becoming hiv-positive. the accounts of those participants whose relationships ended following hiv diagnosis were consistently described as being the decision of their partners. one participant described the reaction of her husband, who she told of her hiv diagnosis following the doctor’s advice that she ought to inform him: ‘so when i came home, after we ate, we even started laughing and chatting. that’s when i started telling him that, “listen how it went at the clinic. they found me with the virus”. so my husband, i just saw, just there and then, he changed and got upset. “found you with the virus, how? no, me, i don’t know what you are talking about”. so, um i started thinking ah! ok. i then saw life in the house changing. my husband’s head that side, and my head that side [sleeping arrangement]. we started differing in the home. so, i got back to the clinic. i told the doctor that, “no, this same husband, we’ve differed in the home. he has even decided to leave the house”’. (s1, p07) participants whose relationships had ended as a result of hiv diagnosis described being abandoned by their partners and in most cases, where there were children, participants were left to care for the children alone: ‘i started getting sick. so when i started getting sick, he [husband] told me that “you’re sickly. why are you sickly?” i told him that, “why am i sickly? it’s not my fault. i don’t know what i’m sick of. so it’ll be better for me to go to the clinic to get tested.” i got tested. i then told him that, “listen, they’ve found me with such a disease.” [hiv] he said, “i can’t manage to live with a wife who is sickly. so it’s better i go and look for others who are not sickly. remain with your ailments”. i told him that, “ok, there’s no problem, only god knows”. that’s how he went.’ (s1, p10) one other participant remained in a relationship. she described the impact of the hiv diagnosis on that relationship as being out of her control: ‘one, we are not intimate. we don’t sleep, we are not intimate. two, he has refused to go for a test. he doesn’t take medication, says that, “it’s none of my business”. and, looking for food, he doesn’t put any effort. i start off alone; i go and search for food. now imagine, i’m taking medication, i start off, going to look for food, but meanwhile, you’ve got somebody you are calling a husband in the house, and him, he has refused. how can you feel even if it were you, how can you feel?’ (s1, p07) in this quote, the husband, when hearing of his wife’s hiv diagnosis, relinquished his responsibility for finding food for his family and left the woman with no choice but to take on this role as provider. the participant goes on to offer advice to disabled women, warning them not to be flattered by the attention of men and also cautioning them not to fear seeking treatment for hiv: ‘[t]he disabled, us the women should be careful. don’t just see that this man has legs, he has liked me, i’m beautiful. beware! even me, i didn’t know, i thought that he has liked me, he’s showing me love. one, he saw that i had money. two, he knew that this person will keep me forever. as i’m talking right now, the man does not do anything. but i go, despite my illness, i go and look for things. fellow disabled, again if you are hiding [your hiv status], it will just bring you problems, and your relatives will have a loss. you’ll die, and life will still go on, while the medicine is even there, um. that’s what i just want to encourage the disabled.’ (s1, p07) there is also evidence that some women were able to exercise agency in relation to their sexual relationships, sometimes consciously choosing abstinence. one participant, who had previously described the promiscuity of her husband, when asked about how she is able to take care of herself, explained: ‘yes, i can take care of myself because i know that if i start being promiscuous, it will mean my cd4 count will go down, and i’ll be getting sick frequently ... how can i take care of myself better, it is by avoiding men.’ (s2, p08) the agency of this woman to make the decision of abstinence is also present in another interview, where a participant was asked if there is anything she did to improve her health status. she replied, ‘support for hiv is not having boyfriends.’ (s1, p04) another participant (s1, p05) also explained that she decided there would no longer be an intimate sexual element to her marriage. since being positively diagnosed with hiv, she and her husband had no longer been having an intimate relationship for fear that it would make the hiv worse. when asked if she was concerned her husband would seek sexual relationships outside of the marriage, she responded, ‘that’s his business. now he should infect another person, that’s his business [laughs]. now i don’t have any business with him.’ (s1, p05) as such, some women actively decided to abstain from intimacy, whilst for others the decision was made for them. disruption and renegotiation of gender roles and identity the construction of femininity and the gender roles associated with it are intrinsically linked with the ability of women to fulfil expectations within the reproductive spheres of wife and mother. female participants in this study repeatedly described the impact of the hiv diagnosis on such gender roles. child rearing, care of household members and domestic duties were viewed as central to the construction of femininity and womanhood. different participants described the impact of hiv diagnosis on each of these areas. participants who were of child bearing age and were not yet married spoke frequently about no longer being a desirable prospect for marriage following the hiv diagnosis: ‘there are so many men who are after me right now, but i could tell them straight without hiding that i’m hiv/aids. and you know what? they couldn’t believe, until i insist telling them that, “no, i’m a, i’m an hiv/aids.” and they could say, “uh, no, you look nice.” and i could tell them, “though i might look nice, still, i’m hiv/aids. and if you’re ready for me as an hiv/aids, then you can some-, you can, uh i can, you can, uh, agree to my proposal and i can accept it.” but maybe all of a sudden someone here starts, um, he disappears. sometimes it really hurts me because maybe i, the one who proposes me, he’s a really, really good man and i could wish i could stay with that man. but, really do i have to, um, to tell him or to confide, to confide my history of hiv/aids? cause the disability is being seen. when someone comes to propose me, they see that i’m on the wheelchair, but with hiv/aids it’s different … and sometimes if someone disappears, and i loved him very much, it pains me a lot.’ (s2, p08) in this quote, it appears that the woman’s disability was not an issue for the men. however, the revelation of hiv and the associated stigma meant that the woman was no longer a marriage prospect. other participants spoke of not pursuing marriage or remarriage as a choice, although the extent to which that choice was a ‘free’ choice is not always clear. one participant explained: ‘i don’t even want to re-marry ... people, even when you find somebody that maybe you can spend your future with him, they refuse because of the same. they fear because you are [hiv] positive.’ (s2, p13) for participants who were already married at the time of hiv diagnosis, only one talked about having a child after diagnosis. she described the reaction when she gave birth: ‘me, the moment i just bore the child, they told me that, “just this one. that’s all”’ (s1, p06). none of the other female participants in the study spoke of planning to have children or committing to marriage following hiv diagnosis. the challenge that hiv diagnosis poses to the capacity of the female participants to care for household members and carry out domestic duties was articulated often throughout the study. how this impacts on family life and how this is negotiated varied widely. the majority of the participants described the challenge to fulfil their gender roles as a result of being diagnosed with hiv and having a disability, but one participant, with the support of her family, had been able to renegotiate her position and maintain her role within the household. when asked about how her hiv diagnosis had affected her role within the family, the participant noted, ‘as a wife, i have to execute my duties, and also as a mother, aah.’ (s2, p02) hiv diagnosis and relationship breakdown in almost all cases further blurred the reproductive and productive roles of the participants. female participants in the study often had to fulfil the role of provider for themselves, and in some cases for their children, as almost all the female participants were living in female-headed households. their various impairments often presented as additional obstacles in fulfilling these roles. one female participant, whose husband left following her hiv diagnosis, explained that she had heard that he is also sick and unable to work and provide money for the children. she then reflected on the implications of this change in the role of provider within the family for her children: ‘i don’t manage as to what the children need. sometimes they come and say, “mummy, at school they want this thing.” if i don’t have, i tell them i don’t have. i say, “no, i don’t have. god will, time will come, he’ll give to us.” but i do complain because of the fact that i won’t manage to take care of the children alone, taking them to school on my own.’ (s1, p10) another participant provided a different perspective to the others who had almost exclusively described being hiv-positive and having disability as a double-burden in relation to accessing financial resources. she suggested that having hiv had a negative impact on an individual’s capacity to support themselves, but the fact that she had a disability meant that she was able to secure resources without engaging in sex work in comparison to other able-bodied women. this participant explained that she could protect herself more than the women who ‘go to the tavern’ who are not disabled because she is ‘able to go and beg.’ (s2, p11) the burden of economic productivity also impacted on the perspectives on the role of government. one participant explained that she believes the state should sometimes intervene not only after hiv diagnosis, but in order to prevent contracting hiv in the first instance, especially for people with disabilities: ‘the government needs to support us in every way, especially for us who are hiv/aids. and for those maybe who are not hiv/aids. yes maybe because of poverty that has made us, many of our disabled people, uh to engage themselves with men so that they give them money and at the end of the day you find yourself with hiv/aids. if they could do something uh, to keep busy, not to be thinking of men, who could do nothing but bring us some virus like this.’ (s2, p10) gender roles are also formed and shaped through interactions between individuals and their social world. they are also pivotal to the construction of identity and experience in relation to gender and sexuality. participants repeatedly described how their hiv diagnosis impacted on their identity and on social relations due to the reactions and attitudes of community and family members. negative comments from families were characterised as particularly ‘hurtful’ and difficult to receive. some participants would only disclose hiv status to family members that they thought should know or would be supportive. reactions from the community were also often characterised as painful and negative. one female participant described the way the community reacted to her diagnosis: ‘no, we don’t feel good because what they normally say is offending. they say that, “this person also, she is disabled and she adds on this disease. can’t she just stay? also the doctor that gives her medication, if only he could give her one for killing her. i heard this for myself.’ (s2, p11) the majority of female participants experienced ostracism from some family members or within their communities. however, there were also examples of support from community members and family members: ‘even when i say that i’m ill, they [family] are fast to take care of me, yes. when i say, “ah, i’m not feeling well. what is the matter?” fast fast, they take care of me, concerning issues of hospital.’ (s2, p08) the participants who described positive reactions from their partners, families or communities were more likely to also provide examples of how they negotiated their sexualities and gender roles in a broader context. overall, the analysis demonstrates that hiv diagnosis, gender and disability may singularly or jointly influence the experiences of women in relation to intimacy and gender roles within the household and family. however, how this impact manifests and how the participants negotiate it varied significantly and may be linked to factors that existed prior to hiv diagnosis. discussion top ↑ this is the first article that explores how the intersection of disability, hiv and gender amongst women with disabilities and who are living with hiv has shaped their perspectives on their sexualities. more broadly, this article is amongst the first to present empirical data from people with disabilities who are positively diagnosed with hiv. as such, it extends the existing literature on hiv prevention amongst disabled communities by refocusing on the experience of living with hiv, which has been largely overlooked to date (groce et al. 2013). in particular, our analysis led to the identification of two main themes: the impact of hiv diagnosis on the intimate relationships of the participants and the disruption and renegotiation of gender roles. these findings challenge misconceptions about asexuality and genderless identity amongst women with disabilities. challenging stereotypes of asexuality participants’ accounts challenge the assumptions of disabled people being asexual and without gender. numerous authors, including milligan and neufeldt (2001) and bonnie (2004), have described how society tends to dismiss sexuality as a fundamentally important factor in the lives of disabled people: ’[m]any people assume we are asexual, often in order to hide embarrassment about the seemingly incongruous ideas that such “abnormal” people can have “normal” feelings and relationships.’ (morris 1989:80) bonnie (2004) argued that there has been a taboo in many societies around discussing the sexuality of disabled people, since sex has been associated with marriage and procreation and disabled people are often not expected to experience either. assumptions around the asexuality of persons with disabilities can manifest in different ways, including assumed inability to engage in sexual activities and lack of attraction to others. this can be compounded by the expectation that people with disabilities are dependent on others and not seen as productive individuals who could contribute to partnerships. participants’ accounts in this analysis challenge these assumptions, as the women portray full lives that include intimate relations and productive roles as wives and mothers. implications for intimacy the women in this study describe how hiv diagnosis had a significant impact on the expression of their sexualities through intimacy and intimate relationships. how participants negotiated the impact of hiv and disability with multiple situational factors reflects the diversity of the lives of female participants prior to hiv diagnosis. the limited agency to renegotiate their roles within intimate relationships is described often, with only two female participants maintaining relationships after being positively diagnosed with hiv and only one of those continuing physical intimacy within that relationship. the impact of restrictions on intimacy and the breakdown of relationships can be far reaching. participants whose relationships ended following hiv-diagnosis characterised this decision as being the choice of their partners. although several participants also describe ways in which they are re-negotiating their roles within their relationship or household, this is not the norm amongst participants in this study. they often described being abandoned and left to provide for themselves and their children, an experience also seen amongst able-bodied women upon being positively diagnosed with hiv. this finding allies disabled and non-disabled women in the struggle for gender equity, as it relates to hiv stigma. there also appears to be limited awareness about strategies for decreasing the risk of hiv transmission during physical intimacy and in pregnancy, reinforcing the call for hiv education amongst people with disabilities (dhat 2011; groce 2005; rohleder et al. 2012). human immunodeficiency virus, gender and disability the disabled women in this study narrate their experiences in gendered terms. the impact of gender, disability and hiv on the female participants supports the reviewed literature about gender, sexuality and disability. the literature argues against a narrow, homogenous or static understanding of gender, sexuality or disability and instead emphasises the impact of culture and society in shaping how gender, sexuality and disability are experienced and the central role they play in maintaining power relations in society (helle-valle 2004; mama 2007; morris 1989; oinas & arnfred 2009; shakespeare 2000; tamale 2011). it also extends this research base by exploring how hiv can impact on these dynamics. the female participants’ abilities to negotiate roles as mother or wife are impacted by both hiv and by stereotypes related to disability. gender inequalities appear to be further entrenched through the sexual dimension of living with hiv and the social dimensions of reproductive and familial care responsibilities. despite these challenges, women demonstrate resilience in creating supportive environments for themselves and their children. these findings challenge assumptions about the gender neutrality of women with disabilities, as evidenced by the narratives of how these disabled women have experienced gender constructions throughout their lives. limitations top ↑ the in-depth interviews on which this analysis is based were not singularly focused on gender or sexuality. as such, the training provided to fieldworkers did not focus as heavily on how to collect sensitive data on sexuality, as would have been the case in a study primarily looking at this topic. as such, it is possible that limitations of the data relating to sexuality may reflect not only on the possible hesitation of the participants to reveal insights, but also on the potential hesitation of the fieldworkers to probe into this topic during interviews (gune & manuel 2011).an additional limitation relates to the theories of power and knowledge production. when writing about research of ‘african’ sexualities, tamale (2011) reminds us that the language of western colonialists has dominated sexual discourses; as a result, rich cultural connotations and ambiguities can be lost in translation. to mitigate this impact, the authors attempted to remain close to the data and to relate it to the theoretical perspectives advanced by both developed and developing world scholars across the fields of hiv, disability and gender. conclusion top ↑ overall, this study illustrates how assumptions regarding the sexualities of disabled women permeate the lives of the participants and shape their interactions within their relationships, their community and family. as such, approaches to sexuality and hiv that consider only the impact of health need to be expanded in order to consider the many ways in which sexuality is part of the lives of individuals, both within heterosexual relationships between non-disabled women and men, and those who are not. the findings call for increased recognition of the importance of sexuality in all individuals’ lives, noting that sexuality relates not only to health and reproduction, but is also interconnected with the broader notions of wellness, integration and inclusion. policy, programme and research approaches to disability and hiv can be strengthened by becoming inclusive, gendered and by avoiding essentialisms. responses can be informed by the complex and diverse realities of women’s lives, emphasising diverse abilities, sexualities and capacities.further research is needed to explore the different ways in which both masculinity and femininity are constructed and are impacted by hiv and disability, whilst recognising that gender and sexualities permeate all elements of identity. little is known about the impact of hiv diagnosis on the sexualities of men with disabilities. however, literature related to men, masculinities and disability discusses the dislocation of masculinity experienced by men with disabilities. meekosha (2004), nario-redmond (2010) and shakespeare (2000) argued that men with disabilities are often feminised in the way that they are constructed in the public sphere. the impact of hiv, disability and gender on the masculinity of the participants may be more apparent in the obstacles that they experience in relation to employment, social status and participation in society and the impact on independence, self-sufficiency, ability to provide for their families and to their capacity to be self-determining. these are important areas of enquiry going forward. finally, there is a need for research that explores the positive sides of sexuality, particularly amongst those for whom gender norms and stereotypes obstruct opportunities to seek pleasure and fulfilment. by building this evidence base, we can further challenge the damaging stereotypes about gender and ability that typically inform approaches to hiv. acknowledgements top ↑ funding sources: the canadian institute of health research, the centre for urban health initiatives and the university of toronto dean’s fund funded this study. in kind contributions were also received from the health economics and hiv/aids research division, the disability and hiv/aids trust and the international centre for disability and rehabilitation.fieldwork team and collaborators: we acknowledge the important contributions of the sepo study research team, the zambian fieldwork team and the study collaborators including: the canadian working group on hiv and rehabilitation (cwghr); the disability and hiv/aids trust (dhat); health economics and hiv/aids research division (heard); and the international centre for disability and rehabilitation (icdr). we also acknowledge the important contribution of jerker edstrom, research fellow at the institute of development studies, for his support during the initial conceptualising and for feedback on this article. competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions a.w. (university of sussex) conducted the analysis of data for this article as part of her master’s degree, and this led to the writing and revisions of this article. s.n. (university of toronto) was the study’s principal investigator and was responsible for conceptualising and implementing the study; she was also co-advisor to a.w. for the analysis in this article. k.k.y. 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(ed.), african sexualities, a reader, pambuzuka, oxford. temple, b., 2002, ‘crossed wires: interpreters, translators, and bilingual works in cross-language research’, qualitative health research 12, 844–854. pmid:12109728 thomson, g.r., 1997, ‘feminist theory, the body, and the disabled figure’, in l.j. davis (ed.), the disability studies reader 279–292, routledge, london. winningham, a., gore-felton, c., galletly, c., seal, d. & thornton, m., 2008, ‘lessons learned from more than two decades of hiv/aids prevention efforts: implications for people who are deaf or hard of hearing’, american annals of the deaf 153(1), 48–54. http://dx.doi.org/10.1353/aad.0.0002, pmid:18619068, pmcid:2728086 abstract introduction conceptual and theoretical framework research design and methodology results discussion ethical considerations limitations of the study conclusion and recommendations acknowledgements references about the author(s) paseka a. mosia inclusive education department, university of south africa, south africa educational foundations department, national university of lesotho, lesotho nareadi phasha inclusive education department, university of south africa, south africa citation mosia, p.a. & phasha, n., 2017, ‘access to curriculum for students with disabilities at higher education institutions: how does the national university of lesotho fare?’, african journal of disability 6(0), a257. https://doi.org/10.4102/ajod.v6i0.257 original research access to curriculum for students with disabilities at higher education institutions: how does the national university of lesotho fare? paseka a. mosia, nareadi phasha received: 19 jan. 2016; accepted: 19 dec. 2016; published: 28 apr. 2017 copyright: © 2017. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: creating access to curricula at institutions of higher education for students with disabilities requires a concerted effort from management and other key stakeholders to identify students’ needs and create opportunities for success. objectives: this paper presents the findings of a study which examined students with disabilities’ access to curricula at a higher education institution in lesotho. method: data for this qualitative study were collected using three methods: in-depth interviews, focus group discussions and document analysis. eleven students with various types of impairments and 15 academic and non-academic staff members currently working in close proximity to students with disabilities participated in this study. results: the findings reveal inconsistencies between the institution’s admission policy of non-discrimination according to disability status and its practices. these inconsistencies are discussed under the following themes: (1) access at admission level, (2) management of disability data, (3) support by the special education unit, (4) teaching strategies, (5) support by lecturers, (6) availability of assistive technology, (7) special concessions and (8) students’ coping mechanisms. conclusion: we recommend that a clear policy concerning the support of students with disabilities be developed with the following aims: guide decisions on how disability data should be used, define roles that different university departments must play in facilitating access to curricula for all students, influence suitable development of teaching and learning resources, stimulate research on success and completion rates of students with disabilities and mandate restructuring of programmes that are currently inaccessible to students with disabilities. key stakeholders, including students with disabilities, disabled persons’ organisations, disability rights activists, and staff should be involved in such policy design. introduction debates concerning access to curricula at higher education institutions (heis) for minority groups, particularly persons with disabilities, are characterised by a continued tension between merit and equality. the tension continues to exist even though many years of access for non-traditional groups to study at this level of education have been provided (leach 2013). one of the many issues raised in this debate concerns the relevance of current syllabi to contemporary student populations in the majority world (see read, archer and leathwood (2003), reay (1998) and nkoane (2006) for a discussion of this issue). despite the breadth of the issues discussed by these authors, one parallel which the discussion around curriculum relevance has with issues faced by persons with disabilities has to do with accommodation. writing about cultural adaptation of curricula, nkoane (2006) argues that each student requires a curriculum that speaks to his or her own issues and taps into his or her areas of creativity and strength. access to education requires that ‘every aspect of schooling, from policy to curriculum to pedagogical elements, to leadership, to ethos and culture … change in order to educate learners within a common framework’ (terzi 2014:483). with specific reference to individuals with disabilities, there should be adaptations in terms of teaching approaches as well as the modification of the physical arrangement of the classroom, if required (habulezi & phasha 2012). in addition, access should involve using a medium of communication that is appropriate and accessible for all learners to facilitate independent interaction with the content. within the access discourses, issues of how social institutions create excellent and equitable opportunities for all to benefit take centre stage. skrtic (1991) argues that student disability is neither a human pathology nor an objective distinction; it is an organizational pathology, a matter of not fitting the standard programs of the prevailing paradigm of a professional culture. (p. 169) skrtic’s (1991) argument places the responsibility for the exclusion of students with disabilities with their institutions. although an extreme stance, the creation of access to education for students with disabilities and other minority groups is fundamentally an effort to transform institutions to accommodate and support human diversity. research from the united kingdom, turkey and canada, however, shows that there are often barriers to universities fulfilling this mandate. vickerman and blundell (2010) indicate that the united kingdom (uk) has good policies but that these policies are not supported by appropriate staff training explaining educators’ responsibilities for making education at heis accessible. equally, universities are rewarded for producing equity plans and there is funding associated with the inclusion of students with disabilities, and yet some students still hide their disabilities to avoid discrimination (riddell & weedon 2014). countries such as the united states of america (usa) have well-known policies and legislation supporting the right to education for students with disabilities at all levels, however, implementing those policies remains a problem. at the level of implementing policy, then, support for students with disabilities has been found lacking. furthermore, according to gelbar et al. (2015), students with disabilities still face challenges such as inaccessible buildings, rigid curricula and negative attitudes of staff and lecturers who lack information on disability issues and allow only minor accommodations which constrain access to education for students with disabilities (murray, wren & keys 2008). likewise, in turkey, the needs of students with disabilities are ignored (arslan-ari & inan 2010) mainly because of poor resources and the placement of disability units under the authority departments that do not deal with disability issues. without an independent budget, services to students with disabilities are negatively affected. mullins and preyde’s (2013) study in canada revealed that despite the country’s policies which require heis to eliminate physical barriers and create access, structural barriers remain an obstacle for curriculum access. sachs and schreuer (2011) maintain that some institutions pay attention to academic and physical accessibility at the expense of students’ social participation and support. there is a good reason to believe, then, that the inclusion of students with disabilities in heis is often ill-executed. clearly, as these authors note, there is a disjuncture between what policies state, and what occurs, and that the barriers to inclusion and accommodation are not merely practical but also social. furthermore, evidence suggests that such policies serve institutional ends which have less to do with the inclusion of students with disabilities, and more to do with funding, and achieving equity goals ‘on paper’. this appears to be the case even in high-income contexts which are not characterised by the constraints on resources found in low-income settings. in the latter context, it is perhaps even more likely that heis would lack the requisite resources, skills, and capacity to create, or enact, such policy. indeed, research on access practices at heis in lesotho is limited. an extensive literature search revealed only two studies. a survey by the lesotho council on higher education (che) (2012) highlights that many buildings in tertiary institutions in lesotho are not accessible for students with disabilities, one of the root causes of low participation of these students. specifically, in the case of the national university of lesotho (nul), there is a failure to identify all students with disabilities, especially those with physical impairments (che 2012). this survey provides no further details than the basic challenges of identification and low participation of students with disabilities (che 2012). the survey does not deal with challenges related to curriculum access for disabled students. in the second, and only other study, matlosa and matobo (2007) investigate access constraints faced by the visually and hearing impaired students at heis in lesotho. their study shows that access for students with visual impairments to science-related programmes is constrained by mathematics and statistics requirements, insufficient resources and lecturers’ lack of understanding about the students’ disability and support needs. this study excluded students with other forms of disabilities. an understanding of a wide variety of disabilities is necessary for ensuring curriculum access of the group in question at heis. importantly, hearing from students with disabilities will offer them an opportunity to make contributions on matters that affect them. as an attempt to close the gap, the present study addressed the following questions: how accessible are higher institution’s programmes to students with disabilities? what practices are in place to facilitate access for students with disabilities, and what challenges – if any – face students with disabilities in their attempts to achieve full and effective participation at the university? conceptual and theoretical framework in the present paper, we are concerned with access to heis. thinking about access to curricula at tertiary level entails a consideration of equality, equity and justice. these terms attract multiple and polarised interpretations hence the need to establish their meanings for this study. walker (2003:169) observes that though formal university education makes a positive contribution to people’s lives, ‘it produces justice and injustice, equity and inequity’ if left unmodified to the needs of different groups. therefore, there is a need to transform the education systems to ensure respect for human rights and to certify the attainment of social justice (dyson 1999). in the sections which follow here, we consider the equality, social justice, and distributive justice, examining each for their relevance to our study. we focus on sen’s (1979, 1985, 1999) conception of access, as conceived of in his capabilities approach, supported by a distributive justice framework. we suggest that these two conceptual frames allow for a thinking through of access issues encountered by students with disabilities in heis which is particularly useful. equality, social justice and equity in describing equality, terzi (2014:484) states that social and institutional activities should assure ‘equal consideration to all’ and provide ‘equal entitlement of every child to education, while acknowledging and respecting individual differences’. equality of opportunity in education, in the past, was premised on the idea that – given access, or exposure, to a given curriculum, individuals from any background, might be expected to stand to reap the same gains. the premise, naïve as it was, was that, if educational opportunities were made more widely available to individuals from previously marginalised groups, then those individuals might be expected to achieve just as well, perhaps, as individuals from groups long included in such opportunities. when this conception of equality of opportunity paled in popularity because of its inherent flaws (access and exposure are necessary, but not sufficient, conditions for equality of opportunity), it was followed by another, equally problematic idea: that students with different capacities, should be given ‘equal opportunity’ by being separated and given tasks suitable to their perceived capacity and proposed prospects (coleman 1968). contemporary definitions of equality of educational opportunity, however, now attend to the multiple ways in which histories of inequality and lack of access to education, minority status and social disenfranchisement might impact on individuals’ capacity to enjoy an equal chance to thrive in an educational setting, and so incorporate an idea about participation, and not merely inclusion. however, given the recognised limitations of the idea of equal opportunity to redress past inequalities, the concept of social justice has come to the fore in higher education access debates. this stems from the recognition that inaccessibility, or failure to adequately profit from tertiary education, arises from complex web of social injustices related to students’ socio-economic contexts, race and geopolitical position. usefully elaborated by sen (1979, 1985, 1999), the capabilities approach to higher education shows how any attempt to create social justice in educational settings must incorporate both a consideration of what a given individual can do and the individuals’ ability to enjoy their abilities in the context of opportunities (wilson-strydom 2011). the first concerns sen termed functionings – achieved outcomes, the things that a person is able to be or to do, and the second, capabilities – which combines the idea of functionings with equality of opportunity. functionings are ‘actions and states that people want to achieve and engage in’ (terzi 2014:485). at tertiary level, functionings relate to the ability of students with disabilities to take part in the curricula activities without barriers and achieve desired outcomes (wilson-strydom 2011). conversely, capabilities are ‘the genuine, effective opportunities that people have to achieve valued functionings’ (terzi 2014:485). capabilities are enhanced if students have more educational opportunities than disadvantages and marginalisation (wilson-strydom 2011). capabilities, then, are the freedom a person has to enjoy valuable functionings (alkire & deneulin 2009; deneulin, nebel & sagovsky 2006; sen 1979, 1999). the capabilities approach, as wilson-strydom (2011) points out, entails a clarion call to universities to achieve access with both [the] redistribution of resources and opportunities and recognition and equal valuing of diversity along intersecting axes of gender, social class, race, ethnicity, disability, age and so on. it thus integrates distributional, recognitional and process elements of justice. (p. 411) as wilson-strydom (2011) writes, the capability approach argues that in a just world social structures or social organisations should expand people’s capabilities – their freedom to achieve what they value doing and being. capabilities (opportunity freedoms) and functionings (achievements) are influenced by individual circumstances, relationships with others, social conditions and contexts which create spaces for opportunities to be realised. (p. 412) distributive justice the capability approach, and an expanded definition of social justice, implies that individual differences should be catered to in educational settings. in order to achieve such recognition of individual differences in life histories and goals, while not re-perpetuating the faults of early conceptions of equal opportunity, necessitates a consideration of the idea of distributive justice. salmi and bassett (2014) ascribe the development of the distributive justice model to the work of john rawls (1985), amartya sen (1985), and ronald dworkin (1981) among others. there are several perspectives of social justice among which is the distributive component (gale & tranter 2011); hence singh’s (2011) claim that the meanings and uses of social justice are becoming stretched in different directions. some distributive justice perspectives denote the equality and justice ideas referred to above which focus on fairness and sameness. however, mckee (1981) argues that distributive justice calls for all perspectives of justice to operate at once. that is, individuals should be afforded the freedom of making choices and be compensated for their disadvantage through positive discrimination (distributive) (gewirtz 1998). individuals’ rights should be protected and they should be exposed to the same conditions or services and punished individually for a violation of rights (retributive). in addition, all must have choices to achieve their potential through processes that promote the interests of minority groups (recognitive) (gale & tranter 2011). according to rawls (1971:6), justice is brought by ‘the way in which the major social institutions distribute fundamental rights and duties and determine the division of advantages from social cooperation’. that means that people’s natural features should neither give them superiority nor make them worse off; impairments are just natural human attributes but the way social institutions distribute goods and services may result in just or unjust practices for individuals with impairments (rawls 1971). walker (2003:172) adds that ‘our preferences and choices are shaped and informed or deformed by society and public policies’. our argument resonates with dworkin’s (1981:302) assertion that individuals with impairments face their lives ‘with what we concede to be fewer resources, just on that account, than others do. this justifies compensation, under the scheme devoted to equality of resources’. therefore, unless there are any concrete efforts by tertiary institutions to create meaningful opportunities for people with disabilities, access to curricula would have been denied. distributive justice obliges heis to have (1) a modified admission requirement to cater for the diverse pre-tertiary education context of minority groups and (2) curricula reformed and support enabled to safeguard those admitted to have ‘practical and socially meaningful educational success’ (waetjen 2006:205). sen’s (1985) notion of access, as conceived of in the capabilities approach, also suggests that disadvantage should be compensated. research design and methodology this qualitative study adopted a single case study design. the design offers the benefit of investigating a single unit intensively (yin 1994). taken as a whole, qualitative research is ‘inductive, subjective, and contextual’ in nature, and offers an opportunity to capture the unique experiences and beliefs of participants in their interaction with their context (morgan 2014:47). in the context of the present study, exploratory as it is, such an approach affords us the opportunity to examine the participants’ accounts in depth, and allows for a nuanced understanding of their experiences. in exploratory research, such nuancing is imperative, as it cleaves open new areas of necessary inquiry to direct future work. research location the study took place at one of the heis in lesotho. the institution was established in 1945 as a catholic institution affiliated to the university of south africa (nul calendar 2006/7). the university admits 43.9% of lesotho’s undergraduate student population and 89.4% of postgraduate students. the total number of students enrolled at the institutions was 11 363 in 2011/2012 (che 2012:9). sampling and participants participants were identified by means of a purposive sampling technique – snowball sampling. purposive sampling affords an opportunity to reach ‘rich information cases’ (patton 1990). snowballing, in particular, is important for a hard to reach population (corbetta 2003), such as students with disabilities. the first three students were referred to the study by a special education needs assistant (sena). thereafter, following an interview, the participating students were asked to invite their peers with disabilities who may be willing to share their views about access to curricula. the criteria for selecting students included: being 18 years and/or above, registration in any field of study, willingness to participate in either in-depth interview or focus group discussions, and having impairment. gender, ethnicity and year of study did not form part of the selection criteria. we ended with a sample consisting of 11 students with disabilities. the students and the sena were of assistance in obtaining a sample consisting of 15 staff members at the institution whose responsibilities and the services they offer permit them closer contact with students with disabilities such as those working in the academic (10) and support units (5). the referees provided names and contact details of staff members who they thought might be interested in participating in the study. the first contacts with staff members were made by email, and then followed by a meeting to discuss the purpose of the study and to finalise the interview date. the selection criteria for staff included: having taught a disabled student or provided a support service to such a student (see tables 1 and 2 below for detail description of participants, pseudonyms and titles of the staff members). table 1: students with disabilities. table 2: staff participants. at the time of data collection, the university did not have comprehensive records of all registered students with disabilities. therefore, this study cannot calculate what percentage the 11 student participants represent of the total number of students with disabilities enrolled at the university at the time of data collection. data collection and analysis methods the study collected data by means of three methods: individual in-depth interviews, focus group discussions and document analysis. in-depth interviews interviews were semi-structured; guided by statements phrased into questions but flexible enough to allow research participants to raise issues pertinent for the study (hugh-jones 2010), and to express themselves in their own individual ways and at their own pace in-depth interviews lasted between 60 and 90 min. they took place at the university in a room allocated for this purpose. the first author facilitated all the interviews using english or a combination of english and participants’ home language, which is sesotho. they were scheduled during participants’ free time when they did not have classes and/or during weekends. all the interviews were tape recorded with participants’ permission following thorough explanation of research ethics including the principle of non-payment for participation. this form of data collection gave participants a platform to have their voices heard regarding, in particular, policies and practices in relation to access. according to morgan (2014), semi-structured interviews permit students to respond to questions freely while giving the researcher ample opportunity to gather participants’ additional insight on the topic. a sign language interpreter was involved during the interview with a deaf student. the interpreter was involved with the permission of the deaf student and a thorough explanation of research ethics, which were also followed by a written declaration. the interviews with each participant were conducted face-to-face. focus group discussions following in-depth interviews with all students, five students who were studying full time were invited to participate in a focus group discussion. of these, two are living with physical disabilities and three are living with visual impairments. these focus group discussions enabled us to follow up on issues that had arisen during the in-depth interviews and analysis of documents. participants were also able to share some information they withhold and/or exaggerated during individual interviews. participants had an opportunity to critique and discuss each other’s statements (gibson & riley 2010). overall, focus discussions allowed us to capture a wide variety of views within a short space of time. documents to complement the interview data, documents were analysed. these included university brochures, which are usually given to new applicants by the admissions department (available on the institution’s website), reports, minutes of meetings, and internal memoranda (memo) provided by the sena and those filed under special education needs folder. permission to use the institution documents such as memos and brochures was sought from the registrar and relevant offices including the office of the dean, faculty of education and admission office. data analysis interpretative phenomenological analysis (ipa) was used as a data analysis approach to examine participants’ narratives of their unique experiences (smith 2011). ipa provides an insider’s perspective of the subject and uses individual cases as the basis for explaining broader social issues (larkin, watts & clifton 2006). data were coded to discern ‘patterns that point to a theoretical understanding of social life’ (babbie 2014:409). coding involved scrutinising each individual case very closely and searching for similar or different patterns across cases (smith 2011) to come up with themes and sub-themes. this was followed by establishing relationships between sub-themes and themes to enable us to understand curriculum access for students with disabilities at the hei. as in any qualitative study, the process began in the field to ensure that subsequent data collection stayed focused. following each interview, the researchers listened to the recorded data to identify tentative themes and sub-themes, which were refined as soon as transcribed data became available. the process also involved establishing links between themes and sub-themes and was carried out until data saturation – that is, until the transcripts were no longer revealing information which made a novel contribution to the researchers’ understanding of the topic, as revealed by the themes and sub-themes. results the findings of the study are presented under the following themes: (1) access at admission level, (2) the use of students’ disability data, (3) support by special education unit, (4) teaching strategies, (5) support by lecturers, (6) availability of technology to facilitate curriculum access, (7) special concessions and (8) students’ coping mechanisms. in presenting the findings, participants’ words are quoted verbatim. access at admission level according to the institution calendar (2006/2007:11), admission is open to all students irrespective of their race, religion, gender or disability status. staff members indicated that programmes and courses are open to all students and they did not know of any student who had been refused admission on the basis of disabilities. however, a staff member did reveal that students with disabilities were more likely to enrol in humanities courses, as opposed to those in the science or business faculties. as a sena stated: ‘the programmes they [students with disability] register for are usually in the humanities. they do not delve into the sciences and other programmes.’ (participant 11, male, non-academic staff) these statements seem to imply that – although on paper students with disabilities had equal access to all faculties – there might be institutional barriers to their ability to choose freely from different courses. furthermore, as a sociology lecturer explained, there were accessibility issues which were thought responsible for some students with disabilities not to enrol: ‘students with visual disabilities cannot do economics because they would be required to be in front of computers manipulating data and all that.’ (participant 24, female, academic staff) comments from the admission officer suggested that the accessibility issue might also be one of staff perceptions of the capabilities of students with disabilities: ‘i remember one faculty was about to reject or, in fact, it rejected them. it was stated that students with visual impairment were not admissible in the faculty of law while it had previously admitted such learners who studied until they finished their law degrees. i think social sciences previously rejected them indicating that they have not yet secured equipment for their needs.’ (participant 25, female, non-academic staff) the students with disabilities also shared their experiences, which contrasted with the university admission statement, and reflected various ways in which they were discouraged to follow particular areas of specialisation. karabo, a student with cerebral palsy, whose first choice of study was mass communication, noted: ‘i was told there were no resources for admitting me to do my first year at diploma level [in mass communication]. i was not admitted and then i went to the special education unit of the ministry of education and training because they mentioned that if a student with disability meets the requirements, he or she [sic] must be given a chance. so admission criteria are problematic because they will admit a person who falls within their scope of education. the question is, which university should i go to if my needs are not catered for in this institution?’ (participant 8, male, student) a deaf student, thetso, who wanted to do a law qualification stated: ‘the lecturer told me that i would not be able to cope being here at school because you would have to sit in front and lip-read the lecturers.’ (participant 26, female, student) citing lack of facilities as the reason for discouraging students to follow particular areas of specialisations demonstrates the institution’s rigidity to accommodate students whose mode of function is different from the norm. it also demonstrates the lecturer’s misunderstanding of disability. the lecturer does not understand that lip reading does not only require sitting the deaf student in the front, but it also requires lecturer’s training in several aspects including talking position and pace, facial expressions and mouth shaping as training the deaf student in concentration and discerning words from the mouth shape of the lecturer. karabo further noted: ‘when i first came to the institute of extra mural studies [iems] here, adult education was not my choice course of study. the then head of department explained to me what adult education is and maybe they saw that i would not be able to do mass communication as i had applied to do mass comm.’ (participant 8, male, student) the student felt that he was channelled to a particular field of study, despite his uncertainty about such a premise. he might have been channelled to adult education because of speech complication, which might have been revealed during his interaction with the head of the department. the information obtained from documents attest to the students’ experiences. for example, paragraph one of a memorandum from the dean of student affairs to interim head-special education, dated 8th july 2009, revealed tendencies to discourage students from following particular areas of specialisation because of their disabilities. it reads: i confirm that ever since her enrolment at the university, mary [pseudonym] has experienced hearing problems leading to a situation where she does not do well in her academic pursuits. when she joined the institution in the academic year 2004/2005 she was doing law and she was advised to change programmes when she could not make it because we thought she failed on the grounds of hearing difficulty as she would not freely join others in legal arguments and discussions. the experiences above reflect gaps in terms of university policies and practices. admission policy claims to be open to all yet in practice students with disabilities are restricted from following particular programmes for reasons such as lack of resources and the perception that they will not cope. use of students’ disability data students are encouraged in the application form to declare their disability status and their support needs as the institution ‘is committed to respond to the needs of students with disabilities’ (nul 2015:2). however, such information is not used to improve curriculum access for students with disabilities. although the admissions officer claimed that information about students’ disabilities is captured on the system and the list of all registered students is submitted to the faculties, she also noted, ‘i have never seen that list sent out with the disability information’ (participant 25, female, non-academic staff). a lecturer at the institution’s iems concurs, claiming, ‘i’ve never had cases where somebody is indicating clearly that as an applicant she or he has some disabilities’. (participant 19, male, academic staff) it appears that information about a student’s disability status is not send out to faculties. students’ disabilities are identified accidentally as evident in the memo from sena to the dean of the faculty of education (23/07/2015). nevertheless, the institution admits qualifying deaf students and their hearing friends for ease of interpretation of sign language: it came to my attention through rumours that the university has admitted a student who is deaf, and this morning i actually met two ladies using sign language in the corridors and stopped to ask a few questions out of interest … a student … has been admitted in diploma in pastoral counselling programme with her friend so that her friend would help with interpretations. failure of students to make their disability known and to request the necessary accommodation causes delays in accessing curricula, as in the case of a deaf student who secured the services of a sign language interpreter in the seventh week of the first semester. as a consequence, the necessary modifications and adjustments of the learning environment are not implemented. lerato, a student with a physical disability, laments the fact that when timetables are set there is no consideration of her disability; classes take place in buildings that are far apart, and as a result she misses the first part of the lecture. she explains: ‘i sometimes have problems because you find that i have 8 o’clock class in the faculty and 9 o’clock class at the btm, so it means i have to walk long distance. when i arrive in class i’d find that the lecturer has covered much and i’ve missed so many things between ten minutes. i’ll find some lecturers covering but as for others in the faculty there’s the other who was teaching us and i had to explain to her, and she had to wait for me to arrive.’ (participant 4, female, student) raphael adds: ‘i don’t know if they are aware i’m there, they just don’t care. i mean, for example, some of my classes like i said 30% of my classes, which i’m forced like in the 1st floor at btm.’ (participant 5, male, student) some lecturers were experienced as being insensitive to students with visual impairments, thus making them feel excluded from the learning process. for example, thomas claims he always has to explain himself to lecturers: ‘i think in class, like i said, lecturers do not know anything about me … when they teach, maybe on the board they point and just saying this, “you see this and that”, and to me this and that is not clear. i don’t know what is that…many times i meet lecturers who doesn’t know anything about me.’ (participant 1, male, student) lack of support for some students with disabilities was credited with their withdrawal from the university, as in the case of a student who could not cope with the demands of attending classes in venues that were far apart. the faculty of humanities (foh) lecturer recounts: ‘i have a particular [case] of a student who enrolled for our programme in the past two to three years. she was having physical impairment…her type of disability was such that it was hard for her to attend some of the classes in the halls that were in the upper levels. that was one thing, the second thing was, sometimes the rooms were so separated that it would allow only students who are said to be able to move from one hall to the other [timeously]. physically they had to run from one hall to another. so she was not able to meet this kind of demand and, as a result, she was disadvantaged.’ (participant 14, male, academic staff) it can be suggested that the physical infrastructure at the hei is not friendly to students with physical disabilities. some may have dropped out from the institution because of the failure to attend classes that are in the upper levels and the movement from one hall to the other. it is not impossible that the student and staff accounts of the barriers to education, and causes for dropping out, experienced by students with disabilities are biased, and – indeed – in this sort of research, which deals with emotive and controversial issues, it is impossible to disentangle perception from fact – and it is not our goal. however, what these extracts do evidence is a lack of felt support among students with disabilities, and a perception, among the staff surveyed, that there was a failure to adequately make the requisite accommodations which these students required. support by special education unit since 1999/2000, the hei created a position for a sena to support students with disabilities. however, the support tends to be inadequate and geared towards one category of disability, namely visual impairment. this was clear in this assistant’s description of his work: ‘we primarily offer braille transcription. that is our main area of activity. we transcribe materials into braille and we can also transcribe from braille to normal text, so it’s just braille in essence.’ (participant 11, male, non-academic staff) the sena also administers tests and examinations written by students with visual impairment in a specially designed computer laboratory for individuals with visual impairments and manages computers installed with jobs access with speech (jaws). the library has the same hardware services for students with visual impairments. however, these services may not be known to all students, possibly because of poor management of disability data. as a consequence, students may only access these services some months after the commencement of the academic year. for example, norma, a student with a visual impairment, only became aware of the availability of the jaws computer laboratory on the day of the examination. she did not receive training on how to use the computers. she explains: ‘i was told that i was also writing while i had not oriented myself with the computers i was going to use for taking the test … . i should have practised with the computers before i could use them for writing a test.’ (participant 7, female, student) it was also evident that partially sighted students struggle with internet access, software compatibility and a lack of vision enhancement facilities. the operating systems of the computers both in the library and the unit were outdated and incompatible with jaws. in the special education service unit (sesu), they use jaws 13 with windows xp. lerato explains: ‘when we were in first year we struggled with internet. most of the time our assignments, because we can’t access books, we have to use internet to access books. so most of the time there won’t be internet in the office.’ (participant 4, female, student) seemingly, the institution does not have user-friendly study materials and resources including brailed books and books written in large print to facilitate access to curriculum by students with partial sight as a student uses the internet. this challenge, though it places more burden on disabled students, is not unique to students with disabilities but affects all students. however, as thomas notes, the issues faced by students with disabilities are perhaps more complex, and more in number, than those faced by the rest of the student body: ‘[computer software] cannot read some, so many things, it needs to be eh installed with os windows 08 too, so that it can be easily accessible. for instance when i’m getting into internet i can’t be able to read so many things there. it becomes slow and it takes long, a lot of time to access things. it [computer] is totally not compatible [with the installed windows software]. i write exams and tests with my own laptop. i am totally not using those ones. yes, and i think they are useless.’ (participant 1, male, student) the challenges brought by computers with outdated software are confirmed in a memo from sena to head-computer services unit (23/03/2015), which reads: it has come to the realisation of the office (special education needs) that the computers and related services currently available at the adc computer lab have become incredibly slow. inevitably, students’ academic work is frequently held back by the dwindling speeds of this ict infrastructure. i, therefore, humbly, ask that students…be allowed and assisted to access internet services provided through the adc computer lab using their personal laptop computers as they will outperform the two desktop computers and, in…[name omitted]’s case, have assistive software (jaws) already installed. teaching strategies lectures at the institution are offered mainly face-to-face. students are therefore expected to take notes of the lecturer’s verbal or written presentation on the board. this method is not accommodative of the learning styles and pace of students with disabilities who may experience challenges when taking notes of the materials presented. since projectors are not used, students with visual impairment (partially sighted) struggle to capture notes if the lecturer’s handwriting is not readable. the problem is worsened by the fact that there are no prescribed books for most courses and that available textbooks are not transcribed in alternative format such as large print to facilitate access for students with disabilities such as partial sightedness. the students’ frustrations are expressed in the following excerpts: katleho: ‘sometimes you would find that i would not be writing because questions would be written on the board and i explain that i can’t, i would not be using the pace of other students. they normally write faster than me, and when the lecturer is through with one side of the board, she would wipe off and write more questions. in such cases i would fail and i remember one of these lecturers would set another paper for me while another would read the questions for me after writing them on the board. there are cases where i was promised another test which never came.’ (participant 6, male, student) karabo explains that accommodations appear to be left to the lecturer’s discretion, meaning that, at times, students with disabilities are left behind due to teacher’s failure to recognise and cater to their needs. he recounts: ‘if a lecturer does not cater for my speed in taking notes, it means i am left behind. either i stop writing and listen or when i write i would miss certain parts of the lesson.’ (participant 8, male, student) lecturer support some lecturers’ lack of support poses a challenge to curriculum access for students with disabilities. in particular, lecturers tend to respond negatively when students with disabilities seek support by asking for clarity regarding previous lessons. this was clearly articulated by motse: ‘ … a lecturer would say something and i would struggle to catch it as fast as other learners. in the next class when one asks questions concerning the previous lesson, some lecturers ask why you did not ask during that lesson. sometimes you ask the next day that you did not understand much of the previous lesson, and you find that the lecturer is not eager to get back to what was taught in that lesson whereas other students would have understood well.’ (participant 10 male, student) also keletso, who received the notes from a statistics lecturer in her first year at the university, says: ‘others you’ll have to remind them every minute that after this class i have to have this and then sometimes they don’t prepare what they have to prepare.’ (participant 2, female, student) similarly, katleho mentioned that some lecturers tried to support him even though he could see that they were forcing themselves into working with him: ‘some of them would say that they need to be trained before dealing with my needs but i would assure them that my challenges were not severe. there are cases where i was promised another test that never came. it wasn’t good at all, in fact last year i had to supplement courses.’ (participant 6, male student) clearly, students with disabilities at the hei have to make other arrangements for their studies because lecturers’ support is not always guaranteed. even when attempts to provide support to the students were made, it was described as inadequate. an foh lecturer states: ‘i think my experience is that eh, the support that we gave was not sufficient in a number of ways in that, either the lecturers were not aware; by awareness i don’t mean seeing that they are around, but that they are around and they needed a special type of attention because of their impairments or disability.’ (participant 14, male, academic staff) sometimes, it took the intervention of special needs unit for students with disabilities to get support from lecturers. the memorandum below from the sena to dean, faculty of education dated 12th february 2015 attests: i hereby kindly confirm that mr. thomas will be sitting for his t323 examination this afternoon at 14:00. consequently, he will be unable to attend his lectures, elx3034 and elg3044 scheduled for 14:10 and 15:10 respectively. considering the importance of both the examination and the lectures to his academic and professional development, i humbly request that today’s lecture notes and complementary course material be prepared and provided to him by the concerned lecturers. a lack of adequate support for students with disabilities could be explained by the lecturers’ limited understanding of disability and the needs of such individuals, a problem which can also be traced to management of disability data by the university. availability of assistive technology to facilitate curriculum access students with disabilities rely on assistive technology to enhance their learning and access curricula. such equipment is provided by the institution but may not be accessed by all students who need them, for various reasons. as many of the students cannot afford sophisticated and advanced technologies, they resort to those that require augmentation. they often take a long time to transcribe material and sometimes omit important information from the lecture. katleho explains: ‘i got a voice recorder, but what i can tell is that when you are about to revise you need to take time because you need to listen to all, let’s say there is a two hours lecture and we have a total of fifteen weeks per semester …. it is a waste of time because a sighted person can go directly to sections he wants in his notes.’ (participant 6, male, student) similarly, norma states: ‘i use my laptop to record the lessons and let me tell you the disadvantage, the disadvantage of recording a lecturer for two hours is that where they laugh, cracking jokes, it records everything…this is different from someone who was using pen and paper for copying only important points of the lesson.’ (participant 7, female, student) also, karabo reports: ‘i have bought a laptop, which enables me to record lecturers [but] i don’t have anything to give the lecturer to amplify the voice so that when he moves around [i] can still record the voice well. therefore, the laptop still fails to help me capture all information shared by lecturers. to date, i still don’t know how to overcome this problem.’ (participant 8, male, student) thus the inadequacies of students’ technologies compromise their learning. it would benefit students if lecturers made teaching resources, such as notes, accessible to students and were cognisant of students’ use of technology which requires that lecturers project their voices appropriately. special concessions a generally applied accommodation by the institution is time extension during tests and examinations. for students with visual impairments, time accommodation is consistently 15 and 30 min for tests and examinations, respectively, as per the discretion sena. their examination takes place in the laboratory under the supervision of the sena. however, for the partially sighted, whose tests and examinations are written elsewhere, accommodations differ. keletso says her time is extended by 15 to 20 minutes for tests, but the time usually just covers time delays in giving her a question paper. she notes: ‘ … sometimes they even forget to set the question paper. i’m delayed for my tests sometimes, and start after time, all those things.’ (participant 2, female, student) however, katleho’s tests are written without time extension. he notes: ‘ … as classes start late, we would be writing from 5 to 7 p.m. and at 7 p.m. lecturers expect everyone to be done without excuses. you should understand that i’m writing with a pen, i was no longer used to pen and paper writing. my eyes normally get tired while writing, so when time is up some would just take papers. she would be expecting everyone to give out their answering scripts. though she may not be speaking to me alone but when she picks her bag and says she is going, you have no choice but to hand in the paper.’ (participant 6, male, student) as students with difficulties with fine motor skills, karabo and motse are allowed an extra hour for each 3-h examination. this differs from 30 min allowed for students with visual impairments. it is not clear how the distinction in time accommodation is decided because staff and students have contradictory views and expectations about it. karabo recounts: ‘ … the doctor recommended that i should be given an hour’s extra time for every three hours and i manage to write within that time. most of our examinations take three hours and i normally finish in three hours forty-five minutes, three hours thirty minutes depending on how demanding a paper would be. tests are normally not long; it is normally one or two questions written in one hour. lecturers do allow me to write beyond that hour.’ (participant 8, male, student) the university rules seem to be relaxed when it comes to karabo’s tests and examinations supervision. the flexibility is confirmed by the iems lecturer 2: ‘ … an hour or so but we usually have someone to be there to wait for him until he has finished writing.’ (participant 22, female, academic staff) this is inconsistent with the conditions provided for katleho who also studies at iems, as his statement above reveals. students with visual impairments, on the other hand, feel that the duration of tests and examinations is limited and their time accommodation might have been decided on according to generalised accommodation guidelines for all disabilities. this is a problem as different impairments require different accommodations (for instance, it might take a student with a visual impairment longer to read a braille text than it would take a deaf student to read it). thomas explains: ‘i’m reading braille, i’m reading with hands and, at the same time, i’m using hands writing on a laptop, typing. yes, to type is not that easy for me, and writing tests and, at the same time, touching braille. the time is limited because the added time is only thirty minutes.’ (participant 1, male, student) norma also states: ‘ … if a normally sighted person is reading a page, when the same page is brailed, not embossed as embossing is like translating, a normal printed page turns into three or four pages when brailed, it makes a pile. feeling the braille is much work and is better if the questions are in a soft copy.’ (participant 7, female, student) the two students with visual impairments feel that their time allowance in both tests and examinations is insufficient for their mode of learning. norma even suggests getting question papers as e-texts instead. students’ coping mechanisms in the absence of support from the university or when it is limited, students with disabilities come to depend on their peers to access curricula. in particular, they rely on peers for notes, finding library resources and discussions. thomas notes with regard to library resources: ‘when i write an assignment, i have to just check my references or bibliography on the internet. no books, unless someone could help me to find a book in the library. [other students] just read for me.’ (participant 1, male, student) a staff participant from the library confirmed: ‘actually, in most cases they have their friends but in the case where there is no one, we go there and identify books and then bring books into that room.’ (participant 12, male, non-academic staff) students also depend on the discussion groups with their peers. through those discussions they are able to access the content they may have missed during the lectures. thomas explains: ‘i’m coping through discussions with my classmates, only discussion helps. i’m not independent because when they are busy with their works, or rather when they would like to read individually, i’ll have to wait for them to come and discuss, and at that time there’d be nothing i could do. i just have to rest and wait for them to come.’ (participant 1, male, student) karabo shares the following: ‘i learn some of the content during group discussion but it depends how far time has advanced at the time of discussion. at times you only understand something when discussing for the exam, it is useless because you only memorise it for the exam and did not get it during normal lessons.’ (participant 8, male, student) notes of fellow students are not always helpful. motse states: ‘at times you look through notes of students from your region, only to find that the notes miss a section you wanted. students copy notes to suit their needs rather than capture everything. you find that students are not able to explain good enough for you to understand.’ (participant 10, male, student) insufficient support to students with disabilities leaves them vulnerable to their peers’ misrepresentation of lecturers’ lessons given that there are no prescribed books for all student participants’ courses. thetso indicates with regard to difficult-to-negotiate sign language interpretation services, which leave her reliant on a peer to assist her with her work: ‘one of the students is helping me, assisting me with the interpretation services.’ (participant 26, female, student) discussion findings of this study suggest that there is a disjuncture between students’ experiences of university accommodation practices, and current university policies regarding inclusion and accommodation. for example, the university calendar (2006/2007:11) states, ‘there are no racial, religious, gender or handicap barriers to admission’, but staff noted that students with visual impairments are not admitted in programmes that require mathematics and statistics as prerequisites. students’ experiences confirm observations by staff that some programmes have restrictions that limit the students’ choices. this provides evidence of limitations which deny access to some programmes offered by hei and, as skrtic (1991) asserts, inflexible programmes are discriminatory to students with disabilities. in this regard, read et al. (2003) argue that education which does not accommodate student diversity perpetuates inequality in society. these restrictions also violate the capabilities approach’s virtue of choice which is known to inspire hard work in a person who has such choice available in his or her life (terzi 2014; waetjen 2006; wilson-strydom 2011). although the university encourages students with disabilities to disclose their disabilities so that the university can respond to their needs (nul 2015), putting this policy into practice has met challenges. information provided by the students is captured, but admissions are processed without using the data, thus forcing students with disabilities to compete for admission space equally with non-disabled peers. this makes the admission process at the institution unjust for students with disabilities. access can be facilitated if disability data are used at the admission and planning stages. in this study, we argue, as do leathwood (2005) and troyna and vincent (1995), that giving the same treatment to students with disabilities as we do for non-disabled students is not equitable. equity is brought by efforts to compensate social disadvantage of students with disabilities (dworkin 1981). participation of students with disabilities is low because of, among other factors, the failure to make good use of disability data during admission. withholding disability data has negatively influenced the quality of support from lecturers resulting in a reluctance to address, and the denial of, students’ needs. failure to utilise disability data can be attributed to poor planning and consultation between different university units and departments responsible for students’ support. as exemplified above, it took 7 weeks for a deaf student to have a sign language interpreter assigned to her; lerato has mobility challenges, but her classes are set in lecture halls far apart so that she misses part of her lessons; and raphael has to attend classes in storeyed buildings despite having mobility challenges. essentially, students should be consulted about their needs for meaningful access (claiborne et al. 2011), but unprocessed disability data result in exclusion. furthermore, consistent with che’s (2012) finding, there were students with disabilities at institution whom the university did not disclose as disabled. equitable access is also negatively affected by the disability unit’s lack of development over the years. although the unit started in 1999/2009, it has one sena position and caters for one type of impairment. that is, support for students with disabilities is skewed towards students with visual impairments thus limiting support currently provided by the institution. meanwhile, the support provided for students with visual impairments is also deficient: (1) students with visual impairment usually do not know timeously about services institution provides for them; (2) students described existing computers as obsolete and software outdated, an experience that was officially confirmed by sena’s memo to the computer science unit; and (3) the library did not have books in e-text or braille, therefore, the use of computers and internet services was the only means of access to information for the students. thus, students with visual impairments experienced more barriers than their peers with disabilities and non-disabled counterparts. unlike their sighted peers who used library books, journals and other reference materials, students with visual impairments depended on lecture notes they recorded and material they downloaded from the internet. the institution lectures are offered face-to-face, and this study finds the practice unsuitable for students with disabilities. first, the university does not have sufficient resources such as projectors with the result that partially sighted students are forced to cope with lecturers’ handwriting. lessons are fast-paced, and some students are not able to take notes. access to curricula in this context is also denied because of a lack of prescribed books, hence overdependence on lectures. students who fail to copy notes and students with visual impairments are not compensated (dworkin 1981; gewirtz 1998; rawls 1971) with soft or hard copy notes. in addition, the institution does not have a policy which mandates lecturers to accommodate student diversity with the result that some lecturers are either indifferent or intolerant to students’ needs. for example, motse is reluctant to ask for support because some lecturers respond negatively. although one might hope that lecturers would accommodate students of their own free will, and in lieu of such policy, this not being the reality, some policy framework is necessary. to this end, salmi and bassett (2014) state that access is denied when opportunities are insufficient to enable students with disabilities to succeed in their chosen programmes. students’ experiences show a lack of positive discrimination (gewirtz 1998) which would facilitate equity, although there is evidence that attempts in the direction of positive discrimination are clear from the existence of the sesu. in fact, teaching and learning practices at the institution do not meet the basic equality principle of fairness where all have access to the same learning material. lecturers’ lack of commitment to support students with disabilities may also be explained by their limited understanding of how to support students living with various disabilities. findings of the study further indicate that students with disabilities incur costs that their non-disabled peers are spared. they depend on technology to access information and so buy essential hardware such as tape-recorders. our study found that when technology is used, but lecturers do not augment their teaching approaches accordingly, students cannot fully benefit from it. students’ experiences reveal that they felt that they could not influence how their lecturers project their voices or move around the lecture rooms, and nor could they record lesson content successfully. the university could enhance access to curricula if additional time for tests and examinations were provided equitably. accommodations given to students with different disabilities are unsatisfactory to some. consultations between students and staff could, when enabled, address issues surrounding students’ learning experiences. as claiborne et al. (2011) observe, consultations with students living with disabilities give them an opportunity to define their needs. for example, karabo is happy with the time concessions the university gives him but both norma and thomas do not understand how additional time in their tests and examinations was agreed upon as it is too limited. thus, the university fails to respond to the needs of students with disabilities as promised (nul 2015). the teaching–learning facilitation at the hei renders students with disabilities dependent. students with mobility challenges arrive late for classes; those who are physically challenged and cannot copy notes are dependent on peers; and the partially sighted experience similar challenges resulting either from the pace of lessons or lecturers’ illegible handwriting. students with visual impairments also depend on lecturers’ verbal and visual presentations. while karabo says he only learns certain content in discussions leading to examinations, motse says peers are not as clear in explaining concepts as the lecturers themselves. therefore, students are left to catch up on content missed during class during uncoordinated discussions with friends. this leaves students with disabilities not empowered to study on their own and vulnerable to misinterpretation of the content. these students’ experiences demonstrate a lack of access to curricula and equity in the university teaching and learning practices. ethical considerations an ethical clearance procedure was followed with the university of south africa before data were collected, and a clearance certificate was awarded to show that the study met basic ethical standards and posed no threat to the well-being of the participants. permission to conduct the study was sought with the relevant officials of the national university of lesotho, and all participants gave informed consent in writing and agreed to have their voices recorded. participants were guaranteed that their identity would be kept confidential by using pseudonyms in transcription and reports. only the primary researcher, as he did the transcriptions, had access to participants’ voice-recordings. limitations of the study the study has revealed that students with disabilities are not always identified, and disability information is not optimally utilised. consequently, this study was not able to establish the total number of students with disabilities, their retention and graduation rates. additionally, this study only identified lecturers who, at the time of data collection, either taught or were year tutors of the 11 student participants. thus, there are other lecturers whose views are not included but may have taught and supported students with disabilities at the university. conclusion and recommendations this study’s findings offer insights beyond those of matlosa and matobo’s (2007) study which highlighted a lack of training for lecturers and insufficient technology, specifically that there was one computer with internet access in the laboratory for students with visual impairment. we have identified which teaching and learning practices deny students access to learning spaces, and educational attainment, which they desire. we have noted that when disability data are not used profitably, it affects many aspects of access to education such as planning, providing positive discrimination and provision of requisite resources. we have also revealed that support mechanisms such as time concessions in tests and examinations may promote inequity despite being examples of practices that promote access. the study concludes that students with disabilities are admissible, but there are restrictions for students with visual impairments. as access is not limited to entering the university, the university needs to do more to enhance opportunities for students with disabilities to succeed in their studies. such efforts could usefully include a policy on how disability data should be used, and there is currently no leadership, from any department of the university, on how access to the university, its learning spaces and resources, should be provided. the institution only provides acceptable support for students with visual impairment; however, this support is also deficient. students with disabilities have to facilitate their academic survival within the university programmes which ignore their needs. it is therefore recommended that the hei should pronounce itself regarding the practical implementation of regulations pertaining to students with disabilities. specifically, we recommend that a clear policy on support of students with disabilities be developed by universities, with the aids of disabled persons organisations, students, and other key stakeholders. the policy should (1) outline how disability information should be used, (2) describe how different university departments must facilitate students’ support, (3) outline how teaching and learning resources must be enhanced to facilitate access, (4) stimulate research on the success and completion rates of students with disabilities the university enrols and (5) explore ways to adapt programmes currently inaccessible to students with disabilities. although having such a policy would not guarantee the full inclusion and effective participation of students with disabilities in heis, it would be a valuable initial step by providing a reference point and framework for both students and institutions to begin to redress the current imbalances in access. acknowledgements competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions p.a.m. is a doctoral student at the university of south africa who collected, analysed data and made a write-up for the study. n.p. is the supervisor of p.a.m. who made technical and critical inputs to the study. references alkire, s. & deneulin, s., 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‘framing social justice in education: what does the “capabilities” approach offer?’, british journal of educational studies 51(2), 168–187. https://doi.org/10.1111/1467-8527.t01-2-00232 wilson-strydom, m., 2011, ‘university access for social justice: a capability perspective’, south african journal of education 31(3), 407–418. yin, r.k., 1994, case study research: design and method, sage, thousand oaks, ca. article information author: ken j. lipenga1,2 affiliations: 1english department, chancellor college, university of malawi, malawi2english department, university of stellenbosch, south africa correspondence to: ken lipenga postal address: po box 280, zomba, malawi dates: received: 21 aug. 2013 accepted: 21 oct. 2013 published: 01 apr. 2014 how to cite this article: lipenga, k.j., 2014, ‘disability and masculinity in south african autosomatography’, african journal of disability 3(1), art. #85, 9 pages. http://dx.doi.org/10.4102/ ajod.v3i1.85 copyright notice: © 2014. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. disability and masculinity in south african autosomatography in this original research... open access • abstract • introduction • the club of hegemonic masculinity • disability and hegemonic masculinity • spring will come • the language of me • negotiating paths of masculinity • conclusion • acknowledgements    • competing interests • references abstract top ↑ this article examines the representation of disability by disabled black south african men as portrayed in two texts from the autosomatography genre, which encompasses first-person narratives of illness and disability. drawing on extracts from musa e. zulu’s the language of me and william zulu’s spring will come, the article argues that physical disability affects heteronormative concepts of masculinity by altering the body, which is the primary referent for the construction and performance of hegemonic masculinity. in ableist contexts, the male disabled body may be accorded labels of asexuality. this article therefore reveals how male characters with disabilities reconstruct the male self by both reintegrating themselves within the dominant grid of masculinity and reformulating some of the tenets of hegemonic masculinity.between these thighs i am a complete man   between these thighs an equal woman                         i am   between these thighs i can impregnate      and between these thighs i can be                    impregnated                matoto (2010:148) introduction top ↑ this article examines the language of me (2004) and spring will come (2005) by musa zulu and william zulu respectively, in terms of how the narrators negotiate their position in relation to the heteronormative model of hegemonic masculinity. the two texts fall into the genre of autosomatography, a subcategory of the autobiography genre focusing on the disabled or ill body. it is a genre that highlights ‘what it’s like to have or to be, to live in or as, a particular body – indeed, a body that is usually odd or anomalous’ (couser 2009:2). this genre is particularly effective since, firstly, it is an expression of the ‘nothing about us without us’ slogan that has been adopted by many disability activists, which asserts the need for people with disabilities to be part of any decisions made about them. in addition, as a sub-genre of autobiography, these texts are ‘sites of identity production [as they] both resist and produce cultural identities’ (gilmore 1994:4). the memoirs examined here do precisely that, through an articulation of positions that simultaneously challenge hegemonic masculinities and create space for alternative masculinities.focusing on the human body can reveal its position in society as ‘[a text] in which we can read the ideological assumptions of the social system: [as a text] for understanding social institutions, social discourses and social forms’ (meekosha 1998:172). the disabled body illustrates this function by highlighting its resistance to homogenous labels of the norm. as david mitchell and sharon snyder (2000:6) observe, ‘it is the narrative of disability’s very unknowability that consolidates the need to tell a story about it’. to a certain extent, these texts address this need for narrative, particularly as a way of highlighting the intersection of physical disability with hegemonic masculinity. one could relate these narratives to the findings of research conducted by gershick and miller (1997) on the strategies employed by disabled american men to articulate masculinity. the two scholars conclude that in negotiating masculinity, disabled men usually follow three patterns: reformulation, reliance, and rejection – of the values upheld by the dominant masculinity. this ‘three “r” framework’, as the authors call it, is helpful in reading the manner in which william zulu and musa zulu negotiate their masculinity. the club of hegemonic masculinity top ↑ in their book, men’s health and illness, donald sabo and david frederick gordon (1995:10) argue that ‘[t]here is no such thing as masculinity, there are only masculinities’. this statement is supposed to buttress the point that we cannot place all forms of male experience under one label. ‘at any given historical moment,’ they argue, ‘there are competing masculinities – some hegemonic, some marginalized, and some stigmatized – each with their respective structural, psychosocial, and cultural moorings’ (sabo & gordon 1995:10). however, this multiplicity of masculinities is partially informed by ‘a system of internal dominance in which a minority of men dominates the masses of men’ (sabo & gordon 1995:10). this dominant cadre forms what bob connell (1987) calls hegemonic masculinity. one of the variables used to define masculinities is context – they can be read as being ‘society-specific’ (uchendu 2008:3). we are thus able to talk of african masculinity. such masculinity is defined not only by geography but also by attendant cultural factors extant in that physical space. much as this might be the case, even within africa there are different forms of masculinities (ratele 2008b:25). in south africa, for example, according to kopano ratele (2008b:25), ‘a heterosexual patriarchal capitalist masculinity is the hegemonic form of masculinity’. this form of masculinity is hugely sought after by most south african males of all races, and it is characterised by the values of aggressiveness, courage, strength, drive, ambition (career-orientedness) and self-reliance. unsurprisingly, hegemonic masculinity is often held by its adherents as the most proper form. consequently, anyone who fails to evince the required character traits is considered not fully masculine. most conceptions of hegemonic masculinity define and locate it in the male white body (morrell 1998:608; saint-aubin 2005:31), making race one of the factors that often restricts belonging to this elite group. apart from race, however, entrance into the fold – this club – of hegemonic masculinity could be denied on a number of other grounds, including ethnicity, class, sexual orientation or physical disability (gershick & miller 1997:456; morrell 2007:16). it is this category of physical disability as a restricting factor that the article examines, particularly as it is portrayed in the language of me and spring will come. for most disability scholars, the term autobiography is not sufficient to categorise life writing texts by (or on behalf of) disabled subjects. the genre evokes a literary practice that lays emphasis on a certain kind of normalcy (quackenbush 2008:23). hence the turn by scholars such as g. thomas couser (2009:3) to formulate particular sub-genres capturing ‘disability [as] one of the pervasive topics of life writing’. compared to the global north, life writing texts on disability are not common in africa. and even those that exist are not that well known, unless they are on (or by) particularly famous people. most people are at least aware of oscar pistorius’s blade runner (2009) and natalie du toit’s biography, tumble turn (2006), and perhaps the oprah winfrey-narrated documentary emmanuel’s gift (2005). but few people know of esther owuor’s my life as a paraplegic (2000), mongezi ngidi’s black or white: ‘does it matter’ (2005) or even of the oscar-winning short documentary music by prudence (2010). the latter group falls into the category of what lorraine adams (2002) calls the ‘nobody memoir’, life narratives by people who are not already well known prior to the publication of their life stories. these are all life narratives of people with disabilities in africa, and they are amongst texts that engage in ‘the fundamental endeavour to destigmatize various anomalous bodily conditions’ (couser 2009:6). the texts that are under discussion in this paper also fall into this category, since they were not penned by already famous personalities. disability and hegemonic masculinity top ↑ despite the widespread use of connell’s (1987) model of hegemonic masculinity, i agree with stephan f. meischer and lisa a. lindsay (2003:6) who warn that ‘studying masculinity in african situations requires using [the hegemonic masculinity model] with caution’. this very important point realises the problematic nature of assuming the universality of a single model of hegemonic masculinity. this is even more pertinent when it comes to studying representations of black african males who are disabled. interestingly enough, although hegemonic masculinity, as articulated by carrigan, connell and lee (1985) is based on the white male body, most black african male communities often display valorisation of the same values identified in the hegemonic masculinity model (aggressiveness, independence, etc.). in south africa, which forms the setting of the language of me and spring will come, dominant models of masculinity have been affected by the history of the country:hegemonic masculinities in south africa have both formed and been formed by the politics of racialisation. the apartheid state linked to a particular form of capitalist accumulation in south africa provided both the conditions for the social construction of white male identities, and for the formation of masculinities linked to subordinated racialised groups. (unterhalter 2000:162) capitalist accumulation is also drawn from traditional zulu models of masculinity, where, for example, in the early 19th century the accumulation of cattle is important for a man’s reputation as an umnumzana [household head] (hunter 2005:143). in apartheid (and post-apartheid) south africa, this translates into the need for black men to find employment in order to support their families. the problem arises from the way our ableist societies idealise particular bodies, and denigrate others. lenore manderson and susan peake (2005:233) argue that ‘[b]ecoming disabled for a man means to “cross the fence” and take on the stigmatizing constructs of the masculine body made feminine and soft’. values of masculinity are imparted onto both male and female children by various socialising agents in their societies, including their parents, siblings and peers. the same society defines which bodies are to be valued. physically disabled men’s sense of diminished masculinity therefore arises from the bodily valuation that is absorbed as one grows up. spring will come top ↑ william zulu’s spring will come details the author’s experiences from childhood to the present. in the book, the author traces his zulu (2005:1) ancestry back to 1879, ‘the year that effectively marked the end of the great zulu empire and its illustrious kingship’. his disability is the result of two factors: spinal tuberculosis and a misplaced surgical operation in his teenage years, the result of which is paralysis in the lower half of his body. spring will come’s historical and cultural settings are crucial in forming some sense of the models of masculinity that the author draws on. the story spans from the late 1950s to 1994, the year of regime change in south africa. the main events of the story are therefore set in the apartheid era. this setting reflects the narrator’s dependence on masculinity models constructed from interlocking sources. on the one hand, the author’s pride in his culture reflects the influence of traditional zulu models of masculinity. in the early parts of the text, his symbol in this regard is mangosuthu buthelezi, leader of the inkatha freedom party (ifp) and a prominent royal personality amongst the zulu. the narrator writes of him in this fashion: the chief stood for my zulu people far away in the land of the zulus, where i belonged. looking at him, regaled in his traditional skins with shield and assegai, his visionary eyes staring directly at the world, i would feel my blood stir with pride. (zulu 2005:81) on the other hand, living in the poor emondlo township as part of the oppressed, largely impoverished black race, zulu is driven by the need to assert his masculinity through the attainment of a stable source of income and the accumulation of material wealth. as a disabled black man in this society, the pressure to prove his masculinity is even more pressing. the subject of masculinity emerges at several points in zulu’s narrative, mainly associated with a deeply entrenched belief in his sexual undesirability. for the author, the idea of masculinity is strongly tied to perceptions and performances of sexuality. his conservative zulu community further emphasises the link between masculinity and sexuality through its valorisation of men who have sired children (hunter 2006:99). in her introduction to intersectionality in the family, patricia hill collins (1998:63) argues that various systems of oppression usually work ‘mutually’ to ‘construct one another,’ rather than existing independently. her insight is here evoked to assist in understanding the intersection of masculinity and disability, as illustrated in spring will come, where the narrator struggles to recognise his validity as a man. not surprisingly, zulu’s conviction about the unattractiveness of his body takes root whilst he is admitted to hospital, recovering from an operation and undergoing physical therapy. as a space purposefully designed to house those who are either deemed infirm or afflicted with disease, the hospital ward creates – in zulu – a sense of ‘weakness.’ zulu’s sense of diminished masculinity is further emphasised by a nickname he is given by one of the medical orderlies, who teasingly calls him ‘bachelor-boy’. this name arouses mixed feelings in him: although i understood it as well meant by malume, [my nickname] made me conscious of my missing relations with the opposite sex. i would quickly dismiss such thoughts by reminding myself that i was paralysed now and that any relationship was out of the question, yet i still enjoyed watching the young women who came to see the other patients during visiting hours. (zulu 2005:70) this passage reveals the narrator’s belief that his changed body renders him an unsuitable sexual partner. zulu’s long held assumptions regarding the propriety of romantic relationships and (it appears) of sexual encounter present an example of ‘how deeply some men with physical disabilities internalise hegemonic standards of desirability and sexuality which make them complicit in their own domination’ (gershick 1998:199). even after he leaves the hospital, he does not dare engage the opposite sex in any intimate relationships for fear of rejection. an effect which further destabilises the author’s sense of his masculinity in his youth is the sense of infantilisation that emanates from diminished independence brought about by loss of functionality. the ‘bachelor-boy’ tag is a reminder that he might never assume the ultimate status as a man, but is forever condemned to be a ‘boy’ (which incidentally parallels the way the term ‘boy’ was employed by the ruling white minority in denigratory address to black men). subsequent events in the narrative overturn this assumption, but it is important to note the narrator’s assumption of having reverted to childhood as a result of the disability. the author’s thoughts regarding diminished masculinity and infantilisation reveal an unconscious subscription to hegemonic masculinity, where the ideal masculine body is also the able-bodied one. this leads to a sense of isolation, not only from society in general but also from the category of ‘desirable’ men. the statement, ‘i was paralysed now and … any relationship was out of the question’ confirms this conviction. it is further entrenched by the weakening of his christian faith: in his senseless way god had disabled my body and left in it a living heart that yearned, desperately, to love and be loved. if he could listen to my heart, surely he had heard it many times thumping excitedly and silently calling out to a lovely dame, while my eyes drank in her ripe african beauty, wishing i could propose. (zulu 2005:208) this is a passage that effectively illustrates the overlapping of disability with religion and masculinity. in the text, religion (in the form of the christian god as well as ancestral worship and beliefs in witchcraft) is constantly evoked as a way of musing on possible causes of the author’s disability. in the same passage, however, the author touches on the need for love. his expression of this desire evinces a split self. the narrator regards his body as an external part of him, which nevertheless houses a highly sensitive being, a part that is crucial in articulating modes of masculinity that depart form the hegemonic forms. it is this physical part of him – he is convinced – that denies him emotional fulfilment. although the author initially deems himself unsuitable for feminine company, these feelings are born out of an ableist undervaluing of the disabled body. he eventually reads his persistent desire for a woman as an expression of heterosexual masculinity, and realises that the loss of feeling in his legs does not entail a loss of his masculinity. the object of his desire, whom he eventually marries, is lovingly described as a woman: in her mid-twenties, judging by her full, curvaceous figure, [with] a round, light complexioned face with large, clear eyes and a full mouth that pouted tantalisingly, as if ready for a kiss. (zulu 2005:292) there are two important points that emerge from this description. in the first place, it betrays the author’s desire for what can as well be called a hegemonic femininity. secondly, that he is drawn to her due to her physicality indicates a turning point not only in the narrative, but also in his sense of self-worth, reflected in the narrator’s admission that ‘as [he] gazed at her, [he] forgot [his] self-consciousness and [his] disability’ (zulu 2005:292). in this reversal is a clear illustration of the re-establishing of a sense of selfhood. the affection he shares with his wife removes his impression of his body as an impediment to the attainment of a love relationship. remarkably, he describes his wedding day as ‘the day i truly became a man’ (ibid:306) – suggesting a transcendence of both the bachelorhood and boyhood of his aforementioned nickname whilst also validating the idea that his disability does not deny him his masculinity. this statement also reflects the community’s valuation of a man when he finds a wife. in line with gershick and miller’s framework, william zulu’s position also betrays a reliance on the hegemonic, heteronormative masculinity model at this point. in this model, the performance of masculinity involves a stage when the male must conquer the female other, particularly through wooing (shuttleworth 2004:170). as a black man in apartheid south africa, his ability to wed (especially with the bride price of seven cows) is a display of masculine economic muscle, since even in the democratic era, ‘wedlock continues to remain outside the scope of most young men’s financial capacity’ (hunter 2005:149). in spring will come, the articulation of masculinity is not only done through the attainment of matrimony. for william zulu, his masculinity is expressed in other ways, some of them material. for example, after the fateful operation, zulu’s greatest worry concerns the resulting limited mobility. he sees his reliance on a wheelchair as a marker of loss of independence. the need to regain this independence convinces him that ‘[t]he way out of [his] loneliness and isolation was to buy a car and drive away to jo’burg’ (zulu 2005:283). the car would free him from the immobility of disability. significantly, when he eventually obtains the vehicle, he feels ‘in control, driving my own car and somehow feeling master of my own destiny’ (ibid:286). the vehicle restores a sense of autonomy that he felt missing from his life (even though he never moves to johannesburg). his control of the car thus mirrors a re-attainment of control of his own life, and he achieves independence, which is a central requirement of hegemonic masculinity. zulu’s success as an artist also paves way for him to assert his masculinity in two ways. the first is through the improvement in his economic position. with the proceeds from sales of his artwork he has a house built according to his own plans, at the completion of which he feels ‘a man amongst men’ (zulu 2005:187). this fits directly into the value of self-reliance upheld in hegemonic masculinity. more importantly, constructing a house is an expression of a man’s ability to support a family. the ideal male is supposed to be career-oriented and achieve economic independence, usually in order to fulfil what lisa lindsay (1999:784) calls the ‘breadwinner ideal’. this is an ideal that is also emphasised in zulu culture (waetjen & maré 2001:203). for william zulu, this is particularly significant given that in most african communities, ‘people with disabilities are most often severely disadvantaged on the employment market’ (ingstad & eide 2011:5). the ability to gain economic independence therefore emerges as a significant victory when the odds of finding gainful employment are stacked against not only the disabled male, but the majority of black men in south africa (ratele 2008a:529). the narrator’s creativity also opens up another avenue for articulating his masculinity. this is a personalised model in which zulu emphasises his masculinity through various media of expression, including prose and verse, as well as linocut prints. as he hones his artistic skills, he appreciates more and more his mental faculties over his bodily existence: in my isolation as an artist, i understood myself as being made up of two personalities. the first was a creative individual with a lively mind, a sense of fun and a spirit of independence, while the second was a prisoner trapped in an ailing body, which felt like a millstone, dragging me down into an abyss of hopelessness. (zulu 2005:146) the narrator’s words evoke kristin lindgren’s (2004:155) observation that autosomatographical writings often ‘represent subjectivity as split or doubled, as comprising both self and other’. the sense of split identity is informative of why william zulu prefers to emphasise the mind over the body. as an artist, perhaps it can be easily understood why he values his creative faculties a great deal. his linocut prints feature black south africans, usually in various scenes of toil, poverty or some other form of suffering. through them, in acknowledging the plight of black people in south africa, he challenges the idea of the disabled writer as a ‘singular subject’ (mitchell 2000:311). on the contrary, as the author-artist points out in an interview, he sees himself as ‘a social and political commentator through [his] art’ (newman 2011). the writer-artist’s creativity therefore permits him access to other spaces beyond his immediate confines. the freedom and creativity achieved through his artworks opens up a world beyond his home, permitting him to express himself not as a solitary disabled figure, but rather as a citizen of the nation, identifying with other people of his race. this agency, afforded by zulu’s creativity, emerges as a challenge to the limited mobility that his disability represents. the fact that his artworks later gain him access to international audiences further strengthens their enabling potential. the language of me top ↑ musa zulu’s the language of me is a memoir in which he traces phases of his life before and after the car accident which leaves him paralysed from the waist down. the book details the author’s emotional relationship to his new body, highlighting the way he struggles to reject older, ableist ways of regarding disability, and eventually showcases avenues that he discovers which enable him to appreciate the joys of life.the language of me is strictly speaking more of a memoir than an autobiography. this is because instead of tracing a broad range of events in the author’s life, it focuses of a limited, focused set of experiences. as zulu (2004:x) puts it: ‘[the] book is a record of my life between 1995 and 2001, the years of my journey through the light and shadow of disability’. this time-frame sets the book in the early years of post-apartheid south africa, making the context different from that of spring will come. another key difference is musa zulu’s economic situation, which is noticeably better than william zulu’s. at the time of the accident, he has sufficient medical aid to be treated at ‘a private hospital of world-class standard’ (ibid:22), unlike the faith healers, inyangas, sangomas and government-run hospitals that william zulu has to contend with. despite these differences, the influences on musa zulu’s ideas of masculinity are not very different from those of william zulu. he too is influenced by cultural models of masculinity. his zulu ancestry is constantly evoked in this regard. he describes himself as ‘a proud descendant of the house of zulu’ (zulu 2004:105). however, musa zulu’s difference emerges in the fact that he prefers to emphasise the undervalued traits of zulu manhood, ‘never [having] been happy with the stereotypical image that has come to be accorded to [the zulu] people – “aggressive”, “war-mongers”, “uncultured”, and the like’ (ibid:105). in direct contrast to the warrior image so ardently admired by william zulu, musa zulu prefers to distance himself ‘from all the usual clichéd associations – the animal skins, drums, shields and spears’ preferring instead to celebrate ‘the beauty, wisdom and maturity of [his] culture’ (ibid:105). his is therefore a conscious attempt to deny the violence that is normally associated with zulu masculinity. musa zulu (2004) is also influenced by the township culture of masculinity, where he realises: from an early age that part of ensuring a man’s ‘survival’ in the masculine social jungle, and gaining the respect of other boys, lay with the art of attracting women. (p. 96) as a result, prior to his disablement, he has ‘a string of relationships and encounters’ (zulu 2004:95) before settling down. although the politics of the ‘new’ south africa does not affect the author’s notions of masculinity, it nevertheless informs the drive that he has to play his part in transforming the lives of ‘the marginalised black population, whose lives had been badly disrupted by the years of political oppression’ (ibid:15). this motivation later translates into the formation of a support group for the disabled, through which the narrator and his colleagues engage in outreach to other disabled people in hospitals. for both authors, mobility is essential not merely for gaining access to particular spaces, but also as an expression of choice. reflecting on his past in the text, musa zulu (2004:36) observes: ‘i had always been a fast mover – in all senses of the term – delighting in speed, in a race, in outdoing the competition’. mobility is presented in literal terms, referring to movement of his legs, but also metaphorically evoked to represent movement in his career. when he is paralysed, however, he feels that life as he knows it has come to an end: young as i was, i had already accomplished so much in my life and was looking forward to achieving so much more. i was at the peak of my potential, in the process of spreading my wings for still greater heights. my goal was to vault into the skies and shine up there with all the other stars. it was a crushing blow to realise that those big ambitions had died in the week along with the person i used to be … i used to cry a lot during those early days. (ibid:21) one of the most striking aspects of musa zulu’s language is indeed how personal it sometimes becomes (as the title indicates). his pains and losses are expressed in a metaphorically rich and impassioned voice that effectively communicates the experiential from this individual’s unique perspective. in the passage above, the emotion is captured primarily in the emphasis on youth and accomplishment, expressed in the language of upward mobility. similar to william zulu’s language in the early part of spring will come, musa zulu’s language here illustrates the author’s ableist conviction that disability entails failure in every other enterprise in life. like william zulu, musa zulu realises the blow to his masculinity whilst in the hospital space. as a paralysed patient he requires assistance in several respects: one of the most devastating things about paralysis is the way it impacts on normal bodily functions. because i could no longer urinate in the normal way, i had to use a catheter to empty my bladder… i hated that bloody catheter. it became my worst enemy. i found it completely humiliating to have to fiddle with myself, poking about in my penis, trying to insert the tube into the right channel. it was like puncturing the very essence of your manhood, tampering with the core of you. (zulu 2004:23) one unique feature about the autobiographical mode is how it often uses the first person narrative form to draw the reader into intimate spaces. as a result, the reader easily shares emotional experiences depicted by the author. as the passage above clearly indicates, in his conception of self, the disability injures ‘the very essence of [his] manhood […] the core of [him]’ (zulu 2004:23). this indicates another aspect of the self that is directly related to the body. it is a gendered self that has been damaged here, the male self. the penis is the bodily indicator of that self, and the fact that that part is being ‘tampered’ with is another indicator that his essence, the very ‘core’ of him, has been exposed and disabled. for the penis to lose some of its function represents a huge blow to a male human being. as ‘the core of [him]’ the penis is not just another limb, but, to the narrator, the one limb that indicates his masculinity. as the anthropologist robert f. murphy (1987:96) so bluntly put it in the body silent, ‘being a man does not mean just having a penis – it means having a sexually useful one. anything less than that is indeed a kind of castration’. for the male author, the penis represents not only manhood, but actually represents his (male) identity as a person. this is the case in most forms of hegemonic masculinity. for a man to move to a position where the penis no longer figures strongly in his sense of himself as a man requires an adoption of alternative models of masculinity, which are usually in the minority, compared to any form of hegemonic masculinity that may be in vogue in his cultural milieu. the passage on the affected penile function cited above reveals how musa zulu initially views his disability as damaging to his sense of selfhood by reflecting on his changed body. this is seen not only in both the loss of mobility and the exposure of and apparent diminished functionality in a vital bodily part of his male self. the catheter – an appendage – is connected to the penis as the ‘master-signifier’ of masculinity (connell 2001:37), an indication not only of the damaged urinary function, but a blow to the man’s self-esteem. this is echoed on the various occasions in the narrative when the author mentions loss of erectile function. given the centrality of the penis to a man’s self-image, encounters with the opposite sex (assuming a heterosexual inclination, as is evident in musa zulu’s case), especially intimate ones, serve either to emphasise diminished masculinity or to reinforce the existing sense of one’s masculinity. in one study, russell p. shuttleworth (2004:169–170) observes that for disabled men, ‘confronting the dilemma of how to be masculine […] is felt most acutely during their interpersonal attempts to establish sexual intimacy with others’. such encounters create anxiety due to the expectation in the men of a particular kind and ‘level’ of performance. musa zulu narrates an unfortunate experience he had with his girlfriend that highlights this phenomenon. as an indication of his having a diminished sense of self-worth, he convinces himself that it would not be fair to continue his relationship with his girlfriend. he feels he will be a burden to her. however, part of the reason underlying musa zulu’s decision is his anxiety concerning his virility. he explains the reasons behind his decision: it was difficult for her, because i was no longer the man i used to be; it was not just my ability to walk that was lost, but a lot of other things. disability steals away your sexual performance, and with that, your sense of confidence and control. […] i also remember the first night we spent together after i had left the hospital – she said she wanted to be with me. i could not get an erection and when i attempted masturbation to stimulate my penis, it only triggered my bladder and i wet the bed. my god – how it blew me apart! i could have killed myself right there and then. (zulu 2004:31) this passage hardly needs any elucidation, as the narrator’s anguish is clearly and painfully communicated. expressing the belief that he is ‘no longer the man [he] used to be’ is perhaps the most straightforward illustration of musa zulu’s sense of diminished masculinity. furthermore, the passage carries a hint of nostalgia for a past when he had been a more ‘complete man’, who, in his mind at least, was indeed deserving of love and affection. wanting to dismiss his partner is therefore a statement to the effect that he is not only less of a man, but also less of a person, since, it is implied, only a ‘complete’ person is worthy of love. this passage moves the reader to a realisation of the agony that the narrator goes through. the narrator invites the reader into a scene of extreme intimacy and privacy, and then lays bare the humiliating, embarrassing and to him devastating outcome of that encounter. such honesty has the effect of approximating the anguish that the writer feels, further revealing what it means for this particular individual to be disabled, and what this does to his sense of sexual masculinity – what one might term his sexual pride. injury to the spinal cord usually affects a man’s virility because it ‘commonly produce[s] some degree of impotence or sexual malfunction’ (murphy 1987:95). this creates a sense of ‘symbolic castration’ (murphy 1987:96) in men, due to the apparent loss of function in the male member. entry into musa zulu’s thoughts reveals a loss of control over that ‘master-signifier’ of his male being. the fact that he cannot control his penis, in the presence of a woman, seems to confirm the label of a ‘non-man’ that his disability threatens to confer upon him. one of the most persistent ableist myths about disability is the attribution of asexuality, sexual deviance, or hypersexuality to the disabled body (cohen-rottenberg 2012; siebers 2008:138; shakespeare 1999:55). as musa zulu (2004:109) laments in the memoir, ‘so many disabled men find it so difficult to establish relationships with women – society alienates them from their manhood, since it defines them as being less of men’. his book is therefore an illustration of how he confronts some of those misconceptions in his society. similar to spring will come, mobility is evoked in the language of me to describe musa zulu’s need for independence and control of his own life. in both texts, the loss of mobility threatens the man’s membership to the club of hegemonic masculinity since it jeopardises the ideal of independence. for musa zulu, the theme of mobility also finds its way into the very expressions that he employs. for instance, he speaks of wishing to ‘[spread his] wings,’ soaring to the ‘heights’ and ‘vault[ing] into the skies’ in figurative reference to his career dreams. however, mobility in the literal sense is also powerfully presented in the text, particularly with the narrator’s description of his first car, which he was driving at the time of the accident. afterwards, his fear is that he ‘was doomed to a wheelchair’s pace of locomotion forever’ (zulu 2004:24). cars are central to the narrator, not just for their usefulness in transportation, but as representations of (largely masculine) achievement. consider the following passage, where he describes the vehicle: when i first learnt i was paralysed, i was terrified by the thought that my driving days were over. my family showed me photographs of my beloved golf, which i had been driving at the time of the crash. i was horrified by the wreckage i saw and completely devastated by the thought that it had been my first and last car. i had loved that golf like a part of me. i bought it on the 30th of august 1994 and the very next day it emerged from a car audio shop, equipped with an uncompromising sound system. off we went together – a marriage made in boys’ heaven. i cared for that car with absolute dedication, kept it polished, vacuumed and serviced – in mint condition. the two of us had a wonderful relationship that was tragically terminated after only nine months by the collision with the fateful brick wall. we both suffered the heavy blows of impact and my baby was towed away to a scrapyard while i was being wheeled into the icu – two lives forever separated. (ibid:24, [my emphasis]) the vehicle is here described in terms that almost define it as a human being, with whom the narrator has an amazing – though curtailed – relationship. however, the car, together with the sound accessories fitted in, reveal a particularly masculine pleasure, the loss of which zulu later bemoans. couser (1997) observes that: the need to use a wheelchair literally lowers a person’s stature (and implicitly status), and the apparent uselessness of the lower body implies a lack of potency, sexual and otherwise. (p. 184) it is not just mobility that is under threat, but rather a bodily agency that is closely related to masculinity. like the title suggests, musa zulu’s language invokes deeper readings to the narrative. his choice of gendered images and metaphors invites additional perspectives for examining the way the narrator relates to this moment of disablement. for instance, zulu’s description of his feelings towards his vehicle evokes readings which highlight a series of interrelated themes, including masculinity, femininity and rebirth. his relationship with the car is described as ‘a marriage made in boys’ heaven,’ effectively evoking an air of masculine indulgence. however, the ‘marriage’ with his ‘baby’ is ‘terminated only after nine months’. this image replaces the images of masculine pleasure with those that hint at maternity, foreshadowing the rebirth that is to occur after he has been ‘wheeled to the icu,’ through reformulation of masculinity later in the text. this rebirth is further captured in the fact that upon leaving the icu, zulu is heavily dependent on others, before finding his ‘feet’ again – just like a ‘baby’. these gendered images further lay emphasis on the subject of diminished masculinity discussed in the text. the metaphors of termination and rebirth rendered through these images subtly capture the process of the disintegration of one model of masculinity, and its eventual replacement by another. this sense of renewal is captured in the narrator’s belief that the ‘[p]aralysis has cast a little more magic on me and offered me the chance for a new beginning’ (zulu 2004:55). like william zulu, musa zulu’s re-assertion of masculinity draws both on the hegemonic model as well as a personal one. the subject of mobility remains central in his assertion of masculinity, as seen when musa zulu (2004) has the chance to drive a car with hand controls: when i drove that car, it was like heaven had opened its doors for me to come in and rest in peace. i knew then that it was completely possible for me to drive, despite my paralysis, and the new dream i started to embrace right then and there was to get my own wheels and drive myself wherever i wanted to go. (p. 25) once again, the emphasis on driving finds its way into his language. the rediscovery of driving in this context reconnects him to his earlier (masculine) love for cars. after the accident, musa zulu leaves the hospital with ‘only one mission in [his] mind: to recover, whatever it took, get back in the driver’s seat of [his] life again’ (zulu 2004:27). the imagery of ‘rest[ing] in peace’ in this context signifies its opposite connotation – it emphasises the calm, renewed conviction the author has of becoming successful. driving thus becomes a metaphor for regaining control of his life. the title of musa zulu’s memoir has additional significance in relation to the way he regards the intersection between masculinity and creativity. in contrast to the aggression emphasised in hegemonic masculinities, musa zulu (2004:90) reflects the belief that ‘a man’s language, if articulated well and creatively expressed, can paint the colours of his core and reveal the essence of the man in him’. the creative side of men, therefore, is just as capable of expressing their masculinity as their actions are. musa zulu’s prose, poetry and sketches are a manifestation of his conviction that ‘the core of a man is expressed not through his brute strength, but through his tender and creative side’ (ibid:100). it is therefore through the creative mode that the narrator articulates a personal masculinity model. his writings and drawings are acts of enablement not only affording him a voice, but also in permitting him a unique articulation of his masculine self. negotiating paths of masculinity top ↑ as the discussions above illustrate, the authors of spring will come and the language of me engage in a negotiation of masculinity that simultaneously relies on and reformulates some aspects of hegemonic masculinity. what emerges is not necessarily a novel model of masculinity, but rather a position that re-asserts the subject’s belonging to the elite club, whilst also emphasising some normally marginal aspects of hegemonic masculinities. the ableist rejection of masculinity in connection to the disabled body is therefore on the limited grounds of the ideal masculine body, which hardly even exists. this entails that the denial of the disabled body within the realm of hegemonic masculinities is more a feature of ableist attitudes than anything else.one important feature of the texts – besides the stories contained therein – is the importance of the actual mode of expression that is the written memoir. if we shift focus to the act of narrating the story, the texts can be identified as acts of enablement, through their according of agency in giving the author a voice. the life writing genre permits the speaker to engage directly with the public, and potentially change stereotyped views held by that public: intentionally or not, and whether positively affirmed or contested by our audience, our autobiographical accounts become entwined in struggles about justice. we use these accounts to hold up to public scrutiny the values informing our lives and those of other protagonists. in doing so, we appeal for recognition of individual and collective identities. (coullie et al. 2006:2) from this statement, the genre of autosomatography can destabilise misconceptions that the ableist public may hold about disability and masculinity. that is part of the intention of the writers. in the introduction to his book, for instance, musa zulu (2004:x) points out that his writing is an attempt ‘to show the world that “disability” is not only a story to tell to others, but also a site of talents that deserve to be uncovered and exhibited’. through their acts of creativity, these men discover cracks in the boundaries of hegemonic masculinity, and invent ways of simultaneously aligning with dominant models of masculinity and asserting their own personalised masculinities. conclusion top ↑ in ending the discussion, i wish to briefly reflect on the strategies of these two authors in re-negotiating their masculine selves. gershick and miller’s (1997) study of disabled american men yields some similarities to the strategies adopted by musa zulu and william zulu. from the evidence given above, both narrators do not reject dominant models of masculinity, but rather engage in both reliance and reformulation of such models. as indicated above, various behavioural traits and preferences indicate a reliance on certain hegemonic masculinity ideals. reformulation entails a definition of masculinity along new lines, previously not emphasised. this is evident in both narrators’ emphasis on their creativity. however, the two authors also reposition themselves within the dominant frame of masculinity, through their emphasis on one key aspect of masculinity – independence. this is expressed through their need for (and acquisition of) mobility, achieved through their vehicles. and like most males, they also take pride in economic independence. however, the two texts analysed in this essay feature men with similar disabilities. it would therefore be interesting, for future research, to investigate the manner in which other disabling conditions can affect perceptions (and constructions) of masculinity.much as gershick and miller’s study helpfully categorises common strategies of disabled men with regard to masculinity, one must note the limitation that the study has in the sense of having a limited sample that comprises only american men with disabilities. we must allow for the effect of socio-cultural factors in shaping masculinities particular to certain locations. in the present study, the south african historical and political context has a bearing on the way the authors see their place in society. similarly, their zulu cultural background is a factor that cannot be ignored in the attempt to determine influences on their ideas of masculinity. paying heed to these factors not only allows for a better informed analysis of masculinity, but also of disability in this context. acknowledgements top ↑ the author would like to thank dr grace musila and dr timwa lipenga for their feedback on early drafts of this article. competing interests the author declares that he has no financial or personal relationship(s) that may have inappropriately influenced him in writing this article. references top ↑ adams, l., 2002, ‘almost famous: the rise of the “nobody” memoir’, in washington monthly, viewed no date, from http://www.washingtonmonthly.com/features/2001/0204.adams.html carrigan, t., connell, b. & lee, j., 1985, ‘toward a new sociology of masculinity’, theory and society 14(5), 551–604. http://dx.doi.org/10.1007/bf00160017 cohen-rottenberg, r., 2012, ‘caught inside a paradox: how cultural representations perpetuate disability stigma’, in disability and representation: changing the cultural conversation, viewed no date, from http://www.disabilityandrepresentation.com/caught-inside-a-paradox-how-cultural-representations-perpetuate-disability-stigma/ connell, r.w., 1987, gender and power: society, the person, and sexual politics, stanford university press, stanford. connell, r.w., 2001, ‘the social organization of masculinity’, in s.m. whitehead & f.j. barnett (eds.), the masculinities reader, pp. 30–50, polity press, cambridge. coullie, j.l., meyer, s., ngwenya, t.h. & olver, t., 2006, ‘introduction’, in j.l. coullie, s. meyer, t.h. ngwenya & t. olver. 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http://dx.doi.org/10.1080/09578810008426770 waetjen, t. & maré, g., 2001, ‘“men amongst men”: masculinity and zulu nationalism in the 1980s’, in r. morrell (ed.), changing men in southern africa, pp. 195–206, university of natal press, pietermaritzburg. zulu, m., 2004, the language of me, university of kwazulu-natal press, pietermaritzburg. zulu, w.n., 2005, spring will come, university of kwazulu-natal press, scottsville. abstract introduction methods review findings discussion conclusion acknowledgements references about the author(s) tumisho mokwele department of nursing, faculty of health sciences, university of pretoria, pretoria, south africa ramadimetja shirley mooa department of nursing, faculty of health sciences, university of pretoria, pretoria, south africa nombulelo v. sepeng department of nursing, faculty of health sciences, university of pretoria, pretoria, south africa citation mokwele, t., mooa, r.s. & sepeng, n.v., 2025, ‘community perceptions towards children living with albinism in africa: an integrative review’, african journal of disability 14(0), a1718. https://doi.org/10.4102/ajod.v14i0.1718 review article community perceptions towards children living with albinism in africa: an integrative review tumisho mokwele, ramadimetja shirley mooa, nombulelo v. sepeng received: 15 mar. 2025; accepted: 15 sept. 2025; published: 31 oct. 2025 copyright: © 2025. the authors. licensee: aosis. this work is licensed under the creative commons attribution 4.0 international (cc by 4.0) license (https://creativecommons.org/licenses/by/4.0/). abstract background: community perceptions of children with albinism often influence their inclusion, safety and access to education, violating their basic human rights. children with albinism in africa encounter social challenges because of myths, superstitions and discrimination because of a lack of knowledge about albinism, making it difficult for the mother who has given birth to a child with albinism. objectives: to synthesise the existing literature on community perceptions of children with albinism in africa. method: an integrative review process was used, which involved five steps to review the literature: problem identification, literature search and data collection, data evaluation, data analysis and presentation of findings. electronic searches were performed in multiple databases, including ebscohost, pubmed, scopus, web of science, google scholar, proquest and grey literature. results: community perceptions of children with albinism are embedded within their cultural beliefs and spirituality. children with albinism continue to be alienated in their communities as their existence is associated with shame, judgement from god or ancestors and superpowers. conclusion: awareness campaigns should be continuous in communities to dispel the myths surrounding albinism. this can be achieved by involving community leaders, religious organisations and organisations that advocate for people with albinism to ensure that our communities create a safe environment for these children. contribution: this review may help understand perceptions of albinism and may assist in developing community-based interventions to support caregivers of children with albinism. keywords: albinism; children; culture; community; perception. introduction albinism is a genetic condition characterised by a lack of melanin production, resulting in distinctive features such as light skin, hair and eyes, which may cause visual impairment (kromberg & manga 2018). while the biological aspects of albinism are well documented, societal perceptions of the condition differ, as they are widely influenced by culture. cultural perceptions of albinism may differ depending on historical, social, religious, cultural and environmental factors (kajuri & nyimbi 2020). the prevalence of people living with albinism is estimated to be 1:17 000 worldwide, with sub-saharan africa accounting for 15 000 and south africa accounting for 1:3900 (kromberg & kerr 2022). in 2006, the united nations played a significant role in adopting the convention on the rights of persons with disabilities (crpd). the crpd aims to protect and ensure that people with disabilities enjoy equal human rights and freedom (united nations 2008). although people living with albinism are a minority in south africa, the constitution has ensured that their rights are not excluded; therefore, there is legislation for non-discrimination against people with disabilities (mswela 2018). mswela (2018) further noted that legislation such as the promotion of equality and prevention of unfair discrimination act, employment equity act 19 and labour relations act ensure that laws for people with disabilities are implemented and protected. the recorded history of albinism (hilton 2021) was confined to myths (bradbury-jones et al. 2018; kromberg & manga 2018) and beliefs, which either saw people living with albinism as a curse or a result of disrespecting the ancestors and therefore seen as a punishment (taylor et al. 2021). as a result, people living with albinism are still seen as subhuman, with their rights disregarded and mistreated (bradbury-jones et al. 2018). dapi, tambe and monebenimp (2018) emphasised in their work that people with albinism are prone to experiencing attacks and prejudice. there are harmful myths that suggest that sleeping with a person with albinism can bring them luck and that mutilating them can make one rich (daklo & obadire 2024). these myths and attacks, according to masanja, imori and kaudunde (2020a), stem from a lack of knowledge and negative attitudes towards albinism among people with lower literacy levels. however, other gruesome acts recorded towards people living with albinism have been committed by educated people, as was the case in witbank, south africa, in 2018, where the perpetrator was a schoolteacher (njilo 2019). african countries, through the african union, adopted the regional action plan in 2019 to reduce brutality against people with albinism and promote inclusivity (ero et al. 2021). according to the legal and human rights report (2019), in tanzania, the regional action plan has enabled countries to put the spotlight on the challenges people with albinism face and therefore enabled them to establish stricter laws against perpetrators who attack people with albinism. this regional action plan has been adopted in south africa, leading to increased awareness and advocacy; however, more can still be done to ensure the safety and security of people with albinism. several studies have investigated the challenges and experiences of people with albinism in africa; however, limited research has focused on the perceptions of community members in africa. therefore, this review seeks to synthesise the available literature regarding community members’ perceptions towards children with albinism in africa by searching published and grey literature. methods an integrative review is a comprehensive methodological approach that combines data from theoretical and empirical literature (souza, silva & carvalho 2010:103) to determine what is known about the subject matter to generate a new perspective and framework (russell 2005). this review utilised the whittemore and knafl (2005) approach, which uses five steps to review the literature: problem identification, literature search and data collection, data evaluation, data analysis and presentation of findings. figure 1 illustrates the steps followed in this study. figure 1: integrative review process. step 1: problem identification caregivers of children with albinism frequently experience societal stigmatisation following the birth of their child with albinism (baker et al. 2021). they are accused by those around them of having extramarital affairs or of sleeping with a white man (ero et al. 2021). this may result in the caregiver being abandoned by their partner or being divorced, as the partner does not want to bear the stigma of having a child with albinism, causing the caregiver to raise the child alone (kajuri & nyimbi 2020). according to steyn (2022), caregivers are left with only the choice of abandoning or killing their children to avoid being victimised by the family and the community. consequently, those who choose to raise children with albinism often encounter challenges because of inadequate community support and exclusion (owoeye et al. 2023). the research question was formulated using the adapted population, interest and outcome (pio) framework (methley et al. 2014): p – population: the population include community teachers, relatives, and mothers. i – interest: the interest involves perceptions, attitudes, and knowledge. o – outcome: the outcome refers to perceptions of the community towards a child with albinism. therefore, the following review question was formulated: what is the available information in the literature about the perceptions of a community towards children with albinism in africa from july 2013 to august 2024? this period was selected as the first author anticipated obtaining recent and relevant reports and studies related to the topic. step 2: literature search the literature search is a fundamental step in an integrative literature review to ensure that the search is performed thoroughly and comprehensively (whittemore & knafl 2005). the search was conducted to identify, analyse and synthesise results from primary studies to determine the information available on the perceptions of a community towards children with albinism. the literature search was conducted by the first author with the assistance of the librarian responsible for the health sciences faculty between 2023 and 2024. the electronic databases searched were cochrane, scopus, pubmed, ebscohost, medline, google scholar and government and non-governmental organisations’ websites to ensure that a comprehensive search was conducted. the following mesh terms were used to search for literature on electronic databases: (‘albinism’ or ‘albino’ and ‘community’ or ‘family’ or ‘relatives’ or ‘neighbours’ or ‘children’) and (‘perception’ or ‘knowledge’ or ‘attitude’) and (africa or angola or benin or botswana or ‘burkina faso’ or burundi or ‘cabo verde’ or cameroon or ‘central african republic’ or chad or comoros or congo or ‘cote d’ivoire’ or ‘equatorial guinea’ or eritrea or eswatini or ethiopia or gabon or ‘gambia, the’ or ghana or guinea or ‘guinea-bissau’ or kenya or lesotho or liberia or madagascar or malawi or mali or mauritania or mauritius or mozambique or namibia or niger or nigeria or rwanda or ‘sao tome and principe’ or senegal or seychelles or ‘sierra leone’ or somalia or ‘south africa’ or sudan or tanzania or togo or uganda or zambia or zimbabwe or morocco or algeria or tunisia or libya or egypt or ‘western sahara’). the boolean operators ‘and’ and ‘or’ were used to combine the concepts. the electronic search yielded 338 published studies, seven citation sources and five grey literature items from non-governmental organisations. these studies were then transferred to covidence. duplicates were removed using covidence software, and 190 studies were screened, of which 42 were eligible; however, 33 studies were excluded because of inappropriate study design, population and setting. therefore, nine studies were included in this review. the first author and the second author completed the screening process to identify relevant studies. this process was performed using the preferred reporting for systematic reviews and meta-analysis table (prisma), as illustrated in figure 2. figure 2: preferred reporting for systematic reviews and meta-analysis flow diagram. inclusion and exclusion criteria the review included primary studies, secondary studies, qualitative, quantitative and mixed-methods design as well as grey literature published from 2013 to 2024. the population had to be a community with concepts related to their perceptions, attitudes and responses towards children with albinism. the studies had to be conducted in africa and written in english. step 3: data evaluation the data evaluation stage includes critically assessing the quality of the primary and grey literature selected to evaluate their strengths and weaknesses (whittemore & knafl 2005). the quality of the data was evaluated using a 10-question critical appraisal skills programme (casp 2018) for qualitative and quantitative research. the following criteria were used to critically appraise research papers: having a clear aim, appropriate methodology, appropriate research design, clear data collection process, ethical considerations, applied rigorous data analysis and clear findings, limitations and recommendations. the mixed-methods appraisal tool (mmat 2018) was used for mixed-methods studies. the following criteria were used to assess mixed-methods studies: a clear rationale for employing mixed-methods, integration of different components, adequately interpreted qualitative and quantitative components, divergences and inconsistencies between qualitative and quantitative results addressed and the components of the studies adhering to the quality criteria of the methods involved. step 4: data analysis the data extraction format used was adapted from souza et al.’s (2010) data extraction table. the table indicates the characteristics of the studies eligible for extraction, consisting of the author’s name, year and place where the study was conducted. it also includes the aim of the study, research methodology, population, data collection methods and findings (table 1). nine studies were eligible for inclusion and were extracted. the characteristics of the study are presented in table 1. table 1: data extraction table. data analysis is the process of consolidating separate data points by reducing them into a coherent statement about the research problem (russell 2005). this process involved extracting relevant findings from the reports using a standardised data extraction tool (oermann & knafl 2021). the extracted data were systematically analysed to uncover recurring themes by using thematic analysis to identify trends across the study, following braun and clark’s (2021) six steps for thematic analysis. ethical considerations this review is part of a doctoral study aimed at developing community-based interventions for caregivers of children with albinism. ethical clearance was granted by the university of pretoria research ethics committee (reference number: 444/2024); however, human participants were not included in the review. review findings the results of this review are presented in a narrative format. the review resulted in two main themes: cultural and social perceptions. table 2 illustrates the themes and sub-themes prevalent in the literature evaluation. the following is an outline of each of these themes and their corresponding sub-themes. table 2: outline of identified themes and sub-themes. theme 1: cultural perceptions cultural underpinnings shape the way a community defines, understands and perceives children with albinism within their cultural context. the cultural underpinnings are described below: cultural beliefs, myths and superstitions and violence. sub-theme 1.1: cultural belief cultural beliefs surrounding albinism are complex and often contradictory, indicating how people fear and revere albinism. they often regard people with albinism as spirit mediums (machoko 2013). other communities perceive people with albinism as not fully human, believing that they do not die but disappear (diale 2021), or that they are spirit mediums who are connected to powerful forces like the mwari cult, able to cause the rain to fall (machoko 2013). some perceive them as aquatic beings, ‘mermaids’ or ‘water gods’, possessing healing powers (machoko 2013). owing to cultural beliefs, a child born with albinism is named depending on or according to the family situation (tambala-kaliati et al. 2021). therefore, for children with albinism, they may be named ‘mabvuto’, which means ‘trouble’ as a way of expecting what is to come. communities ostracise and see them as a curse, which demonstrates the tension between cultural beliefs and the reality that people with albinism face. furthermore, they are forbidden from being married (machoko 2013) and are instead used for ritualistic sexual practices for the benefit of chiefly lineages. this belief disregards their existence as human beings and indicates that their birth is largely dictated by shame or misery. sub-theme 1.2: mythology and superstitions communities have deeply entrenched myths and superstitions surrounding albinism that promote harmful misconceptions and discriminatory practices. caregivers are mostly blamed for giving birth to a child with albinism (veldman 2019), which is seen as a punishment from god or the result of being supernaturally impregnated by ghosts (bradbury-jones et al. 2018). albinism is often believed to be contagious (bradbury-jones et al. 2018) or a result of witchcraft, and people with albinism are believed to carry bad luck (masanja et al. 2020a) or are linked to ghosts. these beliefs fuel horrific acts, including the killing of newborns with albinism and the use of their body parts for ritualistic purposes (machoko 2013, 2020). the belief that their body parts possess medicinal or spiritual powers encourages practices such as ritualistic sexual intercourse for healing, wealth and ancestral blessings (machoko 2013). the studies extracted indicated that communities often thought that people with albinism were diamonds and therefore put a price tag on their body parts (masanja, imori & kaudunde 2020b). this perception perpetuates the culture of violence against children with albinism. the birthing attendants report that babies born with albinism are killed at birth and their bodies buried together with water plants along the riverbanks to send their spirits to the water source (machoko 2013; masanja et al. 2020a). this violence is driven by myths, indicating a disregard for human life and dignity and thus transforming people with albinism into commodities for exploitation and ritualistic abuse. such myths and superstitions perpetuate an environment of fear and violence, dehumanising people with albinism and marking them as something other than human. theme 2: social perceptions social perceptions of albinism are significantly shaped by cultural contexts and misconceptions. people’s perceptions lead to stigma, as albinism is associated with witchcraft, superstition or a curse. because of a lack of knowledge and understanding, the discrimination and stigma that people with albinism face leads to social isolation and, therefore, foster fear and prejudice against them. therefore, discrimination, stigma and lack of knowledge are outlined below. sub-theme 2.1: discrimination and stigma the lives of people with albinism are mostly impacted by persistent stigma and discrimination within their communities. fear, misinformation and deeply rooted myths foster an environment of social exclusion, where children born with albinism are not celebrated but rather feared and pitied (bradbury et al. 2018; masanja et al. 2020b; veldman 2019). the general reaction to the birth of a child with albinism is one of negativity, blame, fear and disappointment, highlighting a deep-seated prejudice that prioritises difference over appreciating humanity (likumbo et al. 2021; masanja et al. 2020a; taylor et al. 2021). therefore, families are often mocked and socially isolated, with mothers bearing the blame and suffering from psychosocial distress (likumbo et al. 2021; tambala-kaliati et al. 2021; taylor et al. 2021). children are denied educational opportunities, kept at home because of fear of being abducted and subjected to constant scrutiny and negative reactions (likumbo 2021; masanja et al. 2020b; tambala et al. 2021). veldman (2019) reported that this negative reaction causes psychological stress and isolation; however, even after educational interventions, communities continue to stigmatise people with albinism (veldman 2019). schoolchildren and teachers have misconceptions about albinism being contagious, leading to calls for children with albinism to be segregated. sub-theme 2.2: lack of knowledge a lack of knowledge about albinism within communities influences harmful misconceptions and discriminatory practices. this ignorance manifests in various ways, from communities having different perceptions of what causes albinism; for example, previously, communities thought that ghosts caused albinism (baker et al. 2021). this thinking caused them to be fearful when they saw a child with albinism, leading them to think that albinism is contagious and to seek children to be taught in different classes (bradbury et al. 2018; veldman 2019). because of a lack of understanding from communities they reside in and the schools they attend, children with albinism often feel lonely and lack a sense of belonging (likumbo et al. 2021). therefore, it can be concluded that deep-seated cultural beliefs act as barriers to accurate information, hindering a clear comprehension of the condition. discussion this review aimed to synthesise the existing literature on community perceptions of children with albinism. the review findings indicated that community perceptions are culturally informed; therefore, cultural beliefs, mythology and superstitions, discrimination and stigma and lack of knowledge will be examined. the studies included in this review were conducted in africa; therefore, african cultural beliefs play an important role in shaping their thinking and how they see the world around them (ned 2022). lukalo and maseno (2025) found that africans have a negative view of disability; as a result, a child born with a disability is seen as a curse. this view is supported by imafidon (2017), who identified that african ontology isolates those with unusual natures and therefore treats them differently. therefore, this view provides evidence of the complexities within which children born with disabilities find themselves. the belief that people with albinism have superpowers indicates the cultural significance attributed to their existence by communities, as it suggests that they possess unique powers. this perspective may seem positive; however, imafidon (2017) expressed that it poses a threat as it reduces their being to their ‘sacredness’ and not being accepted and appreciated as human beings who have their own identities. these views often lead to people with albinism being marginalised out of fear by communities. in african culture, names given to children are influenced by the family’s circumstances, including albinism. by framing their birth in terms of cultural stereotypes and shame, communities reinforce harmful stereotypes (moasun & mfoafo-m’carthy 2021), making it difficult for them to be accepted by communities. this was supported by steyn (2022:13), who sought to examine the reasons and causes of prejudice and the consequences of negative designations that stigmatise and victimise people with a form of albinism. the study explained that derogatory nicknames were used to define skin colour such as being called ‘ghost’ or ‘inkawo’ in isixhosa. this can lead to psychological and social implications for people with albinism, leading to isolation. cultural beliefs and practices against children with albinism violate their human rights; therefore, addressing these beliefs is important to ensure an inclusive environment for them. myths influence perceptions and, ultimately, how children with albinism are treated in different cultures. in certain communities, albinism is viewed through the lens of mythical beliefs, where people with albinism are seen as spirit mediums, possessing a level of spiritual power. daklo and obadire (2024) acknowledged that, though myths may cause the community to have a sense of reverence towards people with albinism as they are seen as gods assigning a ‘higher’ level of social standing to children with albinism, they simultaneously reinforce their marginalisation. superstitions also contribute to the growing misconceptions, as communities believe that people with albinism do not die. according to aborisade (2021), the belief that children with albinism possess magical powers can lead to violence and, at times, death, as they are easy targets (mswela 2017). kajuri and nyimbi (2019) explained that the belief that people with albinism can bring wealth and health is solely dependent on a person with albinism being mutilated or being sexually violated to cure the perpetrator from an ailment. this indicates a deep-rooted problem and the acceptability of violence motivated by cultural beliefs. the people with albinism report by ero et al. (2021) found that children with albinism are discriminated against and stigmatised outside and inside of school, creating a barrier to their development, social integration and well-being. similarly, this was the case in a study by brocco (2015), who found that they experience verbal abuse, whereby they are called names such as ‘mwari’ and ‘lekgowa’ and other derogatory names. these often increase the chances of bullying children with albinism. ringson (2018:13) found that discrimination and stigmatisation take place in communities as there is no cohesion and therefore recommended the creation of a community-based protection model to protect children with albinism. the right to accessible and inclusive education for children with albinism, as stipulated in the sustainable development goals (sdg 2030), goal 4, is violated by schools, as they are not willing to teach children with albinism in mainstream schools. hammond (2020) found that teachers’ unwillingness to integrate children with albinism into mainstream education perpetuates a cycle of exclusion and indicates a systematic barrier they encounter. this was supported by dapi et al. (2018) and daklo and obadire (2024), who further identified that discrimination and the stigmatisation of children with albinism, reflect the broader societal attitudes that marginalise them and foster feelings of inferiority, leading to bullying and negatively impacting their mental health. however, a thematic analysis by alizadeh et al. (2024), which focused on psychological experiences and support resources for people with albinism, found that teachers served as a source of support for students with albinism. although this view contradicts prior studies (daklo & obadire 2024; dapi et al. 2018; hammond 2020), it indicates that when teachers are well capacitated, they can support students with albinism and foster an inclusive environment. a study by kajuri and nyimbi (2020) aimed at describing the impact of myths and superstitions for people with albinism in tanzania found that the lack of sound knowledge, an information gap allowed misinformation, myths, superstitions and prejudice to thrive. this was supported by imafidon (2022), who reiterated that lack of knowledge is created by different factors such as lack of epistemic access, the tendency to hold on to beliefs and the quest to defend and sustain them. kajuri and nyimbi (2020) further recommend that the community be educated on the medical and genetic causes of albinism. as a result of advancements and the availability of information, it can therefore be deduced that the greatest cause of the lack of knowledge is holding on to cultural traditions and ignorance. stereotyping thrives when communities do not take it upon themselves to learn. the lack of knowledge, along with cultural beliefs related to albinism communities, may lead people to see people with albinism as threats and therefore lead to social exclusion, stigmatisation and even violence. conclusion this review synthesised the existing literature on the perceptions of communities regarding children with albinism. the findings indicate that african culture and traditions influence how children with albinism are perceived. cultural perceptions indicate how cultural beliefs, myths and superstitions perpetuate harm and violence towards children with albinism. societal perceptions perpetuate discrimination, stigma, exclusion and violations of their fundamental human rights. comprehensive educational initiatives, community outreach, advocacy efforts and the active involvement of community leaders aligned with the sdgs are required to address cultural and societal perceptions. this can be achieved by fostering awareness and understanding, and communities can work towards reducing stigma and discrimination, creating a supportive environment for people with albinism. future research should focus on developing community-based protection models to ensure that children with albinism are raised in safe environments. limitations and strengths of the review this review was limited to studies that focused on the perceptions of community members towards children with albinism in africa. only studies conducted in english were included; therefore, studies conducted in other languages, but which were relevant, were excluded. the reviewers conducted a comprehensive search of the included databases; however, some studies may have been omitted. acknowledgements the authors would like to thank mr morero and ms siebane from the university of pretoria healthcare sciences library for their assistance in searching the literature. this article is based on research originally conducted as part of mokwele tumisho’s doctoral thesis titled ‘developing community-based interventions to support caregivers of children with albinism in south africa’, submitted to the nursing department, university of pretoria in 2025. the thesis is currently unpublished and not publicly available. the thesis was supervised by ramadimetja shirley mooa and nombulelo veronica sepeng. the manuscript has been revised and adapted for journal publication. the author confirms that the content has not been previously published or disseminated and complies with ethical standards for original publication. competing interests the authors reported that they received funding from the canadian health research institute, which may be affected by the research reported in the enclosed publication. the authors have disclosed those interests fully and have implemented an approved plan for managing any potential conflicts arising from their involvement. the terms of these funding arrangements have been reviewed and approved by the affiliated university in accordance with its policy on the objectivity of funded research. authors’ contributions t.m. performed the article search, analysis and the write-up for the manuscript. r.s.m. and n.v.s. supervised, reviewed and revised the final article. funding information this research was funded by the canadian health research institute (grant number a1g248). data availability the author confirms that the data supporting this study and its findings are available within the article and its listed references. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the 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https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities&ved=2ahukewj06ocahbsoaxw8seeahz-pm3gqfnoecb0qaq&usg=aovvaw3baeaitj-cojlqbdurd14l. veldman, m., 2019, breaking the stigma of albinism: an assessment of two radio-based interventions to improve knowledge and reduce stigmatising attitudes related to albinism in tanzania, radboud university nijmegen, nijmegen. whittemore, r. & knafl, k., 2005, ‘the integrative review: updated methodology’, journal of advanced nursing 52(5), 546–553. https://doi.org/10.1111/j.1365-2648.2005.03621.x abstract introduction literature review employment experiences for persons with visual impairment theoretical framework the current study research methods and design results discussion limitations conclusion acknowledgements references about the author(s) kelao uiras department of psychology and social work, faculty of health sciences and veterinary medicine, university of namibia, windhoek, namibia nisha a. paulse department of psychology and social work, faculty of health sciences and veterinary medicine, university of namibia, windhoek, namibia annelisa murangi department of psychology and social work, faculty of health sciences and veterinary medicine, university of namibia, windhoek, namibia optentia research unit, faculty of humanities, north-west university, vanderbiljpark, south africa clifford k. hlatywayo department of psychology and social work, faculty of health sciences and veterinary medicine, university of namibia, windhoek, namibia citation uiras, k., paulse, n.a., murangi, a. & hlatywayo, c.k., 2024, ‘employment challenges for persons with visual impairment in windhoek, namibia’, african journal of disability 13(0), a1500. https://doi.org/10.4102/ajod.v13i0.1500 note: the manuscript is a contribution to the themed collection titled ‘evidence informed action in promoting disability inclusion in africa,’ under the expert guidance of guest editors dr michelle botha and dr callista kahonde. original research employment challenges for persons with visual impairment in windhoek, namibia kelao uiras, nisha a. paulse, annelisa murangi, clifford k. hlatywayo received: 15 june 2024; accepted: 30 aug. 2024; published: 30 oct. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the greatest challenge for persons with disabilities is that of securing and maintaining employment, because of the limitations associated with being visually impaired. objectives: this study aims to explore the employment challenges of securing and maintaining employment faced by persons with visual impairments. method: a qualitative research approach with an exploratory research design was employed. a non-probability sampling method using the snowball sampling technique was adopted. a semi-structured interview was conducted with a total of n = 9 participants, and the data were analysed using the thematic analysis method. results: the findings indicate that persons with visual impairment continue to face adverse challenges, especially in the quest of securing employment. discrimination, isolation, rejection and lack of recognition are key issues that continue to persist in their life experiences, from the tertiary to post-tertiary level. conclusion: persons with visual impairment need continued support from various stakeholders as far as employment opportunities are concerned. there is a need to sensitise stakeholders, at all levels, on the challenges encountered by persons with visual impairment in their employment journey for effective inclusion and diversity management. contribution: the findings can aid in the development of an all-round model of support and optimal functioning for persons with visual impairment from grassroots level to post-tertiary education and in workplaces. keywords: seeking employment; maintaining employment; persons with visual impairment; windhoek; namibia. introduction article 27 of the un convention on the rights of persons with disabilities (uncrpd) (un convention 2006) establishes that state parties should recognise the right of persons with disabilities to work on an equal basis with others. similarly, the namibia government gazette (1998) advocates strongly for an equitable representation of persons with disabilities in the workplace. however, despite these efforts, the employment for persons with disabilities in namibia remains a challenge (namibia statistics agency 2016). this could be because most employers are reluctant to employ persons with visual impairment because of the reasonable accommodation expectations that come with it (brunes & heir 2022). the goal of reasonable accommodation in the workplace is to allow persons with disabilities to perform their official tasks while also enjoying a non-discriminatory and inclusive environment (uncrpd 2006). for persons with visual impairment, the challenge not only lies in successfully completing tertiary education, but also in securing and maintaining employment. as a result of limitations associated with each disability, there is a notable disparity in the employment rates between individuals with impairments and those without. according to the world report on disability (2011), persons with disability have a disproportionately lower employment rate (44%) compared to those persons without a disability (75%). severity of visual disability (with imposed functional limitations), and levels of education also contributed significantly to whether persons with visual impairments secured employment or not (ebuenyi et al. 2020; lund & cmar 2019). it can be argued that higher levels of education imply that an individual with visual impairment can read braille, and as such can be accommodated in workplaces where such reasonable adjustments are prioritised. the ability to be employable and engage in paid work is important for many individuals, including those with disabilities (moerdyk et al. 2020). unemployment for persons with disabilities leads to increased poverty rates as well as increased dependency and less legal protection compared to persons without disabilities (ikela 2019). it is evident in disability-related literature that profitable employment possibilities are necessary for self-fulfilment, personal autonomy, identity and status (antonelli, o’mally & steverson 2018a; capella mcdonnall, zhou & grudden 2013; nagle 2001). having paid employment allows persons with visual disabilities to experience a higher quality of life, with a high self-reported life satisfaction and reduced levels of depression (brunes & heir 2022). a lack of income or none, may also be indicated by the difficulty to find employment in the labour market, which further erodes one’s ability to meet fundamental basic needs, such as clothes, food, housing and access to postsecondary education services. as such, employment is important for people with disabilities as it not only provides financial assistance but may also provide access to better health care, improve living arrangements, promote self-reliance and reduce dependency (antonelli, steverson & o’mally 2018b). the term, disability, according to the un convention on the rights of persons with disabilities (uncrpd 2006): [i]ncludes those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. (p. 4) in the context of the current study, the word visual impairment refers to the partial or total loss of vision (brunes & heir 2022). it is necessary to narrate the employment challenges of persons with visual impairment, as distinctively unique from other forms of disabilities as defined by the uncrpd. this study, being fairly novel in namibia, aims to explore the challenges persons with visual disabilities face in securing and maintaining employment. literature review in conceptualising disability, this study draws from the uncrpd (2006) as a guiding framework that emphasises that: [p]ersons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. (p. 4) visual impairment, a category of sensory impairment, is defined as a condition of reduced visual functioning, characterised by partial or complete vision loss, thereby diminishing an individual’s ability to engage in activities that require the use of vision such as writing and reading (naipal & rampersad 2018). employment experiences for persons with visual impairment the ability to work should be seen as fundamental for fulfilment and optimal functioning of individuals (van der klink et al. 2016). as far as employment is concerned, duquette and baril (2013) mention that visually impaired people have always been underrepresented in the workplace. the stigma against disabilities thus had a large impact on their ability to secure and maintain a job. according to a study by portillo-navarro et al. (2022), employers do not always understand the abilities or the competencies of people with disabilities. strindlund, abrandt-dahlgren and ståhl (2019) argue that some employers view the concept of disability as a constraint to work performance and that because of the actual disabilities that people had, employers deemed them as less competent and time, energy and resource-demanding (strindlund et al. 2019). this suggests that the negative beliefs and prejudices continue to create barriers to employment, because the misconceptions from employers added to the ignorance about available adjustments to work arrangements to accommodate employees with disabilities. antonelli et al. (2018b) further report that negative employer attitude is one major factor influencing individuals’ ability to secure employment. chichaya, joubert and mccoll (2020) contend that individuals with disabilities struggled with employment and earned less than their counterparts who did not have any disabilities, which could be argued to impact their overall well-being. according to vanhercke et al. (2014), on the overview on the relationship between perceived employability and well-being, an individual that believed that he and/or she could obtain and maintain employment was more likely to have a better wellbeing than those that did not. it was further reported that individuals who are visually impaired and have a job are less likely to suffer from symptoms of anxiety and low self-esteem (mcdonnall & antonelli 2018). in addition, a study by guerette and smedena (2011) pointed out that when quality of life was measured objectively, people with disabilities had a lower quality of life relative to individuals without disabilities. according to the world disability report, ‘people with disabilities are more likely to be unemployed and generally earn less even when employed’ yet their personal expenses may have been more than their peers without disability (world disability report 2011:11). theoretical framework the social model of disability has been used to anchor the experiences of individuals with visual impairments in the present study. according to this model, disability is a socially constructed phenomenon that may be addressed via radical social transformation (retief & letsosa 2018). in conceptualising disability, the social model argues that any form of disability is regarded as a situation caused by social conditions (such as structures and systems), which requires for its elimination, that persons with disabilities, must be capacitated by the human created structures and systems, to assume control over their own lives and live fulfilling lives (retief & letsosa 2018). to enable equal participation of persons with disabilities in social and economic reforms as advocated for by the various disability policies and frameworks, there is need for physical, social, communication and economic barriers to change (uncrpd 2006). the theory accurately interprets the experiences of marginalised groups when it comes to employment in namibia. the theory is crucial as it is based on the unwarranted isolation and exclusion from complete involvement in society (finkelstein 2001; terzi 2004). barnes (1998) advocates for the social model of disability, arguing that without it, disability studies would be stripped of meaning. this study adopts the theory as proposed by lang (2007) who examined the social model of disablement, in arguing that the social model is not seen as a single entity, but rather a collection of different methods to comprehending the concept of disablement. considering the principles of organisational justice, inclusivity and compliance with namibia’s equity laws, it is critical for the subject matter to be objectified from the lens of persons with disabilities. in adopting the theory, one may contend that the experiences of persons with disabilities serve as a reflection of the precise areas in which society is erring (finkelstein 2001). it is critical to note that the terms employability and employment are defined only from the lens of the able bodies. to enhance meaningfulness, the social model of disability is thus applicable because of its focus on one’s economic or social disadvantaged position, because of social setting and personal traits (samaha 2007). specific to the namibian context, the social model of disability affords persons with visual impairment an opportunity to narrate their employment experiences in a meaningful way. the current study at a global level, persons with disabilities continue to face challenges in securing and maintaining employment (smith 2002). according to garcia et al. (2016), the inclusion of people with disabilities is necessary for their social integration and financial independence and is argued to contribute to their well-being. the challenge, irrespective of tertiary education opportunities made available, is to secure employment and to also maintain it. research by chichaya et al. (2020) indicates that people with visual impairment who have acquired a job are less likely to experience anxiety and self-esteem issues. employees (including those with visual impairment) are recruited on the basis of their knowledge and skills (smith 2002). specific to namibia, the government of namibia introduced the concept of special education and inclusive education to capacitate persons with disabilities with knowledge and skills to participate on an equal basis with others in the quest of securing and maintaining employment. a university degree significantly increases one’s chances of finding work (eide et al. 2011; namibia planning commission [npc] 2018). despite these educational developments, to date, the struggle of employment for persons with disabilities continues to persist (namibia statistics agency 2016). it is not clear what the challenges are, because of the lack of empirical findings on the employment challenges faced by those with visual impairments. disability-related empirical research in namibia focused on cultural beliefs regarding people with disabilities in namibia (haihambo & lightfoot 2010), implementation of the disability framework in namibia (shumba & moodley 2018) and living conditions among people with disabilities in developing countries (eide et al. 2011). there is a lack of qualitative empirical studies on the employment challenges faced by persons with visual impairment, necessitating the current study. research methods and design the study utilised an exploratory qualitative research design. semi-structured interviews were conducted with n=9 persons with visual disabilities. the focus of this study was only on persons with visual disabilities who had acquired some form of educational qualifications, which is the basis for competing in the labour market for work opportunities. the participants were only recruited from windhoek, in the khomas region, namibia. a non-probability sampling method, using the snowball sampling technique, was used. owing to the relatively small population of persons with visual impairment, snowball sampling was utilised as participants were able to refer researchers to other participants who are visually impaired. research study setting and population the study population comprised persons with visual impairment based in the capital city, windhoek, at the time of the study. the exact number of persons with visual impairment could not be obtained. there were no restrictions on how long they have worked or have been searching for employment. the focus was on getting participants who had the experience of searching and finding employment as well as on participants who are still searching for employment after having acquired some sort of educational qualification. according to the namibia disability report, most persons with disabilities are in windhoek, where employment opportunities can be found (namibia statistics agency 2016). data-collection process a semi-structured interview guide was developed for the purposes of this study. the literature on challenges faced by persons with visual impairment in securing and maintaining employment as well as the theoretical framework, guided the formulation of the interview questions. example of interview questions included: how would you describe your experience with searching for a job?; elaborate on the challenges faced in trying to acquire employment; describe how your type of disability may have possibly directly or indirectly impacted your experience in searching for a job. interviews were conducted face-to-face at an agreed upon time and in a secure environment. the researchers approached the namibia federation of the visually impaired in namibia, and contact numbers of possible participants were provided. the researchers called the participants to narrate the purpose of the study and their possible involvement. some were not willing to participate, and some contact numbers went unanswered. the few that the researchers could get a hold of, were able to refer to their friends, who were also visually impaired. in all data-collection attempts, researchers went to where the participants were. before interviews commenced, researchers informed participants (face to face), on the purpose of the study and that they could opt out of the study at any given point without incurring any negative consequences. data were tape-recorded, and in cases where participants felt uncomfortable to tape record, notes were taken. transcriptions of the various interviews were made to allow for theme identification. data analysis the interviews were conducted in english as the official language. the audio interviews were independently transcribed verbatim in english by the first two authors. thereafter, transcriptions were checked for consistency by the same authors. because of the qualitative nature of the study, independent inductive thematic analysis was used to analyse the data by the first two authors. this allowed for the transcribed data to be organised into meaningful categories and themes. this allowed for themes to be extracted from the transcriptions. after extraction, co-authors cross-checked the themes to double-check and ensure they correlate with the coded data. the review of themes against the coded data was conducted until data saturation was reached, and no additional themes could be extracted. ethical considerations ethical clearance to conduct this study was obtained from the university of namibia, department of psychology & social work research ethical clearance committee (no. ps-soahs-fhsvm-2022/4). voluntary informed consent was obtained verbally and dated accordingly with participants’ initials before the interview processes began. given the nature of the sample, no written consent could be obtained as participants needed the consent form in braille format, which was not possible to acquire at the time of data collection. no identifiable credentials were used. the data collected were stored in a password-protected computer with access available only to the researchers. for the participants who consented to being recorded, the audio files were deleted as soon as the transcribing was conducted to uphold confidentiality and anonymity. results as shown in table 1, nine participants formed the sample of the study. the sample comprised two male participants and seven female participants (all with visual impairment). the participants were all in possession of a degree as their highest qualification. although qualified, three participants were unemployed and searching for employment opportunities at the time of the study. table 1: demographic characteristics of study participants. through inductive thematic analysis, six themes pertaining to the employment challenges of securing and maintaining employment faced by persons with visual impairments are presented. experiences on seeking employment theme 1: mixed experiences of excitement, rejections and discouragement participants reported mixed experiences. some participants’ experiences were positive as they felt they did not have a different experience as compared to their peers without disabilities. they understood that there would be some rejections, but that was to be expected in the employability journey. some of them were also fortunate enough to have had employment waiting for them by the time of completing tertiary education, while others were employed at institutions for the visually impaired, so their transitions into working life was smoother than for others. in addition, some participants did not view their disability as an issue. instead, they believed that what they were able to bring to the table was a lot more important. they believed that their impairment would not drag them down and be the basis on which they would be judged, but rather that their abilities should have been the bases thereof. these participants believed that it was what you brought to the table, or what you had to offer concerning your skills and knowledge qualifications that carried greater weight, despite the disability you may have. participant 1 explained: ‘[p]eople do not necessarily see you they only see your resume, from there it is not about looks, but what you can bring to the table; and that definitely helps.’ (participant 1, female, 41–50 years) other participants had negative experiences, often marked by frustrations and discouragement. participant 9 voiced her experience in searching for employment: ‘tiring, and extensive. at that time, every now and then, you see a position being advertised; you would have to make plenty of copies, and if you couldn’t do it yourself, you would have to get an assistant to go with you to wherever the place is. in most cases, what is weird is you would see your colleagues without disabilities being called up for interviews, and you were never called up for an interview.’ (participant 9, female, 31–40 years) participant 4 added: ‘as i indicated, people won’t get back to you. there just won’t be any response, even if you had to drop you[r] applications or apply for as many position as you want, you just don’t get invited for an interview. it’s like you’re trying to go up a ladder, and in the 1st place no one even allows you to get to the ladder. so you don’t even know whether you can climb, or cannot climb.’ (participant 4, male, 31–40 years) it was evident that majority of participants encountered challenges when seeking employment. the job application process was different or more difficult in their opinion. they felt shut down before they even had a chance to portray their competency or skills. participant 2 mentioned: ‘[m]y dear, the man that was hiring accepted my application and even sounded positive for the interview. once i came in for the interview, the mood changed. he even asked me how will i deal with the environment, like if i needed to use the bathroom, who would help me. you know, those types of questions just demoralise you and show you what people think of you.’ (participant 2, female, 31–40 years) participants stated that it took quite a while for employers to recognise their potential because of their disability. this resulted in them having to work harder to prove themselves, thus further reinforcing the pressure they exerted on themselves. participant 5 admitted that: ‘[t]hey think of you like this poor thing that cannot do things. they don’t even allow you to showcase your skills and stuff. they feel like you are just going to be [a] burden and need help all the time.’ (participant 5, female, 20–30 years) this pressure, according to some participants, resulted in stressful experiences. some participants worked in careers geared towards advancing the visually impaired, and the fact that they were disabled gave them an advantage in terms of preferential treatment. participants placed great emphasis on relying on their abilities when searching for a job. they believed that ‘if you know who you are and what you brought to the table’, you could achieve anything. participant 6 explained: ‘[i]f you know what you want, i do not think that your disability will be a barrier from where you want to go or where you need to go. it is about where you want to go; you cannot let the impairment, or the disability hold you back.’ (participant 6, female, 31–40 years old) however, some participants experienced some challenges. they questioned their competency and their connectedness to others as they were under the impression that people without disabilities achieved their goals a lot quicker than those with disabilities. participant 7 stated: ‘i would always feel like people around me could do whatever they were doing better than i did. i could not always keep up, and i needed to work so much harder. obviously, that affected my independence because i always felt like i was not competent.’ (participant 7, female, 31–40 years) the experiences affected their emotions to a point where they were experiencing more negative emotions which influenced their life satisfaction. negative emotions ranged from self-doubt and a lack of belief in their abilities, and this further contributed to experiences of more negative emotions. participant 2 was quite vocal about her difficulty in dealing with her emotions with regard to looking for employment: ‘the struggle to find a job was demoralising. it makes you want to give up and start wondering why you are the one that was born with visual impairment. the constant rejection starts to feel like there is something wrong with you, you know. to be honest, it is not easy staying positive through it all, but ya.’ (participant 2, female, 31–40 years) participant 8 added: ‘[g]rowing up, you were made fun of, so emotionally, it was hard because i always had this subconscious thing of, “[t]hese people are looking down on me”, even if it may not have been the case. emotionally, i had to try and control what was perceived and what was done, and finding this balance was hard.’ (participant 8, female, 20–30 years) theme 2: lack of assistance from companies and organisations participants noted how discouraging it was to prepare your cv, only to come to the company and there is no one willing to assist you to submit your application for employment: ‘this is because you don’t know where to go to hand in applications or go to enquire about the progress of the application processing. some of the people are just not helpful sometimes you know.’ (participant 2, female, 31–40 years) participant 5 narrated that: ‘i can familiarize myself quite well with places i know but sometimes you need assistance, but you don’t always get it. sometimes maybe there are notices at the entrance about where to submit this and that, but you can’t see so you can’t also read.’ (participant 5, female, 20–30 years) theme 3: the role of positive and supportive relationships few of the participants felt supported by their community and in turn experienced a sense of belonging while attempting to secure employment. participant 1 noted: ‘i was very lucky because i started in a special school already. so, i didn’t feel awkward, and especially now because i am teaching the visually impaired kids. it is not a challenge because i knew how to handle things because i also came from the visually impaired school. i also went through that process.’ (participant 1, female, 41–50 years) participant 7 added: ‘i had a great support system.’ (participant 7, female, 31–40 years) participant 2 felt that her community looked up to her as a good role model, but in the same vein, she identified with her communities’ role models. her integration and acceptance into her different communities was based on mutual admiration and mutual respect. participant 2 expressed: ‘i had a small group of friends, and having them around makes it easier than keeping a crowd, if that makes sense. and being accepted by these five friends, we were pretty close, and some of us are even still close; it has been 25+ years. you just realise that being accepted by a smaller group of people brings more joy to your heart than being accepted by a crowd.’ (participant 2, female, 31–40 years) some participants experienced more positive emotions during the journey of searching for employment. this was because some of them experienced positive support that encouraged them to be satisfied with the life they had. participant 5 and participant 1 expressed that their communities helped enhance the positivity they experienced during that time. theme 4: mental fortitude and spirituality this theme focused on participants’ ability to cope with the various experiences that come with searching for employment. participant 9 stated: ‘[p]sychologically, it’s just the same. i believe in myself. the first thing that made me to believe is that i went through the same thing, classes and studies with others. we failed together, and we passed together. i didn’t fail because of my disability but because i did not study, or understand, or enjoy the subject, just like everyone else. that’s why i never doubted myself or seen myself as less of a person. i view myself as the best of what i do; that’s what makes me wake up in the morning.’ (participant 9, female, 31–40 years) most participants relied on their religion or spirituality to guide them through tough times or be grateful for the good times. participant 2 noted: ‘[t]his is my passion and fate; god wouldn’t have led me here.’ (participant 2, female, 31–40 years) other participants truly struggled to gain employment, but participant 3 knew that: ‘[m]y religion is strong my dear; god gives his hardest battles to his strongest soldiers.’ (participant 3, female, 51–60 years) some participants were working in the field of visually impaired advancement and the fact that they themselves fell into the community gave them an advantage in terms of preferential treatments. in that regard, their disability directly impacted their experience in searching for employment. participant 1 and 5 both work at institutions for persons with visual impairment and have admitted that they knew the easiest place of employment to look for was in those environments as their input would be appreciated more. participant 3 was able to get into her current job because she was able to get into the specific tertiary institution because of initiatives such as affirmative action. participant 5: ‘i applied to the federation for the visually impaired so securing employment as a person with disability was fairly easy because there was no discrimination and they understood the need for our community to have a job.’ (participant 5, female, 20–30 years) a sense of happiness and contentment with where they were in their lives was highlighted in some of the interview discussions. this was evident with participants 3, 4, 5, 6, 7 and 8. challenges in maintaining employment participants 2, 4 and 7 had not secured employment and therefore made minimal contributions in this section. theme 5: challenges of isolation and frustration all other participants, except for participants 2, 4, 7, indicated that, at times, one would think you have made progress but then you move two steps back because of one or other issue, that is sometimes beyond your control. this sometimes pushes individuals to quit their work because of a lack of growth prospects. the participants experienced a sense of unease regarding their perceived competency. this was a result of the judgement that they received from their colleagues. they expressed that they felt incompetent because they could not always complete tasks in the same manner or timeframe as their peers. they realised that this experience would have been better had they experienced social acceptance. participant 2 stated: ‘i always felt a little judged by my colleagues because of my impairment. i sometimes felt like they thought i was putting on a show when i was struggling and that they were always looking down on me and judging me for my disability. they would simply think that i was just looking for excuses not to perform tasks at work, but i do believe that i proved myself, regardless of my impairment.’ (participant 2, female, 31–40 years) theme 6: challenges of adaptation and flourishing the participants mentioned that another factor that influenced maintaining employment was the need to adapt. according to the participants, there was an urgent need for them to be prepared for instances where they knew someone without disabilities would not accommodate them. hence, adaptation needed to become their second nature to safeguard their well-being. participant 8 mentioned: ‘[w]e work with laptops, so that has a big effect on productivity, which is hard because you can’t even do what others can because of factors such as light, color, where you sit in the office, what technology is available to you, so adjusting was difficult. you need a lot of adaptation and on the spot thinking and comprising because i had to start thinking, “[w]hat can i do if something doesn’t accommodate me?”.’ (participant 8, female, 20–30 years) participant 7 stated: ‘awareness was minimum in the workplace, when you hear people speak about people with disabilities, it would be a shock. they ask questions like how are they working, how are they performing their work if they cannot see. i remember someone asking, “[w]hy me? why did you need to come to my division?” they thought i would waste their time by coming in, sitting around and wasting their time. which is actually the wrong perception.’ (participant 7, female, 31–40 years) it was noted, from participants’ narratives that in some workplaces, that they would also come across situations where people claim that devices or equipment especially for accessibility used by people with disabilities are very expensive. so they would rather avoid the cost. despite the challenges documented earlier in the text, for other participants who had managed to maintain employment, a recurrent theme of inclusion emerged strongly during the data-collection process. the feeling of being part of a work community and feeling like they could add value in improving and changing that specific community meant a lot to the participants. theme 7: positive experiences of inclusion participant 8 was very vocal noting that she had to fight against negativity to acquire the job; but once she was a part of the institution, she felt part of the work community. she noted: ‘i felt isolated in tertiary education and maybe that’s because people were young, and did not really understand. but in the work environment, everyone does their part and that makes everything run smoother. i no longer felt isolated.’ (participant 8, female, 20–30 years) like the aforementioned, even with the difficulties they faced in trying to secure employment, participants’ emotional well-being was significantly improved because they were able to acquire employment. participant 1 and participant 6 repeatedly expressed feelings of gratitude that improved their positive emotionality as well as their job and life satisfaction. participant 6 continued on to say: ‘[m]y dear, how can one not be grateful for the opportunity to work in the field you always dreamed to be a part of? i am just so happy; it’s like i cannot even explain it properly.’ (participant 6, female, 31–40 years) participant 1 spoke of the day she graduated and what that meant to her because she already knew she had a job waiting for her, but the graduation meant that she had finally made it through. a recurrent pattern in this section of the interviews was that their emotional well-being improved with the ability to maintain employment. their understanding of the struggles that come with maintaining employment for those with disabilities left them generally feeling more optimistic and positive about their jobs, and therefore their lives. participant 6 mentioned: ‘i think with the well-being, [it] starts with, “[c]an you maintain what you said you can do?” because if you can maintain what you promised in the interview, obviously no one will look at you or treat you badly or think that you were given the position because you are visually impaired, like you are a charity case, because if you can provide the goods, no one tends to ask questions because you keep them happy.’ (participant 6, female, 31–40 years) in fact, their ability to acquire and maintain employment increased their sense of competency and autonomy. participant 3 experienced high levels of autonomy and mastery because: ‘[t]he work life is much better than my tertiary experience. i get to do my part and do it well, and i don’t feel like a burden anymore. in fact, i feel like an asset.’ (participant 3, female, 51–60 years) participant 2 has not been able to find paid employment and occasionally volunteers her counselling skills at an institution or her church. her frustration stemmed from when she would volunteer at institutions because: ‘i would volunteer at these places and they would really be impressed with my skills and how i handle some cases. but the problem would always be when we get to the point of permanent employment, there was always an issue. there was always a waiting list of who can be hired and i would be put on that list but there are a lot of people and you cannot volunteer forever because we also need to support ourselves. these waiting periods don’t help us.’ (participant 2, female, 20–30 years) discussion the various themes uncovered reveal negative and positive employment experiences of persons with visual impairment. it is an undeniable fact that the standard of living for persons with disabilities improves significantly with securing and maintaining employment (cimarolli & boerner 2005). the findings of the study revealed the challenges involved in the job applications for persons with visual impairment and the lack of reasonable accommodations adopted by workplaces in efforts to facilitate this process. in view of this, it is crucial that the human resources management offices of all workplaces devise strategies to support job applicants with visual impairment in submitting their job applications. based on the themes, discrimination and unfairness were emphasised as being prevalent. the experiences of discrimination were noted in some workplaces. this justifies the adoption of the social model on disability, alluding to the fact that participants experience unwarranted isolation and exclusion as a result of systems and structures that exist within society and in workplaces. amin et al. (2021) indicated that visually impaired students face the challenges of peer-to-peer acceptance at university. the lack of acceptance could be seen as a prevalent issue across various educational contexts. the discrimination that students experience could be argued to stem from a lack of acceptance from fellow human beings in various contexts. in changing the narrated experiences of persons with visual impairment, the social model of disability argues that the human-made systems and structures that aggravate disadvantages for persons with visual impairment, can be changed. as such, awareness on types of disabilities and limitations associated with each visual impairment is crucial. awareness using various educational platforms to reach a wider population can help individuals in society and in workplaces, understand the internal struggles persons with visual impairment endure throughout university and post schooling, in the world of work. it is necessary that individuals and organisations understand the limited abilities of having visual impairment as a key organ of any human being, which becomes inherent to an individual’s optimal functioning in abilities that require the use of vision. this is one way of changing the attitudinal, social and structural barriers embedded in various systems and structures of society, as advocated for by the social model of disability. the findings reveal that, in some countries, such as in the case of this study, workplaces are not adequately equipped to respond to the needs of employees with visual impairments, and would rather avoid employing such people, because of costs associated with reasonable accommodation. in operationalising the social model and its applicability within the namibian employment setting, it is crucial that reasonable accommodation measures implemented within organisations are monitored, to ensure the limitations associated with not employing persons with visual impairment are identified and actioned upon at regional and national levels. the study was able to establish that experiences at the university level for persons with visual impairment create intense mental and emotional pressure for persons with visual impairment in their quest for employment. although some participants were able to adopt strategies to cope (as shown in the results section), it was in most cases at the expense of their own optimal functioning and wellbeing, which should not be the case. if not addressed effectively, it could have grave potential to cascade into a cycle of emotional and mental turmoil. as such, for persons with disabilities, inclusion and support are crucial at all levels, in any setting (manitsa & doikou 2022; mcdonnall & antonelli 2018). the findings of this study reveal that community support presents a huge support system for persons with visual impairment. the social model emphasises that persons with disabilities come from communities. it is the same communities that influence the perception and understanding of disability. as such, community awareness campaigns tailored towards enhancing an understanding of the challenges experienced by persons with disabilities and the necessary support that could be provided are crucial. this is further corroborated by cimarolli and boerner (2005), whose study found that support, especially from families, was linked to positive experiences of well-being for adults with visual impairment. in the context of namibia, stakeholders can partner at local, regional and national levels in creating support systems for persons with visual disabilities. this could be in the form of assistance with seeking employment and maintaining employment. this can further be enhanced through creating avenues for persons with visual disabilities to belong and contribute to society. lund and cmar (2019) argue that the knowledge and skills acquired at various tertiary institutions play a key role in boosting confidence of graduates with visual impairment to search and maintain employment; however, the lack of recognition for the knowledge and skills acquired, coupled with employer rejection, still had significant impact on their well-being. this further reiterates the crucial role of advancing the mandate of special and inclusive education to ensure that persons with disabilities are afforded the necessary opportunities to have fundamental education to advance to tertiary education. schools at the grassroots level and secondary and post-secondary school institutions are urged to continue to find avenues for inclusion and support for students with disabilities. garcia et al. (2016) argue that securing employment is one way to improve employment outcomes for persons with disabilities. for functional integration in society, the well-being of persons with visual impairment is crucial at every stage of their life (antonelli et al. 2018b). the findings of the study revealed that the challenges associated with securing employment are vast and have a negative toll on self-acceptance, self-doubt, anxiety and stressful experiences of graduates with visual disabilities, which could potentially impact overall functioning of persons with visual impairment. individual level interventions (to capacitate persons with visual impairment on ways to safeguard their well-being at different stages in their lives) and organisational level interventions (to harness organisations’ capacity to support well-being of persons with disabilities in their workplaces) should be put in place. to promote optimum integration, garcia et al. (2016) support the importance of sensitising employers and work environments on the reality of visually impaired persons. according to steverson and crudden (2023), positive co-worker relations and supervisor support have been shown to enhance job satisfaction and a sense of belonging for persons with visual impairment. as far as the employment equity or affirmative action policies are concerned, there is need, at regional, national and international level, to develop measures that will strengthen employing organisations’ compliance to the employment and reasonable accommodation measures that come with employing persons with visual impairment. the findings provide an avenue for the government line ministry in charge of disability affairs to engage key stakeholders on crucial issues uncovered in this study. limitations despite efforts to have more than 20 participants in the present study, the population of persons with visual impairment in windhoek proved to be rather limited in number. future research could strategise on reaching participants spread across the entire country. the study employed a cross-sectional qualitative research method and as such was only able to assess the employment experiences of graduates with visual impairment. quantitative studies on employment and unemployment and/or related variables should be conducted to enhance understanding of the phenomenon of employment for persons with visual impairment. conclusion more efforts need to be diverted towards creating an integrative support model for persons with visual impairment, comprising all stakeholders at local, regional and national levels. the reality on the ground is that persons with visual impairment will need a considerable amount of reasonable accommodation, at all levels, to allow for optimal integration into the labour market. the institutions of higher learning and workplaces should provide an environment of inclusion and support for persons with visual impairment to contribute to the development of persons with visual impairment who are resilient and who have a sense of belonging. acknowledgements competing interests the authors declare that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article. authors’ contributions a.n.p. and k.u. conceptualised the study, collected the data and wrote the original article. a.m. supervised the project, reviewed and edited the article and c.k.h. reviewed and edited the article. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability all data are stored in a password-protected computer with access to the researchers. data will be made available, upon request. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position 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geiger postal address: po box 19063, tygerberg 7505, south africa dates: received: 26 aug. 2011 accepted: 16 july 2012 published: 21 sept. 2012 how to cite this article: geiger, m., 2012, ‘communication training for centre-based carers of children with severe or profound disabilities in the western cape, south africa’, african journal of disability 1(1), art. #10, 7 pages. http://dx.doi.org/10.4102/ ajod.v1i1.10 copyright notice: © 2012. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. communication training for centre-based carers of children with severe or profound disabilities in the western cape, south africa in this review article... open access • abstract • introduction    • problem statement • methods    • structure and content of the on-site communication training       • tutorial topic 1: basics of communication development       • tutorial topic 2: diverse communication disabilities       • tutorial topic 3 – participatory communication strategies • challenges experienced • discussion of results • conclusions    • implications and recommendations • acknowledgements    • competing interests • references • footnotes abstract top ↑ the purpose of this paper is to provide a preliminary, qualitative review of an approach to training centre-based carers in supporting basic communication development and providing communication opportunities for the children with severe and profound disabilities in their care. in south africa, these children are often the most neglected in terms of planning and providing appropriate interventions. for those with severe communication disabilities, an additional lack is in the area of the basic human right to meaningful interactions and communication. sustainable strategies to provide opportunities for basic communication development of these children are urgently sought. several effective international and local parent training programmes have been developed, but the urgent need remains to train centre-based carers who are taking care of groups of diversely disabled children in severely under-resourced settings. non-profit organisations (npos) have been exploring practical centre-based approaches to skills sharing in physical rehabilitation, activities for daily living, feeding and support for basic communication development. as a freelance speech therapist contracted by four npos to implement hands-on training in basic communication for centre-based carers of non-verbal children, the author describes a training approach that evolved over three years, in collaboration with the carers and centre managements. implications for training (for speech therapists and for community-based rehabilitation workers) and for further research are identified. introduction top ↑ communication with others is an activity that defines our humanity. yet, in spite of policy and legislative frameworks emphasising communication as a basic human right (department of health 2000; united nations 2008), it is often overlooked and underestimated as a basic human need. the motivation for writing this paper comes from the author’s observations of how children with severe or profound physical, intellectual and/or communication disabilities, attending special care centres in under-resourced settings, are often deprived of this basic right due to multiple factors, and yet, how do-able steps can facilitate meaningful interaction and functional communication opportunities. this review is a reflection on an evolving and dynamic skills-sharing approach and a preliminary step in the quest for a model of best practice for training and empowering carers of groups of diversely disabled children in formal and informal special care centres in the western cape, south africa. problem statement prevalence data on children with severe disabilities in south africa are sketchy (schneider and saloojee 2007). however, reports confirm increases in severe disabilities in children, secondary to pre-, periand postnatal birth complications (acpf 2011; who 2011). these are further compounded by the prevailing social and environmental conditions, including poverty, limited access to health and rehabilitation services, as well as the effects of hiv and aids (acpf 2011; who 2011). furthermore, these children, and especially those with severe and profound intellectual disabilities, are often the most neglected in terms of planning and providing appropriate interventions and services (acpf 2011; ransom 2009; saloojee et al. 2006; who 2011). in south africa, children with severe or profound disabilities have been excluded from educational inputs for many years (western cape high court 2011) and regular, formal speech therapy services (limited to the tertiary hospitals in the area) are often not accessible to these children. non-profit organisations (npos) have attempted to alleviate this situation by providing much needed but often fragmented ad hoc speech (and other) therapy services, and training and support of carers in the special care centres in and around cape town. the policy environment – in brief: international and local policies provide a strong directive for adopting rights-based approaches to service delivery for people (including children!) with disabilities. at the global level, the united nations convention on the rights of children emphasises the rights of all children with disabilities to access all the help they need (united nations 1989; article 23). furthermore, the united nations convention on the rights of persons with disabilities (uncrpd) elaborates on the rights of persons with disabilities in detail, including the right for persons with disabilities to have access to communication and to participate in their communities (united nations 2008). south africa has formally ratified the uncrpd and therefore accepted it as legally binding. in terms of international education policies, south africa had also signed the earlier ‘salamanca statement and framework for action on special needs education’ (unesco 1994) – committing to the principle of education for all. at a national level, south africa has some of the most progressive human rights-based legislation in the world, yet its implementation is often lacking (acpf 2011; dube 2006; ogot, mckenzie & dube, 2008; schneider & saloojee 2007). national policies detail the vision of a ‘society for all’ and the integrated national disability strategy (inds), serves as a framework for the integration of disability issues in all governmental development strategies (office of the deputy president of south africa 1997). however, children with severe disabilities, including those with a severe or profound intellectual disability and an iq of less than 35, have been formally excluded from fundamental educational and training inputs for many years (wcfid 2011; western cape high court 2011; wood et al. 2009). special care centres for these children have not been included in any form of strategic planning or budgetary provision for appropriate educational services or even human resources for basic stimulation and training provision (wood et al. 2009). spearheaded by the western cape forum for intellectual disability (wcfid), efforts to challenge and change this legislation have finally reached a victory in the high court of south africa in november 2010 (western cape high court 2011). while audits are currently underway to assess the exact needs and possibilities, the implementation of this ruling will take time. on another front, the national rehabilitation policy (department of health 2000) addresses the provision of assistive devices in south africa, including augmentative and alternative communication (aac) devices. globally, technological and other developments in the specialised field of aac have delivered revolutionary possibilities for people with severe communication disabilities (alant 2005; beukelman and mirenda 1998; schlosser 2003). however, the translation of these technological developments and other evidence-based aac strategies into functional communication is still decades away in many under-served and low income communities, where policy rollouts, financial and human resources in terms of skills and numbers are lacking (mcconkey 2005). this is clearly evident in the population of children with severe or profound disabilities in the extensivelydisadvantaged contexts of the western cape. in the meantime, at grassroots level, there is an urgent need for awareness-raising and enskilling of centre-based carers, to provide the means and moreover the opportunities for the most basic, pre-verbal interactions and non-verbal communications for children with severe and profound disabilities. the situation at grassroots level: a repeatedly observed situation in disadvantaged areas of the western cape is that mothers of children with severe disabilities cannot seek employment as they cannot find day care facilities for their children. very few mainstream crèches and day care centres accept children with disabilities, especially severe disabilities. this is sometimes due to negative, albeit unknowing, attitudes and pressures of other parents, not to accept children with disabilities due to the additional care they require and/or persistent beliefs that disabilities (or at least their causes) are contagious (chataika 2011; duncan et al. 2009; ingstad & reynolds-whyte 1995). whilst there are some encouraging examples of mainstream crèches accommodating children with disabilities and of other parents embracing and assisting such children and their families, this is still the exception rather than the norm. several special care centres have thus been started by mothers of disabled children themselves who have extended their care to other disabled children. some of these community-based initiatives, which began as small informal centres, have developed into larger, more formal special care centres. as the centres grow and more help is needed, other unemployed mothers who seek care for their children with disabilities sometimes begin working as volunteers or become carers at such centres. these community-based initiatives usually struggle through years of self-funding or are run on a portion of the care dependency grants1 of those attending children who receive them. even after formalisation and qualification for formal subsidies, the available funding in the special care centres only covers minimal human resources. the observed norm is disproportionately high child-to-staff ratios and poorly paid staff or volunteers, who are mostly untrained, but include enormously motivated and capable mothers of children with disabilities themselves. these human resources are insufficient to implement even the most basic individual intervention plans, as carers are in ‘survival mode’ and barely manage with the basic care needed. in spite of extremely difficult conditions such as large, mixed-impairment groups and cramped and under-resourced facilities, carers continue to provide excellent and loving basic care to the children – often for no or below-minimum wages. it is not uncommon to find informal centres where children with severe disabilities are treated as sick patients, confined to high-sided cots, fed, cleaned and medicated – albeit with the utmost care – very much in line with ‘medical model’ thinking (duncan et al. 2009; ingstad & reynolds-whyte, 1995; ross & deverell 2004). there are no therapeutic inputs or stimulation, nor opportunities for the children to explore, play or interact with others at their respective levels of ability. however, they need opportunities and support to enable them to develop to their utmost potential and to achieve the best quality of life possible. information from parent training programmes such as the internationally renowned hanen programme (pepper & weitzman 2004) and the portage project (sampon & wollenburg 1998), as well as local research with primary caregivers in nuclear family situations (popich, louw & eloff 2007) provided helpful content but limited application for caregiver training in these centre-based group contexts. likewise, research about centre-based caregiver training in well-resourced, developed country contexts with low child to carer ratios (girolametto, weitzman & greenberg 2003), or even more local programmes for specific disabilities (hambisela, n.d.) were found to have limited application in the specific local contexts of under-resourced and understaffed centres, with previously untrained carers caring for large groups of children with diverse disabilities, ages and levels of functioning. however, provisional local research results on addressing the social context, or human interactions within the environment of residential settings for orphaned and vulnerable (not necessarily disabled) children, through caregiver training, are of great interest and hold much promise (koch & franzsen 2012; koch & kok 2012). in the area of basic communication, the need is for carers to be empowered to facilitate and support meaningful interactions and optimal communication development – albeit mostly non-verbal – for the children in their care. several of the npos who have been backing grassroots special care centres for children with severe disabilities, are supporting the implementation and exploration of training approaches for such basic communication. this preliminary, descriptive review of what has been helpful and what has not, is a small step in the much needed, more formal enquiries into questions of effective, relevant and sustainable centre-based communication training interventions. methods top ↑ reflective practice (schön 1995) and iterative or self-generating cycles of action (chambers 2010; denzin & lincoln 2000), comprising reflection and adjustment to planning and implementation of communication training sessions across three years, have facilitated some preliminary conclusions and tentative recommendations. funding restraints and the number of centres that requested training in basic communication development, meant that the training was offered at a total of sixteen special care centres, in cycles of three to six three-hour sessions. where possible all the carers in a centre were included in the training, but emergency needs including washing children, cooking and cleaning, etc. meant that carers often came and went during the course of a session. all the carers were female, with ages ranging from 18 to beyond retirement age (65+). the challenge for this therapist offering the training in basic communication was to utilise the limited time in the most effective and efficient way. crucial considerations included the lack of physical resources (e.g. space and equipment) in these centres; the diverse mix of impairments represented in each centre; the wide age range of children often in a single group (three to 18 or even 21); the high child-to-carer ratios (often up to 10:1, and 18:1 in one situation); the labour-intensive basic, physical care needs (feeding, cleaning, frequent medication etc.); the challenges facing the biological mothers in carrying out individual stimulation programmes at home; and the fact that the majority of the centre-based carers have no formal, basic training. the emphasis and priorities of this training therefore focused upon what would be most relevant to as many of the children’s needs as possible, what could be implemented by the already overstretched carers in a sustainable manner, and what would enhance the children’s functional interactions, basic communication and quality of life. structure and content of the on-site communication training the previously implemented individual therapy model, that is, therapists going into the centres and doing ad hoc hands-on work with carers and individual children, was clearly not effective or sustainable: records indicated a trend of more assessments than actual therapy. as a result, a participatory learning and action (pla) approach was followed (chambers 2007; hope & timmel 1995, 1999; hartley et al. 2005). the structure of the on-site communication training sessions with carers evolved by using the cyclical process of implementation, reflection and/or evaluation, and adjusted implementation (chambers 2007; hope & timmel 1995, 1999; hartley et al. 2005). a combination of basic communication theory and hands-on skills transfer was found to be most effective, with the following sections and approximate time allocations within each session:• opening challenge • tutorial (opening challenge plus tutorial made up about 20% of session time) • hands-on skills transfer with carers and children (about 70% of session time) • wrap-up with questions, self-evaluation and next steps (about 10% of session time). opening challenge: the purpose of the opening challenge was to focus the group and to establish the training needs and priorities of the carers. this time was guided by the three freirian questions (freire 1970; hope & timmel 1995, 1999; hartley et al. 2005): ‘what is the problem?’ ‘why is it a problem?’ and ‘what can we do about the problem?’ the focus was thus upon the carers’ perceived priority problems, challenges and possible solutions. tutorial: the tutorial section included teaching topics such as ‘basics of communication development’, ‘diverse communication disabilities’ and ‘participatory communication strategies’. there were slight variations according to the self-identified needs of each centre and different groups of carers. the format was an interactive teaching approach focussing upon examples contributed by the carers present. tutorial topic 1: basics of communication development this introduction followed the principles as presented in the handbook, let’s communicate (who 1997). it emphasised the importance of developing the prerequisite pre-verbal skills of attention, cause and effect, eye contact, imitation, listening, turn-taking, understanding and all forms of non-verbal communication, including the use of the voice in the absence of speech, body language, hand or eye-pointing and gestures. the image of the communication house (figure 1) needing a strong foundation (pre-requisite attention for communication) struck a chord with most carers. the support and development of these foundational skills was also emphasised in the hands-on skills sharing sessions (described further on). figure 1: ‘the communication house’ adapted from let’s communicate (who 1997). furthermore, an awareness of the frequent and close causal relationship between problems related to these pre-verbal communication skills (e.g. ‘attention’) and challenging behaviours was variably explored, depending on carer needs and readiness in different centres. one success story involved a carer in a particularly noisy centre, who implemented a simple strategy with a particularly disruptive child: she would speak the child’s name, pause to wait for eye contact, – smile and then give the child a simple instruction and verbal praise upon completion: all in a soft voice. this encouraged the child to attend to the carer much more than before because he enjoyed the interaction and the verbal reinforcements so much. tutorial topic 2: diverse communication disabilities children with severe or profound disabilities make up a very heterogeneous population in terms of communication strengths and weaknesses. some key differences in functional communication components (who 2001) were explored with the carers. this was crucial in identifying strategies for managing their groups of very diversely disabled children. for example, different communicative support and opportunities were needed for: • children with severe cerebral palsy, who could not speak or use gestures but could understand almost everything and were extremely motivated to communicate • children with autistic behaviours whose ability to connect with others was the most affected area and often resulted in challenging behaviours • children with down syndrome whose strengths included their desire to connect with (and please) others and their effective use of a limited repertoire of a few clear utterances for many meaningful, purposeful interactions. while the above is an oversimplification, it was useful in helping carers to understand why children differed so much in their needs of stimulation and how they could be grouped for optimal stimulation and communication opportunities. for example, one carer had a group of eight children, six with severe intellectual disabilities, relatively strong physical abilities and very low abilities to connect with others (i.e. with autistic tendencies); and two girls with much higher levels of understanding and a great desire to communicate, but limited means of expression due to severe cerebral palsy and no speech nor sufficient motor abilities to gesture or sign. grasping these differences, the carer proceeded to position the two girls next to each other, where she could direct higher level visual stimulation and expectations to them together and watch for eye blink and other body language responses from them more easily than when they were placed among the less communicative, more physically active and distracting peers, where she often missed the two girls’ communication attempts. moreover, the two girls could develop a real friendship through their very astute perception of one another’s subtle non-verbal communication. tutorial topic 3 – participatory communication strategies the importance of inclusion and participation as applied to their children was discussed with the carers. two issues regularly became clear:• challenging behaviour, secondary to intellectual disability, and often the child’s only means of communication (beukelman & mirenda, 1998), was the most frequently given reason why parents and carers could or would not include children in family or social activities. the links between developmental delays in preverbal skills (such as attention, listening skills and most especially, turn-taking) and challenging behaviours were explored with carers and the children in their care. practical strategies such as reducing background noise levels, and consistent cause and effect systems like ‘time out’ were practiced to support these preverbal skills, the lack of which often caused frustration and challenging behaviours – which contributed to the vicious cycle of exclusion and more asocial behaviours. • even within the centres, some children were previously regularly excluded from group games or activities, and their inclusion and participation was addressed. examples included those with the most severe physical impairments, who were wheelchair or buggy users or positioned in standing frames or even side-lyers, and were previously thought to be incapable of participating in ball and other group games. the need for these children to have opportunities to play (e.g. the excitement of having a turn to receive and pass on the ball like everyone else) was emphasised. likewise, children with severe intellectual disability and related challenging behaviours (such as ‘autistic’ behaviours and/or attention deficits and hyperactivity) were previously excluded on the grounds that it was too difficult to include them or that they were thought to ‘prefer to be on their own’. their need to learn to focus, attend, listen, wait for their turn etc. was elaborated by referring back to the ‘communication house’ presented earlier (who 1997). specific strategies to include all these children in the circle activities, and to facilitate the participation of all, were problem-solved collaboratively and then practiced in the hands-on session, outlined below. hands-on skills transfer with carers plus children: time allocated to hands-on skills sharing was aimed at practicing skills that had first been discussed during the tutorials, and included: • morning rings, greeting and naming rituals emphasising individual children’s names and getting their attention and encouraging them to participate vocally or with basic gestures. these were already widely, although in some centres irregularly, practiced. therefore, value-added aims such as enhancing active participation, developing attention, listening skills and turn-taking abilities during these activities were applied and practiced. • song circles: these had previously also been implemented inconsistently. building upon these, the repetition of a small number of known and loved songs (preferably with some actions and/or a repetitive chorus and clapping) was found to encourage participation more than a wider ever-increasing repertoire of songs. carers were made aware of the value and enjoyment of repetition for the children in their care. the common tendency to reinforce only responsive children was counteracted by strategies that supported the active participation and enjoyment of each and every child according to the child’s ability. it was repeatedly observed that carers were surprised by ‘unresponsive’ children’s capacity for enjoyment during these activities. in line with sameroff and fiese’s well-known research on transactional regulation (2000), it was also observed that the reciprocity between child enjoyment and carer enjoyment contributed to the sustainability of these inclusive, multi-goal activities. • inclusive ball games: these were practiced as a strategy to help carers to meet different goals (such as attention, turn taking etc.), for individual children while engaging a whole group of diversely disabled children in a single activity. other, similar group games were also encouraged as an empowering strategy for carers who, due to the staffing shortages, often had to cope alone with a group of up to ten (or even 18!) diversely disabled children. those who were physically and intellectually stronger could be interspersed between those in buggies and/or those temporarily restrained on children’s chairs to participate better. the task of waiting for one’s turn would take repeated practice for those with attention and/or hyperactivity difficulties. however, through the carer’s physical facilitation, children who were usually physically excluded could experience participation and have fun, while those with attention and behaviour difficulties got valuable practice at turn-taking, attentive looking and listening. the enjoyment of both children and carers was a factor supporting the sustainability of such games that support pre-verbal skills and inter-personal communications (sameroff & fiese 2000). • participatory group puzzle activities: these were implemented as another strategy to provide pre-verbal and early communication stimulation for attention, turn-taking and basic interaction for a whole, diverse group simultaneously. this took into account the scarcity of educational equipment such as pegboard puzzles and instead of wanting to give each child a puzzle to complete, each child would only get one piece to hold and await their turn as the carer moved the puzzle around and facilitated each child’s participation in the completion of the puzzle as a group effort – with much excited reinforcement of skills such as waiting for one’s turn and saying or indicating whose turn was next. wrap-up with questions, self-evaluation and next steps: at the end of each session, a brief time for wrap-up was introduced to meet the need for consolidation and to serve as a monitoring strategy. this was guided by two basic reflective questions, ‘what did i learn today?’ and ‘what new game, activity or strategywill i try out in the coming week?’ these few minutes at the end of each session became an integral and valuable part of the on-site training and provided the speech therapist-trainer with insights into the strengths of the carers, training effectiveness and gaps that needed to be addressed as a priority in a subsequent session. it was informally observed that carers readily implemented these self-reflections and added to them during the week – as was evidenced by their responses in the opening challenge of the subsequent session. challenges experienced top ↑ during the course of the training sessions in the sixteen special care centres, several challenges prompted adaptations in the training approach. the following occurred at least twice in separate situations: • trainer-initiated skills-sharing with carers resulted in carers becoming passive and/or withdrawing, and leaving the trainer to do the activity in question. therefore, it was necessary to get buy-in from the carers in terms of what they felt were priority problems and what they had already tried. • individualised multi-step intervention programmes for individual children were difficult or impossible for the carers to implement in addition to their workload of basic ‘survival’ care. therefore, activities that could benefit several children at once were more readily and sustainably applied. • ‘theoretical overload’: in several centres, there were written notes, posters and other forms of reminders from past on-site training interventions covering various topics on the walls. in most cases, these were not being implemented, and discreet enquiries elicited responses including, ‘there isn’t time to read it’ and ‘i don’t understand it’ and, in several observed situations, carers lacked the english language and/or literacy skill requirements of the written notes and posters. therefore, written inputs were minimised. • there had previously been piecemeal interventions by different therapists, with contradictory inputs. this was due to the precarious funding environment of ngos and volunteer organisations working in the sector, and diverse organisations contributing short-term training inputs or one-off sessions. unrelated or contradictory training inputs resulted in noticeably confused carers, and sometimes indifference or disinterest in training inputs. therefore, the opening challenges and beginning with what the carers remembered from previous multidisciplinary training inputs helped discussion of results top ↑ outcomes of the on-site communication training are best left in the words of the carers themselves. these were in response to the reflective question posed as a means of self-evaluation at the end of each session, ‘what did i learn today?’a: ‘… i can talk to a child even if he cannot talk’ b: ‘… you must never underestimate them’ c: ‘… every child can be included in the games’ d: ‘… all of them enjoy ball games, even the buggy-ones’ e: ‘… every child has something to say’ f: ‘… even without speech, they can use their voice’ g: ‘… every child’s quality of life can grow’ h: ‘… if i enjoy myself, the children will have more fun.’ these responses helped to set the tone, level and pace of communication inputs during the training. from added observations and additional informal carer feedback, the following were identified as useful approaches that could be built on in future training: • building on the existing assets in each centre (for e.g., using existing song circles or naming rituals and adding value, as outlined above) • prioritising care for carers who were overstretched and under-resourced, and needed to feel understood and nurtured in order to care for the children with warmth and creativity • a combination of dedicated sit-down information sharing and discussion, followed by hands-on approaches that took place in as natural a context as possible • opportunities for the carers to verbalise their needs as well as their problem-solving strategies and successes in terms of communication with the children in their care • a brief, reflective self-review at the end of each session to consolidate and strengthen implementation of the learning experience. language or terminology misunderstandings in the earlier tutorial section sometimes only surfaced during this time – but could at least then be resolved! some issues were identified and then addressed in response to needs or requests raised at specific special care centres with observable, continuing implementation during follow-up visits. these included: • the replacement of obscure and non-transparent hand signs with appropriate, easily understood gestures, for example, a ‘salute’ greeting replaced the previously taught and non-transparent american sign language (asl) ‘good + morning’ at one centre. this had immediate and lasting results. at least two children readily adopted the greeting and got immediate and friendly responses, even from uninformed members of the public. six months later, the salute gesture was observed to be part of the spontaneous repertoire. this was used to effectively ‘connect’ with members of the community. • sportsmen’s wristbands, traditionally used to wipe perspiration off the forehead, were introduced as a means of drooling control for children who had a mild-moderate saliva control problem. with repeated reminders from carers, this form of control could replace less socially acceptable bibs in children who were physically able to wipe and cognitively able to grasp the instruction to do so – and in some cases increased inclusion in family and social events due to decreased ‘messiness associated with drooling’ were reported by carers who had implemented the ‘wristband training’ consistently with certain children. an increase in self-confidence (and upright posture!) was also reported in at least two cases. • inclusive games and song circles were seen to be sustainable as they helped the carers to provide enjoyable stimulation to a group and meet diverse goals with variably disabled children. conclusions top ↑ on-site, hands-on training appears to be an effective strategy to support untrained and unskilled, but motivated carers in grassroots special care centres caring for groups of children with severe and profound disabilities, where poverty or other socio-environmental factors preclude parents from doing this in the home environment. while the ‘developed world’ model of low-ratio individual interventions by professional staff remains unrealistic, a long-term mentoring programme – ideally with a once monthly visit to each centre – would empower carers to implement valuable support for basic communication development (and enjoyment) for the children with severe and profound disabilities in their care. implications and recommendations the urgent and continued need for government level planning and service provision in terms of educational, training and therapy services for the much neglected population of children with severe or profound disabilities cannot be overemphasised. simultaneously, however, a critical reflection of the activities carried out in this skills-sharing approach reinforces the community based rehabilitation (cbr) principle of building upon the assets or resources already in the community and indicates that a little goes a long way. the synergy of basic communication science, the will and motivation of the carers and the positive reinforcement of enhanced responsiveness and communication with children with severe and profound disabilities indicate some important possibilities. student training in the field of communication sciences and disorders (speech therapists) – as well as other rehabilitation disciplines – needs to address the preparation of students for the increasing needs related to severe and profound disabilities, especially in the field of intellectual disabilities. more alternatives to individual therapy models, including cbr strategies and training and, moreover, the enskilling of speech therapists to provide contextually appropriate carer training at grassroots levels need to be addressed both in undergraduate training and in continuing professional development inputs. furthermore, speech therapists’ collaboration with community-based rehabilitation workers in terms of carer training holds great potential for covering the extensive training needs newly opened up by the recent high court ruling that children in special care centres will receive appropriate stimulation and/or educational inputs (western cape high court 2011). formal research is needed to explore and evaluate aspects of such an on-site communication training approach. the need is crucial, to present an evidence base for more effective, efficient, relevant and sustainable strategies of empowering centre-based carers to provide optimal communication opportunities and support, for the children in their care to enjoy the basic human right of personal interaction and communicative participation, whatever the severity of their disability. acknowledgements top ↑ my heartfelt thanks to the carers working in the informal and formal special care centres in the western cape, from whom i have learnt so much. thank you too, to the following organisations who have afforded a variety of rich opportunities to explore the needs, possibilities and models of best practice in hands-on training in basic communication development, in the centres under their care: cape mental health society, chaeli campaign, western cape forum for intellectual disability and also shonaquip/uhambo foundation and the western cape cerebral palsy association. competing interests the author declares that she has no financial or personal relationship(s) which may have inappropriately influenced her in writing this paper. references top ↑ acpf, 2011, children with disabilities in south africa: the hidden reality, the african child policy forum, addis ababa.alant, e., 2005, cultural and socio-economic influences on communication, in e. alant, and l.l. lloyd (eds.), augmentative and alternative communication and severe 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november–4 december 2009. footnotes top ↑ 1. the care dependency grant is a government grant (administered by the south african social security agency within the ministry of social development) and is intended to support the primary carer of a severely disabled child under the age of 18. the reality is that the current amount of this grant (zar 1200 – approx. us$ 150) does not cover basic costs and many of these mothers still need to pursue employment to make ends meet. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) carmen venter workwell research unit, faculty of economic and management sciences, north-west university, potchefstroom, south africa lizelle rossouw workwell research unit, faculty of economic and management sciences, north-west university, potchefstroom, south africa citation venter, c. & rossouw, l., 2025, ‘organisational support for employees with dyslexia: an explorative study in south africa’, african journal of disability 14(0), a1597. https://doi.org/10.4102/ajod.v14i0.1597 original research organisational support for employees with dyslexia: an explorative study in south africa carmen venter, lizelle rossouw received: 15 oct. 2024; accepted: 03 mar. 2025; published: 16 may 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: dyslexia is a neurodevelopmental disorder that affects reading, writing and spelling. while it is often identified and accommodated in educational settings, employees with dyslexia (ewd) may still face challenges in the workplace as they continue to struggle with this disability throughout their adult lives. while dyslexia can pose challenges for adults in the workplace, accommodations and support measures are available to help mitigate these difficulties. objectives: this study explored the nature of organisational support provided to ewd within south african organisations. method: this qualitative research study adopted a constructivist paradigm and applied a qualitative descriptive research strategy. the research approach involved conducting 15 (n = 15) semi-structured virtual interviews with ewd. results: employees with dyslexia identified challenges related to dyslexia. some reported efficient organisational support, while others felt it was lacking. many used adaptive strategies to cope with daily difficulties. recommendations were made to improve support for ewd. conclusion: employees with dyslexia’s experiences can inform the development of inclusive policies and practices supporting these individuals. moreover, ewd highlighted the importance of raising awareness and promoting a culture of inclusivity and support for dyslexia within south african organisations. contribution: the study contributes to the literature on dyslexia and the workforce regarding organisational support within a south african context and has captured the need to encourage heightened awareness, empathy and equitable practices within organisations. keywords: dyslexia; adult with dyslexia; employee with dyslexia; organisational support; south african organisations; specific learning disability. introduction dyslexia, classified as a specific learning disability (sld) by the american psychiatric association (2022), poses a global risk to approximately 700 million individuals, potentially leading to lifelong challenges such as the inability to read or write as well as social exclusion (geertseman et al. 2022). the available literature on the impact of dyslexia in the workplace is somewhat limited, especially on office jobs and the cognitive aspect related to performing daily duties in this type of environment (smith-spark, gordon & jansari 2022). a more detailed definition of dyslexia is provided by the international dyslexia association (2022), which states that: dyslexia is a specific learning disability that is neurobiological in origin. it is characterised by difficulties with accurate and fluent word recognition and poor spelling and decoding abilities. secondary consequences may include problems in reading comprehension and reduced reading experience that can impede the growth of vocabulary and background knowledge. (p. 1) organisational tasks such as understanding written reports, producing written work quickly, note-taking, logically structuring a piece of work, over-checking and double-checking work and copying or recalling numbers are severely affected in employees with dyslexia (ewd) because of difficulties with reading, writing and spelling, which are inherent with dyslexia (ed. moody 2015). in essence, a dyslexic individual might experience difficulties in processing information (bartlett, moody & kindersley 2010; del tufo & earle 2020). in addition, as technology and digital communication advance, workplace success is increasingly contingent upon one’s literacy skills, leaving those with dyslexia disadvantaged in the professional sphere (wissell et al. 2022a). considering the challenges ewd face concerning reading, spelling and writing, they face an elevated likelihood of being unable to meet the requirements or deadlines of their workplace, even if they possess the necessary training and qualifications (wissell et al. 2022b). in addition, being dyslexic can lead to significant frustration, especially given that the skills it impacts are foundational within a professional setting (sanderson 2011). in addition to the challenges these employees face, there is also an extreme lack of awareness within the global world, especially in the world of work, where there are common misconceptions, leading to misjudgements and misunderstandings of what a dyslexia diagnosis comprehends (yong, ng & nakayama 2019). those employed, despite being dyslexic, report feeling ashamed and embarrassed about their difficulties with reading and writing, which frequently leads to lower self-esteem and confidence in the organisation (snowling 2019). one significant challenge arises because of lack of information; without a proper understanding of dyslexia, employees might hesitate to seek the necessary support, and organisations could remain unaware of available resources, once again underscoring the importance of promoting dyslexia awareness and available support or accommodations in the workplace (beetham & okhai 2017; sanderson 2011). wissell et al. (2022b) stated that in the absence of sufficient support or accommodations in the workplace, ewd may struggle to meet the requirements laid down in the workplace. failure to obtain organisational support or accommodations can lead to lower performance levels; thus, the dyslexic employee may experience lower levels of well-being (beetham & okhai 2017). research suggests that because of the lack of comprehensive training for employers and managers on effectively collaborating with and supporting ewd, dyslexia remains unrecognised. hence, the onus is placed on ewd to disclose their disability and advocate for the necessary support (o’dwyer & thorpe 2013; thorpe & burns 2016; wissell et al. 2022b). unfortunately, people living with disabilities are disproportionately more likely to struggle to find employment than those without disabilities (wissell et al. 2022a). de beer et al. (2014) point out that there have been improvements in educational provisions for children and adolescents with dyslexia, including assistive technology, time extensions and adaptations such as recorded textbooks and larger fonts; these enhancements have not been as readily evident within the workplace settings. this becomes especially noteworthy as an increasing number of well-educated young adults managing their dyslexia through educational support and adaptions step into comparatively less equipped organisations to provide similar accommodations and assistance, highlighting a noticeable gap between educational institutions and the workplace (de beer et al. 2014). choudhury (2023) stated that the most significant challenges with dyslexia are inadequate assistance in the workplace, limited consideration from higher-level management roles and a lack of concern for different individuals. the code of good practice on the employment of persons with disabilities highlights that providing equal opportunities and reasonable accommodations or support to individuals with disabilities empowers them to contribute their valuable skills to the organisation (department of labour 2015). similarly, south africa’s employment equity act 55 of 1998, detailed in the government gazette (2015), is dedicated to eradicating unfair discrimination and ensuring equitable representation of people with disabilities in the workplace, explicitly emphasising implementing reasonable accommodations (department of labour 2015). willingness on the part of employers to implement supportive measures for employees with disabilities, such as dyslexia, can substantially enhance an organisation’s productivity and overall staff morale (sanderson 2011). however, employers face challenges in supporting ewd. there is no standardised blueprint for supporting ewd, as there are several types and combinations of dyslexia (kirby & gibbon 2018). thus, to truly support a dyslexic employee, one needs to develop an individual-specific support programme (kirby & gibbon 2018). given this individualised nature of support and accommodation requirements for ewd within organisations, it is crucial to determine effective strategies for meeting their unique needs and enhancing their perception of organisational support. the perceived organisational support (pos) model stems from the organisational support theory (ost) and posits that employees will develop their own general beliefs or perceptions concerning how much an organisation values their contribution to the workplace as well as cares about their well-being (kurtessis et al. 2017). according to ost, pos is mainly concerned with the employees’ perceptions of the motivations behind the treatment received from the organisation, whether good or bad (kurtessis et al. 2017). perception of organisational support initiates a process of change, as employees will experience a feeling of obligation to help the organisation reach goals; they will, therefore, expect greater rewards and benefits (kurtessis et al. 2017). favourable employee treatment within an organisation directly influences their pos (maan et al. 2020; rhoades & eisenberger 2002). oubibi et al. (2022) also confirmed a positive relationship between pos and job satisfaction. research also indicates that when employees experience high levels of pos, it could lead to promising outcomes such as high levels of organisational commitment, higher levels of performance and productivity and positive emotions (maan et al. 2020; yu & frenkel 2013). it is evident that when an employee experiences high levels of pos, the organisation will benefit greatly. the pos model was chosen as the basis of this research study to emphasise the importance of providing employees, especially employees with disability, with the necessary support. literature highlights the benefits the organisation will experience when doing so. this study addresses a critical gap in the research on dyslexia. existing literature concentrates on children with dyslexia (cheng et al. 2022; li & bi 2022), students with dyslexia (donato et al. 2022; jacobs et al. 2022), dyslexia and the stigma thereof (deacon, macdonald & donaghue 2022) and the impairments or difficulties associated with developmental dyslexia (liu et al. 2022; protopapa & smith-spark 2022). the perspective of ewd and organisational support remains unexplored (reid, came & price 2008; young & browning 2004). this study aims to investigate the experiences of ewd in south african organisations, specifically, whether they receive support, the nature of that support and its perceived effectiveness. by focusing on workplace support for dyslexic adults, this research seeks to bridge the current knowledge gap and inform best practices for employers. research methods and design study design this research study adopted the constructivist paradigm as its guiding framework. this paradigm was chosen as it seeks to explore people’s subjective meanings and experiences in their natural settings through qualitative research methods (crotty 2016). by adopting the constructivist paradigm, this research study recognised the importance of acknowledging ewd’s diverse perspectives and subjective interpretations. this research also employed a qualitative descriptive approach. sandelowski (2000:336) defines a descriptive qualitative design as a ‘comprehensive summary of an event in the everyday terms of those events’. therefore, this strategy was chosen as it assists the researcher in describing dyslexia and its organisational support within south african organisations. a qualitative descriptive research strategy was the most suitable approach for this research study as it acknowledges the fact that the experience of dyslexia is subject to personal interpretation and, thus, each participant may encounter it differently (doyle et al. 2020). furthermore, it enabled the researchers to present their findings in a manner that closely ties to the terminology used in the initial research questions (doyle et al. 2020). setting this research study did not occur in one particular sector or industry, nor did it explicitly focus on one type of occupation. the research study did, however, require the participants to be diagnosed with dyslexia and employed within a south african organisation. study population a study’s population refers to the complete set of individuals, objects or events that share a common characteristic and are the focus of the study (kivunja & kuyini 2023). this study’s population included ewd. dyslexia is categorised as a sld, which is believed to be a neurodevelopment condition characterised by difficulty producing, comprehending and understanding written language (castillo & gilger 2018). a combination of convenience and maximum variation sampling was chosen as sampling techniques for this study. convenience sampling allows researchers to select participants who are easily accessible (ary et al. 2019). maximum variation sampling is a technique that explicitly selects participants who reflect a variety of traits or viewpoints (patton 2014). the researcher gathered data from employees from various organisations and industries throughout south africa to gain a diverse viewpoint of organisational support for ewd. these sampling methods were chosen as the researcher aimed to capture a variety of perspectives and experiences of the ewd. to be included in the study, the following applied: employees diagnosed with dyslexia individuals employed in a south african organisation for at least 6 months employees fluent in afrikaans or english employees comfortable with computers employees willingness to voluntarily participate in this study the exclusion criteria for this research study included individuals employed less than 6 months in their current organisation and individuals who were only officially diagnosed with dyslexia in the past 6 months. the study aimed for 20 participants but reached data saturation after 12 interviews. three more interviews were conducted to ensure quality data, resulting in a final sample size of 15 (n = 15). the sample size was guided by data saturation and the criteria laid down by morse (2020) when collecting quality data. data were collected until the phenomenon under study could be comprehensively described. the study participants were primarily middle-aged (42–52 years old, 40%), with a significant portion being young adults (20–30 years old, 33.3%). women were slightly more represented (53.3%) than men (46.7%). afrikaans was the primary language (86.7%), with very few speaking english as their first language (13.3%). the majority of participants (60%) had a diagnosis of dysphoneidesia, while dysnemkinphoneidesia was the second most common (26.7%). after approval for the study from the relevant committees was gained, the researcher contacted the stark griffin dyslexia academy (sgda) to recruit participants. in 2019, sgda’s assessment tool received official recognition from the health professions council of south africa (hpcsa) for its ability to diagnose and sub-categorise dyslexia. stark griffin dyslexia academy incorporates an optional invitation to participate in future dyslexia research studies within their assessment consent form. this upfront disclosure allows individuals to choose involvement at the outset. those interested in being contacted for future research provide their email addresses during the assessment process. the researcher recruited potential participants through a list provided by the academy. this ensured that all participants had a confirmed diagnosis of dyslexia. data collection to gather in-depth information, the researcher conducted interviews using a semi-structured format. because of the participants’ geographical distribution across south africa, virtual video conferencing software was chosen as the most suitable method. recognising that all participants have dyslexia, the option to choose between zoom and microsoft teams provided flexibility in their preferred platform. virtual interviews were conducted in either afrikaans or english to accommodate participant preferences. following data collection, a certified language translator transcribed all interviews into microsoft word documents. the interview questions that were posed included: what challenges do you experience as a dyslexic employee, if any? please elaborate on your answer. how does your organisation provide you, as a dyslexic employee, with the necessary support to adequately do your job? how does your organisation provide you, as a dyslexic employee, with the necessary resources (or aids) to adequately do your job? do you experience the organisational support you have mentioned to be adequate? please provide reasons for your answer. what type of organisational support would help you to do your job effectively and efficiently? is there anything else you would like to share with me? data analysis for this research, a conventional approach to content analysis was chosen. conventional content analysis is a data analysis method that aims to describe and report on a phenomenon when existing literature is limited (hsieh & shannon 2005). using this type of content analysis, the researcher developed categories to organise the collected data. kleinheksel et al. (2020) identified four steps involved in qualitative content analysis, which are: identify units of meaning: during this step, the researcher identified words, a sentence or a statement representing an idea or concept in the data captured. label equivalent units with a code: after the units of meaning were identified, each unit was labelled with a code, between one to three words, which described that specific unit. group similar codes into a category: after labelling the units with a code, the codes somehow related to one another (in content or context) were organised. in the case of many codes, the researcher grouped the codes into subcategories. describe related categories with a theme: related categories, fitted together and represented an underlying meaning, were then grouped and organised jointly and labelled with a theme. the purpose of themes was to ultimately describe behaviours and experiences in the various categories or subcategories. trustworthiness to guarantee trustworthiness, the researcher followed the criterion set out by anney (2014), bryman (2016) and guba and lincoln (1994). this criterion refers to dependability, credibility, transferability and confirmability and was followed throughout this research study, thus ensuring the data and findings’ trustworthiness. credibility credibility guarantees the honest and timely interpretation and analysis of the research study’s findings, ensuring that the data truthfully and honestly represent the participants’ initial responses (anney 2014). the researcher ensured credibility by involving an accredited professional translator to assist with the transcriptions of the virtual interviews. the researcher also ensured that the interviews were transcribed correctly by correlating the interviews with the written interview data. in addition, the researcher also utilised a co-coder to ensure that the data captured were interpreted correctly. the co-coder is an industrial psychologist knowledgeable in qualitative research and analysis. the co-coder employed the exact steps of data analysis as the researcher did. transferability transferability is a term used to describe how beneficial the research study’s results or conclusions are to people in other contexts or how relevant they are to different people’s circumstances (connelly 2016). the researcher enhanced transferability in this study by giving extensive and thorough descriptions of the research background, location and participants and being open and honest about the data analysis. dependability dependability refers to the degree to which the reader can be assured that the data reported are supported by a research study (anney 2014). according to connelly (2016), dependability encompasses the stability of the data over time and the conditions under which the study was conducted. the researcher ensured the dependability of this research study by keeping process logs. the process logs are the researcher’s notes regarding all activities and decisions made during the research study. conformability confirmability refers to the extent to which other researchers can verify or corroborate the findings of a research study (anney 2014). furthermore, connelly (2016) states that confirmability pertains to the consistency of results and their potential for replication. overall, confirmability aids in ensuring that the data of the research study are accurate, concrete, verified and free from imaginative elements. it was a priority for the researcher to report on the responses and opinions of the participants in an honest, objective and accurate manner, thus ensuring that the data accurately represent the participant’s responses. the researcher prioritised remaining objective and neutral throughout the research study to reduce or eliminate the effect of potential investigator bias. ethical considerations this research received ethical approval from the economic and management sciences research ethics committee of the north-west university (ethics number: nwu-01839-22-a4). ethical principles such as informed consent, voluntary participation, withdrawal rights, confidentiality and anonymity were followed. results this section presents the comprehensive findings of this research study. five categories were identified: dyslexia-related challenges; organisational support; sufficiency of organisational support; adaptive strategies; and recommendations. figure 1 outlines the characteristics and pseudonyms used for the ewd who participated in this research study. figure 2 provides an overview of the categories and themes extracted from the collected data. figure 1: pseudonyms and characteristics of employees. figure 2: overview of themes – participant data. theme 1: dyslexia-related challenges negative perceptions most of the employees mentioned that a negative perception surrounds a dyslexia diagnosis. they further elaborated by stating that people often believe dyslexia is associated with stupidity, being unintelligent or incompetent: ‘i am trying to think, i know that especially in education, it is quite difficult when you have dyslexia because everyone thinks you are a paw-paw.’ (pomeranian) ‘i think my biggest concern about dyslexia is that people think we are stupid. i wish someone would put an advertisement on tv at eight o’clock in the evening so that the whole world could see we are not stupid.’ (jack russell) ‘dyslexia does not equal stupidity.’ (labrador) lack of confidence some employees indicated that they often doubt themselves, thus causing them to believe that they have made a mistake either in the written work produced or in comprehending what was read. in addition, some of them have mentioned that they feel ashamed because they make spelling mistakes, which is not supposed to be like that: ‘so that has made it difficult because i now have to generate something and give it to them, and i am not confident with my language use.’ (basset) ‘i get so frustrated at times that i doubt myself many times.’ (french bulldog) ‘i cannot spell well, so i feel terribly embarrassed because i am actually in a professional profession.’ (jack russell) source of stress multiple employees indicated that being dyslexic is a source of stress for them. they often experience high levels of stress or anxiety when confronted with strenuous deadlines or when they, for example, have to read or write in the presence of others: ‘the other issue i have is reading, a big problem for me because i am a teacher, and i often have to read aloud. but when i read to the children, i become anxious, affecting me as well. it creates much tension.’ (jack russell) ‘do not ask me to do it for you in a week because i will not be able to, and the stress you put on me by asking to do it in a week will mean i cannot get anything done.’ (husky) ‘the stress one experiences because sometimes the workload is hefty, so you rush to finish everything on time.’ (yorkshire terrier) difficulties with spelling various employees indicated that spelling and reading are among the most significant challenges they experience daily. they further elaborated by stating that they prefer working on a computer because it is easier to ensure that your spelling is correct. upon probing these ewd, they explained that this is because of them having spellcheckers on their computer, which assists them with their spelling, thus ensuring that the words are spelt correctly: ‘i have to type the word “there”, and i am forty-three and do not know which “there” is which “there”, and i come across “which”, and i do not know which “which” is which “which”.’ (basset) ‘do not ask me to write you a report, if they want something written, i would say wait a little bit. i grab my laptop; it is embarrassing if you cannot spell.’ (dachshund) ‘okay, i think my biggest challenge is easy, well, it is spelling.’ (jack russell) difficulties with reading many employees indicated that their most significant struggle is reading, including the speed at which they read and completely comprehending what is being read: ‘reading is exhausting.’ (pug) ‘my reading ability is slower.’ (poodle) ‘so, for me, it is a challenge, the speed at which i read.’ (basset) ‘i can recall how sometimes i have read something over six hundred and twenty times, and i still ask, “what the hell does this say?”.’ (pitbull) unable to convey messages some employees indicated they needed help to convey the correct information or message in written form. frequently, it makes sense in their head, but as soon as someone else reads it, it either does not make sense or the context is incorrect: ‘i think the challenge is to write it down correctly so that everyone can understand.’ (yorkshire terrier) ‘and again, in the workplace itself, you receive email after email, and you have to respond, but sometimes you think, “okay, i will give this answer”, and then it is completely wrong because it has nothing to do with the question.’ (pitbull) ‘the spellcheck program indicates that i spelt the word correctly, but it is the context that’s wrong.’ (pug) decreased completion of tasks several employees indicated that because of the struggles of being dyslexic, it takes them much longer to complete specific tasks. they also mentioned that it takes them longer because they constantly double-check their work: ‘of course, it takes me much longer than someone without dyslexia, to do the same work.’ (french bulldog) ‘okay, this is a bit more difficult for us than for an ordinary person because now you have to double-check everything.’ (dobermann) ‘i have conditioned myself to read things two or three times just to make sure i read correctly the first time or the second time.’ (poodle) ‘pressure for time deadlines is always an issue because i always need more time than other people, as i cannot get through it because it is so much harder work for me.’ (jack russell) theme 2: organisational support the research investigated organisational support for ewd. employees with dyslexia reported on whether they received support and, if so, what kind. this data yielded the following themes: no support from the organisation most employees indicated that they do not receive any support from their organisation. some of them further explained that they would purchase it themselves if they needed support regarding their daily work life. employees with dyslexia further explained that they would frequently purchase laptops with specific software such as spell checker or text-to-speech and speech-to-text programmes to assist them: ‘no, there is not any support.’ (boston terrier) ‘you know, i asked, and there is not, not for dyslexia.’ (husky) ‘no, not at all, there is nothing like that.’ (chihuahua) ‘no, not at all, i buy my own things like grammarly, i buy it myself.’ (basset) assistive technology some employees explained that the support they receive is in the form of assistive technology. upon further analysis, it was found that this assistive technology consisted mainly of laptops or text-to-speech software: ‘they gave me a computer.’ (dachshund) ‘there is an option where you can get audio on the documents, where they read it for you.’ (poodle) colleague support multiple employees indicated that they primarily receive support from their colleagues in the workplace. various examples of this type of colleague support were identified, including being able to ask for assistance when required, colleagues proofreading or double-checking work and, lastly, reading written work out loud: ‘i have the confidence now to tell him, “here is what i am going to send for everyone to proofread, please check it for me.”’ (basset) ‘if i stumble or if there is something i do not understand, then i can ask them, and they help me.’ (bulldog) ‘there is always someone willing to just check for me whether everything is correct.’ (yorkshire terrier) supervisory support some employees suggested that their supervisors support them. many employees indicated that their supervisors give them additional time or assist them by correcting or pointing out mistakes. furthermore, some employees explained that when their supervisor understood what a dyslexic diagnosis entails, they felt confident enough to ask for assistance if and when required, regardless of the context: ‘they were very generous with additional time.’ (labrador) ‘yes, they always give me extra time.’ (dachshund) ‘if i am struggling with something, i can just buzz her, or i just walk over to her office.’ (pug) ‘just that empathy is already enough for me.’ (pitbull) theme 3: sufficiency or insufficiency of organisational support employee perceptions of organisational support varied. while some felt it was sufficient, others expressed concerns about its adequacy. insufficient various employees mentioned that they perceive the support to be insufficient. they further explained that they believe more can be done to support them. some employees noted that they would like to see more support offered to them. however, they do not want to come across as selfish, or they might feel uncomfortable asking for additional support: ‘no, it is not sufficient. i feel they can do more to help us.’ (husky) ‘i would want more, but not in a selfish way.’ (pomeranian) ‘no, i think they can do more. the thing is, they help many other people who are in a wheelchair or something but do not use it.’ (boston terrier) sufficient several employees identified the support they received as sufficient. however, some employees explained that they feel it is their responsibility to ensure they have the necessary tools to succeed. others also mentioned that although there is no support in the sense of, for example, assistive technology, their employer understanding their condition and having empathy towards them was sufficient: ‘i think it is adequate support.’ (labrador) ‘more than adequate, yes.’ (dachshund) ‘the assistance i receive from the employer is good enough for me because i am not afraid to ask.’ (poodle) ‘i would say, in my opinion, it is, yes. so, my feeling is i do not want to burden the work with the fact that i read slowly or that i cannot spell.’ (basset) theme 4: adaptive strategies while not directly addressed in the interview questions, a recurring theme emerged: ewd independently adopted various strategies to improve their work experience. these strategies included acquiring assistive technology such as laptops, recording devices and reading pens (c-pens). software programmes such as spell checkers, speech-to-text and text-to-speech tools, grammarly and predictive text were also mentioned: ‘and by god’s grace, the voice-to-text technology has become so many leaps and bounds forward that even on this telephone that i am talking to you on now, i can press the microphone, and i can dictate into text for the phone, so i do not have to send a voice note when i have a long-winded message to send. that is the most wonderful thing available.’ (labrador) ‘you find coping mechanisms, for example, with my spelling, i have three spell checkers that i use.’ (husky) ‘i buy my own, like grammarly, i buy it myself, and i use it.’ (basset) theme 5: recommendations employees provided recommendations for improvements to identify preferred support structures. these suggestions aimed to enhance both effectiveness and efficiency in the workplace. the following themes emerged from the data: appointing a colleague as a proofreader several employees mentioned that they have the ability and skill to do the work. however, spelling is still a problem and needs improvement. they further explained that if they had someone within the organisation who could act as a language facilitator or proofread their work, it would be a great help: ‘you know, almost a bit like a language facilitator because i can do the work.’ (jack russell) ‘if i could have had someone, maybe, to read through my work again.’ (french bulldog) assistive technology multiple employees mentioned that implementing assistive technology would make them more effective and efficient. the assistive technology mentioned consisted either of software (e.g., text-to-speech programmes, speech-to-text programmes, grammarly and dragon naturallyspeaking) or hardware (e.g., a reading pen or a recording device): ‘you know, if we are talking about aids, then i would tell you something simple like a grammarly license.’ (husky) ‘you know my biggest thing is speech-to-text technology that works across various platforms.’ (labrador) ‘like a pen or a thing that can read it for you.’ (pug) ‘when i can rather record a meeting on an audio recording and then play it back for myself.’ (pitbull) promote dyslexia awareness in the workplace employees with dyslexia emphasised a need for greater awareness within organisations. employees with dyslexia believed that increased understanding among employers and colleagues would unlock their full potential. a recurring theme was the misconception that dyslexia is solely a childhood condition, further underlining the importance of awareness initiatives: ‘because i have long thought that people are not good enough; that is why we work so hard in everything we do. so, i think employers should understand that, too. i think they would be amazed by what these people can mean to them.’ (french bulldog) ‘you go to university, and you still struggle with your stuff, and in the workplace too. so, i think the problem is people think dyslexia only goes up until school.’ (pug) ‘i lived under the illusion of what dyslexia means, but i have it and i did not realise, so definitely awareness.’ (husky) provision of additional time most employees mentioned that merely being presented with additional time to complete tasks would greatly assist. employees explained that they want additional time as it takes them longer to read and spell correctly. it was mentioned that additional time is especially required when the employees have to produce written work or complete paperwork: ‘basically, to give me a bit more time on certain things, especially when i have paperwork and things to write out.’ (dobermann) ‘like they can give me their extra time.’ (chihuahua) ‘because it takes me a long time to read and spell, i think it would help me a lot if i could get more time to do my work.’ (boston terrier) discussion the general objective of this research study was to explore the organisational support provided to ewd within south african organisations. although not part of the initial objectives of the study, ‘challenges related to dyslexia’ emerged as an incidental finding and will be discussed as a theme. this theme provides valuable insights into the perspectives of the dyslexic workforce within south africa. hence, this information was asked during the interview to obtain a clearer picture of each participant’s unique background and experience. challenges related to dyslexia employees with dyslexia frequently reported experiencing a notable decrease in their speed when completing tasks, primarily because of the necessity for double-checking. while essential for ensuring accuracy, the meticulous double-checking had a crucial impact on their overall productivity. a study conducted by greaney (2018) found that dyslexic individuals, because of the awareness of their condition, may naturally adopt a habit of double-checking, thus placing a strong emphasis on accuracy. greaney (2018) further stated that non-dyslexic individuals might be more susceptible to lower vigilance levels than their dyslexic peers. employees with dyslexia may experience difficulties with reading fluency and comprehension, leading to increased time and effort required for tasks involving written materials. this can hinder their ability to absorb information from reports, documents, and other workplace essentials. our research supports this, suggesting that individuals with learning disabilities, such as dyslexia, often require additional time to accommodate the need for decoding words, which may not come naturally to them (munzer, hussain & soares 2020; nugent & scott-parker 2022). spelling challenges related to a daily hurdle for a considerable number of ewd. many ewd found comfort in working on computers equipped with spell checkers, which ultimately assisted in ensuring correct and accurate spelling. this preference for technology highlights assistive technology’s role in mitigating the challenges faced by ewd. assistive technology is a cornerstone in the functional capabilities of individuals dealing with operational challenges, thus enabling those individuals to actively participate and experience inclusion in all facets of life (world health organization 2022). another significant challenge identified was expressing ideas or messages accurately in written format, as the intended message might not be conveyed correctly. self-doubt and shame periodically surfaced among ewd, particularly in response to spelling mistakes and perceived shortcomings in their work. these feelings of inadequacy not only affected their self-esteem but also impacted their job performance. a study conducted by wissell et al. (2022a) found that ewd frequently struggle to build relationships because of their feelings of shame associated with having dyslexia. furthermore, ewd even mentioned that they often experience a sense of imposter syndrome when they excel in their work (wissell et al. 2022a). many ewd in this research study also expressed frustration regarding the negative perceptions and stereotypes surrounding dyslexia. they often encountered misconceptions that linked dyslexia to incompetence or a lack of intelligence, whereas quite the opposite is true. one of the primary challenges dyslexic individuals face is the social stigma surrounding dyslexia, which can result in emotional difficulties such as anxiety, low self-esteem and frustration (maccullagh 2014). many ewd reported dyslexia and its challenges as a significant source of stress and anxiety, especially during public reading or writing tasks, which could negatively impact their well-being and performance. types of organisational support provided to employees with dyslexia a theme that surfaced from this research study falling within the dimensions of emotional support, as defined by eisenberger and stinglhamber (2011), was the presence of colleague support. key aspects of this support include the ability to ask for help without judgement, colleagues proofreading or checking work and colleagues reading written work aloud. an open and supportive work environment empowers ewd to seek assistance, fostering well-being and potentially improving performance. kirby and gibbon (2018) support this finding by highlighting the importance of developing support networks within an organisation. furthermore, they mention that to support ewd better, organisations should implement a comprehensive approach that combines the availability of peer support for ad hoc assistance with thorough dyslexia awareness training. the study underscores the importance of assistive technology, falling within the dimension of instrumental support defined by eisenberger and stinglhamber (2011), in supporting ewd within the organisation. two key aspects emerged within the theme of workplace accommodations: providing laptops and implementing text-to-speech software. organisations offering personal laptops and text-to-speech tools empower ewd by improving their reading and comprehension abilities. the dyslexia association (2023) emphasises the value of assistive technology for ewd. tools such as mind mapping software, text-to-speech and smartpens can significantly improve their daily work experience. by offering these resources, organisations can empower ewd and enhance their productivity. these assistive technology tools are also better known as augmentative and alternative communication (acc) (beukelman & light 2020). augmentative and alternative communication refers to a collection of tools and strategies individuals use to address daily communication challenges such as speech and writing international society of augmentative and alternative communication [isaac] 2011). different types of acc exist, such as no-tech, low-tech and high-tech options. high-tech options include using apps on tablets or ipads to communicate and speech-generating devices (american speech-language-hearing association 2025; beukelman & light 2020). in the context of acc, strategic competence also refers to the ability of individuals to utilise various strategies to effectively overcome the challenges that they are experiencing when communicating (beukelman & light 2020). in a study conducted by mcnaughton, light and gulla (2003), it was found that when employees use acc within the workplace, it may lead to increased loyalty, performance talents and skills. this study highlights a lack of support for ewd in some workplaces. the absence of accommodations can negatively impact performance, increase absenteeism and limit employee abilities (prince 2017). reinforcing this, morris, begel and wiedermann (2015) found that a vast majority (94.1%) of ewd who disclosed their condition received no workplace accommodations. wissell et al. (2022b) identified a lack of training among employers and managers in supporting ewd. their research suggests that training programmes on dyslexia awareness could improve support and understanding for ewd, colleagues and the entire organisation. these initiatives could also reduce stigma and discrimination. this study highlights the importance of supervisory support for ewd, encompassing both emotional and practical aspects. supervisors can positively impact performance by granting extra time, providing constructive feedback and fostering a safe environment through dyslexia awareness. training for line managers on supporting ewd and raising dyslexia awareness within the organisation is crucial (kirby & gibbon 2018; wissell et al. 2022b). effectivenessof organisational support provided to employees with dyslexia this research study revealed various perspectives among ewd regarding the sufficiency or organisational support received. some ewd indicated that they are satisfied with the support received and that it is sufficient, emphasising their willingness to ask for assistance when required. these ewd conveyed that they perceive the support as sufficient because they feel comfortable and safe enough to seek assistance, such as help with reading, whenever needed. they noted that their colleagues and employers consistently are willing to provide that assistance. employees with dyslexia further mentioned that the support was sufficient, enabling them to overcome challenges effectively. however, many of them believe the existing support fell short of their needs. they highlighted the fact that the organisation could take additional measures to comprehensively accommodate ewd. within the subsequent objective discussion, ewd explained why the existing support may have fallen short of their needs. in addition, they also made recommendations and suggestions on how organisations can address their specific and unique needs. interestingly, some ewd drew attention to the discrepancy between the support provided for physical disabilities (e.g., wheelchair accessibility) and that for dyslexia, a blind disability. these discrepancies emphasise the need for organisations to recognise and address the invisible nature of dyslexia-related challenges. notably, the employment equity act 55 of 1998 in south africa states that all employers and organisations must implement and provide reasonable accommodations for the south african workforce with disability regardless of the type of disability an employee presents (department of labour 2015). according to the british dyslexia association (n.d.), when implementing reasonable accommodations, organisations must assess the nature and severity of the individual’s dyslexia, consider the job role and its prerequisites, which can be performed through a workplace needs assessment, evaluate the impact of the working environment and address the requirements for associated training. the law, therefore, mandates the implementation of reasonable accommodations for individuals with disabilities, thus emphasising organisational compliance and adherence to these requirements. adaptive strategies although no specific question was posed to the ewd during the interviews, an interesting finding revolved around the adaptive strategies employees with dyslexia independently developed or implemented to navigate their work environment and daily work-related tasks more effectively. the theme of assistive technology emerged. to clarify, the earlier mentioned assistive technology pertains to technology provided by the organisation. in contrast, adaptive strategies involving assistive technology refer to tools and solutions that ewd have personally acquired or implemented to enhance their daily work life, distinct from offerings provided by the organisation. employees with dyslexia detailed their use of various hardware and software tools to mitigate the impact of dyslexia on their tasks. hardware devices such as laptops, recording devices and c-pens emerged as valuable tools for note-taking and information retention. software-based adaptive strategies played a crucial role as well. spell checkers, speech-to-text and text-to-speech programmes were highlighted for enhancing written communication. employees with dyslexia mentioned using tools such as grammarly and predictive text programmes to ensure accuracy and clarity in their written work. grammarly provides robust real-time communication support, harnessing ai to assist in composing and revising content while enhancing typed work by refining grammar, tone and clarity (grammarly 2023). moreover, it incorporates predictive text, aiding users as they type (grammarly 2023) – a tool that can be extremely useful for ewd in their daily work lives. recommendations by employees with dyslexia to enhance organisational support employees with dyslexia might often struggle with written communication, including spelling and grammar errors and conveying intent accurately, which can be particularly challenging in a professional setting. for this reason, ewd suggested assigning a colleague as a proofreader. a supportive colleague can ensure error-free work while fostering collaboration. research highlights the importance of empathy and collaboration skills in managers for dyslexic employee success (wissell et al. 2022b). it was therefore recommended that to create a supportive work environment, managers be trained on dyslexia and how to effectively support a dyslexic employee. a truly inclusive work environment can be created when managers are supportive and receive training on dyslexia (cullen, darby & rahmani 2019). employees with dyslexia stressed the importance of assistive technology like text-to-speech and spell checkers within the workplace. although expensive to invest in, these tools can boost productivity. they further recommended that dyslexia awareness be promoted in workplaces. this recommendation focuses on eliminating misconceptions and stigmas associated with dyslexia. employees with dyslexia indicated that promoting dyslexia awareness will assist managers and colleagues in understanding their daily challenges better, and they can adapt their communication and expectations while providing adequate support. research suggests a stigma surrounds dyslexia, hindering employment and open communication (alexander-passe 2015). in this study, ewd requested extra time for tasks, acknowledging their slower reading and writing capabilities. this could level the playing field and ensure they can showcase their skills. research confirms dyslexia’s impact on work performance (bartlett et al. 2010; beetham & okhai 2017; de beer et al. 2014; nalavany, logan & carawan 2018) and highlights the need for support to ensure dyslexic employee success. to summarise, dyslexia can significantly impact people’s lives, especially professionally. however, with the appropriate support and accommodations, the challenges faced by ewd can be mitigated, helping them to achieve success in the organisation. south africa’s employment equity act 55 of 1998 outlines the necessity and employer responsibility to implement and provide reasonable accommodations to the south african workforce where required (department of labour 2015). practical implications this research highlights the need for dyslexia awareness training in south african workplaces. open communication about dyslexia is crucial, and organisations should prioritise personalised support plans and assistive technologies to empower ewd. strengths and limitations this qualitative study allowed ewd to share their thoughts and experiences, which is not always possible with quantitative data. this study provided a voice to ewd, allowing their experiences and viewpoints to be heard. the researcher could probe them for answers during the interviews, further enhancing the data’s comprehensiveness. limitations of this study included the limited language diversity. most of the participants were afrikaans-speaking (86.7%), and their experiences may primarily reflect those of afrikaans-speaking ewd, thereby limiting the transferability to other language groups. qualitative research is often viewed as subjective because of the personal interpretations of the researcher when it comes to data collection and analysis. however, the researcher ensured that she remained unbiased and objective when analysing the findings of this study. also, the researcher and co-coder utilised the same data analysis technique. the co-coder also assisted the researcher in ensuring that the interpretation of the results was unbiased and objective. recommendations future research recommendations include a larger, more diverse sample across south africa. quantitative surveys with text-to-speech options to reach a broader audience might be considered. conducting longitudinal studies is imperative to ensure the sustainability and effectiveness of support and accommodation strategies for ewd. these studies can track the long-term impacts of these strategies on employees’ careers, job satisfaction and overall well-being. moreover, any potential barriers or unintended consequences arising from these accommodations can be identified and addressed to refine support mechanisms further. a safe and inclusive workplace culture should be embedded in the organisation’s values and practices. this entails promoting diversity and inclusion at all levels, from leadership to entry-level positions. by fostering a culture that values all employees’ unique perspectives and talents, organisations can create an environment where everyone, including those with dyslexia, can thrive and contribute to their fullest potential. this cultural shift towards inclusivity should be an ongoing commitment, reflecting the organisation’s dedication to supporting all its members. organisations can also consider developing personalised support plans for ewd. investing in dyslexia training programmes for all employees is also suggested. by acknowledging the prevalence of dyslexia and proactively creating a supportive environment, organisations can benefit from the talents of ewd. furthermore, organisations should establish mechanisms for periodically evaluating the effectiveness of support strategies provided. feedback from ewd should be actively sought and used to refine and optimise the tools provided. this approach ensures that the support offered is beneficial and aligned with the evolving needs of these employees. conclusion in conclusion, ewd yielded valuable insights into the multifaceted challenges and opportunities surrounding dyslexia in the workplace. this research has delved into several critical dimensions of this subject, shedding light on various aspects of organisational support, the experiences of ewd and their recommendations for improvement. dyslexia, as a lifelong condition, presents significant challenges in reading, writing and other daily tasks encompassing literacy skills. by understanding dyslexia’s challenges, organisations can create a more inclusive environment where ewd can thrive alongside their peers. this study underscores the importance of understanding the intricacies of dyslexia and how it impacts individuals’ professional lives. employees with dyslexia, like all individuals, deserve an equal opportunity to thrive and succeed professionally, and these findings provide a path forward to achieving this goal. acknowledgements the authors would like to thank the participants for participating in this study and sharing their experiences. this article is partially based on the author c.v.’s thesis titled “exploring the organisational support provided to dyslexic employees within south african organisations” towards the degree of master of commerce in industrial and organisational psychology in the faculty of economic and management sciences, north-west university, south africa on 25 april 2024, with supervisor prof. lizelle rossouw. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions c.v. completed this study as part of her master’s dissertation. c.v. collected, analysed, interpreted and reported the data as part of her dissertation l.r. assisted with the data analysis and interpretation, shortened the article for publication and submitted the final draft. l.r. was the promotor of this study. funding information this research received no specific grand from any funding agency in the public, commercial or not-for-profit-sectors. data availability the data that support the findings of this study are available upon reasonable request from the corresponding author, l.r. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any 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sciences, stellenbosch university, cape town, south africa citation van biljon, h.m. & van niekerk, l., 2022, ‘working in the time of covid-19: rehabilitation clinicians’ reflections of working in gauteng’s public healthcare during the pandemic’, african journal of disability 11(0), a889. https://doi.org/10.4102/ajod.v11i0.889 original research working in the time of covid-19: rehabilitation clinicians’ reflections of working in gauteng’s public healthcare during the pandemic hester m. van biljon, lana van niekerk received: 29 apr. 2021; accepted: 16 feb. 2022; published: 28 apr. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: when the coronavirus disease 2019 (covid-19) pandemic manifested in south africa, rehabilitation services were seriously affected. the consequences of these were wide-ranging: affecting service users, their families and caregivers, rehabilitation practices and practitioners as well as the integrity and sustainability of rehabilitation systems. objectives: this study aimed to explore the nature and consequences of disruption caused by the pandemic, based on the experience of rehabilitation clinicians who were working in public healthcare facilities in gauteng. methods: this was a phenomenology study that used critical reflection method. trained and experienced in reflecting on barriers and enablers that affect their practices, a multidisciplinary group of rehabilitation clinicians captured their experience of working during the time of covid-19. data construction extended over 6 months during 2020. an inductive thematic analysis was performed using taguette: an open-source qualitative data analysis tool. results: the main themes captured the disorder and confusion with its resultant impact on rehabilitation services and those offering these services that came about at the beginning of the pandemic. the importance of teamwork and leadership in rehabilitation also emerged as themes. other themes related to having to approach work differently, working beyond professional scopes of practice and pandemic fatigue. conclusion: the covid-19 pandemic disrupted the way rehabilitation was being performed, creating an opportunity to reconceptualise, strengthen and improve rehabilitation services offered at public healthcare. the presence of effective leadership with clear communication, dependable multidisciplinary teams and clinicians with robust personal resources were strategies that supported rehabilitation clinicians whilst working during covid-19. keywords: rehabilitation therapists; persons with disability; pandemic; public healthcare users; covid-19; disorder and confusion; reflective practice; inter-professional communication; disaster; leadership; personal protective equipment; multidisciplinary rehabilitation team. introduction when disaster, in any form strikes, vulnerable individuals in a community suffer the most (pedersen 2002). children, older adults and persons with a disability are identified as vulnerable populations (murthy & lakshminarayana 2006) and are frequent users of rehabilitation services. the world health organization’s (who) stand on rehabilitation (who 2020b) is that it is an important part of universal health coverage and a key strategy to ensure healthy lives and promote well-being for all (united nations 2015). a who survey (who 2020a) observed that a national disaster, such as the coronavirus disease 2019 (covid-19), disrupts existing rehabilitation services and has the greatest impact on the most vulnerable populations and the weakest health systems. they acknowledge that whilst the important role of rehabilitation in emergencies is recognised in clinical and humanitarian guidelines, it is rarely considered as part of health system preparedness and early response. the result is that pre-existing limitations in rehabilitation services are magnified, health service delivery is less efficient and people directly affected are at risk of increased impairment and disability. in march 2020, when the covid-19 pandemic surfaced in south africa and a national state of disaster was declared (ramaphosa 2020), rehabilitation was severely disrupted. realisation of the magnitude of the challenge faced by rehabilitation practitioners and their patients unfolded and an email (friday, 17 april, 17:54) sent by the health professions council of south africa (hpcsa) to all its members, captured the situation: the covid-19 pandemic calls upon health practitioners to operate under extraordinary circumstances that fall beyond the current regulatory framework. healthcare practitioners find themselves on the frontline of the outbreak, selflessly caring for sick and anxious patients, with some practitioners already contracting the virus. the declaration of the state of national disaster in terms of the disaster management act requires practitioners registered under the health professions act 1974 (the act) and other health statutory councils to meet challenges which our regulatory framework must accommodate. (hpcsa team 2020) the south african healthcare system has been characterised by a stark public–private divide (keeton 2010) that was created by institutional segregation policies half a century ago. this divide is still prevalent despite governmental efforts to foster universal access to healthcare with attempts that include charters, policies and strategies (malakoane et al. 2020). south africa’s public healthcare serves 84% of the population and faces numerous quality improvement challenges (maphumulo & bhengu 2019). in addition, it carries the burden of care for communicable diseases such as tuberculosis (tb) and human immunodeficiency virus (hiv), which are particularly high amongst groups with limited socio-economic means (ataguba, akazili & mcintyre 2011). during the covid-19 pandemic the situation prevailed; on 10 april 2020, a month after the pandemic brought about a state of national disaster in south africa, the number of critical care beds nationally stood at 3318, of which 2140 were in the private sector (labuschaigne 2020). the rehabilitation services in public healthcare were not exempt from this situation. prior to the pandemic there were concerns that rehabilitation services in south africa were not seen as a healthcare priority, especially so in the resource scarce public healthcare system (morris et al. 2021). during the initial stages of the pandemic, when lockdown restrictions were most severe, vital disability specific services were not deemed ‘essential’. concerns prevailed that covid-19 policies and practices continued to exclude people who require rehabilitation (mckinney, mckinney & swartz 2020). a survey by the who (2020a) confirmed that in many countries rehabilitation services were deliberately suspended by governmental covid-19 protocols. such services were further affected by policies limiting or suspending outpatient services and offering only select inpatient services and community-based care. the lasting impact of the covid-19 pandemic on health services, including rehabilitation, is a source of concern with the likelihood of serious adverse health effects on vulnerable populations, such as children, older persons, people living with chronic conditions or disabilities and minority groups. with the pandemic came a singularly unique opportunity to capture and learn from the experience of rehabilitation practitioners operating under conditions that past and current regulatory frameworks could not anticipate. using reflective practice to capture contextual experience is well documented (knightbridge 2019) and as frequently cited progenitors of reflective practice, dewey, schön and mcallister’s work document its value in diverse, multicultural education and healthcare environments (mcallister et al. 2006). reflection is also a fundamental element in evidence-based practice (mantzoukas 2008) and widely incorporated into undergraduate healthcare curriculums (brown, cosgriff & french 2008). in its simplest form, reflective practice is the ability to reflect on actions and experiences and engage the results of these reflections into processes of learning and professional improvement (farrell 2018). evidence generated through reflective practice is contextually grounded and has become an influential concept in healthcare (fragkos 2016). within the rehabilitation health sciences there are numerous calls for the promotion of reflective practice. myezwa et al. (2017) found it improved accountability and learning amongst physiotherapy students and calls for strategies to develop reflective practice. reid (2009) observed the importance of reflective practice in clinical occupational therapy and called for a culture of mindful practice to be cultivated in the profession. caty (2014) recorded a considerable need for initiatives involving reflection and reflective practice in speech–language professions. this research was undertaken to capture the reflections of a group of multi-disciplinary clinicians offering rehabilitation in the south african public healthcare system during a time of extreme disruption. these in action reflections were expected to contain valuable insights that could be used to refine the conceptualisation of rehabilitation and to inform and improve rehabilitation in terms of service, education, leadership and management. research methods and design researcher positionality since 2017 the occupational therapy division at stellenbosch university and the gauteng health public sector have had a research liaison that saw four research projects to conclusion. the projects involved multiprofessional teams of rehabilitation clinicians working in various public healthcare facilities. the authors of this article, a post-doctoral fellow and her professorial host, conceptualised and facilitated the research projects. all of which required face-to-face interaction with participating clinicians at the clinical facilities where they worked. in 2019 the principal author had trained and equipped participants in real-time workshops at their clinical practices for a research project titled: reflections on practicing in gauteng’s rehabilitation services. participants in this research, who had given informed consent, were supported, regularly followed up and debriefed on conclusion of the data collection phase in november 2019, by the post-doctoral fellow. march 2020 saw the extension of the same research with a focus change to practicing during the pandemic, involving the same researchers and participants. study design and paradigm this phenomenology research design saw practicing rehabilitation professionals engaging in a critical reflection method, reflecting on their lived experience of working in the time of covid-19. numerous reflective practice tools and models have been developed and are used in healthcare to help professionals reflect on their practices (fragkos 2016). most of them incorporate three key elements: to identify, describe or review a situation or action, to explore or examine this from differing angles or viewpoints and to act or plan for action. with knowledge and experience of working in public healthcare rehabilitation practices the researchers decided to choose a simple and easy to use reflection process, as found in kolb’s experiential learning style theory (kolb 1984). kolbs’ theory was used in the training of physiotherapy – (aldegether 2017), occupational therapy – and speech and hearing students (brown et al. 2008). his reflective cycle of concrete experience, reflective observation, abstract conceptualising and active planning/learning (mcleod 2017) and has also been used in clinical rehabilitation practice (knightbridge 2019). setting in 2019, physiotherapists, assistant physiotherapists, occupational therapists, occupational therapy technicians and assistants, podiatrists, speech and hearing therapists, speech therapists and audiologists, working in public healthcare facilities were recruited and trained to reflect on their practices. the aim of the research was to identify barriers and enablers that affected their rehabilitation practices. in 2020, when the covid-19 pandemic became evident in south africa, a participant suggested continuation of reflective practice with a focus on working during the pandemic. other participants confirmed the need, to capture and share their unique experiences. gauteng health head office and ethical clearance was received for the amended and extended research project. as a result of pandemic restrictions all contact between researchers and participants was in the form of electronic and telephonic communication. research population and sampling strategy a convenience sample was obtained by inviting all participants involved in the 2019 research to participate. all participants employed by gauteng health public sector, underwent training in reflection and had experience of professional reflection. recruitment was performed via e-mail communication containing information on the amended and extended research project, a consent form and an invitation for participation. in cases of no response to the initial e-mail, follow-up communication was performed to ensure that participants received the information. clinicians who volunteered to take part in the research signed consent forms. the two researchers, authors of this article, were employed by stellenbosch university and had no association with gauteng public healthcare. data collection, processing and analysis participating clinicians were assigned personal research codes, provided with an electronic reflection guide (e.g. refer to appendix 1) and instructions on submission of their reflections to the researcher. participants were asked to reflect once a week and to capture these electronically. reflections could comprise once-off experiences or be further expanded and developed in subsequent reflections. a target of at least 10 reflections was set. the first author developed the reflection guide, adapting it from the 2019 research that was extended. the researchers had prior experience in action research (coetzee et al. 2011; van biljon 2016) and the use of professional reflection in public healthcare research (van biljon, casteleijn & du toit 2015). data collection comprised completion of demographic details, reflection in practice, which was guided by a reflection guide (e.g. see appendix 1) and field notes taken by the first author during once monthly email and telephonic follow-up and support conversations with participants. participating clinicians reflected over 6 months from 14 april 2020 to 30 october 2020 and captured 130 reflections. during this time, they were followed up and supported by the first author through electronic communication. the two authors were the data coders and themes were not proposed in advance but derived from the data. demographic data were summarised using descriptive analysis. reflections and field notes were imported into taguette, a free open-source text tagging tool for qualitative data analysis, where they were analysed using inductive thematic content analysis. creswell’s fully integrated analysis and integration approach was used (cresswell 2013). trustworthiness credibility was enhanced by using a reflection guide that was used in and refined in a similar research project study with the same participants. a clear audit trail and transparency was maintained during all phases of the research. confirmability was obtained through individualised, prolonged engagement andcoding of the data. three forms of data triangulation were done; time and space triangulation involved collection of data at different intervals and in several settings whilst person triangulation was done by collecting data from various participants. transferability of the data should be judged with caution and consideration of the south african context. south africa is an upper-middle-income economy with limited rehabilitation services available to uninsured public healthcare service users. however, the disrupting impact of the covid-19 pandemic and subsequent restrictions experienced might be similar in many countries across the globe. ethical considerations ethical considerations included the risks associated with professional reflections. confidentiality and autonomy of participants was a priority with only the first author having access to identifiable information that could link reflections to participants; personal research numbers were used on reflection forms to ensure cohort anonymity. participants, who signed consent forms, were informed of their right to decline participation at any time without consequences, and given the opportunity to ask questions, discuss and contemplate their participation. compliance with the principles of the declaration of helsinki was prioritised throughout the research. stellenbosch university’s human research ethics committee (hrec) provided ethical approval (ref no n18/01/113) for the amendment and extension of the research. gauteng healthcare’s research committee approved the research with ref no: drc ref 2018-03-008, and the research was registered on the south african national health research database (ref. no gp201802022). continuing professional development (cpd) points were awarded to participants who did not receive any other form of remuneration. findings of the 75 participants who were invited, 19% (n = 14) volunteered, were informed regarding the research, signed consent forms and provided demographic information. on conclusion of the data collection phase, eight rehabilitation clinicians (57% compliance) submitted reflections. reasons for non-completion provided by the six participants who did not complete data collection, were inertia and feeling overwhelmed. demographic details of the eight clinicians who completed data collection show a gender distribution of one male and seven females, the average age was 40 years (range 26 – 58) and all were south african citizens. reported home languages were english (n = 4), afrikaans (n = 2), isixhosa (n = 1) and sepedi (n = 1). professions represented were occupational therapy (n = 5), physiotherapy (n = 1), podiatry (n = 1), speech and audiology (n = 1). all had tertiary-level qualifications with an average of 18 years’ clinical experience (range 2–40). all participants worked in tertiary healthcare facilities: one performed only management functions, two combined management with clinical responsibilities, the rest were clinicians. for the quotes, the three unique identifiers were used in brackets: (1) an indicator of the origin of the quote e.g., date of the reflection or field notes which were undated summaries or notes made by participants or researchers; (2) participant code and (3), occupation – using the hpcsa identifier of such. field notes by the first author, disclosed reasons why participants were working where they were and to what extent their work had changed. the most prominent reason for working in public healthcare was related to the type of service users they were seeing: ‘[… h]ere i can be of the most benefit to the community and … to make a difference in the lives of vulnerable people.’ (field notes, a1, ot) public healthcare also offered them the opportunity to work in large multidisciplinary teams, learningand experience opportunities, the security of a steady income and having fixed working hours were also mentioned. on conclusion of the research, they were asked if their work had changed since the pandemic and 60% (n = 5) reported changes to the type and volume of work they did. those who felt their work had only changed partially held management posts. the changes reported were reduced patient loads and having to assist with pandemic-related tasks such as working at screening stations. at some institutions’ rehabilitation personnel were told to work reduced hours and a clinician reported: ‘so many people have lost their jobs because of covid-19 and i started feeling really guilty that i am only working 2 days a week and still getting my full salary.’ (field notes, ba1, sta) from the clinicians’ reflections three dominant and several minor themes emerged, namely disorder and confusion, impact on rehabilitation services and impact on personal well-being of rehabilitation practitioners. in addition, mitigating factors and evidence of pandemic fatigue came to light. theme 1: disorder and confusion the disruption and uncertainty brought by the covid-19 pandemic was pervading every aspect of participants’ professional and personal lives. the sense of disorder and confusion that resulted was evident in participants’ reflections, underlying most of what they were experiencing on a day-to-day basis. the reflection by one of the manager participants aptly captured the emotions experienced during the first months of the pandemic: ‘anxiety and fear were the reigning emotions. staff were convinced they had all had some contact with patient. the irrational thoughts and messages between staff caused such mayhem. made us aware how fully unprepared we were to deal with the inevitable. it took calm and at some points an authoritarian response to have people actually listen through their fears and understand protocols and procedures. i myself had a sense of hopelessness come over me at some point and needed to take some time just to re-centre and face the onslaught of the fear mongering.’ (april 2020, rm2, pt) there were reports of mandatory personal protection equipment (ppe) running out, frustration and anger about corruption and the misuse of resources. reflections captured participants’ fear that the systems for implementation of covid-19 regulations caused confusion and were ineffective: ‘entering the hospital continued to be an early morning frustration as some days i was told to move my parking, other days i was told to wait in a queue and most days the hermometer did not work!’ (june 2020, amh1, ot) a participant with management duties reported: ‘staff are anxious and unsure of what they are exposed to, what their role is, how safe they are. i spend a lot of time to calm them down ….’ (march 2020, rm4, ot) practicing outside the scope of professions’ normal practice required additional training and caused anxiety. rehabilitation practitioners were required to assist in the swabbing tents, where screening and testing for covid-19 was done. in the reflection below a clinician shares the challenges associated with learning to take a swab: ‘i was shaking so much i missed the nostril and poked them in the face.’ (may 2020, ba1, sta) theme 2: impact on rehabilitation services the negative impact of the pandemic and restrictions imposed to deal with it affected participants’ ability to render rehabilitation services. certain types of rehabilitation interventions such as vocational rehabilitation, group sessions, family meetings and caregiver training were restricted or were not possible to offer. clinical student supervision was severely restricted. interventions that rely strongly on verbal communication were especially affected: ‘i have found that it is incredibly difficult to render quality speech therapy with full ppe on. the nature of communication therapy involves a lot of talking or the patient needing to see your mouth. this isn’t possible with full ppe. the patient is also wearing a surgical mask, which you remove for parts of your assessment but needs to be worn for others making it really difficult to hear the patient.’ (july 2020, ba1, sta) concerns related to patients being discharged prematurely, outpatient clinics closing, outpatients arriving for rehabilitation appointments and being refused entrance to the hospital were recorded. patients were also reported to be scared of coming to hospital, which further affected follow up and raised concerns about compliance. a participant reported: ‘i deal mostly with diabetics’ feet. if my patients cannot see me there is going to be lots of complications.’ (may 2020, jh5, ch) theme 3: impact on personal well-being the magnitude of disruption brought by the pandemic had a direct and enduring personal impact on participants. fears, confusion and concerns for the safety of patients, family and friends and participants themselves were a strongly evident theme underlying participants’ reflection. none of the participants had tested positive for covid-19 during this research period, with three of them responding not yet to the question. there was a tone of resignation that showed during a supportive follow-up conversation: ‘[…i]t is not if we are going to get it but when.’ (field notes, a1, ot) they were anxious about contracting the virus and apprehensive about the possibility of them infecting their patients or families: ‘thankfully, my results were received this evening and they were negative. first thing i did was hug my kids.’ (may 2020, rm2, pt). there were also concerns about family members who had contracted covid-19 and regrets of not being able to attend funerals, religious and cultural ceremonies. minor themes: mitigating factors, pandemic fatigue and the effect of reflection practice several mitigating factors came to light that supported and strengthened rehabilitation clinicians, as a group, but also individually. the importance of the rehabilitation team and leadership was illustrated with both positive and a negative reflection. absent or inconsistent leadership led to poor communication and contributed to the confusion and anxiety as shown in the reflection by one of the clinicians: ‘lockdown is announced. this was very uncertain. we were not given any indication from our managers/supervisors whether we are still working, frequency of work, etc. several colleagues asked on our departmental whatsapp group and received the answer that no news means nothing changes. whilst i understand that our hod had not received anything from her boss, etc., it still leaves an unsettling feeling.’ (march 2020, th2, ot) conversely, reflections captured just how difficult it was to be in a position of leadership in the absence of protocols and in teams that required leadership on a broader scope of issues than was usually the case. one of the manager participants experienced the situation as follows: ‘i feel that compassion fatigue is setting in and want to scream i don’t know more than ever before. some staff seems to be so immobilised by fear and is unable to take the smallest of decisions.’ (march 2020, rm4, ot) communication within and between professional teams was shown to contribute positively or negatively to services and the well-being of clinicians. the importance of a supportive team was also observed: ‘most of my staff have recovered and are back from quarantine. glad to see our work family reasonably whole again. the positives i have seen is staff coming together to support each other emotionally. sending words of encouragement on groups and simple thank you’s instead of just being bombarded by bad news.’ (july 2020, rm2, pt) the personal robustness of individual clinicians also came to light. rehabilitation clinicians observed their need of wanting to help, but not knowing what to do, which increased their anxiety and resulted in feeling overwhelmed and inertia. they felt guilty because their workloads were affected and concerned about their patients not having access to rehabilitation. there were also reflections that showed rehabilitation clinicians creativeness, willingness to move beyond their scope of practice and rising to the demand of the occasion before them. reflections from a clinician who initially reported anxiety and confusion when working beyond her scope of practice in the swabbing tests illustrates this: ‘being a part of our “swabbing tent initiative” was a powerful experience for me. it made me feel like i was contributing to our hospital’s response to the pandemic and being useful beyond the realms of my professional scope. i am so glad i was a part of the initiative and i am proud of all that we have achieved. allieds are the sticky, delicious peanut butter and jam holding the public health sector sandwich together, and we proved that yet again with our willingness to go above and beyond.’ (may 2020, ba1, sta) the success of supportive initiatives such as employee assistance programmes (eaps) and employee health and wellness programmes were also reported. gratitude was expressed towards management members who had circulated rehabilitation-specific pandemic information, negotiated for and secured ppe relevant to rehabilitation and organised training sessions for adapted programmes. reflections captured towards the end of the research, which was after the first covid-19 wave and before the second in south africa, showed pandemic fatigue: ‘i am over corona. i am over social distancing. i am over wearing masks. i am over feeling like there are so many people out there who need help but are unable to get it.’ ‘i feel [countries that experienced the pandemic before south africa and international organisations] lied to us. i feel millions of rands have been wasted for nothing. i feel this virus is no worse that tb, which kills more people in south africa every single year than this virus ever will. i feel the majority of south africa is really struggling to support their families and those that were already vulnerable have been pushed even deeper into their pit of despair. the knock-on effect, financially, will take years to recover if it ever does. i don’t know if it was really worth it.’ (september 2020, th2, ot) the lifting of restrictions allowed for continuation of some familiar rehabilitation initiatives; this went a long way to reduce pandemic fatigue: ‘heritage day, physio week, ot week and deaf awareness campaign all provided some much-needed distraction, respite from the covid-19 onslaught and a glimpse into some form of normalcy. we have had to however keep reminding each other not to become complacent. having attended some external meeting this month was probably one of the most healing interventions for my heart and soul. i didn’t realise how much i had really missed those interactions. i thrive on interacting with others especially those i regard as mentors and finally seeing these important people in my life was a blessing.’ (september 2020, rm2, pt) field notes taken during the conclusion of the research revealed that several participants experienced the systematic capturing of their professional reflections to be a positive experience. it helped them cope with anxiety and uncertainty. one participant referred to the experience as cathartic. another participant captured her views in an email as follows: ‘just finalising my last entry so i can submit. as much as i started this for the cpd points, reflecting on my experiences over the past few months have put things into some perspective. i was able to share some of these thoughts with colleagues and we could guide and pull each other up when we most needed it. knowing that i was not alone in this and others were feeling the same makes me feel less isolated.’ (field notes, amh1, ot) discussion disorder and confusion, disruption of rehabilitation and the strain under which rehabilitation clinicians were, showed how the role of rehabilitation and its service to public healthcare users was challenged. the need to strengthen and improve rehabilitation services offered at public healthcare facilities was demonstrated. different leadership experiences were reflected on showing how the presence of effective leadership with clear communication, dependable multidisciplinary teams and robust personal resources were strategies that supported rehabilitation clinicians whilst working during covid-19. similarly, the positive impact of well-informed clinicians implementing covid-19 related policies in their practices illustrated the power of good leadership to yield positive outcomes, providing containment that made clinicians feel safe and cared for, reasserting their commitment to their work. the covid-19 pandemic has offered an opportunity to learn from the experiences of rehabilitation clinicians, thus producing practice-based evidence that could inform policies or strategies to raise the level of preparedness for future disruptive events. in addition, the consequences of discontinued, restricted or disrupted rehabilitation led to a reappraisal of rehabilitation as an essential service. the findings further highlighted professional competencies, often considered ‘soft skills’, to be paramount in managing heightened demand for containment and mental health concerns of health professionals and their patients alike. strengths and limitation qualitative research does not necessarily require large samples to yield good quality findings. however, having only one participant for most of the professions completing data collection is considered a limitation. conversely, none of the themes that emerged pertained to profession-specific issues, thus reducing the impact of this limitation. the prospective nature and eliciting practice-based reflections was a strength of the research, especially because reflections extended over 6 months. as such the way in which participants were affected by the progression of the pandemic was shown. implications and recommendations the covid-19 pandemic has created an opportunity to reconceptualise, strengthen and improve rehabilitation services in public healthcare. effective leadership, clear communication, strong multidisciplinary teams and clinicians with robust personal resources, strengthened rehabilitation services offered in public healthcare. conclusion in africa, the need to address epidemics, plagues, pandemics and other large-scale threats to health is not an uncommon event. the focus of intervention and planning for such event is often on the role of medical doctors, nurses and community health workers. evidence that could inform the role of rehabilitation healthcare workers would be of value to public healthcare users, educators, policymakers and professional bodies. interviewing 101 leading thinkers from a variety of fields, on what the world might look like after the corona virus, najam concludes that the covid-19 pandemic will leave nothing unchanged and that it brought about an opportunity for fundamental restructuring (najam 2021). for rehabilitation, the pandemic has shown the negative consequences of diverted focus of policymakers and resources, leaving the service users of rehabilitation side-lined. without strong rehabilitation-focussed leadership and clear policies, rehabilitation services will once again be left floundering with practitioners taking strain. an important lesson for rehabilitation practitioners was the need to move beyond an institution-based silo-practice mindset. instead, rehabilitation professions should work together to develop collective strategies to ensure the availability of their services. advocacy for continuation of rehabilitation as an essential service should be a priority of professional associations in preparation for future disasters requiring quick action and clear protocols. further in-depth exploration involving larger groups of rehabilitation professions from a greater variety of clinical settings, could be valuable to inform restructuring and suggestions emanating from this research. acknowledgements the authors would like to acknowledge riana best who initiated the project. they greatly appreciate her insight of the value that the capturing of such unique experiences would have for rehabilitation professions and participating rehabilitation clinicians’ magnanimousness in being prepared to share their experiences, during challenging times. the operationalisation of the project stemmed from a collaboration between stellenbosch university and gauteng health. the authors also extend their appreciation to elma burger and simon rabothata, from gauteng healthcare’s rehabilitation management, for their support and acquiescence. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions h.m.v.b. planned and operationalised the project with support and guidance from l.v.n. both authors analysed and 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the art of mindful practice in occupational therapy’, canadian journal of occupational therapy 76(3), 180–188. https://doi.org/10.1177/000841740907600307 united nations, 2015, transforming our world: the 2030 agenda for sustainable development, viewed 11 march 2020, from http://www.un.org/ga/search/view_doc.asp?symbol=a/res/70/1&lang=e van biljon, h.m., 2016, transforming the vocational rehabilitation services of occupational therapists in gauteng public healthcare through action learning action research, university of the witwatersrand, viewed n.d., from http://hdl.handle.net/10539/22587. van biljon, h., casteleijn, d. & du toit, s.h.j., 2015, ‘developing a vocational rehabilitation report writing protocol – a collaborative action research process’, south african journal of occupational therapy 45(2), 15–21. https://doi.org/10.17159/2310-3833/2015/v45n2a4 world health organization (who), 2020a, pulse survey on continuity of essential health services during the covid-19 pandemic: interim report august 2020, interim re(august), world health organization, geneva. world health organization (who), 2020b, rehabilitation, newsroom, viewed n.d., from https://www.who.int/news-room/fact-sheets/detail/rehabilitation. appendix 1 reflection guide article information authors: anthony mugeere1 peter r. atekyereza1 edward k. kirumira1 staffan hojer2 affiliations: 1department of sociology and anthropology, makerere university, uganda 2department of social work, university of gothenburg, sweden correspondence to: anthony mugeere email: amugeere@chuss.mak.ac.ug postal address: po box 7062, kampala, uganda dates: received: 16 may 2013 accepted: 27 nov. 2014 published: 26 may 2015 how to cite this article: mugeere, a.b., atekyereza, p., kirumira, e.k. & hojer, s., 2015, ‘deaf identities in a multicultural setting: the ugandan context’, african journal of disability 4(1), art. #69, 9 pages. http://dx.doi.org/10.4102/ajod.v4i1.69 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. deaf identities in a multicultural setting: the ugandan context in this original research... open access • abstract • introduction • literature review • multiculturalism in uganda    • aim and research questions    • theoretical positioning    • methodology: design and setting    • sampling procedure    • data collection    • data analysis    • ethical and validity considerations • results and discussion    • sub-theme 1: perceptions and construction of deaf identities in uganda    • sub-theme 2: experiences of deafness in a multicultural environment    • implications • conclusion • acknowledgements    • competing interests    • author’s contributions • references • footnotes abstract top ↑ often located far apart from each other, deaf and hearing impaired persons face a multiplicity of challenges that evolve around isolation, neglect and the deprivation of essential social services that affect their welfare and survival. although it is evident that the number of persons born with or acquire hearing impairments in later stages of their lives is increasing in many developing countries, there is limited research on this population. the main objective of this article is to explore the identities and experiences of living as a person who is deaf in uganda. using data from semi-structured interviews with 42 deaf persons (aged 19–41) and three focus group discussions, the study findings show that beneath the more pragmatic identities documented in the united states and european discourses there is a matrix of ambiguous, often competing and manifold forms in uganda that are not necessarily based on the deaf and deaf constructions. the results further show that the country's cultural, religious and ethnic diversity is more of a restraint than an enabler to the aspirations of the deaf community. the study concludes that researchers and policy makers need to be cognisant of the unique issues underlying deaf epistemologies whilst implementing policy and programme initiatives that directly affect them. the upper case ‘d’ in the term deaf is a convention that has been used since the early 1970s to connote a ‘socially constructed visual culture’ or a linguistic, social and cultural minority group who use sign language as primary means of communication and identify with the deaf community, whereas the lower case ‘d’ in deaf refers to ‘the audio logical condition of hearing impairment’. however, in this article the lower case has been used consistently. introduction top ↑ there are different discourses on the concept of deaf identities1 ranging from whether or not it should be plural, to the interrogation of competing theoretical perspectives that account for their definitions and diversities (bat-chava 2000; maxwell-mccaw, leigh & marcus 2000; waqar, atkin & jones 2002; leigh 2009; de clerck 2010; mcllroy & storbeck 2011). whereas deaf persons are widely considered a socially vulnerable group, some scholars have argued that contemporary deaf identities are crafted by balancing vulnerability and empowering forces (breivik 2005b). according to breivik, the question of vulnerability of being can be transformed into strength, especially when the deaf community arrives at a collective sense of belonging through sign language, deaf culture, socialisation and shared experiences (hannah 2011; hole 2007; marieme 2013). literature review top ↑ discourses on deaf identities became prominent in the 1960s following the recognition of the american sign language and the growth of an international deaf community in the united states (monaghan et  al. 2003:28). the roles of deaf politics, ethnicity, gender and age in deaf identities have been examined in some studies. waqar et  al. (2002) discount notions of singular or primary identities (such as ‘deaf’ people or ‘muslims’) in a study of asian (mainly pakistani muslim) deaf young people and their parents in the united kingdom. the authors describe asian deaf young people's identifications as ‘multiple, complex and contingent’. in other words, they view claims to identity by their study population as a fusion of a host of socio-cultural factors that go beyond just having an hearing impairment and/or the use of sign language. specifically, they attribute deaf identity development to a backdrop of deaf politics, ethnicity, religion, gender and age amongst other factors. kusters (2009) examines the way deaf persons in ‘shared signing communities’2 (in mexico, bali, israel and ghana) participate in village life which is largely in the same ways as hearing people do – as members of social and linguistic groups. the author argues for more sustained fieldwork in studying western deaf communities and shared signing communities to understand the ‘deaf-specific experiences and relationships in dynamic complex realities’ (kusters 2009:7). cline and mahon (2010) also contend that deaf persons who share a common language such as the british sign language (bsl) find it easier to identify with other deaf people rather than with members of an ethnic or cultural community of similar origin to their own; a position strongly supported by skelton and valentine (2003) in their analysis of the role of bsl in young people's redefinition of their deaf identities. in sub-saharan africa, research on deaf identities is quite limited. lee (2012) examines the relationship between deaf people and mainstream society in tanzania, concluding that there is no unified discourse on deaf identities in eastern africa, with most work being conducted in south africa (see, for example, aarons & akach 2002:134 ; heap 2003). nassozi and donald (2003) explore several issues on deafness in the sub-continent but little emphasis is put on deaf identities. schmaling (2000) assesses the significance of the sarkin bebaye [chief of the deaf], whose office is regarded as that of a representative of the deaf, paralleling the system of chiefs in the hausa society of nigeria. the issue of deaf identities was, however, none of his study themes. similarly, other studies on the deaf in africa over the last decade (bisol 2008; enwereji & enwereji 2008; groce et al. 2007) generally focus on other research themes such as hiv prevention and knowledge amongst the deaf, and health–related attitudes and behaviour, and differences in knowledge about hiv and aids. it is, therefore, evident that there is a paucity of empirical evidence on deaf identities in africa. whilst the numerous studies carried out elsewhere offer useful insights into this subject, they mainly explore issues of young deaf persons on a smaller scale and in less heterogeneous communities. besides, they use mixed methods research approaches with no in-depth exploration of deaf persons’ identities and experiences. this partly presents a compelling case to conduct the ugandan study. multiculturalism in uganda top ↑ uganda, one of the smallest countries in eastern africa, is also one of those with a complex cultural, ethnic and linguistic system in sub-saharan africa (namyalo 2010). its rich and diverse heritage and culture ‒ handed down in stories, folklore and songs from one generation to another ‒ are key pillars of the country's tourism industry and national identity. according to gordon (2005), uganda has 43 languages spoken by its estimated 34 million people (uganda bureau of statistics 2012) broadly categorised into the bantu, sudanic, eastern nilotic and western nilotic ethnic groups. such multilingualism and ethnic heterogeneity has facilitated the adoption and use of foreign languages such as swahili and english, the latter being considered the official language for education and communication purposes (namyalo 2010). the country's multicultural system is based on a closely-knit network of tribal and social groupings whose identities are shaped by varying norms, values, symbols and beliefs. over the centuries, such a system has had a major impact on the construction of the identities of individuals and communities, including those of deaf persons. in uganda, deaf persons are officially categorised into the congenitally deaf, prelingually deaf, post lingually deaf and the hard of hearing (douglas 2007; lane 1975; kathee 1998; uganda national association of the deaf [unad] 2010). the congenitally deaf are those born deaf and never heard of any spoken word at all. they largely rely on the ‘ugandan sign language’3 or gestures for communication and do not learn the spoken language of the surroundings—with a few exceptional cases. the prelingually deaf were born hearing but lost their sense under the age of five. some of them cannot, therefore, ably speak the spoken language of the hearing community. the postlingually deaf were born hearing and lost their sense after learning the spoken language of the surroundings after the age of five. some can, however, if provided with the necessary support (technological or otherwise), speak the language of the hearing community. on the other hand, the hearing impaired are those who can hear the spoken language to a certain extent but may take time to receive the message. although there are isolated cases of some ugandan deaf persons who use technological hearing aids amongst the above categories, none of such individuals was involved in this study. aim and research questions the main aim of this article is to explore the deaf identities and experiences of living with a hearing impairment in uganda. the study, of which the article is an output, 4 was only designed to hear the ‘voices’ of the deaf individuals and no quantitative evidence of any aggregated data was provided. some of the research questions that guided the study were: how do deaf persons understand their identities?; who do they interact with most?; what is the experience of living as a deaf person in a multicultural environment dominated by hearing people? theoretical positioning the theoretical paradigm within which this article is located is the social identity theory (tajfel 1981) which posits that members of minority groups achieve positive social identity by attempting to gain access to the mainstream through individual mobility or working with other group members to bring about social change (bat-chava 2000). this perspective is adopted for its relevant assumptions which provide for the utilisation of a combination of both strategies to attain certain forms of identities. the idea that people are willing to see their group as better in some way than others—hence its ability to explain a wide range of social phenomena—also made the proposition of using the theoretical framework for this study attractive. methodology: design and setting an exploratory-interpretive research design was used to uncover new ideas (stebbins 2001) and incorporate various interpretive techniques that try to find the meaning, not the frequency, of occurring phenomena in the societal world (cooper & schindler 2003; neuman 2003). it was based on unstructured interviews (in-depth conversations) with 42 deaf individuals (aged 19 to 41) and three focus group discussions (fgds) – including one for female respondents – sampled from 10 districts of uganda. sampling procedure the study areas and respondents were purposively sampled (sarantakos 1997), a procedure that enabled the researcher to use his judgement to purposively choose only those areas and respondents who, in his opinion, were thought to be relevant to the research topic. the technique was also chosen to ensure maximum variation of study variables such as rural and urban settings, profession, age, marital status, level of education, additional forms of disabilities, values and beliefs, cause and age at which deafness occurred and family backgrounds until data saturation could be achieved. purposive sampling was also considered appropriate because it was possible to generate the sample of deaf respondents (by text messages and mobilisation) through contacts at the national and district associations of deaf persons. data collection an interview guide in the form of a list of questions on the respondents’ lived experiences of being deaf was used. the sub-themes of the guide were perceptions and constructions of deaf identities, and experiences of deafness in a multicultural setting. all the interviews were conducted in the uganda sign language (usl) under the supervision of the lead author of this article with the help of experienced research assistants and usl certified interpreters between september 2012 and july 2013. before starting any interview, the researchers fully explained the purpose of the study in the local language (with simultaneous usl translation) to the respondents and assured them of confidentiality, anonymity, voluntary participation and the right to withdraw from the proceedings at any stage of the interview. the lead author, who is not deaf but has since learnt the basics of the usl, also ensured that respondents who accepted to participate in the study signed consent forms to confirm that they willingly volunteered to take part in it and fully understood its objectives and scope. in cases where the respondents were illiterate and could not sign the consent forms, the lead author had to strike a compromise between the ethical codes and situational common sense (mattila 2011) by explaining and empowering them to give consent by nominating one of their significant persons5 to sign on their behalf. during each of the one to two-hour interview sessions, one sign language interpreter used the ‘voice over’ system to interpret the interviewees’ usl signings whilst the second monitored the facial expressions and other reactions that could provide further insight into the subject of inquiry. given the sensitive nature of the subject under investigation, it was important to monitor the respondents’ emotional reactions to the interview questions as they were used to provide further clues on what to probe for. secondly, the facial expressions and other forms of reaction by the respondents were also used as an indicator of whether or not they had clearly understood the question. thirdly, they were used to ascertain whether or not the respondents were freely giving their responses as many of them had never been involved in such a type of study interviews. the interviews were audio-recorded (with a few video recorded where usl was used), with the participants’ permission and written consent (signed in english). data analysis audio recordings of the sign language interpreters and video recordings of both personal interviews and focus group discussions formed the data for this study (wickenden et  al. 2012). the video recordings were converted to dvds using adobe premiere pro cs44.0.1 video software (mprah 2013). the transcription of the data from the dvds was carried out in two steps, namely ‘partial’ transcription and full transcription. the first step (‘partial’ transcription) involved viewing the dvds from all the focus groups to identify and transcribe into text format concerns that were raised by participants (mprah 2013). these were, together with the ‘voiced over’ recordings transcribed to text format by certified usl interpreters who were used to develop the codes using nvivo 10 qualitative analysis software (gibbs 2012). the lead author organised the codes into themes, based on the specific objectives of the study. it was on this basis that the sub-themes (as presented in the results and discussion section of this article) and the analysis and interpretation of the study findings was carried out phrase by phrase (miller 2005). ethical and validity considerations fully aware of the limitations of qualitative research in which the researcher is often in direct contact with people (de laine 2001), the lead author tried to avoid the ‘goodwill’ trap in which the interviewer has the role of a professional as well as sympathetic fellow being (nasman & eriksson 1994). dissemination was carried out by the lead researcher in selected communities to provide feedback to the deaf individuals through workshops using videos with simultaneous usl interpretation. further, to manage one of the most widespread criticism of qualitative studies, namely; the view that their results cannot be generalised to a wider population and the sample size and extent to which data saturation is reached is not quite convincing; rigour was attained by double-checking and, in some cases, focusing on how the analysis of the data evolves into a persuasive narrative‒a procedure described by patton (1980) and as cited by creswell and miller (2000) as one where qualitative analysts return to their data ‘over and over again to see if the constructs, categories, explanations and interpretations make sense’. results and discussion top ↑ two major themes, namely, perceptions and construction of deaf identities in uganda, and experiences of deafness in a multicultural environment, and eight sub-themes (table 1) were identified to inform this article. table 1: themes, sub-themes and key issues of the study. it was on the basis of these themes that the findings of this article are presented and discussed. sub-theme 1: perceptions and construction of deaf identities in uganda bat-chava (2000) and maxwell-mccaw et al. (2001) identified the salient indicators of deaf identities as personal and cultural identification, knowledge of deaf culture and preferences and involvement. it is on the basis of this criteria this study was conceptualised. the overriding finding from the data is that the perceptions and construction of deaf identities by deaf persons in uganda depend on the surroundings within which they are born, grow up and live. generally, the study shows that most deaf persons have a positive attitude towards their condition. with a majority of them able to use usl, there is an overwhelming feeling that deafness is just a human experience. ‘i was born deaf but have never pitied myself at all. i have always believed that deafness is not a disability. it is a condition like any other’, remarked one respondent: another respondent: ‘i don’t know why i can’t talk but i am not angry with myself. i am married to a hearing wife, have three beautiful hearing daughters who are in good schools. i also have a car even if i hire someone to drive me around. another added: ‘there are times when i enjoy and dance to music played at parties. i look at the movements of those who hear to get the beats. my only problem is that i don’t hear the speeches made because there is no usl translation’. a participant in a fgd commented: ‘i really hate those who discriminate against us because we are deaf. we are human beings like any other. let the government build more technical training colleges for the deaf’. similarly, there was a related response: ‘my wife is not deaf but she is learning the usl. normally, she understands my gestures and reads my lips quite well. but when she fails to get what i mean, i write it on a piece of paper. so i am happily married’. the above responses typify what most researchers in deaf studies refer to as a culturally deaf identity. to such deaf persons, the extent of hearing loss is a non-issue in their lives. ‘i use the usl but it is still a language’, remarked one female focus group discussion participant. ‘i know there are many people who don’t understand it but it is the same with english. how many people can speak it?’, another asked rhetorically. they resist all forms of discrimination against them based on their condition and have been at the forefront of advocacy programmes to empower their community in various ways. one such programme has been the campaign for all local television stations to use captions and simultaneous usl translation during news bulletins and other broadcasts ‒ a move that has since been enforced by the uganda communications commission (ucc). ‘these captions have really helped us feel that we are part of the general society. in fact, even some persons with no hearing impairments rely on these captions, so we are all together in this’, commented a deaf respondent. however, the study's findings also show that there are deaf persons who are not at ease with their condition. some of them expressed anger at why they should use sign language whilst the majority of their community members are hearing. ‘there are times when i think that god hates me’, one respondent said. another commented: ‘i asked my parents several times why i can’t talk yet my brothers do but they gave me no answer … it is annoying’. other respondents with similar identity traits said they preferred to be lonely most of the time to avoid being labelled ‘sick’. an fgd participant said that she sometimes chooses to pretend to be hearing to avoid being labelled deaf. ‘when i sit in a taxi, i wear headphones so that passengers who want to exit just tap my back instead of talking to me. they would assume that i am listening to music on my phone yet i am deaf’, she explained. such respondents show a marked difference in attitude to deafness and would therefore wish that they could be ‘fixed’ medically, a view supported by proponents of the medical model of disability. ‘i wish there is a hospital in this country that could offer surgery to permanently heal my hearing impairment’, asserted a 36-year-old deaf male respondent. ‘i would sell whatever property is in my possession so that i can become a normal person’. another 29-year-old hard of hearing male respondent, added: ‘i understand that the europeans have machines that can heal deafness. but here in uganda, there is none and that is disappointing for me … being born in such a developing country’. under the bat-chava (2000) categorisation of deaf identities, such respondents would be regarded as culturally hearing. this study also shows that there are deaf persons whose deaf identities can be categorised as ‘bicultural’. the concept of biculturalism encompasses the notion that an individual is able to gain competence within two cultures without having to choose one culture over the other (la fromboise et  al. 1993). these individuals not only spend much of their lives grappling with the contradictions of navigating between the different cultural groups but also interacting with both the hearing and fellow deaf persons. most of their decisions are made basing on the desire to bridge the ‘gap’ between both hearing and deaf identities as observed by one respondent: ‘i had a hearing girlfriend but felt at some stage that we don’t communicate very well. she failed to learn usl and my gestures were becoming a problem especially when there was no light. even some of her relatives were undermining me because of my disability so i now have a deaf woman and we are planning to marry soon’. although this study revealed evidence of heightened community sensitisation and advocacy for the deaf rights in uganda, findings further show that the perceptions and construction of deaf identities is also influenced by the distance between them. a combination of physical barriers, poor infrastructure and high levels of poverty in most parts of the country makes it difficult for deaf persons to come into contact with one another. despite the increasing use of text messaging and mobilisation by community workers amongst the community in the countryside, many are still not aware of other persons in their community who are deaf. ‘i am the only deaf person in this village so maybe that is my identity’, said one respondent. for such respondents the social and personal preferences they hold are, therefore, dictated by the fact that they must identify with the hearing community. they are forced to overcome all the barriers of their condition by making choices of friends or spouses from the only pool of hearing persons available in their communities. the development of the deaf identity features as identified by bat-chava (2000) and maxwell-mccaw et al. (2001) would be dictated by the surrounding circumstances and not by choice or preference. their knowledge of deaf culture and involvement in social clubs and other activities in the area would for instance be more a result of lack of knowledge of other persons than choice or preference. it would therefore be unrealistic for anyone to categorise such persons under any of the above deaf identities. this is also fully explained by the social identity theory that informs this study. as minority individuals, these ‘lonely’ persons seek social identity by working with (any) other group members to bring about social change in their lives. regardless of whether or not he or she would wish to marry, he or she must find a marriage partner within the community, dominated by hearing persons. the idea that some persons are willing to see their group as better in some way than others, as argued by bat-chava (2000), therefore, becomes irrelevant. these findings concur with those of a study in tanzanian where it was found that there is no unified discourse on deaf identity or a global deaf identity either (lee 2012). with the exception of a few elites who have travelled internally, the deaf tanzanians were found to have little awareness of deaf people outside their own communities. another key issue in the perception and construction of deaf identities in uganda that emerged from the study was the role of civil society organisations. although it is widely acknowledged that non-governmental organisations (ngos) have for the past two decades been at the forefront of mobilising and empowering deaf individuals countrywide, this study revealed that they are also shaping a form of deaf identity amongst their members. despite their expressed sense of isolation from other deaf people, many respondents said that their membership of some ngos that deal with issues related to the deaf community has in many ways fostered a special form of ‘bonding’ that has enabled them to attain personal and cultural identification, widen their knowledge of deaf culture and preferences and to become involved in many activities that they would never have dreamt of. one of the hallmarks of this form of bonding is the regular ngo meetings and other activities that include sensitisation seminars during which they also sign for allowances to attend, as explained by one fgd participant: ‘i used to feel so lonely out there. i used to think that i am useless until our ngo invited me for a seminar. they give us allowances to attend seminars which enable me to afford basic needs like food, medical care and mobile phones to ease our communication. we are also able to socialise, know other deaf persons from different parts of the county and avoid boredom’. in many ways, this ‘ngo-centric’ form of deaf identity has helped galvanise and improve the living conditions of a section of the ugandan deaf community. they regularly meet to share experiences, learn vocational skills and promote the usl. some of them indicated that they had formed small savings and credit organisations to boost their economic status and sports clubs for recreation purposes. the ugandan ngos have therefore unconsciously given some persons the opportunity to understand who they are and to define their characteristics, like in tanzania where the deaf in urban areas are unified by the characteristic of being ‘deaf’ and held together by a range of social networks produced and reproduced through face-to-face gatherings during meetings of deaf organisations and clubs, participation in sports formats (such as olympics and basketball championships) and beauty pageants (lee 2012). in a way, this is a form of deaf identity even if it is less ideologically oriented and more pragmatic than those documented in american and western discourses. furthermore, those who sign for the allowances indicated that they do so on account of being deaf whose plight is being responded to by the hearing world (through donations and other forms of support). this is against the backdrop of the widely held view amongst researchers that the practice of signing for seminar allowances is not unique to deaf persons. lee (2012) also notes that tanzanian ngos dealing with the deaf population – whether national or regional – only serve as ‘sites of transmissions of internal discourses of deaf culture’ to the most elite of such persons. branson and miller (2002) also discuss the same scenario in ‘damned for their difference’ thesis on identity politics. sub-theme 2: experiences of deafness in a multicultural environment the study results show that the experiences of deafness in uganda are greatly shaped by the country's religious, cultural, gender, family and linguistic diversity. in some parts of uganda, female muslim deaf persons are discouraged from using particular usl finger spellings and gestures by their significant persons and religious leaders whilst communicating with men, except to their husbands or other men to whom they are closely related. in most cases, some islamic clerics preach that a muslim woman who uses certain forms of finger spellings and gestures to communicate to a man risks being misunderstood by the man or even society (which is dominated by persons with no hearing impairment) as an indicator that the woman is initiating an intimate relationship, which is in itself a taboo. other muslim faithful believe that there should be no form of contact or communication whatsoever between a muslim woman and a man to whom she is not closely related or married too. for such believers, a ‘true’ muslim woman is not only judged by the way she ‘veils’ her body and adheres to the pillars of her faith but also the distance she keeps from men (whom she is not married or related to), including refraining from using ‘obscene’ usl finger spelling and gestures to them. although this is aimed to promote abstinence and faithfulness amongst muslim women, it restricts the way they talk to and interact with men, for official and social purposes. the results further show that there are some cultures and customs in central uganda that consider a few of the usl finger spellings and gestures ‘obscene’ and unsuitable for use in public. for such communities, the use of certain gestures and other forms of signing point to insinuations of sexist expressions whose use in public is forbidden. therefore, anyone (including deaf persons) who uses such expressions is considered a ‘spoilt’ person who publicly expresses love feelings, a form of behaviour akin to that of prostitutes seeking to attract clients. consequently, many deaf persons – especially women – fear to use usl finger spellings and gestures which are regarded as ‘obscene’ by society. in effect, this limits not only their freedom of expression but also the use of usl. whilst this study did not explore social support systems for the deaf persons per se, it emerged that families, friends and neighbours play an important role in the lives of this group. several deaf persons indicated that they were born and raised by their parents on equal footing with their hearing siblings. they received good child care, were taught usl and had attended schools which were accessible to them. some of them currently hold well paying jobs in the private and public sectors with varying levels of influence in national and international arenas. however, there are those for whom decades of insurgency, disease and ignorance brought untold suffering over the years. these include the orphans of war and the hiv and aids pandemic, some of whom were forced to become household heads before their teenage years to look after their hearing siblings. with no adequate formal support structures in the country, their experiences are daunting, as observed by an fgd participant: ‘for me, life has been hell on earth. my parents died of aids and i became the parent of my brothers and sisters when i was just 13. the liberation war of the 1980s also made me a war veteran. we have a small piece of land to cultivate, so there is always little food at home. these terrible events are even worse than my deaf condition’. from the above quote, it is evident that in the face of widespread poverty, this socially vulnerable group is also one of those hit hardest by disease, ignorance, malnutrition and the general lack of the means of production. it also points to the overall gaps in the identification and intervention into the socio-economic problems affecting them. respondents also described additional forms of disabilities (such as physical disability and blindness), polygamy and wider family networks as compounding factors to their plight, such as this 26-year-old deaf male's narrative: ‘i am deaf but also walk on one leg (with the aid of a stick) because i was crippled by polio in my early years. i also know of another deaf person in the neighbouring district who is blind. it is double tragedy for many of us’. another 30-year-old female respondent explained: ‘some of us are married to men who have other wives without any hearing impairment. my husband is one of them and my co-wives insult me that i am just a deaf woman who came to produce deaf children in this family … even some of his relatives feel bad that he chose to marry me, a deaf woman. they do not talk to me even when we meet for family functions such as weddings and funerals’. interwoven into this matrix of variables are the gender perceptions and constructions which largely affect the female deaf persons. whereas there were two cases of female respondents who were married to deaf spouses, the study results show that very few hearing men would be willing to marry a deaf woman. this often creates relationship complexities at household level as the majority of eligible deaf women remain either unmarried or marry hearing men that they fail to bond with. ‘the hearing men think we cannot fulfil our marital obligations because of our hearing impairment’, observed one 27-year-old female deaf respondent. ‘they also probably fear that we will give birth to deaf children and this further discourages them from marrying us’. these findings resonate with those of the tanzanian study which found that deaf women have limited recourse in traditional community structures, live away from their biological families and rely on members of their deaf networks for support as the long-standing traditional networks – such as parents and community members – are often inaccessible to them (lee 2012). nassozi and donald (2003) also explore the ‘triple discrimination’ faced by deaf women in other sub-saharan african countries because of deafness, gender and poverty. these being deaf and being other things (waqar et  al. 2002) findings not only further complicate the deaf identities but also underlie the living conditions of the deaf community in uganda. in some districts, religion is not just faith, but a symbol of identity for believers. membership to a particular religious group means that one has to acquire some identity features that characterise its followers, such as language and accent. for the deaf persons this is, however, impossible and therefore a limitation on the way they espouse their beliefs. the proliferation of pentecostal churches and other groups in the country over the last 20 years has further complicated the situation. whereas some deaf persons, for instance, attend special church services organised for them in the urban areas, those in the rural areas find it difficult to identify with the churches and mosques where their special needs are not catered for. the restoration of the buganda kingdom and its cultural ruler, the kabaka, and other kingdoms in 1993 renewed the significance of cultural values, beliefs and customs amongst those endeared to them. although many deaf persons would be more willing to identify themselves with the main religious groups, tribes or cultures in the country, they undergo varying forms of cultural socialisation and ‘speak’ multiple dialects. besides, some cultures still regard deafness as a curse to the family, clan or local community. others are isolated, stigmatised and taunted using some derogatory vernacular words such as kasirus, zontos or bubus [idiots or imbeciles]. in some areas, the illiterate deaf persons rely on ‘home-made’ gestures and signs for communication which is a common feature of co-segregation and ‘deaf-specific experiences’ in village sign languages (zeshan 2005:560). even if a few of them are integrated in their local communities by offering them odd jobs such as working as foremen at filling stations and digging pit latrines in people's homes, their ambitions are greatly constrained by the lack of the ‘empowering aspects of being sign language users’ (breivik 2005a:18). these findings show that the four stage phase of deaf identification described by ohna (2004) partially applies to uganda. whilst it would be harsh to conclude that such deaf persons are ‘alienated’ or ‘taken for granted’, there are indicators that they are ‘deaf in their own way’ (breivik 2005a:10). for instance, deaf muslim men who cannot speak arabic (the recommended language for communication in islam) attach greater significance to wearing the kanzu [tunic] than their hearing counterparts in defining their religious identity. similarly, those who cannot ‘speak’ usl tend to complement their use of gestures by being obedient and the most result-oriented workforce in the informal sector where their services are valued. lastly, some deaf muslims also face challenges using the usl alphabet to finger spell words from their holy book, the qur’an, the alphabet of which is based on the arabic language. with the exception of the minority who attend islamic schools where they learn signing in arabic, the rest find it difficult or even impossible to follow the writings in the qur’an and other islamic literature. this also aligns with the theoretical orientation of this study in a sense that group affiliation has not only been internalised psychologically to describe the subjective self (tajfel 1981) but is also used to define the categories of knowledge and of ‘reality’ created and are the products of social and symbolic relationships and interactions, all within the given temporal and spatial boundaries of a cultural context (hacking 1999). in other words, whatever the deaf persons may individually espouse, is contingent on community values and perceptions which, in turn, affect the way they define themselves. in summary, the multicultural environment in uganda is more constraining than enabling to the lives of the deaf community, akin to findings in asia where a ‘hybridity’ of identity emerged as young deaf persons found it difficult to become full members of their religious and ethnic communities (waqar et  al. 2002). implications the findings in this article are expected to contribute to the theoretical discourse on deaf identities in developing countries. they also have practical implications on informing policy and programme design and implementation for the deaf community in most sub-saharan african countries. conclusion top ↑ this article examined the perceptions and construction of deaf identities and experiences of living as deaf in uganda. the study findings showed that in addition to the deaf identities that have for long dominated discourses on this subject, the ugandan setting provides for other factors that are not necessarily enshrined in the deafness constructions. this is clearly linked to the country's cultural, religious and ethnic diversity. that identities are situational and flexible is a truism (hall 1992; westwood & rottansi 1994). it is therefore prudent for researchers to embrace these diversities in order to understand the lifestyles and social behaviour of this socially vulnerable group. whereas some have posited that accessing an emic perspective without a shared formal language is definitely possible (lee 2012), it is easier said than done whilst dealing with this ‘silent’ population. acknowledgements top ↑ i am greatly indebted to the swedish international development agency (sida) and makerere university who funded my phd training, of which this article is an output. i am also grateful to my trio of supervisors whose timely review and critique of my proposal and draft article on on-site visits to the study districts was vital. competing interests the author declares that he is not in way involved in emancipation research by becoming an advocate of deaf persons. i am neither deaf nor disabled in any way and my only interest in undertaking this study was for academic purposes. author’s contributions a.m. (makerere university) conceptualised, designed and managed the entire research as part of his phd training. he also analysed and interpreted the data and wrote the draft article. this research was part of a phd thesis research study. p.r.a. (makerere university) e.k.k. (makerere university) and s.h. 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(eds.), 1994, racism, modernity and identity: on the western front, polity press, cambridge. wickenden, m., mulligan, d., fefoame, g.o. & katende, p., 2012, ‘stakeholder consultations on community-based rehabilitation guidelines in ghana and uganda’, african journal of disability 1(1). zeshan, u., 2005, ‘sign languages’, in m. dryer, d. gil & m. haspelmath (eds.), world atlas of language structures, pp. 558–567, oxford university press, oxford. footnotes top ↑ 1.identities, the plural form of identity is used in this article to refer to ‘a person's understanding of who they are and, of their fundamental defining characteristics as a human being’ (taylor 1994). 2.‘shared signing communities’ is used in this article to refer to the ‘pervasive use of signing by both the hearing and deaf’ (kisch 2008). 3.‘uganda sign language’ has been placed in quotation marks because uganda is one of the countries where sign language is still in its formative years. although it was formally recognised by government in the mid-1990s and there is a fully fledged deaf studies programme at kyambogo university, it does not have official status in schools. even when it is used in classrooms, the sign language skills of the teachers are often not adequate because of insufficient training (unad 2010). 4.this article is an output of a larger study aimed to investigate the perceptions of meaning and response to hiv and aids information by deaf persons in uganda. its first specific objective (theme) was to explore the deaf identities and experiences of deafness in a multicultural environment. 5.the concept ‘significant persons’ in this study is a modification of charles horton cooley's (1864–1929) definition of ‘significant others’ as used by ritzer and goodman (2004) to refer to people in our lives whose opinions matter to us and who are in a position to influence the way we think about things, especially about ourselves. this is contained in cooley's theory of socialisation in which he argues that individuals develop their self-images through their interactions with significant others. such persons include caregivers (such as family, friends and neighbours), sign language interpreters, religious and opinion leaders. abstract introduction historical background albinism and disability epidemiology genetics of oculocutaneous albinism and genetic counselling clinical considerations psychosocial and cultural issues recommendations for management conclusion acknowledgements references about the author(s) jennifer g.r. kromberg department of human genetics, faculty of health sciences, university of the witwatersrand and national health laboratory service, johannesburg, south africa robyn kerr department of human genetics, faculty of health sciences, university of the witwatersrand and national health laboratory service, johannesburg, south africa citation kromberg, j.g.r. & kerr, r., 2022, ‘oculocutaneous albinism in southern africa: historical background, genetic, clinical and psychosocial issues’, african journal of disability 11(0), a877. https://doi.org/10.4102/ajod.v11i0.877 opinion paper oculocutaneous albinism in southern africa: historical background, genetic, clinical and psychosocial issues jennifer g.r. kromberg, robyn kerr received: 10 apr. 2021; accepted: 29 may 2022; published: 14 oct. 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract albinism is an inherited condition associated with significant depigmentation of the skin, hair and eyes. it occurs in every population with varying frequency, and narratives of people with albinism have been recorded since 200 bc. in southern africa albinism is common, about 1 in 4000 people are affected, but it remains a poorly understood condition surrounded by myths and superstition. this article provides a historical background on oculocutaneous albinism (oca) in southern africa and presents relevant information from the literature regarding epidemiology, genetics and genetic counselling, health, psychosocial and cultural issues, and medical care. there are several recessively inherited types of oca and a mutation, responsible for about 80% of south african variants, has been identified in oca type 2. the physical characteristics associated with albinism, that is, sun-sensitive skin and low vision, can be managed. however, people with oca in africa also experience psychosocial issues, such as discrimination, because of the various superstitious beliefs and attitudes held in the community. management should include medical care for health problems, appropriate adjustment of the schooling context and genetic counseling. in addition, widespread public awareness programmes are required to increase the knowledge of the genetic causes of oca and of the nature of genetic counselling, to address the negative attitudes in the community, to reduce the marginalisation and stigmatization of people with albinism and to improve their quality of life. keywords: albinism and africa; clinical management; culture; disability; epidemiology; genetics; genetic counselling; health; oculocutaneous albinism; psychosocial issues. introduction oetting et al. (1996) defined albinism as a [g]roup of inherited abnormalities of melanin synthesis … characterised by a congenital reduction or absence of melanin pigment in association with specific developmental changes in the optic system resulting from the hypopigmentation. (p. 330) the two main categories of the disorder are oculocutaneous albinism (oca), which impacts the entire melanocyte system and causes hypopigmentation of the eyes, skin and hair, and ocular albinism (oa), which affects melanocytes of the eye with localised effects. the present article will focus on oca, and the terms ‘person with albinism’ and ‘people with albinism’ will be used because those with the condition prefer these terms. albinism is a classic autosomal recessive mendelian disorder caused by inherited gene mutations at a single gene locus, which results in a lack of pigmentation production by the cell (rooryck et al. 2009). oca occurs in every ethnic group at differing rates and is the type of albinism most often identified in african populations. the prevalence of oca is higher in africa than elsewhere, apart from rare, small and isolated populations found in arizona (usa) and panama (witkop et al. 1972). the aetiology of albinism is often misunderstood in africa and is associated with many myths and superstitions. these common beliefs interfere with the normal development and social interactions of those affected and lead to stigmatisation and discrimination in the community (kromberg 2018a); these beliefs also result in violations of the human rights of people with albinism (reimer-kirkham et al. 2020). for these and other reasons (mainly the associated physical disorders, such as low vision), the international community and the world health organisation (who) have declared albinism a disability (clarke & beale 2018). at present, the condition is receiving attention in many health departments and disability services across africa (ero 2020). therefore, the objective of this paper is to discuss oculocutaneous albinism in the black african population, with specific reference to published reports on the historical background, albinism as a disability, epidemiology, genetics and genetic counselling, health, psychosocial and cultural issues, and management of the condition. following the human rights violations against individuals with albinism in africa (discussed at https://www.underthesamesun.com/, accessed 22 february 2022), such a report is required to provide health care professionals with a comprehensive view of oca and enable them to advocate on behalf of affected individuals in their institutions and communities. historical background reports on people with albinism have appeared in the literature for many centuries, and to put the condition in context, selected publications will be briefly reviewed. the earliest description appears in the ancient pseudoepigrapha (written around 200 bc and discussed in sorsby 1958). this report states that noah, at birth, had skin white as snow, white hair and eyes that shone like the rays of the sun. as sorsby (professor of ophthalmology at oxford university) explained, these features were very unusual in the arab community into which noah was born. also, noah was the son of first cousins and could have inherited a recessive gene mutation from both parents, resulting in his albinism. another very early report, from the first century ad, was written by pliny the elder, a roman author and natural philosopher (plinius secundus the elder 1942 translation). he stated that he had read a document describing men in albania who had sea green eyes, white hair from childhood and difficulty seeing in the daylight. pliny also described a group of leucoethiopes (white ethiopians) living in north africa. much later, vossius, writing in 1660, stated that these people were also called albini (pearson, nettleship & usher 1913). in the 1850s, david livingstone (1857), the scottish missionary and explorer, described in detail a case of albinism he encountered in botswana. he stated that the mother refused to kill her son who had albinism (as her community expected her to do), so she was excommunicated from her village. she and her son survived in isolation for many years but eventually she decided she had to kill him so that she could return to her village life. in the early 20th century, pearson and his colleagues collected information on albinism from many different countries and published their findings, with many photographs, in several volumes of their ‘a monograph on albinism in man’ (pearson et al. 1913). this most informative source described the physical signs and prevalence of the condition, as well as the psychosocial and cultural issues that surrounded it and the ways in which affected people were treated. further studies were conducted in africa. barnicot (1952) studied albinism in nigeria and found that 1 in 2858 school children had albinism; some had unusual signs of the condition, with darker hair and more tanned skin colour, whilst others had red hair. cohen et al. (1952) found that skin cancer in people with albinism in south africa was common, particularly on the exposed areas of the body. sun-barrier creams, hats and suitable clothing were necessary to prevent the development of cancer. oettle (1963) documented cases in the transkei (eastern cape province, south africa) and found the prevalence rate was 1 in 3759. later, wright, norval and hertle (2015) reviewed skin sensitivity, photoprotection and albinism, highlighted the challenges for at-risk individuals and made suggestions for how these could be resolved. in the early 1970s, the staff of the department of human genetics at the university of the witwatersrand began a series of studies on albinism (initially supported by south african medical research council grants) that continued for five decades. studies covered epidemiological, clinical, psychosocial and scientific aspects of the condition, and information increased significantly. many theses and papers were written and a comprehensive book, ‘albinism in africa: historical, geographic, medical, genetic and psychosocial aspects’ (eds. kromberg & manga 2018) was published. albinism and disability the marginalising (treatment of a person as insignificant or peripheral; oxford english dictionary) of people with albinism has been an ongoing issue over the centuries, particularly in africa (pearson et al. 1913), but publications have focused on this topic only recently. clarke and beale (2018) analysed the meaning, background and causes of marginalisation, the challenges it creates, and possible solutions to these issues. marginalisation is inextricably intertwined with stigmatisation, discrimination and human rights abuses, which in the case of albinism has led to the condition being classified as a ‘socially produced disability’ (clarke & beale 2018:257). prior to the declaration of albinism as a disability in 2013, the suggestion that albinism was a disability was contentious. the visual impairment associated with the condition can often be treated (though seldom completely corrected), and skin sensitivity is manageable with the proper use of sun-barrier creams, sun avoidance (where feasible), long-sleeved cotton clothing and hats. therefore, using the term disability in connection with albinism could be considered inappropriate. however, it is accepted that disability is not only medically determined but can also be socially produced (clarke & beale 2018). in 2006, the interaction between a person’s physical impairments and the society in which he or she lives was emphasized in the convention on the rights of persons with disabilities. in africa, persons with albinism are more visibly different from their peers than they are in western societies, where populations are mostly pale in skin colour. in addition, albinism in africa is surrounded by misunderstandings, prejudice, discrimination, and ostracism (imafidon 2019). as a result, the ‘disability rights approach’ is appropriate when facing challenges and finding solutions concerning the rights and equality of persons with albinism (possi & possi 2017). as these authors (2017) conclude: [t]he task ahead is to ensure that the needs of persons with albinism are exhaustively addressed in future policies and programmes so as to cater for the full realization of their rights. (p. 140) since the who has recognized albinism as a disability, the united nations human rights council has appointed an independent expert (ms i ero) to monitor the human rights issues of people with albinism (ero 2020). she has visited many african countries to bring these issues to the attention of governments and health departments. in february 2020, she reported to the 43rd session of the human rights council, on her visit to south africa. she commented on challenges regarding health, discrimination, education, employment, access to justice and harmful practices. she also described the community awareness initiatives that were developing and the national action plan, linked to the regional action plan on albinism in africa and adopted by the african union. epidemiology estimates of the prevalence rates of albinism range widely throughout the world. however, the few available studies on epidemiology vary in quality and reliability and in some cases are based on small, inadequate samples. a worldwide rate of 1 in 17 000 was suggested by witkop, quevedo and fitzpatrick (1983), and although this is probably outdated, no new estimates have been published. in europe, estimates range from 1 in 10 000 in ireland (froggatt 1960) to 1 in 15 000 in the netherlands (van dorp 1987). although, one state surveyed in the usa had a total prevalence rate of 1 in 17 000, the rate for the black population was 1 in 10 000, whilst that for the white population was 1 in 19 000 (witkop et al. 1983). the rates in two small geographical isolates were 1 in 227 and 1 in 213, in the hopi people of arizona and the cuna people of panama, respectively. the condition appears to be rarer in asia, and an estimate for the chinese han population was 1 in 18 000 (gong et al. 1994), whilst in a japanese population it was 1 in 47 000 (neel et al. 1949). the available statistics from the few published sub-saharan african studies, with large samples and comprehensive ascertainment methods, are all greater than 1 in 5000 (kromberg 2018b). some examples of the rates of albinism in south africa and its neighbouring countries are summarized in table 1. table 1: prevalence rates of albinism in southern african countries. the higher rates occurring in africa could be maintained by selective advantage of the carriers of a gene for albinism, if they are lighter in skin colour (as suggested by oettle 1963 and confirmed by kromberg 1985) and preferred as marriage partners, and/or by mating patterns (such as preferences for consanguineous mating). genetics of oculocutaneous albinism and genetic counselling oculocutaneous albinism is inherited as an autosomal recessive condition, and therefore it is advisable for every family with a member with albinism to have genetic counselling. an individual can only have albinism if he or she has inherited two mutated oca genes, one from the father and one from the mother. genetic counsellors can explain to the family that if an individual is affected, both parents must be carriers. and even though they themselves have normally pigmented skin, they are referred to as ‘obligatory’ carriers of a gene mutation. because affected individuals have two non-functional oca genes, pigment cannot be made and skin, hair and eyes appear pale in colour from birth onwards. both males and females are equally affected. once a couple has had a child with oca, they will know that they are both carriers and will have a 1 in 4 (25%) chance of having another child with oca; this is the same chance for every pregnancy (harper 2004). also, because the parents are carriers, their other children who do not have oca can be carriers (with a 66% risk) and the parents’ brothers and sisters can be carriers too (with a 50% risk). the inheritance pattern of oca follows the basic rules of mendelian autosomal recessive inheritance. for a more comprehensive explanation of inheritance patterns and risk calculation, see (http:/www.genetics.edu.au/publications-and-resources/facts-sheets). people with oca pass on only one of their two albinism genes to their children, so all these children will be ‘obligatory’ carriers (kromberg 2018c). if the person with oca marries a carrier, then half (50% or 1 in 2) the children, who by chance inherit the gene from both parents, will have albinism. if couples have questions on the genetics of oca, they can attend a genetic counselling clinic. presently, seven types of oca (each determined by mutations in a different gene) have been described. only three of these have been reported in africa (kromberg et al. 2012), namely oca types 1, 2 and 3: in oca1, the person with albinism has very pale skin, hair and eyes (usually blue); skin cancer risk is high; and vision usually poor throughout life. this type is very rare in africa, and so far only one case has been described (in cameroon) and confirmed by molecular testing (badens, courrier & aquaron 2006). in oca2, the person has pale skin, hair and light brown or blue eyes; the skin and hair can darken a little with age and begins to become yellowish in appearance. dark patches or freckles might develop on the skin, cancer risk is lower and vision a little better than in oca1. oca2 is by far the most common type of albinism seen in africa. in oca3, or rufous albinism, the person has pale reddish skin, fair to ginger hair, dark blue to brown eyes, hair and skin can darken with age, and skin cancer risk is lower and vision is better than in oca 1 and 2; gene mutations have been found in the tyrp 1 gene on chromosome 9 (manga et al. 1997). it is estimated that in the black population, about 1 in 8500 individuals have oca3 in south africa (kromberg et al. 1990). nearly all cases of albinism in african individuals are caused by mutations in the oca2 gene (previously referred to as the p gene) which maps to the long arm of chromosome 15. further, a common oca2 mutation has been described in southern africa; this mutation accounts for 78% of all disease-causing mutations in this population, and about 1 in 30 black southern africans carry this mutation (stevens et al. 1995). the mutation is a deletion (2.7 kb in size) within the oca2 gene (durham-pierre et al. 1994). diagnostic genetic testing for this mutation is available through the national health laboratory service in south africa. clinical considerations if an infant has albinism at birth, it is often obvious, especially in dark-skinned populations. the pale skin and hair colour are usually significantly different from that of the parents (kromberg, zwane & jenkins 1987). within a few days, eye problems become apparent, and nystagmus (fast, generally horizontal movements of the eyes), lack of focus and photophobia (increased sensitivity to light) are evident (kammer 2018). sun-sensitive skin and low vision, however, are the major health issues. the skin of people with albinism is highly sensitive to the sun because it has little or no melanin pigment to act as a barrier to the harmful effects of the ultraviolet rays (hartshorne & manga 2018). in one local study, 23% (25/111) of persons with albinism (aged 1–60 years) had solar damage, skin lesions and/or keratoses, and damage increased with age (kromberg et al. 1989). in the group of 1to 19-year-old participants (n = 76), 20% (15/76) already had sun damage. the face, cheek and eye lids were the most commonly affected sites, and squamous cell carcinoma was the most frequent type of cancer diagnosed. to prevent damage, the skin must be protected from a very early age. as soon as the child can go out in the sun, anti-actinic sun-barrier creams (spf 50) must be applied daily (and lifelong), particularly on the exposed areas of the skin. also, sun exposure from 10:00 to 15:00 should be avoided, and cotton clothing with long sleeves and trouser legs as well as hats with large brims should be worn regularly (hartshorne & manga 2018). visual problems, ranging from mild to severe, occur in all those with oca. the majority of affected people have nystagmus and photophobia and about 30% have strabismus (squinting) (kammer 2018). visual defects can result in reduced visual acuity, refractive errors and myopia, poor stereoscopic, binocular and in-depth vision. to manage these health issues, regular clinical assessment at an eye clinic is essential, starting in the first year of life. many refractive errors can be corrected with spectacles, but vision cannot be restored to normal levels. the use of dark glasses helps with photophobia. intelligence in people with albinism is within the normal range (manganyi, kromberg & jenkins 1974). therefore, education in regular community schools is recommended. however, teachers need to be informed about the condition so that they allow the affected child to sit at the front of the class (because of the low vision), away from glare, and wear a hat if necessary (kammer 2018). also, teachers need to provide enlarged printed wording in school notes where possible and permit a longer time to be taken on assignments and examinations. portable hand magnifiers and telescopes are also useful. children with oca can then cope with a little extra help from the teacher. psychosocial and cultural issues various psychosocial issues arise as soon as a child with albinism is born (kromberg et al. 1987). nurses may not understand the cause of the condition, may not want to touch the infant for fear of infection and may give the mother little or no accurate information. the mother herself may be shocked and upset; initially she may become depressed and reluctant to hold, feed and care for the infant, and (rarely) may abandon the child. however, after three months, the mother has usually accepted her child, adapted and maternal–infant bonding has developed. the father may have similar reactions to those of the mother unless he has a family history of oca; however, some fathers deny paternity and a few abandon mother and child. other members of the family may also be shocked and unwilling to accept the child, and if they do, they might be stigmatized in the community (kromberg 2018a). munyare (2004), writing on his personal experiences in kenya, states: my birth was very traumatizing to my entire family because it was hard to convince the entire community that i was one of them. (p. 31) adjustment is often difficult for the growing child as well as for teenagers and adults with albinism. hernandez and harper (2007) reviewed the personal and psychological aspects of albinism and concluded that persons with albinism face physical, social, psychological and emotional challenges. the social impact of the visible difference associated with their condition is difficult to manage, and personality problems, including low self-esteem, poor coping and social skills, may result. further, the development of social identity and self-concept may be problematic, whilst community groups tend to ostracise and reject individuals with albinism. biesecker and erby (2008:402) suggest that adaptation to living with a genetic condition requires ‘struggling effectively, working through learning for adversity and integrating the experience into one’s life’, and they added that most human beings are resilient and learn to cope; however this view might be over-simplistic. stigmatisation is common where people with a disability or people who differ in some way from their peers come into contact with community members. if a condition is rare and the community has not had any experience of it, nor of interacting with affected people, discrimination can occur. wan (2003) states that most of the prejudice towards people with albinism is because of a fear of the unknown; such fearful feelings giving stigma its power and reality. however, the myths and superstitions that surround the condition in african communities are much more of a stumbling block than the actual physical condition. attitudes towards people with albinism range from negative to extremely positive. negative attitudes have led to rejection and even infanticide, whilst positive attitudes have resulted in the individuals being considered lucky, favoured as doctors or sorcerers, or sacred and under divine protection (pearson et al. 1913). even where communities are familiar with the condition and generally accept people who have albinism, acceptance can stop short of marriage (kromberg & jenkins 1984). attitudes were, and still are, affected by the widely held myth that people with albinism do not die, but disappear. the belief in this myth unsettles the community, as well as people with albinism (kromberg & jenkins 1992). the origin and development of the myth, and why it is maintained in the community, is poorly understood. baker and djatou (2007) suggest that it may be associated with the marginalised nature of albinism as neither truly white nor black or the intermediate state of the condition and its position between two worlds (the real and the spiritual, or possibly even the living and the dead). recently, a myth, with more serious implications, has gained strength. this myth promotes the belief that medicine made from the body parts of people with albinism is powerful and effective in bringing good luck to the user (mostert & weich 2017). consequently, people with albinism have been abducted, murdered and mutilated in several countries in africa over the last decade. recent figures show that between 2006 and 2017, about 190 murders and 515 attacks were reported in 27 african countries (clarke & beale 2018). this myth has origins in the past when body parts, particularly the skin, of deceased chiefs were used to make medicines for the new chief to bring him power and success in rainmaking (eiselen & schapera 1937). the outcome of both the physical and the psychosocial factors associated with having albinism is that the quality of life of those affected is compromised. in a study on psychosocial issues conducted in malawi, the results showed that the stigmatization and discrimination people with albinism face made life difficult for them (braathen & ingstad 2006). new social situations were particularly hard to manage, but once others found the person with albinism was not so different from themselves, acceptance improved. similarly, further recent research findings from malawi show that people with oca suffer socially because of negative community beliefs and public misunderstandings (tambala-kaliati et al. 2021). another research group investigated quality of life in brazil and reported that the social reality of people with albinism needed more attention because the social segregation and myths they experienced had both medical and psychosocial implications (maia et al. 2015). these researchers added that the prejudice faced by affected people could result in emotional instability and less assertiveness and, therefore, a reduced quality of life. in addition, vision-specific factors affect many aspects of daily living and functioning, as well as quality of life; people with albinism have reported problems with vision-specific roles, distance acuity and mental health (kutzbach et al. 2009). recommendations for management soon after the birth of a child with albinism, parents should be referred for genetic counseling so that they understand the cause of the condition, how to cope with it and how to explain it to others (kromberg 2018c). this encounter should cover inheritance and recurrence risks; prognosis; physical, psychosocial and cultural aspects; and how best to manage health and education challenges (kromberg & jenkins 1984). as taylor et al. (2021:1) state, ‘a biomedical explanation helps to establish a baby with albinism as a real person with a genetic difference’, fostering greater acceptance. the child should then be referred for dermatology and ophthalmology assessments in the first year of life. the parents need to be made aware that to assist with low vision, the child should have regular assessments and appropriate visual aids (kammer 2018). also, to prevent sun damage, the child should have an annual skin examination, apply sun-barrier cream (spf 50) daily to exposed parts of the body, wear appropriate cotton clothing and avoid sun exposure whenever possible (hartshorne & manga 2018). later, both parents and children will benefit by having psychological counselling to encourage adaptation to the condition. if the children are nurtured, regarded as worthwhile individuals and raised to be assertive, independent and self-confident, they can strive to reach their potential rather than succumb to society’s negative attitudes (ezeilo 1989). to minimize stigmatisation and improve the chances that people with albinism become integrated into their communities, ongoing public awareness programmes should be initiated (tambala-kaliati, adomako & frimpong-manso 2021). such campaigns have been offered by standing voice, an international non-governmental organization (ngo) operating in tanzania and defending the rights of persons with albinism, and other ngos working in africa (clarke & beale 2018). ideally these programmes should be introduced at many levels of society, and targeted at health professionals, who will generally be the first people the mother encounters after the birth, as well as at teachers, the general public and the families themselves, who often need to advocate for their affected member. the message needs to include the fact that albinism is inherited and caused by mutated genes; many unaffected people are carriers; intelligence in affected people is in the normal range; their death is the same as that of any other person; their body parts can never make powerful medicine; the common myths are untrue; and, lastly, that albinism is a manageable condition, when properly treated. further research is also required and the quality of life in both adults and children (taylor, bradbury-jones & lund 2019) with oca should be investigated. ero (2020) has recommended that more data on health discrimination, education, employment and access to justice and harmful practices should be collected. in addition, a detailed situation (both rural and urban) analysis of people living with oca is necessary. conclusion many people are familiar with the sight of a person with oca, especially in africa. however, as this report shows, their unusual appearance, as well as the superstitions that surround the condition, can result in marginalisation, stigmatisation, rejection and a poor quality of life. good health and development are possible for people with albinism who have their needs met, receive adequate health care from trained health professionals, educational opportunities from informed educationalists and support from their families. in addition, if the community in which they live receives appropriate information, and if awareness increases, the myths and superstitions can be debunked, prejudice can be reduced and the quality of life for people with oca can be improved. acknowledgements the assistance of the national health laboratory service (nhls) and the university of the witwatersrand in providing the first author with an honorary visiting associate professorship and an office in the division of human genetics is acknowledged. competing interests the authors have declared that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions j.g.r.k. planned the article, sourced most of the references, wrote the first draft and analysed the data, whilst r.k. contributed relevant references, information on the genetics and revised preliminary drafts of the manuscript. both authors edited and approved the final draft of the article. ethical considerations this article followed all ethical standards for research without direct contact with human or animal subjects. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability data sharing is not applicable to this article as no new data were created or analysed in this study. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references badens, c., courrier, s. & aquaron, r., 2006, ‘a novel mutation (del aact) in the tyrosinase gene in a cameroonian black with type 1a oculocutaneous albinism’, journal of dermatological science 42(2), 121–124. 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challenges of persons with albinism in lilongwe district, malawi’, heliyon 7(5), e07034. https://doi.org/10.1016/j.heliyon.2021.e07034 taylor, j., bradbury-jones, c. & lund, p., 2019, ‘witchcraft related abuse and murder of children with albinism in sub-saharan africa: a conceptual review’, child abuse review 28(1), 13–26. https://doi.org/10.1002/car.2549 taylor, j., bradbury-jones, c., ogik, p., kawuma, f., betts, j. & lund, p., 2021, ‘reactions to and explanations for the birth of a baby with albinism: a qualitative study in busoga, uganda’, bmj open 11(2), e040992. https://doi.org/10.1136/bmjopen-2020-040992 van dorp, d.b., 1987, ‘albinism or the noach syndrome’, clinical genetics 31(4), 228–242. https://doi.org/10.1111/j.1399-0004.1987.tb02801.x wan, n., 2003, ‘orange in a world of apples: the voice of albinism’, disability and society 18(3), 277–296. https://doi.org/10.1080/0968759032000052860 witkop, c.j., niswander, j.d., bergsma, d.r., workman, p.i. & white, j.g., 1972, ‘tyrosinase positive oculocutaneous albinism among the zuni and brandywine triracial isolates: biochemical and clinical characteristics and fertility’, american journal of physical anthropology 36(3), 397–406. https://doi.org/10.1002/ajpa.1330360311 witkop, c.j., quevedo, w.c. & fitzpatrick, t.p., 1983, ‘albinism and disorders of pigment metabolism’, in j.b. stanbury, j.b. wyngarden, d.s. fredrickson, j.l. goldstein & m.s. browne (eds.), the metabolic basis of inherited disease, pp. 301–346, mcgraw hill, new york, ny. wright, c.y., norval, m. & hertle, r.w., 2015, ‘oculocutaneous albinism in sub-saharan africa: adverse sun-associated health effects and photoprotection’, photochemistry and photobiology 91(1), 27–32. https://doi.org/10.1111/php.12359 abstract background methods results discussion conclusion acknowledgements references about the author(s) tracey smythe department of clinical research, faculty of infectious and tropical diseases, london school of hygiene & tropical medicine, london, united kingdom thubelihle mabhena pan african treatment access movement, harare, zimbabwe shepherd murahwi leonard cheshire disability zimbabwe, harare, zimbabwe tapiwanashe kujinga pan african treatment access movement, harare, zimbabwe hannah kuper department of clinical research, faculty of infectious and tropical diseases, london school of hygiene & tropical medicine, london, united kingdom simbarashe rusakaniko department of community medicine, university of zimbabwe, harare, zimbabwe citation smythe, t., mabhena, t., murahwi, s., kujinga, t., kuper, h. & rusakaniko, s., 2022, ‘a path toward disability-inclusive health in zimbabwe part 1: a qualitative study on access to healthcare’, african journal of disability 11(0), a990. https://doi.org/10.4102/ajod.v11i0.990 original research a path toward disability-inclusive health in zimbabwe part 1: a qualitative study on access to healthcare tracey smythe, thubelihle mabhena, shepherd murahwi, tapiwanashe kujinga, hannah kuper, simbarashe rusakaniko received: 29 nov. 2021; accepted: 29 mar. 2022; published: 30 may 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: on average, people with disabilities have greater healthcare needs, yet face a range of barriers in accessing care. objectives: our objectives were to explore the experiences of people with disabilities in accessing care and identify opportunities for the health system to be designed for inclusion in zimbabwe. methods: in-depth qualitative interviews were conducted between may and june 2021 with 24 people with disabilities (identified through purposive sampling) and with 10 key informants from local and national health authorities (identified through expert recommendations). interviews explored the experience of accessing healthcare prior to the coronavirus disease 2019 (covid-19) pandemic. interviews were transcribed, coded and thematically analysed. we used the disability-inclusive health ‘missing billion’ framework to map and inform barriers to inclusive healthcare and disparities in outcomes faced by people with disabilities. results: people with disabilities experienced difficulties accessing health services in zimbabwe prior to covid-19. these experiences were shaped by health literacy, self-stigma and affordability of services, which limited demand. supply of health services was constrained by the perceived poor capacity of health workers to treat people with disabilities and discrimination. inclusion was facilitated by clinic staff support of people with disabilities’ access to medication through referral to mission hospitals and private clinics, and the lobbying of organisations of people with disabilities. conclusion: strategies to promote disability inclusion in healthcare include meaningfully engaging people with disabilities, investing in organisations of people with disabilities, protecting funding for disability inclusion, collecting and analysing disability-disaggregated data and strengthening a twin-track approach to health service provision. keywords: disability; zimbabwe; qualitative; equity; missing billion; inclusion; health system; health access. background there are approximately one billion people with disabilities globally. people with disabilities are a highly diverse group, including people with a range of impairment types, ages, genders and environments (who2011). however, across the spectrum, people with disabilities on average have additional general health needs and also often specific health needs relating to the person’s impairment (kuper & heydt 2019). consequently, a recent systematic review highlighted that healthcare needs are greater for people with disabilities (bright & kuper 2018). nevertheless, they also face barriers in accessing care, including financial, accessibility and skills and knowledge of healthcare workers (bright, wallace & kuper 2018; kuper, smythe & duttine 2018). people with disabilities therefore have higher mortality rates, worse coverage of services, incur higher healthcare costs and experience worse quality of care (kuper & heydt 2019; who 2011). this exclusion from healthcare access is a violation of their fundamental rights, as laid out in the un convention on the rights of persons with disabilities (un 2007), and will also make it difficult to reach sustainable development goal 3 (un 2015) to ‘ensure healthy lives and promote wellbeing for all at all ages’ and other health targets. barriers in access to healthcare are likely to be greater for people with disabilities in low and middle-income countries (lmics) (banks et al. 2015; prynn et al. 2021; werfalli et al. 2018). in zimbabwe, for example, the health delivery systems are experiencing important challenges following decades of under-investment (kidia 2018), and the health systems are therefore in urgent need of strengthening. here, people with disabilities should be a priority as they face stark health inequities, consistently have poorer health and difficulties receiving quality care (eide et al. 2003b) because of the barriers that they face in seeking care (muderedzi et al. 2017; pata 2017; rugoho & maphosa 2017; rukuni et al. 2018). the ‘missing billion’ report (hogan 2020; litullo 2019) (figure 1) provides a framework for how to identify components of the health system that require strengthening in order to provide disability-inclusive healthcare services. the framework proposes core service delivery components needed for inclusive health, from the perspective of people with disabilities – ‘demand’ (awareness and autonomy, affordability) and service providers – ‘supply’ (e.g. adequately skilled human resources, accessible health facilities, availability of specialised services and assistive technology). these service delivery components depend on the presence of supportive systems-level factors, including good governance and leadership on disability-inclusive health, adequate health financing and the availability of data and evidence. improving these healthcare system components should result in better effective service coverage for people with disabilities and ultimately better health status. however, evidence is lacking for zimbabwe on what the perceived challenges are to inclusive health, and key actions to improve accessibility. figure 1: preliminary framework of inclusive health systems. our qualitative study aimed to use participatory approaches to understand the experiences and perceptions of people with disabilities in accessing healthcare in zimbabwe prior to the coronavirus disease 2019 (covid-19) pandemic and identify opportunities for the health system to be designed for inclusion in zimbabwe. methods study design a qualitative study was undertaken in zimbabwe (31 may–12 june 2021) in the capital city harare and rural and urban areas of gutu to collect data to build the evidence base on disability-inclusive healthcare in contrasting settings. the data collection focused on lived experiences and perceived challenges in accessing healthcare pre-pandemic and how these could be overcome. participants and setting participants included 24 people with disabilities in gutu and 10 key informants from local and national health authorities in gutu and harare. people with disabilities were recruited through non-governmental organisations (ngos) and organisations of people with disabilities (opds) through purposive sampling. the ngos and opds recommended information-rich cases and provided the researchers with a contact list. people with disabilities were subsequently selected to ensure representation by impairment type or condition (e.g. physical, sensory, intellectual), age (children, working-age, older adults), gender and level of support needed for daily life (e.g. none or minimal, ongoing healthcare or social service needs, requiring carer support for activities of daily living). key informants were selected by expert recommendation based on their pivotal role and experience in disability programming. all participants were approached through telephone calls. only two individuals who initially agreed to be interviewed when contacted through telephone calls were subsequently unable to take part in the interviews because of health-related concerns. demographics of the 24 participants with disabilities are outlined in table 1. table 1: demographics of participants with disabilities by impairment category†, age and sex. in-person interviews were conducted at the homes of people with disabilities and at the place of work of key informants. the majority of participants were interviewed directly (face-to-face). however, carer or proxy interviews were used for children below the age of consent (aged 10 as per national guidelines) and for people with severe difficulties understanding or communicating even with available adaptations (e.g. people with hearing loss, illiterate and with no knowledge of sign language; people with severe intellectual or cognitive impairments). children aged 10 years or older but below the age of consent participated in interviews with parental consent and individual assent. inclusion of people with disabilities was supported through the provision of psychological support services when needed, sign language interpretation, accessible interview sites and transport, use of available district psychological services and researchers skilled at communicating with people with cognitive impairments. data collection interview guides with questions and prompts (appendices 1 and 2) were developed and reviewed by 10 people with disabilities during a consultative workshop in april 2021. the topic guides were cognitively tested for understanding and administered in english or shona by trained research assistants. the research assistants were three women with disabilities who had completed tertiary education. they underwent a one-day online training that included presentation of the study protocol and qualitative methods. next, they attended a two-day in-person training on data collection, with ongoing mentoring and support provided by the study team (tm, sm, sr). no interviews were repeated and transcripts were not returned to participants for comment. interviews took between 30 and 60 min and were audio recorded with written consent from the participants. data management and analysis all interviews were transcribed verbatim for analysis and translated into english where necessary. data were managed using nvivo 12. interview transcripts and detailed notes were analysed using a deductive thematic analysis (guest, macqueen & namey, 2012). a coding framework was developed using the semi-structured interview guide as a starting point, which was adapted to include additional codes and themes emerging from the data. an allied health professional and epidemiologist from zimbabwe with experience in both qualitative and quantitative research methods (ts) coded the interview transcripts to identify the key themes emerging from the data. these were discussed across the entire team, and analysis was evaluated by research team members (tm, sm, tk and sr) to ensure that interpretations were credible and valid. regular discussions with the research team, including the research assistants (three women with disabilities), took place throughout the data analysis phase to ensure content validity and context. we undertook a narrative synthesis of the findings and reported the results according to the consolidated criteria for reporting qualitative research (coreq) (tong, sainsbury & craig 2007), which is a 32-item checklist. we used the missing billion health system framework (figure 1) (hogan 2020; litullo 2019) to map and inform barriers to healthcare and disparities in outcomes faced by people with disabilities. the predominant focus was on the service delivery components of the framework, including the demand and supply-side perspectives. trustworthiness of the data and processes digital voice recordings were compared with transcriptions for accuracy. we used investigator triangulation, and ts, tm and sm made coding and analysis decisions based on a subset of the transcripts. the researchers involved in the interviews kept a record of daily activities concerning research and decisions influencing how the study was carried out. one researcher (tm) documented all steps and procedures used for a data audit trail to identify the potential for bias or distortion. ethical considerations ethical approval for the study was granted from the medical research council of zimbabwe (mrcz) (no mrcz/a/2731) and the institutional review board of london school of hygiene & tropical medicine, uk (no 22138 – 2). the three main ethical considerations included addressing participant expectations, data protection and sensitive information. we took care to describe the nature and detail of our study to avoid raising expectations of participants on the outcome of the interview process. we did not link any data to particular participants. an information sheet describing the study protocols, including data management processes, procedures for maintaining confidentiality and plans for data sharing, was given to participants during recruitment. this information was reiterated verbally as part of the informed consent process in the language of choice (english or shona). informed consent was sought before the start of all interviews and taken by the trained research assistants. the research assistants were trained on identifying the need for referral of services and were accompanied in the field by representatives of opds, should further assistance with referral be required. all interviewees were compensated for their time and transport was reimbursed. results we present the data under the five themes that comprise the missing billion framework (kuper & heydt 2019). these include demand and supply-side factors for service delivery: ‘demand’ (autonomy and awareness, affordability), ‘supply’ (human resources, health facilities, specialised services and assistive technology). table 2 provides an overview of the themes and sub-themes identified. table 2: overview of themes. demand – autonomy and awareness people with disabilities demonstrated a varied awareness of their health needs. one participant attempted multiple clinic visits for a diagnosis: ‘i also approached other doctors, i went to south africa too’ (person with disabilities 18). another demonstrated long-term awareness and understanding of the implications for the economy and society: ‘if government excludes me from their health and education planning, then i will continue to depend on them and it will cost them.’ (key informant 02) however, there was often a delay in seeking health services. health literacy was an important factor that shaped the ability of people with disabilities to realise and acknowledge their health needs; when asked why there was a delay in seeking care, one participant reported, ‘i was just very ignorant’ (person with disabilities 05). people with disabilities conveyed some understanding of the benefits of attending health facilities for general and rehabilitative needs; however, this was limited by awareness of what services may be provided. in addition, where health services may have provided medical support and advice, the internalisation of the attitudes of health workers over medical issues that were perceived to be embarrassing (self-stigma) led to limited health-seeking behaviour. explaining his reticence to seek care for incontinence, a participant stated: ‘i have never told anyone; i do not know how to talk about this.’ (person with disabilities 18) no participants, neither those living in rural nor urban areas, reported receiving ongoing education about prevention of non-communicable diseases or secondary complications to their functional impairment. demand – affordability access to healthcare was limited by lack of funds, in particular for equipment and transport. caregivers expressed concerns for the health and development of children with disabilities, and one caregiver of a child with a disability stated: ‘i heard some people say he might need toys to play with, and at the same time exercise his body, as he might balance and stand using those toys. but l do not have money to buy the toys.’ (caregiver of child with disabilities 16) funding for transportation was experienced as an additional pressure on resources, in terms of both finance and travel time to health facilities. this pressure was heightened when a service was not received and repeat visits were required: ‘the challenge was for me to go to the clinic and see for sure that the clinic didn’t have any of the medication. they usually don’t have it.’ (person with disabilities 21) ‘i then went with him to the specialist in harare hospital. when i got there, they said the specialist was not there.’ (person with disabilities 05) affordability of medication was potentially less of an issue. as examples, people with disabilities and living with hiv reported good access to antiretroviral medication (arvs) prior to the covid-19 pandemic, and people with albinism noted that they had some access to protective creams. explaining this, participants stated: ‘i used to get tablets [arvs] for six months from the clinic, i wouldn’t pay anything for it.’ (person with disabilities 25) ‘before covid it was better…we were given a three-month supply of sunscreen and lip balm at each visit.’ (person with disabilities 22) people with disabilities were advised to buy medication from private pharmacies, but this was often unaffordable: ‘i have a persistent headache but i cannot get medication because it’s sold in us$ and i do not have that money’ (person with disabilities 17). nevertheless, they perceived clinics as supporting their access to medication through securing donors for medication, and giving advice about where it may be available, such as through attending mission hospitals or buying medication from private pharmacies. in addition, facilitating factors toward achieving equitable access to healthcare included accounts of service providers who described how clinics attempted to increase inclusion through some cost savings, ‘our clinics in the district do not charge for their services.’ (key informant 08) supply – human resources people with disabilities reported that their needs were often not understood by health workers, and some believed that they are treated as ‘patients of low priority’. they perceived a lack of capacity amongst health workers to treat people with disabilities and negative attitudes about people with disabilities within the health system. for instance: ‘as a person with a disability, you cannot do some of the activities and health workers have no patience for that.’ (person with disabilities 18) they also experienced language and communication barriers: ‘if you want medical attention and have hearing loss or intellectual impairment or a speech impairment, the doctors will say that they want the patients to speak for themselves. the doctors won’t allow anyone to speak for the patient, yet the aide might be the only one who can really understand the patient.’ (key informant 3) poor referral systems and limited medical expertise compounded their experiences of discrimination, for example: ‘sometimes they don’t even take time to address you because you have a disability.’ (person with disabilities 18) ‘some health workers fear us and prefer to call senior nurses to treat us. even when we go for minor procedure like checking of one’s blood pressure, some health workers are afraid to touch us and sometimes it becomes very obvious that we are excluded.’ (person with disabilities 22) there was also variation in how people with disabilities experienced support within clinics. for example, some people with disabilities reported being recognised by clinic staff, and this was viewed in a positive light as ‘reasonable accommodation’ because people with visual impairment or older people may not have to wait in line: ‘i think it’s because of my condition, that is why i’m served quickly. i’m not sure about everyone else though.’ (person with disabilities 17) ‘if you have a known disability, you are sometimes even served first.’ (person with disabilities 12) in addition, some people with disabilities reported being satisfied with services, in particular for general health needs where ‘they always gave me the attention that i needed’ (person with disabilities 05). however, this experience was not similar to others who perceived being treated differently because of their impairment: ‘if i am with this lady [indicates to the research assistant], she can be served and i will be told to wait and be served later.’ (person with disabilities 22) support processes for reasonable accommodation were in place in some settings, but not necessarily actioned: ‘the general policy of the hospital is that they should be attending to the persons with disabilities as soon as they notice them in the queue, or help them get to wherever they want to be. that is the general policy of the hospital. but then i cannot really verify that everybody is following that.’ (key informant 05) healthcare workers also recognised that they could not identify people with disabilities in need or interact with patients once they are home: ‘if they could reach us, we were able to assist especially, for example, in terms of art provision.’ (key informant 04) programmes therefore attempted to include people with disabilities in service planning: ‘we have tried to incorporate people with disabilities in all meetings at national level, provincial level, at district level and at ward level.’ (key information 04) people with disabilities viewed opds that lobbied for inclusion in planning services and social protection programmes as supportive of their needs. nevertheless, there was little information shared by representatives of the government public health system with opds about how inclusion was planned for service provision, and in general only one opd may be invited for consultation. supply – health facilities primary healthcare clinics were located near to all participants and people with disabilities predominantly used the government public health system to access healthcare and treatment. people with disabilities frequently experienced physical exclusion with inaccessible buildings, ‘there is a big challenge because there are no ramps, they have steps only … in clinics there are no disability friendly toilets’ (person with disabilities 04), which required additional assistance of a caregiver to enable access. infrastructure and physical barriers contributed to the exclusion of people with disabilities and limited their physical access to health services. the accounts of key stakeholders highlight how health providers try to reconcile the limited resources with the priorities of patients. key stakeholders unanimously described a desire to support people with disabilities to achieve good health outcomes. their accounts are interwoven with descriptions of their perceived pressure on resources: ‘people with disabilities have different requirements, and if we check in terms of the budget indications, they need more support.’ (key informant 04) however, this has not translated to support of inclusive health facility infrastructure and physical environment in either rural or urban areas. supply – specialised services and assistive technology specialist services required additional travel to larger towns with provincial hospitals (secondary and tertiary institutions). people with disabilities regularly experienced organising transport and finances to attend appointments only to find that the specialist was not in attendance or available on that day: ‘we had gone to a provincial hospital and unfortunately the specialist was not there, and because [name] was not feeling well during that time, we were referred to a specialist psychiatric hospital. the person who was with me called an ambulance. we rushed to the specialist hospital and the doctor was not there again.’ (caregiver of person with disabilities 01) poor team communication between specialists and rehabilitation providers and limited explanation of the purpose and beneficial use of assistive technology affected the mental health and wellbeing of patients, whose experiences were characterised by worry and concern for their own health. outcomes and impact on functioning people with disabilities did not have sufficient funds to continue to attempt to access medical care or treatment following unsuccessful attempts. this often resulted in worsening of their functional impairment and secondary complications. after experiencing worsening pain and repeated hospital visits, one person explained, ‘because of the situation that i was in, i lost hope.’ (person with disabilities 18) the experience of repeated unsuccessful attempts to access healthcare was viewed as discouraging and the experience was underpinned by a loss of hope and confidence in the health system. there was limited ability to be empowered and minimal opportunity to engage in one’s own health journey. these experiences and views demonstrate that the health needs of people with disabilities in zimbabwe have not been protected, and the emergence of a pandemic presents further challenges given the competing demands and opportunities for the development and delivery of inclusive and equitable healthcare. discussion people with disabilities experienced difficulties in accessing health services in rural and urban areas of zimbabwe prior to covid-19. these barriers were experienced from the demand side, meaning the perspective of the person with disabilities, and included poor health literacy, lack of finances and self-stigma, where people with disabilities did not seek care for medical issues that were perceived to be embarrassing. service-side challenges were also noted, including perceived poor capacity of health workers to treat people with disabilities, discrimination and inadequate health facilities. outcomes for people with disabilities included decreased functioning and increased pain, and this experience was characterised by a lack of hope. inclusion was perceived to be facilitated by clinic staff who supported people with disabilities’ access to medication through referral to mission hospitals and private clinics, and opds who lobbied for inclusion in planning services and social protection programmes. our key findings are similar to those in other lmics. for example, health expenditure is typically higher for people with disabilities, and commonly reported barriers included those related to geographic accessibility, financial accessibility and acceptability of health services (bright & kuper 2018; hannass-hancock et al. 2017). in a recent meta-synthesis (hashemi et al. 2020), authors found that the choice to seek health services by people with disabilities in lmics, as well as the quality of intervention provided by primary healthcare providers, were influenced by cultural beliefs or attitudinal barriers, informational barriers, and practical or logistical barriers. likewise, whilst there is a general lack of availability of rehabilitation services in lmics (gimigliano & negrini 2017), a systematic review found that access to rehabilitation services for people with disabilities in lmics was highly variable and poorly measured within the included studies, and access to rehabilitation services was generally low (bright et al. 2018). a path toward disability-inclusive health requires more than consideration of the potential barriers and perceived challenges to inclusive health; key actions to improve accessibility are needed. demand and supply factors for health service delivery, as conceptualised by the missing billion framework (hogan 2020; kuper & heydt 2020; litullo 2019), need to be identified and improved. in zimbabwe, there is a clear need for improved education on healthcare needs for people with disabilities, support to afford healthcare such as through social protection and tackling issues around self-stigma. these strategies have been employed in similar low-resourced settings (kuper et al. 2020) with the growing global focus on disability-inclusive development. from the healthcare provider perspective, actions are needed to ensure that medical protocols do not discriminate on the basis of disability, that medical facilities are accessible, including signage and information, and to promote healthcare worker awareness and inclusive attitudes (shakespeare, iezzoni & groce 2009). these service delivery components will be supported by making systems-levels changes, which were not the focus of the current study. for instance, government departments should meaningfully engage people with disabilities in both rural and urban areas, or their representative organisations, to ensure an inclusive perspective to provision of healthcare (un 2007). supporting opds to advocate for inclusive health will improve support for people with disabilities. strengthening a twin-track approach where people with disabilities are considered both in mainstream policy and in disability-specific policy will require protecting funding for disability inclusion across all healthcare initiatives (dean et al. 2018). collecting and analysing disability-disaggregated data will inform financial measures and economic planning (abualghaib et al. 2019). our study has strengths and limitations which should be taken into account when interpreting the results. we achieved both breadth and depth of functional impairment and age range in our sample of participants. nevertheless, this is a qualitative study of a modest-sized group of people with disabilities living in rural and urban areas of zimbabwe, so it cannot be representative in the same way as a large-scale quantitative survey. researchers with disabilities were trained to undertake the qualitative data collection, which likely improved data quality through strengthening the rapport of the interviewer and participant. however, the interviewers may also have brought their own biases to the interview, based on their personal experiences. in addition, all the transcripts were coded by a single coder; nevertheless, several checks were in place to strengthen the integrity of data and interpretations. these included involving research assistants who collected the interviews in data analysis and interpretation and ongoing discussions amongst the whole team throughout data collection and analysis, particularly on our positionality and reflexivity. the missing billion framework provided a structure for consideration of challenges and solutions to inclusive health. we used this framework to consider demand and supply side service delivery factors in this study, but did not address systems-level factors such as governance and leadership. conclusion people with disabilities are a diverse group and experience inequality in accessing health services in zimbabwe. strategies are needed to better protect the health needs of people with disabilities in zimbabwe, including engaging with people with disabilities, investing in opds, protecting funding for disability inclusion, collecting and analysing disability-disaggregated data and strengthening a twin-track approach to health service provision. these actions have costs, but there is also a cost when people with disabilities are left behind (banks & polack 2014). without concerted effort to significantly improve access to healthcare for people with disabilities, the goal of universal health coverage will not be achieved (kuper & hanefeld 2018). this exclusion is also a violation of their fundamental rights, as laid out in the un convention on the rights of persons with disabilities (un 2007). finally, good health is fundamental to living a good life, including taking part in education and employment. the failure to include people with disabilities in healthcare means that we will fail to maximise their capabilities and contributions to society, and this will be to the detriment of all. acknowledgements we would like to thank florence saburi for her support in data collection as well as the community health projects for their support to this project. we also thank participants for their willingness to share their experiences with us. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions h.k. and s.r. conceptualised the study. s.m. and t.m. led data collection. t.s. conceptualised and led writing and analysis of this manuscript supported by h.k. t.m., s.m., t.k., h.k. and s.r. contributed to serial drafts of the study. all authors read and approved the final manuscript. funding information funded by ahrc, grant ref: ah/v01353x/1. the arts and humanities investigate the values and beliefs which underpin both who we are as individuals and how we undertake our responsibilities to our society and to humanity globally. the funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript. data availability the datasets generated and analysed during the current study are not publicly available, as the small number of people with disabilities makes data potentially identifying, but they are available from the corresponding author on reasonable request. disclaimer the views and opinions expressed in this article are those of the authors and do not 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transforming our world: the 2030 agenda for sustainable development, (a/res/70/1), viewed 15 march 2022, from https://www.un.org/sustainabledevelopment/sustainable-development-goals/. un general assembly, convention on the rights of persons with disabilities: resolution/adopted by the general assembly, 24 january 2007, a/res/61/106, viewed 25 october 2021, from https://www.refworld.org/docid/45f973632.html. werfalli, m., kassanjee, r., kalula, s., kowal, p., phaswana-mafuya, n. & levitt, n.s., 2018, ‘diabetes in south african older adults: prevalence and impact on quality of life and functional disability – as assessed using sage wave 1 data’, global health action 11(1), 1449924. https://doi.org/10.1080/16549716.2018.1449924 who, 2011, world report on disability, world health organization, geneva. abstract introduction research methodology results summary of findings conclusion acknowledgements references about the author(s) matthews m. makwela † department of social work, faculty of health sciences, north-west university, mmabatho, south africa elizabeth i. smit department of social work, faculty of health sciences, north-west university, mmabatho, south africa citation makwela, m.m. & smit, e.i., 2022, ‘psychosocial challenges of children with disabilities in sekhukhune district, limpopo province of south africa: towards a responsive integrated disability strategy’, african journal of disability 11(0), a799. https://doi.org/10.4102/ajod.v11i0.799 note: †, 1988–2020. original research psychosocial challenges of children with disabilities in sekhukhune district, limpopo province of south africa: towards a responsive integrated disability strategy matthews m. makwela, elizabeth i. smit received: 05 sept. 2020; accepted: 10 apr. 2022; published: 28 july 2022 copyright: © 2022. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: disability, and everything it encompasses, presents major challenges to individuals, families and communities worldwide. children with disabilities (cwd) are marginalised and excluded in most societies. discrimination and prejudice towards cwd are compounded by poverty, lack of essential services and support and sometimes a hostile and inaccessible environment. objectives: the study sought to examine the psychosocial challenges experienced by cwd in the sekhukhune district of limpopo province, south africa. based on the identified, articulated and expressed challenges, the study sought to recommend improvement of the existing integrated national disability strategy (inds) for greater responsiveness to the needs of cwd at both provincial and local levels. method: the interpretivist qualitative mode of enquiry was the chosen methodology for this study. phenomenology and descriptive research designs guided the study. purposive sampling was employed, and data were collected from 36 participants using three triangulated methods: individual in-depth interviews, focus group discussions and key informant interviews. thematic data analysis was used to analyse data. results: the findings revealed that cwd in sekhukhune experienced numerous challenges which affected their social functioning, development and general well-being. aggravating factors included stigma, labelling and discrimination; disability-specific discrimination and bullying; exclusive education; sexual exploitation; lack of governmental support and poor implementation of disability-specific policies, amongst others. conclusion: the provisions of the inds to promote inclusion, integration, mainstreaming and equitable access to resources and services remained an ideal rather than a reality for cwd in sekhukhune. keywords: psychosocial challenges; disability; children with disabilities; limpopo; south africa. introduction international human rights treaties and african regional human rights frameworks have made provision for human rights protections that apply both directly and indirectly to children with disabilities (cwd). in the south african context, ‘disability’ is defined as: [t]he limitations hindering the full and effective participation of persons with disabilities in society on an equal basis with others, which is expected to last for longer than a year, and which exists after maximum correction or control of the impairment. (national development plan 2030 [south africa] 2015a:7) drawing from these international treaties, with the beginning of a democratic government in 1994, south africa placed the rights of children high on the agenda of all government programmes. these rights are entrenched in chapter 2 of the bill of rights of the south african constitution (act 108 of [south africa] 1996), which stipulates how the needs of every child should be ensured. however, in practice, many cwd’s lives are characterised by neglect, stigma, discrimination (the african child policy forum [acpf] 2014; baffoe 2013) and an institutional failure to implement policies adopted within a developmental and rights-based framework. this is coupled with scarcity of resources across most service sectors in south africa (graham 2014:6; stats sa 2014:9), with the situation in rural communities such as sekhukhune having become dire. the prevalence of casualties amongst cwd makes it a worthy topic of discussion, not only to illustrate the intensity and complexity of the situation facing cwd, but also to attempt to level the playing field. better access to basic services begins with examining the challenges they experience, which this study aimed to accomplish in sekhukhune, limpopo province, south africa (united nations children’s fund [unicef] 2015:1). research on various aspects of disability has been undertaken in various areas of limpopo province. for instance, mulugo (2016) investigated factors amongst caregivers that contributed to the development of complications in children living with disabilities in the vhembe district. madiba (2015), on the other hand, undertook a study on the experiences of caring for children with intellectual disabilities at the bana ba thari school in the polokwane municipality of the limpopo province. from yet another angle, pilusa (2006) examined the impact of intellectual developmental disorders on family functioning in the waterberg district of the limpopo province. we contend that although the above-mentioned studies involved cwd, it was difficult to link their studies with the challenges cwd are confronted with and see this as a gap that needed to be filled. in south africa, the white paper on the rights of persons with disabilities (wprpd [south africa] 2015b:146) recommended that any research undertaking on disability must ensure that it advances the rights of persons with disabilities and contributes to the implementation of the integrated national disability strategy (inds). this study is a direct response to that recommendation. the study aimed to examine the psychosocial challenges of children living with disabilities in sekhukhune, limpopo. based on the identified, articulated and expressed challenges, the study sought to recommend the improvement of the existing inds for greater responsiveness to the needs of cwd at both the provincial and local levels. conceptualisation of disability disability is a complex, dynamic, multidimensional and contested phenomenon. to date, no single definition of disability has achieved international agreement (acpf 2014:15; world health organization [who] 2011:3). various disability organisations, together with researchers from social and health sciences, have identified the role of physical and social barriers in disability. similarly, graham (2014:11) described disability as ‘a problem in a body function or structure; an activity limitation, and a difficulty encountered by an individual in executing a task or action’, with restriction of participation in societal activities. this has paved the way for the transition from an individual, medical perspective to a structural, social perspective which perceives people as being disabled as a result of societal conditions (who 2011:4). the united nations convention on the rights of persons with disabilities (uncrpd), as cited by who (2011:4), recognises persons with disabilities as individuals living with long-term physical, mental, intellectual or sensory impairments which, when interacting with various barriers, may hinder their full and effective participation in society in comparison with their abled counterparts. this definition provides a basis for understanding disability in relation to the social barriers that restrict full participation over and above impairments, as presented by the social model of disability as supported by acpf (2014:15). in this study, disability was conceptualised as a social construct, which entailed an acquired behaviour that can either be reconstructed or deconstructed. this meant that instead of focusing solely on the impairments of cwd, emphasis was placed more on the barriers created by society in limiting their social functioning and full participation in economic and societal activities. the prevalence of disability amongst children according to unicef (2013:10), cwd constituted between 93 million and 150 million people globally. however, in south africa, statistics south africa (stats sa) indicated that about 2 870 130 (7.5%) people in south africa were living with some form of disability. of the figures provided, cwd constituted about 25% (718 409) of people living with disabilities (stats sa 2014:63). it is evident that the number of cwd in south africa has increased remarkably since the 2005 figure of 5%, to 25% in 2014. the acpf (2014:16) stated that the prevalence of disability amongst children was challenging to assess accurately, not only because of difficulties relating to standardised definitions, but because of incomplete data collection and inaccurate statistical results. in agreement, the department of social development (dsd), department of women, children and people with disabilities (dwcpd) and unicef (2012:6) in the south african situation analysis report of cwd (2001–2011) posited that measuring disability amongst children is inherently more difficult. this is attributed to the developmental and growth processes which children undergo. this relates to learning to walk, talk, read and write, inter alia. these evolving characteristics amongst children complicate the task of assessing functioning and distinguishing significant limitations from variations in normal developmental processes (dsd, dwcpd & unicef 2012:6). therefore, the researcher enters the caveat that some available figures may be speculative. however, although the available figures may not be an accurate reflection of the prevalence of cwd globally and in south africa, they are not entirely without significance when considering the magnitude of the challenges facing cwd. factors causing and contributing to impairments amongst children globally and in africa, disability is believed to be caused by a number of factors, which many authors argue could be prevented with proper intervention. two factors, namely health and poverty are identified and discussed below. according to smith (2011:36), preventable disease, congenital malformation, birth-related incidents, psychological dysfunction and physical injury all constituted child disability. in its african report on cwd, the acpf (2014:19) stated that in africa, illness-related infection accounted for about 65% of disability cases amongst children, complications during birth and birth processes accounted for 17%, whilst accidents accounted for 11%. over the past decade, human immunodeficiency virus (hiv) and acquired immunodeficiency syndrome (aids) had also contributed significantly to impairments amongst children globally (njelesani 2013:13). poverty and disability were inextricably connected in that disability was both a cause and a consequence of poverty (unicef 2013:16; wprpd 2015b:22). the innocenti research centre (irc) (2007:5) maintained that the correlates of poverty, such as inadequate medical care and unsafe environments, significantly contributed to the incidence and impact of childhood disability and further complicated efforts for prevention and response. the acpf (2011:14) posited that poverty was experienced mostly in underdeveloped communities and that children living in rural areas were disproportionately more susceptible to being born disabled than their counterparts in urban areas. considering the inextricable link between poverty and disability, irc (2007:6) argued that effective action to reduce poverty would address and reduce the prevalence of disability amongst children. psychosocial challenges experienced by children with disabilities the psychosocial concept denotes interaction of environmental circumstances on the minds of individuals. it refers to any aspect connected to the psyche, consciousness, personality and social context of an individual (kirst-ashman 2010:176). in this study, psychosocial referred to influences of social factors on the psychological and behavioural components of cwd. children living with disabilities need care and support to enable them to cope and function effectively. the united nations children’s fund (2013:10) asserted that even though provision had been made through legislative frameworks to promote and protect the rights of cwd, social barriers continued to restrict their effective participation. baffoe (2013:187) and world health organisation (who) (2011:6) agree with researchers’ views in this study that these societal barriers limited cwd’s ability to access opportunities, privileges and resources and to participate fully in the life of their community. some of the stated barriers included ‘social exclusion, stigma, discrimination and prejudice, negative societal perceptions, ritualistic killings of cwd and exclusive education system’. central to the many problems faced by cwd is social exclusion. it is defined by giddens and sutton (2017:543) as ways ‘in which individuals may become cut-off from full involvement in the wider society’. it entails social factors that prevent cwd from accessing equal and equitable opportunities presented to most of the population. the problem of disability lies not only in the impairment of function and its effects on individuals, but more importantly, in their relationship with broader society. the marginalisation of cwd infringes on their democratic rights and makes them vulnerable to abuse and ill-treatment (acpf 2014:3; patel 2005:175). negative attitudes towards cwd are pervasive in different spheres of society. these attitudes were evident from high-level authorities and policy enactors in government to traditional and religious leaders in urban and rural communities. they paved the way for the marginalisation of people living with disabilities and deprived them from partaking in socio-economic activities. (acpf 2014:29). adding to the struggles faced by cwd was stigmatisation from family members, fellow learners, friends and the community at large, making them feel inferior and unaccepted. supporting this view, giddens (2006:269) explained that stigma was a relationship of devaluation in which an individual was disqualified and rejected by society. further related to stigma is discrimination, which denotes unfair treatment and prejudice based on societal preconceived ideas without substantiated facts, thus devaluing a person’s self-esteem, worth and dignity (patel 2005:303). negative beliefs about what causes disability and the limitations of people with disabilities were often firmly held by societies and were difficult to dispel. such societal perceptions and attitudes were mostly based on misconceptions, fears and misunderstandings that exposed cwd to prejudice and discrimination, giving rise to the denial of their basic human rights and access to the societal resources accorded to their abled counterparts (baffoe 2013:188). exacerbating the challenges faced by cwd was the negative treatment by their family members, which included name-calling, labelling and restrictions from performing certain household chores (acpf 2014:32 & 34; njelesani 2013:25). a disturbing outcome of negative attitudes was the brutal and ritualistic killings of cwd because of superstitious and erroneous beliefs. in some cases in africa, cwd were subjected to abuse and some were killed for body parts. in february 2018 in mpumalanga, south africa, two children, one of whom was living with albinism, were kidnapped and killed for their body parts (the citizen 2018). the united nations (un) reported that in some communities, erroneous beliefs and myths, heavily influenced by superstition, put the security and lives of cwd at constant risk. these beliefs and myths were centuries old and were present in cultural attitudes and practices around the world (un 2013). an understanding of these differences and complex interactions was fundamental in addressing disability-related stigma and discrimination within communities (acpf 2014:31–32). most cwd remain excluded from equal access to education and its associated benefits. this has a detrimental implication in contending for better jobs in the future and making positive marks within the economic spectrum, with most cwd in rural areas being at risk (unicef 2013:20). according to the irc (2007:17), cwd’s right to education is enshrined in human rights treaties, including articles 28 and 29 of the united nations convention on the rights of the child (uncrc). a critical implication is the requirement for education to be compulsory and to be made freely available for all including cwd, and if necessary, for the state to provide financial assistance (tesemma 2011:8). disability legislative frameworks since the inception of democracy in 1994, south africa has made some progress in ensuring the protection of all its citizens, including cwd. through the constitution and the bill of rights, the country has enacted and ratified an enabling legislative framework based on the values of freedom and equality for all. this takes into cognisance efforts to recognise the rights of cwd at both the national and international levels and to mainstream disability into the development agenda (acpf 2011:17; irc 2007:32; stats sa 2011:7). the following policies were central to the study: the white paper on disability was implemented to update the 1997 inds, to integrate obligations in the uncrpd and to respond to the continental plan of action for the african decade of persons with disabilities (1999) as asserted by acpf (2011:18). its central objective was premised on the protection and promotion of the rights of people living with disabilities in south africa (wprpd 2015b:38). specifically, the overall purpose of the wprpd is to provide a mainstreaming trajectory for realising the rights of people with disabilities, including cwd, through the development of targeted interventions that seek to remove barriers and apply the principles of universal design. it guides the assessment of all existing policies and ensures that the development of new sectoral legislations and policies, programmes and budget and reporting systems are in line with the constitution and the ratified international treaties for the protection of the rights of cwd (wprpd 2015b:38). the integrated national strategy (ins) policy document supplements the provisions made in the 1997 inds document by categorically focusing on addressing the needs of cwd within the south african context. as a guiding legislative framework for cwd, the ins incorporates the recommendations and provisions of ratified and adopted international and regional treaties, as well as local policies protecting and promoting the rights of cwd. the principles of the ins include respecting the dignity and the right to survival for cwd, realisation of fundamental freedom and active participation in the community, promotion of self-representation and participation in the decision-making process, access to basic education and developmental opportunities accorded to other children and equitable access to resources (south africa 2009:26). theoretical framework guiding the study this denotes the set of transportable ideas used to formulate, predict and understand the phenomenon of a research study (rubin & babbie 2005:43; shaw et al. 2013:282). the theories outlined below gave direction to the study. this study was based on the ecological systems perspective developed by bronfenbrenner. gitterman and germain (2008:2) explained that the ecological thinking model focuses on the reciprocity between people and their environment. according to teater (2014:25), the fundamentals of an ecological perspective are based on the person-in-environment spectrum which denotes the transactional fit between cwd and their environments. the key elements of the ecological perspective are the growth, development and potentialities of cwd, taking into account the attributes of their environment that support or undermine the realisation and expression of their potential. the rationale behind the application of the ecological systems perspective was to develop an understanding of the adaptive fit or lack thereof between cwd and their environments. figure 1 provides an illustration of the transactional fit between cwd and different systems and subsystems impacting on their psychosocial functioning. figure 1: bronfenbrenner’s ecological systems perspective. research methodology research methodology constitutes the blueprint of scientific inquiry and provides a means through which intellectual development and understanding of phenomena are executed and enhanced (may 2011:1; taylor, bogdan & devault 2015:14; walliman 2016:24). the following research methodology was employed. research approach the study employed an interpretivist approach within a qualitative mode of inquiry. hennink, hutter and bailey (2011:8) explained that qualitative research permits the researcher to examine people’s experiences in detail by using specific sets of research methodologies. it seeks to study a research problem from a local perspective as presented by the research participants (jha 2014:102). on the other hand, the interpretivist paradigm typically involves participants’ own written or spoken words and observable behaviour. it is concerned with developing explanations of social phenomena as detailed by the research participants (hancock, ockleford & windridge 2009:7). this approach was oriented towards exploring the phenomenon of child disability intensively to provide a detailed description of the psychosocial challenges experienced by cwd in sekhukhune. this type of research paradigm typically studies participants or systems by interacting with and observing them in their natural environments and focusing on their meanings and interpretations (moriarty 2011:2). in this study, interacting with cwd and the people who render services to them and locating them from their schools, homes and community was imperative. research design research design constitutes the blueprint for the collection, measurement and analysis of data and subsequently indicates which methods are appropriate for the study (allmer 2012:1; sahu & kumar 2013:25; walliman 2016:37). based on the qualitative components of the study, phenomenology and descriptive research designs were employed. rubin and babbie (2016:304) asserted that phenomenology entailed the philosophical paradigm for conducting qualitative research that emphasised people’s subjective experiences and interpretations of the world. it was founded on the ideology that rich information is unearthed from participants’ constructs and sense of their lived experiences, which is in line with a qualitative approach. in the context of the study, this meant eliciting rich data regarding the psychosocial challenges experienced by cwd as narrated first-hand. on the other hand, descriptive research design was concerned with providing rich details about the participants’ environment, interactions, meanings and everyday lives, thus providing a broad description of the phenomenon as detailed by the research participants (rubin & babbie 2016:61; walliman 2011:10). target population the target population for the study was cwd, both male and female, residing in sekhukhune within the age range of 10–17 years. they are children as defined in the children’s act 38 of 2005 (south africa 2005), 2014 (amended); ‘child’ means a person under the age of 18 years. in this study, a child is defined as falling within the ages of 10 and 17 years as they were presumed to be in school and using services such as transport, health care services and other community facilities. as such, they were considered able to share their experiences first-hand. an in-depth individual interview was conducted with each in their home setting under parental supervision. the interview took between 50 min and 60 min using a semi-structured interview schedule. interviews were conducted in sepedi to accommodate those participants who did not understand english and only comprised of seven from a sample of ten. the study population also included key informants who worked in close collaboration with cwd and were knowledgeable about the challenges cwd in sekhukhune experienced. key informants included schoolteachers from both mainstream and special schools, health care practitioners, community leaders and social workers who worked in close collaboration and provided diverse services to cwd. also forming part of the key informant group were parents and/or primary caregivers of cwd who fulfilled caring and rearing roles, and who were well suited to providing rich descriptions of the challenges encountered by cwd. these were people who frequently interacted with cwd and had information regarding the psychosocial challenges impairing their social functioning and general wellbeing within sekhukhune. the said institutions were approached and permission requested from the education department and dsd for children in special schools. the department of health also gave permission for the three health care professionals. these were key informants (36; 10 parents, four caregivers, three social workers, three teachers, three health practitioners and three community leaders) who were subjected to a focus group with a set of questions that allowed for in-depth discussions. the remaining three cwd also participated in a focus group in the special school where they resided. these are children whose disabilities included blindness and albinism. this was held in a private room free from disruptions. sampling technique and sampling type the study employed a non-probability sampling technique which bases its notion on the assertion that the odds of selecting any participants in the study are not known. the sampling process was in line with the qualitative approach, phenomenology and descriptive research designs guiding the study (eds. de vos et al. 2011:394; rubin & babbie 2016:61). the study employed two types of non-probability sampling strategies, viz. purposive and snowball sampling. ritchie et al. (2013:113) stated that in purposive sampling, the selection of participants, setting or other sampling units is criterion-based, which was a sample of cwd in the age range of 10–17 years. children from both genders (that is, male and female) were selected who were positioned to reason logically and to provide first-hand information. informed consent was sought from their parents and caregivers. the snowball and/or chain sampling was used to locate one or two families of cwd, and then asked them to name other likely participants. this form of sampling facilitated the identification of hard-to-find participants as asserted by babbie and mouton (2001:167). this was consistent with the qualitative approach and phenomenology design guiding the study (creswell 2016:109; walliman 2016:115). unit of analysis (sample size) the sample was composed of 36 participants who were purposefully selected, comprising 10 cwd, 10 parents, four caregivers, three teachers, three social workers, three health care practitioners and three community leaders who worked in close collaboration with cwd in sekhukhune. the final sample size was adjusted, however, based on the principle of theoretical saturation, in which the researcher stopped interviewing once it was found that participants were repeating similar information, with nothing new forthcoming (maree 2011:82). data collection the essence of the qualitative data collection process is to capture perceptions and lived experiences as narrated by participants, translating them into rich analyses and building credible findings relating to the study phenomenon (kabir 2016:202). data were collected using three triangulated methods, viz. in-depth individual interviews (seven of the 10 cwd), focus group discussions and key informants’ interviews (parents, teachers, caregivers, social workers, community leaders and three cwd). honorene (2017:91) asserted that triangulation is a powerful technique which promoted validation of data through cross-verification. all sessions were conducted once and lasted between 50 min and 60 min. data analysis in this study, thematic data analysis was employed. this refers to the process of identifying, analysing and reporting patterns or themes in data as postulated by whittaker (2012:96). the rationale behind selecting thematic analysis was that the crux of qualitative analysis is to bring meaning to respondents’ words by identifying themes or patterns, ideas, concepts and/or behaviours that will facilitate understanding and then organising them into coherent categories that summarise and bring meaning to the text (maree 2011:110). the steps followed in thematic analysis was guided by bricki and green (2007:23–24), which involved the following: reading and annotating transcripts, identifying themes, developing coding scheme, coding data and producing the final report. ethical considerations this refers to the preferences that determine and influence the behaviour and conduct of researchers when conducting a study with experimental subjects or human participants (eds. de vos et al. 2011:114). ethical approval was sought before the study could commence and from entities like department of social development (dsd), hospitals and gatekeepers. ethical approval was acquired from north-west university’s research ethics regulatory committee (reference number nwu-hs-2017-0191) and from the limpopo provincial research ethics committee (reference number rec-111513-038). this process was completed with numerous additions and deletions as recommended by the review committee. when this process was concluded to the satisfaction of the ethics committee, limpopo provincial research ethics committee was approached and permission was granted, whereafter data collection ensued. to ensure that the research is ethically sound, and that no harm was inflicted on participants, the following key ethical guidelines were applied which included informed consent, voluntary participation, privacy, confidentiality, anonymity, beneficence and non-maleficence (bless, higson-smith & kagee 2006:143; eds. de vos et al. 2011:116–117). results this section presents and discusses the findings of the study, synthesised with direct quotes from participants, the literature and findings of various researchers within the disability context. given the findings of the study, the following themes outlining the psychosocial challenges experienced by cwd in sekhukhune emerged. theme 1: stigma, labelling and discrimination information gathered showed that some children at school and within their homes did not want to associate, interact with or play with cwd because of their disabilities. considering the findings of the study, it is evident that such discriminatory practices were perpetuated by a lack of knowledge by some educators as well as peers on disability-related issues and on ways to accept and live with cwd. in other instances, cwd were labelled by their peers, family members and community members in relation to their specific disabilities, whilst others imitated their impairment, which has an adverse impact on cwd’s confidence, self-efficacy and self-esteem. without proper intervention, this can perpetuate isolation and withdrawal from societal activities. a participant from a mainstream school stated that: ‘[…w]hen i walk around the school during break-time, some learners will imitate the way i walk and laugh at me and others would call me names….’ (participant 4, learner with disability) a social worker commented: ‘discriminatory attitude has a lot of bearing on their functioning, especially on their psychological functioning because they do not see themselves as human beings. secondly, they start comparing themselves to others as ways of understanding what distinguishes them from others. and they also have… [pause] they start to develop withdrawal on some activities. they start feeling inferior and looking down on themselves. they don’t believe in their capabilities.’ (participant 3, social worker) confirming these findings, various authors within the context of disability have argued that a lack of knowledge and awareness of disability and their associated characteristics perpetuated the adverse way cwd were received and treated by society (acpf 2014:29; rohwerder 2018:2). in addition, baffoe (2013:193) asserted that, apart from the personal pain and moral degradation brought on by stigma, labelling and discrimination, such behaviours could also prevent cwd from seeking help or participating in societal activities and could see them withdrawing altogether. theme 2: disability-specific discrimination and bullying from the caregivers, it was found out that children bully each other too. this occurred where a differently disabled child would bully another with a different disability, for example, deaf children bullying and discriminating against blind children. this behaviour tended to promote disability subcultures within the school, that is, deaf children grouping themselves as a unit, and likewise with blind children and children with albinism. a participant from the caregivers had this to say: ‘children from the deaf section don’t get along with children from the blind section. they always bully blind children and steal their food, knowing that they cannot chase or identify them….’ (participant 5, caregiver) another participant confirmed that: ‘[…i]t has become the norm that one has to associate and become friends with children who share a similar impairment. in that way it makes it easy for us to interact.’ (participant 7, learner with a disability) lipson and rogers (2000:213) stressed that cwd sharing a subculture usually shared a language or communication pattern, values and interaction patterns which distinguished them from others. children with disabilities forming part of subculture groups tended to share values and the lifestyle of the dominant disability culture, but also endeavoured to maintain their distinctive mores and lifestyles which, without proper guidance, could promote discrimination and other harmful practices related to bullying and marginalisation of cwd who were not within their defined subculture. the conclusion that could be drawn from these findings is that such discriminatory practices perpetuated segregation amongst cwd based on the belief that certain disabilities were superior to others, thus promoting isolation and marginalisation. ervin (2011:8) agreed that bullying had an adverse effect on the child experiencing the ordeal, which often led to withdrawal, anxiety, depression and suicidal thoughts. furthermore, bullying interfered with cwd’s learning and performance at school, which perpetuated poor results and the risk of dropping out. theme 3: lack of special schools and exclusive education (mainstreaming) the study found that the lack of special schools was a challenge for most cwd in sekhukhune. the available schools were unable to cater for the majority of cwd in the district, and children were compelled to travel to other districts or provinces in search of schools tailored for their specific disability. a participant explained: ‘my family tried to find a special school closer to my home that caters for deaf children but without luck, and as such i had to come and study at the special school for the deaf and blind, because there are no schools in my village that teach braille….’ (participant 7, learner with a disability) a social worker reported: ‘the system is unable to accommodate these children, and in some instances, you find teachers saying that they cannot work with a disabled child, and they ask if we (social workers) can’t find another school for them…[pause] and the special schools which i know are few, very, very, few. so that is why most children don’t attend school, they just stay at home….’ (participant 3, social worker) confirming this finding, the integrated national strategy on support services to cwd (south africa 2009:10) posited that the education system had failed to promote access to education for cwd. this was attributed to the finding that mainstream schools were not yet equipped to accommodate cwd (education white paper 6 [south africa] 2001:9), and teachers had not been trained to integrate disability-specific teaching and learning into their curriculum, thus leaving cwd excluded from mainstream education, as confirmed by unicef (2013:20). given the findings, it is evident that much still needs to be done to ensure that cwd were fully mainstreamed and for the principle of inclusive education to be realised in sekhukhune. learners with cerebral palsy or autistic learners and those with other disabilities of a physical nature may not attend a mainstream school and would normally be referred to ‘special schools’, hence the exclusion. it is also a concern that schools are not readily prepared to accommodate cwd, regardless of the type of the disability, and that no efforts have been made to equip teachers on how to handle such children, thus reducing the stigma which in itself is a challenge to cwd. the integrated national strategy is meant to work collaboratively with all stakeholders and so make sure that inclusivity is upheld. theme 4: neglect the findings revealed that some cwd in sekhukhune were neglected by their parents and caregivers. a concern was raised regarding cwd attending special schools who stayed in the schools’ boarding facilities and who had been neglected by their families, who had not ensured that they had all the items they needed to meet their specific needs. it was found that cwd were taken to school with incomplete uniforms, on many occasions dirty and ragged. on this point, a social worker stated: ‘the most frequently reported cases are for neglect. you find that these children don’t have clothes, don’t have snacks and they don’t have shoes. these are some of the cases that are reported. they don’t care if the child stays at boarding… [pause] they just let them leave without anything. for those who are blind, they don’t even check if the child has enough clean clothes or not…is like they take advantage that the child cannot see.’ (participant 1, social worker) furthermore, medical neglect which entailed depriving cwd of access to medical care emerged in the findings. health care practitioners disclosed that some families did not adhere to regular medical procedures by taking cwd to health care facilities for their regular medical assessments, check-ups and/or immunisations, thus putting their health at risk. educators are not always equipped to deal with learners with disabilities and as such cannot intervene on their own, unless parents have briefed them on the learner’s disability. the school will intervene if it is an emergency by, for instance, calling an ambulance should such an incident occur. a nurse stated: ‘at times, parents don’t bring children to clinic for growth monitoring. they tend to hide these children at home and bring them to the clinic when they are really sick and unable to do anything. that is when they are brought for medical treatment.’ (participant 1, nurse) the acpf (2014:29) maintained that these negative attitudes paved the way for the deprivation and marginalisation of cwd in societal activities and access to services. a child with disability alluded to the far-flung resources as a barrier, explaining thus: ‘…there no facilities here, even the south african social security agency (sassa) office is in mogaung village. we have to take a taxi to luckau or groblersdal to access them’ (participant 2). theme 5: sexual exploitation key informants reported that cwd in sekhukhune were subjected to various forms of abuse and maltreatment at home and within the community. the recurring abuse recounted by key informants was sexual exploitation, whereby community members took advantage of these children’s vulnerabilities. a social worker reported: ‘children with hearing impairment [deaf] are mostly abused sexually. people take advantage just because they cannot communicate verbally and also because they are unable to relate their story to others.’ (participant 1, social worker) theme 6: poor infrastructural development and lack of facilities lack of infrastructural development impeded effective integration, accessibility and accommodation for cwd in sekhukhune. the village had no proper roads to accommodate cwd in wheelchairs and no recreational facilities for cwd. the findings indicated that in most development programmes, disability-specific programmes had been overlooked. for instance, no sports facilities had been specially developed to accommodate cwd, and the available facilities did not meet the prescribed standards and posed a risk to the functioning, development and general well-being of cwd. confirming this, a social worker said: ‘we have one stimulation centre and the service they provide is poor, extremely poor, and the hygiene is a challenge. we have a multidisciplinary team from health, occupational therapists and so forth visiting the centre but nothing is done to improve the condition of that centre, and to my surprise the government still funds such facilities which pose a threat to these children.’ (participant 3, social worker) agarwal and steele (2016:3) concurred that accessible infrastructure promoted an inclusive environment for cwd and allowed them to enjoy their civil, social and economic rights. it also encouraged independent living and equal participation in societal activities. conversely, an inaccessible environment with an underdeveloped infrastructure promoted exclusion from education, social contacts and full integration into the life of the community. theme 7: shortage of health care facilities the shortage of health care facilities in various municipalities within sekhukhune compounded the psychosocial challenges faced by cwd. most villages had no health care facilities, compelling cwd and their parents or caregivers to travel long distances or to go to neighbouring villages to access health care facilities. a social worker commented: ‘fetakgomo itself does not have a hospital, so the children have to be transferred to another municipality just to get assistance, and it does not make sense. the clinics we have only work for a few hours; some work till 8:00 pm or 9:00 pm, so when children have problems during the night, where are we supposed to take them to because we don’t even have a hospital? … it all becomes a burden and a strain for children to access a health care facility and be assisted.’ (participant 3, social worker) the lack of appropriate or accessible health care services was argued to have an adverse impact on cwd. participants maintained that, based on the issue of inaccessibility, some cwd rely on self-diagnosed or over-the-counter medication, and some do not adhere to regular immunisation. on this note a social worker posited that: ‘it impacts on the children with disabilities negatively as some of them will resort to self-diagnosed medication, which is not good for them as they need to be assessed by a medical practitioner who will make a prescription for them. some might not even go for their appointments and for immunisation, you see? … [pause] so there are a lot of implications.’ (participant 3, social worker) section 27 of the constitution and article 23 of the united nations convention of the rights of the child (uncrc) promote the right to health care, stipulating that cwd, like all other citizens, had the right to access basic health care services, including the right to reproductive health care, and that these provisions had to be made freely available within their area of residence, which was not always the case for cwd in sekhukhune (acpf 2014:43; constitution of the republic of south africa 1996:11; un human rights 1989:7). theme 8: lack of government support the findings revealed that a lack of government support in enhancing the functioning of cwd in sekhukhune impeded the integration of cwd into mainstream society. the united nations children’s fund (2013:4) emphasised that under the uncrpd, cwd and their families had the right to an adequate standard of living and were entitled to subsidised or free support services such as free education, day care, respite care and social protection. based on the findings of this study, such provision remained an unrealised ideal for cwd in sekhukhune. a parent commented: ‘government promised us that child with disability will attend school for free but these children are still made to pay school fees. my concern is that does free education cater only for abled children, because these ones (children with disabilities) are discriminated against. we have to pay r1500.00 for their fees and yet we are told that education is free.’ (participant 1, parent) the acpf (2011:5) maintained that the government should exempt children from paying school fees as a way of enhancing the right to education and increasing enrolment and retention of children who would otherwise have dropped out. theme 9: poor implementation of disability-specific policies the study’s findings showed that poor implementation and monitoring of disability-specific policies to promote integration, mainstreaming, accessibility and inclusiveness of cwd in sekhukhune remain an obstacle. a parent maintained that: ‘our policies protect the rights of children with disabilities. the constitution has made the provision on the protection of people living with disabilities and is against any form of discrimination, but the issue is that such policies are being overlooked and poorly implemented.’ (participant 1, parent) judy et al. (2014:55) argued that although there has been expansion in inclusive mainstream education policies, the evidence remains skewed and unclear on the effectiveness of these developments in augmenting the level of inclusiveness for cwd. it was found that a lack of training regarding a disability-specific framework and policies for service providers hampered the effective and efficient rendering of services to cwd. in this regard, a caregiver maintained that: ‘they must capacitate us on frameworks and guidelines that focus on children with disabilities. they must provide us with workshops so we can be informed about these children.’ (participant 2, caregiver) the researchers are of the view that not all schools or district offices have really put an effort in implementing inclusive education. the gap is seen in the school heads as they do receive documents, reviews and some policies and should make a point that all involved parties are vested with the information. as already mentioned, children with different disabilities cannot be put under one umbrella when it comes to excluding them from mainstream education. blind learners come to mind here; they have a special writing system and the schools are not disability-friendly, lacking wheelchair ramps, guide-dogs and other assistive devices that the learner with a disability would need. summary of findings an assortment of challenges faced by these children in the rural areas of sekhukhune was explored in this study. the study revealed that cwd were subjected to many psychosocial challenges, found to be detrimental to their social functioning, development, and general well-being. the findings of different authors revealed, as shown in the reviewed literature, the challenges experienced by cwd in different countries and in south africa, most of which were confirmed in this study. the challenges faced by cwd included exclusive education, stigma, labelling, discrimination, poor infrastructural development, neglect, sexual exploitation, inter alia. the findings suggest that the ineffectiveness of the integrated national strategy (ins) in addressing the psychosocial challenges experienced by cwd in sekhukhune could be attributed to a lack of government support and poor implementation of disability-specific policies. addressing this issue would require concerted, integrated and coordinated effort from various spheres of government to ensure that the provisions made in the inds and other legislative frameworks promoting and protecting the rights of cwd on an equal basis with others are ensured. the first step is to convene workshops and information sessions to share the findings with relevant stakeholders. the relevant stakeholders would be the director general, who would give directives to directors reporting to him. it is hoped that from this angle especially, the sekhukhune district in particular would initiate the recommendation after the findings have been shared and start with the process; the other provinces can follow suit, so as to reach out to all cwd. the aim is to ensure that all are informed and obtain their buy-in. the paper has been presented to the conference that took place in 2021. the findings further outlined the need to ensure that education is made freely accessible to cwd. recommendations given the findings of the study, the overarching recommendation is to address the challenges faced by cwd in sekhukhune by promoting the responsiveness of the integrated disability strategy. flowing from the above-named recommendation, the following recommendations are proposed: that the provisions made in various international and local declarations and policies are fully implemented. this includes training of professionals on disability-related frameworks and providing the necessary resources toward the realisation of the provisions made in disability-specific legislations. that government put measures in place that prioritise the care, protection and integration of cwd in terms of resources to ensure that these children are supported. to ensure that the provisions of the integrated national strategy in support services to cwd are realised, including addressing gaps and barriers in service accessibility, alleviating poverty, increasing measures for social grant accessibility and improving service delivery in rural areas. to develop monitoring and evaluation mechanisms to assess progress in the implementation of the provisions of the integrated national strategy in the promotion of inclusiveness, integration, accessibility, mainstreaming and eradication of poverty amongst this vulnerable group in rural and under-developed areas. this can, therefore, be attained by promoting access to inclusive education for cwd. the government should provide a full subsidy to cover the fees and other education-related expenses such as transport costs, boarding or hostel fees and learning materials. conclusion this study has proven that cwd in sekhukhune face many challenges which may not only be physical, but psychosocial as well. it has been found that cwd are discriminated against, that they are being bullied and stigmatised. some are neglected, sexually exploited and many more experience shortage of health care, lack of appropriate infrastructure and exclusion from mainstream education. it is hoped that, with the recommendations put forth, more care and support will be forthcoming as directed in the inds. the plight of cwd has been shared with interest groups and papers were presented in line with some of the interventions and awareness-raising in support of the integrated strategy. acknowledgements the authors would like to thank the participants who gave their consent, the limpopo premier’s office and relevant government heads of departments (hods). competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions this is the original work of the first author, m.m.m., as a student and his promoter and second author, e.i.s. this work was never written by anyone else than the two authors and never submitted somewhere else. funding information this research received no specific funding from any agency in the public, commercial or not-for-profit sectors besides the ernst and ethel eriksen grant. data availability data utilised in this research were from participants who gave consent to take part in this study. information and the report from the research are available in the north-west university (nwu) archives for scrutiny and further research, particularly in improving services on an integrated level. disclaimer the views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors. references acpf (african child policy forum) 2011, children with disabilities in south africa: the hidden reality, 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york, ny. walliman, n., 2016, social research methods: the essentials, 2nd edn., sage, london. world health organization, 2011, world report on disability, who, geneva. yokotani, k., 2010, promoting inclusive education in neluwa: a tea plantation area in sri lanka, through the community-based rehabilitation programme, unpublished master’s thesis, university of sussex. article information authors: chioma ohajunwa1 judith mckenzie1 theresa lorenzo1 affiliation: 1disability studies programme, department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa. correspondence to: judith mckenzie email: judith.mckenzie@uct.ac.za postal address: university of cape town, main road, observatory, 7925 cape town, south africa dates: received: 02 sep. 2014 accepted: 25 feb. 2015 published: 17 july 2015 how to cite this article: ohajunwa, c., mckenzie, j. & lorenzo, t., 2015, ‘enabling disability inclusive practices within the university of cape town curriculum: a case study’, african journal of disability 4(1), art. #157, 8 pages. http://dx.doi.org/10.4102/ajod.v4i1.157 copyright notice: © 2015. the authors. licensee: aosis openjournals. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. enabling disability inclusive practices within the university of cape town curriculum: a case study in this original research... open access • abstract • introduction    • current inclusion practices in higher education institutions • methodology    • study context    • sampling and inclusion criteria       • ethical clearance • findings • motivation for disability inclusion    • understanding of disability    • focus of inclusion    • teaching strategies • discussion    • implications • conclusion • acknowledgements    • competing interests    • authors’ contributions • references • footnote abstract top ↑ background: disability inclusion in the curricula of higher education institutions contributes to socially responsive graduates with a capacity to address the cross-cutting issue of disability in development. this article discusses a study conducted at the university of cape town (uct), south africa, to explore disability inclusion. methodology: an instrumental case study approach was adopted and a thematic analysis of data was done. findings: academic staff found a variety of ways to include disability, such as discussions in class, practice and service learning, but mainly as part of disciplinary requirements. including disability as an issue of social justice stems mostly from the personal interest of staff, and is done in an ad hoc manner. conclusion: disability should be valued, and integrated into the curriculum in a structured manner as a perspective on diversity with which to interrogate our beliefs about ourselves and society. theorising on disability is needed, as well as the unique perspectives that emerge across interdisciplinary boundaries, especially within the african context. introduction top ↑ ‘given the status of disability in our society, it may be that there needs to be larger recognition, or more formal recognition of that in the pedagogy’ (participant 2:1). this opening quote from one of the study participants shows that the relevance of including disability in the curriculum has not yet been given the recognition it deserves. there are a variety of ways of understanding disability, but the two predominant models are the individual model of disability, and the social model. the individual model focuses on individual deficit or impairment, and attributes any restriction of activity or social disadvantage that the individual confronts in his or her everyday life as the inevitable and tragic consequence of that impairment (hammell 2006). on the other hand, the social model (as proposed by the disability rights movement) posits that society creates barriers for any person with an impairment. these barriers include – but are not limited to – negative attitudes, and inaccessible environments, systems and structures. disability arises when a person with an impairment is excluded because of societal barriers (oliver 1996). the social model has been widely adopted, albeit in varying forms, and underpins the united nations convention on the rights of people with disabilities (uncrpd) (un 2006), a human rights instrument intended to ensure equal participation and representation of people with disabilities in their communities. the uncrpd has been widely ratified by member states. for the purposes of this study, we have adopted the definition of disability given by the uncrpd (un 2006), which views disability as an: evolving concept, that arises from the interaction between persons with long-term physical, intellectual and sensory impairments and attitudinal and environmental barriers that inhibit their full and effective participation in society on an equal basis with others. (un 2006:1) the extent to which the environment in which the individual with an impairment operates is enabling or disabling is of primary importance and is thus foregrounded within this definition, as opposed to an emphasis on the impairment itself. the un has made specific recommendations regarding changes toward disability inclusion that should be led by universities and higher education institutions (heis) (blumenthal & boelen 2001). article 8 of the uncrpd, on awareness-raising, requires state parties to: nurture receptiveness to the rights of persons with disabilities, and to promote positive perceptions and greater social awareness, fostering in all children and at all levels of education, the respect of people with disabilities. (uncrpd 2006:11) article 24 of the uncrpd, on education, strongly advocates the need to create awareness on disability issues in higher education, towards the support of lifelong learning for people with disabilities. there are a number of studies (getzel 2008; konur 2006; lynch & gussel 2001; murray et al. 2009; tagayuna et al. 2005; vogel et al. 1999) that focus on strategies within heis for the inclusion of people with disabilities and the various ways they may be included, but the focus of this study is the wider impact arising from the inclusion of disability as a concept in the curriculum. heis have a unique position and influence which can be used to create a more inclusive culture, and the curriculum is one of the vehicles by which this change can occur. for the purpose of this study, we adopted a broad understanding of ‘curriculum’, in three different ways. firstly, the intended curriculum is concerned with the intended or overarching curriculum frameworks supplied by the discipline or institution for guiding what is taught to learners. secondly, the enacted curriculum focuses on what is actually being taught in the educational institution; and thirdly, the life curriculum concerns meaningful classroom interaction (marsh 2009). all three aspects of the curriculum are often influenced by the personal beliefs and understanding of the teacher. chaney (2011) posits that the understanding one has of a concept impacts on ways of interacting with that concept; hence the relevance of exploring the understanding that lecturers have of disability inclusion in hei curricula. in this paper we begin by reviewing current international disability inclusion practices in heis; then, we discuss the methodology and study context, followed by the findings. based on the findings, we argue that disability needs to be more firmly entrenched in the intended curricula of heis. we conclude by discussing the study implications and possible ways forward with regard to disability inclusion in heis. current inclusion practices in higher education institutions there are various arguments for the inclusion of disability in the curricula of heis, which include knowledge production, training of professionals, and the interdisciplinary nature of disability studies. in terms of knowledge production, there is increasing recognition that the role of heis is not only to provide access for students with disabilities, but also to build knowledge of disability into all academic spheres, and to produce graduates who are able to understand and deal with disability issues in their professional lives. barnes (2007) advocates a change in knowledge production in higher education, so that disability becomes a cross-cutting issue that can influence the generation of new knowledge. this new knowledge occurs by disability opening up our thinking and helping us make sense of our existence and identities, identifying preferences and unconscious prejudices (paetzold 2010). white (2004) states that disability inclusion in the curriculum generates new insights in teachers and students alike. engaging with disability issues gives us a better understanding of ourselves, and helps us to interpret the experiences we have as human beings; disability studies helps society interrogate and understand who they are (derby 2011). the positioning of people with disabilities as ‘needing help’ has often been reinforced by societal perceptions, and impacts on how professionals are trained regarding disability. transformation only occurs when default, long-standing beliefs are challenged (chen 2014), and this needs to be considered in professional training. people with disabilities face major socio-political barriers, and some disability scholars advocate that one cannot engage with disability without considering history, gender and context, among other issues (knoll 2009; mawyer 2007). learning about the context of policy implementation might address this need, and help transform service delivery for people with disabilities. faculty staff and graduates who have undergone some disability training are more likely to provide reasonable accommodation for students with disabilities (murray et al. 2009). an important element of this disability training would be to recognise that issues of disability cut across disciplines, and are not confined to the health and welfare professions. multidisciplinary inclusion draws on knowledge from different disciplines, but stays within their boundaries. the interdisciplinarity approach analyses, synthesises and harmonises links between disciplines into a coordinated and coherent whole. transdisciplinarity integrates the natural, social and health sciences in a humanities context, and transcends their traditional boundaries. the objective of multiple disciplinary approaches is to resolve real-world or complex problems, to provide different perspectives on problems, to create comprehensive research questions, to develop consensus on clinical definitions and guidelines, and to provide comprehensive health services. multiple-disciplinary teamwork has both benefits and drawbacks (choi & pak 2006). the notion of an interdisciplinary disability studies would integrate the contributions of various disciplines to a problem, issue or theme related to disability. various researchers would also work together to transfer knowledge related to disability between disciplines, while retaining their discipline-specific methods (rebbeck, paskett & sellers 2010). the transdisciplinary approach is the most complex level of integrated study, but often contributes to societal change (derby 2011; meeth 1978, cited in rebbeck et al. 2010). however, although this study advocates a transdisciplinary approach as the ideal, it also aims at fostering space for an interdisciplinary approach to disability inclusion. this interdisciplinary approach would include disability as an issue of social justice and diversity, and would invite various understandings of disability as linked to all disciplines of knowledge. this meaning-making across all disciplines would greatly enhance the inclusion of disability in the curriculum. disability has been successfully included in the humanities and the built environment curricula in some heis (danso, owusu-ansah & alorwu, 2012; derby 2011; kanter 2011). the fact that disability is included in various disciplines indicates that full knowledge on disability does not reside within one discipline only (campbell 2009; gabel 2010). heis are beginning to include disability issues in their teaching and research, employing various methods and strategies of inclusion (strauss & sales 2010). previously, the response of heis to disability was directed largely towards increased access for disabled students. the effect of disability training on faculty attitudes has been identified by various studies as important (getzel 2008; konur 2006; mayat & amosun 2010; murray et al. 2009; vogel et al. 1999). for example, a study done in the faculty of engineering and the built environment at the university of cape town (uct) showed that faculty staff are willing to accommodate disabled students, but struggle with their limited knowledge relating to the accommodation of disabled students, as the lecturers themselves had received no prior disability-related training within their own discipline (mayat & amosun 2010). this illustrates the need to begin to give time and space in current hei curricula to include disability in a more structured manner, so that the knowledge base of lecturers can be expanded to facilitate inclusion. there are some examples of heis that already include disability in their curricula. the university of new south wales in sydney has a disability-inclusive theoretical and philosophical framework as part of their social work undergraduate curriculum (meekosha & dowse 2007). in the field of education, it is advocated that teachers be critical of their reactions to disability, and be aware of any internal prejudices they may have about disability (ware 2008). disability is included in the art curriculum of the university of kansas, for the purpose of understanding and transforming issues of oppression (derby 2011). a range of strategies has been used for disability inclusion. practice/service learning or experiential learning sessions were identified as the most prevalent method of disability inclusion (campbell 2009). in this strategy, students are exposed to diverse social contexts, where they work and interact with people with disabilities in a bid to understand the lived experience of those people. this particular strategy has been criticised as inadequate; because the focus is on experiential learning, students often do not gain the knowledge of various theoretical concepts related to disability. the challenge of addressing theoretical aspects of disability inclusion could be attributed to a lack of time available in the curriculum for this purpose (silver, bourke, & strehorn 1998). it is hoped that the inclusion of disability in curricula would ensure that students are equipped to gain knowledge of the complexities of this global issue. inadequate preparation of hei graduates – future leaders, who will contribute to and work with people with disabilities – results in great injustice. this study therefore aimed to explore the understanding and practice of academics across a range of disciplines with regard to disability inclusion in curricula across all faculties at uct. methodology top ↑ a qualitative instrumental case study approach was adopted. academic staff from all six faculties at the university were interviewed. in-depth, face-to-face interviews guided by prompts were conducted, providing a rich source of data (silverman 2001:114). the interview guide was developed from the research team's knowledge and experience of the research area unstructured discussions with people who have personal experience of the research area, and a review of the literature (cassell & symon 1994). study context as an hei, uct has various policy frameworks that guide procedures, structures, and the implementation of programmes and services. a number of these policies are aimed at creating a more inclusive institutional culture that will enhance diversity and tolerance of difference in the university. the vic chancellor developed six strategic goals as part of the strategic plan to develop uct (2009) in particular ways over 2010–2014. the two strategic goals of expanding and enhancing uct's contribution to south africa's development challenges and enhancing the quality and profile of uct's graduates were selected as the focus of the study, due to their relevance to the issue of disability inclusion in teaching, learning and research across all disciplines. uct's governance structures, which include the transformation office, drive these policies, and faculties are held accountable for ensuring that social responsiveness is included in their portfolios (uct 2012). uct has approximately 26 000 students across the six faculties, the centre for higher education development (ched) and the graduate school of business (gsb). the six faculties are engineering and the built environment, health sciences, humanities, sciences, law, and commerce; they have approximately 60 departments between them, including associate departments and programmes. the disability services unit provides support and reasonable accommodation to disabled staff and students, to assist their functional capacity at the university. the disability studies programme (dsp) in the department of health and rehabilitation sciences (faculty of health sciences) is the academic programme that housed this study. sampling and inclusion criteria ethical clearance academic staff who include disability in teaching were interviewed, identified through a questionnaire circulated to all the faculties. after the interviews, some participants identified other staff who include disability in teaching. the researcher then contacted and interviewed these additional staff members. a total of 42 academic staff from all six faculties participated in the study. data was gathered using in-depth, face-to-face interviews, using an interview guide. each interview lasted approximately an hour. interview transcripts were transcribed verbatim; then, each transcript was read repeatedly to gain familiarity with the data. a thematic analysis was done to identify themes that emerged relating to disability inclusion. participants gave their informed consent for the interview, and agreed to being audiotaped. ethical approval for the study was received from the faculty of health sciences human research ethics committee, with approval number hrec ref: 653/2012. findings top ↑ four themes emerged, and will be expanded on: motivation for disability inclusion understanding of disability focus of inclusion teaching strategies. motivation for disability inclusion top ↑ the theme of motivation for disability inclusion relates to the reasons that participants gave for disability inclusion. ‘disciplinary requirement’ refers to the intended curriculum, as given by the discipline or department; ‘influence of a colleague’ refers to participants who were influenced by colleagues; while ‘personal interest’ refers to participants who included disability because of their own interest. it was revealed that participants include disability mainly because it is part of their disciplinary requirement (table 1). table 1: motivation for disability inclusion. the dominant motivation for disability inclusion in the curricula of the faculties of health sciences, science, commerce and law relates mainly to disciplinary requirements, followed by the personal interest of the lecturer. ‘my personal approach is inclusion, enablement, the social model. however, the department takes a medical approach; so disability issues do not come in as a formally integrated aspect of the teaching, but individuals bring that aspect in.’ (participant 1:8) in the faculty of health sciences, the priority is to fulfil the curriculum requirements for teaching of the health professional council of south africa board. this results in a greater focus on impairment, if the social justice perspective is not originally part of the departmental curriculum. some departments include disability only if related to a topic under ad hoc discussion. responses from the faculties of law and commerce showed that disability is included when any legislation or policy considered in class discussions is linked to disability. ‘in fact, disability is used as an example of what we call a collective right, rather than a corporate right; but it's not the main focus. it's merely an example.’ (participant 4:2) the faculty of sciences included disability in terms of using technology to enhance the quality of life of people with disabilities. in the faculty of humanities, ‘personal interest’ was the dominant motivation for including disability. understanding of disability the second theme describes the ‘lenses’ through which participants view disability. although the influence of both the individual and the social models of disability could be seen across most faculties, the individual model was the most predominant in understanding disability (table 2). ‘disability in architectural terms is mainly around universal access. that's the first, primary concern, because access is being able to get to all parts of the building’ (participant 2:1). table 2: understanding of disability. the faculty of law focused on mental impairment and how this impacts on an individual during a judicial process, while the faculty of humanities focused almost solely on a social model of disability, including the socio-cultural causes, resources and impacts of disability. this focus can be attributed to the predominant viewpoint that although one may have an impairment, socio-cultural and familial context has more of an impact on how the individual experiences the disability. ‘disability is contextual and cultural and familial and personal. so it… so somebody with a perceived disability could have been raised in a family where it was not perceived as a disability; and experience, you know, great opportunities and conditions for possibility.’ (participant 3:1) although the faculty of engineering and the built environment recorded the use of both the social and the individual model of disability, statements from that faculty indicate that the extent of inclusion needs to be reviewed. ‘given the status of disability in our society, it may be that there needs to be larger recognition, or more formal recognition, of that in the pedagogy’ (participant 2:1) in the faculty of health sciences, the department of health and rehabilitation sciences offers a curriculum rich in disability content. the divisions of disability studies, occupational therapy, communication and speech disorders, physiotherapy and nursing provide a wider understanding of disability as a human rights issue, using both the individual and social models of disability, and the biopsychosocial and developmental approach. focus of inclusion the third theme addresses curriculum content taught to students, with the focus ranging from impairment, to disability as an issue of diversity (as with gender and race), to human rights, to involving students in discussions on the theoretical and policy contexts of disability. impairment, human and socio-political rights, and issues of access were the main areas of teaching focus related to disability across all faculties (table 3). table 3: focus of inclusion. the faculty of health sciences focuses mainly on the preventive, curative and rehabilitative aspects of impairment. in the department of health and rehabilitation sciences, disability concepts are taught at undergraduate level as well as at postgraduate level, where students are also encouraged to produce full dissertations on disability-related issues. opportunities are created to encourage experiential learning about disability. ‘some of the programmes actually have community placements, where they can actually see – what rehabilitation is required, how the communities adapts, how the families adapt… students follow families through from the icu to the wards, and then three family visits. they not only access how the patient is doing, but how the family is coping.’ (participant 1:12) in the faculty of humanities, students from the social development department are encouraged to explore how the position of a breadwinner in the family can be changed by disability, and the resultant mental strain to that individual. at the postgraduate level there is a focus on disability as a development issue; various policies on social development relating to disability are explored, and presentations are made by students: ‘whoever was interested in the topic of disability and development worked then in that one small group, with many other small groups on different other aspects, and then would read up about the latest legislation and (international, down to local) policy, and ngos, and put across the challenges to integrating disability into development.’ (participant 3:2) in the faculty of engineering and the built environment, disability is included in terms of compliance with legislature and issues of physical access, so there is a lot of focus on physical disability and how structures can accommodate ‘difference’: ‘the main area is design, and – in a sense – configuring space for human activity. so it's integrated, in the way [that] sustainability or structure, or all of these things, get assimilated.’ (participant 2:1) teaching strategies the different ways that lecturers choose to teach issues of disability to their students, and how disability is presented, emerged as the fourth theme. out of all the various strategies employed to include disability in the curricula in all six faculties, discussion or workshop was the most utilised strategy, followed by disability as part of a classroom lecture – people with disabilities were also invited to lecture (see table 4 for other strategies). a participant from the faculty of commerce shared that he asks students to look around the classroom and identify possible barriers to participation for students with disabilities in the class, to generate discussion on disability. table 4: teaching strategies. in the department of dance (faculty of humanities), various journal articles and readings on disability are provided to showcase current disability debates at the postgraduate level. a participant from the department of education simulates an inclusive classroom with students; and diversity studies1 invite people with disabilities to present seminars and workshops to their students. the african gender institute (agi) introduces disability in the classroom through a movie, a lecture, and tutorial discussions. ‘what i must point out is this: that in our tutorial sessions which we have apart from the lectures, students get an opportunity to actually flesh these things out. because obviously, in a class of – what, 250? 260? – not everybody‘s going to feel brave enough to say how they feel. so what we tend to do is, for our tutorials, there’re probably about fifteen to eighteen in a group.’ (participant 3:4) however, the most employed strategies are practice or experiential learning, and classroom discussions. the transport division of the faculty of engineering and the built environment has recorded very good student outcomes from using experiential learning: ‘because they all go out with instruments to measure grades, they use the wheelchairs to look at ramp gradients, turning circles, the height of buttons to push on lifts, and all of that kind of thing. so it's an enormously powerful exercise. and the type of thing that they write in the course of evaluations is: ‘this was a mind blowing experience, this has changed my perception of the world.’ (participant 2:4) in the faculty of health sciences, the division of nursing and clinical skills unit employs practice learning and community engagement as approaches for including disability in their curriculum; similarly to the department of health and rehabilitation sciences and the department of psychiatry, where the case study approach is used. although the major focus is on impairment and the burden of disease, students begin to interrogate their own reactions to disability and grapple with environmental, socioeconomic and personal factors that create a disabling context for an individual with an impairment: ‘we look at the home, social and occupational environment. we take the students out to practise good psychiatric examination. we use the biopsychosocial model. we teach them how to adjust the environment to help the patient to be functional.’ (participant 1:18) the notion of building a more inclusive society is also promoted. the responses from the division of information systems (faculty of commerce) suggest that often inventions made for people with disabilities benefit society as a whole: ‘the [computer] mouse, which we all use today, was initially designed for people who couldn’t use a keyboard – in other words, who were disabled – and now everybody uses it.’ (participant 5:1) emphasising the need to interrogate our understanding of disability, the following section discusses the study findings related to factors that influence disability inclusion in hei curricula. discussion top ↑ the understanding of disability and the focus on and strategy of inclusion have mostly been influenced by personal interest and disciplinary requirements. these two factors are the main motivations for disability inclusion at uct among academics who participated in the study. in other words, the extent and manner of disability inclusion is determined by the level of interest the lecturers have in disability. ramsden (2003) notes that teaching is often influenced by the lecturer's belief system and the values they bring to the teaching and learning experience. many factors go into being a lecturer, including the ability to critically examine and deconstruct the different ‘selves’ that lecturers are in the teaching space (ruth 2014). toohey (1999) refers to these as ‘curriculum ideologies’ – the ideologies that influence the curriculum come out of our personal beliefs and experiences, as well as our understanding of the discipline we are in. so there needs to be critical reflection on the disciplinary frameworks used to understand disability, as this has implications for disability inclusion. the large amount of content to be covered in the curriculum (and the need to fulfil disciplinary obligations, in the faculties of health sciences, engineering and the built environment, law, and commerce) means that often, the focus is on the impairment. the societal and attitudinal causes of disability receive less attention, and are often included only if there is a link to the ongoing classroom discussion. we found that disability is more readily located in the enacted and life curricula, where lecturers with a specific personal interest in the topic include disability in their day-to-day teaching and classroom engagement. disability should be included in the intended curricula of the various departments as a transdisciplinary issue for effective integration, like other issues of diversity such as race, gender, age and socioeconomic status. during the interviews, participants were asked to indicate whether they teach on other issues of diversity. many of them responded that besides disability, they include at least one issue of diversity as an aspect of their intended curriculum and teaching – though smith et al. (2011) found that disability is often not included in the same structured manner as other diversity issues. one reason for this minimal or inadequate inclusion could be that disability is often seen as a medical or impairment issue (lellis 2011), as was the case, in this study, in the faculties of health sciences and engineering and the built environment. disability is not always perceived to be an important part of knowledge acquisition or knowledge construction for students in these disciplines, or in other disciplines. this understanding of disability can result in the ‘invisibility’ of disability (erevelles 2011). the findings indicate that there is a need for a framework within the institutional culture and overarching curriculum structure that makes obvious the relevance of disability to shaping our thinking as a society. inclusion is a complicated process at best, and requires institutions and curricula to create a structure and a system that allow for a culture and practice in which all barriers and opposition to participation may be identified and removed (tressou, mitakidou & karagianni 2007). giving academic staff sufficient support to include disability is critically important. where disability is devalued and kept out of the intended curriculum, such support is less likely to occur. the relative absence of disability inclusion in the curriculum reflects that its relevance is not valued. toohey (1999) identifies certain factors that influence curriculum content and the value placed on that content. some of the factors are: our view of the knowledge, the learning process, learning goals, choosing and organising content, and the resources available, including time allocation. the time allocated in the curriculum and the time spent in preparation and availability to students are identified as the major determinants of learning. not enough time is given to preparation and teaching on disability in the curriculum, as evidenced by the ad hoc inclusions mentioned by many respondents. this practice indirectly reflects the value placed on disability inclusion. where disability inclusion does happen, staff often give first priority to their disciplinary requirements; which might lean more towards impairment than to the social discourses of disability. there is a need to create a space within the intended curriculum that explores the socio-cultural aspect of disability in teaching and learning. this learning would support a variety of issues, debates and voices that reveal to students the knowledge community of disability and its discourses, participants and values (northedge 2003). when no time is planned for structured and detailed interaction, and disability is included in an ad hoc manner, this learning and influence may be undermined. including disability in the curriculum discourse would help lecturers, students and researchers to rethink what they consider to be standards of normalcy in society, and to challenge and critique curriculum development and theory. making disability visible would contribute to creating role models that could show a more positive aspect of disability. showcasing the positive aspects of disability was a relevant part of inclusion identified by respondents. life curricula occur when the lecturer or facilitator is in class with students, engaging with and discussing the subject matter or topic of the course or module. so this ongoing engagement that occurs during life curricula is a very good space for ‘opening students up’ to the ‘humanness’ of disability. in fulfilling the life curriculum, diversity studies, dance, information systems and transport invite people with disabilities to their classes, not only to create awareness and showcase role models, but to enrich the curriculum with critical discussions and debates regarding disability. as the curriculum is the centre of teaching and learning in heis, departments and academics need time to deliver well-planned courses for effective teaching that encourages student learning (ramsden 2003) and may influence societal change. the inclusion of disability beyond the enacted and life curriculum into the intended curriculum is necessary to create an enabling and supportive environment in heis where diversity in the curriculum is encouraged. implications there is a need to create learning spaces where diversity is valued, which can also contribute to the building of an inclusive space for all learners. however, factors such as the physical learning environment, the core requirements of the curriculum or discipline, the teacher's knowledge and personal experiences, and prevailing cultural and systemic support are some of the factors that influence the teaching and learning space (toohey 1999). when disability is included in an ad hoc manner, students may be left with the impression that disability is not an important or relevant issue for inclusion in their future professional practice and careers. for excellence to prevail, this shortcoming should be addressed as a matter of urgency. time allocation in teaching and learning is important, and disability should be allocated a time and space within the curriculum, across disciplines, along with other issues of diversity. heis continue to be the main source of knowledge production and distribution (atuahene 2011), and with the interdisciplinary nature of disability studies, great strides could be taken towards creating a more inclusive society, as all would be made aware, at an early stage, of the need to do so. conclusion top ↑ this study has revealed that there is growing interest from academic staff in including disability; but an overcrowded curriculum has presented challenges to such inclusion in teaching and research. the sense of commitment from the staff who strive to include disability in their own way is commendable. this commitment is an indicator of the necessity to further explore ways and means of providing institutional support for disability inclusion. if students do not encounter disability debates and interrogate notions of difference, normalcy and disability inclusion while in undergraduate studies, they may never have another opportunity to do so. it is probable that many students will encounter disability; but it is how the students work with the theory and practice that will change the framework of thinking to impact society positively. the disability studies division is a resource that is well positioned to foster the drive for interdisciplinary, innovative, disability-related teaching and research in africa. this drive contributes to curriculum transformation and supports lecturers with current debates, voices and participatory means of influencing pedagogy regarding disability inclusion across disciplines. acknowledgements top ↑ competing interests the authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article. authors’ contributions c.o. 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‘urban educators, disability studies and education: excavations in schools and society’, international journal of inclusive education 12(5/6), 563–583. http://dx.doi.org/10.1080/13603110802377615 white, b.a., 2004, ‘disability studies: enabling the humanities’, sign language studies 4(2). http://dx.doi.org/10.1353/sls.2004.0007 footnote top ↑ 1. at the time of writing, the diversity studies programme (faculty of humanities) is no longer offered at the university of cape town. abstract introduction research methods and design results discussion conclusion acknowledgements references about the author(s) katleho limakatso department of anaesthesia and perioperative medicine, faculty of health sciences, university of cape town, cape town, south africa jenna tucker department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa lennie banda department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa cheyne robertson department of health and rehabilitation sciences, faculty of health sciences, university of cape town, cape town, south africa romy parker department of anaesthesia and perioperative medicine, faculty of health sciences, university of cape town, cape town, south africa citation limakatso, k., tucker, j., banda, l., robertson, c. & parker, r., 2024, ‘the profile of people undergoing lower limb amputations at groote schuur hospital’, african journal of disability 13(0), a1152. https://doi.org/10.4102/ajod.v13i0.1152 original research the profile of people undergoing lower limb amputations at groote schuur hospital katleho limakatso, jenna tucker, lennie banda, cheyne robertson, romy parker received: 05 oct. 2022; accepted: 23 oct. 2023; published: 14 feb. 2024 copyright: © 2024. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: the annual incidence of lower limb amputations (lla) at groote schuur hospital is rising gradually. however, little is known about the sociodemographic and clinical profiles of people undergoing these limb amputations. objectives: to collect and analyse data to describe the sociodemographic, health and amputation profiles of people who have undergone lla at groote schuur hospital. method: a descriptive retrospective chart review was conducted using a sample of 107 participants who had undergone lla at groote schuur hospital between january 2019 and july 2020. a customised assessment tool was used to extract data on the sociodemographic, health and amputation profiles of patients who had lla. data were analysed descriptively. results: sixty per cent of the patients who had undergone lla at groote schuur hospital were women. most of the patients were over the age of 60 years and had not completed school and were pensioners or unemployed, with very low income and multiple co-morbidities including poorly controlled diabetes. conclusions: complications because of uncontrolled diabetes were the primary indication for llas at groote schuur hospital. therefore, health literacy projects are indicated to address chronic diseases of lifestyle, which, in turn, may reduce the overall burden of lla, particularly on the south african under-resourced healthcare system. contribution: the results of this study may help us identify key factors that predispose patients to llas. consequently, this may help us identify key areas for prevention and better management of diseases that can result in complications that indicate the need for amputation. keywords: amputation; characteristics; risk factors; hospital; western cape. introduction amputation is defined as the removal or loss of a body part or limb. approximately 356 million limb amputations are conducted globally every year (moxey et al. 2011). of these, roughly 90% are linked to diabetes (moxey et al. 2010; tiwari et al. 2012). although limb amputations are performed for several reasons including cultural practices, they are chiefly performed after severe trauma, disease or congenital complications (khan et al. 2020). it is estimated that approximately 1200 lower limb amputations (llas) are conducted annually because of diabetic complications in the western cape province of south africa, with people experiencing various challenges post-operatively (dunbar et al. 2015). a limb amputation is associated with functional disability and psychological distress (fuchs, flor & bekrater-bodmann 2018; ennion & yu 2019). people with amputation often suffer from depression and anxiety and experience problems with ambulation (padovani et al. 2015). in consideration of this, it is unsurprising that people with amputations have a poor health-related quality of life and are at a higher risk of being disabled and unemployed (tutak et al. 2020). although severe medical conditions may be remedied by undergoing an amputation, further amputation-related problems can persist beyond the period of hospitalisation (ciufo et al. 2019). for example, a recent study revealed a high prevalence of depression and anxiety in african people with limb amputations (faraj, mutavi & gitau 2022; roșca et al. 2021). in addition, a systematic review evaluating the effects of amputations found significant activity limitations and participation restrictions in people with amputations (behera & dash 2021). these findings are consistent with those of a south africa-based study that identified care priorities for people with llas following hospital discharge (limakatso 2022). in the early stage after amputation, the participants expressed the need for help with their mental health and psychological and spiritual well-being. in the long-term, however, the participants prioritised the need for living a functional and normal life, with respect and dignity like everyone else. these care priorities are context-specific and may vary from those of people with upper limb amputations. therefore, understanding the context and characteristics of patients with amputations is essential for providing patient-centred care. currently, the sociodemographic and clinical profile of people undergoing lower limb amputations at groote schuur hospital is not well understood. considering the rising incidence of amputations in south africa, understanding the profile of people accessing the healthcare system for limb amputations has the potential to enhance care and recovery (manickum et al. 2019). global studies have shown that being male, over 45 years of age, having multiple co-morbidities (e.g. diabetes) or a low level of health literacy are all independently associated with an increased risk of having amputation surgery (lin et al. 2020). exploring these variables in the south african population may help us identify key factors that make patients vulnerable to needing llas. consequently, this may help us identify key areas for prevention and better management in people with conditions in which complications may indicate the need for amputation. to this end, we conducted this study with the aim of describing the sociodemographic, health and amputation profiles of people who have undergone llas at groote schuur hospital. research methods and design study design a descriptive retrospective cross-sectional chart review was conducted. this study design is time-efficient, cost effective and scaled, with resources devoted mostly to data collection (vassar & matthew 2013). research setting the study was conducted at groote schuur hospital – a tertiary-level healthcare institution in cape town, south africa. groote schuur hospital is a government-funded institution providing amputation services to people within and out of the cape town metropolitan area. population the population of interest is people with acquired limb amputations. the sampling frame is adults (≥18 years) who have undergone surgical or traumatic upper or lower limb amputations at groote schuur hospital. sample size determination the required sample size was calculated using the yamane formula (yamane 1967) where n is the study population, and e is the constant. using a population of 167 (number of amputations at gsh per annum) and a constant of 0.05 for a 95% confidence interval, 118 participants were required. procedure three researchers (jt, lb and cr) retrieved the names of people who had undergone limb amputations from a pre-existing and hrec-approved database held in the acute care surgical unit of groote schuur hospital (acute care surgery online database: hrec 020/2018. valid until 30 september 2021). this registry included patients who had undergone limb amputations and provided consent to be contacted or have their data used for research purposes. the researchers randomly selected 20 names from the registry at a time and accessed the relevant folders from the groote schuur hospital records department in tranches of 20 folders at a time until the patient list was exhausted, or the desired sample size was attained. the researchers extracted relevant information and entered it into the microsoft excel spreadsheet tool. once data were captured, the folders were returned to the records department. outcome measure a pre-piloted customised data extraction tool was used to collect data on the sociodemographic and clinical profile of patients who had undergone amputation surgery at groote schuur hospital between 2019 and 2020: demographic, health and amputation-related characteristics. statistical analysis data were analysed using non-parametric statistics because numerical data were not normally distributed. the results are therefore reported as a median with an interquartile range (iqr). the remaining data were analysed descriptively. ethical considerations ethical approval to conduct this study was sought and obtained from the university of cape town, faculty of health sciences, human research ethics committee (hrec) [ref:164/2021]. the study was conducted in accordance with the ethical principles for conducting research in humans as delineated in the declaration of helsinki (cantín 2014). all patients who underwent amputation surgery and were included in this study had signed informed consent for their data to be entered into the registry. while the methodology of chart review is regarded as low risk, there remains a risk of breaking patient confidentiality. to reduce this risk, all data were de-identified at the point of collection. in addition, precautions for non-maleficence included logging patient folders in and out of patient records to prevent loss of information that may be needed for future treatment. finally, the ethical principle of beneficence was addressed through presentation of these results to staff and students at the hospital and through this publication to increase knowledge about the profile of people who undergo amputation in this setting. results one hundred and eighty-seven people who had limb amputation between january 2019 and july 2020 were identified from the registry. the folders of 107 people were retrieved. other patient files could not be found. sociodemographic characteristics the sociodemographic characteristics are presented in table 1. the study included 107 participants (male [n = 50]; female [n = 57]) with a median [iqr] age of 61 [57–86]. most participants were pensioners (47.66%) and had not completed school (n = 86; 80.34%), and only one lived outside the city of cape town. over 52% of the participants earned <zar1690 per month, meaning their treatment was fully subsidised. table 1: sociodemographic characteristics (n = 107). health characteristics the participants presented with a variety of co-morbidities (table 2). the most prevalent of these were diabetes mellitus type ii (80.25%) and hypertension (69.14%). most participants presented with more than one comorbidity. roughly 55% of the participants had a current smoking history (table 3), with 72.42% of these having a pack year history of more than 10 years. table 2: co-morbidities of the patients. table 3: history of smoking. amputation-related information the most common indications for amputation were diabetic complications and peripheral vascular diseases, with trauma and malignancy being the least (table 4). all participants had lower limb amputations, with most having amputations above the knee (52.34%) (table 5). only one participant had a double-limb amputation. the participants had a median hospital stay of 8 days (5–13) post-amputation. however, one participant had a longer hospital stay of 35 days. post-operative complications were recorded in 19 participants, with sepsis (23.4%) being the most common complication. other complications were delirium (2.47%), hematoma (1.23%) and renal failure (1.23%). a surgical revision was conducted on one participant. table 4: indications for amputation. table 5: types and levels of amputation performed. discussion the aim of this study was to describe the characteristics of patients who had undergone limb amputations at groote schuur hospital during the years 2019 and 2020. the results of our study revealed that patients who presented at groote schuur hospital for a lla were generally women, over the age of 60 years, who had not completed school, and were a pensioner or not employed, with very low income and multiple co-morbidities. the participants in this study had various co-morbidities with diabetes and hypertension the most prevalent. the patient profile in this study is consistent with that reported in a large south african study (n = 348) conducted at grey’s hospital. in that study, participants presented with co-morbidities including pre-existing cardiac disease, vascular disease, diabetes mellitus and hypertension (khan et al. 2020). interestingly, the most common indication for lla in that study was also uncontrolled diabetes mellitus. similarly, another retrospective review conducted in a western cape teaching hospital revealed that llas were commonly conducted on elderly females as a consequence of diabetic foot gangrene (hagan et al. 2018). in contrast, a recent systematic review of studies investigating gender differences in diabetic-related amputations found that men were more likely to undergo amputations than women (fan & wu 2021). our results could be an artefact of various barriers to access to specialised care, which affect women more than men in south africa (khan et al. 2020; mutyambizi et al. 2019). perhaps, the greater representation of women in the present and previous south african studies reflects a disempowered state of women in several areas in south africa. the disempowerment of women in south africa is a common barrier for women wanting to seek primary healthcare. a previous south african-based study indicated that gender-based violence was a barrier in such a way that women were afraid to use chronic medication (e.g. for diabetes) out of fear of being stigmatised and abused by their partner (mbali & mthembu 2012). in addition, the study indicated gender roles as another important barrier, in that men, particularly in rural areas, are decision-makers and tend to dictate when women should seek and utilise healthcare. similar findings are reported in a study conducted elsewhere in africa (azad et al. 2020). the barriers to accessing care faced by women suggest they are not receiving timely and effective care, thus increasing their likelihood of undergoing an amputation surgery to address complications resulting from uncontrolled diabetes conditions. in addition, the predominance of above-knee amputations and the data that one in five of the sample suffered from postoperative sepsis suggest that patients were presenting to hospital late in the progression of their disease. this highlights the need for programmes educating women and men about the importance of timely health care in managing diabetes and preventing associated amputations. our findings indicate that most participants who had undergone llas were pensioners and not involved in remunerative work. the current evidence indicates that people living in low-income areas have higher rates of llas than those living in affluent areas (stevens et al. 2014). low-income communities mostly comprise older people (>60 years) with multiple co-morbidities, which are often poorly managed (abebe et al. 2020). in our sample, low literacy levels, common in low-income areas, may have compounded vulnerability (raghupathi & raghupathi 2020). over 80% of the sample had not completed school, suggesting associated low levels of health literacy. indeed, over half the sample smoked and had multiple comorbidities, suggesting a lack of insight into one’s condition, how to live a healthy lifestyle, eat a suitable diet and a lack of knowledge regarding how and when to access healthcare (bayati et al. 2018). there appears to be a need to target the poor quality of healthcare services in low socio-economic areas (gordon, booysen & mbonigaba 2020) including offering education and empowerment programmes to improve health literacy. poverty and its associated consequences may predispose people to a higher risk of amputation. broad-based efforts should be made by the government and relevant stakeholders to combat poverty and improve levels of health literacy in low-income households to reduce the burden of poverty-related amputations and debilitating consequences. llas are associated with physical impairment that has major mobility and psychological implications on an individual (roșca et al. 2021). more specifically, above-knee amputations are associated with higher morbidity (myers & chauvin 2023), poor rehabilitation outcomes (crane et al. 2021), and higher mortality (hançerli & doğan 2023) when compared with below-knee amputations. given that over 50% of the participants in this study had above-knee amputations, it is plausible to infer that some may have challenges with returning to their highest level of function. in fact, in a recent qualitative study, participants with llas expressed the need to live a functional life with dignity like everyone else (limakatso 2022). they indicated that free movement and reduced barriers to access are important in facilitating improved functional independence and participation that is necessary for living a dignified and purposeful life. these findings indicate that undergoing lla is a major life event with severe implications immediately post-amputation and in the long term. in consideration of this, it is imperative to implement pre-amputation education programmes designed to improve physical and psychological outcomes. this study sheds some light on the sociodemographic and clinical profile of people undergoing llas at groote schuur hospital. however, there are some limitations. in-depth information was not recorded in patient folders, limiting the range of data that could be extracted for this study. therefore, some recommendations are based on relevant data reported elsewhere. in addition, several patient folders could not be found. therefore, the study was underpowered because of a small sample size. in consideration of this, we conducted a post-hoc power analysis which showed 90% confidence in the results. while the results need to be interpreted with caution because of the sample size, our study does have important clinical implications and offers useful recommendations for improvement in healthcare. recommendations uncontrolled diabetes was the primary indication for amputations at groote schuur hospital. therefore, we recommend that the early screening of comorbidities including diabetes be conducted to identify people who are at a high risk of undergoing an amputation and initiate timely treatment to prevent complications. in addition, health literacy projects focusing on healthy diet, adherence to medication and importance of staying active are recommended for preventing the complications arising from chronic diseases of lifestyle. not only do health literacy projects have the potential to improve the patient’s quality of life, but they can also contribute towards reducing the burden of amputations and associated complications including depression, anxiety, loss of employment and disability. conclusion this study revealed that elderly people, most of whom are female, undergo amputations because of diabetic-related complications. these results are essential for informing healthcare professionals and patients about the risk factors for amputation, to use them as targets for prevention and management. identifying these factors will enable healthcare professionals to identify patients who are at high risk of undergoing an amputation and prone to developing further complications as a result. this will enable healthcare providers to optimise healthcare and improve clinical outcomes of patients with limb amputations. acknowledgements competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions the contribution of the authors for this publication is as follows: k.l. and r.p. conceptualised the study. l.b., c.r. and j.t. prepared the study protocol for ethical clearance and collected data. l.b., c.r. and j.t. conducted the formal analysis of the data with the input from k.l. and r.p. k.l. wrote the original draft of the manuscript. all the authors reviewed and edited the manuscript and approved the publication of the final version of the manuscript. funding information this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. data availability all de-identified data will be made 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numune medical journal, 60(2), 168–172. https://doi.org/10.14744/hnhj.2020.27928 vassar, m. & matthew, h., 2013, ‘the retrospective chart review: important methodological considerations’, journal of educational evaluation for health professions 10, 12–10. https://doi.org/10.3352/jeehp.2013.10.12 yamane, t., 1967, problems to accompany ‘statistics, an introductory analysis’, harper & row, new york. abstract background aim method results discussion practical implications implications for research limitations conclusion acknowledgements references footnotes about the author(s) charlotte capri department of psychiatry and mental health, university of cape town, south africa alexandra hospital, western cape government, south africa lameze abrahams department of psychiatry and mental health, university of cape town, south africa lentegeur psychiatric hospital, department of health, south africa judith mckenzie department of health & rehabilitation sciences, university of cape town, south africa ockert coetzee department of psychiatry and mental health, university of cape town, south africa alexandra hospital, western cape government, south africa siyabulela mkabile department of psychiatry and mental health, university of cape town, south africa lentegeur psychiatric hospital, department of health, south africa manuel saptouw lentegeur psychiatric hospital, department of health, south africa andrew hooper lentegeur psychiatric hospital, department of health, south africa peter smith department of psychiatry and mental health, university of cape town, south africa lentegeur psychiatric hospital, department of health, south africa colleen adnams department of psychiatry and mental health, university of cape town, south africa leslie swartz department of psychology, stellenbosch university, south africa citation capri, c., abrahams, l., mckenzie, j., et al., 2018, ‘intellectual disability rights and inclusive citizenship in south africa: what can a scoping review tell us?’, african journal of disability 7(0), a396. https://doi.org/10.4102/ajod.v7i0.396 review article intellectual disability rights and inclusive citizenship in south africa: what can a scoping review tell us? charlotte capri, lameze abrahams, judith mckenzie, ockert coetzee, siyabulela mkabile, manuel saptouw, andrew hooper, peter smith, colleen adnams, leslie swartz received: 30 may 2017; accepted: 05 dec. 2017; published: 25 apr. 2018 copyright: © 2018. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: intellectual disability (id) is the most prevalent disability in the world. people with intellectual disability (pwid) frequently experience extreme violations of numerous human rights. despite greater prevalence in south africa than in high-income countries, most id research currently comes from the global north. this leaves us with few contextually sensitive studies to draw from to advance inclusive citizenship. objectives: our scoping review aims to investigate pertinent id rights issues in south africa, synthesise quantitative and qualitative studies, and provide a synopsis of available evidence on which to base future work. we aim to clarify key concepts, address gaps in the literature and identify opportunities for further research. method: we followed strict eligibility criteria. medical subject heading terms were entered into seven databases. seven reviewers worked independently, two per paper. quantitative and qualitative data extraction forms were designed. we followed preferred reporting items for systematic review and meta-analysis (prisma) guidelines and registered a protocol. an inductive approach enabled a thematic analysis of selected studies. results: by following prisma guidelines, 82 studies were assessed for eligibility of which 59 were included. ten sub-themes were integrated into four main themes: the right not to be discriminated against, the right to psychological and bodily integrity, the right to accommodating services and challenges to rights implementation. conclusion: people with intellectual disability face compound difficulties when trying to assert their constitutionally entitled rights. this ongoing project requires serious commitment and action. statutory obligations to nurture every south african’s human rights naturally extend to pwid and their supporters who forge ahead in a disabling environment. background most people with disabilities live in low-income countries and represent nearly a quarter of the world’s poorest people (emerson 2007; groce et al. 2011a, 2011b). against this backdrop, approximately 200 million people live with intellectual disability (id), making it the world’s most prevalent disability (world health organization [who] & world bank 2011). medical definitions ascribe id to deficits in intellectual and adaptive functioning across various domains with onset during the developmental period (aaidd 2017; american psychiatric association [apa] 2017; crnic et al. 2017). the american psychiatric association no longer categorises id by quantified performances on intellectual ability assessments (apa 2013). individuals now shift along a continuum of domains that include conceptual, social and practical functioning, and that inform on mild, moderate, severe or profound id. supported decision-making and individualised care can help people with intellectual disability (pwid) negotiate limitations across compromised domains. limitations are unlikely to be reversible, but adaptive skills can be developed in suitable environments. this will require types of assistance that vary according to levels of support needs and severity of id (figure 1). figure 1: continuum of support needs according to severity of intellectual disability. regardless of subjective experiences, the medical model regards impairment as an inherent problem of the individual that is addressed through medico-psychological skill (nash & navias 1992; mckenzie & macleod 2012a; roy, roy & roy 2012). in south africa, there are particular dedicated id treatment sites, and special education is provided in separate schools on medico-psychological recommendation (engelbrecht, oswald & forlin 2006; mckenzie & macleod 2012a). the social model of disability resists pathologising impairment by separating it from disability (goodley 2001; shakespeare 2017; swartz et al. 2012). individuals may live with various impairments, but their political and social environments do the disabling. the impairment alone ‘is not sufficient for disablement to occur. what disables people – what makes people disabled – is how society responds to the impairments’ (swartz 2010:27–28, own italics). rather than locating disability in the person, it is viewed as the result of interactions among disabling physical environments and unequal social relationships that further encumber impairment (young & berry 2016). it separates bodily impairment from a socio-political unwillingness to accommodate an individual’s needs (mckenzie & macleod 2012a; young & berry 2016). the social model of disability does not escape criticism either. disability might be a function of physical and socio-political environments, but competence can be interactively achieved among individuals and enabling environments (mckenzie & macleod 2012b; pillay 2003). in this way, individuals are enabled and environments become impairment competent. moreover, some disabled people are proud of bodies marked by prejudice and chipped away by the norms of a predominantly able-bodied world (hughes et al. 2017). by synthesising the medical and social models, the who (2002) offers an integrative bio-psycho-social model of disability. the international classification of functioning, disability and health (icf) frames biological, individual and social aspects of health as inseparable. disability as a consequence of disease or socio-political ignorance shifts to a site of interacting health, environmental and personal factors (mji et al. 2017). at any given time and in any combination, these factors can facilitate or hamper a person’s functioning (selb 2017). finally, if we appreciate disability as fluid and situational, we are no longer polarised or opposed as enabled or disabled, but occupy different spaces on the continuum of ‘changing states of impairment and health’ (swartz et al. 2012:1). by drawing on one another’s experience of disability and able-bodiedness, it becomes possible for us to shift and meet along this continuum and reach a ‘richer understanding’ of living with id (swartz et al. 2012:8). the issue of societal inclusion and exclusion of pwid on psycho-medical, socio-political or accessibility grounds touches on core questions of rights claims, justice, citizenship, equality, resources and protections. people with intellectual disability may have limitations in advocating for themselves and ensuring that their best interests are prioritised. not affording pwid support or opportunity to contribute to policies that directly impact their lives can be viewed as morally abusive (kittay 2009:620). disenfranchising pwid maintains vulnerability to exploitation, marginalisation and inequality in systems where the distribution of care and services hardly occurs in their favour and very seldom adequately (adnams 2010). without appropriate supportive decision-making or opportunity to assert access to recourse with assistance, pwid are subjugated to whatever form care may take and at risk of abuse and neglect (makgoba 2016). driven by misconception, fear and lack of knowledge, discrimination against pwid can result in isolation, segregation, stigma and death (byrne 2017; flores 2017; lindau et al. 2017; maclean et al. 2017; makgoba 2016; thornicroft et al. 2007; wissink et al. 2017). only 2 out of every 100 children with disabilities receive schooling in developing countries (cramm et al. 2013; du plessis 2013). compared to the general population and other disability groups, pwid are more often unemployed or underemployed because of low expectations of competence (‘they’ can’t do much) and high expectations of problems (‘they’ are difficult to work with) (carvalho-freitas & stathi 2017; merrells, buchanana & waters 2017; who 2011; wilson et al. 2017). a south african setting south africa exceeds id prevalence in high-income countries (maulik et al. 2011; mckenzie 2016; tomlinson et al. 2014). to this point, foetal alcohol spectrum disorder (fasd) is an easily preventable cause of id, but south africa’s prevalence rate of 6% – 9% is one of the world’s highest (adnams 2010; de vries et al. 2013; roozen et al. 2016; urban et al. 2008). accurate south african data on id prevalence among 2–9-year-old children were last gathered in the 1990s (christianson et al. 2002; kromberg et al. 1997, 2008). during the 2011 national census, id was not directly measured, and statistics on children with disabilities aged 0–4 years were not profiled (statistics south africa [ssa] 2014). current accurate south african id data are rare (du plessis 2013; fujiura, rutkowski-kmitta & owen 2010). at last count, 3.2% of people aged 5 years and older have mild and 1% of people have severe difficulties ‘in remembering or concentrating’ (ssa 2014:34).1 despite ratifying the united nations convention on the rights of persons with disabilities (uncrpd) (the united nations [un] 2006) a decade ago, south africa’s dualist legal system has yet to assimilate the international conventions into domestic legislation on behalf of pwid (huus et al. 2015). lawmakers’ lack of understanding of what ‘intellectual disabilities actually mean’ was even officially gazetted in parliament (department of social development [dsd] 2015, own italics). additionally, although the white paper on the rights of persons with disabilities (dsd 2016) commits to pwid, it makes little mention of how these commitments will be implemented or monitored (de vries et al. 2013; drew et al. 2011; kopel 2017; officer & shakespeare 2013; roy et al. 2012). because of shortage of educational programmes for children with intellectual disability (cwid), parents in countries like south africa easily become unpaid caregivers because care burdens and lack of support hinder their pursuit of employment (geiger 2012; mckenzie & mcconkey 2016). being out of school also limits exposure of cwid to formal teaching on sexual health programmes (rohleder & swartz 2009; who 2011). this is problematic, because more than two-thirds of adolescents with id are at risk of sexual abuse before they turn 18, whereas up to 83% of women and 32% of men with id are at increased risk of being sexually assaulted in their lifetime (byrne 2017; peckham 2007). other frequently violated rights of pwid in south africa pertain to physical abuse, exclusion, barriers to accessing medical and mental health services, involuntary confinement, denial of marriage or parenting, financial exploitation, unemployment, occupational restrictions and living safely outside of institutions (drew et al. 2011; erasmus, bornman & dada 2016). these rights are violated in public, family homes, places of education and work, care centres, health care settings, police stations, courts and civic offices (drew et al. 2011). as yet, we know little about south african evidence-based studies on which to build better id rights practice. most id research comes from high-income countries where pwid enjoy various government and community supports but is not always applicable to settings in which most pwid live (glicksman et al. 2017; groce et al. 2011a, 2011b; mckenzie, mcconkey & adnams 2013a; robertson et al. 2012). for this reason, we aim to investigate pertinent south african id rights issues, clarify key concepts, synthesise quantitative and qualitative studies and provide a synopsis of existing evidence (arksey & o’malley 2005; daudt, van mossel & scott 2013; harden 2010; peters et al. 2015). aim the primary aim of our scoping review was to collect all literature published in peer-reviewed journals on id rights in south africa over the past 25 years (1992–2017). we set out to study the id advocacy, awareness and rights promotion research; describe outcomes of studies on realising human rights entitlements; and identify publications that address claims to citizenship of south african pwid. following peters et al.’s (2015) suggestions for scoping reviews, our objectives were guided by questions specific to this study: what do we know about the state of human rights of pwid in south africa? are there barriers jeopardising rights realisation? are pwid participating in socio-political lives of communities? is rights advocacy needed? which studies can we use to address these questions? we also aim to identify areas for future investigation by highlighting gaps in the available research. method we followed the preferred reporting items for systematic review and meta-analysis (prisma) guidelines and registered a protocol with prospero (crd42016036100). an inductive approach accommodated thematic analyses of selected studies. eligibility included studies are on rights of pwid in south africa published between 1992 and 2017. research sites and participants are in south africa. comparative country studies on id had to include south africa (world bank 2017). eligibility criteria for inclusion in this review are summarised in table 1. table 1: eligibility criteria for inclusion of studies in this scoping review. reviewer panel consensus minimised study selection bias by resolving issues like the eligibility of studies on fasd and autism spectrum disorder (asd). intellectual disability is not required for an fasd diagnosis, and low or average intellect is actually more common in fasd (royal college of psychiatrists [rcp] 2001). studies with participants with fasd and low or average intellect were thus excluded from this review (rcp 2001). although developmental disorders and id coexist and share associations, asd may not have caused id and not all individuals with asd have id (rcp 2001). conversely, studies that included, for example, people with down syndrome (ds) and phenotypical id were eligible for review (rcp 2001). information sources we searched seven databases (web of science, pubmed, scopus, eric, africa-wide information/nipad, african journal archive and african index medicus) to increase the likelihood of locating south african publications among international studies. electronically unavailable records were hand searched, authors were contacted or subject librarians at stellenbosch university were approached. backward and forward citation searches identified additional studies. the last search ran on 31 august 2017 which was also the author contact cut-off date. search strategy data were sought for outcome, setting and participants by using medical subject headings (mesh) terms (box 1) as per systematic scoping review practice.2 searches were sensitised for time span (1992–2017) and english as publication language. english is a compulsory subject in south african schools and the language of business and government. it is also the preferred instruction medium in most tertiary institutions from which id practitioners and researchers graduate (dictionary unit for south african english 2016; donohue, bornman & granlund 2015). box 1: search by medical subject heading terms. study selection in an attempt to minimise risk of bias across studies that may affect the overall review results, seven reviewers worked independently, two per paper, to assess each study according to the review’s eligibility criteria (c.c., o.c., j.m., l.a., m.s., s.m., a.h.). three experts were available for data verification (p.s., c.a., l.s.). future systematic reviewers can critically appraise individual bias within studies by means of checklists suitable to study design and available in the public domain as offered in table 2. individual studies can be assessed for evidence of bias reduction by purposeful design or by ways in which authors acknowledge any bias that might affect individual study results. table 2: critical appraisal checklists. data collection data extraction forms for quantitative and qualitative studies used picos (population, intervention, comparison, outcome, study design) and spider (sample, phenomenon of interest, design, evaluation, research type) elements, respectively (cooke, smith & booth 2012) (tables 3a and 3b). table 3a: examples of data extraction forms – population, intervention, comparison, outcome, study design: for quantitative studies. table 3b: examples of data extraction forms – sample, phenomenon of interest, design, evaluation, research: for qualitative studies. ethical considerations although this systematic review did not require ethical clearance, it is based on literature sought for a research study that obtained ethical clearance from the health research ethics committee of stellenbosch university’s faculty of health sciences (federal wide assurance number: 00001372, institutional review board number: irb0005239). results by following prisma guidelines, 156 records were identified overall. ninety-six studies remained after deleting duplicates. two reviewers screened each abstract resulting in 14 exclusions. eighty-two studies were assessed for eligibility of which 59 were included for qualitative synthesis (figure 2). figure 2: preferred reporting items for systematic review and meta-analysis flow diagram – results of study selection. characteristics of included papers (n = 59) are summarised in table 4 in reference to alphabetically ordered first author, topic, study design and outcome. they are discussed in more detail below. studies made use of quantitative (n = 26), qualitative (n = 31) and mixed-methods (n = 2) designs. table 4: characteristics of included studies (n = 59). individual study findings were synthesised into 10 sub-themes. these were then integrated into four main themes (table 5). the first main theme speaks to the right not to be discriminated against (n = 36) and addresses inclusive education, inclusive communication and the right to be understood, acknowledgement of competence and capacity to be included, and socio-political participation and inclusive citizenship. the second theme addresses the right to psychological and bodily integrity (n = 11) in terms of protection against abuse, and the right of abuse victims to appropriate treatment. thirdly, the right to be accommodated (n = 8) speaks to availability of appropriate services and subsequent access to these services. finally, main theme four touches on challenges to rights realisation (n = 4), warns of barriers to support and considers obstacles to rights implementation. table 5: themes and sub-themes. the majority of included studies pertain to the right not to be discriminated against (n = 36) with inclusive education (n = 14) and acknowledgement of competence and capacity (n = 13) also enjoying focus. the right to psychological and bodily integrity (n = 11) enjoyed slightly more research interest than the right to be accommodated (n = 8) and challenges to realisation of rights (n = 4). rights issues that received the least amount of research attention throughout the review period include the right to be understood (n = 4) and availability of appropriate services (n = 2). results show that the right to socio-political participation and inclusive citizenship requires urgent investigation (n = 1). the bill of rights (act 108 of 1996) enshrines universal dignity (s7.1), equality (s9.2), protection against discrimination by persons or the state on grounds of disability (s9.3), life (s11), bodily and psychological integrity (s12.2), voting in elections (s19.3a), health care (s27.1a) and primary and secondary school education (s29.1a) (republic of south africa [rsa] 1996). although the constitution and bill of rights still guides south africa’s post-democratic growth, id remains excluded from socio-political discourses on equity and transformation. if meaningful transformation is only reached by including the whole of society, excluding pwid risks further discrimination and rights abuses of millions of south africans. right to not be discriminated against the right to inclusive education, inclusive communication, competence and capacity, and socio-political participation speaks to issues of discrimination (n = 36). popular belief that pwid are inferior opens them up to abuse and exploitation (phasha & myaka 2014). as vulnerable targets of stigmatisation and disenfranchisement, such discrimination is hard to overcome without support and advocacy (carey 2003; kamga 2016). younger adults with id from lower socio-economic areas who also have physical disabilities experience additional stigma (ali et al. 2015). disability exacerbates complicated issues of race and identity in south africa, and black individuals with mild id experience more stigma than white and mixed race pwid (ali et al. 2015). inclusive education the bill of rights entitles children and adults to basic education (s29.1a, rsa 1996). south africa also interpreted and used international declarations to transition towards greater inclusion in education. the education system was meant to adjust in ways that would accommodate diverse learners’ needs as inclusively as possible (engelbrecht et al. 2003). after the western cape high court3 was petitioned on claims to education in 2011, the state was ordered to ensure – within reason – affordable access to adequate education for children with severe and profound id (cspid) (du plessis 2013; mckenzie et al. 2017). the white paper on the rights of persons with disabilities (2016) now reinforces the enrolment of children with any severity of id previously refused access (dsd 2016). although the right to basic education is immediate, the state can still exclude pwid from educational settings by arguing reasonable grounds (kruger 2015; ngwena 2013). up to 260 000 school-going aged children with disabilities in south africa were not enrolled in 2001 – by 2009, the figure amounted to 467 005 (du plessis 2013). the state discriminates against cspid, in particular, by using severity of impairment to disqualify them from compulsory education (ngwena 2013). most enrolled children with mild and moderate id are separated into schools for learners with special educational needs (lsen), whereas cspid are further segregated in special care centres (donohue & bornman 2014; spangenberg et al. 2016). by such segregation, educational policy and schooling for cspid has become a site of disablement and degradation (geiger 2012; human rights watch 2015; ngwena & pretorius 2012). few urban cspid under 4 years attend special care centres (spangenberg et al. 2016), and even fewer do in rural areas where prevalence is higher but care centres in shorter supply (huus et al. 2016). although rural and urban caregivers are equally aware of rights to education (p = 0.001), urban caregivers believe more firmly that cwid have rights (p < 0.001) (huus et al. 2016). including pwid in non-discriminatory educational communities is complicated. people with intellectual disability have vastly diverse educational needs and meeting them equitably will require the entire south african mainstream school-lsen-care centre split system to change (engelbrecht et al. 2003; erasmus et al. 2016; hall & theron 2016). adapting curricula for cwid in regular or mainstream classes will demand effort and perhaps impact negatively on educators’ views of inclusion, but training and support can facilitate inclusive attitudes (donohue & bornman 2015; engelbrecht et al. 2003; hall & theron 2016; mckenzie & macleod 2012b). addressing diverse educational needs can lead to flexible teaching of cwid in regular schools, accessible assessment practices and learning life preserving skills (mckenzie & macleod 2012b; nel, kempen & ruscheinski 2011; rohleder & swartz 2009). inclusive communication augmentative and alternative communication (aac) can support pwid who have difficulties with conventional communication in various settings (bornman & alant 1996, 2002; bornman et al. 2011; dada et al. 2013). making little effort to understand what pwid who have communication difficulties are saying, despite the availability of aac, hinders the right to report rights violations (pillay 2012a). enhancing reciprocal communication – realising the right to be understood – can raise self-advocacy opinions and reduce continuous victimisation (bornman et al. 2011). competence and capacity where competence relates to the ability to do something successfully or efficiently, capacity speaks to legal independence and participation during legal proceedings (un 2006). having one’s experiences and accounts of events received in a court of law, for example, is important for building competence (bornman et al. 2011; mckenzie 2013; nash & navias 1992). competence: environmental challenges early in life may inadvertently contribute to developing protective social maturity and competence in cwid (pillay 2003). such competence might assist those leaving school with transitioning into gainful work placements aimed at further skills development (nel, van der westhuyzen & uys 2007; van niekerk et al. 2015). female learners subjected to school-based sexual violence defy misconceptions that pwid lack comprehension that their rights are violated, or lack competence to respond accordingly (phasha & nyokangi 2012). disclosures of coercion, and of being threatened and humiliated for refusing male learners’ sexual advances, evince awareness of rights to bodily and psychological integrity (phasha & nyokangi 2012). focusing only on biomedical limitations can overshadow individual competencies, lower expectations for new learning, minimise subjective experiences of living with id and reinforce unequal power relations (donohue & bornman 2014; geiger 2012; mckenzie & macleod 2012a; young & berry 2016). capacity: denying capacity legitimises discrimination and legally reinforces social prejudice against pwid (pillay 2012a; un 2006). relative to severity level (e.g., mild, moderate, severe or profound id), adults with mild and moderate id can negotiate consensual sexual relationships with necessary support and guidance (hough 2012; phasha & miyaka 2014; reinders 2008). yet in cases of sexual violence perpetrated against pwid, the burden to prove competency that consent was refused is on the survivor with id (pillay 2008, 2012a, 2012b). despite the survivor’s ability to give an account, legal determination of capacity to testify against the perpetrator is ultimately out of the survivor’s hands and depends on results of mental health examinations (phaswana, van der westhuizen & krüger 2013; pillay 2008, 2010, 2012a; pillay & kritzinger 2008; pillay & sargent 2000). augmentative and alternative communication can enable courts to consider various forms of non-conventional proof of capacity and competence to give testimony (bornman et al. 2011). inclusive citizenship citizenship provides legal status and involves participating freely in a particular national space on condition of honouring various rights and duties (yeung, passmore & packer 2008). when viewed as a politically ‘unfit’ homogenous group, the political rights of people with intellectual impairment are disabled in cases where individuals have competence and capacity to make political decisions (dowse 2009; mcdonagh 2008; mckenzie & adnams 2014; smith, foley & chaney 2008; stein & stein 2007). the medico-psychological model’s prescription of special health services and protections, though warranted, risks the independence of pwid to apply their political and participatory rights as citizens with political choices (mckenzie & macleod 2012b). however, equitable participation (voting), appropriate services (assistive technology) and protections (against voter intimidation) can dispel the assumption that specialist services, protections and supports are impossible to reconcile in order to realise the political rights of pwid (mckenzie & macleod 2012b; pieterse 2006). the uncrpd’s article 8 addresses prejudice and stereotyping, and articles 29 and 30 pertain to political and social community participation (un 2007). yet, safe inclusion of pwid as members of south african communities is yet to be aligned with these principles (mckenzie, mcconkey & adnams 2013b). right to psychological and bodily integrity the second theme addresses the right to psychological and bodily integrity (n = 11). despite attempts at advancing legislation and public awareness around id, individuals with id appear to be easy targets for perpetrators of sexual violence. sexual abuse of teenagers with id is widespread, yet they experience compounded difficulties when navigating the justice system. in light of the vulnerability to sexual assault and becoming a victim of crime in south africa, communicative capacity and being understood becomes especially important during subsequent legal proceedings protection against abuse female pwid are at increased risk of sexual abuse, that of teenagers with id is common, and close relatives are implicated in most cases of sexual assaults against cwid (bornman & rathbone 2016; calitz et al. 2014; meel 2009; phasha 2009, 2013). perpetuating such rights violations are misconceptions that pwid have a high sex drive, possess unusual power and feel no pain, and that sex with pwid is an act of pity and can cure the perpetrator of disease (phasha & myaka 2014). survivors with id are particularly vulnerable to psychological effects of sexual assault and present with higher rates of post-traumatic stress disorder and symptom intensity than id individuals with non-sexual traumatic histories (shabalala & jasson 2011). given these increased vulnerabilities, it is unthinkable to exclude pwid from sexual education programmes (yildiz & cavkaytar 2017). without access to sexual health education, pwid will continuously struggle to protect themselves against unwanted sex, pregnancy and transmittable infections (bornman & rathbone 2016; meel 2009; rohleder & swartz 2009). dispelling harmful misconceptions about id and sexuality might initiate services, policies and beliefs that are more supportive of significant relationships. people with mild and moderate id can develop meaningful sexual relationships by learning about, and consenting to and maintaining healthy sexual behaviours (bornman & rathbone 2016; kramers-olen 2016; phasha & myaka 2014; rohleder & swartz 2009). individuals with severe and profound id will find it harder to negotiate consent around sexual practices. interventions aimed at reducing incidence of sexual abuse of pwid can occur in formal educational and informal community settings (phasha & myaka 2014). for example, traditional healers hold high esteem among many south africans, and customary notions that jeopardise rights of pwid can be reconceptualised with these individuals (kromberg et al. 2008; phasha & myaka 2014). right to appropriate treatment: health, justice and well-being tackling id needs at primary health care level can advance universal services and foster integration of pwid into the national health system (molteno, adnams & njenga 2011; petersen 2004; pillay & siyothula 2011). high rates of sexual violence warrant mental and physical health interventions for pwid at primary health clinics (phasha 2013; shabalala & jasson 2011). we appreciate that sexual assault cases involving complainants with id challenge the south african investigative and judicial systems (calitz 2011; pillay & kritzinger 2008). decisions about an id survivor’s ability to testify should not only depend on measures of intellectual functioning but consider self-determination as well (phaswana et al. 2013). appropriate mental health and legal services for id rape survivors can aid justice and equality under the law (ss9.1 and 9.2) (rsa 1996). the sexual abuse victim empowerment (save) programme exemplifies a not-for-profit project established for complainants with id in sexual assault cases (dickman & roux 2005). since 1990, save has advised investigators and prosecutors, addressed complaint-specific service needs like court preparation and availed expert testimony (dickman & roux 2005). by 2005, conviction rates similar to the best rate for sexual assault cases in the general population were achieved (dickman & roux 2005). since then, justice for id victims of sexual assault has lost some ground (pillay 2012b), and the white paper on the rights of persons with disabilities admits that police lack disability service skills and have reservations about responding to complaints on behalf of pwid (department of social development 2016). right to be accommodated the lack of reliable and affordable public transport infrastructure and expenses incurred to access private transport, as well as the high rate of human immunodeficiency virus infection and acquired immune deficiency syndrome (hiv and aids) and its prioritisation in the primary health care system, serve to complicate access to state-subsidised primary care medical services throughout south africa. the right to be accommodated (n = 8) speaks to subsequent access to available and appropriate services for pwid. availability of appropriate services most pwid in south africa likely suffer poor nutrition and live in socio-economically distressed areas that further predispose them to negative outcomes (pillay & siyothula 2011; slone et al. 1998, 1999). the majority of families who care for dependent pwid rely on monthly social grants of r1600 (± usd124 at the time of writing) (south african social security agency 2017), and one in four families frequently go without food before their next grant pay-out (pillay & siyothula 2011). unmet service needs of pwid combined with poverty create a dire situation for pwid (adnams 2010; de vries et al. 2013; mckenzie et al. 2013b; saloojee et al. 2007; tomlinson et al. 2014). nonetheless, there is little evidence of service integration among south africa’s health, education and social development departments in meeting these needs (saloojee et al. 2007), whereas the opportunity costs of informal id care remain unrecognised (mckenzie et al. 2013b). further, rights concerns pertain to ill-treatment of pwid by health workers (newton & mcgillivray 2017). disconcertingly, primary health nurses are potential sources of support and often the first professional contact for families caring for pwid (bornman & alant 2002). ill-treatment of pwid and their caregivers could be reduced by up-skilling primary health care professionals with knowledge of id care (bornman & alant 2002). community-based services for pwid can be supported by implementing and monitoring task-shifting of appropriate assessment, intervention and referral services (geiger 2012; petersen 2004; shabalala & jasson 2011). access to available services people with intellectual disability in south africa remain excluded from services that could encourage their well-being (adnams 2010; mckenzie, mcconkey & adnams 2013c; molteno et al. 2011). children with intellectual disability, for example, are five times less likely to receive rehabilitation services than physically disabled children (p < 0.0001) (saloojee et al. 2007). owing to funding difficulties, community homes for adults with id focus on custodial rather than participatory socio-political practices (mckenzie et al. 2013c). although community-based residential and occupational programmes can enable socio-economic participation (dsd 2016), the misconception that pwid are economically unviable or unable to contribute financially to their communities violates their socio-economic rights (dowse 2009; mcdonaugh 2008). adults who contribute in the form of child care, household chores and social grants feel exploited rather than valued for their role (mckenzie 2016; mckenzie et al. 2013c). adults with id who also have behavioural, physical and mental health difficulties face multiple barriers to accessing necessary services (de vries et al. 2013; mckenzie et al. 2013b). mentally ill pwid may experience marginalisation in an amplified manner by being sequestered as less interesting yet more bothersome members of disabling societies. given the direction of power in such settings, any protest on their part or ‘suggestions … about care are likely to be taken as resistance or obstruction’ (tronto 2010:165), confirming their status as less than equal adults. challenges to rights realisation finally, challenges to realisation of rights (n = 4) warns of barriers to necessary levels and kinds of support and considers obstacles to rights implementation. people with intellectual disability struggle to exercise their constitutional rights when confronted with service barriers and low political prioritisation of care (department of health [doh] n.d.; donohue, bornman & granlund 2014; huus et al. 2015). rights to health are hampered by shortages of professionals with id training, unavailable medications typically indicated for treatment, obstructive referral pathways, travelling to multiple medical facilities for various interventions and poverty (huus et al. 2015). the majority of children with disabilities in south africa do not attend compulsory school and a lack of clear policy constrains inclusive education (donohue & bornman 2014, 2015). children with physical disabilities who also have id will most likely be excluded from receiving assistive devices and rehabilitation (alper & goggin 2017; boot et al. 2017; donohue et al. 2014, 2015; saloojee et al. 2007; spangenberg et al. 2016). moreover, cwid are at increased risk of abandonment, abuse, multiple handicap, behaviours that challenge but may be phenotypical, co-morbid psychiatric difficulties, preventable illnesses and poor physical and dental health (de vries et al. 2013; dickman & roux 2005; giarelli et al. 2009; molteno et al 2001; pillay 2012a, 2012b; pillay & kritzinger 2008; roberts et al. 2016; van rensburg 2007). most adults with id in south africa are cared for by family and predominantly so by women. caregiver experiences of isolation and minimal support are common and similar across race and class (mckenzie 2016; mckenzie & mcconkey 2016). care burdens that restrict personal growth and opportunities to pursue employment contribute to caregiver stress and pose risks to sustainable care resources (coetzee 2015; mckenzie & mcconkey 2016). discussion underestimating pervasive ableism in south africa trivialises the exclusion of pwid from realising their rights. public infantilisation, abuse and taunting perpetuate the isolation of pwid who may find themselves caught between negative public perceptions and attempts at community, occupational and socio-political inclusion. south africa’s political rights (s19.3a, rsa 1996) indiscriminately entitle prison inmates to vote in elections, whereas citizens with id face multiple barriers to exercise this right (combrinck 2014; hartley 2013; kopel 2017; ndenze 2013; swart 2015). south africa’s ‘unsound mind’ aphorism maintains an outdated justification for disenfranchising pwid regardless of contemporary support (article 29a, un 2006) and successful suffrage elsewhere in the world (hood 2014; kjellberg & hemmingsson 2013; the electoral commission uk 2015). denial of competence and legal capacity are also fundamental id rights violations that perpetuate discrimination and exclusion. given contemporary interpretations of legal capacity and equality under the law (article 12, un 2006), the onus of proving that pwid are (un)able to participate in legal proceedings that impact their lives should be on the court – not on the survivor with id. people with intellectual disability are often targets of sexual violence, but obtaining justice for survivors with id is difficult in south africa. we thus question whether sexual assault survivors who have id, after suffering trauma and perhaps undergoing a medico-legal examination, must undergo still further evaluations before being deemed fit to testify to their account of events (pillay 2008). why should rape survivors with id have to submit to testing at all, as opposed to perpetrators proving they were unaware of their victims’ intellectual impairment? having to competently ‘pass’ a mental health exam prior to having capacity bestowed makes it harder for pwid to obtain justice, not easier. this approach to litigation might actually violate the dignity, equality, bodily and psychological integrity, and protection of pwid against discrimination by the state on grounds of disability (rsa 1996). having ratified the uncrpd (un 2007), should the state not honour article 12.3 and provide any means necessary to equitably meet the needs of pwid in the criminal justice system? the forensic examination of sexual assault survivors with id should be critically (re)considered – no matter the levels of support required in the absence of mental health testing (prinsloo 2008; tronto 2010). furthermore, justice for offenders with id must also be considered. offenders may understand truth, lies and moral wrongfulness but be less able to link these to real implications. knowing right from wrong should be differentiated from successful applications of social insight and adaptive skills in appreciation of the consequences of wrongfulness. we question denying id defendants the opportunity to testify in their own defence. a finding of intellectual impairment need not summarily disqualify one from testifying, because defendants with comparatively better adaptive than intellectual functioning can be triable (calitz et al. 2007; pillay 2012a, 2012b). the disenfranchising south african ‘unsound mind’ aphorism is again criticised, because pwid are not automatically without capacity (combrinck 2014; phaswana et al. 2013). in returning to our id definitions, legal capacity requirements that emphasise adaptive abilities might challenge a medical underscoring of intellectual deficit. because abilities to observe, remember and communicate can be established during testimony, defendants might be enabled to give evidence – if so advised by legal representation – notwithstanding conventional ‘test’ findings of intellectual deficit (pillay 2008, 2012a, 2012b; pillay & kritzinger 2008). thus far, we have commented on the vulnerability of pwid who are victims and perpetrators of crimes. but what of any adults with id in south africa? by interpreting the united nations convention on the rights of the child (uncrc) (un 1989), the protection of vulnerable children is legislated in south africa’s children’s act (38 of 2005, department of justice [doj] 2005). consequently, the departments of social development and health are legally required to intervene on behalf of children at risk. the mental healthcare act (doh act 17 of 2002) and general regulation amendment (doh 2016) supports institutional state care for adults with severe and profound id, but lacks rights governance for adults with any severity of id living in community settings. beyond the inadequate mental healthcare act (doh 2002) or even the older persons act 13 (doj 2006), no act similar to the children’s act (doj 2005) intervenes on behalf of vulnerable adults with id at risk of rights abuses and death (makgoba 2016). in light of the lacking legislation as discussed above, we turn to the esidimeni care crisis, violations of the constitutional right to life (rsa 1996) and the urgency of purposeful community safety requirements of pwid. the esidimeni crisis started in 2016 and marks the deaths of more than 140 adults in community care after being discharged from a specialist care facility by the gauteng health department (bornman 2017; lund 2016; rahlaga 2017; tlhabye 2017). although at least half of the deceased lived with id in the absence of psychiatric illness, a well-intended ombud report (makgoba 2016) obscured distinctions between mental illness and id and thus dismissed the particular vulnerabilities and service needs of individuals who live with either or both. with no statutory framework or legislated minimum threshold of community care to answer to yet, the state currently maintains no legal obligation to perform adequate safeguarding of adults with id. despite deinstitutionalisation, pwid remain isolated from communities in which they feel victimised, rarely participate in basic education and skills development programmes and struggle to find appropriate work placements without help. the need remains for protective and participatory community-based services, but these must be developed and monitored in line with purposeful care and safe community inclusion. this is particularly urgent as results have shown. when family caregivers burn out or die, pwid are left with limited options. few relatives or neighbours willingly take on the support needs of pwid (geiger 2012), whereas community care facilities are in short supply and have years-long waiting lists. as it is the right to inclusion of every person in south africa, pwid should also be able to have their health needs initially assessed or met at primary health care level, yet are often redirected to specialist settings for services that could have been delivered at their local clinics. in the same vein, a lack of id awareness at primary care level results in pwid getting lost to referral services in cases where they should have been receiving specialist intervention. we end this discussion by suggesting that one way to reduce discrimination against pwid is to encourage equitable practices that include and rely on the expertise of people living with id. in just societies that celebrate self-determination, assistance is commonplace, and barriers to developing adaptive abilities are removed to increase competency. practical implications in returning to our aims and objectives, we now see that pwid in south africa face more difficulties than the general population when attempting to access justice, health, educational, employment and social services. prejudice increases violence against pwid, but negative bias excludes them from public health and safety campaigns. there is a need to address such discrimination through advocacy interventions similar to those employed in other national rights campaigns, like the hiv/aids treatment action campaign4 (tac.org.za). legislation for vulnerable adults with id is yet to be advocated for and taken up in protections, services and policies in south africa. an adult at risk is any person who is aged 18 years or over and at risk of abuse or neglect because of their needs for care or support. we can cautiously turn to just as recent european examples of the united kingdom care act (doh uk 2014), safeguarding policy of the office of the public guardian (office of the public guardian england and wales 2015), vulnerable adults act draft bill (government of singapore 2016), protection of vulnerable adults from financial exploitation act (alabama securities commission 2016) and the adult protective services act (state of illinois department on aging 2013). these examples share the common goal of preventing harm and reducing the risk of abuse or neglect to adults with care and support needs, and safeguarding adults in ways that support them in making choices and having control in how they choose to live their lives. in south africa, such legislation can raise public awareness so that individuals and communities can play their part in preventing, identifying and responding to the abuse and neglect of vulnerable adults living with id. we all require opportunities to realise our constitutional rights. people with intellectual disability require encouragement to participate in the socio-political lives of their communities, whatever forms these take. sufficient support will exceed minimal levels but must be provided – whether these offers are taken up will remain every individual’s choice, but must be made available (stein & stein 2007; tronto 2010). exercising id rights implies negotiating not only with individuals who aim to support id voices, dismantle restrictions and develop political behaviours but also with those who prefer to maintain barriers. because compliance and resistance to inclusive processes can be expected, self-advocacy groups and local id organisations must be sustained. students from various disciplines enthusiastic about working with pwid will be better prepared for meeting id care needs if trained as integrated practitioners (geiger 2012; roberts et al. 2016). instructors with id can broaden practitioner understanding, and future service designs can integrate the experience of pwid and their caregivers (grut et al. 2012). continuous professional development and journal clubs can keep practitioners current on best practice (donohue & bornman 2015). rights realisations for pwid requires eliminating stigma, encouraging inclusive practices, opportunities for occupational skills development, access to job coaching and supportive employers and pathways out of poverty. dispelling stereotypes and presumptions, campaigning for quality primary id health care, advocating for legislative support and lobbying political will could reduce the risk of life-threatening discrimination against pwid (makgoba 2016). implications for research south african id rights researchers have aligned their arguments with the bill of rights (rsa 1996) and global disability initiatives like the uncrpd (drew et al. 2011; un 2006). knowledge on id is still predominantly located in non-intellectually impaired individuals, mostly at universities from which pwid are excluded. if projects are not driven by people with intellectual impairment, their experiences of disablement must at least be included during service development and research planning phases. although inclusive research locates pwid as co-researchers, emancipatory research encourages principle researchers with id to select topics, collect and analyse data and publish in accessible journals with necessary support as required. both approaches can realise the right of pwid to create and claim knowledge on id matters (capri & coetzee 2012). consulting with self-advocates and researchers with id can not only change the way id is understood and responded to in south africa but also collect opinions of pwid on issues that affect their lives directly. rights issues that received the least amount of research attention throughout the 25-year review period include the right to be understood (n = 4) and the lack of appropriate services (n = 2). the right to socio-political participation and inclusive citizenship requires urgent investigation (n = 1). there are opportunities for researching the experiences and attitudes of primary health care workers towards pwid and for addressing a lack of south african evidence regarding support and interventions for offenders with id. the sexual rights and health of pwid, and rights to parent, can be included as neglected fields of study and advocacy. limitations we aimed to describe published studies on advocacy, addressing stigma and promoting id rights and awareness in south africa. it is beyond the scope of this review to include work on id in south africa that has not been published in peer-reviewed journals (i.e. ‘grey literature’), and this limitation can contribute to publication bias. although arguments on therapeutic sterilisation were rationally and logically presented by nash and navias (1992) over two decades ago, it must be noted that the context of sterilisation of pwid in south africa has changed significantly since 1992. the authors uncritically argue that persons with mild id would not be able to provide consent for sterilisation. the findings of this particular article might have been acceptable at the time, but are certainly not tolerable in 2017 (at the time of writing), and it is doubtful whether it would garner support from current clinicians in the field. donohue et al. (2014) recognise that their results are limited by the sample of cwid selected to participate in their study and that their findings cannot be generalised as representative of experiences of all cwid in south africa. despite inclusive education service delivery problems, we must highlight that there are approximately 423 schools for lsens in south africa. conclusion our scoping review investigated pertinent issues relating to the rights of pwid in south africa. we incorporated available research evidence in a synopsis of 59 eligible studies, addressed implications for practice and identified areas for future investigation. realising the rights of pwid in south africa to participate as socio-political equals, access services, own their psychological and bodily integrity, and move freely without discrimination is an ongoing project. barriers to exercising these rights were highlighted. research evidence advocates that – for a start – the rights and needs of pwid be taken up with serious commitment by the south african state, its legislature and public service departments. statutory obligations to protect and realise the rights of any south african must extend to pwid and their supporters who are forging ahead in a disabling and service constrained socio-political environment. turning back to the continuum of ‘changing states of impairment and health’ (swartz et al. 2012:1), kittay et al.’s (2005) myth of independence helps us realise that being human can be defined not by commonly shared characteristics (e.g. high-level cognitive functioning), but by what all human beings are not. we are not immune to the injurious fragility of bone and brain, we are not of able mind and body permanence and we are ultimately never independent. although still occupying a space on the fairly healthy end of swartz et al.’s (2011) continuum, we may find it difficult to imagine ourselves in a future impaired, ill or injured state. but we must take cognisance of a universal human frailty so that we can face our own inescapable fragility with dignity and justice, secure in the protection against violence of moral, psychological and physical abuse. acknowledgements we acknowledge the authors who contributed their research to this scoping review. we also acknowledge the work undertaken by the broader disability community on a daily basis. thanks to marleen van wyk for assisting us as subject librarian. many thanks to leslie swartz (phd, emeritus professor), colleen adnams (fcpaed) and peter smith (fcpsych) for their guidance. thank you to lorna kwint and the anonymous reviewers for their helpful comments, and to martha geiger, our editor. competing interests this project was made possible, in part, with assistance from the vera grover scholarship fund. the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. none of the review authors received remuneration for their contribution, nor did 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35(1), 3–19. https://doi.org/10.1007/s11195-016-9465-5 young, l.s. & berry, j., 2016, ‘slipping and holding minds: a psychosocial analysis of maternal subjectivity in relation to childhood disability’, african journal of disability 5(1), 1–9. footnotes 1. the estimated south african population is 55 908 865 (world bank 2017), implying that more than 2 000 000 individuals may be living with difficulties ‘in remembering or concentrating’. 2. mesh (medical subject headings) is the national library of medicine (nlm) controlled vocabulary thesaurus used for indexing articles. it facilitates replicability and consists of sets of terms naming descriptors in a hierarchical structure. articles are associated with a set of mesh terms that describe the content of the article. 3. western cape forum for intellectual disability (wcfid) v government of the republic of south africa and another (2011) sa 87 (western cape high court, cape town). 4. the treatment action campaign (tac) started campaigning in south africa for access to aids treatment in december 1998. it has since become one of the most impactful civil society organisations working on aids in the global south. by 2002, it successfully campaigned the constitutional court to order the south african government to provide anti-retroviral drugs to prevent vertical transmission of hiv from mothers to infants during birth. abstract introduction research methods and design results discussion limitations conclusion acknowledgements references about the author(s) mikyas abera department of sociology, college of social sciences and humanities, university of gondar, gondar, ethiopia grace l. francis division of special education and disability research, college of education and human development, george mason university, virginia, united states ansha n. ahmed department of preventive medicine, school of public health, addis ababa university, addis ababa, ethiopia department of rehabilitation science, school of rehabilitation therapy, queen’s university, kingston, ontario, canada solomon dawud department of english language and literature, college of social sciences and humanities, university of gondar, gondar, ethiopia mohammedsani ali department of sociology, college of social sciences and humanities, university of gondar, gondar, ethiopia gebrekidan shibabaw department of law, faculty of law, university of gondar, gondar, ethiopia bilen m. araya department of rehabilitation science, school of rehabilitation therapy, queen’s university, kingston, ontario, canada department of clinical midwifery, college of medicine and health sciences, university of gondar, gondar, ethiopia shana j. haines department of education, college of education and social services, university of vermont, vermont, united states heather m. aldersey department of rehabilitation science, school of rehabilitation therapy, queen’s university, kingston, ontario, canada citation abera, m., francis, g.l., ahmed, a.n., dawud, s., ali, m., shibabaw, g. et al., 2025, ‘collaboration for the inclusion of students with disabilities in education in gondar, ethiopia’, african journal of disability 14(0), a1569. https://doi.org/10.4102/ajod.v14i0.1569 original research collaboration for the inclusion of students with disabilities in education in gondar, ethiopia mikyas abera, grace l. francis, ansha n. ahmed, solomon dawud, mohammedsani ali, gebrekidan shibabaw, bilen m. araya, shana j. haines, heather m. aldersey received: 27 aug. 2024; accepted: 01 jan. 2025; published: 10 mar. 2025 copyright: © 2025. the author(s). licensee: aosis. this is an open access article distributed under the terms of the creative commons attribution license, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. abstract background: in ethiopia, children with disabilities face significant barriers to education, which are exacerbated for those living in remote villages and areas affected by conflict and insecurity. several studies have highlighted the important role that sustained multistakeholder collaborations could play in removing barriers to inclusive education, supporting students with disabilities and helping countries like ethiopia achieve inclusion. objectives: this study explored stakeholders’ strategies and the programmes and support they provide to schools or students with disabilities (k-12) to promote inclusive education in the central gondar zone, ethiopia. method: this study used key informant interviews to collect detailed information on education stakeholders’ collaborations to support the inclusion of children with disabilities. the interviewees include experts, administrators and policymakers from purposively selected governmental and civil society organisations and schools. results: this study found that collaboration focused on promoting accessibility, students enrolment and retention, financial, material and medical support, capacity-building, and institutional accountability. conclusion: this study concluded that persistent instability and conflict hindered stakeholders’ collaborative efforts in the region. it also argued that structured or semi-structured collaborations are more effective for promoting inclusive education. contribution: this article presents research findings on collaboration among educational stakeholders to promote inclusive schools and support students with disabilities. its holistic approach identifies ecological and institutional factors that affect collaborations for inclusion, as well as the support and services that could be further explored in future research. additionally, it highlights the lessons that education programmes could use to enhance community and stakeholder participation in school inclusivity. keywords: students with disabilities; gondar; ethiopia; collaboration; inclusion; education. introduction studies in lowand middle-income countries identified multiple and complex systemic, institutional and personal barriers to accessible and inclusive education for children with disabilities (ginja & chen 2021; jones, seager & yadete et al. 2021). at a system level, children with disabilities face cultural values, attitudes towards people with disabilities and policy frameworks that do not support inclusive education (mizunoya, mitra & yamasaki 2018). widespread conflict and insecurity like the scenario prevailing in ethiopia’s amhara region disproportionately affect children with disabilities and their schooling (bakhshi, babulal & trani 2018; trani et al. 2014). in schools, these children often grapple with inaccessibility, a lack of resources and discriminatory and exclusionary practices (genovesi et al. 2022). their interpersonal relations suffer from undesirable peer pressure, stigma and stereotypes, affecting their educational performance and development (chatzitheochari & butler-rees 2023; shifrer 2013). importantly, these barriers intersect, multiply, and compound their challenges in schooling, producing uneven educational outcomes and life chances for them. all children, including children with disabilities, need education to grow, improve their status, make informed decisions and contribute to the development of inclusive and democratic societies (hendricks 2007; negash 2006; wondimu 2004). international and national efforts have embraced these rationales and have promoted education for all, guided by the principles outlined in various key documents. these include the declaration of education for all (unesco 1990), the un convention on the rights of the child (un 1990), the salamanca world conference on special needs education (unesco 1994a, 1994b), the world education forum (unesco 2000), the incheon declaration (unesco 2015), sustainable development goals (undp 2015) and the unesco education 2030 framework for action (unesco 2015). in africa, additional frameworks have been established to advocate for the rights of all children, including those with disabilities, to receive quality and inclusive education. these frameworks include, primarily, the african charter on the rights and welfare of the child (oau 1999) and the african disability protocol (au 2018). ethiopia recognises these instruments and has made significant strides in promoting inclusive education for children with disabilities. it has signed the convention on the rights of persons with disabilities (un 2006), and its constitution mandates the government to allocate resources to provide education and support for all children, including those with disabilities (goe 1995). the education and training policy (etp) provides for supporting and building institutional and staff capacities for special needs and inclusive education (snie) (goe 1994). since 1997, ethiopia has been implementing successive 5-year education sector development programmes, with special attention to disadvantaged groups, including children with disabilities (moe 2010, 2021). the national plan of action on disability (molsa 2012) and the master plan for special needs/inclusive education (moe 2016) promote snie for children with disabilities – specifically, focussing on increasing enrolment at all levels and training (preand in-service) teachers on snie. ethiopia also has additional and relevant frameworks for inclusive education, including the strategy for snie (moe 2012b), guidelines for curriculum differentiation and individual educational programmes (moe 2012a), guidelines for establishing and managing inclusive education resource centers (moe 2015) and the ethiopian education roadmap, 2017–2035 (teferra et al. 2018). however, despite these policy commitments, many ethiopian children with disabilities continue to face significant barriers to their school participation and performance (ginja & chen 2021; jones et al. 2021; temesgen 2018). meeting international and continental commitments that it has entered into and domesticated as laws, policies, programmes and guidelines to promote inclusive education requires ethiopia to identify effective mechanisms to tackle the multilayered factors that obstruct the education of children with disabilities. in this respect, several authors underlined the key role of multisectoral collaboration in successful, sustained and intentional interventions to remove inclusion barriers for children with disabilities (ainscow 2020; hansen et al. 2020; hunt et al. 2001; tekola et al. 2023), especially for those in conflict situations (kadir et al. 2018). they argue that collaboration enables several stakeholders to work together and achieve policy, programme or activity outcomes (holland & fitzgerald 2023; salunke & lal 2017; williams 2015; wood & gray 1991). in inclusive education, specifically, potential and relevant stakeholders include local governments, education authorities, parents, schools, civil society and the private sector that create shared spaces to galvanise their expertise, resources, among others, to support inclusion (ainscow 2020; hansen et al. 2020; hunt et al. 2001; tekola et al. 2023). it is a complex process that involves intersecting individuals, institutions and systems (ainscow & sandill 2010; rose & doveston 2015), each with interests or agendas that may not necessarily align with those of others or the collaboration itself (wood & gray 1991). its success depends on cultivating shared interests while embracing differing priorities whose pursuit should not prevent achieving the shared goals (lax & sebenius 1986; wood & gray 1991). in this article, we explored the dynamic and complex process of multistakeholder collaboration for inclusive schools – along with its outcomes, challenges and prospects – in selected communities in northwestern ethiopia. it has been argued that ‘a multifaceted approach driven by various stakeholders’ is indispensable to, for instance, build awareness, provide training and mobilise resources towards inclusive education (franck & joshi 2017). in that spirit, a systems approach offers a holistic perspective in understanding multi-stakeholder educational collaboration in terms of interactions among participants and with their socioeconomic, cultural and political environment (berger & luckmann 1966; luhmann 1995). it helps us identify the enabling or inhibiting effects of internal factors (such as collaboration) and external factors (such as the environment) including culture, discourses, policy, school structure, interactional practices and shared agendas on the capabilities of schools or collaborations to promote inclusion (holland & fitzgerald 2023; rapp & corral-granados 2021). this study adds to the growing literature on systemic exploration of multistakeholder collaboration in education (hansen et al. 2020; karimi-aghdam 2017; makoelle & merwe 2014; rapp & corral-granados 2021). systems theory has also been used to study the collaborative approach as it applies to other sectors, including healthcare (mccovery & matusitz 2014), development (parmigiani & rivera-santos 2011), governance (bardach & lesser 1996; getha-taylor & morse 2013) and community mobilisation and development (huxham & vangen 2000; keast, brown & mandell 2007). in this study, we used systems theory to explore collaborations involving governmental organisations (gos), civil society organisations (csos) and schools to support inclusion in schools. we conceptualised schools and collaborations as adaptive systems and explored the question ‘how do educational stakeholders collaborate to make schools more inclusive and accessible for students with disabilities in gondar, ethiopia?’ using the systems theory, the study identified collaborative patterns that education stakeholders used to provide normative services and support the inclusion of children with disabilities in schools. research methods and design design and approach this qualitative-descriptive study (cohen, manion & morrison 2005; sandelowski 2000) sought to understand multistakeholder collaboration to support the inclusion of k-12 students with disabilities in gondar, ethiopia. it gathered qualitative data through key informant interviews and iteratively coded and thematised our findings pertinent to the research question. study sites this study was conducted in the central gondar zone of the amhara region, ethiopia. the zone is one of the 13 zones that make up the amhara region and has its administrative capital in gondar city. for this study, four kebeles [parishes or neighbourhoods] in four woredas [districts] of the central gondar zone were purposefully selected: kebele-02 in gondar city; kebele-02 in qola-diba; kebele-02 in delgi and kebele-01 in chilga. kebele is the lowest and smallest administrative unit in the ethiopian federal governance structure. since 1995, ethiopia has had a federal governance structure of federal or national, region, zone, woreda or sub-city and kebele – in descending size and jurisdiction. the first study site was kebele 04 of gondar city. kebele-04 hosts the tsadiku yohannes general elementary school, where 203 students with disabilities attend special and inclusive classes that accommodate children with varied disabilities. the school has diverse community resources and support from gos and csos (that include nongovernmental organisations [ngos], organisations of persons with disabilities [opds], community-based rehabilitation [cbr] and community-based organisations [cbos]). the second study site was kebele-02 of qola-diba town, located 40 km from gondar city. kebele-02 hosts the qola-diba general elementary school, among others, which enrolled 54 students with disabilities. the school had relatively diverse community support for vulnerable groups, including the university of gondar’s community-based rehabilitation (uog-cbr) programme. the third study site was kebele-02 of delgi town, located 90 km from gondar city. its comprehensive school enrolled 40 students with disabilities. the fourth and final study site was kebele-01 of aykel town in chilga woreda (district), located 60 km from gondar city. the town has nine educational institutions of different levels and has been significantly affected by persistent ethnic-based conflicts. the town availed a range of support to vulnerable children from gos and csos. sampling and recruitment based on maximum variation sampling (patton 1990), study sites were selected to represent diverse settlements (urban, semi-urban and rural), socioeconomic statuses and community resources for inclusive education. specifically, the study covered one urban site with low socioeconomic status residents (kebele-04, gondar city), two semi-urban sites (one with a higher [kebele-01, chilga] and another with a lower [kebele-02, qola-diba] level of community resources – go and cso support) and one rural site (kebele-02, delgi) (see table 1). table 1: interviewees by type of organisation and study site. across the four study sites, 26 semi-structured interviews – with nine participants from gos and csos each, and eight from schools – were conducted. inclusive education experts and coordinators at the regional education bureau that governs k-12 education across the region, including the study sites, were also interviewed. specific criteria to select organisations were used. among the csos, those that operate in at least one of the study sites and have education or student-focused programmes, including light for children, save the children, cheshire foundation, mahibere hiwot for social development, yenege tesfa, world vision and the uog-cbr programme were included. for gos, those that focus on or support school inclusion and accessibility at various levels, including the women and children affairs, the labour and social affairs, and region, zone and woreda education bureau or offices were recruited. for schools, a range of schools at different levels of inclusivity and accessibility – in terms of, for instance, having an inclusion resource centre – were targeted. finally, specific participants were recruited as key informants based on their position, expertise and knowledge of programmes, collaboration, and support for inclusion in general and inclusive education in particular. the list of participants included snie experts, directors, officers, managers and chairpersons in gos, csos and schools. data collection before data collection, research ethics boards at canadian and ethiopian universities reviewed and approved our study proposal. researchers adhered to all study procedures and scientific and moral standards for the ethical conduct of research with human participants. study participants provided verbal consent to their participation in the interviews and audio recordings of the sessions and for the researchers to use the information they provided in aggregated analysis and reporting. researchers used semi-structured interview guides to collect qualitative data from the selected individuals in gos, csos and schools (sch). they developed and finalised the guides in english first, and, native speakers translated them into amharic. they conducted all interviews in amharic, the administrative working language and peoples’ lingua franca in the study sites. they briefed all interviewees about the study’s objective and scope, the length of the interview and their rights for confidentiality and withdrawal. for later verbatim transcription, we audio-recorded all interview sessions. research assistants transcribed the audio recordings of interviews in amharic. native amharic speakers and professional english language teachers at a university in northern ethiopia translated the amharic transcripts into english texts. data analysis and presentation this study employed a qualitative descriptive approach (sandelowski 2000) to analyse empirical data regarding multistakeholder collaboration to support inclusive education in the four study sites. the researchers employed multiple phases of exploring and organising the empirical data. they started by uploading five english interview transcripts into atlas.ti (9) and conducting initial coding independently. they then collectively identified common and unique threads in the initial codes independently created and built a codebook that included all codes. the compiled codebook became the template for coding the remaining 21 interview transcripts. they iteratively created or modified the codebook as they finalised the coding process. then, the researchers grouped the codes and their associated quotations into categories and the categories into themes based on their conceptual and empirical relatedness. given the limited number of cbos, opds and ngos operating in the study sites, they were merged under a new category that is ‘csos’, allowing for a concise presentation and representation of their narratives in the report. researchers used participants’ narratives and quotations to describe and contextualise emerging themes on multistakeholder collaboration in inclusive education. they used a unique participant code for each interviewee, containing information on their order (p01, p02, etc.), sector (go, cso and sch) and study site (chilga, delgi, gondar, qola-diba and amhara region). for instance, (p02-cso, gondar) refers to the second study participant (p02) recruited from a cso operating in gondar city. ethical considerations ethical clearance to conduct this study was obtained from the university of gondar, institutional ethical review board (no. vp/rtt/05/395/2021). results we identified five core areas of stakeholders’ collaboration to support the inclusion of students with disabilities in education: (1) school or community accessibility; (2) student enrolment and retention; (3) financial, material and medical support; (4) teacher and student capacity-building; and (5) institutional accountability. school or community accessibility educational inclusion is only possible when students can physically access school. nevertheless, a participant reported how, in gondar, ‘most institutions have buildings constructed before the proclamation [requiring accessibility considerations] was adopted’, requiring collaboration among city administration to improve accessibility. the participant added: ‘we build ramps for some classrooms at those [school] support centers … even if some of the ramps have crumbled … we have also made modifications to special needs classrooms … we will make sure that new construction will include accessibility considerations from the very beginning.’ (p33-go, gondar) another participant from the regional education bureau discussed collaborating with schools and investing in ‘ramps for the newly established schools, making toilets accessible and comfortable to the physically disabled … students, and expanding these practices every year’ (p63-go, bahir dar). likewise, building community facilities such as roads and other transportation systems for students with disabilities to travel to and from school was also a priority among participants from gos. for instance, a participant in chilga highlighted the collaboration between the city administration and the municipality to ensure the accessibility of public spaces: ‘if the ditch is built and opened to the public without considering people with disabilities, an individual who walks with his legs and hands can’t cross the ditch. we facilitated the [accessible] crossing to be filed [with the government]. similarly, we initiated a walkway to be built so that students with visual impairments can walk over it using a cane.’ (p13-go, chilga) student enrolment and retention given low school enrolment, participants talked at length about multiple collaborative efforts to recruit children with disabilities to attend school, including community outreach programmes such as visiting, phoning or incentivising families of children with disabilities. for example, a participant from an ngo described attempts to ‘convince’ families through ‘community gatherings, festivals, and the like’ to send their children with disabilities to school (p06-cso, chilga). the participant also talked about improving awareness of ‘inclusive education … at school, home, mosques and churches using both traditional and modern associations’ (p06-cso, chilga). similarly, a civil servant in chilga shared: ‘we used influential religious fathers to speak about children with disabilities to their congregations … we encourage children to enroll in school through our qetena [the smallest administrative body in towns and cities] and village leadership …’ (p13-go, chilga) a civil servant in delgi concurred about the positive impact similar activities had on the school enrolment of children with disabilities as a result of community awareness efforts, ‘many parents started sending their children with disabilities to public places and schools.’ (p16-go, delgi). other participants shared stories of efforts to convince families to send their children to school targeted through phone calls. an educator in qola-diba, for instance, described a ‘plan to make a call campaign to [families] and to make [students with disabilities] register for school rather than hiding them’. the participant was among others who also emphasised building relationships with families by collaborating with community programmes such as: ‘[c]ommunity-based support and care coalition (the 3cs) or mechanisms intended to support orphans, the elderly, people with disabilities and human immunodeficiency virus (hiv) positive women [with special attention to children with disabilities and make sure their support are prioritized before others] in their neighbourhoods – to facilitate school enrolment.’ (p57-sch, qola-diba) on the other hand, participants described ‘identify[ing] households with children with disabilities’ (p19-cso, qola-diba) through ‘door-to-door mobilization’ (p02-cso, chilga). in particular, several participants, including a civil servant in chilga, described the importance of ‘using individuals who know the neighbourhoods well to explore the number of first-time children with disabilities enrolling in schools the following year’ and accordingly making adequate preparations to accommodate and support them (p13-go, chilga). likewise, an expert from an ngo operating in chilga indicated deploying: ‘[t]wo volunteers’ in collaboration with uog-cbr’s field workers to re-identify and register students with disabilities that the volunteers identified [following security-induced school closure] … we were able to recruit them from every kebele.’ (p07-cso, chilga). in the same vein, a civil servant in delgi described using official government channels and community social workers to gather information about children with disabilities and promote their school enrolment: ‘when we receive information that children are not willing to go to school or their parents refuse to let them go, we speak with their parents and school teachers and get the children to school.’ (p20-go, delgi) furthermore, several participants emphasised raising families’ expectations for children with disabilities to encourage school enrolment. for instance, a participant from an ngo engaged in door-to-door outreach programme described using: ‘[a] person with a disability, a uog graduate, as an advocacy officer … to serve as a role model for children with disabilities and … teach them about disability rights.’ (p07-cso, chilga) according to the participant: ‘we were able to register 170 students [for school] at first, but more children with disabilities signed up after a month or two by taking him as a role model. thus, [the school’s] number[s] reached [were] 340.’ (p07-cso, chilga) in addition, a civil servant in delgi noted: ‘we use every opportunity to tell them about people with disabilities who are now in top [government] positions because of their hard work in their studies. we tell them that they have bright minds.’ (p20-go, delgi) finally, several participants reported efforts to retain students with disabilities in schools once enrolled. for instance, a civil servant in delgi described efforts to address student attrition by: ‘asking teachers to tell us the students’ [with disabilities] reasons they drop out … if they [teachers] identify a problem for [students] dropping out of school, we go and consult with their families. we even collaborate with the uog-cbr program to go to their home and discuss ways to help them.’ (p20-go, delgi) further, a civil servant in chilga reported how they use ‘parent-teacher meetings’ to encourage families to keep their children in school: ‘when parents come to visit their children at school, there is a classroom for children with disabilities [an inclusive education resource centre] … parents see their children with disabilities playing with peers. this also helps the parents to believe that their children can fit into different situations.’ (p13-go, chilga) financial, material and medical support participants reported how organisations collaborated ‘to make sure that children with disabilities receive needed learning materials, medical treatment, and assistive devices …’ (p19-cso, qola-diba) to enhance inclusive education and ‘make sure that the students don’t drop out’ of school. (p03-cso, chilga) financial support participants described the importance of ‘pocket money’ (an informal phrase referred to as a monthly stipend the government provides for children with disabilities while in school) in encouraging school enrolment and retention among children with disabilities: ‘even if it may be a small amount, students come to school if they know only those who come to school regularly will get the money. and if they come to school regularly, they will keep on performing well.’ (p26-go, amh) according to an educator in delgi, the financial assistance, however, uses flat rates for disbursement by one’s disability type, thereby not meeting the dynamic needs of students with multiple disabilities who may need more support than others (e.g. students ‘who use wheelchairs and who cannot manage their saliva by themselves’ versus ‘those who have hearing impairments’) (p23-sch, delgi). in addition, students with disabilities receive governmental financial support only if they attend schools – they go without it if they drop out of school or during the 2-month school closure between academic years. this rule works against many students with an intellectual disability, as a civil servant in gondar noted: ‘the 2002 ec [ethiopian calendar] regional education bureau guidelines state that students with intellectual impairments should return to their families if they don’t improve within three years … but the thing is, change or improvement is measured in terms of academic achievement. however, there are many parameters for measuring change … [including] their social interactions, communication skills [and] physical well-being … however, the guidelines do not allow them to stay in school for more than three years unless they are academically fit.’ (p33-go, gondar) moreover, students’ monthly stipend and annual allowance do not adequately account for the high inflation and rising cost of living, leaving families with low incomes in dire conditions – especially for rural families who pay for transportation, rent and meals to send their children to accessible urban schools. as a result, many participants, including an ngo representative, reiterated that they ‘work[ed] in collaboration’ to ensure that students with disabilities ‘receive the [pocket] money on time … make sure that they are paid’ and advocate for ‘what could be done if a person stays away from school for some time’ (p07-cso, chilga). for instance, the ethiopian centre for disability and development, a local ngo, collaborated with government agencies to provide loans to families of children with disabilities to ‘generate income’ for their families. other participants proudly recounted positive outcomes of their advocacy, such as students enrolling in school and finding ways to more easily access pocket money by ‘open[ing] a saving account so that their payment can be credited to it’ and gaining assurances from the government that ‘the [monthly] payment shall not be terminated even if a student drops out of school’ (p03-cso, chilga). material support participants described collaborative efforts they used to assess the needs of students with disabilities and plan for materials provision. for example, educators and civil servants collected, organised and furnished ngos with relevant data on students and schools to facilitate support. for instance, a civil servant in chilga stated: ‘[ngos] don’t just come in and help. they want information. thus, we first collect the information in each zone. after that, we coordinate the kebeles and evaluate the information together. in addition, in my and the school principals’ presence, we talked about which student with disabilities has critical problems and need urgent support and which don’t.’ (p14-go, chilga) based on the identified needs, participants reported that educational stakeholders (e.g. missionaries of charity and organisation for social and health development) collaborated to provide students with disabilities with educational materials (e.g. books and pens, internet access, braille materials, uniforms, school bags, exercise books, canes, hearing aids and wheelchairs). civil society organisations also furnished special education ‘resource centres’ with ‘desktop computers with different types of software, like jaws’. for example, a civil servant in chilga indicated: ‘[in collaboration], we budget for yearly supplies based on the number of children we have in the year … in addition, when donors come … we connect them with concerned children through schools.’ (p13-go, chilga) other examples of collaborating and advocating for materials included ‘reach[ing] out to the woreda administration and asking them to be more inclusive and proactive’ and referring schools to ‘bodies that can cover their [inclusive] materials shortage’ (p19-cso, qola-diba). in chilga, a participant stated: ‘we go to offices such as the education office looking for exercise books and uniforms for the students [with disabilities]. they give us materials they obtained from other projects. when there is no uniform, we write a letter to schools so that students can attend their education without uniforms. still, we buy them uniforms when we get the money …’ (p02-cso, chilga) medical support some participants made efforts to provide medical care and materials for personal hygiene and sanitation (diapers, sanitary materials and soaps) to students with disabilities to encourage school participation and performance. for example, a participant discussed how ngos, uog and the cbr programme have collaborated to ‘facilitate children [with disabilities] to be able to get medical treatment’ at the uog referral or comprehensive hospitals, or ‘get children with disabilities [with advanced or unique health problems] referred to healthcare institutions in addis ababa for better treatment’ (p19-cso, qola-diba). likewise, a civil servant in delgi described how the women and social affairs office engaged with health centres and schools to identify students with disabilities requiring medical care and ‘find ways to provide treatment and medication’ (p20-go, delgi). teacher and student capacity-building participants, including a civil servant, described collaborative efforts to integrate inclusive, disability-related content into training programmes with curricula that otherwise ‘focus on the transfer of theoretical knowledge disregarding special needs education’ (p63-go, amhara). the participant elaborated on how education offices, educational institutions and csos collaborated in various woredas of the region to enhance teachers’ capabilities to: (1) assess and determine the level of students’ disabilities; (2) understand how to assist students using assistive technology or provide accommodations (e.g. ‘writing in bold or with a larger font size’, ‘tell them to take the front seats in classes’); and (3) engage in non-biased service delivery and student assessments (p63-go, amhara). several school staff trained in snie and civil servants described experience-sharing and knowledge-sharing among school teachers. for instance, one snie participant described a collaboration among the woreda education office, uog-cbr programme and schools to provide ‘sign language training for teachers … [about] how a teacher can treat a student with special needs [due to] a hearing impairment’ (p33-go, gondar). another snie expert insisted fellow teachers treat students with disabilities ‘equally with regular students in the teaching-learning process … in a fatherly and motherly manner’ (p05-sch, chilga). further, a school administrator described developing school-wide inclusive structures based on university and regional inclusive education training and integrating lessons learned from ‘visit[ing] exemplary schools like [the one in] hamusit [a town in south gondar]’ (p10-sch, chilga). similarly, a civil servant described training platforms and ‘experience-sharing’ activities to facilitate: ‘[p]eer discussions in schools … [to] connect children with disabilities with others … [and] eliminate the possibility of children with disabilities being ostracized by their schoolmates or in the community outside school.’ (p40-go, gondar) moreover, participants spoke about collaborations involving universities, ngos and the government to create inclusive education coursework for teachers’ training programmes. for example, an interviewee stated: ‘it was started at kotebe teachers college, addis ababa. then it was incorporated into the curriculum and implemented in addis ababa, dessie, and gondar teachers college … it now runs under the name of moral education, and many students are recruited to join this program … this course on special needs is offered as a common course in two colleges.’ (p03-cso, chilga) several participants also described collaborative efforts to build vocational and daily living skills among students with disabilities. for instance, a civil servant described how a go collaborated with schools to develop ‘life skills training provided for students with intellectual impairment so that they can take care of themselves and develop their communication and social interaction skills’ (p33-go, gondar). other examples of enhancing student vocational skills included training students in ‘handicraft work’ (p33-go, gondar) and ‘dyeing, weaving, painting, and sewing’ (p02-cso, chilga). another participant described efforts to support student entrepreneurship and employment: ‘after they [students with disabilities] are trained, they return to the woreda’s small business enterprise for a piece of land for work. the woreda’s administrator wrote a letter to them mentioning that each kebele should organize and give a house, land, and workplace for disabled individuals with training.’ (p07-cso, chilga) institutional accountability participants collaborated ‘to ensure the implementation of inclusive education programs … from the education office down to the school level’ (p40-go, gondar). for example, an opd chairperson underlined their ‘right’ and ‘responsibility to follow up all these [inclusive education] endeavors’ to ensure ‘the institutions have implemented what they have included in their [plans and] reports’ (p50-cso, qola-diba). other accountability measures included: (1) ‘check[ing] the number of students [with disabilities] enrolled in the schools [and] the extent to which they are benefiting’; (2) examining ‘the opportunities that the schools in the woreda created for the students to pursue their education’; (3) ‘evaluate[ing] the competence of the special needs education teachers and the materials needed for the learning of special needs students’, (p31-cso, gondar); and (4) monitoring ‘the provision of learning materials and proper use of the budget to implement inclusive education’ (p50-cso, qola-diba). the chairperson of an opd described holding ‘education offices and schools responsible when they fail to use the budget accordingly’ and that they ‘challenge them [education offices] when they don’t do what they are supposed to’ (p50-cso, qola-diba). an ngo participant also noted how they ‘pressured’ and ‘questioned’ the government ‘why they don’t implement [relevant regulations] and hire competent [special needs and inclusive education] teachers’ (p31-cso, gondar). nonetheless, the persistent and ongoing conflict and unrest in the amhara region affected all the study sites (but more gravely and frequently in chilga because of the added dimension of ethnicity-based disputes). participants indicated that violent and widespread conflicts resulted in frequent school closures and student dropouts: ‘conflicts often occur spontaneously … there were situations when students with disabilities, especially students with mobility problems … were forced to quit [school]. because of those conflicts, they have no guaranteed safety. when a conflict breaks out, one has to run for his or her life. a person with a problem with his [or] her legs would be afraid of such situations.’ (p14-go, chilga) another participant added: ‘there was no peace … this affected children with disabilities [more]. because their parents … do not access information about war or conflict. children with hearing impairments do not get current information about the war. children with visual impairments cannot return from school quickly when they receive information about impending conflict … so, [when schools reopen following conflict] children with disabilities may be absent from schools for a long time.’ (p13-go, chilga) the cycles of violence also led to reduced inclusive education accountability for promoting inclusive education and supporting students with disabilities. a cso participant, for instance, lamented how ‘people did not have time to meet and discuss the problems these children faced’ because of the frequent wars and conflicts (p06-cso, chilga). further, the conflict resulted in frequent ‘leadership’ changes, reducing educational collaborators’ expectations and accountability (p06-cso, chilga). because of the level of devastation caused by the conflict, the priority in chilga and its surroundings became reestablishing order and security and providing relief assistance for the needy whereby the administration started persuading all state and non-state actors to devote resources and efforts to these programmes, forcing ‘some ngos to end their terms and phased out their projects’ and creating a gap in the support students with disabilities used to receive (p06-cso, chilga). the participant continued: ‘the disabled were among those who suffered the most from internal conflict and instability … the government has allocated a financial budget for disabled students … nevertheless, since they are not going to school because of the lack of security and peace in the area, their pocket money becomes suspended. no one inquires where, why, and when they have gone.’ (p06-cso, chilga) given the needed shift in go and ngo efforts to community relief and security efforts, participants regretfully indicated that the conflict undermined the inclusive education achievements made over the years. discussion this study explored collaboration among educational stakeholders to make schools inclusive and accessible for students with disabilities in central gondar zone, ethiopia. it found significant and intersecting educational barriers that students with disabilities experience in ethiopia, corroborating reports in other studies (aldersey et al. 2020; geleta 2019; jones et al. 2021). for example, although institutions and individuals supported students with disabilities, there were notable gaps and irregularities in promoting inclusive education across study sites. consistent with existing research, barriers such as inadequate inclusive education resources, snie-trained teachers, funding and professional accountability continue to thwart inclusive education (alemu et al. 2022; beyene et al. 2020; tefera et al. 2015; tiruneh et al. 2019). participants’ experiences on multistakeholder collaboration also align with prevailing scholarly views on the indispensability of collaboration in removing barriers to inclusive education and supporting for students with disabilities in low-resourced countries such as ethiopia (hankebo 2018; negash & gasa 2022; temesgen 2018). for example, as reported in other studies (franck & joshi 2017; gedfie & negassa 2019; šiška et al. 2020), participants highlighted the potential of schools leveraging resource centres as focal institutions to promote inclusive education and support students with disabilities. for instance, resource centres could coordinate research-informed capacity-building programmes for teachers and students with disabilities, including creating a cadre of snie experts, experience-sharing and cascading snie training for all teachers. on the other hand, participants identified collaborative strategies gos, csos and schools used to increase school enrolment and retention among children with disabilities, including awareness campaigns, home-to-home visits, role modelling, self-advocacy, capacity-building and community campaigns. participants claimed significant outcomes as a result of these collaborative efforts, as also reported in other studies (brittanny & joshi 2017; hankebo 2018; tonegawa 2019). though studies reported the significance of the government’s financial support to students with disabilities when enrolled in school (e.g. admas 2009; franck & joshi 2017), this study identified instances whereby educational collaborators advocating for and extending the financial support into the off-school summer season to encourage school enrolment and retention. study findings also revealed efforts to support students who exit school through the development of vocational and life skills to reduce their dependence on families, communities or the government. finally, during this study, the amhara region, especially chilga, was deep into a multifaceted and protracted conflict. participants spoke of the rippling and deep impacts of persistent instability, which affected school activities as well as collaboration in support of inclusive education and students with disabilities in schools. during this time, conflict surges resulted in spontaneous school closures variable in duration and parents were often uninformed when schools reopened or were reluctant to send their children to school, causing a higher dropout rate among students with disabilities during the conflict period. furthermore, as ngos and gos focus on emergency and rehabilitation programmes, their usual support to schools or students with disabilities waned, dampening the already limited support for inclusive education. however, participants also recognised that government offices, with their significant limitations, continued to support schools in creating community awareness of disability, prompting parents to start sending their children to school after the conflict. study findings also provide an opportunity for a tentative systemic analysis of multistakeholder collaboration for inclusive education in improving accessibility, enrolment and retention, support, capacity-building and accountability. taking schools as systems, three discernible multistakeholder collaboration patterns emerge that initiate or promote inclusive education and services for children with disabilities: structured, semi-structured and unstructured collaboration. examining study findings in this way will help us understand the modal collaboration platforms that have been functional, or even effective, in promoting inclusive education in the study sites. structured collaboration involves sustained, well-organised and monitored alliances or engagements among stakeholders. an example of structured collaboration includes the world bank-sponsored ‘ethiopian general education quality improvement program for equity’ (e-geqip), channelling resources through the ethiopian government to support and strengthen general education. it uses a signed collaboration agreement with terms outlining party roles in the management, eligibility determination, provision of education support and services, school accessibility and supporting disadvantaged students. structured collaborations clearly outline eligibility requirements and enable students with disabilities to receive formal support via a system based on transparency, accountability and sustainability. moreover, such programmes significantly impact the status of inclusive education and the support children with disabilities receive. in other words, schools are more likely to make positive moves towards inclusion when they receive clear goals, structures, programmes, services, expectations, accountability and timelines from their significant environment and collaborators. semi-structured collaboration involves minimal management coordination among participants and minimal acknowledgement from a formal agency. this lack of formal oversight can undermine effectiveness, community ownership and sustainability. however, there is typically minimal negotiation or communication with schools to determine eligibility criteria. for instance, uog, through its cbr and faculty-initiated programmes, often uses a semi-structured format to support and train students with disabilities and to help schools and staff implement inclusive education. faculty-initiated programmes depend largely on university funding and seldom involve formal agreements with schools or beneficiaries, although there may be some consultation during the initial stages of project planning. in sum, semi-structured collaborations usually lack formalisation and clear expectations, roles and accountability, relying instead on providers’ willingness and resource availability. when visible support declines, these collaborations suffer, ultimately impacting inclusive education and children with disabilities. nevertheless, semi-structured collaborations are the primary means through which schools provide essential support and services for inclusive education and students with disabilities. the third type of collaboration, unstructured collaboration, involves organisations or individuals providing services and support to children with disabilities or schools through mechanisms that lack accountability, regularity, formality or sustainability. unstructured collaboration is often seen in rural schools and typically involves one-time material support without formal negotiations, shared management or ongoing administration (alemu et al. 2022). this type of collaboration does not fully fit the definition of collaboration, as the providers usually do not engage with schools, educational stakeholders or beneficiaries in planning or delivering these services and support. however, they mobilise resources or adjust their budget to provide assistive devices or educational materials from their sense of civic responsibility and appreciation of inclusive education. despite being irregular, informal and sporadic, these parties assist schools in filling essential gaps in inclusive education programmes. participant data indicate that structured (e.g. monthly stipend and annual allowance students with disabilities receive from the government under eligibility requirements) and semi-structured collaborations (e.g. collaborating on annual community campaigns to recruit students with disabilities to attend school) are the lynchpin of inclusive education and consistent support for children with disabilities in central gondar zone. this finding contrasts with other studies that claimed unstructured services and support are the foundation of inclusive education in ethiopia (hankebo 2018; mergia 2020; temesgen 2018). a key contributing factor to the relevance and effectiveness of structured or semi-structured collaborations is their verticality, involving parties with different resources or authority levels. vertical collaborations are usually government-led and integrated into official work and reporting structures, while horizontal collaborations are less common and more challenging to establish. horizontal collaborations involve parties with commensurate powers or roles in programming and delivery, requiring power negotiations and agenda formulations for fruitful and sustained engagement. we did not find many illustrative instances of such collaboration, indicating the enormity of work remaining to create a consensual and shared agenda among parties towards promoting inclusive education. limitations in this study, we conducted a qualitative-descriptive analysis of multistakeholder collaborations to support inclusive education in central gondar, ethiopia. our analysis and conclusions relied on data generated via interviews with key informants purposively selected from gos, csos and schools located in chilga, delgi, gondar and qola-diba towns. consequently, our findings and conclusions may not necessarily reflect other stakeholders’ views such as students with disabilities and their parents. although we also asked participants to provide retrospective and contextual data on inclusive education in their localities, our conclusions reflect the situation during the data collection period. we recommend future researchers explore multistakeholder collaboration through their various development phases of conception to maturity and track how they negotiate their interests, create shared agendas, assume complementary duties, among others, via longitudinal data using multiple research methods and tools to verify and triangulate findings and conclusions. conclusion in this study, we reported on the key sectors/areas and how educational stakeholders collaborate to promote inclusive education and support students with disabilities using qualitative data collected from key informants in purposively selected gos, ngos and schools in the central gondar zone of the amhara region, ethiopia. study results complement existing literature documenting patterns of inclusion and exclusion remain largely unchanged despite significant efforts in policy and programming (alemu et al. 2022; beyene et al. 2020; tefera et al. 2015; tiruneh et al. 2019). conversely, we found discernible factors in the central gondar zone that have not yet been extensively explored. for example, we found gos and ngos advocating for off-school season financial support for students with disabilities to motivate them and their families to enrol and maintain their children’s attendance. we also uncovered new contributions to the literature, including the negative impact of local instability and conflict on student attendance and inclusive education progression, multistakeholder collaboration, institutional accountability and inclusion support for students with disabilities. in addition, we found greater instances of meaningful multistakeholder structured and semi-structured than unstructured formats. from a systems perspective, schools are more likely to respond to structured or semi-structured support or feedback from their significant environment with formality in expectations, accountability, eligibility requirements and service provisions. finally, based on our findings and limitations, we recommend further studies on the significance and impact of off-season financial support to students with disabilities and conflict on multistakeholder collaboration, accountability and support for inclusive education. acknowledgements the authors would like to express their gratitude to the mastercard foundation scholars programme for providing funding for the research project. they would like to acknowledge the valuable contributions of xiaolin xu and andrew nguyen in organising online team meetings and work sessions, as well as facilitating in-person meetings for team members. the authors extend their sincere appreciation to haymanot ezezew, habib seid and abebaw for transcribing and translating the interview transcripts that they analysed for this article. competing interests the authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. authors’ contributions m.a. contributed to conceptualising, designing, planning, collecting, organising, analysing and interpreting data, drafting, reviewing, revising, finalising and submitting the article. g.l.f. and h.m.a. contributed to conceptualising, designing, planning, organising, analysing and interpreting data, drafting, reviewing, revising and finalising the article. a.n.a. contributed to planning, organising, analysing and interpreting data, drafting and reviewing the article. s.d. contributed to planning, collecting, organising and analysing data and reviewing the article. m.a. and g.s. contributed to designing, planning, collecting, organising, analysing and interpreting data, and reviewing the article. b.m.a. contributed to planning, collecting, organising, analysing and interpreting data, and reviewing the article. s.j.h. contributed to conceptualising, designing, planning, organising, analysing and interpreting data, and reviewing the article. funding information this research received funding from a not-for-profit organisation, mastercard foundation scholars programme. data availability the data that support the findings of this study are available on reasonable request from the corresponding author, m.a. disclaimer the views and opinions expressed in this article are those of the authors and are the product of professional research. it does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. the authors are responsible for this article’s results, findings and content. references admas, f., 2009, ‘intervention practices in kokebe-tsibah special unit for children with intellectual disabilities: an 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